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.
