What We Need

     I’m often looking for a quick explanation to give to people when they ask what it’s been like raising C. I realize it’s difficult for people to understand what other people’s lives are like, and I want to be able to share in a way that helps people understand both the challenges and the joy.

     I think having an autistic child, no matter where on the spectrum they fall, is like multiplying everything by 10. Much of what C does is hyped up in one direction or another. While I have been thankful not to have to attempt to figure out how to teach C to read, I would give just about anything to get him to eat a new food. Learning the states and their capitals? No problem. Blowing his nose? A zillion steps that have taken years to process.

     And skipping developmental steps, or going through them at different times than “normal” have also presented interesting challenges and non-challenges as well. While my friends were desperately child-proofing every single thing in their homes to protect their toddlers, C was busy working on sitting up. We never really had to worry about him hitting his head on the coffee table; by the time he decided he was ready to walk, he just stood up and walked. There was no toddler stage in our house.

     Not only are tasks often out of whack in terms of the ease or difficulty with which they are learned, but emotions are often very strong as well. While the tantrums and extreme distress are difficult for not only us, but for C as well, it’s tempered by the great and absolute joy he experiences over minute little details in life. New toothbrush? Tantrum. Getting an extra 5 minutes of computer time? Sheer giddiness. Outgrown shirt? Tears. New yellow shirt to round out his “closet rainbow?” Worthy of a press release.

     Husband and I often laugh at ourselves in wonderment at the fact that we would probably have no idea what to do with a “typical” child. And honestly, we consider that fact a bit of a badge of honor. Not that we deserve a pat on the back; rather that we are in some kind of cool, secret club. Sure, the dues can be high, but it’s worth every figurative penny.

     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.

     C’s milestones have all been met at times other than the general development schedules suggest they should be. Some way ahead, some way behind. This used to concern me, not so much because of the general comparisons that inevitably occur, but because there’s always a fine balance between progressing forward and standing still or going backward. For so many years we and his docs were worried he might have a progressive muscular disease of some sort, and we were constantly watching to make sure his developmental skills continued to progress. 

     His skills are extremely scattered, which has allowed for some truly entertaining and endearing moments, along with some that have been less so. At seven, he’s just now learning how to nod his head “yes” and shake it “no.” He simply can’t move his head independently of his body, and over time we’re watching the skill slowly develop to a point where less and less of his body is involved in the gesture. He’s also just gone through separation anxiety this year, evidenced by screaming, holding onto me for dear life, teachers prying his little body out of my arms (thank you, Mrs. R!) for the first few weeks of school. And we thought, after we passed years 2 and most of 3, that we had missed the “terrible twos” and temper tantrums. Boy, did we breathe a sigh of relief….that is, until 4 hit.

     But the most interesting awareness is happening in these recent days. I don’t think I can exactly call it a developmental step, but it is certainly something that generally happens before elementary school. C has discovered women’s breasts. That could spell trouble in the coming days. The other morning, while snuggling, he smushed one of mine and announced, “Mommy, you have a baby in your tummy!” Nevermind the real distance between my breasts and my belly, what that says about his learning body parts (another developmental step on the ladder), or perhaps what that says about my nearly 40 year old body. Once I made it past the chuckles about the baby comment, and got him past pushing on me 40 times to try and get the same reaction out of me, I talked to him about what breasts do, and how they are private to a woman and how they shouldn’t be touched by him. “Do the girls in my class have them?” “Does my teacher have them?” Uh-oh.

     I thought perhaps this was an isolated incident, and didn’t bring it up again, because to draw too much attention to anything means C will pick up on it and run with it to who knows where. But this afternoon, when Ga (grandma) was giving him a hug goodbye, and I saw him groping her, his hands firmly attached on both sides, squeezing and grinning, I knew we were doomed. He couldn’t just make it to summer, where the interest would safely pass (for a few years, anyway) outside the confines of school. I’m already drafting the note to his teacher and principal; Dear Ms. M and Mrs. M, C has discovered something special about women, and please know that we have discussed it and he knows he shouldn’t be touching women’s breasts, but I have to warn you that it might happen; please remember he is younger than his age and doesn’t yet understand the social rules that apply in this situation even though we are working on it at home. It’s not that I want you to ignore it if he does touch your breasts, but please don’t suspend him for sexual harrassment at age 7. Thank you.

     I’ve never felt like C’s diagnosis of autism was the end all diagnosis. In my mind, there’s more to the story. I remember when he was a baby, long before the word “autism” came into our lives, I used to sit up, late at night, putting different combinations of words into google. Thinking if I just came up with the right grouping of words I might find out what was going on with him, I’d pour through the latest neurologist’s report looking for keywords I might try. “Low set ears, wide nasal bridge, small feet, sensory issues.” “Failure to thrive, developmental delay, easy skin scarring, low muscle tone.” “Delayed speech, motor planning problems, food allergies, asthma.” As if I could put in the ingredients and out would pop the name of the dish.

     What came out of google were unpronounceable, horrible maladies no one should ever have to know about, let alone experience. Pictures of children who didn’t live past the age of one flooded my screen, and I cried as I read about syndromes and disorders I knew my child didn’t have. Yet the researcher in me wanted, needed answers, so I kept searching. I was never one who didn’t want to know; to me, knowledge is power, and I wanted someone, somewhere to be able to give us answers. 

     Of course no one could.  We have certainly closed in on many issues that are likely the explanation of all the things that have happened to him since his conception, of which autism is only a part. But now the google searches are done, the medical records are stored in a notebook that accompanies him to any doctor appointment but otherwise sits mostly closed, and I have a stack of development and autism books that sits unread on my bedside table. Yet what I know now, and have come to accept, is that we’ll probably never have an answer, because to have an answer, we’d have to have a reason, and I don’t think we’ll ever have that.