A Day In Mainstream School For My Autistic Daughter

I am so grateful that my daughter can talk and that she shares freely with me her worries and stresses of school. This day in the life has been written with her full consent and approval to help others see how challenging mainstream can be for some children with autism and how they can perhaps ‘hold it together’ all day but explode at home. 
img_2266Morning preparation 

I wake up and come downstairs and try not to think about school too much. I get my iPad or toys and set them up just how I like it. I know I need to get dressed and eat but until things are ‘right’ I can’t think about those things. I need to do one thing at a time so please leave me alone. Let me do it my way. Constantly asking me questions is so stressful as is nagging me about time. By the time we need to leave I am already stressed and anxious.

 
In the playground

I am scanning. This is so hard to see who I need to see when everyone is dressed the same and moving around. The noise, the unpredictable movements, the bags on the ground…that’s a lot to take in for me. I only want to find my best friend and the longer it takes to find her the more I get worried. What if she is off sick? What if she has an appointment today?

IMG_2395The bell

Bells panic me. They mean I have to move somewhere quickly and I sometimes get stressed. Bells mean pressure and children running and they might push me over. I stand in my line and face forwards making sure I don’t look at anyone. The teachers shout about not talking and standing straight but I am doing those already and not sure what I should be doing differently. I turn to see if everyone else is doing what I am doing and now my class is pulled up for me facing the wrong way! I feel to blame. I feel so anxious. I feel different. 

 
Getting to class

I have to remember to put my bag one place, my packed lunch somewhere else and then hang my coat on the right peg. It can be confusing to remember all that while others are talking and moving all around me and the lights are so bright inside. Sometimes I wait until most of the others are in the class but then I worry I will get shouted at for taking too long! Sometimes I forget I have my school bag as it is on my back and I can’t see it! How can everyone else do this so quickly and easily and I can’t?

Class

I listen so much. In fact I listen so hard to everything that sometimes I can’t do my work because I need to stop and listen to everything the teacher says in case she is talking to me. I want to write neat because I don’t want a row but then they say I need to work faster and I can’t do fast and neat. It is hard to concentrate with others so close to me. They move about and talk and turn pages and it is so distracting sometimes. The walls have so much stuff on them, I can hear the tap dripping and I can hear people walking about.

I am scared to talk in case I get in trouble.

Sometimes I just can’t do the work. Yesterday they wanted us to do a senses poem about fireworks. They told me to imagine being at a bonfire with fireworks but how can you do that if you have never been to a bonfire before? I haven’t. They told me to write about what I would touch but you are not allowed to touch fireworks so I can’t write anything. They told me to write what I can smell but all I can smell right now is disgusting school dinners and I can’t even spell that. I just leave that one too.

Then the teacher gets me in trouble for not doing the task. I want to cry. The tears won’t come out.



Playtime

I don’t understand this bit. You play with toys so why call it playtime when there are no toys? Just call it ‘talk time’ or ‘stand in the playground time’ instead. I take my own toys out. Then it rains and we have to come inside and I can’t play with my toys and it is so confusing for me. I don’t like changing things. I get cold at playtime because it is hard to fasten my coat and if I take my time the people tell me to hurry up and go outside so I just can’t fasten it up now. I have one area I like to stand and play with my one friend. We play the same game every day. We like it that way. I want to play with others but I can’t because I don’t understand what they are playing. They don’t have toys. I can’t work out made up games like that.

Lunchtime

Lunchtime is horrible. We have a short time for everyone in the whole school to eat and they want us all to line up and take turns and sit at huge tables with other children I don’t know. I just want to sit down and get time to eat and not have to hear chatter chatter and smell what everyone else has that I don’t like. It is far too noisy and busy and yet no-one will open my yoghurt or peel my banana. I feel lost and confused and just want out of there. 

P.E

I hate PE so much. I never know what we are going to do. Sometimes we do balls and sometimes running and sometimes sports. I hate it all. I know I can’t do it and people laugh. How can I catch a ball when there is so much else going on in the same hall at the same time? I can’t focus. I am so cold. My legs don’t like not having trousers on. My arms miss my cardigan so much. I once fell and hurt myself in PE so I don’t run now because running is dangerous plus they said at assembly to not run in school so I don’t run. Then they tell me to run and I want to ask ‘but you said not to run in school’ but my voice won’t work. I want to cry. The tears won’t come.

I do like school. I like learning and I like doing work. I like having a desk and I really want to be star of the week. I like the other children though I don’t know if they like me. I want to tell you about things that have bothered me like being told to work quicker or not eating. I am tired from it all and now I feel safe. I want to cry. This time the tears will come so please let them. 

img_2186
I am ok. I just need to let the day at school wash away so I can rest.

School can be hard but then everyday can sometimes be hard when you have autism like me. 

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110 thoughts on “A Day In Mainstream School For My Autistic Daughter

  1. Why make your daughter suffer through the stress and anxiety of mainstream school everyday rather than have her learn in a more positive environment tailored to her such as a base or support school?

    Liked by 1 person

    • Because there is no other school,suitable for her and so many if these issues like the bell and PE would still have to happen in a base anyway.
      Her school are brilliant and have already put more support in now they are aware of these issues but she needed to tell us before we could help her.

      Liked by 1 person

    • You do realise there are more children like this than there are specialised places for them? I’ve had it both ways with my children, and it is not as easy as your comment assumes.

      Liked by 1 person

  2. Your daughter is brave and sweet but I’m going to agree with other posters in that I don’t think the level of stress she’s dealing with on a daily basis is doing much good.
    There are options, you have to push and be ruthless to get her the support she needs. I would look to other schools or home education. At the end of the day what schools say and what they do are two very different things. She looks worn out in those pictures and understandably so, I would consider your options carefully. I see a tired little girl who is most likely sick of suffering through days like that. As a mother to a child with additional needs I know how hard it is but you have to really think on is this, once that gap widens with her classmates in a couple of years then you’ll get added stress. I speak from experience and I hope this doesn’t come off as pushy but please consider things now,and have a plan ready to save yourself and your daughter from untold stress and heartache. I say it over and over again – do not buy all that the schools tell you. Mainstream schools don’t do enough, it’s impossible for them to focus on so many children let alone those with ads, ADHD etc. I wish your daughter all the best.

    Liked by 1 person

    • I volunteer in her school so know that more help has been put in place. All professionals working with my family are aware of what she has written and doing all they can to support her. There are no other suitable placements and academically she is doing great so inclusion is what my authority does. They proportion of children like her in mainstream is increasing daily so I feel it is about helping her and working with her school to improve her current placement before any extreme measures regarding moving her are considered.
      Her school need a chance to fix what they never knew was broken until she told them and I am working with them to do this. She also has an eating disorder (as previous blogs will fill you in on) so often looks worn out and ill sadly.
      Thank you for reading and commenting

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  3. My daughter is now 15. Your daughter’s experience reminds me so much of hers. Daughter still comes home and unloads her feelings about teacher’s telling off her or her classmates. I didn’t know it was autism until she was diagnosed at 8.5. She had a breakdown at 10.5 years. She went to a Special school at 11.5. It has been a bit easier at the Special school, but there are still times that, I feel, some teachers/LSAs don’t understand autism. You are fantastic for working at her school and helping the school adapt to her needs.

    Liked by 2 people

  4. What a brave little 8yr old girl and written with such articulation and honesty… It reduces me to tears reading it as it sounds familiar to our family…. Thank you for highlighting what it is like in the eyes of a child with autism in school as we adults and parents might not truely understand what a challenge it is on a day to day basis for you… Well done.

    Liked by 2 people

  5. Well done, autism makes the world so difficult to live in.my son diagnosed at 23 had weathered exactly what was described all his childhood but never could explain until he went to college .just one too many changes and some maturity helped release the difficulties of a life time. But no one worked it out till I presented a dosier of his experiences during his growing up which he helped me to compile. Diagnosis brings relief when at last you know what the individual with it and the family are dealing with. Diagnosis is paramount and clear support is necessary. Good luck to all who deal with this condition daily .

    Liked by 1 person

  6. That is so raw and honest. But I feel so sad for your daughter that the school is not supporting her in small ways which would make it easier for her. Little things like allowing her to get her bag on its peg and everything sorted before or after the other students to avoid the mele. A kind face to check if she needs help with her coat, a space to play with her friend where she feels comfortable. An aide to make sure her yoghurt is opened and banana peeled. Schools cannot change the overall fact they are loud busy places, but the right ones find ways to make the daily experiences less jarring.

    Liked by 2 people

  7. Her story is so sad and so typical, it’s so close to my Son’s experiences in mainstream school, eventually he had to leave as the pressure took it’s toll. I hope that this circulates around her school. It’s these kind of testimonies that can help to change things. From my perspective I can only describe her experiences at school as abusive, she needs protection as well as understanding and acceptance.

    Liked by 1 person

  8. This could have been written by my daughter. She has struggled in mainstream. Since going to secondary school things have deteriorated – she started to hurt herself, stopped eating. There’s a unit for autistic children attached to her school, we would like her to go there but school says they have to prove that what they’re doing hasn’t worked before they can ‘go to panel’ (whatever that means). Which part of my 12 year old saying she wants to die shows that mainstream is working? She’s not been in school for a month now. I’ve asked them to send work home. They haven’t. I’ve asked about home tuition temporarily on medical grounds ( backed up by our GP). Again this is a ‘ panel decision’ they say. She wants to learn, to go on to University. She is not being allowed. I’ve contacted SNAP, my MP, Assembly Members. Nobody is listening.

    Liked by 1 person

  9. This could have been written by my nearly 8yr old girl, so many similarities. She comes home and rips off her toenails some days when it’s all been just too much
    I worry about secondary school so much, her school at the moment are really on top of most of it and really support her as much as they can
    PE days are by far the worst!
    Big hugs to your little girl x

    Liked by 1 person

  10. Will you thank your daughter for sharing her story with us. My boys are both verbal but sometimes they find it hard to explain how it feels in school. Your story reminds me to try again to give them the words to be able to explain so that we can help them as best as we can.

    Liked by 1 person

  11. Thank you so much for sharing this – so like my dd, who attempted two primary schools, a year of home ed, then two disastrous years at secondary before we pushed for assessments, got diagnosed, now pending specialist ASC independent school. Secondary school brings many more challenges with it, and I say to all parents of primary school children who already know their child’s needs are like this, to apply for a statement/ EHCP depending on where you are) now, even if you are happy with what the primary school is doing. These assessments/ legal docs can take a while to achieve, and if they go to secondary, only that sort of documented need and provision will be taken into account and resourced. It is very common for young people to be allowed to ‘fail’ for two years at secondary school before any action is taken – sadly the only people who will see, and commit to consistent and thorough identifying and meeting of a child’s holistic needs are the parents, and if the education isn’t right, that has damaging consequences for the child. My other dd survived mainstream undiagnosed, albeit with big anxiety issues, which led to her ASC diagnosis after transition to sixth form was too much change and challenge for her. It was the best place for her, although with different, more SEN – friendly policies, it could have been much less stressful.

    Liked by 1 person

  12. Home educate her, alot less stressful & she will most likely like alot of home educating autistic children learn more than they would at a special needs or main stream school. The school system fails alot more children than it helps.

    Liked by 1 person

    • Socially home education would not work as she would isolate herself and never leave the house. There are a lot of positives to mainstream and more support has been put in place since this was written. I am a qualified teacher so could easily home educate if I felt it was right for her.

      Like

  13. What a strong little girl to be able to share her feelings and fears. I hope all the positive responses and changes she has seen being made, through her sharing, will encourage her to do so more easily. God bless her and your family.

    Liked by 1 person

  14. Well done to you both for expressing everything so clearly. Your daughter is clearly a very clever young lady – I hope she has all the support needed to fulfill her potential, to carry on enjoying learning and to make the most of her unique talents. I love that she has a friend to meet with and play the same game each day – you don’t need lots of friends & they must mean the world to each other at school. I hope the yoghurt, banana and coat situations are all being dealt with now and most of all that your article will help others to implement the often small changes that can make school a more comfortable place for children on the autistic spectrum of all ages and abilities. It’s amazing what a difference even small positive changes, consistently done, can make to a child’s day.

    Liked by 1 person

  15. Your daughter is so articulate. Her story made me sad for her going through that but more sad for the kids that can’t communicate so eloquently, like my son, and won’t have their needs met 😦

    Still, it gives me some ideas about what may be stressful for him at school and what may be better.

    I read in the comments that the school made some changes for her. Could you describe those? Did you change her IEP with new accommodations or did the school just offer accommodations willingly?

    Liked by 1 person

    • After reading her pice the school I immediately put changes in that have been set now and continue on. Some of these include me walking her right to line at first bell, extra time in cloakroom with a buddy to support her, going to the first sitting for lunch with the younger children as there are less children and less noise, she is allowed to sit out anything in PE that distresses her and can wear a long sleeved top instead of a t-shirt and joggers if she wishes. I can not fault her School who went above and beyond once they were made aware of the struggles she faced daily,

      Liked by 1 person

  16. Thank you so much for sharing this. I am a Senco (special needs coordinator) in a mainstream school. Many children with ASD are high achieving and can access the curriculum in a mainstream school, so why should they be excluded from that? It’s up to us to make mainstream inclusive for children like your daughter, by making small adjustments and educating others she can be successful and happy with her peers instead of being segregated. But we can only do it if we know! When I go into school tomorrow, I will look at things with a different perspective. By looking at School life through your daughter’s eyes, hopefully I will be able to make each day a little more enjoyable and manageable for our children with ASD. So thank you again and please thank your daughter too for sharing her story. You must be very proud 😊

    Liked by 2 people

  17. such a brave girl my grandson suffers exactly as she does hates going to school and everyday is a struggle for my daughter ,his school try but he and his mum have recently been let down by the people that should be helping them.i hope things improve for her and yourself thinking of you both with a big hug for you both xx

    Liked by 1 person

  18. A few thoughts that may or may not help as everyone with ASD tends to have slightly different patterns they run through.

    Mornings try waking up 5-10 minutes earlier to reduce how rushed the process feels. If she feels like she can only get up at a set time you could also move the clocks forward (tonight’s the best time.) For me it was always the opposite, I’d be ready to go waiting and that made me irritable. So I got up later.

    For the playground arrange a place they can meet so there’s less worry about finding each other. If someone’s not there the stress will end the same or maybe you can have best friends mum text you if she’s away so you can prep her for that happening.

    The bell is tricky as it can contribute to sensory overload, I think trying to get the perception changed will help. Changing from you need to rush somewhere to just needing to go somewhere. If planned correctly there should be enough time from the bell to walk to where you need to be.

    Turn getting to class into the same thing as the current morning routine, just like the toys have their correct place so does her bag, coat and lunch box. As for the noise are there some type of ear muffler she could wear to reduce the volume when in the corridors, I used to have some disconnected headphones which acted like ear plugs which I’d hide with my hands when in my ears..

    Class there are some similar things here like the headphones when things get too loud. I would always be sat at the corner of a table, this meant only 1 person was next to me and it was easy to look around the room (have to know where everyone is) I know schools don’t tend to have the same layouts now so might not be easy to do. The biggest thing that sticks out to me is the being afraid to talk, on this the teacher can help by using a traffic light system for the class. Green – talk freely (not shout) Yellow – Quiet talk only Red – Silence. They may already have something similar if so then make sure she understands it. The last part is something that rings lots of bells how can you imagine being something you’ve never seen? I still struggle at that now. What’s it feel like to be a bonfire? My response would have probably been ‘hot’.

    Breaks in primary I spent watching other children looking at behaviours and didn’t really have a proper school friend until I dragged someone away that was getting upset and picked on as it didn’t sit well with me. We became really good friends after he calmed down. In secondary it changes from play to talking and I tended to be in the library where other like minded people tended to go so it might actually be easier for her then.

    Lunch is mainly noise again so ear defenders or similar. As for the banana try teaching her the way monkeys open them. Pinch the bottom and it’ll split this can work better than pulling the stalk especially when it’s still slightly green.

    PE I think is summed up in the fist sentence, it’s always changing. My PE was predictable I knew what activity we would end up doing and what I would do, when the weather was good it was rounders and if cold/bad in the hall with the PE apparatus. Now it changes regularly so you sample more. Maybe the teacher could give you a heads up as to what activities to expect so you can prepare her. (Especially since you said you are in the school)

    I hadn’t intended on writing this much but I’m going to leave it, In case it’s not clear I’m relating my experience as an ASD adult to what she’s going though to try and give possible solutions. Some might help others won’t as all of us are different some may already be in place. The other reason I decided to write this is it’s important your daughter knows that with what she feels and comes across she is not alone.

    Liked by 1 person

  19. Anyone saying this mother should put her daughter somewhere else where it is easier for her to adjust, there simply is no place, or the cost is so much, it is not affordable. My daughter of 16 is autistic. She wasn’t diagnosed until three years ago. Since that time I have tried everything in my power to get the Department of Education to place her at a school more suited to her needs. They make other “accommodations” at her high school, time and time again. It still does not work and they just keep making changes instead of paying for her education in a better environment. I am unable to afford the $14,000 per year it would cost. This is all very difficult and confusing for her as she never has the stability and routine she desperately needs.

    Medical insurance doesn’t see autism as a disease or illness. They view it as “un-treatable” so therefore have very little assistance. There is limited coverage for such things as schools and even therapy. They must have other emotional issues in order for most insurances to pay for these things.

    Then, I regret all the times before her diagnosis that she was punished for her behaviors rather than accepted as she was. She missed nearly every recess during grade school as she was forever being punished for something. Maybe she got up from reading, walked around the class and started talking to someone. Maybe she refused to hold the hand of an older student who was mentoring her. Maybe she pushed someone who talked mean to her. The list goes on and on. Had we know then, we could have started to “make accommodations” sooner instead of her missing her entire childhood of recesses.
    Like this woman, we do the best we can to understand the feelings and fears of our daughters. We do the best we can to get them the education they deserve, We do the best we can to give them a “normal” life. But in response to all this, with a 16 year old autistic, she tells me there is no “normal”, there is no “I understand” to be said, because we don’t. We can simply keep loving them and do the best we can to make sure our child knows we love them just as they are. In fact, my daughter is remarkable. I suffer for her sufferings even though I don’t always understand. I am also happy that she can speak and try to describe her life as this woman’s daughter has.

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  20. This is so famillier , I have a visual impairment and school was often a sensory overload i would come home and have a melt down over homework that wasnt addapted propperly, or because teachers wouldnt or couldnt addapt their lessons. Just out if interest what addaptations/ reasonable adjustments – if any – have the school made ? So much if this could be really easily avoided if the school were just a little more leinient , if you get your county council SEN specialist involved things tend to change quite quickly

    Liked by 1 person

    • In fairness after reading this her school acted immediately. She now has lunch with her best friend in an earlier, quieter sitting. Her and her friend meet up at the same place and her friends mum will text if anything has changed. The staff are more aware of her literal thinking so explain things better and her seat has been moved away from noisier children. Each thing is so small but together they have changed things so much. Oh and in PE she can wear jogging trousers and a long sleeved t-shirt if cold and can sit out anything too hard or watch before joining in. Th y really have went out of their way without even needing any legal documents. The issue was they didn’t know until she said.

      Like

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