Claire

Age: 5
Provincial Riding: Elgin - Middlesex - London
Our daughter Claire was diagnosed with autism at 2 5 years old. We noticed she hadn't been meeting the milestones like her older sister had, and we brought it up to our family doctor. Also we approached Tyke Talk. Thankfully the doctor listened to our concerns and sent us for an autism screening check. There began the series of hurry-up-and-wait appointments. Speech therapy, autism screening check, assessment for diagnosis, waitlisted for occupational therapy, multiple assessments for IBI eligibility, hearing test, assessment for eligibility for an augmentative communication device, and various parental education sessions. It feels like we waited so long for everything. Every phone call from Thames Valley Children's Centre ended in tears, being told we still had to wait. Every appointment included filling out the same forms over and over again. The stress in our household was palpable. It is a miracle we are still married. The light at the end of the tunnel was finally starting IBI therapy. We took the direct funding option, hired our own providers, and noticed a change in Claire almost immediately. Claire went from only a dozen words, to speaking short sentences. When overwhelmed and frustrated, she can communicate using her device. Claire can, (mostly) toilet by herself. She can dress herself, almost, independently. That has been with 25 hours a week of IBI therapy. She gradually was brought down to 12 hours a week. With the new OAP, we might qualify for enough funding for 1 hour a week. That drastic change will cause her to regress. What that means, is when Claire gets overwhelmed and frustrated, instead of using the coping skills she learned in therapy, she takes it out on herself, by banging her head on the floor, or throwing herself into walls, or biting her fingers until she breaks the skin. Or if her fingernails are long enough, she will scratch her face until she bleeds. If she is in school, without proper support, she WILL hurt herself, or lash out at other children, or staff. All of this is a potential nightmare, for a child that was showing so much progress. Our hearts break, knowing that we cannot provide the support that Claire requires, without the help of the government. A government that seems to have turned their back on her.

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