April = Autism Acceptance

It’s that time of the year again. Time to break out all those posts I’ve been working on in my head and actually write them down to share the with you. For the last few years I’ve done what I call my Autism Blogathon – a blog a day for the month. Brace yourselves for the onslaught!

Day One

It’s Tuesday. That means we’ve been up busting a move to get fed, dressed and out the door. I scoot through the morning traffic like a rally driver to arrive on time at L’s speech therapy appointment. Just made it today. I just make it every week.

Speech therapy has been a part of our weekly schedule for many years now. It’s also part of our daily lives as most of the therapy is done at home. Our lovely speechie Judith sets the tasks that we work on throughout the week. Over the years I think I may now have done almost as much study as her! I’ve done courses, learnt Makaton (a sign language), I’ve read and practised. I’ve repeated and slowed my speaking style. I know what a preposition is. I’ve perfected simple instructions. I’ve left space for processing and response. Years and years of it. Thousands and thousands of dollars.

It’s paying off.

It’s so exciting to hear the new sentences, the questions and the answers. L is following directions (miracle!! right there!!!). I can negotiate with him. I can help to calm him with words. He can wait, knowing what is coming next. We no longer live in the world where it’s instant gratification or the sky is falling. It’s a wonderful thing.

I was never certain that my boy would learn to talk or choose to use the spoken word as his form of communication. He is learning and he does choose. Every day.

20140401-081950.jpg

Toys and Stuff

I have just hauled a massive bag of toys into my bedroom (home of many random things). I’ve done this to reduce the madness with all the gifts that Christmas brings.
So we are down to a low-ish level of stuff without depriving the three boys of things to do and read and play with.
Because, in another corner of the room, not very far away is a massive great pile of presents. They are starting to tower over the tiny Christmas tree I’ve been using for years.
I’m not a big traditionalist when it comes to Christmas. We most certainly celebrate it and enjoy the time with friends and family but our Christmas is a little different to most.
When possible I try to help the kids have time with their families on or very close to Christmas Day. That might mean meeting in a park for a play on Christmas morning, or packing them up for a sleepover on Christmas Eve. In this way their families get to have this special time together.
It means something to me to be able to help make that happen. It also means that Christmas Day is a little different as I don’t always get to gather my little boys together to share this day. This year the two older boys will be off with their families and I won’t see them till Boxing Day. Other members of my family will not be around this year so me and the baby are heading down to Byron Bay to spend the day with friends who live right near the beach. We will be having a lovely time with swims, playing on the sand, some great summery food and wonderful friends.
Have a great Christmas everyone.

20121221-133818.jpg

20121221-133838.jpg

Mothering Day

Mother’s Day is almost upon us here in Australia. My mother’s day is slightly different to the one most mummies have. It involves cards and presents for the three birth mothers and one grandmother of my kids, plus something for my own mother.

is this what it’s all about?

Most people don’t know this, but it’s really hard to find the right kind of card for a birth mum. All the messages just don’t suit the situation, so I try to stick to the basics – I LOVE YOU – seems to fit the bill the best. That’s because it’s true, even though the kids don’t really know it at this point. It’s also something these mums need to hear.

don’t sit on her!

I get to care for and love these little honeys every day, I get to feel their love, I get their kisses, I get to see them reach their milestones and day by day, to grow up. The least I can do is to be generous to their bio mums on this day.

So I’ve sent off a mothers day package to one mum who is in the big house with lots of photos and a card. I’m taking one of them to see his mum at her detox centre in the morning. I hope this will give her the strength and courage she needs to continue. And my third will be sleeping over at his grandparents and his mum will see him while he is there.

Tomorrow morning I won’t be sad because no one is letting me sleep in or making me breakfast in bed. I’m grateful. I’m thankful. I’m honoured to be a mother to these boys.

One of the very early posts I wrote when I started this blog was called I Can Live With That and this is what I wrote back then:

My 4 year old has autism. He came into my care when he was seven weeks old and the first thing we did together was go to the ophthalmologist where I was told he was totally blind.

We’ve been through a lot together and every Mother’s Day (all four of them), even though he’s supposed to be making me breakfast in bed and bringing me presents that he made himself (yeah, yeah yeah, I know…he’s 4!), I thank him and give him extra special hugs and kisses, because this little boy has made me a mother. He has done what I couldn’t do myself.

Enjoy your Mothering Day mummies. Thank you boys xxx

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

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).

The Wednesday Girls

Day Five: Autism Awareness Month blogathon

Part Three of my autism mum story. See part one here and part two here

The Wednesday Girls were a group of new mums that I fell in with when L was a few months old. We got together every Wednesday at one of our houses or would go on an outing – swimming, playgrounds, bus rides. The kids had all kinds of fun and we would get to download, debrief, laugh, cry and work our way into some really solid friendships, sealed with the fire of a shared journey.

There were times when I felt like these women were saving me from drowning. None of us were perfect mothers by any stretch, not that there is such a beast. Some had been through fertility issues, others had horrible gestational conditions but here we were with these beautiful children. And over the years, the number of kids has grown quite considerably.

L was the oldest of this crop but only by a few weeks. So when the other kids would reach a milestone before him I was aware but not overly concerned as I know that every child has their own schedule to follow. The regular professional support I got through the Narby playgroup was reassuring. The therapists who see so many children come through the school, advised patience. It was going to take a little longer for my boy.

I do remember seeing one of the boys quickly moving through the crawling, pulling himself up to stand and then walking stages. I said to his mum Abby – your boy is amazing! He is so advanced! I can laugh now as I think back to this comment. Because of course, he was just totally normal, doing what most kids do within a month or two of each other.

Gradually, all the kids in the Wednesday Girls playgroup overtook my little darling. He wore the knees out of a lot of pants crawling for a full 12 months. I eventually had to get him some knee pads as he ended up with big callouses on his poor little knees. Still he was a happy, laughing boy with an engaging personality. Because of that the Wednesday Girls kids have become a wonderful neurotypical friendship group for L.

Wednesday Girls kids

It was around this time that his obsession with string began. He would gravitate towards anything with a string, anything that looked like or resembled a string. He had a particular way that he liked to fold the string and would do this over and over. My sister in law had given him a beautiful toy that was a block of wood, painted yellow and shaped like a wedge of swiss cheese. Attached to the cheese by a string was a little mouse. You could thread the mouse through the holes in the cheese. Not my boy! He got very attached to it and wanted that stringy mouse in his hand all the time. So as he would crawl along, the wooden cheese would swing through the air and thump down beside his hand. That was the start of me modifying toys for him. Of course I detached the string from the cheese. Oh happy day! That little mouse went everywhere in that pudgy little hand of his. Sometimes, being an extremely oral boy, he would pop that little mouse into his mouth to the shock and horror of some, who thought it may have been an actual mouse.

I had gone back to part time work as an arts bureaucrat. As L got a little older and it became obvious that I needed to give him as much as I could during these early years. I was juggling the work commitments, where the demands on the limited time I was in the office became increasingly overwhelming and a little boy who needed everything I could give him. Priorities!

I arranged to have a year of leave without pay.I knew that it would make a big difference to both of us. So it was with enormous relief that I was able to stay at home and start ramping up on L’s development.

I’ve said in other posts that I am the kind of person who likes to push the envelope a bit. I’m never shy to get in there when something needs doing. So, true to form I put my hand up to care for another child during this time.

Just before L was about to turn one, I had provided some respite care for a little baby girl who was waiting for all the red tape of the adoption process to be finalised. It was only for a few weeks, but I just loved doing this. So the week after I finished work, as I sat there twiddling my thumbs (!!) I took a call asking if I would be willing to care for a ‘pre-adoptive’ baby. She’d only just been born. She was a few weeks premature and was up in the hospital waiting for her placement with a foster carer while the adoption team did their thing.

I guess you know by now how I responded to this request. I was up at the hospital lickety split. It took about another 10 days before she was able to come home, but I was up there every day, giving her lots of love, feeding her, bathing her and giving Baby E as much as I could.

Some people questioned me taking on another child when L had a lot of special needs. Being one of five children myself, I felt that the benefits of having siblings far outweighed any possible negatives. I still think that I made the right call there. It’s why I have three kids in my care right now. But back to the topic…

At this point L was almost two. We had a wonderful Christmas that year in our steamy sub-tropic city. Lots of water play and backyard fun, visitors and family.

Assuming the position, post Christmas lunch
my sister and baby E

The new year started off great. L was finally walking and he was on a mission to make up for lost walking time. We walked every day. He refused to go in the pram. He just needed to walk, so we did. Sometimes he’d walk up to 3 kilometres before finally slowing down and stopping. We’d walk right past the playground – not interested. At all. Didn’t want to stop and look at the ducks or the water or the trees or the cars or the flowers or the dogs. He just wanted to walk.

At the Narby playgroup, they were able to access what they called ‘visiting teachers’ who have specialised skills in various areas. They organised for the teacher who specialised in autism to come in and meet L and myself. He wasn’t convinced that L was autistic as he was quite a social boy, especially with adults. But despite this, he was a great support though that year when a few more behaviours emerged and we started down that well trodden path of behaviour management.

I remember saying to one of the therapists in the middle of that year that I was pretty sure that he was on the spectrum. At that point, I had done quite a bit of research and I knew what the indicators were and the criteria was a pretty good match for my boy. Now that he was two & a half plus, the evaluation process could begin and the evidence gathering and doctors appointments became an even bigger part of our routine.

It may sound blasé now, but I didn’t care if he would be diagnosed as autistic or not. I knew that a diagnosis would not change him. He was still my little darling no matter what. I figured that if he did get the diagnosis, then great – we know what we are dealing with and can get on with it. If not, then also great – he’s not autistic, fantastic.

It would take almost a year before a diagnosis would be made.

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.