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

Blog #153~Special Needs Back to School Tips

Blog #153~Special Needs Back to School Tips

For the first time in 22 years, I don’t have to buy school supplies for my son.  Nick is 22 years old and has Down syndrome and autism.  He aged out of school on his birthday last February.   He attends an adult day program, which he enjoys immensely.  After 22 years I’ve learned a few tricks for getting back to school smoothly with your child that has special needs:

Back to school helpful tips

 5 Special Needs Back to School Tips

1.Look over your child’s IEP (Individualized Education Plan) before school begins.  The IEP outlines academic and functional goals, supports needed, accommodations and services.  Reach out to your child’s case manager/IEP coordinator or Support Teacher, and ask specifically how these will be implemented, and how data will be tracked.

2. Arrange a visit to the classroom before school begins.  Request that a social story (pictures or video); be made of the settings that your child will be in at school, (classroom, lunch room, gym, sensory area, etc.).  If possible have the social story include pictures of support staff and classroom peers. If a child with autism can see it in picture and/or written form, they will better understand it.  This in turn, becomes their blueprint which; will lesson anxiety levels for your child.

Social Story for Back to School:

back to school Nick

3.During the classroom meet and greet, arrange a mode of communication with your child’s teacher.  In the past I have used both email and a communication notebook which goes back and forth.  Since my son is for the most part non-verbal, so this allowed me to share if Nick had a restless night or was maybe he was fixated on fire alarms. (By the way,  he’s been at it again. He pulled a few more alarms this summer, while staff was on vacation. Check the “About” Page for the current pull count).

Communication Book and Daily Activity Chart:

photo (117)

4.Start Early! Get school supplies, clothes and shoes shopping done and haircut at least a week before the start of school.  Having a child with special needs often means a lot of angst over haircuts.  For Nick the stress of getting one can affect him for several days after.  If you would like more tips on haircuts, hit the search box on the top right of this page.  Type in: Blog #18, A Cut Above. The night before school starts, have your child help lay out the clothes, organize the school supplies and pick out lunch/snack choices.  It’s all about having a smooth start to the day and this helps especially at six o’clock in the morning.  One thing that was NEVER EARLY; the school bus.  Make sure you have carved out your schedule accordingly and have something for your child to do while you wait.  On average, we’ve waited 30-45 minutes for the bus to get to our house the first few days of school.

photo (113)

5.Consider doing volunteer work at your child’s school.  It is fun and you can see firsthand how your child is doing in the classroom.

Here are a few school volunteer ideas:

*Holiday Parties

*Art Awareness Presenter

*Chaperone Field Trips

*Field Days

*Picture Day

*Work book fairs

*Library aid

*Special Olympics Practices

*Assist Case Manager/ Support Teacher- Making copies, laminating, helping to create classroom supports.

Nick and I wish you all the best as you start the new school year with your child that has special needs.  Be cognizant of what is in the IEP, follow-up with communication, layout the blueprint for your child and get organized.  That’s the recipe for a smooth start to the new school year.  Oh, and don’t forget to take that cute first day of school picture and post it on Facebook.  That’s what is in my noggin this week!


Nick’s First Day of Kindergarten, 1999……


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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

Blog #145~Hitting Milestones, Moving On


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.


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…


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!


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.


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.


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.


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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:


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.


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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.


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”.


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….


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. 🙂


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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


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.


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Posted in Autism, Down syndrome, Education and Special Needs

Blog #132~Countdown to the End of School

#132~Countdown to the End of School


The clock is ticking, and rapidly might I add.  Coming off the holidays, I’ve hit the ground running.  You see in less than a month my son, Nick will be aging out of the school system.  He is 21 years old and has Down syndrome and autism.  The day before his 22nd birthday will be the final day that the little yellow bus stops coming to the door.


We’ve been preparing for this day for months.  The post-secondary transition program he is attending (STEPS) has done an excellent job to map out a plan for this to be a seamless transition.  Last Friday, Nick visited the new facility (an adult day program).  His speech therapists took pictures and made a social story for Nick.  A person with autism benefits from having a visual schedule.  If they can see it, they can understand it.  This helps with reducing anxiety levels.  Here are a few of pictures from the social story:

Adult Day program site……


Nick in the gym….

Nick gym

Nick will have a recycling job, elbows to that!

Nick recycling

Starting this week, Nick will be going to the new facility for half the day on Tuesday and Thursday.  The next couple of weeks he will expand his time there.

The other piece of the puzzle is transportation.  We have to insure that Nick can utilize the Ride DuPage successfully on his own. He will be doing some practice runs with his job coach. Then, if all goes well on his own with someone to meet him at curbside. We have requested a car to pick up rather than a bus.  This is the piece of the puzzle that keeps me up at night.  It’s uncharted territory that is giving me anxiety.  Nick actually does well in the car as he likes to be on the go.  Just make sure the window and door locks are set, he has some tappers to stim on and nothing to throw at the driver. I should pick up some Windex wipes so he can wipe the snot rockets off the window as well.  🙂

As the clock is ticking, I’m busy getting him to doctor and dentist appointments, arranging for a new  talker device and case (his current AAC device has to be given back to STEPS) and working with insurance to hopefully get speech and occupational therapy set up in his  new program.  In addition, the waiver to which Nick receives funding thru the state will need to be switched from the child to the adult waiver (which will increase his funds to support the day program).  The pressure is on, this needs to work, it has to work.  Nick needs to be in a structured program.  And this is an excellent one with a caring and qualified staff.  And I need to keep teaching my fitness classes and have my own life (and sanity).  Wish us luck, that’s what is in my “nervous” noggin this week.


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Posted in Autism, Down syndrome, Education and Special Needs

Blog #130~Documentary “Graduating Peter”

Blog #130~ Documentary “Graduating Peter”

Over the weekend, I watched a documentary on HBO called “Graduating Peter”.   Actually I’ve seen it before many years ago, but have a new perspective on it now that my son is older. My son Nick is 21 years old and has Down syndrome and autism.  The original documentary which won an Academy Award in 1992 was “Educating Peter”.  Peter Gwazdauskas, a special needs boy with Down syndrome, was the first student to go into the inclusion classroom in his school district.  Federal law states that special needs students should be educated with regularly developing students in traditional schools. Peter’s first half of the school year was not going well, (due to behaviors such as making loud noises, rolling around on the floor, and being injurious towards other students in class).  But he made improvements and gained acceptance as time went on.

Peter in elementary school in Blacksburg, Virginia….


In the sequel “Graduating Peter” (2001), the journey continues from middle school until high school graduation.   The adolescence environment was not as accepting of his behaviors (like grabbing another student’s roll at lunch and throwing it at him).  His spoken language skills were limited.  He had no way to express how he feels and it came out in his behaviors.  The isolation from peers led to Peter suffering through depression.  During the school day, Peter had aides with him in school because he cannot function well due to his disabilities.  He also had several jobs during the time (sweeping mass transit buses, dishwashing at a hotel restaurant, doing laundry at school, etc…).  In the summer, his mom hired an aide to continue to work on community interaction and job skills. I loved seeing Peter’s face light up when he rode the roller coaster at a peer buddy program event.   In addition, he becomes the manager of the high school soccer team. He beamed with pride having a deep sense of friendship with his teammates.  Peter makes them understand there are bigger issues in life than just soccer.  In his senior year, he escorts a date to the prom and graduates with his class!

Peter at high school graduation….


My son Nick would have no part of the graduation hat and tassel……


Peter’s mom did a great job as his advocate.  She understood her son and realized that his lack of spoken language was his biggest disorder.  Her desire was for Peter to live in the community as independently as possible and to have a meaningful job that he enjoys along with maintaining friendships.  I understand her plight.  My desire for my son is the same.  Nick has the hurdle of autism along with Down syndrome.  This limits his chances of having a paid job in the future and living independently.  Nonetheless, Nick takes pride in the work he does at school and home.

Nick unloaded the dishwasher unsupervised last night. A bit topsy turvy but everything in the proper place…….


As I posted on the update last Monday, Nick has many jobs and leisure activities in the community thanks to some wonderful respite workers! 🙂  Here’s Nick making a delivery run to a school. In the boxes are home made ice packs they assembled in his STEPS program he attends….

Nick delivery

Keeping those  community outlets open, providing communication supports and a good staff can help a child with disabilities lead a full and meaningful life.  The documentary “Graduating Peter” while showing the struggles of living with Down syndrome also sheds a light on how important relationships are.  Positive peer relationships can help a person with special needs feel accepted and thrive in the community.  That’s what in my noggin this week. 🙂


***IMPORTANT NOTE:  Set your DVR’s for Tues. Dec. 8th 10/9central on A&E don’t miss “Born This Way”–7 Adults with Down Syndrome share their lives.  Check out my Facebook page called “Down syndrome with a Slice of Autism to see the preview!

Posted in Autism, Down syndrome, Education and Special Needs

Blog #129~ Communication Strategies and Autism

Blog #129~ Communication Strategies and Autism

Last week I attended a presentation given by Brian R. King (  This was part of the Autism Expert Series at The College of DuPage.  The topic was “Speaking of Autism: Communication Strategies for Connection and Collaboration with Those on the Autism Spectrum”. Brian has firsthand experience in this area. He is a best selling author, speaker, trainer and life coach.  As a cancer survivor, adult with A.D.D., the father of three sons on the autism spectrum as well as someone who lives on the autism spectrum himself, he has learned something very critical:  “That success in life has nothing to do with circumstances, but everything to do with strategies”. ~Brian R. King

autism puzzle superman

In his presentation, Brian covered 6 main areas of needs and provided strategies specific to those on the autism spectrum:

  • Certainty:  What things can be put in place that that are predictable and consistent?  Meltdowns can happen when a need for certainty is not met.  So it is important to put a loop hole in daily plans.  Make sure you have “Plan A” and “Plan B” in place and explain both beforehand.  Plan A is golfing, but if it rains then go to Plan B a pre-set indoor activity.  If they can trust that there is a Plan B, there will be less anxiety and a willingness to be flexible. 
  • Variety:  As important as certainty is, there is a need to keep variety in the mix.  Life can’t always be about going to McDonalds for lunch. You’ve got to step off the curb.  Look up other restaurants on the web that have similar menu items with your child.  Together, come up with a plan to try a new spot. Be prepared to have an escape plan, if the trip doesn’t go as planned so the child can decompress.
  • Significance:  People on the autism spectrum need to know they matter.  What might appear to be attention seeking behavior (talking out of turn, not raising their hand to answer a question) may be an attempt to be noticed, validated and to be a part of the group. Another example is this; a child may not process the question as quickly as their peers.  They might just make up an answer or a lie when put on the spot.  One teacher tip would be to ask the question and say, “Johnny I’m going to come back to you in a couple of minutes”.  This allows the child to process the question and not just blurt out any answer.  Visuals can also help to process information.  Provide a tool to write down the assignment.

visual work board

  • Love and Connection:  Working with those on the autism spectrum requires patience and letting the child know that you hear them, understand them and have their back.  It is essential to pause, and avoid lecture or shame.  But rather teach that you want them learn from mistakes.  Be their cushion of safety so they feel cared for and loved.


  • Growth:  We all have a desire to make progress and see results of improvement.  What need is the child going toward?  Often there is a tendency to gravitate to certainty.  Look for ways to have the child excel in those places of certainty.  In contrast, keep in mind the child will tend to avoid areas where there are too many opportunities to fail. These are the places that will require more support.
  • Contribution:  When you have something of value to give, you feel more significant.  Look for those strengths and allow the child on the autism spectrum to shine.

My son Nick working the vacuum at a community job……

Nick vacumming_Tabor Hills (3)

  Assessing these 6 areas of needs and putting strategies in place will set your child up for success. It will also help those on the autism spectrum feel secure, valued, and connected and a part of the group/community.   I am always looking for ways to help my son.  Nick is 21 years old and has Down syndrome and autism.  After attending this presentation I’ve identified some areas I need strengthen within these strategies.  This includes getting a “Plan B” more consistently, continue to stretch his boundaries, listen to him when he tries to get attention inappropriately, and allow him to shine in what he does the best. 

Thank you Brian R. King, for shining a light on how to better communicate with those on the autism spectrum and provide strategies to support them. That’s what is in my noggin this week.


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

Blog #126~Nick and the Varsity Football Team

Blog #126~Nick and the Varsity Football Team

Recently Nick and his respite worker Jodi were taking a walk around the Waubonsie Lake trail. Suddenly, Nick took off running towards the high school.  Jodi scanned past the trail to figure out what Nick was going after.  His face lights up.  Oh no, it’s the “KEY TREE!”

key tree

The football players hang their car keys here.

Nick is 21 years old and has Down syndrome and autism. Long before the 34 fire alarms he has pulled since third grade, he discovered car remotes.  He sought them out feverishly.  He’d even fish them out of babysitter’s purses, run to the front door, and set off their car alarms.

Back to the key tree…… Nick is cheetah fast when it comes to setting off alarms.  Jodi had no intention of letting Nick disrupt football practice so she sacrificed her own remote to distract him.  Hey, I’ve said it before.  Its Nick’s world, the rest of us are just trying to keep up. 🙂

When football practice was over, Jodi took Nick over to say hi to the team. Her son, Tyler plays center for the Waubonsie Valley High School football team.  Nick is about half his size standing 5’2 and weighing barely 110 pounds soaking wet.

Nick with Tyler….

Nick and Tyler

On Thursday nights after practice, the players get treated to a pasta dinner. Nick helps set up and pour drinks for all the players.  He elbow bumped each player as they came through to get their food.

Nick loves his pasta!

Nick meatballs

He also assisted in cleaning up afterwards…..

Nick and Dan

After dinner Nick helped the coaches pass out the senior’s white jerseys. He kissed each jersey before he tossed them at the players.  They would laugh and elbow bump him as each passed through the line.

Nick has a way of livening things up. The Warrior football players are always excited to see him at practices and dinner.  They have named Nick their “Warrior Dude”.  As a mom, it makes me so happy to know that Nick is getting out in the world, meeting new friends and bringing smiles (and chuckles) along the way.  That’s what is in my noggin this week.  Go Warriors!

Nick and Football team

~Teresa 🙂