Saturday 28 January 2017

Did you know ...... my boy is not naughty.

To the elderly man at the supermarket last week who took it upon himself to growl at L and then tell L that he was a very naughty boy. Do you realise just how sacred you made L feel?

To the mother who openly ignored my child as he was trying to say hello to you and your child and who then said to a mutual friend “that L doesn’t have Autism, he is naughty and his mother can’t control him. Period” Do you know how much you deflated his self-confidence by ignoring him?

To the mother who glared at me when L was having a moment and then told her own son “I don’t want you to play with that boy, he is very naughty.” Do not call my boy naughty.

Do not judge L’s behaviour based on your one chance encounter with us. You saw L when he was at his most vulnerable and you have judged him on that.

L is not a naughty boy, he has Autism.

You just happened to notice L’s  behaviour when he was overwhelmed by his surroundings and had entered into sensory overload.

Did you know that Autism is called Autism Spectrum Disorder? Did you know that ASD encompasses so many different attributes but not all individuals diagnosed will present with the same traits?

Did you know that my heart breaks every time either of my children are so over stimulated from their surroundings that they enter into a sensory meltdown? Do you know how mentally, physically and emotionally exhausting a meltdown is?

Do you know the difference between a tantrum and a meltdown?

Do you know what sensory overload is?

Many individuals on the spectrum also have sensory issues and these issues affect how they process the environment around them. Sensory issues can make noise, lights and sounds seem so much more intense to an individual on the spectrum. And at times the only way that they can communicate how they are feeling is through a meltdown.

Every time they leave their home, their safe haven, they are entering an unfamiliar ever changing territory where they can no longer control what happens.

We have learnt how to minimize the impact of such environments to L, but at times he still struggles. The one thing that I can’t protect him from, is ignorant comments from individuals like yourselves.

So on behalf of L and others like him, please think before you make a comment or pass judgement on their behaviour.

We need support, not your negative comments.

A smile or nod that you understand means more than you will ever imagine.

Wednesday 25 January 2017

Dear Teacher

Dear Teacher/s,

It’s the beginning of another school year and you are about to have one of my children as a student in your class. I am very happy to know that my children are in your class. I’m sure that you have chosen your profession because you love working with children and have a passion for teaching. There are a few things that you will need to know about my children before they start in your class.

L will need your patience because communication can be difficult for him at times. At first he may not talk to you, he will make sounds and point and make side way glances at you. This doesn’t mean that he doesn’t like you, he is just getting to know you. He will learn to trust you, but it may take time. Once he trusts and feels safe with you, he will climb all over you and ask for random cuddles, all the time! He will want to know where you are going and where you have been!

You might have heard that children with Autism cannot show emotion. This is a myth. Both my children show emotion, L is learning empathy and he has come a long way in the last 12 months. At times both my children will show extreme emotions and you will know immediately when they enter your classroom if they are happy, sad, angry or anxious. If you take a few minutes to work out any challenges that they may be facing in that moment, it will save a lot of stress in the long run.

O will need you to understand that when she gets upset or starts to fidget, it isn’t personal she is just in sensory overload. At times L will need to get up and move around in class, he isn’t doing this to be naughty, he does this to refocus.

Please understand that meltdowns are not down on purpose, they are done to serve a purpose and in that moment, L or O may not be able to verbally express to you what they need or what is wrong. Sensory overload is significant and it may occur on a regular basis – there may be too much noise, smells may be overpowering, L’s clothes may be prickling him, O may be seated in a different spot. They are not being naughty, their senses are in overload and they simply can’t focus. A few minutes outside the classroom will help them to refocus.

Please don’t force L to make eye contact, this can be painful and very difficult for him to do. If you ask L “are you listening to me,” L will look at you briefly. He hears you just fine.

If O answers with “what” or “can you please repeat that” it’s not that she wasn’t listening, she is trying to recall a memory on how to answer you. Please don’t get angry at her, if you repeat the question then O will be able to answer you.

Both my children have strengths and challenges the same as all children. L has amazing gross motor skills and runs, at a very fast pace. He doesn’t run to be naughty, he runs to get away from sensory overload or when he wants to go and look at something. If L runs, you need to run. He will not stop if you call his name. Please remember, behaviour is done for a purpose not on purpose.

L is a visual learner, one of his challenges is understanding verbal instructions. If you show or demonstrate to L what you want him to do, he will get it. You may need to break down the steps of certain tasks for L - he still struggles with complicated steps.

O has an amazing dry sense of humour and loves creative writing. If O is sitting at her desk staring off into space after you have given an instruction, she may not have understood the task and her anxiety will prevent her from drawing attention to herself. Please go and ask her to repeat to you what the task is about. You may need to reword your request.

L likes to be in control, he always has been. Where possible please offer him choices, but offer choices that have the outcome that you want. That way you both get the end the result that you want!

Children with Autism can make friends however at times O struggles to understand social cues. She misreads or misinterprets situations which leave her feeling extremely anxious. O suffers from severe anxiety, what she worries and stresses about might seem small to you, but they are big issues to her. Please keep this in mind when she is in tears over a pencil.

Both O and L are very intelligent, please don't under-estimate their abilities. They may take a little while to get there, but they can do it. Given the right circumstances, they may surprise you at times.

The word "can't" is no longer in their vocabulary.

Thank you for all that you do and I look forward to building a working relationship with you. The last piece of advice is that the needs of both my children are the same as any other child in your class, they want to feel safe, secure and happy. They don’t want special treatment, they want to be accepted.

And if all else fails, L loves anything and everything to do with superheroes and O loves talking about space, in particular Titan!

ASD Mum xx

Monday 23 January 2017

Mindfulness and the Benefits for Individuals with Autism

When you hear the term “mindfulness” what comes to mind?

I’ve always thought that mindfulness and meditation were one in the same thing. I have come to realise that while the two are intertwined and that mindfulness is thought to have stemmed from meditation, they are decidedly not the same thing.

If you look up the definition of mindfulness in a standard dictionary it states: “mindfulness is i) the quality or state of being conscious or aware of something; ii) a mental state achieved by focusing one’s awareness on the present moment, while calmly acknowledging and accepting one’s feelings, thoughts and bodily sensations, used as a therapeutic technique."

During meditation you are striving to achieve a higher state of consciousness by focusing on a single thought or on a chant. Mindfulness on the other hand is where you aim to achieve an acute awareness of the world and your place in it. Mindfulness doesn’t take you away from the world, the aim is to place you firmly in it!

I’ve begun to think of mindfulness as exploring the world around me with a fresh set of eyes and having a moment by moment awareness of my thoughts and feelings.

Everyone can practice mindfulness from the very young to the young at heart and we’ll get to how you can practice it in a moment.

Mindfulness is thought to have stemmed from meditation and has been practiced for thousands of years. Mindfulness is thought to have origins in Eastern philosophy and Buddhist meditation but it has only really become popular in western countries in the last 40 or so years.

I’ve become more aware of the practice of mindfulness and the benefits that it provides to individuals with Autism through managing O’s anxiety.

Quite often Anxiety disorders go hand in hand with Autism. Individuals, particularly children, with Autism cope better with routine, consistency and schedules and if any of these are out of whack, then it causes them to overly worry about the world around them.

So why mindfulness I hear you ask? To understand mindfulness, we have to delve a little deeper into our thought process.

Whether we like to admit it or not, we all spend far too much time during each day worrying. You might worry about general everyday things like the traffic going too slowly as you’re on your way to work. You might worry about the big stuff like job security or about finances. We tend to analyze events that occurred in the past and may anticipate and worry about possible future events.

Children are no different, but their worries compared to those of adults are generally a lot smaller, but to a child the worry is huge. O worries about leaving belongings at school or day care, she worries about not understanding her friends, she worries about our pets. I am sure that her mind is constantly busy, telling stories and trying to interpret experiences that occurred during her day.

Worrying is a perfectly normal trait to have and it is something that we all do. But for some individuals, their worries seem to run away with them for no logical reason. When this happens it can stop the individual from appreciating and enjoying the here and now and if left unmanaged for too long, the worrying can spiral into anxiety and panic attacks.

And that is where we are now with O. She suffers from severe anxiety issues and I am sure that she has come very close to having a panic attack or two.

Mindfulness works because most of us can only fully focus on one thing at a time. When an individual is only concentrating on the sensations in their body, then conscious worry should not be possible and as such needless anxiety and stress cannot burden them. Well that's the theory!!

Some professionals have the belief that mindfulness is not something that we are born with but if you look at babies they seem to have the practice of mindfulness down pat. They are generally living in the moment and are happy to sit and watch the world go by. Babies will focus on only one thing at a time and they take joy in the simple things. Babies explore every angle of their food before it enters their mouth. Babies are practicing mindfulness without ever being taught how to practice it.

I think that when we are children we begin the process of worrying and this ability to be mindful all the time slips away from our grasp. So in my mind, mindfulness is a skill that needs to be practiced, re-developed and refined. We need to remind ourselves of being mindful in our day to day routines.

I personally think that mindfulness is awesome because you can practice it anywhere and anytime – if you sit down in the middle of your work place and start meditating, it might be frowned upon, however if you are sitting at your desk, then practicing mindfulness without disturbing anyone is quite easy.

There are many benefits of practicing mindfulness and not only will the practice assist yourself, it will also benefit your child. Being mindful of their surroundings will help to clear your child’s headspace and assist them to refocus on the task at hand. With practice your child will become more aware of themselves, they’ll be able to slow down their thoughts and tune out any distractions. It is thought that through practising mindfulness an individual is able to increase their optimism, happiness, compassion and empathy.

Practicing mindfulness means that an individual will become more aware of their own body, their thoughts and how their thoughts are making them feel. Being mindful could assist an individual in regulating their own emotions.

Some studies have even suggested the practicing mindfulness in the classroom could assist to reduce behavioural problems and aggression among students. Mindfulness would also increase their ability to pay attention for longer periods. Children can learn how to pause and respond to situations in the classroom and the playground, instead of reacting. This has to be good right?

In regards to anxiety, practicing mindfulness will assist an individual to switch their perspective from the all-consuming swirling thoughts running through them to their sensory perceptions of what is going on around them. And with practice, an individual’s emotional reactions could instantly deflate and the all-consuming panic could lose its power within seconds. Mindfulness would simply break the cycle of worry.
Quite often in the midst of an anxiety episode, the last thing that a child is capable of doing is switching off their emotional reaction. Imagine the empowerment that the child would feel if they knew that they had the skills to control their anxiety just by controlling their thoughts. That simply by stopping and taking some deep breaths, they can shift their perspective and can come up with a less emotional and more logical response. Imagine the power that the child would feel. Imagine how resilient your child is going to be just by learning how to practice mindfulness.

Sign me up, what do I need to do?


Have you ever noticed that children seem to be attracted to adults who are happy, they want to interact with you, play and simply be around you. However, if you're not happy, then the opposite happens. I think it is safe to say that adults who practice mindfulness would have a better influence on children. Those children would stand a better chance of becoming mindful themselves. Children who are constantly engaging with mindless adults are quite possibly going to become negative about themselves. I've seen how children react around mindless adults and it is a very sad sight - they're down on themselves, they lack self confidence and there is a lot of pent up anger.

If we’re going to encourage our children to practice mindfulness, we really need to practice what we preach!

If you are able to grasp the concept of mindfulness, you’ll be much more prepared when it comes time to impart the knowledge and skills onto your child. If your child sees you practicing mindfulness, then they may be more inclined to join you.

How you chose to explain mindfulness really depends on the age of the child, but the simpler you keep it, the better chance they will have of understanding what mindfulness is.

One way of explaining mindfulness is that you want your child to sit and pay attention to their thinking process. You could ask your child just to sit and listen to world around them, pay attention to what they hear. You could ask your child to pay attention to their breathing.

Start off small and work your way up. You don’t need a dedicated space to practice mindfulness, although if you have the space you could involve your child in creating a sanctuary where they can go to be mindful without being disturbed.

By making it a daily habit, mindfulness will become embedded into their daily routine and once it becomes a daily habit, your child will be able to take the skills with them into every day life.

There are many ways in which you and your child can practice mindfulness. The simple methods are paying attention during regular weekly activities like walking the dog, brushing your teeth, driving to work, concentrate purely on the task at hand and try to clear your mind of every other thought. You could give your child a mindful hug and be in the moment with them. It could be as simple as giving your child your full attention, no phones, no computer, when they are speaking to you.

Then there are more involved methods, these are a few that I think are beneficial…..
-        What can you hear? = Get your child to pay attention to the world around them just using their sense of hearing. What can they hear when they’re perfectly quiet? I do this at work on a regular basis with my Kindy children (ages 3 to 5 year olds.) When they need a break, when they need to calm down, I get them all to lie on the grass for about 3 minutes with their eyes closed and ask them to listen to what is going on around them. I’ve noticed a huge change in them all after we do this exercise, not only are they able to tell me sounds that even I don’t hear but they are calm afterwards. This exercise gives them the brain break that they need.

-        Anchoring = One of the books that we use with O when it comes to anchoring is “The Angry Octopus.” The idea behind the story is that the angry octopus learns to loosen up every inch of his body and mind starting with his toes and slowly going all the way up to his head. O is learning to squish every inch of her body before releasing the tension. There is a noticeable change in O after we have finished this exercise and she has much more clarity when reflecting on why she was feeling the way that she was.

-         Brain Break = I like the idea of a “Brain Break” during homework time and this is one that I am going to start implementing with O once school resumes. The idea is that while completing homework each day, stop your child, ask them to take a few deep breaths to calm themselves and their thoughts so that when they resume, their minds will be quiet and they can focus on the task.

-        The Art of touch = Take your child outside, get them to close their eyes, place different objects in their hands and ask them to describe how the object feels. Can they name the object? How does the ground feel beneath their feet? In this exercise, as you are removing their sense of sight, your child will have to concentrate on what they are feeling.

-        Just Breathe = Sit down with your child and get them to close their eyes. Ask them to breathe in for a count of 6 and out for a count of 10. This exercise lengthens and slows down their breathing and as such more carbon dioxide is released which has the effect of slowing the heart rate and calms your child down. This exercise is also very useful when trying to relax to go to sleep.

-         Finger counting = Another great breathing exercise is finger counting. Get your child to hold their hand up with their fingers spread out. Get them to put one finger at the base of their thumb and trace up their thumb slowly, then down the other side and then repeat for the remainder of their fingers. While tracing up a finger, breathe in and while tracing down the other side, breathe out. This exercise gives your child something to focus on and keeps their hands busy so that they can focus on breathing.

-         Heart to heart = With an older child, you could get them to describe to you what they are feeling and how their feelings make them feel inside? Where do they feel these things? This will help your child to recognize the feelings before the emotion becomes full blown. It will help them to experience and understand their thinking process and how their mind works. This is only going to serve to empower them as they will have some control over how they are feeling.
As with all new skills, mindfulness does take practice and perserverance. If you happen to see results shortly after implementing these tactics, then fantastic. If you don't, please keep perservering.

Just imagine the possibilities, the increased sense of curiousity and wonderment about their own thoughts, emotions and body sensations. The fact that your child will end up feeling empowered by the new sense of control over their own emotions is enough to keep trying.

If I can assist my children to develop a skill that will help them to connect to their own thoughts and feelings, then taking that 5 minutes out of my day, every day, the end result will be worth it.

And if all children were taught these skills during their childhood, wow, what a change we would see in just one generation.

If you are after any further reading on mindfulness there are some wonderful publications available, a few that we use are listed below. I do not receive anything for reccomending these publications or sites, they are just resources that we have found to be incredibly useful.

The Angry Octopus, by Lori Lite
The Mindful Child, by Susan Kaiser Greenland
Calming Your Anxious Child, by Kathleen Trainor
Be Mindful and Simplify your life, by Kate James
I Have A Worry, by Tanya Balcke

Kids Matter have loads of great resources and ideas for families.
Smiling Mind is a great FREE web based program that is designed to make mindfulness meditation readily accessible to people of ages and walks of life. This is one that O loves as she gets to "play" on my phone!!

Saturday 21 January 2017

Welcome New Friend! Welcome to the club!

Welcome to this crazy thrilling journey that is Autism, I'm so glad that you have landed here! It means that you are taking steps in the right direction to get your child the assistance that they so badly need.

Welcome to the club, whether your child has a diagnosis or you are just starting on this journey, you are welcome here. You are now part of a unique group of individuals, that people looking from the outside in, don’t think fit in with the traditional Autism community.

You may have noticed that there was something odd about your child from birth but you just couldn't put your finger on it, until now. It may seem to you that your child changed what seemed like overnight and you’re not sure how to explain it to medical professionals or to your friends and family. You may talk to your child’s teachers and they don’t seem to understand as they rarely get to see this other side of your child that you are explaining.

Your child may appear to have no issues with verbal communication or socializing and people around you will begin to question and challenge your child's diagnosis. Your child's autism traits may not be obvious to those around you, but there are glaringly obvious to not only you but also to those specialists who assessed your child or who have suggested that your child should be assessed.

Once upon a time, your child would have been diagnosed as having Asperger's, not anymore. Due to the updated diagnostic criteria, that term has been abolished and your child now falls under the umbrella of Autism Spectrum Disorder. Although people still use the term Asperger's or Aspie.

Your child won't change with a diagnosis, the diagnosis will give you a better understanding of who your child is, the diagnosis will explain why your child does certain things or behaves the way that they do. Post diagnosis, it is a like a huge "Ah Ha" moment, the light bulb goes off in your brain and it all starts to make sense and you may wonder "why didn't I see this before."

You may start to feel guilty about using the term “autism” when referring to your child. You may feel as though you don’t deserve the right to use that term when you see and hear about individuals who are non-verbal. Individuals who are having a harder time than your child.

Please try not to feel guilty, High Functioning Autism has its own unique challenges and it affects everyone. Our high functioning children need just as much support as others and they need access to therapy just as much as others who are on the spectrum. Don't let anyone tell you otherwise.

It may feel that you are constantly on a never ending emotional rollercoaster. One moment you feel as though your heart is breaking when you see that your child is struggling to fit in with her peers, the next you are rejoicing and celebrating all the small victories. You're wanting to cry on the inside when you get wind of the fact that your child has been teased or rejected by other children and then when your child makes a friend who just seems to get her, you want to jump, celebrate and shout it from the rooftops. Then there is the despair of being in meltdown mode and the absolute emotional, physical and mental exhaustion in the aftermath of a meltdown. And finally there is that fierce Mamma bear mode that you seem to morph into so easily when it comes to protecting your child.

Why are you so welcome here?

My 7 year old daughter is on the Autism Spectrum, on the higher end and many of the difficulties that she faces on a daily basis are hidden. We have two provisional diagnosis' and are waiting on the third to confirm our suspicions. It has been a long hard road to get to this point.

You cannot look at O and visibly see her autism. She does not stand out, she has never stood out. O is able to hide her difficulties so that no one else can see. She is able to mask her traits so that they don’t stand out, so that she doesn’t stand out in the crowd.

O will power through her day using strategies that she has developed and learnt but then she collapses in a heap at home at the end of the day because it has become all too much to handle. At school she will look you in the eye and say that “everything is okay” or "I'm fine" but that doesn’t necessarily reflect how she is really feeling beneath the surface. If you could step inside her brain for a moment, even just a second, you would notice that O is like a duck, paddling furiously to stay afloat.

She will play with her friends but will confide in us later that she has no idea why they said the things that they said, or why they acted a particular way. O struggles to understand other people in social situations. Sometimes she understands social situations, others she has no idea how to take a step into a group. It is a big leap of faith if you’re unsure of how to interpret how others are acting. It’s then that she prefers her own company or the company of younger children.

O loves to achieve, she loves to learn. O is a perfectionist. When she does something, she does it well and if she thinks that she hasn’t done a good enough job, she will beat herself up about it.

This all comes at a cost to her own mental health. It is mentally exhausting for her. The thinking, the extreme concentration and effort, the guessing and double guessing. O has a huge heart, and this is sometimes taken for granted and used by others. And at times when she has simply had enough and can’t give anymore, she ends up in meltdown mode. O doesn’t mean to be rude, aggressive or nasty. It is all a means of communicating to us how she is feeling at that moment in time.

She doesn’t have it in her nature to be rude. O is loving and considerate and caring. She always has been.

Our job as a parent is to help our children to figure out what is going on and find ways to help them. Doctors and therapists will provide you with advice but it is up to you to lead the way, to work out what is best for your child.

You’ll need to step up the parent role a notch and become an advocate for your child. Your child's diagnosis means that you will have a better ability to advocate for their needs, you will be prepared with the information that you are given about your child.

Everyone has a opinion about Autism, even those who know very little about Autism. You will need to navigate through the maze of knowledge and weed out the advice that you think is useful from the information that is not. You need to store the advice that you think will be useful for your child in your message bank.

There are so many options. Perhaps you’ll use a select few, perhaps you’ll use a combination. You may try things that don’t work that you need to discard. And then you’ll find things that do work and you’ll think “why didn’t we do that in the first place?” It really is a game of trial and error.

No one is perfect, that’s one thing that I can guarantee, so don’t beat yourself up. Try your hardest. You might fail, but never give up. We're all fighters in this club!

There may be days when you want to give in and quit. But you can’t because you love your child and would do anything for them. You need to help provide them with the life skills so that they will succeed You will need to assist your child to understand who they are and that Autism makes them different but in a good way. You'll need to assist your child to embrace their differences.

You’ll no longer take things for granted, like hugs and smiles and words like “I love you.”

At times it can be lonely to have a child on the autism spectrum. But then you meet other parents at therapy sessions and you realise that you’re not alone! You’re part of a special group of parents who understand each other completely.

Continue to love your child with the fierce protective mother bear, or papa bear nature that you have developed.

Do not let people underestimate just how amazing your child can be. Our children have the most incredible talents and they have so much to offer. They just go about things differently. They will get there, they just have to pave their own way and make little detours along the way.

Community understanding and acceptance has improved a lot, but there is still as long way to go. You'll be one of the ones leading the way in educating those who know very little about High Functioning Autism.

Every step that our children take on this journey takes courage, practice, effort and perseverance. I know that O will find her place eventually.

Until then we, and you, will plod along at our own pace. Along the way we’ll aspire for acceptance and inclusion. But not perfection.

And I’ll be there with you, the entire journey. Welcome to the club!

Wednesday 18 January 2017

Mummy, I think in pictures too!

We were watching a TED talk a few weekends ago by Temple Grandin, and O was fascinated by Temple when she was explaining how she thinks in pictures.

O turned to us and said “Mummy, I think in pictures too.”
When we asked her what she meant, O replied “Sometimes I think in pictures, sometimes I think in words and sometimes I think in music. But mostly pictures and music. That’s why I like to sing.”
When I asked O to elaborate she said “Pictures and music are easy to understand, words can be confusing sometimes.”
O recently confided in one of the Educators at the OSHC service that she attends that one of her doctors thought that she might have Autism and that she is scared.
When I asked O why did it scare her, O said “Because it means that I am different from my friends.”

Oh my baby girl, it does make you different but in a good way.

O is already becoming aware that she thinks differently to her friends. She has confided on numerous occasions that she doesn’t understand how or why her friends say the things that they do. O frequently asks “why do they chase boys?” This is one thing that I am in no rush to explain to O!
If you ask O does she have a boyfriend, she will respond with yes. But she doesn’t mean a boyfriend in the sense of a relationship, she means that she has boys who are friends. How I wish that she could stay this innocent.
I’ve watched O in social situations at school disco, parties and playdates and witnessed her inability to know how to take the step that she needs to take to join in with peers her own age. O is much more comfortable interacting and playing with children who are younger than her.
O has said that she likes going to pick up L from Tara’s school because she understands the other kids at the centre. And she does, she just fits in like she belongs there. There is no hesitation whatsoever when we arrive at Tara’s school with O.
It breaks my heart seeing her struggle and hearing her trying to make sense of what is going on around her.
So after the Temple Grandin TED talk, Daddy superhero and I sat down to talk with O about her suspected Autism - we have two provisional diagnosis' and are waiting on the third to confirm our suspicions. I can say that we were both very apprehensive about how O would react to this information, but we were certain that she needed to know.
We’ve previously talked with O about L’s diagnosis. We read the book “I see Things Differently” which explains Autism through a story. O has embraced L’s diagnosis and willingly helps him out whenever he needs her, which is quite a bit.
By the end of our talk, O seemed much more at ease. O now knows that Autism means that she thinks way, way outside of the box at times. We’re talking "standing on the edge of the precipice and needing someone to haul her back in to get back on track" outside the box.
O now knows that the reason she is so anxious at times is because of her Autism. O knows that while she struggles with some things, her Autism causes her to be exceptional at other things.

O said that maybe Autism gives her such a great imagination. O knows that Autism is one of the reasons why she is so creative. O knows that while she struggles to understand how others speak at times, it also means that she has the ability to write the most amazing creative stories.
O is still worried, as there are some things that she struggles with. But she also knows that she has many, many strengths and that we are doing our very best to help her gain the skills that she needs to navigate this crazy world.

I know that in time, O will blossom and do amazing things in this world.

Sunday 15 January 2017

Schedules, Consistency and Routine - the fun things in life!

I was asked about a week ago “how do you manage to get everything organized in the morning? How do you organize your time? I need some tips!”

Every family, every household, differs in some way in the same sense that every child diagnosed with Autism differs. No two are alike so the things that we do, may or may not work for your household. There are however certain aspects of Autism that are similar from individual to individual and some of the strategies that we use will benefit others.

There are some days when I am honestly not sure how we manage. These are the days when we are just winging it and hoping for the best. But there are strategies that we use subconsciously every day that help to make our days run smoother.
Most of the time, our days are structured to minimize the stress on our family but also to maximize our time to fit everything in. And there is a lot to do each week – not only is there our paid work commitments to consider but there are specialist appointments, therapy sessions, swimming lessons, day care and school and anything else that may crop up through the week.
I’m not saying that every day in superhero headquarters is regimented down to the last minute, but there is a little bit of structure throughout each day.
If there is one thing that we learnt very rapidly on this journey it was the importance of schedules, consistency and routine in the day to day happenings in our household. Both my little superheroes thrive on routine and consistency and they rapidly descend into meltdown mode if either of these is suddenly changed or is non-existent.
Both O and L need consistency and routine as they are what makes them feel safe. They may have had a rough day at school or day care but when they get home, they both know exactly how and why things are done. This helps to ground them. Routines and consistency brings back a sense of normality that they are familiar with. Chaos for anyone generally doesn’t have a calming effect, throw in Autism and chaos adds a whole new dimension of stress.
All I can suggest is that if you are after strategies, you might consider and modify some of our ideas so that they will work for you.

What do you mean by consistency?
Consistency could mean anything from the discipline methods used in your household to where you eat dinner every evening to how things are done around the house.  If things are not kept consistent, then your child may become confused. Their expectations of how things happen are suddenly changed and they may struggle to keep it all together.
L and O know that their school bags are kept in a corner in the dining room. L generally takes his green blanket to day care and school every day - god help us if anything ever happens to said green blanket as I wouldn’t have a clue where to get a replacement from – and once we have arrived home he will go looking for it when he needs to relax. If we constantly moved his school bag around, this would add to his stress. A simple act like having all the school bags in the same place, every day, reduces the stress. It also makes it easier in the mornings when we ask O and L to help get their school bags ready for the day.
Keeping all the shoes in the same place means that when L is asked to get his shoes, he knows where they are and can go and get them. It gives his self confidence a boost as he knows exactly where he needs to go.
It did take quite some time of me feeling like I was constantly banging my head against a wall, but eventually both my little superheroes understood where the school bags, lunch boxes, drink bottles, hats and other items went.
Most children can be taught how to organize, it may not be easy and might not happen at a fast pace, but if you persevere they will get there. If children can be taught good organizing habits, then it makes sense that calm should follow and that they’ll take these skills into adulthood.
I have heard of some families putting visual cues up around their house so that their children know where everything belongs. This could be a picture of a hat or a school bag or shoes. This will not only assist your child to learn where everything belongs but they are great therapy tools – remember, everything can be turned into a therapy game!!
The way that I look at it, if I can make a household chore into a therapy game, the sooner L will achieve his therapy goals. L loves to help with wiping the dishes. If I put the wet cup on the opposite side of the table to his free hand then he has to cross his midline to get the cup! If you put a picture of a hat where the hats belong, this will help with your child’s language skills.
If you struggle with consistency in your household, it is a good idea to sit down with all the adult members of the house and explain the benefits of consistency for your child. If you are all on the same page and the other adults understand the reasons behind the consistency, life is going to be much calmer for everyone.
Visual schedules
One of the things that L loves about going to Tara’s school, apart from seeing Tara, is his visual timetable. After he’s arrived at Tara’s school and has settled in, L will go to his visual schedule to find out what he is doing that afternoon. Daddy superhero thought that it was brilliant and set about to make our own visual schedule for home.
In the past we have tried printing off very simple visual schedules but they were never well received by L or O. So Daddy superhero got all the supplies that he needed, sat down with L and O, explained what he wanted to make and then started being creative. And wouldn’t you know it, both little superheroes wanted to help, they were their schedules after all. For their schedules we just used a piece of thick card, sticky backed Velcro dots and small wooden shapes.

Both O and L have a morning and an afternoon schedule that they can refer to at any point. Their schedules remind them of the steps that they have to do every day. The schedule reminds them of what they need to get ready for the day. I will always go along after to make sure they have remembered everything, but with the schedules, they can take some ownership and gain confidence in their own ability.
We have visual schedules of the items that L needs to have for rugby training and games. We have a visual schedule for L of the steps involved in putting on sunscreen. We used to have a visual schedule of the steps involved in going to the toilet. All of these are little reminders to L on how to do things so that he can learn for himself. They give him the confidence to be able to do things himself.

Visual schedules can be as simple or as complicated as you like, and there are plenty of free sites where you can obtain the visuals from to make your own schedules.

At the beginning of the last school year last, I typed up both O and L’s schedules for the week of what was happening each day at school, therapy or day care. This helped me to remember what was on each day and what each child needed to take with them each day. This was my reminder and it spent the whole year on the fridge for everyone to see.
It also meant that when I was booking in specialist, therapy, funding appointments that I could refer to my schedule to make sure that I wasn’t double booking ourselves.
Routines, routines, routines…..
If routines are kept the same, then they are the predictable calm part of your child’s day. O and L know that, generally, we are awake at the same time every week day morning – still trying to convince O that she really doesn’t need to be up at 6am on a weekend morning!
After they wake up, it is breakfast time, then they get dressed for the day and then they can play. Both little superheroes know that before they can go off and play, they need to do all their steps on their morning schedule.
L knows that Tuesday is my day off – not that it really is a day off – from work. Mummy’s day off to L means that it is shopping day and Tara’s School.
O has a set bed time routine that she developed herself – I know that if we deviate from that routine, bed time is a lot noisier and very drawn out. Even our drive to and from school is set, it is the quickest and easiest route to get there and hooley dooley look out if I go a different way, I can guarantee that there will be a little voice from the back seat saying “this the wrong way!”
I can’t encourage routines enough, it really is best to keep life as stable and routine as possible for a child or an adult with Autism. Even if it means that you need to write down a routine for yourself and put it on the fridge, set reminders and alarms on your phone, emails etc.
Saying that,there are going to be times when routines are going to have to be changed and children with Autism need to learn that life is not always going to happen in a certain way. Changing up routines every now and then is a good thing. You could make little subtle changes and then work your way up to large spontaneous changes. These will help your child to adapt to changes at school when they have no notice of a relief teacher for the day. Being comfortable with change will reduce the stress on them, internally they will know that even though they’ll feel anxious that they can get through it.
If I know that one of our routines is going to change, I do forewarn my little superheroes so that they are prepared. We learnt to do this the hard way! I also talk to both little superheroes on a regular basis about what we need to do or what is going to happen that day.
Let’s face it, an integral part of being a special needs parent is the what seems to be the never ending specialist appointments. It honestly feels like we spend more time sitting in specialist offices than we do enjoying the company of our friends.
I’m very lucky in that I only work four days a week. As I mentioned earlier, Tuesday is my day off. This means that Tuesday is generally appointment day. I try to organize any appointments that we need to go to for a Tuesday morning. I do all my phone calls to funding bodies, case managers etc on a Tuesday afternoon when L is at therapy and before I pick up O from school.

Setting aide time to make phone calls means that I am not rushing around like a head less chook. I know that this time is generally free from distractions (namely O and L) and I can get everything organised.
If I’m unable to make appointments for a Tuesday, then I will always try to make the little superheroes appointments either early in the morning before school or after school. Morning appointments mean that the little superheroes are fresh from sleep and as such the appointments generally go well. Both O and L like going to school and really don’t like being pulled out of school early. O panics about school work that she might be missing so after school appointments reduce the stress on her.
When I’m making appointments I also try, where possible, to book follow up appointments, if they are needed, months in advance. At one point, I had four months worth of psychologist appointments booked for O. One of the great things about all our specialists is that they phone a week out from the appointment to remind us. I also write all our appointments on our calendar and put them in my phone. Can never have too many reminders!
Depending on which specialist we are going to, I try to prepare the little superheroes beforehand. I’ll talk to them about why we have to go and where we are going. L identifies specialist offices by their play areas and water dispensers – so I’ll remind him which one he’ll be going to.
When we go to appointments, we always take our bag of tricks – it has toys, games, books, colouring in books, paper, pencils, food, drink bottles and wipes in it as well as some sensory toys. We must look like were going for a week-long trip. All of these items assist my little superheroes to feel comfortable, they all assist to keep them calm. The office may be busy, but my little superheroes can retreat to their belongings that they know.
This is a big one is our house and it is usually the one that takes up the most time each day. At the start of the week I will ask O and L what they want for lunches each day at school. We are quite lucky in that both little superheroes have their standard fair that they eat at school each day. Wednesday is always tuck shop day at school for O, so that brings it down to four lunches.
Prior to doing the shopping I am one of these crazy people who do up a weekly menu. The menu has certainly saved us not only money but also time. Between the menu and knowing what the little superheroes want for lunch, I know exactly what I need to buy. If Daddy superhero is on dinner duty, he has a list of preplanned ideas to cook. This has definitely been a saving grace for us. It saves a lot of time when you know what is in the fridge or freezer.
One of the best and most used kitchen appliances that I have ever brought has been our slow cooker, in fact we have two of them. You can cook almost anything in a slow cooker – roasts, soups, curries, pasta, you name it there is probably a slow cooker recipe for it. It is great, I can put the slow cooker on in the morning and then when I get home, dinner is done. If we’re at appointments all day, the slow cooker means I don’t have to worry about dinner. If we’ve had a rough day with the little superheroes being in sensory overload, having dinner looked after is a huge relief.
I honestly use our slow cooker more often than I use the stove and oven!

Depending on what is on the menu, I always cook more than we need. The leftovers go into the deep freezer for those nights when we are just too tired to cook.
Always Be Prepared. Channel your inner Scout!
During the school week if I’m able to, I will get the little superheroes clothes for the next day ready the night before. The clothes are laid out where O and L can see them. This eliminates them having to decide what they want to wear the next day. With L, he likes to be in control, so I will always have a few choices for him to chose from. This makes him feel like he is in control but I get the outcome that I am after – L getting dressed. It also means that he can visibly see what he has to put on and he will rarely get “lost” while getting dressed.
It sounds rather silly but I also get my clothes for the next day ready the night before. It just makes the mornings run so much smoother. It is one less thing to organize.
If I’m starting early at work I will get school lunches ready so that in the morning I can just pack lunch boxes.
All of these strategies give us a few extra minutes in the morning to play with.
Make some friends.
Being on this Autism journey has made me feel much more comfortable talking to strangers. When you’re sitting in a waiting room watching your child wreck havoc, I mean play, talk to those around you. We have a group of friends that we met through our therapy appointments. Being on this Autism journey can be lonely at times and finding people who understand exactly what you are going through is important for your own sanity.
Reach out to other people who are on a similar journey, exchange stories, compare notes, have a circle of friends that when you are in a dark place, will understand and be a listening ear.
There are some great Facebook groups which are filled with supportive members. One group that I am part of is Autism Living Life onThe Spectrum. I can sound ideas off other members, ask for advice, have virtual coffee chats, share lows and most importantly share wins.
Tag, you’re it!
In superhero headquarters it really is a tag-team effort between myself and Daddy superhero. With L’s sleeping patterns, or lack thereof, we will take it turns to stay awake with L. Or we will tag out during the night if we need to sleep. Cooking is a tag-team effort. If one person did it all, they wouldn’t have any energy left. I really don’t know how single parents survive.
If you don’t have any support at home, perhaps you could rope in a trusted friend to help occasionally. It doesn't have to be every night, maybe once a week to help out, just to give you a night off. It could even be asking a friend to cook a meal for you once a week. I don’t like asking for help but I have swallowed my pride in the past and asked. I injured my neck and back a few years ago when Daddy superhero was away for work. Wanting to stretch my back, I laid on the tiled floor and then could not for the life of me get back up. O retrieved my phone and I phoned a friend, thanks Bec, who not only brought Maccas for dinner but also bathed the little superheroes, got them dressed and got them to bed.
If you need to ask for help it does not mean that you are weak, it means that you are strong as you have recognized that you can’t do it all.
So tag, you’re it!
Our Autism Bible
The next piece of advice that I am going to give, and this is one that if you don’t already have this system in place, it should be the only piece of advice that you take from this post.

At the beginning of our Autism journey, we were given we what we call our Autism Bible through the Autism Association. This is a three ring binder that is sectioned off with various headings. In this binder is everything and anything to do with L and his Autism diagnosis. The binder has L’s diagnosis notes, letters from specialists, his NDIS funding information, L’s medical information, copies of his IEP, basically anything that we might need to refer to when speaking to medical and therapy professionals. In the back of the folder are pages and pages of therapy information and other sheets to give to teachers and relatives. There is space to work out therapy expenses, card holders for all those business cards that you may acquire.
When we have appointments, this bible goes with us. I no longer have folders everywhere, I have one folder. All the information is kept in one easy place to find.
It makes perfect sense to keep all information in one place but it is not something that we thought of when going through the medical round-a-bout leading up to L’s diagnosis.
I’ve since added information that we received from his therapists at the early intervention centre and hospital records from when L had emergency dental surgery last year (that’s another story!) L’s immunization records are in the file.
It is definitely something that all families should have.
Lastly, have some me time!
At the end of each day, make sure that YOU sit down and relax even if it is only 5 or 10 minutes. Catch your breath, make a coffee if you need it, read a chapter in a book, watch some television. It is vital that you take the time to have some time for you.

What’s really important, a clean spotless house or keeping your sanity?

I’d love to have a spotless clean house but then I wouldn’t have time for me. Time for me to reclaim my identity. Time for me to do something that I like doing. Time for me to recharge.
I find that when I do get the chance to sit down and do nothing, I am a lot calmer afterwards. Calm is good remember!! Calm is what we all need to aim for. When we are calm, our children are calmer!
Self-care is super important and it doesn’t have to be completed. A day at the spa would be great, but realistically I know that isn’t going to happen every week. Self-care could be as simple as having a cup of coffee, reading a book, going for a walk with the family, spending some time out in the garden, watching a show on TV, something that helps you to relax.

You need to look after yourself before you can look after your family. If you are run down, you are not going to be of any use to your family.

So sit down, have a cuppa and breathe!