Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, Recreation/Leisure and Special Needs

Blog #211~50 Years of Special Olympics

Blog #211~50 Years of Special Olympics

Special Olympics 50 years

“Let me win, but if I cannot win, let me be brave in the attempt.” 

This is the motto of the Special Olympics, encouraging athletes to find the courage to give it all you got.

“The torch was first lit on July 2, 1968 when Eunice Kennedy Shriver ushered in a new era for people with intellectual disabilities, when — with 1,000 athletes from three countries — she opened the very first Special Olympics International Games at Soldier Field in Chicago.”

Two weeks ago, the torch returned here to Soldier Field here in Chicago, where it all started.  Fifty years later, the games have become a global movement reaching more than 5 million athletes.  Sport events include track and field, basketball, bocce, cycling, figure skating, soccer, power lifting, gymnastics, judo, tennis, swimming, skiing and bowling to name a few.

“Special Olympics is an international organization dedicated to empowering individuals with intellectual disabilities to become physically fit, productive and respected members of society through sports training and competition.”

My son Nick has a dual diagnosis of Down syndrome and autism.  Over the years, he has participated in Special Olympics competing in track and field, bocce and bowling.  The spirit, camaraderie and dedication of volunteers made the experience very rewarding for Nick and our family.  Watching the determined athletes is awe-inspiring.

Nick competing in the 50 yard dash at North Central College….. 

Nick backside special olympics

Nick special olympics podium

Nick showing off his gold medal earned at bowling…..

Nick special olympics bowling

Nick taking a bow at the top of the podium as they played the olympic theme song.  He won the State Special Olympics gold medal for the softball throw competing in down state Illinois…..

Nick Special Olympics

Nick competing in Bocce with his volunteer peer partner, Bobby.  Incidentally, Bobby (who is Nick’s brother’s best friend), has since gone on to become a Special Education Teacher in the north suburbs of Chicago…..

Nick special olympics bocce     nick special olympics bocce two

As my son entered high school, we had to put Special Olympics on the shelf.  Having a dual diagnosis of Down syndrome and autism made it difficult for Nick to participate without having a 1:1 aide at all times. This just wasn’t feasible.  As a parent, you can only do so much for your child.  I made the decision to put speech and occupational therapy first, rather than Special Olympics practice events, after school.  However, there were other inclusion opportunities for him in high school, which included Peer Partners and community trips with his respite workers.  Nick also participated in a wide range of P.E. programs with peer volunteers to assist and encourage him in high school.

Special Olympics has impacted the lives of athletes and volunteers for 5 decades.  Eunice Kennedy Shriver’s vision has grown from a flicker of the first torch flame, to an international movement.  “Special Olympics is dedicated to use the power and joy of sports to impact inclusion and respect – one athlete, one volunteer, one doctor, one teacher at a time.”  Congratulations to Special Olympics for 50 years of making a difference in the lives of individuals with intellectual and developmental disabilities!

eunice_dennedy

That’s what is in my noggin this week.

~Teresa 🙂

Follow Nick:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram #tjunnerstall

Twitter @tjunnerstall

 

 

 

 

 

 

Posted in Down syndrome, Down Syndrome Awareness, Dual Diagnosis Down syndrome and autism

Blog #200~World Down Syndrome Day

Blog #200~World Down Syndrome Day

“World Down Syndrome Day is Wednesday, March 21, 2018 and its purpose is to raise awareness around the world of what Down syndrome is and the vital role people with Down syndrome play in our society. The day has been officially observed by the United Nations since 2012 and the date — always on the 21st day of the 3rd month — is meant to highlight the uniqueness of the triplication (trisomy) of the 21st chromosome, which is the cause of Down syndrome.”

World Down-Syndrome-Day

World Down Syndrome Day is an opportunity for all of us to promote awareness, understanding and inclusion.  Lack of knowledge and understanding can prevent people with Down syndrome from being accepted and included in society.  The message is simple, every individual is unique, we all have value, and everyone has the right to live a happy and fulfilling life.  I heard a great quote the other day, “Down syndrome is just another way that humanity presents itself”.  

DSAwarenessMagnet

So, how can we promote awareness, understanding, inclusion and acceptance? 

Three Easy Ways To Promote World Down Syndrome Day:

1. Promote Down syndrome awareness on social media.  Rock your funky socks and T-shirts.  Let’s see them on Facebook, Instagram and Twitter.  Share inspiring, beautiful pictures, stories and videos of individuals with Down syndrome.  Tell us how an individual with Down syndrome has affected your life. Use hashtags, here are a few suggestions-  #wdsd #downsyndrome #321 #abilities #inclusion #funkysocks #downsyndromerocks #PROVETHEMWRONG

Nick Prove Them Wrong

My son Nick (pictured above) is 24 years old, and has Down syndrome and autism.  We’ve joined Noah’s Dad-Down syndrome awareness in their campaign #PROVETHEMWRONG.  More information at http://noahsdad.com/

2. Educate others about Down syndrome and encourage the use of person first language.  This means saying, “a person or individual with Down syndrome”.

Do NOT say:
* “A Down syndrome baby, child or kid.”
* “Down’s baby, child or kid”
* “Down’s”
* “He or she has Downs”

3. Encourage inclusion in your community.  What opportunities are available for meaningful jobs, volunteer work and other contributions for individuals with Down syndrome?  Are there any fundraisers like the Buddy Walk, funky sock campaign or other local DS support group activities, that you could get involved in?  Adults teens and children can volunteer to help with programs like the Special Olympics, Best Buddies peer program, and GiGi’s Playhouse.

Nick volunteering at GiGi’s Playhouse…..

nick-cleaning-gigis

Here’s an amazing business:  Bitty & Beau’s Coffee is more than just a place to grab a cup of coffee – it’s an experience. While the shop is run by people with intellectual and developmental disabilities and the customers love the products, they really come in for the unique customer service experience……..

bitty and beau coffee shop

Promoting awareness on social media, educating others about Down syndrome to use person first language, and finding inclusion opportunities are three great ways you can  support World Down Syndrome Day 3/21/18!  Help others to gain a better understanding, acceptance and inclusion for individuals with Down syndrome.  Let’s look past the diagnosis and see the uniqueness of each individual and their vital role to our society.  I can’t wait to see your posts on social media and rocking those funky socks for WDSD 2018!

We Help Two funky socks available at http://www.wehelptwo.com/ ………

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 Down syndrome, Down Syndrome Awareness

October is Down Syndrome Awareness Month

October is Down syndrome Awareness Month

DS-Awareness-Month

October is Down syndrome Awareness Month.  I’ve had the privilege of raising my son,  for the past 23 years.  Nick has Down syndrome and autism. He has touched my life, and those of so many others along the way.

nick-senior-alarm-pic

Down syndrome awareness is about promoting acceptance and inclusion of all individuals with Down syndrome.

FACTS about Down syndrome from 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 percent of cases, translocation accounts for about 4 percent and mosaicism accounts for about 1 percent.

*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 percent of children with Down syndrome are born to women younger than 35.

*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 years old in 1983 to 60 years old 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.

More information @http://www.ndss.org/Down-Syndrome/What-Is-Down-Syndrome/

NDSS_logo

Here are a few simple ways to promote Down syndrome awareness:

*Post something about Down syndrome on social media

*Send updates, pictures and tell your story to your family doctor and OB-gyn.

*Many local Down syndrome support groups have promotional materials, like books and bookmarks that can be distributed at libraries and schools.

*Many local DS support groups have public speakers who can talk to schools, businesses, community groups, hospitals, and other organizations.

*Support or volunteer for local fundraisers like the Buddy Walk in your community @http://www.ndss.org/buddy-walk/

*Encourage your kids to volunteer for Special Olympics and Best Buddies programs through their school.

Down syndrome journey

Thank you for supporting Down syndrome awareness this month!  That’s what is in my noggin this week.

~Teresa 🙂

 

 

 

 

 

 

Posted in Autism, Down syndrome, Recreation/Leisure and Special Needs

Blog #176~ Special Needs Summer Recreation Programs

Blog #176~Special Needs Summer Recreation Programs

The heat is on!  Are you looking into programs for your child with special needs this summer?  There are many types of programs available including camps, athletic and leisure programs.  A great place to start is to contact your local park district to see if they offer any special recreation programs.  For programs in here in Illinois click on this link: http:// www.specialrecreation.org

Here are some links for special needs summer programs:

Special Olympics- http:// www.specialolympics.org

Buddy Up Tennis- http:// www.buddyuptennis.com

Top Soccer- http://www.topsoccer.us

I Can Ride Bike Camps- https://www.icanshine.org

Easter Seals- http://www.easterseals.com

Gi Gi’s Playhouse- https://www.gigisplayhouse.org

American Camp Association- https://acacamps.org

Very Well has a list of Inclusive Sports Programs- https://www.verywell.com/special-needs-sports-programs-3106922

Friendship Circle List of Camps- http://www.friendshipcircle.org/blog/2013/02/13/25-summer-camps-for-individuals-with-special-needs/

Diveheart Scuba program- http://diveheart.org

Diveheart 2013 336

My son Nick (pictured above), is 23 years old and has Down syndrome and autism.  He has participated in many of these programs over the years.  These include local library programs, Special Olympics, Challenger Baseball League, Top Soccer, adaptive swim lessons (thru the park district special needs program), Diveheart scuba and I Can Shine Bike Camp.  During the summer months he also attended ESY (Extended Summer Year) summer school.  These programs helped him to learn new skills, have a structured routine, and develop friendships.

Nick at ESY Summer School…..

 

I Can Shine Bike Camp….

photo (124)

Many of these programs are available for children with special needs throughout the U.S.  My son Nick had great experiences in participating in these programs. It never hurts to just try a new program, you never know what might be a good fit!  If you know of a program you would like to share, please contact me.  I’m always updating my resource list on this website and sharing them with other support groups.  Here’s to a great summer 🙂

That’s what is in my noggin this week!

~Teresa 🙂

Follow Nick:

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:

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Posted in Autism, Down syndrome, Recreation/Leisure and Special Needs

Blog #124~Sports and Your Special Needs Child

Blog #124~Sports and Your Special Needs Child

Having a child with special needs and finding sports and leisure activities that suit their level isn’t always easy. My son Nick is 21 years old and has Down syndrome and autism. Nick has participated in Special Olympics, Top Soccer, and Challenger League Baseball programs.  Today I want to highlight the baseball program (The Challenger Division).

Special Olympics (http//www.specialolympics.org)

Nick stands on the top of the podium winning  the Illinois State Gold Medal in the softball throw….

Nick Special Olympics

Top Soccer (http//www.usyouthsoccer.org/programs/topsoccer)

Nick Top Soccer

Baseball-The Challenger Division http://www.littleleague.org/learn/about/divisions/challenger.htm

“The Challenger Division was established in 1989 as a separate division of Little League to enable boys and girls with physical and mental challenges, ages 4-18, or up to age 22 if still enrolled in high school, to enjoy the game of baseball along with the millions of other children who participate in this sport worldwide.  Today, more than 30,000 children participate in more than 900 Challenger Divisions worldwide.

Teams are set up according to abilities, rather than age, and can include as many as 15-20 players. Challenger games can be played as tee ball games, coach pitch, player pitch, or a combination of the three.

One of the benefits of having a Challenger Division is that it encourages the use of “buddies” for the Challenger players. The buddies assist the Challenger players on the field, but whenever possible, encourage the players to bat and make plays themselves. However, the buddy is always nearby to help when needed.”

Nick challenger league

Nick would hit off the tee and a volunteer buddy would help him around the bases. It was a great experience. Check out our Facebook page called “Down Syndrome With A Slice Of Autism” to view a wonderful video about The Challenge League. Or go to this link to see more @http://videos.littleleague.org/video/2015/09/09/What+the+Challenger+Game+means+to+Little-wzODBndzpy

I highly recommend looking into sports programs for your child with special needs. The Challenger League was a wonderful program to be involved in. Play ball, that’s what’s in my noggin.

~Teresa 🙂

 

Posted in Autism, Down syndrome, Physical Therapy and Special Needs, Speech and Occupational Therapy

Blog #100~20 Tidbits about Nick

Blog #100~ 20 Tidbits about Nick

To celebrate the 100 milestone of this blog “Down Syndrome with a Slice of Autism,” I made a list of 20 things about my son Nick.

Nick 20 years ago, what a little kewpie doll…..

Nick baby

1. Nick was born the day after his Dad’s birthday.

2. Nick was in NICU and on oxygen for one week due to an AV valve in his heart not closing.  Fortunately, this closed up within a week.  He was released from the hospital on Valentine’s Day which was also Ash Wednesday.

Aqua heart

3. Nick started early intervention with speech, occupational and physical therapy at 8 weeks old. They taught him sign language. He worked on a stability ball to build core strength long before it became trendy.

4. Nick was the youngest child to start horseback riding therapy in the early intervention program at age one.

5. We use to prop up pillows on the sides of his high chair to keep him from flopping over to the side, until his core became stronger.

Nick high chair

6. Due to his low muscle tone (a trait of Down syndrome) he didn’t walk or eat solid foods until he was 3 ½ years old.  We did a co-treatment with extensive OT and speech therapy with a feeding specialist using the Debra Beckman feeding technique

7. Nick doesn’t like yogurt or applesauce because I’d mix this awful smelling and tasting Nutrivene Vitamin Supplement into them.

8. To get Nick to pull up to stand, his brother would bounce ping pong balls on the coffee table to catch his attention. I also hung several music toys over the fireplace so he had to pull up to his feet to hear the music. (Hmmmm, maybe that’s why he’s obsessed with pushing buttons.) 🙂

9. Nick has been to the top of the Eiffel Tower and Notre Dame Cathedral.

Nick Eiffel Tower

10. He has been overseas three times including London, France and Spain.

11. Nick can replicate exact sneezes, high and low pitch, big and small ones.

12. He is so flexible that he can sleep with his legs crossed and folded all the way forward.

13. Nick’s a thrill seeker and will sign “more” as soon as a roller coaster ride is over.

14. He hates to wear hat and gloves no matter how cold it is.

Nick sled

Unless he’s indoors :)……….

Nick Winter Ninja

15. Nick’s favorite actor is Eddie Murphy, in the movies The Nutty Professor, Doctor Doolittle, and Norbit.

16. He doesn’t like any fruit at all (except raspberries, that is giving and getting them). He does LOVE salads.

raspberry

17. He won a gold medal in the softball throw event at the Illinois State Special Olympics.

Nick Special Olympics

18. Nick was evaluated for autism at age 5, but didn’t get a formal diagnosis until he was 11 years old.

19. Nick has a thing for dolphins and beluga whales.

Nick Kiss

20. Before the 30 fire alarm pulls, Nick would grab car remote keys and set the alarms off.

Hope you enjoyed the 20 snippets about Nick.  Thank you so much for reading and sharing Nick’s world for the last 100 blogs.   That’s what is in my noggin this week. 🙂

~Teresa

20 Year Old Nick…..

photo (120)

Follow Nick:

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Twitter @tjunnerstall

 

Posted in Autism, Behavior/ ABA, Down syndrome

Blog #70~When Down Syndrome and Autism Intersect

Blog #70~When Down Syndrome and Autism Intersect

 
I just finished reading the Woodbine House book, When Down Syndrome and Autism Intersect, A Guide to DS-ASD for Parents and Professionals. As always, Woodbine House delivers the goods. I only wish this book had been available fifteen years ago when I began to suspect that Nick had something more going on than just Down syndrome.

down syndrome and autism intersect

I started to notice little things at first. Around the age of five Nick started to bang objects and exhibit other odd behaviors. After doing some internet research I stumbled upon a sensory processing disorder checklist. Nick met many of the criteria which led me to believe this was the reason for those behaviors. When we attended the local Down syndrome support group functions I also felt that he didn’t speak as well as his peers.

Nick is more interested in his hand flapping than Santa 🙂
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So, I went to have an evaluation done to see if he might have autism. The results of this indicated that Nick did not have autism as he was highly social and his language deficits were a result of having verbal apraxia of speech. For more information on verbal apraxia of speech I would suggest reading this Woodbine House book, Speaking of Apraxia A Parent’s Guide to Childhood Apraxia of Speech:

SOA_mock (2)

Six years passed and as puberty was full on, Nick’s behavior and meltdowns became more violent and dangerous. The staff at his school struggled along as well. It was nagging at me. I brought up my concerns and the need for an evaluation for autism. The staff informed me that this was not necessary as there was already a primary evaluation of Down syndrome. We decided to have an independent evaluation done at Little Friends Center for Autism, http://www.littlefriendsinc.org. Getting the official diagnosis of autism confirmed my suspicions and gave me a sense of relief and validation. Most importantly, the formal diagnosis allowed for getting the services of the school district’s autism specialist. This specialist helped to identify what triggers set off meltdowns and was able to put a behavior plan in place along with a better picture communication system with proper training for the staff and myself.

Nick age 12, proudly stands on the podium winning the state gold medal in the softball throw at the Special Olympics…

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According to the Kennedy Krieger Institute, http:// www.kennedykrieger.org,  around 10-15 percent of children with Down syndrome also have autism.

For an autism diagnosis there are three areas of development that a person must show significant difficulties:

1. Social Functioning
2. Non-verbal or difficulties with communication
3. Restricted interests and activities

Some of the symptoms and behavior shown with children having Down syndrome and autism are:

 
*Significant lack of social response
*Difficulties with communication and reported loss of verbal and expressive language.
*Repetitive behaviors like hand flapping, spinning or rocking, fixation on inanimate objects (strings, fans, mirrors, water, etc..)
*Sensory issues including the intensified sensitivity or need for more sensory input
*Behavioral challenges including frequent tantrums and physical violence

 
The book, When Down Syndrome and Autism Intersect contains a great deal of information on health issues and gives practical information on tackling the complex world of raising a child with Down syndrome and autism. My best advice is this, if you suspect that a child with Down syndrome has something else going on then run; don’t walk to get a firm diagnosis. There are more services that become available to help with challenging behaviors, communication and learning for our kids. That’s what is in my noggin this week! 🙂
~Teresa

Posted in Down syndrome, Physical Therapy and Special Needs

Blog #37~ Just Do It!

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Blog #37~ Just Do It!

This week I want to hop on the fitness bandwagon.  I ‘m not really hopping on it.  2013 marks 30 years of teaching in the fitness industry.  The gym gets busy in January with folks coming in with their resolutions to get in shape.  Are there any trade secrets?  How can someone like Nick who has Down syndrome and autism keep fit?

Buff Nick is too cool by the pool….. 🙂

Nick 2 (2)

First of all there are physical attributes that are associated with Down syndrome which should be considered.  Here is what I pulled off the following website, Livestrong.com is a great resource for more than just its well known cancer support:

http://www.livestrong.com/article/367865-exercise-safety-tips-for-those-with-down-about…”syndrome/#ixzz2Hu6k2Yg3

“Injuries may be caused by many of the symptoms of Down syndrome, including an underdeveloped respiratory and cardiovascular system, poor balance, perceptual difficulties, hypotonicity — muscles that have the ability to stretch far beyond their normal limits — hypermobility of the joints, and ligamentous laxity, which is flexibility of the joints associated with an increased risk of dislocation, says the National Center on Physical Ability and Disability or NCPAD. In approximately 17 percent of people, there may be a severe cervical cord disorder known as atlantoaxial instability that is characterized by laxity between the first and second cervical vertebrae. This makes spinal cord injuries much more likely. If a physician allows exercise, strict monitoring is important to avoid injury to the spinal cord and other areas of the body.” 

Nick had a spinal x-ray which ruled out atlantoaxial instability.  This screening should be done before any exercise program is implemented.  Because of his low muscle tone he received physical therapy and early infant and childhood intervention programs which showed us how to incorporate exercises into his daily routine and play time.

Here are just a few things we put into place at home:

*Sit your child on a small ball and do music time and bubbles to build core strength.

*Create a mountain with a bean bag chair and blankets.  Put a preferred music toy at the top so your child will have to climb up it to reach it.

*Tack musical toys up so your child will have to pull up to stand to play with them.

*Push toys can sometimes be too light, so add some weights to them so it is easier for your child to be stable and push them.

*Bean bags work great to work on vocabulary.  Line up a few flash cards and have your child toss the bean bag to the word you want them to recognize and speak.

*Balls, balls, balls.  Get a mini basketball hoop, Slo Mo balls and nerf balls are easier to catch.  I use to have Hank bounce ping pong balls on the coffee table to entice Nick to pull up to stand.

slo mo ball

Now that he is older I have incorporated more household chores in his routine like vacuuming, taking laundry baskets up and down the stairs, and unloading the dishwasher.

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In school he takes P.E. and enjoys swimming, walking on the treadmill and even yoga.  Of course his favorite is dancing.  He slaps those headphones on and goes hard.  There are many programs through your local park district as well as Special Olympics that can enrich the lives of people who have special needs.

It’s all about consistency in having an active lifestyle, which should begin in childhood.   Increasing activity will help minimize obesity, decrease cardiovascular and type II diabetes risk factors. For aerobic and strength training, make sure adolescents participate in recreational and community activities.

What about the rest of us?  The same holds true about consistency in exercise and dietary intake.  It’s not rocket science.  Calories in and calories out is what it boils down to.  If you consume more than you burn then you are going to gain weight.

 Here’s my top 10 Tips…….

  1. Get medical clearance before starting any exercise and dietary program.
  2. It’s a good idea to enlist the help of a personal trainer who can help you set goals and a timeline. Be sure to ask about the FITT Principle when setting up your program (Frequency, Intensity, Time and Type of exercises.)
  3. Carve out a reasonable time of day that you can commit to and make it a part of your routine like brushing your teeth. (You wouldn’t skip brushing your teeth would you?)
  4. Pick activities that suit your interests and will keep you motivated.  Mix up your workouts so you incorporate all 5 components of fitness (Cardiovascular strength, muscular strength, muscular endurance, body composition and flexibility.)  Total fitness!
  5. Every little bit adds up.  Take the stairs, park further away, do some triceps dips while you wait for the shower to warm up, etc…
  6. Use it or lose it.  Did you know you start to lose training effects after just 48 hours of inactivity?
  7. Don’t obsess with the number on the scale. I always say your jeans don’t lie!
  8. Shop the outer aisles of the grocery store, fresh is best.  If you can’t pronounce the ingredients on a label it might be wise to leave it on the shelf.
  9. Have a support system in place.  Get some workout buddies that will hold you accountable.  There are also some great phone apps to help track and keep you motivated.  Check out the app called “My Fitness Pal.”
  10.  All in moderation, when it comes to eating.  Don’t deprive yourself of your favorite foods now and then.  If you know you are going out for a nice meal plan to eat lighter that day.  Watch those serving sizes too.  I love the visuals like one serving size of protein=a deck of cards, one serving size of pasta=a tennis ball, one ounce of chees=a pair of dice.  Check out sparkpeople.com and foodnetwork.com for more of these tips.

Finally let me borrow a slogan from Nike, “Just do it!” That’s what is in my noggin this week.  Cheers to feeling good and having fun while you’re at it.  Nick and I highly recommend putting on your favorite music and dancing it out!

photo (115)

~Teresa 🙂

Posted in Down syndrome

Blog #7 Mama Mia

Mother’s Day circa 1969, my brother Tom and younger sister Laura and I get up and make breakfast for our Mom.  It takes us at least 3 or 4 tries and subsequent tosses of undercooked and burnt pancakes into the trash. But finally we get the griddle just right and pull off a couple of edible ones.  The tray is prepared with orange juice, her favorite strawberries and a small, clear vase filled with bright orange pomegranate flowers from the tree on our backyard patio.  This year I had made a gift at school that I was especially proud of.  I found the most perfect brown conch seashell and stuffed the opening with cotton and covered it in red velvet to make a tiny pin cushion.  This was my favorite gift I had ever given my mom.  Oh how proud the three of us were for our accomplishment.

As a mother of two boys, I think back on what were my favorite presents.  Without a doubt it was the special gifts and handmade cards they each made at school over the years.  I still use the recipe box that Nick made in preschool with a picture of him clapping on the front of it. Hank handcrafted a colorful ceramic bowl that I treasure. Seeing their faces so proud is perhaps one of the greatest gifts of all.

Over the years I have been asked often on what it takes to be a mother of a child with special needs. In many ways it is the same as for a typical child but it takes a greater amount of time, energy and perseverance. Milestones are not met and checked off the chart at the yearly physicals like a typical child. A large chunk of the schedule is carved out for working with your child at home and taking them to physical, occupational and speech therapy. Having my son, Hank just 19 months older gave me a good idea of what the benchmarks were supposed to be.  However, I realized quickly that Nick was going to do things in his own time.  Nick’s time was much slower than a snail’s pace.

Nick ( 2 months old) with Grandma Babs

Let me pause and offer the quick facts about Down syndrome. Wikipedia  states that Down syndrome  also known as trisomy 21, is a chromosomal condition caused by the presence of all or part of an extra 21st chromosome It is named after John Langdon Down, the British physician who described the syndrome in 1866.  The incidence of Down syndrome is estimated at 4.6 per 10,000 births. Often Down syndrome is associated with a delay in cognitive ability and physical growth, and a particular set of facial characteristics. The average IQ of young adults with Down syndrome is around 50, compared to normal children with an IQ of 100. A large proportion of individuals with Down syndrome have a severe degree of intellectual disability.

Nick with his brother Hank, with his low muscle tone we constantly had to prop him up for pictures.

Individuals with Down syndrome may have some or all of the following physical characteristics: microgenia (an abnormally small chin)[ an unusually round face, macroglossi (protruding or oversized tongue), an almond shape to the eyes caused by an epicanthic fold of the eyelid, upslanting palpebral fissures (the separation between the upper and lower eyelids), shorter limbs, a single transverse palmar crease (a single instead of a double crease across one or both palms), poor muscle tone, and a larger than normal space between the big and second toes.

Brushfield spots are the tiny flecks that shine in the iris. One of the characteristics of  some individuals with Down syndrome. By the way Nick grabbed the camera and did his own self shot here 😉

Health concerns for individuals with Down syndrome include a higher risk for congenital heart defects, recurrent ear infections that may lead to hearing loss, obstructive sleep apnea, thyroid dysfunctions, and obesity.”

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Here is how Nick fit with his development:

Crawling- Average age= 14 months (range 9-19 months) / Nick= 24 months.

Sitting while supported with own arms- average age= 8 months (range 5-15 months) / Nick= 12 months.

Eating solids-Average age= 8 months (range 5-18 months) / Nick=40 months

Walking independently-Average=23 months (range 13-48 months) / Nick=40 months.

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Nick at age 9 months with Grandpa Jim. He still looks like a rag doll….

While Nick developed much slower than the averages above, he did hit the marks and this proud mama can still taste the sweet victories of each glorious triumph!

Yay, he is sitting up supporting himself with his arms at age 1!

Who would have ever predicted that the low tone boy with wobbly legs that didn’t take off walking until 3 ½ years would run like a cheetah and win a silver medal at the Special Olympics in the 100 yard dash. And the year before, in fifth grade he became a state gold medalist in the softball throw down in Bloomington.  Nick never got the significance of his medals.  He was more excited about standing on the podium and dancing side to side as they played the Special Olympics music theme on a portable jam box.  On the other hand, I was snapping photos like a crazed paparazzi photographer. 😉 He fought hard as we pushed him constantly for 12 years….. and look he won……Oh *Mama Mia!

State Special Olympics Gold Medalist!

Up on the top of the podium, taking a bow!

That’s what is in my noggin this week.  Until next week, may the milestones you strive for and meet be the sweetest of victories :).

~Teresa (aka Mama Teresa)

*Mamma mia (literally “my mother”) is an Italian interjection, used in situations denoting various kinds of emotions of surprise, fear, rejection, and joy.