Welcome to the World of Special Needs Parenting  (A letter to newly diagnosed families)

Welcome to the world of Special Needs Parenting! It’s not somewhere you ever thought you would be, nor would you have ever chosen to be here. There are a lot of emotions going on right now, and you’re reading everything you can get your hands on right now to find out about your child’s diagnosis. Back away from the computer! It’s okay. Take a deep breath and hug your child (if they’ll let you).

I’m here to tell you that there is good news and bad news.

The bad news (because I prefer my bad news first), is that you are going to go through a grieving process. You are going to grieve your dreams of your perfect child who you thought would have no medical issues or other issues. You are going to grieve what your child has to go through and what the new reality of their life (and yours) is. You are going to be mad, scared, angry, and sad. Take the time to do that. Trust me, things will go better if you do.

Be prepared, this is a roller coaster. It’s one you don’t really ever get off. Just when you think things have settled down, a new diagnosis comes up, puberty happens, things that were working suddenly don’t, but there is help. This is where the good news comes in.

The good news is, is that you are about to meet some of the most caring, and wonderful community of people you have ever met in your life.

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One of my community of caring people.

And trust me on this, you want to make those other special needs parents your new best friends. They are the ones who are going to let you in on the secrets of how to get things covered your insurance company denies, where to get the best, cheapest and delivered to your door medical supplies, and who the best doctors and therapists are. They will literally save your life more times than you can count in the next couple of years.

Make sure you have a really good pediatrician. They will be at the center of all of this and you want them on the top of their game for your child. Taking them goodies doesn’t hurt either. 😉 Therapists too.

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R and D with their former OT and PT. Life Skills and Kids R People Too LLC, the best OT and PT we’ve ever had!

Some of our Therapists and Special Education Teachers have become some of our best friends.

When you are ready, DO share your child’s diagnosis with family and friends. They need to understand what’s going on so they can help you. You need that support and understanding. Take those offers of dinner or babysitting. (And if those offers don’t come, this is another reason why you need your new friends, “Special Needs Parents”.) There is nothing to be ashamed of with a diagnosis. It’s just what is.  It’s just where you are at right now. If you don’t share the diagnosis with your loved ones, the school, church teachers, they don’t know how to support your child. Knowledge is power. Power to help, power to have more patience, power to understand and this is extremely valuable for our kids and for you.

Most of all, know that the diagnosis doesn’t change who your child innately is. They are still your baby who you have loved, the person you have known. This is new territory and one you didn’t expect to find yourself in. Give yourself and everyone in your family some grace, spend your time grieving, and then find your community. You’ve got this!

(This was written, as a reflection of what I would say to a couple of friends who have joined the ranks of “Special Needs Parents” unexpectedly in the past year, and I wanted to put some thought into what I would say to them if I could sit down with them over a bowl of ice cream.)

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