Category Archives: The first signs

A parent’s advice about being different.

I planned to write about events in the past in the lead up to today, but every day brings new challenges. My son was chucked out of one school (after 11 days) at the beginning of this academic year, and tomorrow I’m anticipating a repeat scenario. Either he’ll have to leave at half term or they will refuse to take him for year 7 (I think that’s a given).

No point in worrying now…we’ll see what happens tomorrow…

Today I particularly wanted to share the amazingness of my son too.

It’s common to use the word normal and different in describing my amazing child.  I have used those words. In the first instance I thought them in my head about my child, then got quite offended when people said ‘will he ever be…normal?’ Over time, I’ve learnt to tolerate them but we all know there’s no normal out there. Sadly, it’s easier to bench mark children using these descriptions. Even Oliver uses these words about himself.

At age 7 ( year 3) Oliver had a sympathetic teacher who was very accommodating and constantly negotiated and renegotiated with him. She spent ages talking to him, nurturing him, and he felt secure and content in her class. Despite this Oliver still had his issues, kissing children in the playground, telling his peers they were wrong, struggling to understand imaginative work. Defacing homework, avoiding homework, losing homework. Oliver has successfully managed to do zero homework his whole school life (so far)…that is an impressive skill!

We didn’t pursue a diagnosis for Oliver. On a dress up day (that I had forgotten about) he was rigid with anxiety at all the strange different outfits people were wearing, and unable to go in to his class. I had already left and the SENCO saw him scared to enter the classroom, clearly stressed. She told me about her autistic brother and how Oliver was ‘typically autistic’ such is their nature. At the end of the meeting I said, ‘you do realise Oliver hasn’t got a diagnosis?’ ‘Oh, really? I didn’t realise that.’.  It was then we decided that if the school were treating our son as autistic we seriously needed to get a diagnosis.

Getting the diagnosis was surprisingly easy. The consultant had never before seen a teacher and parent get an identical score on the 3di. I love the way timings and numbers associated with Oliver seem to follow a pattern of preciseness. The nurse told Oliver to wait a minute whilst he called the consultant. Oliver started counting 1,2,3,…up to a minute. I was holding my breath. Please, please don’t be longer. I quickly said to Oliver, ‘it might be a little bit longer’…hoping he would allow for a little variation.

The consultant heard Oliver counting. This was good.  Oliver sat inappropriately close to the consultant (mainly because he wanted to see the computer screen), and Oliver was reading his report, enquiringly about what P and F meant. Perfect and Fantastic apparently. That pleased Oliver. It wasn’t long before he said yes he’s got Aspergers, gave us a sheet with ‘useful reading’ and ‘useful websites’. Bish, bash BOSH. Done. We walked out to the car park and suddenly we felt very emotional…but it was good. It was a relief, we had something tangible to work with and I felt empowered.

The next step was…do we tell him? I knew it would be easy to tell him when the time was right, I would just leave a book out, a page open, an article to read. Oliver picked up everything and read anything he could get his hands on. I discussed with his teacher that I would initiate this some time in the future to guide his curious mind towards understanding his diagnosis. But I needn’t have worried. By the following week, unprompted by me Oliver had diagnosed himself.

After reading this news paper article in First News Oliver went in to school and asked his teacher if he was ‘autistic’. She thoughtfully talked to him and they looked at some websites together about Autism and Aspergers. She didn’t realise I hadn’t instigated anything, so when at the end if the school day his class teacher spoke to me, it dawned on us he’d done it himself. Thank you First News!

Oliver and I talked some more at home. He was desperate for information and wanted to read all the books. If I could give any advice as a parent of an Autistic child to another parent. It would be: Please tell your child their diagnosis. The first thing Oliver said to me was ‘I knew I was different’. I was amazed that a child at age 7, recognised he was different. Shocking… goodness knows how confusing and damaging it would be to go in to teenage years or later life having always felt different.

So there we have it. Despite not wanting to use the word different…that is exactly how Oliver perceived himself. In such a brutally judgemental world,  Oliver found comfort in having an answer to why he felt different. It was without doubt the right thing to do. And he worked him it out for himself. I was, and am so proud of him.

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Did the world fall apart?

The short answer is ‘no’.

Really? I was upset, but not that my son might be autistic. No. I had conflicting emotions of sadness, but also hugely relieved.

Sadness because he was different. Relief, because I knew he was different. Ironic really. The acknowledgement from someone else gave me the reassurance I craved, as I felt like I was going slightly crazy. I had thought his problems were due to my parenting, and I couldn’t work out what I was doing wrong. His behaviour was conflicting and unpredictable, so I was baffled most of the time.

I decided I didn’t want Oliver to have a label. Ever. I had a label when I was younger, and it scarred me for life. I knew first hand what it was like to be ‘different’, and I hated it.

So we continued, onwards, in the knowledge Oliver was different, but not obviously so, we thought. Yes he had his paddies, that did go on for hours, yes he was completely draining of my energy, but it wasn’t anything major, he’s just ‘slightly autistic’, we said.

Oliver had a sister 2 years younger who absolutely idolised him. They used to play together nicely. I realise now, his sister had learnt how to behave; Oliver was in control. She was desperate for his attention so would do exactly what she was told, without question. They were very close and I was pleased they seemed to genuinely love each other. Next came a younger brother. It wasn’t quite planned, but a happy accident. Oliver and Tommy have a love hate relationship. Tommy physically recoils when he sees Oliver have a paddy, which is inevitably directed at me, and always comes to comfort me afterwards. He’s my cuddle monster. Tommy is very wary in Oliver’s presence, and he too has learnt to tread very carefully around his older brother.  His sister, bless her, used to stick up for herself, and always came off worse. She still does now, but with less conviction; the repercussions can be very painful.

I look back now and I can identify; eye contact (tick), some empathy (tick), he was very loving, and happy (tick, tick). But then he would flip, completely, entirely, unpredictably. I always said Oliver had a ‘Jekyll and Hyde’ character to anyone and everyone.

In January 2012 I read the PDA information on the NAS website … 4 years ago.

Yes…I was reading about my son; Dr Jekyll and Mr Hyde! It rang alarm bells then, but for some reason I dismissed it. Oliver didn’t do role play…he hated dressing up. Oliver didn’t have any language delay…he was reading children’s encyclopaedias at age 7. It wasn’t quite him, as we thought  he had Aspergers (because he was great at maths!). How could Oliver be both?

I read the article one day, and had forgotten it by the following week.

The long answer is the world didn’t fall apart, but our family life was hard or one could say ‘very challenging’. Everybody, even extended family, was effected in many different ways. We didn’t realise how this tornado at the epicentre of our family had pick us all up and we were defenceless to its power. We all revolved around one individual and we were beginning to realise this wasn’t normal.

It took a long time to accept our different world, was in fact our normal world. Even today.

 

Looking back

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Yesterday I realised it’s not me. It’s not my fault. But best of all, it’s not HIS fault.

My son is 11. 11years 2months and 9days old, to be precise, because he would like that. Oliver was a beautiful happy, contented child. Just adorable. He giggled and smiled all the time. I only have memories of a mouth of gums smiling back at me with his eyes locked on to mine. It filled with joy when people said ‘He’s only got eyes for his mother’.

He arrived on his due date. Very precise. He slept through by 3 months, though it was completely led by him. He started blinking, rubbing his ears, and then a yawn would indicate to me he was tired. By the time I was halfway up the stairs he had nestled in my shoulder sucking his fingers. Was I smug? I don’t think so, because it was all so new, I knew no different.

And that was my downfall…I didn’t know any different. He was my first, but although he was happy, slept brilliantly, interacted, he was VERY demanding. Maybe I look back and think that, but he never sat still. I was told ‘That’s because he’s a boy, of course’. Of course! Boys can be demanding, and I can certainly attribute the first 12-18 months to that, but by 2years I kept wondering why is this such hard work? Small things like shoes, and clothes were an issue. He wouldn’t wear certain clothes; jeans, wooden jumpers, any layers. He would rather not wear a coat at all. But that’s normal I was told, and I think that can be true. He would only eat breakfast out of the same bowl. A small plastic bowl with the ants around the edge and the shallow monkey spoon. He only stopped at 10 and half because we moved house, and we had new crockery for everything. I discretely slipped the faded plastic bowl, and spoon into the loft.

But the main problem was physically getting out of the door. Sometimes it was impossible, but I certainly wasn’t going to be dictated to by a toddler. By then I had another baby girl to look after. On one occasion my friends were having a picnic just the other side of my house, with their children playing happily together nearby. He refused point blank and would throw shoes, take off clothes, scream, cry. I really wanted to get out, see my friends, and I know he would enjoy it…maybe…eventually?

I did…I forced him out. Every time. It fills me with guilt now. I marched him out the door, shoes on or not, to play dates, preschool, car trips. I mean not every time, because he wasn’t like that every time. Sometimes he cooperated brilliantly but that was always a surprise and it would totally confuse me. What was different about today?

What got to me was everybody said his behaviour was normal and their son, daughter, baby did that. Yes, but I  wondered whether their child did all the tantrums together, ALL the time. The toast not cut in the right shape. Rectangles, not squares or triangles, The drink up to the line on the breaker. The same place at the table, same chair, same crockery, and nobody near his space. The same toy, and same t-shirt and trousers. I know, this doesn’t sound out of the ordinary, but he was very ‘ritualistic’ as my mother in law once put it. Then, in her next breath, ‘…his father was a bit like that’. Oh ok, and he’s turned out alright, so yeah, this is normal.

But did their children throw the shoes, throw the toast, cry, scream, jumping up and down in a fury that consumed his whole being. We called them ‘paddies’. Oliver was having a paddy. The same as a tantrum really, so quite normal.

By three and a half and at preschool, Oliver was obsessed with patterns, copied sentences from a poster on the wall, at a desk the other side of the room. He could do simple sums, he loved maths. Wow, what a clever boy. However, he did have his paddies. Somebody would interrupt his pattern, and take the hoop or spoil his pyramid of bricks. I joked with the preschool teacher…’ha ha…well, he’s probably a bit autistic!’. She didn’t joke when she looked me in the eye and said kindly, ‘well…actually…maybe it’s something you should think about, it occurred to me too’.

I don’t actually remember her exact words, but I remember her look, I remember where I was standing. I know there were people around me.

The bottom fell out of my world and I walked home crying my eyes out.

That was severn and a half years ago, and this is a diary of events that gripped our family.