We have two daughters with SATB2 Associated Syndrome. Our youngest recently turned 2. Here is some of what we have learned works and what doesn't works by lots of trial and error on our part.
1. FISH OIL!!!!
Okay, there aren't many things that I can give a quick and easy answer on, but this is one of them! I first gave fish oil a try when my oldest was 3 years old. I had been to a national Apraxia conference where it was highly recommended, so started, and shortly after was when Chelsea started developing speech.
SO, when our second daughter was born, we started giving fish oil at 4 months old with her first baby food. I know other factors came into play, but Lily has done VERY well in comparison to Chelsea. She rolled, sat, and crawled on time, and walked at the later end of the "normal" range, AND had her first word at 15 months. I personally think fish oil helped.
2. GET EARLY INTERVENTION!!!
I really wish I had gotten intervention earlier with Chelsea. I didn't get anything until she was about a year old, and then just took minimal services until she was about 2. She was my first and I didn't want to think that anything was wrong. I was so sure that with just a little physical and speech therapy, she would catch up.
When Lily was diagnosed at about 6 weeks old, I called our state early intervention within a week (after I had cried an ocean worth of tears) and demanded that she get seen. Even though she didn't qualify based on her ability level (hard to evaluate a newborn as being delayed!), I pushed the medical diagnosis and brought in forms saying that 100% of SATB2 kids have delays, etc.
I think maybe they gave me services at first because I was such a psycho. But I didn't care at all! I don't want to look at my girls in 5 years and apologize for not getting them the care they needed because I was afraid to make a few waves.
3. DO THERAPY AT HOME!!!
It isn't enough to have therapists come every week to work with your child. YOU have to get on the floor and do the therapy with your child. Pull up a list of developmental milestones on Pinterest, or pull out that dusty copy of "What To Expect The First Year" and list out goals to work on. Or get ideas from a therapist.
I try to set aside a minimum of 6 (10-15 minute) increments each day at first. We would work a little on physical therapy, occupational therapy, reading aloud, sign language, and 2 speech "sessions". (Pro tip: Make a physical to-do list every day!)
And when we had Lily as a baby, I tossed ALL of her swings, jumpers, baby carriers, everything. She was being held or was having tummy time, or was sleeping. Hooray for trunk control!
4. Get a Private SLP EARLY!!!
All state-run early intervention programs I have interacted with won't recommend speech therapy evaluations until 2 years old. They say you can't know until then if your child is delayed. Here is my advice: ignore that and RUN to get a good SLP TODAY!!
To compare:
Chelsea: We started Chelsea with state EI speech at 2 years old a couple times a month, then in private speech weekly at 3 years old. She got her first word at 3 years old.
Lily: State EI had to be threatened (not really, but close) to give services to Lily when I requested them for Lily at a year old, but the speech therapist that came was dreadful. I got Chelsea going with weekly private therapy visits at a year old, and she got her first word at 15 months.
So there you have it! 4 ways to give your SATB2 child a head start in the first 2 years of life!
