Over the last several weeks, my research into all things related to Evie starting school and growing up have been in the forefront of my mind. The initial dive into the Google world was overwhelming and was very remeniscent of Googling Down Syndrome when she was born. It was incredibly anxiety provoking. The very limited experience I have being involved in the IEP process as a therapist didn't help. You read and hear the horror stories about IEPs that significantly underserve a child, being uninformed or feeling unsupported as parents, being told the school district can't or doesn't have to provide certain services or adaptations when maybe they do by law, etc. I've had my share of "freak out" moments when I cry, worry myself into a headache, and feel like I am going to massively fail Evie regarding her education. Luckily for me, I have a couple of wonderful friends that I can "freak out" to, one in particular who quickly reminded me that I "moved to Hawai'i" to help Evie, so there is no way I will fail her. That did it. Okay... freak out over.
Education is something that I have highly valued my whole life. I was one of those kids that had to study minimally throughout high school and throughout undergrad. That changed in my Masters program and wildly changed during my Ph.D. program and subsequent testing for licensure, but I learned how because it mattered to me. I wanted to be the first person in the family with a Ph.D.. I wanted that first piece of mail that came to the house addressed to Dr. and Mr. Strong. That may sound silly, but it was a motivating factor for a LONG time. Rob was fully supportive of this, and we enjoyed the moment when we received that first piece of mail. If I remember correctly, it was a wedding invitation from another therapist I met along my career journey.
When it comes to my kids, I value their educational experience even more. I want them to reach their goals. I want them to receive a quality education so that they can follow their dreams. We were fortunate enough to get Ben into a charter school this year. This school focuses on project based, experiential and hands-on learning, does not see the "value" in homework (neither do the research studies), and still allows for time outside recess time throughout middle school. He is adjusting well and enjoying the way he is learning.
Evie is only 2, so she is not quite ready for school. Her education will look different than mine or Rob's, and it will likely look different than Ben's. That does not mean she doesn't get the experience that's right for her.
I saw something on social media this morning that was about how we are often uncomfortable with someone who figuratively "colors outide the lines" or learns, speaks, or engages differently than we do. Well at 11, Ben still literally colors outside the lines. It took me a while to not comment on that, but now I just see that as what it is for him. Ben is meticulous when it comes to drawing. The details are important to him. The coloring on the other hand, is like an afterthought. Something he does to finish, but not the important part. So he does it quickly and moves on to the next drawing. I actually really like that about his art. Evie will color outside the lines and further push me and everyone around her to color outside the lines. I'm at a place where I welcome that. I actually really look forward to seeing how she learns as she grows, and all she is going to teach me. I've learned so much from both of my kids already.
This morning, I was involved in a webinar put on by the National Down Syndrome Society (NDSS). It was entitled, "Down Syndrome: The Specific Learning Profile." It began with a lovely young lady with DS named Charlotte who shared her educational experience. If I remember correctly, she attended George Mason University and achieved a degree in sociology. She shared several of the different things she did during her years in school that helped her learn. Simple things like sitting in the front of the class to minimize distractions, more time on tests and using a calculator for math (as this was her most difficult subject), and becoming very familiar with the syllabi in college and being prepared for each class to name a few. The seminar continued with information on how people with DS are often more visual and kinesthetic learners, and some specific ways to help. For example, using touch screens that are larger instead of regular laptops if operating the cursor is difficult, or making the cursor bigger. Using 18 point font, using lined paper with darker lines, the list goes on. It never would have occurred to me to include sitting in the front of the classroom would be something to add to an IEP. Ironically, I know that if I don't sit in the front, I will get distracted. So I can definitely relate to and see the benefits.
The point of all of this is to say: after seeing this webinar, I feel much less overwhelmed and very encouraged that I can actually help her in meaningful ways, regardless of her educational setting. We are even considering homeschooling (hopefully in a co-op format) so she can continue to be with peers as much as possible. We have much to learn, but no matter what happens I know that we'll do the best we can for Evie. She will get the education she deserves and that picture will be colored in whatever ways works for her!
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