2016, the holidays, and progress......

A.J. is a unique and special individual,
we love and adore everything he has become.

2016 has all but come to an end,

This year has been so busy, my mind's been all over the place,

being involved in so many things and trying to keep the usually level of control and harmony with our regular routines.

A.J. faced a lot of unusual experiences, some good, some bad, some just different.

He still struggles with anything that's inconsistent, especially when it involves anything he perceives as non-relevant to him, then it is all the more difficult to accept or take hold of.

With all this A.J. has still managed to progress so much, with the support from his school being such a big influence, as they helped him understand he is more capable than he realised, with the rest he'll always have someone to help out.

Accepting that our little man is not so little anymore, seeing him consume the teenage sector of his growing stages,

and along with that bringing some bonuses, and some 'downfalls', as he discovered.

"My Diagnosis and My Reality" - explained by A.J.

compassion and understanding for all

The other day while chatting with A.J. the topic came up about what makes people like or hate other people!

I tried to explain how it was hard to know what others may think or feel about things they don't know or understand,

sometimes they may be a little frightened of something or someone that is "different"

the teenage years and more....

A.J. trying outfits
for his upcoming play

Over the past few months I've been tied up with so much,

Hashing out ideas and plans to generate awareness and support for our locals,

Initiation and establishment of our first annual Accessible Lifestyle Expo,

Spending most of my spare time working out schedules, arranging participants, supporters with donations, then correlating everything with my co-planner.

All this happened while still juggling the usual support group meetings and sewing/craft sessions I run, along with any additional meetings and planning appointments.

At home I'm trying to find ways to help A.J. cope with a lot of personal changes he's going through and how he can understand and accept them at his level. The teenage angst has hit with a vengeance and A.J.'s struggling to understand the concept of where and how he fits into the whole thing.

Community Connections and Support…

overlooking our lovely valley..... our home 

Sometimes we may have moments that see us in a rut, powerless to balance out the day's events,

being unable to focus on those all important and necessary items, chores, or tasks.

Unfortunately over the past few weeks we've seen just that,

 it seems the universe has had alternate ideas than what we had planned or expected for us,

So Many Different Beginnings.

A.J. from beginning to now
 as the journey goes on.....

We all begin our journey from mismatched perspectives, with pathways all heading in different directions, and yet we can still connect together and relate in a way that will bind us.

Everyone has a story to tell, although unlike the 'standard' family's tales, those of us with our adorable quirky kids can tell an amazing array of stories like no other.

Ours was one, showing a family torn apart and shattered, after receiving the knowledge our own grandson was in crisis and needed our support. Stepping in and fighting with all of our very being, everything and anything we had, to gain the right to care for him in the way he rightly deserves, as does any and every child.

Guiding that same young child from the tender age of two into his teenage years, while learning of his lengthy multiple diagnosis, supporting him every step of the way, through understanding and acceptance.

Together while facing his demons, and make a full 180 degree turnaround from what was experienced on those very first days.

Showing that anyone can achieve the very best outcome, with a little patience, hard work, and a lot of love.

Accessing Help Within the School Environment

Last night after arriving home from attending another P&C meeting, I sat down with cuppa in hand and perused the leaflets handed to me regarding the amended 'standards' for students heading towards their HSC.

Now, it may be known A.J. is only in year 8 and a long way off his year 12 studies and the HSC, although with the expectations put on them they need to begin to prepare now for what they are heading into.

Add to that the additional demands and stresses on an ASD, special needs, or disadvantaged child, and the concerns may increase dramatically.

Sensory Diet, products and support

a few little items that can be helpful with sensory calming

 Many autistic kids struggle with processing different forms of sensory input.

This involves either 'over' or 'under' stimulation from the sensory areas of touch, taste, smell, sight, hearing, movement, and body awareness/balance.

When addressing this we first need to understand how the process works, starting with how the brain receives and organises sensory input from the surrounding environment.

Finding his own Personality

allowing A.J. to be himself can be portrayed in many ways... 

Days are flying past us at such an unimaginable rate, and we never seem to find the time for the little things.

It only feels like yesterday that a little frightened, timid, 18 month old bundle came to live with us, and yet I see this handsome 14 year old standing in front of me, already beginning to tower over me.

A now confident inquisitive teenager wanting to explore the world he lives in, questioning anything and everything he encounters.

As he gains more confidence to take yet another step towards independence, we still see the signs of insecure, indecisive, emotional, and physical restrictions that can so easily revert him into a huddle at any given time. Yet this still won't hold him back when positive moments take hold.

Weighted Blankets/Doonas and other Sensory Products

A.J. with Laura chilling out together

Finding the correct and appropriate products that will suit and benefit you, the consumer, (or more importantly your child), on a personal level, may at times be hard to source.

I personally know and understand the struggle, when first learning of sensory issues with A.J. I was confused by all the different things out there, how to use them, and if they were really worth it.

Searching for the tried-and-true products that will actually aid and assist to help calm and settle our kids during their most vulnerable Melt-Down moments, and not cost the earth.

Luckily for me I am very crafty, and willing to throw myself into the sewing room and give anything a go.

The first product we tried and were a great hit with A.J. was the basic lavender/wheat heat pillows.

Wanting to find a way to keep him warm, during his "I'm cold...." moments,  and not liking the idea of the old fashioned hot-water-bottles, I adapted the lavender/wheat heat-pillow into a larger size to accommodate his need.

The result being, I realised he was also using it in the form of a weighted blanket by laying two on his chest and torso, while gaining the added benefit of the heat he was seeking.

Progress, Development, Future prospects, Proposals.....

Over the years since I began to promote awareness and provide help, supports, and a better understanding, for ASD and Special Needs kids, I have come into contact and met with many different people from many different areas, covering all aspects from parents/families/carers, to service providers, and everything in between.

Many hours spent and many meetings have been held, all for the purpose of searching and researching the best ways to help our kids, for my child, and all those I have connected with within our community, as well as others from a far distance through our Facebook pages.

The next step to understanding the Senses....

Taking a closer look at our seven senses, by breaking down each group to better understand what they do, and what each one means for an ASD and Sensory Processing diagnosis.

It is easy to overlook the concept of our Sensory system in everyday life, no-one really specifically takes notice or acknowledges how every dynamic can effect our natural reactions to daily actions.

The benefits of Weighted Blankets.

quilt design option 

Deep Pressure Touch Stimulation (DPTS) refers to the application of a tactile stimulus to help provide the feeling sensations received from a firm hug, cuddle, squeeze, stroking motion, or massage. The calming element to settle nerves and emotional wellbeing.

The use of specific weighted products help to give the same deep pressure massaging effect in a non-invasive manner to help release Melatonin, Serotonin and Endorphins, the hormones that regulate various human functions such as sleep, appetite and mood.

Serotonin produce a calming action, sending soothing messages between nerve cells;

Endorphins are "Happy" stimulators with natural pain-killing substances;

Both bring pleasurable feelings, elevated moods and calmness of body and mind.

Melatonin is a substance regulating circadian rhythms to control sleep patterns, hormone release, body temperature, and other human functions.

Homework - Am I doing the right thing???!!!!

A.J. and Myself,

we have a great bond together

I am just another person, no-one special, someone taking each day as it comes, facing the same issues as everyone else, at times struggling to make ends meet, and definitely with no idea of what is going to present itself tomorrow or the next day.

At times we have, and still do, struggle to understand the whole picture of what A.J. has been and is still going through; and with his additional needs, why it had been so hard to gain those much needed supports early on, fighting for every piece of assistance and understanding.

For that very reason I stepped up and did what any loving caring 'parent' would do and sought out whatever he needed, gaining anything and everything that I thought would help to better his chances to be an active participant in "Life".

Some Days are a Struggle...

A.J. relaxing after a long day of therapies

Why is it so hard for us to gain official understanding of what our kids go through.

Why is it so hard for the bureaucratic officials in their high-end offices, the same ones that are not even fully qualified or experienced in these areas, to truly understand the day-to-day struggles and torment our kids face.

I am at the moment so angry and stressed.

After fighting for years to have someone give acknowledgement A.J. needed additional help, fighting by myself to find the right direction, struggling to seek the right services required, to start down the pathway of understanding and supports, taking till he was almost 10 years old before the links were finally placed and the 'official diagnosis' of Autism Spectrum Disorder given.

Fighting again and again to gain help through the official channels, for recognition as to A.J. having an actual diagnosed Disability, to help him source funding for his much needed services and medications, etc.

Then taking till this year for those pieces finally reaching and connecting with those much needed additional supports and

assistance, by linking to NDIS and more services that will help A.J. come out of the fog, gaining understanding and progress within himself.

What is SPD.... Sensory Processing Disorder????

helping to gain harmony within the seven senses 

When 'explaining' our child has ASD, Autism Spectrum Disorder, (or - is Autistic), there are still many people who will state they have no idea or knowledge regarding the exact specifics or understanding of the diagnosis/disability.

Then explaining the additional conditions the main cause of underlying concerns, it may confuse them even more.

*Noting* I know, most Autistics or family members don't like to label ASD as a disability, and in the general sense I can agree, although there are moments, like this, when it's the best way to explain the full extend of what ASD represents.

In general many have come to accept the term .... "Special Needs", this covering all areas of their diagnosis.

To help newcomers and novices better understand what they're beginning to encounter, or for some of us 'old-hats' at the game, to refresh our minds about a few things we may have forgotten, or to help with a new issue that may have recently arisen, etc, I will begin by reviewing the different dynamics of Autism.

Everyone, goes through those, when-will-it-end days.

those special moments with those that matter
A.J. and Laura bonding time

We don't have to be Autism parents to face any unknown areas of LIFE ...

Days when we question everything we do, hoping for something positive, wondering why we're the ones that seem to repeatedly fall on bad times, struggling to make ends meet, wanting the best for our family, trying to find that perfect solution to an imperfect situation.

Facing everyday situations as everyday people. Trying to make our lives look ....... "normal".  

Yes I know we have additional requirements that we have to continually face, although we must remind ourselves that at any given time 'Neurotypical' families can also face unusual events that can place them in difficult situations as well.

No-one is immune from dilemmas and dramas.

A Day in the Life of......

one of the performances at our local Ironfest,
fun events and lots of noise although A.J. still enjoyed the day

It's been a long hard journey, we can all agree to that, trying to help our not-so-little man address every part of his diagnosis and overcome each obstacle and complication as he faces them, while also helping him to manage every setback.

So when he reaches each new milestone, we all instinctively understand the need to acknowledge it.

No matter how minimal or insignificant others may view each single step and achievement, to us they are all worth celebrating.

Those 'simple' accomplishments may have been the reward for months and months of therapy and specialised assistance, as well as repetitive learning and training programs.

Knowing and Understanding the Full Picture.....

special moments with Laura
can made all the day's anxiety disappear

Our kids are very prone to facing medical anomalies, and A.J. is no exception.

From the time he came into our care at only 2 & 1/2 years of age, we have addressed so many medical and personal issues, most being out-of-the-norm to many children.

Before we even knew about, could acknowledge, or address the symptoms and diagnosis relating to A.J.'s Autism, we had to understand and decipher the initial concerns relating to the neglect he faced prior to being with us, leaving him not only malnourished, but also facing many delays, plus additional emotional and physical difficulties.

Not knowing where to go or who to turn to for help or support, we faced the groundwork ourselves, working hard to help him, step by step, to gain confidence and trust with everyone and everything around him, addressing each and every issue one-by-one, at 'his' pace.

The honesty of Autistics -

one thing we can definitely expect......HONESTY

In reality, it is so refreshing to see many of our children actually being able to have a voice and to express verbally their own feelings and thoughts, although all too often their display of 'the truth' will be misunderstood by others.

As our kids struggle to understand the expected 'social niceties' or 'specifics of expression', especially when they're still struggling with the basics of correct verbal communication, the results are negative reactions from others hearing/reading the words or comments!

To these kids a spade is a spade, so why call it a shovel or scoop?

Helping to understand the NDIS process.....

having a folder with all the relevant information is a must 

How many agree......

When originally looking for supports, regarding the right direction for accessing assistance or sourcing specialised services, and so on, the information you found was so overwhelming, swamping you with conflicting so-called well-meaning suggestions and ideas on what to do and where to start, that you were more confused than before you began looking?

I definitely agree - 'YES' I did fit that category.

Ready for anything... the challenges continue...

it's so important to focus on the positives

One of the hardest parts of Autism, we, as parents, have to address, is facing the subject of ‘Medication!’

Many of us at some point have had to (or will have to) confront these discussions, make the decisions, attempt the reality, and accept the outcome.

Along with making the decision to begin trialing these supports, having to make adjustments and changes as they get older, addressing any side effects and other issues that go along with it, while also deciding whether they are effectively working and fully beneficial to our child.

As hard as all that is to deal with, we are also being confronted and bombarded with the social stigma and other people's personal opinions on what 'they' think is best.

Supportive and Nurturing ways to Socialising......

socialising the best way for the child
(picture from clipart)

The one thing I continually stress and worry about with A.J. is the interactions he has/doesn't have with his peers. Knowing how he still struggles with the correct verbal expression in relation to his conversation with others.

Without knowing the context of what is appropriate and expected verbal banter, having his own format of using unconventional conversation content for expressing his opinion and lifestyle, totally confusing and bewildering anyone not use to this form of interaction.

A child is a child first and foremost...

***please also read footnote***

While chatting over time with different clients, service providers, and more, I've noticed a pattern forming regarding the personal opinion and option preferred regarding the wording for the diagnosis terminology,

-whether it be - eg- "autistic person" or 
                          "person has/with autism"

Some will even become very pedantic or offended when hearing someone use the other preferred option.

I myself have used both at different times, and can say I have no preference.

Realistically we need to get back to basics and remember that we are all facing the same situations and should be as equally considerate to others as we want received back.

IEP and school progress......

knowing what they need is the first step,
the second is making sure they gain it.

The school called to set out an appointment for A.J.'s new IEP plan.

After having years of fearing these dreaded meetings, knowing I would be there alone facing a team of so called 'professionals' dictating their opinions of what was best for the school and what was expected from A.J. without accepting any input from me or for what was best for A.J. 

I would spend days correlating information and evidence of what would be best suited for A.J.'s needs, plus providing proof to why I would state their demands were unreasonable.

The emotional outcome of these meeting would leave me drained for days, and stressing about how I could better support my child through what should have been an enjoyable life experience.

Having Moments......

A.J. and our little Laura,
she's becoming so helpful  

Facing an emotional roller-coaster for any reason can be a hard thing to handle in normal situations, so when we add the sensory and anxiety issues our ASD kids face it becomes a whole different ballgame. 

Unfortunately today at school was one of those days for A.J. and the result was evident after picking him up in the afternoon.

The moment happened after trying to hold his emotions in check all day, then when finally making it to the safety of our car with someone he can trust to help out he had a relapse and lost emotional control. 

Meetings, appointments, therapies and treatments

sharing our love with A.J.
the moment we were blessed to have him permanently in our lives.

At the start of every year we have the tedious task of gathering together the long list of services and supports A.J. accesses throughout the year and begin organising new referrals, updated reports, to then arrange new appointments and meetings for the resources that are working and still required, or if we need new direction and assistance to then begin researching for what is required and available.

Once we have correlated everything together and happy with what is needed, we then begin the task of fitting everything in with the family schedule.

Finding easy ways to survive and enjoy homework sessions...

a well set out study area
makes it more encouraging 

Every family that has faced their child's journey through education, stepping onto the homework path, will admit that it is not the most exciting part of the learning experience.

So with only a few days left before the beginning of yet another school year, I thought we could look at the lighter side of coping with the dreaded Homework task.

All too often our children come home tired and grizzly wanting little to do with what they had just faced at school all day, opting to head outdoors or chill-out in their own manner.

Add to that the stress sometimes faced with our special needs kids having different forms of learning difficulties, sensory sensitivities, etc, and it can become a recipe for disaster.

Give Me a Simple Life

simplicity - serenity 

The past few days has found me with very mixed emotions for no apparent reason, and the draining feeling had me struggling to get motivated, so I went with the flow and just chilled doing minimal tidying and cleaning as I wandered around the house like a lost lamb.

I really don't know where my emotions are at, as though I could easily burst into tears for no reason, with my head in a fog, struggling to get my thoughts together, with everything I say and do seeming to go wrong.

some days are just better fast-forwarding.....

Today has been one of those days that we would rather fast forward and then say I'm glad that's over......

Sometimes I wonder how things can become so crappy.

Facing a day of one bad thing after another I ask "Did I do something wrong?" ...surely not!

I woke today in such a bubbly mood hopeful of all the things I could achieve and more.

With A.J. in his holiday mode I had allowed him the pleasure of sleeping in, which was also a benefit for me, being able to enjoy the silence and calm.

Appreciating the Good things in Life.

acknowledging the facebook page FATMUMSLIM for the picture

While scrolling through my Facebook news-feed I came across a post from my Niece with a pic showing an appropriate challenge that I just couldn't refuse to join in with it on my personal page. This was the pic connected with it.....

As this had shown up on 3rd of January I had a few pictures to post and catch up to date.

-1st photo...  black and white...I posted of course our cute little furbaby Laura

-2nd... What i did today...  was one I took on that day of A.J. blurred out as I had tried to sneak a pic of him in bed playing his PlayStation, although he wasn't in the pic-taking-mood so he jumped out to the other side of his bed, thus the result 

-3rd... Water...  the inside of my washing machine that although did not contain water at that moment, still requires water to activate.

This left me the rest of the month to create some life altering memories, or at least the reality of our life that is. 

New Beginnings

Xmas morning with A.J. and Laura 

2015 is at an end, and 2016 is preparing to begin.

Our Christmas and New Year celebrations have begun to subside and we find ourselves happily in chill-out mode taking a well deserved break to breath in the true holiday mode.

Taking advantage of the harmony I try to set out my sewing items in the hopes of gaining some creativity as I see both my men headed to their peaceful zones and technology, with Sony PlayStation games.

Our little fur-baby Laura has also settled in well, although still feels that we are at her disposal to entertain her every waking minute.

Unfortunately A.J. has had such an overload of input and sensory stimulation during the past few weeks that the result has been a 'crash and burn' meltdown mode and nothing we do seems to help him.