Posted in Autism, Down syndrome, Education and Special Needs

Blog #103~Vocations for a Person with Special Needs

Blog #103~Vocations for a Person with Special Needs

Some 20 years ago when my son was born with Down syndrome, I wondered what kind of job Nick could do when he became an adult. I found myself gravitating to the checkout lines with the baggers who had Down syndrome.  Like a stalker I watched them work and interact with customers.   I’d ask for a carry out so I could chat more and offer up a huge tip.  I found a lot of hope in such moments.

Those dreams were crushed when autism ravaged my son’s mind and body. His speech would not come as it should have.  His behaviors were strange with all the stimming and worst yet, they became unpredictable.  Autism robbed his chance of being the best that he could have been with just Down syndrome.

Hope came back while Nick was in high school. In Blog #57~Community Jobs and Nick,  I wrote about what jobs he held out in the community. The link is @https://nickspecialneeds.wordpress.com/2012/04/17/blog-3-getting-your-goat/

Nick working at Re-Store (Habitat for Humanity)…..

Nick packaging door knobs_Habitat_4 (2)

Nick takes a lot of pride in his work.  Okay so, he might have pulled a fire alarm at his vacuuming job at a nursing home (woopsie).But for the most part he participated well in all his jobs.

Nick working at Tabor Hills 🙂 ………..

Nick tabor hills

Fast forward to the present, Nick finished high school and attends a post-secondary transition program. In this program the students work in house on job skills, are employed in the community, and some take college classes.  While Nick participates in production and vocational work in the school building, he no longer works out in the community.  His unpredictable behavior, especially the fire alarm pulls (30 since third grade) put him at too much risk to hold a job.  Reality has sunk in. 😦

I’m not going to lie. It’s a kick in the gut. The daunting task now is to come up with a plan.  How will Nick occupy his days once the bus stops coming to the door (at age 22)? I reached out to some of his teachers from high school awhile back.  (Originally I planned to make Blog #100 to be “100 Cool Things About Nick” That was way too ambitious and long.)  But here are a few things they sent to me that fit nicely here:

From Mrs. Hunt (his primary teacher and case worker):

Nick has great functional skills! I’ve seen him help with a variety of chores and complete personal care routines better than some typical teens! Nick is a hard worker and loves to vacuum. Nick has a hilarious sense of humor! His laugh and smile are contagious, even when he’s being a stinker- which makes behavior management even tougher. Nick is clever and perseveres. When he’s determined, he’s going to have his way. Elbow bumps- this is how I know who has a good relationship with Nick. His elbow bumps make a person feel awesome.  I love that the last time I saw him, he still gave me one.  I love that Nick is a typical young man at heart- burps and fart jokes so funny.” 

Being silly with Ms. R, his aide in high school 🙂

Devil horns

His vocational teacher, Ms. Stoodley offered up some ideas for possible jobs for Nick: 

  • Dancer
  • Happiness Creator
  • Adult Education Educator (all of us that he has taught and made better)
  • Vacuuming expert
  • Fire alarm Coordinator
  • Siren Director 
  • Professor of Dumping
  • Screw Sorter Assistant

 

I am slowly digesting the fact that Nick may not be able to work in the community. We need to look at his strengths, then create a meaningful day for him where he is productive and happy.  He is a “happiness creator” even in the midst of creating chaos. So yes, there is uncertainty regarding his future.  We have 17 month to figure things out.  Stay tuned……

That’s what is in my noggin’ this week,

~Teresa

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

Blog #102~Special Needs Summer School- ESY

 

Blog #102~Special Needs Summer School~ESY

During the summer months, a child who has special needs may qualify for ESY (which stands for “Extended School Year”).  ESY is usually a half day program which allows someone like Nick who has Down syndrome and autism to continue working on IEP goals.  This benefits the student with special needs by keeping the momentum and daily structure which is so vital.

Nick’s teacher, Andrea Lawler put together a montage of his summer school program. Flipping through the pages of this book made me smile. It also put a lens on all the cool things Nick gets to do in the ESY program.  Take a look……….

Nick’s ESY Yearbook 2014 at Neuqua Valley High School:

Part of our morning routine was our “Morning Meeting.” Here Nick is letting us know that he is happy, however, he usually loved to be a goof and always point to sad! 🙂

Picture1

Nick’s version of yoga! Everyday we did a yoga routine with the “Let’s Get Ready to Learn” program.

Picture2

Who doesn’t love fireworks! Celebrating the upcoming 4th of July with a little fireworks show!

Picture4

Nick thinks this is way cool 🙂

Picture5

Mid-rock, one of Nick’s favorite dance moves. Who doesn’t love a dance party every now and then!?!

Picture6

Enjoying his snack time.

Picture7

Once a week we would go to the computer lab.

Picture8

Bingo game with some augmentative-communication during speech group!

Picture9

Being silly while working in the production room sorting sugar packets.

Picture10

The students went to the production room on Mondays! No fire alarms in the room though. 🙂

Picture11

Watching and listening to our book during reading group. This was Nick’s favorite spot to stand in during group time. He’s doing “elbow” which is his version of a high five.

Picture12

Placing his order during one of our weekly community trips. This trip was to Burger King.

Picture13

Who doesn’t love Burger King breakfast!?!

Picture14

This smile says it all!

I hope you enjoyed a glimpse into Nick’s world at ESY. A BIG thank you to Nick’s teacher, Andrea Lawler for putting together this awesome summer school yearbook.  In addition, I want to thank  all the teachers and aides for taking the time out of your summer break to continue to teach Nick. This allowed me to continue going to work without having to hire respite care. It also kept me from going bonkers with him home all day.  That’s what is in my noggin this week.

~Teresa 🙂

 

 

 

Posted in Autism, Down syndrome, Education and Special Needs

Re-Post~ Back to School Tips and Your Special Needs Child

Re-Post~ Back to School Tips and Your Special Needs Child

Back to School Mom quote

This week’s blog was written as Nick was about to start his senior year of high school.  I am doing this re-post in case some of you missed it or might be new to Down Syndrome With a Slice of Autism.  You can click here to view @https://nickspecialneeds.wordpress.com/2012/08/27/blog-19-back-to-school/

That’s what is in my noggin this week.  Thank you for reading and sharing Nick’s world! 🙂

~Teresa

 

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

Re-Post~Navigating a Special Needs Child in School

Re-Post~ Navigating a Special Needs Child in School

back to school list

It’s that time of year. The stores are stocked with back to school supplies now.  Having a child with special needs can be challenging when dealing with the school system especially with the IEP’s.  This week, I am re-posting a blog I wrote about navigating your child with special needs through the school system.  I have included my own back to school list of things that I have learned over the last 20 years with my son Nick, who has Down syndrome and autism.  Check it out @https://nickspecialneeds.wordpress.com/2012/10/01/blog-24top-10-…through-school/

That’s what is in my noggin this week 🙂

~Teresa

 

Posted in Autism, Down syndrome, Resources for Special Needs

Blog #98~More Special Needs Resources

Blog #98~More Special Needs Resources

How do I even try to come close to topping last week’s blog post?  Ryan Solomon’s story about being Nick’s Peer Partner touched so many people.  This post got 1,750 views (the most ever) on my Facebook Page Down Syndrome With A Slice Of Autism!  🙂 Just in case you missed it, here’s the link, and don’t forget the box of tissues:

@https://nickspecialneeds.wordpress.com/2014/06/02/blog-97-being-…s-peer-partner/

Nick and his Peer Partner Ryan…..

Peer Partners

This week is all about more resources related to special needs.  During the recent NADS Family Behavior Retreat, I lead a brainstorming session to pool together all the resources the parents had.  We put our noggins together and found support in these areas:

*Autism Support and ABA Therapy

*Advocacy and Legal

*Doctors, Dentists and Specialists

*Therapists

*Recreation and Leisure

*Online Support Links

*Toileting and Personal Care

*Tech Support and AAC Devices

*Safety and Wandering Prevention 

Here is what we came up with.  There are many more that are based out of the Chicago area that are not listed below. If you would like those as well drop me a message.  Please note: This is a parent recommendation list.  NADS does not endorse, recommend, or favor any products, processes or services on this list.

Autism Support and ABA Therapy: 

www.easterseals.comEaster Seals offers programs, training and equipment for families

www.theautismprogram.org Autism resources

Advocacy and Legal:

www.SpecialNeedsFreedomGuide.com Free Estate Planning Guide

www.LifesPlanInc.org  Estate planning

www.specialneedsadvocacy.wordpress.com Advocacy for parents

www.specialedadvocacy.orgAdvocacy site for parents and teachers

Doctors, Dentists and Specialists, Therapists (are all Chicago based)

Recreation and Leisure (most are Chicago based but here are a few others):

www.nps.govNational Park Services free camping tent and tools for first time campers

www.discovernac.orgNational Abilities Camp in Park City, Utah

www.thebikerack.com Special needs bikes and bike modifications in St. Charles

www.joniandfriends.orgParent/child camp in Michigan

www.gigiplayhouse.org Down syndrome Awareness Centers

www.icanshine.org Loose the Training Wheels bike camp

diveheart.org  Scuba and Snorkeling for persons with disabilities

www.bigbeadjewelry.com  Special needs micro-enterprise

www.specialsparkle.com Jewelry micro-enterprise run by a young adult with Down syndrome

www.downsdesigns.comSpecialty clothing and jeans that fit

hammertravel.orgTravel opportunities for special needs

Online Support Links:

www.parentcenterhub.org  Extensive information and help with links your state/local agencies

www.behavioradvisor.com/FBA  Behavior support site

www.myautismteam.comNetwork site for parents

www.bridges4kids.orgGreat Resources for special needs families.

www.mayer-johnson.comBoardmaker software

www.teeach.comInformation on TEEACH materials

www.bridges4kids.orgIEP Goal helpful ideas

www.noahsdad.comEnjoyable site highlighting Down syndrome

Toileting and Personal Care:

www.especialneeds.co/diapers-pads-incontinence-swim-diapers.html

www.Theraquatics.com  Swim diapers for child and adults

www.incont.org  Diapers, swim diapers and related products

wetstop.com Bed wetting alarms

Tech Support and AAC Devices:

www.easterseals.orgAssistive tech evaluations and training

www.mydynavox.com Free 30 day trial app available ($29 monthly thereafter)

www.silver-kite.com/touchChatCommunication application for iPod/iPad technology

www.assistiveware.com/product/proloquo2goAugmentative and Alternative Communication

Safety and Wandering Prevention:

www.awaare.org.  Autism Wandering Awareness Alerts Response Education has a comprehensive list of tips, materials and tools.

www.medicalert.org Medical ID bracelets

www.projectlifesaver.org Tracking system located in various cities

www.caretrak.com GPS Tracking bracelets connected to participating police departments

safetynetbylojack.com  GPS tracking device for wrist or ankles

caretrak bracelet

There are more resources and links in Blog #84 and #85 (located in the February 2014 archives). If you have any others please share them in the comment section below. This list (much like Nick’s behavior plan and * painting the Golden Gate Bridge) is never quite complete and always evolving.

Golden Gate Bridge with the family and my niece Courtney when we lived outside San Francisco 15 years ago.  Note barefoot Nick (he would never keep his shoes on back in then)…….

golden gate bridge

That’s what is in my noggin this week. Stay tuned for more about Nick’s world next Monday. 🙂

~Teresa

*According to goldengatebridge.org:  There are a couple of misconceptions about how often the Bridge is painted. Some say once every seven years, others say from end to end each year. The truth is that the Bridge is painted continuously. Painting the Bridge is an ongoing task and a primary maintenance job. The paint applied to the Bridge’s steel protects it from the high salt content in the air which can cause the steel to corrode or rust.

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

Blog #97~ Being Nick’s Peer Partner

 

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 🙂

Peer Partners

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

 

 

 

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

Blog #96~ Best Buddies Program

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.”

Best-Buddies-logo

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……

Knights of Columbus

Nick heading to the Best Buddies Spring Dance……

best buddies 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

Posted in Autism, Behavior/ ABA, Down syndrome

Blog #94~Advice for Special Needs Moms

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?

Joleene Pic

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.

pintrest cartoon

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.

zen

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….

The other guys

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 🙂

Nick Sox game

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

Blog #92~One Yellow Hash Mark at a Time

Blog #92~One Yellow Hash Mark at a Time

I just finished this book written by Chad Hymas:

chad

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.

gwr

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……

scan0007

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…

Diveheart 2013 336 

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

 

Posted in Autism, Resources for Special Needs

Blog #91~Autism Statistics: 1 in 68 Children

Blog #91~Autism Statistics: 1 in 68 Children

As most people know, April is Autism Awareness Month. Just a few weeks ago came the sobering news that 1 in 68 children in the US have autism (according to estimates from CDC’s March 2014 study).

autism 1 in 68

Take a look at how the numbers have increased over the years…..

autism through the years

The new statistics represent a 30 percent increase from the 2012 estimates of 1 in 88 children with autism. Why are the numbers growing so rapidly? Some speculate that it’s because the diagnostic methods which have improved over the years. I find it hard to believe that this is the only reason that the numbers are increasing. According to TACA (Talk About Curing Autism (www.tacanow.org), More children will be diagnosed with autism this year than with AIDS, diabetes & cancer combined. In addition, autism costs the nation over $137 billion per year, a figure expected to significantly increase in the next decade.”

Autism has no single, known cause. There have been numerous studies linking autism to a wide variety of genetic and environmental factors. There have been several studies linking vaccines to autism and many parents who feel strongly that this was the case with their children.

Here’s the bottom line, there is a generation of children and their families who have been severely affected by autism. These children, like my son Nick are growing up and becoming adults.

Nick age 20……

IMG950055

Children and adults with autism are out in the community full force, with even more coming behind us. It’s time for a comprehensive national strategy. We need leadership to help us find answers for causes, treatment, solutions and resources for people who live with autism. We need compassion when we are out in the community struggling with our kids who make loud noises, flap their hands and have knock down drag out meltdowns. Changing the light bulb blue to promote  autism awareness isn’t going to help make things better for the lives of those affected by autism.

light it up blue

It’s time to send a loud message to Washington that the needs of the autism community are growing rapidly and the resources are limited, (not to mention the family bathrooms). I worry that when my son ages out of the school system at age 22, he’ll be stuck on a waiting list because there aren’t enough facilities available for community work, leisure and a secure group home. I am not alone here; there are almost two million others in the country who go to bed each night with the same concerns. That’s what is in my noggin this week.

~Teresa