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

Blog #208~Vacation Tips for Parents of a Child With Special Needs

Blog #208~Vacation Tips for Parents of a Child With Special Needs

summer sand

Are you a parent of a child with special needs, that will be going on vacation soon?  If so, then this blog is for you.  It can be a lot of work ahead of time getting ready for a trip.  But it is well worth it to be prepared and have a plan in place to help your child feel more relaxed and secure.

Here are 7 Vacation Tips for Parents of a Child with Special Needs:

1. Prepare social stories and visual schedules including the mode of travel, and what is expected from your child.  Review the vacation destination venue online with your child.  This will give them an idea of where they will be going, and what they will be doing.  Print pictures of the vacation venue to create a daily activity schedule.  Visuals will provide a blueprint for your child to understand what will be happening, this will lessen their anxiety.

flying visuals

2. When booking accommodations, look for a comfortable and quiet retreat for your family.  This may mean a separate living area from the rest of your family or friends in some cases.

3. Bring medications, snacks, comfort items and highly preferred toys/sensory objects in your carry on bag.  In addition, it’s wise to pack an extra set of clothes for your child.

4. Plan short, flexible and open-ended adventures on your vacation.  Build in time for breaks as needed.

5. Work in at least a few activities that your child will love.

6. Eating familiar foods will help your child feel more at home in a strange place.  Check resturaunt menus online beforehand, especially in the case of any food allergies or dietary restrictions.  Don’t underestimate the importance of this.  Once on vacation, we forgot to buy Ranch dressing, this lead to my son having a meltdown.

7. Don’t beat yourself up if things don’t go as planned.  As much as you can, try to watch for the triggers that may cause your child to have a meltdown.  See what you can do to cut these off at the pass before things escalate.

My son Nick is 24 years old and has a dual diagnosis of Down syndrome and autism.  There are definite triggers that can lead to him having a meltdown.  Besides the Ranch dressing incident, we’ve experienced several instances where heat has caused him to lose his cool.  On two different family reunions, Nick got upset waiting in the heat for the family group pictures to be taken.  Another occasion was a city tour on a 90+ degree day. We pushed the envelope too far, trying to walk back to the car, which was a good 10 blocks away.  Nick wanted no part of it.  He got very upset and it quickly escalated to a meltdown.  In retrospect, I should have asked a family member to get the car to us.

Hot Spring, AR was extra hot that day.  Nobody is happy here…….

004

When meltdowns happen, get your child to a safe spot and allow them to recover fully.  Reassure your child that he is loved and safe.  Most important as a parent, remain calm in these situations.  Afterwards review with your family what the antecedents were, that led to the behavior.  Learn from these, so you can avoid and control them in the future.

Vacations while fun, can be challenging for a child with special needs.  Prepare in advance with comfort items, visuals, and look for possible triggers that may cause anxiety and discomfort for your child.  Build in as much predictability as possible.  Keep a relaxed and flexible attitude when approaching daily activities.  It’s okay to cut things short, if it gets to be too much.  Have a great summer, and don’t forget to pack the sunscreen!  I’ll be sure to pick up some Ranch dressing too.

sunshine

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, Down syndrome, Dual Diagnosis Down syndrome and autism, Parenting Special Needs

Blog #207~Special Needs Parents: Coping When Life Gets Tough

 a Blog #207~Special Needs Parents: Coping When Life Gets Tough

Let’s face it, being a parent is exhausting at times.  When you have a child with special needs, it’s amplified.  Sometimes you just can’t catch a break.  You have to walk on eggshells, and keep your cool, so your child doesn’t have a meltdown.  The physical needs your child may have can take its toll, zapping your energy levels each day and night.  Autism and sleep disorders go hand in hand. Endless nights of interrupted sleep will beat you down.  My son Nick is 24 years old, and has Down syndrome and autism.  I’ve got many years under my belt, of taking care of his needs.  I can hold it together pretty well and keep my patience in tact.  Believe me, Nick does try my patience daily.  But every once in a while it gets to be too much, especially when sleep is disrupted.

mombie

So how do you find ways to catch a break and re-charge?  I thought a lot about this over the weekend.  There are times in life where you start to get your footing, but the next thing you know, a few more hurdles block your path.  In the worst of times, when my son was going through puberty and having multitudes of meltdowns, I questioned how I was going to survive.

I repeated this mantra to myself……

winston churhill quote

Here are 7 things to keep in mind which will help when you feel stressed out…..

  1. It’s totally NORMAL to feel overwhelmed.
  2. When you do feel stressed out, seek BALANCE and prioritize what MUST be done and what can wait.
  3. Stop feeling GUILTY.
  4. Give yourself a BREAK, even if it’s a mini break to keep you at your best both emotionally and physically.
  5. Ask for HELP from family, sitters and respite caregivers. You can’t do it alone.  Delegate household chores to all family members.
  6. CONNECT with support groups who better understand what you are dealing with on a daily basis.  Being a parent of a child with special needs can be lonely.  But you know what, you are NOT ALONE.
  7. Keep GRATITUDE in your heart.  Every day look for the blessings.  The good stuff will keep your focus positive.

This weekend was very busy, and my usual Saturday catch up routine was interrupted.  That evening I was looking for a clean pair of underwear for my son.  I dug through 3 clean laundry baskets that had yet to be put away.  Not one single pair could be found.  It was late, I was tired, and it was all too much.  While Nick was in the shower, I went into the closet and started yelling, “T, you suck.”  And yes, the swear words were flying.  Nick ended up in a pair of his Dad’s boxer briefs that were on the baggy side.  I spoke into the Amazon Echo, “Alexa, put F-ing underwear on the shopping list!”  Alexa acknowledged the request, without using the expletive, as she is polite that way.

The next day, Nick went to brunch with Kelsey, his respite caregiver.  I took my own advice, and put myself first.  I also took a moment to be grateful that Nick was fully toilet trained (no easy feat), and able to wear underwear.  Before making a Wal-Mart run for groceries and F-ing underwear, I headed over to my happy place, DSW Shoes. I was loaded down with preferred customer coupons and a gift card that I got for Mother’s Day.  It was only a twenty-minute mini break, but it did me a world of good!  Oh and I came out treating myself with two new pair of cute sandals. 🙂

Being a parent of a child with special needs carries a unique set of responsibilities that can be overwhelming.  Know that you are not alone, and that it’s essential to give yourself a break without guilt.  Even in the darkest days and nights, things will get better.

So I leave you with this final mantra when you are taking on what seems to be the impossible…..

breathe chapter quote

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

~Teresa

Follow Nick:

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Instagram @nickdsautism

Twitter @tjunnerstall

 

 

 

Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, Parenting Special Needs, Uncategorized

Blog #206~ Stop Procrastinating

Blog #206~ Stop Procrastinating

no-procrastination

“Procrastination is the thief of time.”  It’s not always about being lazy, sometimes it is rooted in other causes.  So why do we procrastinate?

procrastination-powerpoint-14-638

Being a parent of a child with special needs, brings additional pressure.  There are many responsibilities of being their caretaker, that are lifelong.  My son Nick is 24 years old and has a dual diagnosis of Down syndrome and autism.  Taking care of my son is a never ending job.  Yes, sometimes I have check out and binge watch shows on HGTV and Bravo.  We all need some time to escape, but not at the expense of shrugging our responsibilies.  Perhaps, I’m writing this piece to remind myself to be more disciplined.   So, how do you kick the procrastination habit?

Here are 5 Tricks to Kick the Procrastination Habit:

1. Set Goals

Define what needs to get done and hold yourself accountable.  Re-assess your goals on occasion to make sure your priorities are where they need to be at this point in your life.  Commit to your goals!

#goals

2. Define Mini-Tasks

Breakdown your goals into smaller, more manageable tasks.  Ask yourself what steps need to happen to reach your goals.  For example, say you want to create and organize an IEP binder for your child.  An IEP (Individualized Education Plan) binder can help you prepare for IEP meetings and better collaborate with teachers and other IEP team members.  Break down creating this binder with tabs for each section (communication, evaluations, copy of IEP, report cards/progress notes, sample work, and behavior).  Breaking this project down into mini-tasks will be less overwhelming and easier to handle in stages.

iep-binder-1740x979

Click here get started on your IEP binder:  https://www.understood.org/en/school-learning/special-services/ieps/how-to-organize-your-childs-iep-binder

3. Make Lists

I use to make fun of all the lists my Mom had going around our house, growing up.  But you know what, Mom was right, they do keep you organized and focused.  To do lists help track your goals.  There is a real satisfaction to checking off items after you’ve completed the tasks.  It rebuilds faith in your own abilities when you complete action items on a given deadline.

checklist

4. Eliminate Distractions

Cell phone alerts, social media, TV and a cluttered work space will distract you from working.  Free yourself of these, so you stay focused on your tasks.  Clutter is the enemy that is both dibilitating and anxeity ridden.  This weekend I cleaned out and purged my bathroom drawers and cabinets.  Why?  Well, A=It was raining and B=I couldn’t find one bobby pin.  The end result, I threw away a big bag of stuff I wasn’t even using.  I won’t be rummaging around the clutter, and wasting valuable time in the mornings.  Oh, and I found a lot of bobby pins 🙂

5. Carve Out Time That Works For YOU

You know yourself, and when your energy level and focus is most productive.  I say this all the time to my fitness class participants.  I’m NOT a morning person, so I do everything I can the night before that I can to prepare for the following day.  This includes laying clothes for myself and my son, jotting notes in his communication journal, and planning my fitness class agenda for work.

Nick’s grooming bin…..

photo (118)

It’s also important when you have a child with special needs, to get things done when it is quiet so you can concentrate.  I never try to write or edit when my son is home.  Instead, I take advantage of the time when he is at his adult day program to do the tasks that require a lot of focus.  Also, be sure and carve out free time for extra curricular activities. Find the balance of both a schedule and unscheduling.

writing-schedule

Breaking the habit of procrastination can be done by setting goals, breaking those down into mini-tasks, making lists, eliminating distractions and carving out time that works for you.  Building in flexibility, forgiving yourself, and rewarding your accomplishments are positive ways to keep up your momentum.  Stop procrastinating and make good on your promises.  Share your goals and tasks with friends and family who can encourage you and help you make good on your promises.

The wise words of Benjamin Franklin said it best, “You may delay, but time will not.”

That’s what is in my noggin this week.  Now where is that list pad?  I’m ready to get things done!

~Teresa 🙂

Follow Nick:

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Instagram @ #nickdsautism

Twitter @tjunnerstall

 

 

 

 

 

 

 

 

 

 

 

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

Blog #204~ Lessons Learned from the Last Lecture

Blog #204~Lessons Learned from the Last Lecture

Randy Pausch was a professor at Carnegie Mellon and author of the national bestselling book, The Last Lecture.  He encouraged his students to attempt hard things and not worry about failing.  He would give out “The First Penguin Award” to the team who took the biggest gamble trying new ideas and technology, but failed to achieve their goals.  “This award celebrated out-of-the-box thinking and using imagination in a daring way.”  The title of this award came from the way that penguins jump into the water that might contain predators.  Somebody has to be the gustsy, first penguin, and take a bold leap into the unknown.

fail spectacularly

The takeaway is this, it’s important to attempt hard things and  you can expect to hit brick walls.  That is when you gain experience.

“Experience is what you get when you didn’t get what you wanted.”

This quote struck me as I was reading The Last Lecture over the weekend.  My son Nick, was born and diagnosed with Down syndrome.  Years later, he recieved a secondary diagnsosis of autism.  I didn’t get the “normal child” that I expected.  My path raising Nick has been very different then I had planned.  But along the way, over the past twenty-four years I’ve gained a great amount of experience in navigating my son’s journey.

Randy Pausch, a computer science professor gave his last lecture after receiving a diagnosis of terminal cancer, leaving behind a wife and three young children.  His book, The Last Lecture, co-written with Jeffrey Zaslow is a summation of everything Randy believed with some valuable lessons in “overcoming obstacles, enabling others, and seizing every moment.

There are so many lessons offered by Pausch in The Last Lecture.  I want to share a few that resonated with me, as a parent of a child with special needs.  When my son, Nick was born twenty-four years ago, I made some choices on how I was going to manage life.  I was dealt a set of cards, that I didn’t expect.  But soon realized, that I would have to play the hand differently.  This meant getting support to help my son reach developmental milestones and creating a home environment that supported his growth.  I also learned to reach out to parents, therapists and teachers with experience to help me understand how to help my son become the best he could be.

Randy Pausch cards dealt with

Another valuable lesson is in the approach to life when facing adversity.  Randy says, “Make a decision, are you going to be a Tigger or an Eeyore?”  A.A. Milne’s beloved Winnie-the Pooh characters are in two different camps.  I’d choose fun-loving Tigger over grumpy Eeyore every time.  Optimism can take you much further in life!

Randy-Pausch-Pooh-Quote

Here are a few more nuggets of wisdom from Randy Pausch, and how they relate to being a parent of a child, with special needs.  I found these lessons to ring true, especially navigating a dual diagnosis of Down syndrome and autism:

“All you have is what you bring with you.”

I understand all too well the need to be prepared for whatever situation the day may bring with my son.  What do I need to bring and what should I anticipate?  This could be anything from an extra set of clothes, spare iPod, PECS book, AAC device, snacks, Kleenex, stim toys and more.  Identify possible trouble spots/ triggers for meltdowns/messess and come up with ways to avoid these incidences.  Also, have a contingency plan in case as Randy says, “All hell breaks loose”.”

“All you have to do is ask.”

Randy tells a story about his Dad wanting to ride in the nose cone with the driver on the monorail at Disney World.  His Dad assumed they didn’t let regular people ride up there.  Randy told his Dad he had a trick and asked if his Dad wanted to see it.  He walked up the driver and asked, and the driver said yes.  You never know unless you ask, and this is true from my experiences working with doctors, therapists, teachers and other IEP members.  Ask for IEP drafts before the meeting, and to be included in your child’s goal planning.  Ask that the parent concerns (that you’ve written ahead of time), be put directly in the IEP at the beginning of the meeting.  These concerns will be a part of what drives the IEP.  Ask the doctor for whatever your child might need for their health like, prescriptions for therapy, nutritional supplements, evaluations for orthotics and to get all test results as soon as they come in.

“Start by sitting together”

This is essential when going to your child’s IEP (Individual Eduction Plan) meetings.  Randy’s approach to working with a group of people is simple.  Lay all the cards face up on the table and say to the group, “Ok, what can we collectively make of this hand?”  He offers a few tips for a successful group meeting like having optimal meeting conditions (make sure no one is hungry, cold or tired).  I’ll add in cramped rooms with  small chairs, as this has happened to me in past IEP meetings. Randy also adds, to let everyone talk, check your egos at the door and praise each other.  Finally phrase alternatives as questions, so instead of saying, “I think we should do A and not B” try saying,  “What if we did A and not B”.  This allows the team members to offer comments rather than defend their choice.  It opens up the discussion to get input from the whole IEP team.

The lessons that Randy Pausch shares in his book, are valuable.  Here are my takeaways as they relate being a parent of a child with special needs:

*Don’t be afraid to think outside the box and try something daring.

*If you hit a brick wall, learn from it and gain more experience.

*You can’t change the cards that were dealt, but you can change how you play the hand.

*Your approach in playing that hand can be with a positive or negative attitude, it’s your choice.

*All you have to do is ask.  They might say sure, why not.

*Start by sitting together, when it comes to IEP’s the team should come together to be solution oriented, not problem oriented in collaboration approach.

Thank you Randy Pausch for the valuable lessons you shared in The Last Lecture and for the reminder to take what you have learned so that you can help others who might be starting down the same path.

And as you navigate your path always remember this…..

Randy Pausch spending time

  That’s what is in my noggin this week.

~Teresa 

Follow Nick:

Facebook and Pinterest @Down Syndrome With A Slice of Autism

Instagram #nickdsatuism

Twitter @tjunnerstall

 

 

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 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, 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

backtoschool1

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:

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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

 

 

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

Mom,are you taking care of yourself?

Mom, are you taking care of yourself?

Pour Cup

Today, I took a page out of my own blog.  I took some extra time to do something that I love.  Last week I wrote about the importance of doing so.  Sometimes as moms, we are busy doing so much for others.  We don’t always carve out the time to put ourselves first.

In case you missed the blog last Monday, click below………

https://nickspecialneeds.com/?s=mom

It was a warm, sunny day and just perfect for planting.  Digging my hands is the soil was good for my soul.  Picking out the color palate of flowers and accents, along with some tomato plants is always so enjoyable to me.  It was a nice slice of peace and serenity that helped me to feel restored and energized. 🙂

flowers

I hope all of you moms had a wonderful Mother’s Day.  What are you going to take care of yourself this week?  Give yourself a decadent slice of something sweet that you enjoy, because YOU deserve it!  That’s what is in my noggin this week.

~Teresa 🙂

relax

Follow Nick :):

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Instagram #nickdsautism

Twitter @tjunnerstall

 

 

 

Posted in Parenting Special Needs

Blog #174~ Mom,Take Care of Yourself!

Blog #174~Mom, Take Care of Yourself!

A message to all of you moms out there in the trenches, up to your elbows in laundry, cooking, cleaning and wiping up snot, or changing countless dirty diapers…….

Pour Cup

Trying to be perfect and do everything yourself doesn’t work.  Sometimes the items you put on your to-do list get bumped to the next week or month.  Life gets in the way, especially if you are raising a child with special needs.  My son Nick is 23 years old, and has Down syndrome and autism.  There was a time when I would beat myself up.  I felt tremendous guilt about not doing enough for him, and the rest of my family.

The internal dialog was something like this…..

Nick’s not sitting up yet, I need to do more physical therapy exercises at home.   I shouldn’t be sticking in a Barney video all the time.  He should be potty trained by now, what am I doing wrong?  I don’t have enough time to spend with my older son.  There aren’t enough hours in the day to get things done around the house. 

This was the first lesson I learned.  Stop trying to be perfect and let go of the guilt….

There’s nothing wrong with having your own pity party every once in a while, along with a good cry.  But self-pity and guilt can eat away at your psyche and rob you of happiness.  It is at these junctures, that I learned to evaluate the challenges in front of me.  Prioritize what is urgent and act upon them.  The rest of the expectations, were often things that I put upon myself, causing more unwanted stress in my life.  Don’t get me wrong, the guilt still pops up on occasion.  But it doesn’t consume me anymore.

Which leads me to the second lesson I’ve learned…….

Make Time for Yourself

I’m no good to my family if I can’t let it go, and take care of myself.  What makes you happy?  Do it, get back to doing it!  Carve out niches whether it’s taking a walk outdoors, meeting a friend for coffee, reading a book, or getting back to a hobby you left behind once the kids were born.  Slow your pace during these times and savor the moments when you make time for yourself.

The third thing that I’ve learned, combines the two above.  It is the importance of finding balance…..

Balance

Life can be crazy with kids, running them around to therapy/doctor appointments, sports programs, and enrichment classes.  On top of those Uber duties, there is running a household and if you have a job outside the home, the pace can be non-stop.  A car can’t run from zero to sixty mph, without shutting off the engine and stopping to refuel.  What are you doing on your fuel stops?  When you turn that key and the motor stops, think about going to a place that gives you a simple pleasure.

On my pit stops, I tend to grab the remote to shut down, kick back and do nothing.  Sometimes it’s a binge watch of Fixer Upper on HGTV, other times it’s a show on The Bravo Channel (thank you Andy Cohen).  It’s a time to de-compress, relax and escape.  This “do nothing” time allows me to re-fuel.

As Mother’s Day approaches, my hope is for all moms to let go of the guilt, make time for yourself, and find balance and resist the urge to get everything doneTake care of yourself, you can’t pour from an empty cup!  When you find the balance, the happiness returns and there is more peace and fulfillment in your life as a mom.

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