I've been doing the April autism posts for several years now and for some reason I am finding it difficult to do this year.
Partly because Sam is in that age range where parenting is more difficult than ever before. What children at this stage need is far less tangible than the needs of the toddler and young childhood years. Autism just adds a little extra something something to the equation.
When you first enter the world of autism everything is slightly skewed and off center. Things are sort of out of focus and it takes a minute to adjust. You begin to find your balance as the fog of diagnosis and research and information lifts. Slowly but surely you begin to find your way...to make your way...through a world where things are almost the same but not quite and a wrong step has pretty serious consequences.
It's hit and miss and trial and error. But because they're smaller it is easier to see what they need so you can at least have an idea of what they need from you.
Speech therapy? Check.
Occupational therapy? Check.
Special diet? Check.
Move on to medication? Check.
But we're not in that stage anymore. We've done those things.
So now what? What's next?
But the world is almost silent in response. See, until the 90's autism was considered a relatively rare thing. Then in the early 00's it was not only more common to hear the term autism spectrum disorder it seemed we were experiencing an epidemic. (This is generally attributed to better diagnostic categories and awareness of autism in general.) And now, all of those children who were part of that first wave are coming of age and research on autism and the teen years is practically non existent. We are the research.
And let me tell you, we're clueless. When Sam was younger I could write a blog post about going gluten free or how we handled sensory issues. But the issues as a teenager are less concrete and so are the answers.
I'd rather forge ahead on our own though, honestly. Our world view and perspective is a totally different shape than where most of the specialist and experts are coming from. What they consider typical teenage behavior and rebellion is not a paradigm we share. Not for our neurotypical teens much less our autistic teenage son.
Oh, I'll keep reading everything that comes my way and I will sort and sift and mine the nuggets that are beneficial to us. But it will be sorted and sifted through our paradigm...a world view that is Biblical and the same for all of us. Because we may need to adapt and relate to Sam differently but God doesn't. That's our standard. It's where we find our balance and keep our thinking straight.
We'll constantly slow him down and make him do and redo his written work because no matter how much he wants to "just get it over with" so he can play with Legos we want him to learn the truth that we only offer our best efforts and work because we want to honor God with everything we do.
We'll work to help Sam find, establish and use a filter between his brain and his mouth because God says that our words and the way we say them mean something.
We'll continue to insist that he show kindness and respectfulness to everyone because, just like him, they are made in the image of God. And that means we have to help him understand what disrespect is because he simply doesn't get it.
We'll keep drawing him back to understand "doing unto others" because empathy is not something that always comes easily to him.
We will continue to raise him as we raise his sisters...to do justice, and to love kindness, and to walk humbly with our God.
To do anything less would be to despise the gift that he is to us, to our family, to our church, and to our community.
Now for a Sam funny:
He has an amazing knack for inserting his own lyrics into almost any song and still maintaining the original song's melody and pitch. So right now I want you to think of Queen's classic "We Are The Champions". Got it in your head? Good. Now instead of the words, "...no time for losers..." I want you to hear, "...no time for play time..." It was his anthem the other morning when he had to pick up his room instead of playing before school.
And, yes it was stuck in my head almost the entire day.