Thursday, March 15, 2018


Being a parent, but a special needs parent in particular, means that you have to convince/ persuade/ bribe your children in order to get anything done in a timely manner. 

With Chelsea, there are several things that she HATES to do:
  1. Take her vitamins
  2. Help clean
  3. Practice her speech
I have had to find creative ways of getting Chelsea to do what I need her to. For example, with her vitamins, Chelsea has several vitamins/ medications that she needs daily or twice daily. Hiding them in food does not work. Ever. She ALWAYS finds it. So, I developed other methods that work about 80-90% of the time:

  • Let her choose a princess dolly to hold the vitamin and put it in her mouth
  • Start a short video (usually Super Why, Signing Time, or Max and Ruby), then pause after 1-2 minutes and say "Oh, I forgot! First vitamins, then video!" She is so transfixed on the video that she will eat anything
  • Have a princess dress/ crown/ shoes, and tell her that once she eats the vitamin, she will change into a princess. Then take her to the mirror to admire herself
  • Make everyone take one. Like multi-vitamins at breakfast, we take turns- brother takes one, Mommy takes one, then it is Chelsea's turn. If she is grumpy, I will let her feed me mine, then I get to give her one.
  • Reverse psychology! I love that this still works on her. I will say, "Whatever you do, DO NOT eat this! It is really ______" and make up something that she loves. She will start giggling and eat it

With cleaning, I have rules that she has to make her bed in the morning (mostly she arranges her stuffed animals and tries to spread her blanket. It is a work in progress), and help with "power hour" around dinner time. She is also in charge of helping tidy up the room she shares with her brother before she goes to bed. 

  • Work it into a routine! She has a great morning routine that she puts happy faces up on a chart for each time she completes a task.
  • Use a first/ then chart. We had to teach her how to use this, and start small. But now she is at the point where she knows if she competes X, she gets Y
  • Practice counting. I will tell her that after she picks up 10 things, I will pick up ten. She will sulk and pout, but loves completing her turn and telling me which items to pick up and put away
  • Make her dolly "clean up", where she makes the dolly pick up each item and put it away. I use hand over hand with her, and she likes being "in charge" of making her dolly work
  • Pretend. We pretend to be Cinderella cleaning up, or pirates swabbing the deck, etc.
  • Put on music she likes, and turn it off when she stops cleaning

Practicing speech is a big deal! She has plateaued lately, since she has been focusing on learning to read, but we still do our practice diligently. If nothing else, she will know that we expect her to talk, even if she isn't progressing right now. Some ways to make her work:
  • Do pivot phrase play-based therapy!. Nancy Kaufman was a pro at this, like "Go ni-night, Elsa" and put Elsa in bed, then "Go ni-night Minnie Mouse", multiply by 15! Choose a pivot phrase you want your child to work on "I want" or "More ___ please"
  • Play dumb. When Chelsea isn't speaking as well as she can, I act like I have no idea what she wants, and say "What? Say it again, please!" until she gets it right. She gets frustrated by my "incompetence", but will say her words over and over, because she knows I won't give her what she wants until she does.
  • Have her be the teacher. Just like with making her dolly clean, Chelsea likes being in charge and feeling powerful. Have her teach me to say a word over and over. She thinks it is HILARIOUS when I get it wrong, but I have to be careful not to make it too silly, or I can't recover her to work. 

Thursday, March 8, 2018

I Know How You Feel

One of the things that just about EVERY special needs parent has heard from well-meaning people is "I know how you feel." I am sure that they say this to try and sympathize with what we are facing, because it is very, very difficult some days. BUT, it is really, really annoying to hear. Because most people have no idea how we feel. 

YOU don't know
Let me give a few examples from those who do NOT know how a special needs parent feels:

1. My cousin has Autism, so I know how you feel

2. I have kids with disabilities that go to my school/ church.

3. I rode a bus with a special needs kid one year. I know how you feel (Real example, yall)

4. I watched a show about that disability! I know all about it now.

5. Oh, your child has seizures? I read this article one time, and I think they would be healed if you _______.

Now, most people are wise enough to know that these examples do not give a person any amount of credibility. For those who are uncertain still, let me tell you how these came across to me. 

1. "My cousin has Autism, I know how you feel." Okay, so you have probably seen the meltdowns and get a little part of that. But have you worried about how to pay for their care because they will never be able to live on their own? How about changing their diaper when they are 18? Have you laid awake night after night scared that they could be abused and won't be able to tell you? 

2 and 3. "Kids with disabilities go to my school/ church." and "I rode a bus with a special needs kid." Well, good for you. That still does not mean anything. I have seen people in wheelchairs, but I don't have any idea on how difficult it is to navigate public places without the use of my legs. No idea at all.

4 and 5. "I saw a show/ read an article about seizures, so I know." Well, thank heavens I have you with your internet degree of advanced knowledge!!! I don't know what I would do without you. Really, thanks for that 5 minutes of googling my kid's symptoms. Surely, I have never spent countless hours on countless nights, desperately searching the internet for information about my child's 10 sub-diagnoses.

Monday, February 26, 2018

SATB2 Siblings

I am constantly impressed by Chelsea. She works so hard, since everything is so difficult for her. She goes to speech, occupational, and physical therapies, has 7-8 hours of school 5 times a week, and then comes home only to do practice what she learned and have hand over hand done for life skills- dressing, hand washing, taking a bath, etc. 

But I talk about that all the time. Today, I want to say how impressed I am by siblings of special needs kids. To those sweet spirits who get dragged around to waiting rooms and entertain themselves while their mom takes notes on therapy, or talks to yet another doctor. 

My typically developing son amazes me. Not because everything comes easy for him, but because he has stepped so willingly into the role of personal aide that I never thought about him needing to take on. 

To give some examples:

1. When Ryan was 3, I asked him to watch Chelsea and keep her safe while I had a shower. AND HE DID.

2. Even before he was 2 years old, he took on the role of translator when people couldn't understand Chelsea. I guess all that sitting in on speech therapy helped his verbal abilities!

3. He is constantly explaining things to her step by step. By 3 years old, I would hear him saying, "Okay, Chelsea, we need to get dressed. So what do we do first? Right! Let's choose clothes. Don't pinch your fingers in the dresser drawer."

4. I was very sick when Ryan was 4 and Chelsea 6, and he made her a sandwich with cottage cheese and applesauce as sides, then entertained her for an hour.

5. He plays on her level, and teaches patiently (most of the time, they ARE still siblings, after all!). Over and over and over. 

6. He treats her just like anyone else! I love this one, since so many people will flip on the "poor baby, let me give you everything you want because you are disadvantaged" mode. Ryan will get mad at her for annoying him, and treats her as an equal, not someone to be pitied.

7. He ends up playing by himself a lot, and understands that while Mom and Dad give him as much attention as they can, but they need to help Chelsea a great deal of the time. 

8. After I measure out her seizure medication, Ryan is sometimes the ONLY one who can administer it to Chelsea without her freaking out. And he will!

9. He is very accepting of others' differences, particularly speech impairments. I have heard him say things like, "That's okay, my sister doesn't talk either." Besides, he talks enough for 3 kids, so it works out. 

10. He is fiercely protective of Chelsea. When Chelsea was getting teased by a boy 3 years older than Ryan, Ryan jumped in and told the boy to leave his sister alone, or he would punch him. Then he took Chelsea's hand to go play somewhere else.

11. He still does all the typical brotherly duties. Like teaching her to say "Pick nose" with actions included. 

Sunday, February 18, 2018

2017 Conference All About SATB2

Just about every parent who has a child with SATB2 Associated Syndrome knows Dr. Z. He is the geneticist who is researching this disorder, and made the official SATB2 website, which is HERE.

The website has the best, most accurate information available. At the 2017 conference, Dr. Z gave the most popular presentation, and it was all about answering common SATB2 questions. 


Quick history lesson: The first ever diagnosed case was made by Dr. Glass in 1989. This is why some geneticists call it Glass Syndrome. The SATB2 gene wasn't discovered until 2003. In 2007, the first individual with a mutated SATB2 gene was found.

2014 was when the ball really started rolling. The function of the SATB2 gene was being studied in mice, and the 1st paper on this syndrome was published. 2015 was when Dr. Z got involved. A mom of an affected child emailed him asking for his help.

In 2016/ 2017, we got the official website launched, a UK study was published, and SAS was added to a list of officially recognized rare diseases. We also had our conference in August of 2017, at a hospital in Little Rock, Arkansas.

As of the conference, we had roughly 150 diagnosed people in the world. Which makes you think that the incident rate would be extremely low, right? The assumption was about 1 in 50 million or something.

BUT- this is a new diagnosis, so those who got testing done a couple decades ago wouldn't be diagnosed, and many people with ID (intellectual disability) don't get diagnosed, or are misdiagnosed. Because genetic testing can be very expensive!

But short answer, Dr. Z estimated it is 1/ 33,000.

  • Not sure why it is happening, and it seems to be evenly distributed by population
  • This syndrome is de novo, but it could happen again
  • There is a pair of siblings with parents with normal testing
  • Another case has a mutation in a dad with very low levels
  • Another case is a pair of siblings with a duplication not found in the parents
  • It is estimated at a 2-3% likelihood of having another SAS child 

MAIN FEATURES: Current as of August 2017
41% female
59% male

Known cases, ages are 0-34, mean of 9 years old

Commonly presents with:
  • Developmental and speech delays? 100%
  • Mean IQ is 46 (32-53)
  • Commonly has a broad thumb and big toe
  • Brain differences (abnormal EEG, but no clinical seizures)
  • Sleep Difficulties
  • Fractures
  • Balance issues
  • Low muscle tone

Monday, February 12, 2018

The "Everything" Binder

I keep copies of all Chelsea's files in binders organized by school year, blogged about it HERE. But, I found it really burdensome to haul around several different binders, so made a "Chelsea Binder" that I can bring to any appointment and have exactly what I need in there. 

In a Nutshell
Most doctors/ therapists want the same thing, so I include COPIES (never originals!) of the following:
  • Her birth certificate 
  • Her social security card
  • Her most current IEP
  • Her most recent OT/ PT/ speech evaluations
  • Most recent EEG results, DEXA scans, etc. (any evaluation you get done, but only the most recent)

I also include:
  • Business card organizer with all the contact information for all doctors, therapists, special ed lawyers/ advocates,  schools, etc!
  • A chart of all her previous schools attended
  • A chart of all her diagnoses, date of diagnosis, and where/ who diagnosed her with what
  • A chart of previous tests/ evaluations
  • A chart of hospital visits, therapy centers, etc.
  • Samples of her artwork by year
  • Samples of school work by year

Okay, that is a lot! Let me break it down a little more:

The EssentialsGet a COPY of your child's birth certificate and social security card. If you want to apply for Medicaid, Social Security or anything like that, they will want those documents. Or if you call to update information, they want the social security number RIGHT THEN, and if you don't have it, they put you back on hold for who knows how long. 

I sectioned out Chelsea's IEP for two reasons. First, it is a 32 page document, and there is no way I would ever be able to fit 32 pages into one sheet protector. 

Second, it makes it easier to quickly locate specific goals or bits of the IEP I need to reference. I put a sticky note on the front of each section as a miniature "table of contents". 

Evaluations/ Tests
Again, only put in the most recent copies. If you have had a neuropsychological evaluation done every 3 years, only put in the one completed most recently because it is the most up to date.

This section could include things like:
  • Occupational therapy evaluations
  • Speech therapy evaluations
  • Physical therapy evaluations
  • DEXA scan results
  • EEG or MRI scan results
  • Medication- what brand of what med, dosage, when administered
  • Genetic lab results
  • Blood panels 
  • Specialist reports (neuro/ neuropsych/ endocrinologist/ craniofacial)
I really love Calvin and Hobbes!

Remembering Everyone
With special needs parenting, you meet a LOT of professionals. Doctors, therapists, advocates, teachers, aides, lawyers, specialists, the list goes on and on. 

I was always kicking myself, trying to remember who I talked to and when and how to contact them again. Now, I just ask for a business card, and stick it into the business card organizer I got from Walmart. If I need to, I can write on the back where I met them or any other notes. 

I love, love, LOVE charts. It makes everything so easily accessible! Some of the charts I use:

1. A School Chart 
School Name       Address           Phone        Dates Attended

2. Diagnosis Chart
Diagnosis         Date Diagnosed       Who Diagnosed Her 

3. Previous Tests/ Evaluations (list them all!)
Test         Date         Doctor           Results
EEG#1    01/01        Dr. Brain       Complex partial seizures
DEXA      04/01        Dr. Bones      Osteopenia 
EEG #2   01/04        Dr. Brain       Same results as before

4. Facilities Used Chart (hospitals, therapy centers, etc)
Facility Name      When Visited      Purpose
Big Hospital         02/01                  Dental extraction and sedation
Therapy Center    01/01-01/06       Speech and Occupational Therapy 

Samples to See Progress
I love seeing how much Chelsea has progressed and developed over the years! I started pulling a sample of her artwork and school work each year so I can see how far she has come. It makes me feel like all of our hard work has paid off. I include samples of her handwriting in the school work section. 

Monday, February 5, 2018

Benefits of Adaptive Gymnastics

One of the things I have done with Chelsea since she was a year old is take her to adaptive (or "special needs")gymnastics classes. It is SO GOOD for her development. Here are some reasons why:

1. Gymnastics forces the brain to create new and adaptable motor plans. You do things in gymnastics that you normally wouldn't, so the brain is working extra hard to develop ways to do what you are telling it to.

2. Lots of crossing midline here! This is something that they really try to emphasize in occupational therapy, and it comes naturally in gymnastics. Plenty of placing feet and hands at or across midline as you work on vault, beam, bars, floor, etc. It also is a HUGE help with balance, something Chelsea REALLY struggled with, but does much better now.

3. The trampoline is great is so many ways for your body! From teaching the basics of jumping to forcing the brain to think about how to connect two different jumps (motor planning, two-step directions, coordinating the body to absorb the impact of one jump and transition to the next)

4.  Chelsea has to follow directions from her coach, and really think about what she is told. Instructions aren't simple "go get your shoes" it is more like "Put your right foot here, left hand here, and squeeze your muscles"

5. Grip strength! Most people know that gymnasts are STRONG! Their hands are strong because they are constantly hanging on bars, gripping the bars and simultaneously holding up their body weight, etc. 

6. Shoulder/ arm/ wrist strength! The majority of adults can't do a handstand, even against a wall. One of the reasons is that is a motor plan you never learned. Another reason is that most lack the shoulder and wrist strength needed. You know what else shoulder, arm, wrist, and grip strength helps? Handwriting!!!! 

7. Core strength! Every event in gymnastics- floor, bars, vault, beam, and trampoline, requires an enormous amount of core strength. Hands up, whose child had an OT that wants to work on core strength? With SATB2, I would guess at least 75-90% of us! It is soo necessary for everything we do, even when we don't realize we are using our core. 

8. IT IS SO MUCH FUN!!!!! At the gym Chelsea goes to, they do princess play dates where princesses come visit, summer camps when the last day is a carnival with balloons and cotton candy and bounce houses... And gymnastics by itself if super, super fun! Chelsea LOVES going each time! 

Wednesday, January 24, 2018

Nancy Kaufman Workshop: Part 4

The final part of the Nancy Kaufman workshop- Scripting Formal Language in the Home Setting! Basically, it is just a fancy way of saying "Getting your kid to talk more at home".

Earlier Parts of the Workshop

What is Scripting?
Just like in theatre when an actor reads a script to know what lines to say, when you "script" at home, you are teaching your child what to say. 

Child: Uh-uh!
Mom: Do you want me to take off your coat?
Child: *nods*
Mom: Say "yes" 
Child: Uh
Mom: *using visual cues* Eeeeeee-es
Child: Es
Mom: Good job! You said yes! *helps take coat off*

If you ask your child a questions, expect an answer! Model the answer, or provide the answer and prompt their speech, but they need to learn that if they are asked something, they need to respond. 

Make it more effective for your child to speak rather than gesture/ be non-verbal. Use gestures as an indication that your child wants to communicate, and help them communicate effectively through speech!

Give the answer
If you know your child struggles finding the right word, GIVE IT TO THEM in the question you ask! That way, they don't have to think about which word to say and then focus on how to say it. They can just focus on saying the word.

Mom: Do you want to eat?
Child: Eee!
Mom: Yes, let's go eeee-t. Your turn! Say eeee-t
Child: Eeee- *mom visually prompts T* eat!

What if we can't reinforce?
Well, what if you can't reinforce what they want? If they are asking for something crazy, find a substitute. No, we aren't going to Disneyland right now, but we could play with some of your toys. 

Reinforce later by teaching "wait". Ideally, we reinforce right away. But we can also teach "wait" once the child is established in knowing that they WILL be reinforced for their efforts. Just make sure to keep up on your promises!

Forget Filler Words
Grammar will come later. Right now, focus on S-V-O speech (Subject- Verb- Object) to get the basics of speech. So instead of "The boy is riding his bicycle", say "Boy ride bike". Only use the main parts of the sentence.

An AWESOME way to work on this is to use action pictures! They are all over- magazines, kid books, your SLP can give you some, etc. You could also get pictures of your child doing activities, which is very reinforcing to your child (and you can get them to practice saying the name lots of times!)

Pivot Phrases
Here we are with those awesome pivot phrases again! Using the S-V-O approach, we can work on:

____ go down (on a slide)
____ go ni-night (with a bed)
____ go potty (play potty and characters)
____ go car (use a toy car)

And if you want to get crazy and technical, remember that some syllables are pivot syllables!!! Like "ny":


Real-Life Speech
Use pivot phrases as often as possible in real life to get your child to use functional speech!

Get on ____ (getting ready in the morning)
Put on ____ (setting the table) 
Take off ____ (going to bed at night)
Put in _____ (put things into shopping cart)
Get out _____ (getting groceries out of bags)

During Games
What kid doesn't love to play games? You can work on saying "My turn" or "Your turn" and things like "I want blue"

At the park, work on "go up" on a ladder and "push me" (on the swing, not to the ground, haha). Or "go down" for the slide, and "play with me". 

There are so many opportunities to speak! Try and get your child talking as much as possible, because repetitions= progress for our sweet apraxic kids!