Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, IEP (Indivdualized Education Plan)

DS-ASD~IEP’s and Advocating for Your Child

Do you have an IEP coming up for your child? Are you currently having concerns about your child’s IEP? Click on the following link to learn how to advocate for your child and collaborate with the school IEP team more effectively:

https://nickspecialneeds.com/tag/parent-input-in-iep/

Parents are an equal and vital part of the IEP process and team. Remember you know your child the best. That’s what is in my noggin this week.

~Teresa 🙂

Follow my son Nick, age 25 with a dual diagnosis of Down syndrome and autism (DS-ASD):

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram @nickdsautism

Twitter @tjunnerstall

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

Follow Nick:

Facebook @Down Syndrome With A Slice Of Autism

instagram-logo#nickdsautism

pintrest@Down Syndrome With A Slice Of Autism

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

Blog #74~ Teaching to 21

Blog #73~ Teaching to 21
Last week, I was a guest lecturer at Northern Illinois University. The graduate level class topic was “Functional Communication and Social Skills” as it relates to autism. I presented a parent’s perspective.

NIU logo

One of the greatest gifts we can give our kids is teaching personal independence. It’s never too early to start working on these skills. One concept brought to my attention by Nick’s support teacher from elementary school is called, “Teaching to 21.” What skills will an individual with special needs require to lead a successful life after school is finished? Here is a list of skills that should be addressed both in school and at home for students with special needs:

 Assessment of Functional Living Skills (AFLS)

Source: http://autismbeacon.com/topics/article/functional_skills_for_people_on_the_autism_spectrum

“Functional skills” are those skills that if learners cannot do for themselves, someone will have to do for them. Functional skills are immediately useful and important. They increase self-help and independence and are present in every setting and throughout every stage of life:

Basic skills:
Self-management
Basic Communication
Dressing
Toileting
Grooming
Bathing
Health, safety, first aid
Night time routines

Home Skills Module:
Meals at home
Dishes
Clothing
Laundry
Housekeeping
Chores
Household mechanics
Leisure
Kitchen
Cooking

Community Participation:
Basic mobility
Community knowledge
Shopping
Meals in public
Money handling
Phone
Time
Social awareness
Manners

School Skills:
School waiting and transitions
Classroom routines
Meals at school
Classroom people, places and objects
Classroom mechanics
Outside school
Functional academics
Classroom leisure and independence

The IEP team should address these skills in goal planning and daily schedules of the student. In addition, supports should be put in place that will assist the student in reaching these goals. Here are some of the supports that Nick has used in school. Since Nick has a dual diagnosis of Down syndrome and autism, these tangible provisions give him clarity and focus in doing his tasks.

*Visual supports such as task strips, social stories, picture schedules and video modeling:
task strip
*First-then visual or app to remind student what they are working for:
first then

first then app
*Timed Timer clock or app and Picture Scheduler app:

timed timer

picture schedule app
*Physical prompting-teacher may do hand over hand to teach a school and fade back to just pointing to direct student.

*Guiding student with visual cues (putting stickers on washcloths to teach folding sequence, sprinkle hole punch paper dots on floor to teach vacuuming, using counting templates, etc…)

Nick packaging door knobs_Habitat_4 (2)

For students with autism, if they can see it…. they can understand it. In Blog #5~Ready, Set, Action (located in April 2012 Archives) I wrote about how successful video modeling was in teaching Nick skills around the house. He responds to and is motivated by seeing the footage in a video format. It also landed him a community job at a local elder residence care facility.

Nick hard at work 🙂
Nick vacumming_Tabor Hills (3).

Nick takes great pride in his jobs both in the community, school and at home. We continue to work on the skills needed for him to be as independent in all areas of his life so he is ready to manage things when he is finished with school. It’s all about starting early and teaching to 21! That’s what is in my noggin this week. 🙂

~Teresa

Follow Nick on Social Media:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram @nickdsautism

Twitter @tjunnerstall

Posted in Autism, Education and Special Needs

Blog #58~ Dad’s Tool Kit

Blog #58~ Dad’s Tool Kit

How does a man growing up land locked in Hot Springs, Arkansas end up racing sailboats on Galveston Bay?  That’s my Dad.  Indulge me this week, I am missing him.  Tommy graduated with a master’s degree from The University of Arkansas and landed a job at as a Research Chemist at Shell Oil Company which brought him to the waters. He built his first boat on his own and fell in love with the sailing.

Dad on the boat he built……..

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I think about lessons that I learned from him. It was never formal like those polite moments in the pristine living room between the Beaver and Ward Cleaver.  I just noticed things.

Ward Cleaver

Here’s what I picked up from Dad’s tool kit………

 1. Keep your car clean and vacuumed

Dad was always washing cars, rubbing the interior with a rag and kept them vacuumed on a regular basis. He kept the 1974 green Nova sedan and later the 1981 beige Chevy Chevette immaculate.  I cringe when I see a car with empty cola drinks and bags of fast food discarded in the back seat like it’s a dumpster.  Dad showed me that it was a sign of respect to take care of your valuables.  So there laid the seeds for my need to have order.

When it comes to raising children you need order, especially with a child such as Nick, who has Down syndrome and autism.  A predictable and orderly environment helps him make sense of his world and be able to function better.  It helps me as well to feel in control and stay anchored.

2. Dab it with Mercurochrome™

Dad skipped the Band-Aid opting for Mercurochrome™ instead.  He would douse his cuts and scrapes with this awful red-orange stained antiseptic.

mercurochrome

When I was a kid there was a wart on my leg that would not go away. The over-the-counter treatments from the drugstore didn’t do a thing to rid it.  One evening Dad brought some dry ice from work.  He applied it to the wart.  Within a matter of days, it disappeared.  He and mom made sure I had my own fully loaded toolbox when I moved into my own home.  When I started gardening, he gave me one of his sturdy shovels.  I still use that same shovel each spring when I plant the tomato seedlings. In a way, he is right there with me.

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Sometimes finding your own way to take care of things can produce better results.  Over the years I have learned to find my own solutions when Nick came upon a hurdle in his development.  You can’t expect the IEP team members, therapists or doctors to have all the answers.  Sometimes you have to dig on your own to figure out what will work best for your child.  Don’t settle for just a Band-Aid.

3.Read the Wall Street Journal daily

Every morning Dad read the paper and did the crossword puzzle.  Upon retirement he became a regular at the La Porte Library reading the daily Wall Street Journal there. What a thirst for knowledge.  None of us could keep up when Jeopardy was on. Just as Alex Trebek spoke and barely finished his phrase my Dad would have the answer.

Never stop reading and educating yourself. It is essential for parents who have a child with special needs to keep up with the latest news, research.  Education is empowerment and as a parent you owe it to your child to be an informed advocate.

4.Why not give it a try?

In the winter, when the garden was dormant, Dad would bake long loaves of French or pumpernickel bread.

Beard on Bread

For a while Pops got on this Asian cuisine kick.  Once we attempted to make our own eggroll skins.  It was labor intensive and we never mastered the art of getting them thin enough. In hindsight I would suggest just buying the readymade skins at the store.

Dad also travelled extensively across the world when he retired. Whether it was flying across a zip line in Costa Rica in his 70’s or dancing Swan Lake wearing a tutu along with stripped tube socks and Sperry Top Siders  while on a cruise in Russia, he embraced it fully.

Having a child with special needs can bring many limitations to a family.  It’s easy to stay in the safe shell of home but there’s a problem with this.  Your world can become too narrow.  Al and I have tried not to let this happen. Nick has traveled with us on vacations including three different trips overseas to England, France and Spain.  Was it easy?….. NO!

Can it be done?…… YES!

Big Bend in London along with Grandma Theresa (oh no not the fanny pack again)…… 🙂

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I never imagined Nick could go scuba diving. But he did! 🙂  If you haven’t read this story check it out, (See Blog #53~ Scuba, Really?  located in the May 2013 archives).  Sometimes the bread comes out perfect.  Other times it’s a big flop, like those sad little egg roll skins.  But you have to give new things a try.  Grab onto that zip line and just hold on tight!

5. There ain’t no crying in baseball

no crying in baseball

Dad loved this movie, A League of Their Own.  A few years ago, at age 76, he got the diagnosis of stage four lung cancer.  I will never forget the message he sent via email quoting that line in the header of his note to family and friends.  Here it is in part……

“While you all are now sitting there long-faced and maybe teary, let me tell you some of the good side: 

I’ve had 76 years (so far) of a great life with a wonderful family and friends.  Over 17 years of retirement, with trips to Europe, Asia, Africa, South and Central America, down under, to mention a few.  And a terrrific  2nd life as an Ensign sailor/crew.”

Raising a child with special needs has brought many obstacles.  Nothing ever comes easy.  Often things seem impossible and unbearable.  Sadness is part of life.  I’ve had my share of pity parties over the past 19 years.  But Dad showed me how to handle problems with quiet dignity.  As I re-read his words above I am reminded of the fact that there are many beautiful things in life that you should always try to keep in the forefront.  Nick’s infectious smile and sense of humor…. Well it’s pretty “terrrrific!” 🙂

Nick and his cousin, Austin playing with Paw-Paw Tommy…..

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Hope you enjoyed some of the tools I have picked up from Pops over the years.  That’s what is in my noggin this week.

~Teresa