Autism Awareness Month 4/30 - Bella - Family

I'm going to wrap up what the Autism Awareness Month project has meant to me in a post tomorrow. I don't want to take anything away from the amazing writer I'm featuring today...

I spend a lot of time wondering what Jack's peers think of him. Do they know what autism is? Do they like him? Is he just a "spaz"? What does an NT six or seven year-old really think...

So I asked one to write for me.

Bella is Jack's cousin, my brother's kid. She is 7 years old and in 2nd grade. She knows the word autism, and she knows her cousin Jack has it.

I could not be more proud to be her uncle. It is very humbling to admit how jealous I am of a seven year-old, but, Bella, I've never met anyone who has their shit together like you. Uncle Jordan loves you, thanks you, and, most importantly, is proud of you.

Ladies and Gentlemen, "What Jack means to me", by my niece Bella...

It isn’t easy to play with him. 

It is harder to get his attention.

He likes to line things up…like Tao’s heels.

Sometimes he doesn’t want to play games the other kids do.

I feel concerned when he has a meltdown.  I want to help him and I can’t.

I have to remind him to clean up.

Usually I can get him to do it.

I like that he makes giant towers out of legos.

He likes to play outside with me when we play family.

He likes to look at and pick the roses in the garden.

He likes to play shoes with me in Tao’s office.

I really like when we go to Tao’s ocean and climb on the rocks.

Oh yeah and Lake Tahoe we swim.

We both like to make whip cream and strawberries.

He is not as calm as my other cousins…I’m never sure if it is because he has Autism or Jack being Jack.

I like when Jack visits because we have fun.

Sometimes he squeezes my hand too tight.

I taught him Mine Craft.  He loved it.

It does not matter if it is Jack being Jack or Autism.

I love Jack.

Ed. Note - Some of the letter was dictated, some of it handwritten... The only edits I made were correcting spelling errors (which are adorable, btw).

Autism Awareness Month 4/29 - Adventures on the Spectrum - Blogger

I included a post earlier this month about the stigma of aggression (here) in our children. 

What about when it's a girl?

Adventures on the Spectrum is a fantastic blog written by a mother raising a daughter on the spectrum. I was delighted and impressed when she agreed to write this one for us.

Ladies and Gentlemen, I am honored to present, Adventures on the Spectrum...

Thank Heaven for Little Girls

MAURICE CHEVALIER

FROM THE ALBUM "GIGI (O.S.T - 1958)"

BUY

There's a girl at the Birthday Party doesn't seem to quite fit in. Her social cues are off and she rather run around than sit and play. She's a gorgeous little girl, some say her beauty portrays a porcelain doll. She pushes kids out of the way, not because she's mad, but because she hasn't quite figured out her place in space and using her words correctly to do so. Everyone notices she's a little different. But she's so cute. But she can talk. But she's so smart (splinter skills). But she can walk. But she looks so normal.

"Happy birthday to you Happy Birthday to you YEY" the crowd screams. She screams in horror and sometimes flees under a table. No one reacts, but everyone is wondering why this little girl just did that. It's cake time. Also an indicator the party's almost over. She melts. Screams. Hits her mommy. Scratches her mommy. The whole room stops. Mommy removes her from the room. She's calm again playing with all the kids. I can see she's melting. I see her time ticking away but I remain on the sidelines. I watch her, she flees under something and lays there for a while. A parent looks at me like how could u let her do that. That parent scolds their child, "You do not go under there like Grace" while side eyeing me. Like Grace? I say to myself. I swallow a lump down. Are you blaming Grace? Sometimes I want to scream, "you can not discipline a neurological disorder!"

I know when things like this happen, most people can not wrap their head around my daughter. This is hard for me, because of this, some lack empathy for her. And my girl needs empathy.

Being a girl with ASD is tough, add aggressiveness and impulsivity the painted picture becomes more difficult for an outsider to process. In a room full of people who watch her melt down a huge part of the room say to themselves, discipline, spoiled, mean child. I can feel it. Their eyes burn through me as my daughter scratches my face or kicks me in the stomach or tosses a full cup of soda across the room. It's so hard to keep my heart from racing and to calm my daughter down when everyone's watching. I've learned over the years to block everything out and focus on my daughter's struggles.

Every mothers dream is to do "girl like things" with their daughter. No one pictures a mother restraining her daughter. A mother telling a school district my daughter will aggress towards anyone who puts demands on her. A mother zipping up her daughter's bus harness. A mother covering up scratches on her face with make up. A mother making sure nothing is in the backseat so nothing gets thrown at her while driving. Society is not aware of this side to motherhood in an ASD girl's life. It's never spoken about.

I am not ashamed of my beautiful girl, Grace. She does not mean what she does, and I will never give up on her. And I will work with her as long as it takes to calm her down. She's worth every scratch, bruise, and scrape. She's funny, so smart. And on her good days she's so loving. She loves so purely and so innocent.

She's not a monster. She's not a bad kid. She's not spoiled. She's Grace. She is a girl with Autism
Spectrum Disorder. She needs help navigating in a world that her brain can not fully process. She needs empathy. She needs you not to fear her or make her feel like she's a bad example in front of your kids. She loves. She needs your understanding. She needs your love. She needs acceptance. 

She needs above all AWARENESS.

Ed. Note - Adventures on the Spectrum asked for a song title for this post (as is the "Find My Eyes" style). The choice was mine.

Autism Awareness Month 4/28 - Cindy - Friend

I'm very proud of today's post. 

Let me tell you a tiny bit of back story of how I know Cindy. Jack was in a full-inclusion general Ed Kindergarten last year. On the 2nd or 3rd week of school, I had noticed a sweet little girl in Jack's class had really made the extra effort to engage Jack... better yet, I had noticed that her Dad picked her up in the afternoons... and he wore Pink Floyd T-Shirts. So, one day, I mustered up the courage to approach a stranger and said "Excuse me, you're Emily's Dad, right? I just wanted to say that my boy, Jack, is in her class and has autism. Emily is just the best typical peer model I've ever seen. You should be very proud of her" 

As soon as I said it, I realized how goofy it sounded. Instead, I just got a smile and "Oh. I'm not surprised. Emily's older sister has Down Syndrome".

And Mike and I (and his family) have been best friends ever since.

Cindy is Mike's wife. She asked if she could write a post about her relationship with Autism as a parent of Down Syndrome. I couldn't have asked for a better idea.

A 2010 poll reported that 15% of Children with Down Syndrome were also autistic.

A 2011 poll reported that 20% of Children with Down Syndrome were also autistic.

A 2012 poll reported that 25% of Children with Down Syndrome were also autistic.

Whichever number is correct... our communities are clearly combining. 

What does that mean for schools? What does that mean for services? What does that mean for inclusion?

Ladies and Gentlemen, I proudly present my friend and fellow mom, Cindy...

I don’t have a child with autism. My daughter was born with Down syndrome, but I too, have a relationship with autism. Like with all close relationships, my feelings about autism are complex. Thorny, even.

It probably began the day we dropped my daughter off at her pre-school class. She was only 3, and a beneficiary of an early intervention program. The teacher that morning had her arms around one of the students, restraining him. There was a pained but resigned look on her face as the kid thrashed and screamed. The teacher was going to be like that for a while. Meanwhile, her aide was running around getting ready for the class, and here we were, dropping off our child, our baby, into their care, into that environment. What was I to do? Just leave her and go? Did the adults in the class even know she was there?

We had our own issues at that time. We were working on attachment issues, and we were supposed to give her a cheerful goodbye, and just go. She needed to get used to the going-to-school routine. And so I left her. With a screamer and two adults who were not paying any attention to her.

Over the years, she picked up many things from her autistic classmates. Thankfully, the head banging only lasted one time (she got angry, banged her head against the wall, paused, then rubbed her head going “ouch“). Most annoying was that my verbal child regressed to grunting and pointing for things she wanted. We were able to nip that in the bud fairly quickly, but the spinning / stemming has not stopped to this day.

Over time we have come to find that Special Education is dominated by autism. All of the teachers and therapists can speak with knowledge and experience about educational methods that work, only to be met with blank looks when I brought up that children with Down syndrome are good mimics and will try to beguile you out of doing schoolwork. They hadn’t read that literature, apparently. You see, my daughter was the only child with Down syndrome in the class. Perhaps, the first child with Down syndrome those just starting out in their careers had ever taught. Autism, on the other hand . . . They had lots of experience with that.

On the flip side, our family has been enriched by knowing people who have been touched by autism. Our second daughter was in Jack’s kindergarten class and she thinks he is the most interesting boy she knows. She gets all excited when goes over to Jack's house, and she doesn’t want to leave. This is not an exaggeration. She cries like a little part of herself is breaking when she has to leave their house.

I can’t help but believe that parents of autistic kids are just better at the whole special-needs-parenting thing than I am. They are better connected, better at navigating health care systems, and know every educator and therapist in town. On the whole, they are just better people than average. They are funnier, watch cooler shows on TV, and generally seem to enjoy life more than I do.

I don’t have a child with autism. My daughter was born with Down syndrome, but I too, have a relationship with autism. Like with all close relationships, my feelings about autism are complex…

Autism Awareness Month 4/27 - Julie (Mom) - Family

Today's post in the Autism Awareness Month project is a special one. It is written by an attorney... who also happens to be my wife and Jack's mom.

She writes about advocacy and the stigma of being a working mom. She writes about how in watching our children grow up, sometimes we do too.

Julie has written for us before (here), and I finally coaxed her into doing it again. 

This compliment might be getting old, but she is still the best thing my name has ever been attached to...

Ladies and Gentlemen, It is my treat to present Jack's mom and my wife, Julie...

What autism means to me is a lesson in judgment.  Probably just the first in a string of life lessons that my son will teach me.

For most of my life, I’ve been the typical people pleaser.  Even though I often argued with my mom about the best course of action, I (almost) always did what I was told.  I dutifully studied hard in school.  I never got in trouble.  I always made sure to be nice to everyone.  In fact, I secretly challenged myself to always make sure that everyone liked me.  This type of reality worked for me.  It made me happy, comfortable and secure. 

This all changed when my son was diagnosed with autism.  I remember going to a child’s birthday party soon after my son was diagnosed.  Instead of playing with the other kids, I watched my son obsessively take one balloon after another from the dining room to the backyard where he released it into the air.  When I tried to stop him, he screamed.  I remember the looks of disdain from the other parents at the party.  I remember the looks of the other kids, who were both frightened and amazed.  I remember dragging Jack through the house towards the front door to leave, as he screamed and thrashed.

Incidents like this continued.  Tantrums in the middle of the grocery store.  Jack hitting and kicking me while I struggled to get him into a car after leaving the park.  Jack yelling that he hated me in the line at Target.  Me losing it and screaming at him in my loudest voice.  It was my own worst nightmare.  I was seen by others as a terrible parent who couldn’t control her son.

I was also the mother who worked.  And not just any job, I was an attorney who worked twelve to fourteen hour days, and often times on weekends.  Therapists, teachers, and even my coworkers would jokingly ask whether my children knew who I was.  I was seen by others as a workaholic attorney who didn’t care about her children. 

The overwhelming feeling of judgment only added to the sadness I felt for my son and his future.

This all changed in May of 2011 – Jack’s kindergarten placement IEP (individualized education program).  Jordan and I were shocked when the IEP team recommended that Jack attend a special day class for kindergarten. Jordan (who never has a problem standing up for what he believes in) was the only person during the IEP that stated he didn’t want this, that he wanted Jack to be given a chance to attend general education kindergarten.  I didn’t know what to do, and I felt the familiar pull of doing what was expected of me, of following the sage advice of professionals, and of not rocking the proverbial boat. 

We asked for two weeks to explore our options.  During those two weeks, Jordan and I talked of nothing but Jack’s future and what we thought was best. We researched.  We spent hours speaking to professionals.  We took tours of special day classes and general education classrooms.  Finally, we decided that the best choice was to advocate for provisional placement in a general education classroom.

Instead of feeling nervous about the next IEP meeting, I felt invigorated.  Advocating (something we hadn’t had to do until now) was something I knew how to do.  I prepared just like I normally did for court.  I prepared a binder of materials and practiced my arguments with Jordan and the other attorneys in my office.  Delivering my speech to the IEP team is my proudest moment.  Not because I realized that I finally had something to contribute to my son’s future.  Not because all those hours in the office were finally paying off for my family.  But because in that moment, I didn’t care about the IEP team’s reactions.  I didn’t care that they looked disappointed.  I didn’t care that they disagreed.  All I cared about was what I thought was best for my child. 

We all deal with judgment on a daily basis.  It is a fact of life.  For me - the consummate people pleaser - it was the realization that I love someone more than myself that changed me.  That him and his well-being (and that of my daughter) are truly all that matter.  At the end of the day, if I’m proud of my actions in their regard, that is all that matters. 

Autism Awareness Month 4/26 - Blissfully Discontented - Blogger

Every once in a while I read another blog and shake my head in jealousy saying "damn, I wish I had written that". 

Blissfully Discontented makes me say that every time. She has such a way with words... truly a sensory delight to read anything she puts to paper. So I asked my favorite writer out there (My Favorite blogger, Kurt Vonnegut was unavailable), if she would do me the honor of contributing. 

So, if you want to know who do I read, love, and respect... 

Ladies and Gentlemen, I present Blissfully Discontented...

What Does Autism Mean to Me?

 

One year ago, yesterday, I walked into a doctor’s office with my son, Ben, and for the first time in our two years of seeking an answer we FINALLY found someone who could see him.  I mean REALLY see him.  April 10^th, 2012 was the day the word Autism entered our vocabulary.  And our world.

 

I make it sound as though the word thundered out of the doctor’s mouth, shaking the ground beneath us, knocking me from my perch on his leather sofa, sending me into a spiral through another dimension.  Okay so maybe it felt that way at first.  Truth is, it was no surprise.  Rather than feeling fear I felt relief.  I felt resolve.  I felt validated.  You see, we had been living the Autism journey for 6 years and hadn’t realized it.  Did I consider it?  Absolutely.  Did anyone else acknowledge my concern?  Absolutely not

. 

And so we began our trek, blind as bats, and ignorant to boot.  Soon after getting the diagnosis, I found myself eyeball deep in Autism-related internet vomit.  Facebook pages, agency websites, you name it.  I didn’t entirely understand what I was reading yet or what it all meant.  I recall sharing a story on Facebook one day, regarding a cure for Autism.  A friend of mine commented on my post that she was rather frustrated with the thought of curing Autism…and that she couldn’t imagine her son who is also on the Spectrum any other way. 

 

One year later…I get it.

 

There are certainly triggers, responses or situations I wish I could change.  There are nights when I’m on my knees praying to God for the next day to be better.  Days when I just want to crawl into Ben’s school crying and begging for help.   I’d be lying if I said I spend every day appreciating what some would call sheer quirkiness.  And yet…I’m learning to appreciate every seemingly small success that may not have occurred to me if Ben were not on the Spectrum.  Things I know I take for granted with his siblings.  

So what is Autism to me?

It’s a little boy whose creativity in costume design never ceases to amaze me

It’s a little boy who is never scared to climb the mountain before him.  Some days to the extent he puts himself in danger, yes.  But fearless, nonetheless. 

It’s a little boy who has challenged his siblings to think outside of the box and has taught them to love unconditionally.  Asking for help with tying his shoes.  Or simply partaking in a light saber battle.

It’s a little boy who some days just needs solitude from the world but doesn’t mind letting his momma join him.  Soaking in a clear emerald sea of water while the sun sets and the beach clears.  Not saying a word.  Just.  Being.

It’s a little boy who has tested us beyond belief and taught us what he needs when the all else is simply too much for him to bear.  Letting us hold him tightly while he rages against us and the world.  Feeling his sweet little body fall asleep in our arms.

It’s a little boy who after two years with his classmates, makes the effort to build friendships in school, invite those friends to his birthday party, and despite no one attending, he sits in front of his cake with his subtle smile across his sweet face making his wish and blowing out his candles, finding the good in our celebration.

It’s a little boy who astounds us with his thoughts and words.  Leaving me speechless on a regular basis.  He may not always verbalize what is going through his beautiful mind but when he writes them down…look out. 

It’s a little boy who can’t sleep at night unless he’s surrounded and covered by his weighted blanky and every single stuffed animal he owns.  Who still has his sleepless nights and lands at my bedside from time to time, without saying a word but gently slipping under the covers and folding into my arms like the little brown bear that he is. 

It’s a little boy with sock problems and waistband problems, forever seeking his “comfy clothes” because heaven forbid the hem of his pants touch the floor and slip under his feet.  A boy who never found so much joy as the day we discovered mommy’s favorite running socks come in kid’s sizes too!   And I get a chance to save the day.

More than anything…I want you all to know that Autism is different for everyone.  Some days my Ben melts down.  Some days he only speaks movie lines.  Some days he asks for food combinations odd enough to make my stomach churn.  Some days he plays alone at recess, in his own little world.  Some days he is completely engaged.  Some days he smiles and laughs and jokes with his siblings.  Some days he does all of his homework just as he should.  Some days he transitions just fine in the classroom.  But every day he has Autism.  It is a part of our lives that we are not only coming to terms with but learning to appreciate.  I wouldn’t change Ben one single bit.  I’ll take those frustrating days in a heartbeat so that I can watch him experience the win, the success, the glory when he pushes beyond what others see as his limitations.

THAT is what Autism means to me.

Autism Awareness Month 4/25 - Briana (sibling) - Fan

I put out the last call for submissions in the Autism Awareness Month project at Find My Eyes to get one last fan post. The author of a previous post messaged me back with:

Are you interested in a perspective of a sibling? I can ask my daughter who is 25 what autism means to her?

I have never met Briana, never even exchanged phone calls, and she wrote this for us. We are all truly blessed for it.

There is a lot of worry, both by and for "siblings of the spectrum". This amazing young lady (25) shared her journey with us.

I have no more words to describe how special this post is to me, and to our project.

Ladies and Gentlemen, I am truly blessed to present Briana...

When my mother asked me to write this article for her favorite blog I honestly wasn't sure what to write. Should I write a series of funny stories about how I've found him on our roof at 3 am after coming home from being out all night (relax mothers I'm 25), how he has gone in cahoots with his other siblings to drive my Chevy blazer into a tree, paint the fender and bumper pink and the tires white, how I've almost plummeted to my death (no, in all seriousness, legit almost died) because he left the opening to the attic open and our obese cats wandered in there and I had to walk across beams in the attic to get them out and fell nearly catching myself as I watched pieces of plaster drop to the floor of the garage (first world problems)...obviously the list goes on with fun stories. At the end of the day they all just become funny stories, memories to revel in and laugh at later but while in the moment, I've contemplated throwing them in front of a bus.

Then there are also the private moments that are rough and mentally draining. It's like one of the moments when you look up to the sky and shout IS THIS A JOKE?! Then you remember that this is real  life, this is my life, when I have a sibling on the spectrum. He had a bad day at school and he is so anxious and introverted he doesn't know how to deal with all these emotions so he reverts back to child like behavior. He will urinate and poop on my floor, in my bookcase, on my comforter...basically everywhere but a flippin' toilet. But that's ok because it can be cleaned and things can be wiped down and my bedding can be washed and then within a few hours it's all back to normal. Well for at least an hour.

So he likes to scale buildings, explore places he should not be, get construction magazines mailed to our house so he can look at the pictures, poop on your (ok, my) bedding, drink ten cups of milk before bed and watch operation repo. He's a normal boy who likes to wrestle and play video games and he has a heart of gold and funny dumb things to tell you that make you look at him and laugh and no matter what HE IS STILL MY BROTHER. And no matter how many times he shits in my room I will always love him. (I will love him even more after he cleans that shit up).

And I know, that since I am the oldest child, I will take care of him if something happens to my mom. This is a daunting, scary possibility.  I hope that I will be able to handle it gracefully and patiently.  And of course, there will be some humor involved. I have told my mother, that no matter what, she should not worry, I have his back. He is my brother.

So as you can tell, when you grow up with a child on the spectrum, it affects the whole family, not just the parents but it is also draining on the siblings.  I think that the hardest part on this journey goes back to my sophomore year in high school, my mother was so wrapped up in the diagnosis, that she accidentally forgot my birthday.  I was a swimmer in high school, she went to pick me up after practice. I got in the car with a handful of balloons, and she said to me “What are those for?” “Did you break another personal record?” I said no “Mom, it’s my birthday. “ But you see, that is life with a sibling on the spectrum. It is not that she loved me any less, but he needed her more.

So as a sibling, you learn about concessions. That sometimes the typical siblings take back seats to the special needs of the child with autism. That their inappropriate actions, do not represent who they truly are. That some days are harder than others and some days, they are a true joy.

Ed. Note - Thank you, Briana and Maria. Thank you.

Autism Awareness Month 4/24 - Catherine - Fan

Today's post in the Autism Awareness Month project comes from a fan.

I asked Catherine to describe herself and she sent me this:

I am a nurse, mom of two wild and wonderful boys, and have been married for 7 years to the love of my life, who is a two-time cancer survivor and bone marrow transplant recepient. I am surrounded by boys and wouldn't have it any other way!

Again, I could not have said it better.

Her post is both informative and beautiful.

Ladies and Gentlemen, I present Catherine...

I've been blogging for a few years now, mostly because it's therapeutic for me. Life has been a series of adverse events for our family since 2009. October 26, 2009, to be exact. That was the day that separated my old life from my new life. That's the day when we got the news that my kind-hearted husband's leukemia had relapsed. At the time, our older son was 2 and I was 7 months pregnant with our second son. The next three months were a whirlwind of complications of chemo for my husband, a near death scenario, and my trying to balance it all. With a man who would never be the same. He went into surgery not long after diagnosis to have a chemo port placed in his brain. He knew who I was when he went in for surgery. That was the last time he would know me for almost two months.

In the midst of this drama, my sweet Caleb decided to show up three weeks early. He was an easy baby, hardly fussed, nursed like a champ. I thought that at least something was going right in the midst of what was horribly wrong. Adam then went for a bone marrow transplant when Caleb was two months old. He was 2 and 1/2 hours away. God bless his sister Beth for going with him to be his primary caregiver so I could still work. Thus began my weekend visits every weekend to care for him. During the week, I cared for my two sons plus my then 12 year old stepson and 12 year old nephew.

Maybe that's why I didn't really notice that Caleb was not reaching his milestones. I am a nurse and worked in pediatrics for a long time, so I am well-versed in milestones. The alarm bells started going off at 9 months and by 12 months, his doctor (God bless her!) referred him to a state program for children under three to evaluate and treat developmental delays. At 12 months, Caleb could sit up with help, was only able to army crawl (using his elbows to drag himself across the floor) and could not take solid foods without gagging and vomiting every bit of it. Thus began our journey of therapies, specialist visits, and genetic testing. I knew in the back of my mind that he could have autism, as every male in my husband's generation on his dad's side has a child with autism. We got the diagnosis at age two. I was devastated, as I would expect any parent to be. But hopeful, too, because he had made tremendous progress with therapies and continues to do so. At age 3, he goes to school and is starting to speak in short sentences and learns new words everyday. He and our older son, Eli, keep my husband hopeful and bring him alot of joy. Even after transplant, he is chronically ill and realistically, doesn't have a long life expectancy. When he's feeling down, Caleb smiles his big toothy grin and makes his daddy feel better.

Caleb is an absolute joy. His meltdowns are horrific, yes, but in general, he is a happy child. He didn't hug or give kisses till he was three, but now freely doles them out.

So what does autism mean to me? Autism means Caleb. Quirky, loving Caleb. Meltdown-on-steroids Caleb. Most importantly, it means a little boy who loves unconditionally and is a light in the insanity that is our family's life together.

Autism Awareness Month 4/23 - Mommy Buddy From the Planet Autism - Blogger

Today's guest post is a special one to me. I wanted to include a post about the importance of the autism blogging community... My virtual support group... my friends... even my competition. 

My wife said to me "you have to get 'Mommy Buddy'" to write that one. So I asked her. 

Mommy Buddy is the most important part of this on-line community. She's in Texas, but knows EVERYONE. She is the key blogger to keeping us all together. She is the nicest person I've never met.

When I started this blog, I had no clue what I was doing (many can argue I still don't)... and this mommy buddy person kept sending me emails and comments like "love your stuff. I'm gonna' steal those red-heads of yours. Can I share this?" 

And then one day I get a message that said something like this "You have a great site. Can I help you make it better?" 

And Mommy Buddy did. For Free. Just because she wanted to help.

And she continues to be there for me. She is the glue that holds us all together.

When she was going through her IEP issues with the police (read her blog about it, it's a great story), my wife and I were trying to analyze the story and figure out what had happened to offer our support. I finally said simply "Somebody criminalized and made my friend cry... and that's just not right". 

I owe my life to this woman. I never would have remained writing if I didn't know her. 

Ladies and Gentlemen, answering the question of what is the importance of a virtual community to bloggers and autism parents, my best friend I've never met, I present "Mommy Buddy" from the planet Autism...

We truly love you. 

I remember back a million years ago, to the end of 2008 or so. My son was about 16 months and it was becoming obvious...he was different. He was so laid back and not at all demanding so it was easy to brush off my fears and say "He's fine. Boys are just less clingy right?"

Wrong.

These were the early days. My mother was pushing me to find out what was up with him. He wouldn't really respond to his name and wasn't talking at all among other weird things. His babble was this crazy alien babble and bar codes were like the coolest thing on the planet. Something was going on, but what?

"I just need something I can google!!"

My mother would chime over and over again.

Finally she usurped my authority and emailed Easter Seals. I'd like to say I was a graceful, proactive mom who called ECI myself about my 18 month old and my concerns, but no. My Mama did. He started services immediately, jan of 2009 at 19 months for speech delays. He soon qualified for occupational therapy and the A word started floating around. Again it was my mom who kept going back to it, while I tried to ignore it, like a buzzing gnat. I have to say my mom kept me sane in those days. I started getting google happy myself. It seemed like the only outlet to the HEAVY question mark that floated around my sweet baby boys head. What was going on with him??

In those early days I tried so hard to find people going through the same thing. Having the same fears. I know lables Get a bad rap but It's almost like a kind of purgatory not having one. Not knowing why your baby isn't like all the others. Feeling that crushing question mark permeating every aspect of your family's future, because let's face it, your mind will go to the worst possible place when given free reign.

I would write here and there when I found that the pressure was going to make me burst or pop some other much needed valve. We ended up lucky and only had about a 6-8 month wait to get in to see the developmental pediatrician. My sweet 27 month old BABY was given an official diagnosis of High Functioning Autism and Sensory Processing Disorder. I can remember after they told me, looking at me I guess waiting for me to break down. All I could feel was this inappropriate laughter bubbling out. That question mark was gone!! Albeit replaced by a puzzle piece but that at least meant a direction to move in, a group of people to seek out... Something to freakin GOOGLE!

After that, over the years I kept thinking about that awful time, before the diagnosis. That was the loneliest, most frightening time of my life. After that I would randomly meet a new parent, see the effects of the heavy question marks that had so recently been all over my face and end up pouring my heart out to them, knowing exactly where they were and just how hard not knowing was. I would describe our experiences and see how just hearing that truly helped. It made me want to help more.

It wasn't until 2011 that Mommy Buddy from the planet Autism was born. I would call Emerson buddy so much that one day he looked at me and said "Mama... Buddy?" He always seemed like an alien being, to be figured out, but bound to me, like i was supposed to be his liaison to the world and help him understand it. And vise versa.

So I finally had a place to compile all of my word doodles and observations in one spot, rather than lose sheets of paper that ended up as the back of scribble MASTERPIECES.

Over the last year and a half I have connected more than I ever thought possible. I had no idea Mommy Buddy would become my life line. I have met SO many wonderful people and formed REAL bonds. Whenever I see a brand new page start I feel overwhelmingly motivated to help them. Give them the opportunity others gave me, because I can see that they too are addicted to that feeling of need. NEED to help the parents still in that purgatory, still living shrouded in the worst fears for their child. And the ultimate feeling of community and FAMILY that comes from being a member of the "I love an Autist" club. Like any family we have our issues, we fight over things we all feel passionate about, but we support each other like nothing else. I'd say that is the very most unsung benefit after diagnosis. Our community makes me feel like I have an army behind me where ever I go and together we can truly change the world for the better.

Autism Awareness Month 4/22 - Anthology

Today's post is a collection of the shorter submissions I've received. Short, but no less brilliant. All three answered "What Autism Means to me" and did so brilliantly...

Ladies and Gentlemen, I present the anthology posts...

Lisa - Friend - school administrator

Autism means to me really cool kids that make my job endlessly interesting!

Myranda - Fan 

We are fairly new to the autism game.
What autism means to me? It means seeing the world completely upside down inside out and "raw". I see the world as my four year old sees it..... The beauty in a snail slithering across the sidewalk, touching every surface we pass and then the long discussions to describe the sensation on our hands. Eating dinner under the table, instead of " at" it when we go out to eat, even when others look at us in disgust..... Autism has comes to be a beautiful thing to me, its opened my eyes, taught me not to judge, helped me see all the rainbows, lollipops and happy moments, even in the midst of a meltdown. 
Autism is the huge hugs I get when he sees me after work, the look of pure adoration as I tuck him in at night, the super proud look on his face when he helps his little sister accomplish something. 
Autism will does not define us anymore, instead it makes us better, it has taught myself and all my children (15 on down to 2) the beauty of the world through the innocence of a four year old. 
It's tough, we climb mountains together, at times I think I'll go crazy, but its all worth it when I see that beautiful smile on my boys face. 

Wendy - Friend - Parent of one of Jack's besties

Autism to me means constant effort, undying dedication, perseverance not perfection, finding joy in the small things and keeping one's eye trained on what's truly important. Otherwise you'd go mad.

I see autism from an outsider's perspective. I look in on a family I love dearly and watch. I try to participate when I can, when I'm asked, when I hope it will be helpful. But I know I cannot ever know what it is truly like to live with autism every day, all day. What goes on in his head? Or in his mother's or father's or sister's? I can imagine, but I cannot know.

I feel their fatigue and I yearn to give them my strength. I feel their frustration and I want to give them my peace. I see their despair and I want to give them joy.

But you know what? They don't need that. They are human, they falter, they tire, but they always, always pick themselves back up and start again with renewed vigor and love. They are the strongest, bravest, most compassionate family I know and I am a better person having been allowed to be around them.

Autism Awareness Month 4/21 - Autism Mom Diaries - Blogger

Aggression is something that most of us special needs parents have, or will have, dealt with at one time or another. One of the biggest worries some of us have is simply "what happens when he gets bigger than me?". That is a difficult and stigmatizing question to ask yourself... and even harder to answer from others. 

We're trying to expose and discover new voices or under represented voices of autism in the Autism Awareness Month project. 

Jess at Autism Mom Diaries, a fantastic blog, was the only one who said she would tackle this question for me. 

And she bravely tackled what nobody wants to talk about.

Thank you, Jess. Check out her blog at AutismMomDiaries.blogspot.com and thank her for answering the question none of us ever want to talk about.

Ladies and Gentlemen, I bravely present Jess at Autism Mom Diaries...


My son is aggressive.*

I don't mean he's rough and plays football.

He is aggressive towards the cats, family, peers, even me.

He'll chase and trap the cats. He'll punch a peer he feels offended by. He punches and hits us when he reaches a breaking point. He makes verbal threats.

He simply reacts.

My son is self-injurious.*

He'll try to choke himself with his hands. He'll punch, scratch, and hit himself in the face. He'll bang his head off the wall.

He loses control.

He doesn't do it on purpose.

He doesn't know what else to do.

He reacts on instinct.

My son is destructive.*

If he gets angry enough, he's like a small tornado. Cushions, books, drawers, toys, anything he can touch can and often will go flying.

He doesn't know he's doing it.

He can't help himself.

He isn't doing it on purpose.

It isn't until the wave is over that he realizes what he did, starts to cry, apologizes, and tells me how out of control he feels. How he wants to be better. How he wants to control his behavior.

He'll ask for help.

Then with tears in his eyes, he'll start to clean up the mess.

He'll want a hug. He'll want a kiss. He'll want to know that his mommy still loves him.

I do still love him. With every fiber of my being. He is my little boy. I am his Mommy.

We adjust. We adapt. We overcome.

*Authors note: At no time is my son or anyone else in any danger of serious harm. He is constantly monitored. If you follow my FaceBook page or blog at AutismMomDiaries.blogspot.com then you know we receive several services to help him/us out. One of those services is available to us 24/7 whenever and wherever we need them. He is kept safe from any harm or danger.

This is not a total reflection of our lives either. More often than not, we are smiling, laughing, and sharing. He is the most generous and loving child and I could never ask for anything different. He is my son, I love him dearly, and I am honored and proud to be his mommy.

Autism Awareness Month 4/20 - Sheri - Fan

Today's post comes from a fan. Sheri is a mother of two boys (12 & 8) from Gig Harbor, WA. When I asked her to describe herself a little bit for all of us, she sent me back this:

Above all else, we try to spread the message of inclusion and acceptance. Compassion and understanding, and we are blessed to have an amazing Village helping us raise them.

Inclusion and acceptance, compassion and understanding. 

Indeed.

Ladies and Gentlemen, I compassionately present Sheri...

April is Autism Awareness Month. April 2nd was World Autism Awareness Day.  It's gotten me thinking about how I am aware of Autism.  I know, I know it seems silly but a mere 5 years ago I couldn't have told you much about Autism.  What a change a few years makes.  I give you my "awareness" items:

~ There is a saying within the Autism Community that "if you've met one person with Autism, you've met one person with Autism".  Yes, many people with an Autism diagnosis share the same traits, but like every person on the planet no two are the same.  I have learned that I am not an expert, and I intentionally shy away from anyone who claims they are.  Don't get me wrong, there are many who are far more educated than I am on the topic but to call someone an expert, to me, implies they are all knowing.  That is not true.  The mind is an amazing, complex, confusing thing.  I have yet to read, hear, or learn of anyone who is truly an expert when it comes to Autism (in my opinion).

~ Autism is not my fault.  This is important.  It has taken time, years, for me to learn this fact.  It is not my fault my son has a diagnosis of Autism.  It is not because I allowed him to be immunized.  It is not because I did something while pregnant.  It is not because I wasn't healthy enough, or rich enough, or religious enough.  Do I think there are contributing factors?  Absolutely.  Do I think there is a genetic component?  Yes.  Do I wonder if my son was pre-disposed to developing Autism after being vaccinated?  Maybe.  Do I have a theory that it has something to do with our environment?  Perhaps.  But, bottom line is, it is not my fault.  God gave us him, and him us for a purpose.  That I am sure of.

~ I am now aware that every person I come in contact with has a story.  Every. Single. Person.  I admit, I was very judgmental.  I didn't know it at the time.  I thought I was always a good person, a nice person, but my heart and soul tell me different.  I would without a doubt, let judgemental thoughts in my head.  Please don't get me wrong,  I am FAR from perfect now, but I am at least conscious of it.  I hear that voice in my head and often remind myself that they have a story.  This is one of my favorite lessons so far.

~ Lights make noise, and dance, and flicker.  My son has taught me that.  Every environment has a smell, sound, a "life" of it's own.  I am constantly on alert for triggers.  I don't even realize I'm doing it.  I can feel his anxiety build.  As if he is gripping my arm, I can truly feel it.  

~ I am aware that there is nothing embarrassing about wearing your Halloween costume to the grocery store in July.  Or rubber boots with shorts.  Or striking up conversations with random people on the street.

~ I have become aware of frogs and snakes.  Of dinosaurs, and lizards, and monster trucks, and WWE wrestlers.  I have become aware of Minecraft.  I have become aware of the Periodic Table, and Greek Mythology, and Chinese Warriors.

~ I am aware of how lucky I am that my son has words.  So many beautiful souls who share the same "label" as him do not.  I have also learned and become aware that not every emotion can be expressed with words.  Sometimes you have to yell and scream. Sometimes you have to jump, and flap you hands, and just laugh.

~ I am aware that I am strong.  I am smart.  I was meant to be the woman to be chosen as his Mother.  I cannot tell you why, but of this I have no doubt.  I have a lot to learn and I am far from perfect, but I am the best Momma for him.

~ I am aware that a diagnosis, a label, does not define someone.  My son is not defined by his label.  My son is smart, funny, kind, empathetic.  My son is amazing.  He will do amazing and incredible things.  

I have become aware of the fact that cliches ring true.  They really do grow so fast.  When in doubt, pray (or meditate).  Laughter is the best medicine.  Actions speak louder than words.

....and that he is aware of Autism everyday, but he likes Chicken Burger Tuesday better.