A Parent’s Perspective on Inclusion

Written by Ann Poirier

My seven-year-old daughter Alice has Down syndrome. When she was born, I remember looking at her and wondering why she looked “different.” Her face was flat and her eyes looked a little different than my other daughter’s eyes. She was really squishy when I held her. I asked the doctors and nurses why she looked the way she did and they all ignored me. I didn’t think anything of that and just held my new baby girl and told her I would be her mom. My husband and I were 32 years old at the time and we were just so excited about growing our family.

An hour after Alice was born, a neonatologist came to my bedside and coldly said, “We think your daughter has Down syndrome.” Immediately, I felt my heart sink and I started hysterically crying. In a moment where I desperately needed some reassurance, the doctor left. I never saw her again after that.

That day was beyond overwhelming for me. I cried a lot and asked God to help me because I had never felt so lost. As someone who had hardly even heard of Down syndrome at the time, I really didn’t even know where to begin. I was completely terrified.

How would I ever be a good enough mom for Alice? How would I know what to do? What about our other daughter? What about our marriage? What about our families?

On a more practical side, I thought of questions like: Would she see a regular doctor or a different doctor? Would she go to a regular school or a different school? Would she play regular sports or different sports? All these questions – and many more – sped through my head.

The only way I can describe the transformation and peace that happened within in those first few days, weeks and months is to say that God took hold of my life. I have never felt so peaceful as I did once I asked Him to guide my steps and show me the way because I didn’t know where to go from there. Before I knew it, I was advocating for my daughter in ways that I can only say came straight from Him.

As Alice grew and as I learned more about Down syndrome, one of the biggest lessons I learned was that there was no rule for what she would or wouldn’t do. Instead, we were creating those rules as we went. And I decided that Alice would do whatever she wanted to do and whatever I gave her the opportunity to do. I wasn’t going to ask permission to have her be somewhere or do something – I was just going to have her show up.

So now, seven years into our journey, here’s my unsolicited advice for all Down syndrome parents…

Put your child in typical activities.

When you sign them up, don’t ask if it’s OK that your child has Down syndrome or “warn” them that your child has Down syndrome.

Show up on the first day with your child with Down syndrome and watch them play with all of their typical peers.

Watch people see what Down syndrome really is and discover just how amazing your child is when given opportunities like everyone else.

Repeat for their lifetime.

These kids come into the world with people doubting them right off the bat and coldly telling their parents about their diagnosis. Shift that narrative. Show the world they’re meant to be here – and so are you.

Ann, thank you for your courage in sharing this chapter of your family’s story. Your honesty and passion for inclusion speak volumes—and your advocacy is already helping others feel less alone. To every parent reading this: you are seen, you are supported, and you are never walking this road alone. Together, we’ll keep showing the world what individuals with Down syndrome are truly capable of.