A Proud Moment For Local Mom, Son
22/10/2008 00:47
Don,
A heartening moment to share amongst those who have kindly supported our daughter and thus, our family unit. A few pictures of 13 year old, Daniel, at the medical conference we participated in along with a copy his speech.
We had a crowd of guests comprised of persons from British Columbia to Newfoundland as well as a speaker from the United States. I have been a Council member for the hospital since its inauguration in 2005 and I was asked to provide the greetings and an update into rehabilatative health care trends.
Our son, Daniel, was invited to participate on the panel as a speaker on behalf of siblings of children with disabilities. Daniel discussed both his siblings and their conditions, including ASD and the syndrome tetrasomy 18p. The crowd was highly receptive! It is heartening to see Family-Centred Care becoming prioritized in health practice!
Can you tell that I am a proud mom?
Velvet Martin
Here is the text of Daniel’s speech:
Good-afternoon, my name is Daniel Martin, I am 13 years old and in grade 9. I am interested in athletics. I might become an elementary teacher one day, but I'm also thinking about police work and the trades like my dad and grandfather. I am here to speak with you on the subject of being a sibling of persons with disabilities and its impact on my life. Having a brother and sister with a disability affected me at times because I have had to stick up for them. Sometimes problems that arise are like when my friends laugh at some of the embarrassing things my brother does. When somebody I know does stuff like make fun of or laugh at a person with disabilities, I don't join in, I tell them to leave the person alone or try to change the subject.
My sister's disability was a chromosome disorder so it was very visible to others. Samantha wasn't made fun of as much because people knew she had problems, but my brother's disability is not as plain. He has a minor form of Autism – our doctor calls it Aspergers-like – so sometimes he is made fun of because people are oblivious that he has a disorder. He doesn't look any different, but at times he doesn't act his age. One time I got hurt defending him and had to go to the hospital. Some older kids were picking on my brother and I stood up to them and ended up with a concussion. Sometimes it's hard even for me to remember that he is not doing things to bug me on purpose.
I don't mind when people ask questions about disabilities. I did a science fair project about my sister's disability and lots of people asked what her chromosome disorder meant for her and what kind of problems she had. It is called tetrasomy 18p so that means she had too much chromosome material: An extra half of the top part of chromosome 18. For Sam, it meant that she couldn't speak very well, she needed lots of attention, she had small ears and facial features and she was missing a crease in her palm – it is called a “simian crease”. Samantha had other difficulties so she needed supervision for the washroom and stairs. Otherwise, she was just like a “normal” sister. She liked to play with us, but she also enjoyed annoying us.
Some of the things that have helped are having support groups that help people with disabilities like Transitions Rehabilitation Agency. They help teach others that everyone is an important individual no matter how different they look or act on the outside. They hire people to do respite so that sometimes my brother or sister could do things with an aide. A lot of my parent's time is needed for my brother and sister. So, the agency does fun things like give tickets to events; not just for my siblings with a disability, but sometimes for the whole family to enjoy together.
Things that hurt are like when our family was not supported. It is difficult to have a brother or sister with a disability because it costs a lot of money for things that most other people don't need, like diapers, special clothes or shoes and babysitters for older people. What happened to my family was really unfair: My mom & dad were told that they could not have support for my sister when she was born unless she lived in foster care. Parents should get the same help for their own children so that they can stay at home with their family who really love them. Things are getting better now. My mom was able to get a family law changed for kids with disabilities like my sister so that now when families ask for help, they do not have to give up rights.
When people ask questions, they get to know the person and what kind of problems they have. Then, they are not afraid or wonder why they do some things differently. Like why my sister didn't talk much. It was just the way things are. Like having blue eyes or brown eyes.
My little brother, Alex was 8, when our sister died. He wrote this for her and it says a lot about how we feel: “We loved Sam very much; we are sad she had to go. Samantha was a good sister. She might have pulled my hair, but I will always love her forever. She will always be in my heart. We loved playing with you very much. We loved your crazy laugh. We loved when you stuck out your bottom lip and pouted. You are very beautiful, Samantha, and if you grow up, I bet a big man would think so too. I loved it when you said my name in sign language. You were so kind to us all.” It is the good things that we remember. Things that other people who don't know someone with a disability might not know. People with a disability are just the same as you and me and they feel love and they are loved.
Thank you,
Daniel 10-13-2008
SINC SAYS:
Take a bow Daniel, for a job well done. Congratulations.