Gosh, how time flies. Not sure if any of you are still out there, but I’ll assume now and then you peek in for an update. I miss my blog and I miss you guys. Problem is, I’ve got three troublemakers filling up my days with messes and booboos and laughter and lots and lots of jumping off of things. High things. By day’s end my mind feels numb; my body quite pooped. And typing feels like a chore when all I really would like to do is eat chocolate and watch Law and Order.
ANYHOO…
Let’s talk about Smacky. It was what, 10 months ago when we learned that he tested on the spectrum. At the time, I thought finally, finally we have a diagnosis and now we can start getting him what he needs to break out and begin enjoying his life. Finally, we’d have some answers.
Mmmm, yeah.
Turns out there are as many autism treatment answers as there are types of ASD kids, and the spectrum, being ridiculously large and diverse, has become to me this crazy and confusing space which amounts to nothing more than a categorical label. Smacky, on the other hand, is so much more predictable than that… I’ve pretty much learned what freaks him out- and what he can tolerate – and am quite proficient at predicting his breaking points. When I am calm and prepared for him so is he…and that is when I can peacefully observe his incredible mind at work – then theorize, research, talk it out (thank you, RaRa), and discover new ways to accomodate his beautifully different mind in our busy lives.
My girlfriend R has a gifted son and also a nephew with classic autism…she is also a true and old friend, honest and supportive – there is perhaps no one else more suited to talk with about this than her. During a recent visit, she finally decoded what I have seen all along and was able to make sense of it for me: Smacky is a linear thinker. His mind is an open Excel program, constantly organizing cells and columns. Despite having a somewhat advanced vocabulary, he depends on numbers and patterns to process language and is constantly filing bits of information into their appropriate rows. It explains his amazing visual recall; it explains his deep preference for visual learning; and it definitely explains how he’s been able to self-teach himself multiplication (in the car two weeks ago on the way to a birthday party: Mom, if I have five things, and then there are four of those five things, what do I have? I paused, considering the question, half-wishing he wasn’t going there, but kind of thrilled for him that he was. And me, so Socratic: What do you think you’d have? And doesn’t he say 20? First like a question, then after, a definitive YES, 20). The kid knew.
It’s no wonder when asked how he’s feeling he balks – it’s hard to tear him away from his computer mind to something more subjective. And no wonder he tends toward tiredness- constant cataloguing is intense work. Whatever the case, he’s doing it to make sense of his world, and now I know that numbers are an excellent way to draw him toward us. These breakthroughs -these little discoveries -are extremely valuable to me as a parent – the more I understand, the more I can make his day-to-day more manageable for both him and the rest of us.
Smacky, though relatively quite social and verbal, displays much of the more classical autism symptomology. His longstanding gut issues, unwillingness to eat, low muscle tone, lack of coordination, anxiety and affinity for occasional stimming still loom large. He still gets regular OT and PT and his teacher engages him with a more advanced curriculum. I am quite close to declaring this house a gluten-free, casein-free zone to see what difference it might make. I still think about ABA therapy though must admit I can border on obnoxious with my relentless insistence on social responses. I’ve learned not to push him to challenge his physical limits in “unsafe” or social environments but rather let him enjoy his music and theater classes while his friends are skating or swimming.
We’re getting there. His meltdowns are still epic and changes in routine truly screw him up for a bit. He falls all the time. He still tantrums over food issues and hearing sensitivity. But Smacky’s a fascinating, adorable, affectionate little boy. He can be silly and hysterical. He can dance and sing. He’s going to be all right.
And so are we.
Don’t let the scowl fool you – he started breakdancing not two minutes later.
Smacky sounds so much like my daughter. Emma is 6 and a first grader. Like Smacky, she has epic meltdowns, loves numbers, is fatigued all the time and is also silly and hysterical (often from the mental exhaustion, I think). I’d never thought about her brain being like a spreadsheet – I’m going to have to think about that for a while. We’re just starting the testing at school and the staff is learning how to help her keep calm. She freaks over some sounds but not others. Noise in class is a problem and sometimes her meltdowns seem to have another trigger, but we are just realizing how they relate to noise.
I always say she’s a delight until she’s not. And she is.
It was nice to see your post in my reader. Are you doing any crafting? I certainly see the appeal of some Law & Order and a piece of chocolate at the end of the day.
He sounds like he’s doing incredibly well, and you are doing a great job figuring out what he needs. A news report in the UK today said doctors need to listen to parents more when the parent says a child is just not himself and needs to be checked out. The doctor may not see it, but the parent has nursed the child through minor ailments and knows something is not right. The parent knows the child. As you do.
I’m definitely still here – for as long as you care to share. There are too many commonalities among the challenges faced by your family and mine for me to stop reading before you stop writing. It is refreshing to hear from another family managing similar issues from their perspective. Love that you are able to tune into Smacky’s particular take on his world. I try to do the same for my son who isn’t even border line but still has issues that do better with someone to help him and his caregivers/teachers interpret. Wish my husband’s family had been able to do that for him as a child and hope I can do as well if one of the twins I’m carrying needs the same help. Hope you are all feeling settled in your new home!
Of course I’m still here! Always great to hear from you. Smacky sounds well and so do you. Makes me happy
Still here. Glad to hear Smacky is doing well and thriving. I give you so much credit for being able to accommodate his needs (I am not very good at routine and having a child who needed a stringent routine would be very tough for me). Hope all continues to go well.
Smacky is a loveable, intelligent, wonderous little boy with a lifetime of learning and loving ahead of him. He is so very lucky and fortunate to have the parents that were awarded to him. You are in tune and astute to his every need and want and this child will grow to be accepting and contributing to his life ahead of him. Continue to love him for who and what he is and you will all prosper.
Now, if only I was better at Excel !!!!
OK, I’m late but I was thinking about you and so glad that I checked. I loved this post about Smacky… just your thoughtfulness takes my breath away. I’d like to think all parents would be this persistent and positive but it is not the case. Please keep us updated whenever you can. I’d love to see a photo of your rascals, too… It hurt a bit to open your blog and see your tag photo… it seemed like just yesterday you were telling us there was TWO from one spec of hope. Amazing. It’s still amazing. Hope your health has been kind, too.
Just checking in to wish you well! I hope things are going good for your family and the job market is looking up for S. Hope you feel like posting soon and catching us up.