Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism

Blog #182~Hurricane Harvey and the Texas Way

Blog #182~Hurricane Harvey and the Texas Way

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As a native Texan, I grew up just a few blocks from Galveston Bay.  This was our playground growing up.

Seabrook watching the boats come in, with my siblings in the early 70’s…..

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I’ve ridden out my share of hurricanes and tropical storms over the years.  Hurricane Harvey has pounded the Texas Gulf Coast.  It continues to churn, with record rainfall that is causing catastrophic flooding.  I’ve been thinking a lot about my fellow Texans, and dealing with such disasters.  Much of what has giving me strength over the years of raising my son Nick, who is 23 years old, and has Down syndrome and autism, comes from the mentality of the “Texas way”.

The author, John Steinbeck wrote in part, that “Texas is a state of mind”:

“For all its enormous range of space, climate, and physical appearance, and for all the internal squabbles, contentions, and strivings, Texas has a tight cohesiveness perhaps stronger than any other section of America.”

Texans are incredibly proud of where they come from.  The people are friendly to one another, and will go out of their way, to help each other out.

I recall riding out Hurricane Alicia in our home, back in 1983.  The category 3 hurricane hit hard with winds up to 115 mph, during a long, pitch black night.  The next day, we crawled out from under the mattress propped up in the narrow hallway.  We found tree limbs and debris covering the yard and had no electricity.  Our neighbors banded together, bringing their chain saws to clear the rubbish.  We pulled up lawn chairs, and portable gas stoves, to cook up the food that was quickly thawing in the deep freezer.  We stood in long lines together, as comrades waiting to get ice bags, sharing stories together.  For two weeks, with the power lines down.  There was no electricity in the humid and unbearable August heat.  What I remember the most about this time, was the sense of camaraderie.  Everyone was pitching in, lending a hand, and working together.

Hurricane Alicia, 1983……

Hurricane Alicia 1983

Watching the news over the weekend, I again, was witness to this sense of community and teamwork.  The riveting images of civilian Samaritans bringing their boats, rafts, kayaks and canoes in to help with rescue efforts.  Volunteers coming in with high-profile pickups, and dumpster trucks being used to save other human beings.

Rescue efforts after Hurricane Harvey…….

Harvey rescue

I love this message from George and Barbara Bush, to their fellow Houstonians and Texans affected by Harvey, expresses the spirit of Texans: 

“We are praying for of our fellow Houstonians and Texans affected by Harvey, and truly inspired by the flotilla of volunteers–points of light all–who are answering the call to help their neighbors.  We salute them, the first responders and local elected officials for their grit and determination in the face of this extraordinary storm.  This we know: Houston and Texas, will come together and rebuild.”

That’s exactly what it is–coming together, and helping each other, and never backing down.  That’s the Texas way.  When you are down, you’re not out.  That’s when you pick yourself up by the bootstraps, brush off the dust and push through.

This road of raising my son with Down syndrome and autism has not always been an easy one.  The hurdles have been tough. Reaching milestones, the long process of toilet training and the intense meltdowns during puberty took their toll. I wouldn’t have survived, without reaching out for help. I found a community of parents who had children with a dual diagnosis of Down syndrome and autism.  This community saved me.  I know that my strong roots as a Texan, has kept me upright, in the process.  That grit and determination, has helped to push me through some of the roughest times.

The power of human spirit coming together can help to overcome the worst of adversities.  Jumping in and helping each other out, with a warm smile, IS the TEXAS WAY.  Texas will be drenched and soggy for a while, but they will never give up. Texans will pull together, become cohesive, and they will survive!

Please continue to pray, as the water continues to rise up the driveways, and into the homes, of my family and friends in Texas.  I know that they will come together, with resiliency, and get through this catastrophic event.

Here is a link if you would like to help and share on social media: The Houston Flood Relief Fund@ https://www.youcaring.com/victimsofhurricaneharvey-915053

That’s what is in my noggin this week.

~Teresa

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Posted in Autism, Education and Special Needs

Blog #58~ Dad’s Tool Kit

Blog #58~ Dad’s Tool Kit

How does a man growing up land locked in Hot Springs, Arkansas end up racing sailboats on Galveston Bay?  That’s my Dad.  Indulge me this week, I am missing him.  Tommy graduated with a master’s degree from The University of Arkansas and landed a job at as a Research Chemist at Shell Oil Company which brought him to the waters. He built his first boat on his own and fell in love with the sailing.

Dad on the boat he built……..

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I think about lessons that I learned from him. It was never formal like those polite moments in the pristine living room between the Beaver and Ward Cleaver.  I just noticed things.

Ward Cleaver

Here’s what I picked up from Dad’s tool kit………

 1. Keep your car clean and vacuumed

Dad was always washing cars, rubbing the interior with a rag and kept them vacuumed on a regular basis. He kept the 1974 green Nova sedan and later the 1981 beige Chevy Chevette immaculate.  I cringe when I see a car with empty cola drinks and bags of fast food discarded in the back seat like it’s a dumpster.  Dad showed me that it was a sign of respect to take care of your valuables.  So there laid the seeds for my need to have order.

When it comes to raising children you need order, especially with a child such as Nick, who has Down syndrome and autism.  A predictable and orderly environment helps him make sense of his world and be able to function better.  It helps me as well to feel in control and stay anchored.

2. Dab it with Mercurochrome™

Dad skipped the Band-Aid opting for Mercurochrome™ instead.  He would douse his cuts and scrapes with this awful red-orange stained antiseptic.

mercurochrome

When I was a kid there was a wart on my leg that would not go away. The over-the-counter treatments from the drugstore didn’t do a thing to rid it.  One evening Dad brought some dry ice from work.  He applied it to the wart.  Within a matter of days, it disappeared.  He and mom made sure I had my own fully loaded toolbox when I moved into my own home.  When I started gardening, he gave me one of his sturdy shovels.  I still use that same shovel each spring when I plant the tomato seedlings. In a way, he is right there with me.

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Sometimes finding your own way to take care of things can produce better results.  Over the years I have learned to find my own solutions when Nick came upon a hurdle in his development.  You can’t expect the IEP team members, therapists or doctors to have all the answers.  Sometimes you have to dig on your own to figure out what will work best for your child.  Don’t settle for just a Band-Aid.

3.Read the Wall Street Journal daily

Every morning Dad read the paper and did the crossword puzzle.  Upon retirement he became a regular at the La Porte Library reading the daily Wall Street Journal there. What a thirst for knowledge.  None of us could keep up when Jeopardy was on. Just as Alex Trebek spoke and barely finished his phrase my Dad would have the answer.

Never stop reading and educating yourself. It is essential for parents who have a child with special needs to keep up with the latest news, research.  Education is empowerment and as a parent you owe it to your child to be an informed advocate.

4.Why not give it a try?

In the winter, when the garden was dormant, Dad would bake long loaves of French or pumpernickel bread.

Beard on Bread

For a while Pops got on this Asian cuisine kick.  Once we attempted to make our own eggroll skins.  It was labor intensive and we never mastered the art of getting them thin enough. In hindsight I would suggest just buying the readymade skins at the store.

Dad also travelled extensively across the world when he retired. Whether it was flying across a zip line in Costa Rica in his 70’s or dancing Swan Lake wearing a tutu along with stripped tube socks and Sperry Top Siders  while on a cruise in Russia, he embraced it fully.

Having a child with special needs can bring many limitations to a family.  It’s easy to stay in the safe shell of home but there’s a problem with this.  Your world can become too narrow.  Al and I have tried not to let this happen. Nick has traveled with us on vacations including three different trips overseas to England, France and Spain.  Was it easy?….. NO!

Can it be done?…… YES!

Big Bend in London along with Grandma Theresa (oh no not the fanny pack again)…… 🙂

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I never imagined Nick could go scuba diving. But he did! 🙂  If you haven’t read this story check it out, (See Blog #53~ Scuba, Really?  located in the May 2013 archives).  Sometimes the bread comes out perfect.  Other times it’s a big flop, like those sad little egg roll skins.  But you have to give new things a try.  Grab onto that zip line and just hold on tight!

5. There ain’t no crying in baseball

no crying in baseball

Dad loved this movie, A League of Their Own.  A few years ago, at age 76, he got the diagnosis of stage four lung cancer.  I will never forget the message he sent via email quoting that line in the header of his note to family and friends.  Here it is in part……

“While you all are now sitting there long-faced and maybe teary, let me tell you some of the good side: 

I’ve had 76 years (so far) of a great life with a wonderful family and friends.  Over 17 years of retirement, with trips to Europe, Asia, Africa, South and Central America, down under, to mention a few.  And a terrrific  2nd life as an Ensign sailor/crew.”

Raising a child with special needs has brought many obstacles.  Nothing ever comes easy.  Often things seem impossible and unbearable.  Sadness is part of life.  I’ve had my share of pity parties over the past 19 years.  But Dad showed me how to handle problems with quiet dignity.  As I re-read his words above I am reminded of the fact that there are many beautiful things in life that you should always try to keep in the forefront.  Nick’s infectious smile and sense of humor…. Well it’s pretty “terrrrific!” 🙂

Nick and his cousin, Austin playing with Paw-Paw Tommy…..

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Hope you enjoyed some of the tools I have picked up from Pops over the years.  That’s what is in my noggin this week.

~Teresa