After two and a half years on the waitlist, recently our seven year-old son, Kai, was blessed with an incredible gift – his very own physical therapy bike. If you’ve never seen one of these before, they are built to the specific size of the person who will ride it. The rider sits in a seat that can include a seatbelt as well as straps for upper and lower body support. The pedals have straps to hold the feet on in two different ways. The bike also has rotating hand grips so the upper body is worked at the same time as the lower body.
These bikes can cost several thousand dollars. If your child is in physical therapy, and they qualify, you can apply to get on the waitlist to be awarded one of these bikes. All you have to do is ask.
When we got the call that Kai’s name came up on the list, we were overjoyed. Kai has limited interests but he has always enjoyed using these bikes in therapy and at school. And now, he would have one of his very own.
We measured Kai per the directions that we were given and sent his measurements where we were directed to send them. We received paperwork stating that we needed to show up at a school in a town about an hour away, on a Friday. So, we pulled our son out of school and we went.
Unfortunately, this also ended up being one of those days where Kai decided that he would rise, for the day, at 3 AM. Which meant, that I, too, started the day that early. If you are living the special needs life, you know how precious sleep is. But, as a caregiver, you know that we don’t always get what we need. They come first. So, up at 3 AM we were.
When I have had enough sleep (when does that ever happen?) I am a different person than when I am sleep deprived. I mean, who isn’t? So I wouldn’t say that I was at my best on this day. But we were an excited family and so, with sleepy enthusiasm, we went off to pick up Kai’s bike.
We arrived at the outside check-in desk where several middle school students as well as supervising adults were waiting to greet us. The girls greeted Kai and when he didn’t reply, I said, “Kai is mostly nonverbal but he is very happy to meet you.” The girls looked surprised but still enthusiastic. Then the supervising woman handed me a familiar looking form. It was the same one that we had filled out 2 1/2 years earlier and she wanted me to fill it out again. Kai decided to take his tablet and sit down right on the sidewalk to relax. His Dad and I let him.
There was one line on the form for the question, “What is your child’s diagnosis?” I suppose that’s enough for most folks filling out the form. We have eight diagnoses, so I starting fitting it in as best as I could. I managed to make it to the seventh one this time and only had to look in my phone on the list I keep there for the eighth one; I’m getting better at remembering them all. Which makes sense, since I often have to list them or put them on forms.
The middle school girls were watching the seemingly ever growing list and their mouths opened a bit wider as I went. But they restrained themselves from commenting. I’m used to it. It’s a lot to take in.
I completed the form and handed it back to the woman. They gave us a pair of free socks for Kai with bikes on them (and it occurs to me right this second, where did we put those socks?) and a middle school girl was assigned to us to walk us into the school and take us to the gym locker room.
There were many families waiting there to have a physical therapist make the final adjustments for each child and bike, as all were built to size through measurements sent in. There was only one PT, so it was a bit slow. I decided now was an excellent time to use the restroom and left Kai with his Dad and went off. Finishing in a stall, the lights suddenly went out. For half a second I thought, “Power outage?” And then, right on the heels of that thought came, “Nope, it’s Kai.” Kai LOVES turning on and off light switches and had plunged everyone into darkness. The lights immediately came right back on, which means Daddy was on the case. Phew.
When I returned, a representative from the school was asking each family to send one member with her so we could find out what was happening NEXT, as the school was celebrating the fact that they had raised money to donate for the bikes being given to the children with special needs. I went and Dad stayed behind with Kai, still waiting for the PT.
With two other mothers, I followed the woman from the school into the gym. Now picture this – a large middle school gym that has high ceilings (something that freaks Kai out), that echoes (Kai has Sensory Processing Disorder), a table where the principal is sitting, playing LOUD celebration music and they want Kai to do what?
The other mothers and I stood there as the woman from the school launched into a VERY fast explanation of the plan.
“Your child will sit on their bike at this starting point. They will ride from one end of the gym to the other, turn around and come back. We will announce their name over the loud speaker and the entire school will sit in the bleachers and applaud them,” she said, nodding like we were totally with her.
Remember, we are special needs moms. We are overworked, usually exhausted and sometimes in a daze. One of the moms said, “I’m sorry… what?”
“I’ll walk the path and show you,” the woman said and took off across the gym.
We three stood there, blinking. One Mom said, “I’m sorry, I have no idea what she just said.”
I leaned in. “Don’t be sorry, we’ve been up since 3 AM. I have no idea either.”
We all nodded. We all understood each other, if not her.
The woman came back, I asked for clarification and we finally understood. Several HUNDRED middle school students were going to burst into applause after they say Kai’s name over a loud speaker, music will blare and Kai is supposed to ride his bike through the gym.
The other mothers and I eyeballed each other nervously. The woman from the school seemed to think it was a perfectly fine plan and led us back to the locker room.
I was slow to react, purely from lack of sleep. But when I walked back to my husband, I finally woke up enough to respond.
“I want to opt out,” I told him. I explained the situation. My husband instantly agreed that this was a recipe for disaster. We could both foresee a meltdown from the combination of high ceiling, loud music, hundreds of people and spontaneous applause.
Now, there were some kids there who had done it before and LOVED it. But these were more high functioning kids. They were older. And they liked attention. The exact opposite of Kai.
I went back out to the gym and sought the woman out. When I explained, she offered to lower the music and have the crowd clap softly. I stood my ground. And I didn’t say this, but I decided that if they were not going to award Kai the bike if we didn’t participate, so be it. Kai wasn’t even aware that he was getting a bike, so it wasn’t like he would be disappointed. Kai (and our family, but especially Kai) is my number one priority. Everything and everyone else comes second. EVERYTHING AND EVERYONE.
The woman agreed to let Kai opt out. She asked if we could take his picture. I agreed. Definitely.
When I got back to the locker room, I became friendly with another of the moms. I gave her my card and asked her to contact me later to become friends. And I told her and another mom that we were opting out of the gym event. They seemed to think that was a good idea but did not request the same for their own kids.
At this point the PT called Kai’s name and we went to get his bike adjusted. The bike was amazing. Built to Kai’s size, with a handle on the back for us to help him steer. It even had a little license plate on the back with his name on it. It came with a helmet (which he refused to wear – sensory issue). And the bike was bright red and gorgeous. Perfect.
The PT said, “Now take the bike into the gym for the celebration.”
And I said, “No, sorry, we already discussed this with the coordinator and we are opting out. However, we are very grateful for the bike.”
She said, “Why?”
I explained why.
And she shook her head and made an annoying TSK sound. Guess what we did?
We had our picture taken and we left.
Could I have addressed it? Absolutely. I could have explained myself again. But, you know what?
I DON’T HAVE TO.
And I was tired. And I had been up since 3 AM. And none of these people were going to handle the fallout if I let them bully me into doing what they wanted Kai to do (which I understood was a celebration for their student’s fundraising efforts but not in Kai’s best interest).
So, we let Kai stay on the bike and he rode it out into the empty parking lot while I steered. It was a beautiful, cool, overcast day. Calm and quiet. And our incredible, amazing son spent a half hour riding around while we filmed it for Facebook, live, so that everyone and their grandfather could see his beautiful, amazing face light up while he rode his bike.
And that was a celebration ride on Kai’s terms.
A car trip and a nap soon followed. For Mommy.
Later that evening I received a series of text messages from the Mom that I made friends with at the event. She commented that it had been smart for us to opt out. Because half of the kids (including her own two year old son) were PETRIFIED and had meltdowns. It took a long time for her son to calm down and he spent that time in her lap, shaking, with a pacifier. Had it been our son, he most likely would have thrown himself on the floor, screamed and cried, overwhelmed and unable to function. Frightened beyond belief by the noise, the people and most of all, the high ceiling. And he is a heck of a lot bigger and heavier than her two year-old.
I feel so badly for those kids. And the families who had to deal with the aftermath.
It is our job as special needs parents to look out for number one – our child with special needs. And, sometimes, other people are going to be unhappy with us. It may mean anger, disappointment, sharp words and more coming our way. But when I think about what could have happened and how Kai was able to celebrate on his own terms, it was worth it.
For me, it’s always worth it.
Don’t be afraid to stand up for what your child needs. It is not your job for everyone to like you. You’ve got this.
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