Author: Teresa Unnerstall

Teresa is the author of "A New Course: A Mother's Journey Navigating Down Syndrome and Autism" and the mother of two boys. Her youngest son, Nick is 30 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). Teresa's passion is helping others understand and navigate co-occurring Down syndrome and autism. She is a DS-ASD consultant, advocate, nationally known speaker, and author. Follow Nick on Facebook, Instagram & Pinterest @Down Syndrome With A Slice of Autism and on Twitter @tjunnerstall. For more information, media links, and booking Teresa for a speaking engagement visit https://www.teresaunnerstall.com

Blog #60~Wandering and Autism: 7 Prevention Strategies

Posted on July 1, 2013April 15, 2019 by Teresa Unnerstall

Blog #60~ Wandering and Autism: 7 Prevention Strategies

HEADLINES……

“Car hits, kills 11-year-old autistic boy on the Katy Freeway”

“Body found in pond is missing autistic child”

“Autistic boy found dead, face down in a lake”

A lost child is a parent’s worst nightmare. Sadly, the headlines above are just a sample of instances involving wandering/elopement and autism all over the country.

Much like the wandering behaviors in seniors with dementia or Alzheimer’s, children and adults with an Autism Spectrum Disorder (ASD) are prone to wandering away from a safe environment. A study done by The Interactive Autism Network through the Kennedy Krieger Institute found this: “49% of children with autism attempt to elope from a safe environment, a rate nearly four times higher than their unaffected siblings. Two in three parents of elopers reported their missing children had a “close call” with a traffic injury. Thirty-two percent of parents reported a “close call” with a possible drowning.”

I understand this fear all too well. There have been a several occasions where Nick has wandered, taken off at the pool and bolted down the street. Nick is 19 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). He has deficits in the areas of language and cognitive function which limits his understanding of safety. He has no concept of danger.

One day when Nick 11 years old he was on the swing set in the backyard. His Dad stepped inside to grab a baseball hat for a second. Something made me stop and put down the garden shovel next to the flat of flowers. I walked around to the backyard. He was gone.

Al came out the patio door. I shouted to him, “Did Nick go inside?”

“No, I just came in for a second to grab a baseball hat.”

I felt a hot wave run through my body as I climbed up the burm, the slow crested hill that separated the backyard from the busy street.

Al had recently ruptured his Achilles tendon and was wearing a therapy boot. He hobbled up slowly behind me. There was nothing but a stream of fast-moving cars pacing the road behind our house.

I called out to his older brother, “Hank, go to the front and check with the neighbors and see if anyone saw him okay. Do it now!”

My neighbor came over, “I saw him a few minutes ago. He got off the swing and started chasing a bunny.” He pointed his finger left, “He ran that way.”

In the Midwest, the yards blend from one to the next in a seamless row like football fields connected one after the other. I squinted hoping to see some movement. There was nothing, just eerie silence. I took off running. A dozen houses down, nothing. Over ten minutes had passed since he had gone missing. I was in panic mode, my body was shaking and legs began to fatigue. I kept sprinting but there were only five houses left before the subdivision entrance. Suddenly, I saw a small figure running. “Nick stop now!”

He just kept going. My strides turned into leaps. I caught up with him 2 houses before he reached the subdivision entrance. He looked at me as if nothing was wrong. We walked in silence back home. I gripped his hand tightly and counted how many houses he had run passed. Final count=20 houses!

It makes me sick to my stomach recalling that horrible day. We have since put some things in place as a precaution to keep Nick safe. What can families do to insure the safety of their child? In my research, I found an excellent website called AWAARE which stands for Autism Wandering Awareness Alerts Response Education: www.awaare.org. This site has a comprehensive list of tips, materials and tools.

7 TIPS FOR WANDERING AND AUTISM RISK MANAGEMENT:

1. Secure your home

Install secure door locks, home security systems, install inexpensive battery operated alarms on door and window to alert when opened. Place hook and eye locks on all doors above your childs reach. Fence in the yard and put visuals like stop signs to doors.

Here is what we have on our doors…….

2. Get an ID Bracelet

Medic Alert, www.medicalert.org is what Nick wears and it stays on him firm.

Another popular bracelet is called Project Lifesaver, www.projectlifesaver.org.

3. Consider a mobile tracking device

Project Lifesaver (https://projectlifesaver.org), Angel Sense https://www.angelsense.com) and LoJack SafetyNet (www.safetynetbylojack.com) services have wrist and ankle tracking devices. There are many other mobile GPS tracking systems you can purchase at Best Buy and other big box stores along with phone apps as well. See the resource page on the AWAARE website above for more information.

4. Teach your child to swim

A large percentage of the headlines for wandering and autism end tragically because of drowning deaths. Children are often drawn to water. Check your local YMCA or special recreation association for swim lessons.

5. Alert your neighbors

Make a simple handout with your name, address, phone number, information about your child (autism, non-verbal etc….) and include a photograph of your child. Ask them to call you immediately if they see your child outside of your home.

6. Alert First Responders

Provide the local police and fire stations with key information before an incident occurs. Ask your local police department if they have a data base and registration program for individuals with special needs. See the AWAARE website given above for printable handouts. There is also a free Big Red Safety Toolkit with free downloads on wandering and prevention.

7. Work with an ABA Therapist on a Behavior Plan

A BCBA certified behavior therapist can help with understanding the child’s goal and triggers that cause them to wander. The child may be trying to get to something they prefer, or avoid something they don’t want to do. When you can determine the function of this behavior, you can put supports and strategies in place to decrease wandering or bolting. If the behavior is occuring in school, address this with the IEP team and put measures in place to insure safety for your child.

Nick still requires 24/7 supervision and the house is sealed up like Fort Knox. As a family we have to make sure there is always a designated watchman. After doing this research on autism and wandering, I understand the necessity to be proactive and more responsible. Next stop: Make a call into the local police and fire stations to see what they have in place for wandering and persons with autism and other special needs in our community. Discussion of this topic needs to continue. I will be researching more tracking and monitoring devices. Look for this on Part Two of Autism and Wandering within the next two weeks.

That’s what is in my noggin this week!

~Teresa 🙂

Follow Nick:

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Augmentative and Alternative Communication (AAC), Autism, Fun Side of Nick

Blog #59~ The Sleuth Detective

Posted on June 24, 2013October 3, 2013 by Teresa Unnerstall

Blog #59~ The Sleuth Detective

The iPod has disappeared, here we go again…..geesh. One of the many “gifts” that Nick has given me besides razor sharp reflexes is a keen eye as a sleuth detective.

Things have a way of vanishing into a *black hole around here.

Since Nick has Down syndrome and autism and limited verbal skills, I can’t exactly ask him to back track his steps to find his iPod. I showed him the media bin where it’s should be kept as I signed the word, “help.”

Then, I pointed to the icon in his communication book asking him where is it? I am met with a blank stare. So, I take off to check the usual spots. First stop, behind the couch….nada. Next, a peer underneath my bed….nil. Now I have to do some back tracking. When did he have his iPod last? Over twenty minutes have past as I searched the house. Then I remembered he was hanging out in Hank’s room. I do a full room scan for a few minutes then zero in on the bed. I pulled the comforter back…..bingo!

A few weeks ago I thought I was losing my mind. I had a stack of letters sitting on the kitchen counter that I was going to mail the next day. Poof, they were gone. I sent a text to Al to see if he had mailed them…… nope. I followed the trail again checking the usual spots….crickets……

“Oh great, now what? Please don’t be in the trash.”

I dug my way down the garbage, picking through as coffee grounds and gunk stuck to my hands. No luck.

Finally I had one last thought. I opened the door to the basement that is in a state of disarray after being flooded from the spring rains in April………

There’s an hour of my life I will never get back.

What is the worst thing that has vanished in the black hole? The entire contents (10 pages) filled with icons out of Nick’s communication book. I spent a day and a half a day sniffing out every trail I could think of that Nick might have taken. I couldn’t imagine having to make all those icons, laminate and apply the Velcro again.

Noooooooooooooooooooooooooooo!

I went into the bathroom to see if he might have flushed them down the toilet. Well, it wouldn’t be the first time. In Blog #21~ What is Normal? (located in the September 2012 archives), I wrote about the time my leopard reader glasses went missing. I always keep them next to the laptop in the same place. The next day Sergio, our plumber was fixing a clogged toilet……

“I found out why your toilet was clogged. You can still wear theeeese glasses they were in clean water, not poopy water.”

Leopard readers back in it’s rightful place…..

The toilet flushed just fine, what a relief….. The next day, I went to get Nick’s work bins that are stored on a high shelf in the laundry room. I glanced inside one. He had emptied his book one by one and put them all in here. Whew……Thank goodness! 🙂

Communication Book restored, we dodged a bullet on that one…..

The phone went missing a few weeks ago. The phone is easy to find since you can hit the intercom button, but not this time. Finally I discovered it tucked in the blue bin where I keep my blow dryer. Normally I just reach up and pull the dryer out, but last Thursday and I pulled the whole bin down. Mystery solved, inside there it sat, the long, lost uncharged phone.

It seems as I write this piece there is a pattern emerging. Nick definitely likes to drop things, but then other times he likes to put them up in those high bins. Note to self for the next thing that drops into the black hole. There are no lessons
to be learned this week. It’s just a slice of life in Nick’s world…. The rest of us are just trying to keep up! That’s what is in my noggin.

~Teresa

*According to Wikipedia: “A black hole is a region of space-time from which gravity prevents anything, including light, from escaping.^[1] The theory of general relativity predicts that a sufficiently compact mass will deform space-time to form a black hole. Around a black hole, there is a mathematically defined surface called an event horizon that marks the point of no return. The hole is called “black” because it absorbs all the light that hits the horizon, reflecting nothing, just like a perfect black body in thermodynamics.”

Autism, Education and Special Needs

Blog #58~ Dad’s Tool Kit

Posted on June 17, 2013October 3, 2013 by Teresa Unnerstall

Blog #58~ Dad’s Tool Kit

How does a man growing up land locked in Hot Springs, Arkansas end up racing sailboats on Galveston Bay? That’s my Dad. Indulge me this week, I am missing him. Tommy graduated with a master’s degree from The University of Arkansas and landed a job at as a Research Chemist at Shell Oil Company which brought him to the waters. He built his first boat on his own and fell in love with the sailing.

Dad on the boat he built……..

I think about lessons that I learned from him. It was never formal like those polite moments in the pristine living room between the Beaver and Ward Cleaver. I just noticed things.

Here’s what I picked up from Dad’s tool kit………

1. Keep your car clean and vacuumed

Dad was always washing cars, rubbing the interior with a rag and kept them vacuumed on a regular basis. He kept the 1974 green Nova sedan and later the 1981 beige Chevy Chevette immaculate. I cringe when I see a car with empty cola drinks and bags of fast food discarded in the back seat like it’s a dumpster. Dad showed me that it was a sign of respect to take care of your valuables. So there laid the seeds for my need to have order.

When it comes to raising children you need order, especially with a child such as Nick, who has Down syndrome and autism. A predictable and orderly environment helps him make sense of his world and be able to function better. It helps me as well to feel in control and stay anchored.

2. Dab it with Mercurochrome™

Dad skipped the Band-Aid opting for Mercurochrome™ instead. He would douse his cuts and scrapes with this awful red-orange stained antiseptic.

When I was a kid there was a wart on my leg that would not go away. The over-the-counter treatments from the drugstore didn’t do a thing to rid it. One evening Dad brought some dry ice from work. He applied it to the wart. Within a matter of days, it disappeared. He and mom made sure I had my own fully loaded toolbox when I moved into my own home. When I started gardening, he gave me one of his sturdy shovels. I still use that same shovel each spring when I plant the tomato seedlings. In a way, he is right there with me.

Sometimes finding your own way to take care of things can produce better results. Over the years I have learned to find my own solutions when Nick came upon a hurdle in his development. You can’t expect the IEP team members, therapists or doctors to have all the answers. Sometimes you have to dig on your own to figure out what will work best for your child. Don’t settle for just a Band-Aid.

3.Read the Wall Street Journal daily

Every morning Dad read the paper and did the crossword puzzle. Upon retirement he became a regular at the La Porte Library reading the daily Wall Street Journal there. What a thirst for knowledge. None of us could keep up when Jeopardy was on. Just as Alex Trebek spoke and barely finished his phrase my Dad would have the answer.

Never stop reading and educating yourself. It is essential for parents who have a child with special needs to keep up with the latest news, research. Education is empowerment and as a parent you owe it to your child to be an informed advocate.

4.Why not give it a try?

In the winter, when the garden was dormant, Dad would bake long loaves of French or pumpernickel bread.

For a while Pops got on this Asian cuisine kick. Once we attempted to make our own eggroll skins. It was labor intensive and we never mastered the art of getting them thin enough. In hindsight I would suggest just buying the readymade skins at the store.

Dad also travelled extensively across the world when he retired. Whether it was flying across a zip line in Costa Rica in his 70’s or dancing Swan Lake wearing a tutu along with stripped tube socks and Sperry Top Siders while on a cruise in Russia, he embraced it fully.

Having a child with special needs can bring many limitations to a family. It’s easy to stay in the safe shell of home but there’s a problem with this. Your world can become too narrow. Al and I have tried not to let this happen. Nick has traveled with us on vacations including three different trips overseas to England, France and Spain. Was it easy?….. NO!

Can it be done?…… YES!

Big Bend in London along with Grandma Theresa (oh no not the fanny pack again)…… 🙂

I never imagined Nick could go scuba diving. But he did! 🙂 If you haven’t read this story check it out, (See Blog #53~ Scuba, Really? located in the May 2013 archives). Sometimes the bread comes out perfect. Other times it’s a big flop, like those sad little egg roll skins. But you have to give new things a try. Grab onto that zip line and just hold on tight!

5. There ain’t no crying in baseball

Dad loved this movie, A League of Their Own. A few years ago, at age 76, he got the diagnosis of stage four lung cancer. I will never forget the message he sent via email quoting that line in the header of his note to family and friends. Here it is in part……

“While you all are now sitting there long-faced and maybe teary, let me tell you some of the good side:

I’ve had 76 years (so far) of a great life with a wonderful family and friends. Over 17 years of retirement, with trips to Europe, Asia, Africa, South and Central America, down under, to mention a few. And a terrrific 2nd life as an Ensign sailor/crew.”

Raising a child with special needs has brought many obstacles. Nothing ever comes easy. Often things seem impossible and unbearable. Sadness is part of life. I’ve had my share of pity parties over the past 19 years. But Dad showed me how to handle problems with quiet dignity. As I re-read his words above I am reminded of the fact that there are many beautiful things in life that you should always try to keep in the forefront. Nick’s infectious smile and sense of humor…. Well it’s pretty “terrrrific!” 🙂

Nick and his cousin, Austin playing with Paw-Paw Tommy…..

Hope you enjoyed some of the tools I have picked up from Pops over the years. That’s what is in my noggin this week.

~Teresa

Autism, Down syndrome, Education and Special Needs

Blog #57~ Community Jobs and Nick

Posted on June 10, 2013 by Teresa Unnerstall

Blog #57~ Community Jobs and Nick

How does someone who has special needs of both Down syndrome and autism find work in the community? This week I am excited to have a guest blogger. I asked Sara Stoodley, the Vocational Coordinator at Nick’s high school to write a few thoughts on Nick’s jobs. In Blog #46~ A Day in the Life of Nick (located in the March 2013 archives) I wrote about a typical day at school along with his community jobs. He has some in school jobs such as working in the cafeteria, washing PE clothes and shredding. Out in the community he worked at three different sites. He worked at Tabor Hills (elderly residence home) doing maintenance, Re-Store- Habitat for Humanity (packaging and maintenance) and Adopt Pet Shelter (sorting newspapers for the animal cages.) I think it is interesting to get different perspectives on Nick. 🙂 Here’s what Sara had to share:

Community Jobs and Nick

By Sara Stoodley, Vocational Coordinator MVHS

It’s hard to believe it’s been two year since I began working with Nick-what a wild ride! In my 10 years of working in this field, Nick is one of the most unique individuals I have ever worked with! When I began at Metea last year, I began developing work training sites for ALL of our students, and I never imagined Nick not being a part of that. Through his time in community work block, he has increased his endurance, time on task, initiative, and his willingness to try new experiences. Given who Nick is, you must always be on your toes! Overall, Nick has had more good days than bad, and when they’re good they’re GOOD, but when they’re bad, they’re BAD.

Two stories come to mind:

THE GOOD: In his last week at Tabor Hills, he had an amazing day!!!! Each week, his job is to vacuum an area within the facility. All year, at both sites in which he vacuums we have been working with him to independently get the vacuum, unravel the cord, plug it in, turn on the vacuum, and start working. Most times, Nick needs a prompt to complete each of the steps as he will lollygag, get distracted, sit on the floor, etc. However, on this day, he completed the whole process by himself!!! What a huge accomplishment for Nick! It was also very rewarding for the team of people that he works with to see that he does have it in him 🙂

THE BAD: Two words-FIRE ALARM! Nick always has staff with him 1:1 while he works and everyone that works with him is aware of the thrill the sounds of a fire alarm have on him. However, one day last year, he was a sneaky little fox at Tabor Hills, a supported living facility, and identified an alarm that he had not previously recognized and he got it!!! Can you imagine the panic that went through the staff that was with him, the residents, the facility staff, and the community? Staff immediately responded to alert the administrators that it was indeed Nick who pulled the fire alarm and that there was no immediate danger but in the moment, YOWZA! Great response by all and well Nick, he was pretty proud of himself 🙂

The team is only as strong as its members. In my time working with Nick, it has always been a team. Given my role in the building, the opportunity for 1:1 time with students is limited so I rely on Nick’s team (Teachers, Support staff, Speech Pathologist, Social Worker, Occupational Therapist, etc) to assist me in finding the balance, learning his needs, and working to support the development of work skills while always striving for more for both him and our employers!

Nick has strengthened my belief that all students deserve and should be out working. He has increased my marketing repertoire as I have, at times, had to work to keep him at the job sites given who he is as an individual. He has reminded me that there is never a dull moment and to always be on my toes as you never know what he is going to throw at you! What a pleasure and experience it has been, thank you Nick!

Nick doing packaging at Re-Store- Habitat for Humanity with Miss R…….

A special thank you to Sara Stoodley for sharing her perspective of how Nick operates in his community jobs. That’s what is in my noggin this week. 🙂

~Teresa

Education and Special Needs, Fun Side of Nick

Blog #56~ Cap and Gown…. or just gown?

Posted on June 3, 2013October 3, 2013 by Teresa Unnerstall

Blog #56~ Cap and Gown…. or just gown?

I unfurled the gown and hung it up so the crease marks would begin to loosen. While the iron warm up I took a look at the cap and tassel and put it on my head.

“Hmmmmmm, ten bucks that’s not going to stay on Nick’s head.”

If you think about it the graduation cap is a silly looking thing. You try to walk and the tassel is bouncing around, dangling in your face. The hat never sits firmly on your head. Who came up with such a dumb looking cap for such a scholarly milestone? Here are a few facts I pulled off of Wikipedia about the cap and gown:

Graduation portrait of Linus Pauling wearing a mortarboard, 1922

“The square academic cap, graduate cap, or mortarboard^] (because of its similarity in appearance to the hawk used by bricklayers to hold mortar) or Oxford cap, is an item of academic head dress consisting of a horizontal square board fixed upon a skull-cap, with a tassel attached to the center. In the UK and the US, it is commonly referred to the mortarboard is generally believed by scholars to have developed from the biretta, a similar-looking hat worn by Roman Catholic clergy. The biretta itself may have been a development of the Roman pileus quadratus, a type of skullcap with superposed square and tump.”

I wasn’t sure what moment the tissues would be needed that day. It happened when I got down the stairs holding the freshly pressed gown. I saw the family gathered in the living room then it hit me. Gulp, eyes welled up with tears. So much had happened in the last 19 years to get Nick to this day.

Armed with an icon strip I made early that morning, we dropped Nick off with Miss R, his teacher.

We waited anxiously for the moment when Nick would be walking in with his senior class. The processional-*Pomp and Circumstance always gets to me. It’s a powerful song that never ceases to put a lump in my throat, symbolizing pride and valor and victory. We waited as the classmates fill in the rows of chairs, knowing that with our last name it would be awhile. Then he appeared…….Big guy Nick!

The first thing I noticed was that he wasn’t wearing his cap….. shocker, right 🙂 He followed the line compliantly with his bare head and distinctive double cowlicks. I couldn’t help but see how much shorter he stood next to his peers. At least we could spot him easily amongst the 600+ students.

I guess we didn’t need to waste that Google search on whether the tassel is worn on the left or right side. 🙂

The senior reflection address given by the Salutatorian made mention of one thing that caught our attention. “Metea Valley Class of 2013, we have been pioneers for the last four years. Together we have survived the ACT’s and the winter fire drills of 2009….” Looks like Nick indirectly got a shout out. 🙂

Considering the size of his class, the ceremony moved swiftly as the roll came from two sides in rapid fire. Nick made his way up to the podium to accept his diploma. So far so good! Wait, not so fast……plop there goes the diploma. The person presenting the diploma picked it up and handed it back to Nick who proceeded to drop it a second time. Then, as Nick reached the stairs at the end of the stage, he tossed it to the floor. By now there was a log jam of students lining up behind him trying to get back to their row of seats. Well, at least he sat quietly and was appropriate through the rest of the ceremony. Plus, we dodged the DeKalb Fire Department getting called to the scene. All in all, it was a grand day full of family, love, laughter and wait for it…….

You guessed it, chocolate cake!

It was a blessing to have my family in from Texas. Thanks to Babs, my mom, Laura, Scott, Jenna and Jake for making the trek up. Al’s parents Jim and Theresa were also a part of the celebration. Milestones such as graduations much like birthdays are benchmarks to pause and look back at the life we have lived. If you haven’t read Blog #41~Back to the Future, located in the February 2013 archives I would highly recommend you doing so (don’t forget to grab the tissues.) Having a child who has Down syndrome and autism has been full of challenges. His obstacles have been enormous. Hundreds of hours of physical, occupational and speech therapy, 17 IEP meetings along with blood sweat and tears have molded Nick into the young man that he was meant to be.

It’s been one heck of a ride, and I couldn’t be more proud of Big Guy! That’s what is in my noggin this week. 🙂

~Teresa

*”Pomp and Circumstance” was composed by Sir Edward Elgar (b. 6/2/1857 d. 2/26/1934). “Pomp and Circumstance” was first performed on October 19, 1901 in Liverpool, England. As the students commence onto the stage they are handed their diplomas and given a handshake. It is at that point the students flip the tassels on their hats.

Education and Special Needs

Memorial Day Holiday Break

Posted on May 28, 2013October 3, 2013 by Teresa Unnerstall

Memorial Day Holiday Break

We are having a great time this weekend with my family (Babs-my mom, Laura-Sis and her husband Scott along with my nephew Jake and Jenna my niece.) Lots of laughs, fake sneezes, whoopee cushion fart humor, elbows rubs and fun. 🙂 Al’s parents (Jim and Theresa) also joined us to celebrate Nick’s graduation from high school held at the Northern Illinois University Convocation Center.

NIU Home of the Huskies!

Burning questions dear readers???????

*Did Nick pull a fire alarm at the graduation?

*Was there any hand flapping as he made his way across the stage?

*Did that cap and tassel stay on his head? 🙂

*Just what did happened after Nick was handed his diploma?

Tune in next Monday to find out! Blessing to our troops and veterans today.

~Teresa 🙂

Education and Special Needs, Fun Side of Nick

Blog #55~School Days

Posted on May 20, 2013September 18, 2014 by Teresa Unnerstall

Blog #55~ School Days

I can’t believe tomorrow is Nick’s last day of school. He graduates from high school on Sunday. Recently after our basement flooded, I was going through some wet boxes and found my old “school days” book. I flipped through the yellow pages looking at pictures and my vital statistics (height, weight, activities, awards and achievements.)

Nice handwriting there, T…… 🙂

This prompted me to share some school day pictures of Nick. I pulled out his box of memorabilia from his closet. Nestled inside I found his old baby blanket, christening candle, artwork, an autographed baseball and his book.

There’s just one problem. I only filled out first grade, the rest well……crickets….chirp…

Here are some of Nick’s school Portraits over the years 🙂

Nick’s 2^nd Grade picture. I love this toothless grin, one of my favs!

3rd Grade…..

4th Grade, this is my Mom’s favorite……….

In many pictures, Nick smiles with his eyes…… As Tyra Banks calls it “smizing” 😉

The awkward early pre-teen years… Don’t we all have one we’d rather leave stuffed in the drawer?

Speaking of awkward, check out this mug shot from freshman year. None of my family has seen this one. This photo package remains fully in tact stuffed in a shoe box.

It’s never easy to get a good photograph of Nick. Trying to get him to look into the camera, smile, keep his hands from flapping is a daunting task. Having Down syndrome and autism makes for some interesting stories. If you haven’t read Blog #5~Ready, Set, Action- Check it out ( June 2012 archives). It’s a classic Nick story 🙂

High School ……He’s getting bigger, and it looks like I should have run the Norelco over his stubble…..

Junior year of high School…..

Hope you enjoyed a look back at Nick. My how he has grown. If you want to see Nick’s senior portrait you’ll have to wait until next week. I think this blog just became Nick’s school days book. That’s what is in my noggin this week!

~Teresa 🙂

Autism, Down syndrome, Recreation/Leisure and Special Needs

Blog #54~Mom Helpline

Posted on May 13, 2013May 13, 2013 by Teresa Unnerstall

Blog #54~Mom Helpline

What did I want for Mother’s Day? ……………………. Just the sound of crickets.…..

I applaud the moms who enjoy breakfast in bed served by their kids. I am not there anymore. Really all I want is a little peace. For me, it is having the luxury to take some time to do simple errands. Not rushing at a mad pace. It’s a gift just knowing that someone is watching Nick so I don’t have to bust my ass to get home. And so I did. I took my time after teaching two spin classes. I drove out of work slowly taking a chill pace towards Oswego. I stopped off at Ulta, Kohls, Target. Oh how I love you three amigos! Ladies, you are with me here, right? 🙂

So I got my wish, to breathe, stretch my arms out and enjoy doing what I like. I also received a nice handmade gift from Nick.

It lasted less than a day hanging on the shepherds hook. A menacing squirrel plucked it off and darted across the yard holding it in his mouth. Al got my favorites, Yankee Candles and a new fountain for the deck. That’s how I get my Zen on.

While Nick showers me with little kisses, his older brother is more understated. Hank quietly posted a message on Facebook, “Happy Mother’s Day, Madre! You’re the best.”

Later he emerged out of the shower clean shaven and said, “This is your mother’s day gift.” He knows exactly how to win his Madre’s heart.

While I was out driving yesterday and I pondered on what to write about for this week. How is being a mom of a child with special needs different? The images of my all my fellow warrior moms came to mind. The path we were given is worn with sleeplessness that extends for years. The basic milestones like eating solid foods, walking, talking, and potty training take longer to reach. Some of these may never be met. The ones that do get met are sweet and savory. Warrior moms become experts on their child’s diagnosis and IEP’s (Individualized Education Plans.) They learn a whole new vocabulary of words from doctors, educators, speech, occupational and physical therapists. They juggle schedules to all of these therapies and carve out time to attend conferences and seminars to learn more about how to improve the quality of life for their child. They become advocates for their child and help others who follow behind them. Those with children who have behavior problems have to shift gears during a mid laundry fold and clean up a splatter or cut a meltdown off at the pass.

This is just one of many things Nick has dumped out. For the full list check out Blog #3~Getting Your Goat, located in the April 2012 Archives!

Sometimes the meltdowns just happen and the warrior mom has to maintain patience while their child is hitting, biting, pinching, kicking and destroying everything in their path. It’s not all doom and gloom. Having a son like Nick who has Down syndrome and autism can also bring sweetness, innocence and unconditional love. That is what keeps me fueled as I take a breath and get ready for another day.

What can you do to help a mom with a child who has special needs? It means a great deal when I get a message, text or card. Knowing that someone is thinking about you can really make a person’s day. Offer to babysit or help a mom find respite care. “The Care.Com Team” provides a list of caregivers who have experience working with special needs children. Watch for signs that a family is becoming to isolated. Sometimes being in the trenches, we might not realize how bad things have gotten. During the height of Nick’s puberty period, my in-laws (Jim and Theresa) saw that we were in over our heads. They found some resources and parents to help us find a new path for dealing with the difficult problems we were having. Reaching out and finding support is essential. This can be through a local group like NADS (National Association for Down Syndrome). There are many groups online and through Facebook that I have found to be helpful such as “MyAutismTeam,” “Circle of Moms,” and “Mom2Mom” which has a hotline 1-877-914-Mom2. There are many more listed under my resource page.

Today there is no school so I wasn’t sure how well I would be able to concentrate to do this piece. Nick was up earlier playing his iPod loudly and pushing buttons as I tried to sleep with one eye open. Over an hour later he crawled in bed next to me. Surprisingly, he is taking a page out of his brother’s book, still sleeping in now. 🙂

It’s 11:00am and all I hear is the dull hum of the refrigerator and the sound of my fingers tapping on the keyboard. No iPod or Thomas the Tank Engine blaring, no water faucets running full blast, no phone intercom or microwave buttons being pushed. Just crickets…………

Cheers to all you moms out there and may your Mother’s Day wishes come true. That’s what is in my noggin this week.

~Teresa

Autism, Down syndrome, Recreation/Leisure and Special Needs

Blog #53~Scuba Diving, Really?

Posted on May 6, 2013December 8, 2017 by Teresa Unnerstall

Blog #53~Scuba Diving, Really?

About a month ago I clicked the inbox to purge emails. I spotted one from Nick’s Adapted Physical Education (APE) teacher. Subject: Scuba diving…What the? I laughed picturing Nick strapped down with all that equipment on his back and around his face. I can’t even get him to leave a hat on for more than thirty seconds. I started to hit delete but something made me pause. I skimmed the information and hit reply. “I am not sure this is something that Nick could tolerate. What do you think?”

His APE teacher, Meredith Jordan wrote back. “I think we should give it a try! He really enjoys swimming and has no problem putting his head under water. He has also done an awesome job responding to directions given to him during class. It can’t hurt to try!”

Good point, what did we have to lose? After all, he does love to swim….See Blog #17~Life’s a Beach @https://wordpress.com/post/nickspecialneeds.com/459 for more about Nick’s swimming experiences.

I read through the information, watched an ABC news piece and checked out the website (www.diveheart.org.)

Scuba diving is the only activity in the world that has zero gravity. And the enjoyment of that zero gravity gives people with various physical disabilities a special freedom. Jim Elliot started the organization called Diveheart and has been working with divers with disabilities since 1997. Elliot states that, “There’s a very, very short learning curve in scuba diving with for people with disabilities and without disabilities.” “Diveheart is a nonprofit whose mission is to build confidence and independence in children, adults and veterans with disabilities through the activity of scuba diving,” said Elliot. “We serve all disabilities. Kids with autism and Down syndrome, the vets coming back with traumatic brain injuries, amputations it doesn’t matter. The only thing that keeps you from diving is pressure related illnesses, open wounds and people with seizures can’t go deep.”

Fast forward to last week…. I opened up my laptop and found this in my inbox from Mrs. Jordan. I was stunned!

Here’s what Mrs. Jordan wrote about Nick’s scuba experience…..”It’s pretty cool; I was getting emotional watching him. He did such an awesome job and I was so impressed with how relaxed he was during the entire process. He followed their instructions without any hesitation. I would definitely recommend trying this again possibly with the same organization. The Diveheart instructors used verbal instructions for Nick. They did show him how to open his mouth wide to get the breathing piece all the way in. They thoroughly explained to him everything they were doing. They did not use visual pictures at all. I had a peer partner in the water with him assisting the instructor. The instructor did have to hold the breathing piece in his mouth for a while until Nick realized he had to hold it. Once he got the hang of it he did not want to come up! He was SO relaxed the entire time. They had pretend fish/water toys in the water and Nick LOVED diving for them! Needless to say, he did not want to get out of the water. He was in for about an hour!”

Look at my frogman go :)….

Diving for toys…..

Sometimes I have to remind myself not to set limits on Nick. Mrs. Jordan was right, it can’t hurt to try. Thank you Mrs. Jordan and Diveheart! 🙂 I am very grateful for Nick to be given this opportunity. I would never have thought to try something like this. Lesson learned, sometimes you have to *Think outside the box.

That’s what is in my noggin this week. 🙂

~Teresa

*Thinking Outside the Box according to The Phrase Finder means to think creatively, unimpeded by orthodox or conventional constraints. It originated in the USA in the late 1960s/early 1970s. It has become something of a cliché, especially in the business world, where ‘thinking outside the box’ has become so hackneyed as to be rather meaningless. The ‘box’, with its implication of rigidity and squareness, symbolizes constrained and unimaginative thinking.

Autism, Behavior/ ABA, Education and Special Needs, Feeding, Personal Hygiene, Toileting, Tech Stuff/Apps and Video Based Instruction

Blog #52~ Tech Time

Posted on April 29, 2013October 3, 2013 by Teresa Unnerstall

Blog #52~Tech Time

A few weeks ago at the National Association for Down Syndrome (NADS) Retreat the guest speaker did a presentation on using video based instruction and mobile technologies to support learners with Down syndrome and other developmental disabilities. Toni Van Laarhoven, an associate professor in the Department of Special and Early Education at Northern Illinois University (NIU) gave us some great information on how to implement it.

Video modeling for can be used for teaching a variety of social, academic, and functional skills. In the April 2012 archives, Blog #5~Ready, Set, Action, I wrote about how effective these have been in teaching Nick a variety of job skills. He learned how to unload the dishwasher, load the washing machine and how to use the vacuum cleaner.

Before video modeling we used social stories. Basically this is like a script that you want the child to follow. With Nick also having autism, it helps him to see it in picture form so he can better understand. Nick has a thing for sneezing right in your face on purpose. His teacher made this social story, here is part of it…….. aaaaachoooooo 🙂

These visual supports were effective, but his interest level when reading social stories was nothing compared to when he started watching the video models.

Here are a few ideas I came up with for video modeling:

Teach a job skill

Teach a fine motor skill (cutting food, buttoning a shirt, pour milk, handwriting)

Teach a gross motor skill (swimming strokes, riding a bike, yoga positions.)

Grooming routines (brushing teeth, washing face, dressing.)

Bedtime routine

Change in routine (picture day at school, new curriculum unit in P.E., new school)

Visit to doctor, dentist, blood draws, and haircuts

Trip to the zoo, baseball game, mall, movie theater

Appropriate leisure activities to do at home (watch a movie, computer/X-Box)

Teach social skills (playing games with peers, turn taking)

It’s best to choose one behavior or skill to work on at a time. Have the child watch the movie before engaging in the activity on a consistent basis. For a job skill, many students have a video on their hand held device (iPod) and can follow the prompts as they work. Ultimately, using video models can foster greater independence.

Shooting the videos can be done using an adult or peer model going through the sequence. Simple verbal prompts should be provided. For example, for pouring milk you can script it like this.

Go to cabinet and get a cup.
Go to the refrigerator and get milk.
Open cap and pour milk in cup.
Put cap on milk.
Put milk container back in the refrigerator.

Another way to use video modeling is to make a video resume. Toni made one of her sister who has significant disabilities. This video showed in detail her routine. The narrator pointed out specific details, likes, dislikes that added clarity to how she navigates her day. This would be extremely helpful for a new staff, teacher, and direct care provider. A few years ago, Toni’s NIU students put together a video resume of Nick called Project MY VOICE. Like Toni’s sister, his showed what he did at school, his likes (music, community outings, etc..) and pointed out things that might upset him (saying “no” to him, changes in schedule, etc…) Nick was very proud to show the video at his IEP meeting that year. 🙂

There tons of programs and apps that are available for assisting persons with special needs. Here are just a few that have been recommended to me:

*Follow a schedule with Picture Scheduler:

*iPrompts- Visual support, schedules, picture prompting for autism and special education.

*Artiks Pics-Vocabulary flashcards, memory games

*www.autismspeaks.org/autism-apps

*First Then Visual Schedule:

*ABA (Applied Behavior Analysis) and educational apps:

Alphabet Tracing:

Sensory Fun, Light Box App:

Silly Fun, Talking Tom 2 (Nick’s going to love this one. Tom just cut one here, stinky) 🙂

The list goes on and on, you get the idea. There’s an app for just about everything.

Video based instruction, using mobile devices and prompting systems are effective tools in helping our kids navigate their world to become more independent. Put the power in their hands! That’s what is in my noggin this week.

~Teresa 🙂

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