My name is Devon and our beautiful daughter Audrey is 8 years old. Audrey was diagnosed, officially with Autism when she was 7, though our journey started long before. I knew from a very young age that Audrey was not like other babies, she screamed, all day, every day. No one but myself could touch her and I could not put her down. We went through many tests and were told, that's just her personality. I felt differently but with doctors telling me it was nothing, we moved on. Audrey remained in this state till she was nearly 3 years old. Her milestones were slow but not alarming. At the time she had very little eye contact and I just thought and was told, she's shy. So I worked with her on it daily and it got better, not great but better.
When she started school we noticed her anxiety go off the charts. She became mute and withdrawn. It broke our hearts to see her in this state. We decided to go back to the doctor with all of our concerns. She did a couple questionnaire tests and pre screening but Audrey fell just slightly below the cut off to test any further. Again we were told, she's shy and it's her personality. We left shattered and feeling helpless and even more lost. We felt as though we were failing our daughter as parents. Due to how Audrey was in school she'd fallen so far behind which led to more upset and anxiety. We then just decided this was our normal and that we would do everything we could to keep her as happy, calm and comfortable as we could. As a mom though, I knew there was something else.
Fast forward to age 6. Audrey's behaviour at home became erratic. Outburst and fits like we'd never seen before. Her strength was overwhelming and she was becoming harder to get under control. We went to see clinicians for behavioural help and unfortunately it was no help. She spent nearly a year with a mental health nurse on a weekly basis, no help. By the time she was 7, we were referred to a physiatrist and she thought maybe trauma related stress due to her sister being epileptic. She recommended CBT.
A week after she had that appointment she had a meltdown to end all meltdowns. We were forced to take her to crisis. They then sent us to the hospital where Audrey was ultimately hospitalized. It was traumatizing. It was there where all the nurses where shocked that Audrey didn't have a diagnosis of Autism. From there we were referred for the ADOS and were told that it would be at LEAST 2 years waiting. After 7 years of her suffering and us feeling like failing parents, we decided to pay privately to get her assessed.
1 month after testing begun, we were finally given answers. Audrey was given her diagnosis of Autism. I broken down and I felt numb. All these years I knew there was something and it took me so long to get her the help she needed and deserved. We proceeded with next steps which then led to the OAP wait list. Although frustrating we knew it would only be a couple years and then we'd receive all the help she needs. We decided that until then we, as her parents would do everything we could in the meantime to help her.
Again though, as parents we feel like we are failing her as we simply cannot give her everything she needed. Then February 6, 2019 a devastating blow. The announcement that would end the OAP and leave us with less than $5000 a year to help our daughter. Audrey is high functioning but still requires multiple hours of ABA a week. This news left us now with anxiety and sick with worry. My husband especially. We are left helpless and hopeless. How are we supposed to adequately care for our daughter without the OAP? How can a government make such a cut without taking into account the gross negative impact that this will have. How as parents, do we hold our heads high knowing that this is the end? We are lost as to where to go from here.