The Scariest Hour

 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.

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.  

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.

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.  

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.  

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.

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.

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.

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.  

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.

A system that only rewards those able to be demanding

 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."

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.

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.

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.  

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".  

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?  

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?

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?

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.

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.

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.

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.

The Cycling Life

 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.

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.

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.

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?

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.

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.

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.  

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.

Hot and bothered

 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.

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.

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.

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 "a smaller number are likely to seek college access under the new law". Then it said that those who do will "improve their chance of employment" and that "Individual campuses will determine their own criteria for acceptance"  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.

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.

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.  

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.

As Janey nears adulthood

 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.  

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.

I guess there are two ways we can view Janey's childhood.  

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.

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.

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.

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"

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.

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.

The Things Janey Cannot Change---a plea for serenity

 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.  

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.

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.

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.

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.  

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.

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.

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.

Here's a picture taken today of my bewildering, beloved Janey.

Autism Awareness/Acceptance/Action Day

 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.

Awareness

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.

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.

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.

Acceptance 

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.

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.

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.

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.

Action

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.

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. 

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.

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.

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.

Never Again

 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?

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.  

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.  

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.

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.

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.

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.

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.

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.  

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.  

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 ( here's the link ) 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.

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.  

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.  

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).  

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.  

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.

Stress

 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.

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.

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.

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.  

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.

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.

And then it's morning, and it all starts again.

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.

Impossible things happen every day

 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.  

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.  

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.  

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.

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.

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.

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.

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.

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?

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.