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

Columbus Day

columbus-day

We are taking a break this week!   There are many topics of Nick’s world, in the archives to explore:

Safety/Wandering

Behavior/ABA

Down syndrome

Dual Diagnosis Down syndrome and autism

Education/IEP’s

Feeding/Hygiene

Government funding and legal issues

Health Issues and Down Syndrome

Special Needs Resources

Special Needs Parenting

Therapies (OT, Speech, and PT)

Recreation/Leisure

Tech/AAC (communication devices)

The Fun Side of Nick

Thank you for reading and sharing Nick’s World!  You can find us on Facebook and Pinterest @Down Syndrome With a Slice of Autism, on Instagram @ #nickdsautism, and Twitter @tjunnerstall.  See you next Monday for a fresh new blog!  That’s what is in my noggin this week.

~Teresa

 

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

Follow Nick:

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Posted in Augmentative and Alternative Communication (AAC), Autism, Behavior/ ABA, Dual Diagnosis Down syndrome and autism, Uncategorized

Blog #155~More Than Just Down Syndrome,DS-ASD

Blog #155~More Than Just Down Syndrome, DS-ASD

My son, Nick has Down syndrome. There came a point when I felt like we didn’t fit in with the Down syndrome support groups. We stopped going to the local support group holiday parties, play groups and other fundraising events. My son, Nick lacked speech and displayed unusual and repetitive behaviors.  These stimming behaviors included tapping, shaking and throwing objects.  Vocal stimming and yelling was another behavior that he exhibited.  His speech delays resulted in frustration on his part, which led to behavior problems and violent meltdowns.  It became apparent that this was more than just Down syndrome, when he hit puberty.

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We approached the elementary school IEP team about these outbursts, where he would throw things, trash the classroom along with pinching and scratching staff.  It didn’t seem like any of us, could get a handle these problems both at school and in our home.  The school was reluctant about getting an autism evaluation done, as they stated; “We have a primary diagnosis of Down syndrome we can work from”.  Rather than push the matter with the school, we chose to have an independent evaluation done and paid for it (with some help from our private insurance), out-of-pocket.

It was money well spent. Nick got the diagnosis of Down syndrome and autism (DS-ASD).  If you suspect that your child’s behaviors are more than just Down syndrome, I would strongly suggest getting a medical evaluation done by a clinician.

The diagnosis of autism, was like getting the magic key, that unlocked the door to more services for our son...….

magic key

Here are the additional services we received with the secondary diagnosis of autism for our son Nick who also has Down syndrome.  Obtaining these services took some time, and didn’t happen all at once.  But the effort to get them, has been well worth it. These services were provided in part, by the school district and outside agencies:

*Behavior intervention by the school district,  BCBA certified autism specialist resulting in a Functional Behavior Assessment (FBA).  This lead to the development of a behavior plan, specifically targeting all triggers, and how to prevent & handle crisis situations during meltdowns.

*Speech support and training on how to implement a Picture Exchange System (PECS), along with an Alternative Augmentative Communication (AAC) device.

ipad touch chat.JPG         photo (123)

*Toilet Training and workshops for home support  This included coaching on how to develop and implement a timed toileting schedule and visual supports to promote independent living skills inside the home.

*Additional State Funding (In-Home Family Support Child Based Waiver)  This funds respite care, behavior support and safety/ health equipment to support the child at home.

*Federal Funding (Supplemental Security Income-SSI)  A federal  income supplement program funded by general tax revenues (not Social Security taxes): It is designed to help aged, blind, and disabled people, who have little or no income; and: It provides cash to meet basic needs for food, clothing, and shelter.

The formal, dual diagnosis of Down syndrome and autism (DS/ASD), helped school staff, therapists, medical professionals, family and friends get a better understanding of Nick’s behaviors.  By getting access to these additional supports, we’ve been able to change the strategies needed to help Nick navigate his world.  His communication improved, allowing him to feel understood, respected and less frustrated.  As a family, we felt better assisted with the autism training and having funding for respite staff that takes some of the burden off us.

If you suspect your child with Down syndrome may have autism, read this link by the National Down Syndrome Society for the signs and symptoms: @https://www.ndss.org/resources/dual-diagnosis-syndrome-autism/

Additional resources for navigating a dual diagnosis of Down syndrome and autism:

*When Down Syndrome and Autism Intersect-A Guide to DS/ASD for Parents and Professionals and Supporting Positive Behavior in Children and Teens with Down Syndrome books:

down-syndrome-and-autism-intersect

Book Supporting Positive Behavior DS

*The Kennedy Krieger Institute- https://www.kennedykrieger.org

*Down Syndrome Association (UK)- http://www.downs-syndrome.org.uk/for-families-and-careres/dual-diagnosis/

*National Association for Down Syndrome (NADS)http://www.nads.org/resources/down-syndrome-and-autism/

*Facebook Support Groups:

-Down Syndrome With A Slice Of Autism

-Autism Discussion Page (Bill Nason)

-Down Syndrome and Autism (there are several of these groups, all very supportive and openly honest)

The challenges of having a child with Down syndrome and autism are unique.  So many parents say that they no longer fit in with the Down syndrome support groups and can’t relate to the autism groups either; they feel isolated.  You as the parent, know your child best.  If you suspect that your child has more than just Down syndrome, take action to get a clinical, medical evaluation and find the additional support to help your child.

That’s what is in my noggin this week 🙂

~Teresa

Follow Nick:

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 Instagram @nickdsautism

Twitter @tjunnerstall

 

 

 

 

Posted in Adult Day Programs for Special Needs, Augmentative and Alternative Communication (AAC), Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, Recreation/Leisure and Special Needs

Blog #154~Adult Day Program 6 Month Update

Blog #154~Adult Day Program 6 Month Update

On my son’s 22nd birthday this past February, the little yellow bus stopped coming to the door.  My son, Nick has Down syndrome and autism and has aged out of school.  For the past 6 months,  Nick has been going to an adult day program.  This week I want to share some of the activities he’s been doing in this excellent program at the Keeler Center.

Nick’s adult day program is filled with many fulfilling activities each day.  Mondays are dedicated field trip days.

Here are some of the places Nick has visited in the community:

Shedd Aquarium

Library

Brookfield Zoo

Fabyan Park Japanese Garden

Fox Valley Park District Greenhouse

Phillips Park

Red Oak Nature Center

Art Studios

Fermi Lab

Local restaurants (Noodles & Company, Dunkin Doughnuts, Culvers, Colonial Café, etc..)

In the facility, Nick participates in a variety of activities:

Vocational jobs (cleaning and vacuuming sensory room, recycling, shredding, work  bins, gardening, menu planning, cooking, etc..)

nick vacumming aid

Social circle (News to You, greeting and using AAC devices)

Science projects

Table and bin work

Nick work aid

Arts and Crafts (for art fairs, mothers/father’s day, making cards, painting, etc..)

Recreational (gym activities, yoga, etc..)

Nick yoga AID

Fun Fridays (Holiday theme parties, dancing, karaoke, games, concerts, cookouts, movies, etc..)

Speech therapy (insurance private pay), to work on articulation and using his AAC device

Outside the facility, his group does community recycling, shopping for cooking day as well as volunteer jobs.  One of the sites is at a local church, (stuffing bulletins and cleaning the nursery).  The other workplace is at a food pantry, where they organize and stock inventory, like dried beans, cereal and peanut butter.

Nick recycling

Nick has a full life and rewarding activities in his adult day program. The staff is very dedicated, caring, welcoming and patient.  Yes, patient! Nick’s pulled several fire alarms the last few months.  The behaviorist on staff  has put a plan in  place, and met with the staff to curtail this ongoing problem. Hey, it’s Nick’s world, the rest of us are just trying to keep up. The current fire alarm pull count is now 40 pulls since 3rd grade.

While his speech is limited due to having a dual diagnosis of Down syndrome and autism, I can tell that he is very happy in this program.  How do I know?  When I wake him up in the morning he is excited to get dressed and out the door.  The other day I was driving him and his buddy Josh to the site.  Just before we crossed over the Fox River, Nick started saying “Keeler” with a big thumbs up.  It warms my heart knowing that Nick is happy and contributing to society. That’s what is in my noggin this week.

~Teresa

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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:

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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.

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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!

~Teresa

Nick’s First Day of Kindergarten, 1999……

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

Blog #151~OBX Vacation

Blog #151~OBX Vacation

What is OBX?  It’s an acronym for the Outer Banks.  OBX is a 130-mile stretch of barrier islands just off the coast of North Carolina. Along this coastline you will find quaint towns, sleepy fishing villages, lighthouses and a beautiful coastline lined with dunes covered in sea oats.

Sea Oats

OBX lighthouses

It’s the place to go and unwind, let go of worries, and relax.  The biggest decisions for me would be which swimsuit to put on along with what book and cold beverage to have in my hand.

OBX signs

For the past six years, our destination has been Duck, NC.  My son Nick, is 22 years old and has Down syndrome and autism.  He absolutely loves to come here.  Vacations and travelling can be tough on our kids with special needs.  Having a regular vacation spot gives Nick predictability. This in turn makes him feel secure, thus keeping his anxiety level down.  New environments and being out of a routine can be tough for a person with special needs; especially autism.  Anxiety can lead to serious meltdowns.  We are fortunate to be able to return here to Nick’s Uncle and Aunt’s beach house. A place where Nick feels at home.

Nick and Uncle Ron at the crows nest…..

Nick and Ron OBX

Nick is comfortable in their house and helps out by vacuuming and unloading the dishwasher.  He loves swimming in the pool and soaking in the hot tub.

Nick with his “stim” of choice, the tappers.  My beverage of choice; a Lime-A-Rita 🙂

Nick pool obx

Sensory issues related to autism can be another challenge on vacations.  Nick struggles with the texture and unevenness of sand as well as extreme heat.  It can be hit or miss getting him to even walk out to the beach.  The weather conditions were just right this year, with mild 80 degree temps and a nice breeze to cut the heat.  He did well hanging with us all on the beach a few times.  He even dipped his toes in the surf; success!

Nick Beach OBX

The dynamic was different this year.  We missed some family members including Nick’s grandparents, his brother and cousin.  Health issues, a new job out of college and a summer internship kept them from coming.  We missed having everyone together, along with the laughs and good times we’ve shared over the years here.

Nick and his brother Hank, OBX 2011

Nick and his brother, Hank at the Outer Banks, NC

OBX 2011

OBX Family 2011

OBX is where we let the stress fade as the waves washed away worries.  We each find our ways to unplug; whether it’s fishing, biking, tennis, manicures, massages, swimming, sunbathing and cracking open a good summer read.

My book of choice, following the extraordinary journey of retired Secret Service Agent, Clint Hill with five Presidents.  I highly recommend reading Five Presidents (#1 New York Times Best Selling Authors, Clint Hill with Lisa McCubbin)….

Five Presidents

The book is finished on OBX vacation, 2016.  Nick enjoyed his time there and still seems very happy.  We will take back some great memories, new tan lines and a good feeling of being restored.  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, Fun Side of Nick, Uncategorized

Blog #149~Vacation/Staycation

Blog #149~Vacation/Staycation

How’s your summer going?  Nick had a blast on vacation in Texas, and a staycation here with his cousins. My son Nick is 22 years old and has Down syndrome and autism. We flew down to Texas late June, for a family reunion in the Hill Country.  I managed to knock a few things off my Texas bucket list including Tex-Mex food, tubing, swimming and authentic BBQ.

Nick enjoying the pool with his cousins, Jake and Jenna….

Nick Hill Country pool

A plate of Texas heaven….

BBQ

It was great to see extended family, share laughs, stories, meals, elbow bumps, and get those awesome Overbey family hugs!  Thanks Laura and Scott for hosting a wonderful event.

Texas sunset

We enjoyed a nice 4th of July, and Nick certainly got into the patriotic spirit. I don’t know where he comes up with these things……

Nick flags

Following the 4th of July, my niece and nephew came up for a week.  We had a lot of fun taking them out and spoiling them. They knocked a few things off their Chicago bucket list:

* Chicago White Sox game

*Taste of Chicago

*Millennium Park “The Bean”

bean

* Giordano’s deep dish pizza

giordanos01

*Portillo’s Italian Beef

*Blain’s Farm and Fleet (not sure that was on the list, but a good laugh between me and Jenna)

Thank you to our respite workers, (Jodi, Kelsey and Lara) for taking Nick out during our staycation. It was fun enjoying Chicago with the kids, and just hanging out (and being the cool aunt).

Elbow Bumps….

Nick and Jenna

So, that’s our summer thus far.  On another note, I’m excited to share a great opportunity with you.  Recently I was approached to be in a partnership with A&E’s hit show, Born This Way!  This series features young adults who have Down syndrome showing everyone the possibilities.  I got an exclusive interview you won’t want to miss. Look for the blog post later this week.  Check the social media sites below  for more information, including a look at the trailer.  Let’s get the word out, and share this on your social media as well.

A&E’s Born This Way premieres next Tuesday, July 26th at 10/9c!

BTW FB creative.jpg

What a great summer, it’s been.  See you in a few days with my exclusive Born This Way interview! 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, Uncategorized

Nick Update

Nick Update

Nick flag

Vacation in Texas and the 4th of July were a lot of fun.  Nick’s cousins have been visiting us for the past week.  We’ve had a blast and look forward to sharing all about it next Monday.  Want to know more about Nick’s world, Down syndrome and autism?  There are a variety of categories located on the right side, below the archives  including:

Adult Day Programs for Special Needs

Augmentative and Alternative Communication (AAC)

Autism

Autism Safety and Wandering

Behavior/ABA

Down syndrome

Dual Diagnosis Down syndrome and autism

Education and Special Needs

Feeding, Personal Hygiene, Toileting

Fun Side of Nick

Government/Legal Matters Related to Special Needs

Health Issues and Special Needs

IEP’s

Parenting Special Needs

Physical Therapy and Special Needs

Recreation/Leisure and Special Needs

Resources for Special Needs

Speech and Occupational Therapy

Tech Stuff/Apps and Video Based Instruction

Toileting

We have daily updates on our social media sites below. Have a great week and see you next Monday with more of Nick’s world!

~Teresa and Nick

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