Everyone is a little Autistic…

Previously Published /2.2013

Posting again now for my Holland.   Everyone is a little Autistic…

April was Autism Awareness month and I was asked to participate in a Diversity presentation in Fort Worth Texas in May that included some Autism Awareness and how Autism impacts my life, and my daughters life, and the life of our family day-to-day and how we cope.  The event was to be held for my company and all of my peers and our partners and management from across the country.  That’s a lot of people.  There was a definite “Yikes” factor at work for me this time.  I have spoken to large groups before but in my business and among my peers I have never been asked to speak about how a topic impacts me and my family on a personal level.

But, ‘Yikes” factor aside, I am an Autism Advocate for parents and kids and will speak to anyone that will listen about my life and my daughters life with autism, cards on the table man.  Ask me anything and I’ll give you more information than you every wanted in the first place.  My middle name is “TMI” and that is fine by me.   The presentation went very well and I had many people want to talk afterwards about their son or daughter, or a grandchild or niece or nephew or friend.. The fact is that when I spoke the word Autism I instantly made a connection with over half of the audience.  But if I had more time, I would have had the other half no problem…because everyone is a little Autistic.

First, don’t panic, being Autistic, a little or a lot, is not even close to the end of the world.   In fact, didn’t we all survive the end of the Mayan Calendar world?  It was just like the day before the end of the world wasn’t it?  So we can learn a valuable lesson from the Mayan’s;   a)  Maybe what feels like the end of your world, is just another beginning, remember that today, the present, is a gift, and 2)  Maybe the Mayans are just like regular people and just ran out of space on that calendar. How would they know how serious everyone would take it.  Mountain and molehill…who knows?

In fact, the older I get the less I see a need to actually panic.  I find that when I catch myself feeling panicky (if that’s even a word)  I feel silly.  My inside my head voice says “Oh for heaven’s sake, stop this.  Calm your damn self down and carry on with what you need to do to address the situation within the limits of your control.”   Unfortunately, many times it takes longer than I would hope to catch myself and usually do or say at least one very silly or hysterical thing before the “smart cookie” side of my brain kicks in.   Exception – if I am being chased by a big dog or other large animal, wait I take that back because if a chicken or a goose was chasing me, that would merit valid panic. See everybody has a thing.

This is why we are all a little Autistic.  ANXIETY!  With children (and adults) who are diagnosed with Autism you may not find a single symptom the same in every case.  There are many commonalities you might see, but way more differences. Just like people without Autism.  We all experience anxiety.  The differences seem to be to be what causes an individual’s anxiety level to rise (big dog, aggressive chicken) and how they are able to cope with that anxiety…or not.  (Run away willy nilly!)

For example, why do you think so many stores and designers are making shirts and tops and blouses that are tag less?   Do you think it’s because a good portion of Autistic folks cannot cope with a tag in their shirt scratching or even touching the back of their neck?  While this is true, of course not!  Although Holland, my daughter will cut the entire piece of the shirt with the tag out of the back with those nubby school scissors leaving a big scraggy hole or ‘notch’ in the shirt to alleviate that particular anxiety.
But the point is, almost everyone in the world gets bugged by tags in the back of their shirt!  It causes them a certain level of anxiety they don’t like.  The difference between a little Autistic and diagnosed Autism (among other things) is how high that level of anxiety goes (I cannot think about or focus on anything else because this tag in my shirt is making me feel crazy, literally) and how well we are able to cope or progress forward with the task or situation at hand in spite of our anxiety.  (I am cutting up my stupid shirt while my teacher is in the rest room.)

My daughter Holland has Autism.  She hates tights. She has hated them since she was a baby.  She would cry and pull on the toes of the tights trying to get them off for the duration of church, or the wedding or funeral etc.  At about two years old I was pleased to realize that Holland had inherited at least part of  the ‘smart cookie’ gene when she just started snagging her tights with her finger until she could rip a ginormous hole in them and step right out of her tights and carry on!   So, it’s been leggings ever since.   But her ability to find a way to keep on moving, however destructive (holey shirts and ruined tights) told me that she could learn to cope and that for her in her life, we can find a way.
Now frankly, tights and tags have been the least of our issues as most parents, or folks who work with Autistic kids would agree.  But the principle is the same. Unlike many disabilities, Autism does discriminate.  Some children are super high functioning and can respond, adapt and learn quite quickly.  Others have more severe delays and their anxieties can stay locked inside making it nearly impossible for them to speak, which makes learning and coping extremely difficult and challenging.  But many of our Autistic brothers and sisters are just somewhere in between. Trying to live in a very socially dominated world that no matter how high functioning, they simply don’t understand.  None of that comes naturally and learning it and practicing it, and I mean accepted and expected social behavior, takes a lot of work and effort for these kids AND it makes their level of anxiety shoot the moon.

Remember how you felt the very first day of Jr High School?  Or the first day of any new school?  Imagine feeling that way every day of your life about several things during those days.  Now imagine not being able to articulate why you are feeling that way to anyone, even your Mom.  How frustrating would that be for you?  If you think “a lot frustrating”  you may start to understand Autism.

So here is what I can tell you now, what I have learned so far in my journey called life, that just so happens to include Autism.  I cannot stand ear buds, they hurt and so I prefer head phones.  I use a Blackberry Bold because I cannot tolerate the touch screen key pad, it makes me…yes…it makes me mad to use it so I don’t.  I will not eat zucchini in anything but zucchini bread.  Just thinking about it makes me have a dry heave.  In fact, I have avoided the squash family altogether until just last year ( I am 47) and now I only eat spaghetti squash on my own terms.  I refuse to shave my husbands back, neck or chest no matter how many times he has asked me in 25 years of marriage.  I think it’s gross and just thinking about it makes me have a dry heave.  I could go on and on.  Because we all have a thing…or three.

But I can identify these things and find my way around them in my world and carry on with no problem except a hairy husband.  (Still gross.)  Most of us do this every day.  That is the difference between being a little Autistic and having Autism.

Last story.  One April day before her 5th birthday, Holland and I were in TJ Maxx in the check out line.  Holland had found some Polly Pockets she wanted and I agreed to buy.  While in line she was pretending with the dolls and talking to herself and all of a sudden she became aware that some people in the line had turned and were looking at her.  She stopped and came close to me and said  “Mom, am I weird?”  I prayed a little prayer and then said “Little bird, everyone is a little weird.”  AND THEN, I kid you not, this kid came up to stand behind us in the check out line.  I glanced around and saw him, who was probably 6 or 7, wearing Woody pajamas and a full cowl Batman mask and his snow boots.  Holland turned and was face to…well…mask with this Lone Dark Knight Ranger and they just looked at each other for probably a full minute, saying nothing.  Holland’s face was serious…for Woody the Batman I can’t say.  Then slowly, Holland turned  back around and reached up to whisper to me.  “Yeah Mom, everyone is a little weird huh?”  I said “See I told you.” and we smiled at each other and went to the check out.

Whoever dares say that God doesn’t answer our prayers…or have a sense of humor…is 100% wrong.  I thanked Him for that little miracle in a mask and snow boots who appeared at just the right moment all the way home.

Every once in a while it really does go your way, if you look at it from the right perspective.

Mom and Holland- 2015

Mom and Holland- 2015

http://planbdsb.blogspot.com/2013/07/plan-b-everyone-is-little-autistic.html?m=1

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Previously Published/ 2.2014

Tuesday, February 11, 2014

Don’t You Forget About Me….

Hello Friends!

I am sharing an article I recently wrote for my company’s January news letter.  I am on the Diversity & Inclusion Council and so this is my personal story about how this issue impacts my life.  If you want to, please share your story.  I received so many emails from all across the country after my article was published, and that is just within my company.  Trust me, you are not alone.

Don’t You Forget About Me….

As the holidays come to a close, we put away the decorations that remind us of such a happy time of year, and say goodbye to loved ones, I often get a little sad. Mostly because it is so much work, and I live in Utah where January and February are very cold and snowy and the skies are gray.

This year was even more emotional for my siblings and me. My dad is suffering from severe, degenerative Dementia, or Alzheimer’s disease. It has been just over three years. My mother is the primary caregiver, but in the last year, her physical and emotional health has degenerated from the stress of taking care of my dad. 

It is estimated that as many as 5.1 million Americans may have some form of Dementia or Alzheimer’s disease. And that number increases as the population ages. Alzheimer’s is not a part of the normal aging process, but the risk of developing the illness increases with advanced age.

My dad is 77. In June 2007, he and my mom moved to Barbados to serve on a religious Mormon mission. He had just retired after 46 years working at Hill Air force Base managing the online Military Defense Department. He had also just retired from the Army National Guard as a Full Bird Colonel. My dad was a planner. He had made good investments, their home was paid off, and he had two pensions coming in plus social security. My mother had worked teaching school for over 30 years, and she retired before they went and had her pension and Social Security coming. They were thrilled to be moving to the Caribbean for the next three years. Frankly, so were we!

Our first trip down to the island was for Thanksgiving in 2008, and they were thriving among the very diverse environment on the island of Barbados and loved the people and their way of life. My dad was becoming quite the local photographer, and my mother was speaking a combined form of English and Rastafarian; she still does. “We be comin’ for suppa ‘round say 6pm. Now you all be havin’ a bless-ed Sabbath,” my 72-year-old mother will say in a voicemail. She loves those people with all her heart.

We visited again in April 2009, falling more in love with Barbados with every trip. Their time on the island was coming to an end, and they had mixed feelings about coming home. We decided as a family to take one last trip to the island in April 2010 before they came back to Utah in June 2010. However, when we got there, things were very different. My Dad was very quiet. While he had always been quiet with three daughters yapping away all the time, this was different. He had always driven when we were on the island, but during this trip, he got us hopelessly lost several times. My mom’s left knee was now bone on bone and would have to be replaced when she returned home, so she was walking with a cane. I watched as my dad got out of the car, shut his door, and walked right into the restaurant, church, or wherever we were and let my mom struggle to get out; something did not feel right.

When they returned home at the end of June, it was worse. He could not find the bank or the grocery store or any of our homes. He could not drive anymore. Within the last three years, my dad has rarely recognized friends and neighbors. He knows I am his daughter – but not which one. I have a twin sister, a younger sister, and we all look similar. When I see him, I just say, “Hi, Dad!  It’s DeeAnn!”

I’m the only sibling who still wears glasses, and I keep wearing them because every once in a while, my dad will recognize me by my name because of them. In fact, this past Christmas Day my Dad said, “Merry Christmas, DeeAnn! When did you start wearing glasses?” I just said, “Merry Christmas, dad. I love you!” and took a moment to compose myself. I often get emotional after receiving a very special gift. I hold it close to my heart as a memory because I really do not know if I will ever get another one.

Alzheimer’s is cruel. Most of us, just like my dad, work all our lives for our families. My dad worked for 45 years. He took the van pool to Hill AFB every morning at 5 a.m. for work, was gone one weekend a month and two weeks in the summer, and did four years of active duty for the military so he and my mom could travel and enjoy their home, family, and grandchildren debt-free after retiring.

My dad took us to summer camp with him to California each year, and we spent two weeks on the beach and went to Disneyland and Sea World. We were with the other army moms and our summer “army brat” friends. We stayed in family housing and went to the chow line to eat and loved every minute of it. All you take with you are your memories – unless you have Alzheimer’s.

I took a trip to New York last year and went to Ground Zero. I brought my dad a book about the tragedy and the memorial reconstruction. He must have asked me 10 times as we looked through the book, “Who did this?” “Why did they do this?” and “Where did this happen?” He remembers nothing about 9/11. Remember, he’s a retired Full Bird Colonel from the Army.

Now, my dad rarely speaks and barely leaves his home. Crowds make him feel anxious, chaotic, and afraid. He is frail and thin and does not remember what it is like to feel hungry or thirsty. He does not remember what regular items (toothbrush, razor, soap, or shampoo) are for. He also needs a home health care nurse, which my mother takes to mean that she’s somehow a ‘failure’ as a caretaker. That is the rock and the hard place my sisters, brother, and I are facing right now.

I know I am not alone. I am certain there are many team members going through similar life experiences. If so, reach out. Hey, you play the cards you are dealt, but that does not mean I could not use a tip or two.

Finally, keeping a sense of humor is crucial. My dad wears a patch for his memory. When I take care of him, he always asks why he needs that patch. I tell him that it’s to keep him from smoking. He says, “I’ve never smoked in day in my life!” and I say, “Good thing you wear the patch!” He laughs, every single time.  I Love You Dad   Facebook-20150208-015845  Strong Family in Barbados. Nov. 2008

                                               

Alzheimer’s / Dementia Foundation of America                                       http://www.alzfdn.org/AFAServices/careconnection.html

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