Adaptive Equipment. Where to Start?

When my son was four months old, he started Physical and Occupational Therapy. His pediatrician had referred him to therapy because he wasn’t meeting his developmental milestones. She had also referred us to a Pediatric Neurologist to get a diagnosis – but this appointment was 6 months away. It was a very scary time. I, like most people, am extremely fearful of the unknown.

I was selling real estate at the time and was blessed to have a job that allowed me to attend all of Phoenix’s therapy sessions and medical appointments. He qualified for early intervention services and we started Occupational and Physical Therapy sessions once a week at St. Joseph’s Regional Medical Center in Lewiston, Idaho. His OT was Julie Olszko. A middle-aged woman, well established in her career, she had seen a lot. I’m sure she could have diagnosed Phoenix with cerebral palsy after our first visit but of course that wasn’t her job. When I mustered up the courage within myself to ask her what she thought was wrong, she voiced her suspicion that it was CP. I will always appreciate her honesty because talking about it during that time made the eventual shock of the diagnosis somewhat anticlimactic. “Okay, he has Cerebral Palsy…that’s what we thought.”

Her version of this story would be fun to hear, particularly her impressions of me, a mother in the first stages of the journey. Filled with denial and tons of hope, my son was going to walk. There were whispers that he might not and I simply could not accept this possibility. I spent hours on the internet, researching potential treatments and “cures” for Cerebral Palsy. If I had had the money, we probably would have traveled to China for Stem Cell Treatment. One night I was researching stem cell therapy on www.stemcellschina.com. The site is pretty cool – you can see before and after videos of children who have received stem cell injections. I was drawn to a little boy from Portland, Oregon who was a few years older than Phoenix. He seemed to be similarly affected. He was walking in a cool contraption that appeared to be spring loaded – he could bounce up and down as he was walking and he didn’t have to hold onto anything. He looked so happy and free. I wanted that walker for Phoenix.

Phoenix was in daycare and it was time for him to graduate out of the infant room into the toddler room. The logistics of that transition were a nightmare – he could not sit up without assistance and he couldn’t stand or walk so how could he co-exist with active little kids running and walking around him? He would be tripped over, kicked or even worse, laying by himself in the corner of the room. My mind was finally opening up to the world of adaptive equipment. A walker would allow him to be at the same level as the other kids.

Julie had tons of catalogs of adaptive equipment. Surely, it wouldn’t be hard to find this particular walker. Not so. It didn’t seem to be in any of her catalogs and the pictures she showed me of other walkers quite simply brought my ignorance to the surface. I did not want my son to look handicapped. Even as I write this, I am ashamed that I even had (and still have) that thought. It is all a part of the lessons I was put on this earth to learn – what is important and what isn’t. It is a natural desire to want to fit in and I didn’t want my son to be different. I used to wake up in the middle of the night and go out and sit on my front porch to bawl my eyes out. I sobbed, thinking of my little boy as a teenager, being teased or bullied or ignored. If the equipment scared me, surely it would alienate his peers. What I was forgetting was that I grew up during a completely different time. I don’t know about other Generation X’ers, but I did not grow up with any disabled kids. How is that possible? Obviously, they were shuffled away to the special education building or campus, completely separated from the mainstream classes. Society has evolved. Part of what has made that evolution possible are the amazing advances in adaptive equipment. The equipment makes it possible for children with disabilities to participate.

It took a little bit of digging (thank God for the internet) but I finally found the manufacturer of the walker I had seen on the stem cell site. It is the Mulholland Walkabout Gait Trainer and I would recommend it to anyone who has a child who has mild to moderate cerebral palsy. (http://www.mulhollandinc.com/gt_gaittrainer.php)

How much does it cost? Around $4,000. I personally had to have a fund raiser to buy the gait trainer for Phoenix. God Bless the community of Lewiston/Clarkston for their generosity. I had a single spaghetti feed dinner and was able to raise all of the funds necessary to buy the walker. He was almost two at the time.

So what should be the first piece of equipment you buy? Depends on your child, of course. But the reason I felt this one was the obvious choice for my son was that it allowed his brain to make the connections of putting one foot in front of the other and to know the feeling of walking. To feel the freedom of being able to propel himself. Most importantly, to stand at the same level as his peers. I didn’t want him to go straight into a wheelchair, because then it would be like I gave up on the prospect of him being able to walk someday. I am now okay with the possibility that he won’t walk – however, I am not the one who needs to make that decision. He does. I want to keep his body active and his muscles and bones healthy so that he can continue to attempt to reach that goal, if he wants to. If he doesn’t want to walk, I’m fine with that.

When we go out, I always give him a choice. Do you want your walker or do you want your wheelchair? He always chooses the walker. The joy on his face when he is walking down the street or through the mall makes people smile. They approach us and say, “That is the coolest thing I’ve ever seen.” I would have to agree.