I love a lot of things about North Carolina. The climate,
the greenery, the people, and the slower pace of life are just a few of the
things I love about it. The problem with North Carolina (for our family) is
that it doesn't provide the kinds of support that our family needs, and our
families are noticeably absent. For these reasons, we've decided to return to
the Arizona desert (ugh). I have always
hated the desert, but I'm setting my wants aside for my kids.
Autism is at the forefront of my mind ALL the time. It
influences almost every decision I make, from what to make for dinner to where
we should live. I have to be conscious of my children's needs in everything we
do. Most families don't have to think twice about going out for a fun family
dinner, or a picnic at the park, or driving by Wal-mart. They don't have to
worry about their child melting down over some mysterious thing and causing damage
to people or property. But we do. I love my boys more than my own life, which
is why I'm willing to make whatever sacrifices I have to for their benefit, but
I can't help but imagine sometimes how different our lives would be without the
autism.
The world is becoming more aware of autism, because autism
is filling the world. 1 in 68 children in the U.S. is on the autism spectrum!
Almost everywhere I go, if I say, "My children are autistic." I will
be answered with, "Oh, my so-and-so's son is autistic." It's
everywhere. Yet, I have to move my family across the country to access better
benefits for my autistic children. My husband has to find a different job and I
will have to put on my helmet and shoulder pads and go toe to toe with a lot of
bureaucratic nonsense just to get my children what they need.
Each of the last four years we have spent in North Carolina
has gotten increasingly more difficult, with the worst of the worst in the past
6 months. We finally said, "Something's got to change, and since we can't
change the autism, we'll have to change our circumstances and ourselves."
We can't be selfish anymore. I wish we could stay in NC, but things have gotten
progressively worse for us the harder we have tried to hang on to what we want.
We are going to have to set aside our dreams and make new ones. When Braden was
first diagnosed, we had to let go of our dreams for him and make new ones (like
talking, and making a friend someday). We just didn't realize that we would
have to let go of our dreams for
ourselves too, but we are coming to find that out the hard way.
Gloria Steinem said, "Without leaps of the imagination,
or dreaming, we lose the excitement of possibilities. Dreaming, after all, is a
form of planning."
Everyone has dreams of what their life will be like and what
they hope to accomplish. I would love to live in the countryside, build a
homestead, and be paid to write. I used to dream about having a big family and
lots of grandchildren, but those dreams changed, along with everything else in
my life, when I found out my child had autism. You would think that I would
give up on dreaming, but it's human nature to dream and imagine our world is
better than it is. Without that, we would wither miserably and no progress
would be made. So, I'm not going to give up on dreaming; I'm just going to have
to find a new dream for now. Maybe someday we can pick up these dreams, dust
them off, and try again, but for now, we are going to have to let it go.
