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To the Therapists Who Support Kids With Disabilities, From a Grateful Sister

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My younger brother, Mickey, has severe physical and intellectual disabilities, including cerebral palsy, a rare genetic disorder that is closest to Phelan-McDermid syndrome, multiple other genetic mutations, being on the autism spectrum, having severe sensory issues, a GI tube in his stomach because he aspirates, and more.

From the minute he was born, I was so excited, yet terrified. I had no idea all of the special things his chromosomes decided to do, so I decided I would go to every therapy and doctor’s appointment I could. I wanted to help in any way I could, and this was the only way I knew how. My stepmom and dad were so patient with trying to teach me everything they could and make it understandable to me, since I was only 12 at the time. Anytime I could, I was trying to watch and observe, take mental notes on what I could do if they needed help or wanted to just nap for an hour. More than anything, I was so overwhelmed by the love I felt for this little boy. There are few words to describe it, but he turned into my everything and I would do just about anything to make sure he was safe and happy.

When Mickey was about 1 or 2 years old, there was a program called First Steps in the Kansas City area that would offer therapy for children 3 and under, and they even went so far as to travel to your home in order for the children to be comfortable in their own environment. For Mickey and his anxiety and sensory issues, this was heaven-sent. I remember first meeting his physical therapist who came to our house and she was simply amazing. She was giddy, kind, smiley, and just seemed so happy to be there and help our family.

We constantly had to explain Mickey’s diagnoses to so many people during countless late-night ER visits, hospital stays, appointments with specialists, so we had become used to people kindly nodding and going from there. However, this therapist was so intent on understanding everything about Mickey to give him the best treatment. She worked so well with him, it was clear that this was her calling and her joy in life. She didn’t have to say it, you could just tell by the gentle and kind energy she radiated when she was in the room.

From then on, I knew that is what I want to do for my career. I wanted to feel that kind of joy and I knew I could get that from working with kids like my little brother! Ten years later, I got my acceptance letter into the Physical Therapy program at Rockhurst University in Kansas City, Missouri. During my practicum for my Exercise Science degree, which I am currently finishing as I write this, I have been lucky enough to be placed at Ability KC in Kansas City. Ability KC works with a multitude of children and adults with disabilities, offering full-day and partial-day programs. I currently intern on the pediatric level, which offers physical therapy, occupational therapy, speech therapy, and even has a classroom to aid children in their school work so they do not fall behind while being a part of the full-day program.

The staff I have met here continuously make me so proud of the field I am in and bring me back to when I was younger and hoped that everyone who came in contact with my brother would see past their assumptions about his disabilities. I still do hope for that, and it is hard to explain the anxiety of it. You know your sibling, your children, your family member, and you know how the world often sees them, regardless of all the beautiful things about them. However, there are beautiful people who have taken on this career of working with these children and are dedicated to understanding the things that make each child unique. Let me tell you, it has almost brought me to tears numerous times.

I have watched these therapists and rehab techs bring children out of depression. I have seen a few patients who came in very quiet and depressed completely blossom into a new person. I have seen them interact with each parent and take on countless questions because they understand the anxiety of having to leave their children alone with new people. From personal experience, I know it is hard to gain complete trust from parents because it’s how my family was. Mickey has significant and complex support needs, so it is terrifying to leave him in the care of someone new. Yet these therapists happily spend the time and energy going over every meticulous detail with the parents in order to make them feel as comfortable as possible.

I see the constant running around and conversations between each type of therapist to make sure each child improves. I watch the therapists sit and talk with each child in order to get to know them and gain their trust as well. I have fallen in love with this facility and each person who works so hard to make sure each child knows they are more than their disability. My little brother is my whole world, and I know each family member who brings their child to this facility feels the same way. The weight it takes off your shoulders knowing your sibling/child/family member is safe is unreal. You meet certain people in life that just make you stop in your tracks because you just can’t believe the beauty they bring into the world — that is what I have found here at Ability KC.

To every therapist who takes the extra time with a child to make them feel better, who tries to figure out the little things each child likes, who stays late and arrives early to discuss new paths for therapy that may work better, who constantly has a smile on their face even though the job can be physically and emotionally draining, thank you. From the bottom of my heart, thank you. To the therapists here, and to therapists everywhere who work the extra hours and who have made it their goal to help those who can’t help themselves, thank you. This big sister will always be thankful and this future therapist will always look up to you.

Originally published: May 11, 2021
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