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!!

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 

Bye 

M x 

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!

Anxiety Rules

Sssshhhhhh

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 even......do 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 

Martina 

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!!!! 

Feeling frazzled and 100 years older

So.....

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 ....ie- 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!!!!

#justsaying

bye xx

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.

Selfie Sunday

Back home for the second day now. Not much has happened in terms of bloggable content but I'll try to write some stuff anyhow...
Max has been more relaxed and calm since we've come home, he has part of his routine back.. And knows that he can go to poundland on the weekends. He was shouting a lot on the drive back from wales because he wanted to blow pieces of carrier bag down Twickenham high street (one of his new obsessions is blowing things that float around with the wind) we had to say no.. Which caused him to have a half hour session of screaming and kicking the car window...

The Stealth Sneeze... 

There I was, about to take the selfie with Max and Bailey when Max had a massive sneeze. Spit sprayed all over my Ipad and arm... Lovely. Bailey found it funny when I was wiping it off my screen, I think even Max was laughing a little too! 

The Broken Bed...

Max likes to close himself in rooms on his own, because sometimes he doesn't want anyone to disturb him. Today he was in my mum and dad's room, watching his daily dose of crying babies and airplane take offs, when he stood up and jumped on the bed as if it was a trampoline. And guess what. He broke it, yup, he bounced on it so hard that the actual metal supports bent. The things he gets up to in his spare time, eh.

Anyways, I'm off to have a bounce on the trampoline with Max. Bye! 

Silent Sunday

Home in one piece.... kind of

So.... If you follow the MaxDout facebook page  you would have spotted some holiday snaps
We all went away to Wales and stayed in a lovely house nestled in the Brecon Beacons, we stayed there last year and had such a nice time we decided to go back again

Max always gets some holiday related anxiety, almost panic buying (he gets that from me!) this year he did however really seems to struggle with the whole change, this started on the journey there, we needed to make a few stops on the way to get more bubble liquid - he had 14 litres of the stuff already, we have gotten him down to 1 litre a day so we averaged 7 litres would do it but doubled up just incase!

However..... he bought a bag full of various bubbles before we could even leave the town centre to start the drive to Wales, oh and sweets, and walkers crisps and baby shampoo and drinks

Jeepers its endless!

I think this year Max found the whole holiday experience difficult, he over thought everything and found managing his days difficult. We tend not to do the 'usual' things people do when on holiday, mind you what do people usually do??

No trips out or meals in restaurants, it tends to end in some kind of disaster, we managed a trip to the Brecon Beacons where max blew his bubbles and the kids decided they wanted to fly their kites....
Max lasted 15mins and then sat in the back of the car screaming, this sounded great when the American tourists cycled past and stopped to chat to the kids about their kites (we have tinted windows on the car so no one can see in at the back) there was just the howling.... :-)

His 15mins on the Beacons!! 

Playing with Dad 

This year we had more kicking, screaming, hitting siblings, hitting objects, throwing things.

Seriously, they call it a holiday?? It is hard to know what to do, it is a 24hr a day 365 day s of the year  quest to help him, calm him and make him feel stress free and to keep him centred, its easy for him to go off balance even with all the planning and social stories in the world

What do you do? stay home, never go out or drive 4 hours to spend a fortune on a house where you stay in there only you police him all the time as he keeps getting up to mischief!?

Maybe I am having what I call a pity party!! woe is me and all that, but there were some moments where i really had had enough. There we a few 'grown up rows' I made a few SOS calls to friends on line (thank you, you know who you are)

Is it too much for him?

Yes probably

It wasn't really 7 days of trouble, more 6.5

Max's siblings had some goods times, building fires and building camps, I do think they are the most forgiving kids ever, as a parent it is hard to watch them miss out, or is that my perception of thinking they miss out, is spending time together enough? I wonder do they get the best of us as parents

Reece, Bailey & Evie built a den in the woods 

Bloody hell, I am having a pitty party!!!

Holidays with kids eh, easy peasy

Max thinks he is going on an aeroplane next year to go to a warm not hot place with a pool (his words), I wont go on but the last time we travelled on a plane with Max he had the mother of all meltdowns on the plane.... spent the 2hr flight locked in the toilet (insert shaking mother here and lots of passengers giving me 'that look' of god i feel so sorry for you !!! )

Trip to a Spanish hospital was needed for diazepam for the flight home - I said never again

BUT - I LOOKED AT VILLAS LAST WEEK!!!!!!!  Now I am thinking should I just take the other children on an all inclusive hotel holiday abroad, let them enjoy peace and normality (what is bloody normal anyway)

But the heart hurts at the thought of not going with Max, god guilt is a bitch sometimes

We are home now, Max completly lost the plot just as we go to our home town wanting to do loads of things - shopping trips and blowing bubbles at random shops, he is so consumed with anxiety and a bit of OCD, the car windows were nearly kicked, hes getting pretty feisty!
The only saving grace was his 2 VHS videos he ordered off Amazon whilst he was away had arrived - did you see that? yes Internet shopping whilst away .... more anxiety busting escapades, he needs his own wage cheque at the moment.

The stress of the journey got too much today 

Anyway, I don't mean for this post to sound really down, we love Max so much but this is the hardest job in the world, sometimes it is completely overwhelming and you question what the hell you are doing and if you are doing a crap job of it all

And breath.....

Right, I am signing off

Normal nonsense will resume tomorrow, I'm off to put on my big girl knickers and stop acting such a fool

Peace & love and headaches all round

M xx

Last night of Holiday bedtime selfie! 

(after max launched my phone across the room twice in the process)

'Courage is asking for time out

to shed a tear, to dust yourself off and then get back

in the ring to fight like you've never fought before'

its not really a fight!!  but saw this quote today and liked it  

Sunday Selfie

So...

I woke up this morning to a complimentary trampoline treatment... Yep, he was jumping on me at 8 o'clock in the morning. He is enjoying his holiday so far, throwing cups at windows and jumping up and down in the puddle of a stream, and asking for a "horsey" ride home.

He's had his bath now, and is watching YouTube videos of airplanes taking off and landing.. Strange child :) 

See you next Sunday!

Bubbletastic

So

That boy of ours loves his bubbles, this has been his obsession of choice for about 3/4 years now, I cant quite remember when it started or when it became such a big need, these things tend to develop without you realising. When a child with autism likes something or trys to request a need you tend to over indulge them (I do anyway) you rejoice and find the positive

UNTIL .... it has taken over

Max has a serious need here for blowing bubbles, it is his means to escape, to zone out and be by himself plus it is very sensory. Before the bubbles came it was a big bucket in the garden an stones, Max would spend hours repeating throwing stones into water.

Max takes this 'need' with him, so when we go away we pack the bubble supply! Thankfully we have a local poundland store of which my friends laugh as Max is a regular there, they no him by name and smile at his crazy parents that order bubbles in bulk. Please don't forget here friends that bubbles are seasonal, so come the winter we found ourselves seeking them out in any shop possible

We were like bubble addicts, but then out clever brain kicked in.... we now order a palate full (no joke)

Max uses 2 litres a day on average (£2) he has to have a new pot each time and can not save any, when he is finished he discards it. I worked it out recently and he spends on average £700 a year on bubbles!

Friends say to me 'use washing up liquid' really???? this boy is a bubble connoisseur ...its like a fine wine to him - he knows his stuff!!

Anyway, today Max had waited all day for his bubbles, he is having his dinner between 3pm - 4pm to get there sooner. He has been really good and has manged to get himself down to 1 pot per day, but like I said when hes done, hes done..... Do all children with autism have obsessive patterns? Max always has.

Max is going to be 13 in December this year 

I was thinking foam party (he loves foam too) or 

what are the chances of seeing this guy?? 

Sam the bubble man 

Anyway peace & love & all that jazz & bubbles 

xx

Selfie Sunday

Hi everyone, Reece here. I'm Max's older brother and this is my first post! Mum is teaching me how Blogger works and how to write posts. I'm going to be doing Selfie Sunday, which is pretty challenging since Max doesn't seem to like having pictures taken... you almost need to bribe him to get him to stand still!

Anyway, here's a bit about me. I'm 14, and I am going into year 10 after the holidays. I enjoy anything to do with computers or games, and I am a Walking Dead and Breaking Bad fanatic. I hate excersise, and am probably the only boy in existence that finds football boring... Yep, a boy who doesn't like footy, who would have thought it?

Anyways, I'll be back next sunday for another post! Bye guys :)

Being told to be quiet by strangers

A quick post

Max went on his usual weekly shopping trip where burgers & rolls were on the list! (after poundland for bubble liquid of course)

So, picture the scene - Max and his dad, shopping, Max gets distracted and is standing by the door making his usual vocalisations.

In walks Mrs Member Of The Public 

'Could you keep the noise down there is no need'

Clive hasn't had time to respond

Manager of Store 

'Excuse me can you not see that the young man has special needs'

So, that doesn't happen often!!

Me

pumps fist in the air with glee!!!!!!

Happy Friday all

peace & love and all that jazz

Martina x

Ripping books & juggling apples....

So.... a pretty ordinary day here

I have had work which means Clives home with the troops, no mean feat jumping from one request to the next. It starts with breakfast orders and seamlessly runs into snacks, drinks, arguments to lunch... you get the picture

Max has been trying really hard to keep himself occupied. However, he thinks he can juggle APPLES!
Why he chooses to do this who knows, he only ever does this on holidays off school! very random
Alongside the juggling is the 'im being silly song' he seems to hum, not really a song but a noise we all associate with mischief!

I did buy him some juggling balls to try and switch from my poor bruised fruits but he chucked them over the fence! (our neighbours get quite a collection over the fence, last night it was my pot of hot chocolate... I can almost hear their dog groan as I'm sure they hope for something more appealing)

Now, onto ripping books. This is quite frustrating as Max has a habit of ordering off Amazon, his most recent & continuing obsession are the Disney Classic Books (discontinued of course!)

When the obsession strikes the impact can be quite hard to manage, with Max especially as he finds waiting hard (we are working on this! i use it as a bartering system now to encourage positive behaviour) that postman just doesnt deliver fast enough

Anyway, after all the effort in buying the books this happens 

I wanted to show you todays antics but Max has deleted the image off my phone! Max gets some kind of thrill from ripping books - he ripped all his little brothers books

What do you do?? do we need to lock the doors? I just dont know sometimes, with his own books i can kind of understand why as he shreds everything insight and leaves the 2 treasured books at that time

But his brothers??? If he goes near Evies room there will be a riot as Evie is an avid reader, i think i would need to leave for the night till it calmed down!!!! 

I would love to hear from anyone that has had the experience with the ripping (the juggling i can live with!!)

Anyway, in all an average kind of day 

If you see any jobs advertised for paper shredders.... give me the nod! 

Martina x 

So.... who decideds to start a blog day 2 in to the summer holidays???
Thought it would give a real candid account of 4 kids and the huge feat that is juggling and plate spinning - and no i dont mean circus skills !

Max has had a few days ahead of the rest of the gang as his school broke up early, the exaggerated behaviours have started already, I always say the holidays from school kind of unhinge him as he misses the routine

He it trying really hard to manage his time during the day, bubble blowing has been cut in half (by us)  Max is a serial bubble blower, he uses it to block out his environment and calm himself - the only thing is he needs a new litre YES LITRE bottle each time he plays so 2 sessions a day.... you get the picture. Once he has finished his bubble blowing he tends to rid himself of the surplus bubble liquid around the garden / shed / fence as he spins in a circle then the empty bottle generally ends up over a neighbours fence unless he is feeling very helpful where he will dispose in the rubbish bin.

So ..... here we are, first blog post and me trying to work out how blogger functions (bear with me)

Martina x

Taken at the park 22 July 14 

'no bubbles will improvise'