Saturday, 9 June 2018

Why I Do Not want to Diagnosed with ASD

From the moment that we received L's and then O's ASD diagnosis, I began to question what I knew about my life and how much I really understood about myself. 

As I have mentioned in previous posts, I have had many struggles as a child, a teenager and young adult with anxiety, social interactions, understanding the behaviour of my peers and so on for as long as I can remember. I have always felt different from my peers but could never put my finger on what the issue was.

It was during O's assessment sessions that I really began to ask questions of myself, reassess how I felt about myself and what I knew about myself.

O is my mini me. She reminds me so much of myself at the same age. She always has, and I dare say she always will. Her struggles, her anxiety, her highs and lows - oh my, it really is like looking in the mirror at my younger self. 

When I was answering questions from O's psychologist and speech therapist, I began to realise that if I was asked the same questions about myself, I would be giving the same responses about my own struggles.

When I have broached the subject with the various specialists that we've had to see for O and L, I have been told by the specialists that they unequivocally believe that I am on spectrum.

However I have no desire to seek a formal diagnosis.

At this point in time, other than having it confirmed officially and receiving a piece of paper in my hot little hands, I honestly can not see the benefit for myself.

Yes, it would be good to officially know. It would be good to be able to say that all of my struggles as a child, teenager and young adult were due to the fact that I really didn't understand social interactions because my thought process was different from those around me.

But  other than that what will it prove.

I don't need assistance now. I don't need therapy to assist me to function successfully in life. I have learnt all of those skills over the last few years.

I would prefer to put all of my time and energy into assisting my little superheroes to provide them with the skills that they will need to navigate through life.

I don't want to see them struggle in the future with social interactions, anxiety and potentially depression as a result of the impact of these struggles.

I know first hand how it feels to struggle as a result of not understanding social interactions. I want to set up my little superheroes to succeed at anything that they set their minds to.

So while it would be great to have a diagnosis simply for my own peace of mind, my priorities lie elsewhere.

I don't want to dwell on the past and the what could have beens.

I want to look towards the future and the endless possibilities that lay ahead for my little superheroes.

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.

Wednesday, 25 April 2018

Autism is for Life, part two!

This is the second video in my Autism is for Life series - it features children, teenagers and adults who have all been diagnosed with Autism Spectrum Disorder. April world wide is Autism Awareness and Acceptance month.

There are many myths and stereotypes floating around about Autism. In this video I wanted to show that Autism is for life - children, teenagers and adults all live with Autism. 

Autism is for Life.

Autism does not miraculously disappear when an individual turns eighteen years of age. Individuals may learn different strategies that they can use in different situations and environments. Some individuals may learn how to appear "normal," whatever that may be, so that they don't stand out from the crowd. But the Autism is always there.

Children who are diagnosed with Autism, grow into adults who are living with Autism. All individuals need support and love. They all want to be accepted for who they are.


Sunday, 22 April 2018

Theory of Mind and Autism

Over the past few years since we received L's and then O's ASD diagnosis, I have heard a lot about and have read a lot of articles that focus on the idea that individuals diagnosed with autism lack Theory of Mind.

I've very briefly touched on Theory of Mind in a previous post so I thought that it was time for a more detailed post on this subject.

Theory of Mind, or ToM as it is often written, can be briefly defined as having an understanding that the minds of others are different from our own. In particular the understanding that other individuals have different thoughts, feelings and perspectives than our own. Theory of Mind provides us with the ability to put ourselves in the place of others to try and figure out what or how they may be feeling or thinking at any particular moment in time.

Theory of Mind is crucial for us all as we navigate through social interactions. We use Theory of Mind when analyzing, judging, and making calls on the behaviour of others. We use Theory of Mind to predict the behaviours of others based on what we think that they might be thinking. For example Theory of Mind assists us when we are empathising with someone who is having a tough time, even though we may be having a great day.

Every time I hear or read about Theory of Mind, the same example is shown or spoken about. It is called the Sally-Anne task. In the Sally-Anne task, a child must determine what another child's response would be as to the location of an object. One of the examples that I have seen is that Sally places an object into a hiding spot and then leaves the room. Anne then moves the object to another hiding spot. When Sally returns to the room, the child (who is observing this) must indicate when Sally WILL look for the object.

If the child's Theory of Mind has developed, the child usually answers that Sally will look in the original hiding spot as she is not aware that the object was moved after she left the room. In terms of a developing Theory of Mind, this is the response that researchers are looking for.

If a child's Theory of Mind has not developed, the child will usually answer that Sally will look in the other hiding spot. That's the last spot that THEY spotted the object in so therefore they think that Sally will know that is where the object is hidden. 

In typically developing children, Theory of Mind usually begins to emerge between the ages of 4 and 5. During this period, children typically start to think about other children's thoughts and feelings. In the Sally-Anne task, researchers have shown that the responses of children under the age of four years, is inconsistent. Whereas the responses of children aged 4 to 5 years, become more consistent in that they understand that while they have seen where the object was moved to, Sally didn't.

Theory of Mind continues to further develop as a child grows older. For the next few years, they learn to predict that what one person feels/thinks about a topic is not necessarily the same as the next person. As Theory of Mind further develops, children begin to understand complex language that relies heavily on Theory of Mind such as lies, sarcasm and figurative language.

There is a train of thought that our Theory of Mind is constantly developing even as adults as we have more opportunities to experience life, and observe people and their behaviour. I tend to agree with this.

So how does Theory of Mind relate to Autism?

It is thought and has been shown that Theory of Mind doesn't develop fully in individuals diagnosed with ASD until much later in childhood. In some cases, Theory of Mind doesn't begin to fully develop until individuals reach adulthood.

The reason behind this thought is that most individuals who have been diagnosed with autism, lack the awareness that others can have different thoughts, beliefs, opinions and so on from themselves. Individuals diagnosed with autism need to work much harder to develop their own Theory of Mind.

Well, O and L are both examples of individuals whose Theory of Mind is still developing. Yes they are only 9 and 6, but compared to typically developing children O and L's Theory of Mind is still in the developmental stages.

At the age of 9 O is well aware that she thinks differently from others in that she thinks in pictures and sounds, but she struggles to put herself in others shoes in relation to the idea that not everyone thinks and feels the same as her. She is developing more skills in this but she also still struggles.

Both O and L struggle to interpret particular social cues especially the non-verbal cues that we all take for granted that are scattered throughout social interactions.

As a young child, L exhibited inappropriate reactions and responses to others emotions. He often would not respond to us or to O when we were sad or angry. He wouldn't respond when we were happy. And if he did respond, it would be a totally inappropriate response. He still occasionally struggles with his responses. The look on his face now is that he knows he should respond in some way, he just isn't sure how to respond.

For a time O also struggled with this. One example that I can recall vividly is when I took her to watch the movie "The Good Dinosaur" at the cinemas. All throughout the movie, particularly in scenes that I thought were quite sad, O was laughing her backside off. In fact she thought that the entire movie was quite hilarious. Meanwhile other movie goers were crying during different scenes in the movie. Although they did end up laughing due to how loud O was laughing!

O struggles in responding the social expected way when someone says hello, good morning or good afternoon to her. If you are in the place where you are meant to be, ie: at home, she often won't respond. You're where you are meant to be, in her mind, she shouldn't need to greet you. However if she spots you in a setting where she doesn't expect you to be, then you can expect a completely different response.

O struggles to understand why children her age say one thing and yet they mean another.

L still struggles to show empathy towards others. And yet O on the other hand can be over-empathetic at times. She lacks the understanding that at times there is such a thing as too much cuddles. I've lost count of the number of times when we've had to remind her that the child she is cuddling, really doesn't want to be cuddled anymore, which is why they are struggling to get away from her!

Both O and L regularly cause frustration in each other and in us when they say "Do you know where the thing is?" or "Did you see that?" What thing?????? At times they simply do not comprehend that we either didn't see something happen or that we haven't seen the toy/book/object that they're referring to. We constantly have to remind them that they need to describe said object or toy or movie scene that they're referring to so that we know what they are talking about! Although I have a feeling that this is all children in general but it does relate back to a child's Theory of Mind!

All of the above examples can be indicators that a childs's Theory of Mind is still developing.

So how can we assist a child's theory of mind to develop? How can we help a child to tune into the thoughts and feelings of others as well as tune into their own thoughts and feelings?

When talking with O and L, we talk about how we feel or what we are thinking in particular situations. This gives O and L a different perspective on what they might be feeling or thinking at that particular time. It begins to embed the idea that others DO think and feel differently than them.

When we see other people experiencing different emotions, we talk about why they might be feeling happy or sad. We provide O and L with the language that they may need to describe how they are feeling.

When we read books we talk about how and why the different characters in the story might be feeling or what the characters might be seeing in the story. Doing this helps my little superheroes to put themselves into the shoes of others. We'll then often relate how the characters are feeling back to a time that O and/or L were feeling that same way so that they begin to understand that other people have the same thoughts and feelings as they do.

We encourage both O and L to engage in role play games and if we are included in the game, we step out of the parent role and into the role that we're playing in the game. Role playing in itself assists in developing a child's Theory of Mind as it encourages the child to think and act out the role of the person that they are playing. They have to actively think like the other person.

Just simply talking with O and L about how we all feel and think provides the opportunity for them both to think deeper about their own thoughts and feelings. Talking embeds the idea that others have different thoughts and feelings from their own. It also begins to embed the idea that the way we all act is often based on what we think and feel.

All of these strategies assist in the development of O and L's Theory of Mind.

But one of the most important strategies that we keep in mind at all times is that the emotional perplexing behaviours that O and L often show are not done deliberately. They're done to communicate the difficulties that they are both having in understanding Theory of Mind.

Tuesday, 17 April 2018

My Mummy IEP reviewed.

In April of 2017 I published a blog post titled "My Mummy IEP!"

If you haven't heard of an IEP previously, an IEP or an Individualised Education Plan is a document that is developed by teachers and other education professionals in consultation with the parents for children with special needs.

The IEP outlines goals for the child to work on at school in the areas of education, social, physical and/or behavioural difficulties. It is an in depth document and really is vital for a child's academic success at school.

IEP's are meant to be evaluated, reviewed and updated on a 6 month basis so the time  for my IEP review is well and truly overdue!

Objective 1: To complete the household laundry in a timely manner.

Goal 1: Minimum progress is still being shown in regards to taking the wet washing out of the washing machine once the cycle has finished. The latest load has been washed three times this week thus far and it is currently sitting in the dryer waiting to be hung on the line!

A Behaviour Intervention Plan has been implemented with little success! It is suggested that the Behaviour Intervention Plan be modified to include hot coffee, a glass of wine or a chocolate or two.

It is suggested that a Shared Responsibility Plan be implemented so that all members of Superhero Headquarters can assist in clearing the washing machine.

Goal 2: Progress has been shown in regards to hanging the washing out on the washing line in a timely manner. Although there has been some improvement, a little more effort could be shown.

Goal 3: Progress has been shown in regards to bringing the washing in from the line once it is dry. This has been helped with the fact that if the washing is not brought in, the bats flying around at night will poop on the washing! Not a pleasant sight or smell!

Goal 4: Minimum progress has been shown in regards to folding the washing. Many a times the little superheroes  have been observed embarking on a mountain trek to retrieve their clothes!!

A Behaviour Intervention Plan has been implemented with little success! It is suggested that the Behaviour Intervention Plan be modified to include hot coffee, a glass of wine or a chocolate or two. It is suggested that a Shared Responsibility Plan be implemented so that all members of Superhero Headquarters can assist in folding the washing.

Objective 2: To sleep in own bed.

Goal 1: Minimum progress has been shown in regards to sleeping in my own bed. Numerous behaviour intervention  plans have been implemented for all members of superhero headquarters to no avail. It is suggested that a team meeting is held so that this goal can be re-evaluated and a new goal be set because this Mummy really needs to achieve the sleep level that she requires to be a fully functioning member of society instead of the Mummy zombie that she currently feels like! Although this goal of sleeping in my own bed may be a bit too ambitious so perhaps it should be omitted completely and substituted with a goal of simply getting some sleep!

Objective 3: To check the little superheroes school bags on a daily basis.

Goal 1: Progress was being made in regards to this goal until a week ago when a nasty surprise was located in a certain little superheroes school bag. Luckily the surprise was contained within a lunch container. However the smell was gag inducing and as such the container was thrown out! It is suggested that a team meeting be held to remind the youngest members of Superhero Headquarters that stashing food in their school bags does not make for a pleasant surprise!

A new objective needs to be added to my Mummy IEP, please see below.

Objective 4: To remain calm instead going bat poo crazy!

Goal 1: To remain calm and level headed when the little superheroes are doing their very best to make my head spin around. This needs to be achieved a minimum of 4 out of 5 times with 75% accuracy.

Date Started: Too many years ago to mention.

Date Mastered: Minimum progress has been shown thus far. A Behaviour Intervention Plan is recommended that consists of deep breathing exercises and counting to ten. A reward system is also recommended to be put in place to earn rewards such as a hot coffee, chocolate or a glass of wine.

Shared Responsibilities: All members of superhero headquarters need to be accountable for their actions in spinning Mummies head around! It is recommended that a visual board with prompts  be established and then scale back the prompts as progress is shown because to be perfectly honest, this may be a bit too ambitious.

What would be in your IEP if you were to compose one?