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.

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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

You Are A Saint

Day 8: Autism Awareness Blogathon

Actually, I’m not. Anyone who knows me, knows that I am most definitely not a saint.

a book I don't have
image credit: Jossey-Bass

From the outside looking in, you may think that I am doing something extraordinary. Actually, I’m not. I’m doing something that lots of people do everyday. It’s called parenting. I’m parenting a few more children than the average bear, but not all at the same time.

I am often asked why I became a foster carer. This is what I tell them:

When I started out as a foster carer I was keen to contribute to my local community. I figured that if I wanted to live in a community that cared about me, then I needed to do something that demonstrated and contributed to the values that are important to me. These days, it’s more about the practical reality of being a foster carer. It’s become part of who I am and how I live and it’s incredibly satisfying despite the challenges.
For those people who think ‘I could never be a foster carer, I’d get too attached to the kids’ I say ask yourself if you’d be willing to care for your brother or sisters children if there was a family crisis? Would you love them despite the hardship of the circumstances? And would you be willing to hand them back to their parents once the crisis was over? Yes, you get attached to these little people who come into your life. You don’t stop loving them because they are no longer in your care. It’s good to know that someone is able to help when there is a need and I am happy to be able to be that person when it comes to the kids in my community.

When I became a foster carer, I knew that there was a likelihood that some, if not all the kids would have ‘special needs’ – you don’t end up in foster care for nothing. But like most parents, having a child with a disability is not usually on your wishlist.

I have travelled a similar road to the one that birth parents do when they learn that their child has a disability – overwhelming love, heartbreak, fear, hope, acceptance.

I also feel lucky. I’m lucky to have these kids in my life. They give me so much that I also tell people that I get far more from fostering than the kids get from me. Of course, I give them everything I can, but they give me so much more.

So I’m actually a selfish, lucky and thankful parent of a child with autism (and a couple of other little darlings as well).

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.

Removing Children

 

This week in Australia, a television program called Insight was screened on one of our free to air channels. Insight has a forum style format where a moderator/journalist directs the discussion of the invited live audience of about 50 people representing a diverse range of opinions and experience. It really is a great program that has been successful now for many years.

The format works well and each week topics relevant to what is happening in our world, our country and our communities are explored in what is usually a compelling and deftly handled conversation.

This week the topic was ‘Removing Children’ The format was changed slightly so that the four special guests were sitting on the podium with the presenter. They were two young adults who had been removed from their families during their childhood, a foster carer and a father (appearing anonymously) whose children had been removed and who had worked successfully to be reunited with them.

Of course this topic is one very close to my heart. So, along with my many foster carer colleagues, child protection workers and the many people who work in support of children and families, we were all glued to the screen. Finally the issue that dominates our personal or working life (or both), our hearts and our homes was being given some air time.

I came away from watching the program feeling quite disappointed. I realise that one hour is simply not enough time to explore such a complex issue in great depth. However there were gaping holes in the discussion that left the television audience no wiser as to the decision making process that leads to removal of children or even the key issues we face as a community when it comes to child protection.

There were no representatives from the ‘Dept’, not a single politician and though there may have been people who work to support families & children in care in the audience, they did not get the opportunity to speak.

The main discussion centered around the young people and their experiences of trauma and abuse from both their birth families and from the system that was supposed to be protecting them. It was painful to see the young woman being questioned when she was not comfortable or equipped. The young man was more worldly and at 30, was older and better able to discuss his experiences.

The dad was brave and honest. His acknowledgement that it was the right thing for the department to remove his kids at that time was telling. The foster carer did not get a chance to say anything of much value, though I’m certain he would have had a lot to say given the appropriate questioning.

I do believe there was enormous value in the discussion that took place. Most people are lucky enough to never need to darken the doorstep of the child protection system. For them, it’s mysterious, dangerous and unspoken. This program did shed some light for those people.

As a foster carer though, this is the world I inhabit. The department may be the ones during urine tests and going to court, but I’m the one (of many) working to help children live through and heal from their trauma, to build positive relationships with their bio families and the important people in their lives, to help mums & dads and extended family learn about good parenting and supporting them in their efforts to reunify.

When that is not an option we are the people in your communities who step up to raise your children, whether it’s for a week end or  a lifetime. Foster carers play a pivotal role in helping our communities. We’re volunteers who live our values out in real time. Kids are the product of our community values, not just of a mother and father. So what is that saying about us as Australians right now? What is that saying about you?

Insight: Removing Kids

2 years

A letter for your 2nd birthday

Dear N,

It was your birthday on the weekend. Another big milestone for you little man. You have been living with me for 18 months now – how lucky am I? At 2 you are a real little character: totally loveable, incredibly good looking, extremely intelligent, super musical and with a sweet and charming personality. What an amazing boy you are!!

You’ve had a very busy weekend. You had a sleep over with your cousins and a lovely birthday cake with them on Saturday (your actual birthday). After that you came back home and then on Sunday afternoon we had a birthday party here with your friends.

You had such a lot of fun even though it was a rainy day. There were 10 kids here all together and you made the most enormous mess. You drank lemonade and ate little sausages with sauce (your favourite!) and then we had the birthday cake. It was a chocolate monkey cake with chocolate doughnut ears and mint pattie eyes. Everyone stood around and sang ‘happy birthday to you’ while you ate the brown m&m nostrils and then they helped you to blow out the two candles.

It was so funny cutting the cake, some kids were saying ‘I want some eye’ or can I have some ear?’ and pretty soon there was just a few crumbs left on the plate.

We gave you a red ukelele for your birthday. You call it your ‘tah’, like guitar only easier to say. You were so happy to get it you sat down and played it for about 20 minutes non-stop – not bad for a 2yo boy! I sent a photo of you playing it to your mum and it made her so happy. You really love music and you are getting more and more interested in singing songs, dancing and playing any instrument you can get your hands on.

You have a few favourite shows. You love the Wiggles and anything they do will keep you entertained. You are just starting to join in and sing some of the songs and do the actions. You also love Fireman Sam. You often come up to me during the day to say ‘Wiggles’ or ‘Sam’ or ‘teeeveeeeee, teeeveeeeeee’ and hand me the remote control. I try to limit how much tv you watch, so we do lots of play downstairs in the garden. You love the sandpit, where there are lots of trucks and things to dig with.

You really love everything to do with cars and transport. Each morning as we wait for L’s school bus to come and pick him up, we all sit on the front step to watch the cars, trucks, bikes and people. Although our street isn’t too busy, we get enough traffic to keep it interesting. You name each vehicle as it goes by.

But your favourite day is rubbish day. When you hear the truck coming we must STOP EVERYTHING and run to the front door to watch the rubbish truck come to empty our bins. We wave at the driver and he waves back at you. We say ‘bye bye rubbish, don’t come back!’

What a wonderful little brother to L and big brother to J you are. They both love you so much. Sometimes L is hard to play with, but you don’t care and you just get in there and make him play with you as much as possible. Even though he often pushes you away, you love to give him a big cuddle and because you are a very clever little guy, you have worked out that if you cuddle him from behind, then he can’t push you away. So smart! You have a fun running game that you play together that involves running, screaming and giggling your heads off from one end of the house to the other. You also love to get in and have a good rough & tumble wrestle. Every, single time – you come out on the losing end. But that doesn’t stop you – oh no!

With little J you are very sweet and gentle. You stop to give him a kiss or to pat him on the head. You also enjoy sitting on him, which J doesn’t like at all, so it’s lucky you don’t do that too often. At the moment you are both enjoying playing in the ball pit. It’s a blow up contraption that holds a whole pile of balls. You guys have so much fun in there chuckling and rolling around, sticking your hand through the holes in the wall.

fun in the ball pit

Well beautiful, happy second birthday. Love you

Brother!

I felt the need to post today because, being February 29, I won’t have the chance to do this for another four years. So here we go.

Today, as I went to pick up baby J from his cot after his afternoon nap, N followed me into the bedroom. When J looked up and saw his (foster) brother through the bars of his cot, he was so thrilled, his smile just burst out of him. They reached out towards each other and touched hands. I smiled and thought, ‘brothers!’

They are not related. They share no genetic code. They are from two very different cultures on opposite sides of the world. But here in my home, they are brothers. In the truest sense of the word. Bound by love.

It’s relatively early days for these two with J only 8 months old and N about to turn 2 (on Saturday). There’s a lot of wrestling and rough and tumble that goes with being brothers. Somehow through all that body contact, that pushing and testing their limits a bond is formed and it is formative.

Together with L, they make up my crew. My noises with dirt on them.

Then I read this beautiful, heartwarming and hopeful post from Try Defying Gravity

I hope you do too.

Here’s to brothers…happy leap year!

three brothers!

Under the Tree

Christmas rolling around again. I’ve been reasonably efficient in present buying this year and have minimised my time in shops by shopping either through N’s child care centre’s fundraising catalogue and also through a little online browsing.  So I thought I’d share some of my fabulous finds.

Fostering babies means that you are responsible for taking photos of them as they grow, keeping all their special little things like id tags from hospital, the outfit they wore home from hospital, any cards or presents they are given and keeping track of all their milestones – just like a regular mother would. However, when it comes to putting it all together in a ‘baby book’ well…I’ve never been able to find a book that really suited their circumstances.

Usually, all you have to do is open the first page and there you find something like – ‘a picture of me inside mummy’s tummy’ or, ‘the day mum & dad discovered I was on my way’. Turn the page and there’s something like ‘My family tree’ …there’s usually way too many unanswered questions for that one. And on it goes. So, no…no baby books for my babies.

Guess what I found?? Oh yes I did! The very clever, sensitive and creative Kate at gadanke makes beautiful handmade journals titled ‘You Are Loved’ and which prompt you to write about so much more than the cold hard facts. So I’ve  got one of these under the tree for J. This will be something he can treasure forever.

Now for that elusive present that you can buy in quantity, not too expensive, unique, somewhat arty and which everyone will have a use for. Problem solved at todryfor . Some of you who read this are getting this present. So shield your eyes, or indulge yourself trying to work out which one I have got for you. No more info – either go to the site and be delighted or don’t. It’s up to you.

That’s it for now. I’m off to a mummy’s night out. Rare, precious.

Take a Walk on the Wild Side

Last weekend I attended the Australian National Foster Carers Conference. I was asked to review one of the workshops I attended for our state magazine. Here’s a snippet from what was a really inspiring weekend.

By Sunday morning all the conference goers were a little tired, especially those who stayed up and danced the night away at the conference dinner. So it was great to walk into a room with a lot of energy in it.

This session was being led by Gregory Nicolau, Director of the Childhood Trauma Group in Melbourne. Gregory has extensive experience in helping children in out of home care and had given the keynote speech on Saturday afternoon. He’d obviously made an impact as the room was full and just kept getting fuller as more & more people turned up to hear him speak again.

This session was about helping carers and their support workers to understand the real message our kids are telling us when they swear and have tantrums, withdraw, lie or use violence. More than that, Gregory planned on sending us home with some skills and ideas that would help us to see past the behaviours through to the hurt child, and to help the child to find new, more effective ways to communicate how they are feeling.

The session was entertaining and gave us a lot to take away and consider. I appreciated that Gregory acknowledged that we had a reasonable working knowledge of kids, brain development and the impact of trauma. He took us on at a higher level and kept us thinking and reflecting on our past and present challenges.

When I go to a workshop I hope to come away with some key piece of information that really resonates with me and my current line up of kids. With this session, it was the idea of ‘credits’. Starting every day with a fresh portion of credit for each child, then giving them more credit for getting out of bed, for eating breakfast and for every time we catch them ‘being good’ or doing something that takes them closer to being a regular kid. Remembering to celebrate and acknowledge the positive steps they make in day to day life – heart medicine (as Robin Moore would say).

I came away feeling like my reserves were a little fuller than they were at the start of the session. Thanks Gregory!

How do you say goodbye #2

Most of the children who come into my home are babies or at least under the age of 5. I have cared for older children, but somehow over the past few years it’s the little ones who keep coming through my front door.

Sometimes these little darlings go back to their birth families, some go to their new families when they are adopted and some stick around. As I write this I have one playing at my feet and one being burped on my lap while we wait for the third to come home from his family visit. I am perfecting the art of one handed typing.

Saying goodbye is such a personal process. In the weeks, days or hours before one of my kids moves on, I start my goodbye by writing them a letter. In this letter I try to tell them a bit about the time they have spent with me, some of their experiences and milestones. I like to tell them a little about their personality traits and my hopes for their future. Mostly I want them to know how loved and cherished they were.

If they were newborn when they came to me, then I like to tell them some of the details of when they were still in hospital and when they came home. Of course they will have either a lifebook or journal that goes with them, but these letters are something very personal from me to them. I hope I can help them to fill in a little but important piece of a big jigsaw.

For some children who are being adopted, they won’t get to read this letter until they are 18 years of age and able to request their file. I try to imagine how it might be for them to get this little window into their very early lives. I know that I am the only one who can tell them about this time in their lives, so I try to honour that precious role.

On their last morning with me I always take a photo of us together. The protocol for children being adopted is that the foster carer is not in any photos that go with the child. So this photo is for me and for them but they won’t get to see it until they can access their file.

I am usually able to hold onto my emotions right up until the point where they are heading off for the last time. If I can, I like to carry them out to the car, strap them into their seat, tell them I love them and give them a final kiss goodbye. After that, I’m a mess and the best thing that can happen is for the parents or workers to drive off into the sunset and leave me to shed some tears for that little piece of humanity who needed me for a little while.

If I can, I’ll take myself off to a sad movie and sit there in the dark shedding a quiet tear. It’s remarkably therapeutic. After all the build up and the final farewell it’s great to have a moment to myself with a wonderful distraction (I never get to see films these days!!).

Life goes on and I try to get on and do things I can’t normally do when I have a bubba in tow – there’s always plenty of jobs to do around my house & garden. It gives me the change and purpose I need and before I know it, the phone is ringing and someone else is on their way to me.