Tag: special needs

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Deprivation areas always come first. Is it care versus politics, versus the politically correct?

Image: luigi diamanti / FreeDigitalPhotos.net

Seeing a conversation on a local network actually got me annoyed enough to blog about it.

It’s actually got nothing to do with the people who replied to the discussion, or even those who were involved in it as they don’t know any better, and kudos to the man giving up his time to go volunteer to help some kids, but that’s not the whole picture.

I’m not one for shying away from some minor controversy, and although I’ve tamed it down recently due to more and more people finding out who I am locally, there are some issues that I am still going to talk about.

Special needs, deprivation and injustice are going to be included, and not talked about in the hushed do gooder tones that we tend to be expected to conform to, nor as the eternally grateful for small scraps thrown our way that others think we should keep quiet for.

The politics

It’s a much wider and political issue that means lots of families miss out on the help and support available in our city, and it does depend on your postcode.  I’d imagine it’s a common problem across the UK.

There’s plenty of information being bandied about, talked about and worked on when it comes to the health issues being a postcode lottery.  Those make front page news, but hey, yet again, our disabled and their families can’t fight, argue, or do anything about it as they’ve not got a big enough supporter network.

I answered on the forum, which retrospectively was not a good idea as they don’t know any better.

When I said that parents don’t generally get told what is available for special needs kids, I got pointed to a completely pathetic and useless for a parent website that gathers charities together in Aberdeen.  That’s not the fault of the person who tried to help by posting the link, but it shows what a pathetically poor and useless system we have of letting people know what there is available to them.  It’s all chance conversations, meeting the right people, or plain and simple good luck (heaven help you if you don’t have a computer).

If  I lived 5 miles further south, all my kids would be being helped, be in support programmes, or getting access to clubs and activities that I can’t afford for mine.  If I lived 5 miles further south, it wouldn’t matter if I earned a large salary and lived in a council house, I’d still get access.

A friend of mine with two disabled youngsters can’t get access to much, and she’s now a single parent living on a part-time wage.  It’s her own tough luck that she lives in the wrong suburb to be eligible for much, but she’s learning to fight.

Schemes in the “poorer” areas of town should be able to extend to lower-income parents from the other suburbs of town.   I say “poorer” as I know many people living in those areas with much more disposable income that we have these days, and we manage.   I also know how bad some of the deprivation can be in those areas so I am not talking from the standpoint of someone who doesn’t know.  It’s from the standpoint of fairness across cities and not in specific pockets of cities.

Yes, it makes political sense in the world of “doing good” to be seen to support those in recognised deprivation areas for higher vote count, but where is the room for fairness?  Or does that cost too much money versus the cost of a vote?

Right to share

I’m opinionated, I can look for things and my kids have some support, but it took years of fighting to get it.  We shouldn’t have to fight.

NONE of us want anyone to feel sorry for us, but we do want to be able to talk about it in general conversation, and in the same way that other people talk about their daily lives.

Some might talk about shoes, or potty training, or kids not doing what they’re told first time and using star charts.  It chills me to the bone that those same people won’t discuss punching, getting bitten by tweens and teens, services (or lack of) and just how difficult being the parent of a behaviourally challenged special needs child can be.

Yes it can be fabulous too, but if people are allowed to tell us all about how stressed they are potty training, or how well their kids are doing, their latest medals and accomplishments, or how long they’ve been at the top of the class, then I reserve the right to talk about how awful it can be to live with a child in mental anguish every day and share what progress he is making, even if it is just punching me 5 times a day rather than 15.

I hate being met with a wall of silence when I mention middler after I’ve just listened to someone rabbiting on for half an hour about their wee Johnny.  If people don’t know what to say, they should just say they don’t know what to say and then we can help make it easier for them.

Example of postcode distribution

Look at this for an example.  It’s not to feel sorry for me as my kids do ok, but it shows the system.

This looks fabulous.  Befriend a Child.

We’ve been on the waiting list for years for my eldest.  Supporting documents have gone in from social work and adoption teams.  Paperwork has been updated several times on request.

We’ve been told in the past that there are carers recruited and who just need to be allocated.

We were supposed to be a priority over a year ago.

My vulnerable eldest, one of three, with a behaviourally challenged special needs brother and needing help for himself gets nothing.  His friend who lives in a deprivation area and has parents with more disposable income than we have and no siblings has a befriender.  Supposedly to give his parents a break from their very street wise child.

I don’t grudge his friend a befriender as he needs one too, but it looks like blatant postcode lottery distribution, even if it isn’t.  What makes it worse, is that nobody ever gets back in touch with you to let you know what’s going on.

My boy is heading to secondary school in August and we’ve probably missed the window to give him a very positive experience outside of the home with someone who doesn’t share his mostly pretty difficult home life with his brother.   I had made the mistake of telling him a befriender would be coming soon, after being told it wouldn’t be long.  What a HUGE mistake that was.

Availablity

Maybe there are other things that are available, but there’s no easy way to find out unless you are well enough educated to go seek it out for yourself, or live in the right part of town.

So yes, now putting my toys back in my pram, it sticks in my throat to see another example on a forum of something that is only available to those from the deprivation area postcodes.  And if I feel like that, how on earth do the parents who can’t stand up for themselves feel?

 

 

 

 

 

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Respite – and the future for our additional support needs children.

Image: luigi diamanti / FreeDigitalPhotos.net

Middler was due to go on a four night respite this week, but there was an emergency for the unit and he can’t now go until Tuesday.  Believe me when I say that can’t come quickly enough for me this week.  Yes, that is selfish – and I have learned to live with the selfishness of it all now.

For the family to stay a family, respite has to happen.  We all need a break from him.

For some reason, he is acting up at school, not sleeping well, and to be pretty honest, just being thoroughly disagreeable for a large proportion of the day.  That doesn’t stop me loving him, but he is hard work.  In fairness, his tablets that keep him on an even keel don’t seem to be working properly at the minute so that is understandable.

School want his medicine changed as they are finding him hard work.  I can understand that.

Thankfully we have a fabulous direct payments worker who is absolutely amazing with him, and takes him out some weeks a couple of times for a few hours.  I can’t tell you how lucky we are to have her.  Most people I have approached and interviewed for a direct payments worker have run for the hills when they realised that he can’t be sat in front of a TV while they read a book or chat to their pals on the phone.  With him, they really have to get involved.

I have listened to a couple of mums who have been offered respite and gently tried to persuade them to take the offer up, as it might never come again.   Mums struggle with respite you see.

They feel guilty for whatever disability their child has, and they fear that if they are not personally with their children, that it will all fall apart.  And you know what, quite often it does fall apart, but we need to be grown ups and realise that we are not going to be around forever.

What are our disabled going to do then, because the government is taking away their future care packages in swathing cuts?

Who is going to look after our special children and make sure they eat, and shower, wear clean clothes, and do activities to keep them healthy and alert?

The news is full of bullying, abuse and dismal conditions.

Refusing respite in a good place is silly.  It is also terrifying to contemplate.

I am past that now, but many are not.  Family breakdowns happen with many additional support needs children.

Just today, 10 year old middler, the budding artist, decided that it would be a good idea to take a paint pen and throw it all around the living room.

I managed to get it off the walls, but it won’t budge off the lounge chair that he has already destroyed by poking a screwdriver into it.  Where the screwdriver came from, I have no idea.  It’s certainly not ours.

I am contemplating turfing the chair and just living with the 3 seater and 2 seater that will be left in the lounge that I absolutely detest, as it is so old fashioned.   At the same time I am trying to convince myself that there is no point in buying a new suite as he is not going to respect it.

  • Who wants to live with unpredictability?  I don’t, yet I do.
  • How do we safeguard our children when they can no longer depend on us to look after them?  This question makes me feel sick at times.
  • How do we protect them from the leeches that will take everything from them?
  • How do we make sure that they get fed, or have heat, or are safe?

I don’t know how.  My boy will never be able to fill out his own forms, know what day it is, or what he needs to do to get anything done. At the same time, he is verbal, he can get his basic needs across, and he can walk and talk, so he is never going to be considered high priority for protected housing.

With the cutbacks in disability services, he is unlikely to ever get a job, so he wouldn’t be able to support himself.

The new welfare bill going through parliament is not the first lot of cuts our disabled have taken.

Be prepared for more and more mentally ill and disabled people living on the streets with nobody to care for them, as it is a reality and it is only going to get worse.

Where does the burden of support go?

Does anyone in power actually even care?

It is a scary thought for me, and one which I push to the back of my mind as often as I can, but it is there, and every so often it pops into the front of my brain, tormenting me, sending me pictures of middler as a broken and bullied adult.

We should have more peace of mind than that.

We don’t.

I don’t support our Government as they are pushing us further and further down that road.

That means more people living on the streets trying to feed themselves, and yes, people might turn their noses up at them and think they are drug addicts or wealthy con artists – how does anyone know the difference?

Have you got it yet?

CRIME

Not for drugs.

Not for alcohol.

Not for fun.

Just – for life.

– Is that really what we want to choose for our most vulnerable in society?

– This frightens me – the road we are hurtling down.

– I don’t know how to stop being scared.

– I know I have to pretend it will be ok.

– I know it won’t be.

– I will keep feeling sick about it.

Who on earth is going to help our children?

It is like living in a waking nightmare to even contemplate the future.

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A Christmas Tale – 26 Gorgeous Children – A Party – Special Needs

Saturday was a revelation.  A group of parents run a special needs club at the weekends, with the support of a school and the grateful advice and help from the National Autistic Society.

We borrow a school premises and open up to children with ANY type of disability up to the age of 14 in Aberdeen –  not just those on the autistic spectrum.   We also accept siblings, as there was nowhere that any of us could go with all our children to play, or be involved in activity sessions.

The mix of excitement, christmas coming, a certain man in a red suit, and lots of sugary chocolate is not always a recipe for success, so I met the day with a certain feeling of elation and caution for how it might proceed.   We are all volunteers and we don’t get paid.  I think  it is important to mention that up front, as there is sometimes confusion over how we all fit in to the structure.

There was a lot of excitement last week because of the party, and arrangements had been in place for quite a while.  We received a lovely offer from Kids Bee Happy who provide parties using sand art to come along, which I eagerly accepted.  The lovely Lorraine from Aberdeen arrived with a couple of tables and was soon in constant demand.

Be very aware, that this is no mean feat to undertake for anyone, let alone a  fledgling business.  It takes a confident entertainer to enter a room with such a large proportion of special needs children.  If your products don’t cut the mustard, you will hear about it very quickly from them.

The sand art had generated a buzz of expectation, as it is a new childrens activity, both to me, and to the other parents from the group.  We were all keen to see how it worked – and how our children would respond to it.

It was fabulous.  Children who usually have little or no interest in sitting still for long periods of time were concentrating and working on the projects.   The tables are set up as a unit which contains 6 bowls of different coloured sand.  All in all, there were 12 colours of sand that the children could choose from.

The children (and many of the adults) chose from the racks of pictures that they would decorate with sand.   This is a very hands on and engrossing task to get to grips with.    With lots of pictures to choose from, age groups from 2.5 – 45 were kept amused.   I even noticed one granny having lots of fun.

    

To make the sand art, using a nail, or a little stick, the artist peels each section back on the picture one at a time.  That opens up a section which is sticky.  Little fingers then choose a colour of sand and carefully spoon it onto the picture.  When the picture is shaken, the sand remains on the picture for a fabulous colour effect.

It can take anything from about half an hour to 45 minutes to complete a whole picture.

Our children did pieces of their pictures at a time, then laid their pictures aside and came back to them after eating, or running about.  The fact that they could dip in and out throughout the party make it the perfect activity.   Just watching the concentration on their faces was amazing.

Some children did several pictures, and when they were finished making their creations, the pictures were laminated to take home as souveniers.

The finished and laminated pieces of art have a little hanging tab at the top.  I think they would be perfect to add a little calendar to the bottom and give to relatives and friends as presents.

Lorraine liked this santa picture, as the child who did it used all different colours of sand for the background.

This is a new business for Lorraine in Aberdeen, and she was constantly in demand from parents, who were asking her for cards for future childrens parties and school functions.

Everyone agreed that the sand art was a lovely and welcome surprise which would keep children entertained again and again and again.   We really all recommend it for any function, school fete or party.

For such a large group of special needs children – they did themselves proud.

 The concentration levels and interest was amazing, and many parents were delighted to see their children enjoying such a time consuming and high concentration requiring activity.

Poor Lorraine was inundated and we over-ran terribly due to how much everyone was enjoying it.  She certainly had to work very hard.

We also provided a bouncy castle, plenty of food and the local magician, Garry Seagraves Magic.

 I had seen Garry work while I was in the oil industry at functions, and now, as a parent, I have seen several of his magic shows that are tailored towards children.   He also had experience of giving shows to special needs children – and with the trademark leather trousers, long hair and trusty rabbit Basil, the children all seem to gravitate towards him.

He was the natural choice for our kids.  I don’t think there are many parents of primary age children who have not seen one of his shows as he is quite the celebrity to local under 12’s.

The red man arrived to hand out some presents, and photographer duties were sadly lacking as I managed to miss getting a picture of him – my excuse is that we had to sort out our pressie mishaps when some labels came adrift.

 All in all, it was a successful party.  We over-ran and we owe a great deal of thanks to all the entertainers, volunteers, helpers and even the school janitor who never, ever complains about what we request of him for the club.  He was not due to be in Aberdeen at the weekend and came all the way back  to open up for us when our weekend cover janitor could not make it in.  That’s dedication.

Disclaimer:  The parents of all children included in this post have given permission for their images to be used.  Sand Art was provided by Kids Bee Happy, and was a most welcome addition to our party.  It is one that we will definitely repeat in the future.

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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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Christmas and New Year – The Reality

 Image: Idea go / FreeDigitalPhotos.net

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…..”>

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I am a BAD Mummy

I have a lovely son. He is over excitable and finds it difficult to cope in crowds. As a result, we tend to stay away from crowds as much as possible when we go out to minimise any problems.

One weekend, I decided to treat my children to the park. It was busier than I would have liked it to be, but we stayed anyway. My middle son is highly excitable and will tend to get overexcited and struggle to cope. Many things will set him off. If he is teased by other children he will hit, and kick, or punch and swear. If he is bullied by other children verbally, or physically, he will hit back. The problem is that he is usually retaliating for something that has happened that few have seen, and his loud retaliation means that he gets caught.

I am not complaining about other children, because children will be children, and in the main, most ARE cruel while they learn the rules of life.   What bothers me is how the grown ups react to situations, and how they deal with things.   I could write a thousand blogs on this subject.

Back to the park at that weekend. There was a little girl and she had a tractor with her. it was one of those pull along things, and quite big for her. My middle child, being tractor obsessed decided to sit on it. At first the grown up smiled, and said nothing so my middle son carried on, and I smiled back (it was a dad, there with several other mums and dads).

Just as I was about to rescue the tractor from my boy, my youngest fell out of the large climbing frame for older children, so I quickly glanced at the two of them, and decided youngest needed my help more than middlie as he was still sitting on the tractor and safe with parents watching. I made a judgement, as you do, and ran over to see how the little one was. Thankfully he was okay.

After brushing littlie down and standing him up, I suddenly become aware of shouting, and turn round just in time to see the “dad” wrestling with my middlie who has the wheel of the tractor firmly tucked around his arms. My luvverly son decides to call this man all sort of “choice” pet names that come with the territory when children start school. I hear the dad shout loudly to my child “stop it, you are upsetting my daughter.”

I run back over, and free my son from the wheel of the tractor, just as he swings out his leg and aims a whopping kick at said dad, and it connects with his lower shin. Middlie is still calling him names and I am dragging him away from the scene. The Dad shouts after me and tells me it is obvious where they get their manners from. Excuse me, did I say anything, and well, sorry if I was so busy pulling my child off you and calming him down, that I didn’t get to say sorry in person.

So there you have it. I am the bad mum who has taught her child all these “wonderful things.” A woman approaches me afterwards while I am holding onto one child and trying to gather up two others. My legs are being kicked and the head is trying to bite my arms. Lots of parents are tut tutting around me, and I know that it is one more story for them to add to their little black book of my son and his inappropriate behaviour.

The parent who approaches me said she felt that the dad over reacted to the situation as it turns out the little girl had come over and tried to pull my son off the tractor. He, as toddlers do, decided he was not moving and stuck his heels in. The dad had told him to get off the tractor and that he was too big for it and had taken hold of the wheel and said “off”.

My son is a toddler in his brain only. The problem with him is that on the outside, he looks like any other child in upper primary school. Would the dad have treated him so abruptly if he had the facial features of a downs syndrome child? I think not. He would then have thought about the words he was going to use, and spoken in a softer, more calming voice, and my son would not have been set off into a tantrum.

The easiest excuse is to always blame the parents. And if i really approved of the swearing and the kicking, wouldn’t I have been joining in with him in swearing at you.

I do realise that you cannot know he had learning difficulties, but when a four foot five boy sits on a toy tractor and smiles at you, it kind of gives you a hint. There are a few lovely parents around here, but we are mostly avoided by other parents in our area, and there are many children who are not allowed to come and play in our house, in case my middle son offends them. That is their choice and their loss.

My son cannot control the damage in his brain, anymore than someone with a physical disability can. To let you know how affected he is, he still cannot write his name. His language receptors are perfect, however, and the wonderfully perfect children who never put a foot wrong in their parents eyes, are the wonderful little darlings who teach him all the swear words in the first place. He mimics them, but unlike neuro-typicals, he does not have the control tower in his brain to tell him that what he thinks in his head, should stay in his head. It all comes blurting out. Master and Miss Perfect whisper them behind titters and giggles, knowing that they would not get away with using them in front of a teacher or grown up, or another child.

Anyway, back to the park. On the way out, with middle child firmly held around the arm, I decide to apologise to the parent of the little girl, only for him to turn his back on me and my child.  My comment was along the lines of, my son has a disability, but what’s your excuse?”  Ok, maybe I should have dragged him off the tractor as soon as he went on to it, and yes I do take the blame for that.

Yes I am a bad mummy.   And my bad mummy promises and expectations to everyone are these:

  1. I won’t hide my child away so you and your children won’t be offended.
  2. I will apologise for my child, only when I have calmed him down.  HE is my main priority.
  3. I DO expect you to treat my child with respect, even if you don’t like what he does.
  4. I do NOT expect you to tell me that I need to read Gina Ford, or take parenting classes.
  5. I will NOT take kindly to you telling me that my child needs a good whack / has no discipline / shouldn’t be out on the streets.
  6. I expect you to understand that not all disabled children look disabled, and if in doubt, ask the other parent.
  7. I expect you to protect your own child, but NOT to ridicule mine in the process.

So there you have it, I AM a bad mummy in the eyes of many in the general population who see our family out and about.   I am learning to care less and less about what they say, and how they stop and stare when he acts inappropriately for his age.  Would they stare at a physically disabled child?  Perhaps they would.   I have many more examples that I will post as I get time.  It really is eye opening.

Just remember, that only by the grace of a lucky genetic experience, these insufferable people are not the parents of a child just like mine.