Saturday, April 30, 2005

Peace at Last!!

Now the toys have been returned to the toy box - why do children always empty their toy-boxes in the door way??? (I almost broke my neck, trying to get to the phone tonight!!)
The fish food has been swept from the carpet and the sofa; and the Postman Pat cake/s swept from out of the living room window sill, it had been crumbled and spread all the way along the sill. I wonder what that was about? I wonder if he was feeding the birds!?!

I have some time to fill you in on the news around here! Well, what a day, it's been a long one!! But fun!!

The extension, before the builders left last night they taped off half the garden, they have demolished part of the house, and started digging a foundation trench; some of their tools are laid on the grass, and the 'job' is all laid out ready for the digger to come in on Tuesday to start on the foundations. Anyway the taped off area's these are supposed to be out-of-bounds areas. -- NO TOUCHY MICHAEL.

It's out of bounds, so therefore, it is where he wants to be, the temptation to just get in there is too great for him to ignore, I walked out into the garden earlier and Michael was building a wall, where the old one used to be!!!

I have to say I'm not too sure how he's coping with the fact that part of the house has been demolished, he keeps repeating, "Naughty man" "cut wall" with Makaton signs. "Naughty man cutta wall" We've tried to explain to him that it's ok, he's not a naughty man, he's a builder, like Bob, and that he's going to build a new wall. Please keep your fingers crossed that at some point in the future Michael doesn't take a hammer to the new walls, like he did with the kitchen cupboards DH had just put in.

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Michaels New Wall

Fish 0 - Michael 1

DH keeps fish, he had a tank of Community Fish on the side in the living room, he loves his fish, "love me, love my fish" as they say.

I say he had a tank of Community Fish, as a couple of weeks ago, Michael wanted to be helpful and feed them!

One large pot of fish food later, and they were floating to the top of the tank!

So the whole tank had to be cleaned and re-stocked, this time he went for Oscars.

When DH and I met 10 years ago he had Oscars, he had 3, called Oscar and the Oscarettes! His pride and joy, and over time they all died off and our family expanded, the room for the tank size they need reduced; So he hasn't kept them for a while, anyway with the extension ongoing DH has decided that he will have Oscars again.

News for you dear if you read this, you almost lost those tonight too!!

Canadian Documentary on Preemies

Are All Preemies Worth Saving

Are all preemies worth saving?

NFB documentary asks whether doctors should keep extremely premature babies alive A National Film Board documentary has stirred controversy among doctors by questioning the large amounts of money spent on saving extremely premature babies who are often left with lifelong handicaps.

"It contains many exaggerations that paint a false and unfair picture of what we do," says Dr. Bruno Piedboeuf, interim director of pediatrics at Quebec City's main university hospital.

Written and directed by Montreal filmmaker Lina Moreco, Medicine Under the Influence offers a 76-minute glimpse into the lives of several Montreal children with severe mental and physical disabilities. "Many of those children would not have survived 30 or even 20 years ago. Now they do, with often terrible consequences," she says.

Adding to the problem is the lack of resources for these children once they leave the hospital. "It doesn't make sense that we, as a society, spend $250,000 to save a baby born after only 22 weeks, but spend next to nothing to provide the treatment and therapies they need to live with their handicaps. It's scandalous."

Dr. Pierre Marois, a Montreal child rehab specialist who appears in the film, blames the situation on pressure from pharmaceutical companies and the mindset of medical professionals bent on saving lives at any cost. "We need to change the mentality in our hospitals."

But several Quebec pediatricians have publicly expressed shock and anger over Moreco's portrayal of the situation.

"I felt sick when I saw it," Piedboeuf says. "Not just for doctors, but for the nurses and other personnel that work with these children."

He says the film portrays neonatal specialists as mad scientists, their tiny patients as guinea pigs in horrendous experiments. "It's an aberration to suggest such things," he says. "We're aware of the suffering, we share the human drama."

While agreeing with criticisms over the lack of resources for handicapped children, Piedboeuf says the film focuses on worst-case scenarios and fails to distinguish children born prematurely from those born with handicaps at term.

The head of Quebec's pediatric association agrees. "It's a reality that many infants who are born prematurely end up handicapped," says Dr. Thérèse Côté-Boileau. "That's the sad and bitter side, but it's only one side. Where are the positive outcomes? Where are the exciting breakthroughs that have raised the standards of care in this field over the past 30 years?

"Is the filmmaker suggesting we let every baby at 24 or 25 weeks die because 30 per cent are left with (complications)?" she adds. "Many full-term children are born with complications and disabilities. Do we let them die, too?"

With files from The Medical Post.


The Link to this article was posted on the premature baby forum I belong too. I would love to see this programme when it is broadcast, but I doubt I ever will.

I have my own views on this whole subject, and my main issue all the way down the line has been the lack of information available to parents, if you've read Michael's website, you'll know what a difficult time we have had getting info out of Dr's, and my feelings around that.

The lack of support that follows a prem baby going home, the wait and see attitude, in my mind is all wrong. I had a baby who was already 6 months behind in his development when he came home. Where was the support to help him catch up???

Some areas of the USA seem to have the right idea. They have early intervention programmes set up when the baby is discharged from hospital, so once baby is home they are linked into physio, occupational therapy and any other therapy they may need.

The BBC showed a Panorama programme a while back on outcomes for premature babies, this was based on research done on a group of premature babies born in 1995 - the EPICure Study and looks at the long term outcomes for our little ones. I'm going to sound really strange here, but I actually enjoyed the programme, it didn't tell me anything I don't already know, and showed what is the reality of my daily life.

To me the Canadain programme sounds as if it's along the same lines, showing the other side of the preemie coin. The babies who do not go onto develop normally, the babies who turn into children with long term problems, and the dilema's faced by their families in having to cope with a child with Special Needs without the support we so desperatly need.

Thursday, April 28, 2005

Clack Clack

Not sure if you can do this or not, but you know when you put your tongue in the roof of your mouth, just behind your teeth and kinda flick it downwards into the bottom of your mouth, it makes a kind of clacking sound??

Someone has taught Michael how to do this......which is fun,

Except at the moment it is constant.... my Mum noticed it when she was down last weekend, I guess I'm so used to strange noises etc I had noticed this one, or is that there are too many other things going on around here. Either way, since it was mentioned it has become more obvious, that this is his latest "habit"

clack, clack, clack!

I've just been upstairs to put his brother to bed, and Michael is still awake, he's laid in his bed playing with a teddy-bear, and talking to him, I couldn't quite make out what he was saying, but every third or fourth word is...............Clack

Wednesday, April 27, 2005

I hate bed-times

They remind me of why we need the builders in and why we need the extension so desperatly. We have a 3 bed house I have four kids and me and hubby, which means that there just aren't enough bedrooms to go round!

Once the extension is finished there will be, and maybe my children will go to sleep at night and there will be no more battles!!!

Michael takes ages to fall asleep, his sister is becoming a right moo at bed-time not wanting to sleep, and I am tired of fighting with them.

Tuesday, April 26, 2005

Social Story

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Builders and Extensions

The builders moved in yesterday, so things have been a touch chaotic around here.

I wish you could see me sitting here in a pair of ear defenders as the builders put a channel through the hallway, dining room and kitchen to lay a new gas pipe!!

And I thought this was a good idea why?????

Monday, April 25, 2005

The Weekend

My Mum came to stay for the weekend which was lovely, my Mum lives 150 miles away so we don't get to see her as often as I would like. So we had a very busy weekend, on Saturday we went to Willows Farm Village. I've never been before, and I wish I'd known about it earlier. It was lovely, we had an amazing day there.

The kids loved it, it had something for them all, we bought feed so that they could feed the animals whilst we were there. We started off in the small animal area, where there were, baby pigs, and goats, and mice, chicks and rabbit's. There was also an animal holding area, a seated area where the children could sit and hold either a rabbit or a guinea pig. These were lovely animals and the kids thoroughly enjoyed holding them. I think Michael could have stayed there all day holding his rabbit.

After we'd held the rabbit's we had a wander around the guinea-pig village. This was a huge barn area, with low brick walls, so you could lean over and stroke the guinea-pigs. There were hutches painted as houses, which the animals could escape into if they so wanted.

From there we had a wander outside, and Michael was really taken with a large Shire Horse, and he spent a long time feeding and stroking the horse. I had to help him hold his hand out flat, so the horse didn't take his fingers as well as the feed. But the sound of Michael giggling as the horse took the feed from out of his hand was lovely to hear.

We then went to feed the sheep, which gained the same kind of reaction from Michael, he thought it was wonderful, the sheep eating out of his hand.

We then went on a tractor ride round part of the farm, which Michael thought was fun, but I can't say he was overly convinced sitting in the trailer on the back of the tractor, and at times appeared to be slightly unsure of the whole thing.

We then did a boat ride around the lake, which was fun, although Michael ended up sandwiched between me and Mum to stop him disappearing over the side!!! Can't say he was too convinced by the life jacket he had to wear. ( Let you into a little secret Grandma put it on the wrong way round to start with!!!)

We then had lunch and after lunch we went back and played on the climbing frames and the fairground. With Michael spending ages just going round and round on the merry go round.

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Wednesday, April 20, 2005

Autism Information

So whilst I was searching for information on Rain Man on the internet, I stumbled across this site

1.1 What is Autism?

Throughout this presentation we will use the term autism - although it is well known that autism occurs in differing degrees of severity and in a variety of forms. The term's Spectrum and/or Continuum of disorders are commonly used to group people together that have a shared difficulty in making sense of the world.

Autism is a lifelong developmental disability that affects the way a person communicates and relates to people around them. Children and adults with autism are unable to relate to others in a socially meaningful way.
Their ability to develop friendships is impaired, as is their capacity to understand other people's feelings. People with autism can often have accompanying learning disabilities.

There is also a condition called Asperger's syndrome, which many experts - but by no means all - believe falls at the higher-functioning end of the autistic spectrum.

All people with autism have impairments in social interaction, social communication and imagination. This is referred to as the triad of impairments:

Social interaction (difficulty with social relationships, for example appearing aloof and indifferent to other people);

Social communication (difficulty with verbal and non-verbal communication, for example not really under-standing the meaning of gestures, facial expressions or tone of voice);

Flexibility in thinking and behaving (difficulty in the development of play and imagination, for example having a limited range of imaginative activities, possibly copied and pursued rigidly and repetitively).

There is a section on the Reality of Rain Man, and how common these savant abilities are in people with Autism, apparently it is fairly rare, and it's estimated that only 10% of people with Autism have these abilities, compared to 1% of non-autistic people.

Taken from AWARES

5.2 International Classification of Diseases


At least 8 of the 16 specified items must be fulfilled.

a. Qualitative impairments in reciprocal social interaction, as manifested by at least three of the following five:

  • failure adequately to use eye-to-eye gaze, facial expression, body posture and gesture to regulate social interaction.

  • failure to develop peer relationships.

  • rarely seeking and using other people for comfort and affection at times of stress or distress and/or offering comfort and affection to others when they are showing distress or unhappiness.

  • lack of shared enjoyment in terms of vicarious pleasure in other peoples' happiness and/or spontaneous seeking to share their own enjoyment through joint involvement with others.

  • lack of socio-emotional reciprocity.

  • b. Qualitative impairments in communication:

  • lack of social usage of whatever language skills are present.

  • impairment in make-believe and social imitative play.

  • poor synchrony and lack of reciprocity in conversational interchange.

  • poor flexibility in language expression and a relative lack of creativity and fantasy in thought processes.

  • lack of emotional response to other peoples' verbal and non-verbal overtures.

  • impaired use of variations in cadence or emphasis to reflect communicative modulation.

  • lack of accompanying gesture to provide emphasis or aid meaning in spoken communication.

c. Restricted, repetitive and stereotyped patterns of behavior, interests and activities, as manifested by at least two of the following six:

  • encompassing preoccupation with stereotyped and restricted patterns of interest.

  • specific attachments to unusual objects.

  • apparently compulsive adherence to specific, non-functional routines or rituals.

  • stereotyped and repetitive motor mannerisms.

  • preoccupations with part-objects or non-functional elements of play material.

  • distress over changes in small, non-functional details of the environment.

d. Developmental abnormalities must have been present in the first three years for the diagnosis to be made.

Tuesday, April 19, 2005

Rain Man

We watched Rain Man tonight. I remember seeing this film when it first came out, and I loved it, although I never dreamed at the time that I would end up as the mother of an Autistic Child.

DH has never seen this film, and as we were watching it tonight he admitted to having enjoyed the film, but I think he found it difficult knowing that we have our very own Rain Man upstairs sleeping. The thoughts of having to deal with the tantrums when he is a 30 year old man is a very scary thought indeed.

I love the underwear scene in the film, click here. I have to admit, when I was watching this scene tonight I really couldn't help but laugh hysterically, at the repetativeness of Raymonds distress over where he buys his underwear from.

The frustration of Tom Cruise, is frustration I know so well, I can relate so well to the whole feeling of not being listened too, of not understanding why, and how to deal with what is going on around you. The need to make yourself understood, why is this important??? why are you stressing???? why can't I help you???

And Finally getting to the stage where you want to say "Be quiet and stop your noise!"

Of course we don't have these discussions over underwear just yet!
For Clips from the rest of the film click here

Monday, April 18, 2005

Haloscan again!

Haloscan commenting and trackback have been added to this blog.

A Sense of Humor?

I have to relate this, it left both DH and I in hysterics, if not a little shocked.

Michael wandered into the kitchen making an awful noise, not really crying, more of a whinge. After the usual questions of "what's the matter?? What's wrong??" DH looked at him and said "Michael stop bleating"

Michael sharp as ever looked and said "I'm not bleating, I'm wining"

Turned and walked away, leaving DH and I standing there looking at each other, with mouths wide open!

Bright as a button our son!
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New Template!

The idea yesterday morning was to post and fill you in on what had been happening here in Preemiemum's world over the last few days, I went to have a look at the blog mentioned by Suzanne in her comment. I have to admit I was in tears as I read her first post, I could relate to what she had written so well, and somehow whilst altering the template, to add the link to her blog. I, well I don't know what I did.....:-( So we now have a new template around here.

Not sure, what do you think??? I have lost the link to the daily history, and I have to admit this new template is more confusing than the last one, as in, I don't seem to be able to add as much to this one as I could the other. It seems to throw a lot of things to the bottom of the blog, and then removes half of my postings!! So I may have to see how it goes and perhaps revert back to the old template, and start again. So it could be a bit strange around here until I get it sorted!!

Sunday, April 17, 2005

Bear with me

Ok so Mrs totally computer inept managed to screw the whole blog today, so I've had to replace the template, please do not ask how I managed it, because I really don't know, but I managed to lose the bar "A Preemie's Journey" from across the top of my blog!

I saved all my links etc so I could put them back, but I may have lost all the lovely comments that people have been leaving for me!

Not sure I am computer savy enough to be able to find them in order to get them back!!

(Woo HOO for Haloscan! I've put Haloscan back in and with it have come all the coments that you have left :-)

Anyway if you are expecting to see something here, and it isn't around at the momment then please accept my appologies, normal service will hopefully be resumed soon.

But Michael has just got up - mood today - not good!

Wednesday, April 13, 2005

Configuring the Neonate: Technology and Healing in the NICU

Ok so I was wandering around the internet earlier, when I came across this:

Configuring the Neonate: Technology and Healing in the NICU

It contains several referances to Michael's Website and quotes that I made on there.

Please read it if you get chance be interested to know what you think of the article.

If it was you that wrote it, please contact me, I'd like to know how you got on with it. I am assuming it was submitted as a piece of research in University or College.

I am Family

I am not Mum,
Nor am I Dad,
I am Family,

Michael lept out of the taxi tonight ran up the garden path and into my arms and shouted "hello family"

Several times tonight he has called me "family" I'm not sure if this means I have been promoted, or that Michael has suddenly clicked to the fact that he has a family, and that we are what he comes home every night too.

Mr Tumble (Something Special) has a programme on Family, being the 'special people who care and look after you'. It's one of Michael's favourites, I think it's probably starting to sink in with him, that he has a family, that there is Mum and Dad, Brothers and a sister, and that he also has Grandparents too. I'm not sure that Aunts and Uncles fit into his train of thought, as Aunts and Uncles weren't covered in the programme

I wonder if the BBC would do one on saying "I love you" because this is the one thing I know I'll never hear my son say.

Tuesday, April 12, 2005

For Parents of Children with Special Needs

If you live in the UK and have a child with Special Needs under the age of 3.

I recommend you take a look at this website, and order the info pack!

Mine arrived a couple of days ago, wish I'd had it 5 years ago! It really would have been wonderful for keeping track of who is who, who is doing what and all the things that we were going through with Michael and all the professionals involved in our lives. It also would have saved me having to go through things with every new person that got involved

This website provides information, news and up-dates on Early Support (previously known as the Early Support Pilot Programme), a UK government initiative to improve services for disabled children under three and their families. The website promotes multi-agency working and is for anyone who works regularly with very young children and their families.

There is also information for families - click on the ‘For families’ link to find out more.

Early Support involves the UK Department for Education and Skills (DfES), Sure Start and the Department of Health. It supports families and people working for education, health, social services and the voluntary sector.
If you are not sure where to start on this website, please click on 'view next' on the top navigation bar and follow our 'virtual tour'.

This is one of the booklets that arrived in my package on Autism

I will say one thing though to whoever designed it, the folders for storing older info! Could have done with those being a LOT BIGGER!!

Respite - a long tale

Those who read this, will know that things have been a touch shall we say 'shaky' around here, I'm not going to go into too much detail, but my depression monster seems to have resurfaced again, and there are others around here who have been bitten by a similar bug, and are struggling too.

Whilst I was not writing we were going to do an over-night reading, and the last time we saw Michael's resp he suggested making Michael run for 5 minuites and then checking his SAT's to see how long it took him to recover. This apparently would give some idea of lung function.

Anyway long story short, the SAT's machine was broken...wouldn't register the probe. So I rang the Community Nurses, to request another probe, only to discover when she arrived that the machine was indeed broken! wasn't just a dodgy probe!

We had a long chat, about how things are, how things have been and how things are going, A. has known Michael since he was 11 months old, and had his g-peg fitted, she has been the shoulder who picked up on the stress in this house when Michael was doing his "Houdini impersonation." She has seen me in some of my darkest hours. She has been the shoulder who has picked up my wrath on more than one occasion on how things are and have been......

Two days after her visit I got a phone call from the S.Wkr saying that the Community Nurses had phoned to express their concerns about the apparent lack of support coming into the house, ie no respite, etc......

The S.Wkr has referred Michael to a respite unit, and also requested funding for some form of home care, ie an agency or something, so the various options/possibilities are being looked into.

Anyway I did get a phone call from the S.Wkr today, but not about the bruises and burns my son sported to school. But to let me know that she has got funding for 8 hours a week, and that the respite centre are going to look into the possibility of 1 day a month.

Now to find someone to take the others, and I'm laughing!!!

Back to school and stress

Back to school today, Michael hasn't had a good night, it took him until almost 10pm last night to settle down to sleep, and he was wide awake at 5.45am.

Bright eyed and bushy tailed as the saying goes, if you look at the last entry on here last night I was awake late, so the last thing I wanted to do was get up at 6am! My own fault I hear you say for staying up so late, self inflicted and all that. But I am having problems sleeping at the moment, I am enjoying the peace and quiet the house seems to offer when they are all in bed and asleep!

Anyway we were up and sorted and more than ready when the taxi arrived this morning to take Michael to school. It was his first day in his new classroom, and apparently he has worked really hard and done really well. He burst out of the taxi this afternoon with a bright yellow book bag, and a big beam on his face, because he has a book bag. I'd love to be able to tell you that he was chatting away and telling me all about his day and what he'd been doing but there was nothing, other than this book bag, he had it open before we were up the path, and pulled out a couple of pictures that he's done in class today. It was lovely, and warmed my heart to see him so full of enthusiasm for his book bag.

Once inside the house Michael decided he would like to go on the Playstation, which wasn't plugged in, I'd un-plugged it earlier to dry my hair, and forgot to plug it back day I will learn.

So I returned the plug to the socket, and left the room, disc wouldn't work, old disc that has been previously a victim of Michael's teeth by the look of it. Half an hour later he was still inconsolable and furious that the disc wouldn't work.

The temptation to say "well if you hadn't chewed it" is great, but it wouldn't do any good at all. Michael wouldn't remember having chewed the disc, so the coment would be wasted on him.

The most frustrating part of the Autism is trying to get through to him when he is like this. I can't, he doesn't understand, all he knows is it doesn't work and he's 'angry' about it. If he even understands the anger.

A lot of work has been done with him on feelings and emotions, and he can see the faces, and point to a happy face or a sad face etc, but I'm still not sure how much he understands the emotions behind them.

Can I say by 4.30pm I was looking forward to bedtime?????

Monday, April 11, 2005

Back to School tomorrow.

Michael is back to school tomorrow, he's had 19 days home, and it has been a long 19 days!

I'm sending Michael into school tomorrow with:-

1) A bruise on his face from walking into a swing,

2) A burn on his wrist from having touched Grandma's wood burner whilst we were camping in the new forest at the weekend,

3) A scratch up his arm from falling over a plant pot in the garden.

4) A bruise on the top of his thigh from ---- ?????? I haven't a clue.

I await a telephone call or something from the Social Worker!!!!

Woo Hoo this is fun!!

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My first attempt

At scrapbooking!!

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Road signs

Artist Caroline Cardus has put together an exhibition of road signs on a disability theme.

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These are two of my favourites.
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Sunday, April 10, 2005

Scrapbook Factory

I've bought Scrapbook Factory for my computer, I envy my friends Cath and Steph, who can create some wonderful pieces.

Being totally unartistic I thought I could use the 'puter to do it.

Anyway trip down memory lane today, looking through the photos we have stored on the computer, for something to use on a masterpiece!!

This photo was taken, when Michael was 3 1/2.

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I love the look on his face!
One of pure wonder and fascination, mixed with a little apprehension

Monday, April 04, 2005

Mad - why yes!?!?!?!?

Please welcome the newest member of my brood
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This is Ginny the Hamster!

We are Back

Thank you for leaving messages for me, and for understanding.

I really just kinda needed some time out chance to re-charge the batteries. I still find myself overwhelmed by all that is my life, and have difficulties dealing with and facing the day to day issues.

Sometimes I have to admit defeat, five years down the line, this whole world of Preemies and Special Needs can be just as draining as it was when we first bounced into it!