9/15/10

My Soap Box

I want to address the fact that there are a lot of preconceived notions about the costs of Autism and the amount of financial help available to Autism Families.

It's very frustrating because each state is completely different. Here in NV, in the past insurance companies have not been required to provide coverage for Autism related anything but that is supposedly changing starting in 2011.  In fact the second our son received his official diagnosis our insurance company did everything they could to drop us.  (That would be ANTHEM BC/BS) We also found it almost impossible to find a pediatrician that would take our son as a patient once I said the word Autism. 

Why doesn't my child deserve to be seen by a doctor when he gets a cold or a rash or sprains his ankle?  He's not a leper people he's a little boy who laughs and plays and climbs trees and jumps in mud puddles like any other little boy he just can't communicate the same way.

9/8/10

Wheels on the Bus...

I know, I know, the last 5 posts... BUS... HUSBAND UNDER IT!

My husband supports my telling the truth in my posts.  Lord knows neither of us is perfect and to Eric's credit he knows when he's been a jackass.  He is far better at admitting it than I am, that's for sure.  Getting an apology out of me is almost impossible, I freely admit that I am a stubborn girl. 

I knew who my husband was when I married him.  It's not like he became a working musician over night. 

9/6/10

The Thick of it...

The S family graciously invited us into their home to check out ABA therapy first hand with their daughter. What we saw was emotional and amazing and the first thing that actually made sense to us since we started on this crazy journey. This therapy had years of data and studies and science behind it to back it up. 

To be honest we went to their house expecting to meet another pretentious person looking to butt into our marriage and only wanting our money and I am happy to say that it couldn't have been further from our previous experiences.  We instantly clicked with their Behavioral Consultant, JP.  He was in our age bracket, to the point and all about the ABA.  Not once did he mention marriage or money. 

9/5/10

"Help" is on the way

At Zander's 18 month check up we went through all the usual questions, "Does he do this, does he do that?"  Towards the end of the appointment the doctor finally noticed he wasn't making eye contact and said, "I don't want to alarm you but we might have a slight concern for Autism.  I wouldn't be too worried at this point because it could any number of things so let's keep an eye on it over the NEXT FEW MONTHS and take another look at how he's doing."

Finally hearing it from someone else my husband was able to look at our son and see it and believe it.

That day sent us into a complete tail spin, the amount of conflicting information on the internet was staggering. We didn't know who to call or what to do. Suddenly all the plans you have for your life; all the scenarios you've played out in your head about being a parent are gone. The anticipation of baking cookies with your kid, doing arts & crafts, building a model plane, hearing about their first day of school, playing basketball with him, first girlfriends, high school graduation, marriage, grandkids, it's all just GONE!  There's a big black hole, you can't breath, you are sick to your stomach, can't think straight and it almost feels like you've lost someone.  You begin to grieve and YOU GET ANGRY and you get sad and you feel like you're in a bad movie that you can't escape from. You're full of self pity. You have no one to talk to who understands because you don't even understand it and since you can't take it out on your child, you begin to take it out on each other and your marriage.
The worst part is that the person you are the most angry at is yourself. As a mother you instantly think that there must have been something you did wrong during your pregnancy and that this is somehow all your fault; your children are a reflection of you so when something goes wrong you are embarrassed and you feel like a total failure.

Belly of the Beast

At 13 months Zander stopped sleeping more than 2-4 hours a night. At first we blamed it on teething, the poor kid had been teething non stop from the time he was 2 months old. But then he began waking up with what I thought were night terrors and the equivalent to sleepwalking. His eyes were open but I honestly didn't think he was awake because he would look right at me but didn't recognize me. He looked afraid of me and it would take 20 minutes to "talk him down" and get him to realize that he knew me, and realize that he was safe.

He would want me to pick him up but when I did he would freak out and want back down and then start crying and want back up and then back down again,  he was confused by what he was feeling.  You could see he was fighting with himself.  Eventually the side that wanted to be held would give in out of pure exhaustion and after a few hours we would curl up in the recliner in his room and he would whimper himself to sleep and I being too exhausted to move would drift off with him just praying he'd sleep more than 2 hours.

9/4/10

The Calm Before the Storm?

As I said in my first post; Zander was the cutest little thing I'd ever seen.  I couldn't believe something so precious came from ME?  He was a great baby but intensely fussy. His moods were extreme meaning when he was happy he was super happy, cooing, smiling, animated and melted your heart. When Zander was upset though he didn't cry like a typical baby; he screamed bloody murder and often panicked us thinking some unseen force was hurting him. He was inconsolable and as new parents it was very upsetting.

He was the first baby I'd ever come across where old standards did not calm him down.  He hated his swing and did not like the motion of facing backwards in the car.  It was my arms, the rocking chair or his changing table and that's it.  It also made it very hard for us to ask anyone to babysit.  There were a few times we came home after just running to the grocery store to see my moms hair standing on end and a look of panic across her face. 

The Beginning

My husband and I had talked about having kids off and on from day one.  Usually he was for it and I was dead set against it.  It's not that I didn't want to have children; I always wanted kids... just not my own.  There was a voice in my head from the time I was 12 telling me not to have children because they would not be okay.  As I grew up I always felt my calling was to take in other peoples kids. 

Throughout the dating years my husband and I went back and forth and I finally caved saying that I would consider having a child as long as we also either adopted a child or fostered a child.  To be honest I always figured I would outsmart my husband by bringing in the other children and he would fall so in love with them that he would understand that biology didn't mean anything.  Apparently God had some other plans for us. 

On Father's Day 2006 of all days, we realized that I was pregnant.  To say that I was shocked is an understatement.  I have never been so confused about my own feelings before.  I wanted to be happy for my husbands sake but I just couldn't be.  I felt like it was the worst possible timing ever.  I had just found my dream job and was looking forward to kicking my career into serious overdrive and we had been making plans to do some traveling over the next couple years. I really felt like my life had just been ripped away from me without my permission. 

It didn't help that the experience of being pregnant was the most miserable experience in my life.  I refuse to lie about this because I know there are other women who've felt the same but are too afraid to say it so I'll say it for all of my silent sisters out there... I would look at other expecting moms who were so happy and feeling better than they ever had in their lives and seriously just want to punch them! 

I felt like I was the guy in Aliens, you know the one that had the creature come out of his chest/stomach!  Pregnancy was weird and feeling something moving inside me and the realization that something was feeding off of me grossed me out... there I said it!  Now all you perfect let's sing a Disney tune mommies out there can pick your jaws up off the floor and breath because while I really did have those feelings they all went away the second I held my son for the first time. 

Zander was born on Valentines Day 2007.  I have to admit that I was surprised at how instantly I loved him and how quickly my protective instincts kicked in.  He was perfect, 10 little fingers and 10 little toes, all his features were symmetrical, his head was perfectly round, there were no extra limbs or large birthmarks and he really did have the cutest button nose you've ever seen.

Welcome to mAUmTISM and thanks!

I am the mom of an adorable 3 1/2 year old little boy with Autism. He is my world, my heart, my soul. If you are a parent struggling with Autism in your own home I hope my experiences will feel like a warm blanket wrapping around reminding you that you are not alone. There are plenty of us out there!

I hope you will share your related stories, laugh with me, cry with me, stomp your feet and let out a few expletives with me haha! If you are a friend, family member, or a complete stranger who does not have first hand experience with Autism; I hope my blog will help you open your heart and mind and motivate you to reach out to members of your community who are struggling to navigate through Autisms dark and choppy waters.

I am a mom... my son has Autism....= mAUmTISM...
(THANK YOU Estang & Wiley FOR GIVING ME THE COURAGE TO PUT IT ALL OUT THERE!)