This is a blog about my life, which I think so far has proved to be stranger than fiction. Some blog entries may be in 'real time' as in happening in the present. Others may be reflective.. looking back at events and things that have happened to me in the past. I may also include information that is helpful to those who have/are experiencing the same thing/s.
Although once again I can't shut myself up and must add a few words *insert cheeky winky face*.
Tomorrow is my husband and my 5 th Wedding Anniversary.
Five whole years of wedded bliss!!!
So I thought I'd do a trip down memory lane.. and for you all to have a glimpse into my past, my life and my personality (because we all know that a wedding represents our tastes and attitudes lol).
Can you tell I was nervous as hell??
Saying our vows
Applying the rings
Smoochy boochy
We just kept smiling and laughing the whole day!
Liam didn't want to watch his parents getting fresh lol
Yep I'm slightly WTF'ing this myself. But it's the truth.
My whole world has shifted more than ever with Jack's diagnosis, but shifted in the right direction.
I even question how and why this diagnosis is different to Liam's diagnosis. I mean Spastic Quadraplegic Cerebral Palsy is pretty major, it is severe and it is beyond life changing, but for some reason Autism affects in a different way, a more powerful way... well for me anyways. A way that changes your approach to situations, to other people, to your children. Your patience increases. Your awareness of situations increases. Your eyes see differently.
When I started therapy with Liam it was hard, it was hell. It was an uphill battle. I felt I was missing out on motherhood. And when I got Jack's diagnosis I thought that I would be on that same painful path. But instead I found a different approach to therapy. I shouldn't even call it therapy. It is called having fun, embracing what your child loves and building on that. It is indeed a different approach and not everyone who has a child with a disability is on this type of journey. But working with Jack has made me re-think how to approach things with Liam. It has made me re-think my interaction with Evangeline. I am seeing that I have been experiencing 'motherhood' this whole time! And damn what a silly douche bag for not realising it! It may not be the 'typical' version of motherhood, but it's a version that millions are experiencing... I am not alone (remember approximately 1 in 120 children have Autism!!! and there's many with other disabilities diffabilities).
Anyways I'm going to be all over the place with this post, as I always am with things I get passionate about lol (yes I lol'd, just my insecure self getting in this post).
So as I was saying.. Autism, best thing to happen to me. Ok kind of selfish thought I know. Maybe I am the only one thinking this. And I most probably am. But hell I'm going to put it out there.
I was watching a documentary the other night called The Horse Boy and in it the father of a 4 year old boy with Autism said "Autism has made me a better father". I sat there nodding like a lunatic. Yes, yes, yes. I feel as a parent I have changed for the better, just in these last few months since Jack's official diagnosis. Not only am I feeling like I've improved as a parent, but as a human being.
How can one improve as a human being? I guess just in the fact that today I found joy, pure joy, in throwing streamers/cellophane in the air with my Jacky. Not to give, not to recieve. Just to be. To experience the simple fascination that shiny falling objects bring. I cried with a smile on my face. I looked at Jack and how he looked at the slowly descending spectacle. Seriously, how could you not be a better human for bearing witness to the miracle of life, of gravity, of colour and all those sensory sensations. To let go of the 'white noise' that we create in life. The unnecessary periphery that somehow takes up our mind space, our time, our energy.
Jack has taught me so much in regards to dealing with stress. When a person with Autism is stressed or excited they usually 'stim' or 'ism'. Such as flap, rock, jump, hum, bite etc. With my anxiety and depression I have noticed I calm quicker when jumping on the trampoline with Jack. Who knew the simple act of jumping continually could calm one down? Oh hang on that would be my 2 year old with a Diffability!
From learning about Jack I have learnt about myself. And certainly what changes need to be made. I am a work in progress, just as Jack is. As we all are.
Oooh now this is a tough one and I think if we are talking 'wish list' here we could be very wishful and erm far fetched with our requests, or we could be slightly realistic but pick things that are still out of reach. So I figured I would do two lists...
The 'so far fetched, no way in a million years' list
and
The 'possible if I had a bit more money etc' list
I am sure as you read along you will be mentally writing out your own list, so please share with me in the comments, because I may like something off your list too *insert cheeky winky face*.
Drum roll please *brbrbrummpbrrrump* (it's a sick drum)
The 'so far fetched, no way in a million years' list (although I still hold out a lot of hope)
Cure for Cancer (look I know it may sound wanky, but geez the statistics are freaking high and far from good, and if Cancer didn't exist my mum would still be here. So I'll be wanky if I want)
Cure for Diabetes (yep selfish I know, but damn I am sick of worrying about blood sugar levels and complications such as blindness and kidney damage)
Cure for Cerebral Palsy (I love Liam just the way he is, but I am pretty sure if he had the choice to walk, talk and feed himself he would certainly raise his hands for that!!!)
The 'possible if I had a bit more money etc' list
A bigger house, with 5 bedrooms, 3 bathrooms, 4 car garage. All wheelchair accessible. Kitted out with every comfort for Liam. And of course comforts for the rest of us (like a 'man cave' for hubby).
A big holiday, like going to Disney World in Florida, Las Vegas, New York, then London to visit relatives, France to visit a dear friend, Holland to visit more dear friends and then some tropical island hopping to chill out on the beach for days on end.
Two cars, one kitted out with wheelchair accessibility and the other one for my hubby to get about in
Damn I need a third list...
The 'I hope my husband reads this and goes and organises these presents for me' list
A pair of Red Cowboy Boots, because if you're like me and follow the amazing blog that is Edenland, you will feel this insatiable urge to buy cowboy boots after reading through her poetic words and moments of whimsy. Eden Riley represents a powerhouse of strength, gusto and awesomeness... and she wears Cowboy boots, and wants to be buried in them, so that really tells me one thing... cowboy boots are a must!!!
Another tattoo... this time celebrating my children. I already have two tattoos. My first one, which was just a part of that "I'm going to get a tattoo" thing, and I chose an Eye of Ra. My second tattoo takes up a quarter of my back and it is in memory of my mum and my baby boy Dylan, included is their date of passing and a heaven-scape of stars.
So this time I want my three muskateers names tattooed on me with dragonflies and butterflies, representing life, growth, beauty, love and hope.
Not too much to ask... *insert pleading hopeful face*
I would love to hear from you all on your Christmas Wish lists (yes that is a plural there, now that we have established 3 different category of wish list). If you have a blog and haven't blogged about your wish list yet, please join in! I'd love to read it! Just tag my Facebook page to your blog post link when you finally post it on Facebook.
Oooooh I am now officially getting excited about Christmas!!!! And will now attempt to put up the Chrissy tree... wish me luck!
....you finally hear the word "Mummy" spoken by one of your children. With their sweet little voice. To your face. Well at least to the reflection of your face. Yeah that moment.
And it was my little boy who sees other human beings as objects. Supposedly.
Yes, today I was an object, but I was an object of his affection.
Jack and I were in front of the mirrored wardrobe. I was crouched next to him, when he gently placed my hands on his waist- his way of asking to be picked up.
I lifted him up and held him close, as we both looked over at our faces peering back at us from the mirror.
"Mummy" he chimed.
It's different from when a baby says "mama".
It's a word.
Not a babble.
And it sounds amazing.
Beautiful.
Poetic.
Magic.
Six years.
Six years of being a mum.
I have waited six whole friggin' years for this moment.
And it was so beyond worth it.
This is footage and the words from the speech I made at the fundraising Auction Night for the Early Intervention Support Group/Play Group we attend. I was nervous as hell and couldn't eat my dinner before hand lol. But I felt awesome afterwards *insert smiley and very relieved face*. If anybody asks you to do a speech, especially to tell YOUR story.. DO IT!!! Don't hesitate!
So here it is..........
"Good evening everyone.
I am Yeran Bruce and this is actually my second time doing the ‘parent speech’ for KU Starting Points Auction Night.And I am very honoured to have been asked to do it again.
5 years ago I stood before a large crowd sharing the story of my little family at the time. It was just me, my husband Byron and our little baby boy Liam.
Liam was diagnosed with Severe Spastic Quadraplegic Cerebral Palsy at the age of 6 months old. We were told he most likely will never walk, talk, be toilet trained or feed himself. This was devastating news to absorb. Our paediatrician: The amazing Dr Michael Freelander had urged us to go to KU Starting Points to get as much help and support as possible.
Seriously we have never looked back.
Every week I would take Liam to group and it was like a second home. He loved it there and of course everyone loved him and his extremely infectious smile.
As Liam grew his disability became more and more obvious. By the age of one he still hadn’t rolled over, while other babies born at the same time were starting to crawl and walk. This was hard for me, but when I came to Starting Points those sad thoughts dissipated. This was the new normal, it was our normal. Our safe, little bubble.
Each day I spent doing Physiotherapy, Occupational Therapy and Speech with Liam. It was draining for both him and myself. But of course every minute was worth it, and what would seem like the most miniscule improvement for other people was huge for us! I remember working with him on using a straw, as we wanted him to move on from using baby bottles at some point in his life. I felt like it was never going to happen. That he’d be a 20 year old drinking from a baby bottle. Then one day while I held the straw up to Liam’s lips and was getting disheartened, I looked away, watching the tv... then all of a sudden I heard a sipping sound!!! Liam was drinking from a straw!!!! I was beyond ecstatic and couldn’t wait to share the news with everyone. A simple task, that others take for granted, was now cause for a huge celebration.
By the time Liam was 2, Byron and I were hoping for a sibling for Liam. A child that would be healthy and well in everyway. I ached to have that normal motherhood experience. We fell pregnant and couldn’t be more excited! We told everyone we knew and started planning for our future as a 4 person family. But at 20 weeks my waters broke and I gave birth to a little baby boy we named Dylan. It was another devastating blow in our lives, but it gave me the greatest perspective... whenever I felt sad about Liam’s Cerebral Palsy, I reminded myself that he was alive (he nearly died at birth) and that he was a happy, loving boy.
At the end of 2008, when Liam was 3, we fell pregnant again. This time I was more anxious than ever before. I couldn’t enjoy this pregnancy. I was just plain worried all the time. In the last trimester I spoke to Liam about the brother he was about to have. I am more than certain he understood.
Funnily enough I remember telling a few people my worry for Liam’s feelings.. that he will see a younger sibling grow before him, without a disability and how unfair that was and that the only fair thing would be if his brother had one too. Strange thing to say, I know. And the irony of what was to come has not evaded me.
At 35 weeks my waters broke... on April Fool’s Day no less. I had to convince Byron I wasn’t joking. And on April 2nd Jack was born. Everything was perfect with him. No seizures and apneas like his older brother had at birth. We breathed the biggest sigh of relief. When Liam first met his little baby brother at the hospital, you could not wipe the huge grin that had permanently taken residence on his face. Lots of pics were taken and all was right with the world... Or so we thought.
At 3 months old I noticed Jack was a very tired baby, very weak. I started to panic. Thinking ‘Oh no he has Cerebral palsy too! ‘. He also started going blue in the face every time he got upset. I spoke to those around me about it.. they dismissed it ‘oh all babies go a bit blue if they cry hard enough’ or ‘its just wind’.
I had this instinct to go to our trusty paediatrician and ask him for a thorough check over. He responded with “His muscle tone is good’, so he ruled out CP. ‘But you’re going to kill me for this’ he said ‘I can hear a murmur, a possible hole in his heart’. We shrugged it off, saying Liam had that too and so do lots of babies, but we will have to get it seen to by the cardiologist.
At the cardiologist appointment, Jack laid there for an Echocardiogram aka heart ultrasound at the age of 4 months. He was so well behaved and I even remember thinking to myself how I will remember this moment for the rest of my life.. Jack cooing at the Dr and smiling. But i didn’t realise how much i would remember this moment for other reasons. It was when the Dr finished the scan that she turned to Byron and myself and said “Your son has a congenital heart defect called Tetralogy of Fallot. And the only treatment for it is Open Heart surgery”. There are no words for that moment. Another devastating blow on top of the other blows we had received over the years.
Thank goodness for the love and support of the staff and parents at KU Starting Points. It really helped meand my family through that whole terrifying experience.
After a very scary 3 weeks of hospitalisations for Jack as he kept turning blue from the lack of oxygen in his blood due to the heart defects, we finally got him into surgery.
I can’t even tell you how i felt. It was a blur. But I know that I wasn’t resentful of the surgery as this was what was going to save his life.
The surgery was a success and Jack was sent home after a week to recover. We had to pick him up like a newborn again. I also was very wary of giving him tummy time and pushing him to do things physically. So when he was late in some milestones, I just overlooked them. I mean he was powering ahead of Liam, so I didn’t see Jack as behind.
And i guess another thing that took my mind of jack’s development was the surprise pregnancy of our last child. This pregnancy was more draining than ever. But definitely worth every bit of tired achiness. And after an uneventful 9 months, I gave birth to a healthy baby girl, Evangeline. The three children were more work than I ever imagined.
Through all this we still tried our best to attend therapy appointments for Liam, but it was hard.
One speech therapy appointment will always stick in my mind like glue. As we had finished Liam’s session I casually asked the speech therapist how many words should a 15 month old have by now and mentioned a friend who was taking their child to speech at 18 months old because they only had a few words. She asked me how many words was Jack saying... I said none. Hmmm she suggested to take Jack on for speech.
I thought, well it’s through the hospital, it’s free. Why not?!
Our following appointments slowly revealed bits missing from Jack’s development. Was he pointing at objects? No. How is his eye contact? Minimal. Then I realised what the speech therapist was driving at. Jack might have Autism.
Of course the seed was planted in my head and that equals me googling like a mad woman. Goosebumps. Everything I read, it was Jack. I was then watching Jack like a hawk. Observing every spin, every flap, every rock. Everytime he avoided my eyes.
I went back to our fantastic paed again. Something like a revolving door really. And I told him about Jack. He asked if jack was affectionate. I had never really thought about it. But no I was the one giving the hugs and kisses and half the time I was being pushed away.Dr Freelander then said that kids with developmental delay tend to display autistic traits, we will give it time and see how he develops, especially after Liam starts school.
You see everyone who knew us, friends, professionals and staff, had reassured us that many siblings of children with special needs tend to be a bit behind. Larraine, the amazing superhero that runs Starting Points had said reassuringly “you are not unique in that a brother or sister has been delayed because of their older sibling”. But she said she would observe Jack through the first term that Liam was at school just to make sure everything was ok.
At the end of that term Larraine pulled me aside and had that look I’ve known so well from professionals over the years about to tell me something serious and in effect life changing. She said she could see behaviours that aren’t normal. She didn’t want to say Autism, because of course a paed would have to make that diagnosis. But I knew.
I knew, but felt I couldn’t move forward until I got the diagnosis in black and white print. It was torture. Waiting. I couldn’t grieve like I was able to about Liam’s diagnosis, because the process was much slower.
And the day we got the official diagnosis was the day I got to experience the grief, but strangely enough the bigger feeling I had was relief! Finally! We could move forward. We could make a plan of attack. I could stop trying to convince people of Jack’s behaviours and start to celebrate all the good things about him.
Every now and then I stop and think. Oh my goodness, I have a child with Cerebral Palsy and a child with Autism. Is this really happening? Then I look at every awesome thing they bring into my life and into those lives around us. How lucky I am to have them. I get to witness miracles on a regular basis. I have an opportunity to teach the world about my boys and their ‘super hero’ abilities.
And if it wasn’t for KU Starting Points, I really don’t know how or where we would be.
And looking at our story, it shows you need to believe in yourself, trust your instincts. As well as believe in your children. They are amazing and will achieve so much.
Ok it's not so wordless, but there are no words for his awesomeness. Liam shows us how to use the abilities that he does have. Love this boy to bits...
Ok so the last post I made was a vlog where I fell apart.. just a bit. I was worried about every aspect of my life. I didn't know whether I was Arthur or Martha. I wanted to be everything to everyone. I wanted to complete every possible task I thought was expected of me. And then I realised I didn't have to.
Da-dah! Epiphany time!
After talking to some very amazing people and reading The Imperfect Mum's blog post on the expectations we put on ourselves (nobody else puts them on us!), I was able to gain some perspective and understanding of my situation. I was the one thinking I should be doing this and that. I was the one that placed the pressure on myself to be this, that and the other.
It was all in my head. And I had the power to change that!!
I know changing what goes on in your head is actually bloody hard. And I'm not saying I am a professional and what I do will be a fail safe approach to helping with that depressed, overwhelmed feeling. But I thought I would share what helped me to get through the last few weeks, or was it months?? Damn, it can screw with your sense of time.
First thing I did was: LET GO!
Almost like bungee jumping off the bridge and saying "Weeeeeeeeeeee!!!".
I stopped stressing that the dishes weren't done. They will get done. Sometime.
I stopped trying to control everything that was happening because *newsflash* you just can't!
I stopped wanting to 'fix' my children right here and right now. My main thing was to just plain enjoy them! A happy mum equals happy children. True story! If they see me stress about trying to fit in this amount of time on this amount of therapy etc, said therapy would be null and void anyways.
Second thing I did was: TAKE BABY STEPS!
Tackling things a little bit at a time. A mouse can eat a whole block of cheese as long as it nibbles, otherwise it would choke!
I had to realise everything worthwhile takes time and so can I.
Writing a list, prioritising and then slowly making my way through it... or not. I make the rules. The rules that suit my life, my family, the situations and experiences I am faced with.
The last thing I did was: CHANGE MY PERSPECTIVE!
So every time my negative thoughts came through and tried to drag me down to the deep depths, I put on my ninja persona and did a judo chop.
I had to be very conscious of naming all the positive things in my life (no matter how small or supposedly insignificant) and focussing on them.
I understand that not all circumstances would be helped by using these steps. But for me they have done a great deal.
It also helped to have such a wonderful 'cheer squad' from my friends IRL (in real life) and those in the 'blogosphere'. Support is definately a big factor in making it through such tough times, whether it be mentally or situationally (that's a real word right?!?).
Now it's time for me to move forward and KICK ASS!!!! Who else is with me?
