You’re The Expert

Posted by Guest Bloggers on 15th November 2018 Additional Needs, Advice & Support

Most of the heart felt posts that I have read over the years are from parents of children who have some type of condition. The brutal honesty of the posts is so refreshing, and I believe them to be cathartic.

I’m not writing to validate those thoughts or feelings.

I’m a pediatric physical therapist of 25 (plus) years, but I’m also the sibling of an adult with special needs. I’ve experienced all that you’re feeling from different perspectives.

My parents are gone, so I am now the caretaker for my sister. From the other side, I have had the privilege of working with families like yours each day, for over 25 years, hoping to make a small difference in your life and that of your child, with the dream of changing their future by starting at ground zero.

I’m the first therapist, the first set of hands that your child will learn to trust. I’m the one who will point out the little changes I see in your child even though they still can’t lift their head or walk. I clearly take my job very seriously, but I LOVE WHAT I DO, as most pediatric physical therapist do.

I’m always in awe of the bravery, empathy, maturity, beauty and innocence of the children with whom I work.

However, I am writing to share some thoughts about your child from another perspective:

Learning starts on day one. Make sure that your child is an active learner. They may only be able to put out 10% with 90% assist but, always remember that ‘neurons that fire together are wired together’, and this can only help with communication, learning and motor.

Everything that you see and report to your doctors and therapists means something.

A twitch, moving one side more than the other, constipation…EVERYTHING!! It may contribute to intervention, or may help pinpoint a diagnosis. Those holy 20 minutes that you get a sit down with your specialists may not be your child’s best, or may not be exhaustive enough to discuss all of your concerns. Come prepared.

Check with your insurance benefits before making any high-ticket purchases, including orthotics, braces, adaptive seating and equipment. Just because theoretically something should work, it doesn’t always work, first see how the device benefits your child, and always ask about the return policy.

There may be years of opportunities in the future to participate in a variety of therapeutic interventions.

There’s PT/OT/SLP/equine therapy, swimming therapy, craniosacral therapy, massage, exergaming…. make sure that you seek out services based on your child’s needs, availability to participate, desire to participate, level of enjoyment, chemistry with the provider, and appropriateness for their age.

Throwing the kitchen sink at your child will not make them function better or faster. Space them out so that your child doesn’t burn out, and more importantly, so that YOU don’t burn out. You can clearly see whether your child is benefiting from your visits with a therapist. Therapy is expensive, don’t waste your money.

PRACTICE and REPETITION are successful means of learning for EVERYONE.

If you see your child do something in therapy, try to simulate that in your home or in the community.

Try to find community events and nonprofit organizations that have sports and social events to match your child’s needs. That will be as important, if not even more important, than therapy in the long run. It will help create an environment where your child is just like other children, and help you network with other parents, and it’s FREE or less than therapy.

It takes a village!

Make sure you and your interventionist (specialists, teachers, private and school therapists) are all in communication with each other. This will benefit your child the most.

No one person will push your child ahead, it is the combined efforts of everyone, carryover from one setting to the other, and working on common goals that overlap or complement each other that will help your child achieve their goals. Hint: email is one of the best ways to keep a log

Ask lots of questions. It’s not insulting to a doctor or therapist when you want to understand why they’re doing what they’re doing. It means that you’re interested. If anyone is insulted by that…. think twice about going back!