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Thinking Outside the Box to Support My Son With Spinal Muscular Atrophy

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When a person is newly diagnosed with a disability themselves, or becomes a caretaker to a loved one with a disability, they often quickly discover how inaccessible the world around them really is. In regards to dealing with the needs of a young child with a disability, finding ways for my son to participate in holiday activities (e.g., Easter Egg Hunts) has been a real challenge over the years. However, as the saying goes, “If there is a will, there is a way.”

Lori's son enjoying an Easter egg hunt with balloons.

An unexpected bonus to having to adapt activities to meet my son’s needs, due to him having spinal muscular atrophy (SMA), is that it has taught me how to think outside the box to come up with workable solutions. Having to constantly modify the world around us so my son can access it has also made me more aware of, and sensitive to, the needs of others. I’d like to think that knowledge has helped me to become a more accepting and compassionate human being overall.

Please be encouraged that even though managing a disability can be hard, it does not mean life is no longer worth living. There is value to be gained from the struggle, and joy to be experienced in overcoming obstacles.

Originally published: August 9, 2020
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