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 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