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.
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.
We recently had a survey sent home with various questions but it was obvious what they really wanted feedback on after some protests were staged at schools around the country. You could send it in anonymously which I didn’t agree with so I signed mine and added a phone number. The question was how we feel about LGBT being taught in school with the kids. This has caused uproar among some communities who don’t want their kids learning about this stuff.
I put lessons in speech marks because some seem to think the kids are going to be taught the nitty gritty. I mean they don’t do lessons on the sexual act as lessons with primary kids so thinking they would do it for any other relationship is just crazy. The kids are taught about relationships and consent and healthy eating and all sorts at a level appropriate to their age group. Popples is in FS2 so they have been doing “what is a friend” where the teacher reads out something then the kids decide if it’s something a friend would do or not. They’ve done stranger danger, healthy food/treat foods, people who help us all at an age appropriate level. They discuss religions and family units too.
My kids go to a Church of England school. So they do a lot on Jesus as you’d expect. They also celebrate everything, Chinese New Year, Eid, Divali etc. There’s a mix of kids and everyone joins in with everything. The kids celebrating Eid tomorrow got greeted with “Eid Mubarak” this morning from staff and some parents. I’m waffling on now, I’m sure you get the picture.
Kids ask questions and I always tell mine the truth. Tempered for age and understanding but I won’t lie to them. We have a mix in our family, my older two have a dad from Pakistan so they are a different colour from my younger two who are part Italian so tan nicely but are white. My boys are asd so we aren’t exactly “normal” as families go. Popples noticed eye colour of her siblings before she noticed the skin colour “mummy why do I have blue eyes like you but Max and Em have brown like daddy?” The kids at school accept Oliver for who he is. They talk to him, partner up (then do all the work) play with him, some are learning Makaton they don’t see him as special needs with a label. They see him as their mate who struggles a lot but he’s been with them for 3 years. He’s just Oliver. They don’t copy his flapping or squealing, they don’t pick on him or leave him out. He’s different but the same as them. Kids accept, assimilate information and just get on with it. Mostly.
Parents are saying that learning about LGBT will confuse children, encourage them to “adopt that lifestyle”(?), corrupt them and they don’t want to ruin their innocence. Some kids come from families of single parents, step families, mum and dad, mum and mum, dad and dad, gran and grandad etc. No two families are exactly the same. What’s so wrong about talking about family set ups? What about kids further along in school who might feel they aren’t like everyone else? Why not talk about normal early on. How can you object to a story about a baby penguin with 2 dads. I mean a baby penguin!! How cute is that. And yes that is the kind of thing people are objecting too. Like I said it’s totally age appropriate.
Our family isn’t like everyone else’s. We love each other. We support each other. I don’t mind if my kids come home with questions, I’ll answer them. I don’t mind them being taught and teaching them that everyone is different but everyone is the same. My sons are autistic, I’ve seen how they’ve been treated for being different. Mainly by adults. I know many have faced challenges for being different, whether that be colour, creed, disability so I think education can only be a good thing.
These lessons will not “turn them gay” as some claim. They will give them an understanding into how people can feel different and how difficult that can be and how we can make it easier. Do we want to go back to the days where people were scared to “come out” or had to live a lie at great mental cost.
Our school is supposed to be all about inclusion. God loves us all. And if we’re all made in his image then how can any of us be wrong?
I think I’ve lost my way a bit here. Babies aren’t born with hate and prejudice. Why would you want to teach that but not love, acceptance and friendship? Isn’t the hope that people find love more important than who they find it with?
ps I know this is a really clumsy effort but I’ve had enough of seeing crap in the news about cures etc. I hope I’ve not offended anyone from LGBT community and I’m not comparing it with a disability, I’m using the frame of reference of facing prejudice to try to make a point
The little ones birthdays are a week apart. They’ve never had a birthday party with friends as Popples is too shy and never wanted one and Oliver doesn’t have many friends. They’ve both been to some parties and Oliver understands the rules to a degree and she has become less shy. She asked for a party and I talked through with her that people would sing to her, look at her and give her presents and she’d have to talk and say thank you. She said she could do it and she wouldn’t be shy because it was her party.
Ok then. Where’s appropriate for 5 and 7 year olds. We picked a soft play area I used to take them to as babies. When I went to book I asked about exits, as Olly is a runner. The woman was on the ball immediately on my mention of autism:-“do you need to change the menu? The doors are all button release up high. Do you want no music or it just turned down?” Filled with confidence I booked the VIP party with food and party bags provided. We didn’t need the stress of a that not knowing how either of them were going to be.
Invites were handed out. Popples picked her own guest list, Olly’s teacher helped me out with his guest list, cakes ordered and then we prepared them by countdown and talking about what to expect. There were a couple of no shows but there always is.
Olivers friends really know him. He got some very thoughtful gifts, drawings that were framed, pj mask stuff, fiddle scribble pencils and lots of other things. Popples got lots of art stuff, dolls so she was happy. We had said not to bother with gifts, a card would have been enough and the way Ollys friends have treated him and helped him is worth more to us than anything. And we know that people are struggling in these times. We just wanted the kids to have fun. People are very generous.
Party day-up early and out for a party starting at 10 am. She did me proud. Everyone was greeted, she played instead of sticking tonne like she usually does. Oliver’s friends obviously know him so well that they dumped his present then went to find him to say happy birthday. No way was he coming off the climbing equipment. At food time he sat nicely. Popples kept her eyes on the candle at singing time so she couldn’t see the stares, our coping strategy worked. He had a bite of sandwich then ran off to play. All the food was eaten, they played some more, she handed out party bags then it was home time. 2 hours raced by. Everyone seemed happy, Oliver hadn’t slapped his best friend despite being very excited – in fact he gave hugs as they were leaving.
We wrote our thank you cards that afternoon ready to give out on Monday. Then me and dad finally got a coffee and a sit down. We had prepared for every “what if” and were on high alert but it had gone smoothly. Better than we could have wished for. No tears, no clinging, only tiny bits of shyness, no slapping, no fall outs. It was worth every penny to see them so happy and with their friends. I think the joint party was best as Popples didn’t have sole attention on her and Oliver got his friends too. There’s a minimum amount for that type of party so it worked well.
I’m looking at an outdoor climbing and camp fire party for him next year, if we can get the danger element sorted. But that’s next year.
My children had a party. And it was a success.