This post does not reflect on the vast majority of the people in Thorin’s life who do not have Down syndrome or how he or Ward or I feel about them
Earlier this week I had a phone conversation with a father whose daughter has Down syndrome (DS). He described picking her up at pre-school on many occasions to find her off on her own in the midst of larger and smaller groups of typical kids playing together.
I could relate. It is a scene I find Thorin in at his pre-school often. This father talked about how it made him feel to see her away from the others.
I told him I had the same feeling but I also saw Thorin didn’t seem unhappy playing alone. I said, “He’s good company for himself – something a lot of adults can’t say for themselves.”
He agreed. But we both acknowledged we still had that feeling. Actually, there are two feelings. One, you ache to see your child playing with other children as a full-fledged peer. Two, you wonder if they miss that experience, too.
Last night we went to the children’s museum. The local Down syndrome parents group had rented it out for the evening. Aside from attending conferences as a family this was our first foray at a DS family event.
There were children with DS who were babies up to ten or eleven years of age. They all shared particular characteristics – exquisite almond-shaped, slanted eyes and beautiful small, flattened noses. Most were on the small size but in this group Thorin didn’t stand out as the littlest. He was typical among these peers.
For the first time we saw him interact in a group where he didn’t need language as an entrée into the inner circle. Sure, there was talking, yelling, laughing, screaming and crying. (He did his fair shared of each.) But, if you couldn’t communicate verbally as well as someone else it didn’t exclude you from participating.
There was a small stage with a trunk of costumes children dipped into and become – knights, queens, floppy eared dogs and dinosaurs. Two children about ten years of age were in the process of staging a production. Thorin ambled over and joined them. He saw the play was taking turns introducing someone from behind the curtain. The spotlight was on each child for a period of time. The parents were seated in a mini audience area. We clapped enthusiastically for each performer. When it was Thorin’s turn his face beamed, he bowed and said, “Thank you! Thank you!”
I was laughing and clapping. The feeling I had was the antidote for the ache. I was witnessing complete acceptance for Thorin rather than a tenuous acceptance. This acceptance wasn’t just by his peers but by the parents. There was an unspoken kinship among us. I saw it in the way we adults looked at each other’s children.
Looking at so many children together with DS I saw they could be a separate race of people. They looked similar – which is different than they all look alike.
This morning Ward asked, “Do you think he knows he looks like them?”
Honestly, I don’t know. The same way I don’t know if he notices people stare at him on the street, on the playground, in restaurants, at the mall or any number of places.
What I do know is that for one night our son was one of them. He belonged.
The National Down Syndrome Congress uses what I think is an effective and apt message – “More alike than different”. Meaning people with Down syndrome are more like all people than they aren’t. But is that message is for us typicals more than anyone else? Do we need the reminder?
Kari, It was great meeting Thorin, and seeing you. I think the last time I saw you was at the film presentation you gave at the college on Deering Ave. Kelly said that WAS a long time ago. YOur insights as a concerned and loving parent are, in my opinon, a must for all parents and caretakers and therapists. You have always had such a quick wit and the ability to write it as well as say it. I know my sister-in-law never got over the guilt of birthing a nontypical child. My brother was more like you, where he could see goodness instead of shame. Please know you are the first thing I read when I get to town once a week for laundry, groceries, mail, and a subway. I am usually at Mickey D’s, since they have the only wi-fi in the town of Millinocket. I hope it is not such a long time before I see you and thorin again. PS If you ever want to get away my key is in the mailbox to my condo. You could have a little vaca. Love, Betsy
Great to see you too! The first thing you read – Wow. That might be the best compliment ever. Thanks for commenting and your note made me realize I should write more. XXOO, k
i HOPE YOU DO WRITE MORE. hAVE A GREAT SUMMER. B AND L
You, too! And I will!