Wednesday 29 March 2017

Dear Teenage Self

Since going through the ASD diagnosis process with both L and O, I have begun to realise things about my younger self. Speaking with O's psychologist, I've become more aware of how I felt as a teenager.

And it is all making sense now - how I used to think, how awkward I felt, how little I understood about others behaviour and language, how badly I wanted to fit in....

When I said to O's psychologist that I had a hunch that perhaps I was on the spectrum, her reply was "I can spot an Aspie when I see one!"

Well, no need for a formal diagnosis then!

Knowing what I know now, would have been incredibly useful as a teenager and if I was able to write a letter and send it back in time to my teenage self to help that person get through life, this would be it......

Dear me,

It is called Aspergers.

Being a teenager with Aspergers is hard and unfortunately it will get harder but it will be all work out in the end.

You think differently and there is nothing wrong with that. Others say that you are weird but you're not. You're just different and that is okay.

Different is good and do not let anyone tell you otherwise.

Don't try to fit in, just be yourself. There are people who like you for who you are. Chances are, they are also struggling to fit in and trying to find their way in the world.

If others around you mock you, that is not your fault. They are the ones with the issue. They are the ones with the low self esteem. They are only trying to get you down to make themselves feel better.

As much as words hurt, please try not to let their words get to you. Let the words roll off your back like water rolling off a ducks feathers. This in itself is a skill to be learnt and it just takes practice.

Your anxiety, while not normal, is typically common in individuals with Aspergers. And guess what, others around you also suffer from anxiety, they're just better at hiding it. Ask for help, let people around know that you are struggling. You will get through it, but trust me it is easier when you have others helping you. Put aside your pride and ask for help, you will feel much better in the long run. The mask becomes much harder to maintain.

You struggle to understand social situations, emotional and non-verbal cues and that is also common with Aspergers. Look it up in the library and read as much as you can about Aspergers, you'd be surprised just how much there is to learn.

Yes some of the anxiety and the struggles you are experiencing are simply part of being a typical teenager, but most of it is being an Aspie. But in saying that, this isn't an excuse and you will need to learn how to cope and manage.

Keep in contact with those who are accepting of who you are and understand you. Their support is vital to your emotional well being. Seek out like minded people and form your own pose.

There are others like you - Temple Grandin is one. The classical musicians and the scientists who you admire are all thought to have Aspergers. These people did great things in this world. You too can and will do great things. Be proud of your achievements.

Keep aiming high, you will get there.

When you are older and have children, you will have an advantage as you will understand what they are going through and you will be able to assist them to understand the world around them. Long time family friends will tell you just how alike you and your daughter are and it all starts to make sense.

Life does get harder before it gets easier.

But you turn out fine, so please stop worrying so much, relax and enjoy the ride.

Wednesday 22 March 2017

Why being an advocate is hard but also rewarding.

I have always been one to stand for what I believe in and back people when they need me too. Even if the situation will put me between a rock and a hard place and potentially make life uncomfortable, I can be counted on.

Having two young children who are both on the spectrum has meant that I have become their advocate and I feel as though I am constantly between that rock and the hard place. And let me tell you, this advocate business can be brutal and it is hard. Really hard.

As a parent it is our job to make the decisions that ensure our children's health, well being and best interests are looked after. Add being an advocate to that and the parenting gig becomes a whole lot more complicated.

There are advocate agencies that can do all the hard yards for you but at the end of the day, they get to go home. They get to switch off and relax. Their invested interest in you and your family is purely a financial interest and not necessarily a personal interest.

Being a parent as well as my little superheroes advocate means that I don't switch off, not fully anyway. I am thinking 24/7 about how I can best help my little superheroes. It is much more personal and much more intense.

As an advocate you have to learn the jargon and talk the talk. You have to learn the correct terms to use when speaking with funding bodies. You have to try and predict your child's future needs. And at times there is a very fine line between accommodating your child's needs and enabling their helplessness.

As an advocate you have to make some pretty intense decisions. Decisions that could impact on my little superheroes future. Which funding body do we apply too? What type of therapy is best going to assist my little superheroes? What therapy provider can provide the best therapy for my little superheroes? What school to attend? Support worker or no support worker? Which specialist do we ask for a referral to? And the list goes on.

As an advocate people can become peeved at you very quickly and on a regular basis. I have one particular person at the moment who I am fairly certain is avoiding me and my phone number! I am sure that every time she sees my number come up on her phone she starts thinking "goddammit, not her again, what does she want now?"

Being an advocate does make you unpopular with some, it can make situations uncomfortable as you are there to fight for your child. It can cause pleasant conversations to escalate at a spectacular rate. At times I do feel like I am a bother, that I'm the overbearing, overreacting parent when I need to approach an agency or the school again. As an advocate you have to take things up over and over again and you do have to make calls and send emails that no parent wants to make. You have to question decisions that other people make for your children and this in itself can cause friction.

Being an advocate is tiring, emotionally, mentally and physically. I am constantly doing research into different therapy and sensory aids, making phone calls, sending emails, constantly evaluating everything. It is exhausting and I have to constantly remind myself to take time out for me.

Being an advocate feels like you have to break down barriers on a much too regular basis. It honestly feels like a minefield and some days it feels as though we take one step forward and three steps backwards. There is always a hurdle to climb over or a hoop to jump through. And then when you finally think that you have got it right, boom, the goal posts shift and you have to start all over again.


Being an advocate is also a very rewarding experience.

You get to meet and make friends with some fairly awe inspiring people. People who don't think twice about helping others. People who invest a whole lot of time into helping us because they genuinely love our little superheroes. These people become part of your inner circle and you can count on them. Their invested interest becomes a more personal one.

Being an advocate means that in some cases we have been able to set a benchmark for funding and others will benefit. We've done the hard yards so that others don't have to. They can learn from our experience.

Being an advocate means that I am able to pass my knowledge onto others who ask for help. We have the opportunity to educate others and to raise awareness of autism. Yesterday I took O to a fabric shop to purchase some fabric to make her sensory body sock. When the shop assistant asked what we were making with the fluro pink spandex, O and I were able to introduce her to a new concept and the shop assistant now knows what a sensory body sock is, how it actually works and the benefits of it.

Being an advocate means that I have seen my little superheroes make the most amazing progress. L has come so far in such a short amount of time. And I love watching O maturing in how she handles different situations and how she is now wanting to help her friends who suffer from anxiety.

As an advocate I have become mentally stronger, tougher and more stubborn, if that is possible! I have learnt more about myself. I have learnt that I am capable of handling tough situations. I have learnt that no matter how low our journey can become, I will always dust myself off, get back up and keep going.

It would be easier and quicker to give in and I can see why people do just that. But then what sort of future would that leave for my little superheroes?

What sort of an example am I setting to my little superheroes by giving in?

I want my little superheroes to realise that it is okay to fight for what is right. O has already started doing that by standing up for her friends when they are being left out or excluded. I want my little superheroes to believe that they are capable of so much more. And that even when it is hard or scary or exhausting, that they are capable of going on.

Why do I continue being an advocate? Because that is my job as a parent. Every child deserves the best and every child needs an advocate until they find their own voice. It is my job as a parent to ensure that my little superheroes voices are heard.

Being an advocate is hard but I will keep being the advocate for my little superheroes for as long as they want and need me to. I wouldn't change anything for the world.

Being an advocate is hard but the rewards far outweigh the difficult moments.

Sunday 19 March 2017

I have a dilemma.............

We have a slight dilemma at the moment at superhero headquarters, O has started using her ASD diagnosis as an excuse for almost everything. "I don't like noise because.......," "I can't calm down because......," "I'm using this voice because...," and so on.

It is the one thing that we were concerned about occurring, that either of the little superheroes would see their ASD diagnosis as an excuse for not trying their hardest or use their ASD diagnosis as a reason to get out of doing something or for certain behaviors.

Using a disability or a diagnosis as an excuse is one of my pet dislikes. Oh I can't do that because I have x, y or z. This really doesn't sit well with me.

I went through high school with a young lady who was blind. Her sight impairment did not stop her from learning to play the bass guitar - she was simply amazing. A music teacher would give her the sheet music translated into braille and she would be able to learn it in one go. Her sight impairment did not stop her from graduating year 12 at the top of her class. In fact when she graduated, she received the highest marks out of all the year 12's in the state for that year! This young lady could have easily said that she couldn't do it, but she didn't.

A disability shouldn't stop you from doing your best, you may just need to try harder or take a few detours to get to where you want to go. A disability is a reason why an individual may exhibit certain behaviour or take longer to get to where they want to go, but it certainly does not excuse their behaviour.

An ASD diagnosis explains why both my little superheroes have meltdowns however they both need to learn that meltdowns are not an acceptable behaviour.

So what can we do with miss O?

Well, generally, and it sounds quite harsh, but we just ignore the "because I have autism" part of the statement. By acknowledging that part of the statement we are reinforcing her beliefs that autism is going to stop her from trying her hardest.

Both my little superheroes, at times, struggle when there is a lot of back ground noise however noise is a part of life. Throughout life we all come into contact with noisy environments, they are not something that can be totally avoided.

What we can do is provide the little superheroes with strategies that they can use to reduce the impact of various situations on them. We want to be able to empower them both with skills and strategies that they can take with them through life.

We talk constantly with both little superheroes about what they are capable of doing, of their strengths and we try very hard not to focus on their weaknesses. And we ask others to do the same.

We don't make a big deal out of their ASD diagnosis unless it is absolutely necessary. For L this is
usually when his ASD becomes a safety issue. For O it is usually when we are explaining her anxiety.

In the last few weeks we have had many tantrums, as opposed to meltdowns, when O has disagreed with what we've had to say about her autism and the fact that it isn't stopping her from trying her hardest. It is her fear of failure which then sets off her anxiety. This is something that we are working very hard to help O to overcome. And I am sure that there will be many more tantrums to come before O comes to the realisation that she can overcome her fears.

I can see that in some situations it would be easier just to say "nope can't do it, not even going to try, I give up." But this is not a scenario that you will see in superhero headquarters. I will always encourage my little superheroes to try their hardest, to test their abilities and reach for the stars.

Their ASD is not a weakness, it is just a different ability.

Thursday 16 March 2017

Little Superheroes and their friends....

Just recently I have been able to see the interactions between my little superheroes and their friends in various situations and it has truly been wonderful.

O has always been a social little superhero, she easily makes friends. No matter where we are or where we go, she will be the one that always says "I made a new friend." She quite often won't know their name but she will happily play with them. O doesn't always understand social situations so keeping a good circle of friends has always been the tricky part for her.

L on the other hand has always struggled to make and keep a good group of friends. It is only in the last 16 months since L has begun to understand others emotions that he has really leapt forward in leaps and bounds on the friendship front.

So here is a letter to the friends of my little superheroes.

Please don't ever change. You all bring so much joy to my little superheroes, they are both so happy to talk about their friends at school and at OSHC.

You just get them. You understand that they are different, you've embraced their unique differences and yet you overlook their differences and only see what you have in common with each other.

I hope that you know just how much your friendship really means to both O and L. Even though they don't always express their gratitude to you, they really do love spending time with you. I can see this when they scan the classroom, the playground, the OSHC hall for you and their faces light up when they see you.

When you play together, my little superheroes personalities shine through, their anxiety lessens, they can be themselves and I am able to get a better look at who they are and who they will be in the future.

When L is having a rough day, you understand and don't push him. You let L come to you when he is ready and there is no judgement.

When O is struggling with the noise around her, you remind each other to lower your voices and
when she is struggling with her anxiety, you are there for her, always reassuring her that everything is going to be okay.

Each of you have so many different qualities and you are all delightful little humans.

And when you have questions about my little superheroes behaviour, you are kind towards them and it is obvious that you really want to know the answers so that you can understand them. Then when you find out the answers, you take it in your stride and take the information on board.

Young H, you make me so happy about how protective you are of L. When L hurt his thumb a few weekends ago and Daddy superhero joked about cutting L's thumb off, you put a protective arm around L and said "no he needs his thumb, he just needs a band-aid." H you show compassion beyond your 5 years.

And young R, you are such a character and you are just a gorgeous little boy. You understand L when he is having a rough morning and you just let him be. You let L crawl all over you and you never complain, or not out loud anyway! You let L give you a hug goodbye every time he is leaving, thank you!

L, you seem so mature beyond your 5 years. You've always looked out for my L at kindy and now at school. You are the one that reminds L that he needs to put on sunscreen and his hat because "remember no hat, no play L!" And then when my L didn't want to put his hat on, you sat under the verandah with him to keep him company so that he could look at what you were holding.

Little miss G, you see L for who he is and this makes me very happy. "But he looks like me, he's normal." Last year, L always wanted to make sure that you were okay when you were having a rough day. He used to become very worried about you and he misses seeing you every day. "Where my G?" he asks on a daily basis!

Little miss H, I am told by everyone, that you have been taking L under your wing at school and at OSHC to the point that O has been getting upset at home "but L won't play with me at OSHC, he just wants to play for H!" But O is also secretly pleased as it means that she can play with her friends!

Little miss P, did you know that L is keeping an eye for you at school? L tells me "I look for P and I make sure she okay!" You two may not have much to do with each other, but L remembers you!

Miss L, when O was having a very rough morning at school a few weeks ago, you really stepped up without being asked. I'm not sure if you realised just how much you helped O to calm down. O still talks about how much you helped her. Did you know that the play dates that you two have had these last couple of weeks are the first ones that she has had, that I haven't had to come and collect her just after they've started. You are also the first friend that O has felt comfortable to stay with at your house without me being there. That is a huge thing in regards to O's anxiety!

Miss E, you and O are so much alike and you both just get each other. You have so much in common and I truly think that is why you two get along so well. O is always concerned about you when she hears that you've had a rough day.

Miss C, I think O has found a mother hen to look after her and I love that. You were the one to remind everyone to keep their voices down when O was struggling with the noise level. Thank you for taking that information on board.

To G, G, T, G, G, M, A, A, A and S (O has lot's of friends whose names start with the letter G and the letter A!) O may not remember what school work she does each day but she is able to tell us who she played with or who kept her company or who she has helped when you've been having a rough day. She values each and every one of you.

Master W, you are the only male friend that O constantly talks about. She loves playing games with you because she understands the rules! Thank you for accepting who she is and making her feel welcome at school when she first started in 2015. You don't know how much you assisted O to settle into the new school environment! You were honestly a huge help!

The fact is, you all probably have no idea just how much both O and L will need your friendships in the coming years. Right now being friends is relatively easy. You all have your ups and downs, but staying friends is relatively stress free. As you enter upper primary and high school, friendships can become stronger but they can, at times, also become harder to maintain.

As you become older, peer pressure begins to come into play more and some of my little superheroes mannerisms that are okay to you now, may begin to cause embarrassment. Other children may make fun of my little superheroes mannerisms and at some stage you may need to chose whether you want to stand by O and L or bow to the peer pressure from others.

I can't make promises for what will happen in the future but what I can promise is that you will always be the ones that O and L will remember and seek out. Whenever there are new faces around them, you are the ones that O and L feel comfortable with. O and L will always have your back and they will stand up for you when you need someone to stand up for you.

You all show compassion and a level of maturity that is beyond your young years. I hope that you all keep thinking long and hard about what it means to be kind. I hope that you all keep choosing to do the right thing especially when the feelings of other children are at stake. I hope that you all keep being yourselves because you really are all beautiful children. You all have very kind hearts.

I know that I have doubted my parenting skills at times and I am sure that at some stage your own parents have probably doubted their own skills too. But your Mums and Dads are doing a wonderful job at raising compassionate kind thoughtful children.

My little superheroes friends, thank you for being you.

Sunday 12 March 2017

A visit to the beach

Each year Sculpture by the Sea, Cottlesloe is held on the gorgeous Cottlesloe Beach. We all love the beach and Daddy superhero and I love art, so it combines all our interests. Every year we make plans to go but never actually end up getting there, we're always way laid with other plans or prior commitments.

After baking bread this morning, we decided that we would brave the nasty looking storm clouds and do a spur of the moment drive to Cottlesloe. All the way to Cottlesloe we heard the obligatory "are we there yet?" and "how much longer?" When we arrived I am glad that we did make the drive.

When we got out of the car, both O and L saw the beach and were off. And then they saw the tee pees, I could see their brains ticking over as we walked down the pathway as to what to do first. Ocean or tee pees!

O and L jumped straight into what looked like a bean bag before realising that they weren't that comfortable after all. They were then off to the water's edge to collect shells and play in the water.

We slowly started meandering down the beach, Daddy superhero and I tag teaming to look at the sculptures while the little superheros played on the beach. The sculptures didn't disappoint, they were amazing, some even caught the attention of my little superheroes.

L was very excited when he heard and saw some Black Hawk Helicopters "Just like cousin Mikeys!" Obviously not part of the exhibition but still very impressive.

But in the end the beach, water and shells won out. The little superheroes had a ball. They dug holes and channels, they built sandcastles, they chased the waves and collected shells. They had sand in places where sand probably shouldn't go, but they had fun.

L was convinced that there were BIG sharks in the water and collected a handful of sand that he carted down the beach as he desperately wanted to feed the said sharks!

We were even able to have a family photo taken while we sat on one of the sculptures, although convincing O that we were allowed to did take a while!

And thankfully the rain held off until we got back into the car to drive home.

If you ask L what the highlight of the impromptu drive was? Hearing the shark siren as we walked from the car to find some lunch but he was very disappointed that he couldn't see the sharks! Next time buddy, next time!

Welcome to Superhero Cooking School!

Both of my little superheroes have aversions to particular foods but we are very fortunate that they both are reasonably good eaters.

Whether we are cooking in the kitchen or outside on the barbeque, one or both of the little superheroes can be found hovering around wanting to help mix or offering to be a taste tester.

From a young age O has always been interested in helping in the kitchen and she's always expressed her desire to learn how to cook. She received a kids cook book for her birthday a few years ago and she is constantly picking recipes out of it to cook with us.

L has always been intrigued by cooking shows and he just loves food in general! Other than superhero shows and movies, he will sit and watch a cooking show!

Just recently we've been watching a children's cooking show that is based in the US. After watching an episode L said to us "when I get big, I go on a cooking show." He has big ambitions which is wonderful. O then chimed in and asked when could they help to cook dinner.

So on Friday afternoon on the way home from school, Daddy superhero took both little superheroes to the shops and together they picked out the ingredients to make several meals over the weekend.

On Saturday I was lucky enough to have a night off from kitchen duties as Daddy superhero, L and O took over and made hamburgers.

There were some interesting conversations happening around the dining room table as they made the hamburgers:

"How is mince chopped?" and "Why can't I eat the egg shell?" and "Ooh that feels disgusting!" We need to refine L's technique for cracking an egg, there were lots of little bits of egg shell that needed to be retrieved from the mince!

Both of my little superheroes had a go at using the vegetable peeler and the grater and no one lost any fingers!

Mixing all the ingredients together with their hands got lots of "ooh disgusting" remarks from L!

The end result were very delicious hamburgers which O picked at and L refused to eat! If we had mushed the hamburgers up and called it mince, they would have eaten it for sure!  Food aversions, oh well!

This morning Daddy superhero was woken to a little voice saying "It's bread making time!" O couldn't wait to make her bread, she got stuck straight into it so I missed taking photos, was my turn for a sleep in!

Nothing better than a fresh loaf of bread for breakfast!

When Daddy superhero asked L if he wanted to make his bread he replied with "no, wait for Mummy!" and I was promptly woken up.

As L was pouring the flour into his bowl, he dropped the bag and a huge flour cloud rose up. L's response was "Cool, I like a scientist!"

Both of the little superheroes were fascinated by the rising dough! They wanted to know all the ins and out of how yeast helps the dough to rise.

L's bread looked great as well but no photos were allowed. Both the little superheroes did a wonderful job with helping with the hamburgers and the bread making. Apparently the next recipe that O wants to have a go at is a chocolate sponge cake.

And throughout the whole process, Daddy superhero didn't lose his cool once!!