People often stare and some use the word retard. Some people look away as if he is a disease that you can catch. Now, all of a sudden, it is a wonderful thing the country is willing to embrace : the down syndrome child.
I belong to a special club. We don't have a special handshake or membership cards. It is the down syndrome parent club. I joined knowing full well what the problems were. I am in the same club as George Will, Sarah Palin, and many others I do not know. Somehow this quiet part of my life has hit the public stage and given my child rock star status. I am pissed!
My republican parents were totally against my marrying a man with a mentally retarded child, they complained of the life long burden, the stress and loss of a retirement. Now they think I will register as a republican as their party represents my needs.
The lies and bullshit I read and I am told are absurd.
Most children with Down syndrome are born to older parents.
Truth: Eighty percent of children born with Down syndrome are born to women younger than 35-years-old. However, the incidence of births of children with Down syndrome increases with the age of the mother.
Down syndrome is a rare genetic disorder.
Truth: Down syndrome is the most commonly occurring genetic condition. One in every 800 to 1,000 live births is a child with Down syndrome, representing approximately 5,000 births per year in the United States alone. Today, Down syndrome affects more than 350,000 people in the United States.
Most people with Down syndrome are institutionalized.
Truth: People with Down syndrome live at home with their families and are active participants in the educational, social and recreational activities of the community. They are integrated into the regular education system, and take part in sports, camping, music, art programs and all the other activities of their communities. In addition, they are socializing with people with and without disabilities, and as adults are obtaining employment and living with family or in group homes and other independent housing arrangements.
Parents will not find community support in bringing up their child with Down syndrome.
Truth: In almost every community of the United States there are parent support groups and other community organizations directly involved in providing services to families of individuals with Down syndrome.
Adults with Down syndrome are unemployable.
Truth: Businesses are seeking young adults with Down syndrome for a variety of positions. They are being employed in small and medium sized businesses. In my community they work with other developmentally disabled adults at Home Depot, Walmart, our foodbank, Red Cross, the local hospital, and many other job sites. One adult with down syndrome here has a vending machine route that provides a modest income.
The abortion lie: 80% of Down Syndrome babies are aborted according to the republican campaign talking points.
In 1989, the rate of Down syndrome cases was 15% lower than expected, decreasing to 51% by 1998. Women 15 to 34 had 45% fewer affected pregnancies in 2001, while women 35 to 49 had 53% fewer in 2001. We estimated that Down syndrome live births decreased from 3962 in 1989 to 3654 in 2001. link
As a down syndrome parent I am involved in many positive activities for my child. I am a Special Olympics coach and class A volunteer. I would compare it to being a soccer mom to the other three kids we have raised.
So what do I do for my down syndrome child and others like him in our community?
This friday is the tip-a-cop fundraiser. The goal of the Tip-a-Cop program is to collect as many donations as possible for Special Olympics Northern California through "tips." Tip-A-Cop is a Law Enforcement fundraising event in which law enforcement officers assist with waiting tables at a restaurant and collect "tip" donations for Special Olympics. This money funds our events for the year and allows us to have a traveling team for our Special Olympics basketball team. I will be at The Northwoods Inn greeting table friday night from 4pm until 7:30pm.
October 4th is the Buddy Walk at Whalers Island in Crescent City. The Buddy Walk was established in 1995 by the National Down Syndrome Society to celebrate Down Syndrome Awareness Month in October and to promote acceptance and inclusion of people with Down syndrome.I will be at the greeters table signing up walkers and assisting with whatever is needed.
Why does any of this matter to you? Well I guess I am a community organizer for the disabled of my community. I assist with and sponsor athletic events, social events and fundraisers. My husband and I are active in the disabled community. We make sure that our community has positive activities for our family members with disabilities.
Now I am stopped by folks and family members and asked about down syndrome. They never cared before. The public spotlight on an inexperienced special needs parent has misinformed folks talking. She has promised to be a champion of special needs children yet she cut funding to the Special Olympics. She is a fraud and I am pissed. She does not represent me and a child is not a political photo op.
We are a family just like any other. We have good and bad days. We have challenges. We love and care for one another. We work hard to provide a good life for all four children. The three older boys are in college. All four boys are wonderful, fun, and different from one another. Each one of them had some special needs growing up.
If you want to know about down syndrome go here and visit the National Down Syndrome website or visit us at our fundraisers.