Down Syndrome with a Slice of Autism
Just another WordPress.com site, Here to help you navigate co-occurring Down syndrome and autism. My son, Nick is 30 years old and living his best life as an adult with DS-ASD.
Happy Labor Day
I hope everyone is having a nice, relaxing Labor Day weekend. I’m taking the day off and will press a new blog next week. Until then, if you haven’t read “Stuff On My Cat, Part II”, kick your feet up and enjoy @https://nickspecialneeds.wordpress.com/2013/07/08/blog-62stuff-on-my-cat-part-ii/
~Teresa 🙂
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.”
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
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.
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 🙂
Back to School Tips for Special Needs Kids
This week, my top 5 back to school tips for special needs kids and their parents. Click on this link to view @https://nickspecialneeds.wordpress.com/2012/08/27/blog-19-back-to-school/
Good luck with the new school year. That’s what is in my noggin this week!
~Teresa 🙂
Blog #121~ 10 Years of Autism
Last Saturday, the Chicago White Sox gave a replica of the 2005 World Series Ring to all the fans. This was to commemorate the 10 year anniversary of the Sox winning the World Series.
This sure beats the heck out of any bobble head they’ve given out…
I slipped the heavy ring on, that Al brought home from the game. I thought back on the week that the White Sox won the American League Championship securing their spot in the World Series. That was the week, that we got the firm diagnosis that our son Nick, had autism. Nick is now 21 years old and has Down syndrome along with autism. A lot has happened in the last 10 years, and I’ve learned plenty in the process.
What about the 11 years prior to the diagnosis of Nick having autism? Well, when he was 5 years old we had him tested but it was found that he was not on the autism spectrum because he was highly social and the oddities were due to having Sensory Integration Dysfunction.
According to the Sensory Processing Disorder Foundation (SPD Foundation), “Sensory Processing Disorder (SPD, formerly known as “sensory integration dysfunction”)
is a condition that exists when sensory signals don’t get organized into appropriate responses. Pioneering occupational therapist and neuroscientist A. Jean Ayres, PhD, likened SPD to a neurological “traffic jam” that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly. A person with SPD finds it difficult to process and act upon information received through the senses, which creates challenges in performing countless everyday tasks.”
Nick sought out input by tapping objects, walking heavily and stimming with his toys to help organize his senses. His occupational therapist worked with him weekly providing him with a sensory diet.
In addition, Nick also has Verbal Apraxia of Speech (an acquired oral motor speech disorder affecting an individual’s ability to translate conscious speech plans into motor plans, which results in limited and difficult speech ability). The sensory and speech conditions blurred the lines, therefore the autism didn’t come to view at the time.
As Nick entered the throes of puberty, it became evident that there was more to his behaviors than just Down syndrome. That’s when we sought out Little Friends Center for Autism to do an assessment 10 years ago. Looking back I had a hunch he did. However, part of me wasn’t ready to face such a daunting diagnosis as autism. We got the report from Little Friends the day that the White Sox won the ALC championship. That report was the key to opening up a new world for us.
The official diagnosis of autism, allowed us to request more specific services for Nick. This included a better communication system, behavior plan, training, finding the NADS (National Association for Down Syndrome) support group for dual diagnosis families, and respite care through the state. With the help of Little Friends, I attended training sessions to help Nick foster independence and better communication. More importantly, I learned how to get my son toilet trained once and for all, and out of those Depends diapers.
Nick has grown a lot in the last 10 years. Things are not near perfect, nor will they ever be. We face our daily battles. He is still stimming and raising autism awareness everywhere he goes. But the meltdowns are fewer and far between. Nick is happy and a funny guy. And when I see him standing there in his boxer briefs I am reminded of perhaps the greatest accomplishments in my life. I’m proud to say that we are done with what our autism community refers to as “Code Brown”
No more poop smears!
If you are a parent and have a hunch that your child may have autism, this is my wish for you. That you go get an assessment, take that piece of paper and use it as your ticket to get the services to help your child. Seeing where Nick is today is a sweet victory that I savor. It feels like I’m winning the series in Nick’s world. That’s what is in my noggin this week!
~Teresa 🙂
Blog #120~Lessons Learned on a Zip Line
Recently on a vacation to Punta Cana in the Dominican Republic, my siblings and I decided to book an excursion to go on a zip line. It seemed like a good idea at the time. You know something to knock off the bucket list. That is until the crew at Runners Adventures began to strap the equipment on me. The instructor explained the zip line course, proper technique and hand signals to watch for. There were 12 lines total, the first few were lower. All I had to do was make it through the first set and I could bail out. As we climbed the stairs to the first cable, the fear began paralyzing me.
The staff person clipped the metal hooks over the double cables and instructed me to sit back, tuck my knees in, and to rest my hand on the cable and keep it relaxed. I let go of my clenched fist and glided to the other side (and without one single scream or swear word). The second line was a fast one, 6 seconds to the other side (oh and be sure to smile because there was a photo op). I came down that line like a bullet and finished feeling like a crazed, adrenaline junkie.
The stairs leading up to the rest of the lines got higher and the cables were longer and more risky. My brother in law could see the look on my face, that of singular focus. He reminded me to take time to enjoy the scenery. I kept my hand loose soaring with ease and taking in the beautiful views. By the way, I made it through all 12 lines. 🙂
Later at the beach, I glanced out at the brilliant, blue Caribbean ocean reflecting on the adventure……
Sometimes, we need to push ourselves way out of the comfort zone. Doing something so scary and unfamiliar forces you to face life’s uncertainties. I have a lot of fears regarding my son, Nick. He is 21 years old, and has Down syndrome and autism. I worry about his future after he finishes the post-transition program next February. I’m uncertain about him living in a group home someday. Who is going to insure his safety? How will I know if he was possibly neglected or abused, since he has very limited speech? Will he think that I have abandoned him? Will he be fulfilled and loved as much as he is here at home?
Nick enjoying the hot tub on our deck……
I learned a few things on the zip line. Even if you are uncertain, you have to trust that the staff has your back and just let go. At some point, I need to loosen my grip and trust that others can take care of Nick in the future. It’s okay to be uncertain; but those fears can hold you back, and you might miss a great ride. In fact by relaxing my hand and letting go, I felt a spark ignite inside me. That’s what is in my noggin this week. 🙂
~Teresa
Summer Break
I’m taking the next two weeks off for a summer break. There are plenty of great stories and information about Down syndrome, autism and more in the archives located on the right side as you scroll down. Dig in and enjoy them! Thank you for reading and sharing Nick’s world. Have a great 4th of July holiday and be safe.
~Teresa
This week, a look back at summer fun over the years. Nick enjoys vacations especially if there is swimming involved. He is now 21 years old and has Down syndrome and autism. Click on this link to view @ https://nickspecialneeds.wordpress.com/2012/06/11/blog-11the-good-ole-summertime/
That’s what is in my noggin this week. Happy summer to everyone and thank you for reading and sharing Nick’s world!
~Teresa
Father’s Day Tribute
This week, a tribute to the men who have shaped Nick’s life along with my own. Nick is 21 years old, he has Down syndrome and autism. Nick and I wish you all a Happy Father’s Day and enjoy @ https://nickspecialneeds.wordpress.com/2012/06/18/blog-12-daddy-o/
Blog #119~ Autism Survival Kit
Recently I was reading a Facebook post. It was a poll, asking parents to name their number one necessity item needed for their child with autism. This got me thinking what would I include in an autism survival kit? My son Nick, is 21 years old and has Down syndrome and autism. Here is a list of 21 things that you might want to pack in that survival kit. Note, the last 4 are MY essentials 🙂
Figit toys…..
Transition Timer….
Laminated PECS pictures….
This is why I included nail polish remover….
School is going to be out for the summer. ESY (Extended School Year is a short day), so arm yourselves and be ready. What is YOUR necessity item that you would add to the kit? I’d love to hear it! That’s what is in my noggin this week.
~Teresa
Blog #118~ If You Can’t Fix It, Duct It!
I reported two weeks ago, that Nick’s talker (AAC device) has survived being dropped from the second floor of the Naperville Library and onto the railroad tracks off Montgomery Road. The case is sturdy but has taken a beating. Nick is 21 years old and has Down syndrome and autism. He’s a crafty one. It’s all we can do to keep up with his antics. The school team has come up with two things to secure his talker better.
First, the team has devised a bumper around the iAdapter case with foam and duct tape to absorb the impact. I’m thinking that we need to patent this prototype.
In addition, Nick has it tethered securely to his body with two straps (one over the shoulder and the other around his waist).
Nick is using his talker to make requests for iPad, Sprite, food items. When he burps he pushes the buttons, “excuse me” or “that’s gross”. The other night I was busy doing laundry and getting dinner ready. He was getting impatient and growing tired. He proceeded to push “stop”- “I’m tired”- “I want to eat”. When he finished dinner, he pushed the buttons “finished” and “bedtime”. I’ve also noticed that he is using more verbal language since getting talker 2 months ago!
At home I figured out a way to tether it to a shelf with Velcro straps in the kitchen so it’s accessible. So, between the straps and duct tape, we are staying one step ahead of big guy (at least for now). Hey it’s Nick’s world, the rest of us are just trying to keep up. That’s what is in my noggin this week!
~Teresa
Down Syndrome with a Slice of Autism 