Peppa Pig World

This year Popples asked if we could go to Peppa pig world at Paultons park. We have been before but she was a baby and therefore it doesn’t count that she’s already been. Found a hotel and 2 day tickets for four of us, including breakfast, for £380 which I didn’t think was bad.

Peppa world is a section of the park. There’s the lost kingdom part with dinosaurs but we didn’t go to that bit as Oliver couldn’t go on the rides with his leg, and other bits too. We drove straight there so we could spend the afternoon then go on to our hotel. I’ve never seen anyone so excited as Popples was when we got to the entrance. “Can we go on the balloon ride?! Look it’s windy castle” and so on. With it being so hot a lot of families had left for the day so we queued and went on some rides. There were new additions to last time which was very exciting.

Oliver could go on everything in Peppa world. They are quite gentle rides but he was too big to be accompanied by an adult on George’s dinosaur ride. We explained the situation to the staff member on the exit gate, about his lack of danger awareness and could he still ride. “Of course” was the reply and they radioed for a staff member to walk alongside him in case he did his leaping thing. He didn’t hold on but he didn’t jump off. The boat ride caused another fuss as he decided to throw his hat into the water. You know because you have to throw something if there’s water 😂. The ladies in the next boat got it out for us and we thanked them.

The next day was even hotter, we bought lots of water and juice for everyone. Popples wanted to meet Peppa and George so we stood in the queue for 20 mins, applying sun cream, until it was her turn. By this point, Olly had had enough and wouldn’t meet them but we got a lovely picture of her with her heroes. He pointed to Miss Rabbits helicopter ride but the queue was 25 minutes long! I had phoned on the Monday to explain about his leg and the helpful woman had advised us to get queue assist. This meant that he’d be able to queue at the exit and not wait as long. Now I don’t really like doing this as learning to queue is important but he had a very sweaty boot on, it was a million degrees and he was building up to a meltdown. So I took him for the queue assist pass and we went on the helicopter ride straight away which sent him back into a good mood. Again as it was hot, a lot of families weren’t staying so we queued for all the other rides (making sure we’d be on next) and he was really good at waiting. We only used the pass once more on a 30 minute queue.

There was a rollercoaster in the mini beasts section that they wanted to go on. They screamed and laughed their way around……3 times. She insisted on the pirate ship then wanted to get off halfway through. They had as much enthusiasm for the little rides as the bigger rides.

There was a section called Africa where they had animals and insects that she liked. Olly wasn’t keen on the dark area. And there was a little picnic area under a tree where we went for rests and drinks and where the ducks hassled us for food. Cheeky ducks! Went mad for the sausage roll crumbs. The big Peppa toy shop obviously couldn’t be missed and she asked daddy for Dr Brown Bears mobile hospital and got it.

The hotel wasn’t great but we managed. The heat swelled Olivers ankle and I cooled it whilst trying to get him to lie still so as not to aggravate it. Poor little man. He has a fair turn of speed on it now though.

All in all it was a good break for us all. Would have been better without the broken ankle but it didn’t impact too greatly as we just avoided the stuff we knew would be a no. The staff at Paultons Park were fantastic. Helpful and friendly and made it all about the kids there. A real family friendly and inclusive place. They even have a list of rides that aren’t accessible on the website so you can plan your day. The pass was a godsend although we only used it twice. It meant that we had the option of using it so took some of the stress off us.

And if you don’t know who Peppa pig is, then where have you been hiding?

Xx

A & E and Autism

Last year Oliver got an eye injury when we were assembling the trampoline. We waited in A&E for 4 hours then had to go to another hospital, and another wait. Today we had to go to the emergency room again and what a difference a year makes.

The kids finished school on Friday, went to a party yesterday and Olly came back injured. He’d jumped off a slide at a soft play area and landed on his ankle. Being him, he refused to leave until it was finished and he hobbled around all night, his dad saying it was a sprain. This morning he could bear no wait at all and there was some slight bruising and swelling. I wasn’t convinced it was just a sprain so hubby rang 111 for some advice. With him being pretty much non verbal and not expressing pain the way the average person does they recommended hospital.

Expecting a long wait I packed a bag and hubby dropped us off. They were expecting us, the receptionist rang through to somewhere else explaining a 7 year old autistic boy had come in with an ankle injury. We were told to take a seat in children’s a&e. We had just sat down when we were called through to treatment/assessment room. The doctor introduced herself to Oliver, asked if she could look at his leg and watched his face for pain reaction whilst assessing him. Sent for x ray- and she got us a wheel chair. Fast tracked through x ray. The lady told me how to hold his foot for the 2 pictures, explained to him about taking a photo of his bones. Waited until he was ready. One position really hurt but she waited until we started a counting game that distracted him. Didn’t try to rush us or make us feel like we were being awkward.

Straight back to treatment. Ligament tear and cracked bone. Great a cast! Oh no. Fracture clinic was closed but the looked through the stores in their department and found a boot, so he could keep on his feet without crutches. They showed him the boot

and asked if they could put it on. He wasn’t keen but again great patience was shown. He doesn’t like it. Trying to keep him still in a back slab would have been impossible. He can walk in it and still managed to climb on the swing.

They listened to him, even though he hardly said a word. They listened to me when I explained about his pain and his need to be on the go a lot. They even showed me the special sensory consulting room with lights and mats and bubble tubes that he would have been put in if there had been a delay. We were in an out within an hour. From reception to release he was treated like he was the patient. They talked to him, they asked his permission, they knew the situation could be stressful and tried to make it less so. I was there to help but for once I was secondary. For the first time in a long time I didn’t have to start with autism basics. They knew and helped massively. What could have been a day of massive stress for him and not understanding anything and meltdown wasn’t because of our fabulous hospital staff.

Supposed to be going on holiday this week. We have our fracture clinic appt in 2 weeks and I have four weeks of trying to keep this boot on. Will it stop him climbing? Will it hell. Will he be more careful? No. Will he be ok next time we go to hospital? Yes. I’m positive he will.

So we didn’t even get to the first official day of the school holidays before ending up in casualty. Can’t wait to see how the rest of the summer pans out. So grateful for our NHS. The staff are amazing and we don’t have to worry how much this would cost us. Autism is finally being understood, a long way to go but at least it’s starting.

Xx

I used the f word at a teacher!

It’s not like me. I am quite laid back, take things in my stride, try to stay positive and if something doesn’t work- well a shrug of the shoulders and a new approach thought of. I can fight when I need to for my kids but it’s never at individuals, I’m talking bodies like the DWP or LEA.

After the EHC meeting and realising Oliver didn’t fit the school or the dual school placement we did a lot of talking. The LEA are avoiding me, I realised how big the gap is growing between him and his peers, how isolated he’s becoming and I can’t fix it immediately. Added in lack of sleep, end of year disruption at school, assemblies to attend, paperwork to go through as well as everything else I was feeling really frazzled. Olivers class were putting on a performance and one morning the teacher approached me to discuss his role in the play. “He might not sit through it all so he will be near the door in case he has to leave. We don’t want him running around when bored and not letting the kids shine. They’ve worked so hard”.

I snapped. I’m not proud of it but I snapped. “When does my sons get a chance to shine? Every day is normal day why can’t he have 10 minutes to shine? You’ll all breathe a sigh of relief when he’s gone. You’ll be saying thank god that fecking child is gone” said in a very ranty voice and then I cried. I walked off and I don’t know what he did then. Usually I’d have said “can we discuss this in private please so we can find a solution to keep everyone happy” but I snapped. You see he never got to the carol concert at church, or the Easter service or the Mother’s Day assembly, or the music concert. This felt like another exclusion.

A week later and school sends out a text about the disco. What disco? We didn’t get a letter. I went into school and asked to speak to someone about discrimination. I think I’m making enemies everywhere 🙁. It’s up to him if he wants to go to the disco. If he goes and stays 1 minute then that’s his choice. He can decide some things for himself. I got him a ticket and said I’d stay to support him. He loved it. Stayed til the end and wouldn’t leave til others had started going home- he didn’t want to miss a second. He span round, bought glow sticks, lay on the floor, jumped around and chased the lights. He was so happy.

I’ve spoken to the senco and his teacher about how Oliver is a person with likes and dislikes and can express them in his way. I’ve explained that although his progress might not be giant strides but tiny steps, to him and us they are just as valid and praiseworthy. Don’t make choices for him based on his behaviour from before. He is growing and changing every day, like any other kid. Try him out with things before discounting them. He is autistic, he’s a little boy. He is both at the same time. Don’t put him in a box. Don’t assume he can’t! He might not want to, which is a different story, but if he doesn’t try things then how do we know what he can do. How can he learn what he likes and doesn’t. All he needs is equal opportunity.

They did a dress rehearsal for the rest of the school. Popples said he was amazing, he danced and sang. At the parent performance he played with blu tac and slid off the bench. He sat through it all both times though. He was with his class and he didn’t spoil it, he just did his thing and joined in when he felt he could. Of course I wouldn’t want him to ruin it for the other kids, I made sure I sat somewhere where I could intervene if necessary without causing much intrusion. I’m under no illusion it can be difficult for him in that situation. I think things just built up. It felt like he was being marginalised. If I am expected to think of 30 other kids then why is no one expected to think about the feelings of 1?

I have apologised to the teacher. I shouldn’t have lost it. I shouldn’t have swore (we weren’t in the classroom). Being honest his teacher this year has put so much effort in with Olly. Finding ways he can access the curriculum on his level, doing extra work on the resources he needs, actually spending time teaching him. I think he was clumsy the way he spoke to me but I think I was wrong to rant at him. It’s not like me at all. We have a week left at school and I suspect he will now avoid me. I’ve apologised, I’ve acknowledged the work he puts in, I’ve thanked him for his honesty at the ehc meeting but I suspect I’ve broken our working relationship. Popples has a year til she’s in that class, so he has a year before he has to deal with me again.

At the end of the day I’m only human. And I’m the only one who will fight so hard for my kids- all of my kids. They’re all special to me.

Xx

EHC review and honesty

Oliver has been struggling at school. Really struggling. I have been called in on numerous occasions, the inclusion officer and behaviour team have been in and I’ve been in countless meetings to try to resolve some problems. I got so concerned, especially as he’s moving to year 3 in September where it’s a lot of sitting and learning, which he can’t do, I called for an early EHC review.

It turns out he is spending 85% of his time in a 1 to 1 situation or 1 to 2 depending on his mood as it’s too difficult for one member of staff to be with him. He is spending little time with his peers, his recent behaviour has accounted for 90% whereas education has taken the back seat at 10%. He is not doing well in school. There was recently a sports day and he got ready in his kit but stepped outside the door and was overloaded with noise and the sheer volume of people he went into crisis. I tried to find him on the field and was told he was inside. I got to the office and they immediately buzzed me through without signing in. Once I got through the door I could hear him screaming in the hall (down a corridor and fire proof doors) I ran down and was met with two staff who looked helpless and him screaming and bashing things. There was destruction everywhere. Benches overturned, making boxes emptied but I went straight to him and held him tight. He calmed down in minutes and helped tidy up. Took him back to class and lay with him on his bean bag for an hour until he indicated I could go.

In the meeting I was told he was teacher assessed for his Sats (no surprise) and disapplied from phonics test – he doesn’t read phonetically he learns words. I was told that a classroom environment is not suited to his style of learning. The stress of the classroom contributes to his sensory overload. The gap between him and his peers is widening and he knows it. He won’t attempt things he sees others do easily because he doesn’t want to show he can’t do it. He knows he’s not the same. His sense of worth is diminishing at school. He can’t be like them, he tries but he can’t fit in. It’s too much. Trying to filter the sounds and the crowds and learn is just too much.

I’ve talked about dual placement but I phoned the school that offers it and it’s unsuitable for him. Also keeping him in mainstream even part time is going to be of no benefit to him. He’s not going to get anything more from them.

After the meeting we did a lot of talking at home, gathered more information from his teaching staff and requested a further meeting with the Senco. I told her we have decided that he needs a specialist placement. He needs a special school where they sign, use Pecs, have the facilities to let him learn through play and where his peers are like him. There were a lot of tears at the thought of him leaving, they have supported us so much and he leaves a mark on people, in a positive way but they understand that he needs more than they can offer.

Now the LEA are saying there’s no places for him at special school so we have another fight on our hands but we are ready to do whatever necessary to get him the education he deserves. We don’t expect exams and university, we just want him to feel like he belongs somewhere and his achievements whether big or small are celebrated. He has come so far with his language and understanding and his maths skills are phenomenal. I don’t want him to lose what he has and if he goes no further then that’s fine. He doesn’t fit in mainstream school and it’s not fair to expect him to. The pressure he is under must feel immense to him. We have requested a sensory assessment too and this could be easily implemented in a specialist school setting. I hope we are making the right decision, there isn’t another option except this route. I know at home he had calmed a lot but here he is accepted, loved, accommodated and it’s give and take. He does work for me and I play his games and follow his lead so he feels valued and that his ideas are just as important as mine.

It’s been a long and hard month or so and it’s not going to get easier until we get him in an appropriate school. It’s not the autism that’s the problem, it’s the red tape and budget cuts and trying to get someone to actually speak to me. He deserves as much as any other kid, and I will not let him fall through the cracks.

I’m glad his teacher was honest with us. I’m glad school are supporting us. We have plans in place in the interim to reduce the pressure on him in school. We tried mainstream, and it was ok until the focus changed from learning through play to more formal learning. He learns through play and that’s just his style. It’s not a bad thing it’s just different to the norm- but hey it’s our family – we don’t do normal.

Just have to wait for the draft EHC plan to turn up then reject it. It’s no longer appropriate. He deserves the best not make do or putting sticking plasters on it. Change his environment and his behaviour will change. If he’s happy he won’t need to squeeze a tube of paint all over the classroom, or maybe he will cos that sounds like really good fun! 😂

Xx

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