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, Dual Diagnosis Down syndrome and autism

Resources for Down syndrome and Autism

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

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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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