Coming to terms with being the mom of an Aspie has been a journey. Of course, I went through the gamut of emotions since we got the diagnosis 8 months ago: denial, anger, sadness, frustration, hope, acceptance. True acceptance was a long time coming. I accepted it earlier on, because I had no choice, but secretly in the back of my mind hoped that they were wrong, that he would outgrow it, (and he still can outgrow some – if not all – of the behaviors.) And because I had hoped he would outgrow it, I haven’t told more than a handful of close friends & family (not even all of our family knows,) about The Boy’s diagnosis. Not because I’m ashamed, but rather because a) I’m not sure that it’s my place to say anything, it’s HIS life, HIS diagnosis – he can tell whomever he wants to when he is old enough; and b) because I’m not sure I want to delve into a lengthy discussion about what Aspergers is, or how they came to that conclusion; and c) I really don’t want to hear more people tell me “no, there’s no way he’s on the spectrum, everything you are telling me sounds like normal 3-year-old behavior. He seems fine & normal to me.” YES! He is FINE & he is “normal.” Whatever normal is … Personally, normal seems pretty boring. And I’m not interested in defending his diagnosis, or explaining to people what it is & why.
But I finally told our regular babysitter, (complete with printouts, lol,) because I thought, as his caregiver, she had a right to know, (even though she only babysits like once a month or once every other month.) And I have been more open with telling strangers when it is in the best interest of The Boy. For example, when we were at the shoe store the other day & there was only one clerk in the store. She was busy helping another family & told us 3 times in 5 minutes that she would “be right with us.” The Boy has trouble with waiting & wasn’t even remotely interested in shoe shopping, (he was yelling “nooooo”) so I had to be swift with my approach. Getting him interested in Spiderman shoes did the trick, now getting him to take off his shoes was another feat, but I did it. Five minutes goes by & she starts in with another “i’ll be right with you.” That’s when I abruptly interrupt her & politely inform both the clerk & the family that The Boy has Aspergers & gets antsy quickly, and if she can just measure his foot so we know what size he is, then she can continue helping the family out while my mom & I try and keep The Boy entertained, (we let him try on cookie monster clogs.) I’m his advocate, I’m his mother, so I know what he needs & I am not afraid to ask for it – nay, demand it – if need be.
When The Boy was a baby, The Husband would sing Billy Joel’s song “Just The Way You Are” when he was changing his diaper – specifically, he would sing, “don’t go changing …” The Husband was being cute, but 3 years later, thinking about those innocent moments & reciting the lyrics brings tears to my eyes. I never want The Boy to change. I don’t hate Aspergers, I don’t hate that he has it … I love him, and I love that he has Aspergers because if he didn’t, he wouldn’t be who he is; he wouldn’t be The Boy that I love so much. I love the way his mind works, even though I may not always understand how his mind works, I love the way it works. And I love trying to understand him & figure him out. So please don’t ever think for a minute, dear reader, that I feel sorry for him or sad about his diagnosis. My Boy is going to do great things in this world. Just you watch.
The only thing that makes me a little worried is the way other children regard him. Kids are mean. I’ve already witnessed kids shunning him when he gets too close to their faces and speaks in jibberish or goes off on a non-sequitor. I wish more parents would teach their children about acceptance. I wish more parents would educate their kids about being kind to other people even if they are different, look different, speak different, act different, play different. DIfferent isn’t bad or evil. Different is awesome. Different is what makes our world beautiful. Different is what creates new inventions, amazing books, gorgeous works of art, new trends, new ways of thinking. Different is OK.
And just because I love them, here are the lyrics to “Just The Way You Are” by Billy Joel:
Don’t go changing, to try and please me
You never let me down before
Don’t imagine you’re too familiar
And I don’t see you anymore
I wouldn’t leave you in times of trouble
We never could have come this far
I took the good times, I’ll take the bad times
I’ll take you just the way you are
Don’t go trying some new fashion
Don’t change the color of your hair
You always have my unspoken passion
Although I might not seem to care
I don’t want clever conversation
I never want to work that hard
I just want someone that I can talk to
I want you just the way you are.
I need to know that you will always be
The same old someone that I knew
What will it take till you believe in me
The way that I believe in you.
I said I love you and that’s forever
And this I promise from the heart
I could not love you any better
I love you just the way you are.