Category: Down syndrome

Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism

Blog #162~ Horseback Riding Therapy

Posted on by Teresa Unnerstall

Blog #162~ Horseback Riding Therapy

nick-horseback-therapy

Horseback riding therapy, also known as Equine Assisted Therapy, involves interactions with horses for individuals with and without special needs, including those with physical, cognitive and emotional issues.  Hippotherapy is another term used by physical, speech, and occupational therapists to reach their patients on a personal level.

horseback-therapy

There are many benefits such as motor, emotional and sensory sensations that come with riding a horse. Horseback riding gently and rhythmically moves the rider’s body in a manner similar to a human gait, to improve  in flexibility, balance and muscle strength.

At age one, my son Nick was unable to sit up by himself due his low muscle tone, which is a trait of having Down syndrome.

Nick at age one…..

nick-low-tone-high-chair

We had to prop him up in the high chair, so he wouldn’t slide down or slump to either side.  Nick was receiving physical, occupational and speech therapy in his early intervention program.  Shortly after his first birthday, we enrolled him in a horseback riding therapy program.

Person’s having Down syndrome please note:

“Prior to considering hippotherapy as a treatment strategy for your child, it is important that they have current cervical x-rays to ensure the atlantoaxial joint (or C1-C2) is not at risk for dislocation.  Some people with Down Syndrome also may have a condition known as Atlantoaxial Instability — a misalignment of the top two vertebrae of the neck. This condition makes these individuals more prone to injury if they participate in activities that overextend or flex the neck. Parents are urged to have their child examined by a physician to determine whether or not their child should be restricted from sports and activities that place stress on the neck injury.”

In less than nine months, of incorporating the horseback riding therapy, we noticed a vast improvement in Nick’s posture both in strength and endurance.  At first he couldn’t tolerate a helmet as it weighed him down, (as you can see in the first picture of this post).  But soon, he not only wore a helmet, but was able to keep his head upright, along with and sitting up better.

Nick with his brother, Hank, taken nine months after starting horseback riding therapy…

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We decided on horseback riding therapy, initially to help our son gain trunk strength.  However, we soon realized there were many additional benefits that came along with it.  Not only did Nick ride on top of the horse, he also learned how to care for the horse by feeding, patting and brushing them.  This helped to create an emotional bond and opened up new sensory experiences that he couldn’t get in a clinical setting.  Riding a horse helped to wake up the sensory preceptors, making for a fun and motivating experience for him.

Horseback riding therapy was a wonderful experience for our son with special needs. The horses were gentle friends that helped Nick get stronger, build relationships through unspoken communication, and taught him about responsibility.  That’s what is in my noggin this week!

~Teresa

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Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, Fun Side of Nick

Halloween Fun

Posted on by Teresa Unnerstall

Halloween Fun

This week, I’m sharing some of the fun costumes my son, Nick has worn over the years for Halloween.  Nick is 22, and has Down syndrome and autism.  It’s not always easy for a person with special needs to tolerate costumes, much less masks, face paint, or makeup. The sensory issues can get in the way of going, “all out” for Halloween.  Here is some that I’ve come up with over the year for him:

Referee Nick

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I put a spell on you!

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Spongebob Squarepants

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M&M Nick with his brother Hank

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What a cute slice of pizza he is….

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Army man Nick, and his brother Hank

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Toot Toot, this one was made for Nick!

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Pump, pump it up Nick!

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Yee Haw! My cute, little cowboys….

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Yo, what up Nick?

Nick gangsta

It’s possible to find, (or come up with), your own costumes for a child with special needs. We’ve had a lot of fun doing this over the years.  Nick and I wish you a safe, and Happy Halloween.  That’s what is in my noggin this week.

~Teresa

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Posted in Down syndrome

Blog #160~Princess Diana’s Goddaughter

Posted on by Teresa Unnerstall

Blog #160~ Princess Diana’s Goddaughter

October is Down Syndrome Awareness Month.  I’ve been highlighting stories of inspiration and information about Down syndrome.  I ran across an article in People Magazine the other day about Princess Diana’s goddaughter.  Her close friend, Rosa Monckton gave birth to a daughter with Down syndrome back in 1995.  Princess Diana was the person who provided the ultimate support.

Princess Diana and Rosa’s daughter Domenica

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It was Diana who helped Rosa and her family, navigate their new path of having a baby with Down syndrome.  Diana introduced her to doctors, and came with her to all the appointments.  Diana told Rosa, “You just have to believe in her, love her, and I be there with you every step of the way”. 

In the People magazine interview, Rosa shared this about Diana, “She  already had that vision of what  Domencia could be, which I simply couldn’t see”.  Fast forward to present, the vision is reality.  Domenica is thriving at age 21, who attended Chickenshed, a performing arts theatre in London. Diana had recommended would be a good fit, years ago to her.  In addition, Rosa set up “Team Domenica”, a charity that provides continuing education for young adults with learning disabilities to help them find jobs.

Rosa Monckton and daughter Domenica

rosa-and-domenica

This fall, “Team Domenica” opened a seaside café in Brighton, England where Domenica and other peers with special needs, are working. The jobs provide a variety of skill sets, so that every person can reach their full potential.  Domenica is trying everything by working various jobs at the café.  Rosa is certain that Princess Diana would be very proud of what she has achieved.

It didn’t surprise me that even after Princess Diana passed away in 1997 , she continue to inspire her friend, and so many others. I’m certain that Diana is up in heaven smiling down on all of us.  That’s what is in my noggin this week. Thank you People Magazine for publishing this article, (October 24, 2016 issue), and helping to support Down syndrome awareness!

~Teresa

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Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism

Down Syndrome With A Slice Of Autism got a facelift!

Posted on by Teresa Unnerstall

Nick’s world just got a facelift!  Take a peek at our fresh, new look and domain address @www.nickspecialneeds.com.

 Thank you so much  for reading and sharing Nick’s world.

~Teresa 🙂

 

Posted in Down syndrome, Dual Diagnosis Down syndrome and autism

Blog #159~Down Syndrome Sibling Stories

Posted on by Teresa Unnerstall

Blog #159~Down Syndrome Sibling Stories

October is Down Syndrome Awareness Month.  Beauty Exposed, is a brand new book just published, featuring candid stories of life with siblings who have Down syndrome.

beauty-exposed

Chloe Goulding is the 17 year old author that put this book together in hopes of sharing honest stories to encourage families to be encouraged and to expose the true beauty.  She wanted to tell the stories about her own siblings, Charity and Neko, who both have Down syndrome.  In Chloe’s words, “Rather than seeing their disabilities, I see their possibilities and wish that everyone could see what I see.  The beauty is there, waiting to be exposed.”

I first approached Chloe a couple of years ago, when she was seeking stories by other siblings for her book.  My son, Nick is 22 years old and has Down syndrome and autism.  In Beauty Exposed, there are stories from school age, high school/college and adult siblings.  My older son, Hank’s story is included in this book.

Hank and Nick…..

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The stories are candid and personal, sometimes making you laugh and others bring tears to your eyes.  The lessons these siblings learned are woven throughout the book.  Chloe learned to see the possibilities, enjoy the small things, not to give up (as people with Down syndrome have to work 10x harder to walk, ride a bike or talk).

In Beauty Exposed, you get a glimpse into what it’s really like to be a sibling of an individual with Down syndrome.  It can be challenging and yes, sometimes embarrassing. I couldn’t help but laugh at some of the similar stories that reminding me of my son, Nick.  He’s not the only one that is sneaky, clever and charming.  One sister wrote about her brother getting into her room and breaking multitudes of perfume bottles, time and again.  “The little cutie can do damage like a tornado.”  Another brother writes, “He makes our family laugh all the time.  He’s got some great dance moves, and he can sing aloud.  He’s also the king of funny faces, and KNOWS how to charm an audience. 

One of my favorite stories was about Frankie. His brother writes about his own birthday, as it is time to blow out his candles.  “And before I can take a breath, half of my birthday candles are blown out.  For the 14th year in a row.  But it’s okay, because his smile is better than any wish I could ever make.” 

While many stories are familiar with my own son, each contributor brings their own unique perspective.  They have struggled and defended their siblings with Down syndrome.  Yet, at the same time have they’ve experience empathy and learned what love is in a deeper sense.  These stories show that without their sibling with Down syndrome, they would be a very different person.

Reading these stories, I got a sense of just that.  Each sibling learned valuable lessons much earlier in life having been touched by Down syndrome.  Just some of the lessons included that of acceptance, not taking things for granted, perseverance, forgiveness, compassion, patience and most of all, love.  One story written by an Archbishop speaks to this, “Giving and receiving are intertwined.  We never do one exclusively.  In the case of my brother, it is not a cliché to say I have received much more than I have given.”  That is the common thread in Beauty Exposed, and having the extraordinary opportunity to know someone with Down syndrome.

Thank you Chloe Goulding, for exposing the beauty that is Down syndrome. For more visit http://www.BeautyExposedtheBook.com.  The book is available for purchase on Amazon, I’m going to give it 5 stars!  I hope that we can all continue to advocate for those individuals having Down syndrome not only in October, but all year-long.  That’s what is in my noggin this week.

~Teresa 🙂

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Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism

Columbus Day

Posted on by Teresa Unnerstall

columbus-day

We are taking a break this week!   There are many topics of Nick’s world, in the archives to explore:

Safety/Wandering

Behavior/ABA

Down syndrome

Dual Diagnosis Down syndrome and autism

Education/IEP’s

Feeding/Hygiene

Government funding and legal issues

Health Issues and Down Syndrome

Special Needs Resources

Special Needs Parenting

Therapies (OT, Speech, and PT)

Recreation/Leisure

Tech/AAC (communication devices)

The Fun Side of Nick

Thank you for reading and sharing Nick’s World!  You can find us on Facebook and Pinterest @Down Syndrome With a Slice of Autism, on Instagram @ #nickdsautism, and Twitter @tjunnerstall.  See you next Monday for a fresh new blog!  That’s what is in my noggin this week.

~Teresa

 

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

Blog #157~Making Inclusion Work

Posted on by Teresa Unnerstall

Blog #157~Making Inclusion Work

Is inclusion right for your child?  That was the question I addressed in last week’s post.  Inclusion simply stated, means that a student is supported in the general education classroom setting with given supports outlined in the IEP.  The IEP is an Individualized Education Plan, is a document for special education students.  This document identifies how the student will learn, what services the school will provide, and how their progress is measured.  My son Nick, was in an inclusion classroom during his elementary school years. He has Down syndrome and autism, and benefited greatly from the experience.  How do you make the inclusion setting work for your child with special needs?

The Individuals With Disabilities Education Act (IDEA), amended version 2004, does not actually list the word inclusion. The law actually requires that children with disabilities be educated in the “least restrictive environment appropriate” to meet their “unique needs.” The “least restrictive environment” typically means placement in the regular education classroom which typically means ‘Inclusion’ when ever possible. (Source taken from about.com)

The IEP team works with the parents to determine the least restrictive environment and builds the placement around this concept.  What will the child need to be successful in a regular education classroom?   The IEP team and parents should collaborate to identify supports needed.

Classroom Supports:

*Modified Curriculum:  (Regular education teacher and support/case manager) work together to adapt the current assignments for the child.  Make a plan to address what will be learned in the regular classroom, and how will the student will learn that similar information?

visual work board

*Staffing:  Does the child need a paraprofessional (classroom aide)?  What is the ratio? What additional training will be needed?

*Equipment:  Physical environment (modified desk, chair, adaptive equipment/school supplies, sensory supports)

*Assistive Technology:  Communication (Alternative Augmentative Communication “AAC” device, Picture Exchange Communication System “PECS”, Sign Language/Interpreter), or other devices using apps for to navigate schedules and assignments.

alphabet tracing  ipad-touch-chat

*Sensory Breaks: What space will be provided, is there a sensory area in the school?  How will the student request a break (need a break icon, button on AAC device)?  What equipment is needed, (noise cancelling head phones, figit toys, nubby cushion, music, weighted vest or blanket, bean bag chair, swing, trampoline)?

figit toys   nubby therapy cushion

In addition to identifying classroom supports, the team should address these questions at the IEP Meeting:

* What are the student’s strengths, and how do we build a plan around them?

*How does the student learn best?

*What behavior support is needed to help the student learn the best, and operate comfortably in the general education classroom?

Identifying supports needed and how to best accommodate the student will set a good foundation to success in the inclusion classroom setting.  The student will benefit by having access to the general curriculum and build social relationships in this community in the least restrictive, inclusion environment.  That’s what is in my noggin this week.

~Teresa

Follow Nick:

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Posted in Down syndrome, Dual Diagnosis Down syndrome and autism, Education and Special Needs

Blog #156~Is Inclusion For Your Child?

Posted on by Teresa Unnerstall

Blog #156~Is Inclusion For Your Child?

Are you raising or involved with educating a child with special needs within an inclusion setting?  Perhaps you are considering  an inclusion classroom for your child.  If so, then THIS is the book you need to read:

whos-the-slow-learner

Who’s The Slow Learner? A Chronicle of Inclusion & Exclusion, written by Sandra Assimotos McElwee (Outskirts Press) is a great book and and resource on inclusion.   Her son Sean McElwee was born with Down syndrome.  Sean is now 22 years old and is one of the star cast members of the Emmy Award Winning series, Born This Way on A&E.  

Her goal for writing this book was to educate and inspire, while chronicling her son’s education experiences.  In Sandra’s words, “This is not a ‘How-to’ book, but a ‘How we did it’ book.”

What is inclusion?

Inclusion is a term which expresses commitment to educate each child, to the maximum extent appropriate, in the school and classroom he or she would otherwise attend.  It involves brining the support services to the child (rather than moving the child to the services) and requires only that the child will benefit from being in the class (rather than having to keep up with the other students).  Proponents of inclusion generally favor newer forms of education service delivery.

Full Inclusion means that all students, regardless of handicapping condition of severity, will be in a regular classroom/program full time.  All services must be taken to the child in that setting.  

(From Sandra’s book this information was taken from the Wisconsin Educational Council’s Website)

Inclusion not only benefits the special education student, but also the regular education students in class.  It can be highly successful with the right supports, accommodations, modifications and supportive school staff.  From my own experience, I found this to be the case with my son Nick, who is also 22 years old and has Down syndrome and autism.

Sandra offers a wealth of information in this book.  Each chapter begins with all Sean’s IEP goals for that school year.  The book is loaded with great ideas on how to navigate the school system and how/when to reach out for outside help using consultants to advocate for your child.  This was the case when Sean transitioned into intermediate school, where they determined a need to put a behavior support plan in the IEP.  Sandra provides this full behavior support plan in the book as well, which is very beneficial.  Getting outside support for communication and behavior also helped greatly during the adolescent years with my son, Nick. Keeping in the loop with staff and volunteering in the school and classroom is another great way to keep up with how your child is doing in school.

There are so many valuable lessons that Sandra learned and shares about her son’s educational journey.  Many of which I can relate to having gone through this with my son, Nick.  You are not always going to have a school team or some of the members supporting inclusion for your child.  Sometimes it’s the school staff that are the slow learners.  In this book, you can see how Sandra had to advocate even harder during the intermediate and high school years. Unfortunately this was not always a success. But these actions set the foundation, to make it easier for other families to follow.

The book not only contains a wealth of education information, but many funny and inspiring stories on how Sean touched so many lives.  In one story, Sandra gets out of the shower and noticed the unmistakable odor of popcorn being microwaved.  She fully expected to smell a burnt popcorn next, so she hustled quickly downstairs.  To her surprise, Sean had just opened a perfectly cooked bag of popcorn.  She asked Sean what number he pushed?  Sean looked at her like she was crazy, and pointed to the control panel and said “popcorn”.  It turned out that the all the site words Sean had been learning in first grade were working. Sandra didn’t even know there was a popcorn button on the panel.  In this case she, was the slow learner.

Who’s The Slow Learner? is not just for parents, but a great resource for educators, future regular & special education teachers, school administrators and advocates.  This is the first book that chronicles a student with special education needs from pre-school to high school graduation.  It’s a very instructive book that shows a mother’s determination to advocate for the best available resources in not always a cooperative educational system.

I’m sure this book will benefit many considering inclusion for their child with special needs, and the education team that will be providing for them. That’s what is in my noggin this week.

~Teresa

Catch Sean and his family on the Emmy Winning Series, A&E’s Born This Way, Tuesday nights at 9pm (8pm Central)!

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Posted in Adult Day Programs for Special Needs, Augmentative and Alternative Communication (AAC), Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, Recreation/Leisure and Special Needs

Blog #154~Adult Day Program 6 Month Update

Posted on by Teresa Unnerstall

Blog #154~Adult Day Program 6 Month Update

On my son’s 22nd birthday this past February, the little yellow bus stopped coming to the door.  My son, Nick has Down syndrome and autism and has aged out of school.  For the past 6 months,  Nick has been going to an adult day program.  This week I want to share some of the activities he’s been doing in this excellent program at the Keeler Center.

Nick’s adult day program is filled with many fulfilling activities each day.  Mondays are dedicated field trip days.

Here are some of the places Nick has visited in the community:

Shedd Aquarium

Library

Brookfield Zoo

Fabyan Park Japanese Garden

Fox Valley Park District Greenhouse

Phillips Park

Red Oak Nature Center

Art Studios

Fermi Lab

Local restaurants (Noodles & Company, Dunkin Doughnuts, Culvers, Colonial Café, etc..)

In the facility, Nick participates in a variety of activities:

Vocational jobs (cleaning and vacuuming sensory room, recycling, shredding, work  bins, gardening, menu planning, cooking, etc..)

nick vacumming aid

Social circle (News to You, greeting and using AAC devices)

Science projects

Table and bin work

Nick work aid

Arts and Crafts (for art fairs, mothers/father’s day, making cards, painting, etc..)

Recreational (gym activities, yoga, etc..)

Nick yoga AID

Fun Fridays (Holiday theme parties, dancing, karaoke, games, concerts, cookouts, movies, etc..)

Speech therapy (insurance private pay), to work on articulation and using his AAC device

Outside the facility, his group does community recycling, shopping for cooking day as well as volunteer jobs.  One of the sites is at a local church, (stuffing bulletins and cleaning the nursery).  The other workplace is at a food pantry, where they organize and stock inventory, like dried beans, cereal and peanut butter.

Nick recycling

Nick has a full life and rewarding activities in his adult day program. The staff is very dedicated, caring, welcoming and patient.  Yes, patient! Nick’s pulled several fire alarms the last few months.  The behaviorist on staff  has put a plan in  place, and met with the staff to curtail this ongoing problem. Hey, it’s Nick’s world, the rest of us are just trying to keep up. The current fire alarm pull count is now 40 pulls since 3rd grade.

While his speech is limited due to having a dual diagnosis of Down syndrome and autism, I can tell that he is very happy in this program.  How do I know?  When I wake him up in the morning he is excited to get dressed and out the door.  The other day I was driving him and his buddy Josh to the site.  Just before we crossed over the Fox River, Nick started saying “Keeler” with a big thumbs up.  It warms my heart knowing that Nick is happy and contributing to society. That’s what is in my noggin this week.

~Teresa

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Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, IEP (Indivdualized Education Plan), Physical Therapy and Special Needs, Speech and Occupational Therapy

Blog #152~Lessons From Olympian Simone Biles

Posted on by Teresa Unnerstall

Blog #152~Lessons From Olympian Simone Biles

After winning individual gold in the women’s gymnastics all-around on Thursday, Simone Bile’s, in an interview, made a declaration. “I’m not the next Usain Bolt or Michael Phelps,” she said. “I’m the first Simone Biles.”

Simone Biles

Before going to teach spinning class last week, I was rushing around the house getting ready.  Out of the corner of my eye, I caught a glimpse of the Good Morning America interview featuring gold medalist, Simone Biles at the Rio 2016 Summer Olympics.  It struck me that this pint-sized, power house had 4 training tips that packed a lot of punch. I grabbed my coffee, pen and pad to jot down a few bullet points.

Having a child with special needs presents many obstacles in life.  I’ve had my share of them with my son Nick, for the past 22 years.  Nick has Down syndrome and autism.  The low muscle tone (a trait of having Down syndrome) delayed him from reaching gross motor milestones until much later than most babies.  He didn’t sit up until a year old, and he didn’t walk until he was 3 ½ years old.  Nick had to work a lot harder to hit those targets with years of physical therapy.  We’ve also spent 22 years going to speech and occupational therapy to help feeding, communication along with fine motor, sensory issues.

It has been quite a journey, which brings me back to those bullet points I scribbled down.  In the Good Morning America interview, Simone offered up some advice on her training regimen.  They are 4 simple lessons, and my take on they apply to raising a child with special needs:

  1. Enjoy the Ride

The journey isn’t always going to be easy.  It’s going to take a lot of hard work and shedding tears.  And that’s to be expected.  But, find a way to embrace the journey.  Have some fun as you go, and surround yourself with people who make you laugh.

  1. Never Give Up

There will be days, weeks and months where you see no progress.  Sometimes mistakes will be made.  That’s when you pick yourself up and trust that you can do it no matter what.

  1. Trust Your Squad

The fierce five huddled, cheered each other on, and believed in other.  When you have a child with special needs, you have to get a good squad together to help push them to succeed.  This includes the IEP team along with outside therapists.  Huddle in from time to time, and always keep the lines of communication open.  Make sure all the goals and dreams for your child are in sync.  Parents should have their own squad of friends and support groups you feel comfortable with.  Your squad understands the insurmountable pressure faced when raising a child with special needs.

Fab 5 Rio

4. Treat Yourself

After a competition, Simone (whether she wins or not) enjoys pepperoni pizza.  Parents of special needs kids spend a lot more time and energy helping their child reach goals.  It is beyond exhausting. Get a respite worker to watch your child.  Find the things that you enjoy and indulge.  Go out to lunch with girlfriends, get a manicure, go workout, take a trip to Target (alone), enjoy a nap, have a glass of wine.  Treat yourself, you deserve it.

That’s great advice from the 19-year-old Olympian champion.   Life will always have it ups and downs, twists and turns.  But if you can find a way to embrace the journey, you can hit the top of that podium and be the champion of your own life and your child’s.

Nick wins the gold for the softball throw at the State Special Olympics~2003

Nick Special Olympics

 

That’s what is in my noggin this week.

~Teresa

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