Tag: Down syndrome

Posted in Adult Day Programs for Special Needs, Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, Education and Special Needs

Blog #145~Hitting Milestones, Moving On

Posted on by Teresa Unnerstall

Blog #145~Hitting Milestones, Moving On

images

This weekend we had a big milestone.  Nick’s brother Hank, graduated from Northern Illinois University with a degree in Marketing and a minor in Communication.  Nick is 22 years old and has Down syndrome and autism.  He recently reached his own milestone, finishing up the Post-Secondary transition program.  Nick now attends an adult day program.  He has a full day with activities including on site activities, community trips, vocational jobs (recycling, cleaning both on site and at a local church), and working a food pantry).  He keeps busy and is very happy in this new program.

IMG_7299

On the way to the NIU campus, we passed by his old high school. I pointed MVHS out to Nick and he instantly replied and signed, “All done”.  My niece, Anna, their Grandpa Jim, and I were astonished.  Nick recognized that he had been there, done that and had moved on.

Nick at MVHS graduation a few years ago, held at NIU Convocation Center…

IMG-20130526-00101

The mood in the NIU Convocation Center was festive.  Nick swayed back and forth in his seat to the music of the steel drum band jamming in the background. I’ve never heard the Pomp and Circumstance played quite like this.  Instead of getting teary eyed as I normally would, it felt more like a delightful celebration.

NIU Steel  Drum Band=Awesome!

NIU-25-300

Nick was very patient and kept quiet through all the speeches.  It was a lovely day, and a proud moment for the whole family. Nick’s Dad was full of pride, as he is an alum of NIU and also a marketing major.

IMG_8532

Nick looks like he is eyeing an alarm in this picture, doesn’t he?  He didn’t pull one on graduation day (whew)!  But, he did get another last Friday at his adult day program site.

counter

Current count=36 fire alarm pulls.

At last, both of my sons are done with school and moving onto their adult lives.  My wish is for Hank and Nick is for them to feel productive, contribute to society, and be happy in all they do.  I am very proud of my guys.  It was a good day at sea.  That’s what’s in my noggin this week.

~Teresa

Follow Nick:

scan0016

Facebook @Down Syndrome With A Slice Of Autism

instagram-logo#nickdsautism

pintrest@Down Syndrome With A Slice Of Autism

 

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

Mother’s Day Break

Posted on by Teresa Unnerstall

Mother's Day

Mother’s Day Break

I hope that everyone had a wonderful Mother’s Day.  This week, I am giving myself a break on posting a blog.  My son Nick, has Down syndrome and autism and is 22 years old.  He is doing great in his adult day program.  Well, except for one thing. Yes, the spell has been broken.  But, he did manage to make it 3 full months without pulling a fire alarm.

firelite-pull-station

Current fire alarm pull count=35 pulls since third grade

counter

It’s Nick’s world, the rest of us are just trying to keep up!  That’s what is in my noggin this week.

~Teresa

Follow Nick:  (See what he’s doing with a mallet)

scan0016

Facebook @Down Syndrome With A Slice Of Autism

pintrest@Down Syndrome With A Slice Of Autism

instagram-logo#nickdsautism

 

 

 

Posted in Down syndrome, Dual Diagnosis Down syndrome and autism, Resources for Special Needs

Blog #143~Count it All Joy Life’s Lessons from a Child with Special Needs

Posted on by Teresa Unnerstall

Blog #143~Count It All Joy Life’s Lessons from a Child with Special Needs

This week I wanted to highlight a book I just finished reading.  The book is titled; Count it all Joy- Life’s Lessons from a Child with Special Needs by Kathleen Murray, PhD. 

count it all joy book

Count it All Joy chronicles Kathleen Murray’s candid account of her inner struggles after learning about her son’s diagnoses of Down syndrome, autism and a congenital heart defect.  Her book is a testimony of the life lessons her son, Christian has taught her.  Lessons that she may have not learned had it not been for what many others consider his disabilities.

Each lesson has a heading such as “Doors,” “Heart”, and “Worry” that opens up a different world of caring for a child with special needs.  These lessons are paired with spiritual quotes from scriptures that complement the journey and ultimately the transformation towards unity, happiness, humility and ultimately unconditional love.

Her desire to tell her stories is to let parents and caregivers of a child with special needs know this:  “It’s not going to be okay; it’s going to be better than okay-much, much better!”

In Lesson 3 “Doors” she felt the emotional doors shut immediately upon Christian’s birth.  The doctors could hardly look her straight in the eye, as they delivered the news that he had Down syndrome.  Negative images came into her mind, like he won’t go to college; instead he will pack groceries or wipe tables.  I certainly recall the same scenario when my son Nick was born 22 years ago.  Nick also has Down syndrome and autism.

In Lesson 4 “Locks”, Kathleen writes about the vigilance of being on constant watch of her son.  This is certainly a common theme when taking care of a child with both Down syndrome and autism.  Elopement is a concern, and a topic I covered in last week’s blog.

In Lesson 6 “Eyes” she candidly describes how she disliked Christian’s squinted eyes when he was born.  Again, those negative images bubbled to the surface on what he may never be.  In this lesson you can see her transformation clearly happening.  It is very moving.

These lessons are honest and filled with struggle, grief, humor and hope.  In Lesson 8 “Mirrors”, there is a letting go of those negative images.  You can feel the shift which turns to joy.  “Christian has given me the strength to see him and see myself as God sees us, without labeling, categorizing, or judging, and with pure, unconditional love reflected in our image in the mirror”.  

I appreciate these lessons and can attest to the fact that my son Nick has taught me so much about life and love.  I’m a much better person because of Nick.  Yes there have been struggles, but finding the joy out of them is the most powerful message of all.  Count It All Joy would make a wonderful gift for Mother’s Day.  Signed, personalized copies are available from Dr. Murray by email (kathleenmurray1000@gmail.com) or online at WestBow Press, Amazon, or Barnes & Noble. 

Kathleen puts it perfectly, “Choose joy in the face of challenging circumstances in order to live a life of contentment and hope”.  The flower can emerge from the icy ground.  And yes, it is going to be “better than okay, much, much better!  That’s what is in my noggin this week!

~Teresa 🙂

Follow Nick:

@Down syndrome With A Slice of Autism-

Facebook

pintrest

instagram-logo#nickdsautism

 

 

Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, Parenting Special Needs, Uncategorized

Blog #141~Managing Stress as a Special Needs Parent

Posted on by Teresa Unnerstall

Blog #141~Managing Stress as a Special Needs Parent

Let’s face it, parenting is stressful.  Being a parent of a special needs child adds even more stress.  It’s a constant state of being on call 24/7, 365 days of the year.  I have been in this state for 22 years with my son Nick, who has Down syndrome and autism.

This weekend, we attended the National Association for Down Syndrome (NADS) retreat.  It is an opportunity for Nick to have fun swimming, playing and doing music therapy.  We’ve been going to this twice a year for the past 11 years.  It is a great group of folks who get it.  You see we don’t fit in to either the Down syndrome support groups or the autism groups.  But at this retreat, we all can openly discuss the unique problems of raising a child with a dual diagnosis of Down syndrome and autism, in addition to  behaviors associated with ADD,ADHD and more.

Nick 2 (2)

At the NADS Down Syndrome and More retreat http://www.nads.org/, Dr. Louis Weiss did a presentation for the parents about taking care of yourself.

He identified areas in our lives that we nurture or neglect:

*Health (mental/physical)

*Relationships (partner, kids, family, friends)

*Work

*Play

Dr. Weiss emphasized the importance of finding your oasis.  How do you recharge your batteries?  What do you do to relax?

relax frog

It is critical to avoid the traps of maladaptive coping for stress with such things as excessive use of drugs/alcohol, sleeping, overeating, withdrawing/avoiding, becoming over-controlling or compulsive (too much screen time or games like candy crush).

Instead, use adaptive coping strategies to restore calm, get centered and refuel.

relax

Adaptive Coping Strategies:

*Mindfulness Practice

*Meditation

*Prayer

*Exercise, eat well, get enough sleep

*Journaling

*Hobbies (gardening, reading, sports, knitting,etc)

*Use organizing techniques for schedules, tasks, etc.

*Support groups (both in person and online)

*Utilize community resources

*Delegate responsibilities and rebalancing the division of tasks

*Setting limits and sticking to them

*Asking for help. Identify sources of support, including professionals.

Taking care of yourself means taking time for you, and doing so without guilt.  Just like the flight attendants demonstrate, put that oxygen mask on yourself first before you place the one on your child.  And you will both breathe a little easier.

oxygen mask

That’s what is in my noggin this week.

~Teresa

Follow Nick:

Facebook @Down Syndrome With A Slice Of Autism

pintrest@Down Syndrome With A Slice Of Autism

instagram-logo#nickdsautism

 

 

 

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

Blog #140~Home Chores and Your Special Needs Child

Posted on by Teresa Unnerstall

Blog #140~Home Chores and Your Special Needs Child

I was doing a little spring cleaning the other day.  I ran across a nice checklist of housekeeping activities to foster independence and build confidence.  My son, Nick is 22 years old and has Down syndrome and autism.  He takes great pride in doing his chores around the house.

Nick watering plants

One of Nick’s strengths is remembering where things go.  He does a great job unloading the dishwasher and putting the dishes away.  Other jobs he has are recycling, emptying the garbage cans, laundry.  He also assists with cooking along with his all time favorite, vacuuming!

Nick cooking

Here is the checklist of housekeeping activities:

Household chores checklist

I definitely see a few more on this list to add into Nick’s routine (except for #24).  Giving your child opportunities to help around the house is so important.  These jobs are the prerequisite which will lead to more independent living when they become young adults.  These skills may take longer to master.  With that in mind, it is helpful to use prompts.  Model the behavior, use hand over hand technique and visual icons/video modeling to help learn the sequence.  Set a regular routine where the chores would normally be done during the day and evening.

Nick vacumming_Tabor Hills (3)

Nick is happy to help out and beams with pride when I say, “Good job big guy” (followed by an elbow bump)!  As adults, we all like to be complimented for doing a good job.  Our kids and adults with special needs are no exception.  Pick a household task and give it a try with your child; never set limits.  You’d be surprised at what they can accomplish, and help you out in the process.  That’s what is in my noggin this week.

~Teresa

Follow Nick:

Facebook @Down Syndrome With A Slice Of Autism

instagram-logo#nickdsautism

 

 

 

 

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

Blog 139~World Down Syndrome Day 2016

Posted on by Teresa Unnerstall

Blog 139~World Down Syndrome Day 2016

wdsd2016

Today is the United Nations official recognition of World Down Syndrome Day (WDSD)!   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.”

trisomy 21

“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” Courtesy of Wikipedia

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.  My son, Nick is 22 years old and has Down syndrome (Trisomy 21) and autism.  He has touched more lives than I could have ever imagined.

IMG01

Events to raise public awareness to create a single global voice are listed on their website: www.worlddownsyndromeday.org.

Our local support group here in Chicago has been a lifesaver for 15 years. Check out their site, it’s loaded with good information:  National Association for Down Syndrome (NADS) http://www.nads.org.

Nick participating in music therapy at the NADS Retreat….

Nick

NADS is doing a 21 Day challenge.  Click here if you would like donate just $21 @http://nads.us10.list-manage1.com/track/click?u=9922ff656d4cb30bb58c685cc&id=26f657228a&e=9cb0029bf5

How does the future look regarding research and Down syndrome?  LuMind Research Down Syndrome Foundation leads the charge in cognition science and research http://www.lumindrds.org:

Their mission is to stimulate biomedical research that will accelerate the development of treatments to improve cognition, including memory, learning and speech for individuals with Down syndrome so they can:

*Lead more active independent lives

*Participate more successfully in school

*Avoid early onset of Alzheimer’s disease

In the U.S., there are 250,000-400,000 persons with Down syndrome and these individuals are 3-5 times more likely to develop early-onset Alzheimer’s disease. Despite these numbers, there remains a great need for pharmacologic therapies to improve learning and behavioral challenges, as well as the increased likelihood for Alzheimer’s disease in persons with Down syndrome.

Today,  LuMind is hosting a virtual run fundraiser. In addition, there are other opportunities for runners to raise money towards this cause.  Click here for more information: http://www.lumindrds.org/ . Follow them on Facebook @LuMind RDS

Happy World Down Syndrome Day from Nick!  He’s an awesome guy.  The future looks bright and I look forward to sharing more about his journey. Thank you for reading and sharing WDSD 2016. Has someone with Down syndrome touched your life? I’d love to hear about it. That’s what is in my noggin this week.

~Teresa

Nick in the Diveheart Scuba Program, never set limits….

Diveheart 2013 336

Follow Nick:

Facebook @Down Syndrome With A Slice Of Autism

instagram-logo#nickdsautism

 

 

Posted in Autism, Down syndrome, Resources for Special Needs

Blog #138~10 Sites Featuring Gift Ideas Designed by Persons with Special needs

Posted on by Teresa Unnerstall

Blog #138~10 Sites Featuring Gift Ideas Designed by Persons with Special Needs

I love to go shopping especially when I find unique gift ideas.  So this week, I am super excited to share this list of 10 sites that feature the talents by persons with special needs. 🙂  My son Nick is 22 years old.  He has Down syndrome and autism.  Many of the people on this list have Down syndrome or autism.  I am so inspired by their work and can’t wait to add some of these to the cart…..

10 Sites Featuring Gift Ideas Designed by Persons with Special needs:

http://papercloudsapparel.com/ T-shirts, hats and totes designed by artists with special needs

nick fire truck shirt

Nick wearing Paper Clouds Apparel “Fire Truck Shirt” designed by artist Justin Lundeen

http://www.christianroyalpottery.com/pages/about  Beautiful pottery (bowls, platters, plates, jewelry) by Christian Royalt

Pottery   christian royal potttery

 

http://specialsparkle.com Kelly designs and makes fashionable jewelry

http://www.brownbearproducts.com/ Erik Behnke, artist

http://oly-wa.us/dkarts/index.php Dylan Kuehl, artist

http://www.cinnamonsfloridakeysart.com/ Cinnamon Edgar, artist

cinnamon edgar

http://www.inspires2aspire.com/ Cards by Todd Eisinger

http://www.artistmichaeljohnson.com/  Michael Johnson, artist

http://www.Facebook.com/NickBurshArt  Nick Bursh, artist

http://www.simplyadorableblankets.org/ Baby, wedding and stadium blankets

weddingBlk_lrg

I hope you find the work of these artists with special needs inspiring.  Please consider their talents the next time you are looking for a unique gift idea. Let me know if you know of any other talented artists with special needs we can add to this list.  That’s what is in my noggin this week.

~Teresa

Follow Nick:

Facebook @Down Syndrome With A Slice of Autism

instagram-logo#nickdsautism

 

 

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

Tackling Difficulties

Posted on by Teresa Unnerstall

Tackling Difficulties

Sometimes things can get overwhelming. There is so much to do running the household, work responsibilities and taking care of Nick.  My son is 22 years old and has Down syndrome and autism.  This morning, I can’t seem to catch up.  But it was a fun weekend.  Nick went to a graduation party for one of his peers on Saturday. Yesterday was a full day at the NADS Bowlathon.  I tried to start writing but the laundry pile is weighing on my mind.  So rather than write something mediocre, I decided to post one I wrote a couple of years ago.  The message is fitting for this day.

Are you going through some challenges?  Do you need some inspiration to tackle those difficulties?  Take a look at this blog I wrote a couple of years ago:

@ https://nickspecialneeds.wordpress.com/2014/04/21/blog-92one-yellow-hash-mark-at-a-time/

Chad Hymas

Have a great day and go tackle those challenges.  That’s what is in my noggin this week.

~Teresa

Follow Nick:

scan0016

Facebook @Down Syndrome With A Slice Of Autism

instagram-logo#nickdsautism

 

 

 

 

 

Posted in Adult Day Programs for Special Needs, Autism, Down syndrome, Uncategorized

Blog #137~Nick’s Adult Day Program

Posted on by Teresa Unnerstall

Blog #137~Nick’s Adult Day Program

Nick is just about a month into his new adult day program.  My son just turned 22 years old and has Down syndrome and autism.  The month before his 22nd birthday he was attending the program part time.  Gradually we increased his days and hours during the month of January.  This made for a nearly seamless transition out of school to his new location.

The one bug in the whole process has been the transportation piece.  The first try was using a riding service through our county.  This was a fail.  There was a different driver every time, and you had to pay cash $13.50 each way.  The final nail in that coffin was a driver who (as reported by Nick’s job coach), was speeding, weaving in and out of traffic and throwing his leftover lunch out the window.  The next driving service we tried were caring and nice.  However they were never on time and cost way much more money ($27.50 each way) Ouch!  Currently, we’ve hired a lovely gal who is taking Nick in the mornings.  Kelsey has been a godsend.  She said that Nick is the best way to start her mornings. 🙂

Nick in car aid

For the time being, I am picking him up each afternoon.  Ideally, I hope to find another driver or find someone to share carpool duties with as it really cuts into my schedule. Otherwise I’ll paint my car taxi cab yellow. 😀  Stay tuned……

Nick has adjusted well in his new program.  Here are a few snapshots:

Vocational tasks….. (What, he’s not spraying anyone in the eye or drenching a flat screen tv?)

Nick cleaning aid.jpg

Nick relaxing in the sensory room….

Nick sensory aid

In his new program, the group goes out into the community three times a week.  He has already been to the Shedd Aquarium, recycling & food pantry jobs, shopping for cooking supplies and eating out at restaurants. The program also has special days with themes like Elvis Day, soul food cooking, Valentine’s Day party and monthly birthday celebrations.  The staff is caring and they really love what they do.  Nick has been very happy here.

Yes, there have been a few behaviors that have challenged the staff. That’s to be expected.  Nick can spot fresh meat and will test you.  But last week and the follow up meeting, the behaviorist felt these were manageable.  It really helped that the school sent his job coach with him during the transition.  Jodi, was able to help the staff understand these and guide them on how to handle Nick.  So far, he has only got to the cover of a fire alarm. I had my money on him pulling one the first week. 🙂

As Nick’s mom, it warms my heart to know that his days are full, structured, meaningful and that he is happy in his new adult life. That’s what is in my noggin this week.

~Teresa

Follow Nick:

Facebook @Down Syndrome With A Slice Of Autism

instagram-logo#nickdsautism

 

 

 

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

Resources for Down syndrome and Autism

Posted on by Teresa Unnerstall

Resources for Down syndrome and Autism

down syndrome and autism intersect

This week I’ve included a list of some great resources related to Down syndrome, autism and a dual diagnosis of Down syndrome and autism.  Please feel free to share this information.  There is help right here at your fingertips @  https://nickspecialneeds.wordpress.com/2014/02/17/blog-84-resource…drome-and-autism/

DSAwarenessMagnetautism ribbon

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

~Teresa

Follow Nick:

scan0016

Facebook @Down Syndrome With A Slice of Autism

instagram-logo#nickdsautism