Monday, January 15, 2018

Nancy Kaufman Workshop: Part 2

I already wrote Part 1: The Elements of Successful CAS Therapy, and this is Part 2: 5 Lists of Words Your Child Should Learn. Meaning, these 5 lists are the highest priority to teach to your child with Childhood Apraxia of Speech.

The 5 Lists of Words to Teach
1. Syllable Shape Words
2. "Power Words" (manding)
3. Familiar Nouns
4. Favorites
5. High-Frequency Words

List 1: Syllable Shape Words
These are words that "train" the child's mouth to move in a variety of ways, setting the child a firm foundation of sounds and motor plans for future speech. They vary in complexity and this is probably the word list your SLP targets most often. 

C means a consonant, V means vowel

CVCV words: mama, dada, papa
CVC words: hat, mop, dad
VCV words: oboe, okay
CV1CV2 words: mommy, puppy
CV words: hi, no, bye, me
VC words: up, out, in, on
C1V1C2V2 words: happy, tummy, pony
CVCVCV words: banana, tomato

*Remember: Some kids, those that are very concrete learners, might assume that if you start teaching CVCV words first, may repeat everything. So mama is fine, but then you get into "up up" or "cat cat". So start with non-duplicating syllables. 

Some sounds are "gross motor speech" that use the whole mouth, like the muh, buh, puh sounds.

Some sounds are "fine motor speech" like the Rrr sound, or the Th sound. 

Teach gross motor first, unless your child is starting with some "fine motor" sounds already in their repertoire. 

Pictures are very useful because they have concrete meaning without you having to hunt for objects all the time, but DON'T USE JUST PICTURES!!! That will get very boring!! Mix it up and make it fun!

Also, don't overemphasize the final consonant, or the child will do the same. So say "boa-t" instead of "Boa-TUH"

Perfect the first CV in a word before adding the ending sound. If a child can say "boo-", people are much more likely to guess "boot" than if the child can only say "b-"

Every SLP has their own set of visual cues, and kids can get confused if their school and private SLPs and parents all use different signals. So get everybody on the same page! 

Use approximations for difficult sounds until the child can vocalize the correct sounds. Work up from what the child CAN say. This is called "Backwards chaining". The backs of the K-SLP cards give examples, but are JUST suggestions! 

So, "Robert" could be taught as "Wah-buh-t" starting out. 

If your child's name is very difficult, give them a nickname! The "thew" in Matthew is a very complex sound, so just let him call himself Matt until he is a better talker. 

If your child has a very long name (3 syllables or more), drop the hardest syllable

List 2: "Power Words" or Functional Single-Word Requests or "Manding"

These are words that are functional and can manipulate the environment. They give your child control! This is VERY empowering to a child! 

Open          Up             Here          There          Come
Down          On            Mama        Off               This
Yes             Dada         In               No              Watch
That            Go             Look          Don't           Out

REMEMBER: This is where vowel accuracy is SO important! If "out" sounds like "at", no one will understand, and your child will become frustrated that his/ her attempts at manipulating the environment go unnoticed. 

ALWAYS model correct speech! A conversation with your child may look sound like this:

Child: *points to crayons*
Parent: Do you want to draw?
Child: *nods*
Parent: Oh, I see, you want to ____
Child: Daw
Parent: Yes! You want to DRAW! *gives crayons and paper*

In this scenario, the child didn't get what he/ she wanted until they vocalized, and the parent rewarded verbal attempts immediately while still correctly modeling proper speech. 

List 3: Familiar Nouns

In this list, teach nouns that are familiar to your child. Apple, bubbles, shoes, water, bike, etc. 

Pair these nouns with SPECIFIC verbs. Using "want" all the time is too general, and you want a wide vocabulary. So the phrases become:
  • "Blow bubbles"
  • "Drink water"
  • "Put on shoes"
  • "Eat apple"
  • "Ride bike"

ASL Tip: If a child does not have a specific sign for something, they will often "scroll" through general signs (want, please, more, all done) often taught early, hoping to have their need met. 

Scenario: A child wants a cookie. 

Child: *signs want*
Parent: You want something?
Child: *nods and repeats sign*
Parent: Do you want a drink? Bath? Chalk? Potty?
Child: *shakes head, signs want again*
Parent: Do you want to play outside?
Child: *shakes head, increasingly frustrated. Signs want please*
Parent: You are saying want please, but I don't know what you want. 

Now compare that against the same scenario where the child wants a cookie, but was taught the sign.

Child: *signs cookie*
Parent: Oh, you want a cookie! Say "cookie"
Child: Too-tie
Parent: Good job! Here is your cookie *gives cookie*

You want your child to be rewarded for speaking! Make it easier to get their needs met by speaking than by any other method, and the child will do their best to speak.

Very often when a child learns a sign then loses it later, it is because it didn't have concrete meaning, and didn't consistently get the child what they wanted.

List 4: Favorites

This is my favorite to teach, because Chelsea gets SO excited about being able to request her favorites, or tell people about what she likes.

Make lists of your child's favorite items/ activities, and teach those words. Likely, your child will be highly motivated to learn these words, because it gets them a highly-preferred item. Simplify the words if you need to, but make sure your child can say them!

Your child's name is a top priority here!

Categories of favorites may include:
  • Foods
  • Drinks
  • Toys
  • Activities
  • Places
  • People
  • Pets
When your child uses these words, give them that thing! You are teaching them to communicate, and so they need high levels of positive reinforcement!!! If you require them to talk without a reward, there is no reinforcement, and they will stop trying to talk, since it doesn't get them what they want. 

List 5: High Frequency Words

These are words used very often that your child will be expected to use correctly. Words include:

Please          Thank you          See          Get
Again            Awesome           Bye          More
Have             Want                  Hi             Help

If your child generalizes "please", they will add it onto everything, and that usually leads to slurring words together. So "jump please" becomes "umpees"

Other high-frequency words are descriptive words. Colors, numbers, sizes, shapes, etc.

There are also linking words (and, as, if, or, but) for correct grammer. Teach these if your child is ready for them, otherwise, omit them completely and focus on functional speech. 

Friday, January 12, 2018

Nancy Kaufman Workshop: Part 1

In Houston where we live, there is a school that specializes in Childhood Apraxia of Speech. Nancy Kaufman is a consultant there, and usually comes out once a year to give a workshop. All the speech therapists that work there are also trained by her, often at her clinic in Michigan. 

Nancy Kaufman is the director of KCC- Kaufman Children's Center- near Detroit, Michigan. I took Chelsea there when she was 4 for an intensive boot camp, and it was WONDERFUL! I blogged about the experience HERE

Last night, Chelsea's school speech therapist and I were able to attend her workshop. She talked about:
  1. The Elements of CAS Therapy
  2. The 5 Word Lists To Teach Your Child
  3. Pivot Phrases
  4. Scripting Language at Home
It was a LOT of information, so I will be posting about it in sections. Part 1 is:

The Elements of CAS Therapy
  • Clearly defined goals!
  • Use multi-sensory cueing, then fade cues
  • Strategic motivation/ reinforcement 
  • Repetition, repetition, repetition!
  • Make it fun for the child

With clearly defined goals, the parent watching the session should be able to easily understand which goals/ sight words/ target phrases are being worked on.

Multi-sensory cueing means that you use different modes to communicate to the brain what is desired. You say (auditory) "Say tummy". You give visual hand signals to help the child remember the letter sounds. You may touch the child mouth (tactile) to help their brain remember which muscles to move.

Multi-sensory cueing is a huge component of the K-SLP method, which is the method Nancy Kaufman developed to treat Childhood Apraxia of Speech.

Your child will probably need many cues starting out, but you want to transfer the responsibility of saying the word to the child, so you need to fade cues over time. The goal is to have minimal or no cues. 

Meet the child where they are! If their name is Matthew, give them a nickname and teach "Matt" before starting to target the difficult diphthong "thew". Work up from what they ARE able to do right now to the correct word production.
All toys ready for rewards, but not where Chelsea can grab them

Use highly motivating activities/ rewards to reinforce your child during speech therapy. Kids aren't intrinsically motivated ("I should learn to talk better so people understand me!"), so you need very preferred items that are accessible and handy. No using valuable speech time rummaging in cupboards!

Start small with reinforcement, especially if your child has had bad experiences with speech therapy in the past. You want to show your child that it is worth it to do what you want them to do, because they get a BIG payoff.

You want it to be MORE rewarding to use words/ verbal approximations than to scream/ cry/ grunt/ point. If they say "Too-tie" they get a cookie RIGHT NOW! Forget the whole 'wait for dinner' thing if it was a big effort to say cookie.

So, you may need to start with "Do this!" and hit the table. If it is easy for the child to do, they will do it for the reward. You can gradually increase the difficulty of the task at hand, as the child gains confidence that they will be constantly rewarded.

Do WHATEVER is motivating to your child! If your kid likes to spit into the sun, you can use a water bottle and spray it into the sunshine! Let them throw toys into a bucket of water, or have some very exciting toys that they just love that are ONLY used for speech practice! 

Repetition is CRUCIAL for successful CAS therapy! You are re-training your motor plans that have been developed and muscle memory is already in place. Repetition tells your brain "This is very important, so remember it!" 

Friday, January 5, 2018

SATB2 Recommended Tests

After your child is diagnosed with a genetic syndrome, one of the first questions is, "What tests and evaluations should we get? What therapies will we need to do?" We want to know how to help our kids! 

So super fast, here is a brief run-down of all the best tests and evaluations.

Dr. Zarate, the leading SATB2 researcher, put together a list of recommendations on the official SATB2gene website

He recommends:
1. Genetic evaluation. (Obviously) 

2. Neurological evaluation (do an EEG and MRI). 

3. Physical Therapy evaluation (and therapy sessions). 

4. Occupational Therapy evaluation (and therapy sessions). 

5. Developmental Evaluation (for behavior treatment plan)

6. Neuropsychological Evaluation (test for IQ, etc) 

7. Speech Evaluation (and therapy sessions) 

8. Craniofacial Evaluation (cleft palate repair if needed)

9. Gastrointestinal Evaluation (to assess feeding issues)

10. DEXA scan (to test for osteopenia, may need treatment)

11. Dental evaluation (take x-rays, create dental care plan)

12. Ophthalmologist Evaluation (eye doctor, because several of our kids have lazy eye or 'typical' vision problems)

That was quite a list, wasn't it?! But wait, the moms of other SATB2 kids also gave recommendations for what tests they found most useful/ helpful in addition to Dr. Zarate's list of evaluations. 

1. Blood panel to test for vitamin deficiencies 

2. Meeting with a nutritionist to develop a dietary plan

3. Otolaryngologist (Ear/ Nose/ Throat doctor) has been helpful for many parents

4. Allergy testing

5. Cardiologist (I haven't met with one, but other moms have!)  

Tuesday, January 2, 2018

Teaching About Money to a SATB2 Child

I love doing my New Year Resolutions every January 1st. I go through and categorize my goals, create sub-goals and milestones to track progress, and then print it all out in a haze of glee as my husband watches my euphoric display of OCDness in amusement. 

The last couple of years, I have started my kids making goals too. Chelsea has decided that this year, she wants to:

1. Become a blue in gymnastics (second level)
2. Learn to swim
3. Be in a beauty pageant
4. Earn money by doing chores

As we are avid Dave Ramsey fans, I was very excited that she is interested in learning about money! I have given her chores to earn money in the past, but she loses focus easily. My son is doing the financial peace jr kit, and has a chart on the fridge where he can do jobs, and is paid at the end of the week.  

That wouldn't work for Chelsea. SO- I made her jars where she can visibly see her progress, and separated them out into "Give" and "Save" and "Spend".

I used this picture and printed off the labels and hot glued them to mason jars. 

The "Save" jar is really just a bigger, slower, "Spend" jar. To help keep Chelsea motivated, I got a picture of what she wanted to save up for (a new gymnastics leotard), and put in a bar to the side to show how close she was to her goal. 

Chelsea responds very well to visuals, so that works well for her! Also, I pay her immediately after she does her chores. We tried the weekly plus chart for about a year, which worked well for her brother, but it didn't have any concrete meaning for Chelsea, so she wasn't motivated by it. 

For the give/ save/ spend, I have her put a little bit into each jar. The amount into which jar doesn't matter to me; I just want her to learn to give to others, how to save for something big, and enjoy spending some of her hard-earned money on some things that she wants. 

She earns money from doing things like: completing her morning routine before 8 am, doing her speech/ OT practice without whining, dusting (by putting a sock on her hand and wiping up dust), helping to vacuum, etc. 

I really want her to understand the basics of personal finance; it is a concept that is SO important to know about! I figure by starting early and getting in lots of repetition, she will eventually know how to do a basic budget as an adult (fingers crossed!)

Tuesday, December 26, 2017

Plateauing and Regression

One of the things that almost all special needs parents experience is the frustration that comes with watching your child struggle for months or years to attain a certain skill, only to see that skill plateau or fade away. 

We have experienced this many times with Chelsea, and inevitably, I always wonder if I haven't been doing enough with her, if I am the reason that she isn't making any progress, or if it is because of my actions that she is losing abilities. 

I remember when Chelsea was learning how to walk. She would take a step or two, then not again for weeks. Then after hours and hours of painstaking work, she would take another couple of independent steps. The same process was repeated over and again before the skill FINALLY stuck.

Same thing with speech! At 2 years old, she had a grand total of 2 sounds. Not words. Just a repetitive "da-da-da-da-da" and a high pitched shrieking "Iiieeee" sound. Then came the speech therapy, and the first 6 months were unspeakably hard!

We worked on "mama" for hours every week, at home and in therapy, with me gently pressing her lips together and getting her to breathe out to form the "ma" sound. 

She finally said "mama" independently on Christmas Day, just before she turned 3 years old. Best Christmas gift ever! But then she lost it again, and it was months of more work before it came back. Once it did, other sounds came more readily. 

Now, Chelsea has many more sounds and words than she did at 4 years old, but has plateaued for the last year on speech. She really hasn't gained any new words, and has even lost a few.

I blamed it on myself and listed excuses- with this pregnancy, I have had WAY less energy than before and have been neglecting her "homework" sessions. That her brother is very spirited and demands a great deal of attention.
Seriously my son every day

I also blamed lack of private speech- my husband was out of a job and insurance last year for several months, and we pulled Chelsea from therapy for more than half a year. 

But you know what? I am doing the best I can, and sometimes, we will hit a plateau. But that is okay. We will eventually bounce back, and we will gain other skills in the mean time. 

Many times, Chelsea plateaus in one area of development while she "focuses" on another. This last year, she has regressed in speech, but also gained some significant fine motor skills and reading skills. 

I have to keep reminding myself that it is okay, that progress in other areas will come, and to not get hung up on Chelsea's deficiencies, and instead focus on her achievements. 

I also have to remind myself to not throw in the towel any time we hit a plateau or go through a regression. It is easy for me to start wondering why we are paying thousands of dollars each year when there is no progress seen at all. 

BUT- I believe in Chelsea! I know that even when she is taking a break from learning to say new words, she is working really hard on other things, like learning to jump, or write her name, or accomplish independence through self-help skills.