Posted in Autism, Down syndrome

Blog #99~ *Essential Oils and Sleep

Blog #99~ *Essential Oils and Sleep

*The statements on this blog regarding essential oils are my personal testimony only. Any claims made for the products listed below are based on the experience of my son, Nick who has Down syndrome and autism. The products have not been evaluated by the FDA.

Recently, there was a discussion about essential oils on one of the Down syndrome & autism Facebook groups that I belong to. A couple of mums from England described the benefits of using Bach Flower remedies to promote better sleep. I decided to do some research on essential oils to see if they might benefit Nick.

Here’s what I pulled off the website: http:// www.bachflower.org

bach flower logo

“Bach Flower Remedies were invented and developed by Dr. Edward Bach about 80 years ago. Dr. Bach isolated and classified 38 flowers from which he extracted 38 essences with which he succeeded in healing patients’ ailments while taking    into account their individual emotional states. Dr. Bach found that certain flower essences led to self-healing, as they purified the patient of negative elements that adversely affected their health.”

There is a difference in Bach Flower Therapy and other essential oils.  I found the following link which contains more information that further distinguishes them: http://goodworkswellness.com/difference-between-bach-flower-remedies-essential-oils-and-herbal-tinctures/.

Essential oils work on the body, mind and soul.  I learned that these oils were more than just a fragrance.  They can provide immense health benefits for humans and animals. They are natural, non-toxic and non-habit forming. The oils can be administered topically, aromatically, and most can be taken internally.

bach flowers

When using them topically add 1-2 drops to carrier oil (such as coconut or olive oil) and massage over a large area.  Avoid rubbing essential oils on the skin directly, always mix them with a carrier oil.  You can rub the mixture on the bottoms of the feet or back of the neck at the brain stem and gently massaged into the skin. The second way to administer the oils is aromatically using a diffuser. The third way is internally.  It is best to assume that an essential oil should not be used internally, unless the product has been specifically labeled as safe for internal use.

After doing this research I decided to give it a try.  I’d welcome anything that would help Nick sleep through the night.

autism and sleep cartoon

I went to Fruitful Yield, a natural food and vitamin store (in Oswego, Illinois), where a very helpful staff guided me to a few types of the essential oils.  Here’s a sample chart of some of the oils:

bach flower chart 2

I decided to pick one Bach Flower remedy called “Vervain,” which helps you to relax when you are over enthusiastic or strongly driven.  The second oil was suggested by the staff person at Fruitful Yield……

“Now Essential Oil Peaceful Sleep”………

Peaceful Sleep Oil

The Now Diffuser was very easy to use and priced at $30 dollars.  It BPA-free and utilizes high-frequency ultrasonic electrical vibrations to create an ultra-fine aromatherapy mist.  Also, it doesn’t utilize heat, which maintains essential oil integrity and holistic properties.  You simply fill it the line with tepid water, put a few oil drops in and push the button.  A plume of mist filled with the scents of orange, tangerine, lavender, chamomile, ylang ylang oils along with sandalwood in the Peaceful Sleep Essential Oil then fills the air. It is a floral citrus aroma with benefits to calm, relax and soothe.   The Now Diffuser also has a light that changes colors intermittently.

 Nick’s out like a light  🙂 ……….

aromatherapy

After using the diffuser with the peaceful sleep oil for two weeks, I am happy to report that Nick is sleeping much better.  There is a notable difference.  Nick is relaxing and falling to sleep much quicker than he usually does. He is also sleeping without interruption almost every single night.

I haven’t tried the Bach Flower Remedy yet since the Peaceful Sleep Oil is working like a charm for Nick. This experiment with using essential oils to help with sleep has been very successful for Nick.   As I have mentioned in other blogs that I’ve written, it’s good to think out of the box. That’s what is in my noggin this week. 🙂

~Teresa

thinking outside the box

 

 

 

 

Posted in Autism, Down syndrome, Resources for Special Needs

Blog #98~More Special Needs Resources

Blog #98~More Special Needs Resources

How do I even try to come close to topping last week’s blog post?  Ryan Solomon’s story about being Nick’s Peer Partner touched so many people.  This post got 1,750 views (the most ever) on my Facebook Page Down Syndrome With A Slice Of Autism!  🙂 Just in case you missed it, here’s the link, and don’t forget the box of tissues:

@https://nickspecialneeds.wordpress.com/2014/06/02/blog-97-being-…s-peer-partner/

Nick and his Peer Partner Ryan…..

Peer Partners

This week is all about more resources related to special needs.  During the recent NADS Family Behavior Retreat, I lead a brainstorming session to pool together all the resources the parents had.  We put our noggins together and found support in these areas:

*Autism Support and ABA Therapy

*Advocacy and Legal

*Doctors, Dentists and Specialists

*Therapists

*Recreation and Leisure

*Online Support Links

*Toileting and Personal Care

*Tech Support and AAC Devices

*Safety and Wandering Prevention 

Here is what we came up with.  There are many more that are based out of the Chicago area that are not listed below. If you would like those as well drop me a message.  Please note: This is a parent recommendation list.  NADS does not endorse, recommend, or favor any products, processes or services on this list.

Autism Support and ABA Therapy: 

www.easterseals.comEaster Seals offers programs, training and equipment for families

www.theautismprogram.org Autism resources

Advocacy and Legal:

www.SpecialNeedsFreedomGuide.com Free Estate Planning Guide

www.LifesPlanInc.org  Estate planning

www.specialneedsadvocacy.wordpress.com Advocacy for parents

www.specialedadvocacy.orgAdvocacy site for parents and teachers

Doctors, Dentists and Specialists, Therapists (are all Chicago based)

Recreation and Leisure (most are Chicago based but here are a few others):

www.nps.govNational Park Services free camping tent and tools for first time campers

www.discovernac.orgNational Abilities Camp in Park City, Utah

www.thebikerack.com Special needs bikes and bike modifications in St. Charles

www.joniandfriends.orgParent/child camp in Michigan

www.gigiplayhouse.org Down syndrome Awareness Centers

www.icanshine.org Loose the Training Wheels bike camp

diveheart.org  Scuba and Snorkeling for persons with disabilities

www.bigbeadjewelry.com  Special needs micro-enterprise

www.specialsparkle.com Jewelry micro-enterprise run by a young adult with Down syndrome

www.downsdesigns.comSpecialty clothing and jeans that fit

hammertravel.orgTravel opportunities for special needs

Online Support Links:

www.parentcenterhub.org  Extensive information and help with links your state/local agencies

www.behavioradvisor.com/FBA  Behavior support site

www.myautismteam.comNetwork site for parents

www.bridges4kids.orgGreat Resources for special needs families.

www.mayer-johnson.comBoardmaker software

www.teeach.comInformation on TEEACH materials

www.bridges4kids.orgIEP Goal helpful ideas

www.noahsdad.comEnjoyable site highlighting Down syndrome

Toileting and Personal Care:

www.especialneeds.co/diapers-pads-incontinence-swim-diapers.html

www.Theraquatics.com  Swim diapers for child and adults

www.incont.org  Diapers, swim diapers and related products

wetstop.com Bed wetting alarms

Tech Support and AAC Devices:

www.easterseals.orgAssistive tech evaluations and training

www.mydynavox.com Free 30 day trial app available ($29 monthly thereafter)

www.silver-kite.com/touchChatCommunication application for iPod/iPad technology

www.assistiveware.com/product/proloquo2goAugmentative and Alternative Communication

Safety and Wandering Prevention:

www.awaare.org.  Autism Wandering Awareness Alerts Response Education has a comprehensive list of tips, materials and tools.

www.medicalert.org Medical ID bracelets

www.projectlifesaver.org Tracking system located in various cities

www.caretrak.com GPS Tracking bracelets connected to participating police departments

safetynetbylojack.com  GPS tracking device for wrist or ankles

caretrak bracelet

There are more resources and links in Blog #84 and #85 (located in the February 2014 archives). If you have any others please share them in the comment section below. This list (much like Nick’s behavior plan and * painting the Golden Gate Bridge) is never quite complete and always evolving.

Golden Gate Bridge with the family and my niece Courtney when we lived outside San Francisco 15 years ago.  Note barefoot Nick (he would never keep his shoes on back in then)…….

golden gate bridge

That’s what is in my noggin this week. Stay tuned for more about Nick’s world next Monday. 🙂

~Teresa

*According to goldengatebridge.org:  There are a couple of misconceptions about how often the Bridge is painted. Some say once every seven years, others say from end to end each year. The truth is that the Bridge is painted continuously. Painting the Bridge is an ongoing task and a primary maintenance job. The paint applied to the Bridge’s steel protects it from the high salt content in the air which can cause the steel to corrode or rust.

Posted in Autism, Down syndrome, Education and Special Needs, Recreation/Leisure and Special Needs

Blog #97~ Being Nick’s Peer Partner

 

Blog #97~Being Nick’s Peer Partner

This week, I am very excited to share this piece written by Ryan Solomon.  Ryan was Nick’s peer partner at Metea Valley High School.  The Peer Partner Program operates in conjunction with the Adapted Physical Education Department.  It allows selected students the opportunity to provide mentorship to students with a variety of abilities.  Ryan’s experience with Nick, (who has Down syndrome and autism) inspired him to write this essay for college consideration. 

Essay by Ryan Solomon:

“My application lists my three–‐sport varsity achievements –including all–‐conference and all–‐academic in soccer, basketball and baseball.  You might think I’m a competitive, insensitive jock. So, you may find it ironic that I applied to “opt out” of PE class. Two years ago I was selected as a “Peer Partner” with 26 other students to assist special needs students in Adaptive PE.  I have thoroughly enjoyed the experience – especially last year. I’ve learned that I am sensitive and caring from my yearlong association with a person that has had a significant influence on me, my “Best Buddy” Nick Unnerstall.

Nick is severely mentally challenged and barely able to speak. Last year, when I was “peer partnered” to swim with Nick, I was afraid it would be a daunting task. Before we met, I expected to see a sad child scared of the school’s enormous swimming pool.  Instead, when I got to the pool, Nick, wearing his floaters, jumped in fearlessly.  We swam together the entire period.  The look on his face was refreshing–‐full of curiosity and wonder.  His smile beamed ear to ear.  The instructor thought it would be difficult for me to handle Nick daily -from preparing to swim, swimming and getting him to class –but that was not the case!  Her concerns disappeared as Nick and I bonded nearly instantly.  We showed up excited to swim every day.  Swimming was the one thing that Nick looked forward to each day.

After class I’d help Nick to lunch.  We’d just smile even though no words were shared.  Simple motions and expressions allowed us to communicate.  This daily routine put my life into perspective.  I used to think it was tough having homework and a game on the same night; dealing with a sports injury; or getting caught up with drama among friends.  None of this compares to what Nick goes through every day and for the rest of his life.

Through Nick, I’ve learned to appreciate all that I am able to do and have learned not to take anything for granted.  Before Nick, I believed I deserved starting positions in sports, or recognition and respect from my peers regardless of my actions. I put myself in his shoes and can see the adversity Nick faces each day from trying to be understood to struggling to get down the hallway crowded with students.  I now realize no one deserves anything without hard work. Although I believe I work hard athletically and academically, it does not compare to the Nick’s challenge to speak or get in and out of the pool.  Now, I work hard at being a compassionate and caring person.

Because of Nick, I am thoughtful of what I say and do.  I have become much more aware of those around me.  Nick shows me there is more to my life than academics and athletics.  With Nick and Peer Partners, hard work, compassion and caring helps me help others.”

Ryan and Nick 🙂

Peer Partners

Reading this essay warmed my heart.  As his mom, it is wonderful to know that Nick has made a difference in Ryan’s life and no doubt many others.  Ryan just finished his sophomore year at The University of Illinois.  I would like to thank him for sharing his story of working with Nick.

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

~Teresa

 

 

 

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

Blog #96~ Best Buddies Program

Blog #96~ Best Buddies Program

Spring is in the air!  I scrolled the Facebook wall over the weekend admiring all the beautiful gals dolled up in their prom dresses and the young men looking so handsome in tuxedos.  It’s a rite of passage for high school students, but one that my son Nick never had a chance to experience.  Nick has Down syndrome and autism and the prom just wasn’t in the cards for him.  But enter this awesome program called *Best Buddies. 

Students like Nick who have intellectual and developmental disabilities are often isolated and left out of traditional school activities.  That’s where the Best Buddies program comes in.

The Best Buddies program fosters one-to-one friendships between students with and without intellectual and developmental disabilities (IDD).  Best Buddies helps to create an inclusive school climate breaking thru social barriers at an important time in a young person’s life.  This non-profit organization is dedicated to establishing a global volunteer movement that creates one-to-one friendships, integrated employment and leadership for people with IDD.  Founded in 1989 by Anthony K. Shriver, Best Buddies has grown internationally from one school chapter to 1,700 middle schools, high schools and college chapters worldwide. Best Buddies has eight formal programs impacting 800,000 individuals both with and without intellectual and developmental disabilities worldwide.”

Best-Buddies-logo

How did Best Buddies impact Nick’s high school experience?  Because of Best Buddies, Nick was able to enjoy a wide variety of extra-curricular activities. Each month the group participated in meetings, community volunteering, parties, and social events such as bowling, going to the movies, out to eat and to local parks.  In addition, the group hosted two dances a year.

Nick volunteering at a Knights of Columbus  fundraiser……

Knights of Columbus

Nick heading to the Best Buddies Spring Dance……

best buddies dance

Nick looked forward to these events and being paired up with his peer partners.  I am very grateful for these students who volunteered their time to the Best Buddies program. Nick had a special connection with each of his peer partners. This program truly enriched his high school experience.  That’s what is in my noggin this week.

~Teresa 🙂

For more information on Best Buddies: http://www.bestbuddies.org

Posted in Autism, Down syndrome

Blog #95~ Do Just One Thing

Blog #95~ Do Just One Thing

It feels like a Monday morning.  I’m bouncing around from one thing to the next and getting off track in the process.  I started a load of laundry and took off upstairs to grab my sweaty gym clothes. Speaking of the gym, what playlist am I going to use for spin class tonight?  I paused at the bottom of the stairwell to rescue a drooping hydrangea flower which badly needed water. While upstairs I made the bed, grabbed some hangers and scooped up another basket of dirty clothes.  I heard a strange noise coming out of the laundry room.  The spin cycle wasn’t working on the trusty Kenmore, crap!  I sat down at the computer to schedule a service appointment, but the dryer buzzer went off.  I’d already hit the fluff cycle twice.  Stop and fold them now T!    I tried the spin cycle a few more times, but no go.  After wringing out each piece of clothing and putting them in the dryer, I sat back down to the computer.  What was I doing on it earlier?  I better pop another K-cup in, I have lost my focus.

K-cup

 The phone rang and on the other end was a message regarding problems with DHS (Department of Human Services) and an old timesheet from April 2013.  That’s just great.  What was I going to do on the computer?  Oh, that’s right I need to schedule a service appointment. Sometimes I wonder…….

Do I have ADHD?

ADHD

So, here is my to-do list for the week:

Finish resource list for NADS

Schedule NIU lecture and get respite for Nick

Fill out PACT survey

Deposit Nick’s stipend checks

Write article for NADS newsletter

Research essential oils and Bach Flower Remedy

Make Nick’s visual shopping list for fridge

Get eye exam (I am completely out of contacts)

Write thank you notes

Plant flowers

Over half of the list items are related to Nick and his special needs. Managing his adult affairs has become another part time job.  But, I refuse to freak out today.  I’m certain that there are lots of moms *running around like a chicken with their head cut off, much like me.

chicken with head cut off

I am going to follow my own advice from last week’s blog.  Don’t beat yourself up T.  Prioritize this list.  So I made the service appointment- Check!   As for the rest,  I’m going to take a breath, slow down and focus on just one thing.  That’s what is in my noggin this week!

~Teresa 🙂

*According to Wiki Answers:  A chicken with its head cut off tends to still run around aimlessly for several minutes after death. This is because the nerves in the body are still active for a short time. The saying “like a chicken with its head cut off” is a shortened version of “running around like a chicken with its head cut off”

 

Posted in Autism, Behavior/ ABA, Down syndrome

Blog #94~Advice for Special Needs Moms

Blog #94~Advice for Special Needs Moms

I’ve been raising a child with special needs for 20 years. My son, Nick has Down syndrome and was later diagnosed with autism. Being a parent is rewarding but also challenging and stressful. Having a child with special needs amplifies things even more. I’ve felt ashamed, exhausted, and frustrated piling on mounds of guilt along the way.  With Mother’s Day coming up I’ve been thinking about a few things. What advice would I give to that 33 year old mom back in 1994?

Joleene Pic

Advice for Special Needs Moms- 5 Things I’ve learned

1.  Let go of being the helpless victim. Take back control and commit  yourself to action. Ask for help and accept help from family, friends, teachers, therapists, support groups and special needs agencies.

2.  Adopt a new attitude when you feel bogged down.  How about this mantra? “Today I will do just one thing to move me forward to where I want to be.”

3.  Learn from others but set your own course. It’s easy to be overwhelmed when you see other moms trying gluten free, casein free, organic dietary programs, experimenting with essential oils, driving all over town to ABA behavior/OT/PT/Speech therapy programs and recreational activities. Forgive yourself, let go of those feelings of inadequacy.

4.  Which leads right into GUILT!  Society’s expectations don’t have to be yours. Don’t let anyone pack your bags for a guilt trip.

pintrest cartoon

5.  Take time to breathe, pray, meditate, exercise and feed your soul. A rested mind, body and spirit will help you navigate those rough, rocky roads.

zen

Do I follow this advice every day? Hardly, this morning I procrastinated  waiting until Nick ran out of his meds before making  a doctor appointment. I also threw out a package of moldy hot dog buns buried in the pantry. The floor hasn’t been mopped in two weeks and I sat around like a slug watching this movie for the umpteenth time with Nick yesterday….

The other guys

Do I feel guilty about it? Not near as much as I use to. The mounds of guilt have been reduced to a few, small piles I step in from time to time.

So, to all the special needs moms out there I wish you a Happy Mother’s Day. Slow down and do something you enjoy.  Go have a glass of wine with your girlfriends. Take a day or at least an afternoon to do nothing but fun things you enjoy. Please carry that with you each day as you make your way down that rocky road. That’s what is in my noggin this week.

~Teresa 🙂

Nick Sox game

Posted in Autism, Behavior/ ABA, Down syndrome, Uncategorized

Blog #93~Down Syndrome & Autism and Getting Help

Blog #93~Down Syndrome & Autism and Getting Help

Last Saturday was the National Down Syndrome Association (NADS) Retreat. NADS serves families in the Chicago area.  This retreat is specifically for families that have a child with Down syndrome and autism. There is a children’s program that includes play time and swimming where respite workers are provided by NADS. Nick loves going to the retreat.

Nick enjoying pool time at the NADS Retreat a few years back……

Nick 2 (2)

The children’s program also has music therapy.  Here’s Nick jamming last Saturday……..  🙂

nads retreat music therapy

The parent agenda this year was to tackle some of  areas that we’ve all been struggling with.  Dr. Louis Weiss, Ph. D. lead a guided discussion of the top five topics chosen by the families attending the retreat. The five areas of discussion included:

  1. Getting respite care and funding for it.
  2. Teaching
  3. Behaviors
  4. Parental and family stress
  5. Dealing with systems.

One family posed the question about their child and regression of behaviors. Dr. Weiss made a comment which resonated with me. He said that regression can happen during periods of transition. Regression is a way to prepare oneself to move forward. If a person doesn’t feel safe they will pull back first before they can launch themselves forward.

I had as Oprah says an “Ah-ha moment”.  Last fall, my son Nick (19 years old) out of nowhere began to wet his pants repeatedly at school. I figured it was stress because he was starting the new transition program. But after hearing this comment it all made sense now. He was trying to deal with a new setting and a crowded bus. Nick didn’t feel secure and his behavior reflected just that.

Speaking of stress, there is a great deal of it for families raising a child with Down syndrome and autism. Let me put a lens on what we talked about. Imagine having to wash the sheets every day after your 14 year old wets or soils them.  Or how about this?  The constant worrying that your 12 year old may take a dump in the neighborhood pool and shut it down. Picture a 15 year old getting off the bus and plopping down in the middle of the street.  He won’t  budge for a solid hour.  You have to stand there and direct traffic around him because no one stops to help out, and you forgot your cell phone.

Here is the takeaway that I got from this session. Dr. Weiss suggested that we need to figure out what causes us to suffer. Then look at re-framing the story, in essence figure out a way to fix it. Maybe it’s hiring a sitter to come in and wash those dirty sheets. Perhaps counseling could help with the stress.  In addition, just getting  a new set of eyes on the problem may help.  This can be done by contacting an advocate or behavior support specialist.

We spent the afternoon building a resource list, networking, sharing our struggles and offering advice to support each other. By the end of the day, parents walked away loaded with more power in their arsenals. I am grateful to have the support of NADS and the retreat. It’s good to share struggles, successes and get help.  Plus, no one in our group bats an eye if a kid is tapping shoe insoles against their mouth, stimming on a karate belt or plopped right in the middle of the corridor.  These guys remind me that I’m not alone on this road navigating Down syndrome and autism. That’s what is in my noggin this week.

~Teresa

🙂 One last thing, Did you notice I changed the title of my blog to Down Syndrome With A Slice of Autism? (Though some days I think it’s the other way around) 🙂

cropped-lemon-one.jpg

I also have a new Facebook page with this title. You will find some new things here including weekly videos of Nick being silly. If you are on Facebook,  please take a look at this page: Down Syndrome With A Slice Of Autism and I’d appreciate it if you would like the page!like button

 

 

 

 

 

 

Posted in Autism, Down syndrome, Feeding, Personal Hygiene, Toileting, Uncategorized

Blog #92~One Yellow Hash Mark at a Time

Blog #92~One Yellow Hash Mark at a Time

I just finished this book written by Chad Hymas:

chad

Chad had everything, a beautiful wife, two sons and a thriving business. One evening he made a rushed decision to ignore safety in favor of getting home quickly. Chad was anxious to see his baby boy take his first steps. On that day in 2001, at the age of 27, his life changed in forever when a 2,000-pound bale of hay shattered his neck leaving him a quadriplegic.

What follows is the story of how he fought back to gain his independence and ultimately setting a Guinness World Record by wheeling his chair from Salt Lake City to Vegas (513 miles) in 2003.

gwr

This was no easy task for Chad. There was some good news. His spinal cord wasn’t severed. He was able to regain important functions and have wrist movement as well as function in his biceps. In the book, he talks about starting out with his “personal Guinness records”.  They were the very basic things that most of us take for granted like putting his own shirt on, brushing his teeth, shaving, and even getting his drivers license. Chad overcame unsurmountable obstacles and continues to inspire others with his message on all 7 continents and 38 countries. He did it by letting go of his old ideas of who he thought he would be and reinvent himself.

The quest to set that Guinness World Record was daunting. The first few days went well. But the desert heat beat down on him, leaving his hands blistered and bloodied. He hits a wall, not able to fathom going another six days. His dad tells him to think of it as one day, not six days. He says “Just do one more day”. With his Father’s encouragement he broke down the goal into smaller increments. One day at a time became one mile at time. He was 90 miles away from his goal. But the mile markers seem too far apart. His Dad steps in, “Son, don’t give up. Break down the goal even more. Instead of mile markers, count the yellow stripes in the middle of the road. They come faster. See if that helps.” After eleven days Chad Hymas crossed that finish line setting a new Guinness World Record!

As I read his powerful message, I thought of all the “personal Guinness records” that my son Nick has mastered. Nick is 20 years old. He has Down syndrome and would later be diagnosed with autism. Low muscle tone is a trait of Down syndrome. It affects not only gross motor skills but also chewing and swallowing food.

A very low tone Nick flopping over on his brother, Hank……

scan0007

My son would not eat textured foods nor would he walk until he was nearly 4 years old. All the tasks to get him there were broken down, just as Chad Hymas did. It took Nick a long time to become independent with dressing, brushing his teeth and shaving. But he has hit all of those benchmark and then some.

I never imagined Nick would be able to do something like scuba diving…

Diveheart 2013 336 

Chad Hymas reminded me of something important. “Shift the focus on what I can do.”  His friend and mentor, Art Berg was right, “You and I can do anything anyone else can, if you’re willing to do it differently.” As I continue to help Nick become more independent, I am going to keep Chad in mind and tackle each task one yellow hash mark at a time. That’s what is in my noggin this week.

~Teresa

For more information about Chad Hymas: http://www.chadhymas.com

 

Posted in Autism, Behavior/ ABA, Down syndrome, Fun Side of Nick

Blog #90~Autism Awareness Nick Style

Blog #90~Autism Awareness Nick Style

It’s April which is “Autism Awareness Month”. Believe me I am quite aware of autism. Nick never lets me forget, nor anyone else who is around him. Last week was spring break. My twenty year old son who has Down syndrome and autism was lighting up more than just blue. Here are the highlights…

Day one of spring break:

Nick is pushing every button he can find, microwave and bathroom fans, turning up the TV volume to 99 and finding the one button on the iPod home which blasts Hispanic radio music. It’s going to be a long week. The music is heavily laden with the sounds of trumpets, trombones and accordions. By the way, the radio station is WLEY-FM (107.9 FM La Ley) features a regional Mexican music format focusing on Ranchera.

la ley

Day two of spring break:

It started out with Nick popping up at 6:30am. He came in and pressed the iPod home button to 107.9FM next to my bed as he giggled and let out a big fart. He followed this up with an early screening of “Grown Ups” (volume level 99) and blasting the water faucets. Thankfully Lara, his respite worker took him to see the new Muppets movie and out to lunch. That afternoon, he crawled into bed with his DVD player wearing his blue sunglasses. The “Grown Ups” movie may get deep sixed before this week is over.

IMG02 (3)

Day three of spring break:

I got a 5:15am wakeup call from Nick, (mind you on any school day I have to throw a stick of dynamite in his bed to wake him up). I put him back to bed and managed to sleep in until 7:30am. Morning coffee time was drowned in you guessed it another showing of the movie, “Grown Ups”. All day long nothing but yelling, tennis ball can tapping, and microwave/ phone intercom button pushing. In between those antics, Nick would run upstairs to push the iPod to 107.9. Viva Nick! The noise can be mind numbing, not to mention the snot rockets he blows and wipes across the flat screen TV. Today is “World Autism Awareness Day”. Believe me I am well aware of it.

Day four of spring break:

It’s cold and rainy, but at least he slept in until 7:30am. Nick watched movies with his respite worker while I went in to teach stability ball and step classes. He was even sillier today, must be the cabin fever. I’ll let the pictures speak for themselves.

Silly guy 🙂 …..

IMG02

His favorite dumping spot, behind the flat screen TV.  Good news, I found my shoes….

IMG01

Poor Stuart Little…..

IMG01 (3)

Day five of spring break:

It’s my day off from teaching and thankfully Nick slept in until 9:00am so I was able to enjoy my first cup of coffee in peace.  He was pretty good today, with the exception of a few button pushes, blasting 107.9 and flicking the bathroom light on and off while I showered. It was cold and blustery so we bundled up and headed out to Taco Bell.

Nick loaded up with stims……

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He was so excited when we got there. Just one problem, the ice machine wasn’t working. Nick stood there pushing the ice button to no avail for several minutes. He wouldn’t budge. One thing about autism, any change in routine is a possible trigger to set him off.

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I finally got the attention of a worker who was able to fill up our cups with ice behind the counter. Meltdown, deflected….. whew!

Day six of spring break:

Hallelujah, Nick slept in until 10:00am! Thankfully he chose to watch a different movie…….

The other guys

I took him out to eat at Burger King. We usually go out later around 1:30pm to avoid the lunch crowds and curious stares. I couldn’t believe it, when we walked up to the drink station guess what? They were out of Sprite…. are you F’ing kidding me?

Nooooooooooooooo…….

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I asked Nick if he wanted Coke or Minute Maid Lemonade. He screamed and pinched his cheeks hard. We made it to the table but he wouldn’t eat.  He kept clutching and pulling at his cheeks.  Finally, he started to eat his fries but wouldn’t touch his drink. “Nick, want to drink your Coke?”   He let out a big yell. Another couple whipped their heads around staring at us. I smiled and said, “That’s autism, isn’t it nice?” After eating all his fries and chicken tenders he finally took a sip of his drink and let out a burp and a smile. Whew, meltdown avoided. This calls for some ice cream…..

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The sun came out and the temps were warming up close to 50 degrees, so we took a walk in the park.  It was a nice, peaceful ending to a long week.

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It’s not all noise, pranks and chaos with Nick. He does sugar coat things with his smile, hugs, kisses, snuggles and elbow bumps. I’ve come to appreciate his creativity and sense of humor that keeps me on my toes. Hope you enjoyed my installments of autism awareness, Nick style. That’s what is in my noggin this week.

~Teresa

 

 

 

 

 

 

Posted in Autism, Down syndrome

Spring Break

It’s spring break for Nick so I am taking this week off from posting.  Tune in next week for stories and information. Thank you for reading and sharing Nick’s world!

~Teresa 🙂

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