Sunglasses and Batman

Bit of a mixed bag week, lots of repetition! Hearing the words "Where are the Wottingers?" 50 times in the space of 5 minutes is pretty brain melting, especially when there are no signs of a Wottinger anywhere in the 10 mile radius, but he's talking and that's pretty amazing stuff considering I didn't think he would speak. 

As I type William is in my bed mooching about and talking to himself, saying phrases that he's learned relating to bed - "sleepy", "go sleep", "blankies" , "tired". So he can relate some speech to situations, but it takes a fair bit of repeating to him before he remembers it. He doesn't do social chat, he only says what he wants to and when he wants to, but that's very hit and miss and often he can't respond to you when you need it. Or maybe he just doesn't want to! He might be sick of me banging on about stuff. I'm kinda hoping that one day he might be able to read this and say "you know mum, I understood everything, I just didn't wanna answer cos you were doing my head in". 

In the shop the other day a gentleman commented on his Batman hat, saying to William that he was a bit small to be Batman. William didn't even notice the guy was talking to him so we adults laughed it off between us and off he went. It's cute now whilst he's little, but when he's ignoring people at 18 he gonna seem rude. But that's William, his life is blinkered to what he wants to focus on, and if you're not part of his plan for that moment then you're screwed 😀 Hopefully people will be more accepting with awareness. 

He's been pretty interactive with us too when he's felt like it. One evening we put sunglasses on. He stole mine, I had to squeeze into these toddler sized ones with elastic which nearly cut off blood supply to my forehead. But he loved it and was worth the suffering while we took some selfies.

Moments like this are rare. Williams brother Alex is a huge fan of waffling and loves quality time with family gossiping about not very much and it's great. William likes his time alone doing things his own way, and rarely wants adult input (though that would benefit his learning 100 fold). So when he comes and flings the toddler glasses in my face, we put the glasses on and worry about the ingrowing eyelashes later! 

Campervans and cuts

What a day it's been!    Last couple of days were pretty uneventful but today seems to have stirred a few thoughts. 

William has often showed an interest in a campervan diecast model that belongs to his Dad, but its not really a toy so he's not allowed to play with it. However, William sneaked it out of the display cabinet and I found him joyously making "zoom" noises with it in the air and looking very cheeky when I caught him. So with a bit of pleading from me and the hopeful excited eyes from William, Daddy found 3 mini campervans for him to have in EXCHANGE for the prized diecast model.  So.... now William is now the proud owner of 3 mini campervan toys AND a diecast model. William 1, Daddy 0.  Who says he doesn't know what he's doing! 

Its nice to see him show an interest in something new, that doesn't involve banging doors, repeated sounds, spinning or yogurt. 

Later in the day we had a couple of negative events. William and his brother were playing in the front garden of their Grandma's house. They were being watched but in a split second, William was out of the gate. He's never ever done this before and we spend a lot of time visiting Grandparents. This was quite worrying, as William has very little sense of danger and would no doubt have wandered into the road happily. So that's something to bear in mind.  

We do a lot of walking and we always do the green cross code routine, yet William is blissfully unaware of the damage that a car could do to him. He does not like to hold hands unless he chooses to, will not walk with reins and will struggle free of a wrist strap. Quite often we will be seen grabbing William up off the floor as he drops, or supporting his head as he goes to throw himself on the floor to avoid an injury. Sometimes he's just being a typical young child and will only lie there for so long till he realises you ain't responding. Other times he won't get up. Other times he will get up and walk in the opposite direction and you'll be chasing him like Peter Rabbit. 

 A favourite place for William to run off dangerously is in carparks, particularly Asda. I noted a few weeks back how I had bruised his arm when I grabbed him to stop him legging it. I'm pretty sure I'm also on CCTV at Iceland chasing him as he decided to leg it through the automatic doors.  Automatic doors are a serious ballache. And I don't even have balls. 

For much of the late afternoon he was a bit of a grotbag, lying on the floor and generally being defiant. He wandered off at tea time, refusing to eat, and at some point he cut his finger on something quite badly and was dripping blood around the house and up the walls. I still have no idea how he did it or what on. He wouldn't let us look at it or dress it, mainly I think because it didn't bother him much. He was more miffed about me running round the house after him in a blind panic with a wet tea towel. I know my house needs decorating but I'd prefer proper paint. 

Dumping him in the bath helped, and i puffed a bit of talc on it to dry it off. I'd read on a budgie group that cornflour was good to help with minor cuts or broken blood feathers, so i figured id that would work on budgies, then talc might help with a flapping child. 

After a bit of bribery with a blackcurrant lollipop I got a plaster on it, which didn't stay on too long, but got us through an episode of Iggle Piggle before William popped it off and flung it on the floor with a look of victory. 

William has a reduced response to pain. He seems to have an initial flinch or a little cry if maybe he's trapped his finger, or sometimes a bit of a shock, if there is a fall, but there doesn't "seem" to be an aftermath for him and he carries on as he was. Illness is always difficult, he can't explain he's feeling rough, so its usually a guessing game unless there's an obvious clue like streaming snot.  

Tomorrow's fun includes swimming! For William, swimming usually involves running around the pool collecting the balls and watering cans. Which is obviously great fun for him but no so much for me running after him like a beached whale. We go to a session that's for special needs only, and it's great. Alex loves having a paddle, and enjoys fleecing me to buy something from the vending machine as we leave. 

Have a good evening folks and thanks for reading!
x

Who is William?

Hey All

Today I'm gonna give a bit more information about William and some of his issues. For those who are aware of autism, no 2 people are affected the same. Its a huge spectrum and affects people in different ways, but they're all amazing individuals.  

William has typical features of the "triad of impairments"

Social interaction - in his early days he rarely interacted with anyone. He used to sit at the side of the room and play by himself and didn't want anyone involved. Not even me. And that was really sad. Not for him, that was what he wanted. That's improved massively in the last year.

Social communication - although William started speaking at 13 months (ish...!), Dada, Baba, the usual funny noises babies make. It changed at about 15 months and he no longer spoke. It was high pitched squeals, squeaks and crying. And that was all he did. It was a bit hard on the ears and to hear him cry and moan all day because he couldn't tell me what he wanted or needed. We had to second guess everything and use trial and error to find out what was bothering him. Sometimes we never figured it out and he'd just give up and walk away.  Communication is still a major issue, and now I have completed a signalong introduction course, we are starting to use symbols and home and in school, to try and encourage speech and other forms of communicating his needs, wants and feelings.

Social imagination. William has very little imagination, maybe none yet, its hard to tell. He will copy things he has seen sometimes, but he has to see something happen numerous (maybe 100 times) before it'll become an action for him. He enjoys lying his Upsy Daisy figure on the floor and telling her to get up, like Iggle Piggle at the end of In the Night Garden.

There are several other issues, mainly his love of repetition, poor sleep and he has moderate to severe learning difficulties too. 

Different information sources talk about these "impairments" in different ways. To be honest, I don't really pay much mind to them, its just medical theory. Although its important to work on the areas that William has problems with,  they're not quite as important as.....figuring out his STRENGTHS....

Its easy to feel sorry and think oh God he's "autistic" (I don't really like that word), oh what a shame, he's so different yada yada. But to be frank, William really does not give two stuffs. He is who he is, he's not defective, he enjoys a good fart like the rest of us, he avoids veg, he enjoys watching You've been Framed and will have a good old chuckle at people falling into ponds and smashing their faces in.  He loves banging things, hence his nickname is Bongo.  

And.he.does.not.like.going.to.bed......

Part of William's problem is that he's very stubborn and very passive. He requires a lot of adult input to help him learn. And if he ain't in the mood to learn what you want him to, then you're doomed and you might as well go get some coffee instead. William learns what he wants, when he wants to. School have some great tactics for dealing with him, and we will carry on with those until we figure out how to unlock his potential.

It's exhausting at times, but the small glimmers of hope we get every now and then are worth every minute. He's not "stuck" or "locked in", he's got a lot up there in that little brain of his, but he just isnt' ready to share it with me yet. I'd better stock up on some Tenas, because when he does decide to shine, I'll be wetting myself with excitement for a week!

"Wave to the Wottingers!"

The beginning

Having a diagnosis of autism in my child at the age of 2 is probably the worst thing I've ever gone through in my life. Although I had suspected it, well I pretty much knew he had autism, it never prepared me for that moment when we were told. 

It was like  "yes its clear now that these behaviours aren't going away and all the evidence from assessments shows, he fulfils so many of the criteria from blah blah blah thingumy yada yada b*llocks classification". I have no idea what that blah blah b*llocks stuff meant, I wasn't really focussing on that but it was something to do with mental disorders. Basically we were told that William was showing enough of the behaviours and developmental delays to classify him as having autism. 

We were sent on your way with a little gift pack containing names and numbers of support agencies, a brochure of autism disorders and a "see you in 6 months, such a person will be contacting you at home". Well that's how it felt but perhaps not so brutal, the paediatrician was amazing and its thanks to her that we got an early diagnosis. I've heard stories of children waiting years just to be initally assessed. 

It was kinda like when you bring your new baby home from hospital and you've no idea what to do with it.  Well if there's no frigging manual for a new baby then there certainly ain't one for a child with autism, Jesus Christ. Hello Dr.Google!  

Back to feelings :...

Well walking back to the car I remember talking to Si and saying how gutted I was. He said that we knew he had autism anyway so it was no different, but having someone physically tell you that means that all the slight chances of him being Ok were well and truly stuffed.

Relief?
Once i'd got over the feeling of being hit by the 582 bus there was a sense of relief. Now there would be no more waiting for someone to make a decision on what was wrong. We would have support and very early intervention so now was the time to get some professional help and make life all better again. Relief soon turned to....


Grief
My little dude was never going to be what I had wanted him to be. What if he never ever spoke? What if he could never say "Mum"? You see all these terrible stories about people in care. Was he ever going to live independently? Would he ever get a job? What would happen when I die?
The worst - my God was - he's never going to fall in love, get married/have a partner and have children.  Maybe he'd never know what love was. 

Bearing in mind the poor little bugger was only 2, this was a lot for me to worry about, but I really felt like I'd lost my William and he was gone forever, and it broke my heart. 

Good evening and welcome.

Hey everyone, and welcome to my blog!

A post to introduce myself and why I'm here.

I'm Pam. I have a wonderful family, My partner Si, my 2 boys, Alex who is 6 and loves to make jokes about farts, poo and willies. William is 4 and loves Iggle Piggle. We have a pooch named Nibbler, 2 budgies Crystal and Ruby, and a host of fish and stick insects.

We're a pretty regular family, we like to spend time together, we argue, we eat junk food at the weekend and my house is never tidy. 

So here's why we may be a bit different to you. William, has autism.  And having autism doesn't define him as a person by any means, but it can throw some pretty serious crap at us sometimes.

I guess this is mainly for my own benefit. On bad days, chatting or typing stuff really can help you deal with the day. On good days you're bursting to tell someone what's been happening. 

Please bear in mind that I've no idea what I'm doing with blogging, so if some days there appears to be random pictures of budgies or a dogs butt then you can presume that I'm trying to be adventurous and it hasn't worked.

I hope you enjoy reading! 


"Wave to the Wottingers!"