Isolation of the autism parent is a topic that came up today
on facebook and yesterday I actually did sit down to write about this with a
blank mind. Today I decided this is a very important topic so others can
understand, at least in our case, why we tend to isolate. I have grown used to
being somewhat isolated at home but that doesn’t mean I enjoy it day in and day
out.
When I
am invited somewhere I tend to ask myself three questions. Is the situation
something Phillip can tolerate even for a bit? Will there be a large crowd and is
there an escape route? Meaning if Phillip begins a meltdown can I remove him
from what has overwhelmed him quickly because once he is all in, I have no
power to help him. I suppose I could skip thinking about these things and just
jump in and see what happens but there has been so many times we have ended up
in a public place completely overwhelmed and no way to escape, with an audience
building. That is a very difficult place to be and we avoid it if we can. Unfortunately
avoiding it does lead to isolation.
I think
many people understand this element of raising an autistic child and public outings
but then there are the times I get invited to go somewhere and I would have to
leave Phillip with someone else. I can do that for a short time but overnight
is out of the question. Last night a trip to New Zealand came up and I was
invited. Only a crazy person would decline an invitation like that but I had no
choice but to say no.
The
routine for my son is important and yes the routine changes. We just moved very
far from what he knew and he has adjusted well but there has also been a key
element in the move that stayed the same….me. For the most part I can read his
physical cues so meeting his needs is not impossible but this has come with
being with him every day. Sometimes even family members who are around him all
the time have a difficult time and honestly I can’t say I always know what he
wants. No matter how many changes were to come his way having the routine of me
there with him, even during hard times, helps to ease him and get back on
track. If I were to take off for a vacation or overnight adventure his line of
communication and routine is broken. The impact is not one I want to discover
at this point in his life. This can be viewed as paranoid or coddling my son or
even a lack of trust in who could care for him but it is none of those things.
I trust
every person in my life to care for my son and know he would be safe and loved,
but at the same time there is a processing limit he has. I can see the signals
that he is reaching that limit and know when it’s time to go and get back to the
isolation we have grown used to. His routine is not something I could write
instructions for and take off because many things are signals and processing elements
tossed in with lack of communication and the simple fact of being a strong
willed three year old.
That
being said, it would be cruel to take off for a New Zealand adventure just
because I want to. Cruel to him and cruel to the brave soul who stepped up to care
for him because the routine is not just a dictated order, it’s a daily connection
with each other. This connection is one reason I shake my head every time I
hear someone say autism doesn’t build emotional connections. I can say from
three years of daily interaction my son’s emotional connection and attachment is
so strong it’s nearly impossible to put into words others can understand.
For
those who invite an autism parent somewhere and they decline or leave early it
may be a bit more complicated than it appears to be and for those who have had
to decline or leave early, the adventures will come. For now try to remember
the ability to understand your child like no other is an adventure beyond words
that many people wouldn’t have the bravery to jump into with love and grace.
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