Cayden’s first wheelchair didn’t last very long. After we had been using it for a short time, I realized just what a blessing it was, and saw the true need for a well-fitting wheelchair. This bargain one was fine for the time being, but it was not ideal in several ways. After some time we did get approved for one specially fitted for him. It was very similar to the one we got on e-bay, but with a few small differences. We saw the need for full armrests, rather than the round swing away ones on the red chair. We also needed a tray for activities and eating. Better positioned brakes, to lock the chair down more easily (the red chair had individual brakes on each wheel, the new chair had one bar brake in the center of the back which would lock both wheels with a step of the foot.) It also had a quick release seat belt & chest strap, gently curved lateral supports & swing away foot rests.
I added on a single bar push feature, since I needed to be able to maneuver him with one hand, while pushing a stroller or holding Skylar’s hand with the other. We also ordered a folding canopy to keep him out of the sun. The new chair was equipped for the ezlock system for future use on the school bus or an adapted van. This would allow him to ride well supported in his locked down wheelchair, rather than needing to transfer him from chair to carseat, put the wheelchair in the back of the van, and repeat, several times a day.
The other features of the new blue wheelchair were a good tilt-in-space, lateral supports, nice curved head support (after the ordeal with the activity chair headrest, this was one feature I was quite particular about). Cayden picked a lovely royal blue color for the frame, and it had his name embroidered on the seat. It also had pneumatic back wheels for a more comfortable ride & anti-tilt safety features. This Quickie Zippie should have lasted for at least 3-5 years.
We did really like the new wheelchair & so did Cayden. He enjoyed sitting in it and never really complained about it. We used it for most things, eating, school, playing, shopping. It was so natural for me to rock & push him around; he went everywhere with me. When he passed, it really was a longing in my body, to have that chair to push. I actually kept his chair around the house for quite a while after he died, because I needed to see it, to push it, to rock it, to feel Cayden’s memory close to me & to gradually ease out of the habit of always having him at my side.
After we got his custom chair, we really enjoyed it. It was definitely well suited for him. But still, Cayden’s quick progress made it clear that he might be able to learn to use a power wheelchair. Once again, it was a case of us saying “Yes, he can!” while the therapists & teachers said “No, he can’t.”
In order for a child or adult to qualify for funding for a power wheelchair they have a list of qualifying factors that must be passed. These include the ability to stop and start on command. The ability to steer accurately. The ability to see where they are going, completing an obstacle course of sorts. The motor skills to steer the chair using some form of steering device: joystick, head tilt switch, 2-3 switches (for stop/start/turn). Cayden had several of these mastered but he still had to work on a few more. We practiced stop & start, green light/red light. We practiced with switches, driving his remote control cars with his SuperTalker. We tried head-tilt switches (a complete failure, this made no sense to him because of his poor head control, he would hit it randomly & we could not be sure he meant to do it.)
The problem was that I saw his desire to be more free. To have more independence as any typically developing 3 year old would want. And he was always at my side. He couldn’t run to the other room to grab a book. I had to see his need, interpret his desire & get it for him, then sit with him and read it to him, turning the pages with him. If I was busy cooking or cleaning or doing something else, he had to wait. I could see this was beginning to frustrate him.
I also could see from his cognitive progress that the ability to drive the power chair was there. But it would take a while for him to learn it, because of his poor brain-motor pathways. But until he learned it, he would not be able to even demo a power chair. Quite the Catch 22, isn’t it? I didn’t like this idea, because I felt that given the proper time and space to practice, he would be able to learn to manipulate the controls to be independent, that his desire would push through the difficulty and make it work.
So what did we do? Can you guess by now? …. Yup, I spent some time on e-bay. ; ) I think I actually found the power chair for C on the special needs exchange website. (not sure it exists anymore, but it was a great group to buy/sell/trade equipment that kids have outgrown). We found a used power chair a few states away at a cost that we felt was more than fair, & decided to go for it. Joey took a road trip one weekend & brought it home.
This chair was not as perfect a fit as the red chair, we knew that. But we are both crafty people & we worked on it, adapted it some and made it work, more-or-less for the time being. It was a trial, to see if we could make it work, and to see if our guess was correct that Cayden had the desire and ability to drive it safely. (We always felt our purchases were well worth it, knowing we could sell them again someday, if they didn’t work).
If you think the smiles on Cayden’s face from the first wheelchair were big, take a look at these! This was his first taste of freedom, of feeling the wind in his hair, of moving on his own desire and control. We threw a chest strap on the chair, strapped him in & let him ride. He LOVED it!
This was a great night. He was driving like a little whirling dervish, all over the place, no real direction, just enjoying making it GO! (remember that was one of his favorite words!) & trying to teach this boy to STOP!>>> well, that was not really happening. He had had enough of sitting still, waiting on someone else to move him. He wanted to GO!
This chair was a little big for him, and much too heavy to lift in and out of the van, so it was a stay-at-home, learn-to-drive-it-outside chair for a while. We needed to work on direction, aim and control before it came in the house, or before he was allowed out in public with it. I was afraid he would take off someone’s toe! This chair was HEAVY!
I also needed a way to make the steering work with his arms. He couldn’t really grasp this ball-shaped joystick, so I experimented with a variety of different options. Tennis ball, straight stick. Left Hand, Right hand. Finally I made a T-bar out of pvc pipe that worked really well for him. This was the way he was going to drive.
We got this chair for him in August 2007. Like I said earlier, we got his ECO in October 2007. So I put the power chair learning on the back burner for a bit, while we worked to get him communicating. Plus, it was getting cold, so the driveway was not a great place to practice, with his tendency to get sick. I was trying to find a place to leave the chair (like a school or church) where we could go and practice in the warmth, but hadn’t solved that problem before he died. We did do more work on it in the following months, but I am not able to find any more still pictures of his progress. (I was too busy helping him stay on the driveway!) I do have a great video of him driving the chair in January, that shows his progress & how close he was to being able to go for his evaluation.
I was actually contemplating bringing the chair inside very soon, when Cayden died. I felt he was almost ready to start learning the more subtle steering it would take in the house. The new T-bar steering method really helped him control the chair in smaller movements (rather than a hurkey-jerkey: go fast & stop, go FAST & stop, he had with the ball).
These memories are so bittersweet to me. I see and remember just how far he had come, and how much progress he was making those last few month. He was progressing so well in so many areas & our hopes & spirits were so high. That made his sudden death all the more tragic to me, and I spent the first few months thinking about what he would be doing now, how great he would be driving, or talking, or listening with all of his technology.
Maybe technically this lame child never did fully walk. But he certainly felt the wind in his hair, of his own accord. He saw this chair and fully understood what it meant for his future. One day I was reading my bible, trying to find some peace with missing my precious son. I read these words in Psalm 104 & felt that they were mean to tell me that Cayden (the He) was okay, & it gave me peace. I will close with this, and encourage you to picture his golden curls, shining in the heavenly sonlight, with a smile from ear to ear, as he rides on the wings of the wind.
Psalm 104: 1-4
Praise the Lord, my soul.
O Lord my God, you are very great;
you are clothed with splendor and majesty.
He wraps himself in light as with a garment;
he stretches out the heavens like a tent
and lays the beams of his upper chambers on their waters.
He makes the clouds his chariot
and rides on the wings of the wind.
He makes winds his messengers,
flames of fire his servants.
When Skylar was little, she used to ask us where Cayden was. We just told her, “He is in the clouds in Heaven.” This eased her 2 year old heart. She then would tell us sometimes she saw him up in the sky. So together we would imagine him up there, sitting on the edge of the clouds, just kicking his feet like kids do, watching us & saying hello. We still send him balloons every birthday, & watch until he snags them up to heaven.