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I requested a very specific seat in shul - an aisle seat but in line with the window. I need to be able to keep an eye on Caila, who is 9 years old with Down syndrome, while she plays outside. Temira, my other daughter who is 13 and I take turns every 15 minutes to go check on Caila and so we need easy access in and out.
Every time I looked out the window my heart ached for Caila. She was standing or sitting alone looking so sad. Caila is unusually high functioning for her diagnosis and not blissfully unaware of her surroundings. She knows when she is included and when she is being left out, she tries so hard but it is sometimes hard for her to manage the dynamics in a big group, especially in an unstructured environment. She is fine one on one or in the structured tefillat yeladim (children’s group) at shul, but when all the kids are running around in a disorganized play routine it is hard for her to process and keep up. And more than anything Caila craves playing with the other kids.
Our telltale sign when she is anxious or stressed is that she picks at the skin on her lip. Yesterday, her lip was bleeding. By the time services were done I was a wreck and I was waiting for Gavin outside. As soon as I saw him I just burst into tears in front of everyone in uncontrollable sobs. Watching Caila struggle so much for the social inclusion that she craves was just too much for me.
It is also difficult for the little girls to understand and accommodate for Caila. They too are trying to fit in and survive the complicated group dynamics of young girls. When they are alone with Caila it's easier to accommodate for her. When one, particularly sensitive mom went out of her way to make sure Caila was included it really helped. She picked one girl to pair with Caila on an activity and Caila was beaming. It was the best part of the day.
I also have guilt and often wonder if it's fair to push her in inclusive environments – perhaps more special needs environments would be easier for her. But on the other hand I know that she had difficulty in special needs environments because she is so high functioning. In an afternoon program for kids with special needs she mothers the kids her age instead of really playing with them. She is ahead of her special needs peers academically so they put her with the teenage girls which is also socially not a solution. So how can we help Caila?
At school, we are very fortunate to have a wonderful assistant (sa’ayat) that helps mediate the social integration with the other children during recess and there are some amazing mothers of children in Caila’s class who have Caila over or bring their kids for playdates and sleepovers but sometimes with the busy schedules that everyone has, remembering Caila falls through the cracks. On Purim this year, Caila delivered her mishloach manot to her school friends’ homes and then waited at our apartment for her friends to bring her mishloach manot…………and only one came. She was so upset.
I know that Gavin and I were given Caila for a reason and I know that Hashem only gave her to us because we can cope with this challenge. Yesterday, I prayed with all my heart for the wisdom to know how to help Caila and the strength to keep making sure Caila achieves everything she can. It’s just some days are a little harder than others……….