A Preemie's Journey from Early Birth to Special Needs

2007 ~ 2010

2010-11-08T21:37:00.004Z

I can't quite believe that 3 years have passed since I last posted here, and that my little man will be 11 in around 19 days time ~ where does it go? I really do need to make more of an effort.

Michael continues to go from strength to strength, and continues to amaze us. He is a lovely child who enjoys life and developmentally has come on in leaps and bounds, he still attends a school for children with ASD and Learning Difficulties, but has amazed the medical professionals involved in his life at just how well he has developed. As his Resp said a little while ago, "that's the first conversation I ever had with Michael." Michael views this Dr as his best friend, and is always really pleased to see him, on this occasion he wandered down the hospital corridor holding his hand and discuss the latest episode of Dr Who, you just got to know what to talk about!! Michael lives in a world of Dr Who and Sarah Jane Adventures, so mention those and he'll talk for hours! He loves playing Lego, and Playmobile figures, the adventures they have with the Dr in his Tardis.

Its been an eventful 3 years in more ways than one, too much to go into here in any real detail, but there are times during the last 3 years when I really could've done with here to vent my spleen at (as they say!!) The respite we spent so long waiting for, (almost 6 years) lasted all of about 6 months, before the wheels fell off and we found ourselves embroiled in a bitter war of words with the local authority......the long and the short ~ we gave up in the end, there's only so much talking to yourself you can do!

Update

2007-11-07T13:47:00.000Z

This is the update I promised months ago!

It's quite honestly been a bad year this year, firstly with my own health, and having had viral meningitis which wiped me out for months, and I still get the occasional pain in my neck/back of my head which knock me out for 24/48 hours. I've also developed some other issues that my GP has decided is stress! So I'm now on reflux med's too, although mine are a stronger dosage than Michael's!!

Since I last posted Michael had his tonsils and adenoids removed at GOS, our over-night stint in hospital turned into a 4 day extravaganza!! Floppy airways tend to close off when there is nothing to support them, SAT's levels through the floor and 02 requirement through the roof!! This was followed a week later by a re-admission for bleeding; (We we're the less than 1% they mentioned when the discussed the possibility of a re-bleed.)

He's still in 02 at night, still has those big dark patches around his eyes and still has a runny nose - all the things we thought would go once his T&A's had been removed!

We've had another sleep study done which showed that Michael still has Obstructive Sleep Apnoea, admittedly it's better than it was before the T&A's were removed , but it's still there.

We also had a repeat videofluroscopy done - to see if removing the T&A's had improved things in the swallow department. I was quite optimistic, at the time when the SALT told me things looked good - but then the report came through which showed basically nothing has changed, there's no improvement.

We've also been through a stage of removing the reflux medication because he should have "grown out" of it now - and we've had to put him back on, so we have an appointment this month with the Gastro, be interesting to see what she says!

Back to see the Resp in December - be interesting to see what he has to say too, as it's our first appointment since the results of the sleep study came back!

Things have

2007-07-12T13:08:00.000+01:00

been a little chaotic around here recently, and this is one of those things that slipped! As has Michael's website http://www.michaelrigaud.co.uk/

I am hoping to spend some time next week updating both here and the website - please come back soon

So much for

2007-03-20T23:08:00.000Z

My New Year's Resolution that I would post regularly on here!!

Shortly after I made that post back in January I came down with some kind of virus, believe me when I say it has taken me this long to get over it!! Someone I know mentioned the words man-flu!! My Doc wanted to know if I'd been a car accident because he thought I had whiplash injuries to my neck. I hadn't....but I did do an awful lot of sleeping!

Now I am back on my feet, I am planing on updating things around here more frequently. We have a busy couple of months coming up with sleep studies and surgery!

So watch this space!

Update 3 - Lung issues

2007-01-13T23:01:00.000Z

When I last posted here, Michael had just gone back into oxygen at night, and I was really struggling to comprehend how at 6 he'd ended up back in 02. I may be wrong but most prem babies have long since lost their 02 concentrators by now; and I had really hoped that we would be waving that machine good-bye once and for all this year, but the overnight SAT's reading kinda put pay to that - at least for the time being.

So here we are some 8 months later and Michael is still in 02; and due back to see the ENT next week.

Following his surgery an over-night trace was repeated, which was excellent, Michael did really really well....the suggestion was to try him without 02 for two weeks to see how he went; can't say I was very happy at that suggestion, because I wasn't convinced that it was a proper reading done when Michael was imobile and just after surgery but what do I know? I may have been way off the mark in thinking that this perhaps wasn't/wouldn't be a "true" reading.

By the end of the second week off of 02 we had a child on our hands who couldn't walk far without tiring and was wanting to be picked up, whose energy levels had fallen, to the point where he was spending most of his time laying about. Fortunately it was school holidays so we could let him sleep in, in the mornings, and it didn't really matter that he was tired, and less than co-operative. So back into 02 he went...........

Since then I've taken Michael out of 02 for a week and monitored his SAT's levels, the night after he came off of 02 he did perfect 96%, and I was doing the happy dance, by the end of the week, he was spending longer and longer periods below 90 - with an increase in heart rate attached too.

We have been referred to one of the London Hospital's for a Polysomnography The hope is that this will show just what is going on whilst Michael is asleep, so we are currently waiting for our date to come around for this.

We were also referred for full lung function testing, this involved Michael sitting in a box, about the size of a telephone box, and breathing into a tube, amongst other things. We don't have the full results of this testing yet, and won't until our next visit with the Resp in February.

So I guess you could say our Lung issues are still ongoing!

Update 2 - Sleep issues

2007-01-13T22:35:00.000Z

There was some talk of the possibility that Michael had Obstructive Sleep Apnoea

Arrangements were made for us to see an Ear Nose and Throat Surgeon, (ENT) at one of the Children's hospital's in London, we saw him in July.

This was another journey round the houses in the medical world, because we deal with different Health Authorities there is a question of funding, so we have to go from A via B to C, when for some things we are already at C, or we can go straight to Z. The best part is the Dr at A can't refer us directly to C, the hospital who know Michael so well and have been involved in his life since he was 11 weeks old - but they can to Z. Which is a completely different hospital that has had minimal imput since he was 4!

Anyway we saw the ENT, who recommended that Michael have his tonsils and his Adenoids removed, we received a date for Surgery in October.

Long story short, surgery; we were informed the day before, had been cancelled, when a letter dropped through the front door, this letter had been sent to everyone involved in Michael's care explaining why surgery had been cancelled a week earlier.

There seems to be some discussion going on as to what Michael's sleep issues actually are, the Resp is saying that he doesn't actually think Michael's sleep issue are actually anything to do with his tonsils and adenoids, but infact are down to lung issues. So the ENT wanted to review the results of the sleep study before surgery.

Although I was glad surgery had been put on hold, because if it's not necessary then there is no point in doing it, but I have to confess to being some-what peeved that everyone else had known a week before we were told that surgery had been cancelled.

Update 1 - orchidopxy/hernia surgery

2007-01-13T21:36:00.000Z

I promised an update on why I hadn't posted around here for a little while, and what had been happening in our lives since I last posted. It might be easier to post the updates in different posts, so this I guess will be update 1!

Things have been as always - chaotic. I guess part of my reason for not posting has been 'preemie burn-out' as I call it. When we entered the world of prematurity 7 years and 2 months ago, I remember quite clearly asking when all this would be over. What I didn't realise at the time and no-one saw fit to enlighten me was, that it will never be over. The Consequences of Michael's early birth will be with him, and with us for the rest of his and certainly our lives. Every so often the enormity of this hits home, and I get to the stage where I don't feel like I can deal with it. I withdraw and take time out to lick my wounds, re-charge my batteries before I feel like I am ready to take on the world again.

When Michael was 19 weeks old he had his bi-lateral inguinal hernia's repaired, at the time we were told to keep an eye out for his testicles, because there was every possibility that they would not appear by themselves.

When Michael was 2 and they still hadn't appeared I mentioned this to my GP and was told that it was alright, they'd come down by themselves. To be honest over the years they have become the least of our worries. Until this subject was brought up by another preemie parent, it then dawned - like a little light bulb!! That at 6 I still hadn't seen Michael's! After a heated discussion with the GP about why they were not likely to re-appear by themselves, we were referred back to see the Surgeon. Our appointment was in Jan 06, surgery happened the first week of the school holidays. The older Children went to Grandparents for the week, whilst DH and I spent our time at the hospital - lots of fun for them, but not much for Michael, bless him.

We were told to expect surgery to last roughly an hour, not sure if someone was being slightly ambitious, because 4 hours later we were being called to recovery, where the dreaded "word" 'PICU' was mentioned. Michael's testicles were buried in the scar tissue from his hernia repair, it appears the surgeon had to dig them out of the scar tissue and then sew them into place, also re-doing the hernia whist he was in there, so I think it may have turned out to be slightly more complicated than was first thought it would be.

Michael spent the night in hospital and was discharged the following day, he squeaked all the way home in pain, at every lump and bump in the road, and then spent 3 days sitting on the sofa before we finally managed to get him up and walking with support, gradually reducing the amount of support, until he was managing by himself.

He is very proud of his scars, and is quite happy to show them to anyone!

Neo Doctors Blogs

2007-01-13T00:10:00.000Z

Someone sent me the link to these two Blogs, both written by Doctors who work in Neo-natal Units - there have been some interesting discussions going on within the comments, about outcomes for extremely premature infants.

I have to confess to having taken part in some of the discussions going on in there. I have no problem with saving premature babies at all, BUT I am a strong believer in parental involvement, Especially as a parent who discovered things about their child by accident, with my limited knowledge of prematurity, and my ignorance yes I honestly thought that it was just a case of putting him in an incubator and waiting for him to get fat, fit and healthy!!!

I have to be honest and say I also think that most of this information needs to be shared far earlier than when you find yourself hurtling towards the world of prematurity like a speeding train. The more who are aware of what can be a very real outcome of prematurity then maybe just maybe people will come to understand what the reality can be for many of us.

Unfortunately prematurity does not appear to be something we are ever going to be able to prevent, and younger and younger babies gestation wise are being saved. I've posted below the research done here in the UK the EpiCure study which has, been ongoing for the last 10 years, they have tried as far as is possible to keep track with all babies born between 22 & 25 week gestation; in order to see how these little ones develop.

The figures from the Epicure Study show the following levels of disability, within babies born at those gestation's:

Combining learning problems with physical difficulties allows us to calculate the overall disability rates which are shown below. Although disability affects a high proportion of surviving children, it is most important to remember that most of the children in the EPICure study were doing reasonably well at school, keeping up in the classroom and had normal behaviour patterns. This is something that is often not emphasised in discussions.

Percentage of Children with different degrees of disability

Gestation at Birth No Disability
23 weeks or less 24 weeks 25 weeks
12% 14% 24%

Mild Disability - e.g. low normal IQ scores, wears glasses & has a squint, mild hearing loss, minor neurological abnormalities
25% 36% 35%

Moderate Disability - e.g. moderate learning problems, cerebral palsy but walking, hearing aids, some vision deficit
38% 22% 22%

Severe Disability - e.g. severe learning problems, cerebral palsy & not walking, profound deafness, blindness
25% 29% 18%

Chance of Survival without Severe or Moderate (i.e. serious) disability

Chance at birth going onto survive without Serious Disability

22 weeks 23 weeks 24 weeks 25 weeks
1% 3% 9% 20%

Chance after Admission to NICU of going onto survive without serious disability

5% 6% 12% 24%

Note - these figures relate to the EPICure children born on 1995 and how they were at their 6 year follow up. The reason why the chance of surviving without disability goes up for babies once they are admitted to a Neonatal Unit is that this group has already excluded those babies born alive but who, sadly, died very quickly after birth.

It is obvious from the Trent Neonatal Survey information on the previous page that survival has improved – with this the chances of surviving without serious disability have improved a little but as yet we can't really tell you the exact figures as yet.
What happens if we use the Trent survival figures rather than the EPICure survival figures as they show some improvement?
If the disability rates have remained the same as in EPICure then the equivalent figures following admission for neonatal intensive care will be approximately:

Disability free survival

23 weeks - 11%

24 weeks - 20%

25 weeks - 32%

So it's been interesting to read some other parents points of views. Anyway if you want to check them out here they are!

http://neonataldoc.blogspot.com/

http://bulgingbag.blogspot.com/

Wow

2007-01-12T23:44:00.000Z

Things have moved on around here, since the last time I posted, so I've spent this evening playing with the new format for the blog.

New Years resolution is to get back to posting on here regularly as I had been doing.

It's been 8 months since

2007-01-07T22:56:00.000Z

I last posted here, I am amazed that I've not posted in so long, I have no excuses other than those of life getting in the way.

Since I last posted things have moved on a pace, so please bare with my while I put something together to update on all our news!

this made me cry

2006-06-12T09:06:00.000+01:00

THE FACES BEHIND THE NUMBERS.......

Is there a fine line between crisis and epidemic?????…

The most current statistics read. 1 in every 8 babies is born premature.

1 in every 28 babies is born with birth defects.

Approx 4000 of these babies lose their fight for life.

Many times I sit and think about these numbers, the statistics of a crisis that is still far too silent. The numbers are staggering. The facts are truly heartbreaking.

And the reality….

Means ….

Somewhere right now…..A couple is celebrating the news they are expecting a Baby, unknowing to them their world is about to change forever.

Somewhere right now…..Bililights are being turned on.

Somewhere right now…..A Mother is on total bed rest.

Somewhere right now…..Blood gases is being drawn from a tiny life.

Somewhere right now…..An expectant Mother is sicker than she has ever been before.

Somewhere right now…..Cryotherapy just began.

Somewhere right now…..An expectant Mother is lying in a hospital bed praying for more time.

Somewhere right now…..A baby is being diagnosed with IURG.

Somewhere right now…..Parents sit hypnotized watching a fetal monitor

Somewhere right now…..A Mothers water just broke many weeks too soon.

Somewhere right now…..A Mother is experiencing pre-term labor.

Somewhere right now…..Parents are decorating a nursery for a baby who will never be using it.

Somewhere right now…..A baby is being placed on high frequency ventilation.

Somewhere right now…..A Mother is watching an ultrasound realizing something is terribly wrong.

Somewhere right now….. A Mother’s baby just stopped kicking.

Somewhere right now….. Expectant parents is given no hope.

Somewhere right now…..A Mother is receiving medication in hope of keeping her pregnant.

Somewhere right now…..A toddler still wears a pulse oximeter.

Somewhere right now…..A Mother is lying in a hospital bed crying in fear of what is soon to come.

Somewhere right now…..A baby is receiving Surfactant Therapy.

Somewhere right now…..A mother is being forced to birth a still born baby.

Somewhere right now…..ADoctor is performing an emergency C-Section.

Somewhere right now…..A Mother is having an amniocentesis.

Somewhere right now…..An umbilical catheter is being inserted.

Somewhere right now…..A Mother is diagnosed with preeclampsia.

Somewhere right now…..A baby is being taken from it’s protective world, and placed in a very clinical environment.

Somewhere right now…..A Mother is standing next to a plastic box looking down helplessly at her baby, making deals with God.

Somewhere right now …..A baby is being baptized in a NICU.

Somewhere right now…..A neonatologist is painting a grim picture.

Somewhere right now…..A Parent never imagined they could feel this kind of heartache

Somewhere right now…..A parent lives in fear, of all they do not understand.

Somewhere right now…..A baby has just exceeded its parents insurance limitations.

Somewhere right now…..Regardless of the diagnosis a Parent refuses to give up hope.

Somewhere right now…..A Baby is receiving Nitric Oxide.

Somewhere right now…..A Baby is having a G-Tube inserted.

Somewhere right now…..A Baby is being given a diuretic.

Somewhere right now…..A Baby just crashed.

Somewhere right now…..An apnea monitor just alarmed.

Somewhere right now…..A Mother is frantically dialing 911 because her baby just stopped breathing.

Somewhere right now…..A Baby is being placed on echmo.

Somewhere right now…..A baby’s life hangs in the balance.

Somewhere right now….Parents are rooming in with their baby.

Somewhere right now…..Parents dreams of taking their Baby home is being shattered.

Somewhere right now…..A Mommy is longing to touch her baby, that is too fragile to tolerate her touch.

Somewhere right now…..A baby is being placed on a vent.

Somewhere right now…..Parents are looking for someone to blame.

Somewhere right now….A parent is signing consent to let their baby go.

Somewhere right now…..A mother is replacing bandages around her baby’s newest procedure.

Somewhere right now…..A Baby is being buried.

Somewhere right now….The pain, uncertainty, and fear has become more than a couple can bear.

Somewhere right now…..A Baby is graduating to a C-Pap.

Somewhere right now…..A Mommy is singing to her baby in a whisper.

Somewhere right now….A parent is being awakened by an apnea monitor.

Somewhere right now….Medical staff are trying to stabilize a baby.

Somewhere right now….A Mother is longing so much to hold her baby, it hurts.

Somewhere right now…..A parent is speaking to a medical supply company.

Somewhere right now…..A Baby is being bagged.

Somewhere right now….Parents are being medically trained to take their baby with special needs home.

Somewhere right now…..A baby is getting their heel stuck again today.

Somewhere right now…..A Mother is experiencing Kangaroo Care for the first time.

Somewhere right now…..A baby is experiencing tachycardia.

Somewhere right now…..A baby is getting their first bath in a plastic spit tub.

Somewhere right now…..A Babys nursery light remains off.

Somewhere right now….A nurse is inserting an IV in a baby’s tiny head.

Somewhere right tnow…..A central line is being inserted.

Somewhere right now…..A candle is being lit for a baby.

Somewhere right now…..A Mother is giving her child a breathing treatment.

Somewhere right now…..A family is having a picnic at a grave site.

Somewhere right now…..A home is being remodeled to accommodate a special needs child.

Somewhere right now…..Parents are walking out of a NICU for the last time with empty arms.

Somewhere right now…..A Parent is wondering what if???

Somewhere right now….A Mother is placing a teddy bear on a tiny grave.

Somewhere right now…..A Mother is awakening in tears from a nightmare.

Somewhere right now…..A child is being given Botox injections, in hopes of easing the effects of Cerebral Palsy

Somewhere right now…..An infection is developing around a central line.

Somewhere right now…..A respiratory therapist is adjusting pressure on a vent.

Somewhere right now…..A baby is going home after months in the NICU.

Somewhere right now…..A Baby’s feeds have just been stopped.

Somewhere right now…..A neonatoligist is sitting silently in prayer.

Somewhere right now….A Mother is feeling guilty.

Somewhere right now…..A Baby is experiencing Bradycardia.

Somewhere right now…..A Mother is walking into a NICU for the very first time.

Somewhere right now…..A small child is being fitted for leg braces.

Somewhere right now…..A Baby is enduring the examination for ROP.

Somewhere right now…..A Father is balancing a role of primary care giver to siblings at home, and work to allow Mom more time with her baby.

Somewhere right now…..A Mother is pumping breast milk to put down a feeding tube.

Somewhere right now…..Parents are searching for a pre-school that will accommodate their special needs child.

Somewhere right now….Siblings are being sent to stay with Grandparents for reasons they do not understand.

Somewhere right now…..Parents are trying to explain to a small child their sibling will never be coming home.

Somewhere right now…..A home is being remodeled to accommodate a wheel chair

Somewhere right now…..A family is living in hibernation to protect their Baby from the health dangers of the outside world.

Somewhere right now…..A Baby is being intubated.

Somewhere right now…..A parent is searching for some kind of normalcy.

Somewhere right now…..A parent is hearing their baby will be severely visually impaired.

Somewhere right now……A surgeon is operating on a heart the size of a strawberry.

Somewhere right now….Part of a baby’s intestines are being removed.

Somewhere right now….A parent is replacing monitor leads.

Somewhere right now….A child is playing as far as it’s oxygen tubing will allow.

Somewhere right now…..A parent is picking out a tiny casket.

Somewhere right now…..A shunt in being inserted into a tiny baby.

Somewhere right now…..Faces are being missed from a family gathering because of the health risk it poses to a Baby.

Somewhere right now…..A baby is aspirating.

Somewhere right now…..A Mother is deciding which one of her babies in the NICU needs her more.

Somewhere right now…..A Mother is too frightened to go home

Somewhere right now….. A NICU nurse is consoling a Mother.

Somewhere right now…..A Baby’s kidneys are failing.

Somewhere right now…..A child is being made fun of because they are different.

Somewhere right now…..A Mothers heart is breaking for them.

Somewhere right now…..A Baby is having a feeding study.

Somewhere right now….A mother is watching anxiously as her near 2 year old child takes its first steps.

Somewhere right now….A Mother is untangling her child from it’s oxygen tubing.

Somewhere right now….A child has just pulled out its g-tube.

Somewhere right now…..A parent sits anxiously awaiting test results.

Somewhere right now…..A baby is being extubated.

Somewhere right now….A Baby is having an echo cardiogram.

Somewhere right now…..A Surgeon is performing a lifesaving procedure.

Somewhere right now…..A Child is being fitted for hearing aids.

Somewhere right now….A Child is having a sweat test.

Somewhere right now….A baby is receiving a blood transfusion.

Somewhere right now…..A Mother is kissing her baby for the very last time.

Somewhere right now….A parent is inserting a feeding tube.

Somewhere right now…..A parent is feeling like they can’t go on.

Somewhere right now…..A Nurse is drawing blood from a tiny little vein.

Somewhere right now……. Grandparents watch helplessly.

Somewhere right now…..A parent is picking out frames for the new glasses their small child will be wearing.

Somewhere right now…..A child can only sit and watch children play.

Somewhere right now…..A Baby is being released to come with feeding tubes, oxygen, and monitors.

Somewhere right now…..A Mother is putting hearing aids on her Child.

Somewhere right now…..Parents are sitting with a Social Worker.

Somewhere right now…..Parents are holding a Memorial instead of a birthday party.

Somewhere right now ….. So many babies are enduring so much more, with some procedures surpassing the imaginable…..

Far too many.....................

Taking an overall average, the average person reads approx 200 words per minute. In the length of time it took you to read this.

7 Babies have been born premature

2 Babies have been born with a birth defect and

1 Baby is preparing to receive its wings.

Getting my head around things

2006-04-26T20:50:00.000+01:00

What can I say?? We went to see the Resp on Monday 24th, and got the results of the recent 24 hour study! Not sure they got the full 24 hours because Michael was in a mood the day it was done! But there was enough....

We're back in 02 at night, when Michael's Heart Rate drops so do his SAT's. In order to keep his SAT's rate up, his heart rate is high, the resp said he would discuss this with the Cardiologist. He asked if Michael's heart-rate ever dropped into the 80's, and the only time it appears to do this is at night in his sleep, taking his SAT's with him.

So the 02 is our friend again for the foreseeable future, although it kind of feels like we've taken a step backwards, it's not one I am totally surprised about, given the difference in him when he was back in it a couple of weeks ago, but I have to confess it's not one I ever expected to take.

Imagination

2006-04-20T20:49:00.000+01:00

There is something to be said for developing an imagination while playing, any ideas??

Internet Trolls

2006-04-16T20:58:00.000+01:00

There seems to be something in the air at the moment, one of the forum's I belong to recently had a woman claiming to be the mother of twins...she had built a website for them, pictures were posted, and hey presto, here's who this child really belongs too.....the devastation that the child's real mum, must have felt to see a picture of her child, with the words, died this afternoon, written underneath them.

When it was revealed that this was a hoax, there was a sense of shock, disbelief, and anger floating around, from the members there who had believed this womans story, who had offered support and who despite their own experiences had been able to offer support to someone they believed needed it, in the same way as we did when our babes were tiny. The people who know what it's like to really experience this, who still carry the scars of their experience are now left wondering and questioning everyone else around them, and how genuine these people are.

I've read and re-read the article two posts down about the Sarah Everson and her partner, who faked the birth of 6 babies, and one quote leapt out at me.

"I’m so afraid they’re not going to make it," she sobbed. "Nobody understands how hard this is. I know that they’re here. I know what I had to go through to get them here."

There are genuine preemie parents who do know how hard it all is, who know what their babies went through to survive, who sat and watched their little ones undergo numerous painful and distressing procedures in their fight for life, there are preemie parents out there who sat by helplessly and watched, as their little ones lost that fight.

We have enough in our lives, and on our plates, without the sad people in this world, like Sarah Everson who seem to think it's ok to make up a whole new alternate life for themselves, and take advantage of what in reality is a situation beyond comprehension.

Reached by phone late Tuesday, Sarah Everson offered no explanation. "I’m not talking to anybody right now," she said, "because nobody gets it."

No Sarah, I don't get it, I really don't understand why you felt it was ok to do something like this. I'm sure I'm not the only preemie parent who will struggle to understand why you thought this was ok......perhaps these people need to walk a day in our shoes.

X-Factor

2006-04-16T20:49:00.000+01:00

I don't watch these reality tv programmes, so I had no idea who Shayne Ward is ~ but I really like the current single ~ no promises.

So I'm tempted to go buy the album tomorrow when it's released!

I am speechless

2006-04-14T22:28:00.000+01:00

Herald

Couple’s 6 babies were only a hoax

By Matt Sednesky
Associated Press

GRAIN VALLEY, Mo. - The library books on multiple births crowded the couple’s coffee table. The bedroom-turned-nursery awaited the arrival of six newborns.
But in the end, authorities say Sarah and Kris Everson never had the sextuplets as claimed. All they had was what appears to be a big lie.

The couple’s dramatic story had holes in it from the start - from their mysterious withholding of information for more than a month to the unanimous response of area hospitals that they hadn’t helped deliver the newborns.

On Tuesday, authorities said the mystery had been solved - the entire tale was deemed a hoax aimed at tapping the generosity of others to pay the couple’s mounting bills.

"I have never dealt with anything like this," Police Chief Aaron Ambrose said. "The level of fraud like this involving people, I have not."

Gary Bradley, the city administrator, said charges against the Eversons were forthcoming. Prosecutors had not yet determined how much the couple profited from the scam or whether they would qualify for charges beyond the municipal level.

The Eversons - Sarah, 45, and Kris, 33 - claimed to have given birth to four boys and two girls on March 8. The babies were apparently in intensive care.

The tale exploded in the local spotlight Monday when The Examiner in Independence ran on its front page a photograph of the couple holding six one-piece baby outfits and announcing the births.

Hours before admitting it was a scam, Sarah Everson showed an Associated Press reporter pictures of her in maternity clothes, her baring a huge pregnant-looking midsection, even sonogram images she claimed were of her infants. She showed off a tiny nursery, a closet full of baby clothes and the tiny diapers premature newborns must wear.

She said the entire story of her children’s births was being kept secret by a court order enacted because a member of her husband’s family was trying to kill the Eversons and their new sextuplets.

"I’m so afraid they’re not going to make it," she sobbed. "Nobody understands how hard this is. I know that they’re here. I know what I had to go through to get them here."

Sarah Everson said a detective begin questioning her Tuesday evening; Bradley and Ambrose said the Eversons were interviewed at the police station for about an hour, during which they revealed the story was a scam. They were released pending charges.

After the Examiner’s initial story, the AP did not publish a story or transmit photos about the sextuplets over concerns of accuracy.

Reached by phone late Tuesday, Sarah Everson offered no explanation. "I’m not talking to anybody right now," she said, "because nobody gets it."

The Web site soliciting gifts was taken down Tuesday night.

Examiner Editor Dale Brendel said he was considering a front-page column to readers addressing the issue. He said the incident would force a review of his reporters’ verification practices.

"I think that we fell victim to the hoax. There were people out in the community who were doing fund-raisers already, and we feel bad for them and for us that we were the victims of that," Brendel said. "In retrospect, there were things we could have done better from a newspaper standpoint, in terms of our investigations and trying to flesh out some of the red flags there were about the story."

A&E again

2006-04-13T21:22:00.000+01:00

So todays little bit of excitement, to liven up a fairly boring day was a trip to A&E. To have this removed from the right nasal passage. We haven't been to A&E for a while to have things removed from body orifices. I guess Michael kinda figured it was time for another visit.

Not sure you wanna hear the wise cracks flying round the office DH works in!!

Spring

2006-04-10T20:34:00.000+01:00

The sun has come out, spring has sprung, and Michael wants the paddling pool out

Parent of a Premature Child

2006-04-08T21:22:00.000+01:00

If you're the parent of a Premature Child and your reading this. Then please drop by, say hello, and come and meet other preemie-child parents.

Fun day

2006-04-08T21:12:00.000+01:00

Today we made Gingerbread

Party Day

2006-04-02T21:20:00.000+01:00

Oh how I wish I'd had a camera on me today!! We went to a friends 4th Birthday today. His mum had hired a children's entertainer for the afternoon.

He was wonderful, he was really, really good, didn't take him long to learn Michael's name!! But he had Michael up helping him doing some magic.

The real magic............ the look on Michael's face! It was priceless!

enough said

2006-03-31T21:46:00.000+01:00

Resp Appt

2006-03-27T20:24:00.000+01:00

We had two appointments today, the first one was with an Opthamologist who is doing some research into the outcomes for premature babies with ROP I am really pleased and proud to be able to say that Michael did really well with the assessment, and the Opthamologist assessing him was really pleased with how well Michael did.

Next was our appointment with the Resp, unfortunately since our appointment two months ago, things don't appear to have moved on much, there still has been no word or assessment done by Speech and Language, despite a referral 6 months ago. Unfortunately due to sickness, holidays and other commitments there has been no Radiology Meetings, so we still don't know if we are to get a repeat CT done. The videos I did of Michael sleeping have not as yet been looked at.

I did ask about the chest deformity, and was asked if anyone else within the family has a chest of that shape, when we answered no, we were advised that it is due to the level of damage within Michael's lungs. The scars on the lungs have pulled Michael's chest into this shape, I guess just one more outward sign of the turmoil within his lungs.

We did however come away with an appointment for a months time, and a pulsox monitor to wear for 24 hours. This will monitor Michael's saturation levels for 24 hours, and give them some idea of how Michael SAT's.

When Michael was younger we were always told his 02 (oxygen) saturation levels had to be above 95% and even now 6 years later, that level still sticks in my mind as being the level needed. So can you imagine the heart sink to realise that if we hit 95% we were doing well?!?! Michael sat mainly between 89% and 94%

I remember a couple of years ago taking Michael to see another Consultant who had his SAT's monitored, he was quite happy with Michael sat'ing at 89% because as he put it "he probably doesn't sat much higher than that anyway." I remember feeling quite indignant because Michael could sat at 97% with no problems, I remember thinking at the time, 'that is so wrong, how can you accept 89%?? why aren't you concerned?'

Now here I sit and it appears that 89 - 94 is 'normal' for my son, and I guess I'm the only one who is surprised by this.

I also know this is part of my ongoing battle; to let go of the expectations of the past.... I have to confess that his 02 needs are something that I have trouble letting go of, they are such a big part of his life and have been for so long, that magic figure of 95% still looms large!!

The Sunday Times

2006-03-26T20:18:00.000+01:00

The Sunday Times

March 26, 2006

Doctors call premature babies ‘bed blockers’

Sarah-Kate Templeton, Medical Correspondent.

PREMATURE babies who require months of expensive intensive care in neonatal units have been labelled “bed blockers” by one of Britain’s royal colleges of medicine.
The Royal College of Obstetricians and Gynaecologists (RCOG) says the huge efforts to save babies born under 25 weeks are hampering the treatment of other infants with a better chance of survival and a healthy life.

As the NHS faces an increasing financial crisis, with beds being closed and jobs axed, it says these very premature babies are “blocking” much-needed intensive care cots, sometimes forcing expectant mothers with potentially healthier babies to be transported by ambulance to other hospitals.

In a submission to a two-year inquiry into premature babies by the Nuffield Council on Bioethics, the college says: “Some weight should be given to the economic considerations as there is a real issue in neonatal units of ‘bed blocking’, whereby women have to be transferred in labour to other units, compromising both their and their babies’ care.”

The statement reflects a growing view among child specialists that babies born under 25 weeks should be denied intensive care and allowed to die.Next month the Royal College of Paediatrics and Child Health will debate a motion at its annual conference that it is “unethical” to provide intensive care routinely to babies born under 25 weeks. In practice, they would only be saved in exceptional circumstances.

It would shift Britain towards practice in Holland, the only European country that accepts such babies should die. One paediatrician opposing such a change described it as “involuntary euthanasia”. However, Susan Bewley, chairwoman of the ethics committee of the RCOG, said: “I would prefer that every baby could be treated, but we cannot get away from the fact resources are not endless.”

About 800 babies are born each year under 25 weeks. Medical advances mean about 39% of those born at 24 weeks now survive, and 17% of those at 23 weeks. A normal-term baby is born at 40 weeks.

The cost of treating very premature babies is high. A neonatal intensive care bed costs about £1,000 a day and very premature babies can require intensive care for four months.

Research to be presented at the Royal College of Paediatrics conference shows babies born at 25 weeks or under cost almost three times as much to educate by the time they reach the age of six as those born at full term — £9,500 a year compared with £3,900.

Professor Sir Alan Craft, president of the Royal College of Paediatrics, said: “Many paediatricians would be in favour of adopting the Dutch model of no active intervention for these very little babies. The vast majority of children born at this gestation who do survive have significant disabilities. There is a lifetime cost and that needs to be taken into the equation when society tries to decide whether it wants to intervene.”

Any change to a Dutch model would be opposed by parents such as those of Joey McCormick, born three weeks ago at 24 weeks’ gestation. Doctors say he has a 90% chance of living. His father Daniel McCormick, a chef from Norwich, said: “The doctors behind the proposals must regard Joey as a number and an expense, but to us he is our little boy.”
Joey’s doctor, Paul Clarke, a neonatologist, said: “To me it all sounds too much like attempts to bring in involuntary euthanasia at the opposite end of life.”

David Thomas, from Oxford, was born at 24 weeks, spent 4 months in hospital but now at two is healthy. His mother Michelle, a psychiatric nurse, said: “Not to have given David the right to life would have been unethical

Art work

2006-03-24T09:16:00.000Z

I am really proud of Michael's artwork,

I think we may need to work on what you can, and can't draw on!

Tubes and things

2006-03-22T14:32:00.000Z

I was sat at the table last night with DH, talking about Michael and his lung issues, the times we've spent in hospital and all the things that have happened over the last 6 years. How sick our son has been during that time, and the upheaval that has gone along with it.

We are so looking forward to the day when all this ends, when there is no more sickness, and the oxygen concentrator is returned. We were saying last night how we don't ever want to go back to the days that have gone before.

But it started me thinking, about how things have been, and the things we've not been able to do. Simple things that lots of families take for granted, such as being able to celebrate Christmas altogether as a family, or even being able to plan things for Christmas, like going to relatives, and winter birthdays, we have missed many of the things that families are supposed to be able to do together.

There are certain places that we know it is just impossible to take Michael too, such as museums, and aquariums. I tried, and it wasn't pretty!! Michael loved the aquarium, but he scared the fish silly! And yes we got told off, and told to control him, and stop him from banging on the fish tanks. So he ended up strapped in a pushchair, which then left him fighting and screaming round the aquarium.

Holidays abroad are just a complete no.....the thoughts of spending x number of hours on a plane with Michael, scares me silly. I don't think it would just be him that needed sedating!! It's not just that, but the extra cost of taking Michael, in insurance, and needing 02 etc puts holidays abroad way out of our budget.

We have however discovered that we can do theme parks, because Michael is registered disabled we can get passes to save us having to queue! But we learnt that lesson the hard way, after spending 5 hours wandering around because the queues were just too big for Michael, so we got more done after 5pm when everyone else went home.

On the way out the park we discovered a scheme for disabled persons, which most theme parks have, and would have saved us a lot of tears and a lot of trauma.............but left me with guilt.

Michael's disabilities are hidden disabilities, there is no obvious sign of a disability, so getting to the front of the queue means walking past all these people who have been waiting patiently for their turn, so do we go to the front or do we wait our turn with a flailing, screaming, wailing child??

Appointments

2006-03-22T14:03:00.000Z

We now have appointments for the children's hospital for July 2006, so 4 months time. Between now and then I have half a rainforest of paperwork to complete, if I don't lose it first!!

The first appointment is with a Paediatric ENT and that is at the beginning of July, the second appointment is for the Dysphagia Clinic and is 3 weeks later. So we'll have two trips into London on the train, fortunatly they are both early afternoon appointments, but I'm thinking we'll still have one rush hour to deal with, as Michael doesn't do crowded commuter trains very well!

Last time we took him into London on the train, was for his Videofluroscopy, when we discovered that Michael has his swallow issues, and we bought nibbles from the concourse to eat on the train on the way home, and just as the train was pulling out of the station, Michael's gag reflex kicked in, got us some strange looks from the others on the train!!

But I'm looking forward to going and hopefully getting some answers as to what is going on with the snoring, SAT's dropping etc.....if its something and nothing and therefore can be forgotten about, or if it's just one more complication to add to the list!

OT/PT

2006-03-21T14:22:00.000Z

Michael recently had an OT/PT assesment in school to see how things are coming along with his hypermobility.....the good news is that all is well with his fine motor skills. But his gross motor skills still need some working on!

Welcome Back Shelley

2006-03-18T20:40:00.000Z

Shelley has started another Blog and it's great to see her back and blogging again.

Go take a look

http://one-way-ticket-to-prematurity-ville.blogspot.com/

Wow, update

2006-03-12T20:27:00.000Z

It's been a while since I updated what was happening around here, and I think if you've read my last post you may have gathered, I've been doing some sole-searching as to do I carry on or do I just give up and not post anymore. If I don't post there's no information to take and use elsewhere.....but in not posting I am also losing the ability to share the reality of having a premature baby, with long term issues, and that is far more important to me, than some sad person who needs drama. So I have decided that I will continue to post, so sorry folks your stuck with me for a while longer!! And to Kristin and Jenny, thank you.

So, what can I tell you?? Michael has been seen by the SALT, regarding his stammer/stutter or to give it it's correct title, Dysfluency!! So there you go another label to hang around Michael's neck!! The SALT who specialises in Dysfluency, is working with the SALT in school at the moment, and has given her some suggestions and ideas to work on to try to improve the stammer!! She's then due to see him again in about a weeks time, to see how things have improved. I have to admit things do seem to be slightly better, but oh boy when he gets stuck, he really gets stuck!

When I spoke to the SALT at school I asked if she'd received a request for a feeding study, from the Resp, that was sent 6 months ago......guess what??? She hasn't.................

She has now though, because I sent her a copy of the letter!

We still don't as yet have a date for surgery, but we did get a letter to say we are on the waiting list, I guess I should ring to find out how long the waiting list is!!!! (I just haven't got around to doing that yet!!) Because then at least we'll know what the chances are of him getting to the top of the list, in the middle of some of the things DH has planned for this year!

Michael is also going to be taking part in some research into the long term effects of Retinopathy of Prematurity, or ROP as it's known around these parts! ROP is a condition which affects the eye development in premature babies, and means the blood vessels grow in places they wouldn't normally grow in the eyes of term babies. Michael had Grade 3, stage 3 ROP and narrowly avoided needing lazer surgery. Anyhow we have been asked if Michael could be tested as part of this research, so we have agreed, and once he's had this done it will then be appointment with the Resp on the same day! Last resp appointment was awful, so DH is coming with me, hopefully he will be able to keep Michael under control while I talk with the Doctor!

We also received a letter in the post from hospital z, remember my post about going all the way round the houses in order to be seen in the hospital we wanted to go to?? Well the Paed has referred him to hospital Z, which is a children's hospital so therefore has Paediatric ENT's. So I received a copy of the referral to the ENT dept, but as yet haven't heard anything from them.

We also received a form to fill in, for the Dysphagia Clinic, at the same Children's hospital. So I shall be posting that tomorrow, not sure how long it will take for the appointment to come through.

We're having a bit of a weight issue at the moment, and this is probably going to seem silly, but weight gain has always been a major issue with Michael, he just didn't gain weight....even with a g-peg he still didn't gain weight. Until about a year ago, when he suddenly started to put weight on, which is awesome as far as we're concerned, mind you he was on major calorie intake!!!

So the dietician, concerned that he was putting on too much weight, changed the calorie value of his formula, and since she did that Michael has been losing half a pound a month. At the moment it feels like we are undoing all that hard work to get weight on him. I'm not happy, but I seem to be the only one who's concerned about it!

Oh and to top it all off, with the weight loss seems to have come this!

Research

2006-02-14T22:30:00.000Z

So is it just me??? Why, when I read the following piece of research by Saigal, do I see another "all-better-by-the-age-of-two" appearing?? Only this time the goal posts have moved, and it's now adulthood.

There are too many questions and not enough answers in this research, for example, what do they consider independant living??? How much support is needed, to make that living independant??? If it's with support, is it ever truly independant?? Is living in a care home, consider independant living?? Is attending Day Care classed as continuing education??

Many children with disabilities walk away from school with 'qualifications', but they won't be on the same level as you or I have. Any qualifications they may gain, will not equip them for a job where they demand A & O' levels. There are so many career paths out there that just are not available to people with disabilities, too many predjudices and too many people willing to take advantage of those less fortunate than themselves.

I know deep down that my son will never live independantly, not without a huge amount of support. That may be independant from me, but it isn't truly independant, as most of us would see it.

ELBW babies/adults, what gestations are we talking about here?? How many of these ELBW babies are the micro-preemies that they are able to save today, babies who in reality are far more fragile than a lot of the babies they were saving 20 years ago.

To me there are so many things within this research that may bring false hope to parents of premature infants. Too many questions that need answering before I start jumping up and down.

It's only when questioned deeper that you realise this research is not as positive as it would first seem. For those of us with preemies with disabilities as a result of their premature birth, they are not going to awake on the morning of their 21st birthday and find they have "recovered" just as we didn't on their second.

URGH!!!!!!!!!!!

Saigals Research

2006-02-14T22:00:00.000Z

Context
Traditionally, educational attainment, getting a job, living independently,
getting married, and parenthood have been considered as markers of successful transition
to adulthood.

Objective
To describe and compare the achievement and the age at attainment of
the above markers between extremely low-birth-weight (ELBW) and normal birthweight
(NBW) young adults.

Design, Setting, and Participants
A prospective, longitudinal, population-based study in central-west Ontario, Canada, of 166 ELBW participants who weighed 501 to 1000 g at birth (1977-1982) and 145 sociodemographically comparable NBW participants assessed at young adulthood (22-25 years).

Interviewers masked to participant status administered validated questionnaires via face-to-face interviews between January 1, 2002, and April 30, 2004.

Main Outcome
Measures Markers of successful transition to adulthood, including
educational attainment, student and/or worker role, independent living, getting married, and parenthood.

Results
At young adulthood, 149 (90%) of 166 ELBW participants and 133 (92%)
of 145 NBW participants completed the assessments at mean (SD) age of 23.3 (1.2)
years and 23.6 (1.1) years, respectively.

We included participants with neurosensory impairments (ELBW vs NBW: 40 [27%] vs 3 [2%]) and 7 proxy respondents. The proportion who graduated from high school was similar (82% vs 87%, P=.21). Overall, no statistically significant differences were observed in the education achieved to date.

A substantial proportion of both groups were still pursuing postsecondary education
(47 [32%] vs 44 [33%]).
No significant differences were observed in employment/school status; 71 (48%) ELBW vs 76 (57%) NBW young adults were permanently employed
(P=.09).

In a subanalysis, a higher proportion of ELBW young adults were neither
employed nor in school (39 [26%] vs 20 [15%], P=.02 by Holm’s correction); these differences did not persist when participants with disabilities were excluded.

No significant differences were found in the proportion living independently (63 [42%]
vs 70 [53%], P=.19), married/cohabitating (34 [23%] vs 33 [25%], P=.69), or who
were parents (16 [11%] vs 19 [14%], P=.36).

The age at attainment of the above markers was similar for both cohorts.

Conclusion
Our study results indicate that a significant majority of former ELBW infants have overcome their earlier difficulties to become functional young adults.

JAMA. 2006;295:667-675 www.jama.com

I have been sick

2006-02-12T06:46:00.000Z

I've not posted for a few days because I have spent most of them sleeping! There seems to be some kind of virus going around that I really thought we had managed to escape, that the flu vaccines had protected us from it.

Boy was I wrong.........I have slept pretty much solidly since Friday, I am awake now, but my entire body hurts.

So it is now half term, the children have a week off from school, be interesting to see if they come down with it during the holidays or as they are all due to go back to school.

We are supposed to be going to Grandma-with-the-white-hair's house tomorrow!! Let's hope we're all well enought to go, cos I know one little boy who is going to be very unhappy if we can't go!

medical bits

2006-02-09T18:56:00.000Z

I spoke to Michael's Paed today it appears that she isn't able to refer to the hospital we would like to take him too either. In order for us to get a referral there, we have to go to the ENT at our local hospital, who then have to request a tertiary(?) referral, to that hospital, because it's something that they can't deal with. Which given his swallow issues there is every possibility that it could be more than just adenoids, and his Paed wants everything ruling out first, which our local ENT won't be able to do............are you with me on this??

Basically this means waiting x number of months for an appointment with ENT here,
to then be told we can't do this, we will refer to Y,
so then we wait x number of months for an appointment there,
When we could have all been saved a load of hassle, by being referred to Y in the first place.

Can someone please tell me where the best interests of the patient comes into this game??

Please don't ask

2006-02-06T01:04:00.000Z

what I'm doing here at 1am.

I've been to bed, and as soon as I laid down my head filled with all these things I suddenly needed to think about, like Mic-Key buttons that may or may not be too small.

I'm sitting here with Hot Chocolate, thinking I need to go back to bed, I know I have to get up soon, because children need to go to school!!! But as soon as I lay down my head fills with all this useless information and my brain is running!

Stuttering

2006-02-05T20:49:00.000Z

I'm not sure if I've mentioned this before on here, I think I may have done.....

Michael developed a stutter/stammer which was around for a little while and then seemed to vanish almost as quickly as it appeared. We were put in touch with the "stutter" Speech and Language Therapist, who sent us some information on stuttering, and I have to admit we never went to see her, because the problem seemed to have cleared itself up.

Well, the Stutter is back, and back with a vengence. I have to say it's actually been quite painful listening to Michael trying to make himself understood. So tomorrow I will be ringing the SALT to see if we can meet to discuss this.

If your interested in seeing what I mean, then click here

Night Time

2006-02-02T21:58:00.000Z

We managed to get hold of the SAT's monitor from the hospital in order to do some overnight readings on Michael. My main concern was what if any affect the snoring is having on his sleep.

I have to confess to being really confused now, the first night we did, when I put Michael onto the SAT's monitor he was sitting at 89% and the desire to put him into 02 there and then was immense, but I restrained myself thinking we needed a clear picture of just what was going on.

He did not have a good night, when I printed it off Tuesday morning his average was 90% with 20% of the night sat's in the 70's and 80's.

So we tried again Tuesday night, I sat watching him for a while, just to see what was happening with his numbers...he was sitting quite happily at 95% which was wonderful, and then he started dropping his numbers, finally settling on 82% before he picked himself back up to 95% He did this half a dozen times before picking himself up and sitting at 95%.

When I printed it off Wednesday he had an average of 95%, with a small percentage down into the 80's.

So we did it again last night, just to see, again when he went on the machine, he wasn't snoring and his sat's were sitting at 95% and this morning that was his average, with a small percentage of drops into the 80's.

So, now I am totally confused, was Monday just a bad night???? But what about the dips in his SAT's into the 80's on Tuesday and Wednesday night.....is this normal?? Do we all do this normally as part of our sleep pattern??

But going on Tuesday and Wednesday nights readings maybe his snoring isn't affecting his sleep that much, but then why does he look so tired right now, and why am I having to peel him from between his sheets in the mornings??

Confused.......?? Me too???

ROP

2006-02-01T22:27:00.000Z

ROP or Retinopathy of Prematurity is a condition that premature babies develop in NICU's around the world.

What is retinopathy of prematurity?

Retinopathy of prematurity (ROP) is a potentially blinding eye disorder that primarily affects premature infants weighing about 2¾ pounds (1250 grams) or less that are born before 31 weeks of gestation (A full-term pregnancy has a gestation of 38–42 weeks). The smaller a baby is at birth, the more likely that baby is to develop ROP. This disorder—which usually develops in both eyes—is one of the most common causes of visual loss in childhood and can lead to lifelong vision impairment and blindness.

Michael had Grade 111, ROP, and narrowly avoided lazer treatment for it, however this morning a letter dropped through the door asking if we would take part in some research on the affects of ROP in Premature infants.

As you can imagine we have said yes!

Today

2006-01-31T20:54:00.000Z

my chicken-pox are:

Green!

Exhausted

2006-01-29T23:51:00.000Z

I just feel so physically and emotionally exhausted today, it has been a long week, and one of those weeks that I am so pleased to see the back of.

I have a feeling that it is going to be a very long couple of months, we now have to sit and wait for Michael's appointment for surgery, an appointment for a CT, and then we have to wait whilst the NHS argues over where we go for our ENT appointment.

Why can't it ever be as simple as - this child needs this doing so we'll do it. Why does it always come down to money?? Why yes my head is firmly planted in cloud-cuckoo-land!

The problem that we have is, our local hospital I have zero faith in, and I try to avoid it at all costs, no-one there is prepared to take responsibility for Michael, because he has a Resp, so when I try to discuss things with his Paed there, we get talk to his resp.

His Resp works in a different Health Authority, his hands are tied, because we don't live in that area. Its not that he's being difficult, it's just that he can't do it, the hospital and red tape will not allow it.

I may be looking at this from a very simple point of view, but to me, if the Paed is saying I think you should be doing this, because its best if it all happens in the same place, then the Health Authority that we live in should be paying for x & y, wherever is the best place for x & y to happen.

Who is it that suffers in all this???

Snoring and other things

2006-01-29T23:40:00.000Z

If you take a wander over to Michael's website, I've put a video on there or two of mr man asleep!!

Nice noise huh???

I've also reintroduced his guestbook, so please feel free to stop by and say hello......

Saturday Club

2006-01-28T23:39:00.000Z

Again today, and you'll be pleased to know they all had a ball!!!

Michael's Site

2006-01-27T22:51:00.000Z

I've been working on Michael's website today, updated it, done a bit of adding to, taking away, and generally moving around.

Go look would like to know what you think to the new(ish) site!!

www.michaelrigaud.co.uk

Chicken Pox

2006-01-25T22:45:00.000Z

I forgot to mention this, but how's this for imagination??

A face full of red pen marks - " I'm poorly I have chicken pox"

The felt tip wouldn't come off so we had to send him into school complete with "spots"

Surgeon

2006-01-25T22:25:00.000Z

We had a trip back to the same hospital we were at on Monday today! I wasn't looking forward to it, the thought of a repeat of Monday, was more than I could cope with, so DH came today too......

The last couple of nights I've had to video Michael sleeping, and making all kinds of weird and wonderful noises, to hand over to his Resp today. So this morning was spent desperatly trying to remove what I'd filmed from off the Camcorder and onto a CD to take with me...didn't work, so we had to do it the old fashioned way of recording it from the TV.

There were a couple of occasions last night whilst I was filming him, where I actually wondered if he'd stopped breathing, I could feel my heart racing, thinking do I poke him? Or do I leave him? Am I seeing things?? Am I having a flash-back to NICU days when he used to regularly stop breathing and we had to flick his feet to get him started off again! Am I losing my marbles?? (Don't answer that one!!)

Michael hasn't coped very well with seeing himself sleeping, and I'm not sure if it's not the noise he makes whilst he's sleeping that's worried him, but we had to turn it off whilst he was around.

So anyway, this afternoon we trotted off to see the Paediatric Surgeon, who examined Michael and said, "hmm not a lot there is there?

Anyway he needs a double Orchidopexy, because of Michael's lung issues we have to be admitted into the ward, and because he needs double surgery it may mean that they aren't able to do both at the same time, depends on how complicated it is, there seems to be some thought that one may be caught up in the scar tissue from his hernia operation.

In other news Michael himself was a dream! No repeat of Monday at all! Might just have to take DH with me next time!!

Why, Why, Why

2006-01-24T22:14:00.000Z

I went to a meeting at school last night to discuss the new homework packs that will be coming home on a weekly basis from school. They look like fun, all based around Nursery Rhymes and teaching children communication and writing skills without ever having to pick up a pencil!

But I was talking to Michael's teacher and some of the other Mum's and we got onto the subject of Why? questions.

Michael has been asking lots of why questions just recently, he wants to know the why's of everything.

But I have to say the following conversation he had with his teacher made me laugh.

The conversation followed a session they were doing on Humpty Dumpty, the egg that sat on the wall.

Michael said to his teacher, "Why did Humpty break?"

To which his teacher replied "Because he's an egg Michael"

Michael then returns with "Why is Humpty an egg??"

ERRRRR!! Because he is - doesn't cut it with Michael!!

Resp Appointment

2006-01-23T21:36:00.000Z

I am still wound like a coiled spring waiting to go off, still haven't quite calmed down completly, but am better now than I was earlier. The visit to the Resp turned into a stressful nightmare. From here on in it will have to be two of us that do the medical appointments together, because I cannot face another session like we've had today, it's dangerous.

Collected Michael from school and we toddle off to clinic listening to Stephanie & co pelting out his favourite tunes....get to clinic fine no problems, get weighed 23.8kg..............so when he was weighed in school by the Nurse he was 24kg, when he was weighed by the Doc in clinic he was 24kg, so at best we've put no weight on in 5 months.

Long, long story short, we started off with a peak flow measurement, which Michael just wasn't able to do, doesn't have the lung capacity. No great surprise there to either me or his resp!

As for the sleep study, they want to do one at home, which includes video him having one of his breathing episodes, and take it in with me when we go back on Wednesday. He is going to arrange for Michael to get a pulse ox type machine to wear for 24 hours, so he can see what his 02, pulse levels etc are like over a 24 hour period, we have to include a period of exercise in amongst this too. The probe sits on his finger and the machine straps round his wrist like a watch - dinky little things they are!! But will mean it having to be splinted to his arm. Aren't we just going to love that!!

He cannot arrange another video fluroscopy, but is going to discuss with the SALT at school a feeding assessment done in school.

When I was asked what the referral to the surgeon was about, I told them about the missing boy bits issue, and was told that this should have been done before his first birthday and at latest by the time he was 2. Anyway the registra decided he would see if he could find Michael's "bits", I'm not kidding he poked that hard, he made Michael squeak, but he found the flaming things. He then tells me this is fine, because they're there!!

I know they are there, I'm concerned because they never come down by themselves...so we will be going back on Wednesday to see the surgeon about his testicles.

All in all, it was a pretty decent run to the hospital, but this is where the red mist descends....

Michael has put on a pretty good showing of why he got his Autism dx this afternoon.

We got out seeing the Dr and went to book another appointment, and Michael opened the double doors out of clinic and shot off down the hall...I went and got him brought him back, and he was throwing himself around, flailing his arms and legs screaming and wailing.

I eventually managed to get him back to the car, and then get him in the car, and he screamed, wailed, shouted, ranted, raved and generally behaved like well an Autistic child...he was throwing things around the inside of the car, he emptied my handbag all over, he was kicking the doors and the dashboard of the car............... and then his party piece, he opened the window and started trying to open the car door, telling me he wants "out the car".

So I stopped, put him in the back of the car, with the child lock's on, and drove the rest of the way home with him wailing, crying, kicking, screaming, throwing things, I'm trying desperatly to keep one eye on the road, and one eye on him to make sure he wasn't clambering out the window.

What was it all about???? What caused this earth shattering major melt-down????

A chocolate biscuit - he wanted & I didn't have....

So I was just a tiny bit stressed when we got home, and I have it all to look forward to again on Wednesday.

Lucky me

Impersonation time

2006-01-21T21:31:00.000Z

http://media.putfile.com/Stephanie242

Web ring

2006-01-21T12:21:00.000Z

Are you a blogging Preemie Parent???

I've created a web-ring, for preemie parents who share the day to day lives, with their little ones.

Please feel free to join

Oh wow

2006-01-21T01:18:00.000Z

I am mortally embarrassed by the fact that it is 1.15am and I can't sleep, I know I'm going to more than pay for it tomorrow...but when you can't sleep you can't sleep.

Anyway I thought I'd go and do some work on Michael's website, because I haven't updated in a long time, and thought it was about time I did.

Only to discover I've exceeded the bandwidth and they've frozen the website!! Hmmmm wonder if I've had lots of visitors this month!!

So my appologies but you can't get into Michael's website tonight, I've sorted more bandwidth, hopefully it will be back tomorrow!!

Dressing up using my Imagination

2006-01-18T19:04:00.000Z

Just Call me Sporta-Stephanie

make it myself!

2006-01-18T09:47:00.000Z

So what happens when, Mum is upstairs putting clothes away and Michael wants a drink??

He makes it himself, which is wonderful, (ok maybe not,) for most children I guess it would be seen as a step towards independance, and I guess, it is the same for Michael.

BUT the one thing that worries me and sets off warning bells in my head, is his lack of a sense of danger. It's how we balance his need to do things for himself with his awareness of the dangers.

The other kids will come find mum or shout "mum I want a.......??" but not Michael, he never has done.......I want therefore I will have.

If he is going to continue to make himself drinks, then we need to work on; doing it safetly and also making it drinkable!!

The milkshake carton was full, so in that mug of milk is 350gms of powder!! YUCK!!! It didn't dissolve in the milk, there was just too much powder for the milk to cope with it. It just sat in the mug, a pink gloopy mess!!

It just wasn't drinkable, which is a real shame, but on the positive side, he didn't spill the milk which is awesome!!

As a Parent

2006-01-15T21:29:00.000Z

This is frightening

http://news.bbc.co.uk/1/hi/england/norfolk/4591850.stm

We send our children to school thinking they will be safe, and that no harm will come to them, and yet here we are, with our Goverment Ministers approving convicted sex offenders, to teach.

It makes it all the more scary in light of what I have just read here ...."what do we say?" What Jordan's mum discovered and the trauma Jordan went through, that here we are in the UK with our goverment giving the green light to sex offenders to work in schools.

Saturday Club

2006-01-14T23:50:00.000Z

This was a whole new adventure for us this morning, we've not done Saturday Club before...

Michael's school run a club on a Saturday morning, for the children with Autism and their siblings, they had a place become available and wanted to know if we wanted it for Michael.

So this morning, after our little session with the Lazy Town album, we all went off to school to see what it was like.

J, unfortunatly fell outside the main door to the school, which managed to put a dampner on his enthusiasm, but when I got out from cleaning up the war-wound, Daddy was throwing himself into the "keep-fit" activity that was going on, trying to encourage Michael to join in.

Michael was somewhat confused by being in school, but doing something totally different to what he would normally be doing. His classroom was locked, only some of his class mates were there, his teacher wasn't there....so it took him a little while to adjust to being there to do something different, and I have to confess to starting to wonder if we'd done the right thing in bringing them. J, with his injury took a long time to actually come round, and for a while no amount of persuasion etc, would get him to budge.

But can I say they had a ball, they had a wonderful time, after keep fit, they got the choice to do Computer's, Art or Cookery.

This is the point at which both Michael and F. thawed out, they opted for Cookery, making Pizza's. Both love cooking, so really threw themselves into rolling out dough, spreading tomato sauce on the pizza base and then the cheese etc!!

After going to look around the other rooms I ended up in cookery with J too, but he didn't want to take part, he just sat in the corner looking and feeling really miserable, so DH made his Pizza!! He does find it difficult going into a new enviroment, filled with people he doesn't know, so the fall just added insult to injury with him.

But by the time snack time, and outside play-time came even J had a grin on his face, as he scooted round the play-ground on a two wheeled scooter.........

On the way home the three of them chatting excitedly about what a nice time they'd had and wanting to know if they could go back tomorrow!!!! So I think this may have been a success!!

LazyTown the Saga!!

2006-01-14T23:05:00.000Z

And so it continues,

we had melt down this morning over the Lazy Town album, not wanting it on the CD player in the house............ but in the car! I had thought putting it on in the house so we could listen to it before we left for Saturday Club, would be a good idea....didn't take me long to discover, it wasn't one of my better ideas!

It went on in the car on the way to Saturday Club, it was on in the car on the way home from Saturday Club and it followed us into the house........where it has been in the CD player all day!!

So we have sung and danced along to LazyTown's Album .......

Click here : this is the Nick Jnr Radio page if you move the dial to the picture of Sporticus you too can sing along with Lazy Town.......... believe me, they are those types of songs that get in your head, and you'll find yourself humming!!!

So now the million dollar question is - do I do him any favors, in pandering to his "obsessions" should we realistically be working towards losing this behavior?

If so how??? (Ok I know that's two questions!!)

Happy Boy

2006-01-14T21:35:00.000Z

This is Michael on discovering that Stephanie has ears, just like his!!

Stephanie Has Ears

2006-01-13T22:47:00.000Z

Andrea is wonderful, the saviour of my sanity!!

Stephanie has ears!

LazyTown - my problem

2006-01-12T21:08:00.000Z

Michael loves LazyTown, He loves the music, the singing, the dancing, the good guy, the bad guy, the bright colours everything.......

BUT............... I have a problem....I don't believe I'm about to post this....I really don't believe that I am about to write what I am about to write.

I need a picture, and if anyone can provide this picture believe me I would be incredibly grateful.. I need a picture of Stephanie's ears! (Believe me it feels really strange asking for this!!)

No ears...... in any of the pictures of Stephanie, so therefore in my son's little world........ Stephanie has no ears.

Yes, you and I both know, that Stephanies ears are in fact under her big pink wig, we know they are there.......but Michael can't see them, so to him they are missing. Please believe me when I say that it is distressing him greatly that Stephanie has no ears!

LazyTown

2006-01-12T21:00:00.000Z

Welcome to LazyTown

LazyTown is a funny, fresh show that blends movement, music, comedy and great storytelling in a colorful, fast-paced, upside-down world.

Stephanie comes to LazyTown from the outside world and meets a zany mix of kids and grownups, including the world’s laziest super-villain, Robbie Rotten.

Fortunately for Stephanie, LazyTown is also home to Sportacus, an athletic super-hero who jumps, leaps and flips his way across LazyTown while helping Stephanie navigate between healthy lifestyle choices and easy but unhealthy ones.

The unique look of LazyTown combines the worlds of CGI, puppets and live characters. The stories are always lively and entertaining, motivating solid values. LazyTown may have the laziest name on Earth, but it’s jam-packed with action, energy and a powerful message that tells all kids they have the will to succeed.

LazyTown makes you feel good

An Update of sorts!

2006-01-11T23:26:00.000Z

So what has been happening on this Preemie's journey over the last month or so, since I actually sat down and wrote anything properly!

We had a visit with the Paed, who overall, was pleased with Michael, despite dodgy scales and height measuring equipment, his height and weight are good! We had a discussion about certain area's of a little boys anatomy that have not put in an appearance yet!! So she has said she'll follow up our GP's referal letter, with one of her own. So we're now waiting on an appointment with the surgeon!

I also mentioned my concerns that Michael may have some adenoid issues, and what was the possibility of a referral to Ear Nose and Throat?? Before I knew where we are, we're talking about how obstructive sleep apnea is a possibility.

Apparently this is not uncommon in children who have the kind of swallowing issues that Michael has, the throat collapses whilst they sleep....so the Paed has said she will write to Michael's Resp, requesting an assessment of Michael's sleep.

We have an appointment with the Resp at the end of the month, so I'll let you know how that goes!

The Dietician has changed Michael's formula - is that what it's called or is it more a liquid feed?!

Anyway, we are no longer on Nutrini we now have Tentrini, and instead of 200ml bottles we now have to find space for 500ml bottles!! Tiny things they are - yeah - who am I kidding, they're huge, they are bigger than a pint glass!

We also managed to feed him with completly the wrong feed for a week - yes I know that makes me an appalling mother, the bottles are the same, the labels are the same colour, this was our first shipment of this feed, and neither I nor DH, actually realised till we opened the next box that what we'd been feeding Michael up until that point was adult feed!! Luckily he appears to have survived without any harm being done!

I guess the downside of playing this game for any length of time is that you think you can do it in your sleep..........when something like this happens and you realise that you can't!

New Year

2006-01-11T21:59:00.000Z

So one of my resolutions for this year has to be to try to keep this up on a daily basis. I admit that hasn't been that easy just recently, and it's not because I haven't had anything to write about, I have. I just don't seem to have found the time....that and a fair amount of reflection on if I wanted to continue with this or not.

I don't think I shared this, but I managed to get a few days away in Rome, back in November, and can I say it seems like a million years ago now!! But it was wonderful, Rome is the most amazing place, my friend and I stayed in a hotel close to the Spanish Steps, so most of central Rome was within walking distance, the Colosseum was 20 mins away.

I have to say that there is something incredibly moving about the Colosseum, knowing what occured in that arena one of the first things you see is this:-

a wooden cross....

Rome is the most amazing place, and I wish we'd had more time than the two days we managed, I would love to have stayed longer.

If you ever go to Rome, you have to try the Ice-Cream it is amazing!!!! Am busy trying to work out where to go to next, do I go back to Rome or try somewhere else in Italy!!

Double Edged Sword

2006-01-06T15:07:00.000Z

I know I haven't posted in a long time, and I must apologise for that, not that I'm sure anyone actually reads this blog, but if you do, then thank you!

I have been in reflective mood, wondering if I have created some kind of monster - and no I'm not talking about Michael, although he has been recently....... more about that later.

It stems from Shelley having Jacobs photos stolen, and used on a false website, some person kinda figured they'd get off on having preemie twins, and introduced themselves on a premature baby forum.

Anyway it got me kinda thinking, about not only my blog, but Michaels website

I created Michaels website because I wanted to share the reality of life with a premature baby. To show what it's really like to live with the fallout, the rollercoaster ride of emotions that we faced, the reality of disability and the days of tears, frustration and anger, trying to get your child's needs met, the side not portrayed in the media, and in my experience, not shared by the Dr's either.

I am fed up with the amount of wonderful preemie success stories that float around, proclaiming what wonders are being done to save such tiny babies. There is no thought to the realistic side of saving a preemie, there is no information shared with future preemie parents, about the reality of these miracles. Headlines scream of the "Worlds Smallest Baby goes Home", but no-one goes back 5 years later to see just how this child is doing.

More often than not you do not skip off happily into the sunset with this perfect miracle child, some are lucky, some do........the very real side to life with one of these miracles, for many parents, is being dragged kicking and screaming into a world of Special Needs. Fighting anyone and everyone to get support and services for your child.

So I was honest and open about our lives over the last 6 years, I have shared personal photo's, videos and memories. I have described the anguish we felt and continue to feel, and the aim of this was, that other parents of preemies would know that they are not alone. My hope also being that any of the professionals we deal with, that may wander across the site, would sit up and take notice of this world from a parents perspective.

I know this has happened because I've had contacts from professionals who wanted to use Michael's site in teaching the next generation of professionals.

Unfortunately my site is also open to abuse, and this is the bit I have struggled with...in sharing so much information, have I left other preemie parents open to abuse by those who think it would be a good idea to pretend to be preemie parents??

I sincerely hope not.

Spot the Problem I have

2006-01-06T15:02:00.000Z

with this article!! Kristina does this remind you of anything??

The Vulnerable Child

What is the Vulnerable Child Syndrome?

Sometimes parents continue to think of their former preemie as fragile and susceptible to problems even though the child is physically and developmentally healthy. They become overly protective, worry excessively, and unknowingly slow or change their child's development. The former preemie may fail to develop self confidence and/or a sense of independence.

How can I prevent the Vulnerable Child Syndrome?

First, try to interact with this child like you would if s/he had been born at term. Encourage socialization and age-appropriate activities.

When considering expectations and when to introduce activities in the first two years of life, use the child's "corrected age", his/her age corrected for the number of weeks of prematurity. For example, if your baby is ten months old and was three months premature, your expectations should be that for a seven month old. After age two, you do not need to correct for prematurity.

Things you can do to prevent the vulnerable child syndrome:

Encourage interactions with other children their age
Let them do things by themselves when they can
Let them have opportunities to make decisions; give them choices
Find play experiences outside your home, such as at parks, play groups
Give words of praise when they do things independently
Don't be too quick to intervene in trial and error learning
Set appropriate limits and be consistent with them
Establish consistent routines so they know what to expect and can develop independence in following the routine
Don't speak for them if they are capable of expressing themselves
Talk to them in age-appropriate language, (not baby talk to a 3 year old)

Thank you to everyone

2005-12-23T22:03:00.000Z

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

2005-12-19T19:37:00.000Z

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

2005-12-02T13:09:00.000Z

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

2005-12-02T12:57:00.000Z

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

2005-10-30T10:07:00.000Z

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!

2005-10-26T21:28:00.000+01:00

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

2005-10-21T10:02:00.000+01:00

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

2005-10-17T21:43:00.000+01:00

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!!

2005-10-15T21:45:00.000+01:00

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

2005-10-15T11:10:00.000+01:00

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

2005-10-13T20:53:00.000+01:00

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

2005-10-12T19:23:00.000+01:00

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!!

2005-09-14T18:59:00.000+01:00

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

2005-09-14T10:27:00.000+01:00

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

Well this is it this month!

Barney and Michael

2005-09-04T00:01:00.000+01:00

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

2005-09-02T18:35:00.000+01:00

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

2005-09-01T22:21:00.000+01:00

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???

2005-08-31T13:30:00.000+01:00

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

2005-08-29T21:04:00.000+01:00

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

2005-08-29T20:24:00.000+01:00

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

2005-08-08T04:07:00.000+01:00

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???

2005-08-05T22:31:00.000+01:00

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

2005-07-29T09:18:00.000+01:00

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!!

2005-07-28T22:23:00.000+01:00

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

2005-07-28T21:29:00.000+01:00

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!!

2005-07-28T21:25:00.000+01:00

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

Extension

2005-07-28T21:20:00.000+01:00

Extension from the back.

The New Family Room!!

Pica

2005-07-21T22:59:00.000+01:00

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

Tomorrow

2005-07-21T22:52:00.000+01:00

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!!

2005-07-21T22:39:00.000+01:00

At last the roof is finished!!

Ever have

2005-07-20T21:43:00.000+01:00

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

2005-07-20T15:05:00.000+01:00

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

2005-07-20T10:15:00.000+01:00

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

2005-07-18T11:00:00.000+01:00

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

2005-07-18T09:36:00.000+01:00

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!

2005-07-17T20:38:00.000+01:00

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

2005-07-17T20:26:00.000+01:00

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???