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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.
38 thoughts on “Respite – and the future for our additional support needs children.”
Our son also goes to respite. We were ‘copers’ for too long and by the time we reached breaking point it took nealry two years to get the respite organised. I keep trying to persuade friends to sort their respite out but they are ‘copers’ just like us.
My son is was off school today with sickness which now means the carer can’t come in on Sunday. Rest of the family away .. thank good ness for Tesco deliveries!!
Thank you for sharing this well written, thought provoking post. The future can look so bleak and scary, but let us hope that you live a long and happy life, and that at some point in the future the benefits system is strengthened, not weakened into non existence.
A brilliant post about a subject I worry about every day. I don’t know what the answer is, I wish I did. I have considered moving to another country for as much as I love Scotland. But will it be any different?
HI, had to reply to your post. How hard it must be for you to have a such a worry on your shoulders and yet feel so helpless to ensure the future is as bright as it can be for your son. Those in ‘power’really need to get into the real world and see just what is happening out here, I so wish their bubble would burst and it would realise that the vulnerable need looking after, and that only family will do that for free.
I sign any and every petition going about this subject, only a small thing I know, but do it in the hope that one small thing added to someone elses small thing will eventually develop into one large thing! x
Why do you never say any of this when we see you? You can speak to us at any time, you know that. x
No reason, there is always just so much to talk about lol..
This is a heartfelt and important post. Well done for writing it.
Thank you Ellen. x
It’s one of the main things we worry about – adulthood and the independence that is supposed to come with it. I don’t know whether living in another country would be better for me and Amy, this useless government are pushing each one of us to the brink. If you have a good education, live in The City and come from a wealthy family, you’re laughing. God help you if you don’t.
More and more of us are falling into the god help you category as most of us are not in the city or in oil, and finding it harder and harder to find work, or keep businesses ticking over as people are just not spending the money any more.
I just don’t get where the government thinks that putting so many people out of work is going to help pay back the deficit as benefits bill then rises. I’d love to know just how many more people are claiming benefits now in comparison to a couple of years ago.
The haves are going up and the middle / working classes are going down. I don’t see anyone at the upper end of the scale bearing the brunt of anything whatsoever.
Cuts to disability benefits are going to affect my children when they’re older, says @scottish_mum:
Enjoyed your post, it is very emotional. As parents we all worry about our children so I can’t imagine how difficult it must be to have the additional worries you are dealing with. Thankfully your child has you around now and the ‘now’ is the only thing we can control.
You are right, the “now” is how we have to move forward most days, tho every so often it comes back to haunt us. It can’t not.
You have me in tears of sadness and frustration at this moving and poignant post. You have incredible strength xxxx
Thank you for the lovely comment. I do what I have to, which is what most of us do I guess. The future is a worry when we know they can’t and won’t be able to look after themselves when they grow up.
@Scottish_Mum No problem. Echoes my thoughts/feelings. Bleak future for those who are ‘different’ – Dickensian levels of neglect? 🙁
@Scottish_Mum it was a very moving blog – well written
@Scottish_Mum You’re welcome. Sorry you’re in that position. Nobody should have to worry about what happens to their kids when they’re gone.