Today is Sports Relief, which means the boy had a non uniform day at school.
Normally this isn't a problem but currently the boy has an obsession with being very smart and wearing certain clothes. Hubby is at a loss because he quite clearly doesn't take after his 'fashion sense' (and I use that expression loosely).
Of course todays theme meant you had to wear sports gear, football strip, trainers, tracky bottoms that kind of thing. This isn't in keeping with the boys current garb. For his birthday he wanted a tuxedo suit complete with waistcoat and bow tie from myself and hubby. Seriously.
This morning I made the rookie mistake of completely underestimating how much you have to prepare an autistic child for any kind of change in their week.
Even though I'd said he didn't have to wear uniform on Friday I hadn't specified the boundaries of what he had to wear. This morning the boy was determined to wear a smart white shirt and black jeans. It took a lot of persuasion, tears and will power to talk him into black joggers, a white T-Shirt and a hoodie.
'I just want to be like the headmaster and wear a suit.' he bemoaned.
'But it's Sport's Relief darling. Everyone will be in sporty stuff, including the headmaster.' I said hopefully with my fingers crossed behind my back.
The major stumbling block was the jeans. I know it was a non uniform day but I thought jeans was pushing the 'sports clothes' brief that bit too far, so I'd picked out joggers but it was a battle I can tell you.
When hubby arrived at school with the boy the headmaster was indeed in casual attire, no suit, just a t-shirt and... wait for it... black jeans.
Luckily the boy didn't seem to pick up on this and a crisis was averted.
It just goes to show even if you think you've done something loads of times before and it'll be ok, you can't assume it will be.
Preparation is the key... that and checking in advance what the headmaster will be wearing.....
So here's the thing. I haven't blogged properly for a long time because although there's been loads to talk about I haven't known exactly how to say it.
So I just need to plunge in and say it.
The boy has been diagnosed with high functioning autism. High functioning means he's the lower end of the autistic spectrum and more able to function in everyday society. It's sometimes called Aspergers - but to be honest when I read about Aspergers I don't recognise a lot of the characteristics in the boy at all - and apparently the modern day thinking is to use the term 'high functioning' anyway as that's more positive.
So there you go.
Even though we were kind of expecting it after all the appointments, observations, reports and analysis it still came as a bit of a shock to hear someone say it out loud.
It felt a bit final, even though this is an initial diagnosis and there's more tests going on, but to be honest with you I don't expect it to change greatly.
Part of me was relieved to be getting somewhere at last and part of me was heart broken that it wasn't all a massive mistake and they'd got it wrong.
Several weeks have now passed since we saw the paediatrician and life has settled into a normal pattern again. The boy is still the boy. He hasn't changed. His world is still as it always was and we're very keen to keep as much stability and normality in his life as possible. The school are being brilliant and so supportive. We have an additional homework schedule in place to assist with his phonics, letters, numbers and handwriting and as a result they are all improving.
Which begs the question is it just that the boy can't be arsed but when he does turn it on it's all there?
I'm not denying he's 'quirky' and doesn't fit the boxes and he does display some autistic traits but there's always this feeling in my heart that sometimes, just sometimes, he's playing us all.
Time will tell I guess, but after the initial shock, the 'why us?' and upset I've actually cried less and felt more positive since the diagnosis. We're no longer in 'limbo' waiting for something to happen and feeling lost somewhere in the system.
Don't get me wrong there are days when I look at the big blue box file I keep all the reports and observation notes and appointment details documented in and I want to take the bastard thing outside and burn it. But on the whole things are good.
The boy is as funny as ever. His manners are beautiful. He's caring, getting more sociable each time I see him with school friends, he has the growing maturity to deal with his rages and think about making the 'right choices' as they say at school. I see progression as a person, academically (when he can be bothered) and socially every day. He's my pride and joy, he's my life, my love and we all adore him.
We're very lucky and things are ok.
On several occasions we've been told 'the trouble is he doesn't live in the real world', to which I've replied 'who the hell wants to live in the real world? I'd rather live in his world thanks' - and drawn worried looks from doctors, therapists, SEN co-ordinators and health professionals.
But you know what, the boys world is safe, warm, full of love and support. And I for one am more than happy to live in it with him.
Well, after the 'little victories' of parents evening the other day, the roller coaster of parenting took a dip today.
I've just come off the phone with our health visitor. He's a nice enough chap and mostly very helpful, but on this call I couldn't help feeling that I'd... well... to coin a Nanny P expression... pissed on his matches.
He's got it in his head that the boy is autistic. He's observed him once. Don't get me started on that one. Hubby and I were sent a questionnaire asking all sorts of things about his behaviour and social interaction at home. We filled it in very honestly and sent it off.
This questionnaire, along with the health visitors report, observations from the school and the report from the speech and language therapist, (who came and saw the the boy three times, but whom I've never met and who's report I've never even seen), are all to be sent off to a paediatrician for a formal assessment.
Trouble is now we've messed with his system, because the boys score for autism has come back low based on our answers.
"The thing is he doesn't seem to behave at home as he does in school' came the glum sounding voice over the phone.
Well no shit Sherlock. Sorry to piss on your parade matey but that's how it is. Show me a child that does behave the same at school, as they do with their mum and dad. You're never the same with your mates as you are in front of your parents. Neither should you be.
'Well we'll send it off anyway but if they send it back then we'll have to explore other avenues.' he said sounding very annoyed that his theory was falling apart.
'It could be ADD. But that's a different department you see.'
Is it. Is it really. Does that stop us trying them next then? Or can paperwork not be sent off twice?
Vintage Songtress has always said there's an element of box ticking about all this, and if there has ever been a box ticking exercise going on, it has been highlighted with todays call.
Well fuck your boxes and fuck your parameters. If we have to ask a million people for help and advice rather than opinions and half baked theories, then I will keep asking so my child can learn at his pace and to his abilities.
The boy is not a problem to be solved or a case to be closed and brushed under the carpet because 'If it's too hard I can't understand it.'. He's a child, a human being, and once you get to know him you can understand him perfectly well thank you.
We talked about the physical excursion he needs everyday to tire himself out, and how he can concentrate better when he's got it all out of his system, so I tried to finish the conversation on a positive note.
'It's sports day later. He may not join in with all the events but at least it will wear him out.' I said
'Oh dear,' came the morose reply 'Well try and enjoy it anyway.'
Oh I will sunshine. Believe me I will.
Jingles was cancelled yesterday due to a lack of hall to hold it in, so we went to a local indoor play centre for the morning instead. We met up with three of the NCT ladies and their boys, plus when I arrived I spotted another friend with her little girl too.
Happy Days!
Or so I thought!
The boy is often better playing on a one to one basis. I know that. But it does him good to mix in bigger groups and he does do well at Jingles and at gym club so I wasn't unduly worried.
He took a little while to get used to the cavernous warehouse that is Play-2-Day and seemed slightly overwhelmed. He's been there before but ages ago so I thought this might happen. It happened last time. He takes time to adjust to some new surroundings, especially big noisy rooms. Well he doesn't go to nursery yet so I can see why.
He played. He ran around. He went off on his own and then he'd check where I was. He laughed at peek a boo with me in the Little Tikes play house. He ran headlong into a little girl and they both cried. He melted down at toys that didn't quite do what he wanted them to. He obsessed about the big fire engine and police car in the area for older children. He wasn't sure if he liked the ball pit or not! He had a drink and two lots of snacks. He wouldn't sit still for long. He took himself off on his own and sat in the Peppa Pig ride several times!
He was generally, the boy!
Maybe I'm just used to him but I didn't think anything of it.
We'd been there about an hour and a half when a lady I didn't know approached me.
"I hope you don't mind me asking but is your little boy autistic?" she said
"No!" I replied. I was completely gob smacked!
"It's just that my son is eight and has just been diagnosed with autism and I recognise some of the early signs in your little boy"
For all my confidence coaching and new found self assurance I completed crumbled. Tears welled up in my eyes and when asked if I minded her bringing it up I said no it was fine.
Of course it wasn't fine. She was a complete stranger and it was bloody rude to be brutally honest but I didn't say a word.
And it was this that annoyed me about the situation the most. My complete inability to assert myself!
She went on to talk about her children, one has ADHD the other autism and she had two others as well! She said she'd been watching my boy for a while and he seemed stressed in social situations and switched quickly from perfectly happy to a complete tantrum.
Well love you want to keep an eye on your own kids and stop watching mine thank you very much.
Did I say that? Did I hell. I think I said something weak and non committal like "I see".
I was crestfallen. You see I don't believe the boy is autistic. And believe me I was up at 4 am this morning, unable to sleep researching it on the internet! I think he's a toddler who is full of energy and personality. However, much like hubby and myself when we were little, he likes to take himself out of crowds and have his own space, particularly when he's not familiar with the setting.
The reason I was so upset, apart from not speaking my mind, was that I felt like the worst mother in the world. Was my boy so badly behaved that a complete stranger mistook his personality for autism?
Don't get me wrong, if he is autistic, and I will go and speak to a health visitor now I'm so shaken up by it all, I won't be ashamed. It's nothing to be ashamed of. I'll be scared out of my mind. I'll feel anger and resent and lots of selfish emotions like how the hell will I cope. I'll feel terrible that the boy may not fulfil his full potential. But I would never be ashamed.
I'm just angry at myself for not asserting myself more.
The woman carried on even though I had turned away, partly to try and compose myself and partly to just get away from her.
"The doctors said the reason my son was late walking and talking was because he has two older sisters and they did everything for him" she carried on.
Hubby has three older sisters. He was very late talking. He didn't speak until he was three and had to go and see a speech therapist when he was a school so I completely got what she was saying.
But the boy wasn't late walking and certainly not talking. Given Hubby's problems with speech as a toddler we've been really pleased with how the boy's language is progressing.
Then it suddenly occurred to me! The boy is tall. Very tall. Hubby is 6 foot 4 inches so he was always going to be.
"Well my son wasn't late doing either" I said much more assertively. "He's only 20 months old you know. He's like any other little one who is nearly two. He has tantrums".
"Oh. He looks a lot older. My little girl is two and quarter and he's far more advanced than her" she back peddled.
Well, if his speech is more advanced than your two year old he's hardly bloody autistic then is he!
But again I didn't say it.
She sloped away without another word and shortly afterwards left.
I told the girls what had happened. They were, as always the amazing support network they always are but I was upset, troubled and frankly pissed off.
We decided three things:
1) Due to his height the boy looks about 2 and a half. I may well be plagued with misunderstandings for as long as he seems about a year older than he actually is!
2) I have a neon sign on my head that says "Bring your troubles to me. I'm a nice person. I'm as soft as lights and I'll take your problems on for you".
3) Some people try and make themselves feel better by offloading their woes onto others.
And I think that was what it was. Her son had just been diagnosed with autism and she was searching for a kindred spirit. Another lost soul. Maybe I just give off vulnerable "I don't know what the hell I'm doing come and make me feel worse about it" vibes!
One of my fellow blogger Crystal Jigsaw has an autistic daughter and writes an honest, moving and very funny blog about the daily life of bringing up an autistic child.
www.crystaljigsaw.blogspot.com
She is inspiring, almost always cheerful and constantly proud and amazed at her beautiful daughter and they way she looks at life.
Maybe I should've told this lady about Crystal? Because she certainly wouldn't have minced her words!
