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.
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