Movin' on up!
Josie graduated from elementary school today. It might have been the cutest graduation ceremony in the history of graduation ceremonies.
As I sat under the tent amongst other proud parents of children with disabilities, I had a flashback to when we first arrived here for Kindergarten in 2016.
I was so used to Josie being home every day. It felt safe to me. I was so afraid to hand Josie over to spend her day away from me in this new school with new people.
I spent the first week (fine, maybe two weeks) following the school bus (a 40 minute ride) and sitting in a room in the school where parents with separation anxiety could spend the day until we were ready to let go. Yup, I was that mom.
I just went back and read the blog post I wrote while I was sitting in that overprotective parents room in 2016. There's something I wrote in that post that warrants repeating seven years later:
One of the most beautiful things about being a special needs mom is meeting so many people who choose to work with disabled children. I think some people are born with a gene to care for those who need more care. They're so patient, truly excited, concerned, soft, strong, thoughtful, comforting, and loving. I am so grateful for this breed of people who choose to follow their caring passion. They are instrumental in our children's progress.
This school, the Hagedorn Little Village School, is filled with these incredible people who make a tremendous difference. If you can feel energy around you, this place is humid with love. I feel really good about this. I'm confident our little Beanie girl is in great hands.
Boy was I right. Our beanie girl, boobsie boo, Jojo, now known as Joyfully Josie, was in the greatest hands.
Josie thrives at school.
We just had her CSE meeting, which is when her teacher and all her therapists come together with the school district to discuss her progress and goals for next year. This past meeting was unlike any meeting before. They all reported that Josie has shown the most progress in the past few months than in her entire time at school! It's true. She's more focused. She's more purposeful. She's saying some words! No joke! She will say "yeah" and "no" and I swear she said "mom" the other day. Tanner heard it too!
What can we attribute this progress to? Well, thank goodness the pandemic is behind us and we finally found nurse care so that she was able to attend school in person again! She is proof how important in-person education is. But, we all know that.
She started a new anti-seizure medication two months ago that could be helping her cognitively. The medication is called Fintepla, and our foundation, the FOXG1 Research Foundation is launching the first-ever clinical trial for FOXg1 syndrome for this med. I learned that this drug has been showing great results in the clinical trials for some other rare diseases so I've been working w/ NYU to launch this trial so that if it is effective for FOXg1 kids, our community can have access to it. This deserves a separate blog post.
What else could we attribute her progress to? Well, she has a fantastic team. I go back to what I said in 2016 and I thank the people who choose to dedicate their lives to helping those that need a different type of education. Those people born with that caring, patient, kindness gene. Yup, I think it's genetic!
So Josie girl will be going to a new school in September and guess what, it's also an amazing place. When we went for her screening, I had the same exact feeling.
I felt the humidity of love in the hallways and I know she will only continue to progress here. I also know she will continue to spread so much joy.
To everyone in the special education space, thank you, thank you, thank you.
We are so grateful.
xo,
Nicole
My musical inspiration for the title of this post is straight from The Jefferson's TV sitcom from the '70s -early '80s. I'm showing my age! Here's a fun fact for you. Did you know the woman who sang "Movin On Up" played Willona, the gossipy neighbor in Good Times? Her name was Jeannette Theresa DuBois, also known as Ja’Net DuBois and she co-wrote and sang the theme song backed by a gospel choir.
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