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
Wednesday, 5 September 2012
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 .....
Monday, 11 June 2012
Anger
It's such a massive emotion.
It is often a burning, seething rage making us want to lash out but it is only the cover for so much that lies beneath ...
Fear & sorrow are mine.
Don't get me wrong a diagnosis isn't the end of the world & it isn't such that life is so terribly depressing however there is a sorrow. A knowing that you have 'lost' something, the supposed idealistic view of a normal child. I don't want to label my boys, I don't want to make them & their being all about their diagnosis but the reality is that the world within this bubble, their world is different & is outside the norm. It means daily routines & rituals to keep the calm, it means remembering things like spare batteries so that the new toothbrushes are always ready to go so that something as simple as brushing teeth doesn't turn into an episode of Road Runner & Coyote meets wailing banshee which then becomes Mama needs vodka at 8am. Well actually maybe not. I might spill the vodka :P
For the first time in our SN Playgroup I had to introduce myself differently & it was upsetting. More than I thought it would be. I had always been " Hi I'm Ally & I have Boof who is 6yrs ( now 7yrs ) with an ASD diagnosis & G who is 3yrs ( now 4yrs ) who is NT but feral " LOL. Now both have the diagnosis it feels like I have been ripped off yet that is too funny when really what has changed ? What have I had taken from me except the view of society that my boys are not within normal.
The fear is one of the unknown, I mean as parents we all face the fears of parenting itself but then throw in a few added extras like the greater chances of bullying, abuse, drug & alcohol use/ abuse & suicide which makes you start to wonder ... Errrrr whose idea was this anyways ?!?!?!?
It's about getting my head around it all that maybe this isn't what I planned for but this is it.
This here, is it.
Anger is not where I want to be, it isn't healthy & I refuse to allow it & any bitterness to swallow me up as I said in a previous post it isn't who I want to be. I want to move forward, I want to enjoy every single moment with the gorgeous beings I helped grow & that I now help nuture. Sure I am gonna mess up & sure I am going to continue to do so, but I also know that they themselves help me grow & learn all the while ... Let's just hope the therapy bills as teens aren't too much more due to it ;)
It is often a burning, seething rage making us want to lash out but it is only the cover for so much that lies beneath ...
Fear & sorrow are mine.
Don't get me wrong a diagnosis isn't the end of the world & it isn't such that life is so terribly depressing however there is a sorrow. A knowing that you have 'lost' something, the supposed idealistic view of a normal child. I don't want to label my boys, I don't want to make them & their being all about their diagnosis but the reality is that the world within this bubble, their world is different & is outside the norm. It means daily routines & rituals to keep the calm, it means remembering things like spare batteries so that the new toothbrushes are always ready to go so that something as simple as brushing teeth doesn't turn into an episode of Road Runner & Coyote meets wailing banshee which then becomes Mama needs vodka at 8am. Well actually maybe not. I might spill the vodka :P
For the first time in our SN Playgroup I had to introduce myself differently & it was upsetting. More than I thought it would be. I had always been " Hi I'm Ally & I have Boof who is 6yrs ( now 7yrs ) with an ASD diagnosis & G who is 3yrs ( now 4yrs ) who is NT but feral " LOL. Now both have the diagnosis it feels like I have been ripped off yet that is too funny when really what has changed ? What have I had taken from me except the view of society that my boys are not within normal.
The fear is one of the unknown, I mean as parents we all face the fears of parenting itself but then throw in a few added extras like the greater chances of bullying, abuse, drug & alcohol use/ abuse & suicide which makes you start to wonder ... Errrrr whose idea was this anyways ?!?!?!?
It's about getting my head around it all that maybe this isn't what I planned for but this is it.
This here, is it.
Anger is not where I want to be, it isn't healthy & I refuse to allow it & any bitterness to swallow me up as I said in a previous post it isn't who I want to be. I want to move forward, I want to enjoy every single moment with the gorgeous beings I helped grow & that I now help nuture. Sure I am gonna mess up & sure I am going to continue to do so, but I also know that they themselves help me grow & learn all the while ... Let's just hope the therapy bills as teens aren't too much more due to it ;)
Wednesday, 30 May 2012
Hiding
Been quite some time since I updated.
I admit to having been hiding, trying to find an ostrich hole to stick my head in the sand but mostly I think it was about survival & not wanting to have to accept where the road was leading.
Late last year I was getting more comments made about some of the behaviours my youngest was showing, his reactions & how sometimes his speech was difficult to understand. I admit I was starting to worry but to actually have those concerns brought to me. Sorta threw me a little. Well actually threw me a lot.
I couldn't possibly have two boys on the Spectrum. Surely ?
So while our Paed put us on the CATS waiting list & we waited, we have been seeing OT & Physio through the public sector ( still on the waiting list for Speech ) & implementing some changes at home. This last month we also started a School Readiness Program to help the transition for school next year ... Eeeep when did that happen ?!?!?!?
I couldn't possibly have two boys on the Spectrum. Surely ?
So while our Paed put us on the CATS waiting list & we waited, we have been seeing OT & Physio through the public sector ( still on the waiting list for Speech ) & implementing some changes at home. This last month we also started a School Readiness Program to help the transition for school next year ... Eeeep when did that happen ?!?!?!?
The last two months have been especially hard, so many emotions of worrying is he or isn't he but mostly I found myself talking myself out of the silly notion that G sat anywhere on the Spectrum.
G is hilarious. Often very defiant & hard to control but funny, sweet, loving, smart & completely gorgeous. I don't want to in this post dwell on the negatives because he is so so many things wrapped into one & he truly is more than what anyone could put down on paper.
G is hilarious. Often very defiant & hard to control but funny, sweet, loving, smart & completely gorgeous. I don't want to in this post dwell on the negatives because he is so so many things wrapped into one & he truly is more than what anyone could put down on paper.
Last Friday 25th May G had his CATS.
I thought we wasted everyones time, he was adorable, smart, witty & had everyone laughing.
G was diagnosed as Aspergers / High Functioning Autism.
My heart shattered.
Those shards caught in my throat but I swallowed them down as I chose to fight for him.
My gorgeous boy did imaginary play, he showed his awesome fine motor skills, he did an amazing job with the puzzles & various blocks they put in front of him. He drew a line & crossed it !!!! And to my complete shock & amazement he wrote a G.
I was going to fight this, I was angry !!!!
My gorgeous boy did imaginary play, he showed his awesome fine motor skills, he did an amazing job with the puzzles & various blocks they put in front of him. He drew a line & crossed it !!!! And to my complete shock & amazement he wrote a G.
I was going to fight this, I was angry !!!!
But in that moment I also had to admit defeat.
My boy has struggles, he struggles every single day, I knew that. He mostly likes to be alone, kids don't 'get him', he lashes out, he is controlling, his imaginary play isn't what it should be, he has sensory needs & more ... More than the 'average' child.
I was angry with myself, I mean I have Boof ...How could I not honestly see this ? How have I been so blind not to truly see where this was going. Angry at the world that we have 'average' & that we have to put our kids in boxes. But mostly yep, angry with myself.
Two kids on the Spectrum, it wasn't meant to be like this.
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