Saturday, March 29, 2014

Why I support Autism Speaks.

As we approach April 2nd, and the "Light It Up Blue" campaign from Autism Speaks I feel I need to share our story, as too why we support it.  I know there are many that do not, and they are entitled to their own opinion.  This is just my view, as a mom to two amazing, smart boys with Autism.

To start, if one person asks me to educate them about Autism beause of Light it UP Blue and World Autism Day, then to me, it's a success.  Secondly, for our family, Autism Speaks has helped us first hand.  When the boys were first diagnosed with Autism almost a year ago, we felt lost, defeated, and like we were the worst parents in the world.  G&L we diagnosed as moderate to severe, we were given suggestions on what to do as far as therapy, and then sent on our way.  What do we do with all this information?  Who do we turn too? I started researching on line and came across Autism Speaks.

After I wrote down a list of things to ask, I took the plunge and gave them ( Autism Speaks) a call.  The person I spoke too, gave me a ton of information and was able to point us in a direction and helped us get started.  We were given phone number to call that could help us locally, different therapies, and most of all, this woman listened to me cry for about an hour.  To this day, I still speak to this woman and she checks in to see how the boys are doing.  Although we have never met, I consider her a friend, she was there to help us, when we felt lost.  Now, a year later, I am stronger, my husband is stronger, and most importantly, G&L are stronger and doing amazing things. 

Where does all the money go?  Last year while I was fundraising for the March of Dimes people were boycotting, saying they only get $.10 on the dollar and that was why it was called March of Dimes.  that is false, as is a lot of things that are spread about non profit organizations.  You can look up just about any organization online and there will be good things said, as well as bad things, and many things that contradict each other.

If I can help one person who is newly diagnosed, or educate one person, or help one family get the care they need to give their loved one with Autism the best life possible and the best services, I'm going to do it. 

 You can agree with me, or disagree with me, we all have our opinions.  My views are coming with my personal experience on how Autism Speaks helped my family.  I will "Light it Up Blue" and I will walk with pride on April 26th to raise money and awareness.  Most importantly I will continue to love my children for everything they are and everything they will become. They're going places in this world and I am honored that I am here to be by their side and chosen to be their mother.

Saturday, March 22, 2014

Yes, I Would Take It All Away If I Could!!

It's been so long since I've had time to write.  With the hubs being gone, I barely get a second to come up for air.  The boys have been sick for the past month, I'm fighting a staph infection and we're all pretty much exhausted!

Today we went to a birthday party for some twin friends third birthday.  The boys had a great time!  We got out of there just before them meltdowns so it was perfect timing!  The awesome LC came with us to help with the boys.  I really don't think I could have done it without her.  She is amazing with the boys, and they love her so much.  She's one of the few people we trust with G&L.  It's an added bonus that she teaches kids with Autism.

As World Autism Day is approaching (April 2nd)I've been seeing a ton of things online boycotting it saying it's not about finding a cure it's about acceptance.  World Autism Day brings awareness which helps with acceptance.  I've also read tons of blogs and posts from people saying it's not a disease so don't try to cure it.  I've said this before and I'll say it again.  I know many disagree with me but if I could take G&L's Autism away, I would in a heart beat.  It kills me to see them struggle, to see friends with babies that are only one, passing milestones that we dream of them reaching some day.  I look at it like this, G has epilepsy.  He takes medicine to help reduce his seizures.  If I could take his seizures away, I would in a heart beat.  If I could take his Autism away I would in a heart beat. If I could take away L's SVT and Mastocytosis, would I?  You bet!  The same way I would want to take away his Autism.  Why would any parent, or any human being for that matter, what to see a person, especially their child struggle to talk, communicate, walk, handle emotions, etc.  I know I can't take their Autism away, but I pray that one day they can fully communicate, be independent and maybe even have a job. I have the same dreams for my children that any parent does.  I shouldn't be ostracized for wanting my children to be nuerotypical!  No parent says, "Gosh, I really hope my child has Autism!"  Just because they have it, makes me no different. I want the best for my kids.

With all that being said, on April 2nd....LIGHT IT UP BLUE!  Wear a blue shirt, put a blue light bulb on your front porch, a blue cupcake!  Autism is real, Inspire people, Educate people, Make people aware!  This girl will be decked out in blue!

Tuesday, March 4, 2014

The Magical Place Called School.

For the past week the boys and I have been fighting a beast of a cold.  I think we finally might be on the mend!  Take two kiddo's with Autism who don't sleep much to begin with, add in a stuffy, runny nose and a cough and what do you have?  No sleep for Momma!!!  The hubs is on his deployment and the poor guy is sick too! Go home winter, you're drunk!

Yesterday the boys got an early dismissal from school.  You know, since it was raining!  They also had a delayed opening this morning, which was understandable since we did get some ice tonight.  What did that mean for me?  Two crazy three year olds bouncing off the walls and screaming since their schedule was thrown off.  Ah, the glamorous life of an Autism family.  I'm totally that helicopter mom who is never more then three feet away from her children.  I was terrified to send them to school even though it's a school for special needs.  What if something happened?  What if they were upset and I'm the only one who could understand their nonverbal ways? What if they wonder off? What it, what if, what if.  Well, let me tell you!  The place they call school is what I refer to as this magical place that helps me keep my sanity.  I never thought I would feel this way.  After being with my boys 24/7 for the last three years, I couldn't imagine them not being with me all.the.time.  Well, let me tell you, this magical place takes care of them, teaches them, and loves them for 6.5 hours a day!  They love it there!  They've made friends with other adorable non verbal kids, they have amazing teachers who love and care for them, and I get some time to myself.  I never realized how much I needed this time, until I had it!  Holy, mother of Autism! Did I ever need it!

I attempted to potty train L over the weekend.  It went as I suspected.  NOT GOOD!  He could care less about it, but at least our floors got a good cleaning.  I put him back in diapers and called it a day. He's wasn't making the connection and I'm not pushing it.  When he gets it, he gets it.  I think G is going to be in diapers til he's 20.  It is, what it is.  L's teacher is going to send me some info on potty training non verbal kiddo's with Autism. we'll see how it goes.  G just kept watching L pee on himself with a confused look.  I think he was just happy it wasn't him!

Stay tuned for our awesome raffle we're holding!  Lots of things to auction off so we can raise even more money for our Autism walk!!