Making Sense of It All

I've been thinking a lot about Eli, and I just don't buy it.

Autism?

There's just no way. Maybe I'm in denial. Maybe everyone has seen this coming or thought, "Hmmmm.... there's something a little bit off with that kid." If so, please tell me. Because I just don't know what to think about it all.

Now, granted, I have been around kids before and thought to myself how obvious it is that they are on the spectrum - and how could their parents not know. So, I know it's not something you just go up and say to people, but I'm giving you free reign.

Here's the deal. If the only thing you know about autism is Noah, then you're going to think I'm nuts for even bringing any of this up.

And, truthfully, I should probably not even be blogging about it. But seeing that Sim is on a solo hiking trip to Big Bend this week without cell reception, I don't have anyone to talk to about this.

"Hey, I think something is neurologically wrong with your child and we need to do an in-depth evaluation... Oh, and he has a lot of symptoms that fall within an autism spectrum disorder...."

Well, think of this as my therapy. I can only imagine what would happen if I tried to keep my internal thoughts to myself...

Some of you may wish I kept all my internal thoughts to myself......

But then I wouldn't be me, would I? lol

I know it probably seems absolutely insane. And a few of you may be thinking, "Hmmm... I detect a little Munchausen Syndrome going on here."

If that's the case, may I politely suggest that YOU are the one who, in fact, is nuts.

There's a lot going on behind closed doors that people don't see. Kids can be extremely clever. And I think that's why it's hard to believe parents sometimes. You wish that people could be a fly on the wall and see what really goes on.

(Hats off to all you parents dealing with RADishes.))

And there is A LOT going on behind closed doors.

But autism???

It's funny that I'm aiming for a PPD-NOS diagnosis instead of high functioning autism. When Noah was first diagnosed, we could make fun of the parents who proudly said, "Well, my kid doesn't have autism, he just has PDD-NOS".... while that kid stood there flapping his hands so hard we thought he might take off at any moment.

5 years ago, it just seemed like a label doctors would give to parents to spare their feelings - when the truth was that the kid really did have full blown autism.

PDD - Physician Didn't Decide.

That's what we always said.

It actually stands for Pervasive Developmental Disorder, which is a an umbrella term for a group of developmental disorders:

Autism
Rett Syndrome
Childhood Disintegrative Disorder
Asperger's
PDD-NOS (Not otherwise specified)

PDD-NOS is basically reserved for kids who exhibit a lot of autism characteristics, but lack the one or two defining characteristics to give them Asperger's or Autism. In Eli's case, it's his socialness. The problem is that the gap between him and his peers is widening. So, since he already exhibits a few of the characteristics, and the social gap is getting broader... there's reason for concern.

Technically, most people in Eli's case would not get diagnosed until they are in 4th or 5th grade. That's when you see A LOT of Asperger's or PDD-NOS cases get diagnosed because the social gap is really evident then.

Eli, however, just happens to have a really astute mama.

Or a crazy paranoid mama, whichever you prefer.

But, seriously. Autism???

I don't know why it's getting to me so much. No matter what the results are from his upcoming exam, I know that Eli will definitely live independently, probably get married and have kids and be able to hold down a job. So, why am I even letting it bother me?

I guess it's because I took autism, and the diet, and biomed, and all the research, and all the therapies, and all the books, and all the countless nights staying up looking for answers, and I shut it all in a little door in my head, locked it, and threw away the key.

We finally came to a place of acceptance with Noah. He is who he is and that's how it's going to be.

And now this.

It was just overwhelming.

In a few days I'll feel a lot better. This is how I always deal with things. Cry, grieve a little bit and then throw myself headfirst into what I need to do.

It's amazing and humbling that God chose me to parent my kids. I mean, He blessed me with these kids - and He thinks I can handle it - and maybe do a good job of it. That's just so amazing to me.

Autism Schmautism. He's still our son.

Comments

C said…
Mac's first neurologist said, "Ya' know, she exhibits several things from a few different disorders. We could give her all those diagnoses, but what would that do for you? Instead, let's just treat what we see so you can move forward."

The best thing I could've heard, because her issues continue to wax and wane throughout her childhood.
Anonymous said…
Truthfully, I never ever would have thought that about Eli. I know I'm not around him much, but that has never ever crossed my mind about him. To me, he's very social. I mean, he invited me to Nandi's birthday party like three times the other day! =)

I agree with you on this: Autism Schmautism. He's still our son.
Michelle said…
Lots of prayers are being sent your way :)

Take Care
Michelle
CC said…
He is absolutely still your son and always will be. Labels are just ways of getting him some extra help. Or at least that's what I always say.
TracyC said…
This summer Gigi got a PDD-NOS diagnosis. It did not feel right to us, to her therapists, to anyone who knows her. We got a second opinion from a noted neurologist who said "no way", she's got a communication disorder and she did have a stroke before birth--that's what we and her therapist thought. Long story short--despite the labels--go with the mummy instinct. Sure, people will tell you "you're nuts" but so what? Hugs to you and your wonderful son!

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