Be careful what you wish for

     C has a friend. A best friend. A boy who shares his fanatical interests in silly noises and Mario. They talk on the phone endlessly, trade houses for playdates, and send each other notes home in their school folders. I’m so happy I could cry. It’s wonderful, really, that C finally has a real friend, and when he talks, it’s all “T” all the time.

     Yet with this grand first friendship unfortunately comes a grand drawback. Before C came along, T was inseparable with “R” for many years. Now R is on the outs. Worse, R has an autism diagnosis. Worst, C has never excluded anyone from anything. Until now.

     C and T are doing the usual when three’s a crowd; they are ganging up against the third. Yes, you heard right, my own sweet special needs boy is participating in the unhappiness of another special needs child. It’s not all the time as there are times at school when the three interact nicely together, but R has clearly been replaced in T’s world. C doesn’t know R has autism, and C doesn’t know he himself has autism. What C knows, I believe, is that for the first time ever, he has a best friend, and it feels good. I can’t begrudge him that.

     I suppose most parents would either ignore the behavior or talk generally with their child about being kind to everyone, and the behavior would continue or it would not. Neither of those options work for me. Given my natural protectiveness of children with special needs, I’m not sure which is more painful to me: that this particular child is being hurt or that it’s my child who is partly responsible for the hurting. I simply can’t just ignore the behavior, no matter how much I’d like to say this behavior is a natural part of growing up. C has been on the receiving end of this kind of behavior far too much to simply let it go when it comes from him. And talking generally with C about being kind is never going to sink in to the point he realizes I’m talking about how he treats R.

     So I had to go for something more dramatic, something C would not confuse or only partially hear. I pretty much read him the riot act, complete with telling C he wouldn’t be allowed to play with T on the weekends anymore if the two of them couldn’t figure out a way to be kind to R. I reminded C that he too had been left out of groups and how upset he was by it.

     What I realized, unfortunately too late, is that this approach didn’t work either. It became painfully obvious, after a particularly unproductive, mostly one-sided conversation, that I had blown it completely. C had no real idea what I was talking about. I figured on some level he knew he was being unkind, but he really didn’t. It simply did not occur to C that R was hurt. And that is what broke my heart most of all.

Friendships anonymous

     I was reading a book the other day that weighed the pros and cons of integrated classrooms against self-contained classrooms for kids with an autism or Asperger’s diagnosis. The point that intrigued me the most (and one I hadn’t considered) was that in a self-contained classroom, remedial social skills training is part of the curriculum.

     C has never been a candidate for a self-contained classroom, but reading the book made me wonder why remedial social skills aren’t a part of the general curriculum for all children. Kindergarten certainly seems to be all about social skills, and while each teacher C has had since has done a wonderful job of creating community in the classroom, I watch those lessons not carry to the very places C struggles: the playground, the lunchroom, and standing in line. Truth be told? It’s the other kids’ response to C that bothers me the most. He may miss some social cues, but darned if he isn’t putting forth the effort. What happened to a grade of “A” for that?

     To argue that school is only about academics is crazy; studies show that pro-social skills in 3rd grade are a greater predictor of academic success in 8th grade than 3rd grade test scores. Yet it seems that the social skills training is mostly directed at the special needs kids. Friendship groups and social skills groups comprised only of kids with social skills challenges doesn’t teach our kids anything about interaction with their typical peers. 

     We’ve been fighting this issue of social skills groups for kids with autism at every school C has attended, and I’ve just never figured out why anyone would put a group of socially challenged kids in a room together and expect much success. I figure we can work on the academic stuff as it comes up, but the social skills are far more challenging to master. Yet it’s not just my child who needs training in this area. Quite frankly, I find many of his typical peers far more challenged in this area than C will ever be. I watched him compliment another child about his shirt recently, and I smiled at his earnestness and appropriateness in terms of timing, delivery, and tone. He probably shouldn’t have used the word “pretty” to describe the other boy’s shirt, but I figured he’d be forgiven the minimal error. When the other child merely grunted as a reply and turned away to talk to someone else, my heart broke just a little. Well, more than just a little.

     I wanted to put that other kid in a friendship skills group of his own. Where can I sign him up?

And so it begins

     On this morning of the first day of school, I find myself more anxious than usual about the new year. After one year of difficulties with boys, I thought it might be a fluke. After two years, I know it’s a pattern. So what will 3rd grade bring, and is there any way C can attend an all girls school?

     The elusive path to friendship with a peer boy eludes C. I worry that all the boys in his class will be gargantuan-sized athletic boys who understand the subtle ways to tease someone else and get away with it. I have visions of C sitting alone at the lunch table, trying not to cry into his rice milk. Will yet another year pass with the only party invitation being from the boy whose Mother makes him invite the whole class?    

     We’ve done everything we can to pave the way to a successful year. We explored the idea of holding him back to be with a “nicer” group of boys, but decided against it. I met with C’s new principal multiple times to ensure his placement with the teacher who would be the best match for him. I took C in to meet with said best-match-teacher (heretoforeveraftermore dubbed “Mrs. D”) last week, and, as per usual, he is smitten (so am I). It helps that Mrs. D resembles “Peach,” C’s favorite Mario character, and has dog pictures scattered around her room. 

     There is hope. C’s desk is next to a girl from his class last year who was delightfully kind to him. I’ve volunteered to be class Mom in the hopes that I can arrange some playdates with other kids. The new special education teacher seems to be a definite bright spot.

     I don’t want much. Just. One. Friend. Surely that’s not too much to ask.

The core of the matter

     There are always memorable comments made at C’s IEP meetings; comments that stick in my head for one reason or another. Usually, it’s because someone on his team has so beautifully captured something about him, and I hold the thought close to figure out what to do with it later. Long past the point of leaving an IEP meeting feeling as though my heart has been ripped from my chest and stomped on, I now feel as though the members of C’s team so closely grasp both his strengths and challenges that I find myself inspired to soldier on in shepherding this amazing child.  

     At C’s most recent IEP meeting it was the statement that C “has no core group of close friends” that stuck with me afterward. Friendly with most everyone, C seems to remain the friendliest kid in the world without any real friends. He’s definitely doing better - he has settled down and the kids seem to accept him more. Yet he continues to be, at his very center, alone. It struck me that this really is the crux of the issue for C. We can work around his handwriting challenges, and we’ll continue to address reading comprehension as the work becomes more difficult. It remains, however, that what none of us can seem to help him grasp is the very thing he needs the most.

Heartbreak

     As any parent with a special needs child will tell you, there are moments of extreme heartbreak. The moment when the specialist renders a diagnosis, or when you realize your child will struggle with something his whole life that other kids get in ten minutes, or when a school lets your child down. Yet often these moments come when you least expect them, and they are so swift and painful they take your breath away. Sometimes you don’t fully process them until later and you find yourself crying in the middle of the grocery store, reaching for your sunglasses and hoping you don’t see anyone you know.

     When I watched C wander around the playground this morning before school, aimlessly looking for a familiar face, something started to well up inside me. The time was only a brief five or ten minutes, but it felt like a lifetime. It’s not for lack of wanting to connect with someone; this child is about as social as they come. So I watched, while he walked around, anxiously looking for a friend to share his time. All the playground noise of the zillion kids running around faded from my ears as my chest swelled with a sob. There’s something so awful about watching your own child, whom you love so dearly and so completely, struggle with something so basic, so fundamental to his very existence.

     The moment became far bigger than it was, simply because it represents C’s challenges in the most profound way. He no longer approaches anyone and everyone with abandon, so he’s learned a lesson or two along the way. This is good and bad for the same reason: he’s more aware. Aware of some of the rules, yet aware he still doesn’t know exactly how the rules work. It’s a core issue of C’s version of autism.  

     The moment continued for me, while I later went about my day, sneaking up on me at inopportune times. Tears continued to drop here and there as I remembered his forlorn look as he milled about. Surely parents of “typical” children experience this at times, but I comforted myself by remembering that with the heartbreak comes moments (and there are more of these, truthfully) of extraordinary joy. Perhaps parents of special needs children experience the heartbreak and joy in more extreme ways, simply because there is nothing we can take for granted.

Big Deal

     C had a big moment the other day. No, I must correct that – a HUGE moment. Something came in the mail addressed to him, something I’ll probably save in the little pile I keep of huge moment momentos. It’s something I’d almost given up on ever happening, resigning myself to the fact that this moment might never arrive. Yet it did. With great fanfare.

     For the first time in his life, C has received a special kind of birthday party invitation. Not just any party, but one that takes place at Chuck E. Cheese, his favorite place on the planet. He doesn’t even know there’s pizza there as that’s completely off his radar screen – and he has no interest in eating it. It’s the games, the tokens, the tickets, the prizes, and being there with other kids he knows.

     Why so special? This is the first birthday party invitation he’s ever received simply because the birthday child really wants him there. It had nothing to do with the Moms being friends, or because the whole class was invited, or because the neighbors had to invite him so he doesn’t feel left out. This invitation, in all its glory, came simply from one little boy to another, from one friend to another, just because the friend wanted C at his party.

     That kid is going to get one rocking birthday present.

Tennis, anyone?

     C is full of enthusiasm. At a recent tennis class, he cheered and applauded every other child in the class whether they’d hit the ball or not. His objective was to hit the ball over the fence, and since he can’t even come close to that, he enjoyed everyone else’s ability to do it instead. “Great shot!” “Good grief, that was high!” “Holy cow!” He clapped, shouted, and jumped around excitedly as he awaited his turn to try to connect with the ball.

     The other parents watching took great delight in him, as adults generally do. The other children in the class looked at him like he was from another planet, averted their eyes and kept their distance. It was in that moment I decided perhaps C is how ALL children should be. Perhaps he has learned the lessons all of us try to teach our children; be supportive, engaged and caring. Applaud your friends’ efforts, good or bad. Take joy in their accomplishments. And most of all, cheer when they hit one over the fence.

It’s broke, so how do I fix it?

     If it ain’t broke, don’t fix it, but what if it is broke?    

    What do we do when the tools we give our children don’t work? I watched C playing ball with a group of boys the other day, and because he’s so much smaller than the other kids, he could rarely actually get to the ball fast enough. Whenever he did, another boy always wrestled it away from him. He used all the scripts we’ve given him about sharing and asking for his turn, but nothing worked. He ended up in tears on several occasions and I ended up facilitating a sharing game with the group of boys.

     I always come away from these situations frustrated with our interventions, therapies, and parents who don’t instill kindness in their children. I know boys will be boys, and I also know these boys aren’t mean kids, but when one child is the only one being singled out again and again, it crosses a line for me. I encourage C to find something else to do when he’s presented with kids who don’t follow the rules of being nice, but this is largely unsatisfying to him as he so desperately wants to participate. As adults we are able to recognize that if we’re playing with someone who is not being nice, we don’t have to play with that person anymore.

More on acceptance, or is it denial?

        I hate birthday parties. They generally are everything C struggles with combined into one event. Eating, waiting (for someone else to open presents), unstructured play, social situations, noise, groups of boys, and mean kids. Navigating the birthday party waters is fraught with potential disasters, most of which occurred today.

     The problem is, C loves everyone. No matter the wrong done to him, everyone is a friend. I love that about him. What I don’t like about it is the future I see for him – being picked on relentlessly. I watched today as a group of boys played a game of tag, and no one was ever “it” except for C. For anyone watching, it looked like he was fully participating in the group; what was really going on was a very subtle form of bullying. He had a blast for awhile, and then he wandered off to play alone.

      The disconnect for me is that I keep thinking because he is so kind-hearted and friendly, kids will want to be his friend despite his idiosyncracies. What I realized is he’s never going to fit into their world. You’d think I was new to his diagnosis, because every time I realize this fact, it hits me like a ton of bricks. It’s not about some desire of mine for him to be popular – I just want him to have friends, so I try to teach him the necessary skills. It’s what he wants. I’m following his lead, and I never want to give up for him or on him. 

     I had an epiphany today, and it wasn’t a particularly pleasant one. I realized my child has autism. I know this in my head, but for my heart it’s always a surprise when it remembers. For all that carries with it, whatever interesting and wonderful things come out of it, it breaks my heart that what he wants the most is probably the one thing that will never come easily to him.