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

Blog #197~My son with Down syndrome, 24 years ago: What I learned

Blog #197~My son with Down syndrome 24 years ago: What I learned

Down syndrome journey

Birthdays are often a time to reflect back on our journey in life.  My son Nick, will be turning 24 years old next week.  I didn’t know until after he was born, that he had Down syndrome.  Honestly, I was more concerned for his health more than anything.  After a week in ICU, Nick was released.  The doctor told us to go home and love are baby.  He cautioned me that Nick might not be able to nurse properly and gain weight without having to use a feeding tube.  I thought to myself, “game on, challenge accepted”.  I rolled up my sleeves and got to work.  I hated all those wires that had been hooked up to him in ICU.  I certainly didn’t want any more hooked up to my son, moving forward.

The feeding tube never entered the equation.  Instead, what I found is that we had to work harder to be successful not only in feeding, but in reaching all developmental milestones.  Within 8 weeks, Nick started an Early Childhood Intervention (ECI) program.  Low muscle tone is a trait of having Down syndrome.  The physical, speech and occupational therapists along with his teacher provided strategies to help build strength and endurance.  More important, they gave us pragmatic ways to incorporate these at home in our daily routine.

Nick propped in high chair, supported with a bolster under his legs and pillows on the sides…..

Nick low tone high chair

That is how it all started 24 years ago, with Nick.  I’ve learned a few things while raising my son especially in the early years.  First, is that the developmental milestones take longer to hit, but each mark was met with hard work and persistence.  In addition, find the people and resources that will facilitate, motivate and help to modify your child’s environment to allow them to grow and flourish.  It’s important to keep your expectations high, just as you would with any other child.  But keep in mind, you have to be very patient, because it can take longer to roll over, crawl, walk and feed.  If you feel like your child is stalled in development, then look for other therapies and strategies to push them forward.  This was the case when Nick was a year old and unable to sit up on his own.  His core was so weak due to low muscle tone.  I made the decision to try equine (horseback) therapy which helped him immensely.  This brings me to one more lesson I learned.  Look at finding the RIGHT therapies and services, instead of just adding in more.  Each child is individual and motivated in different ways.

Nick doing horseback therapy in 1995…..

Nick horseback therapy

Consider a variety of strategies, such as infant massage, sensory integration, motor play with proper positioning, and oral motor exercises that can accelerate growth.  Keep in mind what interests your child has, and use those tools to build into play and daily routines at home.  Nick was very motivated by music and enjoyed oral motor activities like blowing and popping bubbles.  His physical therapist would have him sit on a small ball while blowing, tracking and popping bubbles.  Nursery rhymes and signing were also incorporated while sitting on the ball, which acted as a dynamic surface to build core strength.  Siblings can be great with play to stimulate movement and arousal for your baby.

Nick with his brother Hank……

Nick and Hank babies

The challenges associated with low muscle tone and Down syndrome can be met with hard work, persistence, and finding the right support and therapies that will facilitate building muscle strength and endurance for your child.  Early intervention will help to build a solid foundation which allows your child to become their best self.  Nick’s come a long way since the days where he was propped up with bolsters and pillows.  He is a strong, funny, helpful, mischievous and happy young man. Next week, we will be on vacation in Vail to ring in #24.  No blog next Monday, but you can catch Nick on social media. Happy Birthday to you Big Guy!

Nick in Key West, over the Christmas holidays 🙂 ….

Nick Key West

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, Down syndrome, Dual Diagnosis Down syndrome and autism

Blog #162~ Horseback Riding Therapy

Blog #162~ Horseback Riding Therapy

nick-horseback-therapy

Horseback riding therapy, also known as Equine Assisted Therapy, involves interactions with horses for individuals with and without special needs, including those with physical, cognitive and emotional issues.  Hippotherapy is another term used by physical, speech, and occupational therapists to reach their patients on a personal level.

horseback-therapy

There are many benefits such as motor, emotional and sensory sensations that come with riding a horse. Horseback riding gently and rhythmically moves the rider’s body in a manner similar to a human gait, to improve  in flexibility, balance and muscle strength.

At age one, my son Nick was unable to sit up by himself due his low muscle tone, which is a trait of having Down syndrome.

Nick at age one…..

nick-low-tone-high-chair

We had to prop him up in the high chair, so he wouldn’t slide down or slump to either side.  Nick was receiving physical, occupational and speech therapy in his early intervention program.  Shortly after his first birthday, we enrolled him in a horseback riding therapy program.

Person’s having Down syndrome please note:

“Prior to considering hippotherapy as a treatment strategy for your child, it is important that they have current cervical x-rays to ensure the atlantoaxial joint (or C1-C2) is not at risk for dislocation.  Some people with Down Syndrome also may have a condition known as Atlantoaxial Instability — a misalignment of the top two vertebrae of the neck. This condition makes these individuals more prone to injury if they participate in activities that overextend or flex the neck. Parents are urged to have their child examined by a physician to determine whether or not their child should be restricted from sports and activities that place stress on the neck injury.”

In less than nine months, of incorporating the horseback riding therapy, we noticed a vast improvement in Nick’s posture both in strength and endurance.  At first he couldn’t tolerate a helmet as it weighed him down, (as you can see in the first picture of this post).  But soon, he not only wore a helmet, but was able to keep his head upright, along with and sitting up better.

Nick with his brother, Hank, taken nine months after starting horseback riding therapy…

nick-sitting-with-hank

We decided on horseback riding therapy, initially to help our son gain trunk strength.  However, we soon realized there were many additional benefits that came along with it.  Not only did Nick ride on top of the horse, he also learned how to care for the horse by feeding, patting and brushing them.  This helped to create an emotional bond and opened up new sensory experiences that he couldn’t get in a clinical setting.  Riding a horse helped to wake up the sensory preceptors, making for a fun and motivating experience for him.

Horseback riding therapy was a wonderful experience for our son with special needs. The horses were gentle friends that helped Nick get stronger, build relationships through unspoken communication, and taught him about responsibility.  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