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What I Want Specialists Working With Our Child With Special Needs to Know

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Dear specialists working with our child with special needs,

Ever since the birth of our son, we have lived in a grey zone. Vague answers, looks of uncertainty and lots of shrugs.

No issues regarding our baby were ever found in a “What to Expect” book. He fell off the milestones chart by the second month. Even seemingly simple questions were met with an “I don’t know what to tell you.”

We learned early on that we had better buckle up and find the answers ourselves. We became experts on our son.

Over the years, we have tested and settled on adequate meal solutions, sleep remedies and medical alternatives. We’ve fought for services, funding and rights. We’ve devised an educational plan to suit his needs. We’ve knelt by his bedside sick with worry when there was no explanation, and when the only thing we could give was our presence.

All of it was done with unconditional love and hope for our child.

Along the way, we have never received the vote of confidence we expect from professionals. We’ve never been handed the reassurance that things will be OK.

You cannot imagine what it’s like to live with endless worry and uncertainty while receiving zero support for it.

Please understand we are logical parents. We know you have to cover your professional behinds by carefully crafting what you tell us.

However, there is something to be said about an outsider giving parents a pinch of hope when we are void of solutions we fought so fiercely to find ourselves.

We know life cannot offer guarantees, but I believe it’s OK to occasionally utter a little white lie in an effort to comfort and encourage us to keep going. Sometimes one black or white statement will be enough to take us out of grey for weeks.

We’re tired of being grey.

Grey is that zone where no one really sees you because they don’t know what to do with you anymore. Instead, they keep passing the buck from one professional to another until we finally throw in the towel to run from red tape.

Grey is the sleepless nights where questions are launched into the darkness knowing there may never be answers.

Grey is where friends stop calling because your stories are too much to handle over dinner, and the last thing anyone needs is a dark cloud lingering over their linguini.

Grey is unfamiliar and so far removed from your reality that even you falter when we ask, “But will it work? Will it all be worth it in the end?”

Yes. Please, just whisper, yes.

We are tired of living in the grey. We’re tired of being tossed about from one file folder to another, from one person’s desk to another, from one unknown to another.

We’re just tired. And you coming into our home should not add to the grey tones. If we open the door to let you in, we search your face for light. We look for the hint of a rainbow.

Please don’t disappoint us.

We count on you.

A version of this post originally appeared on Gabriella Volpe’s site.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

Originally published: October 1, 2015
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