Row row row the boat

Well J has attended several sessions of his kayaking now and I am okay with it, not totally impressed, but not bad enough for me to stop him from going.
I think the first session was a set back as the worker assigned to shadow J and help him out, was rather complacent and didn't want to get involved.
I was left struggling to get him into wet weather gear (like the kind fishermen wear) whilst holding the baby and keeping O from running off to explore. Then he was left to make his own way in the kayak around the water. Getting him changed again was a nightmare as his boots got stuck and the helper stood by, watching me struggle, and moaned about how wet he had got ( not quite sure how, as he didn't go in the kayak).
Needless to say, I was not keen to continue this activity. I had been told the helper would do everything and all I had to do was drop him off.
Thankfully, the following week a different helper was assigned. And she was fab. She took him off without fuss. She went into the kayak with him and, in my opinion, he had a far better time and enjoyed himself.
With most things, little tweaks are needed to suit each child, and as J has little patience in waiting, we agreed to arrive 15 minutes later so as the whole group was ready. J had to wait around for the stragglers and it made him go into his flappy, repetitive phrase -"one more one more".
It is still a bit of a pain having it held so late in the evening, and in this heat the other two boys are not too happy about being dragged out in the car.It impinges on the bedtime routine and when we get home at around 8.30pm I am desperate and in need of a drink, but have to bath them all, read stories, give milk and collapse.

The Tories

Well, as voter, I feel I am able to complain and comment on all the governments shenanigans, and so I will.
I agree that something major had to be done to the economy to bring us back from the financial hole created over many years by selfish banks and the like.
However, it is sad that children and adults with disabilities are being shat over, yet again, by Mr Osborne,Mr Cameron and Mr Clegg.
I have a smidgen of hope that within the three years their new measures will be taking place, they section up those with life long disabilites against those with potential recoveries - such as depression,a bad back, a broken ankle etc.
I also hope that whichever group of smart arses come together to decide how the new ideals come into effect, they do not dismiss mentally disabled children and adults as being less disabled than a person confined to a wheelchair. Disabilities may be different, but they all do the same thing - impair the person afflicted with it.
Perhaps a genius on the panel will declare that once a child with a learning difficulty such as autism has been seen by the governements chosen Doctor, the need for re-assement is not required. Well not until a scientist comes up with a cure.
I find it quite patronising to be told my child has to be re-assessed. What for? In case he magically cures himself through the wonders of eating as many Jaffa Cakes as possible?

As J lives in J world he has no ability to say how he feels about what has been proposed.
As his mum, and his full time carer, I am his voice. I am his fighter. I am his championing, yelling, screaming, demanding mother who will not allow him to be bullied, side lined, or forgotten about. I may be chronically shy and scared of meeting people, but when it comes to J I will always be out there. Always be talking about him. Always be making sure he gets what he needs.

Feeling hot hot hot

And what does J decide to wear?
Grannys red coat.
Under his cover.
On his bedroom floor.
I have a fan going in our bedroom, one on all night in Os room and windows open to keep the airflow.
But as quick as I open a window, J is there closing it again. Why?! It is so hot.
He has spent this evening wearing Grannys red coat zipped up to his chin and making his happy noises.
I found him dancing his little side to side jig in front of the hall mirror and at present he is marching up and down the landing floor singing "a la laaa fanks gigging". "Fanks gigging" means thanksgiving and is on his Berry Bear Holiday DVD.

I checked on him at 11pm and found him (finally) asleep, but still wearing the coat. Now, usually I allow him his little quirks that help him sleep, but it is so hot, he was sweating in it.
So I have had the task of trying to get it off him without waking him, not easy. But I did and I have put it away so he does'nt get tempted to put it on in the night when he wakes in his usual cycle of sleep.

Something so simple

Last week I took J to his school at the weekend as they hold a 'stay and play fun session'. It was the first time I had taken him, as it is run at the same time and day as his regular weekly session at the local Mencap centre, and as he loves going to the Mencap session I have never felt the need to change the routine.
However, certain issues have arisen, and I am worried that these sessions will become less available, more exclusive and perhaps even stop.
So, I felt the need for us to explore what the schools one had to offer, and whether J would enjoy it.
The plus points of going to the school are that it is very close, O is allowed to stay, and I can sit with other mums and have a chat.


J found it a little odd that I was staying though. He kept on saying "bye mummy", as he recognises it is his school, and I always just drop him off.
O loved the fact he could (finally) get a go on the playground equipment. Ever since last years fayre he has been asking to go into the playground, and now he was allowed with open access.


J was in his element as the snack tray was piled high with mini packets of biscuits. This was like a feast of excellent proportions and he was willing to go the distance and eat his way through all of them. I stopped him at the second packet, but his eyes were darting back over to them as they enticed him ever more.
I was side tracked by O and an aquarium of fish when I was informed that J was managing to make his way impressively through the remaining packets.
I rushed in and found him with a little pile of biscuits, an assortment of empty packets discarded to the side, a t shirt littered with crumbs and a mouth packed so tightly he just looked up at me with pleading eyes, begging me not to ruin his cookie conquest.
I think if he could express himself he would list that as a favourite pastime and would be very happy to repeat it the next week.

In the school gym there was a red plastic cone shaped toy which is large enough for a child to sit inside and roll from side to side. J spent a considerable amount of time in this and seemed quite calm and at peace.
I enquired as to what it was called and a catalogue for school play equipment was produced. It is called, simply, a 'giant top'.

Back at home I Googled this. Unfortunately, 'giant top' produces an assortment of items, none of which have anything to do with what I am looking for.
So, I extend the search, adding words, and finally I stumble across one solitary link to a website that sells play equipment.
It is around £40 to buy and is exactly the same as the school one.
I ordered it on Tuesday and it arrived on the Friday. As soon as J came home from school he dropped his school bags,took his shoes off, and went straight to it, climbed inside and rocked back and forth with a huge smile on his face.

He has spent most of the time playing in it and I have allowed him to move it round the house, so he can have it in the garden, the play room or his bedroom.
The design of this giant top is simple, but the pleasure derived from it is incredible.

I highly recommend it to parents, if you have the space (it is quite large, but not heavy) and hope he has many years of play from it. O takes a turn every now and then but it is J who is benefiting most, and that makes me happy.

His first interaction

The other day, J and O finally had a verbal interaction both ways and I was so proud of them. I had tears in my eyes at hearing and seeing them together.
J had created yet another magnetic drawing and it had several people drawn on it.
O had obviously seen me asking J before who each person was (from previous drawings he had created, not this one) and J responded to him.
It went a little like this..

O - "who's this J?"
J - "mummy"
O - "and this J?"
J - "granny"
O - "which doggy J?"
J - "Max"
O - "who's this J?"
J - "baby"
O - "well done J!"

Such a simple conversation, but so special and a first. Even O was taken back by the response as he is used to being ignored by J.

O is having difficulty in understanding why J is like he is. I don't use the word 'special' as it would indicate that J is better than him (in my opinion), so I say he is different. I try to explain that J does'nt understand many things and cannot talk well, but it is a lot for a four year old to understand.

Memories

So I have just been sorting through some photos I have found in a drawer. They are mainly of J during his baby years. I find it sad to reminisce over his old photos as it was a time when he had a future ahead of him which did not consist of adult supervision 24 hours a day and such basic language even three year olds have a better grasp of it.
I look at his smiling face and shining eyes and cannot see a trace of his disability there.
I was new to motherhood back then and loved every minute of it, as I still do (or I wouldn't have three children now!).
J was a joy. He was easy going and pleasant natured. He took to weaning like a dream and adapted to changes with ease.
I do remember remarking that he never had a temper tantrum. All through his toddler years he was content with whatever was offered to him and he was never bothered by having to learn to share, so tantrums never came about. This is something I realise was amiss. Tantrums are normal for toddlers ( as O has happily taught me) but as J was my first child I just presumed it was that we were just very lucky.
J only started to show his temper when he was around 3 years old. I can remember him trashing the house at least twice a day. And when I say trash, I mean he would go round each room like a hurricane, tipping the bookshelf over onto its front, swiping all the photo frames and ornaments off of the shelves and mantle piece, throwing every toy her could, smashing lamps onto the floor,picking up cups and plates and smashing them on the floor - there was much more but I don't want to write a whole long list.
We actually ran out of plates and cups due to his smashing, and we started to use plastic ones instead, which solved the dangers he was creating, but looked rather odd to visitors.
We stopped replacing the lamps as well.
I got so stressed at these daily temper outbursts that I had the health visitor around and broke down, telling her I couldn't cope with him anymore alone. There wasn't much she could offer, apart from a little patronising sympathy, and as my Grandma (RIP) had told me before (and I have mentioned here before too) children go through six week phases of annoying behaviours before moving on, and again she was spot on, as he stopped almost as quickly as he had started it, nearly bang on six weeks.
After looking at his baby photos I had a peek into his room where he is asleep on his mattress ( yes his mattress and not the landing floor (!!), although in his first sleep cycle he will wake and move back onto the landing) and looked at my big boy, all gangly legs and little snores, and wished for those baby days of blissful ignorance and warm snugly hugs.

Another magnetic drawing by J. This time showing one of the dogs (left) and Granny holding hands.

The dog loves to jump up, hence them holding hands/paws.

Pica?

I have wondered for a while whether J has pica.
As I have already mentioned he has severe food issues. A limited amount of food will pass his lips and if I try to get him to eat something new he will always gag,choke,spit it out or try to vomit. An example of this is when I tried to get him to have fusili pasta (the spiral one) instead of spaghetti with the spag bol (again the only spag bol he will have is M&S Kids range one). He chewed a bit then panicked and was spitting it out whilst screaming and trying to escape the room.
We know he does not have a chew problem as he can handle toast,chips,chocolate etc which require some effort to eat.

J has, for a long time, enjoyed eating paper,card,toilet tissue,kitchen paper,elastic bands, threads from clothing,threads he has loosened deliberatly from bath towels,mud,sand,baby wipes and toothpaste. Most of the time he will swallow the bits as I only ever find little telltale signs he's eaten these things by finding mushed up little balls of them in his room.

I know Js struggle to cope with new textures in food is mostly down to his fears of food. Take for example this - he will eat fruit pots (the pureed fruit pots designed for babies when being weaned, so no lumps whatsoever) and loves them. But, he won't touch fruit in its natural state. He never has done apart from bananas and even now they get thrown away when offered to him. So we know he loves the taste of fruit, its just the actual work of eating them that seems to be his hurdle. I have tried to increase the lumps in my own fruit purees, but he gags the second the mixture touches his tongue and refuses to take a second mouthful.

But why then is he happy to work tissue paper around his mouth and swallow it but will not do this with pasta or an apple? Control? Does he feel in control of the situation as he is the one deciding what to put in his mouth? I have never really gotten answers from the professionals about it either. They are not really concerned about his apparent pica and food phobia.
We have been referred to a nutritionalist several times in the past three years but no appointment has ever been offered.

I can only hope that as time goes on he loses his fears around food and he starts to enjoy a more varied and healthy menu.