Birthday to me...

Some moments with Autism can be bittersweet.....

 

 

Give your little ones an extra squeeze today from Aunt B :)



Hey nony nony

I'm tired.....................................

Those two words do not always come from a negative place. It's OK that I'm tired; I've earned it. The dark circles under my eyes and lines on my forehead are permanent damage from my son only sleeping  2-4 hours each night for the first 4 and a half years of his life.

People think that's an exaggeration but sadly it's not, it was very real or rather surreal and often foggy dreamlike. There are things I can't recall at all and arguments that I'm sure my husband wishes he couldn't, lol. I was literally not in my right frame of mind, how could I be?

We do what we have to do to take care of our kids.

Anything that sort of goes against the "norm" of society, or against what we've always believed something should be can be hard. So what's hard for me is hard for me and what's hard for someone else is hard for them. I think about the parents out there that are worried their child isn't going to live and here Zander is full of life. I think about the parents that have to deal with feeding tubes, wheel chairs, physical abnormalities, seizures, asthma, chemotherapy, dialysis and THOSE PARENTS AMAZE ME and INSPIRE ME!

Boo Freakin Do Da Hoo

So I've been sitting on this for a while now in hopes that I would be able to keep myself from sounding like a super angry Bee-yatch but who are we kidding right? Lol they could put my face on the Angry Birds app and call it Angry Brandi some days for sure.  Ha ha can you see my giant stress crevice of a forehead flying across the screen knocking down various shaped puzzle pieces?! 

I just can't seem to let this one go and it's bothering me so much that I'm not sleeping. 

My son is NOT a CASH COW because he has Autism.  People think that because a lot of Autism Families receive funding that it doesn't matter what they charge to work with our kids because it's not really our money..

Glue Sticks & Microchips

Z and I are out in the back yard a few weeks ago and I see a baby bird struggling in the yard so I go to put it back up in it's nest which is up on this back deck/bench area thingy.  I turn around and there's NO Z ANY WHERE!  He's not in the grass or on the side of the house, and the door to the house is still closed. Finally after a heartstopping 20 seconds (felt like 20 minutes); I see a flash of orange runing along the OUTSIDE of the fence!  I bolt down the deck stairs, down the backyard hill to discover that after three years in this house, he's figured out how to unlatch the fence! 

I am sure I looked like a crazed lunatic screeching after him through the neighborhood.  I can only imagine what the neighbors thought :(  I chased him into and out of the neighbors garage, "Hi Chris!" and into and out of the street, up the block, in and out of several yards before I finally got my hands on him. 

play-dates, what if's, and Zpong OH MY!

Yay! Zander had his first official playdate today with someone who isn't related to him, one of his classmates from school, Tristan! It went pretty good. It's hard to say playdate because it's not what you'd probably expect, there's not a lot of direct interaction but there was definitely some side by side playing here and there which for my son is AWESOME! Even a year ago a play date would have consisted of my son immediately walking as far away from the other child as possible or asking to go home. Now it's more like what you see a 2 or 3 year old do, small observations, interactions, little imitations. But holy cow balls it's progress and you all know that in Autism any progress is a great thing!

Just My Opinion

I would never begrudge any family dealing with disabilities for trying to bring in extra cash to help offset the financial devastation that can occur when trying to care for their loved one or someone creating a project who's true goal is to help educate and spread awareness! I don't know about you all but with me a little honesty goes a long way!

Five by Five

"Present"!  That's the first word out of my sons mouth at 6:30a.m the morning after his 5th birthday party. 

Happy he's communicating... not so happy he wants a present at 6:30 in the morning!
All in all I think he had a pretty good birthday. We went with a class only party this year since it was his first year in "school".

We've been blessed with a wonderful group of parents in the class and it was fun to see them in that environment away from school playing with their little ones. We felt bad for excluding our friends and neighbors but there's more than one special needs kid in Z's class and we wanted to make sure all the families felt comfortable coming out and didn't want them to shy away because they didn't want to deal with a room full of strangers. I know how anxious we get when we take Z to a party full of people we don't know.

We opted to cut the party short and take presents home because it takes Zander HOURS to open presents. I hope it didn't feel like, "Thanks for the presents... now get out!" He just insists on playing with each one for a while before he will even consider opening the next.

We could also feel the usual balloon-ageddon meltdown coming as soon as we hit the party room and our son zeroed in on the balloons.

(In my best Seinfeld voice)..." BALLOONS!" (Newman!)

Who would have thought that my biggest nemesis in life would be stupid freaking birthday balloons!

CHEEEEESE!

Ever wonder what it takes a special needs family to get just ONE usable picture? 

Tis the Season

Christmas?!?  My son doesn't know his own name half the time but somewhere along the way he's learned the word Christmas!  We put up our trees on Monday while he was at school and the first thing he said when he walked in the door was, "Christmas", bless his little heart.  Big change from last year... Last year was what I like to call the Great Christmas Standoff of 2010; a battle of wills between him and I regarding the Christmas tree.  I preferred the decorations ON the tree and he felt the decorations would be better off lying around the floor of his bedroom.  I'd put them up, he'd take them down. He also launched a one toddler -Free the Snowmen! revolution. Apparently I was the big oppressor of his "people" and my son felt it was his duty to reunite the snowman ornaments with their long lost relatives the snowman figurines, towels, stuffed snowmen and snowmen stockings who had been so callously scattered across the land (our house) by yours truly. 

BAM! POW! THWACK!

So a four year old walks into a bar....

Just kidding!

Not really, he actually walked into a bar...

at the park...

TWICE!

Every time Zander grows he has to re-learn about the space around him. It's hard to explain but it's as if he is unaware of anything above eye level unless he is looking up and actually sees it.  It's really bad when he wears a baseball hat in fact both times he walked into a beam at the park he was wearing one and couldn't see the approaching beam above the brim. 

It's like something out of a dumb comedy.  You could hear the loud thud from across the playground and on one hand the visual was funny but on the other hand as a mom you're freaking out because how many blows to the head can one person take?  You hear all the time how a person hits their head once and then dies 2 days later from it and here's my boy, "Captain Steel Head".  

roller coaster

Why can't nutritionists and doctors be consistent?  One person tells you to do one thing and the next person you speak to tells you the exact opposite and in the meantime your kid continues to suffer.  If people only knew how much money we've wasted on other peoples theories to help our son.... sigh.

Currently we are fighting a massive yeast takeover in Zander's poor little body. 

Breath, Balance, Laugh

Cheers to March and April...

1. Meet with school district to start Z's IEP and check out a few autism pre-k strategies classes

2. Tell school district special ed coordinator we want to potty train Z before he starts a class.

3. Get laughed at by school district special ed coordinator for wanting to potty train Z before he starts school.

Bad Square, Bad, Bad Square!!!

So I have to ask:
Is it really that hard to understand that Z's "reality" is different from what most of us consider the "real world" ?  Is it too much to ask people to try and understand that no matter how much you try he will never see the same thing you and I are seeing?

We're not asking for people to bend over backwards for him.  We're not asking for people to let him take the easy way out.  Just a little extra patience and compassion because as frustrated as you may be with the fact that he can't do the simplest of things; think about the fact that he's the one who knows exactly what he wants but can't get the damn words to come out of his mouth.  Can you imagine? 

Let's go there....  imagine that you go out to dinner with your friends or family and are having a great time and the next thing you know you are waking up to the bright lights of a hospital room.  Imagine there are people standing over you talking to you but they sound like they are speaking to you under water. 

It's just the littlest of things

Last week while my son and I were out playing in our first big snow storm of the year; I decided to take some pictures because he was having so much fun.  As usual when I grabbed the camera I prepared myself for 20 minutes of jumping around like a monkey to get his attention.  I went through the list of funny voices he likes and songs from favorite TV shows; all the tricks I'd gotten used to using in order to hopefully get one shot of those beautiful blue eyes looking toward the camera.  Responding to his name and making eye contact are two of the things that Autism took from him and over the last two years resulting in many a heartbreaking photo session.  One year I just gave up and took a picture of him sleeping in front of the tree for our Christmas card! 

Apple meet the Tree

Zander's Autism has really forced us to take an honest look at ourselves and has helped me not only understand our son a little better, it's helped me make a lot more sense of my own life over the years.  It's very probable that both my husband and I fit somewhere on the Autism spectrum ourselves.  It's brought us more patience and compassion not just with him but with each other and I think even ourselves.  I think we're learning to cut ourselves a little slack which is always a good thing.


Here are some things we have in common with our son the difference is that for him it's an extreme version of the characteristic:


I've always had trouble with eye contact mostly because I can't tell a lie to save my life.  My feelings are always written across my face and I'm always afraid if I look someone in the eye they will be able to see how I really feel.  

Let it Be

So my son can build the Seattle skyline out of toothpicks from memory, solve mysteries of quantum physics and play Mozart on the piano blindfolded with his left foot,
 OR...
maybe he could just be a 3 1/2 year old little boy who likes dinosaurs, snakes, Nemo and jumping in mud puddles! 

For the longest time we had to deal with peoples uncomfortable reaction to finding out Zander was Autistic, some acted like he was contagious or like we'd done something wrong, others acted like he was dying, a few evil people even thought it was funny, but now with all the media coverage over the last few years our society has actual become desensitized to it.  Now it's like, "Oh he's Autistic? So what? like it's no big deal "doesn't everyone know someone now who has it? or the opposite which is my favorite..."So what's he good at?  Autistic kids are genius at something right?  Does he paint or do those cool line sketches?  Oh is he a musical prodigy or can he solve the space time continuum and bring back Doc and the DeLorean?(Sorry to anyone who is under the age of 28 for that reference... Back to the Future... Go ahead Google it, you know you want to)

What happens if Zander just so happens to be an average little boy who happens to have Autism? 

The Monster Within

So what causes autism?  I have been asked that question at least 100 times since it's come into our life.  It's hard not to laugh because if the world of medicine can't figure it out then why would I know?  You will find several camps with regards to that question and in each group of people a large percentage are positive that only their views are correct.  You can go on any Autism message board and find parents/doctors/therapists duking it out through a barrage of verbal assaults.  I guess sometimes it's just easier to take out all your emotions on  "susieautsmom73" than risk exploding in your own home. 

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.

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. 

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. 

"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.

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!)