SASsy Hallie

08/28/2025

And we’re off! Hallie started 3rd grade on Monday and I could not ask for a more blessed and God ordained situation. Every piece of this year so far is set up in the best possible way. Hallie is once again with the same autistic support teacher she had for both first and second grade. This was not something I was expecting as her teacher had traditionally worked with the k-2 students, but due to staffing changes and other situations, she is working with the older kids this year so Hallie (and her 2 buddies she’s been with since pre-k) are with her again. I literally gasped with glee when I got the email.

As if that wasn’t enough of a blessing, both Hallie and Norrah’s gen ed teachers this year have special Ed certification and have worked with special Ed students. This is great for obvious reasons for Hallie (her teacher is known to be one of the, if not the most inclusive of all the teachers in the school). It’s also great for Norrah though as her teacher already knows Hallie from the therapy dog program and understands Norrah’s situation for the bus and also is very inclusive in her classroom which is the type of environment I would want Norrah to be in as a gen ed student. She has 2 special Ed kids in her classroom which is something I hope for as I know Norrah can be a good example to her peers with treating everyone with dignity and respect because of her lived experience.

The only little hiccup we’ve run into is they are having to switch busses due to some changes in the bus routes. Hallie has had the same driver for 3 years so I am pretty bummed but he says their new driver is great and has been doing this a long time. Hopefully the transition goes smoothly.

I hope everyone else is off to a great start and has a great school year!

08/22/2025

Exciting to see SAS in the news!

✨ Big news on ! ✨

Thank you to ABC7NY and Pedro Rivera for helping us shine a spotlight on SATB2-Associated Syndrome this morning. 💜 Board Member Julie Hamburg and her daughter Lila bravely shared their story to raise awareness for SAS and the urgent need for research.

This is what today is all about—bringing visibility to our community, fueling hope, and pushing science forward. 🚀

You can be part of this momentum. Every donation today helps us drive breakthroughs in research and improve the lives of those living with SATB2-Associated Syndrome.

📺 https://abc7ny.com/videoClip/17614412/
🔗 www.satb2gene.org/donate

08/22/2025

Today is SATB2-Associated Syndrome Awareness Day 💜 — and your chance to make a real difference.

Every dollar fuels research that brings us closer to answers, treatments, and hope for families living with SAS. Progress is happening, but we can’t do it without YOU.

This is our moment. Let’s finish strong, together. 🙌

💜 Donate now. Share this post. Show your SAS.

👉 www.satb2gene.org/donate

08/21/2025

This is one of the biggest areas Hallie is affected. She is entirely nonverbal at 8 years old and her receptive language is significantly delayed. So not only does she struggle to express herself but she struggles to understand language as well. Receptive language is essential to expressive language so she will continue to struggle with communication until her receptive language abilities improve

💜 Did you know? is affected in all individuals with SATB2-Associated Syndrome?

🗣 SAS affects many areas of development, including speech. All individuals with have significantly delayed or affected speech. Over 70% are considered non-verbal communicators.

💬 The most common method of communication is gestures, either alone or in combination with sign language and/or an AAC device. AAC stands for Augmentative and Alternative Communication and refers to all forms of communication outside of oral speech. This can vary from gestures, communication boards, pictures, symbols, writing, or a high-tech device that generates speech.

💻 To download our detailed information sheet for Communication and Feeding, visit https://satb2gene.org/resources/satb2-information-sheet/

08/19/2025

This is by far the worst part about SAS for us. Hallie requires medication to ensure she stays asleep through the night but many nights during the month we still hear Hallie parties while the rest of the country sleeps

Raising a can be tiring. And a lack of sleep doesn't help. Research shows that approximately 40% - 45% of our SAS loved ones have difficulty falling asleep or staying asleep. If you're going through this, or have gone through this, you're not alone! Share your best advice and lessons you've learned along the way so others can benefit.

08/17/2025

08/16/2025

💜 💚

🥰 Having a child with a rare syndrome who is 1 out of just 800 in the world can – at times - feel isolating, so it’s always reassuring when you realize another just lives an hour away!

👭It didn’t matter that they hadn’t met until now; there was an unspoken understanding between them. They used the same signs, they both loved looking at photos, and best of all, their moms and families had the chance to bond and chat about their shared experiences.

🙏“Thank you for opening up your home to us Heather, Kelly – Chandler’s mom - said. Your kids are all so amazing and you are too.”

💞Here’s to new friends, new connections, and finding new people who just “get it.”

08/15/2025

How does Hallie fill your heart?

Hallie’s snuggles fill my heart! For the longest time she was not physically affectionate at all, then about a year ago she started giving more hugs and kisses and snuggles and it fills my heart so much!

💗 Our SAS kids have a lot of heart and we want to share it with the world! 🌎

Here’s how you can help:
💜 Draw a heart on a piece of paper and cut it out
✍ Write one word on it that describes how your fills your heart
💻 Post your photos, tag us, and use hashtag

💜 Let’s fill the feed with love and hear this August. 💚

05/03/2025

The reality of going to the park with Hallie. She typically finds a spot she likes, usually a tunnel, and she will just sit there happy as can be for as long as we will let her. Im always happy to let her do this, but we always have to be aware of other kids who might want to also use the tunnel. I always tense up when other kids go near because they aren’t going to know her uniqueness at first glance. They just see a kid taking up the tunnel. Thankfully they’re usually kind and either try to ask if they can go through or move on to something else. I’m always ready to move her if need be. The reality that a conflict can arise at any moment is real though. Will they be unkind and push her? Will she get mad and have a meltdown when I try to move her? Thankfully that’s not the case most of the time but the fear it could is always there. We will always show her that she needs to share public spaces but this often means disturbing her peace.