1. Please tell me about your experiences as a child, did you find it hard socializing or making friends?
I had a lot of friends in my neighborhood that often came to the house to play with me. They had to make adaptations to the games so I could play along. If we played board games they had to move my piece for me but I told them how and when so I was still in control. If we played with dolls, I could undress them but they had to dress them. I couldn’t jump rope but could turn for them. They liked that so they got more time to jump. In school my friends also had CP. There I was very close to one girl. She could speak but was very shy and only spoke to me. If she wanted something she’d tell me and I would had to tell the teacher. I was mainstreamed in Junior high school. It was a bit harder with puberty and all. Everyone thinks they’re cool and makes fun of everyone. When they saw me laugh and make fun of myself it stopped. The older I got the more accepting classmates were. In college my disability was no longer an issue.
2. What type of care or responsibilities did your parents take on to look after you?
I needed therapy three times a week. My mom drove me to the hospital on Monday for physical therapy, Wednesday for occupational therapy and Fridays for speech therapy. (Not sure if it was in that order but you get the idea.) Other than that they were my sole caregivers.
3. Did you get any formal help?
Both my parents worked. My father was a butcher and my mother a teacher’s aide for children with Down’s syndrome. They did not have any financial help until I was getting ready to go to college. Then the government helped pay for books and the dorm. When I graduated they gave a small amount for me to have a van adapted but I first had to buy the van myself..
4. Has you're parents ever consider about a caregiver to look after you when you were small?
No, not in the home. My parents and my 13 year older sister took care of me. They didn’t even have the help of extended family members because they did not live close by. The school I went to – United Cerebral Palsy suggested I go away to camp for six weeks a year so my family had some time to relax and recharge their batteries so to speak. I was very homesick the first two years but after that I learned to be independent. It was a good thing..
5. Speech and language disorders are common in people with Cerebral Palsy, does this affect your socialization and understandment?
Yes and no. The key is taking the time to listen. People who are interested in me and what I have to say do that. Those who aren’t hang up the phone when I answer or talk to the non-disabled person as if I’m not there. One of my son’s teachers didn’t want me to help in her class because she couldn’t understand me but instead of admitting this, she said the children could not understand me. Those children knew me and understood me better than she did.
6. Did your disability, ever have an impact on your family (husband, and your child) and your extended family (aunties, grandparents etc,etc)?
It effects everyone! What you need to look at is how it effects each family member. My mom – She was the one who knew early on there was something wrong. I was not developing the way my sister did. I made her a stronger person because she had to speak up for me to get the therapy I needed. She was very protective of me as a child.
My father – did not want to admit there was something wrong and built a wall around himself. Through the Cerebral Palsy association he entered a support group for fathers. This got him very involved in my school and he learned from the other fathers how to cope. He was the one to teach my mother how to let go and not be over protective.
My sister – being 13 years older, she was my second mother. She took care of me as a baby then as a child she’d play with me (not going out with her friends – which was her own choice). When I was a teen she took me along on dates. When she got her own apartment she’d get me and I’d spend the weekend. She believed I could do whatever I wanted as long as I tried hard enough. She was the greatest person I have ever known. (she died over 9 years ago and I miss her everyday.)
My grandfather (my mother’s father) – was very sad at first. He hadn’t known what a disability was. I remember him always watching out for me when I played. He wasn’t overbearing – he’d sit on a bench in his yard or in the park and just watch. Today I swear he is my guardian angel. My son is named after him.
My grandmother (my mother’s mother) – treated me the same as all her other grandchildren. She had faith that my mother could handle raising me.
My favorite uncle (my mother’s brother) – was always amazed at my progress and treats me like one of his own meaning follow his house rules when in his house. I get my sense of humor from him. My mother’s younger brother always felt sorry for me. Something I can’t get use to. Pity has no purpose. My cousins are all my friends and have never treated me differently. My husband does not see my disability. I guess that’s why he married me. :) To him I am a “normal” wife and mother. Of course there are things he needs to help me with like cutting my food and making sandwiches for me and my son. He says he does it not because I am disabled, but because he loves me. My son was asked to draw a picture of his family when he was five. There was no wheelchair in the photo. I stood straight and tall next to his father so I’m just mom. He does know there are just things I can’t do and accepts them. He gets upset when people stare at me. He once said, “Mom, they’re staring.” I told him, “That’s because they think I’m pretty.” He liked that and now when someone stares he says, “Mom they think you’re pretty.” I think turning a negative into a positive is what my whole life has been about. These are the people who have painted the rainbows of my life!
7. What are some of the daily challenges you face?
The ignorance of others!!!! For me, my life is not a challenge, just a journey with a lot of hills and sometimes mountains but we all have that.
8. Did you ever, in your life-time as a child and a wife/parent, feel left out or unwanted at times?
Don’t we all? The key is how we deal with those feelings. Do we give up or do we begin each day a new? If I gave up I wouldn’t be where I am today BUT I could have never done it alone!