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Special Needs: Undiagnosed is Disabled

Rebecca Shayler-Adams by Rebecca Shayler-Adams Additional Needs

Rebecca Shayler-Adams

Rebecca Shayler-Adams

We are just a typical family muddling along our day to day lives. 4 kids, 1 with autism, 1 with an unknown neuromuscular condition

People, including parents of disability, sometimes can’t get their head around the fact we have no diagnosis. In fact I can’t get my head around the fact we have no diagnosis.

I don’t have an answer as to why my daughter’s organs are failing, I have no answer as to why her skeleton formed just slightly differently to what it should be, I have no reason why my daughter still has to eat purees, I have no reason why my daughter lacks noise.

I just have a lot of questions no one can answer;

Will she outgrow some of the difficulties she has?

Will she learn to talk?

Will she eat solid food?

Will she ever walk?

What level of care will she need throughout her life?

The hardest question though; will my daughter live a normal lifespan?

We left the hospital a couple of months ago with a list of numbers, but not the hospital’s receptionist and test results telephone line, but to family therapists.

The following health visitor visit, for the first time ever, I cried in front of her, as she told me she now has to prepare me for the news no parent wants to hear.

Yet all of this is on a condition no one has a name for.

It still maybe the case that my daughter will live to be a pensioner and this is something I cling onto, but people can’t seem to understand that having no diagnosis and having all the tests under the sun come to the same inconclusive result is hard.

Everything is saying something is wrong with our baby, but no one can tell us what is wrong.

I may not have a syndrome name, we may not have a primary diagnosis, but we still go to physiotherapists, occupational therapists, consultant’s appointments at 2 different hospitals, as well as all the home support, that comes with being a parent to a disabled child.

Yet for some reason having no diagnosis outshines what we do daily. That having no diagnosis means our disability doesn’t exist.

What does undiagnosed actually mean? It means my daughter is super rare, or that our modern-day marvels just aren’t advanced enough to tell me what is wrong with my baby.

It does not mean she is not disabled.


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