alt=a a mother sits across from her child, who is in a wheelchair. They are holding hands and talking.

Talking With Children Who Have SMA About Their Body

Last updated: January 2022

I remember being a child and having very bold discussions with health care providers regarding my weight. Their focus was a clinical view of my body.

Remember you cannot gain weight it will make it more difficult for you to move. Also, make sure you eat enough protein your muscles really need it.

All while being bombarded with body messages from the media on what is beautiful and yet never seeing my body represented anywhere.

The impact of weight discussions on children

This did occur twenty-plus years ago before we knew exactly what impact it would have on children. However, I think it is still relevant to this day and something that parents with children who have SMA should consider when speaking with their child and health care providers about diet and weight.

The clinical view of this is still very much alive and well in the medical world.

The emphasis on needing to remain thin

People (mainly doctors) in a position of power told me I needed to remain thin in order to remain mobile. Mobile was better than disabled.

Ultimately, a disease I would have no control over was my responsibility as a child to harness and control. I believe this has led to trauma and very disordered eating that I am still working through to this day.

I was praised for being thin often and by many. You can eat anything, you can wear anything, you’re just so small!

I may not have been able to walk like those I saw in the media but I was as thin as some of them. I deprived myself of food often and regularly. I looked like I did because I did not eat.

Progression of spinal muscular atrophy

Instead, I should have been told that my disease would progress through no fault of my own.

My body does not make a certain protein because I am missing a gene. This will cause my motor neurons to die.

Without these motor neurons, the signal from my brain to my muscles cannot get to them, causing them to weaken because they cannot move. This is the correct information and has nothing to do about weight.

Disability and empowerment

I feel parents and those with authority get hyper-focused on the child moving and walking and not being disabled. Instead of supporting them wholly... Disability, weight, and all.

This comes from systemic ableism and that the world is not kind and inclusive to those with disabilities. Taking the disabled aspect away from someone becomes a huge disservice and teaches them to hate a part of themselves that they cannot change.

I should have been empowered about my disability. Not given ableist views from people who don’t know what it is like to live with a disability.

There are now many more resources for children and teens with disabilities such as inclusive books, the ability to follow individuals online with their same disability, and support networks. Disability is also slowly showing up in mainstream media and advertising.

Hope for the next generation

It gives me hope for the next generation with SMA and their mental health. Careful conversations that consider the entire patient and more representation of individuals like them could prevent a lot of trauma.

Children are listening and understand more than you think they can. Be sure what they are hearing is not teaching them to be ashamed of who they are.

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