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.