I Knew Better

Day Four of the autism awareness blogathon and Part Two of my autism mum story. For Part One go here

In the week before L came into my care I was as jumpy as a little lamb in springtime. I bought things like a pram and a car seat and left them in their boxes, not totally convinced this baby would actually materialise. I made all the arrangements to take leave from my work and on my final morning there, my colleagues put on a morning tea. There were lots of very warm, kindhearted wishes for me and a beautiful welcome for a baby nobody had set their eyes on. Was this really going to happen?

On that first morning, I drove over to pick him up from the other carer. They gave me a box full of clothes and blankets, a little packed bag of the things that were ‘his’ and a little baby boy who was now 6 weeks old. As carers do, they shed a few tears, sucked it up and said goodbye to him. I drove off. He had finally arrived.

I didn’t drive home. I drove straight into the Department where his birth mum was waiting for her visit with him. So he was barely in my arms before he had to be handed over. His birth mum had 3 visits a week for an hour each. I took myself off for a coffee and sat there stunned, as I contemplated this major change in my life.

I can hardly remember those first few weeks. They passed in a blur of bottles, nappies/diapers, short sleeps and contact visits. After the first 50 or so bottles you start to get an idea of how this whole thing works.

The advice of the ophthalmologist was ringing in my ears however and I knew I needed to get things happening – visual stimulation. I rang Vision Australia and spoke to someone there. They suggested that I speak with Kerry, a head of special education at the school for visually impaired children (Narbathong). I connected with Kerry and the next week she was knocking at my front door.

She came over to meet the little man in question and also brought with her a wonderful contraption to lend me for the next few months. That contraption was called a ‘little room’. There were two parts to it. The base was a wooden platform built to stand about 2 inches off the ground. The top part was a three sided clear perspex cabin which fitted onto the base. Hanging down from the roof of the cabin was a whole range of items – everything from crinkly wrapping paper to a cup to a toothbrush. There were about 20 different things, all different textures, shapes, making different noises etc.

The idea is that the baby (they have bigger ones for bigger kids) lies in the little room for about 20 minutes a few times a day. They are encouraged to reach, touch, explore and use whatever vision they may have. The platform also acts as a resonating board, so that any sounds they make are amplified. L loved his little room. He’d get in there and kick his little legs like pistons for the full 20 minutes.

At 5 months we went back to the ophthalmologist and he was very pleased with his progress. Definitely a case of delayed visual maturation, he was not blind.

Narbathong (Narby) had a weekly playgroup for children with a visual impairment. We started attending this once L was 6 months old. Through the playgroup we had access to a special ed teacher, a physio, OT and speechie. We also had other specialists in orientation and mobility and a music therapist and were also seen by the Optometrist and Ophthalmologist at the Paediatric Low Vision Clinic based at the school. It was at this clinic that we got our first diagnosis: Cortical Vision Impairment. The brain (yes…again) was not processing visual information consistently or effectively.

That playgroup meant so much to me. Wonderful families and beautiful children and the staff were just incredible. L would attend Narby until he was 4 years old, graduating from the playgroup to the 3 days a week pre-school group when he was 3.

As things progressed, it was Kerry and her team at Narby who supported me as it became more and more clear that there were other issues we were facing.

L was always a delightful baby, happy, easily settled, enjoyed playing with his toys, being read to, sung to. He was always a bit underweight, and was lactose intolerant, but enjoyed eating and loved to be around adults. He was a late crawler (12m) and late walker (2y) and with no words, no gestures, no pointing, no shared attention…well, you know where this is going.

 

I had been to the paediatrician when L was about 18m old. I was prepared. I had a list. It was a list of things that concerned me about L’s delays and his behaviour. The doctor said not to worry, he was still young and that we’d see how he’d progress, then start working through some of the eliminating tests.

He’d had a few febrile convulsions – seizures in association with high temperatures but had generally been well. So we had the EEG, they did an MRI of his brain and chromosome check. No conclusions, everything within the normal range. But I knew better.

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8 thoughts on “I Knew Better

  1. Rose you have found your stride as a writer! Fascinating and informative! I love the story—even the hard parts—and the photos as well! Looking forward to hearing more!

  2. Thank you for sharing such a precious story. How wonderful L and your paths crossed. I can think of no one better to be his mother. I loved how resourceful you were in those early days. Such a great advocate for L. I loved these pictures of your precious L. Such a sweet boy, with such a clever and caring mumma.

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