21 Secrets of Parents of Kids With Down Syndrome

When my daughter was born with Down syndrome, I didn’t know what to expect. All I knew were stereotypes and outdated information. When I stopped by the local library to check out books on Down syndrome, every book was old, making me want to curl in a corner and cry. If I believed what those books said and what I had been misinformed to believe, it seemed our life would be bleak and hopeless. Thankfully, I soon learned there was more to look forward to than there was to fear.

When our daughter was 2 weeks old, we ended up at Mayo Clinic, where my husband suggested we become “experts” in Down syndrome. That took us to a local bookstore where we got up-to-date books, including “Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives,” edited by Kathryn Lynard. I clutched the book to my chest and sobbed in the middle of the aisle because I was holding on to words of hope from mothers who had been there.

Now, as my daughter is fast approaching her 10th birthday, I recognize there is so much I did not know or understand about Down syndrome. She is my light, my life, my heart. Down syndrome is something in her I cherish, and I cannot imagine life without what she brings into our family. Life with her is rich and full.

We reached out to other parents of children with Down syndrome and asked them, “What do you wish people understood about your child or your life?”

These were their responses:

1. “My life is busy because I have three kids, not because I have a child with Down Syndrome. We do everything other families do with minor adjustments for my daughter’s needs. Do not feel sorry for us. Nothing is guaranteed in this life and anyone’s child could become ill or have an accident and you could have a million doctor and therapy appointments as well. My child was just born this way and just like anyone else’s child, I will do whatever it takes for her to be happy and be successful in life.” — Dana C.

2. “It’s not what I had imagined when I was pregnant but it has turned out to be better than I ever thought. Yes, we have extra appointments and therapy three times a week, but when he smiles it makes everything worth it. We are more blessed than I ever thought was possible.” — Kimberly G.

3. “My life is no different than yours. I’m trying to raise a well rounded child with morals, values and compassion for others. Some of our other skills just take special helpers.” — Marie D.

4. “I am genuinely happy. I do not envy [other people’s] lives or wish for anything to be different at all. I feel like people see me, a single mother of a child with Down syndrome, and they pity me at times, but I truly thank God every single day for how my life has turned out. My daughter is funny, intelligent, beautiful, affectionate and just so much fun to be around. She has taught me the meaning of life.” — Jeannette C.

5. “I wish people understood my son is a 12-year-old boy who likes going to the movies, playing video games and wrestling — he also happens to have Down syndrome. It does not define him but it is part of him and we wouldn’t change that.” — Jennifer D.

6. “There’s honestly nothing different from my son and any other child — he loves to give hugs, he loves to laugh, he loves to watch his little brother. We are not about to limit him with anything he decides to accomplish. We want the best for him just like any parent would want for their child. Down syndrome is just another part of my son, a characteristic like his blue eyes or killer smile. It doesn’t define who he is but it is a part of him.” — Allison N.

7. “Ask, please don’t assume. Ask if we would like to join you for a night out, don’t assume we can’t ever go out. Ask if we can help watch your kids, don’t assume our hands are full. Ask if she can attend a party, don’t assume she can’t handle the chaos. Ask about our child, don’t assume we don’t want to talk about her.” — Missy A.

8. “[My child] loves ‘Sesame Street’ and hates corn. He is obsessed with pizza, crazy about ice cream and will happily share either of these with you. If a good song comes on, he will break into dance. When he’s tired he is a tornado. He sometimes kisses anyone in his path and can’t pass by you without waving hi. This boy is not even 3 yet and I can go on and on listing why his life is worthy. He is a brother, son, friend , cousin, teacher and a gift. We are so lucky to call this fearless, friendly and fun little boy an important part of our family.” — Beth A.

9. “Our 5-year-old daughter is more like your 5-year-old daughter than different. She loves ‘Moana,’ ‘Frozen,’ dresses, singing and dancing. Our life is only different than the ‘typical’ life in that we have a few more regularly scheduled doctor’s visits.” — Christopher S.

10. “My ‘kid’ is now 29. I wish when he was young I was told, ‘It will be OK.’ I spent way too much time worrying about ‘what if’ and wondering what the future would be. Just take it one day at a time and have fun! Your kid is just a kid. Treat him/her like any other kid. It will be OK, I promise!” — Judy O.

11. “I have three children with Down syndrome. They are all so different and alike at the same time. When I think about my children I think, ‘Wow, God chose me to be the mother of the most amazing, adorable, beautiful, loving, life changing babies.’ I see life for what it truly is, and how it is supposed to be. I see hope and beauty when I look into their eyes. I often wonder if I am good enough to be their mommy. I see these things in my children, and I wish everyone saw this in them, [too]. I pray for a day when I don’t see that look in people’s eyes, that look of sympathy. I wish I could see joy in strangers’ eyes when they see my children. They are not a burden to me, they are my beautiful world. These people I was privileged with bringing into this world have taught me how to love and care. They have taught me lessons I don’t think I would have ever learned without them. I wish others could see the endless possibilities of love and peace that come with my [kids].” — Brandie B.

12. “My perception of Down syndrome was not what reality is now. I found out at 20 weeks pregnant that my daughter would be born with Down syndrome and I was devastated. The doctor who delivered the news wasn’t very positive so that didn’t help. He said she would end up in an institution, that she would be a burden not only to us but to society, that she wouldn’t be able to feed or clothe herself. Boy was he 100 percent wrong! And so was I! My daughter brings so much joy and happiness just like our other daughter, but the best part is our life is pretty normal! She can feed herself, she can clothe herself, she communicates loud and clear and she’s like a regular 3-year-old. I wish more people knew what kind of life we live, because ‘professionals’ like the one we sadly encountered are more interested in ending the Down syndrome population than giving us advice on what if we kept her. The fear of the unknown can be pretty scary…but if we are well educated then we can see the beautiful possibilities!” — Maria M.

13. “My daughter is very different than her peers. Her speech is harder to understand, she can’t communicate as well as they do and she physically looks different because she has alopecia as well. However, none of this takes away from her value as a human being. Our intrinsic value does not come from fitting in, keeping up or looking similar. It comes from being a unique human being — just like every other child. In our family, our daughter with Down syndrome is by far easier to parent than our typical twins. She easily fills the spot of the golden child — although that may change one day, who knows? Having Down syndrome can be synonymous with having a good life — both for our daughter and for our family as she grows up.” — Johanna R.

14. “When I ask you to do things a certain way I am not being a helicopter mom or overbearing. My child takes a little longer to connect the dots of actions and when you skip steps it can derail all of her hard work. She is a happy baby but not because she has Down syndrome, that’s just because of her personality. She’s just a happy person.” — Katie M.

15. “We are not sad — not me, not my husband, nor our two older daughters. Our lives are ‘normal.’ We wouldn’t change a thing. And I don’t mind answering questions or talking to people about our daughter. We love to talk about all of our girls!” — Melissa H.

16. “It is OK to ask me questions. Actually, it is more than OK to ask me questions. Knowledge is the best way to combat stereotypes and stop misinformation.” — Jessica DS

17. “My son has feeling, too. Life is not always easy now that he is a teenager.” — Rose S.

18. “As hard as it can get sometimes I wouldn’t change anything about this journey! I have learned to cherish the little things, never stress about the big things and find the humor in all things!” — Linda S.

19. “My daughter is just like her brother and sisters. Yes, her development is delayed but her personality and stubbornness are definitely a family trait.” — Angela K.

20. “She is perfect, and her life is not ‘unfortunate’” — Charlotte A.

21. “I have a daughter with Down syndrome who is now 27 and she has taught me so much. You grow together; you learn together. She has achieved so much and proved many people wrong, she is now engaged to be married to a lad with Down syndrome.” — Lynne P.

What about you, what do you wish people understood about your life or our child? Let us know in the comments.

Thinkstock image by gregorydean