Night time. The best time. For connections...

The most important thing to start focussing on with a child who is Autistic is connections. Getting that eye contact. Building a strong relationship. Showing them they need other people, not as objects or tools, but as fellow humans, who they can share enjoyment and experiences with.
With Jack we are developing this sense within him through a loving and caring approach. Yes we still give him boundaries, discipline and consequences. But we join him in 'his world', sharing with him what he finds joyful and exciting. And yes, that does include spinning objects, spinning himself, lots of jumping, hand flapping and so forth.. Just imagine a grown woman jumping up and down, repeatedly saying "aaah aaah aaah" a million times, spinning around, and 'upping the enthusiasm' 200%.. and then some.
Over the last 6 months I have discovered that at night time, during the bedtime routine, Jack is most open to letting me come into his world and then letting me pull him a little into 'our world'. Each night for about 40 minutes to an hour I have spent an intense one on one session with Master Jack. No distractions. No toys. Just mum, Jack and a book. Each night we have connected a little more. The eye contact is amazing. The smiles, that aren't just random, show we are having a shared experience of joy and giggles.
I was quite surprised that the evening was the best time for my toddler. I mean most kids have had enough by beddibyes and can be quite tired, exhausted and end up being stroppy. But not my Jack. He seems to have a second wind. And now I know this is the best time to 'catch him' I have made sure that I have a good uninterrupted block of an hour so we can make the most of his enthusiasm for 'meeting me half way'.
It certainly has paid off! For a child who had no concept of 'pointing' (a huge red flag when diagnosing Autism), Jack has these past two nights pointed to several objects/things. And the even bigger news is that he was saying what he was pointing at!! I have been on cloud nine for the past 24 hours!!!  I know for most parents this isn't really an achievement to crack out the champers for... but for me and many other parents of children with additional needs this is a cause for party poppers, party hats and cocktails fairy bread !
My night times are where I meet my little man on the 'bridge' between our 2 worlds. And on that bridge magic happens.

I don't want to 'cure' him...

There are many views on Autism: how it might be caused, what treatments to use, possibility of curing... From what I have read so far and from what I am experiencing I can say "I don't want my son's Autism 'cured"... *gasp, shock, horror* yes you read correctly. There are several reasons why I make this statement. The main reason comes from a video I watched of Temple Grandin giving a talk on Autism. She pointed out that if we had discovered a cure for Autism that many of the world's geniuses would not have in effect become geniuses and they most likely would not have invented or discovered the things they did. I see how focussed Jack is on certain details, dismissing all the social cues, and I am sure that his mind is capable of so much! But having said that, it is important that he get every help he can so he can function in 'our world' and use his talents in the things the rest of the world needs. Basically what I'm saying is we need to 'harness' a person's Autism, make it applicable in society, help each individual reach their potential and most of all enjoy life (the way they wish to... even if that means spinning themselves around until they fall over). Rather than completely extinguish that fire.

I love every part of Jack and that includes his Autism. His Autism doesn't make him who he is, but it is part of who he is. I also have a sneaking suspision that I am somewhat Autistic. I mean we all say that we have Autistic traits, but I am pretty sure I am on that spectrum (husband will agree, he likes to 'blame' me for Jack's ASD and I happily 'take it', I am proud to say Jack takes after me, that he thinks differently just like me).
I think it's when we embrace something and 'fit it' into our life that we can then make it 'work' , make it a joy rather than a battle.
This most likely won't be the last post on this topic *insert knowing and nodding winky and very smiley face* I plan on covering much more, but I am quite satisfied with what I have talked about tonight.  Although I will add that Temple Grandin's talk I linked above is a must see, so if you haven't watched it yet, please do! It's not only applicable to those with children who have Autism. It is applicable to us all! We all have minds that have 'specialities'. A topic I am passionate about. One I studied at university: Gardiner's Theory on Mulitple Intelligences. Which I will most likely discuss at a later date.

No regrets...

Ok so on that train of thought, I want to quote a bizarre movie- Vanilla Sky.. "Every Passing Minute Is A Chance To Turn It All Around" . This is my way of ensuring I have absolutely no regrets whatsoever. Instead of looking at what I could have done, I can use my energy to figure out what I can do right now, right this moment to make things the best they can be. 
This has certainly come about since finding out about Jack's ASD. There have been moments where I have focussed on what I should've done differently with Jack in his first 2 years. Those moments cripple me, because I know I can't go back in time. It is also well and good having these thoughts with all the hindsight... We had no idea Jack could have Autism. 
Now I have my Vanilla Sky quote embedded in my head, reminding me that it is the here and now that I have an influence over, I can look at all the ways in which I can make things 'better' for my family. And with that in mind I had a huge light bulb the other day....
My husband had been going on about "When I make my man cave.." and I'd laugh and say "Yeah hun whatever". But this time I realised we could make my hubby's dream come true... but he'd have to wait to use it hahahahaha. My idea was to make the "man cave" but it would serve the purpose of a therapy/play room for the two boys in the mean time. You see we have a very small house and it is not designed for a child with CP or a child with Autism really. It's cluttered, it's cramped, it's only three bedrooms (and yes there is five of us!). If I wanted to do the Son-Rise Program with Jack we would need to have a play/therapy room. I don't want to have any regrets. I don't want to say "If only we did that Son-Rise Program Jack would be able to function better in society".
So my goal for this year is to get this 'man cave ' happening. Any ideas on how to do it cheaply, but safely would be very much appreciated!

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.

Mother Guilt: it disables me...

At the moment I am suffering the hugest bout of Mother Guilt ever. And it's crippling me. I want to do everything for my children, everything they need and I find myself paralysed. I don't know where to begin. I worked so hard with Liam when he was first diagnosed. I burnt myself out in that first year. There was so much to focus on... his mobility (starting with rolling over... still can only just do that now), his muscle length and strength, his eating, his talking/communication, his hand play, his sitting, his drooling. Amongst this I had to make sure everything else was running smoothly including my diabetes.. I decided after a year of Liam crying and screaming through therapy sessions that I needed to be more gentle on Liam and myself. But this has come back to haunt me.. I was having a conversation with a lady about Liam and where he is at. She asked how he was mobility wise and I said he still isn't mobile yet. She responded with "How strange, I mean there's that boy R.... that was only crawling when we first met him and now look at him walking everywhere". I was floored. Was she implying that if I did more therapy with Liam he would be walking by now??? (Besides the fact the 2 boys have totally different diagnoses) I felt sick to the stomach. I panicked and thought yes maybe if I ignored Liam's cries and pushed him every day and forgot about my own life and my own needs, that maybe, just maybe he would be walking today.... Then I realised that this is a futile thought pattern. And also if I had done that we would actually be a miserable family with a child that can walk (or might not walk.. you can never know). Besides my main goal was and still is for Liam to be able to communicate everything thats in his mind. A goal that I think is very realistic and we will focus on for as long as we need to.  Famous singer/songwriter/musician Neil Young also dealt with these struggles with his son Ben who has the same diagnosis as Liam, here is an interview and it's 2nd part I read that comforted me and had me in tears at the same time.
My mother guilt will always be there, it will just peak and trough over time, as most mums feel it and have moments where they question how they have been as a parent to their children, whether they could do better and so on. Yes it's normal, but it's not productive if you end up just sitting there staring into space thinking about it.
Now I have three children, each with their own definate individual needs and some of those needs are conflicting to the other 2. I realise the enormity of my task as being the best mum I can be to my 'three muskateers' and this has me quite anxious and as I said before it renders me paralysed at times. I am thinking maybe I need to let myself be paralysed for a moment and do that crying thing people keep telling is so good for the soul hahahaha. And then I can pick myself up, dust myself off and rock this!!

irony...

I am guessing this is ironic...
When I was pregnant with Jack I mentioned to some people that I felt bad Liam would be the one with a disability in the family and that he would have to watch his "normal" sibling grow up and develop before his eyes, without needing Doctor's appointments and therapy appointments. At one of my 3rd trimester ultrasounds it was picked up that Jack had 'positional talipes', so I felt Liam now wasn't the only child in our family who will need some physio therapy and I was strangely happy about this.
At a few weeks old my little Jacky had plaster casts put on his feet. That was what I thought to be the extent of Jack's 'problems'.
At four months old Jack was diagnosed with a 'hole in the heart' by our paediatrician. Once again we were ok with this. Many babies have this and it usually fixes itself. It didn't even register on my worry scale at this point... But we were sent to our local cardiologist just to check what the extent was. At this appointment we were to find out Jack has a Congenital Heart Defect and the only way to 'fix it' was Open Heart Surgery. At this point I thought "yes Jack, you have now proved that Liam isn't the only child with something different in our family and you've surpassed him in giving us a freak out!".
Nowthat Jack has his diagnosis of Autism, I can safely say Liam will not be alone in being the kid who has therapy, doctor's appointments and the rest. Oh but the irony of my earlier worries I spoke of to others is so apparent right now. You have to laugh right? Or you'll cry....

The Brain..

What an amazing thing the brain is..
The fact that we know so little about it and what power it holds.
I often think about Liam's brain and how it has been damaged and how that effects him and his life. But also what we can do to change that. I've read up on intensive therapy and Hyper Baric Oxygen Therapy and every kind of therapy. It's amazing how the brain can actually change, it is not fixed. But I have also weighed up the use of intensive therapy in a person's life and the quality of that life. Do i really want to push Liam to the limit? Take away the fun of his everyday existence. Ok I can see this will be a scatterbrain post as I want to talk both about the complexity of the brain as well as therapy and it's effects on the person and their family.
I think this post is leaning now towards therapy versus everyday living. I would like to think I have struck a balance with Liam. We try to incorporate therapy where we can but I would say the joy of living is of the utmost importance in our house. Liam is a happy soul and I don't want to push him to the point of no longer being that happy soul. People may argue I am not leading him to his full potential. But what is that? It seems those who are able to 'reach their potential' end up being bitter and disillusioned anyway. Depression is so common these days that I worry if my children were to be 'normal' they may suffer from depression. Is that a silly thought? I don't know.
I've also had a few wines, so this post may get deleted in the morning hahahaha. But at the moment it totally makes sense and is relevant...

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.