I was sitting today and thinking, how far the boys
have come from the beginning of our journey.... I look back to that first day
when Evan was 17 months old and I woke up to him having a seizure. I woke up to
the beginning of a nightmare that I didn't know how to handle. I thought about
his second seizure just twenty days later that went on for over ten minutes in
the ambulance. The paramedics were not sure if he lost oxygen. I thought about
how I couldn't get into the hospital room while they were working on my little
boy that was just laying there still. I didn't know if he would wake up or what
was causing my angel to have seizures. I waiting outside his room and then felt
relief when the nurse told me I could go in. He lay there like he was sleeping.
Tubes and wires were everywhere on him. I didn't know what the doctors were
about to tell me. He made no noises or moved around. There was just silence and
everything was completely still. I remember how I wanted to pick up my angel
and hold him. When the nurse looked at me and asked, "do you want to hold
him?" I of course jumped up and said, "YES please!". She came
over to the other side of bed and said, "let me help you" I thought,
I can pick him up on my own, then thought she meant with all the tubes. But no
what she meant was help pick him up. He had no muscle tone what so ever. It was
like picking up a rag doll. I had no words for what I was thinking of feeling
at that moment. The tears just poured down my face as I held my angel in my
arms. I kept saying, "it's okay, Mommy is here and she loves you. Please
wake up baby, please wake up." They would take my son to get multiple
tests and scans and no I wasn't allowed to go with him because I was pregnant
with our second son at the time. I would spend the next year and half watching
him regress and no matter what I did, I couldn't stop it. No more words. Only
screams and scratching, kicking and biting. The night terrors were a nightmare.
We couldn't have anyone come over to visit us, he would just scream and run and
hide underneath his bed. He wouldn't stop screaming until they left. We
couldn't go out in public; he would lose it in the stores. I felt helpless and
lost. I would also live in fear that my second son would also begin to display
these same symptoms. I feared another seizure would happen. Something I assure
you don't want to ever see your child go through.
Once we were finally referred to a specialist and
found out he had Autism. Our first thoughts.... What is Autism? We would soon go
home and research Autism. And cried our eyes out because none of the
information that we found seemed good. The ideas that we had for our child,
were now gone. We sort of felt like we were mourning the loss of our child. I
cried for several days. I asked why my child. He didn't deserve this. He is so
innocent. It's not fair!
Then one morning, I looked at my son, and decided
that enough was enough. I wasn't helping him by sitting in the house and crying
my eyes out. I had to get up and get him help. What ever needed to be done, it
would happen. I would make sure that it would happen. The reality of how
expensive that help would be would hit home very quickly. And understand that
we couldn't afford that help that our son so desperately needed. We just didn't
know what to do.
We soon began our Autism journey, for both of our
sons' it would turn out. IEP's, OT, Speech therapy, Neurologists,
Psychologists. So much of our lives became about getting the kids the help that
the needed. The hell that we lived in, and we felt that no one understood. I
can't tell you how many times we heard the "they don't look like they have
Autism." I still would love for someone to show me what Autism
"looks" like. Actually I know what it looks like. Both of my kids.
All the kids and adults with Autism, that's what it looks like. I heard, don't
use their Autism as an excuse for their behavior. Of course this would come
from those who knew nothing about Autism. I would soon stop talking to most if
not all of my former friends. They just didn't understand nor would they ever
understand.
This journey, we are all on it, and I have seen such improvement, achievements
by both of our boys. I am one very proud mother of the both of them. They are
my heroes. They are the reason I am becoming a teacher. I love them with all my
heart. I know that it's so scary when you first get the diagnosis. All I can
say is never give up hope! Never give up on your child. I have learned that
they will teach me so much more than I thought I could learn.