Whats it like living with a child with ASD? Pt 2

posted in: Autism | 1

Now that we’ve fed, watered and taken our child with Autism out of the house so we can have our parenting skills assessed by random members of the public, how about we try to put them to bed or better still, get them an education?

Do you like sleep? Like a lie in?

Forget it.

Sleep is for the weak and as you have now gathered, the parent of a child with Autism, is anything but weak. We have a hide any self respecting Rhino would be proud of, coupled with the attitude of a mama sabre toothed tiger with naughty cubs and a really bad toothache.

Anyway, sleep. How we do look forward to bedtime. Especially on those days where everything is wrong. Not that you know what is wrong specifically, you just know something is very badly wrong as your normal lovely child is struggling and lashing out at everyone. Everything is so wrong and so overwhelming, they can’t even tell you what it is thats wrong. Do not try and guess, the constant questions will make things worse. Refrain from checking your child over for any new growth of horns or tails. You will find out eventually and you will fix it, because that’s what you do. Sometimes it just takes a while. Sometimes you can’t fix it and that will break your heart. But you’ll find a way to help your child through it, so they understand and cope with it better. And that’s ok.

Anyway, think of nice calm bath times, followed by a bedtime story and then beautiful sleep. Just like the adverts and the parenting books.

Then think again.

We have the fighting in the bath, the “what happens if I hold my brother’s head under the water”, the arguing over the bedtime story, the questioning every detail in the bedtime story and the bouncing on the bed. If by some chance you can actually get them in the bed, they will then choose this moment to tell you that they’re not tired and won’t be going to sleep. Ever. Again. Go check you put the cider in the fridge.

You will then spend the next 2 hours trying to persuade both children to stay in their beds and to go to sleep. Most of the time you will go to sleep before they do. It helps if you have a partner in crime and can divide and conquer. It does not help if they fall asleep while putting one child to bed leaving you with 2 wide awake children and one snoring one….

Sunday Morning Lie in? Nope. 6.30am each and every morning. Come rain or shine, summer or winter. That’s assuming they stayed the whole night in bed anyway. Sometimes they wake every 2 hours, sometimes they crawl in bed with you. Apparently, a child with ASD sleeps best with the top half of their body stretched out on top of their mother, and their legs across their father’s head.

So, now we’re all well rested, lets talk about school.

Now this is hard, as it all depends on which school we’re talking about. Our current school is a delight, both boys go into school relatively happy (apart from the expression of a condemned man), they learn, get the right support and any problems are dealt with half the time, before I even know about them. This does not happen in every school. In fact, this is so rare, some people wouldn’t even believe it can actually happen like that at all.

On the other hand, you will be physically dragging your child into school each and every morning. There will be tears, from both of you. From 6.30am you will have heard wide and varied reasons why they will NOT be going to school today. You and your family become the playground entertainment. A million eyes appear to be watching to see what will happen today. Assuming you manage to get said child into school, and manage to leave again, don’t get too comfy on that sofa with that cup of tea – you’ll be called back in soon enough.

Don’t go thinking you can have a job or time to yourself or anything, you already have a job – attending meetings. With teachers, headmasters, doctors, paediatricians, therapists, educational psychologists…. so many people you can’t actually remember who they are, much less what their job title is.

When you think about it, school must be torture for most children with Autism. It’s bright, its loud and full of people. There are social rules and boundaries that you don’t understand and the other children, they don’t understand you either. You’re supposed to play with these people, but you’re not really sure how to go about that. All day, every day, you’re expected to learn and do work in the same way as everyone else. Except that many children with Autism are visual learners, but still, most schools still expect to eventually force the square peg into the round hole. Even if they have to break the corners off to make it happen.

Yes, I have heard the phrase “Why can’t he be just like all the others?”

You have the phone numbers and email addresses for the school, the head, the Governors, the Education Authority, the Special Educational support teams, the Educational Psychologist, Ofsted and your local MP in your address book, and you’re not afraid to use them. You will become the archetypal parent from hell, you will see the fear in the teachers eyes when you request yet another meeting. You will not care. Until they start meeting your child’s needs, you will do anything and everything that is required to get your child the support they deserve.

Then you’ll move to a nicer school and yet still you’ll be angry. Because not all schools are nice to children with special needs and they really should be.

After all the battles, and meetings and the responding to ill advised comments, you’ll let your tough hide armour slip a little. It’s in those little moments when you wonder what you did to deserve this, what your child could possibly have done to deserve to be the only one in their class not to be invited to a birthday party, and you wonder at the amount of prejudice in the world. You marvel at how anyone could be prejudiced against a child for something that is totally out of their control, and you’ll open a cider.

You’ll get to like cider. A lot.

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Coming soon – Part 3 – Holidays

 

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One Response

  1. The school thing was why I home educated my son. So much stress went out of the window when I removed him from school for both him and me

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