Thursday, October 22, 2009
Back to the Future
From what we have learned so far about Dr. Destructo’s autism, we know that he lives in the present. So far there is no past and no future in his world. Perhaps this will change as his communication improves and as he becomes more socially aware. We have started in earnest with the Speech & Language and Occupational therapies and have a lovely tutor beginning after the mid-term. Now that we can finally take a breather from the organisation of the interventions, we have had time to reflect on the diagnosis and how it is affecting us. The other day on the drive home from an SLT session, we were chatting away, happy that Dr. Destructo had behaved so well in the session and full of enthusiasm for the tasks set by the therapist. The conversation turned to a chat P had with a work colleague recently. The colleague was telling him about a friend who is on the spectrum and is now an adult. This chap is getting on great, he can drive, he has some part time jobs and to all intents and purposes, you would never know he was on the spectrum. P’s colleague, while trying to offer some form of hope or reassurance, finished his description by saying the only thing is you couldn’t hold a conversation with him. Hearing this was like a knife in my heart. I broke down, not just a few tears but proper snots and all crying. P was wondering what had happened to upset me so much. I foolishly had allowed my mind to go somewhere that had been strictly off limits since earlier this year. The future.
Our future is not defined. We have no idea what it holds for us. There are some certainties of course as regards work/school/bills etc but beyond this we are in the dark. Most days this is fine. But on that morning in the car it was far from fine. I cried and cried for Dr. Destructo, for us and for all our futures. I have never known such fear, even when my waters broke it wasn’t as terrifying and I always thought this was the most scary thing I had ever experienced. I was literally petrified. It was ‘the call is coming from inside the house’ terror. Hitchcock himself couldn’t portray how I was feeling.
To make things worse, we were on our way to the local DIY superstore to buy even more materials to Doc proof the house. P is now on first name basis with the staff there, they nod and smile in recognition on each of his regular visits. As myself and Doc waited in the car, I eventually managed to get the grief under control and as I looked in the mirror at the carnage that was my makeup, Dr. Destructo caught my eye and he smiled at me, he smiled at me! People talk about turning points and moments of clarity, this was one for me. I turned around and started to play one of the Doc’s favourite tickling games with him. As he giggled with anticipation and squirmed with laughter, I made a vow to keep the fear under control as much as is humanly possible. I decided to turn my back to the future and stay in the present with my gorgeous Dr. Destructo and wonderful P.
On a different note, so far we have received diddly squat from the jokers in the HSE. I just sigh when I look at our ever reducing bank balance but it is really upsetting P that they are failing Dr. Destructo. I worked in sheltered employment for many years and so am familiar with the tortoise pace at which things happen, but P was taken in by the promises of six month deadlines and the subsequent provision of services. Perhaps we haven’t helped our case as we inadvertently insulted the Assessment Officer the other day! P was calling from the house phone but was taking the number from my mobile. Of course the lock wasn’t on the mobile so while leaving a message from the house phone he was also dialling from the mobile. As he finished leaving the message, we started a Michael O’Leary type of diatribe about the HSE’s 40 annual leave days, 50 uncertified sick days, Christmas shopping leave etc when we heard a voice coming from the mobile. It was the automated voice telling us that we had reached the end of time for leaving a message. Dr. Destructo looked at us puzzedly as we broke into nervous laughter. We wondered could we dial back in and somehow delete the message? What if we called back and an actual human being answered? I was really embarrassed but P was unperturbed. The next day he calmly rang the AO again and had a twenty five minute conversation with him. Nothing happened as a result of the call, same outcome as all the previous calls over the last six months but at least there was no mention of our tirade!