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 me and 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.
Thank you."
