Tuesday, 20 October 2009

Challenging Behaviour

For me what has been the toughest - C’s Autism or his severe learning disability? Neither it’s his behaviour that is so challenging because of sensory distress that has shaped both our lives.

What struck me very early on in Cs life was the injustice/stigma he has had to face on so many levels because of his behaviour that has challenged and people don’t see that he is a person first doing the best he can.

I found this recently that I had written describing C’s early years. By C proofing the house, early specialist intervention and continued support, C has come a long way since then. It hasn’t been easy for either of us but I hope my blog is testament that you can get to a place where even with ongoing challenges life can be enjoyed.

Its 2.30 am. I am woken by the sound of head banging. He’s awake, I’d better take him down stairs before he wakes everyone.
I climb over the stair gate to be hit by the stench of smeared faeces. I trip on the ripped carpet, the curtains are on the floor. The woodwork is chipped from thrown objects and teeth marks. There are holes in the walls from his head.
How do I get him down stairs? If I pick him up I am I danger of being hit, kicked, bitten scratched and my hair pulled out. I go and get a biscuit and lure him out.
Now what do we do in the long dark early hours. He does not watch TV or play. I had better take him out for a walk – but that means I have to somehow get him dressed. I’ll have a cup of tea first. I’ll have to drink it standing up as if I sit down I am attacked.
Everything in the house is locked, hidden, stuck down or tied up. Anything he can lift is thrown, kettle toaster etc etc. I cannot take my eyes off him for a second. But I do to pour the tea. CRASH. My husband won’t be happy, it’s always my fault. He has put his head through the safety glass on the TV. I had better put his helmet on. I bend down in front of him – he knocks me out cold with a single head butt.

My son is only 3 years old.

I can’t take him to the shops or other people’s houses. No one comes to see me anymore. Neighbours cross the street when they see us coming. I am given respite but that doesn’t last long as they can’t ‘contain’ him.
He goes to an SLD school. They call me to pick him up as they can’t cope. They start restraining him.

My son is only 4 years old.
Using ABC charts (which is a bit of a pain, but did help me to understand) and Positive Behaviour support we were able to listen and help C a lot in those early years. And I learnt not to reinforce his behaviour with biscuits!! Or to kneel in front of him to put his helmet on. I found a specialist school for C with good SALT support as communication is the key. But C in his wisdom chose not to learn PECS or any signs as his head banging works so well for him. But sometimes he takes it too far and knocks himself out. So this we are still working on. And now as an adult a good PCP is the key.

"It is not a matter of what causes self-injury or what causes aggression or what causes stereotyped or repetitive movements but for each of these difficult forms of difficult behaviour, what does it do for the individual, what purpose does it serve for them in their life?" E. Emerson

I recently spent a couple of days with The Challenging Behaviour Foundation and met other parents of young people around C’s age. And even though their diagnosis varied they were all SLD with severe CB, the experiences and impact this had had on our lives and the paths we took interestingly were very similar. And most of our children had been subject to restraints both physical and chemical. Exclusion and seclusion, not only within the system that is there to try and support them but from family and friends as well. Despite all this what shone through was we all had a great sense of humour even though we were tackling a very serious subject.

The other thing that gelled us together is we had learnt to ‘play the game’ through networking (for me I sat on committees) and empowering ourselves with knowledge. (wish I had had the internet in those days!)

The Challenging Behaviour Foundation is expanding and doing some very important work and hopefully will be reaching more families and professionals. They offer a range of information and support . They have a very useful set of 4 DVDs which would benefit anyone who is starting on the challenging behaviour road. . You can phone the CBR helpline as they give these DVDs free to any families caring for someone with severe learning disabilities.
Their UK number is 0845 602 7885

C is still settling in well. He has had 2 months on his own in the home which has given the staff and C a good chance to get to know each other. A young lady has now moved in and as his routines are now established he hasn’t seemed to mind. However he still won’t let anyone near his nails, but I think when the day comes that he does, is when I know he has truly settled in.


BenefitScroungingScum said...

Thank you for such an informative blog. I often wonder how behaviours would change if there was a safe environment for people to live in w/out NT imposed restraints. Would behaviour remain so challenging or would we learn something vital not just about AS people but about the whole human race?
Glad to hear C is settling so well, it must be such a weight off your mind now he's in a happy, caring enviroment. Thinking of you both, BG Xxx

Anonymous said...

He's come such a long way, with your help. It may always be a challenge, some days more than others, but it's an amazing step you have both taken. It is something no parent wants to go through, but has to accept that they might. And your knowledge and experience can make such a difference.

CJ xx

Sass said...

I wish my nails were that strong. Sorry. I was distracted.

If the use of restraint in SLD schools surprises me, who knows what it made you feel.

Isn't it their business to be more imaginative in dealing with challenging behaviour?

Casdok said...

You would have thought so. And i would like to think things have improved but you still hear horror stories.

bobbie said...

Your devotion and perseverance has allowed your son to come this far. Love can overcome just about anything. Thank God for the internet today. It does help us in so many ways.

It's quite a road you two are traveling! I am so very glad that C seems to be settling in now.

Julie L. said...

It's fantastic that C was Ok with another resident joining the home. It's also great they gave him two months to adjust before bringing in someone else. Hopefully, he'll let someone cut his nails.

I'm glad that you have the Challenging Behavior Foundation and think it's wonderful that you are helping them out. : )

Beth said...

What an incredibly challenging life both for C and for you.
Being able to see your son as, “...a person first doing the best he can,” has taken you on such a journey and enabled you to help others in the process. Love, respect and determination can work miracles. You are an amazing lady.

Lisa said...

Having you those few laps ahead is such a source of inspiration and comfort to me Cas.
Being honest about the behaviour, but recognising what he is communicating, SO Effectively ! -no wonder he doesn't want whimpy PECS or sign when self harm works better, faster, sooner.
Please keep networking and contributing, it is only the influence of people like you that the state models will change.

and so glad things are going well in the new house. xx

kathleen said...

Thank you for telling your story..In the begining-when we were first trying to figure all these things out-I felt so very alone. Especially in my beliefs that my sons were people first-behaviors and actions second. (don't know if that makes sense) I am so thankful for finding blogs like yours-that are honest, at times hard to read, and yet all the time hopeful and joyful.

Deborah Carr (Debs) said...

I'm so relieved to hear that C is settling in well.

Thank you for posting about your and C's early years, I think you're an incredible mum especially when I think of the recent photos of outings you and C have gone on together.

mumkeepingsane said...

Glad to hear the new place is working out. I'm jealous of those nails. I hope he's comfortable enough soon to let someone clip them, though.

That sounds like a great organization.

Maggie May said...

I am so pleased that C is doing so well and I'm sure that the nail cutting will take place some how or other.
Oh that challenging behaviour........ I don't know what to say. It must be murder for the carer and I do hope that there is respite available though I wouldn't be surprised if people just had to cope best they can.

Thought provoking.

Nuts in May

MamaSkates said...

glad 2 hear that C is settling in well...i admire u deeply!!!

Akelamalu said...

It is truly amazing what one can achieve when you love someone that much. C is lucky to have you as his mother. x

Ellee Seymour said...

My heart goes out to you both and the daily challenges you both face. You are truly inspirational.

Green Girl in Wisconsin said...

Your blog is such a blessing, opening up a world I never knew about and increasing my empathy.

Kit Courteney said...

Sometimes I read your posts/facebook comments and think 'Goodness, now, just HOW hard a struggle have they had?'

And then you go and post something like this and I think 'Bloody blimey (that's the clean version), it's been SO much worse!'

I am both shocked and educated at the same time and I thank you for that.

Kahless said...

Wow. Dont know what to sa really. Exceptional post.

jazzygal said...

Fabulous informative post, as usual Casdok.

What an incredible and difficult journey you're both on....and how far you've both travelled.

Thanks for sharing. xx Jazzy

HelenMWalters said...

Glad to hear he's still settling in well x

John Best said...

Will you please wake up and chelate this kid? What the fuck is wrong with you?

Anonymous said...

He makes Katie's behavior look like a walk in the park. I think I would have done us both in if I'd been C.'s primary caregiver.

I'm going to take a look at the CBF, thanks for the info.

Glad to hear C. is settling. Take care.

Tanya @ TeenAutism said...

Very glad to hear that C is settling in okay so far, and I hope things continue to go well. Thank you for sharing such helpful information and links, but more importantly, for sharing your experience. I learn so much from you. Thinking of you and hoping you are well!

Green-Eyed Momster said...

You are one strong woman, Casdok, And, C is lucky to have you as his mom.

Big hugs and love for you both!

secret agent woman said...

He really has made great strides, hasn't he? I'm so glad to hear he is settling into the new place.

Robert said...

I wish I had had the internet, known about the Challenging Behaviour Foundation, or even known anyone else coping with challenging behaviour during the difficult days of my son's childhood and adolescence! I still have a solid wood door with see-through cracks in it - the result of a bout of challenging behaviour 14 years ago...

For me, the worst consequences of my son's challenging behaviour were the effects it had on the lives of his 2 younger sisters while they were growing up. I'm really proud of the fact that they now regularly spend time with their big brother.

Cheri said...

I remember learning that I had been contributing to Zach's behaviors in the beginning. A lot of parents never want to see that they might be doing things incorrectly for a child.

I am glad C is doing well. It is hard for a NT to find their place in this world. I wonder if autistic people will ever be allowed to find there's? I sure hope so.

Chris H said...

Wow those nails are to die for! Hope he doesn't hurt himself with them. Its good to know he is settling in so well at his new home.

Happy Elf Mom (Christine) said...

I appreciated your post very much, Casdok. I am sure several parents in the UK are going to appreciate the support and help you've linked to. :]

I am almost positive that here, you're just expected to "control" your kid and/ or give him a good spanking. Yep. They do that in schools here, too. "It's good for 'em. Teaches character." :[

Paulene Angela said...

I’ve just been watching a beautiful documentary about one particular tribe of Indigenous peoples in Brasil, wishing to preserve their traditions. My mind races around thinking how my son would probably would have adapted to that way of life perfectly, rather than to this complex lifestyle of modern Europe. Do you ever have similar thoughts?

Anyway getting back to this post, wow I am challenged just reading about the younger years with C. I admit the head banging above all would have made me a nervous wreck. Really you are amazing for you determination.

Thanks for sharing this value knowledge, it will be put to good use as we do have one teenage boy in our group who comes under the CB umbrella and I dearly want to support him and his lovely parents.

I could not agree with you more regarding the aid of the internet, if only we had it earlier, and yes being able to laugh, we must never stop that.

Really happy for you and C that his move is going well.
Hugs. pxxx

JoyMama said...

Amazing post.

Amazing journey.

Thank you.

Club 166 said...

This post comes at an especially appropriate time for me, as our son is most likely going to get kicked out of his school soon because of his challenging behaviors. It's somewhat comforting to think that somehow, some way, we will get past this.

Happy to hear that C is doing well.


Corrie Howe said...

Thank you for being so encouraging and supportive of others. For me it is a great encouragement to know that others have gone before and can assure me "This too shall pass." And that we can survive..yeah, even blossom...in our outlook and sense of wonder and humor.


Wow you voiced some real insight into your situation. This is very exhausting and challenging behaviour and has been a danger to you, your strength is amazing! Your love and dedication for your son is admirable.
I haven't seen my son since he last kicked in my car, the difference is he can stop his behaviour but chooses aggression and destruction instead.

Suburbia said...

What a journey, you have both travelled together.

So glad he is settling well still.

Anonymous said...

Wouldn't you love to know what's going on in his head? I think it may be like being on an endless LSD trip. It sure doesn't seem like people with your son's degree of autism are having a grand old time of it. Mostly, they seem isolated and frightened. If you get your jollies from looking at people's feet and rubbing your shit on the wall what are you giving back to the world?
No, neurodiversity is a crock. We need a cure. If your son had the option of taking a pill that would make him "normal" I'm certain he would grab it like a drowning man grabs a life preserver.

DJ Kirkby said...

I had goosebumps reading this. I think you need to run workshops or write a book or something. xo

Honeysuckle said...

What a fantastic job you've done, you and C together - most people would've given up faced with that level of challenging behaviour at such a young age.
I find the use of restraint in schools upsetting, but I wonder whether that would change if my child (also no stranger to cb) were attacked? I think schools have to cover themselves and if restraint is the quickest way to keep everyone safe...? I don't know, but I'd hope it would be a last resort strategy.

Rebel Mother said...

This is an amazing post.

The early years are incredibly interesting.

A long road to travel, but with a bright light at the end. He is getting there, thanks to you.

Love RMxx

Kelley @ magnetoboldtoo said...

Love you babe. You are an inspiration.

And for Boo it is toenails. They grow around his toes and then eventually snap off.

And then he eats them. *shudder*

Ron said...

Hello Casdok~

Beautiful post!

You truly are an inspiration for us all!

Thank you dear lady.

Thank you!

So glad to hear C is doing well in his new surroundings

Love and Hugs to you and C.

{{{{{ Casdok + C }}}}}}

Anonymous said...

thankyou for posting that. I hope its ok to link to this post I think I'll be reading this again and again. There are quite a few things I can relate to but a lesser level. I'm pleased C is settling in.

Jayne said...

You so rock, Cas :)

Dr. Deb said...

I totally agree with you. In all my years of practice, it was never the diagnosis or the treatment that measured success, but rather the level of opposition or the challenging quality of behavior.

buffalodick said...

You've had a long life of this, and I'm proud of you..you never quit trying, or gave up..

lime said...

knocked out by him when he was 3, my goodness! you must have been so firghtened when you awoke wondering what dangers he may have encountered.

i'm so glad to hear he seems to be doing well at his home though and will rejoice with you when he decides he's settled in enough to trust folks with clipping nails simply because of what that act will indicate about his comfort level.

teeni said...

I can't even comprehend the range of emotions you have experienced in this journey that you have been on as C's mom. At first I was thinking to myself that restraints may have been necessary in the beginning only to protect C and others (especially as he was able to knock you out at only 3 years old), but I am learning that as a mom, I would be upset to have to see that happen to my child and would always be looking for better ways too. So your site is still opening my eyes and making me see things differently. I hate to be learning through your trials and tribulations but I think we (all your readers) are blessed that you share with us. You are always in my thoughts and prayers.

Amber DBTD said...

Wow, C at 3 is Jaymes at 3. Well, minus the headbanging. The description of his room was spot on for my son's room too.

Thanks for sharing ( :

Indi said...

Because I think you are an amazing mother, a loving human being, and that you write from your heart, but for your son who is unique and a nice young man... who has a mother...one in a million. So I have given you an award... because, I know you deserve it.

Jade said...

My friend.... you are beautiful, you know that? You might not, so I will tell you....YOU ARE BEAUTIFUL!

Your devotion, your concern, your forethought, your compassion. All so beautiful to see. I know it has not been an easy journey for you. It hasn't even been slightly fair, but your resiliency has gotten both you and C though the early years.

I can't wait for the day when I log on to your page and see a pict of C's hands neatly manicured.

So much peace headed your way my friend!

dawn said...

Hi girl, sorry I haven't been around much Life. I have to say I am always amazed by the strength you have reading your posts and what you have lived thru. I really just wanted to say hello and i'll be around.

Accidental Expert said...

I just found your blog and am so glad I did. I have an 11 yr old with Asperger's and we are still in the midst of challenging behavior, school and all the pains of growing up.

His twin sister has bipolar and ADHD, so I blog myself to help me maintain some semblance of sanity.

Look forward to reading more.

Herrad said...

Hi Casdok,

Hope you are doing well.
Came by to say hello and wish you a good Halloween weekend.

Ellee Seymour said...

I hope C continues to settle in well. You are so wonderful.

Anonymous said...

I am so pleased to read he is still settling in well. And the CB Foundation - very nice.


M said...

I just found this post and as usual I have to thank you for sharing it. For being realistic and loving your son and sharing the good bad ugly and amazing.

And for giving people such amazing information and resources. You are one of the good people.

And I'm so glad C is settling in. <3

Sandi McBride said...

I am reading this, and thinking wow, what a strong woman you are...I am going to say how much I admire you...as though what you are doing for C is something special. Then I think about my own two sons, and while they've never had the problems that C has nor put me through all the things that C's problems have, it hasn't always been easy and I find our common bond. It's love. No matter what problems, no matter what disability, no matter what challenge, they are our children, and we love them. So, I say to you my friend, your love is what has brought C this far. It will take him further, it will take him to the point where you will finally be able to relax and take a deep breath. It may sound trite and overdone, but in the end, Love does conquer all.
Warmest hugs...and I'd come have a cup of tea with you any day...of any week...

Rebel Mother said...

Hello Casdok. Only me again! Got an award for you at mine.

Love RMxx

Herrad said...

Hi Mother of Shrek,
Please come by my blog and pick up your awards.

Rachel said...

Hi Casdok- thanks so much for leaving a comment on my blog- I'm just starting out and it means a lot :) I really like your blog- I was especially drawn to this post as challenging behaviour has been a big feature in our lives too. It's good to know that we're not alone- it's not something that never gets talked about and I've found it's one of the most upsetting aspects of my daughter's disability...because what do you do??...you sound like you've been through some times with C, thanks for that link

Marla said...

The challenges you have been through and C are amazing. You are always an inspiration to me.

I can't believe how long his nails are. Mine would never grow like that even if I let them be. That must be a very sensory overload for him to have his nails trimmed.