“Yes I Can” Starts with Coaching by Us
At some point, parents and caregivers have to cross a hard bridge: to tell a child about his disability.
Admittedly, I didn’t watch a lot of the coverage of the sports coverage from Rio this year. However, when I stumbled across the Channel 4 Rio Paralympics promotional video “We’re the Superhumans,” I cried. I promptly showed my son, Torran, and cried again. For his part, he laughed with delight at the wheelchair bound athlete flying off a ramp through the air.
Most interestingly, Torran didn’t realize, and didn’t care, that the people in the video were different from “normal.”
Torran was born three months premature. We were warned from his fifth day of life, when ultrasounds revealed significant bleeding in his brain, that he could be paralyzed. The doctors didn’t know to what extent. The news devastated us, compounded by a diagnosis of hydrocephalus a couple of weeks later. However, we plucked ourselves up and carried on through the four months of medical intervention to keep our son alive, including several warnings about the effect of his impending brain damage.
Years later, Torran received several medical and developmental diagnoses, including brain damage, bilateral sensorineural hearing loss, VP shunted hydrocephalus, cerebral palsy, and autism.
No doctor diagnosed him as inquisitive, happy, a voracious reader, and thriving.
No Age is Too Early to Explain Your “Normal”
Torran’s physical differences to neurotypical/normal kids began at birth when his grossly abnormal head size interfered with his milestones. However, babies don’t distinguish anything different between each other!
Having a child with a disability has become part of my normal life. The differences that Torran experiences become normalized to him, whether or not I tell him about his diagnoses. What he feels, and the therapies he has, is normal to him. I didn’t see why I should wait until he was much older to share with him why what we experience in our family isn’t what others go through. Instead, I started early, and reinforced the strength he had to undergo everything – tests, therapy, fittings, etc. – at such a young age.
Teaching by Osmosis
Around a year of age, Torran needed hearing aids. When he and I played in the park, kids stared at the hearing aids. Of course, we also made them bright red and zebra stripes to make them easier to find!
The kids pointed, asking, “What’s that on his head?” I simply replied, simply “You see how I have glasses to help me see? Those are hearing aids, to help him hear.” Torran later mimicked my statement, able to tell kids himself about his hearing loss. In fact, he’s very proud of his glow in the dark molds and likes to turn off the lights to show them off.
Begin With Concrete Concepts
To tell my child about disability, as it related to him, I began by using examples he understood with his senses. Torran saw pictures of himself as a newborn, in the NICU. I explained how he was teeny-tiny, using objects such as dolls and toys to give him an idea of his approximate body size. He understood that he had tubes in his nose to breathe, and in his stomach to eat. I reassured him that he was very brave, especially during “pokey-pokey” procedures.
By the age of three, Torran received a diagnosis of autism. However, that’s a tricky diagnosis to explain to a three year old. Instead, I focused on how his autism presented itself. For example, he has problems with particular sounds. First I coached him on using language to say, “I don’t like that sound,” instead of crying. This took a lot of repeat efforts, and exposure to the sound in varying volumes. As he matures, he’s better able to partner his personal reactions to sound (concrete) with the label of autism (abstract), as coached by me.
Use Age-Appropriate Language of Disability
By five years of age, Torran could tell people that he was born early, and wore hearing aids to hear better, “like glasses.” As his understanding of abstract concepts improved, I told him about his cerebral palsy. By this time he understood that he attended regular physiotherapy, wore leg braces for “balance,” and went to “exercises in a special gym.” As I mentioned before, with physio since birth, it was a normal part of his life.
As much as I tried to get his busy little body to slow down, I couldn’t fight his natural exuberance. He fell over a lot. Instead, I told Torran that he was a bit more wobbly than other kids. When his knowledge of the body grew, my language evolved to, “You brain doesn’t talk to your muscles properly all the time.” Now, at the age of eight, if you ask him why he has to slow down on the stairs and hold the railing, he can say it is for safety because he has cerebral palsy.
Encourage Peer-Bonding with Other Children with Disabilities
In the NICU we befriended another family with twin boys, one of whom has hearing loss. We’re lucky that they live close by. Our children have grown up and are able to identify something of themselves in each other. In fact, the son with hearing aids refused to wear them at first, until he saw Torran wearing his own!
Several times I’ve spoken with youth and adults who say that they felt isolated without having someone with similar disability challenges as they were growing up. On a recent holiday, a young woman in her early 20s intentionally sought Torran out after seeing his hearing aids. She wore hearing aids as well. The young woman told him that, “Not everyone gets to wear [hearing aids]. Only special people like you and I get to. You are a very special little boy. Don’t let anyone tell you different.” She confided that she never had friends or role models with hearing aids in her youth. If she could have spend the rest of her trip being Torran’s hero, I believe she would have. She’s definitely mine!
We read books like Clever Carter, and The Autism Acceptance Book, to help Torran understand himself.
Understanding His Diagnosis Gives Your Child the Scope for Self-Advocacy
This year Torran has a special needs assistant who has never worked with a child with leg braces or hearing aids. He’s been at this school for four years, but I have to reteach her of all the things related to him. It’s a pain, but it has to be done. However, at the age of 8, Torran is old enough to tell teachers when he can’t hear properly, or when he has problems focusing on his work (if he so chooses to tell them). I feel that the earlier I give him the tools to dialogue, the better at it he will be during those more challenging years when I’m not present to help him interact with other kids in the school yard.
Get Your Community Involved
Before I became a parent, I didn’t do much to enable the lives of people with disabilities. Sure, I held doors open for people with wheelchairs or mobility issues, but I didn’t initiate protests for barrier-free buildings. I had a vague idea about how to talk to someone with hearing aids, even though I worked in health care.
I didn’t know any better. My life was ignorantly ableist.
If you want to feel more comfortable about talking to your child about disability, consider involving the community within which your child lives. Do they know about your child’s diagnosis and how they can help your child integrate? Torran participates in a program in which children with autism buddy up with those who do not. The program helps him establish friendships within the school environment that he might otherwise have difficulty finding.
Torran started Cub Scouts this year. I’ll be asking the Scout leaders to allow Torran and I an opportunity to talk to the kids about him and his diagnoses. Of course, if Torran didn’t know about himself, how can I expect other people to learn about him, and accept him?
Parenting a child with special needs, or who is medically fragile, is difficult. Sometimes, even simple suggestions like these are monumentally hard. Language and cultural barriers present big challenges. However, I firmly believe that children with disabilities have the right to know that they are not less for being different. I do not think my child can accomplish this until he comprehends what makes him him.