*This is a special guest post by mom and pediatrician, Dr. Abbie Smith*
I am a fellow Dr. Mom like Melissa. I am slightly different from Melissa in that I have a child who just happens to have been born with Down syndrome. Since October is National Down syndrome awareness month we thought it would be a great opportunity to talk a little bit about what it’s like to be the mom of a child born with Down syndrome.
Although our children may have different needs, I think you will find that they are more alike than different. I thought I would share with you some of my tips for parents who have children with a visible diagnoses as well as tips for parents of their peers.
I think one of our biggest fears as parents today is bullying. When your child has a medical diagnosis that is visible to the world those fears multiply.
My son, Noah, happens to look a little different thanks to his extra chromosome. Down syndrome means that my child has three copies of his 21st chromosome and therefore he has physical characteristics that are specific to his diagnosis.
My Kid Doesn’t Want To Be Made Fun Of Just Like Your Kid
I fear that Noah will be made fun of for his visible differences, something he had no control over. It isn’t a shoe he put on, or a funny hairstyle, it is part of who he is. We worry about the day he comes home and tells us that he was teased because of his eyes, or the way he speaks. Regardless of diagnosis, you probably also fear your child being bullied.
I am going to do try to do my part to make sure that Noah is included with his peers. Children are usually fearful of the unknown and are quick to point out what makes a child different. We are a few years away from school, but I anticipate going into the classroom and discussing with his classmates why he may look different, speak differently, or have trouble learning so they understand Noah.
Don’t you think bullying comes from a lack of understanding sometimes?
I encourage parents who are dealing with a new visible diagnosis to get in the classroom to help other children understand what is going on. I want to answer the kids questions and make sure they know that above all else, Noah wants to play at recess and learn to read just like they do.
There are several resources to help you explain a visible difference in language a child will understand; from kid’s books for a specific diagnosis to websites such as kidshealth.org, and even your pediatrician.
If your child does not happen to have a visible diagnosis I think you have a part as well. If there is a child like this in the classroom, I hope you help your son or daughter understand that it is not ok to make fun of them (I will make sure to tell my child the same thing).
If you need help explaining the differences to your child, I am willing to bet that the other child’s parent would gladly answer questions for you. Encourage them to also stand up for the child if they are being teased and to tell the teacher. Your child can become an advocate for those who may not be able to stand up for themselves.
My kid Wants Friends Just Like Your Kid
All of our children want friends. Sometimes it is hard, especially if you may appear to be different than what a child is used to. Children with special needs are often separated from the classroom limiting their interaction with typical children. You can help foster these friendships by encouraging your child to reach out and meet one of these kids. It could be a life changing friendship for both children.
Some schools even have programs where your child can become a buddy to those in special education. Outside of the classroom you can walk up to the mom at the playground who brought her child with special needs and make friends yourself hoping your little ones will get along.
Can you imagine the world we would live in if we stepped out of our comfort zone to be friends to those who are not just like us?
My kid Wants to be invited to parties just like your kid
Do you ever worry that your child will never be invited to birthday parties? I sure do. I worry that the child’s parents will think they won’t be able to manage my child with special needs and thus will be afraid to include him. I encourage you as parents to take the risk. Offer the invite. AFTER the invitation, talk with the parents about how you can make it enjoyable for their child. It could even start with just a play date to see how things go.
We aren’t looking for a pity party but simply to have our children thought of as valuable members of the community and that their presence at the party is worth the extra effort which is most case is minimal. Sometimes it takes active measures from both parties to break down the walls between our children and then you will find out that my kid is a lot like your kid. (By the way we’re thankful Noah has lots of great friends who invite him to their parties.) 
Have you had a chance to talk to your children about children with special needs? If so how did you help your child understand that children like Noah are more alike than different?
*Dr. Abbie Smith is a pediatrician in Dallas, TX and the mother of a child born with Down syndrome. She enjoys helping people learn what it’s like raising a child with Down syndrome. She and her husband are creating an online narrative about about their son on their site. Be sure to check out their blog, and YouTube Channel to stay connected to their story.*
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This is a beautiful post. My daughter has special needs. I used to teach Sp. Ed. and Kindergarten. It was always interesting to see what children helped children with special needs. They are the future teachers, doctors, nurses, social workers, pastors.. Sharing this. He’s beautiful!
I have taught special Ed in a preschool setting and have seen that young children (under 4) do not see differences in themselves and their peers and it is those children that have been exposed to children with disabilities (visible or not) and been able to foster relationships are less likely to call attention those differences later on. If they do call out the differences it’s more as a question to help themselves understand better. My suggestion for parents of both typical children and those with disabilities is to reach out when your child is young and give them opportunities to interact with a wide variety of children whether it is a play group, a school setting or at the park.
Wow – I have had those exact same thoughts and in fact was at the Drs one day bawling my eyes out because (amongst other things) was worried that my daughter wouldn’t have friends and wouldn’t be invited to birthday parties. My daughter has DS too and is now 3 1/2, hopefully I won’t have much to worry about… she goes to daycare 2 x week and is loved by her little friends there. She is also adored by her older brother and sister’s friends, who are very accepting of her. She is always out and about in the community and just about everyone in town knows her (who could not remember her killer smile). I will always worry about all of my children and I suppose that is just part of being a mum, but there is definitely a more pronounced worry when your child is physically different from the others. Abbie, Rick and Noah, you guys are doing a great job spreading awareness about DS to the world. Thank you. xx
Yo tengo una bebe con SD, y ella tiene una hermana melliza que no tiene SD y un hermano de 5 años. Que difícil será explicarles que su hermana tiene una condición diferente a la de ellos. Y que miedo me da el bulling que pueda sufrir mi niña. Tanks For post, this fear is For all parents. I’m sure.
Juanita
I so appreciated this insight, as I am a mom of a child who has been diagnosed with Down Syndrome. Liam is 9 months old, but I too, am fearful of the day that he goes to school and comes home to tell me that he has been bullied. He does have a twin brother who will be there to watch out for him and an older sister who will do the same. I am also fearful that putting this pressure on his siblings will foster resentment.
As an Educational Assistant, who has worked with Special Needs children for 16 years, I know that there are more understanding children out there than not, but there is always that one who becomes a bully. I do believe that with knowledge comes power and understanding. Lets hope with this knowledge, we can have a world that is more accepting of our flaws. We all have them, just some are more visual than others. I love hearing Noah’s stories and they have helped me become a better Mom and person. So thank you Abbie and Rick for sharing your story. Its is an amazing ride and I am enjoying me own path with ALL of my children. Thanks again!!!
I agree with the “more alike than different” philosophy. We have 3 kids, all with different needs, one with Down Syndrome. She is 16 and doing wonderfully. She tends to be our “easy” kid out of the 3. Don’t get me wrong, just because she has been an easier kid, I do not mean she has not been challenging. I’m happy to say she loves school, life, everything. I think in someways she gets included more and bullied less than our other kids since everyone is on the look out make sure it happens for her. Good luck and enjoy!
great post abby i think all parents should do this then there wouldnt be bullying in the schools. i know i use ricks posts with ryan my son we watch the videos together ryan says noah isnt that different than me mommy he may take longer to learn something but who says how long it takes a kid to learn to walk or talk .he said god made him n me different cuss if we all were the same then why make so many people . when we watched the video of noah walking in the library ryan cheered n said way to go noah you got it . n the video of him sitting on the table watching tv ryan said mommy i do that its fun to sit on the table. its something different noah is smart he thought of that like i did. ryan said last night when we watched the videos of noah being a monkey n climbing all over his toys ryan said yep hes like sissy cuss aimee climbs all over her toys . then ryan said noah isnt that different than me or sissy . id be his friend in school if we were in the same class . thanks for sharing this post with all of us .you n rick have a great son .
After reading more of the comments from younger parents (parents of younger kids) I totally agree that exposure/inclusion is what worked for us and those around us! Dev was in everything–dance, gymnastics, soccer, preschool, elementary… all “regular” classes. In hind sight, it was for her and for the peers. I agree that most kids saw little difference until about 2-3 grade, that is when going into the class is essential. Point out all the similarities (who has sibs, likes cake, to swim) and explain a few of the differences (she has a hard time feeling the snot on her nose, so just offer her a kleenex… it’s hard for her tongue to make “….” sound, who else has trouble with “…”) Be sure to come up with some cool things your child can do–who has been to this great… who’s mom/dad makes the best… so that the kids are interested in doing more with your child. Then invite kids/families over and enjoy! There is more information about our journey so far on our website if others are interested.
Just hopping over from “love that Max.” to say hi! Great post and website. ~ Jamie
My husband’s sister has Down Syndrome, and so does our neighbor’s child. So our young daughter (3yo) has had the opportunity to get to know that even if people look different, deep down they are the same. And that there is no reason to treat them differently. She loves the little baby w/DS across the street from us, and I’m glad she is growing up learning to have an open heart and an open mind.
She has issues that are not visible. She has a significant speech disorder and she has seizures. I worry about a lot of the same things you write about here. She hasn’t had a seizure in her preschool classroom yet, but I’m so afraid of how the kids will act if she does.
The most important message in your post is one I work hard to spread. It starts with us. The parents. How are kids feel about and act toward others is shaped in large part by our attitudes and behaviors, the example we set for them and the lessons we work to teach them.
Thank you for sharing your son with us!
I love this article, every word is just so true. It is exactly how I feel. Thank you.
Beautiful post, and very inspiring. The visible piece you mentioned, reminded me of a story last week: The Nanny of one of my clients (he is almost 3yrs old) has speech delays. While playing at school last week, the Nanny heard one of his peers tell her Mom, “well he doesn’t talk.” The worse part was that 1) he does talk, and 2) the Mother didn’t respond appropriately to the daughter. I wasn’t there, so I cannot fully give more details, but the ignorance kills me!
I’m not sure the parent of the peer would have known how to respond as it is possible she does not know the child well enough to comment on his speech abilities and since it is the child’s peer I’m not sure they would be able to accurately describe the other child’s speech abilities. As such, the only one I would be frustrated with is the nanny who knows the child and can articulate to both the mother and peer what his abilities are
Great post! Early exposure is key, especially as the kids progress in school. As the “regular” kids grow with the “different” kid, they’re able to accept those differences and then ignore them and teach others by example.
I’m 40 and my older brother has DS. In “our day” integration was not an option. Because of my experiences, I’m honestly still a bit leery of it in practice, because I’ve seen first hand how people – kids and adults – react to my brother when they first meet him and it generally isn’t pretty. I learned very early that ignorance is rampant. The only thing that will cure that is information, exposure and time.
On the upside, while I know my brother understands and feels uncomfortable at the looks and comments that come his way (although I’m certain he doesn’t understand *why*) he doesn’t hold on to it, he shakes the incidents off almost immediately and moves on. I wish I had that skill.
So good luck to all those out there raising special needs kids!
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As a mother of a special needs child, I loved reading this post. Thank you for your thoughts.