Introductory Guide to SATB2

When a child is first diagnosed with SATB2 Associated Syndrome, there are a lot of questions that come up, especially if that child is very young. Parents of older kids that are diagnosed still have questions, but have figured out what to do for therapy and IEPs and insurance and everything over the years. 

Also, I'm skipping over all the "Breathe, you are doing fine!" stuff, because I'm not good at that, and one thing I have learned as a special needs parent is to play to my strengths. Which is making lists.

So, your child was just diagnosed with SATB2. Now what?

1. Get your child on a waiting list for social services. Medicaid waivers, etc. You can contact a social worker to help with this. In Texas where I live, it is a 10-13 year wait list to receive ANY services. So get on the lists NOW.

2. I am sure you are already doing therapy, but read up on the apraxia! Many SATB2 kids were diagnosed with Apraxia before receiving the genetic diagnosis. The K-SLP approach to treating apraxia is very popular, and has helped several SATB2 kids. The PROMPT method of speech therapy, a great starting point, and the Padovan method. I haven't tried that last one, but many moms have and say it is fantastic. Not common in the US, but is more so in Europe, from what I have heard.

3. Apply for grants/ find funding for therapy. We have spent tens of thousands of dollars on Chelsea's therapy over the years. Call insurance and max out those benefits! We pay outrageous premiums, so you bet I will be making them pay huge bills every year! 

4. Figure out IEPs. If your child is 0-3 (at least in the US), they should be getting in-home services. Once they turn 3, they will be going to a district special education preschool with an IEP "Individualized Education Program". The best books for that are the Wrightslaw books "All About IEPs" (beginner level), "Emotions to Advocacy" (intermediate), and then they have special ed law books that are awesome once you know what is going on. 

5. Get a team of specialists! Neurologist (Chelsea had non-convulsive seizures I didn't know about until she was 4), geneticist, speech therapist, occupational therapist, neuropsychologist, etc. Dr. Z, the geneticist researching this syndrome, has a great website that has a list of the tests you should have done, therapy recommendations, etc. He has published several articles and hosted our first ever SATB2 conference this year. 

6. Explore different ways of communication. Not all SATB2 kids talk. In fact, very few do. So, do you want to pursue speech therapy? Use sign language? A picture exchange system (PECS)? An iPad with a language program? There are SATB2 kids that use one or several of these. My Chelsea started out with PECS, and now uses a combination of sign language and speech approximations to communicate. Find out what works best for YOUR child.  

7. Don't give up!!! When I first met with the "professionals", they told me to never expect Chelsea to be potty trained, or to speak, or read. I told them challenge accepted (and thought some much less friendly things) and dove in. Chelsea is 6 and a half now, and learning to read, can communicate needs and most wants, and has been potty trained for a year. 

Further Reading: Speech Therapy

What Kind of Speech Therapy Should We Do?
CASANA's Website

K-SLP Method

Meeting Nancy Kaufman: The Lady Who Developed K-SLP

Nancy Kaufman's Website

PROMPT Website

ASL: Start Signing!

Our Journey with ASL and PECS

Further Reading: At Home

Home Speech Practice Ideas

Home OT Practice Ideas

Home PT Practice Ideas

Potty Training a SATB2 Child

Funding Sources for Therapy

Organizing Your Child's Files

Further Reading: School

Starting the School Year Part 1

Starting the School Year Part 2

The BEST Website for Special Ed Questions: Wrightslaw

IEP Acronym Cheat Sheet

Further Reading: Specialists

"Silent Seizures"

Dr. Z's website: This is the OFFICIAL SATB2 site!

Dr. Z study in "Real People" English

Common SATB2 Features

SATB2 Frequently Asked Questions

SATB2 Clinic at 2017 Conference

Teaching Your SATB2 Child to Read:

Preparing to Read

Teaching Reading

Easy Reading Games

Easy Reading Games Part 2

Real Science vs. Junk Science

With parenting in general, but special needs parenting especially, you get a LOT of unsolicited advice. 

One of my biggest pet peeves is when people site junk science as a credible source. 

Let's Compare!! 

Real science is very, very boring to read. It uses a lot of jargon and is confusing to understand. Junk science is chock full of catching phrases like "Leaked video reveals ____" or "Shocking Secrets of _____". It is very easy to read and understand. Most people are much more likely to read junk science. It is all over the internet.  

Real Science will be articles with titles like "Satb2 haploinsufficiency phenocopies 2q32-q33 deletions, whereas loss suggests a fundamental role in the coordination of jaw development" Junk Science would be an article that says "Child Born With No Mouth, SATB2 Gene Guilty!" 

Google and Wikipedia, though surely great founts of knowledge, DO NOT count as credible sources. A real scientific article will have a huge long list citing the sources that sound just as boring as the title of the article you just read. Junk science will list few, if any, actual sources.

Remember: .com sites are not as believable as .edu or .gov or .org.

How many authors does your article have? If there is one person that wrote it, more likely to be junk science (not always, but often!). If there is a long list of authors, more likely to be real science. 

Real science! Amazing!!!

Real science will not have exciting or jaw-dropping pictures. Maybe some black and white photos comparing the thumbs of the test subjects, or a chart of results of bone density scans. Junk science will have flashy, colored pictures of horrific medical anomalies, or a heart-breaking, stock photo of a mother crying. BIG difference.

In real science, there aren't many ads at all. Maybe one computer-related ad on the side of the screen. If you are getting pop-ups, or have to click 21 times to read the whole article, or see links to other junk science articles like "12 Ways Corn is Killing you" probably junk science! If you fall asleep twice reading the tiny text in the 42 pages, much more likely to be real science! 

So, when you tell me about a "cure" for my child you found on the internet after 10 minutes of punching catchy phrases into google, I'm not likely to take you seriously. I will be as polite as I can be, but when I see this "article" with links to "Leaked Photos of Boy Living in Cave for 3 Years"... Yeah, much less likely to change my beliefs. 

Teaching Reading to SATB2 Kids

I am a HUGE believer in teaching every child to read. With a basic reading and writing level, the ability to care for oneself skyrockets! 

You are then able to make a grocery list, follow a recipe, follow a basic map, complete a to-do list (think job skills!), have enjoyment from a mentally stimulating activity... I could go on for forever!

When we consulted with the first genetic counselor, they told me that with a child whose IQ is 41, she would never be able to read. That maybe she could learn letters if I worked diligently, but to never get my hopes up. 

Being the competitive person I am, I told them that I accepted the challenge! I know Chelsea is not incapable of learning. She just needs different methods and a little more repetition! 

I checked out books on teaching children with learning disabilities to read, and this one was by far my favorite (see below). It was dated, and geared for children with Down Syndrome, but had all the information I needed, and it WORKED!!! Titled "Teaching Reading to Children with Down Syndrome; A Guide for Parents and Teachers"

In the book, it says to focus on memorizing sight words that have meaning for your child. The basic words that they teach as sight words in kindergarten have no meaning whatsoever to Chelsea! As, if, but, or- why would she bother learning those words?

Backing up quickly- when I decided to take it upon myself to teach Chelsea to read, she was 5  and a half years old, knew her letters, and the school had written home to say she was unable to learn any words. 

So after reading that book, I wrote out a bunch of Disney princess names, and when Chelsea came home, I showed her that each princess had her own name card. Within 2-3 repetitions, Chelsea was able to identify ALL the names independently!!! 

Within a week of using this method, Chelsea was able to jump to 20 words that she knew on sight, including family names! Even kids with low IQ scores CAN learn to read!!!