Thursday, July 7, 2011

The Cuter Half has his opinion.

This is the cuter half writing. Normally my wife would be doing this, but I have been compelled by recent comments by neuro-typical people with no experience dealing with the daily struggles of parenting an Autistic child to post a “blog” on my opinion; I hope this meets your expectations. 

I have found it interesting that my wife’s recent posts have sparked such uproar from people. In my experience those in the wrong, much like the Boy, scream the loudest. Whenever he has made a mistake, as ASPIEs often do, he screams how it was not his fault. “I did not, it’s not my fault, You made me, I was tempted…”. This all stems from the “ASPIE extremes” as I call them. There is black, there is white and there is no gray, and when anyone is very wrong in their actions they tend to act the same. I am wrong so I will deflect and distract and yell about this so you forget about that.

Let me say MOST neuro-typicals have no idea how different our perception of the world is from theirs.  Have they ever once been told to “Keep that retard of yours away from my kid”?  We have been and that was by a “neighbor.”  We have also been told “No, we will not come over and have our kids “catch” what yours has”; after people realize what child’s parents asked them over for dinner.  So when extended family must insist firmly that our home is not acceptable for a planned family party, we do revert back to our prior experiences, experiences MANY neuro-typicals would never comprehend.  We are thankful when people come over to our home and do our best to offer them what ever hospitality we can.  Unfortunately, the Boy becomes his “Labrador Retriever” self; not because he means to, just because a friend, family member, or any person coming over is a rare treat, and he gets excited.  Yes, our home is small and the Boy gets very animated when people come over, and we do entertain outdoors with the doors locked so that if needed we can get the Boy into a familiar, safe, non-stimulating environment if we need to.  The neuro-typicals with their son’s best friend living next door and having to compare Christmas lists with the other mom as the two only need one copy of the video game as they share everything with each other, would never understand the abject isolation we face being the parents of “that” child.  We can list on both hands the number of non-relative kids who the Boy has had to the house.  Most neuro-typicals have no idea of our isolation, and do not care to.  Otherwise they would know how hurtful they have been, a polite and kindly worded (albeit lie) of “We cannot be outdoors due to allergies” or “We cannot be indoors because of allergies to your cats”. That would be understandable: a firm no, well, to us that is hackle raising insulting.  

It appears that the posts making the biggest impact stem from a recent family party. Having surveyed numerous people, the results are an over whelming “You do not video tape an ASPIE making a fool of themselves, it is wrong.” Especially when he is 16 and you are significantly older and encouraging the behavior. Now if you are 14 to 18 and encouraging bad behavior to catch another 14-18 year old on tape fine; kids will be kids. The issue comes in when it is a grown adult(s) over the legal age to drink encouraging their handicapped minor relative to misbehave solely for their own amusement. Any videotaping of a handicapped child/teenager/young adult by an adult for the sole intention of posting it later is wrong. Perhaps we should post on you-tube the embarrassing photos and videos we have of them and their parents? (FYI- we don't have any so don't worry). Our ASPIE kids have enough stigmas associated with them they do not need help from “grown” adults. The insulted parties to the posts need to replace the image of the Boy and insert the image of a severely handicapped child being made to consume large quantities of cake while people laugh at him. Not such a funny sight is it?

I often wish the Boy was in a wheel chair, or had some outward sign from far away that says “Hey, you have to be careful with me.” But he does not, and in his Abercrombie and Aeropostale he looks just like everyone else. Yes the boy has improved socially to the point he can blend in….almost. It is like the heavy red lip stick that did not quite make it onto an elderly lady’s lips; you smile and pretend it does not stick out; it’s the same with our son. From a distance you would never know, and up close you politely ignore… well you should politely ignore, most people do not.

The minute a camera came out, the humor was gone. The Boy does not have the social ability to defend himself, or the sense to stop. And it is sad those who were involved have chosen to deflect and distract and not view the situation from our point of view; our son is handicapped, and as soon as a video camera appeared- the fun was over. No different than the kid at school who gave him 5 quarters for his 5 dollar bill so he could buy a pop from the machine. 5 for 5 what ASPIE would not fall for that con? Stuff your face with cake you will be on You Tube and become famous.

Yes, our standards and expectations are high: of the Boy and of society. It saddens me when parents of neuro-typical children accept less than perfection from the kids who can do anything and be successful without trying very hard. Again, you do not video tape a handicapped child/teenager/young adult doing something you think is funny. If it were acceptable “America’s Funniest Videos” would be won every year by the handicapped. The best example I can think of his a teacher who came right out and laughed telling me “The Boy runs like "Forrest Gump". I get a good laugh out of that each day”. Needless to say… that teacher is lucky the Boy’s parents are so… let’s say, "understanding".

The neuro-typicals have no idea the level of structure we must incorporate into our lives. 
Oh the joy to have the luxury of saying we leave next week, later today or even tomorrow.  To the neuro-typical these are acceptable answers, to us it is a maddening nightmare, interrupting a closely kept routine, as we are expected to be available to join them.  (“But when tomorrow, Dad? What time today, Dad?  I need to plan, I need to pack, I need my travel guides so we can go to a “Diners, Drive-In or Dive” on the way!”)  We wake at our house promptly at 6:43 and bed time is 10:13, we have to plan our days and trips ahead and must inform the Boy, regarding the minutest details, or things do not go well.  Oh the joy we would have if we could drop everything and plan a spur of the moment dinner.  But we can not and a phone call at 7:05pm saying we are leaving now for dinner meet us in 20 minutes is not going to be meet with a rousing “See you there.” 

Why is it so hard for neuro-typicals to say “We arrive Monday at 6pm, we would like to meet you for dinner at 7:30pm. On Tuesday we will be going down-town for lunch, please join us at 7pm for dinner.  Wednesday we will be blowing bubbles and doing jumping jacks with trained Chinese Circus Bears, and we would prefer you not to come along, as it is a family day. Does all of this work for you?  If not, what time does work?’  Instead we are told vague answers. Pretty much we are left to assume in the neuro-typical world people just wake up and say “Gosh, today I want to go to Paris” and they pack and leave.  We have been told wanting more details on an upcoming family event, than “This Christmas” is unreasonable, venues and specifics (such as a date) will be worked out later.  Well in our world that does not work.  Does it in yours?  Our vacation dates for 2012 have already been decided. 

 By the way our plane leaves at 5:30 or is it 8:30? Oh I don’t know just plan on taking me tomorrow… sometime…right now I want cake, ...no better yet ZaxBys Chicken, hop in the car kids we are off to Arkansas to visit family and have some ZaxBy’s chicken hope we can get some Chick-Fil-A on the way as well!  Oh don’t call, I am sure they will be free to join us, what else could they possibly be doing on a Wednesday night in July or is this June?  Oh, it is August?  Hey, I kind of like the new neuro-typical me; hang on we are changing plans if it is August it is Rib-Fest, Naperville here we come!