Is dual placement the way forward?

I didn’t even know it was an option until after last weeks meeting.

The meeting went as expected. I raised my concerns about the plans not being followed and then asked bluntly what they actually thought he was achieving and would he be able to achieve more in a more specialised environment. There was then the silence and mumbling until I asked “Do you see his future at mainstream”. Then the babble started “our job is to make sure….” blah blah blah. “I’m not interested in your goals. I’m interested if my son is getting the education he deserves”. Now I know I sound a bit of a pompous arse but I’m so tired of their goals, their boxes that need ticking and not my sons education and socialisation. He needs help to be whatever he wants to be. He can’t do rote learning in a classroom. He’s not being difficult. He can’t do it.

After the officials left I spoke to our senco. She said she’d check up on the plans in place, find a sign course and then mentioned dual placement. She is great. She ‘gets’ Sen kids but seems to have to drag the older teachers along with her. She wants the best for him too and is trying hard to provide it. She wondered if we’d considered dual placement and when we looked blankly at her decided we hadn’t. It would mean him going part time to school with his friends and teachers he knows and part time somewhere else, in a specialist school or unit. The benefit being we don’t take him away from all he knows in one go and also we can see which provision is going to suit him better. We don’t put all our eggs in one basket. This will be difficult to achieve with council cutbacks but I also know that if you cause enough fuss, and start annoying your councillors and mp regularly, you can get things done.

We have another meeting in a few weeks but I think this will be brought up by us and see how the land lies. If he does need to leave mainstream then at least he will have had time to make new relationships, it won’t be throwing him in at the deep end. We shall see what happens next.

Xx

Fighting the same fight:-it’s like Groundhog Day

I’ve not written anything in an age because I have been exhausted from having to explain again that just because my son is in mainstream school he is not mainstream.

I have had many meetings with school, I have offered to help with basic makaton, I have demonstrated to the teachers how I deal with Olly’s distress before he reaches crisis and I still get phone calls telling me what he’s done now. I see the caller id and my heart sinks.

3 weeks ago I got a call to say he’d had a meltdown and members of staff had been struck. I went into school and arranged four afternoons to come in and show how I work. We put a de-escalation plan in place for all staff members to follow and we’d follow it at home. Three afternoons went ok, I made notes on where it’s falling down and the fourth afternoon he started cycling up. I tried to follow the plan but his play doh and sand were not available and neither was his emotion fan. He uses the play doh and kinetic sand to squeeze and the emotions fan to pinpoint how he’s feeling so we can understand and act accordingly. If he’s angry, move him to somewhere quiet and dark away from his peers, if sad a cuddle and reassurance. You get the picture. So I’m doing this at home, with good results, more speech, more trust, I think he feels more understood. At school we spent an hour putting this in place and when I come to use it it’s not there. Banging head against a bloody brick wall.

So we have a meeting Wednesday where they are going to try to claim that nothing’s working and maybe he’d be better somewhere else. I will counter with it’s not been tried sufficiently or to standard. But I wonder if it’s worth looking elsewhere if they can not follow a five point plan. He has an EHC and an IEP and it’s not being implemented.

We don’t know what to do for the best. They’re happy to take his extra funding money but not do the work. He will be moving into year 3 in September and he won’t cope with the current set up. He’s autistic. Expecting him to just stop being autistic because he’s in mainstream is ridiculous. A few tweaks and he can stay with his friends. I worry that kids like Olly are being failed because mainstream are stuck in mainstream ways and special school places are very limited due to funding cuts. He doesn’t fit the criteria for special school, he isn’t “normal” enough for mainstream. He’s in limbo. Homeschooling him would be more isolating for him.

We will see what happens this week but I don’t see an easy solution to this 🙁

Xx

A perfect Christmas

The run up to Christmas was not particularly good behaviour wise for Oliver. All the changes affected him so we took the pressure off, no homework and talking about the changes and learning Christmas sign. School reported an increase in his running off and concentration but it was nothing unexpected. Even so we decided to learn from lessons past to make it a perfect Christmas for everyone.

We went to carols and crib service on Christmas Eve and we decided to tag team it. Max and Popples love carols by candlelight but Oliver thinks it’s more fun to sit on the bishops chair or run up and down the narthex pointing at the safety notices. So me and dad decided to take it in turns to stay with him, swapping after every carol so it was less stressful and everyone got to take part- in their own way. We also now know every safety sign and exit in the church-bonus!

After church we came home to a drink, chocolate bar and the opening of the eve present, which is new pyjamas. Oliver even joined in by putting them on for ten minutes before changing into his usual pyjamas and Owlette costume. We left sherry and mince pies out for “farmer Christmas” and a carrot for the reindeer then they went to bed. Well, they went upstairs and messed about for two hours whilst we tried to build the playmobil and other things before the big day. It’s surprising how many times a four year old needs a wee in the space of thirty minutes. I think we got to bed about 2.

They were up at 8 the next morning, we had to rouse a grumpy Max but he cheered up when he saw a box of Maltesers sticking out of his stocking. This year Olly opened everything. Within an hour. No three day opening this year, his little fingers scrabbled at the sellotape and his face when he saw he’d got what he asked for was priceless. He asked for an owlette teddy from pj masks, Popples had asked for a fingerling and Max had asked for some very specific videos. Santa delivered. They all seemed really happy – a win for us this year.

Christmas dinner was beef wellington, chicken or festive Bolognese- it’s like normal bolognese but you get to pull a cracker and wear a festive hat. The boys decided that a full family dinner (mum, daughter, son in law and granddaughter) was too much so they ate in front of the tv watching a Christmas film. Then came in for pudding.

They stayed up later than usual, playing nicely and colouring then running around and squealing. Eating what they wanted and they even got a fizzy drink! Eventually went to bed, and to sleep. And I got a “merry Christmas” off everyone at bed time. That was one of the best gifts that day.

This Christmas there were no meltdowns, no fights and no expectations. Not much money either but the kids were happy and relaxed and we were more so too. We adapted so everyone got to do something they wanted at Christmas. We prepared for the worst case scenario and as a result I think we took pressure of ourselves as we had contingency plans and we knew that we were on the same page and what job each of us had in every scenario. We had a perfect family Christmas. Anyone looking in would probably not think so but they don’t count, they’re not us.

Hoping your Christmas was the best it good be

XX

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

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

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

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