esterday we FINALLY had the appointment with a developmental pediatrician for B and N. It’s been a little over 15 months since the center got our paperwork and started trying to get us an appointment. The developmental center is the only one like it near us and they can only see a certain number of kids a day.
I guess I was expecting to go in, speak to a doctor, the boys would be evaluated and we would leave with the ball rolling on a diagnosis.
The boys only ended up getting a physical yesterday and we went over some intake paperwork. During the appointment, I lost it–emotionally, blubbery and crying. I’m just tired and frustrated, but more I want my boys to be ok. I want them to get the help the need. I wanted to quit crying so bad, and I just couldn’t stop. I felt like an idiot. In the past 3 years we’ve sat through many a psychologists interview, evaluations, testing and I’ve held it together. I don’t know what’s so different about it now, maybe because now everything is getting “real”. I remember during a family therapy session when the twins were about 4, their therapist said “You guys seem to be handling everything well, you don’t look tired or worn down.” If she only knew.
The doctor was right in saying “right now having a diagnosis won’t change anything.” I think the maddening thing is the wait and the length of time all of this takes. I don’t want a misdiagnosis for them because someone jumped the gun. When they were originally diagnosed and in order to make a diagnosis fit the symptoms there were acronyms tagged on. ”You’re kid has this and this and this and this.” Maybe that was jumping the gun, I don’t know anymore. I feel like we have bits and pieces.
Now we’re on to the next step: N will go back to the center in a month for a speech evaluation specifically targeting the social area of language (pragmatics). When his speech was evaluated last summer he scored well in receptive language, and he has a good vocabulary, but he had a below normal score of expressive language. We will also meet with a psychologist. We also have started the process in 504 plans at the school as well. February is also our 3rd month (that’s what we call it) where its time for all of the routine doctors appointments to fall at the same time, so we’re going to be busy!
A couple of months ago I came across the Autistic-Like documentary, and it was like watching my boys’ journey. How many other kids are stuck in this limbo? There are issues A B C and D, but they don’t fit the diagnostic criteria., which makes it hard to get the services and therapies and support these (and our) families need.
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