Autism mum’s heartbreaking letter to special needs families
When Cody was diagnosed at the early age of 17-months he was a quirky little guy with high energy but somewhat aloof and not really ‘autistic’ looking, I guess.
As Cody grew older his disability was much more evident and it’s been hard.
I remember thinking I felt like I had to explain why Cody was acting in a certain way or almost apologising for him being too loud or disruptive.
When Cody was little and having a meltdown he just looked like he was a young child having a tantrum and it wasn’t until he got older that it was much more evident that he had a disability and for me that was hard. I guess, I somehow thought or maybe even wished the autism would disappear and I know it sounds ridiculous but that’s where I was then.
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I remember thinking when he was very little what would autism look like for Cody as he got older.
I remember watching other children with autism and studying them to try and envision what Cody would be like at that age.
I remember wondering asking myself what will Cody look like as an older autistic child or as an adult? Would he look extremely disabled?
(From left) Son Justin, 20, Cody, 17, Leasa, 51 and husband Scott, 57. Image: Provided
I don’t know why I always wondered this but I did. I was always eager early on to meet older children who were on the spectrum to see maybe what the future would hold.
I had so many questions to ask like why do you ‘stim’?
What makes you agitated and what best helps you during these times?
These were questions Cody couldn’t answer and I was so desperately looking to get inside Cody’s head to better understand and to help him navigate this completely overwhelming and frustrating world. I so wanted to see what the future would look like for Cody.
It was difficult for me to see older children that “looked disabled” and when I say that it’s because with autism the disability is not always glaringly obvious.
‘I used to wonder what Cody would be like as he got older.’ Image: Provided
As Cody got older and the small circle of friends that I have cocooned myself with all who have autistic children, I continue to see the struggles they have.
In my close circle a few are making the very difficult and painful choice to place their child in group homes. I know this is not something that was decided overnight. I realise it’s been a gruelling back and forth debate with questions and uncertainties of whether it’s the right thing and all the raw emotions that go with it.
It’s hard and I understand it and although I’m not there today I never ever judge instead I understand and am always willing to listen.
This is a tough call and many face this as our children age-out and caretakers become too overwhelmed and stressed to continue caring for their children. Although, of course, it saddens me I also understand that it’s all a part of this journey and I understand everyone’s limits with no judgements ever.
I feel it takes an even stronger person to realize their limits. Everyone has their strengths and weaknesses and it’s okay to say I need help.
As Cody has gotten older he continues to look more disabled but it has made it easier on one hand because I don’t have to explain his outbursts or the reason it’s hard for him to communicate but on the other hand he’s older and stronger and much harder to control.
Cody has always had an extreme amount of aggression so early on I knew I had to work hard and put in place everything that he needed in order to keep this under control for fear of what the outcome would be.
There were many, many, many times I thought I might not be able to care for him but I just kept working with him and hoping that day would never come … and on the difficult days I would think is this the last day I can do this? But ultimately, that day would end and a new day would emerge and I was again filled with new hope.
Leasa shares stories about Cody’s life to help spread awareness of autism. Image: Provided
Since he’s gotten older and I’ve learned to embrace Cody for the truly amazing soul that he is and I can say it has definitely become easier.
I still say in this journey, I am only human and I am filled with great hope that Cody will remain with us always but ultimately I can’t predict the future so I just continue to do my very best.
Cody is a true joy to have in our family and I am so very proud to walk beside him wherever we go!
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