Strange rash

Michael has developed a strange rash, yet again around his g-peg.

I'm kinda working on it being an excema type rash again, so have smothered him in Betnovate tonight in the hope that this takes the rash down.

Every so often one of these flares up, last time he had 4 swabs which all came back clear, so no infection, and we ended up with an emergency appointment to see a Dermatologist, who said that he thought the rash he had then was an excema caused by the seepage from his peg.

The rash he has now is a lot further spread, and not as red and angry looking as the last one. So fingers crossed it's the same type of thing and the cream will work.

Thing with the g-peg is you can only use certain types of cream, because others affect the material that the peg is made from and can cause them to rot and fall out!

The things we learn as we go along! Like vaseline and oxygen!!

National Autistic Society

Welcome to Public Autism Resource & Information Service -->

... helping you find services for people with autism (including Asperger syndrome) across the UK.

PARIS is provided by the National Autistic Society.

Link to:- PARIS

Michael's List

Diagnosis & presenting difficulties.

Learning Disability:-

generally, cognition appears within the moderate range

Severe speech and language disorder

Difficulties with attention and listening

Autistic Spectrum Disorder

Behavioural Difficulties

Feeding and Dysphagia

swallowing disorder

penetration of thin liquids - risk of aspiration

Fatigability

Selective eater Pockets food or spits it out

Chronic Lung disease of Prematurity

Pectus carinatum with intercostal flaring

Recurrent lower resp tract infections

Intermittent 02 dependency

Reflux

Bi-lateral ROP

ASD & Pulmonary stenosis

Planet Autism

I'm wandering around the web, when I stumbled across a link to the following article called "Planet Autism."

The Link states that the article will never be published because it is too graphic, on the whole for mainstream tastes. Those who really don't want to know what it's like to live with Autism.

I could have written some of this, my son is 5 the young person with Autism in this piece is 15 and female, so we have some slightly different issues. Michael hasn't yet hit puberty. In the last 6 months we cracked the toileting issues. But believe me when I say we have been here.

I will say the first section of this piece is hard hitting a deals with smearing etc, but I have to say if you want to know what it's really like, this is well worth a read.

Planet Autism

I got

Michael came and gave me a cuddle and a kiss today. This has got to be the first time he's ever done this at his own instigation.

He's joined in with the other kids when they've been clambering all over me, and giving out cuddles etc....but this is the first time he's actually walked upto me put his head in my lap, wrapped his arms around me and given me a cuddle.

He then followed this with "kiss" and pursed his lips up for a big smacker of a kiss.

I am loved!

Spot the Difference

Now is this Mr Tumble???

Or is this Mr Tumble????

Sometimes I

really don't like my life, it is almost 10.35am and I have been up almost 7 hours and 35 minutes.........it is going to be a very long day!!

Michael was bouncing of the walls at 3am this morning, and no matter how hard we tried we could not get him to go back to sleep. We watched Shrek 2 and Shark Tales twice before school this morning.

How can Mr Tumble be so cheerful that early in the morning??????

This is one of those mornings when I was really pleased when the taxi arrived.

Brain Scan -2

I was watching a programme on sky last night about early man and part of this programme was some neurological research being done, on people with vision disturbances. Particularly those who see crosswork patterns......anyway long story short, part of this research involved MRI's anyway there was an MRI picture with a "pretty butterfly" as I described it below.........hmm I wonder....................maybe the butterfly is normal!

Only 5 more days to March

It's been

Fairly quiet about the house today, if you don't count two different builders coming to look the house over, to give quotes for the work we're planning on having done.

The thoughts of the extension fill me with dread, the thought of managing 4 kids whilst the garden is being dug, the walls are being built, walls are being knocked down...urgh!! The dust etc is going to play havoc with Michael's chest so I think we will be moving out for a while. The thoughts of living with someone else whilst the work is done.....oh for a magic wand to wave it all fixed.......or the winning numbers for the lottery, so we could buy a bigger house and retire to the sun!!

Now back to the real world..................It will be interesting to see how Michael copes with it all.

We had a big fir tree in the garden which DH, and my FIL, cut down. Michael still has problems with the fact that this tree has gone, and been gone best part of 5 months now! Everytime he walks into the garden he says "ooh look" "Daddy cut tree" He then examines the tree stump, "aww tree" "tree cut down"

Autistic kids don't like a change to their normal, and as the extension is going to involve a lot of work, a lot of different people and his whole normal changing...it's going to be interesting!

No Snow!!

It is so unfair, the rest of the country seems to have snow, except us, we have snow showers, but they aren't lasting very long, and the snow is not settling.

I am like a big kid when it comes to snow.........I love it..........can't wait to get outside with the kids and build snowmen!

Only 6 more days to March and counting...............

Woo Hoo

I now have a guest book..........

I had to close the one down on Michael's website because some one kept posting links into gambling websites and pharmacy websites, much to my disgust!!

But now I have one and a guest map on here, be lovely if you wanted to fill it in, stop by and say hi......and we'll see how it goes!!

Research

I have mentioned this research before, and I'm probably likely to mention it again after we've been to see the neuro.

Brain Structure Alterations In Premature Babies

I've been digging around to see if I could find any research into the brains of Autistic people too, and came across this

What Causes Autism?

Insights into Autism

I have so many questions I want answering...............

I also discovered this evening that I can't spell!! I spelt it Intraventricular Haemhorrages........................How embarrassing, there was Michaels website, nothing else on IVH's just Michael's website and the suggestion that I'd spelt it wrong!!

Adventures at tea-time

Oh how I wish you could have been sat at the table at tea-time......

Sometimes I wonder, if Michael's Autism really is just due to his prematurity, and then I look around the table, and I know it's inherited...........

Tea-time tonight I have a 14 year old arguing with a 5 year old with Autism, over who is sitting where. Michael has taken to leaping into his older brother's seat at the very mention of the words "Tea-time" I know it's done to wind the oldest one up, and it works everytime.

Only tonight Michael was removed from out of the seat he was sitting in, and the oldest one slid his rear-end in. The commotion that followed was un-believable............

Turn the music up another notch!!!

Confession time

We have all been sick, which is why I haven't posted much in the last week. It was also half term, so all the kids were home from school.

When Michael is around the computer is not mine own. He loves watching, Mr Tumble over and over and over again.

Ok so I should be a sign language expert by now!!

But hopefully things should pick back up again, and I should have some time to get back to the computer.

Brain Scan

Ok so I have managed to cut a small section out of one of the slides of my son's brain.....

I am not an expert...I have no idea what I am looking at, but I am not convinced that his Ventricles should be this pretty butterfly shape that they appear in this MRI slide.

As my FIL neatly put it, "It's like trying to read a book in a foreign language"

Any passing neuro's or brain surgeons who understand this foreign langauge would love to hear from you!

Have I spent too long waiting for the negative aspect to everything???

March is too far away!

The Postman

Arrived this morning with the disc containing a copy of Michael's MRI scan, and a letter inviting us to an appointment with the Neurologist for the beginnig of March.

No matter how hard I look at the pictures that appear on my screen I can't make head nor tail of it.

I've sought out websites with pictures of normal brain scans, and I can't find one slide of Michael's brain that looks anything like what appears in front of me on the internet.

For normal, please note the nice neat little ventricles, 3 of them............. click here.

It's 4am

Urgh, 4 am what am I doing awake at this hour in the morning???

Small person taking up more of the bed than is fair!!!

On the mend & Spitting

Michael is feeling better, he has developed that mischevious look upon his face when he is doing something that he knows he shouldn't be doing, and yes he does know it's naughty, but he doesn't seem to care. He stands and laughs at you.

I don't know about you but the one thing I find really, really difficult to deal with is a child who laughs in my face, when I'm telling him off, trying to prevent him from burning himself on the cooker, or asking him to stay out of the fridge.

If you move him and tell him off, he will send you to your room, tell you your naughty, and then carry on regardless, then he will go into an almighty screaming session and eventually will start spitting.

I find this really difficult to know how to deal with, ok you want to have a temper, have a temper, get on with it, come see me when it's over.........but the spitting, he is a good shot too, and if he can't get to us as adults he will then turn it in on the others.

We got ourselves into a vicious circle, the more we tell him no, the more he spits, so we tend to ignore him, unfortunatly the little ones can't do that..........so we usually end up removing Michael and putting him elsewhere.

Thing is he is getting too big for me to lift, and carry kicking and screaming up the stairs.

Any ideas on how to deal with this????

I have been................

a very bad blogger over the weekend, things have been a touch rough, given that slowly one-by-one my squiddlies have all come down with this bug!

Am hoping to be able to sit down later and bring this up to date!!!

Update

We went to the Dr's today, Michael apparently has an infection, but take your pick as to where it actually is, apparently his ear canals were bright red, his tonsils are inflamed, his throat is red, his glands are up, and the noises in his chest are coming from his Upper Respiritory Tract. So we have a course of anti-biotics.

As long as we keep his temp down he seems to be reasonably ok in himself, but he'd had enough and took himself to bed at 6.30pm.

I have a sick boy

When Michael was dropped off by the taxi tonight DH was told that Michael wasn't very well, apparently he fell asleep in the mini-bus this afternoon, and was still sleeping when the taxi turned up to collect him to bring him home.

It says in his home to school book that he has been coughing a lot today, and that he didn't keep any of his lunch down....this just isn't a good sign.

When I got home from running around collecting prescriptions and feed, Michael was sprawled on the sofa, bright red in the face and generally looking very sorry for himself. He wanted to be cuddled, this is another sign he's sick!

Checked his temp, he has a temp of 39.7 or 103 something, so he's been given 10mls of calpol in the hope that this will bring his temp down, his resp rate is hovering at 40 breathes a min, but every so often he's stopping breathing and spluttering as he's trying to clear the congestion. Back into 02 we go, in the hope that this helps ease his resp rate.

I have the feeling it is going to be yet another long night, and if things haven't improved by the morning I think we'll be paying either the Dr or the A&E dept a visit.

I'm sad because Michael had done so well this winter, and managed to avoid contracting anything he couldn't handle, but it looks as if this one is going to be the one that does him, and possibly puts him back into hospital! I guess on the bright side this is the first episode this winter, so I should be celebrating really.

Now is my glass half full or half empty???

I can't believe it's

Thursday already, where has the week gone??? With one thing and another it has been a rough week.

Monday night was a bad night, F, seems to have developed a nasty cold, which has gone straight to her chest, so I spent Monday night sleeping downstairs with her.....

Despite being up at the crack of dawn Tuesday we managed to be late for school again, after the children were all safetly in school F, and I went shopping, how did I manage to spend so much??? Tuesday night was again spent on the sofa

Wednesday was spent trying to sort out finances for the extension, and last night was Michael's turn, he was awake at 1am and again at 4am. He was fairly chesty when he woke up this morning and pretty sick too, so I'm thinking at the moment that his chest is on it's way out.

Of course this morning we've also had all the excitment of the impromptu haircut too.

I am so tired today.....

She looks so sweet!!!

Yesterday

My daughter had a lovely hair cut




By 8am this morning all this had changed.

Whilst I was downstairs getting Michael sorted for school, she was upstairs in the bathroom, attacking her hair with Daddy's scissors! At 8am this morning I was on the phone in a panic trying to see if our hairdresser could fit us in before playgroup.

Hairdresser wasn't overly impressed at the mess F, has made, yes she has cut it that short above the ear. But I have to say the hairdresser has done an amazing job of rescuing it.

DH is going to have a fit when he sees what she's done

How???

come I got up at 5am today and the kids were still late for school???

answers on a postcard please................

Found some photos

In the digital camera I don't seem to have downloaded. This has got to be one of my favourites.

Founding members of the Tigger Club

Another one of my Favourites

And our Hols in the Lakes

This is a wonderful view, makes the struggle to get up there worth it!

It's only a little hill!!

I can't believe I missed these.......there are loads on there, won't bore you to tears with them all but..............

The Princess and the Pea

Remember the story of the princess and the pea??? If she is a real princess, she'll feel the pea under the matress. Maybe my son is a prince, and can taste the strawberry hidden in his drink.

I bought Omega 3 fish oils for J. in the hope that this would help improve his memory and his concentration. It's strawberry flavour, and he really doesn't like strawberry. So I mixed it in with his banana milkshake this morning. 5mls of fish oil in a tablespoon of milk-shake mix, and a beaker of milk, making sure he couldn't see what I was doing.

I handed it over to J. who lifts the cup to his mouth and says "Mummy, I can smell strawberry" followed by "It tastes funny, it tastes of strawberry"

So having been given it to try, I did, I couldn't taste it nor could I smell it. Boy does someone have good tastebuds and a sense of smell!!

Round Peg - Square hole

Well, it's been a busy day today, what with one thing and another,

We had school assembly today for J. which was lovely to see the work that all the children have been doing so far this term. J. stood and spoke really clearly, when it was his turn, and showed off his work with pride. It was nice to see, and I was very proud of him. They have obviously been working hard and kept busy this half term. I can't believe it's only another week and then they are on holiday again!

We also had a visit from SSD today too, about our respite, we met the carer, lovely lady with buckets of experience. Doesn't seem much would phase her, how can I say I have my reservations, knowing that if I do, we're likely to get the offer of a service withdrawn. I have sat in those meetings, heard the powers that be say, "yes but we offered a service and the family turned it down." It doesn't matter what the reasons behind the families concerns, the service was offered, round peg - square hole!

My reservations are based purely on the carers age, and mobility, and knowing what a toad my son can be for putting on a burst of speed and vanishing. I'm not sure she would be able to catch him if he went. We have agreed to meet with my man, I think she needs to be saying herself that Michael will be too much for her. I maybe way off here, he may be a complete angel for her.....that would not be unusual........so we'll see.

We also had a visit from the architech today, we put in for planning permission to extend the house, a couple of months before christmas, and the permission came through over the holiday period. The architech has now drawn up the builders plans, which need to go into the council, so they'll go in on Monday. Which gives us about a month to sort out the mortgage, and employ a builder! GULP!!!!

Life sure is going to be fun around here when they start building the extension!! I think I'll be moving out for a while!!

my tail

Michael likes to play cats and dogs, we've had a few problems with making tails of his own. Keep your fingers crossed this new suit complete with tail solves our problems

I am officially

fed-up................................ football in the living room, one very excited teenager, who keeps leaping into the dining room and frightening me silly, every-time Man Utd score, and as I write this Man Utd are winning 3-2 (Yawn!!) although I guess as one of their players apparently just got sent off, might not be long before that all changes!! There he goes again apparently it's 4-2 now..................................

Well, Michael is being "promoted" - he is currently in a school for children with mild/moderate learning disabilities, and is in the Base - this is a unit for children with Autism, within the school. A lot of the Autistic children start in this area of the school, and as they progress they are moved into the main part of the school. The Base has a higher level of staff to pupil ratio than the rest of the school, 1 staff memeber to 2 children...

They have decided that Michael doesn't need to be in the base any longer, he's doing so well, that he could be intergrated into the main part of the school. Here he'll go into a class of 6/8 with 2 members of staff. He came home tonight and proudly announced he "been new classroom today"

To be honest I'm not sure how I feel about it. I guess that probably sounds really strange, I should be really pleased, and I am.....but I still can't help but wonder, how he's going to be, when he doesn't have such intensive support, and I really hope that things don't change too much, and so spoil the enjoyment that he gets out of school.

What a worry wort eh??????

But we've had a reasonably good day today. None of us wanted to get up this morning which wasn't really a very good start to the day. DH is on a funny late shift, starts at 4pm and finishes at some silly hour in the morning like 3am! Which means by the time he's got home and unwound it's almost time to get up. At least with nights he's here in the evening!

Anyway, we were all awake sort of by 8am Michael's taxi arrives at 8.20, and I'm not sure Michael wanted to get up this morning. He was doing a good impression of my nephew, when he appeared at the bottom of the stairs in his duvet.

J. had physio today too, he's doing ok, but we need to make sure he does his exercises every-night, and I guess she'd have a fit, it we were honest enough to admit that his braces come off at night almost as soon as we're down the stairs!! He finds them so uncomfortable..............

And me, well I admitted defeat and have gone back on the anti-depressants......one of these days I will realise that I can't do it all!