Saturday, December 19, 2020
Tuesday, December 8, 2020
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...
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.
|Janey in a top featuring one of her favorite Christmas songs.|
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.
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.
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.
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.
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.
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.
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.
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.
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)
Sunday, December 6, 2020
Saturday, December 5, 2020
Friday, December 4, 2020
Starting about a month ago, I began taking Janey down to the cellar with me while I do laundry. This was partly out of the desperation of looking for activities within the house we could do. To keep Janey interested, I told her she was going to do the laundry all by herself.
Of course, I didn't really expect her to do the laundry, but that first time, I led her through the steps. And as so often happens, she surprised the heck out of me. First I told her we needed to clean the lint screen in the dryer. She immediately pulled it out, cleared the lint, threw it away and put the screen back. I think she had maybe seen me do that once, years before. Then we took out the dry clothes, and she tossed them in the basket. I put the wet clothes on the dryer door, and she pushed them all in. Then I told her to close the door, which she did. The door to the dryer always needs an extra push to stay closed, and she, without me telling her to, gave it that extra push. Just to see what happened, I told her to turn the timer and turn on the dryer. I had to help a little with the timer, although she knew right where it was and the direction to turn it. I had to help not at all with turning the dryer on, even though that involves pushing on another dial that doesn't look like a button.
Then the wash---she tossed in the clothes I gave her. I poured the detergent in the cap, and she confidently pulled out the detergent holder. I gave her the cap and she poured the detergent in without spilling, and shut the lid. I wasn't even that surprised when I told her to start the washer, which involves pushing two different buttons in the order. Absolutely right, first try.
The whole laundry routine, along with other areas where I've lately been observing Janey's level of competence, has made me think a lot about something. I was reading something a few weeks ago which mentioned a family with a child with intellectual disabilities. Instinctively, I thought to myself "Wow. That must be tough" And then I realized what I thought. Because, of course, our family falls into the same category as that family. Or I would have said so, for many years.
I realized after that reading and thought that I no longer think of Janey as intellectually disabled. I'm not living in a dream world. I know that she would and has scored extremely low on IQ tests, that by any academic standard you threw at her, she is in the severely intellectually disabled category. But that's not how I think of her. I think of her as...well, Janey. I think of her as a person with strengths and weakness. I think of her, often, as a bit of a mystery. I can't say what's in her head, but the little hints she gives us make me think there's much going on there, much we are not privy to.
I'm not saying this to tell anyone else what they should think, about Janey or more, about their own children. It took me 16 years to get to this way of thinking. I would hear about and agree with the idea of assuming competence, but I didn't truly mentally buy into it. I don't know if I still would word what I feel just that way. I would say more...we don't know. We don't know what Janey knows, what she thinks, what she's capable. But actually, when I think about it, that results in kind of the same thing. We don't know what she can do, so we need to give her a chance to show us. We need to keep in mind she's always watching us and listening to us. She must have observed the heck out of me doing laundry, at the very least, and I'm quite sure there are hundreds of other routines and ideas and conversations she's much more aware of that is visible at first glance.
I've got some more thoughts on this subject, and on other surprise ways Janey has shown us what she knows. I'm still planning on a blog entry da day for this week, so stay tuned for more tomorrow!
Thursday, December 3, 2020
Zoom meetings. Remote learning. Those terms, in the future, when hopefully this COVID year is a memory and school once again means actually going to school, are going to send a shiver through me.
Remote learning just doesn't work well for Janey. To be fair, sometimes in person learning doesn't work well either, but that's if we look at things from a strictly academic perspective. In person learning has almost always worked in terms of helping Janey---making her happier, teaching her social skills, giving her life a purpose, keeping her active, and giving her time with some of the finest people I've ever known, her teachers and paras and therapists. Remote learning can't replace school for her. It probably can't for anyone, but for Janey, it's been a bit of a nightmare
What's hard about it for her? The biggest challenge is just getting her to sit down and listen and engage with the computer. I say "the computer" and not "her teachers" because I truly don't think she understands the people she sees on the screen are her teachers. I think she sees it as some kind of video that talks back to her and makes demands on her that regular videos don't. Unlike how she watches TV, it also requires her to stay in one place, to listen in order, to answer things. When she watches a video, she moves around constantly, rewinds often, changes shows, turns things off and on. No-one asks her questions. It's her time. Now, she's suddenly, in her eyes, being asked to watch videos that oddly feature people she knows in real life, and to watch them without constantly getting up, and without being able to stop and start and switch around. It's not her cup of tea, to say the least.
At school, everyone learns pretty quickly there's some days that Janey is ready to engage and some days she isn't, and some times during each day she's more alert and other times you can't get a word out of her. But remote learning is only at certain set times each day, and they often aren't her chosen times. Her poor sleep lately means that sometimes it's time to do school when she's sleepy, or hyped up from not sleeping, or just not in the mood. She's been doing fairly well each morning at 8 with the morning check-in, but that's only about 10 minutes. Even that requires us to remind her over and over and over to stay at the screen.
There is also so much that can't be captured on a screen. There's so many times Janey has answered a question when she's muted, or pointed to something on a screen when it's not a touch screen, or gave a response to something that was asked minutes ago. In a classroom, that would be noticed, but when a teacher is trying to teach 5 or 6 kids like Janey at once, or even in one on one sessions when Janey is not positioned right in front of the screen or loud enough or clear enough, so much is missed.
A classroom is full of activity, things to look at, things to engage with. A screen isn't. The teachers have done their level best, but nobody was trained for this. It's not something we ever anticipated.
So...what do we do? I am not sure. I know I've pretty much given up on remote learning. Janey goes to the morning meeting, has music therapy once a week and once in a while watches recorded lessons, but I am not pushing a lot more. When I did, it wasn't pretty. Janey reverted to scarily tough behaviors. We got the message.
I want Janey back in the classroom, IF that is safe. It's looking more like it might be, from my reading. I don't think COVID is spread much at schools. COVID is hugely scary, something I would like our family to avoid getting at almost any cost, and I fully understand why schools closed. And if science shows they need to stay closed---well, so be it. Nothing is more important than staying alive, of course. But I am now at the point that if school opens, and those with more knowledge than myself determine it's safe, even if no-one can say it's 100% safe, I'll send her. Nothing is 100% safe, ever.
I wonder how other families are handling this, how remote learning works for your kids, what your schools are offering. I'd love to hear from people around the US and around the world about your experiences.
Wednesday, December 2, 2020
I've been neglecting this blog lately. Most of that is the whole pandemic related every day feeling the same bit. It feels like nothing changes, like we are all just in a big holding pattern. But thinking about it yesterday, I realized actually lots has been happening. Being with Janey 24/7, we are every day learning more things about her and figuring out more ways to engage her, and understanding more how her mind works. I've had a lot of thoughts I'd like to share, but I kept feeling like I had to wait to write until I tied them all together and had some perfectly worded way to sum them up. When thinking about this last night, I realized I just need to write, to get back in the habit. So bear with me as I start my week of blogs---a little each day!
I'll start with---how are we doing? Okay. We're doing, well, okay. Like everyone else, we are tired of this whole bit, but hopeful that maybe a light at the end of the tunnel is starting to be visible. Janey hasn't been in school in person since March, not a day. At one point she was offered a hybrid model, which would have resulted in the end in her having about 4 days total in school before it shut down again. I sensed that the renewed shutdown was coming, and I just didn't think it was worth the risk to send her. I'm glad I didn't. Now only a very, very few kids in Boston are going to school, and Janey is not one of them.
Remote learning---well, that' s not easy with Janey. Her teachers and therapists have been trying hard. Janey now pretty much tolerates the morning meeting, which lasts about 10 minutes, starting at 8 o'clock. She will sometimes watch recorded lessons, with varying amounts of interest. I can get her now and then to do a little bit of work on paper, circling things or listening to short stories. But it all adds up to vastly, vastly less school than actual school, probably about 1/100th as much. And no real social contact, no special things like swimming or dance, no time away from her family. When I think about her being 16, and how limited her life is----well, it's not great.
And from the perspective of Tony and me---that's tough too. We have absolutely no time at all without fully caring for Janey. School always gave us a bit of time to breath, to nap if necessary, to regroup. Caring for Janey is a lot like caring for a toddler in an adult's body, day and night and day and night. We are tired. Janey's sleep hasn't been great, to say the least. About once a week, she doesn't sleep at all, and maybe two more nights of the week, she sleeps very little. We can kind of catnap while she's awake, but not fully sleep (and I must give a shoutout to Tony, who does the vast majority of the night caring) and Janey wakes us up often to get help with videos, ask for food, ask for car rides, all that. We are hugely worn out.
But it all could be a lot worse. None of us have gotten sick, thank goodness. Janey will wear a mask to go to the grocery store, the one place we go, and Tony takes her there almost every day. Except for when we were trying hard to recreate school at home, which caused a huge pushback from Janey and some very tough behaviors, she has been mostly cheerful, and often a very lot of fun to be with. We are getting by.
I'll write a lot more in the week, about Janey's speech, about remote learning, about things I've discovered about how she learns, about music and car rides and siblings and so. For now, I'm just sending out love to all of you, and hoping you are coping. Let me know, so we can all support each other!
Monday, October 19, 2020
We are hanging in there! I keep thinking back to March, when the schools closed and they announced they were closing for a month, and I thought "A MONTH? Isn't that a bit extreme?" And here we are, in October.
The Boston schools did open part time for kids with more severe special needs, and Janey was eligible for in-person schooling a few days a week, but we opted against it. Tony and I really need to not get sick, and it just didn't seem to make sense to send Janey off on a bus to a school when the daily routine would not be as she liked or expected, as hard as her teachers would have tried for her. So we are doing modified homeschooling, using work delivered by her teacher each week. We aren't pushing her much, to say the least. When we started up last month, we tried, and she immediately pushed back, strongly. We saw some very tough behaviors, things we haven't seen for ages. When we stopped demanding as much from her, the behaviors eased and at this point, are gone. She spoke loudly in the way she is able.
It's hard seeing the divisions and anger and infighting in the Boston schools. There are those who very much want more in-person schooling, and those who want no in-person schooling. I can see both sides. I feel sometimes like I sound like a wimp saying that, like I can't take a stand. But the truth is, in this issue, like so many, there is no one right answer. As I've said before, if we were in the middle of the toughest times with Janey, I would have sent her to school even with the risks involved, because we would have absolutely, completely needed that respite and support. If I had a young child, just diagnosed, and I believed that every second was vital in her development, that I was missing out on some closing window to help her, I would insist on in person school. So I understand anyone that feels that way. I also know many school districts have safer buildings, less bus rides. I have dear friends who are sending their children to school safely.
In Boston, though, I feel very much for the teachers who are angry in person school is still happening. The union made an agreement that if the positive test rate for COVID went over 4%, there would not be in person school, but somehow, once it did, that wasn't honored, due to some loophole. So many of the school buildings in Boston are old and absolutely not well ventilated. Teachers are being asked to teach under conditions that aren't safe, due to what seems like an unwillingness to only use the buildings that are actually safe. I feel for my teacher friends and family, very very much.
All that aside, we are at times kind of enjoying this break from the routine. Once we listened to Janey about what she could handle and not handle at home, she's a joy. She's been so much fun to be with. She is in one of her more active talking periods---mostly echolalia, delayed or not, and scripting, but as I am glad more people are realizing, that's not random. It's a way of communicating, a kind of cut-and-paste way of talking. Yesterday, for example, as Tony watched a little football, Janey came in the room and shouted "That's a touchdown!" I'm sure she's heard that on the TV, either just then or another time, but she hears a lot of things on TV and doesn't say them. She knows, to our surprise, that a touchdown is the vital thing with football, and it was so very cool to have her join in and speak up!
|On the beach in Truro, Cape Cod|
We've even travelled a bit, in a socially distanced way. I've been doing a project for a while of taking pictures of all the town halls in Massachusetts, and we've done two overnight trips to parts of the state to collect pictures---one to Western Massachusetts and one to Cape Cod. We've felt safe in very clean hotel rooms, wore masks and didn't go into any stores or restaurants, and we've had a great time. Janey travels well. She doesn't care for idle sightseeing or shopping or anything, so this type of travel works for her, although I certainly must admit I'd like to wander around quaint downtowns or relax at a beach a bit more than she likes. It's sometimes frustrating, but it's still fun. Not having the tied down school schedule is great for minor travel.
In the car, Janey loves listening to music, but for a while, she was driving us crazy by saying "music please, music!" all the time, which means "I don't like this song, go to the next one!" She would say it for every song for hours. We have tried to give her control of the music by letting her hold a phone Bluetoothed to the speakers, but she doesn't like to do that. Instead, she wants us to be her music changer, and I think often she has some specific song in mind, and just hopes to hit on it by us constantly changing music. Needless to say, we couldn't take that forever. So we actually stood our ground. We told her that some car rides were her turn. On those, she got to pick the music, and we'd change songs whenever she wanted. But other car rides were Tony's or mine, and on those, we'd listen to what we wanted. If on those rides, she said "Music please, Music!", we'd simply turn off the music, and say "We'll take a break" We wouldn't force her to listen to music she hated, but we wouldn't constantly change the music either. Surprisingly, this worked. She has been listening to our music and not objecting (much!) and enjoying her music.
|Janey in her Coco top|
Life with Janey is interesting. We are learning, gradually, how to listen to her no matter how she communicates, and learning also when to stand our ground and when to give in. It's like that with all children, I know, but with Janey, it's easy to fall into the extremes---being in total charge of her for what might be seen as her own good, or giving in on everything. These recent easier years are partly just her growing up, and partly us learning what works, and how to trust our own instincts as to what works.
I hope you all are well, and I hope we all can stay in touch via Facebook during this crazy time.
Wednesday, September 9, 2020
Over the years, I've been a big cheerleader for the Boston Public Schools. I am a fan of public schools in general, and I've always tried to let people know it's very possible to get a very good education in Boston without feeling like you have to send your child to private school or you have to move out of the city. For those of you not in Boston or near it, the Boston schools don't have the greatest reputation. I've felt for many years that poor reputation is not justified. My three children, all very different from each other, have been for the most part well served in Boston.
My feelings haven't changed when it comes to the teachers, or the therapists, or the paraprofessionals, or the principals. I can truly say in all my years, which add up to 23 years now, of having my children educated in Boston, I've only encountered two or three teachers, out of literally hundreds, that I would not happily have teach my child again. Indeed, I've had far more than my fair share of absolutely amazing teachers, of therapists that care deeply, of paraprofessionals that I would trust with my children's lives without a second thought, of principals that took a personal interest in my kids.
But the school system in general? The upper management, the central office, the bureaucracy? Well, I'm not too happy with them.
Nobody can be blamed for COVID-19 existing. It's a virus. You can't be angry at a virus. But I am angry at how the whole crisis has been handled in Boston, quite angry really.
I've talked through Facebook and by phone to many, many other parents in other parts of the US and world, and overall, it seems like most school districts are finding a way to educate kids like Janey. At the very least, most districts seem to have used the summer to make plans, to find a way to bring the kids that just don't learn well at home into the schools as safely as possible. Some parents have chosen to keep their kids home anyway, and that is certainly understandable.
Technically, we were given a choice with Janey---remote learning or a hybrid method, 2 days a week at school. But after talking to her teacher and hearing what those two days a week would be like...wow. They would be in one room, with masks on, never leaving the room, teachers not allowed to touch the kids at all, much of the teaching taking place by Zoom meeting even in the room, as teachers would not be circulating. That isn't a classroom model that would work in any way for Janey, or for most kids with autism. So we chose home education. Janey's amazing teacher understood that Zoom meetings don't work for her, and she is going to provide us with weekly materials (which she had to do a funding drive to get money for---no thanks to Boston there) to teach Janey with.
Janey's room at school has no opening windows, none at all. She rides a bus for an hour each way to school and back. She will wear a mask for short times, but I'm quite sure she wouldn't leave one on all day. She lives for walking around the school, for field trips and swimming and dance. It would be both unsafe and deeply unsatisfying for Janey to go to school as it has been set up.
I attended a big Zoom meeting for Boston parents of special needs kids. I won't go into it in detail, but it was awful. A politician was allowed to grandstand for a long time, an ABA specialist took up a long period of time during a meeting meant for PARENTS to ask questions (she had good ideas, but at least 50 parents had questions that there was no time to answer during the too short meeting), and most disturbing to me, a school official outright lied. He was asked (several times) if teachers were going to be given adequate PPE (personal protective equipment, like masks, shields, etc.) He said emphatically "Yes! Absolutely!" Well, as of last week, I have been told that such equipment is not only not being given to teachers, it hasn't even been ordered.
Even if we had chosen to send Janey to school, school isn't starting in person until October 1st, or at all, even remotely, for another two weeks. I don't see any other district anyway that isn't even having any school this September, basically. The schools had all summer to prepare. This didn't all come out of no-where. But from what I can see, infighting and attempting to please every politically powerful faction took up the time that should have been spent on one big goal---finding a way to safely educate the kids of Boston.
I know that the powers that be would argue they just can't find a way to safely educate Janey and her peers. But I wonder---why, elsewhere around the country and around the world, are so many other kids like her back in classrooms already, safely, with teachers that have the equipment they need to be safe, with classrooms that are ventilated, with few enough kids in a room for it to be safe, without a mask requirement for children whose special needs just make it impossible for them to understand why they need to keep a mask on?
Boston school buildings are underutilized. Janey's high school has a population far, far smaller than the school was built to hold. All the time, attempts are made to close some of Boston's 125 school buildings. Surely, somewhere in the city, there are enough classrooms for kids like Janey, the highest need students, to safely attend school, and surely, there are enough teachers that, if given the proper tools, would feel safe teaching the classes. I don't want any teacher that doesn't feel safe or supported to teach. Many teachers have small children, or medical conditions, or the like. But if only teachers who felt safe teaching were to teach the high needs kids, as is happening what seems like virtually everywhere else, and if Boston could be flexible and open classrooms in buildings that have good air circulation and opening windows, even if that required Janey and others to temporarily go to a different school---well, you would really think a city like Boston could do that. And you think they would be shamed by seeing that everyplace else pretty much in the world is finding a way to do what they can't seem to do.
We're fine, ourselves personally. Janey is 16. Although it's not what we want, truthfully she could stop going to school now and it wouldn't be a tragedy. I was prepared to have her drop out if the schools had been rigid about Zoom meetings for her schooling. But there are so many young kids with autism in Boston who desperately need schools. And although we are managing, Janey is regressing in a lot of ways. Her toilet training has been, well, set far, far back. She is talking less much of the time, and lately, especially after seeing her teachers outside in a socially distanced meeting---which was great---she seems to be upset she's not in school. She can't express that directly, but it's fall. She knows fall, and she knows that is when you go to school.
One of the things that was said at that infuriating Zoom meeting for parents, when a parent poured out her heart about how hard this all has been, and how she didn't feel equipped to teach her young child with autism, was that there are many social service agencies in Boston designed to help the special needs community, and "we are going to work with them to get services and help for kids who need it" (not the exact words, but along those lines) I think of all of this, that makes me almost the angriest. You are GOING to? Why hasn't that been happening right along? Why are there untold numbers of agencies that I know have a mission and funding to help kids like Janey, and that are I am sure are well-meaning, but that don't work with the schools, or each other, that don't ask parents what we really need, that hold endless workshops and support groups and make up nice fliers but don't provide ANY respite, ANY after school programs, ANY direct help, except maybe to a small number of people that know exactly the right way to ask for it and have the means and personality and connections to access the help? Why can't help be OFFERED to those who truly need it?
I'm angry. I'm angry that the overpaid, overstaffed, underworked bureaucracy of the Boston Public Schools is failing the children of Boston, and the teachers of Boston, and the everyday citizens of Boston. I don't get angry easily, Boston. It took me 23 years to get this angry. But I'm angry.
Monday, August 10, 2020
That being said, lately I've been thinking a version of the "How do you do it?" myself. It's in the form of "How WOULD we have done it?" How would we have handled this pandemic, this lack of school, this isolation, during what I always think of as the Tough Years---approximately from when Janey was 5 until 10? Those years...wow. Those were the years in which an inclusion school which aimed to include all special needs students realized they were not up to including Janey, and then, while in the autism program she moved to, she was so unhappy and angry that the day came that I got the call that she wasn't even safe to go home, that we needed to come to the school to go with her by ambulance to the emergency room, the start of an ordeal which include six horrible days at Children's Hospital and 3 weeks of Janey being in a psychiatric hospital. Those years featured many, many days where Janey screamed all day, literally, days when she bit herself hard, days when she cried heartbreaking tears for hours, nights of her fury and sadness that seemed like they would never end. But during those years, there was school. We had about six hours a day when we could sleep (or often, just I could---Tony was working, most of that time at a job an hour from home, and how he ever lived through those years I'll never know), recover, breathe, know that she was cared for.
But what if the pandemic had been during those years, and there was no school? I think about that all the time, and I truly wonder how we could have done it.
Of course, the thing is, lots of other people with children with severe autism are living through those tough years right now. And I think about them, all the time. I think about how it must feel to have a child so desperately unhappy, and to be trying so very hard to help them, and having absolutely no respite---no school, no activities, no nothing. I think of them trying to think of ways to fill the days, and to get some rest. I think of the siblings, trying to learn at home in a household that might be often filled with screaming or hitting or crying.
If COVID-19 had happened during the Tough Years, I have to say honestly that I would have sent Janey back to school the second school was open, even if I wasn't sure it was safe, even if I had huge fears about the virus. I would have sent her because I would have known that we simply had to---in order to stay sane---not just us as parents, but her too. I would have taken the risk, the possibility of sickness weighed against the absolute knowledge of what more time at home would be like.
This knowledge is why I am not sure how I feel about schools staying closed. If we lived in an ideal world, I would feel sure they should stay closed, but we don't live in that world, and I know there are families out there right now just barely hanging on. I think about the teachers, with families of their own often, and I know they will be put at risk going back to in-person school, as well as the aides and lunch workers and bus drivers and therapists. I worry about all of them. But I can picture most, of course, the situation we have lived through, the child who needs help so badly and the family so extremely stressed by that child's needs, and I worry so much about how they are managing to go on. I know some of you reading this might be living that life right now, and feeling like you are very alone. I wish I could help more. I wish I could come to your house and take care of your child for a day or two, so you could sleep and recover. I wish I had magic.I wish I could fast-forward your life to calmer years. But right now all I can do is tell you I am thinking of you.
We are so lucky. Janey, at almost 16, is happy most of the time. Aside from a period of adjustment at first, and from the days she got upset by Zoom meeting school, which we will no longer do, she has been a champ during this time at home. We are enjoying her. Most of that is just her maturing. Some of it is changes we made, changes in our expectations of her and also changes in our lives. Tony retired early, which has been a financial challenge but without a question absolutely a right decision. The boys are older. We are okay. We hope that Janey can safely go back to school at some point, because she loved high school, but for now, we are okay.
I hope all those in the places of decision making do give a thought to those who are in the Tough Years of severe autism. I hope we can find a way to help those families get through this. I won't say to them that I don't know how they do it. I know how they do it. They do it day by day, hour by hour, minute by minute. They do it because they love their kids, their amazing kids. But they need help, and we as a society need to figure out how to help them, especially in these extraordinary times.
Tuesday, August 4, 2020
Thursday, July 9, 2020
We chose not to "send" Janey to summer school. I put send in quotations as summer school was going to be totally virtual, all Zoom meetings, for THREE hours a day. It was a no-brainer to turn it down. Zoom meetings quite simply don't work for Janey. We tried our best during the school year, for the hour a day her class met. At the best, she would sit still and watch the screen, and perhaps participate with a word or two during that hour. At the worse, she would scream, cry, turn off the computer, close the screen, run away constantly and then be in a terrible mood for the rest of the day. Either way, it wasn't in any way worth it.
I don't think Janey understood at all that her teachers and fellow students were at the other end of the meetings. I think she saw it as a TV show or movie,one that for some reason we forced her to watch, one that sometimes strangely called out her name specifically and tried to get her to respond. This wasn't the case with all the kids in her class. Some of them participated eagerly, and almost all the other kids at least were more engaged than Janey. That surprised me. But as we all know, every kid with autism is different. I did think there were more kids similar to Janey at her high school, but perhaps those kids just weren't participating at all.
One thing that struck me is that Janey has much less liking of repetition than the other kids like her seemed to. Or at least she has less liking of repetition she hasn't herself chosen. She will watch the same movie day after day after day (Toy Story 1-4 and Coco and The Emperor's New Groove, I'm talking to you!) but that's her choice, and she does move on with movies or music after a while. She'll eventually get bored and cycle in something new. But the Zoom meetings featured the same songs and videos day after day---greeting songs, days of the week or months of the year or seasons videos---and Janey was not interested. This got complicated by technical problems when the audio or video wouldn't work well. I felt for her teachers very much. They had not signed up to be virtual teachers or educational technologists. They are hands on, great teachers, and they were being forced by circumstances to teach in a totally different way. And it just didn't work for Janey.
|A typical scene this summer, watching videos outdoors|
How are we at home, aside from all this? Not bad, overall. Janey has been fairly happy and content. She is spending her days like a lot of teenagers do---sleeping in, staying up a bit later than usual, watching a lot of YouTube and movies, eating a lot, things like that. We actually started having a bedtime for her, not to sleep, as no-one can make you sleep, but to be on her bed at 9:30. The good thing, in a way, about her not knowing how to tell time is that 9:30 can be a bit flexible. If we can tell she's not tired, it can be more like 11, if she's exhausted, it can be more like 8. But the amazing thing is she is actually mostly staying on her bed once we say to. The result is Tony and I are actually having some evenings mostly to ourselves, to watch TV or talk or whatever. It's nice.
It's been a little tough this past week, as for the first time since she was 11, Janey actually got her period. The only other time she has was when we gave her medication under the supervision of a specialist. This time, it just occurred. She mostly seems fine with it, not really much noticing it, but she has had what I think are cramps off and on. It's awful to see her crying in pain, and knowing she doesn't really get why it's happening. I've done my best to explain it to her, but I don't know how much she understands. We have been lucky that for whatever reason, she usually doesn't get a period.
I hope all of you are well, and surviving this tough time. I'd love to hear how you are coping. Is there summer school where you are? How do things look for the fall? How is it going with masks, with the isolation, with the general tension a pandemic brings? I hope very much you are all healthy and hanging in there, and I send our love.
Tuesday, May 12, 2020
I realized last night that part of why I don't try it more is that I was a little obsessed with using it "right". I wanted to have her learn to use it for sentences, to move between screens, to try new words with it. But the times it worked best was when I first went to a screen with a theme, like I did last night, feelings or body parts, or foods or colors or things like that. She readily chooses when I do that. I think she can read the words some, and uses them more than the pictures, but I have no way to prove that. But I am going to try to more often just open a screen for her and let her pick.
This morning, I pulled up the feelings screen again. Instantly, Janey picked "Frustrated, Angry, Bored" in rapid succession. Well, that about says it all about life being stuck at home. I told her I felt the same way, and I wish there was more we could do to help. The biggest problem right now is masks. Janey will not wear a mask, and it's the law here in Massachusetts that masks must be worn in public. There is an exception for people with special needs, and I know we could use that, but the other part of it is that we believe in the masks, and are very scared of getting sick. Aside from the disaster that Janey getting COVID-19 would be, if she gave it to Tony or me, we could get very, very sick. So, while the virus is still badly raging in this area, we are stuck. We can go for car rides to nowhere or play in the driveway, but that's about it. And who wouldn't be frustrated, angry and bored----especially if you were 15?
This whole virus life is hard on everyone, but especially hard on kids like Janey. She doesn't have friends to text or FaceTime with. She doesn't read books. She can't take walks even right now...if she would wear a mask, there's still the problem of her touching everything in sight. She is stuck in an endless dull day. And we are trying, but it's hard to break up the boredom. I'm surprised it took her as long as it did to get angry.
Saturday, May 9, 2020
It's a strange exercise, because despite being an autism mother myself for a long time now, what I picture doesn't look much like me. I picture a warrior. I picture a mother who would do anything, anything at all, to help her child---a mother who fights for her child on every level every day. This mother works day and night to get her child everything that might possible help them. She also is completely devoted at home to her child. She cooks special diets, she fills each day with enriching activities, she is completely accepting of her child while somehow also completely determined to give her child what is needed to live a life as close to "normal" as possible.
That's not me. It's not anyone, really, or it's very few people. I've been trying to figure out where the image comes from, and I think it's mostly from books. Autism mothering books don't seem to be quite the vogue they were for a while, but when they were (I think the heyday was the 1990's), they seemed to follow a formula. Child is diagnosed. Mother briefly is overwhelmed and horrified, although of course she knew from the start something was wrong and had to fight to get doctors to see it. Mother decides on a course of action to "cure" child, and follows that course without rest. There are some tough days, but then there's a miracle breakthrough. And at book's end, the child is either completely non-autistic, or they are still a little autistic but only because that autism helps them to have some amazing talent. Not every book is like that, but a very lot were, and I'm a devoted reader. Before ever having Janey, I knew just what an autism mother was like, and strangely, all those years later, I still kind of have that stereotyped picture.
What are autism mothers really like? They are, at least to start, the same as any other mothers. They aren't specially chosen.
I can speak best for myself. I'm no warrior. I back away from any fight I can, or even any disagreement. I'm not good at doing anything without rest. If I knew a way to "cure" Janey, I'd probably be a slacker and not really do it very well. OF course, there isn't a way to cure her, and that would not be my goal at this point even if there was. I didn't fight for Janey to be diagnosed. I didn't want her to be. I am sure I was in quite a bit of denial, back then, but by the time she was diagnosed, it didn't take a lot of fighting to diagnose her---it was pretty obvious to almost anyone what was up.
However, I would have to say there ARE some traits of autism mothers. They are traits that we develop, from living the autism mother life. We don't have them to start, but we have them after some years of raising out kids.
What are they? Well, protectiveness is one. We might not be warriors, but we are ever vigilant. We know how vulnerable our kids are, and we are constantly, every minute of our life, prepared to do what it takes to keep them safe.
Ability to live in the moment is another trait. We can have a day which most parents not living our lives would consider about the toughest day of their life, and wake up the next morning, and if things are better, we can enjoy the new day. We've learned things can change on a dime. I'm willing to bet as a whole we are dealing with less anxiety than most with the whole COVID-19 bit. We know how to live with uncertainly and stress, for sure.
I'd say most of us have a pretty good sense of humor. We can laugh at ourselves, and laugh with our kids. We see life's absurdities, see how what so many people take so earnestly isn't really as important as they think.
That goes along with the next trait---an appreciation of what's really important in life. We have come to know that it's not education. It's not money. It's not a perfect house, a fancy vacation, an active social life or a high IQ. Our kids teach us that. The important things in life are the very little things and the very big things. It's coffee in the morning and a song everyone sings along with. It's a meal that we all enjoy, it's a movie we've seen a hundred times but still like. It's running around in the driveway and getting a good night's sleep. And it's love---loving our kids, loving them exactly as they are, loving them after a day full of screaming or a day full of manic laughter, love filled with pride, love sometimes mixed with tears, but love over all else.
I have to say---the mothers I have met that are living this autism mother life with me (and the fathers too, but in honor of Mother's Day, today is for the mothers) are amazing people. We have a bond forged by shared experiences, and I would venture to say every one of us is a better person because of our loved ones with autism. Happy Mother's Day, with much love, to the autism mothers out there.
Thursday, April 30, 2020
Every day around 4, the new numbers come out for Massachusetts---how many new cases of COVID 19, and how many deaths in the past day. Today, the death number was 252----the highest yet. Somehow, that really hit me. I kept thinking---what if a tornado, or hurricane, or blizzard, or flood hit our state and killed 252 people in a day? It would be something we'd never forget, a horror, something we'd still talk about many years later, like the Worcester Tornado or the Blizzard of '78, weather legends in Massachusetts. It feels in this case like a terror happening off camera. We hear some stories, but mostly, it's unseen---deaths that are all someone's loved one, someone's parent or child or sister or brother, but that we only know as a number. It's terrifying.
And of course, I fear most of all that it will hit us. How could either Tony or I do the job of being Janey's parent without the other? Or what if Janey got sick? Or the boys?
We don't go anyplace. Not at all. Tony takes Janey for a car ride to no-where a few times a day. We play with her in the driveway. She hasn't set foot outside our house, driveway or car for over a month. She would not wear a mask. She wouldn't wear a mask when quite literally her life depended on it, in the hospital after her appendix burst. She touches everything---when I take her for a walk, she runs her hands along walls and fences. It is not safe for her to go out. Even outdoor places in this crowded state are filled with people, many not wearing masks. So we stay home.
Janey is still doing remarkably well being at home. She seems to be thriving. She watches videos, watches Tony cook, eats all day (luckily, she loves healthy food), listens to music, runs around in the driveway. Every day is quite similar, but she doesn't seem to mind. It's a low stress life for her. She doesn't really understand at all why we are home, and that is probably good.
A few times a week, Janey has a short, maybe 20 minute, Zoom meeting with her teacher or with her speech or ABA therapists. Janey tolerates this, and even seems to enjoy it for a few minutes at a time. However, starting next week it's going to be every day, for 2 hours. I have very mixed feelings about this. I know it's being done because special education students are not able to access the learning that other students are currently doing---online resources, worksheets, homework. They need direct teaching. But I can't picture Janey or most of her classmates doing very well with that much Zoom teaching time. It's not that she can't watch a video for that long---goodness knows she can---or that her teachers aren't doing a fabulous job working on ways to engage her---they are amazing. But it has to do with Janey just not quite getting it. She gets school. She's been going to school for a long time. She knows how that works. But someone on a screen talking to her and listening to her and expecting her to respond? I think in her eyes it's some kind of enhanced video, one with a cast of people she happens to know. It's fun for a few minutes, but not for extended periods.
However, it's not like there are really any other options. School can't be held in person right now, and everyone is doing the best they can with that. It's not easy for anyone. In some ways, it's probably easier for Janey than for a lot of kids. Her lack of understanding of the crisis is a protection from worry. Of course she has peers she likes at school, but it's not like I would have been at 15---absolutely crazed being away from my friends for this long.
What really keeps me up at night is how this is all going to play out long time. People seem more divided than ever. Instead of this pulling us all together, it seems to be pulling people apart. That's crazy to me. It's not a matter of politics here. A virus has no politics. But fear can cause divisions, anger, irrationality. I can handle that. But how I fear for Janey, and for all those out there who will always depend on others. She needs a world that is secure enough to leave people feeling they can help others. She needs a world that cares about people, not about the latest political feud or scoring points or getting elected or re-elected. I don't think the extremes on either side of any political rift really understand that. She literally needs someone to watch over her, and she always will. And I can't sleep, because I don't think the world sees her, or all those like her, when they bicker and argue while in one day, in one state, over 250 people died. God help us all.
Tuesday, April 21, 2020
Monday, April 13, 2020
How are things here? Well, mostly okay. Better than I thought they would be a few weeks ago. Janey had a terrible time adjusting to school being closed. For a few weeks, she cried almost all day every day, screamed a great deal, bit her arm, just was not happy at all. And then, fairly suddenly, she seemed to get used to the new normal. It was so wonderful to see her smiling again, and dancing around, and seeming to enjoy life.
The new normal does have some hard parts. One is sleep. Janey's teacher has told me a lot of kids in her class are having trouble with sleep. Janey seems to have chosen a random sleep schedule. She'll be up a lot of the night, sleep a lot of the day, then sleep a night and be up a day, and then have a day with long naps and a night with long anti-naps, awake periods. It's tiring for all of us. But often now at night, she'll watch videos or YouTube and require little help from us, so we can catnap much more than we ever used to be able to.
Janey also, like a lot of us, wants to do things she can't do. We are being very, very, very careful about social distancing. Tony and I know that catching the virus could be extremely serious for either of us, with his quite severe diabetes and my collection of issues. We want to avoid it at all costs. So we haven't been to any stores, we haven't gone to drive-thrus, we leave the house only for car rides to no-where. Janey enjoys these rides, but often asks to go to the grocery store or get McDonalds, things she loves doing especially with Tony. She is accepting no as an answer more than we would have thought, but she isn't happy about the nos.
We are doing some Zoom sessions with Janey's teacher and will start doing some with her therapists, too. Janey isn't too bad with the Zoom learning. She does about 15 minutes worth without asking to stop, thanks to her teacher's creative ideas. Mostly, though, Janey's kind of school activities just don't translate to homeschooling. And we are okay with that. I think often how hard it would be if Janey were in a college prep type situation. We can let this be a time of vocational learning. Janey is helping me with the laundry, helping me vacuum, helping Tony cook, things like that.
My own stress has increased while Janey's has decreased, however. I'm an introvert who can happily go weeks without leaving the house much, so that part is okay, but it's the everyday things in life that are getting harder and harder that keep me up nights. At first, we were able to order groceries online for delivery. Now, it's impossible to get a delivery slot, even if I stay up until midnight and try to get a time as a new day opens up. At some point, we will have to shop. That is going to be scary. Boston is one of the most affected areas in the US, and our particular neighborhood is one of the most affected in the city.
Today, it was very windy, and a tree landed on the wires that provide us with our landlines, cable and internet. We are lucky that we have a backup internet, much slower but still use-able. But somehow losing the landlines and cable scared me. I tried, as did the neighbors, to call Verizon over and over, and it's impossible to get a live person, and for their own reasons, you can't report a down line on-line. You have to talk to someone live. I have no idea when they will be able to fix the wires. I keep telling myself we are fine without them, but somehow this storm and wind and outages seemed like the straw that broke the camel's back for me in terms of stress. Which I keep telling myself is very silly and selfish, as we are not sick and so many people have it so much harder. I think, though, that we live with a base level of stress that never quite goes away, and when even a small amount gets added on, it's hard.
If I get even more self-analytical, I think I'm terrified by how quickly it feels like it all can fall apart---schools closed, hospitals overwhelmed, food shortages, the economy tanking, the ever-present feel of sickness. And throughout history, when things fall apart, it's the most vulnerable among us, people like Janey, that often suffer. Like many others, I read about how ventilators might be rationed, and how one of the criteria items to be considered was "mental retardation" That gave me some nightmares. But even on a less dire level, when budgets get tight, special education often seems to be cut first. More than most, Janey needs a society that cares about all, that provides for all, that sees all lives as valuable.
Someday, this time will be over. I keep thinking of that WWII song "They'll Be Bluebirds Over The White Cliffs of Dover, Tomorrow,Just You Wait and See" They'll be school again, grocery stores you can shop at without fear again, news other than the scary lists of new cases and lives lost. We'll get through this. I am thinking of all of you, and sending you love, and I will close with what so many calls and letters close with lately---be well.