SATB2 Resources

Very simply put, there are not many resources available right now for information. We do have a phenomenal geneticist who is researching SATB2 Associated Syndrome (our parent group lovingly refers to him as Dr. Z), and he recently put together an awesome website, and it is my new favorite!!! SATB2 Gene

I love this shirt- I CAN. I WILL.

As parents of kids with SATB2 Associate Syndrome, we have an amazing support group on Facebook, and if you are a parent of an SATB2 child, we would love to have new members! We enjoy each and every story!

If you are not a parent, we do appreciate the support, but there are some things we would rather only share with other parents who have the same daily struggles.
SATB2 Syndrome Facebook Group

There is also a group: Unique Understanding Chromosome Disorders. They have a brief, 2 page article about SATB2 Syndrome:

SATB2 Syndrome

And a much more in-depth article (28 pages) on a 2q33.1 deletion, which encompasses the majority of SATB2 kids:

2q33.1 Deletion

Car Kit

The BEST thing I made for our 3 day cross-country move was... a car clean-up kit!!! Seriously, it saved my life multiple times! Chelsea usually throws up about an hour after starting out in the morning, so it was so nice to have all these things in one spot and ready! Here is what I brought:

1. Extra clothes! I put an outfit for each of my kids, and two for Chelsea. During a road trip, I really don't want to dig through the kids' suitcases for a new set of clothes, so I have one ready and waiting- underwear, pants, shirt, socks, everything! I also put in pullups as a precaution

Roll tight and rubber band to save space

2. Carpet/ Upholstery Cleaner with brush. I think this Woolite cleaner is my favorite cleaner in the world!!! So easy and quick to use! And used every day on the trip!

3. Water, washcloth, wipes, paper towels. I have two small bottles- one for drinking and getting the nasty flavor out, the other to use for cleaning purposes, along with the washcloth, wipes, and paper towels.

4. Air freshener, for obvious reasons. You could get the car air freshener ones, I just like these scents of these, and I roll them under the seat or stick them behind car seats.

5. Plastic bags. One for trash, one for clothes, one extra because better safe than sorry.

6. Toothbrush, toothpaste, mouthwash. Throw-up taste is truly horrendous, and I have tons of extras from every time we go to the dentist anyway. I also tossed in a pack of gum, which works well for Chelsea- she doesn't "get" the concept of gargling yet.

7. Quarters and some laundry detergent. We stayed at motels that had a washing machine, and it was HEAVEN!!!! Chelsea always threw up on her special blanket, so this was a lifesaver! After the kids fell asleep at 8pm, I would stay up until 10pm, cleaning out the car while I waited for the washer and dryer to be done.

8. Hairbrush and hairties. Any time Chelsea throws up, she starts thrashing around in her seat, and it always makes me feel better to have my hair pulled back and out of my face, so I threw in an old hairbrush.

Travel Fun

Our family is moving across the country, driving for 24 hours spaced out over three days. In order to keep the kids entertained (and me sane), I planned ways to keep them entertained for driving 8-10 hours a day. I can't take all the credit on this one- my stellar mom gave me a ton of ideas here!

1. Busy bags! I already blogged about this one, and the kids love them! Super easy to stash in a box, and switch out bags at rest stops! BEFORE you go on the road trip, teach the kids how to use the busy bags! That means, sit down with them for 5 minutes with each bag, and show the "right" way to play with it.

2. Books! I am very fortunate to have my mom driving back with me, and she is willing to read books aloud, and the kids will listen to stories for hours! PLUS I packed some of their favorite books that they know so well they are basically memorized!

3. Play car games! One of my first blogs ever was about some easy speech games to play in the car, and I also did one about some working memory games, which are harder and require more effort, but are so good for developing brains!

4. Coloring Books and Water Wow painting books. These are Melissa and Doug products, my favorite company EVER!!!! The markers only color those pages, nothing else, AND the water wow only uses water!

5. Rest Stop Toys! A ball to chase (just like fetch with a dog, but kids are way cuter!), flying toys, Frisbee, etc.

6. Busy Boxes! Very similar to busy bags, but everything can stay in the box. We made dinosaur and ninja play boxes, a lego box, and an art box. This one is the one I am most proud of:

7. Coloring Books! I have several different ones here, with some crayons packed as well. They loooove to color, for about 10-15 minutes. Then they get to switch coloring books, since kids always want what the other has anyway!

Halloween, Dory, church, pirates, minions...

8. Glow Sticks! Driving in the dark can be difficult- you can't look at books or color, can't see for busy bags/ boxes, and I don't like them watching movies before bed, so the solution is- glowsticks!!!

9. Sing songs! I made Chelsea a picture songbook, where she can point to pictures of songs she likes "Three Blind Mice" or "Hush Little Baby". Since she can't read yet, it works out great, and I can glance quickly at the picture instead of trying to read the titles of songs. And she has something to look at while we sing. (Yes, I am aware that I am a terrible artist, but Chelsea likes it anyway!)

10. Printable Pages! Scavenger hunts, cars and roads, bingo... So many options! (Best to laminate these or put them in sheet protectors for easy cleaning and re-use)

11. Movies. We did two screen-free weeks prior to our trip, so I was okay with them watching 3 movies a day, especially during those loooong desert stretches with nothing for 2+ hours at a time. I loaded them onto the iPad and wedged that between the front seats. Because that is 3.5-4 hours of peace and quiet, and who doesn't love the Disney princesses???

12. Re-useable stickers! Another Melissa and Doug product (seriously love these guys!), and I LOVE these in the car! Not only can you stick them on the habitat pages they have, but the stickers can ALSO stick on the car windows!!!!

Tips:
- Stay organized!!!! I turn into a complete psycho when things get disorganized and messy, so I like stopping every two hours for a potty and snack break, to stretch our legs, and clean out the car! Exchange busy bags and books to keep things fresh, throw away trash, etc. It makes me feel sooo much happier!

All my busy bags and boxes, coloring books, etc. Nice and organized!

With the prize bucket in there as well!

- Have a prize bucket! We had a little box of plastic animals, small magnadoodles, cheap toys and snacks, all that jazz. The kids get to choose something at each rest stop, and they get super excited!

- Indulge. My weaknesses are Dr. Pepper and Peachie-Os, so I'm going to treat myself for staying cooped up in a tiny space with stir-crazy children for three days!

- Remove as much packaging as possible BEFORE the car trip starts! This means the wrap around stickers, take prizes out of their boxes, have everything ready to go! Less trash and far less frustrated kids when they are trying to open stickers or get out a game. My goal was no trash in the car!

- Snack bag! This is a no-brainer for any parent, and I like snacks too!!! I just hit Costco and got the boxes of things like crackers, squeeze applesauce, fruit snacks, etc.

I wanted to do this, but I think it would end up dumped...

- Pack the pillows in the car! I put pillows between the seats to prevent the kids fighting and also for easy reach to fall asleep.

Alphabet Soup of IEPs

Welcome to the alphabet soup of special education!!! Just about every special needs parent knows all about the many, many acronyms used in IEP meetings. But for those parents starting out, or our amazing friends who have no idea what we are talking about, here is a quick cheat sheet:

On Your Team:

LEA- Local Education Agency representative (usually the principal in elementary schools, or assistant principal in other schools)

SLP- Speech-Language Pathologist/ Speech therapist

OT- Occupational Therapy (not overtime!)

PT- Physical Therapy

APE- Adapted Physical Education

Others:

ABA- Applied Behavior Analysis

AAC- Alternative Augmentative Communication

ADLs- Activities of Daily Living

ADA- Americans with Disabilities Act

BIP- Behavioral Intervention Plan

DD- Developmental Delay

EI- Early Intervention (which has some of it's own terms)

ESY- Extended School Year

FAPE- Free Appropriate Public Education

IDEA- Individuals with Disabilities Education Act

IEE- Individualized Educational Evaluation

IEP- Individualized Education Program

LEA- Least Restrictive Environment

NCLB- No Child Left Behind Act

PLAFP- Present Levels of Academic and Functional Performance

SPED- Special education "sped"

Busy Bags

I love, love, LOVE busy bags!!! We have a road trip coming up (and I like my kids to stay quiet during church and crazy afternoons), so I spent all my spare time putting together 22 busy bags!!!

I was fortunate enough to find lots of binder pouches on clearance for 50 cents each, and love the see-through fronts so I know what is in them. Here are the ones I made:

1. Sponge Building! So easy- I just cut up sponges, and we build them like portable, quiet Lincoln logs!!!

2. Jumping frogs! Just a cheap game I found at the dollar store, and Ryan gets the biggest kick out of it!

3. Princess Dress-up! Chelsea has had these for ages and LOVES them! I wish we had every princess!!!

4. Flyswatter Webs. I snapped the swatter off of a free flyswatter (unused guys, don't freak out), and use a shoelace to make spider webs. I want to find bugs to wind up in there too.

5. Pom-pom Pick-up! Use a clothespin to pick up small and large pom-poms and sort into small tupperwares. Great for hand strengthening!

6. Shoelace straw stringing. I don't like giving the kids beads without supervision, because they get everywhere! So I cut up some cheap straws and have them thread those. The kids are amazed because it takes them longer to thread the straw

7. Popsicle Matching! I used a hot glue gun for the first time on these bad boys! I sewed different colored felt into a popsicle shape, then glued a swatch of the same color on a large craft stick, with the name written on the opposite side. The kids have to match the correct colored stick to the right popsicle. They usually end up playing "Sell ice cream" which I think is super cute!

8. Rub-off drawings. I found these at the dollar store as well, so tossed them in a bag with a clothespin to do the scratching. As you rub the black, colors appear underneath

9. Beginner Buttoning. I was told not to expect Chelsea to learn how to button for years and years, so I got the idea to make this! I got the biggest freaking pom-poms I could find, then sewed them onto strips of felt, with a huge + shaped cut on the other side. I can either make a chain or just link them together, and CHELSEA CAN DO IT!!!! Woohoo, don't tell MY kid what she can't do!!!!

10. Glow Stick Sculptures. My little man LOVED this one! I got different straw connectors (build a straw kit) and hooked up glow sticks.

11. Whisper Tube. This is a fun one for the car as well, because we can hook tubes together and whisper from the front of the car to the back. I call it the whisper tube because every kid I meet yells into it at first. We also can put a marble and make it roll around in there, or make it a crown... I love these pop-open tubes!

12. Button Boards! I got a couple cute buttons (one hole on the back is best!) and sewed them onto a piece of felt, then hot glued the felt onto a piece of cardboard. Same thing with the back. Then I cut different shapes out of different colors (With slits in the middle!) of felt for the buttoning part.

13. Button Snake. Can you tell that when a professional tells me Chelsea can't do something, I have to go out of my way to prove them wrong? This is super easy, just sew a button onto a ribbon, and cute squares of cloth with a slit in the middle.  

14. Crazy Straws! Very similar to the button snake above, but with a crazy straw instead of the ribbon snake. My little guy liked the straws with the tight spirals- it made getting the pieces of cloth on much more difficult, and he loves a challenge!

15. Paint In a Bag!!! One of the most popular of all busy bags, though I throw this one together in the moment, I don't keep spares. I put a couple globs of paint, glitter, and something fun (sequins, googly eyes, whatever) into a Ziploc bag, then tape it closed with packing tape. I also double-bag Chelsea's, since she likes to scratch hers. Then I tape them to the window! They like to mix colors in there, and you really only need a little paint. Too much and it sinks to the bottom.

16. Whiffle Ball Threading! I love the pipe cleaners in colanders, and this just makes it portable, since I don't like hauling around my kitchen bowls!

17. Velcro Stick Building! Another favorite! I colored craft sticks, then stuck Velcro on the ends, and let the kids build things- letters, shapes, whatever they want, with them. Oddly addicting, even for adults, so watch out!

18. Clothespin Words. Chelsea doesn't love this one yet, but my little guy is reading, so it fascinates him. I put letters on both sides of clothespins, then they have to spell the word. A word of caution though- you may want to check the opposite sides when writing the letters; if you flip over the card below with those clothespins on, it spells a naughty word. Oops...

19. Name Match-up! I colored craft sticks, then wrote names of favorite people/ characters (Minnie Mouse, Mommy, Daddy, Ariel, etc)

20. Sticker Baggies. This was probably one of the easiest to make, and the kids looooove stickers! I cut up some card stock, then put some stickers in the bag with it. That is all!

21. Paper Dolls. Chelsea doesn't have the fine motor skills to dress a bear/ doll and keep it dressed (and to be totally honest, I struggle too!), so I just taped the clothes on, and they have portable dollies that don't take up space!

22. Cutting! I love these pop-open scissors because they cut almost nothing other than paper! I drew designs onto cardstock, and the kids try to cut on the black lines!