Tuesday, October 14, 2008

Searching for Diagnosis, Part 2

By the time I got a call back from UW CHDD, it was 18 months after I had first reached out. After that much of a wait, I felt like telling them to take a hike but I didn't want to leave any stone unturned. I felt, and still feel, that the more expert eyes on Shea the better. So, I went ahead and scheduled an evaluation.

The CHDD scheduled two consecutive weeks, 9:00 to early mid-afternoon to cover all the testing and evaluations. The first week we would be meeting with the Pediatrician and a psychologist (more standardized testing). The second week was Occupational Therapy and Speech Pathology.

First, let me talk logistics. When you live on an island, you are literally at the mercy of the ferries and peak traffic. To assure being in the University district at 9:00, I would have had to be in that ferry line very early. Luckily my mom lives on Queen Anne, we just decided to crash there for the night and drive across town in the morning. In theory it worked fine but, of course, I got very little sleep being away from home in a different bed and worrying all night. So, by the time I rolled into the CHDD the next morning, I had a pretty crappy attitude and was ready to do battle with the folks that blew me and my boy off for a year an a half.

We started out with the Pediatrician who did a very thorough evaluation. Nothing unusual came up. Although, he did suggest a formal hearing test which they were able to sneak in that day right after his evaluation. That test confirmed what we had already known; Shea hears fine.

Next stop was the Psychologist who observed Shea play and administered tests while I filled out a pile of questionnaires. I felt Shea was not able to really perform well due to being hungry and tired. Why they didn't schedule time for a break and/or lunch for a toddler, I have no idea. We got through what they could but I asked them if we could do the rest first thing at the next session. We finally got out of there at about 2:00. Whew...long day. Shea was a champ. I was exhausted.

The next week went a little smoother since I knew what to expect and slept better in Mom's guest room. We got the cognitive testing done first thing while Shea was fresh and perky. And, he did test much better than the previous week.

Next stop was the Occupational Therapy and while Shea jumped and play with balls, a social worker was there to talk to me. Maybe I had been flagged as a troublesome parent or maybe it was standard operating procedure but she was a very sweet, elderly lady who obviously had been working in the field for a very long time. She gave me a lot of good advise about how to deal with the school district, insurance company and how to handle the IEP meetings, etc. She was very compassionate and did a lot of listening and I was able to get a lot off my chest. She did agree with the consensus that Shea was not autistic. And, she encouraged me to include him in more group activities with typically developing peers.

The last meeting was with the Speech Pathologist. Incidentally, she happened to be a friend and colleague of Bubble lady. She was very assertive and pretty demanding of Shea. And, here is where she dropped the mini-bombshell. She didn't think Shea had Apraxia but very low tone in his lower face and mouth. This sort of took us away from a Neurological disorder and back to a physiological issue. Sigh...

She strongly suggested the PROMPT method in his treatment and demonstrated how using her hands to touch Shea's mouth can help him form sounds. He fought and resisted her but it did really seemed to work.

Come to find out PROMPT certification is a long and arduous process and that there are very few Speech Therapists who have it. I did some looking around, thinking I would add it to Shea's specialist mix but it wasn't happening. Bubble lady has more than a little bit of experience with PROMPT during her 30 plus years in the biz. That and her good solid relationship with Shea helped us decide that consistency and comfort zone was key.

I remember asking the Speech Therapist at CHDD if Shea's issue was something that he would grow out of or he would just "catch up" eventually. She said, "Not without help."

As parents you never really know if you are doing the right thing. How can you? It is only through hindsight that you can determine if you took the right path. So, until we get there, we just continue to muddle through.

So, what did we really get out of all that? Good question. I suppose a little peace of mind, some good suggestions, some compassion. Maybe the most important thing I got was; there is no doctor that is going to "cure" my kid. The "cure", if there is one, is the journey and the only one who has the capability is us, his family.

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