Autism Awareness Day---the adults with autism version

 I've had this blog since Janey was three and first diagnosed.  Now she is 19---hard to believe.  That's a lot of World Autism Awareness Days under our belts.  I was thinking today how my awareness wishes for the general public have changed since she became an adult.  

First of all, there's just that---she's an adult.  There seems to be thought out there that autism is something for children.  I am not sure what people think happens to those children with autism---upon turning 18, they are suddenly no longer autistic?  They just somehow disappear?  No---they are still around, still autistic, still in need of services and help.  

I remember thinking when Janey was getting close to an adult that I wanted to be sure to keep writing about her, to help in my small way to raise awareness of autistic adults.  But as you might have noticed, I write far less than I used to.  That is tied into something else I'd like to make people aware of.  As the years go by, there is less new news.  I might be negative and say there is less hope---but that's not really it.  There is less urgency, somehow, to DO something, to FIX something.  That is an awareness that doesn't need a special day for us to arrive at.  If there is something Janey isn't doing at this point, it's unlikely she will be doing it in the future.  And that's okay.  

My father asked me something the other day that made me think.  He said "You must sometimes have some sadness and regret over things that Janey will never do".  And I realized---I don't.  I don't think a lot about what Janey won't be able to do.  What comes into my head often is the phrase "That's not her path".  It's like how I don't regret that I can't fly, or that I'm not an astronaut, or a world class figure skater.  I was never going to be or do those things.  I don't regret what was not my path, and I don't really feel regret for Janey that she's not going to do things that were never her path---live on her own, get a job, get a high school diploma, go to college.  She has her own path.  That's something I'd like to make people aware of---that everyone has their own path, their own way through life, and we don't all need to have the same milestones along the way.

Lately, much of our life is bureaucracy, the endless series of obstacles to overcome and hoops to jump through to get Janey what she needs as an adult.  THERE'S something I wish people were more aware of---how hard it is to get even the smallest amount of help for people like Janey, except for school.  For example, we are working on registering her for services when she's 22.  She is 19 now, so it might seem early to start, but believe me---it's not.  First, we had to do an endless form and send in a huge amount of paperwork to prove there was a need for her to get adult services.  Then, we got requests to send even more---more reports, more proof of her autism, more IEPs, things like that.  THEN we got assigned a worker, and we took Janey to meet her.  The next day, I did many hours worth of phone interviews about Janey's development and current level of functioning.  You might think all that would be enough.  But of course not.  The worker told us we need a letter from her psychiatrist outlining all the reasons that Janey meets the definition of autism---despite her being diagnosed as such at least 3 times in the paperwork we already sent.  We are working on getting that letter, but getting no response from her psychiatrist at all.  Once we get that letter, if we ever do, finally she is formally put in to MAYBE get services---all this is just part of the application.  Once she is approved (and I would certainly hope she will get approved, but who knows?), we get assigned ANOTHER worker and we start trying to figure out if there are actually any programs out there for her (which it is very possible there won't be, from what I hear),

My boys both went to college, and got good financial aid, and I swear that was about 10 times easier to apply for than all this is.  You could spend 5 minutes with Janey and know she needs lifelong services.  Tony and I are fairly good at paperwork, and we are about out of our minds at this point.  What in the world would someone who might not read well or speak English well do to get this kind of help for their child?  WHY is it so hard?

And this is just ONE of the tasks of adulthood.  We also had to apply for Social Security for Janey, which wasn't quite as complicated but took over a year to be approved, and we had to get guardianship for her, which was another nightmare of complexity and is something we have to repeat EVERY YEAR.    I don't think it has to be this hard.  I think there's an impression out there, and in fact people have said to me that they think people with autism "get all kinds of help and services", like you get the diagnosis and suddenly help and money and respite and programs are all provided in abundance.  I'd like people to be aware that most certainly is not the case.

However, of everything I wish people could be aware of, the biggest is this---Janey is an amazing person.  She is our joy.  She loves so many things---good food, good music, good (in her eyes anyway) videos and movies.  She has a smile that is so wonderful it's impossible to describe if you haven't seen it.  She's funny and beautiful and in her own way, very smart.  You might look at the bare facts about her---a recorded IQ of 30, very little useful speech, not fully toilet trained, unable to read or write---and picture a tragedy.  The tragedy to me is that anyone would think that.  She is everything to us, and she deserves a full and interesting life as much as anyone does.  

I wish sometimes everyone who is responsible for any kind of public policy that affects the disabled could meet Janey.  And meet all the other amazing people out there that I've met because of Janey---I wish they could see for themselves the actual people they are making decisions for.  Maybe I'm a cockeyed optimist, but I think if they could, they would do all they could to make the world a place where Janey and all the others like her could not just survive, but thrive.

The tasks of adulthood and a big surprise possibility

The last few months have felt both uneventful and hectic. The uneventful part is good. Janey has had a very good stretch of happy and easy behavior. She's loving school, enjoying home for the most part and generally being quite a delight. The hectic part---us trying to do what needs to be done for an adult with severe disabilities. We are working on getting legal guardianship for Janey and getting her Social Security income---both things that need to be done when or soon after an adult like Janey in the US turns 18.

Applying for Social Security was surprisingly easy, but that's all that's happened so far---applying. We applied I think last November, and haven't heard a single word since then. We were told it could take until May or so to hear, so we are waiting until then to inquire further, but I certainly hope eventually she is approved. She seems like a pretty straightforward case, but you just never know. We did an application mostly by phone, and did a long questionnaire about her abilities, and she has no income or savings, so we hope we did everything we needed to do and it's just a matter of time.

Guardianship---that's another kettle of fish, to be sure. What an incredibly long and hassle-filled process, which isn't over yet. In Massachusetts, getting guardianship involves getting statements from 3 different professionals---a doctor, a social worker and a psychiatrist. Supposedly the second two get done by the schools, and the first through our health plan. We started with the doctor, in November, and got the paperwork for the schools to do. We had thought there had already been a psych eval. done at the schools, as we were told there would be, but somehow it got lost in the shuffle due to a maternity leave. We eventually got it done, and got the social worker's report, but then realized a couple crucial things were missing. Because Janey takes a psychiatric medication, we needed to have her prescribing psychiatrist sign a form about that, and then there was a question involving whether she was capable of understanding the medication and its potential side effects. That was marked yes, which is certainly not the case.

So, with the pressure of time, as the guardianship papers need to be turned into the court within 6 months of the first signature, we had to get the form done and the question corrected. That involved lots of unanswered calls and waits. We had by that point gotten the help of a free legal service for low income people, but with all the delays, they closed our case. Once we finally got the information we needed, we did get them to reopen it and help us complete the endless forms, and we finally turned in the paper, just in time.

The next step was serving Janey with papers stating we were requesting guardianship of her. This seemed a bit useless to us. Janey doesn't understand anything about the process, and it seemed like someone spending two minutes with her could have told them anything they needed to know. However, we certainly do understand that in getting guardianship of a person, the person is giving up a lot of rights, and the process needs to be complete and thorough. So---we took the papers to serve to the house of my dear friend Maryellen, who has known Janey since birth (she was there when Janey was born!), we did our best to explain things to Janey (we basically told her that we were going to make sure we could always take care of her) and Maryellen handed the papers to Janey, officially serving her (it had to be a non-relative doing this) We videoed the big moment.

Now that the papers have been returned, we actually have a court date, next month. I am crossing my fingers that all goes smoothly and we get guardianship (or actually, Tony gets guardianship---it's recommended that just one parent becomes the guardian) Then there are just reports to be filed at regular intervals after that, etc... It's quite a complex deal.

During the very first phase of all this, when we talked to the developmental pediatrician who did the first form, she suggested we might want to take Janey to a geneticist, since there have been so many advances in genetic testing lately. That sounded like a good idea to us, and I set up the appointment, for which there was quite a wait.

We saw the genetic counselor and the geneticist on Friday. I was not expecting too much information from this visit. I figured by this point, we had covered most bases with Janey, and I had pretty much resigned myself to never getting much in terms of the "whys"---why did Janey regress so suddenly and badly? Why did she have such slow physical development early in life, which isn't usually an autism thing? Why does she have the few other odd things---the lack of periods, the mild scoliosis, the strange eyes rolled up high at times, the occasional severe hand wringing?

To my vast surprise, after a very thorough and well conducted history and physical exam, the two person medical team said they had a strong suspicion that Janey might actually have a genetic disorder---Rett Syndrome.

I had heard of Rett Syndrome. It's always listed as a variant of autism, one that only girls get. But all my reading about it made it sound far more severe than what Janey has. My understanding was that girls with Retts didn't ever walk or talk at all after they regressed, that they had no useful hand function due to hand wringing or other hand movements that never stopped. But the genetic counsellor told me that with the increased availability of genetic testing, it's been realized that there are many forms of Retts, including ones that sound a very lot like Janey. One of those is called the Zappella variant, or the Preserved Speech variant, and girls with that retain some speech and have much more use of their hands.

We agreed to have Janey tested---in fact, to try to get our health plans to cover testing of almost all genes that have been mapped, but that failing, to start with the Retts gene. It will take months to get the results (we haven't even yet gotten the testing kits that come in the mail)

I admit this all has flustered me a good bit. I am not sure why. It wouldn't change anything about Janey. It would perhaps relieve some of the guilt that I imagine you other mothers are familiar with, the feeling that I did something somehow to cause Janey's issues. Rett Syndrome is something that happens at conception. It isn't even passed down by parents. If she has it, her fate, her regression, so much of what she is, was determined the moment she was conceived. I am working, as several friends have advised me, on not trying to analyze why this is feeling like such a shock, a somewhat unwanted shock. But it is.

Of course, we don't know for sure Janey does have Rett Syndrome. If she does, I will go into full research mode, and I will share what I learn with all of you. It sounds like, with the recently discovered variants, that others reading this might also have a girl with Rett Syndrome, without knowing it. And I know I might be getting the facts or terms about it wrong---please forgive me if I am. This is extremely new to me.

The other hugely bizarre thing is that literally DAYS before we learned about the Rett Syndrome possibility, the first ever drug for the syndrome was approved. It's called Daybue. I have no idea if Janey would be a candidate for taking it with a variant, and I've avoided reading too much about it. It would be almost too much to believe that there could be an oral medication that would help Janey's functioning. I can't start thinking about that right now, but as I have so very many times over the years, I wanted to share this journey with all of you---partly, as always, for myself---because it helps to not take these journeys alone.

So---adulthood. Wow. It's been something so far. But at the core of it all is our Janey. She seems to be enjoying life. This past week was vacation week, and several times she brought us her backpack and said "Go on the school bus?" We love her love of school. She has fun with most of the same things she's had fun with for a while---car rides, eating everything and anything Daddy makes, watching Vampirina and Little Einsteins and Fancy Nancy and all the Toy Stories, listening to music, jumping and dancing---just being our (most of the time) joy. Janey, you are turning out to be one fine adult!

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.

Vision Statement

When talking to a friend today about IEPs, we hit on the topic of vision statements.  I had noticed that IEP meetings often start with us being asked what our vision is for Janey's future.  I had thought that was just kind of a warming up question, but in reading a bit, I realized it's required in some states, and used in most.  Here's a link to an article about it.

That got me thinking.  I don't think I've ever planned an answer to that question, which is probably because I don't spend a lot of time thinking about visions for the future.  Maybe that's just me.  Someone once asked me what I had wanted to be when I grew up, and I thought about it and realized I never really had an ambition.  I figured life would happen as it's going to happen, and it has.  That's not all good, of course, but I don't think it's all bad, either.

But what IS my vision for Janey in the future?  I made myself think about it today.  It's tough, because my mind likes to think up scary scenarios.  It goes to places that certainly aren't my vision, unless it's some unbid vision from some dark places.  And maybe that's my problem, the word vision.  A vision is something that seems to be to be given to you.  You don't read poems or old literature about PLANNING a vision.  You GET a vision. 

But if I try to plan a vision, a quote keeps getting in my way, one that I remember hearing for the first time and thinking "Well, that's the most insightful thing I've ever heard"  It's been attributed to various people, but I'll pick John Lennon, and it goes "Life is what happens to you while you're busy making other plans"  There are so many variables, so many surprises, so many detours, that life really is what actually happens, as we plan for a different life, one we never actually live.

Okay---all that said.  But still, I want to try to have a vision. 

Here it is, the honest one, what I really do want for Janey.  I want her to live with Tony and me, until we are gone, until we die or are too sick to care for her.  I want those years with us to be happy years.  I want her to have as much agency as she can over her own life.  I want her to make choices as to how she wants to spend her time, and I want to honor those choices as much as possible.  I want her life to be as free from pain as it can be.  I want her to always be with those who truly love her.  I want her life to continue the best parts of now.  I want her to have car rides with Tony, to snuggle with me and sing Christmas songs together, to watch her favorite movies and dance with excitement, to ask in her sweet voice for bacon or coffee or soup or tomatoes and get them.  When we are no longer able to care for her, I want her to live with one or both of her brothers.

I don't feel like that's what I'm supposed to say.  I think I'm supposed to want more independence for her.  I think there's supposed to be some kind of sheltered work in there.  I think I'm not supposed to rely on her brothers to take up her care.  I think I should include skills like using money, or riding buses, or doing dishes.

Fear hits me here.  Right now, with Janey going to school, I feel able to trust her time away from us is safe and meaningful.  And maybe that could continue, with a group home or a day program or something else for autistic adults.

But something haunts me.  It's a remark by the adolescent specialist we've been seeing, to try to figure out a few physical differences in Janey's development.  At the end of a good appointment, she said "Well, we do want to start Janey soon on something to prevent pregnancy"  And although I should have heard enough to not have been knocked flat by that statement, I was, indeed, knocked flat.  Even though many years ago, Janey's psychiatrist put it more bluntly, telling us "She WILL be abused"  What kind of world do we live in, that because Janey is non-verbal and sweet and beautiful, she WILL be abused?  NO.  NOT ON MY WATCH.

But of course, that isn't my only fear.  Tonight, as I wrote this, Janey was using her iPad.  Or trying to.  YouTube wasn't loading.  Her talking, after some good stretches, is at a low point right now.  And she is tired---her early to bed genes are strong.  So she said nothing.  I was distracted by writing when I thought she was watching videos, while instead, she was endlessly touching a link that didn't work.  A small thing, but somehow it brought up thoughts of her not being understood, of wanting the small things she wants and not knowing how to communicate them, of her either crying in despair or even worse, just silently trying and trying and never getting what she is trying to get.

I have more thought about this, but this is dark enough already.  I'll try to salvage some good from this thought exercise.  The purpose of asking for a vision is, of course, to prepare for that vision, to know what needs to be done to make it come true.  How can we prepare for our true vision---Janey here with us, happy and living a meaningful life?

We can teach her how to access the things she enjoys, like movies and videos and music.  We can work on simple food preparation more, so she can fix herself the meals she loves when she wants them.  We can keep her healthy, free of physical pain as possible, free of mental torment as much as we can.  We can work on coping skills for her for things like waiting, so that half hour she sometimes has to wait for a ride doesn't lead to tears.  We can try, although this is a hard one with our current finances, to prepare for when her brothers care for her, to leave her somehow or other a trust.  We can arrange our house and our lives to give her what she needs and still preserve enough of what Tony and I need so we are all happy, not burnt out.  See---this vision planning works a little!

I have a bigger vision, if I really work at it.  It involves not just Janey, but the whole world of Janeys.  It's a vision of a world that includes people like her, that keeps them safe while giving them full lives.  It's what we've been lucky enough to find in schools for Janey, extended life-long.  I don't see that world happening any time soon, but I can plan for that vision, too.  I can keep talking about Janey's life and her needs and wants and talents.  I can vote for politicians, regardless of the ugly partisan world today, that understand special needs.  I can push in the small ways I am able for a future that better matches the hopeful plans we make when we love our children like Janey.

A tough day and a scary news article---thoughts on respite

Today was one of those days.  Janey and I were both not in the best of moods.  I tried hard to keep her happy, and I'm sure she tried hard to be happy, but it didn't work out.  From my perspective, I spent hours doing exactly what she wanted---giving her the food she asked for, changing her TV shows, taking her for a car ride, snuggling with her---and then each time I didn't do exactly what she asked the minute she asked, she blew up and screamed at me.  I'm sure her perspective would be different, but I can only speak for sure about mine.  I felt tired, unappreciated, sick of it all.

And then I saw this news piece...  Read it here

But for the kindness of a stranger, this could have been a horrible tragedy.  As it is, it gives an answer, right there, to why I worry so much, why I sometimes give in to despair.  Here, in one of the riches countries in history, in a state with so many resources, THAT'S the best that is offered to care for people like Janey?  I have so many questions about how the man came to be alone on the very busy highway, but at the very, very least, there was some huge negligence going on, and by not reporting him for missing for as long as happened, I suspect some covering up, too.

My friend Michelle and I often joke back and forth with each other when we've had rough days (or weeks or months or years)---"I've got an idea!  Why don't you just get some respite?"  Then we laugh and laugh.  Because basically, there is next to no true respite available.  And when there is, well, that story above illustrates the fears I have of it.  It brought back flashbacks to the one respite I did try---you can read about there here if you wish.

Why is there so little respite, and why, when there IS a chance for there to be respite, or adult care, are there so many problems with it?

There's a few reasons, I think.  One is that unless you yourself have parented, long term, a child like Janey, a child with very little language who functions intellectually at about a toddler level, you don't really get it.  You might be as well meaning as the day is long, but you don't totally understand the EVERY SINGLE MINUTE part of the parenting.  There are no breaks, ever.  You can't let your attention slide.  This does two things.  Because people can't picture how all-consuming the job is, they don't understand why we NEED respite as much as we do.  And when people are hired to provide respite, or, bless them, volunteer to do respite, they often find themselves over their heads.  That was the case with the respite house we took Janey to.  They were hugely well meaning, they were well funded, they were a lovely place.  But they didn't get how much Janey (and other kids, I am sure, but I can only say for sure about Janey) needed to be watched.  

Another reason---our society doesn't value people who care for those with special needs very much.  We don't pay them enough, we don't train them enough, we don't screen them enough.  We as parents care for our children because we love them, because they are precious to us.  And even for us, it's too much sometimes.  I can't tell you how much I welcome Tony's arrival home every night, to give me a break.  I can't tell you how much I look forward to the school bus coming in the morning.  So, if someone else is caring for Janey, someone who is not her parent, I know it's a tough job.  I want that person to be well compensated, well trained and most absolutely well screened.  I want them to be valued, and to be treated as valued, but also I want them held to incredibly high standards.

The third reason is a dark one.  I truly believe most people are very good people.  But some people aren't.  And those people are sometimes drawn to people like Janey, who don't communicate well.  That is a horrible, everlasting fear of mine---that rare kind of person.  Or less evilly, some people snap when they lose patience.  Or simply tune out. Whatever happened the other day with the autistic man in the article---someone "caring" for him either did something cruel and evil, or someone lost patience, or someone tuned out.  And in cases like this, or the case of the many of us with children similar to Janey---well, there can be some very horrible endings.  Or horrible happenings that we never do find out about, because our children can't tell us.  And that, my friends, is why, even in those rare cases where there is respite, or as I look to the future, when Janey needs adult care, I don't have a lot of trust or a lot of hope.  Or a lot of answers.

The mother I mean to be vs. the mother I am

A few weeks ago, I attended a panel at Janey's school made up of five adult women with autism.  It was tremendously moving and informative.  I left that day determined to work harder to help Janey reach her potential, as the women on the panel had, to strive to ignore labels about functioning, to enrich Janey's life in any way I could, but also to respect her as a person, to follow her lead.

I'm not doing a good job.

The bane of my existance

Let's talk about last night, or, rather, early this morning.  Janey went to sleep about eight last night, late for her.  She woke at 1 am.  Tony tried to get her back to sleep, but she was having none of it.  At two, she came to me in bed and woke me up.  I told Tony to sleep and I would take over.  At first Janey watched YouTube videos on the TV, which can be used as a computer monitor.  She does this with complete ease, but after a while, she wanted to watch things on Netflix or Hulu or Amazon, which is done through an Amazon device.  Although the device is in my eyes no more complicated than a mouse, probably less so, all my attempts to teach Janey to use it have failed.  She wants us to put on the shows for her.  That's fine, except she constantly wants to change shows.  After we spend long moments figuring out what show she wants, she watches it for about 30 seconds and then wants us to switch to something else.  That gets old fast at the best of times, and in the middle of the night, it gets unbearably old unbearably fast.  We hobbled through the night, with both of us speaking harshly to the other at times, both of us not doing what the other wanted done.

So what do I do?  How do I handle this?  I KNOW she could learn to use the remote that controls the device.  But when I try, she screams.  She lashes out.  She gets hysterical.  If I simply refuse to change shows any more, she will persist with asking and screaming and so on for hours and hours.  She doesn't quit.  She doesn't give up.  Believe me, I have tried this for YEARS.

I've told myself at times to just accept this, to see it as a time to interact.  Fine.  But it's not an enriching interaction.  It's the same, every time---finding a show she wants and picking the episode she wants, through a combination of single words and backwards and forwards pointing, putting on the show, then repeating in less than a minute.  Over and over and over and over and over, until finally somehow she finds a show she actually wants to watch---for maybe 5 or 10 minutes.  Then it starts again.

This interaction is mirrored in so many others.  Janey asks for a car ride.  She wants to get chips at the store.  She wants a shower.  Nothing else will do.  No variations work.  No amount of refusing, or explaining, or substitution, or distraction, or anything else, works.  When I try something new, she refuses it.  When I give in and do what she wants, but I don't do it fast enough, or exactly the same as the time before, or with a happy enough demeanor, she is furious, a fury that doesn't stop until it gets done right.

In my dream of the mother I want to be, I am endlessly patient. I am creative enough to figure out ways to either break her out of her routines or subtly enrich them.  I am never tired, never sleep deprived, never bored, never just fed up.  In my dreams, Janey is different too.  She responds to my patience by trying new activities.  She surprises me with glimpses of the thoughts I know she has stored in her mind.  She is quirkily fascinating.  She is a full partner in our joined quest to give her the most wonderful life a girl with autism ever had.

The problem here is, of course, that Janey and I am both human.  We are not stereotypes.  We are not perfect.  I get tired too easily, thanks to a thyroid that has given up and a liver damaged by the medication that was supposed to help me have a safe pregnancy with Janey and the lovely "unspecified autoimmune disease" which is slowly getting specified as several types that cause, among other health issues, extreme fatigue. In addition, I am often too easily discouraged. My desire for difficult interactions to end quickly can cause me to take the easy way out of them often.  Janey is stubborn, unyielding.  She is who she is, not because of autism or despite autism but simply because we all have a collection of traits that make us who we are.  She is strong, determined, enthusiastic, yes, but also stubborn and unyielding.  Together, we make up a mother/daughter pair with many strengths, but also many weaknesses.

The mother I mean to be finds a way around the challenges.  The mother I am---sometimes not.  Janey and I am both who we are.  Perhaps that is the message here.  We all do the best we can, every mother and daughter, with the limitations and weaknesses we have, but also with our strengths and our determination and our love.

Autism and Routines, with thanks to Naoki Higashida

I recently got a chance to review the latest book by Naoki Higashida, a Japanese man with autism who writes by means of pointing to letters on a letterboard.  I'm ashamed to say I've owned "The Reason I Jump" for years, and hadn't read it until now.  When I got the new book, "Fall Down 7 Times Get up 8", I read them both.

The books were not what I expected.  They were far more helpful than I'd expected, and more nuanced.  The author is very honest, and the books are far from all positive---there are many parts of being autistic that he says are very painful.  He sounds much like Janey in terms of his verbal speech and his level of independence.  That doesn't mean that she is like him, any more than I'm like others who speak at my level, but it's a chance to get a glimpse into the mind of someone with more insight into Janey's mind than most.

I won't go over everything about the books---you can read them if you want to.  But what I want to talk about is what I learned about autistic routines, both from the books and from applying what I read to what I've seen in Janey.

Higashida explains (and I'm paraphrasing here) that routines are not really a positive or negative thing.  It's not that they bring him pleasure or make him upset.  It's more than they simply MUST be done.  They are like breathing or eating.  Once something is established as a routine, it feels essential to follow the routine.  If someone tries to prevent this, it's extremely upsetting---again, not because he enjoys the routine so much, but because it feels like something vital is being stopped.

From this, I thought about how routines get established.  We establish routines all the time, often without realizing it.  For example, if Janey goes onto the bed and wets it during the day, our next part in the routine is to get upset, to remind her we always go in the potty, and to change the bed.  By following our parts of the routine, we further set it in place.  I can see how that goes.  If Janey feels the need to urinate, she starts her part of the routine---go to the bed.  We follow our parts---get upset, remind her, change the bed.  The routine to her isn't what it is to us.  She doesn't see it as "IF I wet the bed, THEN they will get all upset, SO I shouldn't wet the bed"  She sees it as a series of events that are linked.

Getting ice cream---one of the happy branches of the routine!

It's making me think that one of the big keys to both Janey and us being happy is to do everything to keep routines that make us unhappy from being established, and do everything to make routines that make us happy established.  I've done this sometimes, without thinking of it as such.  For example, after school used to be a hellish time often.  I thought about what after-school things are positive for Janey and for me.  The first part of coming home for her is always taking off her shoes and going to the refrigerator and looking for a snack.  Now, I always have a snack she will like waiting for her to find.  Before, I'd wait for her to ask, and if she asked for something I didn't have, the routine was for her to freak out.  Now, since she does the looking, her routine is to eat the food she likes that is there.  Next, she watches a video.  Before, if I was in the middle of something, I'd tell her to wait a bit to put on the show she wanted.  Then she'd scream.  Now, I make myself available when I know she'll want a show, and put it on right away.  The routine now is to watch the show happily, and my routine is to get to sit there and read or knit.  We are both happy.

It's my parts of the routine that I can change.  Much of the routine for her is reactions to things I do.  It's FAR easier for me to change the things I do to get the reactions I want from her than it is for her to change her routine.  I think this is where I often used to get tripped up, and where things like ABA don't really take into consideration how the mind of someone with autism works.  We think in terms of actions being modified by feelings.  If someone reacts angrily, or someone gives you a treat that makes you happy, we assume that will change the next step.  We think of thoughts like this... "Mama waited to put on the video because she was busy, and when I screamed, she said she wasn't putting it on because I was screaming, so next time, I won't scream"  But Janey thinks (I believe) more like "First I ask for a video.  Then Mama says not right now.  Then I scream.  Then I wait a little more.  Then later Mama puts on the video"  Janey's screaming is part of the routine.  But if I am available to put on the video right way, I switch Janey to a new routine, a branch in the other one, one where she happily watches a video and I don't have to hear screaming.

So much of what has worked over the past few easier years has come about by what many would probably see as us "giving in" to Janey.  What I think people who see it that way don't get is that we ALL are much happier.  Why is "giving in" seen as bad?  I think it's because we again don't think the way Janey thinks.  We think of someone more typical, someone who might think like "So if I make a fuss, I get what I want.  I need to use that!"  Janey doesn't think that way.  She doesn't generalize that way.  She thinks in terms of the sequence.  The sequence can include screaming or not, but it's not a cause and effect in her mind.

I might not be explaining this as well as I wish I could, but in my mind, it's been a bit of a breakthrough. Higashida explains routines much better than I do.  And I very much appreciate how hard it was for him to write the books, and I thank him for doing so.  His insight is going to make at least a few lives, those of our family, easier and happier.

Arranging

Setting up the scene---Janey is home from school in the afternoon.  She has asked me to put on a show---let's say Kipper.  As the show starts, she starts her routine.  She takes the remote from me and places it in the middle of the right couch cushion.  She observes it, and then re-places it several times to make sure it's right in the middle.  She then surveys the room, and looks for laundry baskets.  I have four of them, and I tend to leave them in the room after folding laundry.  Janey goes to any she sees and moves them carefully to the place she sees as correct.  Then, if there are any shoes in the room, they need to be lined up, left on the left and right on the right, next to each other.  If it's a light arranging day, the next step is the last---she looks in the trash and makes sure nothing in there is out of place.  Certain things don't belong there---magazines, wet pull-ups, most any form of crumpled paper.  Those items get taken out and put next to the can.  Then, and only then, does Janey settle down to watch her video.

Although it sounds hard to believe, I first noticed Janey arranging things literally as soon as she could purposely use her hands.  She would make sure toys she could reach were symmetrically positioned.  Her arranging habits well pre-date her autism diagnosis.  Over the years, the habit has ebbed and flowed, sometimes almost disappearing for long periods, sometimes being out in force.  Lately, it's at a huge peak.  The arranging rituals can take a very long time.  They are almost always done before she does something she enjoys or something relaxing---before a video or before going to sleep at night.

Unlike many of Janey's behaviors, I relate very much to the organizing and arranging.  Not that I am much of an arranger.  But I know how it is to feel I need to do something that to an outsider doesn't seem to make much sense.  I'm completely sure Janey has OCD (Obsessive-Compulsive Disorder).  I am sure because I also have it.

My OCD never took the form of arranging.  It's funny (in a strange, not ha-ha way)---OCD has a lot of forms, and most people specialize in one of them.  I was a checker.  I checked things.  On my worse days, I could check my pocketbook to make sure my credit cards and keys were in it thirty times in a row.  I could re-open a bill envelope over and over to make sure I put the check in it.  I could go down to the cellar enough to get a great workout to make sure I'd actually started the dryer.

OCD doesn't bother me much any more.  Mine has been very well under control, with medication, for a long time now.  Even before that, like with Janey, sometimes years and years would go by without the checking urges.  It's a strange disorder.  Like Janey also, I think I had OCD pretty much from birth.  I can remember as far back as my memory goes needing to check things, feeling like if I didn't check them, sometimes horrible, something unacceptable, would happen.  Unlike Janey, though, I usually knew that my checking made no sense.  Most people with OCD have that knowledge.  We know our obsessions and compulsions are generated by our minds, but that doesn't make them any easier to not do.  I don't think Janey understands that.  I don't think she has the kind of perspective that allows her to see that.

Sometimes, when the arranging gets out of hand, almost anyone would feel like saying, with some degree of impatience, "Just stop that!  Stop moving the baskets!  Stop taking things out of the trash!  Stop uncrossing people's crossed legs (another big one)!"  But I don't usually feel that way.  I know how it feels.  I know how, despite in my case knowing full well I didn't need to check my pocketbook again, I still couldn't help doing it, no matter how hard to tried to fight it.

When we next see Janey's psychiatrist, I'm going to do my level best to explain more effectively than I have in the past what is going on, and ask him about medication specifically for OCD.  I have resisted, partially because I hate the thought of her being on another medication and also because, interestingly, I think the lack of perspective in her situation makes the OCD less distressing.  It's a bit of a problem for us, but for her, I think it isn't, mostly.  I think it just feels like something that needs to be done, or it did in the past, until this latest escalation.  Now, occasionally, she is getting upset, because part of her arranging now involves my placement.  I am supposed to be in the bedroom while she watches her shows.  I can't always be there, partly because I need to check on her quite often and partly because I don't always want to just stay in there for long periods.  So far, she has mostly accepted it when I've explained I have to be elsewhere---at least for a few minutes, until she tries again to push me to the bedroom.

In a strange, small way, it feels good to be able to relate to one of Janey's behaviors as I do with this one.  I'm not autistic, which is why I often get some very good insight from those adults I know who are autistic on Janey's behavior.  With the OCD, I have the perspective. I've talked before about having OCD, but not quite in this detail, and it's a little hard to do, but also---very fair.  I write about Janey, hoping I am representing her in a way she'd approve of if she could read what I wrote, and so I should also be willing to be open about myself.

Now, to have a few minutes to myself before the bus arrives home and we start this afternoon's session of arranging.....