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6 Things That Have Helped Me Grow As Parent of Kids With Disabilities

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Every year around my middle son’s birthday, I can’t help but reflect on his diagnosis of spinal muscular atrophy and his 1st birthday (which fell a little over a week after we got the news). As each year has moved forward, it’s become clear that his life, by all accounts, is pretty awesome. The painful emotions I wrestled with in those early weeks and months following his diagnosis, while easily recalled, are now a part of my past, not present. But in retrospect, I now see what made this growth possible for me.

I wanted to share six things that helped me in my journey as a parent of children with a disabilities, and continue to provide support.

1. Connecting with national charities and support groups related to my child’s condition.

For me, that’s the MDA and CureSMA. Groups at a national level usually can help pass along information about important legislation, treatment, drug trials and standards of care that local doctors might not know about. Their fundraising helps fund new studies and programs that directly benefit member families (like MDA camp). National organizations usually put out publications and regular correspondence that keep families in the loop. If your child has a rare disease, it’s good to know there’s other families like yours out there somewhere, even if it’s not your backyard. They’re a good first place to look to make connections.

2. Connecting with local charities, organizations and support groups.

Personally, I’m connected with the MDA locally as well, and I’ve been working with my son’s nursing agency to help build up a local support network for medically fragile families. There’s also opportunities through his school to connect with other parents, and we’ll continue to participate in Challenger Sports. These groups might not be disease specific, but bring together people locally who can still relate to the challenges of parenting a child with disabilities. If you want to know about state programs, local opportunities, etc. these are your go to folks.

3. Reaching out to other parents directly on social media.

Once I found one contact, I simply asked to be put in touch with other families and within a short amount of time I found another homeschooling mother with two boys with SMA, and numerous other moms I could message with my questions and concerns. It may seem strange to message strangers out of the blue, but when your children share the same diagnosis, you’ll find it much easier to introduce yourself and immediately launch into detailed medical histories. At the same time I was messaging people, I also joined several SMA groups on Facebook. Depending on your child’s diagnosis, you might not be able to travel, so asking questions online quickly becomes an easy way to learn and meet new people. Joining the community on The Mighty was the next step for me, and it’s been another great way to connect with parents.

4. Reading blogs and websites by people with SMA, and other adults living with various disabilities.

I learn as much from disabled adults, and sometimes more, than from other parents of kids with disabilities. I’ve learned how I need to better advocate for my sons, and help them thrive in an ableist society. And most importantly, I learned that disabled people are happy and not spending all their time wishing they weren’t disabled. My sons don’t need to be cured to live happy, fulfilling lives, and there’s a lot of peace and freedom that comes from that realization.

5. Writing.

It’s how I work out my thoughts and feelings — whether it takes the form of blogging, journaling or scribbling down pages of random lists in order to organize my scattered thoughts. My keyboard has served as my therapist and people can read the fruits of this journey as it’s manifested itself via my blog, or here on The Mighty. Not everything has been for public consumption; however, sharing some of it, and receiving feedback, continues the growing process. I’m always humbled when my writing helps someone, and I’m sure to comment or email another blogger or writer when her words provide a virtual hug or fist-bump.

6. Making time for my marriage.

My sons require a lot of time and care, and then I have three other children who need my love and attention as well. Plus I homeschool! And the house is a mess! But my husband and I have never used any of it as an excuse to not spend time together and that’s blessed our relationship and our family. (Even when the only time we manage to be together is spent in a hospital cafeteria, or late at night after everyone is finally asleep.) A serious medical diagnosis can wreck a troubled marriage and strain even the best. But we’ve managed to survive and thrive together, all while providing for the needs of our disabled children.

Every parent will need to travel the road of disability in their own way, but hopefully, you know you don’t need to travel it alone. Find the way that suits you best to connect with those who understand your journey and can support you best.

A version of this story originally appeared on This Ain’t the Lyceum.

Originally published: October 5, 2018
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