Posted in Augmentative and Alternative Communication (AAC), Autism, Down syndrome, Speech and Occupational Therapy

Blog #123~UFC Rousey & Apraxia of Speech

Blog #123~UFC Rousey & Apraxia of Speech

Headline in ABC News last week, Ronda Rousey UFC champion fighter brings awareness to Apraxia of Speech! Take a look at the story featured on Good Morning America:

The lives of champion UFC fighter Ronda Rousey and speech pathologist and mom Laura Smith might seem worlds apart, but the two women share a unique connection.

Smith and her 5-year-old daughter, Ashlynn, met Rousey, 28, this spring at a book signing in Denver, Colorado, for Rousey’s autobiography, “My Fight/Your Fight.”

Smith told ABC News she was on a mission to meet Rousey in order to find out if the speech disorder she had as a child was the same condition that affected her daughter, Ashlynn, has.  

“I read probably everything she’s ever said about her speech impediment and the more I read I was like, ‘That was apraxia. This is apraxia,’” Smith recalled.

Childhood apraxia of speech is a motor speech disorder where the brain has problems coordinating with the body parts –- like lips, jaw and tongue -– needed for speech, according to the American Speech-Language Hearing Association.

“At first I was tested for deafness,” Rousey said of her own childhood struggle. “They thought maybe my pronunciation was off because I was hearing things differently.”  

“But it was really I had all these words perfectly arranged in my head, it’s just when they tried to come out of my mouth they sounded different,” she said. “It was kind of like there was a divide between my brain and my mouth.”  

Because apraxia was not a common diagnosis when Rousey was a child, no one suspected it was what was behind the fighter’s speech problems. That is, until Smith gave Rousey a brochure on apraxia at the book signing.  

“I threw the brochure and the bodyguards came in immediately to get it,” Smith said. “She [Rousey] picked it up and I was like, ‘If you did have it, would you say it in your interviews because it would mean so much for our kids.’”

Rousey says the information in the brochure struck her instantly.  

“I actually ended up reading through the whole thing that night and was like, ‘Oh my God, this is all exactly it. This is exactly what it was,’” Rousey said. “I didn’t know it was actually apraxia until that moment.”  

“She really taught me a lot about myself that day and I can’t thank her enough for it,” Rousey said of Smith.  

To thank Smith and her daughter, Rousey sent a special message, doing exactly what Smith asked her to do at the book signing, talking about apraxia.

“Hi Laura and Ashlynn,” Rousey said in the taped message. “I just wanted to say I’m so happy to hear everything that you’re doing to raise awareness of apraxia.”

“You definitely raised awareness in me and I just wish you all the best,” she said. “I know our paths will cross again someday at some point so I can’t wait to see you again.”

Ronda Rousey ABC news

So just what does apraxia look like?   The American Speech–Language–Hearing Association, describes childhood apraxia of speech (CAS) “is a motor speech disorder. Children with CAS have problems saying sounds, syllables, and words. This is not because of muscle weakness or paralysis. The brain has problems planning to move the body parts (e.g., lips, jaw, tongue) needed for speech. The messages from the brain to the mouth are disrupted, and the person cannot move his or her lips or tongue to the right place to say sounds correctly, even though the muscles are not weak.”

This hits home for me. My son Nick who is 21 years old and has Down syndrome and autism was given the diagnosis of apraxia when he was 6 years old. While his language skills have improved with speech therapy, he still struggles with articulating words. When he tries to imitate some words he gets stuck.  Nick continues to go to speech therapy, uses sign language, a picture exchange communication system (PECS) and has an AAC device with an app called Touch Chat to further facilitate his communication.

For more information including symptoms, causes, testing and treatment click on the on these links:

http://www.webmd.com/brain/apraxia-symptoms-causes-tests-treatments?page=3

http://www.apraxia-kids.org/

http://www.speakingofapraxia.com/  The first ever parent guide to childhood apraxia of speech, written by Leslie Lindsay

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The meeting of Smith and Rousey at the book signing resulted in raising awareness of apraxia. Rousey posted the brochure on her Facebook page, which has been liked by nearly 7 million as of last week.

ronda-rousey-book

Here’s to Rousey who has won many fights in her life both in and outside the ring.  She has no doubt given inspiration to kids and their parents around the world. I hope this information helps parents and children who are struggling with speech difficulties. That’s what’s in my noggin this week.

~Teresa 🙂

Posted in Autism, Down syndrome, Physical Therapy and Special Needs, Speech and Occupational Therapy

Blog #100~20 Tidbits about Nick

Blog #100~ 20 Tidbits about Nick

To celebrate the 100 milestone of this blog “Down Syndrome with a Slice of Autism,” I made a list of 20 things about my son Nick.

Nick 20 years ago, what a little kewpie doll…..

Nick baby

1. Nick was born the day after his Dad’s birthday.

2. Nick was in NICU and on oxygen for one week due to an AV valve in his heart not closing.  Fortunately, this closed up within a week.  He was released from the hospital on Valentine’s Day which was also Ash Wednesday.

Aqua heart

3. Nick started early intervention with speech, occupational and physical therapy at 8 weeks old. They taught him sign language. He worked on a stability ball to build core strength long before it became trendy.

4. Nick was the youngest child to start horseback riding therapy in the early intervention program at age one.

5. We use to prop up pillows on the sides of his high chair to keep him from flopping over to the side, until his core became stronger.

Nick high chair

6. Due to his low muscle tone (a trait of Down syndrome) he didn’t walk or eat solid foods until he was 3 ½ years old.  We did a co-treatment with extensive OT and speech therapy with a feeding specialist using the Debra Beckman feeding technique

7. Nick doesn’t like yogurt or applesauce because I’d mix this awful smelling and tasting Nutrivene Vitamin Supplement into them.

8. To get Nick to pull up to stand, his brother would bounce ping pong balls on the coffee table to catch his attention. I also hung several music toys over the fireplace so he had to pull up to his feet to hear the music. (Hmmmm, maybe that’s why he’s obsessed with pushing buttons.) 🙂

9. Nick has been to the top of the Eiffel Tower and Notre Dame Cathedral.

Nick Eiffel Tower

10. He has been overseas three times including London, France and Spain.

11. Nick can replicate exact sneezes, high and low pitch, big and small ones.

12. He is so flexible that he can sleep with his legs crossed and folded all the way forward.

13. Nick’s a thrill seeker and will sign “more” as soon as a roller coaster ride is over.

14. He hates to wear hat and gloves no matter how cold it is.

Nick sled

Unless he’s indoors :)……….

Nick Winter Ninja

15. Nick’s favorite actor is Eddie Murphy, in the movies The Nutty Professor, Doctor Doolittle, and Norbit.

16. He doesn’t like any fruit at all (except raspberries, that is giving and getting them). He does LOVE salads.

raspberry

17. He won a gold medal in the softball throw event at the Illinois State Special Olympics.

Nick Special Olympics

18. Nick was evaluated for autism at age 5, but didn’t get a formal diagnosis until he was 11 years old.

19. Nick has a thing for dolphins and beluga whales.

Nick Kiss

20. Before the 30 fire alarm pulls, Nick would grab car remote keys and set the alarms off.

Hope you enjoyed the 20 snippets about Nick.  Thank you so much for reading and sharing Nick’s world for the last 100 blogs.   That’s what is in my noggin this week. 🙂

~Teresa

20 Year Old Nick…..

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Follow Nick:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

 

Posted in Augmentative and Alternative Communication (AAC), Speech and Occupational Therapy

Blog #45~Can We Talk?

 

Blog#45~Can We Talk?

How does someone like Nick who has Down syndrome and autism communicate his needs and wants?  Let me start at the beginning.  When Nick was in the infant program he was taught sign language.  He would sign “more, all done, yes, no and other basic words.”  Using sign language gave him a voice when the low tone of having Down syndrome slowed up his speech.

When he was around 4 years old I began to snap photographs and put them on one of those blue school pocket charts.  These pictures included things he enjoyed like juice, Goldfish, Thomas the Train and Barney videos. These worked great and he understood all of them.

In first grade I requested an assessment to see if he would do better with an augmentative and alternative communication device. According to  About.com, Augmentative communication is an alternative way to help students and adults with language disorders use expressive language or receptive language. Augmentative communication can be accomplished through assistive technology devices such as computers or hand held devices. Low technology such as picture communication systems can also be used as augmentative communication.

The evaluator came out to the home to try some of the voice output devices with Nick.  He just stimmed on the devices,  hitting the buttons rapid fire like a DJ scratching a rap record.

Cat-DJ-Scratch-Set-1

The evaluator concluded that it would serve Nick better to use a low tech picture system to help him communicate.  She gave me a handful of laminated pictures (goldfish, chicken tenders, pasta, milk, juice and Coke.) They were like rare, gold coins that I treasured. (There was nothing like Google Images back when he was 6 years old.) You either had to snap photographs, cut out pictures out of magazines or beg for icons from the speech therapist. Note that around this time, Nick was also diagnosed with Verbal Apraxia of Speech which further complicated his ablility to articulate.  For years, Nick used pictures and sign language to communicate his needs.

Since Nick can’t read or write and his verbal skills are limited, he needs support.  What we learned is that someone like Nick who has autism tends to see things clearly with pictures.  If he can see it, he can understand it.  In fifth grade the school team was trained on how to use the PECS (Picture Exchange Communication System). There is a precise protocol to the system.  Once the protocol was followed, Nick made great strides in using the pictures to communicate wants and needs. He finally had a voice! 🙂

The cost of buying the software used by most schools is steep as well.  A Mayer-Johnson Boardmaker program can be $400-$800 dollars!  However, if you are a parent you can purchase these programs for 1/2 price. 🙂  Also if your CD gets damaged (aka, Nick dropping it from the second floor) they will replace it for no charge.  Check with your support teacher, as they should have access to this software and will make any laminated icons you might need for home use.  In addition, check with your local library and agencies like Easter Seals to see if they have it available to check out.

Most of the time Nick puts the pictures and icons on a velcro strip and hands it to the caregiver.  However sometimes he gets a little more creative. 🙂

“Hey Mom,  I’ve laid out my plan for what I want to do now”……..

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Poor Kitty, nap interrupted………..

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The next re-evaluation came in middle school.  The team decided to try Nick on a voice output device.  He was given a set amount time to just play and stim on it.  But then, he began to understand that the device was to be used to communicate.  There are all sizes and the cost for these can be thousands of dollars. Nick’s was around $8,000 dollars.  The Dynavox V was the Cadillac of AAC (Augmentative and Alternative Communication)  devices that would grow with Nick. This was provided by the school district. We found out later that the Dynavox V had major drawback.  It was that it was heavy and bulky.

Dynavox V or as we named it “The Brick”……

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After a few years with the Dynavox,  We looked into other devices that would be more portable and less obtrusive. We ditched the “Brick” and moved to an iPod touch loaded with a program called Touch Chat.  Another popular program is called Proloquo2Go.  I like Touch Chat because you can upload your own pictures as well as using theirs. Both programs are excellent. The iPod is protected and enhanced with sound using a case with speakers- (iMainGo Speaker case.)

imaingo case

In essence, it is an electronic version of his PECS communication book.  He still needs a lot of practice using it properly without stimming on it.  The jury is still out on whether this will take over as his primary means to communicate.

Touch chat screen….

touch chat pic

Finding the means to help Nick’s communicate continues to be a work in progress. If he is on the phone with you he might say hi and your name if he recognizes your voice.  But mostly he will smile and wave.

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He continues to use some verbal speech,  sign language, Pecs picture book and the iPod Touch Chat.  It’s like walking down the stairs.  Sometimes you need to hold onto the handrail and sometimes you don’t.   All of these communication methods are his handrail that support and facilitate his speech.

I have learned that there is no perfect way to help with speech.  All of these serve him and have their drawbacks.  It’s always good to have the backup PECS book in case the batteries die or the device goes for an unexpected dip in the pool. I hope this gives you some insight into the evolution of Nick’s way of talking through the years.  That’s what is in my noggin this week.

~Teresa 🙂