How can people be so mean?

Max had a placement in a park that had a café.  It was, and is, intended for adults with disabilities to provide a safe place for them to learn skills.  Life skills, relationship skills and maintenance, serving in café, cooking etc.  Each programme is tailor made to each clients abilities and what they are wanting to achieve.  They help support more able clients back to work, helping with cv’s and work focussed activities too.

Max has been there just over a year.  It’s expensive as he needs 1-to-1 care but it seemed to be a blessing when we found it so we applied for funding and got 4 days a week at a £100 a day.  It used to be run by a lovely bloke who retired a few months ago.   Max was given a programme of shopping, doing basic gardening like weeding, cleaning café tables, groundskeeping and going to into town to get used to being in the community again.  He loved it, he was happy, so we were happy.

A few weeks ago, things started to change.  It doesn’t sound much but the staff weren’t there to meet the clients on time, often rolling up, up to 15 minutes late.  Last week I had an appointment with Oliver and I went to drop Max off first.  No one to meet him so someone went down to the meeting room to get his stand in 1-to-1 as his usual one was off sick.  He came back with the message “he’s busy his mum’ll have to wait with him- he’ll come when he’s ready”  so I said I couldn’t wait as I had an appointment, and a lady member of staff sat with him when I left.  I didn’t feel very comfortable about the attitude but had to rush off.  It was only later telling the story to the husband that I started thinking about the changes I had noticed.  The clients had started waiting outside, in the rain at times rather than in the café.  Nothing was as clean as it used to be.  The table Max had been allocated after his meltdown so he could eat in peace away from the noise was still reserved and when I asked I was told he still went there for his morning brew and his lunch- it’s winter in the north west of England!

His usual 1-to-1 got in touch with me and said she wasn’t coming back.  And then proceeded to tell me why.  Horror story after horror story came out and I felt sick to my stomach hearing about the way these vulnerable people were being treated and spoken to.  Max had been shouted at by a staff member, they had taken the piss out of him and the noises he makes (he is non verbal), he’d been isolated from the group, everytime he found something he liked doing they took it away from him, his shopping visits and community visits had stopped and he was not allowed to be helped in his work focussed chores.  We had made it clear from the start he wasn’t ever going to be work focussed hence his programme of skills being designed for him.  Other clients were referred to in derogatory ways depending on their disblilites, swear words used and tasks set that they could never complete.  I asked for evidence and she sent me a text she’d received from Max’s new 1-to-1 complaining about his high pitched noises and saying she had to come back cos he couldn’t cope with him.  I felt so sick- he only makes high pitched noises when distressed so what the hell were they doing to him?  He can’t tell me.

I asked why she hadn’t said anything to me and she said she’d tried to deal with it internally but management weren’t bothered.   We decided to withdraw him .  I don’t want him somewhere he is going to be treated like a burden.  We’ve spent the last 2 days on the phone going through the proper channels to have him withdrawn and all payments stopped.  Now he has no support in place but at least he’s safe, at home with me.  What I don’t understand is how sick do you have to be to treat vulnerable people like this?  Why work at a place if you don’t like the people you’re working for?  We, and the other clients, pay these peoples wages.

My son has now lost a placement where he was happy for a year due to sick bullies.  I don’t know what’s going to happen next for us or for the centre.  I don’t know if social services will keep us informed, I know his personal budget that had just been approved is now no good.  But I know he is safe.  I know it will be hard work for me, but I know he is safe.

I have cried so much over this, how can people pick on my boy like this?  And how can they keep getting away with it?  I am sad for Max mostly, he’s lost more independence and he didn’t have much to start with.  Why can no one see that he is funny, loveable and so eager to please? Why do they have to ruin the little he has?

He has his family who love him, I hope somewhere he knows that and that now he feels safe.

 

xx

 

Julia Donaldson and Axel Scheffler

These guys have my eternal gratitude.  I am a big reader as is my husband and my girls.  They always loved snuggling and reading and discussing pictures.  When I was teaching Max to read I bought the Biff and Chip books that Emily was reading in school.  It worked to a degree, he could read the words but it was mechanical.  We discovered The Gruffalo by accident- I was just looking for something different, bright and options for voices and discussions.  Now he has what used to be termed “classic autism” so to get him reading was an achievement for him but he did do the voice for the owl.  Very proud day when he did the Twit-two.

Oliver, however was totally disengaged.  No interest in any books.  I still did reading at bed time.  I tried the lift the flap Spot books, Peppa books, Little library book sets but he wouldn’t sit with me.  Then my aunt bought him the Gruffalo sound book and things changed.  Being a button presser meant he couldn’t resist the book.  He got fixated on certain noises which was fine, he pressed and I copied the noise gaining smiles and eye contact.  Then we got to the stage where I could read a couple of pages with him pressing the buttons.  It made me so happy that I could sit with him and actually engage in a mutual joyous activity.

We found a dvd set of the Gruffalo, Gruffalo’s child and Room on the broom.  So we bought it and let him watch it.  He was engrossed from start to finish and that night we got through the whole book.  I had to do voices, and roars but does it matter if you sound like an idiot?  No.  It really doesn’t.

On Popple’s birthday she got the witch from Room on the Broom as a gift which Oliver immediately took too (we ordered another one on next day delivery) and the shops had 2 for £6 on a lot of books which meant they could have their own copies of the books instead of me having to sneak them out of Max’s room and sneak them back before he took his nightly inventory.  Room on the Broom was a massive hit!  The squealing when the dragon was coming was music to my ears-anticipation and appropriate reaction.  I started leaving gaps when I was reading familiar stories and he sometimes filled in the missing word or I’d say the wrong word and his outrage would make him correct me vehemently.

Stick man was on over Christmas and we taped it and showed him and it seems that once he’s seen it he is much more amenable to reading the book.  Although he does “read” a lot more books now even if he hasn’t seen them but watching them seems to improve his joining in and language.  We also got given some audio cd’s (they need replacing now they are worn out and skip) that we listen to in the car, after the story there is a song that we all join in with.  The Book People do a lot of discounted books and we got ten paperback Julia Donaldson books for a tenner which we gave him for Christmas, came in a very handy carry bag too.  He opened them first and sat with his room on the broom book and his witch reading it a nd “ziggity zoom”-ing.  He now has all the charcters from Broom which we re-enact the story with.  He has a Gruffalo and the mouse but the mouse often ignores the Gruffalo and wants to eat “Oliver crumble” giggles and tickles aplenty.

Popples bought him a stickman for his birthday.  He lives in his bed and is not to be touched by us mere mortals.  The Gruffalo’s child is an opportunity for squeals and lots of AHA! OHO! He likes pointing to things in Snail and the Whale, Squash and a Squeeze gives us animal noise chances.

So my son who would not read or look at books now insists on his bedtime story and snuggles and points and says some words.  Occasionally the witch gets “whooshed” across the room but it’s all joining in.  His witch is his best friend, but she deserves a page of her own.

So I will be forever grateful to the two named above for their books.  The repetitive language is not boring (as is it in a lot of books), they are bright, they engage all my children and it’s given me an opportunity to do something with my ASD sons that makes me feel close to them which is often difficult with a child with autism.  Thank you Julia and Axel, I hope they know how much they change lives, it may only be a small thing to some people but having a child snuggle on my knee and share a book is a huge thing for me.