Opposites Attract

I don't like to compare my daughters, but it's quite hard not too. They are complete opposites. You all know about Alice and what we've been through with her, her autism diagnosis, her quirks, her trials, my trials....things were hard. So many decisions had to be made for her, so many professionals had to be consulted. This is still ongoing, constant meetings, reports, emails, plans for her education need to be considered frequently. It's something I'm quite used too. I got used too the little girl who couldn't talk, I became her advocate. I understand that role as I've been doing it since she was two years old.

Madeleine has thrown me for a bit of a spin. I got used to the child who can't talk, who isn't particularly inquisitive in that "natural" way. Madeleine is not that child. At 16 months old she is already saying at least 25 words. She is so aware of everything going on around her, she repeats everything we say, she is into absolutely everything....we have child proof locks everywhere, something we didn't have to worry about with Alice. Maddles kisses us and cuddles us, she points things out to us, she knows everything that is going on in her world and isn't afraid to tell us about it.

Most days I watch her in awe. It's an amazing thing. To have a child like this after having a child with autism, or any kind of developmental delay, it's left me just dumbfounded. To have people at the park remark how well Maddie talks is something I will never get used to. I am not the mother with the child who is doing well, I've never been that mother, it's not what I know.

I'm the mother at playgroup/gymboree/swimming lessons who looks a bit embarrassed to be there, I'm the one with the child who cannot sit still for group time, who jumps off the ledge to the pool at the wrong time, who screams and refuses to participate with other children because they have found something that they want to do and that's all they can focus on. I'm the mother who watches the other children and compares her daughter to them, realising with every lesson how different she really is.

I can't get my head around not being that mother and some days I really worry that I won't be able to do it. How do I parent two little girls who need such different things?

The only thing I do know is that it is these differences that make me love both of them even more. After having Alice I love watching Maddles just "get" it. I love that she learns things so quickly with each day, I love that she is stubborn and throws tantrums already. I love her more with every new word she says, every new discovery she makes. I love that we have conversations already and when she is older I can picture the two of us going shopping together, going to lunch, gossiping together and fighting with each other frequently.

But seeing Maddles get this whole "development" thing so easily makes me appreciate how hard Alice has worked. Speech didn't come easily to her, but she got there.She is now reading home readers and doing so well and she just tries so hard at everything she does. She's easily distracted and a bit of a geek, she doesn't really like just chatting with me and would much prefer to play games with her Sonic the Hedgehog toys, but she tells me she loves me "so much" every day, she gets excited about the small things in life and her happiness makes me happy. When she is older I can picture her on her computer in her bedroom with a do not disturb sign on the door with a note underneath saying "Love you Mum."

Whether I can do it or not I do feel very lucky that I have been given these two opposite girls. Somehow they compliment each other, they are a perfect fit together. As I said in the beginning I try not to compare them - but why not? They are different and that's okay. I should know by now that being different is not a bad thing. Being different is beautiful.....and both my girls are beautiful.

Graduation

Last week Alice had her very last day at her early childhood development program, otherwise known as ECDP or to Alice "big school." A very emotional day for me...it's taken me over a week to be able to get my thoughts together and write a blog post about it.

We called this place big school because when Alice started there she was three years old. She was attending a tiny little daycare centre with only one room and twenty kids, so in comparison it was big. It was also simple for her to say...and back then stringing even two words together was still a bit of a challenge.

Dancing at Big School

I was introduced to the idea of ECDP by a member of an online parenting forum. I had no idea what an ECDP was. It was hard at this time. Alice was three and so obviously behind her peers, but we were hitting stumbling blocks with her diagnosis. Paediatricians couldn't give us a definite answer. We'd had her hearing tested, we'd increased speech therapy to fortnightly sessions we were doing what we could but no label meant no funding and we didn't know what else to do.

The ECDP don't need a diagnosis, children are able to enrol based on speech assessments if they are below are certain standard. So we went through the process of reassessing Alice's speech and applying for the ECDP. I wasn't hopeful about getting in...Alice was constantly put in this grey area where she didn't fit in with the kids that really needed help and she didn't fit in with the kids that didn't need any help at all. It was so frustrating. Amazingly though I got a phone call a couple of weeks later saying that she had been accepted and they wanted to meet with me as soon as possible.

Being treated like a princess.

I'll never forget the first time visiting ECDP. Never. I was so nervous. It was run out of a special school and as much as I knew this didn't mean anything I'll be honest...I was picturing padded cells and straight jackets. Alice at the time was very trying - every where we went I was petrified that she would make a scene. She was going through the terrible two's at three - which is much harder actually because she was a lot heavier. She had just started referring to herself as Alice and it was all about Alice. "Turn Alice's" "DO IT ALICE" were a few of her common sentences. She also had perfected the no bones routine (e.g. going completely limp and me having to drag her along) and was a runner, with no fear of cars or being lost. She'd just bolt. Going out in public was hard.

We arrived about twenty minutes early, because I was so nervous and when I'm nervous I'm early. What greeted us was not a scary, dark asylum but what looked like a beautifully cared for little school. Gorgeous playground out the front, large deck with gorgeous paintings of funny little characters painted along  the wall. Toys were scattered around the grounds and there was even what looked like a little race track.

She loved the computers there. 

In the meeting I met teachers who got it. They got that Alice didn't want to talk to them. They didn't ask her stupid questions "What's your name?" "How old are you?" Instead they told her excitedly about the toys they had for her to play with. They sat and listened to me while I told them about her struggles, her problems with expressing herself. How far she had come. How far she still had to go. They praised her, they pointed out her positives...not many professionals that met Alice had done that.

"A is for Alice!" 

They showed us around the classroom and we met the two little girls Alice would be put in a class with. I was amazed at the gorgeous classrooms, the touch screen computers, the books, the home corner set ups. Alice didn't want to leave. Neither did I. I finally found a place that got it. I finally found somewhere that Alice could blossom, could be herself and be cherished for being that.

ECDP ("big school") continued to make us feel safe and loved for the next two years. I cannot put into words how the teacher's there have helped my little girl. I really feel this place is the reason why Alice is doing so well today.

Saying goodbye last week was the hardest thing I have ever done. To me this was our safe place, our haven. This year especially, Alice's first year of school, she would not have coped without being able to go to "big school" at the end of the week.

Her graduation certificate.

On her final day, at the goodbye party, she ran out of the classroom and told me excitedly "This was the best day ever!" She said goodbye to her friends and teachers and we waved goodbye to the playground, and beeped the horn as we drove down the "big school" driveway for the last time.

Waving goodbye to the playground. 

As I write this she has just finished her first full week of prep. She did great, as I knew she would. We will never forget ECDP and all they have done for us. We'll always have the memories and I'll always be forever grateful to them for helping my little girl.

Running to the car for the last time. 

Holiday Bliss

I haven't posted in awhile but I have a good excuse, possibly the best excuse ever. 

I have just spent two beautiful, lovely, happy weeks with my beautiful girls. 

Alice was on school holidays. To some parents this might not be something to celebrate, but I was excited about them. I take Alice to school every morning, 8am we have to leave by as school starts at 8:30. Then back by 3pm to pick her up. I sometimes feel like I'm back at school again. So I was anticipating these holidays as a holiday for me. Add to this the regular after school melt downs in the car I can safely say by the end of last term I was OVER IT.

I had some grand ideas about what we would do in the holidays, cooking perhaps, I'd work with Alice on her writing, we'd work on her sight words and cutting skills. Sounds lovely doesn't it? Must be the teacher in me...

Well the teacher in me went on holidays because we did nothing like that.

Instead we slept in, we danced, we put on a performance complete with rehearsals and choreographed routines. We went to the park, we had Alice's very best friend in the whole world sleep over, she stayed up late, she watched movies, she spent far to much time on the computer, she got her very own pink iPad. We went to the movies, celebrated Madeleine's 1st birthday and stayed in our pjs till lunch time some days.

It was awesome. And in return I was blessed with my happy, beautiful girl again. The girl I haven't much seen since she started school. She was so relaxed and just gorgeous. I have treasured these past two weeks spent with her.

As of this week we are back to reality, back to her being stressed by the end of the day and melting down in the car. But that's okay I have the memories of the past two weeks and that's enough. Until then...10 weeks to go until  holidays!

Let her eat cake!

Something amazing happened today...so amazing and unbelieveable I had to get photographic evidence. Here it is.

Yep - you got it ladies and gentleman. My little girl, my Alice, ATE CAKE!

I'm sure most parents would not find this amazing in the slightest. But ever since I can remember Alice has hated cake. We thought it was funny at first, I mean who hates cake...seriously? I joked that she definitely didn't get it from me and it seemed a bit ironic given that her Uncle is a pastry chef.

Now we understand a bit more about Alice we've realised that it is most probably a sensory issue rather than and actual dislike of the flavour of cake. Her mouth senses are heightened and for whatever reason she just cannot handle the texture of cake in her mouth, same goes for muffins.

Alice has quite a limited diet in terms of what she will and won't eat, it's not just cake. She can't handle red meat unless it is mince and in a sauce. She will only eat chicken in nugget form. At parties she doesn't pig out on the birthday cake (though she always gets a piece and sits there looking at it like she wishing she could eat it) and hates most home made type party snacks.

When we have a roast dinner Alice has chicken nuggets and "white pasta" (alfredo packet mix). When we have chicken and rice, Alice has rice and sauce. No matter how tiny I cut the meat up, she finds it.

I'm sure people who don't have children with these issues are wondering why I'm a soft touch about this. I'm sure many are thinking "she's a child she eats what you eat no exceptions!" Ha. You haven't met Alice.

I learnt pretty quickly there was no point pushing food on her that she didn't like - mainly because she will put it in her mouth (she does like to please) and then promptly vomit all over the table, not just gag and spit up the bit that she was eating, no. She will literally empty the entire contents of her stomach. Even at parties sometimes just looking at things like cake will make her look like she is going to vomit. It's like she can feel the texture in her mouth just by looking at it! So I made a choice, I made a choice to accept her telling me she doesn't like something. If there's one thing I know for sure about parenting - it's all about picking your battles.

She has quite a good diet really, she loves fruit, yoghurt, cheese and ham. She loves taking a "burrito" (salad and ham wrap) for lunch at school. She eats things like homemade pizzas, peas and corn, carrot, lettuce, rice crackers. She will devour my spag bol, which little does she know is packed with mince and veges.

But cake. Cake is a big thing. Cake is what makes birthdays fun. She adores birthday cakes, loves blowing out candles, singing happy birthday, cutting it, but never eating it. Maybe, just maybe, by the time her birthday rolls around she'll be able to eat her birthday cake for the very first time. I know she'd love that.

Feeling thankful

I've been doing some research lately. Pouring over books about autism, blogs about autism - anything I can get my hands on.

Anyone that knows me knows that this is how I cope with things. I like to google and research, I like to educate myself on the subject. Not a bad trait for a teacher in training I think. So it makes sense that I've been trying to gain other insights in what its like for other families who have children with autism. The problem is that as the saying goes "if you've met one child with autism...you've met one child with autism." No two children with autism are alike. There are similarities sure and I can relate to a lot of what other parents are saying but really, there can only be one Alice...that much is a given.

A common theme I'm finding though is exclusion at school, not just exclusion of the child with autism by the child's peers but exclusion of the parent by other parents too.

I feel very thankful that this is something we never have never really had to deal with. In fact we've had the opposite. I like to think that maybe it's because of me, that I'm so friendly and likeable it makes up for any issues Alice may have....but really all the credit should go to her.

Alice is very hard not to like. Even when she is being cheeky (which is often) she is irresistible. I am not just being a bias Mummy here...I more than anyone know exactly how much hard work she can be. But ever since she was a baby people have adored her. We go camping every year with the same people and she lights up their faces when they see her. She walks around the different camp sites and makes herself at home. Her smile is infectious. She makes a dull room shine bright with her light. She is impossible not to love.

Even at school, her teacher will tell me something that she's done that isn't really the right thing to do and the teacher is laughing as she tells the story. Like, for example at her first whole school assembly when she tried to get up and put on a show for everyone...because of course they were all there to see her don't you know?

I watch her with the other kids at school and even they can't help but love her. The roughest boy in her class just yesterday when she asked for a turn of his toy just handed it over to her. The sweetest boy in the class is always putting his hand up to help her with things. She gets to school and the other kids greet her with genuine affection. The proudest moment of my life was seeing her play with a little girl - they were running around together holding hands, marching over to a group of boys to tell them what was what both with their hands on their hips.

And the parents, the beautiful parents at school, every single one who knows about Alice has been nothing but supportive...in the short time I have known them they have become my network of support. I know that when Alice bounds out of the classroom and starts chatting to me when she is meant to be getting her bag the smiles they give her are real, no fake or full of pity. They can see how much life is inside her, see how she glows. I feel very fortunate that we have this environment for her to grow in.

I am aware, through my reading, that this is not always the case. I am also not so naive to believe this is will last forever...I shiver in fear at some of the things I know we have ahead of us in her schooling future. But for right now she's happy and that's all I can think about today.

And really - who can blame everyone for loving her? What's not to love about this face?

Everyone needs a safe person...

When I tell people Alice has autism it's usually met with "oh really - you can't tell" or "wow she's so normal/social/outgoing/happy" you know because children with autism aren't ever happy, normal, social or outgoing (that was sarcasm by the way). Alice, bless her, is actually too social, she says hello to random strangers in the shopping centre, she has no boundaries. Anyway it always gives me a little laugh that so many people don't see autism in Alice - even family who know her so well, who know the troubles she's been through. It gives me a little laugh and makes me feel a bit crazy.

You see no-one sees the Alice that I do. Not even Matt. At school Alice blends in quite well with her typically developing peers, for the most part she does what she is told, she still has the physical symptoms, walking on her tip toes, holding her fingers in a funny way, not really walking but kind of skip walking like energy needs to explode out of her - but those are easily overlooked by people who aren't looking for anything.

I get a different Alice. It's like a flick switches as soon as we get in the car and are alone. She will start telling me what I can and can't say. She will demand I do things in a certain order, she will hit me, scratch me and get violent with me if I don't do these things. From the moment she gets out of school and is with me she needs to be in control.

Last week was particularly bad. They had a relief teacher, which I can only imagine caused her some kind of stress. The thing you need to know about Alice is that she holds everything inside. Very rarely will she breakdown at school if something has happened...no she saves that breakdown for me. So I get her in the car last week after letting her balance on the seats outside the classroom, which she has to do every day otherwise she will lose the plot. She had hurt her sister multiple times already and I could see the stress on her face.

I actually stood outside the car for a minute before getting in looking for some saving grace, like a bottle of wine or a kilo of chocolate that would get me through the afternoon I knew I was in for. Unfortunately nothing came a long and I took a deep breath and reluctantly got in the car.

Cue screaming. And kicking. And hitting. And even reaching forward to pull my seatbelt around my neck. What could I do? I couldn't stop the car, I didn't even know what her problem really was. I just kept driving and prayed that she would calm down. She didn't. The rest of the afternoon was much of the same, screaming, violence.

To this day I still don't really know what the problem was. By the time she calmed down enough to talk she didn't want to talk about her day.

To be honest when she acts like that I want to get down on the floor and have a meltdown alongside her. Most of the time I don't feel angry - just devastated that she is so upset and stressed that she has to scream and hit it out, that nothing I can do will calm her down and she just has to work through the rage.

No one ever sees that side of her. Only me. Her early intervention teacher was the one that told me I was her safe person. She said that Alice only acts that way with me because she knows I love her, that I will never leave her, that she can hit me and kick me and scream at me and I will never leave her and never stop loving her.

I get it. I do. School is hard, she's been pretending and fitting in all day and when she hops in the car she knows its safe to be herself. I'm her safe person. We all have one don't we?

But geez...it really sucks some days. 

Life after an Autism diagnosis...

So what is life like after an autism diagnosis? Pretty much the same I'd say.

It has been 12 hours and 30 minutes (not that I'm counting) since we were told by our paediatrician that she had no doubt in her mind that Alice has autism.

I suppose at that moment in time I should of felt like crying? There were tears, but they were more tears of relief, that I didn't have to fight, that my worries and concerns about Alice have finally been validated. I felt like screaming "HA! TOLD YA!"

To be really honest I hate the label. I hated calling my parents and telling them that Alice is now technically autistic. I hate the stereotype that they had in their head, that most people have in their head. The reality is when the paediatrician stated that Alice was on the autism spectrum Alice didn't magically turn non-verbal or start sitting in a corner rocking and humming....she is still the same girl that woke up this morning and asked for a cuddle, still the same girl who was so excited that her Daddy was staying home today. The only difference between before the autism diagnosis and after is that she now has access to much more support and therapy that will help her reach her full potential. And because of that I feel relief. I feel thankful. I know that because of this diagnosis she will get help and support and her life will be better.

I think if she had of been "officially" diagnosed earlier it might of been harder, perhaps I would of grieved more. But we've been dealing with her needs for so long now that it doesn't matter any more. In fact, I feel closer to her, more appreciative of the little things she does, more in love with every single one of her little quirks, more in love with her as a person. I am left wondering how much more she will teach me about life, about myself.

So what's the next step? What do we do with our now "officially" autistic child? Well...we went to the park....

All About Alice

This is Alice. Our beautiful blue eyed Alice - she is so special to us I thought a whole blog post dedicated to her was necessary.

Alice is stubborn, fearless, happy, excitable, loving, unstoppable, intelligent, passionate and so much more.Alice loves cars, dinosaurs, barbies, computer games and being outside.  The best description of Alice is to use a name one of her friends at early intervention has given her, she calls her "Rainbow Alice."

Alice also struggles. Currently Alice is diagnosed with speech language impairment, this may change (next week actually) as we go back to the developmental paediatrician's office armed with reports from teachers and speech therapists to hopefully get a diagnosis of PDD-NOS. For those not in the know this is best described as atypical autism. Meaning there are some traits/tendencies present but not enough to get a classic autism diagnosis.

Alice was born in November 2006 and named after her Great GREAT grandmother who was still alive and was able to know Alice for 2.5 years before passing away. She was a happy baby - but she was very hard to handle at times. A year ago if someone had of asked me if she showed delays in her first year of life I would of said no way. She babbled, she crawled she loved interacting with us and playing with us.

But now I have Madeleine who is almost one year old herself and I know that Alice was showing us signs that something was wrong from as early as 6 months. Just tiny things, things that a first time mum wouldn't notice. She never put her arms up for me when she was scared or emotional. She had no stranger anxiety, didn't seem to care who was looking after her. I swore that she babbled and she did say "bub" and "Mum" and "dad" but nothing compared to Madeleine. Madeleine has a constant stream of babbling words. With Alice it was random and not often and I remember never being able to catch it on camera.

It wasn't till Alice was two an a half years that we decided to get therapy. Our GP told us just to "wait and see" and well...I'm not really the kind of "wait and see" person.  We went straight to a speech therapist and began working with Alice. A lot of it was changing how we spoke to her. We started putting her toys up higher, giving her drinks with the lid closed or snacks in containers that we knew she wouldn't be able to open, all in the effort to get her to ask for help. Not that she didn't try and do it by herself. I remember one day I handed her a container of grapes. She took it off me and went into her play room - where she sat for half an hour trying to open it by herself. Eventually she came back to me, but she didn't look too pleased about it. Matt and I became her voice, we would use one word sentences to describe everything "tree" "sky" "water" "ball." I would say within about a week we had progress. This has been the same with all her therapy, she catches on pretty quick. Her speech definitely exploded after speech therapy but she was still way behind. She developed echolalic speech where she would echo everything we said word for word perfectly, most of the time without understanding what she was saying or what we were asking of her. Eventually she started to use that echolalic speech as a type of self teaching tool. Like self talk. It went from echoing everything to just echoing things that she didn't understand. Questions mostly, it was as if she was giving herself extra processing time by repeating the question. If you asked her "Do you want a drink of water?" She would say "Do you want a drink of water?" *pause* "Yes!" To this day she still does this with things she doesn't quite understand.

She had trouble learning yes and no, trouble with pronouns "you" and "I", trouble asking for help, trouble speaking up at daycare. There were no conversations with Alice - unless it was something that interested her or something functional she wouldn't care. She couldn't answer what her name was, how old she was or anything abstract like that. Toilet training was not even an area we could look at.

At 3 years old she was still in speech therapy and someone recommended an Early Childhood Development Program for her. Run through QLD state special schools it is for children 0-6 years of age with disabilities including speech, physical and other conditions like autism. Alice was accepted and commenced going there in July 2010. She went two mornings a week for two hours. She was in a class with two other little girls and two teachers. I was so nervous the first day - but this place was amazing. Massive playground, dedicated teachers and other parents who knew exactly what we had been through. Finally we had some support and help.

Over the past two years Alice has developed in leaps and bounds. She was finally toilet trained at 4 years of age. She can now tell us things that she did during the day, although at times its like drawing blood from a stone. She has fortnightly speech therapy sessions and we did do some music therapy. She is now in Prep and doing dual placement with the early childhood development program. Three days at Prep and two days there. At the start of the year she couldn't write her name, didn't know any of the alphabet and now she can write her name and knows a lot of the alphabet and the corresponding sounds. She will hopefully be transitioning into full time prep at her school by the end of Term Two.

We are so proud of her. She still has difficulties though - she is drawn to the more socially inappropriate children in her class, often copying their behaviour. She has trouble paying attention and asking for help. Socially she struggles - sometimes she is over social and other times she uses inappropriate methods to gain attention from her peers. She seems very confident - because she is quite loud, but she is also emotionally fragile. She is often unable to express when she is sad until it reaches boiling point and she just has an emotional meltdown. She keeps herself together while at school but when she gets home her behaviour will become erractic and hard to handle. She loves her baby sister but has a very short temper with her.

So why am I sharing all of this? Two reasons actually. Firstly I've never really written down her story, our journey, like this and it's quite theraputic. Secondly, maybe sharing her story will help other families out there. Maybe a mother who is concerned about their child's development will stumble upon this blog and feel not so alone.

What I don't want is pity. I never have. Do I wish that we could make things easier for Alice? Yes. Easier for us? Yes. Would I change Alice? Not on your life. She is our Alice and she is perfect.

So for now we will continue this roller coaster ride. I will continue to fight every day for her, so that she can develop and grow and feel safe and loved. My little blue eyed girl is only 5 years old...and she has taught me so much about life.

She is our princess and we love her.

Let there be blogging!

It's 2:30am and I decided about half an hour ago to start a blog.

Yup, that's an introduction to me in one sentence. My best ideas come when I should be sleeping.

I had actually been thinking about starting a blog for quite a long time, you see I like to talk, a lot. I have a lot of different things going on in my life and I like to verbalise them - don't care who too. For the most part my beautiful partner/fiancée/father of my children Matt gets the job of listening to me. I realised it was time to look for other victims tonight when he fell asleep on me mid conversation....we weren't in bed or anything, just talking in the lounge room....guess that doesn't bode well for how entertaining this blog is going to be, but try to bear with me I actually think I  have a few interesting anecdotes to tell.

Words to describe me - stress head, clean fanatic, wine lover, pink girl and mother.  

                                                                                                                 

These are my two girls, Alice is 5 and Madeleine will be 1 in July. I used to think life was pretty good, I was pretty content. Then I had these two little bundles of pink and I realised life was nothing before them.

I had Alice when I was 21. Matt and I had only been together a couple of months. She was a happy surprise, but boy did she change our lives. I don't remember much of the first three months after she was born...what with all the screaming (me not her) toy throwing (me not her) and not sleeping (both of us) it's a bit of a blur...but somehow we made it through it.

This blog might focus a bit more on Alice than on Maddie. Mainly because Alice has had many challenges in her short life. When she was 2 years old we started to notice she was different from other children her age. She was barely saying anything, a few random words and nothing consistently. My background is in childcare and I knew something wasn't right and so started a  roller-coaster of doctors, paediatricians, speech therapists and early intervention methods. We are still riding that roller-coaster and I don't think we will be off any time soon.

Alice has started school this year though and is loving it. She is the best person I know. Happy, loving and a lover of life. You cannot help but smile when you are with her. Maddie is much more sensitive than her big sister but she still has that cheeky smile, is into everything and has just decided she MUST start walking at not even 10 months old.

This is Matt and I. He is my rock. He knows how to calm my worries (and I worry a lot) and keep me sane - well relatively sane. We have been together 6 years and we are getting married in September. I do like to keep busy so when I'm not cleaning the house, attending meetings/therapy sessions for Alice, spending time with the girls/family, studying my primary teaching degree I certainly have time to plan a perfect wedding...right? Right! If there's one thing I know how to do it's plan and organise.

If my words aren't entertaining I'm sure my slow descent towards insanity will be.