What I Want New Parents of Children With Down Syndrome to Know

Happy Down Syndrome Awareness Month! I am often asked what I would say to new parents and parents of younger children with Down syndrome. Twenty-one years later, this is what I would say.

I want to start by saying congratulations. You are not alone. You have a tremendous support system in the Down syndrome community and beyond. Keep that tucked in your heart and mind.

I do not remember who said it and I know it is cliche, but when my daughter was born someone told me, “treat her as much like a typical child as you can.” That is one of the most meaningful things anyone has said to me, and that is my advice, too. We do not have other children, but we have been around some great and not-so-great parents and through the years, we have worked with teenagers in church and the community. I tried to think like Rachel was a typical child.

Clearly, most typical children are not in therapies and such, but when Rachel was old enough to go to the church nursery she did, and she was treated like all the other children. We did Mom’s Day Out and preschool — just like our friends’ kids. Time for dance and off we went to a typical dance studio. The same for soccer, T-ball, Kindermusik — whatever it was, as a starting point, we always looked for typical activities where she could be included. It was not bump-free, but I think it is a large part of why she is who she is now.

Be educated and educate. Notice I did not say, educate and be educated. You will hear repeatedly that you know your child best. You need to know that, believe that and proclaim it. Practice it in the mirror and believe it unquestionably. When you share what is best for your child, though, you need to be educated. Go to conferences and workshops and learn from other parents and adults with Down syndrome. Utilize dependable online resources and study the research. If you educate yourself, you will be able to educate others. Those others may be family and friends, and they may be teachers, doctors, and other professionals. You will be able to call the coach, teacher, or preschool director and tell them about your child and help them know how to work with your child and some of the research behind what works.

Find a support system with real live people. Facebook and social media outlets are nice, but try to find some real people who have walked or are walking in your shoes. If you live in an area and there are not many folks with children with Down syndrome, find someone with a child with another disability. You will have many things in common, and you will need them. They will tell you about the best healthcare professionals and activities, and they will tell you about programs and resources you need.

There will be a day when you want to celebrate something that your friends, no matter how great they are, do not quite understand because they do not have a child with a disability. These will be the people who will understand when your friend who has three children who all talked early, walked early and were accepted to the college of their choice at the age of three have the audacity to tell you that “you should be glad your 3-year-old isn’t walking yet. When they start walking, they are just into everything.”

They will understand that words really do hurt. They will celebrate what seems mundane to many parents, and they will hold your hand and listen when you are just tired of it all. They will also be the people that join you in advocating for systems change right where you are.

It is OK to have a pity party — as long as you do not stay stuck there. In fact, I highly recommend a good pity party from time to time. This journey is not for the faint of heart or weak, so from time to time you need to have a pity party, pamper yourself, whatever. Then, look in the mirror and say, “Time to be over this pity party. I have things to do.” Now, go do it. As an aside, be in tune with your emotions and if you find yourself stuck, seek help. There is no shame in that.

Most likely, there will not be irreversible harm and your child may even thrive if they miss a therapy session. It is OK to act like other people sometimes. It is a holiday break, so take a break and do not feel guilty. Want to punt it all and head to the zoo because it is pretty outside? Do it. Give yourself permission to not be perfect.

Have high expectations and share those with others. Yes, you will have a few people on this journey that will not get it. You will also meet people on this journey who want to get it and need you to show them how. Think about where you want this precious child to be at 18, 21, or 25. Remember, your child is valuable just because he or she is and not because of anything he or she does or doesn’t do. Every single one of us has strengths and challenges. When I found out by prenatal diagnosis my daughter had Down syndrome, I remember thinking “she will never be an Arkansas Razorback cheerleader.” Of course, I did not really know that. It was just my perception. More importantly, I wasn’t an Arkansas Razorback cheerleader either, and my life has been pretty good.

Finally, laugh.

Laugh at yourself. Laugh at and with your child, your spouse, your friends. Laugh at others and I do not mean in a disrespectful way. A little self-deprecating humor can keep you balanced. When I was pregnant with Rachel, my husband Jonathan had colorectal cancer. We were about six months into both journeys, and he was in the middle of his chemo and radiation regime. Our beloved Beagle Festas got this hacking cough.

Festas was on a heartworm preventative but a persistent hacking cough can still be a sign of heartworms in a dog. After listening to him hack half the night, Jonathan looked at me and said, “You should probably take Festas to the vet today. With our current luck, he probably has heartworms, and I do not want to be the next big country music hit: I have cancer, my baby has Down syndrome and my dog died.” We fell out laughing.

Enjoy the journey. If I have learned one thing from my Rachel, it is that there is joy in the journey.

Twenty-one years later, that is what I would say.