When your child has a disability, all the information you are inundated with can be both a blessing and a burden. You can find the right doctors to lead you and your child to the right places to receive help, but meanwhile, you may find your whole family wondering about the future.
My parents were just like you. They have a daughter with a disability. Multiple disabilities. She doesn’t see the whole picture because of her vision loss. She bumps into walls, and her feet aren’t straight. Her cerebral palsy and vision loss make life difficult. But she knows how lucky she is to even be writing this article.
When I was born, it took a while for me to be diagnosed with any conditions because doctors thought I was just late to develop. At age one, the motoric problems my mother had been noticing from age six months finally had a label.
When I was diagnosed with my cerebral palsy in 1994, there were no early intervention centers to place me in. The centers that did exist were focused on the fragile child with a constellation of medical issues. I did not fit that description. I attended occupational therapy once a week and physical therapy twice a week. Then, my parents enrolled me in inclusive preschool when I reached the qualifying age.
I really do think I benefited from the therapy I received. If I had not received physical therapy, I might be in a wheelchair today instead of walking with assistance as I do now. I believe this has helped my cardiac and bariatric health, as well as allowed me many freedoms, including something as simple as being able to ride in any vehicle.
My advice to parents is threefold:
- Be your child’s voice for as long as is needed, and then see if you can teach them to advocate for themselves. This may mean explaining to your child why they are unique and teaching them how to be assertive without being mean. This may be challenging for the social novice or communicator, so have them try it with loved ones first before moving on to other authority figures.
- Have your son or daughter put in as much effort as they would admire in others. This goes for all areas of life–from the therapeutic to the school environment. Many children, especially young ones, are in the stage of magical thinking where the concept of time is a hard one to grasp. This may mean that your child expects results from their efforts more quickly than their capabilities allow for. Show your child that you have faith they will succeed. Acknowledge their progress however small. This will help build their self-confidence.
- Stay in the present as much as your family is able. When life becomes overwhelming, it is important to realize that the past does not have to define the present moment or anything in the future. No one has a future set in stone. Just by accepting that what is going on right now is not going to last forever may lighten the emotional load. When this happens, you may be able to think more positively, which will affect all actions for the better.
The bottom line is that you as parents are already making a difference by loving your child as they are. Whether or not your child can express their love, they will still notice all that you do.
By Melanie Reach, Intern at St. Francis Children’s Center