Posted in Down syndrome, Down Syndrome Awareness, Parenting Special Needs

Blog #202~ Down syndrome, A New Beginning

Blog #202~ Down syndrome, A New Beginning

So this just happened, I flew back to Texas over the weekend to be with my niece, who is also my God-daughter.  Courtney recently gave birth to twin boys.  Shortly after their birth last December, she called me with the news that one of the babies might have Down syndrome. The first thing I felt was excitement inside, knowing that God has many blessings coming her way.  I told Courtney that everything was going to be okay, and that I’d be there for her every step of the way.  I know this to be a fact, because I have been blessed for the past 24 years with my son, Nick.

My niece didn’t know that one of her twins would have Down syndrome until after she gave birth.  Just as I did, the initial shock can take your breath away and a myriad of emotions come at you in waves.  However, like me she has rolled up her sleeves and embraced this diagnosis fully.  I couldn’t be more proud of her.

The twins Gannon and Greyson 🙂

Gannon and Greyson

Courtney jumped right in becoming an advocate for her son, Gannon.  Last month, she gave a presentation to her older son’s elementary school class on World Down Syndrome Day……

Gannon WDSD

For World Down Syndrome Day, Courtney had special shirts made for her immediate and extended family, as well as friends…….

Courtney and family

Here’s my son, Nick wearing his shirt to support #gannonsjourney and World Down Syndrome Day….

Nick Down right perfect

There is a lot of love felt in their home, along with a load of testosterone, with four boys under one roof.  Her two little dogs and cat lay on the couches close by, seemingly like protectors providing comfort as we sat and visited.

Gannon and me

It was a great weekend holding, feeding and loving on the twins, along with a few games of Battleship, Candyland, Toilet Trouble and snap chat photos with the older boys.  In between all of this, we had a chance to talk about our experiences together.  During the course of these conversations, I flashed back 24 years ago when I gave birth to Nick.  I told Courtney and her husband Patrick, how the pediatrician pointed out the initial markers that might indicate my son could have Down syndrome.  My doctor gently showed me the brushfield spots in my babies eyes, the larger gap space between the first two toes, and the feeling of low muscle tone in his body.  Courtney gasped when I mentioned my pediatricians name, she thought I was joking.  It turns out that they have the same pediatrician as I did!  Not only that, her husband (who also lived in this same area outside Houston) had Dr. K as his pediatrician growing up.  Courtney started to cry as we found the similarities in our lives being so serendipitous.  They were happy tears.

Who would ever predict that this little niece and God-daughter of mine would follow such a similar path?  At the moment this photo was taken, 28 years ago I was just a doting aunt to her…..

Courtney and me

Here we are 29 years later…..

Courtney Gannon and me

In December, after the twins were born, her pediatrician pointed out similar markers of Gannon possibly having Down syndrome.  I told Courtney over the phone, that she had this.  She was already ahead of the game, with her experience having Nick as her cousin.

Courtney and Nick, 1994…..

courtney and nick

Courtney and Nick, 2010………

photo (116)

I handed my niece this journal, on Saturday.  It felt as though I was passing the baton over, as she starts her own journey…..

Journal

The journey will be filled with highs and lows as she navigates her son having Down syndrome.  As the pen moves across each page, her eyes may be filled with tears during the struggles as he grows.  But there will also be many smiles when he triumphs the milestones of crawling, sitting up, walking, feeding and so much more.  Each benchmark will take longer to reach and require much more work.   But that is what makes these victories even sweeter.  My niece is just beginning this new path, and I both smile and take a deep breath inside, knowing what lies ahead.  My son has changed my life forever and filled me with God’s grace.  Like his cousin Nick, Gannon will touch many lives and teach lessons of gratitude in the process.

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

Follow Gannon #gannonsjourney

 

 

 

 

 

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