Wednesday, April 15, 2009

Our story part 3: The final straw

During the time leading up to their third birthday, dh and I became more and more frustrated and confused by Cuddlebug and Bearhug’s behavior, increasingly unusual responses to things, and continued lack of communication. Every now and then things would get so bad that we’d have “the talk” again. The one where we tried to put our concerns into words, shared our confusion at “why don’t we see other kids acting like this?” and dared to wonder aloud whether something was wrong. Of course we didn’t want to believe that, and typically after one of these conversations, they’d end up having a few “good days” in a row and we’d conclude that we were being paranoid and that everything was fine. Until the next time, anyway.

At their 3-year checkup, we brought up our concerns (again) to our pediatrician. We couldn’t articulate them all that well… aside from the speech delays and meltdowns, we couldn’t quite put our finger on what was wrong. It was more a sense of something just not being quite right. Despite the fact that the boys were pinging off the walls throughout the checkup (as usual) and that the nurse actually advised us not to bring them both in at the same time anymore (wimp), the doctor took a “let’s see how they’re doing in six months” approach. Up to that point he’d been telling us that they were just on the “slower end of normal” and that they’d catch up. We were starting to feel like we were past the point of “wait and see.” Surely despite being preemies they should be catching up by now, and their meltdowns seemed out of all proportion to anything we saw from other kids.

(Note: fwiw, we changed pediatricians soon after this)

Not long after that was the “incident.” It was an outing to Toys’R’Us, and as usual the boys were playing at the train table. Another little boy was playing with them, and he kept trying to grab a train from Cuddlebug. Cuddlebug kept turning away from him, but the boy was persistent and I guess Cuddlebug decided he’d had enough. He made a little fist and popped the other boy in the face. The boy seemed more stunned than hurt, but naturally he started crying. Cuddlebug’s response was, well, disturbing – he showed absolutely no concern for the boy, no reaction at all to his crying. We immediately jumped in to apologize to the little boy and his dad, and tried to get Cuddlebug to say sorry for the other boy’s “boo-boo.” He completely ignored us. He had gone back about his business playing with trains as if nothing had happened. Given his lack of response, we felt the only thing we could do was take him home. He went ballistic and we had to carry him, kicking and screaming, out to the car. Thank goodness Bearhug was being pretty cooperative that day.

After that, there was no more denying that something was wrong. I started doing research online and the thought came to me to look up autism. It seemed a strange thought, since I knew almost nothing about autism, but I did and was stunned at what I found – a laundry list description that fit our concerns about both Cuddlebug and Bearhug to a tee. So many of the things we hadn’t quite been able to put our finger on or put into words were laid out plainly in the various descriptions of autism signs and symptoms.

I called our pediatrician’s office, told them I thought our sons might have autism and that I wanted to have them evaluated by a specialist. He seemed noncommittal when I told him what I had found, but he gave me a referral to a pediatric neurologist. Not that he had a choice – now that I had evidence that we weren’t crazy, I would have camped out on his doorstep if I had to.

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Anonymous said...

Just read this, Danette. The diagnosis-horror story is all too common. Alas.

I'm about to post my AAM post, and will come back to link. (I also plan to visit your other site today.)


K on April 20, 2009 at 8:05 AM said...

So true this story rings for me
R was so autistic at 18 ,onths and yet we kept getting the boys talk late etc - we litereally missed out on almost a year of therapy

stephen on August 2, 2011 at 12:17 AM said...

Massachusetts does a poor job dealing with families with autism..The BSEA would not allow me a hearing , and I pulled my son out of school at 16


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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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