I woke up this morning with a genuine excitement about the
day ahead. Today we are going on an adventure with friends.
My girlfriend and I had planned a trip to Melbourne to see
the GUT FEELING expo currently on at the Melbourne Museum. Before I left the
house I tried to make sure I had thought of everything, you know the usual
drinks, snacks, every kid has shoes on and we have an asthma pump on hand.
I also had to think about what could go wrong in our day, so
what am I going to need when out and about. We have some great tools in our box for alleviating
some of the challenges that might pop up e.g fidget toys for those moments the
kids struggle to sit still when expected, bubbles to encourage better breathing
to calm the racing heart (excitement or nerves) just to name a few.
Because it takes me asking the kids a bazillion times “have
you got your shoes on?” “Have you filled your drink bottle?” the list goes on,
I was starting to feel frustrated and in the yellow/red zone so I turn off
the TV to help get their attention and then repeat or maybe yell the words “boys use your whole
body to listen” (currently a big part of our therapy and will be for years to
come. *insert eye roll here
Most people will be reading this and think this is something
that happens to them with there children too but if you have a child on the
spectrum it’s ramped up to 11.
We finally get out of the house and head to
the train station to meet our friends.
The train ride went relatively smoothly but towards the end
I had to swap seats with Orlando as he was becoming over stimulated and
disruptive on the train.
Next was the tram ride WOW thank goodness we don’t do that
often I felt like id been jammed into a sardine can but the kids all handled it
really well and actually thought it was quite fun.
We arrived all excited to the Museum and mapped out a plan
of what was going to work and planned this with the kids. At different times we
hit challenges but with tools under our belt we went without a meltdown. My
girlfriend even taught us a new strategy to count e.g how long do you think it
will take mum to come back with your food? You count and we will see how long. *insert
squeeze hug for my awesome girlfriend. I have seen other people do this with
their kids and never thought it would work with Orlando.
After lunch we hit the Gut feeling show that is currently
running over the holidays. The kids got to meet two ladies dressed up as bacteria
and enter a huge mouth which travelled the journey throughout their home- the
stomach, small and large intestine and out as poop when flushed into the
toilet. I bet you can guess the kids favourite part of the journey LOL
It was a really fun day.
Behind the curtain...…...
What I haven’t told you in this story so far is that although it
was an awesome day there was a lot of other things going on. I had anxiety when
the staff from the gut feeling show asked us if we had our tickets, Um pardon?
Not Museum entry tickets but gut feeling show tickets. They then explained the
show was sold out.
Even though the lady at the desk sold us Museum entry tickets
and told us the show times she hadn’t explained we needed to purchase extra tickets
to see the show. What do we do now? Our kids are dressed up as bacteria and
ready to enter the mouth? Luckily after some stern words the staff where great
and the kids happily went on their journey.
It was like the universe new I was on a break and my phone
rang. It was a company we had terminated services with due to lack of
performance a month ago, apparently one of their staff was at my front door for
an appointment and they wanted to know where I was. It didn’t help that no one
had made the appointment with me, I didn’t even know who this person was? I
have had multiple conversations with this company as has our support
co-ordinator and they just keep calling to ask what’s going on and we just tell
them the same story over and over. Such bad communication in the organisation.
The next hurdle during our break was an email I had been
waiting for about a stuff up by one of our service providers. I won’t go into
it because its long and boring but they had taken money from the wrong line
item in our budget and we have no more therapy money due to the stuff up. This
has been an ongoing issue for months that they have tried to blame me for. The
pressure is on because we have our NDIS review in 2 days.
Its clearly hard enough to navigate being a mother of autistic
children without the stress of people not doing there job properly. I
completely understand no one is perfect but I’m really struggling with these circumstances.
How do other people with much bigger issues cope?
How was your first day of school holidays?
Are you or someone you know having similar problems with service
providers?
Please share your experience with me.
Thanks for reading
Jess x
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