One Year Old Blog!

One year ago I sat down and decided to put into words what life for my family is really like.

The truth of raising an autistic child ; from the sad and frustrating to the funny and uplifting.

I am aware my blog has reached many many different countries such as Belarus, Germany, China, The UAE, Australia, Canada, Russia, Slovenia, Hungary, Indonesia, France, India and the USA.

Thank you for reading my blog and for coming back again and again.

                                                               Here is to another year!

Au Revoir Super Moon ( don't hurry back.)

So this was the moon that caused the manic noises, flapping flapping flapping, almost zero sleep, and restless marching up and down.
I won't mention the WWII bombs that were discovered a few miles away up the coast from us thanks to the super moon and it's extra strong effect on the tides.
To me it will be remembered as that week that saw J become so unsettled it eventually affected all of us in the family, the dogs included ; as they were subjected to J and his over zealous cuddles and neck holds.
It is a different story this week thank goodness.
Still the sleep problems, but then we have had that for as long as my (very tired and adled) brain can remember.
There were of course the sceptics who wanted their name in print in various publications, but then they (as far as I was made aware) do not have an autistic child and therefore can not stake claim to pour scorn on the super moon and it's effects.
Every full moon sees a marked decline in his behaviour as I have blogged before, so it is with much gratefullness that the supermoon is not a monthly or even yearly occurance. I think Clairol Blonde would sell out to cover the grey I would grow from the stress.

Creativity with liquid

A blog from last year mentioned J and his like of chucking liquid onto the patio in the back garden, stomping through it and making patterns with his foot prints.
Recently he has taken to doing this indoors, namely ,( and thankfully) in the kitchen.
At first I thought it was an accident and he had dropped it by mistake, but I caught him today, mid act, with a cup full of water and a wild carefree chucking motion with his arm.
He was smirking (the facial expression was a smirk, but I am pretty sure he does not know this actual emotion and therefore it is not a proper smirk) and laughing, but I made him clean it up.
Not much fun in it then is there? Being made to wipe it all up with kitchen roll.
I could label it as creativity I suppose. I could invest in a large blank canvas, kit out a room with protective covers, buy some paint, and let him loose with his feet, his hands and his mind to produce a masterpiece.
I could sell it for a profit and turn the second floor conversion into a sound proof haven for him, where he can stomp around, singing his Bear songs in Brazilian, and have time out from the hustle and bustle of his brothers and dogs.
I shall await a call from Bonhams.....

Lights. Camera. Action.

Oh dear. J has now discovered the video element on the I Phone.
So not only do I have a stream of hundreds of repetitive photos of his hand up at his mouth and the sole of his foot (no I don't know why either) I now have three second clips of him making various noises and replaying them back over and over again.
I spend my time deleting these images and clips so as not to block my memory up and also as whenever I come to upload photos to which I have taken, if I have'nt checked prior to connecting the wire to the laptop, I find me being prompted to upload 234 images instead of the four I was expecting.
Perhaps he will keep this interest for the future and capture his thoughts inside of his head and let all of us, especially me, see what he is thinking and feeling.
If you zoom through his captured images it is almost like an old 'talkie' movie and is quite artistic in it's own right!

Little clues from the past

You know when you read about autism and the tell tale signs, do you ever look back to when your child was a baby and toddler, before perhaps you became worried (or other people/professionals told you they felt something was not quite right) and realise there were signs?

With J being my first born I was a little green in parenting. Yes I had the books and the parenting magazines to read, but there is always a get out clause of 'every child is different and reached milestones at different times'.
I found a parenting style all by myself which felt natural to me and fitted well for J too. At that time there was no name for it but nowadays it is called 'attached parenting' or 'AP'. I do not adhere to every 'AP' mantra however as I found my own groove without reading about it first.

I remember clearly one cloud free blue sky spring morning, out walking the dog (not with us now) and pushing J in his pushchair, and a plane went over us, making noises, and I said "look J a plane" and pointed. He had no interest. He did'nt look up to see what the noise was or at my pointing.
At the time I thought it strange as my book said they would be very interested in their surroundings and look to things being pointed at or that made noises. But, I had no knowledge of autism and so the thought it was a little odd never took issue with me.

When he was a toddler he loved to stack VHS tapes (not that long ago were they?!!) up in to a giant tower. Over and over again, day in day out he loved doing that.
The same for wooden bricks.

Another gem gleamed from the books was that he should notice if I was wearing a hat or a towel on my head. He could'nt have cared less and took no notice or even seemed bothered. Just the other day baby W looked perturbed by my towel on my washed hair and was unsure it was me until I spoke to which he grinned - and my heart went "phew, another positive sign that he is not autistic",

J never had a temper tantrum. Never. He was placid and accepting of everything. He was'nt bothered if he lost a toy. He sure has made up for it now though with his meltdowns.

He was able to complete a 26 piece 'lift out' alphabet puzzle (sometimes 25 piece if the dog had gotten hold of it) in record time. He could do it upside down as well. I used to say to people who watched him to look how he scanned every piece on the floor and just zipped through picking them up and placing them in their respective holes. This was at age eighteen months!

He never put his arms out to be picked up. He never made noises as if to say he wanted to be picked up.

He never pointed.

At around twenty months old he went for a hearing test as we thought he was deaf by his lack of communication and lack of awareness to being spoken to. He passed.

He never liked to share an activity. Not share as in turn taking rather looking at a book together or helping me to do something. He hated looking at books with anyone in fact. He would walk away from you if you tried to join in in what he was looking at.

One day I was carrying a friends child who was two days younger than he was and they were nearly two years old. I was talking to this child and they made noises and facial gestures that implied to me they understood me or at least acknowledged me. It struck me then that J was not doing that at all.

Then after that it becomes hazy as we moved and saw different professionals, but one incident which stays with me was around the age of two years and three months, when, at a toddler group for lonely mums, a lady whose job it was to befriend us newbies asked me about J. I explained he was going to see a paediatrician and she said "oh I expect it's autism". I said "no, no, it's not that", even though I did'nt know what it was! I was shocked she had made a claim and I did'nt know about it and I was in denial that he had anything more serious than just a lack of communication - nothing a bit of the impending speech therapy would'nt cure (!).

Unfortunately, when you have a first born with autism, you look at your next children with close inspection and manic fears.
When pregnant with O and J was still at the assessment centre (even though we all knew it was autism by then) I had found out O was a boy. This opened the floodgates to those around us in the autism world that this baby would have a one in four chance of having it too, how did I feel about having another boy (?) etcetera.
O was watched by me closely for signs. But, as if to reassure me, from such a young age as well, he did everything 'normal'. At aged four weeks he hated being in his pram and loved to be carried up right to see around him. He pointed at ducks, and dogs, and planes and lorries when sitting up in his pushchair.
He grunted and squeaked when he wanted something. He loved to look at books with us and shared the story without crawling / walking off.

Again, this time round with baby W I got the comments on having another boy. The risks.
And yes I am on high alert for the 'signs'. But, even with his sight condition, he is reaching out, not pointing as such, but the hand is going in the direction of something he sees and wants to touch. He notices me wearing my glasses and will grin and swipe them off with the speed of a leopard.

Time will tell of course but naturally I am hoping he is another O and goes on to prove to me he is.

Disabled People Against Cuts - A link I have found

I have come across this website via Facebook which I think is a very good idea and is enabling all who are disabled to have their voice heard even if they can not go on an actual protest march.

There is apparently a march occuring on the 26th March and all those who are armchair bound, wheel chair bound or perhaps are parents like myself who would find it impossible to attend due to the nature of my childs disability and the fact I have two other children to care for too.

http://www.dpac.uk.net/2011/03/in-solidarity-with-the-protesters-on-the-streets-on-26-march-online-map-disabled-people-and-allies/

There is a virtual map on this site and all those who sign up for it get a 'pin' on the map for their location.
The idea is to show that there are plenty more voices shouting out "No!" to the proposed cuts to the disabled community. As a parent who is directly affected by these proposals and who is already experiencing a lack of support from the professional body in our area, further cuts would be disasterous.

Get your voice heard!

The Vase and the Wee

Do you remember me blogging about J and his inapropriate weeing?
In the garden and on the landing carpet? Not the complete missing of the toilet bowl though.
Well the other day I saw something but did'nt really put two and two together.
I called J down stairs and he walked over to the tall but empty floor vase we have by the front door. It stands at a round a metre high off of the floor.
He goes to touch his private area and I tell him "hands off" - he is touching himself a lot recently and may well be puberty starting.
Fast forward to this morning and I am standing by the front door talking on the phone when I can smell urine.
I look down and see liquid floating in the vase. I move it slightly and there is liquid under as well.
It is most definately urine.
So he has now started using this as a toilet? I hope not!
There will be a 'talk' later ; me telling him "no J" as I point to the vase, "no wee wee". He will repeat back to me "Noooooo J" and let us hope that is the end of that.

What a great idea!

There is a woman in Dorset who took her redundancy money and used it to create positive roles for people with learning difficulties.
Instead of paying off her mortgage or saving it for her retirement, this woman, Jill Symes, bought a cafe (so an investment of sorts but still a risk in this economic down turn) and now employs these adults, so as to give them the ability to learn social and life skills.
Ms Symes used to teach at a local college for young people with learning difficulties so knew first hand the positive effect of having a job that enables them to mix in society and learn more.
The cafe is called Poundbury's Cafe which is located on The Green.
There are signs out for customers asking them for patience - something we all seem to lack nowadays.
According to a newspaper columnist who has written about this cafe, she saw one of the young female staff members the next day whilst out shopping, and this girl and her friend were buying themselves some handbags, with their own money for which they earnt for their work in the cafe.
Ms Symes (and her daughter Kelly) are providing a positive experience for everyone here - the staff, their families, the customers, and the rest of society who will read about this.

I wondered what role J could have, when old enough, to work in a cafe environment.
Serving the drinks would be a problem as he would be helping himself to the cola all day long.
Serving food which smells (pretty much all food then!) would make him gag, unless it was chips and then he'd be eating them.
He would be good at filling up the dishwasher though, and emptying it.
A little bit of direction and a lot of repetitivness and he'd love it.

Well done to Ms Symes and thank you for bringing our special young adults into the fore and proving that they should never be written off or forgotten about.

To sleep or not to sleep

The sleep issues that still plague J have had me pondering.
Being pushed back and forth between the GP and the paediatrician with both saying it is the others responsibility is not getting us anywhere.
There is a 'sleep clinic' in operation in our area, but as I have accessed this kind of service previously in Cheshire I am all too aware of the time wasting, paper pushing, form filling that you have to do for them, before they will look at medical ways in helping your child.
Filling out daily diaries with exercise activites, routines and timings for bed is time consuming and not practical when you have more than one child. These diaries are requested over a number of weeks so as the 'sleep clininc' team can assess and try to find a pattern.
However, all to often there is no pattern that is discernible enough to warrant a simple change in routine.
Parents who are seeking the final step for helping their child to sleep (IE medication) have exhausted all avenues of reasoning and have tried all suggestions and methods.
Medication is the answer.
Why then, is it hit and miss as to who is prescribed it?
Surely a child who is sleeping four hours a night is not sleeping enough?
Oh I have heard the classic line of " special needs children don't need as much sleep as neurotypical children" many a time from the medical field, but when the child is presenting with dark circles under the eyes, poor health, behaviour issues, yawning in the day and lethargy towards activites, surely these are signs that the sleep (or lack of it) issue is affecting not just the family but the child?
Melatonin is a popular prescription drug and is a naturally occuring substance within the brain. It encourages sleepiness and if not produced enough by the childs brain can cause problems in getting off to sleep as well as maintaining sleep through the night.
If this is a naturally occuring hormone in the body and is available on prescription, why is it treated as gold dust? There are other stronger sleep inducing medications out there prescribed for children, but this basic starter is very hard to aquire it seems.

If a child can not get off to sleep until very late, wakes in the night, and is often very lethargic in the morning due to the lack of sleep, would this constitute a form of negligence from the medical professionals? If it is affecting his day to day life and physicality? I am not talking about the impact it has on myself and the rest of my family either, simply J and his body and well being.
How can months of form filling be deemed acceptable when it has already been done by me?

Oh and let us not forget that to actually meet with the 'sleep clininc' initially is a wait. Another waiting list.

My GP told me to give him an over the counter drug for allergies called Piriton. Apparently this foul tasting liquid can have a sedative effect. I tried it on him and apart from gagging on it (I did too and that was only through smelling it) it had no other effect.
It appears fine to medicate him with a drug designed for allergies but not a naturally occuring drug.
My GP has no knowledge of prescribing melatonin apparently so would not do so.
I did mention that online pharmacies sell it from abroad (usually the USA) and that I think it dangerous that with all the fobbing off I get from professionals I could easily input my credit card details and send off for some bottles of the stuff immeadiatly - never mind that they may be dangerously formulated.

So perhaps I should push again for another try at actually seeing someone who can prescribe a medicine and not a questionaire.

Marmite tee shirt

Marmite. J loves it. He'll have it on toast, on crumpets, on crackers and in sandwiches.
So, out shopping for him the other day, as he had deliberately ripped his coat up along the seams, I spotted a Marmite tee shirt in the famous Andy Warhol design of four images, all the same, but each a different colour.
And, after showing it to him he now will not take it off unless it is school uniform.
I have to turn the washing and drying around in the hours he is at school so it is ready and folded back in his drawer.
I might buy another one at this rate so as to have it in stock.
As he is in adult male size tops now the choice is limited a little as a lot have silly puns on them, racey messages, or promoting activities desginated for adults such as drinking.
So finding the Marmite tee shirt was a bonus and I'm pleased he likes it so much!

J and his Memory

J is very clever with his eyes. He will observe happenings and catalogue them in his head to be used and remembered at a later date.
For this reason I have to watch out myself for him lurking in corners spying where I hide the 'star lock' key. This key is a magic key that opens doors to his favourite rooms - the kitchen and the downstairs utility room and toilet/shower room.
It is a one key fits all star locks and so it saves the hassle of ever having to have spare keys cut or panic about losing them as they are easily bought from any hardware store.
I do have several over the house in their respective hiding places, but it is when I am in a rush and not thinking that he spies where I have hidden it. My first knowledge of this fact is when I either see him with Nutella spread all around his mouth or I can hear him opening and shutting cupboards trying to find his food.

Another catalogued incident is when he thinks we are going to our static caravan holiday home.
He is very keen to only wear his pyjamas around the house as of late and so when he sees me packing the box to go away he will change purposefully into his day clothes and carry his pyjamas around with him, ready to get into the car. If I pack them for him he will remove them as he needs to carry them.
The second we arrive at the caravan he is in the bedroom undressing and re-dressing back into his pyjamas.

Sometimes he mistakes us all getting ready to go out at the weekend for us going to the caravan and he can get quite upset when I remove them from his possession.

He loves the caravan park as it is set in a forest and is not commercialised with amusement parks, fairgrounds, loud music, shops etecetera. It is a quiet, but fairly large park and we have huge tall trees all around us, with woodpeckers pecking, magpies squawking, and squirrels scampering up the trunks to the tall willowy branches that spread with panoramic views.
There is nothing chavvy about our caravan with its gas central heating, double glazing, en suite, fully fitted kitchen, movable sofa and chairs, king sized bed and its gorgeous location!
It is tranquil and peaceful and he spends his days playing on my I Phone and relaxing on the decking which spans the length and width of the caravan and is accessed by the patio doors in the lounge or the front door in the diner.

His most favourite thing about the caravan park is that it is near a McDonald's, and anyone who knows J or remembers my blogs from a year ago will testify, he loves "cola chips". The boy asks for them all day long. He knows it is just over the road, past the roundabout, take a right and a left, and you are there!
McDonald's location managers must hear where we are going to and build stores just so J is never too far away from his beloved, if weekly treated favourite fast food eatery!

J and his friend

J does not form friendships in the conventional sense. He does not seek friendship and companionship.
He has no interest in participating in a group activity, preferring to be solo.
He has always played alone and has never requested anyone to join him.
It is sad at times when he is approached by other children in the park and he ignores them, and I have to intervene and excuse him, usually by keeping it simple for them to understand.
I am used to his solitary existence after years of it with him.
It is part and parcel of his autism and learning difficulties.

However, over the years at school, he has developed a fondness if you like for certain other pupils in his class.
His classes are small with only six to eight students and three to four staff.
He had made a kind of bond with one student before he moved class and would echolalia her name over and over again, both in its fullest form and its abbreviated form.

Now he is in a new class, and has been since September, I knew two of the boys in his class via other services, but it was a surprise to hear from his teacher at parents evening that he is very upset whenever a certain pupil, a girl named A, is removed from class to have some 'time out'. She can become, like J, very upset over what we would deem the smallest thing, and has to have one to one with a staff member, away from the classroom.
On one of her upsets she was taken off. J became very distressed and was calling her name over and over again, crying, pacing, and not able to settle.
The staff choose to take him along to the room A was in and show him she was fine and happy and was working away in peace and quiet.
He was placated by this and now they have to follow this procedure with him every time as he still becomes so very distressed at her leaving.

It shows bonds can be formed with peers, albeit in a non communicative ( you know he does'nt talk apart from echolalia) manner, and that he does have feelings and emotions for others even though he is unable to express it verbally or in the 'normal' way of play.
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The Head Banger Continues

With this head banging that J does, I got to thinking last night about the effects on his brain, his skull, his skin and his health, that constant and hard head banging must affect them.
I was told by the psychologist that I should ignore his head banging ; that it gives him a reaction which will encourage him to do it again.
He head banged around December of 2009 and then it died off. He took it up again around November/December of 2010 and even though for a time it appeared he had stopped, he had'nt and the intensity of his banging is quite voracious.

I have Googled the impact of repeated head banging, and it does not make for positive reading. There can be many negative implications, as expected, and I now feel that being told to ignore it is not actually the correct procedure, as he is doing some serious damage I believe.

He had blood shot eyes yesterday and I could only attribute that to the banging. He had no noxious substance that he could have wiped into his eyes, and coupled with him blinking his eyes repeatedly with a head flick, I am at a loss to find blame on anything else.

I reported the head banging to our GP so as to have a record of it and to try to prove that it is not in fact myself causing these injuries to his forehead but himself. The GP was, as seems to be more and more these days, non plussed and did'nt really bother to examine, investigate, question or probe further into it.
It is not a GP's field as they are as their title informs 'general practioners', so unless they had specialised in the field of autism and its ilk then they will not understand.

I am at a loss as to what to do. Our local service provider for special needs children really does'nt seem to have a clue either. Their service has been patchy and shoddy to say the least and to be honest, to have their resident psychologist come out to visit us, take notes of what I tell him, then tell me to ignore the behaviour seems a waste of time and effort.  We have been going round in circles with it and with them and I just do not see a way to make him stop.

He will not wear or tolerate those special helmets to prevent damage from head banging either. He is very capable of removing them, even if they are tricky or have many locks. And if it took him ten minutes to work out how to remove it, he will spend those ten minutes screaming and fighting and when it is finally off of his head he will head bang even more. Catch 22.

Nystagmus and the new baby

I was reminded the other day about how far we have come with J and his autism and W and his wobbly eyes (Nystagmus).
I know this blog is centred on J and our life with his autism, but as W is his little baby brother and a part of the family I feel I can traverse off course slightly and chat about him a little.

I met a woman the other day, through something to do with J, and I explained about W and his wobbly eyes. It can be off putting for people who do not know as they think he is looking wildly about his surroundings so to explain to them puts them at ease and then talk closer to him so he can see them.

I remember very vividly the day I began to worry about his eyes. He was around two and a half weeks old. His eyes only moved a few times side to side.back, and then stopped. But, from research I did on Google and a chat with my wonderful cousin K who is a junior doctor, Nystagmus became the next medical word which would dominate our life and change the course.

I have explained before in this blog about the reaction my doctor gave to me at our six week post-natal check and her laughing attitude that Nystagmus is a rare disability and he couldn't possibly have it.
I obviously sought a second opinion, had to pay for private consultations as the NHS in this area do not send babies off to be checked for vision problems until at least nine months old and then add on the (at least) ten month waiting list. He had an MRI scan to rule out a brain tumour, which is linked to vertical Nystagmus, which by seven weeks old he had also developed.

So, backing up to this meeting I had the other day, and after I had explained about his eyes, the woman mentioned her son who has similar eye presentation. But, she exclaimed, "he is only three weeks old, so it's too early I expect to tell". How do you tell someone that actually it is not too early, three weeks is when baby begins to explore their vision and this is when we start to notice problems.
How could I say that it was exactly the same with W? That his eyes did exactly what she was describing of her son?

I felt so sad. Sad that another baby has this condition. Another mother has to endure the initial stage of worry, disbelief, hope, and blame. That the sight is very unsure of at this young age. We have to wait until W is able to talk to me to tell me exactly how far he can see and how accurate he can see - blurry outlines from a distance?
W can see around a metre away. He responds to lights that far. His close up accuracy is good. He will grab noses, hair and glasses off of faces, and I have to warn people that just because he needs to have things closer to look at, it doesn't mean he isn't a typical baby and will yank at you with all his might!

I thought back to how quickly this past year has gone. How desperately sad I was last year at the thought of another child growing up with a disability in this world of fast paced, uncaring, thoughtless people.
How it had to be my fault he had this condition. How people will gossip about me having two children with (different) disabilities and how it had to be something I had done.

Now, after having the all clear from the MRI scan, we were able to move on in the knowledge that it would not kill him, but it would affect him his whole life.

Those parents have to start this journey. They have to deal with the emotions and upset. It is hard, but, a year on and we are progressing very well, and W is my amazing, beautiful, clever, funny, and spirited little boy, who has a mummy that will not stand for nonsense from the medical profession, and who will always fight for his rights, and love him endlessly.



UPDATE - 23/7/13
I have written two more posts since I wrote this above.
You can find them here -
Update on the toddler
The Baby is now Three!
First ever post about it - this was the first time I had written about it.

Biggest Full Moon for Twenty Years! Boy do we know it here!

With one week to go until the full moon I have to say J is mega hyper and restless.
He is a head banging, hand flapping, noise making, hysterical laughing whirlwind.
This is with seven days to go!
But the full moon is going to be the biggest it has been since two decades ago as it is at its closest to Earth.
It will be approximately 14% bigger in the sky.
It is at a distance of 221,567 miles in its elliptical orbit.
That 221,567 miles is making my son go super loco.
I can presume it will only become worse as the days get closer to it occuring, and goodness knows what he will be like on the actual night.

Glue hair

J has taken to gluing his hair.
The use of glue sticks such as Pritt now have a purpose beyond paper and card.
He has the skill to streak it in a line through from his nape to crown and almost resembles the lines of a skunk on his head.
Alas for him I always remove his hair work as he looks silly and it flakes in places resembling dandruff.
He performs this gluing both at home and at school and still has'nt worked out that he will always have his hair washed that evening, even though hair washing is one of his least favourite past times.
I wonder if he thinks gluing his hair will make it stay put so when I get the clippers out his hair is'nt lost to the floor and the hoover.

Hair cuts and nails

J has always had a fear of having his hair cut.
I used to do it when he was asleep, which was always very tricky, but at least it stopped the screaming and vomitting.
He is also the same about his nails.
I finally decided that he had to bite the bullet and have them cut when awake as he would wriggle his feet about, even though asleep, and it got quite precarious when I reached his little toe as I would worry I would catch his skin instead of the nail.

I purchased a hair grooming kit with a comb, clippers, scissors and mini shaver.
At first he went ballistic. Screaming "one more, one more". Coughing to make himself sick.
But, I restrained him enough to get a good going over of his hair. Unfortunately he kept on dodging the clippers and at one point he made me slip and take more hair off than I wanted so he ended up with a very short cut as I could'nt leave the hair looking like that!

Now, a few years down the line he will stand and is fairly calm. It is only when it comes to the front of his hair that he panics. He can see the hair falling down and touches his head worriedly. "One more,one more" is said often, but I do get a good haircut on him now.
I'll never take him to a barber shop as he'll panic even more and will not sit for someone coming at his head with clippers!

His nails also got the same shock treatment. I just went for it one day after building up the courage.
He kicked, scratched and screamed. I ended up sitting almost on his legs to restrain his movements.
Now, he accepts I will be cutting his nails and even though there are a few verbal protests and the odd snatching away of his hand or foot, he does let me do it.

I call this method ' learning by trauma'.

I spoke to the paediatrician about it and she agreed that sometimes it is just better to get on with it, deal with the trauma, the screaming, the hitting etcetera as most children quickly learn that their panic is unfounded and that it does'nt actually hurt them and is over quicker if they just comply.

There is no way I could ever explain to J that X is not going to hurt as his comprehension is zero in these matters. So for him it has to be the trauma route to discover the truth.

I think he believes that he is losing his hair or his nails and worries that they are gone forever, which technically those pieces are, but as time has progressed he can see for himself that they do grow back, and then have to be cut again. Occasionally I have seen him pick a nail clipping up and try to replace it onto his finger. But, for the most he is complient enough now to accept the situation and I can groom him properly to look clean and smart.

Bath time frolic

It's bathtime. I have washed Js hair. I have supervised him washing himself, with me directing and encouraging him.
I have removed the shampoo bottle and the shower gel ( as he will then sit and squirt the lot into the bath otherwise).
I pop into the other room to check the other boys are playing nicely together and to gather Js pyjamas from his drawer.
I return to the bathroom and wonder why J has white stuff in his hair. I search around for a bottle of something. Nothing. I touch his hair. I realise it is toilet tissue.
He has taken the roll from the side and put it into the bath with himself.
There is now floating toilet tissue covering the whole surface of the bath.
I attempt to rinse his hair with fresh water.
I make him get out of the bath.
And then I try to drain the bath.
It takes me twenty five minutes to clear it all from the plug hole and swishing it into a bucket and pouring it down the toilet.
The plug hole is not clearing water very well and I am there picking little bits of tissue out all the while trying to stop J from climbing back in.
I eventually get most of it out and then have to power jet the plug hole to make sure there is none hiding the other side of it.
I suppose I have to add toilet rolls to the list of things to hide from him. We will soon just have walls and doors in this house and nothing else!

One J and his dog

J 'over loves' Max, one of our dogs.
He will cuddle him very tightly, almost choking him, and tips his head back, snout in the air.
Max takes it all in his stride. He does'nt even get up and move elsewhere - perhaps because he knows J will just follow him and do the same there.
J does'nt do this to our other dog, Barney. Barney, although is a far worse attention seeking dog, and pushes his way past Max for anything, will not allow J to do this to him at all. He has growled before and J knows not to bother him.

Labradors are loving dogs. They are four legged dustbins. They can hoover the tiniest crumb up off of the floor and will wait endlessly by your side if they think the food you are eating will be passed on to them once you have finished.

Because of their dustbin like manner they hang around J when he eats. He will feed them the crusts of his toast. I have to keep them back as they literally follow him, snout millimetres away from his hand.

J calls dogs "Pippin". This is after Pippin the dog from the CBeebies programme 'Come Outside'. He does refer to them as "Max, Barney" when they are missing from his location, but generally it is "Pippin".

He will veer towards most dogs out walking with their owner and I have to pull him back as he will more than likely try to mount the larger dogs, rather like he was mounting a horse to ride. The smaller dogs get stroked, but rather roughly. So for this I would rather keep him back from them so as to keep the dogs and the owners happy.

It must be a compromise between Max and J. J can over love him as long as he gets more treats and scraps.

I Phone addict

Technology can be a wonderful thing.
J has loved using the special 'touch screen' computer at school for a while, but as it is fairly expensive it has been out of my reach financially to buy one.
I was upgraded by my mobile phone company recently to the I Phone 4. I have never had such a techno rich phone before - I usually had those simple little ones that had a crappy camera installed which made everything photograped appear to be under a veil of sand.
The I Phone has opened my eyes to much more. Yes I have accessed the internet for years via computer then laptop, but to have this thin small phone that enables access to the world wide web has been fantastic.

J has now adopted it, unoffically, as his. He can speed through YouTube and finds all his programmes that he loves to watch on DVD. Unfortunately for me he can play the same clip over and over again.
I have mentioned before of his love for Bear in the Big Blue House and now he views lots of clips. But, as it is the world wide web there are lots of dubbed clips, some a kind of mickey take, but others in foreign languages. He has been playing this one song, dubbed over in Brazilian, day in day out. I can sing along to it now, so if ever a Brazilian tourist needs an interpreter, I can provide a good rendition of Bears song 'Opposites' for them. I am sure they will really appreciate my effort.

We have watched the TeleTubbies in French and Aunty Mabel flying her spotty plane with a made up narrative over the top of the VT.
There was even a homemade clip, made for someones girlfriend/friend called Fimbo, with the Fimbles theme tune running over photos over her.
J loves them all.

I looked at getting him an I Pad so as my phone stays my phone, but they are so expensive!
I have found something called an E Tablet (yes very 1990 I thought so too) made by Elonex. It costs around £89 for the 7inch screen version or £149 for the 10inch version. It enables Youtube and other social sites to be used with ease, has the same touch screen technology as the I Pad/Phone, and connects to WIFI.

I am hoping to be able to afford it soon as he spends every minute on my phone now and is so much more calm in the house with less aimless wandering and noises. He sings along, albeit not word perfect with his language problems, and is a happy boy to be around.

Do we have it too?

Do you have a quirk?
A little thing that you do. That you have to do?
A routine?
I was once told by a pshycologist that nearly all humans display some form of spectrum behaviour.

My quirks, (plural I hasten to add) involve food, numbers and placing.

I have favourite foods. I tend to be quite boring and stick to them. I am not adventurous when cooking for myself, but will be flamboyant when cooking for others, almost compensating for my lack of eating motivation.
I am not a skinny minnie though. I do eat the wrong foods and coupled with a severely under active thyroid for which I take a lot of medicines for I am never going to be a size zero (but who wants to be truthfully? - bones and cold skin with veins popping through is not attractive in my opinion).

I like the number five and will purposefully count that number out when doing something or dividing up shares.

Placing involves me always having to have the plate on the far right! Very weird, but very true. And yes, if I am given a plate from the side (with the food dished up on it ready to take to the table) that is not the far right I get quite agitated.
My hubby knows this and it is second nature for him now.

I do find it hard in social settings. I am a very self concious person and perceptive of others and their opinions and body language. I sometimes feel I should keep quiet as I am not sure if I will fit in and don't want to be made fun of or ignored.

At school I had to finish my homework ASAP. Sometimes I would complete the morning work during the lunch hour and it was quite common for me to complete the set class work and be told to go onto my homework as I had so much time left before class ended. I also did not have to take part in P.E during secondary school as I have fallen arches on my feet which cause muscle spasms and my feet seize up making even walking hard. I had years of physio, drugs, injections into the soles of my feet (very painfull indeed), built in steps into my shoes and plaster casts made of my foot shape. I used this free time to study.
If I still had some left over I had to finish it the second I was home. I just could not relax until it was done.

I may have slight traits. Or I may just be odd. But at least I have accepted my weirdness and embraced it!

Inherited Autism?

With the many research institutes trying to find the cause and the cure to autism I have looked back into my family history.

There are always tales from Grandparents of 'Great Uncle So and So' who was 'eccentric' and a little 'odd' within most families. But for most of us, having never met Uncle So and So we can only go on what we are told and make our own minds up.

My own Grandfather (1929-2007) was always a little bit auty. Not that I knew that at the time. No, it's only since my journey on the autism highway have I begun to see traits within him which are synonymous with high functioning autism or Aspergers. I grew up living in his house with him, my grandma and my mum.

He had written records (all his own writing) recorded in hard backed lined exercise books of every Premier Football match score result. I mean every single one. Every single week it was on. He had stacks of these books stored away in his attic. He had done this for years and years and years.
Now this may just have been a hobby. A very keen hobby. So let me tell you some more....

He loved numbers. He loved manipulating them. He loved problem solving equations.
To him numbers were fun and made sense. He gained a lot of enjoyment through his numbers.

He was a very family orientated man. He preferred the company of himself or his close family to friends and aquaintences.
He was very quiet in social settings almost looking uncomfortable and out of place.
He often said he let his wife do the talking for him.

Some would say he did'nt think before he spoke a lot of the time. He could say something quite hurtful but without actually meaning to be hurtful. He either just said the truth without sugar coating it or just forgot to think about what he was about to say. I received a few of these hurtful things (which I knew was his mouth running away with him rather than spite), one of which was to do with my  being unmarried when I fell pregnant with J. I did subsequently marry when seven months pregnant with J, but not due to the comment he passed over to me.

He liked routine and order in his life. If it veered off slightly he could become antsy and miserable.

Now with all of what I have written I have not come to the best part of him. His loyalty and love for his family. He worked damn hard throughout his life (as an accountant - see numbers again!) and always made sure his wife and children where provided with anything they needed.
He secretly donated money every year to charities ( quite large sums) and never wanted people to know - I only found out after his death.
He gave lump sums of money to each of us every year.
He found it hard to express himself and his feelings in a verbal way and so the monetary method seemed to work for him (but do not take that as him buying affection  please).

I do believe he was on the Spectrum from my evaluation and am glad he had a happy fulfilled life.

The Shower Gel incident

I bought some Original Source Lime Shower Gel a few weeks back.
I had used it a couple times and as J is a serial squeezer of all tubes and bottles containing gloopy subtances I had hidden it high up in the bathroom, behind objects.
So I spy it the other day and get it down to use.
I notice the bottle is quite swollen, almost bursting.
I then notice there is a brown tinge running along one side of the bottle, on the inside of it, within the green gel.
I decide to put it in the bin and presume it has a preservative problem which has gone off.
Later that day I can smell lime quite strongly in the house.
I go into the bathroom and see that there is gel all over the floor and fish the bottle out of the bin.
The lid has come off with the force of the content pressure which was making the bottle bulge.
I pick the bottle up and as it is now transparent due to all the green lime gel being over my floor, I notice something very odd inside.
Very odd indeed.
It was an AA battery.
So, it had leaked acid into the gel which in turn made it explode.

But how had it got there? Was it a factory fault?
Well, I checked the battery out and it is the same brand that I have used recently in the house.

So I can only presume that J took it upon himself to open the main lid up, insert the battery, close the lid and put it back in its hiding place.

I am just glad I noticed the changes in the bottle as I am not sure if it would have burnt my skin on contact.

Oh the mysterious world he lives in. Why a battery inside a shower gel? One day it may become clear.

National Autistic Society Campaign - Your Voice is Needed NOW!

There is a new campaign running in which the NAS are asking us to email our local MP to tell them why we need the DLA (Disability Living Allowance) to not be cut for adults with autism.
I have already clicked the link they sent me via email, and it only took me a few minutes to complete.
The NAS send it on to your relevant MP so there is no worry about having to try to find their email address for yourself.

The link is as follows -
http://e-activist.com/ea-campaign/clientcampaign.do?ea.client.id=10&ea.campaign.id=9629&ea.param.extras=URLTracking:campaignemail

You have a chance to express your own personal reasons for asking for this vital benefit not to be scrapped.
You also have a chance to do something positive. It is not too much of an effort to click, type and click.
Those precious few minutes of your time will make a difference.

I mentioned in my message that autistics do not become cured or grow out of autism the day they turn 18 years old.
Just because an autist reaches adulthood, it does not change the fact they have a life long disability.

My J will still need me to hold his hand when he is thirty years old and we are crossing the road.

He will still need me to ensure his personal hygiene when he is forty years old.

He will always need someone to be with him, day and night, even when he is fifty years old.

He will not become conversant and will still need me to speak up for him when he is sixty years old.

Why are this government hell bent on destroying our disabled community?
Are they attempting to take us back to the time when we locked them all up - 'out of sight,out of mind'. Where they cannot access the community. Where they live a poor (monetary poor) existence with no luxuries, treats or time away from the home.
Or are they so bloody minded and ill informed that they think because (for the most) autists look 'normal' on the outside, the disability is over hyped, over blown and we are all just over exaggerating?

So go on, please, just click the link (or copy and paste into your bar at the top of your page). If everyone stands up and shouts they will have to listen.

I can assure you the link is correct (at the time of blogging, a few months/years it may have expired) and is not a spoof, a fake, a virus or anything so nasty.