How much ‘control?’ Is sometimes it necessary to be ‘ cruel to be kind?’

This thought has been going round my head for a few weeks now and it just won’t go away. Instigated by the reading of various posts online and chatting to other parents of children on the spectrum. I know when we had ‘ that half term’ and our lives were turned upside down by J’s behaviour and we finally started some research of our own and look at his behaviour as objectively as possible and realised that it was highly likely J was on the ASD spectrum somewhere; may people told me to ‘give him control and his behaviour would improve.’ But exactly how much control ? When is that too much? When is it not enough? I think sometimes people think I may be a bit harsh with J – let me explain:-

Over a year ago (without knowing what we know now… although I am going to write this and even I am going to think how an earth did we miss it?)) J would only eat and drink from a blue plate . Any deviation from this and the meltdowns ( I now realise that this is what it was ) occurred…. screaming, kicking, etc etc lasting from anything for 5 minutes to over an hour. This went on for a few weeks and something went ‘ ping’ in my head. I had to help j tackle this- what if we happened to go somewhere with no blue plate or a blue plate but a green cup? He couldn’t , realistically, spend the rest of his life only eating from this blue plate and cup or his life could be seriously restricted. So I took a deep breath one day and I carefully and calmly explained that we didn’t have the blue plate anymore and offered him a choice ( giving some control, i feel) that he could have a blue cup and either a green plate or a red plate- which would he like? As expected , the meltdown came. But, once calm and with much support, my boy ate from a red plate! And he was told ‘ what a clever boy and praised like mad. That moved on to replacing the blue cup aswell and I now have a boy who can eat from any colour plate or cup and it isn’t a source of stress going out and I don’t have to go into something akin to a panic attack if I have forgotten to pack our own blue plate and cup in my bag.

My point is this- did I do the right thing? Would some view this as cruel? Or even that I am too controlling? Should I have let him just eat from his blue plate and cup forever- or until he was ever to give them up- whatever came first?

I shall be honest, I try to strike a balance with my son. I understand that when he is having a really tough day that he needs an extra 20 minutes on his own on the computer or counting to 100 or looking for a BBC logo on something…..and I know he needs me to understand that too, I am sure. BUT and this seems to be a big but, I do not let him play indefinitely on his own doing his own thing and I know some parents do this. I am not here to judge, as don’t get me wrong i would love to have a quiet life (!) But I feel ,as J’s mum, I need him to understand that life is not about having your own way all the time or that it is ok to place unrealistic demands on all around because if I don’t help him with this I think a) I am just insulting his intelligence and capabilities ( a weird kind of ‘does he take sugar’ scenario)… ‘ aww bless him, he can’t help it, he’s got Aspergers and giving a token pat on the head.

And b) I am seriously impeding his chance to be all he can be. I do not want to change my little man but I do want to help him to learn how to cope and function in this world as this world is not going to bend to accommodate him. At some point I am sure he would have had to face the ‘ I am really sorry we don’t have a blue plate ‘ from someone other than mum… who would be less likely to be supportive, more likely to end up with J in trouble and if an audience ( e.g. School or a cafe) , well it wouldn’t do much for his ‘ street cred.’:)

I know alot of parents and I know alot of special needs workers too ( I could tell you a tale about an autism outreach worker I met up with years ago but will save it for another time!) who will be more likely to give in to unrealistic demands more frequently than myself and I have to say it concerns me. Even if this is done with good intent ( i don’t want to upset him/ her , life is hard enough. ) Although and I don’t want to offend , but it is also sometimes done out of fear ( fear of a reaction and fear of how to cope with a possibly violent reaction) and maybe even for that ‘quiet life’ …. option a) explain that another 10 minutes on the computer is enough for 1 day and then it is time to do something else( go to the park together, bake a cake, build a robot , bounce on a trampoline.. whatever) or b) Hmmm , if I leave him or her for another hour or so I get more time to myself to catch up with a friend, do the ironing in peace and quiet etc / Don’t have to deal with bad behaviour that is hard to handle and makes me feel terrible .

The reason this approach concerns me is this … experience. I worked on a challenging behaviour unit a few years ago ) not that many where I could be convinced services have changed drastically since I worked in this arena) and many of the people on this unit were on the spectrum…. some had Aspergers, some were more severely affected by autism and were non verbal also. They had little freedom or choice, no independent life, no job, few friends ( apart from some of the support workers.) My background was in psychology and behavioural therapy and when I started working there I was absolutely appalled so many times over. 2 of the residents there had not been outside their own front door for over 7 years! 7 years? Can you imagine your behaviour if you had stared at the same 4 walls for that length of time… I know I’d be bloody challenging! The reason they had not gone out was that one of the young men ( 20’s) ‘ refused’ to wear anything other than blue shorts and an orange t shirt- winter and summer alike and he was terrified of mini buses. The 2nd man ( early 30’s) was highly challenging, scratched , bit mainly because , I believed, he had nothing else to do- so may aswell get a rise out of the staff team than be utterly bored! I am not explaining this so everyone will think how wonderful I am , merely to put a point across. The first young man I started to challenge about his clothing… slowly, very slowly and always offering an alternative where possible. It took a full 6 weeks of support, patience and understanding and even bravery from the staff team( I still have a scar across my chest from where he had a complete meltdown the 1st time I explained there were no shorts) but the same young man walked into town and bought his own clothes ( not just t shirts and shorts either!) found a passion for films and ended up starting a college course on something to do with technology. ( As for the minibus.. a little dig into his history and I discovered he had not been properly fastened in whilst being escorted to special school aged about 7 years and had ended up falling out of the back of the moving mini bus… no wonder he was terrified. Again , slow steady support and on one of my last shifts he went for a ride in the mini bus for a meal out in new smart trousers and shirt and tie!)

The 2nd man… severely challenging… 1stly accept his intelligence ( he was a very bright man) and when he spits on the floor ask him and follow through with support for him to clean it up- rather than dashing of for disinfectant and cloth for yourself. Try to give no attention to his behaviour- when he hit- walked away, no eye contact, nothing. It took 1 week for the spitting to stop. After spending quality time with him, I discovererd he had a fascination for water… it was a way in. To cut a long story short, a behaviour program was put into place that reduced his challenging behaviour and meant after 7 years this guy went out into the world, spent the afternoon having lunch near a lake and many more enjoyable outings followed. Some people disagreed with this and thought I should have just tolerated the behaviour and it was ‘ unfair’ for me to challenge these men ( mainly disgruntled staff who wanted an easy life!) But suddenly, these 2 men had some real quality of life.

Whether people agree with me challenging my son every now and again or not- I think back and my motivation is simple…. that will not be MY boy, not able to go out as no-one has supported him to face his routines and demands in a sensitive and appropriate manner, it will not be my boy that will only eat from a blue plate and drink from a blue cup and not be able to leave an institution essentially. I will fight every step of the way for my boy and if I have to suffer a few kicks and bites and screams along the way, so be it. I am his mum and it my job to help him achieve all he wants to achieve. ( and if gets a job where he can spend 8 hours a day on a computer, good for him! But I will equip him with skills and coping strategies that mean that this is not his ONLY option:)

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3 Comments (+add yours?)

  1. Deb at aspieinthefamily.com
    Aug 20, 2011 @ 17:10:46

    Really interesting post. I also strive for a balanced approach. I challenge my son where I can but if my son is unresponsive, angry or in meltdown I don’t. I try and challenge my son now and again, when I feel I have a chance to help him learn something and make progress. In fact, thinking back, it was only by challenging my son that he eventually recovered enough from his agoraphobia and school refusal to return to education. Even now he has a tendency to want to be reclusive at home so I am always encouraging him to get out and to break his reliance upon the computer. I think we are getting somewhere with this.

    PS saddened to read how some of those residents were treated but its good to hear how your positive work turned their lives around.

    Reply

  2. highlanddream
    Aug 21, 2011 @ 08:14:16

    Thanks for your comment , Deb. It sounds as though we have very similar approaches:) I am so pleased to hear about your son’s return to education with your support and encouragement. PC’s are a blessing and a curse aren’t they! My son would happily be on one all day ( educational activities as he loves numbers and reading and science type activities) and I know that isn’t unique. As much as it feeds his thirst for knowledge, it doesn’t help him socially, obviously. Without some level of challenge from me on his ‘good days’ my son would go out (occasionally) to the library, Tesco’s and ‘the Green Shop.’ ( Subway) and that would pretty much be it. As well as hindering him in the long term, when you have another child (ren) it is unfair not to consider their needs and wishes too. Not easy being a mum is it ? 🙂 Best wishes to you and your family.

    Reply

  3. Jodie Smith
    Sep 11, 2011 @ 14:17:09

    this is fascinating. I read so many things where an ASD child will only do this or that or else there’s a meltdown and I wondered if I was sometime being cruel in expecting my DD to deal with things. But I think the fact that she has, and she now has coping strategies to deal with upsetting situations makes her better equipped for life and eventually more independent. Even the SENCO at her school says we need to teach her coping strategies. And the fact that she can learn these strategies means it can’t be cruel.

    there are certain circumstances where i won’t force her. Or I pick the right time to deal with that issue. for instance I respect her need for routine and for going the same way to places. But then I’ve read of ppl who couldn’t go visit their parents for 6 weeks because there was a road diversion. and life will throw interference in routine and there will be diversions. so when she’s not tired and in a better coping mood I will throw in changes, to help her learn to deal with them. However, when she’d had a full week for the first time at school and was very tired and not coping with anything then I didn’t force her and stuck to patterns.

    Reply

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N.B. the title of this blog comes from my son’s very literal understanding of ‘ magic carpet ride’ ….. he believes this to be a ‘car pit’ ( as in ‘ sand pit’) and demonstrates this with a plastic lid and toy car. The magic comes in when the toy car is covered with the lid and it disappears!

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