Wednesday, April 9, 2014

I Have a Teacher Crush

So here we are 10 weeks later and I'm pleased to say that, this year Ayla's mainstream school ROCKS!

Everything has come together and the tears of the first day of school (mine ...not Ayla's LOL) are a thing of the past.

Ayla has a truly amazing teacher this year.  A-MAZE-BALLS!!  Ayla is finally TRULY included in her class.  She is a part of the lessons that the other kids are taught and her teacher has very creatively come up with ways of including her in each lesson. 

This teacher absolutely GETS IT.  She has understood that Ayla needs to be pushed to make choices and thus gives her choices.  She understands that if Ayla could give a consistent 'yes' or 'no' answer to questions, that her whole world of communication will open and she is working hard on this. Ironic that a 'fresh from uni' teacher understands more about Ayla's communication needs in 2 weeks, than a whole swag of government Speech Therapists in 6 years!  I have a serious Miss W#@$s crush right now.

Our parent/teacher meeting in the second week of school revealed to me that Ayla's teacher really does listen.  She said to me that there was one little thing that she heard me say in the first week that really spoke to her and affected her, and that was, "Everyday I ask Ayla what she did at school that day and the silence is deafening.  I have know idea what she does at school or whether she enjoyed her day".  Her teacher acted on this immediately and at the end of each week, I have received a picture collage of Ayla's school activities for the week and you can browse through them below.  Some of my favourites aren't here ....They are in pdf format and I haven't had time to reload photoshop on to my computer so that I can convert them to a jpeg. 

And newly implemented is a daily activity log of removable pictures telling me what lessons she did that day and how it made Ayla feel.  This is really exciting because it means that at the end of the school day, I can sit down with Ayla and we can go through this together.  It's like having an after school conversation with my daughter!!  It's almost normal .....almost :).

Tuesday, February 4, 2014

Hit the Ground Running?

I'm feeling really lost today.  And confused.  I want to react quickly and decisively but I don't want to do 'my usual' and react too quickly without completely understanding what's going on and what should be going on.  I just know that what I saw this morning, Ayla's first day back at school, is not ok.

I knew the beginning of the year was going to be full of surprises.  Everything is new this year, in both schools.  At her mainstream school Ayla will have a new teacher, a new principal and a new LSA (so I thought) and at the specialist school, a whole new teacher and LSA team.  I found all of this out in the last week of school which, in Canberra, is only days before Christmas.  It makes it really hard to get in there and plan for the new year.

I rang her mainstream school 10 days ago to get a meeting to see if we could get things nutted out answer, no return phone call.  I should have known then that things could get interesting.  I just wanted to keep an open mind and try to feel excited about everything being new and different this year and see it as an opportunity to make things better this time around.  Unfortunately, within minutes of entering her school I could see things weren't right.  Ayla's LSA from last year, was teary and trying not to get upset whilst trying to avoid discussions of what was going on this year.  The deputy principal who is normally very friendly and always engages in conversation was remaining well in the background and also avoiding discussions.  Something just wasn't right.  I met her teacher who seems to be lovely.  She is relatively new out of university having taught at Ayla's school for 2nd semester last year, but the kids, teachers and parents are very responsive to her and she was very engaging when introduced to me.

It was going into Ayla's classroom that caused me to fall apart inside.  An LSA wheeled Ayla into her classroom and when I asked her if she was Ayla's new LSA she said, "Kind of, not really".  WTF is that supposed to mean???  My blank, open-mouthed look must have said volumes as she quickly responded that this year there are not enough LSA's to go around and that the 4 LSA's at the school are rostered to care for Ayla in a rotation.  My mind immediately started creating little bullet points for later:

  • No student/LSA relationship.
  • No continuity for Ayla, the LSA or the teacher
  • Very unlikely to be communication between the LSA's, which means
  • Very unlikely to be good communication between the LSA's and myself.
The teacher began her class with a get to know you session where the kids were given a list of questions to answer regarding their holidays, their families, their friends etc.  Ayla was given a box a blocks to play with.  And the LSA asked me what she should do with Ayla right now?  My immediate response was, "This really isn't going to work for any of us, is it?"

 They have made no plans.  NO PLANS.  Nothing is organised.  Apparently, the teaching staff didn't even know which grades they were teaching until late last week.

A mentor of mine often says, "If this was good, what would it look like?".  I keep reminding myself of that.  I keep asking myself the question.  And I know that the answer is this:

  • it's a clean slate
  • it's an opportunity for me to step in and make it something special
But I'm scared and I don't know how to make it special.  I don't know how to help.  I don't know who I need to talk to.  I feel unsure of the Principal and her role in all of the unhappiness that I saw today.  And I have so much on my plate, I don't know how in hell I'm supposed to fit creating Ayla's mainstream educational plan in to the year as well. And I feel like I need to wait until the tears stop before I start trying to tackle the situation ...but then I don't want to leave it too long either.

For now I'm taking deep breaths and wiping away my tears because they really are not going to help me here.

Friday, November 29, 2013

Restoring Hope

Yesterday I had the pleasure of attending the Imagine More Conference here in Canberra.  I only attended Day 2 with hopes of collecting ideas on how we can create an inclusive environment for Ayla, especially at her mainstream school.

There were some great sessions to listen to from learning about segregation to creating communities around our kids, inclusive education, modifying the school curriculum, the NDIS and advocacy.  I have lots of ideas written down to come back to.

But the interesting thing is this .....I had an almost devastating lightbulb moment within the first 3 minutes of the morning welcome!!  It set the tone for the rest of my day and at times left me feeling completely bereft and a little desperate to fix it.

Jan Kruger (of Imagine More) began discussing HOPE.  In an instant, my stomach dropped, my heart sank (and hurt) and a lump formed in my throat as I suddenly realised ...."I've lost hope".  Over the past 18 months I have been gradually losing hope for Ayla ....or perhaps losing hope for the plans and goals that I set for her.

It has been tough to realise that all of the ideas and plans that I had put in place when she was a wee one, just weren't happening and possibly wouldn't.  We still have no clear communication method with her and I consequently have no idea of her cognitive capacity.  I nearly cried ...several times.  Ok, there were a few tears in the bathroom and again on the way home in the car.

All of this has led to me one conclusion.  I can't plan anything, until I have yet another go at finding a reproducible way to communicate with Ayla.  Once we have communication (on some level), then I can start to make new plans and goals ....bigger plans and goals.

And just a little update on Ayla:
She didn't have tonsillitis!  LOL  No, she had Hand, Foot and Mouth so badly that she had to be hospitalised because she couldn't eat or drink.  She's been very irritable and crying most of the day for 2 weeks now (despite the HFM being gone) and she has conjunctivitis as well.  It has been very challenging.  The neurologist suggested that her current symptoms are consistent with viral meningitis (as a result of the HFM) and thinks that as well as fatigue, she is probably experiencing headaches and that it could last a few weeks yet.  She has had a good day today but we will see what the weekend brings.

Sunday, November 17, 2013

My Poor Big Girl

Ayla is currently up at the Canberra Hospital.  The poor little kid has been sick for a week now.  Not just a cold or flu.  It's the end of the school year and we pushed her a little harder in the last couple of months with hydrotherapy on Friday afternoons, she had her ABR workshop in October and on returning, we have increased her therapy too.  It was clearly not our brightest moment.  She's so rundown and exhausted that she currently has tonsillitis, middle ear infection in both ears, conjunctivitis and a huge cold sore.

It has been really challenging with 2 different antibiotics plus prednisone and still no response.  She hasn't eaten in a week.  This morning we made the decision to take her back again and Steven contacted me to tell me that they had knocked her out with a painkiller and filled her full of more steroids.  She still may be admitted.  So many drugs in such a tiny little body.  I have absolutely no idea how I'm going to clean up after all of that.

Although I know that Daddy is with her, it's hard being at home while she's in hospital, but Billie still needs her sleeps and a hospital is no place for the healthy.  There's no point in having Billie bring something home as well.  There's precious little sleep to be had as it is.

So I think that there will be at least another week off school and very little going on in Ayla's life for the rest of the year.  Roll on January ....can't wait to spend a few weeks at Mum and Dad's place, hanging by the pool with the kids.

Tuesday, October 15, 2013

We're Back and We're Better than Ever

It has been such a long time since I wrote a new post. Almost a year. Every now and then somebody contacts me and let's me know that they have read my blog and been inspired and it's a reminder that I didn't just start this blog for myself but to help others too.

Every day a new precious baby is born with a disability which means that every day, another parent needing understanding and some practical ideas is created. These parents don't just need understanding, they need hope that although their wee one may never 'recover' from their disability, there is hope for their children to have a wonderful life. Sometimes I'm one of those parents all over again. And after a full weekend of an ABR workshop for my daughter's therapy, I'm reminded too that there are so many parents out there that haven't discovered the one therapy that truly works.

I'm not going to attempt to get you up to speed with absolutely everything that has happened over the past year....just a few little important things. The most important is that Ayla is now a big sister! Beautiful baby Billie was born on March 7 of this year, all 9 pound 12 ounces of her. She has been a beautiful and very special addition to our family. I know all babies are special but Billie really is very special in a very unique way and if you would like to know why, check out this old post.

Ayla is doing very well. We had lots of dramas with new seizure meds, loss of skills and then a slow regaining of skills and now she is back to her old self. I've also had to pull back for a little while I rethink my goals for Ayla. I want so much for her that sometimes I think I set her bar a little high and sometimes we all just get plain ol' frustrated with each other and it's time for a rethink.

We continue with Ayla's ABR, albeit at a reduced rate due to the newest family addition, but I'm ready to get stuck into it again. New exercises, new methods of doing them and then some good changes in her structure have me motivated again. Thanks to ABR (Advanced Biomechanical Rehabilitation)the structure of Ayla's body is very 'normal' and the more normal it becomes, the better able to use it.

We are hoping to head off to Singapore for a workshop next year and to catch up with the creator of ABR, Leonid Blyum. Leonid has such a crazy busy schedule of clinics and is constantly researching to ensure our kids have the best of him so he has only been to Australia once and that was over 5 years ago. We are looking forward to catching up with him and showing our Ayla and her achievements off.

Monday, November 19, 2012

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!

Monday, September 10, 2012

Spring Snow Bunny

It's official!  Our kid is definitely a Snow Bunny.  Last year we were pretty sure she enjoyed her ski trip but this year left no doubts in our minds.

We decided to go for Spring skiing this time around as Ayla seemed a little cold last year and we went along with some fabulous new friends too.  Thanks Caz, Jasmine and Zahara, we all had so much fun and it's always better sharing it with friends.

We spent 2 nights staying in a fabulous apartment in Jindabyne and one day on the snow.  The morning of 'Snow Day' was a little shaky to start with as Ayla had one of her big seizures at around 5.30am so tired and grumpy as hell didn't really go close to explaining her mood.  Right up until popping her in the sit ski, it was all looking as though it would go pear-shaped. But true to form, Ayla surprised me again.  There was no mistaking how much fun she was having.  She smiled and giggled all the way down the slopes ....and whinged and complained the entire time on the Chair lifts.  Probably because she couldn't wait that long to get to the top again.

Her instructor, Jordi, brought her back after 90 mins for a bite to eat and I was hard-pressed getting food in her mouth because she couldn't stop giggling and babbling.  And then off she went for another hour of fun.  It was so good to see her mood change so dramatically from when we first arrived.  It made it really clear that snow skiing was definitely her idea of Winter fun and absolutely worth the money spent on it.

If you are ever thinking that you would like your child to take advantage of their ability to have fun no matter what their disability, I highly recommend that you jump on the Disabled Wintersports Australia website and sign them up.  If you want more info check out my blog post here.