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!

Wednesday, October 7, 2009

Great Expectations...more like Hard Times

So with all the drama surrounding the diagnosis of ASD and the subsequent realisation that every waking second is now being taken up with form filling, phone calls and appointments sandwiched between tears and worry, we decided that we needed some distraction. I finally agreed to P’s constant pleas to get a puppy. It will be brilliant for Dr. Destructo he declared, they will be great pals and look how much he loves other dogs etc etc. We had already decided on a King Charles because Dr. Destructo’s childminder (who is a real life Angel) has one. The Doc will spends minutes (because in Dr. Destructo’s extremely short attention span world, minutes spent on one thing is huge) chasing and playing with him. Polled the potential names on Facebook, I wanted Peadar, P wanted Obi, Obi won. That’s the second time I have been vetoed on Peadar, I had submitted it to the baby naming committee but it was dismissed then also. We found a cool website where we could enter the make and model and within seconds, literally dozens of little puppy dog eyes were looking out at us, saying ‘pick me, pick me’. New batch born locally so immediately phoned and arranged to call over and select our new family member.

Myself and P were so excited, I played the scene out in my head over and over again. Short drive over, building up the suspense with Dr. Destructo by just telling him that we were going for a special surprise, arriving at the house and watching as the realisation dawned as Dr. Destructo looking up at us, as if to say ‘am I really getting a puppy?’. Watching as the Doc and Obi shared their first cuddle with the dog owners happily looking on, knowing that one of their precious litter was going to a really good home. I pictured the lovely old dears waving at us from the front door as we drove off with our lists of things needed for Obi’s homecoming in a couple of weeks.

I remember reading somewhere that any suggestion that reality is what we perceive to be real means that by making such a suggestion, we claim to be able to manipulate or change objective reality. In this instance, the reality jumped up and slapped me in the face, and there was no way that I could have manipulated or changed it. The drive over was a disaster. Dr. Destructo gave out at every intersection when he realised that we weren’t going where the lifts were, we weren’t going to my office where you-tube is and we weren’t going to the building where the large climbing frames are. Because of his limited understanding, it is difficult to console him by offering an alternative to what he expects, particularly in the car. When we got to the house he became enthralled by their washing machine, slightly different model to ours so different buttons to investigate. The nice people tried to speak to him and show him the puppies but to no avail. The single-mindedness that is part and parcel of the diagnosis while accepted by us, is met with raised eyebrows by others. P tried to pick up Dr. Destructo and bring him over to the patio but again, ‘crabbing’ and more giving out. (Crabbing is our term for how the Doc arches his back and uses his whole strength to avoid being picked up) At this stage we were both sweating and couldn’t concentrate on the tips and advise being imparted by the owners, who all the while were looking on at Dr. Destructo with puzzled expressions. Just as we looked for a sharp exit, Dr. Destructo spotted perhaps his most favourite things in the garden, stones. He legged it across the garden, expertly negotiating the steep steps and avoiding potential hazards such as flower pots, and within seconds was gathering them up, selecting and then disgarding in favour of a more acceptable pebble. At this point, I knew we were in trouble. I frantically checked my pockets for a lollipop which I usually carry with me and which has saved the day on several occasions. None there, great! At this stage, every second seemed like an hour and there was an awkward silence prevailing. For what seemed like an eternity, we stood there motionless, both of us panicking and becoming more and more anxious. Dr. Destructo meanwhile was surveilling the garden looking for more adventure. My heart sank even further as I noticed the shed door was open. Sweet Jesus, he was going to make a break for it. The sight of all the garden tools and paint tins finally got us moving. P went over and caught Dr. Destructo by the hand and whispered something into his ear. Next thing, P and the Doc are making a bee line for the door, stepping over the basket of puppies and I am left to sort out the deposit and arrange the collection day. I hastily gave the owner my mobile number and told him not to worry about the receipt. I knew that whatever P had whispered to Dr. Destructo meant I had only a limited time to get out and get the car moving before he started to get upset. I had a fair idea that it involved food so needed to get going. As suspected, P had asked the Doc if he wanted to go for ice cream so that was enough to distract him from the adventures in the garden. Not a peep the whole journey home Dr. Destructo has a one track mind and he was on the track to ice-cream.

As I sat at home watching him enjoy his pop, two issues were going around my head and have been ever since. Firstly, I know Dr. Destructo is only interested in the present; there is no looking forward, no counting down the sleeps, no pacifying of upset with promises of future treats, no planning ahead with him. A recent trip to the shops ended up with me in tears over the sight of advent calendars. It’s just another part of the ASD that we have to deal with, but it’s a surprisingly tough one. It should pale in comparison to other more serious aspects but for some reason, it’s really heartbreaking. Perhaps because it’s a shared experience I cannot have with my son. It may improve with intervention but in these dark days it doesn’t seem likely. There is a lot of encouragement from other parents, especially among the Facebook gang, who are delighted with the results of therapies and interventions, but we are just at the beginning of this so no major improvement yet. There is hope, I have to believe this or otherwise life will be unbearable. I took great solace from Lucy & Luke’s news last week; it really lifted all our spirits.

The second concern at the moment is regarding other people. A wise woman has blogged on neural otherness and while this is an admirable quality, I fear it is severely lacking in many. I have had several tut tuts and disapproving looks in shops when Dr. Destructo is vocalising for something or refusing to allow his treasured item to be scanned. One lady in a book shop actually said he was 'too big for that kind of thing’. It was just before the diagnosis and rather than put her straight, I just became flustered and left. I regret that I didn’t stand up for my child that day but it is something that will never happen again. Our children have enough challenges without having to deal with the ignorance of others. It is one battle we can wholeheartedly fight for them. The kindly dog owners were perplexed but they were very nice and just wondered if perhaps Dr. Destructo was afraid of dogs. I wanted to make excuses for him, I don’t want anyone to think badly of the Doc but I cannot spend my life explaining about ASD to every one we encounter. If our family and friends understand and accept Dr. Destruto with his challenges and special needs, that is the most we can hope for. As Dr. Destructo becomes even bigger and his powers become even more super, it is going to be tough enough for us to cope with him and help him without worrying about other peoples opinions. ASD is just one aspect of Dr. Destructo, he is still the same little boy who brings us so much joy and happiness. With the prevalence of ASD, more and more people are becoming educated and this cannot be anything except positive.

Obi has settled in well, there is a tentative friendship between the two but like a lot of things in Dr. Destructo’s life, it is early days. I hope that as their friendship grows, Dr. Destructo will also start to improve and progress with the help of all the intervention we can provide. We are still in the tunnel but are now looking towards a definite light. The light may flicker and some days may even seem to be off, but the unending love we have for the Doc will turn it back on.

Thursday, September 24, 2009

And so he pretends to fall down...

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’….