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.