Finding time for everyone.

Having 3 children at home with different abilities and needs and no sleep is difficult to juggle.  I’ve made some choices over the years that people haven’t agreed with but they don’t live my life.  When Max was little he stopped sleeping.  2 hours a night was his maximum.  We moved house so Emily would have her own room and not be disturbed by Max.  Once he was diagnosed, we got assigned a social worker (they don’t do that round here now) who talked about various respite possibilities if that was something we wanted to look at.  I thought about it a lot.  Emily had been put in second place while all the diagnostics were taking place and it didn’t seem fair to her.  She needed to know she was important too.  So we chose a “Home from Home” scheme where he would stay with another family and we got 28 days a year which we took as weekends.  Fortunately we got an amazing family. Mr and Mrs F had 6 children (one still at home), lots of grandchildren and had been doing this for 15 years.  Max did whatever they were doing whether it be a family party, trip to the beach or just lounging around the house.  One of their grandchildren was a similar age and they were close for a good few years until he outgrew Max but by then Mrs. F’s youngest had a daughter and Max transferred his friendship to her.

Making the decision was not easy.  I should be able to look after my own kids.  What would people think? Would social services look at me as an unfit parent? But if he had grandparents who could have had him the odd weekend we wouldn’t have had to go down this route.  So Emily got some designated time to do whatever she wanted.  We could go shopping, she could have a sleepover, we got some sleep, we could do stuff that we couldn’t do with Max.  I tried to always keep him involved and we went out a lot but he had a habit of being in clothes shops and stripping off which didn’t make shopping fun for her.  Max still goes to his respite, he got a personalised budget at 18 so he could employ his own people and he’s been going there almost 20 years so why change something that’s not broken?

Obviously Emily got to an age where she wanted to start hanging with her mates so I had some me time finally.  Weird feeling when you’ve never really had it, but I got back into reading and found friends on line and discovered the game Runescape so I filled my time.  We took her on one holiday without her brother too, just so we could reconnect and she could choose, you know not everyone wants to ride camels, Max!

Now I have 2 young kids and Max still at home and juggling time is so tricky.  They all have homework to be done, the boys have speech therapy, I have to cook and do housework and have very little sleep.  We went to Butlins, which turned out not to be a family holiday as such but we still got to spend time with each of the kids.  I was a single parent when Max and Em were growing up which made it tricky.  Max hasn’t had a holiday for a couple of years (I’ve written about his troubles before) but this year it felt like he was ready to maybe try something new again.  Instead of spending our anniversary weekend just me and the hubs, we decided to take Max for a weekend away.  Cadbury land and a theme park, 2 nights in a hotel, the hotel did food, and accommodated 3 adults in one room.  He did really well.  There was a couple of squeaky children at breakfast the first morning, so the next morning we were breakfasting as soon as it opened (very early) so he could relax a bit more.  He chose his own food from the menu, they catered to his separation of peas from his fish with no bother and he got free chocolate at Cadbury land.  It was a success.  But that was our anniversary weekend.

Hubs took off the week after Max’s holiday.  He did the school run for me while I dropped Max off and we spent the week together.  Some of it was shopping and Christmas shopping but we had time to sit together and talk and read and have hot drinks and I  got to garden and he got to do his records thing with no one going “mummy, I need a drink” “Carry me” or stopping squabbles.  It was only a few hours a day but it was nice having some us time. Time that we don’t get in an evening because of aforementioned children “NO BEDTIME!” “mummy I need some water” “poo poo mummy” “I’m not tired” etc etc. I counted how many times we have shared the same bed and in the last 2 years we have shared it 3 nights.  2 of those were on Max’s weekend away and once at home.  Well one and a half as Oliver woke up at 3 and had a meltdown because he was alone, we’d fallen asleep watching a film- won’t make that mistake again.

We try to take the kids so one of us can have some down time.  I ran a bath and sneaked upstairs and was just about to sink into the bubbles when Oliver was stripped and in the bath like lightening.  Hubs got a book out when I set up craft time but funnily enough as soon as they saw him sat there they wanted him and no one else would do.  So now we have kind of accepted that our time together will be him taking days off work so we have the days (all 5 hours) together.  Me time- well I think that’s for other people really.  Not that we will stop trying to give each other some breathing space and recharge time but the children are formidable opponents 🙂

I think that having 2 of us makes things easier in a way, no one is left like Emily was when she was younger, so we don’t have to look at respite for Olly.  His grandparents have no kids at home now like they did when Em was little so we can always book them in for a day to do something special for one of them, and Em helps out too.  Our needs have to be put on the back burner in some ways, but that’s the same for any parent isn’t it? It just means we have to find new and more interesting ways to keep our relationship going.  On the plus side, I don’t think we will ever get complacent with each other, we don’t get enough time together to take each other for granted.  It’s funny how what people see as odd becomes just part of life to you, something you don’t think about until you come to tell someone and see their face change.

I think as soon as you become a parent you get an extra guilt gene.  It doesn’t matter what you do you always have a twinge of guilt- are you doing the right thing? Are you being selfish? At the end of the day, it’s what works for the family.  I felt so guilty sending Max to respite but Emily needed a mum who wasn’t permanently exhausted, who did things with her and made memories and put her first.  I would have had guilt either way.  I swear it’s the extra guilt gene.  Obviously what worked for me and what works for us doesn’t work for everyone, but I carry enough and I am not going to let anyone else make me feel guilty.  I may not always get it right but I’m always trying to make it fair for all the children and I’m sure they will be the first to tell me when I get it so wrong, and then I’ll try again.  It won’t be like this forever, but while it is we just work around it and make the best home life we can…..for everyone.

 

xx

Olobob Top.

Olobob Top was created by Leigh Hodgkinson and Steve Smith.  It is a programme currently shown on Cbeebies aimed at pre-schoolers.  I knew nothing about it until May this year when Oliver’s TA came out of school with him and told me about this “bigtop hill thing” programme he’d found on the computer.  It had apparently amused him no end so she was going to find the proper name and make a card so he could put it on his “working for” board.

Now I know that sounds nothing in itself, kids go through phases but let me expand.  From age 2 Oliver went to a private nursery.  He stayed there (3 sessions a week to help socialisation) until he started reception class.  He never brought me a picture home.  Never painted anything for me.  In almost 4 years I never got a painted picture, a drawing or even a scribble.  I asked school not to send home teacher made things like mother’s day cards unless he’d done it because what’s the point? That’s a personal choice, if others want them then that’s fine, what works for me doesn’t work for everyone.  It hurt a little especially as Popples was painting mad and my cupboards were full of her pictures, except a space I’d saved – just in case.  The day after Mrs D (TA) had told me about this thing he’d found on the computer I went to pick him up as usual and she came out smiling.  “Show mummy” she said to him and he presented me with this printout of a scene from Olobob Top (yes she found the right name) that he’d created himself.  He pointed to something and whispered “Tib” so I repeated it and praised his beautiful creation.  He looked quite pleased.  We showed it to Popples, I took a photo and sent it to his dad at work.  I found the blue tac and stuck it up.  He had made it!

The next day he came out again and he was smiling and Mrs D was practically bouncing. He handed me 2 sheets of paper and said “olobob top”.  I looked and almost cried- they were paintings!  not only paintings, but you could actually see 3 different figures and they were recognisable as Tib, Lalloo and Bobble.  This was the start of a new chapter for him.  Usually uncooperative at craft time, he painted, he crayoned, he drew on the conservatory walls (who cares it’ll wash) he made play doh models, he made characters out of stickle bricks and he verbally requested “computer”.  He often speaks in a whisper but some words were getting louder.

The biggest thing was reading.  I know I’ve talked about Julia Donaldson’s books allowing me to spend quiet times with him, but things changed when Mrs D gave him 2 books for his summer gift.  These were his books, they had his name in them.  One was a sticker book, and the other was a flap book.  He doesn’t like stickers.  I tried to show him the stickers go in the book to make scenes but I got screamed at “NO MUMMY! IT’S MINE!” ok fair enough.  He took his books upstairs out of my reach.  That night my husband put Max to bed and when he came down he told me that Oliver was currently sticking stickers all over his bedroom.  He didn’t know what to do because he doesn’t do stickers so I went up and said “what are you doing?” “Sticking” was the response – TO A QUESTION! “Sticking olobob top” he expanded while I stood looking at the stickers on the carpet, duvet, wall, pillows and chest of drawers.  “That is fabulous sticking! You are so clever. It’s beautiful. Well done!” The pride on his face nearly made me weep.  The I got invited onto the bed to look at the flap book.  I tried opening it but it got pulled away so I sat back and let him lead.  Eventually he moved it to within eyesight and pointed to the figures naming them.  He’d point, say the name then look me in the eye (we don’t demand eye contact in this house) and wait for me to repeat it. Then he’s nod and reconfirm.

Our next reading session was instigated by him.  He pointed to a pink bird on the cover and said “BIG” but I thought he said pink so I said “Pink”.  He shook his head, and I thought I was going to lose him, he doesn’t like it if I don’t get it straightaway.  He sat there and repeated it but we were having a miscommunication.  Eventually he took his finger and ‘drew’ the letter b on the bed, then I then g.  Light dawned “oh Big! big bird”. He then turned the book over, pointed to another bird and said “little” I repeated it then he pointed to another bird and said “small”.  I didn’t know he knew that word! We were having a conversation.  He was waiting for me to repeat, giving me eye contact and being in charge.  I didn’t touch the book.

Every day he was saying “upstairs, Olobob Top book” and we were reading the way he wanted to.  He was gaining in confidence and trusting me not to take over and let him lead me for a change.  One day he pointed to Tib and said “it’s Bobble” so I copied and said the same, he looked at me and burst out laughing and said “it’s not Bobble, it’s Tib” oh dear, silly mummy.  And that was the game that session, making mummy look a fool! But it paid off because the next day he finally opened the book and I got to see the inside, but just the first page. “Lalloo’s dress” so I added the word spotty. “Tib’s pants” so I added the word stripy.  Expanding his vocabulary with no pressure for him to say it back, just giving him a word he might not have but if he chooses not to use it at that time that’s fine.  He told me shapes, fish, trees, the other characters.  If we are making stuff he says “you could make it up” and gets stuck in.  He also has expanded his wardrobe thanks to Tib’s stripy pants, which is lucky as he ripped the bum out of his tartan ones swinging on his curtain pole, and all his other jammies were stripy.

2 more books were released (and bought), although I’ve not proved myself worthy enough to be able to read Norbert’s shop yet I live in hope 🙂 We were talking about Christmas with Popples and he came over and said “Olobob top toys, yes, Christmas” so I had to tell him there were no toys which we confirmed by googling, so he asked for “dvd yes” and again I had to show him there wasn’t any. He did his sad face but quickly rallied and asked for Go jetters instead.  They have a laptop where he goes on and plays games, makes characters and scenes etc.  He asks for it “computer cbeebies” or whatever he is after that day.  He chooses to read with me, he does crafts, he has taken a passion of his and instead of it being confined to one repetitive game or action, he has brought it into more aspects of his life.  He hums when he is doing things now, he talks quietly to himself (still a lot of jabber but some words) when playing, he seeks me out to do things instead of me having to instigate it, he knows his choices are important now.  They always were but I don’t think he knew that.  Now he knows if he wants to talk about the size of birds for half an hour, then mummy will stay and have as much enthusiasm at the end as at the start.  I know there is a long, long way to go.  I know that I may never have a conversation with him that runs along more conventional lines.  I know his language is still miles behind.  I know the sound of his voice, I know his laughter, I know he can joke, I know he is clever, I know that what he gives is the best he can and I know that’s enough. He’s calmer, he’s more patient and he’s more willing to try new things.

I got a painting off my son.  He was 6 and I got his first painting.  That was enough, everything else that has happened is a bonus.  We were lucky he found something he felt so strongly about that he wanted to share.  I know that Leigh Hodgkinson, Steve Smith and the Olobob’s don’t realise the world they’ve opened to my son has helped him, and us, so much.  Thank you

xx

Why I blog.

I’d like to able to say I blog to do something useful like giving advice, being informative or a fount of wisdom like a lot of blogs. You can find advice on travels, hobbies, cooking, probably anything you can think of. People have very interesting lives!

I used to keep a diary. I’d write stuff down but I’m sure the people closest to me worried that I’d written about them and wanted to know but respected the diary rules too much to check. So for me blogging is really about just being a public diary of my thoughts and day to day life. Then if my husband and daughter really want to know what I’m really thinking they can read about themselves here. I don’t know if they do. I gave them the link, if they want to look they can and then talk to me if bothered. She requested I maintained privacy which is what I try to do with names and no photos, which is fair enough, but everything else is my truth. I say my truth because I suppose in any situation, everyone’s perspective is different.

So I got a blogging subscription. I didn’t want adverts I had no control over and I wasn’t joking when I said it was cheaper than therapy. A fellow blogger mentioned counselling and the cost the other day and I counted up how much we had spent and for not much return really. I’ve done counselling 3 times. The first time was an emergency 6 sessions block from the nhs. The second time was couples counselling due to outside interference and third was to fix things with hubby’s parents that they said they would pay for and attend and ended up not paying for any or coming to any that I was involved in. I think we have spent at least £800 on counselling. He got nothing out of it because he put nothing of himself into it. He doesn’t like people knowing his business, or showing emotion so he said “the right things”. It helped me but my opinion was if I’m paying for this then I may as well use it properly. Obviously I’m still a work in progress.

I started writing for me. To put down how I felt, to try to make sense of things. When you are talking sometimes hearing something out loud can make you think again or in a different way, so I hoped writing would do the same. Like I’m writing to someone not just writing in secret. I don’t know if this makes any sense, I’m rambling! Hubs said “will you be sad if no one reads it” and I answered no. He wanted to make sure I wouldn’t feel like a failure but I explained my reasoning and he was happy. I feel like a failure in so much of life, he was just looking out for me. Every now and then he asks if it’s helping and I tell him yes it is. I probably spend more time reading blogs than actually writing! I found a good gardening one. I found some written by people with asd and parents of asd kids, people with anxiety like mine, people who are starting life after uni, a great one who explores personalities and why we do things (Dr Perry- I’m always sending his links to my husband about the narcissistic personality blog posts), and some who just grab my attention as I’m flitting through instead of doing the mountain of chores I have lurking in the background.

What I say next may make me sound like a right saddo but I’ll say it anyway. I find I’m invested in these people. I cheer at their good news, cry at their heartbreak, listen to new ideas, remember how I was at the beginning of my own autism journey- they feel like people I know. I talk to my husband about them in the evening “we aren’t the only ones going to tribunal” and then proceed to tell him all about the troubles of others. And the triumphs. Due to all kinds of reasons I don’t have a sparkling social life. I don’t have many friends. I don’t mind, I’ve never been very social. But on line I get to “socialise” with a whole range of people I would never meet in my daily life and I’m thankful and grateful.

I don’t feel alone anymore.

Xx

“I don’t want to be your wife anymore”

Those were the words I finally had to speak to my husband a few weeks ago.  They were not said in anger, they were not the result of a row.  Since being married I feel he has become more secure, which is great, but I have felt less secure.  We stopped talking, he’d play on his phone of an evening when we were supposed to be watching a film, he’d come in from work and be on his phone, and yet when it came to him wanting to do something, we were all supposed to just be in good moods and grateful he wanted to spend time with us.  As you can imagine, feeling like a piece of furniture is not conducive to a great relationship so we did have a row about his phone and lack of interest and he said he’d try harder, especially with the kids, and he has.

I still didn’t feel right.  Instead of looking forward to him coming home, I dreaded it.  I hoped he’d have to go away for work more than I usually did and I decided that I needed to figure out what was going on in my head.  I don’t like doing that.  I usually bob along, making sure everyone is happy and that’s enough, except it’s not is it? Not really.  I file things away in my brain and don’t deal with them.  I’m not good about talking about my feelings either, it’s hard enough figuring out what I’m feeling, never mind explain it to someone else.  I was really unhappy.   He knew I was unhappy.  I kept talking about how I didn’t understand the world, how I never have understood it.  I don’t “get” people and their games, and why they lie, and why they don’t just say what they mean and I feel like I don’t belong to anything and never have done.  Except for my kids.  I fit with them.  They don’t have expectations of me in the same way.  They expect me to be there and look after them, obviously, but they don’t expect sparkling conversation or little amusing bon mots, I’m just there to be mum which I have done for, like, ever- so it’s something I know I can do.  Kids are easily amused, you just act daft and tell poo jokes.

And that’s when I knew what the problem was.  It’s the expectations that fill me with anxiety and unhappiness and the fact that I know I can’t fulfil those expectations.  I am not like most people, I am a nervy, anxious person and according to my husband very black and white about certain things like lying.  I don’t understand lying.  It drives me insane.  Why bother telling lies- you will get found out then trust will be broken and I will think you were trying to make a fool of me.  Ok you don’t have to be blunt but there’s nothing wrong with being honest.  Anyway, I’m going off the point.  The point is I can’t be the wife he expects, society expects and that I think everyone expects.  I couldn’t be the daughter, the sister, the girlfriend that was expected and I’m tired of failing.  So I told him I didn’t want to be his wife.  I told him if he wanted to go and find someone more “normal” he was welcome to, and I wouldn’t hold it against him and we’d make it work with the kids.  As I said, I am not good at expressing myself and the conversation went on for quite a while, as he was checking if I wanted to leave (no), if I was looking for someone else (no), if I was having another breakdown (no).  I just wanted to have my friend back who used to laugh with me, support me, have fun with me, talk nonsense with me, and all the other things we used to do.  I told him being a mum of 4 with each child having such great needs, and the lack of sleep meant I couldn’t be “a wife” the way he wanted.

Then he asked what I needed from him.  I told him I needed no pressure and I needed to know what he wanted.  He wants to be with me.  He wants us to stay a family.  He wants me to deal with everything that’s happened over the last 40 years, however long that takes, and he wants me to be happy.   He told me he didn’t give a **** what society expected.  He told me he always knew I wasn’t like everyone else, then proceeded to list all the ways in which I was different.  The list was quite extensive!  But, he said, I made life more interesting and challenged his ideas on lots of things and came at things from a different perspective.   Him being distant didn’t help our relationship but me being unhappy and maybe pushing him away definitely didn’t help.  Catch 22 situation.  So we are together, in that we are sharing the house and the children, but also back as friends.  Since our chat I feel relieved that he is willing to stand by me while I sort through my head and that he doesn’t expect me to change with regards my “oddness”.  I have found someone I don’t have to pretend with, pretending is exhausting.  I might get a chance to be myself.

I know this may have been a really selfish action, it’s all about me kind of thing, but I didn’t want him to stay and get nothing from it.  He’s allowed a life too.  I’ve told him he doesn’t have to do everything with me.  I’m not keen on going out so if he wants a night out with mates he can do it guilt free.  It’s a work in progress though as I’m not the only one in this relationship with issues.  Just as he has helped and supported me, I will do the same for him, when he’s ready.  We are happier now.  I don’t know how long it will last, I suspect our relationship will always have problems but I think we both feel a bit more confident broaching things with each other now.  If I was going to be with anyone, it would be him, we just have to define what “wife” means to us.  For the first time in a long time I feel a little bit optimistic about the future.  Just a little bit.

 

xx

He’s not naughty! by Deborah Brownson

hes not naughty

I’ve been trying to find some help on how to explain to a 3 year old the complex world of autism.  She has 2 brothers on the spectrum and asks questions which I do try to deal with “why does Max wear ear things?” because noises hurt his ears so this makes them softer so he can listen without it hurting.  The questions keep coming and the word Autistic has been mentioned which resulted in the conversation taking a weird turn “stick? like stick man?  Is he going to get stolen by a dog and get lost?  I don’t want my brother to go”.

Anyway I came across this book “He’s not naughty” when I was doing some research.  A lot of the books I came across had scathing reviews and many of them were about aspergers where my boys are further up (or down?) the spectrum.  This book also mentions aspergers but is not focussed on it exclusively.  It’s about the issues that people on the spectrum face, the senses are broken down, strangers, behaviour, bullying, feelings etc.  and the trauma it causes them.  It is also beautifully illustrated so although the text may be a bit too much for my 3 year old, the pictures are good for starting discussion.  It’s easy reading and explains things simply, so is useful for anyone starting out on an autism journey, be that a family member, friends or teachers.

It’s written by a mum who lives with autism daily, not by a clinician and it’s very matter of fact.  It doesn’t gloss over anything, it just explains things from Jake’s point of view as told by his friend.  I don’t think my review has done it justice, it’s a beautiful book and I see my sons in the illustrations.  It takes a complex disorder and turns it into manageable chunks.  It’s listed as a children’s guide to autism, but I think it’s an all age guide to autism.  It’s overwhelming, and you get used to speaking in jargon and doctor-ese, this book has put me back on the track to explaining to all ages that He’s not naughty!

 

xx

Playing together

Oliver and Popples are 2 years apart, he’s in year 1 now and she’s in nursery.  I always worry that as she grows she will leave him behind and they will both have an element of loss and loneliness.  Yet as I watch them interact and I look back on videos (I’m old school I always call everything recorded “videos”) I worry less.  They have a bond.  They may not always understand what each other is trying to do but they try to get it.

Oliver got hold of my tablet and was watching the videos of him and her playing.  One game he invented was to shout “aaaahhh” at her and she did it back and they got louder and more giggly.  One of them was of Popples putting a happy meal box on his head and saying “burger head” amidst giggles whilst he chased her about with the box still on his head.  She watches him play and I can see in her eyes she doesn’t quite get his obsession with building towers, but then I see her face change, when she wants to play with him, and as young as she is I can see her figuring out how to insert herself into his world and be accepted.  Usually passing a brick, or counting or naming the colour and she’s in.  They have eye contact and a common goal and he jabbers, she talks back- leaves a space for him to answer- then answers for him if there’s no verbal response with a “yeah?” at the end.

He sometimes wants to play with her, he hangs back a bit more, obviously unsure of her more complex games but she notices and invites him in.  They like doing “shops and cooking” as he can name foods and can play tea parties, drinking pretend drinks and nomming pretend food.  He likes to chase, monsters is a popular game in our house accompanied with lots of screaming and bumping into each other.

In the bath last night they were blowing bubbles in the water, he took his turn then looked at her expectantly- being tired she missed the cue, but when prompted, joined in.  Then a bout of screaming at each other and splashing water all over the floor and it was hair washing time.   Laughing he used an octopus toy to rinse her hair, she laughed and then used a fish toy on his hair.  If I had done that there would have been tears, but it was their game and they played for an age- until there was hardly any water left in the bath!

He has confidence in a lot of situations that she lacks and she looks up to him to see if it’s safe.  She is wary of parties and changes at school, but he had his party Wednesday at school so when it came to hers on Thursday she was ok about it cos “my bruvver had one asterday”.  She helps him with his speech and making sure I know what he wants, she accepts him and loves him and looks up to him.  He’s her hero.  He helps her with her confidence and being brave and climbing.  She wrecked his game the other day and where 6 months ago he would have smacked her he shouted “Peppy.  Go away!”.  The fallout was short lived,  It’s much more fun being pals.

I wonder how much is instinct.  When something scary happened when they were playing upstairs he got her into the bathroom and shut the door- obviously the safest place upstairs.  Is that just what older siblings are “programmed” to do?  (obviously they weren’t alone long, certain footfalls a parent hears and knows that it’s not good).  Although they have rivalry over toys, time on knees etc I think their relationship is really good.  I love watching them play, especially when they don’t know I’m watching.  I think I need to worry less- that bond will only grow stronger, so I will just enjoy watching them and their relationship that is pretty much 50/50.

 

xx

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