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!

Advertisements

The Reason Why

I went up to Darwin last weekend to help celebrate my brother Tom’s 50th birthday. He’s a modest man but has a history of some fairly outrageous and/or hilarious outings. Some of those had to be trotted out as part of the formalities of the evening, just to remind him of that wild young soul who resides deep inside that middle aged, respectable, family focussed, coffee connoisseur.

This is the boy who was Tommy, with Ringo our dog.

Cute little blondie in his homemade shorts

He was taught everything he knows by our sister Lizzie who is only 13 months older than him. Seriously…once she started at school, she sat him down every afternoon and taught him everything she’d learnt that day. But he quickly became a long, lanky streak and Liz would never have the same control over him that she did in that first year of school.

Tom is strong!

Tom was always good at maths and eventually studied economics. Before that though Tom took to the road on his motorbike and rode from Tasmania (down near Antarctica) to Darwin. At one point when I was fanging around the countryside Tom and I decided to ride from Brisbane to Sydney, where I was living.

Tom’s bike (if I remember correctly) was something like a Kawasaki 750. We’d decided, in a moment of brilliance, to leave Brisbane about 7pm and ride through the night for the 10 hours or so it took to get to Sydney. Not one of our better decisions. We shared the riding, but the bike was really too heavy for me. Never the less, off we went into the dark of night. We did OK until sometime after Tamworth when I was riding and Tom on the back kept falling asleep. I remember the helmet he wore banging into my back as he’d drift off. I’d do my best to wake him up by elbowing him violently. Eventually in the light of early dawn we swapped again and took off with Tom riding. Only a little way down the road we blew a tyre. This is not too much fun on a bike and we were lucky in so many ways to survive that moment. I then had to hitch a ride with the tyre into the nearest town, wait for the mechanics to open, get it fixed and hitch back out – extending the trip by another few hours.  We made it by the skin of our teeth. So, so tired.

I took this photo a couple of years later when I and my fellow band mates stayed with Tom in his share house in Brisbane in 1985.

The Uni years, Brisbane

Tom has three kids and a step-son with his partner Lorna. They’ve been together for 22 years now. They are quite social, but don’t throw too many parties these days. This was one for the books. A milestone birthday with people coming in from all over the country to celebrate it with him and his family.

Party preparations were exhausting but ultimately worth it. A sit down dinner for 30 under the swinging lights and the stars in a bushy suburban back yard. Great food, including some pretty amazing cakes. Lots of stories and reminiscences, laughter and fun. One of the best moments was when Tom, in his speech told us how happy he was with his wife & life.

Here’s a couple of my favourite photos of the night.

the cocktail menu

 

Some of Tom’s family

the old and the young(ish)

 

pouring myself a glass of wine

 

party decorations – Tom’s shirt collection

Unaccustomed as I am…

 

 

 

 

 

 

Mummy’s Car

Mummy’s car is a bit of a bomb. It’s a generic, utilitarian workhorse to me. But to my 2yo N it’s the best playground around. It’s the most fun you can have in an enclosed space. It’s got so many buttons to press and knobs to twiddle he can barely contain himself.

So now we have to negotiate over how much time we can spend playing the ‘mummy’s car’ game. I try to give him a bit of time by putting him in the car first and then loading up the other kids, bags, pram etc., then putting him in his car seat last. This involves dragging him kicking and screaming from the drivers seat to his seat, holding this wriggling, struggling, amorphous little blob of humanity in place so that I can get his seat belt on while he’s screaming at the top of his voice ‘mummy’s caaaaaaaarrrrrrr! mummy’s caaaaaaaaaaaaaarrrrrrrrrrrr’.

aday.org 

I was kind of organised to do this. I’d made a note in my calendar to take a photo and upload it. I loved the idea of it – one day on earth. People from around the world all taking photos of their day on that particular day. So I started out trying to get some kind of photo of the four of us – kind of hard when you are the photographer and there’s no extra kid wranglers around. So this is the only shot I got of all of us.

 

Note the pincer grip L has on my cheek and the elbow to the throat. Nice! He thought it was hilarious. The other boys joined in on some of this action too.

little boys attack mummy

Later that day I’d had a couple of friends over for lunch so I thought I’d try to capture that.

 

It was kind of fun and it’s always good to catch up with my girlfriends, but the photo was more documentary than art.

So later that day, as we do most days, we were down in the back yard. The kids were playing and I was getting the clothes off the line when…I captured this precious moment. It’s a first. Baby J taking a walk (assisted by L’s old ride on bus). Look at that confident stride! He’s strong as a ox this kid and has thunder thighs of doom, but absolutely, unequivocally a beautiful little soul.

Anyway the day went by in a flash and I forgot to upload anything…

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.

Darling Mummy

backyard fun in summer

Our friend O

We had a great day today. This morning L just couldn’t stop talking. He was copying nearly everything I said to him – words he’s never said before. I was baking banana bread and got him to help me with mashing the bananas.

Me: ‘We’re squishing the bananas, squish, squish, SQUISH!’

Him: ‘Squishing bananas!’

OK, this is good! Maybe we are going to have a good day today. He kept up with all the talking as we went over to visit with our friends and their (non-spectrum) kids. Lots to say, a bit pinchy and pushy, but had a lot of fun and managed himself pretty well all things considered. Ate his lunch. Oh yeah, we are definitely having a good day. Water play – the kids love it cos it’s fun and I love it cos it totally wears them out. An hour or so of running around naked in the dappled sunlight on a warm summer afternoon – happy boy.

Got home after picking up a bargain tray of organic mangoes (L’s favourite new food). Some quiet play, ate some dinner, bath, cleaned teeth and off to bed, all relatively painless. As we are lying on the bed and I’m doing my best NOT to fall asleep, L starts to talk to me.

Him: ‘L a good boy’

Me: ‘Yes darling, you were a very good boy today’

Him: ‘Not naughty’

Me: ‘No, you were good! You had fun with your friends didn’t you’

Him: ‘Darling mummy’

Me: ‘Darling L’

Him: asleep

Me: deep breath – we just had our first real conversation