Autism and The Boy – Four Years On

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It’s hard to believe that it’s almost four years since The Boy was diagnosed as autistic. The time has flown by and it’s been quite the journey so far..

The Boy’s problems were obvious from the age of two but the childcare ‘professionals’ where we lived were oblivious to the fact that he was still crawling LONG after all the children his age (and younger) had started to walk. His inability to cope with the slightest change and his meltdowns also gave them no cause for concern despite me voicing my concerns..

We moved from Cheshire to Lancashire just before his third birthday. We hadn’t had anywhere specific in mind except that it had to be commutable for OH’s work. We drove through many places but only one stood out and I still have the piece of paper where I treble underlined the name of the town with a side note. “HERE!”.

‘Here’ is an old Victorian mill town with bags of character nestled at the foot of the Pennines. It’s quaint but it rains a lot. Oh well, can’t have it all eh?

We’d only lived here for a few months when came time to look for nurseries. I looked at three in total, two of which were rated highly by Ofsted. They were clean and bright with new toys but they didn’t feel right to me. The third one was in need of a lick of paint and the toys were well loved but it felt right as soon as I walked in. The manager (L) was cradling a child on her lap and several others were hanging off her arms. All the children looked happy and I could tell that L was more about the children than the business. That sold it for me and he started that September.

Within two weeks, L took me to one side and said there was a problem. We’d made no mention of The Boy’s issues because we needed to see if they were picked up without our influence. She used the word ‘autism’ because she had experience with autistic children so she asked if we’d agree to the child psychiatrist seeing him. It was such a relief to know that it wasn’t just us being overly dramatic.

The child psychiatrist assessed him in the nursery over a few sessions and referred him for a multi disciplinary assessment in the local hospital. He was assessed over a twelve month period and by the time he started school a statement already was in place. He was diagnosed with Autism and Sensory Processing Disorder aged four.

We had a choice of three schools but only one had a good reputation with special needs. If there was ever any doubt that we’d chosen correctly it disappeared the day the headmaster lay down on the playground floor (in his suit) next to my son who was starting to go into meltdown. How many headteachers do you know who would do that?

Our journey of assessment to diagnosis was smooth though I know this isn’t the case for so many parents. The Boy was assigned a special teaching assistant who worked with him for 3 hours at first then all day when it became obvious that he required full support.

There have been occasions where we have been called to school either to calm him down or take him home. This is also at our request. When your child displays such severe challenging behaviour in a mainstream school the headteacher has to tread a fine line between meeting that child’s needs and maintaining the safety of the other children and the staff. The good thing is that none of these episodes have come and gone without a meeting taking place to see what can be improved on. The staff are always using new techniques and strategies to help him and anybody involved with him, including playtime staff, are educated about challenging behaviour and how to deal with it. We work as a team and the relationship between us and the school is brilliant and we know that he’s loved there.

The Boy has worked with his one to one for almost four years now and they have a special bond. Also, she totally puts up with his shit and does it with a smile. For him she a familiar face who not only guides him but comforts him. She knows him as we know him and she comes to see him during the long summer holiday so that he doesn’t go too long without seeing her. She doesn’t have to do that. It’s not part of her job but I know that The Boy isn’t just a job to her and so when I see him rush up to her and hug her as tightly as he does me, I know he is exactly where he is meant to be.

The other week we had to go in and calm him down as he’d trashed the classroom. There was toilet roll all over the place, upturned chairs and tables at funny angles and me laddo was refusing to come out of the toilet. When I went into him he was stood on the toilet seat growling which is always a bad sign when he becomes non verbal. The school have been told to contact us in these situations if he won’t respond to them because he will respond to us, me in particular. It took 45 minutes to get through to him but we got there in the end..

The difficult part of my son’s autism is that he often loses control and can become disruptive but they never give up on him.

The Boy has gone through a few different obsessions over the years..numbers, Lego, owls, Ninjago, Minecraft and his latest..Pokemon. Anybody who has autistic children (or is autistic themselves) will understand obsession and the need for it in order to cope with a world which overwhelms. The school understand this and accommodate his needs incorporating those obsessions into as much of his school work as is possible to get him to engage.

The Boy will be 8 this year. He is one of the youngest in his class  and the differences are becoming more and more marked as I knew the would. He’s always stood out but there is much that autistic children can get away with in those first few years of school that they can’t as they head towards puberty. Hormones turn children into little shits and autism doesn’t exclude children from said shittery. It’s just a different kind of shit.

Aside some blips and attitudes from a few narrow minded parents at school, he has been a happy little boy who enjoys life and certainly brightens up the lives of others. My late friend may not have fully understood his autism but she accepted and loved him for who he is. If only every parent at the school was like her life would be so much easier.

As he gets older I become more wary. Not of him. Never of him.. but how the world will perceive him. Perhaps this is because I was constantly on the receiving end of bullying as a child and teenager but the point is that I know how cruel children can be especially to those who are different from themselves. The thought I cling to is that a big difference between The Boy and myself is that more things go over his head whereas someone only has to look at me in a certain way and I feel as if I’ve been GBH’d. In fact, one of the MANY things that I love about him how he is happy to be himself and be unaffected by how people see him and long may that continue..

All in all it’s been a positive four years despite my concerns for the future. In a perfect world people would embrace him as the unique individual he is but the most important thing is that he doesn’t try to hide who he is in order to fit a mould that was never designed for him.

For anybody who differs from the ‘norm’ – this quote is for you.

I’m not weird, my reality is just different from yours.

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Spectrum Sunday
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8 thoughts on “Autism and The Boy – Four Years On

  1. A insightful blog about yours, your lads, the school and all involved in your lives Tracy, no easy walk in the park for any of you. But what’s good to hear is that you and your lad is heard and the system is trying to help you all grow to trust and believe that locally the education system is there to help you all. Each year things get tougher as lad grows along with his thoughts, worries, strengths etc but you certainly couldn’t have chosen a better area to start his educational life. Fingers crossed this continues to meet the needs of all concerned. You are fabulous parents with a fabulous child and your help will always help him meet his potential as he grows.
    Big loves
    😘❤xxx

    Liked by 1 person

  2. I can identify with this post so much! My son is approaching 7 and unfortunately, despite almost 2years of consultants and various observations, we do not have a statement in place yet. Reading your concerns about how people respond to your son and how he will find his place in the world is like reading my own thoughts. Thank you for making me realise I’m not alone in this!

    Liked by 1 person

  3. We were similar in that both boys were diagnosed without too much difficulty and had support but that doesn’t mean it’s all good all the time. Some days are harder than others and mostly it’s just misunderstandings. Like you I wonder how they will cope with a world that seems to be not built for them, but little by little we make some progress and they always fill me with hope. Thanks so much for linking this to #spectrumsunday

    Liked by 1 person

  4. I love the quote at the end. For us as parents to a child with special needs, we found that a specialist schol gave all the support we could’ve asked for, it was outside the home and school where we had difficulties with her behaviour, we found that we needed to explain potential situations in advance to make everyone aorund us (including family and friends) feel more comfortable then if she displayed behaviour outside the ‘norm’ no one would bat an eyelid as they got used to it her and trusted the way we managed things #SpectrumSunday

    Liked by 1 person

    • Thanks Suzanne, we’ve always said that as long as he’s happy, he can be in mainstream. Mainstream has worked so far and we can’t ask for better support. 🙂

      Like

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