Tuesday, May 4, 2010

I've Been Doc'd!

Over the last few weeks, we have noticed huge improvements in Dr. Destructo. His confidence is growing as his language and understanding improves. We took on the Great Toilet Training Challenge (GTTC) and while slow, he is showing some promise. Home Tuition is incredible, I thank my lucky stars every day for his wonderful Tutor. Behaviourly the Doc is still very good except for a recent penchant for clothes removal. I think the GTTC has piqued his body awareness and he is enjoying the liberation of being naked. I have followed the advice of one of my Facebook buddies and put his fleecy sleepsuit on with zipper at back. I feel like some evil genius stroking a cat and saying 'escape this Dr. Destructo mmmwwwaahaha'.

Dr.Destructo autism means that his view of the world is different from mine. He tends to take a more elaborate route to access what he wants and as P comments, he is also prepared to play the long game. A good example of this happened yesterday.The Doc's bedtime routine consists of two bedtime stories followed by a couple of episodes of the program de jour and then off to bed. The bedtime story started off as a task where he had to listen to it to get his programs. Now we have a selection of books which he absolutely loves listening to and engages in a way that would have been unimaginable a few months ago.

Over the last few days we have had a very unwelcome but thankfully less frequent visitor, an ear infection, so we have been confined to quarters with the Doc pottering around in nothing but his pullup to keep his temp down. This of course will fuel his new found Naturalist tendencies. He was getting bored and went to his PECS folder and handed me 'I want...to watch...telly'. Not that we come from the Industrial School school of parenting but we try to restrict TV to give the Doc as much time as possible to interact with us. I explained to the Doc that telly was not available and he toddled off back to his folder. I heard the wondrous velcro sound signalling a new sentence snd I waited to see what his next request would be. 'I want...to read...A Squash and A Squeeze'. Mmm interesting.So I got down the book and we snuggled on the couch. I duly read with my usual repetoire of voices that would put Mario Rosenstock to shame. Turned last page, get the Doc's approximation of The End and he gives the book a kiss and sits back with a contented sigh. Legs tucked under and eyes focused on TV screen. I just laughed and hugged this audacious little creature who has so many issues with things that we take for granted but could show great imagination and understanding to think his way around his problem of not being allowed to watch TV. And it was all so logical, he had listened and engaged enthusiastically with his bedtime story, he had said 'The End' and he had kissed the book goodnight, so why wouldn't the telly be turned on??

Another example happened today. We have been working on getting the Doc to walk beside me holding hands to curb his bolting enthusiam. We were out walking and I kept reiterating the mantra of 'hold hands babe' and things were going well until he decided he really did need to leg it. He did his usual squirming and wriggling but I held firm. We continued the walking/squirming shuffle for a little bit when he stopped and turned to me. 'Up' he said and raised his hands. I dropped his hand to pick him up and with a squeal of delight off he ran.

As I ran after him I realised I had just been Doc'd.

Wednesday, April 7, 2010

I actually do have green eyes!

Long ago before Dr. Destructo, we were in U.S. for six months in 2003. P was there for work and I enjoyed being a lady of leisure. The odd morning after the cornflakes and before the pool, I would turn on TV while I was diligently cleaning or ironing P’s underpants. There is some great American TV programmes but the actual presentation is destroyed by endless advertisement breaks and ‘infomercials’. In particular, I was struck by the amount of ads or commercials for health products, either services or drugs. It seemed possible to pick up the phone and dial a toll free number to order drugs for any kind of ailment from haemorrhoids to heart disease. Medication that would only be available here on prescription could be freely purchased in the local Wal-Mart, which also sold guns, but maybe that was just in Texas. In addition, there was no need to go to your GP for a referral to hospital for surgery, again dial that number and charge your hip replacement to your credit card.

All of these commercials had one thing in common, an extensive and exhaustive list of possible side effects which were quickly recited at breakneck speed at the end. The side effects could be also read scrolling across the bottom of the screen, and this is where I perfected my speed reading from!! The U.S. has an extremely litigious culture so it would seem that all side effects had to be meticulously listed in case a person taking medication for migraine suddenly began to suffer from headaches. For some reason, the lists always included nausea, vomiting, diarrhoea, palpitations, loss of libido etc etc. It was fascinating and hilarious in equal doses (yes there are a some medical puns in this one so be preparation h’d). If you had the dollars you could book yourself in for surgery as easily as booking a hair appointment.

Thinking of our visit to the Prof’s cabin back at the end of August reminded me of one of those ads. The ringing and booking of the appointment, the consultation and diagnosis, and the prescribed course of Home Tuition, SLT, OT & referral to services all seemed to pass as quickly as one of those commercials for incontinence. I can hear the annoying American voiceover as we were leaving the hut listing all the possible side effects and can see the words scrolling across the windscreen as we drove home in silence. Possible side effects include: sadness, grief, depression, marriage break up, dependence on alcohol or shopping, ocd tendencies towards cleaning, in fact this diagnosis and prescribed treatment will seriously change your life. So the months have plodded on and we have endured and survived most of the side effects, but there is one side effect that has surprised me with its symptoms and immunity to all antibodies, and that is jealousy.

I remember when I was seven and roller blades were all the go. I wrote to Santa and promised to be very, very good if he would just leave me a pair under the tree. Christmas morning came and I bounded down the stairs with thoughts and images of rolling around the green on these spanking new blades with all my friends. Now I wasn’t the most graceful of children, you will never see my bare legs because my knees are destroyed with scars from many, many falls. So either because of this (or more likely because they didn’t have the money) my parents got me a pair of what can only be described as iron monstrosities. They were a version of roller skates, not blades for a start, with a metal sole that could be adjusted in and out to fit any size, with two ugly red straps. I was devastated but went outside to give them a go. The skates were strapped on over my shoes and even though I stood at the top of a steep icy hill with one of my friends pushing, the wheels refused to move. Meanwhile, my two friends were spinning around on their gorgeous roller blades as I stood with these metal yolks attached to my feet with wheels that were an insult to the caveman who invented them. The most unforgettable emotion from this memory is jealousy. I was consumed by this envy for my friends’ roller blades; it seemed to take over my life for weeks. I stashed my ‘skates’ in the black hole under the stairs and never put them on again. I refused to go out to play with my two pals until their interest in their blades dwindled and we moved back to rope jumping and hopscotch. Over the years, I’ve lost touch with these friends but if I’m visiting at home and catch a glimpse of them, to this day I can clearly remember the jealousy.

This side effect of jealously is towards parents of NT children. It’s eating me up. Everywhere I go I see parents with their little ones and I just feel so bloody jealous. It’s such a negative emotion and it leads to another extremely negative and dangerous emotion, anger. I swear I can see myself slapping some innocent mother because she is chatting away to her 5 year old in the checkout queue or swimming pool changing room. On my drive into work, I have to pass a cluster of four schools and hate getting stopped by the traffic warden having to watch all the children walking in with their parents. I am embarrassed and upset by my jealousy but I cannot seem to cure it. I need help, professional help. So it’s time to pick up the phone and make that call. My jealousy is a symptom of my reluctance to fully accept Dr. Destructo’s autism. If I can cure the jealousy I can cross the threshold into full acceptance.

So I will call 1800-ACCEPTANCE, side effects include; contentment, happiness, satisfaction, etc.

Tuesday, March 23, 2010

Flicking those switches

After my last blog which was rather negative and self pitying, I’ve decided to tell you about something which happened at the weekend which sums up Dr. Destructo’s progress since he began his early intervention in the last week of October. On receipt of the diagnosis, we immediately contacted the SENO to secure either a preschool place or home tuition for the Doc. At first we thought that an ASD playschool was the ideal solution and were delighted to find out that there was a very good possibility of a place in one locally. We cursed our luck when the four places were taken and the Doc was number five on the list. I was really devastated; I thought this is just typical of our luck. So we changed tack and began searching for a tutor. We advertised anywhere we could think of and got some replies but it was very difficult to find someone who could provide the tuition hours that suited. Our best option was three separate tutors from a local ABA school who would provide the ten hours between them in the evenings after school. It was far from ideal, from 6pm on the Doc is usually tired from the day and we spend the last hour before bedtime chilling or wandering around outside, nothing too hectic. I had no faith in this setup, but seeing as we had no other suitable alternatives I thought we would have to just put up with it.

And then our luck changed. I was checking the Special Needs board on Rollercoaster.ie and noticed a post from a parent looking for a Tutor in our area. Over the course of the virtual conversation it became apparent that the hours the Tutor could provide did not suit the original poster. So I private messaged the Tutor and she agreed to come and meet up. When K arrived in our home, it was like one of those magical movie moments where everything just clicks into place. We loved her immediately. She was warm and friendly, years of experience and very professional. Dr. Destructo of course never even looked at her, but we knew we had to do everything we could to get this Tutor sanctioned from the DOES. We got some great advice from Petunia about how to play the DOES at their own game and after some ‘reservations’ from the DOES, this angel was given the seal of approval. I pictured some hairy old crone bent over a dusty desk with gnarled fingers holding the stamp and eventually after some ego satisfying power wielding, grudgingly stamping our application form.

And so began the Doc’s home tuition. Ten hours until his birthday in January and now on 20 fantastic hours of learning, fun and life experience. We are constantly amazed at how much the Doc has improved. It is literally like several switches have been flicked on and the lights are now shining through. The big issue at the start was to find a suitable reinforcer. The Doc is not overly motivated by sweets, he can take or leave them. Because he used to have such fleeting attention, no toy held enough attraction for him to engage in a task. And then we came up with the idea of a DVD player and to this day, this is his main reinforcer. He started working for one token which gave a couple of minutes of a DVD. The Doc quickly progressed onto a token board and has to complete a lot of tasks now to get his DVD fix. K is constantly challenging the Doc and once a task has been mastered it is removed and a more difficult one introduced. At the start when we were working on the Doc’s IEP I thought he would never master any of the tasks but only last week we had a meeting and rewrote the IEP. More and more switches are being flicked every week and we are certainly enjoying the rewards. And it is not surprising that the Doc’s first word seems to be D V D.

Last week myself and the Doc went on one of our rambles around town. We usually park in the local shopping centre and if it’s fine, I pop him into his buggy and we potter around the shops and pick up some bits and pieces for his classroom. We are in the local Educational Supplies shop getting some posters and a frieze and then headed across to Mothercare. The Doc spotted a magnetic letter centre and spent ages playing with it. I’m not sure why I didn’t just get it for him but we left and headed home. That’s another benefit to his early intervention, his concentration levels have improved so much that he will spend a good bit of time on a single toy once he is interested in it. On Saturday, myself and my sister in law were in town and again in Mothercare. The shop assistant put some Early Learning Centre brochures into our bags. We headed home and the Doc was fast asleep after his exertions in the Fun Factory. When he woke up he had his usual root in the shopping bags looking for hidden treasure and he was delighted to find the catalogues. For a while he flicked through pointing things out and enjoyed looking at all the toys. Eventually he came upon the picture of the magnetic number centre. He was thrilled and keep showing it to us and doing one of his funky dance routines looking at it. I was laughing telling P about how he had been fascinated with it in the shop. For the last while, the Doc is amazed by letters and words. So he carried the catalogue around for an hour or so and as we were getting ready to sit down to look at the match, he started to wave bye bye to P and was pushing him to the door showing him the catalogue. Because the Doc is such a visual learner he has really taken to PECS. And he improvises using pictures in newspapers or on posters to request things from us. It dawned on me that he wanted to be brought to Mothercare to play with the letters. I asked him if he wanted to go and he approximated yes and went for his jacket.

On the drive into town, he kept on looking at the picture in the catalogue and only gave out when I drove past Mothercare to find a parking spot. I explained we had to park so he happily went back to the catalogue. We got out of the car and he marched, and I mean marched down the path and straight down the back of Mothercare to where the toys were. He sat down and began playing so I picked up one in a box and showed it to him. He started to carry it out of the shop but I bent down and explained we had to pay. He understands the concept of paying for things before he can have them because I have explained it to him each time we are in a shop. Of course there was a bit of a queue but he just stood beside me and waited. The Doc waited, how brilliant is that? I was bursting with pride that he understands so much now. We paid for the centre and then back to the car. He made the lamh sign for open but I just said we need to wait until we get home, which he did. Not a peep out of him and as soon as we pulled into the driveway he let me help him carry it in and he sat at the table and played with it for ages.

It seems like such a mundane and ordinary event but to us it was huge. It demonstrates how many of the switches have been flicked by his early intervention. Myself, P and K are all members of Team Doc and we will continue under the wonderful guidance of K to provide the Doc with the interventions which have awakened our little man’s consciousness, awareness, sense of fun, learning abilities, understanding and communication skills.

Monday, March 15, 2010

Am I a Mother???

This is my first blog since last October, so much has happened in between but I will write about that some other time. I just felt that by blogging about this issue, it might help me get some clarity and move on from this particular stumbling block in my journey with Dr. Destructo.

Yesterday, Mother's Day, was a bad day for me. I am annoyed at myself for getting carried away again in the trappings of another hallmark holiday which seems to only bring pain. You think I would have learned from previous occasions but no, all gung ho to have a great Mother’s Day. P off work so all set for a day of relaxing and being spoiled. The day started off ok, I woke in great form. We had been to Dr. Destructo’s cousin’s party the previous day and he had a ball. Luckily the weather was good and they have a huge garden filled with all his favourites, sand pit, blocks, rubble, sticks and there was an endless supply of buns so he was happy. Due to all the ongoing hard work being done by his wonderful tutor and ourselves, the Doc is coming on in leaps and bounds. His understanding has improved, PECS & LAMH are working a treat, he is vocalising continuously and his social interation and eye contact are all coming on. It is tough going, the teaching is continuous and is not confined to the classroom. We need to be on toes all the time but it is all fun and we are energised and encouraged from the Doc’s progress. We love singing songs and telling stories and my heart soars watching him doing the actions to Head, Shoulders, Knees and Toes.

So why am I so upset? It’s such a silly thing. The Doc will not say Mam. He will not say Mama, Mammy, Mother, even Maaaaaaaa. We can prompt him to say most sounds, the Speech & Language Therapist told us that certain letters are the last to come but M is not one of those. The Doc also has some unprompted words, bun, drink, egg to name a few and he will use these in the appropriate setting. He is copping on to the fact that words bring rewards, requests using words are celebrated and the item is handed over without question. During his tasks he can pick out random items such as watering can or apron, he learns the names of new characters from programs in an instant, he can point out the word ‘dvd’ on any publication and we are often amazed at his vocabulary. I cannot get my head around this refusal to say Mama. Is it that he doesn’t know what a Mama is? Who does he think I am? If I left would he even remember or miss me? I know he gets upset if he sees me getting into the car or leaving the house so I usually get P to distract him so I can sneak out. When I come home he is super happy to see me. Some days he is welded to me and just loves to be hugged and cuddled. If both of us are in the house with Doc, I would be his preferred option. When he comes into our bed, he sleeps on my head. When he is sick, he only wants me. We have our own little special games that we play and he hops onto my lap to initiate them. Sometimes he thinks I am hilarious and I might just be singing the 123.ie radio ad theme tune to him. I know the Doc loves me, if P goes to get him up in the morning he looks around him to see where I am. So why can’t he just say Mama? Our tutor is working hard on this; I think she knows how upsetting it is for me. When we first realised that there was a problem with the Doc, we brought him to a Speech & Language therapist and she remarked that he is just using me to fulfil his needs. This has stuck with me since that day in January 2009.

I was never a very maternal person. I love all our nieces and nephews but would only spend a limited amount of time playing with them. I certainly never had any interest in small babies. I enjoyed when they got to about six months and became chubby and giggly. Being the eldest of eleven, you think things would be different. But I would be sitting in the corner reading and my sister next to me would be feeding a younger one their bottle or dinner. I am a good big sister though, I loved spoiling the younger ones and when I started working, every weekend I would bring them home treats. So the decision to have a child wasn’t one that came naturally to me. I realised that I wanted to have a child, but just the one. P was happy with this, he is the opposite of me and really loves all children but we talked things over and decided to try for our baby after enjoying the good life for a few years. I got pregnant fairly quickly and I was hooked straightaway. Pregnancy was fine, we had a lovely time watching box sets and eating biscuits. I missed not drinking but certainly enjoyed eating all around me. The birth was tricky enough but when Dr. Destructo popped out, I fell in love with this 8lb 11oz bundle and became a mother. Or so I thought.

The Doc was our number one priority. We made sure all his needs were met and he was, and still is, a fairly placid little dude. We established a good routine which I think he has benefited from. Touch wood we have had no major tantrums to date and we can distract him easily enough when he becomes upset. Our tutor is surprised that he is so easy going but I think it is because we don’t push it with him. We expose him to all aspects of life but if it becomes apparent that he is bored or becoming stressed we take him home. He gets our full attention and we are fully committed to his Home Tuition program. As a mother, I’m not sure what else I can do. I think I have covered all the bases in providing motherly services but then again maybe my early non-maternal instincts are still lodged somewhere and preventing me from crossing the final hurdle into motherhood. Perhaps the Doc has picked up on this? I honestly don’t think this is true because words cannot express the love I have for the Doc. I would literally die for him. I have changed in unimaginable ways since he was born. I enjoy all the motherhood chores, I love dressing and undressing him. I’m not fussed when he gets dirty; I love to see him running into the kitchen to me when he has finished with his tutor for the day, covered in paint or top wet from water play. I sing Ireland’s Call to him when I am putting his rugby jersey on and he recognises the song and raises his arm to ‘Ireland’. I challenge him constantly and get him involved in baking or even emptying the dishwasher. I love nothing better than just pottering around the house with the Doc. If I’m tidying and he comes over to pull me down for a cuddle or show me something I give him my undivided attention. I rarely get cross with him and I seem to have developed patience from somewhere. So I am doing all the motherly things and enjoying all the responsibilities. I worry constantly about the Doc and his future. I am nearly fully accepting of his Autism apart from days like yesterday.

Children seem to call for their mama from an early age, it seems to come so naturally. I know because of Dr. Destructo’s ASD, things which come naturally to other children need to be taught to him. He is learning at a fierce rate but there seems to be a roadblock when it comes to saying Mama. I want him to call me when he wakes in the morning instead of whinging at his room door until I come. I want him to call me from across the room instead of pretending to fall down so I will run over to him. I have to believe that he knows I am special to him and not just a convenient care giver. I have to believe that he is not using me to fulfil his needs. I was angry yesterday and hurting because Dr. Destructo has never called me Mammy. I ruined the day for myself by dwelling on this one thing.

The good thing is we can look forward to Easter because for some strange reason the Doc is fascinated with eggs. Whenever we go visiting he checks everyone’s fridges for them, he loves to hold them, he becomes excited by the displays in the supermarkets, and we have to keep moving ours from different presses so he won’t find them. Egg is one of his unprompted words and we dance around the kitchen when he says it. But it's hard to stomach being lower down the language pecking order than an egg.

It is one thing that will truly break my heart if the Doc doesn’t call me Mam. I think I can cope with everything else. I think.

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’….