SATB2 Awareness Day

August 22nd is coming up, and do you know what that means??? SATB2-ASSOCIATED SYNDROME AWARENESS DAY!!!!! Woohoo!!!!

Not everyone has a lot of time, so here are some ideas for those of us who are strapped for time with the start of school and everything:

1. Take a picture of you holding up 2 fingers to represent the 2nd chromosome and post it on social media with a #ShowYourSAS hashtag!

2. Post a picture of your favorite SATB2 superstar and use the hashtag #showyourSAS (or) #mySATB2kid. Take a selfie with one of the four selfie signs and tag the SATB2 Gene Foundation. Don't forget to use #MySATB2Kid or #ShowYourSAS. Download your selfie sign today! 

3. Change your facebook profile to use the SATB2-Associated Syndrome awareness day border

4. Go to the SATB2 Gene Foundation website HERE to learn more about SATB2-Associated Syndrome! 

5. Join the SATB2 Gene Foundation facebook page HERE. The stellar mom who founded the organization posts cute pictures of SATB2 kids, great stories, and ways to get involved with the foundation!

For those people who want to get more ambitious, here are some other ideas of what to do!

6. Go HERE to download a fantastic information flyer about SATB2-Associated Syndrome, and distribute it to your pediatrician, school, dentist, or anyone else that is awesome and wants to learn about our superstar kids! Don't copy the picture! The download (totally free, don't worry!) is great quality and amazing!

7. Donate to the SATB2 Gene Foundation or host a fundraiser! Play to your strengths! I work part-time at a gymnastics gym, and asked them to host an open gym night with proceeds going to the foundation! Another family wanted to do a casino night, and others have done raffles. 

Families can create online fundraisers through Facebook, or explore other options like bake sales in their local community

8. Write a letter to the editor of your newspaper talking about SATB2-Associated Syndrome. It just may get published!

9. Do a presentation at your child's school/ daycare facility! Or if your other children want to present to their class, it is a wonderful way for them to get involved in a great cause and raise awareness at the same time!

10. Try out a disability! I loved THIS idea about a person who put on a disability awareness activity, and had people "try out" different disabilities. I have attended one of those before and it was very eye-opening!

BONUS: Write a letter to a parent of a SATB2 child expressing your support. Raising a child with a disability is so unbelievably hard! It is difficult financially, emotionally, martially, physically, and affects every aspect of your life! These parents need to know that they have a village out there!

SATB2 Sisters

After walking the SATB2 road with Chelsea for 7 years, our family was blessed with another sweet baby, Lily, who was also diagnosed with SATB2 Associated Syndrome! My husband said that we must have done such a good job with Chelsea that we got the chance for an encore performance.

With Chelsea, our 7 year old, we had to search for years to find her diagnosis, sorting through misdiagnosis after misdiagnosis. When she finally had documented results from a genetic test, it was a huge relief to our family to have finally found answers. 

When Lily was born, I had the nurses pull cord blood to test the SATB2 gene, just so I would have some reassurance that I would have a “normal” baby. When the results came back positive a few weeks later, my emotional reaction was a polar opposite from Chelsea’s diagnosis. For the two days after Lily’s diagnosis, I felt a crushing, devastating weight unlike anything I had ever experienced before. 

But after some intense emotional grieving, my husband and I found some wonderful benefits to having 2 sweet SATB2 daughters. We had already walked this walk before, and though we still have a long way to go, we already knew a lot of what to do now: the best therapy methods, which tests were useful, and what to not waste our time on. 

Another thing we thought of- we had always worried that Chelsea would be lonely, and feel left behind, after her brother left for college, and now, she will always have a best friend to be with always. Someone who will never tire of playing tea party and dressing up in princess dresses together. 

But more than anything else, we know how incredible Chelsea is, and that Lily will be just as amazing! Receiving a SATB2 diagnosis, whether your child is 2 months old or 20 years old, isn’t a shameful or ugly thing. It is a different road, but not a bad one! These kids are kind and loving and silly, and the magic of childhood isn’t limited to just a few short years.

Just like for any parent, there are difficult days. Days when you feel the weight of the world and when it seems like the school, insurance, and the government are all working against you, and you are the only one on your child’s side. Times when you are exhausted, overwhelmed, and almost defeated.

But then when milestones are achieved, the pride you feel for your child’s accomplishments are indescribable. The first word you thought would never come, or realizing that your sweet daughter was able to remember something you thought was too difficult, showing you again and again just how much she truly can do, instead of what she can’t.

As we look to the future, with both Lily and Chelsea, we know that while there will be struggles, we get to keep our sweet, SASsy girls forever, and that they will be best friends.  

What is the K-SLP method?

I am a super big fan of Nancy Kaufman and her method of treating Apraxia of Speech! It has worked wonders for Chelsea's speech progress. So- what does it entail? What is this mystery method?

When we first started speech therapy, we did the PROMPT method, which helps the child learn to make sounds. Once your child can imitate sounds, they can start the K-SLP method. 

Nancy Kaufman

What does K-SLP stand for?

K-SLP is Kaufman Speech to Language Protocol. It means taking a child's ability to produce a few sounds, and expanding it until they are able to produce language

What this method DOES:

1. Targets specific sounds and words, and has the child build a sound inventory, eventually leading up to the correct production of a word

2. Uses the natural environment for speech therapy- NOT just pictures and cards

3. This is highly motivating and engaging for the child! If they don't like speech therapy, something is wrong!

4. Models correct language, even if child can't imitate it yet. Reward their best effort, but YOU say it right!

5. Uses multi-sensory cues to help child remember how to form mouth/ tongue placement to make a specific sound. (meaning: say it correctly, use a visual cue, and use tactile helps to assist child make the right sounds)

6. Repetition, repetition, repetition!!! Practice the sounds/ syllables/ words so often that it becomes engrained in their muscle memory!

7. Set your child up for success. Provide opportunities so your child can speak and feel understood, which will further motivate them to continue speaking

8. This method relies HEAVILY on parent involvement. If you want to send your kid to speech twice a week for half an hour, their speech will not improve. You MUST practice at home!!!

What this method is NOT:

• Do not expect that if you get the K-SLP flashcards, your child will magically start talking.
   
• If the SLP is only drilling the flashcards in therapy, that is WRONG!!!
  
• This isn't a quick fix method. There will be a LOT of practice involved! At speech and at home! So if you don't want to put in hours upon hours each week/ month, this isn't the method for you

A Day In Our Shoes

It is hard to understand what someone is going through until you have walked a mile in their shoes. Most people do their best to be their best out in public. And everyone tends to understands that being a special needs parent is very hard.

But to give people a little glimpse into the ups and downs of parenting special needs life, here is one morning's worth:

3:10 am- You are woken up by your SN child waking up, finding you, and won't go back to sleep

4:30 am- You finally get your child back to sleep and desperately want to go back to sleep, but have emails to send to the school about unexplained bruises you found on your child. 

5:00 am- You finish emails and go for a quick shower- it will be your only time; you haven't showered for 3 days, and once your kid wakes up, chaos is non-stop

5:10 am- Your typical child comes and tells you that the SN child just wet the bed. While you are in the shower.

5:15 am- Towel around you,  hair still soapy, you hurry to deal with the bed-wetting. Turns out, it wasn't just wet. *sigh*

5:20 am- Plunk SN child in the bath, hurry and run back to rinse your hair. 

5:25 am- Clean up messes, bathe child, start laundry, scrub floors, bed, walls, and dresser

6:00 am- Children are now bathed and room is cleaned up. Your day may now start!

6:15 am- Make breakfast and have a fun time talking about what we will do that day

6:35 am- Put breakfast dishes in the sink, start packing lunches for school while kids get dressed.

7:00 am- Lunches are packed! You go to check on the kids. The typical child has dressed themselves (doesn't match, but they are dressed!) SN child is crying with her head stuck out of the arm hole of the shirt and both legs jammed into one leg hole of the underwear.

7:15 am- You have now coached the SN child through each individual step of putting on clothes correctly, then praise and hi-five them for working hard. You remember back to when you were trying to stuff their hypotonic arms into clothes as a 3 year old, and know that it is SO much easier now.

7:20 am- Go to brush teeth! SN child decides that their toothbrush is scary and screams and gags through brushing their teeth. You have to pin them down to brush, and feel like a monster for seeing how terrified you made your child. Cue sweating from having to wrestle them to the ground

7:25 am- No bus yet. You sit and read a story while you wait, and your child, now calm though still teary, points out a word they can read. You glow with pride

7:30 am- The bus is finally here! Your SN child gets on the bus and is off to school

7:40 am- You have now been up for about 4 and a half hours, and yesterday didn't yield any sleep either. You look around. Do you spend time with your typical child, run errands, catch up on the mountain of dishes and laundry, or take a nap already?

7:45 am- You decide to take a 20 minute cat nap, so put on a movie for your typical child.

10:00 am- Oops, that 20 minute cat nap turned into a 2 hour nap as your body desperately tries to recover from the last 8 years of sleep deprivation

10:15 am- You apologize to your typical child about not being able to spend time with them, then rush to work on dishes.

10:20 am- Insurance returns your call from yesterday. And no, that $10,000 genetic test will NOT be covered, because you didn't see a genetic counselor (also not covered) first

10:30 am- You text your husband, telling him that there will be a huge bill coming, and that you plan to appeal, and will follow through with that after the next IEP meeting. 

10:35 am- He responds, saying that we will probably never be able to save for retirement, or help with the other child's college or anything because of how expensive the SN child is



So here we are, about 7 hours after you and your child woke up. By now, you are physically exhausted, emotionally drained, financially anxious... And unable to complete the housework you have been planning to do for a week now.

Now, take that morning, and a similar afternoon/ evening, and multiply that by every day of your child's life. Now ad on the knowledge that every day for the rest of your life will probably be that way, since your child won't "leave the nest". THAT is the level of exhaustion we have. 

Don't get me wrong- there are AWESOME moments! When your child hits a long-anticipated milestone, or adds a word to their vocabulary, or you get a great note home from the teacher, you feel like you could fly. 

But a lot of the time, we are so tired we have long since forgotten what it is like to be rested. Or what it is like to have money in the bank. Or to NOT have a headache.

Just a morning in our shoes. 

What Real Love Is

I recently read a little clip that talked about what real love was. That is wasn't just buying chocolates or flowers for someone. That is was really about sending texts to say I love you, pausing a movie to ask about their day, or kissing in the rain. 

I disagreed. While it was very nicely written, this seems like the juvenile infatuation, not real love.

Here is what I feel like real love is:

1. It is the dad that works two jobs for years without end to pay for his child's therapy, and rarely gets to do anything for himself.

2. It is the mom who gets no sleep for years because she is so busy researching her child's condition, advocating, and cramming all the housework into the 3 hours a night that her child will sleep

3. It is the child that adores their special needs sibling and sees them for who they are, regardless of level of ability.

4. It is calmly going in to clean up yet another poop smearing incident

5. It is loving that special needs child regardless. You may never hear "I love you" back, but you still love them

2 Awesome Laws

One of the scariest things for a district to hear is a parent who comes into an IEP meeting and can spout out some law citations! So, here are 2 laws that are fantastic to know!

Reusch vs. Fountain (Getting ESY Services!!!)
I am willing to bet that when you have been denied Extended School Year services, the school told you that you child didn't regress enough over Christmas/ spring break, and said that the child needed to regress in order to qualify for ESY. 

BUT- did you know that there are several other ways that a child can qualify for ESY?

In the Reusch vs Fountain 1994 case in Maryland (practice saying that so you can rattle it off to the IEP team and amaze (or terrify) them!), the ways to qualify a child for ESY were laid out:

1. Regression and recoupment
2. Degree of progress
3. Emerging Skills/ Breakthrough opportunities
4. Interfering Behaviors
5. Nature and/ or severity of disability
6. Special Circumstances 

Endrew vs. Douglas County
In this 2017 case, a boy named Endrew was making very minimal progress at his public school, so his parents pulled him out and placed him in a private school for children with Autism, and sent the bill to the school district.

The district of course, refused to pay it, stating that Endrew DID make progress at their school, however small or slow it was. Endrew's parents argued that their child needed a meaningful education, not a minimal one.

In the end, Endrew won out!!! Which is SUPER exciting for special needs parents!! Our children deserve an education that yields better results than barely making minimal progress!

You can read about Endrew's case HERE.

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!

Drooling

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

Tongues

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! 

Friendliness

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. 

Growling

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!