Down Syndrome Awareness Month- REAL Perspectives from REAL Local Families: Henry

This year, to celebrate Down Syndrome Awareness Month, we asked a few of our Playhouse families and friends to give their REAL perspective on what it’s like to love someone with Down syndrome. Throughout the month, we’ll be sharing their stories!

Meet Henry – Answers from Henry’s Mom, Cacy

How would you describe your child with Down syndrome? What are their likes and dislikes?

Henry is a fantastic 2-1/2-year-old boy who loves adventure. Some of his favorite activities are: camping, swimming and throwing or kicking a ball. He is a huge lover of music!

What has been the biggest misperception about Down syndrome that you have experienced or encountered?

The biggest misconception for us is that having a child with Down syndrome would take away all the time from our other children, making them feel not as loved, and possibly causing resentment.

We were completely wrong! Our family has grown even stronger since Henry has come into our lives. If you asked all three of his siblings who their favorite human in the world is, all their answers would be Henry!

What are some wins Henry has had, recently? What challenges is he working through?

Henry is a very independent boy and loves to push himself to learn new things. It works out to his advantage, to be so independent, because it has allowed him to push through milestones quickly.

He recently started going to preschool, two mornings a week. Considering he has never been in daycare, it has turned into quite a challenge for him (mommy, too).

Three weeks later, he has pushed through, made friends, learned the routine the teacher set out for the class and is flourishing! He is learning so much! I have also learned a lot! I have learned that it is okay and wonderful and incredible for him to grow, and for me to let him go, a little bit!

What have been your most valuable resources?

First is GiGi’s Playhouse Madison – a great resource for Henry to make friends, and for our family to meet other families and share advice, or just to listen and support each other. Henry just started speech therapy at GiGi’s and we are so excited to see his speech skills grow!

Second is the book: “Nourished Beginnings Baby Food,” by Renee Kohley. This book has been a game changer! It gave me the tools I needed to make all of Henry’s food. We chose a gluten and dairy free diet for him before he was born. We also added cod liver oil and probiotic to his food, every morning since he was six months old. Henry has not had to struggle with ear infections, constipation or had to take an antibiotic, in his life. I really feel like the decision we made, in regard to his health, has paid off thanks to this amazing book!

What advice do you have for families who have a child with Down syndrome, who aren’t as far along the path, as you are?

Research, research, research!

Right after we got Henry’s diagnosis (I was about four months along), I dove into research. I wanted to find out what possible complications kids with Down syndrome face. I focused on the complications that could be preventable. The complications that, just maybe, I could keep him from ever having to face:

• Reflux
• Diarrhea
• Constipation
• Obesity

The research I did is what led us to the gluten and dairy free diet we chose for Henry. When our kids do not have to face these complications, it can make life so much easier for them. They can focus more energy on learning, playing and loving.

The best we can do is to love, encourage and let them know they have no limits!