When people ask me for Aidan’s diagnosis, I say he has development delays and hypotonia (low muscle tone.) Those are words that get you nowhere. When he turned 6, he lost some services because that diagnosis was no longer valid. Happy 6th Birthday, poof, your disability is gone. No wait, the disability is still there but your services aren’t. In school he is labeled as multi-handicapped. That only works for school. Many agencies have different qualifying criteria. Don’t try moving to a different state because they may require a different name.
I know that saying “My child has Down Syndrome, Epilepsy, Cerebral Palsy etc” would only be helpful to a degree. I know those moms would be more descriptive as well, wanting to relay the strengths and individuality of their children. They may even have to fight harder to not allow the children to become the sum total of a diagnosis. Certainly these families who can give a name and number (yes, that’s what a diagnosis comes with) to providers still have to fight for services. That’s just ridiculous.
I have the medical history speech. I have the curious children speech. I have the fighting for services speech. Now I give to you the elevator speech for Wear Blue for Undiagnosed Children Day this friday. Feel free to say whatever you feel comfortable saying (it’s a made up day after all) and share this blog.
I’m wearing blue because many children have disabilities but do not have a specific diagnosis. They have special health care and educational needs. Without a diagnosis, it is sometimes impossible to get the support needed for them to be fully included in their communities. While that’s a very real struggle, I’m wearing blue to remind me of the smile in Aidan’s eyes, which is more powerful than any diagnosis.
Who else is in?