I recently heard the argument “why would our God want to
give a child a disability like this?” in reference to the many who say things
like “God doesn’t give us more than we can handle” and “God needed to place
another child with Autism on this planet so he chose me” and an apparent
favorite “it is a gift from God.” I have
to say, I kind of agree.
Before anyone fries me for that let me continue. Everyone is welcome on my page regardless of
your religion and I have no intentions of taking any kind of religious
platform. This is merely my thoughts on
my views and the argument that was presented.
To also make this clear: I LOVE my son. He is my whole world. My rock,
my angel, my beating heart. I would not trade him for anything. He is
and always will be the best thing to
have ever happened to me. He really is
God’s greatest gift to me.
That said...
It has been my mantra for a while what everyone else has
been convincing themselves of. I guess
it makes us feel a little better to sit back and tell ourselves that this
mysterious God wouldn’t give us more than we can handle. I have to say, those moments definitely exist
where we REALLY need something to help us get through the ugly. It can make things a little easier to deal
with.
But when you think about it, why on earth would God give
people disabilities?? Especially some
that are on the extreme end? The
argument was made by a dad who has a child with severe Autism. You can read about it HERE. Severe as in
nonverbal, headbanging, low functioning, mentality of an 18 month old, and the
child is 9. He and I do come from different worlds of Autism. Still, he makes a valid point. He was raised
Catholic, but is no longer a practicing one.
He makes the argument regardless of one’s religion saying he doesn’t see
how a god could possibly want to give someone this life of total disability. Now he does view his son as a gift, as we all
definitely do. My son truly IS a gift to
me, the BEST. But Autism as a gift? I agree, let’s give it back.
I do not wish to have a “gift” that is so “fantastic” that
it separates my son from other kids. I
suppose it wouldn’t be so bad if he was completely oblivious to it, but he’s not. He
knows he’s different. He knows he isn’t like other kids his
age. He
honestly thinks there is something wrong with him and is always, ALWAYS, asking to be “fixed”. He tells me all the time that he needs a new
brain... Would God want to make a child
that miserable? Where he asks all the
time to be “fixed” and since there is no fix for him reverts to how he needs to
just die?
I envy Autism Daddy,
because his son is truly completely and totally oblivious to anything around
him. He doesn’t know he has severe
Autism and is different from his peers.
He and his wife never have to sit and hear their child ask to be fixed,
or get notes written or hear their son say their two choices are to run away or
die because he knows he’s a hassle and is different and can’t control himself. Hell, I envy the fact that there are TWO of
them at home being able to deal with their everyday reality.
I see people having conversations with children younger than
mine and I envy them that. In fact, it
HURTS. I still can’t have a conversation
with my child. He’s 9 years old. Sure,
he’s verbal, very much so. But he can’t
carry on a conversation. Hell, 80% of the time you can’t even figure out what
the heck he’s saying! We both often get
so frustrated we end up crying and upset and completely give up. He can’t communicate well enough.
For those who want to sit on your little high horse and go “well
why doesn’t he learn” or “why don’t you teach him?” Let me ask you something: does your 1 year old child ask for a cup
simply because you will them to? Does
your 6 month old walk simply because you tell him he needs to figure it
out? No.
No they don’t. Life doesn’t work
that way. Years of speech therapy,
behavioral therapy, and just plain therapy have not been effective in some
areas (and we are ALWAYS trying new approaches).
My other peeve are the people who tell me, “I don’t know how
you do it. I could never do it.”
Please. I’m no saint. I’m just a mom. Doing what anyone would do for their
child. I do what I can the best that I
can. I’ve endured years of BSCs, TSSs,
and therapists invading my home in addition to psychologists and neurologists with
no end in sight. I’m not perfect. I yell at him for things when I know he can’t
help what he’s doing. I curse. I cry. Getting
him ready in the morning or even just for a trip to the store is a nightmare...
I’m sure there are times when I could engage him more, do
more. But so many days I am just so
exhausted that I just want to sit. So he
goes, left to his own means. He may
spend a little too much time on the computer.
He may be left to completely destroy my room/his room/the living room
while I zone out staring off into space, just looking for even just 10 minutes
of peace. My day is so full of “Mom! Babble...”
“Mom! Babble...” “Mom! Babble....” that even 2 minutes of silence is absolute
heaven.
And yes, I look forward to bedtime every night. The only time of day when I can actually get
anything done and be somewhat productive.
People joke about their pets or their toddlers interrupting them while
in the bathroom on the rare occasion it actually happens. Guess what.
That is my reality. That is my
every day. I can not go to the bathroom
or shower without seeing the bright bubbly face of my son through the door or
shower curtain (he hasn’t figured out modesty yet).
Let’s not forget that when he is at school/daycare my
anxious wait or nervous checks at caller ID when the phone rings, just
waiting
for that phone call or written behavior report of what he did “wrong”
that
day. His reactions and responses just
don’t fit in the typical world. It’s
heartbreaking. He doesn’t know how to
respond. He just reacts. Often, it does get him into trouble. The
worst part is, he tries so hard... So hard... To be good. To control
himself. At least his peers are understanding and
forgiving...
To make it better, we are venturing into the world of
adolescence. Yep, puberty. So we are not only getting into the smell
to
go with the refusal of bathing, but the sassy back talks and lip that
would
rival a 16 year old girl. At least once
a day he threatens me. At least. He is also getting increasingly
violent. Choking, hitting, biting, sucker punching.... Hormones are a
wonderful thing. Let’s throw Autism, ADHD and all its fun and
impulsivity, and the beginnings of puberty in one bucket and shake it
up.
That’s a gift from God?
In the end all I’m left to do is cuddle with him every night
(and randomly throughout the day), talk with him, and tell him how much I love
him and how proud I am of him, always reminding him that it’s the behavior I
don’t like not him. (With lots of hugs and kisses.)
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