Friday, March 20, 2009

21 Things for World Down Syndrome Day

Given that it is World Down Syndrome Day, I would like to share 21 things that I have learned because of Down syndrome. I hope you join me in spending some time today also reflecting upon about what you have learned.

1. My life was made better by having Down syndrome in it. I have grown so much as a person and have met such beautiful people because of it.
2. My family’s life is better because of Down syndrome. My boys are more sensitive and caring. My husband has become such a loving primary caregiver to Quinn. She is Daddy’s Little Girl. It is really beautiful to be able to observe this.
3. Language can be hurtful. The r-word is used entirely too much. I never noticed it before. I was truly ignorant about how often it is used and how hurtful it is. Please stop the use of this word. Say something when someone uses it. Person-first language is also so important. My daughter has Down syndrome, but she isn’t Down syndrome. In addition, the term Downs in front of the individual (like with Downs baby) is not preferred (at least by me).
4. Sometimes something that you thought would cause you so much pain is actually the thing that makes you stronger.
5. My daughter with 47 chromosomes will be more loving and appreciative of others than some people with 46 chromosomes. Who really has the disability here? I really don’t have any patience anymore with mean, typical (meaning 46 chromosome) people. I am becoming more and more assertive because of this.
6. You learn a lot about the character of those in your life when you go through something like this. There are some people who have been so supportive, and I am blessed to have these people in my life. Unfortunately this isn’t the case with everyone, but you can’t dwell on that. At least you get some clarity in your life because of Down syndrome.
7. Low muscle tone isn’t entirely a bad thing. It means that Quinny just melts right into you when you hold her.
8. There are some truly remarkable people who happen to have Down syndrome. For instance, Karen Gaffney swam across Lake Tahoe. Christopher Burke is a famous actor and musician. In fact, quite a few people with Down syndrome have musical ability. Riley may have another member in his rock band. As authors Jason Kingsley and Michael Levitz (who also have Down syndrome) demonstrate in their book, don’t count people with Down syndrome out!
9. Babies with Down syndrome are so darn cute! I certainly can’t resist them. Riley agrees.
10. It has been estimated that something like 90% of those who receive a prenatal diagnosis of Down syndrome terminate their pregnancies. It is hard to believe that I am in the minority here. Although I am not pro-life, this still hurts. The idea that a wanted, planned baby would be terminated for nothing more than not being “perfect” is a sad reflection on the values in today’s society.
11. Some countries treat those with Down syndrome like we did in the USA years and years ago. They are given up and placed in orphanages and institutions. This is truly sad considering my point with Number 8. Like some talented people who end up in prison, there are some talented people who end up in mental institutions because of Down syndrome. Only with the Down syndrome side of things, this is because of an extra chromosome, not by any bad choice that they made or because others felt they deserved it through their behavior.
12. Although Down syndrome was named after Langdon Down, it was actually Jerome Lejeune who identified the true cause, that is, three chromosomes being present on what should be the 21st pair.
13. Down syndrome is a syndrome – that means that everyone with Down syndrome does not have the same functioning and/or presenting problems. For example, it is possible to have Down syndrome and not have a heart defect. It is a syndrome, so there are a set of areas that can be affected and which areas vary depending upon the individual.
14. A person who has a child with Down syndrome starts to get excited when they see someone else with Down syndrome. It is a bond like no other. We gravitate towards other families with children with Down syndrome.
15. You come up with strange ways to cope. Sometimes when Neal and I feel down because Quinn isn’t progressing as fast as other kids her age we start out a conversation with “You want to be depressed…” It is just a weird little way that we show our bond on this journey. It isn’t bad to become depressed every now and again. It is only natural. It is nice having Neal along with me on this journey.
16. Quinn likely has Down syndrome because of my egg having an extra 21st chromosome. It was either that or because of Neal’s sperm, but it is more likely because of my egg. Think about that, it just happened by chance. It was by complete chance that this little girl would come into our lives and impact us so much. Isn’t that awesome when you really think about it? Sometimes things have a funny way of working out.
17. Having a child with developmental disabilities isn’t necessarily a bad thing. Your baby is a baby for a longer period of time. Since Quinn may be the last baby I have, that way I get to keep that feeling of having a baby for a longer period of time.
18. Down syndrome, because of identifiable physical features, is the face of cognitive disabilities. Unfortunately this creates some problems in the assumptions others make about people with Down syndrome just based upon their appearance. I am learning what discrimination truly is. As a Caucasian American, I was pretty naive about discrimination before having Quinn, but now I have a better understanding about the more hateful aspects of our society. When you have a child with a disability, you see both the extreme good and the extreme bad in the world.
19. Blogs are actually fun. I would never have started to blog if I did not have Quinn. I joined an online support group in which a lot of members had blogs. I became intrigued and started to explore them. Then I started thinking maybe I could create a blog for my family and friends, my past students, others on this journey, and anyone else who is interested in learning a bit more about what it is like for families who have a child with Down syndrome. This has been pretty fun and therapeutic all at the same time.
20. I have learned so much from Soren Palumbo, Emily Perl Kingsley, Jennifer Graf Groneberg, Kathryn Lynard Soper, and all the authors of the essays in the book Gifts. Because of Down syndrome I continue to learn on a daily basis and am receiving one of the best educations possible.
21. I really understand the concept of unconditional love. It is one thing to study it in psychology class. It is another thing to feel it while you are parenting your typical children. However, it is really truly the best thing to fully experience it when you parent a child who has a disability. This is what parenting is all about. Unconditional love is beautiful.

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