Friday, 15 May 2015

Anxiety and Autism

It has been a while since I have managed to sit down and write, little facebook posts here and there seem easier.

A few people have asked me to talk about anxiety..... here goes!

Max has always had anxiety, high anxiety alongside his autism. It is part of who he is, a worrier.
When Max was little (say 5 plus) he started to display 'behaviours' behaviours that I now know were not 'autism behaviours'
I am not a doctor and I do not profess to know everything about autism and anxiety but I do know my son, I have learnt and am still learning, every day brings something new but all that aside I understand him.

The start of the behaviours I mentioned were

Involuntary screaming

We just dealt with things best we could, can't say we always got it right or agreed for that matter but these were the additional struggles Max & us worked through.
Every year it was a cycle of behaviours, no help offered, no help available. We would be asked by the next new social worker who visited annually to complete their 'paper work' "Do you know what causes it??" "Do you keep a diary" "ABC charts....." (I swear when asked to fill out ABC charts...)

With Max's behaviours ( I am calling them this because it wasn't really him.... I now know it was a knock on from anxiety) we never really saw them coming. This sounds ridiculous to say we didn't realise the sudden screaming or hitting but sometimes you are so caught up trying to make things better or work out what is going on that you don't see, until you sit back and think bloody hell what happened there, or, he doesn't do that any more.

This has been the pattern throughout his years (Max is 13 now) up until last year when we were finally allocated the most wonderful professional I have ever let into our crazy world!

Rewind a few months prior, whilst having our annual social worker meeting when we were told that Max most likely wouldn't be living with us when he was 16 because we wouldn't be able to manage his anxiety & behaviours.
I did loose it slightly at that remark made by someone who had met us once. As a parent when you are in crisis and you try to get help but there is none - like EVER you learn to just get on with things. He is our son and we do the best we can. We may not always agree and we have come to breaking point many times but we get up and carry on.

I left that meeting and cried, I mean big ugly snotty crying, for hours it felt. I never get upset and for those of you that know me you will know I always try to have humour and the motto 'things could always be worse'
But that really got me, someone looking in saying we couldn't look after him. When there has never been an offer of help for the behaviours. The involuntary screaming. This took over our lives, Max would let out piercing screams, up to 4/5 times per hour. In any place in and setting!
His education was disrupted because of it. It was heartbreaking, some mornings he would get in bed next to me and from no where he would scream. He tried to stop himself by putting his hand over his mouth.

I naively thought as it was affecting his education we may get help (Max's then school was out of borough which meant our residing borough would need to get involved) it gets a bit tangled with educational psychology protocols but hey I was just glad things were moving along

I got .... ABC charts !!!! yeah great, thanks for that, anyone want to read them??? NO
A social worker pushing to get us back into child and families, I was sent an appointment with the opening sentence ' we do not offer on going support for families with children with autism, we have booked you for 3 sessions'

I declined. And we got on the best we could

So back to the to best nurse to have ever helped. He was a locum learning disability nurse (go figure) and has since left but I do write to him every now and then. Like I say he was ace.
He listened, came up with strategies to work with Max's obsessive behaviours that were ruling him & us. He really helped us,  I did give him hell when he first met us, I was defencive parent, negative parent & no one has ever helped us before parent (yes there were toys out of cot)
He realised that some of the behaviours, the pacing, not sleeping, kicking and screaming were a potential product of his anxiety.

He referred Max to psychiatry to chat medication. This was not so long after Max kicked the windows out of his school transport here is the post to that escapade!! 

In the intrim I had taken Max to his GP who felt it was out of his remit but prescribed diazepam to give Max when his pacing & not sleeping became too much for him. He prescribed this on the basis Max was recieving behavioural support from a nurse and the diazepam would not be long term.
We tried it once, it didnt help and the bottle remains in our medication cupboard. (Handy for stressed mummies ........ as if !!)

I had already been doing my homework on the types of medication out there and submersed myself in the talks of Dr Temple Grandin and her experiences of having autism and how medication helped.

Max started taking fluoxetine  in October 2014

Not lightly, even after the appointment with psychiatry we went to see Max's GP to ask him what he thought. It is a really battle of the mind you have, taking the decision to medicate your child.
The way we looked at is was Max needed a break from himself, the pacing, fingers in his ears muttering, racing heart, sweating. Ransom behaviours that I cant explain but I know were a by product of his high anxiety.

That was 7 months ago.

Has it helped?? hell yeah, massively.

Max just seemed to relax more, he sleeps better, less pacing, happier in general. His OCD type behaviours have lessened. He is able to enjoy things more, he still has anxiety, autism anxiety I call it. That will always be there - the need to repeat things and plan and talk about that same stuff over & over. The medication has taken the edge off the real anxiety. It has allowed his to enjoy things and join in on more activities and outings.

He landed himself a bit of a speaking role in his school Christmas play, better than that he managed to be in the actual play and was happy I was there. Max has never ever ever coped with assembly or concerts, he finds them really hard. He was happy.

In the past family outing were a bit of a no go as his behaviours were too unpredictable.
Over the Easter break just gone we managed cafe outings - Max's was choosing his own food, park trips, feeding the ducks and we even booked a meal out

All of us in a restaurant, he ordered his own meal.

I will sign off now with a video, a happy, relaxed boy with profound autism who managed to order his own meal and he had a jolly nice time eating it

Until next time

Martina & co xx

Monday, 29 December 2014

Open wide....

December saw a trip to the dentist, Max's previous dental appointment didn't go too well as he was preoccupied with getting to the local shopping centre and wouldn't allow a good dental exam

Max has become much better with age with his dental visits, when he was younger I remember taking him to hospital for general anaesthetic (horrible memories!!) he has a few extractions & a large crown fitted to a back tooth

When Max had any wobbly loose (tooth fairy worthy) teeth he would get so annoyed with them, he couldn't cope with the wobbly feeling in his mouth. So, he would get a small towel and bring it to Dad! ...... PULL, he wanted Dad to use the towel to hold on to the wobbly tooth and pull it out. I do remember going into Max's room once and finding him covered in blood where he had managed to pull his own tooth out *shudder*

Dental visits for children with autism can be stressful , it is such a sensory overwhelming experience. The bright lights, the smells, the tastes and the noise of the machines and the latex gloves & face masks your dentist wears. Fingers in your mouth (rather them than me, however Max isn't a biter!)

Anyhow, Max's recent visit went really well. We both went with him this time and took lots of pictures & video as he loves to watch things played back.  He allowed the water jet to clean his teeth (this is a first) the suction (hoover) He coped so well & managed to give me the thumbs up whilst having his teeth cleaned and showed quite good skill in speaking.... telling me "strawberry sundae McDonalds" .....I told the dentist not to judge and as a parent you need to bring out the big gun bribes sometimes!!!

Max's dentist is a specialist dentist and they really are so great with him, they spend time and let him stop & start as needed. They also don't flinch when he spits the water into the mini sink but he misses and it goes all over the floor

No stickers though, Max most certainly wont entertain a sticker.... water jets yes, sticker, no way!!

Sunday, 19 October 2014

Its been a while...

All good intentions and all that!

Max goes back to school and the blog goes out the window!

Its been a bonkers time, really busy, too busy. Max has settled back into school really well and is really happy. Sadly it is everything around and out of school that fell apart . Its hard to get a balance.... there may be the odd day where all is rosy in life but this has mostly not been the case!

Max's emotional well being took a real bashing from the change, he wasn't eating well, skipping meals and only eating 1 part of his dinner at home. He stopped wanting his bath found going out at the weekends to do his favourite thing - shopping a real struggle (he was changing his mind and getting anxious)

Sadly after just a few weeks back at school Maxs home - school transport was suspended due to an incident, a behaviour that he has displayed on the way home from school ever since he has been travelling the long journey (best part 1 hour each way) escalated to the point this happened ........

Yes - he broke the car window, with his feet, with no shoes on....... Okay , what do you do? 
Max had been showing a 5 min burst of high anxiety on the home bound journey for a year, started with him being silly, hitting the window with his hand or banging the roof of the car inside. In September when he went back they had changed his driver, nice change for the first day back! 
The new combination of female driver just didn't work, his behaviour just got bigger, kicking , no apparent reason.
Max will not take any toys, ipads, games or distractions as he just doesn't associate them with school. His new teacher was trying hard to support the escort in distraction techniques for the 'hot spot moments' but it was all too late in the already behaviour riddled journey....... 

Something else to feel guilty over, his school being so far away, the financial cost and battles to get him there in the first place as our borough have no provision for children with autism, dammit its crap! 

So, we have pick up the pieces, literally 
Maxs Dad doing a 2hr school run in the morning, me finishing work 2 hrs early every day to collect siblings when Dad collects Max, the cost in fuel has been a bit grim, my bank balance has been robbed. To add insult to injury I will need to have a word with the Education dept as they offer of payback for this will not cover the fuel costs at all..... BUT ...Max is so happy, this makes complete sense as why wouldn't he be! He goes to school with his Dad, its 'normal' he gets collected everyday with his ipad , cookies and the Monkeys Album to listen too (yes he wants the ipad in Dads car) 
And he loves the Monkeys, big time retro boy he is ;-)

Guilt, that what I feel now as he is happy, we cant sustain the transport and he will need to be re introduced, its been 4 weeks , thats too long, hes happy and in a good routine. They don't have any male drivers / escorts..... watch this space I will update again! 

Apart from that, Haircut, yes he had a haircut, not always the easiest to manage. Ive done the high street type where he kicks and spits because he wants to get out! Now he has our friend Cheryl (well its been her for years now !!) It works on the most part, this time he had his hair cut in his room, TV distractions 

What else? 

Oh, bubbles, he's got a winter load of bubbles - direct order from the warehouse 

I walked a marathon ....9.35hrs overnight for cancer research - it hurt!

Thats it for now.... I finally got the Consultant Psychiatrist appointment tomorrow, that took 7 weeks, even Max putting his feet through a window couldn't speed that up !!

Almost forgot, managed to bag myself 2 roles at the charity that supports Max's school, I needed another job. No seriously its hard work BUT its for the kids is my mantra on this one, next June I will be completing a 29mile wlking challenge over the Brecon Beacons in Wales to raise money for this charity  *yes I will hassle everyone to sponser me*

Urm.... ill be back ;-) if I survive work and 2 weeks of half term 

And its goodbye from him 


M x 

Sunday, 14 September 2014

Guess who's back?

Max is back! No more selfies from now on, he doesn't entertain it... I have to take pictures from a distance so I don't get attacked, hehe. 

So, in between throwing bubbles up the shed and tipping milk away, he let me take this half decent picture of him. He then decided to run off and play Grand Theft Auto.  We've had to move the Xbox from Bailey's room into Max's. He plays it so much now that he woke up Bailey at 6 in the morning climbing on him because he wanted to sit in his bed and play it! 

He's been in there for about 2 hours now, running people over and blowing cars up. He still hasn't learnt to turn it off yet though, he just finishes playing, and leaves it running.. The Xbox has almost become a part of his daily routine. Even when he is anxious about going to school, he still manages to squeeze in 10 minutes of death, fire, guns and mayhem. 

Other crazy happenings: 
He ripped up a pair of pants in the kitchen for no apparent reason, and squirted a whole tube of new toothpaste down the sink. Combined with his virtual death obsession, I'd say that he has quite the appetite for destruction at the moment... 

He's on his bed now watching his random dose of YouTube videos. Hopefully his need for destruction doesn't lead to the death of the IPad...... 

Anyways, I'll catch you all in the next blog post, Bye!

Tuesday, 9 September 2014

Anxiety Rules


Can you hear that??

SILENCE *insert dancing me, whooping and punching fist into the air*

Yes schools been back a week for Maxy boy, the night before is why I am posting this blog and the subsequent week...

The night before school re started I anticipated he would struggle and boy did he. He asked to go to bed uncharacteristically early for him, 10pm, where he lay frozen in a forced state of 'yes I'm going to bed' position.

Max finds the first night back to school ie: every Sunday night and after holidays very stressful

So, back to last Tuesday, after the frozen pose he continued to stay in his room until 2am, he then got into bed with us upstairs (does this every Sunday)
At 5am he was up and in the most stressed state hes been in for ages.... (flying does this to him too)

Lots of pacing, up the 2 flights of stairs, fingers in his ears repeating little mumbles over and over his heart was racing and he stunk! sorry but high anxiety can make you sweat. This lasted for 3.5hrs until he left with just a sip of water and a trembling bottom lip repeating 'home after school home after school'

To add insult to injury he had a brand new driver for his first day.... helppppppp

He was so exhausted when he got home and was falling asleep in our bed from 930pm, he wouldn't get into his own bed until his Dad was upstairs also, for about the past 8 months he will not get into his own bed until we are both upstairs!

I mentioned previously that Max has had a referral to psychiatry, there is a long waiting list (go figure)

It is so frustrating because for the past 3-4 years I have been saying to any professional that passed by and yes they are like passing ships there is little support for our 'autism' kids, I repeatedly said he has anxiety issues

Such a shame they have waited so long to go ' Your son has such high anxiety that it is unlikely he will be with you when he is 17 as you will not be able to manage him' YES that line is a true account of a comment given in feedback my a social worker who had never met us and has since vanished into the ether.....

We do however have a great learning disabilities nurse who has been helping over the past few months (he leaves next week)

But an appointment is due.... one day.... if they have a psychiatrist in post....... and they have experience in children with autism...... and I trust them......believe them....... like them I have issues?????????????

Here he is a week in with a sore face, he gets this sore mouth when he gets worried, starts off small and grows and grows, he refuses cream, self heals

He is a strong boy and trys very hard to self cope - the frozen pose in bed?? hes trying to help himself, only its to much for his little body to cope with. His routine is all wrong, he doesn't eat breakfast, he now thinks dinner is at lunch time as they call lunch at school  'school dinners' so he wont eat dinner at home..... arghhh is all upside down

So, thats us for now

Peace & love & all that jazz 


ps - Reece hasnt forgotten his blogging duties, Max will not entertain #selfiesunday so it may be a blog post from him with no photo, unless he gets the art of photo bombing under his belt!!!! 

Sunday, 31 August 2014

Feeling frazzled and 100 years older


This sums it up really

Max starts school again on Wednesday, his anxiety levels have risen at the thought of this prospect where as I am giddy with excitement

The holidays have been long for him, I feel for children with autism plunging them in to 6 weeks of mayhem, because actually thats what it is, its so unfair.

Summer School - theres a thought, not for the whole of the 6 weeks but for some of it, familiar surroundings and faces, anyway like thats gonna happen as that would be far to child centred and logical

Maxs behaviours have been off the scale, he finds it so difficult. To give him credit he does try really hard to occupy his day but the only time of each day that really makes sense to him is dinner, bubbles and bath. Some days dinner has been at 3pm!!!

He has been skipping breakfast, having diet coke and cheese strings for lunch, now before you ll start wagging your fingers at me with the 'your the mum, you give him the food' he is completely frazzled in his head, his structure, the very thing that keeps him together and 'in place' has gone

I must just say Max has the best diet out of all my children ! he east really well, loves his food and thankfully doesnt only eat certain foods - its just the summer has upset his routine

This is not as easily rectified at home, he has a daily planner that i have on the fridge (he has thrown away most of my laminates for it breakfast & lunch!!

See the missing pictures!!! looks' a bit blank really 

Sadly, due to his high anxiety levels he refuses to go to any kind of day clubs out of home, he has even refused to go out with his 1-1 worker who comes every Sunday for 4 hours. He has been with us  every day for the whole holidays. I would love for him to get out and about but he point blank refuses, to the extent he tears off calendar pages if he sees activities written down
This makes for a very wound up 12yr old boy!

There have been a few traumas.... like he broke our bed in half from jumping like a trampoline , breaking his own toys, ripping up books, throwing food, juggling fruit, hitting, kicking, a disastrous shoe shop trip where he kicked out and screamed the shop down *insert "regular families continuing around you"

He has cost me a small fortune too, in itunes episodes of shows, amazon orders and food! Again, these 'treats' are usually used as reward for good behaviours and listening..... but I tend to buy extra things for him over the summer as it fills a gap in his day, the time where he isnt bored because he can watch something new. One bonus though was he discovered the Xbox! Reece wouldn't think so mind you as this is his 'baby' LOL, however I should probably be concerned that Max likes GTA ...... driving cars and blowing them up...... *insert eye roll here*

Sadly his behaviours have affected how he gets on whilst out, any one that knows Max will know his regular Saturday trip to pundland is a big part of his week, even this has become tricky. I think alot of his issues are borne of anxiety, he has been referred to a psychiatrist so lets see what the outcome of that is. I am generally not very patient with 'proffesionals' as they are strangers who do not know your child, there is no consistency in services, but as a family we have come to the realisation that Max needs help, more than we can give him. It our job to help him, to help with his anxiety to hope that it will allow him to enjoy his life a bit more????

When you see your younger children 'jumpy' around their brother because his behaviour can be so unpredictable its time to think of a plan B .....

Anyhow ... enough of the pitty party, I have had enough of these recently, and if Clive & I were married (Ssssh living in sin is the new married!!) we would have divorced, summer holidays magnify things so much more, the guilt that you cant do what everyone else does, that the other children miss out .... it goes on and on , oh and the why me always creeps in. To say 'I wouldnt change him for the world' well thats a pile of crap because I would wish a thousand wishes for Max not to have autism because its shit!

*and breath* ........

Tuesday night should be interesting, the night before school - this is a night where Max never sleeps until he can get in bed with me, he paces, up and down with his fingers in his ears, anxiety overload

So, I started the blog at the beginning of the holidays.... we made it (mostly) as I type Max is sat next to me sniffing my neck and touching a freckle on my shoulder.... sensory ?? MUCH !!!!

He is kicking me off the PC now as he needs a Fleetwood Mac & Supertramp fix

This was last nights music fix 

Thanks for reading, peace and love and all that jazz
see you on the other side, i'll make the tea if you bring the cake

Martina :-)

ps - thank you to my online buddies that have listened to me all summer

pps - im off to cook a roast dinner (maxs orders) and listen to Ed Sheeran !!!!

ppps -  have you watched Derek ?? Ricky Gervais ..... GENIUS!!!!


bye xx

Sunday, 17 August 2014

Selfie Sunday

Hello everyone, 

Max asked me to go on the trampoline for the first time all week yesterday, he's usually asking me every day! He keeps trying to push me into the swimming pool aswell...that water is freezing! 

Online Gaming With Autism: 
My main hobby is playing games, and Max enjoys playing too. It just so happens that I was playing online with my friend, who's younger brother also has autism. His brother was telling him where to go in the game, and what to do, when Max walks into my room and asks for a go on Grand Theft Auto! So in the end, Max was controlling the car that my friend's character was sitting in! What a coincidence is that?! 
He's upstairs now watching videos, he's getting slightly better at managing his time without the routine that school brings.