Saturday, 31 August 2013

First Day Nerves

Nerves have set in for me. It's four days until J starts at his new school.
My main worries are to do with the staff not understanding him, and his quirks, and creating stressful situations that could have been avoided if they knew what his triggers are, or how to calm him.

Yes I understand they are trained to work with older children/teenagers with moderate to severe learning difficulties, but each child is different. As J cannot communicate effectively or appropriately, there will be situations arising.

I am contemplating jotting some things down for his teacher. Information such as ;

* His dislike or being frightened of something, when he says "goodbye ..............".

* His penchant for not wearing underwear - this has been occurring for over two years now...
See This Post here for the first time I blogged about it.
I have been reassured by a few people, that it is quite common, and is a sensory issue. I have tried him with different styles, and only buy 100% cotton, but he removes them instantly.
I am fairly relaxed about it really, and know that in the bigger picture, it really doesn't feature very highly as a major problem, so I am hoping that my laid back approach will reward me with him one day just deciding to wear them again. This approach has proved me right before and seems to work for us.

*His need to be free to attend bathroom breaks as and when he requires it. - The school state that children are requested to wait for break time to go to the bathroom, but this being a special school, I find this not appropriate and a little misguided. It is, after all, not a mainstream school. J again has sensory issues relating to his bladder, not medical, and to deny him a bathroom break is going against his needs, in my opinion.

The first week will be tense for me, I know that for sure. As for J, if his stress triggers are kept to a minimum, he will settle in well.

Monday, 26 August 2013

The Boy and his Rocking Chair

J has a new pastime which seems to calm him. He sits in his wooden rocking chair, which is by his bedroom window, pulls the net curtain to the side, and rocks away whilst looking at the cars driving past, the people ambling up and down the pavement, the trees, full of leaves, swishing in the breeze, and the occasional teenager on a moped speeding past, making more noise than a jumbo jet, but with the amount of power of a hairdryer.
He sits there for a good half an hour, just rocking back and forth, looking outside.
He even gets his 'sleepy' which is his word for his bed cover, and covers his lap over! He looks so lovely like that, albeit like an elderly man!
I bought the rocking chair a few years ago on eBay. I won it in an auction for 7.55 and it was local to me too. Such a bargain!

I wrote a while ago about the windows in his bedroom being tinted, so the light comes in, but people cannot see in very clearly.
When I had the windows double glazed a while back I asked if they could make his tinted, and they did, and not with those awful plastic sheets that you can buy online, that crinkle and bubble the second a centimetre of it touches a window pane, but a proper tinted window.

I had tried those tinted sheets prior to the double glazing, and despite reading so many negative reviews about them, I was desperate to obscure the view into his bedroom, mainly because of his propensity to wander naked around his room, after a bath or shower, and not understand that curtains should be closed, and definitely no lights should be on, making it more visible for outside to see in.

Once I had saved enough money I was able to double glaze the whole house, and gone were the draughty nights in winter, where the curtains would sway, and icicles grew on the inside of the glass!

So when he sits and rocks, and watches the world go by, I know our neighbours opposite won't think he is being a nosey Norman, as they won't be able to see him.

I first wrote about my tinted window idea here - Tinted Windows 6th May 2010
and then here - Windows 31st July 2010

Sunday, 25 August 2013


Here's another drawing I found on J's magnetic drawer. As I scrambled to find my iPhone to take a photo of it, he appeared. I asked him what it is, in the way I always ask him, by pointing directly at the picture and saying "what's this J?". He replied - "spoons".
So there you go, another masterpiece created - irony intended - and it's of spoons! Perhaps he was feeling hungry when he drew them, only he knows, and it's all inside his active and very clever, but silent, brain.

Wednesday, 21 August 2013

The Autistic Personality of My Boy

I was asked the other day if I felt sad that my Boy has no personality, as he is unable to communicate effectively, and lives in a 'bubble'. As I always do, when greeted by this kind of question, I didn't get angry, or rude, as I am trying to educate people, not intimidate.
I explained he has a very cheeky side to him, and when something makes him giggle, it is a joy to hear and see.

Here are a few examples of the funny and sweet side of my Boy -

>) When he asks for certain food items he loves eating, and I refuse him, he will try and ask again, but in a different tone. He changes from a sing-song kind of voice, to a deep voice, a small voice etc.
This is a video link to YouTube that has Marjorie Dawes from the BBC programme Little Britain.
This is her talking about cake. If you like the show you will get what I am on about, if not, watch the clip. The way she says "cake" throughout this sketch is so similar to the way J asks for food! Marjorie Dawes - Cake

>) J had a very special bond with a girl at his old school. She moved to the school he is starting at in September, last year, as she is a year older than him.
He has seen her on his transition visits, and I know they will become close again. During the school day, if she became stressed, she would be taken to a quiet room with a staff member, and allowed some down time. J would then become upset that she had gone. Both J and A, the girl in question, have very similar autistic traits, and learning and communication difficulties. I think that is why they are soul mates. They 'get' each other in a world where they find it so hard to live in.
A staff member would take him down to the quiet room and show him that A was there.
This simple act helped him calm down, as he then knew she hadn't disappeared.

>) I was talking to a member of staff from his class a few weeks ago, and she told me her memory of J would always be of the boy that could charm the ladies. She told me she saw him sitting under a tree, right next to the girl, A, and she was gazing at him adoringly, whilst he had one shoe and sock off, and was biting his toenails! Ewww! But it still makes me laugh at the image this conjured up.

>) Back to food - the big love of J's life ;
At school, during snack time, if it was toast, J would line up with the other five or six children in his class, and get his slice with Marmite on. Each child would have one slice. J however loves toast. So he would re-join the queue and almost behave blasé about it, as if he wasn't really trying to get another slice. His cheeky nature showing there!

>) At school as well, in the classroom, each child had a water bottle with their name on. It would stay in school and would be refilled every day.
J one day took responsibility for this, instead of one of the staff members.
He would fill up each bottle with water, and place them back in the crate, where they were kept.
If a child was not in school that morning, he would not fill up their bottle.
Now there are two really positive points to this ;

1) The water bottles were all the same colour and design. The child's name was written in a black marker pen along the body of the bottle. J, despite having major communication problems, could differentiate each name, and so he always filled the right bottles up.
2) He may appear to be in his own world, or 'bubble', but he is very aware of his surroundings and of those that enter or leave it, and by not filling up an absent classmate's bottle, he shows awareness and logic.

So in response to the question I was asked, I demonstrated that J does have a personality, it is just more subtle than belting out tunes from a Broadway show, or giving an inspiring performance of The Merchant of Venice!

Tuesday, 20 August 2013

A Letter of Hate from a Neighbour.......

This letter has been circulating Facebook over the last 24 hours.
Have a read of it. If you click the photo it will enlarge for you.
According to the person who has been asking for 'shares' of this, she found this letter on an online forum, and was posted up by a mum in Canada.
I do not know if this is a genuine letter, or one created by someone looking for attention and fame on the internet. Even if it is a spoof, the points raised from the words written are experienced daily by parents of children with special needs, so it is still raising awareness of the hate we receive from the public. Have a read and make your own mind up.
Update  ----- This has now made world wide news, and according to some reports, Ontario police are investigating the origins of the letter, and are looking at it as a 'hate crime'.

I claim no ownership to this letter, however it has been spread via the 'share' button on Facebook, so has become of interest to the public.

Thursday, 15 August 2013

Storymaker Drawings and Attention to Detail

I found these drawings J did one afternoon. They are of the characters from the children's television programme from a few years ago, called the Storymakers.

I have made a post about this before, showing another of his drawings of these characters. You can see this here, at the bottom of this post link  - The Future's Bright
The reason the figures drawn in black, change appearances slightly is due to that character being played by different actors. But in the bottom left drawing he has changed the actor and the pink puppet, Jackson, around, so Jackson is now drawn in black, whilst the human character is in pink.
Jelly's hair always gets drawn going outwards and Jackson's is always drawn standing upwards.

                        These are the characters from the show.

I managed to salvage two of the drawings just as he was screwing the papers up. I have to be quick, otherwise his drawings become shredded bits of paper.

Tuesday, 6 August 2013

Good Morning Mummy!

J has been really responsive over the last two weeks or so.
One morning, he walked into my bedroom, and I automatically said "good morning J", and where as he has always replied repeating back "good morning J", this time he looked straight at me and said "good morning mummy". I was awe struck. He'd never replied to me in the correct form before. It felt really good.

J has never wanted cuddles or kisses. He has always been given them though, despite his nonchalance towards it. He usually stands still as you cuddle him, no movement or return of the cuddle. When he is asked to give someone a kiss, he makes a dramatic "mwah" sound and bends his head towards the person, but doesn't make contact.
The other day I could tell he was looking for the iPad. I stood in the doorway in the hall, and pointed to where I had left it on charge in the playroom. He went and unconnected it, and walked back to me, leaned in, and gave me a peck on the cheek, and said "thank you mummy". I am sure I stood still for a good minute, not quite believing what had taken place. Again, he had never proffered kisses, and never said thank you for something, unless prompted to do so, to which it would be an almost echolalia reply.

J's usual iPad use is for YouTube and watching all the old children's shows he loves, or for taking endless photos of exactly the same object.
There are games apps on there too. These are ones my middle son, O, aged 7, plays. J has opened the game apps up before, but never played them.
One early evening, when my middle son was away for the night, I could hear the familiar tinny music coming from one of the game apps. I popped my head in to J's room, and he was sitting there playing an app called 'Subway Surf'. He wasn't just messing around with it, he was actually playing it, correctly. I thought nothing more about it, until my middle son was back and took the iPad to play. He called out, asking who had been playing that game, and I took a deep breath, waiting for the onslaught of shouting at me for letting J play it. But instead of hearing the yells of complaint, he was really pleased. The gold coin count had increased massively. J had been collecting them during each go. O was actually pleased about it, which made a refreshing change for me.
It is hard to be a sibling of a brother with quite severe learning difficulties, and he has witnessed many an outing where strangers stare, tut, make hurtful comments, and condemn me for my poor  skills at being a mother.

Only very recently, at the local beach, a man in his 60's suddenly started verbally assaulting J. J had had the nerve to stand near the man's car, which was parked right up to the pebbles at the beginning of the beach. The shouting from this man caught the attention of a father sitting with his children. He stood up and sort of gave me a look, questioning if I needed any help.
I have become pretty used to this kind of behaviour from strangers, so I calmly informed him J had special needs, and was not a threat to him or his car. This mans wife then attacks me with the kind of accent that makes someone from The Only Way is Essex, sound intellectual. She yelled that her husband was dying from cancer. I again calmly said that although that was sad, it had nothing to do with their behaviour towards my child. On and on they ranted. The father was still watching, and headed over in our direction, casually, not striding, and asked me if I needed help. He was willing to call the police and be a witness to the attack. I declined. J and I were bearing the brunt of this couple's anger at the cancer. It was just the wrong place, wrong time for us to be there.
O was standing by watching this. It is not healthy for children to be around such anger and confrontation, so I understand he gets frustrated, and can take that out on his siblings.

Going back to J, he was on one of our rambles in the forest, and I gave him the chance to decide which path to take. Usually either O or W, his youngest brother, aged 3, make the decision. On this occasion J stood at a cross path and said very clearly, "we go this way" in a very sing song kind of voice.

It's been very well received by me, and I hope J can understand that. I can liken it to the pride a parent feels when their first born smiles properly for the first time, or gives a full on belly laugh to your funny face pulling or exclaims of "boo!".