Recently I had to bring my son in to have his testing done
again. (testing for autism) As he and I sat chatting in the waiting room I
noticed a mom in the waiting room with a very young son. She was filling out piles
and piles of papers and had notebooks which I am sure were full of questions. She
hardly looked up when we walked in she was so focused. Her son though he
noticed us, staring at us he yelled “Mom, I don’t like those people
and I don’t want them to look at me.” He
definitely said it loud enough for us to hear. I knew in a moment he was
having similar testing done too. She had a look of
determination on her face and a hint of fear in her eyes. I knew that look all
too well. Sitting there I remembered like yesterday what it was like to sit in
that chair, filling out evaluations, over-analyzing each question and reviewing
my own list of questions and demands. I wanted so badly to hug her tight and
tell her what I knew. But that would have been awkward and weird, even for me.
It did however make me think about what I would tell my pre-autism self. There are
so many things I wish someone would have told me. Below is just a few of the things that would have been helpful to know.
Dear Pre-Autism Self,
I know right now life feels out of control and hard to
understand. So…
Take a deep breath. Do this
often. Pray.
A lot.
Feel what you feel.
Feel relief if you are relieved. If you need to laugh, laugh. Do not for a
minute feel guilty for feeling what you feel. It is okay to feel angry, to feel
frustrated, to feel betrayed. Let tears fall as they may. If you feel as though
you have experienced a loss give yourself permission to grieve. Just do not
live there too long. For if you do you will miss so much joy and beauty. You will
never find out how strong you are and how good
God is. There are so many gifts in the journey, you don’t want to overlook
them.
Do not be afraid of
the label. Do not let the word autism hold you or your son back. Do not let
it put limits on or define him. In the same sense do not be afraid to talk
about it with him. He will adapt to your definition of autism. (He hasn’t seen Rain Man) If you act like
autism is limiting and tragic he will believe he is incomplete and a mistake.
If you teach him he is loved and has purpose, he will believe you.
Do not fear autism.
Right now you think it is a life sentence but it is not. It will make things hard
at times and honestly there will be moments you did not know your heart could
hurt so much but in those same moments you will experience joy in the pain,
strength in the adversity. You will advocate, you will educate, you will
negotiate. You will be wrong. You will
make mistakes. You will try things and they won’t work but don’t let it stop
you. Keep trying because one day it will work. And on that day, it will all me
worth it.
Rely on your support
system. Be real and let others help when you need it. That is not a sign of
weakness but of strength. People are going to have a lot of opinions. I mean A.
LOT. Listen. Remember most often people mean well. For those who don’t? Ignore
them. Avoid the haters and cling to those who love you. You will meet so many
amazing people who are on a similar journey as you, EMBRACE them. They will
become your army, your family, your people.
You are not his parent
on accident. It was planned. You were picked for him. He for you. Despite
this you will feel ill equipped. Do not let that get you down. There will be
times when you are not enough but there will never be a time when you and God
are not enough. He will give you just what you need when you need it.
Love deeply. Live
Fully. Enjoy the moment (even the hard ones). Hold on it is going to be an
amazing ride!
You can do this!
Lisa
P.S. Your son is pretty much a rock star. He is caring and
kind, full of compassion and a great sense of humor. And when a little kid
makes it clear he does not want anyone to look at him in the doctor’s office,
Ben will purposefully find a seat on the other side of the room and quietly
whisper “Don’t take it personally mom he is probably just having a bad day.”
