Thursday, 14 July 2011

Access to health

Drowning in a tidal wave. Rapidly repeatedly smashing his head hard onto a solid object trying to cause more pain to block out the pain he is already in - giving himself something to cling onto – to find his way back.

This is what it looks like to me. A tidal wave of pain from what though – I don’t know. C needs investigations to rule out health issues.

His desperate eyes boring into your heart silently screaming for you to help him. But you can’t always.

I wrote about this back in Feb. The words ‘critical ‘crisis’ ‘life threatening’ have all been used and yet C has only yesterday got to see the right Consultant who would prescribe meds and a referral to see a Neurologist. Meds might take yet another week – ‘as we are busy’.

This isn’t from lack of trying by me and C’s home and The Challenging Behaviour Foundation. We have been chasing – we have been repeating ourselves to different people and we get moved onto the next.

Fills me with immense frustration, despair and disbelief. Non of which is about autism but the system. The childrens world was very different.


You read and hear about valuing people people first, respect, dignity. So why has C been passed from pillar to post no one seemingly wanting to take responsibility. And in the meantime he is seriously self-injuring nearly every day. He is telling us loud and clear something is wrong

C’s next head bang could be his last. 

Has no one learnt any lessons from Mencaps Death by indifference and the inquires that have followed.

Facing Autism in New Brunswick picked up on this post. You can read the discussion here..

49 comments:

Fiona said...

This is a frightening and distressing situation for C and all those that care about him. I don't understand why things can't be made to work quicker. I really hope that someone acts soon to find out why C is doing this. Fiona xxx

Julie L. said...

Sending hugs. Hope C's medical needs are attended to soon. Sounds so frustrating and stressful for everyone involved.

Joker the Lurcher said...

i cannot imagine how hard this is for you. i hope things can move on a bit soon and you and c get some help. hugs.

Crystal Jigsaw said...

This is absolutely dreadful. I am ashamed of our NHS and their disgusting inability to cope with disabilities of C's level. Something HAS to be done to change this. It's as though they don't know the answers so they brush the questions under the carpet.

CJ xx

wishihadakarmaanghia said...

Horrific, Casdok....am so sorry that C is going through all that pain and not receiving the treatment he needs. Awful. Really hope they stop "being busy" and help him SOON xx

Mary E. Ulrich said...

I am so sorry. Your pain and headbanging against the indifference comes through. My prayers are for both you and C.

sharon said...

I am crying at this. I feel the sense of despair in your post and can only begin to contemplate the desperate feelings that must overwhelm you, and more importantly your son. I wish there was something, anything, I could say to offer comfort. I can't I know. I am so sorry.

Happy Elf Mom said...

If there is anyone we should be writing to to help, please tell us!! I thought you were silent because C was in a clinic or being moved or helped in some way. I am sorry I didn't follow up with you... maybe I should always assume the worst with these medical people!!!

Prayers going up for C, and many kind thoughts to your whole family as well. I wish he were comforted by hugs!! It's hard to know what to do. :(

Ron said...

*shaking my head in disbelief*

UNbelievable, Casdok.

My heart aches at reading this post.

"You read and hear about valuing people people first, respect, dignity. So why has C been passed from pillar to post no one seemingly wanting to take responsibility."

Their indifference is appalling!

Sending much love and good energy your and C's way....

((((( You and C ))))))

X to both.

Akelamalu said...

It is appalling that you can't get the care C needs.

Sending positive thought and energy to you. I hope you get what C needs very soon. x

Joeymom said...

Holy cow, I hope this gets sorted out ASAP. This is ridiculous! If he wasn't disabled and was having pain, how fast would he be seen?

Yuji said...

I am so sorry that C has to suffer all that pain, and that you have to endure the agony of your child in such a condition with no one helping. My heart goes out to you.

Tired Mom said...

There's nothing new I can say that the others haven't said already. I will sincerely pray that you and your precious child find the help you desperately need. Hang in there and good luck!!

Leslie: said...

Right away I thought "migraine" but it could be even more serious. He could be hearing voices. Whatever it is, you MUST get to the root of the problem - you're a fighter! Don't stop until you find someone to help him. I am so sorry you are both going through your own separate pain!

Lisa said...

Hi jen, bless your heart, just seen this, just to say i know exactly what you are going through, get the hospital eye dept to put the special drops in his eyes , which allows them to see everything, just to rule out eye probs. In my opinion My C was head banging becuase his retina was becoming detatched and only stopped once it was done, horrid as that sounds, big love to you.

Casdok - But how do you do this??

Anon - It is absolutley vile, like watching your child trying to commit suicide with your hands tied behind your back. .If and when he is knocked out for an MRI get them to test the eyes too. You would think/hope that the home would have a psychiatrist who would visit rather than he go to them. .I always wanted him to be knocked out and a full body MOT scan and bloods done to rule out any health issues. I do hope it eases its a horrible place to be in, thats why us parents appreciate even a tiny smile when it happens x

Maggie May said...

I agree with Leslie. It might be migraine, hearing voices or any number of things. How do you know if he can see properly? He might be so frustrated that he can't tell.
Has he ever had any scans under sedation?
How you could tell what was wrong I do not know but you must be so upset to see him doing this & having no answers.
Hoping for answers soon.
Maggie X

Nuts in May

Tanya Savko said...

I can't get over this. I am so sorry to hear of it. Know that you and C will be in my continued thoughts and prayers.

Casdok said...

Maggie, Last year when C had a GA for his teeth we asked for scans then and they refused.
This time consultant has also refused as 'theres no point' with 'someone like C'. Am hoping when we get to see the Neurologist he will think differently.

Lizbeth said...

I don't understand this and my heart goes out to you. The only thing I can add is having worked in a hospital for years in a number of different positions I can tell you the squeaky wheel gets the grease. Its not right and I know you probably already know this but thats how I've seen it played out over and over again. Granted that's just what I've seen and can't vouch for other areas but, I don't know where I'm going now...sigh.

My heart aches for you. I hope this gets figured out soon. ((hugs))

bbsmum said...

Nightmare. ((hug))

Honeysuckle said...

Oh, I'm so sorry, it must be really hard to see C in distress and be unable to help him.

Looking for Blue Sky said...

I read this earlier. It's just so horrible and inhuman I didn't know how to comment. I have no idea how you cope with seeing C so desperate and not being able to get him the help he needs quickly xx

Paulene Angela said...

Extremely difficult for you both. As a mother this is nightmare scenario, really slow mental torture.

Would the hospital/medicals help more if you signed a non-disclaimer first? I mention this because in between all the crap of health and safety it all boils down to money.

I think you need to put legal pressure on your health centre, this is a scandal that could be front page news. How many other young men/women are suffering in the UK because qualified medical staff are terified to make a descision.

My heart is with you to find a quick solution to this.
px

Anonymous said...

You should do a link to Harold’s blog. I do love your answer.

I get what you are saying here.

Why should C have to wait to get any treatment just because C can’t explain himself and say what treatment it is he needs.

Because you have to do more tests and it’s expensive - that’s why!

It’s all a load of rubbish when they say it’s because it would be distressing for him.

Isn’t carrying on in pain more distressing for him. No one listening - more distressing for him?

jazzygal said...

This is so incredibly frightening and frustrating....and downright bloody disgraceful! Makes me so mad to read stories like this... it's just not right. What kind of an excuse is 'we are so busy'?

I feel for you and C and I do hope someone, somewhere listens and does something thathelps.

((xx)) Jazzy

WilmaJean said...

Your blog is so full of information, I believe you will have more followers soon. By spreading the word, you are doing a great service to us all. I hope you can inluence the "reforms" that are important.

Flannery said...

I'm so sorry. I hope you get some help soon. It must feel very isolating, and I know we all wish we could help in some way.

Becca said...

I'm so sorry C is having such a crap time. Is there any way to get some painkillers into him at all? Even just paracetamol or nurofen to take the edge off...

Only other thing I can think of is to attempt to sedate him somewhat in the hope that it would enable him to cope with experiencing pain better while you work on finding out what's wrong and how to fix it.

Some of the commenters on that thread are utterly vile - so rude, and so arrogant.

I'm so glad that C has you to speak for him. In the end that's all that matters.

Apples and Autobots said...

I just wanted to offer support. I pray you will find the cause of his headbanging soon.

nitebyrd said...

How terribly awful this must be. Not only gut-wrenching for you but so painful and disturbing for C.

My heart goes out to both of you. I hope that he will get the proper help and care quickly.

(((hugs)))

Sockitmama said...

When my son was a headbanger, I lived day-in and day-out worrying and wondering. Please don't stop searching for answers. You will be in my prayers.

Debs Carr said...

How traumatic and frustrating for you both. I do hope someone listens and takes the right course of action soon and give C the proper help he needs very soon.

Suburbia said...

That's disgraceful that you have both had to wait so long. I hope very much that the meds help C. I hope you both have some peace soon

Chris H said...

Blasted 'system'!!!
I hope by now C has had some help?

starrlife said...

Oh god. I am so sorry. That is the most terrible thing for a mother to bear. Damn those bureaucrats. a hug for you Casdok. I'll be thinking of you and your son.

secret agent woman said...

How excruciating to get lost in the shuffle of a system that doesn't care.

~Zurama Luisa Johnston~ said...

C.....It's been a while since I've visited your blog. I'm so sorry this is happening to your son!!!

What kind of pain do you think he is in? Is it his stomach, intestinal inflammation perhaps? My son used to bang his head also and addressing his pain.....stopped the self injurious behaviors. Unfortunately, I didn't find help for him with doctors or the state. I did my own research.

Don't wait for the state to help him!

My heart goes out to you, because I know just how you must feel. That behavior is so dangerous. God bless you C......

doodledaydream said...

this is awful for you both. Really hope that you get some help and answers soon.

DannJ said...

Casdok,
Thank you for this post and the last few entries on this topic about not just abuses directed at the disabled but also the need for what I think is a re-evaluation of acceptance and support for the disabled in society. I sometimes wonder if its because of harder times that it cause people to be harder and just less outwardly compassionate towards their fellow person or just a disintegration of our social acceptance of one another and ourselves.

I was wondering your family had every tried massage therapy for the little one and if so if it had proved up any results.

http://www.dailyrx.com/news-article/massages-autism-11342.html

This study said no substantiated benefit could be attributed to massage for autistic but in the blog community I have read of mixed results.

I truly hope you can find someone in the health care system that will initiate some care for C soon. Perhaps some type of viral campaign could be construed among your blog follows using a combination of twitter and aggressive letter writing to strike a cord with some one in administration, if by no other mean by embarrassing them and their ridiculous lack of mobility on getting C some urgent care. There are some very concerned followers and I believe many of their offers of help would be backed by action if we could get a game plan together.

Samantha Anne Hutchinson said...

So very heartbreaking, dissapointing and frustrating. Hang in there, dont give up fighting the system. You aren't alone.

angelsandurchinsblog said...

Feeling for you. As an aside issue with the NHS it makes me so angry that if you're seen then you don't count as a waiting list statistic. This is even if you're not seen by the relevant person, not seen for long enough to diagnose or help, or merely seen by an administrator. It shouldn't have to be such a waiting game.

MMC said...

Wow, quite the conversation/debate over at Facing Autism. I must say that at least some of the commenters over there truly do get you. I loved this comment:

"Do you see a person who loves her son unconditionally? Do you see a person who is doing all she can to stand up for the rights of those with disabilities? Do you see a person who striving to see if her son's needs are met?"

I don't have the same opinion as you do on whether or not we should try to cure autism, but it takes a lot of arrogance (and ignorance) for a person to characterize someone else as "attention seeking" or essentially in la la land just because they disaree with them. Given the extent of C's challenges, you have a real stake in the game and, in my mind, that makes your opinion just as valid as any other.

And it's too bad some pple can't seem to tell the difference between SIB and autism. First, you don't have to be autistic to engage in headbanging or other such behaviours, you only need to be non-verbal or otherwise unable to communicate your needs. The Blue Jay was a headbanger when she was little - of course I always tried to figure out the why behind it but at the same time, I (like you) tried to stop it, it is after all "self-injurious".

I do hope you can soon get some help with figuring this out Casdock. C has an amazing Mom but I know hearing that doesn't help you any when you can't seem to help him. And I'm really sorry for that.

Accepting and Embracing Autism said...

My thoughts and prayers really go out to you. I can't imagine the distress and frustration this must be causing you and your family. I have 2 boys who have ASD but fortunately they have never been head bangers. The hardest thing I have had to deal with is when my 8 year old High functioning Autistic son due to Anxiety threaten to kill himself and put a knife to his chest. He also got so angry at his younger brother that he jumped off the lounge onto his leg and broke his femur. I have now added you to my list of autism blog links. Will definitly come back and find out how it is all going. Sarah www.acceptingandembracingautism.com

Amy said...

Casdok; I am so sorry you and C are dealing with this. I happened to read on another blog about something with nicoteine therapy to treat individuals with severe self injury and I automatically thought of you and C. Here is the link to what I read.
http://www.autismseizureselfinjuriousbehavior.com/
I am not sure if you have already tried this, but it did seem to bring some relief to this young man. It seems like it would be easy enough to give him, I believe they just use your typical patch. The patch could irritate his skin somewhat, but maybe the head banging would lessen. :)

Jane Gregpry said...

Hi, Charlie at the CBF told me about your blog when we spoke today. Just become a follower & am looking forward to reading all your posts. I, too, have a very challenging, complex child. My daughter's 27 & in a privately run assessment & treatment unit being funded by the NHS. We are struggling with self-injurious behaviour too....& it seems to have evolved as a constant theme in my blogs.

E said...

I think of you and C often Casdok. I would love to hear how you both are doing. May your 2013 be filled with some joy and only a few little manageable sadnesses.

Sarrah aka Sashi said...

I also check back periodically, hoping for an update. I hope all is well!

Emma said...

So sorry. Hope things improve.

Autism United said...

This is terrible, I am sorry we didn't see sooner, may we share your story to our readers also. We need the message out there loud and clear, people have to hear our voices and help!