Saturday 31 December 2016

Dear Sarah

Dear Sarah,

As you know L has Autism and sensory issues. One of his major issues that he has always struggled with is people touching his hair.
We found this out the hard way.
During his very first haircut at 18 months of age of age, L sat very still in the chair but he had a pained look on his face. We assumed that he was uncomfortable as it was his first haircut. He tolerated the experience but he clearly wasn’t comfortable.
With each subsequent hair cut after that, it became a battle, to the point that one of us would need to sit in the chair with L on our lap. We would need to pin him down so that the hairdresser or barber could do their work. Appointments were very loud.

In the past an outing to the hair dresser would take anywhere between 3 and 4 hours and would be extremely emotionally taxing on all of us.
L has also never liked us brushing his hair. This would lead to massive problems as his hair is quite curly. As you are well aware curls and no brushing means knots and dreadlocks. Knots and dreadlocks meant hair cut time.
We then purchased a hair trimming kit and tried to cut L's hair at home. We were able to trim his hair as he was playing in the backyard. L then had a series of slightly dodgy haircuts.

Then we found you.
We found your salon quite by accident. Daddy superhero needed a haircut and afterwards he came home and told us all about you. During his appointment, you two had a conversation about ASD and ADHD and you seemed to really know your stuff. You weren’t judgmental when Daddy superhero told you about L’s sensitivities to people touching his hair. You seemed to understand.
It just so happened that L was due for another hair cut so we thought, why not let’s give a trip to the hair dressers another shot.
We made an appointment with you for when the traffic through the shopping centre should be low so that we’d get off to a good start. The minute Daddy superhero and L arrived in the salon, you started engaging with L. You tried to talk to L about superheros but you made the mistake of saying that you preferred Superman over Batman. As you now know, Batman is the best!!
But L sat in the chair. By himself. Without being bribed.
L began to relax, he didn’t squirm around and he became comfortable enough to actually let you trim his hair. L didn’t fight you. And when you had finished, he looked quite the little spunk.
L mightn’t have said a word during the appointment, but he sure told everyone about “his Sarah” when he and Daddy superhero arrived home. Why? Because you engaged with L about his all time favourite thing. Superheroes.
You’ve definitely made an impression on L.
You’ve built cubby houses for L under the bench when you’ve been cutting Daddy superheroes hair so that L could escape the noise. You talk to L about superheroes. You’ve shown L how to put special cream in his hair so that he will have spiky hair, something that I still get in trouble with because I don’t do it right like Sarah! You explain what you are going to do so that L knows what to expect.
You’ve also made a very good impression on O. You’ve ensured that you have included her in conversation when she has been in the salon. O was very impressed that you pampered her during her appointment.
Your level of patience and understanding of Autism and sensory issues is wonderful. You are patient when L does wiggle around and you understand how to work with him so that he won’t become uncomfortable. You understand that when L doesn’t want to talk that it isn’t personal. You just give him space and time to start engaging with you. You don’t push the issue.
L now lets us brush his hair. It might not be every day but the fact that he will willingly let us brush his hair, that is a huge improvement. He tells everyone about “his Sarah!”
We never expected the level of service that you provide to us as a family. During every appointment you go above and beyond to accommodate us. Your level of service is exceptional and I thank you.
You’ve made a huge difference to L and O. Hair appointments are no longer painful experiences. Now if only we could get O to brush her hair every day!

Thursday 29 December 2016

What is Sensory Proprioception?

If you’re like me and new to this Autism journey, you probably read the title of this blog and thought “what the hell is that?”

Let me explain, but you’ll have to bear with me as I will have to go back to the beginning.

From a very early age L used to love engaging in rough play. When I say rough play, I don’t just mean rolling around on the floor bumping into the occasional object. He would go up to O and other children and start hitting them for no reason. L would seek out rough and tumble play but take it one step too far and would often hurt himself or others. He would engage in rough play with myself and Daddy superhero and start head butting us or squeezing our arms and legs to the point that it would really hurt.

L is and always has been a sensory seeker. He is constantly moving, jumping, bouncing, spinning, pushing things, pulling things and running. He’s an insatiable bundle of energy. He often uses way too much force when doing simple day to day tasks, opening and closing doors, moving toys around and hugging us. He’s always been loud, he loves crashing into objects and people.

L has always chewed on and mouthed objects, he still does occasionally. He is constantly bumping into or pushing people, including when he is asleep. He constantly seeks out physical touch in the form of hugs and standing or sitting super close to people. L loves tight hugs and heavy blankets.

He would never hurt us and other children on purpose, but he could never understand why O, his peers and us would be upset with him. He never understood why he had to say sorry. And when he did say sorry, it was just a word, there really wasn't any empathy behind it.

We always thought that L just didn’t know his own strength. We immediately started teaching L the “right” way to play. We started teaching him who he could play really rough with (Daddy superhero) and who he couldn’t (everyone else!)

From the age of 18 months until very recently he would constantly and randomly fall to his right, whether he was sitting or standing. This was of a major concern to both us and his pediatrician to the point that we had appointments lined up with a neurologist to try and determine the cause. And then he stopped falling to the right as quickly as it started.

It wasn’t until this year when we were talking with one of his therapists at the early intervention centre and we mentioned his apparent lack of knowing his own strength and what we thought was the relation to his extremely high pain threshold.

We had always assumed that because L’s pain threshold was so high, he therefore didn’t know when he was hurting others because he thought that everyone didn’t feel pain.

And wouldn’t you know it, we were completely wrong!

One of L’s therapists started talking about Sensory Proprioception and the term went straight over our heads. We must have looked like goldfish standing there with our mouths open and a stunned expression on our faces.

The therapist then explained in very simple language that when you or I hit something we can feel the force when we connect with whatever we have hit. We know when we’ve touched or hit something too hard or too soft or just right. L doesn’t. To receive the same sensation that we receive when we touch something lightly, L has to hit the same object a lot harder. It’s not that he doesn’t know his own strength, he doesn’t have the same level of receptors that you or I have.

Before speaking with L’s therapist I had never heard of sensory proprioception. So when I got home I did a little research, and this is what I found out.

You should be familiar with the five senses – sight, hearing, smell, taste and touch (tactile.) Well, our bodies have two additional senses that we receive input through. I knew about these, I just didn’t know that they had names. I mustn’t have been paying attention in Biology and Anatomy classes at University!

The first is the Vestibular Sense, or the movement and balance sense. This sense gives us information as to where our head and body are in space. It allows us to stay up right while we sit, stand and walk. It lets us know which way is the right way up. It helps us to keep our balance as we move.

The second little known sense is the Proprioception Sense, or body awareness and position. Put simply it tells us where our body parts are in relation to each other. It gives us information on how much force we need to exert in certain activities, for example how much force we need to exert when cracking open an egg so that we don’t crush it in our hands, or how much force we should be exerting when hugging someone.

We know that our eyes and ears are constantly sending information to our brain about what we see and hear. Our muscles, joints, ligaments, tendons and connective tissues are also constantly sending information to our brain, but on an unconscious level.

Humour me for a moment. If you close your eyes right now, well perhaps not right now but after you have finished reading, you’d be able to tell exactly how and where your body is positioned. Perhaps your legs are crossed or maybe your hand is supporting your chin as you try to stay awake while reading this! You didn’t have to think about this, you just knew. This is the proprioceptive system in action.

The proprioceptive system is primarily located in the cerebellum and it works closely with the vestibular and tactile systems.

We’d ordinarily gain proprioception input when we engage in resistance type activities like pushing or pulling activities or activities in which we’re actively engaging our muscles like when we're exercising.
When the proprioceptive system doesn’t function correctly it can be extremely difficult for an individual to sit still and stay focused. For a child it can be difficult for them to gauge how hard they can play with other children. It may even make it difficult for the individual to remain calm.

We knew that L was a sensory seeker and we now know that this is because he is under responsive to proprioceptive input. All the things that L loves doing are common indicators to an under responsive proprioceptive input!

All of the activities that L loves to do are assisting him to increase the input in his proprioceptive system. All the input is assisting him to understand just how hard he can play with others, how much force he needs to exert when doing certain activities and tasks.

I'm now starting to realise that some of the activities that O engages in are also because she is seeking proprioceptive input. O is constantly chewing on objects - toys, necklaces, clothes - and she says that she does to help her to concentrate. It's all starting to making a lot of sense!

And one of the many things that we as parents now need to do, is assist O and L to gain proprioceptive input through therapy based activities at home.

We do this by encouraging them to draw and play games while sitting and laying in different positions – sitting up with legs crossed, sitting at a table, sitting upside down on the couch or laying down on their tummies. They can gain input through using different fidget toys and playing with playdoh. We have different types of pillows and blankets that the little superheroes can stack, climb on and hide under.

We actively play rough and tumble games with L and we encourage them both to bounce on the trampoline in the backyard. But at the same time we're reiterating to L who he can and can't play rough with.

When L and O are particularly agitated, we do deep tissue massage by squeezing their legs and arms to try and calm them down.

We get L and O to help with heavy work activities around the house like carrying the shopping in from the car, helping to pack away around the house, lifting the washing into and out of the washing machine, watering the vegetable patch with a full 3L bottle of water, wiping the table after dinner.

It sounds bizarre but all of these activities not only provide proprioceptive input but they also help both O and L to become calm. The activities are giving them extra input to balance out their little systems.

We've always encouraged both O and L to engage in these activities, but now that we know just how much they are helping both the little superheroes, we encourage them even more!

It truly is amazing just how many common every day chores and activities around the house can be turned into therapy activities! I'd never really understood how occupational therapy worked, I do now!

**** If you believe that you or your child may benefit from activities that increase proprioceptive input, please speak to your GP or pediatrician for advice.****

For more information on the Proprioceptive Sense head over to these sites!

SPD Australia
Sensory Smarts

My little superheroes getting up to mischief!

L and O found a stash of temporary tattoos this morning and boy were they excited!

Although I am thinking that perhaps I shouldn't have shown L how to apply said tattoos. O knows how to apply them, L cottoned on pretty quickly!

Ah, what the heck, it's the holidays and we have 4 weeks to get the tattoos off before the little superheroes go back to school!

The conversation between O and L as they were sitting in bathroom went something like this.

L - Hey sissy, I got tattoos!

O - I know, can we share them? You can have a Monster High one!

L - No, I just want Transformers but you can have some!

O - We're tattoo masters!

L - Nope, I tattoo king!

They had fun!

Wednesday 28 December 2016

School Readiness

School readiness has different meanings to different people. For some it means having their child being able to recognise their own name or knowing the alphabet, numbers and colours or their child being able to write their name.

For us it simply meant having an effective and smooth transition into the school system for both O and L.

Towards the end of the 2016 school year a lot of parents of special needs children were already looking towards the beginning of the 2017 school year and what they needed to do to have a smooth transition to the next school year.

For most parents of neurotypical children it is usually simply a case of filling the school book list, buying new school uniforms, school bags, lunch boxes and shoes.

Throw in a special needs child and suddenly everything becomes a little more complicated and at times a lot more expensive.

There’s the liaising with the school to find out your child's teacher for the following year, finding out who the teacher aide will be if you’re entitled to one, trying to get photos of the new teacher, aides and classroom to complete a social story so that you can introduce your child to the idea over the holidays. Some parents will want to organize transition time in the new classroom before the end of the school year. There's updating any sensory toys that your child may require.

Recently quite a number of parents have started asking me how we prepared ourselves and our children for the new school year. Yes it is 4 and a bit weeks away but you can never be too prepared.

These are the main things we make sure that we do in the lead up to the end of the school year.

Aide Time

The school that O and L attend have been fantastic this year. The school officer has been instrumental in organizing aide time for L. Without his Teacher aides, thank you Kate and Leanne, I honestly don’t think that L would have achieved what he has at school this year.

L’s class was lucky enough to have their teacher, Maria – who is amazing, a teacher aide, Leanne – also amazing, and a special needs teacher aide – Kate – again, amazing! It meant that L received one on one time in class. It meant that there were three pairs of eyes keeping an eye on my little runner. It meant that L felt settled in class and that he belonged there. It meant that L joined in on class activities, instead of just doing his own thing. It meant that L has learnt a whole new set of skills and is ready for full time school next year.

When I was going through L’s end of year learning journal, I honestly had a tear in my eye. Comparing the level of work that L was doing at the start of the year to that at the end of the year, WOW! He has made the most amazing progress.

I have had parents in the past tell me that they didn’t want their child assessed because the school will get money and their child won’t see it so what is the point.

Yes the school receives funding, but it is your child that benefits. I do not want either of my children to be left behind academically. Having aide time means that there is a chance that being left behind won’t happen.

It is worthwhile checking with your child’s school to see if aide time is possible. There are some hoops that have to be jumped through, but the knowledge that L was making progress made it all worthwhile.

Transition to a new teacher and classroom.

Particularly with L, this was super important. L is not good with change. No matter what it is, he copes better if he is prepared beforehand.

Late in 2015, we went and visited L’s classroom so that he could see the classroom and meet his teacher for the following year. We took a few photos of the classroom and his teacher and talked about the photos throughout the Christmas break. He was still very anxious when he started school in 2016, but he was somewhat familiar with his surroundings.

At times it just isn’t possible to have transition time, but it is worth asking the school. L has again had transition time with his teacher for next year, so hopefully that will help him adjust a little quicker when the new school year starts. We are well prepared that L may regress a little and that is perfectly normal.

Photos to do a social story.

If you haven’t heard of a social story, please do some research. There are social stories for almost every type of situation and event. We have a brilliant social story on the importance of putting on sunscreen and a hat before going outside that L's case manager at the early intervention centre found.

The photos that we took in 2015 of L's teacher and classroom for 2016, we made into a very simple photo story - at the point I wasn't aware of a social story. By personalising a social story with photos of your child and an environment that your child is familiar with, makes the story easier for your to relate to.

The story doesn't have to be complicated. It could be as simple as a few photos with captions explaining what the photos are.

This is L. This is ...................................., he/she will be your new teacher at school. This is a photo of your new classroom.

Again, your child may still have a rough start to the new school year, but the social story may make the transition a little smoother.

Then there are visual boards to think about. Does your child require a visual timetable or visual board on how to put on sunscreen or the steps involved in washing hands. Again these are relatively easy to complete yourself, or if your therapist is willing, they may create these for you.

Letter of introduction to new teacher/aide.

One thing that I did at the beginning of this year, was write up a letter from Lachlan to his teacher. In the letter I included anything and everything that I thought would make his school life a little easier. I included his stims and what they meant, the fact that he has no fear, the fact that he is a runner, his sensory issues, you name it it was in the letter.

I wanted to prepare his teachers so that if L couldn’t or wouldn’t talk to them, that they would know how to approach the situation. The letter that I wrote ended up being a bit of a novel and I may have seemed like I was going to be one of those annoying parents (I hope that I wasn't) but I wanted to prepare his teachers for every situation that they might encounter with L.

The letter put my mind at ease because I knew that I had done my up most best to inform his teachers and aides of all of L's mannerisms. They wouldn't have to second guess themselves and/or L's behaviour as they had the letter to refer to throughout the year.

I will be updating L's letter for next year as well. I'll also be writing one for O to her teacher.

Sensory Bag.

At the beginning of 2016, I put together a Sensory bag for L to take to school each day. L chose the fabric for the bag and I sewed up a very simple carry bag. In the bag was his weighted blanket, his block out ear protectors, a few fiddle toys, his essential oils and eventually L’s communication book.

This was L’s safety bag so that at any stage if he was feeling overwhelmed by the situation, he could access the things that help to calm him down. By taking the bag to school each day, L could start to self manage his anxiety and sensory issues.

O also had a mini sensory bag that was kept in her school desk – a few fiddle toys and her calming essential oils. At one point O told me that she felt calmer just knowing that the bag was there if she needed it. Towards the end of the year O became quite good at recognising at school when she was becoming anxious and was able to self manage with her oils and fiddle toys. This in turn gave her the confidence of knowing that she could self manage her anxiety.

It is a good idea to check with your child’s teacher not only to explain why your child may need the sensory toys but also to get the go ahead from them. After all it is their classroom.

Can your Early Intervention Centre or therapist go to the school to run a workshop?

We've had lengthy discussions with L's case manager in regards to this. For us it is imperative that L's therapists and the school, and in turn his teachers and aides, are on the same page when it comes to L's progress.

Throughout the school year just gone, I would take in to L's teachers and aides any and all information that we received from the therapists at the early intervention centre. The more people who are helping L with his therapy goals, the better. I also did the same for O's teacher.

Early in first term next year, one of his therapists will be going to the school and into L's classroom to speak with his teachers and aides about the types of therapy L participates in and how the therapy can be incorporated into the classroom.

Looking at this from an Educators point view, this information with not only assist L in the classroom but it could also assist other children in his class.

We're incredibly fortunate that L's early intervention centre actively encourages other teachers and carers of a child to attend the centre to observe what happens at the centre.

All of these strategies will assist O and L to not only have a smooth transition into the new school year but hopefully the strategies will also ensure that the remainder of the school year is a little easier for not only O and L but also for their teachers and aides.

Some may seem a little over the top, but I just want both my children to have access to the best learning opportunity that they can at school. And if means putting all these strategies in place then so be it.

Monday 26 December 2016

Merry Christmas, Feliz Navidad, Buon Natale........

Merry Christmas, Feliz Navidad, Selamat Hari Natal, Nollaig Shona Dhuit, Joyeux Noël, Buon Natale.....

It's that time of the year again. Christmas is almost at an end, tummies are full with delicious food, presents are all unwrapped, the little superheroes are all tuckered out..... who am I kidding, they're wide awake and full of energy and showing no signs of wanting to go to sleep!

Both little superheroes were up at the very early hour of 5am, so how they're both still awake, I have no idea. Although they both seem to be fading so that's a good sign! Let's hope that they continue to fade, this mumma bear would like a little sleep.

We've had a wonderful day, there were only two meltdowns today - one from each little superhero - and they both ended relatively quickly. They both get overwhelmed by the day, presents to open, phone calls to make, choices to make about new toys, it gets too much.

We now have more superhero toys, no surprise there really, so the toy room really does look like a superhero convention!

O wrote a song for Christmas which she is yet to sing to us but no doubt we'll hear in the coming days. I took a sneaky peek at what O had penned and I must say that she has done a marvelous job! She really does show maturity and creativity beyond her years at times.

We managed to pry Daddy superheroe's present from L. But promptly after opening it Daddy superhero was asked if he could please hand it back.

The little superheroes love choosing presents for each other and us, and generally speaking, either Daddy superhero or I end up with a present that the little superheroes want. This year was no exception and it was Daddy superheroes turn! For a very short while today, I'm talking about a period of less than 5 minutes, Daddy superhero had an awesome Iron Man mask! It's now the property of L!

The sacrifices we make for our little superheroes!!!

The top temperature today was 34oC but it felt alot warmer, so the day was spent indoors in the air conditioning, playing in the sprinkler outside and having a water balloon fight!

Yesterday we learnt of a family of 4, including a toddler and a baby, who are currently living in a tent. Their story really brought it home to all of us just how lucky we are. I hope that they enjoyed the bag of Christmas cheer that we hastily put together yesterday afternoon. It wasn't much, but hopefully it will bring a little joy to their family.

Every year leading up to Christmas we get the little superheroes to go through their toys so that we can give some to those who are less fortunate than us.

We want our little superheroes to understand that we are very fortunate to live where we live and have a roof over our head. We want them to be thankful for what they have and understand that Christmas isn't just about receiving presents. We want them to think of others and be willing to help others when they can. This year the little superheroes took two bags of toys and clothes to an opportunity shop.

For us today was all about spending time with loved ones and being grateful for what we have.

So from all of us at the new superhero convention centre to you and your family, Merry Christmas, we hope that you had a wonderful day where ever you are in this amazing world.

Wednesday 21 December 2016

The things that make my Little Superheroes happy.

Happiness is hard to find, especially in this day and age. I take immense joy in the fact that it is the small things in life that make my little superheroes laugh, giggle and smile. These things might be small and unimportant to some, but to my little superheroes they mean the world.

I asked my little superheroes what makes them happy and this is what they said!

O said Pillows. "I can roll around on them, I can build mountains to climb, I can build forts to hide in and I make nests out of them in bed when I go to sleep!"

Both O and L said our dog. She does the best helicopters and has the funniest wiggle butt every time we step outside to be with her. Even if it has only been a short time since we were last outside, we still get helicopters and a wiggle butt. She loves her kids and seems to know when they're having a rough day.

Both O and L said Teen Titans Go and The Miraculous Ladybug. These are the two shows that no matter what sort of day they've had, that both my little superheroes will always sit down to watch. These shows mean half an hour of very little movement.

L said Strawberries. "I like them!" L is a boy of very few words. He does love his strawberries, he'll eat punnets of them at a time! I think we need to invest in a strawberry farm, two plants in the vegie patch just aren't cutting it!

Both O and L said hugs! Both my little superheroes love cuddles, long squishy cuddles, quick cuddles. They're both cuddly children, most of the time.

L said puddles, "I like jumping in them!" L loves puddles, the muddier the better! He just doesn't like getting wet and dirty!

They also said jumping on the trampoline, spinning, Mummy, Daddy and looking at the stars at night time!

And these are the things that make me happy.......

Taking my shoes off after a long day at work.

When my little superheroes tell their repertoire of jokes! They may not have that many jokes in their repertoire but they tell them with so much enthusiasm and gusto, it is so hard not to burst out laughing.

When my husband reaches over a sleeping child to rub my back in the middle of the night.

A good book! Whether it is reading a story to my little superheroes or reading a book for me, there is nothing better than a good book. All children should have books to play with, look through and eventually read. My Dad used to say that as a teenager I could get 200km out of a book - we used to do a lot of driving!

A good cup of hot coffee! This doesn't happen very often, usually my coffee will end up cold which I will still drink. But you can't beat a good cup of hot coffee!

When people know the difference between they're, their and there! No explanation needed here! It isn't hard people!

Seeing someone I love smiling and hearing them giggle! I love creeping up on my little superheroes and Daddy superhero when they're in full giggle swing. Their giggles truly are contagious. I can't even get through the first few pages of the book "The Wonky Donkey" without O giggling her bottom off.

Seeing all the wildflowers in bloom in the nature reserve near us. Both my little superheroes love being outside. We try to get into the nature reserve near us whenever possible. The little superheroes love trying to spot the wildlife that resides there, they try to guess what the different tracks are. I love the wildflowers, there are so many varieties in the reserve - little bush orchids, colourful kangaroo paws, large bankisa flowers, and native paper daisies to name a few. They are just gorgeous, a living rainbow.

The smell of rain and hearing frogs croak. I grew up on national parks in the Northern Territory and was always surrounded by open woodland areas as well as rainforest patches. I've always loved the smell of rain, rain meant the sound of the tree frogs chorus. It is one of the things that I miss about living where we live now. We're slowly getting some resident frogs in our front garden, but not near enough to have a frog chorus!

What makes you happy? What puts a smile on your dial?

Saturday 17 December 2016

Stop trying to find out why and accept instead.

It is in our nature for the need to find a reason or an explanation as to why or how things happen.

It is usually in a parents nature to want to take responsibility and unnecessary blame for the things that happen to their children. Was it the glass of wine that I drank early in the pregnancy? Was it because of the way the birth planned out? Was it because an emergency Cesarean was needed to be done? Should I have persevered with breast feeding, even though it was not happening, instead of topping up with formula? And so on.

Autism is no different. As long as you're not living under a rock, you have probably read and heard of all the many theories as to why and how Autism occurs. Some of the theories are just down right ludicrous, some are not. There have been many research papers and books written on the subject. Some of the theories have even been disproven. They are still many scientists around the world doing hours of research into the genetics behind Autism, trying to locate whether or not there is a specific gene that is common between individuals with Autism.

We've never found the need to find out why L and O have Autism. We've never queried what happened or why it happened. We've never found the need to blame anyone or anything. But that is us.

We have accepted that Autism is part of our life. Autism is never going to go away. What is going to change is how L and O learn the skills to manage the various traits that they have.

I've had many people try, and I put the emphasis on try, to lecture me on immunisations and the supposed link to Autism. Yes, we do immunise and both of my little superheroes are up to date with their immunisations. The immunisations made no difference what so ever to either of my little superheroes.

L was a different baby from birth, he didn't change in any way after his immunisations.

O started to show traits over the last 12 months. O is following how Autism is typically described in girls - girls generally present Autism traits differently than boys. Girls are generally diagnosed at an older age. But thinking back to O as a baby and toddler, she was showing traits of Autism, they just didn't stand out like L's traits did.

The way that our Pediatrician explained it is that quite often children are diagnosed from 18 months onward, which is also after their 18 month year old needles. Some Autism traits can also be seen as developmental delays, so unless a child is presenting with severe Autism traits, an Autism diagnosis generally will not be done under 2 years. Hence the supposed connection between Autism and immunisations.

The way that I see it is that a babies brain is wired in utero. What changes after the child's birth is the memory wiring. The practice and experience wiring.

Through all the experiences, educational practice and outings that you did with your child, you have helped to lay new wiring in places where it may have been slim. You have helped to redirect brain traffic to important and helpful areas. You have helped your child to learn and practice new skills.

Do you want to know my theory on the development of Autism and the seemingly soaring rate?

I think that Autism Spectrum Disorder (ASD) is the next step in our evolution and that ASD individuals will be the next better version of Neurotypicals!

The intelligence of an ASD person is, at times, massive and yet their social skills suffer.

ASD children are resilient from a very young age. They are special in the way that they face challenges and overcome them from such a young age.

ASD children and other special needs children face challenges that many Neurotypical children may not face until they hit adulthood. ASD children are strong eager to learn little superheroes from a very early age. You just have to go visit an Early Intervention Centre to see just how young some of these little superheroes are.

You have done your up most best as a parent. You loved, accepted, nurtured and raised your child to the best of your ability.

So take that god damn self judgement and guilt, throw them out a window and do not allow them to return. Yes I know it is hard, but please try.

You need to start allowing yourself to have a guilt free time as a parent.

You need to be proud of the fantastic job as a parent that you are doing.

Tuesday 13 December 2016

Reasons Why an Autism Diagnosis is Not The End of The World. It’s The Start of a New One.

Since we’ve received L’s diagnosis, I have had so many people say to me “oh I’m so sorry” and “but now he has a label, label’s aren’t good to have.” I’ve also been told “oh I wouldn’t have pushed for a diagnosis, not until my child is at least 8 or 9 years old.”

Every time I had mentioned the word Autism in the past to GP’s, other specialists and child development professionals, I was fobbed off. I was given other excuses for L’s behaviour and development delays.

I was told by everyone around me that there was nothing wrong with L, that every child develops in their own time and that he would get there when he was ready.

I was constantly asked why we continued on the path of the medical merry-go-round. My response never changed. I’d always answer with because there is something different about L, he is not like other typically developing children. I didn’t want him left behind.

Every specialist that we have been to has said the same thing – there is something there, we just don’t know what it is. L’s immunologist has finally said that L’s results are inconclusive but to continue down the path of treatment for the worse-case scenario is just not feasible. The Audiologist has said that yes L does have hearing issues but they won’t do anything until it really becomes an issue.

Sure it took quite a number of hours out of my life (and quite a few dollars as well) but it has been worth it. Going to specialists on a regular basis certainly hasn’t made anything worse.

I looked at it from the point of view that a medical specialist is going to tell me one of two things: no there is nothing wrong with your child, at which point I would accept that L was just a slow developer, or yes there is something wrong and we could then start the process of therapy for L.

For a lot of people, a confirmed diagnosis of Autism is horrible, parents and family members go away crying and might start to grieve for their child, or they might start imagining the worse-case scenario. For me, it was the opposite.

It was a very long process but when I was told the words “yes L is in fact on the spectrum,” I felt a huge sense of relief wash over me. The words were said ever so calmly, confidently and in a tone that you would probably reserve for when talking about the weather with friends.

After we received the diagnosis I was finally able to say “see, I told you so!”

For me, as I said, it was relief. I wasn’t imagining everything that I was seeing in L. I also thought that there are families who receive worse diagnosis that Autism. I can work with Autism. For us and L and potentially O, a diagnosis of Autism is a good thing and here is why.

The Diagnosis Explains Everything.

A diagnosis of Autism for L meant that it explained why he did the things that he did, it explained his behaviour. One of the worse things about having a child who shows so many traits of Autism and not having a diagnosis, is the not knowing. Was I reading into his behaviour too much? What is considered normal development for a child? Are his sleep patterns, or lack of, completely normal? Would he grow out of these behaviours?

To some, a diagnosis of Autism means that the child has a label. What is it about labels that get people so worried? Autism doesn't define L, it just explains why he does the things that he does.

Depending on where you live, the way in which you obtain a diagnosis may vary. In Western Australia you will need to get three separate diagnosis - one from a Pediatrician, one from a child psychologist and one from a speech therapist - and all three must be in agreeance.

In other parts of Australia, you only need one diagnosis. Go figure!
Early Intervention

They're two little words and fairly self explanatory and yet they mean so much to Autism families.

A diagnosis means that you can start your child in an early intervention program. Sure, some organisations will start early intervention therapy before a diagnosis is received, but it is a lot harder to get a foot in the door and much more expensive. Early intervention means that the pieces of the puzzle can start to be put together with the therapy that your child needs.

People who say "I wouldn't chase a diagnosis until much later" need to do some research into Early Intervention and the benefits of an EI program. I would prefer my children to get the help now, rather than be left behind in the school system.

Early Intervention has done wonders for L this year. He has come along in leaps and bounds with his speech, his behaviour, he has learnt new skills, he has learnt how to share and take turns. He has begun to make friends. He is happy, most of the time.

You can access the level of funding that your child needs.

Money is always high on everyone's list of needs and wants. Throw in a child with special needs or a medical issue and everything just seems to become more expensive and complicated. You can get a small level of funding with a provisional diagnosis, but it is nowhere near what is actually needed. Trust me, we found out the hard way.

The funding level that we received after the official diagnosis was great, it is still a very small drop in a very large ocean, but it does go a long way to helping.

The funding that you can apply for not only depends on the level of diagnosis that you receive but also where you live and at times the age that child is when the diagnosis was done. At times the State and even the suburb that you live in can dictate what funding that you can apply for and receive.

Different states have different types of funding - you might live in an area that is in a NDIS trial site, you may qualify for FaHCSIA Funding.

There also various health plans that can be implemented by a GP or a Pediatrician to help with the costs of therapy.

It is honestly worth while speaking to not only your Pediatrician after a diagnosis but also your GP and an Autism Advocate organisation, such as the Autism Association in your state, to find out what types of funding are available. Quite often an Autism advocate can assist you with completing the copious amounts of paperwork required just to apply for funding.

You can access the support that you, your child and your family needs.

After we recieved L's diagnosis, all of these lovely supportive people seemed to magically appear out of nowhere and they were all falling over themselves to help us. It was amazing and wonderful all at the same time.

Friends, who you never knew where going through the same process as you, therapists, case managers, social workers, doctors and complete strangers that become your closest friends through your therapy circles - all these people are suddenly on your side. They have your back. And it is a wonderful feeling.

L has made wonderful relationships with his therapists at the Early Intervention centre that he attends. No matter what the question is, they will always give it their best to find an answer for us. They really are part of our family now.

You can also access support through Centrelink - yes there seem like a bazillion of forms to complete and it feels like it takes far too long, but when that health care card arrives in the mail, it's like Christmas has come early. And then there is the Companion Card, a must if you are eligible for one.

Having a child on the spectrum really does rekindle your faith in human nature.

You don't care what people think any more. Well sort of.

With a child on the spectrum, everything else going on around you really doesn't seem to be that bad anymore. It is much easier to prioritize your commitments.

Your friends mother sister aunt's dog has run away? I'm sorry that has happened but I'm really not in a position to be able help look for said dog. A person that I haven't seen or heard from, and not from a lack of trying, in x number of years has had a baby, pass on my congratulations but because they haven't made an effort to keep in contact with me, I'm not going to send a card or gift, I have therapy costs to worry about. Think that I am crazy for using essential oils? I don't really care what you think, the oils help my children so I'll keep using them. It's called thinking outside the box, you should try it sometime.

Writing it all down like that it makes it sound really harsh, but over the last 12 months I have begun to realise just how much time, effort and energy I have invested in other people and how little they have given back. I don't ask for much, but a little emotional support would be nice.

A little bit of understanding and empathy goes a long way.

I'm reading a book at the moment called "The Life Changing Magic of Not Giving a F*#*" by Sarah Knight. It is a great read and it is really making me realise that I have been caring about and spending too much time, effort and money on things that I have no control over.

I need to put my time, effort and money into my children and my family. They are what matters most. And if it means that I buy essential oils, so be it. I really don't care what others think anymore.

You gain a whole set of new friends that get what you're going through.

Since we received L's diagnosis, we have gained a whole new set of friends that if we didn't get a diagnosis, we probably would never have crossed path with. Sitting around waiting for therapy sessions to finish does this to people.

You start opening up and letting your guard down. We compare notes on what our children have been up to - oh he does that too, thank goodness, we're not the only ones! We celebrate each other's achievements, no matter how big or small. We prepare each other for upcoming funding meetings. We commiserate with each other when we've had rough days. We give friendly hugs when that's all you need to keep going.

You may also lose some friends who just don't get or don't want to understand what you are going through. But that is their loss, not yours.

You get to experience a whole new journey.

There's a wonderful short story titled "Welcome to Holland" written by Emily Perl Kingsley, that tries to explain what it is like raising a child with special needs. If you're able to search "Welcome to Holland," do it, it is a great read.

No one chose to go on this journey. It isn't like we put our hand up during my pregnancy with L and said "yep, choose us, we can do it." Saying that, I wouldn't change either of my little superheroes for the world. They are my world.

During both pregnancy's we were offered various tests that could give a prediction for Downs Syndrome. Both times we declined the offer. No matter what the results came back with, it wouldn't change our decision. We would be going through with the pregnancy and would love the child we were given, no matter what. A disability shouldn't change how you feel about a child - I know in some parts of the world that this is not the case and this saddens me deeply.

A disability is not a bad thing, it just means that the child has a different ability and our job as parents is to help the child to discover their different ability and let their light shine through.

Autism is a wonderful journey - it can be frustrating and slightly scary as you navigate through areas of life that you probably wouldn't have dreamt that you'd venture into. But it is also exciting and fun. You do, at times need to learn a whole new language, any plans that you may have had, have to altered slightly, but it is exciting. We're constantly learning.

Don't be discouraged, it does take time to get used to. Don't give up, because once you start looking around, you might just start to enjoy the journey. You'll learn things about yourself, your family and other people around. You'll find strength that you didn't know you had.

You finally have a reason for ignoring all the unsolicited advice.

Prior to the diagnosis, we had so many people give us advice. Some of the advice was wanted, some not wanted. Some of the advice was helpful, some of the advice was just downright insulting and some of the advice ended with us thinking WTF?

With a diagnosis, I have been able to say - well actually L's sleeping patterns are associated with the Autism and no matter how much you say we need to ignore him, it won't make him go to sleep. Melatonin on the other hand will!

We can happily pick and chose which advice we take on board, and I don't feel guilty about ignoring unsolicited advice.

Your child can be treated differently, in a good way.

Before I go any further I will clarify something - I have always said that Autism is the reason why L and O do certain things, however it by no means excuses their behaviour. Both of my little superheroes need to learn the right way and the wrong way of doing things. I don't want my little superheroes to receive preferential treatment, I do want people to be understanding.

This ultimately comes back to the contentious label issue! One father told me that he didn't want his son assessed as the child would be labelled for the rest of his life. His child would be treated differently, the child's school would receive funding and his son would miss out! But then on the other hand, the father was criticising the school for a) pushing to get his son assessed and b) leaving his son behind! I have read and heard some pretty moronic things but his words were one of the worst. This was a kid, who just by watching him, you could tell that he needed to be assessed.

All children should be treated differently, regardless of whether they are on the spectrum or not. With a diagnosis, L gets a little more leeway on some things such as we now know why he doesn't like wearing shoes, but we are working on this point ever so slowly. With a diagnosis, you are allowed to take extra care of your child, you probably are anyway, without feeling any guilt.

With a diagnosis, people may start to accept the way you do things as well start to follow your lead. With a diagnosis, you may be eligible for Aide time at school so that your child can have assistance in the classroom to a) learn new skills and b) to learn how to "fit in" with other children.

These are all good things because your child can start to feel like they are part of this crazy world. They will no longer miss out because they don't cope in stressful situations.

There are probably many other good points about receiving a diagnosis, but these are the ones that stand out to me. So the next time that you are sobbing into your pillow, please reflect on these things and any other positives that you can think of, and maybe, just maybe uncurl yourself a little from the foetal position. There is always someone who is worse off.