Simply Said… Stephanie about Down Syndrome

Today is a special day for me. I asked my dear friend, Stephanie, to share with us some of her experiences and expertise being a mother of a child with Down syndrome. Stephanie is one of the most amazing mothers I have ever met with three adorable, intelligent and witty children. Stephanie has served in many organizations and board positions supporting children with Down syndrome and their mothers. She is also the author of a nationally recommended prenatal book about Down syndrome called Understanding a Down Syndrome Diagnosis. Even if you don’t have a child with DS, you may know someone. Stephanie also shares with us how we all can value those with DS. This is Stephanie who simply said…

When my husband and I found out that our son Andy was born with Down syndrome 10 years ago, we were devastated 23 year olds who were terrified about the future ahead of us. It didn’t take too long for the news to settle in and for us to take comfort in the ear-to-ear smiles of our baby and the scent of his wispy hair.

Now, that news has become a remarkably ordinary reality. Therapy schedules are simply part of our routine, and we go on vacations, referee sibling squabbles and ride bikes in the neighborhood just like everyone else. Don’t get me wrong, we work hard to help Andy overcome his challenges, but it’s just a part of life. However, I must admit that it has given us a clarity that has forever changed the way we see the world and the people in it.

Top five truths about Down syndrome

1. Like everyone else, people with Down syndrome are individuals with their own strengths and challenges. Andy is an amazing photographer, bike rider and tech wiz like his dad, but reading and math are harder for him. Others of his friends with Down syndrome are reading at grade level and working on fractions but may struggle with speech. However, one thing they have in common is that opportunities continue to improve for all of them.

2. Most parents of children with Down syndrome say their children have a positive impact on their entire family and increase their appreciation for humanity and empathy for others. In fact, the parents of children with Down syndrome actually have a lower divorce rate than average. For us, Andy’s birth was the defining moment of our lives. You can find some amazing stories at Kelle Hampton’s blog and in the book, Gifts.

3. Studies show that most siblings of children with Down syndrome actually tend to be more compassionate and well adjusted than their peers. My 7-year-old daughter Kate says of all the different kids we meet who have Down syndrome, cerebral palsy and autism, “They’re just like us.” At such a young age, she understands naturally what it means to view people without bias or stigma — a true gift. You can hear more stories from siblings in Gifts 2 and from Brian Skotko — one of my favorite sibs and a leader in the community. My essay about Andy’s first cub scout Pinewood derby also appears in this book.

4. People with Down syndrome are increasingly finding meaningful jobs — like teaching assistants, legal assistants, lab technicians, artists, actors and more. One of my personal heroes is Karen Gaffney, a teacher’s assistant and long distance swimmer. But, this is definitely an area where we hope for even more opportunities.

5. People with Down syndrome do experience some legitimate challenges with learning, speech, health, etc. that require additional services and patience. This is where you can help.

Five ways you can value people with Down syndrome

1. If you know parents who have a baby with Down syndrome, tell them, “Congratulations” and offer to listen. Never say, “I’m sorry.” I actually waited three days to tell my friends about Andy’s birth. The reason: I was devastated about the diagnosis and terribly depressed about him being in the NICU, but I wanted to compose myself enough so that no one ever apologized. Even though I was sad, I fiercely loved him, and never wanted anyone to be sorry about him.

2. People with Down syndrome want friends and relationships just like everyone else. So, invite our children over for parties, play dates and library field trips to start friendships that last a lifetime. These relationships can be meaningful and fulfilling on both sides. Studies show that, like siblings, students at schools that include people with disabilities are actually more compassionate and improve their own learning by teaching.

3. Be understanding about challenges. Even though most people with Down syndrome can understand you, they sometimes struggle to follow complex directions or to communicate as quickly as they would like to. Take the time to listen, teach and be patient. You can also ask their parents if you are unsure about what adjustments you might need to make.

4. Use respectful language and avoid stereotypes of both children with Down syndrome and their parents. Parents don’t want to be called saints — it puts us on a pedestal that makes us feel different, and our children aren’t always “sweet.” In fact, sometimes they are downright cranky — just like all kids.

Most parents would also prefer that you use “people first” language, which means you say “a child with Down syndrome” rather than “a Down syndrome child.” The point is that the most important thing about them is not their diagnosis. And, of course, pretty much all of us hate the r-word.

5. Encourage people with Down syndrome to reach their potential. Sincerely congratulate their achievements, nurture their talents and invite them to be part of your community — at school, on the playground and at work. Isn’t this true for everyone, really?

» Tell me… What do you think about Stephanie’s list? Share with me some of your experiences with Down syndrome or people you know with DS.

32 Responses to “Simply Said… Stephanie about Down Syndrome”

  • Stephanie

    I love this story. My sister has juevenile rhuematory arthritis and growing up, I was much like Stephanie’s daughter. It is simply the way you grow up and it makes you much more sensitive to other people. To me, my sister was simply my sister, not a child with an illness. But as the sibling it was very frustrating to always have a “special child” in the family that was treated differently by those outside the family. Members of our church always remembered my sister, but forgot my name. People always inquired about my sister’s well being but not about my own. So as another tip, I would also suggest that people take time to appreciate all children in a family that has a child with a disabilty and not just the child with a disability.

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  • Robin

    I love this post!! It is very insightful. I am the mother of 3 fabulous kids – 2 of whom have autism. A lot of your advice applies to families with autistic children as well. Here is hoping for more inclusion and understanding for all people with special needs! :0)

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  • Cathy

    I love , love this post! I am a mom of six children and my last child is an angel who just happens to have Down syndrome. Stephanie has expressed so much of what I feel on a daily basis. Thank you Stephanie for writing this and you Tiffany for posting it on your blog.

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    • Tiffany

      i am so glad you were able to relate to this post. i learned so much from stephanie about DS that i thought everyone could benefit from what she had to say. 🙂

  • Sarah Buttenwieser

    Jennifer Graf Groneberg’s wonderful memoir Road Map to Holland should also be on anyone’s must-read list.

    Thanks for this. Lovely.

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  • Mary J

    Great post!! I remember two friends from elementary school with Down syndrome – Matt and Laura. I was so sad when I moved! In 5th grade, every time Matt left our classroom to go with his aid, he would yell across the room “I love you Mary Bobo.” Laura always hugged me and wanted to tell me about her weekends. I learned a lot from Stephanie’s list and will remember those things as my girls start kindergarten and meet children with Down Syndrome. Now I know to make sure those children are invited to the birthday parties and what nots – I hope I would have anyways, but now I know I will.

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  • laurie

    I love this being shared. My 21 year old step sister was born with multiple birth defects. She did not see or hear until she was 4. As a result her speech is very delayed and often she prefers to not speak at all, unless conversing with the dogs. She can be a pure delight to have around (especially at holidays, I love how exciting Christmas is for her), she can also be a stubborn strong willed person. Just like any other human. She came into my life when I was 15 and she was 7. Now at 29 I cannot imagine life with out her. It is frustrating for me to see family members trying to converse with my sister and not pausing to try to converse on her level. Complex conversations are hard for her. When they engage her in a complex conversations I can just see her brain grind to a halt as she tries to puzzle out what they just said. I love that you took the time to share this and hope that other families will better learn to respect and understand people with special needs.

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  • Kate

    Awesome post. I don’t have children (hope to someday) but know a few families who have a child with DS. All of the points here are great and very helpful to our communities!

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  • Heather S

    I was an infant development teacher for a couple of years and worked with many special needs kids. I always loved getting clients who had Down Syndrome because they were such a joy to work with. I also have a friend with a special needs son and whenever he is in our home to play with my son, I always feel extremely blessed by what I learn from him.

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  • tartankiwi

    I too loved reading this article. It sent tingles down my spine and brought tears (the good kind) to my eyes. Working in a hospital I have come across a few people with downs and they never cease to amaze me. I learnt early on, never to under estimate them, treat them with respect and you will be rewarded ten-fold. I really hope that I can teach my daughter to be tolerant to all and this article has got me thinking about how I can teach that.
    One of my favourite encounters was with a young man with Downs, he came in for his x-ray on his own and did everything I asked perfectly. When I accompanied him to his carer in the hallway, the young man flung his arms around me, gave me a big kiss on the cheek and announced to the world that I was his girlfriend! His carer was hugely embarrassed, but there was no need for that. The warmth and sense of fun of the young man still brings a smile to my face even though this happened quite a few years ago.

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  • tartankiwi

    Sorry, but I just had to come back and correct my earlier comment. I said that I hope that my daughter would grow up to be tolerant. I meant to say that I hope that she will be accepting of all. To me the word tolerant has a slightly negative connotation and that was not my intention.

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  • Denise

    This is a family we love, respect and adore more than words can say. We knew them when Andy was born. Stephanie is truly a remarkable person, mother, friend. She has influenced my children in beautiful ways. Her three children are priceless! As for dull moments…not many in her house! We love love them dearly!

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  • Becca

    I love this post. I have a 3 month old little girl with down syndrome. She already has brought so much joy to our lives and has taught us so much! What comforting words that Stephanie simply said….they meant a lot to me:) THANK YOU!

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  • Stacy of KSW

    I’m so blessed to have taken the time to check my reader tonight, you continue to choose amazing content for your blog and reading it helps me to be a better person. Stephanie’s words will carry with me for a very long time and I know will one day be very useful to me. Her children are all beautiful on the inside and out and I know this is because she is a terrific mother.

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  • Stephanie

    Thanks so much for the kind responses everyone — some you brought me to tears also. I especially appreciated those of you who said that the suggestions could be used for people with different kinds of disabilities. That was very much my intention. I think these conversations are so important to help all people with disabilities become fully immersed in the vibrant fabric of our communities. Thanks Tiffany for knowing that it matters!

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  • Stephanie

    And, yes, “Roadmap to Holland” was also a great suggestion — as is the original “Welcome to Holland” by Emily Perl Kingsley.

    Reply
    • Stacie Jakob and Gavins Mommy

      To paint the octopus red is a great children book

  • Sandi Graham-McWade

    Wow, what great insight. We have a 7 1/2 month old son who has Ds, and he is the most inspiring person in our lives. He has taught us so much in his short existence, and because of it we advocate on a daily basis. I loved this so much, I have added a link to my blog so that I can share what I have read to those who I think would also enjoy it and learn from it. Our son has inspired me to become an author and publish my books and my own Analogy called “Welcome to Our House”. If anyone is interested in learning about our journey please come and see us at http://welcometoourhouse-myjournal.blogspot.com
    Please keep up the great work Stephanie, I feel thoroughly empowered by what I have read from your work. What you tell the world hopefully will raise the kind of awareness most of us struggle to also show through and with our kids.
    Please know that I smiled from ear to ear while reading and nodding along all the way through!
    All our love and support,
    Sandi Graham-McWade and Family.

    Reply
    • Tiffany

      thanks for your comment, sandi. what a fun blog you have. thanks for sharing it.

  • Sandi Graham-McWade

    Stephanie,
    I wanted to add that in addition to putting a link to this page on my blog, I also put a link to your book that you wrote, so that people like me have a resource for prenatal diagnosis. I haven’t read your book yet, but I bet if it is as insightful as this article, it’s superb.
    Thanks again,
    Sandi

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  • Kalee

    I was catching up on blogs and this one has me in tears. My favorite time in my life ever was volunteering with special olympics bowling at college. Having previously worked in a special needs pre-school I was more prepared than others, I guess. But I loved helping other people see that the bowlers were no different than us. I even did dinner with one man and his mother (who helped organize everything) as well as playing pool at his house (and he whooped me). I had 4 men who meant the world to me, who teased me, who defended my chair (when I dared leave it!), who made my heart grow many sizes bigger.

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  • Stacie Jakob and Gavins Mommy

    I just came across this wonderful blog. I was a Mommy to the worlds best lil boy with downs. I too was a young Mommy at 24 I was blessed with Jakob. He was my 1st born and my 1st baby boy. He over came so many issues and everyday I had with him was a true blessing. Jakob lost his battle with Cancer in Oct 05 at the age of 5 1/2. People ask me all the time would you do it again knowing what I know now? I dont even have to think about it. I now have a 2 1/2 year old with my new husband and we have been trying to add to our family for a year now with 3 heartbreaking early losses. I had to stop seeing the OB to whom I was referred to due to pure stupidness(is that a word LOL) His words where well you already had one child with downs you were blessed to have a AVG child and now you have had 3 early losses which were probably due to a genic disorder so stop playing with a loaded gun. DO YOU WANT another R Child. I smacked him and left his office only to have his boss call me and ask me what happed. I lost it on him and come to find out his oldest daughter has ds. He asked my DH and I to attend a meeting with this other ob and well long story short he is no longer in that office. Now we have decieded not to go back to that office just because I cant with out feeling so angery. We have put everything in gods hands and we are expecting again and praying for a keeper.

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    • Tiffany

      thanks so much for sharing your touching story. i hope the best for you as you try to have more children. they need a wonderful mother like you!

  • Deb

    Thank you for such a great post on Down Syndrome! I wish we could broadcast it on the 10:00 news. My son (who has DS) is 17, and is one of the greatest joys of my life. He is one of the few people I know that instinctively thinks of others first. It seems to be in that ‘extra’ chromosome! Would like to link to this post on his blog, Upside Down Syndrome (http://upsidedownsyndrome.blogspot.com).

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  • Rebecca Talley

    Wonderful post and great list. I have 10 children and my youngest has DS. He’s 4 and he’s just a regualr part of our family like all the rest of the kids. He’s as different and as alike as the rest of them. I have a blog about my experiences with him http://www.theupsideofdown2.blogspot.com if anyone’s interested. I’m very thankful for my son and even more thankful that God chose me to be his mother. I’m glad to read of others who feel as blessed as I do.

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  • William Hall

    I enjoyed your article very much. As your father you and my grandchildren make me so proud. The blessings of father and grandfather are are unreal when one has kids and grandchildren like you and your sisters. So many trials you guys have been through and still have attitudes that are enviable of anyone who know my children.

    Reply

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