tag:blogger.com,1999:blog-54419897129185791332024-03-13T10:48:22.572-04:00Rarer in Girls...My Daughter with AutismRarer in Girls...Life with my daughter Janey, who is nineteen and severely autisticSuzannehttp://www.blogger.com/profile/08240262747073351481noreply@blogger.comBlogger1012125tag:blogger.com,1999:blog-5441989712918579133.post-35253359443133241692023-12-13T22:39:00.001-05:002023-12-13T22:48:19.152-05:00Catching Up<p> So often, I think about writing a blog entry here, and get overwhelmed by all I want to catch people up on. I didn't used to be that way---I'd write multiple entries a week, sometimes. Either I'm getting older, which of course I am, or as Janey gets older, the issues I have to write about are different. Day to day life isn't as challenging as it was at times, but week to week, month to month, year to year life feels more complex, less easy to sum up.</p><p>One big happening is that Tony got guardianship of Janey, officially. I wrote about the endless seeming process we had go to through for this. He finally had the day in court, and after hours waiting in the courtroom to be called (luckily we decided against bringing Janey to court with him, which wasn't required), the judge approved the guardianship without any real problem. It does have to be renewed every year, because of the medication she takes, but she is assigned an attorney for this, and it shouldn't be as tough a process. We were adviced just one parent should be the guardian, in most cases, so we picked Tony. It doesn't make a big difference day to day, as Janey wasn't really apt to make a lot of decisions on her own, but for things like financial issues or health care issues, it just makes things more straightforward.</p><p>Another happening---Janey finally started getting social security. It took over a year for her application to be processed, but she was approved, and gets a monthly payment now---not enough to live on, certainly, but it helps a lot. We are getting retroactive payments back to her 18th birthday, too, in several installments. We are using her money for the special food she asks for, and for clothes and pull-ups and so on. This is the kind of social security for people who will not ever be able to work, and I'm very glad it exists, but if she didn't have a place to live and a family to care for her, it wouldn't go far at all. But in our situation, it is helping quite a bit---the years since Tony retired have been tight ones financially to be sure.</p><p>We are currently in the middle of yet another endless process---what is called the 688 application. It's the process for getting Janey services when she turns 22, in less than 3 years now. It involves a referrel from the school, us sending in huge amounts of documents, then in this case, us getting back requests for even more documents, mostly it seems evaluations from all different phases of her childhood. It's not enough to show she has severe autism---I guess we have to show she's had it all along, or that we didn't just somehow try to game the system by getting one diagnosis along the way and then just coasting along on that, reaping in all the exciting benefits it gave us.... I simply can't understand it can't be an easier handoff from school to adult services. And from what I hear from other parents in Massachusetts, the services actually available once Janey turns 22 are very limited, even for those with severe needs.</p><p>This ties in a bit to one good development. Janey has started an after school program. She hasn't been in one for many years, since she was about 8. This one is especially for people in what's called the transition program, the life skills program in the public schools for people 18-22. It's 4 days a week, and there is transportation home (without that, we wouldn't have been able to do it, as in the evenings a drive to her school could take up to 2 hours in Boston traffic each way) On the days Janey goes to after school, she gets home as late as 7pm---that is after leaving the house at 6am! It took us a bit to decide whether or not we wanted to send her, but what it really came down to was that there just aren't many opportunities out there like this one for people like Janey---a chance to socialize with her peers, to have music and dance lessons, to live more of her life not just being home with us. From what I hear about what's out there for those like Janey once they are 22, she might have many years of being home with only perhaps a day or two of a program a week, so we want to give her what we can for recreation and time away from her dull parents while she's still under 22. We hope she's getting adjusted to it---there were some reports of tough days at first, with some crying, but we are continuing to be so impressed with her school and how much they care for Janey, and work hard to make her happy and keep her engaged. We talked to the after school director the other day, and she was making fried rice with Janey---having realized the key to Janey is plenty of food that's been freshly prepared!</p><p>We are very happy with Janey's new teacher for the regular school day, too. Janey still gets to see her beloved Jamie a lot, her high school teacher, but her new teacher, like Jamie, is so caring and enthusiastic and just seems to get Janey---it's hard to believe she's had as wonderful teachers as she's had year after year after year. </p><p>Over Thanksgiving weekend, Janey has a tough time. We aren't sure what was up---if she didn't feel well, if she was confused by the afterschool starting, and then it being a half day before Thanksgiving, then a 4 day weekend---Janey isn't a huge fan of routine changes like that. Whatever it was, she cried and screamed and was unhappy all day long for four days or so. It was a horrible flashback to the past, when that kind of time happened so much more. But it was also a good reminder of how far we have come, that we rarely have that kind of time any more. Most of the time, Janey is pretty content. She likes what she's liked for years---car rides, watching Tony prepare food and then eating the food, taking way too many showers, and watching certain episodes of certain TV shows or selected scenes of certain movies over and over and over. Right now, it's mostly Vampirina, Fancy Nancy, Little Einsteins, Encanto and Toy Story 4. We are never quite sure why she gets into the shows she gets into, but boy, does she love them once she does.</p><p>With Christmas around the corner, I have the bittersweet feeling I often get, but less than I used to. Janey isn't into Christmas. She likes the music, but otherwise, she doesn't care---she barely notices the tree, she doesn't generally like presents, she isn't happy with routine changes it brings. I think I've accepted this, and allowed myself to focus more on the boys for Christmas, even now that they are getting into their later 20s. It's a little bit of a regret of mine, that it took me this long to really accept that what she wants for Christmas is a day like other days, and we can give her that as much as we can while still making the day special for the rest of us. I hope that all of you enjoy the holiday season in a way that works for your family. I hope 2024 is a good year for all of us. Janey will be turning 20, and I hope to keep writing about our journey with her through her 20s and beyond. Happy Holidays! Merry Christmas! Happy New Year!</p><p><br /></p><p><br /></p><p><br /></p>Suzannehttp://www.blogger.com/profile/08240262747073351481noreply@blogger.com0tag:blogger.com,1999:blog-5441989712918579133.post-56736343451132177642023-08-14T20:49:00.002-04:002023-08-15T09:17:14.371-04:00Summer updateIn no particular order, some updates from our summer so far!<div><br /></div><div>The initial genetic testing came back. It was the kind of testing that looked for single letter changes in genes, not for larger deleted or duplicated portions of genes. It showed that Janey didn't have Rett Syndrome, as the geneticists thought she might. What did come up is a disorder that is hard to figure out the significance of, and which might or might not have anything to do with her autism. It's a dominant genetic disorder that can cause seizures during sleep of the frontal lobe. It has once in a while been associated with intellectual disabilities, but not usually to the extent that Janey has. It can cause other sleep disorders, and she certainly does have very unusual sleep issues, but not perhaps the ones this causes. The interesting thing is that the testing shows she inherited it from Tony. Neither of them seem to have ever had seizures, during sleep or otherwise. I was a bit overwhelmed at the time the report came in and I haven't researched this as much as I eventually will. It's a very rare disorder---only about 100 families in the world, and we do plan to join a study about it. But for now, it raises a lot more questions than it answers.</div><div><br /></div><div>Summer school was...mixed. The first 3 weeks were great. Janey was in a sleepy mode, and therefore was more than well rested for school, and seemed to thrive. But starting with week 4, she went into no sleep mode, sleeping very little each night if at all, and when she was awake, she wasn't in a good mood. We started getting calls from school every day. If you've ever been in that place, you know it's very tough waiting for that call, and hearing the latest about what has gone wrong. I fell into a very low mood for a few days there, remembering all the toughest times. Summer isn't my favorite time of year ever, and with Janey screaming and crying all day, then heading to school to scream and cry more so we got calls to go get her....it wasn't a good couple of weeks. She was also acting up on the bus to a big extent, and we got to hear about that every day as she got off the bus. But by the last days of summer school, she had cheered up a bit and the very last day, I guess she was even good on the bus. </div><div><br /></div><div>At home, Janey loves to do three things most. She likes car rides, showers and eating. We do all we can to give her as much of those three things as we can, but there comes a time around 8 each night when she's had multiple car rides, multiple showers, and she's eaten as much as any person on earth needs to eat in a day (usually very healthy food, but even that has a limit). When we tell her no more car rides, when we report that the shower is closed, when there is no more food being offered---well, you can guess it's not a happy time. It can feel very frustrating to try so hard all day long to keep her happy, and then to have her get so angry when we finally just can't offer any more. I know she isn't really intellectually capable of understanding why we are bothered by that, or that she isn't really being fair, but we are human beings with feelings too, and we can get worn down by her fury.</div><div><br /></div><div>More and more, we realize Janey really craves, in addition to the three things mentioned above, time to herself, time alone. And that is one thing we can't really give her, not fully. When she gets home from a car ride, she likes to play in our long driveway. And that's fine---as long as we are watching her. We live on a busy street in the city. She isn't an eloper, and she has never gone into the street, but strangers pass by all day, and it just isn't safe for her to be alone out there. But she tries. She attempts to push us inside the house. She says "You want to take a shower?", hoping to tempt us inside with what she herself would love. She sometimes is even more direct, saying "Want to GO AWAY???" It makes me so sad that she can't have that little thing she wants, to just be alone and play. We tell her we are just going to be sitting there---we won't cramp her style, but of course that doesn't matter. When she's in the house, she likes it best if she can be alone in the living room, and we do try to make that happen, but our apartment isn't huge and we do even inside have to keep a backward eye on her. I wish she was able to have the freedom she clearly wants. But I don't see a solution here.</div><div><br /></div><div>Janey will be 19 in a few days. It's hard to believe. In so many ways, she's a delight to us. Even with my griping here, almost every day brings another great time with her, another funny moment or surprise joy. Today, Tony took her for Chinese takeout, and they waited in the restaurant for her food. When someone else's order was called, Janey eagerly jumped up to grab the bag, and Tony had to stop her from walking off with it. Then she saw someone at a big table that looked like it had lots of room, and she went over to try to sit there. Both these things were done with her infectious smile and joy in life, and people responded to that, by smiling and laughing and being kind. There is something about Janey that brings that out, in so many people in so many ways. It's what gets us through it all. It's what gives us hope on tough days. It's been a long, strange 19 years, but boy, does she keep life interesting.<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_GSJBYSTy7weOJKJSjw-CeLuH60Wjqt0D_GuitFKWSlHbBkzDVb9gwhHeFsVjIJJOY7XrbYUhx89Dw9dndC6tOT56tQZfDXbonSlHc5Pez7CDmJbwx0RmhioqXKCyxnrta44w_y6LoaaCRVXVypUizYt4py_bFLGD8-8vZFNjx3MlqTVS81-KXghMO6rX/s1191/P1010998-EDIT.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="894" data-original-width="1191" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_GSJBYSTy7weOJKJSjw-CeLuH60Wjqt0D_GuitFKWSlHbBkzDVb9gwhHeFsVjIJJOY7XrbYUhx89Dw9dndC6tOT56tQZfDXbonSlHc5Pez7CDmJbwx0RmhioqXKCyxnrta44w_y6LoaaCRVXVypUizYt4py_bFLGD8-8vZFNjx3MlqTVS81-KXghMO6rX/s320/P1010998-EDIT.jpg" width="320" /></a></div><br /></div><div><br /></div><div><br /></div>Suzannehttp://www.blogger.com/profile/08240262747073351481noreply@blogger.com0tag:blogger.com,1999:blog-5441989712918579133.post-45211992173646521662023-07-03T15:22:00.002-04:002023-07-03T15:41:42.764-04:00Oxygen masks are hard to put on<p> We've all probably been reminded of airplane rules, how they tell adults to put on their own oxygen mask before their child's one. It's part of a series we get told as autism parents, and I don't think I'm the only one that can get annoyed by them. The reminders feel like they are saying "You are responsible for your own burnout, your own tiredness. You need to take time to put yourself first. That's on you" And I don't even need to explain to those of you who are living this life the flaw there---how impossible it can be to get even a minute to take care of yourself, how none of us can just say "Okay, today is for ME! I'll call the handy available affordable babysitter, who will be right over, and I'll go out to the spa and to lunch and to the museum and a hotel overnight and then I'll come home and be a better autism parent, because I did the right thing and took care of myself!" Ha. HaHaHa.</p><p>I say this because I think you'll all get why over the past 9 or 10 years, I ignored a lot of signs my health was worsening. I had a few diagnoses already---NASH liver (non-alcoholic liver disease), Sjogren's syndrome (an autoimmune disease that causes dry eyes and mouth and extreme tiredness) and hypothyroidism, along with smoldering diverticulitis. I figured all of those were more than enough to explain why I was so extremely tired all the time. I assumed they were also why it was becoming increasingly hard to concentrate or multi-task, and even why I had pain in my muscles and in my bones al the time, every minute, always. When a year or so ago my vitamin D was extremely low, low enough that several doctors said they'd never seen a lower read, I just took more D. When, over the course of the past 9 years, I had blood test after blood test that showed I had high calcium levels, I didn't investigate and neither did any doctor. Those tests were never the focus of my blood tests. Instead, my primary care doctor constantly tried to get me to take cholesterol drugs, which I weren't convinced were safe for my liver. Finally, I decided to switch doctors. I was feeling increasingly unheard.</p><p>I saw my new doctor, he ordered blood tests, he saw my calcium was once again high, and miracle of miracles---he ordered one more test, a test of what is called Parathyroid Hormone. My PTH level was sky high. That was all it took. He diagnosed me with Primary Hyperparathyroidism. </p><p>For those of you who don't know what that is---in a nutshell, it's when a parathyroid gland (or two or three or four---you have four, located on the back of your thyroid) goes haywire. It tells your body you don't have enough calcium, when in reality, you have too much calcium. Your body goes crazy trying to get more calcium, and takes it out of your bones. The result is the symptoms I'd been having, and more---extreme tiredness, muscle and bone pain, low Vitamin D, confusion---and there are many more. Do a quick Wikipedia search about it and you'll learn a lot. And PLEASE---the next time you have blood tests, check if your calcium is high, even a little high. If it is, ask for a PTH test. Right away.</p><p>There is only one cure for hyperparathyroidism---surgery to remove the haywire gland. I had all kinds of imaging tests to try to locate exactly which gland had gone bad. They weren't definitive, so I went in for exploratory surgery. Luckily, the gland was found quickly. The surgery took about 4 hours, took out the bad gland, I was in the hospital only one night, the main pain afterward was just from having had a breathing tube, and as parathyroid hormone has a half life of only about 4 minutes, by the time I came out of anesthesia, I was cured.</p><p>And, incredibly, within days, the pain I had felt non-stop for years and years and years was GONE. Not just better, but gone. My confusion was greatly improved. I felt just...better. Better like I had thought was no longer something I could feel.</p><p>My point here? Well, it's partly just to educate people about hyperparathyroidism, which is sadly underdiagnosed. But it's more to say---we as autism parents, sick or not, undiagnosed with some surprise disorder or not, just can't put on the oxygen mask easily. We are used to being tired. We put our kids first, not because we are saintly self-sacrificing parents, but because we don't have a choice. Our kids need us. They need us 24 hours a day, 7 days a week, 365 days a year. And if our kids have severe autism, by any name you choose to call it, as Janey does, this will not change, not for our whole lives. I could have easily gone the rest of my life without the surgery, without the diagnosis, because my life simply didn't leave me the energy, the time or the help we needed to get the diagnosis.</p><p>Even to have the surgery, Tony and I had to ask our sons to take time off of work. They did, willingly, and they took excellent care of Janey. But that is not something we can do except in emergencies. If they had not been able to do that, or if I had been a single parent---I don't even know how I could have had the surgery. </p><p>We need a structure in this country to provide REAL help for people caring for those with severe autism. We need it NOW. It exists in most countries. I know that from my hobby of exchanging postcards with those around the world, and from hearing from other parents through this blog. We need it not just so we parents can get a break, but so we can live. Literally, live.</p><p>Janey did not do very well with my surgery. The day before the surgery was her last day of school. Usually, we would have talked to her a lot about this, and had a busy day set up to make up for the lack of school the next day. But we were pretty distracted. So, the day of my surgery, she had no school, and Tony and I both were gone from the house---something she is supremely unused to. She had fun with her brothers, but then the next day, again, Tony was gone getting me home. When I got home, I had to stay away from her for a few days. She likes to jump on me with enthusiasm, and my incision made that unsafe. The incision was also big and scary looking, like someone had tried to cut my throat (it's already a lot better looking now) The surgery was on a Thursday. By Sunday, Janey was in the worst shape mentally we'd seen in years. She was screaming non-stop, all day. She frantically took shower after shower, asked for ride after ride, bit her arm and wailed and was so unhappy we worried she'd broken a tooth or something. It took me getting up the strength to go for a ride with Tony and her and me finally doing what I should have done from the start---explaining over and over what had happened, telling her my hurty place would get better soon, giving her treats and spending calm time with her--to get her calmed down. She still is avoiding me when she can, quite bothered by the scar, but much better than that awful Sunday. We were given a vivid reminder we can't ever take the years of vastly improved behavior and happiness she has for granted. We were also given a vivid reminder of the challenges of self-care. Caring for ourselves as parents isn't a zero sum game. Caring for ourselves often results in less time to care as well for Janey as she needs.</p><p>And so---we are into another summer. I hope it's starting out well for all of you. Good health to you all, and check your calcium!</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEhXpc0dDJob2hrj4fYorPyip_aWzWo3yrWriYMPVI3iyS3jYa4SGAAhrRmAV8JTX-GRqtf37ETK8qYVKoxZmQlcgcYg2pToBOmA_fNRH8e7iBb-n_yZRl83KeFhCjuaEGaesW82P-q-6RH5QRXxrE0soEi1jevk52D_7GmLIM3LAPSTirOHhTHVMAiQn2cS" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="225" data-original-width="225" height="240" src="https://blogger.googleusercontent.com/img/a/AVvXsEhXpc0dDJob2hrj4fYorPyip_aWzWo3yrWriYMPVI3iyS3jYa4SGAAhrRmAV8JTX-GRqtf37ETK8qYVKoxZmQlcgcYg2pToBOmA_fNRH8e7iBb-n_yZRl83KeFhCjuaEGaesW82P-q-6RH5QRXxrE0soEi1jevk52D_7GmLIM3LAPSTirOHhTHVMAiQn2cS" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEigBjKZMGpF73KeHURK8Fqx2mYKBDPU08HLd2s7r6XUyHCxzN2SXtve6BDK6_Ar97_tpl2yYyJoYU7JgOc0HWQoZKRYFAoAYBtSOrlXBpXfM-iHOa5sQHWvMp-X7UT6Gl9QYa6UCdhlViB--9o0jOqM4cBY50QfOPowTUSETRc15gSGYIkr50Tn4M-JWgpc" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="549" data-original-width="549" height="240" src="https://blogger.googleusercontent.com/img/a/AVvXsEigBjKZMGpF73KeHURK8Fqx2mYKBDPU08HLd2s7r6XUyHCxzN2SXtve6BDK6_Ar97_tpl2yYyJoYU7JgOc0HWQoZKRYFAoAYBtSOrlXBpXfM-iHOa5sQHWvMp-X7UT6Gl9QYa6UCdhlViB--9o0jOqM4cBY50QfOPowTUSETRc15gSGYIkr50Tn4M-JWgpc" width="240" /></a></div><br /><p></p><p><br /></p><p><br /></p><p><br /></p>Suzannehttp://www.blogger.com/profile/08240262747073351481noreply@blogger.com1tag:blogger.com,1999:blog-5441989712918579133.post-16583908470237758492023-04-23T11:27:00.007-04:002023-04-23T11:56:52.523-04:00The tasks of adulthood and a big surprise possibility The last few months have felt both uneventful and hectic. The uneventful part is good. Janey has had a very good stretch of happy and easy behavior. She's loving school, enjoying home for the most part and generally being quite a delight. The hectic part---us trying to do what needs to be done for an adult with severe disabilities. We are working on getting legal guardianship for Janey and getting her Social Security income---both things that need to be done when or soon after an adult like Janey in the US turns 18.<p>
Applying for Social Security was surprisingly easy, but that's all that's happened so far---applying. We applied I think last November, and haven't heard a single word since then. We were told it could take until May or so to hear, so we are waiting until then to inquire further, but I certainly hope eventually she is approved. She seems like a pretty straightforward case, but you just never know. We did an application mostly by phone, and did a long questionnaire about her abilities, and she has no income or savings, so we hope we did everything we needed to do and it's just a matter of time.</p><p>
Guardianship---that's another kettle of fish, to be sure. What an incredibly long and hassle-filled process, which isn't over yet. In Massachusetts, getting guardianship involves getting statements from 3 different professionals---a doctor, a social worker and a psychiatrist. Supposedly the second two get done by the schools, and the first through our health plan. We started with the doctor, in November, and got the paperwork for the schools to do. We had thought there had already been a psych eval. done at the schools, as we were told there would be, but somehow it got lost in the shuffle due to a maternity leave. We eventually got it done, and got the social worker's report, but then realized a couple crucial things were missing. Because Janey takes a psychiatric medication, we needed to have her prescribing psychiatrist sign a form about that, and then there was a question involving whether she was capable of understanding the medication and its potential side effects. That was marked yes, which is certainly not the case.</p><p>
So, with the pressure of time, as the guardianship papers need to be turned into the court within 6 months of the first signature, we had to get the form done and the question corrected. That involved lots of unanswered calls and waits. We had by that point gotten the help of a free legal service for low income people, but with all the delays, they closed our case. Once we finally got the information we needed, we did get them to reopen it and help us complete the endless forms, and we finally turned in the paper, just in time.</p><p>
The next step was serving Janey with papers stating we were requesting guardianship of her. This seemed a bit useless to us. Janey doesn't understand anything about the process, and it seemed like someone spending two minutes with her could have told them anything they needed to know. However, we certainly do understand that in getting guardianship of a person, the person is giving up a lot of rights, and the process needs to be complete and thorough. So---we took the papers to serve to the house of my dear friend Maryellen, who has known Janey since birth (she was there when Janey was born!), we did our best to explain things to Janey (we basically told her that we were going to make sure we could always take care of her) and Maryellen handed the papers to Janey, officially serving her (it had to be a non-relative doing this) We videoed the big moment. </p><p>
Now that the papers have been returned, we actually have a court date, next month. I am crossing my fingers that all goes smoothly and we get guardianship (or actually, Tony gets guardianship---it's recommended that just one parent becomes the guardian) Then there are just reports to be filed at regular intervals after that, etc... It's quite a complex deal.</p><p>
During the very first phase of all this, when we talked to the developmental pediatrician who did the first form, she suggested we might want to take Janey to a geneticist, since there have been so many advances in genetic testing lately. That sounded like a good idea to us, and I set up the appointment, for which there was quite a wait. </p><p>
We saw the genetic counselor and the geneticist on Friday. I was not expecting too much information from this visit. I figured by this point, we had covered most bases with Janey, and I had pretty much resigned myself to never getting much in terms of the "whys"---why did Janey regress so suddenly and badly? Why did she have such slow physical development early in life, which isn't usually an autism thing? Why does she have the few other odd things---the lack of periods, the mild scoliosis, the strange eyes rolled up high at times, the occasional severe hand wringing? </p><p>
To my vast surprise, after a very thorough and well conducted history and physical exam, the two person medical team said they had a strong suspicion that Janey might actually have a genetic disorder---Rett Syndrome. </p><p>
I had heard of Rett Syndrome. It's always listed as a variant of autism, one that only girls get. But all my reading about it made it sound far more severe than what Janey has. My understanding was that girls with Retts didn't ever walk or talk at all after they regressed, that they had no useful hand function due to hand wringing or other hand movements that never stopped. But the genetic counsellor told me that with the increased availability of genetic testing, it's been realized that there are many forms of Retts, including ones that sound a very lot like Janey. One of those is called the Zappella variant, or the Preserved Speech variant, and girls with that retain some speech and have much more use of their hands.</p><p>
We agreed to have Janey tested---in fact, to try to get our health plans to cover testing of almost all genes that have been mapped, but that failing, to start with the Retts gene. It will take months to get the results (we haven't even yet gotten the testing kits that come in the mail) </p><p>
I admit this all has flustered me a good bit. I am not sure why. It wouldn't change anything about Janey. It would perhaps relieve some of the guilt that I imagine you other mothers are familiar with, the feeling that I did something somehow to cause Janey's issues. Rett Syndrome is something that happens at conception. It isn't even passed down by parents. If she has it, her fate, her regression, so much of what she is, was determined the moment she was conceived. I am working, as several friends have advised me, on not trying to analyze why this is feeling like such a shock, a somewhat unwanted shock. But it is.</p><p>
Of course, we don't know for sure Janey does have Rett Syndrome. If she does, I will go into full research mode, and I will share what I learn with all of you. It sounds like, with the recently discovered variants, that others reading this might also have a girl with Rett Syndrome, without knowing it. And I know I might be getting the facts or terms about it wrong---please forgive me if I am. This is extremely new to me.</p><p>
The other hugely bizarre thing is that literally DAYS before we learned about the Rett Syndrome possibility, the first ever drug for the syndrome was approved. It's called Daybue. I have no idea if Janey would be a candidate for taking it with a variant, and I've avoided reading too much about it. It would be almost too much to believe that there could be an oral medication that would help Janey's functioning. I can't start thinking about that right now, but as I have so very many times over the years, I wanted to share this journey with all of you---partly, as always, for myself---because it helps to not take these journeys alone.</p><p>
So---adulthood. Wow. It's been something so far. But at the core of it all is our Janey. She seems to be enjoying life. This past week was vacation week, and several times she brought us her backpack and said "Go on the school bus?" We love her love of school. She has fun with most of the same things she's had fun with for a while---car rides, eating everything and anything Daddy makes, watching Vampirina and Little Einsteins and Fancy Nancy and all the Toy Stories, listening to music, jumping and dancing---just being our (most of the time) joy. Janey, you are turning out to be one fine adult!</p><p></p><p></p><p></p><p></p><p></p><p></p><p></p><p></p><p></p><p></p><p></p><p></p><p></p>Suzannehttp://www.blogger.com/profile/08240262747073351481noreply@blogger.com1tag:blogger.com,1999:blog-5441989712918579133.post-75774036315724013922023-01-31T09:45:00.000-05:002023-01-31T09:45:36.859-05:00Independence when possibleIf Janey were able to tell me what she most wants in life, my guess would be it would be increased independence, and that can be heartbreaking to me. With her intellectual disabilities and severe autism, she will never live independently, she will never be able to leave the house on her own, she will never indeed even be able to be at home alone for even a minute. The few times she's been able to express thoughts in this area, she has asked me to go inside while she plays outside. Even that isn't really possible---we live in a busy street in the city. We sometimes stand just inside the door, to give her a little feeling on being on her own, but that's the most we can do.<div><br /></div><div>So lately, we've been working on ways Janey can be independent in the areas where it IS possible. We've found a bonus in this---it makes life a lot easier for Tony and me, and gives us a bit more time to ourselves. It's a true win-win.</div><div><br /></div><div>We had a breakthrough a few months ago with the shower. As you might recall, Janey adores showers. She will happily take four or five a day. Once she hopefully starts getting social security, I think most of the money will go to our water bill! But we have gotten weary of the shower routine, which we somehow assumed we always had to do most of the work for. Then she surprised us. One of the those nights when we simply couldn't keep our eyes open any longer, after she had been awake night after night, she got tired of waiting for us. We awoke to find her soaking wet, having given herself a shower. We rushed back to turn off the water, but otherwise, all was mostly fine. </div><div><br /></div><div>We had no idea Janey knew how to turn on the shower. It's a little complicated, like everything else in our old house. And the next day, when she asked for a shower, we told her to start one herself, to try to see how she did it. Well, she just stood there. We decided to wait it out, and finally, after 38 minutes (we kept track), she got into the shower and reached up and turned on the water.</div><div><br /></div><div>So---the jig was up. Now, when she asks for a shower, we tell her "Go ahead! Take a shower!" And she does. It sometimes takes a very long time for her to do all the steps, but she's happy, going at her own pace and working toward what she wants. I still wash her hair when it needs washing (maybe someday we can figure that one out, but not yet!) and we block access to the shower now at night, to avoid water being left on for hours and overflowing (turning OFF the shower isn't in her toolkit yet), but during the day, if she wants five showers, she gets them, and we get a little break. We check on her a lot, we make sure all is well, but mostly, she does it on her own.<br /></div><div><br /></div><div>Another breakthrough, one that took Tony and me stupidly long to figure out, was TV access. We have an Amazon Fire system to access the streaming services we have, and even for us, it's not the easiest thing to figure out. For Janey, despite us trying very hard for years to teach her, it seemed impossible for her to learn. So when she wanted to watch a show, she'd come to us with the remote and say "I need help!" Which we were happy to do---for the first 5 or 10 times an hour. The problem is that she doesn't generally just watch a show or movie all the way through. She like the intros or certain scenes, something she can do easily on her phone and tablet, but something beyond her on the "big TV" using the remote. </div><div><br /></div><div>Finally, we realized that all the streaming services can be accessed by computer. Janey uses a mouse with ease. I'm not sure why she can use a mouse but not a remote, but I think it has to do with the visual cue of the caret on the screen. Our TV is set up so it can also be a computer monitor, with the push of a button. So---we "lost" the Fire remote. It stays lost at any time Janey is home. If she wants a show, we tell her "You know how to do it!" and she does. She switches easily between services and YouTube and rewinds and repeats to her heart's content. It was a rough few days at first, with many hours of "I need help!", but when she realized the remote was "lost" for good, she adjusted.</div><div><br /></div><div>This is an example of something that we should have figured out years ago, and you might wonder why we didn't. I think part of it is we just get tired. It can feel easier in the moment to once again put on a show for her, to say "Okay, one last time!" when we know it's not one last time, than to take the time to figure out how to change things up. I have a feeling most of you caring for someone like Janey get that. Constant tiredness, constant vigilance---those are not friends of innovation.</div><div><br /></div><div>The third area we've made some progress with is Janey being awake at night. No progress in keeping her from BEING awake at night---we've realized that's probably not going to happen. Janey goes in cycles. For a few weeks, she sleeps more than most people---sometimes going to sleep soon after coming home from school and sleeping all night. Then there might be a few days of near typical sleep. Then....the few weeks of very, very little sleep, where she can be up nights in a row with NO sleep, or sleep only a few hours a night. </div><div><br /></div><div>These times are currently the hardest part of being Janey's parents. It's no coincidence that being prevented from sleeping, being woken all night, is sometimes used for torture. When we are up all night with Janey, we simply don't function at all close to normally during the day. We are in a constant haze. So, figuring out the nights is a priority.</div><div><br /></div><div>We are lucky in a few things. Janey is not an eloper. She doesn't try to leave the house. Over the years, we've childproofed, or Janey-proofed, so that she can't get at things that aren't safe for her. But still, when she didn't sleep, we didn't sleep. Part of that was just habit---even though she now was pretty safe at night awake on her own, we couldn't relax. And partly, it was because if she ran into something she wanted we couldn't help with, she'd wake us up.</div><div><br /></div><div>This problem isn't solved, but it's better. We have started setting things up for Janey to access in the night. Her phones and tablets are always accessible and charged, and we finally figured out (thanks to Freddy, our in house IT guy) how to take the passwords off them safely, so she doesn't need to wake up to constantly reinput the passwords. We started leaving food Janey likes front and center in the fridge, leftovers for her to find. She can get herself a midnight snack if she wants. And now, we can better doze as she's awake. Not totally---she can be loud, and she still wakes us fairly regularly, but our sleep (and by our sleep I'm doing a disserve not to say Tony's sleep, as he has always done the lion's share of the night shift) is more than it used to be.</div><div><br /></div><div>It's striking me that it's fairly little things like this that make life easier---finding small ways to let Janey be the adult she is, and let us be the tired late middle aged people we are, letting us co-exist in a way that works a bit better for all of us. There's areas that can't be changed---Janey is not going to learn how to drive so she can take herself for the car rides she so craves---but at times, it feels like we are making progress in figuring out, after 18 years, this unique lifestyle.</div>Suzannehttp://www.blogger.com/profile/08240262747073351481noreply@blogger.com0tag:blogger.com,1999:blog-5441989712918579133.post-32726837186054462622022-12-03T21:58:00.000-05:002022-12-03T21:58:53.677-05:00The Scariest Hour<p> Well, once again, it's been a while! I think often about writing a post here, but it seems often thinking is as far as it gets. But an experience a few months ago has been on my mind constantly, and I guess I'm ready to write about it.</p><p>In early October, COVID finally hit our family. I was starting to wonder if we were one of the rare families with some kind of immunity, as Janey had been going to school unmasked and Freddy to work unmasked for a long time at that point, and both of them had been exposed without getting it several times. But, it turns out, we aren't immune! I'll say in advance we were lucky---aside from what I'm going to write about, we got off a lot easier than a lot of people, and we know how fortunate that is. </p><p>Freddy, the younger of Janey's two older brothers, came home from work on a Friday very sick and finally we saw the two lines of a positive test. Tony felt sick on Sunday, and again, two lines. I woke up Monday morning with quite a sore throat and got my own positive result.</p><p>As Monday wore on (Columbus Day Monday, so Janey was home), I felt sicker and sicker and sicker. My fever went up to over 103 and wouldn't come down, and I was shaking. My oxygen started dipping. I have several fairly serious pre-existing conditions, so I knew my risk level was high. Around 3 in the afternoon, I decided I better call my doctor's office, and they told me I should go to the ER. As I processed that, trying although my thinking was foggy to decide whether to call an ambulance or have Tony drive me, Tony started suddenly getting worse. His fever spiked, he started to shake and the oxygen monitor was showing some truly alarming numbers. He's an insulin dependent diabetic, so again, high risk. </p><p>And there we were, at the moment we've always known could arrive. Both of us were potentially very dangerously sick. But there was Janey. We could not, simply could not, both go to the ER. If one of us went, how could the other, just as sick, take care of Janey? Freddy was too sick to help, and William wasn't home. Although I am blessed with wonderful friends, they are not able to care for someone with Janey's level of needs, and even if they could, the local friends who I can count on for almost everything else are all over 60,not in need of being exposed to COVID. </p><p>We sat there, or lay down there, shaking and fearful. We tried to discuss options, with minds that were not at their best. We had no idea what to do.</p><p>Freddy had gotten some Tylenol earlier in the day for himself. I don't like to take Tylenol at all due to my liver problems, but in my feverish state, knowing Motrin hadn't lowered my fever at all, I decided to take a dose. Then we just waited. Tony's oxygen slowly came back to less scary numbers. I slowly started to feel less like I was going to die that moment. My fever went down to 102. We both stopped shaking. And, without really consciously making a decision, we both decided to stay home, to risk waiting it out.</p><p>It worked out. We had a rough night, but Tuesday was better. We were both still weak, had sore throats, were coughing that COVID signature dry cough, but we were okay. We tested Janey, who tested positive also (with a very faint second line) and we of course kept her home that week. She never really got more than mild cold symptoms, and Freddy also got better quickly. William never got sick (he's better than any of us with masking) Now it's mostly just a scary memory. I am still having a lot of tiredness and some brain fog, but I know we got very lucky.</p><p>But that hour...wow. It's what it all comes down to, isn't it? It's what all of us with children like Janey fear---that there will come a day we can't care for her. Mostly when I think of that time, I assume it will be when we are old (hopefully) and we die. But the horrible hour that Monday made me see that it could be before then. </p><p>I don't know what the solution is here. Even if we did have respite care, this wasn't something we could have planned ahead for. We have two adult sons in our house---but in this particular case, they couldn't help. I honestly, truly don't know what we would have done if we both got worse. All I can really picture is taking Janey in the ambulance with us. We would have figured out something---that's what we as parents do. But it's where this particular parenting life is so scary. There are so few people that are able physically and mentally to care for an adult with a toddler's level of function, and so few people that we as wary parents of a very vulnerable person can trust with our beloved child. I know you fellow travelers on this path get that. I guess we all have to just hope for health and long life, and try to push down the fears that have been keeping me up nights lately.</p><p><br /></p><p><br /></p><p><br /></p>Suzannehttp://www.blogger.com/profile/08240262747073351481noreply@blogger.com0tag:blogger.com,1999:blog-5441989712918579133.post-12627495314137075942022-09-28T22:39:00.005-04:002022-09-29T08:01:22.101-04:00A system that only rewards those able to be demanding<p> I recently read a report a consulting firm wrote about an investigation they had done into a now closed school that had been part of the Boston Public School system. None of my kids went to the school, but I read the report with interest as it was addressing larger problems within the district. In the report, I came across this passage... "Finally, we found that BPS’s current practice of more urgently addressing SPED
issues or “crises” when they are raised by vocal parents results in an inequitable system within
BPS where certain families are at a disadvantage because they may not be aware of this option
and/or able to advocate for their children in the same manner."</p><p>Wow. That hit me hard. It brought back, vividly, different times when I know that Janey missed out on help and services she should have gotten, because I was not one of those "vocal parents", because I didn't know how to forcefully push the district to address her needs urgently, because, as I've always seen it in my own mind, because I failed Janey with my own lack of knowledge or wimpy nature. But reading that sentence, I was hugely struck by how unfair it is to expect parents of special needs children to both know what to advocate for and also to know how to advocate in general. And I had a lot of advantages that many parents wouldn't have had---I speak English, I have a college degree, I'm fairly well-spoken. Imagine if I were none of those things.</p><p>When Janey was first diagnosed, she was in a half day Boston Public Schools preschool. She was there because she had a sibling preference, as her brother Freddy was a student at the same school, and she started, at age just turned 3, as a regular ed student. When she was diagnosed, a few months after starting school, we called for an IEP meeting, which was held pretty promptly. At that meeting, we were told verbally that the next year, when she was 4, for what Boston calls K1, 4 year old kindergarten, her needs were such that she would go to school all day, not half a day. We didn't push for the whole day to start right away---I was okay with waiting until she was 4.</p><p>However, at the end of her 3 year old year, I was told that she wasn't going to get one of the two full day slots in her class, that the slot had been given to someone else. </p><p>I was very upset, of course, but I didn't insist or scream or call everyone I could think of or demand. i should have. But it's not my nature, and I also didn't want her moved to another school that DID have a full day slot. I loved the school she was at. I did ask hesitantly why they couldn't create a 3rd slot, and was told that "just wasn't possible". </p><p>The slot went to another child. I won't get into any details about that, but it was pretty obvious the other family did the things I didn't do---demand, threaten to sue, make their needs very strongly known. That is what I should have done. Or that is what I've always told myself. But why? Why wouldn't the schools just do the right thing? Why did Janey getting what she needed depend on me being a parent who was informed as to what I had a right to, knowledgeable about the right people to call, and also willing to not worry about hurting feelings or alienating people? </p><p>At that first IEP meeting, we were told that Janey would be assessed for ABA services. That happened---about a year after we were first told it would. The IEP services finally started a full year and a half after the IEP meeting. I was told, over and over, that the district was swamped, that they just didn't have the resources necessary to do an evaluation, to say nothing of offer ABA. Again---I let it go. I mentioned it off and on, but I easily accepted the answers that it just wasn't possible. I don't know if earlier ABA would have made a difference or not. Over the years, the ABA services Janey has gotten have been (mostly) delivered by well meaning and kind people, but the providers seem to constantly change and to use widely different approaches. I've been very pleased with the last few years, finally, in high school, with Janey's ABA services, but did she miss some kind of crucial time for help because I didn't demand she gets services for that year and a half when she was so young?</p><p>I should have demanded more. I tell myself that all the time. But WHY? Why isn't the system set up to HELP THE CHILD WITH SPECIAL NEEDS, not to reward those with loud voices and special abilities to navigate the system? Special needs kids occur in all kinds of families. Why should Janey has missed out because we weren't good at demanding?</p><p>I've gotten more knowledgeable over the years, and I've gotten better at being persistent in getting what Janey needs. I'm still not a pro at being demanding, and I probably never will be. But in those early years, I was about as weak an advocate as I could have been.</p><p>Reading the sentence I read tonight in that report---I can't tell you how much it resonated with me. It was like someone had finally seen what I had seen all these years---a special ed. bureaucracy that seems to exist to deny help, not provide it, unless they are faced with a very specific kind of parent---one with the resources, knowledge, means and personality to get what their child needs. Boston schools have come close recently to being taken over by the state, and part of the reason is the problems in the special education central office.</p><p>The poignant part of this is that despite the lack of support from the higher level people, the rank and file of the Boston special ed. educators are truly some of the finest people you could possible imagine. I can't even start to tell you how wonderful most all of Janey's teachers have been, as well as her aides, her therapists, the school staffs from top to bottom including the clerical staff, the cafeteria workers, the principals, the IEP team leaders---I am happy to count many of those people as friends, and Janey and our family are so lucky to have them. And they are as unsupported by the bureaucracy as we are.</p><p>I know this isn't just a problem in Boston. It's a problem that exists all over, and until we decide that we will put children first, and give them what they need to succeed, it will keep existing. Let's have a system that, instead of waiting for the demanding voices to demand, listens instead to the unspoken needs of those who, for so many different reasons, don't demand but so much need the help.</p>Suzannehttp://www.blogger.com/profile/08240262747073351481noreply@blogger.com0tag:blogger.com,1999:blog-5441989712918579133.post-97959721283063722022-09-11T08:52:00.003-04:002022-09-11T08:52:29.896-04:00The Cycling Life<p> Janey turned 18 last month. I would have pictured myself writing a post about that, talking about her becoming an adult, reflecting on her childhood. I found myself unable to do that.</p><p>It hit me today what made it so hard for me to write about the milestone in Janey's life. It's the lack of forward motion in her life, and ours. Janey changes, all the time, but the changes are cycles, for the most part. There are many Janey modes---very happy Janey, talkative Janey, sleepy Janey, crying Janey, quiet content Janey, no-sleep Janey, manic Janey---and there have been, right along, since the regression and start of her autism, when she turned three. Days today, with the exception of her being older and bigger, could be days when she was 3, or 7, or 12, or 15.</p><p>I'm sure some who know Janey will say, and probably rightfully so to some extent, that that isn't true, that she's made progress. And who is to say what progress is? But at a very basic level, she hasn't. I think we've learned about her more, we understand her more, we know so very well what makes her tick, how to best respond to her varying states, how to keep her happy more of the time than not. But progress? I'm really not sure there has been much of that.</p><p>Does it matter? In some ways, no. We aren't holding Janey up to some standard that just doesn't work for her. We aren't working toward a goal that will never happen. She won't hold a meaningful job, she won't live on her own, she won't get married or have children, she won't drive a car or read books or go to college. Much of progress is working toward goals. The kids she started school with are going to college now, preparing for careers, maybe meeting their future spouses. The progress they have made over the years has led them to this point. I don't think it was ever in the cards that progress Janey made would do the same---so does progress matter?</p><p>The last few days have been in the mode of one of Janey's toughest personas. She is not sleeping, she is crying half the time, she is pacing and volatile and demanding. But we know it won't last. She will pass into another mode---maybe the sleeping all the time mode, or the cheerful but quiet mode, or the rare very talkative and happy mode. That's the flip side of cycling rather than progress. Progress, if you think of it as permanent change, could mean that tough behaviors will never go away, and we have learned that with Janey, if you wait it out, they do, at least for a while.</p><p>I think why it's hard for me to admit to myself, why a 18th birthday sum-up was something I couldn't write, is because in some ways, we as autism parents are sold a false bill of goods. I don't think anyone is doing this on purpose. It's more how we are as a society, and so maybe it's automatically the standard we apply to kids with autism. We believe that with the right education, the right attitude, the right therapies, the right parenting, the right foods, the right medical care, the right everything, our kids will progress. We tell that to new parents with autism. And for some kids, it happens, and they attach a causation. They assume the progress is because they did the right things. But I'm here to say---that might not be the case. You can do everything right, and your child might still not be toilet trained at age 18. They might not read. They might not talk any more than they did as a toddler. They might not be able to do basic tasks of adulthood like walk to a store by themselves and buy something. On the other hand, you might do nothing that is supposedly the right thing to do. You might be the most hands off autism parent in the world, and your child might undergo a total "cure". I honestly, truthfully have come to believe that's the nature of the autism beast. There's a natural history of each person with autism, one we have very little control over.</p><p>So---what's the deal here? Today, because of lack of sleep and days of trying to keep Janey from crying, I feel pretty down. But overall, I don't think the message is totally a negative one. I think it's one of acceptance, acceptance that goes beyond the lip service sometimes given acceptance. Janey is amazing. She's one of the coolest people in the world, one of the most interesting people, one of the most fun people. She makes me proud every day. And that isn't because of progress. It's because of who she is and always has been. That doesn't mean life with her is easy, or that we don't need a lot, lot more help that we usually can get. It means we value her for being her, not for meeting goals or checking off milestone boxes. </p><p>Happy birthday, Janey. Welcome to adulthood. It might not look like most people's adulthood, but it's just as valid, and valuable, and we celebrate the memory of your childhood and look forward to knowing you as an adult.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_ZQGSGVRnmWoQVmvm5I1sY59WIf9jeH9Qo_LnwTacbH5ZzaaVE2Gmiq_jM9wU0ggVKVcQdM7PiUDFsbUulmjkoKiCcICD0TMBB9__dBpzLLO85UCT9Hg2x-U-oaqFfoPSLY4w6KHp9TZxh7aorsrhfYYtmWa0w655Cc10ioUeUF5nVkLImk77s6WDRg/s903/IMG_6547.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="903" data-original-width="846" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_ZQGSGVRnmWoQVmvm5I1sY59WIf9jeH9Qo_LnwTacbH5ZzaaVE2Gmiq_jM9wU0ggVKVcQdM7PiUDFsbUulmjkoKiCcICD0TMBB9__dBpzLLO85UCT9Hg2x-U-oaqFfoPSLY4w6KHp9TZxh7aorsrhfYYtmWa0w655Cc10ioUeUF5nVkLImk77s6WDRg/s320/IMG_6547.jpg" width="300" /></a></div><br /><p><br /></p><p><br /></p>Suzannehttp://www.blogger.com/profile/08240262747073351481noreply@blogger.com1tag:blogger.com,1999:blog-5441989712918579133.post-56414312237238734672022-08-08T21:19:00.001-04:002022-08-08T21:25:43.104-04:00Hot and bothered<p> The last three weeks have been the hottest ever recorded in Boston, and it's been miserable. Hot weather is miserable everywhere (or it is to me) but Boston's hot weather feels like a special kind of awful---humid air but no rain and a feeling of there not being a full breath to take outside. I hate it. And so, take that into consideration when I rant here.</p><p>Janey had a tough day of school today. We got a call from her summer school teacher. He seems great, and I really liked the way he told me about her day---emphasizing the good, outlining all she was saying and why she was getting upset. She wanted to go home, and failing that, she wanted to go to the dance studio, and if she couldn't do that, she wanted to go swimming. It was too early to go home, the dance studio was closed for the summer and the pool for some reason is not available for special needs summer school students. And so she was angry. When her summer ABA therapist tried to get her to do work, she pulled her hair and then bit her (not badly, but a bite is never good). She later also tried to bite her teacher.</p><p>It's not unheard of for Janey to pull hair or bite, but it's quite unusual in the last few years. I think she was feeling what we've all been feeling---just fed up. She's tired of the heat keeping us from doing anything much fun. She is tired of schoolwork. She wants to do the things she wants to do---dance and swim and go for car rides. And she expressed what she wanted, with words, as we always ask her to, and it didn't make any difference. She lashed out. It is not acceptable for her to pull hair or bite, or to hit as she did this evening with me while I was trying to talk to her about the biting and hair pulling, but I can somewhat understand why she did.</p><p>I was feeling in a mood today before we got the call from the teacher. I read an article in the Boston Globe about a new law that allows young adults with disabilities access to colleges in Massachusetts. That is great---I am truly happy for the people that will be able to take advantage of that program. But reading about it, it soon became apparent that Janey won't be one of those people. The article acknowledged that---it said the state's total population of college aged students with serious intellectual disabilities and autism is around 3500 to 4000, but that "<span style="font-family: Georgia, Times, "Times New Roman", serif; font-size: 18px;">a smaller number are likely to seek college access under the new law".</span> Then it said that those who do will "improve their chance of employment" and that "<span style="font-family: Georgia, Times, "Times New Roman", serif; font-size: 18px;">Individual campuses will determine their own criteria for acceptance" </span>There were quotes from students who accessed college under past pilot versions of this program, and while I was very, very happy for those students, the language level in those quotes made it clear that Janey was not going to be one of those students.</p><p>And none of this is new. As I'm seeing expressed more and more, thanks to groups like the National Council on Severe Autism, people like Janey are left out not only from the mainstream but for a huge percentage of programs expressly for people with disabilities and more specifically, people with autism. We all know the key words and phrases "Must be able to follow directions" "Must be able to function with a teacher/child ratio of 4/1" "Must be able to read music" "Must not have any self-injurious behaviors" "Must be completely independent with toileting". They might as well be saying "Must not be THAT kind of autism. Must be the "good, quirky, interesting" kind of autism, not the "bad" kind. They don't say that. I am sure most people don't even think that. The truth is, I think a lot of people, even in the disability world, are not totally aware people like Janey exist.</p><p>I am weary. I don't know what the future will hold. Janey turns 18 a week from tomorrow. Tomorrow, we will be keeping her home from school---the teacher did not ask us to, but I know how her angry and lashing out moods can go, and we need to break the cycle. Because there is no plan B. We will never again take her to an emergency room. There is no respite. There is no residential home waiting for her as an adult. Hopefully, at age 22, we will find her a decent day program, once she ages out of the public schools. She won't be going to college, special new law notwithstanding. </p><p>I think parents of children like Janey are starting to speak out, and that is so important. Parents like us love our kids so much that we can be inclined to not talk about how hard it is. But if we don't, if we let Janey and all the people like Janey be without a voice, they will be left out. Nothing will change. And on a night like this one, where I am tired and hot and weary and discouraged, I can say that just can't happen.</p><p><br /></p><p><br /></p>Suzannehttp://www.blogger.com/profile/08240262747073351481noreply@blogger.com0tag:blogger.com,1999:blog-5441989712918579133.post-36319218455650048372022-07-20T12:42:00.001-04:002022-07-20T12:42:52.284-04:00As Janey nears adulthood<p> I've had a very hard time getting myself to write a blog entry lately. I think this is because next month, Janey will be 18. She will be an adult. It's hard to believe, as is the case with any child turning into an adult. But in Janey's case, it's more bittersweet than it is with most children. </p><p>I keep feeling like I need to somehow sum up Janey's childhood, to tie it up in writing. And of course I can't. And of course also, her 18th birthday is just a number. To her, it won't make a difference. She doesn't understand what it means, in any way. To us, it's going to change things mostly just in that we need to get legal guardianship of her. It won't change our daily life at all. But still---it feels like a milestone, or in some ways, like a deadline that has run out.</p><p>I guess there are two ways we can view Janey's childhood. </p><p>One way, the more positive way, is that it's been a journey to acceptance, to understanding. I can say a few things completely honestly. Janey's intellectual disability, which is very significant, seems completely unimportant to me in terms of how I see her. I don't think it means a lot in terms of who she is, her core personality, her Janey-ness. I can also say that she is a joy to us, that Tony and I can't picture what our life would be without her, that we love her as much as it's possible to love someone.</p><p>I noticed as writing that last paragraph that it wasn't really about Janey. It's about our feelings toward her. And that is mostly because I truly have no idea how Janey feels about her life. But I hope she would also say that as the years of her childhood went by, things got better. We came to understand what she liked and what she didn't, we got her into schools that increasingly valued her and made her days interesting, we learned what we could ask her to do and what she wasn't going to be able to do. I hope she is content with her life at this point.</p><p>The other way to view her childhood is, well, in some ways a tragedy, a failure. I don't say that because it's how I feel about it, but looking at it from the outside, I am sure that some might. She went from a two year old who talked a lot, and who despite not walking until very late, seems destined to be a typical child, to a near 18 year old who has never, ever recovered speech after her huge regression to anywhere close to her two year old level. Academics have never really kicked in for her. She might know a few letters and numbers here and there, but she can't write, can't read, can't do any math. She speaks in familiar phrases, with very few exceptions. She isn't toilet trained completely, she struggles to dress herself, she will never be able to live alone or hold a job. She is not one of the autism-overcoming success stories that inspiring books or articles tell of.</p><p>But maybe there's a third way of looking at it. I thought of this when seeing Facebook posts about girls she, long ago, was in preschool with. They were graduating from high school, going to proms, being valedictorians, getting accepted to college. I might have thought, once, that this would be hard for me to see, but, in total honesty, it wasn't. I was happy for those girls, very happy. I didn't think about how Janey wasn't doing those things. What kept coming into my head was "They are living their path. Janey is living hers"</p><p>None of us live with any guarantees or certainties about how our lives will turn out. No-one can say, when holding their precious newborn for the first time, what path that child's life will take. What if we radically accepted that, if we were able to just celebrate what our child does do, what she brings to the world? I'm saying this while fully admitting I can't do that totally. Part of the reason, much of the reason, is that I don't know if Janey wants her life to be the way it is. I just don't know that. I will write more about my thoughts on that in another blog entries, hopefully soon. But I will say it's not really up to me, it's not something I should say, to decide if Janey's life is a triumph or a tragedy or somewhere in-between. And I think a source of much of my sadness when thinking about her life is that she herself can't tell me that answer.</p><p>So---I can't sum up Janey's childhood. But I'll say this. It's been quite a ride. And I know it will continue to be so. And I will continue to write about it, maybe more than I have lately, because autism doesn't end with the end of childhood. Janey, we will be with you as long as we draw breath, and we very much hope we can give you the adulthood you deserve.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8Vxnz6JHyEnU8Daa0NPfxpsdro6ST1VYU2QcSCozOSwhWT-B7PFEln6JreJlN3fbzD12PDH_W5mL1Xy9T60UKF7XQ5n5b0hpx4h5SVSZwV0IOPvnPoTCuvHF6pbQiKngBzeGULYaqR88DIq3Hp8UkQQb-EpB3Geuu3YRECyw-JQuygRHWqdgxtmhbtQ/s903/OriginalPhoto-669507884.373583.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="903" data-original-width="677" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8Vxnz6JHyEnU8Daa0NPfxpsdro6ST1VYU2QcSCozOSwhWT-B7PFEln6JreJlN3fbzD12PDH_W5mL1Xy9T60UKF7XQ5n5b0hpx4h5SVSZwV0IOPvnPoTCuvHF6pbQiKngBzeGULYaqR88DIq3Hp8UkQQb-EpB3Geuu3YRECyw-JQuygRHWqdgxtmhbtQ/s320/OriginalPhoto-669507884.373583.jpg" width="240" /></a></div><br /><p><br /></p><p><br /></p>Suzannehttp://www.blogger.com/profile/08240262747073351481noreply@blogger.com0tag:blogger.com,1999:blog-5441989712918579133.post-36526707894618184642022-04-14T09:50:00.002-04:002022-04-14T09:55:07.704-04:00The Things Janey Cannot Change---a plea for serenity<p> Last night, while Janey was lingering in the shower after I washed her hair, she said "Want to get out?" I knew what this meant, and it wasn't that she wanted to get out. She wanted me to adjust the water, to make it hotter or colder. </p><p>I started to reflect then, and kept reflecting all night and into today, on how little influence time and examples and corrections seem to have on Janey. For years and years and years now, whenever she has said "Want to get out?" while in the shower, I've tried to get her to say what she really means. I've said "Do you really want to get out, or do you want me to fix the water?" I've tried taking her at her word, and reaching in to help her get out. I've tried getting her to repeat "I want you to fix the water" before I will do it. I've tried everything I can think of. And still, Janey asks to get out when that's not what she means.</p><p>I can think of so many other examples like this. One that keeps coming to mind started at age four, when she first starting with ABA. The therapist had a Slinky Janey liked, and Janey would ask for it saying "Yoyo?" I think she started calling it that because she liked to have it bounce up and down, like a yoyo. The therapist seemed to feel it was important to have Janey ask for it correctly, and would never give it to her unless she said Slinky. And Janey never would say "slinky" unless she was prompted to, no matter how much she liked the Slinky. Last month, I showed Janey a slinky from some box of sensory toys I'd gotten. Janey grabbed it, saying, of course, "Yoyo!" I don't remember Janey playing with a Slinky in all the 13 years since she was four, and if she did, I'm sure no-one called it a yoyo. But that's her name for it, and it didn't change.</p><p>When Janey wants us to put a show on for her, and we ask which one she wants, she says "This one!" Although we are driven crazy by this, and we are super motivated to get her to be more specific, although we have tried every single idea we could possibly think up to get her to stop the whole "This one!" bit, it doesn't work. She still says it, every time.</p><p>The same unchanging Janey shows up in ways besides talking. She is drawn to beds when she has a full bladder, with predictable results. Believe me, she knows that's not a behavior we like. Believe me, we have tried extremely hard to stop her from that behavior. But it continues, year after year after year. Janey likes to rock in the car to music. Doing this rubs her neck against the seat belt, and cuts into her neck at times. I'm sure this hurts, but even that doesn't change her rocking. Janey stuffs her mouth full of foods she likes, especially salami. We have tried so hard to stop this---giving her only little pieces at a time, staying near her and constantly reminding her to chew and swallow before taking more, cutting off her salami supply---all to no avail. </p><p>It's hard to understand why Janey persists with behaviors and speech and routines that just don't work well, or actively can hurt her, or that provoke non-positive reactions. I have to assume it's very, very, very hard for her to change a behavior or label or phrase once it's established. This worries me. We are used to her. We get frustrated, but we love her and accept her, even sometimes through gritted teeth. But the wider world? The world without us with her? I can see how she could seem willful, stubborn, provoking. I can see how it would be hard for others to understand the depth of her mental barriers to change.</p><p>By this point, we've accepted that Janey simply can't change in some ways. It's not like she doesn't learn when she can. Anyone who has seen her hands flying using her iPhone or navigating or a web browser, or singing obscure verses of Christmas carols knows she can learn some things extremely well. And I'm sure she would want to be able to effectively communicate with us; I'm sure she doesn't like hurting her neck or choking on too much food; I'm sure she's tired of our angry reactions to wet beds. And I know we are motivated to do whatever we can possibly do to try to help her learn the stuck-in-wrong words or behaviors. We, and she, just can't do it.</p><p>What is my message here? I guess it's to plead for the world's understanding for Janey and all the others like Janey. They are doing their best. Those of us working with them are doing their bests. But as the Serenity Prayers says, even to a non-religious heart like mine, let's all work on serenity to accept the things we can't change.</p><p>Here's a picture taken today of my bewildering, beloved Janey.</p><p><br /></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9BlgpPvG6QwdchqzkrAKx42wt7wjj77nh5e-m082kqICYVLeye9rSlEv95g7TDrGzRJ7tIZNlz5GUABnAwki8gnFyifSFEVTq-TXKqah-z0DcY3iVC5fJjga_gd0sKehXePpVbqAfT9ppZliXNGWAP366OXVFgvizVLEL4Fj04mgzcmrXaClULBNlVQ/s2048/278256358_10223765914770072_7222809467815691430_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9BlgpPvG6QwdchqzkrAKx42wt7wjj77nh5e-m082kqICYVLeye9rSlEv95g7TDrGzRJ7tIZNlz5GUABnAwki8gnFyifSFEVTq-TXKqah-z0DcY3iVC5fJjga_gd0sKehXePpVbqAfT9ppZliXNGWAP366OXVFgvizVLEL4Fj04mgzcmrXaClULBNlVQ/s320/278256358_10223765914770072_7222809467815691430_n.jpg" width="240" /></a></div><br />Suzannehttp://www.blogger.com/profile/08240262747073351481noreply@blogger.com2tag:blogger.com,1999:blog-5441989712918579133.post-7010091531459782662022-04-02T10:04:00.001-04:002022-04-02T10:34:35.687-04:00Autism Awareness/Acceptance/Action Day<p> The name of this day, April 2nd, has changed and changed over the years I've been living the autism parenting life. I thought I'd write a little about each name's meaning to me.</p><p><b>Awareness</b></p><p>Well, as I've said other years, I don't think it would be possible for me to be much more aware of autism than I already am, at least Janey's form of it. The name of her form of autism is another thing that has changed over the years---low functioning autism, then severe autism, now it seems, Stage 3 autism. Whatever you want to call it, those of us who love a child with it are aware of it. For some years there, it seemed that we were being somewhat silenced by the greater autism community when it came to talking about it. I can understand some of that. Those with a less severe form of autism wanted to emphasize the positive, and I like that in a lot of ways. There is so much positive about Janey, and others like her. But there is also much in her life that is hard for her, very hard. And much about raising her that is hard for us as parents.</p><p>So, if you didn't know Janey, how could I describe her that would make you aware of her? Well, she is 17. She's a beautiful, fascinating teenager. She makes us laugh most every day, and surprises us and fills us with pride and happiness most every day. Unlike what the media would often have you believe about girls with autism, though, she doesn't "mask". If you met her, you would probably know within a minute that she was autistic. Her speech is limited. A full sentence is unusual for her. Even more unusual is talking that is anything other than either a request or demand, or a scripted repeat of something she's heard. She is not conversational, ever. Her sleep is our biggest challenge these days, as about two nights a week, she simply doesn't sleep at all. She is not fully, consistently toilet trained. She doesn't read or write. She doesn't really know her letters or numbers or colors, at least in any useful way. She is very musical---we suspect she has perfect pitch, and we are pretty sure she can remember every song she's ever heard. She will eat anything---she loves vegetables. She spends much of her free time watching the same videos and movies over and over and over. She is our joy.</p><p>There's a saying you hear a lot, "if you know one person with autism, you know one person with autism". There is really no typical person with autism, any more than there is one typical person without autism. But from meeting so many other amazing mothers and fathers of girls like Janey, we do see similar interests and traits popping up. Strangely, we also often see similar appearances. It makes me wonder if there is some genetic connection that ties together girls on the more severe end of the spectrum. It's one of the reasons I think it's so important to be able to talk honestly about our girls---to figure mysteries like that out.</p><p><b>Acceptance</b> </p><p>In saying acceptance, I assume we are talking about acceptance by the wider world, not parents of kids like Janey. As parents, acceptance seems like a pretty silly word for what we feel. Of course we accept Janey. We adore her. She's our daughter. But the bigger world? I was thinking about that last night, at least our corner of the wider world accepting our particular child with autism.</p><p>I was surprised, as my mind wandered, to remember vividly some of the worst moments of non-acceptance, surprised because on the whole, I think Janey is pretty well accepted. She is known at the places she's taken most, and is like a celebrity at some of them, like the grocery store or the 7/11. At each of the three schools she's attended, we've been told she is probably the best known student at the school, with everyone enjoying their interactions with her. It is more common for us to get a smile or a kind comment from strangers than to get anything less positive.</p><p>But even the few bad moments---they still sting. There was the time a woman in a grocery store muttered a swear and a slur about her. There was the man on a commuter rail who yelled out "Can't you put a stop to that?" when she cheerfully repeating a script. There was the horrible first visit to her psychiatrist, who shared an office with an internist, whose secretaries told us we couldn't be in "their" waiting room because she was screaming and "she's disturbing the patients", despite the fact we were there, in desperation, to see someone about her having been screaming for days on end. There was Children's Hospital, where quite literally she was not allowed out of her room for her six day stay. There was, although I do understand and accept the reasons, the wonderful inclusion school she attended until grade 3, and the day I was told they could no longer handle her, although their mission was to educate children with all disabilities along with typical peers. And there are the many, many places and programs and experiences we simply don't even try to join---camps and splash parks and restaurants and most stores and concerts and libraries and so much else, places that her behavior would not be accepted.</p><p>And so there's still a long way to go with acceptance. I feel guilty, often, that I don't push more for acceptance. In an ideal world, Janey would be accepted anywhere public, any time, like anyone else. I sometimes think about how it would be if some race or nationality or religion or gender or so on was not accepted at all the places Janey would not be accepted at---if schools or camps or restaurants or concerts said they would not accept a person because of something that was a part of them they couldn't change. We'd be outraged. But I'm not usually outraged. Maybe I do need to really internalize acceptance or externalize it---to push for a world of true acceptance. It's not a battle I have the energy for, much of the time, and that is not something I like about myself.</p><p><b>Action</b></p><p>Action---where even to start? I could write a book, probably 3 or 4 books, about actions that would help make Janey's life better. But of the three---awareness, acceptance, action---action is by far the least actually done. I could attend a support group most every day of year for parents like myself. I could introduce Janey to the world and cultivate acceptance, and I can write here about her and work on both awareness and acceptance. But action? That's a lot harder. That takes money and work, not just a change of mindset, and honestly, I don't think much has changed over my years in the autism world, nothing much has improved in terms of actual action.</p><p>What do I want done? Number one---respite. There is no respite. There never has been, not in a form we will use. We will not leave Janey with anyone one on one that we don't know well enough to trust completely. We just can't. What we need for respite is a program with trained workers, with backup if someone needs it, with regulations in place. Programs like that exist in most every other country, but not here. Most countries have a system of overnight or weekend respite parents like us can use for at least several weekends a year. Not here. We have no respite. Every day, every night, every moment Janey is not in school, we are on duty. Always. </p><p>We have been very lucky with Janey's schooling. We've had unbelievably good teachers right down the line, with almost no exceptions. We have had wonderful therapists and paras, too. But autism schooling in the US is a patchwork. Not everyone is as lucky as us. And even for us, there is troubling turnover and busses that just don't show up, and funding that is always in risk of going away, and of course the nightmare of the pandemic, with basically a full year without any schooling at all, since Zoom meeting style teaching simply didn't work for Janey. Our country needs a plan to educate all people with autism, one that will give them the best possible chance to reach their fullest potential.</p><p>And we are now heading fast toward Janey's adult years. From what I read, it's going to be a challenge even to find a day program for her. If we wanted to have her move to a group home---well, that's a pipe dream. Waiting lists, from what I hear, run in the decades. And from those I've heard about that used group homes, the lack of good pay and respect for the staff has led to some horrible situations where people are hired that should never have been. The tales of abuse of people like Janey---no. Unless our country takes steps to provide safe and actually available group housing, Janey will always live at home. Thank goodness she has brothers, because no matter how much we would like to, Tony and I won't live forever. Kids with autism don't stay kids. Our country needs to face that, and to put actual funds and labor into giving the adult autism population life, liberty and the pursuit of happiness the rest of us supposedly have.</p><p>Whatever name this day has, I've come to be glad there is a day for autism. At a very basic level, I'm glad because it's a day for my daughter. I love you, Janey! I wish the whole world was aware of how wonderful you are. I wish the whole world accepted you fully. And I wish the whole world would take action to give you the best future possible.</p>Suzannehttp://www.blogger.com/profile/08240262747073351481noreply@blogger.com1tag:blogger.com,1999:blog-5441989712918579133.post-67574022084255709012022-02-11T09:54:00.007-05:002022-02-11T11:33:00.653-05:00Never Again<p> Let's imagine, for a minute, that your child had an illness. It is a serious illness, enough so going to school has become very troublesome, so that they scream much of the day, so they don't sleep, so they are in obvious pain. Let's imagine this illness is physical, not what we call mental. Imagine that everyone agrees the child needs help, urgently. What would you do?</p><p>You'd probably go to the hospital. So let's picture a scene there. The hospital agrees you child is very ill, and needs longer term hospitalization to deal with this illness. However, there are very few hospitals around that treat this particular form of illness, and they are full. There might be an opening in a day, there might an opening in a week, there might be an opening in a month. It might be longer than that. </p><p>Let's say the hospital says, that despite the fact they themselves can't treat the illness, your child needs to stay there until there's an opening at the specialized hospital. You can't take them home and care for them there, even if you feel able to, because then you'll lose your place in line for the specialized care. </p><p>You are in the ER, being told this. There might be a room available at the hospital that can't treat your child but insists on keeping them there. Or there might not be, in which case you first must just stay in an ER room until a regular room is available. This might be for a few hours. Or it might be days.</p><p>When the room, essentially a waiting room, is available, you are moved there. And told your child can't leave that room, for any reason, until you get a bed at the specialized hospital. You aren't going to be treated there, aside from having your child's vitals taken every four hours. You are just going to wait. And while you wait, there is going to be someone posted in your room, someone called a sitter, who does just that, sits there around the clock watching you and your child, to make sure they don't leave the room.</p><p>Because there are so few openings at the specialized hospital, you wait and wait and wait. You wait there, despite the fact your child is very ill, just waiting.</p><p>When finally, finally, there is a space for your child (and the specialized hospital accepts them---decides they are the right age and sex and type of child they want, which is totally their decision and based on rules you aren't told), your child is moved, by an ambulance ride, to the specialized hospital.</p><p>When you and your child get to that hospital, you are told you have to leave them there, alone. You can visit, but there are very strict rules about your visits, what time they can be and how long they can last. But you breath a sign of relief. Finally, your child is going to get some help.</p><p>Except they aren't. The hospital houses them there until insurance will no longer pay for them to be there. Then they tell you the stay is over. They don't give you any advice for how to treat the illness at home. They don't talk to your child's school about how to treat the illness. They might give you a new medication, which might or might not help, but they don't follow up on if it does. When you take your child home, they are no better than when the whole ordeal started. You beg the hospital for at least some guidance. They send you a report with generic information, information you have long ago read on the internet. In places where your child's name is mentioned in the report, sometimes it's the right name, sometimes it's a whole different child's name, because the whole thing is cut and pasted badly. </p><p>And your child is home. Worse for wear, as are you. Stunned, overwhelmed, horrified. And you have learned one valuable lesson. Don't take your child to the hospital looking for help with this illness. Ever, ever again. </p><p>If you haven't figured it out, you are probably saying "That would never happen! Our society would never treat a sick child that way". But you probably have figured out this story is Janey's and our story, and the illness is not a physical one, but a mental one, a flare up of symptoms related to her autism. We lived this story. You can read about it starting with this entry ( <a href="http://autismasithappens.blogspot.com/2014/11/a-whole-new-world-part-1_16.html" target="_blank">here's the link )</a> There are a long series of them, giving pretty much every detail of the ordeal when Janey was 10, her six day stay as a "boarder" at Children's Hospital (starting with a day in the ER that stands out in my mind as the most hellish day of my life), and then her 18 day useless stay at a psychiatric hospital in Rhode Island.</p><p>I am thinking of all this because Janey is having quite a spike in her behaviors the last few weeks. At home, it's been tough but not critically tough. She's been screaming a lot, but not all the time, she's been sleeping quite badly, but there have been times she slept even worse. But at school, she's been screaming all day. She hasn't been like that since starting high school, and understandably, her wonderful teachers and team there are concerned and upset. Her teacher called yesterday to talk to me about it, and one of the ideas they've had is that she might need to be hospitalized in a psychiatric hospital to adjust her medication. In an ideal world, this would be a very reasonable idea. In our real world---well, let's just says the very idea of it sent me into a wave of post-traumatic stress that was...bad. </p><p>In the seven years since that awful day we went to Children's when Janey was in crisis, things have gotten worse and worse, by all reports, in terms of how "easy" it is to get a child mental health help in a psychiatric hospital. COVID, especially, has lead to an increase in need and decrease in beds. I've read so many horror stories of children being "boarded", the term for being held at a general hospital waiting for a psychiatric hospital, for long, long periods---sometimes many months. I will not ever take Janey to an ER for psychiatric help. It will never happen. </p><p>I would consider a direct admission to a psychiatric hospital for children if it were not the one she went to before. I know there must be better ones. We are told there is one in New Hampshire. We were told about that one back seven years ago---told it was one of only 2 in our area, which is a very big area, that could deal with children with severe psychiatric needs that also had severe developmental delays. We wound up at the other one. But from everything I understand, children are basically never admitted directly to such hospitals (or I won't say never, as I've learned over the years that if you know the exactly right people and have the exactly right means, things can happen for you, but we don't know those people or have those means). </p><p>It's been striking me, thinking about this all last night as I didn't sleep (and Janey didn't sleep, and she is home today, because school when she's in this state really isn't doing anyone, mostly her, any good), that the whole deal feels almost like a punishment. You have a child who needs help with the symptoms of mental illness? Well, we're going to show you just how we feel about that. We're going to put you and your child through hell for wanting that help. We are going to make any help out there extremely hard to get. We are going to show you that they have the "bad" kind of illness, not the "good" kind of illness that hospitals are really meant to treat. We're going to teach you to just shut up and bear it all, even if what you are bearing is seeing your child in anguish. I'm sure no-one is consciously doing this, but it's happening, anyway. Society is not putting its resources into helping those with severe mental illness. </p><p>And so---what do we do? This is long enough for now, but next time I'm going to write about my daydreams of a system that would actually help Janey and all the kids like Janey out there. Until then, we'll go on as we have gone on. We love our Janey more than words can say, and we will give her our best for the rest of our lives. That we can do, but the incredible person that is our sweet Jane deserves more.</p><p><br /></p><p><br /></p><p><br /></p>Suzannehttp://www.blogger.com/profile/08240262747073351481noreply@blogger.com1tag:blogger.com,1999:blog-5441989712918579133.post-84980060846988910182022-01-24T07:31:00.004-05:002022-01-24T11:02:25.420-05:00Stress<p> We've all seen the articles. They are all over women's magazines, wellness websites, those flyers in doctor's offices. Stress is harmful to your health. But hey, here's some ways to reduce your stress! I'm looking at one now, filled with gems like deep breathing, practicing yoga, taking a bath, reducing your caffeine intake, learning to say no, and, of course, practicing mindfulness. Okay. Yeah. After I'm done laughing, I feel like crying, the kind of crying that comes from being completely unseen by those who are not familiar with the world of severe special needs.</p><p>Let's go over a day with Janey. We'll start with the morning routine. We wake her up (that is, assuming she's ever slept, which is a big if). We determine if the bed needs a complete change, and if she needs a shower due to...you know. We determine her mood---is she screaming and biting herself? Or manically laughing? All this affects how long it will take to get her dressed and ready. Because---we have to be out there soon waiting for a school bus that might or might not show up within a range of time that is up to an hour either way. But I'm sure a little caffeine reduction and some good old deep breathing is what the situation calls for.</p><p>Then---the "easy" part of the day. Janey is at school. Now, we only have to hurry and do all the things that are impossible to do while caring for her---bills, housework, shopping, and oftentimes, sleeping. In there someplace, we need to do long term planning. Janey is 17. There's a lot to be done before she turns 18, and we need to get on that---NOW. By the time we can draw a breath, the bus is heading home. We haven't gotten in a bath, or any mindfulness---shoot! We have gotten in a lot of mind-full-of-stress-ness, though---the worry that never quite leaves us every time Janey isn't within our sight. We love and trust her teachers and aides and therapists, but we don't know how her day is going. Is she having a tough day? Has someone else having a bad day of their own yelled at her? Is she confused, scared, bored, overwhelmed? Is she safe? The stress of having a child who doesn't communicate much at all with us---that base level of stress, even on the easiest day, is never, ever gone.</p><p>And now, Janey is home. We are happy to see her. We hope she is happy to see us. Some days, she gets off the bus with smiles. Other days, with screams. We check if her notebook is written in. Did she have a tough day? Did she sleep all day at school after a sleepless night? Did she have a lot of "energy" (read that as manic energy, pacing and repeating phrases and laughing randomly)? We hang on every word written, desperate for a glimpse of her life away from us. </p><p>The afternoon and evening. Janey, even in the best of moods, makes constant demands---"Want to go for a car ride? Want a shower time? Want tuna? Want salami? Want cheese? Want Buzz Lightyear?" and the non-specific but highly insistent "I NEED HELP!" Sometimes, we try the stress reduction technique of learning to say no. Any no, even after minutes and hours and days of yesses, is met with a scream, some arm biting, stomping. As we deep breath our heads off, Janey repeats the demand that caused the no, every minute for hours. The things she asks for, I know, are things to relieve her own stress, stress which I am quite sure is as pervasive and severe as ours. The warm water of the shower, the music and movement in the car, the videos repeated over and over---she needs stress relief too, and she doesn't know, isn't able to know, how that stress relief works on us---how stressful it is to be her parent, to want to do anything on earth to help her, even as we are falling apart.</p><p>Then---bedtime. Or not. These days, a night where Janey falls asleep at a reasonable hour and stays asleep all night happens probably 1 out of 3 nights. The other nights---another 1 out of 3 feature short sleep, with her falling asleep easily but waking at 1 or 2 am to never go back to sleep, or her finally falling asleep at midnight or 1. The remaining third---no sleep nights. No sleep at all. None. That was last night. And when Janey doesn't sleep, ain't nobody sleeping. She constantly wakes us, either by asking for the same things as daytime---"Salami! Shower!" or by screaming, or by turning on the TV or one of the devices she has, loud and endless..."It's fun to act like animals! Fancy Nancy! Little Einsteins! Forky! Three Little Kittens!" ... the tunes that play on constant repeat, in my mind even when they are not actually being blasted.</p><p>And then it's morning, and it all starts again.</p><p>Janey is the love of our lives. She is amazing, fascinating, beautiful. And it is not her fault, in any way at all, that the stress of caring for her is...there is so much I want to say here and I won't. And I won't do what I am hugely prone to do, what I am sure many of you are prone to do, to minimize, to worry that speaking the truth of the stress is somehow wrong, to pretend that I'm fine. I wouldn't do that because I know I'm not alone here, that others are living this life, and that one of the hugest stressors is feeling alone in your struggles. You aren't. I'm not. And with that, I'm having another cup of coffee---today, as every day, is not the day to reduce my caffeine.</p>Suzannehttp://www.blogger.com/profile/08240262747073351481noreply@blogger.com1tag:blogger.com,1999:blog-5441989712918579133.post-18117696463745391162022-01-04T23:28:00.005-05:002022-01-04T23:47:26.550-05:00Impossible things happen every day<p> As I write this, it's nearly 11 pm, and Janey is wide awake. Not an uncommon thing, to be sure, and I'm pretty sure she's not going to sleep at all tonight. We've learned to tell, over the years, if it's going to be a sleeping night or not. </p><p>What I've been thinking about a lot over this past month is how Janey's kind of sleep issues just are not much addressed in any kind of sleep advice I've ever read. And I think that's because sleep experts, or parenting experts, or autism experts, unless they have a child themselves with Janey's kind of sleep problems, just don't believe us as parents. </p><p>And it's not just sleep, I've realized over the years. I don't think the experts believe how much the wrong food can affect Janey. I don't think they believe that she can know so many words but be able to express herself verbally in such a limited way. I don't think they believe that it is impossible to fully toilet train her. I don't think they believe she can show physical illness in the ways she can. I don't think they believe the extremes. </p><p>Or if they do, they don't know what to do with the kind of extremes we as parents deal with. It's easier to just discount what we are telling them and dealing with than to accept there might be areas they aren't up to helping with.</p><p>With the sleep---Janey can and has literally gone 3 nights with a total of 4 hours of sleep. Not per night---TOTAL over the three days and three nights. And she can still function---in fact, can still be jumping up and down and giddy on day three. This happened over Christmas break, and it's happened before. Before the break, we saw the other extreme---a two week period where Janey slept pretty much all day and night. She came home from school and went to sleep, she woke up enough to sleepily go to school, she slept off and on there, she came home from school, ate a lot, and went to sleep again. We tried near the end of these 2 weeks to talk to her pediatrician, to see her, but before that was possible (with the COVID surge, sleep issues are a low priority), the spell was over. It was like she decided to catch up on all the lost sleep of many months, and once she did, she went back to little sleep.</p><p>With words and speech---I don't think any speech expert has ever really gotten what I've tried to explain about Janey. She has the words, in her head. But she can't access them easily. One of the only ways I know she DOES have the words is the rare time I've caught her in exactly the right mood to do flash cards. I ask her if she wants to, and if she does, she will name things that amaze me. Recently, she identified a swan, broccoli, a lime, a skyscraper, a slug, a person crocheting---all within about a minute, all words I've never once heard her say before. But the advice I've gotten or read to encourage speech never addresses how to help her retrieve the words she knows.</p><p>And toilet training---that's enough to set me off on a rant. How is it that Janey has at several points been fully trained, only to lose the skill? How is it that most of the time, she is trained at school but not at home? Why does she often need what I'll call a severe change in the night, when she's been asleep? You can write a hundred expert books of advice about motivation, about routine---those aren't the issues here. Believe me, if expert advice worked for Janey in that area, we'd have been done with this particular problem many years ago.</p><p>The example of Janey not lining up with what is said to be possible that most haunts me---Janey motionless in bed in the hospital. A doctor shaking the bed. Janey doesn't move or make a sound, and the doctor says, almost with a chuckle, "well, she certainly doesn't have peritonitis!" But she did, as a result of an appendix that at that point had been ruptured for two days, and would be ruptured another day before finally, she had life saving emergency surgery. But someone with peritonitis CAN'T keep from screaming and moving when their bed is shaken. They just CAN'T---unless they do, as Janey did.</p><p>My fellow autism parents are reading this with their own lists in mind of the "impossible" things their beloved kids do or don't do, I'm sure. I'm preaching to the choir. But why is it so very hard to get believed? Is it because it's easier to give advice based on what you think is true, not what some crazed parents is telling you is true?</p><p>This is why I try very hard to not discount what others might think, in all areas of life, to be impossible, insane, foolish. I know what it's like to be awake night after night caring for a child that can't possibly not be sleeping, to be astonished by the words my minimally verbal child is saying with ease, to have a critically ill child not being treated promptly because she is reacting in an impossible way. Listen to parents, especially when they are speaking for children that are impossibly complex. I love you, my incredible Janey.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEgYnBOxT9OKMVLjG4uYzcwXINW0K6xEaxxx8BG1mHPpIWAb8hw4-YNUZB87oQadymyOzAV2SjUqHDgavpOPnx8WdxY4rNhsBHqG0E29t_co6kyw-OXvBv3YGk0ivbdlN98bg8mfuZn5J_-RnY7_lIH18YMMJp_kXgc_d2_zOyd4rxUY8N6vCmYL0jWtfw=s903" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="903" data-original-width="677" height="320" src="https://blogger.googleusercontent.com/img/a/AVvXsEgYnBOxT9OKMVLjG4uYzcwXINW0K6xEaxxx8BG1mHPpIWAb8hw4-YNUZB87oQadymyOzAV2SjUqHDgavpOPnx8WdxY4rNhsBHqG0E29t_co6kyw-OXvBv3YGk0ivbdlN98bg8mfuZn5J_-RnY7_lIH18YMMJp_kXgc_d2_zOyd4rxUY8N6vCmYL0jWtfw=s320" width="240" /></a></div><br /><p></p><p><br /></p><p><br /></p>Suzannehttp://www.blogger.com/profile/08240262747073351481noreply@blogger.com0tag:blogger.com,1999:blog-5441989712918579133.post-47437499312754295862021-11-22T21:56:00.003-05:002021-11-22T21:56:19.400-05:00Except for sleep...<p> When people ask us lately how things are going for Janey, we usually answer that things are going quite well, except for sleep. That's a big "except for"!</p><p>When Janey was younger, sleep was one of her lesser issues. She actually slept pretty well. There would be a tough night (or what we thought back then was a tough night) now and then, and once in a long while a very tough, almost no sleep night, but for the most part, she slept fairly normally. This changed probably three or four years ago.</p><p>Now, it's a fairly common event for Janey to not sleep at all. All night, not a wink. No moments of drowsing off, no hour of restless sleep, no nothing. Just no sleep.</p><p>It's also quite common for Janey to sleep amazingly little for nights on end. A recent weekend, she slept 5 hours over the course of three nights. </p><p>On the other end of things, sometimes Janey sleeps for a very long time---12 or 13 hours. This isn't always after a sleepless night, as you'd think, but during a whole series of nights when her sleep is better. Often there will be a night of normal sleep, a long night of sleep and then another night of normal sleep---and then...usually the sleepless nights start again. But even that pattern isn't a regular pattern. Often, there is no pattern at all.</p><p>There's also little pattern to how Janey does after not sleeping. Sometimes we get reports from school that she's very sleepy, and even that they had to let her sleep a lot of the day. Or if she's home, we see that---times when she's just going to sleep all day even though we don't want her to, because you would think it would lead to another sleepless night. But it doesn't always---sometimes she sleeps all day and then all night. Other times, she is perfectly fine after not sleeping---as lively and happy as the day is long, and it's pretty long for us as parents, those days.</p><p>As you can see, there is little consistency to Janey's sleep. This is hard on us, and I'm sure even harder on her. I can't imagine how it feels to just not be tired at a time when you know people want to sleep, and even more how it would be if there isn't much you can do to entertain yourself</p><p>When Janey doesn't sleep, either Tony or I don't sleep, or we try not to. Sometimes it's impossible not to drift off for a minute, and usually, Janey is okay when we do that. She is not an eloper---she never tries to leave the house. She usually spends her long awake nights playing with her devises, watching the same videos over and over, including the dreaded Finger Family, the video that must have been designed as torture for parents. The biggest problem is when she decides to have a snack. Chips wind up all over the house, stepped on into little pieces, ice cream is left out and melts onto her bed, soda is spilled all over the floor. </p><p>After years of not getting her period for some reason we (and doctors) never figured out, Janey seems to be getting it more regularly now, and I'm sure those cycles have a part in the sleeping and not sleeping, although we can't quite match them up with any part of a cycle. Another factor is what Janey eats. I've often talked about how chocolate can keep her up for days, and most everyone knows not to give her chocolate. However, Tony and I are probably to blame for one recent awful stretch of sleepless nights, because we let her have regular coffee for a few days VERY first thing in the morning, thinking that would be okay. She loves coffee---we all love coffee---and she is 17, certainly old enough to have coffee with the rest of us. But from now on, she will have her own "special" coffee, decaf.</p><p>I don't see the sleep problem getting better any time soon. We have tried the medications her pediatrician has said are okay to try, and they make little difference. We have tried long walks during the day in addition to making sure she gets a lot of other exercise, we have tried routines, we have tried strict bedtimes, we've tried most everything we can think of. When Janey is determined not to sleep, she isn't going to sleep (and when she is determined TO sleep, she is going to sleep). Luckily, since Tony has retired, we can usually get a nap during the day if we need to, trading off if Janey is home. </p><p>From what I've heard from all of you out there, Janey's sleep issues are far from unique. I wonder if this is a problem more with girls with autism than with boys, due to hormones or just the different nature of autism in girls? Although I wish all of you could have a good night's sleep every night, it does often help thinking of others out there awake like we are, others who live for that first cup of (non-special, fully caffeinated) coffee. All of us in this club we probably didn't intend to join but now are lifetime members of, the club of those who care for and love a girl or woman with autism---let's raise a cup of coffee to our perplexing, fascinating and often sleepless girls.</p><p><br /></p><p><br /></p>Suzannehttp://www.blogger.com/profile/08240262747073351481noreply@blogger.com1tag:blogger.com,1999:blog-5441989712918579133.post-23468163737961207712021-10-04T09:16:00.006-04:002021-10-04T09:20:14.107-04:00Why does success have to mean progress?<p> Facebook lately gives me some memories to browse every day. I've been on the site for 12 years now, and it's fun to look back at what was on my mind four, seven, nine or more years ago to the day. Yesterday, it dealt up something cute Janey said 12 years ago, when she was 5..."Don't put your fingers in ice cream! That's NOT funny!" which I reported I didn't know the origin of. I had a chuckle, but then started to think about how such random and funny utterances come up now and then from Janey, and that I'd still be surprised and happy to hear her say something like that today, all these years later. She hasn't progressed in her speech. She ebbs and flows, but her talking doesn't get better or worse much as the years go by.</p><p>For a minute, thinking about her lack of speech progress depressed me. She's had so many years of school, of speech therapy, of ABA, of just hearing us talk to her. Why hasn't her talking gotten better? Why hasn't she made any progress?</p><p>And then I started to think---why is the only measure of success with kids like Janey that they progress? Why are IEP goals always about reaching the next level? Why do people (us included) hang on cool things she says to see if they are heralding a new era of talking? Why does the fact that Janey stays steady with most skills not make us happy? </p><p>Progress, it strikes me, is how we separate groups of kids with autism. All kids diagnosed as being on the spectrum start out behind in some area. But the ones we call "high functioning" or "mild" are the ones that learn new skills, that come close to climbing up to the norm, that get with the program quite literally. Those like Janey, who mostly have a steady state, are by the very fact that they are the opposite of these successes considered failures. Not that anyone would say that, not that it's what we think as parents, but if you look at measurable progress and there is none---what else would it be called?</p><p>What if that wasn't how we measured kids like Janey? What if her occasional bursts of speech, her momentary shows of understanding we didn't know she had, were just seen as part of her autism? What if we didn't hang onto the idea that she should be progressing? What would we use instead to measure success? What would be our goal?</p><p>Happiness. Pleasure in daily routines. Connections to others. Just being herself, and having herself accepted as a meaningful member of society. That's another way to measure success.</p><p>If I use that as my yardstick, I think Janey is a success. She is happy much more of the time than she is sad. She enjoys her daily routine---the bus ride, school, coming home to a meal made by Tony, watching her familiar movies, taking a car ride, jumping up and down, running in the driveway. She has connections to many people---more than I do, probably. She is loved at school and home, she has fans out in the community---she's a bit of a celebrity at the grocery store. She is herself, always. As for being accepted---well, we accept her, her school accepts her, our neighbors accept her. Wider society---that's still a work in progress, the kind of progress I'm talking about here, and one that isn't her job but the job of said wider society.</p><p>I'm asked every year at her IEP meeting what my vision is for Janey. If I were totally honest at these meetings, I'd say just one thing---happiness. Let her be happy. Give her reason to be happy. Put supports in place so she is happy for all of her life. That's success.</p><p><br /></p><p><br /></p>Suzannehttp://www.blogger.com/profile/08240262747073351481noreply@blogger.com2tag:blogger.com,1999:blog-5441989712918579133.post-26512488817702665002021-08-25T11:33:00.002-04:002021-08-25T11:33:35.051-04:00Struggling a bit<p>The last three or four days have been tough ones for Janey, and for me. She's been crying a great deal, more than in ages. We had decided to take her to the doctor today if she wasn't better, not because she seems sick but just because it's so hard for her to tell us if she is sick or if something hurts, but today is a big improvement, so we are waiting on the doctor (doctor's visits being hellish when she's not happy).</p><p>We really don't know what's up with Janey. Our best guess is boredom. Summer school is over and regular school doesn't start until September 9th. Janey doesn't like there not to be school. She enjoyed summer school a lot, from all indications. She likes activity and movement and going places and doing things. Tony is doing his level best to take her for a lot of car rides, which is what she asks for day and night between tears, but the second we are home from one car ride, she starts crying for another one. The car has over 100,000 miles and is showing signs of starting to be unreliable, using a lot of oil, but besides that, constantly being on a car ride is just not a realistic way to live. (Picture is Janey on a better mood day)</p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-P8IMUUcTNkk/YSZihRo1HyI/AAAAAAACBpo/ZMX-hsTESXUsvS68UD9SIRW0RsqYhQ2ngCLcBGAsYHQ/s903/OriginalPhoto-649119824.091609.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="903" data-original-width="677" height="320" src="https://1.bp.blogspot.com/-P8IMUUcTNkk/YSZihRo1HyI/AAAAAAACBpo/ZMX-hsTESXUsvS68UD9SIRW0RsqYhQ2ngCLcBGAsYHQ/s320/OriginalPhoto-649119824.091609.jpg" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><br /></div><p></p><p>Even before this recent crying time started, I was feeling pretty depressed, more so than in probably years. Like Janey's crying, I'm not sure why. Nothing in particular had changed. I think some of it, also like Janey, was feeling let down after a great time. I went for almost a week to see my sister-in-autism-parenting, Michelle, and her family. It was a great trip, even with a 17 hour train ride out and another back (I don't fly!). I relaxed so much! It was great being with Michelle and her family---partly because I think only another autism family totally gets the life, and partly because of how much I love Michelle and all of her family, how much fun they are to be with. Coming home was hard. Not that I don't love my family more than anything, but returning to regular life after a really great break isn't easy.</p><p>Janey turned 17 last week. It was a good birthday, one of the first times I felt like she kind of got the birthday thing. She readily said she was 17 when asked, she requested it be cake time and blew out her candles with glee, she loved us singing to her---it was a very nice day. Her birthday, as most of you know, is extra special because it's also her brother Freddy's birthday. He turned 24.</p><p>Even with the birthday being a good day, birthdays are another thing that sometimes hits me hard. As Michelle and I talked a lot about, once your child is pretty much no longer a child but an adult, it's time to accept certain things just are the way they are. I am working to accept Janey will never be fully toilet trained. She will never talk in a way that is truly communicative. She will never learn to read. She will never be able to be unsupervised. She will remain much as she is---functioning at a toddler to preschool level for life. May the future prove me wrong about any of this---I'd love to be wrong. But I am not wrong. </p><p>I try very hard not to let myself get depressed or in a self-pity spiral. This isn't out of some feeling that I have to deny my feelings, or some Pollyannaish delusion. It's for a couple other reasons. One is that knowing myself, I do better if distracted. Letting myself go to dark places feeds on itself. If I make myself stay busy and chipper and active, I feel better. The other reason is that if I give in to depression, stay in bed all day, feel unable to do things, there's still Janey. Someone still needs to care for her. And Tony and I are the only ones that are available for the job, so any time I don't feel up to it, it's Tony's job. My mood and depression affects others, by putting an undue burden on Tony and leaving Janey with just one caregiver. The conventional wisdom which says all that stuff about having to care for yourself first, having to put on your oxygen mask before your child's---well, that ignores reality. Lots of things sound great in theory, but theory doesn't do much when faced with a screaming, crying daughter.</p><p>And so---what do we do? We do what all of you do. We get by. We wait eagerly for school to start. We take Janey for as many rides as we can. We comfort her as best as we are able. We trade off sleep, we trade off eating, we trade off moments to recover. </p><p>I can't give in to depression, but I can admit to it. It's a tough life. It's tough for Janey, and it's tough for us. Love to all of you out there living a similar life.<br /></p><p><br /></p><p> </p>Suzannehttp://www.blogger.com/profile/08240262747073351481noreply@blogger.com3tag:blogger.com,1999:blog-5441989712918579133.post-6707201845093874162021-07-12T23:46:00.004-04:002021-07-13T06:55:12.929-04:00The summer so far<p><br /> Janey started summer school today. I'd like to tell you how it went, but I really have no idea. She went off on the bus happily, and came home in a fairly good mood, but the time in-between is one of those black holes we as parents of kids like Janey face. There was no note in her backpack. I don't know who her teacher is. I know where the school is (it's not her regular school, as all high school students with special needs go to summer school in one place) but that's about all. If I don't find out more tomorrow, we will make some calls, but it's a tribute to my general faith in the Boston Public Schools that we are sending her at all, I think. Of course, we asked Janey about her day, but that has not once in her 13 years going to school yielded any information.</p><p>The summer up to this point? Average, I'd say---not that each day was an average day, but it hasn't been an especially good or bad summer. We've had some very hot days and some weirdly cool days---the 4th of July featured the same high temperature as last Christmas did---and we've had a good deal of rain. We've taken Janey for a lot of car rides, but as so often happens in the summer, I don't feel like we've done enough else. We've played in the driveway a good deal, which mostly means Janey runs around holding her iPhone and listening to YouTube videos. She has watched "Toy Store 4" probably 100 times. She's eaten lots and lots of food, luckily, mostly very healthy food, which is why she is able to eat from dawn until dusk and beyond without severe weight gain.</p><p>Sleep has been a problem. As Janey gets older, it's one area that is more of a problem than it used to be. Just tonight, she's been awake, asleep, awake, asleep and now awake, all since 7 pm, and it's 11:30 now. There have been lots of nights without any sleep at all, on a couple occasions, two nights in a row. To us, it seems impossible. I truly just don't know how she can do it, without napping during the days. Other times, less commonly, she'll sleep most of the day and most of the night. Her sleep just doesn't seem to have the pattern that most everyone else's sleep has. And that would be fine, except we really can't sleep when she isn't sleeping. We can catnap, but she wakes us up often and we never sleep deeply, as we really need to keep an eye on her. We are thankful she's isn't in any way an eloper. Our house has a front and a back hall with doors, so kind of an airlock, but I'd say in all her years she's only ever gone into the halls even without us once or twice. So we don't worry about her escaping, but more about her dumping food around or having toileting issues or tossing bowls onto the ground for fun (a recent new hobby)</p><p>Janey did have a filling done under general anesthesia last week, which went very well. She was happy and cheerful even going to the dentist, which to me spoke to how bored I worry she is at home. I feel guilty over this boredom, but it is so very hard to get her interested in anything new. I think I'd go out of my mind watching the same movie over and over, or taking car rides to nowhere for hours, or listening to the same music over and over while running up and down a driveway. But when I try very hard to introduce a new move, or when we try to take her for walks around the neighborhood, or to play some new driveway game, or just to shake things up a bit, she is not at all interested. Maybe it's us, because she certainly seemed to enjoy going to the dentist and to school. But still, I feel a huge amount of guilt over her limited range of entertainment. I know I've written about this before, but it's on my mind so much.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://lh3.googleusercontent.com/-4stBWHK7qgE/YO0ND5OfzyI/AAAAAAAB-VI/kznrvRDSCX4TlcBwZlEnDBE6SZiHwTUYQCLcBGAsYHQ/IMG_5196.jpg" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="903" data-original-width="677" height="240" src="https://lh3.googleusercontent.com/-4stBWHK7qgE/YO0ND5OfzyI/AAAAAAAB-VI/kznrvRDSCX4TlcBwZlEnDBE6SZiHwTUYQCLcBGAsYHQ/IMG_5196.jpg" width="180" /></a></div><br /><p></p><p>Janey will be 17 next month. That shakes me up. When I was 17, I left for college. 17 was the start of my adult life. For Janey, 17 will probably be much like 16, or 15, or 5. Does that matter to her? Is there any way I can find out? Is Janey happy with her life? Does she think about what her life is, what she wishes it was, what it can or can't be? Is it enough that most of the time now, Janey is fairly content, or is there more that we should do? Does she long for more? There are so many things I don't know about Janey, although our lives are intertwined so closely. How I wish I could ask her so many things---starting with the little things, like how school was today, and leading to the big things. Until I can, if I ever can, I feel a huge weight of obligation to make the right decisions, to provide the right enrichment, to protect her when needed, give her freedom in the little ways I can, to make her life meaningful. I hope I can do even in a small part what she deserves.</p><p><br /></p><p><br /></p><p><br /></p>Suzannehttp://www.blogger.com/profile/08240262747073351481noreply@blogger.com1tag:blogger.com,1999:blog-5441989712918579133.post-52729780626217743992021-05-19T21:47:00.000-04:002021-05-19T21:47:35.048-04:00The Question<p> A few weeks ago, I had my 5th bout of diverticulitis in 3 years, and this time, went to the emergency room, as it had been only 3 weeks since the last bout (and only about a week since finishing antibiotics for that bout). To my surprise, I wound up being admitted. I've never spent a night in a hospital for my own illness except for being born and having my three kids. It was eye-opening! I don't know if any other mother of a child with special needs has had the silly fantasy I've had, of a couple days rest in a hospital bed, guilt-free because you don't WANT to be there, but HAVE to be there. At some of the toughest moments of parenting, I've thought about how I could lay there, get food delivered to my bed, read, relax and not feel like I was being a bad mother being away from Janey. Well, as I imagine most anyone who has actually spent sick time in a hospital knows, that was a pretty deluded fantasy. I was in a double room, slept not at all due to a roommate who was having a lot of night issues which involved pain and screaming and yelling at nurses. I couldn't eat at all, due to my illness. I didn't read a bit, due to being anxious and also having a coffee withdrawal migraine that just about did me, and I felt guilty being away even under the circumstances. I stayed two nights, and was very happy to come home when I did, on heavy antibiotics and with an appointment to discuss possible surgery for my diagnosis, smoldering diverticulitis, a rare form of diverticulitis that never really goes away despite treatment, except if you just cut out the sections that have it.</p><p>I'm okay for now, but what looking back hits me the hardest about the whole experience is the question I was asked by a doctor as I was being admitted. I should have seen it coming---I know it's something they ask, but I didn't. After going over my medical history, medications, stuff like, the doctor said "Now I'm going to ask you something else. If something unforeseen and tragic were to happen, and you were dying, would you want everything done to keep you alive?"</p><p>I was thrown for a loop for a minute. I just didn't know what to say. After thinking a bit, I started on a long, rambling speech about how of course if I were brain dead and had no hope of conscious life again, or if I were going to need life support forever....those kind of provisos. But she said (and I don't think this lady had the greatest bedside manner) "We are asking it more like a yes or no question". And so I said, before I thought about it more, "Yes! Revive me! I have a 16 year old daughter with severe autism and I have to live forever!" She answered "That sounds very reasonable", probably taken aback by my lack of basic knowledge of the inevitability of death.</p><p>And of course, in the moment, I meant it. I've thought, as we all have, about how someday my children will hopefully outlive me. But to think of it concretely, as a question like that, not that it was probably going to come up from that hospital visit, but thinking of it as something that COULD happen---wow. It's a scary, scary thought. </p><p>It was interesting how Janey reacted to my being in the hospital. I've gone away for close to a week at a time before, to visit my parents in Maine, and I plan to go again this June, but those times, I prepared Janey well in advance. I talked to her a lot about when I would be leaving and when I would come back. This time, she came home from school on a Monday and I wasn't there. She knew I was in the hospital, and I think she probably related that to when she herself was in the hospital, for something far more serious. I think she was scared, although she really couldn't express that. When I got home, she clung to me for a few days---something she almost never does. I talked to her about what happened, reassured her I felt better, told her I didn't think I'd have to go back to the hospital soon but that if I did, I'd be home again after that soon---all that. But with Janey, we never really know what she understands. </p><p>Lately, we've noticed Janey is quicker to burst into tears over things. Sometimes we have no idea what is up, but often, it's when she overhears us talking about anything even slightly upsetting. I don't know if she reads our tones or understands or words or a combination of both, but she certainly is affected by what is said around her more and more. She gets over this tears pretty quickly, and that kind of emotional up and downs is certainly something not foreign to any teenage girl, but unlike most of those girls, it's very hard for her to understand degrees of seriousness, to be reassured by reason and facts. She lives in the present. Even telling her we'll give her a car ride in a few hours or that school will be back after a vacation is more than I think she really can grasp. We explain and reassure anyway, because we really don't know exactly what she does get, but it breaks my heart to think of her scared by her lack of understanding.</p><p>Before I was admitted, while I was in the emergency room, there was a woman a few beds down. I never saw her, as there were curtains up, but I certainly heard her. She screamed almost non-stop, for four hours. At first I wasn't sure she was verbal, but then at a few points she stopped to ask for specific painkillers, and from the nurse's not quiet talk outside my curtain, I gathered she was seeking drugs. But there was more going on than that, and I heard a nurse talking to a supervisor at her group home. I don't know her story, of course, but of course, I thought of Janey. I thought of her in pain, being brought to a hospital unable to communicate. There didn't seem to be a lot of sympathy or caring for that woman, which I guess I can get---her screaming was pretty loud, and she was doing other things like making herself throw up and lashing out. But still---I drew parallels, ones that might not be there, to Janey, to those who for so many reasons are not in the mainstream of society, who can't advocate effectively for themselves, who will always be dependent on others. And that certainly added to the kick in the heart that I felt a few hours later when asked about my own mortality. I have to live forever. Janey, I wish I could.</p><p><br /></p><p><br /></p><p><br /></p>Suzannehttp://www.blogger.com/profile/08240262747073351481noreply@blogger.com1tag:blogger.com,1999:blog-5441989712918579133.post-80164290096255458992021-04-03T17:22:00.006-04:002021-04-03T17:27:20.203-04:00The Bison, The Scorpion and The MysteryJaney watches certain videos on YouTube over and over and over and over. She has become very attached to my old decommissioned iPhone, and like many teenagers, has it by her side almost all the time. Her favorite video right now is a Cocomelon one, and if you don't know what Cocomelon is, you are lucky. Their videos feature a too good to be true family, especially the youngest, a strange looking toddler called JJ. JJ goes to an extremely fancy preschool---they go skiing, get tap dance in a studio, go on a submarine and learn to surf. In the video we hear all day every day, it's the Winter Show and Tell time, told about to a tune that is sort of like The Twelve Days of Christmas, but not exactly. JJ has forgotten his project, and his mother is going to bring it later. I wish I didn't know any of that. I am tortured by the video from start to finish. But I also generally believe in letting Janey pick on her own what she watches, and I've read much from others with autism saying that watching the same thing over and over can be very comforting. So...most of the time I just try to ignore it.<div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-AACNx-Zg3xU/YGjcPx4WUDI/AAAAAAAB44k/1Dw6aREajRcz1ASSm24vOtz1_7l01Rm8gCLcBGAsYHQ/s240/JJ_in_The_Laughing_Song.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="240" data-original-width="210" height="162" src="https://1.bp.blogspot.com/-AACNx-Zg3xU/YGjcPx4WUDI/AAAAAAAB44k/1Dw6aREajRcz1ASSm24vOtz1_7l01Rm8gCLcBGAsYHQ/w142-h162/JJ_in_The_Laughing_Song.jpg" width="142" /></a></div><br /></div><div><div> One afternoon, however, I was at my wit's end. I took the iPhone and insisted on a break, and quickly, to try to keep Janey occupied, grabbed my laptop and looked for something she might like. I found for some reason an animal quiz, showing pictures of various animals to identify. The first one was a bison. I didn't think Janey would know what a bison was, and I was right. But what she called it was what really blew my mind. She looked at it for a minute and said "That's a scorpion"
The bison in question had horns that folded back on themselves. Looked at close up, the horns looked exactly like the tail of a scorpion. </div><div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-nAmK_fouw2g/YGjbNGNShwI/AAAAAAAB44A/Rl_vLc6kOS0v8pbkhDHCRxS4McRJHl4QwCLcBGAsYHQ/s500/bison-head.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="450" data-original-width="500" height="141" src="https://1.bp.blogspot.com/-nAmK_fouw2g/YGjbNGNShwI/AAAAAAAB44A/Rl_vLc6kOS0v8pbkhDHCRxS4McRJHl4QwCLcBGAsYHQ/w157-h141/bison-head.jpg" width="157" /></a></div></div><div><br /></div><div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-qR4F1PEyc8A/YGjbNBH2e2I/AAAAAAAB44E/AYDgVHM4DBgDyuN6Vpl5uHaT0VrNmTQJgCLcBGAsYHQ/s1000/scorpion-1a-xl.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="673" data-original-width="1000" height="134" src="https://1.bp.blogspot.com/-qR4F1PEyc8A/YGjbNBH2e2I/AAAAAAAB44E/AYDgVHM4DBgDyuN6Vpl5uHaT0VrNmTQJgCLcBGAsYHQ/w200-h134/scorpion-1a-xl.jpg" width="200" /></a></div> So many questions raced into my mind. How in the world did Janey know what a scorpion was? Why did she focus in on that part of the picture and make the connection? And how did she come up with the word "scorpion", when often she has a very hard time giving the correct name to the correct one of her two brothers, when her talking is so very limited, when she watches a mind-numbingly dull video hour after hour? How the heck does her mind work? What does it feel like to be her?</div><div><br /></div><div> I've wondered these things for many years, of course, but lately, it's hitting me more. A lot of it is the fear that Janey is bored out of her mind a lot of the time. It's not like we don't try to expand what she does. The house is full of books and toys, and I try very hard to engage her with them. We take her for multiple rides a day (the only other activity besides the videos she asked for much). We would jump on absolutely any interest she showed and go with it as far as we could. But she is hugely resistant to anything but the videos and car rides.</div><div><br /></div><div> It would almost be easier to think that her mind isn't full of knowledge. It truly bothers me to think of all she knows that never gets shown or used. I think about how I'd feel watching the same thing over and over, and I think I'd truly feel like I couldn't take it. I want Janey's life to be full and interesting. So what do I do?
And why does it take what almost feels like a party trick to get Janey to let us know what she knows? We've figured out when she really wants a car ride, and we aren't ready to go, she'll answer almost anything we ask, somehow hoping that it's part of the routine to get us going. We don't say that, and we would never force her to answer questions to get to do something she wanted, but still, it can be interesting. Today, in that situation, she gave her phone number, her address, her full name, and when we asked "What planet do we live on?" she confidently answered "Jupiter!" How does she know that's a planet? How is she able to easily recite a 10 digit phone number but not always her name? How can I help her use her intelligence and knowledge to have a life with more variety? What can I do? What does she WANT me to do?</div><div><br /> I'm mostly ignoring Autism Awareness or Acceptance or whatever month. I am as aware of autism as I can be, and I fully accept Janey's autism, and I can't do much about anyone else but myself. But what I really want is to UNDERSTAND Janey. What is her mind like? I wish that there were more studies of kids like Janey, not just those kids with autism that can speak for themselves. I think it's vitally important that Janey and her peers, those with severe autism, with non-verbal or low verbal autism, be understood, that we know how they think so we can help them live their best lives. It means more than anything to me to be able to give Janey the best life possible, but in so many ways, after all these years, she's still a mystery to me.</div></div>Suzannehttp://www.blogger.com/profile/08240262747073351481noreply@blogger.com2tag:blogger.com,1999:blog-5441989712918579133.post-72186518794891782482021-02-20T17:41:00.002-05:002021-02-20T17:41:28.275-05:00Cabin fever for a year<p> I woke up this morning and thought "Great---another day". That's not a positive thought, and of course right away I told myself that I shouldn't feel that way, that just being alive and in a warm house and with food and health care and a family around me should be enough. And it should, and I know that, but boy, is this endless pandemic making life with a teenager with autism tough.</p><p>Janey hasn't been happy. School is complicated and off and on, but hopefully she'll be going more regularly soon. However, this past week was vacation week. Which did make us all laugh a bit, and brought up the inevitable line "vacation from what?" In addition, it snowed off and on for days, never a blockbuster storm but enough so that to get out of the house required shoveling, and that any outdoor activities were not really possible. Janey is bored. She has had a life that's been incredibly limited for the past year. We all have, but she has far less resources to keep herself happy and entertained. She has no interest in toys, no hobbies, no ability to text friends or video chat or do crafts or cook or do just about anything that could keep a teenager happy when stuck inside the house for a year in a row. We try, of course. But even trying something as small as getting her to watch a different movie or TV show results in screaming, in arm biting, in anger. </p><p>The list of what Janey likes to do at home is very, very limited. She likes to eat, to watch a very small list of shows and movies on her iPad or on TV, she likes to have Tony take her for a car ride and she likes to snuggle on her bed. Except for the endlessly repeated viewings of Toy Story 2 and 4, the activities require our help. </p><p>Snuggling is a ritual---we have to stop whatever we are doing, go to her bed with her, watch as she puts a blanket over herself (getting her to do that on her own took months of work) and then lie down next to her. We are supposed to stay there for about 30 seconds, then she has us get up. About 5 minutes later, she gets up herself and it all gets repeated. If we refuse to snuggle, she gets hysterical, screams, bites her arm, pulls our arms, cries...and it lasts however long we refuse. If we refuse all day, it lasts all day. Needless to say, we give in after a while. It seems like a small thing, but it makes it impossible to do anything without constantly getting up and completing her ritual. </p><p>Car rides---her favorite thing on earth. Every morning, from the second she wakes up, she asks for a car ride. She mixes thing up a little by asking sometimes for "clothes on" (whether her clothes are on or not) or "shoes on" or "jacket on". We explain, as patiently as possible, why a car ride can't happen that very second. Perhaps it's because it's 2 in the morning, or because the car is covered with a foot of snow, or because we just got back from a two hour car rides and we are exhausted. No reason works, of course. If she wants a car ride, she wants a car ride. The car rides are rides to nowhere, rides around routes Tony has figured out over the years. They listen to music, which depending on Janey's mood has to either be the same songs over and over or each song quickly advanced to the next song when she says "Music, please!" In a pattern that you might notice, if we refuse, there is screaming, arm biting, hysteria---not always safe in the car.</p><p>Eating---Janey loves to eat. Luckily, Tony loves to cook, and he's wonderful with her eating. She eats a great variety of foods, mostly healthy. But her greatest love is salami. She eats salami completely without a stop button. We usually get her some good salami every day---we are trying to get only ones without a lot of additives or MSG or dyes or so on, and they are pricey. But one salami pack never makes her happy, and much of the day is spent hearing her ask for salami, us telling her we are out of salami, her going to the fridge to rummage and see if we are lying about that (we aren't), her being angry there is no more salami...you get the picture.</p><p>And TV watching. Janey used to watch more of a variety of shows, but this past year, she watches mostly Toy Story 2 or Toy Story 4. We know them both by heart. We are so tired of them we can barely take it. Occasionally we can kind of force another show---sometimes Courage the Cowardly Dog, Penguins of Madagascar, Angelina Ballerina, Kipper, Coco---but those are being seen less and less. If anyone monitors our Disney Plus viewing, they must be truly confused as to why anyone would need to watch Toy Story pretty much around the clock.</p><p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-7tPW401ml_k/YDGP2dUDauI/AAAAAAAB4ko/KJo6ju82o-kZFVPU01lSPTqbJ1RRHbLbgCLcBGAsYHQ/s960/https___blogs-images.forbes.com_simonthompson_files_2019_06_Toy_Story_4_3500-1200x694.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="555" data-original-width="960" src="https://1.bp.blogspot.com/-7tPW401ml_k/YDGP2dUDauI/AAAAAAAB4ko/KJo6ju82o-kZFVPU01lSPTqbJ1RRHbLbgCLcBGAsYHQ/s320/https___blogs-images.forbes.com_simonthompson_files_2019_06_Toy_Story_4_3500-1200x694.jpg" width="320" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">A pretty good movie, but boy, are we sick of it</td></tr></tbody></table><br />We try hard to make Janey's life more interesting. We try to dance with her, read to her, play toys with her, have her help us with things like snow shoveling or laundry or sweeping the floor. We can, with much trial, get her to do these things for maybe two or three minutes. Then she is done, and nothing on earth can make her do them longer. </p><p>In normal times, we are able to mix things up. There is school, there are car rides that actually go someplace, there is outdoors, even if she holds a device for watching her shows, there are stores we take her into, there are trips and there are visits and there is just regular life, or regular life pre-pandemic. But the year of not being able to do these regular things has resulted in Janey doubling down on the things that feel safe and familiar and comforting to her. I truly worry that it will take a very, very long time to get her back to where she was a year ago, if we ever, ever do.</p><p>The toll on Tony and me---the noble, long-suffering, perfect autism parent model I sometimes feel we are all expected to follow tells me that shouldn't matter. But the truth is---we are not doing well. We are really not doing well. We are a mixture of bored and frustrated and tired and concerned and overwhelmed. This feels endless, and at times, impossible.</p><p>Schools reopening, slowly, will be a help. The vaccine distribution, glacially slow and poorly done here in Massachusetts, will be a help if it ever gets going. People doing whatever needs to be done to get this mess under control will be a help. But I feel for the long term consequences. I fear for all the Janeys in the world. I fear that it will take many years to recover from this horrible year. I am fighting my impulse to be hopeful and positive, to say I think some good will come of all this, to soften what I am really feeling, but I won't. I will just say I hope you are all holding on, and healthy, and that you know you aren't alone.<br /></p><p><br /></p><p><br /></p><p><br /></p>Suzannehttp://www.blogger.com/profile/08240262747073351481noreply@blogger.com0tag:blogger.com,1999:blog-5441989712918579133.post-64194154774492240652021-01-24T10:57:00.003-05:002021-01-24T10:57:24.250-05:00All the tough decisions---autism life in a COVID worldAs the months go by and we are still living in this endless COVID bad dream, I suspect all of us living lives affected by autism are starting to feel the strain increase. It's not at all easy for anyone, but for kids like Janey, and families like ours and so many of yours, it's a special kind of tough.<div><br /></div><div>Starting with the new year, it seemed, Janey got more challenging. We all did. It's been a long, long haul, and it's winter, and the cases were increasing, and we all had been stuck together as a family for far longer than is mentally healthy. The biggest issue was sleep. Janey's sleep started a pattern of one night okay, one night with either a very late going to sleep time or a very early waking up time, and then one night of absolutely no sleep. And although we did our bests to catnap while she was awake, or to sleep well on the nights she did, that kind of sleep cycle...wow. We were snapping at each other, constantly tense, really not doing well. </div><div><br /></div><div>Janey, in trying to cope, I think, was developing some quite repetitive routines. One was watching Toy Story 4, and sometimes Toy Story 2, over and over and over. The other shows and movies she used to like weren't being watched at all. And not even all of the two Toy Stories were, just certain scenes, repeated time after time. And while watching them, Janey would laugh, that laugh I think you all know, an insane sounding loud almost humorless laugh, a fake kind of high decibel laugh. The nights she stayed awake all night would feature that laugh off and on for hours up on hours.</div><div><br /></div><div>We kept trying, as we have been, to do school at home. We do the morning meeting, at 8, for which Janey showed varying levels of engagement, and then video lessons such as books with a theme for the week or lessons like a great one her teachers have developed about body awareness and pain. When we can catch her in the right mood, she'll listen with interest and answer questions, but other times, she simply screams at the top of her lungs at the very mention of the classes. We resorted to making the lessons a requirement before car rides or other fun times. That's not how I want school to be for her, some kind of chore. And that's never how it has been. None of this is the fault of her teachers, who are doing a hero's job of it all in the midst of impossible challenges. It's that remote learning is not how Janey learns, and I don't think it ever will be.</div><div><br /></div><div>With all this, we decided after huge family debate to request that Janey go back to school, which supposedly was available for kids of her level of disability. We had turned down what was called the hybrid model of learning before, where she would have been able to go to school 4 days a week. I thought this was a reversible decision, and that by requesting she switch out of remote, she'd be quickly able to return to school. Well, I should have known better, as in one of the hugely contrasts that exist, the difference between the fantastic teachers in Boston and the (I won't use some of the words I'd like to use here) middle and upper level central administration of Boston, the admin people showed their colors again, and it seemed somehow either impossible or incredibly complicated to switch her model. Meanwhile, somehow there was supposed to be a switch for most special needs kids to in person on February 1st, but in one of the many conflicting and complicated emails I got, we were told since Janey was in the highest needs level and we had before requested remote learning for her, now that those with less severe needs were going to be able to go back, our previous decision to be remote had to stand, unless we did some complicated other form and (presumably) prayed it worked. If you are confused, so am I.</div><div><br /></div><div>However, Janey's teacher and I had the idea that perhaps Janey could go to school for one day, or one day a week, for state testing she had to have. Even just one day was such a thrill for all of us to think of. So a week ago Thursday, Janey went to school for a day. She had a wonderful day. We had a wonderful day at home. The effects of that one day, even, last for days and days---better sleep, better toilet use, better moods, and Tony and I, after 10 full months of absolutely zero respite, had about 4 hours to ourselves between driving her in and picking her up.</div><div><br /></div><div>Part of the day at school was a COVID test. Janey wasn't excited about the prospect, and resisted at first, but her teacher told her that after the nurse "tickled her nose", she could have a lot of salami. Brilliant! She gave Janey a minute, asked her if she was ready, Janey said yes, and the test was taken successfully.</div><div><br /></div><div>That first week's test was negative. We took Janey to school again last Thursday, so happily. I especially needed a break. Midweek I had developed diverticulitis for the third time in three years, with a fever and lots of pain, and a remote appointment and antibiotics and warnings of what signs to go to the ER immediately if I got. Janey was tested again that day.</div><div><br /></div><div>Saturday morning Janey's teacher called us to say that the pooled test, where Janey and one other child's COVID tests were combined together and tested, were positive. Either Janey had COVID, or the other child did, or both of them did. The school nurse called me a few minutes later (her teacher called me first to tell me in person, which I so much appreciated) She went over the next steps, which was to get Janey her own COVID test. </div><div><br /></div><div>We are getting Janey's test today. And I'll just note here, when mayors and governors and so on urge testing, well, could they make it a little damn easier to get a test, even in a situation like this where there is more than just an exposure, where there is a 50% chance Janey has the virus? Can they make it so you don't have to call around for hours and EXPLAIN to the nurse you finally talk to what pooled testing even is, and hear her say "I've never heard of that! That's stupid! I don't understand why they would do that!" and then act like saying Janey could get a test is some kind of huge favor, and then asking me "Will she even cooperate with the test?" </div><div><br /></div><div>Janey has a few mild symptoms which might or might not be significant. A few nights ago she was coughing a bit, and she had some diarrhea, which is rare for her. But yesterday and today she seems perfectly healthy and happy. And thankfully, the rest of us don't show any signs so far. But still, of course, we have to quarantine, and in fact, the whole high school is going to have to go fully remote (although only about 20 kids weren't remote) So, for now, our plans of having Janey go to school in person again are at the very least on hold for a while.</div><div><br /></div><div>I don't have a strong conclusion here. Were we wrong to send Janey in for those two days? My older son strongly, strongly feels we were, and maybe he's right. But as I told him, he hadn't been up night after night with Janey. He wasn't the one responsible for keeping her together day after week after month, or for trying to get her to access an education in a way she didn't want to and couldn't seem to, she wasn't the one without one second of respite from a very high needs child for literally almost a year. We want Janey to learn, to be with friends, to have fun, to get the benefits of the wonderful teachers and aides and therapists that are there for her. But of course we also want to be well. And you can't really be mad at a virus. It's doing what all of us are doing---trying to stay alive and go on. </div><div><br /></div><div>I'll try to keep this blog updated on Janey's test results. I hope you all are hanging in there. Please know you aren't alone during these long months. There's a lot of us out there living this life. Whatever decisions you make about schooling, know that you are doing the best you can in your situation. And join me in hoping that a year from now, this will be part of history. Please.</div>Suzannehttp://www.blogger.com/profile/08240262747073351481noreply@blogger.com2tag:blogger.com,1999:blog-5441989712918579133.post-16781176823048425832020-12-19T10:29:00.001-05:002020-12-19T10:31:04.683-05:00"Listen to my mouth!"Janey overall was having a fantastic day yesterday. She was cheerful and upbeat and fun, loving listening to Christmas music with me and having a car ride with Daddy after a day too snowy for a ride the day before. We were enjoying her company so much. Then, as happens, something changed. She started crying, screaming, freaking out over everything. We had no idea what was going on. I snuggled with her on her bed and tried talking about it, asking the same old questions I'm sure she's sick of---"What's wrong? Why are you sad? Does something hurt? How can I help?" She didn't answer. William came in the room and I asked again what was wrong, and somehow the combination of him being there and my asking seemed to bother her a lot, and she hit me hard. I stayed calm, told her that I didn't like being hit, told her I wasn't going to stay snuggling with someone who was hitting me, got up and walked away. She screamed and screamed and screamed.<div><br /></div><div> After a little while, when I'd gotten her to say she was sorry (with much prompting, and who knows why I ever bother, because I don't think she means it, but I need to have her say it), I went back to snuggling her. She then looked at me intently, stared in my eyes with a look that was unusual for her, and said, twice in a row "Listen to my mouth!"
I don't know what it meant. I really don't. I don't think it meant to listen to what she was saying. Maybe it did. But she usually doesn't use language like that, in a slightly indirect way. And she wasn't saying anything about why she was upset. But it meant something. She took the effort to say it, and you could see it was an effort. I stayed up a long time in the night, trying to figure it out. It finally came to me that it might be related to what doctors say "I'm going to listen to your lungs now. I'm going to listen to your heart" I don't think she could pull up the words "lung" or "heart", and she might have been saying something in her mouth hurt and she wanted e to see that, or that she just felt sick and wanted help from a doctor. But she doesn't seem sick, doesn't have a fever, doesn't have low oxygen. In this COVID times, taking her to the doctor when she doens't seem sick is not really a good balance of safety and health. </div><div><br /></div><div> The whole thing brought out so many issues. Why does she get upset out of the blue? Why is it so hard for her to tell us what is wrong? Why does she hit once in a while? What do mysterious phrases she says to us mean?</div><div><br /></div><div> The hitting seems like her way to say she's really, really seriously not liking something. She doesn't do it often at all now, and when she does, it doesn't have the feel of something spontaneous. It feels like a planned thing, at least planned a few seconds in advance. The last time she really hit me was when we were trying hard to do Zoom classes, and I told her it was time for one. I think last night she was telling me she really didn't like my endless questions. Of course, hitting is not at all the way I want her to communicate, and I need her to know that, but I also need to listen to what issues are upsetting enough for her that she feels she has to hit. </div><div><br /></div><div> The "listen to my mouth"---phrases like that are about as frequent as hitting, not very frequent at all. You can tell she thinks about them before saying them. The way she looked at me was very striking. I could tell she really wanted me to pay attention. And it makes me feel awful that I wasn't able to quite get her message.</div><div><br /></div><div> It's frustrating so often, figuring out Janey's needs. I don't want her to be unhappy, but of course, like all of us, sometimes she's going to be unhappy. But it's so hard not knowing why she's unhappy. Was she just sick of being around me? Did she think about something upsetting? Did something hurt? Was it just too long a day, and she was tired? It's hard dealing with this, but of course I'm sure it's a million times harder for Janey, being so upset but so unable to explain why, doing her best to let me know in the way she can but not having me get it. Janey, I will try to listen to your mouth, and your heart, and your mind, and all of us. I am trying hard.</div>Suzannehttp://www.blogger.com/profile/08240262747073351481noreply@blogger.com1tag:blogger.com,1999:blog-5441989712918579133.post-58040130418133125042020-12-08T14:08:00.002-05:002020-12-08T14:11:35.105-05:00Finding words when you need them<p> I missed a day of my aimed for week of new blog posts, but that's life in our household! The best laid plans of mice and men...</p><p>I think constantly about Janey's speech and its oddities. I was thinking for a long time that the main issue she has is with word retrieval. The words are up there, in her head, but she just can't find them when she needs them. Lately I've refined that in my mind. She can retrieve them under certain circumstances, but not in conversations, or in casual remarks or questions.<br /><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left;"><tbody><tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-NGPMe1DlPVI/X8_OxxKhVGI/AAAAAAAB4DA/-ByfBgE-Vvo4pJffZ_zAx_ewWFbF35uygCLcBGAsYHQ/s833/IMG_6416.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="833" data-original-width="625" height="320" src="https://1.bp.blogspot.com/-NGPMe1DlPVI/X8_OxxKhVGI/AAAAAAAB4DA/-ByfBgE-Vvo4pJffZ_zAx_ewWFbF35uygCLcBGAsYHQ/s320/IMG_6416.JPG" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Janey in a top featuring one of her favorite Christmas songs.</td></tr></tbody></table></p><p>For example, as I've written about before, Janey can show a remarkable vocabulary under very specific conditions. The best way to have her show it is, when she's in a good mood, to show her flash cards or point to pictures in a book. If we do this rapidly, without saying anything but "What's this?", she can name pretty much anything you could imagine. She'll name things we have no clue she'd know, like "iguana" or "moat" or "treasure chest" I think this might be a bit like Rapid Prompting. The key seems to be that you aren't asking ABOUT the words, and you aren't putting any other demands on her at the same time as asking her to name the words---not any social demands or extraneous comments or anything. </p><p>Sometimes it also works to ask her a series of questions, as long as they aren't about what she wants to do or how she feels, but more just information questions. For example, one night she wanted to go for a car ride, and I told her we couldn't because Tony was busy. I said "What is Daddy watching?" and she answered quickly "The Patriots!" and I said "What do the Patriots play?" and quick as a flash she said "Football!" I was very surprised at both answers. I had no idea she knew the name of the team or what they played. But it was up there in her brain.</p><p>Another clue to how Janey's speech is organized in her brain is the kind of mistakes she makes. One morning, I was helping her put on some Santa socks. I asked her who the socks showed. She answered, after a little pause, "Christmas!" I think there's categories she stores, and when she can't get the right word out the category, she gives the category name. This might be a part of her most common response, when she wants help putting on a TV show, and we ask her "What show do you want?" and she says "This one!" We are asking her for the specific show, and she is answering with a category, the category of all TV shows, because coming up with the name of the certain show is not something she can do right then.</p><p>Janey doesn't talk conversationally, without extreme prompting, not ever. Her speech just doesn't seem to work that way. She never says to us "How are you?" or "What are you doing?" or "Where are we going?" She never responds spontaneously to questions like "How are you?" She might say "I am fine!" if that's something she's been taught, but she'll never, ever just answer with a casual, on the spot answer. That is why I think she just doesn't have access to her vocabulary in that context. The words might as well not be stored at all, for how much she can use them in conversation.</p><p>I wish there was more written about how what's sometimes called "low-verbal" kids with autism talk. It's pretty fascinating to me. I've read a lot of science for laymen type books about how people learn to talk in general, such as "The Language Instinct" by Stephen Pinker, and I think a study of someone with a language disorder such as Janey has could help understand how words are stored in the brain. </p><p>One very interesting fact I've read a lot about is how sometimes people lose the ability to talk but keep the ability to sing. Janey's access to songs in her head is far better than her access to words. She will often start singing spontaneously, in a way she never does with talking, and this doesn't seem scripted. It just seems like a desire to sing a song, which we all have sometimes.</p><p>I would love to know how to better help Janey use the words she knows. Janey's had lots of speech therapy, but I don't think it's ever addressed her specific issues with retrieving words for conversational speech, and maybe there is no way to teach that. It's tough, because you can try to help her answer things, but in doing so, you almost always have to give an example, and that example becomes a script, and usually gets turned around in terms of pronouns. You can say "How are you feeling?" and wait for answer, but when you don't get one, how do you show her how to answer? If you say "I feel fine!", she doesn't seem to pick up on that as an example of how she can talk. So we'll say "Can you say 'I feel fine'"? And she'll say the whole thing back "Can you say I feel fine?" Or if we ask "Do you want to go for a car ride?", she comes to see that as a way to ask for a car ride, and we get the whole phrase "Do you want to go for a car ride?" to ask for a car ride.</p><p>Many days pass with Janey only saying three or four different things. Her mainstays are "I need help!", "Want to go for a car ride?", "Want salami?" (sometimes substituting other foods there) and "Cuddle on Mama's bed?" (which means she wants us to cuddle on her bed---at some point wanting Mama to cuddle her got mixed in with the bed part and turned it into that combination) That, along with "yes" and "no" and the always versatile scream are the core of her talking.</p><p>I'd love to hear from other parents of minimally verbal girls, and from those who communicate non-verbally as well as those who talk more freely. Communication in autism is fascinating (and frustrating)<br /></p><p><br /></p><p><br /></p><p><br /></p>Suzannehttp://www.blogger.com/profile/08240262747073351481noreply@blogger.com2