Saturday, 23 September 2017

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


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.

But....

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 has not yet rolled out nation wide and the way the scheme operates differs 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 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 third plan, and not once have any of our planners had an extensive knowledge of autism and how it can affect an individual.

You are given the option of self managing the funds allocated to your child or the funds can be provider managed. 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.

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 as to what they will fund so it is easier to list what they will not fund!

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

The NDIS will 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. 

The main point to keep in mind is that which ever provider you chose to go with for therapy or other services, they must be registered with the NDIS. If they are not registered, I believe there is an option for them to apply to become a registered provider, I'm just not sure how this is achieved. However, most providers are registered with the scheme.
The NDIS has assisted in making a huge impact on L's development over the last 18 months or so. 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.

So......

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.

Saturday, 9 September 2017

There is no one look to Autism.

On a fairly regular basis I have the pleasure of speaking with people who have very little clue about autism and all that it entails.


Some times it is a pleasure, other times not so much.

Some of these people are simply ill informed about autism, some are people who have no connection what so ever with autism and are genuinely curious and want to know more and some people are just down right rude.

Over the last 2 years I've found that people who genuinely want to know more about autism, will ask questions. And people who aren't interested, well they are just rude.

This morning after O and L's swimming lessons was one such occasion.

Prior to swimming and after his lesson L was doing a lot of sensory seeking. I'm talking bouncing, spinning and just being boisterous in general. But he wasn't hurting anyone as we walked to the change rooms.

As it was just myself and the two little superheroes, I headed to the family change rooms but unfortunately they were both occupied, so we went into the female change rooms.

After entering the change rooms and getting both little superheroes into a shower, an elderly lady who should know better when it comes to using manners towards others, approached me and told me that I needed to control my child.

I very politely told her that L was doing lots of sensory seeking this morning due to his autism.

Before I could continue, she responded with "He doesn't look autistic, they look ........" and I will not repeat the word that she said. No one should ever say that word about others. The R word should be removed from the dictionary.

Now normally I would have taken this opportunity to spread a little autism awareness but she was just down right rude.

I've stopped taking comments like these to heart and I've become quite skilled at reading faces as to whether or not people are interested in learning more about autism.

When I get the inkling that learning is not possible, and sometimes it just isn't possible to enlighten members of society, I fall back onto one of my sarcastic comments like the one below from my good friend over at It's A Tink Thing.


http://itsatinkthing.com/

But each encounter with someone who utters the phrase "but they don't look autistic" gets me thinking - what do you say to someone who doesn't think that your child looks autistic?

What is the look of Autism?

The thing is autism doesn't have a look.

No I'll take that back, autism does have a look.

At superhero headquarters autism looks like a child with red curly hair and bright blue eyes. Autism in our place looks like a child with a wide smile on his face whenever he is engaging in his most favourite pastime - playing with his superhero figures.

Autism looks like a child who loves green apples and strawberries but who will not touch a red apple.

Autism looks like a child who spoke a grand total of 20 words up until his third birthday.

Autism also looks like a child with strawberry blonde hair that goes super frizzy when the air is humid. Autism looks like a child whose eyes change from the brightest of blue to grey when she is confused, sad, frightened or tired.

Autism looks like a child who loves to read The Complete Works of Shakespeare for fun.

Autism looks like a child who taught herself the three times table when she was three years old.

Have you figured out where I am heading with this?

There is no one look to autism.



Each encounter also leaves me feeling either grateful that I have been able to spread a little autism awareness OR feeling incredibly angry due to the rudeness of the other person.

When someone says "they don't look autistic" I don't think that they consider how hurtful the comment is to parents or to individuals with autism.

The comment invalidates all of my efforts as a parent to assist my children to understand the world around them. 

The comment invalidates all of the battles that we have gone through as a family and all of the triumphs that we've celebrated so far on our autism journey.

The comment invalidates all of the hours that have gone into taking L to therapy so that he can learn new skills.

When someone says the comment to be rude, I take it that they are implying that we have wasted our time over the last two years first in gaining L's autism diagnosis and also in seeking therapy for him, because to them he "just looks normal." But then what does normal look like?

And by them comparing their experience with autism, which let's face it may have been watching the movie Rainman, they have made an error. 

They have forgotten that autism is in fact a spectrum, and a very wide spectrum at that. 

And because autism is a spectrum, there is no one look.

The look of autism is L and it is also O. It also every other individual that you may meet who is on the spectrum.

Autism is a very beautiful thing!

Why do my little superheroes show their vulnerable side to me?


Have you ever been told comments like the following by complete strangers?

"Your children are so well behaved and so well mannered."

 "It is wonderful to see such polite children, you're doing such a great job with them."

"O is so well behaved in class, she's a pleasure to teach."

What????? My little monsters, I mean, my children????? Good golly no, you must be mistaken! Are you sure you not talking about other children?

Both of my little superheroes are often complimented on their manners when we are in public. I usually smile graciously, thank the stranger profusely and then make a hasty exit in the opposite direction and hope that they don't stumble upon us when the little superheroes are in the midst of a meltdown!

And as we're walking away my mind will flash to earlier in the day when I could have sworn that my little superheroes were trying to kill each other while they were waiting to see who could cause my head to start spinning first.

At home it feels as though both of my little superheroes are at each others throats constantly. They do play nicely with each other, but the majority of the time they are arguing or antagonising one another. I may be over exaggerating the amount of time, but some days I feel as though I am just a ring side referee.



However when we are in public, my little superheroes turn into polite and well mannered children. They say please, thank you and excuse me. They are polite to each other, to us and to others and they are helpful.

And this is when we receive the compliments.

Compliments that cause me to feel like a complete fraud.

Compliments that cause me to become frustrated because I know that the minute we arrive home, the polite children will disappear and the arguing will begin, again.

And then I remember that my little superheroes show their vulnerable side to me because I am Mum, I am their safe place. I am predictable and I love them unconditionally. And they both know this.

Home is their safe haven where there is no judgement from others. Home is the place where they are accepted for who they are.

And that is when I sit back and think that yes I am doing a great job at raising my little superheroes to be polite and well mannered children.

I don't lose my s&*# all that often and in public may two are good, no great, kids.

I also figure that I would prefer my little superheroes to be little terrors at home and polite in public, rather than the other way round.

So the next time you are pulling your hair out as to where your polite children have disappeared to, keep this post in mind!

Wednesday, 6 September 2017

Thank you.....


Teacher aides play an important role in classrooms all across the country in assisting students and teachers.

So it is only fair that on the first Friday in September, teacher aides are recognised and thanked for all that they do to support students, special needs or not, in school classrooms and in the playground.

We have been incredibly fortunate to have had some fantastic teacher aides assisting L and O at school both this year and in previous years.

So to you all, I thank you.



The dedication of you all to both of my children brings tears to my eyes and reassures me that at school they are both in very capable hands. 

I know that when I leave my children at school in an emotional state, that you all know just what to do to calm and reassure them both. This makes leaving them in an emotional state just that little bit easier.

Thank you for stepping in and giving them an all reassuring "mum" hug when I am not able to be there for them.

Thank you for always being positive and enthusiastic when around my little superheroes. Both of my little superheroes regularly speak of you all at home. What you say is gospel! 

I regularly see the love and trust that both of my little superheroes have for you all and I truly hope that you can see it too. They may not express their gratitude to you on a daily basis, but they do appreciate everything that you do. And so do I.

My little superheroes can sense when others are showing them love and compassion. They can sense this from a mile away. They just know when people are truly invested in them. Thank you for working hard to gain their trust.

To you all I thank you for being their advocate at school. Thank you for being their voice when they struggle to find their own when they are in sensory overload. 

It warms my heart that you have learnt my little superheroes personalities, their little quirks, their strengths and their weaknesses. Thank you for being able to pick up on their cues when they require brain breaks or a little extra reassurance that everything is going to be okay.

Thank you for acknowledging and celebrating all the successes that L and O have achieved whilst at school, no matter how small the successes are.

I know that you have days which are exhausting and discouraging, but thank you for not giving up on my little superheroes. Thank you for throwing 100% of yourselves into loving, nurturing and caring for my little superheroes while they are in your care at school.

Mrs DC and Mrs S, I loving watching when L gives you hugs and kisses and I can see how relaxed he is when sitting with you. I see the gentle hand that you use to help guide L into the classroom and how you keep a watchful eye on him to make sure that he is always safe.

Mrs L thank you for your ever watchful eye on O as she learns to read others emotions. Thank you for being there when she struggles with her anxiety. Thank you for assisting her to participate in social activities with her peers.

If I was able to, I would give each and every one of you a pay raise. But alas I am not able to do this.

What I can do is offer you my heartfelt gratitude for everything that you all do for both O and L.

I am truly thankful for all that you do for O and L.