Raising a Child with Down Syndrome
by admin on November 17, 2009
in disability, down syndrome, mosaic down syndrome, parenting, special needs
Yesterday I read “Down Syndrome Births Are Down in U.S.” at ABC News, which talks about the effects of the statistic that 80% of pregnant women who take the amnio and discover that their fetus has Down syndrome choose to terminate the pregnancy. The result is a huge decrease in births of babies with Down syndrome, which in turn, will affect funding for research on this syndrome and, perhaps, eventually affect laws.
There were a few things I was shocked by in reading this:
- Fear. People are actually afraid of having a baby with Down syndrome. The mother in the article literally preferred her child have a heart defect rather than Down syndrome. This makes me so sad! I can tell you this: “fear” is tied to not understanding Down syndrome and not knowing people who have an extra chromosone, in addition to going by outmoded data. It’s been decades since people with Down syndrome are typically committed to mental health institutions.
- Rush. Of course, aborting a fetus means you have a time consideration and generally, you have a small window of time to decide. I recall so clearly the emphasis made on genetic counseling to decide whether or not to have an amnio. Genetic counseling teaches you the medical issues about fetuses with the conditions they can test for as well as the test. What they don’t tell you is what those conditions mean; I’m gathering from the article that doctors often do not paint an optimistic picture of caring for and raising a child with this disability.
I’m writing this article to clear these issues up.
HEALTH
First of all, there is nothing more to fear with a child with Down syndrome* than any other child, excepting if your child has a heart defect. This is fairly typical, however, keep in mind that the heart is one of the organs in the body that quite a lot is known about about and quite a lot can be done surgically and otherwise to fix problems.
Shortly after Amelia was born, we discovered that she had a tiny hole in her heart. In fact, her heart grew as the hole – the size of a pinpoint – grew, and in another area where she had issues, the growth of her heart acted as a kind of bandage over the hole. She has not needed surgery or had any issues, although we did need to monitor her as a child and every 2 years she gets a sonogram. Now, we do also have issues with sinuses, there is a slightly elevated chance of leukemia and thyroid issues, and Amelia did not have hypotonia. Still, children are not a guarantee and I just read that kids who have leukemia and Down syndrome have a better survival rate than kids who don’t have Down syndrome. Wow, so don’t make your chicken sick before they hatch…
ABILITIES & DISABILITIES
As you know, Amelia has learning disabilities. While she is not academically up to the level of a typically developing 6 year old, she is not so far behind that I can’t see a good future for her. I fully expect her to go to high school, and possibly, college. More and more colleges are now trying to set up programs to help these youths become fully integrated students and members of society. I have no doubt that she will live on her own and be gainfully employed doing something she loves. She may even marry!
Sure, we have to work a little harder and I may have to fight a bit more, and on any given day, the paperwork for my kids can be stunning. But this is just part of being a good parent. You don’t know what your kids will deal with, but for sure, they will deal with something and you may have to put on your boxing gloves and show up at the ring.
What I’ve gained: a beautiful, happy, infectiously ecstatic child, who loves and appreciate people and nature, who screams “mommy!” with peels of glee whenever she sees me, patience, advanced track on spirituality, gratitude, a better marriage.. really, I could go on and on. I am glad that I never chose to abort that pregancy and I think many others would feel the same if they learned more about Down syndrome. Or maybe I’m just a hopeless optimist, lol!
Now that you know a little, I encourage you to learn more, particularly if you know anyone getting an amnio or CVS, or anyone who has a fetus or child with this condition, or comment me with any questions, or ask a family who has a member with Down syndrome, or get out there and meet some of these wonderful people! Here is a list of resources:
- Down Syndrome Myths & Truth (scroll down under Sarah Palin press release)
- Why The Abortion Rate for those with Down Syndrome is over 90%: Kristy at the wonderful Mosaic Moments shares her thoughts and argues for keeping the pregnancy.
- Down syndrome “typical” symptoms from WebMD. Remember, every child is unique so these are not “guaranteed”.
- National Down Syndrome Congress site: we are ALL more alike than different!
- National Down Syndrome Society
- East Penn Down Syndrome Center for those located in and near Lehigh Valley and Allentown, PA
Share your resources, stories and questions in comments!
*Note that Amelia has Mosaic Down syndrome, which is very rare and slightly different, in which the continuum of affected health, physical, and mental issues may be somewhat to the higher end of functioning.
I have addressed this on my blog, as well. Our son has been nothing but a blessing and we cannot imagine life without his extra chromosome!
Thank you Tara! I know EXACTLY what you mean! It’s funny, though, personally I find autism a more difficult disability, even though my daughter is less likely to have any form of MR. Weird, right?
I have a 3 year old daughter with Downs Syndrome. Reading this makes my heart break if they only knew the magic they will be missing in their lives. I have a friend with a 16 year old son with Downs and when she found out I had a child with Downs she congratulated me.
We all know exactly why, I would much rather have a child with Downs then Autism. Lauren is the light of my life!
My passion is for new parents to realize what a blessing these children are to their families. You are right people are afraid because they don’t have first hand knowledge. You are welcome to list my website as a resource and pass it on to anyone who might be able to use it. Dayna http://www.alifworthliving.us
Just to say that I’ve just found this site today. You have some excellent information that I’m looking forward to reading. I’m a speech therapist in the UK. I don’t have a child with Down Syndrome but I had a child with a brain tumor that led to many physical diabilities – so I can empathise regarding raising children who have special needs. All our children are blessings, aren’t they?
Many thanks!
Graham´s last blog ..Speech difficulty in children
Hi Graham, thank you!! Having had a stroke, I know a teensy bit about how delicate the brain can be. I’m so glad you visited and what a valuable resource you have there! Both my kids have speech difficulties, I find the more I know and the more tricks I can try the better.
Thank you Danya, and welcome to mom blog! You have a terrific resources site and all those beautiful children on it! I sure will add your link, thanks. And yes, what a blessing they are!
Autism is harder on so many levels, but you know what? Zoe is just as delightful and as much as a blessing as Amelia, so I don’t mind either disability! We’re the ones who have to learn to get along, for them it’s just life. Thanks for visiting Jennie and bless your little one!
I have just been told my son has down syndrome, he is 7 months old. If anyone has any advice for me I would greatly appreciate. Until a month ago I didnt even know what down syndrome was. No offense to any of you but know I feel like a doctor I know everything there is too know. And I also know that I am in charge of how well my son achieves his goals.
Wendy, my heart goes out to you. I know a little how you feel…we didn’t find out about Amelia’s diagnosis til she was nearly 1 month old. I have some resources and info for you. I’m buried in work, but when I come out in a day or 2, I’ll send you some good resources that will help. Look locally for help… I cannot even tell you how much info and assistance I got from my pediatrician and local groups.
Saying a prayer for your family now, peace,
g
Dear all,
Thank you for the wonderful advise. I have a 7 month old daughter who has been diagnosed with down syndrome. Initially i was very hurt and often asked why me! It was very hard for my wife to accept it first. Now we both love our daugher like crazy, she just brought out the purest love within our sould. I am gald she is ours….!
iiiiiii dont like how jennie says “id rather a child with downs than a child with autism” imagine how a parent with a child that has autism would feel. some people need to be more considerate of others.. think before you type. these are all beautiful stories.. all children are a special gift and they depend on us to show them how to live.. love&blessings for you all <3
Hi Kerrie, I understand your response, but as the mom of one child with Down syndrome and another with autism, I can understand Jennie’s position. In terms of sheer stress factor, in terms of tantrums and difficulties with communication. Zoe has a very high level of stress, and this is tough me and her dad. Keeping our stress down is challenging, but the only thing we can do. Amelia, on the other hand, is laid back and calm. Even if she gets upset over something (if she falls and scrapes her knee or the dog grabs her toy, for instance), it’s over in a few seconds.
Maybe it’s just in Jennie’s wording. I don’t exactly want to say that Zoe is more difficult, but she can be more stressful.