Every day I try to make good decisions, be a good person but I hate that some days I just hate everyone & everything.
Life is amazing & wonderful, I am blessed etc etc I know how it goes. I know that tomorrow probably will be a better day & all that too, I know I have the courage because no matter what I get back up. But somedays I want to just lay on the floor & wallow in my sorrow, cry tears of heartache & be OK with that too. Some days are hard, too hard. It doesn't discount others & their sorrow & trauma nor does it mean mine should be belittled.
Thursday, 19 September 2013
Sunday, 21 July 2013
Big Decisions.
Nothing ever prepares you for having kids. Yep cliche I know but there really is no other way to put it. The thing is no-one ever warns you about the curve balls either because boy are they fun ! Yep sarcasm city here we come !
I thought at least by the second one I'd have had some clue but nope he threw his own curveballs & I know I sorta said the same in my last post here but when going thru in my own head this is all how it comes out.
The thing is we learn early on how to judge parents which is fair enough cause sorry if you choose to forward face your 4mth old in their carseat or actually put coca-cola into your babies bottle then yeah. we're gonna judge you. Judgey McJudgey pants right here. But aside from sheer stupidity there is line surely ? Aren't we all just trying our best ? Apart from those doing stupid things like above they honestly don't mean harm they just don't know any better. There are those who purposely do harm & they are an entirely different kettle of fish. They are not what I call parents. Cruel intentions aside parents really are just trying to wade thru it all hoping like all hell to get out unscathed & to either keep their kids alive or at the very least out of gaol.
I do admit to having to totally change my thoughts & views when I became a mum.
I soooooo was that childless woman who said " My child will never .... " ... Oh yes. Yes indeed.
Oh how they are the least of my problems now !!!
I never thought I'd become a parent of a child on the Spectrum let alone two. Never in a million years ever realised how hard & frustrating it would be & also how rewarding.
Never thought I'd find myself judged by those around me yet here we are.
It's been interesting to learn that just the diagnoses have caused controversy but wow even more so now the fact I have had to walk the hard line of medication. One of the freaking hardest paths ever. I honest to all gods thought I had faced some pretty difficult stuffs, thought I was strong & battle hardened. Instead OH HELLO NEW CURVEBALL !!!
For the last two years it's been there, lingering in the background. I had high hopes it would never happen, that we could solve everything in various other ways. I have tried various therapies, attended various seminars with experts along with seeing a Psychologist every three weeks.
Yet here we are.
The very place I never wanted to be.
It is so easy to be on the outside, to sit there thinking " I would NEVER do that ". That was so me years ago. So easy to have absolutely no idea what it is like to watch your child crumble into a million pieces in front of you.
I get that medication is such a hot topic along with the likes of the diagnosis or ADHD or ASD because it seems everyone has an opinion on it these days. Cause yanno they have not even dealt with it but are obviously experts cause they read something on the net the other day & it told them what they wanted to hear. If that makes them feel better then good for them but stop with the judging or assumption that it stands for others.
I agonised over it all, this wasn't a medication to stop an active child or to make him behave. This wasn't because I couldn't handle 'him'. I am a big believer in not using medication especially when it's done in such a manner we are changing a child, not allowing them to be themselves because they need to fit in a box. This was a different decision.
My son is anxious. All. The. Time.
Not just run of the mill stuff, the kid has the weight of the world on his shoulders & then some.
You also then have the vicious circle of anxious child won't sleep which means being overtired which then in turn causes the anxiety to heighten & around & around & around & around we go.
I am currently struggling to keep my head above water at the moment with all of this, I am so out of my depth but am luckily surrounded by many great people & friends along with fantastic Psych & Paed but some days are hard. I am trying to keep his head above that water line too & it's a constant battle which scares me, scares me that such a small dude can have such big worries in life that weigh him down so greatly. He should be enjoying his childhood, not struggling & fighting with it.
Judge away at those who deserve the judgement but if you feel the need to be judging those doing their damned hardest, well I guess then that says a lot more about you.
I thought at least by the second one I'd have had some clue but nope he threw his own curveballs & I know I sorta said the same in my last post here but when going thru in my own head this is all how it comes out.
The thing is we learn early on how to judge parents which is fair enough cause sorry if you choose to forward face your 4mth old in their carseat or actually put coca-cola into your babies bottle then yeah. we're gonna judge you. Judgey McJudgey pants right here. But aside from sheer stupidity there is line surely ? Aren't we all just trying our best ? Apart from those doing stupid things like above they honestly don't mean harm they just don't know any better. There are those who purposely do harm & they are an entirely different kettle of fish. They are not what I call parents. Cruel intentions aside parents really are just trying to wade thru it all hoping like all hell to get out unscathed & to either keep their kids alive or at the very least out of gaol.
I do admit to having to totally change my thoughts & views when I became a mum.
I soooooo was that childless woman who said " My child will never .... " ... Oh yes. Yes indeed.
Oh how they are the least of my problems now !!!
I never thought I'd become a parent of a child on the Spectrum let alone two. Never in a million years ever realised how hard & frustrating it would be & also how rewarding.
Never thought I'd find myself judged by those around me yet here we are.
It's been interesting to learn that just the diagnoses have caused controversy but wow even more so now the fact I have had to walk the hard line of medication. One of the freaking hardest paths ever. I honest to all gods thought I had faced some pretty difficult stuffs, thought I was strong & battle hardened. Instead OH HELLO NEW CURVEBALL !!!
For the last two years it's been there, lingering in the background. I had high hopes it would never happen, that we could solve everything in various other ways. I have tried various therapies, attended various seminars with experts along with seeing a Psychologist every three weeks.
Yet here we are.
The very place I never wanted to be.
It is so easy to be on the outside, to sit there thinking " I would NEVER do that ". That was so me years ago. So easy to have absolutely no idea what it is like to watch your child crumble into a million pieces in front of you.
I get that medication is such a hot topic along with the likes of the diagnosis or ADHD or ASD because it seems everyone has an opinion on it these days. Cause yanno they have not even dealt with it but are obviously experts cause they read something on the net the other day & it told them what they wanted to hear. If that makes them feel better then good for them but stop with the judging or assumption that it stands for others.
I agonised over it all, this wasn't a medication to stop an active child or to make him behave. This wasn't because I couldn't handle 'him'. I am a big believer in not using medication especially when it's done in such a manner we are changing a child, not allowing them to be themselves because they need to fit in a box. This was a different decision.
My son is anxious. All. The. Time.
Not just run of the mill stuff, the kid has the weight of the world on his shoulders & then some.
You also then have the vicious circle of anxious child won't sleep which means being overtired which then in turn causes the anxiety to heighten & around & around & around & around we go.
I am currently struggling to keep my head above water at the moment with all of this, I am so out of my depth but am luckily surrounded by many great people & friends along with fantastic Psych & Paed but some days are hard. I am trying to keep his head above that water line too & it's a constant battle which scares me, scares me that such a small dude can have such big worries in life that weigh him down so greatly. He should be enjoying his childhood, not struggling & fighting with it.
Judge away at those who deserve the judgement but if you feel the need to be judging those doing their damned hardest, well I guess then that says a lot more about you.
Sunday, 2 June 2013
Ponderings of Awareness
Been thinking about this a lot lately & have struggled to work out how to put it all down in words. As you may have noted from the start I am not all that crash hot with words & can be random or confusing.
Bryce Courtenay I am not ... Stephanie Myer possibly. I kid. Maybe :P
Light It Up Blue was in April & April was also the month of Autism Awareness.
The thing is I am starting to think we are going backwards on a lot of things rather than moving forwards.
To me it seems to have become something people just roll their eyes over or make comments that are quite ignorant. Not necessarily because they want to be either but more so because they assume everything they see or hear in a lot of media hype etc. Double edged sword really. The media is the best way to get awareness out there yet it can also bite you.
Oh & can I also point out I don't mean awareness as in " QUICK ! Find a cure ". Nope. Definitely not into that. I am talking about awareness on a level that people start to see that differences whether it be because of sensory issues or the flappy happy kid are just as normal as the kid in a wheelchair, the kid with the hearing aids because ALL of those differences are OK. They are all within normal.
The thing is & I am hearing it more & more is the " Oh yes, THOSE kids. The ones the parents just don't want to parent. They just need a good smack " or " Yeah ASD has become the 'IT' diagnosis like ADHD was a few years ago. It's so easy to get the diagnosis that the parents use it to explain everything they have done wrong ". Although there can be those who think you are almost a god because ' I could never do your job ' or seem to think you have the patience of a saint etc. We've all said it to someone at some stage admittedly.
Sooo ummm yeah.
Ummm no.
It comes from so many who are ignorant of the processes involved, the soul searching parents go through & what ends up being something that while yes opens doors to access various therapies & funding can actually see other doors slam as parents around you start judging you. Funnily enough even more so than they already were because it seems something we do so brilliantly in the first place.
Even for those who have what can be labelled at NT kids ( Neuro-Typical ) we are judging them from the get go or the very least judging the child.
Do they sleep well ?
Are they keeping up with milestones ?
Are they a happy baby ?
I mean OK they are relevant to a point however really why do perfect strangers feel it necessary to ask you in the Supermarket whether your baby sleeps well ? I mean aren't there like a million other questions to ask other than that ? Or even just a statement such as " What a sweet baby " would suffice yet from the moment we venture out with our new wee bundle we are being almost bombarded with advice.
I could go into my ranting about how many will be bagging your choices of breast versus bottle, telling you to make baby cry it out because otherwise they will learn bad habits which just makes my blood pressure rise so I really don't think me going off on that ranting tangent will help anyone. I just wish we were more supportive of that new mother. We are often such fragile creatures in those first few months, learning about this precious new person now in our arms we really don't need the negatives because we certainly do a bluddy good job of all of that ourselves !!
Anyways the judgement seems to grow as the child does.
How soon did they have their first MacDonalds fries, whether you are using organic only produce & hand making everything you possibly can ... Look don't get me wrong I get all judgey pants too. I am not gonna sit here & act like I don't because some things simply are foolish & some downright dangerous. There is a difference though.
I do believe we need to stop listening to a lot of the crap around & 'experts' but then lies the problem of well some of these experts are the ones who advise the 'good stuff'. So what do we do ?
Aaaaaah the joys of parenting. It's like running in circles with a pot on your head & hitting it repeatedly with a wooden spoon.
The media tend to show us those who are either exceptionally gifted or those on the severe end of the spectrum. Yet it's called a spectrum for a reason. They show us the violence which is often extreme & the reality for many of us but don't show the gentle times, the love & fun.
As a mum of two gorgeously wonderful little male peoples who happen to have ASD diagnoses it seems like a battle ground some days & yes I do also know that a lot of what is said is of my own choosing on how to react. That is not lost on me ;) It can be hard though not to get defensive. All mums are of their children & when it feels like it's not just a parenting choice being judge but the child themselves then it does create a need to defend.
I openly admit to my parenting not being perfect. Can someone who is the perfect parent please come forward so we can allsmack you please pat you on the back ;)
I have said things to the boys I am not proud of through frustration & anger, I have smacked when I shouldn't have, I have even pondered whether leaving them sitting out the front with a sign 'FREE to good home ' might give me my sanity back ( Please note I do realise that isn't appropriate although so very VERY temptingevery so often way too many times this week ). I am far far from perfect & that is just it. Some days we manage well & I am stoked, others not so much. The others are complete disasters. BUT in it all is some kind of beautiful because we learn, we grow & we move forwards.
To be told this is the latest 'fashion' for kids to get these diagnoses really does nothing more than push us backwards. Yes we have a larger number being diagnosed now but we are learning more, kids who were once just classed as unruly or strange now as adults understand where they fit so to speak which has in turn helped more understandings of ASD. People seem to forget that these kids grow up. They don't just grow out of it but they do learn how to cope better & the thing is being given tools as younger children does mean they cope better. This is something you make go away it is within the brain makeup.
And no how I parent won't change that.
YES I can do things to make things easier all around like manage diets, use various ways of parenting that the boys can understand & react positively to but none of that cures anything & as I have said I don't want to cure them. They are perfect just the way they are, yes they need guidance like ANY child but just because they are wired a little differently, react to various things differently to you or your kids doesn't mean there is anything wrong with them.
It goes back to the days when it was assumed ASD kids came from 'Refridgerator Mothers' because naturally it was our faults that a child was non-responsive & lacked eye contact amongst other traits. There is so much more to ASD that just that. It would be easily solved if it were. However you then would have a world missing a hell of a lot of amazing people ... Einstein & Temple Grandin to name two.
The thing many don't seem to understand is that we are ALL Autistic in our own ways it's what makes something a Disorder than is the difference. What makes life a little bit harder for many & how exactly does a world where people think a little differently or even act a little differently affect them ?
Is it bad that it may create such a change in society we actually start grasping that INCLUSION is a must overall. For EVERYONE no matter their 'disability' or 'special need'. That we are all different so we shouldn't even be looking at it being an issue whether someone has a diagnosis or not.
I am hoping for the biggest change in Education, our schools desperately need to change & it's sad that they have barely done so in all these years.
Not everyone will be an academic, yet that is how we teach. Many need to move, whether they be by dancing or sport or simply some type of activity to help them focus yet we make them sit down. be quiet. conform. Not everyone can perform in tests yet they mean very little for the big wide world.
I agree that many probably don't need a label, possibly even my own because at the end of the day it changes nothing about who they are. They are my sons, yes we struggle with some challenges but I am learning to understand them & accept my own quirky NT ways are not suitable :D It doesn't change the person who will next judge me & my parenting when in the supermarket as G starts to growl & hiss then bites me so he can run. It doesn't change the teacher who scoffs at the diagnosis & says that they need to just sit there & do their work & stop stuffing around. It doesn't even change those around us who even question whether I am doing the right thing day in day out. Heck I even wonder it myself !
The thing it should be helping is a greater understanding. Yet all it is doing is creating a larger separation.
Now I just hope all that makes sense ....
Bryce Courtenay I am not ... Stephanie Myer possibly. I kid. Maybe :P
Light It Up Blue was in April & April was also the month of Autism Awareness.
The thing is I am starting to think we are going backwards on a lot of things rather than moving forwards.
To me it seems to have become something people just roll their eyes over or make comments that are quite ignorant. Not necessarily because they want to be either but more so because they assume everything they see or hear in a lot of media hype etc. Double edged sword really. The media is the best way to get awareness out there yet it can also bite you.
Oh & can I also point out I don't mean awareness as in " QUICK ! Find a cure ". Nope. Definitely not into that. I am talking about awareness on a level that people start to see that differences whether it be because of sensory issues or the flappy happy kid are just as normal as the kid in a wheelchair, the kid with the hearing aids because ALL of those differences are OK. They are all within normal.
The thing is & I am hearing it more & more is the " Oh yes, THOSE kids. The ones the parents just don't want to parent. They just need a good smack " or " Yeah ASD has become the 'IT' diagnosis like ADHD was a few years ago. It's so easy to get the diagnosis that the parents use it to explain everything they have done wrong ". Although there can be those who think you are almost a god because ' I could never do your job ' or seem to think you have the patience of a saint etc. We've all said it to someone at some stage admittedly.
Sooo ummm yeah.
Ummm no.
It comes from so many who are ignorant of the processes involved, the soul searching parents go through & what ends up being something that while yes opens doors to access various therapies & funding can actually see other doors slam as parents around you start judging you. Funnily enough even more so than they already were because it seems something we do so brilliantly in the first place.
Even for those who have what can be labelled at NT kids ( Neuro-Typical ) we are judging them from the get go or the very least judging the child.
Do they sleep well ?
Are they keeping up with milestones ?
Are they a happy baby ?
I mean OK they are relevant to a point however really why do perfect strangers feel it necessary to ask you in the Supermarket whether your baby sleeps well ? I mean aren't there like a million other questions to ask other than that ? Or even just a statement such as " What a sweet baby " would suffice yet from the moment we venture out with our new wee bundle we are being almost bombarded with advice.
I could go into my ranting about how many will be bagging your choices of breast versus bottle, telling you to make baby cry it out because otherwise they will learn bad habits which just makes my blood pressure rise so I really don't think me going off on that ranting tangent will help anyone. I just wish we were more supportive of that new mother. We are often such fragile creatures in those first few months, learning about this precious new person now in our arms we really don't need the negatives because we certainly do a bluddy good job of all of that ourselves !!
Anyways the judgement seems to grow as the child does.
How soon did they have their first MacDonalds fries, whether you are using organic only produce & hand making everything you possibly can ... Look don't get me wrong I get all judgey pants too. I am not gonna sit here & act like I don't because some things simply are foolish & some downright dangerous. There is a difference though.
I do believe we need to stop listening to a lot of the crap around & 'experts' but then lies the problem of well some of these experts are the ones who advise the 'good stuff'. So what do we do ?
Aaaaaah the joys of parenting. It's like running in circles with a pot on your head & hitting it repeatedly with a wooden spoon.
The media tend to show us those who are either exceptionally gifted or those on the severe end of the spectrum. Yet it's called a spectrum for a reason. They show us the violence which is often extreme & the reality for many of us but don't show the gentle times, the love & fun.
As a mum of two gorgeously wonderful little male peoples who happen to have ASD diagnoses it seems like a battle ground some days & yes I do also know that a lot of what is said is of my own choosing on how to react. That is not lost on me ;) It can be hard though not to get defensive. All mums are of their children & when it feels like it's not just a parenting choice being judge but the child themselves then it does create a need to defend.
I openly admit to my parenting not being perfect. Can someone who is the perfect parent please come forward so we can all
I have said things to the boys I am not proud of through frustration & anger, I have smacked when I shouldn't have, I have even pondered whether leaving them sitting out the front with a sign 'FREE to good home ' might give me my sanity back ( Please note I do realise that isn't appropriate although so very VERY tempting
To be told this is the latest 'fashion' for kids to get these diagnoses really does nothing more than push us backwards. Yes we have a larger number being diagnosed now but we are learning more, kids who were once just classed as unruly or strange now as adults understand where they fit so to speak which has in turn helped more understandings of ASD. People seem to forget that these kids grow up. They don't just grow out of it but they do learn how to cope better & the thing is being given tools as younger children does mean they cope better. This is something you make go away it is within the brain makeup.
And no how I parent won't change that.
YES I can do things to make things easier all around like manage diets, use various ways of parenting that the boys can understand & react positively to but none of that cures anything & as I have said I don't want to cure them. They are perfect just the way they are, yes they need guidance like ANY child but just because they are wired a little differently, react to various things differently to you or your kids doesn't mean there is anything wrong with them.
It goes back to the days when it was assumed ASD kids came from 'Refridgerator Mothers' because naturally it was our faults that a child was non-responsive & lacked eye contact amongst other traits. There is so much more to ASD that just that. It would be easily solved if it were. However you then would have a world missing a hell of a lot of amazing people ... Einstein & Temple Grandin to name two.
The thing many don't seem to understand is that we are ALL Autistic in our own ways it's what makes something a Disorder than is the difference. What makes life a little bit harder for many & how exactly does a world where people think a little differently or even act a little differently affect them ?
Is it bad that it may create such a change in society we actually start grasping that INCLUSION is a must overall. For EVERYONE no matter their 'disability' or 'special need'. That we are all different so we shouldn't even be looking at it being an issue whether someone has a diagnosis or not.
I am hoping for the biggest change in Education, our schools desperately need to change & it's sad that they have barely done so in all these years.
Not everyone will be an academic, yet that is how we teach. Many need to move, whether they be by dancing or sport or simply some type of activity to help them focus yet we make them sit down. be quiet. conform. Not everyone can perform in tests yet they mean very little for the big wide world.
I agree that many probably don't need a label, possibly even my own because at the end of the day it changes nothing about who they are. They are my sons, yes we struggle with some challenges but I am learning to understand them & accept my own quirky NT ways are not suitable :D It doesn't change the person who will next judge me & my parenting when in the supermarket as G starts to growl & hiss then bites me so he can run. It doesn't change the teacher who scoffs at the diagnosis & says that they need to just sit there & do their work & stop stuffing around. It doesn't even change those around us who even question whether I am doing the right thing day in day out. Heck I even wonder it myself !
The thing it should be helping is a greater understanding. Yet all it is doing is creating a larger separation.
Now I just hope all that makes sense ....
Saturday, 1 June 2013
One wish ...
We watched Harry Potter & The Order Of The Phoenix tonite.
Let's be honest here people, I cry ugly heaving sobs through these movies. Yep they get me every single time.
The boys ask more questions through them now, some quite amusing but some that are quite understanding of things I would have thought beyond them. But G tonite couldn't understand why they couldn't just cure Prof. Lupin being a werewolf. So having to explain I came up with that sadly just like life not all things can be cure & not even magic can do all we wish it could.
We talked about how Harry's Mother was what protected him, how he wished that there was a way he could bring his parents back.
We talked about how I wish my Dad was able to come back. How I wish so much he was able to be part of their world, to meet my niece & be part of hers & my nephews ( he did have time with my Dad albeit brief ). I can't even put it into words. The grief that it will never happen. The grief that he misses out on so much every single day.
Sometimes I still look for him when out. Like it is some weird mind trick that makes me believe he is just 'lost'. Not really gone, not really dead. Just not here right now.
Years on & it still bites.
So much he has missed & so much I know is yet to come.
Let's be honest here people, I cry ugly heaving sobs through these movies. Yep they get me every single time.
The boys ask more questions through them now, some quite amusing but some that are quite understanding of things I would have thought beyond them. But G tonite couldn't understand why they couldn't just cure Prof. Lupin being a werewolf. So having to explain I came up with that sadly just like life not all things can be cure & not even magic can do all we wish it could.
We talked about how Harry's Mother was what protected him, how he wished that there was a way he could bring his parents back.
We talked about how I wish my Dad was able to come back. How I wish so much he was able to be part of their world, to meet my niece & be part of hers & my nephews ( he did have time with my Dad albeit brief ). I can't even put it into words. The grief that it will never happen. The grief that he misses out on so much every single day.
Sometimes I still look for him when out. Like it is some weird mind trick that makes me believe he is just 'lost'. Not really gone, not really dead. Just not here right now.
Years on & it still bites.
So much he has missed & so much I know is yet to come.
Monday, 27 May 2013
Well howdy !
So yeah, I sorta haven't posted in a bit, ahem.
Not sure what I am gonna unload but feel like I am overwhelmed with 'stuffs' at this point & just wanna put it all down in here so I can sort through it all.
It was 12mths since G got his ASD diagnosis last week, seems like it's all flown in a haze. I was still preparing my sweet boy for school, worrying about how it would all play out & how I was gonna cope with my little munchkin being out in the big bad world, my baby no longer being at home with me.
I can safely say it hasn't gone as terrible as I thought it could but it hasn't been smooth sailing that's for sure. And if I am completely honest I know I will have big decisions to make come the end of the year.
I can however say with pride I held my shit together on his first day & he wasn't put through the traumatising event of his mother blubbering & clinging to him. Yep I got my shit together, I'm awesome ;)
G has accomplished a lot but has also regressed on various things. He is also struggling with some of his therapies & so we are changing things out again because it simply isn't working & I refuse to put him through something just because he is 'meant to'. He has started seeing the Child Psych that H sees & hopefully that will allow him to understand his feelings a bit better because we only have 2 which is happy or angry. I cannot wait for the day for him to say he is angry with me because he is frustrated due to x, y &/ or z ... It shall be momentous !
G has had such a struggle from the get go & please don't get me wrong his struggles compared to others are minute. Even laughable I would say. But for him they have been big enough.
We had such an amazing birth. Seriously after the horrific start H & I copped I can without any hesitation say how amazing it was. Yes I could have still changed things like actually staying home & having him here where I type but other than that. Amazing.
I was on a high for days, well until my milk came in & the standard 'baby blues' hit like a tonne of bricks. I'd left the hospital 24hrs after his birth with all this confidence of how awesome things were gonna be. I'd sorta faked that the feeding was working with the midwives as I refused to be prodded like a milk cow this time round.
Instead the tears came fast & furious. Tears as he screamed & screamed. Then screamed some more. It was tears as to why this little person was not wanting to feed. I realised he wasn't sucking like he should, we had to work hard on this as it seemed he was a little slow with his sucking reflex but hey that's OK right ? We can sort that out, we can push through. And somehow we did, or so I thought.
I ended up begging for help from our local clinic nurse, we had one decent one. Only on Fridays so within those first few weeks I was getting as much help as I could. It got to the point she was out of her league so we called in the Lactation Consultant who upon understanding how desperate things were came out to the house 2 days later & even though only squeezing me in & meaning to stay for an hour, instead sat with me for 3. She was fantastic. Decided I wasn't imagining what I thought was reflux & after knowing I'd taken myself off various foods I noticed were already causing grief & seeing G dehydrated & often vomitting. She advised of the Breastfeeding Assoc, book on feeding reflux babies ( my Doula had this & sent it my way !!! ), against what was normal advised a feeding routine to see if that helped settle his tummy along with not allowing him to get so stressed or worked up into a frenzy when hungry, start pumping as all of the stress was causing havoc with my milk plus off to see the g.p for a script for Motillium for me & Zantac for him.
The first g.p we saw, well he was I thought OK at first however refused the scripts said G & I could work thru it with the feeding plan the LC had advised. We had to see him weekly due to the dehydrating issues & the fact he was losing weight. After 3wks of this it was finally G's 6wk check up & I got told things amongst others that " I just needed to feed him " in response to the fact he refused, that is was my fault. That I needed to stop laying in bed to feed him of a morning as that is stupid & he doesn't need to feed for an hour *snort* Then upon having checked G over physically including his testicles & walking over to his desk to scribble in his notes & promptly asking if G was a boy or girl saw me dress G & walk out refusing to ever deal with him again.
We saw another g.p who gave us a referral to one Paed who was also of the same idea that this was my problem, I wasn't feeding him properly or that I was doing something wrong. Formula he said.
The thing was I wasn't just fighting this out because of the whole breastfeeding thing, something was wrong with my baby. I couldn't tell you what but something was wrong with him.
He was grey, I do not kid. He was a sickly grey colour, he sweated & he had this funny smell that came from his pores. He was miserable, he vomitted. all. the. time. profusely. He had the worst bowel movements I had ever come across.
This wasn't my first baby, I wasn't overreacting. Something was definitely wrong with my baby.
I resisted formula for another few weeks until it got to the point we were syringing what little breastmilk I could pump into his mouth. He wouldn't suck on a bottle, he would barely feed at the breast, he would not wake up for hours upon hours. So I kept pumping, used a line feed & topped up as needed with formula. Syringed as necessary to hope & try to get something into him.
I was this crazy heaving hot mess in the middle of the baby aisle at the supermarket pondering what formula to try next because all I wanted was a happy baby that would feed. I tried ALL of them. Yep every single formula I could get my hands on I tried. Some made the vomitting worse which was hilarious considering even the good days were so intense I thought he would actually bring his stomach up. He could easily vomit 4 to 6 foot across a room. We won't talk about what state he could leave his cot in.
We got to almost 3mths when we decided to try another g.p one who promptly advised G needed a Paed & not only referred us on but ensured we had an appt made for 2wks later. She also started him on Zantac, this made him a little happier at times but not much else changed.
I had high hopes for the Paed & again at first I thought I had faith in him, he added in another dose of Zantac so twice a day & advised to come back in 2wks & we would make a decision then. Of course 2wks did nothing so we decided to trial an elemental formula, one totally synthetic. He gave us sample tins of Neocate which was to do us over the Christmas period until we saw him again.
It worked !!!! Not completely, I mean the kid still put the Exorcist movie to shame & his bowel movements still weren't great but he would feed. He would remain alert & he FINALLY gained weight !!!!
When we got back to the Paed & advised of the success he was happy enough so wrote out a script. However it was for Elecare. The same stuff really he said, OK fair enough.
Ummm no. No it isn't.
Well OK to be fair maybe for the average kid with allergies or intolerances it possibly is because they are both elemental so are the best options for most. Not G.
We went backwards & he got worse & worse. His bowel movements became more & more darker, almost black & he would even pass blood. His nappy area was not coping with the acid in them nor the amount he was producing, it was not uncommon for me to change him 20 times before lunch. He was forming ulcers.
The Paed stated he just needed an increase in Zantac. OK so we tried that. Nope not working.
" Well then you are obviously doing something wrong " ... Aaaaah so here we are again. Yes me, the mother. What would I know. Must be me huh ! Try solids, he finally advised. He is 6mths so that will help & against every little voice that yelled " Not a good idea Ally !!!! " I did it.
He was violently ill for hours. Just on sweet potato.
The thing was these doctors had worn me down, I was such a wreck after 6mths of seeking help I did actually start to think this was all my fault. I was screwing up somewhere obviously. Maybe I was making him sick ???
That first week of March saw one of my good friends stand beside me as we sat in the Paeds office again, I'd asked for support because the boys dad was working & I couldn't handle being spoken to like I had previously one more time. We'd seen a g.p she knew very well who took less than 5mins before he called him to advised he must see G that day no questions.
I advised of the latest, he rolled his eyes. I knew this was not going to end well.
I could tell my friend was seething with anger especially as this Paed sat advising me there was " NO WAY, don't be ridiculous " what I was saying could not be true because it's impossible. Ummm sorry dude it was & is possible !!
I burst into tears & became quite angry with him. This seemed to get his attention a little, but in reality all he did was try to pat me on the head like a little girl which made me almost want to admit failure. He advised how " mothers like me often just need to accept their baby is difficult & that he was writing this letter for us to go into hospital so that I could keep it nearby so that when those bad nites hit I could see that & know all would be OK " WHAT. THE. FUCK dude ???? Cause ya see that letter would get me through the fact I was lucky to get G to sleep at nite after changing his nappy for the 10th time & he was crying hysterically in pain, I was lucky to sleep 2hrs on a good nite, I was not coping with the fact my son would spew litres every day & his entire nappy area was COVERED in ulcers & he would sob at me. I kinda needed a little more than a letter.
The letter luckily became a weapon a mere week later.
My gorgeous friend hugged me as we left & was already on the phone to the Paed Gastro she knew trying to make us an appt. It was early March yet we couldn't get in before September. I was at a loss. She pushed for us to be on the emergency list but that could still be a few months. I tried to cling to that. We went home & re-grouped. It at least gave me a little bit of light. The following week I remember calling her at 10pm in tears yet again " what do I do, I can't let him go through this anymore ??? Should I try presenting at Syd Kids & see what happens ??? ". She urged me to do so.
So early on the Fri morning we fronted up at Syd Kids.
We of course weren't an emergency so we had to wait a bit. We had quite a few around us through that period & we just waited. We finally had our turn & I had taken in a diary I had been keeping of when & how much G was feeding, times he vomitted & dirtied his nappies plus we had two while we were there for her to view. She gagged. Heh. I admit I saw that as a good sign, surely if even a Paed Junior gagged & seemed horrified then this was good yes ? She read the letter the 'Paed' as I shall now call him wrote & asked whether he meant Syd Kids. I played dumb, I knew it was for our local. She wanted to see him feed which he was due for & he took 10mls. Upon weighing him he had lost weight again so she asked if we could just sit back out in the waiting room until she could work out what the head Paed wanted to do.
I have to admit there was another sneaky aspect of our choice of days to go into Syd Kids, not only was the letter being used to our advantage but it was Good Friday. I knew that meant she wouldn't have been able to speak with this 'Paed'. My aim was to at least get the Paed Gastro to bump us up, if I could get some thoughts until maybe him squeezing us in, in say another month to help us. My job was done.
Little did I know that this Paed Junior & the head Paed were so worried they called the Paed Gastro on his mobile !!!! This was when the whirlwind started !!!!
We were spoken to advising that G would be admitted under Dr Jackson & that he wasn't able to see him today but had instead set down a list of all the things that G would require.
Ummmm .... Errrrrrrr
First things were G was going to need an NG tube ...
OOOOOOOohhhh I wanted to run like the wind Bullseye ... Oh yes I just put a Toy Story line in there, oh yes I did !!!
My mouth dropped, cause yanno they were for sick babies ... Junior just smiled & said " Yes cause your baby is sick ". OH. My heart sank.
Had I really been right all this time & no one would listen ???
I still remember that being done like it was yesterday. G is a breath holder & wouldn't swallow plus all the pain in his oesphophagus meant it was excrutiating for him. I nearly hyperventilated through it all because I couldn't stop sobbing over my baby screaming & crying while they shoved a tube down his nose into his throat. I knew it was needed but gosh I truly never knew the meaning of Mama Bear until that moment cause when I grabbed him back into my arms I refused to let go. He cried for 2hrs. His Dad tried to take him to give me a break as I walked, paced the waiting room while we waited on our room. I growled & I quite possible even snarled to back away. Mama Bear had awoken & heaven help anyone from here on in who didn't hear me.
We finally got a room up on the Gastro Ward & put in the high dependency area. The next thing were monitors attached & what I learnt was a milk pump set up. I was advised of the tests they were going to run & why along with having Dr Jackson's Junior care for us while it was the holidays.
The first nite was weird, all such a surreal feeling ( to be honest the entire time we were there was the same, which was 2wks ) I waited to be told " we are sending you home " even as morning came I waited. Instead Dr Jackson came in himself on the Sunday & spoke with me, he actually listened which of course made me burst into tears of joy having a doctor listen but also list off various issues we'd been having because he knew it was real & knew this wasn't me ' being ridiculous '.
We were being advised it was probably a combination of things & we were going to get to the bottom of it all.
G freaked everyone out with his temperatures, he can spike some doozies ! 42 quite happily but also then plummet down around 16 for a few days which they worked out was because he was dehydrating again. We went onto Neocate which was pumped thru the NGT via the pump at small amounts every hour. He started to brighten. We started on some heavier doses of Zantac along with Losec this saw the vomitting stop while the tube was in. He was also put on Movicol for his bowel which took a lot longer to get under control along with the ulcers. Things were far from perfect but we started seeing a massive shining light & my baby really started smiling. Happy smiles.
Even in hospital on a pump he managed to lose weight, I think it was for attention by this point :P
So he had extra calories introduced to help boost him back up. We had plans from everyone it seemed.
I did know that I had to get him off the NGT, something I wonder today if I did too early but he still hated feeding & I worried that he would depend on it. As we found in later hospital trips where it was almost a joy for him to know he'd get one *eye twitch* But we did it ! After being prepared to use the pump & 'trained' so that we'd go home with it we did leave hospital without it. We trialled solids while in hospital also to much the same reaction so advised not to trial again until the week before we saw Dr Jackson again. We had monthly appts for some time trying to settle things for G & various trips to the doctors & hospital.
We found a decent Paed by the way ... Cannot sing his praises highly enough either. Dr Dunstan is fantastic.
G was diagnosed as dairy & soy protein intolerant as well as lactose intolerant, failure to thrive ( that is always such a winner to hear ! ), severe GORD ( Gastro-Osophageal Reflux Disease ) & Allergic Colitis. We also talked about FPIES ( Food Protein-Induced Enterocolitis Syndrome ) but that is a hard one to get confirmed due to it being such an unknown & there is no way to test for it at this point but Dr Jackson was fairly confident that was what triggered a lot of his problems & in many ways spoke for a lot of the above diagnoses however not all. So all we could do was manage by keeping the bad stuff out & hoping the vomitting would stop as he grew older.
For the most part it has, we still have GORD present but with a strict diet a lot of it is managed well, his bowel is still not so great. He doesn't often feel a sensation of needing to go so toilet training was oh so awesome ! We are currently working out the next plan of action for him.
FPIES can be quite scary as it isn't just feeling unwell. It can be life threatening.
This site here speaks of FPIES : http://www.kidswithfoodallergies.org/resourcespre.php?id=99
And this video here will give you some idea of what it's like **** Please note if you have a weak stomach you may not enjoy it for obvious reasons **** : http://www.youtube.com/watch?v=24nHsxopOyw
Sadly that is what a lot of parents have to do to get a doctors attention, give the child food & let them have their reaction in the doctors office.
Basically the body goes into shock which is what G had been doing. He was virtually comatose a lot of the time.
Anyways for some reason I just wanted to get that out !
Not sure what I am gonna unload but feel like I am overwhelmed with 'stuffs' at this point & just wanna put it all down in here so I can sort through it all.
It was 12mths since G got his ASD diagnosis last week, seems like it's all flown in a haze. I was still preparing my sweet boy for school, worrying about how it would all play out & how I was gonna cope with my little munchkin being out in the big bad world, my baby no longer being at home with me.
I can safely say it hasn't gone as terrible as I thought it could but it hasn't been smooth sailing that's for sure. And if I am completely honest I know I will have big decisions to make come the end of the year.
I can however say with pride I held my shit together on his first day & he wasn't put through the traumatising event of his mother blubbering & clinging to him. Yep I got my shit together, I'm awesome ;)
G has accomplished a lot but has also regressed on various things. He is also struggling with some of his therapies & so we are changing things out again because it simply isn't working & I refuse to put him through something just because he is 'meant to'. He has started seeing the Child Psych that H sees & hopefully that will allow him to understand his feelings a bit better because we only have 2 which is happy or angry. I cannot wait for the day for him to say he is angry with me because he is frustrated due to x, y &/ or z ... It shall be momentous !
G has had such a struggle from the get go & please don't get me wrong his struggles compared to others are minute. Even laughable I would say. But for him they have been big enough.
We had such an amazing birth. Seriously after the horrific start H & I copped I can without any hesitation say how amazing it was. Yes I could have still changed things like actually staying home & having him here where I type but other than that. Amazing.
I was on a high for days, well until my milk came in & the standard 'baby blues' hit like a tonne of bricks. I'd left the hospital 24hrs after his birth with all this confidence of how awesome things were gonna be. I'd sorta faked that the feeding was working with the midwives as I refused to be prodded like a milk cow this time round.
Instead the tears came fast & furious. Tears as he screamed & screamed. Then screamed some more. It was tears as to why this little person was not wanting to feed. I realised he wasn't sucking like he should, we had to work hard on this as it seemed he was a little slow with his sucking reflex but hey that's OK right ? We can sort that out, we can push through. And somehow we did, or so I thought.
I ended up begging for help from our local clinic nurse, we had one decent one. Only on Fridays so within those first few weeks I was getting as much help as I could. It got to the point she was out of her league so we called in the Lactation Consultant who upon understanding how desperate things were came out to the house 2 days later & even though only squeezing me in & meaning to stay for an hour, instead sat with me for 3. She was fantastic. Decided I wasn't imagining what I thought was reflux & after knowing I'd taken myself off various foods I noticed were already causing grief & seeing G dehydrated & often vomitting. She advised of the Breastfeeding Assoc, book on feeding reflux babies ( my Doula had this & sent it my way !!! ), against what was normal advised a feeding routine to see if that helped settle his tummy along with not allowing him to get so stressed or worked up into a frenzy when hungry, start pumping as all of the stress was causing havoc with my milk plus off to see the g.p for a script for Motillium for me & Zantac for him.
The first g.p we saw, well he was I thought OK at first however refused the scripts said G & I could work thru it with the feeding plan the LC had advised. We had to see him weekly due to the dehydrating issues & the fact he was losing weight. After 3wks of this it was finally G's 6wk check up & I got told things amongst others that " I just needed to feed him " in response to the fact he refused, that is was my fault. That I needed to stop laying in bed to feed him of a morning as that is stupid & he doesn't need to feed for an hour *snort* Then upon having checked G over physically including his testicles & walking over to his desk to scribble in his notes & promptly asking if G was a boy or girl saw me dress G & walk out refusing to ever deal with him again.
We saw another g.p who gave us a referral to one Paed who was also of the same idea that this was my problem, I wasn't feeding him properly or that I was doing something wrong. Formula he said.
The thing was I wasn't just fighting this out because of the whole breastfeeding thing, something was wrong with my baby. I couldn't tell you what but something was wrong with him.
He was grey, I do not kid. He was a sickly grey colour, he sweated & he had this funny smell that came from his pores. He was miserable, he vomitted. all. the. time. profusely. He had the worst bowel movements I had ever come across.
This wasn't my first baby, I wasn't overreacting. Something was definitely wrong with my baby.
I resisted formula for another few weeks until it got to the point we were syringing what little breastmilk I could pump into his mouth. He wouldn't suck on a bottle, he would barely feed at the breast, he would not wake up for hours upon hours. So I kept pumping, used a line feed & topped up as needed with formula. Syringed as necessary to hope & try to get something into him.
I was this crazy heaving hot mess in the middle of the baby aisle at the supermarket pondering what formula to try next because all I wanted was a happy baby that would feed. I tried ALL of them. Yep every single formula I could get my hands on I tried. Some made the vomitting worse which was hilarious considering even the good days were so intense I thought he would actually bring his stomach up. He could easily vomit 4 to 6 foot across a room. We won't talk about what state he could leave his cot in.
We got to almost 3mths when we decided to try another g.p one who promptly advised G needed a Paed & not only referred us on but ensured we had an appt made for 2wks later. She also started him on Zantac, this made him a little happier at times but not much else changed.
I had high hopes for the Paed & again at first I thought I had faith in him, he added in another dose of Zantac so twice a day & advised to come back in 2wks & we would make a decision then. Of course 2wks did nothing so we decided to trial an elemental formula, one totally synthetic. He gave us sample tins of Neocate which was to do us over the Christmas period until we saw him again.
It worked !!!! Not completely, I mean the kid still put the Exorcist movie to shame & his bowel movements still weren't great but he would feed. He would remain alert & he FINALLY gained weight !!!!
When we got back to the Paed & advised of the success he was happy enough so wrote out a script. However it was for Elecare. The same stuff really he said, OK fair enough.
Ummm no. No it isn't.
Well OK to be fair maybe for the average kid with allergies or intolerances it possibly is because they are both elemental so are the best options for most. Not G.
We went backwards & he got worse & worse. His bowel movements became more & more darker, almost black & he would even pass blood. His nappy area was not coping with the acid in them nor the amount he was producing, it was not uncommon for me to change him 20 times before lunch. He was forming ulcers.
The Paed stated he just needed an increase in Zantac. OK so we tried that. Nope not working.
" Well then you are obviously doing something wrong " ... Aaaaah so here we are again. Yes me, the mother. What would I know. Must be me huh ! Try solids, he finally advised. He is 6mths so that will help & against every little voice that yelled " Not a good idea Ally !!!! " I did it.
He was violently ill for hours. Just on sweet potato.
The thing was these doctors had worn me down, I was such a wreck after 6mths of seeking help I did actually start to think this was all my fault. I was screwing up somewhere obviously. Maybe I was making him sick ???
That first week of March saw one of my good friends stand beside me as we sat in the Paeds office again, I'd asked for support because the boys dad was working & I couldn't handle being spoken to like I had previously one more time. We'd seen a g.p she knew very well who took less than 5mins before he called him to advised he must see G that day no questions.
I advised of the latest, he rolled his eyes. I knew this was not going to end well.
I could tell my friend was seething with anger especially as this Paed sat advising me there was " NO WAY, don't be ridiculous " what I was saying could not be true because it's impossible. Ummm sorry dude it was & is possible !!
I burst into tears & became quite angry with him. This seemed to get his attention a little, but in reality all he did was try to pat me on the head like a little girl which made me almost want to admit failure. He advised how " mothers like me often just need to accept their baby is difficult & that he was writing this letter for us to go into hospital so that I could keep it nearby so that when those bad nites hit I could see that & know all would be OK " WHAT. THE. FUCK dude ???? Cause ya see that letter would get me through the fact I was lucky to get G to sleep at nite after changing his nappy for the 10th time & he was crying hysterically in pain, I was lucky to sleep 2hrs on a good nite, I was not coping with the fact my son would spew litres every day & his entire nappy area was COVERED in ulcers & he would sob at me. I kinda needed a little more than a letter.
The letter luckily became a weapon a mere week later.
My gorgeous friend hugged me as we left & was already on the phone to the Paed Gastro she knew trying to make us an appt. It was early March yet we couldn't get in before September. I was at a loss. She pushed for us to be on the emergency list but that could still be a few months. I tried to cling to that. We went home & re-grouped. It at least gave me a little bit of light. The following week I remember calling her at 10pm in tears yet again " what do I do, I can't let him go through this anymore ??? Should I try presenting at Syd Kids & see what happens ??? ". She urged me to do so.
So early on the Fri morning we fronted up at Syd Kids.
We of course weren't an emergency so we had to wait a bit. We had quite a few around us through that period & we just waited. We finally had our turn & I had taken in a diary I had been keeping of when & how much G was feeding, times he vomitted & dirtied his nappies plus we had two while we were there for her to view. She gagged. Heh. I admit I saw that as a good sign, surely if even a Paed Junior gagged & seemed horrified then this was good yes ? She read the letter the 'Paed' as I shall now call him wrote & asked whether he meant Syd Kids. I played dumb, I knew it was for our local. She wanted to see him feed which he was due for & he took 10mls. Upon weighing him he had lost weight again so she asked if we could just sit back out in the waiting room until she could work out what the head Paed wanted to do.
I have to admit there was another sneaky aspect of our choice of days to go into Syd Kids, not only was the letter being used to our advantage but it was Good Friday. I knew that meant she wouldn't have been able to speak with this 'Paed'. My aim was to at least get the Paed Gastro to bump us up, if I could get some thoughts until maybe him squeezing us in, in say another month to help us. My job was done.
Little did I know that this Paed Junior & the head Paed were so worried they called the Paed Gastro on his mobile !!!! This was when the whirlwind started !!!!
We were spoken to advising that G would be admitted under Dr Jackson & that he wasn't able to see him today but had instead set down a list of all the things that G would require.
Ummmm .... Errrrrrrr
First things were G was going to need an NG tube ...
OOOOOOOohhhh I wanted to run like the wind Bullseye ... Oh yes I just put a Toy Story line in there, oh yes I did !!!
My mouth dropped, cause yanno they were for sick babies ... Junior just smiled & said " Yes cause your baby is sick ". OH. My heart sank.
Had I really been right all this time & no one would listen ???
I still remember that being done like it was yesterday. G is a breath holder & wouldn't swallow plus all the pain in his oesphophagus meant it was excrutiating for him. I nearly hyperventilated through it all because I couldn't stop sobbing over my baby screaming & crying while they shoved a tube down his nose into his throat. I knew it was needed but gosh I truly never knew the meaning of Mama Bear until that moment cause when I grabbed him back into my arms I refused to let go. He cried for 2hrs. His Dad tried to take him to give me a break as I walked, paced the waiting room while we waited on our room. I growled & I quite possible even snarled to back away. Mama Bear had awoken & heaven help anyone from here on in who didn't hear me.
We finally got a room up on the Gastro Ward & put in the high dependency area. The next thing were monitors attached & what I learnt was a milk pump set up. I was advised of the tests they were going to run & why along with having Dr Jackson's Junior care for us while it was the holidays.
The first nite was weird, all such a surreal feeling ( to be honest the entire time we were there was the same, which was 2wks ) I waited to be told " we are sending you home " even as morning came I waited. Instead Dr Jackson came in himself on the Sunday & spoke with me, he actually listened which of course made me burst into tears of joy having a doctor listen but also list off various issues we'd been having because he knew it was real & knew this wasn't me ' being ridiculous '.
We were being advised it was probably a combination of things & we were going to get to the bottom of it all.
G freaked everyone out with his temperatures, he can spike some doozies ! 42 quite happily but also then plummet down around 16 for a few days which they worked out was because he was dehydrating again. We went onto Neocate which was pumped thru the NGT via the pump at small amounts every hour. He started to brighten. We started on some heavier doses of Zantac along with Losec this saw the vomitting stop while the tube was in. He was also put on Movicol for his bowel which took a lot longer to get under control along with the ulcers. Things were far from perfect but we started seeing a massive shining light & my baby really started smiling. Happy smiles.
Even in hospital on a pump he managed to lose weight, I think it was for attention by this point :P
So he had extra calories introduced to help boost him back up. We had plans from everyone it seemed.
I did know that I had to get him off the NGT, something I wonder today if I did too early but he still hated feeding & I worried that he would depend on it. As we found in later hospital trips where it was almost a joy for him to know he'd get one *eye twitch* But we did it ! After being prepared to use the pump & 'trained' so that we'd go home with it we did leave hospital without it. We trialled solids while in hospital also to much the same reaction so advised not to trial again until the week before we saw Dr Jackson again. We had monthly appts for some time trying to settle things for G & various trips to the doctors & hospital.
We found a decent Paed by the way ... Cannot sing his praises highly enough either. Dr Dunstan is fantastic.
G was diagnosed as dairy & soy protein intolerant as well as lactose intolerant, failure to thrive ( that is always such a winner to hear ! ), severe GORD ( Gastro-Osophageal Reflux Disease ) & Allergic Colitis. We also talked about FPIES ( Food Protein-Induced Enterocolitis Syndrome ) but that is a hard one to get confirmed due to it being such an unknown & there is no way to test for it at this point but Dr Jackson was fairly confident that was what triggered a lot of his problems & in many ways spoke for a lot of the above diagnoses however not all. So all we could do was manage by keeping the bad stuff out & hoping the vomitting would stop as he grew older.
For the most part it has, we still have GORD present but with a strict diet a lot of it is managed well, his bowel is still not so great. He doesn't often feel a sensation of needing to go so toilet training was oh so awesome ! We are currently working out the next plan of action for him.
FPIES can be quite scary as it isn't just feeling unwell. It can be life threatening.
This site here speaks of FPIES : http://www.kidswithfoodallergies.org/resourcespre.php?id=99
And this video here will give you some idea of what it's like **** Please note if you have a weak stomach you may not enjoy it for obvious reasons **** : http://www.youtube.com/watch?v=24nHsxopOyw
Sadly that is what a lot of parents have to do to get a doctors attention, give the child food & let them have their reaction in the doctors office.
Basically the body goes into shock which is what G had been doing. He was virtually comatose a lot of the time.
Anyways for some reason I just wanted to get that out !
Wednesday, 5 September 2012
My Boys - Part 2
My baby, Master G, Fiffy as you called yourself back when or as you are now known Tiger-Kanga,
Oh how you are one of a kind !
You came into this world in such a way you made the world around me revolve. Your birth healed an immense pain & sadness & made me realise how strong I truly was. When I pulled you up into my arms all I could see was the most wonderous being ever. I had helped create another perfect being.
I rode a fantastic high & boy was I glad I did with all the feeding problems, the vomitting & the bowel movements that required hazmat suits. Sadly it all came crashing down when the feeding never got better nor did anything else, they infact got worse. I felt like I was fighting an uphill battle every day to feed you or to get any doctors to listen to me that something was wrong. Apparently I just had to feed you. Umm yeah OK.
I really do not know how I got through those months but I also know it was through the love of many around me that helped. Some nearby while others interstate, even with their own sick kids helping me through the endless days & the traumatic nites. I just wished for a doctor to listen.
That wish finally came true when you were taken into Sydney Kids admitted under Dr Jackson who was amazing & I can never be grateful enough for. He actually listened & never once dismissed me. We finally had help & while it was tough going we made big changes which helped. I was told we would go home with you on a feeding pump with an NG tube ( Nasal Gastric tube to feed through ) but I stood my ground refusing & while you were never the perfect feeder they accepted I didn't want it. Not because they are bad or anything else but because I knew deep down if you stayed on that you would never feed orally & I stand by that especially now with how you would rather starve than eat some days. There have been times when we have had to return to hospital, to deal with the tubes again undergo more testing & probably will continue for some time yet but that was a turning point for us. Getting some answers or at least a plan & knowing where to go.
After that initial 15 day stay at 6mths you came home a different baby, you had colour & would smile more than anything else. You became a cuddly little man & yep you certainly were & still are a mama's boy.
You struggled through a lot of your milestones, no biggie every child is different. Your reflexes weren't what they should be but again no biggie not every kid can be perfection. You are a cluey kid, terribly cheeky & what I call my firecracker so pfffft to that stupid blue book.
You often love to spin & swing. Can get a little rough in the playground as you deem the swings as yours, you also decide biting works well for you & I am tempted to buy you a collar at one stage for the amount of times you have come at me or Mr McBoof in sheer anger or frustration. You hate using your words, you prefer to growl. That works well. You hate barefeet & love to walk around without pants. Yep there a number of stories in that for your 21st.
You will only eat crunchy foods, you will scream if the bath water is warm cause it has to be tepid, you peel mandarins just to sniff them & will also sniff people & lick various objects including poles, handrails, windows & some people ... Yep more 21st stories.
You are obsessed with tigers, hence the name ! But you also have a love of a lot of animals & of course dinosaurs. You love Octonauts ( love Peso the penguin especially ) & besides an obsession with In The Nite Garden it really is one of the only shows you will drop everything for. Although I do now see you wanting to be a bigger boy & more like your brother so Horrible Histories & the Deadly 60 are certainly rate by you.
Your assessment earlier this year really hit me hard, in so many ways I knew the answer but I had talked myself out of it for so long it was hard to swallow. I couldn't understand how my two gorgeous boys were so different, so amazing, so ASD. It's normal around here ;)
Nothing changed that day yet everything did.
More appointments, more therapy, more routines, new routines, new ideas, new what seemed like everything in our world yet again.
You really are my firecracker, you make me laugh every single day. There are so many things you say & do which amaze me & almost knock me over. Your frustrations in this world are so different & displayed so differently to your brother I often forget that you aren't coping, that it isn't just bratty behaviour but an inability to cope with what's going on.
I feel like I am having to re-learn everything all over again, but that's OK because I relish doing so when the two of you teaching me about the world opens my eyes in more ways than I could ever have imagined.
My sweet gorgeous boy how I am so grateful you came into our world, love you xxx
Oh how you are one of a kind !
You came into this world in such a way you made the world around me revolve. Your birth healed an immense pain & sadness & made me realise how strong I truly was. When I pulled you up into my arms all I could see was the most wonderous being ever. I had helped create another perfect being.
I rode a fantastic high & boy was I glad I did with all the feeding problems, the vomitting & the bowel movements that required hazmat suits. Sadly it all came crashing down when the feeding never got better nor did anything else, they infact got worse. I felt like I was fighting an uphill battle every day to feed you or to get any doctors to listen to me that something was wrong. Apparently I just had to feed you. Umm yeah OK.
I really do not know how I got through those months but I also know it was through the love of many around me that helped. Some nearby while others interstate, even with their own sick kids helping me through the endless days & the traumatic nites. I just wished for a doctor to listen.
That wish finally came true when you were taken into Sydney Kids admitted under Dr Jackson who was amazing & I can never be grateful enough for. He actually listened & never once dismissed me. We finally had help & while it was tough going we made big changes which helped. I was told we would go home with you on a feeding pump with an NG tube ( Nasal Gastric tube to feed through ) but I stood my ground refusing & while you were never the perfect feeder they accepted I didn't want it. Not because they are bad or anything else but because I knew deep down if you stayed on that you would never feed orally & I stand by that especially now with how you would rather starve than eat some days. There have been times when we have had to return to hospital, to deal with the tubes again undergo more testing & probably will continue for some time yet but that was a turning point for us. Getting some answers or at least a plan & knowing where to go.
After that initial 15 day stay at 6mths you came home a different baby, you had colour & would smile more than anything else. You became a cuddly little man & yep you certainly were & still are a mama's boy.
You struggled through a lot of your milestones, no biggie every child is different. Your reflexes weren't what they should be but again no biggie not every kid can be perfection. You are a cluey kid, terribly cheeky & what I call my firecracker so pfffft to that stupid blue book.
You often love to spin & swing. Can get a little rough in the playground as you deem the swings as yours, you also decide biting works well for you & I am tempted to buy you a collar at one stage for the amount of times you have come at me or Mr McBoof in sheer anger or frustration. You hate using your words, you prefer to growl. That works well. You hate barefeet & love to walk around without pants. Yep there a number of stories in that for your 21st.
You will only eat crunchy foods, you will scream if the bath water is warm cause it has to be tepid, you peel mandarins just to sniff them & will also sniff people & lick various objects including poles, handrails, windows & some people ... Yep more 21st stories.
You are obsessed with tigers, hence the name ! But you also have a love of a lot of animals & of course dinosaurs. You love Octonauts ( love Peso the penguin especially ) & besides an obsession with In The Nite Garden it really is one of the only shows you will drop everything for. Although I do now see you wanting to be a bigger boy & more like your brother so Horrible Histories & the Deadly 60 are certainly rate by you.
Your assessment earlier this year really hit me hard, in so many ways I knew the answer but I had talked myself out of it for so long it was hard to swallow. I couldn't understand how my two gorgeous boys were so different, so amazing, so ASD. It's normal around here ;)
Nothing changed that day yet everything did.
More appointments, more therapy, more routines, new routines, new ideas, new what seemed like everything in our world yet again.
You really are my firecracker, you make me laugh every single day. There are so many things you say & do which amaze me & almost knock me over. Your frustrations in this world are so different & displayed so differently to your brother I often forget that you aren't coping, that it isn't just bratty behaviour but an inability to cope with what's going on.
I feel like I am having to re-learn everything all over again, but that's OK because I relish doing so when the two of you teaching me about the world opens my eyes in more ways than I could ever have imagined.
My sweet gorgeous boy how I am so grateful you came into our world, love you xxx
Wednesday, 25 July 2012
My Boys - Part 1
I had the idea that this would be a letter to my youngest for his birthday which is in early August but got to thinking I really should be saying something for the both of them.
So here goes ...
My infuriatingly frustrating boys, my wonderfully amazing little people I actually helped create, grow then bring into this world ... Corny & all but my heart swells over the amazingness of just your being.
My eldest, my Mr McBoof,
How my world changed on so many levels the moment you finally decided to grace us with your presence. And boy oh boy did you ever take your time doing so ! 7 days overdue & after 3 days of labour, lots of stress & quite a lot of vomitting on my part. You showed me how even after such a scary moment, even when things seem so bleak that there is always a light even if small. Our first few weeks & maybe even months were a blur of my trying to grasp the whole motherhood thing & you also showing why you really didn't want to be outside of the womb. You cried. A lot. I now see this as your plea to the outside world that was far too overwhelming to slow down a little for you, that it was all too much.
You grew & while mostly a little behind motor wise you kept up with all milestones & when you started to talk, well I figured you fit into my family pretty darn well ;)
You were a bundle of energy who went from high & happy to a crying emotional wreck in light speed. You verbalised so well no one could grasp that you were such an unhappy little guy a lot of the time because you were always so eager to have someone listen to you. It started young, you spoke to people, at them. You didn't want to listen to them or hear their stories but just wanted to talk incessantly, it almost felt like being steam rolled when you got on a subject.
You became particular about things being done specific ways & the world ended if it wasn't just. right. You were obsessed with The Wiggles & what I thought was normal as hey most kids love them I now look at photos & videos & can see that they obviously gave you an input you needed at that time. You didn't laugh & dance along with them like all the other kids you either sat on your little sofa & rocked or your absolute fave thing was to get a little basket I had sit in that & make it rock while you hummed to yourself. It was so damned cute.
Your dress sense was & has always been killer although I do believe you have learned from your peers a little & don't go so wild anymore, I sorta miss it. Although at the time, those days trying to peel off your Tigger dressing gown on a 42 degree day, yeah not so fun. You were mostly found wearing that dressing gown, you also loved beanies & wore them funnily enough exactly how your Gran'da used to. This used to make me laugh but also hit my heart how you would never meet him, yet were so alike. Wildly striped shirts with checked shorts & mis-matched socks were also another common theme/ trend. You have always walked your own line. I hope that never changes.
When the meltdowns & behaviours became too much for me to handle, not because I didn't try, not because there is anything 'wrong' with you. I had started wondering whether I was the one who had something wrong with me. You were such an amazing spirit yet so damned well frustrating that I kept thinking " what am I doing wrong here ?!?!?!?! ".
A few years later & that question was answered with Aspergers/ High Functioning Autism.
Oh my gorgeous boy how you showed the stressed you deal with but oh how you showed how intelligent & amazing you are. That brain of yours will do wonderous things, I just hope with all my heart your self doubts, your depressive moods don't hold you back from seeing your true potential because outside of all of that when you really believe in yourself you soar.
Your daily struggles hit my heart too, I so wish I could take it all away. I so wish for you to be without that stress, that anxiety & constant self doubt, as a mum you never want to see your child hurt or hurting & some days I myself, feel so overwhelmed for you I have no idea what I can do to make it all go away. It's a learning process for us both & I hope more than anything that as some stage later in life we can look back on all of this & say " PHEW we got through that !!! ". I know that you will hate me for a lot of your teen years, that's OK. Well, sorta. It will hurt but teens just never like their parents ;)
Most of all that I wish, wish the most that you never change.
Never change being you, yes you drive me batty, yes I often want to bang my head against a wall & yes sometimes I wish, plead & whimper at your feet that you would be nicer to your little brother but never change because you will move mountains.
Love Mum xxx
Part 2 to come .....
So here goes ...
My infuriatingly frustrating boys, my wonderfully amazing little people I actually helped create, grow then bring into this world ... Corny & all but my heart swells over the amazingness of just your being.
My eldest, my Mr McBoof,
How my world changed on so many levels the moment you finally decided to grace us with your presence. And boy oh boy did you ever take your time doing so ! 7 days overdue & after 3 days of labour, lots of stress & quite a lot of vomitting on my part. You showed me how even after such a scary moment, even when things seem so bleak that there is always a light even if small. Our first few weeks & maybe even months were a blur of my trying to grasp the whole motherhood thing & you also showing why you really didn't want to be outside of the womb. You cried. A lot. I now see this as your plea to the outside world that was far too overwhelming to slow down a little for you, that it was all too much.
You grew & while mostly a little behind motor wise you kept up with all milestones & when you started to talk, well I figured you fit into my family pretty darn well ;)
You were a bundle of energy who went from high & happy to a crying emotional wreck in light speed. You verbalised so well no one could grasp that you were such an unhappy little guy a lot of the time because you were always so eager to have someone listen to you. It started young, you spoke to people, at them. You didn't want to listen to them or hear their stories but just wanted to talk incessantly, it almost felt like being steam rolled when you got on a subject.
You became particular about things being done specific ways & the world ended if it wasn't just. right. You were obsessed with The Wiggles & what I thought was normal as hey most kids love them I now look at photos & videos & can see that they obviously gave you an input you needed at that time. You didn't laugh & dance along with them like all the other kids you either sat on your little sofa & rocked or your absolute fave thing was to get a little basket I had sit in that & make it rock while you hummed to yourself. It was so damned cute.
Your dress sense was & has always been killer although I do believe you have learned from your peers a little & don't go so wild anymore, I sorta miss it. Although at the time, those days trying to peel off your Tigger dressing gown on a 42 degree day, yeah not so fun. You were mostly found wearing that dressing gown, you also loved beanies & wore them funnily enough exactly how your Gran'da used to. This used to make me laugh but also hit my heart how you would never meet him, yet were so alike. Wildly striped shirts with checked shorts & mis-matched socks were also another common theme/ trend. You have always walked your own line. I hope that never changes.
When the meltdowns & behaviours became too much for me to handle, not because I didn't try, not because there is anything 'wrong' with you. I had started wondering whether I was the one who had something wrong with me. You were such an amazing spirit yet so damned well frustrating that I kept thinking " what am I doing wrong here ?!?!?!?! ".
A few years later & that question was answered with Aspergers/ High Functioning Autism.
Oh my gorgeous boy how you showed the stressed you deal with but oh how you showed how intelligent & amazing you are. That brain of yours will do wonderous things, I just hope with all my heart your self doubts, your depressive moods don't hold you back from seeing your true potential because outside of all of that when you really believe in yourself you soar.
Your daily struggles hit my heart too, I so wish I could take it all away. I so wish for you to be without that stress, that anxiety & constant self doubt, as a mum you never want to see your child hurt or hurting & some days I myself, feel so overwhelmed for you I have no idea what I can do to make it all go away. It's a learning process for us both & I hope more than anything that as some stage later in life we can look back on all of this & say " PHEW we got through that !!! ". I know that you will hate me for a lot of your teen years, that's OK. Well, sorta. It will hurt but teens just never like their parents ;)
Most of all that I wish, wish the most that you never change.
Never change being you, yes you drive me batty, yes I often want to bang my head against a wall & yes sometimes I wish, plead & whimper at your feet that you would be nicer to your little brother but never change because you will move mountains.
Love Mum xxx
Part 2 to come .....
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