Wednesday, 22 October 2014

The post with no title...

Well we're nearly at half term and I have to say that our start to the academic year has been horrendous! (hence why I have been a bit quiet on the blog front)

September has been a nightmare from start to finish to say the least! I'm not going to go into everything that has happened but I will tell you the main things...

DS started back at school during the first week of September.
As he was starting back with new staff, new children in his class, I knew this was going to be huge for him!
As per usual, I prepared him for the forthcoming changes as much as I could but knew that he would struggle to some extent.

So the first day, I picked up the little Superstar from school he came home and had a meltdown.
The next day was the same, the day after that and the day after that.

Bearing in the mind that before this, his last meltdown was months and months ago, I still had predicted this.
However, as the weeks went on, I expected his behaviour (and meltdown) to improve and decrease but unusually this didn't happen.
As the weeks went by, his behaviour became more intense which puzzled me.

Initially thinking that he was just struggling with the transition back to school, I arranged with school to try a phased return. Taking him to school in the morning, picking him up just after lunch with the idea to slowly increase.
School agreed to this and we did this for 1 week but still no difference.

Now remember, we know our children the best, better than anyone else in this land.
DS and I live together, we're together everyday. We play together, we eat together, we sleep together and we even bathe together! We have a strong bond, a connection, a trust and I know that no-one knows this child better than me!

Very soon, I learnt that something was wrong in school. DS may not be able to come home and say "Mummy, I'm struggling in school because they've painted the wall yellow and you know how I feel about yellow"! (for example) but his behaviour was telling me very clearly something was wrong so spoke to DS's teacher about my concerns.
DS's teacher is a lovely member of staff, she has a lovely way about her and DS is very fond of her, like I am - she made some suggestions such as the classroom was a little different now such as been re-decorated, new ceiling installed etc etc.....but no I felt that wasn't it...

During the next week, DS reluctance to go to school was very much increasing.
He was fighting whilst I was getting him dressed, to get in the car and to go into the school building. It was heartbreaking seeing him so upset looking at me pleading with his eyes until one morning I decided enough was enough! I was no longer going to 'force' DS into school whilst it was distressing for him and decided then and there that I was going to home school him as I was no longer prepared to put him through something that was obviously so distressing for him,

That week I bought a few quality education toys and card games, specifically with colours as I know DS has a interest in colours at the moment so I wanted to start with that which he enjoyed.
We also went on a nature walk to a nearby forest with a picture card of things we had to find and collect such as acorns, red leaf, orange leaf, squirrel.....once we had spotted each of them we gave a big tick next to their picture - it was good fun.
We collected some Autumn things like leaves, twigs etc and we made a autumn display in the kitchen as well as doing some leaf rubbings.

Another day we went swimming and took advantage of everywhere being nice and quiet with all the children in school it was perfect for DS.

A few days later, I accidently learnt that the classroom was still being worked on, new equipment was being replaced a few weeks after the academic year had started!
I instinctively knew that, that could very possibly be the cause of DS's anxiety and stress and arranged a meeting straight away!

That meeting must have been one of the worst meetings I have ever been in my life including meetings I have been in with my job!
The member of staff that represented the school was dreadfully unprofessional as well as very unsupportive!
I'm not going to quote what was discussed in the meeting but believe me it was dreadful! I said what I needed to say and challenged what I felt I had to challenge but I'm sure I got my point across!
It concerns me this particular member of staff's knowledge of autism seems to non-existent!
It was very clear that she just doesn't get it and sees alot of behaviours as 'naughty' or 'playing up'.
I can't even begin to express how furious I am about that and have very clearly communicated that I do not want her anywhere near my son!

I also put a complaint about her with the head who was very apologetic.

So now as we are nearing the end of October, DS is only just settling into school.
He isn't as fighting to go as much and will walk happily in but he isn't quite back to his usual self yet but I'm hoping that we're going in the right direction.

I would like to think that so called 'professionals' (though I'm going to lose that term loosely with this one!) have a good understanding of children on the autistic spectrum who work in a special school with a large in take of ASC students but no clearly not!

Very disappointed to put it politely :(

Saturday, 9 August 2014

Busy Busy Bees....

For the first time ever I feel that the first few weeks of the school holidays are whizzing by!
But then again, we've been extra super dupa busy...

I've just completed a 'Managing Behaviour' course that was covered over several weeks, part way through I realised that it was going to run into the school holidays #eeeek! which would have been a near impossibility!

There would be no way that DS would happily entertain himself whilst I knuckled down to it - oh no wayo!
So I called the tutor explaining this and asked if we could squeeze the rest of the modules into what we had left of term. It was tight but we managed it (just!) completing on the very last day that DS was at school before breaking for the holidays - phew!

Not to mention, starting a two week AIT (Auditory Integration Training) on the following Monday delivered by the lovely Tracy Alderman (please see my previous post about this)
I won't lie to you my friends, I find AIT exhausting! The hour drive there, the hour treatment itself then the hour drive back on repeat for ten whole days but it is so worth it! I simply wouldn't do it if I didn't think it was.
We completed the ten days yesterday - DS did brilliant and looked forward to going most days :)

#I got funding for AIT - please contact me for more info on this.

Another mad panic I had was employing a suitable carer for DS to help out during the holidays to give me some respite......knowing that this holiday was fast approaching, time wasn't on my side.
I was just about to advertise for this position when a small miracle happened! :)

Someone I know stepped forward and saved the day #as well as my sanity.....well what's left of it anyway
For me, any carer for DS must have experience of working with low functioning autism in a professional capacity, be on the same page as me, trustworthy, reliable and of course DS must like them which I can pick this up from his behaviour etc.
I'm not saying that's what all carers need to have, this is just my criteria and is personal to mine and DS's needs #just to be clear :)
DS's carer certainly ticks all the above boxes and with him preferring males this was a bonus!

I discovered DS preference to males a few years back when he went from a female teacher to a male teacher, the difference in how he interacted with the teacher was very noticeable! That much so that everyone commented on it. Ever since I've looked out for it with him and it's a definite, he prefers fellow males :) I've often wondered why this is but haven't so far found a definite answer.

I'm looking forward to the next few weeks going at a slower pace and no doubt DS will be happy about that too.

Hope your holidays are going okay too :)

Friday, 11 July 2014

The Big Move....

In one of my last posts remember when I joked how we needed a bungalow with a wet room as DS floods the bathroom and water seeps through the floor?
Well we have now moved into said bungalow.
The bungalow is new and very very fit for purpose.
We have moved from a busy housing estate in a town to a bungalow on the quiet outskirts of a village which is absolutely ideal for DS's noise sensitivity issues.

DS seems to be the only child around so there is no shouting or crying from other children for him to hear.
At the back of us are acres and acres of fields growing golden wheat that I often sit and stare at with a glass of wine...;)

Managing DS on one level is much much easier than trying to manage him on three levels! Before I was forever running up and down stairs towards the crash or smash I had just heard and whilst DS attempts to flood the wetroom (he loves tipping water out and watching it splash on the floor!) I can sit back relaxed knowing that his sensory need to chuck water about the place isn't going to blow the electrics!

The delicate matter of the move in regards to DS was a operation that I thought alot about.
A house move is a big deal to anyone but to DS a house move = big change and that had to be thought through carefully for him.
I thought about a few approaches to it but for DS i decided on the softly, softly approach :)

As the house was on its last stages of being completed, I took DS to it. For the first couple of times, he was happy just to sit on part of the plot and play with the soil and sand. That was fine, I was happy to go at his pace.
Once he went inside the house, he ran around the place in a whizz! All excited and energetic. It was at this point that I told him that it was going to be our new house and that we we're going to live in it one day.
I took him round each room telling him what each one was.

Once it was sort of ready, I took DS for the odd night there. We would only stay one night at a time, leave it maybe  4/5 nights then have another night there. He was great with this and if I'm honest, I probably could of gone at a bit of a faster pace than this for him but I didn't want to mis-judge and mess it up.

The next step was to actually move in! It went very well, DS has been settling in very well.
I'm still getting to know the area and am chuffed to bits when I discover a little short cut somewhere ;)
It's only been a few weeks so its still a novelty to him right now but I know he will be fine, he has surprised me at how well he has tolerated a huge change like this.......

Damn proud Mum right here.....

Friday, 16 May 2014

Auditory Integration Training....

I've made no secret of the fact that DS has huge noise sensitivity issues.
Due to this we've encountered some quite ugly moments in our time.

I've lost count of the sunny days out we've had as a family which have been going swimmingly well until a child or baby has screamed/cry near DS and within seconds we find that we're prising DS's fingers from the child's hair!

Whenever we go anywhere with DS, Daddy and I are both on 'noise alert'
I am highly tuned into the noises and sounds that I know DS cannot tolerate.
I'm on edge too as I need to move like a ninja if I hear a child cry, squeal. scream or shout or even a parent using a abrupt tone when telling their child off.

My family laugh at how different I dress when taking DS out, I wear my trainers and usually jogging bottoms or something loose as this boy moves fast and I need to be able to sprint after him like I am competing in the Olympics!!;)

Crying, squealing, screaming etc are DS's triggers and he will pounce on the person responsible for the noise which is why I have to move like Wonderwoman to prevent this!

How I haven't developed a nervous twitch because of this is beyond me!

Please understand, DS isn't being naughty when he pounces on a child for screaming. It's is only way of communicating and showing that person that his/her noise hurt him and that he just can't tolerate it.
It's his only way of telling him/her to stop :(

I admit it isn't a brilliant way of communicating this message but when your communication skills are very limited, what choice do you have?

A while ago I decided to look into ways or even treatment (within reason) that could possibly help with DS's severe noise sensitivity issues. I stumbled across something called Auditory Integration Training (AIT)

AIT is a music programme to help people with ADHD, ADD, dyslexia, Autism, hearing sensitivities and a variety of other special needs.

The programme provides stimulation to the hearing mechanism which produces more normal hearing after treatment.

The important factor for me that nothing 'nasty' or intrusive would be involved that would cause pain or discomfort!
The reviews I read on the results of AIT were astonishing and with its success rate being high (children were not 'cured' but were certainly more tolerant to noise) then I set about looking for a fully qualified practitioner :)

Tracy Alderman was recommended to me and after talking to her at length on the phone (and asking a billion questions about it!) I was eager to give it a go!

As a Mum to autism herself, Tracy totally got it! I can't tell you how reassuring that was! *huge big sigh of relief!*
Tracy was warm and welcoming and eager to help :)
The sessions were booked for 1 hour periods over ten days.
The treatment involved DS wearing headphone and listening to 'music' for the hour. I really didn't think he would do this but by day 2 he sat beautifully with them on most of the time!

What DS was really listening to was music with different frequencies to de-sensitize him. We knew when he had heard a frequency that he struggles with as he would take the headphones off and kick/hit out at us, but over the days this lessened which was a good sign that it was having a effect on his noise sensitivity issues! :)

Tracy was very informative and we completed daily tick sheets which monitored DS's behaviour and if there were any changes in it.

By day 2 there were already changes, DS becomes more affectionate all of sudden! Both Daddy and I noted it straight away and we love it!:)
DS also said a few new words and by day 5 he tolerated a noisy water park for a extra three hours than he normally would of done! We were gobsmacked!

Fast forward a few weeks to now DS's noise tolerance is still high up there which is brilliant as he is able to cope with play areas and such.
The first potential incident came shortly after completing the treatment.
We ere on the park when a child playing next DS screamed because she toppled over.The scream would have gone straight down his ear as he was that close to her (already I am there to re-direct him away) he just glanced at her and away again to carry on what he was doing! That would never had happened before AIT!
Several instances like this have happened since with absolutely no need to for me to intervene/do my ninja stuff! Amazing!

In my opinion AIT has worked wonders for DS and we will be returning to Tracy to work her magic for a 'top-up'

Here are her details if anyone wants to explore this wonderful treatment :)

*Please note I have received no payment to influence the content of this post, the opinions are all my own :)

Thursday, 17 April 2014

One Year On....

One year ago today, I launched this blog and nervously wrote my first ever post.

When the word 'autism' was first mentioned to me, DS was around 18 months old and I had no idea what it meant. Daddy and I exchanged blanked glances to the suggestion.

When I got home I immediately cranked up the laptop and started searching frantically for explanations of autism and how it affects individuals.

As you can imagine, there was a ton of information on the disorder all from a professional perspective which was useful but I was also desperate to hear from a parent perspective. I wanted to know how it was for a parent, how it impacted family life, relationships, daily stuff.............I struggled.

There seemed to be very little if anything at all from a parent.

Over the years came DS's challenging behaviours - crikey! some were horrific!
Some of these behaviours stuck around for a while and then eased away and some have never left him, they still haunt our daily lives.

During these times, I felt very alone. I didn't know anyone else with autism and my friend's children didn't display these challenging and inappropriate behaviours which all the more made me feel very isolated and that I was the only person in the whole wide world experiencing this life.

As time went on and became involved in autism groups and charities, I realised that of course I wasn't the only parent experiencing and feeling like this - there really were other parents out there like me.
It was then that I started to think along the lines of starting a blog.
If during those early days, I could read a parent's blog like this one then I know it would have been a comfort to me.
I would have known that I wasn't the only parent trying to get my head around my unruly child, I would have felt less isolated and alone.

Not only that, I hope that I have raised awareness of autism to all kinds of people including parents of neuro-typical kids (children without autism).

I would like to thank you for reading my ramblings over the last twelve months.
This blog has generated over 10,000 page views as well as viewers from all over the world including the US, Germany, Denmark, Italy, Australia, China, Poland, Russia and France - I thank you all.

I hope you continue to read and support.

Thanking you all muchly

Love Mummy and DS


Thursday, 27 March 2014

Bring Josh Home....

I don't normally post anything about other families living with autism, I solely blog about my own and DS's but reading this story I just had to make a exception.

Josh is 13 year old with severe autism, he has to fight against the urge to self-injure himself. Quite often the injuries are potentially life threatening.

Josh was transferred to a assessment and treatment unit in Birmingham for a period of 6 months (his family live 260 miles away in Cornwall) nearly two years later Josh is still in the unit.

Josh's family are fighting to get the right care and support for him nearer to home but as us parents of autism know all too well, fighting the system and fighting for services for our children is a very hard and drawn out slog!

Dad Phill has set up a petition for support and services to be put in place not only for Josh but for other children too and so they bring him home.

Please read his story and watch the video of the gorgeous Josh

This story is heartbreaking, I cried my eyes out when I read it as this could be anyone of us and any one of our special children.

No child should *unnecessarily be away from home and their family and no child should be without a hug and cuddle when they need it.

Please sign this petition and together lets help this family get their beautiful boy back.

*(please note that I am in no way saying that children/adults with ASD should be not live away from home, I'm am saying unnecessarily as I acknowledge there are plenty of reasons why children/young adults are unable to live with their family and for a variety of practical, health and safety reasons. The point I am making that in this particular case, it is unneccessarily, I am not generalising  all autism scenarios - just to be clear)

Saturday, 15 March 2014

Can we fix it?.....Er no love, not a chance....

"They don't make them like they use to" is a phrase I often hear from some of my (older!) family members.

Maybe they have a point!

I have literally lost count of things/stuff/furniture that DS has broken over the years.
When I say broken, I mean several things here such as yes broken during horrific meltdowns so by stuff being thrashed about against walls, floors, my head.....

Some stuff has been broken when he has just got a bit frustrated because a toy hasn't done something he expected it to do or it hasn't played a tune he likes quick enough!
Some stuff has broken because DS was happily playing, maybe a little too rough....or maybe its broken because its not a toy and DS was using it in a way that it shouldn't be supposed to be used such as crawling along a shelf!!

As you can imagine at nearly 7 years old his weight was a bit much for this poor shelf with DS ending up in the sink! (Please note the red splatters in the pic is not blood!!)

Lesson learnt here: Remove all shelving from house to avoid future climbing and crawling expeditions!

This one happened today!...

Just a innocent game of hide and seek resulting in this wardrobe being trashed! I wasn't actually in the room when this happened as I was the one 'seeking' DS so can't say for sure how the door came to be in three pieces and lying on the floor with DS sitting inside.....(but DS assures me with a look of pure innocence that it did just literally fall off!)

Lesson learnt here: Wardrobes are rubbish places to hide if the doors are going to 'fall off' resulting in the 'hiding' person being exposed and losing the game! Wardbrobe manufacturers needs to take these games into consideration when designing and building their furniture.....;)

And lastly, flooding the bathroom seems to be our daily fun...

Bath water (and the bubbles) are thrown out of the bath onto the floor with the water seeping through the ceiling to the floor below! DS seems to get some fantastic (but very un-fantastic for me and poor overworked mop!) sensory feedback from this.
This is a hard one as I can't seem to get round this one. As its sensory related and with DS being a very sensory boy its certainly a toughy!

Lesson learnt here: Haven't a clue....erm.....move into a bungalow....?

Who else has had to 'autism proof' their home? As DS is getting older and taller I'm finding that I am having to up the 'proofing' around the place.....I can another five years, we will be living in just a shell of a house!............. ;)

Have a good weekend x