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

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

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 ☹️ but we got the nativity which made it feel like Christmas. And I won the raffle!!

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

Olobob Top.

Olobob Top was created by Leigh Hodgkinson and Steve Smith.  It is a programme currently shown on Cbeebies aimed at pre-schoolers.  I knew nothing about it until May this year when Oliver’s TA came out of school with him and told me about this “bigtop hill thing” programme he’d found on the computer.  It had apparently amused him no end so she was going to find the proper name and make a card so he could put it on his “working for” board.

Now I know that sounds nothing in itself, kids go through phases but let me expand.  From age 2 Oliver went to a private nursery.  He stayed there (3 sessions a week to help socialisation) until he started reception class.  He never brought me a picture home.  Never painted anything for me.  In almost 4 years I never got a painted picture, a drawing or even a scribble.  I asked school not to send home teacher made things like mother’s day cards unless he’d done it because what’s the point? That’s a personal choice, if others want them then that’s fine, what works for me doesn’t work for everyone.  It hurt a little especially as Popples was painting mad and my cupboards were full of her pictures, except a space I’d saved – just in case.  The day after Mrs D (TA) had told me about this thing he’d found on the computer I went to pick him up as usual and she came out smiling.  “Show mummy” she said to him and he presented me with this printout of a scene from Olobob Top (yes she found the right name) that he’d created himself.  He pointed to something and whispered “Tib” so I repeated it and praised his beautiful creation.  He looked quite pleased.  We showed it to Popples, I took a photo and sent it to his dad at work.  I found the blue tac and stuck it up.  He had made it!

The next day he came out again and he was smiling and Mrs D was practically bouncing. He handed me 2 sheets of paper and said “olobob top”.  I looked and almost cried- they were paintings!  not only paintings, but you could actually see 3 different figures and they were recognisable as Tib, Lalloo and Bobble.  This was the start of a new chapter for him.  Usually uncooperative at craft time, he painted, he crayoned, he drew on the conservatory walls (who cares it’ll wash) he made play doh models, he made characters out of stickle bricks and he verbally requested “computer”.  He often speaks in a whisper but some words were getting louder.

The biggest thing was reading.  I know I’ve talked about Julia Donaldson’s books allowing me to spend quiet times with him, but things changed when Mrs D gave him 2 books for his summer gift.  These were his books, they had his name in them.  One was a sticker book, and the other was a flap book.  He doesn’t like stickers.  I tried to show him the stickers go in the book to make scenes but I got screamed at “NO MUMMY! IT’S MINE!” ok fair enough.  He took his books upstairs out of my reach.  That night my husband put Max to bed and when he came down he told me that Oliver was currently sticking stickers all over his bedroom.  He didn’t know what to do because he doesn’t do stickers so I went up and said “what are you doing?” “Sticking” was the response – TO A QUESTION! “Sticking olobob top” he expanded while I stood looking at the stickers on the carpet, duvet, wall, pillows and chest of drawers.  “That is fabulous sticking! You are so clever. It’s beautiful. Well done!” The pride on his face nearly made me weep.  The I got invited onto the bed to look at the flap book.  I tried opening it but it got pulled away so I sat back and let him lead.  Eventually he moved it to within eyesight and pointed to the figures naming them.  He’d point, say the name then look me in the eye (we don’t demand eye contact in this house) and wait for me to repeat it. Then he’s nod and reconfirm.

Our next reading session was instigated by him.  He pointed to a pink bird on the cover and said “BIG” but I thought he said pink so I said “Pink”.  He shook his head, and I thought I was going to lose him, he doesn’t like it if I don’t get it straightaway.  He sat there and repeated it but we were having a miscommunication.  Eventually he took his finger and ‘drew’ the letter b on the bed, then I then g.  Light dawned “oh Big! big bird”. He then turned the book over, pointed to another bird and said “little” I repeated it then he pointed to another bird and said “small”.  I didn’t know he knew that word! We were having a conversation.  He was waiting for me to repeat, giving me eye contact and being in charge.  I didn’t touch the book.

Every day he was saying “upstairs, Olobob Top book” and we were reading the way he wanted to.  He was gaining in confidence and trusting me not to take over and let him lead me for a change.  One day he pointed to Tib and said “it’s Bobble” so I copied and said the same, he looked at me and burst out laughing and said “it’s not Bobble, it’s Tib” oh dear, silly mummy.  And that was the game that session, making mummy look a fool! But it paid off because the next day he finally opened the book and I got to see the inside, but just the first page. “Lalloo’s dress” so I added the word spotty. “Tib’s pants” so I added the word stripy.  Expanding his vocabulary with no pressure for him to say it back, just giving him a word he might not have but if he chooses not to use it at that time that’s fine.  He told me shapes, fish, trees, the other characters.  If we are making stuff he says “you could make it up” and gets stuck in.  He also has expanded his wardrobe thanks to Tib’s stripy pants, which is lucky as he ripped the bum out of his tartan ones swinging on his curtain pole, and all his other jammies were stripy.

2 more books were released (and bought), although I’ve not proved myself worthy enough to be able to read Norbert’s shop yet I live in hope 🙂 We were talking about Christmas with Popples and he came over and said “Olobob top toys, yes, Christmas” so I had to tell him there were no toys which we confirmed by googling, so he asked for “dvd yes” and again I had to show him there wasn’t any. He did his sad face but quickly rallied and asked for Go jetters instead.  They have a laptop where he goes on and plays games, makes characters and scenes etc.  He asks for it “computer cbeebies” or whatever he is after that day.  He chooses to read with me, he does crafts, he has taken a passion of his and instead of it being confined to one repetitive game or action, he has brought it into more aspects of his life.  He hums when he is doing things now, he talks quietly to himself (still a lot of jabber but some words) when playing, he seeks me out to do things instead of me having to instigate it, he knows his choices are important now.  They always were but I don’t think he knew that.  Now he knows if he wants to talk about the size of birds for half an hour, then mummy will stay and have as much enthusiasm at the end as at the start.  I know there is a long, long way to go.  I know that I may never have a conversation with him that runs along more conventional lines.  I know his language is still miles behind.  I know the sound of his voice, I know his laughter, I know he can joke, I know he is clever, I know that what he gives is the best he can and I know that’s enough. He’s calmer, he’s more patient and he’s more willing to try new things.

I got a painting off my son.  He was 6 and I got his first painting.  That was enough, everything else that has happened is a bonus.  We were lucky he found something he felt so strongly about that he wanted to share.  I know that Leigh Hodgkinson, Steve Smith and the Olobob’s don’t realise the world they’ve opened to my son has helped him, and us, so much.  Thank you

xx

Why I blog.

I’d like to able to say I blog to do something useful like giving advice, being informative or a fount of wisdom like a lot of blogs. You can find advice on travels, hobbies, cooking, probably anything you can think of. People have very interesting lives!

I used to keep a diary. I’d write stuff down but I’m sure the people closest to me worried that I’d written about them and wanted to know but respected the diary rules too much to check. So for me blogging is really about just being a public diary of my thoughts and day to day life. Then if my husband and daughter really want to know what I’m really thinking they can read about themselves here. I don’t know if they do. I gave them the link, if they want to look they can and then talk to me if bothered. She requested I maintained privacy which is what I try to do with names and no photos, which is fair enough, but everything else is my truth. I say my truth because I suppose in any situation, everyone’s perspective is different.

So I got a blogging subscription. I didn’t want adverts I had no control over and I wasn’t joking when I said it was cheaper than therapy. A fellow blogger mentioned counselling and the cost the other day and I counted up how much we had spent and for not much return really. I’ve done counselling 3 times. The first time was an emergency 6 sessions block from the nhs. The second time was couples counselling due to outside interference and third was to fix things with hubby’s parents that they said they would pay for and attend and ended up not paying for any or coming to any that I was involved in. I think we have spent at least £800 on counselling. He got nothing out of it because he put nothing of himself into it. He doesn’t like people knowing his business, or showing emotion so he said “the right things”. It helped me but my opinion was if I’m paying for this then I may as well use it properly. Obviously I’m still a work in progress.

I started writing for me. To put down how I felt, to try to make sense of things. When you are talking sometimes hearing something out loud can make you think again or in a different way, so I hoped writing would do the same. Like I’m writing to someone not just writing in secret. I don’t know if this makes any sense, I’m rambling! Hubs said “will you be sad if no one reads it” and I answered no. He wanted to make sure I wouldn’t feel like a failure but I explained my reasoning and he was happy. I feel like a failure in so much of life, he was just looking out for me. Every now and then he asks if it’s helping and I tell him yes it is. I probably spend more time reading blogs than actually writing! I found a good gardening one. I found some written by people with asd and parents of asd kids, people with anxiety like mine, people who are starting life after uni, a great one who explores personalities and why we do things (Dr Perry- I’m always sending his links to my husband about the narcissistic personality blog posts), and some who just grab my attention as I’m flitting through instead of doing the mountain of chores I have lurking in the background.

What I say next may make me sound like a right saddo but I’ll say it anyway. I find I’m invested in these people. I cheer at their good news, cry at their heartbreak, listen to new ideas, remember how I was at the beginning of my own autism journey- they feel like people I know. I talk to my husband about them in the evening “we aren’t the only ones going to tribunal” and then proceed to tell him all about the troubles of others. And the triumphs. Due to all kinds of reasons I don’t have a sparkling social life. I don’t have many friends. I don’t mind, I’ve never been very social. But on line I get to “socialise” with a whole range of people I would never meet in my daily life and I’m thankful and grateful.

I don’t feel alone anymore.

Xx