Please Shine Color: An Open Letter to Specialists of Children with Special Needs

Please Shine Color- An Open Letter to Specialists of Children with Special Needs

Dear Specialists Who Work 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 all grandmothers should have solutions to 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.

In our desperate hours, 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 very logical parents.

We know the definition of reality and we know that 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 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 desperately for light. We look for the hint of a rainbow.

Please don’t disappoint us.

We count on you.

Signed,
Faded Parents

Note: When I left the classroom to help parents find educational solutions for their child, I vowed never to make a parent feel helpless and alone. My mission is to bring light and colour back to your already complex lives. I aim to do so with joy and endless hope for a child whose future is not determined by a medical evaluation. Your child is meant to thrive in the way that he is going to. I am on the other end of the line waiting with a smile, solutions, and, sometimes, wine to go along with our linguini.

If you’re interested in getting to the issues you’ve been struggling with for months, schedule a consultation.

Learn how I can guide you

 

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Please Shine Color: An Open Letter to Specialists of Children with Special Needs

6 Responses

  1. Wonderfully written. I feel as though you have been inside my hardest moments as a parent and I think this is a very good picture for specialists to keep in mind as they are working with our children and our families.

    Rachel November 18, 2014 at 2:30 pm #
    • Thank you for this comment, Rachel. I hope it reminds professionals how very fragile we parents are. The words they choose and the way they communicate with us can make or break us – especially on our very difficult days. A word of encouragement, because it’s heard so infrequently, goes a long, long way in our home. I’m sure it’s the same for you, and for all parents.

      Gabriella Volpe November 18, 2014 at 3:14 pm #
  2. That was perfectly written. I don’t think that I have ever thought of it in that way…but there is so much grey…and so very little light and colorful rays of hope sometimes. With our son, for years I just prayed for help, for someone to actually know what to do to help him…I think I have lived in grey for years. We have ran into some color lately, over the last couple of years we have come in contact with teachers who were positive and knowledgeable…I have sat stunned on more than one occasion when they carefully laid out their plans and felt confident he could learn and succeed. Sometimes I think we are so lost in the grey, we forget we are there. Thank you for the incredible post!

    Beth November 18, 2014 at 4:44 pm #
    • Oh, I hear you, Beth. I will be so bold as to generalize that we mothers, who often take on the primary nurturing role probably take the biggest punch because we’re on the front lines. I am happy to hear that you are on your way to finding some color. I pray for rainbows for you, your son and your family. Thank you for leaving this comment. It will help other parents feel heard as well.

      Gabriella Volpe November 18, 2014 at 7:10 pm #
  3. This is just beautiful, Gabriella. Hope is the greatest gift professionals can give. Thanks so much for adding this to DifferentDream.com’s Tuesday link up.

    Jolene Philo November 20, 2014 at 9:10 pm #
    • Thank you, Jolene. Hope is indeed a gift. Wish it weren’t so rare …

      Gabriella Volpe November 21, 2014 at 9:51 am #