Monday, April 24, 2017

Why I Advocate

Last week, I was surprised to find a message in my facebook inbox from one of Chelsea's former teachers, saying that they were offended when I wrote in a facebook post that I was dissatisfied with the level of potty training help I had received from that school.

I like this teacher as a person, so am not going to post much of what they said, because I can only imagine the nasty messages they would get, and I have no desire for that to happen. Just a few things they said I wanted to discuss:

  • "It is not an educational necessity to be potty trained"

  • "In my opinion what your asking for could easily be accomplished by homeschooling Chelsea, putting [son] in daycare and make it your full-time job. Then she will meet her potential"

  • "Free and appropriate education has a very different definition to what you are expecting"

  • Next quote not from the same person, and this comment was 3 years ago, but from the DIRECTOR of special education in that district, "If Chelsea needs that many services to make progress, it isn't worth the investment. You need to find a group home for her." (Chelsea was 3)

I really had no interest in arguing when I got the message, and so I simply stated that my child's potential mattered more to me than a teacher's feelings, and that we had a difference of opinion, and left it at that.

But I do want to discuss these topics briefly, because I have gotten similar questions before, usually innocently, (and I NEVER get offended by sincere questions!).

1. "Educational Necessity"- There are so, so, SO many things that are not "educationally" or "academically" necessary that still need included for Chelsea at school. Yes, my child needs to have consistency in going potty. And she need to be able to say "hi" to people. And know how to make a peanut butter jelly sandwich. And know how to purchase an item at the store.

That is part of CHELSEA'S education, and something that will help her lead a successful, happy life. Why is that any less important than knowing academic trivia like cumulus versus stratus cloud formations?

I think life skills are far more important! (and face it, there are plenty of non-special needs students that could take a crash course in life skills too!)

That is the whole basis of an INDIVIDUAL education plan. Each child has unique needs, and goals tailored to them. I have had school personnel tell me that other kids don't have goals like Chelsea's, to which I say "Well, that is good, because they aren't Chelsea"

2. Why Don't You Homeschool? I do in the summers, but Chelsea likes school, and the staff are (almost always) very competent and caring.

I would certainly hope that a special education teacher, OT, SLP, and PT all with master's degrees and 3 decades of experience between them, plus several classroom and therapy aides AND all the resources a school can offer would do a better job than I could!

However, there have been times that I did seriously consider homeschool because I was astonished that a team with all the above qualifications was doing so little to help my daughter progress in her goals.

But right now, I LOVE her team and they are getting her to learn all sorts of new things I wouldn't have thought to teach her! There are really incredible people that work in special education! It isn't a field you just get into for the money.

Additionally, I have no desire to send my son to a mediocre daycare to get constantly sick and sit in front of a brain-cell-sapping television all day, and neglect HIS educational needs (which would need a blog of their own).

3. FAPE- Or Free Appropriate Public Education. Unfortunately in special education, this often means "barely more than minimal progress", rather than a "meaningful education". There is actually a case right now in front of the supreme court about what constitutes an "appropriate education".

I am not looking for babysitting for my kid. I am not just looking for any excuse to have a break from her constant needs. I want her to have an education. A real education! And you bet I will advocate until she gets one, and you bet I will take her side against ANYBODY who says otherwise.

Now, I am not saying treat the school like an enemy. Like I said, I LOVE my daughter's team right now! They are amazing and talented and I know that they love Chelsea!

But I know Chelsea. I know all about her (many) disabilities, and I know how she learns best. So I will bring that to the table, and just as I listen to them, I expect my expertise to be considered by others as well, because I actually know a lot about my kid and how she learns.

4. But Chelsea Needs a Lot...- You think I don't know that? I am well aware that Chelsea needs double or triple the time of other special needs kids. Her disability is far more severe! Of course she needs more help to make progress, and 20 minutes/ week of group speech won't cut it for her!

Chelsea can learn! I know that she can, because she has been able to learn all her colors, shapes, numbers, letters, even words! BUT that comes after a LOT of intense, 1:1 dedicated time and effort.

Yes, I know the school district doesn't like to pay for extra services. Insurance hates to pay for anything. I sure don't like to have about half of all our income going to her therapy, medical, and prescription needs, and my husband and I working 2-3 extra jobs at a time to cover those expenses because insurance, the government, and the school all refuse.

I never really debated whether a child was "worth the investment". If your child breaks their arm, you take them to the doctor and pay to get it fixed. If a child is struggling in math, you send them to a tutor. If your child need speech therapy, you make it work as best you can. It is just what parents are supposed to do.

In Closing:
Every child should have an education that helps them achieve their goals.

I advocate for Chelsea to have a brighter future, because every child deserves a chance.

Wednesday, April 19, 2017

SATB2 Potty Training

Method- Rapid Toilet Training (RTT)

1.    Start with 30 minute intervals (30 minutes on, 5 minutes off potty)

a.    Use FUN and ENGAGING activities

b.    If she goes on the potty, she immediately gets a 5 minute break

2.    After a few successes, move to 25 minutes on the potty, 10 minutes off

3.    20 minutes on, 15 minutes off

4.    Put a chair 2 feet from the potty, and repeat the same schedule as above, and unless Chelsea doesn’t go to the potty when she needs to pee, move the chair 2 feet further away with each session, until 20 feet away, and then remove

5.    Change reinforcers and start fading prizes- 3 times/ day for a prize, 5-10 times for a prize, etc.

6.    Use other potties

To-Do Prior to Starting

       Make a chart to track progress (this is for your sanity, not a reward chart for your child)- time, activity, notes, potty

       Write up a social story with pictures of Chelsea

       Gather potty books to read

       Check out or purchase potty videos (Elmo, Potty Time, etc)

       Put together a box of 50-100 activities (some can be multiples of the same (puzzles, different princess magnetic dress-ups, stickers and paper, coloring books) 

       Plan/ prep all the activities

       Prize bucket (little prizes for pee, big prizes for poop- underwear, treats, dress-up from yard sales, necklaces, dollar store stuff. Totally worth it to me to drop $60 to potty train my kid!)

       Make a clean-up bucket (paper towels, cleaner, extra outfits for you and kid, towels)

       Get salty snacks and drinks!
       Pre-make meals and snacks

       Ship off other kids if possible so you can focus totally on potty training

Several of Chelsea's prizes were yard
sale outfits. She is a little fashionista!


v  Give as much of whatever Chelsea likes to drink, plus salty snacks to help her stay thirsty (aim for 4-6 ounces an hour, but don’t force it)

v  When Chelsea goes in the potty, give LOTS of praise and prizes

v  If Chelsea goes potty anywhere else, clean her up quickly and silently, keep a neutral reaction

v  If she starts going, put her on the potty quick before she finishes! If she finishes on the potty (even a drop counts!) it counts as a success, and show her excitedly how she CAN go potty

v  Naked waist down to watch that rear end for any deposits!

v  Pour warm water over bum while she is sitting. It helps with the sensation of peeing

v  AVOID screen time as much as possible!!! A few reasons why: 1) High amounts of TV coorelate to more complex partial seizure activity in brain, which also leads to weakened bladder/ bowel control and 2) When Chelsea is focused on the TV or iPad, she doesn’t focus on her body signals, and won’t even realize she is going. But after we had some successes, I would give her short videos (7ish minute episodes) for when she requested potty, or tried to get on. She is HIGHLY motivated by iPad, so this was a great reward for her!

Chelsea teaching Minnie Mouse how to go potty and reading

Activities (rotate every 15 minutes, even if changing the puzzle or magnetic princess set)

1.    Build a straw, blow bubbles in drink

2.    Read potty books

3.    Paint nails (and blow to dry them!)

4.    Fancy hairdos

5.    Magnetic princesses

6.    Other books

7.    Blow up balloons

8.    Melissa and Doug re-useable sticker scenes

9.    Sing princess songs

10. Hanger clothespin ABC game

11. Blow on party blower thing

12. Scratch off drawings

13. SHORT Minnie Mouse episode

14. Dress-up barbies

15. Thread beads to make bracelets
Sensory bin puzzle time!

16. Craft stick name match

17. Silly String Sensory Play

18. Coloring books- color then cut up

19. Work on flash cards

20. Read target sight words

21. Expandable tube- telephone, crown, make letters, marble run, balloon catcher, basketball hoop

22. Princess Memory

23. Dance party to celebrate success

24. Lights off, shine flashlight on sight words

25. Puzzles

26. Play guess what I am thinking

27. Talk about pictures- what are they doing, who is this, which one is doing ____

28. Sensory bin puzzles (hide pieces in bin)

29. Bubbles

30. Bath (while Mommy cleans the bathroom)

31. Painting in a bag
Paint in a bag, just toss when done!

32. Stickers on paper

33. Play Bingo

34. Play Candyland or other board games

35. Catch and throw balloons (easier to track and harder to fall in the potty)

36. Velcro name, practice writing name, trace letters

37. Call Grandma to report progress

38. Get the mail (during a break)

39. Lacing boards

40. Princesses go potty (work on “___ go potty” with toy flushing potty)

41. Call Daddy

Chelsea was on a big princess puzzle kicki

How Chelsea Did

Day 1- Chelsea was actually a little sick the first day, but we couldn’t put potty training off- I had already arranged for my husband and son to take a long weekend out of state. That day, she peed 8 times, half in the potty by the time she finished, and the rest on the floor. She also peed in her activity box, so learn from me and keep it higher up than the floor.

Day 2- Chelsea did lots more standing today (yesterday it was mostly sitting on the potty), and starting moving to the potty when she was about to start. She peed 16 times (5 on floor, 11 in potty), and pooped once. We learned that tying her shirt tight makes her feel what is happening better, and keeps my eyes right on that her bum, to watch for any accidental deposits on the floor. We also learned that pouring warm water over her while she sat on the potty helped with the sensation of peeing. She also learned that if she waited for the 1 minute that I had to go potty, she could go on the floor without being snatched up and put on the potty (which scares her a little). She also had her first poop on the potty! She started going on the floor, but I snatched her up in the nick of time so that it fell into the potty.

Day 3- We still stayed in the bathroom doing a puzzle marathon today, but did venture outside a couple times for her 10-15 minute breaks, to get the mail, or go down the slide a few times. Her potty tracking was 6 times peeing (4 in potty, 2 floor), and pooped twice (she requested once and made it, the other time missed her signal and it landed on the floor). She wasn’t thirsty at all today, and I had HUGE amounts of anxiety, thinking that she would pee any second we left the bathroom for those quick breaks. I was totally freaking out that she went about 10 fewer times than yesterday.

Day 4- Only 5 times total today, but she went in the potty every time except right before bed. She even woke up dry that morning, and went right to the potty! I took her every 10 minutes to try, and after about 2 hours, would turn on the faucet and pour water on her, which helped. Right before bed, we were playing and I forgot to take her to try, so she went in her undies. My bad.
A brief outdoor excursion to our apt park

Day 5- Woke up wet, and had 4 accidents, and just 2 successes, still taking her every 10-15 minutes (which, by the way, still feels like you live in the bathroom) Several of the accidents happened about a minute after I took her off the potty. One of the times she went in the potty, she had said potty, then screamed hysterically while she peed, and I had to hold her on the potty until she was done. For several of the accidents, she would wait until I had to go, then pee in the 30 seconds that I was using the toilet. One of the others, she peed on the slide outside. Additionally, her little brother came back home, and had multiple accidents of his own after seeing that Chelsea didn’t get in trouble for HER accidents. Seriously discouraging day, and I cried for about an hour, convinced that my child would never learn to use the potty, and wondered if I was just wasting my time trying to teach her.

Day 6- Despite her waking up poopy, I took her potty every 15 minutes with religious dedication, and had a determinedly positive attitude because of the horrible day before. It paid off! She went potty 10 times, and 8 times made it into the potty, with just 2 accidents, but she signed “accident” each time, and realized that it was supposed to go in the potty! I noticed that she would act scared of the potty right before she went. She got her average of sitting on the potty down to 3-5 minutes before she went.

Day 7- We aren’t pouring water as much, but turning the faucet on still helps, so we do that. The trickling water helps her remember to potty, and I noticed her focusing right before she peed in the potty! She IS learning! Today, she had 3 accidents (one was my fault for not taking her- I struck up a conversation with an actual adult, and missed my timer), but she also had 8 successes!!! Hooray! She also told me about her accidents after she had them, which is still progress- she is noticing and reporting, and trying to get to the potty most of the time!!!

Day 8- All 11 attempts were successes! More focusing, and she even went right away a few times!

Later- She still took a LONG time to get successful with pooping in the potty consistently. It wasn’t until we moved and had a great school team that helped her at school that she finally got the pooping part. Having a great special ed teacher makes all the difference!!!

Sunday, April 9, 2017

10 Favorite Blogs

So far, the 10 most popular posts from this SATB2 blog:

10. Potty Training Activities! For this blog, I listed a bunch of the activities I could do while Chelsea was sitting on the potty, because the potty training method we used was INTENSE! We pretty much lived in the bathroom for 3 days, plus 2 weeks at home.

9. SATB2 School Prep! At the beginning of every school year, I put together folders for each of Chelsea's team members, with pages that give an overview of each of her disabilities, and a cute page that is "All About Chelsea". I have found them very helpful with the school! I also had a second school prep page to finish the folders

8. Preschool Themes!  The link is for the medieval theme I did last summer with my kids. With both of them in school part time or full time, I don't so these much during the school year. But this coming summer, we will be doing homeschool every day!!!

7. SATB2 FAQ! This blog answers some of the most common questions people have about SATB2, like "What medical problems usually accompany this syndrome?"

6. Busy Bags: Some of the best creations!!! I use these at least once a week at church, and on car trips, during visits... All the time! I make mine specifically with Chelsea in mind, so she can learn to button things, develop fine motor, etc. I also did a Second Busy Bag Blog with more ideas, and I am NOT crafty at all- I stole these ideas from Pinterest, and if I can make it, ANYBODY can!

5. SATB2 Study in English: The geneticist studying SATB2 put together an awesome study that outlines a way to remember what SATB2 entails with a clever acronym, what tests should be done/ therapies to be tried, and a bit about different parts of the study. I deciphered what I could, but don't have a doctorate in genetics or anything cool like that!

4. Abuse Prevention: One thing that scares me more than anything else is knowing that Chelsea is a prime target for abuse- she may not be aware of what is going on, she can't tell me about it, and hits many risk factors. So I took it upon myself to get abuse prevention to know what to watch for and what to teach Chelsea.

3. Best Therapy Toys: I still have a wish list on Amazon about a mile long, but some of these are- sensory tunnel, sensory bins, gross motor toys, building materials...

2. SATB2 Meeting with the Geneticist: These are some of the questions I asked when Chelsea was first diagnosed with SATB2 Associated Syndrome, and some of the info I got from her geneticist (NOT the same one that did the studies!)Update on this, there are some nutritional needs for SATB2 kids, which I blogged about HERE.

1. Common Features of SATB2 Associated Syndrome: The more I read about other SATB2 kids, it astounds me how similar they can be! Many of these kids are super skinny with HUGE appetites, or clap their hands hard to get sensory feedback, and a number of other things! This blog outlines some of the biggest ones, like dental abnormalities and intellectual impairment.

Sunday, April 2, 2017

Light It Up Blue

Today was Autism Awareness Day, when people are encouraged to wear blue to show support for/ raise awareness about Autism.

I thought this was an awesome thing- I loved that people would show their love for those with Autism.

But then on my newsfeed, I started seeing several negative posts about how things about Autism Awareness Day were horribly offensive.

Such as: "blue symbolizes depression, and having a child with autism isn't something to cry about. " or "Puzzle pieces are derogatory- they mean I don't fit anywhere in society" or "When people think of autism, they think it only affects boys, and that is offensive to the many women that struggle with it"

Now, I do not have a child officially diagnosed with Autism. She has many of the traits, but a different diagnosis. I am not an expert in Autism, nor do I pretend to be.

However, I do have many friends and family members that DO have Autism, and that I love very much.

I will gladly wear blue for them.

I participate in Autism activities for them.

I do these things to show my support for them.

I am confused about why there are so many articles shaming the people that are genuinely trying to show their support for people with Autism.

First of all, the vast majority of people are uncomfortable when they encounter unfamiliar things, special needs included.

I certainly was before Chelsea, and I still am when I encounter a person with a disability I have never encountered.

But as a parent to a child with special needs, I would much, much, MUCH rather a person try to show their love and support and make a few mistakes than do nothing.

Parenting a special needs child can be a difficult and lonely road. We need support!

Of course people will make mistakes- no one is perfect! I have two stories that come to mind:

In my senior year of high school, I was out prom dress shopping, and while trying on some dresses, saw a girl come partially into view, also trying on dresses. I also noted that her whole arm, finger tip to shoulder, was in a cast, and wondering if she had broken it doing some kind of sport, asked, "Hey, what did you do that you get such a big cast?"

She turned around, and I saw that every inch of her was covered- face, neck, feet, chest, everything. "I have a skin condition" was her response, and then she walked away, leaving me feeling about 2 centimeters tall and wanting to crawl under a rock!

The second story happened after I had Chelsea and knew about her diagnoses. I was at the grocery store, loading my groceries from the cart into my car, and was nearly done. I saw a man park his car close by, then carry out a boy, maybe 12 years old, with noise cancelling headphones on, who was stimming and clearly had some special needs (my guess was Autism, but who wants an unqualified diagnostician, right?)

Remembering how I wished people would have "normal" conversations with me, I greeted him, joked about the weather, and as he drew level with me, I heard him ask, "Hey, can I take your car?" Laughing, I said no- he has one already, assuming it was his way of making a joke.

Nope- I had misheard, and he had been asking for my now empty shopping cart so he could set his son into the basket, and the dad got this shocked look on his face and said, "Oh, okay..." and slowly walked away.

I caught on when he was about 30 feet away, loading his son into an abandoned cart. Boy, did I feel like the most insensitive person in the universe!!!!

I tell these stories to show that most people really aren't trying to be rude. I would never knowingly insult or ignore a person with special needs, or their parents doing their best! But mistakes will happen, accidents happen.

So perhaps instead of shouting about how you don't get support, then about how offended you are that someone would dare to wear blue to try and support a person, you could thank them for their love, and kindly explain why you are wearing red instead, or using a different symbol.

I believe that most people are kind, and want to show support, but sometimes just don't know how to.

Many people with special needs are reserved and don't want to share, and that is great! Some people are very outgoing and happy to share, and that is great too!

Everyone is different, and just as our personalities are different, so are our ways of showing support.
Maybe I didn't show support in the exact way you would like, but I am trying to show that I love you, and I am trying to understand. It is a work in progress, thank you for being patient while we all learn together.