As a person with cerebral palsy, my parents had to learn how to raise me, with little instruction. I now advocate for people with CP and other neurological disorders that occasionally prevent them from interacting with the rest of the world in, shall we say, the ‘typical’ way. I believe I can offer much hope to parents with a child like me, who are looking down a long road littered with obstacles:
Obstacle #1: Self-doubt
You will be faced with the notion that you simply ‘can’t do it’ – can’t love and can’t care for the profoundly or even the minimally challenged child. But from the first moments when you hold your infant, you will find an internal strength that will power you to do battle with disability.
Obstacle #2: The medical community
When a medical team brings a child with disability into the world, they must see, listen and hear what that child is communicating, even if not a single sound is uttered. Once they understand those subtle cues, they can guide you through the various processes of decision-making on behalf of your child.
Obstacle #3: Coming home
The cost of care, services, devices, aids – the list of ‘stuff’ required to keep a single disabled child alive and healthy – is seemingly endless. Enter the insurance industry. Dealing with health insurance representatives can suck the life out of parents who are already taxed beyond all endurance. But when you get a plan in place, your child’s needs for blocks of time are established and you can relax, at least for a while, knowing that you don’t have to jump through hoops for the bureaucrats. The pattern is repeated year after year, with infant and toddler services in place – day care, nursery school, kindergarten, then ‘big kid’ school. No matter the disability, even the profoundly disabled child has an awareness of himself, though some may never be able to articulate it.
Obstacle #4: School
Your child will start grade school and will personally face obstacles while you deal with the ‘system’ – your Board of Education, principals and classroom teachers. Children can be cruel, but that cruelty is learned behaviour, sometimes learned in their own home. Parents of able-bodied children need to allow their so-called ‘normal’ child to explore the world of a child who is not like them. Bit by bit, bonds form between the haves and the have-nots. How adults respond to these blossoming social connections will determine how both the ‘able’ and the ‘disabled’ fare in the long-term. Your child’s presence will help other children demonstrate empathy and lose any fear of a classmate who drools, flaps his arms, or flails his legs uncontrollably. Classmates will learn to look beyond those physical limitations and see the smile on your child’s face. If your child cannot smile, then encourage others to make skin-to-skin contact. In reaching out, the healthy child will be free of their own self-created obstacles.
Obstacle #5: Graduation
Grade 1 is over and your child and his or her classmates will move on together. Grade 6! Grade 12! Hurdles will topple along the way. The last obstacle may be how your child – who never spoke a single word for 12 years of schooling and will never in life speak a word – will somehow deliver the Valedictory address to fellow graduates and students, faculty and parents. Which of his friends will guide his chair to the platform? They will jockey for the privilege.
It really will be a privilege because each of them will have made this happen for your child, just as much as he made it happen for himself. After travelling those 12 years with him they will have learned more about themselves than books will ever teach them. They will have learned that their attitude about him and his differentness wasn’t an obstacle; they all will share in the joy of his personal achievement.
Modern technology will come to the rescue – laser pointer assistance at a computer will draft the valedictory address, and text-to-speech software will ‘speak’ to those assembled for what will be the first of many achievements for your child. His address will be a testament to the will to overcome obstacles in spite of, or perhaps because of them; a testament to a joy found in even the smallest things – whether it be an eye blink to acknowledge happy feelings, or the twitch of a thumb to acknowledge a touch on the skin.
Obstacle #6: Life
Staring at your little child today with so many obstacles ahead of him, it may be hard to dream of the next step – post-secondary education and a career. The only perceptible obstacle will be how his coworker keeps flirtatiously stealing his parking spot. Rumour has it that she’s had her eye on him for a very long time. There are no real obstacles to true love! The ultimate objective is to finally lay eyes on the parking spot thief and invite her out for dinner.
Carla MacInnis Rockwell is a freelance writer and disability rights advocate in Fredericton, N.B. She is an avid reader, Scrabble addict and servant to a tenacious terrier. Check out her website Carla’s Place.
Originally published in ParentsCanada, April 2012