Sunday, 26 September 2010

Why Is It Still OK To Judge Children With Challenging Behaviour?


Readers of this blog will know that Lyla's violent behaviour is something I have to deal with frequently.

Thankfully the episodes have become less frequent and intense, over the past three years. But there was an eighteen month period when I was enduring a 3 hour assault almost every single night.

It took this long to unravel the causes of her behaviour- sensory issues, hyperactivity, anxiety and a deficit of the sleep-inducing hormone melatonin, which has now been corrected.

It's only now that things are getting better, that I feel able to make sense of it. Emotionally, I spent an awful lot of the time in lockdown mode, not really very far from cracking up.

The charity Parentline says that it receives 53 calls a month from parents who's children attack them violently. Having been in this situation myself, I can say that it is one of the most soul-destroying things which can happen to you as a parent and as a human-being.

If we are attacked by a stranger, this is a terrible event and rightly there is recourse to justice and the law. If our spouse attacked us, there are refuges and we can leave them.

But what happens if your child attacks you? Well, just a whole lot of nothing.

It is one of the loneliest most isolating things that can happen. It's hard to talk about it openly as people either avoid eye contact, scuttle away and try to avoid ever speaking to you again or offer advice, which whilst often well-meaning isn't really very useful.

Parenting advice isn't hard to come by these days. Most people experiencing a child's challenging behaviour aren't in this situation because of lack of advice or information.

What's really needed is genuine help.

Getting to the root of behaviour issues in disabled kids can take weeks, months or years and may sometimes be impossible. And in my experience the 'help' offered isn't help it's advice.

That's a big difference, when you're at home on your own, your child has just broken your tooth, is threatening to smash a window and is screaming because they have thrown themselves into the side of a table. What you need is somebody at your side when your child is attacking you for moral support and help protect you and your other children.

For some people, dealing with challenging behaviour is worse than this, they have to give up their kids to full time care because they simply cannot cope- the situation is totally unmanagable. It's a terrible situation to be in and I feel that nobody has the right to judge unless they've experienced the same themselves.

Another outcome is the feeling that you're constantly being misunderstood at best and judged at worst. Other adults seem to feel that 'naughty' children and their parents are fair game and I have to deal with people taking a pop at me over Lyla's behaviour with boring regularity.

Frankly, dealing with the child's aggression is hard enough, without having to deal with the opinions of armchair experts and elderly-relatives. It sucks, really, it does.

But, because we are narcissicistically obsessed with parenting these days, the consequence of having difficult children is that you are fair game to be judged. Usually, there is a very thinly-veiled hint in any 'advice', namely that you're not a good parent and this is all your fault. If only you could do it perfectly (like them), your child would turn into the Sugar-Plum Fairy.

Dishing out advice or gawping or tutting is a lot easier for people to do than actually having to help you.

Sometimes I feel that just witnessing my life pierces peoples cosy karma and they would rather blame me and stare than consider that this could happen to them. I remember once wrestling with a screaming Lyla on the stone steps of the Natural History Museum, trying to prevent her from headbutting them during a tantrum. During the twenty minutes or so this took, I looked up once or twice at the parents snaking around us in the long security queue. Their faces were a picture of sheer undisguised horror- not one person offered to help me and all of them gawped. I almost felt sorry for them as they struggled to make sense of the spectacle unfolding and felt like maybe I should apologise for bursting into their perfect little family bubbles and reassure them that no, their little Johnny woudln't be doing this any time in the near future, the little furore was caused by autism.

But I didn't, because after all, why should I?

Over time, my ability to ride out these situations has significantly diminished. Some people resort to T-shirts boldly declaring their child's condition.

But for me, I feel that it isn't the business of strangers to know and I just try to return their stares with an extra-hard one of my own.

And other times I just go home and cry.

I won't labour the point but putting up with your child attacking you for hours on end day in day out, is just indescribably hideous and waking up knowing you've got that to look forward to can make life feel like it's not worth living.

This is a serious subject which in my opinion warrants more than sub-Jeremy-Kyle-style journalistic treatment.

This is why is why I was on the verge of pelting my TV with eggs the other morning.  An item about a seven-year old boy attacking his mother was discussed on UK morning TV programme Lorraine the other morning. Too often, the attitude, even from so-called professionals is Blame the Mother- Blame the Child and sadly this was the attitude here.

The psychologist invited to advise the child's mother was at pains to point out that she was 'a parent too'- which qualifies her to comment on parenting an autistic child in precisely no way at all.

A short sermon on 'setting boundaries' was followed by Lorraine's summing up with this nugget of parenting gold 'well at some point there has to be discipline doesn't there?' Would somebody please give these women a degree in stating the obvious?

Whilst this is mildly annoying, it confirms what most parents of challenging kids feel- that everyone thinks they are to blame. They are bad parents because they haven't disciplined their child enough or there haven't been enough 'boundaries'.

Even though this is clearly nonsense.


So, my challenge to Lorraine is this: stop making cheap TV by putting the boot into vulnerable families. If you really care about the families involved, start a campaign for HELP for families dealing with challenging behaviour.


Maybe then we'll start taking you seriously.


_________________________

Resources which you may find helpful:

Challenging Behaviour Foundation -their service is geared to disabled people who have learning disabilities, but they will help people without learning disabilities if they can.

National Autistic Society- factsheet on challenging behaviour.

23 comments:

  1. This post has come just at the perfect moment as we have had to deal with the challenging behaviour of our very large nearly 14 year old son who has autism. It can be quite scary and the so called 'experts' and sw have no idea AT ALL of what it is like to live with such a child. Shame that person you are talking about shares my name :-(

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  2. Hi Lorraine (didn't know that was your real name! :)) ....sorry about what you're having to deal with :(....this post is something I've kept inside for so long, but it's important that we speak out- people need to know the reality.

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  3. I am sat readingf this post in tears, as it is so true. Mini is challenging and this week has been hard, my arms are covered in bruises and broken skin from nips and he is only 4 year old. people are quick to judge me and it really upsets me

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  4. This is one of the reasons why I'm so desperate to get some decent advice on how to manage Nipper's behaviour. At the moment he occassionally becomes physical and I really want to find out what it is that's causing his meltdowns. I can only identify that he doesn't ever want to do as he's asked. I guess there must be something behind this but presently I haven't a clue what it is. We've tried 'time-out' so many times and it just doesn't work but I don't know what to do otherwise??? I get heartily sick of people like Lorraine Kelly!

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  5. @TheMadHouse so sorry you've been having a hard time, it's beyond horrible, have to say, I've been wanting to write this for ages, and when I did, i was really upset....if you want to chat about it, email me at rachelnixon [at} btinternet.com....I have been through loads of ways of sorting it & would be happy to help :)

    @Tilly

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  6. @Tilly If it helps, you're not alone- Demand Avoidance (as it is known!) is a classic symptom of ASD kids- I have tried INFINITE ways of dealing with my recalcitrant one....I'm happy to chat if you want to email me- think my next post might be about this....and yes, time out definitely doesn't work (for starters, how are you supposed to make them sit in one spot!!!)..there is stuff you can do though- for me it's come gradually over the last 3 years and still it's a daily battle to get simple tasks accomplished (putting on shoes, getting in the car, taking medication etc), but I can give pointers as to what helped for us :)

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  7. Max is calming down a lot now he's eight, but he could be very violent too at times - he broke my glasses a couple of times... But what bothered me more than that was, as you said, people's attitude. Once we were in the UK visiting family. We'd had to come out of a bus because Max was having a tantrum and everyone was staring hard. We were walking back with Max on my husband's shoulders, whimpering, and half naked because he'd kicked out his jacket, t-shirt and boots. The police picked us up. Turns out some 'helpful' citizen had seen us struggling with Max and decided we were probably abusing him so called the police. Fortunately the police themselves were very helpful and kind. But I felt angry and powerless for a long time aftewards. If you see parents struggling with a child, don't call the cops on them before you'd at least offered to help!

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  8. It certainly does not help when so-called experts and those of older years feel it is their right to judge and even offer advice, mainly on a "I am right and you are wrong" basis. I have been through this many times with Amy and I often just nod before pretending to agree then walk away. It does suck. It also hurts, and it can be very disheartening especially when it is our own families who are often very quick to offer advice when they know very little about our closed door situation. More help is desperately needed in order to tackle these issues and a great deal of support is needed for parents and carers. The ignorance we have to face as parents of children with a disability is immense; you only have to switch on the television to see that, and see how few disabled children and adults alike are featured on our screens, not to mention autistic children who are often more than capable of acting to the extreme. We all know that violence should not be tolerated in any situation, but our unconditional love for our children will always dictate our patience to help them; even if we feel that help is needed from an outside source.

    Love CJ xx

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  9. @Sandrine- Can you believe people called the police? I'm afraid I can because it's happened to me too, but I haven't had the courage to blog about it- was one of the worst days of my life! (My other daughter was running off down the road screaming 'I can't take it anymore'.....only now can I laugh about it!!

    @CJ So infuriating isn't it- and I agree so much about the lack of autistic people who are 'seen' in the media...and you're right, our love for our kids is the only thing that makes it possible...

    ...nice to know we're not all alone :)

    xx

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  10. Rachel, this is such a well written blog post and touchingly raw and yet informative at the same time. I am the kind of person who is like "okay, what is needed and what can we do?" I would love to hear a post outlining EXACTLY what help you need and should be on offer for people, because the thing I feel is that the 'experts' probably need to be told because they don't experience it and therefore they don't know. You would probably be helping them by spelling it out.

    I don't go through this although I have had the odd moment, however today for example taking G for a one to one swimming lesson I told the guy that he had ASD/AS and did he know what that was? He had no idea and look disguisedly horrified, telling me that it was hard enough learning to swim but to have anything additional was going to make it harder, like it was MY FAULT, and I wanted to tell the manager immediately that if they were going to hire private swimming instructors the least they could do is ensure training in ASD because some people choose one to one (like me) because group swimming lessons don't work. I am going to be writing a letter to the manager to flag this up.

    I guess we really do need to spell it out and ask for the help/support that we and our children need . . . .

    Hugs to you and I'm here always as an ear, an arm, a shoulder or whatever :)

    Let's do lunch.

    Amelia.x

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  11. It's mind-blowing what you were dealing with Rachel. I know that I struggled with violent behaviour - also much better at the moment - but nothing compared with you. Maybe it's cos we're in Ireland, but I often got people telling him off in public, and to stop being so mean to his Mammy, especially if I had his sister plus wheelchair with me! I agree that cultivating a hard stare is very handy for survival in public. In my home things have improved since my stress levels reduced and our lives are more settled. He used to react to my stress, now I am calmer and able to diffuse his anger better. I also found that normal punishments did not work: the naughty step was a disaster! Removing his DS or Laptop had an effect, sometimes positive, but sometimes violent... Certainty about expectations and daily schedules have also helped, and just not doing stuff he doesn't like. Glad things have improved for you Rachel, hope it continues.

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  12. Had a few experiences with Sophie (she is not autistic but has paediatric medical traumatic stress) before her stress related disorder was diagnosed. She was often labelled as having bad behaviour, we were often frowned upon as being bad parents etc

    It hurts, it really does.

    If you retaliate you are frowned upon even more and if you put up with it, it gives them the green light to continue to point the finger of blame right at you.

    The so-called experts need educating from the real experts. The parents who deal with these situations everyday.

    Don't even get me started on the general public! I never realised how ignorant most of the population are. People used to point, whisper, and come back for a second and even third look when Sophie had her NG tube. Often you can ignore it but ocassionally I admit I have made comments.

    People forget you are human with feelings, which are often even more exaggerated because of what you have to deal with everyday. Eventually you become hardened to it but really, in this day and age, should we have to?

    I cant begin to imagine what you have to deal with on a day to day basis regarding Lyla's behaviour, but you clearly do an admirable job with such grace.

    Embrace those that take time to care and understand, and the rest, well if they cannot be educated on how to interact as an adult then two fingers up at them everytime.

    Glad things have improved and long may it continue xx

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  13. I'm one of my own harshest critics - why didn't I read the signs? Why didn't I predict a problem? Why don't I learn? But of course I never did, because 'next time it'll be ok'. Thank you so much for posting this.

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  14. Oh I agree with you on too many points to enumerate here. I'm so with you on not wanting to advertise my child's autism to every passers-by...hence my mocking of the "business card" concept. I shouldn't have to do that to get a stranger to act humanely towards me.

    So glad that you found me so that I could find you. I was about to be worried about you drinking wine at this hour...until I realized you were in the UK! I'll be joining you in a few!

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  15. Im glad i didnt see that programme or i would have pelted my tv.
    The CBF have been my saviour.

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  16. I will try and keep it brief and I would point out that I haven't watched the programme.

    There are always so many options at home. It's outside, in public when everything becomes impossible. I can't tell you how often we've experienced similar situations [although to be honest they're less frequent now that they're older]

    However, I'd like to mention something which really might help. This is not to rub salt in the wound [I hope] but more to advertise [not sure if that's the right word - promote perhaps] a scheme we have here provided by the local authority called Crisis Support Services.

    What they do is have a hotline that you can phone at any time and the social workers will come to wherever you are to help. In our case this is brilliant because I usually have both or all three children with me which can make it especially difficult to manage. Having another adult who understands the situation to either look after the other two etc. will be wonderful.

    At the moment we're at the stage of building a relationship with the social workers who come to the house once a week to play.

    So one day, in the future, when they're even bigger than they are now, our family will be in the fortunate position to be able to ask for help and someone [who we know] will come.

    I can tell I'm starting to ramble - so much for the brief - but it may be that there is a similar service where you are. I didn't know it was even available here or I would have signed up years ago.
    Best wishes

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  17. This service sounds truly amazing- it's exactly what I wish for- almost a fairy-godmother type thing! Thanks for so many comments, it makes me feel glad that I'm not alone- but also sad that we all go through this....

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  18. Thank you so much for posting this. As a Mom who has has the police called, social services heavily involved, and now has two children in residential care... this hits home. Feeling no support, no place to turn, and the safety of my other three children , spouse, and I in constant jeopardy; I felt I had no other choice. After they were placed people came out of the woodwork, "We are so glad you did that we were really concerned about everyone's safety..." blah, blah, blah I asked where were they when I needed help? Their general response, "We didn't know what to do and were to afraid to ask."
    The same social workers who judged us pretty harshly are now calling, "We were wrong. Their behaviors are escalating. How did you ever do this at home? We need a full team here."
    No matter what choice I make there is always the, "What if..." and it is compounded by all the cheerful blogs I read from people who appear to laugh through their day and seem to know what to do. I treasure those who "keep it real". All the kids in residential care came from somewhere, but those parents seem to be silent. There is a huge stigma and it already hurts when you poor every minute into Motherhood only to be branded a failure by ignorant bystanders. I shouldn't care what they think when I am trying to do the best I can for my children... but I do.
    Do you mind if I post this on my blog or link to it? It was something I was going to address, but you did it so eloquently.

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  19. My son too has violent outbursts. There's no one in the family (mom, dad and sisters) that he hasn't made bleed and/or cry. And yes it's embarrassing, it's embarrassing to talk about and it embarassing when others see him acting this way. I hate it most of all because I know him to be a loving funny sweet child. But the meltdown takes him away. I'm also scared for the future.

    We have seen quite a bit of improvement through using operant conditioning, labeled praise, rule violations, correcting in a neutral tone, and social skills classes.

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  20. Hi Rachel, I work at Contact a Family, a UK charity providing advice and support to families with all disabled children. We have been asked to write an article for SEN magazine about behaviour in children with additional needs, from a parents perspective. I'm looking to speak to families whose children sometimes display challenging behaviour about their experiences - good and bad - and any tips they can give to other parents and education professionals about ways to support children and their families. I completely understand if this isn't your thing, but if you are interested I'd love to hear from you - elaine.bennett@cafamily.org.uk or 020 7608 8741.

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  21. @Melanie I almost wept when I read what you'd said- it's unbelievable that support for us is so woeful. And of course you can link to me here, you are more than welcome :)

    @Karla I think you make a really important point and that is that we as parents are also privileged enough to be able to see the lovely side of our kids too- the thing that makes it all worth it :)

    Thanks @Elaine- any publicity for this is really helpful

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  22. What a wonderful post. It's a very good point--Why should you explain? I often feel compelled to explain my nephew's behavior by telling people he has autism.

    My nephew likes to water the yard with the hose. My landlord disapproves and has forbidden him from doing so, because it makes the yard "muddy." From our perspective, it is a harmless activity that my nephew enjoys so, so much. We use letting him water with the hose as an incentive for him. It sucks that people are so judgmental and intolerant. He really teaches us to be tolerant and float little stuff without getting in a tiffy all the time.

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  23. @sciencebird- thankyou for your comment- I think you're so right to continue letting him play, it's all about other people's problem, not your nephew's...lovely parting thought :)

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