Wednesday, April 27, 2016

A Field Trip Adventure

This year, 2016, is flying by! With April (Autism Awareness Month) almost over and coming into the month of May with summer in tow, as a blink of any eye; the winter holidays will be here. My motto of taking each minute, each day and treating as if tomorrow may not be here is super right on.

Our schedules here in our family keeps us coming and going. Someone always has something to do. Yes, I will say there are not enough hours in the day but I manage to complete most everything. The Gift of Time is something we can never get back and the one gift in life that is so valuable. Over the years, I have wasted time frivolously but in the uphill ride along with many years of growth, I have come to figure out my own obsessions, my own compulsive way of doing things. Basically to let things slide.  Not to stress when something may not get done, fret over a situation beyond my control or when a little is having a meltdown. There is plenty of other things to worry about about or for the matter laugh about. Do not get me wrong, I still have anxiety or worry when we are out in public but it is my worry and my own issue that sometimes needs to be put in check. Living in a society when children or teenagers have situations especially in public, one would rather judge on the scenario then truly know why or what is happening. This is where my anxiety is directed.

Leading to our last week of field trips, well first let me define what field trips mean in our home:

Field Trip - Any outing of any kind with the family, friends, one or all little's or just mom or dad. Hence this could be going to the post office, grocery store, amusement park, friends house, city park, a walk around the block and/or eating out. 
Get this gist!!!

Being my organized, compulsive self, I pretty much know how much time I have before the over-stimulation hits the all time high or the signs for we need to get home, set in. Therefore in our last week adventures, I took all the little's on field trips. One of many landing us at the grocery store. After ten minutes of scoping the parking for a large shopping cart, buckling everyone in and laying some minor ground rules, we set off into the store, singing twinkle twinkle little star. Yes, we sing a lot in public, we do other redirection antics but this day we sang over and over while our shopping cart filled up. The store field trip was going great, had a few comments of how great the children were doing, comments on the little's singing and some other comments of how much my hands must be full. Not much phases me, I have heard most everything when I have all the children (big and little). I always smile and comment back, with a smile and a little comment of my plate is a platter and how blessed we are.

With all that, we were on a mission. Groceries for home and to leave the store as the same way we came in. Quietly singing. Well, towards the end, the signs started coming. I knew if I did not cut my time and finish there was a possibility of some kind of something that could happen with one of them or that matter all of them. So, we played a game of I-Spy, finished the shopping in record time and all seemed to be laughing, talking, singing and I for that matter was enjoying the moments with my children.

The last leg, we hit the check out line and it just took one small trigger of a patron making a comment and touching my little's curly hair. For one to be so bold but a small invasion of personal space was it. The meltdown started, after double checking nobody was hurt, I continued with checking out while not engaging in the meltdown but that did not stop other patrons looking our way, commenting on the crying or the usage of repetitive words. A couple of people even left our line and not because it was not moving, they left because of the active meltdown of my little. Though I am use to it, I still respect others around me. There have been times I have left the store and all our groceries because truly what is important is the well-being of my children. However, I will not give in to the meltdown either as that teaches my children nothing. As we proceeded to finish, the cashier commented about my little crying and how tired he must be, I quickly commented back, he is Autistic. She quickly along with the one of the patrons who left our line and the person behind us; all changed their tune. They no longer saw my little as child who was crying or speaking over and over because he may of not gotten what he wanted, they all made comments that ranged, he really is doing great with the grocery shopping, do you need help or anything I can do. I politely said we are good, I thanked them for their offerings but it was hard. With the comments made and the looks I received only mere minutes early, I needed help now because of one word, people judge without knowing anything.

None of this surprises me, I even have these awesome cards given to me but only had one left, I would have handed each person a card as it talks about having an autistic child. I have to admit the cards come in handy. As handy as the cards are, I feel sorry for people who are uneducated of special needs. Those who think everyone fits into a box. I do not expect everyone to know about Autism, Epilepsy or Sensory Processing Disorder, but I guess I do expect people to be aware that not all people fit into one area of life. We, my family, live in and out of the lines of our boxes.  Our box is not perfect and many times we cannot even stay contained. My frustration lies when people make assumptions. I should have never had made an explanation but then again I should have never received the eye rolls, heard the comments regarding the crying and the stares but this experience is quite normal until, if any, an explanation is stated. We need to remember that we do not walk in someone else shoes, we have our own pair, those who choose to judge may not want to be judge themselves. Sometimes that is a hard lesson. In all of it, we all need to be kind, smile and most of all be positive of circumstances, things may not always appear as they are. GOD BLESS

“The most interesting people you’ll find are ones that don’t fit into your average cardboard box. They’ll make what they need, they’ll make their own boxes,” Dr. Temple Grandin

Until Next Time...Make It A Great Day!

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Saturday, April 16, 2016

What is Your Wake Up Call?

Even before I had my accident, I vowed to live each day to the fullest; meaning laugh, love and live like tomorrow may not come. Even then I did not do well with drama and did my best to stay clear of it. Eating came to eating pretty much what I wanted and that meant if craving a western bacon cheeseburger at 7:00am then that's what it meant or eating donuts throughout the day when Friday doughnut run came for the office. My downfall was working a lot and really never spending true quality time with my family. I do feel my accident was a wake up call for my life. A 360 degree turn.

Somethings have truly changed but some not so much. I love sweets, still to this day! I eat my share of gummy bears, black and red licorice, Hershey chocolate bars and drink plenty of Pepsi soda, oh and the occasional venti mocha frappuccino or seven pump grande mocha from Starbucks. I said then and I still say now, nobody cares what you will look like when you will be six feet under; therefore, why should you care what people think of you now. I do understand maintaining your health but there has to be a balance of healthy and happy. I am pretty sure counting calories and missing out on what you truly love is not happiness. I am not underweight nor I am overweight but I am happy with where I am. I do believe you have to balance all aspects of your life. Add in a disability and you are on a whole other plane but truly there has to be a balance of mind, body and spirit.

I would rather live a life worth living...
On January 29 2016 7:29pm - Keanu Reeves writes.. "My friend's mom has eaten healthy all her life. Never ever consumed alcohol or any "bad" food, exercised every day, very limber, very active, took all supplements suggested by her doctor, never went in the sun without sunscreen and when she did it was for as short a period as possible- so pretty much she protected her health with the utmost that anyone could. She is now 76 and has skin cancer, bone marrow cancer and extreme osteoporosis. 

My friend's father eats bacon on top of bacon, butter on top of butter, fat on top of fat, never and I mean never exercised, was out in the sun burnt to a crisp every summer, he basically took the approach to live life to his fullest and not as others suggest. He is 81 and the doctors says his health is that of a young person. 

People you cannot hide from your poison. It's out there and it will find you so in the words of my friend's still living mother: " if I would have known my life would end this way I would have lived it more to the fullest enjoying everything I was told not to!" 

None of us are getting out of here alive, so please stop treating yourself like an after thought. Eat the delicious food. Walk in the sunshine. Jump in the ocean. Say the truth that you’re carrying in your heart like hidden treasure. Be silly. Be kind. Be weird. There’s no time for anything else." If you send me anything, just make it cute and cuddly. It's been a rough week. Stupid cancer killing all the good 69 year olds.

Basically coming across that post, validated what I believe, what I feel, what I smile, what I laugh, what I cry and the family that I have been blessed with, it is so right on, words expressed before and after my accident. I know my accident put my life on a path that I never dreamed I would be on. I say this all the time. A life I never would take back nor look back, one I am so very thankful. Yes, I would I rather not have CRPS/RSD but my disability over all the pain has brought so much more to my family and myself. We cannot out eat, out run or out glamorize ourselves because in the end; we are end up all in the same place... 
in the ground or in ashes. 
There everyone is ALL the SAME.

If All Else, Be Happy for YOU, Not For Someone Else!

Until Next Time...Make It A Great Day!

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Saturday, April 9, 2016

We are All In Everyday but Yes Awareness is Key

April is Autism Awareness Month which we here in our family support tremendously as we have three on the spectrum but we also support the awareness months for Epilepsy, Cancer and any other month that includes special needs. However, I am writing as I find myself having a hard time with all the articles that have been coming across my social media new feeds that are written about what makes the families in need or what happened to them during these specific months of awareness.

I guess what I am trying to say is, our household does not change when the awareness month ends, my child or children's life does not change when the month changes the date to the first of the next month. So is thirty days of awareness for any special needs really fair? If I am sounding bitter, my apologies but if someone does not share in the autism diagnosis and they truly want to be educated in the subject they do not need an awareness month find the means. They do not need to wear a certain color on a certain designated day. They just need to learn, to research, to ask questions and they will find themselves wanting to know more.

Sadly, I have found that in my dealings with people who do not have a special needs child, most do not want to know more than they have too. This is not true for all but unless someone has to know the in's and out's of situation or the specifics; the information becomes too cumbersome. I wish I was wrong about that statement but I have not been proven wrong yet in thirteen years.

When our third child received his diagnosis of Autism thirteen years ago, I went into what I call stealth mode (researcher gone wild). I did not even know what the true meaning of autism was nor what really existed for autism. I felt like I was thrown in front of a pack of wolves running for my life while protecting my child. Now, fast-forward to the present, there is so much more available in terms of therapy, intervention, services, assistances, etc. and then some. However, I am still learning, growing and now having three children on the spectrum who all have different degrees of needs, I continue to advocate, ensure services are maintained, therapies of many are continued all the while we all grow on a daily basis working together (some good days and some not so good days). It takes a lot in ways of research, reading, asking questions, sometimes not taking no for an answer and many countless hours of trying to find the right resource. Basically, I am just saying I did not wait for some awareness month. I do understand there is more to the awareness month than just the bells and whistles; it is about raising for the cause. I just believe it should be an every day awareness for us just as my disability is for me. Whereas I do not change during CRPS awareness month and make different choices or wear a designated color. My disability is 365 days a year, I support it 24/7 just as I support my children's needs the same. I stress our awareness is daily when we laugh, cry, giggle, disagree and support one another, it is every minute, every day!

With Autism having the numbers and statistics as follows, does an awareness month have any justice only being thirty days? My belief the below numbers should be represented more than one awareness month!!!

Autism Occurs (as follows)
  • New Prevalence Numbers for 2014: 1 in 45 US Children have Autism. November 13, 2015
  • Revised Estimates of the Cost of the Autism Epidemic (July 2015)
  • New Rate of Autism 1 in 68 (March 2014)
  • The complete CDC report “Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2010” dated March 28, 2014
  • New Parent survey shows autism affects 1 in every 50 U.S. children. Will this new number be used by the CDC? (March 2013)
  • Pediatrics Reports— One in 91 Children in the United States Has Autism (October 2009)
  • CDC: One in 110 American Children has Autism (December 2009)
  • AUTISM OCCURRENCE: One in every 68 children in the US has autism (read CDC March 2014 Study). It is estimated that almost 2 million individuals in the U.S. has autism. (Note: This number and the following statistics below do NOT include: PDD, Asperger’s and other spectrum disorders.) These statistics are endorsed by the Centers for Disease Control and Prevention (CDC), American Academy of Pediatrics, and other federal agencies.
Nobody know what life will throw their way until it happens, everyone has inner strength in them that comes deep within. Sometimes easier to find, but that inner strength finds the way with advocating, finding the means, protecting your loved ones and fighting for what is right. Most importantly the love that shines through, whether it is in a first word heard, a goal met, a milestone succeeded, it is a journey that so often taken for granted where others celebrate with the most joy. To this be your child's voice....

“What does it mean to be an advocate?
In its broadest sense, advocacy means “any public action to support and recommend a cause, policy or practice.” That covers a lot of public actions, from displaying
 a bumper sticker to sounding off with a bullhorn. But whether the action is slapping something on the back of a car or speaking in front of millions, every act of advocacy involves making some kind of public statement, one that says, “I support this.” Advocacy is a communicative act. Advocacy is also a persuasive act. “I support this” is usually followed by another statement (sometimes only implied): “...and you should, too.” Advocacy not only means endorsing a cause or idea, but recommending, promoting, defending, or arguing for it.”
― John Capecci and Timothy Cage, Living Proof: Telling Your Story to Make a Difference

In the short of it...

Until Next Time...Make It A Great Day!

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