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

Blog #213~Back to School Tips for Special Needs Parents

Blog #213~Back to School Tips for Special Needs Parents

There are a few more areas to consider when sending a child with special needs back to school.  Children with intellectual and developmental disabilities may not be able to understand change and transitions related to school.  The student’s language skills may be limited and they might have difficulty expressing emotions.  This can all lead to anxiety which can result in behavior problems.  You can help your child by planning ahead, getting organized and putting visual supports in place for the new school year. Here are 5 tips to ensure a smooth start to the new school year for your child with special needs.

backtoschool94

5 Back to School Tips for Special Needs Parents:

1. Look over your child’s IEP (Individualized Education Plan) before school begins. The IEP outlines academic and functional goals, supports needed, accommodations and services. Reach out to your child’s case manager/IEP coordinator or Support Teacher, and ask specifically how these will be implemented, and how data will be tracked.  If there is a Behavior Support Plan (BSP), review it, and make sure that all staff members working with your child have as well.  Note anything that might need to be tweaked in both plans, and share with the school staff.

2. Arrange a visit to the classroom before school begins.  Provide a profile/resume sheet about your child for the staff, containing any information that will help them understand their likes, dislikes, behavior and communication concerns.  Look for visual supports and a schedule posted in the classroom to enhance learning and understanding.  You can request that a social story (pictures or video); be made of the settings that your child will be in at school, (classroom, lunch room, gym, sensory area, etc.).  It also helps to include pictures of support staff and classroom peers (if possible), in the social story. If a child with autism can see it in picture and/or written form, they will better understand it.  Visual supports, social stories and schedules all act as blueprints to help your child navigate their day.  This will help them understand what is expected and occur, leading to reduced anxiety levels for your child.  The support teacher/ case manager can make these for you to read with your child before school starts.

Social Story for Back to School:

 

 

3. During the classroom meet and greet, arrange a mode of communication with your child’s teacher.  In the past I have used both email, texting and a communication notebook which goes back and forth.  My son, Nick has a dual diagnosis of Down syndrome and autism.  His verbal language skills are limited.  The communication notebook gives the child a voice that describes what their day has been like at school, and how they are doing at home.  This is especially helpful, if your child didn’t sleep well, and you can give the teacher a head’s up, to incorporate more breaks in the day if needed.  In addition to a communication notebook, the teacher can create a custom daily report to share with parents.  Depending on the skill level of your child, words or pictures can be used and looked at together at home after school each day:

Daily Report Charts:

4. Start Early! Get school supplies, clothes and shoes shopping done and haircut at least a week before the start of school.  Having a child with special needs often means a lot of angst over haircuts. For Nick the stress of getting a haircut use to affect him for several days afterwards.  Fortunately, now that my son is older the haircuts are much easier.  Maturity and a good set of clippers have made haircuts successful.  I’m super excited to share with you the new hair clippers that are a GAME CHANGER!  The Remington Short Cut Pro Self-Haircut Kit is cordless, smooth, quiet and quick as it takes more hair in a single pass.  It’s the most sensory friendly clippers we’ve ever used on our son.  5 Minutes and no tears!

 

The night before school starts, have your child help lay out the clothes, organize the school supplies and pick out lunch/snack choices.  This will help to set the tone for  a smooth start to the day and this helps especially at six o’clock in the morning. One thing that was NEVER EARLY; the school bus. Make sure you have carved out your schedule accordingly and have something for your child to do while you wait. On average, we’ve waited 30-45 minutes for the bus to get to our house the first few days of school.

5. Consider doing volunteer work at your child’s school. It is fun and you can see firsthand how your child is doing in the classroom.

Here are a few school volunteer ideas:
*Holiday Parties
*Art Awareness Presenter
*Chaperone Field Trips
*Field Days
*Picture Day
*Work book fairs
*Library aid
*Special Olympics Practices
*Assist Case Manager/ Support Teacher- Making copies, laminating, helping to create classroom supports.

Taking a few extra steps to get organized, familiarizing yourself with the IEP/ Behavior  support plan, visiting the classroom, and providing visuals for your child will lead to a smooth start to the new school year.  Getting involved as a classroom volunteer is rewarding and a great way to interact with student peers and school staff.  Careful planning, organization and providing visual supports will make things easier for your child starting back to school.  Do you have any back to school tips or tricks for your child with special needs? I’d love to hear them.

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

back to school bus

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

Blog #212~DS-ASD Behavior Management

Blog #212~DS-ASD Behavior Management

Behavior problems are common for individuals having a dual diagnosis of Down syndrome and autism.  Speech deficits hinder a person’s ability to communicate wants and needs, leading to these challenging behavior problems.   As I’ve mentioned in previous blogs, every behavior even the bad ones, are an attempt to communicate something.  For the past 24 years, I have experienced this on the front lines with my son Nick, who has a dual diagnosis of Down syndrome and autism.  It’s important to get a clear picture of what is triggering the problem behavior.  To do this, try taking a step back and determine what is causing the behavior.

For individuals with a dual diagnosis of Down syndrome and autism, some challenging behaviors include property destruction (such as dropping, throwing, dumping things on the floor, and breaking objects).  Other behaviors might include elopement, dropping and plopping, stimming, yelling, repetitive movements and physical aggression to name a few.

There are 5 steps you can take to discover the causes of a problem behavior and prevent it from occurring.  It is important to mention here that, these steps should be taken with the support of a child’s IEP team and ideally using a Functional Behavior Assessment (FBA) with a Board Certified Behavior Analyst (BCBA).  It starts with doing a little detective work.

Detective-clipart-animation-free-images-2

1.What is the problem behavior, describe it?

2. Observe when the behavior occurs and when it doesn’t?  

3. Make a guess about what could be triggering the behavior and what might be reinforcing it.

4. Come up with a plan to prevent the behavior including supports that will help improve it in the future.

5. Track the behavior to see if the plan and supports are working.

Let’s put this into practice with the behavior of a child throwing, dropping, breaking and dumping out things around the house (property destruction):

1.”Billy” returns home from school and goes upstairs to his parents bedroom.  He turns on the water faucets full blast, and takes a photo frame and throws it down from the top of the stairwell where is shatters to pieces.

2. The behavior occurs after school, as his mom is unloading the backpack and reading the communication notebook.  It also occurs when paren’s attention are diverted, (doing chores, talking on the phone) and while the child has down time.

3. The antecedents are sensory seeking, lack of attention, unstructured down tome and boredom. Billy is reinforced by getting negative attention from his parents, who naturally get upset when something gets broken or a mess is made in the house.

4. The plan is for Billy to have a more structured routine during those down times when parents are busy working around the house:

-Create an afternoon visual schedule for Billy to put away the contents of his backpack and engage him in the chores with heavy work (a calming sensory activity).

-Replacement activities will include jumping on his mini trampoline, carrying laundry baskets to the washing machine and loading it, or vacuuming.

-Billy will be reinforced with high fives and praise, followed by a reward, upon completion of these replacement activities.  Rewards may include a choice of a favorite toy, iPad, movie, or snack.

-Billy will also be redirected to use his AAC device (talker) to express his needs.

-Parents are encouraged remain calm, matter of fact with little emotion, making minimal eye contact while using a soft voice, when the child engages property destruction.

5. Parent and teachers will keep a log to track this behavior both at home and in the school setting.

Sample ABC Chart used to do a Functional Behavior Analysis:

ABC chart

Before identifying the antecedent, behavior and consequence on the ABC chart, it is important to look at the setting prior to when the behavior occurred.  Note any changes in medications.  Is the child sleepy, overheated or too cold?  Are there any disruptions in staff or transportation to and from school? Is the environment to noisy or quiet?  These factors can all play a part in causing behavior problems.

The best behavior plans have proactive strategies and supports to encourage good behavior.  In my experience, the behavior plan must be revisited several times a year and tweaked accordingly, to support positive behavior in a child with a dual diagnosis of Down syndrome and autism.  The key to behavior management is to step back and do the detective work, and come up with a plan to cut these behaviors off at the pass.  Working with the IEP team and a certified BCBA behaviorist to develop a behavior plan will lead to better responding thoughtfully to what the child is trying to communicate in their wants and needs.

That’s what is in my noggin this week.

~Teresa 🙂

Follow Nick:

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

Blog #211~50 Years of Special Olympics

Blog #211~50 Years of Special Olympics

Special Olympics 50 years

“Let me win, but if I cannot win, let me be brave in the attempt.” 

This is the motto of the Special Olympics, encouraging athletes to find the courage to give it all you got.

“The torch was first lit on July 2, 1968 when Eunice Kennedy Shriver ushered in a new era for people with intellectual disabilities, when — with 1,000 athletes from three countries — she opened the very first Special Olympics International Games at Soldier Field in Chicago.”

Two weeks ago, the torch returned here to Soldier Field here in Chicago, where it all started.  Fifty years later, the games have become a global movement reaching more than 5 million athletes.  Sport events include track and field, basketball, bocce, cycling, figure skating, soccer, power lifting, gymnastics, judo, tennis, swimming, skiing and bowling to name a few.

“Special Olympics is an international organization dedicated to empowering individuals with intellectual disabilities to become physically fit, productive and respected members of society through sports training and competition.”

My son Nick has a dual diagnosis of Down syndrome and autism.  Over the years, he has participated in Special Olympics competing in track and field, bocce and bowling.  The spirit, camaraderie and dedication of volunteers made the experience very rewarding for Nick and our family.  Watching the determined athletes is awe-inspiring.

Nick competing in the 50 yard dash at North Central College….. 

Nick backside special olympics

Nick special olympics podium

Nick showing off his gold medal earned at bowling…..

Nick special olympics bowling

Nick taking a bow at the top of the podium as they played the olympic theme song.  He won the State Special Olympics gold medal for the softball throw competing in down state Illinois…..

Nick Special Olympics

Nick competing in Bocce with his volunteer peer partner, Bobby.  Incidentally, Bobby (who is Nick’s brother’s best friend), has since gone on to become a Special Education Teacher in the north suburbs of Chicago…..

Nick special olympics bocce     nick special olympics bocce two

As my son entered high school, we had to put Special Olympics on the shelf.  Having a dual diagnosis of Down syndrome and autism made it difficult for Nick to participate without having a 1:1 aide at all times. This just wasn’t feasible.  As a parent, you can only do so much for your child.  I made the decision to put speech and occupational therapy first, rather than Special Olympics practice events, after school.  However, there were other inclusion opportunities for him in high school, which included Peer Partners and community trips with his respite workers.  Nick also participated in a wide range of P.E. programs with peer volunteers to assist and encourage him in high school.

Special Olympics has impacted the lives of athletes and volunteers for 5 decades.  Eunice Kennedy Shriver’s vision has grown from a flicker of the first torch flame, to an international movement.  “Special Olympics is dedicated to use the power and joy of sports to impact inclusion and respect – one athlete, one volunteer, one doctor, one teacher at a time.”  Congratulations to Special Olympics for 50 years of making a difference in the lives of individuals with intellectual and developmental disabilities!

eunice_dennedy

That’s what is in my noggin this week.

~Teresa 🙂

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Posted in Autism, Down syndrome, Resources for Special Needs

Blog #209~The Big 5-0 Fire Alarm Pull

Blog #209~The Big 5-0 Fire Alarm Pull

Well this happened over the weekend in St. Louis, Nick pulled his 50th fire alarm at a wedding reception.  The Unnerstall’s are a big family and like to celebrate in a grand way.  The venue was the Chase Park Plaza Hotel in St. Louis.  The cocktail hour was just wrapping up, as the procession began to move into the dining area, that’s when it happened.

firelite-pull-station

The fire alarm was tucked behind a curtain and only partially exposed.  That’s all it takes for Nick.  My eyes momentarily diverted to the photo booth area, just to the right of the curtain.  That’s when Nick made a run for it.  I dashed over in my 3 inch high heels, and grabbed his hand just as it grazed the alarm.  He got me, after an 8 year run with a clean record.  As his middle school teacher Jess told me once, “He’s cheetah fast!”

cheetah

Two young men in their twenties busted out laughing, one saying, “Man, I always wanted to do that.”  In the moment, I was not laughing.  But admittedly, it’s hard not to chuckle at the absurd number of pulls Nick has done since third grade.  We got someone to alert the hotel desk, that it was a false alarm.  Fortunately, they didn’t evacuate the building during that stormy evening.  We walked into the dining area as the lights flashed and the sirens blared loud for well over 5 minutes before they shut off.

I should add here that in Nick’s behavior plan, it calls to remove him from the building giving no reinforcement or reacting to his actions.  This reduces him from getting the rush he seeks from the loud sirens and lights flashing.  However, the venue was in the middle of downtown St. Louis with busy streets, being on the upper floor of the hotel, and stormy weather didn’t make it feasible to do so.  Visuals are used as well, these support a person who has autism.  He also has a social story that we review, however that seems to be ineffective.  Compliance commands are another tool we utilize.  If a directive has too many words, it may be too complicated for an individual with autism.  Thus, the individual may not be able to process the information.  Using compliance commands with fewer and concise directives help them to stay on task.  In the case of walking down a corridor, we use these two directives, “Big guys keep on walking” and “Hands to self, Nick”.  These compliance commands do help Nick to stay focused and remain on task.  Nick is then given praise and positive reinforcement for making good choices.

Nick is quite pleased at himself for adding to the wedding reception festivities, me not so much 😮 

Nick at Kurt Wedding

So how did this all begin?  Some individuals with autism are sensitive to over stimulation from a sensory standpoint.  Nick tends to actively seek out more sensory stimulation on a daily basis.  It all started innocently with car remotes keys.  Nick realized at an early age that if you push the red panic button, it sets off the car alarm and the headlights will flash.  He once took the key remote out of a babysitter’s purse, and proceeded to walk up to the front door, point it at her car and set off the alarm.  By third grade, he discovered fire alarms at his elementary school.  In a matter of 2 days he set the alarm off 3 times.  We’ve noticed a pattern over the years, that the alarm pulls tend to come in three’s.  Just last week, he set off an alarm at his day program when a staff member was tending to another client.  She thought Nick would remain on the swing in the gym.  But that’s when Nick strikes, just when you divert your attention, even for a second.

The first time Nick got me was leaving the doctor’s office, as I fumbled in my purse to get the car keys.  Another time, while I was wearing a clunky therapy boot, he let go of the grocery cart and darted to one at Dominicks 8 years ago.  His Dad “technically” has a clean record.  However, Nick nearly got one on Al, at Houston’s Bush International Airport where the alarms are painted silver.  Just recently, we attended Nick’s cousin’s graduation ceremony from Bowling Green State University.  Al took Nick to the restroom he came close.  Nick pulled up a cover which sets off a very loud mini alarm alert.

There’s been some good replies on social media, that have eased the sting of being the big 5-0, one being this, “I’m sorry but I just have to laugh.  I know that you probably don’t laugh when he does this, but the sign does say pull down.  So what else is he supposed to do?”  Another reply on Facebook, “Ever vigilant Nick!  He wanted to add to the excitement.”

Well, excitement is right, Nick sure did light up the wedding reception.  I guess if he’s going to pull #50 it should be in a big, fancy venue, surrounded by family.  Go big or go home, Nick!  This weekend is one for the memory book, and Nick gave the newly wedded couple a night they won’t forget.  As his tagline says, It’s Nick’s world, the rest of us are just trying to keep up.

That’s what is in my noggin this week.

~Teresa 🙂

Follow Nick on Social Media:

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Instagram #nickdsautism

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Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, Fun Side of Nick, Recreation/Leisure and Special Needs

DS-ASD Nick’s Summer Update 2018

DS-ASD Nick’s Summer Update 2018

We have a lot to share after a three-week blog break.  Nick’ been flying the friendly skies and having a blast on vacation!  My son Nick is 24 years old and has a dual diagnosis of Down syndrome and autism.  This week, find out what Nick’s been up to this summer.

Vacation started with a family reunion in Branson Missouri.  I haven’t flown solo with Nick in quite a few years, so I was feeling a little anxious.  I checked the flight status on my phone, while in the taxi heading to the airport. My jaw dropped, our flight got canceled due to aircraft maintenance.  This was the last thing I needed.  We were directed to United Airlines Additional Services line.  The gentlemen in front of me, smiled at me and Nick, saying “This is the line you don’t want to be in.”  I was nervous and saying prayers as we waited for nearly 30 minutes…….

Nick airport additional services

Fortunately, we got re-booked on another flight that was leaving at the same time.  Nick and I navigated the corridors  of O’Hare as we have done multitudes of times as a family.  We made it to the gate with 10 minutes to spare.  There was no time for a quick bite to eat, as I had alloted in my timetable.  So, I had to buy the most expensive bag of Cheez-Its to make do.

Airport Cheez-Its= Cha-ching $5.00  I should have taken my own advice from Blog #208~ https://nickspecialneeds.com/2018/06/11/blog-208vacation-tips-for-parents-of-a-child-with-special-needs/and packed some snacks.

cheezits

The family reunion was a great time and opportunity to catch up with everyone.  My mom’s side of the family has a reunion every two years.  This year was hosted by Uncle Jackie and Aunt Karen with over 100 members attending.  The resort and accommodations were wonderful.  Best of all the Overbey family give the warmest hugs.  Nick had a great time and got a couple of special gifts from his aunt and uncle.

Autism awareness bear from Aunt Mary…

NIck Autism Bear

Fire alarms from Uncle Robert…

Nick fire alarm at branson

A few weeks later, we made our annual trip to Virginia and the Outer Banks in North Carolina.  Nick’s uncle and aunt have property in both places.  Here are the highlights from VA and OBX….

Vacation in VA started out in Nick’s happy place….

nick pizza in va

The views in Virginia are breathtaking.  This property sits overlooking the James River. Uncle Ron was a gracious host on our visit here.  Time spent here is about unplugging, relaxing and enjoying the peaceful atmosphere…

VA view

Nick swing VA 2018

We did a few tours while in Virginia.  One was Blenheim Vineyards, established in 2000 by owner, singer and artist Dave Matthews.  The venue is laid back, with a deck overlooking the vineyards with a nice wine tasting offered.  On another day, we toured the Virginia Distillery.

VA whiskey

Uncle Ron and Nick’s Dad, Al sampling whiskey….

whiskey al and ron

Nick is not so much of a fan 🙂

Nick whiskey

Our second part of the trip was in the Outer Banks in North Carolina, also known as OBX.  Here are some of the highlights:

When you see this sign, it’s time to exhale, let go of all your worries and chill….

OBX signs 2018

Currituck Lighthouse…..

Curriteck Lighthouse

Floating on the lazy river pool…

Nick lazy river in obx

Nick standing guard at the crow’s nest…..

Nick ruling crows nest

Nick always manages to find the vacuum at Uncle Ron and Aunt Ali’s beach house.  He’s practicing his independent living and job skills……

 

For the first time in many years of coming to OBX, Nick wanted to spend a lot more time on the beach.  He’s never been a fan of the sand, however this year he put on his socks and shoes and came out almost everyday.  Wearing tennis shoes and socks, along with sitting in the higher beach chair, helped him cope better with the sensory issues associated with sand!

View of Duck, OBX beach…..

obx view 2018

Nick’s Dad and Brother……

Al and Hank obx 2018

Nick and his brother Hank, taking in the sunset at OBX….

Hank obx 2018    nick and hank obx 2018

Nick flirting with his brother’s girlfriend, Kristin on the crow’s nest 🙂

Nick and Kristin OBX

Cheers from me and Kristin, beach hair, don’t care….

k and me obx

The vibe in the Outer Banks is calm, family oriented and chill on the beach.  You take in the ocean breeze and the sound of the waves hitting the sandy shores and feel the tension melt from your body.  Turn the knob to Bob, FM 93.7 radio and sip on a cool beverage, leaving your worries behind.  Nick feels very comfortable here.  We are extremely grateful for the opportunity to vacation here each year, at Ron and Ali’s beach home.  This year was not the same, without Ron, Ali, Sam and Anna.  We send our love and best wishes to the family and wish Ali a speedy recovery.  Cheers to making more memories with EVERYONE together, sharing laughs and lives at VA and OBX, next summer.

Beach Fixes Everything

It’s been a great summer for Nick and our family, along with extended family.  Vacations are great to unplug, relax and restore the body and soul.  We hope that you get a chance to enjoy a nice vacation.  What’s everyone doing this summer?

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

~Teresa

For more pictures of Nick follow on social media:

Facebook and Pinterest @Down Syndrome With A Slice of Autism

Instagram @nickdsautism

Twitter @tjunnerstall

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:

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Instagram #nickdsautism

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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?

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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.

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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…..

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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:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram @ #nickdsautism

Twitter @tjunnerstall

 

 

 

 

 

 

 

 

 

 

 

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

Blog #205~Post Mother’s Day Advice

Blog #205~Post Mother’s Day Advice

Being a mom can often result in feelings of guilt, and second-guessing decisions that you make for your children.  As a mother of a son with special needs, this is even more heightened.  Now, you see it on social media.  There are so many individuals with special needs, succeeding in new therapies, Special Olympics, and going to prom.  This creates added pressure to do even more for your child.  After 24 years of raising my son Nick, who has a dual diagnosis of Down syndrome and autism, I have gone through all these feelings of not doing enough.  This week, I ask that you STOP and take a breath Moms!

unplug it quote

After you stop and take that breather, you can re-boot and move forward, and re-evaluate what your child needs at this point in their lives.

*Are the current therapies and interventions effective?

*What other programs are available, that might be a better fit?

*What type of activities can be incorporated at home?

In the following blog, I outline how to re-evaluate current activities along with implementing effective TEACCH method ( Treatment and Education of Autistic and Communication which is an evidence-based service, training, and research program for individuals of all ages and skill levels with autism spectrum disorders).  The TEACCH method is a structured program that helps individuals with ASD to learn, function and reach their goals.  Incorporating TEACCH activities at home can be a time saver, instead of running around multiple times a week for ABA (Applied Behavioral Analysis) therapy.

Click here to view:  https://nickspecialneeds.com/2017/08/07/blog-180special-needs-momslet-go-of-the-guilt/

Nick doing TEACCH Method at home 🙂 (video version available on our social media sites listed below)…………..

nick folding washcloths

For more information about Applied Behavioral Analysis (ABA) TEACCH Method click here: https://www.appliedbehavioranalysisprograms.com/faq/what-is-the-teacch-method/

My advice post Mother’s Day, is to take a deep breath and re-evaluate current programs for your child.  Decide which are effective and relevant, at this time in their lives.  Are these therapies and interventions the most efficient use of time for your family?  Prioritize and determined what you can scale back on.  Consider implementing the TEACCH activities at home to save time.  These activities help to build new skill sets, confidence and independent living.  Finding the balance for your child with special needs along with your family is key.  It will also help you as the mom to feel less guilty, and more confident as a parent.

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