living a well tended life... at any age

i can’t/she can: talking about disabilities

Before Noah was born, I would have described myself as someone who is highly sensitive around the subject of people with disabilities. And, being pregnant at 44 certainly put the prospect of parenting a disabled child very high on my radar.

So when Noah was born a healthy baby, I was of course happy and relieved. For a time. Because (if you’ve read my past posts) within a few years it was apparent that something was not quite right. And after almost 3 years of frustration and dead-ends a seizure put us in the hands of a neurologist, who diagnosed Noah with a rare form of epilepsy – ESES. ESES is like an electrical storm in the brain, and in the developing brain of a child it has the net effect of wiping out overnight (during sleep) whatever was learned during the day.

After several rounds of different meds failed to shut that storm down, it was the short-term use of steroids that finally put Noah in remission – where he remains today (and hopefully will do so permanently). But damage was done. The years of ESES meant that Noah was delayed across all channels – academic, physical and social. So lots of catching up to do. And the steroids caused Noah to experience mood swings, aggression and severe dysregulation.

Through intensive immersion in every kind of activity imaginable, hours of private tutoring, and moving Noah to a public school with a support program to help integrate him back into the mainstream community, he has made astounding progress. But – particularly for people who don’t know Noah’s history – he can look like an atypical kid at times. Less and less as time goes on, but I needed to decide early on how I wanted to “present” Noah to the world at large – who might not understand. This includes a LOT of sharing with new parents that I meet, and a letter sent home to every family in Noah’s second grade class, explaining Noah’s history so that: a) they would understand a bit about who this “new kid” was, and b) have some talking points to use with their own kids.

This whole experience has made me so acutely aware of how we talk to our kids about disabilities, and so I was extremely intrigued by the new documentary film, Life, Animated.

I had first learned about Owen’s story in an article I came across on-line – it is fascinating.

From the film’s website:

“Owen was a thriving three year old who suddenly and inexplicably went silent – and for years after remained unable to connect with other people or to convey his thoughts, feelings or desires.

Over time, through repeated viewings of Disney classics like THE LITTLE MERMAID and THE LION KING, Owen found useful tools to help him to understand complex social cues and to re-connect with the world around him.”

life animated

This special movie is available on iTunes and in select theaters. And for my local readers there will be a special screening on February 13th, hosted by Devereux Advanced Behavioral Health at the Pelham Picture House. The movie will be followed by a Q&A session with the family featured in the film – Ron, Cornelia and Owen Suskind.

The experts at Devereux have put together some tips to help and encourage parents to talk to their children about disabilities, and have asked me to share them with you:

Educate yourself first: There are many kinds of disorders and disabilities, and not all are visible. Learning the basics – and being comfortable with your own understanding of these differences – will make talking to your child much easier. Plus, it sets a great example for your children to model.

Use casual opportunities to start conversations: If possible, try to relate the individual with the disability to your child. For example: “Look at that! Johnny likes trains just like you do!” Asking general questions to discover what your child knows and thinks about disabilities is also an easy way to initiate a conversation. For instance: “What did you think of that part (XYZ) in the movie?” or “The character (name) was a pretty cool part of the show. He/she has XYZ disability or is in a wheelchair. Do you know anyone like (name of character)? What do you think about that?”

Provide accurate but digestible information: Depending on the age of your child, you will want to deliver information in an age-appropriate and understandable way. If your child is younger, a simple sentence or two may be enough. “His/her brain works a little differently than yours, honey. That’s okay – we’re all different and special in our own way,” or “The wheelchair David is sitting in helps him get around, just like you use your legs to walk and run.” Of course, older children can understand more detailed conversations, so you may want to research the topic together so you can both learn more.

Reassure your child: People with special needs and disabilities are human beings, just like everyone else. They feel the same feelings, have the same basic needs and didn’t choose to be different. Disabilities aren’t contagious or something that can be passed from one person to another.

Remind your child about treating others with respect: Talk to your child about the Golden Rule: “Treat others the same way you want to be treated.” It’s also critical to understand that an individual is not defined by his or her disability. For instance, use “person-first” language, such as: “Annie has autism” instead of “Annie is autistic.” Note: For a helpful article on person-first language, click here.

Take it slow: Allow your child to take some time to think about your conversation, and then follow-up later. To kick off this discussion, try saying, “Remember when we were talking about disabilities? I was wondering if you had any thoughts or questions, now that you’ve had time to think about it.”

I loved this. But I wanted to do more, and so I turned to Melissa Blake – who pens the blog So About What I Said (you may remember her from my recent “blove” post). Melissa writes about disabilities with grace, straight talk and humor, and I knew that she would have some great posts on her blog, for a more “adult-to-adult” perspective. And here’s what she’s shared!

Four Things to Never Say to Someone In a Wheelchair: If you think you’re being witty, you’re probably not…

MEMO TO MEN: 5 Disability Questions To Ask Me: I want to talk about my disability, so please don’t be shy!

International Day of Persons with Disabilities: People with disabilities want to tell their stories and it’s so important to listen to them!

MEMO TO MEN: 5 Questions to Never Ask a Woman with a Disability: Yes, I do want to talk about my disability, but make sure you choose the right questions!

Thank you so much Melissa!

I hope you’ve found this post to be helpful – and I’d love to know if you’ve seen this movie, and what you thought!

Note: I was not compensated for this post. All thoughts and opinions are – as always – completely my own.

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