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 :).

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 ....no 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.

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.

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.

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.

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!

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.

Fear

If there is one thing that every parent fears, it's losing their child.  If you're a parent of a child with a disability, that fear may sometimes border on the irrational.  It goes through your mind A LOT.  This fear never occurred to me until Ayla started having seizures.  Don't get me wrong, most of Ayla's seizures are little more than an annoyance for her and her sleep deprived parents but some of them are not.

What is worse, is knowing that that 'big one' is coming.  You can see the signs.  It's almost like her brain is irritated.  She struggles to sleep peacefully at night and instead wakes every 45 minutes to an hour, sometimes giggling, sometimes playing with her dolly, sometimes vocalising.  Sounds harmless, I know.  And then there is the fabulously great mood that she is in for the 24 hours before.  If you were a fly on the wall you would see Steven and I exchanging sideways glances at each other as the hours pass by....just waiting.  And while we wait I begin to wonder 'how big will this be?', 'will we be able to stop this one?', 'how big can these seizures get?'

Asking why, really isn't my style.  It seems totally pointless because we all know there isn't any answer.  It's totally rhetorical.  But Ayla already has so many challenges to face and it pisses me off that she has to deal with this too.

Last week a question was asked of a fellow parent of a child with disabilities what their child's life expectancy was.  After having read this post, I hope that all of you will realise that not only is that an extremely rude question to ask of anyone, it is downright cruel to ask it of a Special Needs parent.  It's on our mind all the time.  Don't be surprised if you have your eyes verbally scratched out by the parent ....you will absolutely deserve it.

Happy Days..

We have a little news to share.  It's been so hard to keep it a secret.  I'm busting with excitement and want to shout it from the rooftops.

I'll give you a clue ....pitter, patter, pitter, patter ...... Got it?  No?  Ok then.  There's going to be a new member to a our little family and it's not of the furry kind.  Ayla is finally going to have a little brother or sister to play with!  And to love her like we do.

I feel quite emotional at times.  It has been such a long and painful 5 years.  That's how long I have been wanting to have another baby but with Ayla's condition being genetic, the chances of it happening again were far too high.  I watched friends and strangers fall pregnant and have their beautiful babies.  I have felt so ecstatically happy for them, and at the same time, so devastated and heartbroken for myself.  You can't imagine the pain and the turmoil that goes on inside as you fight so hard to keep the heartache from your face while you're around them.  And you want so much to hold their beautiful newborn babes but you know it's going to be like a knife through your heart.  But the tears come and the tears go and you just have to get on with it.

You are possibly wondering why or how this is happening if we are so afraid of this condition striking our family again.  We have been having IVF and Geneticist appointments for around three and a half years now, looking at all of our options.  To be honest, there weren't really any options.  If we went again naturally, we were risking a 1 in 4 chance of the condition happening again.  If we chose to go down the route of donor sperm or donor egg, the risks were only reduced to 1 in 10.  Still too high.

A couple of years ago we were made an offer that we simply couldn't refuse.  The possibility of donated embryo's.  If you haven't looked at this option in your lifetime then you simply wouldn't know that couples sit on donor embryo lists for 5 years or more.  Sometimes they never receive that gift.  To be contacted by someone and have them tell you that they have frozen embryos that they are not able to utilise and that they want to give them to you ....it left me beyond speechless.  Steven and I didn't have to think on it too long.  What an amazing, selfless, generous and loving gift to receive.

And so here we are ......

It's still early days and yes, society suggests that you don't tell anyone until that magical 12 week mark but I can't help thinking that telling people isn't going to change any outcomes.  I have a strong sense that our fates our pre-determined (to a point ....kinda like a "choose your own adventure book").  So I'm sharing because I just can't wait anymore.

Happy days..... xx

A Defining Moment

Tanjung Benoa Peninsula - Early Morning

Today is the first day that I have had an opportunity to stop and reflect on my recent holiday to Bali.  We arrived home just over a week ago but only days after arriving home, my Mum arrived and we were off to Sydney for Ayla's latest ABR workshop.


For some reason whenever I think of Bali, I think of this little photo that I took early in the morning on day 3.  At first I thought it was because I was proud as punch of the photo but then I realised why I truly keep coming back to it.


I haven't shared with you some of the 'debacle' that was our holiday.  If you are friends with me on Facebook, you will know what happened.  For those of you that don't know.....long story, VERY short......the airline 'lost' Ayla's Chair (read 'her legs').  We had to carry a 20 kg child around in our arms for the first 5 days of our holiday while our airline played games.  It left us fairly well stuck within the vicinity of our hotel as 20kg is just a bit too heavy.


So this photo was taken in the early hours of Day 3.  I crept out of bed so that I could catch some quiet time and go for a walk along the beach.  It felt so good to be on the beach early, with the sun rising and chatting with the hard working people of Bali as they went about there job of raking up seaweed off the beach.  I felt good and happy too.  I reached the furthest point of the peninsula and walked out to the little hut set out off the shore, sat down and snapped this shot......... and then had a good ole blubber fest!  I was a little surprised at myself because I thought I was feeling really good and then all of sudden I felt completely overwhelmed with EVERYTHING!  And I mean EVERYTHING.


The loss of Ayla's chair, the treatment we received from the airline, the fact that the loss of her chair meant I was doing everything that I came on holidays to escape (the phone calls to people who didn't care, chasing people up, filling out paperwork, advocating for my child, trying to find help amongst family and friends, feeling completely stuck), the hours that I had been working leading up to the holiday, the fact that I was so exhausted.......seriously.....EVERYTHING!  I cried for at least half an hour.  And then I realised that I needed to pull myself together because it was a really long walk back to the hotel.  I stood up and dried my eyes and starting walking back.  I put one foot in front of the other all the way back and by the time I arrived I felt normal again and happy again.


What makes this a defining moment?  At first it just seemed like the story of my life, until I understood that what defined it was that I recognised that, no matter where in the world I am or what is going on, I have the strength to stand up, dust myself off and keep putting one foot in front of the other until I come out the other side..... and sometimes I even get a nice photo to prove it :).

Adventure me

Sometimes you have a day that makes you feel alive again.  One of those days that reminds you that you are not just a Mum, not just a Carer....that you are in fact, yourself.  An individual.  A person that has always loved adventure.  I had almost forgotten.

When I was in Year 12 I went on a tall ship waaaaay off the coast of Bundaberg where land couldn't be seen.  I spent the day jumping off the front of an enormous tall ship, landing in the freezing cold and extremely deep open ocean and then quickly grasping for a thick rope before the ship sailed on by me.  It was exhilarating!

For around 3 or 4 years during university, I was part of the Sea Turtle Research team at Mon Repo and I spent 2 weeks over Christmas walking around and around a teeny tiny Wreck Island, tagging sea turtles.

I spent 2 years trapping and researching Playtpus on the Gold Coast and doing LOTS of camping.

When Steven and I were married we went to Hawaii for our Honeymoon and spent 2 weeks Boogie Boarding at Bonsai Pipeline, walking over to volcanoes, climbing waterfalls and trekking alongside 300m drop offs, and exploring lava tubes.

I've been snorkeling on the Great Barrier Reef, snowboarding at Thredbo.......

This is who I am!  This fun and adventurous person.  It's sometimes difficult to remember that.

Today we spent the day Abseiling and Caving in Bungonia National Park!!!  I'M BACK BABY!!!  It was such a fabulous and exciting day with a great bunch of friends.  I was relaxed and happy and having fun.....I WASN'T worrying about work, about whether that person had emailed the information yet, packing for Bali, cleaning the house, cooking next week's snack foods and meals....BLAH BLAH BLAH.  Don't get me wrong....I do all of those things because I choose to.  But all work and no play makes Lissy VERY uptight and lost.  Today was fabulous and Steven and I have both agreed that we want to go again....on a much BIGGER cliff!!  Maybe Canyoning could be on the cards too.... :)

Bali Bound

Next week we are off (the whole family) on our first ever international holiday since Ayla was born.  It's a super exciting time for all of us....but I can't believe just how much preparation is needed to travel with a child!  Last time we went, we packed the night before but this time around it feels like I have been mentally packing for a month.

I think the most daunting aspect of this holiday is that Travel Insurance for Ayla just isn't going to happen.  And I believe that because she has a pre-existing condition.....if her pre-existing condition impacts on our trip (in other words - stops us from going or brings us home early), it is at our expense.  Not to mention the little niggly worry of hospitable costs if they are required whilst we are away.

And yes these are very real concerns and possibilities but I just can't bring myself to have the entire family living in a protective bubble because of what if's.  We all have to live and experience the joys around us.  Hell, there's risk in crossing the road and I do that several times per day.

So Bali here we come.......

If I can work out how to share photos to the blog whilst away....I will....but don't hold your breath :). It might have to wait until we come back.

Oh and a travel tip for everyone travelling with young kids.... hit Little Gullivers.  These guys have made our trip so much easier!

7 Things You May Not Know About a Special Needs Parent

There are some days that my feelings can flow right out of me, through my fingers and onto this 'virtual' page.  And other days, they just can't.....and then some days, I'm so exhausted that I'm not sure if they can or they can't.  Today is one of those last days.

I worked all day yesterday until 8.30 last night.  I worked doing what I love so although it is absolutely exhausting, in some ways it fills me up too.  But when you add an odd (read:  frigging scarey) seizure into the mix, just as I am trying to fall asleep, it turns my recovery day into a bit of a down, can't-get-out-of-my-own-way kinda day.

All morning I have been feeling as though I'm just not sure how I'm doing today.  Am I just tired?  Am I frustrated? Am I frightened for my child? Am I overwhelmed?  What the hell am I??

And then this little piece landed in my inbox.  I'm going to copy and paste it below.  It's written by another Mother of a special needs child, and I don't think that I could ever have written anything so perfectly. 

I'm putting it up here for a few reasons.  The first reason is that I really want my friends and my family to read this.  Please don't just let your eyes move over the page.  Please take it in and process it.  Not because I want you to feel sorry for me but because I want you to understand me on a level that I just can't explain to you.  When you ask me how I'm going.....my answer will always be 'good', because I want to be 'good', because I choose that for myself.  But sometimes my answer is 'good' because I just don't know what else to say.  The second reason I am putting this up here is to help other parents in similar situations try to decipher what their feelings are.  Sometimes their feelings need to be written by someone else.  And the third reason is to inform.  There are so many people out there with disabilities or who are raising children with disabilities and if I can help just a few of you to see more than what is on the surface of their lives, the world will be a much more empathetic place.

Please don't feel sorry for me or for Ayla.  We really do have an amazing life and we see and appreciate things on a completely different level to most.  Most days I move through life with happiness and excitement and a desire to be exactly where we are.  It's just that on some days, I'm so tired or frightened that for just a moment....I can't be that person.  Just for a little while.

7 Things You Don't Know About A Special Needs Parent

Posted: 03/ 9/2012 5:21 pm

About 6 million kids in America receive special education, according to the U.S. Department of Education. One out of every 10 children under the age of 14 has some type of special need, which includes any physical, cognitive, or medical disability, or chronic or life-threatening illness.
My 3-year-old son Jacob is one of them.
He has a disorder of the 18th Chromosome. The 18th Chromosome has various named disorders, including Ring 18 and the more well-known Trisomy 18 (which affects Rick Santorum's daughter, Bella). My son has the more rare 18q-. Only 1 in 40,000 Americans have Chromosome 18q-, which means that less than 7,800 Americans are affected by this disorder.
Because of this disorder, Jacob has had serious medical and developmental issues. He has had heart surgery, kidney tract surgery, bronchoscopies and endoscopies, slept with an oxygen tube, and has had dozens of medical tests and sees numerous specialists. We've been in and out of hospitals and doctors' offices since he was three months old. He also has severe developmental delays and receives speech therapy, occupational therapy, physical therapy and behavioral therapy.
Raising a child with any disorder, condition or special need, is both a blessing and a challenge. A challenge for the obvious reasons, and a blessing because you don't know the depths of victory and joy until you see your child overcoming some of those challenges (sometimes while smiling like a goofy bear).
Chances are that you know a special needs parent, or you may be one yourself. As a special needs parent, I often don't share my feelings on this aspect of my life, even with my closest friends, so I decided to compile a list here with the goal of building understanding (I was largely inspired by this beautiful post, authored by another parent to a child with a chromosomal disorder). I don't claim to speak for every special needs parent out there, but from the ones I know, some of these are pretty universal. If I've missed any, please leave a comment below.

1. I am tired. Parenting is already an exhausting endeavor. But parenting a special needs child takes things to another level of fatigue. Even if I've gotten a good night's sleep, or have had some time off, there is a level of emotional and physical tiredness that is always there, that simply comes from the weight of tending to those needs. Hospital and doctors' visits are not just a few times a year, they may be a few times a month. Therapies may be daily. Paperwork and bills stack up, spare time is spent researching new treatments, positioning him to sit a certain way, advocating for him in the medical and educational system. This is not to mention the emotional toll of raising a special needs child, since the peaks and valleys seem so much more extreme for us. I am always appreciative of any amount of grace or help from friends to make my life easier, no matter how small, from arranging plans around my schedule and location, to watching my son while I am eating.
2. I am jealous. It's a hard one for me to come out and say, but it's true. When I see a 1-year-old baby do what my son can't at 4 years-old (like walk), I feel a pang of jealousy. It hurts when I see my son struggling so hard to learn to do something that comes naturally to a typical kid, like chewing or pointing. It can be hard to hear about the accomplishments of my friend's kids. Sometimes, I just mourn inside for Jacob, "It's not fair." Weirdly enough, I can even feel jealous of other special needs kids who seem to have an easier time than Jacob, or who have certain disorders like Downs, or autism, which are more mainstream and understood by the public, and seem to offer more support and resources than Jacob's rare condition. It sounds petty, and it doesn't diminish all my joy and pride in my son's accomplishments. But often it's very hard for me to be around typical kids with him. Which leads me to the next point...
3. I feel alone. It's lonely parenting a special needs child. I can feel like an outsider around moms of typical kids. While I want to be happy for them, I feel terrible hearing them brag about how their 2-year-old has 100 words, or already knows their ABCs (or hey, even poops in the potty). Good for them, but it's so not what my world looks like (check out Shut Up About Your Perfect Kid). It's been a sanity saver to connect with other special needs moms, with whom it's not uncomfortable or shocking to swap stories about medications, feeding tubes, communication devices and therapies. Even within this community, though, there is such variation in how every child is affected. Only I understand Jacob's unique makeup and challenges. With this honor of caring for him comes the solitude of the role. I often feel really lonely in raising him.
4. I am scared. I worry that I'm not doing enough. What if I missed a treatment or a diagnosis and that window of optimal time to treat it has passed? I worry about Jacob's future, whether he will ever drive a car, or get married, or live independently. I am scared thinking of the hurts he will experience being "different" in what's often a harsh world (not to mention that I fear for the physical safety of the person who inflicts any hurt upon my son). I am scared about finances. Finally, I fear what will happen to Jacob if anything were to happen to me. In spite of this, my fears have subsided greatly over the years because of my faith, and because of exposure to other kids, teenagers, and adults affected with Jacob's disorder. When I met some of these amazing people at a conference last year, the sadness and despair that I was projecting onto Jacob's future life (because it was so unknown) melted away when I saw the love and thriving that was a reality in their lives. The fear of emotional pain (for both me and Jacob) is probably the one that remains the most.
5. I wish you would stop saying, "retarded," "short bus," "as long as it's healthy... " I know people usually don't mean to be rude by these comments, and I probably made them myself before Jacob. But now whenever I hear them, I feel a pang of hurt. Please stop saying these things. It's disrespectful and hurtful to those who love and raise the kids you're mocking (not to mention the kids themselves). As for the last comment, "as long as it's healthy," I hear a lot of pregnant women say this. Don't get me wrong, I understand and share their wishes for healthy babies in every birth, but it's become such a thoughtless mantra during pregnancy that it can feel like a wish against what my son is. "And what if it's not healthy?" I want to ask. (My response: you will be OK. You and your child will still have a great, great life.)
6. I am human. I have been challenged and pushed beyond my limits in raising my son. I've grown tremendously as a person, and developed a soft heart and empathy for others in a way I never would have without him. But I'm just like the next mom in some ways. Sometimes I get cranky, my son irritates me, and sometimes I just want to flee to the spa or go shopping (and, um, I often do). I still have dreams and aspirations of my own. I travel, dance, am working on a novel, love good food, talk about dating. I watch Mad Men, and like a good cashmere sweater. Sometimes it's nice to escape and talk about all these other things. And if it seems that the rest of my life is all I talk about sometimes, it's because it can be hard to talk about my son. Which leads me to the final point...
7. I want to talk about my son/It's hard to talk about my son. My son is the most awe-inspiring thing to happen to my life. Some days I want to shout from the top of the Empire State Building how funny and cute he is, or how he accomplished something in school (he was recently voted class president!). Sometimes, when I'm having a rough day, or have been made aware of yet another health or developmental issue, I might not say much. I don't often share with others, even close friends and family, the depths of what I go through when it comes to Jacob. But it doesn't mean that I don't want to learn how to share our life with others. One thing I always appreciate is whenever people ask me a more specific question about my son, like "How did Jacob like the zoo?" or "How's Jacob's sign language coming along?" rather than a more generalized "How's Jacob?" which can make me feel so overwhelmed that I usually just respond, "Good." Starting with the small things gives me a chance to start sharing. And if I'm not sharing, don't think that there isn't a lot going on underneath, or that I don't want to.
Raising a special needs child has changed my life. I was raised in a family that valued performance and perfection above all else, and unconsciously I'd come to judge myself and others through this lens. Nothing breaks this lens more than having a sweet, innocent child who is born with impairments that make ordinary living and ordinary "performance" difficult or even impossible.
It has helped me understand that true love is meeting someone (child or adult, special needs or not) exactly where he or she is -- no matter how they stack up against what "should be." Raising a special needs child shatters all the "should bes" that we idolize and build our lives around, and puts something else at the core: love and understanding. So maybe that leads me to the last thing you don't know about a special needs parent... I may have it tough, but in many ways I feel really blessed.

Follow Maria Lin on Twitter: www.twitter.com/marialinnyc

Catchin' Up in Queensland

My poor neglected blog .... and followers!  I blame Facebook!!  LOL.  Seriously, everytime something little happens it goes straight to FB and then I realise that I have nothing to blog about.  So this time around, I am coming straight to you.....PROMISE.

Ayla and I have just spent 4 lovely days in Brisbane with Grandma and Grandpa.  We went up for a few different things. 

I had a 2 day conference to become one of 40 GAPS practitioners in Australia and I am currently just 1 of 200 worldwide!!  Weeeeeeee.   It's very exciting, especially since we have been told just how rigorous the selection for the conference was.  I'm feeling very privileged right now and just a 'leeeeetle' bit chuffed with myself.  GAPS stands for Gut and Psychology/Physiology Syndrome and you can find out more about it here.  If you or child is on 'the spectrum' (Autism Spectrum) or are sickly, prone to food allergies, have constipation, diarrhoea, asthma, eczema, epilepsy or tonnes of other conditions that fall under the GAPS list.....then check out that link.  It could seriously change the lives of your entire family.  I'm living proof....I have experienced eczema since the age of 7 and I am now completely eczema free.

Had to get a 'fan' photo with Dr Natasha Campbell-McBride!

 

While we were in Brisbane, Ayla also had her very first visit to the Dentist.  All clear there...no cavities and nothing to worry about, and Mummy was shown some tips for cleaning the monkey's teeth.  Mummy's got your number Ayla!!

Going Up, Up, Up on the Brisbane Wheel!

 

And then yesterday we FINALLY had our first visit with her Paediatric Neurologist since the seizures started back in August last year......yes, it really took that long!  For the past 4 weeks we have been gradually reducing one of Ayla's medications (Keppra).  This drug just wasn't for her.  Within weeks of it starting we were getting regular clusters of her 'BIG' seizures (aka Tonic Clonic) which are far more dangerous than her regular Myoclonics.  Every time the dosage was adjusted was a disaster.  Even when we started to adjust it down we had some scary moments.  It's finally gone now and we are staying on just the Epilim for the time being so that we can monitor what her seizures do and then we will start a new drug to see if we can reduce her Myoclonic seizures from EVERY DAMN NIGHT to a more respectable 'every 3 or 4 nights'.  It remains to be seen whether she will respond to any of it but if I have to fill my beautiful girl's pristine system with disgusting and addictive drugs, I would like to think we could have some relief for her.

Beautiful Brisbane day...

 

Aside from that Ayla had a lot of fun with Grandma and Grandpa, she briefly caught up with Nanna too.  I'm so sorry you didn't get to spend longer with her Irene!!  She was really uptight on Monday night and didn't go to sleep until almost 11pm and then kept waking up all night.  And we caught up with our very good friends Fran, Tony and Lucia.  Lucia and Ayla had a great time playing together and both of them have grown so incredibly TALL!!

 It's hard not to snap a shot when she's being so darn cute.

 Swimming with Grandpa at Southbank Beach.

I think you can see from the photos that we all found a new appreciation for Brisbane.  It was great to be so close to everything and just walk everywhere.  I do miss you QLD!!!  But for now our lives are further south.....and we love the ACT too.

All Full of Hot Air

5 am starts are NEVER fun......but today it was!  Mum and Dad have been visiting us this week in Canberra and it was just in time for the Canberra festival.  There is sooooo much on and this week is the Hot Air Balloon Spectacular.

We rocked up at the lawns of Old Parliament House at around 5.30 this morning and were greeted by THOUSANDS........seriously THOUSANDS of people flocking to exactly the same place.  We nearly didn't get a park!!  I couldn't believe it.  I had this picture in my head that we would be sitting quietly in the dark with a small group of people, on the grass and waiting patiently for the balloons to lift off.  Nuh-uh!  Thousands of people, breakfast tents, coffee vans, music playing, people booking balloon rides.....totally crazy but such a nice surprise.

Ayla really enjoyed herself too.  I think she was people watching more than balloon watching but she seemed really happy with all.  And who wouldn't be ......check out the photos.

It's a sign!

For the first time last week, Ayla has being doing her version of the sign for bath time. It's so bloody cute!

To date, we haven't had a lot of signs from Ayla, purely because she just doesn't have the fine motor skills for it, but she understands all of the signs we use with her regularly.

Ayla seems to understand the following signs:
Drink
Sleep
School
Home
Toilet
 Dog
Swimming
Drive

Ayla understands and is also able to sign finished and eat......and now bath time! Check this out!

PS:  Ayla 'understands' waaaaaay more words than those listed above.....it's just that I don't know the signs for them all ;).

Introducing.....Our newest furry addition

 On our way home with Quillie.

I'm not sure why but I haven't introduced our newest Furry friend in our Family......I guess with Xmas, moving house and all the craziness that goes with it.....I forgot.

This little man is Quillie and he is Ayla's new bestie.  And mine.  He's a Dandie Dinmont Terrier....or should that read Terror!?

 In the Tea Towel Draw.....I don't think so!

He's really very good.  He is just a baby.  If you ignore all the puppy 'fun', he's actually just like having an old dog.  We recently took him on a weekend away to an apartment at the beach.  He was incredibly well-behaved.  He didn't pee or poo in the apartment, he didn't bark and when we went out for lunch, he calmly slept under the table and didn't once beg for food.....now to get him doing that at home!

He's a gorgeous boy and adores Ayla.  He hears Ayla wake before I do and sits at her door whining to let me know she's up.  They both play as roughly as each other...with yips and yelps coming from both parties.

But he's DEFINITELY a puppy!  Don't believe me?  Check out this video......

What is the baby doing at school?

So....apparently some of the Kinder kids are asking "What is the baby doing at school?", and we might need to do a little talk for them.  *giggle*....it is a little bit funny :)

I have to say.....I'm not really sure what to say!  I would love some tips on how to explain to young children that Ayla's brain  is a little bit broken....

High 5s All Round!

Today was FINALLY Ayla's first day back at school!!  Can you hear the relief??  From all of us.

Ayla was completely bored, Mummy completely frazzled and Daddy......well, he's Daddy and he doesn't seem to notice :).

This year Ayla has a male teacher who just happens to be the same teacher that was in her shared class last year and last year's teacher was very thoughtful and put all of the children who gravitated toward Ayla into her class for this year.  Yay!  Gonna be a good year!

Communicate Me!

Last Wednesday we had a visitor at our house. Another therapist to 'evaluate' Ayla. I never look forward to Ayla being 'evaluated' as I am never sure what they are going to say. But this turned out to be a pretty good meeting. 2 ladies, one Ayla's speech pathologist who doesn't have a lot to say (she's either shy or she is deferring to the other lady), and the other, another speech pathologist specialising in augmentative communication.

JACKPOT!!!! .....*little sing song voice* 

Wow wow wow! Now this chick knows her stuff! She had Ayla completely worked out in half an hour and I actually agreed with everything she said. She's is really encouraged by Ayla's communication ability and thinks that developmentally, she's somewhere between 1-2 years and is what she calls an Intentional non-symbolic communicator to an early symbolic communicator. I know that sounds like jargon, but to me it's like music.

Long story - short......this lady has put together an incredible plan for Ayla's communication this year that has me really excited and she wants to train Ayla's new teacher and Ayla's carer, Joan, for me. If you have a child with communication issues.....you'll be hearing that music I was talking about. YAY! The teami have together for Ayla this year is going to be awesome......and I'm not letting them go! Their asses are MINE!!!

The video above is Ayla's communication with me tonight .......let's see where we end up!