I have moved over to WhittereronAutism.com. Please follow the link to find me there. Hope to see you after the jump! :)

Friday, August 10, 2007

The art of disguise

I interrupt our regularly scheduled programming for a reality check.

If you are new to this site, I would respectfully recommend that you skip this posting and turn instead to a little jollity. I am a regular visitor to two jolly sites. One of these is "Dan's" which is guaranteed to bring a smile to your face, especially if you favour cats. Alternatively, you could nip along to "bobbarama" for a wee bit of glee. Trust me, they're safe.

So that was your final warning.

So now, it's just you and me, and nobody is listening. [translation = ear-wigging]

From a few weeks back, on our English Holiday,

[for "Joey's Mom" and "Leelo and his potty-mouthed mom."]

I have deliberately delivered this at the weekend, when visitations are lower, and only the truly desperate can make time in the wee small hours to find a little comfort......

I see her glance at my forearms, so I discretely pull down my sleeves to my wrists before she can focus, to cover all the bite marks. He doesn’t bite so often now, but it’s a habit that returns in times of stress. A holiday is a time of stress, unpredictability and an upset to the routine. Maybe I should try and explain why they bite? The complexity and different forces at work for each of them? The strategies to help each of them?

Her eyes rove towards my hands, “what have you been doing to yourself? Juggling with razor blades?” I debate whether to pull my sleeves down to cover my hands, ball them up like mittens, but it’s too late. “Oh nothing, just a bit careless with the roses,” I lie. It’s our own fault. We forgot to cut his finger nails, those little slivers of glass that slice and carve the flesh. Finger and toe nail cutting, is one of the most howling experiences, only topped in the agony quotient, by hair cutting. These 'self care' duties, are currently our responsibility, because we are the parents. His extreme aversiveness to these tasks, has had a similar affect on us. [translation = reluctance to do the deed]

But holding hands in a foreign land, is even more of an imperative than it is at home. You become so used to the little tell tale signs that you forget about them, they’re of no consequence. It’s only when you are subject to the scrutiny of outsiders, that you need to recall and re-use those old powers of deception.

Who would you tell such things to anyway? Why would you tell anyone? Who would benefit from knowing such things? Surely this kind of information that would only serve to bolster those people who already have reasons to criticize your children? This is the kind of information that helps justify the actions of people, who would do our children harm. As "Kristina Chew" points out, this kind of behaviour permits people to think they can "incarcerate our children," for their own well being and the safety of others. There are only a very few people, with whom I can share such information. A very tiny percentage of the population. The only reason I can think of, that one would bother to pass on such facts, are to people who may have similar experiences. People who also fear that they are the only people with such experiences. Other people who also feel that there is no purpose in sharing such information.

So much of what they 'say' and do is mis-understood, if only by me.

What can you say to the people who are shocked by such behaviour or to the people who are disgusted that you tolerate it, that you, as a parent, clearly have no self respect? To those people? Probably, I would say nothing. To explain, that in the great scheme of things, it’s of no great consequence. To explain that it is a mere irritation that lessens over time, that it is only one element of many. Everything is work in progress. If you doubt the description of 'mere irritation,' I would respectfully suggest the following: if the typical child, bites the typical parent, more often than not, the purpose, however fleeting, is to hurt the parent both physically and psychologically. However, with an autistic child the purpose has an entirely different motivation and as any good lawyer will tell you, the 'intent' underlying any 'offense' is pivotal.

On the whole, it’s re-emergence is entirely predictable and has to be balanced and weighed, against the vast leaps forward that they’re making. Head butts and their aftermath, are obvious to everyone, but a far more subtle, advanced and sophisticated development goes unnoticed. If he comes to a stop at the curb without prompting and spits on the ground, obviously he is a recalcitrant little thug. Such a socially unacceptable gesture, hides his willingness and ability to reign himself in, put on the brakes and stop on his own volition. No-one notices when he hands his preferred toy to his brother to share, nor his brother’s sotto voce, ‘cheers you are dah best one!’ Such trifles are of such tremendous significance that they defy explanation. [translation = it would take too long and we try to avoid lectures] But the minutely tremendous developments are profound for the patient.

I pick these two insignificant incidents, not as examples of 'normal' behaviour, nor as indications of social skills. The ability to avoid running into a road, means that he has a far better chance of reaching adulthood, a significant survival skill. The exchange between him and his brother goes to highlight the bond between them, that has only recently come to light. It may look like social skills, but to me it is empathetic, which is of far greater importance.

Whilst most Brits uncover at the first blink of the sun, I am safe in my long trousers. I claim the excuse of our Californian heritage, which gives me the perfect reason to keep my legs and the multi-coloured bruises, well hidden. I don’t expect people to understand the physicality of restraining 50 or 65 lbs worth of flailing body. It’s not deliberate, it’s escapism, when the fight or flight response kicks in, literally.

“But you look so tired dear,” she sighs.
“But it’s only jet lag Mum!” Isn't it?

It is these kind of holidays, that make me wish I'd taken the advice of those who really know, like "Bev" at "Asperger Square 8," and 'just stayed home.'

In the meantime, we are another year older. We are always learning new "techniques."

A large dose of rest, has restored my appearance to this current state of ‘worn out,’ as opposed to exhausted. And this year is so much better than last year. And last year was so much better than the year before. If we continue at our current trajectory, soon I will only appear elderly, like reverse rejuvenation therapy. Which reminds me to start a new campaign with them, namely, how to push me, their mother, in a bath chair. [translation = and how to apply the brakes] Now that's my kind of exploitation!

For a more mature and balanced perspective about how parents like me, misinterpret matters, please visit "Amanda" at her "site."


Linda said...

Yes, Bobbarama is great for a laugh when you need one; he's on my list of favorites and always worth a visit.

People who do not live something, or ever walk a mile in another's moccasins, are never going to understand what you are going through as a parent. I don't even pretend to understand more than a tiny tip of the iceberg and that's only because of my friend Cyndi. I still stand in awe of all parents of autistic children.

As for when I post, it varies! On days that I work it's usually at night and on my days off it can be anytime. Sorry for the confusion!

Jerry Grasso said...

What can any of us say that isn't said in Linda's post about walking a mile in someone else's shoes? The amount of TIME and ENERGY they have to invest in interacting in our lives will only eventually lead to the 'oh, I get it' moment.

I have often thought that we are so unlucky with our autistic/special needs children, unless they rock and moan. Downs children are recognizable two blocks away. Blind children have walking sticks, deaf children have hearing aids...we have children that often look like everyone else, can somewhat act like everyone else, then they are touched funny or see something that weirds-them-out or hear something, and then they erupt. We get looked at as if we are bad parents, with uncontrollable kids, and it just isn't worthwhile to begin to explain. Especially if they bite or lean into you, etc....


I'm with Maddie. I'm with you.....I hear you and understand...and kinda, that makes me sad for both of our families.

Anonymous said...

i do so love your writing. you are genuine, forthright, and you tell it like it really is.

it is always a difficult choice about how much you tell the world about things. what would people possibly understand? would people who do not have a child on the spectrum understand that my son prefers to sleep on the floor...and sometimes even the kitchen floor instead of a bed? there are just some things we grow used to as normal and then you go out into the big wide world and discover that we have no concept of what normal is. i often wonder what parents of NT kids talk or think about. i have no idea.

i am still developing my site and have added a page for questions. please feel free to stop by.


Jeni said...

Ok -here goes!
I agree with all three commenters here! But, and here's the rub, in my opinion -first off, how are people who know nothing about autistic kids going to learn ANYTHING about the things that often set these kids apart if we hide the actions, the results, our reactions, etc. away? I guess where I in your situation Maddie, I would have to determine first how well the person asking the questions about the marks is capable of understanding things - basic things, that is. How much does the person already know about the child? Are they aware at all that the child has, can we say "issues" to perhaps simplify things a tad.
Now - biting, throwing things (i.e. toys, books, newspaper, small furniture, plates, silverware, etc.) along with scratching, kicking, hitting, squeezing, etc. -let's face it most all children do that at sometime or other, some more than others and over longer periods of time too. It's behavior that is not considered acceptable in "normal" society - whatever the hell "normal" society may be. Right?
Some parents with "normal" kids will try to teach the child in some way, shape or form, to cease and desist in those actions and some parents with "normal" kids will not even recognize that their kid does these things but they WILL notice if your kid or mine does them. Right? Whether your child is an NT or autistic, does that aspect really make a difference then in the general scheme of things? Regardless, in my opinion, behaviors of that ilk should be worked on with the child to try to change, redirect, remove the "problem." Right?
However, when dealing with an autistic child, often one does have to develop new, different, really original strategies in order to achieve said desired results. Heck some "normal" kids take a long time in absorbing and learning decent behavior skills too whereas others pick up on cues very quickly as to right and wrong behaviors.
I understand fully what you are saying Maddie about how this year is better than last and it was better than the year before - it is all relative to what issues and the depth of those issues in each person's life there, isn't it? Maya is PDD-NOS, high functioning -yes, but that doesn't mean she comprehends things immediately, or even fairly quickly or sometimes, seemingly, not at all. But then suddenly something happens -out of the blue - and you say, "Where did that come from? When did she learn that? What did we do or say to get the message across?" And sometimes, you don't even know, or remember, what you did to get the message across.
RIght now, we're dealing with an issue pertaining to the fireplace in the living room - old, is never used, unsafe to be used as it was intended actually. The fire pit has these two little metal flaps that cover it and they lift off and Maya has discovered that recently. She's also discovered that when they are removed, there is a hole there -yes, as in the firepit - and apparently has decided that is an excellent place to put things -like a shoe. So far she is missing the right shoe now to two different pairs of sandals and we have hunted high and low for them but because we can't see, can't get into the box of this firepit easily here, we can't get in to dig around and see if the missing shoes may actually be in there until my son-in-law can go to the basement and take the damned contraption apart. Oh, the joys at times! So, we tell her to leave it alone. We tell her not to open it. We tell her not to place items in there and each time, she looks at us and smiles sweetly, goes about her business again until she thinks no one is watching, or no one can hear the metal being moved and presto magic, she's at it again. Is this only because she is autistic or is it because she is just a child, curious, impish, develish, contrary at times? And do we challenge her on this or just ignore it completely? THe objective being to teach the difference between right and wrong -regardless of the disorder - I vote with trying to teach her not to follow through again with these actions and for now, it may seem that there is no resulting change there but eventually, because she has been taught (or we tried to teach her) this is unacceptable, I think it will sink it. Although at times, when I look at her uncle who will be 34 this month, it does give one cause to wonder and he is supposedly NT! Go figure, huh?

Frogs' mom said...

I feel your pain (figuratively and literally). Frog went from biting to scratching to pinching us while biting his own arm. It comes with sensory overload, frustration, and occasionally in anger. His teacher, ABA trained, wanted to extinguish the behavior because it was not good for him or the educators who work with him. I agreed that it was not good, but asked what she would substitute. She didn't have any substitution ideas but asked if she could use a gentle aversive like flicking him on the face. How is flicking him on the face going to teach him that it is not alright to pinch us and bite himself? I told her no. A year later I told her we were seeing resurgence in the pinching / scratching behavior that I attributed to a developmental growth-spurt. She stopped me and told me “We don’t tolerate that here”. I wasn’t sure if she meant the behavior or the developmental growth.

Frog's behaviors lessened on their own, but at the height of the scratching it was common for me to go out in public with blood dripping from my face because my family was so accustomed to it, they forgot to tell me.

What gets me the most is going to a therapist’s office where the staff has seen this child every week for over two years and has his chart in front of them and still have the receptionists and secretaries tsk, tsking his "behavior" and my "parenting". I even had one secretary come from behind the counter, kneel in front of him and tell him "shhhh, you need to use your quiet voice." What, do I look like some kind of idiot? Didn't she think I would tell him to be quiet if that would work?! And yet, knowing him like they should, there is no accommodation for him in the waiting room and they all continue to be "surprised" by his outbursts. If you can't find understanding at the doctor or therapists office, seems pointless to look for it in other public places.

I agree that as a parent of an autistic child, I should educate the public the best I can to provide a more accepting, accommodating, world for him. I can do this through my public speaking engagements, but it is really hard to try to do the educating in real time with Frog right there hearing me "explain" him to total strangers. It feels too much like making excuses for him and he doesn't need any excuses for who he is and how he reacts to his surroundings.

I hope for you and me and all the other autism families out there that things do get better from year to year as children grow and parents learn cooping and situation management skills that make life easier for everyone.

Sarah said...

I think you're a loving, terrific mom. And in the end what your arms and legs look like is no one's business but your own and your family's.

But I do wish I could spell you so you could have a night or two off, or a trip to a spa, or...

The Shepcarpclan said...

"People who also fear that they are the only people with such experiences." This has been me until just recently. I have only just recently tried to explain, and to my surprise found friends that are there and understand. Our families don't fully understand why.

Usethebrains Godgiveyou said...

I am sad for you.

I never really had to put up with that, as Ben never even bit himself but one time that I remember. So just ignore what follows, because I REALLY am not in your shoes.

I do remember in about third grade him looking at me with a face that could kill. He was getting ready to attack me. "No son of mine is going to hurt his mother, so you better wipe that attitude right off your face!!!". I had never been so serious in my life. For some reason, he backed off. I still remember it as a change in our relationship.

You can't deal with this all your life. It just takes too much away from you. I am taking a chance that you will be hurt by my suggestion, and it is not my intention at all.

Our kids can thrive on fear. It is the only time they feel in control, when they can make us fearful.

A child at my school said, "I'm going to bite you, Miss Rose". I gave him my arm, in fact fed it into his mouth, and said "Go ahead!" (the 'I dare you' was implied). He mouthed my arm softly. I'm not saying it would work every time, and maybe I was just lucky, but I get tired of putting up with that stuff. I am grumpy as hell (get that attitude, girl), and he was probably afraid of what I'd do. I have the same unpredictability factor that they have towards us, and turn it around to them!

I had the strangest dream this morning...it was like I went back in time, when Ben was oppositional to every damn thing I asked of him. "Look at him!" I was telling my mother in the dream, "he can't do a damn thing I ask!" I remember YEARS when I felt that way. Mom's answer in the dream was to buy him some Lincoln Logs, in the hope he would "play normally"...Like playing normally was the answer to everything. He never did, and I like the way he is. I have forgiven him for being who he is. That's right, I held so much anger at him inside, that I needed to forgive him.

You are not going to believe what I say, and I am going to offend many people, and I could be totally off the mark...but for some reason, our kids do not bow down to authority as most kids do. They are like wolves, attempting to be leader of the pack, by nature. You must establish your dominance...you cannot be so kind that they will pick it up because even in Ben's case, it never worked for me...they need you to be stronger than them, to call their bluff!! Send them to their rooms. They KNOW when they do wrong, and if you allow it, it just builds on their consciences, and makes it harder for them.

You may live in fear of your own anger towards them. I am on anti-anxiety medication, which makes it possible to KNOW for certain that I will not cross that line, and beat the heck out of Ben.

Your weariness comes through in your posts. It is a signal that things have to change. Follow your instincts, not your mind which tells you it is beyond their control, follow the instincts that heaven gave you and do what you can to make sure that wonderful person, YOU, is not mistreated. You must be strong.

email me at rwalker49 at sc.rr.com if I haven't totally alienated you. I am not better, I don't walk in your shoes, but I am in my 13th year of parenting an autistic kiddo. I have already made more mistakes than you can imagine, and have many regrets. But things are so much better, and Ben and I have an actual relationship that fills us both with unconditional love.

He was driving me so crazy at one time, I gave him cards that said, "patience", like three of them that he kept in his drawer. They were like a 'get out of jail' free card, and I had to give him grace, ie, forgive him, regardless of what he did, and start over at the moment. I just looked through his drawer, and I saw I had also given him three "no fun" cards, when I was being especially grumpy. Three times a day he could change MY attitude, with a "card".

Dear heart, you are in my prayers!

I apologize to everybody!!

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