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FEBRUARY 15, 2009 2:22PM

Tales From My Autistic Umbrella Part 3

Rate: 19 Flag

I like to call this chapter, "I see, therefore I am all knowing and shall place myself in the righteous seat of judgment and hand out all the advice that I, God's gift to parenthood, have to offer."

If I rolled my eyes any harder I might pull a dang muscle. The public's reaction to Autism Spectrum Disorders is uncivil, dirty, rotten, mean, judgmental, and even hateful. In eight years I have had ONE lady offer to help me get my kids from the car to the curb while I had my hands full, Noah chomping at the bit to run for it. Dashing through parking lots was his favorite sport.

Ah, where shall we begin? Wal-mart, I think. The whole family went grocery shopping at Super Wal-Mart and Noah wanted to mess with something that I cannot even remember now what it was, but it was harmful to him if we allowed it - like sticking his fingers in the wheels of the shopping cart. My husband finally hoisted him up onto his shoulders - out of harms way. Noah began to have a crazy screaming fit.

We were almost finished and we rushed through the last 2 aisles so we could get out of there quick. This man and his mama passed us and the grown man (in his 30's) angrily and loudly, to make sure we heard him, said, "Someone needs to shut that damned kid up! If he was MY kid, I'd take him out in the parking lot and rip his legs off."

I kid you not.

I stopped dead in my tracks, mouth agape and asked my husband if he heard that. He said no because of Noah being on his shoulders he couldn't hear much at all. I told him what the man said. Infuriated, my husband confronted the man. The man did not back down from his insult and desire to harm our 2 year old child, though his mother was clearly ashamed of him. My husband asked the man if he wanted to settle it outside. And just when I thought this scum bag couldn't sink any lower, he pulled out his cell phone and said, "I'll call the police." It seems this dude should be arrested based on the horrid comment he made and verbally expressing a desire to brutally harm a child.


Another time it was Christmas time and I took Noah to the mall - just me and him. I bought him a toy gum-ball machine and everything seemed to be going rather well until it was time to go home.

We were walking through Macy's where they had table after table decorated with long, red table cloths and then stacked high with boxed jewelry sets and watches.

When Noah, who was holding my free hand while I carried our Christmas goodies in the other, figured out we were heading for the exit door, snatched his hand away suddenly and literally dove on the ground right in front of my feet. It happened too fast for me to merely stop moving forward. It happened in mid stride. I began frantically searching for a place for my foot that was in mid stride to fall without stepping on my child. By the time I had found a place I was tripping and sailing headlong into one of the magnificently decorated tables.

Watches, earrings, necklaces went flying in every direction, my bags went flying, scattering our gifts across the men's underwear department. My purse went flying, scattering loose change, my cell phone, wallet and keys across ladies casuals. After my face plant I looked around to Noah to see what had caused him to fall. He was still in the exact same position (hands crossed over his head like a diver) and he was grinning at me.

I saw the cashiers staring at me and a woman in the checkout lane was staring at me as if I were the most bizarre creature she had ever seen. A sales attendant came out from behind a rack of clothing and began to tidy up the merchandise. No one offered to help me collect my things, no one asked if we were alright, they just stared.

I gathered our gifts and then the contents of my purse. Then, trying to be patient, calmly told Noah to stand up. He refused and went limp - too heavy for me to pick up when totally limp. I told him again to get up, strangers eyes still glued to me on every side. He refused. I lost my cool (wouldn't you?) and shouted, "Get Up!" Still he refused. Now mustering up all my strength, I pulled his 80lb, limp body upward and hoisted him into my arms and carried him through the rest of the store, stepping on cheap watches and costume jewelry in my wake, through the parking lot and to the car.

Then I noticed that woman from inside the store who was staring at me as if I were from Mars, was now in the parking lot, too, still staring in that very peculiar way. I struggled to get the car unlocked, and then forced Noah into his car seat - he did the stiff as a board thing so I could not sit him down, until I grabbed the gum-ball machine toy out of the bag and handed it to him. Then he settled down and let me buckle him in.

I stood up straight for a moment to catch my breath and when I did so, I saw that woman now standing at the front end of my car opposite side from me still staring in that peculiar and now CREEPY way. By now I was spent, I had nothing left within me to give explanations, an education or even excuses simple enough for this oddball, creepy woman to understand. So between gasps of breath I said to her, "Why don't you take a picture? It'll last longer." She just stared. I ducked back into the car to make sure all Noah's belts were in the proper place. Then when I stood up straight again, SHE WAS STILL THERE! WTF? What the hell did she want? I told her, "When you see a mother struggling with her child, offering assistance would be far better than staring and making sure I have seen you staring."

She replied with what she had been dying to say all along; that she had raised 2 children and had never seen anything like what she just witnessed. I said, "Oh really? How nice for you. I'll bet neither one of your kids had Autism, either."

She said, "You're the one who is retarded." With that she finally got in her car and left. I had to fight with all my will to not stomp on the gas in my Mustang and PLOW into her as she left the parking lot. I had so much adrenalin I could not release. I cried all the way home.

Let me say right here and right now under no uncertain terms - Autism does NOT equal retardation nor does it suggest it. My son was evaluated for retardation at the same time as the Autism evaluation and by the same group of doctors and he is not at all impaired in that way.

Another time (age 5) as I was searching the shelves for the right shampoo and Noah was having an annoying, but mild fit, the woman behind me said, "Giiirrrrrrl, if that was MY chile, I'd whoop that butt, mmmhmm!"

I started to ignore it like I usually do, pretend I didn't hear that priceless morsel of advice, but instead I turned to her and said, "Well he's not your child, he's mine and he has Autism. Would you still whip him if he was yours?" She looked embarrassed - but her embarrassment is NOTHING compared to the embarrassment of this family at the hands of the all knowing judges who believe that they see, therefore they know ALL.

Autism is invisible. The fact that I had 2 kids behaving perfectly while one writhed on the floor, and the rest of us sweated it out should have been a clue to the all knowing that something was not as it appeared. So I let this woman have it. "Maybe you should mind your own business. Maybe if you can't say something helpful, don't say anything at all. Keep your priceless nuggets of advice to yourself and only ration them out to those who ask you for them. Do you know what Autism is? Do you think it is physically visible? Do you think just because you momentarily observe a situation that you know all there is to know about it and that they are handling it wrong, in your opinion, and therefore need your nuggets of wisdom? Well that ain't the way it is, sista!" She gathered up her daughter and slunk away as quickly as she could walk.

The lake at age 2

There is a park near our home with a playground and a beach. There is also a dock that floats off the shore that is shaped like a big square with the center cut out. My youngest had just begun walking and I decided to take her and Noah out for a fun day at the playground.

Noah knew where we were as soon as I parked. He got out of the car before I could get his sister unbuckled and started walking towards the beach. I told him to wait - calmly for any hint of concern in my voice will encourage him to keep doing whatever I want him to stop doing.

Once little sister was out of the car and toddling along the sidewalk I called to Noah to slow down. He sped up. I told him to wait for us. He began to run. I yelled "STOP!" Although everyone around me stopped, Noah kept on running. I grabbed my daughter up and put her under my arm like a football and began running also. I was yelling to people as he approached them, "STOP HIM! TRIP HIM! KNOCK HIM DOWN! HELP! PLEASE!" But they all just looked dumb-struck and stepped aside to allow Noah to pass (in this place it was more than obvious he was headed for the water - it would not have taken rocket science to figure it out what was about to happen.)

My arm was aching from carrying my daughter,my legs were burning from being out of shape, and my lungs were screaming for air from asthma, but on I ran, faster now than before, because he was nearing the dock. When he turned onto the ramp that led out to the dock I felt as if I were going to puke. I knew if he reached the black water of the lake I would lose at least one, if not two of my children that day. To rescue Noah would be to leave my daughter sitting on the dock. She would not likely be still but try to follow me into the water - I'm sure while the idiots I just passed stood there staring.

Just as Noah reached the last step of solid ground before plummeting into the dark depths of the lake, I finally managed to get close enough to him to grab the back of his shirt and snatched him backward - probably harder than need be but the adrenalin was flowing and I could not control that part. Noah began to cry because it startled him when I snatched him backward, and he was mad that his plans had been thwarted. He stood up to give me hell then he stopped because I could not speak. I could not talk in coherent words. All I could do was yell-cry - a combination of a primal scream, speaking in tongues and the most heart wrenching soul crying that came from the very core of my being. I was shaking terribly and I held him and his sister for a long time before I attempted to move.

As we made our way to the car with Noah screaming bloody murder, me clearly shaken and the little one dutifully hanging onto my shirttail, believe it or not, we passed 3 families who laughed in our faces. They didn't speak English or else I would have unleashed my adrenalin upon them. - Enter Agoraphobia and how this single event changed MY life forever.

To be continued...

Nswing2020_1

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Rated. The moment I remember was hiking the Grand Canyon. We'd been told to drink, drink, drink water to not be dehydrated. I and my two brothers got ahead of my parents. My older brother has Autism. My older sister usually was the spokesperson, but she wasn't on this trip. So, my younger brother and I were hiking with Older Brother.

Half way up, he was muttering and moaning. This was pretty typical behavior, saying he's a bit tired of the hike. A group of very fit hikers past us. They took one look at OB and told YB and me that he was dehydrated. "The Man's raving. He's incoherent." I said nothing was wrong.

OB understood that they were saying he was crazy. His moaning increased. The other hikers desire to do something about this situation increased. YB and I struggled to get rid of them without upsetting OB.

Eventually, the hikers left. On their way up, they notified a ranger. We waited for our parents so when the ranger showed up, my father dealt with him.

I remember being caught between my brother's increasing humiliation and the anger of the hikers who were sure that we were complete idiots ignoring a case of dangerous dehydration.
I've been reading these posts, and I wanted to thank you for them. You are courageous. It also sounds to me like you're a damned good mother. I'm sorry it's been so difficult.
So sorry that the public is so damn stupid. Idiots.
So many people just walk away or just look. The lake story especially was chilling. I'm not sure how that mob mentality works but most folks can hide their humanity quite well in a group.
The comments and disapproval are excruciating. Our society is one which really dislikes children and makes no allowance whatsoever to their particular differences and just simply wants quiet and conformity. When will we learn?
Malusinka,
Thank you for sharing your personal experience. I know that must have been hard for you and your parents to have to deal with. I know my older son and my youngest daughter have also found themselves in a place of protecting Noah, while trying not to overstep the child to adult boundary of respect when an adult is basically misbehaving, not minding their manners and being unkind.
Pardon me, uh.. Jake...(who is really Marguerite Arnold) but what a fucking pussy!!! You can't attack me, so you go after a 9 year old with Autism. You need to be locked up, but I am betting you already are and you are posting from the fucking mental hospital. Say one more thing about me or my child and I will report you to the police in my county and in yours as a potentially dangerous stalker. That's not some bullshit empty threat. It's a PROMISE.
Troll. The best way to deal with trolls is to ignore them. It makes them wackass crazy.
I did not know there was, is, or could be an "autism apologist."
I did not know there was, is, or could be an "autism apologist."
Bonnie - I think you would agree, if you had been there and heard intonation, sarcasm, and self righteousness, and if you had seen facial expressions and read the body language, that I am not at all even close to ever making assumptions because that would make me exactly like the one's who offer nuggets of uneducated wisdom.

The ignored child trailing/wailing after her mother is not even close to the example of autistic children and their families.
After reading the other link I was very pissed. I started to go off on his ass but stopped. You give these people what they want when you reply, no matter what you say. I did flag him, and maybe the idiot will go away. Raising an autistic child is hard, and I salute you for having the balls it takes to do it. People as a whole are not bad, but there are idiots everywhere. You're doing a great job!
R~
Scanner - you are so right. And righteous! Thanks for your words, you soothe me.

Bonnie - OMG that is horrible. I can't believe those guys could do that and even live with themselves afterward!
Bonnie--because I am pretty sure this is a troll, educating them--or attempting to--is not going to happen. They get their kicks writing posts that drive people nuts. They've basically taken the backseat "I'm Not Touching You" game into the adult world. They don't necessarily believe anything they are writing. They are just writing whatever they think will cause the biggest explosion. And attempting the educate them is an exercise in frustration. They will possibly read your post and try and figure out how best to piss you off. That is the only thing they are learning: where your buttons are.
I am so sorry there was not one nonjudgmental decent adult around to help you in this situation or at least not add to your angst.
Recently, they raised the rate of folks born on the Autism spectrum from 1 in 150 to 1 in 100. Once it is more common, I hope folks will begin to understand.
When I did my post on corporal punishment, I was sickened by how many of the beaten were special ed--emotional behavioral, oppositional defiant disorder, autism, learning disability. In Texas (the worst), 10,000--a quarter of the kids hit--were SPED.
What the hell is wrong with us? Too much stupid TV?
I stopped in, and the shyte is toast, hmm... You are the flypaper my dear... Still wishin' on that star for y'all!
I just got here and the other link is gone. Asshole must have ran away like the pussy that he is. Don't let this sort of thing spoil your holidays. There will always be people like that.

Merry Christmas and the best of all things to you and your family.
I remember well the advice from the know-it-alls when I had my first child and how upsetting they could be at times. I never had to endure as much as you have and frankly I don't think I would have handled it with anywhere near the grace and class that you have! People are most definitely a judgemental lot!
God you guys are the absolute greatest. Every single one of you. You have no idea how wonderful it feels to have you all come to my post in support and share the love and those who made it to the other post before it was deleted to show your disgust at what that person wrote. You're my family. It means more than words can say. Thank you all so much.
That Macy's story is a hard read but very believable. I can see and feel every moment of it through your eyes in your telling. It is a great shame that people are cruel. Perhaps that's an instinctual thing, an ancient preservation method or something. But in any case, its still hard to understand and deal with when you're confronted with it. And it doesn't just happen to people with autism. All it takes is any type of deformity or abnormality or even just unusual circumstances to set it off.

Another thing that I have observed, not with autism specifically, but other types of situations-- is that the sufferers often become as viscous or even more so in their judgment and condemnation of fellow sufferers. I don't know why that is-- perhaps tied up in their own feelings of shame or inadequacy or pain-- whatever it is, its really perverse.

I can understand your unspoken sentiment though, and heartily agree-- why can't we just live in a place, in a society where people are good to each other. And if not good, how about at least not bad to each other-- and if not that-- how about just indifferent? Why do people have to go out of their way to be cruel?
Mr E - you have touched on a subject rarely discussed. The judgment of the disabled upon others who are disabled or different in some way. I can only speak from my own personal experience, but from what I have seen, it is socially learned behavior. It is what they have experienced far too many times from various members or groups of society (for instance the group of society known as children, tend to blurt out whatever crosses their minds without thinking if what they say might be hurtful, so the disabled or different child learns to lash out hurtfully to children their own age and slightly younger.) Additionally I have noticed that Noah, and likely many children and even adults like him perceive things that are not insulting as a put down. Similarly, I recently discovered that my son thought that when we are driving and let's say a car pulls out in front of me dangerously close, and I say, "you idiot!" to the driver of the other car, we all know who I am calling an idiot. But my son, being a totally logical thinker, sees no one else in the car and thinks I am talking to him! I mentally ran through all the insults I have hurled at other drivers and wondered how many times he thought I was insulting *him.* Wondering, too if he thought his mother was crazy to randomly verbalize insults to anyone in the car while driving! They perceive the world so differently than we do it is sometimes surprising even to the one's closest to them to discover how they understand or misunderstand things, but makes it very clear why the lack of language skills can frustrate the child's problems immensely. When Noah's language skills developed, his tantrums slowed and then pretty much stopped. Noah is lucky to have his sister who is so close in age. She is his interpreter of feelings, insinuation and suggestion. She also explains things to him, difficult as it may be (they usually argue because she cuts him off, and being Autistic, he MUST be able to say his sentence/thought from start to finish without interruption, right or wrong, then he can listen to what she has to say.) Unfortunately she also enjoys pushing his buttons when she is feeling crabby.
This old post is getting some new attention. If the comments are confusing let me explain: There was a blogger who posted a really horrid comment here, filled with hate speech towards disabled children. Most of the new comments are in response to that comment. The blogger's account was deleted from OS so all of their comments and posts are now gone. I'm glad.
"But my son, being a totally logical thinker, sees no one else in the car and thinks I am talking to him! "

That's stunning. And I would have never in a zillion years come to that realization unaided. I wonder how many kids that happens to- autistic or not? Riding in the back seat strapped-in really limits your viewpoint and awareness. I did know that. But never really considered much how it could alter interpretation of a situation. Thank you for the enlightenment.
This is my first time on OS since July! Just got your message and went right to this post to help you kick some ass!!! Alas, the coward has run! Hope you know there are more of us then of them. Hang in there and Happy New Year!
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