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 with special 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 I don'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

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!!!

once again I don't know what to title this post....

I don't even know where to start.
The last couple of days I've been teary. I've been stressed. I have had moments of wanting to just flop down on the ground, splayed like a bunch of boiled spaghetti, because I have nothing else to give.
Mental exhaustion.
I'd stand at the clothes line out the back, drop the clothes and bawl.
What the hell was happening to me?
I am usually Little Miss Super Positivity.
My last blog post was on 'Inspirational People' for crying out loud and how I am trying to emulate that....
Well we are all human after all.
We all have our breaking points.
This was it. My little breaking point.
Nothing major. I just reached my limit for the moment.
And you know, I am okay with that.
Everyone has that moment. Several times.
I know this isn't going to feel like this forever. I am lucky that I know this.
It is just part and parcel.
It's "going through the motions".

Yesterday I realised these feelings had a strong connection to what I was to go through today.
You see today was Mr Middle aka Jack's C.A.T's assessment (Child Assessment Team) at the hospital. Funnily enough we had done this before, with Liam. But with Liam it was a different kettle of fish. A different experience altogether. We knew with Liam the outcome was going to be: "Severely/Profoundly Developmentally Delayed" and that it didn't mean anyone knew what was going on in his head, it was just a 'surface observation'...
With Jack this assessment meant something very different. We were going in to confirm in a formal manner his Autism (expected) and where he is developmentally (we had no idea what to expect).
Prior to the assessment we had to fill out a myriad of paper work asking questions about what Jack can and can't do, what kind of behaviours he displays and so on. This was a little heart breaking (as was Liam's). It really made you dissect your beautiful child and display all aspects. Something a majority of parents never get to experience and thankfully so. It hurts. I mean I am so grateful and so proud of my children. But no parent should have to analyse every little aspect of their child's being.
So after filling out this paper work I was emotionally drained. And it showed.
Luckily I have my Knight in Shining Armour who has been so loving, caring and supportive. He ordered me to go out and have lunch yesterday.. Sushi.. my favourite.  But even a 'break' from things doesn't remove what is happening, and I had a few tears on my sashimi.
This morning I woke up with a positive refrain.
No matter what, Jack is my awesome Mr Middle.

When we got to the hospital we met up with a very amazing support person, the lady who runs our special needs playgroup/support group. I have known her for over 5 years, she is a miracle worker. We are blessed to have her in our lives. She definately calmed my nerves.
Once we entered the assessment room we were greeted with a number of people: the paediatrician who runs the CATs team, an Occupational Therapist, a Speech pathologist and a Social worker.
All very friendly, approachable ladies.
We discussed 'histories'... my pregnancy with Jack, his birth, his open heart surgery, the first signs of Autism...
There was a decent history. Reliving things can be hard.
Then it was time for Jack's actual assessment.
Hubby and I left the room and watched from a 'viewing booth', so Jack couldn't see or hear us, but we could see and hear him.
It was actually beautiful to watch. Jack without me, what he does, how he reacts. Sometimes it seems like Jack and I are an extension of eachother. We were very much separated at this point.
The paediatrician gave me a running commentary of what they were assessing. As well as adding some 'lighthearted' conversation, which I appreciated ( not for everyone, but I am a fan of not being so serious all the time).
There were moments I was truly blown away by what Jack was doing. Magic moments. He fed a baby doll with a spoon! He must be 'watching' me when I feed Liam, even though he seems like he is in his 'own world' half the time. He completed a puzzle without any problems, when usually he would get half way through and go 'wander off' and find something else to play with. This was due to the fact the room had nothing much in it. No distractions. Jack could do so much if all distractions in life were removed....
Each skill he displayed that was new to me, had me in a little celebratory happy dance. I was thinking about Jack's 'Personal bests' rather than whether another child of two years old can do it. It was a terrific feeling.
After Jack was assessed we were sent out for coffee for 30 minutes so the team could discuss and analyse the findings. During that coffee break my husband and I were beaming. Jack had done so well. We were discussing how he would probably be the next Mark Zuckerberg or the scientist who finds the cure for cancer. Even our wonderful support lady said "Jack has so much potential, it's just the Autism is in the way".. I knew what she meant. The sensory issues, the fixations on patterns and sensations were 'slowing him down'. If we cut out the 'noise' we could tap into his mind and educate him.
Thirty minutes flew. Before we knew it we were back in the room.
Yes he has Autism.
But he has so many strengths. Lots of potential.
I said "I am ok with the Autism".
And I am. It's hard. But I am. It will be hard. But as a friend texted me the other day "... it will be worth it".
They kept checking how I was reacting.
I was fine.
His development is overall moderately delayed.
I was somewhat fine.
Until it came to me. My well being. How was I going to cope with this life? I am coping fine. But the realisation that I am a huge part of this equation. That anyone in this situation needs to be helped. The paediatrician was quite adament that I accept all help available. Not that she thought I couldn't handle it per se. But this isn't the 'norm'. This situation of having two children with special needs of two completely different types is not a typical experience. The amount of therapies, the variety of equipment needed, the specific attention needed for each child (and not to forget Evangeline who needs attention too amongst all this hoopla) That is what broke me down a little...
I liken it to being at Sizzler. I have a plate and someone else is filling it up. They keep piling it on. Most of it is yummy and delectable, and there is a few items I could do without, but I will swallow it all down eventually. That is the thing: It is overflowing, but I have to remind myself I can get through it, I just don't need to eat it all right now. One bite at a time.
This week I do feel overwhelmed.
But I know that in the following weeks I will get my mojo back.
Then months later I may feel overwhelmed again.
It is going to happen. I am ready.

*disclaimer: I am lucky. I know this. I am so proud of my children. I am lucky to have them. I am grateful for so much. But this is me, being honest, truthful and raw.

A poem I wrote...

The Autism Journey

My boy ambles along on a different road,

I can see him over the way,

I walk each step across from him,

Every hour, every day.

For now we walk on different paths,

but we are on a parallel route,

I am building a bridge over to him,

With love, understanding and truth.

As we step closer and closer still,

I hold my breath with anticipation,

My heart fills with pure warmth, joy,

Each foot fall nearer brings true elation.

I am blessed to be on this path,

The journey has taught me so much,

With the love and support of many,

Our world's will perennially touch.

Yeran B. copyright 2011



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.

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.

Vaccinations...

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.

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.

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....

Fanfare and fireworks...

Ok so I don't know what I expected at that moment when our paed said Jack has Autism. Was I expecting fireworks? Trumpets? Some dudes to jump out of the side door yelling "surpriiiiise!". Nope, it was so fricking unceremonious. As are all these defining moments in our lives... In fact Liam's diagnosis was given to us in that exact same room, with no fanfare, no fireworks and no "surpriiiiiise!". Although I remember the Doctor handing me tissues. There was no tissues today. Strangely I was laughing, Byron was wrangling the kids, Doctor was shaking his head with a smile.
In fact I was officially diagnosed with Type 1 Diabetes in that same room too, by the same doctor. Although my memory of that room on that day was darker. How funny. Not so dark today. In fact today was exciting because Jack started 'roaring' like a dinosaur and I felt and still feel quite proud about that. He picked up a dinosaur toy and roared. Makes me smile. May not be much for some people, but damn he might as well won the Noble prize according to me.
I have been told that after diagnosis your child is still that same child. Nothing has changed, other than access to more services to help. But there is a change. A change that only those who have gone through this can understand. I am not saying it's a negative change, but things will never be the same and that is a fact. These things can not be undone.
Please don't get me wrong. This is not doom and gloom, but it is something that changes your life and shapes your being. I am speaking for all who have a child with 'DIFFABILITY' . And in my case, more than one child with 'Diffability'. The crazy thing is, I'm not the only one with more than one child with 'diffability'. I have several friends who are in a similar boat. And these people are probably the last to whinge and complain. God bless them.
Thanks for reading these posts tonight. You are now on this new journey with me *cue evil laugh* , now you must come along and enjoy the ride....

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..

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.

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.