Monday, June 27, 2016

Nutrition for SATB2 Syndrome

Kids with SATB2 Associated Syndrome have many different dietary needs because of the many components of the genetic disorder affecting them, such as allergies, osteopenia, low myelination of neuronal axons, and the side effects from seizure medication.

Here is what I do for Chelsea's diet:

1. She is GFCF (gluten-free and casein-free), and from some of the other moms I talked to, this is a pretty common allergy. I was very, very strict about this diet for two years, so her gut had time to repair. Now we still stay very low with gluten and casein, but can occasionally cheat.

We started going gluten free because allergies run in my husband's family, and I think it was beneficial, plus it got us eating healthier as a family, so that was a bonus too! Chelsea's diet means a bunch of fruits, veggies, and lean meat.

2. Calcium supplement! Many kids who have SATB2 Syndrome also have osteopenia (low bone density). TO combat this, I give Chelsea a calcium supplement that is also fortified with Vitamin D. That is super important! Calcium and Vitamin D go hand and hand. Additionally, certain brands of seizure medication also contribute to poor bone development, so ask your pharmacist about the side effects of the medication!

We had a really rough time finding a calcium supplement that Chelsea would take- she rejected or gagged on most. The kind pictured above is perfect for her! It looks and tasted like a chocolate tootsie roll, and it is her reward if she eats all her other vitamins. It is geared towards older women, but I had her doctor take a look at it, and it is perfect for Chelsea's age to take one per day.

3. Daily supplement of fish oil! This one helps with brain myelination. Pretty much, the more fat that coats your nerves coming out of your brain, the faster the impulses move. This helps with motor control for speech and gross and fine motor. I use a brand specific for Apraxia- Nordic Naturals ProEFA3-6-9.

These capsules are soft gels (see below) that I puncture with a toothpick, then squirt into Chelsea's mouth. It took a little while for her to get used to the sensation, but she is fine with it now.

4. Wide variety of fruits and veggies! This one has several reasons, and I know it can be very difficult for kids with sensory issues. First, I already explained that her diet allowed for mostly fruits and veggies, so we don't have a ton of other options. But also, I want her exposed to a bunch of different food because in my college Nutrient Metabolism class, we were able to research different phytochemicals (micronutrients) that appear in different foods.

Bottom line- the wider variety of fruits and veggies you eat, the more nutrition your body gets. Plus, I am terrified that she will get addicted to 3 foods and eat nothing else. (But eating some food is better than none! So you amazing moms whose kids eat only bread and hotdogs, fed is best!)

5. Probiotics! Between the ages of 18 months and 3, Chelsea rarely had a time when she was NOT sick. She constantly had a drippy nose, cough, and I could not keep that girl healthy despite my meticulous diet planning (and I had TONS of nutrition and diet classes in college!). Finally, I went out and got a bunch of casein free yogurt and probiotics, and poof! It was a magical transformation!

Now, Chelsea is rarely sick, her diapers are WAY easier to take care of, and she can actually go to school instead of being kept home because of illness all the time! In choosing probiotics, I pick out kid-specific ones, but change the brand every time so that her body doesn't become resistant to a specific probiotic strain, and the more billions are in there, the better! Here is the her favorite kind:

Good luck!!!

Friday, June 24, 2016


Today's topic- HOW do I pay for therapy? Speech therapy can be anywhere from $70-$250/ hour, and your child may go 3-5 times a week! Same story for occupational therapy, physical therapy, and then there are the medications, materials for home therapy practice, etc. So here are some things I have done to continually fund Chelsea's therapy!

1. Apply for grants! My favorite grant was United Healthcare Children's Foundation. They gave Chelsea $7,000 over the course of 2 years for speech and occupational therapy. Small Steps in Speech also gave Chelsea an $800 grant for speech, and we got a sensory hammock through Challenged America that helped immensely with her meltdowns.

2. Get another job. This isn't a fun, easy money answer, but it has been our best source of funding. My stellar husband works 2 jobs (and has done 3 at once!) in order to payroll Chelsea's therapy, and I work part time. And we have gotten Chelsea so much more therapy because of it!

3. Learn everything there is to know IEPs. Then fight HARD! Get the Wrightslaw books and come into every IEP with a plan! Remember- writing in a weekly 30 minute session to an IEP over the course of a school year is like deducting around $2,000 from what you would otherwise pay!!!

4. Hound your insurance to pay for therapy. Appeal, then appeal again. Talk to HR at the company you get it for; explain the situation. I was told that Chelsea's condition was so rare, it "didn't count" for getting therapy funding. But getting insurance to pay for 20 visits/ year is 1-2 grand less for me!  

5. Hold a fundraiser. (I will tell you a secret- I hate fundraising with a fierce and burning passion, but I was willing to do it for Chelsea) I had an amazing friend who helped me put on a garage sale fundraiser one year when we had zero money left for Chelsea's therapy. People from our church and neighborhood donated things, and we raised $3,000! I know another mom who sold glow sticks to fund her kid's therapy.

6. Set up a GoFundMe account. People very generously donated to Chelsea's therapy account, and we raised another $2,000!

I know that there are no easy answers, and finances can be a very touchy subject. We have been very, very fortunate with finding sources to help pay for Chelsea's therapy, and wish the best of luck to everyone else!

Sunday, June 12, 2016

Therapy Rewards

The last 2 blogs Basics of ABA and Common Problems were done by my awesome sister Brittany, who is an ABA therapist. This blog is a list of some of Chelsea's favorite rewards for doing therapy. We have to change the reward just about daily, so she doesn't get bored of it.

Physically Active Rewards

v  Super girl

v  Pop Goes the Weasel

v  Toss Chelsea in the air

v  Do a somersault

v  Peekaboo/ Hide and Seek

v  Horsey Ride

v  Chelsea, Chelsea Dumpling

v  “I’m Gonna Get You”

v  Wash the Dishes, Dry the Dishes

v  Ball play- catch, kick, throw

v  Piggyback rides

v  Be tipped upside down

v  Trit to Trot to London

v  This is the Way the Ladies Ride

v  Chair rides- Rock, swivel, lift, blast-off, etc. with chair and Chelsea in it

v  Big Jumps! Hold Chelsea’s hands and have her to big jumps

v  “Chelsea Burrito”- Roll her up in blanket, then unroll quickly

v  “The Claw” or Mouse crawling up body to tickle under chin

v  Swing at the playground (see video below)



Musical Rewards

v  Sing a song from binder

v  Dance to music

v  Play the recorder or harmonica

v  Play on little piano (video of Chelsea playing piano with her grandma below)

v  Pot drum banging

v  Dance freeze


Sensory Rewards

v  Play with water in sink

v  Put Chelsea's hands on top of your hands. Count down slowly and with anticipation 5-4-3-2-1. Then yell "blast off!" and fling the child's hands into the air.

v  Playdough or bubbles

v  Build and knock down dominos

v  Trips through a sensory tunnel! (See video below)

v  Hold Chelsea’s legs while she is sitting and say “Walk walk” while moving them slowly, then “Run run run!!!” and move them fast

v  Blow raspberries on Chelsea

v  Pick up Chelsea's foot and pound on the bottom of it with the side of your fist (with or without shoes on the child).

v  Blow air into the sleeves or back of a child's shirt.

v  Massage or put stickers on Chelsea. Great way to teach body parts!


Artsy Rewards

v  Draw

v  Color pictures

v  Rubber stamp on hand

v  Let Chelsea rubber stamp a paper

v  Paper airplanes


v  Pretend: pirates, princess, cowgirl, dog, etc

v  Silly noises and faces

v  Train rides- line up chairs and go for “ride”

v  PU! You have stinky feet! Pretend to smell and wave hands, etc.

v  Blow up a balloon and let it whiz around room

v  Blow up a balloon and make it “cry”

v  Draw buttons on paper, have him press one – it makes you “glom” (make something up!) press another one, you stop, another, you hop. Chelsea never knows quite what will happen

v  “It’s Coming back!” Attach a soft toy to a long rope and let Chelsea hit it away, and then… “It’s coming back!!!”

v  Slowly lower a Kleenex in front of your face, then blow forcefully on it and let go so it zooms across toward the child

v  Hand over hand game, place hands on top

v  Have Chelsea push a pretend button to turn on a kissing monster machine!

v  A huge, over exaggerated sneeze “The Big Sneeze” and fall over

v  Trap Chelsea with legs and have her try to “get away”


Low-Key Rewards

v  Read a few pages in a book

v  Look at Jesus pictures in flip book

v  Play baby dolls

v  Play kitties

v  Hug/ snuggle

v  Puppet show, make puppets “eat” Chelsea

v  Car races

v  Hide in tent/ hideout and “find” Chelsea


v  iPad for x amount of time

v  Watch x minutes of movie

v  Fruit snacks or healthy treat

v  Help make cookies, one step at a time


ABA Common Problems

As a continuation of the previous blog Basics of ABA, we have another guest blog from Brittany Mealey on "Troubleshooting Common Problems" with ABA.


My child exhibits behavior problems when it’s time to begin therapy.

First and foremost, reconsider whether or not your reinforcer is still effective. Is your child CURRENTLY (at the time of therapy) excited about getting whatever you are using as the reinforcer? If not, pick something else!

Second, show him the reinforcer before you tell him it’s time for therapy. When he reaches for it, tell him excitedly “You can play with it/eat it at the table, come on!” and start walking towards the table. When he comes and sits at the table, give it to him for about 30 seconds before you have him do any therapy.

Third, make sure you are doing therapy at the right time. Don’t do therapy when your child is tired, exceptionally hungry, or cranky for any other reason (although a hungry child will find edible reinforcers particularly motivating, so if you are using edible reinforcers then you will want to start therapy an hour or two before a meal!). Pick the time of day when your child is feeling his best and is generally the happiest.

Fourth, don’t come to therapy straight from something super fun. Start therapy when your child is either not engaged in doing anything, or is engaged in an activity he sort of likes, but probably wouldn’t mind leaving. Give him a warning first, too: “Guess what?! In five minutes, we are going to do therapy and earn some M&Ms!!” and set a timer.

Fifth, make sure your tone of voice communicates that therapy is fun! If you are barking out orders like a drill sergeant, or if you are saying things like “Now it’s time for therapy, and you’d BETTER be good or you will get NO M&Ms and go to time out!” then your child will not get the message that therapy is a good thing. When it’s time for therapy, act excited about it and remind him frequently that therapy is awesome because he gets to earn M&Ms (or whatever the reinforcer is).

If you are doing all these things and you are still experiencing problems, there are more things you can do. Just leave a comment and I will help you further!

My child doesn’t pay attention during therapy.

If your child is exceptionally distractible, you may need to create a distraction-free area for therapy. Pick a corner that doesn’t have any toys or pictures or anything around and put your table there. You sit on the side of the table that is by the wall, facing away from the wall, and your child sits facing you, towards the wall.

My child does the actions randomly when she wants something, outside of therapy, without me asking her to imitate anything.

You don’t want to teach her that just doing the action gets her a reinforcer – teach her that imitating you doing the action when asked gets her a reinforcer. Outside of therapy, if she does this, ignore it and hold her hands down. Wait about 5 seconds, then give her another way to ask for the thing she wants. Help her point, sign, or whatever it is that she usually does to let you know what she wants. Only then should you say “Oh, you want ____? Good pointing/signing!” and then give it to her.

What do I do if my child does the wrong action (e.g. you were testing to see if he’d do it himself, and you modeled patting the table and he patted his head instead)?

1)      Say nothing. Don’t give the reinforcer.

2)      Take his hands and reset them in the “wait” position and wait 3 seconds.

3)      Give your instruction again (“do this” and pat the table).

4)      Before he has a chance to get it wrong again, immediately physically prompt the correct action.

5)      Give praise and reinforcer as usual.

6)      Keep physically prompting this skill every time until your next therapy session or even later. He should have little to no chance to practice the wrong thing.


Basics of ABA

This is a guest blog by Brittany Mealey, a Registered Behavior Technician with 8 years experience with ABA, and currently finishing her master's thesis.

We also have another blog on troubleshooting common ABA problems.

How to Use ABA for a Child with SATB2

The most important principle in ABA (Applied Behavior Analysis) is positive reinforcement – in layman’s terms, rewards. This includes rewards such as praise, tickles, and high fives, as well as tangible rewards like candy or favorite foods, stickers, toys, privileges, and favorite activities. In ABA, these rewards are called “reinforcers”. This is how you are going to motivate your child to participate in therapy.

So to start off with, try to identify your child’s best reinforcers. Ideally, pick something your child LOVES, but doesn’t often get. Getting to play games on your phone or tablet is often effective for many kids, as is blowing bubbles, or small treats like M&Ms or Goldfish crackers. But those are just suggestions – you know your child best, and the most important thing is to make sure whatever you pick is MOTIVATING to your child! I can’t stress this enough:


Remember also that kids’ interests and motivations change, sometimes minute to minute! Understand that what worked last week, or a day ago, or even two minutes ago to motivate your child may not work now. If your child is losing interest, he may need a break, or may simply need a different reinforcer. You can allow him to choose between things you think may be motivating by showing him his options and allowing him to reach for or point to the one he wants. Whatever you choose as the reinforcer, in order to have maximum effectiveness, make sure your child DOES NOT HAVE ACCESS to that reinforcer for ANYTHING ELSE other than therapy. For the sake of simplicity, I will write the rest of the blog as if you are using M&Ms.


There is a difference between bribery and positive reinforcement. Bribery implies that you are giving a reward to someone in return for them doing something dishonest. If you disagree, and you view any reward as bribery, then you must also accept that your boss “bribes” you (with money) to go to work, that your teachers in school “bribed” you (with good grades) to do your schoolwork, and that you “bribe” your hairdresser (with money) to give you a good haircut. Offering an incentive for doing good work is not bribery, and that is all you are doing for your child.


Maybe at first, but it won’t be that way forever. Speaking is a really difficult skill for your child right now. If someone asked you to learn something that was really hard for you (e.g. trigonometry, or advanced chemistry), you would probably resist it too, unless you could see that there was a point to learning it. Right now, your child likely doesn’t understand that there is a point to her speaking, so she has no motivation to learn it. So you’ll need some artificial motivation (M&Ms) to motivate her to learn enough speaking skills to where she starts to realize that speaking helps other people understand what she wants – and then she will speak because she finally sees a point to it, and she won’t have a need for you to use M&Ms all the time.


Learning how to speak, sign, or really any new skill, requires the ability to imitate (copy) someone else.  You have to know how to imitate in order to add a brand new sign, sound, or word to your repertoire. If your child doesn’t yet have the skill to imitate you, that is the very first thing you need to teach him. Even though speaking is most likely the end goal, it is easiest to start with teaching imitation of motor skills, because you can physically help him be successful. After he can imitate motor skills, you can move on to things that will help more with speech.

There are two different types of motor skills: gross motor and fine motor. Gross motor tasks are physical tasks that use the larger muscles and create large movements (like waving arms, patting a table, kicking a ball, or standing up). Fine motor tasks are physical tasks that use the smaller muscles and create smaller movements (like doing the sign language alphabet, picking up a Cheerio with a finger and a thumb, or wiggling fingers).

You will want to start with gross motor tasks, because you will need to physically help your child imitate you, and it’s easiest to just grab and wave his arm than to try and force his little fingers into a specific shape. The gross motor task you choose needs to be one that your child already knows how to do— because you aren’t teaching him how to do an action – you are teaching him how to imitate an action, and he won’t be able to imitate if he physically can’t do the action yet. Some possibilities are: patting his head, patting a table, raising his hand, or waving. For the sake of simplicity, for the rest of the blog I will write as if you chose patting the table.


1)      Sit your child in a chair at a table, and get her attention.

2)      Show her the reinforcer (visible but out of her reach), then say “wait” and simultaneously place your child’s hands on top of one another, resting on the table. Hold her hands there (using one hand) for 3 seconds.

3)      When 3 seconds are up, say “do this” (NOT “pat the table”) as you pat the table with the hand that is not holding your child’s hands down. As soon as you finish patting the table, immediately, before she has a chance to do the wrong thing, reach over and take your child’s hand and make her pat the table (this is called a physical prompt – you are physically showing her muscles how to make the right response).

4)      Immediately PRAISE enthusiastically (“WOOHOO, you did it! You copied Mommy! I am so proud of you!”) etc… while simultaneously giving her her reinforcer. It actually helps a lot if you have someone standing behind your child who can help with both arranging your child’s hands for “wait” and prompting your child for patting the table, as this way you can concentrate on praising and delivering her reinforcer. It also decreases the likelihood that your child will become dependent on you prompting her.

5)      Give her about 30 seconds with her reinforcer if it’s time with a toy, or let her have time to eat it if it’s edible. After 30 seconds, move it out of her reach and immediately begin again with steps 2 through 4. Wash, rinse, repeat… for as long as she is motivated for the reinforcer.  Once you can tell she is starting to lose interest (but before she is actually showing any bad behavior), call it a good therapy session and go off and do something else for a while.


Once you have been physically prompting your child for several sessions, you can test him out by saying “do this” and patting the table, and then only halfway prompting him to do it (maybe take his arm and lift it towards the table, but don’t pat for him) and see if he will do the rest by himself.

If he does, throw an even bigger praise party for him “Wow! You did it by yourself!” and give him about twice as long with his reinforcer (or give him twice as much if his reinforcer is edible). Then the next time you can test him by prompting him even less, or maybe even not prompting him at all. The more he does independently, the bigger the praise party and the more reinforcer he should get.

If he doesn’t do the rest by himself, it’s okay. Prompt him the rest of the way so he can still be successful, and just keep chugging along with your complete physical prompts and keep testing him out occasionally to see if the concept has clicked yet. Some kids will get it quickly (3 or 4 times and they’ve got it), others will take longer (several days’ worth of therapy), and others will take still longer (a month or more). Every child learns at his or her own pace.


Once she can imitate you patting the table by herself, move on to teaching another gross motor task, such as patting her head, raising her hand, or similar – in the same way as you taught the first skill, complete with immediate physical prompts. Once she has mastered two or three different tasks, start to mix them up. For example, in the same session you can ask for patting head once, then raising hand once, then patting head again, then patting the table, etc. Aim for teaching at least 8-10 different tasks.


After you have taught 8-10 different tasks and your child can easily imitate all of them presented in any order, you can test to see if he really has learned the skill of imitation. You can test him by saying “do this” and then doing a brand new gross motor task that you haven’t specifically taught yet (still one you have seen him physically do before, though), and DON’T prompt him at all. If he copies you successfully, celebrate! Your child has officially learned how to imitate, and that is a HUGE milestone that will help him immensely in learning how to speak or sign!


Congratulations! Where you go from there will depend on whether you want to focus more heavily on signing or speaking. If you want to focus more heavily on signing, move to fine motor imitation. Teach her the signs for her favorite things (you can look up specific signs on the internet). If you want to focus more heavily on speech, move to oral motor imitation (things like opening mouth wide, sticking tongue out, closing lips tightly, and smiling).

Best of luck to you all!

Thursday, June 9, 2016

Summer Physical Therapy

Physical therapy is the area easiest for me to do with Chelsea. We started when she was 10 months old, and my degree is in Exercise Science. We really try to work on this daily, not only so she can try to keep up with her peers, but also because she has low bone density and I want her to have a long, full life! Here are some fun PT ideas!

  • Crab walks or play crab soccer

  • Trampoline! This can be a little home one, a big one at the gym, or going to a bounce house or trampoline gym (which is Chelsea's favorite)

  • Walk in different ways. We do these in the store, or on walks, etc. Walk on your tiptoes, heels, do big steps or baby steps, kicks, do butt kicks, high knees, squat walks, circle legs out while walking, or walk while carrying a heavy object (Chelsea carries my 10 lb soft resistance ball)

  • Animal walks- frog jumps, crawl like kitty, hands and feet like bear, flamingo one leg stands

  • Catch, kick, throw, avoid (like dodgeball), and strike (hitting a balloon with pool noodle, or ball with bat)

  • Wheelbarrow walks

  • Crossover (touch your opposite foot, knee to opposite elbow, etc)

  • Jump and leap! Try jumping jacks, leaping over an obstacle, or leaping from cushion to cushion to not touch the "lava floor". Fun fact: leaping will actually help with kicking- people do a mini leap before kicking