Down syndrome – Page 19 – Down Syndrome with a Slice of Autism

Blog #97~ Being Nick’s Peer Partner

Posted on June 2, 2014June 3, 2014 by Teresa Unnerstall

Blog #97~Being Nick’s Peer Partner

This week, I am very excited to share this piece written by Ryan Solomon. Ryan was Nick’s peer partner at Metea Valley High School. The Peer Partner Program operates in conjunction with the Adapted Physical Education Department. It allows selected students the opportunity to provide mentorship to students with a variety of abilities. Ryan’s experience with Nick, (who has Down syndrome and autism) inspired him to write this essay for college consideration.

Essay by Ryan Solomon:

“My application lists my three–‐sport varsity achievements –including all–‐conference and all–‐academic in soccer, basketball and baseball. You might think I’m a competitive, insensitive jock. So, you may find it ironic that I applied to “opt out” of PE class. Two years ago I was selected as a “Peer Partner” with 26 other students to assist special needs students in Adaptive PE. I have thoroughly enjoyed the experience – especially last year. I’ve learned that I am sensitive and caring from my yearlong association with a person that has had a significant influence on me, my “Best Buddy” Nick Unnerstall.

Nick is severely mentally challenged and barely able to speak. Last year, when I was “peer partnered” to swim with Nick, I was afraid it would be a daunting task. Before we met, I expected to see a sad child scared of the school’s enormous swimming pool. Instead, when I got to the pool, Nick, wearing his floaters, jumped in fearlessly. We swam together the entire period. The look on his face was refreshing–‐full of curiosity and wonder. His smile beamed ear to ear. The instructor thought it would be difficult for me to handle Nick daily -from preparing to swim, swimming and getting him to class –but that was not the case! Her concerns disappeared as Nick and I bonded nearly instantly. We showed up excited to swim every day. Swimming was the one thing that Nick looked forward to each day.

After class I’d help Nick to lunch. We’d just smile even though no words were shared. Simple motions and expressions allowed us to communicate. This daily routine put my life into perspective. I used to think it was tough having homework and a game on the same night; dealing with a sports injury; or getting caught up with drama among friends. None of this compares to what Nick goes through every day and for the rest of his life.

Through Nick, I’ve learned to appreciate all that I am able to do and have learned not to take anything for granted. Before Nick, I believed I deserved starting positions in sports, or recognition and respect from my peers regardless of my actions. I put myself in his shoes and can see the adversity Nick faces each day from trying to be understood to struggling to get down the hallway crowded with students. I now realize no one deserves anything without hard work. Although I believe I work hard athletically and academically, it does not compare to the Nick’s challenge to speak or get in and out of the pool. Now, I work hard at being a compassionate and caring person.

Because of Nick, I am thoughtful of what I say and do. I have become much more aware of those around me. Nick shows me there is more to my life than academics and athletics. With Nick and Peer Partners, hard work, compassion and caring helps me help others.”

Ryan and Nick 🙂

Reading this essay warmed my heart. As his mom, it is wonderful to know that Nick has made a difference in Ryan’s life and no doubt many others. Ryan just finished his sophomore year at The University of Illinois. I would like to thank him for sharing his story of working with Nick.

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

~Teresa

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

Blog #96~ Best Buddies Program

Posted on May 19, 2014December 12, 2017 by Teresa Unnerstall

Blog #96~ Best Buddies Program

Spring is in the air! I scrolled the Facebook wall over the weekend admiring all the beautiful gals dolled up in their prom dresses and the young men looking so handsome in tuxedos. It’s a rite of passage for high school students, but one that my son Nick never had a chance to experience. Nick has Down syndrome and autism and the prom just wasn’t in the cards for him. But enter this awesome program called *Best Buddies.

Students like Nick who have intellectual and developmental disabilities are often isolated and left out of traditional school activities. That’s where the Best Buddies program comes in.

“The Best Buddies program fosters one-to-one friendships between students with and without intellectual and developmental disabilities (IDD). Best Buddies helps to create an inclusive school climate breaking thru social barriers at an important time in a young person’s life. This non-profit organization is dedicated to establishing a global volunteer movement that creates one-to-one friendships, integrated employment and leadership for people with IDD. Founded in 1989 by Anthony K. Shriver, Best Buddies has grown internationally from one school chapter to 1,700 middle schools, high schools and college chapters worldwide. Best Buddies has eight formal programs impacting 800,000 individuals both with and without intellectual and developmental disabilities worldwide.”

How did Best Buddies impact Nick’s high school experience? Because of Best Buddies, Nick was able to enjoy a wide variety of extra-curricular activities. Each month the group participated in meetings, community volunteering, parties, and social events such as bowling, going to the movies, out to eat and to local parks. In addition, the group hosted two dances a year.

Nick volunteering at a Knights of Columbus fundraiser……

Nick heading to the Best Buddies Spring Dance……

Nick looked forward to these events and being paired up with his peer partners. I am very grateful for these students who volunteered their time to the Best Buddies program. Nick had a special connection with each of his peer partners. This program truly enriched his high school experience. That’s what is in my noggin this week.

~Teresa 🙂

For more information on Best Buddies: http://www.bestbuddies.org

Autism, Behavior/ ABA, Down syndrome

Blog #94~Advice for Special Needs Moms

Posted on May 5, 2014May 6, 2019 by Teresa Unnerstall

Blog #94~Advice for Special Needs Moms

I’ve been raising a child with special needs for 20 years. My son, Nick has Down syndrome and was later diagnosed with autism. Being a parent is rewarding but also challenging and stressful. Having a child with special needs amplifies things even more. I’ve felt ashamed, exhausted, and frustrated piling on mounds of guilt along the way. With Mother’s Day coming up I’ve been thinking about a few things. What advice would I give to that 33 year old mom back in 1994?

Advice for Special Needs Moms- 5 Things I’ve learned

1. Let go of being the helpless victim. Take back control and commit yourself to action. Ask for help and accept help from family, friends, teachers, therapists, support groups and special needs agencies.

2. Adopt a new attitude when you feel bogged down. How about this mantra? “Today I will do just one thing to move me forward to where I want to be.”

3. Learn from others but set your own course. It’s easy to be overwhelmed when you see other moms trying gluten free, casein free, organic dietary programs, experimenting with essential oils, driving all over town to ABA behavior/OT/PT/Speech therapy programs and recreational activities. Forgive yourself, let go of those feelings of inadequacy.

4. Which leads right into GUILT! Society’s expectations don’t have to be yours. Don’t let anyone pack your bags for a guilt trip.

5. Take time to breathe, pray, meditate, exercise and feed your soul. A rested mind, body and spirit will help you navigate those rough, rocky roads.

Do I follow this advice every day? Hardly, this morning I procrastinated waiting until Nick ran out of his meds before making a doctor appointment. I also threw out a package of moldy hot dog buns buried in the pantry. The floor hasn’t been mopped in two weeks and I sat around like a slug watching this movie for the umpteenth time with Nick yesterday….

Do I feel guilty about it? Not near as much as I use to. The mounds of guilt have been reduced to a few, small piles I step in from time to time.

So, to all the special needs moms out there I wish you a Happy Mother’s Day. Slow down and do something you enjoy. Go have a glass of wine with your girlfriends. Take a day or at least an afternoon to do nothing but fun things you enjoy. Please carry that with you each day as you make your way down that rocky road. That’s what is in my noggin this week.

~Teresa 🙂

Autism, Down syndrome, Feeding, Personal Hygiene, Toileting, Uncategorized

Blog #92~One Yellow Hash Mark at a Time

Posted on April 21, 2014March 7, 2016 by Teresa Unnerstall

Blog #92~One Yellow Hash Mark at a Time

I just finished this book written by Chad Hymas:

Chad had everything, a beautiful wife, two sons and a thriving business. One evening he made a rushed decision to ignore safety in favor of getting home quickly. Chad was anxious to see his baby boy take his first steps. On that day in 2001, at the age of 27, his life changed in forever when a 2,000-pound bale of hay shattered his neck leaving him a quadriplegic.

What follows is the story of how he fought back to gain his independence and ultimately setting a Guinness World Record by wheeling his chair from Salt Lake City to Vegas (513 miles) in 2003.

This was no easy task for Chad. There was some good news. His spinal cord wasn’t severed. He was able to regain important functions and have wrist movement as well as function in his biceps. In the book, he talks about starting out with his “personal Guinness records”. They were the very basic things that most of us take for granted like putting his own shirt on, brushing his teeth, shaving, and even getting his drivers license. Chad overcame unsurmountable obstacles and continues to inspire others with his message on all 7 continents and 38 countries. He did it by letting go of his old ideas of who he thought he would be and reinvent himself.

The quest to set that Guinness World Record was daunting. The first few days went well. But the desert heat beat down on him, leaving his hands blistered and bloodied. He hits a wall, not able to fathom going another six days. His dad tells him to think of it as one day, not six days. He says “Just do one more day”. With his Father’s encouragement he broke down the goal into smaller increments. One day at a time became one mile at time. He was 90 miles away from his goal. But the mile markers seem too far apart. His Dad steps in, “Son, don’t give up. Break down the goal even more. Instead of mile markers, count the yellow stripes in the middle of the road. They come faster. See if that helps.” After eleven days Chad Hymas crossed that finish line setting a new Guinness World Record!

As I read his powerful message, I thought of all the “personal Guinness records” that my son Nick has mastered. Nick is 20 years old. He has Down syndrome and would later be diagnosed with autism. Low muscle tone is a trait of Down syndrome. It affects not only gross motor skills but also chewing and swallowing food.

A very low tone Nick flopping over on his brother, Hank……

My son would not eat textured foods nor would he walk until he was nearly 4 years old. All the tasks to get him there were broken down, just as Chad Hymas did. It took Nick a long time to become independent with dressing, brushing his teeth and shaving. But he has hit all of those benchmark and then some.

I never imagined Nick would be able to do something like scuba diving…

Chad Hymas reminded me of something important. “Shift the focus on what I can do.” His friend and mentor, Art Berg was right, “You and I can do anything anyone else can, if you’re willing to do it differently.” As I continue to help Nick become more independent, I am going to keep Chad in mind and tackle each task one yellow hash mark at a time. That’s what is in my noggin this week.

~Teresa

For more information about Chad Hymas: http://www.chadhymas.com

Down syndrome, Government/Legal Matters Related to Special Needs

Blog #89~ World Down Syndrome Day

Posted on March 24, 2014March 16, 2015 by Teresa Unnerstall

Blog #89~ World Down Syndrome Day

The United Nations official recognition of World Down Syndrome Day is March 21st. “Each year the voice of people with Down’s syndrome and those who live and work with them join together to focus attention on what it means to have Down syndrome and how those with the condition play a vital role in communities across the world.” Click on the site below to view events to raise public awareness to create a single global voice @www.worlddownsyndromeday.org.

According to Wikipedia, “Down syndrome is a naturally occurring chromosomal arrangement that has always been a part of the human condition, being universally present across racial, gender or socio-economic lines, and affecting approximately 1 in 800 live births, although there is considerable variation worldwide. Down syndrome usually causes varying degrees of intellectual and physical disability and associated medical issues. The date for WDSD being the 21st day of the 3rd month, was selected to signify the uniqueness of the triplication (trisomy) of the 21st chromosome which causes Down syndrome.”

The Secretary-General of the United Nations Ban Ki-moon said on 21 March 2012, “On this day, let us reaffirm that persons with Down syndrome are entitled to the full and effective enjoyment of all human rights and fundamental freedoms. Let us each do our part to enable children and persons with Down syndrome to participate fully in the development and life of their societies on an equal basis with others. Let us build an inclusive society for all.”

World Down syndrome Day.org gives this message on it’s website, “People with Down syndrome face many challenges as children and adults which may prevent them enjoying their basic human rights. Many people often fail to understand that people with Down syndrome are people first, who may require additional support, but should be recognised by society on an equal basis with others, without discrimination on the basis of disability.”

Big Guy, Nick 🙂

My son Nick, is a young adult who has Down syndrome. He has so much to offer and has brought so much joy to the world. He’s made me a better person in the process. If you would like more specific information on Down syndrome click here @https://nickspecialneeds.wordpress.com/2012/10/15/blog-26-down-s…wareness-month/

Please help me spread the word about World Down Syndrome this week on social media. That’s what is in my noggin this week. 🙂

~Teresa

Autism, Down syndrome, Education and Special Needs, IEP (Indivdualized Education Plan)

Blog #88~ Parent Tips for Better IEP Meetings

Posted on March 17, 2014July 30, 2018 by Teresa Unnerstall

Blog #88~ Parent Tips for Better IEP Meetings

My 20-year-old son, Nick has Down syndrome and autism. While driving to his IEP meeting last Monday it occurred to me that he only had one more of these next year. With 15+ IEP meetings under my belt, I have learned a lot about how to become an effective advocate for my son. IEP stands for “Individualized Education Plan”. An IEP is done for a student who has special needs. These meetings are held each year to update the student’s current level of functioning, progress and goal planning for the following year. There was a time when I was terrified and intimidated by IEP meetings. Here are some things I’ve learned to make an IEP meeting be effective and run smoothly.

Nick’s senior portrait…… 🙂

Here are my top 10 parent tips for better IEP meetings:

1. Establish communication with all the teachers, therapists, and other key members of the IEP team via email. Send a communication notebook back and forth in your child’s backpack. Attend conferences, open house events and if you can, chaperone at field trips and volunteer in the classroom. All of these things will help to build a relationship with the staff and making you feel more comfortable.

2. Designate one notebook for all meetings, conferences and trainings related to your child. Keep a folder for the current IEP and progress reports. Review these prior to the meeting.

3. After you review your child’s goals, make notes for the support teacher/case manager of what you’d like to see for the upcoming year using an “IEP planning form”. Click on the link at the end of this blog to obtain a form.

4. Request a copy of the IEP draft (including present level of academic functioning, and all proposed goals) to review BEFORE the meeting. Go through this with a fine tooth comb making notes in red ink of any questions you have or things you would like to see added.

5. Learn your child’s educational rights. Click on Wrightslaw link provided at the end of this blog below.

6. Don’t hesitate to ask questions and seek clarification.

7. If you feel unsure or overwhelmed bring an advocate from your local support group or a seasoned IEP parent to the meeting.

8. Keep in mind that according to the law; schools do not have to offer the best, they have to offer what is “most appropriate” for your child.

9. The child should be the center of focus at the IEP meeting. A parent’s dream for their child may not be what the reality is. Keep an open mind to this.

10. You know your child the best. You are a equal part of the team, speak up!

If you have serious doubts or concerns about the IEP, ask to take it home and review it further. You are NOT required to sign it if you disagree or have any uncertainties. You only need to sign that attended the meeting. Put any concerns that you have in writing and returned them to school with the unsigned IEP. You can request another IEP meeting.

IEP Planning Form for Parents:

http://www.greatschools.org/pdfs/2200_21-IEPplanning.pdf?date=3-11-02

Special Education Rights:

http://www.wrightslaw.com

IEP meetings don’t have to be a scary thing. Do your homework beforehand. If you are prepared and keep the lines of communication open, then they can run quite smoothly. That’s what is in my noggin this week! 🙂

~Teresa 🙂

Autism, Down syndrome, Fun Side of Nick

Update~Nick Turns 20

Posted on February 10, 2014February 10, 2014 by Teresa Unnerstall

Update~Nick Turns 20

I can’t believe that Nick turned 20 years old last Friday. It seems like just yesterday that he came into this world.

Nick enjoyed his favorite meal that evening, a big bowl of pasta!

He had a blast at school with a birthday dance party earlier that day. He loved opening his presents. Big guy is convinced that all greeting cards make noise now. Here he is stimming away to the card his Aunt Laura and Uncle Scott sent him.

Last night we went out to dinner with the family. Guess what Nick had to eat? That’s right, another big bowl of pasta. We topped off the evening with a decadent triple chocolate cake! After a evening of gluttony, we settled in to watch The Beatles special.

I have a lot of thoughts floating around in my noggin about the last 20 years, and raising a child with Down syndrome and autism. It’s a mixed bag of emotions~joy, triumph, gratitude, and amusement tossed with fear, sadness, frustration and anger. I’m going reflect for a bit and share at a later date. For now, I will try to get use to the idea that Nick is not a child anymore. Not an easy task given his childish ways. That’s what is in my noggin this week.

~Teresa

Autism, Down syndrome, Speech and Occupational Therapy

Blog #83~Sensory Anchors

Posted on February 3, 2014February 3, 2014 by Teresa Unnerstall

Blog #83~Sensory Anchors

Nick doesn’t play with toys like most kids do. Having Down syndrome and autism has changed the playing field for him. He tends to use many of them to seek out some sensory benefit. For instance, he likes to mound his toys up in one spot…..

Even more fun was piling them on our cat……

The other day he was stacking random objects here and there around the house.

Why do kids with autism, Down syndrome and other sensory related issues play with objects in such different ways?

There are many sensory issues associated with having autism. Their world may get too bombarded with stimulus or feel unpredictable and overwhelming. Finding a way to stay grounded becomes even more of a need when the senses are flooded with too much stimuli. Often a child with sensory issues seeks out comfort in the form of a “sensory anchor” which helps them calm down. These sensory anchors can be a repetitive activity that provides comfort and is soothing for them.

Here are some examples of sensory anchors:

*Lining up toys

*Spinning objects

*Following a line with their eyes

*Sitting in bean bag chair or swinging

*Looking at reflective objects

*Hand flapping

*Rocking back and forth

*Rubbing hands together

*Chewing on sleeves or collar of shirts and other non-food objects

*Smelling things

*Making repetitive sounds with mouth

How many of you have been out in public and notice a person with autism making odd sounds, rocking, or maybe banging on something loudly. These are ways in which they are trying to cope in the world by using sensory anchors. Nick’s include a variety of activities. He often chews on his sleeves and collar of his shirt. Other times he is rocking, hand flapping, and tapping or making sounds with his mouth (that by the way sounds like a cow mooing) 🙂

Nick’s first choice and all-time favorite is tapping a can of tennis balls against his mouth!

Second choice, doing heavy work vacuuming!

I realize that some of these are not acceptable in public, so I try to find alternatives for such occasions. For instance, I will provide deep pressure in the form of hugging to help calm him down. But around the house and in the car, I have to respect his need to do this to help him self-regulate. After all, everyone has some way of doing this whether it’s nail biting, twisting your hair, chewing on a pen, sitting while one leg is fidgeting to stay alert. We all find our own way to decompress after a hectic day, right? What’s your sensory anchor? Music, meditation, exercise, hit the hunting or driving range, X-Box, a bubble bath or glass of wine?

Bottom line, it’s important to provide opportunities for a child with autism and sensory integration issues to get grounded and centered. So if it’s a can of tennis balls, then so be it! That’s what is in my noggin this week.

~Teresa

Autism, Down syndrome

Blog #81~Dreams for the New Year

Posted on January 20, 2014January 5, 2015 by Teresa Unnerstall

Blog #81~Dreams for the New Year

This year I decided on just one resolution. I am going to require more of my self. Oh wait one more……Keep the bird feeders filled up! As I wrote in Blog #79~Reboot 2014, I have a need to start fresh. It’s time to move past the “stuff called life” that got in the way in 2013.

I have to stop making excuses like “I’m too busy to work on my goals and dreams”. So, in all areas of my life I am requiring more of myself. This includes at home, work, writing, personal ambitions and what I expect from Nick (my 19 year old son who has Down syndrome and autism). A good friend of mine gave me a plaque for Christmas which I keep near my laptop. It says this:

“Believe you can, and you’re halfway there.” ~Theodore Roosevelt

I’ve cracked my knuckles; gotten things organized around the house, and feel ready to take on 2014. How about you? What are your dreams for this year? What is going to keep you on track? For me visual cues help, much like the icons that Nick uses to navigate his day……..

My new plaque is a nice reminder to stay on track. All around the house I’ve sprinkled trinkets around for inspiration…….

I know exactly what my sister Laura, is thinking right now. There she goes again, deep thoughts by T!

Nick with his Aunt Laura and Uncle Scott…..

Yes I have a reputation in my family of getting a bit reflective. 🙂

Back to Nick’s world, just what can I do to require more from him? I was thumbing through some files in my organization frenzy recently. I stumbled on a one called “Basic Functional Life Skills Curriculum. I scrolled the list and noted that there many benchmarks he hasn’t met. He still needs help to become more independent in the areas of grooming, dressing, chores, leisure, etc…..

Yes, he’s rocking my high heels while unloading the dishwasher……

I have to remind myself to slow down. I need to let Nick try more of these things on his own with less guidance from me. Take some advice from the guru:

Having a child with Down syndrome and autism means a reliance on a caregiver at all times. I have come to accept this fact, but I am never giving up.

I’m going to require more from myself to help Nick become the best he can be! How about you, what are your dreams for 2014? That’s what is in my noggin this week.

~Teresa

Autism, Down syndrome, Government/Legal Matters Related to Special Needs

Blog #79~Reboot 2014

Posted on January 6, 2014January 7, 2014 by Teresa Unnerstall

Blog #79~Reboot 2014

The New Year gives us a clean canvas to start over. It’s an opportunity to paint a fresh picture. The past year was full of many challenges and changes. I am ready to re-boot and here’s why……

2013 started out good until Nick’s birthday in February.

The heater broke……. We had to bundle up for the celebration….. Here I am with Nick’s grandparents Jim and Theresa….. Brrrrrrrr 🙂

The first task was to tackle the annual report for “Continuance of Guardianship” of Nick. It’s a two page form along with a yearly expense report. As long as you submit this a month before the hearing, there is a good chance it will be approved. Then, you won’t have to appear in court before the judge. So far so good…..but not so fast…….

Bam!!!!!!!!

I got a notice from the State Department of Illinois stating that Nick’s benefits would end on his 19^th birthday. I would have to switch over from the child waiver (94 case) and apply for an adult waiver (93 case). Somehow the PAS agency that I work with failed to inform me ahead of time. The application process was daunting and the paperwork alone practically killed a whole rain forest. Nick’s funding was lost for several months which meant we had to pay his respite workers out of pocket. It took awhile and a lot fumbling through the red tape but eventually the adult waiver was approved.

See Blog #44 located in March 2013 archives for more about this debacle.

During the course of doing all this, I applied for SSI for Nick. SSI (Supplemental Security Income) is available for persons who have a disability. Nick has Down syndrome and autism and certainly qualified for this aid. The application procedure was straight forward, done online and much easier than the process for state funding. Again, it took a few months and a scheduled phone interview before Nick was able to receive funding. What I have learned through this past year is that you have to stay on top of things when you are managing an adult with special needs. It’s definitely more time consuming to handle his affairs now then when he was younger.

Early spring brought on several upgrades to the house including a new roof and siding. Then in April, the Chicagoland area experienced major flooding. The sump pump couldn’t keep up and the water poured over submerging the basement.

It took several months to get everything back in order. The garage and dining room became the “catch all” in the meantime. One word…….. “Mayhem!”

In May, Nick graduated from high school, what a milestone for big guy!

During the summer the dry wall was restored, walls freshly painted and new carpeting installed in the basement. I was thankful for my in-laws, Jim and Theresa who helped out with putting things back on the walls, shelves and in the bar area. They were instrumental many times helping out in 2013.

Vacation was spent in the Outer Banks, NC, it was just what we all needed. Upon our return, Miss Mellie our beloved cat of 17 years was in poor health. We had to say goodbye to her.

Rest in peace Miss Mellie……

In the fall, Hank returned to Northern Illinois University and moved into an apartment.

Nick started the post-secondary transition program called STEPS, which he will attend until he is 22. During the fall, new carpet was installed in the rest of the house. A fresh coat of paint was put on both the boy’s bedrooms. Twelve years and two boys, uh….. let’s just say they needed a complete overhaul! Carpet installation is quite an ordeal. You have to pack everything up and clean out all the closets much like moving out of a house.

Fresh paint and carpet, sweet! Nick approves……

Within a week after the carpet was put in, Al was scheduled for shoulder surgery. 40+ years of hard core tennis had taken a toll and the USTA Sectionals in August really did it in. The surgery was lengthy and the recovery was painful. The worst is behind him; his arm is out of the sling with 6 months of rehab before he can pick up a tennis racket.

2013 was challenging, painful and filled with many changes. The house is restored and things are nearly put back together. I am ready to re-boot and greet the 2014 with a clean slate. Mostly, I am looking forward to settling down, seeing what the new year will bring, and get back to writing about Nick’s world without interruptions. That’s what is in my noggin this week. 🙂

~Teresa

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