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Sunday, October 15, 2017

Janey's end of the spectrum

I don't like the term "low-functioning autism".  I don't like it, but I use it sometimes anyway.  I use it because "autism" has come to encompass such a range that it's very hard to explain to those who haven't met Janey the level of care she needs. 
Janey

I don't like the "low" part of the word.  Janey isn't lower than anyone.  She's as valuable a part of society as anyone else.  She has much to offer the world.  She is an interesting, complex, talented person.  As she gets older and Tony and I are better able to understand her, I realize that in so many ways, there are easier parts and harder parts of raising any child at any age.  We are used to Janey's harder parts. They are still hard sometimes.  When Janey screams all weekend as she did a few weekends ago, when she is in pain and can't tell us how or where, when we need to change her bed almost every night...that's hard.  But she's 13, and she has never once said she hated us.  She's never made a snide comment in her life.  She is excited, thrilled even, by a drive-through trip to McDonalds.  Her joy when a song she loves comes in in the car---it's a joy so infectious that I can't even imagine much that is better.

However, she has care needs that are far beyond what most 13 year olds have.  She cannot be alone, not for a moment.  She is not fully toilet trained.  She can't read, write or most of the time talk in full sentences.  She cannot dress herself completely.  

Janey will never live alone.  I used to modify statements like that with "most likely..." but I don't anymore.  She is not going to live alone.  She will live with us until we are gone.  Then...well, that is part of why I want a term that explains Janey's needs better.  That is one of the  black holes in my thoughts.

The other black hole, one I can barely think about or write about, is the fear of abuse.  It is why I no longer think much about respite.  I trust Janey's school, and I trust my family, and close friends.  But respite, paid respite, is not coming from those sources. And I can't pay enough to have Janey cared for in the way I would feel comfortable with, not in this part of the country anyway.  I would want Janey cared for by someone extremely knowledgable both about autism and about her in particular, and I would want there to be a formal backup in place for that person at all times.  Caring for Janey is a high intensity job.  If the caregiver needs or wanted a break, they need to be able to take one, and that is where I think often the problems occur---either when someone is at the breaking point or when they leave a child in the care of someone else for a bit.  Respite for people like Janey needs to be a well-planned, well-vetted, well-staffed situation.

Someday, Tony and I are not going to be on this earth.  And before that, someday I imagine a day will come when neither of us can care for her, and her brothers can't either.  And that is where it's going to become important for society in general to understand her needs, and of course not just her needs, but the needs of others like her, those on the higher need end of the autistic spectrum.

If we don't talk about the needs of children like Janey, if we focus only on being positive, or only on children who are more able to care for themselves, we can't expect people to understand what her needs and the needs of her peers are.  There are those who might say I shouldn't speak for Janey.  I can respect that view, but I also respectfully disagree.  Although Janey certainly can communicate, she can't do so in such a way that explains her needs.  I would rather face my last days in the future knowing that society understood and has provided for Janey's needs than having remained silent about those needs.

Call it what you want to.  Call it severe autism, or low-functioning autism, or classic autism.  But there is a huge divide between Janey and a child who will someday be capable of living on their own.  They both certainly may be autistic, in the wide sense of the world, but at the end of the day, Janey needs a higher level of care, and it is desperately important that those with the power to make fiscal and planning decisions realize that.  We need to make society aware that children like Janey exist, and are worthy of the best we can give them.

1 comment:

Free Yoke said...

My 7 old daughter was classified as PDD-NOS but now, of course, everyone is rolled into the autism category which is so broad that it isn't that descriptive. The public tends to assume autism means smart but socially inept.

We recently moved once again and now we are in north central Massachusetts. I came here for my job which I think was available due to record low unemployment in the country opening up jobs that local people don't apply for because they are already working. We already ran into a 1 year waiting list for ABA at one place and I'm not sure what our insurance will cover. The schools are always kind of a blank for us as our daughter can't relate what goes on. I was unhappy about her getting placed in a class for 3 to 5 year old kids based on her less than impressive first impression at a school intake meeting. She was shouting "Dumbo!" and "shaboda!" (whatever that means) doing her ADHD routine. My wife was there but I was at work. I would have stressed that putting her in with younger kids doesn't make her act more mature and she doesn't learn much from them.

For the most part this of the country seems more friendly as most people here seem to be born and raised here. It's more small town than most places I've lived. I'm the only person at work who's from outside the state. One guy in parking lot was pointing at my Texas license plate. I am more worried about people not knowing what's going on and getting involved in a negative way. My daughter is up at night yelling and laughing but at least the neighbors in our apartment building haven't been an issue yet. We can live her alone for while in a controlled place like home but even then we have to be on our toes. She got out of the apartment and was wandering down the apartment building hallway one time. She can injure her little brother while wrestling but sometimes she looks more "normal" when they play together. He's the only kid she reacts to.