Saturday, April 18, 2009

Our story part 4: Cuddlebug & Bearhug's Diagnosis

I scheduled two separate appointments with the pediatric neurologist. Cuddlebug was up first, as he seemed to have more significant delays. The doctor asked a ton of questions, and then started trying to talk to Cuddlebug. I was used to “translating” (or at least trying to) so it was hard for me to stay quiet and just let him interact with Cuddlebug. For a while Cuddlebug just ignored him, but then he brought out a Spiderman finger puppet. Cuddlebug knew nothing about Spiderman, but he was intrigued by the finger puppet. I remember the doctor asking him, “do you like Spiderman?” over and over. At first Cuddlebug just smiled, then he repeated back “Spi-mah.”

A bit confused at where this was going, I finally told the doctor, “that means ‘yes.’” He asked me, “does he ever actually answer yes / no questions?” After thinking about it, I realized that he didn’t. In the absence of actual yes/no answers, we had just taken his smiles and echoing what we said as an affirmative response (and his ignoring us as a negative response). We hadn’t even realized we were doing that, or that his repeating things back could be just repeating. Suddenly, some of his meltdowns started to make sense (for example, when we’d ask, “do you want milk or juice?” “Juice.” So we’d get him juice and he’d drop to the floor screaming because it’s not what he wanted.)

The doctor continued evaluating him, and taking notes. Finally he told me he thought Cuddlebug had autism. After all our research, I wasn’t surprised, but it still seemed strange to hear someone actually say it. He referred us to a developmental pediatrician who specialized in autism, and gave me referrals to have him evaluated for speech and occupational therapy. He also referred us to our school district to have him evaluated for special needs preschool services (having just turned 3, both of our boys were too old for early intervention services). He also scheduled a blood test (to check for Fragile X or any other issues that could be identified that way) and an EEG (to check for seizures). Having to hold him down to take blood was not fun. The EEG was a nightmare. There was supposed to be two parts – one awake and one with him resting or, preferably, sleeping, but he never settled down enough to do the “resting” one. Both the blood work and the EEG results came back “normal.”

Bearhug’s appointment was similar, although the doctor noted that his symptoms were milder and that he was “more interactive” that his brother. True enough, although we would later come to realize that while his classic autism symptoms were less severe, his sensory issues were more severe than his brother’s.

We found out that there were waiting lists for everything, and more evaluations required for everything too. For speech, they needed a hearing test before they could even be evaluated, so we scheduled that. Another day of mayhem… Cuddlebug wasn’t particularly cooperative but Bearhug went absolutely ballistic when we tried to get him into the little booth where they do part of the hearing test. They both loved running up and down the little ramp that led to the booth though (sigh).

It took several months, but we finally got them in for speech and OT evaluations, and for evaluations with the school district.

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Meg on April 18, 2009 at 11:05 AM said...

I've been reading these installments faithfully, but they're almost too much. They are so similar to our story (minus one kid), right down to the denial, that the words are painful.

Good for you, for pursuing what you knew in your heart needed to be done. And thank you for sharing your story with us.

lonestar on April 21, 2009 at 8:46 AM said...

Meg - Thanks, to be honest it's been a little painful to write (reliving it as I remember it) but it's also been therapeutic to get it all down on "paper."

It's amazing the similarities I see in my own story and that of other families too! Nice to know we're not alone.


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I'm a mom of three boys on the autism spectrum, 11-yr-old identical twins and a 7-yr-old. My husband is a SAHD.


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