I still remember the look on the receptionists face as I dragged my screaming 2 year old through the door way of the paediatricians clinic, trying to juggle my nappy bag, an empty pram and the child that refused to sit in it. It was the type of look that said “not another one”. The type of look that as a mother it makes you want to get all gangster up in her grill asking her things like “what chu looking at, aint you ever seen a tired 2 yr old before?”
To say Emmi-Belle was a challenge would be an understatement. Emmi had just turned 2 and still would not answer to her name, didn’t interact with other kids, would not say mum or drink but would recite a 2 sentence scene from her favourite Dora episode. She had to have things done in a particular order, at a particular time, in a particular way and if any of that changed, world war 3 would break out. Her sleeping or should I say lack of sleep was becoming a real issue for us. Emmi was one of those rare children that could completely function off only 2-3 hours sleep a night. Chris and I would tag team who would do an all nighter and who would get to sleep that night. Our night consisted of getting Emmi-Belle to bed at midnight only for her to be awake and ready to go by 2:30am. Normally it would be screaming and crying from 2:30 until 5am or so when she would settle and be content with watching Dora or Yo Gabba Gabba.
I put her tantrums down to simply being a naughty 2 year old and that I was just doing something wrong. I had it so easy with my first daughter Taleah so I just kept telling myself not to compare the two. With everything that was going on I was finding it really hard to juggle a growing business that was consuming most of my time but not yet paying any bills, a 3 yr old that simply craved mums attention, an extremely difficult 2 year old and also a relationship with my husband to be. Little did I know at that time that shit was going to get real and life was going to get harder but after the storm comes a rainbow and there really was light at the end of the tunnel.
I guess I knew deep down there was something different with Emmi-Belle but I just didn’t want to believe it. Even as a new born she had different mannerisms to Taleah. Things like not smiling at a loved one who was trying to make her laugh, not making eye contact or rejecting affection or comfort. Emmi always kept to herself and preferred not to be touched even as a baby.
I finally built up the courage to book an appointment to see a paediatrician to have EB assessed. I booked an appointment with a local paed that had been highly recommended by my GP. He was an odd man with a very neat desk and an office that was not kid friendly at all. As EB started to get into and climb on things you could see he was uneasy with the disruption of his belongings. He asked me a series of questions and jotted my answers into his data base. I don’t think he looked at Emmi-Belle for more than 2 mins and at the end of our appointment he said a sentence that will stay with me forever… “I am very confident she is on the spectrum” My heart sunk to the deepest place in my gut and my eyes began to well. I just kept thinking to myself “keep it together, breathe Nik, breathe” it didn’t work and when he handed me the box of tissues it was almost like the permission to breakdown. I sobbed for a few minutes while he tried to explain to me what this meant. He promptly booked me an appointment with a speech therapist who would later confirm the diagnosis and sent me on my way. I sat in the car in the car park for a good 20 minutes and cried my heart out. You know that ugly cry, when you cry so hard you sound a bit like a dying seal? I got it together enough to make my way home and wait to tell Chris the diagnosis.
At first Chris was in denial, not wanting to believe the doctor was right but as we looked deeper into the diagnosis and the world of ASD we began to see the common traits that Emmi-Belle had and it became clearer than ever that the doctor was indeed correct.
The next 6 months were a roller coaster for our little family, with tests and workshops and forms and more. As we learnt more and more about Autism it began to open our eyes to a world we never knew existed. A world were kids and parents do amazing things, communities that hold each others hands through the hard times. A world where there is not enough awareness, funding or assistance to help these little people that are apart of the next generation. We have had wins and losses and we pick and battles wisely but slowly we are getting there and the path seems to each day be getting clearer. I feel like everything happens for a reason, I became Emmi-Belles mum for a reason. She makes me want to be a better person. She makes me want to help people and I now see the potential in everyone.
To anyone out there that might be going through this at the moment I want to tell you something…
EVERYTHING IS GOING TO BE OK. IT GETS EASIER AND WITH LEARNING MORE ABOUT YOUR CHILD YOU WILL HAVE SO MUCH SUCCESS. THERE ARE PEOPLE OUT THERE THAT WILL SUPPORT YOU AND YOU WILL FIND IN TIME THE BEAUTY AND HONESTY IN ASD. FIND THE HUMOUR IN YOUR CHILDS QUIRKY TRAITS AND ENJOY THE SIMPLE MOMENTS OF PURITY.
I want to thank you all for taking the time to read my story. I hope to shed more light on the world of Autism and help to create more awareness.
Love Nik xx
Read Nikki’s interview here xx