"We wouldn't change him for the world..." HECK YES we would.

“We wouldn’t change him for the world…”

I hear a lot of people saying this phrase pertaining to children/people in general with special needs. This post will most likely NOT make me very popular, but I gotta go ahead and disagree with this statement.

Don’t take this the wrong way…ALL lives matter. Just because you are in a wheelchair or nonverbal or deaf does not mean YOU do not matter. You DO. So let’s make that clear. What I’m saying is if the condition you are referring to is debilitating, as I believe autism is in Brody’s case, heck yes, I would want to change that…in a New York minute.

So for example…Brody cannot really speak yet. He says pop out words like “marshmallow” or “swing” or “yeah” and my favorite of all time, “Mom.” But he cannot carry on a normal convo with anyone. He has his iPad and his PECS book, which he rocks his augmentative communication devices, but he cannot, like, sit with you and talk about his day.

So, yesterday he came home from school in a foul mood. He was grumpy, sad and starving. So, I gave him his usual snack and he was still a mess. I held him and we played outside. He was still in a bad mood, and then started getting upset. I would, and I know he would, have loved to tell me what the heck was wrong. Maybe he had a tummy ache? Maybe he had a bad day at school? Maybe he hated his pants? Maybe he hated my pants? I had no idea. So, when your typical kid comes home from school and tells you about his/her day, that is a miracle to me. I go into shock daily when Destin proceeds to tell me all about his friends at school…

Destin: “Hey mom, Dominic made a dino in art today, it was cool..”

Me: “That is freakin’ AH-Mazing. REALLY????????! What the heck else happened?”

See…whoa. He can tell me what happened in a day!

(I am sure other parents think I am a Looney Tune in restaurants when I flip my sh*% as my oldest tells me all about Minecraft and legos…to me this communication is staggering.)

I’m getting off track here….

To say we “wouldn’t change Brody for the world" is an incorrect statement. I most certainly WOULD change his diagnosis for HIS benefit. I recently made this comment to another special needs parent and immediately got the cold shoulder,

“Why would you change him? Do you not accept your son the way he is? Don’t you think his life matters? Are you ashamed of him?”

Ummmm yes, I certainly DO accept him. I love him for who he is. All of us do, his dad, grandmas, siblings (Destin accepts everyone no questions asked, ALWAYS, I am so proud of him). So yes, he is accepted. And shame?…No way. How could you not be proud of our son? But that does not mean I wouldn’t want him to have the best opportunities in life. Being nonverbal has some limitations, let’s just be honest. No one will hire a nonverbal doctor or a teacher who elopes around the room. That is reality. And to make it in reality, and to be independent…well yeah I would change his disability and remove it. But are we accepting that he will live with us indefinitely? Yes...no denial there.

I do not want to change Brody’s personality or his sweet spirit. Never in a million years would I change who he is as a person. But if someone offered me a pill or offered me a deal like “if you give up your ability to speak your son is cured today” I would take the meds or become Helen Keller in a heartbeat. I would do some pretty crazy, effed-up things to see that Brody is happy, healthy and living life to its fullest. Like bat-shit crazy things like give up a limb or trade my organs for medications/cures or worse.

Brody cannot speak – I would change that.

Brody hits his own chin when he gets really, really mad – I would change that.

Brody has issues with sleeping and is up every morning before 6AM – I would change that.

Brody cannot go to movies…ever…or be around loud noises – I would change that.

Brody is beautiful, smart, special, affectionate, kind, and joyful – I would NEVER change any of that.

Perhaps when people refer to “we wouldn’t change him for the world” they are referring to higher functioning ASD kids? Sure…if you’re ASD diagnosis means your child is unique or obsessed with trains or bowling (as Destin was for like 3 years and his teachers thought he had autism, too…whole other post on that one!) or maybe that means your child is quirky and can play concert piano, but is otherwise pretty typical, then cool. Yeah. Don’t change him/her. But what if your kid injured him/herself? What if they were not toilet trained at 25? What if they could not walk at age 7? Some kids are in that very situation. Wouldn’t you WANT to change that? I would. Not to make them some cookie cutter person, but to HELP them. I am really talking about the lower functioning end of the ASD experience.

So if curing autism or giving Brody every opportunity in life makes me a bad mother than shame on me…haul me off to bad mommy jail.  

I would cure him if I could. If I could trade places with him, I would. TODAY.

But I can’t. As moms we want to fix everything and we want everything to be perfect for our children. But this is one problem that mommy cannot fix.

So, we do our best. We accept him and love him. And he will always have a safe place with us. And who is to say that Brody won't make a full recovery and become who I know he was meant to be...Channing Tatum.