Jack was diagnosed with Autism when he was 2 years old. At this time, I was advised to contact the disabled children’s service and speak with a social worker and that they would be able to advise me of the services available to us. I was reluctant at first. It turns out, with good reason. My very first experience of them left me feeling belittled and hopeless, and they were only there for half an hour. In 10 years, we have had several social workers allocated to us and I’ve only ever had 2 that were any good.
Over the years, we have spent countless hours answering questions about Jack. From his birth to his likes and dislikes, and everything in between. We’ve filled in forms, read reports, and then sent them back to be rewritten. Every time we have a new social worker, it feels like starting all over again. Even when you have the same one for a while, you can feel like you're going round in circles.
Even the good ones have their hands tied. Society, and even social workers themselves have the perception that they swoop in like superheroes and save the day, but in reality, it’s more like they are your kryptonite. Sucking your power from you and leaving you weak and deflated.
They get away with this because parents like us don’t have the time, energy or networking available to them to do anything about it. You have to basically get a degree in disability law, nursing, social care and education just to have a clue. Looking for free advice is like finding a needle in a haystack too. Well, you can spend 3 hours on hold to a helpline whilst your young person wrecks the joint…before batting your phone out of your hand to play on it.
Even those who get help have limited options. The assistance you need just isn’t there. It’s a one size fits all approach and if your child doesn’t fit in the ‘pigeonhole’ then they’re not getting help.
Social workers try and give you the minimum. They are drilled and trained to lack empathy, only listen to the ones screaming the loudest and protect the councils’ finances. You’d honestly think it was coming out of their own pocket. I sometimes wonder if the social worker whose families cost the least get the biggest Christmas bonus! Any social workers who really care, either leave or get fired.
Visits are another waste of our time. In my experience, they literally just come and look at them for a few minutes. I had one who went upstairs and because she didn’t know how to interact with Jack, she just started pushing all the buttons on his calculators. Something you do at your own peril!
One time Jack stole her phone (despite her being warned that’s what he would do if she didn’t put it away). As he ran, we shouted to her not to chase him or he’d throw it. She wouldn’t listen and ended up face planting the mud in our garden, with her phone over next doors fence.
Another was there when Jack started to become aggressive, and she couldn’t leave fast enough. She didn’t even call to check if I was ok at a later date.
There have been times when I have given up all together in trying to obtain the support I need. Often not even telling them about incidents or things I am worried about. It’s almost more grief having them involved than not. Obviously, these days it is compulsory. When a child has the level of need Jack has, you need all the paperwork and reports from social care to have a chance of getting any help at all.
However, there are days, when I wish I could just wash my hands of them.
I got into a mind set of never sharing anything positive with them about my son at all, in case they use it against me. I can’t freely celebrate my sons’ accomplishments in case services would be removed. Services I still very much need.
Usually, they wait for breaking point. Once you’re in crisis, they often end up sending your child to residential. Residentials are few and far between, so that means your child is miles and miles from you too. What I also found so hard about Jack being in residential was the extremity of it. I’d gone from having no respite or help at all, to him being away from home for 43 weeks of the year. All I had ever wanted was a short breaks provision that could meet his need for some of the school holidays and a school that stimulated and cared for him. Perhaps the odd after school club too, so we could spend time with our other son. If I’d have had those things, he would never have ended up in residential.
When it comes to respite, appropriate short break provisions are few and far between. They are often badly run by in experienced or poorly skilled staff. Because they are in affective, they cause challenging behaviour and then those children are no longer allowed to attend. Due to the cost of funding these provisions, the children who need the most help are getting the least. Nothing is built around need.
The other option they give you is support workers. This is also unsuitable for many due to the low-level skill set and a failure to listen to who the young person needs to be matched with. The person often needs to know your child extremely well to be able to keep them safe, which is a commitment many are not willing to partake in. There are many shortages of good, caring staff in this profession, and no real incentive for this to change. People can get equal pay from a far less stressful job. They don’t have to study to be one, and there are no benefits or rewards for doing it well. I’m sure there are people who genuinely care about the vulnerable people they work with, but these are unfortunately rare. I have witnessed many people in the disabled community out with carers who do not interact with them or sit talking to another worker and completely ignoring the person they are paid to care for.
Now I’m not saying all social workers are bad either, as I said, we have had a couple of good ones. However, there needs to be major reform and fresh ideas for how to support. Councils are building upwards. With 500 families in the space of where there would have been 20 houses. All that council tax, yet no more services. No extra doctors, no extra schools, no extra special needs provision and short break facilities. Eventually this will meet a crisis point and then what?
I’m often asked by them “what do you want?”
I want a safe and nurturing environment for my son to attend as short breaks provision, with facilities and high staff ratios. I want those staff to be highly skilled, trained and experienced. I want social care to work closely with SEN in order to encourage schools to open after school clubs for children in special schools, that will be funded. As well as opening specialist after school and weekend clubs in the community.
I want many more services that help parents and schools use positive behaviour support and help with managing different types of behaviours throughout their lives.
More useful training courses provided to parents, other than some introduction to Autism 4-week course and you’re set for life.
Regular OT and Speech therapy sessions (You will be written off from the service very quickly, and that’s if you’re lucky enough to even get an appointment).
I want parents to be listened to and their need for some quality of life to be respected.
I want social care to put things in place BEFORE it reaches crisis, to prevent children from ending up in residential placements.
I don’t want to have to fight for what my family needs to be equal to any other family. We don’t want to be an exceptional family, just an ordinary one.