Tag: Down syndrome

Posted in Autism, Down syndrome, Fun Side of Nick

Re-Blog~ Halloween Costumes and a Special Needs Child

Posted on by Teresa Unnerstall

Re-Blog~Halloween Costumes and a Special Needs Child

This is a fun look back at some of the Halloween costumes the boys have worn over the years.  Last Friday, Nick (who has Down syndrome and Autism) went gangsta to the school Halloween dance.  Shockingly, he kept the hat and necklace on much longer than I anticipated.

Snoop Nick is in da house……

Nick gangsta

Click on the link below to view more costumes the boys have worn:

@https://nickspecialneeds.wordpress.com/2012/10/29/blog-28-hallow…over-the-years/

I’ve been doing more re-blogs because we’ve picked up a bunch of new readers since launching the Facebook Page, “Down syndrome with a Slice of Autism.”  Plus it’s fun to go back and revisit some of these stories after two years.  That’s what is in my noggin this week.

Happy Halloween!

~Teresa

 happy halloween

Posted in Down syndrome, Physical Therapy and Special Needs, Speech and Occupational Therapy

My Guest Blog~So Your Baby Has Down Syndrome

Posted on by Teresa Unnerstall

My Guest Blog~ So Your Baby Has Down Syndrome

Recently I was contacted by an associate editor at Social Work License Map, a guide to social work licensure that clarifies the steps needed to become a social worker in any state.  This social work site,  also focuses on specific social work advocacy. I am very excited to share that my website, “Down Syndrome With A Slice Of Autism” will be included here.  In addition, I did a guest blog spot which posted live last week.  The guest blog is entitled, “So Your Baby Has Down Syndrome.”  Just click below to view:

http://socialworklicensemap.com/guest-blog-so-your-baby-has-down-syndrome/

October is  Down syndrome Awareness Month and there are so many good stories in the news.  I will continue to post these on the Facebook page for you to enjoy.  Thank you for reading and sharing Nick’s world.  That’s what is in my noggin this week!

~Teresa 🙂

DSAwarenessMagnet

 

 

 

Posted in Down syndrome, Resources for Special Needs

Down Syndrome Awareness Month (Re-blog)

Posted on by Teresa Unnerstall

 

Down Syndrome Awareness Month!

Photo on 2011-06-12 at 18 01 #4

Nick says yay and thumbs up!  October is Down syndrome Awareness Month.  Here is a blog I did a few years ago that will open your eyes to Down syndrome @ https://nickspecialneeds.wordpress.com/2012/10/15/blog-26-down-s…wareness-month/

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

~Teresa 🙂

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

Blog #104~ Parenting and Discipline

Posted on by Teresa Unnerstall

Blog #104~ Parenting and Discipline

I recently was in a conversation with two young mothers of school age children. Both were talking about how much they did for their kids.  One mom commented that her daughter was old enough to make her own bed.  Yet she would do it herself because her daughter did it so sloppily.  The other one talked about scrambling to get the lunches made and double checking to see if all the homework was in their backpacks.  I scratched my head and wondered about this. Why weren’t they using these opportunities to help foster independence in their children?  I think as a mom, sometimes it’s just easier to do it yourself instead of constant reminders and nagging.  But in the long run, this does nothing to teach your child responsibility. Which brings me to my point this week; parenting is not only disciplining your child but also staying disciplined yourself.

When you are raising a child with special needs, it is even more difficult to teach independent living skills. Things take longer to learn with deficits in speech, gross motor and fine motor skills.  The process of putting on shoes and socks can be a ten minute ordeal.  With the bus coming at 7:25 a.m. the morning may not be ideal to use as a teaching moment. But you can carve out chunks of time to practice independent living skills during down times.

My son, Nick is now 20 years old. He has Down syndrome and autism.  Once at a high school conference, his teachers and therapists pointed out how good he was at self-care (in fact the strongest student in the class). I attribute this to three things:

1. Providing those teaching moments to practice skills

2. Using visuals so he can be prompted

3. Staying disciplined in the routine rather than just doing it myself

photo (105)

The most challenging thing I have ever done was getting my son with special needs toilet trained. It is also happens to be the greatest thing that I have accomplished in my life. It was certainly a marathon, not a sprint.  In fact it was the longest and hardest marathon imaginable.  And we stepped in a LOT of poop along the way.

poop icon

When I look back at that road, one thing stands out on how Nick finally got toilet trained. It was DISIPLINE! Yes, I worked with autism specialists, went to potty training workshops and used visuals.  But nothing worked until I disciplined myself to create a timed toileting schedule and stick with it.  This (combined with the fact that Nick finally was mature enough), led to the success of him getting out of Depends and into underwear.  And that was a glorious sight to see. 🙂

It was a long road but we made it to the other side, tada!

IMG04

The importance of staying disciplined as a parent will pay off in the long run. You can’t wipe your child’s bottom forever.  That’s what is in my noggin this week.

~Teresa

Posted in Autism, Down syndrome, Education and Special Needs

Blog #103~Vocations for a Person with Special Needs

Posted on by Teresa Unnerstall

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

Posted on by Teresa Unnerstall

 

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

Posted on by Teresa Unnerstall

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

Posted on by Teresa Unnerstall

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, Physical Therapy and Special Needs, Speech and Occupational Therapy

Blog #100~20 Tidbits about Nick

Posted on by Teresa Unnerstall

Blog #100~ 20 Tidbits about Nick

To celebrate the 100 milestone of this blog “Down Syndrome with a Slice of Autism,” I made a list of 20 things about my son Nick.

Nick 20 years ago, what a little kewpie doll…..

Nick baby

1. Nick was born the day after his Dad’s birthday.

2. Nick was in NICU and on oxygen for one week due to an AV valve in his heart not closing.  Fortunately, this closed up within a week.  He was released from the hospital on Valentine’s Day which was also Ash Wednesday.

Aqua heart

3. Nick started early intervention with speech, occupational and physical therapy at 8 weeks old. They taught him sign language. He worked on a stability ball to build core strength long before it became trendy.

4. Nick was the youngest child to start horseback riding therapy in the early intervention program at age one.

5. We use to prop up pillows on the sides of his high chair to keep him from flopping over to the side, until his core became stronger.

Nick high chair

6. Due to his low muscle tone (a trait of Down syndrome) he didn’t walk or eat solid foods until he was 3 ½ years old.  We did a co-treatment with extensive OT and speech therapy with a feeding specialist using the Debra Beckman feeding technique

7. Nick doesn’t like yogurt or applesauce because I’d mix this awful smelling and tasting Nutrivene Vitamin Supplement into them.

8. To get Nick to pull up to stand, his brother would bounce ping pong balls on the coffee table to catch his attention. I also hung several music toys over the fireplace so he had to pull up to his feet to hear the music. (Hmmmm, maybe that’s why he’s obsessed with pushing buttons.) 🙂

9. Nick has been to the top of the Eiffel Tower and Notre Dame Cathedral.

Nick Eiffel Tower

10. He has been overseas three times including London, France and Spain.

11. Nick can replicate exact sneezes, high and low pitch, big and small ones.

12. He is so flexible that he can sleep with his legs crossed and folded all the way forward.

13. Nick’s a thrill seeker and will sign “more” as soon as a roller coaster ride is over.

14. He hates to wear hat and gloves no matter how cold it is.

Nick sled

Unless he’s indoors :)……….

Nick Winter Ninja

15. Nick’s favorite actor is Eddie Murphy, in the movies The Nutty Professor, Doctor Doolittle, and Norbit.

16. He doesn’t like any fruit at all (except raspberries, that is giving and getting them). He does LOVE salads.

raspberry

17. He won a gold medal in the softball throw event at the Illinois State Special Olympics.

Nick Special Olympics

18. Nick was evaluated for autism at age 5, but didn’t get a formal diagnosis until he was 11 years old.

19. Nick has a thing for dolphins and beluga whales.

Nick Kiss

20. Before the 30 fire alarm pulls, Nick would grab car remote keys and set the alarms off.

Hope you enjoyed the 20 snippets about Nick.  Thank you so much for reading and sharing Nick’s world for the last 100 blogs.   That’s what is in my noggin this week. 🙂

~Teresa

20 Year Old Nick…..

photo (120)

Follow Nick:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

 

Posted in Autism, Down syndrome, Resources for Special Needs

Blog #98~More Special Needs Resources

Posted on by Teresa Unnerstall

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.