Wednesday, March 23, 2005

Things are not good

Here at the moment.....

I need a break and some time out, so I may not be posting for a little while.

But hope to be back soon

Sunday, March 20, 2005


I have no control over my life!
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It is one of those days today.
I need a gin and tonic and it's only lunch time

Michaels staple diet

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Sunday, March 13, 2005

Self Portrait 3

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Self Portrait 2

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DH has just arranged a weekend in Ireland on his moto-guzzi.
So that is a weekend in Scotland, a weekend in Ireland and a week in Italy.
DH --- 3

Moi --- 0

Something wrong here

G-Peg Feeding

Michael didn't get fed last night. We got up this morning and there in his feed bottle was 900mls of Nutrini High Energy Multi-fibre feed!

Now I need to work out why he didn't get fed.

The machine was going, nothing coming out the end of the tube, but it wasn't alarming.

this means that:

a) Michael switched it off last night before he went to sleep and switched it back on again this morning.
b) His machine is knacked

Saturday, March 12, 2005

Due Date

Today is the 12th of March 2005.

Today is the day Michael was due.

Today is the day that should have been Michael's 5th birthday.

Sometimes I wonder how things might have been.

Friday, March 11, 2005

Red-nose Day

Red-nose Day for Michael, off he went off to school this morning in non-school uniform with his hair sprayed red, and with his nose in his pocket!!

All the children took part in red-nose day today, so all four of mine left home with red hair and red noses, a bit like this one!!

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He also took part in World Book Day, and returned home from school this evening with a couple of books in his bag! He came home with "Night Flight for the Little Red Train" by Benedict Blathwayt, and Stegosaurus hear me roar. So we shall have lots of fun reading those.

Thursday, March 10, 2005


Wow have we had a busy, busy day today. There was a tea-party at the school this afternoon, a chance to go and meet some of the other parents with children in the unit, and look at the work that the children are doing. I have to say Michael was really pleased to see me, and I got a lovely cuddle from him, which was wonderful.

Firstly, Michael will be moving up, he'll still be in the same school, but after the Easter Holidays he will be going full-time into another class. Very small class of about 6, with 2 teachers, but he won't be in the Autism base anymore.

The aim of the Autism base is working towards intergrating the children either into the main area of the school, which is mild-moderate learning disabilities, or if at all possible back into mainstream. I say mainstream, because one of Michael's peers is returning to mainstream after Easter. So that was good news, Michael is getting promoted.

We were given the opportunity to look at Michael's work, it appears that Michael is struggling with pencil control, any written work was done hand-over-hand. But it was lovely to see his efforts at colouring in, and picking out the biggest on the line, and his news book.

All Michael's teachers said what a lovely little boy he is, and how amazingly bossy he is! Apparently one of the aims he is working on at the moment is to "Stop talking and answering for everyone else" Image hosted by I think my son has a big mouth!!!

I also got chance to speak to the SLT, or Wendy Bitch as Michael call's her. No she's not, she is lovely, but Michael can't quite get his mouth around Speech and it comes out as Bitch. I digress, about Michael's most recent diagnosis......jury is still out on that one, so watch this space!

Wednesday, March 09, 2005

Social Stories

Social Stories, I have to say work really well with Michael, unfortunatly tonight when he was playing up I didn't have one to hand.

So I have ordered a couple of books on Social Stories from Amazon in the hope that they will help me put something together for him, to try and end these tantrums.

This is what Social Stories are:

What is a Social Story™?

This author first defined Social Stories early in 1991. Since that time, experience with Social Stories and an increasing understanding of the approach has resulted in revisions of the original definition. A Social Story is a process that results in a product for a person with an autistic spectrum disorder (ASD). First, as a process, a Social Story requires consideration of – and respect for – the perspective of the person with ASD. As a product, a Social Story is a short story – defined by specific characteristics - that describes a situation, concept, or social skill using a format that is meaningful for people with ASD. The result is often renewed sensitivity of others to the experience of the person with ASD, and an improvement in the response of the person with ASD.

For further info visit here

Stress Levels

I have been scouring the net to see if I could find something to link into my blog that would allow me to describe my stress level with each post. I can't find anything so I'm going to have to make one up.

Stress level right now on a scale of 1-10: 100

Why am I stressed???

Pass, I wish I knew, it might have something to do with the fact that the kids played up at bed-time. I got Michael bathed, no problem, got him out of the bath, and two horns and a tail appeared.
He wanted to go to the loo, I'm sure that kid thinks I'm silly, he knew as well as I did he didn't want to go to the toilet, he wanted to get back into the bath. So whilst I'm trying to dry him off, he is screaming and creating and telling me that his name is fred*

Michael then starts fighting me, and once I'd lost my grip that was it, he started throwing himself against the wardrobes, shouting "My name Fred"*

I have to confess I do find these sessions extremely difficult to manage, I don't know how to deal with him. I was very firm in telling him his name was Michael, but I think he know's it winds me up, so he does it all the more.

I struggle in knowing how to get him to listen to me, as he was creating tonight he was watching himself in the full length mirror on the wardrobe doors - who needs an audiance when you have yourself??

How do you negotiate, communicate, with a child who knows nothing but their own rage and their own feelings??

He is now snoring, and I am stressed!

*name changed to protect the innocent!

Watch out Mr Tumble

Mummy has been on a Makaton signing course today................

I'm trying it out on Michael at the moment, he thinks it's funny!!!

I signed "good boy" to which he replied "not boy. Michael" talk about putting me in my place, so now I have to do "good boy Michael"

For more info on Makaton click here

Tuesday, March 08, 2005

Mummy guilt

Michael couldn't wait to get back to school today. I'm not sure how to feel about that.

Don't get me wrong, I'm pleased that he enjoys school and that he has a lovely time whilst he's there, and that he's settled etc. He has just had 4 days off school, he was off Friday becasue of the snow, and then again yesterday, (Monday) because of an occasional day, which upset his routine especially as all the others were in school or playgroup. I do realise that he gets so much out of being in school, especially the 1-2 attention, they do so much with the kids to fill their days.

This morning he was intergrated into a class within the main body of the school, the class he will probably join full-time sometime between now and September, and then this afternoon apparently they have been painting butterflies. He got home from school and told me all about it. Which is wonderful but makes me think that perhaps he is bored at home, and that I am not able to do enough to keep him occupied.....ok I confess, mummy-guilt!

Monday, March 07, 2005

A Self Portrait by Michael

This is a Self Portrait by Michael.

This is the first picture that Michael has ever drawn all by himself that really resembles anything. Developmentally he is behind in his drawing skills, it's not that long since he could only scribble, he couldn't draw a circle. So to see a face with arms and legs and for him to say "Picture of Michael" to me is amazing!

Sunday, March 06, 2005

Mothers Day

Happy Mothers Day to all the Mums out there.
Hope you've all had an amazing day. I know I have. We went to my MIL's today, and took the children over to Hatfield Forest. It is an amazing place, it is as far as I know a very old hunting forest, now maintained by the National Trust.
I have to say it was very wet, very muddy and fairly cold, the wind was bitter, but it gave the children the chance to blow away some cobwebs, get themselves and DH covered in mud - not that he was all that impressed!!!
It has just been a lovely family day, once back at MIL's we had a lovely meal, and bathed the children before leaving, they fell asleep in the car on the way home. So once home off to bed with them all, and peace reigns!!!

Saturday, March 05, 2005


I escaped today, DH has spent the day at home with the children, while I went off to Peterborough for the day. I met my Mum up there, she came down on the coach.

So together we wandered around the shopping centre and then went to do lunch in a resturant together.

I had a lovely day, it was so nice to be able to get out and away and do some grown up type things without the kids!

Mothers Day tomorrow

Friday, March 04, 2005

Snow Day today

No school for Michael today, he's had a snow day. Nothing like the snow the rest of the country seem to have had over the last week or so, but enough to close some of the schools around here, poor J, was the only one out of my 4 who had to go into school today.

Anyway we spent the day at home finding things to keep Michael and his sister occupied, DH had just come in off a night shift, and Michael doesn't understand about Daddy sleeping, it's day time as far as he's concerned Daddy should be up.
We did try to build a snowman but the snow was snowball snow as opposed to snowman snow, it just wouldn't stick together properly to make big snowmen, it just fell apart, and it was so cold outside, even Michael who doesn't feel the cold that much, soon gave up and wanted to be in.
Once in we baked cakes, they love baking little fairy cakes!! Then the postman arrived with a package from America. Andrea who co-owns the forum I belong to had sent over some easter goodies, and very nice they were too. Andrea, that is chocolate to die for!
But also inside the package was an Easter Egg kit, so we boiled eggs and dyed them and then decorated them. Michael and his sister had a ball. Michael has green fingers, literally from dunking the egg into the dye.
End result:
We've saved some of the tablets to make some more for Easter holidays so we can have an Easter Egg hunt.
Then this afternoon we have played with playdough, and watched a bit of TV, and before we knew where we were it was time to go and get J, from school.
This evening Michael got into a bit of a disagreement with his sister, she slammed the living room door, (yes, she is only 3) and trapped his finger in the door. It has sliced through the skin on the tip of his finger, fortunatly not too deeply, but deeply enough for it to need steri-strips and a plaster.
Two hours later, Michael was still wailing about his finger, bless him it must have hurt. But the thing that distresses him more than anything is the plaster.
Michael can't cope with plasters, or blood, if he cuts himself he wails and once it's stops bleeding as far as he's concerned it's all over and done. Have to have a plaster and it isn't over and done until the plaster is removed.
I am so hoping that it will be healed enough in the morning for the plaster to be removed, or tomorrow will also be spent wailing and distressed. That isn't nice for him or for anyone else!!

Wednesday, March 02, 2005

Back from the Neuro

We saw the Neuro today, who went through Michael's MRI with us. He's done pretty well actually and it appears I was worried about nothing, ventricles are that pretty butterfly shape!!

Anyway, she did say that there is some loss of white brain matter in and around the end of the ventricles at the back of the brain. Given that he was extremely premature, and the stage of development that his brain was at when he was born, having had the bleeds into the ventricles etc there are some subtle changes in his brain, but no glaringly obvious bits missing etc.

His Learning Disability and the Autism come from the way his brain is wired, and this just doesn't show up on an MRI.

But Michael failed the facial muscle testing that he had done at the same time as his MRI, Michael has Bulbar Palsy. Although it doesn't show up on an MRI, because of where the damage is situated, it is seen as neurological, and explains the problems that he has with his feeding, and swallow reflex etc. When asked what this meant for the future in terms of eating and developing a swallow reflex, the neuro felt that things aren't likely to improve and that Michael is always going to have an issue with swallowing etc.

Tuesday, March 01, 2005

D-Day tomorrow

Tomorrow is our appointment with the Neuro, I have been going through the brain scans again this evening trying to work them out. This is the first time Michael has ever had an MRI scan so I have no idea at all if what I am looking at is right or wrong or somewhere in between.

When he was in NICU they were done through his fontanelle, I think, and we never got to see them, we were only told about them.

But I guess by this time tomorrow, we will know what the MRI showed, or didn't as the case maybe. I have to admit to being a bag of nerves right now, I've hit the chocolate that's how bad it is.
Michael is Michael and what ever we learn tomorrow is not going to change him, or anything about him or the way we feel about him. But in a strange way it almost feels like we are about to discover the family secret. You know the one everyone else refers to but no-one will tell you, the one that makes all the little pieces of the jigsaw fit into place!!