It’s funny when there’s no one specific diagnosis for your child. There’s no banner to wave or cause to support. No dinners or fundraisers or awareness day. Specifically my son. Thomas was first diagnosed with bipolar disorder shortly before his 6th birthday. This was the first diagnosis to try and explain the behaviors we were dealing with. And it made sense at the time (still does for some behaviors). About 5 years ago we saw a well respected neurologist who in combination with Thomas’ history and test results (MRI, IQ tests, etc…) declared our son as one with “static encephalopathy” which is short for brain damage that won’t get worse nor will it get better.
I covered these diagnosis in the very early entries of this blog but I don’t expect anyone to remember, if you do I’m impressed :). Anyway I find myself sometimes envious of those parents with specific diagnosis. Not envious of the specific diagnosis believe me I don’t think any special needs parent has it easier than any other special needs parent.
I think I know what I sometimes miss as Thomas’ mother. When he was first diagnosed bipolar I dove into an online support group and found the most wonderful people there. The support I received was second to none and the people were so full of compassion. They had knowledge either learned first hand or they were very well read keeping up on all the latest literature. I even attended a fund raiser with one of my friends (Diane) and we had a ball. These days with Thomas not living home and not being “exactly” bipolar I don’t feel identified with any such group. I still adore and keep in touch with the people I met but we don’t just see our “kids” as just with bipolar, we support each other as parents on a similar journey. As parents period. Parents who have a child with special needs. Overall I think that’s what it should be about. We’re all parents dealing with situations outside the “norm” when raising our children. We all have similar feelings about certain situations. There are many universal emotions we all go through. Although, to play devil’s advocate to myself I do understand certain disorders/diagnosis do have specific issues only another parent or care giver would understand. On the other hand, one of the best conversations I ever had was with a woman I had never met. I was given Jeanette’s phone number so I could speak to another parent who’s child was aggressive to her and they had to place their son in residential care. Jeanette’s son is autistic, but diagnosis didn’t matter one bit. We met and bonded over similar behavior, similar emotions, similar fears. We spent over an hour on the phone talking and even laughing.
These days with Thomas away at school I don’t get many opportunities to talk with other parents like I used to. His school holds events here and there but we’re not always able to go due to the distance and the girls’ schedules. Some days I miss being a part of that “group”.