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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Blindsided

Day Three: Autism Awareness Month blogathon

My 5yo boy L has autism. He is the reason I am furiously writing a post a day for the month of April. Here is the story of how I became an autism mum.

My boy L came into my life quite serendipitously. I had been a foster carer for only a few months and was in between placements when I was asked to care for a 2yo for the weekend. Her carer was taking on a newborn straight from hospital and she wanted a couple of days break to help settle him in.

When the other carer dropped her 2yo off at my house, she had this little newborn with her. He was incredibly tiny and had a head full of beautiful auburn coloured hair. After the carer had left, my niece Pearl said to me ‘Rose – you should have just grabbed that baby and run! He is SO beautiful!’

Later in the week I laughingly told my support worker what Pearl had said – ha ha! I had a full time job, my plan was to foster school aged kids, I’d been told time and again during the training process – do NOT hold out for a baby, you won’t get one! I never even considered it, it just wasn’t in the plan.

My support worker told me that actually, they were looking for a long term placement for this little bubba….would I be interested? I was at work when I was having this conversation and it was one of those moments when the work environment faded into silence, the world stopped spinning and I was suspended in time.

My brain started whirring, thinking about all the practicalities, my job, all the stuff you need for a baby, other commitments…my life. My worker gave me a little more information about why this child was coming into care, a bit of family information and also said that it wasn’t confirmed yet as the Department were still in the process of making sure that all options within his birth family were being explored and that may take another couple of weeks’. That made it easier. I could say yes and it probably wouldn’t work out.

‘OK definitely consider me’

Life continued and a few weeks later, I get another call at work – can you come into the support agency’s office this afternoon – we want to talk to you about this possible placement. I think I may have levitated. I definitely flew into their offices. Work? Who cares?

The discussion was very positive. The Department had made their decision and they would be happy for me to become his long term carer but I would need to take time off work and when/if I returned to work, I would need to work part time. We discussed a plan to transition him into my care.

His carer had noticed that he wasn’t doing any visual tracking and seemed to be avoiding eye contact, so she had organised an appointment with an ophthalmologist that week so asked me to come along to that. So one of the first things we did together was to go to an appointment. Little did I know just how many of those we would attend over the next few years.

The specialist pronounced him ‘totally blind’ that day. The structure of his eyes was good, but he was not responding to light at all which meant that the issue was neurological (hmmmmm). He said either he’ll slowly improve over the next few months or he won’t and he will stay blind permanently. OK.

After the appointment I spoke with the carer outside the building. She was shocked and asked me if I would still take him into my care. There was no hesitation. Of course I would. I had the next few days to absorb all this, do a bit of research and find out who I could get some more information and support from.

None of this mattered a scrap as I prepared for this little one to move into my home and my heart.

Laser Beak Man, A Bridge, A Foundation

Day Two: Autism Awareness Month

Today is World Autism Awareness Day – declared by the United Nations, no less. But last night belonged to Tim Sharp.

A crowd of about 100 people gathered on a footbridge over the Brisbane River as one of our stunning autumn days turned to dusk. There were kids running around (including mine) picnic blankets with food and drink and a wonderful feeling of excitement as friends and families gathered to watch one of our landmark bridges become a canvas.

Tim Sharp has autism. He is 23 and he is an artist. He invented the character Laser Beak Man who appears in all Tim’s artworks, usually with something to say. His work is uplifting and humorous and Laser Beak Man is a very unconventional and literal superhero.

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It was an evening of firsts. It was the first time that the William Jolly Bridge had been lit up with projected artwork that had a (very worthy) cause attached to it. It was the first time Tim’s work had been projected onto a structure in this way. It was so exciting to see the images slowly emerge as the natural light faded and night became darker. The bridge looked amazing.

William Jolly Bridge - Laser Beak Man

Tim’s mother Judy and brother Sam were there. Judy spoke of the journey that brought their family to this moment. She’s an amazing woman who, without all the services and support we have today has guided both her sons (Sam has just finished competing in the Olympics swimming trials) towards their future with heart and intelligence.

Judy then took everyone by surprise when she announced the launch of the Tim Sharp Foundation. It will be a non-profit organisation which helps to connect young volunteers with autistic young people. The volunteers commit to taking them out once a week to an event or activity, that anyone their age would enjoy. It could be going to see a band, going to a movie – whatever works. What a fantastic idea! I can’t wait to see the Foundation get off the ground and I hope I can be a part of helping to make that happen.

At this point, there was another first. It was the world premier of the Laser Beak Man song. A while ago now Tim was contacted by a band based in Nashville, Tennessee. They had googled the words ‘happy colorful art’ when they were looking for artwork for their album. Laser Beak Man came up in that search and a unique friendship was born. That group is the Ghost Ballerinas and together with Tim they have  written the Laser Beak Man song. Last night the song was played publicly for the first time ever. There was a lot of crazy dance moves going on – the kids loved it!

I finally had to drag my three boys home as they were exhausted from having too much fun and it was bedtime for them. As we left, some of the kids had taken over the microphone and were taking full advantage. I could hear 5yo Jack reciting the alphabet backwards perfectly.  A great way to end the night.

Congratulations to Tim and his family. What a wonderful achievement. So much to look forward to.

Here’s some of the media coverage:

Chanel 7 news 

Channel 9 news

ABC Radio

Mount Everest

Day One for the Autism Awareness Blogathon

(A note: to all those people who are here after searching on the topic of Mount Everest, and there are a LOT of you – sorry! This is about my personal Mount Everest, not the actual mountain)

I’m not starting at the beginning. I’m starting in the future. Because as much as you worry about things like aggressive behaviour, stimming, echolalia, noisemaking, sleep and eating issues, obsessions, spitting and all the other really fun challenges a child with autism will present to their families, the biggest challenge by far is the future. It’s the great unknown.

image credit: asiapacific.blogs.ie.edu

As parents, we want everything that any parent wants for their child –love, happiness, fulfilment, friends, reaching their potential etc. But we want more, much more. Although the process of diagnosis and early intervention is confronting and arduous, I have a sneaking suspicion it might be the easy part.

Little kids are cute, they scream, they act out, they don’t play nice, they get messy and they find it hard to manage their feelings. An autistic child is all those things plus delayed and exaggerated. We are bigger and stronger so we are able to handle all that (mostly).

By the time they are teenagers the tables have turned. They can be bigger and stronger than us. By then you better hope you’ve got their toileting and self care skills happening. You’re hoping their language and/or communication skills are functional at the very least. Managing their emotions and impulsive behaviour? – yes please! Massive supermarket meltdowns? – a thing of the past that you can have a good laugh about. Please.

What is the future you see once your beautiful child has left the (hopefully) safe haven of the education system? Is it a disability pension and parental care at home? Is it a job and living independently? There’s a massive world between those scenarios and they aren’t even the extremes.

I might have days where it’s all I can do to get through it, nights where I’m waking with tears cos I’m not living up to some crazy version of an ideal parent that I have stuck in my head. But I want to split my focus between now and the future. I can’t take my eye off today, but I want to put effort into creating the best possible future for my little boy. If I don’t start now, it will be here before I know it and I won’t be ready.

image credit: personal-development-is-fun.com

I have a feeling that this is Mount Everest and I’m not even at base camp. I haven’t even got all my supplies together. I don’t think I’m going to be able to rely on government and good will to make the future one to look forward to. Like most things, if you really want it, you’re going to have to work for it. So that’s what I’m going to do.

Tomorrow: Light it Up Blue with Laser Beak Man

Light It Up Blue with Laser Beak Man

The Quiet Before the Storm

I’ve been a bit quiet for the last week. Not because of anything in particular but because of life in general. Every day has been full of appointment making, appointments, some training, catching up with my lovely ‘in real life’ friends. Not that any of you aren’t ‘real’ or ‘alive’, but…you know what I mean. All this plus the regular three boys & a mum routine.

However, I’m about to make a bold statement. So prepare yourselves.

April, as many of you know is Autism Awareness month. Starting this Sunday 1st April, I’m going to focus my blogging/writing efforts on autism for the entire month AND I’m going to go for a daily blog (as opposed to a daily jog – something that would probably benefit me more…however…).

For those of you who don’t live with autism, don’t be put off. I’m hoping that I can keep the content relevant,  interesting, intriguing even, certainly mind expanding.

Watch out neurotypicals, neurodiversity is coming to your inbox.

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Hands

A few months ago I read an incredibly moving and revealing post by Julia Bascom at Just Stimming. The post was called Quiet Hands. Reading that post was a revelation to me and it caused quite a stir in the autism community as it went viral. I took a copy of it in to the psychologist at my boy’s early intervention centre AEIOU – she needed to know.

This morning I revisited Julia’s blog and was really interested to read a follow up post that she had written about how she came to write Quiet Hands and the impact of going viral.

She has helped me to understand my boy in a way that no therapist or autism expert could. I’m a better parent because of Quiet Hands. I’m a better person.

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The Good, The Bad and the Beautiful

The Good   Life is pretty busy with three boys. Dealing with three different birth families, contact visits, extended family, the department, the support agency, disability services, medical and therapeutic appointments and more means the week can be very full. Do I actually have a social life, you may ask? Not really, I may answer.

But…on Monday afternoons we have a regular visitor – our Pyjama Angel Tracey. Pyjama Angels are volunteers who once they are trained and approved, commit to a weekly visit with a child or children who are in foster care. The goal is to narrow the well documented literacy/numeracy gap between children in care and those who are lucky enough to grow up in a loving birth or adoptive family.

So each week, Tracey comes over to our little house and spends an hour or so with the kids. The boys all have a lovely time exploring and make a great big mess as they go through Tracey’s box full of books, games and puzzles from The Pyjama Foundation’s library.

Tracey has been coming to us for around 2 years now. She’s been incredibly patient, getting to know L, building a relationship with him, following his lead and his interests, chasing him around the trampoline, putting up with the pinching & pushing, diverting him on to activities he enjoys. Coming back for more, consistently.

What a wonderful gift that hour is. We love having a Pyjama Angel and love Tracey in particular – she’s good! She’s very good!!

 The Bad   Now that the school year is well and truly up and running, I have wanted to set some of L’s extra-curricular activities and therapy sessions in place. School commitments mean that there is precious little time during the week to squeeze them in.

Before starting at AEIOU where there are in-house therapists, L was going to a practice which included speech, OT and physiotherapy services. L’s OT there was very experienced and she certainly helped in getting some functional skills off the ground if not perfected. This year, because of his sensory seeking behaviours I have been looking for an OT who takes more of a sensory integration approach.

A couple of weeks ago we headed off to a new OT with high hopes. After two sessions though, I gave him the sack. The main reason being that I was coming out of these sessions feeling really depressed. To me, this OT seemed to be out of his depth, overwhelmed by L’s behaviours and even worse, he felt the need to tell me how ‘low functioning’ he was. Thanks for nothing – I don’t actually need to hear that. This was making what is already difficult feel bad, really bad.

This OT was clearly not a good fit for me. I need someone who can relate to my boy, find the little rascal within and enjoy the work they do with him.

Today we have headed off to a new OT. I already feel uplifted after just one session. She quickly showed her understanding of where L is coming from. No more clinic sessions (oh joy), she will be visiting him at school and at home. This is looking good, very good!

Yes Please!

The Beautiful   This week has been an amazing week for little N. He will be 2 in another week, but this week was the real milestone. He’s been working up to talking for quite a while. After all the speech therapy and language development training I have done with L, I am very aware of the signs and stages.

Knowing that he was understanding a lot of what was being said, I knew that his expressive language wouldn’t be too far away. Well…this week he has really started talking. It’s so exciting to see how easily it is coming to him.

Every day he is saying a minimum of about 20 new words. It’s incredible. He’s gone from a vocab of about 20 words to over 100 in a week. Last week it was pointing at what he wanted and saying ‘this, this, this!’ This week he is pointing and saying ‘snack, drink, book, stuck, open, more, yoghurt, brekkie, grapes’ and on and on.

This morning we were looking at a flash card app on the ipad – he copied every single word. No matter how hard they were to say, he gave it a go. He was putting the sounds to the animals (you try making the sound of a camel!) and even a few actions that we have been doing.

How beautiful to see him truly discover the magic and power of language. Very beautiful!!

And that was the week that was.

Thank Goodness

There are somethings about raising a child with a disability that you simply can’t share with everyone. Not everyone would understand. Certain experiences simply would not elicit the compassion or the kind words, only the recoiling horror, terrified eyes and the truly genuine relief that it’s not them that has to deal with it.

The only people who you can truly share these gory details with are other families in the same situation, who have their own horrible experiences to share. Then, strangely enough you can have a good laugh about it. Thank goodness for that… and for hospital grade antiseptic wash (thanks Abbi).

Laser Beak Man

I wanted to share this video with you. It presses lots of buttons for me – all good ones.

It is a profile about a very special person – Tim Sharp, a young man with autism who comes from my hometown of Brisbane. He has a wonderful artistic talent and has created the character Laser Beak Man. The film was directed by a friend and produced by the government department I used to work for (yes, occasionally government departments do something valuable and special).

Most importantly though, it shows (and gives me hope for my little guy) that we can all have a meaningful place in the world.

By the way, don’t you think it’s interesting that autistic and artistic and separated by only one letter.

AEIOU

This year my 4 year old L has been attending an early intervention centre for children with autism – AEIOU. For me, it was the big push to help him to progress as much as possible before starting formal school in the new year.

AEIOU is a non-profit set up to provide the best possible practices in early intervention. The people who work there are passionate about their work, amazingly patient and caring not only of your child but of the whole family.

This week will be L’s last attending the formal program. He’ll do a couple of weeks of the holiday program and then it’s over and out. It’s going to be sad to say goodbye to the people who have been helping me to give him the best possible start, sad to lose the community we have built up in the time he has been there. I’ll miss the mum’s on a Wednesday morning where we can say anything, laugh like fools at the crazy situations we find ourselves in, shed a tear if necessary, and support each other to keep looking forward with hope for our kids.

I’ll miss some of the kids too. I usually spend about half an hour in the playground each morning when I drop L off for the day. My other two are with me of course. N at 21 months, just loves to hang out there. Some mornings when we arrive, the energy in the playground is absolutely electric – 40 pre-schoolers demonstrating the breadth of the spectrum they are on can be pretty dynamic. But N just waltzes in there like he owns the joint and has a whale of a time playing on the equipment, jumping on the trampoline with the big kids, digging in the sand pit and hitching rides on the back of a trike.

The baby gets a huge amount of attention from a small group of kids, all acting independently, but extremely interested in him and his pram. We’ve all become good friends over the year, I’m lucky enough to get lots of cuddles and the occasional kiss from these little darlings.  Baby J shows what a bit of motivation can do for language development – those kids can’t stop yakking about him! Anyway, we will miss this morning ritual.

I know that next year, there will be new rituals, new Mum’s groups, new teachers, new kids and we will fall into a new rhythm, but till then I’m going to miss what we had this year. So a big, enormous thanks to the wonderful teachers, therapists, facilitators and admin staff at AEIOU. They’ve made a world of difference for my little man.

This is the AEIOU Christmas card – it’s worth having a look at.