Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, Education and Special Needs, Feeding, Personal Hygiene, Toileting, Parenting Special Needs, Resources for Special Needs

Blog #164~Why Use a Visual Schedule?

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Blog #164~Why Use a Visual Schedule?

We all hate getting lost, it can be aggravating  and nervewracking. That’s why we use maps to help navigate our way.

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The same is true for a child with special needs who lacks verbal and cognitive skills.  Providing a visual schedule allows your child to see what is going to happen in their day. My son, Nick is 22 years old and has Down syndrome and autism. Visual schedules provide many benefits for him to travel smoothly, through his daily routine.

Nick fist bump AID

Benefits of Using a Visual Schedule:

*Provides structure and predictability by showing a child what is coming up next.  This greatly reduces anxiety and builds confidence.

*Helps with transitions from one activity to the next.

*Picture form is easier to understand than verbal instructions.  Children with autism often comprehend pictures and/or written directions easier than verbal cues alone.

*Helps to teach sequence of events especially when using words, “first”, “next”, and “last”.

*Expedites learning routines and fosters independence in self-help/hygiene skills and household/school jobs.

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*Helps with time management and literacy development by reading through pictures and words associated with them.

*Improves conversation skills by giving a visual framework of what they did and what was their favorite part of the end of the day.

*Assists teachers and caregivers with routine changes, when things get out of sync.  It also helps to introduce a new and/or different activity.

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Visual schedules come in all shapes and forms and many are available in Google images.  You can adjust the length and type of images, (PECS-Picture Exchange System, photos, written words,  iPad/ smart phone apps) to what your child will most easily understand.

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It’s best to start with a small routine and adapt the schedules based on your child’s needs and abilities. Try pairing a non-preferred activity (first) followed by a preferred choice (next).  Your child’s speech therapist can be of great help in creating picture sequences that would fit their needs.

Going through a visual schedule with your child, helps them understand what is going to happen, and what behavior you expect.

Here is one we use when going to the mall.  Note the visual below has going to the stores (first)  and Taco Bell (next) as the preferred activity.

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Sequence for going to church:

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Full Day Schedule: ( Note, this could be broken up in separate pieces if this would be to overwhelming).

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Using visual schedules have been shown to be helpful for children and adults with special needs by giving them more control on what goes on in their daily lives.  It provides the road map to navigate for a smooth ride through their daily routines.  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, Education and Special Needs, IEP (Indivdualized Education Plan)

Blog #157~Making Inclusion Work

Blog #157~Making Inclusion Work

Is inclusion right for your child?  That was the question I addressed in last week’s post.  Inclusion simply stated, means that a student is supported in the general education classroom setting with given supports outlined in the IEP.  The IEP is an Individualized Education Plan, is a document for special education students.  This document identifies how the student will learn, what services the school will provide, and how their progress is measured.  My son Nick, was in an inclusion classroom during his elementary school years. He has Down syndrome and autism, and benefited greatly from the experience.  How do you make the inclusion setting work for your child with special needs?

The Individuals With Disabilities Education Act (IDEA), amended version 2004, does not actually list the word inclusion. The law actually requires that children with disabilities be educated in the “least restrictive environment appropriate” to meet their “unique needs.” The “least restrictive environment” typically means placement in the regular education classroom which typically means ‘Inclusion’ when ever possible. (Source taken from about.com)

The IEP team works with the parents to determine the least restrictive environment and builds the placement around this concept.  What will the child need to be successful in a regular education classroom?   The IEP team and parents should collaborate to identify supports needed.

Classroom Supports:

*Modified Curriculum:  (Regular education teacher and support/case manager) work together to adapt the current assignments for the child.  Make a plan to address what will be learned in the regular classroom, and how will the student will learn that similar information?

visual work board

*Staffing:  Does the child need a paraprofessional (classroom aide)?  What is the ratio? What additional training will be needed?

*Equipment:  Physical environment (modified desk, chair, adaptive equipment/school supplies, sensory supports)

*Assistive Technology:  Communication (Alternative Augmentative Communication “AAC” device, Picture Exchange Communication System “PECS”, Sign Language/Interpreter), or other devices using apps for to navigate schedules and assignments.

alphabet tracing  ipad-touch-chat

*Sensory Breaks: What space will be provided, is there a sensory area in the school?  How will the student request a break (need a break icon, button on AAC device)?  What equipment is needed, (noise cancelling head phones, figit toys, nubby cushion, music, weighted vest or blanket, bean bag chair, swing, trampoline)?

figit toys   nubby therapy cushion

In addition to identifying classroom supports, the team should address these questions at the IEP Meeting:

* What are the student’s strengths, and how do we build a plan around them?

*How does the student learn best?

*What behavior support is needed to help the student learn the best, and operate comfortably in the general education classroom?

Identifying supports needed and how to best accommodate the student will set a good foundation to success in the inclusion classroom setting.  The student will benefit by having access to the general curriculum and build social relationships in this community in the least restrictive, inclusion environment.  That’s what is in my noggin this week.

~Teresa

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Posted in Down syndrome, Dual Diagnosis Down syndrome and autism, Education and Special Needs

Blog #156~Is Inclusion For Your Child?

Blog #156~Is Inclusion For Your Child?

Are you raising or involved with educating a child with special needs within an inclusion setting?  Perhaps you are considering  an inclusion classroom for your child.  If so, then THIS is the book you need to read:

whos-the-slow-learner

Who’s The Slow Learner? A Chronicle of Inclusion & Exclusion, written by Sandra Assimotos McElwee (Outskirts Press) is a great book and and resource on inclusion.   Her son Sean McElwee was born with Down syndrome.  Sean is now 22 years old and is one of the star cast members of the Emmy Award Winning series, Born This Way on A&E.  

Her goal for writing this book was to educate and inspire, while chronicling her son’s education experiences.  In Sandra’s words, “This is not a ‘How-to’ book, but a ‘How we did it’ book.”

What is inclusion?

Inclusion is a term which expresses commitment to educate each child, to the maximum extent appropriate, in the school and classroom he or she would otherwise attend.  It involves brining the support services to the child (rather than moving the child to the services) and requires only that the child will benefit from being in the class (rather than having to keep up with the other students).  Proponents of inclusion generally favor newer forms of education service delivery.

Full Inclusion means that all students, regardless of handicapping condition of severity, will be in a regular classroom/program full time.  All services must be taken to the child in that setting.  

(From Sandra’s book this information was taken from the Wisconsin Educational Council’s Website)

Inclusion not only benefits the special education student, but also the regular education students in class.  It can be highly successful with the right supports, accommodations, modifications and supportive school staff.  From my own experience, I found this to be the case with my son Nick, who is also 22 years old and has Down syndrome and autism.

Sandra offers a wealth of information in this book.  Each chapter begins with all Sean’s IEP goals for that school year.  The book is loaded with great ideas on how to navigate the school system and how/when to reach out for outside help using consultants to advocate for your child.  This was the case when Sean transitioned into intermediate school, where they determined a need to put a behavior support plan in the IEP.  Sandra provides this full behavior support plan in the book as well, which is very beneficial.  Getting outside support for communication and behavior also helped greatly during the adolescent years with my son, Nick. Keeping in the loop with staff and volunteering in the school and classroom is another great way to keep up with how your child is doing in school.

There are so many valuable lessons that Sandra learned and shares about her son’s educational journey.  Many of which I can relate to having gone through this with my son, Nick.  You are not always going to have a school team or some of the members supporting inclusion for your child.  Sometimes it’s the school staff that are the slow learners.  In this book, you can see how Sandra had to advocate even harder during the intermediate and high school years. Unfortunately this was not always a success. But these actions set the foundation, to make it easier for other families to follow.

The book not only contains a wealth of education information, but many funny and inspiring stories on how Sean touched so many lives.  In one story, Sandra gets out of the shower and noticed the unmistakable odor of popcorn being microwaved.  She fully expected to smell a burnt popcorn next, so she hustled quickly downstairs.  To her surprise, Sean had just opened a perfectly cooked bag of popcorn.  She asked Sean what number he pushed?  Sean looked at her like she was crazy, and pointed to the control panel and said “popcorn”.  It turned out that the all the site words Sean had been learning in first grade were working. Sandra didn’t even know there was a popcorn button on the panel.  In this case she, was the slow learner.

Who’s The Slow Learner? is not just for parents, but a great resource for educators, future regular & special education teachers, school administrators and advocates.  This is the first book that chronicles a student with special education needs from pre-school to high school graduation.  It’s a very instructive book that shows a mother’s determination to advocate for the best available resources in not always a cooperative educational system.

I’m sure this book will benefit many considering inclusion for their child with special needs, and the education team that will be providing for them. That’s what is in my noggin this week.

~Teresa

Catch Sean and his family on the Emmy Winning Series, A&E’s Born This Way, Tuesday nights at 9pm (8pm Central)!

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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

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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.

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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…

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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!

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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.

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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.

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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

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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.

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

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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……..

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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….

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Working at Tabor Hills Residential Community…..

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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, 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….

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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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Posted in Autism, Down syndrome, Education and Special Needs

Blog #132~Countdown to the End of School

#132~Countdown to the End of School

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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.

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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……

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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.

~Teresa

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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….

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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….

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

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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…….

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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. 🙂

~Teresa

***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!