(this is a reprint of a post I wrote in May, but I wanted to say it all again after reading my new issue of People. It is, probably, my favorite post that I have ever written, and is for sure the most honest.)
No parent ever wants to hear that something is wrong with their child; that their offspring is not completely perfect.
Realizing the magnitude of being entrusted to care for, nurture, raise and eventually let go of a new life is both mindboggling and awe-inspiring as well as terrifying. Before my first was born, I could barely be considered responsible to care for an aquarium, and rightly so: I was just 20.
Having had no experience with babies, I had no idea that mine was abnormal. He hated human touch, he preferred to watch his mobile spin around to looking at faces. His first word was not ‘œMama’ or ‘œDada’ or even ‘œBaba:’ it was ‘œtock-tock.’ His phrase for ‘œtick-tock’ referring to the grandfather clock in the hallway which he adored. I’d be lying if I claimed that I wasn’t devestated by his total lack of interest in me and his distain for my touch, but I assumed that this was just the way he was. Different strokes for different folks and all that happy horseshit.
Shortly after his first birthday, he was introduced to the planets through a Baby Einstein video. Before he could recognize emotions, he knew 4 of the moons of Jupiter and could identify them from different angles. *I* couldn’t even do that. Rather than wanting to read Goodnight Moon, I took him to Borders and he picked out an encyclopedia of the solar system intended for adults, which he memorized cover to cover. He could spend hours at the Planetarium but screamed bloody murder at the zoo. I’d come home from class to several different ‘œsolar systems’ he’d created out of balls, each true to form. His depth of knowledge was amazing and freakish and I have no real way to illustrate that to you here.
This was all before his second birthday.
I had realized, of course, that he wasn’t speaking as much as What To Expect During The First Year said that he should, but considering the authors militant stand about their stupid pregnancy diet in their stupid pregnancy book, I wasn’t too worried. I just assumed that he was developing at a different rate than others his age. I mean, what 17 month old can tell you what Pluto’s moon is? (mine could). I had also figured that no one had really encouraged his speaking abilities, being the only child/grandchild, we all spoke for him.
At his 2 year check-up, his regular ped was out and his partner told me in no uncertain terms that not only could he not understand him, but that he would be writing a referral out for an evaluation from Early Interventions. I left that appointment not only upset with the manner in which the doctor had spoken to me (‘How dare he talk to me like that?’) but by the fact that I hadn’t even thought anything was wrong.
Several times, different evaluators came out to our house to observe him and speak with me about his behaviors. Many of the questions provoked lightbulbs in my head, a ‘œso THAT’S why he does _____! (only eats 3 things, becomes so overwhelmed by touch that he screams inconsolably, lines up his toys by color on the stairs, has an insane facination with spinning things, knows WAAAAAYYY too much about the solar system, flaps his arms whenever he’s excited)’ which really only made me feel worse about the things I had never noticed, or had noticed but considered quirks.
I drew the line at recieving a formal medical diagnosis however, because as a nurse and the daughter of a mentally ill mother, I am completely aware how these things follow you for the rest of your life until you can only define yourself by them. Does that make sense to you? Let me give you an example: I (myself here) am dyslexic, have Crohn’s disease, and have a latex/iodine/shellfish allergy. But does that make me who I am? Not one bit, but not only do I catch myself excusing away things based on this, it has become a teeny tiny but integral part of my self image. And I do not have any behavioral problems to excuse away (i.e. ‘œI’ll never be able to sit still because I have ADD, therfore I won’t even try.’)
Without a totally formal diagnosis, he was explained to be on the autistic spectrum and speech and occupational therapies began immediately. For almost two years, he recieved both therapies and began to make strides toward more normal behavior. He began to speak more frequently and clearly in addition to being able to deal with more and more textures, consistencies, and tastes. His more interesting quirks remain to this day, thankfully, as they are part of what makes him who he is.
My soon to be husband and I enrolled him into private school when he turned three to enrich his social skills, as he had no children his own age to play with at home. I’m not sure that these social skills will ever be what is considered totally normal, but they have improved by leaps and bounds, possibly to the point that an innocent bystander would not realize how much he had once struggled to do something as simple as recognize basic emotions.
I have still struggled through numerous thoughtless comments from both parents and non-parents alike (‘why won’t he eat anything but junk food?’) who have somehow gotten it in their head that his problems are little more than an issue of bad parenting. I have suffered through years of guilt and regret (had *I* done something to cause this?) I have spent cold meal after cold meal coaxing him to eat something that looks different or *is* different. I continue to worry about what his life will be like as he grows older and begins to interact more with the general population: will they be gentle and understanding of his uniqueness or will they tease and mock him mercilessly? Have we done enough to prepare him for the world? I have spent hours upon hours reassuring him that completing a ritual out of order was just fine, and comforting him from afar while wanting nothing more than to sweep him in my arms and kiss his tears away.
I have had to accept that my child is not perfect.
Is this the worst thing that could happen to a mother? Certainly not; he’s happy, he’s healthy, and above all else he is loved unconditionally. Having seen babies born without brains and hearing them cry (possibly the worst sound in the world. It’s loud and atonal), I am aware that I got off pretty easy here. But competing in the Pain Olympics isn’t why I wrote this post.
As you all know, I am not one to use this blog as a politcal forum, nor am I likely to spend time talking about my feelings here, or elsewhere. But I came across this website where you can help kids with autism. Is it real? I think so. If not, well, the song is kind of cute anyway. Either way, this band has supposedly pledged to donate $0.49 for every time this video is watched. It can’t hurt, it can only help.
We all have hopes for our children. As for me, I just hope that he knows how much I have loved him.