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.

Those gifts for THOSE occasions...

No I'm not talking about birthdays or Christmas or even Valentine's Day (dirty minds can be left at the door for this post). I am actually talking about 'gifts' that are given to people under non celebratory circumstances...

When I was diagnosed with Type 1 Diabetes and spent a week in hospital, I had many cards sent to me, but I also had a number of gifts too. Obviously not chocolate or any sweets, instead I got a few angel type ornaments. I guess people were trying to show me that I was going to be 'looked after by the angels' and it was a lovely gesture. I was 15 years old after all. And I did love and appreciate these presents.

Giving presents at non celebratory times is just not something we think about until the time comes, and we decide to give someone something in their time of sadness, worry or fear.
Of course there is always flowers. But somehow flowers don't always express what we want to convey..

When my mum was diagnosed with Pancreatic Cancer, the mother of my boyfriend at the time had given my mum a gorgeous little bear called 'Precious'. And that bear still holds so much meaning to me. As does another teddy bear we were given at the time named Toffee. Toffee travelled with my dad, sister and I around the world after my mum had passed away, we took photos of Toffee with us in all sorts of landmarks. I guess teddy bears signify comfort, cuddles and snuggles, and I believe they can be a beautiful offering in the right circumstance.

Today I gave a gift to a lady whose daughter has just been diagnosed with Autism. It was an Autism Awareness bracelet. Ok so she probably thought "Bottle of gin would've been better" hahaha, but no, the look in her eyes and the hug definately told me it was a good 'non-celebratory' gift. I think there are times, like when a diagnosis is given, it is sometimes a lovely gesture to give a little sunshine rather than a look of sadness or pity. I know material things don't make up for what has happened or is happening, but they certainly can puff up the spirit a bit. 

When I lost my baby Dylan, the hospital gave me a little knitted outfit that the nurses took photos of him in. That knitted outfit is such a priceless gift.   Parents who lost their babies many years ago were never given any momentos. But thankfully an amazing organisation/registered charity called Little Angels Memory Boxes have been sending out their own form of 'non-celebratory' gifts to recently bereaved parents in Australian hospitals. I wish they had been around over 3 years ago, but luckily I had that lovely team of nurses who put together a little package of photos and the outfit for me.

All the 'non-celebratory' gifts I have received over the years I have kept and I still look at from time to time. They bring back memories, make my thoughts and feelings about that particular experience valid,  they also remind me that people care for me, love and support me. 

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.

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..

..Dear Diary...

I decided that today I would share a few extracts from one of my diaries. But there is a reason for my choice in which diary and what dates. You see tomorrow is the 24th of May, and it will mark the 13th anniversary of my mum's passing. So I have chosen the diary from when I was in my late teens. I haven't opened it for awhile and it will probably be quite confronting for me and possibly for others. But I think it may help deal with all those emotions and thoughts that come up at this time every year.
So here we go...
Saturday 21st February 1998:
Mum got her results from the tests she had on Thurs, it said the liver & kidneys were fine but the pancreas has an enlargement at the head & points to carcinoma. We freaked & called Dr T..., so mum & Tam drove to C....... at 6pm to get Dr T... to explain the results.
I called dad who had met up with them in C..... He wouldn't tell me anything on the phone, so when Tam called (came home seperately) I asked her to tell me what's going on. Dr T... said we have to treat/view it as cancer of the pancreas at the moment & hopefully prove it wrong. Mum's going for some more tests on Monday- CT scan and chest X-ray. I was fully shocked.
When Ma and Pa {this is what I called my parents sometimes) & Tam came home I found out if it is Cancer of the Pancreas & it hasn't spread yet they have to take out the pancreas & mum will be on enzymes for the rest of her life or if it has spread (namely to her lungs) she will die. I can't believe it! I feel sooo bad for mum, poor thing is sooooo afraid and upset. I love her sooooo much and would lose my mind if she dies.

Well that was hard to type. I'm shaking a little. I totally forgot about that. I didn't know that was the exact date she got her diagnosis.

Monday 23rd February 1998:
Mum went for the CT scan today & the result was that she has Cancer of the Pancreas, but it hasn't spread to any other organs. So they have to remove the pancreas & give chemo to mum. I guess it's better than her dying but I'd be shitting bricks if I had to have an organ removed. I love her soooooo much. I hope she's not too scared and that everything goes well.

Once again I totally forgot about this. The hope.

Sunday 8th March 1998:
We've been visiting mum everyday, she thinks this is the end. i try & tell her it isn't. Mum is on morphine (but it doesn't entirely work). On Fri I stayed the whole day with mum, except she had a special test at 2pm (which went for 3 hours). She had to be taken to the Nuclear Medicine section & injected with a special dye, so i couldn't stay with her. So I walked to westfields & spoke to Mrs M... on the mobile phone.
Yesterday Dad, Tam, C.. & I went to C.... to do shopping & buy mum a few nighties. Mrs M... gave us a dinner to keep in the fridge till we need it, she also gave a present to mum > a tiny teddy bear named 'Precious'. I gave Mrs M... a hug & thanked her for her help.
People have said they've been praying for her,I have prayed also but feel praying will do no good.
On Monday we'll find out what's happening with mum.
There's a girl in the ward named Janelle who's 16 years old and has Acute Leukemia (a fast occuring thing, pretty fatal). she was crying on monday night & has had a lot of visitors (high school friends and teachers). It is sooooo sad. It's such a depressing ward > ill people, vomit noises etc etc. Janelle had pretty below the shoulder length hair when I first saw her on monday but yesterday I saw her with a short boys hair cut looking much more ill.
Mum's looking soooo skinny/bony, like she's fading away. Tam is breaking & so is dad. I reckon I'm just in shock, acting strange and having weird dreams, yesterdays dream had the theme of death (with a written description of what happens in the last few mins of dying).

Tuesday 10th March 1998:
Yesterday evening Tam & I drove to L... Hospital. Mum told us how the P.E.T scan went. There are some 'warm spots' in the liver & near the collar bone, doesn't look hopeful & mum has to have another ultrasound. We (Ma, Pa, Tam & I) went outside, I hugged mum as we both became tearful. Mum's shaking in fear. it hurts to see her like this. I don't think it's fully hit me yet.
Tam & I had a little catfight over nothing cos we're both vented up with anger. but both apologised.
This is like some awful nightmare.

Night mare indeed. It is painful to read and I just want to go back and do something more helpful for my mum. I feel I should've hugged her more at that time. I shouldn't have left her side, ever.

Wednesday 11th March 1998:
Found out that they can't operate, the cancer is in another place as well. Mum's starting chemo tonight. There's a 1 in 5 chance of it working & mum living.  It's so shocking, I can't believe it! she was meant to live until over 70, see me grow into a woman, get a job, get married & have kids. Argggggh. I cried for 10 minutes straight just thinking about it all. This fucking sux! There's like a death sentence on her. She's the best mum in the world. I love her soooo much!

Thursday 12th March 1998:
I just finished watching 'Oprah' & it was about keeping a gratitude journal, how it helps you appreciate the day, fulfills your life, makes you positive, instead of focussing on the bad. I will try to do the same here, focus on the things I'm grateful for but also what happens in the day or week (neg or pos). Oprah used to keep a diary from 15 years old onwards, but it was filled with negative things, but for about 2 years now she has kept a gratitude journal which contains 5 things you are grateful for in the day. So here goes...
1. I got to be educated today, went to school
2. I really enjoyed breakfast
3. I actually enjoyed cleaning the house, purifying experience
4. Mum came home, i'm glad to have her
5. Thanks for microwaves. i made dinner of deb potato & peas

Ok so I need a break for a bit. I will post this and go have a shower. Thank you for reading this far. It is a journey so inexplicable, but I hope to have helped someone, even if it's myself, in sharing this.

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.