Every school year, parents have back to school rituals. For some it’s those first day photos. For others it’s celebratory ice cream. When you have a child with a disability, it’s usually many things that can be very involved; and it almost always includes a letter to the new teachers.
Jill Rose is the Center for Family Involvement’s Videographer/Social Media specialist and Liaison to the Down Syndrome Community.
She and her husband Tim wanted to share what they wrote to their daugther Sophia’s school team this year. Here is their letter:
Just wanted to say how excited we are that you are Sophia’s teacher. Tim and I are very easy going so please feel free to share any concerns or thoughts throughout the year.
A couple things about Sophia:
It can be difficult to get her to transition and she can be very stubborn (common qualities for kids with Down syndrome). One tactic that works well is using “first/then” language to motivate her. I literally use it 50 times a day, as it seems to be the best and only motivator. So as an example, first you get dressed, then we get to go for a walk. First eat, then iPad. I have to get creative but it pretty much solved our transition problems at home.
She does get “time outs” at home so if you have to give her a time out, but use different language for it, maybe just let her know at first that it’s time out but is also called (whatever you call it).
She needs to be on a bathroom schedule. The most frustrating thing for us is Sophia’s lack of interest in going potty on her own. Therefore we still have to have her wear pull-ups.
I learned from a parent that it’s a great idea to come speak to the class about Down syndrome. I’ve done it every year she’s been in school and it’s extremely helpful for the kids to understand Down syndrome and all of the gifts and challenges that come with it. I usually wait two weeks after school starts so it gives her classmates time to meet her and by then they have questions about her. When we come in we usually explain what Down syndrome is, what gifts and challenges it presents, answer their questions (one girl once asked in a very concerned voice “does it hurt?” I was happy to clarify it does not ). Then I ask her classmates to help you as far as explaining transitions to her if she seems lost. Sometimes everyone will get up to go do something and she will be confused and remain seated. So rather than you or a teacher’s assistant asking her to get up, it’s helpful if her classmates are called to task as she listens to them better. This has worked out well. Please let me know if you have any concerns about it.
Sophia gives a lot of hugs and I’ve noticed kids will seek her out for hugs. One time I was in the class and this happened and the girl looked at me and said, “sometimes I just need a hug.” As she ages this seems less appropriate but maybe we talk about this later. For the time being, it still seems sweet.
It might take some time to understand her, for example when she says water it sounds like “dogger.” If you ever need to know what she’s saying, please feel free to text me.
Finally, Sophia is on a gluten free diet. So if you have any activities where kids are getting things like cookies or pretzels, just let me know and I can send her to school with a gluten free version.