DLA The final

As you may know we have been fighting the DWP in regards to Oliver’s disability. They downgraded him, we disagreed. We appealed, they dismissed us. We filed for tribunal and got letter of support from our doctor and I dug out all relevant information from his vast file. We sent off photocopies of prescriptions, the letter, a further explanation in what we have tried, an explanation of his presentation of autism, EHC’s ……in short everything!

Our appeal was accepted by the court and we were told to await a date and information on court choices closer to us. We decided that we would go wherever gave us a date first.

Today I received a letter from the DWP stating they have changed their minds and have awarded Oliver the high rate of care component and low rate of mobility. So we don’t have to go to tribunal now.

From speaking to some parents about this I found that a lot of ASD kids had been downgraded in the dla scheme and the parents were just too exhausted to fight anymore. Is that what they are relying on? Parents not having the energy to fight to save the government a few quid? They have the money for weapons and HS2 which we don’t need but not the money for the vulnerable in society. I don’t blame the parents, God knows I felt like giving up, we have enough to do without having to fight for every last thing our children need but it was the principle of the thing. How can someone who has no knowledge decide on my child’s disability?

For us we would have taken it all the way with the risk of losing. It was important to have our voice heard but it was more important to have Oliver’s voice heard, the challenges he faces daily, the help he needs to become all he can be. I choose which battles to fight now, there are too many to take them all on and I can’t physically or mentally fight them all. I triage them; what he absolutely needs, what he’d like, what we’d like if we didn’t know about the current climate of cutbacks. I’ll probably get it wrong at some point, maybe already have. But I try my hardest every day for him and he tries even harder than me.

Xx

Scarlet fever and antibiotics

Oliver had his birthday recently. He woke up with a red cheek and a cold. Thankfully it didn’t ruin his day, he opened presents, opened his cards and was quite social. By the time of birthday tea his other cheek was red. We put it down to sugar or an eczema flare up as he didn’t have a temperature and showed no other signs.

As he seemed fine I sent him to school as normal, explaining to the teacher about his lack of temperature but with the proviso they called if he showed any deterioration. He was fine at school, didn’t eat much but that’s not unusual. He refused his dinner, stopped drinking and went to bed and to sleep on his own! He slept through. The alarm bells were ringing when I woke at six and he was still asleep.

Rash had spread to his arms, got an emergency appointment as it seems scarlet fever and slap cheek is going around. The doctor checked him over and debated between the two possible diagnosis. After discussing his temperature which was over 38 last night and his reluctance to put anything in his mouth he decided to treat for scarlet fever. The lack of eating and drinking suggesting sore throat. The fact he had taken calpol the night before with no fight meant he felt rough. He had chicken pox a couple of weeks ago so we have been given antibiotics. Four times a day for ten days of the most disgusting medicine possible. As you can imagine, I’m thrilled.

Oliver does not like medicine. Took me months and many bottles to get him to take liquid paracetamol. Now I present him with this stuff. He understands “sore” and he knows when he has calpol he feels better. I think he thinks I’m trying to poison him with this stuff. I’ve put it in juice, he refuses to drink. I try to bribe with goodies if he takes it. I even resorted to pin him down and try to make him swallow but failed. He’s never had antibiotics before. The rash is now everywhere. With him having just had the pox, I’m more concerned than I usually would be over this, there can be an increase in other things like pneumonia so I need to find a way to get this down him. Usually if it meant that he could fight it on his own but would stay off school then I’d go with that, as exhausting as that is. He can go to school 24 hours after starting antibiotics but that’s not the reason I need him to take them. I’m terrified of complications because he isn’t a healthy eater or sleeper and his immune system is not the best so he’s a prime candidate for complications.

How do you explain to him that this will make him better when it’s so vile? We are hardwired not to eat “yuk”. I’ll try some in yoghurt later and see how that goes but why can’t someone make medicine that doesn’t taste like crap? It would make my life a little bit easier. I’ve tried the mummy has some/Oliver has some, in the hopes of reassuring him but he looked at me like I was mad. It can’t be just us who have this problem. I’m tired of being the bad guy when I’m just trying to help but that seems to be par for the course in this family at least.

Xx

7 days, 3 hospitals, 2 pox and one pizza ceiling.

It has been a very eventful week. My daughter had a couple of worries with the baby not moving and thinking her waters were leaking so she went to the doctor who immediately sent her to the maternity assessment unit as her blood pressure was high, her pulse was racing and her temperature was up.

At the unit, they hooked her up to monitors, started a trace on the baby, called a consultant and told us they had 15 minutes to treat if it was sepsis and may have to deliver at 33 weeks.  As you can imagine, this did nothing to help the blood pressure situation and with the consultant appearing in 10 minutes (I know, right, you never get them to appear that quickly) we were a bit worried.  I had taken her to the hospital, her husband was at work.  I had a word with the midwife who said to phone him because if they have to do anything it will be done quickly.  So they hang a drip with fluids and paracetomol to try to get the temperature under control.  She had a cold so then they were thinking flu, did swabs, took blood, and then moved her to HDU on the labour ward for 1-to-1 care until stabilised.

Thankfully, they managed to get everything under control and four days later she was released.  Unidentified infection treated with broad spectrum antibiotics, baby measuring fine.  Phew!  Lets go back to enjoying the easter holidays.

2 days later I get a text off one of the mums at school.  Her son has chicken pox.  He is in the foundation unit same as Popples, they have FS1 and 2 in the same unit.  I said I would keep and eye on Popples and if she didn’t get them I would be bringing the kids round for a pox party.  Didn’t need to go anywhere, she had a couple of suspect spots til after the bath- then she was head to toe, even in her hair!  Brilliant!  They could get the pox finally done with and not miss any school.  Oliver showed no signs except a snotty nose which he tends to have until spring anyway.  She had a raging temperature and couldn’t sleep due to the discomfort, so that was fun.  The calamine cream didn’t seem to work, so she has had a lot of cool baths.

2 days after that I was putting up the trampoline they have got for birthdays in the hopes it would save my furniture.  I managed to get the springs onto the frame which made them happy and they sat on it whilst watching me sort out the safety net thing.  As I was opening the metal rods that go at the top to keep it stiff and in place, I didn’t check to see exactly where they were.  They sprang open and caught Oliver in the eye.  Totally my fault, I know better and I should have checked and rechecked.

He started screaming, under his eye was bleeding and I applied a cold compress and tried to check his eye.  He wouldn’t let me look, I couldn’t drive so I asked my daughter to take me to A&E.  After 3 hours a doctor tried to check him but with him not being very cooperative and just alternating between “no, hurt” and singing get well soon, we didn’t get too far.  As a precaution he sent us to another hospital 20 minutes away that has a specialist eye department. Thankfully the nurse there let us jump the queue as by this point Oliver was really agitated.  The nurse and I had to hold him down, he had stuff squirted in his eye and the specialist finally spoke. “No abrasion, no damage to actual eye” and I almost cried with relief.  Oliver couldn’t tell me if he had blurred vision or if it felt wrong so we had had to go to the hospital.  He gave us some cream as the cuts were near his eye and he didn’t want it getting infected.  6 hours after setting off for casualty we could finally go home.

That night in the bath, I noticed a couple of blister spots on his back.  Yep he had the pox too.  I offered him some medicine last night and he nodded and took it so must have been feeling rough.  He’s having a pyjama day today. Hopefully all spots will have scabbed by school on Monday.

Oliver has returned to his old favourite pastime of throwing things.  He is bigger and stronger now so can throw a lot further.  Gooey louie now has no snot left as it’s all been thrown to the ceiling as it sticks.  I made pizza for lunch today so they can pick at it throughout the afternoon as they haven’t had much appetite.  Oliver took his into the kitchen, I thought he was eating on the picnic mat he’d made me put down for them the other day. He came in with a half eaten piece, put it on the plate then took another piece.  He came back again with a half eaten piece so I went to see exactly what he’d been doing.  I saw a bit of cheese on the floor so I picked it up and asked “what’s this” he looked up and said “Stuck!”.  I followed his gaze and sure enough it was stuck.  Bits of pizza stuck all over my ceiling, and tomato sauce where the cheese bit had dropped off.  He is obviously doing some kind of gravity experiment or it must be really good fun to make things stick to the ceiling.  He helped while I was cleaning it up by pointing out the bits of sauce I’d missed.

An that was a week of our restful Easter holidays where I was hoping to recharge a little.  Max got the best deal, his respite people stepped in and took him for a few days as he was stressing about Emily in hospital and the whining of the poxed one gets right on his nerves, so at least someone got a break. Oh and we managed to get the appeal done and sent off too.

xx

 

Living in chaos.

The electrics in the kitchen were condemned and Wickes were having a 4 years interest free deal on kitchens, how could we resist?  The kitchen was falling apart when we moved in, I think there was only one door still hanging in the end, but with limited finances it got put on the list of things to do- in time.  Now with this deal and our new budget drawn up we could look at getting a kitchen, as the electrics would need doing it could all get ripped out rewired and fitted.  Hooray!

We had a man come round to plan it with us, extra tall cupboards, pull out corner cupboard things, a pull out spice rack drawer and the sink of my husbands dreams (not very exciting dreams admittedly).  In the old coal shed we could put the washer and drier and other sundry items thus leaving the kitchen as just a kitchen.  We booked it after tweaking it to fit in our budget and got an installation date.  Everything going well so far.  As it was a full refit, with electrics, everything had to pulled out and that’s where the chaos started.  The conservatory was packed with stuff we wouldn’t need til after the fitting, the living room contained 2 freezers, a fridge, a tumble dryer, kettle, toaster, crockery, cutlery- you get the picture.  Any other bits were put in bedrooms in boxes.  Kids couldn’t get their toys, we wouldn’t have a working oven for up to 8 working days, no sink for at least 3, no washer.  Fortunately my parents live not far away and would let us eat there and wash the clothes.  So I seem organised and have tried to explain to the kids what’s happening, showing pictures of the new kitchen and moving things while they watch.

Day one- the workmen turn up at 7 on the dot and rip out the kitchen, I say rip out, they probably give it a kick and it collapsed! “I don’t like these mens mummy” says Popples but we seem to cope with the change ok.  We go for tea, do a wash and when we come home the “mens” have gone which makes Popples happy.  Oliver struggles as there is no space for him to play, or lounge with his teddies after a hard day at school.  Then comes the next blow, the pipes have been waggled so a connection to the bath has come lose and started leaked.  The husband caps it off and I text mum asking if we can have baths there too.  He plans to fix it at weekend.  At this point we have one working tap, the bathroom sink.

Behaviours get worse as the week goes on, by all of us.  I’m running around dropping kids off, picking them up, going to the folks, bathing them, washing clothes, packing the clothes in the car to bring home to dry, wrestling three kids back in the car.  It’s chaos.  And for my 2 boys, it’s particularly hard as the routine is gone.  Oliver starts playing up at school.  I end up getting a phone call Thursday to come get him as he has stripped off and won’t get dressed.

The weekend comes and he gets all the plumbing supplies, spends 2 days working on the bathroom, moving the bath and sink as planned to give us more room.  I’d asked 3 times if we should just get a plumber- “no I can do it, it’s just some pipes” turns the water back on at 9pm Sunday night and theres now fountains in the bathroom.  My one tap, my one source of water has gone.  My husband is very upset at this point, clearly it’s more than “just pipes” when it comes to plumbing.  I knock on my neighbours door with 2 jugs begging for water, and I get more than water, I get a 20 minute gossip session too with some very juicy stuff.

The mens fit my sink the next day and I could have kissed him, he also emergency repairs the main pipe upstairs and caps off the rest so we have the water back on.  I get the number for a plumber but Leon knows a friend of a friend (I know, I can see whats coming too).  By this point I’m exhausted and stressed and can’t remember when I last slept and still have to do the school run, cope with three displaced kids and my dad feeding me mega portions as I’m “looking too thin and ill”.  The plumber comes, doesn’t fit the waste pipe properly into the outside waste pipe so when I empty the bath it comes down the newly plastered walls (it’s still drying out).  He also managed to take a tape measure, spirit level, screw driver, saw and other items that had been in the tool box.

I cry.  For hours.  My house is not my home, my kids are stressed, I’m stressed, bits are missing from the kitchen, and then someone says to me “it can’t get any worse, it’ll be great when it’s done” and then they listen to me rant for half an hour.  Leon manages to fix the drainage pipe so the bath works, the kitchen men plumb in my washer and cooker.

On Thursday (a week and a half after it started) I move the living room back into the kitchen, I clean non stop, and organise the toys and rug and teddies and I bring the little ones back from school to a home cooked meal.  Oliver’s face was a picture, wreathed in smiles, teddies on the floor, lying down and covering himself in stickle bricks.  Popples not so happy “I need to go to my nana’s”.

The kitchen is done, the bathroom no longer leaks, Oliver is now keeping his clothes on- at school at least, the odd pencil pot stills goes flying but he has calmed down in school, Max is trying to find his way around the kitchen but knows where the coke and crisps are so isn’t overly bothered about much else.  My husband has agreed in future not to attempt plumbing.  I knew it would be hard but this hard?  Although what eejit attempts a bathroom whilst kitchen is being done?

All settled?  Not a chance, with the severe weather Max’s ceiling has a major leak- think we will leave that to the insurance!

 

xx

 

“A thorough investigation”

I spoke about Max and losing his placement in “How can people be so mean” and this is the update.  We were invited to a meeting to be given the results of the investigation into the allegations made about staff behaviour.  They claim there was a thorough investigation and there is no case to answer.  “We can’t go into specifics about people but we found it was a disgruntled employee who we have let go and basically a case of revenge/sour grapes.  Max is welcome to come back”

Their timeline of events was different to mine, when I pointed this out they said I had it wrong.  I asked if the main mean person had been let go.  No he hadn’t.  There was no evidence against him except he said/she said and if we sent Max back then he would have no contact with this man.  I asked about the screen shots I received with his mobile number on it and asked if they’d called the number.  “That isn’t evidence, anyone can doctor a screenshot”, well I can’t.  Also if the man was innocent why would Max have to be kept away?  I asked why nothing had been done when his 1-to-1 first mentioned something to the manager and got “it was only after we let her go that concerns were raised”.  We argued the time line, but it was no use, they wouldn’t budge.

We told of how his activity programme had changed and asked why.  We told of his change of behaviour.  “We have new management” so the old manager who was really good with the clients and keeping staff in line was now being blamed because of his lack of office skills, the new managers had to sort all that out and it “may” have affected services.  I told them that the new manager was the same woman who had been with us from the start, so she knew us and it made no sense to change his activity. “Well I’ve known her a long time, she has been trying to deal with a lot as she hasn’t been a manager before”- yes and? She gets a promotion and decides my sons tailored programme is no good without discussing it with me? The programme she helped tailor!

All staff members have been interviewed and been given a leaflet on respect and dignity.  All clients have been interviewed and no one else has a problem.  What about the people like Max with no voice?  The parent was interviewed to see if anything had been “said” at home.  I asked how they were supposed to say anything when they couldn’t talk, what method was used? A sad/happy board? “we can’t go into details”.

I saw a change in behaviour in Max and thankfully his 1-to-1 told me what was going on, so I could intervene.  My gut tells me something went on, you get a feeling about people, and it’s not scientific and sometimes it’s wrong, but not often I don’t think.  For her whistleblowing she has lost her job, been badmouthed all over and when I spoke to her last she had had a social worker visit her as they had received “an anonymous phone call” about her and her kids.  She is seeking legal advice.

I just wonder when I am going to hear about another incident at this place, or will they be more subtle in future.  One thing is for sure, they had their own agenda and have fulfilled it.  No case to answer.  They’ve skewed things so she has no credibility, and I look like an overprotective drama queen mother.  They’ve lost over £18,000 in fees plus other monies they could claim as he is classed as severely disabled.  The man managing the meeting said Max would be welcomed back with open arms, he brings a lot of money with him.

To me, and I know I’m not impartial, it feels like a whitewash.  Max wasn’t happy.  I’ll never know exactly what went on, I only have screen shots of conversations and my gut to go on, but I know something went on.  He won’t be going back.  My social worker is trying to find something else for him, we will see how that goes.  In the meantime, we have time to get him back to his happy self and rebuild his self esteem.

 

xx

 

Poo!

Time to talk about poo.  We’ve had a few incidents recently from Olly, I had a lot from Max but he was younger so I thought Oliver may have bypassed this phase.

When Max was younger he used to smear at bedtime.  He would play in his poo- decorating the walls and floor.  Obviously I can’t watch them 24 hours a day, and I was told that we needed to get into a bedtime routine in the hopes that he would understand and sleep.  He didn’t.  He used to sleep 2 hours a night.  I would put him in babygrows as he couldn’t undo poppers.  When that didn’t work I put him in pyjamas with a vest over the top that fastened with poppers (press studs) the I tried buttons and zips.  He still found a way to get into his poo and paint which resulted in me stripping his room and leaving him with painted walls and tiles on the floor which were moppable.  Mattress cover, etc to make clean up easier.  I would go up and down the stairs to check every ten minutes.  With his language being limited after a few tries with various words we ended up with “dirty, don’t touch” and so now at 23 he still won’t wipe his bum and if you try to force the issue he says “dirty, don’t touch”.  We are working on this.

Oliver – well he has been fascinated by his bodily functions a while but his last episode was a while ago and that was doing a wee in various receptacles and emptying it in the toilet.  The only poo incident we had was where he slammed his door and couldn’t open it so by the time I had gone up to check on him he had used the volcano out of the dinosaur set as his toilet.  Genius!

Oliver has stopped sleeping in his room again- Christmas changes threw him so he has been camping at the top of the stairs.  The toilet is 3 paces away from where he lies and plays.  One evening his dad went to the bottom of the stairs to look and make sure he wasn’t paddling in the toilet (oh yes that’s fun) he said he could smell poo.  He goes up and I grab clothes and cleaner.  Upstairs he had re-enacted the episode where Bing stands in dog poo, only he had substituted his poo for dog poo and all of Bing’s friends had jumped in it too.  He tried to wipe his bum 2 nights later, couldn’t so wiped his hands on the wall of the landing.  Last night there was a poo at the top of the stairs.  He hadn’t even attempted the toilet.  When I asked what it was, Oliver shouted “Poo!” in a gleeful tone.  I said “where does poo go?” and he pointed to the toilet.  So it’s not like he doesn’t know.  I’ve been told it’s quite common for this to happen, although no one agrees why.  We keep it low key, reinforce the toilet, and just clean it up with no recrimination. We don’t want to make it something he gets lots of attention for.  I carried his pyjamas down to the washing machine last night, carefully I thought, but not carefully enough!

I know kids find poo funny- my 3 year old thinks poo head is the best insult ever!  I don’t find it quite so funny when I’m scrubbing the carpet.  Although thinking about the Bing thing he did- well it does raise a smile.

 

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