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.”
August 10th, 2007 at 11:43 pm
I was talking to another parent tonight about head-banging and how, though it was (understatement) hard beyond words for all parties, it has been good to write about it, and on the internet.
Sometimes there is nothing one can do but hold onto one’s child and wait for it to end, and the child—-so unhappy, so needing—is still there. And one needs to be a mother, and one is completely fatigued, mess of a house, no dinner, late hour…..
They also serve who only stand and wait.
August 11th, 2007 at 4:30 am
Oh Maddy! You’ve shed your usual tone of levity in this very sombre and moving post and that has really touched me deeply. You’ve asked and answered a series of questions that I’ve had on my mind for years. The one I liked best was “Who would benefit from knowing such things? Me, for a start. I sometimes fail to appreciate how far my son has come from the hitting, spitting, scratching and pinching days when he used to hurl objects large and small at those nearest and dearest to him. Another candidate for such insight from Moms like you is surely the “mother at the swing”. As Vicki Forman points out, compassionate mothers can educate themselves and others about children with special needs.
And you’re dead right about the people who’re disgusted and pass judgement without knowing the facts. They’re the ones who’re beyond teaching and reaching. Lie to them and move on.
It’s good of you to remind mothers of autistic children like me to look beyond the violence and self-injury and treasure the “vast leaps” our children make. From this day forth, I shall hold my tongue whenever I’m tempted to snap at my now very articulate, mostly well-behaved son “You should know better, autism is no excuse”. I’ve failed to marvel at the fact that he who was expelled from school at 3, 5 and 11 years was able to attend a “normal” 2-week summer camp in July 2007 on his own at the age of 12. One year ago, camp, normal or otherwise, was out of the question for fear of the dreaded phone call “Come get your son right now”! If your blog had existed when I was going through the bad patches I would have seen “that in the great scheme of things, it’s of no great consequence”. I can’t help but end by dedicating a few lines from the poem “Invictus” to you:
“Under the bludgeonings of chance
My head is bloody, but unbowed”
August 11th, 2007 at 5:46 am
****HUGS**** Thank you.
We have been giving Joey hugs and telling him how proud of him we are- such great strides this summer- but the biting really has us on teh edge with both of them. How will they get on at school? How do we help? We’re already nervous about the self-contained placement- what does it say about how these people see Joey?
Next year, let’s hope for “really tired” instead of “worn out.”
August 11th, 2007 at 6:04 am
I decided the moment they started to crawl that the word was “no”. I’ve always treated harming others as inappropriate behaviour and dealt with it as such. When the eldest tossed things (I have few trinkets and all are out of reach), he had to pick them up (hand over hand) take them to the playroom and was allowed to toss his toys there and there only. He learned. Biting and scratching I always grabbed his hands, body and moved him to his bedroom and left him there. I’m not scratching post. Again, he got the hint over time. In public I grabbed wrists instead of hands, keeping out of the way of the nails dropped whatever I had and went home.
Headbanging was a long one, started around 18mths. Was told he’d never hurt himself – yeah, right.. and I believe that one….. And I did allow it – sort of. I would pick him up and move him around the middle from behind, depending on what he was banging off of. Glass was a “no-no”. We had a permanent bruise/callus on his forehead.
Removal of dairy helped all of these except the last. It had become too much of a habit and sensory release. Over the last year we’ve mostly gotten rid of it (he’ll be 8 in a couple of mths). He knows he may bang on the floor or his hand ONLY. Anything else is wrong and he loses priveledges – like his bike or his tv. Tossing things… ditto.
Luckily, this has never been an issue with the little one. We’ve had floor humping (deep pressure) which has lessened unless he’s ill. Finger wringing – courtesy of ABA – and I’m trying to get rid of that by massaging his fingers and saying “no – hurt” (blisters, twisting fingers – Dr claims is hereditary… have never seen twisted fingers before and it’s on the hand he twists only). I allow vocal noise until it drives me batty and then say “no – too loud” (he knows from his speakers on the computer what loud is). Flapping is still allowed since he requires some form of sensory release and this seems to be the least damaging to his body and most socially acceptable or recognizable by those that don’t live with it 24/7.
S
August 11th, 2007 at 6:35 am
The eldest interrupted me.
Best piece of advice I’ve ever been given is by the nurse when the little one was born “before you start anything… decide 2 things…#1 – can you live with it…#2 – can you break it”. Especially with a child with ASD IMO this very much applies.
Society has rules. Rules are to be obeyed by all. I am not going to stand at a corner and be afraid of adults with disabilities including my own children. Therefore also IMO (and Dr. Temple Grandin’s) “autism is the reason, but not an excuse”. Those rules must be taught.
Lastly, right now I can physically control my children. Pick them up, and move them out of harm. What will I do as they age?? Toss in hormones, size, strength and you have a bigger mess. Again, if you can teach something to a NT 2 yr old. You can teach it to a child with ASD. May take longer, be exhausting and frustrating (toiletting, I am not having fun) but it is possible.
I refuse to be harmed or threatened or feel threatened by my children. So yes, I work and work and work on behaviour. And roll my eyes when parents with NT children think their children should get away with things that I work so hard at (like talking out of turn, mouthiness etc)
S.
August 11th, 2007 at 7:37 am
when our son was diagnosed we were told “pick your battles carefully” which was brilliant advice. very early on we decided unless it was going to hurt our son or someone/something else we would live around it and try to work out ways of minimising it. he has adhd as well as aspergers/high-functioning autism and the manic stuff was harder to live with (we live in a small wooden house where noise reverberates to next door). but as time has gone on he has calmed and we have mellowed. its a long time since he head-banged or hit or bit us although he still goes for people at school on occasion.
as for people who can’t accept our son as he is – they are no longer in our lives. there are plenty of humane, kind, accepting people around, especially the parents of other kids like ours…
August 11th, 2007 at 8:05 am
To farmwifetwo: I’m all for rules and saying “No” but before some form of two-way communication is established it’s extremely difficult to get the point accross. Once communication is in place, then yes, you can correct inappropriate behavior. Ask my son, who by the age of 8, abandoned the “behaviors” one by one as speech and understanding grew.
To Maddy (may I?): I admire your calm and patience even more. And yes, your perspective is admirably balanced. Thanks again for this post.
August 11th, 2007 at 9:38 am
Well I made it to “cheers you are dah best one” before I started crying. I started blogging simply because I had to tell someone. And who can you tell? Nobody really. I wear long jeans because I’m hiding bruises that are the exact shape and size of Patrick’s big toes. Until recently, if I had to restrain him in any way I ended up looking like I’d been through a war. My father in law recently told my husband he didn’t remember his children being like Patrick. I will love my husband forever because he said bluntly, “well he is autistic you know”. It’s hard when family doesn’t understand either. A large leap in communication helped a lot. So did reading wonderful blogs like yours.
August 11th, 2007 at 10:23 am
I loved this post, Maddy – so refreshing in it’s honesty. I learned a lot… I understand more! You may not realize it but when you share your struggles and how it feels to deal with other people’s ignorance, you educate the rest of us. I have so much respect for you, because I KNOW it isn’t easy and it never will be. Your boys are truly blessed – God saved for them the best mom!
August 11th, 2007 at 1:17 pm
I’m glad I visited this blog of yours today–I’ve seen the others, but I’ve not come here before.
And I think you should write a book. In a few years, when the trajectory towards “easier” has continued, you should compile your posts and shop them around. As a reader, I am moved and amazed and a little in love with you (um, in a good way).
August 11th, 2007 at 2:13 pm
How did I stop being stood on, kicked etc.
I put the child down and moved.
My youngest is ‘non-verbal’. But I still remember his 2 yr Dr’s appt when he was rummaging in her drawers and I said “NO”. He closed them. The Dr was surprised. We taught him… every day. No.. means exactly that “no”. Took a LONG time, lots of hand over hand and redirection.
It’s not “ok” to be assaulted, by anyone. And if you start from day 1, it can be stopped. When I was pregnant the eldest – who was non-verbal and stoned on dairy at the time – learned quick to either sit nice or not sit with Mom. I put him on the floor and moved. He screamed, I walked away.
This (and toiletting and speech – even just one word communication) are my top 3 things anything else is a bonus. I refused to have them kicked out of school or put in a behavioural class or be embarrassed by his behaviour. I’d heard all the horror stories and decided I could not live like that. I’ve worked on it since they were 6mths old and started to crawl. Rules have never, ever changed. Took constant work… still takes constant work. They are 7 (fully verbal) and 5 (non-verbal).
But it’s been worth every moment. Every time they go to a program, every time we go to a family “do”, every time they go to school, and I get a “your children are fun to be with”… I try to remember that when I’m in the midst of a temper and remember to hold my ground and walk away. Now, if I can get the last one toiletted… I’ll consider anything else a bonus.
S.
August 11th, 2007 at 6:16 pm
My mother is horrified by what I “let” Arie do to me. I make jokes with him; I once had a kicked shin turn into something rather nastier and my body encapsulated it and I got a lump that had to be removed. The doctor said that it must have been a very hard blow to create this spot, because basically some of my cells died, which is why my body encapsulated the part, quite sensibly, to avoid gangrene.
“A part of me died that day!” I always say to Arie, who of course doesn’t get the joke, but I have a laugh.
Arie, who is extremely high functioning, even for an Aspie, and thus no one gets him, has spit in my and his teacher’s faces, bitten (although that, mercifully, has stopped), kicked, and head-butted with startling accuracy and force. He’s scratched. Most of the pain he’s caused, though, has been just by flailing around in a frenzy, utterly unaware of what he’s doing.
My shins and arms are generally covered in bruises, although I, like you, rejoice in the fact that it’s far, far less often now, and Arie has begun suddenly in the past few months to show remorse and touching concern.
I lie, though. I tell people I’m clumsy. I’m a classically trained dancer. I’m not clumsy. But that’s what I tell them, because I just don’t want to hear it.
You’re right; the ones who you can tell already know from experience.
August 11th, 2007 at 6:25 pm
I wish everyone’s solutions to problems worked for everyone else. But they don’t.
Joey has a Thursday Friend for therapy, and that mmo also has a child my Andy’s age with ASD. Both children are aggressive. She also has the bruises and the bites. Tossing the child into his room is not an option- for one, she has two of them, and for two, they would hurt themselves. She isn’t just choosing to “live that way.” She is choosing to protect and help her children, and sometimes you get battle wounds along the way.
We’ve been lucky. Joey’s temperment means we don’t get the level 10 meltdowns on a daily basis anymore. I don’t have to restraint him very often. It is very insulting to get dirty looks or judgments about when it is necessary, and when I get a mark. I’m certainly not going to second-guess or armchair-parent for my friend, often dealing with two meltdowns at once, on her own, and trying to keep those boys from hurting themselves and/or each other. Constructive advice is one thing. Nagging and criticizing is quite another.
August 11th, 2007 at 7:17 pm
I cannot imagine criticizing another family like that. Or ever suggesting that a child would be better off somewhere else. It always amazes me what comes from people’s mouths. You do what is best for your family. Period.
August 11th, 2007 at 11:23 pm
Maddy, I don’t have words for you… not that you are looking for words from me.
For someone who has very little, virtually zero, experience with Autism, I would never have considered the physical aspect of parenting a child with autism. I’m sorry for the things that people say which are hurtful. I hope that I am able to learn enough to never do that to someone else. I feel like my eyes have been opened a little bit today.
Thanks and keep hangin’ in there. You’re doing such a great job. Those boys (and your girls) are very blessed.
August 13th, 2007 at 9:58 am
Little Bug head bangs and flops around, but has only taken a bite of someone twice. The one time it was deserved. I’m a horrible mom, I know… we were in church and my older son kept poking Little Bug. Little Bug would scream and fuss. I leaned over to my son and said, “That is his way of asking you to stop. He doesn’t want to be poked. Leave him alone now, okay?” The response I got was “Okay Mom”, but he continued to poke and prod and giggle each time Little Bug screamed. Finally Little Bug had enough – grabbed his brother’s arm and bit him. He cried out “He bit me” and I, in all of my horribleness said, “He tried to tell you to stop. Remember? The screams meant ‘leave me alone’? You didn’t listen so he found a new way to tell you to stop… are you going to listen this time?” That was the end of the poking. I did tell Little Bug not to bite, but inside I didn’t feel too bad about it. I know… I’m awful…
August 13th, 2007 at 7:29 pm
As you know, my daughter and stepsons are neurotypical. However, I began my parenting career with two very angry boys, aged 4 and 6, 22 years ago. Happily for them, somewhere along the way I had picked up the idea: “All behavior is communication”. A 4 yo spits at me? OK, what’s the meaning? Haven’t you ever heard the expression, “I’m so angry I could spit!” He just acted it out, that’s all. Both boys behaved toward me in vile manners of all kinds….but they were always sweet and loving to my dog. I remember soothing myself, again and again, with the idea, “Well, if they were vile to [Puppy] I’d be worried. But they aren’t. They argue over who gets to have Puppy sleep with them. They make their mommy buy presents for her. That’s good enough to go on for, today.”
Yeah, I shrugged at Leelo’s behavior, and at the time I thought it was just because I’ve worked so much with dogs and horses. But then I had a realization:
I’ve spent the last 5 years watching my darling, rosy, girly-looking daughter trying to beat the snot out of any and all at Tae Kwon Do. AND she is so proud of her wounds, scars, and bruises: (“Oh, that’s where Jun tagged me with the bo staff, this one over here is when I didn’t block Becca’s strike, and that big one? That’s when I nailed Peter but he got me on a roundhouse kick.”)
Kind of changes your attitude about people hitting, striking, and kicking other people. Al says, “I LOVE sparring!!”
August 14th, 2007 at 7:08 pm
Well thanks so very much for mentioning my blog! That was very sweet of you! Hugs.