Most kids don’t need help sitting. By 5 or 6 months old, most children can sit unsupported. It’s a normal developmental milestone. However, for kids with holoprosencephaly and cerebral palsy sitting is a MAJOR accomplishment, a lifetime achievement, a long, long-range goal.
If you put Cayden in a carseat or swing or other baby seat, he would just slump over, slide down & possibly even fall out of the seat. If he slumped his breathing would be compromised. If he fell, he had no motor skills at all to catch himself with his arms, hands & feet. Really, none. He would fall flat on his face.
Every piece of baby equipment we purchased, had to have a 5-point harness, to safely support Mr. C. If it didn’t have 5-point, (& even if it did) it needed a good center support to keep him from sliding down, wide supportive sides to keep him from falling sideways, and a high back, to support his head and neck. Tilt features were necessary as well, because a standard fully upright seat was much too vertical for his breathing & head support needs.
I found most Graco products were well designed to work for us. From high chair to stroller to carseat, these were usually my products of choice. The other excellent product that lasted us for years was a Fisher Price toddler rocker. This had a deep sling seat, a good 3-pt waist strap & a nice reclining feature. It also vibrated & had music so it was a hit at our house.
If I ever made the mistake of not strapping him in, even on a quick trip, I learned NOT to do that again. Once I put him in the stroller, reclined, so I didn’t use the seat strap. I was talking & walking, not very far & I hears this whimper. Cayden had slid all the way down the chair, his feet were at the ground & his head had caught him on the feeding tray! Never again did I put him in the stroller without that strap! The next stroller had a central post to keep him from falling down through! He didn’t get hurt that time, but these are the kind of situations a floppy kid with little vocalizations can get into. Its things like that, that you don’t even contemplate happening with a typical kid.
They called this type of need, full support. He couldn’t just have any old carseat, or chair, it needed to be able to support him all over. It meant he couldn’t even have just any wheelchair, he needed side supports (laterals), a seat belt, a chest harness or shoulder supports, and a pommel just so he could sit safely.
There were several expensive & uncomfortable special needs chairs that we looked into getting; popular with therapists were something called a corner chair. These were typically made of plywood, put to form a corner, to support the sides kids, and had a tray. These were meant to be an activity chair but Cayden didn’t like them at all.
By the time Cayden was around 2, he had outgrown the high chair & most of our baby gear was getting too small for his long legs. I needed someplace to safely put him while I fed, changed & dealt with Skylar, who was a newborn. Cayden was unhappy in the bed, he couldn’t sit on the couch, and he didn’t like to lay on the floor. We were not interested in a wheelchair yet; I felt the stroller was sufficient since Skylar was a newborn and I needed to use a double stroller at the time. So we were counseled to get a positioning chair with tray. So we began the process of finding a fully supportive activity chair.
We looked at several different versions, the Tumbleform chair, the corner chair, the kid something. In the end we got this high-low, hydraulic chair. The high-low feature allowed him to sit close to the floor (child height), and high for sitting at the kitchen table . It also had a tray for work or toys & was fully adjustable for growth for several years. I called it Cayden’s hi-tech office chair.
It was fully loaded with lateral supports, head support, foot rests & straps, seat belt, chest support, pommel support, and lateral leg supports. After having problems with the chest strap causing him breathing problems, we decided to add swing away shoulder supports instead. We also had to try several different head supports, because of his weak neck he needed side support, but because of his hearing aids & cochlear implant he needed it to be in a particular place or those devices would constantly fall off.
I liked this chair somewhat, but it was frightening to me sometimes. It was meant to be used as a feeding chair, but all the straps and supports were difficult to open quickly if I needed to get him out because of his gagging, coughing or vomiting. I’ve already said he couldn’t sit unstrapped. So I ended up feeding him on my lap usually anyway. For such an expensive piece of equipment, I never really felt that it met our needs.
My frustrations with this chair, along with the long time it took to go through the selection and approval process got me thinking of other options for sitting positions.
I found an old used carseat with good support, and brought it in the house. I leaned it against the sofa & it wouldn’t fall over. I could strap Cayden into the carseat, and he wasn’t going anywhere. Cayden was safe, and he was positioned properly. And it was cheap (less than $10 at a garage sale!)
We found that a standard beanbag chair was also good for Cayden. It supported him, and was easy to position him in a way he was comfortable. I could fluff it so it had a bit of a bottom support & keep him from slumping. This worked great for watching TV or just relaxing at home.
My favorite chair we had for him was a bolster chair. I really liked this chair, as it encouraged leg strength, built strength in his lateral torso, & had a tray. He was in a position similar to riding a horse, so it built on that therapy we were doing. This was an investment, but one we felt was well worth it. It was a totally different position from just sitting in a chair, & it was a good active sit that was great for playing cars, building blocks or doing schoolwork.
I also made a special supportive chair for Cayden after seeing one in a catalog that was over $500. It was a supportive foam chair for floor sitting. I decided I could make one in a similar way & that had become his favorite place to sit and watch tv in the last few months. A high back, arm supports & full side support, along with straight leg floor sitting were the benefits of this chair.
Cayden needed full support while sitting, to be comfortable and to be safe. He needed full support in all activities of his life. We all need that support in life. We all need to feel safe and secure. We can find that security, that safety, and that protection in Christ alone.
Psalm 32:7-11 (NLT) says
For You are my hiding place;
You protect me from trouble.
You surround me with songs of victory.
The Lord says,
“I will guide you along the best pathway for your life.
I will advise you and watch over you.
Do not be like a senseless horse or mule
that needs a bit and bridle to keep it under control.”
Many sorrows come to the wicked,
but unfailing love surrounds those who trust the Lord.
So rejoice in the Lord and be glad,
all you who obey him!
Shout for joy, all you whose hearts are pure!
We were learning to follow God’s lead and to patiently wait for what he had in store for us. He was guiding us along the best pathway, and many times, we saw that in waiting for His timing, a much better option would become available. Whenever we would rush the process, we would be unhappy with the choice, or wish a different decision had been made. But when we waited, we were able to ‘Rejoice!’ for it was the right, lasting choice for Cayden.
These many sitting options were just the beginning of our journey with chairs. By the time Cayden was about 3, we realized that a wheelchair would be the safest most comfortable place for Cayden to sit. But that is a story for another day…