After nearly 12 years, I was finally shown how Josie could communicate with us - by a boy who also has FOXG1 syndrome.
I’m about to tell you a mindblowing story that will go down as one of my most eye-opening moments as Josie’s mom.
Last weekend, we met Abey, a 20-year-old young man with FOXG1 syndrome. He is so similar to Josie. When you see them together you can tell they have the same syndrome. They are both in wheelchairs, they are both non-verbal, they have involuntary movements, feeding tubes, and they need assistance.
But get this:
Abey is a student at Columbia University and he is able to read and write. He can communicate whatever is on his mind!
You read that right. Columbia University - as in the ivy league school.
In fact, Abey told me something very important that I am doing wrong with Josie. And boy, was he right! I’m still taking this all in.
How I found Abey:
In May, I came across an article about a FOXG1 boy who writes poems and long articles.
Not just long articles, but beautifully, brilliantly written articles explaining things like: what it’s really like to be non-verbal, and how he accepts his disabilities. We are told our children with FOXG1 not only have severe physical disabilities, but also cognitive disabilities.
I didn’t understand how these articles could be written by someone with FOXG1 syndrome.
I figured he must have a very - very - mild mutation and a lot of help. I was wrong.
I read that his parents developed a communications device that allows him to share his gift for writing. The system is called Tell Us Abey.
I clicked ‘Contact Us’ on their website and asked to learn more.
Soon enough I was emailing Abey’s mom (an engineer), and dad (a Broadway stagehand), and Abey himself who told me he would love to meet more FOXG kids.
Fast forward to the FOXG1 get-together I hosted at my house this past weekend. I invited two more FOXG1 families that we had been trying to see.
Abey’s family brought the ‘Tell Us Abey’ system over and showed us how he uses it.
I was floored.
Michelle offered to hold Josie up so she could try it, but as we expected, Josie can't bear weight well enough to use it.
Michelle says for any FOXG1 child like Abey to master bearing weight they must:
- stand in a stander for hours every day
- do sit ups and bridge pose exercises every day
We will step this up.
Michelle and Josh explained that, as we saw, Abey’s “point of access” is his full body. He is able to bear weight so he stands up with assistance and leans forward to hit the buttons that correlate with the letters.
But, Josie could have a different point of access. Michelle said, "let's find out." She then showed us something that has already changed our lives.
She sat on the couch with Josie in front of her and asked her to lean either right or left to answer questions. This worked. Leaning is Josie’s point of access. Michelle also said that Josie has better control of her arms to purposefully hit buttons. This makes sense as this is what we’ve been working on for years.
When we asked Josie some questions, we learned:
She can read.
She leans with purpose for every question
The wheels on the bus is NOT one of her favorite songs anymore!
Abey joined the conversation and told me, perhaps the most important thing I needed to learn at this point in Josie’s life.
I’ve been told!
This was a profound awakening.
We’ve been treating Josie like a baby, well, since she was a baby! She will be 12 in three months. We still put Peppa Pig and Dora the Explorer on the TV and wonder why she isn’t laughing the way she used to. I worried she was becoming less connected.
Oh man, we put Cocomelon nursery rhymes on all day! <<Insert embarrassed -face emoji.>> I have to be real, she does still laugh at the muffin man. Who doesn't?
We still speak to her like a baby and call her “our little Boosbie Boo.” Well, my mom still calls me her “baby Colie,” so maybe some things will remain. While this revelation continues to unravel, I am just so damn grateful to start making age-appropriate changes.
It took a young man with FOXG1 syndrome to tell me my daughter doesn't want to be treated like a baby anymore.
We have been using the leaning method for a few days now and she is communicating with us more than ever. I was able to identify exactly what is hurting her, which led us to confirm she needed an antibiotic for an infection.
Our world has just opened up and I am so excited for this next chapter to expand on Josie’s ability to communicate.
Before this past weekend, every time someone would ask me, “Do you think Josie understands you?” I would say, “yes, I just think so.” But I could never explain how I knew this.
Now, I can. Thanks to Abey and his remarkable parents.
We want to introduce our FOXG1 community to Abey.
The FOXG1 Research Foundation Parent Support Team will host a Zoom with Abey and his parents to talk more about their journey, demo ‘Tell Us Abey,’ and answer questions.
If you’re interested in joining, please sign up for the Zoom here. We’ll share the date and time with you as soon as we have those details.
Read more about how Tell us Abey works here.
Some photos from the FOXG1 get-together with Benjamin and Julian too!
