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

Blog #140~Home Chores and Your Special Needs Child

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

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

Blog 139~World Down Syndrome Day 2016

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

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Posted in Autism, Down syndrome, Resources for Special Needs

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

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

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

Tackling Difficulties

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

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

Blog #137~Nick’s Adult Day Program

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

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

3 Scary Letters: IEP

3 Scary Letters: IEP

brace yourself IEP

Hey parents, is it time for your child’s  IEP meeting?  Are you armed and ready?  After 22 years with my son Nick who has Down syndrome and autism, I’ve learned a few things.  IEP meetings don’t have to be scary.  Click here to find out how you can be ready for one:

@https://nickspecialneeds.wordpress.com/2012/05/21/blog-8-3-letters/

Please leave me a comment if you have any questions or need support.  I am here to help!  That’s what is in my noggin this week.

~Teresa

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Posted in Autism, Down syndrome, Education and Special Needs, Fun Side of Nick

Blog #136~Nick Turns 22

Blog #136~Nick Turns 22

I got a bit choked up buying these candles the other day.  What is the significance of 22?  That is the birthday in which a child with special needs ages out of the school system and enters the adult world.  My son Nick, has Down syndrome and autism.  Yesterday was his 22nd birthday.

22 candles.jpg

Last Friday was Nick’s last day in school.  They celebrated his birthday and wished him good luck….

22 birthday cake.jpg

Make a wish Big Guy! 🙂

22 wish

Nick had a wonderful experience in his Post-Secondary Transition Program (STEPS).  It was hard to say goodbye.  The cord has been cut, and the little yellow bus made it’s final stop to the door……..

bus last day.jpg

Nick’s birthday celebration continued over the weekend with family at Mr. Benny’s Restaurant in Frankfort. Nick enjoyed a nice steak dinner and another round of singing Happy Birthday.  We celebrated both Nick and his Dad’s (which is the day before his).

22 Nick and Dad

Yesterday (Nick’s actual birthday), we made a run to the border.  Oh happy day! 🙂

22 nick taco bell

Nick had a great time and we thank you all for the well wishes. We look forward to sharing the new adventures that lie ahead.  Nick started his new adult day program full time today. The fire alarm pull count is at 34 since third grade, but for how long?  Cheers to you Nick, for making us smile and keeping our reflexes razor sharp.   That’s what is in my noggin this week.

~Teresa 🙂

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

Blog #135~Final Week in School

Blog #135~Final Week in School

This is Nick’s last week to be in school.  His 22nd birthday is almost here.  Then, the little yellow bus stops coming to the door.  My son Nick, has Down syndrome and autism.  He is aging out of the school system and will enter the adult world.  For the past few months we have been working with his current school and the adult day program he will be attending.  Nick has been at the new program part time for the past few weeks and the transition is going well. All the pieces seem to be in place.

It’s been an amazing journey watching Nick grow and learn.  The times have been joyous and triumphant, while often frustrating and heartbreaking.  Today I want to pause and give credit to all of the teachers, case managers, aides, therapists, bus drivers and school district personnel and respite workers that have helped along the way.

Nick started at the Klein School District (in Texas) at just 8 weeks old.  This early intervention program had a wonderful staff and therapists.  They worked to strengthen his low muscle tone (a trait of having Down syndrome).  When Nick was nearly 3 years old and not walking yet I said to his physical therapist, “I don’t think Nick is ever going to walk”.  To which she replied, “I have never met a child with Down syndrome who hasn’t walked yet”.  And you know what she was right.  Nick did eventually walk at age 3 1/2! 🙂

After age 3, Nick attended the early childhood program at the Arbor School in Houston.  He made so many gains with the combined co-treatment therapies offered by Texas Children’s Hospital.  Not only did he start to walk, he learned how to chew solid food without choking.

We moved outside the San Francisco Bay area when Nick was 4 years old.  I can’t begin to thank the Down syndrome Connection support group along with his therapists, Kendra his Kacy at Learning on the Move.  I learned ways to incorporate a sensory diet for Nick, and how to become an advocate for my son.

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In 2001, we moved outside the Chicago area.  During his elementary years Nick was in a full inclusion classroom.  This worked because of the excellent help provided by his support teacher, along with dedicated teachers, aides and therapists.  It was during this time that Nick’s academic goals shifted to more functional goals in his IEP.  While this was heartbreaking, I remember gaining strength in what his support teacher said.  At the beginning of his IEP meeting in 4th grade Sylvia said,  “Nick has a lot of strengths and we need to focus on those”.

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Nick also began to get private speech and OT at Suburban Pediatric Therapies.  He has learned so much and developed a great relationship with all the staff at this clinic. 🙂

Nick loves to work with Brian…..

Brian and Nick

The middle school years were rough for Nick.  Having the diagnosis of autism along with Down syndrome was a mixed cocktail with a bad taste of frustration (due to lack of speech). This lead to meltdowns and destructive behaviors.  The shift led back to a self-contained classroom.  I don’t think we could have survived this time without the support of NADS (National Down Syndrome Association) and Little Friends Center for Autism.  I learned how to manage the autism component with their help.  Getting support is crucial in a crisis situation as this was.  I also give a lot of credit to his support teacher Jess (aka “The Nick Whisperer”).  She believed in his capabilities, understood him and made the last years of middle school a success.

High school was a self-contained setting.  It was during this time I saw Nick mature and handle his behaviors much better.  He took pride in his vocational jobs both in school and out in the community.  I appreciate all the staff that worked with him and helped him grow during that time.

Working at Re-Store Habitat for Humanity with Ms. R….

Nick packaging door knobs_Habitat for Humanity (6)

Working at Tabor Hills Residential Community…..

Nick vacumming_Tabor Hills (3)

Nick Senior Portrait….

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After Nick graduated from high school he attended a post-secondary transition program (STEPS) where he continued to hone his vocational skills, had work jobs and community trips.  He has enjoyed this program immensely!  A big thank you for the staff at STEPS for helping Nick navigate his jobs, teaching him new skills, working to make his AAC talker device be a success and assisting with the transition to the adult day program he will start full time next week.

Nick on a delivery run job…..

Nick delivery

This journey with Nick has been a wonderful and wild ride, 34 fire alarm pulls and all!   I am grateful to all who have worked with Nick and touched our lives.  Truly, you all have been angels lighting the path along Nick’s way.  That’s what is in my noggin this week. 🙂

~Teresa

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Posted in Adult Day Programs for Special Needs, Autism, Down syndrome, Health Issues and Special Needs Child

Update This Week

Update This Week

Nick had a checkup this morning.  He cooperated for the most part.  Although he wasn’t too thrilled about getting the TB test.  This is in preparation for his transition to the adult day program that I have been writing about the past two weeks.  My son Nick has Down syndrome and autism and will be turning 22 very soon.  As I sat there with him, I thought back on all the times we have been to the doctor.  I am grateful that he has been in good health.  It is truly a blessing.

That’s what is in my noggin this week 🙂

~Teresa

The face of unsure expectations…..

Nick Doctor

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

Blog #133~Transition to Adult Day Program

Blog #133~Transition to Adult Day Program

As I mentioned last week, the countdown is on to the end of school for my son.  Nick is 21 years old and has Down syndrome and autism.  In just a few weeks he will celebrate his 22nd birthday and will age out of the school system.  So what will Nick do when the little yellow bus stops coming to pick him up?  Here’s a peek into his transition to the adult day program which started last week.

Nick is attending half days twice a week.  Each morning starts in the gym.  Here are some of the activities he will be doing:

Sensory Swing…..

Nick Swing AID

Yoga time….

Nick yoga AID.jpg

Bowling….

Nick Bowling AID

Nick picked out an animal book for one of his choice activities….

Nick reading AID

Nick stole his teacher’s chair when she got up.  Looks like he’s  making himself at home.  Now all he needs is a crown. 🙂

Nick chair AID

Here’s Nick’s reaction when his job coach asked if he liked his new school.  A fist pump with a big yay! 🙂

Nick fist bump AID

Week one of the transition to the adult day program was a success. A special thank you to Jodi, his job coach for providing the pictures above!  I’m so pleased that he is happy there and the activities keep him busy, productive and most of all, happy 🙂  There are a few more wrinkles to iron out, but progress is being made for this to be a success for Nick.  That’s what is in my noggin this week.

~Teresa

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