I originally wrote this in March of 2014. My "about
me" post/area whatever that I previously had on the main blog page was a
pain in the @$$ to edit, and to find, so I decided to scrap that and put it in
a blog post instead. I probably wasn't doing it right in the first place
anyway. I really didn't edit it much here except to add Rachel's name to some
areas because I wrote this before she was diagnosed and while we were still in
denial about her (shame shame!) I thought I would post this here so I can put a
link to it on the main page. (I'm teaching myself HTML
right now...so I guess if you got here by clicking on a link that said "about me" I successfully taught myself HTML...yay, I'm smart!)
Hi there. I am a 41 year old business owner and stay at home
mother of 4.
My oldest 2 daughters of the 4 came in to my life when I
married my husband nearly 10 years ago. I call them my daughters even though I
did not technically give birth to them because I love them as if they were my
own (a line that was even in our wedding vows) so if I talk about them in blog
posts and it's confusing because I'm calling them daughters, that's why. The
confusing part lies in the obvious DNA connection between autism and me and the
little ones and then people think why don't the older one's have autism???
yadda yadda yadda. Anyway...I also have an almost 3 year old daughter with
non-verbal autism, and a 5 year old son with severe non-verbal autism. They
also both have Sensory Processing Disorder (SPD) but on polar opposite ends
which gets interesting.
This blog started out as being just about Aaron because
Rachel hadn't been diagnosed yet, so the below part is mostly just about Aaron
(and me) although I have added "and Rachel" in parenthesis in various
spots.
I had 4 miscarriages before Aaron was born and while I was
pregnant with Aaron I went in to early labor and was on bedrest for the last 3
months of my pregnancy. I of course was emotionally attached to him while I was
pregnant but I tried my hardest to not become too attached. As each miscarriage
happened I became even more convinced that I couldn't have a successful pregnancy. I went from partially detached emotionally, to my miracle baby in my arms after 36 hours of labor on New
Years Day 2010. Once he was actually here the feelings of love that I felt for
him were overwhelming and still are. Frankly they scared the hell out of me. That's a
big rush of emotions all at once that I was not prepared for. Those feelings
blinded my whole family to the very obvious signs that Aaron had autism from
birth...but it doesn't make us love him any less. If anything we love him even
more.
Aaron is happy, he laughs all the time. He plays non stop
with cars, trucks and especially trains. He loves butterflies (but not in person, he will
freak out.) He loves to be tickled and give hugs and kisses. Mostly he loves
Special Agent Oso, Chuggington, Mickey Mouse Clubhouse and Lightning McQueen
(but not the movie.) I think he is the most special person on earth.
Before starting this blog I would post or share various
things about autism on my personal Facebook page along with my own two cents.
After sharing something one day a good friend told me she always liked what I
would write and share, and then asked me what the early signs of autism are.
This started what I believe to be the world's longest Facebook conversation in
which another good friend joined in. When all was said and done they both
suggested I start a blog. I had been wanting to start a blog for a while so I
decided to do it! The link below to the blog post I did for World Autism
Awareness Day, contains many "copy and paste" excerpts from that
conversation. I figured why type it all again when it's right there? It's long
but it's worth a read and gives a good look in to our world a bit (prior to
Rachel's diagnosis)...here's the link:
http://autismpants.blogspot.com/2014/04/i-am-making-you-aware-today-is-world.html
Many blogs and websites about autism are all about the
"feel good" stories. I think those are great, however, there are not
enough of the stories told that show our side, the severe side. When I posted
things on Facebook before my blog, I always felt like I had to post these feel
good things or people would think I was complaining about Aaron and I didn't
want anyone to misunderstand, so I only posted things that showed the real and sometimes darker
side (for lack of a better word) of autism from another's perspective (such as
the blogger Autism Daddy) and then said "I can relate."
We live in a very rural part of Wyoming, over an hour drive
from the nearest large"ish" city. There are very few autism resources
in Wyoming. If it weren't for the school there wouldn't be any at all. When
Aaron was diagnosed we were basically kicked out the door and left to our own
devices, no after care instructions, just a couple of book recommendations.
Everything I know about autism I have had to teach myself. No one has been
there for us, no autism therapies were offered to my son until he started at
the head start school and no autism therapies, treatments or doctors are within
hours of where we live - and when I say hours I mean hours and hours -
overnight stay in another city to see a doctor if we don't want to be home at 2
in the morning. I do everything in my power to help him but when you add in a 2
year old, (now also with non-verbal autism) it gets truly overwhelming at
times.
With this blog I get several things I've never had before, a
cathartic outlet, I can spread autism awareness to Aaron's end of the autism
spectrum, (which is desperately needed) and I can share with anyone who wants
to know, the amazing little boy that is my Aaron (and Rachel!!)
Keep in mind that if I ever use the word "they" to
describe those with autism, I don't mean in any way to say that this is 100% of
people with autism even on the severe end of the spectrum (I know in a very
real way that it isn't.) Everyone with autism is different, but what I have
learned about my son is that he is typical classic severe non-verbal autism and
I am trying to bring light to his world and his struggles. It is also important
to remember that I am not complaining about Aaron. I love Aaron more than
anything on earth. I see autism and Aaron as two separate things. I see Aaron's
specific type of autism as something that often hurts my child and I hate it.
If there were a cure I would be the first in line to take it away. I am venting
about what this type of autism does to my child.
Lastly, I am just a mother who is doing the best she can
under the circumstances. I am happily married so no, I am not doing this
entirely alone but we need money to survive and to pay for the things that our
children need that our insurance won't pay for because autism therapies are
"experimental" so my husband works at our business 6 days per week
and he works hard so I am with the kids the lions share of the time.
This very last part may sound blunt but I am Italian so I
can't help it...If you don't like something I write or my personal view on
something and if it is truly that upsetting to you, please feel free to read
another blog instead of attacking me. What I write is accurate to my feelings,
my experiences, my children and my family and until you walk a million miles in
my shoes you will never understand my family just as I could never understand
yours....or judge yours.
If you have any non-judmental questions/comments for me I
would love to read and respond to them! You can message me on Facebook or email
me at autismpants@gmail.com and I'll get back to you. :)
Thanks for reading!!