Most people love meeting my little dude. He’s ridiculously cute and so people automatically fall for him. Down Syndrome has given him beautiful almond shaped eyes, perfectly cute ears, and beautiful skin. We are often stopped in restaurants and grocery stores because people want to interact with him. They want a moment with the love he clearly possesses. Everyone’s heart lifts when he smiles, especially when he smiles directly at you. But truthfully, it very rarely goes that way.
See, my son has a second diagnosis; this one doesn’t show physically. Our son’s second diagnosis is autism. And so he might not smile at you, no matter how hard you try. He might not even glance up at you. And he for sure is not taking a candy or a sticker from you. That’s a definite no-go. I’m always caught off-guard by people’s disappointment when he doesn’t deliver what they expected. It’s a bizarre moment. Do I apologize? Do I jump in and try to get him to perform? Do I explain he has autism and struggles with eye contact? Do I make excuses to soothe your disappointed expectations? I don’t do any of those things because he is a child and he is trying.
I asked several of my fellow Down Syndrome mamas what they’d want people to know. We decided if we could make a wishlist of things we’d want you to know about our children, it would include these items:
1) Always say “Hi.”
Even if they don’t react like you expect, they heard you and it was important to them you recognized them. Allow them to be different and accept the interactions and love when they come because they will come; our kids wants to get to know you but it needs to happen at their pace. The more patient you can with their unique pace, the quicker they will come to you. And, always, always include them. Our children will do some things differently, but they will always love being included.
2) Please believe me that we are not overacting about medical concerns.
Most of our children are immunocompromised. So if you have a cold, or a cough, please stay home. My friend Robin said, “Our struggles are real, our highs are great and our lows are more than I can bear sometimes. It does feel isolating sometimes.” See, your kids have a mild cold, but the same cold can put my kid in the hospital. Be courteous of germs and keep us all together.
3) There are a lot of people involved in his care.
Robin continues, “Sometimes it is everyone else that makes raising a child with a disability so hard. Dealing with the school, therapist, doctors, specialist etc. . . . Don’t get me wrong, I am very grateful for them all, but sometimes all the help just makes it hard. Hard because someone always has a say about your child, always.” It is true, and we are all grateful for professionals, but it does always feel like you have extra mom homework. And some extra weight to carry as you worry about whose opinion is right and are you doing enough?
4) We are lucky.
We are loved and love immensely. Our highs are amazing, but it is also hard. Please try to be supportive even if things don’t occur the way you expect, and don’t give up. Once you make friends with our children, you will have a friend with ferocious loyalty and loving devotion.