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?
Friday, July 29, 2005
Thursday, July 28, 2005
Spooky!!
Will I ever get used to this do you think???
It still takes me by surprise when I come across one of Michael's little "lining up" sessions!!
Goat Boy
We have been away since Monday, we went to Grandma's for a couple of days!
Tuesday we went to a farm near Lincoln, the kids love it here, they have a lovely selection of animals some in pens and some wandering around, and with it being summer lots of babies!!
Michael was really taken with the goats, so we bought some animal feed and Michael fed the goats.
See the one he's feeding in the picture?? Well I decided I was going to feed some of the smaller goats, and this one, well she wasn't very impressed with my feeding the babies.......so she bit me! I have a nice bruise on my arm to show for it too!!
Anyway we got back today, and it was 3 hours of torture on the way home, almost crashed the car, whilst yelling at Michael, for kicking his brother!!! How do you control a child who is at the back of the car, (right at the back of the car, so he can't open doors and windows!!) who seems to almost have been taken over by some other being, i.e. developed two horns and a tail, and is screaming, yelling and generally pushing all the right buttons!! Michael knows just which buttons to push in order to wind others up; especially his oldest brother, and very, very successful at it he is too!!
My stress levels through the roof...doesn't help that I've been away for 4 days and forgot to take my tablets with me when we went away! Ooooops!! As the days passed I could feel my coping skills lessening...
When we got home the house is in chaos!! Me thinks it was perhaps not a good idea to have come back!! So I think we may well be going away again at the weekend, and leaving Dad at home with the builders!
I have to say though the extension is looking great, all the scaffolding is down, the windows are in, and the partition walls are down, so we can now get into the new part of the house! I've posted some pictures below.
The Plasterers come in Monday, I think we need to be away whilst the walls are being plastered, because I can see the "art work" that could well appear before the walls dry!!
Thursday, July 21, 2005
Tomorrow
Is the last day of freedom, as it's the last day of school for the summer holidays, how am I going to get through the next 6 weeks, with my sanity still intact!!
Wednesday, July 20, 2005
Ever have
One of those days where you end up wishing you'd pulled the duvet up in the morning, and not bothered getting out of bed??
Been one of those days today!! Please don't ask what it's all about, because I'm not 100% sure myself. The mood has not been good today, and I'm glad it's over, and the kids are in bed. Not sure I'll be up for much longer myself tonight, I just want to go and sink into a deep sleep, where it all disappears around me, and I don't have to deal with it.
Been one of those days today!! Please don't ask what it's all about, because I'm not 100% sure myself. The mood has not been good today, and I'm glad it's over, and the kids are in bed. Not sure I'll be up for much longer myself tonight, I just want to go and sink into a deep sleep, where it all disappears around me, and I don't have to deal with it.
Some Mothers
So I was wandering around the My Documents Folder in my computer tonight, I have so much in there that I need to get sorted out, delete, save, put in the right place etc, I was looking for some research into outcomes for premature infants when I came across this. Now I don't seem to have saved who wrote this so I can't credit it to anyone, so if it was you, I appologise for not having been able to credit it. Infact I don't even remember where I found it.
But it is another one of those things written along the same lines as "Welcome to Holland"
Some Mothers Get Something More.
Expectant mothers waiting for a newborn's arrival say they don't care what sex the baby is.
They just want it to have ten fingers and ten toes.
Mothers lie.
Every mother wants so much more. She wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin. She wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly. She wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two).
Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class. Call it greed if you want, but a mother wants what a mother wants.
Some mothers get babies with something more.
Maybe you're one who got a baby with a condition you couldn't pronounce, a spine that didn't fuse, a missing chromosome or a palette that didn't close. The doctor's words took your breath away. It was just like the time at recess in the fourth grade when you didn't see the kick ball coming and it knocked the wind right out of you.
Some of you left the hospital with a healthy bundle, then, months, even years later, took him in for a routine visit, or scheduled her for a well check, and crashed head first into a brick wall as you bore the brunt of devastating news. It didn't seem possible. That didn't run in your family. Could this really be happening in your lifetime?
I watch the Olympics for the sheer thrill of seeing finely sculpted bodies. It's not a lust thing, it's a wondrous thing. They appear as specimens without flaw -- muscles, strength and coordination all working in perfect harmony. Then an athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler. There's no such thing as a perfect body. Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, therapy or surgery.
Mothers of children with disabilities live the limitations with them. Frankly, I don't know how you do it. Sometimes you mothers scare me. How you lift that kid in and out of the wheelchair twenty times a day. How you monitor tests, track medications, and serve as the gatekeeper to a hundred specialists yammering in your ear.
I wonder how you endure the clichés and the platitudes, the well- intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike.
I even wonder how you endure schmaltzy columns like this one -- saluting you, painting you as hero and saint, when you know you're ordinary. You snap, you bark, you bite. You didn't volunteer for this, you didn't jump up and down in the motherhood line yelling, "Choose me, God. Choose me! I've got what it takes."
You're a woman who doesn't have time to step back and put things in perspective, so let me do it for you. From where I sit, you're way ahead of the pack. You've developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, counter-balanced against the stubbornness of an Ozark mule.
You are the mother, advocate and protector of a child with a disability. You're a neighbor, a friend, a woman I pass at church. You're a wonder.
But it is another one of those things written along the same lines as "Welcome to Holland"
Some Mothers Get Something More.
Expectant mothers waiting for a newborn's arrival say they don't care what sex the baby is.
They just want it to have ten fingers and ten toes.
Mothers lie.
Every mother wants so much more. She wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin. She wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly. She wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two).
Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class. Call it greed if you want, but a mother wants what a mother wants.
Some mothers get babies with something more.
Maybe you're one who got a baby with a condition you couldn't pronounce, a spine that didn't fuse, a missing chromosome or a palette that didn't close. The doctor's words took your breath away. It was just like the time at recess in the fourth grade when you didn't see the kick ball coming and it knocked the wind right out of you.
Some of you left the hospital with a healthy bundle, then, months, even years later, took him in for a routine visit, or scheduled her for a well check, and crashed head first into a brick wall as you bore the brunt of devastating news. It didn't seem possible. That didn't run in your family. Could this really be happening in your lifetime?
I watch the Olympics for the sheer thrill of seeing finely sculpted bodies. It's not a lust thing, it's a wondrous thing. They appear as specimens without flaw -- muscles, strength and coordination all working in perfect harmony. Then an athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler. There's no such thing as a perfect body. Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, therapy or surgery.
Mothers of children with disabilities live the limitations with them. Frankly, I don't know how you do it. Sometimes you mothers scare me. How you lift that kid in and out of the wheelchair twenty times a day. How you monitor tests, track medications, and serve as the gatekeeper to a hundred specialists yammering in your ear.
I wonder how you endure the clichés and the platitudes, the well- intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike.
I even wonder how you endure schmaltzy columns like this one -- saluting you, painting you as hero and saint, when you know you're ordinary. You snap, you bark, you bite. You didn't volunteer for this, you didn't jump up and down in the motherhood line yelling, "Choose me, God. Choose me! I've got what it takes."
You're a woman who doesn't have time to step back and put things in perspective, so let me do it for you. From where I sit, you're way ahead of the pack. You've developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, counter-balanced against the stubbornness of an Ozark mule.
You are the mother, advocate and protector of a child with a disability. You're a neighbor, a friend, a woman I pass at church. You're a wonder.
Sports Day
It was sports day at school yesterday, unfortunately the schools around here don't seem to be very well coordinated, so not only was it Michael's sports day, but it was J's sports day as well!! Both at the same time, at different schools, in different towns!!
Last year I only had to run between opposite ends of the same school field!! This year I was thinking there was no way, I was going to be able to do both!!
Any ideas as to how your supposed to split yourself in two, so that you can be at both sports days at the same time!
When DH returned home Monday night, from his weekend away. I thought he would be going straight to work, (first night shift), but it turned out he'd taken the night off, which meant he was around yesterday, so he went to Michael's sports day, and I did J's...BIG sigh of relief!!
I can't tell you a lot about Michael's sports day, except that he got a sticker for every race that he took part in. He did well, and seemed to enjoy himself!! (Oh and DH took part in a lot of the races too, apparently photo's to follow!!)
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 !!!
So when it came to handing over the stickers, things fell apart !!!
Monday, July 18, 2005
Bliss Research
Bliss have done some research into the shortage of nurses in neo-natal units and the effects that this is having on premature babies, you can read the report here
Probably going to make myself really unpopular here, but to be honest I'm used to it, having spent the last 5 or so years fighting everyone in sight, to get Michael the support and services that he needs, that we need as a family in order to survive.
I realise Bliss is a Charity that works to improve things for babies in Neo-natal Units, and the whole idea behind this research was to show that things are not good for these special and vunerable babies. I'm not saying it's wrong to save these little ones, so don't take this the wrong way, it's just these little ones don't stay little ones forever, they grow up. Stating the obvious -yes, I know!
Who fights for these babies when they're no longer babies?? Who out there is trying to improve things for those babies that grow into children with special needs?? Who is doing the research and speaking out about the lack of support and services available to families pushed to the edge of crisis, because they are dealing with the fallout??
I know I'm not the only mum who has a child who survived the whole neo-natal experience with long term implications and complex needs, but sometimes it feels like it.
Probably going to make myself really unpopular here, but to be honest I'm used to it, having spent the last 5 or so years fighting everyone in sight, to get Michael the support and services that he needs, that we need as a family in order to survive.
I realise Bliss is a Charity that works to improve things for babies in Neo-natal Units, and the whole idea behind this research was to show that things are not good for these special and vunerable babies. I'm not saying it's wrong to save these little ones, so don't take this the wrong way, it's just these little ones don't stay little ones forever, they grow up. Stating the obvious -yes, I know!
Who fights for these babies when they're no longer babies?? Who out there is trying to improve things for those babies that grow into children with special needs?? Who is doing the research and speaking out about the lack of support and services available to families pushed to the edge of crisis, because they are dealing with the fallout??
I know I'm not the only mum who has a child who survived the whole neo-natal experience with long term implications and complex needs, but sometimes it feels like it.
Music
It's funny how music can mean so many different things to different people. I've added a video of Rob Thomas, "don't wanna be lonely anymore" to the blog, if you don't like it you can always switch it off. Please feel free too.
I bought the album at the weekend, I've heard the song on the radio in the car a few times, I have to say I fell in love!! Ok so I know absolutly nothing about this guy, where he's come from, what he was doing previously etc. But I love this song!!
Ok, so back to the point of this post...the song...listen to it, yes it's about relationships, but in my twisted little world, I can relate to so much of it, in our experience of raising Michael. Ok so now you all know, I've well and truly fallen off the planet!!
So which bits do I mean! Please let me explain!!
"Now it seems to me
that you know just what to say
but words are only words
can you show me something else,
can you swear to me
that you'll always be this way
show me how you feel
more than ever,
i don't wanna be lonely no more
i don't wanna have to pay for this
(*i don't wanna another 'Dr' at my door*)
its just another heartache on my list,
i don't wanna be angry no more
but you know i could never stand for this.
I don't wanna be lonely no more"
*not the right words - but catch my drift!!!
I think anyone who reads this, or know's me, or has visited Michael's website will know that we didn't have a good time of it through NICU etc. and you'll know how we ended up feeling let down and to a certain extent I feel lied to...so maybe the words should go more like this!!
Now it seems to me
that you know just what to say
but words are only words,
can you show me something else
can you swear to me
that he won't always be this way,
tell me what you mean
i don't wanna be lonely no more
i don't wanna have to pay for this
i don't want another professional at my door
it's just another heartache on my list
i don't wanna be angry no more
but I know I can't stand for this
so when you tell me that you can help me
know for sure.
Ok so singer song writer I am not and sometimes I just wish I could express how things really are, like the Holland Schmolland post!!
I would love to be able to create something like that!
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!
Sunday, July 17, 2005
Hot!
Well what a weekend, I know I've not written much around here this last week or so, but it's been fairly busy, and I have to admit to falling asleep fairly early!!
It will be another early night tonight too, daughter dear was up at 2am, then I had to get up at 3.30am to get oldest son to school for 4am for his school trip to the Rhineland, Germany, I got back from seeing him off at 5am, to be woken at 6am by number 2 son!! Tired!! Just slightly!!
We spent the day in the paddling pool, (yes me too!!) and the garden today, wow it has been so hot, and despite factor 50 sunblock for the kids, Michael seems to have caught the sun on his back! ---- One very embarrassed Mum here!! So after bath tonight I have smothered the kids in aftersun, and please, fingers crossed, for a good night!! He'd not burnt, just a little pink, which I have to say is fairly unusual for Michael, normally he just goes a golden brown colour!
Only one more week to go before they break up for the summer holidays, if the weather stays this way it's going to be a wonderful summer break!! Especially with the ongoing building work and scaffolding etc.............how on earth am I expected to keep the kids indoors!! I just don't even want to think about it!
On another note, I am on my own again this weekend, apart from last night when my sister stayed over.
This is also the other reason I wasn't able to get near the Computer during the last week or so; it's been otherwise occupied, route planning, places to go, and things to see!!
DH is off with his two-wheeled mistress to the wilds of Scotland - He's gone to Fort William, one area of Scotland I've not been to yet, and I am insanely jealous as I would love to go. I have driven past the signs for Fort William but never actually managed to make it down into the town! Maybe one day!!
It will be another early night tonight too, daughter dear was up at 2am, then I had to get up at 3.30am to get oldest son to school for 4am for his school trip to the Rhineland, Germany, I got back from seeing him off at 5am, to be woken at 6am by number 2 son!! Tired!! Just slightly!!
We spent the day in the paddling pool, (yes me too!!) and the garden today, wow it has been so hot, and despite factor 50 sunblock for the kids, Michael seems to have caught the sun on his back! ---- One very embarrassed Mum here!! So after bath tonight I have smothered the kids in aftersun, and please, fingers crossed, for a good night!! He'd not burnt, just a little pink, which I have to say is fairly unusual for Michael, normally he just goes a golden brown colour!
Only one more week to go before they break up for the summer holidays, if the weather stays this way it's going to be a wonderful summer break!! Especially with the ongoing building work and scaffolding etc.............how on earth am I expected to keep the kids indoors!! I just don't even want to think about it!
On another note, I am on my own again this weekend, apart from last night when my sister stayed over.
This is also the other reason I wasn't able to get near the Computer during the last week or so; it's been otherwise occupied, route planning, places to go, and things to see!!
DH is off with his two-wheeled mistress to the wilds of Scotland - He's gone to Fort William, one area of Scotland I've not been to yet, and I am insanely jealous as I would love to go. I have driven past the signs for Fort William but never actually managed to make it down into the town! Maybe one day!!
Centiles
I've received a written copy of Michael's clinic report from our appointment with the Community Paed on the 5th July!!
Height - 50th Centile, Weight - 50th Centile.
How can Height and Weight differ so much in two days - Given that on the 7th July he was assessed as being 25th for Height and 75th for Weight???
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???
Monday, July 11, 2005
ICE Campaign
East Anglian Ambulance Service have launched a national "In case of Emergency (ICE)" campaign with the support of Falklands war hero Simon Weston, and in association with Vodafone's annual life savers award.
The idea is that you store the word "ICE" in your mobile phone address book, and against it enter the number of the person you would want to be contacted "In Case of Emergency".
In an emergency situation ambulance and hospital staff will then be able to quickly find out who your next of kin are and be able to contact them. It's so simple - everyone can do it.
The idea is that you store the word "ICE" in your mobile phone address book, and against it enter the number of the person you would want to be contacted "In Case of Emergency".
In an emergency situation ambulance and hospital staff will then be able to quickly find out who your next of kin are and be able to contact them. It's so simple - everyone can do it.
Resp Appt and other things
I should have posted this last Thursday, but it didn't seem appropriate, with everything that was happening in London. I was ironing, the house was empty, all the children in school and I thought I'd have some normality, catch up on the ironing and watch day-time T.V. no day-time TV just the news as events unfolded. The builders were putting in floor boards in the new bedroom - ok, so maybe not really an empty house, but as close as we get at the moment.
Thursday afternoon, Michael had an appointment with the resp consultant, it was a good appointment, according to their scales Michael is now on the 75th centile for weight whilst just below the 25th for height so we're talking about next time cutting back on the calories. We've had to increase the amount of fluids he gets in the hopes that this may water down some of his weight gain. Do the words diet and preemie's go together??
We also saw a neo who looked after Michael from 11 weeks of age when he was transferred there for his hernia surgery, and possible laser eye surgery. This Neo also became Michaels Cardiologist as he was the Consultant who scanned Michaels heart and discovered the ASD and the Pulmonary Stenosis. I have all the time in the world for this Dr, he is a lovely caring guy, who always treated us as equals, and made sure he found the time to explain what was happening with Michael. I guess he is also the reason we realized just how badly we had been treated, and how neglected we'd been at the other NICU.
Anyway, this wonderful guy has the most amazing memory, please bear in mind that he only became involved in Michaels care when he was 11 weeks old, and that he discharged Michael almost 3 years ago, the number of patients that he has, and see's, and he not only remembered us, but we had a very interesting conversation about how he'd only been talking about us the week before. It was lovely to see him again, and I guess he makes me realize that there are some wonderful people who work for our Health Service!
Thursday afternoon, Michael had an appointment with the resp consultant, it was a good appointment, according to their scales Michael is now on the 75th centile for weight whilst just below the 25th for height so we're talking about next time cutting back on the calories. We've had to increase the amount of fluids he gets in the hopes that this may water down some of his weight gain. Do the words diet and preemie's go together??
We also saw a neo who looked after Michael from 11 weeks of age when he was transferred there for his hernia surgery, and possible laser eye surgery. This Neo also became Michaels Cardiologist as he was the Consultant who scanned Michaels heart and discovered the ASD and the Pulmonary Stenosis. I have all the time in the world for this Dr, he is a lovely caring guy, who always treated us as equals, and made sure he found the time to explain what was happening with Michael. I guess he is also the reason we realized just how badly we had been treated, and how neglected we'd been at the other NICU.
Anyway, this wonderful guy has the most amazing memory, please bear in mind that he only became involved in Michaels care when he was 11 weeks old, and that he discharged Michael almost 3 years ago, the number of patients that he has, and see's, and he not only remembered us, but we had a very interesting conversation about how he'd only been talking about us the week before. It was lovely to see him again, and I guess he makes me realize that there are some wonderful people who work for our Health Service!
Friday, July 08, 2005
Wanted to share!
I found this poem on a forum I belong to for children with Special Needs......I just wanted to share!
Welcome to My Home....I think
by: Sharon Burleson, Clarksburg, WV
Welcome to my home. I think, I mean, maybe your welcome. I'm not sure yet.
When I get to know you, I'll know for sure. My child is disabled, and I need help to do all the things he needs done.
So I need you. He needs you too, because he gets worn out and bored with me, and sometimes he dislikes me about as much as I sometimes dislike him (please don't start making judgments about me -- we just got started. It's just that I'm honest, and as much as he is the sole reason for my existence, there are times when both of us wear thin).
Your agency sent you here. I called for help, but I don't get a choice who comes into my home and my life. You come at your convenience, usually between 9am and 3pm Monday thru Friday. I'm on my own evenings and weekends, when my other children tug at me, and want, and feel slighted, and offended, and I feel stretched to my limit.
You call and tell me your coming Tuesday morning, so I put the stack of unanswered mail, and the unpaid bills in the cabinet with the cereal bowls, race dirty and clean clothes up and down the stairs, shove toys and unmated shoes in closets and under beds, and run the gauntlet with 'Fantastic' to get fingerprints off everything. And then you call, and tell me you have to cancel, because of a meeting.
Oh, sure I understand, yes that's fine, Friday afternoon? Well, I was going to try to go to the library and maybe take a nap.......What? Oh, that's the only one you have? Well sure, I know it's important that you come. And we really need help. Fine....Friday at 1.30......We'll be here.
My husband resents people coming in and out of our home. He says he feels like he is living in a goldfish bowl. He says getting help means sacrificing our privacy and spontaneity. He can't scratch his stomach as he walks down the hall in his shorts anymore. Now he has to have clothes on, and suck in his gut, and put on company manners. And he hates it after you leave, because sometimes I cry, because I feel inadequate, and stupid, and foolish, and just plain wrong.
Sometimes you make me feel that way, when you act suspicious of what goes on when your not here, and try to trip me up, when we're talking, to find out if I'm doing the goals and objectives, or if I'm just taking the money and fudging the paperwork. Sometimes it's nothing you say or do, it's just that your perfectness unsettles my motherness. Sometimes when you are great I feel threatended, and because of others who came before you, I feel judged, and talked about, and as though you have met with others, and have developed a plan to implement on me.
I can't always tell when you're real, but my son can. So I watch him. If he responds and welcomes you, then I set aside my needs and cares, and let you have everything I have....including my son. I have to trust you, because he trusts you, and looks forward to your step on the porch.
What? Oh, good grief! I forgot your paperwork again! Wait,
I know it was here somewhere. I was working on it last week, just after the hot water heater burst, and right before my husband came home laid off.
Wait.....I think I wrote on the back when the bank called about the deposit to cover the overdraft. Yeah! I found them! Right behind the peanut butter, wait..... I'll just wipe them off a bit.
You know I used to be normal. I used to have control over my life, my time, my home. Having a disabled child turned my life upside down.
My priorities changed, what I would settle for changed, what I would ask for changed, who I would accept changed. All that changed because my child needs things, and people and idea's, and funding. So my life consists of meetings, regulations, documentation and paperwork, social workers and agency people. Policies and procedure mauals, and administrative decisions, delays and rumours of delays in checks. People not showing up when needed, people quitting and people showing up when they're not needed.
Please, don't judge me, and I'll try not to judge you.
You see in the long run, if I don't measure up, I am still his mother. So we're stuck with each other, and I'm willing to make the best of it. Help me to grow, help me to become better.
Accept me as a person, not the perfect saint.
I really DO know my child better than anyone else, so help me express that and put it to best use.
Walk with me a ways, not to judge me, but to understand my role within the heart of my family. Give me tools and words, and people, that like pieces in a jigsaw puzzle, interlock to allow for my strengths and compensate for my shortcomings.
Please don't push me past my endurance, because if you do, you'll see me at my worst; short-tempered, impatient, inflexible, and emotional. I'm no good to my son then, either. Each one of us has that fine line.
I try to recognise when I'm approaching my line, and usually that's when I'm most cranky and complaining to you. Please realize that one facet of me is the tired bitch, just as real and acceptable as the superwoman who overcomes unbelievable obstacles.
There are sunny days and then there are thunderstorms..... all part of a temperate climate.
Well, anyway, hi. Welcome to my home. I think
Sunday, July 03, 2005
Why are we cuddling??
Michael got out of the bath this morning, I've dried him off, and got him dressed, the first of many times I'll dress him today! Until I get fed up of re-dressing him, and then it will be birthday suit as usual.
He's playing 'boats', he's trying to climb up the end of the bunk-beds, and managed to get himself stuck. You could see it in his face, "now how do I get myself out of this one??"
I sat there watching him and knowing he was stuck, I waited for him to say, "Stuck" or "help"........but it never came, so I offered it. "Michael want help" (using the sign for help!)
Yes!!
As I was lifting him off the bunk bed I sat on the other single bed in the room, and pulled him down on top of me to give him a cuddle. His response! "W, W, W, W, W, Why having cuddle??"
When I said "it's nice to have cuddles, do you not like cuddles??" he just replied "Get up now" and left!
Sometimes I forget where we live!
He's playing 'boats', he's trying to climb up the end of the bunk-beds, and managed to get himself stuck. You could see it in his face, "now how do I get myself out of this one??"
I sat there watching him and knowing he was stuck, I waited for him to say, "Stuck" or "help"........but it never came, so I offered it. "Michael want help" (using the sign for help!)
Yes!!
As I was lifting him off the bunk bed I sat on the other single bed in the room, and pulled him down on top of me to give him a cuddle. His response! "W, W, W, W, W, Why having cuddle??"
When I said "it's nice to have cuddles, do you not like cuddles??" he just replied "Get up now" and left!
Sometimes I forget where we live!
Stuttering
Michael has developed a stutter, or maybe it's a stammer. It's appeared over-night, more or less, either that or it hasn't been as noticeable as it is now.
I rang the Speech and Language Therapist at School at the beginning of the week about it, just to see if it had been picked up at school or if it's just something he's doing at home. Turns out his class teacher has noticed, the SALT spent sometime with Michael, and is going to refer him to a SALT who specializes in dealing with children with stammers/stutters. It has been suggested that we speak really slowly to him and slur our words like we're drunk - pass the gin- far easier when you are drunk!!
As I said it has appeared from no-where, he didn't struggle like this 3 weeks ago, and suddenly it is taking him a long time to get out what he's trying to say. for example "I, I, I, I, I, I, I, I want juice" or he's left standing there with his mouth open and not a sound escaping from his lips! You can see the frustration in his face, as he tries to almost work out what it is he's trying to say.
I just think it's really odd, they did say that it can sometimes be a developmental stage that kids go through, especially when their vocab is fast expanding. But although 18 months ago, Michael was classed as non-verbal, his vocab has expanded over the last 18 months. It isn't new words he's struggling with it is every day words, like "I, is, want"
I wonder if it's tied in with his oro-motor issues, but part of me wonders if that was the case then surely this would have been happening since he started talking.
Watch this space on this one!!
I rang the Speech and Language Therapist at School at the beginning of the week about it, just to see if it had been picked up at school or if it's just something he's doing at home. Turns out his class teacher has noticed, the SALT spent sometime with Michael, and is going to refer him to a SALT who specializes in dealing with children with stammers/stutters. It has been suggested that we speak really slowly to him and slur our words like we're drunk - pass the gin- far easier when you are drunk!!
As I said it has appeared from no-where, he didn't struggle like this 3 weeks ago, and suddenly it is taking him a long time to get out what he's trying to say. for example "I, I, I, I, I, I, I, I want juice" or he's left standing there with his mouth open and not a sound escaping from his lips! You can see the frustration in his face, as he tries to almost work out what it is he's trying to say.
I just think it's really odd, they did say that it can sometimes be a developmental stage that kids go through, especially when their vocab is fast expanding. But although 18 months ago, Michael was classed as non-verbal, his vocab has expanded over the last 18 months. It isn't new words he's struggling with it is every day words, like "I, is, want"
I wonder if it's tied in with his oro-motor issues, but part of me wonders if that was the case then surely this would have been happening since he started talking.
Watch this space on this one!!
Friday, July 01, 2005
Schmolland or Holland!
I always thought I'd ended up in Holland, however having read the article underneath, I fast realised I'm in Schmolland!
I've put both the poem by Emily Pearl Kingsley, and the article by Laura Kreuger Crawford
Enjoy!!
Holland or Schmolland for you??
Holland Schmolland
by Laura Kreuger Crawford
If you have a special needs child, which I do, and if you troll the Internet for information, which I have done, you will come across a certain inspirational analogy. It goes like this:
Imagine that you are planning a trip to Italy. You read all the latest travel books, you consult with friends about what to pack, and you develop an elaborate itinerary for your glorious trip. The day arrives.
You board the plane and settle in with your in-flight magazine, dreaming of trattorias, gondola rides, and gelato. However when the plane lands you discover, much to your surprise, you are not in Italy -- you are in Holland. You are greatly dismayed at this abrupt and unexpected change in plans.
You rant and rave to the travel agency, but it does no good. You are stuck. After awhile, you tire of fighting and begin to look at what Holland has to offer. You notice the beautiful tulips, the kindly people in the wooden shoes, the french fries with mayonnaise, and you think, "This isn't exactly what I had planned, but it's not so bad. It's just different."
Having a child with special needs is supposed to be like this -- not any worse than having a typical child -- just different.
When I read this my son was almost 3, completely non-verbal and was hitting me over 100 times a day. While I appreciated the intention of the story, I couldn't help but think, "Are they kidding? We're not in some peaceful country dotted with windmills. We are in a country under siege -- dodging bombs, boarding overloaded helicopters, bribing officials -- all the while thinking, "What happened to our beautiful life?"
That was five years ago.
My son is now 8 and though we have come to accept that he will always have autism, we no longer feel like citizens of a battle-torn nation. With the help of countless dedicated therapists and teachers, biological interventions, and an enormously supportive family, my son has become a fun-loving, affectionate boy with many endearing qualities and skills. In the process we've created . . . well . . . our own country, with its own unique traditions and customs.
It's not a war zone, but it's still not Holland. Let's call it Schmolland. In Schmolland, it's perfectly customary to lick walls, rub cold pieces of metal across your mouth and line up all your toys end-to-end. You can show affection by giving a "pointy chin." A "pointy chin" is when you act like you are going to hug someone and just when you are really close, you jam your chin into the other person's shoulder. For the person giving the "pointy chin" this feels really good, for the receiver, not so much -- but you get used to it.
For citizens of Schmolland, it is quite normal to repeat lines from videos to express emotion. If you are sad, you can look downcast and say, "Oh, Pongo." When mad or anxious, you might shout, "Snow can't stop me!" or "Duchess, kittens, come on!" Sometimes, "And now our feature presentation" says it all.
In Schmolland, there's not a lot to do, so our citizens find amusement wherever they can. Bouncing on the couch for hours, methodically pulling feathers out of down pillows, and laughing hysterically in bed at 4:00 a.m. are all traditional Schmutch pastimes.
The hard part of living in our country is dealing with people from other countries. We try to assimilate ourselves and mimic their customs, but we aren't always successful. It's perfectly understandable that an 8 year-old from Schmolland would steal a train from a toddler at the Thomas the Tank Engine Train Table at Barnes and Noble. But this is clearly not understandable or acceptable in other countries, and so we must drag our 8 year-old out of the store kicking and screaming, all the customers looking on with stark, pitying stares. But we ignore these looks and focus on the exit sign because we are a proud people.
Where we live it is not surprising when an 8 year-old boy reaches for the fleshy part of a woman's upper torso and says, "Do we touch boodoo?" We simply say, "No, we do not touch boodoo," and go on about our business. It's a bit more startling in other countries, however, and can cause all sorts of cross-cultural misunderstandings.
And, though most foreigners can get a drop of water on their pants and still carry on, this is intolerable to certain citizens in Schmolland, who insist that the pants must come off no matter where they are and regardless of whether another pair of pants is present.
Other families who have special needs children are familiar and comforting to us, yet are still separate entities. Together we make up a federation of countries, kind of like Scandinavia. Like a person from Denmark talking to a person from Norway (or in our case, someone from Schmenmark talking to someone from Schmorway.), we share enough similarities in our language and customs to understand each other, but conversations inevitably highlight the diversity of our traditions. "My child eats paper. Yesterday he ate a whole video box." "My daughter only eats four foods, all of them white." "We finally had to lock up the VCR because my child was obsessed with the rewind button." "My son wants to blow on everyone."
There is one thing we all agree on. We are a growing population. Ten years ago, 1 in 10,000 children had autism. Today the rate is approximately 1 in 250. Something is dreadfully wrong. Though the causes of the increase are still being hotly debated, a number of parents and professionals believe genetic predisposition has collided with too many environmental insults -- toxins, chemicals, antibiotics, vaccines -- to create immunological chaos in the nervous system of developing children. One medical journalist speculated these children are the proverbial "canary in the coal mine", here to alert us to the growing dangers in our environment.
While this is certainly not a view shared by all in the autism community, it feels true to me.
I hope that researchers discover the magic bullet we all so desperately crave. And I will never stop investigating new treatments and therapies that might help my son. But more and more my priorities are shifting from what "could be" to "what is." I look around this country my family has created, with all its unique customs, and it feels like home. For us, any time spent "nation building" is time well spent.
-- The End --
Welcome to Holland
Welcome to Holland
By Emily Pearl Kingsley
I am often asked to describe the experience of raising a child with a disability.
To try to help people who have not shared that unique experience to understand it, to imagine how it would feel.............
It's like this................
When you're going to have a baby. It's like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make wonderful plans.
The Coliseum, The Michaelangelo David, The Gondolas in Venice. You may even learn some handy phrases in Italian, it's all very exciting.
After months of eager anticipation, the day finally arrives, you pack your bags and off you go. Several hours later the plane lands. The Stewardess comes in and says "Welcome to Holland".
"Holland?!?!?!?" you say, "What do you mean Holland????? I signed up for Italy. I'm supposed to be in Italy, all my life I've dreamed of going to Italy"
The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease.
It's just a different place.
So you must go out and buy new guide books. You must learn a whole new language, and you meet a whole new group of people you would never have met.
It's just a different place, it's a slower pace than Italy, less flashy than Italy.
But after you've been there a while you catch your breath, you look around and you begin to notice that Holland has Windmills, Holland has tulips, Holland even has Rembrandts.
Everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there, and for the rest of your life you will say, "Yes that's where I was supposed to go. That's what I had planned."
The pain of that will never, ever go away, because the loss of that dream is a very significant loss.
But if you spend your time mourning the fact that you didn't get to go to Italy, you may never be free to enjoy the very special, and the very lovely things about Holland.
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