Oh The Health With It!

I am awakened from a deep sleep by the familiar sounds of intense vocal stimming, the click of the hallway light being flicked on and off repeatedly and the harsh strumming on the wooden window blinds.   “Shit it is only 4 am,” I say to myself. “So much for extra sleep on the weekend.” I so want to throw the pillow over my head, turn on my side and ignore it all.

I head upstairs with brain fog and sleepy eyes to start the same routine I have been doing daily for nearly twenty years. Thankfully I am greeted by a smile; today is going to be a good day. Other mornings it is evident from the minute of waking that things are not right in his world and no matter what we do, nothing will appease him. No amount of snacks, videos or car rides will make him happy and we will have no idea why or what is causing the unhappiness.

The routine is the same, I could do it in my sleep (which is good because some days I am barely awake). First step is the Bathroom, and if we are lucky back to his bed for another hour or so of snuggling. Once he is up he is ready for breakfast number one. Breakfast one typically consists of pancakes or scrambled eggs, his juice and morning medications. If he is up too early, the meds have to wait. Once breakfast is done he is ready for car ride one. Mike and Zach go every Saturday and Sunday morning to get a bagel or breakfast sandwich and coffee then return home for breakfast number two. By now it is eight or nine am and the remainder of the morning is spent watching videos, and roaming the kitchen. Zach has a pattern in the kitchen: Open the fridge and freezer, open the cup cupboard and take out a cup, walk over and try the pantry, then he checks to see if he can get out the slider door into the backyard. This pattern or being upstairs then roaming the kitchen is repeated over and over and over.

Soon it is lunch time and time for car-ride number two. Then the afternoon is spent on the upstairs/kitchen pattern, car ride three, dinner, car ride four, more upstairs/kitchen roaming all interspersed with trying to get into the bathroom to turn on the water or grab someone’s toothbrush, rattling the blinds or jumping at himself in the mirror or with grabbing shoes and keys for yet another car ride with no particular destination in mind.

Finally it is shower, snack and bedtime and if all goes well getting him to sleep takes no longer than thirty minutes. The time is now 9:30 (hopefully). Tomorrow will be a repeat performance, as will the next day and the next and the next. My life is Groundhog Day.

While reading about Caregiver Stress and Burnout I came across the following from an article on the webpage: http://www.helpguide.org/articles/stress/caregiving-stress-and-burnout.htm

“The demands of caregiving can be overwhelming, especially if you feel you have little control over the situation or you’re in over your head. If the stress of caregiving is left unchecked, it can take a toll on your health, relationships, and state of mind—eventually leading to burnout. When you’re burned out, it’s tough to do anything, let alone look after someone else. That’s why making time to rest, relax, and recharge isn’t a luxury—it’s a necessity.”

Oh I know the above statement is true, and I am lucky to have a partner to help with the daily duties. When Mike is on a business trip I definitely notice the difference! Thankfully, I have a wonderful caregiver that has given us many opportunities for a night out or a break. Before we had Beth, we were at the breaking point. The sleep deprivation and Zach’s self- injurious behavior and mood swings had made any semblance of a “normal life” seem so far out of reach. Every day I think of my friends that are single parents with awe and admiration. This is tough with a partner let alone doing it on your own. But to say making time to rest, relax and recharge is most times easier said than done, many, many times parents are not afforded that “necessity”

I am the first to admit I worry far more about everyone else in my family…including the dog. Are they eating right? Feeling OK? Getting enough exercise? Are they happy? But when it comes to me I do not do all I should to make sure that I am healthy and happy. I am way overdue for the gynecologist, dermatologist, endocrinologist, a physical, a mammogram, and God help me now that I am 50 a baseline colonoscopy. Want to know my reasoning for avoiding those appointments? I need to lose weight first….

I do not blame Zach or Ring 22 syndrome or autism for my lack of healthy habits, overeating as a way to deal with stress or anxiety has been my mode of operation for many years. Being raised in a dysfunctional family and some other life events that happened during that time fostered the bad habits that I still have in adulthood.

Now obviously the stress of being a parent/caregiver of a child with special needs has not helped my anxiety or stress level. Everything you read talks about the importance of sleep and healthy eating and exercise in both physical and mental health. Some days I am just too exhausted and drained to even consider hitting the treadmill or doing an exercise video. When a day starts at 4 am and ends at 9:30 pm, I just want to sit down with a pint of Ben and Jerry’s and watch mindless television.

Here are the signs of caregiver stress and burnout listed in the article:

·     Anxiety, depression, irritability

·     Feeling tired and run down

·     Difficulty sleeping

·     Overreacting to minor nuisances

·     New or worsening health problems

·     Trouble concentrating

·     Feeling increasingly resentful

·     Drinking, smoking, or eating more

·     Neglecting responsibilities

·     Cutting back on leisure activities

  • You have much less energy than you once had
  • It seems like you catch every cold or flu that’s going around
  • You’re constantly exhausted, even after sleeping or taking a break
  • You neglect your own needs, either because you’re too busy or you don’t care anymore
  • Your life revolves around caregiving, but it gives you little satisfaction
  • You have trouble relaxing, even when help is available
  • You’re increasingly impatient and irritable with the person you’re caring for
  • You feel helpless and hopeless

One thing that helps me from feeling helpless and hopeless and that helps me from feeling increasingly impatient and irritable is talking to friends. My friends both in real life and online help bring me up when I am feeling down. It also helps to know that I can help someone else too through a joke or message of support.

Laughter truly is the best medicine!

I may not be able to avoid caregiver stress but I do my best to avoid caregiver burnout by spending time with friends and by writing my blog. Monkey Business has been the best therapy I never had to pay for! I am working on taking better care of my physical and mental health, it is one of my goals for 2015. I am learning to take things one day at a time and not to beat myself up if I have an off day. Caregiver stress and burnout is a very real battle, it doesn’t matter what “functioning level” your child is, when your whole life is about taking care of someone else and there is no end in sight for that care you need to take care of yourself too! So I guess I better get scheduling…looks like it’s going to be a busy year catching up!



The Questions!

1.  What is your most prized Possession?

I would not call it a possession but what I hold very near and dear to my heart and protect fiercely is my family.  After growing up in in a very dysfunctional family it was always my dream to have a “Typical All-American, Leave it to Beaver” family.  Well, we are FAR from typical but I love my little family and nobody better mess with it! IMG_2397

2.  How do you unwind after a long day?

HMM…some folks say I do not know how to unwind…..Having a full time job and a young adult on the autism spectrum don’t always make for easy unwinding BUT if given the opportunity I like to get some down time with my new found love of writing, facebooking  and some highly educational television such as The Walking Dead 😉


3.  What is one song that has followed you throughout your whole life?

The song that always comes to mind when i think of my life is Chumbawamba-Tubthumping…I get knocked down but I get up again..nothings gonna keep me down!

3.  If you could give one piece of advice to new bloggers in your field, what would it be?

Don’t over think it.  Write from the heart, be open and honest.  Keep it Real!

5. Now that you’re famous, we need a quote from you.

As my daughter is getting ready to graduate college and go on her life adventures and as we look toward the future of what life will look like for our son as an adult on the autism spectrum..I keep telling myself this:


And the Award Goes To……..

I am humbled and honored to be nominated for an “Inspirational Blogger Award” from my dear friend at Just a minutemy cape is in the dryer.  To be nominated by someone you yourself consider to be so inspirational, motivational and an overall badass mother, friend and human being is far better than any golden trophy I could receive.

I accept this award on behalf of all the bloggers who took a chance and decided to tell their stories.  I never would have thought that when I began to dabble with telling our story on my personal facebook page for Autism Awareness Month almost two years ago that I would now be writing and telling my story on it’s own page and blog site.

My facebook page is relatively small considering that other autism bloggers have several thousand followers and my blog site here on wordpress is definitely a work in progress.  But I did not start the page or blog with any expectations, I started it because when I shared my stories on my personal page folks asked for more, and I realized that the more I wrote the better I felt.  It was a cathartic release of so many feelings that I had been holding back for so many years.  When people responded to my writing with “I know exactly how you feel”, or “Thank you for keeping it real!”  “Thank you for making me LOL!” or “Wow I cried at that because it was so touching.” it felt amazing.  To think that I touched one person with a funny anecdote or that one person shed a tear because they could relate to what I was saying was such an amazing gift.  In the process I also realized that there was an entire world of bloggers..first I connected to folks like myself; parents of children with autism or other differing abilities, folks from all walks of life that were going through some of the same things I was going through….the good, the beautiful, the bad, the ugly and the monkey business.  Now I have begun to  connect with writers….not just folks who write about having children with differing abilities, but of life events, tragedies and triumphs, sexy sassy writers, and some of the most hilarious comedic writers yet to be discovered. I am in the midst of  folks who have been published on all kinds of sites, in all kinds of magazines and some who have written or been featured in books.  NOW THAT IS INSPIRATIONAL.  That is what makes me want to continue to write and to make more time for my writing.

I write for others but I mostly write for myself.  I see so many  young families starting out on their autism journeys with their children and now that my son is a young adult I find myself looking back at our roller coaster ride and coming to the realization that everything truly happens for a reason.  Although I despise what autism and ring 22 syndrome has robbed from my son and my family I can’t deny the blessings and gifts it has brought our way.  I would not be the person, wife, mother, teacher or writer I am today if I had never been on this journey.  Not gonna lie I probably would never choose this path if the fork in the road took us to Italy rather than Holland (refer to http://www.our-kids.org/archives/Holland.html if you don’t know what I am talking about 🙂 but I will continue to tip-toe thorough the tulips and see what adventures are yet to come my way.

As we face some of the toughest decisions yet in regards to our son and what happens next for adult life I hope I can continue to inspire others, to touch others through tears and giggles and that I can somehow forge a path so that others can find peace and joy and know that even though it isn’t always Unicorns and Rainbows it doesn’t have to be all doom and gloom either.

Thanks again for being here and letting me enjoy this new-found creative outlet.  And most of all thanks for caring about Zach and the rest of the family!!!!


2015 A Time for Shiny New Beginnings

After 50 years of holding on to dysfunction and grief, 2015 is going to be the year to release the chains.  I am not talking about autism, or Ring Twenty Two Syndrome or anything regarding my immediate family.  I am talking about chains that have been weighing me down for many years.

I am not sure why it has been so difficult to let go and say goodbye to things and individuals in my life that bring it no quality and no value.  I am worth so much more than that, my family is worth so much more than that,  To waste even another moment crying or worrying over these things and individuals I can’t control robs me of the happiness I deserve.

I am not saying it will be easy, old habits are so hard to break.  But today as these same chains try to bind me up and bring me down I am saying NO MORE.  I am moving away from those toxic individuals that do not care about anyone but themselves and I am surrounding myself with positive, caring people that bring joy to those around them.  Wishing you the brightest and best year ever!