Families of children with spinal muscular atrophy may become experts in their child’s care. Between mastering a complex array of medical equipment, making home modifications, and customising everyday items, caregivers do whatever it takes, with the goal of getting the child everything he or she needs.
With such a firm understanding of the needs of individuals with spinal muscular atrophy, who better to offer insight than caregivers themselves? This section will include practical tips and suggestions for daily solutions from the experiences of real caregivers.
The information in this section is based on opinions and experiences compiled from parents and caregivers of children with spinal muscular atrophy and should not be relied on as an alternative to medical advice from a healthcare professional.
Activities and Adaptations
Activities and Adaptations
“Lots of stretching and reaching and carrying. It’s every little day-to-day thing you do─our goal is to set her up for when she’s on her own. She clears her bowl from the table─it’s heavy for her but that’s therapy. Lifting and holding and carrying; it’s all those little things.”
“We use foam batting from a craft store to adjust the depth or height of a wheelchair seat. We have been able to purchase a slightly larger chair that our son can “grow into” just by adding more padding behind his back so he scoots forward more.”
“We adapt and find a new normal. We don’t let her know she is different─she is one of us and she’ll do what we all do. When we’re doing things like drawing or colouring at the table, we use tape to keep the paper in place and make it easier for her to use.”
“Local adaptive equipment lending libraries are hidden gems! They charge little to nothing for their services, and often have much of the equipment you need (wheelchairs, adaptive toilet seats, adaptive swings, etc).”
“Crayons and pencils are okay, but with markers, sometimes it’s hard for her to pull the caps off. So I checked every single brand of marker until I found ones with caps that come off very easily.”
“She has 30 different decorated golf balls that have a drilled hole in them. We swap her joystick knobs out with different themes for special occasions or just for fun.”
“We keep a cup and a small basin in the bathroom where our daughter brushes her teeth. This way, she can brush her teeth while sitting down and we just rinse out the basin. This saves our backs because we aren’t trying to hold her up to the sink, and is safer for her as well.”
“We purchased an inexpensive lap desk so the kids could easily sit on the floor (without any fear of falling off a chair or couch) and have a hard surface to write or play on. If we put on knee immobilisers while they sit on the floor with their legs stretched straight in front of them, it becomes a therapeutic activity too.”
“We try to keep her independent as much as possible. We always leave a cup in the water dispenser on the outside of the fridge door. If she’s thirsty, she can just go to the kitchen and help herself without having to worry about reaching the cabinets.”
“Homemade ice lollies are delicious and can be made with healthy ingredients. Kids can take bites or suck on them, depending on what they are comfortable with. We fill shop-bought ice lolly moulds with blended up strawberries, peeled orange slices, ice, and water. An easy, healthy snack!”
“Smoothies are our best friends! We add all sorts of nutrients to them, including supplements. They are easy to drink and nutritious.”
“As much as has been possible, we’ve switched from carpet to some type of hard, smooth flooring throughout the house. Not only does it remove friction issues and make it easier for our kids to get around, but also it’s easier to clean when their sometimes-messy wheels roam around the house! We’ve put in some area rugs and play mats so they still have a soft spot to play on the floor without having to worry about them falling over and hitting their head on a hard floor.”
“We have left our formal living room basically completely open. We have looked for furniture, but just haven’t found the right pieces that would still allow the kids to stay active on their various wheeled devices. It’s a simple adaptation of using a room for a different purpose, but it works for us as the kids have plenty of wide-open spaces to move around.”
“We changed the bathroom sinks for her wheelchair to be able to access, and added a tap with a longer arm so that her hands can reach right under the tap.”
Assistive technology and equipment may help to maximise independence and optimise care.
The following is a list of equipment to help you get familiar with some of what is available. Please note that this is not a comprehensive list. Be sure to speak with your care team to determine what may be helpful for your child.
An adaptive pushchair offers a lighter and more portable alternative to wheelchairs and can be loaded in and out of a vehicle more easily. They can be equipped with accessories that help with comfortable positioning and posture. Pushchairs are often used before a child is big enough for a wheelchair. Be sure to check with your insurance carrier to determine the details of your particular coverage.
Cough assist machine
A cough assist machine helps to produce a more productive cough by gradually applying air into the lungs on inhale and quickly reversing the flow on exhale to push secretions out to be removed from the mouth with a suction machine.
A pulse oximeter measures the percentage of oxygen in the blood by using a small clip or tape with a sensor placed on a finger or toe. Children with spinal muscular atrophy may need extra breathing support, particularly while sleeping, if their oxygen levels drop too low.
There are many different types of wheelchairs, both manual and power. Manual wheelchairs can be controlled from the chair or pushed by a caregiver. Power chairs are controlled electronically, typically by a joystick, enabling mobility without help from others. If muscle strength or control is an issue, joystick placement can be modified and adapted to fit the patient’s needs.
Bilevel positive airway pressure (BiPAP) machine
A BiPAP machine provides a high volume of air into the lungs during inhalation, inflating the lungs greater than what an individual with spinal muscular atrophy may do on their own. On exhalation, the machine lowers its pressure to allow for a more normal breathing pattern.1
A car bed allows children to lie down more comfortably while travelling in a car. These beds are recommended over a traditional car seat, especially for children with more severe types of spinal muscular atrophy who may be at risk of apnoea or oxygen desaturation. Be sure to speak with your care team to determine what may be helpful for your child.
Children who are unable to stand independently can be helped into a standing position through a stander. Standing puts weight on bones, which may improve bone and muscle strength. There are standers that are stationary and some that are able to be moved (dynamic standers).
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