Autism parenting has its good sides and precious moments but let’s
face it, most of the time it’s a hard work. We have to be on guard
24/7 – at least in our case (mild end of spectrum supposedly).
Our
supervising therapist suggested a support (psychotherapy) sessions for us –
parents, as from experience he knows that Autism affects not only a person on
the spectrum but the whole family. We have days when we feel like we can
overcome any obstacle and feel positive about the future of our precious boy but
other times, when he does everything he can to change our minds, we feel
discouraged and fearful… Why is that? I know kids on so called high functioning
end of the spectrum (Asperger’s and other “genius” syndrome) can pretty much
give you (parents, guardians, teachers) some room to rest, as long as they have
a pre-scheduled plan of tasks to do. In Mikey’s case we have to “entertain” him
constantly seems like… OK, I am exaggerating.
He is pretty good with electronic
gadgets (iPhone, Kindle, laptop – shame you cannot hear my laughter now… Do you
remember my previous post? Then you understand. By the way, iPhone rested for 2
days and got its life back – miracles still happen). He can stay focused on one
game or going through his playlist of favorite songs and videos and we get
20-30 minutes of free time, if we’re lucky. He used to love drawing and could
spend hours just doing that… He still draws occasionally but no longer than 10
minutes at one go. So what does he do? If you’re an Autism Parent yourself, you
can pretty much guess and empathize. But this blog is not only for us but also
to make people aware of what Autism looks like behind the closed doors, day by
day…
Michael is a
never ending source of energy. He can run a marathon, sky dive, swim across the
lake and back, come to have a quick snack and drink on the go and get right back
into his bizarre chase. He constantly tries to climb things (stairwell,
cupboards, fences, windows – that’s why we installed bars all over the house
windows). We don’t want to be overprotective or too paranoid but we cannot just
sit on the couch and enjoy a quiet evening, watching a movie or listening to
some good opera… When we do, he may end up on top of the fridge or on the Moon
itself, eating things he’s not supposed to – like medicine, wax candles or
something even more extreme. Therefore we try to take turns in taking him down,
calming him down etc. It’s even harder now, when we have to raise his baby
sister too. She’s going to be 3 in a few months and demands our attention as
well. Frustration increases as the problems in other areas arise simultaneously
– stress at work, global crisis, obligations and commitments – AHHHHHH!!! So
what do we do? We cannot change the circumstances – Autism is a lifelong
condition that through solid therapy program may teach a person on the spectrum
to function in our society just like others and be independent in the future. We
fully believe this will be the case with Michael but what about now? How many
more years it’s going to be a 24/7 job?
I
know my words sound bitter and maybe even sarcastic but I just
wanted to bring a full picture first before I get to the point.
Autism
parenting is definitely a full time job. It takes sacrifices, it steals “me”
time and it can easily overtake our life. Everything we do, we plan and we think
seems to be focused around big “A”. Poor us, right? Let me tell you how I see
it. Again, I am going to bring God into this equation… Humor me for a moment
and just imagine God being an Autism Parent/ Grandparent/ Guardian and you being
a kid on the spectrum. You know He made you in His own image (just like our kids
are often pure copy of us). He rejoiced when you made your first steps, when you
said your first word etc… just like you were ecstatic when your child was
leaping through milestones. OK and now we come to the core. God has His way to
keep us in line and closer to Him once we become His children. Yet His love
never ends, nor does His patience (wish I was more like Him). We do the most
stupid and idiotic things, don’t we? You know that you get mad, dramatic, pouty
etc. when something goes wrong or you don’t get your way. You blame the boss for
being unsympathetic to your personal life circumstances; you blame your family
and friends for not always understanding what you’re going through, even a poor
postman for delivering more bills instead of encouraging letters or dogs for
barking and not meowing. You know what the problem is here? The “Me” factor. If
you stop and smell the roses you may actually see what an Au-some God we have.
Thank the Lord He is not a parent to us as we are to our kids on the spectrum.
Check this out, in Jonah 4:2 we have great description of God’s attributes:
gracious, merciful, slow to anger, of great kindness… When you study the whole
book of Jonah you will see what I mean by God’s parenting and unbelievable love
for a difficult child, a rebel who runs away, covers his ears when being asked
to do a task and finally getting pouty and angry with God because He did not
react to his dramatic performance (Jonah said he’d rather be dead for not
getting his way, than to live and see God sparing his enemies). And what do we
do when our kid acts more like a monkey on the loose than a little well groomed
boy who reads Tolstoy to sleep and plays Mozart recital on the weekends? Well… I
know most of Autism parents who go to work and deal with stress there, come home
and deal with a different kind of madness, tend to be a little less gracious and
slow to anger, hahaha. Am I describing you too? I know though that patience and
love work a lot better than losing temper and reacting to a naughty behavior
(by screaming, pouting, being melodramatic etc). Michael responds to love and
calmness by showing his love back and being more affectionate.
Sure there will
be days when he’ll drive us all crazy but I see more light at the end of this
tunnel. The way he holds my face and puts his cheek to mine, the way he cuddles
with his daddy, like a little cub on a lion king or that huge smile when his
baby sister is chasing him around our dining table… I know there is God; and He
IS good!
Summing up,
Autism is nobody’s first choice but we were given an opportunity to practice
God’s attributes while raising our monkeys on the loose. One step at a time… One
day we’ll get there! God bless you
“Jonah”…
“Jonah”…
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