Tag: Down syndrome

Posted in Autism, Down syndrome, Education and Special Needs

Blog #129~ Communication Strategies and Autism

Posted on by Teresa Unnerstall

Blog #129~ Communication Strategies and Autism

Last week I attended a presentation given by Brian R. King (www.brianraymondking.com).  This was part of the Autism Expert Series at The College of DuPage.  The topic was “Speaking of Autism: Communication Strategies for Connection and Collaboration with Those on the Autism Spectrum”. Brian has firsthand experience in this area. He is a best selling author, speaker, trainer and life coach.  As a cancer survivor, adult with A.D.D., the father of three sons on the autism spectrum as well as someone who lives on the autism spectrum himself, he has learned something very critical:  “That success in life has nothing to do with circumstances, but everything to do with strategies”. ~Brian R. King

autism puzzle superman

In his presentation, Brian covered 6 main areas of needs and provided strategies specific to those on the autism spectrum:

  • Certainty:  What things can be put in place that that are predictable and consistent?  Meltdowns can happen when a need for certainty is not met.  So it is important to put a loop hole in daily plans.  Make sure you have “Plan A” and “Plan B” in place and explain both beforehand.  Plan A is golfing, but if it rains then go to Plan B a pre-set indoor activity.  If they can trust that there is a Plan B, there will be less anxiety and a willingness to be flexible. 
  • Variety:  As important as certainty is, there is a need to keep variety in the mix.  Life can’t always be about going to McDonalds for lunch. You’ve got to step off the curb.  Look up other restaurants on the web that have similar menu items with your child.  Together, come up with a plan to try a new spot. Be prepared to have an escape plan, if the trip doesn’t go as planned so the child can decompress.
  • Significance:  People on the autism spectrum need to know they matter.  What might appear to be attention seeking behavior (talking out of turn, not raising their hand to answer a question) may be an attempt to be noticed, validated and to be a part of the group. Another example is this; a child may not process the question as quickly as their peers.  They might just make up an answer or a lie when put on the spot.  One teacher tip would be to ask the question and say, “Johnny I’m going to come back to you in a couple of minutes”.  This allows the child to process the question and not just blurt out any answer.  Visuals can also help to process information.  Provide a tool to write down the assignment.

visual work board

  • Love and Connection:  Working with those on the autism spectrum requires patience and letting the child know that you hear them, understand them and have their back.  It is essential to pause, and avoid lecture or shame.  But rather teach that you want them learn from mistakes.  Be their cushion of safety so they feel cared for and loved.

understanding

  • Growth:  We all have a desire to make progress and see results of improvement.  What need is the child going toward?  Often there is a tendency to gravitate to certainty.  Look for ways to have the child excel in those places of certainty.  In contrast, keep in mind the child will tend to avoid areas where there are too many opportunities to fail. These are the places that will require more support.
  • Contribution:  When you have something of value to give, you feel more significant.  Look for those strengths and allow the child on the autism spectrum to shine.

My son Nick working the vacuum at a community job……

Nick vacumming_Tabor Hills (3)

  Assessing these 6 areas of needs and putting strategies in place will set your child up for success. It will also help those on the autism spectrum feel secure, valued, and connected and a part of the group/community.   I am always looking for ways to help my son.  Nick is 21 years old and has Down syndrome and autism.  After attending this presentation I’ve identified some areas I need strengthen within these strategies.  This includes getting a “Plan B” more consistently, continue to stretch his boundaries, listen to him when he tries to get attention inappropriately, and allow him to shine in what he does the best. 

Thank you Brian R. King, for shining a light on how to better communicate with those on the autism spectrum and provide strategies to support them. That’s what is in my noggin this week.

~Teresa 

Posted in Autism, Down syndrome, Fun Side of Nick

Blog #128~ Lessons From Dick Van Dyke

Posted on by Teresa Unnerstall

Blog #128~ Lessons From Dick Van Dyke

I just finished reading Dick Van Dyke’s new book, Keep Moving and other Tips and Truths About Aging. In the book jacket it reads:

“Show-business legend Dick Van Dyke is living proof that life does get better the longer you live it. Who better to offer instruction, advice and humor than someone who’s entering his ninth decade with a jaunty two-step? Van Dyke isn’t just a born song-and-dance man; his irrepressible belief in embracing the moment and unleashing his inner child have proved to be the ultimate elixir of youth.”

Dick Van Dyke Keep Moving

It was a quick read packed with some good advice, tips and anecdotes. After I put the book down, it got me thinking about my son Nick, who is 21 years old and has Down syndrome and autism.  Many of the suggestions given are things that my son does every day.  Here are just a few of the many ideas Dick shares:

*Keep moving! If Dick Van Dyke is at the store and hears music playing he starts dancing. Work out regularly.  Van Dyke was on the treadmill humming.  A guy next to him asked, “Hey you’re humming! The rest of us are huffing and puffing and you’re humming.  How do you do that?”  Van Dyke replied, “Vocal cords are muscles too.  But also humming, as with a Buddhist chanting, singing or even an infant making noises as it discovers its voice, sets up a sympathetic frequency in your body that simply feels good.”

Dick Van Dyke at store

*You don’t have to act your age. You don’t even have to feel it. There is no way you have to behave. Be a goofball, have fun, and be silly.

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*Keep your sense of humor. Van Dyke writes, “I once heard someone say that if you can’t laugh at life, you’re missing the joke. I agree.  As far as I’m concerned, a sense of humor is the way we make sense out of nonsense.”

*Have a daily routine. Get up and get moving, make lists, work out, go shopping, learn new things, ask questions, take a nap, and always enjoy a nightly dessert.

*Don’t forget to smile. Don’t forget to make someone else smile 🙂

While these ideas are simple, what stands out to me is having the right attitude to approach each day. It’s the theme which threads through his book.  I see a lot of this in my son. He wakes up; usually cuts a fart and laughs.  If you’ve ever been around Nick, you know that he spends a great amount of time dancing and humming.   He also thrives on his daily routines aided by a picture sequence that serves as his list. And yes, his infectious smile will make your day!

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Inside the Keep Moving book jacket really sums up the essence of my message this week. “Dick’s optimistic outlook is an invigorating tonic for anyone who needs a reminder that life should be lived with enthusiasm despite what the calendar says”.  My son Nick embraces this.  He is my daily prompt to live that way each day.  That is what’s in my noggin this week.

~Teresa 🙂

Posted in Down syndrome, Health Issues and Special Needs Child, Physical Therapy and Special Needs, Speech and Occupational Therapy

Blog #127~So, Your Baby has Down syndrome

Posted on by Teresa Unnerstall

Blog #127~So, Your Baby has Down syndrome        

In October everything turns pink for Breast Cancer Awareness Month. But did you know it’s also Down Syndrome Awareness Month?

Twenty-one years ago I gave birth to my son Nick. The doctor detected several markers that he might have Down syndrome.  The next day, a hospital social worker handed me two brochures about Down syndrome. That is was what I had to work off of.

Here are the facts about Down syndrome courtesy of The National Down Syndrome Society, www.ndss.org:

  • Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.
  • There are three types of Down syndrome: trisomy 21 (nondisjunction) accounts for 95 percent of cases, translocation accounts for about 4 percent and mosaicism accounts for about 1 percent.
  • Down syndrome is the most commonly occurring chromosomal condition. One in every 691 babies in the United States is born with Down syndrome.
  • There are more than 400,000 people living with Down syndrome in the United States.
  • Down syndrome occurs in people of all races and economic levels.
  • The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80 percent of children with Down syndrome are born to women younger than 35.
  • People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer’s disease, childhood leukemia and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.
  • A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all.
  • Life expectancy for people with Down syndrome has increased dramatically in recent decades — from 25 years old in 1983 to 60 years old today.
  • People with Down syndrome attend school, work and participate in decisions that affect them, and contribute to society in many wonderful ways.
  • All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses.
  • Quality educational programs, a stimulating home environment, good health care and positive support from family, friends and the community enable people with Down syndrome to develop their full potential and lead fulfilling lives.

I think back on that 33-year-old mom who was unsure of her future. What advice would I give her today?

Down syndrome journey

First, I would say that everything is going to be OK. The path will be different and move slower. But your child will work through the low muscle tone with the help of early intervention programs. The benchmarks like sitting up, crawling, walking and eating solid food will take longer to reach. Try to be patient and rest assured that your child will hit them.

Nick, age one….

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The next thing I would tell her is that there will be angels that light a path along the way. Embrace them and incorporate what you learn at home. The speech therapists will teach him how to blow bubbles, work on lip closure, feeding and to use sign language along with songs to communicate. The occupational and physical therapists will guide him in fine and gross motor skills. The teachers will hold the lantern and illuminate his mind. The social support groups will be your shoulders to lean on.

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Finally, I would share this message. Your baby was born with Down syndrome, but they are a person first. People with Down syndrome experience the same emotions that you and I do. Your life will change for the better as you savor the sweet victories. They will steal your heart and touch others in ways you can’t imagine. Your child will bring a unique perspective of seeing the best of the human spirit.

Nick in Sox hat

This is my advice to the young mother who just gave birth to a beautiful baby, who just happens to have Down syndrome. That’s what is in my noggin this week. 🙂

~Teresa

Posted in Autism, Down syndrome, Education and Special Needs, Fun Side of Nick

Blog #126~Nick and the Varsity Football Team

Posted on by Teresa Unnerstall

Blog #126~Nick and the Varsity Football Team

Recently Nick and his respite worker Jodi were taking a walk around the Waubonsie Lake trail. Suddenly, Nick took off running towards the high school.  Jodi scanned past the trail to figure out what Nick was going after.  His face lights up.  Oh no, it’s the “KEY TREE!”

key tree

The football players hang their car keys here.

Nick is 21 years old and has Down syndrome and autism. Long before the 34 fire alarms he has pulled since third grade, he discovered car remotes.  He sought them out feverishly.  He’d even fish them out of babysitter’s purses, run to the front door, and set off their car alarms.

Back to the key tree…… Nick is cheetah fast when it comes to setting off alarms.  Jodi had no intention of letting Nick disrupt football practice so she sacrificed her own remote to distract him.  Hey, I’ve said it before.  Its Nick’s world, the rest of us are just trying to keep up. 🙂

When football practice was over, Jodi took Nick over to say hi to the team. Her son, Tyler plays center for the Waubonsie Valley High School football team.  Nick is about half his size standing 5’2 and weighing barely 110 pounds soaking wet.

Nick with Tyler….

Nick and Tyler

On Thursday nights after practice, the players get treated to a pasta dinner. Nick helps set up and pour drinks for all the players.  He elbow bumped each player as they came through to get their food.

Nick loves his pasta!

Nick meatballs

He also assisted in cleaning up afterwards…..

Nick and Dan

After dinner Nick helped the coaches pass out the senior’s white jerseys. He kissed each jersey before he tossed them at the players.  They would laugh and elbow bump him as each passed through the line.

Nick has a way of livening things up. The Warrior football players are always excited to see him at practices and dinner.  They have named Nick their “Warrior Dude”.  As a mom, it makes me so happy to know that Nick is getting out in the world, meeting new friends and bringing smiles (and chuckles) along the way.  That’s what is in my noggin this week.  Go Warriors!

Nick and Football team

~Teresa 🙂

Posted in Autism, Down syndrome

Columbus Day

Posted on by Teresa Unnerstall

Columbus Day

Columbus Day

Nick is home today for Columbus Day holiday. I’ve decided enjoy the day with him instead of trying write.  Be sure and check our Facebook page, “Down Syndrome With A Slice Of Autism” for daily posts including informative articles, musings, fun pics and videos of Big Guy, Nick!

Have a great week!

Teresa and Nick 🙂

Posted in Augmentative and Alternative Communication (AAC), Autism, Down syndrome, Education and Special Needs, Tech Stuff/Apps and Video Based Instruction

Blog #125~Success Stories with the AAC Talker Device

Posted on by Teresa Unnerstall

Blog #125~Success Stories with the AAC Talker Device

Nick has been using his new talker for about 5 months now. People with severe speech or language problems often use an AAC (Augmentative and Alternative Communication) to supplement existing speech or replace speech that is not functional. In addition, picture symbols called PECS (Picture Exchange System) and sign language are used to help individuals express themselves.

Nick’s PECS Book…..

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During the spring, the staff at Nick’s school along with his private speech therapists met to look at what type of device would work best for him to communicate. Nick is 21 years old and has Down syndrome and autism. A series of 3 meetings were held to address the student’s abilities, gather data and consider options for appropriate inclusive technology products. This process is called the SETT Framework. SETT is an acronym for Student, Environment, Tasks and Tools. To read more about this process go to the archives and read Blog #113~Ready, SETT, Go and Blog #116~A New Talker for Nick.

Since the SETT meetings, Nick has been using an iPad with and iAdapter case. The program installed is called, Touch Chat. The initial update I gave on this device is in the archives posted on 5/18/15.   We had a few goals in mind. One was to be able to request items like food, movies, music, going out into the community. Secondly we wanted Nick to use the talker to gain attention appropriately. Finally, we hoped that Nick would be able to express his feelings (happy, angry, and frustrated).

Nick has been requesting food items very well along with items of interest to him like tennis balls, sprite, music, people he wants to see, tired etc.. on a consistent basis. In addition, he has been using it to gain attention. When he burps or farts he pushes the “excuse me” or “that’s gross”. If you try and find a certain button on his talker, he will hit “excuse me” as if to say, back off this device is mine. Last week he pushed the button with a keyboard on it. He wanted me to know he had played the keyboard at school that day.

Brian, his private speech therapists spends a lot of time working with Nick and his AAC device. The two go trolling around the speech clinic looking for ladies. Brian added a new button which Nick has been pushing, “You look pretty today, hubba-hubba!” That one has been a big hit 🙂

Nick’s talker, note the bumper pads the team installed.  Nick likes to send it airborne on occasion 🙂

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Last week, there was a major breakthrough with Nick using his talker. One trigger that often leads to a major meltdown for Nick is a crying baby or child. He will begin to pinch himself on his cheeks, followed by pinching anyone near him when this happens. This happened at an airport, leading to a severe meltdown the summer before last. While on a community trip at IHOP on Friday, a child began to cry at a table near them and Nick began to pinch himself. His teacher pointed to the talker instructing Nick to use it. Nick immediately took it and began to push the “stop” button. The first two times he hit the stop button the child stopped screaming. The look on Nick’s face was priceless. It might have been just a coincidence, but in that moment Nick realized using the talker really does work. His teacher cheered and praised him. He was so proud. It was as if he realized that he had power over the situation.

Yay Nick!!!

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It reminds me of many years ago, when the staff got trained to use PECS with Nick. His world of limited speech left him frustrated in those days during puberty. This resulted in many horrific meltdowns.  Using the PECS pictures gave him power; it gave him a voice (much like the talker is starting to do now). The key to the AAC device being successful will be getting everybody on board. Everyone that works with Nick needs to encourage him to use it (and praise him when he does). I look forward to sharing more of his successes with the talker and building on to this. I know he has much more to tell us all. That’s what is in my noggin this week.

~Teresa 🙂

 

Posted in Autism, Down syndrome, Recreation/Leisure and Special Needs

Blog #124~Sports and Your Special Needs Child

Posted on by Teresa Unnerstall

Blog #124~Sports and Your Special Needs Child

Having a child with special needs and finding sports and leisure activities that suit their level isn’t always easy. My son Nick is 21 years old and has Down syndrome and autism. Nick has participated in Special Olympics, Top Soccer, and Challenger League Baseball programs.  Today I want to highlight the baseball program (The Challenger Division).

Special Olympics (http//www.specialolympics.org)

Nick stands on the top of the podium winning  the Illinois State Gold Medal in the softball throw….

Nick Special Olympics

Top Soccer (http//www.usyouthsoccer.org/programs/topsoccer)

Nick Top Soccer

Baseball-The Challenger Division http://www.littleleague.org/learn/about/divisions/challenger.htm

“The Challenger Division was established in 1989 as a separate division of Little League to enable boys and girls with physical and mental challenges, ages 4-18, or up to age 22 if still enrolled in high school, to enjoy the game of baseball along with the millions of other children who participate in this sport worldwide.  Today, more than 30,000 children participate in more than 900 Challenger Divisions worldwide.

Teams are set up according to abilities, rather than age, and can include as many as 15-20 players. Challenger games can be played as tee ball games, coach pitch, player pitch, or a combination of the three.

One of the benefits of having a Challenger Division is that it encourages the use of “buddies” for the Challenger players. The buddies assist the Challenger players on the field, but whenever possible, encourage the players to bat and make plays themselves. However, the buddy is always nearby to help when needed.”

Nick challenger league

Nick would hit off the tee and a volunteer buddy would help him around the bases. It was a great experience. Check out our Facebook page called “Down Syndrome With A Slice Of Autism” to view a wonderful video about The Challenge League. Or go to this link to see more @http://videos.littleleague.org/video/2015/09/09/What+the+Challenger+Game+means+to+Little-wzODBndzpy

I highly recommend looking into sports programs for your child with special needs. The Challenger League was a wonderful program to be involved in. Play ball, that’s what’s in my noggin.

~Teresa 🙂

 

Posted in Autism, Down syndrome, Fun Side of Nick

Happy Labor Day

Posted on by Teresa Unnerstall

Happy Labor Day

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 🙂

Posted in Down syndrome, Education and Special Needs

Back to School Tips for Special Needs Kids

Posted on by Teresa Unnerstall

Back-to-School

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 🙂

Posted in Autism, Down syndrome, Speech and Occupational Therapy

Blog #121~10 Years of Autism

Posted on by Teresa Unnerstall

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…

White Sox Ring

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.

Sox Nick and mom

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.

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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!

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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 🙂