Catch Me If You Can

Another year has ticked over for my boy. This week he had his 7th birthday.

birthday candles

Yes, he’s still irresistibly drawn to heat & fire.

It’s been a big, big year and he’s come a long, long way. Today (after a bit of coaching) he was able to answer the question – whose birthday is it today? with ‘It’s MY birthday!’ Now to most people, this is not that amazing, but for my little darling…well, let’s break it down a little.

  • He was able to remember and respond consistently with an appropriate answer to the question
  • He is using pronouns – he can talk about himself from his own perspective, not it the third person (this is very new for him)
  • He was able to share his birthday with others (cup cakes at vacation care and later on at home with the grandparents)

In the last year his language & communication has taken a quantum leap. So much so that he took out the literacy & communication prize at his end of year school celebrations for the junior school. It doesn’t seem so long ago when I was not sure if he would ever become verbal. I don’t really care that he won a prize but the acknowledgement of the enormous effort he has put in is incredibly heartwarming. Mind you, he is still doing a LOT of screaming/noisemaking, but at least now, I can ask him to use words or tell him to go outside & annoy the neighbours and he may (or may not!) chose to follow my directions!

This year he has grown like a weed, eaten like a horse, stayed skinny as a rake. He’s lost teeth and made & friends. He’s had lots of fun and has also faced lots of challenges. He started reading phone books (I may be wrong, but he can’t read yet, he just really seems to like the look of tiny little print/text). We’ve also tried some medications but not found anything that actually helps him. He now has a total of four diagnoses (not that I’m counting!).

He has continued to explore and develop a love for music (this makes me so happy!) – yesterday he dragged the old house guitar around with him everywhere. When I played some chords for him – HE wanted to do the strumming and HE chose the song, by singing the words. I had never really heard him sing before, so this was a complete revelation for me. He’s definitely not one of those kids who has an extraordinary talent, but he has a real & genuine interest and that is a beautiful thing.

He’s picky about the music he listens to and he has an evolving preferred style – lyrical & emotive. He likes a variety of styles including early Elvis, Portuguese fado, romantic classical and believe it or not, kd lang. If I put some music on, he takes over and changes it to something HE likes. He knows the albums he likes and goes straight to the tracks he likes, then we listen to them on repeat, repeat, repeat…. He didn’t like the change to the new IOS because he wasn’t able to find his songs in the same way that he had been doing previously. Now, just to put that in perspective, this time last year he didn’t even want to touch the ipad.

He also has a developing interest in logos. His favourite is Target. He checks all his clothing labels and is very pleased indeed if they are from Target.

So my boy, happy birthday to you. This year we are learning about backyard basketball!

I love you.

Here’s your 20 questions and a photo that sums up that last seven years.

On Your 7th Birthday 2014

1. What is your favorite toy? Ball
2. Who is your favorite character? Peppa Pig
3. What is your favorite TV show? Waybaloo
4. What is your favorite fruit? Banana
5. What is your favorite lunch? Baked Beans
6. What makes you laugh? Tickles, being naughty
7. What is your favorite game? Chasey/running
8. What is your favorite snack? yoghurt
9. What is your favorite animal? Dogs
10. What is your favorite song?  Jericho (kd Lang)
11. What is your favorite book? DOGS (birthday pressie)
12. Who is your best friend? Madison & Ahmed
13. What is your favorite treat? milkshake
14. What is your favorite outside activity? Chasing waves at the beach
15. Where do you like to go for a holiday? Beach
16. What is your favorite drink? Ginger Beer or Cup of Tea
17. What is your favorite take away food? Don’t care
18. What do you like to have in bed with you at night? ribbon
19. What is your favorite breakfast? Pancakes/French toast with maple syrup, a mashed banana & a cup of tea
20. What do you want for dinner on your birthday? lemonade (sad but true)
photo by Carly Cain

photo by Carly Cain

Advertisements

TGIF

On Fridays my boy gets to go horse riding. He loves it. He looks forward to it and talks about during the week. He does it through his school (another reason to love this school).
It is an incredibly calm and happy boy who comes home to me on Friday afternoon. Less screaming & noise making, less stimming, more language, more constructive play, sweeter interaction with his brothers, and lots more affection with me.
How good is that? Equine therapy totally rocks! TGIF!!

20130419-223838.jpg

For Your Listening Pleasure

A photo a day in April for autism acceptance:

It’s easy enough to read about some of what happens in our day to day lives. I’ve been telling you about the noisemaking my little guy likes to engage in, but it’s not the same as experiencing it. So here…for your listening pleasure, is what I listen to day in, day out. At the  moment.

I say at the moment, because I am hoping that this is a ‘phase’. I know he gets a lot of sensory input from making all this noise (me too!!), but it does sound like he’s being hung, drawn & quartered when really, he’s just sitting there enjoying himself.

I have also been telling you that along with the screaming, he has been doing some great talking. During the last few months he has clicked over from being essentially non-verbal, to being verbal. Which is like, you know…a miracle!! So here he is, just a few minutes later.

Now before you start telling me how cruel I am, in this instance I’ve used his ribbon to encourage him in his talking. There are very few things that really motivate my little boy, but his ribbon most definitely does. So I’ve extended the situation to give him more opportunity to use all this beautiful language he is developing. Why the screaming and talking are going hand in hand? I wish I knew. (any suggestions gratefully received).

And last of all, here is our photo for the day. It’s something he did at school. I like it! It’s up on his wall in his bedroom gallery – laminated!

20130418-215922.jpg

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!

I Am Living With Yoko Ono

Not really. But I might as well be. Seriously, she does a pretty good version of what I have going on from about 5am – 7pm day in, day out.

My darling 6yo has become a noisemaking machine and it’s doing my head in.

You can take it for an hour or so. But as the day rolls on, the volume goes up, the excitement levels escalate. The quite acceptable, gregorian chant-like droning becomes screaching. My one remaining nerve just got squawked into oblivion and … I’ve lost it, again.

It’s stimming. Noisy stimming. The ribbon is flapping and flicking. He’s jumping around like he’s on fire with those whole body Peter Garrett dance moves.

Yep – Yoko Ono + Peter Garrett = my life.

Meanwhile, I’m trying to go to my happy place where sound cannot hurt me. I’m breathing deeply, I’m staring off into the distance, transporting my tired, dehydrated, overworked brain to quieter times.

Image

But then I snap back to reality, and the boy is happily slurping down the dregs from that double shot espresso I made for myself this morning. Hmmm. There’s something about the smell of coffee that speaks to my sweet boy. At least he is quiet for a moment.

Well. Autism mums are nothing if not lateral thinkers, especially when feeling slightly de-railed. So my short term solution is –

Image

I would fill my ears with cement but then I couldn’t hear all the fabulous language he is coming out with in between all the horrendous noise. I’ve waited years to hears these words, these phrases. They are sweet little drops of heaven in between the devilish cacophonic soundtrack.

Trevor

N: Trevor’s got a bike! Trevor’s got a big bike. Trevor’s bike is noisy! Where’s Trevor?

Me: He’s probably at work

N: Trevor’s at work, he’s working!

Me: Yep, Trevor’s working.

N: Trevor’s got a digger! Trevor dug a hole! He dug it! He dug a big hole!

Me: Yes! He did!

N: Where’s Aaron? (Trevor’s son)

Me: He’s out and about on his push bike.

N: Aaron’s got a bike! He’s got a push bike! Trevor’s got a motorbike and a truck!

Me: Yes! Trevor’s got a truck. It’s a black truck.

N: Trevor’s truck is black! Where is it?

Me: He drove it to work.

N: Trevor drove his truck to work! He didn’t ride his bike to work. Nooooo! He drove his truck!

Trevor is N’s very favourite topic of conversation. Trevor is our neighbour.

N is 2 (and a half). He could only just say about 12 words at Christmas time. He’s a bit of an anxious child, but developmentally on track. But seriously folks, he could talk about Trevor ALL DAY! We do talk about him at least three or four times a day.

Trevor is a nice guy (luckily). He looks like a lot of middle aged bikers – hair cut short, beard long. He’s got a man cave happening under his house, where he spends most of his time. He rides a Harley.

For a little boy being raised by a single mother, there’s a world of intrigue just over the fence. It’s half fascinating, half terrifying. Trevor will often stop to have a chat and that’s when N’s constant chatter stops dead. He’s got nothing to say to Trevor.

So we have become motorbikespotters. On our walks, we keep a constant look out for any bikes that might go past us. We point, we cheer, we clap with the excitement of another bike passing us. We really hit the jackpot today when a policeman on a motorbike rode right past us as we were waiting to cross the road and…waved at us! Oh boy!

It’s a great way to encourage him in so many ways – language, friendships, shared interests, walking and more! Plus, I think Trevor gets a kick out of being such an important part of N’s world.

 

Repeat, Repeat, Repeat etc.

Day 14: Autism Awareness Blogathon  (and what would have been my grandmother’s 110th birthday)

My boy has been very slow to talk. He understands a lot more than he can say and the words are coming along but it can be very hard to understand what he does say.

In 2010 when he had just turned three this was the list of words he could say and understand:

  1. hello
  2. bye bye see ya (said all together)
  3. up
  4. down
  5. shut the door (said all together)
  6. one two three four five (said all together)
  7. go
  8. stop
  9. more
  10. mum
  11. no
  12. all gone
  13. ta/thank you
  14. lie down
  15. sit down

This was after I had completed two Hanan training courses: It Takes Two To Talk and More Than Words (which were fantastic) and had been working with a speechie on techniques to help support his language development for a year.

I kept adding to this list as his vocab expanded. There was never going to be a big language explosion with him, just slow progress. These days I’ve got no idea how many words he can say and/or understand – a lot more than 15.

I’d heard about echolalia – where they repeat what has just been said, or a phrase that they enjoy the cadence of or quotes from movies or books etc. They are echoing what has been said word for word. I would have been thrilled with an echo back then. I remember working incredibly hard for a few months to get him to say ‘more’, but L would just gaze back at me, smile and wait to be given more. We got there in the end though.

So now, as you may have guessed, he is echolalic (good word hey?). His version is to say what has just been said (no movie quotes etc). He doesn’t speak particularly clearly and tends to run his words together. It’s as if he likes the melody of the sentence, not the individual words. He does understand the meaning of what has been said, but when he echos, it’s not so that he can process the message. He’ll say it over and over again and if it’s a question he’ll add his answer.

‘Do you want a cup of tea?’ I ask him – ‘doyouwantacupoftea ok’ then repeat, repeat, repeat.

This slideshow requires JavaScript.

This could potentially drive you insane. As it happens many, many times a day. But last year at the annual foster carer’s conference, the key note speaker was a compelling and charismatic woman called Robyn Moore and she makes a difference to my life every day.

Robyn is, amongst many things, the national patron of the Make A Wish Foundation here in Australia. But it wasn’t her work with children that made the impact on me that day. It was the story she told about her mother.

Her mother had Alzheimer’s and lived with Robyn’s family until she died. Living with Alzheimer’s can destroy family relationships as personalities change, as memories dissipate into thin air and the same question gets asked many, many times. So Robyn knew she would need to find a way to ensure that she could continue to feel the love for her mother that she had always had.

She came up with the ‘First Time’ technique. The idea is that when your darling mother (or son) asks you a question, that you answer it as if it was the first time they had asked it. You answer it with love in your voice.

It’s amazing how this technique has helped me. I find that my frustration levels decreased significantly. He can ask me if I want a cup of tea till he’s blue in the face and I can answer with love.

I don’t have superhuman patience, I can definitely lose it when I have a tough day, but thinking about L’s language, the daily challenges he has, it’s really the least I can do to have a compassionate and loving response.

I Love You

Day 10: Autism Awareness Blogathon

A few years ago I realised that unless I taught my boy to say ‘I love you’, that he may never say it spontaneously. Of course I told him that I loved HIM many times, every day. But words don’t come easy to my little boy, so there was never a response to those three special words.

image credit: ilovedoodle.com

Rather than insist that he respond in kind every time I said it, I made it a part of our goodnight ritual. So after cuddles and kisses and settling into bed I would say ‘night night darling’ and ask him to say ‘night night mummy’ back to me. Then I would say ‘I love you’ and ask him to say ‘I love you’ in response.

It’s a done deal these days, I don’t have to ask any more.  He knows how the script goes. He knows that those sounds and words are what we say every night. It’s the last thing we say to each other.

And isn’t that autism in a nutshell? It’s an important social and emotional exchange. One we all need and deserve to participate in. The feelings are there, no question, but for a child with autism, it needs to be unravelled to its core components and taught step by step. They get there eventually, but it doesn’t come naturally.

Would it kill me to never hear those words? No, because I know he loves me and he knows I love him. Will it help him to be able to say those words and express those feelings? Yes. Will it help me and the other people he loves to hear them? Yes with cherries on top.

image credit: the twineryblog.com

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.