Our kids can take a lot of management, for a lack of a
better term. We have to manage their schedules, their food, their environment.
There are doctor’s appointments, case managers, therapy appointments,
pharmacies, teachers, insurance companies, almost an endless list of people we
need to call or email each day. In my experience so far, one parent (or the parent if you are the only one)
becomes responsible for managing this chaos. Each family finds their own way.
Sometimes one parent works, sometimes both parents work. The money it takes for
all of this, even with state assistance, is staggering.
What this all brings is guilt. Mommy guilt, daddy guilt,
guardian guilt. There is only so much time in a day, and there are things that
HAVE to be done. The laundry, the groceries, or even working to survive. There is no
way we can exist without doing these vital things, but taking any time away
from your children can make you feel horrible.
You can be a stay at home mom, who rarely gets to spend any time with
any of your kids. You could be the working parent whose son tells his class
Dad’s favorite thing to do is work. There is no easy answer. I’m not writing
this to try and give you one right now. What I want to do is figure out a way
to make this unavoidable guilt a little easier for you to bear.
You know, they always say our kids are so different and when
you meet one person with autism you’ve met one person with autism. This may be
true, but there are SO MANY similar things that we all experience in these
uncharted waters. We tend to hold everything in thinking no one can understand
what we’re dealing with.
First, I want to tell you that you are not
alone. Recently another autism mom started telling
me about how she felt so guilty because the time she should be spending with
her youngest she had to use to make these necessary calls and arrangements. The
things she was saying could have been coming from my own mouth. Then I heard it
again from another mom. A father mentioned how he feels guilt when after
working a long week to support his family or working that extra side job to
save money for something crucial to his child’s well being, he needs to take
time for himself, to keep his head grounded. It doesn’t matter what type of
parent you are, you are always going to feel like you’re not doing enough. It
is the nature of loving your child to want the absolute best for them.
Next, I want you to know that there ARE people
They may not be right next door. They may be someone you see in a waiting room,
or talk to online. It doesn’t matter who or where they are. What matters is you
share the load of guilt you’re feeling. You share the ridiculous nature of the
life we lead. Find. Your. Village. If you can’t find one? Come find me.
On that note, I can’t
help myself but mention this- If someone
shares with you? Be supportive. Take the time to listen when someone opens up.
You may be the first one they’ve told. DO NOT BE JUDGMENTAL. Our life is not a
competition. We are all just trying to get by, one day at a time. There are far
too many divisions in these communities that only serve to give more guilt and
Lastly, if you find a
way to handle this guilt, please share it with the rest of us. We can all
use another method of finding sanity.