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.
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.