By Julie Shaffer
My sweet little Lu, at the tender age of 3, went to her first day of preschool last week. It is just a little summer program that is once a week for four weeks, but it still counts as preschool to me. Because of Lucy’s special needs she will have a Personal Care Aide with her at all times in school and since A.) they haven’t found one for her yet and B.) even if they had found one, I would not have felt I knew that person enough to just leave Lucy with them, I will stay with her at least for the summer, but probably a little in the fall as well. Since I am a SAHM, Lucy has never been to a daycare or a babysitter, and only my parents ever take care of her for us. When she starts school in the fall it will be only for two afternoons a week and I will only leave when I feel confident in the person caring for her. She loves preschool so far. I on the other hand, am a nervous wreck.
<– First day of school!
I went to public school. I started in kindergarten and graduated from college many years later, so I am certainly not saying that it is the absolute worst thing on earth. I will say though that I never really loved it. I never felt like it was the best place for me. I might be a bit of a square peg that never quite fit in the round hole, no matter how diligently the public school system tried to whittle me down and squeeze me in. But the fact of the matter might be: Who is a perfect round peg? There are definitely people in the world that are excellent at sliding right into whatever round spot they are required to fit in and they don’t lament the loss of their original “shape”. But that is dull, and most people do not fit neatly into the roles and behaviors that are expected of them. And why should we have to try and all do things the same? Even in a school where individuality might be encouraged and rewarded, students are still expected to sit the same, walk the same, and mill from class to class directed by a ringing bell that alarmingly says, “Times up! Go now!” Kids are expected to raise their hands, read certain books to fulfill reading program requirements, eat lunch in 20 minutes, and all sit and stare at the same text books as their peers.
I realize that my thoughts are not revolutionary. This is why people homeschool. Before we even knew Lucy had Rett Syndrome, I had started contemplating homeschooling her for all of the reasons I mentioned above. Plus, I have been educated to be an educator, so I feel perfectly confident in my ability to pull this off. Even with her diagnosis of Rett Syndrome, I still feel confident. However, due to her diagnosis, I plan on sending her to school for some things. She can get most of her therapies there (occupational, physical, and speech), and I think she might like to go for the more social times like the “specials” classes such as library, music, art, and computer. But, I will be primarily in charge of her education. Although Lucy cannot walk, talk, or use her hands due to Rett Syndrome, she is cognitively at the level of every other three year old and I don’t have enough confidence in strangers to accept and understand that fact like they should.
So, that brings me back to starting preschool. She does love it. However, last week I nearly just picked her up and took her home several times as it was, for some reason, painfully clear suddenly, how she will never, ever fit into that round hole. And quite frankly, even if she didn’t have Rett Syndrome, I still wouldn’t want her to squeeze into it. But, it is mentally, physically, and emotionally exhausting to try to figure out how to help her succeed in a place that is not designed for her. Actually, in a WORLD that is not designed for her. The world expects people to have fine motor skills, but Lu has none. That is one of our biggest obstacles, especially in school. So, what I want to do is just bring her home where I tailor everything for her, and where we can take 45 minutes to eat a snack if we need to, and we always (or at least most of the time) know what to expect. The thing is though, like I said, Lucy loves it there. I have asked her every week if she likes it and she always nods “yes” with a giant smile.
At school, almost every activity we have done so far requires some kind of adaptation or just plain old hand-over-hand. When we do activities and projects at home, my first priority is to find things that she can do as independently as possible with hopefully little to no adaptations and very minimal, if any hand-over-hand assistance. We go to the library weekly and get a giant stack of books that she helps to pick out and one week she told me with her communication book that she wanted some books about cows. Later, as we were reading the books, we noticed that they were mostly about big commercial dairy and beef farms, not so much about cows enjoying their “cowness” and living peacefully in a pasture. So we made a project of creating a better cow habitat than what was being shown in the books. I’ve included a picture of it; Lucy did the finger painting, chose the cows, and helped glue them on. It was her project, with only a little help from me…because I understand the importance of her independence.
Just yesterday she had a nice play date with my friend Ann’s children who are five and three. It was a fun, relaxing day. There was socialization in scads, and Ann and I were there to help remind the kids of what we expect in terms of social skills and manners. I feel confident that they learned more and had more positive experiences in our few hours together than they might in a busy classroom with lots of kids and only a few adults to guide, nurture, and shape the interactions that will lead to what kind of humans our children will be in the future. I will send Lucy to a little bit of school because she enjoys it and because she has a very limited realm of things she can experience and enjoy on her own. However, every day will be an “audition” for the school, and the personnel to prove that they are accepting her, encouraging her, and believing in her, instead of just trying to squeeze her into a little round hole.
Reading with her friends.
My name is Julie Shaffer and I am a stay-at-home mom. It is the greatest job I have ever had. I write about Lucy because she is amazing, and I want the world to know about her. She defies Rett Syndrome every day with a smile on her face.
Please feel free to visit my regular blog at: www.understandinglu.blogspot.com
For more information on Rett Syndrome visit: www.rettsyndrome.org