A mother in a manual wheelchair is in the center of the image and has a child on her lap, two mothers holding children stand on either side of her

The Odd Mom Out

I had SMA type 2 and became a mother at the age of 25. I then became a mother for a second time only 20 months later. Parenting can be difficult. Being a mom in our society can be extremely difficult

Being a disabled parent

The topic of disabled parenting has been rising lately and it could not make me happier.

I love to see the confidence in other disabled parents as they share their stories.

I think it’s important for the world to see that we are great parents, and we can have great parenting advice as well!

Being a mom with other moms, despite SMA

I will say however there can often be a disconnect when it comes to socializing within the parenting realm. I remember setting up my first play date with a new mom who had a baby around the same age as mine. I had no idea what this was going to look like and had some fears about entering into this world of being a mom with other moms.

What I found to be helpful was to take the lead and take initiative on some things. Often times other people who are not disabled or have family members who are disabled just don’t know what our needs are. Being able to communicate, then, even in a simple setting such as a play date is very important.

Communication is the key

Set up the play date in a location that works best for you. I would recommend offering or suggesting places you’re comfortable in.

When my children were young, a park was not an appealing place for me simply because I could not run around on the playground assisting them when needed, however inviting people over to my home where I knew my child was comfortable, safe and familiar with their surroundings was a great option.

Also places like a children’s museum or science center was always fun. A controlled space with specific things to do while my child was in the stroller or attached to me in my chair.

Don't be afraid to ask for help

Don’t be afraid to ask for help. As you know snack time is often a topic when having play dates. It is OK to express you need help opening your child snacks.

Don’t be afraid, just communicate. I have found that the more I opened up with other moms about what my needs were, the more they were naturally inclined to jump in and help when needed. It took some learning in the beginning but after a while my new mom friends knew what to help with before I even needed to ask.

They also saw areas I was able to help, for instance, “Hey I’m gonna run to the restroom can you keep an eye on Charleigh while she’s in the highchair?” It was a great exchange but it only came after we understand where each of our strengths and weaknesses (literally) were.

More similar than different

I understand that you are going to do things different as a parent with SMA and I believe it’s a great opportunity for other moms to learn from you. It may feel odd that you have your baby strapped to your electric wheelchair, but is it really that different than the mom carrying it in their baby carrier?

Be adventurous, share your needs and don’t be afraid to let other people into your world of parenting. I think you will find you are more like than you realize.

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