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…..

3 investigators

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

Follow Nick:

Down syndrome with a slice of autism on Facebook and Pinterest

#nickdsautism on Instagram

@tjunnerstall on Twitter

 

 

 

 

 

Posted in Down syndrome, Down Syndrome Awareness

Blog #181~Iceland and Down syndrome

Blog #181~Iceland and Down syndrome

Last week CBS News ran a story about Down syndrome in Iceland. The CBS report opens like this:
“With the rise of prenatal screening tests across Europe and the United States, the number of babies born with Down syndrome has significantly decreased, but few countries have come as close to eradicating Down syndrome births as Iceland.”

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“On 14 August 2017, CBS News ran a segment for their program “CBSN: On Assignment” in which correspondent Elaine Quijano traveled to Iceland to report on that country’s disappearing incidence of Down syndrome. Since prenatal screening tests were introduced in Iceland in the early 2000s, the vast majority of women — close to 100 percent — who received a positive test for Down syndrome terminated their pregnancy.”

To view the story click here:
https://www.cbsnews.com/news/down-syndrome-iceland/

I’m going to throw my two cents in about this news story. This week’s blog is not a debate about a moral decision of whether to choose to have a baby with Down syndrome. It’s not my place to comment if someone decides to terminate a pregnancy for whatever reason.  I can only speak from own experience of having a child with Down syndrome. My son Nick is 23 years old and has Down syndrome and autism.

There are 3 comments that I would like to make regarding this news story:

*1. Expectant parents should first do their research first and get the facts. Doctors often know little about Down syndrome beyond their own medical experience. The delivery of news about the possibility of a baby having Down syndrome is often delivered grimly and with pity. This was the case in my son. I would like to see the medical community and society to become more educated on Down syndrome. When you know the facts, you can make an informed decision that is not based on fear.

Here are a few good places to get the facts about Down syndrome:
http://www.ndss.org/Down-Syndrome/Down-Syndrome-Facts/
http://www.ndsccenter.org/new-and-expectant-parents/
*2. Down syndrome in and of itself, is nothing to fear. Yes, there are health issues associated with Down syndrome. Click here to view: http://www.ndss.org/Resources/Health-Care/Associated-Conditions/

A baby with Down syndrome may take a little longer to reach developmental milestones. But, with early intervention with physical, occupational and speech therapy can guide a baby/child with Down syndrome to hit those marks.  Sometimes, we fear what we don’t know or understand.  When you get educated about the facts, it will help to reduce the fear.

*3. Society needs to see more of what Down syndrome looks like. Persons with Down syndrome are people first! “The Emmy winning A&E show, Born this Way follows a group of seven young adults born with Down syndrome as they pursue their passions and lifelong dreams, explore friendships, romantic relationships and work, all while defying society’s expectations.”  I wish the whole world could have access to this great show! Click here for more information: http://www.aetv.com/shows/born-this-way

btway

Another excellent site I highly recommend is Noah’s Dad!  I’ve had the extreme pleasure of following Noah’s Dad and his journey with his son, who in entering first grade this year. He gives us a view of how full, and rich their lives are having Noah in it. You can find Noah’s Dad-Down Syndrome Awareness on Facebook and at http://noahsdad.com/

You can also follow my son, Nick on Facebook and Pinterest @Down Syndrome With A Slice of Autism, Instagram @nickdsautism and Twitter #tjunnerstall

Nick scuba diving in the Diveheart program……

Diveheart 2013 336

Down syndrome is nothing to be feared once you know the facts, and see what the lives of these wonderful individuals are like. It has been a true privilege being Nick’s mom. He has taught me more about life, and made me a much better person in the process. I couldn’t imagine a world without people like Nick and others, who have Down syndrome.  I’m 100% sure that anyone who has been touched by Nick, would say the same.

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That’s what is in my noggin this week. 🙂
~Teresa

Posted in Autism, Down syndrome, Education and Special Needs, IEP (Indivdualized Education Plan), Parenting Special Needs

Special Needs Back to School Tips

Special Needs Back to School Tips

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Kleenex, glue sticks, crayons, and more, are all jotted down on the shopping list.  It’s that time of year to get ready to go back to school.  But what should you be doing as a parent of a child with special needs?  I’ve got 5 great tips to get you started on the right track!

5 Back to School Tips for Special Needs Parents:

Click here to view these 5 tips- https://nickspecialneeds.com/2016/08/22/blog-153special-needs-back-to-school-tips/

Make it a great school year, 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

 

Posted in Autism, Behavior/ ABA, Dual Diagnosis Down syndrome and autism, Parenting Special Needs

Blog #180~Special Needs Moms,Let Go of the Guilt

Blog #180~Special Needs Moms, Let Go of the Guilt

No Guilt

Am I doing enough for my child?  Should I switch to a gluten-free diet?  Does my child need ABA (Applied Behavioral Analysis) therapy?  Maybe I should be diffusing essential oils?  These and many other questions swirl constantly, in the mind of a parent having a special needs child.  I should know after 23 years of raising my son, Nick.  He has a dual diagnosis of Down syndrome and autism.  Over the years, I’ve allowed doubt to creep in.  You see other moms talking about intense ABA therapy, up to 20 hours a week.  You hear testimonials of how a gluten-free diet helped to increase speech and decrease problematic behaviors.  Then, there are the success stories and pictures plastered over social media groups.  Compelling accounts of children excelling in Special Olympics, summer camps, recreational programs and the latest programs sure to launch your child new heights.  There is a tremendous amount of pressure to do it all.  So, you begin to question yourself as a parent.  Am I doing everything I can to help my child with special needs?  This is when the guilt begins to seep in.  That’s, when you need to let go of the guilt.

Parenting is a balance act.  The responsibilities of running a household, taking care of children and their activities along with your own personal job and welfare, can be enormous.  At several points over the last 23 years, I’ve hit walls where the pressure is just too much.

At those junctures, it’s important to stop, take a breath, and re-evaluate what works for your child with special needs, and the entire family……

*RE-EVALUATE- Which treatments, therapies, and recreational programs are useful? Where are you seeing growth and enjoyment for your child?  Weigh the benefits against the disadvantages of each program, treatment, and therapies that you are considering.

*PRIORITIZE- What activities are essential for my child and any siblings?  Which of these activities are needs/must haves (like swimming lessons), and which are wants (like a recreational soccer program)?

*STRIP BACK- After you’ve re-evaluated and prioritized, create a new schedule that suits your family.  Listen to the cues of your child, (and yourself).  Is it stressful, time-consuming, expensive or sapping your energy?  Has it become a huge inconvenience and unfair to the rest of your family?

Right now is a perfect time, before school starts, to take a deep look at all the therapies and activities your child and siblings are involved in.  Are these programs enhancing their growth?  How much time are you spending in the car, commuting all over town for these therapies and other programs? Sometimes, it’s just TOO MUCH for you child and other family members.  Consider scaling back, and opt to incorporate learning activities at home. Ask your child’s therapists for suggestions on how to do this.  With their help, create learning (TEACCH) activities that can be done at home.  It really helped me to achieve better balance, when I scaled back, and incorporated a few of the TEACCH activities along with natural occurring jobs around the house, instead of driving all over town each day to therapies.  🙂

TEACCH (Treatment and Education of Autistic and Communication is an evidence-based service, training, and research program for individuals of all ages and skill levels with autism spectrum disorders.  

Here are some TEACCH bins we do in our home with Nick…..

Task Strip with a highly preferred reward to work towards. Nick picks out a reward  from his PECs (Picture Exchange Communication book) or AAC (Augmentative and Alternative Communication Device).  He usually chooses a Sprite….

Task Two Strip

Nick get’s handed the #1 and matches to the bin and completes the activity.  Once this is done he puts the #1 on the green task strip.  This is repeated for all four bins. The activities range from sorting, matching, assembly, folding, and fine motor.  Bins can be customized to fit the needs of an individual child.  These are just a few of many Nick does.  Be sure to mix in some that have a high success rate, with more challenging activities suitable for your child:

bins 1 and 2   Bins 3 and 4

Naturally occurring activities can also be added around the house throughout the day.  Examples include unloading the dishwasher, garbage/recycling, laundry, putting groceries away, cleaning counters, vacuuming, and gardening.

Nick watering plants

All these activities help to build new skill sets, confidence and independence.  The TEACCH activities are also implemented by respite caregivers, which we’ve hired with the help of state waiver funding.  These caregivers work on goals both in the home and out in the community. Respite workers can also help take your child to afterschool activities such as therapy, Special Olympics/ sports or swim lessons and social groups. Having respite care or hiring a babysitter, allows a parent to get a break and take time to get out and enjoy their own life.

It’s so easy to get bombarded with advice on treatments, diets, therapies and recreational programs related to special needs.  As a parent, you need to decide what is useful and stop feeling guilty about doing everything single therapy and program to help your child.  Do your research, weigh the pro’s and cons, and decide what works best for your child and family. Consider incorporating TEACCH activities at home, instead of running and around, and spending more time in multiple therapy clinics.  Don’t allow those guilty thoughts to rob your peace, or make you doubt your parenting skills.

relax boardwalk

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