It may seem that I share a lot of personal stuff on here but psssst, come close….I’ll tell you a secret – I don’t share everything.
I mentioned at the start of the year, I am going to give an honest account of our experience so that means letting you in on something I haven’t written about before. It’s about a bumpy time I went through a few months ago…
I WAS NOT COPING.
The strains of autism have made me feel completely powerless, exhausted and defeated. I got to a point where I needed help – quite literally for my sanity. I felt as though my mental and emotional health was starting to suffer. I was tearful a lot. Would literally cry at every battle we had (and everything can be a battle some days!), I was emotionally drained from the constant defiance in getting anything done, physically sore from the kicks, pinches and slaps (who knew a 4 year old could be so goddamn strong?) The silence from actual conversation was deafening. Ordinarily he should, by now be saying “Whyyyy?” after everything and really questioning the world around him. The permanent need to ask closed (yes/no) questions (and not always getting a response) was overwhelming. I was bitterly jealous of the picture perfect lives people portray through social media and of my friends with ‘normal’ children, particularly those with younger children who were now hitting milestones that for us were still out of reach – possibly always will be. Heck, my soon to be one year old has hit milestones I’ve been working on for ages with my 4.5 year old…that’s tough! I was starting to resent my child. Actually, it was his autism I resented afterall that’s what was making everything feel so difficult. SO INCREDIBLY DIFFICULT. The 24hr on call demands of autism was all consuming and it zapped everything away that I was before. I had nowhere to escape so I cried. A lot. I WAS NOT COPING. Many professionals have questioned what support I get having only seem a 5 minute snapshot of how bloody hard the simplest of tasks can be. Yet none of them offered any help when I said I didn’t receive support, as though it was always someone else’s bag. They pushed me from pillar to post always saying “…I’ll pass your details to so and so…” and all that happened was I got so confused with who knew what and I never really knew what roles everyone was fulfilling.The only after care after diagnosis was a 2 hour session about autism.
A diagnosis is LIFE CHANGING.
The entire ending to your life story changes, every chapter gets re-written to accommodate the challenges that autism brings to daily life. They liken a diagnosis to a period of grief. It’s so true, I’m not sure that will ever go.
The turning point…
I received a call from nursery one day to say I needed to pick him up. He had headbutted a table out of frustration and bust open his eyebrow and needed to go to get checked out. I remember going to collect him, tears absolutely streaming down my face.
But it wasn’t because he had hurt himself. It was because I was robbed of the extra few hours to myself, because I had to contend with the usual challenges of having him at home.
My boy was hurt and I was more concerned about not getting my free time away from him. Wow.
After that, I knew I had to get some support from somewhere. I spoke to my partner for the first time about how overwhelming everything had become and health visitors and I was finally assigned a Support Worker. All of this coincided with the birth / early days of The Small One. I was initially cautious in talking about my feelings because I knew people would automatically assume post natal depression. I knew it wasn’t that….the baby was the least of my worries, he was easy / low maintenance! For the first time since diagnosis I felt a bit looked after (although to be completely honest the support worker did very little in offering actual support, but at least she was a sounding board and just another adult to talk to in days when I couldn’t get out and about). The days started to feel brighter.
These feelings, whilst not present now are re-occuring. Christmas was incredibly difficult for me this time around, a time for spending time with family and friends. We managed a couple of stressful days with family before we packed up and headed back home early. I cried on the drive home as once again I hadn’t been able to see my best friend whom I have only seen once in a year and because my other BFF’s were having a New Years bash together and there was no way that attending would be feasible. Averaging less than three hours sleep a night was also having a huge imapct!
There are times I think will always be tough, like Christmas, birthday’s, significant milestones and of course the reminders that our child is a bit different will always be there to pay a visit and catch you off guard when you least expect it.
The reason I have shared this now is because right now I am happy. For the first time since I can remember I have nothing to worry about on the autism front and it feels good. And I know that people reading this have been in the same position. If that’s you, I am sending a massive virtual hug and telling you it will be alright. Remember to get to the rainbow we have to have the rain….but when the rainbow appears it will be so bright and beautiful that all the rain will have been so worth it.