Blessings

It is the time of year when we sit back and reflect on all the things we are thankful for. Whilst I often feel frustrated and discouraged about life in general there are many things I'm thankful for as well, including good health. Below are some of the things that top my list.

First of all I’m thankful for my daughter for choosing me to be her Mum. Despite all the challenges I feel blessed to be raising a child with autism and the unique perspective it is giving me of the world, after-all only six children in a thousand have autism so how lucky was I. She has made me into a better person who is not so quick to judge others, who has found that material possessions well, are not so material after-all, and who has introduced me to many, many wonderful, incredible, inspirational people I would not have meet ordinarily. I am thankful for this cheeky, quirky little girl who makes me laugh out loud at least twenty times a day. I am thankful for this little girl for giving me something to look forward to when I come home from work at night. I am thankful for this little girl for instilling in me the true meaning of Christmas, who doesn’t care for presents and instead finds delight in all the beautiful lights and just being with her Mum, Nan and Grandpa.

I’m also thankful for my parents who have looked after my daughter since she was three months old so I, a single Mum, could go back to work to keep a roof over our heads. I’m thankful for the love they have for my daughter and the effort and time they have put in. To all the trips to the beach, park and library so that my daughter may have many wonderful memories as she drifts off to sleep at night. I’m thankful for my Dad, who despite having arthritis at a young age of 56, still piggy backs my seventeen kilogram daughter everywhere and who, despite my grumbling, has races with my daughter up the escalators at the local shopping centre until they are told off by the security guards. I’m especially thankful for my Mum who was there when the Paediatrician dropped the bombshell of autism and has been to every single therapy session and medical appointment since. By mostly I’m thankful to my parents for accepting my daughter for who she is and for never criticising or reproaching her.

Lastly, I’m thankful that I work for a Federal Government that recognised my rights as a Mother of a special needs child and accommodated me in everyway they could so I could spend as much time as possible with my daughter.

Have a Merry Christmas!

Living a life of mediocrity

 At the moment I’m reading ‘Empowered Autism Parenting’ by William Stillman. It is a very uplifting book and reinforces my own convictions about my daughter and her unique place in the world. I’ve read so many disheartening books on Autism of late that it was quite enlightening to read a positive one for a change (one book ‘Challenged Parents, Challenged Kids’ still makes me cringe). Stillman offers hope and real-world information for parents of children with autism, dispelling the myths about high-cost therapies and medications.

One thing that has been troubling me of late, which Stillman brought up, is the conviction of many therapists to discourage ‘obsessions’ or what I would refer to as special interests in autistic children and young adults. According to a therapy I started a couple of months ago (based on building relationships), obsessions/interests are seen as obstacles to remediation as they often block the child’s availability to consider something new or to seek out experiences with people in their world. According to the advocates of this therapy, without remediation the child would otherwise lead a life of marginalisation and failure. Some parents have gone as far as pulling their autistic child out of computer science classes, probably the only place that child feels he truly fits in. This has some merit as no parent wants their child glued to the computer screen to the exception of all else, including developing healthy peer relationships. But how far do we go?

Temple Grandin has often written about this topic. Whilst the therapy above talks about focusing on the child’s weaknesses, Grandin speaks about the need to build on a child's strengths. With high unemployment for ASD adults there is a need to ensure that we don't snuff out any possibility they may have a marketable skill, she writes. Grandin herself is a prime example of this. Similarly, Stillman writes, “when we value passions instead of labelling them obsessions (unless they seriously impair a person’s quality of life), we are better poised to envision a creative blueprint of possibilities for the future … these may include higher education or self-employment opportunities.”

Behind every successful sportsperson or artist was a childhood 'obsession' or passion. Professional footballers didn’t suddenly become great sportsmen at the age of eighteen. No, they probably ate, slept and breathed football throughout their entire childhoods to become the success they are today. How many well-known writers you know who talk about childhoods scribbling away by torchlight at night when the rest of the household had long gone to bed. Imagine if Hemingway, Kipling, Dickens or Austen were discouraged from writing as young adults. So why should Autistics be discouraged from their special interests to live a life of mediocrity? Stillman writes that we all engage in activities which allow us to experience satisfaction or pride, they are called hobbies. “But wait”, he writes, “how come you can have a hobby, but I, as someone with Asperger’s, must have an obsession?” and seen as a “maladaptive behaviour and abnormal fixation that needs to be extinguished.” Please note, that Stillman and Grandin distinguish between passions and interests and those obsessions that may be self-harming.

My daughter just loves the water, so we often take her to the beach and pool and even to the pet shop so she can watch the fish in the massive aquariums they have. I even have an aquarium DVD and books on marine life (a fish tank is on its way). Should I be discouraging this interest? My gut instinct says no. The whole family enjoy these outings and we are making many wonderful memories sharing these experiences with her. And you never know, maybe she will grow up to be a marine biologist or ecologist.

Wasting my money

These last few days I have been sitting down and devising a therapy plan for Elizabeth for next year. This year was rather disappointing. We had three different Speech Therapists and each one started off rearing to go but by the sixth week, when there was no obvious results, started getting the look of dejection about them. When the third therapist said, “we just don’t want to waste your money” I put my foot down and explained that I was not wasting my money, that Elizabeth has indeed improved significantly over the last year. A year and a half ago I could not get her into the room, I’m sure her screams could be heard from blocks away. Now she will sit happily at the table doing hand over hand for half an hour or more. And whilst she still does not use words she is much more vocal now and has a much higher comprehension level. I explained that I did not expect results instantly, this was after-all a marathon not a sprint. Autism is not something that can be fixed or cured like stuttering, despite what certain therapists want you to believe.

In the last couple of months the Speech and Occupational therapist have worked together with Elizabeth. Whilst this approach may seem good on the face of it, two therapists together after-all must be better then one, the sessions ended up evolving into a higgly piggly affair with nothing much being achieved. Next year we will be attending separate Speech and Occupational Therapy sessions with clear attainable goals set by me. I do not wish to ‘cure’ my daughter. Her autism is who she is. But I also want her to achieve her full potential.

Rett's Syndrome

My daughter's Paediatrician rang this afternoon to speak about concerns raised by the Senior Therapist at the clinic Elizabeth attends. They both wish for Elizabeth to be tested for Rett's Syndrome, a complex neurobiological disorder of development in which an infant seems to grow and develop normally at first, but then stops developing and even loses skills and abilities with onset motor deterioration occurring later in life. The symptoms of Rett's Syndrome are very similar to classic Autism. I immediately got onto the internet and started researching the Syndrome as the test is very expensive and I wanted to make sure before I dolled out yet more money. Yes, Elizabeth does have many of the symptoms such as loss of speech, anxiety and social-behavioral problems, and feeding difficulties (but these are common with Autistic children as well). But the most common symptom she definitely does not have is loss of motor co-ordination and movement. Elizabeth is very active with excellent gross motor skills, she's a veritable gymnast when it comes to the trampoline and she can easily race me up the stairs (its fine motor skills that are the problem). Tomorrow, I will be sitting down and having a deep discussion with her therapists before I go prodding Elizabeth with any more needles.

No improvement

Today at Elizabeth’s Speech and Occupational Therapy appointment the Senior Therapist at the centre was asked to sit in as they were at a lost of how to continue with Elizabeth. At first I thought because they were both young they were just seeking the opinion of a more experienced therapist. That is until the Senior Therapist asked whether she could speak with me in another room. She had the last two years of therapy reports on her lap and asked whether I had seen any progress in Elizabeth. I immediately spoke about how much Elizabeth’s level of anxiety had improved. When before she would just cry and cry if you tried to take her into the room she would now sit quite happily at the desk with the therapist for half an hour. But that is not what the therapist had in mind. She was deeply concerned that in the last year and a half Elizabeth had made no progress both in communication and the table tasks she gets set. I was a little floored by this. She wanted permission to speak to Elizabeth’s Paediatrician to discuss what chromosomal tests had been conducted as she had a niggling suspicion that Elizabeth’s disabilities went beyond her autism. Despite all her challenges my daughter is a beautiful, happy little girl and I will never give up hope. But boy, life just keeps throwing punches.

Another trip to the hospital

This week was highlighted in red bold on my calender, it is the week that Elizabeth was to start a more intensive therapy program with her Speech and Occupational therapist and the first official appointment with the RDI (relationship development intervention) Consultant to begin a highly anticipated new therapy program. It was to be a busy but exciting week. It was not to be however. Over the last week Elizabeth had been on strong antibiotics for a re-occurring ear infection. She seemed to be recovering well, however, on the fifth day of the course she began refusing all food and by early that afternoon she also began vomiting up her milk. All I could get into her was little sips of water. The next morning she arose at 5am but was still very lethargic and just laid on the sofa as I made her a warm drink of milk. She sculled the milk down having not eaten the previous day, but immediately threw it up again. Very concerned by this stage I packed a bag, called Mum, and arrived at the hospital emergency ward by 6am. It was completely empty! A triage nurse saw us and took us straight into a room where a lovely Indian Doctor saw us within twenty minutes. We were told to immediately discontinue the antibiotics as they were making her ill and giving her gastro symptoms. Her fluid intact was monitored and blood tests were taken. One time Elizabeth jerked her arm pulling the needle out, spraying blood onto the sheets and onto me. It is a very strange thing indeed to have your child's blood all over your hands. Elizabeth took all this in quite patiently. She was actually a star patient. The only time she whimpered was when the urine bag was taken off her (I've mentioned these horrid things before). But this was also testament to how sick she was.

At 1030 that morning we were meant to show up to the appointment with the Speech and Occupational Therapist to begin the new therapy program. If you cancel within 24 hours you are I was liable for the whole $300. Expressing my concerns, the nurse offered to call the agency to explain Elizabeth's situation and the Doctor wrote out a certificate to cover all bases. By 11am we were back home with a handful of Hydralyte ice blocks, which we were to give her every half hour. Once home she threw up a few more occasions and just laid on the lounge, falling asleep everything now and then. That night she fell asleep with a couple of mouthfuls of rice custard in her belly. At 1am she woke and jumped off the bed, the most energy she had exhibited in three days. I took her downstairs where she downed a cup of milk without throwing it back up. I managed to get her back to sleep by 2am but she was up and rearing to go by 5am. Bleary eyed I raced around the house cleaning up for the arrival of the RDI consultant at 930am. This appointment, at least, went quite well, although I did forget to put the biscuits out. Shortly after the consultant left, Elizabeth had another bout of gastro where her grandparents and I took turns carrying her with her knees tucked into her chest for about three or fours hours.

That was only three hours ago. Elizabeth is now sitting quietly, her belly full of lamb casserole contentedly watching her favourite movie Babe, Euky Bear rubbed on her chest to help ease a stuffed nose from a cold she seemed to have developed straight after her bout of gastro. Despite the runny nose she now appears happy and almost back to her old self. I just hope things next week go a tad more smoothly.

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I was putting yet another TV Dinner in the microwave when I heard the little boy next door talking animatedly to his Mother. He was born the same week as my daughter who was yet to utter a single word. Trying out a new video camera this afternoon I filmed her sitting quietly reading her books. One of her books had picture keys that made sounds when pressed. She kept pressing the same key over and over, absolutely absorbed in what she was doing. I called her name to get her to look up at the camera. After the sixth time she looked up briefly before going back to the book. On the toilet doors at work there are posters on depression. One that gets to me is the elderly lady who doesn't want to be a burden on her family. On another, is how depression is often misdiagnosed as stress. Tonight I discovered that you can finish a bag of twenty Fredos in one episode of Neighbours and Two and Half Men.

Costs of therapy

I found myself today, pen poised over a contract, with that uneasy, churning feeling in the pit of my stomach. I was about to embark on a new therapy program with my daughter Elizabeth, based on Dr Gutstein’s theory of dynamic intelligence called Relationship Development Intervention. A month ago when I tracked down a Consultant who was willing to work with us I was bubbling with enthusiasm. But now, as I read through all the paperwork and work out the financial cost (about $6000 per annum) I can’t help wonder whether I am doing the right thing. I have funding under the Helping Children with Autism Package for the first $6000, but after that it’ll be coming out of my own pocket, a cost of up to $25 000 over five years on top of her regular Speech and Occupational Therapy appointments. However, this is just a drop in the ocean in comparison to ABA which costs up to $45 000 per year.

Last night the local Kindy and Crèche rang to say that Elizabeth had been accepted into their two-day program next year. It had always been the intention that Elizabeth was to split these two days between the Special School and the Kindy so as to get the benefit of integrating into a mainstream setting whilst continuing with her therapy program at the Special School. The Kindy was all for this. However, as I found out last night, I was still up for the full attendance costs. I asked to have the weekend to think over it. Inside I was seething. Again I will be hit in the pocket. Let’s just say, she will not be attending the Kindy and Crèche next year.

At the beginning of the year a Speech Therapist attended my home for two hours every Thursday for six weeks. The total cost: $2500. That’s $200 an hour. At the moment Elizabeth is seeing a private therapist at $140 an hour. I would like to point out that I am a single, working Mother who receives zilch child support. But at least I am working. I could not imagine trying to survive on the pension with the never-ending costs of raising a special needs child. Just with rent and therapy, there’ll be nothing left over to eat, let alone affording everyday necessities such as running a car (and yes, when you have a child with disabilities a car is a necessity).

Yesterday I kept my friend company whilst she got her hair cut, dyed and straightened. The hairdressers were packed with other women getting similarly pampered. However, I did not feel jealous or resentful (I’ve left my own locks grow out natural and long to save money). I had just purchased some books for my daughter and thought the money better spent. Actually, the idea of spending three hours in a hair salon makes me itch with nervousness. This made me think to where I’ve come to in my life. Although I feel resentful at the high costs of my daughter’s therapy, I think I’ve grown more down-to-earth and appreciative of the simple things in life. My daughter has certainly taught me that as she delights in the feel of the wind caressing her face as she sways back and forth at this moment on the swing in the backyard. And yes, I miss travelling to Italy and buying expensive clothes, but I think I’m becoming a better person because of it.

Diagnoses

Despite the progress my daughter has made, let alone the countless appointments with therapists, I learned last Friday that Elizabeth is classed as being on the severe end of the spectrum and that she would mostly likely being attending the Special School full-time when she begins Prep (and here was me tossing up between two local Catholic Schools a few months ago). When I look at my daughter I don’t see a severely disabled child. I see a happy little girl that perhaps views the world a little differently from others. But this diagnoses, which can change again in six months time, made me sit back and really observe my daughter as an outsider would. When strangers bend down to greet her, Elizabeth usually turns away as if nobody is there. And when she does deign to greet someone it is usually with a little hand flap and excited squeal. Her play is limited to banging blocks together and jumping on the bed, although she does love being outside with the wind in her face. Her motor skills are such that she can’t ride a bike or use a spoon, nor dress herself (although she does really try). I also tend to avoid mainstream playgroups as the children can be quite cruel, and the parents, well what can I say about them? Just this afternoon a young neighbour made an innocent comment on how weird Elizabeth was, which really reminded me off some of the stories in ‘Chicken Soup For the Soul: Children with Special Needs’. I must have read this book at least five times and I cry every-time. It should be compulsory reading in all secondary schools. I patiently explained to the boy that Elizabeth has autism and that he should perhaps ask his teacher about it the next day. After this, as I was cutting out flashcards to be laminated I started crying, the first time in many months. But the tears quickly dried up and I got on with it, for what else can I do?

Being my daughters advocate

Yesterday I attended a MyTime playgroup at my daughters’ school. It is a government-sponsored playgroup for parents of children with special needs. A morning tea is provided for the parents (to be politically correct, although it is usually just mothers that turn up) whilst the kids are herded off to the playground. Each fortnight a new presenter takes the floor to discuss issues such as toilet training, first aid or nutrition. This week we had a Speech Therapist go through Makaton, a simplified form of Auslan (signing) for children with special needs. But it is the time before and after, just chatting with the other Mothers that I find the most enjoyable. Sometimes when you have an autistic child you can feel very isolated, especially being a single mum.

I remember when Elizabeth was first diagnosed the play date invitations and chats over coffee suddenly drying up, although she was still same little girl as before the diagnoses (I understand why many parents don’t wish to have their child labelled). Similarly, last week her cousin had a birthday party with a reptile farm and all, something Elizabeth would have loved. However, I never knew about the party until after the event. This shunning of my daughter hurts bitterly, especially since Elizabeth is a happy, beautiful, gentle child who loves being around other little children.

Today at the Playgroup one of the minders didn’t show which meant one lady was in charge of group of six children, varying from eighteen months of age to five years, Elizabeth being the only special needs child amongst them. I had my reservations, as Elizabeth is a climber and has absolutely no fear. But she assured me that she had an autistic child herself who was very much like Elizabeth at her age. Two hours later she brought Elizabeth into the room, both knees and her face badly grazed. She was pale and shaky and as I picked her up she gave me that look of abandonment (if you’re a mother, you know exactly what a mean). The minder didn’t appear concerned and she was soon busily herding the other children into the playroom. I felt physically ill seeing Elizabeth in this state. Someone was always there to pick her up and give her a reassuring hug when she fell. Because Elizabeth cannot communicate verbally, I am always in a state of anxiety when she is left with strangers. If she had cried out for her Mummy, would she have be consoled and offered hugs?

I left the playgroup then, making excuses that Elizabeth was tired and I needed to get her home. Once home, Elizabeth flinched and cried as I applied Savlon to the cuts. The graze on her face started at her hairline and ended at the tip of her nose. I placed bandaids on her knees and checked the palms of her hands for any more grazes. Of course she recovered quickly, but later this afternoon when she had a minor mishap she put her arms out for me and cried and cried before falling asleep from exhaustion.

I do not blame the minder, there were far too many children to keep an eye on in such a large playground. But it reminds me of my role of being an advocate for my daughter, a role I may have into her adult years. This is why I appreciate the efforts of people such as Elizabeth’s teacher’s aide, Lydia. A loving, generous woman, Elizabeth feels completely secure under her gentle, guiding hands. So much so, that the once clingy, anxious child from three months ago now runs to her classroom every Friday morning and barely acknowledges her Mother as she kisses her goodbye. So whilst I sometimes feel defeated by the challenges my daughter faces, I know that there are many wonderful people in my life as well ready to pull me back onto my feet.

Therapy Update

It has been five, very busy, weeks now since my daughter started Kindy at the special school. She seems to be settling in well despite the teacher being sick one week and the teacher's aide the next. While she is still reluctant to participate fully during arts and crafts time, she has a ball in the playground, having it over the older and bigger kids when it comes to the climbing gym, and she seems to genuinely enjoy circle time. Each week I've dashed off to the local shopping center to enjoy a coffee before retiring the rest of the time to the parents room to write and catch up on assignments. I find by doing something purely selfish for a couple of hours on a Friday seems to recharge me for the rest of the week.

From the parents room I can clearly see Elizabeth's classroom. Last week I watched amused as Kieran and Lydia lead the students towards the Hall where they were to enjoy a puppet show. At first Elizabeth was holding Lydia's hand, but soon enough she was putting her arms up to be picked up. She seems to be completely comfortable with Kieran and Lydia and won't hesitate to crawl into their arms for a cuddle. She especially seems to like cuddling into Kieran, but then he is a good looking man and who wouldn't.

On the home front, for the last four weeks I've had a speech pathologist attend my home for a couple of hours each Thursday. These sessions have been wonderful as she has been able to observe Elizabeth in her home environment. As the result of these sessions I now have introduced activity boards into Elizabeth's routines, that is, photos of activities or events placed on a board in the order that they will be undertaken during the day. For example, breakfast, dressing, packing lunch, car, and school. Of course, these activities can get broken down even further, for example, putting on pants, socks, shirt then shoes. These boards are meant to help Elizabeth process what she will be doing and hopefully allay any little anxieties she may have.

I've also re-introduced communication books. These are little photos albums showing Elizabeth going down the slide at the park, or reading a book at the library or being piggy-backed around the complex by Grandpa to help prompt memory recall, something autistic kids struggle with. We've also re-introduced PECS (picture exchange and communication system). If she wants a DVD on she needs to hand me a picture card of the DVD, and the same if she wants to go outside or wants a snack. All these strategies are aimed at helping Elizabeth to communicate by non-verbal means and alleviate the frustrations of not being able to express herself verbally.

This week I’m having an Occupational Therapist drop in for a few hours to help Elizabeth with her sensory issues and her feeding. Age three and she is still gagging on a lot of foods and still has no interest in spoon-feeding herself. It is at these times that you get reminded about how far we are yet to go with Elizabeth’s therapy.

On another note I've found out recently that my Grandparents regularly read this blog (hi guys!) so I'll make sure to add some extra photos of Elizabeth when I can. The above photo is of Elizabeth and her Grandpa enjoying her new favourite pastime: bike riding.

First day of kindy

When the Special School first told me that my daughter would be starting Kindy in the second term I began dreaming about all the things I would do with my spare time, but as we got closer and closer to the big day I started feeling quite anxious. Will anyone be there to assist her with lunch? Would they understand her quirky little ways of communicating? Would they be kind to her? When she had one of her anxiety attacks who would be there to comfort her?

When her first day of kindy finally came around, I packed a carefully labelled lunch into her new backpack, made sure she had plenty of spare cloths and her drink bottle was filled to the brim. The previous night I washed her hair and trimmed her nails, and laid out a freshly ironed outfit for the big day. I have found over the years that when I am anxious about something I get to organising. That morning, with her hair in two plaits set with a little poka dot clip we got into the car and headed off to the Special School.

When I arrived at the class room the first thing I noticed was that the other little girls were much bigger then Elizabeth. One was even sitting at the computer playing a game. I soon found out that Elizabeth had been placed with a group of four year olds as the Head thought, as the girls were much more settled into school life, they would act as role models for Elizabeth. I saw straight away the wisdom in this decision as the classroom had an aura of orderliness to it that Elizabeth thrives on. Elizabeth’s teacher, Kieran, came up then and introduced himself. He was very young, just out of university, and incredibly good-looking (a rarity amongst male teachers). He showed me where to place her wash things, drink and lunch box. Whilst Elizabeth still refused to look at him at this stage, he had a gentle nature about him and I knew, given time, she would warm up to him.

But all this meant nothing to the tearful little toddler that was clinging to me. Since we arrived her crying was slowly getting more and more distressing. The teacher’s aide, Lydia, took her into the storeroom to pick out some toys to get her settled in, but she was not interested in anything other then her Mum. Kieran then put on some music, which seemed to settle her. When an 80’s classic came on she wriggled out of my arms and started dancing. Kieran repeated the song and she rewarded him by skipping up to him and giving him a beautiful smile and a shake of her hands, which I’ve come to know, is her way of greeting people. After this I quietly removed myself to the back of the classroom, letting Lydia take over as they settled down for circle time.

Elizabeth sat quite comfortably on Lydia’s lap as they say some songs and even watched Kieran with interest as he read them ‘Old MacDonald’. After this it was painting time, something Elizabeth absolutely detests and I was ready to see a tantrum unfold. Elizabeth allowed Lydia put on her apron then she sat quite happily at the table with the other girls waiting her turn with the painting. When it came her turn she didn’t pull away but stuck her fingers into the sticky paint and had fun making great splotches on the paper. This was her first piece of art that she created herself with no prompting from therapists or teachers. I have since framed it and placed it pride and place on the lounge room wall.

Seeing her quite happy and content I withdrew to the Parents Room where I would not be far if she got too anxious. For the next three hours I whiled away the time reading, enjoying the time to myself and yet knowing Elizabeth was only two rooms away. Once Barbara, the physiotherapist, popped in to say that Elizabeth was having a great time in the playground with the other children and that she looked very happy. With this reassurance I nestled back down to enjoy my book.

At one o’clock, anxious to see how she was going I popped back into the classroom. She was quite happily sitting at the computer whilst Lydia got the table ready for lunch. Once she saw me she came over and planted a large kiss on my lips then let Lydia lead her to the table where she sat with the other girls who were enjoying their lunch. She seemed completely relaxed in her surrounds. After lunch she did some more painting, then they all went next door for music and dancing with a group of little boys. Elizabeth had a ball and continued dancing long after the music stopped. She did not seem intimidated by the close proximity of the other children at all.

Then it was time for circle time and to say goodbye. Whilst the other little girls sat on their chairs Elizabeth was placed in a snuggle chair, that is a chair that wraps around on either side of her shoulders so she feels like she is getting a nice big hug. It was first suggested by her Occupational Therapist and works wonders for keeping her still and calm, plus it also frees up the Teacher’s Aide. Within five minutes of getting into the car Elizabeth fell asleep and slept for the next two hours.

I am now looking forward to next week and whilst I won’t be going no further then the Parents room, I plan to use those five hours to write and catch up on assignments secure in the knowledge that my daughter is having a great time. When Elizabeth was first born I would never have imagined that she would be attending a Special School a couple of years later. But I now send my daughter their with pride. With classrooms of no more then six children, excellent facilities and wonderful, supportive staff I know that I am giving her the best chance to grow up to be a happy, confident child. And really, that is all any parent can ask for.

My daughters birthday

It is another wonderfully drizzly Easter morning. My daughter is snuggled on the couch watching the Night Garden while I sit at my desk, cradling a cup of tea in my hands. I have opened the window wide, letting in the crisp morning air. I love these autumn mornings with the first delicious hint of winter in the air.

Yesterday I had all the relatives over for my daughter’s third birthday, so I got up early and set to baking cup cakes and decorating the table in a tea party theme. I even purchased little iced fairies for the cake. Well the first diaster for the day was when the icing for the cup cakes turned into a watery mess, despite following the instructions to the word. My nieces ended up dipping the cupcakes into the icing like fondue, leaving trails of pink icing across the tablecloth and very sticky fingers. My daughter, who has no interest in sweets, was content to nibble on her organic oat biscuits. I was appeased a bit when the girls announced that it was absolutely delicious.

After lunch it was time to sing Happy Birthday and cut the cake. Well Elizabeth would have none of that. She refused it sit in front of the cake for the obligatory happy snap and even placed her hands over her ears when we tempted to sing Happy Birthday. When she was reduced to almost to the point of tears I gave up. She then ran back into the lounge room quite happily and started clapping her hands: Elizabeth 1064, Mum 0. After this, we went into the backyard where I set up the bubble machine. At last, success. The girls laughed and squealed as they chased hundreds of bubbles over the backyard. It reminded me of one of the scenes from a Fairyopolis book: it was quite enchanting.

On the verge of a sugar overdose, I waved goodbye to everyone and collapsed on the lounge. Not willing to fight over the television, I let Elizabeth watch one of her own Dvd’s. It was at this stage that the people in the Townhouse adjoining mine turned on their music. There is nothing more annoying then that constant whump, whump through the walls when you are nursing a headache. On the verge of throwing a chair against the wall the music was turned off and I slowly felt the tension of the day draining out of me.

As I watched my daughter happily pottering around the house I realised that a year after her diagnoses I still find myself willing things to be normal. To have a child that will indulge her Mother and smile sweetly for the camera, and who does normal, fun kids things liking dipping cupcakes into icing and licking the sticky mess of her fingers. I know I must lower these expectations and be thankful for what I have: a happy, healthy child who finds pleasure in a soft, summer shower, or the wind blowing in her face, or the feel of sand beneath her bare feet. A child who is more interested in the sights and sounds of the shopping centre then that plastic toy they place within easy reach of little fingers at the checkout. A child who grins at you cheekily as she is about to climb onto the kitchen bench and then gives you an enormous hug when you ‘rescue’ her again for the tenth time. But I’m still a Mother and sometimes it is hard to let go of those images of a perfect, happy little family you build in your head while pregnant. But, ever so slowly, I’m getting there.

Fun!

After cancelling last week’s speech therapy appointment due to illness, I was a little apprehensive about today’s session as Elizabeth was still quite grisly, which usually translated into teary tantrums. But I need not have worried. Kate, her Speech Therapist, along with Natalie, her Occupational Therapist, had set the room up with all sorts of interesting toys to try to get Elizabeth to engage with them more. And as Elizabeth is very adept at unlocking doors (she is not quite three), they set up a clam filled with balls right in front of the door. This worked perfectly as Elizabeth not once tried to escape; she had too much fun playing amongst the balls.

Through trial and error we have moved away from PECS (picture exchange) and have decided to concentrate more on Makaton (signing) and vocalization ques. Today the goal was to get Elizabeth to ask for ‘more’ through signing. Whilst she loved the bubbles, today it was music time that proved the most successful. Kate would play a favourite song of Elizabeth’s for about thirty seconds before switching it off. Elizabeth would then have to ask for ‘more’ before switching it back on. The whole scene was very animated, as we would all dance along with Elizabeth to the song.

At the end not only would Elizabeth ask for ‘more’ by placing her hand over her stomach (the sign should be ideally over her chest but any attempt at the sign is accepted at this stage) but she started vocalising the word ‘fun’. Clapping her hands together she yelled out ‘un’ five times in a row without any prompting. Like the signing, we would always repeat the correct word back to her in a sing-song voice that children particularly respond to. The word ‘say’ is banned from our vocabulary as it puts too much pressure on children and they respond by withdrawing more within themselves.

An advocate of play therapy I strongly believe in gentle encouragement rather than some of the heavier handed tactics employed by some of the programs designed for autistic children. Floortime and RDI are both excellent programs and encourages the child to engage with you through play. It is no wonder that one of my daughter’s first words is ‘fun’.

Ill

I take my daughters hand into mine, her face flushed with fever she lies sprawled on the sofa watching the television through half-lidded eyes. I try everything to keep illnesses and infections at bay; a diet of good organic foods, exercise and sunlight. Yet despite every effort, you simply cannot prevent your child from getting sick. Hypersensitive, I must administer Panadol suppositories as Elizabeth would gag and chock on any medicine taken orally. Along with plenty of fluids, the Panadol is the only defence we have, short of being admitted to hospital and being placed on a drip.

I learned this the hard way last year, just before she was diagnosed with ASD. She caught a virus that induced very high fevers. I tried to give Elizabeth some Nurofen but she gagged on it and threw up all over the kitchen floor. Desperate I tried to put it in her bottle but after one sip she refused it and every other liquid we tried to give her. A couple of hours later her temperature had reached 40 degrees, at which time she was also very dehydrated. I called my Dad and raced straight up to the hospital. By the time we saw the triage nurse thirty minutes later her temperature had reached 42 degrees. At this stage Elizabeth was crying unceasingly. A drip was put her arm to re-hydrate her and a suppository was administered, but not until they attempted to give her some painkiller orally, despite our protests, for which she threw up immediately. It took two days for her take a bottle again and three days before she began eating. Altogether she spent four days in hospital. Other little ones I knew who came down with the same virus recovered quickly with regular painkillers and plenty of fluid.

The Panadol finally taking the edge of her fever, Elizabeth sits up and gives me a beautiful bear hug before climbing down off the sofa and dashing over to her toys.

Patience

“Geez, you must have a lot of patience.’’ This line was uttered to me twice within a space of twenty-four hours. The first time was after calmly sorting out Visa issues with a group of travellers who barely spoke a word of English between them, by an Australian businessman who was stuck in line behind the group. I sighed in weary resignation to the Businessman, giving him a ‘what can you do’ shrug. In reality, I felt a deep empathy with these travellers and compassion for their plight, feeling resentful towards this Businessman’s lack of tolerance.

The second time was by a Mother at the local playgroup my daughter attends. Elizabeth simply refused to come over and join in with the other children, preferring instead to cling to the fence in hope it would be her gateway to freedom. I would have shrugged off these words if it weren’t for what she said next. “You must get really short with her sometimes.’’ I baulked at this. At the playgroup Elizabeth never threw things, or snatched toys, nor interfered with the other children’s play. She simply did not want to be there. And I could not blame her. It was a hot muggy day, the kind of dog day that makes everyone a little grumpy. I would also love to be in the cool, comfort of my home, sitting back and watching my favourite DVD. Not being forced to socialise of group of people who were not so tolerant of differences as they pretended.

Scooping Elizabeth up in my arms I gave her a kiss on her wet cheek, my heart going out to this beautiful, little girl. “Lets go home.” Giving a cursory wave to the other Mothers I walked through the gate. Perhaps if that Businessman had a child with a disability he too would be just that little more compassionate towards the plight of others. But I’m also starting to learn that perhaps I should not be so judgemental towards those like that Mother and her (genuinely) thoughtless comments. They live in a different reality to what I do and their comments are based on ignorance not spite. I too remember being quick to judge those parents with their screaming children trailing behind them in the shopping centre. Now I know life is not so black and white.

Labels

My life has been a chaotic mess of late which is only going to escalate with an impending job change (I finally got my rotation notice, six years overdue), so after another sleepless night and hot, muggy day I packed up my daughter and headed towards the local shopping centre to enjoy the cool air-conditioning and just unwind. Elizabeth fell asleep quite quickly so I was able to enjoy a Latte and just browse. About an hour later she woke up so I headed to the closest Parents Room to warm up her milk so I could finish up some shopping before we headed home.

Once we got to the Parents Room though all these plans came undone. Elizabeth, without any warning, started throwing up. Before I could get her to the sink she had thrown up over the pram and the both of us, leaving a large sticky puddle on the floor. Trying not to cry, I undressed her and threw her clothes into the sink and washed her face and chest down. Then, with a little toddler cuddling into my chest I tried to mop up the mess but it was just too much. Giving up, I rang my Mother to see whether she could get there with a change of clothes. At this time a cleaner came in to help clean up the mess, she even scrubbed the pram (I will be forever thankful for her help).

For the next twenty minutes a parade of perfectly coiffed Mothers with their $2000 Bugaboo strollers went in and out of the Parents Room as I stood there with Elizabeth in my arms, spew clinging to my thin shirt. I held Elizabeth closer, feeling their judging eyes upon me. Not one person asked whether I needed any help. When my Mother finally arrived I quickly dressed Elizabeth and head down, navigated my way towards my car, which happened to be on the other side of the shopping centre. On the way I passed one of my friends from work who pretended not to see me. We used to catch up regularly for coffee, that is, until Elizabeth was diagnosed with ASD. Like she was afraid it was some disease her child could catch. I use to feel angry, now I just feel defeated.

Empathy

After watching the news about the devastating fires down South and the terrible lose of life I began thinking how awful it must be knowing that your family was about to perish and not being able to do anything about it. Sensing my distress, Elizabeth cuddled into me on the lounge and stayed there until I had wiped the last tears away, giving me a kiss on the lips before going back to her toys. And they say that autistic children lack empathy.




Mother and Child Lord Frederick Leighton c.1865

A good day

After a disastrous day at the Special School last week I was a little nervous driving back there today, although I was somewhat buoyed by the successful session we had with Elizabeth’s Speech Therapist on Thursday, and the tear free day we had at the local Playgroup the day before. When we arrived the teacher was playing gentle classical music, which set a relaxing tone to the start of the playgroup. Elizabeth obviously did not have any ill memories of the room as she happily rushed over to the toy boxes and was quite content to explore while her Nan and I chatted with the other Mums as they arrived. She even seemed as excited as us when one of the little boys took his first tottering steps to the cheers of all (at two and a half it had been a long, drawn out battle to get him this far). For you see, for Mums like me with children with special needs, the ordinary is extraordinary.

We all then went out into the large playground where several activities were set up. Elizabeth had a great time going down the slide, getting pushed on the swing, kicking her feet through the sand pit and splashing in the little pool. Of course, she completely ignored the craft activities. But as one wise person said to me, choose your battles. We then went in for morning tea and to wind down for circle time. Elizabeth loves her morning tea, especially watching the other children. After she finished her yoghurt and crackers, she even shared a date scone with me.

During circle time I placed Elizabeth in a small chair as we thought she would be more comfortable within her own space and we were right. She was happy and relaxed during reading time and sat quietly as her teacher sang Twinkle Little Star and Baa-baa Black Sheep, incorporating the use of Makaton (signing) with me trying to keep up. This time the music was kept at an acceptable level and did not disturb Elizabeth’s sensitive ears. When the music instruments came out she fell asleep in Nan’s arms and didn’t even flutter an eyelid at the clanging bells. It was the end to a perfect day.

Post note: For those parents with young children with special needs the Playgroups at the Special School’s can be a wonderful, supportive environment, where you can talk out your frustrations with other parents who have some idea of what you are going through. The children in Elizabeth’s playgroup all have various disabilities, from global developmental delays, to autism, to cerebral palsy. But the one thing they do have in common is they are all beautiful, much loved children.

New Therapist

We had an appointment today with Elizabeth’s new Speech Therapist, Kate. As last week was more of a consultation, today was going to be the first one-on-one session and the test to see how well Elizabeth responded to Kate.

When we went into the therapy room Kate had already set up a PECS board (Picture Exchange and Communication System) with a card for bubbles and a card for a wooden toy with the corresponding items off to the side. Elizabeth settled herself down into one of the large, adult chairs, ignoring the brightly painted children’s chairs. I quietly closed the door, as Elizabeth is usually claustrophobic in small rooms, but she didn’t notice as her eyes were on Kate who settled on the floor in front of her.

Straight off Kate showed Elizabeth the board with the two cards and said in a bright, sing-song voice ‘’Bubbles?’’ She waited for a couple of seconds before dipping the stick into the mixture with exaggerated care and saying “Go” whilst making the corresponding sign before blowing the bubbles. She would then repeat the word “Bubbles” before popping the bubbles “Pop, pop, pop.” The whole scene was very animated and Elizabeth found it absolutely delightful. The wait between “Bubbles?’’ lengthened to see if Elizabeth would initiate the interaction by signing “more’’ and then handing Kate the card for “bubbles” (I had been doing hand-over-hand to show Elizabeth what she needed to do to have more bubbles).

Once Elizabeth started getting bored Kate moved to animal sounds. Showing Elizabeth all sorts of animals and making the sounds for them to see whether Elizabeth would imitate her. She did not but she watched Kate with great interest. It was at this stage Elizabeth realized the door was closed. To quickly divert her Kate pulled out the bubbles again and after three goes Elizabeth started picking up the card to initiate more bubbles. On this happy note the session was ended.

The appointment lasted for forty-five minutes and almost the whole time Elizabeth had her attention on Kate. Kate was actually quite impressed by this as she said most autistic children would usually spend the time pulling her office apart. When Elizabeth was around twelve months of age she loved pulling my books down from the bookcases. Each time I would firmly say “no” and redirect her to her toys (I don’t believe in hitting children). When she realised that she never got reprimanded when she made a mess of her toys she started leaving my books alone. This soon translated to all mummies valuable possessions. Now when she goes to playgroup or a friend’s home she goes off and plays with the toys (well, her version of play) but never pulls objects off shelves or gets into anything she shouldn’t. Of course this doesn’t stop her from looking, I often find her on her tippee toes checking out the contents of a bookcase with the look of mischief on her face.

After such a successful session we have now plan to see Kate on a weekly basis. It is so wonderful to find someone Elizabeth has such a great rapport with. After yesterday’s success at the Playgroup and today’s session, the crying, miserable child Elizabeth was on Monday at the Special School seems a lifetime away.

Playgroup

After a very upsetting day at the playgroup at the special school in which the too loud music was just too much for Elizabeth’s sensitive ears, I decided to take her to the playgroup at the local church. I use to take Elizabeth there up until her diagnoses at age two. I don’t know why I stopped going, perhaps everything else just got in the way. But I remembered the lovely, elderly lady who took the group and all the wonderful toys and activities she put on for the children. Not knowing how Elizabeth would react nine months later, I took my mother along for moral support.

I made sure we were the first ones there so Elizabeth could get used to her new surrounds. At first she was hesitant and a few times she put her arms up to be cuddled with that all to well known desperate look in her eyes. I was a little apprehensive at this stage, as I really wanted Elizabeth to have a good time. Spotting a large plastic, crocodile I settled Elizabeth onto it and showed her how to rock it. This seemed to distract her for a while so I could greet the other mothers.

The more children that arrived, the more Elizabeth settled in, especially when she realised that Nan and Mum weren’t going to force her to do any of the craft activities. Although she didn’t play with any of the children she watched them intently, her eyes following everything that they were doing. After a while she would check out a toy or chill out in the little cubby they had set up. She even had a couple of goes on the slippery slide (although it was not as fun as the one at the park). When morning tea came she sat with the other children, devouring her plate before watching what the other kids were eating. She even stole a biscuit or two (only nine months ago she did not know how to chew). She did not get off her chair until most of the other children had finished eating and then she allowed Mum to wash her hands. I was beaming with happiness at this stage.

After morning tea it was bubble time. Elizabeth and a little boy were the only two who were interested in the bubbles. In fits of giggles they crashed into each other while they chased bubbles about the yard. In that moment she looked like any normal, happy two year-old. After this she even got the courage to go up to each child and greet them with a little hand flap. Although one child did gently push her away and tell her that it was now tidy up time.

But it was music time that had me filled with pride. Elizabeth was the only child who paid attention to Aileen as she did renditions of Five Little Ducks, Heads and Knees, and many others. The other children were two busy fighting over their instruments or bashing their maracas together under a table (for which they got a stern warning). And when Aileen put on a Wiggles tape Elizabeth was the only child who got up and danced. Despite the chaos around her I was blown-away by Elizabeth’s level of concentration, but I guess that is one of her autistic characteristics.

Although Elizabeth is, in many recepts, quite different to many children her age, she has so many amazing qualities as well. I was so proud of her today. She is growing up to be such a gentle natured, delightful child. I’m actually beginning to look forward to tomorrow.

First Therapy Appointment

I had my daughter’s first Speech Therapy appointment for the year this week. I was a little apprehensive as the Therapist was new, and after last year I had my doubts. Any reservations I had, however, began to dissipate the moment I meet Kate. Whilst young, she was also enthusiastic and had not yet been jaded by the whole public health system like our previous therapist had been (which as a Public Servant, I sympathise with). But most importantly, she had experience with children with ASD. This is very important as ASD children process things very differently to Neuro typical children.

Although Elizabeth would be classed as high functioning, she is what we will call an ‘own agenda’ child. If the activity does not interest her, it takes a lot a persuading to get her involved. Which means the therapy sessions have to be kept interesting. This also translates with people. If she is not interested in a person she simply ignores them. I still have not worked out what makes her take notice of some people more then others. I know one thing; she is drawn to children (although mostly only to observe them) and men. She loves my brother but ignores his wife. She would greet him with a massive smile and follow him around the house the whole time he visits, but she barely acknowledges his wife with a glance. This is also true with a couple I am good friends with. She also gives the most beautiful smiles to the construction workers who come in for their lunch at the local shopping centre but ignores the lovely lady who makes our coffee, despite the fact that she makes an effort to greet Elizabeth every-time she sees her.

Actually, the only woman she has really taken too, other then her Nan and myself, was the Physiotherapist, Barbara, who visited her playgroup last year. Although she didn’t need any Physio work, Barbara would take her through the obstacle course simply for the pure enjoyment Elizabeth got from the interaction. Despite these personality quirks, Elizabeth is very well behaved. I've rarely had to experience the tandrums the terrible twos are renowned for. But that doesn't mean she is not a typical two year old in other ways. She still gets very grumpy when she's tired or mum has not put on the right DVD.

I believe with Kate’s bubbly personality, she will be able to engage Elizabeth, or at least draw her attention long enough to complete an activity or two. Kate also employs a holistic approach, not only looking at speech and communication but diet as well. I was very pleased to note that I was doing everything right, nutritionally wise. I also learned that whilst I thought Elizabeth was characterised as non-verbal, this was not actually the case as she uses consistent sounds to communicate and would on the rare occasion say a word.

The other day whilst my Father was giving Elizabeth a piggyback ride around the complex in which I live she said ‘hello’ to a couple of children walking by. This was not a figment of my Father’s imagination because the children promptly said ‘hello’ back to her and gave her a wave. Once, forty-five minutes into a therapy session Elizabeth had had enough and started crying, ‘out, out, out’. Even the occupational therapist at the time could not believe her ears. These incidents can be very frustrating as it demonstrates that she can talk, but at the moment it does not suit her to.

I am hoping that using Makaton (sign-language), along with a picture exchange system will give her the initiative to start communicating on a verbal level. Or at least, aid her understanding of language so she can communicate by electronic means if she so chooses never to talk, something I’m starting to accept. There are many people out there for various reasons cannot communicate verbally and are extremely intelligent people. But as most autistic children do not begin to talk until the age of four, sometimes as late as eight, I still have a long way to go before I can close that book.

Last year was a difficult year, with Elizabeth being diagnosed with ASD the day after her second birthday and the enormous impact this had, not only on my life, but on my parents’ life as well. But this year has definitely started off more promising. Elizabeth begins playgroup again at the Special School on Monday and soon we will be starting up a home-based program involving a Speech and Occupational Therapist as well as her regular appointments at the Children’s Therapy Unit at the local hospital. On the top of that I’m attempting a Master’s of English as well as working three days a week at the International Airport (mostly night shift so I can fit in the therapy), so it’s going to be a busy year.