31st August 2009 the day Dr. Destructo got his label.
When the Prof diagnosed ASD, we met it head on with a mixture of utter sadness and relief. Sadness that our fears were confirmed, relief that it wasn’t worse than what we expected. Since January we had been on a constant surveillance operation of Dr. Destructo, every little behaviour was analysed to within an inch of it’s life, cross referencing website after website to see which traits we could credit as being ASD and which traits were just those of a ‘normal’ toddler. Behind all the surveillance were some damning pieces of evidence, no words, comprehension limited, zero imaginative play & peculiar social interaction. Then there were the positive days when we convinced ourselves that all was ok, it was just a speech & language delay and when this was sorted everything would fall neatly into place. It is only now on acceptance of the diagnosis that we can move on with getting the services and interventions needed for the Doc to reach his full potential. The underlying heartbreak is ever present, but the practical needs sorting.
Did I ever imagine that our lives would be like this? Constant phone calls, forms, emails, appointment after appointment. It’s been a whirlwind since the end of August; we are familiar now with the all the acronyms, we have learned of a whole new parallel ASD universe and ‘met’ the most amazing people who we now count among our closest friends. Everyone we have spoken to either in reality or virtually have been most helpful and supportive. Information is shared freely and advice is given wholeheartedly from those who have experienced similar. Without all of this, we would find it a lot harder to cope. Robert Frost wrote of the road less travelled…I am glad that we are travelling this road with our trusted companions. Ok, it’s not what we expected when we had our beautiful son in January 2007, ok we need to adjust our hopes and ambitions for the Doc, but I know in my heart that we will survive the challenges, a knowledge borne from the inspiring stories of our new friends. When I read about their full and happy lives, albeit with extra challenges, it inspires me to keep going with our work.
Our family and friends have been sympathetic but they honestly do not realise what the diagnosis means. For some they still think once the talk starts everything will be grand. I wish people would realise how hurtful it is to hear the words ‘he’ll be grand’, it’s like fingernails on a blackboard it grates that much. Please god he will be ‘grand’ but it is going to be a different kind of ‘grand’ to his counterparts. I have seen my Dad looking at Dr. Destructo since we told them of the diagnosis. I know he is struggling to understand, he sees a fine, healthy toddler who eats all around him, laughs, cries, loves dogs, loves Bob & Fireman Sam, is generally well behaved, just potters around not causing any trouble, so he’s not talking but his cousin didn’t say a word until he was 3 and you can’t shut him up now, he can get whatever he wants/needs….insert loud claxton noise here! Earlier today when myself and the Doc were playing in the sitting room, it just dawned on me how to explain it to my Dad, in as much as I am only starting to really understand ASD myself. Dr. Destructo wanted to hide in the curtain, he likes to twist himself around in it and then gradually comes out when I start looking for him. However, he is in danger of pulling the curtains & pole down with him so I was trying to keep him away. Instead of asking me to move out of the way so he could get at the curtain, he used his ‘falling down’ technique. He moves away and pretends to fall down. Then he looks up dolefully at me until I go over to make a fuss of him and see if he is ok, at this point he scarpers back to the curtains. He will use this technique regularly if he can’t access my hand to lead me to whatever it is he is looking for. As soon as I go to rub his cheek, he will then grab my hand. It’s probably quiet clever but it is also quiet sad that he goes to this length instead of just saying ‘Mammy can I have a loop de loop already’. In order to avoid direct communication or more likely because he operates on a different communication continuum, he uses this elaborate technique.
The ASD diagnosis while not an excuse for the Doc’s behaviour is an explanation and this has been helpful. Instead of agonising endlessly on why he is suddenly covering his ears when he doesn’t want to hear what we are saying or squints his eyes shut when he wants to become invisible, we can make note and move on. We can now embrace and celebrate every little victory and cherish our time with Dr. Destructo, instead of constantly asking why is he not talking, why does he find it so hard to communicate, why will he not play with other children….instead we will just say ‘and so he pretends to fall down’….
When the Prof diagnosed ASD, we met it head on with a mixture of utter sadness and relief. Sadness that our fears were confirmed, relief that it wasn’t worse than what we expected. Since January we had been on a constant surveillance operation of Dr. Destructo, every little behaviour was analysed to within an inch of it’s life, cross referencing website after website to see which traits we could credit as being ASD and which traits were just those of a ‘normal’ toddler. Behind all the surveillance were some damning pieces of evidence, no words, comprehension limited, zero imaginative play & peculiar social interaction. Then there were the positive days when we convinced ourselves that all was ok, it was just a speech & language delay and when this was sorted everything would fall neatly into place. It is only now on acceptance of the diagnosis that we can move on with getting the services and interventions needed for the Doc to reach his full potential. The underlying heartbreak is ever present, but the practical needs sorting.
Did I ever imagine that our lives would be like this? Constant phone calls, forms, emails, appointment after appointment. It’s been a whirlwind since the end of August; we are familiar now with the all the acronyms, we have learned of a whole new parallel ASD universe and ‘met’ the most amazing people who we now count among our closest friends. Everyone we have spoken to either in reality or virtually have been most helpful and supportive. Information is shared freely and advice is given wholeheartedly from those who have experienced similar. Without all of this, we would find it a lot harder to cope. Robert Frost wrote of the road less travelled…I am glad that we are travelling this road with our trusted companions. Ok, it’s not what we expected when we had our beautiful son in January 2007, ok we need to adjust our hopes and ambitions for the Doc, but I know in my heart that we will survive the challenges, a knowledge borne from the inspiring stories of our new friends. When I read about their full and happy lives, albeit with extra challenges, it inspires me to keep going with our work.
Our family and friends have been sympathetic but they honestly do not realise what the diagnosis means. For some they still think once the talk starts everything will be grand. I wish people would realise how hurtful it is to hear the words ‘he’ll be grand’, it’s like fingernails on a blackboard it grates that much. Please god he will be ‘grand’ but it is going to be a different kind of ‘grand’ to his counterparts. I have seen my Dad looking at Dr. Destructo since we told them of the diagnosis. I know he is struggling to understand, he sees a fine, healthy toddler who eats all around him, laughs, cries, loves dogs, loves Bob & Fireman Sam, is generally well behaved, just potters around not causing any trouble, so he’s not talking but his cousin didn’t say a word until he was 3 and you can’t shut him up now, he can get whatever he wants/needs….insert loud claxton noise here! Earlier today when myself and the Doc were playing in the sitting room, it just dawned on me how to explain it to my Dad, in as much as I am only starting to really understand ASD myself. Dr. Destructo wanted to hide in the curtain, he likes to twist himself around in it and then gradually comes out when I start looking for him. However, he is in danger of pulling the curtains & pole down with him so I was trying to keep him away. Instead of asking me to move out of the way so he could get at the curtain, he used his ‘falling down’ technique. He moves away and pretends to fall down. Then he looks up dolefully at me until I go over to make a fuss of him and see if he is ok, at this point he scarpers back to the curtains. He will use this technique regularly if he can’t access my hand to lead me to whatever it is he is looking for. As soon as I go to rub his cheek, he will then grab my hand. It’s probably quiet clever but it is also quiet sad that he goes to this length instead of just saying ‘Mammy can I have a loop de loop already’. In order to avoid direct communication or more likely because he operates on a different communication continuum, he uses this elaborate technique.
The ASD diagnosis while not an excuse for the Doc’s behaviour is an explanation and this has been helpful. Instead of agonising endlessly on why he is suddenly covering his ears when he doesn’t want to hear what we are saying or squints his eyes shut when he wants to become invisible, we can make note and move on. We can now embrace and celebrate every little victory and cherish our time with Dr. Destructo, instead of constantly asking why is he not talking, why does he find it so hard to communicate, why will he not play with other children….instead we will just say ‘and so he pretends to fall down’….
Great first blog, well done to you. Doc Destructo is a lucky boy to have you!
ReplyDeleteAndra xxx
What a fantastic start to your blog! I can totally relate to what you have written and boy, did you write it well :) I can't wait to read more xxx
ReplyDeleteThat's great theory of mind you both have there Missus!
ReplyDeletehe has worked out how to get you to do things and you have worked out that he knows this. Score is 1:1.
You have got to this point really early! sure we were all marchin on the streets and appearing in current affairs shows while Dr Was still a twinkle in your eye! and here you are connecting and expressing and getting on with getting him what he needs.
Try making a curtain twirl card. Make him give it to you to get to the curtain.
Oh, and replace the curtain rod with one that can safely fall down. (you can get spring loaded ones)
This is the beginning of social interaction and needing you to do something he likes. Feck the curtains!
xx
Great first post!! Big welcome to Dr Destructo...he's great. So clever too ...he's found his own way of communicating with you. Now you have a diagnosis you will help him expand on this and he will indeed be "grand"!! That is infuriating though , isn't it?!!
ReplyDeleteYou've taken an amazing giant step on your way forward. Good luck and I luck forward to hearing more. xx Jazzy
I loved reading your first post...what a bright little fella you have. as jazz said, his intelligent (if elaborate) way of getting his needs met is breath taking.
ReplyDeleteIt brought me back to my own son's diagnosis (a mere 2 years ago) and how our life has been catapulted at warp speed from happily raising 3 kids and worrying about decorating the house, to negotiating "special" education and a dizying array of appointmemts.
I am so looking forward to more of your thoughts! XXX
A great start – but I expected nothing less from such a wonderful lady
ReplyDeleteI love the idea of the twirl card, we had a talking teddy bear !! and Dr Destructo has perceptive parents.
It is very hard to be patient with family and friends, especially early on and I know I used to get very frustrated. Now I tell myself that only those who care about you will say the “wrong” thing – those who don’t care, will say nothing at all !!
Remember, Dr Destructo has not changed at all, only our perception of him has changed
Good luck on the road ahead