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'.

Saturday, 25 June 2011

sometimes music taste says a lot about a person...

I just wonder what it says about me...
I am known to love a very wide variety of styles and sounds.
Do you think listing your top 10 favourite "Albums of Your Time" could really represent who you are?? Well I'm feeling pop/rock reflective tonight. So here goes my Top 10 (in no particular order, because that would be too hard to decide on):
  • Beastie Boys        'Hello Nasty'                           1998
  • Pearl Jam             'Ten'                                       1991
  • The White Stripes 'Elephant'                                2003
  • Radiohead            'OK Computer'                      1997             
  • Outkast                'Speakerboxxx/Love Below'   2003
  • The Killers            'Sam's Town'                         2006
  • The Prodigy          'Their Law'                             2005
  • The Strokes          'Room on Fire'                       2003
  •  Garbage              'Garbage'                               1995
  •  Nirvana                'Nevermind'                           1991
I do have a few favourite 'Soundtrack' Albums, but feel they don't go on the Top Ten Albums, instead they can have their own little side category (total cop out I know lol, but I want to add a few more of my favourite 'sounds'):
  • Reservoir Dogs
  • Spawn
  • Dawn of the Dead (remake)
  • Trainspotting
  • Pulp Fiction
There's probably a whole heap I've missed. But these are the ones that come to mind tonight.
Now my choices were made by thinking about the albums that I have listened to many, many times and am still not sick of. That make me feel good. Make me smile. The ones that make me do a roundhouse kick in the air 'cos I feel like I could conquer the world. The ones that make me flip my hair and pout like a sexy minx, making me think I'm a sexy she-devil. And of course the ones that contain music that make me cry beautiful tears.
Ok so maybe I shouldn't limit it to 10 (or the extra 5 on the soundtrack list), because these two lists don't even begin to touch on my extensive music choices. But this is definately a good sampler *insert winky face*.

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: 
  • 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)
Well funnily enough I had already been somewhat doing these techniques for awhile and yes I had already noticed improvements in Jack. But now is my chance to step it up a notch.
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.

Sunday, 19 June 2011

oh God...

They say not to discuss religion, politics or sex with friends. And it's true that it can cause great debate and sometimes end friendships. But tonight I can't help myself. I want to talk about God.
I am not religious per se, in fact I don't have a denomination, but I do believe in God. It's funny because my husband doesn't, yet we are married, in love and agree on so many other topics, so I don't see a problem with our differing views on God. I respect my husband's beliefs and I never push mine onto him. As I would never do to anyone.
People's relationships with God can change over time and I have seen people rocked by experiences and situations where they question God, or even God's existence. But in my case those times that are tough, that are scary, that are sad, I find myself asking God for help and not shunning God for what is happening. I realise God is most likely watching, waiting for me to make my epiphany. I am learning from all these experiences and I thank God for giving me the opportunity to brave them and rise above them.
I have heard people ask "Why would God do this?", "Why would God have this person die like this?" or "If God really exists, why would he hurt the good people?". Well the truth is... we all get hurt. If we didn't we wouldn't know pleasure, happiness and joy. Life would be the biggest plod along, numb journey. And the most obvious thing is... Death wouldn't exist if there were no life. Decay is just another part of the living condition. EVERYTHING decays. Yes a lot of it seems unfair... but who said life was meant to be fair?? There is no fair, no just. Some people are given many challenges in their life and others just roll on with a few hiccups. That's the way it is. No rhyme or reason. I was having a chat with my friend K and we were likening  the things that have happened in our lives as cards in a card game. Everyone is dealt a different hand. So yes there are some people who get the Kings or Queens, others get 3's or 4's. But it doesn't mean those who got the so called 'crap cards' can't 'win'. It's all about how you play. It's all about viewing the cards in a different way. I feel I am rocking the hand I got dealt *insert winky face*. But I got a bad poker face hahahahaha, I've got to learn to wipe this smile off my dial!
This isn't a post on getting people to believe in God or whatever. I am simply making an observation. For me God has opened my eyes on a grand scale. I am never, ever angry with God. In fact I am grateful that God has given me the life I have been given. I am not ignorant, I am aware. You can only be super grateful for that. 

Thursday, 16 June 2011

Anxiety and panic...

It comes and goes in waves. I could go weeks without any form of anxiety or panic, then BAM! I start to worry about something such as an ache or pain, turning it into something more sinister in my mind. Then it takes over my entire being and I end up a wreck.
The last 2 days have been focussed on my fear of a heart attack. To some that may sound far fetched: a 31 year old woman at risk of cardiac arrest? no way. But unfortunately it is yes way. I have type 1 diabetes and it is a fact that heart disease is one of the many complications that can affect a diabetic. And the scary truth that cardiovascular disease is the leading cause of death in people with diabetes is starting to hit me bad at the moment. I am scared s***less about this. I have no idea why I have all of a sudden focussed on this. Which makes me wonder if it's intuition and it's something I need to follow up on or whether I am just letting my neurotic crazy head get the better of me. Either way I have become proactive about it and am getting all the necessary blood tests done and an ecg.
I have a feeling my worry is born from being a mother. I would not have thought of these worries 10 years ago. I need to be 100% healthy for my children's sake. They need their mum to be able to care for them, and not just in that generic way. I have Liam who literally needs me for everything. EVERYTHING. It would be selfish of me not to be selfish lol. That is how I have to look at it. I have to put my diabetes management first so I can put my children's needs next. If I don't then I won't be able to do ANYTHING for my children. This is hard as a parent, because we naturally want to put our children first and everything else follows. I am going to have to re-evaluate this...
This is also applicable to my mental health. I need to be gentle on myself. This seems to be another aspect parents find difficult. Us parents tend to push our mental health needs to the side and hope it will all be ok. But that doesn't serve our children well. We need to be stable for our children to feel stable. At the moment I am not seeing any professionals for this. In some way I would like to, but then I think about the bad experiences I have had in the past with counsellors (how some had made me feel worse!) and I decide against it. Instead I choose to speak about it with my husband or a friend. This is an important step for anybody with mental health issues to do and one in which fellow blogger Random Ramblings of a Stay at Home Mum is very adament about. So please if you are suffering from depression, anxiety, fear, panic, deep worry... SPEAK.  Words outloud are in a safer place than words stuck in your head, that can swirl and whirl, fester and feed on further fear and darkness.

Sunday, 12 June 2011


Just watched a segment on Australia's 60 Minutes about the debate on whether we should vaccinate our children or not. I can't believe it is even debateable! The pros clearly out weigh the cons, and even then I'm not sure what the cons are.... I mean I am sure there are a few cases of 'adverse reactions' as with any drugs/medications, but the possibility of diseases that have been pretty close to eradicated for decades now, coming back and taking the lives of many children, is a great reason for keeping up with immunisations.
The whole debate on whether vaccines cause Autism is laughable. And even if it did... I would rather a child with Autism than a dead baby. Now I can say that!!!!
I can't even imagine what those parents went through whose babies died of whooping cough. My heart aches for them. Watching their precious baby videos, seeing how healthy these little bubbas were and that within days they were on life support. One mum said "I would love to hear my baby cry again". And sure enough Evangeline cried tonight and I was so happy to hear it. Our babies, our children, are so precious. We need to protect them. We need to keep illnesses like Measles, Mumps, Rubella and Whooping Cough as dormant as possible, if not completely eradicated.
Just had to post this straightaway. It is something I'm passionate about.

Friday, 10 June 2011


Oh do I loath judgement... although I must admit it is all part of the human experience. We all judge to some degree, even if we don't think we do. I am not religious per se, but the only being/thing that can judge is God. Yet we all have preconcieved notions of how things should be and what we should be doing and how we should be reacting and so on and so forth.
The truth is NONE of us should judge another human being until we are PERFECT and believe me nobody is perfect or ever will be. We all make mistakes, we all do things that are questionable, and so there is the hypocrisy in our judgement of others.
As I grow and develop, as I strive to be the best I can be, I try to ensure my lack of judgement on others. It is a difficult task as I think it is ingrained in us from the moment we are on this Earth. Almost like a reflex action, a knee jerk reaction. 
It is so easy to look at someone's situation and say "Oh I would do it so differently". But you are not them. You have not experienced every single experience that person has had. You do not have the exact dynamics of that persons life, their relationships, their moods, their feelings.
I think the path to being a happier person is to let go of judgement. When I am concious of my judgemental thoughts, I quash them and try to think of a positive spin on my thoughts. Give people the "benefit of the doubt". It surprisingly feels good! It's a refreshing change as opposed to continuing on that judgemental line.
Next time you catch yourself thinking "Oh I wouldn't do that" or "Would you just look at that!", take a step back and change your thoughts. It doesn't hurt. I promise *insert that usual winky face*.

Thursday, 9 June 2011

Apples and Oranges...

To compare one human to another does not serve a great purpose. Neither does comparing one person's experience to another. Not only does it serve no purpose, but you truly can not compare at all. There are a multitude of factors that come into play, yet there is no 'formula' that will put together all the factors and create a 'rating' or some such. For example: the grief I feel about my mum's death cannot be compared with the loss of my baby Dylan... it's Apples and Oranges. I ache when thinking about either of these, but they are different, yet the same... Difficult to explain..
I was discussing with a few people about the death of loved ones and how some people think that in the case of a slow death like Cancer which gives a chance to say goodbye, is 'better' than a shock instant death nobody saw coming. Death, whether predicted or surprise, is sad, scary, awful and horrifying. No one person's death can be compared in measured grief (and I must say grief can not be measured), yet I think there are a lot of people who don't realise this. They think what they have experienced is worse than anybody else's experience. And personally what does upset me is that going back to the first point I raised in this paragraph where people have said to me "You were lucky to say goodbye". WTF?? Saying goodbye to my mum makes her death less painful?? Not at all. And I'm not saying it would've been 'better' if she'd died in a car accident. There is no such thing as a 'better' death. It is all painful, and the pain never goes away, we just become 'better' at 'managing' it.
The same can be said of the age of the person at their death. Whether it is a still born baby, a teenager, a fifty year old or a ninety year old. All these deaths leave family and friends behind. People who loved, cared and supported this being.  All these deaths cause distress, grief, anger, upset and hopelessness. You cannot compare. Apples and Oranges.
Sorry that this post so far has discussed a lot of death. I will move away from the morbid..
Our children are Apples and Oranges. Every single one of them. Yet parents can't help but compare and I feel it takes away from the magic that is each of our individual children. I mean it is nice to be proud and announce achievements of our off spring, but sometimes people take it a bit too far, not realising the people they may be hurting in the process. I felt this for the first few months of Liam's life, when we didn't know Liam had Cerebral Palsy. I had a friend whose child was born a month after Liam. We would meet up every few weeks for coffee and a playdate. As time went by my friend would be sprouting off all these awesome things her son could do and I was left feeling sad and down. After a year I couldn't watch as her son developed at great speed and Liam was still my little baby, so our playdates dwindled. But luckily I had the Special Needs playgroup we went to, to feel 'normal'. Which is where I still go to this day, my place of solace, my 'safehouse', because there I feel my life is 'normal' and my children aren't 'different'.
One subject I am confident I know you can't compare.. 'Diffability'. With both of my sons and their diagnoses I am feeling all the same emotions, but you cannot compare the two.  A lot of people may say "But Jack can do more than Liam, his diagnosis is not as bad"... err what?? Jack is Jack, and Liam is Liam. I love them equally and will have my moments of grief with either when those gentle reminders of their 'diffability' pop up, just as much as the other. The difficult aspects of their 'diffability' cannot be compared either, as with any person. A lady once said to me "Jack will be more difficult than Liam".. huh?!? How do you figure that? They are both male so I'm going with the whole, they are both going to be difficult hahahahahahahaha.  I will also celebrate their achievements as individuals, with no comparison to each of them or to anyone else. I call these PB's.. personal bests. I try to do this for myself also. So instead of thinking: "Oh but so and so can do this or that, why can't I?" , I shall focus on what I have achieved and what I can attempt to achieve that I'm comfortable with. No need to 'keep up with the Joneses'.
Ok so I hope this post helps in letting know that you are all important, you all have lives that are filled with significant experiences and that not one of us is the same. Oh and it is crap pointless to compare.

Sunday, 5 June 2011

Good friends... of the opposite sex...

I have a very good friend, that I'm close to of the opposite sex, and it's not my husband (although my husband is my BESTEST friend) and I trust him with my life. I have known 'J' for over 10 years and he is like a brother to me, so much so I feel comfortable enough to whinge at him, yell at him, tell him how he infuriates me and then we laugh and it's all good again. We are proof that you can be friends with the opposite sex and there is nothing 'going on'.
The funny thing is that on this discovery of my son Jack's 'Autism' I have been researching every ASD, and that includes the very hard to diagnose 'Aspergers Syndrome'. Now I did in the past joke about my friend 'J' having AS, but now that I have read extensively on it I can pretty much diagnose him with it (he ticks ALL the boxes and he even agrees with me on this). It explains so much about him and it makes those things that use to infuriate me about him become much less infuriating. 'J' only has 2 good friends, me and a mutual friend 'V'.  All our old mutual friends ask me when I bump into them: "What happened to J? I don't hear from him anymore" and I never really knew how to respond other than he's a bit of a hermit and likes it that way. But he always was the Black Sheep.... I guess it wasn't until I came along that somebody 'got him'.
And I guess that's why we clicked... I think of myself as a bit of a Black Sheep. I'm a little left field but in a different way to J. He has always been 'monotone' whereas I have always been 'colourful', he is level headed, whereas I am very hot headed, we basically balance eachother out. But at the sametime we are very much alike, we both deal with depression and back in the day we were big 'party animals'... we would spend our whole week organising our weekend. And our weekends would be huge. I seriously don't know how we did it! But I know why we did it... we were depressed in our lives. We were lost and were trying to find meaning.
I did find meaning when I met my husband, but I never left J behind. A lot of people tend to drop their friends when they're no longer single. I wasn't going to do that to J. He is part of our family.
The true meaning of a good friend or best friend: they never bail on you, no matter what the circumstance. I feel so lucky to have J and he comes through everytime. I have a vivid memory of when I was in labour with my baby Dylan who I knew wasn't going to live (I was 20 weeks along) and my husband was asleep in the chair beside me at the hospital (he was exhausted as he does long days at work). I was high on pethidine and I felt so alone. I thought J would find the somewhat funny side of me calling him up at 1am high as a kite going through labour. He answered and chatted with me for an hour. Now that is a friend for life!
I am very lucky to have a number of amazing males in my life: my husband, my dad, my J and my 2 beautiful special boys Liam and Jack.
Oh and moral to this post is... find yourself a male friend with Aspergers and you have a friend for life *insert winky face*

Thursday, 2 June 2011

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.

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.