I do not have a child with a disability. When I began working for Family to Family Network, I was surprised to learn that children do not always get the school services or community supports they need.
I have a cousin whose child with cerebral palsy was always involved in school, church, and community activities. In high school, he was recruited by the girls’ basketball team as their public relations manager. Neal was a valued team member and he and his parents never missed a home game!
I thought it was like this for every child with a disability.
Neal opened opportunities for himself with his “triple-dimpled smile” and sweet nature. Only later did I begin to realize how Neal’s success was also due to the tremendous support of his family. From the time he was a small child, Neal’s parents worked hard to ensure that he had access to services and opportunities for inclusion.
Now that I work with families, I see how important it is for parents to advocate for their children. I realize how important it is for children to advocate for themselves and what a difference it can make. Even young children can learn to let others know what is important to them, what their dreams are, and what they need to reach their goals. For children to succeed and get what they need to be a part of the community, parents need to advocate for them and, if they are able, teach the child how to advocate for themselves.
There are many good advocacy resources for families. Here are some resources that we, at FFN, recommend:
You can find more advocacy groups and resources in your area by using the Navigate Life Texas search tool.
Always remember: You are your child’s leading and most valuable advocate!
Deciding to put your child on a medication is a tough decision. But a change in perspective helped our family with their decision.
We have all found ourselves, at one point or another, comparing our child or our situation to another. The grass is always greener and you want what you can’t have—all phrases we have heard. Sometimes we must remind ourselves that we are all doing the best we can and we need to support one another and focus on the similarities, not the differences.
With every passing year in the world of being a parent of a child with special health care needs, you have the day to day struggles, the fun holidays, and some surprises. Good and bad.