I’ve decided to leave blogging. It has served its purpose and I no longer have time to write about anything due to circumstances at home. I’d like to thank you all for reading over the last 2 years or so. I’ve learned loads from everyone and I’d like to thank you for sharing your lives with me and letting me share yours. I am on twitter @familifeasd. If you’d like to drop yours I’d be happy to follow. Hope everything works out for you Silveryew x
Max flaps and rocks. Oliver has to dance or bounce or spin. I’ve never tried to curb this. I’ve even had meetings at school about Olivers behaviour where I’ve told them this needs to be accommodated. I didn’t understand why, I didn’t really care about the why, I just knew it was something they had to do. Finding out the why though, has helped in my fight to get the necessary accommodations made. I read a blog by Neurodivergent rebel -Christa Holmans and one of her posts was about how stifling her stims made her feel. I would link it but I don’t know how. But it’s worth a read if you find it- am I allowed to do this? If not I’d appreciate someone saying so. I don’t want to get sued.
Since then I joined twitter where there are many actual autistics who don’t mind being asked questions which is great. They can speak from their point of view and it helps me understand what my sons might be feeling or how to help them better. I can talk now to other mums who are going through the same kind of struggles we all are as parents. It’s like a win/win.
Oliver had a really hard time in school last year. So much so we had the behaviour team etc in. I think I’ve already written about this so I won’t go on. This year has been great so far (touch wood) as schools approach has been different. The senco is on the ball, she seemed to really understand that it was their attitude to him that needed to change. He now has “brain breaks” built into his day. He has a spinner he can sit on and spin. He has cushions and a bean bag that he can hide under when he needs to block it all out. He doesn’t have to wear shoes and socks. He has 2 chewbuddies and he has blu tac for fiddling with when doing his work. He has an “outside” card for when he needs to run. As a result he is sitting, or lying on the carpet and learning. He knows he has so much work to do each day but instead of it being overwhelming and stressy he now has the flexibility and means of telling them it’s too much. He gets the work done – I know he has to do that after all he’s at school to learn. But now when he takes himself to his cushion corner (or asks for a break) his TA says “work next Oliver” instead of trying to force the issue. They say it’s usually 5 or 10 mins then he comes back and does his work. There’s no tears, there’s been no meltdown, there’s the odd squeak of protest but he’s so much calmer than last year. Sometimes he just does a lap of the playground and he’s ready to do half hour of maths. I knew that if they gave him this control it would work better. It’s not pandering to him, he can not help this. This is part of who he is. He isn’t being awkward but it’s taken me 2 years to get them to understand this. And no it doesn’t make the other kids ask why he’s getting time to run about or play up because kids know and they get it. They don’t have the rigidity of societal expectations built in so much at that age.
My kids can’t sit still. What kid can? I remember the head saying that to me “he just can’t sit still, he’s disruptive”. No love, you trying to force him to be something he’s not is causing disruption. Maybe it’s cos I’m used to it that it’s not an issue. Half way through a game or building session and he gets up to let off steam. So what? After reading how it could make the boys feel repressing it I’m glad I took the route I did. He’s getting through his work better than ever because he’s being understood. I’m glad I had the Why? in the end. Some people don’t need an explanation. Unfortunately many do.
I’ve never been of the opinion that I know best. I’ve never thought I know it all. I’ve never wanted to shut down opinions. I think working together, parents and autistics, we can make the world a better place. It’ll take time- change always does- but we can do it. Understanding a behaviour doesn’t mean you are trying to change it. For me it means that I can ensure my sons get the support they need. I’m thankful for everyone in the autistic community, I learn from all sides, which makes me a better parent for all my kids
When Max was first referred to Speech therapy, as it was then, the focus was on getting him to talk. To use language. I was told to not give him anything unless he made an effort to ask for it. I was young and didn’t know much about autism but even then that struck me as cruel and not very helpful. I’d model language for him but also learned some makaton as a few kids at a support group we attended used it. School introduced pecs but no one quite knew how to use it.
Now he uses a combination of methods, and I accept everything even a gesture or pointing. He has access to pecs, a few words, we use choice hands and anything else he decides to use- he is trying in his way and it’s up to me to learn from him. Surely it’s better to be able to understand him rather than causing distress trying to force him into something he can’t do.
When Oliver got referred to Salt I was sceptical but it has changed. We have a really good therapist. She showed me the correct way to use the PECs and she also uses makaton. The focus wasn’t on getting him to speak. The focus was getting us on the same page. Understanding that before anything he needed to see the point in communicating with me. If he led me by the hand I was to follow, if he pointed I was to respond. Keeping language to 1 or 2 words so as not to overload him but modelling language along with the sign.
He did realise there was a point so she introduced Pecs using a food item as that was his motivator. He realised quickly that the picture exchange got him what he wanted quicker than dragging me around. He learned a few words and some signs- chocolate, biscuit, blue crisps. Alongside this we took party in a play therapy study where Olly did the leading and I waited to be invited into his world. I was not allowed to push my agenda, ask any questions but was allowed to model language. After 3 sessions he realised that I was going nowhere, that I was happy to sit with him and watch what he did, helping find the bricks or whatever he wanted and not take over. Then he started to direct me, often silently, but he knew it didn’t matter whether he spoke or not. Mummy was playing and not asking him to do anything. The play was quite repetitive but eventually new things came in, new words came in, new interests new signs and a new relationship blossomed. I hadn’t realised just how much pressure he felt under everywhere. Once he could relax and expectations were removed he got more confident using his words. If he said no, I’d listen and respect it. He was in charge in these sessions. He was much more amenable to the speech therapy sessions I ran. He knew there was give and take, that he would get his chance to be in charge but sometimes he had to do the work that mummy said.
It’s taken me 2 years to get school to understand this. Reduce language, don’t ask too many questions, give him time to think, just because he doesn’t talk much doesn’t mean he has no ideas or can only follow a leader. At our last speech therapy session I was given a list of questions- it’s how to progress with asking him things, simple questions to more complex-in time. We also got a statement card which I’ve copied and laminated. Instead of single words they are 2 or 3 still with a picture with things like “I’ve had enough” “I don’t like it” “I don’t understand” “I’m frustrated” etc We keep this handy and we point to it when we recognise an emotion point to it and use the words. Hopefully he will either use it or learn the sentence to use. Although saying that he says “go now” when he’s had enough in assembly so he is finding his way around language.
I’ve told school that all communication forms are acceptable and should be treated as valid as speech. I don’t think we’ve won the battle yet but we will. I’m not saying he should get his own way all the time, but you can validate his feelings, explain things and tell him or show him a timetable of things that need to be done. Our senco is working hard to try to get staff to follow the rules, ensuring he has “brain breaks”, he has blu tac as a fiddle toy, and all the other things that I’ve shown her do work. So far this term he has spent 95% of his time in his classroom compared to 20% last year.
I think our ST has made me look at it a completely different way. Is it my job to make him talk or is it my job to help him communicate? By letting him choose his communication method and responding to it all equally I think he feels more confident that he can be understood, and is valued. I’m not perfect, I’m still learning every day but I am listening to my sons- they have lots to say- I just wish I’d known all this when Max was little. I need to help Max find his confidence, hopefully then he will realise what Oliver seems to have- mum doesn’t care if you can’t do something, she will help you in any way you want, it’s about what you need Max, not what anyone else thinks. Mum goes nowhere, she might not always get it right, but she’ll listen to all the clues you give and you can try to figure it out- together.
The talking tom app has really helped Oliver as it copies his noises. He also likes filming us playing or him practicing things with his tablet. We have a ten minute video of him jumping on the bed counting to 100. The talking tom is really annoying but whatever it takes to get him confident is all that matters.
I have been a bit glum recently, so I was in the garden trying to head off the depression by digging up spuds and pruning stuff which usually helps as I can think and sort my head out before resuming real life. It’s my therapy. My brain decided to push me to the brink by saying “look at all the things you’ve never done and will never do”. My brain does not like me much.
I have never been asked out. Now I know that may not seem like a big deal but it does affect you and your confidence especially when going through your teenage years. So I asked myself why. I may be a minger (apparently my sisters are the pretty ones), or it may be my social awkwardness or it maybe because I am really bad at flirting. I once flirted with a guy for 6 months- he didn’t realise I liked him til I said those words- that’s how bad I am. Worse than Ross from friends. Anyway there could be a million reasons.
I thing the main thing is though that I never followed societal norms. If I liked someone I’d ask them out. A contradiction really in someone so shy but I am quite practical. What’s the point in mooning over someone if they don’t like you back, never knowing is worse than risking rejection. I had a friend at high school who mooned over someone for 4 years and was aghast when I advised her to ask him out. “He might not like me” yeah then you can move on. Apparently it was unthinkable to do that. (I know today we live in a more equal society but this is going back 20 odd years).
So I don’t know if I was seen as forward by boys which may have put them off. Of course I got many rejections, even after I stopped wearing braces. I was quiet, clever and had no boobs. Not exactly what the boys at school wanted. Oh and I can argue in an empty room. I did get a couple of takers. Funny that when I got a boyfriend my so called friends would suddenly find them attractive and flirt (when did they get lessons?). My first boyfriend got propositioned by my friend whilst I was with him and another friend told him I’d asked him out on a dare.
I also proposed to my husband. He was my first boyfriend, he moved away and we met up again in our 30’s. I tried flirting but it didn’t work again. Somehow we got together and after a year I decided to propose to him. Apparently he’d liked me for a while but we only started dating once I’d made my move and bared my soul. I knew waiting for him to propose – well it wouldn’t happen. And even if he said no to me, after all it’d only been a year, at least he’d know how I felt and it must be an ego boost if someone wants to marry you.
I know women who’ve been in long term relationships and talk about waiting to get the ring. When I suggest them proposing they recoil. They can’t do that. It looks needy. They want the romance. Etc etc. Do men not want that too? I whisked mine off to Iceland as he’d always wanted to see the northern lights. I proposed on a mountain under the lights. I had never been so nervous. But he said yes so that was ok, even though I’d prepared for no or not yet.
So I’ll never be asked out or proposed to. I’ll always be socially awkward. Thankfully I have no need to flirt anymore. I may be a minger. I’m probably too practical. But I have a family who love me and accept me, and my eldest gets to relive my past flirting and amuse herself.
So take that, mr brain. Yes there are things I might never get to do but I got to watch a bee collect pollen, I got to watch the light dapple through the trees, I got to make cloud shapes. I got to play scary tree and squash mummy. Gardening is never a solo occupation for long 😂Ok I then got to scrub mud off everyone in the bath but sometimes I think I need to look at what I have. And next time my brain turns traitor that’s exactly what I’ll try to do.
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?
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.
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.