Guide To Parenting A Child With Down Syndrome

Everything you need to know about parenting the most lovable children.

Ellen Haws July 12, 2017

Considering adopting a child with Down syndrome? As the mother of a child with Down syndrome, I want to encourage you. Our son has been the best thing that has happened to our family. It has been hard and our life is now different than most, but if you feel drawn to special needs adoption hopefully these details can help you decide. I have collected the questions that people ask me about my son and put together a little guide. These items are things to consider before placement.

And if you haven’t already read the How to Adopt a Child with Down Syndrome, you can do so here.

How does having a Down syndrome child affect your family life?
1. How does having a Down syndrome child affect your family life?

Our son has immensely improved our family. He lives life with an unparalleled depth of joy that you can’t help but try to emulate. He is delayed in most of his development and yet he continues to try and work towards his goal. Again, a trait I try to learn from him. Day to day these delays impact our family depending on our activities for that day. Most of these can be overcome by planning in advance by me, his mom. I have to be more deliberate when I pack my backpack for the day. Do I have diapers, food, and a sensory toy? We try to choose activities that aren’t too stimulating or loud, as he gets overwhelmed easy. For example, when the Fourth of July comes around we have started talking about how to do fireworks this year. Our four year old is thrilled, but it is a scary, overwhelming experience for our son with Down syndrome. As a family we work together to come up with a plan that makes everyone happy. Last year, Dad and brother lit fireworks in the driveway while Elliot and I watch through the window. It worked great! We make accommodations because we love him and we know he does the same for us when he can.

How many doctors/health concerns does your child have?
2. How many doctors/health concerns does your child have?

Our son does have a large number of doctors and medical concerns. We were eight months into his life before he had a week in his life that he didn’t have to see the doctor. However, Down syndrome is such a personalized diagnosis. Just because our son sees a neurologist, cardiologist and gastroenterologist (to name a few) doesn’t mean every child with Down syndrome will need to see the same doctors. It is important to understand that a third copy of the 21st chromosome does not impact each body the same way. Yes there are many commonalities, but each individual is very different. As of now, individuals with Down syndrome qualify for Medicaid. This helps to defer the cost of medical treatments.

How many therapists does your child have?
3. How many therapists does your child have?

Our son currently receives speech, physical, and occupational therapy. He has also had feeding therapy and may need different therapies in the future. Yes, this means more appointments for your child. However, in my personal view, I have come to love therapy! This is the chance for me and our son to learn how to improve his life. We learn different ways to communicate, the right way to get up from sitting into a standing position, and how to hold a spoon correctly. It is life skills boot camp! These are the things I can do each day to help him to improve. In truth, I wish I had this much help learning how to help my other children.

How does Down syndrome affect school for your child?
4. How does Down syndrome affect school for your child?

Ok, sorry to sound like a broken record, but you need to remember that each child with Down syndrome is so different. Many children with Down syndrome are able to follow mainstream and attend typical school classes. Some need an aid in class with them while others attend special needs classrooms. All are good when chosen with your child’s best interest at heart. The process is more complicated as your child will need an Individualized Education Plan, which involves several meetings a year. This process can be hard, but the ultimate goal is to find the right fit to help your child be as successful as possible. But again, I sort of wish I could do an Individualized Education Plan for all of my children. I truly believe all children could benefit from teachers, administration, and specialists sitting down to discuss how an individual child learns, where they are excelling and where they are lacking, and then coming up with a written comprehensive plan that includes trackable goals.

Eventually, everyone asks me about the love.
5. Eventually, everyone asks me about the love.

Most people have experienced a loving exchange with an individual with Down syndrome and every time people ask me about my son at some point they want to discuss the depth of love they have for others and for life. My father-in-law once said, “Maybe we are the ones who are special needs. They seem to understand life more than we do.”

And guess what? We might be. Our son has hard days, he does get grumpy, he gets mad, but even at the end of the worst day ever what he really wants is to climb into my arms, wrap his arms around my neck and push our hearts together. He loves with a depth and understanding that eludes most of us. And being a recipient of that love is worth any extra planning, doctors’ appointments, or education plan meetings I attend.

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Ellen Haws

Ellen Haws is a writer and stay-at-home momster to two boys. She is an advocate for special needs individuals and special needs adoption. She created and is administrator of a thriving Facebook group that promotes and hosts events for special needs individuals and their families in Arizona. Once her hausfrau duties are finished, Ellen can be found creating sarcastic cross stitch art for her loved ones.

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