Thursday, 28 July 2011

"Back in the day..."

Things were done differently "back in the day..".
There was no internet. No Facebook. No Google.
McDonalds was not in every single suburb (and nowadays there's more than one in each!).
And I remember all the stuff my mum did... and I can see how different we do things. Which leads me to feel that 'mother guilt'.
I know, I know, I shouldn't compare myself with anyone else. But because it's your mother that you are 'comparing' yourself with it doesn't seem like an actual comparison... maybe I think it seems more of a 'reflection' with missing elements and some extra bits thrown in.
I am not a MasterChef like my mum was. I'm more of a 'tear it open' or 'dial it up' kind of cook.

I am not a dressmaker extraordinaire a la my mum. She even sewed my underwear!! I can't even repair a rip with some stitches.
My mum never put us in daycare and we only did a bit of preschool. Today I enrolled Evangeline in Daycare... but there is good reason. I want to spend an entire day, one on one with Jack. This will cost me $75, but the time spent with Jack doing intensive therapy will be priceless. 
Then I realised I am not a MasterChef because I do not have the time , well not the way I prioritise lol (yikes I lol'd sorry...). Maybe in a few years I will. But for now you will not see one recipe on my blog *shock horror* - a 'mummy blog with no recipes or tips on craft, sewing etc' *gasp*. But I'm sure I am not alone. There'd have to be quite a few mums/housewives/partners out there who are just not "Suzy Homemaker". And that is more than ok *insert winky face*.

I don't remember being baby sat as a kid. I think it happened very rarely. My mum truly never had a break from my sister and I.. well not until school started. This is another thing I've had to grapple with, especially after yesterday at Jack's assessment when the paediatrician said to accept all help, especially respite. I have to realise that it is a necessity for me to have respite. Just because my mum never left my side, doesn't mean I have to do the same with my children. But I have to convince myself of that. I sometimes wish my mum had handed us over to other people to look after on a regular occasion. Maybe I would be less anxious in social situations, and more independant... Who knows. All I know is, if there is a mum out there questioning herself for 'taking a break' and 'pampering herself'... PLEASE DO NOT QUESTION YOURSELF! All mums deserve a break (and stay at home dad's, mustn't forget them!!) and I think it helps in getting yourself re-energised and most importantly being YOU! Not just you as 'mum' or you as 'wife' or you as 'partner'... but YOU as 'YOU'. Rediscover who you are as an individual.
The one thing I know I have/had in common with my mum... The love I have for my children knows no bounds. Everyday there is love. Even through our upset and our angry moments, love is the key factor behind it all. 

"Back in the day.." there was love. Today there is love. Tomorrow and for eternity there is love. Some thing's never change over the ages....... We just need to remind ourselves that our choices, the things we do, the way we do them, are always through love. Or at least should be.
As long as there is love in the house, we should try not beat ourselves up over the small things. Mother Guilt can have it's place, but like anger, it should be a very small place.

Wednesday, 27 July 2011

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.

Friday, 22 July 2011

Inspirational people...

These are the people we need to let into our lives. Hear their words. Listen to their stories. Keep our faith up. Instill hope. And share the love.
Many of the people I find inspirational are those who 'keep going' despite all their challenges and traumatic experiences. Yes it is important and essential to 'break down' and 'fall apart'. But then after the initial pain, shock, trauma, it is the resilience that is inspiring.
After watching a segment on Jaycee Lee Dugard and seeing her interview, I was blown away at how 'together' she was for someone who had been imprisoned for 18 years (as well as being sexually abused), how full of love rather than hate and anger. The resilience just glowed from her. Instead of being bitter and twisted, she was full of faith, love and hope. I am yet to read her memoirs, but will have that on my 'to read list'.
Another inspirational woman comes in the form of Ingrid Poulson. I discovered her this evening on MamaMia, and once again saw that glow of resilience. In some ways it is quite contagious. I think of everything I have been through and feel empowered by the fact I am still standing, tall and proud. Albeit I have never lost a whole family through murder/suicide, but I can see what Ingrid is driving at... what is the point of it all if we are angry, bitter and twisted? It does not honour the lives that are lost, it does not strengthen our resolve, warm our hearts or give us hope. Anger has it's place, but it should be a very small place.
Hate begets hate. Love begets love.
I have made a conscious decision to surround myself with love. With people who are caring, loving, respectful, non-judgemental.
We need to surround ourselves with these elements to be the best we can be. Look at those who inspire us and see their traits and try to emulate them. Ignore the anger, the greed, the jealousy, the bitchiness.
Life can be beautiful. Life is beautiful... if we let it.

Thursday, 21 July 2011

I should have shares in Huggies...

I only think of this when I hear people's toilet training stories and then realise: "damn I have three kids in nappies... I can't imagine a day without changing a myriad of nappies..". Yes THREE kiddies all in nappies. FUN! My 5 year old has the best one's *insert sarcastic tone*. Because of his weak bowel muscles he gets quite constipated, thus we have to use all manner of laxatives and such. Then when these treatments 'work' we have the most awesome display of nappy fillingness. Ok so that was TMI yes? Sorry, it's just a part of our everyday life. And I'm sure all parents have had many a conversation a la poop. I sometimes feel like these conversations will never end in my house.
"Has he done one yet?"
"Damn, that's been a week"
"Guess what?!?!?"
"He did a massive one today!!!"
"Yippee ky ay mother!! That's awesome!"

The funny thing is, we have three kids and have not yet gone through that 'toilet training experience'. I am kind of nervous thinking about it. I am almost happy enough to change nappies for a few more years to avoid those 'toileting incidences'... you know the ones...
  • smearing poo
  • peeing on every item in the house
  • playing in the toilet
  • stripping down in public because that's how they would like to go to the toilet..
  • 'posting' poop in lovely nooks and crannies (ie finding a nugget in your underwear drawer.. the irony)
and many, many more (feel free to add your experiences in the comment box).
 So for now I will look into shares for Huggies. Could be quite profitable. Or not.

Wednesday, 20 July 2011

A very memorable image...

So after viewing some of my favourite artworks/images, I had a flashback to an image that had stuck in my head from an advert in a magazine I saw over a decade ago. It's funny because I was surprised they used this image when I first saw it. I wasn't sure what it had to do with the brand "United Colors of Benetton". But it definately had the effect they wanted.. I was deeply thinking about it and the image is burned brilliantly into my mind. Of course years later when this image was a part of my life, I went on the search for it. I saw it in a different light. It was representing love and beauty in its purest form. Not that I didn't get that 'feeling' from the image the first time, but I can see how amazing this image is. How brilliant it is. How I wish they would re-release this 'campaign', because we need to see these images as beautiful, not something to look away from.
Ok so here is the image I am talking about....

 I love, love, love it. 
Because it is love. Love is beautiful.


These are a few of my favourite images/art works that I think represent beauty. Thought I'd share some pretty on my blog tonight...

Gustav Klimt 'The Kiss'

Edvard Munch 'Madonna'

Waterhouse's 'Lady of Shallott'

Tuesday, 19 July 2011

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.

Sunday, 17 July 2011

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.

Friday, 15 July 2011

Arrrrghghghgh Blogger, why won't you let me reply to comments...

As the title states, Blogger is being a right shite-bag and not letting me reply to comments :-( I really do appreciate everyone's feedback and comments. I have been trying for the last few nights to type replies, but it's just not happening. Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!
Okay got that out of my system.
Thank you to everyone for reading my very humble little blog. Much love to you all!!!
Now back to that glass of wine ;-)

The phone call lottery...

My husband must think that whenever his mobile phone goes off and sees that it is me: "oh no what kind of phone call is this going to be!" (just realised that rhymed *titter titter*). I mean it could start with a "Hey babe, what are you up to right now?" or on the odd occasion : "jfkdfdjkhfjkdzgbhdfhjfj!!! bfjdhghf   blaaaarrrrghghghghg   grrrrrrrrrr pffft" or it could even be "heeeeeeeeelllp!!". I must admit I'm a bit bi-polar/manic at times (hubby is probably nodding enthusiastically to this claim) and it definately is shown through the type of phone calls my knight in shining armour receives.
I wonder how it would be if it were the other way around... hmmm I probably be too afraid to answer. I'm not good with surprises and I am definately not good with tense situations that require you to remain calm and talk sense into the other person. Maybe because I'm usually the other person...

Just a bit manic.... but totally fun and all ;-P

An example of what my husband has to deal with:

Phone conversation July 15th 2011, 9.48am-

Me: Hi hun
Hubby: Hi babe, what's up?
Me: Um I'm just looking up on google aboout blisters. You know the blister that I tried to pop on my finger the other day?
Hubby: *pause* yeaaah...
Me: well I think it's infected and I wasn't meant to pop it anyway, and with diabetes you are more susceptible to infections from blisters, and I think it may go septic or something and i might die, oh my god I need to see a doctor or I might die (all this is said in one breathe)
Hubby: okaay babe you're not going to die. It's just a blister. Put some dettol on it and put a band aid on. Just breathe, relax.
Me: *deep breathing* okay
Hubby: so THAT is what you were calling for?
Me: ummm yes
Hubby: okay well I've gotta go
Me: okay, I love you
Hubby: love you too, bye

So yeah that was one of the good conversations you can find us having on the phone. I can just imagine hubby shaking his head afterwards. But it certainly settled me down. I am so lucky he answers the phone to me, otherwise by this afternoon I might've been organising my amputation.
I am just wondering whether I am not the only wife/partner that plays the 'phone lottery' with their husband/partner......

Thursday, 14 July 2011

My children's hugs...

I was discussing with my friend J about the hugs I get from my kids. Well actually they are my interpretation of hugging...
You see with Liam, he can't 'wrap' his arms around you to hug, but when you give him a cuddle you can feel his arm muscles tighten and his arms become quite stiff. I call this a massive bear hug, and I relish those from my big boy!

Liam and his bloody huge grin
With Jack it gets a bit complicated, because you may go for some close contact and he could push you away, but then later you may just be standing there minding your own when bam! Jack wraps his little self around your legs and then choofs off again before you've even realised a 'hug' took place. Then there's the times where you go to embrace him and he lets you. I call them reciprocated hugs, even though he doesn't hug back... he is letting me do it, so I take that as a huge sign of affection. Over time I've been getting more and more of those and less of the push aways. I do those hugs with Liam too because he doesn't always have the strength to 'hug' me in his way, but I know that it is reciprocated because he usually has a bloody big grin on his face :-)

Jack getting ready to bite kiss
My little girl is funny because she wants to be held but doesn't want to be hugged, if that makes sense. Everytime I go for the squeeze she wriggles about and seems to want to 'get going'. But I do get a snuggle cuddle with her when we lie down for a nap together or when she screams her way out of her cot and into mummy and daddy's bed to sleep the rest of the night.

I just love rubbing my nose into those collosal cheeks
With all three they let me smooch on their big, plump, juicy cheeks. And that is the most scrumptious part of being a mummy, for me anyways.
After describing these hugs to my friend I realised that some people may beg to differ on what I deem a 'hug' or a 'kiss' (all my children bite me when they 'kiss' me lol). I know my versions must seem so unconventional, but these 'hugs' and 'kisses' are totally normal for me and I cherish every single one of them *cue corny 'aaaaah' sound from sitcom audience*

Sharing one of my favourite pieces of writing...

I guess this 'poem' is one of my favourites because it helped me so very much when I started the journey of being a mum with a child with special needs and then again it worked its magic a second time this year when I found out my middle child was also part of that club.
It is great to read whether you are beginning the journey, already on the journey or even if you will never take this road, but would like to have a glimpse of the emotional side of it....

Welcome To Holland
by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

I get choked up everytime I read it. But I also fill with pride that I get to experience the beautiful Holland and that I am able to really appreciate all the amazing things about this place.

Wednesday, 13 July 2011

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. 

Tuesday, 12 July 2011

Don't ever, ever, ever refer to him like that...

I had no idea what to title this post, but that's what I came up with. I still don't know how to feel about what happened today....
Let me start with the fact that I don't get much, if any, one on one time with Liam these days, so today I dropped the two little ones in Occasional Care at the local shopping centre and spent three hours with my big boy. Liam was stoked once he realised he had my undivided attention and that we were about to do an old tradition of having a very sweet and yummy lunch at a cafe that enabled us to people watch (one of his favourite past times). I had our good friend J with us (you know the undiagnosed Aspergers bestie I was telling you about ) and we were enjoying our delicious lunch of toasted banana bread and choc mud cake. Liam was beaming from ear to ear, but at the same time concentrating on each person that walked passed the cafe. I was mid conversation with J when a lady that had been sitting near us came up to me and said "I just want to say what a great job you do" and some other words to that effect. It all became a bit of a blur after that. I thanked her but said "I am so lucky to have my son, he's awesome... high five Liam!" and Liam looked at me like 'errr what? who the hell is she?'. Anyway I am not angry at the lady, clearly she was trying to be really lovely and nice and all that, but it made me sad all of a sudden. Like she viewed Liam as if he was a burden, almost like he didn't fully exist, because she had said all this in front of him and only acknowledged him when I said he is awesome and that I was indeed the lucky one. I felt sick because I never view Liam as a burden, he is my son! I love him to infinity! How could anyone view my Liam that way, as if he is an inconvenience?? I guess I've been living in a warm cosy bubble... I surround myself with people that see Liam just as he is... awesome! And I guess I have also blocked out these moments successfully before.... Until today. I still have a tear in my eye. An ache in my heart. I'm really hoping it's just hormones or lack of sleep.

After this incident today I then started to remember some comments from other times. Like last week when a boy of around 7 or 8 years old exclaimed as he pointed to Liam "Poor boy, look at the poor boy". I know this boy wasn't being mean, but I wanted to say "No he is not a poor boy, he is a way cool boy who loves action movies and ice cream, laughs at his siblings misfortune when they fall over, who high fives you cos that's how he rolls, not just in a wheel chair", yet I just walked away trying to push the comment to the back of my mind. Well we know what happens to 'pushed back comments', don't we?? Yep they come back out at other vulnerable times.. Like today.
Another 'pushed back comment' that came hurtling it's way to the forefront of my mind today came from a conversation I had at a children's birthday party. I was having a 'catch up' with a lady I had met years prior to having children. We had gone out to a few events where of course I was always the life of the party. Anyway I was filling her in on Jack's ASD and she responded with something along the lines of "Wow one child with CP and one with Autism, you must be having payback from all your hedonistic days in your early twenties!". At the time I gave a forced laugh, shrugging it off. When really I should've pointed out to her that my children are not a punishment. That they are the biggest blessing in my life. Did she not realise what she was saying? No I guess she didn't and she probably would be mortified if she knew how much she hurt me.
Thinking about these incidences I worry people think children and adults with Diffability are a punishment or a burden or anything so demeaning. When they are anything but a punishment! Yes they make life a bit more challenging at times, but there's a difference. And may I add that we can all make life challenging at times.. just saying *insert winky face*

Monday, 11 July 2011

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 'Back to the Future'....

Are you ready to hop into the De Lorean and 'gun it to 88?' Ok so I will have to add the disclaimer: DO NOT TRY THIS AT HOME.
Now this is something I know I shouldn't do... Going over the past and thinking what I could've done to change things. None of us should do this. It doesn't make anything 'better'. It certainly won't change anything. It most likely will make you feel like crap.
But there are times when I've thought:
  • "If only I had spoken up in my obstetric appointment when they had decided to induce my labour with Liam, and had told them I felt safer with a c-section... maybe Liam wouldn't have severe Cerebral Palsy now"
  • "If only we had gotten my mum tested earlier for the cancer... maybe she would be here now"
  • "If only I had been more focussed at university and finished my degree earlier...then I would've been teaching and earning money for a while so I could've saved before I got married and had children" 
Funnily enough I am actually struggling to think of regrets, because there's a reason all the things have happened to me and these things make up the person I am today. And looking at this list there is only maybes... And maybe Liam was always going to have CP and maybe my mum was going to die of cancer anyway, no matter when we discovered it. And most likely I wouldn't have saved much money after uni if I hadn't gotten into the family way...
Everyday people spend time thinking about the past and what they should've done. It is wasted energy, unless it is used to stop any further preventable incidents. It depletes you if you let it feed on your mind and your heart. It is toxic. Be kind and gentle to yourself. Do not worry about the past, as it is done and finished.
No regrets.. Non, je ne regrette rien

Friday, 1 July 2011

Taboo.. going from Still birth to Suicide

So in my page on the loss of my baby Dylan I wanted to take away the 'Taboo'ness of the subject of losing a baby. Tonight I want to take away the 'Taboo'ness on the subject of suicide.
Suicide is a very, very tough subject. But I think it needs to be talked about, openly. I know a number of people who have been touched by it. I have never been close enough to know it's full impact and I guess you would never know unless a very close loved one has committed suicide.
My pop who died of pneumonia before I was even born, had attempted suicide when he was in his forties. He ended up in an institution for the rest of his life after his failed suicide attempt. I wish my mum was alive today to tell me more about it. How it affected her. What was he like. Did she know what the particular reasons were. All I know is that he suffered from depression. And that he was a talented artist.
The good thing is, that times have changed... depression is no longer seen as something that needs to be hidden and locked away. Although it may be difficult for those who have never experienced or been touched by it, to understand. But in this day and age it seems to have touched everyone in some way. Or is it that we are able to talk about it now, that more people are coming forward with their stories? Whichever the case, it is not going away and so many people need help and understanding. Not judgement. Judgement is the last thing they need.
When I was young I had a few 'moments'. These 'moments' could've ended my life. Thank God that I never went through with it. I would never know all this amazing stuff that's happening in the world. I would never have had Liam, Jack or Evangeline. I don't know what stopped me, or made me come to my senses, but I'm glad I did realise it was not the answer.
Two of my friends had said today that it 'takes guts' to go through with it. And yes, I guess you could put it that way. But it takes a mind that needs help, major help, to get to that point. To get to the point that this seems to be the ONLY solution. When it is NOT the ONLY solution.
I guess what I'm trying to say is that we as a society need to be more open, and waaaay less judgemental. I know it's very much a Utopian view. But any dream is a possible reality. We just have to work towards it.
I haven't even touched on half the topic and what needs to be covered. But I think I will leave it here at the moment. It's pretty heavy going for a friday night.

And if you are interested in the impact that suicide has on loved ones I highly recommend reading blogger Lori's journey.

School Reports...

We got Liam's school report (half yearly) this week. I was very happy with it. But I've noticed parents can get disheartened by the results and I wondered what was different with Liam's report to other children's... Then it hit me.. It's about expectations and once again that whole "normal" thing. I want to reassure parents that whether their child is 'acing it' or 'just passing', it is all about perspective. We need to look at the positives that are written about our children, rather than focus on what they are doing 'wrong'. Yes it's good to get an idea of where your child needs help, but to dwell on the negatives is just going to end in tears. I didn't look at Liam's report and say to myself "oh but other children his age would be doing something more..", that would just be pointless and painful. I looked at each achievement he has made and did a little celebratory dance in my head. 
I also look back at my school reports from primary (elementary) school... I sucked big time at math. BIG time! The school even arranged for a tutor/aid to help me with my mathematics once a week. I kept sucking. My mum tried to help me, but threw her hands up after awhile because I guess it was like talking to a brick wall. I just didn't get it. Fast forward to high school....
In year 8 I ended up in the 2nd top Math class.. yes people! Me! In top math! So don't look at your child's report and say "oh no this is it. This is what my child is capable of for the rest of their life". It is simply a snapshot of what a teacher has captured of that child during a few months to a year.
The world is always our children's oyster!!! Hang on! The world is everyone's oyster, no matter what age or diffability!!! Now go make some pearls people!!!