Some children’s disabilities are easier for the outside world to see than others.
Our 2 sons are a good example. While both have mild cerebral palsy and both had strokes when they were still babies, their disabilities are very different.
Michael is 33 years old, has life-threatening seizures, is mobile and nonverbal, and has a severe cognitive disability. He’s required 24-hour care since birth. We gave him this care until he moved into his own house with other caregivers a few years ago. Caring for him has been physically demanding, and there were times where it took a lot of creativity just to get him dressed in the morning.
Everyone who sees Michael knows that he has a disability – he has a visible disability. When he does the things he loves – like hugging, riding his bicycle, or painting – most people are ready to celebrate these abilities and encourage him. He knows what he is good at, and often gives people his infectious smile when he’s doing well.
Tim, on the other hand, is 29 years old with learning disabilities. But he’s a genius when it comes to history. He seems like a typical kid, unless you look closely. Most people don’t notice when they first meet him that he might walk slowly, or that his speech is somewhat delayed.
We call Tim’s disabilities “invisible disabilities.” It’s hard for people to see them, so people might not know what to expect or to make accommodations for him. This can make it harder to get help. Programs are usually designed for people with obvious or visible disabilities, but the person like Tim might get overlooked because their need for supports doesn't jump out at anyone.
For example, Tim had a job for awhile and met most of the job expectations, but he struggled with certain tasks and details. No one gave him extra time or accommodations that would have helped, and no one saw the subtle or occasional ways in which he needed assistance, and so he lost the job.
This lack of support can start early. Teachers who don’t know any better might expect students with learning disabilities to do the same work as their peers. When these students don’t meet expectations, they’re accused of not trying or being lazy. And other students might not know how to react to invisible disabilities, either, so they tease, bully or just exclude a child. Being treated this way is often frustrating, hurtful, and really damaging to a child’s self-esteem.
When your child has an invisible disability, it’s also a struggle to sort through all the advice you get – the advice you ask for and the advice you get even if you didn’t ask. Sometimes well-meaning friends, family members, professionals, or even complete strangers see your child’s behavior without understanding their disability and offer advice that just doesn’t match their needs.
For example, we know one mother whose daughter, Jasmine, has attention deficit hyperactivity disorder (ADHD) and sensory processing disorder. When you meet Jasmine, she seems like a dreamy, smart, and otherwise typical girl. But in the 4th grade, Jasmine was having trouble hearing her body’s signals that told her when to go to the bathroom. And despite agreeing to a schedule and getting support from her teacher, she was still barely making it in time. After the third time in a month of bringing a change of clothes to school, Jasmine’s mom was ready to cry with frustration. She asked the school nurse for help. The nurse said they should put more consequences in place to help Jasmine understand the importance of going to the bathroom.
But Jasmine’s mom knew her daughter understood the importance, and consequences weren’t going to help her hear her body’s signals or remember a schedule. They were only going to make her feel even worse about herself than she already did. Instead, Jasmine's occupational therapist helped her mom and teacher come up with more interesting schedule reminders and helped Jasmine better understand her body’s cues.
The first way to support your child is to learn as much as you can about their disability – whether it is visible or invisible – and help them learn as much as they can about it too. The next step is to work with them to figure out what they might need to do to adapt. This might involve medical equipment, assistive devices or technology, behavioral support or education and school accommodations. And finally, there’s advocacy. When your child is still young, you will have to be their primary advocate to get their needs met. But as they get older, you can help them learn how to ask for what they need for themselves as much as they are able.
Building up the courage to ask for what they need, and then getting it, can give your child an early taste of success. And hopefully it puts them on the path for more successes – and more infectious smiles like the ones Michael gives us.
Palliative care is about making the most out of life while supporting complex patients and their family. I am so glad we found them.
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