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.

Over the past few months we have had so much going on, a continual flow of appointments, therapies, sessions of some form or another, in some cases for the first time, linking with O.T.'s, Speech Therapy, Physiotherapy, Psychologist, finally we are gaining the right links at the school level to find the 'first steps' to a forward direction.

All these that have been unreachable till now for many reasons.

Just when I can see a little light at the end of a long dark tunnel, we are having the 'protective rug' being ripped out from under us.

Within only 4 years we have had to repeatedly justify why we should retain the official acknowledgement that A.J. is still qualifying for disability support. Why do we have to justify that Autism is a 'lifelong' diagnosis, that his symptoms and struggles don't just suddenly disappear. That although he may have "Good Days" he still has other days when everything has fallen in a heap and he can hardly manage to get out of bed.

With each new set of forms being sent to us, we have to make appointments at a 'minutes notice' with specialists that know his history to fill out the forms to state the obvious......

A.J. has...

Autism Spectrum Disorder DSM-V level 2

ADHD - combined

Anxiety Disorder - generalised

                               - social

Sensory Processing Disorder

Developmental Trauma

Expressive and Receptive Language Disorder

 with additional medical issues of Visual and Spinal Scoliosis

.....all of which need continual, repetitive, on-going supports to allow him to function at anywhere near a standard level.

Although if we miss out stating on these so-called reports... something 'they' personally think is required to be noted, although not covered in their long line of information-limited question listing, covering something more than the official 'Medical Diagnosis', we mere mortals are then cut off access to all required assistance and funding support.

Those same supports and funding required for the long list of medical and prescription needs, some very expensive items not on the PBS listings, the costly petrol and other expenses required to attend the long list of medical and support service appointments and therapy treatments, mostly due to the distance we are having to travel to source these services, being only available outside our remote area we live in.

Why are we penalised for trying to help our child to better understand his symptoms, and help him to live each day, just a little better, or more-so learning how to live each day with his disability, coping with the symptoms or shadowing and hiding how they are really affecting him day in and day out.

All this to appease other so-call bureaucrats that don't want to be exposed to what our loved-ones are faced with each and every day, the symptoms too horrid to be seen by them, so they feel it better to be hidden, to their belief of an out-of-sight-out-of-mind mentality.

How dare they disable him further by cutting off the only supports he needs to actually get through the day with some form of dignity held in tack.

After handing in this years long list of forms, I received another list, asking to re-do the questions, as they felt the original forms handed in didn't qualify A.J. to continue gaining the supports.

Even with the official diagnosis meeting their criteria. Yet, technically their questions don't allowing us to answer completely the correct level of supports we are required to supply, to truly give a complete and full picture of how we fill each and every day.

  

I am but a mere person, like everyone else, trying to provide the best of anything that my family requires,

lovingly giving of our time and resources to allow our kids access to the best quality of life they deserve regardless.

I am not out asking for anything more than what we are entitled to.

After my husband and I have spent most of our own lives working hard, providing anything and everything for our own 3 children, with what we had.

Then when needed, after fighting with every breath we possess, to gain custody of our beautiful grandson, providing him with the safe and happy environment, and more, he so deserves. Giving up everything to provide all A.J. needed, covering health and social issues as they arose. I left work and more to dedicate 100% to support his needs, this, long before we learnt of his diagnosis. For over 8 years never being informed of the supports we were entitled to source and never given access to.

So why now we are finally starting to gain a little progress, do they want to take it away.

YES... it is working, but NO... he can't continue without it.

I am at a loss, I wait on tender hooks, hoping upon hope, wishing and praying with every ounce of my being that they will approve this inclusion so we can continue with his progress.