Archive for May, 2016

C4P 1: Getting the Diagnosis

You have just received a diagnosis for your child. Or…you wonder if your child should have a diagnosis. This is a lot to process and we, as parents, can get caught up in all the medical and educational lingo and lose perspective. Sometimes it feels like you walked straight into a brick wall and it is hard to catch your breath. Join us for seven tips to a healthy way to process a diagnosis for your child.

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7 Tips on How to Process Your Child’s Diagnosis

Getting a diagnosis for your child may have come after a long process of trying to figure out what is going on with your child. Learning or behavior or medical struggles may have sent you down a road you never thought you would travel. And now the “Label” has been affixed.

Here are some things that we have learned in this process that may be helpful to you.

The Grief Factor. You may go through stages of grief in the loss of the dream you had for your child. That is okay. In fact, it is important. Give yourself the freedom to grieve. BUT – don’t get stuck in a downward spiral. There is SO much to life with this child. Look for the roses through the thorns of grief.

Your child is NOT his or her diagnosis. The diagnosis does not define your child. Our Amy HAS CHARGE Syndrome. Amy is not CHARGE Syndrome. There is an important distinction here. We never allowed Amy’s identity to be wrapped up in her diagnosis. Amy is Amy.

Your child’s journey is unique. The label does not dictate what your child will or will not do.  Our Amy’s prognosis was “she will be blind, deaf, and mentally retarded [this was 20 years ago]. She will most likely not walk, talk or eat by mouth.” This was read to us out of a medical textbook when she was two weeks old. Fast forward 20 years. Amy has a field loss in her vision but sees very well. Amy is deaf completely in her left ear BUT wears a hearing aid in her right ear and does amazingly well with the hearing she does have. We like to say she is hard-of-hearing. She is brilliant, an ace on the computer, and surprises us every day with the depth to her intelligence and her thought processes. She walks, runs, dances, and talks a blue streak every day, and at this time in her life she eats 100% by mouth!

Look for the Silver Linings. Always be looking for the silver linings in the clouds if/when they become dark from time to time.  Even through the worst storms, we can find rainbows. The key is to look for them.

Enjoy your Child. Every diagnosis carries with it special challenges. Don’t let the challenges steal your joy in raising this child. Your child is more normal than he or she is not. Meaning – a kid is a kid is a kid. They are so precious no matter what the diagnosis or their delay. Look for and marvel at the uniqueness and beauty of your child’s personality.

Say YES to help. If someone offers to help with either the child with a diagnosis, their siblings, your errands, cleaning, laundry, cooking, shopping, etc. If you feel it is a genuine offer and that person is someone you can work with well, by all means accept the love they want to give you and your family. It most likely will bring them a certain joy as well.

Trust Your Gut. Whenever you are making decisions regarding your child, learn to trust your intuition – your gut. There is a precious “knowing” that happens with parents toward their children that should never be negated or discouraged.

Life is hard. No question. Getting a diagnosis for your child can be heartbreaking. We know. We also know that there is so much richness to life in this unique journey if you will allow it to bless you.

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