What We Need

     C is very simple. It’s quite complicated really, but in essence, he is very simple. Everyone is a potential friend, and he rarely holds anything against anyone. Just this morning, he said hi to a little girl in his class (the one who used to call here all the time but doesn’t anymore, see here) as we walked onto the playground. He says hi to her every day. She never says anything back, but instead runs away giggling with her friends. I realized he has been caught up in something he doesn’t yet understand.

     This little girl’s actions really bother me. It seems to me to be too young to have this silly kind of interaction. Momma Bear that I am, I went to talk to her in line and asked her how she’s doing, and did she hear C saying hi to her this morning? I knew she’d be blunt in her response, and she said something about not wanting to be C’s girlfriend all the time. My response about just being friends with everyone, boy or girl, I’m pretty sure fell on deaf ears. Or perhaps just 7 year old girl ears.

     As I marveled at the sophisticated, albeit annoying, antics of children these days, I started to feel old. Really old. I am pretty sure I was oblivious to all of that until much later. Perhaps it is my memories that are oblivious, but I don’t remember talking about “cooties” until far later than these years. Just like C doesn’t seem to see skin color or weight differences or anything else (he thinks I look like his new gym teacher, who is about 8 inches shorter and has a completely different color hair, but it’s LONG, so there’s his connection), he certainly knows nothing about the complicated world that is boy-girl relationships.

     We talked as we walked in about how good friends treat each other, and he said that perhaps this little girl is shy. I smiled, because she is anything but shy, but loved that C was trying to figure out a reason without holding it against her in any way. I’m not sure what will happen down the road, but for the moment he seemed happy to let it all go.

     As I walked away from the school, I was reminded of kindergarten last year, in a very different school, in a very different town, where all the girls had to be reminded to put their cell phones away before class started. They talked about their Christmas vacations in Paris and I felt the sharp contrast between their worldliness and C’s, and wondered if he would ever find his place among these children. I guess kids just grow up faster these days.

     C’s innocence is part of his charm, and once again I counted my lucky stars to have this child, this boy as my own.

     It is amazing how your circle of friends change when you have kids. You find yourself bonding with people you might never have known if it weren’t for your kids’ connection to them. Having a child who is “special” has brought me all kinds of friends I might have never met otherwise. Friends who have become integral parts of our lives simply because of our shared experiences, even if they aren’t the same experiences. These are the kinds of friends you don’t have to explain anything to if your child has a 2 hour temper tantrum at their house or can’t eat anything in their kitchen because he’s allergic to everything. These are the best kinds of friends, even if the only thing you have in common is your kids.

     For a long time I completely surrounded myself with these friends in a protective cocoon. I couldn’t be around people whose kids were developing “typically” because their lives were so different than ours, and it hurt. We were so worried about our child and had no idea what was happening with him. It seemed like the whole world of parents I used to know took everything their child did for granted while we were teaching C how to swallow food. Not true, I know, but it felt that way.

     Even though I have made it back to the world where one has friends simply for friendship’s sake, those somehow connected to the world of special needs remain the best. There’s just something about being around people who have an understanding of what is happening in your family that is both empowering and relaxing at the same time. Autism can at times make for strange bedfellows, but I’m thankful it has brought us some dear friends.

     As my boy wandered around on the playground this morning, somewhat idly, he had a grin on his face. Anyone looking at him would think he was happy. But I, as a somewhat skilled interpreter of his language, saw a different picture. He watched the boys and some girls playing basketball, probably knowing the game was too fast for him. He said “hi” to a couple of kids in his class, but didn’t connect with anyone in particular. He was grinning in that slightly uncomfortable way one grins when they don’t know what else to do with themselves. He went up and down the slide a few times, enjoying it, but I’m sure knowing it would’ve been far more fun if he could share the experience with someone else. And I just wanted to cry. I still want to cry. I do cry.

     I know some people think I worry too much about this child who appears so happy and well-adjusted. Most of our days at home pass with relative calm; we’ve become so used to the way our family functions that we don’t notice how “different” we are. C doesn’t struggle in an obvious way at school, and to all who see him, he seems like he’s doing really well. He is in fact doing really well, and he likes his school. 

     Yet there’s more to the picture; there were tears last night. Big, fat, alligator tears about a hole in his sock that were probably about more than the hole in his sock. There’s crying every Sunday night about not wanting the weekend to be over, which probably has as much to do with Daddy going back to work as it does with C going back to school. There’s constant distress over why a certain friend, his “best” friend, doesn’t ever invite him over when we’ve had that friend over numerous times. He so desperately wants to have friends, lots of friends. He does have a number of surface friendships, but nothing outside of school would happen if I didn’t initiate it. No one is running home begging to do something with C. He is painfully aware of this fact, and doesn’t understand why.

     I so worry about this sweet, sensitive child who seems to mask his worries and stress. I want his path to be easier, and not because I want to shelter him from learning tough lessons, but because I worry he will be so terribly damaged on his journey. I see tiny, subtle little clues that he is struggling far more than any of us realize, and I wonder what that means for him down the road. 

     I realized this morning, as I did my morning errands and chores after dropping him at school, that I want things to be different for him. I want a cure. But not for him. For the rest of the world.

     C attended two different kindergartens, because the first one we tried was so terrible. There was a little girl in his class who had Wilson’s Syndrome, which is an autism-like genetic illness that has at its base a high copper content in the body. I went in for lunch a number of times and sat with the kindergartners outside. Several of the kids were making fun of this little girl behind her back and saying very sophisticated and horrible things about her. Frankly, I wasn’t exactly sure what I was supposed to do or say given it was a Montessori school whose main tenet seemed to be that adults weren’t supposed to get involved in much of anything.

     I later brought up the incident with the principal, while attempting to explain to him my concern about C’s future and his complete lack of friends in his class. Mr. M’s response was that this little girl often hit other kids and that explained why the kids didn’t like her and therefore made fun of her. It seemed completely okay with him that she was the brunt of vicious comments. This wasn’t my first clue that Mr. M was not the kind of person I held much respect for, but it was one of the most telling. It broke my heart that his answer to the problem was to blame the little girl instead of working with her aide to make sure the incidents lessened as well as perhaps helping the other children understand why she often lashed out.

     The most damning moment for Mr. M, however, was the day after a particularly unpleasant IEP meeting. My emotions were raw as were my eyes from crying, and as I tried to get out of the school after dropping C off with a minimum of interaction with anyone, Mr. M called me into his office. As he was yelling at me, with door open, teachers, parents and students wandering in and out, he made a comment I will never forget. “I don’t care if C has any friends,” he screamed. “That is not my problem!”

     This, from an elementary school principal. I understand it’s not in a principal’s job description to help children have friends, but that comment brought on a light bulb moment for me. We pulled C from that school right in the middle of the year and never looked back.

        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.