When my daughter Claire was born, I became not just a mother, but a disability advocate. Although prenatal tests had indicated that Claire would be perfect in every way, she was instead born with a “constellation of symptoms” indicating that she would face significant challenges throughout her lifetime, although the severity of her disability was not immediately apparent.
So, instead of marveling over her newness at home, I met with a geneticist at the hospital and learned what her wide-set eyes, short fingers, and unique anatomy meant. Instead of learning how to calm a crying baby, I met with speech, physical, and occupational, therapists who hoped that with their help she could one day eat efficiently and hold her head up. These skills were more important anyway as Claire did not cry much.
I did not have time to be a doting mother. Instead, I became a case manager, organising and keeping track of numerous appointments and surgeries. I became an advocate, ensuring Claire got the best care. I became an expert in my daughter, trying to put together the pieces of how to give her the best life possible since I had never before encountered anyone quite like her.
In doing so, I met with everyone I could think of who might be able to help with her treatment and care. I wanted to help her and to understand what her life would be like. I talked to other parents of children with disabilities. I met with doctors from top children’s hospitals. I met with a developmental psychologist, therapists of every kind, and special education experts,. All were kind and knowledgeable and I kept learning.
Yet, the world of disability was new to me when Claire was born. I was navigating it on my own and thought I was doing pretty well. I followed-up on what the experts told me. I read books and went to seminars and get-togethers organised by other parents of children of disabilities.
It was not until after Claire was already a tween that I realised that in all of my efforts to seek out those who might know what was best for her, I had overlooked perhaps the best and most essential resource ― other individuals with disabilities themselves. Although Claire and I spent a lot of time around other children with disabilities, much to my embarrassment now, I had failed to talk to the only people who would be best able to tell me what Claire’s experience might be like first-hand.
The first time I realised how egregious my oversight was, came when meeting a wheelchair basketball star who cautioned me to add extra padding to Claire’s wheelchair. Although many experts had advised me about the best type of chair for Claire, no one had ever mentioned more I could be doing to make her comfortable. Another eye-opening moment came when I mentioned to a disabled acquaintance that Claire spent a lot of her time in Applied Behaviour Analysis (ABA) therapy sessions only to find that this person had been through the same program and hated every minute of it. Although I have no doubt that ABA is right for Claire, I was mortified that I had overlooked people had been through ABA themselves when making a decision.
Needless to say, I wish had reached out to others with disabilities much sooner. As well meaning as professionals who treat children with disabilities are, ultimately parents of children with disabilities need to listen to those with similar experiences to their child’s ― disabled people themselves.
How can parents like me who had no idea about to connect with the disability community start? While it’s not advisable to walk up to a disabled person in a grocery store to ask for advice, there are several ways to connect:
· Reach out for resources on independent living or other local advocacy group. There is no one better to help parents navigate the terrain of figuring out resources for a child with disabilities than those who have been there themselves.
· If your child has a named diagnosis, such as Down Syndrome, reach out to the national organisation such as the National Down Syndrome Society for their condition for guidance and information.
· Look to get involved in online communities created by and for individuals with disabilities, especially if you live in a rural area or are otherwise isolated.
· Pay attention to what disability groups staffed by people with disabilities say. Not Special Needs demonstrates, even if your child’s therapists uses the term “special needs” at every visit it may not be the preferred approach by those most affected.