The first time a doctor (offhandedly) described my son as "special needs," I began weeping. She had been telling me about summer camp options nearby, and I'd been listening attentively, nodding, taking interest, knowing on some level of course we were talking about special needs camps, but once she said it, my ears collapsed. I could take in no other words. I wept.
I practiced saying the words later that day. Special needs. Of course, I already knew it! But knowing and saying it can be dissimilar. Special needs. Special needs. I needed to say it, repeat it, own it, get over it, demystify it, take the sting out, find my comfort spot. Special needs.
Today we went to a pool party I had learned about online for spectrum kids in our area. So, did that make it a special needs party? Okay, I guess so, whatever. All I know is, I wept just a little bit today, and it felt so good. For one thing, my boy had a blast in the water wearing his floaty suit and playing with his daddy. I thought they looked so beautiful in the water together that I snapped over a dozen photos just of them. For another thing, I never once felt I needed to preempt, apologize, explain, or worry. The rooster didn't stand out not one single little bit, and everyone just had a good time, despite the mercury rising WELL above 100 on our first day of summer. The funniest thing? PEACHES was the difficult one! She grew anxious around the dog, obsessed on a little Buddah she found inside the hosts' home, and became clingy when children approached her. It was great! I didn't preempt, apologize, explain, or worry about her either. I just WAS. We were just a family meeting new friends at a party.
Monday morning will be the rooster's first day of summer camp at our mainstream school, intended as a transition to the next grade of preschool, only he'll be transitioning back to the same grade again with a new crop of kids younger than he is. I feel the knot that lets me know I'm not as ready for it as I've been pretending. I feel the concern about the challenges he'll face, and the need I will feel to preempt, apologize, explain, and worry. This is what lets me know for sure that the rooster IS a special needs kid.
The truth I can't deny is that sometimes I forget. Sometimes I kid myself. Sometimes I let the denial win. Sometimes I replay the positives in my head like a hypnotic phrase, wallowing in the successes, lulled by progress... Today, when a mom asked what exactly were the rooster's challenges because she couldn't tell any of them, I felt the siren call of denial... Perhaps the rooster is growing out of all his challenges? But the reality is that he has plenty more challenges, not ones that necessarily show themselves when he's blissed out in a swimming pool on a Saturday in June! The reality is that, after preschool, I will almost definitely need to find a good special needs environment for my boy in public school, because he will have gone as far as our "typical" private school will allow.
My boy has special needs.
Well, okay, he is a special boy, and I vow to do all I can to figure out what those needs are, and find a way to meet them.
After all, don't we all have special needs?
I love my rooster.
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Two kids, two full time careers - lots of people do it gracefully, but for me it's a challenge, particularly as I struggle with my boy, the rooster, and his "constellation" of health and developmental issues. Medicine so far fails to cure what ails us, so I'm trying a self-prescribed intensive dose of blogging to see if that does the trick.
4 comments:
The Rooster is who he is. Just as with any child, you have that amazing & special job to figure out how best to help him. That's how I see it. :)
XO R
Me, too. :-)
We tend to forget about joey being "special needs", too. It's not denial,I don't think; it is just that Joey is who he is, and that's who he is. All the labels and whatever only apply when he is out somewhere and needs support. With us, he's supported by default.
I think that's what you're getting with the Rooster- to you and your family, he's the Rooster. And that's who he is. The whole special needs thing doesn't apply. He's just Rooster.
So wallow in the progress. Look at all the good stuff. We're all up for the challenges. Having labels just helps you prepare for some of the challenges Rooster might have.
my boy has special needs too - and I've come to the conclusion that we all do!
we all have specific needs and desires & ways of communicating - our personalities & the time and energy they require is so vastly diverse that each requires it's only set of rules....I remind myself of that daily - as I tend to cringe, cry & even laugh occassionally when I hear the term "special needs" (usually to avoid tears)....but I also understand the need to define those needs so that we can work together to meet them...to meet him, where he is.
for my mom growing up - meeting her "special needs" meant everything had to look "just so" and everyone's expectations had to be met "properly"...and you had to "act a certain way" and look a "certain way"....I think one of the joys of my special needs child is that he doesn't buy into that - he is himself on all occassions - whether appropriate or not - he doesn't care if his clothes are "appropriate" for an occassion - or if his voice is not at the "acceptable" volume....or if it's not the right time to sing out loud or play guitar hero with his golf club - and though these special needs often make me want to apologize, explain & defend simultaneously - when I can find the peace of mind, on a rare occassion, I can find them refreshing & honest - often finding that my little guy is far better at being "himself" than most of those around me....including me.
as always thank you for your words - your autenticity. I truly find your posts honest, refreshing and for lack of a less cheesy word, inspiring. It's good for one to know they are not alone.
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