As we sat in the small office of the psychologist and she told us our daughter had Autism Spectrum Disorder – mild to moderate, it wasn’t a surprise. It was what I had been expecting. But still. The reality of it; to see it in writing in the report and the knowledge that this was something our beautiful darling daughter would have to deal with for the rest of her life broke my heart.
I’m so sad and so angry that this is her fate. She is amazing and strong, born fighting. She has her whole life in front of her. I want her to have every opportunity available, I would give her the world on a platter if I could. She deserves the very best life has to offer.
I understand that we caught it really early. I know she will have the the best chance with early intervention. I know there are so many services and resources out there to help her. I get that. However right now, right this second, I am so pissed off. It’s not fair. I don’t want her to have hurdles she needs to overcome, I don’t want her to have to struggle to ‘fit in’. I don’t want her to be in this bubble that she is in that we have to learn to penetrate.
I worry about her future. I worry about whether she will be able to make friends, will she be picked on? Will she need an aide at school? Will it be obvious that she is different, that she thinks differently? Will she be able to live independently as an adult? Will she fall in love? Will she even understand love? So many ‘what if’s’ that no one has the answer to right now.
So I go through the motions. I contact all the different agencies that she will need to access for assistance. I fill out all the different forms; for funding, for early intervention , for wait lists. I follow all the steps that I am told to take control of the only things I have control over. I nod and agree with people when they say how great it is we got it early, how fabulous early intervention is. And I do agree. That doesn’t make it better though, it doesn’t make it easier. It doesn’t take away the worry or the fear or the guilt.
Just like knowing that she has ASD doesn’t make her behaviour any easier to deal with. Until we start therapies I am flying blind, metaphorically hitting my head against a brick wall as I struggle to communicate with her and get through the copious daily meltdowns. The guilt I feel when I lose my temper is intensified as I know she can’t help her behaviour. I struggle to get through every day, twelve hours without a break, without any help (apart from my husband, but he is at work through the week). The stress and the worry, the fear, wears me down. I love my daughter but she is relentless, both of us frustrated that we can’t be understood. It’s overwhelming and exhausting and most days end in tears.
I know this is not our ‘forever’. We will get through this, we will get help, we will learn. We will break down these barriers between us and our child. It has only been a week since diagnosis. We are still struggling with this new chapter in our lives. I know we will move forward, with hope and strength.
In this moment though, I am exhausted. I am sad, I am angry and I am scared.