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

SOA_mock (2)

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, Behavior/ ABA, Down syndrome

Blog #122~Parent Stress and Autism

Blog #122~ Parent Stress and Autism

Research has clearly shown that mothers of children with autism experience more stress, depression and poorer health than is typical of mothers in general. Autism Research Review (ARRI) reports this editorial, “Parental Stress in Autism Spectrum Disorders: In a survey of 219 parents of children with autism, Sharpley, et al. (1997), found that more than 80% reported sometimes being “stretched beyond their limits,” with mothers reporting higher stress levels than fathers.   The authors commented that the three most stressful factors are “(a) concern over the permanency of the condition; (b) poor acceptance of autistic behaviors by society and, often, by other family members; and (c) the very low levels of social support received by parents.”

I know of this stress too well. My son, Nick is 21 years old and has Down syndrome and autism. His impulsivity is at an all-time high. In the 5 minutes I stepped out to roll the garbage bins to the curb, he cleared out a desk drawer and threw the contents all over place. A few days before, he was up at 4am and proceeded to take two bottles of salad dressing and dump them all over the kitchen and laundry room floors.

At least he put the empty bottles in the recycle bin 🙂

dressing

According to an article written in Disability Scoop (www.disabilityscoop.com):

“Mothers of adolescents and adults with autism experience chronic stress comparable to combat soldiers and struggle with frequent fatigue and work interruptions, new research finds. These moms also spend significantly more time caregiving than moms of those without disabilities.

Researchers followed a group of moms of adolescents and adults with autism for eight days in a row. Moms were interviewed at the end of each day about their experiences and on four of the days researchers measured the moms’ hormone levels to assess their stress.

They found that a hormone associated with stress was extremely low, consistent with people experiencing chronic stress such as soldiers in combat, the researchers report in one of two studies published in the Journal of Autism and Developmental Disorders.

Such hormone levels have been associated with chronic health problems and can affect glucose regulation, immune functioning and mental activity, researchers say.

autism war girl

Now, I would never compare my level of stress to that of a combat soldier. But I do have to remain on point to keep up with Nick. I must jump out of my skin dozens of times a day when he pushes the ADT keypad, microwave, garbage disposal, and phone intercom buttons, runs upstairs to run the faucets full blast, or empties a full basket of folded laundry and the basket off the second floor.  Mix in sleep deprivation and dodging potential meltdowns situations, topped with a constant barrage of stimming sounds all of which send tension levels skyrocketing.

autism and sleep cartoon

The stress of parenting a child with autism is high for many reasons. Parents cope with grief, worries about the future, struggling to find resources and support for their child on top of handling the behavior and communication issues associated with having autism.

A child with autism may display unpredictable and disruptive behaviors have meltdowns that can be of danger to themselves and others and have trouble sleeping through the night. Deficits in speech and communication can contribute to behavior problems as well. In addition, parents may be dealing with seizure disorders related to autism.

A child’s autism diagnosis affects every member of the family in different ways. Parents must now place their primary focus on helping their child with autism. This may put pressure on their marriage, other children, work, finances, and personal relationships and responsibilities. Much of the focus shifts to finding resources and spending money towards treatment and interventions for their child. These needs can complicate family relationships, especially with siblings.

So what coping mechanisms help a parent dealing with anxiety and drained of energy?

*Get involved with support groups locally and online

*Obtain respite care and apply for funding for supportive services.

*Get your child/young adult into programs and social groups specifically tailored to autism.

*Carve out time to enjoy leisure activities like exercise, massage, meditation and self-relaxation techniques.

These can go a long way towards improving mental health and reduce the strain caused daily. While I try and do most of things, there are some days that push me close to the edge. Ask any parent raising a child with autism and they will tell you that some days you just can’t combat the stress.  That’s what is in my noggin (and heart) this week.

~Teresa