Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, Resources for Special Needs

Blog #192~Down syndrome-Autism: Green Monday Gift Ideas

Blog #192~Down syndrome-Autism:Green Monday Gift Ideas

green-monday

It’s green Monday and just two weeks until Christmas.  Here are some gift ideas for individuals having Down syndrome (or a dual diagnosis of Down syndrome and autism, or other special needs) along with their caregivers, teachers/aids, and therapists.

http://papercloudsapparel.com/  Order T-shirts, hats and totes designed by artists with special needs

My son Nick, wearing a Paper Clouds Apparel shirt designed by Justin Lundeen…

nick fire truck shirt

https://www.riverbendgalleries.com/  Features the beautiful photography of artist, Geoffrey Mikol prints, framed art, calendars, coaster sets and greeting cards are available for purchase online….

Geoffrey Mikol picture    Geoffrey Mikol

http://specialsparkle.com Kelly is a young entrepreneur who has Down syndrome.  She designs and makes fashionable jewelry you can order online….

special sparkle jewelry

http://www.christianroyalpottery.com/pages/about  Beautiful pottery (bowls, platters, plates, jewelry) by Christian Royal…..

 

 

One of the best gifts is an iPad and there are countless apps for learning and play.  If you are looking for a sturdy case, the Go Talk Rugged and Big Grip cases have held up the best…..  

 

If your child has sensory needs, and likes to do a lot of dropping, check out these toys:

vortx-dropping-coins  marble racemagic-tracks-mega-set-360-piece--A817AA38.zoom

Gifts ideas in located in the archives, type this in the search box: Blog #131~Christmas Ideas for a Child With Special Needs…..

 

Gift ideas for babies and toddlers with Down syndrome: http://www.cedarsstory.com/?s=Best+Gift+Ideas

Noah’s Dad- Down syndrome Awareness Top 10 gifts for a 7 year old: http://noahsdad.com/7-year-old-gift-ideas/

Books for caregivers and families, here are a few suggestions and there are more listed in this Blog #144~ Inspiring Books Related to Down syndrome located in the archives……

 

Gifts book cover    Book An Uncomplicated Life  down syndrome and autism intersect

Please feel free to share this, and any of my blogs with others and on social media.  Also, check out my Pinterest page for more gift recommendations and other helpful information. Do you have any gift suggestions? I’m always looking for unique gift ideas related to Down syndrome and autism to post on my website.  Nick and I wish you all the best as you are preparing to enjoy the holiday season.

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 Adult Day Programs for Special Needs, Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, Recreation/Leisure and Special Needs

Fall Update: Nick DS-ASD

Fall Update: Nick DS-ASD

Time flies when you are having fun, and Nick is having a blast this fall.  My son, Nick is 23 years old and has a dual diagnosis of Down syndrome and autism.  He attends an adult day program which provides a wide variety of activities.  Community outings this fall included volunteer jobs, bowling, visits to local parks, fire station, grocery shopping and going out to eat.  His group also works in-house doing gardening, cooking, skill along with communication building using their Augmentative Alternative Communication (AAC) devices.  Nick uses a program called Touch Chat on an iPad for communication.

Nick cooking at his day program…..

Nick cooking meatballs

Nick was very excited to visit the fire station 🙂  He wasted no time buckling up right away….

Nick fire truck

Outside his adult day program, Nick enjoys community visits to the library, mall, parks, shopping, the movies and eating out.  He continues to have “date nights” meeting up with his buddy, Christopher.  We are very grateful to have such caring respite workers, to take him out several times each week.

Fun at the Halloween Store…..

Nick crown

Buddy Up Tennis, see Blog #190 to read all about it @https://nickspecialneeds.com/?s=buddy+up

Nick buddy tennis 2

Nick relaxing at the library.  Make yourself at home there, Big Guy….. 🙂

Nick library

That’s Nick’s world and update for this fall.  I would like to take a moment to thank our respite workers, Lara, Jodi and Kelsey for all they do for Nick and our family.  My son has a full and rich life, and we are grateful to have these supports in place to make this possible.

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

~Teresa 🙂

Want to see more pictures of Nick?  We have a lot more on social media:

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

Blog #191~Challenging Behaviors: Why is My Child Acting This Way?

Blog #191~Challenging Behaviors: Why is My Child Acting This Way?

behavior

Parents raising a child with a dual diagnosis of Down syndrome and autism experience challenging behaviors from their children.  A long holiday weekend can heighten these behaviors with changes in routine and family gatherings.  A child may feel lost in the mix and in need of attention.  They may also experience sensory overload.  These can be shown in a variety of ways, such as increased self-stimulatory/ repetitive behaviors (hand flapping, tapping, turning on water faucets, pushing buttons, shutting or slamming doors),  self-injury (head banging, biting, slapping self), attacking others and property destruction to name a few.  This week I want to focus on WHY a child may be acting out.  When you understand why this might be happening, you can put a better plan in place, in order to support your child.

The first step is to determine what the behavior means.  All behavior is communicating something.  This is where you have to do some detective work.

Detective-clipart-animation-free-images-2

Keeping a log of behaviors is a great tool to determine what purpose this is serving your child.  It’s helpful to use a Functional Behavior Assessment Form, such as this to gather data:

Functional Behavior Assessment

Data collection will assist you at home and the school IEP team on the who, what, where, when and why’s of the behavior.  What is this behavior trying to communicate?  What need is being expressed through these behaviors?  Is there a pattern of when these behaviors are occurring and what is triggering them?

Ultimately the Functional Behavior Assessment, (also known as a FBA) will reveal what the purpose this behavior serves for the child.  

Let’s put this to use with two behaviors often associated with a dual diagnosis of Down syndrome and autism:

*Self-stimulatory or Repetitive Behaviors

*Injurious Behaviors

In the case of self-stimulatory or repetitive behaviors, a child may:

  1. Need more stimulation
  2. Be trying to masking sensory overload
  3. Be upset, anxious or not busy enough

Observe your child, and maybe even try the behavior yourself in order to get an idea of why they are attracted to it.  Repetitive behaviors are often sensory based.  They help to calm and organize the nervous system by releasing stress chemicals.  This in turn can help to reduce anxiety.

My son, Nick is 23 years old and has a dual diagnosis of Down syndrome and autism.  He often uses tappers to help regulate his sensory needs.  Here he is at his adult day program:

Nick tappers AID

Bottom line, it’s important to respect these sensory needs and allow your child to have this time during the day.  Find a balance in building in these sensory breaks without letting them take over completely.  Self-stimulatory and repetitive behaviors should not  get in the way of learning, or in work jobs.  Keep in mind, especially around the holidays as you get busy with wrapping presents, cooking and cleaning the house that your child may be bored and feeling ignored.  It is necessary to provide some structured activities to reduce these behaviors.  I like to give my son jobs so he feels helpful, and rewarded for his appropriate behavior with lots of praise.  While I was getting the house ready for Thanksgiving, I had Nick vacuum for me, a job he enjoys doing.  It provides him with good sensory input using heavy work, which can be calming…

Nick vacumme thanksgiving

In the case of injurious behaviors a child may:

  1. Bang head, bite, slap themselves, attack others or destroy property
  2. Be frustrated, angry, experiencing discomfort, pain or sensory overload
  3. Communicate escaping and avoiding an unwanted task or event

Again, the Functional Behavior Assessment chart can help to determine if there is a certain activity, event or time of day which causes these behaviors to escalate.  As the detective, you want to uncover these triggers.  When you figure out these triggers, you can put supports in place to in essence, cut it off at the pass before your child goes into a full-blown meltdown.

Example- Family trip to the shopping mall:

The stimulus overload, especially around the holidays with added crowds,  more kiosks, noises, lights, and may be too much for a child with autism.  You many need to keep the trip short and provide visuals supports to help your child understand the sequence of events that will happen.

Task Strip for shopping mall trip….

task strip mall

Along with a visual schedule, you want to keep your eye open to any distress signals the child may exhibit in their body language.  My son will tend to pinch his cheeks when he is upset or stomp and say, “I’m mad”.  These signs are a cue to back off and lower the demands you are placing on your child.

In summation, you can support your child and prevent these injurious behaviors by:

  1. Recognizing distress signals and re-direct your child.
  2. Lowering or pulling away the demands that have been placed and causing your child to feel overwhelmed.
  3. Providing visual supports with task strips so they know the sequence of events.
  4. Teaching alternative ways to escape and unwanted situation by using visual supports with icons such as, “Stop” “Help” “All Done” and “I Need A Break”:Break Icon
  5. Practice teaching appropriate ways to protest separately in mild stress situations. Use the icons above either with visuals or on a communication device using lots of praise.

Understanding the function of your child’s behavior and creating an environment to support them will lead to success in both home, school and in the community.  If your child has challenging behaviors, seek the help of a trained autism behavior specialist.  You should request that a Functional Behavior Analysis (FBA) be done.  Once this data is collected, a Behavior Support Plan (also known as a BSP) can be created and put in the IEP.   You and the school IEP team can brainstorm on what supports to put in place to help your child better succeed and express themselves more appropriately.

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 @tjunnnerstall

 

 

 

 

 

Posted in Down syndrome, Dual Diagnosis Down syndrome and autism, Recreation/Leisure and Special Needs

Blog #190~Nick & Buddy Up Tennis

Blog #190~ Nick & Buddy Up Tennis

I took my son Nick, to the Buddy Up Tennis program over the weekend.  Buddy Up Tennis is a high-energy, adaptive tennis and fitness program for children and young adults with Down syndrome.  They provide fun and rewarding 90-minute clinics on a weekly basis.  The program currently serves 550 individuals ages five to young adults with Down syndrome across the country.  Honestly, I wasn’t sure how cooperative Nick would be given that he has a dual diagnosis of Down syndrome and autism.  I am happy to report that he participated and followed directions fairly well, for his first time out.

Nick buddy tennis 2

This 90 minute Buddy Up Tennis-Naperville clinic, is held at Five Star Tennis Center.  Athletes are paired with a buddy and start off with a warm up.  Each participant gets to toss the dice and perform a variety of calisthenic exercises like toe touches, push-ups, jumping jacks and sit ups.  Nick needed some prompting on these.  I had to laugh when everyone got down to do push ups and Nick was still standing.  Then about the time he got down on all fours, the rest of the group was up doing jumping jacks. 🙂

fitness dice                Buddy Up Tennis Logo

After the warm-up, the participants break up into groups.  The younger kids use modified equipment and balls on a separate court.  The teens and young adults move to circuit training.  Stations are set up focus on balance, agility, hand-eye coordination and upper body movements that mimic tennis strokes and serves.

Nick navigated each station with prompts, praise and elbow bumps, from his buddies and coaches.  He moved at a slower pace than his peers, and there were a few stations he was less interested in.  But overall, did a good job!

Nick Buddy Tennis balance

After circuit training, the athletes worked on volleys and ground strokes.  Nick needed more prompting and hand over hand assistance, to move through these drills.  But he remained patient and compliant.  It really helped to have a peer partner and the coaches cheering him on, as well as the other athletes modeling appropriate behavior.

Nick buddy tennis

Towards the end of the clinic, Nick did begin to lose interest in hitting tennis balls.  I grabbed a ball hopper, and he and his peer buddy collected balls.  Nick is good at putting things away, so this kept him perked him up and engaged.  For the last 10 minutes, all the groups come together, and play a few rounds of duck, duck, goose. Then, the coaches present certificates to the top awesome athletes for that week.  Nick was awarded one of these for working hard.  Yay Big Guy! 🙂

Overall, I feel the experience was a success for Nick.  I was a little nervous going in, because he can be loud and distracting with the stimming behaviors associated with autism.  However, these behaviors were quite diminished during the clinic.  It reminded me of when Nick was in a full inclusion classroom, when we first moved into the Chicago area, 15 years ago.  Positive peer role models is one of the benefits of placing your child in full inclusion classroom.  When Nick was in a full inclusion classroom, the loud noises, tapping and other stimming decreased.  That alone, makes it worthwhile to enroll him in the next session coming up in January.

I plan on making a few visuals of the calisthenic exercises, circuit stations and sequence of moving through the drills will help with transitioning.  For individuals with autism, it helps to have a picture schedule to assist them in understanding what is expected of them.  If they can see it, they can better understand it.

Buddy Up Tennis is a wonderful program, and I’d like to thank the coaches and volunteers for the opportunity to have Nick be a part of group.  For more information about Buddy Up Tennis, visit their website at http://buddyuptennis.com/

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

~Teresa

Follow Nick:

Facebook & Pinterest @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

 

 

 

 

 

Posted in Down syndrome, Down Syndrome Awareness, Dual Diagnosis Down syndrome and autism, Education and Special Needs

Blog #186~Down syndrome:How to Promote Inclusiveness in School

Blog #186~Down syndrome: How to Promote Inclusiveness in School

DSAwarenessMagnet     Peer Partners

October is Down syndrome Awareness Month.  This is an ideal time to promote inclusiveness in your child’s school.  Forming a partnership with your child’s education team is the key to a successful inclusion experience.

Here are a few resources and suggestions on how to advocate for inclusion in your child’s school environment and classroom:

*Send an “All About Me” introduction about your child to the teacher.  There are many ideas, templates and apps that are available online.  This is especially helpful, if your child’s speech is limited or non-verbal.

all about me app

*Share inclusion resources with your child’s teacher:

  • Meaningful Inclusion for Students With Down Syndrome: A Resource for Elementary Educators. http://www.mdsc.org/infojustforyou/EdManual.cfm
  • The Inclusive Class: http://www.theinclusiveclass.com/
  • Inclusion in the Classroom-Tips and Resources: http://allbornin.org/wp-content/uploads/2012/11/Inclusion_Classroom_Tips.pdf
  • Donate books to the library and classroom:               I can Can you  Paint the Octopus Red  My Friend has DS

*Topics on Down Syndrome, that are helpful for teaching from Woodbine House Publishing: http://www.woodbinehouse.com/  Books related to Down syndrome are ON SALE during the month of October!

Whole Child Reading         Down syndrome and autism intersect2      Teaching Math to DS        fine motor skills and DS

Working with the school team to promote an understanding about Down syndrome, and a dual diagnosis of Down syndrome and autism has many benefits.  It will help students in general education classes feel less anxious and reduce misconceptions they may have had.  Building this bridge together, will lead to a meaningful learning experience for everyone in the school.  That’s what is in my noggin this week.

~Teresa 🙂

Follow Nick:

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Instgram@ #nickdsautism

Twitter @tjunnerstall

 

 

 

 

 

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

Blog #185~ Down Syndrome: Supporting Positive Behavior

Blog #185~Down Syndrome: Supporting Positive Behavior

This month’s blog posts have focused on behavior management, specifically to individuals who have Down syndrome and autism.  I recently read, Supporting Positive Behavior in Children and Teens with Down Syndrome.  This book by pediatric psychologist, David S. Stein gives a comprehensive breakdown of how to deal with challenging behaviors, with a specific look at how the brain of a person with Down syndrome works.

Book Supporting Positive Behavior DS

This book is a must read for anyone who cares for, or works with, a child or teen with Down syndrome.  I only wish that this book had been available when 23-year-old son, Nick, was younger.  One of the key messages from this book, is how to look at behavior.  If you view a bad behavior as willful or intentional, the immediate reaction is to punish.  However, it is important to consider that the behavior is communicating some need.  The first section of this book, dives into the brain of a child with Down syndrome and cover behavior basics “101”.

In chapter 5, there is a step by step guide to behavior management system designed for children with Down syndrome:

Step 1:  Maintain the relationship (keep it positive)

Step 2:  Structure the environment for success

Step 3:  Use visuals, visuals, visuals

Step 4:  Notice good behaviors and set up token economies

Step 5:  Use proactive strategies to prevent negative behaviors and support positive behaviors

Step 6:  Manage the difficult situation before they happen 

The underlying theme in this book is how you approach behaviors.  Acknowledge that the behavior is NOT a willful or intentional act designed to make you upset.  Instead, view the behavior as an expression of some unmet need or challenge that has not been addressed.

“You can respond to a behavior thoughtfully, rather than emotionally.  You can learn to respond…but don’t react.”

Throughout the book, this is the common thread.  Respond… but don’t react.  Take your emotions out of the equation, and sometimes your gut reaction as well.  There are several chapters that address positive behavior management at home, school, community and with siblings.

When disciplining or responding to behavior, here’s what you should and should not do:

 You should:

*Take away eye contact.

*Keep your facial expressions neutral.

*Speak very little, if at all.

*Keep your tone of voice neutral.

*Keep your emotions in control.

*If removing attention and emotions is not enough, then direct the child to “take a break”.

And you should not:

*Look right at the child

*Make angry or upset faces.

*Try to explain, using words, why or what they did was horrible.

*Speak in a harsh, animated way.

*Show strong emotions.

Whenever possible, look for ways to prevent the behavior in the first place.  Try to determine what is causing the behavior, and what this functions serves the child.

There are often times which may be more difficult and cause more behavior problems.  These often occur in transition times, and especially during puberty.  These are addressed specifically in this book, along with when and how to seek help from a certified behavior specialist.

This book, Supporting Positive Behavior in Children and Teens with Down syndrome, is a concise guide to understanding behavior and how to manage it thoughtfully, by responding and not reacting to meet a child’s needs.  David S. Stein, packed a lot of punch into 132 pages.  I highly recommend adding this book to the cart.  That’s what is in my noggin this week.

~Teresa 🙂

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Posted in Autism Spectrum Disorder (ASD), Behavior/ ABA, Down syndrome, Dual Diagnosis Down syndrome and autism

Blog #184~ Addressing Problem Behaviors in Individuals with DS/ASD

Blog #184~Addressing Problem Behaviors in Individuals with DS/ASD

Problem behaviors in individuals with Down syndrome and autism (DS/ASD), are very common.  Speech deficits, make it difficult to communicate wants and needs.  Often individuals with DS/ASD, may exhibit problem behaviors to communicate something.  Last week I participated in a webinar about addressing such behaviors, led by Sam Towers (http://sam@towersbehavior.com), that was hosted by The Down Syndrome Association of Minnesota.  Here is a summary of this webinar on addressing problem behaviors in individuals with DS/ASD.

First of all, it is important to build rapport.   Establish a friendship with kindness, and positive activities that the individual enjoys.  This will provide the basis for teaching the person, that there are other ways, besides problem behavior, for achieving goals.  Sam suggested a 10:1 ratio of praising good behaviors.  Praise encourages the individual to do it again.

Why do people use problem behaviors?

1.Get attention

2.Get something

3.Escape or avoid something unpleasant

4.Get a pleasant sensation

All behaviors allow a person to achieve a goal, because the payoff is reinforcement.  You get what you pay more attention to.  The idea is to avoid letting problem behaviors have a payoff.  So, focus ALOT more on addressing the good behaviors.  This can be done by building skills, through teaching replacement behaviors.  If a child is throwing things to get attention, the replacement behavior could be to teach them to tap you on the shoulder or use their communication device.

My son Nick is 23 years old and has a dual diagnosis of DS/ASD.  He has many behaviors that are used to get attention or something, and provide a pleasant sensation.  Part of the autism piece is sensory related.  Flushing the toilet repeatedly, pushing the microwave fan or phone intercom buttons are ways that he stims, which is a form of self-entertainment.  One suggestion, for this would be to teach other ways for him to entertain himself.  Some supports that I recommend, are to use social stories, redirect to an AAC (Aumentative Alternative Communication) device, PECS (Picture Exchange Communication) book, or create a choice board.

Choice Boards:

choice boards

If an individual is trying to get out of an activity, they may exhibit behaviors like self-injury, yelling, or stop-drop and plop.  In these cases, it’s important to provide supports like, a first-then charts, “take a break” card, noise cancelling headphones, a visual schedule, or a timed timer.

timer app    first then  1,2,3,4 Sprite

Bottom line, you can’t let the problem behavior become the payoff.  The single most effective way to get rid of a problem behavior, is to arrange things so that there is no payoff (reinforcement) for the behavior. Completely withholding reinforcement can be difficult, and often leads to an increase in the behavior.  This is called an extinction boost.  But if you stick to your guns, this will result in the behavior decreasing.  The key is to be consistent in not rewarding the undesirable behavior.  If it is reinforced intermittently, it will cause the behavior to be more long-lasting, because there is still some payoff for the individual.

Understanding the reasons people use problem behaviors, building skills and supports to teach replacement behaviors, praising 10:1 good behaviors, and arranging things so that there is no payoff for the problem behavior are all great tools for addressing problem behaviors in individuals with DS/ASD.  Here are a few resources which may also help:

Edward Carr Book    Social Story Book  visual strategies book

When Down Syndrome and Autism Intersect,
edited by Margaret Froehlke and Robin Zaborek:  

down syndrome and autism intersect

A special thank you to the Down Syndrome Association of Minnesota and Sam Towers of Towers Behavior Services for an informative webinar.  Now, it’s time to make a new choice board for Nick.  Have a great week, everyone.

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 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

Hurricane+Harvey+1280x720

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

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

ou 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.  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

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