The three hours diagnosis process for my daughter was like digging into an old scar. It left me feeling very open and vulnerable. I had to relive my son’s diagnosis process as well as my own. My own was too raw so I had to recount children memories and past history it was painful and to be honest sad. Sad about a childhood I lost and the help I didn’t receive and still don’t receive. It made me feel so very sad and it hurt deep into the pit of my stomach.
So the journey started two and half years ago I was struggling to function as a mother and I couldn’t understand why. I looked at my husband and thought how can he do it, how can he be a dad and seem happy? I hated feeling like this, feeling like I am failing as a parent. I thought I was going mad. I was back and forth to the doctors trying to get help they just tried to numb me with pills in which I wouldn’t take. My mum was ill and growing up she was on a concoction of medication for her bipolar and moods that it scared me to start that process so I refused. All I wanted was someone to listen to understand my worries but I just kept getting fobbed off with depression and medication. Until I took my daughter with me and I explained that I am hurting her emotionally and I don’t know what to do it is either myself or my daughter and we need help. I was put on a waiting list for a mental health assessment and they just assumed my daughter was autistic as we have one child who is so they put her on a diagnosis list. So when I was assessed and finally got got my diagnosis and I knew then that it was me that was autistic and my daughters behaviours was because she has a mum like me and a brother like Finn. She struggles as does my husband and that’s the help I wanted to get for us as a family not another diagnosis for my daughter but they wouldn’t listen and we had to follow the rules!
So I know my daughter isn’t autistic and I didn’t need proof of this but the last two and half years have been a journey for me and my family that could have torn us apart and that scared me greatly. So when the appointment came about I knew I had to brace myself and be ready to go through everything again, the nightmares of my childhood past and the painful reminders of myself as an early mother struggling to cope in ways I am not proud of, and the hurt I caused myself and my family during that time. But I knew I had to go through this for my daughter so she wasn’t labelled and that she might get the support she actually needs.
It broke my husbands heart that I was going through this with our daughter and it scared him. He was terrified that he would be the different one in our family if our daughter had a diagnosis too. He was worried that he would be different and that scared him. I understand his thoughts behind this because that is how I feel everyday, different to everyone not quite fitting in I’m there but not really my mind is in overdrive trying to fit in and it is so difficult I have to hide in a safe place I like routines and certain areas at work and home to feel safe.
My husband didn’t break down until after we got the your daughter isn’t “autistic congratulations talk.” But it’s what they said and what we felt that my daughter wouldn’t be going through that process if she didn’t have a mum like me! That hurt me so much I find it difficult to parent a typical child and that’s just crazy but thank goodness my daughter has her father and my husband I don’t know what I would do without him.
My daughter and husband are my carers in ways that only they know and that hurts as I am a fully functional adult but struggle with the little things like going out and my nerves and anxiety but hopefully now we will get the support to help our little family and not another diagnosis but now we fit into a box to get the help! It’s crazy how the system works you have to fit into a box….