Bah Humbug

Each year I write about how for me Christmas is a time reflect on all the things I am thankful for. I then set upon writing down new resolutions for the New Year, filled with hope and prosperity for the year to come. This year, however, I just can’t seem to get into the holiday spirit and just want the year to end as quickly as possible. It has been a terrible year for illnesses, and my four-year-old daughter has been going through what I can only call the ‘terrible twos’: tantrums, hair pulling, the works. She had pulled the Christmas tree down so many times that a week ago I packed it away and brought out a little 4ft tree that I literally tied to the table, threatening all the while that all she was getting for Christmas was a lump of coal. Thwarted from pulling the tree over she has now discovered she can pull the little light bulbs out of the Christmas tree lights. I’ve now been threatening to take that tree down as well.

And at the moment I can’t even escape the family meltdowns by grabbing a nice quiet coffee at my favourite café at the local shopping centre. After taking twenty minutes to find a park I line up for another twenty to order a coffee only to find all the tables already taken by, in the words of Tom Hodgkinson, other grim-faced toilers, all the while listening to Christmas carols blaring out of the speakers.

With Christmas decorations already cluttering the aisles of department stores in September (and lets not forget the Christmas Toy Sales in July) I feel like I’m beginning to suffer from holiday fatigue. In the wise words of Ebenezer Scrooge: bah humbug. I’ve even suggested to Mum about cancelling Christmas this year. This of course, did not go down so well despite the fact that she has been dragged to every toy store in Brisbane over the last month by my father looking for the perfect present for my daughter. All my suggestions of course have been meet with deep scepticism.

I long for the days when a simple garland of popcorn and scavenged pinecones where acceptable decorations for the tree and not those garish, overpriced pink and purple creations that seem to be so popular today. When stockings were the size, of well, stockings and not those licenced sacks that just beg to be filled with soulless bits of plastic. When family gatherings were a time to count our blessings with the ones with love and not a simply a time to show off our latest acquisitions. To put it simply, I want out of this consumer lifestyle.

Sleepless Nights

It’s going onto two am. My daughter is restless, she won’t sleep. Giving up trying to get her to bed I’ve made her a warm drink and put on a soothing DVD, thankful I don’t have to work today. I don’t know how I’m going to go in a few weeks though when my night shifts swing to five am starts. At least at the moment I can usually get in an extra hours sleep before she starts demanding breakfast (usually by jumping on me). She is a different child to last weekend when she was admitted to hospital and a drip placed in her arm. After sleeping for fourteen hours straight I was only able to rouse her long enough for her to drink some water and then promptly throw it back up again. Thank God for the warmer weather. This winter has been the worse one for illnesses since Elizabeth was born. She has practically taken every second week off school this term. I just hope this is building her immune system up for prep next year.

Floortime

Yesterday my daughter had her first appointment with her new Occupational Therapist, Priya. Unlike previous therapists who were usually straight out of university, Priya has fifteen years experience working with Autistic children. She employs Floortime, which is a specific technique to follow both the child’s natural emotional interests (lead) and at the same time challenge the child towards greater and greater mastery of the social, emotional and intellectual capacities. With young children these playful interactions may occur on the “floor”, but go on to include conversations and interactions in other places (http://www.floortime.org/). Elizabeth was very engaged with Priya from the beginning and whilst occasionally she would drift of to investigate the room (as she always does) she always kept a surreptitious eye on Priya. For the moment we have thrown out PECS and have gone back to getting Elizabeth to initiate communication, in this instance requesting ‘more’. Whilst Elizabeth is good at ‘leading’, that is taking our hand to where she wants to go, she rarely initiates play and if she does it is usually to give her a piggy back which is not a good activity for communication. So as of today, I will be implementing five, twenty minute Floortime sessions a day (well, that is the goal anyway) and hopefully in a few weeks we will be able to start back on PECS.

Winter days

Every year around July, the endless, dreary days of winter bring on a melancholy of spirit that is hard to shake. It is not the cold. It is the greyness, the lack of light that affects me. But just as I thought I could not stand yet another rainy, overcast day I woke up this morning to sun streaming through my bedroom blinds. Making the most of it I threw open all the windows, letting sunshine flood the house. Soon the rooms were filled with the earthy smell of eucalyptus and sun-warmed grass.

After breakfast I put on one of my daughter’s favourite CD’s and danced to Justine Clarke, my daughter squeezing her eyes shut as she spun around the room. After a morning tea of avocado on toast and yoghurt, instead of clearing the table for table tasks as we normally did I left the dishes as they were and upended a large box of blocks onto the lounge room floor. As I lay on my belly building towers blocks, Elizabeth banged them together or jiggled them by her ear, occasionally knocking the towers over with a squeal of delight. Afterwards we lay in a patch of sunshine as I read her stories and sung her nursery rhymes. For lunch, instead of having the winter fare of soup and crackers we shared a plate of mini sandwiches, fruit and cheese, picnic style.

As Elizabeth dozed on a full belly I sat down and begun to write, the first real writing I had done in weeks. Being only July, I know that winter will all too soon re-assert herself, but if we are graced with the occasional day such as this I think I might just get through it.

Reading Magic

I feel the closest to my daughter when I’m reading to her. I love watching the look of utter delight on her face, the way she shakes her little hands when she is excited, the way she hits the page signalling ‘more’. Being non-verbal, the ability to read is very important, so I have tried, since she was very little, to read aloud to her six to eight books a day (sometimes more on a particularly good day). That is why when I was perusing the local bookstore I was instantly intrigued when I came across the book Reading Magic by Mem Fox. A huge fan of Mem Fox books I immediately bought it. When my daughter lay down for her afternoon nap I made myself a cup of tea, put my feet up and was instantly absorbed. It is only a small book and I was able to complete it in a couple of hours. She writes that if parents understood the huge educational benefits and intense happiness brought about by reading aloud to their children, and if every parents read aloud a minimum of three stories a day to the children in their lives, we could probably wipe out illiteracy within one generation.

In regard to myself, she was preaching to the converted but I thought back to discussions I’ve had with one of my good friends, an early childhood teacher. She mentioned that at the beginning of each Prep year there are those children (more then you would think) who had never opened a book or picked up a pencil. I find this utterly inexcusable as reading aloud to your child, especially with access to so many good libraries nowadays, is totally free. Of course, there are those parents who are illiterate themselves. My response is, what a wonderful time to learn to read. There are many great initiatives run by the government that offer free advice and services.

And those parents with special needs children like myself who have refrained from reading to their child because the child has been completely unresponsive please persist because the reward is so worth it. It took a year reading to her on a daily basis before my daughter showed any interest in books (and believe me I felt extremely disheartened at some stages as she often appeared to drift off in her own little world. But of course, I now know differently). But now at four years of age, my daughter finds enormous pleasure in reading time. Of course, she will always have her off days when her concentration starts lapsing after the third book but on most days I can now keep her engaged for up to six books at a time. The secret of course to keeping reading time enjoyable is by reading expressively, be animated (I wrote one time that a friend’s speech therapist was so boring that her child would fall asleep during the consultations). Secondly, forget the “lesson” aspect of reading. Reading aloud together should be fun. As Mem Fox writes, entertainment is the teacher. Teaching before school kills the fun. Children like their parents to be parents, writes Mem, not teachers. We are after-all, trying to encourage children to love reading and they won’t love reading if it isn’t fun. And lastly, buy beautiful books. My most recent acquisition is Lost and Found by Oliver Jeffers. A book about friendship, I must have read it at least twenty times and I still get choked up at the end. I don’t know whether my daughter understands the moral of the story but she seems captivated every time I read it. And those writers out there who don’t read to their children, shame on you.

Blessed to be a Mother

It has almost been a month since I last posted. Gee, doesn’t time fly. At the moment I’m sitting in the backyard in the early afternoon sun, watching my daughter as she flits from the garden to the swing to the clothesline. She never stays still. It is delightful to watch. At fours years of age the world is still a wonder to her. It has been six months since I took over her therapy and she is going well. She has now started making tentative sounds that are starting to resemble words and her understanding has greatly improved. She is also able to sit for table tasks for much longer periods at a time (but then again, I try to make them fun). She is also becoming more and more interested in books. She will now sit absorbed for up to six books at a time (thankyou Mem Fox). And going by the adage ‘always presume intellect’ I’m sticking to age appropriate books and not books that are seen to be more appropriate for her developmental age (I mean until she starts communicating who are we to assume what her developmental age is). This seems to be working. 

She also seems to be much more interested in what I am doing. Often when I’m sitting at the computer she will come over and rest her chin on my arm and watch me type, I’ll read back to her what I have written and point out the words on the screen. And she loves to watch me cooking. I use this opportunity to show her the different vegetables and give her morsels to sample. Whilst she has eating difficulties she is not a fussy eater. She will always try everything I give her. This morning I got her to help me water the pot plants which, water baby that she is, just loved. 

Last night I heard her whimpering in her sleep. I lay down beside her and started hushing her to sleep until I realised that her pants were soaked through. Changing her into clean pyjamas and changing the sheet I lay back down beside her. She gave me a beautiful smile as if to say ‘thanks Mum’ and drifted back to sleep. I felt truly blessed to be a Mother.

A misty morn

These photos were taken at 0700 this morning, as you can see a thick fog blankets everything. This type of fog is a rarity in the outer Northern suburbs, hence the reason I took the photos. It was quite a pleasant way to wake up, with mist clinging to the screens and the drizzly greyness making it necessary to turn on the lamps. It was quite cosy really.

Yesterday I had some friends and neighbours over for my daughter’s fourth birthday party. I also invited my nieces, but my brother, being the unreliable individual he was, did not show. Despite this disappointment, the day was quite relaxing and the children had a ball, the lounge room looking like a tornado had whipped through it by the time they all had left. But with the help of my Mum, it took less than half an hour to put everything back in its place. On Elizabeth’s actual birthday her Grandparents and I plan to take her to the beach (she just loves the water), with a detour to her favourite toyshop.

It is now going onto 0900am and it looks like the fog is finally dissipating to reveal another glorious autumn day. This morning I plan to go through a couple of table tasks with my daughter before getting ready for work. I cannot wait for the day when I can just laze around on a Sunday, although with my daughter sleeping in till 6am for a change this morning it has been quite pleasant so far.

Happy Easter

Many modern Wiccans and Pagans celebrate Easter as a time of renewal and rebirth. Derived from the word Eostre (also known as Ostara), an ancient Anglo-Saxon Goddess, she symbolized the rebirth of the day at dawn and the rebirth of life in the spring. Not particularly religious, the Pagan celebration of Easter has a certain appeal to my romantic sensibilities. This has become even more poignant in recent years as my daughter was born during Easter. During this special holiday, we are urged to take some time to celebrate the new life that surrounds us in nature, to walk in a park, lay in the grass, or to hike through a forest mediating upon the ever-moving wheel of the year that is the changing of the seasons.

Table tasks

This year I’ve taken upon my daughter’s therapy after a very disappointing (and expensive) year last year. Through the Autism initiative I attended the PECS workshop in February and have since implemented Phase I. Elizabeth’s grasp of it is coming along slowly but I think that has got to do with stubbornness then anything else. Sometimes she will hand a card over to me to request something, but other times when I hold my hand out for the exact same thing she flops onto the floor and acts like I’m torturing her. I’m determined to persist however as a form of communication is one of the most important things to have for some kind of quality of life, especially as she gets older. As I’m writing this Elizabeth took my hand over to the gate that blocks off the kitchen and handed me the kitchen card. I have a special draw for her that is filled with Tupperware, which she just loves playing with. Depending on how well she does the exchange (for example, how much prompting was needed) determines how long she gets to play in the kitchen. This time all was needed was a light touch on the elbow to remind her to give Mum the card.

Another activity I’ve been doing is table tasks. After watching five different Speech and Occupational Therapists over the last two years I decided that I could do a much better job. In her PECS folder I have about twenty different table tasks, these include puzzles, play doh, computer time, story time, singing time etc. I select five of these activities at a time and stick them on a schedule board. Once the activity is finished, we put the card into the finished box. We only sit at the table for about half an hour at a time, which is pretty much Elizabeth’s attention span, which I think is not too bad for an autistic child going on four. I choose activities that she finds fun like singing time and bubbles, interspersed with things she hates like drawing. Since I started these table tasks I find Elizabeth has become much more interested and engaged in what I am doing.

My parents have been absolutely wonderful too. When I go to work they often take Elizabeth either to the park, beach or library. Today they are picking her up to take her to the shops where undoubtedly her Pa and her will get up to some kind of mischief. Yes, Elizabeth still does not speak but she is becoming much more vocal and babbling a lot more and it does not seem long off that she will start saying her first words (her therapist last year told me to stop wasting my money). At school on Wednesday they had a taste testing session and I’m quite pleased to say that Elizabeth tried everything. Considering she was just learning to chew a Clix biscuit at the age of two she has come a long way. So far I do not regret for a moment ditching the therapists, except for those I see as essential like her Physiotherapist for her toe walking. What I can’t provide my daughter the school has stepped in. And of course I still have some moments or weeks where I feel totally overwhelmed, but at least now for the majority of the time I feel more in control.

A Fright

Being such a beautiful day yesterday, I threw the curtains wide and opened the blinds to let in the warm sunlight into the living room. After a short bout of illness, Elizabeth seemed to her old self again, content to play with her toys whilst I updated her PECS folder and downloaded some educational software off the internet. The pace was a nice change to last week. That is, until someone walked past the window giving her an enormous fright. At her destressed cry I raced over and picked her up, her tremblingly little body clinging to me, her wide eyes constantly darting to the window. It had been a long time since she had had such a bad anxiety attack. After a couple of hours she settled back down and starting playing with her toys again as if nothing had happened. I, on the other hand, felt too exhausted to to even contemplate the rest of my to do list.


At 10pm, Elizabeth woke up with that heart breaking cry of hers. I quickly picked her up, but she wriggled out of my arms and started pushing me towards the bed, her eyes once again darting to the window. But once on the bed she just cried more. I tried to take her into her playroom to distract her but her anxiety escalated as the playroom had one huge, bare window to allow the maximum amount of sunlight in during the day. Great, she now had a fear of windows. Taking her downstairs she began to settle, but still wary of the window as if a someone was about to lunge through it and snatch her. My father came over about 11pm to see if he could settle her. It was well after midnight before we finally got her back to sleep. A few hours later, just after 4am, she woke up and jumped out of bed ready to start the day. Feeling like I barely slept a wink I finally dragged myself out of bed and took her downstairs for a warm drink of milk, turning on the cartoons and opening the blinds. She glanced at the window a little warily before getting down to play with her toys. It is now going onto 8am and her fears seem to have been forgotten.

Climbing Obsession

I often wonder why I achieve very little in the way of writing some days, and then I sit down and reflect on my week and wonder how I managed to achieve anything at all. This week is one of those weeks. As per usual, it is the middle of the night once again as I write this. My daughter woke up at 01:30am this time. Feeling a little nausea from lack of sleep I took her downstairs, made her a warm drink, rubbed baby balsam on her chest (the lavender can be quite soothing) and put on the Night Garden with the volume turned low. I then made myself a cup of tea, sat down and just stared at the pages of a book I’m currently reading. This week Elizabeth has seriously had the climbing bug. Whether I’m doing the dishes, or trying to catch up on email, every two minutes I’m pulling Elizabeth off the bookcase or tv unit. So whilst a task would usually take ten minutes to complete, it has been taking thirty. I was at a complete loss on how to deal with this behaviour. When I firmly say no, two minutes later she is at it again and, Elizabeth simple would not grasp the concept of behavioural modifications such as time out. Yesterday my exhaustion went up a notch when from mid morning until late afternoon all she wanted me to do was nurse her, her cries becoming more stressful when I had to put her down to go to the bathroom. Tears streaming down her face I eventually packed her up in the car and took her to my parents. She immediately cheered up and happily bounced on the trampoline for the next half hour. My father of course denied that she had been putting it on the whole time. He calls her his little angel and according to him she can do no wrong. Once home, Elizabeth began her training for the K2 summit once again. I had had enough. Taking everything off the bookcase in the lounge room I moved it into the garage, replacing it with two smaller bookcases that came level with my daughters eyes and thus had no climbing appeal whatsoever. I then moved the tv unit into the far corner away from the wrought iron candle holder that hangs on the wall and everything else within reach of her fingers, re-arranging the two lounge chairs to suit. So far it has been a success and for once I’ve been able to sit down and finish a cup of tea in one go. I mean, so what if the beautiful timber bookcase that has been regulated into the garage was replaced with two chipboard creations, the white laminate standing out glaringly from the rest of the furniture, at least now I’ve got a little of my sanity back. Now, if only I can get her to sleep.

The Butterfly

One of my daughters' favourite past-times is exploring the complex in which we live. Her favourite haunts being the pool and a little alcove, filled with pebbles and ringed with large stones, nestled between two houses. Every other afternoon my Father pops over and calls for Elizabeth through the screen door. Her face lights up and she immediately stops whatever she was doing and takes my hand to help her open the door for her Pa. Putting on her shoes I watch my daughter run after her Grandfather down the road, like two truants looking for what they can get up to next. Suddenly she stops and bends over to scope up something up off the road. Thinking the worse I come over and investigate. Cradled gently in her hand is a beautiful, little butterfly. It alights there for moment before fluttering off.

First day of Autumn

It is another three am wakening and I'm glad for the dampening effect of the heavy rain outside as my daughter runs around the house squealing. I actually don’t mind these early mornings as it gives me guilt free time to read or write for, as far as I’m concerned, the clock doesn’t start until six am. I also love sitting at my desk at this time of night, watching the first blush of morning creep across the sky through the window, that delicious crispness of foredawn, and that earthy new day smell that is hard to describe but which is so full of promise. Occasionally my daughter wanders up to me, patting my leg as she curiously looks up at the computer screen. I pick her up giving her an enormous bear hug, breathing in the earthy notes of the avocado and calendula conditioner I liberally apply to her beautiful long hair each night. After a while she squirms out of my arms and goes back to her toys, which she has managed to spread throughout the entire lounge room. A frog croaks loudly in the drain pipe just outside my window soon joined by a cacophony of calls and whistles of birds as the sun struggles to break through the thick rains clouds. I glance at the clock and realise that it is the first day of autumn. What a wonderful way to welcome the dawn of a new season.

Another 3am start

It’s three am in the morning and my daughter has decided that she has slept enough for the night. She runs around upstairs squealing at the top of her lungs, every now and again collasping in fits of giggles. I try to hush her and bring her back to bed but she is too excitable. She wakes up like this at least once a week, and usually on the morning before I go back to work so I’m always bleary eyed by ten pm Sunday night as I’m stamping passports. Resigned to the fact that I’m not going to get anymore sleep I take her downstairs worried that she is going to wake the neighbours. Making her a warm drink of milk I settle her down on the couch and put on an old Baby Einstein video hoping to settle her. If anything it made her more excited. I look at the video cover, Baby Neptune. She just loves water. Oh well. Making myself a cup of tea I use this opportunity to do some guilt free writing. My mind wonders to the teenage boy and single dad who live across the road from me. The boy has Asperger’s and often I hear him talking excitedly to his dad into the wee hours of the morning. I feel comforted by this, knowing I’m not the only parent awake with their autistic child at this time of night. One of my friend’s son was prescribed heart medication to get him to sleep at all. For a while they gave up and just made sure everything was locked up securely until one night they woke to him warming up a can of baked beans in the microwave. He was only three. Other parents were horrified to hear this. My response was, “Gee, he must be bright to be able to use the mircrowave.” It is now four am and Elizabeth’s momentum has slowed a little. I wonder if I should try to get her back to bed. My gaze strays to a short story I’ve been writing and I shrug my shoulders, she could always collapse on the couch if she gets too tired.

Joy!

This morning for a change I woke up before my daughter. As it was still so early I laid quietly beside her and just watched her little face. She seemed so at peace. As the minutes ticked by a sweet smile tugged at her lips. I would have loved to know what she was dreaming about. All too soon she began to stir. Opening her beautiful blue eyes, she spied me lying beside her. With a yell of delight she jumped up and then snuggled into me giggling before scampering off the bed to play with her toys. I imagined what life would be like if I woke up bursting with such joy each morning. To be a child again ...

Back to school

My daughter, Elizabeth, returned back to school today. Although she only attends Kindy once a week, I still looked toward this day with a deep sense of apprehension. I was especially worried about the composition of her classroom. Last year she was blessed to be in a class with four other little girls. Would she be so lucky this year? Some of the boys at the school are quite loud and boisterous and I did not know how would she cope with their outbursts and tantrums. Although Elizabeth is a tomboy in many ways, she is still a very gentle child.

Last night I packed her lunch, laid out a set of clothes, as well as a second set for her bag, washed her hair and trimmed her nails. This morning after an extra big breakfast we were off to school, picking up Nan on the way. When we arrived I was happy to find out that she was in the same classroom as last year with the same Teacher. But the Teacher’s Aide was new and, to my great shock, she was in a classroom of all boys. I thought perhaps that there would be one or two boys in her class, but to be the only girl? I was very disappointed and knew straight away that I did not want Elizabeth in this class. Elizabeth needed social role models and boys are not social at the best of times. None of them even looked Elizabeth’s way. Elizabeth seemed very happy when I left her but there was no way she was going to remain in a classroom of boys for the entire year.

As soon as I got home I rang the head of the EDCP, Bronwyn, to discuss my concerns. She thought Elizabeth would do well in that class as they were at all the same level and they would work on the tasks together, unlike last year where she thought that the other girls babied Elizabeth. Elizabeth really came ahead last year because she was with a group of older girls who proved to be excellent role models. In the end, she agreed to move Elizabeth to another classroom that had a few girls. I certainly don’t want to be one of those nuisance Mum’s but I know what is best for my daughter and I am glad I stood my ground on this issue. Perhaps, if there was one other girl in the class I would have been more contented to let things be. Now, I just have to contact work to see if I can change my roster …

Kicking Up

I just love this photo. After an adventurous day at the beach, Elizabeth kicks up in front of the telly.

Budding Writer

Three years of age, Elizabeth just loves looking through Mum's books. Perhaps another budding writer?

Therapists

It has been four weeks since my daughter’s therapy finished for ‘09’ and Elizabeth seems to be becoming ahead in leaps in bounds. She is much more relaxed and happy and is making much more eye contact which makes me want to completely reassess her therapy program for this year. Last year was quite disappointing. William Stillman once quoted that Autism is a billion dollar industry. I can see his point. At the end of last year I did six weeks of intensive Speech and Occupational Therapy at $300 an hour. Not one thing was achieved in these six weeks. A non-verbal child the therapists had no idea how to hold Elizabeth’s interest and quickly became jaded. They tried to cover this by suggesting Elizabeth should be tested for Rett's, which is ridiculous considering how physically able she is.

My friend said to me that her little boys Speech Therapist was so boring that he used to fall asleep during the sessions. This has become a reoccurring theme with my daughter’s therapists over the last two years (and there has been many). While they are all genuinely enthusiastic at the beginning, none of them seem to know how to interact with an autistic child and the table tasks they set soon become monotonous and boring. There has even been sessions when Mum and I have stepped in whilst the therapists have sat in the background and done nothing and yet still charged us! In fact, Elizabeth got the most benefit out of the services that were actually free, for example the therapists at the Children’s Therapy Ward (Government funded) at the local hospital who got Elizabeth over her anxiety of small rooms, and I can’t say enough good things about the Special School she attends (again Government funded).

This year I’m determined not to repeat the very expensive mistakes of the previous two years. I’ve sat down and wrote a list of things that I want Elizabeth to achieve this year. The top of this list is a system of communication. Turning four in April Elizabeth is increasingly becoming frustrated that she can’t communicate her wants and needs to us. We’ve given up on the idea of Makaton as Elizabeth still doesn’t point and wave (despite our gentle guidance), so I can’t imagine we would get much success out of signing. We have had a little success out of picture exchange but the implementation of this has been higgly piggly as the Speech Therapists kept changing the rules to suit their mood. So this year I’m recruiting a PECS consultant to help with the task and bypassing the Speech Therapists altogether.

The other skills I want Elizabeth to achieve are basic life skills such as toileting, using a spoon and dressing. In the past I’ve employed an Occupational Therapist to help with these tasks, but that just made the situation more stressful. I’ve found that Elizabeth responds far better to gentle coaxing by her Grandparents and I and she is quite happy to sit on the toilet and go when we take her hand. The biggest challenge is to get her to communicate to us that she needs to go and that is when PECS steps in.

Overall, I want this year to be a lot less stressful and concentrate more on having fun with my daughter. I’m also determined to take one day a week out for myself when Elizabeth attends Kindy to just chill out by going to the movies, reading, writing or catching up with friends over a coffee. I guess you could call these are my New Year’s resolutions.