Cayden needed full support to sit. & that meant everywhere. Can you think of places I haven’t mentioned yet that sitting might be a challenge?
For those not in the realm of Special needs kids, there are special things for EVERYTHING! the ones you don’t even think about are often the hardest. Bathtime, toilet time, bedtime.
Yes, we had a special devices for bathing. I had a super find of a blow-up baby bath tub that fit right into the big tub. It was soft, had a high back & actually worked very well for our floppy kid. Until his legs got too long.
Once he outgrew that, it became something else to research and learn, and unfortunately I picked (or was steered) wrong on this one. We got the Manatee bath chair, which was a fully adjustable fully supportive bathing seat. It had straps, lateral supports, a tilt-able back & leg supports, and adjustable height legs.
The main problems with this chair was that you had to fill the tub super high in order to cover his body when he was in the chair. And you still had to kneel or get down to bathe him. And it took almost the whole length of the tub. This wasn’t a big problem, but he was 3 and his sister was 1 and we usually tried to bathe them together so they could play. She didn’t have a lot of room.
This chair also had other major issues… when it got wet it was very difficult to adjust. Yes, you read that correctly. A bath chair, didn’t work properly when wet. I actually had to bring this chair to the distributor to have them try to adjust it for us, and they had a hard time, acknowledging that it was a poor design. But did that matter? NO! because just like a wheelchair, the timeline you have to get a new piece of DME of the same category is 3-5 years. So we were stuck with a poorly designed, hardly adjustable, but supposed to be adjustable bath chair for 3 years. And the material it was made of, had a tendency to get smelly if left to dry. HMMM… it gets wet almost daily. It smelled a lot. I washed the fabric, but it was so hard to put on and off, it didn’t happen very often. Just a rookie mistake on this one folks! If you are in the market for a bath chair, I truly don’t recommend the Manatee!
There are other better chairs out there, and we were looking. Some suggestions: Go for low profile if you want your child to stay warm. Plastic ‘fabric’ that will not hold moisture or smells. Easy to adjust, even when wet. No leg supports if you want another child in the tub at the same time. Shower chairs are smaller, but they don’t allow the child to stay warm, and Cayden really didn’t like the shower sensation on his body, so it was out for us. The kids are higher, so easier to wash, but seems a little unsafe in the end. Personal preference, of course, but just don’t let yourself be taken by that lovely blue (expensive) fabric chair!
We also had a specialized toilet chair. This one took me months of looking, and months of proving that indeed, Cayden was capable of learning to toilet on his own, in order to get it approved through funding and insurance. We discovered a Rifton potty chair. I liked this device. It had a variety of options for use including: clip onto the toilet, on it’s own with a catch bucket, as a full unit rolled over the toilet, or just as a step. We had the fully loaded model, of course, tilting high back, straps, seat belt, laterals, armrests, foot rest, tray. Yes, they even make an activity tray for the toilet seat. & we had it because of C’s need to push with his arms gave him stability in sitting (& doing those toilet duties).
Cayden was actually making progress in this area. It was a challenge, yes, because of his constipation and digestive issues. Often he had a hard time getting the job done. But he was starting to indicate when he was ready to try & was making good steps towards being trained. That was a big deal! He hated being diapered & really wanted to be independent in that area. The work on transferring was paying off, and we were beginning to see positive outcomes!
The thing most people don’t think about is this: these were excellent devices for using at home. But what happens when you travel? or go to the hospital? How do you give your child a bath, or help them use the toilet? Do you take all this stuff with you? As much as things are foldable or portable, there is still too much to take on a trip. Along with the necessities like the wheelchair, the bed positioning pillow, the nebulizer, diapers, wipes, meds, etc. Packing was a pain! So you just usually tried not to go places because inevitably you would forget something important, the kid would get sick, and end up needing to go to a doctor. Sigh. Just not worth the effort.
We didn’t often get away for fun with Cayden, we did enough driving to doctors, therapists & hospitals that fun was a weekend staying home. I drove all the time and packed for the day usually, for at least Cayden, and then Skylar too. We would sometimes stay with friends on our trips to Raleigh, which called for an overnight, but a pack & play and a stroller worked okay back then. The older Cayden got and the more gear he had, the less we seemed to get out.
But really, staying home, then and now, is a blessing. We spend so much time, running from thing to thing that it is difficult to just be calm and sit. Our society is so go-go-go that a day of rest is really hard to come by. Jesus gives us the answer in Matthew 11:28-30, as he is talking to the public.
“Are you tired? Worn out? Burned out on religion? Come to me. Get away with me and you’ll recover your life. I’ll show you how to take a real rest. Walk with me and work with me—watch how I do it. Learn the unforced rhythms of grace. I won’t lay anything heavy or ill-fitting on you. Keep company with me and you’ll learn to live freely and lightly.”
We can learn much from his words, as we realize that true rest only comes when we walk with Christ, rest in Him, and live in His company daily. He teaches us what is important and what should be released. What we need to stress about, and what we need to let Him conquer. So much of Cayden’s life was out of our control, so we learned that we needed to rest in Him, for Cayden, and trust that His plan was great, and it would be for good. We learned that little things are what matter, the cuddling, the reading, the playing together. And we learned to lay our cares on Him. I hope you too can find the real rest that Jesus brings, because we know that while the kids are young, sleep is hard to come by.
More about sleep (or our lack thereof) tomorrow.