Family at breaking point.

Oliver is 6. He was diagnosed with autism 4 years ago. I struggled at first to accept it- how and why did it happen again, but that couldn’t last because he needed me ready to help him and fight for him and just love him. And I do. Max was diagnosed 20 years ago so maybe it helped that I knew what I was doing this time around. My family is now in the verge of breaking up because after four years, Oliver’s dad will not accept the autism or change his approach.

He’s not a bad man. Olly was his first child and he had such expectations that he thinks now will not come to pass. He doesn’t understand how Oliver sees the world, how he learns, when he’s just being a swine, the difference between meltdown and tantrum etc. Things I’ve had to learn so that I can help him achieve everything he wants to. I’ve modelled the discipline model, I’ve shown the speech therapy techniques, I’ve shown him how to play with children, I’ve talked to him, I’ve offered him counselling and helpline numbers and I don’t know what else I can do. Treating him like his sister will not make him like his sister, but he doesn’t get this.

The last couple of months have been so bad, I feel like I’m alone raising this family. If something happens it’s me having to referee and sort out the fall out. There’s constant arguments with him saying “I’m entitled to be angry” and me saying “you have to see through his eyes. Anger is no good anymore, it’s driving us all away”. Shouting at kids doesn’t work in this house. Loud, sudden noises make a situation escalate so fast. I’ve been saying the same things for 4 years and he’s just not listening.

Oliver shut down last week. I’d never seen it and I do not want to see it again. The playmobil pool was filled with water and Olly went to tip it. Olly and water is always a risky combination. Dad shouted “No” so Olly went to do it again. “I Said NO!” And then the pool got tipped. “NO MEANS NO!” So Olly ran into the living room and I followed as if he gets told off he will throw something or tip something. He was shaking. I tried to talk to him but he lay on the sofa covered his ears and closed his eyes. He shut out everything. I stroked his back and murmured to him. He lay there for a good while and I just let him calm himself until he was ready to let me in. Eventually he sat up and dad came in to see him but he just clung to me. And that was the point I told him to get help or go.

It may seem harsh but it’s been four years. He’s missing out on important things while being angry. I understand the frustration of dealing with our boys at times, the behaviour and lack of sleep is not a good combination. I understand any kid winding up their parents at times, hell, no one is perfect. I’m nowhere near perfect but I try every day to do the best I can, to learn, adapt, make learning fun, picking which battles are worth the fight. He refuses to adapt. I asked him if he thinks acceptance means giving up and he said yes. I disagreed. I think acceptance means you can open up to more ideas, different worlds, different rules. We aren’t like other families so why should we try to fit in with their “normal”? Why can’t we make our own normal? Why can’t we embrace our differences? We can think outside the box of norms to make life fun. If we keep trying to force our kids into a blue print they can’t fit what kind of parent does that make us?

If anyone has any constructive ideas on how he can move on it would be helpful. Coming from me the words are falling on deaf ears. We can’t carry on living in this angry fug. It’s not good for anyone especially the kids. If you do care to leave a comment please know that bashing him won’t help the situation. I can’t help him. He just throws that I’ve had 20 years to deal with this and he’s only had four. When max was diagnosed I was a single parent with no family back up so I didn’t have the luxury of wallowing. The boys don’t need fixing, they’re not broken. I don’t know how to change this mindset. We have to get through Christmas and then I suppose we will sort out the future. Over the last four years we’ve had the chats, discussions and arguments but nothing really changes. I’ve asked him how I can help, what he needs, how I can make it better, tried to support and be understanding but with no movement I can’t continue to do this. I’m not helping at all and I’m so tired of going over and over the same ground. I’m done. 😞

Xx

Butlins Skegness

We decided to have a holiday with the little ones and everyone said Butlins was worth a try as they had got so much out of it. So we booked and paid monthly for a gold apartment and the dining plan. We also paid an extra £15 for a ground floor apartment. Who needs the hassle of stopping another child trying to jump from a balcony (Max tried it in Florida)

I can see the appeal of Butlins. There’s a beach, small fairground, soft play and parks, food, shows and a water park all on site. However, once you get into the centre it’s very busy, there’s pound rides everywhere, lights, noise and an amusement arcade in the main pavilion. Not exactly brilliant for Oliver-total overload. He ran. A lot. We took turns chasing him whilst the other looked after Popples. Meal times were not a family affair. Day two I drove to the supermarket to get food in for breakfast and for Oliver and some Peroni for me and the hubs. I sent him for breakfasts with Popples because it was paid for, he eats more and I’m not too bothered about breakfast. It saved the morning stress of trying to keep Olly occupied whilst we tried to eat.

The activities we did were fun. The beach was a big hit, he was straight into the sea laughing and splashing up to his armpits. I built castles with Popples as she is more wary of water although I did get her in for a paddle. The fairground has a section for under 150cm so they could go on rides by themselves which they loved and it was included in the holiday price.

The water park had a selection of pools and water slides. We went on one of them and the kids actually queued no problem for it. Soft play killed a couple hours. The climbing frames killed another hour. We didn’t get to any shows. We ate in shifts. We hardly slept, a new place with all those things to do hyped them both up. I slept in “the girls room” as it was named by the youngest. Hubs and Olly slept in the double bed. At least we didn’t have to listen to the snoring!

Because Oliver didn’t eat much for two days we decided to go to the Italian on site. Not nice and cost a chunk. The main meals on the dining plan were passable, just, puddings were lovely though. We had taken stickle bricks and dvds for them which settled him a little in our apartment. Bed time was another challenge. She wandered in and out needing the toilet (fifty times an hour 🙄), he tried climbing out of the bedroom window. He wouldn’t go in the shower, couldn’t have bathroom light on as it was an extractor fan and the noise bothered him. Thankfully he couldn’t reach the security chain on the door or that would have been someone on duty all night.

It’s nothing we didn’t expect although I did think they’d be tired from the days exertions and sleep a bit more. We didn’t really see much of each other. We didn’t get any relaxing time. Before we went we talked about it and accepted that it was the kids holiday and to not expect too much and I think it helped keep our stress levels down. Instead of losing it at dinner I took him out for a walk while dad and sister finished tea. The next day he did the same for me.

The kids loved it. We made it about them telling Popples she could do what she wanted, giving her options and telling her that if she didn’t like it she didn’t have to do it. She cried when we went swimming but we had made the plan where if she didn’t like it I’d take her to do something else and we’d meet up later (very scared of big water) and told her that it was up to her to tell me if she didn’t like it. No worries once she got in and saw it only came up to her knees in the baby pool. She went on the big slide with us too. Her confidence grew because she was in charge wherever we could let her.

Butlins has more on offer but not for us. Climbing walls and stuff were not appropriate for us. Golf wasn’t either. So I can see why people love it and go back time and again but I think it’ll be a while if we go back. If we do at all. The request for next year is Peppa Pig World. She was only a baby when we took Oliver so we are considering it.

I think expecting so little and having strategies in place helped us get in the right mind set. We made some amazing memories. I took her on her first grown up fairground ride and got to see her face filled with joy and hear her laughter. I got to see my son laughing and splashing his dad in a very cold sea. I got to eat as many puddings as I wanted. I got to see my children squeeze everything they could out of family time. They loved it. And because they loved it, it was worth the no sleep, no relaxation, running around keeping him safe and every penny we spent.

Because she didn’t get to see a show we are taking her to the theatre tomorrow.

Butlins by the sea – ticks a lot of boxes but for a family like ours doesn’t tick quite enough…… yet.

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

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

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

Poison- or as I call it, liquid paracetamol

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Max is at respite this weekend- he’s gone to the caravan with his lovely other family. As a treat I thought I would book tickets for the zoo for Saturday for the little ones as an end of summer treat.  I should know better than to book anything.  It’s Popples last week at nursery before she starts nursery school in 2 weeks, Oliver is back on Monday- big year 1!  So on Tuesday I get a phone call from nursery saying Popples isn’t well, running a fever and crying.  She’s not a crier.  And she was ok when I dropped her off.  So I went to pick her up and sure enough she is hot as hell.  Great, last week in nursery and she’s going to miss it.  She has recovered well, don’t know what it was, Calpol a cool and soothe on her head, wrapped up on the sofa, lots of sleep and she’s back to her normal self so she can go in and say goodbye (with cake) on Friday.  Huzzah!  I hear you cry.  But wait, not to be outdone by his sister, Olly comes down with the same thing the next day.  Higher temp, floppy, and not wanting anything- I made the mistake of offering him a drink, and got a tearful wobbler for my trouble.

He let me, after a few minutes of persuasion and showing how I do Popples ears, finally take his temperature  and at just over 39 degrees I knew it was time to poison him.  Well if you saw his reaction, the screaming, thrashing, scratching in self defense you would be forgiven for thinking I was trying to kill him, but it is actually strawberry flavoured liquid paracetamol especially designed for children.  Brings down temperatures, and soothes aches and pains.  It comes with an oral syringe for ease.  Yep so easy.  No mess, just squirt (or dribble) into the mouth and most kids swallow it no problem.  Oliver on the other hand, does not care for the syringe, or teaspoon or juice with it hidden in.  Once you have him in position, legs and arms restricted you can actually get the syringe into his mouth.  Now over the years he has developed various techniques for getting it back out and I thought I had got all angles covered.  Yesterday I checked his mouth and could see nothing so thought it had been swallowed.  Silly me.  Of course he hadn’t, he’d somehow stored it in his throat and when I released him it got sprayed (literally) everywhere.  I’d seen him swallow so don’t know how he’d done it.  It is also the stickiest substance known to man, which is really great when me, him the sofa has been sprayed with the stuff.  Anyway after much sweating, and soothing words and restricted limbs, I managed to get some into him, and his temp did come down.  I also had to ask his dad to pick up another bottle on his way home from work- we buy generic now at half the price.

So he has his favourite dvd’s in a pile and  is sat under the “poorly blanket”.  It’s almost time for the next dose, and I hate it.  I hate that I can’t explain it will make him feel better, I hate that he won’t look at me afterwards, I hate that he runs away shouting “no mummy”.  I hope that he will one day understand, Max took years to understand “much better” but now he does I can dress wounds, give him meds and apply creams to his eczema.  I’m hoping he is well enough for the zoo and well enough for his new term.  His immune system is not as robust as his sisters and the lack of sleep doesn’t help either.  I don’t know if offering a smoothie after his poison is just asking for trouble.  Ah well I like to live dangerously!!  Medicine time- I just hope the neighbours don’t call social services 😉

 

xx