Many of the most common questions for newly diagnosed SATB2 families center around speech- the prognosis, the recommended treatment plan, and what to ask for in IEPs.
In a nutshell:
Prognosis
98-100% of children with SATB2 Associated Syndrome also have Childhood Apraxia of Speech. This will range in severity, but is usually severe to profound. All this means is that your child needs a LOT more repetitions of a sound/ word for them to learn it.
With appropriate, intense, and frequent speech therapy with a qualified professional, progress can be made. There are children with SATB2 who primarily speak and are understood. There are also children who vocalize but are not well understood by strangers, so supplement with AAC devices and/ or sign language.
Recommended Treatment Plan
The recommended treatment for speech is:
- A minimum of 90 to 120 minutes each week of primary 1:1 speech therapy
- Speech therapist should be highly trained in area of Childhood Apraxia of Speech
- Supplementing with AAC device/ sign language/ PECS system
The full recommendation letter for speech can be found HERE
The full list of recommendations for all areas (genetic, dental, neurologic, musculoskeletal, etc) affected by SAS can be found HERE
And of course, there are more resources to be found at satb2gene.org
Getting More on Your IEP
Now, we get to talk about my favorite topic- IEPs!!!
To briefly recap for new families- an IEP (in the United States of America) means the Individualized Education Program that the school team helps to design to fit your child's specific needs.
This is usually a rather lengthy document that outlines:
1) Your child's current ability levels across all areas (PLAAFP)
2) Goals in different subjects/ areas (this could mean science, gross motor, reading, speech, or toilet training or whatever is most important for YOUR child to learn)
3) Accommodations/ Modifications
4) Lists of services and the number of minutes
I won't go into goals/ accommodations/ modifications/ PLAAFP right now. We will save those fun topics for another day. Today, we will scratch the surface on related services and the number of minutes!
Here is what is SUPPOSED to happen:
a. The parent expressed concern about their child's development, often provides letters of recommendation from professionals familiar with the child
b. The school team assesses/ evaluates the child and pays special attention to the parent's concerns, and studies outside information
c. The parents and school employees develop a plan to get their child the appropriate number of minutes of services that the child needs based on their disability
d. The IEP is implemented correctly
Here is what USUALLY happens:
a. School gets referral for a child, does standard evaluation
b. IEP is developed before parents meets with school. This is typically a "one size fits all" IEP, like:
- Half day preschool 3-5 days a week
- 30 minutes group speech therapy/ week
- 15 minutes fine motor development/ OT each week
- 20 minutes APE (Adapted Physical Education) class each week
c. Parent is unaware they can (and should!) ask for more, assumes the school knows best, and signs the IEP. Also they feel a little intimidated by the army of professionals sitting across from them
d. IEP is implemented (sometimes correctly, sometimes not)
SO... What should we do???
In regards to speech for my daughter, I ask for:
- 2 hours 1:1 speech/ week
- Regular training for myself and the SLPs (3 apraxia specific webinars/ year is my go-to)
- AAC training for all staff that work with my child (bus driver, aides, teachers, everyone)
- 1 30 minute group speech session/ week to practice functionally using language among peers
Many parents get to this point and think "Yes! I want my kid not get more, but how do I get the school to agree?"
Here are 3 ideas to try:
1) Bring letters from professionals! Bring in letters, like the ones from the links above, that back up what you are asking for. Bring in mounds of research (highlight the parts you want them to focus on!) and submit it as peer-edited research. Apraxia-Kids has a great website with a lot of research, and of course satb2gene.org.
By federal law, the IEP team HAS to consider any professional data you bring to the table. You can also write up a parent addendum and have them attach it to your child's IEP. In my parent addendums, I will write out what specifically I am asking for and what the school's response is. As a parent addendum, it is automatically a part of your child's record, and can be seen as evidence that you are trying to get what is scientifically proven to help your child progress.
That way, if you submit a complaint to your board of education, they have hard evidence that you had professionals recommend a certain treatment/ level of treatment that the IEP team ignored.
2) Be flexible with the SLP. Many SLPs worry about your child missing instructional time, and so don't want to pull them for speech. This is an understandable concern- we don't want them to miss out either! So think outside the box. Could the SLP go with your child to science? Could they have their speech session outside during recess one day and work on asking other kids to play? Could you meet before or after school to get those minutes in?
3) Remember the case law Endrew F vs. Douglas County! This was a 2017 case that determined that children with disabilities should be making "meaningful, not minimal" progress. So if your child is receiving 30 minutes of group speech therapy each week and not making progress (or not making significant progress!), then it clearly is not working and needs to be changed. The definition of insanity (according to Einstein) is doing the same thing over and over yet expecting different results.
This case law is a HUGE win for students with disabilities! No longer are we supposed to accept tiny bits of progress, but we can expect more of the schools!
You can read all about Endrew F v. Douglas in my favorite article about it HERE. Also, if you haven't spent an insane number of hours reading the blogs on wrightslaw.com, run over and take a look! They blog about every topic known to special education families!
