In the Down syndrome community there is a lot of talk about when a family received the diagnosis. How it is presented, how families felt, how friends, family, professionals and strangers all reacted, and helped or hindered.

Until I started communicating with families on-line, I didn’t really account for such a thing as “The Down syndrome community.” Then I entered an even broader community of families and advocates in the “Disability Community.” Here I have learned so much about the variety of issues that families face. And one issue that has pretty gigantic challenges is when there is no diagnosis.

What if there is no diagnosis?


I have a tiny bit of experience with that in my personal history, enough to give me empathy, but it’s only the tip of the iceberg when compared to wanting information for your child. Where am I going with this? Three places: About a Diagnosis, Diagnosis Finding, and PACS1.

FWFI’m going to use today’s Free Write Friday to ramble a bit only about the first thought, No Diagnosis. (Tomorrow, we will fight the good fight – what I call the Google Battle – with PACS1 and Diagnosis Finding.)

Alright, timers a ticking…In the days of the Innocent Prince was there a “diagnosis?” What did that mean or not mean to a family to have a clear idea of what the future can mean or bring for our children. Wait? Does a diagnosis do that? Of course not.

As history has written and rewritten itself, science has also been written and rewritten. Because of science we now know, for example, a person with Down syndrome has 3 copies of the 21st chromosome. However, before science isolated this chromosome, it was still the case. Trisomy 21 has existed as a genetic fact in human beings for as long as there have been human beings. But what of it? Inclusive societies, inclusive families, have found that children born that are, well, not the same as the other children in the family, can and do thrive when given education, opportunities, and love. Children that were stashed away, hidden, did not thrive. From my perspective that’s a duh moment, but…Am I wandering again?

The thing is a diagnosis is a modern issue that when they began discovering often led to another excuse to exclude, to banish, to grieve.

Then, the pendulum swings, a diagnosis in the world today can also lead to expert help, a diagnosis can lead to correct and most helpful therapies and treatments. With a diagnosis a family can get support for their child, especially in the early years, the fight for years, the years that are most important to get the ball going. No diagnosis in today’s society can be a very lonely island of wondering about what to do? And where to start? It feels like a diagnosis can give a better idea of the future, but of course that is an illusion.

None of us know the future and even planning is a bit of an effort in futility. Parents that are warriors of hope know that the future is untold. It is both frightening and full of positive potential. Anyone diagnosed as human has an untold future that he must fight for and gamble upon.

None of this is an attempt to comfort or belittle the frustration of not knowing a diagnosis. Tomorrow I will talk more about diagnosis finding as well as one rare diagnosis, PACS1. Today the timer runs down. So, I close this ramble and look forward to more articulate thoughts tomorrow. 🙂

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