Your Neurodivergent Child Deserves an Inclusive World, Not Just a Sensory Oasis

Caring for atypical kids doesn’t have to involve piles of cash.

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If your child with a disability feels overwhelmed, do you want to create a bubble of comfort, softness and soothing where they can recharge? For sure!

If, along with disability, your family faces financial instability, your child may have an uphill struggle to feel safe, cozy and understood within our culture.

As a parent of an intense, high needs kid, I was excited to see the article in the The New York Times entitled ‘Outfitting a Home for a Child on the Autism Spectrum’ by Kaya Laterman.

It left a bitter taste.

Ms. Laterman describes my tribe. Parents “who have experimented with simple home design hacks to help their children cope with their sensory processing issues — where every day auditory, visual and other stimuli are experienced in a heightened way.”

The author’s thesis, “Setting one (a sensory space) up at home …need not be as elaborate or expensive.” is not borne out in the wealth laden descriptions. The photos display a lavish landscape of financial privilege.

One parent bought out a whole sensory gym for his child.

He still had space left over. For parents struggling to get by, his statement “I saved thousands” was hard to read.

Another parent built a playground inside their apartment.

I was intimidated, but I don’t begrudge those wealthy parents. We all have our strengths and challenges. I wouldn’t trade places with anyone, not even parents with the resources for $900 blinds. Reading it did make me wonder, are we missing something as a community?

The majority of comments on the article showed that, like me, many parents felt overwhelmed and further excluded after reading the NY Times article. A parent, calling themself PJ, commented:

“I am disappointed that your article is not inclusive of the reality we are experiencing in the disability world. ASD happens across different cultures and …families. I was hoping your article would include specific examples which families who are experiencing financial hardship can use as an inspiration to create those safe spaces. I was hoping your article would provide some equity aspect about including families who are living in shelters, or studio or one bedroom apartments where family members share spaces. I am pretty sure you can find families in our city willing to share their experience with you, so that you can share their perspective as well.”

-PJ

My family has a TON of financial privilege when compared to a family in a shelter. I would love to hear stories of parents who have overcome those challenges to create a cozy haven for their child.

I am even more interested in stories that show us how to make our whole culture more inclusive.

Oasis:

“Something serving as a refuge, relief, or pleasant change from what is usual, annoying, difficult, etc.”

-Random House Unabridged Dictionary

“A place or situation that is much more pleasant or peaceful than the places or situations around it.”

-Macmillan Dictionary

Do you need to deck out your home as a sensory gym in order to properly care for your atypical child?

I honestly don’t think so. In fact, I think it is important that the needs of ALL members of the family be cared for. That means not taking over the entire home with sensory equipment, unless it can be shared. I need a place to write and teach. My husband needs his ‘cave’, especially now that he’s working from home during COVID-19. I hope we will eventually socialize at home again.

We all coexist in our Brooklyn apartment.

We take into consideration the needs of the whole family when making decisions that affect us. This teaches our son about being part of a community, collaborating and compromising. It is our family’s shared oasis.

My son DOES NOT need to grow up thinking the world revolves only around him. I would prefer that he grows up thinking the world needs to change in order to meet him halfway, and we can each have a role in making those changes.

Don’t get me wrong, we bend over backwards to help him.

Many things in life are harder for our son, because this world wasn’t designed with him in mind. Our job is to help. That doesn’t involve throwing money at our problems, hoping something will stick.

What’s important is that our son feels seen and accepted in his wholeness. There are many ways to help, and none of them involve piles of cash.

Sensory integration support doesn’t need to be fancy.

We cycle through sensory tools, responding to my son’s needs as he grows. Friends and relatives have been kind to give them as gifts, and we’ve received great hand-me-downs from other special needs families.

• One year, he was given a gently used coat without buttons or snaps from a fellow parent, no questions asked. I felt so supported.
• Wearing soft hand-me-downs is more comfy for him than new clothes.
• A large cardboard box has been one of his favorite cozy nooks.
• Good old blanket forts haven’t lost their appeal.
• Sock puppets with paper wings helped us talk through the worst of his COVID-19 anxiety.

Our living room has a striped hammock swing hanging from a beam on one side, and a small trampoline on the other. These have been the anchors of his sensory support within our home.

The swing came before my son. It was a gift to me from my husband when I was pregnant. We are all soothed by the gentle swaying, and the memories woven into its fibers. We periodically switch out the swing with a rope ladder. His trampoline was a Christmas gift. It has lasted 6 years, and counting.

I have found that he uses the sensory tools more when they aren’t stuffed in his bedroom, but included out in the main area of our home.

We have given away more tools than we have now- a dizzy disc, various fidget spinners, Koosh balls, gymnastics mats, and wiggle seats. He’s gone through body socks, pop up tents and weighted blankets. All of these things were recommended by his many Occupational Therapists over the years.

It’s as much about what we don’t have, as what we do.

I try to keep clutter to a minimum. Screens are limited. It is quiet. We keep our expectations reasonable.

Nature soothes all of our nerves.

We get to the park as often as possible. I have as many plants as I can handle, to bring natural elements inside. More than I can handle, really.

Would you like one?

His chair at the dining table has a Theraband on the legs for him to kick at, but many meals we move the chair away entirely. He prefers to stand.

We have spent the coziest evenings cuddling in the swing, before carrying him to bed.

We keep things as simple and relaxing in our home as possible, especially around bedtime. He sleeps with a white noise machine, a warm night light, and blackout curtains (not the $900 variety). A blanket tacked up on the window works great in a pinch. There are free apps for white noise, if you have a device. Lots of people sleep with a fan for the sound.

Figuring out how to parent your own differently wired kids is overwhelming. I hate to say this, but it isn’t enough. The ableism isn’t going to disappear on its own, and we can’t block it out completely with fancy blinds.

How can we work together to make our world more inclusive?

What if the wealth privilege displayed in that article was directed towards changing the world that our children will eventually venture into?

If you have excess resources, consider using them to impact systemic change:

• Support politicians who are actively anti-ableist.
• Support school programs modeling true inclusion.
• Contribute to the wider disability community, those already working to make our world more inclusive and appreciative of differences.

If you, like PJ, don’t see yourself represented in the media, please keep writing and sharing your thoughts and feelings.

• Be vocal, and join organizations working to change the status quo. Vote.
• Request support.
• Demand equity. There are many fantastic nonprofits providing everything from advocacy to play spaces.
• Receive, but also know your gifts. Your voice is needed. Your contribution to our community’s future is valuable.

There’s nothing wrong with tricking out your living room to make your atypical kid happy and comfortable. They deserve it!

If you care about your child’s future, don’t stop there. We need to eventually think beyond our own family, to advocate for all the kids (and adults) who are being misunderstood, marginalized and stigmatized. If we want our children to grow up to be happy, we have to change the world so they will be fully accepted in it.

To PJ, and any parents who are struggling not only to parent your atypical kids, but also with systemic inequity:

I see you, I hear you, I need you, and I want to make a difference.

Join me at Mindfully Parenting Atypical Kids for welcoming community, and tools to build resilience to anxiety. While you’re there, download the free Mindful Meltdown Cheat Sheet.