Don’t Go Changing

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.

different maya angelou

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.

born to stand out suess

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.

normal is boring

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.

The Importance Of Being Anonymous

As you can probably guess by reading just a few of my blog posts, I really cherish my anonymity. I refer to myself as “The Fairly Good Mother,” to my husband as “The Husband” and my son as “The Boy.”  One of my chief concerns, (and The Husband’s concern as well,) when starting my blog last month was protecting the privacy of myself & my family.

This the internet, where nothing can be erased, and your words might haunt you later on down the line.  All I can say is THANK GOODNESS that they didn’t have social media & blogs when I was in my 20’s!  Even though I do speak my mind, I’m fully aware of who I’m dragging into my opinions & their impact on my private life.  And I know that our opinions and beliefs change over time, but some things you can’t take back.

When I read stories like MaryAnn Sahoury’s, I realize that nothing is private on the interwebs, and that things can be stolen and manipulated by selfish, evil people who don’t care about anyone else’s reputation.  She did something kind to help other mothers who were experiencing difficulty breastfeeding their child, but it was turned into porn & now her reputation & her child’s reputation will be forever marred.  And that’s just one story … There are countless others.

Since The Boy has been diagnosed with Aspergers, and our hope is that we can correct a lot of, (if not all of,) the negative behaviors and he can become the poster boy for “the cure,” I never want this blog to come back and smack him in the face as something to be held against him.  The stories of potty training & silliness are harmless.  But in this day and age of Super Bullies, I don’t want to give them ammunition with which to eviscerate My Boy.  And by making him anonymous, I feel like I’m protecting him, even if only a little.

Though I do have many friends – some have children with special needs, and some with “typical” children – who write blogs and are comfortable posting their pictures & their names for all the public to see.  I’m not in any way judging them, or saying that they’re wrong, but that isn’t something I’m personally comfortable with. Like everything else in life, it’s a personal preference & I don’t begrudge anyone that.  I only caution parents to think twice about what you post and how much you post, and the impact that it might have on your child(ren.)

I suppose it’s a blessing in disguise that I never achieved true “fame & fortune” as an actress.  I really wouldn’t have been comfortable with the public scrutiny & the loss of my anonymity.  I never knew that until I “grew up.”  Don’t get me wrong, I love being the center of attention & I’m as social as they come, but I don’t like the crazies knowing my address.

I think about the whole back and forth battle that ensued between two mommy bloggers recently over something one of them posted about Adam Lanza & how she could have been his mother, because she has her own troubled adolescent son, whom she claims has Aspergers.  (I’m not naming names because I don’t want to give them that kind of publicity.) Then the other mom dug around on her blog & discovered that she might be lying – that seemingly her son didn’t have any mental issues or neurological disorders (that were written about,) and rather than writing about her children affectionately, she skewered them in her blog, often writing about how she wanted to throttle them & how terrible their behavior was & what anguish it had caused her.

I’m not saying that we shouldn’t be honest or humorous in our desire to connect with other mothers, but I offer a caution to other mommy bloggers … just remember, as much as you’d like to treat the internet as your diary & write down everything, just remember, it’s not paper & cannot be torn from the book & burned.  (Yes, I’ve done that with my real life diaries.)  If you don’t want it coming back to haunt you, or your family, take it to the grave, or tell it to a friend in a closed chat room / facebook group / over wine / in a phone call.