Happy Down Syndrome Awareness Month! I think revisiting the question of what I would say to younger parents is a good post to celebrate our friends and loved ones with Down syndrome!
Four years ago I wrote a blog called “What Would Say 14 Years” later. That was in response to that very question from readers, cyber-friends and acquaintances. I even turned it into a speech. The basic question was, “Now that Rachel is 14 what would you say to the mom (or dad) of a baby or little one with Down syndrome.” Four years later, I’m revisiting the question and my answers haven’t changed much. I have added a couple of very important thoughts.
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 don’t remember who said it and I know it is cliché but someone told me “treat her as much like a typical child as you can.” Thank you to whoever told me that and it is one of the most meaningful things anyone has ever said to me. That is my advice! We did just that. We don’t have other kids but we have been around some great and not-so-great parents and have worked with teenagers through the years. I tried to think like she was a typical child. Clearly, most typical kids aren’t in therapies and such but when she was old enough to go to the church nursery she did, and she was treated like all the other kids. We did Mom’s Day Out and preschool, just like our friend’s kids. Time for dance and off we went. Micro soccer, t-ball, Kindermusik – whatever it was, we always looked for the typical activities for Rachel. In fact, that’s what we are still doing. That leads to my second point.
Be educated and educate. Notice I did not say, educate and be educated. You will hear over and over again 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 profess what is best for your child, you need to be educated though. Go to conferences and workshops and learn from other parents. 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.
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 aren’t 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 you need. There will be a day when you want to celebrate something that your friends, no matter how great they are, don’t quite understand because they don’t 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 at Harvard at the age of three have the audacity to tell you that you should be glad your two-year old isn’t walking yet. “When they start walking, they are just into everything,” they may say. 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. This is a great segue into my next thought.
It’s okay to have a pity party as long as you don’t 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. Things to do.” Now, go do it.
There will not be irreversible harm and your child may even thrive if they miss a therapy session. It’s okay to act like other people sometimes. It’s Christmas holiday so take a break and don’t feel guilty. You want to punt it all and head to the zoo because it’s pretty outside. Do it. Give yourself permission to not be perfect.
Laugh at yourself. Laugh at and with your child, your spouse, your friends. Laugh at others and I don’t mean in a disrespectful way. A little self-deprecating humor can keep you balanced. When I was about six months pregnant with Rachel (I had a prenatal diagnosis), and Jonathan had colorectal cancer. He was in the middle of his chemo and radiation regime. Our beloved Beagle Festas got this hacking cough.
He was on a heartworm preventative but a persistent hacking cough can be a sign of heartworms in a dog. So 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 don’t want to be the next big country music hit: I’ve got cancer, my baby has Down syndrome and my dog died.” We fell out laughing.
I do have one thing to add. Well, maybe two or three. Go open an ABLE Account. You’re going to need that money for college. Just like all your friends, start saving for college today. Enjoy the journey. If I have learned one thing from Rachel it is that there is joy in the journey.
Eighteen years later, that’s what I would say.