On the first day of class, they brought in a self-advocate. I don’t think I have ever met a person with more abbreviations after her name. Dr. Ficchi is a self-advocate who focuses on setting the bar higher for people with disabilities and her dissertation is something everyone raising a special needs child should read. It is attached at the end of this blog and there are lessons for all of us within the text.
Gaby is a twin and was born with Cerebral Palsy. Her mother chose to raise Gaby with the same expectations that she had for her twin. Upon reflection, her mother would say “I didn’t know how to raise a kid with a disability, so I just raised a kid.” Let that sink in a minute. Sometimes we get so caught up with the diagnosis that it alters what we expect of them. We lower the bar, and therefore lower the standards to which we hold them too.
When she was 14 Gaby underwent major surgery (11 total) and came out worse out than she went in. Before her surgery she could walk with a walker; when she came out she was confined to a wheelchair.
Her mother enrolled her in Camp Shake-A-Leg. It is a camp for children and teens with disabilities and they teach them how to live independently.
She said the first time she took a shower there her consoler took her into the shower, left her there and told her that she had to wash her own hair. Gaby convinced that she could do it, waited for them to return.
Every 20 minutes they would pop in-
Did you wash your hair yet?
Gaby- No.
20 minutes later-
Did you wash your hair yet?
Gaby- No.
After 2 ½ hours Gaby figured out how to wash her own hair and has ever since then.
She said the first time she got home from camp it took her 4 hours to dress herself. Today it takes her 20 minutes. But she does it. She learned how to do things on her own so that she could live independently.
I think that sometimes as moms we want to do for them because it’s faster. Maybe we need to slow down and let them do and let them get better at that task and more independent. It might take longer, it might require more planning and patience on our part but the end goal will be worth it.
Gaby says there are two things that those of us raising special needs children can do to foster independent living skills.
- Consumer control. Give them control over their lives. What does a person with a disability want? ASK THEM!
- Dignity of risk. Individuals with disabilities have the right to take risks and fail just like everyone else
I love these principles and those two statements. They have revolutionarily changed the way that I will approach my children tomorrow and for the rest of their lives. Very often we special needs parents want to put our children in a bubble. To not let them fail. To not experience pain. To not experience loss.
We are doing them a disservice.
All of us fail, experience pain, and loss and because of those experiences we become stronger people. Those with special needs have the same right to those experiences. And to the growth that people realize from those experiences.
As parents the best thing that we can do is to raise the bar- have higher expectations of them beyond their disability- learn to embrace our children for who they are, and encourage them to take risks within the community, to find their own voice, and to have a say in what they do in life.
