Monday, 7 March 2011

Walls are not hard enough

There are many forms of self injurious behaviour (SIB). C has tried lots over the years, biting, scratching, pinching, eye poking, hair pulling to name a few but non have worked so well for him as banging his head.

Not much research has been done into head banging – I know I have been looking for over 21 years! But we do hear of the accumulative affects it can have on boxers,  footballers and music head bangers.

20% of babies head bang the majority grow out of it. C didn’t as for him it serves a number of purposes. Expressing feelings. Communicating a need - gaining control because of the actions of others, something in his environment, to feel grounded, distraction from sensory pain, distraction from a health pain, emotional pain, lack of self-esteem, self-confidence, expressing fear, frustration, despair, anxiety, anxiety exposure, pressure, avoidance, wanting something, releasing adrenalin or endorphins (feels good!). Etc. C of course is a person first and not a collection of behaviours/labels.

I realised very early on that because of my mother’s instinct to protect my child from pain I would give into C’s SIB and other challenging stuff rather than trying to teach him other coping strategies/ways to communicate. At the time it was easier – for ME. But I realised long term this was not the right route to take for C. In those days local SLD schools did not have enough knowledge, so I fought hard to get C into a specialist school. I am very glad I did as over the years with consistency, understanding and hard work C has made huge strides and we don’t see many of his childhood behaviours now.

Because head banging for C covers so much it is not always easy to know what he is trying to tell you. And its not for lack of him trying. All behaviour is for a reason. It’s a coping strategy a way of communicating, but C does rely on others to work it out and then sort it out. And because we don’t always get it right as we literally don’t know what he’s trying to tell us ‘we’ end up shaping his behaviour. "Suit you, sir?" 

As C has become older, bigger stronger so his need to find hard surfaces to hit his head on has increased. Possibly as his skull has thickened where he hits it? Or possibly the sensory pain from his environment has increased for him? Or he is less tolerant as to the speed we can work out what he’s saying? I don’t know.

'Autism is anxiety looking for a target' Tony Attwood

Doors are not hard enough – they give 

As do tiles

As do walls

C now targets sinks and door frames as they are solid.

We are looking at how to make door frames safer - its not straight forward because of fire regs.

C won’t wear a helmet. He cuts his head open on the edges of door frames -  but won’t let anyone cut his nails. Shows how diverse sensory issues can be.

It is very frightening this need to escalate. And we must be careful not to allow our own fears to shrink C’s world – it’s something C and I have worked hard on over the years to open up.

So we need to continue working together on helping C learn other coping strategies, choices and ways to communicate his needs. C is fortunate he has a team to help him and I am a cog in 'Team C'. ( Carers are now getting better recognition as expert care partners and valued as we have historical holistic knowledge) We continue building C’s community and our understanding.    


Kelley @ magnetoboldtoo said...

'I realised very early on that because of my mother’s instinct to protect my child from pain I would give into C’s SIB and other challenging stuff rather than trying to teach him other coping strategies/ways to communicate. At the time it was easier – for ME. But I realised long term this was not the right route to take for C.'

Don't you DARE. Don't you dare start taking blame. I look up to you, you are my idol for when my boy is your boys age. You give me hope and strength. Don't you DARE take blame for something that you did out of love and concern for your boy.

I wish I could hug you right now.

Casdok said...

Hi Kelly – Im not taking blame and I have no regrets as I chose the best options I could for C.

wishihadakarmaanghia said...

Wow - that escalation must be hard to watch as a mum. And very frightening. Sensory stuff is totally baffling - particularly when it's obviously so vital to a person's ability to function. As you say "all behaviour is for a reason".
Sounds like you're doing all that you can, Casdok. I hope that C can find a way to teach you what it is his head banging is saying. xx

Anonymous said...

We only ever do what we feel is best for our children. Where autism is concerned, no one can be absolutely sure because not enough research is being done to help people deal with it.

As you say, C is a person first and foremost. I just wish society would see through the labels and behaviour issues before they judge.

CJ xx

Akelamalu said...

I can't imagine how hard it must be for you to watch C do these things that can cause him so much pain. :(

farmwifetwo said...

I remember being told "no child will ever hurt themselves head banging"... Yeah... ok. I also took one look at that and said "not in our world".

It took he was 8, except when he's extremely annoyed he'll go for door jams (but it hurts now without the callus... and no I don't sympathise).

It fell under behaviours I could not live with. I contacted those that should be able to help and they told me they didn't have a behaviour program (beyond ABA which he didn't qualify being "mild") but they would come and tell me what I was doing wrong. After having had ABA in our house I said "No thanks". A lot of speech therapy, losing toys/tv for periods of time until he settled down, being simply picked up and moved to the sofa where whe could not harm himself, discovering that he was severely claustrophobic so time out wasn't working and making it worse - so he lost his fav stuff but could play with something else or go outside, and risperdal.... it stopped.

I'm not convinced aggressive behaviour is communication. It does tell you they are mad... fine... but I had this dread of a teenager bigger than I am hitting me... and that wasn't going to happen.

Good luck with it... I have no answers since I started with a child with non-verbal mild PDD who is now "mostly normal". My severely autistic one is not aggressive.

kathleen said...

It is a form of communication..I think back to only 8 years ago-there still wasn't enough information, at least where I am. My son did stop hurting himself. Now he is a mad stimmer. He tells me that it makes him feel good-so I think that you are on to something with the endorphin release..especially when all the world is overwhelming.
I don't know if you tried this or not. But, in our home supply stores they sell rounded foam.(it comes in rolls and is covered in vinyl so it doesn't shred) It is made to fit over the edges of things like window sills..countertops etc. It would not take away the hard feeling of it but it would blunt the edge...

Happy Elf Mom (Christine) said...

I have a teen who bangs his head and hits himself when he is very mad as well. Furniture also gets tossed about. It is no fun at all. The frustrating thing is that he is verbal but it all goes out the window "next time." You'd think if one could speak with the patient and work out solutions etc. the behaviour would decrease.

Well, no. So I don't doubt that you are getting all the communication cues that C is giving and the best you can do at present is change the environment as well as you can. :(

Queenbuv3 said...

It must be really hard to watch your son hurt himself in this way. Our has bitten chunks out of his hands and upper arms when he is severely upset by something. He has learned that he can't do that and now will only bite hard enough to leave a mark but not break the skin. He has started pinching his cheeks really hard. He will also grit his teeth and shake his head when distressed. My son has Echolalia and some verbal skills, can use PECS to a small degree.

I agree that all behavior is for a reason. For my son it is a form of communication.

My heart goes out to you because I know how hard it is to watch your child hurt themselves and despite your best efforts they continue to do it. All we can do is keep trying to give them more appropriate ways to communicate and regulate their emotions.

We all make mistakes raising our children, we do the best we can. Don't waste a second blaming yourself for anything. All we can control is what we do today :)

Casdok said...

The issue with fire doors in a residential setting is they have intumescent strips in them, in a fire this expands against the frame and creates a strong seal against the frame which prevents smoke getting in the room and provides a fire haven for about 2 hours – this cannot be compromised in any way hence we can’t put ‘anything’ on them (I tried)
So I asked for the edges to be sanded – to blunt them as you suggested - which they have done but it’s still not enough as would also compromise the seal.
They are now looking at different types of fire doors.

Usethebrains Godgiveyou said...

I thank GOD I never had to deal with this, because I knew of it when Ben was very young, and it scared the hell out of me. One time, at age 2, he bit his arm while waiting for his Daddy to come home. Later, when he was about 15, he mentioned he was going through extreme anxiety and did bite himself, and found relief. If there were a drug for anxiety that only nipped the cascade in the bud before it became full-blown, and thus necessarily expressed. It seems our kids have an emotional liabilty, like a car racing from zero to ninety with no brakes.

I wish I understood and could help.

Green Girl in Wisconsin said...

Oh how awful--his poor head--your poor heart.

Rose said...

Thanks for this – does put what i deal with into perspective.
And I now understand why you cant cut his nails!

Autism Mom said...

Thursday last week I witnessed an event that put me in tears. A boy at my son's school who I know to be self injurious because I have gotten to know his mother was sitting and waiting for his ride home. He was rocking and vocalising but no words. He is completely non-verbal. The aide repeatedly stated "you are alrght" and it was clear that NO, he was not. He then started to cry the silent cry as he continued to rock furiously. Again, the aide said, "You are alright" and he responded with a hard slap to his face. Full force, closed fist, no holds bar kind of slap. She grabbed his hand and offered him papaya which was left over from the lunch he refused to eat earlier. (clue #1, ???) He stopped rocking for a second only to bend over puting his head between his knees both hands clasping the sides of his head (clue #2, maybe???) She repeated again, "you are alright" to which I responded, "___, you are not alright, are you sweetheart" He looked up at me for a moment with his red face, completely soaked in tears. My son came into the lobby which is always my cue to get up and get moving.

I didn't know any more than the aide what was bothering him this day but it was clear that he was not "alright" Maybe he was frustrated for having to wait for his ride, maybe the environment during the day became very loud as it does quite often at this specialized school. Maybe he has a headache, maybe ___, maybe___ ?? :(

Deborah Carr (Debs) said...

I do hope you're able to find a solution to the fire doors/frames.


Ron said...

Hello Dear Casdok~

My close friend in Florida (who you've heard me speak of before) is also going through this right now. Her son just turned 22 and like C, his strength is getting stronger.

I'm so happy to hear about the holistic knowledge getting more valued.

Sending you and C and BIG hug......

((((( You + C )))))

X to you both!

Lizbeth said...

Thank you for putting this out there. I can see I'm not alone with this...

Yuji said...

How frightening indeed. My heart is with both of you as you continue to work on other coping strategies.

Jayne said...

My Aspie boy is headbanging and tossing furniture, (is verbal, too) but all we can do is ride it out and wrap our arms around him when he's done.

secret agent woman said...

Wow - how scary and heart-wrenching to see your child trying to hurt himself.

Maggie May said...

It must be terrible to have to watch C do this to himself and to the property. I would be beside myself.It must be so frustrating to him not to be able to communicate.

Sensory, things do come into it a lot. I have noted various things that my grandson likes/dislikes intensely.C's nails make me feel all goosebumps, as that is one of the things that goes right through me (long nails.) He doesn't chew them.

I do hope that someone will find a way through this nightmare.
Maggie X

Nuts in May

Niksmom said...

Despite the fact that I *know* it's communication, my heart breaks a little bit each time I see my son engage in SIBs. I cannot fathom the pain you must feel and the protecting of your own heart you must do to help C weather and emerge on the other side..even if you don't know what he needs.

Sending you hugs and so many good thoughts. Wishing for easy solutions to keep your sweet C safe.

Gina @ Special Happens said...

I obviously know how differently things feel to me than they do my son, but imagining him banging his head against a tile floor, kitchen sink, wall or door....I cringe. I couldn't stand the pain. Watching my son bite himself or bounce his head off the sofa repeatedly is hard enough. I can't imagine what it takes for you. I hope you and C can find a way to relieve this or make it safer, soon.

E said...

You are one of the bravest strongest people I have ever come across. I aspire to face my own challenges with half your grace and aplomb.
You are brave and wise and I want you as my mother in my next life

Rachel said...

Sending you and C good wishes, sensory issues are so complex and SIBs are awful to witness as a parent :)

Fiona said...

Excellent post. The more I read your blog the similar J and C seem. J is only 9 but head banging is something we had been contending with now for 2 years. He seems to be controlling it himself to some extent, often content to hit his head with his fists. I never want to see the day it escalates. The photos chilled me however I identified with the situation you and C find yourself in. xxx

Anonymous said...

All I can say, as I have followed you down the years, my friend, you are an amazingly tough human being.

Anonymous said...

I was wondering Jen, if you've ever tried anti-psychotics to help with his self aggression? Just a thought. Katie takes risperidone and neuleptil now, both in low doses and it has helped. I've also just started working on a brain injury unit and there they also use beta blockers.

I'm not recommending you do or don't, just more nosy than anything. His poor brain must have had a tough time over the years.

As an aside, I had watched that video about behavior management that you had recommended here. I'm trying it with Katie, mirroring her behaviors and her feelings. It does seem to be helping, of course, it helps if I'm not tired as well. I'm working on acknowledging and naming her anxiety and fear in the hopes that she will have a better understanding of her feelings and be able to name those feelings to let others know, instead of acting them out. Of course I still act out my own anxiety and fears so I don't know how much she'll learn from me:)

Hope you're well. Take care. Deb

sharon Morris said...

This post really impacted me. My son is only 2 and ocassionally engages in gentle head banging, hair pulling etc. You are a couple of decades ahead of me and therefore your wise words give me much thought for deliberation as to how I approach this. And several other issues I have been avoiding. Thankyou so much for sharing your knowledge.

Looking for Blue Sky said...

I don't know how to comment on this..I have a horror of head-banging. Especially as I have a daughter with brain damage. My aspie boy had no sense of balance when he was little and fell and banged his head far too many times. It was terrfying. I don't know how you live with it xx

Casdok said...

Thanks Deb. I am very cautious about this as a few years ago when C's head banging was again out of control we put him on anti-psychotics – and it turned out he was ill and just needed a course of antibiotics. So I would rather address the cause. But we don’t know what it is so yes am beginning to think along those lines.
Really good to hear your having some progress with Katie :)

jazzygal said...

Gosh Casdok, what an incredibly difficult situation. I have no words of wisdom just of support/comfort. C's head-banging is for varied reasons as you say so that makes it so much more difficult. Has it also become a habit too, I wonder?
You and the wonderful Team 'C' are doing an amazing job and I hope you do come up with some solutions that even reduce C's need to head-bang.

xx Jazzy

Paulene Angela said...

Thanks for sharing this information. Next month I will spending a month in a special unit for work experience, so I will see if I pick up and info., although I am sure you have been investigating exhaustedly for years.

It's true you and the team are doing an amazing job.

Love and Hugs xxx

Childlife said...

Casdok - Thanks so much for stopping by my place the other day, it was nice to hear from you again.

I've been rather introverted of late and should make more of a habit of dropping in on you. I'm always inspired by your positive outlook.

My kiddos both have some sensory issues that we have had to work through (and continue to work through) and I love the way that you convey in this post that it's a continual process -- when things stop working, you move on to new options.

It's tough -- just when you think you're starting to get a handle on things, they throw you a curve ball. Thanks for being such an encouraging example of persistence.


Unknown said...

Oh my goodness, that must be so frightening for you, so difficult and painful to watch. Poor guy, I hope you find solutions to the door frames. xxxx

Anonymous said...

Have you tried getting C's attention and then banging your head? I wonder how he would respond?

Casdok said...

I have actually - as i have been doing Intensive Interaction with him. But as yet i have not found a way to reach him when he is this far gone but am certainly trying.

Anonymous said...

I replied in the previous post about putting my 3 yr old on respiradone. We've found when we tried to cushion his head banging he would move over to find an even harder spot. Sometimes it was a release for him when it was just one bang. He just needed to bang his head hard, really hard over and over again. He was frustrated but it was also a compulsive need and I could see in his eyes that he didn't really want to do it.

When he got his third diagnosis of autism and this was with the development pediatrician, we thought she was going to shove medication down our throats as the key. But she said when we were ready or if it became necessary to let her know. Before our appointment, my husband and I came up with some "rules" as to when would we consider medication and it came up to if it drew blood, or if it left a huge lump, if he lost consciousness or if we had to take him to the er. Any one was enough for us to consider medicating because he is soooooooo strong and soooooo big for his age.

I am physically limited and have chronic pain and I can't afford to be hurt by my son and he is only going to get bigger and I am so worried about puberty. He is just 4 now and has been on Respiradone since October and he is doing well. Headbanging stopped and he actually feels pain when he does it. Lately he started smacking his face again and screaming when we make a request of him that he doesn't want to do. It is hard not to give in because we don't want to see our babies hurt even if they are the ones doing it to themselves.

Another thing that he just can't handle anymore is getting his hair cut with the clippers. He has been getting his hair cut with clippers since he was 6 months old and was used to it but now he cries like his daddy is torturing him. It is awful and I want to cry with him but he also doesn't want his hair combed so his hair gets shaved off. It used to take the two of us to cut his nails and toenails when he was a year and half and he acted like it ruined his day! We even tried the suggestion of cutting his nails while he was asleep or while nursing. Nope, he caught on quick. On the medicine he also stopped biting his nails and can tolerate us cutting his nails now.

Anyway, SIBs is the hardest thing to deal with my son. I love him to pieces and we worked so hard to get pregnant with him. I don't want him to suffer and I wouldn't want him "cured" or "healed" from Autism but I should would like SIB to be removed from him. In a way, the Respiradone has but the inclination for the behavior is still there and must be dealt with. I worry what will happen if my husband and I die, who will care for him? Not many can deal with his SIBs.

Mom of 12 said...

I had a friend with an autistic grandson. After our 8-year-old was diagnosed, she told me we needed to be prepared for the anger and try to help him learn to control it. Her grandson had punched a teacher, overturned get the idea. This method worked for us. When our little guy got out of control we would start assigning hard jobs (unloading a dishwasher, cleaning a room, scrubbing a sink, etc.) If he continued to act out I would calmly assign another one. Often we would get to 10 jobs before he would start holding it together. Then he would start working. If he did well and kept himself in control I would start taking the jobs off the end, but there were many times it would take him 4 or 5 tasks before he was feeling remorseful. My son is 17 now and we rarely have trouble with his temper. Not that he is perfect by any stretch and his Autism is only in the mild to moderate range, but at least he isn't punching his teachers.
Best wishes and prayers for you all!

Michelle Morgan-Coole said...

Wow, you deal with so much and always (seemingly anyway) with such grace and dignity (for both C and yourself). I've always admired you for that.

I won't say "I don't know how you do it" because I've heard that one once too often myself but... we all do what we have to do but some families certainly do have it harder than others.

The Blue Jay use to be a headbanger (and I often found her going out to the kitchen to do it, no doubt because it was harder than the carpet in the livingroom). She was also a biter (of both herself and others). We have gotten rid of most of that over the years (with the exception of the nail biting) but recently the biting has started again, along with slapping her head. She is quite high functioning so it seems so strange.

But an outsider to our family pointed out today that there has been a lot of turmoil in our home for the last few months (my husband lost his job in November and that has resulted in circles and circles of difficulties) and that is when this behaviour first started. Now it is escalating. So, the Blue Jay's "normal" reaction to a sense of unstability perhaps?

Jen Strange said...

oh wow, those fingernails! My son is a nail-biter at this point - he likes them very short, like I keep mine.

How troubling to see the self-injury head-banging. Jake has phases where he runs and jumps at things - he has put holes in walls and broken our couch - because he needs that deep pressure input to his muscles. Sensory issues are, indeed, mysterious and troubling.

Thanks for coming by my blog. Your blog is amazing.