Monday, October 6, 2008

Life With Down Syndrome

As you all probably know, my daughter is only 6 (almost 7 years old) so I do not really know what the future holds for her. What I do know is that it offers her more than I ever dreamed it could when we first got the diagnosis that she had Down syndrome. There have been great advances both medically and socially that have allowed a person with Down syndrome to live a fulfilling life. One of those great achievements have been early intervention.

It used to just be assumed that a person with Down syndrome could not really learn or adapt well and therefore they were never given an opportunity to do so. They have since learned that not only are they able to learn but sometimes there are medical reasons for some of their delays. For instance part of their speech difficulties are sometimes due to hearing loss and their reading delays actually appear worse than they are when the child suffers from poor vision. Because they now know these facts children with Down syndrome are screened at a very early age to catch these sorts of problems and correct them before they hinder learning and development. Gess had tubes put in her ears at about age 1, not because she had ear infections but because the canals in her ears were so small that they were not draining and therefore it made it more difficult for her to hear. They also screened her vision when she was only a year old. She did not need or begin to use glasses until she was four but these two things alone have tremendously affected her ability to interact with her surroundings let alone assist in her learning. Those are just two examples of how early intervention has improved the quality of her life.

There are programs to assist families with early intervention. In Kansas it is called Birth To Three. Once you enroll they help to not only check for hearing and vision loss but also offer occupational, physical, and speech therapy. They help provide you with all the resources you need to give your child the best start possible. I am a strong advocate for early intervention programs for children that have delays or challenges such as Down syndrome. I have found this tool an invaluable one in our life and thank the great ladies who visited our house each month (often more than once a month). They were the ones who taught me how to teach my daughter to do things that come naturally to most children such as rolling over, sitting up, crawling, walking and even eating. (Yes, Gess did not eat or drink by mouth for the first year of her life!)

Children with Down syndrome are also being mainstreamed into public school and other programs and they are finding that they adapt and do really well. Integration is not only helping our children but when its done at an early age it helps to curb stereotypes and bigotry that often occurs. When you have always known a child with Down syndrome to you there is nothing "strange" about them. I love watching Gess interact with other children. Young kids just accept you however you are. If they can keep that perspective as they get older the world will be a better place.

Of course some of us also choose to home school children with special needs and that movement is on the rise. While we realize that integration and socialization with peers is important we also find that being able to fully individualize their educational program gives them the greatest level of success. In either case our goal is to teach our children skills that will help them to live as independently as possible when they are older. And many are doing just that.

Adults with Down syndrome are starting to attend college and get jobs to help provide for themselves. I keep learning of or reading about some other person with Down syndrome who has done something great. Karen Gaffney seems to be my favorite. She went to college and is a certified teacher's aid! She is also a great swimmer and was the first person with DS to swim across the English channel as part of a relay team and recently swam solo across Lake Tahoe. She has a swimming camp for children with special needs which encourages them to get into shape and challenge their own abilities. What a great story of hope she offers us all!

What does the future hold for Gesserine? I don't know. What I do know is that I am not going to do anything to limit her options. If she has a dream I will encourage her to chase it even if others say it is impossible. There may be things she will not be able to do and we will accept that if and when that limit comes. Until then the sky is the limit and Gess is my inspiration. Whenever you think life is unfair or complain that you hate life remember that there are many who had greater obstacles to overcome and instead of complaining about it they smile. They find life fulfilling why can't we? Maybe its because we are the ones limiting ourselves? That's something to think about anyway.

For now Gess, like any other child, will continue to form her dreams and we will encourage her.

Maybe she will be a fireman

A talented musician

Or even a Pirate.

Aye Mate!

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