A family's story

Roller Coaster

I’m sitting in the waiting room at the Neuroscience center. Hubz and I have finished our parent interview for Jake’s evaluation. I have a pit in my stomach. I am uneasy. I feel like having a flight or fight reaction, and quite honestly, I’m not sure which one is going to win.

The neuropsych sends her intern to ask Hubz and me if we had Tate genetically tested. I let her know we didn’t. The geneticist said Tate didn’t have any physical markers of genetic disorders, and honestly, we decided to hold off. We were also asked if he saw a neurologist about possible seizures. That we did…we did a regular EEG and the sucky 48-hour EEG. Both showed no abnormal activity.

A little time passes. Hubz leaves to get me coffee. The intern reappears. Based on your answers in the interview, family history, and Jake’s performance in the testing, we want to ask more questions focused on the Autism Spectrum. Can you come back with me?? My heart sinks. My stomach flips. Sure…no problem. I’m choosing fight…for my kids.

I sit in the doctor’s office. I answer her questions.
Yes, he struggles with eye-contact.
No, he doesn’t have flat affect or inappropriate reactions.
Yes, he flaps and has some strange movements.
No, he doesn’t get obsessed with small moving parts.
Yes, he approaches peers and is interested in them.
Yes, he initiates conversation….but, but he struggles to sustain it. If he is confronted with a topic he knows nothing about, he steers conversation to his interests.
No, he doesn’t have echolalia.
Yes, he uses some scripts.
Yes, he shows joint attention.

I’m handed a form and am asked to fill it out. I remember this from our visit with Tate. It’s a screener for ASD. The doctor tells me she’s going to administer the ADOS to Jake. I sign consent. I’m lead to the waiting room. I sigh.

I finish filling out the form and hand it to the receptionist. Hubz comes in with my Chai Latte. I tell him the latest. He says he’s not surprised…we both look straight ahead and sigh.

This waiting….this evaluation process…it is hard on all of us. But, we do what we need to do. Now that we are sitting here waiting…my head spins…what if Jake is on the spectrum? What if it’s just ADHD? What if…what if…

To be continued….

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Comments on: "Roller Coaster" (6)

  1. You’re tough and you’ll get through this. You’re not alone. Let us know how it goes.

  2. o, hugs, I hope your wait for your answers is short.

  3. I had to read this whole post again. Jake sounds A LOT like my Ace. Ace was diagnosed with ADHD a couple of months ago but I’m not convinced that he got the correct diagnosis. We have another appt scheduled for early Nov to re-evaluate. Please let me know how yours goes.

  4. So not alone. You know that. Here when you want to talk.

  5. First off, hugs. You are a great FIGHT mama! You can do this.

    Your list sounds a lot like Little Miss. We thought it was ADHD. Or OCD. Or something… anything else. We were so surprised. Sigh.

    But you’ve done this once. You CAN do this. And you are not alone.

    Hang in there, OK?

  6. Remember, above all else, Jake is still Jake. He is smart, funny, loyal, strong and loving, just like you. A label will just give him more help, more strength. And if no label, he will still be who he is. Lead with your head now and give in to your emotions later. And know that every one of us is with you holding your hand and providing you with understanding and support. xo

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