Posted on 29 Comments

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?





Posted on 2 Comments

Disability Injustice and Cuts to Services

I was absolutely astounded to read the case of  Riven Vincent, but not surprised.

In case you have not yet heard of her, or read the news over the last couple of days, she has asked social services for residential care for her daughter, as she can no longer cope at home.    She asked for additional respite to help her, and it was refused. 

For one, I am not surprised that this has happened, and I do believe that it is going to happen more and more often as the cuts that the Government send down to local councils bite.  In my own local council, there are several cuts to disability and ASN childrens services which have been given the green light for swathing cuts.

People who have never lived with severe disability, or mental illness, have actually no idea of what stresses they and their carers are often under.   The long term effects of people who do not access help are far reaching.

1.  On average, it can take years for requested services to come into effect.  Thats if they are offered at all.  Contrary to popular belief, it is quite difficult to be allocated a social worker for a disabled child, even if you ask for one.

2.  DLA to which disabled people are entitled, make applicants jump through hoops, and expect people with disabilities to manage to complete a novel sized application form intelligently.   Many give up trying to get it. 

3.  Parents with disabled children are often not in a position to fight for their children, as they are exhausted by the day to day caring.  They are an easy target.

4.  If services, respite and additional care is not offered when it is needed, suicide rates and passing off to care services will increase as people cannot cope in their homes.

The fact that Riven Vincent has asked for her daughter to go into care is not surprising.  She has other children to look after, a huge workload with Riven, and being denied enough support for her to be able to nurture her family properly.  

I do not pretend to understand how hard it is for her with a doubly incontinent child, not enough incontinence pads, and insufficient support to allow her to care for her other children.  I know how hard it is for me with my family, and my heart goes out to her, and those like her.

She gets no sleep, and it cannot carry on like that.  I have huge respect for her, and the fact that she has asked for help shows how strong a lady that she really is.  

Leave the political stuff aside.  This is a family that is struggling, who asked for help and were denied. 

I wish Riven Vincent all the luck in the world, and I hope that she gets all the help she deserves. It sounds like an awful situation that she can neither move forward, nor backwards from, unless someone takes charge to help her.

Moving the blame back onto local government is a disgraceful cop-out.

Thats my opinion.

Posted on 14 Comments

Christmas and New Year – The Reality

 Image: Idea go /

I don’t like my life.  I am not ashamed of that, but I do appreciate it is difficult for some people to hear or identify with.    And this may be an uncomfortable post for some to read, both for those with and without children who have disabilities, but it shouldn’t be hidden away.  In the way that mothers talk about potty training, weaning and breastfeeding in mainstream conversations, so should special needs parents and carers be able to talk about their issues.

I also suspect that there are many thousands of people out there who don’t like their lives for many different reasons, whether it be work, partners, parents, money limitations etc.  There are many people who pretend that they have amazing lives, or are happy with what they have to save face with other people. 

There are others who would possibly thrive in a situation like mine, but as a general rule, us mums (and also read dads when I say mums) of behaviourally challenged and brain damaged children tend to struggle.   Especially when having to also give up good careers and decent money to struggle instead, due to difficulties getting child care.  It’s a common issue for parents and carers of many disabled children and adults across all disabilities.

I certainly don’t dislike ALL of my life, but there are huge portions that are difficult to live with at any given time.  I don’t feel sorry for myself though, even though I find it difficult at times, so I guess that is the difference between coping and not coping, but at times I will have a vulnerable moment and the cracks will show. 

Back to Christmas.  It’s true wherever we go, that people who ask us if we had a good Christmas, or New Year (or holiday for that matter), are not really asking us how it went.    There are the exceptions, such as close friends or family who are part of your daily / weekly / yearly cycle of discussion and sharing of life.  I am not talking about those people.  I am talking about the people who you stop and speak to on the dog walk, on the shopping trip, on the school run, neighbours, and acquaintances that make up the most of our daily lives.

We all know how it goes.  We walk past someone, we may nod and say hello, or if we have time, we’ll stop and pass some time with a sentence or few of how life is going, what the children have been up to, holiday plans etc etc.  Some of you may even join the coffee mornings or lunch time get togethers that playgroup, ante natal class,  and creche mums often begin.

I didn’t belong to any of those groups for long.  I have a special needs child with behavioural problems.  None of those groups in my area liked the children who don’t behave in the manner that they deem “appropriate”.   That left me and many others without the usual toddler groups moving on to playgroups, and school, that begins to create those wonderful friendships that can last for a lifetime.  My boys won’t ever have those friendships as they have a special needs brother with behavioural problems.   Other parents don’t want their children to learn “inappropriate” behaviour.”

I have changed that for me.  We now belong to and help run a club that accepts special needs children and their brothers and sisters together.  It is also an excuse for mums and dads to make new friendships, and be able to talk about the issues that we can’t talk about with the people in our everyday lives. 

This group has been my saving grace.  When the going is tough and I am being punched and sworn at, or kicks are being aimed at my head by a child who has lost control of the functions of his brain.   When the meltdown has lasted most of the day without a break, and the other children who cannot cope with it are also starting to play up as they are getting no attention due to the fact that son no1 is taking up all my time, I can think of the release I can have by telling someone who actually understands what has gone on and how that makes me feel inside, truthfully.

People who do not live like this have no idea what is happening in homes up and down the country.  These sheltered people, for whom a toddler tantrum, some tweenage backchat, or a teenage outburst are the worst that they have ever come across.     An adult abusing another adult would lead to many interventions being offered, with safehouses, and assistance to leave an abusive partner.  For mums, there is nothing.

My child is not yet old enough to cause significant damage, as I still have a weight advantage over him, I can still stop him.  I see many women with children bigger than mine who have no way of stopping the carnage that they live within, no matter how many behavioural therapists are thrown at them.  These children do not respond to sticker charts, sweetie rewards, or monetary bribing.  Their brains tell them that they are the centre of the world, and  just want their own way and will do whatever it takes to get it.  Anyone standing in their way better watch out.  These are not the spoiled chldren of the world, but simply the ones not coping with the world around them.  Some will work it out and settle, others never will.

I am not yet sure of what the future holds for me as a mother and my son as a child.  He may continue to attack me when I am no longer able to stop him.  I cannot think about that yet, and I am fighting for his place in our social system to try and ensure the help is there when it is needed, but with the cuts to services of vulnerable people, I don’t hold out much hope of how it may end up, and how we, as a family may end up.  Again I can’t think about that yet, it is too far ahead for me.

I don’t see why so many of us living like this (and there ARE MANY MANY) should have to keep so quiet about it all, but we do.  En masse, we shut it away and answer something like “fine” to all of those other people in our lives.  It always makes me smile to know that we use the word fine as F = Fxxxed Up.  I = Insecure.  N  = Neurotic.  E = Emotional.  It sums it all up perfectly and people smile and nod sagely as we turn the conversation to them as a means of moving it off of having to talk about our own circumstances.

 For one year, maybe we should all try the truth.   When we are asked if we had a lovely christmas and new year, people all expect the answer to be fine, nice, quiet, busy, lots of fun etc etc, but I wonder what they would say faced with a simple “no”.  I may try that this year and see how many people I can make uncomfortable.

What prompted this blog post I hear people asking.    Well, I asked some special needs mums how their christmasses went yesterday, and the answers were completely different from the usual.    Here are some of them.

” Nightmare”
” Could have been better”
” x chased his brother with a knife, it was awful”
” I’m glad it’s over, getting through the day was a drama”

And you know what, few of them would have wished it any other way.    There are some people who say they would not change their children and that they are special the way they are, but each and every day, at some point in the day, I wish that my child could live a life like other children.   That is not being disloyal, that is wanting the best for him. 

Getting back to my life, the things that I don’t like about  my life, fortunately they are also the things that have caused what I do like  about my life.  

  1. I have three fabulous boys to tuck into their beds at night (ok they are getting too big to tuck in, but you know what I mean).
  2. I have a circle of around 10 amazing real life friends that I would never have met if it was not for my sons disability.  My pre child friends all disappeared with the advent of challenging behaviour from no 1 son.
  3. I have to force myself to be more confident and authoritative to get what I want for his health and education.
  4. Twitter and my computer is wonderful.

It’s no secret that I do like twitter.   Strangely enough, on twitter, I have also found people who understand.  Some are at the beginning of this journey, and some are at the other end, but the majority are telling the truth of how it is when they are asked.  That is a good thing.  The responses are also encouraging from the people who have “listened” into the conversations, or are joining them directly.  That is another good thing.   I have rarely felt uncomfortable on twitter talking about it.  Maybe the twitter world people are more open minded, thats also a good thing, and it’s a VERY good thing for distraction for mums and keeps us in touch with the real world that exists outside our cocoons.  This is an AMAZINGLY good thing as the isolation from other mums increases more as our behaviourally challenged children get older.

As a group, I can safely say on behalf of some of my real life friends and I, that we are not keen on being called saints, or wonderful people, or any other kind of platitude that can be used when well meaning people have no idea what to say.   We do understand why people say it, as the subject makes them uncomfortable, or they secretly think they would be able to handle it better, or they think we are exaggerating.  We are not saints, wonderful, or anything else, we just simply don’t have a choice in it, and are responsible for little lives.

It would be so refreshing for someone in real life to ask how it is, or just simply say “how do you cope?” or “is there anything I can do to help?”   Usually the first thing that comes into the mind is the most appropriate thing to say, unless you are going to complain about the behaviour you have just witnessed, and then suggest a solution – because then you may find yourself on the receiving end of a choice comment or two. 

For me, thankfully Christmas is over.  The Christmas holidays last too long as it is difficult to live a strictly regimented life at home, and supervise children every waking hour, as well as do housework and make meals.  Roll on New Year.    Hogmanay I prefer to Christmas.  No present dramas, no fighting over who got what, and the end of the dark, cold, miserable school holidays in sight. 

I love my kids, and I would fight to the death for them, but oh how I love school days…..”>