What Makes a Great Advocate?

The moment that we received L's, and then O's, Autism diagnosis, Daddy Superhero and I started on a new journey - becoming advocates for our little superheroes. We could have easily employed the services of an Autism advocate but we know our little superheroes the best.

Being an advocate means that I am assisting my little superheroes to access the services and support that they need both at school and in the community. Until they find their own voices to self advocate, I am their voice.

As I have mentioned in a previous post, being an advocate for my little superheroes is very rewarding but it is also hard work at times. Being an advocate can take you out of your comfort zone if you do not feel confident in speaking up for another person.

Families are generally the best advocates for their children but at times, parents may not physically have the time to attend meetings for their children or they not feel comfortable with the idea of any potential confrontation. If families are also on a learning journey with their children, they may not feel confident in knowing what supports that they should request for their children.

So if you are not confident in being your own or someone else advocate, what qualities should you look for in a great advocate?

Ultimately, advocacy is about speaking on an individuals behalf, and supporting the best interests of an individual while promoting and protecting the individuals rights.

Not all advocates are the same - the role that they play will vary according to any training and study that they have undertaken, their experience in both an advocacy role and with Autism as a whole, and they may have expertise in different areas (education, social, with different disabilities and so on.) 

Anyone can assume the role of an advocate, but the strongest advocates are those who have a direct relationship to those who they are advocating for. That relationship could be that they are a relative of the individual or it could be that they have direct experience with the individuals disability.

In regards to an Autism advocate, the individual should understand and know that Autistic individuals are capable and bring enormous value  to their community. An Autism advocate should know and understand that all Autistic individuals are unique from the next. That the supports that suit one Autistic individual may not suit the next.

A great advocate will want to assist you to become, and assume, the primary advocate role in your child's supports. Through assisting you to advocate for your child, they should provide you with the skills to begin feeling confident to advocate effectively for your child.

They won't make the decisions for you, rather they will assist you to become well informed about your child's needs. They should assist you to consider and weigh up the best options for your child. A great advocate should empower you, and your child, to make the best decisions for your child.

A great advocate should be able to investigate and explore alternative support services for your child. They should be familiar with local therapy services that are available and that would suit your child's needs. They should also be able to point you in the right direction of support services for yourself as a carer.

A great advocate should listen, truly listen, to you and your child about what their needs are, what their goals for the future are and any skills that your child would like to improve on or develop. 

Advocates can be the important link between families and service providers. A great advocate should maintain a professional, respectful and collaborative approach when meeting with yourself and your child, as well as when they are engaging service providers on your behalf. They must be able to communicate with strength and clarity so that needs of your child are met.

When you meet with any potential advocate, you need to feel as though you are connected with them. You will need to have trust and confidence in your chosen advocate that they have your child's needs in mind at all times when they are performing their role. Don't be afraid to meet with several potential advocates prior to engaging them as an advocate.

And above all, trust your gut instinct as sometimes this tells us more about how we feel about some one than any information they give us.

Be the Change that You want to See

Just recently a number of Autism advocates have been shamed, ridiculed and bullied on various social media sites. Some are self advocates and some are advocating for their children. Some have been forced to shut down their social media sites due to the level and intensity of bullying that is being thrown at them.

Those who are self advocating have found their voice and are able to do so. 

In my case, my little superheroes are 9 years of age and 6 years of age. They've yet to find their voice to be self advocates. So until they are capable of speaking up for what they need, I am their voice. There are many other parents and carers who are in my position and who speak on behalf of their children. Some of these children are young children, some are adults. The children (or adults) that we advocate for, have yet to find to find their voice.

All of us who are advocating for either ourselves or our loved ones are doing so for one reason. And one reason only.

We want to bring Autism from out of the shadows and into mainstream society. We all want to spread a little Autism awareness and acceptance far and wide.

And to do that, the bullying and silencing of others needs to stop. The shaming, the ridiculing and the ostracizing also needs to stop. Pronto.

We need to spread Autism awareness and acceptance with love, respect and adoration. We need to remove the shame, the sorrow and the fear.

The longer that the bullying and the ridiculing of others who want the same thing as us continues, the longer that Autism will be seen in a negative light in society.

Every marginalized group in history has faced, and often still is facing, this challenge. They're seen in a negative light by society and this breaks my heart. And sadly nothing will change until we are supportive of each other.

Find the courage to speak up for yourself or your loved ones. No matter what group you are part of, be the voice that you or they need. Be the change that you want to see in this world.

We're in this together. Let's be supportive of each other and spread awareness and acceptance far and wide.

Being Me - My Authentic Self

I've recently received a message that this blog should not exist because I am not being my authentic self through my writing. To add insult to injury, the messenger went on further to say that I am not qualified to be giving advice to anyone.

Ah, excuse me? I beg to differ.

If you examine the term "authentic self" there are two sides of ourselves that we present to others. There is our own personal truth and our social mask.

Our personal truth is what we really say, think and feel about ourselves when no one is watching or when we are around our closest family and friends. When we are our authentic selves, we are showing our personal truth to the world.

Our social mask is what we show to everyone else. We might put our best foot forward. We may put all the positive points forward and hide the negative points out of sight. Our social mask is making ourselves appear to be perfect. When we put on our social mask, our authentic self is hidden from sight.

And therein lies the flaw in the email that was sent to me.

What you see and read in this blog is me. What you read is my personal truth. It is my families personal truth.

In 2016 when I started my blog and social media pages, I set out to share our families Autism journey because I was struggling to find support. I needed to clear my mind of all that we as a family - O, L, my husband and myself - were experiencing on this journey.

Through my blog I wanted to share the good, the bad, the highs and the lows and everything in between about our Autism journey. Writing is like therapy for me.

Through my writing I do not hide anything. There have been many a time that I have felt like I have failed my children as I haven't been able to get them the support that they need. There have been times that I have been so overwhelmed by our life that I want to disappear but I haven't because my children need me.

I don't have a spotless house as that isn't the most important thing in our life. My husband and my children more important. If you come to see the house, you've come to the wrong place.

I don't hide my flaws nor do I make any apologies for my flaws. We all have them and if you believe that you are completely flawless then I call your bluff. No one is flawless.

Our life is far from perfect but we get by. In our house there is an abundance of love and support of each other and that is all that matters.

No matter what journey we are on, as a family or as an individual, we all need to know that life is not perfect. We all need to know that everyone has highs and lows. We need to know that is no such thing as a perfect life. There are elements in life that are perfect, but there are also elements that are not so perfect. They go hand in hand.

By showing this side of our life, I am showing you my authentic self.

Since starting this blog, I have had parents, carers and families from all walks of life, express their joy at finding my blog. They are realising that there is support out there. They are realising that other families are experiencing the highs and lows that they are experiencing.

I have received messages from families, teachers, carers and individuals asking for advice on various facets of Autism. In the majority of cases I have been able to give advice. In some cases I have been able to point them in the direction of someone more qualified. In all cases, they have been very thankful that I have been a listening ear to them.

I feel qualified to give advice because I have over 20 years experience in working with children both ASD, other special needs and NT children. I've participated in many courses and workshops on Autism, positive behaviour supports and many other topics not only for the benefit of my own children but to also better my knowledge. The more I know, the better equipped I am to assist my own children.

I have two children who have both been diagnosed with Autism Spectrum Disorder. I have two children whose Autism is vastly different from each other. In my house, I can see that Autism is in fact a spectrum!

In my blog, I keep it real. I give advice that is easy to understand and easy to implement.

What you read is my authentic self.

Being an Advocate.

There is a chain of thought circulating in the Autism community, mainly from Autistic Adults, that parents especially if they are Neurotypical should not be advocating for their Autistic children.

There are a number of groups on various social media sites where this topic of being an advocate is commonly discussed. And let me say that the discussions have become very heated very quickly. Particularly when a parent, who the Actually Autistic members believe is a Neurotypical, comments. Oh my, it is one way to get members fired up!

The thought chain is that an Actually Autistic adult should be advocating for Autistic children or that the Autistic children should be advocating for themselves because no one knows Autism better than an Actually Autistic individual.

Now I have a huge issue with this topic and here is my counter-argument!

These Actually Autistic adults know their Autism, they don't know a thing about my little superheroes Autism. Quite often they will admit that they don't yet have children as well.

So what gives them the authority to tell me how to parent my children? What gives them the authority to tell me that I should not be advocating for my children?

Firstly - I'm not Neurotypical. I may not have an official ASD diagnosis but the comments from my little superheroes psychologists and pediatrician is that I am on the spectrum. So technically speaking, I could be considered as Actually Autistic.

Secondly - Sure Actually Autistic (with a confirmed diagnosis) adult community, I'm going to allow someone who knows absolutely nothing about my children be their advocate. Because that would work really well. Not.

Thirdly - If I allow my little superheroes to fully advocate for themselves, I know what the outcome would be.

L will advocate for no school. Ever. He is enjoying school but there are still days when he just does not want to go. His days would be filled with no school, watching his beloved superheroes on television, lots of trampoline time and Nutella sandwiches.

O would go to school and it would be all about science, maths and reading. And if she wasn't at school, she'd have her nose buried in a book. There would be very little social interaction.

At the present moment in time, both O and L have voices but they've yet to find their self advocate voice. They're yet to gain the ability to stand up for what they need to succeed at school and in the community around them.

Don't get me wrong, the best people to be driving conversations about Autism are individuals who have been diagnosed with ASD. But when it comes to being an advocate, an Actually Autistic adult is not necessarily the best person for the role.

As their Mum, I know my little superheroes better than anyone else - well, so does Daddy Superhero. We as their parents are their best advocate.

I always talk with my little superheroes and gain their input. I gain their opinions, their ideas and their thoughts on most major decisions involving them. I ensure that they are speaking for themselves as much as possible and that their needs are being heard. That is what advocacy is. I am not speaking for them, I am speaking on their behalf.

I may not be able to see, think and feel how they see life but I do know their Autism.

I know my little superheroes Autism better than their teachers and therapists and anyone within the Actually Autistic community.

And if you look it at this topic from another angle - it is incredibly offensive for an individual, regardless of whether the individual is Neurotypical or not, to tell a parent how they should be parenting their children or to tell them that you think that what they are doing is wrong. This is inappropriate and totally uncalled for on all sorts of levels. If you would take offense at being told how you should or shouldn't raise children, please do not tell a parent that they shouldn't be an advocate for their child.

So to the Actually Autistic community, no matter what you say or what insults that you throw at me, I will continue to be an advocate for as long as O and L need or want me to be in that role because at this present point in time, I am the best person for the role as their advocate.

Why? Because that is my role as a parent. To be an advocate for my children.

Dear Teacher!

Yes, of course, you can ignore all the visual aides and sensory tools that we send to school for use with my children. Said no parent of an ASD child, ever!

I am growing rather tired of having the same conversations over and over again.

And it all has to do with the fact that apparently my children do not fit the mould of people's perceptions of what autism looks like. Pray do tell, what does autism look like?

So here is an open letter to all teachers in the future that may teach my little superheroes, or any other children for that matter, who require the use of visual aides or sensory breaks in class!

Dear Teacher,

My child has been placed into your class for this school year and as such I am putting my trust in you, that you will do the right thing by my children. Both of my children are eager little learners but there is a slight difference between my children and the other children that have been placed in your class.

You see, my children have autism, sensory processing difficulties and they learn differently to other children in your class.

First up, can you please place what you know about autism into the back of your mind - keep it somewhere easy to access but not directly at the fore front of your mind when you meet my child for the first time. You see there is a saying that goes "so you've met one child with autism, you've met one child with autism."

Every individual who is on the autism spectrum presents differently. Please don't assume that you know everything about autism based on your previous encounters with children who are on the spectrum. You know about how those children present with autism. You know very little about how my children present with autism. By the end of the school year you will know about how my children present with autism.

Just because my child doesn't fit into the idea, the perceptions, that you have about autism, doesn't mean that he will be able to cope in your classroom without assistance. Yes both of my children are verbal, but that does not mean that they understand your instructions. You may need to walk my child through what you want him to do. You may need to provide step by step instructions.

Every child has a different learning style, my children are no different. Both of my children are visual learners. Both of my children benefit from the use of visual schedules, social stories and visual choice boards in class.

My children's Occupational Therapist and Speech Therapist have put a lot of time and effort into creating numerous visual aides for us to utilise at home as well as for you to use in the classroom. 

The great thing about this is that you do not have to prepare any visuals, we will provide them all for you. All that we ask is that you actively use them in class with my child. Please do not put them in a basket and think that my child will access them by himself - he does not yet know how to independently use them. You will need to prompt him to use them.

These visuals make my children's lives a lot easier for them to understand and manage. When you start utilising them in your classroom, I can guarantee that you find teaching my child a much easier task.

We will also provide a sensory tool kit for my children to use in their respective classes. Both of my children enter into sensory overload on a regular basis. You may or may not notice when this occurs but believe me, we see the fall out at home after school. Every day.

When we say that they have had a rough afternoon, evening or night, please believe us. We do not make these things up for the hell of it. Just because you have not witnessed a meltdown at school, doesn't mean that they don't occur. You are more than welcome to visit our house anytime after three thirty in the afternoon after school on any school day to witness a meltdown. Please be warned, meltdowns are emotionally, mentally and physically draining for everyone.

My son needs regular sensory breaks to keep himself on track. Please let him have these sensory breaks. There is even a sensory break choice board for you to use.

Please let my children keep their sensory tool kits in an easily accessible place in class where they know where it is kept. A sensory tool kit is no use whatsoever when it is hidden from their sight. And heads up, if it is hidden from them, neither of my children will ask to use the sensory tools. It simply does not occur to them to ask.

Again you will see the benefits for allowing them to use their sensory tool kits in class.

I will apologise in advance if you feel that I am over stepping my mark as a parent, but I am my children's advocate. Neither of my children have yet found their voice to be their own advocate, so in the meantime, I am it.

I look forward to this year and hope that you enjoy having my child in your class.

Kind Regards,

This concerned Mumma Bear!

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.

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 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!

Why being an advocate is hard but also rewarding.

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

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

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

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

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

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

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

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

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

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

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

BUT

Being an advocate is also a very rewarding experience.

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

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

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

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

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

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

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

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

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

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

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