Ayla's 50 metre Challenge

Here in Canberra, our family is part of a group called Friends of Brain Injured Children (FBIC). They are a great group that gives its member access to small amounts of funding throughout the year to spend on therapies. On the weekend FBIC ran their first ever 'Riverwalk' ...sounds odd, I know as Canberra doesn't really have a river running through it. Riverwalk began in Queensland some years ago and is an opportunity for the parents of brain injured children to raise funds for their kid's therapies.

So this year FBIC in Canberra decided to join in the fun by hosting our first ever 'Riverwalk' by Lake Burley Griffin. Ayla took part in this and we added a little twist to make it more interesting. We gave Ayla the challenge of 'stepping' 50m in her walker with sponsors offering to give her x amount of dollars per metre that she stepped and a bonus if she made the 50 metres. And she gave it a red hot go.

Ayla has had a lot more challenges in the last few weeks than has been usual and this really didn't help her cause. We've had medication changes of late that have caused more seizures, bigger seizures, emotional outbursts, tiredness and big change in her ability to step. Her little legs have become quite stiff and she just doesn't want to step at all whereas before she was powering along. Don't get me started on the meds ....I'm less than impressed right now.

The other challenge we had was that Mummy in her very pregnant state has a mushy brain and left her walker at school, which is a little difficult to retrieve on the weekend :(.

So we made do with what we had (our wheelie stool, our arms and our singing) to get her moving as best she could for her challenge.



You'll see in the video that it really was hard work for her (you should have seen her stepping a few weeks ago!!). She took several breaks in Daddy's arms and eventually at a whopping 35 metres, she was just too tired and sat down on the ground. She didn't quite make the 50 metres but she pushed so hard that I'm not going to take the 35 metres away from her. We were so proud of her!

Ayla-ism

Hold on to your hats....or make a cuppa.....it's a long one!

When you get to the September school holidays, you realise that the year is beginning to draw to a close. As a child, that was hugely exciting. School holidays for a whole 6 weeks, a seemingly endless summer, the beach, christmas, parties, bbq's, friends, family, vacations, and then the excitement of starting a whole new school year. Another birthday, another year older.

Even as an adult, this time of year can become exciting as we plan our activities for Christmas and visits with family and friends. But this year I'm finding that the reminder of the year drawing to a close is bringing with it an anxiety. For the past 5 years I have been merrily 'putting off' making too many decisions about Ayla's schooling life. Yes, I had her enrolled in Silkwood School but No, I didn't really think too hard about what that would like or how that would work or what that would mean or how we would fit Ayla into this schooling mould.

Ayla's condition is, at best, complicated. And before you rush into thinking that I'm just another parent who believes her child to be 'special' or 'different' to other kids with disabilities and therefore requires more....more 'special' or more 'different', let me explain that....as best I can.

Ok....where to start. Ayla has a condition called Bilateral Frontal Polymicrogyria. She kinda fits under the Cerebral Palsy spectrum.....but doesn't have CP. The 'professionals' in Ayla's life suspect she has Cortical Visual Disorder (Steven and I are pretty convinced too)....but she's not blind or sight impaired. Ayla is non-verbal.....but it's not a language disorder that improves with Speech Therapy and an augmentative communication device is great in theory but until Ayla reaches a stage where she learns to point and/or make choices, she may not fit this mould either. Ayla has a mobility disorder....but a wheelchair is not the answer. She wants to be on the ground, rolling and dragging herself....there aren't too many (read: NONE) Learning Support Assistants who would be prepared or "allowed" to lift Ayla in and out of her chair all day at school. Trust me, even in her stroller, she only lasts maybe 30 minutes before she's screeching to get out! And, her condition (being categorised as 'low tone' or 'floppy', mean that just sitting up and playing quietly is incredibly exhausting......I don't know of any schools that incorporate sleep time into their schedule either.

Anyway, I'm starting to digress...... Amongst all of the 'professionals' that have come and gone from Ayla's life, there has been one comment that has been common to all...."Gee, she's really hard to assess, isn't she?". This comment was really hit home to us when our Neurologist mentioned that with most children he sees, he could make a very accurate guestimate of which part of the child's brain was affected just by observing the child and talking to the parents. He was genuinely stumped when he met Ayla. He suggested that she seemed to be at a different level of development (physical, emotional and intellectual) for different parts of the brain. So YES, is she is rather complicated.

Steven and I have had Ayla in our hearts and home for the past 5 years. We know her better than anyone. You could say we are experts in Ayla-ism. Until I start to agonise about schooling. There are schooling protocols in place for children with learning difficulties, schooling protocols for Autism Spectrum Disorders, schooling protocols for mobility impairments, schooling protocols and even just 'schools' for the deaf and the blind......there is no school for Ayla-ism. And when you look at it....No, there isn't a school for Tayla-ism or Kaelen-ism or Asha-ism or even Poppy-ism.....but all of these kids (yes, these are real kids that I know) they are able to be 'catered for' in the class room. Although Steven and I are experts in Ayla-ism, we couldn't honestly tell you where Ayla is at cognitively/intellectually. We don't know whether we can teach her to read....Hell, we don't even know if she will be able to use a communication device! I could go on and on here as there is so much whirling around in my head but it might be best to cut it off here and tell you what I do know.

I do know.....that 'Academia' is not at the top of my list of the most important things for Ayla. That's not to say that I don't think she's capable. I just think that there are things like dressing herself, feeding herself, communicating, toiletting herself etc that are waaaaaay more important at this point in time. Academics will be a bonus.

I do know.....that as 'Specialist' schooling currently stands in the ACT, that's NOT for Ayla! Ayla doesn't need babysitting and she doesn't need to be moved from one 'Sensory Station' to the next. That doesn't teach her how to use her body, it doesn't teach her life skills and it doesn't teach her how to communicate. Our meetings begin next month in regards to starting a Conductive Ed class at her school....so we'll see what happens there.

I do know.....that Ayla needs at least 2 days per week outside of the home and playing with other kids, both neurotypical and non-neurotypical. I also know that currently 2.5 days per week outside of the home is all she can really cope with at the moment. She begs me for sleep in the middle of EVERY day and with her current 2.5 days, there are no sleeps or rest time. Ever since our move, Ayla has been very tired and run-down and has been experiencing constant cold-sores EVERY week. She needs her rest just to be healthy.

I do know.....that I need Ayla to have 2 days per week outside of the home. Call it sanity time, time out, time to go to work....call it whatever you want, I just call it completely necessary!

I do know......that I can't change every school we go to to suit Ayla's multi-dimensional and complicated needs. And what about a school that fits in with the educational philosophies of her parents?

I do know what I want her 'learning' to look like.......life skills (feeding, dressing, toiletting, communicating); time for her ABR therapy; other 'life skills' like growing food and cooking, good nutrition and wellness; respect for herself, for others, for Mother Nature and the Earth; music and singing; celebrations (of the seasons, family and friends); healthy doses of Nature as opposed to dead grass and softfall in playgrounds that don't cater for her; and I want to know that 'inclusion' doesn't just mean that she's wheeled to a location in the playground where she can 'watch' the other kids play.

If you look at just one school or schooling model....this may be a little too much to ask. So, I'm not. I'm not looking at just one. Somehow I'm going to CREATE a schooling model that fits Ayla. One that isn't completely set in stone and can be changed, tweaked and moulded to fit Ayla. A model that isn't one size fits some, and all the others be damned.

I'm exploring. Conductive Education, Montessori, Steiner, Homeschooling, Mainstream schooling.....I'm looking at them all and SOMEHOW I will create a schooling model called Ayla-ism.

A Magical Winter Wonderland

There is something so magical about snow. The silent drift of snow falling to the ground, snow drifts perched precariously in the branches of trees and shrubs, that pristine cover of white that's so sparkly and fresh, the squeals of children and adults alike as they zip down the slopes, rosy cheeks, steamy breath, drippy noses.....and then there's the sound of Ayla, who didn't really enjoy the snow as much as we had hoped:) LOL! It's kind of understandable.....she didn't have the best start.



Within 20 minutes of arriving, I had already sat her on the toboggan, up against a wall so that I could fix up the boot that kept falling of her foot......enter that 'magical' snow drift that was clinging 'precariously' to the roof! Yep.....PLONK! Straight on her head! The look of shock on her face was priceless and it probably didn't help that Steven and I cracked up laughing. Add to that the conditions. I put it out to the universe that I wanted snow to be actually falling so that Ayla could experience it all....and fall it did....in blizzard fashion :). It didn't stop snowing all day and was the heaviest that I had experienced (apparently they have a blizzard up there today) and the breeze was quite strong too, so that the snow was somewhat 'whipped' into your face and eyes. We didn't have goggles and they were the sort of conditions where you really did need a ski mask and none of us had one.



But we soldiered on and went for a few runs on the toboggan. At this stage Ayla still wasn't enjoying herself so we decided to go inside and have lunch. According to Ayla, lunch and the DVDs on the way home were the best part of the day! It wasn't all bad though. We dressed her up again after lunch, grabbed that toboggan, avoided the snow drifts on the roof and spent the best part of 90 mins going up and down the slope. And we even saw her crack a smile a few times on the way down the hill.....and when you think about it, that was exactly the reason we took her!




It was absolutely worth the 6 hours of driving for the day and we plan to do it again next year for a few days. We'll need babysitters though......anyone??? Mum? Dad?? :) There is no way that Steven and I could visit the snow again and not get on a board.....it was a little torturous to watch the boarders and then walk away from them at the end of the day.

So, we know what we need to take to make it more enjoyable for Ayla next time. We know to stay away from the outer walls of buildings. And we know that Ayla is going to learn to LOVE the snow.....cos her Mummy and Daddy do! For me, the snow will never lose its MAGIC.

Chocolate for Dinner

Chocolate for dinner....and it's not even good.

I feel like I have just spent one and half hours somewhere back in my past....about 4 years ago. A time when Ayla was around 7 weeks old and used to cry and scream for hours every night. Seemingly for no reason. She didn't have any pain that we could see. She had a full tummy, a clean nappy and more love than she possibly could ever conceive of having but still, every night from about 4 in the afternoon she would kick, scream, cry, scratch and just generally thrash around for hours, until finally she fell asleep. I remember my midwife giving me this article by Aletha Solter to read around this time and it helped a lot. Especially the bit about not leaving a baby to cry alone. Just being there while she cried.

Tonight, Ayla took me right back there. The kicking, screaming, crying, scratching, thrashing and now add to that biting and pulling hair. All I could do was lay on the bed next to her. It's been a very sleepless few days in Sydney for our ABR workshop. She's been waking every 15 minutes, all night for 2 nights now and this afternoon I could feel myself on a knife edge....the very same knife edge I found myself on daily until Ayla starting sleeping through the night about 3 years ago.

At first I felt angry and frustrated at her response to bedtime. Then I started to cry because I just couldn't believe how far past exhaustion I was. And then Aletha's article popped up like a vision before my eyes, as a reminder of what Ayla needed from me tonight. Just to be there and listen until she had finished.

Aletha says,

Infants are extremely vulnerable, and have a considerable amount of emotional pain resulting from an accumulation of stressful experiences. Distress can be caused by a traumatic birth or difficulties after birth. Babies experience confusion as they attempt to understand the world, and they are easily frightened and overstimulated. In addition, they feel frustrated as they attempt to learn new skills and communicate. All of these result in emotional pain that is stored in the body.

Ayla is a long way from being an infant these days......or is she? Her inability to express her emotions and needs verbally would definitely leave her feeling vulnerable. And the amount of travelling around that we have done in the past 3 weeks has quite possibly left her feeling frightened and overstimulated .....frustrated again. Tonight was a MASSIVE release of pent up emotions lasting one and a half hours. I felt totally helpless as I lay there beside her while she, somewhat, took it out on me before finally falling into an exhausted (if restless) sleep. We can't wait to get home and stay there..... at least for a little while. So, if you don't see us out and about, don't panic, we're just getting ourselves grounded again.

But in the meantime................ it's chocolate for dinner.

Toilet Training Record

Yay!!! We broke a record today! Three Wee's and Two Poo's in the potty...Woo hoo!

It's all in the timing at the moment but I am guessing that's what it is all about when you first start...and if it's not, then don't tell me! Don't burst my bubble. I would much rather remain totally ignorant :)

I must say though, that both Steven and I have witnessed Ayla determinedly rolling toward the potty, placed her on it and she has done a wee....so maybe she is trying to tell us sometimes. There have also been plenty of times that she has rolled to the potty and there has been no wee.....Alright! I'm imagining it....sigh

Yay Us!

So we are back from our camping trip.....and have brought all the holiday lethargy back with us. What we haven't brought back is the tummy bugs and flus! Yay Us!!! All healthy again here. On the flip side of that, my laundry looks far worse than the photo in the last post. We had fantastic weather for camping but as we were driving away from our campsite, the rain set in and the further south we drove, the heavier the rain came down. So I have been gradually trying to work through the washing pile from camping in wet weather....as you can probably imagine, it's not moving very quickly.

Anyways...I have stories and photos to share.

Before we left for our trip, Ayla finally realised she could reach through the playpen 'protecting' our Christmas Tree and pull off Baubles....and tinsel, and shred the fake branches, and pull the tree over.....Oh and look, Mummy put that Bauble back for me to rip off again...Cool. Yep, lots of fun and games to be had there. Trust me, that tree is not staying up til New Year's Day. It comes down tomorrow!



We have had 7 days of camping in a gorgeous spot at Burrum Heads. It's a tiny little seaside town that is supposedly part of Hervey Bay. The park was a bit neglected but we managed to snag some pretty reasonable camping spots and it was just a short walk across a road to go swimming. And yes, swimming made up the majority of our day. Ayla could see the water from our tent door and while I was tidying each morning she would sit at the door giving her very own little version of a sign for swimming and then squeal and giggle until we put our swimmies on. Our days went something like this.....wake up, have breakfast, go for a swim. Come back, tidy up, have morning tea, go for a swim. Come back, have a nap, wake up, go for a swim. Come back, have lunch, play in a bucket of water til whingey, go for a swim.....you get the picture. Ayla was in heaven.



There was one major drawback......SANDFLIES! Ugh. I absolutely will not use chemicals on anything to do with my living space, myself or Ayla....but camping we didn't have a choice. We had to resort to the good ole Dettol and Baby Oil remedy...only I just couldn't commit all the way and insisted on paying $15 for a tiny bottle of almond oil instead! I know it sounds weird but it does actually work. You mix them together 50/50 and smother yourself in it...the Sandies won't touch you! Promise. The worst hit with the bites were Ayla and Mum and it appeared that Mum might have had an allergy to them so she had to resort to antihistamines as well. And that kinda contributed to her wanting to go home after a few days...Sorry Mum. Majority rules and we stayed :)



I know that up and down the coast of Queensland was rain, rain, and more rain but we actually had perfect weather. We had a few showers and storms in the late afternoon and evenings but the days were fine and hot and perfect for swimming. We won't talk about the fishing....needless to say that Steven and Dad's record remains intact. Good onya boys!

On the way home, we stopped in at Steven's Mum's house to visit her and his sister and Ayla's cousins. Ayla slept for most of the afternoon but it really warmed my heart to see her 2 cousins actually wanting to interact with her. A lot of kids their age can't really be bothered with her and considering we only see Bridee and Aaron once or twice a year, I was really chuffed that they actually asked if they could give her a cuddle. Awwww....



So that's us! Hope your Xmas hols were just as lovely as ours and that you all stayed Happy and Healthy.

We wish you all an amazing 2010. I know lots of people that have really done it tough in 2009, so here's to a much bigger and better year in 2010. May all of your dreams, wishes, ambitions come true and for those of you who have littlies like Ayla....May your little ones reach milestones that make your happy tears flow.

Deck the Halls.....

Deck the Halls with Vomit and She-ets, fa la la la la la la la la.....

3 more sleeps until our camping trip to Burrum Heads and all is well with the world....Can you hear my sarcasm? Steven's down with a flu, Ayla has picked up a vomitting bug from her little friend, I'm feeling a bit nauseous, I have forgotten to organise a couple of Christmas presents, I'm supposed to be getting washing done so we have clothes to go away with but seriously the vomit has to be washed first, and I haven't even started packing yet. I've printed off the checklist....does that count?

Standing Tall

This is just a super quick update that absolutely can't wait for a photo....cos I don't know when this will happen again.

On Sunday afternoon I was downstairs sewing up a storm for the markets. Ayla had been sleeping but I was pretty sure that she had woken up. Next minute, Steven came downstairs with Ayla in his arms and he was crying. He said, "Tell mama what you've done". I thought, holy crap, she's killed the cat or something.....

Nope. Steven said, "She just stood up, all by herself! She pulled herself up on the couch to get to some chips". HOLY CRAP!!! This is the most exciting development that we have had with Ayla since she learnt to sit up by herself...and that was quite some time ago now. I am now patiently waiting for the planets to re-align so that I can see it too :)

C'mon Ayla.....you know you want to....

Guest Blogger: Grandma's Story

Well, you guys are being spoilt this week....3 blogs in a week!

A few weeks ago I promised that there would be the occasional guest blog on here. I knew Mum had been itching to give voice to the thoughts in her head so I gave her the first opportunity.

I've just read her blog post. It caught me a little by surprise. I didn't quite realise that she knew exactly the thoughts and feelings that flow around me on a daily basis. It's not something that I try to dwell on daily or talk about....saying it out loud has a tendency to make things a little more real and I kinda prefer to distance myself from it a little and pretend that my life is normal. And it is normal when I compare it to lots of other similar families.

So here you go. This post was written by Mum (Robyn) and Ayla's Grandma. Enjoy.



I have just finished reading the latest blog entry and all I can say is wow. If that doesn’t give us hope for change then nothing will. The therapy is hard to explain, now we see the results and with the report we gain understanding. What we need to do is find the money to continue, and continue we must. Melissa and Steven put in all the hours of hard work with the therapy, and Ayla endures that therapy. So come on everyone help us to find the way to raise the money needed please.

When Melissa invited me to be her first guest on the blog, my thoughts were not what was I going to write about, but rather how can I find the words to express what I feel without going over board. I hope that I have achieved that.

As Ayla’s grandmother I would like to say that I have been there with her from the beginning, well almost. I don’t think Steven would appreciate right from conception. I watched Ayla come into this world, she was the most beautiful baby and the birth was spectacular. The beginning was hard, as things were not right, but we did not know what was going on. Many months and many sleepless nights for Melissa and Steven led to the diagnosis that they now have. This beautiful child now had a label that makes her different from other children.

Melissa has tried to say what that is like from her perspective and I wanted to say what the flow on effects were like for the extended family, however I struggle to find the words. I have a grand daughter who has to bravely fight for every movement that we all take for granted. I have a daughter who wanted nothing more than to have children without the complications, and to watch them grow and become independent adults.
When you experience grief and loss, you go to a place were no one else can come, not even those that you love dearly. I know that place; I went there when I lost my son. Now my daughter is there, and I want to be there with her, but I can’t. My place is different than hers. I guess what I am trying to say is that suddenly as a mother I cannot take the pain away and make it better, and I want to. I wanted my granddaughter to run into my home, and I wanted to hear her say “grandma, grandma, I’m here!”.

I feel a special connection with my granddaughter, I love her dearly. Beautiful? Oh yes she is, and if you take the time to look into her eyes, she communicates in her own little way. She is so precious and I will fight for her every single day that I am alive to do so.

Last night I watched a program on families struggling to care for children with autism, I work with families like those every day in my job. The support from Disability Services is non existent, as stated on the program. I know Melissa has said that they are good in her area, but I would ask ‘Good at what?”. Not financial assistance towards therapy, not emotional support when you crash. No early intervention centres, actually nothing that I can think of. Many mothers who hit the wall have phoned for support and they are told that it will be a week turn around before they can speak with someone. I had that response when Lis hit the wall, and it is not a nice feeling to know that you’re just a number, and who really cares anyway. Caring costs nothing but a little time and empathy, and you would think for in excess of $70,000.00 per year pay they receive, they could find a little of that. They dump and run on the community, well known fact, even they know that is true.

I feel angry at the system that does not help families and then prevents them from finding the means to help themselves. In this I refer to Melissa’s attempts to fundraise for Ayla’s therapy, damned if you do and damned if you don’t, Melissa never made charity status so that she could offer tax deduction incentives, and to run charity golf days etc

I have saved the best to last. Can you imagine what it is like to arrive at work and find your desk covered in knitted and crocheted items? Well I can, I experience this every week, delivered by my work colleagues, from acquaintances and even people I don’t know. Then I receive phone calls to come and collect a few things for the market stall and I find a whole bedroom full of items that have been lovingly made by 80 year olds.
These 80 plus ladies stand to the side, glowing with excitement that they have created these wonderful items to help my granddaughter. My work colleague’s needle felt flowers during lunch breaks and at home most nights, they sit at their sewing machines before work and after, to make items. Others knit and crochet for Ayla; some have never done craft before. One colleague offered to help make butterflies and asked “how do you do a purl?” I looked at her and asked “are you kidding” she was not. To the Betty’s, Rene’s, Myrtles, friends at work, and all the others (too many to name) I am forever grateful. Thank you Jean for enabling me to have a break from the markets, by going for me once a month. Ayla has touched many people along the way and we all thank you for your amazing generosity.

We take this journey one day at a time, and hope for a little miracle along the way. Money is now low for the therapy, and somehow we have to find the means to continue. We will I know, as my daughter will never give up while there is hope. I think those of you that read her blog, know what an amazing woman she is. I have always known that, but she is tired, and she is hurting, she strives every single day to find the means to help her daughter. It is Christmas soon and Santa may help us find the capacity,
(or the money) to do what we have to do.

Robyn – Grandmother, mother, friend and wife

In Comparison

Some of you may be wondering what the results were of our last ABR comparison report for Ayla...well according to my Mum anyway :). So I thought I would share it with you as well as some photos of Ayla with her 'machine' on.....Our very own Android.

The comparison files are really in depth and include photos so I thought I might just add one here and there over the next few weeks. I'll add my favourite one first.


February 09


October 09

The paragraphs below, in italics, are taken straight from her comparison file. I haven't edited them....basically because I'm too lazy :)

The quadruplet position in Feb09 yielded this strange placement of her arm. We could how much the shoulder blades were depressed and how the humerus went into the most unusual backward twist. In the home video of Oct09, she is beginning to hold her position with the elbow although we could see how she still used the trapezius muscles to help her with the position. So in that sense it is still fake support from the shoulder. But what we could clearly see is the change of the shoulder joint. The shoulder joint has strengthened to the extent that the arm no longer does such strange backward twist by itself. What is really more important is that she begins to use her elbow meaningfully for the support of her upper body.

The manner of the legs spread has changed as well. In Feb09, Leonid had to hold the entire legs to ensure that her legs would not spread outwards and shot out of the quadruplet position. Her ‘froginess’ of the legs have clearly changed. With much less restraint provided by the mother in the home video of Oct 09, her legs do not spread out as before and she is able to hold the quadruplet position even though it is still less than the real quadruplet position expected.

Note how her shoulder blades slide all the way upwards to the base of skull wheras in Oct 09, her shoulder blade begin to leave the region of the base of skull. That was in Feb 09, she was completed incapacitated by the depression of the shoulder blade and by the upwards slide of the shoulder blade

This was the result that had us really excited. The change is absolutely visible, and not just to us. What also excites me is the possibilities that this could lead to. There's a chance, however small, that Ayla may actually be able to crawl eventually. But for now, we take each small improvement as it comes and we put our heads down and our butts up and we work....Hard.