Anxiety. How can it manifest?

Anxiety.

It's one of those tricky issues that is quite common in society and yet it seems to be some what of a taboo subject to talk about.

And it is all due to the fact that anxiety is a hidden illness.

Some people in society seem to believe that if they can't see the illness then it doesn't exist. This makes it extremely difficult for adults to talk openly about their anxious feelings. Now imagine how difficult it is for children to talk about their anxious feelings, when unfortunately, some people simply don't believe that children are capable of suffering from anxiety.

Children suffer from anxiety? How can they? Children have nothing to worry about. Children, at times, have a lot that they worry about. 

Friendship woes. Pressure at school to perform academically to a high standard, thanks NAPLAN. They may have issues at home that are affecting them. Peer pressure seems to happening at a younger age. Being bullied by their peers. They may take on the worries that their friends have.

Some children may express to their parents, teachers or peers that they are worried, others may not. O is one of those who will not tell a soul that she is worried or anxious. Partly because she is still learning how to recognise the internal feelings of her anxiety. And partly because she doesn't want to burden others with her worries.

The number of times that we, as parents, have been told that O can't possibly suffer from anxiety issues is staggering. And this is because she doesn't present as having anxiety.

You see, in children, anxiety can present in a number of different ways.

O's anxiety is sneaky, it doesn't often look like worry. O's anxiety manifests itself in a variety of different ways, and it can differ from day to day.

So what should you be on the look out for? Read on!

O's anxiety sounds like physical complaints …. "My head is sore," "My tummy hurts," "My heart is beating too fast," "My throat hurts when I swallow," "My muscles in my legs hurt." This makes it difficult at school when she presents at the sick bay and appears to need to go home due to illness. We now have a flow chart for O to work through prior to attending the school office and again if she does end up in the sick bay. Nine times out of ten, it is her anxiety causing the physical complaints. The hope in using the flow chart is that the school staff can attempt to assist O with whatever is causing her anxious feelings to determine if she is anxious or in fact ill.

O's anxiety can manifest as anger, verbal outbursts, irritability, defiance and frequent meltdowns. And it is well and truly after she has vented that we are able to get to the bottom of what is causing the anxiousness.

O's anxiety manifest itself as procrastinating in doing the things that she ordinarily loves to do like choir and cubs and sporting activities. O loves school to the point that when she is sick, she still wants to go. The mornings that she is overly reluctant to go to school, we know that her anxiety is at play. O has always been a social butterfly, she struggles in social situations but she loves meeting new people so when she decides that she just wants to sit in her room and NOT be social, we know that's her anxiety speaking.

O's anxiety can manifest itself as becoming clingy, worrying about where other family members are and when they'll be home (even though she knows where they are and when they'll be home.) Her anxiety can manifest itself as O asking the same question over and over and over again

O's anxiety can present as BIG emotional feelings that are too overwhelming to describe or to manage. Cue meltdown central.

O's anxiety can manifest as feeling physically, emotionally and mentally exhausted all of the time. Her anxiety can also present as fatigue …. "I'm too tired to play, too tired to run, I just want to sit."

O's anxiety can present as an overwhelming desire to control those around her, including her friends, and events that she is involved in. If O can control what is happening around her, she knows exactly what is going to happen and the unknown becomes the known.

O's anxiety can manifest as an inability to pay attention to what is happening around her.

O's anxiety can manifest as having a super high expectation for herself at school.

O's anxiety can also present as worry. O will worry about the big and the seemingly small things in life. But to her, the small things are often the biggest.

O's anxiety manifests itself as her twisting her hair, chewing on her shirt collar, chewing or sucking on the lid of her drink bottle. 

O will internalise all of her anxious thoughts and feelings all day and then explode in the afternoon the minute she walks through the front door.

On any given day, you may see all of the above in O. Other days, she may only present with one or two of the above.

The ways that O's anxiety manifests itself is quite common in many children as well as for many adults.

The next time that someone says to you that they are anxious and you just can't see it. Please take a closer look. Look at their body actions. Are they desperately trying to tell you something.  

I may be a tired mama but my children are worth it!

Before I go on, I want to take my hat off to all parents who may be reading this. Being a parent is, for me anyway, the most rewarding role that I have ever been in. But on the other hand it is also the most tiring.

I've written a post in the past about the lack of sleep that we experience on a daily basis and I've come to the realisation that sleep is a rare commodity in superhero headquarters.

I'm now at the point that on some days I am beyond tired. I am exhausted. The level of exhaustion where no amount of sleep, rest or coffee helps.

At times it feels as though I have no energy left at all and I am hoping that at some point in time all parents have reached this point of feeling totally and utterly exhausted.

And if you are a parent who has never reached this level of exhaustion, pray do tell me your secret.

What I have learnt on our journey thus far is that this level of complete and utter exhaustion is quite often reached much quicker in parents of children with special needs.

As parents we give and give and give to ensure that our children are fed, are healthy, clothed and educated.

As a parent of a special needs child, when you throw in the need to research therapy types, new ways to help your child, endless specialist visits and then we try our hardest to be the best advocate for our children, this all adds to the exhaustion level. The lack of sleep is just the tip of the ice berg.

And when you reach this level of exhaustion, you're absolutely no use to anyone at all.

The cliché "you can't pour from an empty cup" couldn't be more true.

We do so much for our children but it is also important to take time for ourselves. We need to take care of ourselves to be able to take care of our families.

When we first began our autism journey I will admit that I felt very much alone. And then I met parent after parent who felt exactly the same as myself and I realised that we weren't alone.

On this journey you are definitely not alone. You just need to find your tribe.

I have found my tribe - parents who have been there, parents who are currently there and those who understand.

When you find your tribe, you will gain support. You can support each other on the tough days and you can celebrate the successes together.

I'm incredibly fortunate in that my husband recognises when I am about to reach breaking point and visa versa.

"Go and get a coffee."

"Take a warm bath."

"Go and get some sleep."

Statements such as these can be heard on a regular basis in superhero headquarters.

Reach out to your partner, reach out to trusted friends, reach out to family so that you too can have someone who has your back. Someone who will recognise the signs of exhaustion and remind you to take time out.

Life is exhausting and it's okay to reach this level of exhaustion.

Reaching this level of exhaustion doesn't mean that you're a terrible parent. It doesn't mean that you don't love your children.

Reaching this level means that you are doing an amazing job as a parent.

So how do we take time out when life seems to be too hectic to stop for even a moment?

There are many things that you can do when you need time out.

Read a book ........

Take a relaxing bath ........

Take a walk outside ........

Go and grab a coffee. A hot coffee. Alone ........

Do something that reminds you of who you are ........

Do something that brings you peace and joy. Something just for you ........

Our autism journey is beautiful. It is tiring but first and foremost it is beautiful. I love watching my little superheroes grow as individuals and learn new skills.

All parents are raising unique, smart, wonderful children and you need to hold your head high and keep moving forward, as you are doing an amazing job at raising your children.

I may be a tired mama but my children are worth it!

Why is the Autism Spectrum Disorder diagnosis process so draining?

I am often asked about the ASD diagnosis process particularly by families who are about to embark on the process and also by those who are genuinely curious as to how Autism (ASD) is diagnosed. The two points that I initially always tell them is that the process is very long and it can be very draining. Hopefully by the end of this post, you will understand why.

The entire process from start to finish, at times, can take several months. L's diagnosis was over and done with in about 5 months. O's diagnosis has taken 7 months and we are still waiting on the reports.

As you read the following post please keep in mind that this is generally what happens in Western Australia. The diagnosis process does differ from state to state and from country to country. What stays the same is the criteria that must be used during an ASD diagnosis - the DSM-5.

To start the ASD diagnosis process for a child under the age of 12 in Western Australia, one must first go to your regular GP and obtain a referral to a paediatrician. This in itself can pose an issue as not all GP’s are familiar with ASD and how the traits can be presented. Some people have found a lot of resistance from GP's to complete a referral, it is generally not the first line of management from their point of view. Many GP's will suggest that the child be seen by a psychologist or that the parents attend various parenting courses that are often available in the community. Other GP's may suggest medication for children presenting with anxiety.

The first piece of advice that I can offer, is to be an advocate for your child from the get go. The sooner that you obtain a diagnosis, the sooner your child can participate in much needed therapy.

One you have the referral in your hot little hand and you've contacted your paediatrician of choice, you will often be placed on a wait list. This could be for weeks or months even. Pediatricians in Western Australia are in hot demand and quite a few are being very selective or not taking on new patients unless there are serious concerns about the child. We were incredibly fortunate with L in that he was already a patient of our paediatrician. When I rang to make the appointment for O, the receptionist advised me to jot down all of the concerns that we had about O and attach it to the referral. This was so that the paediatrician could make a decision on whether he would see O based on all of this information and to ascertain if enough of the criteria are met to warrant being referred onto a speech therapist and psychologist. Luckily (or unluckily depending on how you look at it) both O and L met the criteria in the DSM-5 for the paediatrician to make a provisional diagnosis.

My next piece of advice is if you are wanting to go through private health system for an ASD diagnosis, provide your paediatrician with as much written evidence as possible to put with the GP referral as  this will quite often assist the paediatrician to determine whether or not to take on your child.

In Western Australia, a child under the age of 12 years must receive three separate diagnosis – paediatrician, speech and psychologist – and all three must be agree with each other. If one of the specialists disagrees, an ASD diagnosis will not be made.

With L our paediatrician referred him to Intervention Services Autism and Developmental Delay or ISADD. ISADD is basically a one stop shop and have access to speech therapists and psychologists, however they are very expensive. As well as assessments, ISADD can also provide therapy, advice and support.

With O our paediatrician referred her to the Child Development Centre in our local area to see a speech therapist. O was already under the care of a child psychologist so that covered one specialist.

From gaining the referral to the initial appointments, the time period was around 6 months but that was obviously through the private system.

When O was in Kindy she was referred through the public system for her speech issues which at the time were unrelated to ASD. Her Kindy teacher completed the referral and it was processed through one of the local Child Development Centre.

This referral and subsequent appointments were free as it was through the public system, however the wait lists in the public health system are ridiculous. A friend of mine is currently in the ASD process through the public system and it has been over a year since the referral was done. They are still waiting for a paediatrician appointment. A referral done through the school system is processed through the closest Child Development Centre to the child's school. Once the referral has been processed the child is then put into the system to whichever centre has a place available.

I have been told that the wait list can depend on how much information is in the referral – the more information that is in the referral means potentially a shorter wait list time. O’s referral was put processed in term 1 of Kindy, we received the letter of confirmation term 3 of Kindy and we received her first appointment in Term 1 of Pre-Primary. That was purely for a speech issue and it took just over 12 months.

One of the positives about doing it this way is that once the child is in the public system, they will not be discharged from the service until the issue has been diagnosed or the child has made significant progress. O was in the public system with her speech for a good 18 months after her first appointment.

If you do decide to go ahead with the diagnosis process, the third piece of advice that I have is try to NOT prepare your child for the appointments whether they go private or public.

This sounds dreadful but it is honestly best for the specialists to see your child as they would appear day to day with their typical behaviours, their stims, meltdowns, anxiety and so on. I know of several families who prepared their children beforehand so that child knew what to expect. In doing this, by the time they got to the appointment the children were so familiar with the environment that they made eye contact, they stopped stimming because they weren't as anxious about the specialist visits and they were subsequently talking to the therapists. So while the children met most of the ASD diagnosis criteria, the specialists decided that because the children made eye contact and were sociable they could not have ASD.

It is incredibly distressing, but the more your child is acting naturally, the more challenging behaviour the specialists are able to view and document.

The final piece of advice that I have is prior to the assessment process we wrote down every little piece of information that we could remember dating back to birth. All the odd behaviours, all the missed milestones, sleep issues, obsessions, the sensory sensitivities, the repetitive behaviours and so on so that when it came time to answering questions, nothing would be missed. This was incredibly useful as we were able to keep focused on the questions rather than dwell on the apparent negativity.

The questions that are asked during the assessment process can be quite personal, they cause you to take a closer look at your child, they can point out  and focus on the negative behaviours that your child exhibits and at times they can cause you to question your own behaviours. Having all the information in front of you to refer to means that there is a lower chance of you missing any vital information.

The ASD diagnosis process is very lengthy and extremely draining, both emotionally and mentally for the child but also for the child's family. While you are on the diagnosis journey it is important to keep the end goal in sight and in the back of your mind. Keep reminding yourself that you embarked on the process to ultimately gain assistance for your child. This is what has kept us going for both O and L. While the process is draining, the end goal is rewarding.

I'm really not antisocial...........

Just lately I have felt very anti-social, but I'm really not. I do enjoy the company of others but there are times where I would just prefer to be at home with my family and here is why.....

I start my day, every day, at 6am or earlier depending on how much sleep L has decided that he needed the night before and how early O decides that she needs to wake up.

Most mornings there is an argument over my phone and it is easier just to give in as no one wants a meltdown at 6.01am or earlier!

I've learnt to pick my battles, there are some that really aren't worth fighting over.

Some mornings run smoothly, some don't. If the wrong person gets L out of bed, or his breakfast sandwich is cut the wrong way, if his shorts are uncomfortable or have pockets, or the wrong show is on TV, then all hell can break loose.

Time for coffee #1.

Lunches, we're very lucky in that both my little superheroes at very predictable in what they will eat at school. Their lunch box content rarely varies so this is the quick part of the morning!

Depending on the day, depends what needs to be prepared.

Breakfast on the other hand, this can go on and on and on....... If able to, I am sure that L would just keep eating. Most mornings we have to put a stop to L's eating otherwise we would never leave the house on time!

Time for coffee #2!

If it is a Tuesday, my day off of paid work, then I spend the morning doing a school run, making phone calls to specialists, playing phone tag with our two support coordinators, trying to get in contact with our funding manager and attending to emails. Then it is back to school by lunch time to collect L to take him to the early intervention centre before returning the school to collect O and then back to pick up L.

By then I have lost count of how many coffees I have had.

Then you can add in doing the weekly shopping, paying bills, chasing up medication scripts, trying to figure out the NDIS portal, don't get me started on that abomination, and any of the little superheroes extra curricular activities!

Any other week day I head off to work after either dropping the little superheroes at school or at before school care. I do enjoy heading off to work as I get to leave my stress at the door and can concentrate on doing my job. Work for me is a welcome distraction from our autism journey.

Saturday is swimming lesson time. Sunday is spent trying to catch up on the previous week and getting everything ready for the following week.

If I say no to a play date at an unfenced park it is because I know that L will try to escape and I will spend the entire time following him around the park. Home or a fenced park is a much better option.

I rarely have a day off where nothing is planned so when I do get a "day off" I honestly don't feel like being social.

My last Tuesday day off, I spent a total of 40 minutes at home between leaving for the school drop off at 8am and arriving home at 4.30pm after collecting both little superheroes. Tuesday really isn't a day off for me and when I am asked "how was your day off," at times I really want to turn around and say well actually.....

The rare moments that I do get to myself, I either want to sit and do nothing or sleep to catch up some much needed zzzzz's.

Or I want to spend precious time with my little superheroes, just playing or reading with them or watching them play and be creative.

So I'm really not antisocial, I'm just tired.

Why being an advocate is hard but also rewarding.

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

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

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

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

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

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

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

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

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

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

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

BUT

Being an advocate is also a very rewarding experience.

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

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

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

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

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

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

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

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

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

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

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

Life is like a Rollercoaster with Scary Clowns Lurking in the background

Several weeks ago we had a very, very interesting week. And when I say interesting I mean challenging, overwhelming, frustrating, exhausting and heartwarming. And it’s taken me until now to work up the courage to write this.

Daddy superhero was away for work and the little superheroes really struggled to understand where and why he went.

They both know that sometimes Daddy has to go on an aeroplane for work but they haven’t quite grasped the concept that it doesn’t mean that he’s gone on holidays. O has started calling his work trips "workadays." O knows that Daddy is doing work but she also thinks that Daddy is doing some sight seeing.

In L’s mind, the last time that we all went to the airport, we went on a fun holiday. So L was adamant that Daddy had gone on a holiday too, without us. It was quite logical to a 4 year old and you can imagine the response that the thought of Daddy going on a holiday without us brought on.

L also decided that for that week sleep was optional, every night.

By Friday morning I was completely overwhelmed by the little superheroes, by the lack of sleep and by the subsequent stress that the week brought on me. This feeling of being completely overwhelmed brought on a panic attack, the first one that I have had in a very, very long time and I ended up at my GP where one of nurses made me have a sleep. Thank you Sue xx

The week ended well, I caught up on sleep, L and O caught up with their friends at a birthday party and a lovely friend came over to help with the little superheroes. I can’t say thank you to Alisha enough.

But that week got me thinking that our Autism journey really can be likened to a ride on a rollercoaster at a funfair.

Life in general can be likened to a rollercoaster. Life can be beautiful, crazy, emotional, exciting, frustrating, difficult and amazing all at the same time.

There are many moments of immense joy, excitement, thrills and laughter. There are the photo moments that I want to etch into my brain so that they’ll last forever. Then there is the fear and anxiety and self-doubt that I am doing enough for my little superheroes, could I be doing more, should I be doing more?

We have days where I am the mum who is waving proudly from the sidelines as my little superheroes tackle life on their own. These are the days when I am cheering them on as they learn new skills, watching them make huge gains and wanting to give them constant high fives to celebrate their successes!

We have days where I feel as though all I am doing is driving a bumper car, forever knocking obstructions out of the way so that there is a clear path going forward for my little superheroes.

Then there are the days, weeks even, where I feel that I am hurtling downwards on a white knuckle, out of control, jaw dropping roller coaster and I feel as though I have no control what so ever over the ride that we’re on. It feels as though we have no way of getting off and I end up wondering whether and how we are going to survive.

And then there are the scary clowns. Seriously, L has a phobia of clowns, even pictures of clowns. Clowns cause L to run, very fast, in the opposite direction from them. Those days I don't know how we survive. Days like these I just put one foot in front of the other and keep pushing forward.

We all go through these ups and downs. Sometimes there are more ups then downs, other times the ratios are reversed. Throughout this ride called life we have two choices - we can scream and try to hide or we can try to enjoy the ride.

I chose the latter. I have no choice but to ride this rollercoaster so I muster the strength that I need to navigate through the Autism minefield and simply get on with life. If I didn't try to enjoy the ride, I would end up in a very dark place. All of the time. Not a pleasant thought.

Why do I chose to enjoy the ride? Because I love my children. They are my world and I will never give up, no matter how insecure and alone I may feel at times.

Autism doesn’t go away, and believe me I have been asked this question many times! Autism does get easier to manage.

You can never predict what is going to happen in the future, it's the great mystery of life. So the next time that you feel as though life is throwing you a curve ball and is getting you down, just remember that life changes. Nothing stays the same forever.

And in the meantime, hold on tight and keep going.

When does it stop?

I've been asked on quite a number of occasions by parents who have newly diagnosed children as well as individuals who have very little to do with the Autism world "when does it stop? When do all the endless specialist and therapy appointments cease to exist?"

I would love to say that I have the answer. But the truthful and honest answer is that I don't know. I truly do not have an answer, or a solution in fact, to this question.

What I can tell you is this..........

Since we received L's diagnosis in January last year, the specialist appointments for L have become few and far between. With L we are at the stage of follow up appointments and these are usually six to twelve months apart.

L's therapy has been consolidated into one place. We're no longer having to visit two or three different specialists. All the therapy that he requires is provided during one time slot, on one day a week.

At the beginning of this year we were lucky enough to be provided with a lovely support coordinator through the Autism Association who liaises with all of L's service providers. Our support coordinator does all the leg work for us and comes to us with solutions. It is wonderful. Mind you there is a fee involved but her work behind the scenes is well worth the monetary value.

The Autism Association are, in our eyes anyway, experts in the Autism field and as such we are drawing on their expertise and knowledge to find the best service providers to assist us with helping L, and eventually O.

I can't stress enough the importance of early intervention and keep in mind that early intervention services can come in many different forms. The way that we see it is if we are able to provide L with the therapy now in his early years of life, as he grows older he is already going to be equipped with the skills that he requires to navigate through life.

L's therapy is fairly extensive at present but I would imagine that in the years to come as he better learns how to manage his autism, the therapy may slow down. I simply can not see the therapy ever stopping but I can see that he may not need as much.

The same can be said for O. If we are able to assist her now to gain the skills and knowledge that she so desperately needs to manage her anxiety and social awkwardness, then later in life she is going to be much better equipped. O may still need some therapy, but again fingers crossed not so frequently.

Now in saying all of this, the level and intensity of therapy required really depends on the diagnosis level. I simply can not imagine how much more difficult life would be with a child who is non-verbal. I would imagine that the therapy involved would increase ten fold.

Autism never goes away. It isn't something that can be cured with a  magic pill.

What I have realised is that we are learning to manage life with autism. Life doesn't stop because of an autism diagnosis, we had to adjust. We have had to put other items on our family agenda on hold for an indefinite time period but life hasn't stopped completely.

We may have to constantly make adjustments on this Autism journey and we do this because my little superheroes are worth it.

Anxiety and the delayed effect

Disclaimer: I'm not an expert on anxiety disorders, I'm just commenting on what we see on a very very regular basis. If you feel that you have issues with anxiety, the best advice that I can give you is to go and see your GP.

This afternoon O walked through the door at home and immediately I knew that something was up. O didn't have to say or do anything, I just knew. Call it mothers intuition, call it picking up on cues, call it what you like, I just knew that something was wrong. I knew that her anxiety had been eating at her all day and that I was about to see the delayed effect.

I knew that O had had a tricky day at school and that she had managed to hold it together for the entire day - at before school care, at school and in the car on the way home. I knew that she didn't draw attention to herself all day and that very shortly, cyclone O was about to hit.

O may have been showing small signs throughout the day, signs that someone who knows O well or someone who has experience in childhood anxiety may have spotted early in the day. O may have been stimming, she may have been chewing on her shirt or she may have been fidgeting. These are all little signs that her anxiety is beginning to take over, beginning to consume her every thought. O's small cues may have been missed or they may have been mistaken for tiredness.

I'm not sure that O is able to recognise that her anxiety is rising until it's too late and then because O hasn't learnt the skills she needs to lower her anxiety, she starts going round in circles which in turn increases her anxiety. It's a vicious circle and it is one that she struggles to get herself out of without assistance.

As we walk through the door, all the remaining energy seeps out of O and I can see her deflating like a balloon. O's face tenses up, she has red cheeks, her body is stiff, her speech is reduced to very short simple sentences and she constantly has her shirt in her mouth. O needs a snack to eat but we don't have the right ones in the cupboard. Our lorikeet squawks hello too loudly, L runs past too quickly.

I try to engage O in conversation to distract her, to get her mind out of the anxiety trap, but she isn't able to answer as there is a fog that surrounds her and she isn't able to process what I'm saying.

O starts to get angry and she's no longer in control of her body, she starts to lash out at L. L then lashes back and round two has begun.

O is in full meltdown mode, there is no turning back. All her pent up frustration has to come out. O kicks and screams and lashes out at anyone that comes close. We just have to let her ride it out.

This, my friend, is the delayed effect.

Some medical professionals have called it "the delayed effect." Others have called it the "pressure cooker" situation. Others call it the "bottle of pop phenomenon."

The delayed effect is a very common challenge that many children and adults with ASD face on a daily basis. I would say that individuals who suffer from  anxiety may also experience the delayed effect. And the tricky bit is that quite often people outside the family unit don't ever see this other side. Parents will describe the child one way, schools see a completely different side. It's almost like a Dr Jekyll and Mr Hyde type situation.

Some children are able to hide the signs of anxiety very well. They can often contain their feelings and their teachers remain blissfully unaware of the rising stress inside their students. The child's teacher will often not believe, or at least struggle to believe, the parents or may not understand, as they may never see this other side of the child.

When we've tried to explain this other side of O, we've been told -
"But she's always so happy, she can't have anxiety."
"She smiles alot, she has a lot of friends, she doesn't have anything to be worried about."
"But she's so polite and friendly in class, she never yells."
I'm sure that at times, her teachers think that we are fabricating how O behaves at home. It wasn't until I recorded one of her meltdowns, that people started believing what we described and took us seriously.

The rising anxiety throughout the day might be due to any number of things. A new topic might have been introduced in class. Class reading groups may have been changed. The classroom may have been rearranged. There might have been a relief teacher for dance. O may have struggled to understand a task that her teacher had set. The noise levels in class may have gotten too high.

I liken anxiety to that of a duck paddling on a lake. Above the surface of the water, the duck appears so graceful, gliding along the surface. Below the water, the duck is paddling away furiously just to stay afloat. It's exhausting for the duck and after a while, the duck needs to take a break.

O's break is at home. O is somewhere safe, she is somewhere familiar and simply can't contain the pressure anymore. O feels safe and secure with us, we understand her, we won't judge her and won't hate her for whatever she may do or say. We're the predictable part of her day, we're her calm.

After the meltdown, exhaustion sets in. The exhaustion doesn't just hit O, it hits L, her Dad and myself. It's hard being a mum on the receiving end of the delayed effect as it holds no prisoners and it really doesn't care who it hurts in the process. I can't even imagine how it feels for O. She is beginning to express how it feels, but she doesn't fully understand the how or the why it happens.

O is gradually learning the skills she needs so that she can recognise her rising anxiety levels and so that she can get herself out of the vicious circle. We use a combination of story books, breathing techniques, essential oils and sensory toys to help O to relax and calm down. Sometimes they work, sometimes they don't. We also take O to see a child psychologist so that she can learn strategies to help her when she starts to feel anxious.

The delayed effect, it's real. Trust me. Individuals suffering from anxiety need support, not disbelief. So the next time, you hear someone say that they or their child suffers from anxiety, please don't brush them off. Offer support. Be that friendly ear that they may need. Be their predictable.

Time to look after me

After being on holidays for three weeks and being able to relax and do absolutely nothing, getting back into the normal day to day routine was a bit of a struggle. So I decided that each weekend I am going to try and have some me time, even if it was just 5 minutes to recharge my batteries.

The wonderful lady who runs a Facebook group, Autism Living Life on the Spectrum, that I am part of posted a #selfcare Sunday to-do-list, so I am going to borrow her list and expand on it.

So, here is my #selfcare to-do-list!

Have a cuppa - try for a milo but will probably be a coffee.
Enjoy breakfast - while my toast is still hot or at least warm. And if it goes cold, I'm going to make more!
Nurture Me - warm shower, relaxing bath, without the little superheroes in with me!
Relax - sit down in a comfy chair and not do a thing for a change.
Read a book - I'm determined to cut down on how much time that I spend playing on my phone. Going to read a book instead, either a book for me or read a book to my little superheroes.
Go to Bed Early - by early I mean soon after my little superheroes go to sleep. This could be anytime after 8pm mind you!

Enjoy being outside - my little superheroes love having us watch them play, so I'm going to make sure that I spend time doing this. Not outside hanging washing or tidying up, just outside watching them play!
Going for a walk - each day on our holiday we went for a family walk. It was great, we loved it and the little superheroes loved it. We're going to keep doing this, perhaps not each day as some mornings are just crazy!
Do some baking - with the little superheroes. Biscuits, muffins, who knows, just some different snacks for us all.

What have you done to nurture yourself today? It may not be one of these, but something is better than nothing!

We spend so much time making sure that our little ones are okay, so now it is time to nuture yourself, you need to honour yourself for the amazing job that you do .... because you are doing an amazing job!

If you are after a fantastic support group, I would really recommend Autism Living Life on the Spectrum. It is a forum full of very supportive individuals, loads of great information and a place where everyone is accepted for who they are.

Sometimes I just need to escape.....

Don't get me wrong, I absolutely adore my little superheroes and would do anything for them, but there are times when I need to escape and do something for me.

As the saying goes "you have to look after yourself before you can look after others" and it is so true.

Last week I was flat out with work, looking after my little superheroes and my husband, and getting everything ready for our holiday that I neglected myself. You know the feeling - your head is stuffy, you have a lingering headache that just won't go away, you feel like you have no energy, you just want to crawl into a warm bed, curl up and go to sleep preferably without the little superheroes in the bed too. Yep, well was me last week but you have to get on with daily life.

I said to my little charges at work that I was going to miss them while I was on leave. Nah, who am I kidding, I'm going to relax and try not to think of them so that I can go back refreshed and ready for next term!

I discovered very quickly into our Autism journey that I needed to find something to do to relax. Be it reading, spending time outdoors, take up a hobby, do some running - I don't run unless I have to so that is out - just something that I could to do to take my mind off of what was happening in our busy household. Something that meant that I could just chill out and relax. Something that I could do late at night when L was in a I-don't-need-to-sleep mood that wouldn't disturb the rest of the family. Something that we could do as a family that didn't cost a lot and was fun.

I love reading, I set myself the task of completing a reading challenge earlier this year. I'm kind of on the way to completing it and I have read quite a few books so far. I've discovered old gems that I'd forgotten about or put off reading and I've also discovered new books that I wouldn't have thought of reading. It has also been great for my little superheroes to see Mum reading a real book, rather than reading an e-version on the iPad or the phone. Nothing beats having a real book to read and it is great role modeling for the little superheroes!

I've also read a heap of publications on Autism, Anxiety, Aspergers, Sensory Processing Disorder and anything that relates to those topics. I figured that the more I read about them, the better informed I would be when going into speak to all the therapists and specialists that we see. If I can keep up to date, then perhaps I can pass the knowledge onto L and O's teachers. I wanted to know what goes through L and O's brains on a daily basis, why they might react to certain things in certain ways. Reading these publications has opened my eyes and made me realise that at times I needed to change the way that I was speaking with O and L.

Gardening - O and L love being outside, playing with our menagerie of animals, digging in the dirt, running around like crazy kids! This year we decided that we'd create a vegie patch in the backyard. It got off to a great start, O and L helped to chose what to plant, it was quite relaxing to go in and create the patch and tend it as well. O's fairy friends came and created a fairy garden for her and a dinosaur garden for L, so they'd be in the patch for hours playing with the bits and pieces that the fairies left behind. And then our rabbit found a way in and the kids "helped" with some weeding. So unfortunately the vegie patch has been a little neglected. It's on the to do list for term 4!

The other way that I relax is to be creative - sewing, cross stitch, crochet, drawing, give me a project and I'll give it a go.

In January this year, I made a list of things to do this year:

• Teach myself to crochet - I can tick this off my list. I taught myself to crochet by watching youtube clips and not once did I swear or give up or throw everything across the room! Next step is to attempt more complicated patterns.
• Make an item every week of the year - Yep, can tick this off too. We're up to week 38 and so far I've made 104 items. I've made sensory gear for my little superheroes. I've mastered how to make Bucket Hats as O decided that everyone needs a bucket hat. I've made clothes and toys for my children and their friends. I've made gifts for people, I'm planning to make gifts for my little superheroes teachers. I've made book week costumes for both my little superheroes. I've attempted patterns that I thought were beyond my ability and I've had a ball so far!

• Rediscover cross stitch. This is something that I used to do all the time and then it fell to side when O came along. Now I just need to work out what to do with the finished pieces.
• I wanted to finish all the UFO's - or unfinished objects - that I seem to have on my sewing table by the end of the year. Am almost there, only a few to go!
• I wanted to make resources for O and L - can tick this off the list too. There are so many homemade toys and resources that can be made. Do you know how many common items there are around the house that can be turned into a sensory toy?

It is very satisfying to have an idea of something to create, pick out a pattern or at times draft a pattern from scratch, chose the fabric/wool/cotton and then slowly see the final product come together.

I have noticed that when I don't get the chance to do something for me, I start to fidget and am unable to relax and I become a little anxious. I guess it is a bit how O and L feel at times - they struggle to sit still, they struggle to concentrate and they need to express themselves in a very noisy manner.

When I am sewing - be it hand sewing, machine sewing, cross stitch - I go into my own little world and block out what is happening around me. I can escape from reality for a while!

So if you are on this marvelous journey called Autism, take up a hobby so that you can escape. It's much better than sitting on the bathroom floor crying, trust me!

What is it? Is it a tantrum or is it a meltdown?

One of the biggest issues that we deal with on a daily basis at Superhero Headquarters is behaviour. I know that all parents have to deal with behavioural issues but disciplining a child on the autism spectrum is, at times, a little more stressful than disciplining a NT child.

Before we finally got a diagnosis for L, actually long before we even started the assessment process for L, we had a lot of well meaning people, well I hope that they were well meaning and not just arrogant sods, try to give us advice on how to deal with L’s behaviour. We were told that we should attend parenting classes as what we were doing obviously was not working – and yet it was working for O. We were told “oh he’s just being a typical boy” and “he’s just showing his true colours” – what???? We were told “if you just ignore him, the tantrums will stop” – we tried that too and guess what, they didn’t, he’d just keep going.

L’s tantrums, well we were told that they were tantrums, were one of the many reasons that we continued to seek advice from medical professionals. It was only when we started doing a little reading that we came to the realization that he was in meltdown mode and then everything started to make sense. Sure, there were times and still are times when he is just chucking a tantrum but the majority of his and his sisters are meltdowns.

You see a tantrum has a defined want – it starts over a desire to want something, the child will often look at you to gauge your reaction and a tantrum will stop and start with ease. Quite often the child will stop when a) they get what they want or b) they realise that they aren’t getting the reaction that they wanted. You can reason with a child having a tantrum, you can sort of talk with them to help them calm down. During a tantrum, the child is in control of what they are doing and they may make demands – “I’ll stop if you let me watch TV.”

A meltdown on the other hand is a huge weather front that at times you can see brewing, that you just have to let run its course. A meltdown is not goal orientated. A meltdown is usually caused by the child being in sensory overload by the environment around them – too much noise, too many people, change in routines, bright lights, tiredness, strange smells. During a meltdown, the child has no interest in how you are reacting to them, they’re not in control and may injure themselves because they’re not aware of their surroundings. Meltdowns can be very, very slow to end. Meltdowns are noisy and they suck the energy out of the child and at times, out of the parent and siblings.

Now like many parents with children on the spectrum, I can see potential triggers from a mile away. I will go out of my way to avoid said triggers. I have an arsenal of distractions in my hand bag so that if I’m not able to avoid the triggers, I can at least attempt to disarm the triggers and try to make outings easier for my little superheroes. And if all these don’t work, there’s really no need to sound any alarms, my little superheroes screams will be warning enough to those around us that something is wrong. For you see, when either of my children reach meltdown stage, bombs away!! There is absolutely nothing that can be said or done to talk them out of that mode.

This is not to say that we just let them go – c’mon sing with me, let it go, let it go, can’t hold it back anymore. Sorry totally off tangent, not that let it go! Sometimes, the little superheroes just have to scream it out and other times, they are receptive to us cuddling or trying to distract them.

Just like I know what my little superheroes triggers are, I know that sometimes I just have to let them get all their anger and frustration out. They need to yell and scream and throw things. Sometimes I am just so emotionally and mentally spent, that in that moment I just throw my hands up, wish that someone would send me to time out, walk away, take a deep breath, count to ten and go back in for more.

Sometimes I can sense that I will be able to calm them down quicker if I sit with them. No talking, no cuddling, just sit and be with them until they’re ready to come to me.

And then finally, they’ll come crawling over for a reassuring cuddle and ask for a tissue. I’ll wipe their face and start thinking that maybe, just maybe the storm has finally passed and I’ll also be hoping like hell that they’re not recharging for round two. And then I’ll find L’s green blanket or O’s bitty bug, sit on the couch/bed/bathroom floor cuddling them and waiting for them to fall asleep.

They expend so much energy during a meltdown, that they’ll often fall asleep afterwards and that’s when my heart breaks and my tears will flow as I know that at times, there is absolutely nothing that I can do or say to stop a meltdown. I just have to be there for them so that through the meltdown fog, they know that we love them and are there for them no matter what.

And I remind myself that the behaviour wasn’t done on purpose, it was done for a purpose. L or O were trying to tell me something but in that moment weren’t able to express themselves using words.

I’ll then begin to wonder: how many grey hairs have I got now? Is that the phone ringing or my ears? Did the neighbours hear all that and are the police on the way? Can you lose hearing due to the screaming level of a child?

So the next time you see what you think is just a bratty kid having a temper tantrum because they’re not getting his/her way, please look again. It might be a temper tantrum in full swing or it in fact might be a child not coping in the environment and trying to tell his/her parents something. And please don’t give a condescending look to the parents, they are doing their best, they’re doing what’s best for their child. They might just be on this marvelous journey called Autism.