School, school, stay away… an autism parent’s fears for starting school.

School. school stay away - an autism parents fears for starting school

In just under a year, you will go to school.

Three hundred and fifty-eight days.  Eight thousand, five hundred and ninety-two hours.

But right now you are huddled on my lap, legs horizontal across mine, head buried in my chest. I can see a drop of wetness glistening on your collarbone, catching the morning light.

You have just calmed, just relaxed in my arms.

This morning, everything was wrong – a huge effort, a mountain to climb. This morning, I don’t know where you were. When I asked you what you wanted for breakfast, you looked blankly. When I took you to the kitchen and pointed to the brightly coloured boxes, still, you could not speak. When I went through each option, asking yes or no, you began to get distressed.

But you need to leave with daddy soon and there will be no other food until lunch at nursery. And so I made you coco pops – a usual favourite – and sat you down to eat.

You screamed.

You screamed and screamed and sobbed and I could not understand what was wrong. There were snatches of speech… “Not good”… “Can’t eat”… “Please mummy”. But I could not make you explain. Offers of other food were ignored.

So went the morning, with every little thing, every detail of your life. Getting dressed, brushing your teeth – all was wrong, all seemed painful, all the end of the world.

And so I stopped and held you, little body shaking, perfect pale collarbone wet with tears, and waited until you could breathe again.

Yesterday was your second day back at nursery. Back to the usual, unusual routine. Back to coping with social interaction and sensory overload and trying to communicate with those who can’t always ‘get it’ as quickly as mummy or daddy do. Back to using up every ounce of energy, every scrap of resilience, every drop of effort just to….be… while you are there.

Back to using up all of your spoons. When you come home to us, this is the toll it has taken.

Biggest after a meltdown

In a few minutes you will have to stand up. I will wipe your tears and send you off with daddy. Because your nursery is a wonderful place – with orchards and forests to play in and people who care about you. Because you love it there and will grow and learn so much. Because you must learn to cope, even though it is so, so difficult – for you, for me.

But sweet boy my arms will ache for you all day. I will ache when I have to let you go, send you off when I know what it will cost, what it will do, to maintain that effort.

And in five hundred and fifteen thousand, five hundred and twenty minutes, I must send you to school. If a few days at nursery can steal you from me for so long, how on earth will you, will all of us, cope with school?

Stay away school. Let me pause time now so that you are not-quite-but-very-nearly-four forever – so that I am always able to help you, to support you, so that I do not have to give over so much of your care to strangers, to people who might not understand, to people who might make things harder for you, even as they try to help.

I want to hold you on my lap, little boy who is not quite yet four, and keep you calm forever.

But I cannot.

Because in three hundred and fifty eight days you must go to school. You will learn so much there, about the things you love, about yourself; I cannot deny you the world because I want to protect you from it.

Your nose is red and your cheeks are damp as daddy bundles you into the car.

And in just under a year, you will go to school.

School, School, stay autism parent's fears for starting school.

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21 thoughts on “School, school, stay away… an autism parent’s fears for starting school.

  1. Very interesting from a mums point of view … I work with autistic secondary school children out with mainstream education… spoon theory excellent read too

  2. Darling, it’s heart breaking I know. I’m afraid the worry never leaves. All you can do it be all that you already are for him, work with his settings and try and breath. Our boys now work better with the ore-school routine. David still often falls asleep on the way home or once on the sofa. Both he and Anthony need to spend quality chill time with iPads and video games. I tend to take things a bit at a time and only think of longer term when it’s got a point. Anthony is now in year 4. In two years we will need to name a secondary school. I am petrified, currently there isn’t one suitable – so I’m working on it. But not everyday – otherwise I’ll go nuts.

    Big hugs xxx

  3. Hello Danielle,

    You have shared an interesting post and I enjoyed lot reading this. Reading article was fantastic of Spoon theory and children with asc in school. Sending children to school is sometimes tough work but we have to do it. Since they are naughty they don’t want to go school leaving parents. Often they busy playing and running here and there that makes home environment full of shriek that sounds well for we all.

    I have two little brother and one sister and they live in hostel. I miss them so much. I was too didn’t like to go school and my mom used to ensnare me to send school.

    Thanks for sharing fantastic post.
    – Ravi.

  4. Thanks for writing this – I hadn’t heard about spoon theory – it’s a good concept to help understand why a child may run out of steam before the end of a school day unless their “spoon stock” can be repenished in a way that works for them. The primary school my son went to were really good at making small adjustments so that E could stay involved and attentive. I hope that your son will get all the help he needs from day 1. We did not attempt any after school activities until year 4 – for my son that simply would have been too much – after a day at school he was wiped out as far as social interaction was concerned. I was really worried about how my son would transition to high school but it went so much better than I had feared – I hope you have a similar experience next September. #spectrumsunday

  5. I was terrified when Joseph started school minus a statement and no firm plans of support. Not only had he had his security blanket whipped away from him but so had I. But he coped…and so did I 😉

    I always find it difficult to think ahead as you are thinking as things are at the moment and you can’t see how the child you have now will deal with different situations. I have to be reminded every now and again how far he has come and another 12 months he will have progressed even more.


  6. Such a heartbreaking post – I can understand your concerns because no-one knows how their children will cope with school, but even less when they’re autistic and have more to hit them when they change routines. I hope you find a school that gives him the chance to settle and get used to it in advance. And with teachers who have specialist experience in supporting autistic children. Pre-school is the first step and hopefully as he gets back used to it again, you might gain more comfort that school will work in the end.

  7. So beautifully written and it stirs up so many emotions for me from around 18 months ago. We agonised over mainstream or special school for EJ, but really we knew EJ wouldn’t cope with mainstream, nor it her. She LOVES school. It’s exhausting, but she loves it. I know we are very lucky in that. Hope you are too! x

  8. Thank you so much for sharing. My autistic son, a twin, now a teenager, could not speak until he was five. We had to home school him because he became confused and distraught and constantly wet himself when we tried to put him into mainstream school. The first time I tried to get him to use a pencil at the age of four – just to make a mark, any mark, on a piece of paper – he fell on the floor and screamed and screamed until I thought he would die. He needed language therapy just to learn how to use words. Now 14, he has gone back into school again after years of home schooling, and is enjoying it so far. He is articulate and loves drawing, and wants to be an artist. What I’m saying here is, you never know what the future will bring. Just keep loving and helping him as you are doing, and one day he may surprise you and make you proud of how well he has faced life’s challenges. Hugs.

  9. I feel your pain and believe me I know your fears. My autistic son is 15 now and entering adulthood. Don’t look ahead, don’t be scared for the future, just take each day as it comes right now and as you plan and choose the path & school, you will find amazing wonderful people who will help you. I remember the early years and the pain, so hold the boys close, cry your tears and just continue to love them. Don’t forget to find in that any joy and time for yourself. Thinking of you. Over the next few months I will be writing of some of my journey integrating my child to school, join my blog (though I’m sure you have no time!!) Best of luck. Sprinkles xx

    1. Thank you so much! That means a lot. I write a lot about autism in this style. If you click the category ‘autism’ you’ll be able to see them. Thanks for reading and commenting ☺

  10. This brought back so many memories of my own boy at that age. He is now 12 and getting ready for high school. His ability to cope with school has blown me away. It took it’s toll early on but he, and we, adapted to the new demands on all of us. Now I wish I could stop the clock and keep him 12 forever so he doesn’t have to move onto high school and move on from his caring teachers and beautiful school community. I don’t want to take a lottery with 6 different teachers and subjects each day. But he (and we!) coped the first time around. I know we can make this next transition a success too, with planning and preparation. Never underestimate our beautiful, wonderful kids. They will always surprise us. And while the road at first will more than likely be rocky and hard and uncomfortable, it will get better and you will all adapt and thrive. Even your precious boy x

  11. It is so hard when you see them struggling, especially when you know that there is a change coming and you don’t know what will come with that change.


  12. Letting go of our children is hard for all parents, but especially those of us who have children who are that little bit different. My daughter doesn’t have autism but she has other issues and nobody understands her cues as quickly or as thoroughly as I do. It’s so hard to trust this to somebody else. But my daughter is just starting her 2nd year at school and she is loving it. Enjoy your three hundred and fifty eight days together, and then run head-long at the school phase. You can do it if you support each other. x

  13. Stunning piece. You clearly pour every ounce of yourself into your beautiful boy… but you have spared a tiny drop for this post and I am glad you did. I can feel your love for him through your words. That is a special kind of writer. Sophie Xx

  14. Pingback: Good Reads #7 - The Less-Refined Mind

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