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!

6 comments:

  1. hahaha! the joys of technology!
    love love love this post. i'm not that long past the overwhelming grief stage, but it does pass. It does, unbelievably, become "normal"
    thinking about the future is dangerous territory, and yet as responsible parents we have to do it. the only small bit of advice i would offer is not to try to eat the whole pie at once (it'll give you awful indigestion and probably bung you up too for good measure), but to nibble on each small slice as it comes. another wise lady has blogged aplenty on this (take a bow your Hamminess).
    as for the crying...i never learned to cry prettily either...i'm also a snot (and giant red nose) girl. in fact i didn't wear mascara for about a year because i thought the ISPCC would come to my house with nets looking for the deranged panda.
    you have a great sense of humour missus, y'know it seems the best comedy comes out of heartbreak. thanks for a fab post xxx

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  2. Excellent Blog P! Our kiddies need us in the here and now and everything we do for them everyday prepares them for a much more positive and fulfilling future. Love the piece on the message ..... don't think you've anything to worry about - I doubt they even listen to their messages LOL!!! EmmaR

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  3. Oh my god, the rain is falling outside and now I'm crying and laughing reading this as sometimes it feels like you could be writing about MY son that it rings so true.

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  4. Another great post, thank you:) Someone asked me a question about my son recently, to say I was shocked is an understatement. The question itself was not shocking, the split second the future flashed before my eyes WAS and still is. The question keeps sneaking up to me and saying "ha, you think you can ignore me??!!" I am doing my best to do just that:) One step at a time...............Jennefer (FB)

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  5. I was laughing and crying reading this. I no d futures not an option at d moment for ye but I can look into the future and see it.. Memoirs of Dr. Destructo best seller... ur blogs are amazingly written.
    Don't ever give up hope, as Albert Einstein says 'Learn from yesterday, live for today and hope for tomorrow'. What you want for the Dr. should be for him to be fulfilled as he would like to be fulfilled, Not your or any1 elses idea of fulfillment, but his. He's an amazing, happy and inspirational child.
    Keep in mind your family will always be here to support the three of you, you have to just make space to let us in :)Brigie:)

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  6. At the same time as hurting for you, don't look so far ahead gel! - I can also laugh at that phone call. Brilliant!!! I hope the AoN officer was ashamed when he heard it, and set out to actually do his job. xx
    ps. Boo didnt say a word to me until he was 4. But now we can't shut him up.
    "in a question what's a lighthouse?, what's Rockwell, Drive to Rockwell......... "

    So don't be looking through a glass darkly just yet. xx

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