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.