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 Down syndrome, Health Issues and Special Needs Child, Physical Therapy and Special Needs, Speech and Occupational Therapy

Blog #127~So, Your Baby has Down syndrome

Blog #127~So, Your Baby has Down syndrome        

In October everything turns pink for Breast Cancer Awareness Month. But did you know it’s also Down Syndrome Awareness Month?

Twenty-one years ago I gave birth to my son Nick. The doctor detected several markers that he might have Down syndrome.  The next day, a hospital social worker handed me two brochures about Down syndrome. That is was what I had to work off of.

Here are the facts about Down syndrome courtesy of The National Down Syndrome Society, www.ndss.org:

  • 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.

I think back on that 33-year-old mom who was unsure of her future. What advice would I give her today?

Down syndrome journey

First, I would say that everything is going to be OK. The path will be different and move slower. But your child will work through the low muscle tone with the help of early intervention programs. The benchmarks like sitting up, crawling, walking and eating solid food will take longer to reach. Try to be patient and rest assured that your child will hit them.

Nick, age one….

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The next thing I would tell her is that there will be angels that light a path along the way. Embrace them and incorporate what you learn at home. The speech therapists will teach him how to blow bubbles, work on lip closure, feeding and to use sign language along with songs to communicate. The occupational and physical therapists will guide him in fine and gross motor skills. The teachers will hold the lantern and illuminate his mind. The social support groups will be your shoulders to lean on.

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Finally, I would share this message. Your baby was born with Down syndrome, but they are a person first. People with Down syndrome experience the same emotions that you and I do. Your life will change for the better as you savor the sweet victories. They will steal your heart and touch others in ways you can’t imagine. Your child will bring a unique perspective of seeing the best of the human spirit.

Nick in Sox hat

This is my advice to the young mother who just gave birth to a beautiful baby, who just happens to have Down syndrome. That’s what is in my noggin this week. 🙂

~Teresa

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

My Guest Blog~So Your Baby Has Down Syndrome

My Guest Blog~ So Your Baby Has Down Syndrome

Recently I was contacted by an associate editor at Social Work License Map, a guide to social work licensure that clarifies the steps needed to become a social worker in any state.  This social work site,  also focuses on specific social work advocacy. I am very excited to share that my website, “Down Syndrome With A Slice Of Autism” will be included here.  In addition, I did a guest blog spot which posted live last week.  The guest blog is entitled, “So Your Baby Has Down Syndrome.”  Just click below to view:

http://socialworklicensemap.com/guest-blog-so-your-baby-has-down-syndrome/

October is  Down syndrome Awareness Month and there are so many good stories in the news.  I will continue to post these on the Facebook page for you to enjoy.  Thank you for reading and sharing Nick’s world.  That’s what is in my noggin this week!

~Teresa 🙂

DSAwarenessMagnet

 

 

 

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 ICU and on oxygen for one week due to an AV valve in his heart not closing. He was released from the hospital on Valentine’s Day which was also Ash Wednesday.

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.

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.

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.

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

15. Nick’s favorite actor is Eddie Murphy, followed by Will Farrell and Adam Sandler.

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

raspberry

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

Nick Special Olympics

18. Nick was tested 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.  Preview for next week, Blog #101~ A list of really cool things about Nick by several of his teachers. 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…..

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Posted in Down syndrome, Physical Therapy and Special Needs

Blog #72~Down Syndrome and Low Muscle Tone

Blog #72~Down Syndrome and Low Muscle Tone

October is Down Syndrome Awareness Month.  In Blog #26, located in the October 2012 archives, there is a complete overview about Down syndrome.

DSAwarenessMagnet

This week I want to put a lens on one of the physical traits of having Down syndrome.  Hypotonia, or low muscle tone is common in almost all babies with Down syndrome.  The appearance is floppy and the muscles are flaccid. As soon as I touched my son Nick after he was born, I could feel this.  He felt like a rag doll.

The good news is that hypotonia generally improves over time with early intervention and physical therapy.   Within eight weeks, we met with the early infant intervention team and began the work to confront his low muscle tone.  Right away, we were instructed to roll up blankets and stuff them on either side of Nick when he was sitting in his carrier.  Since the muscles are so floppy, there is a tendency for the limbs to dangle open.  We then started from the top and worked down.  The first step was to get the neck strong.  We incorporated a lot of tummy time providing lots of bright, colorful, and contrasting toys that would be stimulating.  His brother Hank helped out by pushing the buttons on musical toys so that Nick would lift his head up.  This would help develop more alertness as under arousal is typical for babies having Down syndrome.

Everything is ready for tummy time, look at that scrawny baby 🙂 …….

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Once he was able to support his head, the early infant team began to work on building strength in his trunk.  At first he had to be held at the shoulders while sitting on a play ball.  The facilitator would lead the group with songs and blowing bubbles.  The babies would both track the bubbles and try to pop them with their fingers.  Gradually, the therapist was able to hold Nick at the chest, and after several months hold his waist while he worked on the ball. The physical therapist told us that Nick would not be able to pull up to stand or walk until his core was strong.  This meant when he could sit on the ball supported with her hands down on his hips. This took a very long time for Nick.

We propped up pillows in his high chair so he would flop over to the side. His brother Hank, keeping him entertained…….

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A special chair was provided by the early infant intervention program.  Nick’s trunk was still weak and he had a lot of trouble sitting upright…….

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Take a look at the average gross motor milestones:

Sitting alone-

Typical age 5-9 months

Down syndrome 6-30 months

Nick 22 months

Crawling-

Typical age 6-12 months

Down syndrome 8-22 months

Nick 28 months

Walking-

Typical age 9-18 months

Down syndrome 1-4 years old

Nick 3 ½ years old

As you can see, Nick’s low muscle tone affected his development in all of these gross motor areas.  After his first birthday, the physical therapist suggested we try doing horseback riding therapy with Nick. He was the youngest person they had ever tried at this facility.   We made the trek out to Tomball, Texas for these sessions for over a year.  Nick gained a lot of trunk strength during this time.  Keep in mind, not only were the muscles weak but also had less endurance.  Doing the sessions on the horse helped with increasing his endurance and the sensory input was very stimulating.

Giddy up Nick……

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After a year of hard work, he finally sat on his own!  Nick with his cousin, Austin

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Once Nick was able to sit up and crawl we began to find creative ways to get him up on his feet.  Hank would often dangle his favorite musical toy at the top of the bean bag chair.  As the music blared and lights flashed, Nick would climb up the makeshift mountain to reach the toy.  Around this time, I also began redecorating the living room.  I mounted several musical toys above the fire place so if he wanted to get to them, he had to pull up to stand.  His brother also enticed him, bouncing ping pong balls on the coffee table.  He would crawl over, pull up, play and laugh with Hank.

It was a long, slow rode to get him up and walking.  Nick had to work a lot harder to build his strength, endurance, alertness to defy the effects of low muscle tone and under arousal.  Hard work always pays off, and gets you to the top of the podium!

Nick in Middle School, brings home the gold 🙂

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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!

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~Teresa 🙂