5 Tips for Parents to Process Their Child’s Down Syndrome Diagnosis


I am not a “seasoned” mother. My son with Down syndrome is not quite 10 months old. I realize there is so much left for me and my family in this journey ahead. There is so much I will learn. However, I feel as though I can offer some advice for those just starting their journey in the world of Down syndrome.

Postpartum life is difficult, whether your child has a disability or not. I remember when my first son, Syler, was born, I had a couple of weeks of the baby blues. I did not understand how I could be so happy and yet so sad at the same time. It made no sense! Thankfully, it never developed into postpartum depression with either of my children. Along with fluctuating hormones, the postpartum time can bring discomfort in all sorts of ways you did not expect. Add in a Down syndrome diagnosis, and you may feel out of control.

Arbor was diagnosed with Down syndrome at birth. I had no time to adjust to the diagnosis before he was born, so there was a lot of stress in the first few weeks of Arbor’s life. If you are a brand new mom and happen to be reading this, I hope these tips I share will provide a bit of help for you.

1. Take some time alone to process everything. This would apply to both a prenatal and birth diagnosis. In the days following your baby’s birth, people will probably want to visit and snuggle your precious bundle of joy. Whether you have visitors or not is obviously up to you, but be comfortable telling them you need time alone as a family if that is what you need. I needed family time more than usual and enjoyed visitors, but that may not be best for you during this time. I did most of my processing at night when I was nursing Arbor. It was the only time I was completely alone to think over everything.

2. Ask for help. I was blessed to have family willing to keep my toddler overnight, bring my family meals, buy us baby clothes (Arbor was born a little early and we didn’t have premie clothes), go with me to Arbor’s endless appointments and watch our kids so we could go to church. If there is anyone you trust and is willing to help you, by all means, ask them!

3. Buy a planner and use it! I am scatter-brained. If something I need to do is not written down, I will forget it. Having a planner that is easy to use (bonus points if it is cute) is essential. Write every appointment down as soon as you make it! I don’t know how many doctor’s appointments Arbor had in his first few months of life, and it is almost stressful to try to remember.

4. Give grace to those who do not understand. It goes without saying, but most people do not have a child with Down syndrome. Some questions people ask you may seem odd to you, but remember that at one time you may have had the same questions.

5. Remember this season doesn’t last forever. The first month or two of Arbor’s life made the journey ahead seem daunting. Looking back, it was overwhelming, but it was a short season. You may wonder if it would be easier to pack a suitcase so you can just live in the doctor’s offices you will be visiting. Take each day as it comes instead of dwelling on tomorrow.

You are going to rock this life as a parent of a baby with an extra chromosome!

Follow this journey on Instagram.

We want to hear your story. Become a Mighty contributor here.

Related to Down Syndrome

Remembering My Pregnancy With a Prenatal Down Syndrome Diagnosis

I radiated happiness now that I was finally pregnant. The past 9 months had been a bit trying: making sure I could get pregnant and stressing about getting pregnant. I remember that beautiful summer day, when I got that first reassurance there was a little life inside me. I remember the joy of seeing that [...]

23 Celebrities and Public Figures Who Love Someone With Down Syndrome

As a parent of a child with Down syndrome, I often wish there was more media representation of families like mine. After all, Down syndrome is the most common genetic condition in the United States — one in every 700 babies is born with Down syndrome. While there might not be enough shows or other media outlets [...]

A Journey from Inclusive Schools to Working on Capitol Hill

This week, in honor of Inclusive Schools Week, the National Down Syndrome Society is sharing real stories about how inclusive schools have made a difference in the lives of families of a child with Down syndrome. In elementary school, I had a first grade teacher who helped me become fully included. She likes to take credit for [...]

Together We Can Fight Smarter for Inclusive Schools

This week, in honor of Inclusive Schools Week, the National Down Syndrome Society is sharing real stories about how inclusive schools have made a difference in the lives of families of a child with Down syndrome. My son, Tyler, attends a small charter school in a more rural area where understanding full inclusion has been a challenge. [...]