Thursday, June 10, 2010

I'll take an order of baby...hold the pity, please

(Elijah coming for a visit on Christian's last day of school)

I was startled by a thought tonight. Because there are so many societal misconceptions about Down syndrome, I think there might actually be people who pity me. HA! It's actually a fairly comical thought to me. However, when I first received news that our baby would have Down syndrome, I was devastated- that things were not what I expected, that there were a lot of scary unknowns, that my child might be at a disadvantage in life. After I had some time to adjust, and some time to meet other people who have children with an extra chromosome, I started realizing that life is not going to be much different than any other situation. There are never guarantees with children. I know people who had the typical number of chromosomes who managed to totally screw up their lives, regardless. I know children who are beautiful and typical in every way and are still a nightmare to be around. There are illnesses and medical conditions in any and every walk of life. When you think about it, do we ever get what we expect?

I got a chance to show off my baby boy, Elijah, the other day. It was Christian's last day of transition preschool (where I was in class with him) and Charles brought Elijah in at the end of the class to say 'hi'. It was really cute, because as soon as I told Christian that Elijah was there, his face lit up, "Elijah's here??!" and he ran over to where a group of his toddler friends were gathered around to see the baby. He elbowed his way into the front with a proud grin. It was only as we were leaving that I realized that one of the Moms that knew about Elijah's diagnosis had kept her distance. I actually really could care less...and she may have had a cold or been distracted or who knows what, so it was only a fleeting observation. But, it's totally possible that she pitied me, and as a result I feel a handful of pity toward her. It's not just because I think my youngest son is the sweetest baby I've met, or because he has been nothing but joy to be around so far, but because (if she did feel pity) of her ignorance about Down syndrome. So, for those who don't know that there's nothing to pity, or for those that have a prenatal diagnosis and think that it's something akin to a death sentence, I have re-posted a list of "Myths and Truths" from the National Down Syndrome Society. (Erin- if you're reading this- THANKS! I totally stole your idea, but think it's an important enough one to post again!)

Myth: Down syndrome is a rare genetic disorder.
Truth: Down syndrome is the most commonly occurring genetic condition. One in every 733 live births is a child with Down syndrome, representing approximately 5,000 births per year in the United States alone. Today, more than 400,000 people in the United States have Down syndrome.

Myth: People with Down syndrome have a short life span.
Truth: Life expectancy for individuals with Down syndrome has increased dramatically in recent years, with the average life expectancy approaching that of peers without Down syndrome.

Myth: Most children with Down syndrome are born to older parents.
Truth: Most children with Down syndrome are born to women younger than 35 years old simply because younger women have more children. However, the incidence of births of children with Down syndrome increases with the age of the mother.

Myth: People with Down syndrome are severely “retarded.”
Truth: Most people with Down syndrome have IQs that fall in the mild to moderate range of intellectual disability (formerly known as “retardation”). Children with Down syndrome fully participate in public and private educational programs. Educators and researchers are still discovering the full educational potential of people with Down syndrome.

Myth: Most people with Down syndrome are institutionalized.
Truth: Today people with Down syndrome live at home with their families and are active participants in the educational, vocational, 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. People with Down syndrome are valued members of their families and their communities, contributing to society in a variety of ways.

Myth: 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.

Myth: Children with Down syndrome must be placed in segregated special education programs.
Truth: Children with Down syndrome have been included in regular academic classrooms in schools across the country. In some instances they are integrated into specific courses, while in other situations students are fully included in the regular classroom for all subjects. The current trend in education is for full inclusion in the social and educational life of the community. Increasingly, individuals with Down syndrome graduate from high school with regular diplomas, participate in post-secondary academic and college experiences and, in some cases, receive college degrees.

Myth: 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 offices: by banks, corporations, nursing homes, hotels and restaurants. They work in the music and entertainment industry, in clerical positions, childcare, the sports field and in the computer industry. People with Down syndrome bring to their jobs enthusiasm, reliability and dedication.

Myth: People with Down syndrome are always happy.
Truth: People with Down syndrome have feelings just like everyone else in the population. They experience the full range of emotions. They respond to positive expressions of friendship and they are hurt and upset by inconsiderate behavior.

Myth: Adults with Down syndrome are unable to form close interpersonal relationships leading to marriage.
Truth: People with Down syndrome date, socialize, form ongoing relationships and marry.

Myth: Down syndrome can never be cured.
Truth: Research on Down syndrome is making great strides in identifying the genes on chromosome 21 that cause the characteristics of Down syndrome. Scientists now feel strongly that it will be possible to improve, correct or prevent many of the problems associated with Down syndrome in the future.

Might be a little different than what you first assumed? It was for me. I'll admit that I knew next to nothing about Down syndrome and had outdated reservations and fears about what it would mean for our family. Now that Elijah is here and doin' his baby thang, it's pretty hard to focus on anything negative about this little one. He's precious. He's worthy. And I am proud to call him my son. Today Elijah did something that I'm SO excited about: He latched on to nurse without the nipple shield!!!!!! I have been carrying this silicon shield around to nurse him everywhere, and while it is not the worst thing it the world, it was still an extra small struggle (to not lose it, to remember to take it with me on outings, when Eli would knock it off accidentally while nursing...) Now that he's 7 weeks old, I decided to give another try without the nipple shield issue! He's a baby-nursing-pro. Call me crazy, but I'm proud of that.

I hope that the Myths and Truths from the NDSS and my experiences so far, can give just a few people a better picture of a life that was more than we expected... an extra chromosome more...and a heart full of gratitude more.


heather said...

I'm not even sure how we connected on fb. I have a lot of friends that share the same DS connection on fb. And I'm not sure if I sent out the friend request but I'm glad I decided to stop by your blog and got to take a peek into your family. It's a beautiful family! I enjoyed reading your words and thoughts. Now I need to go back and start from the beginning. :)

Jenny said...

I have spent the last little while reading your blog and I have to say I am just in love with it! I love how open and honestly you write, I have enjoyed so many of your posts and shared so many of the very same feelings. I look forward to following it :)

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