Breaking up is hard to do

     When I was in college, I pledged a sorority. I didn’t really want to, but my parents encouraged me with stories of how much their lives were enriched by Greek clubs while they were in college. The short version is that the hazing, something I have never really fully put behind me, changed my college experience entirely. The final straw for me, however, was talking to a pledge sister about the hazing, hoping we could change the experience for the next year’s pledges. “I can’t wait until next year,” she said, “when I can pass all of that hazing on and do it to the next group to come through.” That was it for me; I quit.

     The difference between C’s experience and mine is that my experience was voluntary on my part. C has had no such choice in how kids treat him. Yet recently, I discovered how quickly the tides can turn. C has “infiltrated,” for lack of a better word, a group of two boys and become the third in that group. I have watched this friendship develop with a certain amount of trepidation because of the tightness of the original two combined with an autism diagnosis for one of the boys. I suspect it was just as hard for “Andrew” to make friends as it has been for C, and I was concerned that in this situation, three might be more than a crowd.

     When C came home from school today saying that Andrew told C and ”Billy” that he wanted to “break up” with them, I was immediately on alert. C talked about how he, Billy, and Andrew were playing a game, and Billy started to tease Andrew a little bit. C apparently joined in the teasing against Andrew, and from his description of the event to me, I’d say it was with a certain amount of joy.

     Whether C relished the new-found feeling of being tight enough with someone that the two of them could be against a third, or if he’s just so happy to have a friend that he will follow whatever comes along I’m not sure. What amazes me, however, is how quickly this can happen. In a span of days, C went from being the odd one out to the one excluding another. I was nothing short of stunned, having never seen this type of behavior from C before.

     I suppose it feels so unusual for C to be on the giving instead of the receiving end that consideration of another’s feelings just flew out the window. It’s all harmless playground drama for most kids, but it’s exactly the kind of thing that has hurt C so much in the past. The irony of the fact that Andrew also has a special needs diagnosis is not lost on me. I’m hopeful C will quickly realize that being on either end of the teasing specturm is sad and make nice with Andrew once again. And in a world where three is almost always a crowd, two boys with autism and a third – who is also not your average joe kid – might make for more than one friendship group can survive.

Sometimes the sword beats the pen

     I write a lot about the playground and friends (most truly, here). Would that the playground equalled friends for my C, but alas, it rarely does. Whoever had the not so great idea to throw a bunch of kids into an unfacilitated situation with minimal supervision did not an autism child have. We tend to think that if we just put kids together, they will learn things; things like social skills and how to make a friend. It actually does work that way for most kids, but there’s always those special few who either learn something you didn’t intend for them to learn or they spend their free time wandering the fence line.

     Enter a great Mom. She got tired of watching her child with autism wander the fence line, sometimes playing near other children, but rarely actually playing with other children. She got tired of the tears in her eyes as she watched her child struggle with loneliness that only she could see, so she did something about it. (Does she sound like me? I wish. Read on.) She called in the experts, the fabulous folks at the local autism research and resource center and asked for help. They, in turn, developed the coolest, most real life functional program I’ve ever seen to help our kids thrive on the playground, and the data from the pilot programs is astounding. Using the simple formula of a well-intentioned playground aide or two, a quickly trained peer, and our target audience kids, interaction happens. Meaningful interaction. It seems so simple. It is so simple.

     I proposed that we incorporate this program into our district, and our district responded with an enthusiastic “yes.” So next week, a team of eight of us will attend a training in this program so that we can bring it to C’s 3rd grade playground. Eight lovely people who have kids like C in their hearts and minds. They understand how difficult making friends can be, and they are going to do their best to make sure these kids aren’t alone.

     Finally, it feels good to be doing something about this instead of just writing about it. I can’t wait to see it go live.

Wordless Wednesday

Best Friends

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.

Let me tell you ’bout the birds and the bees

     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.

Friends in new places

     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.

Cure-all

     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.

It’s all about your principals

     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.

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.