Tested

It’s a crazy thing when people ask, “How is Aislin doing?”

What do you say? How do you say it? Do you say the truth? Do you just say, “Fine.”

What is fine?

There are a couple things that have happened since my last blog.

Well, first and foremost, testing came back. We had microarray, Fragile X, and Metabolic testing completed. Drum roll, please…. All came back normal. Now what? After speaking in depth with A’s genetic councilor, I have decided to press on for more testing.

Yes, I may be that overly paranoid mother. I may be taking it too far. Hell, I may be psychotic. But one thing is for sure… I want to know how to help my kid.

I am one of those people who wants to cancel out everything that we do know. We do know that some chromosomes can affect a child and make them regress. We also know that even if they do find a messed up chromosome or lack of, that it may not mean shit.

I have chosen to just get it done with. I don’t want the answer but I certainly won’t be able to live with myself if I don’t know. It’s an ugly double-edged sword.

This week and a half has been tough, I am not going to lie. I don’t know if it is the full moon or whatever it is but usually once or twice a month I break down. Yes, I break down into the “Ugly Cry.”

It’s so hard to look at your child and not know what it is you can help them with. It’s extremely hard trying to show them something and they just do not understand and they don’t have the skills required to do said task. It’s hard to play with a typically developing child that is the same age and you question to yourself, “Is this 2 year old a teenager? How is she coloring and speaking to me? How is she already using a potty? Whoa, she just sang her ABC’s!”

I am not saying my child isn’t bright.  I am not saying she doesn’t do things that baffle me even if they are the smallest of things. It is just DIFFERENT.

So two weeks ago we went to Get Air. It’s a trampoline place for kids and they have a section for children under 46″. A has been jumping on our couches lately so we figured this would be the perfect place. My husband and I brought her and… she had a BLAST! She walked on the trampoline, jumped, played with a ball, went into a foam pit… It was as if we just had the best “normal” day ever.

Skip to the following Sunday. My husband had to work and I wanted to get out of the house. Get Air was the first thing that popped into my head. I got A dressed and was super excited to show her where we were going. We get there and get our bracelets… and there is crying. Ok. No big deal. She’s a kid. She’ll warm up to it. Get her over to the trampolines and… She shutdown completely. I have never seen this happen with her. She literally just shutdown. She stood there for almost a hour with her head down as if she were paralyzed. I wanted to cry.

You see, there is no rationalizing with her. There is no questioning what is wrong. “Are you scared? Tired? Sick?” You just never know. She can’t physically tell me.

After about 50 minutes of trying everything I could, we left. I felt like I had failed her in some way.  I freaked out and thought to myself is she ok? Is there something weird going on? Do I need to bring her to a doctor? What the fuck do I do?

And I know this sounds like I am overreacting and I probably was. But it is so incredibly hard not knowing why behaviors happen.

Then I remembered something. Always have a Plan B. Always.

The thing is with these kids, they may like something one moment and the next it may be too much stimulation. Always have a backup plan.

So to get back to my original thought, “How is Aislin doing?”

The very best that SHE can.

 

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