Tag: Down syndrome and autism

Posted in Autism, Down syndrome, Education and Special Needs

Blog #132~Countdown to the End of School

Posted on by Teresa Unnerstall

#132~Countdown to the End of School

countdown-timer

The clock is ticking, and rapidly might I add.  Coming off the holidays, I’ve hit the ground running.  You see in less than a month my son, Nick will be aging out of the school system.  He is 21 years old and has Down syndrome and autism.  The day before his 22nd birthday will be the final day that the little yellow bus stops coming to the door.

yellow-bus

We’ve been preparing for this day for months.  The post-secondary transition program he is attending (STEPS) has done an excellent job to map out a plan for this to be a seamless transition.  Last Friday, Nick visited the new facility (an adult day program).  His speech therapists took pictures and made a social story for Nick.  A person with autism benefits from having a visual schedule.  If they can see it, they can understand it.  This helps with reducing anxiety levels.  Here are a few of pictures from the social story:

Adult Day program site……

Keeler

Nick in the gym….

Nick gym

Nick will have a recycling job, elbows to that!

Nick recycling

Starting this week, Nick will be going to the new facility for half the day on Tuesday and Thursday.  The next couple of weeks he will expand his time there.

The other piece of the puzzle is transportation.  We have to insure that Nick can utilize the Ride DuPage successfully on his own. He will be doing some practice runs with his job coach. Then, if all goes well on his own with someone to meet him at curbside. We have requested a car to pick up rather than a bus.  This is the piece of the puzzle that keeps me up at night.  It’s uncharted territory that is giving me anxiety.  Nick actually does well in the car as he likes to be on the go.  Just make sure the window and door locks are set, he has some tappers to stim on and nothing to throw at the driver. I should pick up some Windex wipes so he can wipe the snot rockets off the window as well.  🙂

As the clock is ticking, I’m busy getting him to doctor and dentist appointments, arranging for a new  talker device and case (his current AAC device has to be given back to STEPS) and working with insurance to hopefully get speech and occupational therapy set up in his  new program.  In addition, the waiver to which Nick receives funding thru the state will need to be switched from the child to the adult waiver (which will increase his funds to support the day program).  The pressure is on, this needs to work, it has to work.  Nick needs to be in a structured program.  And this is an excellent one with a caring and qualified staff.  And I need to keep teaching my fitness classes and have my own life (and sanity).  Wish us luck, that’s what is in my “nervous” noggin this week.

~Teresa

Follow Nick:

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@Down Syndrome With A Slice of Autism

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Posted in Autism, Recreation/Leisure and Special Needs, Resources for Special Needs

Blog #131~Christmas Ideas for a Child with Special Needs

Posted on by Teresa Unnerstall

Blog #131~ Christmas Ideas for a Special Needs Child

There’s only 11 more shopping days until Christmas. Are you struggling to find a gift for a child with special needs?  My son Nick has Down syndrome and autism.  For 21 years I’ve worried if I was doing enough and finding the right toys to help him thrive while having fun.  You name it we’ve done it from the mini trampoline to Tickle Me Elmo (and every light up, musical toy in between).  🙂

Nick toys

Children with special needs often have sensory issues. They struggle to process sensory information.  Some children are sensitive to touch, while others are sensitive to sounds or lights.  Toys and activities geared to be more visual, tactile, and interactive can help with these sensory issues.  Gifts that appeal to the senses like plushies, figit toys, putty, stress balls and flashlights are popular.

figit toys

Books that have predictable patterns, repetition and rhymes are enjoyable such as the classics like “Good Night Moon,” “If You Give a Mouse a Cookie,” and Dr. Seuss books. Interactive books can help with language skills.

talk

Puzzles can help with fine motor and cognitive skills.  Many have sound bites to provide additional feedback.

soundpuzzle

More gift ideas………

*Music table

music table

*Art easel

*Vibrating pillow

*Air hockey

*Musical animals

music animals

*Musical trampoline

trampoline

*Solar System in My Room

solar system

*Tranquil turtle

tranquil turtle

*Putty (www.puttyworld.com) It glows and changes colors!

puttyworld

You can find these gifts on the Amazon and Toy R Us websites. There are many more ideas at www.nationalautismresources.com.  Also, I have a resource page listed on this Wordpress site.

Holiday Ideas from Suburban Pediatric Therapies (where Nick goes to speech and occupational therapy):holiday gifts spt

 

Cheers to a fun filled holiday season for your child with special needs. I hope these gift ideas will help make the season a little brighter. Thank you to all the parents and therapists who helped to contribute to the gift list.   That’s what is in my noggin this week.

~Teresa 🙂

 

 

Posted in Autism, Down syndrome, Education and Special Needs

Blog #130~Documentary “Graduating Peter”

Posted on by Teresa Unnerstall

Blog #130~ Documentary “Graduating Peter”

Over the weekend, I watched a documentary on HBO called “Graduating Peter”.   Actually I’ve seen it before many years ago, but have a new perspective on it now that my son is older. My son Nick is 21 years old and has Down syndrome and autism.  The original documentary which won an Academy Award in 1992 was “Educating Peter”.  Peter Gwazdauskas, a special needs boy with Down syndrome, was the first student to go into the inclusion classroom in his school district.  Federal law states that special needs students should be educated with regularly developing students in traditional schools. Peter’s first half of the school year was not going well, (due to behaviors such as making loud noises, rolling around on the floor, and being injurious towards other students in class).  But he made improvements and gained acceptance as time went on.

Peter in elementary school in Blacksburg, Virginia….

educating-peter-1008318-p

In the sequel “Graduating Peter” (2001), the journey continues from middle school until high school graduation.   The adolescence environment was not as accepting of his behaviors (like grabbing another student’s roll at lunch and throwing it at him).  His spoken language skills were limited.  He had no way to express how he feels and it came out in his behaviors.  The isolation from peers led to Peter suffering through depression.  During the school day, Peter had aides with him in school because he cannot function well due to his disabilities.  He also had several jobs during the time (sweeping mass transit buses, dishwashing at a hotel restaurant, doing laundry at school, etc…).  In the summer, his mom hired an aide to continue to work on community interaction and job skills. I loved seeing Peter’s face light up when he rode the roller coaster at a peer buddy program event.   In addition, he becomes the manager of the high school soccer team. He beamed with pride having a deep sense of friendship with his teammates.  Peter makes them understand there are bigger issues in life than just soccer.  In his senior year, he escorts a date to the prom and graduates with his class!

Peter at high school graduation….

gradpete1

My son Nick would have no part of the graduation hat and tassel……

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Peter’s mom did a great job as his advocate.  She understood her son and realized that his lack of spoken language was his biggest disorder.  Her desire was for Peter to live in the community as independently as possible and to have a meaningful job that he enjoys along with maintaining friendships.  I understand her plight.  My desire for my son is the same.  Nick has the hurdle of autism along with Down syndrome.  This limits his chances of having a paid job in the future and living independently.  Nonetheless, Nick takes pride in the work he does at school and home.

Nick unloaded the dishwasher unsupervised last night. A bit topsy turvy but everything in the proper place…….

dishes

As I posted on the update last Monday, Nick has many jobs and leisure activities in the community thanks to some wonderful respite workers! 🙂  Here’s Nick making a delivery run to a school. In the boxes are home made ice packs they assembled in his STEPS program he attends….

Nick delivery

Keeping those  community outlets open, providing communication supports and a good staff can help a child with disabilities lead a full and meaningful life.  The documentary “Graduating Peter” while showing the struggles of living with Down syndrome also sheds a light on how important relationships are.  Positive peer relationships can help a person with special needs feel accepted and thrive in the community.  That’s what in my noggin this week. 🙂

~Teresa

***IMPORTANT NOTE:  Set your DVR’s for Tues. Dec. 8th 10/9central on A&E don’t miss “Born This Way”–7 Adults with Down Syndrome share their lives.  Check out my Facebook page called “Down syndrome with a Slice of Autism to see the preview!

Posted in Autism, Down syndrome, Fun Side of Nick, Recreation/Leisure and Special Needs

Update~Nick’s World

Posted on by Teresa Unnerstall

Update~Nick’s World

I just got back from a routine doctor’s appointment for Nick.  He completely enjoyed imitating the coughing and throat clearing sounds the gentlemen next to us in the waiting room.  Since the morning has dwindled away, I am opting to give you and update on Nick’s world instead of pulling something out of my noggin to write.  Nick is 21 years old and has Down syndrome and autism.  Here’s a little slice of his world and what he’s been up to (besides imitating others hacking and sneezing)………

Nick attends a post-secondary transition program called STEPS.  His days are full of work jobs,  occupational and speech therapy, cooking, community trips and other school-related activities.  A big thank you to Jodi, who took many of these pictures of Nick’s world.

Nick helps to make ice packs which he delivers to the schools in our district….

Nick delivery

Ding dong, ding dong, ding dong, guess who’s here?

Nick delivery 2

Community trip bowling…..

Nick bowling ramp

Sensory break time at school……

Nick relaxing.jpg

Dinner with his buddies at Ci Ci’s Pizza……

Nick Ci Ci's

Visit to WVHS Wrestling Team venue, he had to try on the headgear 🙂

Nick Wrestling

Nick dancing in Miss R’s (respite worker) boots….

Nick Dancing

Nick the “winter ninja” relaxing at home…..

Nick Winter Ninja

As you can see, Nick has a very full life which he enjoys every day.  I have to thank his respite workers for taking such good care of him and getting him out into the community.  That’s a slice of Nick’s world and what’s in my noggin this week! 🙂

~Teresa

 

Posted in Autism, Down syndrome, Fun Side of Nick, Uncategorized

Happy Thanksgiving

Posted on by Teresa Unnerstall

In my noggin this week (besides the to-do list) is a post I wrote two years ago called, “5 Reasons I am Thankful for Nick”. Here’s the link:

https://nickspecialneeds.wordpress.com/2013/11/25/blog-755-reasons-i-am-thankful-for-nick/

Have a blessed Thanksgiving!  I am thankful for all your support and for reading & sharing Nick’s world.

~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.

IMG_0026

*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!

photo (30)

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 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…..

IMG01 (13)

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!!!

IMG_5116

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 🙂