Windows

J, as I have said before, loves looking out of windows. He will stand and stare, pressed up against the glass, at the traffic and pedestrians walking by.
Our house is set back from the main road by about 20 metres so the windows are not directly looking down onto the pavement, however as we live nearly opposite from a pond and park/woods there is a lot of foot traffic passing by as well as cars using the road to cut through to the main road.
I am on alert for a naked J dancing about at the window, lights on, so illuminating his antics for all to see. But this is not practical all the time.

I researched some ideas, and hit upon the tinted windows theme, like they use in some cars, to hide the shenanigans going on inside.
So, I searched on eBay and found several being sold, that were described as quick, simple and effective. They sell you the sheets of film in certain sizes and you fix it to the desired window.
I have now received the order through and utilised it.
Effective? Yes. Quick and simple? No.
Plus it is rather ugly from the outside and it looks as if we now have a dark room for a photo lab up in that bedroom.
From inside it has only a slight tint, and is hardly noticeable, which is good, as J would be trying to rip it off if it was very obvious, and of course it doesn't make the actual room darker by very much, so it is still airy and light. J has been touching the odd air bubble still stubbornly sticking around and making it crackle, but as far as peeling or picking at the film, so far he has left alone - fingers crossed he continues to ignore it and accept it.

I am quite happy that J can now jig, wiggle, sway or just stand pressed up against the window, and the outside world will not be any the wiser.
It may not be aesthetically pleasing to the eye, but for peace of mind and feeling safe that J is not offending anyone it is worth it.

And on a positive note, the cost is very very cheap. For a 300cm x 75cm roll of 40% tint, which has covered both windows, and allowed for the mistakes I made, it only cost £6.99 inc postage.

Summer time (and the living is not easy)

Blimey, who invented summer holidays? Why so long?

It's slightly easier when you have a neurotypical child ( 'normal') and they understand about the breaks from school, but for J it is confusing,frustrating and upsetting ( count me in for the last two).
I am lucky this year that J got into a play scheme for the first two weeks, but thereafter it is the boredom of the house for him, with occasional trips out to parks and the forest.
I have to time trips to the playgrounds quite early in the day so that we avoid the manic rush at around 11am of all other exhausted parents, where it then means J cannot have free reign of the swings.

It may be idealistic, but I think school should not end for a solid 6-7 weeks for special needs children.
J has no thrill of the impending break and excitement of playing every day with friends. He wants to be in the routine and expectation of schooling.
It is similar to when there is non-uniform day.
J would flip if I were to send him in without his uniform. He equates school uniform with school. Pyjamas or normal dress is odd and freaky to him.
I struggled the first day with his play scheme as he went to his school (where it is being held) and was quite upset. It was recorded in his book that he only calmed down with the flapping after lunch. Luckily he now accepts he is going into school, in regular clothes, but it is a play scheme and not school. But this will end in a weeks time, and he will be anxious as to why he is not going anywhere like that again.

There may be more help available such as carers hired through organisations, but these are sporadic ( 90 minutes per week, but can be saved up for a big block of time) and the structure and routine of the usual school week is abandoned, causing our children to fall into unwanted behaviours. It doesn't seem logical to me that this happens, especially when life is hard enough in general for the family and the child.

J the artist

Here are some photos of J's latest artwork.
Shame it is on my painted walls and not paper.

Illness

One of the things I worry about a lot now and in the future is knowing when J is ill.
Minor illnesses are easy to diagnose and treat, such as coughs, colds, stomach bugs and viral infections causing rashes, but anything internal and more serious I am sure we will not know until it is quite advanced, and that worries me.
J does become, naturally, lethargic when ill with the common infections, and I can treat him with childrens medicine to relieve pain and high fever.
As I like to think I am on the ball and pro-active rather than reactive, I would hope I would be able to spot something not quite right and get him sorted.
But, as is in the medical world, it is very hard to find out what hurts and where, if the patient does'nt talk.
It is the same for his teeth.
How will I know he has tooth ache? I hope he will be able to demonstrate through natural body language the problem so I can get it fixed. But as he is not a good patient and will not tolerate sitting in a chair having someone prod about his mouth it will be a long hard process getting him diagnosed and helped.
Any kind of procedure dental wise will have to be done with a sedation, but I worry that he will be freaking out internally but not able to move.
I still remember the drama over his first tooth wobbling and finally coming out.
He would eat sideways and scream and cry when he moved it with his tongue. For a week he held onto his tooth by the thread of a nerve and one day on collection from school his teacher handed me a tissue with his tooth in it. It had made it's way out of his mouth, onto the school hall floor during assembly, much to the consternation and crying from J.
The next few teeth were greeted with worry and upset, but he dealt more easily with it and I learnt that as soon as he alerted me to the fact his tooth was wobbly, he would have it out of his mouth within thirty minutes flat, flushed down the toilet with no trace.
The other day he caught his big toe nail on something in the garden ( he loves being bare foot ) and, as always, I knew something was wrong by his cries.
I saw it had ripped half way up his nail, along the nail bed, and was bleeding. As the nail had not come off completely he was fiddling with it.
I tried to clean it of dirt with some tissue and water, which was met with many howls of panic. Then, thinking it would be best, I attempted to cover it with a plaster. Oh no no no. That was pulled off straight away.
So I fashioned three of them, pulled tightly, and covering his whole toe. It was perfectly suitable as protection for his nail.
They lasted on his toe for a total of 180 seconds.
J decided he wanted to be au naturel and let it heal freely. Which it did.
It looks fine now thankfully and he's stopped picking at it, so I know the pain must have ended for him. Thank goodness.

Out in the park

J loves the outdoors. He can wander around forests without getting bored.
Parks and playgrounds also hold fun for him.
We went kite flying today.
I had to sit back in the car as little baby W needed a feed, so I had a good view of the park and the people milling about.
J was out there with his dad and O. O and their dad were flying the kite, and the dogs were having a good run. I scanned the scene for J. Where was J? Had he headed into the wooded area away from view? He wasn't in the playground area.
Then I spotted him.
He was holding a 500ml bottle of diet cola, and was rolling along the grass.
There was no hill, but he was rolling along and along and along as if there was.
The bottle of cola was held aloft by one arm whilst he performed his acrobatic skill.
He was called back over by his dad and for a while stayed close.
Then his wandering need took hold again, and he was off.
I saw a family had arrived and unloaded a pink girls bike, a dog (lovely boxer who looked very pregnant) and a daughter.
J was beelining for them.
They were ambling along happily when they got an additional companion who tagged one pace behind them.
They realised they had a follower and turned and smiled at him, and I think they said something, but as per J he didn't respond and you could see the quizzical expression on their faces.
He continued to follow them, and as his dad was enthralled by the kite now flying high in the sky, I knew I had to take action.
So baby on boob, I got out of the car and called him.
Nothing.
I called a little louder.
Nada.
I moved forward, aware of the offence I could cause others by feeding my baby, unlatched, covered up and picked up a swift half run half funny fast walk , still calling him back.
He soon heard me and diverted his steps away from them and back towards his dad.
I never caught up with them to explain, so they will never know why they had a follower.

Back in the car to finish the feed, and J and O are in the playground bit.
There are two teens sitting on the only two swings. They have their music playing and are swigging from some sort of caffeine/sugar concoction fizzy drink.
O is climbing the spider frame, and J is standing by the swings staring at the teens.
The teens say something and he ignores.
They look a bit freaked out by him still standing there.
I intervene yet again ( their father is having a whale of the time with the kite, meant for the children). I ask them politely if he can have a go on the swing and they both hop off, but still stand very close.
J swings back and forth, shouting his favourite phrases out, and the teens are thinking what a little madman I have on my hands. But he's having fun, so I don't care!

The dogs had fun sniffing a very willing little hussy of a female dog, with a pink diamante collar. My dogs choose an end and sniff, then swap. She enjoys it as she is wagging her little tail.

So all in all everyone had a good morning out, apart from J's t-shirt which has grass stains and mud over it.

Our A&E adventure

Around two years ago, when we were living in the old house, J came in from the garden crying and crawling on his knees.
I tried to get him to stand up, but he couldn't bear weight on his left foot, and wanted to sit down.
I panicked and thought he's broken his ankle or toe, but on closer inspection I realised he had a nail stuck into the sole of his foot.
Where this nail had come from I don't know, but it was sods law that he was jumping off of the climbing equipment, directly onto this stray piece of metal danger.
I could see the outer part of his skin around the nail head was already pussing up with green gunk and knew I had to get him seen to.
So we took him to our local NHS 'Walk in centre' on the advice of my GP surgery.
We waited for over an hour in their waiting room.
His foot was turning red from, what we later learnt, the infection.
We finally saw a triage nurse who said he would need to be seen at the main hospital.
Great! Wasted our time on that then.
Up at the A&E department, we waited an hour to see a triage nurse, before waiting a further three hours to be seen by a doctor.

J had behaved perfectly, sitting in his wheelchair and not making much fuss, considering he had a nail embedded in the sole of his foot.

When we finally were called through to see the doctor, I reminded them that he had learning difficulties and would not co-operate and did not understand what they were saying.
I was told by the first nurse that she was very good with children and he would be fine with her.
J screamed when she tried to lift his foot up to see.
So she knelt on the floor to have a look.
J screamed and would not keep his foot still for her.
She muttered something and disappeared back behind the curtain.

Ten minutes later another nurse appeared, and she too was very good with children, apparently.
When I explained about J, I was again met with not much acknowledgement of what I was saying, and felt as if they knew better and I was being over the top.

J screamed at her attempts to look at his foot.
She scurried off.

A paed doctor appeared, blustering in with the curtain swishing with her presence, and she declared J would need an x ray. Ha! If he won't keep still for a simple exam, how will he keep still for this? "Oh don't be silly, they are very good in children's x ray, and know what they are doing".

Well, in x ray we started off with a nurse, an x ray technician and a helper.
We tried him getting on to the trolley. Scream.
We tried him sitting in a chair. Scream.
We then tried him in his wheelchair, moving all the equipment around, bending and contorting it to reach him. Scream.
A further two nurses were called in to help.
I was given a lead apron to wear so I too could help.
Scream, scream scream.
J had turned beetroot and was sweating.
I was sweating and was trying to balance myself crouching down and holding his knees, whilst the lead apron dragged me with the gravity towards collapse.

After 45 minutes, I had proved that Sure deodorant does not work for 24 hours. It may work for the lovely svelte girlie who is rock climbing and jumping over things, but for this mum, stuck in an x ray room, with a screaming 6 year old, it let me down.

So, we were sent back to the department.
We sat for a further thirty minutes before anyone dared appear.

We were being moved to a side room. One that had walls and a door. Not sure that was going to keep the noise away from all the other patients.

The paed doctor appeared again, and was "very disappointed" that we had failed getting her the x rays. I explained, yet again about J. For a paed doctor she was not very in touch.
I asked about him being sedated for an examination. As they still hadn't gotten a look at his foot.
Paed doctor looks at me as if I have asked her to hack his foot off with a rusty blade and be done with it. "Oh no no no. I don't like giving sedation unless it's really needed".
Perhaps if I were to start screaming too, she would have considered it.

So, we were now stuck in this side room. Bare white walls. A strip light running down the middle of the ceiling. A solitary wall sticker of Winnie the Pooh pigging out on a jar of 'hunny' peeling at the edges.
J was calming down and lying on the bed.
I was sitting on a hard plastic flimsy chair wishing I could make this better for him and escape this place.

Suddenly a very tall and imposing male doctor appeared. He was authoritative but listened to me.
He took in what I was saying and muttered to his fellow companion he needed X to be called down now to help.
He administered some drug up J's nose.
This drug would either calm him down enough to feel spaced out and allow them to examine him, or it would make him hyper. Wow what a great drug! Sleepy or hyper and no-one would know how it affected him until it had been sprayed up his nostrils.

J did not become passive. But neither did he become hyper.

Then, a further 20 minutes later, tall doctor, his companion, (this is a bit like Dr Who, but not the lovely Mr Eccleston alas) and X ( a nurse from the paed ward upstairs) came in, held him down on the bed, looked at his foot, produced some metal instruments, and 'clang' I heard the sound of the nail being dropped into a metal kidney shaped dish.
His foot was cleaned and bandaged and he was given a tetanus shot along with some antibiotics.

It was all over. We could go home. Hurrah!

In total we had spent nine hours at the hospital.
It was dark when we left to go home.

As soon as we walked in the door, the nasal drug had decided to work its hyper wonders and J became manic. He behaved as if he had been fed sugar coated happy pills. But, at least he could bear weight on his foot, albeit limping, but not crawling along like before.

I did feel that if we had been listened to and the staff had an understanding of learning difficulties we would not have been treated the way we were, with added stress being applied because they knew better than me.
And I know this is a common occurrence for many other parents and their special children.

Bits and bobs

Well another week flies by and so much has happened.
I had the hospital appointment for the baby and it all went as well as it could, but now I have the long wait for the results. It's a shame my mind plays games and I am over analysing everything said that day by the Drs and nurses. I am 99% positive it will all be clear, but that little voice keeps on digging around and stirring it up and making me feel I have missed something.

J got awarded a certificate for his horse riding skills. He can say 'woe' and 'walk on' to his pony and enjoys the games they play. I know he has gotten another certificate for his trampolining (level 1) as I have to pay for the privilege of him receiving it and was told to bring money for the next session.

O has completed his three sessions at 'big school' and so far he is looking forward to starting in September. I have the gut feeling he will enjoy it for a few weeks then decide he does'nt want to attend anymore. He is a home bird and loves our time together, so I am sure he will make a U turn and come up with his excuses as to why he cannot go - " I have a cut on my knee mummy and that means I have to stay at home" (used by him as a reason not to attend playgroup).

It's funny, but you would think that all people that work with special needs children (and by that I mean children with learning difficulties, not just physical disabilities), would be conversant in their unpredictability, swings, communication problems, lack of awareness and understanding, but today, (and this has happened once before aswell) I was made to feel I should have reprimanded J and he should have understood his actions and the reasons they were wrong.
Be reminded that this was at a place designed soley for children with learning difficulties so he should not be a alien to the staff.
On collecting him I was told he had gotten upset as he could'nt use the computer as another child was doing so. "He pushed X as he wanted to go on it". I then stood there with the impression I should therefore tell J off.
J does not understand reprimands as such - especially after the fact. To him, if I were to tell him off at that juncture he would be confused and become upset, as it would seem to him I was just picking on him for no reason. I will not do that. No matter how long the woman wants to stand there hinting. Surely as a staff member working with these children, there is some understanding about their needs? I felt very let down and a little miffed that he was being targeted. Yes, tell me, if you have to, that he got upset and pushed, but don't make me try to tell him why he should'nt have done it. I might as well be telling him the answer to the meaning of life, it would make just the same amount of sense to him.
I could have asked why the children were unsupervised using a computer, but then that is just getting into tit for tat.

I remember an episode of the Simpsons, where Bart is trying to train his dog,Santas Little Helper. SLH was not doing as he was told and it was frustrating Bart.
The view changed to that of SLH and what he was receiving verbally from Bart.
"Blah blah blah, sit", "blah blah blah, fetch".
I remember a few years back, when on a course to learn about J and his autism, we were told how to keep our requests to a basic one-two word sentence.
Instead of "J can you go and get me your socks please?", we should say "J, socks" (with the intonation highest on the word 'socks'.
Therefore the actual request is not lost amongst a lot of words, and he takes in what he is being asked. To J the first sentence would have been "J, blah blah blah" and he would have missed the vital request of 'socks'.
Seeing SLH made me laugh as that is how I imagine J perceives the verbal world.

Recently J has been showing his love for his baby brother,W. Little things such as getting a wipe and gently dabbing his mouth when he has possited some milk up.
He lies next to him on my bed and holds his hands, stroking them. Or he'll hold his feet and prompt me with his word for the 'This little piggy' rhyme.
He goes right into W's space and up to his face, very close, not speaking, but W smiles when he knows he's there. They have a real bond.
O too has his bond with W. A little sibling rivalry also, but I know he loves him just as much.

As O is still not at an age where he can understand why J is different, it is frustrating for him and I know he feels left out of the loop.
I have tried to explain that J is different, but now O is telling me the reason he has done X is because 'I'm a different boy mummy, that's why I did it". It must be so hard for him, not having the usual relationship with his big brother and I feel so guilty that he is going through it.
I know O loves him however, as one day, on our way to the kayaking, O got it into his head that J was going away on a boat. He started crying in the car, saying he did'nt want J to leave us and go away on the boat. He said he loved him and would miss him. Talk about making me cry aswell. After explaining it was a little jaunt along the river for an hour, he cheered up and understood and then went back to bossing him about.

Boing Boing

Trampolining is going fab. J loves it.
He won a 'golden coin' today for his trampolining skills and when he viewed the photographs sent back for me to keep, he kept on saying "twampoline boing boing".

On arrival of collecting him from the gym I can see for myself his love of bouncing.
I should'nt be surprised though as his matress is wearing away from the jumping up and down on it, and he used to love the mini trampoline (the kind for toddlers with the handle bar) we had, until it became too lopsided and had the foam outer bitten away (J and his pica).

We have talked about buying one of those big circular trampolines for the garden, but even with the safety netting I just would'nt feel it is safe for our family.
J escapes into the garden a lot, and even though I try to limit his access into it when I cannot supervise, he often finds where I have hidden the key (I have to hide it downstairs and close to the door in case of emergency) and lets himself out.
Lately he as been waking at 4.30am and not going back to sleep. He goes downstairs and potters about, and if there was a trampoline set up in the garden, I can only envisage the bouncing noises coming from the garden at this time of night (or morning however you look at it).
As J can get quite over excited I would be worried about him having an accident. And as we have experienced A&E with him already (and that is a whole other blog entry!) I am in no hurry to repeat that situation.

If money (and space) were no object I would have one of those rectangular trampolines dug into the ground. I would feel so much safer and it would'nt stick out as much. I would have to fashion a device to stop the dogs getting onto it though, as they used to sleep on the old toddler style one - ahhh that is how it got lopsided now I think about it!
I can picture the scene, the dogs fast asleep on the trampoline, J decides to have the bounce of his life, and I have two terrified labradors heading into space.