Thursday 27 April 2017

A Handful of Quiet by Thich Nhat Hanh


About a month ago as I was searching on one of my favourite online bookstores late one night, I stumbled across an interesting looking book titled A Handful of Quiet.

I should mention that I am known to purchase books because I like the look of the cover and I will admit that this is one such purchase.



On a side note, I am happy to say that thankfully I've yet to make a wrong purchase based on the look of the cover!

As the introduction in the book states, the pebble practice was invented by Thich Nhat Hanh a number of years ago as a tangible way for children and their families to concentrate on their breathing, connect with the world around them and learn the art of meditation.

I purchased the book with the sole purpose in mind of assisting O to ground her emotions when she begins to enter an anxious state.

After I gave the book to O and she had had an opportunity to read through it I asked her what she thought the book was about.

O answered with:

"This book tells us about four little rocks. The four little rocks represent a flower, a mountain, water and space. And these four things represent how we should feel about ourselves and other people every day. The book is going to teach me how to stay calm and happy and to think properly about problems that are troubling me."

I could not have said it better myself!



The book is written with children in mind. It is very well set out and very well written. Thich Nhat Hanh explains each step of the meditation process in very easy to understand language.

I think the book appealed to O as she loves collecting rocks.

We did have to go out and purchase four special pebbles, the ones from the front garden just weren't good enough apparently. O has been carrying her four little pebbles around with her since reading the book and occasionally I've been able to watch her sitting silently with the four pebbles in her hand contemplating the universe!


**** I do not receive any commissions of any kind for this review, it is simply a book that we have found useful. ****

Monday 24 April 2017

Anzac Day


Tomorrow April 25 is Anzac Day and it is one of Australia and New Zealand's most important national occasions.

This year marks 102 years since the original Anzac's landed at Gallipoli in 1915.


102 years since the first major military action fought by Australian and New Zealand forces during the First World War.

For those who are not aware, and hopefully there are not too many of you, Anzac stands for Australian and New Zealand Army Corp. The soldiers that were in the Australian and New Zealand forces very quickly became known as the Anzacs, they took a great deal of pride in the name that was given to them and that pride remains today in generations of Australians and New Zealanders who stop to remember.

Anzac Day goes beyond the anniversary of the landing at Gallipoli in 1915.


Anzac Day is the day when we stop and remember all Australian and New Zealanders who have served and died in war and on operational service.

Anzac Day is when we stop and show support to all those solders both past and present who have seen the worst of our world and yet they did not try to hide. Instead they entered those areas with faith, hope and courage. We stop and remember all those soldiers who entered the darkest time of our history to fight in hope of bringing light to it.

On Anzac Day we stop in silence and take a moment to remember and give thanks to those soldiers who were able to keep the darkness at bay. We also stop and give thanks to those who continue to keep it at bay.


The people who serve in our Armed Forces, past, present and future and no matter what capacity or rank they serve as, have chosen to stand and protect. They do not get a say in where they go, what they see, hear and feel or what they risk. They do this because they believe in a better future where all humankind will not have to make the same sacrifices that they have done and continue to do so.


On Anzac Day, my family stops to remember our relatives who fought for our country and lost their lives. We stop to show support to those relatives and friends who are current serving members of our countries armed forces.


On Anzac Day we stop to keep the spirit of the Anzac alive. We remember the qualities of courage, mateship and sacrifice that these soldier's carried with them and hope that we too can continue the Anzac tradition and carry these qualities with us throughout our lives.

"They shall grow not old, as we that are left grow old;
Age shall not weary them, nor the years condemn.
At the going down of the sun and in the morning
We will remember them."

Lest We Forget


The Ode, For the Fallen by Laurence Binyon

Sunday 23 April 2017

My Mummy IEP


Over the past week I have decided that I need a Mummy IEP.

What is an IEP I hear you ask? An IEP or an Individualised Education Plan is a document that is developed by teachers and other education professionals for children with special needs.

An IEP is developed with the child's education goals as well as any social, physical and behavioural difficulties or goals in mind and it is generally completed in consultation with the child's teachers, aides and parents. The IEP is reviewed periodically.

Regardless of the age or developmental level of the child, there are several things that the IEP should contain.......

........ An IEP should outline a meaningful education program, it should be age appropriate, flexible and future orientated.

........ An IEP should consider the development of the child's life skills and it should include short term goals that will lead up to the achievement of long term goals. The goals must be measurable and achievable and include a time frame as to when they should be achieved by.

........ An IEP should also include any shared resonsibilities so that all parties involved know what is expected of them in assisting the child to achieve their goals.

So back to my Mummy IEP.


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

Goal 1:

To remember to take the wet washing out of the washing machine once the cycle has finished and not have to rewash the load 2 or 3 times. This needs to be done a minimum of 3 out of 5 times with 75% accuracy.

Date Started: Too many years ago to mention.

Date Mastered: Minimum progress has been shown thus far. 

Behaviour Intervention Plan is recommended with a reward system in place to earn rewards such as a hot coffee, chocolate or a glass of wine.

Goal 2:

To remember to hang the washing out on the washing line instead of having to rewash it as the clothes smell stale because they have been sitting in the basket in the laundry for two days. This needs to be done a minimum of 3 out of 5 times with 75% accuracy.

Date Started: Too many years ago to mention.

Date Mastered: Minimum progress has been shown thus far.


Behaviour Intervention Plan is recommended with a reward system in place to earn rewards such as hot coffee, chocolate or a glass of wine.

Goal 3: 

To bring in the washing from the washing line once it is dry before it starts to fade and because the washing line is not a wardrode. This needs to be done a minimum of 3 out of 5 times with 75% accuracy.

Date Started: Too many years ago to mention.

Date Mastered: Minimum progress has been shown thus far. 


Behaviour Intervention Plan is recommended with a reward system in place to earn rewards such as hot coffee, chocolate or a glass of wine.

Shared Responsibility: All other members of Superhero headquarters need to remind Mummy that the washing is still on the line.

Goal 4:

To fold said washing before it turns into Mount Clothesmore and the little superheroes start mountaineering to retrieve their clothes. This needs to be done a minimum of 3 out of 5 times with 75% accuracy.

Date Started: Too many years ago to mention.

Date Mastered: Minimum progress has been shown thus far.



Behaviour Intervention Plan is recommended with a reward system in place to earn rewards such as hot coffee or a glass of wine.

Shared Responsibilities: All parties in superhero headquarters need to chip in and help out with the folding of Mount Clothesmore. Recommended to establish a visual board with prompts and then scale back the prompts as progress is shown because to be perfectly honest, this may be a bit too ambitious.

A team meeting is needed so that the superhero team can re-evaluate this goal.

Objective 2: To sleep in own bed.

Goal 1:

To sleep in my own bed for the entire night instead of on the couch or in the recliner or in a little superheroes bed. This needs to be done a minimum of 5 out of 7 nights with 75% accuracy.

Date Started: 26/02/2009

Date Mastered: Minimum progress has been shown thus far.



Behaviour Intervention Plan is recommended with a reward system in place to earn rewards such as hot coffee or a glass of wine.

Shared Responsibilities: The little superheroes need to sleep in their OWN beds so that Mummy can achieve the sleep level that she requires to be a functioning member of society instead of being a Mummy Zombie. Recommended to establish a visual board with prompts and then scale back the prompts as progress is shown because to be perfectly honest, this may be a bit too ambitious.

A team meeting is needed so that the superhero team can re-evaluate this goal.



Wine, chocolate and hot coffee are an autism Mums greatest incentive!

Saturday 22 April 2017

Phrases that you don't want to hear a doctor say!

There are certain phrases that you just do not want to hear your doctor say. Ever. These are phrases that invoke panic and fear and uncertainty and confusion and they are generally not great for your mental well-being.

Last week we experienced an incident such as this.


On Wednesday morning, L woke with a rash on his tummy and a sore right ear so it was off to see our wonderful, understanding and very patient GP.

He took one look at L's rash and said "well, it isn't chicken pox (thank goodness as I was dreading having a weeks holiday with a child with chicken pox) let's look in your ear."

The GP took a look in L's right ear and wouldn't you know it, the ear was inflamed and infected, hence the cause of the rash.

The GP then checked L's left ear and his exact words were "what's that?"

Huh? What on earth are you talking about?

Seeing the confused look on my face he continued with "come over here and look!"

As I went over I was thinking WTF am I about to see and when I looked through the ear scopy thingy I saw what the GP saw, a tiny blue bead.



What the hell? Why? Just why? And then how? And then why again!

Well of course L wouldn't let the GP anywhere near him. Our GP can't say that I didn't warn him first, so it was off to our local hospital.

You know that you frequent the Accident and Emergency department too often when the Triage nurse recognies your child and says "what have done this time buddy?" On the bright side L brightened right up when he saw his favourite nurse!

And of course the attending doctor then says "I haven't removed anything from a child's ear before today." Of course you haven't, well he has autism and won't let you go near his head without a fight, sedation is a good place to start.

Nope let's just hold L down on the bed and try our luck with a tiny suction gadget thingy. You'd think that I should know the names of the gadgets by now but nope. Not a chance, I have too many other terms and information to remember.

With a lot of screaming and L tensing the doctor was able to get the blue bead out. Then when she went to check L's ear, the words "ahhhh, Dr ............ there's another one."



Of course there is!

They weren't so successful at getting the second one out and told us that we would have to go up to the Children's Hospital the following day to get it removed as they had a special unit especially designed for getting foreign objects out of children's ears and noses. When we heard this part, Daddy superhero and I both started giggling.

Sometimes you just have to laugh!! If you don't laugh you will cry and at stage we had L on the bed sobbing his heart out and O screaming like a banshee under the table as there was blood everywhere and her little brother was crying. Yep, they'd managed to damage L's ear canal in the process of trying to remove the second bead.

So a visit to the Children's hospital occurred on Thursday last week. L had his fourth general anesthetic in 3 and a half years and the said bead was removed from L's ear.



When L realised it was a green bead, he said "oh my favourite colour!"

Yes it is buddy but why is it in your ear?!?

L has been proudly telling anyone and everyone about the beads in his ear and has stored the two little specimen jars in a Batman tin for safe keeping. Isn't that where everyone keeps souvenirs from a hospital stay?

I in the meantime, every time I see a little bead on the floor I am throwing them in the bin. Never to see the light of day again.

And the rest of the beads kit has been stored away somewhere where I will hopefully forget where I put them so that when O and L want to play with them I can respond with "I'm really sorry but I'm not sure where they are."

Or, even better, hopefully the little superheroes will forget all about them and the offending beads can be slyly thrown away next time we do a big clean out!

Life is never dull!

Thursday 20 April 2017

How can Autism present in girls?


After we'd been through the ASD diagnosis process with L and had received his official diagnosis, we began to notice that O was presenting with quite a few ASD traits. We weren't sure if we were noticing O's traits because we were more aware of them due to L's diagnosis or if she had in fact been presenting with the traits the entire time.

O has always been an anxious child, she has always found something to worry about. In the past we have tried numerous techniques to try and assist O with her anxiety but all to no avail. In the second half of last year we came to the point that we needed to seek the assistance of a child psychologist. During O's second session, the psychologist took me aside and suggested that we should look at getting O assessed as she strongly believed that O was on the spectrum.

And wouldn't you know it, O now has a provisional diagnosis of High Functioning ASD, not that medical professionals diagnose children with High or Low Functioning ASD anymore. However the scale of 1 to 3 that a child receives reflects High to Low Functioning.

During O's diagnosis process I began to ask questions of the medical professionals that we were visiting frequently and also began to do some research of my own.

How on earth had I missed O's ASD traits? They were there the entire time and I had missed them. Why? How?



Well.......

For a start, girls are generally brilliant at masking their traits by either copying or mimicking their peers. It is only when the social and emotional side comes more into play as girls grow older, that girls with ASD begin to struggle. It becomes more difficult to understand and mimic others emotions and social interactions as these become more complicated.

O has always been a little copy cat. I used to regularly comment when she was a baby and toddler that it was as though she was watching the other children around her before she practiced a new skill. And when she did "practice" a new skill, she often succeeded on the first try.

Last year O really struggled to understand the girls in her class and others that were older than her. She would often tell us that she didn't understand the way that they talked or acted. It was becoming harder for her to blend in.

Girls, ASD or not, often know that standing out in the crowd is generally not a great thing to do. They will have enough skills to be able to blend in with their peers. They watch and observe and then use their intelligence to join in on social situations. Girls will learn socially appropriate and acceptable behaviours such as maintaining eye contact, memorising phrases that are commonly used and imitating the facial expressions of others.

O is variable when it comes to maintain eye contact. She usually finds eye contact difficult however occasionally she will maintain eye contact but the catch is that she is in fact staring at you. It can become very uncomfortable.



It's often known as Autism camouflaging and as a consequence of being able to camouflage their traits, girls generally stay off the radar and are diagnosed at an older age, compared to boys with ASD. Girls are usually diagnosed after the age of 6 or 7 or even older as a teenager.

There are numerous females that have gone through their life undiagnosed until they begin the diagnosis process with their own children. It is during that process that they begin to relate to the criteria being used to assess their children. I am one such adult - I can see a lot of myself as a child in O. I have also been able to relate my teenage years and how I was feeling to the diagnostic criteria.

This is not to say that girls are not diagnosed before the age of 6 or 7, numerous girls are diagnosed younger than that and it is most likely due to the fact that their ASD traits were obvious. Children present ASD traits in many different ways, there is no typical way of presenting. But what Autism researchers are finding is that more and more girls and women are coming forward to be diagnosed.

The original DSM criteria was very much male biased. In fact ASD used to be thought of as a male disorder as females were rarely diagnosed. In the past girls may been misdiagnosed or missed altogether simply because at times they do present differently to what the criteria is suggesting. Or the traits simply didn't stand out to those adults around them.

When Dr Hans Asperger originally reported about Autism in 1944, he initially only found it in boys and he stated that "in the autistic individual the male pattern is exaggerated to the extreme.....it could be that the autistic traits in the female only become evident after puberty. We just don't know." (Firth, 1991, pg 85.)

In fact for every four boys who are diagnosed with ASD, only one girl will be diagnosed. Obtaining a diagnosis for a female can be a very challenging process. The idea that girls can present ASD traits differently to that of boys is a relatively new concept and as such not all medical professionals are in agreeance.



Neurotypical boys and girls differ in terms of how they socialize, how they communicate and in their behaviour. It is safe to stay that ASD children are no different.

In saying that, I do need to add that boys and girls with ASD are also similar in many ways - they all have difficulty relating to and communicating with other people, they may have repetitive behaviours, they may be fixated on a special topic or interest and so on.

But those similar characteristics which both girls and boys both experience difficulties with may present differently between the sexes.

Boys will generally act out their frustration behaviourally when they are unable to understand social situations. Girls however tend to internalize their frustration and are less disruptive at school. At school they are well behaved and generally fly under the radar. They are quiet, helpful and kind and may appear to be shy or sensitive. This in itself makes it very difficult to convince educational and medical professionals that something is not right.

O worked out very early on in her schooling that acting out at school was not a good thing, she did not want to get into trouble so she would internalize all her frustration and then release it all when she arrived home. Her teachers have never seen this other side of her.

This is the downside of camouflaging - it takes a considerable amount of mental effort to be constantly on the ball when in social situations. This leads to mental exhaustion and it does take an emotional toll on the individual and their family.

Constantly camouflaging leads to high anxiety which, for girls, rarely presents at school or in social situations. Boys may become disruptive when in an anxious state, girls tend to internalize their anxiety and let their emotions explode when they arrive home to their safe place. This is O to a tee......




Other ASD traits that girls may present with include:

At times girls with ASD will possess the ability to read above their developmental level, however their comprehension does not always match their reading skills. They may have an average or slightly above average IQ, will receive good grades and not appear to struggle academically which leads to confusion among educational and medical professionals during the diagnosis process.

Girls may be book worms or love to write creative stories and they often have the most amazing imaginations. The stories and poems that O composes are simply amazing. We have been told recently that girls with ASD do not have an imagination, however I beg to differ.

Girls with ASD will often prefer the company of much older or much younger children. They generally like to play the same game and play the same role every time! O played a game when she was younger called Mummies and Darlings. She was the Mummy and I was the darling. She would fall into the Mummy role and would not break character. This game could go on for days, we'd go to sleep at night and when we awoke the following morning, the game would continue. And if I broke character, hooley dooley, O would completely lose it!

Girls with ASD may go to a speech therapist for their speech when they are quite young but this initial speech issue is initially unrelated to Autism. As a baby and toddler, O suffered from numerous ENT issues to the point that between the ages of 2 and 2 and a half she could not hear. Missing 6 months of hearing affected how she learnt new sounds and as such when she entered Kindy she was unable to pronounce certain sounds. O attended speech therapy for approximately 18 months to correct her speech pattern.

Girls with ASD may have repetitive behaviours and special interests like their male counterparts however these can look different as well. L has an obsession with anything and everything to do with superheros - clothing, toys, books, bedding, facts, comic books, TV shows ...... O has special interests, Monster High Dolls and Shopkins are some of her interests, but these are very similar to those interests of typically developing girls. O has collections of objects, one being tiny bits of paper. This type of collection is generally not common amongst neurotypical children!

At school and in other social situations, girls with ASD may spend a considerable amount of time either alone or looking for opportunities to help out other children or their teachers. We're constantly told that O is always helping other children at school and that she likes to help the teachers during recess and lunch. Mmmmm....


Having now completed the diagnosis process with O and having to look closer at her traits, I can see that her traits were there all along but other than her anxiety, none of her other ASD traits stood out like L's did. O's stimming didn't stand out as being odd, her collections and obsessions were similar to those of other children her age, being first time parents we put her favouring of certain foods down to being slightly fussy. O has a variable pain tolerance. I could go on but hopefully you get the picture.

What I can tell you is that we have had several years of feeling like we were banging our heads against a brick wall when trying to explain her emotional outbursts and we now know why. O was simply presenting her ASD traits differently to other children.

One important lesson that I have taken from O's diagnosis process is that it is paramount that parents are listened to by educational and medical professionals when they are desperately seeking answers for their children's behaviour.

I'm not in any way dismissing how other children present with ASD, there is no typical way. As the saying goes, if you've met one person with autism, you've met one person with autism. Some children present with autism traits at a younger age than others.

What does need to happen is more awareness of the difference in autism traits. The more awareness that there is in the educational and medical system, the easier it will become to get our children the help that they desperately need.

Reference:
Firth, U. (Ed). (1991) Autism and Asperger Syndrome. London: Jessica Kingsley Publisher.

Monday 17 April 2017

Happy birthday little man xx

My little man turns 5 tomorrow! My baby is no longer a baby!


My little man was delivered kicking and screaming at just after 7 in the morning on the 18th of April 2012 and he's been a constant noise maker ever since.

L was the biggest baby that was delivered on the ward that day, at a whopping 3.75 kilograms! Well okay, he really wasn't a big baby but he certainly was the biggest baby on the ward and the loudest! L was born with a slight tinge of jaundice and a head full of snow white hair.

He was an instant hit with all the midwives and other nursing staff and of course with us. During our four day stay, I'd often have to meander down to the nurses station and collect him from the special care nursery. He didn't need to be in the nursery, the staff were just very taken with this very beautiful baby.



And he's still making fans to this day.

L is my cheeky little daredevil, sometimes cuddly, never ending ball of loveable energy. He is constantly on the go, always investigating how things around him open and close, always climbing up and over furniture. He worked out how to climb out of his cot fairly early on in the piece and could often be found underneath his cot when he really should have been in it!



He rarely stops still and when he does it usually means that he is sick, really sick.

L has been through a lot of health issues in the last 5 years, some are thankfully working themselves out and others we are learning to live with - asthma, inverted sternum, bleeding from the bowel, multiple respiratory tract infections, more ear infections than I can keep a track of and the possibility of an immune deficiency. At one point L had a favourite nurse in the ER of our local hospital and last week, thanks to L deciding that two beados needed to go into his ear canal, we have found out where Kryll now works!

L has given us many heart starts in the last 5 years and no doubt there will be many more to come. Face planting multiple times on the concrete at home, trying to set the house on fire by turning the stove on without us knowing, emergency dental surgery on Mothers Day 2016, trying to impale a garden hoe between his toes, splitting his head open on a cupboard and more lumps, bumps and bruises than you can poke a stick at. You name it, L has done it or he has at least given it a decent shot!



L has also had to overcome a great deal of obstacles in the last 5 years. At one point we were constantly told by medical professionals and educators that L was just a naughty boy. However we knew differently.

L was simply marching to the beat of his own drum and his ASD diagnosis was one of the best things that happened. We had an explanation as to why he did certain things and acted the way that he did. The diagnosis certainly wasn't an excuse for his behaviour, it was the start of a whole new world for L.

Since beginning his journey with the Early Intervention centre, L has made the most amazing progress and he continues to do so on a daily basis.



Now, no matter how large or small the obstacle is, L will find a way around, over or under it.

L is always surprising me with his never ending questions, his new words and phrases and with his actions. From asking me to dance with him when we were on holidays last year, to telling O that she looked beautiful when she was dressed up, to the surprising kisses and telling me that he loves me. L really is a sweet little superhero. He may be small but he has a ginormous heart.

L loves, no adores, anything to do with superheroes and he is most comfortable dressed in a superhero costume - some days he will change costumes on numerous occasions. When dressed as a superhero he is truly in his element.


L has dreams and aspirations as all children do. From being a garbage truck driver to an astronaut to being the next Batman, it always changes.

I know that L will keeping reaching high and he will achieve anything that he sets his mind to. He has already shown me that he is capable of learning new skills and reaching great heights.

I couldn't have wished for a more courageous, unique, loving, slightly crazy but always amazing little man. L really is my real life little superhero.


In the words from one of L's new favourite books:

"Could I be a hero too?

Will you teach me what to do?
You can be one if you're smart
and you try with all your heart!
Show you're fearless, brave and tough.
Strut your superhero stuff!"


Happy birthday little man, I love you to the distant galaxies and back xxxx

You are my favourite second baby!

Friday 14 April 2017

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.

Tuesday 11 April 2017

My Little Superheroes Sensory Diet


Quite often ASD and Sensory Processing Disorder (SPD) go hand in hand. Quite a number of individuals on the spectrum have sensory processing difficulties and children who are diagnosed with stand alone SPD, are often later diagnosed with ASD as well.

SPD is a dysfunction of the nervous system  and put simply, the way in which the nervous system receives messages from the senses and turns them into the appropriate motor and behavioural responses are affected. The nervous system of individuals with SPD misinterpret everyday sensory information such as touch, sound and movement. It is a complex neurological condition and it is estimated that 1 in 20 children are affected. There is no cure for SPD and individuals with the condition have to find coping mechanisms or avoid their known triggers.

Individuals may have an over-responsive reaction to the environment and be sensory avoiders or they may have an under-responsive reaction and be sensory seekers, or they may have a combination of both depending on the environment and the trigger.

L has an over-responsive reaction to noise, bright lights and the general busyness of places. He has an over-responsive reaction to certain food textures, his hair being touched, certain clothing textures and brushing his teeth. Yet L is under-responsive to pain - he doesn't seek it out, although looking at all his cuts, bumps and bruises you'd think he does seek out pain, L just doesn't feel pain.

O has an over-responsive reaction to tight clothing, loud noises, textures and smells of food, brushing her hair and brushing her teeth. She also has an over-responsive reaction to pain.

How individuals react in different situations differ. Just like no two people on the autism spectrum are the same, the same can be said for SPD.

The one thing that all individuals with sensory processing difficulties have in common is that quite often they will end up in meltdown mode due to the impact of their environment.


The question begs to be asked - what does SPD feel like? Our pediatrician described it as that it isn't that O and L are being fussy, their skin literally feels like it is crawling when they encounter textures that they don't like. Or that it feels as sounds are piercing their ears when they hear them. Or that the tags on clothing feels like sandpaper on their skin. I would imagine that it would be an immense feeling of discomfort.

So what do we do to minimise the impact of these sensory issues on the little superheroes I hear you ask?

Well......
Work out what their triggers are......

We worked out very early on what triggered O and L's reactions and where possible we avoid the triggers like the plague.

One of the major issues for individuals with SPD is that they cannot go through life forever avoiding their triggers. They probably could if they wanted to go to that extreme, however that would leave them completely housebound and cut off from the world. It would be a pretty miserable way to live.

At some stage they are going to have to learn how to cope with the triggers and manage their reactions.

If we are going somewhere that we know may potentially become a trigger, we will warn the little superheroes beforehand. This is so that they can be prepared for the environment. If it is a place that we may need to visit frequently, for example a shopping centre, we will start off with short visits and lead up to spending longer periods of time in the environment. It's all baby steps!

Create a Sensory Bag.....

Both L and O have a sensory bag that contains toys, an assortment of objects and sensory tools that help them to cope no matter what environment they may encounter. One of the first sensory tools that we purchased were two pairs of block ear protectors. These go everywhere! If you did a survey of ASD families around the world, you would probably find at least one pair of block out ear protectors in each household!


The other items that my little superheroes use on a regular basis are a weighted blanket, sensory body socks, squishy plastic balls, a sensory chair band, marble mazes, fidget cubes, calm down bottles (warm water, glitter glue and fine glitter,) a small plastic bottle with rice in it to shake, plastic chew necklaces and a peek a boo bag (fabric bag with a clear plastic window and the bag is filled with beads and small toys to find.) Basically anything that O and L can squash, squeeze, shake or manipulate.

All of these sensory tools are designed to occupy or distract the little superheroes so as to keep their minds off of the environment around them and assist O and L to focus on anything other than the sensory overload. Some of the sensory tools can also be used to help them concentrate in class.

Give them sensory breaks.....

Sensory breaks are also known as a sensory diet. The term is thought to have been coined by an Occupational Therapist named Patricia Wilbarger. The idea behind a sensory diet or sensory break is that an activity plan is carefully designed and personalised which provides the sensory input that a child or adult requires to stay focused throughout the day. We all need a balanced amount of sensory information in our bodies each day to allow us to work well, some individuals need more or less than others.

Throughout the day the little superheroes take sensory breaks to either escape from the environment or to increase their sensory input so that they can concentrate a little better.


At school L has a sensory choice board whereby when he needs a sensory break, he can choose how to have the break. A sensory break can be as simple as a firm cuddle or a run in the playground, he could bounce on the spot or use his sensory body sock. At home we take L out to our trampoline at all hours of the day and night! At the moment L is unable to tell us when he needs a break, it is up to us and his teachers to determine when he needs one. However the plan is that eventually he will be able to make the choice as to when he needs to take a break.

I have heard of a child who does errands around the school when they need a sensory break. Their parent sent a collection of envelopes to school with the child. Each envelope was addressed with office, library, music room and so on.

Inside the envelopes were notes along the lines of - "Please read this quietly, smile at me and then send me back to class."

When the child needed a sensory break, either because they were over or under stimulated by the class environment, they were sent on various errands with an envelope around the school. Just that 5 minute break out of class was enough to get them back on track. Such a simple yet effective idea.

Give them plenty of Encouragement and Reassurance.....

It is so important to let our children know that it is okay to feel a little out of sorts in particular environments - I am sure that everyone at some stage has felt overwhelmed by the environment around them. Individuals with sensory processing difficulties feel overwhelmed on a much more regular basis.

My little superheroes need to be told that everything is okay and that they will get through it. But it is also important to me that I try to encourage them to try to tough it out for as long as they possibly can. As I mentioned earlier, they are not going to be able to go through life forever avoiding their triggers. My little superheroes need encouragement so that they can learn how to manage their reactions.

It is also vital that we don't become stressed about the little superheroes reactions when they are over stimulated or under-stimulated. Us becoming stressed is only going to add to the chaos which will then make the situation a whole lot worse.

So, if you are ever in sensory overload, stay calm and have a sensory break!