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

Advent, Autism and a grey hair

It seems that once Halloween and Bonfire night are finished that Christmas starts. When I was little it started at advent, not the first week in November. School routine changed, carols were being practiced, decorations up in the shops along with the Christmas music that I’m now fed up of listening too. Oliver did not cope well. He’s excited but doesn’t know how to channel it so we’ve had some regression and some behaviour issues. Hitting out at me and his TA and even the teacher when he tried to get involved without using the strategies. Sleep disappeared pretty much altogether, no concentration and needing lots of rough and tumble play.

Of course all children get excited around Christmas, Popples behaviour has changed and she’s got very loud. We can mainly channel her or get her to talk but Oliver threw his emotion cards at me and burst into tears. So we’ve been very calm, cut right back on learning and therapy so there’s no pressure on him. He’s used the nurture room and library at school to have some Christmas free space. We put the tree up on the first and he seemed to settle a bit having a focal point. No flashing lights, no tinsel (it itches). He tried to open all his windows in his calendar (no chance, sunshine) we know he knows how it works. He did at one point open my number 24 then pointed to his and said “24. Open. Yes” showing me that as mine was opened it was only fair his was opened too. I shouldn’t have got playmobil calendars.

He’s collected all the interesting tags off presents from under the tree so I suspect that may cause some chaos on Christmas morning. He’s done his list “owlette teddy yes please” which he’s been asking for since mid November. Santa came to school with a reindeer and the little ones went to see him together and had a cute photo done. My boys have never been scared of Santa. Max used to laugh and stroke his beard. Oliver goes straight to his knee and gazes like he’s his hero. Popples has never been keen. Last year she said “I don’t want him in my house. Ask him to knock on the door and give presents to daddy”. Really freaked out at the thought of him coming in. We watched a programme today where someone left Santa some milk. Her comment was “milk! He’s not a baby. Where’s the sherry?” We are not alcoholics, by the way, but we always left sherry for Santa.

Over this advent we’ve had to take turns going to church as Olly just can’t handle it. It’s a shame because it’s always nice in church at advent. I did Christingle service with Popples. Olly has broken things, decorated to ceiling a bit more with various food items, scissors are now hidden, emptied toy boxes, ripped up papers and we lost two baubles. He also found the eggs. We’ve tried hiding them because we know he’s a cracker, but he always seems to find them. Hubby walked into the kitchen and “can you clean the floor whilst I do the wall and door?” He’d done it again. Only 2 this time and helpfully put the shells in the bin. I was kneeling on the floor scooping up egg when I felt a drop on my head. Yep. Egg. He’d thrown it at the ceiling and I should have looked up first. I know better than to go to the floor without checking above! I’m not a rookie. I blame tiredness. So egg mopped up and went to sponge the egg out of my hair until I got five mins to wash it. And I found my first grey hair. I’ve been going redder as I age which happened to my dad too, so thought I’d get away for another few years before the grey. Sadly not. Oliver has succeeded in ageing me. Well played, Olly, well played.

At least with a family like ours there’s no pressure to have a perfect Hollywood Christmas. We’ve tidied, bought the boys favourite foods and made their rooms suitable for quiet times complete with sequin swipe cushions that they love using and actually seem to calm them. Oliver is having Bolognese for his Christmas lunch, Max may have fish and waffles if he doesn’t want chicken, Oliver took 3 days to open gifts last year, Popples will be up and down all night Christmas Eve and me and their dad will smile through it all, play the games, and hopefully watch three children celebrate Christmas their way and be happy. It may not be Hollywood perfect but you know what? We think it’s perfect. It’s a hard time of year and very testing but dad is trying so hard. He’s stayed calm. There’s been no shouting. There’s been lots of guidance given and accepted. Oliver doesn’t automatically turn to me for help or comfort now. He will go to dad. Small steps but they give me hope.

Anyway however you all do Christmas I hope it’s as perfect as ours will be. Have a very blessed Christmas.

Xx

The Nativity Play

Our school still do a nativity in the EYFS. It’s not the traditional story as such, last year it was a wiggly nativity, this year it was about how they got the swaddling for Baby Jesus. All the traditional elements are there, though, and I really look forward to it. Oliver was lead donkey when he was there, Popples was an angel last year and this year she got chosen to be a narrator. My really shy daughter would have to speak in front of all these parents. I was a tad concerned.

We practiced her lines and she picked them up well. We explained how she would have to say them in front of lots of people but that her teachers would be there to help. I thought she’d bottle it, she doesn’t like people looking at her, so how would she cope with 100 people looking at her?

She was amazing. She didn’t need prompting. She was loud and clear and not an ounce of shyness. Have to admit I got a lump in my throat. So proud of her.

The star that was supposed to show the wise men where to go refused to go on stage. One of the lambs couldn’t see his mummy so leapt into the arms of a staff member crying. A soldier got on stage saw his mummy and changed his line to “I want to go home now”. 2 angels were swapping headbands (halo’s) throughout. It was brilliant! These kids are 3-5 so for them to do as well as they do, remembering lines and all the songs is astounding!

The rest of the school do a carol concert/Christmas story at church which we missed due to a SLT appointment ☚ī¸ but we got the nativity which made it feel like Christmas. And I won the raffle!!

Xx

Christmas fair

So Oliver has not been coping very well with the changes and excitement of the festive period. He knows that it’s nearly present time and after doing his list, well one item, he had a wobbler because as far as he was concerned he’d asked and waiting was not part of his deal. He knows the advent calendar counts down and then he gets a present so was just trying it on. Popples isn’t sleeping as there’s a million questions to be answered about Jesus, Father Christmas, angels, Mary/Gabriel/Joseph triangle, playmobil, puppies and star versus fairy for the tree top, to name a few topics we’ve been dealing with.

The last few weeks we’ve had to take bits in for the Christmas fair. We never actually go to it. It’s so busy and loud that Olly just can’t deal with it. This year as Emily is on maternity I asked if she’d come collect him while I took Popples to the fair. I went to inform the office staff but then the conversation took an unexpected turn. One of the teachers had heard and said “why not come earlier? Before school finishes so you can at least do some stalls”. Then the Senco popped into the office and they decided that they would offer kids like mine the chance to be collected 15 minutes earlier so they didn’t have to deal with the crowds and could take part.

I went early to pick them up and they met me in the hall. They’d seen it all being set up all day. Popples was a bit reserved as it was something totally new to her but Olly came in with a massive smile and bouncing with excitement. They adopted a teddy each, paying the money over and choosing their new soft toy with no pressure, no crowds, no loud noises. He signed thank you. They went on the chocolate tombola where Popples won a tub of Quality Street, the rainbow draw, find Rudolph and then they perused the cake stall. He had the opportunity to choose, pay and use his manners. Everyone was so patient and kind. It was lovely to do something with both my kids that everyone else gets to do. They were absolutely made up. She told her dad all about it, and Olly showed him his adopted Ubercorn.

I have to admit I felt a bit cheeky being allowed in without having to queue and hustle, but school said “don’t be daft”. They felt bad for not thinking of it before. Our kids don’t go to the discos (too loud), after school clubs (change of routine) and don’t get invited to many parties (still a mystery as to why) so at least they could help us to experience this. Six families got the chance to enjoy the Christmas fair this year who usually wouldn’t. We loved it. We felt part of a school event. We got to do it together. Popples and Oliver got to be like other kids for half an hour, choosing, playing games and paying their money. It doesn’t sound like much but to me it was a really big deal. I don’t think anyone realises how little tweaks can make such a difference and bring so much happiness to families like mine. Popples misses out on some things but when everyone talked about the fair, THIS year she got to join in!

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