Saturday, June 23, 2018

SATB2 Quirks

Most people learn pretty quick about the big parts of the SATB2 diagnosis. The cleft or high palate, absent or limited speech, intellectual impairment, behavior and bone disorders, dental issues, all that. (That is a lot of big topics, by the way!)

Here are a few things that are very common for SATB2 kids that aren't as big of news, but still cool that they have in common:

Fast Growing/ Curly Toenails
Oh my goodness, can toenails grow any faster? And they usually curl down, so are hard to trim, especially that crazy 4th toe! Weird! Chelsea doesn't like getting her nails trimmed ever, so I usually bribe her with nail polish every time I trim a nail.

Huge Appetites

These kids can EAT! Chelsea eats just about anything I put in front of her! Not picky at all! I remember one time Chelsea ate 3 POUNDS of grapes in a single sitting. It is like having a teenage boy who is starving and also works out all day living in my house. 

Super Skinny
You would think with those huge appetites, these kids would be huge! But no, they are SO skinny! (with a few exceptions of some G tube cuties) I can count all Chelsea's ribs, and her pants are constantly slipping down- that girl has no bum to hold them up!


Lots and lots of drool! Sometimes it stops around 3-4 years old, and sometimes it continues all the way into adulthood. Crazy!


As babies, these kids would stick out their tongues all the time, trying to lick everything and are EXCELLENT at rejecting solid foods when first introduced!

Infectious Smiles

A word of caution- these kids have some of the cutest, brightest, most adorable smiles ever!!! We parents get compliments all the time on those radiant grins, which often have teeth missing!

Sleep? What is sleep?

Lots of these kids don't sleep well alone. Or at all, really. You think normal parents don't get sleep? Imagine a 14 year old climbing into bed with you every night! 


These kids are super sweet and friendly most of the time. It usually scares typical people to be approached and hugged. Okay, it scares them with it is an older child or adult. When it is a toddler, it is adorable. But there is usually lots of waving and blowing kisses and hugging. With total strangers.

Lazy Eye

A bunch of these SATB2 kids will have an eye that randomly drifts off and looks a different direction. Many people normally do, but the difference is that it is harder to fix with a SATB2 kid, since they can't tell an eye doctor exactly what is wrong. 


Lots and lots of these kids will growl when excited, or upset, or just as a sensory input. Chelsea used to growl at everyone when she was a baby, and still does sometimes! We try to tell her that princesses don't growl, they talk or sing. But it doesn't always work.
Chuckling Laugh
Every time SATB2 kids meet up, one of the most common things said is, "They laugh EXACTLY the same!!!"

High Pain Tolerance

When Chelsea was 2, she fell off a swing and broke her collarbone, and didn't even cry! I didn't know she had a broken bone until she stopped using her arm the next day and I took her to the doctor. Come to find out- pain is a good thing to have! It lets you know what your body needs!

They Eat Anything

Literally anything. I was forever picking weird things out of Chelsea's mouth- pebbles, orange and banana peels, fuzz from sweaters, lots of things!

Monday, June 18, 2018

Traveling with a SATB2 Child

With the 2nd annual SATB2 Associated Syndrome Conference coming up, our family is gearing up for a long road trip to drive there and back again. 

With a SATB2 kid along for the ride, this can be a massive undertaking! So here are some ways we keep our sanity while on the open road together:

Things to Bring:

Bring a clean up kit!!! Our SATB2 kids car sick. A LOT. So be prepared! For my clean up kit, I include: clothes, carpet cleaner, Lysol wipes, air freshener, plastic bags, water, quarters, laundry detergent, and hair ties/ brush

BOOKS!! Audio books and regular books. Books for the kids to quietly look at by themselves, follow along with audio books, or for me to read aloud from the front seat

Rest stop toys and snacks! I don't let my kids eat in the car, so rest stops every hour or two include a potty break, snack time, and 10 minutes or so of throwing a ball/ frisbee

Prizes for good behavior! Every half hour of no fighting/ whining, my kids earn a "car buck" for good behavior. They can save up their car bucks for prizes, worth different amounts. Chelsea just likes getting a prize and forgets about the ticket system. My son LOVES earning the tickets

Coloring books and coloring pencils! I don't like using markers because some always ends up on my seats

DIY Activities

My favorite thing to make is BUSY BAGS!!! I blogged about the first 22 busy bags HERE. And trust me- I am NOT crafty! If I can do it, YOU can do it!

I also put together a few Busy Boxes, like a dinosaur play scene, a lego box, things like that. I wrote about it HERE.

This trip, I really want to make these magnetic travel boards I found of pinterest! 
Another big hit with my kids is when we sing songs. I am terrible at thinking of what songs to sing, even though we know soooo many, so I made little pages in sheet protectors and let the kids choose which song they want


  • I spy!!! The regular version, or print out pages, or get I Spy books from the library

  • Alphabet game (find letters A-Z)
  • Car BINGO (I found 4 of these at the dollar store)

  • Categories (pick a category and go around the car, everyone saying something from that category)
  • Name that singer (Chelsea's favorite because we sing a lot of Disney songs!) 

Travel Products

If you don't want to go to the trouble of making a bunch of activities, here are some things we have used to entertain the kids with great success! 

  • Water WOW- these are usually about $5/ each, and TOTALLY worth it!!! You fill up the pen with water, and then the kids draw on each picture, which colors it. After a few minutes, it dries back to white so you can color again

  • Re-useable stickers- people. Again, about $5/ each. My kids love these!!! And I like it because it keeps them occupied for FOREVER! The only down side is that some of the stickers are tiny (like the shoes), and get lost or drop all over the car. So when I find stickers in the carpet, they go in the trash. That is enough motivation for my son to keep it cleaned up.

  • Re-useable stickers- scenes. Yet again, about $5/ each. I want to use these for the magnetic boards! Put on magnets to hold the scene there and then play with it. I also love these in the car because the stickers stick to the windows, and HOW FUN IS THAT??

  • Magnetic dress-up. These range from $5-$8 each, and I have used mine for years, so I think it is well worth it! This is one of Chelsea's favorites! She loves making the prince and princess talk/ kiss, and changing outfits all the time. Same thing with the dress up stickers- the little ones get lost sometimes. But usually, Chelsea just cares about the dresses, so oh well

  • Glow sticks- Seriously the best thing for night travel! 

Thursday, June 14, 2018

Monster Day

As often as possible, and especially during the summer, I try to do home learning activities with my kids. And to make it more interesting, for them and myself, I vary the themes. This time, it was a Monster Theme!!!

Stories: Go Away Big Green Monster, Sesame Street stories, Fun with Ed and Fred. (I really like the Big Green Monster for the repetition, and Fun with Ed and Fred is a great early reader book with good sight words)

Songs: 5 Little Monsters Jumping on the Bed, and 10 Little Monsters. My son loved acting out the "jumping on the bed" part

Reading: I had Chelsea read some of the words in the books we selected for today, after I had already read through them. I also asked both kids questions like, "What did Cookie Monster wish for in this story? Did he get what he really wanted? What did he get instead?"

Writing: For Chelsea, I had her trace the letters for the word "Monster". I had my son sound out and spell "M is for Monster"

Gross Motor: We have a string puppet "monster" that the kids took turns using to chase the other all around the park. They were laughing hysterically by the end and it was LOTS of fun!

Movie: Naturally, we had to watch Monsters, Inc!!!

Art: I gave the kids some random craft supplies- markers, ribbons, feathers, cotton circles, all sorts of things. And had them create their own monster. There was glue all over, and the kids were SUPER happy!

Fine Motor: This was went along with art, and I had the kids cut some things. Chelsea is still working on cutting several snips in a straight line, and I had my son cut out an M. Chelsea used adapted scissors that pop open

Wednesday, May 30, 2018

What is Most Important?

I recently attended a workshop that was titled "What Does My Child Need to Learn?" The whole basis of the workshop was about teaching kids the things that matter most in the long run. 

This was something I really struggled with, especially in the preschool/ kindergarten years with Chelsea. I still had the subconscious thought that she would naturally pick up life skills, so I should focus my energy on academic work. 

But as Chelsea is getting older, I can see that while reading and math are important, and we will continue working on those, there are more important things that she needs to know in order to have a happy life. 

I need to look at her future in 10, 20, or 40 years, and think about what I want her to be able to do then. Do I want her to have a job? What skills does that require? 

How about living arrangements? What does she need to be able to do in order to take care of herself?

Think about social skills. We all want our kids to have friends. And that means she will need some hygiene and social skills.

So considering all of that- what do I need to teach her NOW and practice for years so that she will be in a good position in 20 years? 

What Do We Work On?

1. Potty Training
Learning to use the bathroom independently is a HUGE life skill! It would be much easier for Chelsea to socialize with friends, she will need less help from others, and it opens doors for day programs and living arrangements that otherwise wouldn't be available. 

I wrote about how we potty trained Chelsea HERE

2. Dressing Self
Chelsea needs to be able to get herself ready for school or work in the morning. That will mean taking pajamas off, finding clean, matching, weather-appropriate clothes and putting them on, taking care of snaps, buttons, ties, zippers, etc. 

There is a lot that goes into dressing one's self! To help Chelsea learn how to get ready in the morning, we developed a morning routine that we do diligently every morning. I blogged about it HERE.

I know it is WAY easier and faster to do things for Chelsea myself- to brush her teeth, get her dressed, make her bed, and she would happily let me! BUT, I don't want to be brushing her teeth for her when she is 15. I don't want to be getting her dressed when she is 30. 

It is much easier to make her do these things herself now when she is a manageable, teachable size, rather than an adult who has had a life time of not needing to do these things for themselves, so they now refuse and are strong enough that you can't make them. 

3. Personal Hygiene 
This one goes along with the morning routine above, as in we need Chelsea to wash her hands and face, brush her teeth and hair, things like that. But we will also be teaching how to take a bath/ shower. That she needs to use deodorant. When she is older, how to handle her period hygienically (oh be still, my soul!)

4. Health Care
We have been very fortunate that Chelsea is such a good eater! (Sometimes too good of an eater- she just ate cherry pits and stems today) She never complains about eating a variety of healthy foods. That is a big one here- your child needs to eat a well-balanced diet and take a multi-vitamin. 

Chelsea will need to know how to clean a minor cut and put on a Band-Aid, and KEEP IT ON. 

Exercise is important! Sitting in front of the TV all day isn't good for her body, so she needs to know that she needs to have some physical activity each day. 

Later on, she will need to know how to take her medication herself. Since she has osteopenia and a seizure disorder, that will mean a Calcium supplement and seizure medication. 

Get enough sleep! It is important to get enough rest, and Chelsea will need to be able to put down whatever activity she is doing at bedtime and go to bed, and stay there until it is time to wake up.

5. Cleaning
Who wants to live with a filthy roommate? It is important to clean up after ourselves. Starting when they are little, we teach kids to pick up their toys, put dirty clothes in the hamper, and clear dishes after eating.

As they get older, we teach them to make their beds, tidy their room, vacuum, and wipe up any spills they make.

Eventually, we want our children to be able to care for themselves, do the dishes and laundry independently, scrub the kitchen and bathroom, and things that make a house livable and neat. 

6. Food Preparation
This is a big one! People eat several times a day, and there are a LOT of steps that go into eating most of us never think about! 

How do we get the food in the first place? We need to think about what we need, make a list, go to the store, find each food on the right aisle, handle the transaction, go home, and put the food away in the right spot so it is available. During the summers, I have Chelsea do her own list with cut-outs from ads. 

Then we need to make sure our hands and cooking surfaces are clean, get the right ingredients (even for a turkey/ cheese sandwich!), make the food, and put everything back away so it doesn't go bad. 

So I want Chelsea to know how to make some basic things herself, starting with a bowl of cereal for breakfast, a sandwich for lunch, and how to heat up food for dinner. 

Eventually, we will progress to other things, like salads and pudding, meals from boxes, and things like that. But one step at a time!

Bottom Line:
WOW! That is a LOT that we as parents need to teach consistently! And when we already have a child that struggles with basic things and has behavior problems... It is a daunting task for sure!

What Do We NOT Work On?
Knowing we have to work on so many skills with our child and teach something for years on end will mean that some things get dropped. We can't do it all.

Only you know your child well enough to know what they need to know. For us, a lot of academic trivia will never be learned. Chelsea probably won't learn the types of cloud formations, or the habitats of different animals, or about photosynthesis. 

She will most likely not ever learn algebra or who discovered America, because those things won't matter to her long term. But you know what? She WILL know how to do some basic grocery shopping, make a sandwich, socialize with friends, do a job she enjoys, and shower.