Posted on 38 Comments

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

Image: luigi diamanti /

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?


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.

Posted on 71 Comments

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.