Raising a Child with Down Syndrome

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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.

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…

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:

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.

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19 thoughts on “Raising a Child with Down Syndrome

  1. Tara

    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!

    1. admin Post author

      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?

  2. Jennie Ely

    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!

    1. admin Post author

      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!

  3. Dayna Chandler

    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

    1. admin Post author

      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!

  4. Graham

    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 =-.

    1. admin Post author

      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.

  5. wendy

    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.

    1. admin Post author

      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,

  6. Sri

    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….!

  7. kerrie

    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

    1. admin Post author

      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.

  8. Charity Harris

    I am praying about adoption a child with down syndrome. I have three children already (who were not adopted) ages 10, 7, & 3 1/2. I would like to adopt a 2-3 yr old boy. Any concerns or comments for me? I’m scared because I haven’t been around anyone with down syndrome and have no idea what this will involve. I know I need to get educated before I jump in.

  9. jessie langfeldt

    We too are thinking and praying about adopting a child with down syndrome. We also have 3 children. I am not sure what to expect. Could you help?

    1. admin Post author

      Hi Jessica, how are you? So first of all, Amelia was an easy, angel baby. We did have to monitor her heart as she had a heart murmur, so if you are adopting, there may be medical considerations – and yes, that will be scary! We were lucky it came to nothing, but I’m not sure what the odds are – I understand the birth defect is very common. Make sure you have a stable insurance plan and are ready to deal with the possibility of surgery if it comes to that. Also, children with Down syndrome have increased chance of leukemia and thyroid dysfunction. (Thyroid dysfunction affects 25% of ALL people in general, so it’s not a big deal. I have it.) If you can handle the medical, the additional issues will be dealing with school/preschool/therapists/aides and finding special needs resources. Amelia has always had an aide, in our state, once she got into the school system, it was provided for her there. Know that when I last checked, all people with Down syndrome are eligible for Medicaid and usually social security (beware though – things are changing with this congress, and they have no problem taking away benefits for disabled people). We have not yet tried for SS, though we can. Look into preschool – many states, like NJ and PA, have programs for special needs kids. As far as school, how your child learns is YOUR choice, by law (the law is called IDEA) and in the least restrictive environment. Good school districts can give you headaches, segregating disabled children and calling it “inclusion”. We have Amelia in a fully inclusive program – she is thriving, and she is fairly high functioning. Like autism, Down syndrome is a spectrum and functioning ability can lie anywhere. THAT said, keep praying on it and let God direct you. Adopting a child with DS means you made the choice and you’ll be blessed forever. My friend at http://www.dontlicktheferrets.com/ adopted and has NEVER regretted it for a second. GOOD LUCK!! Feel free to email me if you have more questions, and check out my mosaic down syndrome page for resources on DS. ginabad at gmail dot com

  10. Minnie

    What a beautiful article. It’s truthful and touching. I love it! Thank you very much for writing it.

  11. Dominique

    I am a mother of three wonderful children. My oldest is 14 years old and is mild Down Syndrome. I have the hardest time finding summer care for her while I work that does not cost a fortune or who is willing to take care of her. Does anyone have any suggestions as to what I can do? We are a military family so having family memebers help is not really a choice for us.
    Dominique´s last blog post ..#Giveaway: Sterling Silver Personalized Name Necklace

    1. admin Post author

      Hi Dominique, there are no easy answers for this. What we’ve done in the past is taken ads out on Craigslist -but you have to be careful there, really do your due diligence and get them to have clearance and background checks. We’ve also used college students, and Care.com, especially when they have a free weekend discount. We leave no stone unturned when we do need help, but it’s not easy to find and it depends on the level of care your son needs. Do you have any organizations near you, for example, The Arc, that can help guide you? A local faith group perhaps? (Again, more things we’ve tried.) Good luck, I’ll pray you find someone!

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