Equipped for Joy?
I joke that the “special needs life” comes with A LOT of accessories! But it’s true. And I don’t know what I would do without them! I remember before Caiden was given the definitive diagnosis of Spastic Quadriplegic Cerebral Palsy and we had no special equipment, we had to jimmy rig all of Caiden’s chairs and strollers with rolled up towels or small pillows to support his little uncoordinated body. It was such a blessing to finally receive equipment that fit Caiden perfectly, instead of us trying to make Caiden fit into typical gear. The best news of all was that all this equipment cost us nothing and was funded by New York’s early intervention program (check your local EI program to see what it provides). Anything that will make your life easier and bring joy to your child is worth considering! Please always consult your pediatrician and physical therapist about what piece of equipment would suit your child best.
5 pieces of equipment that save your back and bring joy:
Adaptive Stroller/Wheelchair
Getting out frequently for fresh air has been the biggest life-giving change we have made to bring us more joy. But that’s not possible if you don’t have an easy, safe and comfortable way to carry your kid around town. I’ll be honest, any product marketed as special needs adds an extra few hundred dollars to the price and can be bulky and complicated.
The first decision to make is whether an adaptive stroller or a wheelchair works best for your child. A good adaptive stroller allows easier accessibility and flexibility for travel—they are usually light-weight and can be folded compactly and stored in the trunk of your car. However, a stroller is less sturdy and less supportive than a wheelchair, yet sufficient for children would have adequate head and trunk control. That being said, Caiden primarily used an adaptive stroller (click here for more info) and his head and trunk control have never been strong—it worked for us because Caiden was small enough at the time that his strength wasn’t an issue. A special stroller is also adequate in the beginning when a diagnosis/prognosis is unclear and/or you are not ready emotionally to fit your child for a wheelchair. Trust me, I know the heartache of that decision. Adaptive strollers are a great option, but I will say, Caiden’s stroller, still being used, is on its last legs. For such an expensive item, I would have hoped for it to last longer.
Caiden got his first wheelchair, a Zippie Iris, this past year, just before turning 5. It’s compact, sturdy and super supportive, but it’s really heavy and we still don’t have a ramp accessible van to transport it. I need help transferring the chair in and out of our minivan, but it’s worth the trouble because it meets Caiden’s many needs. Its dynamic backrest suspension system allows for Caiden’s extensor reflexive movement. For now, we keep the wheelchair at school and his adaptive stroller in the minivan to use it for everyday appointments.
Activity Chair
This special chair is meant to replace a high chair and is used for feeding, table play, learning, and anything you can think of! Caiden has a Rifton Activity Chair and is easily his most used piece of equipment. I love it because it’s easy to use, adjustable and supports Caiden’s body from head to toe! It has all kinds of straps that can be added depending on your child’s needs. Caiden’s head and trunk control can vary throughout the day. If he is tired, he can use the chest harness but can do without it most days. This chair can even be used as a tool for exercise because it’s so sturdy!
The major drawback to the Rifton is its size and weight. It’s very bulky and takes up a lot of space in our small home. It’s not meant for transport, but I find even moving it from room to room can be cumbersome. It just barely fits through the door frames. Also, cost may be a factor depending on your insurance. I recently found out that Medicaid, in South Carolina, will not cover the cost of a wheelchair if you have an activity chair. Completely unfair if you ask me, especially considering Medicaid will not cover the huge costs of a wheelchair accessible van with ramp (which is why we must fundraise for Caiden’s Wheels). An activity chair helps not only the child but the caregiver because it adjusts in height, allowing you to easily lift and transfer your growing child in and out of the chair without breaking your back. Overall, an activity chair is a super useful for a child like Caiden, especially if you don’t have a great wheel chair and van to accommodate it. However, I’m glad we have both and Caiden has the support he needs at school and at home.
Stander
Caiden has the Leckey Stander which assists him in standing over long periods of time. Why is this piece of equipment so important? For children who cannot stand on their own, a stander allows the user to achieve the many benefits of standing such as optimal circulation, gravity for better digestion, and support to prevent contractures and loss in bone density. Most importantly, Caiden’s stander provides the weight-bearing opportunities to aid in the proper development of his hip joints. Without standing, Children are at high risk for hip dislocations. The stander also helps kids like Caiden avoid painful corrective orthopedic surgeries. For more information click here. Most importantly, it gives Caiden the chance to see and experience the world from a different vantage point, something most of us easily take for granted. This item is definitely a must-have!
Gait-trainer/walker
Caiden has always possessed the desire to walk if not quite the full ability. Despite his lack of balance and trunk strength, he vigorously attempts to walk even if horizontally. : ) To get Caiden vertical without breaking our backs we use the Rifton Pacer. This is the piece of equipment gives Caiden the most joy, by far! I only have good things to say about this walker. It gives him an outlet for all his energy and the opportunity to feel some degree of independence. If we didn’t have this walker, Caiden would not have a way to be vertical quite as much. The only draw back I’m aware of is that in the state of South Carolina, Medicaid will not cover both a Stander and a Gait-trainer, something I don’t quite understand. Nonetheless, seek the expert opinion of your child’s physical therapist to be evaluated for a gait-trainer and to choose which is best for your child. This item is worth every penny it may cost you!
Bath Chair
“Bath time is so much fun!” But, what if your 40-50lb growing child can’t independently sit up safely in the tub? Not so much fun anymore. A simple bath and shower chair will bring the fun back to bath time. Caiden has an Otter Bathing System. This seat is like a lawn chair with straps and additional flexibility to allow your child some submersion in the water. Also, an extra piece can be added to help elevate the chair so you don’t have to bend over and break your back!
Did I leave anything out? Please comment below and feel free to ask any questions.