Friday, September 13, 2013

I Think I Finally Get It

When you have not 1 but 2 kids on the autism spectrum, you will inevitably hear "do you think my son, daughter, grandchild, etc is autistic?"

Or, "well I think they have some sort of problem because of xyz..."

Sometimes they will tell me that they think their kid has some sort of "condition" that I have never heard of and I have to give them my "I think you are making that up" face.

In my head I am screaming "Why are you looking for a problem? do you want there to be a problem? don't you want a happy, normal child? what is wrong with you?"

I don't wish this life on anyone. It's not an easy one. It's the "climbing up hill both ways in the snow" kind of difficult, and I mourn the loss of the future I had planned for my baby boys.

Sometimes a sneeze is just a sneeze and sometimes, your kid is just ignoring you. They are kids. They do that. They are testing you. We all did it to our parents and now they get to sit back and laugh at us as we muddle through this thing called parenthood.

But I think I finally understand why people are looking for a problem. Why they are so hell bent on putting a name to what most people would refer to as brattiness.

Here's why.

2 weeks ago I was in a meeting with Alyson's 1st grade teacher. I knew she could hear the apprehension in my voice when she called and asked to meet. I went into the meeting very wary because, as we all know, it couldn't be good.

It wasn't.

Long story short, Aly is "off task" 58% of the time. With 1 on 1 teacher instruction, she is off task 52% of the time. This is more than half her education that she is losing.

The teacher tried to stress that she seems to have the skills, just not the focus.

I was told to see my pediatrician.

Unfortunately, this wasn't really a huge surprise to me. But I am really good as excusing her behavior as "mimicking the boys".

My pediatrician is amazing, but does not like to diagnose anything. (I get it, but it's frustrating)

We were referred to a neurologist and a psychologist due to our family history. (No one overlooks 2 autistic children in 1 family. No one.)

Well, neuro won't make an appointment without a diagnosis, so my pediatrician offered me a temporary diagnosis of "ADHD with autistic tendencies."

BOOM. That was a kick in the gut.

But here's the real issue...

What is a preferred resolution? You automatically think you want your kid to be ok and "normal", but think about it.

I can clearly handle autism. I can probably handle ADHD. But if my doc said she was fine and just acting out (or being a brat as I so lovingly put it) I draw a blank. I don't have any clue where to start with that.
Bribery? Sell her to the circus?

I wanted a name put to our problem so I could handle it. I wanted something to attack. When you have a name, you can work on a plan of action. What do I do if she is just acting out from lack of attention? (the real answer is curl into a ball and cry because you are a terrible mother that can't take proper care of ALL her children)

See, bridging the gap between typical and autism has always been where I struggle. How do you explain to a 6 year old that I have higher expectations of her because she is normal and her brothers are not?

How do I make her not hate me? Right around this time I saw a study that said 60% of all teen girls admitted to "sexting". So of course I automatically think "how do I help her know that I am not being hard on her?  that she will have to work harder than her brothers because she's normal? without her seeking love and attention from some pervy teenage boy and next thing you know there are naked pictures of her on every boy's phone and we have to move??" My mind goes there people. It just does.

We have an appointment on Monday morning which is some kind of record that I am pretty sure has to do with the fact that my 2 boys have been diagnosed. They started saying the appt would be in December, then magically, I skipped to the head of the cancellation list. I think I should get this one free since I paid for 2 already.

When the diagnosis comes in, I will do what I always do. I will hide in my room and cry for what I feel is an appropriate amount of time, then hopefully come out swinging.

I really needed her to be okay. As selfish as I know that sounds, I really needed 1 of my kids to be okay.


Kristal said...

I agree that the need to know helps you to tackle what is going on. We are getting my oldest daughter (with ADHD) evaluated for aspergers. Not that there is medicine for it, but it will help me understand her better and adjust my expectations of her. Good luck with Aly. I hope everything turns out all right.

Jenny said...

Hang in there, Mama. You're in our thoughts.

Audrey Crisp said...

I'm so sorry! How stressful! You are such a great mom. I hope it comes back better than expected and everything works out!!

margo johnson said...

Oh friend, that's too much. We should notify someone. ..TOO MUCH.
I want to apologize now for totally being THAT person, like you wanted to hear about every odd behavior of Emry. BUT, that being said, I'm so glad I did. You told me at another child's party we attended together. .. You would get her checked if it were you. I did. Autism. Thank you for going ahead of me and being honest enough to not say, she's fine, because yes, now I have some direction and help with raising this sweet child whom I thought I was failing at raising. Love you lady.