Amazing

Very often I am told what an amazing job I do with Alice. I am not saying this to brag it's simply what I have been told, by family friends, teachers and therapists alike. I don't usually accept the compliment very well. It is nice to hear - especially after a hard day, a meltdown, a day when Alice has mentally checked out.

Truth be told I don't think what I am doing, have done with her, is amazing. I am just a mother, doing what she needed to do for her child. Parenting a child, even a child whose development is normal, is never an easy task. I know many amazing mothers, some have children with bigger hurdles than others, but they are all amazing in their own right.

I certainly don't feel I can accept all the credit either. Could I have done this without the continuous ongoing support of my husband? No. I don't think I could be as "amazing" as I am without him. I think I would most probably be huddled on the floor in a big heaving mess without him.

He is like the backstage crew in this crazy show of ours. He isn't the lead actor. He isn't at all the meetings with therapists and teachers. He won't always speak up about Alice's issues when people ask us questions. But he's there. In the background, holding me up, holding Alice up and providing us with the unwavering support we need in order to keep the show going and he's amazing.

I don't know many things for sure, but I know about amazing fathers. I had one myself growing up. A father who I knew adored me, who always had time for me, who made me feel special. Thank god my beautiful girls got an amazing father too. Especially Alice. Matt is truly the amazing one with her. He accepts her for all that she is, more than I do if I'm honest. I feel so much frustration some days with her...why can't she just stand still, why can't she walk normally, why does she have to dance around all the time, why won't she just answer me? Matt...he looks at her and you can tell he is just in awe by how her brain works. I really truly feel that not just any father could parent a child like Alice and do it so well.

He is the same with Maddles, he finds it so easy to interchange with them both. While I struggle to parent each one because they are so different, Matt embraces it. He is our rock and I don't know where we would be, where Alice would be, if we didn't have him. I am certain he doesn't get the credit he deserves. It's hard for him too, it's hard watching his daughter struggle with certain things, it's hard coming home to a wife who is sometimes so mentally drained she doesn't really have time for him. It's probably even harder yet that he can't attend meetings, can't talk to the teacher daily about how Alice is going - he hears all his information second hand from me. I know that would drive me insane and I know he loves her just as much as I do.

So this is me, not just sharing the credit, but handing it over. I couldn't do what I have to do every day without everything he does for me and for the girls. Here's to amazing parents, whatever the situation of your child, it's a hard slog. More specifically this blog is dedicated to amazing fathers - especially Matt. Our rock.

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.