What is normal?
In the world of a youngster growing up with disability, what is normal varies amongst children within the parameters of deficiencies visited upon them, especially for the neurologically insulted child, such as I was when born in 1954. What must go on in the mind of the mother whose child has reached the age of 18, never walking or never speaking a single word. Unfathomable.
The 16th birthday, a particular milestone enjoyed by teenagers – messaging that they’ve ‘arrived!’ is a difficult day for the parents of young men and women, voiceless and held captive in a chair atop 4 wheels, moved with proportional control, also known as a joystick. How many hear their friends talking about getting their driver’s license, putting in extra hours at a part time job to afford a car of their own. So many things young people living with neurological disabilities may never experience. On many levels, parents do know. They live for their child. It’s often a hit and miss affair with them to overcome the fear and frustration not being able to ‘get it right’ for their son or daughter.
Soon, various grade school and university graduations will be upon us as young men and women make their way further along the path before them. While many young school age girls are off choosing just the right dress for junior or senior prom, the girl who will never walk, never dance, never speak is spending time with her Mom who is trying to find or create something that ‘works’ with the chair. Her date is not the boy who sat beside in her in homeroom but an attendant; it’s all so very clinical, and not even close to being a memory that most teenage girls would want to create. Not memories Mom and Dad want to have, either, but they do. They remember the early years, out and about with their non-walking, non-verbal child, feeling anger welling up when they’d hear other parents chastise their own children for being ‘too loud’, or ‘running too fast’; and the ‘stop that at once, or we’re going home!’. How many parents of non-verbal children wish that just once, their teenage son or daughter would scream at them in a fit of temper, a hallmark of teenagers growing up and growing into themselves?
These feelings are especially impactful for Mom because she’s the most hands-on meeting the daily needs of a child who cannot help himself. With time and various therapies, skill sets expand. How much is anyone’s guess as each child reaches milestones at on his own schedule, adapting as he grows and goes. As is sometimes the case, typical milestones will never be met, and parents and child grow old together with their son or daughter never leaving the ‘nest’.
My parents got lucky with me. I was not going to stay home and grow old with them. That wasn’t gonna happen! Thankfully, growing up with 5 brothers and 2 sisters, I spent a lot of time observing how they interacted with each other and those out in the community to effectively learn the ‘rules of the road’ with regard to how I would conduct myself. My take on the world was obviously different by virtue of, at the time, living on the fringes of inclusion. In my early school life, I wore FDR-style waist high braces and used wooden forearm crutches; then there were the glasses. I was a sight to behold!
Then, as now, there were things I would never be able to do. To fall into the muck of wishin’ and hopin’ was a waste of time. Parents/caregivers need to pay attention to what’s not said by their child with disability, possessed of ability to communicate; with non-verbal children, pay attention to an escalation of ‘bad’/atypical behaviour and ask yourself what’s going on. Have conversation with teachers and other school support staff. If your child is active in after school programs, consult with program co-ordinators. Fitting in and getting along in life is fraught with challenges that can hurt the feelings of even the toughest. But what if ‘tough’ was an act; a disguise so parents wouldn’t worry or be upset?
This year has potential to bring about many wonderful happenings for children with challenges to daily living. COVID restrictions, though not fully gone, as many have made personal choices to protect themselves, have opened the doors to a resumption of many daily activities abandoned during lockdown. Parents of fragile children must always stay vigilant but always mindful of the reality that their children, as best as they are able, have a right to be included in community life even if only in a very limited way.
Letting the community know that you’re the Mom or Dad to a youngster who requires a little extra help or maybe a lot of help to participate even minimally is a way for parents to accept that their needs must be met, too. It’s important to speak up and share your troubles. Helping hands are available and there are always ample opportunities for reciprocity. Folks just have to reach out with a freedom to be themselves and let the community get to know them.
2023 may be your year to live and grow, challenging yourself to new things, revealing more of who you are to people who may become part of your circle of life experiences. That’s always a good thing.
Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with Miss Lexie, a rambunctious Maltese and Mr. Malcolm, a boisterous Havanese. She can be reached via email at Carla MacInnis Rockwell
No comments:
Post a Comment