Down syndrome – Page 21 – Down Syndrome with a Slice of Autism

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.

Autism, Behavior/ ABA, Education and Special Needs

Blog #49~April is what?

Posted on April 8, 2013April 4, 2016 by Teresa Unnerstall

Blog # 49~April is what?

April 2^nd was “Autism Awareness Day.” Nick and I didn’t wear blue to show support or acceptance. Quite frankly, I forgot. I am down in the trenches trying to keep him from running the faucets full blast, pushing the popcorn button on the microwave and dumping out my cup of coffee all over the floor every single day. Seems to me they should have kicked it off on April fool’s Day. 🙂

April and autism awareness…..

I applaud these gestures. In the October archives (Blog #26~Down syndrome Awareness Month), I posted some pictures of iconic places lit up pink in support of breast cancer and shared some ways to support Down syndrome which is also during that month.

Here are a few light it up blue pictures…..

Chicago lights it up blue…..

The CDC estimates that about 1 in 88 children has been identified with an autism spectrum disorder (ASD), and a study released just last week suggests that number may be even higher. In the Medical Daily article it stated: “A recent government survey as report of more than 95,000 parents in U.S. exceeds previously recorded accounts. Now 1 in 50 schoolchildren between the ages of 6 and 17 are diagnosed with autism. The CDC found that boys are four times likely to have autism than girls which has remained true since it was first discovered.”

An epidemic………

Personally I would like to see the focus on more educational, behavioral supports and other treatment options. What is going to happen to our kids when they age out of the school system? There aren’t near enough employment opportunities, day programs or group homes for this rapidly growing population. In addition, I’d like there to be an easier path to obtain funding through the government.

I have spent the last year writing about Nick in this blog so that you can better understand the way he functions having Down syndrome and autism. I have crawled through the gutter like so many other parents. What I think we all want most is support. We also need understanding and compassion without judgment. That along with a night of uninterrupted sleep. 🙂

Yes my child is loud, try living with it 24/7…..

Yup…….

No, I didn’t change the light bulbs to blue on the porch or add lawn decorations like this person…..

I didn’t go out and get a *puzzle piece manicure. It wouldn’t last anyway with all the cleaning up of stuff Nick has dumped out… April archives, Blog #3~ Getting your Goat for the full list.

But I do have a salon appointment to cover the grays Nick has put in my hair this Friday. 🙂 That’s what is in my noggin this week. I will leave the lighting up campaign for everyone else and Nick with his flashing blue stim toy and blue water bottle… while I try to keep up in his world.

Seeing the world in blue, cool ……

~Teresa

*The puzzle pieces are used to reflect the mystery and complexity of Autism Spectrum Disorder (ASD.) It’s a puzzle that has yet to be solved.

Autism, Down syndrome

Blog #48~Joy and Sorrow

Posted on April 1, 2013April 1, 2013 by Teresa Unnerstall

Blog #48~Joy and Sorrow

Yesterday during the homily at mass the message began with the feeling of true sadness for those who witnessed Jesus dying on the cross. Then just imagine days later what it must have felt like to see the rock pushed way from the tomb and find it empty. But then Jesus reveals himself as having risen and bringing the great message of eternal life. What an array of emotions. The depth in which we experience a range of feelings can be overwhelming. The homily message was this….. Life is like that with the ebb and flow of joy and sorrow.

Rewind 19 years ago to the moment Nick was born. “It’s a boy! Does he have all his fingers and toes?” He did and he was beautiful. He was smaller than his brother and his hair was lighter. He was perfect. 🙂 We were elated! Within ten minutes, they whisked him out of the room for further examination. He was having breathing difficulties. The room became silent.

Like a light switch the emotions flipped from joy to fear. Time ticked away as I sat there deserted waiting to find out if my baby was okay. Cold and alone under a bare sheet and thin blanket, I braced myself. It seemed like forever until the doctors came back with Al. Fear was replaced by sorrow. I saw it all over their faces. I could tell the news was not going to be good. Two words: Down syndrome. These two words would change our lives forever.

I never saw Down syndrome as the end of the world. After a week in ICU, the breathing tube and monitors were unplugged and we were able to bring him home. It was more like entering a different world. Emily Pearl Kingsley wrote this poem about her experience. She has a son who has Down syndrome.

“Welcome to Holland”
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this: When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very, very significant loss. But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland. – Emily Pearl Kingsley

Baby Nick sleeps contently after his christening. See how baggy his white jumper looks with his low muscle tone………

Our trip to Holland, while unexpected was filled with joy and sprinkled with sorrow. There were twinges of jealousy on occasion wishing my child could do the normal things that most children naturally did. But what was much more devastating was the second diagnosis of autism. The trip to Holland took a bad turn to what resembled Siberia. This change in flight plans changed the game entirely. For me, this is when sorrow took over. This new world felt isolated. My son didn’t fit in with the Down syndrome support group anymore. The autism groups all seem to have children who were higher functioning both academically and stronger verbal skills. I felt lost and found myself pulling inward.

Eventually, I plucked myself up, got out of the funk and sought support. Little Friends Center for Autism helped me educate myself and offered trainings to help my son navigate his world better. The National Association for Down Syndrome (NADS) offered a retreat for families with a dual diagnosis. This is where we found parents who “got it.” We all shared similar stories. Some which we dared not to tell anyone else before as it would be too shocking. We laughed and cried as we commiserated. We found a new home.

Right now the days are filled with more joy than sorrow. But like all of us there are times where I feel overwhelmed and sad. I try to remember what saved me. Stay plugged in and ask for help. Always keep the faith that there will be better days ahead. That’s what is in my noggin this week.

~Teresa

This smile brings me great joy…….. 🙂

Down syndrome, Fun Side of Nick

Blog #47~Easter thru the Years

Posted on March 25, 2013April 2, 2015 by Teresa Unnerstall

Blog #47~ Easter thru the Years

I love holiday traditions. Growing up each holiday was filled with many rituals that I carried over with my own family. At Easter, Mom would pull out all the coffee mugs and prepare each by dropping in a tablet out of the Paas egg dye kit.

Our tiny, shaking hands would carefully balance the egg on the wire ring and dip it into the rainbow of colors filled in each mug. I always made one like the Sprite “limon” commercials.

Of course my older brother, Tom would always take one egg and be sure to dip it in every single mug. The end result was a gross, olive hued mess that he was quite proud of.

The next morning we would put on our Easter outfits. After church we would pause for a quick photograph before we started the egg hunt in our backyard. Mom’s handy work as a seamstress is unmatched. Of course, no outfit would be complete without the white, patent leather shoes. Just don’t wear them after Labor day. 🙂

Me and sis in matching dresses my mom sewed. That’s Bo, our Border Collie in the background…

The Easter bunny would leave a basket for each of us filled with plastic, green grass. Mom hated that fake grass. It would get all over the house and she probably cursed it for months afterwards. The baskets would brim with jelly beans, tiny bright colored chocolate eggs and the hallowed Russell Stover filled eggs….

Nummy…..

After raiding the baskets, we would change into shorts and spend all afternoon hiding and re-hiding the eggs.

Years later with my own boys in Houston, I carried on the traditions of dying eggs and Easter egg hunts. Here is the first Easter for Nick who is two months old. I had to hold him up in a coccon because he was so floppy. You can really see the low muscle tone (a trait of having Down syndrome) in his scrawny legs. His brother, Hank (21 months old) looks thrilled to be wearing that stuffy bow tie and suspenders.

Nick just over a year old with Easter Bunny, he’s growing…..

Hank with Paw Paw Tommy and Grandma Babs, all prepped for egg coloring….. Yes I still made the “limon” egg and Hank took over making the gross egg like my brother use to do.

Hank (5) and Nick (3)….

After Texas, we moved to California and still had our holiday rituals….

Easter Morning in California, Nick is getting bigger!

This Easter egg hunt was the following year. We had it out amongst the dunes at Hilton Head Island, SC. with the cousins……

This is the first time that Nick hunted and found and egg on his own. Way to go Nick! 🙂

Since we moved up to the Chicagoland area the egg hunts look a lot different. The egg hunts are usually indoors because the temps are below 40 degrees. Hank and Nick are searching at their grandparent’s house before mass….

Hank scores some eggs! Now where is the shiny, golden egg with the $5 bill in it?

Miss Mellie looks purr-fectly wonderful!

I hope you enjoyed a look back at our Easter traditions and memories with the boys. That’s what is in my noggin this week.

Have a blessed Easter!

~ Teresa

Autism, Down syndrome, Education and Special Needs

Blog #46~A Day in the Life of Nick

Posted on March 18, 2013March 18, 2013 by Teresa Unnerstall

Blog #46~A Day in the Life of Nick

This morning I am prepping for Nick’s IEP meeting to be held at 11:51 a.m. I review all of the progress reports that I requested ahead of time. It is essential to get those reports early so you know what is going on. Plus it saves time during the meeting. I have more tips in Blog #24~Top Ten Things I have Learned While Navigating Nick through School, (located in the October archives). I want to give you a glimpse into the day in the life of Nick’s world at school. What does someone like Nick who has Down syndrome and autism (lacking reading and writing skills) work on in school?

His day starts early, the skies are still dark when the bus rolls up at 6:30 a.m. Most mornings Nick is dragging but when I mention it’s a community day he tends to perk up a little quicker. The first two periods of Nick’s day are called “Life Skills.” The class looks at the calendar, works on dates, upcoming events and the weather. Nick enjoys telling others about the weather and is consistent in picking out the correct icon and working the weather page on his iPod Touch Chat program. After calendar, the students practice yoga. They are following the “Get Ready to Learn Yoga Program.”

This is followed up with reading skills working on IEP goals of community safety words and pictures, computer programs and group news sharing session of current events. On Thursdays there is a cooking unit. Nick loves it and has tried several new foods this year including chili mac, waffles, pancakes, chocolate chip cookies and spaghetti tacos. Now I am hungry! 🙂

Here’s an example of a recipe they use at school for monkey bread…….

Third period is called “Home Maintenance.” During this time Nick prepares a simple snack. He makes a choice using either his picture icons or iPod Touch Chat. He likes Cheezits, pretzels, popcorn, salami and cheese. Here he is able to practice fine motor skills like cutting and opening packages with the occupational therapist. He also works on hygiene skills, (brushing teeth, putting on deodorant and body spray, etc…). For practical information and visual supports about hygiene and dressing be sure to read Blog #22~Grooming 101 (located in the September archives).

Nick takes adapted physical education in fourth period. Units include soccer, swimming, basketball, volleyball, badminton, kickball, adventure education and walking. He really enjoys the interaction with peer buddies in class. Period five is lunch time. 🙂

In the afternoon for periods six through eight, Nick has “Vocational and Community” skill building. Nick is working at job training sites three days a week. These include Tabor Hills (retirement home) and Re-Store (Habitat for Humanity) where is responsible for vacuuming.

His third job is at Adopt (animal shelter) where he removes leaflets from stacks of newspapers for cages. On the other days he has school jobs which include shredding, work bins, rental laundry. Wednesdays I have no problem getting Nick out of bed. It’s community day. 🙂 He enjoys it and is so happy being out and about. The activities include dining out both at fast food and sit down restaurants, mall walking and shopping at Wal-Mart for groceries to use in the cooking unit. Here he works on his goal to pay with a debit card.

Nick trying on sunglasses at the store…… He’s looking pretty fly!

He can manage a grocery cart (with reminders to not purposefully run into items or people)

Ramming speed ahead! You should see Nick barreling through Costco 🙂

That is the day in the life of Nick in high school. His days are filled and structured during the week from 6:30 a.m. until 2:30 p.m. He loves going to school and enjoys the staff (and giving them a run for their money.) That’s what is in my noggin this week.

~Teresa

Augmentative and Alternative Communication (AAC), Speech and Occupational Therapy

Blog #45~Can We Talk?

Posted on March 11, 2013February 23, 2015 by Teresa Unnerstall

Blog#45~Can We Talk?

How does someone like Nick who has Down syndrome and autism communicate his needs and wants? Let me start at the beginning. When Nick was in the infant program he was taught sign language. He would sign “more, all done, yes, no and other basic words.” Using sign language gave him a voice when the low tone of having Down syndrome slowed up his speech.

When he was around 4 years old I began to snap photographs and put them on one of those blue school pocket charts. These pictures included things he enjoyed like juice, Goldfish, Thomas the Train and Barney videos. These worked great and he understood all of them.

In first grade I requested an assessment to see if he would do better with an augmentative and alternative communication device. According to About.com, Augmentative communication is an alternative way to help students and adults with language disorders use expressive language or receptive language. Augmentative communication can be accomplished through assistive technology devices such as computers or hand held devices. Low technology such as picture communication systems can also be used as augmentative communication.

The evaluator came out to the home to try some of the voice output devices with Nick. He just stimmed on the devices, hitting the buttons rapid fire like a DJ scratching a rap record.

The evaluator concluded that it would serve Nick better to use a low tech picture system to help him communicate. She gave me a handful of laminated pictures (goldfish, chicken tenders, pasta, milk, juice and Coke.) They were like rare, gold coins that I treasured. (There was nothing like Google Images back when he was 6 years old.) You either had to snap photographs, cut out pictures out of magazines or beg for icons from the speech therapist. Note that around this time, Nick was also diagnosed with Verbal Apraxia of Speech which further complicated his ablility to articulate. For years, Nick used pictures and sign language to communicate his needs.

Since Nick can’t read or write and his verbal skills are limited, he needs support. What we learned is that someone like Nick who has autism tends to see things clearly with pictures. If he can see it, he can understand it. In fifth grade the school team was trained on how to use the PECS (Picture Exchange Communication System). There is a precise protocol to the system. Once the protocol was followed, Nick made great strides in using the pictures to communicate wants and needs. He finally had a voice! 🙂

The cost of buying the software used by most schools is steep as well. A Mayer-Johnson Boardmaker program can be $400-$800 dollars! However, if you are a parent you can purchase these programs for 1/2 price. 🙂 Also if your CD gets damaged (aka, Nick dropping it from the second floor) they will replace it for no charge. Check with your support teacher, as they should have access to this software and will make any laminated icons you might need for home use. In addition, check with your local library and agencies like Easter Seals to see if they have it available to check out.

Most of the time Nick puts the pictures and icons on a velcro strip and hands it to the caregiver. However sometimes he gets a little more creative. 🙂

“Hey Mom, I’ve laid out my plan for what I want to do now”……..

Poor Kitty, nap interrupted………..

The next re-evaluation came in middle school. The team decided to try Nick on a voice output device. He was given a set amount time to just play and stim on it. But then, he began to understand that the device was to be used to communicate. There are all sizes and the cost for these can be thousands of dollars. Nick’s was around $8,000 dollars. The Dynavox V was the Cadillac of AAC (Augmentative and Alternative Communication) devices that would grow with Nick. This was provided by the school district. We found out later that the Dynavox V had major drawback. It was that it was heavy and bulky.

Dynavox V or as we named it “The Brick”……

After a few years with the Dynavox, We looked into other devices that would be more portable and less obtrusive. We ditched the “Brick” and moved to an iPod touch loaded with a program called Touch Chat. Another popular program is called Proloquo2Go. I like Touch Chat because you can upload your own pictures as well as using theirs. Both programs are excellent. The iPod is protected and enhanced with sound using a case with speakers- (iMainGo Speaker case.)

In essence, it is an electronic version of his PECS communication book. He still needs a lot of practice using it properly without stimming on it. The jury is still out on whether this will take over as his primary means to communicate.

Touch chat screen….

Finding the means to help Nick’s communicate continues to be a work in progress. If he is on the phone with you he might say hi and your name if he recognizes your voice. But mostly he will smile and wave.

He continues to use some verbal speech, sign language, Pecs picture book and the iPod Touch Chat. It’s like walking down the stairs. Sometimes you need to hold onto the handrail and sometimes you don’t. All of these communication methods are his handrail that support and facilitate his speech.

I have learned that there is no perfect way to help with speech. All of these serve him and have their drawbacks. It’s always good to have the backup PECS book in case the batteries die or the device goes for an unexpected dip in the pool. I hope this gives you some insight into the evolution of Nick’s way of talking through the years. That’s what is in my noggin this week.

~Teresa 🙂

Education and Special Needs

Blog #43~Taking the Next Step after High School

Posted on February 25, 2013January 22, 2018 by Teresa Unnerstall

Blog #42~ Taking the Next Step after High School

In a few months, Nick will be walking across the stage to accept his high school diploma. We are not doing the typical things you do for the senior year. No need to reserve the tux or limo for prom. It’s not in the cards to visit any college campuses. And ten bucks says that the hat and tassel are going Frisbee air born as he crosses the stage at the NIU Convocation Center. Question is….. What does someone who has Down syndrome and autism resulting in severe cognitive and speech delays plan to do after high school?

Actually, since Nick has not met the academic requirements needed for a diploma, he will receive a “certificate of completion” upon graduation. He did letter in high school and a look at that GPA.🙂

Once the “certificate of completion” is put on the shelf, we move into the next phase for Nick. The program is affiliated with the school district and called STEPS (Supported Training Experiences Post-Secondary). Under the *IDEA law, a student with special needs may continue with high school or enter a transition program up until they turn 22 years old. The decision for placement is based on the child’s individual needs. Students with developmental delays may benefit more by having extra time to work on vocational, social/leisure, self-help skills along with their educational training. Many students who are higher functioning academically may be able to take college courses and have paid jobs. Last week we had the opportunity to visit the campus and get a closer look at the STEPS program. Al attended the first session. I followed up with Nick since we had to do a team tag with him and went to the second session geared for graduating seniors. While we waited for the second meeting, Nick and I took a tour of the building. By the way, all but one fire alarm is not covered but I bet it will be soon.🙂 He loved the campus, especially the sensory room.

So here’s what I learned about the next phase for Nick. The STEPS program is designed to build a bridge between school life and adult life. The focus is to identify what services are needed and what linkages need to be made to help your child be successful in adult life. The questions not to ponder are as follows:

1. What does Nick need to connect to the next level of adult life?

2. When finished with public school, what type of work will Nick be involved in (paid job, volunteer work?)

3. Will Nick participate in a vocational and/or life skills day training program or enroll in a degree-seeking program?

4. Upon completion of public school what arrangements need to be made for independent living (community activities, living arrangements, sports and recreation, transportation, healthcare, financial support, emotional support)? How do we plan to access them? What supports are needed?

So the task at hand is to figure out what Nick is good at and also what he likes to do. From there we work with the team to build a program with this in mind. The three main areas are educational and vocational training along with building his independent living skills. Each classroom has a function in the building. There is a kitchen to work on cooking skills. One classroom is built around vocational skills (with can crushers, shredders, work bins, and the campus micro-enterprise that includes making note cards and beaded jewelry.) A current STEPS student has her own business making beaded jewelry. Check it out at http://www.specialsparkle.com! Another room is for fitness and recreation filled with music, a Wii gaming system and comfy couches. There is also a sensory room along with a few others that are used for academics and working on self-help skills (like time management, money handling, riding public transportation, etc…) Again, the program is centered on the individual their goals and getting them to that place by the exit date which is the day before their 22^nd birthday. I should add here that some students exit earlier if they reach a place where they are working independently at a paid job.

So Nick will have new jobs next fall and opportunities to do community service along with social functions (clubs, dances, bowling, etc…) It looks much like what he is already doing in high school but more laid back (no school bells, the students manage their own schedules.) Looks like I will need to get an app for that.

I felt better after seeing the campus and visiting with the staff. Amazing how the anxiety level goes down when you can actually get a visual of what lies ahead. Now all I need to do is answer all those questions above, yikes! Maybe I’ll go make a cup of tea and mull over it. I’ve got a few weeks until Nick’s IEP meeting. 🙂

That’s what is in my noggin this week, stay tuned maybe I’ll have some answers by mid-March!

~Teresa

*From Wikipedia: The Individuals with Disabilities Education Act (IDEA) is a United States federal law that governs how states and public agencies provide early intervention, special education, and related services to children with disabilities. It addresses the educational needs of children with disabilities from birth to age 18 or 21^[1][2] in cases that involve 14 specified categories of disability. In defining the purpose of special education, IDEA 2004 clarifies Congress’ intended outcome for each child with a disability: students must be provided a Free Appropriate Public Education (FAPE) that prepares them for further education, employment and independent living.^[3]

Under IDEA 2004:

Special education and related services should be designed to meet the unique learning needs of eligible children with disabilities, preschool through age 21.
Students with disabilities should be prepared for further education, employment, and independent living.

Fun Side of Nick

Blog #42~Love, Nick Style

Posted on February 18, 2013February 19, 2013 by Teresa Unnerstall

Blog #42~ Love, Nick Style

Last week over Valentine’s Day I got to thinking about the ways in which Nick shows love, affection and compassion. How can a person having both Down syndrome and autism do so without being able to use many words? I threw the question out there to those who are closest to him. I found some interesting responses along with a few similar, underlying themes about love, Nick style.

love america style

What a great show bordering on naughty for the 1970’s. Anybody remember it? It was must see TV! 🙂

What is love? According to Wikipedia, Love is an emotion of a strong affection and personal attachment.^[1] Love is also said to be a virtue representing all of human kindness, compassion, and affection —”the unselfish loyal and benevolent concern for the good of another”.^[2] Love may describe compassionate and affectionate actions towards other humans, one’s self or animals.^[3]

The famous balcony scene from Romeo and Juliet. 1884 painting by Frank Bernard Dicksee. Courtesy of Wikipedia.….

As Nick’s mom, I feel his love freely with the kisses he gives me. They are cute little pecks on my cheek or sometimes on my shoulder. He gives those to his Dad and brother and even the cat sometimes. I see it in his eyes that gleam when he is happy. I sense it when he offers up his neck for me to blow him some raspberries. I know it when I come home from a long evening out and the icon strip has my picture on it. I see this time again with the picture icons. He will hand me one with his Dad, grandparents, aunts, uncles, brother, teachers and former respite workers like Jess and Mr. T. I know he misses them and wants to see them. The day after my father passed away, he handed me the picture of my Dad on a gloomy, snowy morning in October. I held it and gave him a hug. As I looked out the window fighting back tears the sun’s rays began to peek out behind the clouds.

Al’s parents noticed this too. Here is what Jim and Theresa U. had to say about how Nick shows love. “One thing comes to mind that, I think, is pretty specific. I think when he puts his “icon” on your shoulder or lap, or wherever, it shows that he has trust that you will listen to his request for whatever the icon shows. I also think that the fact he even picks us out in a crowd indicates that he likes us and knows that we like him too and are willing to honor his request. It is a way of getting our attention and showing affection. I think “high-fives” and hugs are a definite sign of affection. Also, he loves to be “kissed” on the side of his neck, too! It’s really not a kiss that he wants but he does come to you for some affection…..in his own way.”

Nick with Gma Theresa…..

Nick’s teacher, Daina Hunt had some interesting insights from the school setting…

“I think Nick has many ways in which he shows his feelings of love, affection, and compassion. Physically, he does a great job by sharing elbows, rubbing noses, high fives, etc. I think that Nick is very affectionate with adults with whom he has built strong relationships. I also feel like Nick’s sense of humor is something that he shares with those he is close to.

I’ve also seen Nick have a “crush” on another student this year. He often picks her when he has to take turns and often watches to see what is going on with her when we are in the classroom. When she becomes upset, Nick will quickly look to her and raise his voice in protest too. Now, I understand that Nick is not a fan of noise made by others, but his reaction to this student is unique.

I’ve seen Nick’s compassion extend even farther to others. He is good at mimicking others emotions, and pointing out emotions (think about the sad egg t-shirt). He also has a genuine side of compassion. I have had staff tell me that Nick has cried after watching others cry.

From my own personal experience, I can say nothing is better than when Nick asks for a raspberry, nose, or elbow. The raspberries and noses may not be totally age appropriate, but it rocks to know he cares enough to share one with me.” 🙂

The infamous “egg shirt”…….poor egg is so sad… 😦

Yes, Nick does like to bond with those he loves by offering his neck up to get some raspberries. Aunt Ali had this to say, “We know how Nick and I bond with our hellos full of raspberries!!! He enjoys receiving as many as I can give! His tender hand touch is always there to say “hi” when we are together and hanging out.” My friend KB agrees, “I just wanted to lip blow in his neck. It makes me laugh as much as he laughs. He loves that kind of affectionate connection! I can say his love is also expressed when saw Sadie or the cats.. Even when you brought him to Petsmart adoption center!”

His aide and respite worker Lara have a special bond, “Nick will sometimes lay his head on my shoulder and then look up at me with a smile and a twinkle in his eyes.”

Sometimes it’s a touch on the cheek like with Grandma Babs, or rubbing elbows or noses. My brother and his daughter Courtney think the *Eskimo kisses are awesome!

Nick with his cousin Courtney…….A new take on kissing cousins 🙂

Here with his Dad as he says, “nose!”

My sister, Aunt Laura has a unique bond that neither time or distance separates. “Nick gives me special things like the “eyes” or Nick might decide that he wants to touch my nose or he will touch elbows with me then if he is in a really loving mood he will give me a very special belly flash.”

Oh yes, the belly flashes. I don’t even know how that started but it did years ago when he was around 3 or 4 years old. There are only a select few that are in what we called “The Belly Flash Club.” My friend Sally is an elite member and recalls it as a sure sign of approval and affection. While cute then, we eventually had to try and wean him off that practice so he wouldn’t come off as a pervert. Well, that was until recently. Here is what Brian his speech therapist had to say, “I’m not sure if you were going to include in your blog Nick’s affinity for flashing his abs as a show of affection. Of course I don’t belong to this exclusive club, but the only two female grad students he has ever worked with are!”

Let me add that these two grad students are young and very attractive. 🙂

So, that is love, Nick style. Hope you enjoyed the unique perspectives. For more about Nick and his special relationships check out Blog #6~ The Nick Connection which is located in the May archives. That’s what is in my noggin this week. Until next Monday, peace, love and belly flashes!

~Teresa

*Eskimo Kiss- According to Wikipedia…..

“In modern Western culture, an eskimo kiss is the act of pressing the tip of one’s nose against another’s. It is loosely based on a traditional Inuit greeting called a kunik.^[1]

A kunik is a form of expressing affection, usually between family members and loved ones, that involves pressing the nose and upper lip against the skin (commonly the cheeks or forehead) and breathing in, causing the loved one’s skin or hair to be suctioned against the nose and upper lip.^[2] A common misconception is that the practice arose so that Inuit could kiss without their mouths freezing together. In fact, it is a non-erotic form of greeting that serves as an intimate way of greeting one another for people who, when they meet, often have little except their nose and eyes exposed.”

Government/Legal Matters Related to Special Needs, Recreation/Leisure and Special Needs

Blog #41~Back to the Future

Posted on February 11, 2013October 3, 2013 by Teresa Unnerstall

Blog #40~Back to the Future

Candles blown out, presents opened and heads resting on pillows. Another birthday week celebrated. It’s was a big one for Al the 5-0 and Nick now 19 years old. Only a day apart separates them. On the night of his birthday, Nick had crashed in his room, but he woke up and crawled in the king bed next to me. I hesitated but pulled the covers up and nestled my cheek next to his. I should have walked him back to his bed, but I wanted him near me. I needed to feel his warmth and hear his breath against my cheek.

Flashback to 19 years ago, Nick was held in ICU under oxygen and monitored. I didn’t get to hold him or nurse him that first night. I barely knew him. Small, helpless, holding on, I had no idea if he would be okay. I wouldn’t be able to put my arms around him that night and it crushed me.

And so on the evening of his 19^th birthday, I took in his breath and felt his limbs stretched long like a mature adult. I gazed at his features, the almond shaped eyes and tiny nose. Similar they were, as if I could close my eyes and transport myself back to 1994. And for a moment I did, to the time when I was in fear for my son’s health and whether he would be okay as the two nuns entered my room to hold hands and pray.

Exhale, I am back to the future. Slapped into what I should face. But I don’t want to. It’s an ugly web that is snagged with red tape. The maze of bureaucracy is daunting. First it was filing to continue to be Nick’s guardian (yes when he turned 18 we had to file to become his legal guardian since he can’t take care of himself.) Second it was to apply for SSI benefits that he qualifies for. Third, when your child turns 19 then you must contact DHS to have them switched from child Medicare benefits to adult. I only found out about this snafu the night before his 19^th birthday, yikes! I still don’t think I have my mind wrapped around any of this.

And on top of this, Nick is graduating high school in May and moving into a transition program until age 22. I can’t say that I am ready to face the future after that. Where will he live? Will he be taken care? Is he going to be safe and happy? I attended a transition fair last week on the eve of Al’s 50^th birthday. I filled up my goodie bag with flyers, free pens, pads, cinch bags and sage advice. I came home and hit the wall, overwhelmed and that is where I stopped; until tonight.

After dinner out with Nick’s grandparents we came home to celebrate the birthdays. It is cold. The heater went out sometime over the weekend. We kept our coats on as we gathered around the kitchen island.

As I lit the candles on the chocolate cake for Nick to blow out, I had a flashback. While we cupped our hands around the steamy cups of coffee I spoke.

“Isn’t this ironic, here we are with no heat in the house. It is just like when Nick was born and the ice storm had knock out the power. We didn’t know what we were doing while Nick lied there in ICU or whether he was going to be okay. And poor Hank was so scared of the fireplace; that’s all we had to heat the house.”

Al pointed out something I had forgotten. “Mom you had the oven and heaters blaring on the stove top to keep it warm, remember?”

Oh how we were lost, Nick in ICU…. No power, and a new diagnosis of our son having Down syndrome…There is more to the story….. But you are going to have to wait for the book 🙂

Back to the present, I sit by the fire writing and try to stay warm. I pictured little Hankie just 19 months old and scared standing at the staricase immobilized, pointing to the fireplace saying, “hot.”

Birthdays bring a time to pause and reflect back and also look to the future. I don’t have any answers on Nick’s transition plan. In a way like Hank, I have been immobilized. I am trying to push the webs out of my face, and walk through but I feel a push and pull. I need to look to the future for my son. He is 19 and like his brother Hank who is 20 and a sophomore at NIU, there is a need to let him spread his wings. But Nick knows no fear or evil. I can’t help but feel like I am the only one who can protect him. That’s what is in my noggin this week. For now I will continue to pray for strength to fight my way out of this tangle.

~Teresa

Baby nick 🙂

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