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

 

Discharged from paediatric services.

  • We had an appointment at the hospital on Tuesday.  Now this post may be a bit random at times because I’m still trying to process it.  The consultant has discharged Oliver from the paediatric hospital service aged 5.  There’s nothing they can do for him.

Now on one hand it’s nice to have some honesty but on the other hand it’s 20 years since Max was diagnosed and there’s still nothing they can do?  I know the NHS is at breaking point, so I understand them wanting to lighten their books and get rid of cases where they can’t do anything. But it feels like we have just been basically told to get on with it.  The doctor said “yes his behaviour might be unmanageable now but it may calm down as he grows up.  We have no sleep clinic here it’s miles away and I don’t know how you go about referrals” which made me ask who does know?  Apparently family support groups can help but they are full round here and aren’t really able to help anyone else at the moment.  Social workers are overworked and we aren’t an at risk family so no chance of getting one of them.  School nurse should know more.  If anymore non-autistic behaviours arise see GP for a referral.  The problem is as I learned through Max, is that all behaviours are put down to autism once they have a diagnosis.

I feel quite alone now and that it’s down to me doing the speech therapy work- we have a great ST, he sees her once a month and she has given me her phone numbers so I can check I’m on the right track.  School aren’t doing his IEP’s, he actually got sent home with homework last Friday and asking around it was the same as everyone else’s- Finding Nouns.  So you can guess how well that went down.  I know he’s my child and my responsibility, but surely school should be doing their part as they agreed to take him and the extra funding he came with.

I wonder if deep down I was expecting more from the professionals, if I was expecting science had moved on in 20 years.  I suppose it has in a way because the doctor made sure to point out to me that it was probably something from my genes that made him this way.  It’s always nice to hear that.  We have our first appointment at genetic counselling next month so we’ll see what they say.  I think overall I feel abandoned.  It’s down to me and the ST to reach him and make him fulfil his potential- whatever that may be.  I am not trying to make him conform, like school is, I’m trying to find a way into his world and share mine and maybe meet somewhere in the middle.  I’m trying to find a way to ease his frustration and make him happy.  I’m trying to stop the violence and tantrums and tears.  I’m trying to get people to realise he’s just as important as everyone else and has a voice and rights.  I’m trying to make him know he’s loved, no matter what he does.  I’m not worried he will fail- he can’t, I’m worried I’ll fail him.

He’s different- not less.

 

xx

Summer Holidays- week 5 of 6

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Yes we have made it week 5 relatively unscathed.  Uniforms all bought and nearly all labelled just need a pump bag for Popples and I’m done.

To be honest I was dreading the big summer break, 3 kids at home apart from her three sessions at nursery and at first it did not look like it would go well.  The boys are usually out at school or placement so Miss P usually has me to herself during the day.  “You’re my mummy!” has been heard regularly for the first two weeks and I’ve had to explain that I’m everyone’s mummy even Emily’s even though she doesn’t live with us anymore.  For a just turned 3 year old this concept has been hard to grasp but we have persevered and there’s no more griping, as everyone gets mummy time and everyone gets daddy time as well as all time together.  The sharing of toys has also been tricky with many arguments turning into fisticuffs.  For a tiny person, Popples can certainly hold her own.  “That’s not nice.  Let’s share. No fighting. There’s enough for everyone”- honestly got sick of the sound of my own voice!  When it comes to sharing food, no one has a problem everything is distributed fairly with no complaining or hogging.

I also decided this summer to give everyone a break from hard learning.  The speech therapist, Vicki, has discussed with me how Oliver takes time to process things and should be given time when the pressure is off to just kind of make sense of things. So we went back to mainly play based learning, taking turns, colours, numbers letters- etc. Still learning but not at a desk with a pencil and work sheets.  I can not believe the progress they have made.  My non verbal Oliver has not shut up!  We bought Sing! for them and Secret life of pets a while ago and these have been great for both of them.  Oliver made a stage and microphone out of stickle bricks and was singing proper words to proper songs  When he wants to watch it he comes up to me and says “shake it off  shake it off” which is what the pigs sing “piggy power”.  His negatives have improved but Vicki said that’s usual as he is more motivated to declare his objection to something “no more bed time” “no more car” “leave me alone”  but he has also started verbally requesting things “more juice. Want crisps. breakfast now” and telling me just things “bumped head. it’s raining”.  Now for a child who had 20 words at best before the summer, well I’m impressed.  But what made me really proud was yesterday and him voluntarily sharing.  They have a set of secret life of pets figures each, just little ones that were about 2 quid a set from ebay and they love them.  Usually they still fight over them but Oliver split them into two piles and then came over to Popples and said “Peppy’s” (he has always called her Peppy) and then when he found another 2 Gidgets in his set he brought her one.  Obviously I then text and told everyone I knew what he’d done- I was so proud!

I think the turning point in their relationship was when it was raining hard the other week. The weather is not great in the summer holidays- it’s like the universe wants to see who’ll go crazy first.  They’d had enough of staying in so I ran them a bath and opened the back door. There was a huge muddy puddle in the border I hadn’t finished planting in and they both dived in running up and down, screaming and laughing, in the pouring rain, getting wet through and muddy head to toe. I’d done the bath so when they came in they were warmed straight away and into warm clothes- last thing we need is poorly!  Now Oliver joins in when we play chasing, obstacle course, racing, and everything.  He was the monster yesterday so put his Gruffalo gloves on (they are like claws) and chased “Peppy” round the garden shouting “Raaaaaahhh!” and attempting to tickle when he caught her.

We have a week and a bit to go before Oliver goes back to school and I’m worried he may lose his speech?  It’s busy at school and he doesn’t have much confidence in his voice yet- he’s only just found it.  But I’m going to put that aside and enjoy what I have right now.  I’ve heard her helping him with his words and I’ve seen him helping her with her confidence in climbing.  Maybe it’s the start of a beautiful relationship, best friends.

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xx

Shoe shopping, dentist and haircut.

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These three things fill me with dread.  We had to go shoe shopping this morning for new school shoes as term starts in 2 weeks.  I called in the eldest, Emily, as helper today much to her delight!  I can’t do it alone, it’s physically impossible.  It started well with Oliver in his major buggy watching Popples get measured and choosing shoes.  She tried on every pair in her size and eventually settled on the ones with “little diamond sparkles”.  So far so good- and the added plus that they were in the sale.

How soon the smiling turned to screams of “no more shoes! No! No! ”  and kicking and using his old shoes to try to smack the lady measuring his feet.  We got a rough size and she brought out a selection.  We chose the no-scuff-toes ones and I had him held close talking calmly to him while they tried to fit them.  It didn’t make much difference, by this time he was sobbing, “no shoes, mummy no shoes”  and everyone is feeling like crap.  She checked them, he tried to do a runner, they fit, she asked did we want to try anymore on. (Ray Liotta face) We went and paid (fifty quid for boys school shoes!) but I couldn’t put him through anymore so we paid and left, but I also told the manager that the girl had done a sterling job considering what Oliver had been like.  I don’t know why shoe shopping is so traumatic, Max used to be the same when he was younger.  I wonder if it’s the invasion of personal space, or the feel of new shoes or just because it’s new shoes.

Haircuts are another traumatic time.  We have a fabulous hairdresser called Helen and she used to do Max’s hair so is used to dealing with customers that wiggle.  We have had a couple of dodgy cuts where she just couldn’t finish due to distress by all involved which meant me nipping in at night time and snipping long bits off.  We have had cuts where she’s been lay on the floor next to him snipping bits off.  She gave me her internet password so I could put you tube on my mobile for him to watch (until he managed to grab it and throw it) and last time we took a dvd portable player with Sing! for him to watch.  Last weeks cut was probably the best yet.  One major wobble, one grabbing scissors, and only had to finish the back on the floor.  I am trying to take him regularly so he gets used to it.  He will now let me chase him with a hairdryer and brush his hair so it’s progress.

The dentist- well she checks his teeth whilst he is on my knee screaming his head off.  That’s after I’ve carried a screaming, writhing child up the stairs to the dentists room.

Some things that cause stress can be avoided or be built up to but these three things can’t be avoided.   He needs shoes, he needs his teeth checked, he needs haircuts.  I am hoping that as he becomes more familiar with the situations things will get calmer and easier.  We talk about things, we role play, we read books and I try to present a calm front.  I don’t know why he feels so strongly about these things, I can guess, but I will always try to make them as painless as possible- even if that means buying the most expensive shoes in the shop!

xx

 

Dealing with “nice”

Now this is a real problem for me.  I never know what to do.  You see after 20 years of dealing with autism it’s not often that I’ve had this experience.  I don’t know when it became acceptable to comment on a person to their face knowing nothing about them.  I have to say I am not too nice when dealing with these people, a part of me knows I should try to educate but when you see me with Max especially, any one can see he is different, so the comments don’t seem like questions just an excuse for someone to try to get one up on us.  “that child needs a good hiding!” and my response “oh have you called the Lancet- I’m sure they’d be thrilled to hear your cure for autism”, “there was no such thing as autism in my day”-“was there always ignorance?”.  I’m not especially proud of my replies but I’m sure I’m not the only autism parent who has to deal with this inane nonsense.  I was shopping with Oliver the other day and we were discussing sausages- I say discussing it was me asking if he wanted blue sausages (chipolata’s) or purple sausages (Cumberland).  It was also 6 am and we’d been up since 3am so I wasn’t in the best of moods anyway but some woman overhearing us says to me “why you giving him a choice? he should eat what he’s given” I just replied we didn’t live in a dictatorship and left it at that. But what makes anyone think that comments are appreciated?  When I was little I was taught “if you have nothing nice to say, say nothing at all.”

This has gone on for years, staring I can cope with, it’s not often you see a 40 odd year old woman dragging a 5 year old round a supermarket by his walking reins while he is on his tummy on the floor making swimming motions with his limbs and I’d probably look at that too.  So I can manage staring and I can manage comments (although admittedly not always nicely).  When people are nice it really throws me off.

It was Oliver’s sports day early July, on the big playground with parents invited so the main gate would be open and with him being a flight risk I was panicking in case he got away from his 1-to-1 so I positioned myself ready for the intercept if he went for it.  He cam out with his classmates, sat with Mrs D- his 1-to-1, and waited.  He was winning the obstacle race- until he stopped to wait for everyone to catch up, he cheated at the egg and spoon but won, then came the space hopper race.  He was more enthusiastic than skilled and was well behind, so I was cheering him on and I stopped to draw breath and I heard a group of other mums shouting his name and encouraging him  He eventually finished to great cheers from parents and school friends alike and the look on his face was pure happiness. I wiped away a tear (hayfever-honest) and when it was all over I went to collect him.  So many parents came up and said how well he’d done, how they/d seen his progress over the year and often a story of their child and mine doing something together.  Yes I was in tears on the way home.  These people don’t know how their simple “didn’t he do well” comments affected me, and made me feel supported.

I was in the quick check out queue once in the supermarket when Max was little and the woman in front kept looking at me then him- I got ready to defend us when she spoke I was deflated “would you like to go before me? My grandson gets bored waiting in queues and my daughter has the same look you have.  I don’t want to pry but is it autism?” We didn’t go in front but we had a chat while we helped each other pack up.

When Oliver was a baby I took him and Max to Morrison’s for a few bits.  We’d been doing well on our walks and shopping trips when suddenly Max went into Meltdown mode.  A staff member from the bakery came over and I thought “uh oh we’re going to be asked to leave” but she crouched in front on the pram and kept Oliver entertained while I dealt with Max.  I couldn’t thank her enough.

So I’m not good in dealing with nice, it turns me to jelly and often makes me cry.  I have also developed a face that I call my ray liotta “goodfellas” face

ray

“He’ll eat it if he’s hungry enough”

“just put him to bed he’ll get the message”

“take some time for yourself”

“He’s just spoilt”

I’m sure you get the picture.  I sent it to my daughter when she text me saying “did you get any sleep last night?” the reply I got “lol. ok do you need some help?”  I think the picture just sums up my reaction to insane statements and questions.  I also think it might be more polite than making pithy comebacks.

I just wish people would think- how would I feel if a stranger commented on my life? before opening their mouths.

 

xx

Max

Max is my eldest son, second oldest overall.  Him and his sister Emily have a different dad to the younger two.  The dad wasn’t really interested in us until he had a heart scare a couple years ago then he started to take an interest- that’s led to problems between Em and her dad but they are both grown up they can sort it out between them.

Recently Max has been having a really hard time, his sound sensitivity has got worse and although we have him in a lovely placement now I suppose it’s hard for him to forget his college and last couple of years at school.  He now works in a park that has a café and a “learning room” where he can (allegedly) learn to use a washing machine, learn to wash up, sweep and other household skills.  He didn’t really take to that as he is a lazy little sod at times but as he loves being outdoors he does ground work- weeding and such like, cleans in the café, shops for stuff, gets to drink mugs of tea and has done sanding and paint stripping.  He goes 4 days a week, five hours a day and has a 1-to-1 to support him.  It was going well but I didn’t think about the summer holidays where there would be more children using the facilities, he doesn’t like squeaky children.  A couple of week ago I had to go collect him at lunch as he had hit his head so hard during a meltdown he had made himself bleed.  I picked him up and brought him home, made him a cup of tea and got a jigsaw out. He can’t talk except to make the odd request and every method of communication I’ve tried with him has failed as school and college never listened and never used it so there was no consistency.  Starting from scratch now using PECS and Makaton but it will be a slow process.  I called “work” and told him he was having a week off.  The doctor had previously prescribed some anti anxiety meds (I hate giving out meds ) so I started him on a small dose of it, and ordered him some ear defenders.

He seems much calmer now and he has more control having the ear defenders and I have noticed he sits with the family a bit more- even when Popples is around (she is very squeaky).  Anyway I’m writing this because I was talking to my husband about him the other day and I said that Max is one of the bravest people I know.  He has no language and very limited ways of communicating but he will get up each morning and try to make the best of the day, even though the world is busy, which scares him; it’s noisy, which scares him and I can’t even imagine what it’s like to be in a world that makes no sense with no way of making yourself understood – I’m supposedly neuro typical and I find it difficult to navigate the world so how hard is it for him?  He never refuses to try something (except food) and even though it’s hard for him to be around youngsters I remember all the times when Oliver or Popples have been babies or asleep on the sofa poorly and he has sat with them and protected them when I left the room.  I would love to be in his for a few hours so I could know how best to help him, so I could see the boy I used to know, who was a joker and a daredevil and had a wicked sense of humour- mainly slapstick but still.

He gave me away at my wedding.  I know mum expected me to ask my dad but who else except my gorgeous 22 year old son could have done it?  It wasn’t a traditional walk down the aisle- we lurched and stopped for a flap half way down but who cares?  He looked so smart in his 3 piece suit, all eyes on him but I had hold of him and he did so well.  He smiled for some pictures, scowled in others, and I asked the photographer for every picture, I didn’t want them choosing what represented my family.  People said to me that day “You must be so proud of him”  and I replied “I’m always proud of him” because it’s true.  Having a child with autism is hard going, but along with all the cack stuff I have been taught patience, acceptance, unconditional love and that sometimes you may have to dig a lot deeper to find a person but when you take the time and effort to do the digging you find such a beautiful soul that it makes it all so worthwhile.

xx

Stay at home mum

That is my title  I am a stay at home mum.  People try to dress it up like “homemaker” or whatever but I’m a mum.  My husband works full time and we make do with his wage and the pittance I bring in for being a carer.  We’ve looked at the numbers and to be able to pay for childcare and care for Max while I worked – well I couldn’t get a job that pays enough.  It costs us over £80 a week for 15 hours of nursery care for Popples, mainly to socialise her.  Having 2 non verbal brothers we thought it was important to have time to play with her peers and not just be reliant on mummy for company.  She still lacks confidence a little but she has fun with her friends and is ready for Nursery School (FS1) in September.  She is going full time, and a couple of children from her nursery are going too so she’ll have familiar faces.

Anyway, I am getting off topic.  Being a stay at home mum is often thought of as being a soft option, I don’t have the pressures of commutes, deadlines etc etc but on the other side of that I don’t get holidays, time off sick or paid!  My day starts when one of the adorable children I have wakes.  Currently that is Oliver……at 3.30 am……. every morning!  The research suggests that 80% of children with autism have “sleeping difficulties” and how I hoped we were in the 20% this time that didn’t. We aren’t.  So he gets up and has to be wrestled back to bed, often holding me in a death grip in case I think about leaving to get some sleep in my own bed.  Then Popples wakes around half six and immediately starts jabbering on about what we’re going to do today or to ask if I “had a good sleep mummy?” or to talk about yesterday or last week or……you get the picture. Breakfast then getting the little ones dressed.  Oliver is allergic to clothes at the moment which is fun on a school morning where you have to try to get him dressed whilst he is trying to get undressed at the same time and get him into the car (whilst he is writhing in my arms ) and remember book bags etc.  After various drop offs I get a chance for a quick coffee and tidy up before pick up from nursery.  Then its a couple of hours working with Popples until Olivers pick up and Max gets dropped off.  Then, on a good day I get to make 2 lots of dinner, Max is extremely fussy, Oliver is mainly into Italian and Popples will eat almost anything so she’ll either eat what one of the boys is having or what me and daddy are having.  In between all this there’s washing up, washing, drying, folding, appointments, making/changing beds, decorating our ramshackle house, walking the dog, speech therapy programmes, education programmes to follow and general playing with the kids.  After dinner it’s supposed to be free play where I get ten minutes to look at the accounts or sort out the schedule for the next week but I inevitably get dragged into dolls house (everyone just poos and sleeps) or doctors (I’m the patient who is too hot and needs a blue plaster?!) or saving the olive tree which Oliver has never seemed to like and attacks at every opportunity.  If daddy is home on time he helps with the baths- his commute is awful so often I take this on and he joins us if he’s home on time.  Apparently the best game to play in the bath is shouting “Hoppity Voosh” as loud as you can whilst throwing water everywhere.  If all jug type implements are removed then hands work just as well splashing fiercely. Bed time reading then the “I need a wee” “can we do this tomorrow”  “I can’t find my cat/duck/witch” and Popples is asleep.  Oliver as has been stated is not sleeping so he stays up a bit longer while one of us does dinner and the other tidies up- do you know how far stickle bricks can get?

Max is in bed by 10, lights off at 11.  Oliver is having a hard time so it can be anything up til midnight before he sleeps, and cannot be left unattended at the moment due to his exuberant death defying activities.  So I don’t get much time with my husband at the moment, or time to do much at all.  Don’t get me wrong Leon takes on a lot after a full day at work helping out where he can but I don’t like him doing the nightshift then having to work all day and travel in commuter traffic on the motorway so I try to do as much as I can because my job is to look after them while he earns money to look after us so I can look after them.  At the moment it feels like we never see each other, we are both working flat out trying to do the best we can for our family and we are losing ourselves and each other.  It’s a few weeks away yet but I’ve arranged my mum and eldest to look after the other 3 while I take him away for our first wedding anniversary.  Just to have 2 nights together, a meal we can talk to each other through and just have some peace and together time.  I know it’s not a long term solution but it’s something.

I’m not moaning really, I know I am lucky to get to raise my kids and be there for them all the time.  I’m just saying it’s not easy.  I got to sleep in til half past nine this morning!  That’s how I know Leon still loves me “you look like crap, I’ll get up with them tomorrow” were his actual words but I know he loves me really. I think what prompted me to write this was a few things people have said to me.  They seem to think I sit at home watching day time tv and eating bon bons.  “some of us work and have children too” yes and I admire that but some of us also get time off or get to watch a film once the kids are asleep or get to share a meal with their family.  And no, my kids are not spoilt brats.  You can’t discipline the autism out of a person.  I discipline my kids of course I do, they have boundaries but there are somethings you just have to roll with because nothing you can do, at this moment in time, will change anything.  Things will change, but at this moment this is our family. And we’ll cope because we have to.  Everyone’s family works differently, some a little more differently than others.

Getting a bit rambly now due to lack of sleep, and I know theres a chocolate cake with my name on it downstairs- it’s a “hooray we survived the first week of the holidays” cake.

xx