Reflections

preparing for the new year ahead.....

Before you read the post below, I want to make it perfectly clear-

I am NOT complaining, I am NOT feeling sorry for myself, I love my family - warts and all.

I am just stating a fact the way it is - NO MORE-NO LESS

I've never shared our story to sugar-coat the big picture, I have always stated what we face straight up as we live it, as anyone in the same situation will agree with what we are dealing with.

Although we continually go through these experiences wondering when will it all end, we also have light-at-the-end-of-the-tunnel moments to hopefully even it all out.

We may suddenly see the reality of how our life is playing a continual loop of repetitious mundane events all due to the situations we are facing.

Addressing the day-to-day grind with our grandson's ASD, anxiety, and other issues, as well as my husband's PTSD and medical issues.

While we are finally accessing supports for A.J.'s diagnosis and slowly gaining headway there.

My husband's story is a totally different scenario.

These 'silent/invisible illnesses'

- we hear many say it doesn't really exist, or they can't fathom the severity of the situation we are facing.

** "But they look so normal."

** "He makes eye contact."

** "He communicates."

** "But he is still able to function day-to-day."

** "He's fine, so what are you complaining about."

The list of demeaning comments and innuendos used to belittle our real experiences can come from many different sectors, sometimes closer to home than we like to admit.

   

The emotional toll we as parents and carers face dealing with other people's negativity can be more draining than managing the family situation in itself.

We want to scream - YES it is because of the weeks-months-years of therapy and other interventions and we still have so much further to go.

So here we are 2 weeks into our xmas/new year school holiday break, with 4 weeks to go.

To say it is just another day in our household is an understatement.

Sometimes I wonder if I am actually functioning at all.

A.J.'s emotional levels are peaking at over-drive, with every day being "boring and tedious" and yet while trying to suggest or arrange something new and exciting, his response, triggered from his social anxiety, finds him withdrawing further with-in himself and refusing to leave his room.

As for my husband, he isn't far behind him, as he stresses about the 'what-ifs' and safety aspect of everything we plan to do, and resolves to - "put it off for another day, when I'm feeling better"

So day after day and week after week I see our social life and lifestyle slowly disappear and diminish into nothing more than a hopeful dream.

No-one sees this side of their disability, no-one sees the struggle they cope with just to get out of bed to face each day. No-one understands the feeling I face while making yet another excuse as to why we didn't make the family BBQ or the party our friends were planning.

Then year after year our list of friends and extended family begins to shrink as it is easier not to ask, as they know the answer is always "Sorry - not this time"

It hurts inside to see them all drift away, but what are we to do??

These are the stories and situations the external world doesn't see.

These are the reality moments we face regardless of how we try to work things out.

So how do they think we can 'fix this'?