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Blog #158~Down Syndrome Awareness Month

Blog #158~Down Syndrome Awareness Month

Down syndrome awareness month

October is Down Syndrome Awareness Month.   This month, I want to share some information and educate the public about Down syndrome.

Facts about Down syndrome

Courtesy of The National Down Syndrome Society (NDSS)

*Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.
*There are three types of Down syndrome: trisomy 21 (nondisjunction) accounts for 95% of cases, translocation accounts for about 4% and mosaicism accounts for about 1%.
*Down syndrome is the most commonly occurring chromosomal condition. One in every 691 babies in the United States is born with Down syndrome.
*There are more than 400,000 people living with Down syndrome in the United States.
*Down syndrome occurs in people of all races and economic levels.
*The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80% of children with Down syndrome are born to women under 35 years of age.
*People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer’s disease, childhood leukemia, and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.
*A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all.
*Life expectancy for people with Down syndrome has increased dramatically in recent decades – from 25 in 1983 to 60 today.
*People with Down syndrome attend school, work and participate in decisions that affect them, and contribute to society in many wonderful ways.
*All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses.
*Quality educational programs, a stimulating home environment, good health care, and positive support from family, friends and the community enable people with Down syndrome to develop their full potential and lead fulfilling lives.

Down syndrome journey

Since this is about awareness, it is important to educate people on the appropriate language that should be used. People with Down syndrome should always be referred to as people first.

Do NOT say:

*”A Down syndrome baby or child.”

*”Down’s baby or child”

*”Down’s”

*”He has Downs”

Instead say: “A child with Down syndrome”.  Finally it should be said “Down” and NOT Down’s.” Down syndrome is named for the English physician John Langdon Down, who characterized the condition, but did not have it.  Global Down Syndrome.org mentions that,  “Originally, it was referred to as his syndrome – Down’s Syndrome.  In the UK, Europe and many other countries, the correct term still remains “Down’s Syndrome.” In the U.S., it was changed to Down syndrome (drop the possessive) as to emphasize that it was not Dr. Down who had the syndrome nor was it his”.

My son Nick is 22 years old, and has Down syndrome and autism.  I’ve heard all of these incorrect phrases over the years. Please help me educate the public on the proper way to refer to a person with Down syndrome.  Thank you for reading and spreading awareness about Down syndrome.  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)!

Trump_Key_Art_Premiere_FIN.indd

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

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

Blog #155~More Than 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 and inability to communicate, resulted in frustration on his part, which led to behavior problems and meltdowns. It became apparent that this was more than just Down syndrome, when he hit puberty.

photo-26

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 in school or at home. The school IEP team 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 new diagnosis of Down syndrome and autism (DS-ASD). If you suspect that your child’s behaviors might be related to more than just Down syndrome, I would strongly suggest that you get a referral from your primary care physician to get an evaluation for autism.

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, 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 Support was requested from the school district, A BCBA certified autism specialist did a Functional Behavior Assessment (FBA). This lead to the development of a Behavior Support Plan (BSP), specifically targeting all triggers, and how to prevent & handle crisis situations during meltdowns. BSP’s can also target skill development in a variety of areas like toilet training which is very challenging. After the BSP was put into the IEP, we collaborated as a team. We built in specific visual supports and sensory breaks into his day, which helped him to stay focused and regulated.

*Speech Support and training on how to properly 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 use visual supports to promote independent living skills inside the home.

*Additional State Funding (In-Home Family Support Child Based Waiver)  This is funding for 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.

Getting the secondary diagnosis label of Down syndrome and autism (DS/ASD), helped the school staff, therapists, medical professionals, family and friends get a better understanding of Nick’s behaviors and additional needs. By getting access to these additional supports, we’ve been able to change the strategies needed to help Nick. It’s important to note that with co-occurring DS-ASD, the autism symptoms often supersede over those related to Down syndrome. Behaviors and additional needs associated with DS-ASD are complex.

DS-ASD Ribbon

As a result of obtaining these supports, Nick’s communication improved, allowing him to feel understood, respected and less frustrated. As a family, we felt better assisted with the training provided from the BCBA and our local autism center. Applying for the state waiver and securing the funding for respite staff took 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)

-The Down Syndrome-Autism Connection http://www.ds-asd-connection.org

The challenges of having a child with co-occurring Down syndrome and autism (DS-ASD) 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 with Down syndrome may have symptoms associated with autism, I strongly suggest that you take action to get a clinical, medical evaluation. The autism label doesn’t change who your child is as a person, it gives you a better understanding how to meet the child at their own level.

That’s what is in my noggin this week 🙂

~Teresa

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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, IEP (Indivdualized Education Plan), Physical Therapy and Special Needs, Speech and Occupational Therapy

Blog #152~Lessons From Olympian Simone Biles

Blog #152~Lessons From Olympian Simone Biles

After winning individual gold in the women’s gymnastics all-around on Thursday, Simone Bile’s, in an interview, made a declaration. “I’m not the next Usain Bolt or Michael Phelps,” she said. “I’m the first Simone Biles.”

Simone Biles

Before going to teach spinning class last week, I was rushing around the house getting ready.  Out of the corner of my eye, I caught a glimpse of the Good Morning America interview featuring gold medalist, Simone Biles at the Rio 2016 Summer Olympics.  It struck me that this pint-sized, power house had 4 training tips that packed a lot of punch. I grabbed my coffee, pen and pad to jot down a few bullet points.

Having a child with special needs presents many obstacles in life.  I’ve had my share of them with my son Nick, for the past 22 years.  Nick has Down syndrome and autism.  The low muscle tone (a trait of having Down syndrome) delayed him from reaching gross motor milestones until much later than most babies.  He didn’t sit up until a year old, and he didn’t walk until he was 3 ½ years old.  Nick had to work a lot harder to hit those targets with years of physical therapy.  We’ve also spent 22 years going to speech and occupational therapy to help feeding, communication along with fine motor, sensory issues.

It has been quite a journey, which brings me back to those bullet points I scribbled down.  In the Good Morning America interview, Simone offered up some advice on her training regimen.  They are 4 simple lessons, and my take on they apply to raising a child with special needs:

  1. Enjoy the Ride

The journey isn’t always going to be easy.  It’s going to take a lot of hard work and shedding tears.  And that’s to be expected.  But, find a way to embrace the journey.  Have some fun as you go, and surround yourself with people who make you laugh.

  1. Never Give Up

There will be days, weeks and months where you see no progress.  Sometimes mistakes will be made.  That’s when you pick yourself up and trust that you can do it no matter what.

  1. Trust Your Squad

The fierce five huddled, cheered each other on, and believed in other.  When you have a child with special needs, you have to get a good squad together to help push them to succeed.  This includes the IEP team along with outside therapists.  Huddle in from time to time, and always keep the lines of communication open.  Make sure all the goals and dreams for your child are in sync.  Parents should have their own squad of friends and support groups you feel comfortable with.  Your squad understands the insurmountable pressure faced when raising a child with special needs.

Fab 5 Rio

4. Treat Yourself

After a competition, Simone (whether she wins or not) enjoys pepperoni pizza.  Parents of special needs kids spend a lot more time and energy helping their child reach goals.  It is beyond exhausting. Get a respite worker to watch your child.  Find the things that you enjoy and indulge.  Go out to lunch with girlfriends, get a manicure, go workout, take a trip to Target (alone), enjoy a nap, have a glass of wine.  Treat yourself, you deserve it.

That’s great advice from the 19-year-old Olympian champion.   Life will always have it ups and downs, twists and turns.  But if you can find a way to embrace the journey, you can hit the top of that podium and be the champion of your own life and your child’s.

Nick wins the gold for the softball throw at the State Special Olympics~2003

Nick Special Olympics

 

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

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 Down syndrome, Dual Diagnosis Down syndrome and autism, Parenting Special Needs

Blog #150~A&E’s Born This Way, an Exclusive Interview

Blog #150~A&E’s Born This Way, an Exclusive Interview

A&E’s Emmy nominated series, Born This Way premieres its second season next Tuesday, 7/26/16 at 10pm/9pm (Central).  Born This Way features a cast of seven young adults with Down syndrome.  The show follows each cast member pursuing their real lives with passions, wants and needs the same as any other person their age. It will warm your heart, make you laugh and smile. They shine a wonderful light showing how awesome their lives are. And they’ve got serious swag…..

A&E’s Born This Way premieres, Tuesday July 26th at 10pm/ 9pm (Central)

Trump_Key_Art_Premiere_FIN.indd

Recently, I was approached by the marketing department to partnership with A&E to help bring awareness and promote this show.  My son, Nick is 22 years old and has Down syndrome as well as autism.  So, I was happy to jump at the chance to do so.  Today’s blog post is an exclusive interview with the mother of Sean, a featured cast member on the show.

Sean McElwee is 22 years old.  He’s a dashing young man, an excellent golfer and gifted athlete. Sean thrived in inclusion in primary school and survived exclusion in secondary school.  He attends community college and works at Home Depot. He is a self-professed ladies man, and has dance moves that own the floor.

Sean with his parents Rick and Sandra……

Sean family pic

Let’s get to the interview with Sean’s Mom, Sandra Assimotos McElwee ….

Sandra Assimotos McElwee is an advocate for unborn babies with Down syndrome and created one of the first websites for parents with a prenatal diagnosis. She’s the author of three books,Who’s the Slow Learner? A Chronicle of Inclusion and Exclusion”. McElwee contributed to the books, Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Our Lives“,  and “You Will Dream New Dreams, Inspiring Personal Stories by Parents of Children with Disabilities.” Married over twenty-two years to Sean’s father, Rick, they enjoy traveling and participating in Sean’s sports activities.  A medical sales professional, McElwee’s most important job is being Sean’s mother.

Interview with Sandra McElwee, Sean’s mom:

1.     What advice do you have for parents with younger children and newborns that have Down syndrome?

—Enjoy your baby, don’t get caught up in the ‘what could be’ although I know it’s hard to not think about a future wedding when you have a baby. The dreams you may have, the dreams that you had that may have been dashed by the diagnosis –they will become new dreams and in my case dreams I could never have imagined in my wildest imagination! 

2.  During the age that Sean was in the public school system, what was the most difficult part of the IEP process for you?  Where you happy with the end result of schooling and his IEP.

—I’ve written a book about this—‘Who’s the Slow Learner? A Chronicle of Inclusion and Exclusion.’

Who's The Slow Learner

Sean was an inclusion pioneer, the first student included with a disability in his elementary school. His inclusion was such a success by the 4th grade the school became an inclusive school and there were no segregated classes and around 40 students with a variety of special needs fully included. The wheels fell off in secondary school. So no, I was not happy with the end result, but the first 7 years were text-book perfect.

The most difficult part of the IEP process was in high school when educators and administrators outright lied to me.  

3.  What advice would you give for new teachers and special education teachers who will be working with students that have Down syndrome?

–Please give your students opportunities. Allow them to express their interests and support them in pursuing their interests. Don’t assume just because someone can’t speak clearly that they don’t have something to say—listen to them. And do not expect a person with Down syndrome to have BETTER BEHAVIOR than the typical students.  

4.  What has been your biggest joy and accomplishment raising Sean?  What has been the toughest time and struggle?

–Seeing Sean grow into a confident, independent adult. The toughest struggles have been dealing with the prejudices of educators who limited his opportunities when he was in high school. 

5.  What would you like to share with the world about Sean, Down syndrome and being on Born This Way?

—I want the world to see that Sean and people with DS are more alike than different, they simply needs support and opportunities to show the world their capabilities. 

6.  As a mom of my son Nick, who is 22 years old and has Down syndrome; what are your biggest fears for your son now that he is an adult? 

—My biggest fears are that he will get his heart broken to the point of not wanting to try again…although he really has a lot of tenacity so like most fears, mine is probably unfounded.

I hope that Born This Way and this interview will enlighten and inspire parents, family, friends and educators who have been lucky enough to be touched by a child who has Down syndrome.  Be sure to set your DVR’s for A&E’s Born This Way.  Please share this blog and the additional social media links below.  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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