Embracing Our Autism Journey

By Jade Joyce | Published on September 3, 2020 | 8 Minute Read

On the 24th February 2010 at 1.36pm I was handed my beautiful 6 lb baby boy at just 18 years old. I knew from this moment I would protect and love my son no matter what.

Ten months previous to this I was currently undergoing surgery for the removal of a brain tumour that had been miss diagnosed for a long time. The tumor was removed but left me with my own disabilities of being severely sight impaired and partially deaf. I had damaged hormones and was told I would find it difficult to conceive for a long time or even at all.

So when I became pregnant so soon after I just knew this was meant to be. Jayden was my miracle.

He was a fussy baby. He never slept through the night, he had colic, reflux, had to have non dairy special milk. Once he started solid foods. he was a lot more settled, but would only eat a certain texture of food. As a first time parent, I was so set on reaching those milestones and I think this is maybe why I picked up on Jayden being on the autism spectrum so young at age 2. Jayden did not yet say anything. He would just make sounds. He did wave and point but he stopped doing this quite abruptly. He would rock back and forth or spin in circles for long periods of time rather than play with toys. He would line them all up and he would take no interest in other children. I just knew deep down in my heart there was something that he needed help with. And because I myself was misdiagnosed with my tumour, I think this put some fire in me to get to the bottom of Jaydens needs. I was his parent, his voice, his support.

Jayden was diagnosed with autism spectrum disorder at age two and a half years old by a pediatrics doctor, a speech and language therapist and an occupational therapist. Our autism journey began.

At around three and a half years old Jayden started to become more frustrated. Meltdowns were a daily occurrence, which included violence kicking, punching, biting anything or anyone in his path. Head banging, which became so extreme, that Jayden has to wear a helmet when he goes into meltdown. He would go to sleep for maybe an hour or two in the evening and then be up all night long. We couldn’t go to places like all of our friends did to the soft play or meet up for a play date since Jayden was extremely noise sensitive and found this difficult to cope with. So we spent our days mostly outdoors just us two. I always felt quite isolated and alone and absolutely terrified if I was doing enough for my precious little boy. I had the support of my mum and dad who Jayden also adored and I will always be eternally grateful to them for being on this journey with us.

At age four I made the decision for Jayden to attend a special educational needs school and have an education and health care plan in place. I felt a setting like this could bring Jayden to his full potential a lot more than I could and he thrived! Jayden used something called PECS (picture exchange communication) and then started to say words. This helped so much with him being less frustrated as he was able to communicate his needs a lot more. I never knew if Jayden would talk. He’s nine years old now and still can’t have a conversation, but he uses his word commands to get what needs and this allows him to be less frustrated.

"One of the questions I’m always asked is how do you do it? How do you care for a child with such complex needs on such little sleep and with your own needs? My answer is always the same . I just do."

As Jayden has gotten older and progressed through school he has also been diagnosed with other things such as ADHD, Sensory processing disorder, learning difficulties, Anxiety, Sleep disorder and challenging behaviour.

One of the questions I’m always asked is how do you do it? How do you care for a child with such complex needs on such little sleep and with your own needs? My answer is always the same . I just do. I do not go to bed and wake up with some super hero cape. I am Jayden's Mum. I am all he has and I just have to cope for him. We take each day as it comes some days are better then others and yes some days are hard but some days are also filled with progress and happy times we take the good with the bad.

I was always embarrassed, maybe too proud, to accept help from our local authority, but in the year of 2017 Jaydens little brother was born and I knew it was time to accept the help to spend some time with his brother as Jayden takes up my time a lot more than his brother does and to also recharge my batteries to be the best version of myself I can be for him. Jayden sometimes gets respite care every 8 weeks for 48 hours he himself sees this as a break from his family life and enjoys it.

I always wondered if Jayden's little brother would be on the spectrum too, but he is not. It is strange for me the second time around seeing a child without autism and their behaviours as it was all I ever knew, but it is also another wonderful journey to experience.

My advice and my opinion will always be if you are starting your autism journey, take take each day as it comes. Try not to plan too far ahead and embrace it. Jayden has taught me many things about life that I never would've learned without him. He introduced me to his world and I’ll always be grateful to him for the awareness. I now try to make other people aware of autism. I always see Jayden as just a child. First he is him, Autism and all.

I have completed so many related autism courses over the years and what I will say is I think a parent always knows their child best no matter what professionals tell you or what is down on a piece of paper. Each child with autism is still an individual and your own child will have different needs from others on the spectrum. Trust your instincts to support your child. It has worked for Jayden and myself and I still can’t wait to see what else our autism journey brings to us throughout the years.

About the Author

Hi! I am Jade, a 27 years old mum to two wonderful boys. In my free time, I enjoy going to the gym to do strength training, which helps with my mental health needs. I enjoy spending time with my friends and family. I am a blogger who blogs about our journey with autism to spread Awareness.