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.


  1. Patricia that is such a moving blog, I hope in time Dr. destructo and Obi will be firm friends and that the light at the end of the tunnel never goes out for you all xxx


  2. really touching and very "real"...please believe that the Good Doctor will improve as time goes on. The early days are by far the hardest and it will get better.The pup is gorgeous and your little man is fab. love the blog xxx

  3. Well Done...Loved it.I know that we are at different stages of this "adventure" but I just wanted to say that I really admire your strenght and courage to write this blog.If you keep writing I will keep reading xx

  4. I have tears in my eyes reading your blog post. It brings me back to the early days post diagnosis with Munchkin so can relate to what you have beautifully and eloquently written. It is early days though chick, and this time next year you may look back and be astonished how far you have come. I did just that over the last few weeks and can't believe the difference. With regards the tutting and disapproving looks from others at times, I have learned to grow a hide as thick as an elephant... it helps :)


  5. Dr Destructo is doing fine! Mummy just needs to give herself time to get used to the new life she has found herself living and maybe with time, forget about the old one.

    It is nonsense about the advent calendar too! If you go to my blog and the link to the ebay lady "Shakaids" who makes her own visual schedules you will find charts to teach the difference between morning, afternoon and nighttime, and calendars for teaching weeks and months. Start small with First and Then and grow it bit by as is relevant to The Docs needs, not yours. If you are planning a very rewarding event - such as a visit to Greystones Beach (it isnt called grey STONES for nothing) then put up the activity that precceeds that as the First, and then a picture of the beach as the THEN. He will quickly pick up the concept if it is presented VISUALLY.

    Words Shmerds! Always use the Visuals in his world. Get the ADVENT calender, and hand over hand open it each day, TOGETHER. Our kids love rituals and I guarantee you by this time next year he will be running down the stairs each morning to open next year's calendar with you.

    As for the eyebrows and comments from Auld Wans? you have 3 choices. 1. Ignore them 2. Smack them or 3. Say "He has AUTISM. and then roll your eyes at the nearest sympathetic person as if to say "Some people are so ignorant"
    Seriously, people wouldnt DARE say that about a child from the Travelling community or another ethnic group, but somehow being white and middle class gives people the licence to criticise. And if you do say it, you will be one more person aware of autism and less likely to judge another new mum.

    Try it - and if it doesn't work there is always option 2.


  6. Lovely and very moving post. Your little boy is gorgeous and the puppy too, of course!

    You are at the start of your journey which is very difficult indeed. But, please, please have hope. You are getting in there with interventions and slowly but surely you'll see improvements. Over time.

    We've made massive improvements yet wiiBoy is still attracted to stones and he's almost 10!! Stones are to be played with and collected!

    I wish you so much luck on your journey. xx Jazzy

  7. Yer amazing missus u know dat. Yer posts are very moving i'm here in tears. D doc has wonderful parents, every step in his development and that handsome cheeky smile he gives u will build yer strength every single day. It's not an easy road ahead for either of us, but take each day as it comes some will be good others hard. On the hard days reflect on how d doc has made u happy and all the times he makes u laugh. He has 2 parents who provide a universe if love for him which will be the backbone of his development. U can count on us for support anytime anyday xox. Michelle