Caring for someone with spinal muscular atrophy will present many challenges along the way. As your child grows, these challenges will change and you will need to be flexible and adaptable. We’ve compiled a list of some general tips to help you with some of the milestones your child will face based on information from Cure SMA.
MORE: How Is SMA Diagnosed?
There may be some initial challenges when your child first starts school, but these can be overcome with a little forethought. You may find it useful to talk to your child’s class about SMA and why your child needs a wheelchair. Explaining that your child can learn, laugh and make friends just like everyone else will help everyone quickly accept their new classmate.
As your child grows, it will be essential to modify your home to accommodate wheelchairs, special beds and other necessary specialized equipment. You will need to bear in mind that your child’s needs may change as they get older, so any modifications need to reflect this.
Many babies and toddler toys are fine for young children with SMA to play with but as they get older some toys may need adjusting to make them easier to play with. Occupational therapists can often suggest toys which are helpful for children with SMA to play with to improve coordination.
Children with SMA can participate in adaptive or modified sports events. Find out if there are any organizations in your area who cater to children with disabilities so they can take part in some new fun activities.
If your child is well enough to travel, then having SMA shouldn’t stop you from taking vacations as a family. It will just take a lot more preparation. Ensuring your accommodations are wheelchair-friendly, being able to physically take all the equipment you might need with you, and addressing the practicalities of actually getting to your destination will certainly make your planning a little more stressful. Start out with short trips to nearby destinations, where returning home if necessary won’t be too much of a problem and expand from there.
You may have to change and adapt your everyday life fairly regularly as your child grows and their demands change. Work together as a family to find solutions that suit everyone, don’t be afraid to take advice from other families who are living with disabilities.
SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
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