Wednesday 9 May 2018

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.

Saturday 5 May 2018

A Boy Named L.

I want to tell you a story about a boy named L.

A boy who struggles when his routines are changed. A boy who has always wanted to play a team sport but his anxiety and sensory processing difficulties have always stopped him.

Several years ago, L expressed his interest in playing rugby league. We found a club who were willing to have him as a member of one of the junior teams and joined him up.

L was ready and raring to go. He went to and participated in every single training session and thoroughly enjoyed the sessions. He'd often run off and join another team that was training but he was at the field.

But when it came time for the weekly matches, it was a completely different story. When the matches were held at the home ground, we'd be able to get L to the games and he would go and stand near field but the sheer number of people watching the game and the noise would send him into sensory overload. He'd end up retreating into himself and hiding behind one of us or he'd run off from the field.

When the matches were held at away grounds, L did not cope with the change. This wasn't where he trained so in his mind, this was not where his games where, even though he could see all his team mates at the field.

For the entire league season, L played a total of about 15 minutes on the field. We wrote social stories, we took photos of all of the away fields but nothing seemed to help him. So we stopped going to rugby league as it was too distressing for him.

Jump forward to 2018 and L expressed an interest in soccer.

After his experience with league we weren't sure how he would go but he was even more insistent that he wanted to play than he was with league. We found a club that openly said that they were special needs friendly. This time we were armed with a publication called "Autism in Sport" which has been specifically written for coaches which we've given to L's coach to read through. Both myself and Daddy superhero were well prepared that we'd possibly have to be actively involved in the training sessions and the games.

We are about 6 weeks into the current season. L has gone to and participated in most of the training sessions but he's yet to play a game. On all the previous games, his anxiety has set in about the change of field or the crowds and he's not wanted to go. From our experience with league we haven't wanted to push L out of his comfort zone.

Well that changed today.

It was a home game for both O and L, so we suggested to L that we go along to the game just to watch his team play. This he was okay with.

When we arrived at the field, his coach gave us a team shirt for L to wear. This he was not okay with. The shirt was thrown, tears were had and L retreated into himself.

Until about ten minutes into the first half when L told me "I wear shirt now?"

Sure buddy. I suggested to L that I could go onto the field with him if he wanted to play (which the coach was fine with) to which L replied "Nah, I do a self!"

And off he went. I started to follow him but he physically pushed me off the field telling me "No, I do on me owen!"

I can honestly say that my eyes were watering a little with pride as I watched him run off onto the field without either myself or Daddy. I was also honestly expecting him to run off of the field a short time later.

But nope, my little man found his bravery and joined his team mates on the field.

He did come off for short breaks and drinks of water. He came off to get his soccer socks and books put on. He chased the ball down. He did some huge kicks of the ball. He tried to stop the other team from scoring goals.

L stayed on the field, in the game, for over 20 minutes.

Keeping in mind that when he played league, he only spent a maximum of 15 minutes on the field for an entire season, 20 minutes in a single game is a huge step for L.

And when the game finished, L said "I had fun. I going to play more."

From his efforts today, I have no doubt that by the end of the current season, L will be playing full games.

Then to top his morning off, his coach awarded L the player of the match award for not only overcoming his fears to play in his first match but also for being a great team player.

Well done L, no words can ever express my love for you and just how proud I am of you. You are a little superstar!

The future is looking very bright L, very bright indeed.

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.