Joining My little Drummer Boys for Wordless Wednesday.
Showing posts with label Jack. Show all posts
Showing posts with label Jack. Show all posts
Wednesday, 31 August 2011
Sunday, 28 August 2011
Cherishing Your Cherubs Project Monday Link Up: Remember...
This is the 2nd part of Naomi from Seven Cherubs Cherishing Your Cherubs Project Link Up.
In this post we are to write about something we REMEMBER about our children. It could be their birth story/ies, or a moment you shared with each one, or a major achievement they accomplished.
I have decided to do three different forms of rememberance and chose one for each of my muskateers.
For Liam I will recount when he came home from the hospital and I was a first time mum.
For Jack it will be when he was recovering in hospital from his Open Heart Surgery.
For Evangeline it will be a moment that I found defining in regards to all three of my cherubs yesterday.
Liam
It had been ten days. Ten days of pain, fear, worry. We nearly lost you. I still don't think I fully understood that. I was in a daze.
And here we were on day 10 arriving home. I was nervous, but most of all beyond excited. I was a mum and I had my precious little bundle with me. You were so snug in my arms. Such a bubble of cuteness, all rounded and soft and smooth.
The most vivid memory I have of those first few days at home were the fact I couldn't nap, even though everyone advised me to: "Make sure you sleep when baby does". But I just couldn't. I was bursting with sheer delight. I just wanted to watch you as your chest rose and fell. As you snored, your little baby snore. My eyes were fixed on your little body, your cherubic face. I didn't want to miss a beat. I seriously had to pinch myself. My whole life I dreamed of being a mummy and here I was holding my very own babe.
You were and still are the perfect blend of your daddy and myself. Of course you have my cheeks, the ones that need their own postcode. Bulbous beyond compare. Although I think your sister can now give them a run for their money.
Your hair was as white and pure as the cliched snow. I had never seen a newborn with white as can be hair. And here you were my little Norse god.
At that point we had no idea what lay ahead of you or us. We were just intoxicated by the love we felt for you and so the past and the future didn't even factor into our mind.
Those first few days at home were magic. I am glad we did not know anything at this point. We got to enjoy you for just you Liam. There was no Cerebral Palsy, no Special Needs. Not that those are bad things, but they are extra 'things' that will always be apart of you now, just as my diabetes and my depression will always be apart of me. Baby Liam. The most beautiful baby to have ever existed.
Jack
It was day three post op. You had made such great progress after your Open Heart Surgery. Most of the tubes and wires had been removed as your recovery was steaming long. Daddy had to stay at home with your big brother Liam, whilst you and I were sleeping next to eachother in the Heart Ward.
For a 5 month old you were so placid, so very calm.
I sat next to your cot and would lean my head next to yours on the mattress.
I was exhausted, both emotionally and physically, but your relaxed demeanour soothed me, and encouraged me to let go of the stress. It was as if you were comforting me! I was the baby and you were the adult.
I dressed you in some super bright onesies. They had to have the feet cut out so a monitor could be attached to your toe, testing for heart rate, blood pressure etc. I wish I had kept at least one of them. But I did take lots of photos of you in them Jack. I took lots of photos of you and your chest. You even managed to smile for a few of these shots. What a champ.
I even made sure to take photos of your chest before your surgery, because that was going to be the last time you would be scar free.
While other children sobbed, whinged, screamed through out the ward, you just laid there as cool as a cucumber. The coolest customer. I cannot thank you enough for making the experience for me much less painful than it could've been.
Now you can say not only do you have a wicked scar, but you have the coolest attitude any human could have in that situation. You. Are. One. Cool. Dude.
Evangeline
Every morning at breakfast time I line all three of you up. Evangeline, you are in your high chair. Jack is in his booster chair. Liam is in his wheelchair.
There is a mountain of toast. A vegemite explosion. Or at least that's what appears to have happened if one was to look at the aftermath.
As we all stuff our faces I take the opportunity to perform for my captive audience. You are always the most attentive. Hanging off my every word. Your big brown eyes with eye lashes for days, study me, work their way over my face and follow my waving wildly arms and hands. You are not yet a year old. But you are already doing so much at this age. Doing more than your big brothers did at the same age.
On this particular day I started to sing "Old McDonald Had a Farm", as we do at least once a day. It seems to be everyone's favourite song in this house and I love to keep you kiddies happy, thus I will sing Old Mac until the proverbial cows come home. When it came to the line: ".. and on that farm he had a..", I looked at Liam and Jack, waiting for some sort of sound or movement. I mean I had been working on both their speech therapy using this song, so I was hopeful for a miracle response.
"DUCK!" you chimed.
My jaw dropped. I quickly picked it back up.
"Yes, good work Evy, he had a duck", I beamed. I was blown away and so proud of you. But this was the moment I knew would stick in my mind like honey, so sweet yet so messy. You see this was the moment you 'over took' your brothers. This was the moment that their 'diffability' became glaringly obvious in our sheltered little bubble of home. Yet it showed me what a clever little baby girl you are and that is what I know we will always focus on from here on in, rather than comparing where each of you were at that same age.
Each one of you are clever and amazing in your own way. And I want you to all know how proud I am of you.
In this post we are to write about something we REMEMBER about our children. It could be their birth story/ies, or a moment you shared with each one, or a major achievement they accomplished.
I have decided to do three different forms of rememberance and chose one for each of my muskateers.
For Liam I will recount when he came home from the hospital and I was a first time mum.
For Jack it will be when he was recovering in hospital from his Open Heart Surgery.
For Evangeline it will be a moment that I found defining in regards to all three of my cherubs yesterday.
Liam
It had been ten days. Ten days of pain, fear, worry. We nearly lost you. I still don't think I fully understood that. I was in a daze.
And here we were on day 10 arriving home. I was nervous, but most of all beyond excited. I was a mum and I had my precious little bundle with me. You were so snug in my arms. Such a bubble of cuteness, all rounded and soft and smooth.
The most vivid memory I have of those first few days at home were the fact I couldn't nap, even though everyone advised me to: "Make sure you sleep when baby does". But I just couldn't. I was bursting with sheer delight. I just wanted to watch you as your chest rose and fell. As you snored, your little baby snore. My eyes were fixed on your little body, your cherubic face. I didn't want to miss a beat. I seriously had to pinch myself. My whole life I dreamed of being a mummy and here I was holding my very own babe.
You were and still are the perfect blend of your daddy and myself. Of course you have my cheeks, the ones that need their own postcode. Bulbous beyond compare. Although I think your sister can now give them a run for their money.
Your hair was as white and pure as the cliched snow. I had never seen a newborn with white as can be hair. And here you were my little Norse god.
At that point we had no idea what lay ahead of you or us. We were just intoxicated by the love we felt for you and so the past and the future didn't even factor into our mind.
Those first few days at home were magic. I am glad we did not know anything at this point. We got to enjoy you for just you Liam. There was no Cerebral Palsy, no Special Needs. Not that those are bad things, but they are extra 'things' that will always be apart of you now, just as my diabetes and my depression will always be apart of me. Baby Liam. The most beautiful baby to have ever existed.
Jack
It was day three post op. You had made such great progress after your Open Heart Surgery. Most of the tubes and wires had been removed as your recovery was steaming long. Daddy had to stay at home with your big brother Liam, whilst you and I were sleeping next to eachother in the Heart Ward.
For a 5 month old you were so placid, so very calm.
I sat next to your cot and would lean my head next to yours on the mattress.
I was exhausted, both emotionally and physically, but your relaxed demeanour soothed me, and encouraged me to let go of the stress. It was as if you were comforting me! I was the baby and you were the adult.
I dressed you in some super bright onesies. They had to have the feet cut out so a monitor could be attached to your toe, testing for heart rate, blood pressure etc. I wish I had kept at least one of them. But I did take lots of photos of you in them Jack. I took lots of photos of you and your chest. You even managed to smile for a few of these shots. What a champ.
I even made sure to take photos of your chest before your surgery, because that was going to be the last time you would be scar free.
While other children sobbed, whinged, screamed through out the ward, you just laid there as cool as a cucumber. The coolest customer. I cannot thank you enough for making the experience for me much less painful than it could've been.
Now you can say not only do you have a wicked scar, but you have the coolest attitude any human could have in that situation. You. Are. One. Cool. Dude.
Evangeline
Every morning at breakfast time I line all three of you up. Evangeline, you are in your high chair. Jack is in his booster chair. Liam is in his wheelchair.
There is a mountain of toast. A vegemite explosion. Or at least that's what appears to have happened if one was to look at the aftermath.
As we all stuff our faces I take the opportunity to perform for my captive audience. You are always the most attentive. Hanging off my every word. Your big brown eyes with eye lashes for days, study me, work their way over my face and follow my waving wildly arms and hands. You are not yet a year old. But you are already doing so much at this age. Doing more than your big brothers did at the same age.
On this particular day I started to sing "Old McDonald Had a Farm", as we do at least once a day. It seems to be everyone's favourite song in this house and I love to keep you kiddies happy, thus I will sing Old Mac until the proverbial cows come home. When it came to the line: ".. and on that farm he had a..", I looked at Liam and Jack, waiting for some sort of sound or movement. I mean I had been working on both their speech therapy using this song, so I was hopeful for a miracle response.
"DUCK!" you chimed.
My jaw dropped. I quickly picked it back up.
"Yes, good work Evy, he had a duck", I beamed. I was blown away and so proud of you. But this was the moment I knew would stick in my mind like honey, so sweet yet so messy. You see this was the moment you 'over took' your brothers. This was the moment that their 'diffability' became glaringly obvious in our sheltered little bubble of home. Yet it showed me what a clever little baby girl you are and that is what I know we will always focus on from here on in, rather than comparing where each of you were at that same age.
Each one of you are clever and amazing in your own way. And I want you to all know how proud I am of you.
Monday, 15 August 2011
Middle Child Syndrome doesn't exist in our house...
My husband is a 'middle child' and so is his mother. I always worried my Mr Middle aka Jack would suffer the "Middle Child Syndrome", because I can see it does happen to some extent. The eldest gets the attention for being the first, 'paving the way' and so on. The youngest gets the attention because they are the 'baby' and are allowed to get away with murder. Then there's the middle child, who can often get somewhat forgotten about....
Of course with our eldest, Liam, having such a severe physical disability there was always that worry of focussing much more attention on Liam than his siblings. So it was something I was aware of.
My husband still suffers from it a bit. And I remember my mother in law saying "poor Jack will suffer the middle child syndrome too". My inner monologue response was: "Not if I have anything to do with it!", and on the outside I did my usual nod and smile, because I am a wuss polite.
Funny thing is, Jack had his own thoughts of: "Not if I have anything to do with it!" He went and got himself a Congenital Heart Defect, thus major attention seeking ensued with Open Heart Surgery. Then when we had a sigh of relief after it was all over, he must've thought "Damn I ain't getting this middle child syndrome thing" and it was revealed he has Autism. Now that's a great way to not be ignored!!
Looking at my blog, so far Jack and his Autism have reigned supreme. But ask most families who have a child on the spectrum and they will say that a lot of the focus, planning and decisions are around the child with ASD. It isn't spoiling them, it is making life much easier and less of an uphill battle for the entire family. This is not to say Jack is more difficult than his brother or sister. He is just very different.. in a good way (and sometimes in a not so good way).
The ironic thing is, is that Jack wouldn't even notice if there was a bit of "middle child syndrome" going on. Well not at this stage. Although he does have an extremely close relationship with me and does show signs of jealousy if I am focussing on Liam or Evangeline. But overall he is happy doing his own thing and doesn't want attention from anyone else.
I am extremely aware of sharing myself around the three. I do spend a lot more time and energy on Jack and I do feel guilty about that, but at the same time I know the effort I put in with Jack over the next few years will be the greatest investment ever for not only him, but the whole family. And besides Liam thinks the sun shines out of Jack's butt! So Liam doesn't get too jealous when I spend time playing with Jack. Instead he just laughs at all the antics, which in turn makes me smile. Then there is Evangeline... all she will ever know is two brothers withspecial needs Superhero powers! I often worry what kind of life she will experience in her position. How it will affect her. I am hoping it will make her one of the world's most understanding and empathetic humans. I do take out time for her, so we can have our 'girly' days, but she will definately have a lot more on her plate than most girls.
So there you have it. There is no "Middle Child Syndrome" in my house. But I may have to come up with the syndrome name for youngest sibling with exceptional brothers... we shall call it Evangeline Syndrome for the time being *insert winky face*. I will try to feature my dear daughter a bit more in my blog*, because Idon't want her reading this when she's older and having a bitch fit about how little she featured adore her to pieces and she needs to be celebrated too, as all our children do, whether they have additional needs or not.
*next post will be an Evangeline special edition
Of course with our eldest, Liam, having such a severe physical disability there was always that worry of focussing much more attention on Liam than his siblings. So it was something I was aware of.
My husband still suffers from it a bit. And I remember my mother in law saying "poor Jack will suffer the middle child syndrome too". My inner monologue response was: "Not if I have anything to do with it!", and on the outside I did my usual nod and smile, because I am
Funny thing is, Jack had his own thoughts of: "Not if I have anything to do with it!" He went and got himself a Congenital Heart Defect, thus major attention seeking ensued with Open Heart Surgery. Then when we had a sigh of relief after it was all over, he must've thought "Damn I ain't getting this middle child syndrome thing" and it was revealed he has Autism. Now that's a great way to not be ignored!!
Looking at my blog, so far Jack and his Autism have reigned supreme. But ask most families who have a child on the spectrum and they will say that a lot of the focus, planning and decisions are around the child with ASD. It isn't spoiling them, it is making life much easier and less of an uphill battle for the entire family. This is not to say Jack is more difficult than his brother or sister. He is just very different.. in a good way (and sometimes in a not so good way).
The ironic thing is, is that Jack wouldn't even notice if there was a bit of "middle child syndrome" going on. Well not at this stage. Although he does have an extremely close relationship with me and does show signs of jealousy if I am focussing on Liam or Evangeline. But overall he is happy doing his own thing and doesn't want attention from anyone else.
I am extremely aware of sharing myself around the three. I do spend a lot more time and energy on Jack and I do feel guilty about that, but at the same time I know the effort I put in with Jack over the next few years will be the greatest investment ever for not only him, but the whole family. And besides Liam thinks the sun shines out of Jack's butt! So Liam doesn't get too jealous when I spend time playing with Jack. Instead he just laughs at all the antics, which in turn makes me smile. Then there is Evangeline... all she will ever know is two brothers with
So there you have it. There is no "Middle Child Syndrome" in my house. But I may have to come up with the syndrome name for youngest sibling with exceptional brothers... we shall call it Evangeline Syndrome for the time being *insert winky face*. I will try to feature my dear daughter a bit more in my blog*, because I
*next post will be an Evangeline special edition
Wednesday, 10 August 2011
Happiness is "Yellow Hat"... and your neighbour wanting to record you!?..
I am a firm believer in enjoying the 'small things'.. well actually they are small to others, but fricking huge to me!! I like to soak up all the awesomeness that occurs around me and then think about how I would write it as a 'status update' later and just feel the wonderment of life and appreciate each day that I am blessed with.
Today I was playing with Mr Middle aka Jack, in our little ball pit in our back yard. We were surrounded by all sorts of coloured balls *er duh* and Jack says: "Yeyyow" (now this is a brand new thing and I get so excited everytime he says a word, any word!). I respond with: "Yes there are yellow balls everywhere". I am hoping he says "yeyyow bawws", but no, he says: "yeyyow.. hat". I was blown away with the fact he was stringing TWO words together, another ginormous leap in development for Jack, then I started to say "There's no yellow hat out here", when I figured this opportunity was gold for him to realise that words he says can hold so much meaning. I jump up like a woman possessed: "Yes you want a yellow hat! I will run inside and get a yellow hat! Stay there, I'm getting this yellow hat you want, that you asked for". I know how desperate this may have sounded, but for Jack with his Autism, at this point he doesn't know that with words he can actually ASK for something, and so I was keen to let him know that when he says something he is going to bloody well get it! I think I pretty much danced my way inside the house (danced really fast though, I didn't want him to lose the meaning of the situation!) and out I came singing "Here's your yellow hat Jack!!!" and plonked it on his head. Now Jack hates, hates, things on his head. But he just slowly took it off and try to put it on my head. Ah bless, he was protecting his mummy from the sun. You couldn't wipe my smile off with a brick.
I was on cloud nine for most of the day, then...
In the afternoon out in the setting sun on our front lawn, I hung out with my three muskateers. I am Queen of Obliviousness and I don't realise how loud I am and how much the neighbours can hear me and actually listen to me! So when our bachelor neighbour sauntered on over to me whilst I was in the very lady like position of sitting with a massive leg spread on the driveway playing 'crashing cars' with Jack, and then proceeded to start a conversation that began with: "I almost recorded you the other day"... I was a little freaked out.
"Sorry? You nearly reported me?" I was worried he was talking children's services, and I was going to explain that Liam always was quadraplegic, then he repeated "I almost recorded you". I paused. Hmmm ok. I gave him that WTF look. He started to grin: "I heard you singing to your children the other day. You have a beautiful voice". I laughed "Oh dear, sorry about that. I have a shocking singing voice". I could feel my face burn into a bright beetroot. "No really, you are good. And I think you're a wonderful mum. I always hear you singing and playing with your children"... Well that is one of the biggest compliments anyone can give a mum.. not the singing *uh duh*, but the fact that someone has observed you and appreciated motherhood in it's simplest form.
I went from one 'cloud 9' to another.. ok is that even possible? Did that even make sense? Two cloud 9's? Whatever. It was a top day, as most of my days are.. even if they're not, I'll bloody well make them top! Bwahahahahahahahahahahahahahaha!!!
Today I was playing with Mr Middle aka Jack, in our little ball pit in our back yard. We were surrounded by all sorts of coloured balls *er duh* and Jack says: "Yeyyow" (now this is a brand new thing and I get so excited everytime he says a word, any word!). I respond with: "Yes there are yellow balls everywhere". I am hoping he says "yeyyow bawws", but no, he says: "yeyyow.. hat". I was blown away with the fact he was stringing TWO words together, another ginormous leap in development for Jack, then I started to say "There's no yellow hat out here", when I figured this opportunity was gold for him to realise that words he says can hold so much meaning. I jump up like a woman possessed: "Yes you want a yellow hat! I will run inside and get a yellow hat! Stay there, I'm getting this yellow hat you want, that you asked for". I know how desperate this may have sounded, but for Jack with his Autism, at this point he doesn't know that with words he can actually ASK for something, and so I was keen to let him know that when he says something he is going to bloody well get it! I think I pretty much danced my way inside the house (danced really fast though, I didn't want him to lose the meaning of the situation!) and out I came singing "Here's your yellow hat Jack!!!" and plonked it on his head. Now Jack hates, hates, things on his head. But he just slowly took it off and try to put it on my head. Ah bless, he was protecting his mummy from the sun. You couldn't wipe my smile off with a brick.
I was on cloud nine for most of the day, then...
In the afternoon out in the setting sun on our front lawn, I hung out with my three muskateers. I am Queen of Obliviousness and I don't realise how loud I am and how much the neighbours can hear me and actually listen to me! So when our bachelor neighbour sauntered on over to me whilst I was in the very lady like position of sitting with a massive leg spread on the driveway playing 'crashing cars' with Jack, and then proceeded to start a conversation that began with: "I almost recorded you the other day"... I was a little freaked out.
"Sorry? You nearly reported me?" I was worried he was talking children's services, and I was going to explain that Liam always was quadraplegic, then he repeated "I almost recorded you". I paused. Hmmm ok. I gave him that WTF look. He started to grin: "I heard you singing to your children the other day. You have a beautiful voice". I laughed "Oh dear, sorry about that. I have a shocking singing voice". I could feel my face burn into a bright beetroot. "No really, you are good. And I think you're a wonderful mum. I always hear you singing and playing with your children"... Well that is one of the biggest compliments anyone can give a mum.. not the singing *uh duh*, but the fact that someone has observed you and appreciated motherhood in it's simplest form.
I went from one 'cloud 9' to another.. ok is that even possible? Did that even make sense? Two cloud 9's? Whatever. It was a top day, as most of my days are.. even if they're not, I'll bloody well make them top! Bwahahahahahahahahahahahahahaha!!!
Tuesday, 9 August 2011
Wordless Wednesday....
I am joining My Little Drummer Boys and Kate Says Stuff for 'Wordless Wednesday'. Bear with me, I've never done this before and I hope I do it right *insert winky face*
These three photos sum up my three muskateers perfectly ! (sorry I put some words in woops!)
Thursday, 14 July 2011
My children's hugs...
I was discussing with my friend J about the hugs I get from my kids. Well actually they are my interpretation of hugging...
You see with Liam, he can't 'wrap' his arms around you to hug, but when you give him a cuddle you can feel his arm muscles tighten and his arms become quite stiff. I call this a massive bear hug, and I relish those from my big boy!
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After describing these hugs to my friend I realised that some people may beg to differ on what I deem a 'hug' or a 'kiss' (all my children bite me when they 'kiss' me lol). I know my versions must seem so unconventional, but these 'hugs' and 'kisses' are totally normal for me and I cherish every single one of them *cue corny 'aaaaah' sound from sitcom audience*
You see with Liam, he can't 'wrap' his arms around you to hug, but when you give him a cuddle you can feel his arm muscles tighten and his arms become quite stiff. I call this a massive bear hug, and I relish those from my big boy!
Liam and his bloody huge grin
With Jack it gets a bit complicated, because you may go for some close contact and he could push you away, but then later you may just be standing there minding your own when bam! Jack wraps his little self around your legs and then choofs off again before you've even realised a 'hug' took place. Then there's the times where you go to embrace him and he lets you. I call them reciprocated hugs, even though he doesn't hug back... he is letting me do it, so I take that as a huge sign of affection. Over time I've been getting more and more of those and less of the push aways. I do those hugs with Liam too because he doesn't always have the strength to 'hug' me in his way, but I know that it is reciprocated because he usually has a bloody big grin on his face :-)
Jack getting ready to bite kiss
My little girl is funny because she wants to be held but doesn't want to be hugged, if that makes sense. Everytime I go for the squeeze she wriggles about and seems to want to 'get going'. But I do get a snuggle cuddle with her when we lie down for a nap together or when she screams her way out of her cot and into mummy and daddy's bed to sleep the rest of the night.
I just love rubbing my nose into those collosal cheeks
With all three they let me smooch on their big, plump, juicy cheeks. And that is the most scrumptious part of being a mummy, for me anyways.After describing these hugs to my friend I realised that some people may beg to differ on what I deem a 'hug' or a 'kiss' (all my children bite me when they 'kiss' me lol). I know my versions must seem so unconventional, but these 'hugs' and 'kisses' are totally normal for me and I cherish every single one of them *cue corny 'aaaaah' sound from sitcom audience*
Tuesday, 28 June 2011
Children at play...
I always get a bit nervous taking the children to play areas, parks and Softplay type of venues.. Mainly because I worry about the interaction between my children and other children causing an issue, and so the parents of the other children will then create an issue with me. It has happened in the past, when I was defending Liam from some bullying children at Softplay. I simply told them to "Stop throwing balls at my son's head" in a stern voice, and then I got attacked by their mother. After that incident I really didn't want to go to any of these places. But a few years have passed and I think I have a bit more of a thicker head skin. So I have managed to brave some of these venues once more.
Today I was a little anxious again because I took Jack to a playground area at the local shopping centre and I was worried what the other kids might be like and how Jack may react (he is big on personal space and if you encroach some biting may ensue). I need not have worried. Jack had a blast! He even made a connection with a girl a year or two older than him. They were chasing the birds flying over head, giggling and squealing with delight. Then when they came to the fence, they stopped and looked at eachother!! Jack looked another child in the eyes!! Then as I watched, my heart skipped a beat, my inner monologue said "Please don't bite her" as he slowly approached her.... then he reached out and touched her dress. I breathed a sigh of relief. I then puffed up in pride. My son, the sly casanova... ok so maybe I'm going a bit OTT here, but I was truly blown away. Jack dislikes other kids in his play space. Today he didn't mind sharing that space with an 'older woman'.
Today I was a little anxious again because I took Jack to a playground area at the local shopping centre and I was worried what the other kids might be like and how Jack may react (he is big on personal space and if you encroach some biting may ensue). I need not have worried. Jack had a blast! He even made a connection with a girl a year or two older than him. They were chasing the birds flying over head, giggling and squealing with delight. Then when they came to the fence, they stopped and looked at eachother!! Jack looked another child in the eyes!! Then as I watched, my heart skipped a beat, my inner monologue said "Please don't bite her" as he slowly approached her.... then he reached out and touched her dress. I breathed a sigh of relief. I then puffed up in pride. My son, the sly casanova... ok so maybe I'm going a bit OTT here, but I was truly blown away. Jack dislikes other kids in his play space. Today he didn't mind sharing that space with an 'older woman'.
Friday, 24 June 2011
Going into his world...
It does seem to be what my life is about at the moment... Jack and his world. I mean I'm not ignoring or neglecting Liam and Evangeline. But I certainly have this part of me that is very consumed in Jack and his needs at the moment. I think it may be partly to do with how important this time is in his development. How integral it is for us to 'nip things in the bud'. The truth is 'Early Intervention' has proven to be of the utmost importance in the treatment of Autism or any disability for that matter. As soon as that diagnosis is given, there should be no time wasted. While their brains are growing at a very fast rate, it is vital we change the 'pathways' and 'rewire'.
In Jack's case we have to focus on Speech Therapy and Occupational Therapy (with Liam it is both of those plus Physio Therapy). At the moment in speech we are focussing on gaining Jack's eye contact and in Occupational Therapy we will be focussing on his sensory needs. Currently we meet with the therapists once a fortnight.
Now we have been lucky enough to know an amazing mum who made a trip to the United States to take part in a special program created by the Autism Treatment Center of America that has helped parents of children with Autism to 'unlock their child's mind'. It is called the Son-Rise Program. Now this is a very intensive form of therapy. Intensive, due to the extreme focus on the individual child, all day, everyday. But what I love about this program is that it is all about connections, about going into the child's world and enjoying it! Then once the child shares their world with you, you slowly pull them into our world. It totally makes sense! And I'm already seeing how it is effective...
One of the brochures my friend came back with from the Autism Treatment Center of America, was how to "Kick-Start Your Son-Rise Program". There were 3 simple techniques:
I won't be able to do the intensive program. And I think Jack may do well without the intensive, but I think applying a lot of the principles as much as possible will make a great impact on him. Yet I may have to have a meeting with those in Jack's life, to educate them on how to interact with him. How to 'get into his world'.
My friend, the amazing mum who took a leap of faith and went to the States, is embarking on the actual Son-Rise Program with her beautiful son and in doing so she needs volunteers. I have offered my energetic, effervescent self for 2 hours a week. In those two hours I will be one on one with her son. I am so excited to be apart of the 'unlocking' of this little boy. I am looking forward to seeing this program in action and in doing so I hope to further educate myself on treating Autism. Not only for helping Jack. But through all this I think I have found my calling... I would love to work in Early Intervention therapies for Autism Spectrum Disorder. I finally figured out what I want to do in life!!!! I already 'get' their world. I would be perfect in making that 'bridge' between the 2 worlds.
It just shows.. EVERYTHING is meant to be.
In Jack's case we have to focus on Speech Therapy and Occupational Therapy (with Liam it is both of those plus Physio Therapy). At the moment in speech we are focussing on gaining Jack's eye contact and in Occupational Therapy we will be focussing on his sensory needs. Currently we meet with the therapists once a fortnight.
Now we have been lucky enough to know an amazing mum who made a trip to the United States to take part in a special program created by the Autism Treatment Center of America that has helped parents of children with Autism to 'unlock their child's mind'. It is called the Son-Rise Program. Now this is a very intensive form of therapy. Intensive, due to the extreme focus on the individual child, all day, everyday. But what I love about this program is that it is all about connections, about going into the child's world and enjoying it! Then once the child shares their world with you, you slowly pull them into our world. It totally makes sense! And I'm already seeing how it is effective...
One of the brochures my friend came back with from the Autism Treatment Center of America, was how to "Kick-Start Your Son-Rise Program". There were 3 simple techniques:
- Spend 30 minutes a day with your child (uninterrupted)
- 'Join' your child (do exactly what your child is doing and focus on enjoying time in 'their world')
- Focus on eye contact (place all objects that you are using in the interaction close to your eyes, to create eye contact)
I won't be able to do the intensive program. And I think Jack may do well without the intensive, but I think applying a lot of the principles as much as possible will make a great impact on him. Yet I may have to have a meeting with those in Jack's life, to educate them on how to interact with him. How to 'get into his world'.
My friend, the amazing mum who took a leap of faith and went to the States, is embarking on the actual Son-Rise Program with her beautiful son and in doing so she needs volunteers. I have offered my energetic, effervescent self for 2 hours a week. In those two hours I will be one on one with her son. I am so excited to be apart of the 'unlocking' of this little boy. I am looking forward to seeing this program in action and in doing so I hope to further educate myself on treating Autism. Not only for helping Jack. But through all this I think I have found my calling... I would love to work in Early Intervention therapies for Autism Spectrum Disorder. I finally figured out what I want to do in life!!!! I already 'get' their world. I would be perfect in making that 'bridge' between the 2 worlds.
It just shows.. EVERYTHING is meant to be.
Monday, 20 June 2011
No shame...
Yes people I feel no shame whatsoever when it comes my kids or myself. In actual fact I embrace the things that set them apart from the rest. For example today, I was out to lunch with Knight in Shining Armour and Evangeline (aka Little) and Jack (aka Mr Middle). Jack was (as my husband likes to refer to it as) stimming his balls off. Lots of rocking and humming, playing with his hands and shaking his head. Now some people may sit there and feel embaressed, thinking "Why can't my child behave normally?". But in our case, hubby and I just looked at eachother and beamed. Mr Middle was happy as can be. We could enjoy our lunch for a start and we had awesome entertainment to boot! I had no idea if anyone was watching because I never checked and quite frankly didn't give two hoots if anyone was.
I have come to this place of understanding... I do not want to have my child be like everyone else. I do not want to be like everyone else myself. This isn't about being non-conforming. This is about being yourself without harming others or yourself. This is about having a comfortable space within one's own world. So what if you need to play with your hair to feel 'safe' or if your child needs to cover their ears when the noise becomes too overwhelming. Does it hurt others to do this? The only thing it might hurt is somebody's sense of normality. But as we all say these days "what is normal?".
I say celebrate what sets us and our children apart from the rest! I say yell it from the roof tops! Embrace what makes us unique! If we as adults can show how awesome it is to do this, our children will follow suit! Maybe then we can eradicate bullying and prejudice. Oh a world where we can be excited to share our eccentricities rather than hide those quirky differences. And believe you, me, we ALL have quirks and eccentricities.
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I have come to this place of understanding... I do not want to have my child be like everyone else. I do not want to be like everyone else myself. This isn't about being non-conforming. This is about being yourself without harming others or yourself. This is about having a comfortable space within one's own world. So what if you need to play with your hair to feel 'safe' or if your child needs to cover their ears when the noise becomes too overwhelming. Does it hurt others to do this? The only thing it might hurt is somebody's sense of normality. But as we all say these days "what is normal?".
I say celebrate what sets us and our children apart from the rest! I say yell it from the roof tops! Embrace what makes us unique! If we as adults can show how awesome it is to do this, our children will follow suit! Maybe then we can eradicate bullying and prejudice. Oh a world where we can be excited to share our eccentricities rather than hide those quirky differences. And believe you, me, we ALL have quirks and eccentricities.
Wednesday, 1 June 2011
The House of Miracles and Amazement...
As any parent of a child with additional needs/ disability will know, there is bound to be some amazing unbelievable achievements by our children that we get to be blown away by. We are given a possible prognosis and then everything positive we experience after that is just fricking amazing!!
Liam for example has issues with his mouth, tongue and lips, so when it comes to food, he needs it thickened up (we feel very lucky he is able to eat orally, as tasting food is one of Liam's biggest pleasures in life). A few years ago when it came to drinking Liam could only drink out of a baby's bottle and I really thought that he would be drinking out of a baby's bottle for the rest of his life. I tried and tried to get him to 'sip' from a straw (I used a poppa and would squeeze the juice up to "tempt" him), day in and day out... and nothing, he still needed the bottle. Then one day while we were watching a dvd together and I was trying to get Liam to 'sip' from the straw, I was looking at the TV but holding the straw to his lips, I felt this 'movement' in the straw and looked at Liam, he was SIPPING!!!! You have no idea how excited I was!! Ok you might. But I seriously have the moment burned brilliantly into my memory. Angels were singing I tell you!!! A major orchestra was blaring! My heart flew to the moon and back! Reality check is that everyone in the 'mainstream' can do this, but double reality check, it wasn't a given for my son. I still get pretty stoked thinking about how my big boy Liam can sip out of a straw and hasn't touched a baby bottle since!
Ok so with the way things have been going with Jack, development has been slow, but of course waaaay faster than Liam . So I have been enjoying all the awesome milestones of crawling, walking, self feeding and clapping. Even though they've been late according to the whole 'milestone' generalisation, I have enjoyed every one of them. And now we know that Jack's course of development is unknown (haha kind of an oxymoron). We have no idea how he will progress, what will be his strengths and what will be his weaknesses (and I guess this is true of all children, no matter whether they are 'mainstream' or have 'additional needs'), but in Jack's case he may be good at a very specific thing and yet be unable to do a large number of things... we just don't know. Or do we..... Well yesterday I got a glimpse into what maybe one of his strengths. I was just chatting with a good friend who was visiting (with flowers no less, yes I've claimed all the awesome people as my friends hehehe) and Jack just started counting (toddler words but it was definite that he was counting), I looked over at him and he was reading through his counting book. WTF!?!? My son reads and counts??? Since when??? Aaaaah the beauty of Autism. He can't ask for his juice or biscuit but he can fricking count!!!! Once again my heart flew to the moon and back!!! I'm still on cloud nine with it!!
Parents of children with additional needs have moments of "why? why my child? why this?" but we have long immmense awesome sessions of "hell yeah that's awesome!!! how amazing is my kid!!!!".
I am not saying 'mainstream' children aren't amazing or wonderful... otherwise Evangeline would have my guts for garters *insert sitcom audience laughter*. But ALL children are amazing, we just get to see it in a different light. And now I get to experience this on 2 different levels. I am taking this as a blessing. I do indeed live in the House of Miracles and Amazement.
Liam for example has issues with his mouth, tongue and lips, so when it comes to food, he needs it thickened up (we feel very lucky he is able to eat orally, as tasting food is one of Liam's biggest pleasures in life). A few years ago when it came to drinking Liam could only drink out of a baby's bottle and I really thought that he would be drinking out of a baby's bottle for the rest of his life. I tried and tried to get him to 'sip' from a straw (I used a poppa and would squeeze the juice up to "tempt" him), day in and day out... and nothing, he still needed the bottle. Then one day while we were watching a dvd together and I was trying to get Liam to 'sip' from the straw, I was looking at the TV but holding the straw to his lips, I felt this 'movement' in the straw and looked at Liam, he was SIPPING!!!! You have no idea how excited I was!! Ok you might. But I seriously have the moment burned brilliantly into my memory. Angels were singing I tell you!!! A major orchestra was blaring! My heart flew to the moon and back! Reality check is that everyone in the 'mainstream' can do this, but double reality check, it wasn't a given for my son. I still get pretty stoked thinking about how my big boy Liam can sip out of a straw and hasn't touched a baby bottle since!
Ok so with the way things have been going with Jack, development has been slow, but of course waaaay faster than Liam . So I have been enjoying all the awesome milestones of crawling, walking, self feeding and clapping. Even though they've been late according to the whole 'milestone' generalisation, I have enjoyed every one of them. And now we know that Jack's course of development is unknown (haha kind of an oxymoron). We have no idea how he will progress, what will be his strengths and what will be his weaknesses (and I guess this is true of all children, no matter whether they are 'mainstream' or have 'additional needs'), but in Jack's case he may be good at a very specific thing and yet be unable to do a large number of things... we just don't know. Or do we..... Well yesterday I got a glimpse into what maybe one of his strengths. I was just chatting with a good friend who was visiting (with flowers no less, yes I've claimed all the awesome people as my friends hehehe) and Jack just started counting (toddler words but it was definite that he was counting), I looked over at him and he was reading through his counting book. WTF!?!? My son reads and counts??? Since when??? Aaaaah the beauty of Autism. He can't ask for his juice or biscuit but he can fricking count!!!! Once again my heart flew to the moon and back!!! I'm still on cloud nine with it!!
Parents of children with additional needs have moments of "why? why my child? why this?" but we have long immmense awesome sessions of "hell yeah that's awesome!!! how amazing is my kid!!!!".
I am not saying 'mainstream' children aren't amazing or wonderful... otherwise Evangeline would have my guts for garters *insert sitcom audience laughter*. But ALL children are amazing, we just get to see it in a different light. And now I get to experience this on 2 different levels. I am taking this as a blessing. I do indeed live in the House of Miracles and Amazement.
Thursday, 26 May 2011
Life in pictures...
I love photographs. I love looking at other people's photos, I love looking at my own and I love sharing them. Photos can be both very revealing as well as very deceiving.
I thought that I would do a post of parts of my life in pictures today. Just to give you a glimpse into my world. Sometimes photographs can say so much more than words.
I urge you to take some "relax" time looking back at old photographs you have, of your self, of your family, friends and so on. It will definately bring back a huge blog of memories you can write in your head.
I thought that I would do a post of parts of my life in pictures today. Just to give you a glimpse into my world. Sometimes photographs can say so much more than words.
My mum when she was pregnant with me, 1979
Mum and I about 6 or 7 months prior to her passing, 1997
My university graduation with my Knight in Shining Armour (the next day I proposed to him) 2004.
My first child, Liam, when he was 2 days old. 2005
Our wedding day. Liam was a lucky little boy to be witness to our official nuptials. 2006
Liam's 1st Birthday. 2006
A flower from one of the many beautiful bunches we received after losing Dylan. 2008
Our 'early bird' Jack (born at 35 weeks gestation) when he was 3 days old. 2009
Jack after his Open Heart Surgery. 2009
The Christmas gift that keeps on giving... my two favourite boys, Jack & Liam. 2009
PINK!! I finally got my little girl, Evangeline. 2010
Well there you have a bit of my life in a nutshell in photos... It doesn't scratch the surface really.
As I blog on I will try to add images that are important/relevant to what I am writing about.
I also would like to share my love of taking photographs and show you all my artsy fartsy side.I urge you to take some "relax" time looking back at old photographs you have, of your self, of your family, friends and so on. It will definately bring back a huge blog of memories you can write in your head.
Wednesday, 25 May 2011
I'm back and I'm armed with Frangelico...
The kids are in bed and I'm "relaxing" with a few Frangelico on the rocks.
I went for my walk. It was fresh to say the least. But sometimes you need that chilly breeze to hit your face and wake you up a bit. You know when you walk around in a bit of a daze, not sure what to feel or think, then there's that gust of wind that just slaps you in the face and says "wake up!". Well I'm awake. I guess I've been awake this whole time...
This news is good and it's bad. In the words of someone I spoke to today "Congratulations and commiserations". It's that relief from finally knowing what is going on with Jack, and it's that grief that every parent who has had a child diagnosed with a 'disability' needs to go through. Although I want to change that word/term 'disability' to 'diffability' as in different ability. That's it I'm writing into Oxford or Macquarie Dictionary and demanding that they include my new word "DIFFABILITY".
Some people may ask why am I somewhat shocked from today's events. I guess it's like being told you are going to get kicked in the face, and you prepare for it as much as you can, you think you're ready then BAM!! you are shocked they went through with the kick and then the pain hits, even though you braced yourself 100%. I think the pain bit hasn't even kicked in.. I'm just in shock. I know it may be hard to understand my shock unless you've been in the same position. I know this because at one stage I was the person listening to the stories of parents who had children with 'developmental delays with autistic traits', who were shocked when they got that final diagnosis. I thought to myself ".. but they knew..". Hmm not exactly. They were just discovering their child and what their child may have. It isn't until the professionals put it into reports, into solid black and white words that it becomes their life.
I am the first to say how bloody lucky I am to have my awesome children. And Jack is the business! I wouldn't change him for the world. Yet having said that, this is not the everyday experience every parent goes through, and believe me I know this is not going to be a smooth ride. It's funny though, I worry people will think how strange that I am grieving this, the fact I have a child who cannot walk but Jack can, I have a child who cannot feed himself, yet Jack can.... Yet any other parent who has been told "Your child had Autism", can break down, cry, grieve. I feel like I shouldn't because I did get the child that is self mobile, that can feed himself. Oh I know I need to cry, I need to grieve. I'm afraid it's going to hit me like it did after Jack was diagnosed with the congenital heart defect Tetralogy of Fallot... only after he had the open heart surgery did I fall apart fully. I came undone at the seams. It's good that I realise this and maybe I can let myself "undo a few stitches". I give myself permission to cry like a baby... but at the moment I can't.
Drinks break people... Going to pour myself another Frangelico... see you in a bit..
I went for my walk. It was fresh to say the least. But sometimes you need that chilly breeze to hit your face and wake you up a bit. You know when you walk around in a bit of a daze, not sure what to feel or think, then there's that gust of wind that just slaps you in the face and says "wake up!". Well I'm awake. I guess I've been awake this whole time...
This news is good and it's bad. In the words of someone I spoke to today "Congratulations and commiserations". It's that relief from finally knowing what is going on with Jack, and it's that grief that every parent who has had a child diagnosed with a 'disability' needs to go through. Although I want to change that word/term 'disability' to 'diffability' as in different ability. That's it I'm writing into Oxford or Macquarie Dictionary and demanding that they include my new word "DIFFABILITY".
Some people may ask why am I somewhat shocked from today's events. I guess it's like being told you are going to get kicked in the face, and you prepare for it as much as you can, you think you're ready then BAM!! you are shocked they went through with the kick and then the pain hits, even though you braced yourself 100%. I think the pain bit hasn't even kicked in.. I'm just in shock. I know it may be hard to understand my shock unless you've been in the same position. I know this because at one stage I was the person listening to the stories of parents who had children with 'developmental delays with autistic traits', who were shocked when they got that final diagnosis. I thought to myself ".. but they knew..". Hmm not exactly. They were just discovering their child and what their child may have. It isn't until the professionals put it into reports, into solid black and white words that it becomes their life.
I am the first to say how bloody lucky I am to have my awesome children. And Jack is the business! I wouldn't change him for the world. Yet having said that, this is not the everyday experience every parent goes through, and believe me I know this is not going to be a smooth ride. It's funny though, I worry people will think how strange that I am grieving this, the fact I have a child who cannot walk but Jack can, I have a child who cannot feed himself, yet Jack can.... Yet any other parent who has been told "Your child had Autism", can break down, cry, grieve. I feel like I shouldn't because I did get the child that is self mobile, that can feed himself. Oh I know I need to cry, I need to grieve. I'm afraid it's going to hit me like it did after Jack was diagnosed with the congenital heart defect Tetralogy of Fallot... only after he had the open heart surgery did I fall apart fully. I came undone at the seams. It's good that I realise this and maybe I can let myself "undo a few stitches". I give myself permission to cry like a baby... but at the moment I can't.
Drinks break people... Going to pour myself another Frangelico... see you in a bit..
Thursday, 19 May 2011
These are a few of my favourite things..
Come on sing it with me!!
I thought I'd do a little list for tonight's blogging.. of my favourite things. Remember Carson Kressley on "Queer Eye for the Straight Guy" and his term zhushing? Well I'm zhushing my soul today *insert smiley face here*
Get those rainbows, lollipops and sunshine out people!!
I thought I'd do a little list for tonight's blogging.. of my favourite things. Remember Carson Kressley on "Queer Eye for the Straight Guy" and his term zhushing? Well I'm zhushing my soul today *insert smiley face here*
- Having coffee dates with my eldest son Liam. He loves it! We share cheesecake and cream as we people watch and chat (well I do the chatting, while Liam
rolls his eyeslaughs at my wittiness). This is a tradition we started from when he was a little wee bubba. It started at Starbucks where the wonderful people who worked there knew Liam by name and our order off by heart. It is now a bit of a rare occurance, so when I ask him if he wants to have a coffee date at the shops with me he waves his arms madly and gives me a great big massive grin. - Spending time in "Jack World". Oh it's the business!! Whether it's on the trampoline bouncing and rolling around; or running through sheets/blankets (one of his favourite games! and it is a buzz, I recommend you try it people!); spinning around and getting wickedly dizzy (somehow he walks better than me after it); or making funny sounds/noises, "Jack World" is always fun. It's when he looks into my eyes I get this electric bolt through me, (because usually he only gives fleeting eye contact when he wants) so when he makes real eye contact, a magic connection is made and my heart fills like a balloon I almost pop!
- My lazy 'nap times' with Evangeline. We just snuggle up to eachother in bed and I feel that beautiful Mother and Daughter bond. She smiles her 'crinkled-up-nose' grin, says 'mama', and I'm complete.
- I guess I better add something about the hubby.. hahaha. Well he would totally get that. He likes to tell awful jokes and sometimes some really good ones. I love that he makes me smile at least once a day without fail. I think he especially loves the challenge of making me smile when I'm sad. And not a day goes by without some sort of double entendre joke or innuendo (in-your-endo!), and I must admit I'm just as bad at doing that too. If you can't be silly and in our case dirty, at least once a day, well that's a day wasted really.
Get those rainbows, lollipops and sunshine out people!!
Tuesday, 17 May 2011
Diagnosis... part 2
On this path of diagnosis we are on with Jack, I am having flashbacks to just before Liam was diagnosed. In particular the whole "Are you sure? Really? What makes you say that? he looks normal?". I am then put in a position to list all the 'strange' things that he's doing or the things he's not doing, but should. Which then leads to me feeling like I'm betraying my child by talking 'negatively' about them. I feel like a terrible person who judges my child and points out all their 'flaws'. But then I slap myself in the face (figuratively speaking of course) and say "You are trying to help your child by finding out what is happening and how to help". And that is what happened with Liam. I got him diagnosed early (6 months old) and we could get access to all the therapy and help we needed. I also had an answer to why he wasn't developing like 'normal' (yes, yes, I know... what is 'normal' anyway blah blah). But before that all important diagnosis I had people saying I was being a bit 'dramatic' suggesting he have Cerebral Palsy.. Yes I really wanted to create drama by trying to diagnose my child with CP. Pffft.
Now it's happening all over again. "You really think Jack has Autism? I don't see it"... Funny that, because people with Autism don't tend to wear a badge or a t-shirt saying that.. But I may look into that later. The worst part was people were trying to blame Jack's developmental delay and Autistic traits on Liam, oh and not just Liam, but more to the point ME! Ok I know I'm not the perfect mum (um nobody is... just putting that out there), and yes Liam needs more help than most children, but the thought that I had somewhat neglected Jack so he wouldn't talk or give eye contact etc, well that very much hurt me to the core. I played with Jack, I sang to Jack, I was a frigging clown for Jack!!! But I questioned that after people suggested my focussing on Liam caused Jack's problems. I fell apart at the end of last year when we started this journey. I felt sick to the stomach. I really pride myself on being a loving, caring and very present mum. And here was this possibility that I was the cause of Jack's delays and traits. Luckily after I hit rock bottom mentally about it, I picked myself up, dusted myself off and neglected the housework and then went to town on speech therapy with Jack. Looking back I KNOW I wasn't the cause, and neither was Liam. Jack was always a little different, I just didn't want to see that because I was so desperate for 'normal'. Denial, not just a river in Egypt they say.
People also offered up the idea that may be Jack was copying some of the kids we see every week through Liam's old playgroup. Jack can't even copy me, if you know what I'm saying. How does one copy: lack of eye contact? or certain stims ?
Another interesting thing is that when people question Jack having Autism it's almost as if they are saying it's an insult, like I'm calling him a 'dickhead'. Autism is a condition, it is not an insult. What is an insult is not getting help for my child. That's insulting to Jack as a human being. He has every right to the best chance in life, as does his brother Liam.
Oh dear I sound a bit ranty and vent like tonight... Sorry people, but it's something that's been playing on my mind and I really needed to get it off my chest. I promise next post will be a bit more light-hearted.. maybe.
Now it's happening all over again. "You really think Jack has Autism? I don't see it"... Funny that, because people with Autism don't tend to wear a badge or a t-shirt saying that.. But I may look into that later. The worst part was people were trying to blame Jack's developmental delay and Autistic traits on Liam, oh and not just Liam, but more to the point ME! Ok I know I'm not the perfect mum (um nobody is... just putting that out there), and yes Liam needs more help than most children, but the thought that I had somewhat neglected Jack so he wouldn't talk or give eye contact etc, well that very much hurt me to the core. I played with Jack, I sang to Jack, I was a frigging clown for Jack!!! But I questioned that after people suggested my focussing on Liam caused Jack's problems. I fell apart at the end of last year when we started this journey. I felt sick to the stomach. I really pride myself on being a loving, caring and very present mum. And here was this possibility that I was the cause of Jack's delays and traits. Luckily after I hit rock bottom mentally about it, I picked myself up, dusted myself off and neglected the housework and then went to town on speech therapy with Jack. Looking back I KNOW I wasn't the cause, and neither was Liam. Jack was always a little different, I just didn't want to see that because I was so desperate for 'normal'. Denial, not just a river in Egypt they say.
People also offered up the idea that may be Jack was copying some of the kids we see every week through Liam's old playgroup. Jack can't even copy me, if you know what I'm saying. How does one copy: lack of eye contact? or certain stims ?
Another interesting thing is that when people question Jack having Autism it's almost as if they are saying it's an insult, like I'm calling him a 'dickhead'. Autism is a condition, it is not an insult. What is an insult is not getting help for my child. That's insulting to Jack as a human being. He has every right to the best chance in life, as does his brother Liam.
Oh dear I sound a bit ranty and vent like tonight... Sorry people, but it's something that's been playing on my mind and I really needed to get it off my chest. I promise next post will be a bit more light-hearted.. maybe.
Saturday, 14 May 2011
Diagnosis...
Just a quick post on my experience with diagnosis...
The process of Liam being diagnosed with Cerebral Palsy was quite quick. I liken it to gettting my arm chopped off with a chain saw really quickly. The process we are going through at the moment with Jack and Autism Spectrum Disorder is like having your arm chopped off with a butter knife.... It is much slower, there's a bit of hope the arm may stay on and the cutting will cease, but then the cutting continues and you just wish someone would hack it off!!!! I'm ready now!! Tell me now!!! I will be upset I've lost an arm but I'll know where I'm at and can move forward. Man I'm all about the moving forward. Ok maybe I've moved forward already, in my mind the arm is removed and I just want the professionals to catch the hell up.
The process of Liam being diagnosed with Cerebral Palsy was quite quick. I liken it to gettting my arm chopped off with a chain saw really quickly. The process we are going through at the moment with Jack and Autism Spectrum Disorder is like having your arm chopped off with a butter knife.... It is much slower, there's a bit of hope the arm may stay on and the cutting will cease, but then the cutting continues and you just wish someone would hack it off!!!! I'm ready now!! Tell me now!!! I will be upset I've lost an arm but I'll know where I'm at and can move forward. Man I'm all about the moving forward. Ok maybe I've moved forward already, in my mind the arm is removed and I just want the professionals to catch the hell up.
Wednesday, 11 May 2011
Where to start???
Okay so I have no idea how this will pan out, or play out... sounds like my life really lol. Oh dear I promised myself there'd be no 'lol'ing.
It's probably best I start with who I am...
Purely and simply... I am a 31 year old woman, married to my Knight in Shining Armour, with whom I have three beautiful and amazing children. The 'stranger than fiction' part? Oh well that's here, there and everywhere. Some of my life has been 'the norm' but I would have to say majority of it has been a wicked rollercoaster ride. The ride I think began in my teens when I suffered from Eating Disorders (ok that's probably more the norm thing these days eeek), and got the shock of my life at 15 when I was diagnosed with Type 1 Diabetes. My mum actually thought that the diabetes saved my life (from the anorexia and bulimia) but I did have relapses over the years. After the Diabetes diagnosis at 15, my whole family got the worse news ever when my mum was diagnosed with Pancreatic Cancer. I was 18, my mum was (ok I won't disclose her age, mum would not be impressed, she liked to keep that one 'mum'). Before I got to graduate from High school my mum passed away. She never got to see me graduate, go to uni, get married, have kids... something a lot of people tend to take for granted. I distinctly remember her saying to me as she was wasting away "The saddest thing is- I will never meet my grandchildren"... that has rung in my ears everyday of my life and has become louder since having my children.
After I graduated from High school I went on to university to study teaching. I partied extremely hard, which 90% of that partying I do regret, but I think that was my way of escaping the pain I felt from the loss of my mum. I suffered great bouts of depression, not knowing what I wanted in life, feeling lost and hopeless. I transferred degrees, then went back again to finish what I started. In that final year of uni I met a much younger man (I was 24, he was 18) and fell head over heels in love. We planned to be together for ever and so I decided to propose to him. Lucky for me, he accepted. Two months later we got a huge surprise... we were expecting a baby (to be born in Sept 2005)!
This was the start of the more major journey we weren't expecting...
The birth was traumatic and had complications. Our first born, Liam started having seizures and apneas after the emergency c-section. Months later we were to discover that the trauma at birth had caused a lifelong disability, severe Spastic Quadraplegic Cerebral Palsy. And so the beginning of an entirely new road... a road only the minority of people will experience.
We thought that our bad luck and traumatising experiences were over. Hmmm not bloody likely.. We wanted a sibling for Liam and fell pregnant in 2007. Half way through the pregnancy my waters broke and I had to give birth to my little boy Dylan, who was too young to survive outside the womb. My heart was broken. What had I done in a past life to get all this bad luck??? Ha! Well that was just the beginning. We became pregnant again in 2008. I was very worried but the pregnancy seemed to go well. Jack made an early appearance at 35 weeks, but he seemed healthy and happy. And we were extremely happy. Until we found out at 4 months old he had a congenital heart defect called Tetralogy of Fallot. The only way to fix it was with Open Heart Surgery. I couldn't believe it! So at 5 months old little Jacky had his OHS.
Now for another surprise... this time a good one lol. We were expecting another baby! Jack was only 9 months and we were in shock to say the least. As I neared the end of the pregnancy we started to worry about Jack's development... So he started Speech therapy at 15 months old.
Evangeline was born September 2010 and she was and is perfect! But I think my two boys are perfect too! Just a different kind of perfect. As Evy was blending well into our family, it became more obvious Jack was the 'black sheep'. Now we are on the journey of Jack being diagnosed with Autism Spectrum Disorder.
I know this is a heap of info to read in a first blog entry. My apologies. But I needed a kind of nutshell thing to keep you up to speed as a blog further. I will hopefully have entries organised in themes etc. So you don't have to pour through each individual entry if there is only one or two things you are interested in reading such as info on Cerebral palsy or Depression or Open heart Surgery or... you get the idea.
It's probably best I start with who I am...
Purely and simply... I am a 31 year old woman, married to my Knight in Shining Armour, with whom I have three beautiful and amazing children. The 'stranger than fiction' part? Oh well that's here, there and everywhere. Some of my life has been 'the norm' but I would have to say majority of it has been a wicked rollercoaster ride. The ride I think began in my teens when I suffered from Eating Disorders (ok that's probably more the norm thing these days eeek), and got the shock of my life at 15 when I was diagnosed with Type 1 Diabetes. My mum actually thought that the diabetes saved my life (from the anorexia and bulimia) but I did have relapses over the years. After the Diabetes diagnosis at 15, my whole family got the worse news ever when my mum was diagnosed with Pancreatic Cancer. I was 18, my mum was (ok I won't disclose her age, mum would not be impressed, she liked to keep that one 'mum'). Before I got to graduate from High school my mum passed away. She never got to see me graduate, go to uni, get married, have kids... something a lot of people tend to take for granted. I distinctly remember her saying to me as she was wasting away "The saddest thing is- I will never meet my grandchildren"... that has rung in my ears everyday of my life and has become louder since having my children.
After I graduated from High school I went on to university to study teaching. I partied extremely hard, which 90% of that partying I do regret, but I think that was my way of escaping the pain I felt from the loss of my mum. I suffered great bouts of depression, not knowing what I wanted in life, feeling lost and hopeless. I transferred degrees, then went back again to finish what I started. In that final year of uni I met a much younger man (I was 24, he was 18) and fell head over heels in love. We planned to be together for ever and so I decided to propose to him. Lucky for me, he accepted. Two months later we got a huge surprise... we were expecting a baby (to be born in Sept 2005)!
This was the start of the more major journey we weren't expecting...
The birth was traumatic and had complications. Our first born, Liam started having seizures and apneas after the emergency c-section. Months later we were to discover that the trauma at birth had caused a lifelong disability, severe Spastic Quadraplegic Cerebral Palsy. And so the beginning of an entirely new road... a road only the minority of people will experience.
We thought that our bad luck and traumatising experiences were over. Hmmm not bloody likely.. We wanted a sibling for Liam and fell pregnant in 2007. Half way through the pregnancy my waters broke and I had to give birth to my little boy Dylan, who was too young to survive outside the womb. My heart was broken. What had I done in a past life to get all this bad luck??? Ha! Well that was just the beginning. We became pregnant again in 2008. I was very worried but the pregnancy seemed to go well. Jack made an early appearance at 35 weeks, but he seemed healthy and happy. And we were extremely happy. Until we found out at 4 months old he had a congenital heart defect called Tetralogy of Fallot. The only way to fix it was with Open Heart Surgery. I couldn't believe it! So at 5 months old little Jacky had his OHS.
Now for another surprise... this time a good one lol. We were expecting another baby! Jack was only 9 months and we were in shock to say the least. As I neared the end of the pregnancy we started to worry about Jack's development... So he started Speech therapy at 15 months old.
Evangeline was born September 2010 and she was and is perfect! But I think my two boys are perfect too! Just a different kind of perfect. As Evy was blending well into our family, it became more obvious Jack was the 'black sheep'. Now we are on the journey of Jack being diagnosed with Autism Spectrum Disorder.
I know this is a heap of info to read in a first blog entry. My apologies. But I needed a kind of nutshell thing to keep you up to speed as a blog further. I will hopefully have entries organised in themes etc. So you don't have to pour through each individual entry if there is only one or two things you are interested in reading such as info on Cerebral palsy or Depression or Open heart Surgery or... you get the idea.
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