Waiting for the professionals to make a special needs diagnosis is hard work. But according to guest blogger April Brownlee, parents can do more than just wait. They can advocate. Today and tomorrow, she explains her top five diagnosis advocacy tips.

5 Tips for Attaining a Special Needs Diagnosis, Part 1

Years ago, long before my daughter, Catherine, was diagnosed with a syndrome, I found myself in this abyss of symptoms, doctors, tests, and still no answer. I don’t know if there’s a worse feeling than not knowing, because at least if you know what you’re dealing with—even if it’s something awful—at least then you can fight.
It was about that time I heard an interview with Dr. Jerome Goopman from Harvard Medical School, about his then new book, “How Doctors Think.” During that interview, Dr. Goopman delivered a statistic that, to this day, remains one of the most polarizing things I’ve ever heard. He says doctors make up their mind about a patient within the first 18 seconds of seeing them.  It was after hearing that interview that I began to realize how naively I had approached our search for a diagnosis. I just assumed we’d get an answer. And, even worse, I just assumed doctors would see my child, input all her symptoms into their brilliant brains and automatically tabulate a diagnosis.

Since then, I’ve learned so much about the pursuit of a special needs diagnosis.  It’s a journey and we’re not promised a swift resolution, but there are things you can do to make the process more efficient and more effective.

Tip #1 for Attaining a Special Needs Diagnosis: Tell Everyone

It sounds so simple, but all too often, we tend to keep such deeply personal things as medical issues to ourselves. Before my daughter was diagnosed, I may have accosted a nurse—or two—at birthday parties. In my defense, they asked how it was going. I just responded with a very long medical history and might have even produced a checklist of symptoms. I imagine once they thought I was nuts. And I might have been. Staying up all night worrying and Googling potential diagnoses takes its toll eventually. But I truly believed if I told enough people someone would say something that would be the catalyst we needed.

Tip #2 for Attaining a Special Needs Diagnosis: Keep a Journal. And Impeccable Records

Before each appointment with a new doctor or specialist, I would send their office a letter briefly outlining our situation, along with a timeline of our journey, list of primary symptoms, list of specialists, and list of tests already conducted.  Some doctors read the information and some didn’t. But for those who did, I found our appointments to flow better and generally be more fulfilling.  I would also show up to each appointment with my binder of records. Anytime a test was ordered, I would get my own personal copy of the results to add to the binder. If a doctor had a question, I could then quickly produce the answer. Plus, it just made it easier to keep it all straight.

Come Back for More Tips Tomorrow

Oh, I wish I could learn some of April’s organizational skills by osmosis! But since that’s not gonna happen, I’ll be back tomorrow with three more of April’s wish-I’d-thought-of-that tips.

Five Tips for Attaining a Special Needs Diagnosis: Part 2

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