Water Mum!

My oldest boy L who is 6 and has autism, has always liked water. A bath was always a good way to calm him down, get him engaged in activities, to connect and have fun.

happy boy in water

happy boy in water

His journey towards language and communication has been a long and winding road. He is not visually motivated (he has a cortical vision impairment) so Makaton (a simple sign language), PECS (picture exchange communication system) and even the iPad (needs no description!) have not been at all interesting to him. He can not interpret a drawing or visual representation of an action or concept.

For a long time he babbled away making speech-like sounds as a baby does. I used to wish for an interpreter. I’m pretty switched on to language development, but there just did not seem to be any meaning or intention associated with the sounds he was making. Still… I encouraged, I read to him, I researched, I did Hanen training, I talked and talked to him, I played endless games of peekaboo and ready, set, …. and always left plenty of time for him to process and respond.

Slowly, slowly he started to use a few words here and there. Snippets of songs would emerge and then fade away, leaving me wondering if he ever really sang them. About a year ago I wrote about a moment we had where I felt like we’d actually had a very brief, but oh so precious first conversation.

The next twelve months were like living in an echo chamber. Echolalia is something many autistic people have as a part of their speech pattern or language development process. Simply put, it is echoing back what has been said. So if you ask a question: do you want an apple? the response will be ‘do you want an apple?’. There are many permutations of this form of communication. Some people can recite the entire dialogue from a movie, but not my boy! Oh no! He would find one word or phrase and stick to it with a passion.

Him: What? Me: What? Him: What? etc.

Him: What? Me: What? Him: What? etc.

His two main words? Mummy (I thank you for that my beautiful boy) and toilet. Yes…toilet was a word that was repeated endlessly throughout the day. Some days it was funny. Other days I felt like I was going crazy. But I was always, always grateful for the fact that he was actually using language. A somewhat limited repertoire, but using actual words.

He’s had an incredible spurt of language development in the last couple of months. It’s gone hand in hand with some absolutely horrific, nerve jarring screaming, screeching and general stimmy noisemaking (see my Yoko Ono post). But he just keeps coming out with new words, new phrases, labels, requests and yes…actual sentences.

Language UP, Frustrations DOWN.

He still reverts to old habits, but when he is reminded that using words is an option, he will give it a go.

So today, when we were driving along this morning, we crossed over one of the main connecting bridges in our beautiful river city and from the back seat I hear ‘Water,  mum’. Me: YES! Water!! Can you see the water? Good boy!!! You are using your words! and lots of effusive praise etc.

Water, Mum!

Water, Mum!

This afternoon, crossing back over the river (different bridge) ‘Water, mum, water!’ Me: WOW! YES! there’s the water AGAIN! blah, blah, blah. Then we crossed over a smaller creek which leads to the river: ‘Water, mum!’ (I think you know what I said).

It’s a real milestone. A genuine, corner turning milestone for this little guy who has faced so many challenges in life already. I’m so very, very excited for him.

Also, and this is big news too, he can now officially jump. YES!

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Ch ch ch ch Changes

Day six of the Autism Awareness Blogathon

Part Four. Part Thee is here, Part Two is here Part One is here

Isn’t the brain an amazing thing? We take it for granted a lot of the time, but it’s always there processing away. My boy’s brain was going it’s own way in a few different areas. Processing was slow but there was always progress and so long as there is progress, you know you are heading in the right direction.

There were a lot of changes in this year. Baby E went to her new family. What a wonderful experience that was to be able to introduce a bubba to their new mum & dad. So wonderful, I signed up for another little pre-adoptive bub – Baby R, a boy.

Now I know that change can be a massive issue for some kids on the spectrum. For some reason, this is not the case for L. At this time, he was very accepting of all these little babies and mostly just got on with his own thing. Anyway, he wasn’t officially on the spectrum yet.

We’d had our official diagnosis of cortical vision impairment (CVI). It turned out that there was a link between L’s vision issues and the meds his birth mum had been using during pregnancy. The main ways in which L was affected were that he had very little peripheral vision (interesting, given that this is often an autistic preference rather than direct eye to eye contact). He finds it difficult to understand changes in texture, especially on the floor and his depth of field is fairly poor also. This means that he finds it hard to judge something like steps – a big step or a little step, a step up or a step down. He has found it very difficult to understand representational images (ie PECS). For a long time he would prefer to flick the pages of a board book rather than look at the images. Visually motivated? No.

L was also prescribed glasses. So we slowly started getting him to wear them and he adapted to them over a couple of months. He’s pretty rough on them too, so his glasses only usually last about 6 months or so, if I’m lucky.

I’ve certainly had my share of massive meltdowns, but at this point L was relatively easy to manage. I’d wanted to keep everything very consistent and predictable for him, but with so many of the people who I love living in other parts of the country, the time eventually came where we were headed off into unknown territory – a holiday.

We travelled by air and I had every possible special, extra fun and entertaining activity ready for the flights. I had a supply of junk mail for him to thumb through (a new interest) and various stringed toys of course. He was pretty good all round. He was certainly no more trouble than any kid on a plane. What I hadn’t expected was the burst of development in so many areas that followed this trip. His language jumped up a notch, he added new play routines to the repertoire and he really enjoyed meeting all these new people, spending time with cousins, family and friends and walking, walking, walking! He won a lot of fans on that trip.

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After we got home I made up a little photo album for him of the trip and all the people that he’d met and the places we’d been. He still loves to look through that album though it’s a little worse for wear these days.

The evaluation process for autism took quite a while. It involved a number of visits to the specialist developmental clinic at the main children’s hospital. They also asked for reports from any professionals who knew him. He had started with an OT & physio program and they were able to provide a detailed update on where he was at functionally. Of course the Narby professionals were also able to contribute a lot of information as they had seen him now for over 2 years.

Before we knew it another year had passed and he was three years old. An appointment was set for April and this was when the diagnosis would be decided.

All along as I’ve said, I wasn’t worried about what that decision would be. This is not because I didn’t care, but because a label would not change anything for me. Also, I knew that he’d been given every possible early intervention from a very young age, so I knew that whichever way the cards would fall on that day in April, I was ready for it.

I’m ending this story here for now. You will find out why when we get to day 26.

A note about photos: of course I have a million photos, I’ve tried to choose ones that show him without breaking any confidentiality

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.