Wednesday 27 September 2017

The WTF Moments!

In his 5 years of life so far L has given us many WTF moments! 

In 2014 ....

When we took O to her very first swimming lesson, L took the opportunity to run off and jump into the pool. In the deep end. Without anyone to catch him and he promptly sunk to the bottom of the pool. After fishing him out, he wanted to do it all over again. Mmm, that was when we realised that L desperately needed to learn how to swim.

By mid 2014 we had already earnt a frequent flyer pass to the accident and emergency department with L due to various illnesses throughout the first half of the year and L had decided that his favourite nurse in the department was a man by the name of Kryll!

L tripped on air and smashed his head into the corner of a cupboard at day care which resulted in a trip to our local hospital. At the hospital ALL of the doctors on duty in the accident and emergency department kept stopping by to see what was actually wrong with the child who could not keep still - he was bouncing on the bed, jumping off the bed, running around the department. Once his wound was glued shut, I was advised that we should go home. But no, L had other ideas. A dose of panadol and he was ready to go back to day care! L was quite disappointed that Kryll wasn't on duty!!

Both O and L had their tonsils removed on the same day - a strategic move on our part which actually worked well. Within an hour of having his tonsils removed L was eating dry chicken nuggets while O was struggling to eat the jelly. At one point I turned away from L for literally 10 seconds to check on O, and when I turned back, L was sitting on his hospital bed saying "oh no, oh no." He wasn't particularly keen on the IV line so he pulled the entire thing out of his arm leaving me frantically trying to stop the flow of blood while checking on O who was busily vomiting and also trying to get the attention of the nurse on the ward to help me out. Oh, and when L was given a dose of oxycodeine for pain relief, it had the opposite effect! Party in our room as L was bouncing off the walls!

In 2015 ....

L decided to do some night time exploring around our house and climbing up onto the dining table. He lost his grip and fell off, smashing his top teeth into the table as he tumbled off. All done in the middle of the night when Daddy superhero was away for work.

Later in the year, L was copying O as she jumped off of our back retaining wall to practice her gymnastic "motor bike" landing. L face planted on the pavers, bounced along the ground a few times, got up and brushed himself and went back to do it again!

In 2016 ....

On Mothers Day, shortly after Daddy superhero had warned the little superheroes that someone was going to get hurt, L collided with O on the trampoline. L's two top front teeth went into the top of O's head, partially knocking out two teeth. Luckily, or unluckily depending on how you look at it, one of the teeth was one that he tried, unsuccessfully, to knock out in 2015. This resulted in emergency dental surgery to remove the two teeth leaving him gapless until the age of 6 or 7.

In the second half of the year, L decided that he wanted to do some gardening. Unsupervised. With the garden hoe. Which he climbed up onto Daddy's tool bench to get! The result was that L impaled one of the forks of the hoe between his big toe and the next on his left foot leaving a gaping hole on his foot. He would sit playing with his toes saying "I see in my foot" which would leave me feeling slightly queasy.

In 2017 .... 

This year L has earnt himself the nickname of "bead boy" at our local children’s hospital – so far this year we are up to 3 visits to the Accident and Emergency Department for injuries that L has sustained.

This year, L’s injuries include:

L managed, somehow, to get a padded child's toilet seat stuck around his neck. Why he stuck it over his head, we will never know. Daddy superhero was able to remove the seat with the garden shears. 

L stuck a sultana up his nose. We were able to remove the said sultana while he was asleep. And no he didn't think to tell us about the sultana.

L has smashed his head into various toys, furniture, walls and other objects all while playing, in the same spot on his forehead, over a period of about 7 weeks. This has caused a permanent odd bump on his forehead! At one point we were up to a count of 5 weeks of bumping the same spot! He gave his head a break for a few weeks and then started again, in the same spot on his head.

L stuck two, yes two, beados in his ear. Again L didn't tell us about the beados, they were discovered by our GP when I took L to the doctor as he was off colour. I'd be feeling off colour too with foreign objects in my ear! Cue a trip to our local hospital where one beado was removed in rather dramatic and traumatic fashion. After the first beado was removed the doctor checked L's ear and found a second beado to which L proudly declared "oh green, my favourite colour!" Not in your ear buddy! Cue a trip to the children’s hospital to undergo a general anaesthetic to remove the second beado. This resulted in L gaining the nickname of “bead boy” from the Emergency Department staff!

L fell out of the school bus and landed head first on the school driveway on the first back to school of second term. L gave himself concussion and we ended up back at the Children’s hospital due to the concussion but also due to a concern that he may have fractured his skull. This was a mere TWO weeks after the beado incident. Upon entering the emergency department one of the doctors recognised L and said "what are you doing back buddy?" and one the nurses said "oh I haven't met you, but you're bead boy!" Yep that's my son!

In June, L hit his finger with a stick mid week at school and over the following few days, his finger became more and more tender. A few days later he bumped his finger, and burst into tears. L rarely cries when he is hurt so we knew that something was wrong. Daddy superhero and I made the decision to hold him down and attempt to remove the black dot that we could see. After much screaming and yelling, on L's part, we removed a splinter that was half a centimetre long.

L stuck a plastic bead tube (a crafty type activity) in his other ear. As with the first foreign objects in the ear incident, L didn't think to tell us, our poor GP discovered it, yet again! Cue yet another trip to the Children’s hospital to get it removed, thankfully without the need for a general anaesthetic this time. This time around the Emergency Department staff were joking with me that they should put me on the payroll as we are there so often!

Several weeks ago L declared "Mummy I can't get them off!" L stuck two, yes two, plastic fish eye science toys on his fingers right down to and over the last knuckle. Far out!!! A combination of cooking oil, a hobby vice, pliers and wire cutters and they were both off. Lucky it was on a Saturday night as dinner was quite late!!! I was going to be taking the science toys to work with me for my charges to play with but with L's ability to get them stuck, I decided not to!

I am pleased to say that when O and one of her friends were playing with the beados recently, L told them "don't leave them on the floor, I might put them in my ear again!" At least he's learning!

Updated 8th of January 2018 ....

And to round out 2017, we paid yet another visit to an Accident and Emergency department of our NEW local hospital on new years eve! Yep, you guessed it, yet another foreign object in his ear. The verdict after the object was removed after lots of yelling and screaming was a seed of some description. L now has TWO favourite nurses in TWO accident and emergency departments of TWO hospitals in TWO states of Australia!

Now excuse me as I go and pour myself a glass of red!! Life is never dull!

I am hoping that L will give us a break from visiting the Children's hospital in 2018. Fingers crossed!!

And people wonder why we can't leave L unsupervised!

Saturday 23 September 2017

NDIS ..... What you need to know.

**** Updated 3rd of August 2019 ****

When we received L's provisional diagnosis of autism, our paediatrician advised us to apply to access the NDIS to help fund L's therapy costs as we were living in a NDIS trial site.

And I am glad that we followed his advice.

There are other funding options available, but without the NDIS we would not have been able to afford the level of therapy that L participates in.

O has recently been accepted as a participant in the NDIS as well which will assist us in providing the therapy that she requires.


Prior to applying to the NDIS to access the scheme, we knew very little about the scheme - in fact, I'd heard about the scheme but didn't know what the scheme was. The first time that we applied to access the scheme, it was all very confusing. When we applied for O to enter the scheme we were much more prepared and we've received a much better outcome for O's first plan, than we did for L's first plan.

Now that the NDIS is rolling out across more areas of Australia, I thought that I would write a post on the scheme - all the important bits that you need to know prior to applying to enter the scheme. I'm writing this piece from the point of view that it is your child accessing the scheme but keep in mind that individuals of all ages can apply to access the scheme.

So what is the NDIS?

NDIS stands for the National Disability Insurance Scheme, at times it is also known as the NDIA, the National Disability Insurance Agency.

The NDIS is the new way of providing support for Australians with a disability. Once the scheme has rolled out nation wide it will provide Australians, who are under the age of 65 with a permanent and significant disability, with the reasonable and necessary supports that they require to live an ordinary life.

The NDIS takes a lifetime approach in supplying funding - they invest in people with a disability early in life so that there will be a significant improvement later in their life. The aim of the NDIS is to build participants skills and capability so that they can participate in the community and gain employment.

The NDIS is currently rolling out nation wide and the way the scheme operates can differ slightly from state to state.

One thing to remember about the NDIS is that they are an insurance agency. Value for money, reasonable and necessary, and all the other insurance related terms!!

How do you access the NDIS?

The very first step in accessing the NDIS is to determine whether or not your child is eligible to access the scheme. There are several criteria that you must satisfy to be able to access the scheme, these are listed on their website. I didn't realise but you are able to apply to access the NDIS 6 months prior to the scheme rolling out in your area. This will be helpful for people who already have a diagnosis and are waiting for the roll out to occur in their area.

If you have determined that your child, or yourself, may be eligible to access the scheme, the next step is that you must complete an access request form. In this form you are able to give a brief run down of your child's disability. The details that you include on this form will assist the NDIS to determine whether or not your child will be accepted into the scheme.

On both occasions that we completed these forms, I included ALL of L and O's diagnostic reports with their respective applications. You're only able to include limited information on the form itself, so submitting all of the diagnostic reports means that the NDIS is able to view medical professional information about your child's condition prior to making a decision as to your eligibility.

What's next?

Once accepted, your child becomes a participant in the scheme and you become their advocate!

You'll be assigned a NDIS planner - this is the person who will be responsible for setting your child's plan, setting your child's goals for the next twelve months and deciding what level of funding your child will be given.

During the initial planning meeting you will be asked a series of questions about your child and you will have the opportunity to further expand on the information that you included on the access form.

The only advice that I can offer is to answer the questions honestly. Some of the questions are based on your child's current ability or skill level to complete particular skills. When answering these questions, if your child has done a skill once and has never attempted or successfully completed the skill again, this really doesn't count as achieving the skill.

Don't be embarrassed to admit to your planner that your child is unable to complete a skill on their own - that is why your child needs the funding. All of this information assists your planner to determine the level of funding that will be allocated.

During the planning meeting, be prepared to educate your planner, in the nicest way possible, about your child's disability. We are now onto L's fifth plan, and it was only this year that we had a planner who had an understanding of what Autism is. This was a huge relief after having a series of planners who really did not know much about Autism.

During your planning meeting you will be asked how you would like your plan managed. As of 2019, there are now three different options - plan managed, self managed and agency managed.

Plan managed - essentially your plan will contain a budgeted amount so that you can go to a plan manager, who must be a NDIS registered provider and they will then liaise with your therapy and support providers. This option gives you a lot of flexibility as you do not necessarily have to use an NDIS registered provider. Your plan manager will pay your providers, keep track of your funds, take care of the financial reporting for you and depending on your circumstances they can also assist you in choosing your providers.

Self Managed - This option essentially means that you are managing your child's funds, or yourself if you are the participant. This choice also provides you with a lot of flexibility in choosing your supports however keep in mind that if you chose to self manage the funds, you need to keep track of what funds are spent, submit receipts to the NDIS and the NDIS recommends that the funds are kept in a separate bank account to what you use on an every day basis.

Agency Managed - This option means that you can be quite limited in which providers you choose as they must be NDIS registered. However using this option means that your plan and funds are managed by the NDIS. The providers liaise direct with the NDIS to claim payments.

Prior to L's initial planning meeting, we made contact with the Autism Association of WA to obtain advice on what information we needed to take with us to the meeting, what information we should include in L's plan and what level of funding we needed to request from the NDIS.

You have no control what so ever over the level of funding that is provided to your child, you can however influence the funding that may be provided with the information that you submit in your plan.

You will be asked what goals you would like to set for your child to achieve over the next twelve months. From the NDIS' perspective these goals must be worded in a particular way - the goals in both O and L's current plans are very vague sounding. Depending on therapy your child will be attending, your child's therapy goals will be set based on the NDIS goals.

What won't the NDIS fund?

There is an entire list on the NDIS website as to what they will fund so it is easier to list what they will not fund! Your planner will be able to provide you with an idea of what you can and cannot apply for.

The NDIS will generally not fund anything that is provided through the public system - education, health etc.

The NDIS will generally also not fund anything that is considered to be a daily living expense - medication, trampolines, and training among other things.

The NDIS will not fund anything that is NOT related to a participants disability.

Finding a Provider.

Once your child has been accepted into the NDIS, you then have the task of determining which provider or providers that you want to make contact with. With the different options of plan management, participants now have the option to attend providers who are not registered with the NDIS.

You will also gain access to your child's NDIS portal - this is where you can find providers, manage funds (if you're self managed,) and look at your child's plan and keep track of how the funds are travelling.
The NDIS has assisted in making a huge impact on L's development over the last three and a half years. The funding has assisted L on his autism journey and it has certainly alleviated some of the stress that we found ourselves under. 

We know that in the future L may not need the current level of funding that he currently receives, but it is peace of mind knowing that the funding will always be there if he needs it.

It has been a rough ride to get to where we now are, but I would honestly recommend the scheme to other families.

And no we don't get any extra funding for writing this piece. This is information that I would have loved to know prior to entering the scheme with L and now with O!

Tuesday 19 September 2017

Child's Play. Therapy at Home!

I have mentioned several times in various posts that I am able to turn almost any household chore or child's game into a therapy activity.

In my experience with working with children in early learning settings, through my previous jobs as an Education Officer and even with my own two little superheroes, I have found that children learn best when they are playing.

Children, including my two little superheroes, seem to be more willing to take part in an activity when the activity is fun and enjoyable. They seem to learn best when they think that they are just having fun! If only they knew the truth that, shock horror, they were actually learning and practising new skills!

When an activity is fun and it is purposeful, this can be a huge factor in determining how successful the activity will be and how long a child will willingly participate in the activity.

When L started in his early intervention therapy last year, we wanted to give him the best opportunity possible of succeeding with the new skills that he was being taught.

So Daddy superhero and I decided that we would attempt to turn everyday household activities and chores into therapy activities.

Home really is filled with endless opportunities to teach our children new skills and to allow them to practise new skills.

So here is my list of the how, and the why, to turn household chores into learning opportunities.

But, and there is always a but, before I go on ALL of the following activities are based on our families experience and should NOT be considered medical advice. If you feel that your child lacks in any of the areas that are included in this piece, please consult your GP or paediatrician.

Crossing the Mid-line.

First up, what is the mid-line?

The mid-line is an invisible line that runs down the centre of our body and divides the body into the left and right. The ability of being able to cross the mid-line is not something that babies are born with. Children develop the ability through "normal" childhood development. But it is an ability that babies and children practise every day through play - reaching for toys, playing with their toes, exploring objects with their hands and so on.

Being able to cross the mid-line is an important skill to develop - we use it when writing, reading a book, tying our show laces, sitting cross legged on the floor, doing puzzles, hitting a ball with a bat, catching a ball and the list goes on. Any time your right (or left hand) crosses over to the opposite side of your body, you are crossing your mid-line.

Some children struggle to cross the mid-line and L was one of these children. His lack of being able to cross his mid-line was evident when he was drawing or painting. When drawing or painting on a piece of paper, if he wanted to draw or paint on the left hand side of the page, he would turn the page on the table to get to the spot that he wanted to decorate. L was physically unable to put his hand across his body to the left hand side.

When L was in kindy he was desperate to be able to write his own name, but crossing the mid-line can be a pre-cursor to be being able to write from left to right on a page. Mmmm, what to do.

He was practising crossing his mid-line at the early intervention centre through play, and at home through the following activities.
  • Drying dishes - One of L's favourite household chores is drying the dishes - one day, his future partner is going to love me! We have a small child's table that we use for various reasons in our house. I seat L at the table, put the dish towel in his right hand and the wet dishes on the left hand side of the table. Through the action of reaching across the table to the wet dishes he was crossing his mid-line each and every time. 
  • Painting - I'd always put the paint on the opposite side of the table and ask L to try and reach the paint without moving his body. Again, every time he reached for the paint, he'd have to cross his mid-line.
  • Car letters and numbers - We have created a game board for L to practise his letter and number recognition skills. I have put letter and number stickers on the top of toy cars and have laminated words that L wanted to learn how to spell. L sits directly in front of the board and we put the cars that he needs to his left. Again when he reaches for the cars that he needs, he has to cross his mid-line!
Every time we were assisting L to practise these skills, either myself or Daddy superhero would model to him how to do the skill. This helped tremendously in L being able to successfully complete the skill. And when he became frustrated, we'd offer him reassurance and encouragement!

Proprioception Input.

Earlier this year I published a post on Sensory Proprioception. Put simply, the sense of proprioception is little known but it is very important as it is responsible for our body awareness and position. The proprioception sense 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, like when hugging someone.

Prior to L starting early intervention, I can honestly say that I had no idea what this little known sense was responsible for. When one of his therapists explained the sense, it was a "aha moment."

We then had to start incorporating activities into our day to day routines so that L's sensory proprioception input was increased which in turn assisted in further developing his sense of proprioception.

We did this by:
  • Getting L to assist in carrying the shopping into the house from the car. By carrying bags of differing weights he was able to get a feel for what different weights felt like.
  • We'd get L and O to help with "heavy work" activities around the house - helping to pack away toys in the house, helping to put the washing into and out of the washing machine, watering the vegetable garden with a full 3L bottle of water, moving child's furniture around the house. The possibilities are endless!
  • We'd do some deep tissue massage by squeezing L's arms and legs when he was agitated.
  • We'd encourage L and O to play with different fidget spinners, playdoh and other sensory toys so that they could work out what level of force they needed to manipulate the tools.
  • We have an endless supply of different types of pillows and blankets that the little superheroes can stack, climb on and hide under.
The possibilities for increasing a child's proprioception input really are endless!

Fine Motor Control.

Fine motor control really is a no brainer - we need this skill every day to tie shoe laces, to do up buttons and zips, to write, to read and so on.

Fine motor control is defined as the coordination of our small muscles usually in synchronization with our hands, fingers and eyes.

There are many ways in which a child can practise these skills.
  • L loves to help hang the washing out and take the washing in - in particular he just loves playing with the pegs! I'll put the peg basket down at his level and let him play with the pegs, but the deal is that he has to pass me pegs when I need them. We have a game going where he pegs them onto the side of the basket and I take them from there. When we first started playing this game, hanging the washing out dragged on and on as L struggled to clip the pegs onto the basket. He would usually end up needing to use both hands to manipulate the pegs. Now, he manipulates the pegs with one hand with ease.
  • Prior to going on a family holiday to Queensland in 2016, I created a pencil case of different letter recognition games. L loved "playing" with each and every one of these games. From my point of view, every one of the games helped with his fine motor control - he had to use pegs to clip onto the correct number on some games, he had to pull velcro pieces on and off of other games and all of the games assisted with his number recognition skills.
  • Drawing and painting - we'd encourage L to use the pencil grip to hold whatever he was using to draw or paint with.
  • We have a puzzle board with various clips on it. L loves playing with this and as every clip on the board is different he uses varying degrees of fine motor control to open and close the clips and puzzle pieces.
Again the possibilities for fine motor control activities are endless around the house.

Emotional Regulation

Put simply emotional regulation is the ability to recognise and respond to our own emotions as well as the emotions of others.

Emotional regulation is an important skill for ALL children to learn as it assists them to not only recognise and respond appropriately to their own and others emotions, it can also assist with their overall behaviour. It is thought that emotional regulation is linked to how well children manage other tasks during childhood. Through successful emotional regulation, children are more able to manage difficult and stressful times that occur as part of life. And as a child learns how to self regulate their own emotions, their concentration ability, turn taking and sharing skills are also improved. 

L has always struggled with his own emotional regulation - it was one of the big tell tale signs of his autism from an early age. L rarely responded appropriately to the emotions of others.

We try to incorporate emotional regulation into our daily routine, especially when reading books with L and O.

While reading, we talk about how L and O think the characters are feeling during the story. We talk about why the characters might be feeling that way - what is happening in the story to make them feel that way. We talk about how the story makes O and L feel.

We read books on emotional regulation, such as The Monsters Inside, during which the story gives L and O ways in which they are able to self regulate their own emotions.

Talking about how different characters are feeling also assists in developing my little superheroes theory of mind skills - but that is another blog post!

When deciding on what area of therapy an activity or game would slot into, I think outside of the box. I take a good look at the how and why of an activity. 

Do you have any activities that you do regularly to assist your child's development? I'd love to hear all about your ideas.

*** Theory of Mind - You may have seen this written as ToM. Theory of Mind is the ability to attribute your own mental states (beliefs, intents, desires, emotions and so on) not only to yourself but also to others. It is the ability to place your self in the place of others to try and work out how they may be feeling at any particular moment in time. It is also the ability to understand that others may have different perspectives than your own. Quite often theory of mind has not fully developed in individuals who have autism and as such they will struggle to understand how others are feeling.

Saturday 16 September 2017

Being Me. The Socially Awkward One!

I haven't had much time for self reflection until just recently.

It was while talking with O recently about social interactions at school that were puzzling her, that I began to take a step back into my inner self, and boy did the memories come flooding back.

At times when I am talking with O or while I am managing one of L's meltdowns or talking with the little superheroes therapists and specialists, I am able to take a step back and I have flashbacks to my childhood, teenage years and even memories of while I was a young adult.

So much of my life has begun to make sense now that I have two children on the autism spectrum. In the last 18 months or so, I have had a lot of "a ha" moments.

As a child and a teenager I knew that I was different, I just didn't know what the issue was.

As a teenager and young adult I always felt socially awkward. I craved acceptance and understanding from my peers but it felt as though I never seemed to be truly accepted for who I was.

I was seen as the weird one. The odd one. And at times I felt very isolated from those around me.

And those peers who I was most desperate to impress, eventually excluded me one way or another, either intentionally or unintentionally.

I was laughed at. I was bullied.

I always struggled as a teenager to understand why my peers said the things that they said and I struggled to understand their actions.

Why does someone say that they are your friend but then act the complete opposite? Why do people say one thing but mean the opposite?

I became a master at reading other people to ascertain who I would or wouldn't open up to and this was due to an overwhelming fear of being ridiculed or ostracised.

But by my late teenage years, this skill would fail me on a regular basis when I would begin to open up to people and then be burnt by them within what seemed like a matter of minutes.

So my solution was that I would steer clear of and avoid those that I didn't understand. The only issue with this solution is that becoming a hermit at the age of 17 isn't good for your mental or emotional well being.

Engaging in conversations were always an effort for me as a teenager. I'd have a tremendous feeling of trepidation leading into every single conversation.

I preferred to be alone in my thoughts. I was often alone in my thoughts.

I found navigating the politics of social groups and gatherings extremely challenging. Even in my twenties and thirties, this was a challenging task for me to actively participate in.

Social settings have always, and still do at times, provoked my anxiety into action.

What feels like a million questions would flood my brain and cause my anxiety to go into overdrive. 

How do I act? What do I say? How do I take the first step into a conversation? Do they think that I am weird? Do they like me? Did I just say something stupid? Do they now hate me? Am I missing any social cues that make them think that I am weird? What social cues am I meant to be looking for? Oh god, am I staring at them? At what point can I leave?

I'm then always worried that I am acting weird, because let's face it, with all of these questions running through my head, I may have seemed aloof, away with the fairies.

So then I'd be conscious about just concentrating on the conversation but by then I'd missed what the conversation was all about so I was back to the questions.

It really is a vicious cycle and it is incredibly difficult to get out of the cycle.

I've been stung enough times to know that I don't know all of the social rules that apply to social gatherings.

The thing about social rules is that they are unwritten. Everyone just knows these social rules. But if you are socially awkward to begin with, unwritten social rules are a nightmare. Generally, you only know that you've broken a social rule AFTER you've broken the rule when you are being ridiculed for your mistake.

There were those that knew, and still know, the real me. They accepted me for who I was, for who I am. And I am grateful for their friendship. But getting to the place where I'm no longer reserved with people and comfortable enough to show the real me, takes a lot of effort on my part and also time. I have to trust myself to open up but also be prepared to be shot down.

I have always had to exert a little more effort to master the social rules that the majority of the population seem to master with ease.

Being socially awkward meant that I spent a lot of time sitting back and observing people. Observing and taking mental notes on different social rules. I could see people for who they really were.

But sitting back and observing, when I probably should have been socialising, meant that I came across as the shy or quiet or reserved or standoffish one. But I am none of these. I am introverted until you get to know me.

It isn't the best feeling in the world being socially awkward. It can be very isolating. I did spend a lot of time alone, which meant that I was happy in my own company but it also meant that I had a lot of time to run over and over conversations and interactions. This is not a good thing for someone who is socially awkward.

I have felt this way for pretty much all of my life and I have always blamed weakness or depression or anxiety or being a moody teenager. I knew that some of my peers felt this way at times but I just thought that they coped better than I did with these feelings.

It is a relief to now know that there is a reason behind why I didn't understand social interactions - Autism, Aspergers, being an undiagnosed Aspie girl!

I have grown so much as a person, as a mum, since having both children diagnosed with autism, especially now with O.

I see so very much of myself in O and her struggles at school in understanding her friends.

I want O to know that being socially awkward doesn't make you any better or worse than others around you. It simply means that you view the world differently.

I want both of my little superheroes to know that they are never alone in their thoughts and their struggles as I have been there. I know how it feels and I understand just how lost these thoughts and struggles can make you feel.

And I am determined to equip both O and L with the skills that they require to navigate the minefield that is social interactions.

I have accepted that being socially awkward is a part of what makes me me and I have stopped getting caught up in my fears about what others think and feel about me. 

I am who I am. The socially awkward one!

Tuesday 12 September 2017

Why Early Intervention?

Autism is not a rare disorder, from the 2012 ABS Autism in Australia report, 0.5 percent of the population or 115,400 people have been diagnosed with autism. For every four boys who are diagnosed, 1 girl is diagnosed. There is still no single known cause of autism and there is no cure.

There is one thing that has been shown to assist children who have been diagnosed with Autism and that is Early Intervention therapy.

L has been attending therapy at the Autism Association of Western Australia First Steps for Autism Program at one of their Early Intervention Centres since February 2016 and he has made the most remarkable progress.

Yet we are still asked on a regular basis, why are you sending L to this therapy? We are also asked what early intervention is.


Why Early Intervention Therapy?

It has been shown that children with autism benefit from early intervention programs. The early intervention makes a huge difference to a child's development which leads to better outcomes for the children at school and in social situations. The earlier that a child starts in an early intervention program, the better the outcome for the child.

Prior to starting early intervention therapy, L struggled on a daily basis with communication and as such he would express himself through challenging behaviours.

The therapy sessions have helped us to identify the purpose of L's challenging behaviour and has in turn taught L more appropriate alternative behaviours to replace the challenging behaviours. L's key therapist has also given us new ways in which to mange his challenging behaviours.

Through the therapy that he attends, L has learnt to communicate effectively and he has learnt social skills. Throughout every therapy session he is able to interact with children his own age in a controlled environment so that he is able to practice the skills that he is learning. And while at the early intervention centre, his therapists are always on hand to step in when he needs them to.

L's therapy focuses on developing his attention and communication skills, listening, language and social skills. His therapy goals have been set based upon his current skill level and also on his goals from his NDIS funding plan.
So what is early intervention?

Early intervention is made of a system of coordinated therapies (or interventions) and services that offer these therapies. The therapies are conducted via programs and sessions that are aimed at assisting a child's development.

If you look up the definition of early intervention it states "doing something, taking action or using a treatment to try to improve a particular condition."

Put simply the aim of early intervention is not to cure your child, it is aimed at developing the skills that your child needs to learn to navigate the world around them. It isn't about changing your child, it is about helping your child's age appropriate growth and development. These skills may include teaching your child communication skills, it may be skills to manage their sensory issues, it may be teaching them how to recognise and respond to their own emotions.

The First Steps of Autism Program that L attends is designed for children with autism aged 0 to 8 years old.

The program that L attends is conducted by a trans-disciplinary team that consists of psychologists, speech pathologists, occupational therapists, early childhood and primary teachers and therapy assistants. The ratio of children is staff is brilliant - there are some sessions that L attends where the staff outnumber the children!

L participates in an intensive three hours of therapy once a week at the centre.

Depending on the severity of a child's ASD diagnosis, they may attend the centre for more therapy hours throughout the week.

L started in a one on one therapy program which also included group sessions with other children. The therapy that was offered was tailored to meet his individual needs and his NDIS goals.

He has now progressed to the school readiness program. This is purely a group session but each child's therapy goals are integrated into the sessions. Through the school readiness program L is developing the skills that he requires for his effective participation at school.

All of the therapy at the early intervention centre is play based - the children engage in fun activities during which they are learning and practising new skills.

Which Early Intervention Service do I choose?

Prior to obtaining L's autism diagnosis, I will admit that I knew very little about the therapies that are available to individuals with autism.

When it comes to looking into and researching different early intervention programs and services, it can be very difficult to know where and how to start.

In regards to autism, there are many different kinds of early intervention services. Different children will respond to therapy in different ways. What works for one child, will not necessarily work for the next child. It really is a case of you needing to find the best fit for your child and your family.

Do your research. If possible, arrange to visit the early intervention centre so that you can view their set up and their programs first hand. 

It can be quite scary when you find out the cost, both money and time, involved in an early intervention program but if you look towards the end goal, it really is worth it.

Ask yourself the following questions -

How will the early intervention service help your child?
What funding is available to assist to cover the costs of therapy?
What will the therapy cost?

What does a good Early Intervention service look like?

I'm not an expert when it comes to early intervention services, I can only go on our experiences with L's early intervention service.

But in my mind, a good early intervention program provides the following:

- The staff include the family members in the therapy that your child is involved in so that you can learn alongside your child. You don't necessarily have to be present for every therapy session, you should be provided with support and guidance so that you know what you can do at home to assist your child's progress.

- The service have staff that are specially trained in the intervention programs that they are offering.

- The service should develop an individual plan for your child based on their current skill level and needs. And the staff should monitor and regularly review and update the plan based on your child's progress within the program.

- The program is designed for children with ASD. This is a must!

Early intervention is not necessarily about the number of hours that your child will be attending therapy, it is about the quality of those hours.

The intensity of therapy and support may be intense at the beginning but it will gradually decrease as your child learns and retains new skills.

We have noticed a massive change in L since beginning therapy, but in the last six months there has been a noticeable shift between L and O's ability to adapt to change and their social awareness.

Both little superheroes have always struggled socially but as L has been learning new skills on how to engage with children his own age, he is making progress faster than O is. In the past L would become upset when O didn't play with him when there were other children present. It is becoming more and more difficult for O to understand social situations, so she is now becoming upset as L will happily go off and join in play.

This change in L is in part due to the therapy that he is receiving.

I can honestly say that sending L to the early intervention centre is one of the best decisions that we have made.