It’s a misleading post title I know, as those of you who have been with me a long time will know this Aspergers Assessment journey has been going on for many years already. You could say it started when I repeatedly saw health visitors when Chloe was a baby, because she wouldn’t take a bottle (she never did), she wouldn’t let me brush her teeth (or tooth), or because I couldn’t wean her onto solids (she was over a year old before I got her to start eating), or when potty training caused us so much distress she would spend days crying because of her pain and need to go to the toilet but her fear of going stopped her (going back to nappies and a course of laxatives in the end). Or you could say it started when she was about two and a half and I couldn’t manage her gentle assertions and refusal to do anything I asked, and I attended a one to one parenting course to try and help me parent her better, or you could say it started when she went to school and I she was spending all her lunch times and break times alone and I was being called in daily because she couldn’t abide by simple rules (we moved schools and its all been better since then). Or you could say that the journey started when a Family Support Worker failed to support us and I went to the GP. At this point we were referred for assessment. Some months later we attended an initial assessment with a paediatrician who agreed it was worth proceeding to full assessment. The wait for which is two years in Exeter. You’ll of course know some or more of that from my last post on the subject.
Since I wrote that frustrated and angry blog post, things have changed a little, we now have a Support Worker who I connect with , who isn’t suggesting reward charts and going out more at the weekends, he understands the problems and he has suggestions I like and understand. At that time (back in January) I decided that the two year wait wasn’t good enough, things at home have deteriorated in a variety of ways, Chloe has multiple panic attacks a week now, Lola is still a victim of Chloe’s bullying day in and day out and we have been to the hospital re her teeth and lack of self care in that area, and she has to have seven teeth removed. I started reaching out to anyone I could and eventually struck gold when a Specialist ASD Practitioner suggested I go in for a meeting to discuss the situation. I have since learned that actually, the assessment process begins from this point, today, so thank god, the two year wait is is no longer the Case for us. I do appreciate that from this point in time things will not move quickly, and that in the scheme of things, we are probably low priority (although living with it day in day out, it doesn’t feel that way) so this is just another step along a very long road.
I am a ball of nerves and anxiety today myself, I don’t know how long I’ll have, I don’t know how much I will have to push, I don’t know what to expect, but at the same time I am relieved, relieved to be at the point where someone that can help us will be sat listening to what I have to say. There’s fear too, fear that after all this, they may not agree, they may not see what I see, they may not offer a diagnosis, and if that is case… where do we go from there? Does that mean there’s no reason for the issues we have? Does it mean we’re shit parents? I don’t know, I’m trying to not let those worries take over and concentrate on being optimistic, my beautiful Chloe deserves help, she deserves my positive outlook and she deserves to hear her concerns and worries are being addressed.
For other parents who are on this journey, I offer the same advice that has been given to me over the years, you will need to push and fight and keep going to get heard. Don’t stop. It will be hard, it will be exhausting, it will be stressful, but don’t give up. Don’t just settle, keep fighting for your family and for your child. Eventually, you will be heard.