Wordless Wednesday.... Liam boy in Miracle World edition Part Two!!

Joining Trish @ My Little Drummer Boys for Wordless Wednesday *insert big smiley face*.

Ok so I'm going to cheat and I am going to type a few words here.

These photos are of my eldest son Liam who today for the first time in his life walked "independently".

I can't thank the Cerebral Palsy Alliance/Go Mobility and The Lion's Club enough for giving my son this amazing chance to feel closer to normal. To be able to walk among us....

And somehow I am having trouble loading the video so here is the youtube link HERE

Truth Be Told...

I was having lunch with my good friend N today and we were having a discussion on the episode of a TV show called 'Parenthood'. This episode had a character, a boy with Asperger's Syndrome, overhear a conversation he obviously wasn't meant to hear... the conversation was about his Asperger's, the problem being he didn't know he had it. So it was a shocking reveal to him. Our discussion turned toward our own children and would we not tell them/hide it from them, or for them to know. I am of the opinion (doesn't mean it's the right one ) that it should be common knowledge in my household. I don't feel comfortable not letting my children know. I mean, of course Liam's Cerebral Palsy is obvious, but I also discuss it openly anyway. There is nothing to hide and there is definately nothing to be ashamed of. I feel the same way about Jack. I think we will just talk about Autism openly also, as it is a way of life, it's not a dirty word and it's definately nothing to be ashamed of. I likened it to decades ago when people could withold the information of adoption. There were teenagers and adults having the shock discovery that the people they thought were their biological parents were in fact not. I remember as a child in the 80's we all wondered if we were adopted or we would tease eachother by saying someone was adopted and they didn't know. Nowadays that doesn't happen. Children have to know they are adopted from the get-go and thus there are no surprises, it's just a fact of life and all they have known. I feel the same way about any diagnoses, the person has the right to know. But that's just my thoughts and I'm not saying if you don't agree you are wrong. We all view these things differently and that's ok.
Although having said all that.. It doesn't need to be THE topic of conversation everyday. I just want to make that clear. But when it's needed and it's appropriate I don't see why it can't be talked about openly.

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.

Planking...

Yes people, I am going to mention this new phenomenon in a post *shock horror*.

I was trying to figure out what the hell this planking was about and most of all WHY? I even began lengthy discussions with my husband over it. I was quite annoyed at him for pretty much defending it. I'd ask "why??" and he'd respond with "Why not??". I was dumbfounded that people were taking the time to do this and that it was making news. I actually brought it up at a get together of some of my friends and one of their partner's pointed out that it was obviously something worthy of discussion because 'duh' I was indeed discussing it *forehead slap*. So true. I was taking the time to think about it, ponder it, analyse it and then that evening I came home and the epiphany happened. Hubby and I were playing with Liam and by accident we had Liam 'planking'. Liam's Cerebral Palsy renders his whole body very stiff at times, especially when he gets excited or tries to move. So when hubby picked him up over his shoulder Liam immediately became like a 'plank' and I squealed "wait! let me get my camera!!!" *Click* the awesome plank photo was taken and I was hooked!
It is what it is... silly, fun (as long as it is done safely and with common sense). I almost liken it to a philosophy to live by... don't take it all too seriously, don't over analyse and just remember to smile/laugh when you can.
I also think it has something to do with a sense of community, connection and belonging. Maybe society is just becoming too disconnected and people don't know how to relate to eachother anymore, and this is a way of bringing that back? maybe not...
All I can say is, kick back, relax and then lay face down, stiffen up and get your plank on bahahahahaha.

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.

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.