This guest post in honor of World Down Syndrome Day is from Kari Wagner-Peck, mom to Thorin. Keri is an awesome writer and advocate who blogs at Atypical Son, and her post It’s an amazing reminder about all the abilities children with special needs have.
Kari and Thorin
I often say to my son “I could have never done that at your age!”
I’m not saying it to make him feel better about having Down syndrome. I am also not saying it because I can’t believe someone with Down syndrome can do those things. I am saying it because it’s true. Thorin is more advanced in many ways than I was at the same age. My 82 year-old mother a.k.a Bubba to our son can attest to my earlier life challenges.
In no particular order the following are skills my seven year old son possesses that I did not at his age:
1. He is comfortable in large groups.
Thorin attends our city’s recreation program at his elementary school after class three days a week. In attendance are upwards of 50 kids between 5 and 10 years of age. It is loud, chaotic—and, there are 50 kids! He loves it. At pick up he is mostly found in some melee of a game in the gym. He pleads to stay when either of us arrive. He is there to have fun and he does. I could not do that with 50 adults today.
2. He is an enthusiastic volunteer.
Thorin started dusting at three. I have no idea where he saw that particular behavior but he did see a job that needed to be done. He cleans his own room and takes his laundry to the hamper. My husband, on the other hand, leaves a trail of clothes throughout our apartment that starts at the front door.
Our son offers to help at the grocery store and puts away the groceries. He insists on holding Coco-the-mini-dachshund’s lease on walks. One of his most frequently used sentence, “I want to help!”
My mother has assured me I volunteered to do nothing that might have assisted her—a working mother in a household of six people.
3. He is an accomplished self-advocate.
Our son had to tell me to stop walking him into school at morning drop off. It took me longer than it should have to let go of that duty but he was patient with me. I was sort of a clingy kid.
Thorin had me tell the school he wanted to go to the bathroom alone. No standing outside the door waiting for him anymore. He has also made it clear at school to other students he does not like to be patted on the head, picked up, hugged without permission or helped unless he asks.
4. He possesses social grace.
Thorin’s eating habits at snack time in his classroom have been described by staff as sophisticated. He sets up his desk with his preferred menu of hummus, crackers and juice sitting with his legs crossed and eats with his pinky extended. It can take upwards of 45 minutes to finish eating. The school had initially been “accommodating” him for what they perceived as a developmental delay in eating habits until they realized as we had at home he favors a leisurely European style of dining.
Thorin sets the table at home insisting on using matching place mats and cloth napkins. This includes the nights we sit in front of the TV to eat. Growing up we used cloth table settings three times a year and I had no idea where we kept them. They just appeared.
I still get a little nervous at “fancy” restaurants.
5. He is a committed student.
Our son works harder than any typically developing peer in his school period. Aside from time in a regular classroom he sees a speech therapist, an occupational therapist and a physical therapist. He also attends speech therapy outside of school twice a week.
At night and in the morning before schools he does his assigned homework plus the additional writing, vocabulary, reading and math necessary to retain information. He is also learning a new augmented communication device that has been described by all staff as “cumbersome and difficult.” When I asked our son how it was going his eyes filled with tears.
What I remember best about first grade is how much I liked the word “cake.”
Sometimes I think even people who know him best do not realize how hard he works. Often he gets educational toys as birthday and Christmas gifts. It reminds me of the year one of my Valentine’s Day gifts from my husband was a steam iron. I had to break it to him that particular gift made him appear not very romantic, and the lack of an iron is not what got in the way of me ironing.
6. He is a gifted photographer.
Thorin started taking photographs without us knowing. We didn’t realize his iPad had a camera until I discovered about twenty selfies, a photo of a box of Life cereal (his favorite) and one of Walt-the-German-Shepherd. Since then he has taken hundreds of photos including three different self-portrait series.
A photo he took at a local county fair where we live in Maine
His photographs have a distinct point of view. These are intentional images. He takes a photograph and assesses it. If he is satisfied he moves on. If he does not like it he re-takes the image until he is. Some of his photos were displayed in an exhibit case in the front hall of his school. He also had three photos published in the school journal.
7. He has high self-esteem in spite of how he has been treated.
Thorin has been teased and mocked by other children. He has been treated not only in a shabby manner by a few staff members throughout his education so far but in a down right demeaning manner. He has been pitied, which he can discern uniformly by children and adults alike. He describes the looks he gets as “mean.”
In spite of how others perceive him, Thorin likes himself very much. He exudes confidence. How long can he be expected not to internalize the puny view some people have of his Down syndrome? The fear my husband and I have is that the world will extinguish that spark.
In reading over this I realized not only could I have not done these things our son takes for granted many of them I never had to even consider.
Follow Kari on Twitter @typicalson
From my other blog:
20 reasons to respect my child with special needs
Images courtesy of Kari Wagner-Peck