Category: Disability

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What is wrong with a label?

What is in  a label?

If I had a £ for everyone who said that they didn’t want their child labelled, I’d be doing quite nicely by now thank you.   I have to wonder why we have such an aversion to labels, or names, or public affirmation of issues.   Many do accept the labels their children are tagged under, but for every one who does, there are many who don’t.

– Is it a Scottish thing?

– Is it a larger than life British thing?

– Is it one of those stiff upper lip Britishisms that has us refusing to admit that our children may “have” something.

– Might it be that we might be blamed for it if they do?

– Could it be that we are in denial and don’t want to admit there is something wrong with our children?

– Should it be that we ignore what is right in front of our eyes?

Isn’t a label a reason for people to call our children stupid, or thick, or spazzer, or idiot, or dumbo, or something else as equally offensive?

Perhaps denying that there is anything specifically wrong means that we don’t have to face the problems that are staring us straight in the face.  Keeping the denial going means that we can pretend we have the illusion of a perfect family can’t we?

– What if we use the label?

– What if other people learn about the condition that a child has been labelled with?

– What if the label teaches others patience.

– What if the label means that academics and medial staff have to take notice and provide some help.

What is so wrong with having a label?  I have endometriosis, I was infertile and I am a food addict.   I am not ashamed of any of those so why do I hide them in real life?

My children now have labels.  In my stupidity when they were younger, I remember hearing the most ridiculous words coming out of my mouth.   I would start by saying ” I know he has issues, but I don’t want him to go through life with a label.”

Nobody will fight our choices if we choose not to have, or to use the labels, but at what cost to our children?   Are the labels beneficial to them and are we really just digging our heads in the sand and hoping it will all work out alright in the end?

Why is it so wrong for so many to have their child come under a  label?

 

 

 

 

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Sweet Temptation – Who’s Right – Teacher or Me? Help…..

We had a situation last week.   I may be reading too much into it, but it really irritated me to the bone.

On the way home from school, elder was very quiet and piped up that he had a letter than I had to sign for him to take back into school.  I didn’t think that much about it at the time and just thought it would be for “yet” another trip for P7’s.

At home, he sheepishly slipped the letter under my nose and I read it with total disgust.  Not in disgust at him I have to say (although I had to show him some displeasure) but in disgust at the contents.

It begins by saying this type of thing:

Dear Mss xxxxx
I am really sorry for stealing sweeties from your desk, and I know it was just too tempting, so please please forgive me and I know you can never ever trust me ever again for lying and nobody likes a thief.   I have to say sorry to the whole class and I hope you can forgive me.
Yada Yada Yada you get the idea.

 Some of you may be shocked that on this occasion, I didn’t give my boy the third degree, or make him bow and scrape to a pretence of guilt in front of me.  Some of you may stop reading right now, make your mind up what kind of person I am, and then you don’t find out my side of the story.

Wind my neck back in for a month and we find a group of “professionals” and I talking about my boy, his future, and his transition to the big school next year.  As part of that discussion, I tell them about my sons sugar addiction and cravings.  Bear in mind that I am not talking about your average pouty child who just likes a sweetie or two.

I have only recently come to terms with the fact that my son is a sugar addict and that it is part of his condition.  I specifically mentioned it at the meeting where his teacher was present as I had only just found out for myself that he was not just an out and out thief from the treat cupboard, but actually has an illness that is a side effect of his condition and compels him to ingest sweet stuff.  He is just lucky as can be that his genes keep him as slender as he is with all the stuff he packs away.

It helps me to understand why we cannot have lots of bags of sweets in the house, or lots of packets of biscuits as if he knows they are there, he will get up during the night and clear the cupboards.  This behaviour has caused many arguments in the family with extended groundings, removal of privileges, promises of treats to leave them alone etc etc etc and NOTHING worked.  I was so in the dark that I thought my boy was just pushing the limits further than is acceptable.

Back to the story.   We have the teacher INFORMED that he is a sugar addict and that it is part of his condition.  Then the teacher leaves a bowl of sweeties on her desk to give to the children.  I can only guess at the reason for the sweeties, but I suspect they are an incentive for good behaviour.

Picture this.  An empty room with no adults around, and a group of boys who probably have little opportunity to make the grade for one of these revered sweeties help themselves to one and congratulate themselves on their cleverness at outwitting the adults.  One of the boys feels guilty, so dobs the rest of them in and says he didn’t pinch any “so I am told by my boy” .  He also tells me that the dobber in got off with it.

At this point, I am fighting the urge not to laugh as in the same situation, if I were a child in their shoes, I suspect that I would have helped myself to one of those sweeties too.  I am also irritated with the teacher for putting such temptation in the way of someone who has a sugar addiction and expecting them not to take one.   I am even more irritated with myself for expecting the teacher to even to remember that he has a sugar addiction.

I will not be carrying on this issue at home though I cannot tell my boy exactly what I think of it all.

They were warned – and my boy had to take the same punishment as the other boys who took a sweetie, but heaven above – why, why, why would you leave a bowl of sweeties on a desk in front of a class of kids.   It is utter madness.

What do you all think?

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Direct Payments for Care of a Disabled Person – Worth it or not?

Some of you may not actually be aware of what direct payments are.

Social services come out and assess a person with a disability or child to see what their care needs are.  From that, a parent (or the person with a disability) can be offered a set amount of hours per week that they are entitled to “buy” the services of someone else to care for them.

We were assessed and approved to receive 8 hours worth of Direct Payments a week for middler.

I can use them for

  • short breaks (take this to mean a few hours a week with a carer who takes them out)
  • nursery place / after school clubs with specialist support  (read £37.50 per day for special needs after school club).
  • club fees (not many clubs going around that will take special needs children)
  • personal care (hahahahahaha)
Finding someone to help

Direct payments means that we need to find our own staff to carry out the jobs above.    Aside from the fact that most of the people who could benefit from direct payments don’t have the ability to interview staff and deal with their employment, the pool of staff who are any good is very very low.

The council may advise and carry out police checks on staff, but the responsibility for the staff shifts from social services / the council – TO YOURSELF.

This means that if anything goes wrong, it’s your own fault.

Employing someone

When you do find someone who you “trust”, you then have to sort out the employers insurance and their tax and national insurance contributions – oh and pay the PAYE to the inland revenue.  Yes, you can use a payroll company, but you still have to sort out hours, payslips and HMRC.

The biggest problems with it are:

  • Finding good staff that don’t make a fool of the service users (middler to me).
  • Finding good staff who have enough time to do it.
  • Arranging the staff time with your child and having to pay for that as well.
  • Risking losing the care package as there are not enough people to do it.

What happens is, that if someone doesn’t manage to use up their direct payments because they can’t get staff, then when they reach the next review, they may well have some of the money taken back, and their hours cut as they will be seen to be not needed as they were not used.

Biggest Bug Bears
  1. My package is for my child.   As well as the huge mountain in finding someone to take responsibility for our children at times we need to find the time to do the regular stuff that other people can do with their kids as part of their daily lives (like homework).
  2. My biggest bugbear (not including not being able to find employees) is that I really could be done with someone doing my housework or making the supper sometimes so that I can spend quality time one to one with my middler.
  3. The person who I PAY to take him out gets to spend the quality one to one time with my boy on  my sterling, and I still have to stay up late to do chores as they have to be done as I have to spend the time he does go away doing the homework etc for the other two.  (yes, direct payments covers the cost of their time, but I have to pay for the carers share of where they go and what they do).
The potential is there for it to be a good way to go in buying the care that we need, but if the social services don’t also start a way help find staff, then it is always going to be difficult to work.
Leave me a comment to say what you think about it.
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Things I think ALL Parents should know about Foetal Alcohol & ADHD Children.

This is a cup of coffee and a biscuit type post.

Have you ever wondered what behaviour characteristics are common to a lot of disabilities?   Many problems, such as Foetal Alcohol and Attachment Disorder, Pervasive Development Disorders  and Language Disorders which are common in Adoption have more pronounced issues along the same lines, but these are things that we should all keep in mind when we are dealing with vulnerable and sensitive children.

You need  remember that not all vulnerable children act like vulnerable children and may act aggressively.   It is our job as adults, not to judge every child by the impossible standards set by children who are not within the special needs arena.

Once a child attends school, the issues and problems that they face increase by startling amounts.   Suddenly they are faced with the sector of society that many of them want nothing to do with in life, but are forced into inclusion.  There are some children, and some situations where inclusion works, but the extent of help within our school systems for these children is just not good enough in  many cases.

If we add the pressure of social acceptance and the pressures put upon them by teachers who want them to meet academic targets, we can see that it is easy to ask too much of children who are not mature enough to deal with it.

Behaviours that can be seen regularly with many of these disabilities are spread across the spectrum, and one or two of these put together is not going to be recognised as a disability.   When we are seeing lots of them together, warning signals should be sounding in parents, teachers and friends heads to get help for them.

You don’t have to listen to me to tell you how many children are being failed by our education system due to costs, you can ask any teacher on a day off with a dry white wine in his/her  hand.

I have heard people on social media, ranging from the ridiculous to the sublime and making all sorts of accusations about the people who say they should not be drinking alcohol.   Well, l can tell you, that life with a foetal alcohol child can be sheer hell for everyone concerned.

Remember this post when you think about picking up a glass of wine once you know you are pregnant.   The only thing the medical profession can agree on is that they DON’T know how much alcohol might affect any child.   From that, I read that it could be one glass or it could be 10 glasses a day every day.  All children and their tolerances are different.

Contrary to common belief, most foetal alcohol children are probably not born to mothers of raging alcoholics.   Most are likely born to women who think that  a few glasses of wine regularly won’t do any harm.    Sadly, those women tend not to admit having the glasses of wine when they are pregnant and they underestimate it to doctors.    Foetal Alcohol Effect as a diagnosis, I suspect is one of the least diagnosed conditions that there are out there.  I can see that most of them are diagnosed as having other conditions that are much more socially acceptable to talk about.

Nobody should hide behind that.  Every mother knows if she drank alcohol when she was pregnant.  If your older children have many of these symptoms, then think seriously about what you are trying to get in place for your children.  Pretending it is ADHD when it is Foetal Alcohol might not get them the help they need, and if they have both conditions, then they are really going to struggle. And don’t read into this that every ADHD diagnosed child should really be FAE because that would be very very wrong.

Being diagnosed as foetal alcohol effect – which does not have the facial symptoms – is not socially acceptable though, is it?

Who is going to admit it to a doctor, and how many doctors are going to bring that up with a parent?  It is the responsibility of the parent to swallow what they did, accept it and get their children the help that they need – before it is too late.  This is the list that applies to a certain lovely little lad that I know with foetal alcohol effect.   There may be more symptoms, but I can only tell you what I know about.

On the surface, unlike the children with Full Foetal Alcohol Syndrome who are much more obviously affected, with more profound special needs, the foetal alcohol effect children look unaffected.  Many of them seen to have good speech patterns, they tend to learn to read and write easily although they often struggle with the comprehension, and they tend to be able to make their daily needs perfectly well-known.

  • ADHD is a common side effect of Foetal Alcohol.  They are not the same thing.
  • Very young children with FAE are very high needs and over demanding. They are often the kind of children that even at the age of 3 +, you cannot leave them in a room long enough to have a pee.
  • Problems with school work and learning academic work, tending to be struggling understanding concepts.
  • Difficulty making sense of some commands that are given.
  • Speech and language problem at times.
  • Difficulty controlling impulses.  Rather like not being able to put the brakes on something and charging ahead without thinking.
  • Short term memory issues.  Learns concepts and then forget them again.
  • Under developed conscience.  Does not see how what they do might have an effect afterwards.
  • Doesn’t see the point of having to adhere to rules.
  • Struggles to deal with feelings of anger or inadequacy and may react with rage.
  • Any anger from anyone else may mean they react the same way.
  • Easily influenced and usually keen to please people which makes them very vulnerable.
  • Extreme reactions to being told no, not today, not getting their own way.   In most cases it is far and above the reactions of non foetal alcohol children.  Even in mild cases, it could show as being overly stubborn.
  • Low self confidence and high drive to be accepted and may take the blame for things to be popular.  May also struggle to tell the truth and be used as a scapegoat by other children as their short-term memory makes them forget the sequence of events, and nobody believes they can’t remember something that happened 30 minutes ago.
  • Teachers lose patience with them as they learn something, then a few weeks later may forget it.
  • They often turn into perceived bullies as other children often taunt them when they learn the weakness, and the Foetal Alcohol child then gives the extreme reaction to the situation and gets punished instead of helped.  The other children know that by the time they get back to class, the FAE child will struggle to get the sequence of events right.
I have recently been made aware of one other characteristics that affect many children and that is the one on sugar cravings.  I know one foetal alcohol child who very much has that, and he will steal to satisfy his cravings for sugar.  It was the first time that I had heard that it was a secondary effect of  FAE.
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I had to read it in a book.  Thank you Brenda McCreight for your book on Recognizing and Managing Children with Fetal Alcohol Syndrome / Fetal Alcohol Effects – A Guidebook.
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How enlightening was it to actually know that it was a behaviour that is quite common with the condition.
I don’t doubt that this is hard reading for some of you, and others may feel some guilt at what the possibilities are for your children if you drink alcohol.  I don’t have those hang ups as I did not give birth to my children, but if you suspect that is what your child, or children have got, swallow your pride, see it through and get them the help they need.
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And if you are pregnant and drinking alcohol, then stop now.  If there is any damage done already, at least it will stop when you do.   I really don’t care if you think I am the overbearing Pregnancy Police, because I live with the effect of someone else’s drinking and how it devastates lives, and I don’t want it to happen to your children.
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I will leave you with the words from @melaina25 from Transatlantic Blonde who  hit it on the head in my last post about FAE when she said that there has never been a foetal alcohol baby born to a mother who didn’t drink alcohol.
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I Have Sent My Child to Stay with Strangers.

For Thursday 7th July 2011, we were offered our first overnight respite from middlers non stop antics.  It was a blessing in disguise, however you describe it. 

  • This post may lose me readers. 
  • This post may also make someone else feel not so alone.

Lets take a day in the life of Scottish Mum and her family.  

It’s fair to say that middler has been struggling with his brothers since the start of the summer holidays (a whole three school days).  Having spent nearly 8 months under mums feet , he considers me as his sole possession.   He cannot read, he cannot write, but he can talk and he is highly mobile.  We are in the caravan, which is always a challenge, but has usually been good for him.

On Wednesday, woken up by a sharp prod in my chest, I jumped up with a start, and banged my head on the cupboard above my head in the caravan.    Racing to get to middler first, I miss, and he takes off out the front door and heads for reception of the campsite to try and jump onboard the little ride on lawnmower.  

Reception staff are starting to get annoyed with any children going around to the reception to play, and I don’t want to be thrown off the site.  I try and catch up with him.  The old wardens used to know him, and kept a watchful eye out for him, but the new ones are more rule orientated –  although still very nice. 

He dances around the lawnmower  and starts to shout and swear at me – telling me I am a “fucking bitch”.   I finally manage to catch him, and on the way back to the van, my shins get a few swift kicks.  My legs start to feel numb and the pain brings tears to my eyes.  

Getting him back to the van, I dodge his head twisting round to try and bite the back of my arms (you know the fleshy bit that hurts like hell if someone nips it – if you don’t know, you’ve had a sheltered life).  He’s nearly 10, and not far off my height, and the struggle to control him gets harder every year.  

He is in angry mode at being stopped from doing what he wants to do, and his voice gets louder and louder.   He slips my grasp and wakes littlest up by kicking him in the stomach.   I quicky give him his tablet and try to get him into a safe hold to stop him from kicking the furniture into bits.  Elder is woken up and comes down to take control of the legs that are swinging up and trying to knock my head off.    He manages to take off the trainers, and any kicks from now on will be much more pleasant. 

I know what kind of day I am in for.  It’s the kind of day we are in for often when his brothers are around, and I am the sole adult to look after them.   Littlest and elder can’t walk past him without a vicious kick numbing their legs, stomach, face, arms – in fact, anywhere he can reach them. 

It ends in Tesco for supper when he doesn’t get his own way, and begins to kick the shelves and products off of them.  I manage to get him on a wrist strap while elder holds his head to keep his mouth away from my face.   Getting embarassed now, littlest and elder decide to slope off to the side of the aisle and leave me to deal with it.  I am struggling to keep the intermittent headbutts away from my face, the alternating teeth off my hands and arms, and control the legs that are back kicking my shins as the hands grab chunks of my flesh and squeeze as tightly as they can.  He is in full meltdown in the middle of a flaming supermarket.

Unlike a toddler, you can’t leave a near 10 year old to rampage in a tantrum through a shop.  He would cause so much damage, that I’d have to work for a year to pay it off, and thats before Mr Plod is called for damage to property.     I decide there is nothing for it and I set myself down on the floor with him in a safe hold where we were.  We are in the main aisle in front of the checkouts.  I can’t move him forward or back, so I sit where we are.  I can’t hold him properly in the one person safe hold anymore as he is too strong, so he managed to get to my hands several times.   He is screaming, swearing,  headbutting and biting.   Staff begin to congregate around us, and elder and littlest get upset at people staring.  

Nobody bothers to ask if I need any help.  Why would they?  They think he’s just a spoiled brat and I’m a bad mother.  Nobody dares to ask me to move out of the front of the checkouts.  Thank goodness for that.  Maybe they think I’ll get up and headbutt them.

Such is my life.  Such is our life, mine, littlest and elder.  Middler keeps it in check for dad and strangers.  Then he waits until we are all alone and begins to pound us into what he thinks is his will.   No amount of bribery, corruption or sweetie offers will change the path of the outcome.  He resents his brothers, and he hates me when I have to split my time between them all.   He wants ALL the attention, ALL the time. 

In front of those who assess him, he cuddles me and tells them he loves me.   He saves his anger up and lets it out  for us when he feels safe.

He has a form of brain damage.  He looks normal, he walks normally, so therefore, to other people, he must be “normal”.  He can’t act like that, can he? 

  • I am exhausted, but its not physical. 
  • It’s mental. 
  • It’s never being able to rest, never being able to go to the toilet without getting someone to sit and hold him to make sure he doesn’t run off. 
  • It’s not being able to get a shower for five days if there is no other adult to keep him while I have the luxury of a spot of water to clean myself.  
  • It’s never being able to relax. 
  • It’s never knowing what he is going to get up to next.  
  • It’s never enjoying being his parent while his brothers are around. 
  • It’s never being good enough for him.
  • It’s knowing that he can keep that anger inside with other people but his anxieties are building up inside, and we get them later.
  • It’s knowing that he is vulnerable as much as he is strong.
  • It’s knowing his obsessions rule his life.
  • It’s knowing one of his obsessions is to always be in charge.
  • It’s knowing a major indicator of his issues is the extreme reaction to the word no.

At the offer of  our first ever respite, I drove home and back on Thursday at short notice.   A 112 mile round trip for a night of respite.    With littlest and elder, we saw him to the respite house.  They played hide and seek, and one of the carers for the night is also a helper at his new school for August.  His wobble on the way there disappeared and he instantly felt at home.  A young girl was on the floor playing.  We sat in the room he was going to sleep in, and after a coffee and a quick chat, I left him with strangers.

I walked to the car, choking back the tears – determined not to upset littlest and elder.   I didn’t want to leave him.  I knew for us, that I must.

  • I begin to feel free. 
  • I feel bad for feeling free.  
  • Littlest and elder feel free. 
  • They feel bad for feeling free. 

Not having him gives me a taste of what life is like with “neuro typical” children.   I mourn the lack of that life.

He will be back with us soon, and my heart fills with equal measures of happiness and dread.  I love him, and I will protect him until my dying breath, but I don’t like our life.  I don’t like how we have to live, I don’t like how littlest and elder have to live, and I don’t know if I can do it forever. 

When he is too big for me to control, he may have to go to residential somewhere.  I don’t want to do that to him as I know he would not cope with that.

Some days I don’t know how I will ever get to the end of it. 

I always do.  

Some days are better than others and for those days I am grateful.

He is not the cause of his anxieties, and he should not be like this.  He should be a happy, carefree “neuro typical” child.   He isn’t.   Every day, I wish that he could have the life that he desires.  It makes me so angry to see his struggles to live each day.

He wants to be “normal”.  

Having brothers only a year older, and a year younger than he is himself, means that he can never forget what he is, and what he cannot do.

So now you know. 

  • As a rule, we special needs mums with behaviourally challenged children don’t tell you exactly how it can be.
  • As a rule, you wouldn’t believe us if we did.
  • Our children don’t respond to textbook strategies.
  • We sit alone, thinking how awful we are as parents. 
  • Our confidence disappears as people treat us with condemnation rather than respect and help. 
  • We read, and read, and read, and read.   
  • We try to find a cure. 
  • We lose our old friends, and sometimes we are lucky enough to make new ones.
  • I am lucky.

When my son was 4, I thought I was the only person being beaten up by their child.  We were in the process of adopting him, and I was scared to say how bad it was in case they took him away.  I loved him, and I couldn’t see any harm come to him.  

I thought love was going to be enough.

Love is not enough.

  • Don’t judge a struggling mum.  
  • Give her a smile.  
  • Don’t dismiss every child who swears or kicks as bad.
  • Don’t think a family is coping, just because they seem to be.

I am grateful to the woman on the checkout we chose in Tesco on Wednesday. 

  • She smiled. 
  • She asked how we were.
  • She knew what I was doing as she has a grandchild who is being assesssed at the moment. 
  • She lifted my spirits. 

We came back to the caravan, we went for a walk and I tried to teach him how to skim stones on the lake.   

  • He comes back to see me today.
  • I can’t wait to see him. 
  • I have missed him.  
  • Littlest and elder have missed him.

Respite is good.

 

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Who will take a leap of faith with me? Make a difference.

What did I learn from the conference in London for Cybermummy 2011? 

It isn’t a trick question, honestly.  I learned that I am capable of doing more.

This is not an ordinary blog post, I will save that for later.   I need to get this out, and I need to begin talks.  I am sorry for being so cryptic, but you know how the net is, and how ideas get lifted. 

I need to reach brands, and I need to have talks with people who can, and people who won’t get paid for it, and won’t mind not getting paid.

It may, or may not work, and anyone involved will be taking a huge leap of faith with me.

If it doesn’t work, I may get egg on my face and be ostracised from the blogging community for ever, but this is something I had planned locally,  that I want to amend and take further. 

But, it’s not about me.

I’m not one for being light and fluffy, although I can be as niave and inconsistent as any other sleep deranged mother.   I didn’t attend any of the money making sessions, and decided to head for the ones that would help me stay legal as an online blogger (but I did sneak in at the end of the over-running one which had successful business ladies giving a talk on how they make money from their blogs). 

I have had an idea forming for a while that I had begun to move forward with implementing locally, but hadn’t as yet rolled it out or secured any sponsors.  I know what I wanted to do, and what my end goals were, and it needs people to help get us there and take this to the next level.   My ideas are based around a concept which needs work, and shaped, and I would love to have it corrected, and challenged by someone who is more skilled than I at developing concepts.

The beauty of it is that I don’t know how it will look in the end, or if many people will support it, but with the joint networks of bloggers, the potential is phenomenal.

I missed seeing some people I wanted to talk to, and for that I am regretful, but hopefully a chat can be opened up very soon to amend that.   

A little discussion at the flower market on Sunday was the final catalyst that had me deciding to take this leap of faith, to believe in myself, and all of us, and do something about it across the UK blogging network.

The BIGGEST impression on me was made right at the beginning.  Sarah Brown affected me.  I am not going to deny that.  I had expected not to like her, but after listening to her speak, and a shy hello, I changed my opinions, and the possibilities of working with her, or someone like her for the future  began to spin in my head and make the potential of my projects wings spin even faster.

As the PM’s wife, she could have made the choice to be a well adorned, and beautifully dressed decoration to hang on the end of her husbands arms, and just be trotted out at public functions with a frozen smile on her face, and a damp platitude  on her lips.   She didn’t. She chose to act.

My blog is heading more and more down the road of serious issues, yet I also want to retain a sense of freedom, and call this blog mine.  I want to add some light and fluffy things and take advantage of the little luxuries that life has dealt me.   I will separate this project from my personal blog and twitter once an initial brainstorming session has been arranged and covered. 

This project is not FOR me, it will only be started BY me.   This will be OUR project.

I have had lots of ideas running for a long time, and I am ready to find support for them.    My blog is not suitable for that.   As I said, this project, is NOT about me.

From cybermummy11, I  took away the impression that we can pull this off together, all of us, not just those who went to cybermummy.

 Our world needs the people who go out and have fun and enjoy themselves, but it also needs ALL of us to move forward with taking some social responsibility. 

I NEED – help.

I NEED – support

WE NEED  a room where a group of bloggers  who can, and / brands / interested parties can meet, with the  travel and accommodation expenses of the attendees covered. 

WHAT IF – i’m talking about you?

WHAT IF – you want to work with  me?

WHAT IF you want to be part of us?

WHAT IF – you contact me?

WHAT IF  you take a leap of faith with me?

WHAT IF you can spare an hour a year, or a month, or a week, or a day?

WHAT IF- you volunteer ?

WHAT IF you can write press statements.

WHAT IF you can provide the space, or the sponsorship?

WHAT IF you can make a difference, and have the contacts to help make my ideas into a reality?

WHAT IF we talk?

WHAT COULD we do?

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Abuse at Winterburn View, Castlebeck (Panorama) It Needs MORE Than Arrests

Anyone who knows me is going to know what I am going to say about this hospital.   The abuse at Winterburn View, the Castlebeck Private Hospital has shaken me considerably.  These abused people are CHILDREN.  They are in big bodies, but they are CHILDREN.    Picture your two, or three, or four year old being treated like that.

I came home from a fabulous show last night, watching the Shaolin Warriors in Aberdeen (blog post later in the week), and saw some tweets in my inbox about a Panorama Programme that had made people cry.  I also got the impression that it involved special needs and vulnerable adults with learning difficulties and autism.  Watch the programme on Iplayer HERE

I quickly booted up BBC Iplayer at 1am and began watching.  It was riveting viewing, and once I had switched it on, I couldn’t switch it off again.   It was very much more than I had expected when I began to watch.   The extent of the abuse shown on the documentary had me speechless.    I thought they might be talking about a few punches, a couple of isolated asssaults, and that would have been bad enough – but the extent of it, I have no words to express.  The lad who carried the cameras has stamina and strength to be able to keep going back and into that environment.  Thank goodness for his perseverance to help those vulnerable people, who are hopefully all now safe.

How those abused people felt, I cannot even begin to imagine.    The final scenes with Simone were so bad that it makes me despair.    Our children tend not to tell the truth, or not know the difference between truth and fantasy,  so I can fully understand her parents dilemma when she told them she was being attacked, and they didn’t believe her.  Special needs children suffer from the boy who cried wolf too often.  How her parents feel now, knowing that on this occasion she was telling them what was actually happening to her, rather than imagining something from watching a film or playing a video nasty I have no idea.  I do know that they will never forgive themselves for it.

The Care Quality Commission (CTC) quite frankly seemed toothless.   They came across as paying lip service to form filling and happy with well behaved staff once the door was unlocked to the locked wards.   There was no evidence of activity schedules, or plans for moving back to the general public (from the documentary) – yet, they thought that was nothing to be concerned about.  That should have raised a country sized red flag.  And as for not taking notice of the complaints made by a respected member of staff in the field, Terry Bryan – it shows how little anyone really cared.

One programme later, and it all comes out of the woodwork.  Castlebeck should be taken to account for this.  It is NOT enough to say they are “sorry,” or they are “ashamed”.    If they cared, they would have investigated before they were publically held to account by Panorama.

It is NOT the sole blame of the carers behaving badly here – it is the management of the home who allowed the environment to move in that direction.    And while I am at it, where were the social workers under whose charge the patients should have been assisted?  Why aren’t social workers head rolling on this as well?  Why was the ward locked with no family allowed in or out?   That speaks volumes.   The doctors who must have been aware of unrealistic levels of accidents, bruises, injuries and trauma, but turned a blind eye.

Bored special needs people will strop, they will have tantrums, and they will use language without thinking of the consequences at the time.   Punishment does not lead to better behaviour, or make them think before they act in the future.

I am horrified that Castlebeck have so many other establishments out there.  I just hope there are responsible staff in those.

I am not niave enough to think that Winterburn View is the only place in the UK where vulnerable people are being abused, but I do expect the watchdogs to be on top of them, and keep it to a minimum.    Some of the abuse they suffered on camera had the potential to kill.  It was systematic, targetted, and daily.  How could they miss that?

As a parent of a special needs child who will grow up into a special needs adult, and who might at some stage in his life, need adult care outwith the home for extended periods of time – I am sick to the stomach.

Yes, those of you who are parents of neuro typicals are going to see that it’s shocking, distressing, and that it shouldn’t happen, but social care is never actually going to be something that you have to consider, or be subject to  for your children.

We are knocking on the door of respite for the first time ever, and as a family we need it to start to cope with him long term at home.

The thought that my most vulnerable child could suffer at the hands of bullies like that is already making me think twice about where he goes.  He is growing up and needs to see more of the world outside his home cocoon, so I work though it.

As a grown up, I have to be realistic, and try to see the good in people.  Sadly, through circumstances, potential and his educational experience, all I see is the potential for harm.   When any male teacher, or charity worker deals with us, I don’t think “nice man”.   I look, smile, ask questions, engage them in conversation, and through gritted teeth, accept that I must trust him.   I do look, and I try VERY HARD to find something that makes me uneasy about him (or her).   When he leaves with a carer, my heart beats fast, and I panic fleetingly in case I have just handed my child over to a psychopath.

I also know, that if the day comes that my son accuses one of his carers of hitting him, I am not going to know if it is the truth, or if he is imagining a film he saw ten years earlier, or if it was a dream that has upset him.    The only thing I would be able to do is remove him from the carer, as leaving a situation like that until proof was found could be too late.    What about when we are no longer able to look after his interests.  Then, he is at the mercy of strangers, social workers, doctors, management and staff.

  • Our world saddens me.
  • My lack of trust in strangers, neighbours and friends saddens me.
  • I don’t know how to live with that fear.
  • We must live with that fear and we must trust strangers, neighbours and friends if we are to have fulfilling lives.
  • We must live with the consequences.
  • We must make it better for those who are still in places like Winterburn View.
  • We must reach out and help those who cannot help themselves.
  • We must NOT turn a blind eye.

I am not relieved that these patients have been moved to “safety”.  I am sick to my stomach about it.  Physically.

Their lives will now never be healed.  They will mostly lack the ability to reason that the danger has now passed.  The rest of their lives will be spent in fear.

Will they be moved to a place that is any safer?

How many other “Winterburns” are there out there?

And before  I end this – what do I think of the reporter that did not intervene during that last horrific day of abuse in fear of blowing his cover?  I love him for outing it, but also can’t understand why he didn’t immediately go to the police.  What about the BBC who allowed it to keep going until the programme aired – they also fostered allowing it to happen for those days.

I would like to think the last footage was filmed on Sunday, someone please tell me that was what happened.

UPDATE:
I have just heard that filming was Feb / March.   That also saddens me.   That was another 2 whole months after this footage was taken – BEFORE they were rescued.

Bloggers With Excellent Posts
Benefit Scrounging Scum – Imagine You Were Four #panorama

The Small Places – Last Nights Panarama – Anatomy of a Scandal

A Boy With Aspergers – Behind Closed Doors

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Foetal Alcohol in Newborn Babies – Do you know the possibilities?

I have had much to do with this issue recently.  I am aware of the effects, the guidance and the common sense.  Having never been pregnant, I have no idea how I would have reacted to drinking alcohol if I was pregnant, but what I do know is, that it is worrying when someone who is 7 months pregnant tells you to lay off when you query how much they are drinking, and tells you that if they drink 10 alcopops a day, that it is nobody else’s business, because it is “their” body.  You do begin to wonder where the rights and wrongs of the legal status of the new baby to come really are.

Do you know how much alcohol is too much when you are pregnant?

Do you know how you would live with a child who has either foetal alcohol effect, or foetal alcohol syndrome? 

Would you be able to control the situation, or would you wash your hands and walk away?

WHAT IS FOETAL ALCOHOL?

It is not just any one disorder, but it has a spectrum of degree, similar to autism, in the depth of severity.  The syndrome itself will usually show facial abnormalities, failure to catch up with their peers, and mental problems with learning difficulties and impulsiveness.

The effect, is a milder form of the disease, however just as difficult to live with, and may or may not have facial deformities.     It is said to be the most common reason for mental and behavioural problems with children, however, that can never be proven. 

Babies with foetal alcohol can be delayed, cry excessively, have weak grasp with trouble sucking and feeding.  Brain damage can even lead to epilepsy.

Approximately 70% of FAS children have very severe hyperactivity and often poor behaviour, head banging, rolling, or rocking.  It is possible that they could also be diagnosed with ADHD, or Attachment Disorder, or actually a few other things – when we are really talking about foetal alcohol effect.  There are so many disorders that “could” be attributed to similar symptoms.

IS YOUR BABY AT RISK?

Usually, the more alcohol that is drunk, the higher the risk of damage.   What that does not take into account is the genetic, or predisposition to the possibility. 

Women tend to keep prolonged alcohol use secret, and it is difficult to get help if nobody knows that someone drinks.  It is hard to say if a few drinks, or a few binges will affect any one child growing in the womb. 

My point is, why take the risk of learning difficulties, behavioural issues, deformities and the life struggle that it brings, when it is easy to take the possibility out of the equation by simply not drinking?

I have spent much time with foetal alcohol children.  Did you know that any alcohol that is drunk, passes easily to the foetus, and every growing baby is at risk as their liver is not able to absorb the toxins.

I have not put any guidelines down, as they change frequently.  The only thing that people can be sure of, is that you don’t know how much alcohol will affect any one baby.   All parents of special needs children worry that it is something that they did that caused the disabilities, so why people take the risk of being able to flog themselves for life with the possibility they caused a disability is beyond me. 

There is nothing anyone can do about a session of hard drinking  before they know they are pregnant, but surely, once people know they are pregnant, it is silly to keep on going and taking the risk.   

How many people live with the “it won’t happen to us” motto?

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ADHD Mythological Pathways

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After seeing a few tweets and posts surrounding ADHD and the stereotypical way they have been described, I feel compelled to “right” what I see as a wrong.

ADHD is a condition that affects the brain. There is a chemical called dopamine in the brain. In ADHD children, that chemical is lacking or low. It causes the brain to misread signals and signs, and makes it difficult for children to calm their brains long enough to take in much of what is going on around them.

It also leads to increased frustration as many of the children who suffer are normal or high intelligence, but simply can’t focus long enough on something to be able to fully grasp the correct meaning.

Loud noises can irritate and distract them, to such a level that they are in pain. Their brains can often suffer with short term memory loss, but once something has passed into the long term memory, it is usually there to stay.

Children with ADHD on its own tend to be socially excluded on many levels. They can make inappropriate responses as their brain is just getting to the answer of the first question someone asked, when the asker is now on Q3.

They often lack the ability to think before they speak or act.

Women could relate more if they could imagine their hormones all out of whack – all the time, and multiply that effect many times.

Far too often, I see, hear, or read about people who think it is an excuse for bad behaviour.

They often also seem to think that Ritalin is a drug that calms down bad behaviour.

Those of you who have read this far are either interested, or keen to find out more. Well done for wanting to understand of a condition that is hyped out for the wrong reasons.

To finish, I am going to take the Ritalin debate. People who don’t know, seem to think it is prescribed to “calm down” badly behaved children.

That is completely the wrong impression. For ADHD children (and adults) and with other disabilities with similar brain issues, the medicine replaces the dopamine that is missing in the brain, and appears to calm children down. It doesn’t. What it does, is like insulin to a diabetic and replaces what the body is missing so that you see them on the same level as their non ADHD peers.

Give Ritalin to a child who is not ADHD,  and with a normal dopamine level, and it will actually make that child hyperactive – the drug would be adding extra to their normal level of dopamine. Think giving a normal child massive levels of sugar.

If you give an ADHD child too much Ritalin, then it will also hype them out. It can be a case of trial and error to hit on the right dose, as each child who suffers can have a different level of dopamine missing.

I hope I have done my bit to dispel some of the myths running around about ADHD, and if you have any questions, feel free to get in touch. People using ADHD as an excuse to run a child down should think about how much damage that does to real families coping with a real medical issue.

So there you have it.

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