I wish I was 17, so I knew how to type irony. Perhaps I should add a hashtag
We are 1000 kms north of home again, doing the post Christmas family square dance. As people age, the delayed family visit is actually a much more civilised approach to the holidays (dementia and hearing problems + an autistic child with chronic hyperacusis = the less people in the room the better).
The good side of the ledger here is that Billy is universally loved by his family. The oldies would do anything for a hug, a smile, hell, even an answer to a simple question would do. The deficit part is that only a select few have been able to gain any real understanding of him, and how he operates.
So, the desperate search for love ends in elderly folk yelling at him (because he clearly can’t hear), bombarding him with language (because he clearly didn’t understand it the first time), editorialising on his behaviour while he’s still in the room (because it is so different it is clearly ‘wrong’, ‘strange’ and ‘silly’), rinse, repeat endlessly.
Billy’s eight. He’s autistic. He has been autistic for longer than we’ve known. These tactics have not worked in eight years, which makes me wonder why they keep on using them.
We have provided books, articles, simple directions all sorts of things to try and help family communicate effectively with Billy. We’ve talked, and talked to them, trying to model the language and the methods that will get through to him. Sadly, we may as well have been singing Lady Gaga to them.
I know they’re old. It’s OK. But it’s sad because they are family, the only family he’s got, and they have barely scratched the surface of Billy’s excellentness.
When they fail to get a response, they lapse into a much more damaging mode of communication. They talk at him like he’s not there, telling him (in an admittedly loving tone) how he’s not ‘normal’, not ‘like other kids’ they know, and definitely needs to get used to the way ‘people’ do things.
They tell him the jerks and grimaces that overtake his beautiful body are ‘silly’ and he should stop those or people will laugh.
They think they are doing the right thing.
I hear that, and so I do not intervene. I feel like the worst parent in the world for not intervening. But the grown ups want contact with Billy, and this is all they seem to be able to muster. I don’t want to negate their efforts, and I don’t want to be the over-protective helicopter mother (that I am in their heads anyway) so I let it slide. It feels wrong. It is wrong. But the grown ups have demonstrated clearly that they can’t change, and maybe this is as good as it gets.
It has made me think a lot about language. How we fight and fight for those first few words from our(for those of us lucky enough to hear them), without (at least me) knowing that it’s not really the autistic child that has the most language learning to do.
We’ve been fortunate, for sure, but yesterday we learned a little more about the impact of the language that gets used around Billy.
Picture the scene.
His grandmother’s dog barks. This is pretty much Billy’s kryptonite (or one of his kryptonites). This sends him into a spiral, where he repeatedly asks to go home, needs space between him and the dog and the unpredictable yelling grandparents.
During the spiral, he makes this pronouncement.
‘My brain is sad, Daddy. My brain is sad and it’s silly. People will look at me and laugh because they will know that I have a sad brain.’
Oh, awesome. Truly fabulous. This is what my child has picked up about himself over the last couple of days.
I’m not going to say it to the people who helped place those words in his head (lest Armageddon descend on us all), but I will say it to you (and I know I’m preaching to the choir)…
- · Just because a child is not answering, doesn’t mean they are not hearing.
- · Just because a child is not speaking, doesn’t mean they are not listening.
- · Just because a child is not looking at you, does not mean they are not understanding.
There are a few shining gems of older folk for sure, but I am starting to think I’ll give up trying to help the rest of them understand.
We will, instead, try to help Billy understand that he should not believe everything he hears.
Which, given autism, will be incredibly easy, right?
Valerie’s increasingly random ravings can be found at Jump on the Rollercoaster.