Thank you to everyone

Who has visited this blog over the last few days, thank you to all of you who have passed this information on, and thank you to those who will keep their eyes open for these babies should they appear somewhere...

It is very much appreciated.

This is nasty

I've not been around as much as I would have liked for a while now....I've been trying to work through some things in my own mind.

Being the parent of a premature baby is devastating, it leaves you reeling, full of guilt and sorrow for the things that have happened, and the things that might have been, we post our stories in the hope that it may inspire parents who are going through the same things we went through. To show that it's tough, that life with a preemie has no certainties, but that they are not alone, in that others have gone through what they are currently experiencing.

The following has left me reeling, because I really struggle to comprehend, what I am seeing. The following is a link to a website....Go look at the pictures.

http://www.geocities.com/wilhelm_chance/

The top baby, he belongs to a friend of mine Shelley I first saw this picture a couple of years ago, there is no mistaking, that that babies real name, is Jacob. As you can imagine, Shelley is devastated, that someone has chosen to steal her son's identity in an attempt to pass him and this other baby off as their own "twins" As hard as she has tried she has not been able to locate the person who built this website.

As for the second baby we have no idea who that baby belongs to, go have another look, do you recognize him or her?? Do you know his mum or dad?? If so maybe you need to send them the link to the above website, so that they can see what some sickening person has done with their child.

Why would someone want to do this?? Why would someone want to steal the identity of two babies neither of whom belong to them and pass them off as their own?? Why would someone want to create grief and upset to parents who have already struggled enough to cope with their experiences......

Maybe this will go someway to explaining it.....

Munchausen by Internet

:Faking Illness Online
by Marc D. Feldman, M.D

Online Support for People with Illness - The Internet is a medium of choice for millions of people who need health-related information. Medical websites have multiplied exponentially over the past several years.

Thousands of virtual support groups have sprung up for those suffering from particular illnesses. Whether formatted as chat rooms, as newsgroups, or in other ways, they offer patients and families the chance to share their hopes, fears, and knowledge with others experiencing life as they are. These online groups can counter isolation and serve as bastions of understanding, deep concern, and even affection.

Unfortunately, cyberspace resources are sometimes deliberately misused by people intent on deceiving others. False product claims in spam are perhaps the best-known example. But even in the relative intimacy of health support groups, individuals may choose to mislead others by pretending to have illnesses they do not. They divert the attention of the group toward their feigned battles with cancer, multiple sclerosis, anorexia nervosa, or other ailments. The eventual discovery of the deceptions can be devastating.

One group member called it "emotional rape" to have cared so deeply about a person who lied to her and others from his first post on.

Munchausen by Internet -

For decades, physicians have known about so-called factitious disorder, better known in its severe form as Munchausen syndrome (Feldman Ford, 1995). Here, people willfully fake or produce illness to command attention, obtain lenience, act out anger, or control others. Though feeling well, they may bound into hospitals, crying out or clutching their chests with dramatic flair. Once admitted, they send the staff on one medical goose chase after another. If suspicions are raised or the ruse is uncovered, they quickly move on to a new hospital, town, state, or in the worst cases — country.

Like traveling performers, they simply play their role again. I coined the terms "virtual factitious disorder" (Feldman, Bibby, Crites, 1998) and "Munchausen by Internet" (Feldman, 2000) to refer to people who simplify this "real-life" process by carrying out their deceptions online. Instead of seeking care at numerous hospitals, they gain new audiences merely by clicking from one support group to another. Under the guise of illness, they can also join multiple groups simultaneously. Using different names and accounts, they can even sign on to one group as a stricken patient, his frantic mother, and his distraught son all to make the ruse utterly convincing.

Clues to Detection of False Claims - Based on experience with two dozen cases of Munchausen by Internet, I have arrived at a list of clues to the detection of factititous Internet claims. The most important follow:

1) dthe posts consistently duplicate material in other posts, in books, or on health-related websites;

2) the characteristics of the supposed illness emerge as caricatures;

3) near-fatal bouts of illness alternate with miraculous recoveries;

4) claims are fantastic, contradicted by subsequent posts, or flatly disproved;

5) there are continual dramatic events in the person's life, especially when other group members have become the focus of attention;

6) there is feigned blitheness about crises (e.g., going into septic shock) that will predictably attract immediate attention;

7) others apparently posting on behalf of the individual (e.g., family members, friends) have identical patterns of writing.

Lessons - Perhaps the most important lesson is that, while most people visiting support groups are honest, all members must balance empathy with circumspection. Group members should be especially careful about basing their own health care decisions on uncorroborated information supplied in groups. When Munchausen by Internet seems likely, it is best to have a small number of established members gently, empathically, and privately question the author of the dubious posts.
Even though the typical response is vehement denial regardless of the strength of the evidence, the author typically will eventually disappear from the group. Remaining members may need to enlist help in processing their feelings, ending any bickering or blaming, and refocusing the group on its original laudable goal.


References: Feldman, M.D. (2000): Munchausen by Internet: detecting factitious illness and crisis on the Internet. Southern Journal of Medicine, 93, 669-672Feldman, M.D., Bibby, M., Crites, S.D. (1998): "Virtual" factitious disorders and Munchausenby proxy. Western Journal of Medicine, 168, 537-539Feldman, M.D., Ford, C.V. (1995): Patient or Pretender: Inside the Strange World of Factitious Disorders. New York, John Wiley Sons.

We live in a sick sad world....

Do you ever wonder

where you and your child "fit"??

What do I mean??

Let me explain.

Michael is Autistic, he has learning difficulties, he has a brain stem injury which has left him with swallow issues and in amongst all this he was also premature, so he still has numerous issues that are hanging on from his days in NICU.

There are lots and lots of websites & forums out there for parents of premature babies, dealing with the issues that being in Neo-natal Intensive Care, then follow on to the first two years or so, and dealing with developmental delays and the other issues that come up with premature babies.

I have to confess that it was when Michael was 2, I started to wonder if I should really be posting in forums for premature babies.....would what I posted frighten new parents??? The issues that I struggled with were different to the things that they were experiencing.

But then where do you go? When you still need the support of other parents who walk the same road as you do?? When you still want to be with parents who understand how you got where you are today, parents who understand the concept of a 1lb baby?

Do you go to forums for children with Autism, do you go to forums for children with learning disabilities, do you go to forums for children with eating issues??? I've tried these and never really felt like we "fitted in"

Given the research, and the results of the EpiCure study, that 40% of preemies born between 23 & 25 weeks end up with long term issues, where do all those parents who once posted on premature baby boards go??

So having thought about it for a while, I have created both:-

A website :- http://www.prematurechild.co.uk/

A forum :- http://prematurechild.com

There is no age restriction on Premature Child, unlike one or two others I can think of, who set a lower age limit of 4....mainly because between the ages of two and four, I was floundering around in the dark, not knowing where to turn.

So if you are the parent of a premature child, and your reading this - please feel free to join us. I have to admit the forum is small at the moment, but up until now there was only a few people knew about it! But I am hoping that it will grow and by joining us, is one way to make sure that happens!!

Thank you

Wow it is so long since I last posted on here, I don't believe that I haven't posted for over a month. Thank you to everyone who left responses and messages of support following my previous post. I have to admit that whole experience knocked me well and truly sideways for a long time.

Well until Michael got his Autism Diagnosis and then I got angry!! I wanted her head, but unfortunatly had to settle for an appology from her manager, and an assurance that if she could re-do our little meeting she certainly would have handled things differently.......hmm wonder why??

Autism and blame

Please bear with me through this post, it may take me a while to explain where I am going with this, whilst trying to explain where this has come from, and why it has had such a big impact upon my family.

I feel I need to bring this up, the subject of Autism diagnosis, the history of such diagnosis, and the history of blame. The subject has been brought up on another blog I read regualarly, My Son has Autism. I have discussed this subject and post with Kristina and it is with her permission that I link and quote from her blog, and I thank her for allowing me to do this.

Kristina brought up the subject of Autism 'experts', and the origional belief held by many 'professionals' that Autism was caused by refrigerator mothers.

Kristina says in part of her piece that :-
"autism parents are in particular need of this, in part at least to debunk the much-refuted notion of autism parents (and especially mothers) as the cause of what is a biological, neurological condition. No parent, certainly, or teacher, or therapist, or doctor, or psychologist, or school or other governmental administrator, gives any credence to the notion of autism as caused by refrigerator mothers. But cultural attitudes can last for a long time in us, albeit unconsciously, and I do think that there are many, many misperceptions about "what autism is" among the general public and even among us parents and professionals."

I am according to the family therapist we saw, one of those refrigerator mothers.

Unfortunatly it appears that this theory is still very much alive and well, amongst some of todays professionals, and I am sure Kristina will agree with me on this. There are those out there, who still hold the values of Freud, Kanner and Bettleheim to heart, and pass them to the next generation of therapists etc who then take these beliefs on board.

My son was not born in 1943, he was born in 1999, and in May 2003, some 60 years after Kanner wrote his classic article I was told that my son's problems were my fault, they were due to depression, my anger, and my inability to bond with him.

The therapist stated that I had a distant / ambivilant attachement towards Michael. She descibes me as being angry with Michael because he has destroyed any hopes I had of having a normal child, and because of this I allow any kind of behaviour including defacating on the carpet. She finishes off by saying that "it is sad that this child cannot be given the help he could benefit from because mother refuses to return for a further appointment."

Kanner wrote his "classic" article Autistic Disturbances of Affective Contact in 1943, in it he states:

"There is a great deal of obsessiveness in the family background, the very detailed diaries and reports, and the rememberance, after some years, that the child learned to recite 25 questions and answers............."

The therapist we saw described me as "clinical" Most parents of children with any kind of medical history know that history inside out, they have them burned in their minds, we know what our children have been through, we know what battles our children have faced, and in most cases we are the only ones who have the complete picture, unlike us no-one professional is there for every single part of our childrens lives.

So yes I fall into this category, I have very detailed diaries, I have all Michael's reports filed away together, I write background histories for new Dr's because it saves having to go through it all again. It's there written in black and white, does that make me obsessive or organised? (Or maybe fed up of repeating myself over and over again!?)

"One other fact stands out prominently. In the whole group there are very few warm hearted fathers and mothers." he then goes on to say "The question arises whether or to what extent this fact has contributed to the condition of the children"

The following is taken from an article The Brutality of Dr. Bettelheim by Martin Gardner

Bruno Bettelheim was convinced, in spite of overwhelming evidence to the contrary, that autism had no organic basis but was caused entirely by cold mothers and absent fathers.

"All my life," he wrote, "I have been working with children whose lives have been destroyed because their mothers hated them."

Again: "The precipitating factor in infantile autism is the parent's wish that his child should not exist."

In the mid-fifties Bettelheim adopted a policy known as "parentectomy." Under this policy, parents were not allowed to see their children for at least nine months!

You can imagine the desolation felt by mothers when they were told they had created their child's pathology. Annabel Stehli, one of many such mothers, read Bettelheim's book about autism, The Empty Fortress (1967),

Stehli described her reaction this way:

I was carrying around this terrible secret. I didn't want to talk to anyone about Berrelheim. My husband said that he thought it was baloney, but I didn't talk to my friends about it.

I was very alone. I really felt as if I had a scarlet letter on, only the "A" was for "Abuse."

I felt that I'd hurt Georgie in some subtle way that I couldn't grasp, and if I could just figure it out, then maybe she'd be okay. There was a part of me that wanted to believe Berrelheim, because that would mean that if I got better, Georgie would get better.

Stehli and I may be seperated by decades, but the feeling of being blamed for causing your child's difficulties, and the devastation that it leaves you with, are no different now than they were in 1967.

I actually considered putting Michael and his siblings up for adoption, following the session with the therapist. The Social Services dept was only a few doors down from where I had been torn to pieces......... Why?? because I believed that if I was doing them so much harm, that they would be better being raised by someone who could solve the difficulties. Someone who was obviously so much better at parenting than I am, someone who would cause them no harm.

I was not depressed when I went in to see the therapist, a little stressed maybe, but I was downright suicidal by the time I came out, funny how much can change in such a short period of time.

This therapist played on every weak nerve and feeling that I have. I still carry around a large amount of guilt because of Michael's birth, and I will admit in the early days I did not bond well with this technology dependant baby, it's not always easy to see the baby for the machines..... at the time I found it hard to believe that he would survive. Not getting too close was my way of protecting myself from the heartache that in my opinion was bound to come when he died. So yes, I have guilt over my initial feelings towards Michael; but I am aware that it was also self-preservation.

As Michael grew we developed and adapted our ways of communicating or at least trying to communicate, to understand what he was trying to tell us. It didn't take long to realise that interaction is done on his terms. If he was actually sitting and doing something we learnt to leave him, we learnt that to try to join in, usually resulted in Michael leaving. We knew if Michael was having a tantrum over a video, that we would go through half a dozen video's before finally settling on the first one.

We worked with everyone we thought could help us learn how to communicate with Michael. We learnt to speak in simple bullet points, such as "good sitting" or "good looking" we used PECS, we had pictures of objects velcro'd all over the house, we tried sign language, and I have to confess Michael is so much better at it than me.

Does that make me cold and aloof or does it make me, like many other parents of children with Autism, tuned in, or trying to be as tuned into my child as possible, without over-stepping the boundaries my child has?

The therapist, refused to accept that having been born so prematurely, and having been so sick for so long, could have had any impact on Michael's development. She refused to accept that he was developmentally delayed. This she stated was because of my inability to treat him as a 3 year old, repeatedly telling me that, "unless you treat him as a 3 year old, he will never be a 3 year old."

She alledgedly managed to see something in my relationship with Michael, that no other professional has seen in the years that we have been working together. At no point through all our difficulties, has anyone ever questioned our relationship with Michael. Whilst everyone else we were dealing with was working towards Autism -

and this is where I come unstuck..............

Was it that she could see the "Autism in my son", and she chose to ignore it?? He was 3 years old, he was non-verbal at that time, he spoke 1 word and that was 'bye' as we were leaving. He behaved no differently in that room to how he behaves at home, he was fascinated by her necklace and the stockings that she wore on her legs, moving himself between the two. He recoiled in horror when she removed the necklace.....(it's as if he thinks the head will follow! You can see the look of fear in his face) He backed off when she tried to interact with him. As with many Autistic kids, we've come into contact with, interaction is ok, as long as it is on Michael's terms.

Or was it that all she could see was me, and she didn't see my child at all??

I have to say I think, it is the latter, all she could see was me, she was not prepared to look any further than her strongly held beliefs that children's problems ultimatly stem from their mothers.

My husband, like Stehli's, thought she was talking a load of twaddle, but despite that, her words hit a weak spot, my guilt, and caused a lot of grief, a lot of tears, and finally a lot of anger.

Three months after our visit with her Michael was diagnosed with Autism, and my first question was........... "Is it my fault???"

Frustrated again!

It's been half term week around here for the last week so I haven't been able to post as much.

Friday's occasional day really threw Michael's routine to the wall, we had a difficult afternoon Friday, because he couldn't work out why everyone else was in school and he was home. F, has started going to nursery in the afternoon, which is a whole new experience for Michael.

When he goes to school in the morning she is here, when he gets home she is here, and I guess it's never figured that she too goes to school. We spent most of Friday afternoon with Michael in tears wanting F. & J. from school.

Friday evening Grandma and Grandad came down for the weekend, to celebrate F's birthday, so we had a busy weekend doing lots of different things with my parents, including another birthday party for F, (who's birthday was the 19th)...she's now 4, where has my baby gone???

Tuesday I took Michael to the Dr's to request a referral back to the surgeon who repaired his hernia's. After a battle of wills, we now have to wait for an appointment, we may be looking at further surgery to sort out his little problem of missing bits of his anatomy!! Need I say more??

Whilst I was at the surgery I asked about flu vaccinations for us all as a family...we've always all had them previously, the idea it prevents us all getting the flu, bringing it home to Michael, and also stops us from getting sick, and being unable to look after Michael.....he usually spends so much of the winter sick anyway, without the flu being an added complication. I was told that they were only vaccinating critical care and the elderly at the moment, but they would talk to the Dr about it, and to ring back later.

I rang back today to be told that my oldest could have the vaccination, because he is an asthmatic, but the rest of us were not eligible, until December time, and only then if they had any vaccines left.

After I'd put the phone down it suddenly occurred to me that Michael's name hadn't been mentioned. So I rang back, to be told that Michael wasn't eligible......... To say I was spitting with anger is an understatement.

Michael has Chronic Lung Disease - his lungs operate at roughly 35-40% capacity how can you say he isn't eligible?? My son has just spent three weeks in oxygen because of a cold, how sick exactly does he have to be, to be eligible????.

The reply was - "does that have anything to do with his respiritory system??"

I understand that Doctor's receptionist's are not Dr's, I know that they are not medically trained, I know that she does not have the same knowledge as I do, when it comes to Michael and his medical issues. But I would have hoped that working in a surgery she may have picked up some clues from somewhere, that when we are talking lung issues, that, yes we are talking respiritory system.

I did try to explain as patiently as I could, that the lungs are part of the respitritory system and as such the issues he has with his lungs should have made him critical care.

What I really wanted to do was scream...........I couldn't believe that they were turning Michael down for a vaccination that is recommended he has, by every Consultant he see's.

This is the official version of flu vaccinations as taken from NHS Direct:

Introduction

Flu is a highly infectious illness, which spreads very rapidly by coughs and sneezes from people who are already carrying the virus. The virus circulates every winter, usually over a period of a few weeks, so that a lot of people get ill around the same time.

See your GP about the flu jab if you’re 65 or over, or if you have any of these problems (however old you are):

a serious heart or chest complaint, including serious asthma,

serious kidney disease,

diabetes,

or
lowered immunity due to disease or treatment such as steroid medication or cancer treatment.

Your GP may also advise you to have the flu jab if you have serious liver disease.
If you’re the parent of a child (over the age of six months) with a long-term condition, speak to your GP about the flu jab. Your child’s condition may get worse if they do catch flu.

If you’re the carer of an elderly or disabled person make sure they’ve had their flu jab.

You should also get the jab yourself if their welfare is at risk (i.e. you can’t look after them) if you fall ill.

Ask your GP for advice.

off school

Michael is off school today, for an occasional day, he's just appeared at the side of me, waving his dirty hands and stated "why I got pooh"

Oh happy days!!

Education

Michael attends a school for children with Mild to Moderate Learning difficulties, when he first started at the school he was in the unit attached to the school, for children with Autism. He did really well in there, and it wasn't long before they were moving him out and putting him into the main part of the school.

The whole ethos of the school is to work with the children in small groups, to help the pupils achieve their full potential, and where possible to re-intergrate back into mainstream education. I have to say it is the school we wanted Michael to go to.

It was not an easy decision, the school across the road, the mainstream school, bent over backwards to accommodate Michael, to make sure he was able to access everything that they had to offer. But when it came down to it, Michael was too far behind for him to be able to work at the same rate and pace as his peer group. He would have needed and entire curriculum just for him, he would have to have been taught on a 1-1 basis and so excluded from his peer group. There were certain area's of his behaviour that caused raised eyebrows, from the staff, his ability to disappear if eyes were removed from him, being one.

It caused a lot of sole searching from us, about what the future had to offer, do we go with mainstream, where Michael may end up becoming totally isolated, and further and further behind, or do we opt for special ed, for a school that has a reputation for working wonders with it's pupils??

That is just what it seems to have done with Michael, his verbal communication has come on in leaps and bounds, his interaction is amazing. Last clinic appointment we had, his Resp commented on the difference in him now, to how he was 18 months ago, when he showed no interest in anything, other than what someone had hung round their neck.

He has a fascination for Necklaces, Name badges, anything that hangs on someone's neck, however it stresses him, if the item is then removed...He just couldn't work that out. Almost as if he thought the head would then follow.

The child I sat and discussed last night with his teacher, is a completely different child to the one who started there a year ago. His teacher tells me he's too easily distracted, but he distracts himself, if someone walks into the room he needs to know "who they are", "why they are there" if it's his turn to go off and "work." Apparently one of the other children in the class was talking to him yesterday, when the SALT walked into the room, the child who was talking to him had to ask him 3 times, and Michael had to be reminded he was talking to E. before he took any notice of what she was saying!

His teacher did tell me that his eye contact is not good at the moment, and he needs support to concentrate on what he's doing, he needs to be helped to return to the task in hand, but the good news was that he is staying in his seat, and not getting up and wandering all over the classroom, as he was prone to do when he first started in her class.

As for his writing......well that was interesting, his teacher tells me he can copy the letters M I C H A E L. But chooses not too most of the time, so one of his targets for this term is to copy write his name. His writing on the whole seems to be a series of O's. When I asked what she seemed to think that was about she tells me that "its a boy thing" But with Michael it's not an easy process, trying to think about how to hold a pencil, what he wants to write, and how to write it..too much going on all at once for his brain to process!

She tells me his maths work is age appropriate, his grasp and understanding of math's, numbers, shapes etc is excellent. I think I have a genius on my hands!!

Respite - the saga continues!!

Did I mention that our Social Worker has left?? I got a phone call a few weeks ago, saying that she was leaving, and that at the moment there was no-one to take over the case, this is where we disappear into a big hole at the back of a filing cabinet, never to see light again. Am I cynical or can you tell I've played this game before???

Anyway it appears from what she said that Michael has been assessed in school by the Respite Unit, and that they think he would fit in well, which was good news, so we go to panel sometime in November, and if they agree with a placement for Michael there we go on the waiting list for a place, so we may get a place, when one becomes available, sometime in 2006!

Vent time

Some times I wonder what is going on with our NHS, it saddens me to hear other mum's experiencing the things that we went through with Michael and the lack of support out there that is available.

It heartbreaking to hear mum's with tube fed babies talking about how there little ones are losing weight, they can't afford to loose.....the dietician left, and as of yet has not been replaced, so mum's are struggling, don't know what to do, and no-one seems to care or want to help....it all sounds so familiar.

I know there is a big Consultation ongoing at the moment, which is fine, but what they really need to be looking at is long term, the bigger picture. It's not down to me to make the decisions over whether or not micro-preemies should be saved...but I really do feel strongly that if they are going to continue then the services that follow need a good kick in the pants. A lot of these babes do not come home fit healthy newborns with no issues, a lot of them come home with lots of issues, and parents need the support and advice on how to deal with those issues, because in the long term it's the child that suffers, and not because the parents aren't trying everything in their power to get their child the best.

Physio Therapy

I had an interesting telephone conversation with the Physio Therapist at Michaels school today..

I need to explain, when Michael was younger he was referred to a physio, because of concerns about his physical development, we went, Michael was given exercises and special Piedro Boots, to help with his balance and gait issues. The Physio discharged Michael before he got his Autism Dx, mainly because at that time his communication and his behaviour issues impinged on just about everything.

When Michael came of school age, we got a written report from the Physio, who described Michaels issues as Hypotonia and Ligamentous Laxity...... (looseness of the ligaments. Children with ligamentous laxity are often "double jointed". This means they can bend their fingers, knees and elbows backwards without pain, and even rest their thumb on their forearm - something that most of us can't do.) This was about the only explanation I could find on the web. I also discovered I've been spelling it wrong for a while too!!!

Anyway can't say honestly that we've done any more about it, I guess we were working on that if it was a major issue someone would have done something.

Before the schools broke up in June I met with the Physio therapist at Michaels school to discuss his chest issues, I mentioned that Michael had hypotonia and Ligamentous Laxity and that he'd seen a physio previously. The physio at school said she would assess Michael to see if this was still an issue for him.

I thought no more about it, until the phone rang today, the Physio has assessed Michael, and his hypotonia and hypermobility.

Now this is a new word and I have to say threw me into a bit of a loop, but the more research I do the more I'm convinced it's the same thing as Ligamentous Laxity - also easier to say and spell!!! ((I am sure someone can help out, if I'm way off bat here and completely wrong!!))

Back to the whole point of this post, Michael will be getting insoles for his shoes, because his foot arches collapse, we are going to be getting exercises to do on a daily basis to strengthen the muscles in his feet, ankles and stomach.....So that little issue........I didn't think was an issue anymore..............Well it appears it is!

I haven't posted for a little while

Mainly because we've been busy trying to return the house to some kind of order, after the builders left. There has been lots of painting, decorating, carpet laying, wardrobe building, and lots of other things going on around here that have just taken up so much time recently, that I just haven't had the opportunity, or I admit the inclination to come in and update!! By the time the kids are going to bed, I'm not too far off following them these days!! I have to say I will be so pleased when it's all finished and things can go back to their proper homes, all the cardboard boxes that things are stored in at the moment have gone, and our house goes back to being our home!!

So please excuse me for having been a bad blogger recently, but I'm hoping to be able to post a bit more often and soon.

So what have we been doing, apart from lots of decorating???? Well the sponge up the nose was removed fairly easily, and the Ear Nose and Throat Dr, at the hospital was very nice about it!! So we didn't get into too much trouble for "allowing" Michael to shove sponge up his nose!!!

The children are all back at school, and F, has started afternoon nursery, which is taking some getting used to for me, because it means that she is around in the mornings, no real problem, I get her into school and as I'm getting back from dropping her off, the oldest one is home for lunch, so at the moment I have maybe an hour a day to do my housework, before I have to go and get them all from school. So I've gone from having a couple of hours a day to myself to an hour!! Does it sound bad if I say I miss that time???

Anyway, cold and flu season is here, well and truly, and has put Michael back into his oxygen at night again.....he's been back in for almost two weeks now. Starting early this year!! But faced with a choice of a little boy who is waking in the early hours and being sick, and then difficult to rouse in the morning for school, complaining of being tired and not feeling well, as he's throwing up everywhere - clearing his lungs so it's not exactly throwing up!! But you get the picture, we'll take the 02 and hope that it's not going to be a rough year this year!

Hmm!!

So DH went to Wales for the day on his motor-bike today, to meet up with some friends, leaving me home-alone with the children............ all was going well........ until Michael struck with his ""thing"" for shoving things in places they shouldn't be.

Last time it was playdoh in the ears....... this time.... it's sponge up the nose!

PICA part 2

Remember the picture of my computer desk - in July??

Well this is it this month!

Barney and Michael

I posted a while ago, about how I could never see the day coming when Michael would tell us he loves us, about how I never thought I would hear those words come from out of his mouth.

Michael has found his own way to say I Love You, and it involves a certain purple dinosaur, and having a chin shoved into the side of your neck, and your head pushed backwards, whilst he sings the following - ok not all of it, but some of it, the rest is kinda mumbled!! But who cares?!?!?!?!


Barney the Purple Dino

Lyrics by Lee Bernstein [BMI])

I love you
You love me
We're a happy family
With a great big hug
And a kiss from me to you
Won't you say you love me too?

I love you
You love me
We're best friends
Like friends should be
With a great big hug
And a kiss from me to you
Won't you say you love me too?

I am a bad mother

In my eagerness to escape the summer holidays, I got Michael up, dressed, all ready and looking forward to going back to school this morning. Only to discover, he doesn't go back till Monday - oooops!!!!

Can I just say I have paid for that mistake!!!

Tears & Tantrums

Yesterday was not a good day, by any stretch of the imagination, we have days where we can go from start to finish with very little upsetting Michael's world. He has the odd falling out/tantrum caused by a disagreement with his siblings. But all siblings fall out, show me a family where it doesn't happen, and I want to know how it's done!!

Yesterday was, what is referred to in this house, as an "A-day". One of those days when the Autism Dx hits home, and hard. One of those days when there seems to be 'nothing' to Michael other than the Autism. One of those days when it is literally tantrum after tantrum, from first thing in the morning until last thing at night; when nothing in his world is right.

Days like these are tiring not only for him, but for everyone, these are days when Michael spends most of his time in tears, screaming, shouting, wailing and lashing out. These are days when everything is wrong and nothing is right, there is no negotiating, no reasoning, no distracting. These are days when the only thing that stops the tantrum, for a short period of time, is getting what he wants.

Trouble with this, giving in to his demands, does him no favours, nor does it do his siblings either, it wouldn't take them long to realise that Michael is always getting his own way, although I have to admit, sometimes the thoughts of anything for a quiet life, appeals more than the thoughts of tantrums for hours at a time!!

The other part of this is, that he doesn't always know what it is he actually wants!! How do you deal with someone who is besides themselves, the pain and anguish is so visible, and yet often he doesn't know what it is he actually wants!!!!

The tantrums yesterday, ranged from wanting the door to the garden shut, with his siblings wandering in and out and leaving the door open, to dissolving because he wanted to watch a music video that wasn't on Play Time! no matter how hard we tried, to explain, to show him, it just didn't work with him - he wanted and that was all he could see.........

Then there were others, just don't ask what they were about because, I have no idea.

These are days I dread, these are days that try patience to it's limits, exhaust coping skills, and these are days, I wonder what any of us did to deserve this.

Is it bedtime yet???

It's 1.30 pm and we're on the 5th tantrum of the day......some days just aren't fun

Maggie and the Ferocious Beast

Hamilton Hocks.

Hamilton Hocks loves music, he's always bursting into song and dance, keeping Maggie and the Beast entertained. He's also a great chef and will easily whip up some delicious treat for Maggie and the Beast when they're hungry. Keeping everything tidy and in it's right place takes up a lot of Hamilton's time. He's also very cautious when they encounter new things and often needs encouragement from Maggie. When he succeeds Hamilton often bursts out with a happy "HOO WEE"

Michael as Hamilton Hocks - Hamilton has a big Cardboard box that he lives in, and keeps everything in!!

Wow

Is it really that long since I last posted on here?? 8th August - I don't believe it's been almost 3 weeks since I last posted anything here.

I have to confess though this is partly due to the fact that we haven't been at home, with everything that has been going on here, plasterer's etc it has been easier to be out of the house.

But I am relieved to be able to say that the building work is now finished and partly decorated....so we're almost there and you don't know just how happy that makes me!!!!

It is so nice to actually feel like I belong somewhere again!!

Welcome to Beirut

WELCOME TO BEIRUT

by Susan F. Rzucidlo

(Beginner's Guide to Autism)

"I am often asked to describe the experience of raising a child with autism-to try and help people who have not shared in that unique experience to understand it, to imagine how it would feel. It's like this.."

There you are, happy in your life, one or two little ones at your feet. Life is complete and good. One of the children is a little different than the other but of course, he's like your in-laws, and you did marry into the family. It can't be all that bad. One day someone comes up from behind you and throws a black bag over your head. They start kicking you in the stomach and trying to tear your heart out. You are terrified, kicking and screaming you struggle to get away but there are too many of them, they overpower you and stuff you into a trunk of a car. Bruised and dazed, you don't know where you are. What's going to happen to you? Will you live through this? This is the day you get the diagnosis. "YOUR CHILD HAS AUTISM"!

There you are in Beirut, dropped in the middle of a war. You don't know the language and you don't know what is going on. Bombs are dropping "Life long diagnosis" and "Neurologically impaired". Bullets whiz by "refrigerator mother" " A good smack is all HE needs to straighten up". Your adrenaline races as the clock ticks away your child's chances for "recovery". You sure as heck didn't sign up for this and want out NOW! God has over estimated your abilities.

Unfortunately, there is no one to send your resignation to. You've done everything right in your life, well you tried, well, you weren't caught too often. Hey! you've never even heard of autism before. You look around and everything looks the same, but different. Your family is the same, your child is the same, but now he has a label and you have a case worker assigned to your family. She'll call you soon. You feel like a lab rat dropped into a maze.

Just as you start to get the first one figured out ( early intervention) they drop you into a larger more complex one (school). Never to be out done, there is always the medical intervention maze. That one is almost never completed. There is always some new "miracle" drug out there. It helps some kids, will it help yours? You will find some if the greatest folks in the world are doing the same maze you are, maybe on another level but a special-ed maze just the same. Tapping into those folks is a great life line to help you get through the day. This really sucks but hey, there are still good times to be had. WARNING! You do develop and odd sense of humor. Every so often you get hit by a bullet or bomb not enough to kill you, only enough to leave a gaping wound. Your child regresses for no apparent reason, and it feels like a kick in the stomach. Some bully makes fun of your kid and your heart aches. You're excluded from activities and functions because of your child and you cry. Your other children are embarrassed to be around your disabled child and you sigh. You're insurance company refuses to provide therapies for "chronic, life long conditions" and your blood pressure goes up. Your arm aches from holding onto the phone with yet another bureaucrat or doctor or therapist who holds the power to improve or destroy the quality of your child's life with the stroke of a pen. You're exhausted because your child doesn't sleep.

And yet, hope springs eternal.

Yes there is hope. There ARE new medications. There IS research going on. There are interventions that help. Thank God for all those who fought so hard before you came along. Your child will make progress. When he speaks for the first time, maybe not until he is 8 yrs old, your heart will soar. You will know that you have experienced a miracle and you will rejoice. The smallest improvement will look like a huge leap to you. You will marvel at typical development and realize how amazing it is. You will know sorrow like few others and yet you will know joy above joy. You will meet dirty faced angels on playgrounds who are kind to your child without being told to be. There will be a few nurses and doctors who treat your child with respect and who will show you concern and love like few others. Knowing eyes will meet yours in restaurants and malls, they'll understand, they are living through similar times. For those people you will be forever grateful. Don't get me wrong. This is war and its awful. There are no discharges and when you are gone someone else will have to fight in your place.

But, there are lulls in wars, times when the bullets aren't flying and bombs aren't dropping. Flowers are seen and picked. Life long friendships are forged. You share and odd kinship with people from all walks of life. Good times are had, and because we know how bad the bad times are, the good times are even better. Life is good but your life in never normal again, but hey, what fun is normal

Too Young to live???

Click on this link to listen:

http://www.bbc.co.uk/radio/noscript.shtml?/radio/aod/fivelive_aod.shtml?fivelive/flreport_young

To listen you will need to have a programme called RealPlayer installed on your computer. Download it for FREE from our audio help page - http://www.bbc.co.uk/radio/audiohelp.shtml

This is a link to the Radio Report we took part in on the 31st June 2005, I'm trying to work out how to save it, and turn it into a file, but I'm not having much success at the moment.

There was talk of phoning me whilst the programme was being broadcast - all I can say is it's a shame that never happened, because that would have given listeners a real insight into what life with Michael can be like!! He was wailing, totally inconsolable, why??? Wish I knew!

I guess it's safe

to confess about this now. DH and I were interviewed a few weeks ago for a programme on BBC Radio 5. It's due to be broadcast this Sunday.

Radio 5


10:00 The Worricker Programme
Investigative journalism, current affairs, politics and showbiz gossip, with Julian Worricker.
Includes the Five Live Report, with Rebecca Sandles. Have your say - text 85058 [network rates apply]

Too Young to Live? An increasing number of children are suffering from serious disabilities, such as cerebral palsy or very low IQs, because medical advances meant that although they were born extremely prematurely, they were kept alive. Recent research shows that those born at less than 25 weeks are highly likely to have a disability - almost half will have severe or moderate disability.

Some parents now say it is cruel to keep these babies alive, that they should be left to die. Others believe every child must be given a chance. In whose interests is it to keep very premature babies alive? And should doctors or parents be the final arbiters of who lives, and who dies?

Spooky!!

Will I ever get used to this do you think???

It still takes me by surprise when I come across one of Michael's little "lining up" sessions!!

Goat Boy

We have been away since Monday, we went to Grandma's for a couple of days!

Tuesday we went to a farm near Lincoln, the kids love it here, they have a lovely selection of animals some in pens and some wandering around, and with it being summer lots of babies!!

Michael was really taken with the goats, so we bought some animal feed and Michael fed the goats.

See the one he's feeding in the picture?? Well I decided I was going to feed some of the smaller goats, and this one, well she wasn't very impressed with my feeding the babies.......so she bit me! I have a nice bruise on my arm to show for it too!!

Anyway we got back today, and it was 3 hours of torture on the way home, almost crashed the car, whilst yelling at Michael, for kicking his brother!!! How do you control a child who is at the back of the car, (right at the back of the car, so he can't open doors and windows!!) who seems to almost have been taken over by some other being, i.e. developed two horns and a tail, and is screaming, yelling and generally pushing all the right buttons!! Michael knows just which buttons to push in order to wind others up; especially his oldest brother, and very, very successful at it he is too!!

My stress levels through the roof...doesn't help that I've been away for 4 days and forgot to take my tablets with me when we went away! Ooooops!! As the days passed I could feel my coping skills lessening...

When we got home the house is in chaos!! Me thinks it was perhaps not a good idea to have come back!! So I think we may well be going away again at the weekend, and leaving Dad at home with the builders!

I have to say though the extension is looking great, all the scaffolding is down, the windows are in, and the partition walls are down, so we can now get into the new part of the house! I've posted some pictures below.

The Plasterers come in Monday, I think we need to be away whilst the walls are being plastered, because I can see the "art work" that could well appear before the walls dry!!

Sheep!!

I forgot to post this picture of Michael feeding the sheep at the farm!

Extension

Extension from the back.

The New Family Room!!

Pica

This is my computer desk!! Guess who???

Tomorrow

Is the last day of freedom, as it's the last day of school for the summer holidays, how am I going to get through the next 6 weeks, with my sanity still intact!!

Finished Roof!!

At last the roof is finished!!

Ever have

One of those days where you end up wishing you'd pulled the duvet up in the morning, and not bothered getting out of bed??

Been one of those days today!! Please don't ask what it's all about, because I'm not 100% sure myself. The mood has not been good today, and I'm glad it's over, and the kids are in bed. Not sure I'll be up for much longer myself tonight, I just want to go and sink into a deep sleep, where it all disappears around me, and I don't have to deal with it.

Some Mothers

So I was wandering around the My Documents Folder in my computer tonight, I have so much in there that I need to get sorted out, delete, save, put in the right place etc, I was looking for some research into outcomes for premature infants when I came across this. Now I don't seem to have saved who wrote this so I can't credit it to anyone, so if it was you, I appologise for not having been able to credit it. Infact I don't even remember where I found it.

But it is another one of those things written along the same lines as "Welcome to Holland"


Some Mothers Get Something More.


Expectant mothers waiting for a newborn's arrival say they don't care what sex the baby is.
They just want it to have ten fingers and ten toes.

Mothers lie.

Every mother wants so much more. She wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin. She wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly. She wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two).

Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class. Call it greed if you want, but a mother wants what a mother wants.

Some mothers get babies with something more.

Maybe you're one who got a baby with a condition you couldn't pronounce, a spine that didn't fuse, a missing chromosome or a palette that didn't close. The doctor's words took your breath away. It was just like the time at recess in the fourth grade when you didn't see the kick ball coming and it knocked the wind right out of you.

Some of you left the hospital with a healthy bundle, then, months, even years later, took him in for a routine visit, or scheduled her for a well check, and crashed head first into a brick wall as you bore the brunt of devastating news. It didn't seem possible. That didn't run in your family. Could this really be happening in your lifetime?

I watch the Olympics for the sheer thrill of seeing finely sculpted bodies. It's not a lust thing, it's a wondrous thing. They appear as specimens without flaw -- muscles, strength and coordination all working in perfect harmony. Then an athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler. There's no such thing as a perfect body. Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, therapy or surgery.

Mothers of children with disabilities live the limitations with them. Frankly, I don't know how you do it. Sometimes you mothers scare me. How you lift that kid in and out of the wheelchair twenty times a day. How you monitor tests, track medications, and serve as the gatekeeper to a hundred specialists yammering in your ear.

I wonder how you endure the clichés and the platitudes, the well- intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike.

I even wonder how you endure schmaltzy columns like this one -- saluting you, painting you as hero and saint, when you know you're ordinary. You snap, you bark, you bite. You didn't volunteer for this, you didn't jump up and down in the motherhood line yelling, "Choose me, God. Choose me! I've got what it takes."

You're a woman who doesn't have time to step back and put things in perspective, so let me do it for you. From where I sit, you're way ahead of the pack. You've developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, counter-balanced against the stubbornness of an Ozark mule.

You are the mother, advocate and protector of a child with a disability. You're a neighbor, a friend, a woman I pass at church. You're a wonder.

Sports Day

It was sports day at school yesterday, unfortunately the schools around here don't seem to be very well coordinated, so not only was it Michael's sports day, but it was J's sports day as well!! Both at the same time, at different schools, in different towns!!

Last year I only had to run between opposite ends of the same school field!! This year I was thinking there was no way, I was going to be able to do both!!

Any ideas as to how your supposed to split yourself in two, so that you can be at both sports days at the same time!

When DH returned home Monday night, from his weekend away. I thought he would be going straight to work, (first night shift), but it turned out he'd taken the night off, which meant he was around yesterday, so he went to Michael's sports day, and I did J's...BIG sigh of relief!!

I can't tell you a lot about Michael's sports day, except that he got a sticker for every race that he took part in. He did well, and seemed to enjoy himself!! (Oh and DH took part in a lot of the races too, apparently photo's to follow!!)

Anyway back to Michael, he loves stickers, and DH came home recounting a tale of "one sticker here, one sticker there, one over the eye" - "I'm a pirate" until the stickers lost their sticky!

This was lots of fun, until the teacher wanted Michael's stickers.

She wanted them because the stickers they get for taking part, are supposed to be stuck to a piece of card.....which they then laminate, and the child brings them home as a certificate!

So when it came to handing over the stickers, things fell apart !!!

Bliss Research

Bliss have done some research into the shortage of nurses in neo-natal units and the effects that this is having on premature babies, you can read the report here


Probably going to make myself really unpopular here, but to be honest I'm used to it, having spent the last 5 or so years fighting everyone in sight, to get Michael the support and services that he needs, that we need as a family in order to survive.

I realise Bliss is a Charity that works to improve things for babies in Neo-natal Units, and the whole idea behind this research was to show that things are not good for these special and vunerable babies. I'm not saying it's wrong to save these little ones, so don't take this the wrong way, it's just these little ones don't stay little ones forever, they grow up. Stating the obvious -yes, I know!

Who fights for these babies when they're no longer babies?? Who out there is trying to improve things for those babies that grow into children with special needs?? Who is doing the research and speaking out about the lack of support and services available to families pushed to the edge of crisis, because they are dealing with the fallout??

I know I'm not the only mum who has a child who survived the whole neo-natal experience with long term implications and complex needs, but sometimes it feels like it.

Music

It's funny how music can mean so many different things to different people. I've added a video of Rob Thomas, "don't wanna be lonely anymore" to the blog, if you don't like it you can always switch it off. Please feel free too.

I bought the album at the weekend, I've heard the song on the radio in the car a few times, I have to say I fell in love!! Ok so I know absolutly nothing about this guy, where he's come from, what he was doing previously etc. But I love this song!!

Ok, so back to the point of this post...the song...listen to it, yes it's about relationships, but in my twisted little world, I can relate to so much of it, in our experience of raising Michael. Ok so now you all know, I've well and truly fallen off the planet!!

So which bits do I mean! Please let me explain!!

"Now it seems to me
that you know just what to say
but words are only words
can you show me something else,
can you swear to me
that you'll always be this way
show me how you feel
more than ever,

i don't wanna be lonely no more
i don't wanna have to pay for this
(*i don't wanna another 'Dr' at my door*)
its just another heartache on my list,
i don't wanna be angry no more
but you know i could never stand for this.
I don't wanna be lonely no more"

*not the right words - but catch my drift!!!

I think anyone who reads this, or know's me, or has visited Michael's website will know that we didn't have a good time of it through NICU etc. and you'll know how we ended up feeling let down and to a certain extent I feel lied to...so maybe the words should go more like this!!

Now it seems to me
that you know just what to say
but words are only words,
can you show me something else
can you swear to me
that he won't always be this way,
tell me what you mean

i don't wanna be lonely no more
i don't wanna have to pay for this
i don't want another professional at my door
it's just another heartache on my list
i don't wanna be angry no more
but I know I can't stand for this
so when you tell me that you can help me
know for sure.

Ok so singer song writer I am not and sometimes I just wish I could express how things really are, like the Holland Schmolland post!!

I would love to be able to create something like that!

Hot!

Well what a weekend, I know I've not written much around here this last week or so, but it's been fairly busy, and I have to admit to falling asleep fairly early!!

It will be another early night tonight too, daughter dear was up at 2am, then I had to get up at 3.30am to get oldest son to school for 4am for his school trip to the Rhineland, Germany, I got back from seeing him off at 5am, to be woken at 6am by number 2 son!! Tired!! Just slightly!!

We spent the day in the paddling pool, (yes me too!!) and the garden today, wow it has been so hot, and despite factor 50 sunblock for the kids, Michael seems to have caught the sun on his back! ---- One very embarrassed Mum here!! So after bath tonight I have smothered the kids in aftersun, and please, fingers crossed, for a good night!! He'd not burnt, just a little pink, which I have to say is fairly unusual for Michael, normally he just goes a golden brown colour!

Only one more week to go before they break up for the summer holidays, if the weather stays this way it's going to be a wonderful summer break!! Especially with the ongoing building work and scaffolding etc.............how on earth am I expected to keep the kids indoors!! I just don't even want to think about it!

On another note, I am on my own again this weekend, apart from last night when my sister stayed over.

This is also the other reason I wasn't able to get near the Computer during the last week or so; it's been otherwise occupied, route planning, places to go, and things to see!!
DH is off with his two-wheeled mistress to the wilds of Scotland - He's gone to Fort William, one area of Scotland I've not been to yet, and I am insanely jealous as I would love to go. I have driven past the signs for Fort William but never actually managed to make it down into the town! Maybe one day!!

Centiles

I've received a written copy of Michael's clinic report from our appointment with the Community Paed on the 5th July!!

Height - 50th Centile, Weight - 50th Centile.

How can Height and Weight differ so much in two days - Given that on the 7th July he was assessed as being 25th for Height and 75th for Weight???

ICE Campaign

East Anglian Ambulance Service have launched a national "In case of Emergency (ICE)" campaign with the support of Falklands war hero Simon Weston, and in association with Vodafone's annual life savers award.

The idea is that you store the word "ICE" in your mobile phone address book, and against it enter the number of the person you would want to be contacted "In Case of Emergency".

In an emergency situation ambulance and hospital staff will then be able to quickly find out who your next of kin are and be able to contact them. It's so simple - everyone can do it.

Resp Appt and other things

I should have posted this last Thursday, but it didn't seem appropriate, with everything that was happening in London. I was ironing, the house was empty, all the children in school and I thought I'd have some normality, catch up on the ironing and watch day-time T.V. no day-time TV just the news as events unfolded. The builders were putting in floor boards in the new bedroom - ok, so maybe not really an empty house, but as close as we get at the moment.

Thursday afternoon, Michael had an appointment with the resp consultant, it was a good appointment, according to their scales Michael is now on the 75th centile for weight whilst just below the 25th for height so we're talking about next time cutting back on the calories. We've had to increase the amount of fluids he gets in the hopes that this may water down some of his weight gain. Do the words diet and preemie's go together??

We also saw a neo who looked after Michael from 11 weeks of age when he was transferred there for his hernia surgery, and possible laser eye surgery. This Neo also became Michaels Cardiologist as he was the Consultant who scanned Michaels heart and discovered the ASD and the Pulmonary Stenosis. I have all the time in the world for this Dr, he is a lovely caring guy, who always treated us as equals, and made sure he found the time to explain what was happening with Michael. I guess he is also the reason we realized just how badly we had been treated, and how neglected we'd been at the other NICU.

Anyway, this wonderful guy has the most amazing memory, please bear in mind that he only became involved in Michaels care when he was 11 weeks old, and that he discharged Michael almost 3 years ago, the number of patients that he has, and see's, and he not only remembered us, but we had a very interesting conversation about how he'd only been talking about us the week before. It was lovely to see him again, and I guess he makes me realize that there are some wonderful people who work for our Health Service!

Wanted to share!

I found this poem on a forum I belong to for children with Special Needs......I just wanted to share!

Welcome to My Home....I think

by: Sharon Burleson, Clarksburg, WV

Welcome to my home. I think, I mean, maybe your welcome. I'm not sure yet.

When I get to know you, I'll know for sure. My child is disabled, and I need help to do all the things he needs done.

So I need you. He needs you too, because he gets worn out and bored with me, and sometimes he dislikes me about as much as I sometimes dislike him (please don't start making judgments about me -- we just got started. It's just that I'm honest, and as much as he is the sole reason for my existence, there are times when both of us wear thin).

Your agency sent you here. I called for help, but I don't get a choice who comes into my home and my life. You come at your convenience, usually between 9am and 3pm Monday thru Friday. I'm on my own evenings and weekends, when my other children tug at me, and want, and feel slighted, and offended, and I feel stretched to my limit.

You call and tell me your coming Tuesday morning, so I put the stack of unanswered mail, and the unpaid bills in the cabinet with the cereal bowls, race dirty and clean clothes up and down the stairs, shove toys and unmated shoes in closets and under beds, and run the gauntlet with 'Fantastic' to get fingerprints off everything. And then you call, and tell me you have to cancel, because of a meeting.

Oh, sure I understand, yes that's fine, Friday afternoon? Well, I was going to try to go to the library and maybe take a nap.......What? Oh, that's the only one you have? Well sure, I know it's important that you come. And we really need help. Fine....Friday at 1.30......We'll be here.

My husband resents people coming in and out of our home. He says he feels like he is living in a goldfish bowl. He says getting help means sacrificing our privacy and spontaneity. He can't scratch his stomach as he walks down the hall in his shorts anymore. Now he has to have clothes on, and suck in his gut, and put on company manners. And he hates it after you leave, because sometimes I cry, because I feel inadequate, and stupid, and foolish, and just plain wrong.

Sometimes you make me feel that way, when you act suspicious of what goes on when your not here, and try to trip me up, when we're talking, to find out if I'm doing the goals and objectives, or if I'm just taking the money and fudging the paperwork. Sometimes it's nothing you say or do, it's just that your perfectness unsettles my motherness. Sometimes when you are great I feel threatended, and because of others who came before you, I feel judged, and talked about, and as though you have met with others, and have developed a plan to implement on me.

I can't always tell when you're real, but my son can. So I watch him. If he responds and welcomes you, then I set aside my needs and cares, and let you have everything I have....including my son. I have to trust you, because he trusts you, and looks forward to your step on the porch.

What? Oh, good grief! I forgot your paperwork again! Wait,

I know it was here somewhere. I was working on it last week, just after the hot water heater burst, and right before my husband came home laid off.

Wait.....I think I wrote on the back when the bank called about the deposit to cover the overdraft. Yeah! I found them! Right behind the peanut butter, wait..... I'll just wipe them off a bit.

You know I used to be normal. I used to have control over my life, my time, my home. Having a disabled child turned my life upside down.

My priorities changed, what I would settle for changed, what I would ask for changed, who I would accept changed. All that changed because my child needs things, and people and idea's, and funding. So my life consists of meetings, regulations, documentation and paperwork, social workers and agency people. Policies and procedure mauals, and administrative decisions, delays and rumours of delays in checks. People not showing up when needed, people quitting and people showing up when they're not needed.

Please, don't judge me, and I'll try not to judge you.

You see in the long run, if I don't measure up, I am still his mother. So we're stuck with each other, and I'm willing to make the best of it. Help me to grow, help me to become better.

Accept me as a person, not the perfect saint.

I really DO know my child better than anyone else, so help me express that and put it to best use.

Walk with me a ways, not to judge me, but to understand my role within the heart of my family. Give me tools and words, and people, that like pieces in a jigsaw puzzle, interlock to allow for my strengths and compensate for my shortcomings.

Please don't push me past my endurance, because if you do, you'll see me at my worst; short-tempered, impatient, inflexible, and emotional. I'm no good to my son then, either. Each one of us has that fine line.

I try to recognise when I'm approaching my line, and usually that's when I'm most cranky and complaining to you. Please realize that one facet of me is the tired bitch, just as real and acceptable as the superwoman who overcomes unbelievable obstacles.

There are sunny days and then there are thunderstorms..... all part of a temperate climate.

Well, anyway, hi. Welcome to my home. I think

Why are we cuddling??

Michael got out of the bath this morning, I've dried him off, and got him dressed, the first of many times I'll dress him today! Until I get fed up of re-dressing him, and then it will be birthday suit as usual.

He's playing 'boats', he's trying to climb up the end of the bunk-beds, and managed to get himself stuck. You could see it in his face, "now how do I get myself out of this one??"

I sat there watching him and knowing he was stuck, I waited for him to say, "Stuck" or "help"........but it never came, so I offered it. "Michael want help" (using the sign for help!)

Yes!!

As I was lifting him off the bunk bed I sat on the other single bed in the room, and pulled him down on top of me to give him a cuddle. His response! "W, W, W, W, W, Why having cuddle??"

When I said "it's nice to have cuddles, do you not like cuddles??" he just replied "Get up now" and left!

Sometimes I forget where we live!

Stuttering

Michael has developed a stutter, or maybe it's a stammer. It's appeared over-night, more or less, either that or it hasn't been as noticeable as it is now.

I rang the Speech and Language Therapist at School at the beginning of the week about it, just to see if it had been picked up at school or if it's just something he's doing at home. Turns out his class teacher has noticed, the SALT spent sometime with Michael, and is going to refer him to a SALT who specializes in dealing with children with stammers/stutters. It has been suggested that we speak really slowly to him and slur our words like we're drunk - pass the gin- far easier when you are drunk!!

As I said it has appeared from no-where, he didn't struggle like this 3 weeks ago, and suddenly it is taking him a long time to get out what he's trying to say. for example "I, I, I, I, I, I, I, I want juice" or he's left standing there with his mouth open and not a sound escaping from his lips! You can see the frustration in his face, as he tries to almost work out what it is he's trying to say.

I just think it's really odd, they did say that it can sometimes be a developmental stage that kids go through, especially when their vocab is fast expanding. But although 18 months ago, Michael was classed as non-verbal, his vocab has expanded over the last 18 months. It isn't new words he's struggling with it is every day words, like "I, is, want"

I wonder if it's tied in with his oro-motor issues, but part of me wonders if that was the case then surely this would have been happening since he started talking.

Watch this space on this one!!

Schmolland or Holland!

I always thought I'd ended up in Holland, however having read the article underneath, I fast realised I'm in Schmolland!

I've put both the poem by Emily Pearl Kingsley, and the article by Laura Kreuger Crawford

Enjoy!!

Holland or Schmolland for you??

Holland Schmolland

Holland Schmolland

by Laura Kreuger Crawford

If you have a special needs child, which I do, and if you troll the Internet for information, which I have done, you will come across a certain inspirational analogy. It goes like this:

Imagine that you are planning a trip to Italy. You read all the latest travel books, you consult with friends about what to pack, and you develop an elaborate itinerary for your glorious trip. The day arrives.

You board the plane and settle in with your in-flight magazine, dreaming of trattorias, gondola rides, and gelato. However when the plane lands you discover, much to your surprise, you are not in Italy -- you are in Holland. You are greatly dismayed at this abrupt and unexpected change in plans.

You rant and rave to the travel agency, but it does no good. You are stuck. After awhile, you tire of fighting and begin to look at what Holland has to offer. You notice the beautiful tulips, the kindly people in the wooden shoes, the french fries with mayonnaise, and you think, "This isn't exactly what I had planned, but it's not so bad. It's just different."


Having a child with special needs is supposed to be like this -- not any worse than having a typical child -- just different.

When I read this my son was almost 3, completely non-verbal and was hitting me over 100 times a day. While I appreciated the intention of the story, I couldn't help but think, "Are they kidding? We're not in some peaceful country dotted with windmills. We are in a country under siege -- dodging bombs, boarding overloaded helicopters, bribing officials -- all the while thinking, "What happened to our beautiful life?"

That was five years ago.

My son is now 8 and though we have come to accept that he will always have autism, we no longer feel like citizens of a battle-torn nation. With the help of countless dedicated therapists and teachers, biological interventions, and an enormously supportive family, my son has become a fun-loving, affectionate boy with many endearing qualities and skills. In the process we've created . . . well . . . our own country, with its own unique traditions and customs.

It's not a war zone, but it's still not Holland. Let's call it Schmolland. In Schmolland, it's perfectly customary to lick walls, rub cold pieces of metal across your mouth and line up all your toys end-to-end. You can show affection by giving a "pointy chin." A "pointy chin" is when you act like you are going to hug someone and just when you are really close, you jam your chin into the other person's shoulder. For the person giving the "pointy chin" this feels really good, for the receiver, not so much -- but you get used to it.

For citizens of Schmolland, it is quite normal to repeat lines from videos to express emotion. If you are sad, you can look downcast and say, "Oh, Pongo." When mad or anxious, you might shout, "Snow can't stop me!" or "Duchess, kittens, come on!" Sometimes, "And now our feature presentation" says it all.

In Schmolland, there's not a lot to do, so our citizens find amusement wherever they can. Bouncing on the couch for hours, methodically pulling feathers out of down pillows, and laughing hysterically in bed at 4:00 a.m. are all traditional Schmutch pastimes.

The hard part of living in our country is dealing with people from other countries. We try to assimilate ourselves and mimic their customs, but we aren't always successful. It's perfectly understandable that an 8 year-old from Schmolland would steal a train from a toddler at the Thomas the Tank Engine Train Table at Barnes and Noble. But this is clearly not understandable or acceptable in other countries, and so we must drag our 8 year-old out of the store kicking and screaming, all the customers looking on with stark, pitying stares. But we ignore these looks and focus on the exit sign because we are a proud people.

Where we live it is not surprising when an 8 year-old boy reaches for the fleshy part of a woman's upper torso and says, "Do we touch boodoo?" We simply say, "No, we do not touch boodoo," and go on about our business. It's a bit more startling in other countries, however, and can cause all sorts of cross-cultural misunderstandings.

And, though most foreigners can get a drop of water on their pants and still carry on, this is intolerable to certain citizens in Schmolland, who insist that the pants must come off no matter where they are and regardless of whether another pair of pants is present.

Other families who have special needs children are familiar and comforting to us, yet are still separate entities. Together we make up a federation of countries, kind of like Scandinavia. Like a person from Denmark talking to a person from Norway (or in our case, someone from Schmenmark talking to someone from Schmorway.), we share enough similarities in our language and customs to understand each other, but conversations inevitably highlight the diversity of our traditions. "My child eats paper. Yesterday he ate a whole video box." "My daughter only eats four foods, all of them white." "We finally had to lock up the VCR because my child was obsessed with the rewind button." "My son wants to blow on everyone."

There is one thing we all agree on. We are a growing population. Ten years ago, 1 in 10,000 children had autism. Today the rate is approximately 1 in 250. Something is dreadfully wrong. Though the causes of the increase are still being hotly debated, a number of parents and professionals believe genetic predisposition has collided with too many environmental insults -- toxins, chemicals, antibiotics, vaccines -- to create immunological chaos in the nervous system of developing children. One medical journalist speculated these children are the proverbial "canary in the coal mine", here to alert us to the growing dangers in our environment.

While this is certainly not a view shared by all in the autism community, it feels true to me.

I hope that researchers discover the magic bullet we all so desperately crave. And I will never stop investigating new treatments and therapies that might help my son. But more and more my priorities are shifting from what "could be" to "what is." I look around this country my family has created, with all its unique customs, and it feels like home. For us, any time spent "nation building" is time well spent.

-- The End --

Welcome to Holland

Welcome to Holland

By Emily Pearl Kingsley

I am often asked to describe the experience of raising a child with a disability.

To try to help people who have not shared that unique experience to understand it, to imagine how it would feel.............

It's like this................

When you're going to have a baby. It's like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make wonderful plans.

The Coliseum, The Michaelangelo David, The Gondolas in Venice. You may even learn some handy phrases in Italian, it's all very exciting.

After months of eager anticipation, the day finally arrives, you pack your bags and off you go. Several hours later the plane lands. The Stewardess comes in and says "Welcome to Holland".


"Holland?!?!?!?" you say, "What do you mean Holland????? I signed up for Italy. I'm supposed to be in Italy, all my life I've dreamed of going to Italy"

The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease.

It's just a different place.

So you must go out and buy new guide books. You must learn a whole new language, and you meet a whole new group of people you would never have met.

It's just a different place, it's a slower pace than Italy, less flashy than Italy.

But after you've been there a while you catch your breath, you look around and you begin to notice that Holland has Windmills, Holland has tulips, Holland even has Rembrandts.

Everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there, and for the rest of your life you will say, "Yes that's where I was supposed to go. That's what I had planned."

The pain of that will never, ever go away, because the loss of that dream is a very significant loss.

But if you spend your time mourning the fact that you didn't get to go to Italy, you may never be free to enjoy the very special, and the very lovely things about Holland.

Hmmm

So when it's thundering and lightening outside and it's raining hard, what do you do??

You go swimming!!!!

Happy Birthday J

Happy Birthday J.

I can't believe my baby is 7 already, where does the time go???

Hope you have a wonderful day sweetheart!

So

Did I tell you about the new ornament we have in our garden??? It is this year's must have, well it is if you have builders!

Well someone decided they didn't like my new ornament in the upright position and decided to push it over!!

What's my ornament??? One of these!! Meet Looie!!!

It is now laid on it's side in the front garden, and who was responsible for this, about half a dozen kids, and if it takes that many to push it over I've got no chance of being able to lift it back into the upright position!!

Report from the Neuro

I did post a little while ago about how I couldn't find the telephone number for the Neuro, because in amongst all my packing I'd managed to forget where I'd packed all the info on Michael. Anyway I did ring, and I did ask what had happened to the report, and was promised it would arrive as soon as possible, well it arrived, at the beginning of June, and I've been meaning to post something about it, but in amongst all the confusion that is life at the moment it just hasn't happened:

Results were as follows:

MR Brain Imaging:

There was some reduction in peritrigonal white matter bulk.

Bulbar EMG:

There was definite evidence on EMG that there has been reinnervation, and that therefore there is a bulbar palsy. The absence of the later components of the blink reflex is also evidence of a disturbance of the brain stem.

Discussion with Parents

Current investigations, particularly the bulbar EMG confirm there is an underlying neurological basis for Michael's feeding difficulties. He has evidence of a bulbar palsy on the electrical studies and this has affected his pharengyl stage of swallowing, leading to compromised swallow safety and risk of aspiration.

Although there may be some changes to his swallow function over time, generally when there is neurological disturbance of the messages from the brain stem to the muscles and the nerves controlling chewing and swallowing, we recognise that this is permanent, and therefore Michael will always have some degree of oromotor difficulty for feeding.

In terms of the scan findings, these are subtle changes and are often the pattern of change we see with prematurity. Sometimes we associate loss of white matter bulk or nerve tracts with motor or physical difficulties.

Cath

Just for you - pics of demolished house!!

Back home now!!

So we got home on Thursday, Michael couldn't wait to get home, he'd had lots of fun, but I think he was getting to the stage where enough was enough, and wanted to come home!

To be honest so had I, it's nice to go back home and be with my parents and in the area that I grew up, but nothing beats coming home, and being in your own house with your things around you.

Thing is half the walls were missing when I got home!! I started to think maybe I should have stayed where I was!!

So it is

10.30pm my daughter went to bed almost 3 hours ago, and she is still playing up and creating!! Up bright and early tomorrow for school!!

We've been away.......

So really..........we are still away! We moved out for a few days and left DH at home with the builders for company!

I think I mentioned that they were going to put in a metal beam across the ceiling in my bedroom, the thoughts of all the dust etc. and the damage that it could reak on what are already very delicate lungs, it seemed the most sensible thing to remove the kids from out of the house. (Didn't go down too well with certain schools, who object to their pupils taking holidays in term time, that and they didn't get 3 weeks required notice!! But that's a whole other post!!!)

Ok....as I said seemed like a good idea at the time, from Michael's lungs point of view probably the best idea....from my sanity's point of view - BAD MOVE!!

We arrived Saturday, and we've had a great time, although I must admit the weather hasn't been the best, Sunday we did Brocklesby Steam Rally, and Monday we went to The Deep. (I promise to post some photo's when I get home!)
Yesterday and today due to bad weather, we stayed home, baked and built models with maize. So it's been a good few days, but they have been long days, and stressful nights.

Night-time has been a nightmare! 10pm tonight, Michael was still wide awake, his sister having only just gone to bed, & this is a quiet night.

Last night it was 11pm before they all went to sleep, the night before just short of midnight, and Michael awake at 4am being sick!

Can I say I'm really looking forward to getting home tomorrow and getting them back into their own beds!! I am really hoping that they will go back to early bed-times and going to sleep at night. I may have a battle on my hands!!

Any ideas????

BTW: if your interested, it looks like Hubby had a good time over the weekend.........click here
I'm seriously contemplating joining the forum he belongs to, as "guzziwidow" - just to keep up with what's going on in my husbands life. Yes I'm pee'd off, and yes I would seriously like to remove the wheels from his machine and lose them. Does it show!!