“As a parent to a child with significant disabilities, I have become keenly aware of the celebration of the small things, the sacredness of the quiet moments, and the power of staying in the present.” — Kayla Craig, from ‘To Light Their Way’

Merry Christmas, everyone. Whether or not you celebrate the Christian or secular version of the holiday, this is a good time of year for reflection.

I find myself reveling in the calm, quiet moments, leaning into the long darkness and welcoming the slower pace.

As I reflect this holiday season, my deepest wish is for there to be a fundamental shift in our society’s approach to disabled children. The systems we have to address their needs are disorganized, disjointed and dysfunctional. There are too many people benefiting from the systemic inefficiency and too many people blind to how it could be improved. It won’t be easy. It won’t be fast. But in this season of miracles, I may as well put forth my wishlist.

I wish:

• That no child would have to spend the holidays alone in the hospital because there was no other placement for him.

• That any parents whose child died this year find comfort, healing and strength.

• That schools get redesigned from the factory assembly-line-style education we have now to something that better fits how human brains learn.

• That parents get the support they need for their children.

• That children across the spectrum of human experience are loved and valued, exactly as they are.

• That the U.S. health care system has a revolution because none of this is working very well for anyone — patients, doctors, nurses, anyone.

• That the compassion I see, hear and feel from so many people — even perfect strangers — gets manifested in the programs that so many of them, as taxpayers, vote for and fund.

• That everyone who goes into a profession to help people with disabilities has the tools and work culture they need to accomplish great things.

• That every family — but especially those of our most vulnerable children — has the time, space and resources to feel safe, healthy and supported.

Happy holidays, dear reader, and may 2022 bring more stability to you, your family and the world.

Share

Leave a comment

Medical Motherhood’s news round up

• From Disability Scoop: “Push To Add ‘Profound Autism’ Label Gains Steam”

The term may apply to 18% to 48% of people with autism, according to the researchers.

“In our community, people are very much in support of a carveout for severe autism,” said Jill Escher, president of the National Council on Severe Autism. “As the definition becomes amorphous and muddy, their children who are among the most severely disabled people in the field of psychiatry are getting lost.”

• From The Salt Lake Tribune (Opinion): “Reaction to the death of Izzy Tichenor demonstrated how ableism is pervasive in society.”

…when opportunities are available and accessible, disabled people are valuable contributors to society. My research with disabled youth reveals that they like their lives and that impediments to their success are primarily external. Yet, my research has often been questioned by social service providers, educators and others who are surprised by the satisfaction children express.

• From Tehran Times: “Disabled children join able-bodied in Tehran music festival”

“This is the first time in Iran a group of disabled children with their able-bodied counterparts entered a musical competition,” Agahi said.

The festival was organized to demonstrate that children with such challenges as autism can compete with other people in all activities,” she added.

She also noted that the festival was intended to raise people’s awareness of the challenges facing the disabled. “If they change their views of people with autism and Down’s syndrome, this can help a person have a happier life in society,” she added.

Medical Motherhood is a weekly newsletter dedicated to the experience of raising disabled children.

Get it delivered to your inbox each Sunday morning or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you.

Follow Medical Motherhood on Facebook, Twitter or Instagram or, visit the Medical Motherhood merchandise store to get a T-shirt or mug proclaiming your status as a “medical mama” or “medical papa.”

Replies to this email go directly to me, Shasta Kearns Moore.