It is April, and that makes this Autism Awareness Month or Autism Acceptance Month (depending on which camp you fall into) and since my son Jacob is on the spectrum, I figured it would behoove me to write another one of my “big thoughts” posts about A.U.T.I.S.M here at Hopeful Parents.
Yeah. Not so much so. I’m too busy being his mother right now. Which is OK.
Instead you’re going to get one of my ruminating rambling stream of consciousness posts about where we are right now; a snapshot of this one moment in time with my one boy with autism (small letters). Which is OK too.
It’s Spring Break Week and ever since Wednesday noon last week, Jake has been mine, all mine. And right now? That means he wants my attention 24/7. Well, 14 at any rate.
Yes, Jake is one of those rare autistic kids who sleeps really well, usually about 10 or so hours a night, and grumpy if he doesn’t get at least 9. Yes, I really do know how lucky I am.
This was brought home to me today, in conversation with a dear friend who has a son on the spectrum too - quite different than Jacob, but also verbal and classified in the nebulous “mid-high” range of functioning (don’t get me started on how ridiculous the classification system is today, it’s another post for another time). But she was talking to me about her nephew, recently moved to NYC: a 6 year old boy very severely on the spectrum: non-verbal, violent, and a non-sleeper.
Yes the boy Does. Not. Sleep.
Maybe 2 or 3 hours a night. Maybe. On a good night. And her brother, his father, is in a severe state of PTSD as the sole caretaker of his son. And broke because he is unable to work due to same, now living in a homeless shelter. I was helping her brainstorm ideas and resources for them, and silently counting my blessings the whole while.
And then later I came upon a post by Sunday about a book filled with stories of non-verbal supposedly hopeless, “ineducable,” “low-functioning” kids on the spectrum, who, when given a chance to spell out words on a letter board or computer went on to communicate amazing things about themselves from their basic needs to their intelligent, rich inner lives and acute observations of the world around them.
It made me remember that just because a child is looking at the world though the corners of their eyes while spinning and screaming doesn’t necessarily mean they are not taking it in and thinking about it deeply.
Judge not. Assume not. Important credos when dealing with our amazing kids.
And then, later still we were at the upstairs neighbors on an after-dinner playdate – Ethan with one of the two boys, and Jake with their three year-old baby sister.
The situation with the upstairs folks is one of those wonderful, all too rare situations where we are completely accepted as a family and where Jake is known, welcomed and appreciated. (And I can’t even begin to articulate how much it means to us to have them in our lives.)
We ended up in a rousing game charades. Ethan and his friend were acting out TV shows and movies, all as incomprehensible fighting scenes that left the other mom and I in tears with laughter, but thoroughly baffled.
And Jacob, after observing a round or two, wanted to get on the action. He didn’t quite get the SILENT part of the whole thing – but that was understandable as the other boys were using plenty of sound effects (including ear piercing screams) clearly not quite getting the whole “silent” aspect of charades either.
What Jake DID get was... acting out his favorite movies and TV shows! And wow did he do a great job at that (see, scripting DOES come in handy sometimes).
At one moment when Jacob was jumping up and down yelling “My turn!” after the other boys had rolled on the floor wrestling and shooting at each other in an attempt to convey “The Hulk” (really?), my friend turned to me and pointed out how much Jake just wants to be a part of everything that is going on. And she reminded me how much, in this, he has changed in the last few years.
Because I live with him day to day, there is so much I take for granted as he evolves, as his talents emerge. His tremendous enthusiasm and desire for engagement is a gift, a strength. It’s what keeps his teachers falling in love with him, leaving them in tears when their year with him is up.
It’s one of the many things that make him such a joy to parent.
Just a few years ago, I could not have imagined him “getting it” enough to participate in a (noisy) game of charades. But here was Jake, asking for ”my turn” and transforming into Ironman before our eyes, shooting jets of light from the palms of his hands. Right into my heart.
Always, right into my heart.
Varda writes about "birth, death and all the messy stuff in the middle" on her blog "The Squashed Bologna: a slice of life in the sandwich generation" She also tweets as @Squashedmom. Varda is proud to be a Hopeful Parent.
Great post, Varda. I didn't know about this site, so thank you for leading me here!ReplyDelete
what a lovely post as always Varda !ReplyDelete
Right into your heart and then right into mine...ReplyDelete
thank you for telling your stories. It is always so good to read them.