Action, Acceptance, Awareness

Today is World Autism Awareness Day.

There's been a push for it to be Autism Action Day - awareness, some say is already there. Action needs to be taken.

Some are saying that it should be Autism Acceptance Day. That we need to embrace those with ASD and accept them as they are.

Can I just say yes?

YES- We need Action!  We need to figure out what is going on to make these numbers so high and we need to find the best possible support and resources for people with Autism Spectrum Disorders so that they can be happy and be able to work within society to the best of their comfort and ability.

YES- We need Acceptance! The world can gain a lot from individuals with autism. Think what Temple Gandin, Albert Einstein, Bill Gates and countless other people with Autism/Asperger's/ suspected ASD's have done. When we listen to these wonderful people and accept them, the whole world benefits.

YES- We need Awareness! I wish we didn't, but we do. Desperately.
While preparing to write this post, this popped up in my google search bar:

"People with autism are dangerous."
"People with autism behaving badly."
"People with autism are stupid."
"People with autism are annoying."

I felt sick to my stomach when I saw this. I feel like I might cry. Is this what the world thinks of my sweet son? Of the many kids and adults on the spectrum I have the pleasure of knowing?  This is absolutely unacceptable. Obviously there are some huge misconceptions out there about the Autism Spectrum and it has got to change.

So if Autism Speaks makes you mad - don't support them.
But please, try to do your part to make others aware.
One in fifty children have a disorder that our society is tragically misinformed about.
That has got to change. For those with ASD's. For those who love them. For all of society.
Because the future of a society so ignorant about 2% of its own population is grim.

Spread Autism awareness. People may know that Autism is out there, but there is still a lot of work to be done.

Undesirable Behavior and the Autism Spectrum

"Nooooooooo!" Keagan clawed at me from the grocery cart. 
He covered his ears and rocked back and forth. "No! Nooo! Nooooooo!"
He turned to Eden and smacked her. A young couple walked by, pointed and laughed. 
On the next row, a woman stopped, turned her cart around to watch the spectacle that was my son.
As I was trying to get him out of the door, someone commented about me "giving him too much sugar." 

All of the people watching us thought that Keagan was being bad.
And don't get me wrong, the behaviors are not fun to deal with.
I spent a record breaking hot summer in Texas wearing long sleeves to cover bite marks.
It wasn't fun. In fact, it was miserable, but he wasn't trying to be bad.

From sensory meltdowns, to communication struggles to misunderstandings due to poor "theory of mind," these situations usually have a root. Even when they make no sense, that's because this world does not make a lot of sense to him.

Kids on the spectrum can act out a lot. To an outsider this can look like permissive parenting, bratty kids etc.  But it is a lot deeper than that. When everything is louder, no one understands what you are trying to say to them and you just plain do not understand how you affect other people, it is hard not to "act out" by society's standards. But really, it's not that. They're just trying to be heard. To make others understand. Sometimes, they are just trying to find their voice and unfortunately, they find it in a scream.

One in fifty kids has an ASD. That means there are a lot of struggling families out there. If you are reading this and you are not affected by autism personally, please remember that things are not always as they seem.

(and yes, there are times when Keagan and other kids on the spectrum truly are just being a bit naughty. But the same can be said for all kids. Usually a breakdown in communication is the reasoning behind most "bad behavior" I see from him. Not simple disobedience.) 

Becoming a Warrior

When a child is born, so is a mother.

When that child has special needs, a warrior is born.

She may not accept her warrior role immediately at first she may be lost, scared and in denial. A fog may overtake her, heavy, thick and all consuming. But slowly, but surely she will break free. She will claw her way out of the fog because she has to go on. She is a mother. She has no choice. And as she is thrown into all that special needs parenting entails, she'll shed her previous skin and become a warrior. 

That might sound dramatic, but from the moment it becomes evident that a child has special needs like autism, the mother (and father, I do not mean in any way to downplay the role of the father here, but to avoid the pronoun game, I will just stick with "she") has to fight. She has to fight with a pediatrician who tells her she is overreacting. She has to fight to get evaluations, to find a way around seemingly endless waiting lists. When the evaluation comes back, she has to figure out how to move forward. 

Often she'll be given a list of doctors and therapies her child would benefit from. She then has to battle to get her child seen by these therapists. Be it driving long distances, fighting with insurance (always, always fighting with insurance. I think I can recite the Texas Autism legislation by now) and then there are more waiting lists and then there is finding the right fit. The doctor who sees the changes in her son. The occupational therapist who understands her daughter's struggles almost as well as she does. The speech therapist who can handle her son's meltdowns. She has to build a team and she will become the captain of  that team. She must be the strong one. It is imperative that she takes the lead. She can not take crap from anyone. She has to be the warrior.

Sometimes, she will hit walls. Her child needs help and no one is willing or able to provide it. Then she has to step up her game. She has to fight twice as hard. And she will. She will fight day in and out. She will do what she has to do. Because she sees not only the struggles, but the potential. She will not give up. 

She has to be a warrior at the park, ready to intervene if the bullying goes too far (and there will be bullying.)

 

She has to be a warrior at the grocery store , ready to deflect rude glances and handle snarky comments firmly,  but with grace.

She has to be a warrior for her child's education, battling the school district or taking it into her own hands and homeschooling. 

She has to grow an iron backbone because she WILL be judged. There will be 100 choices before her as to how to treat her child's needs. To medicate or not to medicate? Gluten free or traditional diets? Is ABA life saving or is it torment? Should she use biomedical treatments? She will hear many, many opinions and she will have to decide what she thinks is right. She will have to look at her child and fight for him or her. 

The day that she realizes she is  a special needs parent will break her a bit. Her heart and soul will ache for her baby. But she will heal. And when she does, she will be something stronger than ever before.

She will be a warrior. 

*This post is a part of my autism awareness series. See my previous posts here and here.

Happy Birthday, Eden

Four years ago today, I woke up early in the morning to use the bathroom. Being nine months pregnant at the time, this was far from unusual. I was experiencing some indigestion. Or what I thought was indigestion  When the discomfort moved to my back, I thought maybe I was having contractions. A few minutes later, I had a very strong, obvious contraction. About two hours later, I was holding my sweet girl in my arms, crying in my bathroom and kissing my new baby and my husband in amazement and wonder. Eden came into this world with a strong force that is befitting of her to this day.

 Welcoming Eden MaryAnn to the world. 

Her first year was a chaotic one for us - we moved several times, we were under a lot of financial stress, we were starting to realize that her brother was struggling in ways other kids were not. But all the way through, we found her sweet smiles to remind us of just how good we had it. 

By her first birthday, we'd moved thousands of miles from our lifelong home state of Washington and found ourselves living in the Dallas, TX area. 

Eden, as she's always done, grew and developed at her own pace. Her sensory issues kept her from actually swallowing solid food until about 22 months old. She walked late, at about 16 months. Then she took off. The same with the food, when she was ready, she was ready to eat anything and everything. 

As she got older, something became very evident:

This little girl has a style all her own. 

She has spent her four years walking a strange line between the cautious late-walker of her second year and the energetic sprite who surprised us with a quick labor. Eden does things her way and there is no way of knowing what that may look like until she lets you know. 

Happy 4th Birthday!

It has been an honor and a blessing to watch her grow and change. I can not believe that I am so lucky as to be the one she calls Mama. I don't know what it is that the future holds for this sweet and spicy little one, but wherever she goes, whatever she does, I know she will do it with her own, very special burst of life and energy, as she has since the day she was born. 

I love you, sweet Eden. Happy birthday. 

Sensory Processing and Autism Spectrum Disorders

 I am keeping my promise to blog about the autism spectrum as we approach Autism Awareness Day. While most people know autism exists, many do not understand it very well.

Something that often is greatly misunderstood about kids on the spectrum is sensory processing.

People on the autism spectrum interpret sensory input differently than most people (as do those with Sensory Processing Disorder, which you can have without having autism, though they seem to be closely related.)

A garbage truck truck driving by, the neighbor's obnoxious barking dog, an infant crying at the mall or a Justin Timberlake song played through the loudspeaker at the grocery store all can feel like an audio assault.

For a long time, the sound of clapping sent Keagan into a downward spiral that took him a very long time to bounce back from. We avoided anywhere clapping might happen for years to avoid a meltdown.

Often kids with ASD or Sensory Processing Disorder will go out in public with sound reducing earmuffs. They were lifesaving for us when we had to be loud places (like the airport, where no one wants to be near a hysterical child.)

Individuals on the spectrum are often bothered by certain kinds of clothing. That kid who never wears socks and is usually in sweatpants whose mother you silently (or not so silently) judge at the park? Maybe mama isn't lazy. Maybe the child has autism or SPD. Keagan spent the first 4 1/2 years of his life refusing to wear shoes other than rain boots or crocks. I know people, even some of his therapists judged my choice not to fight him on this, but he said that other shoes hurt him. I chose to believe him. I also saved my battles for issues more pressing than wardrobe.

Rain boots and shorts?! Not fashionable, but this

was a staple in our home for years.

People on the autism spectrum are often bothered by lights as well. I know Keagan used to scream at the sun when we got out of the car. He felt like it was trying to hurt him. Of course, sunglasses sound like a good solution  but he could not stand the way they felt on his face for long, so as practical as that sounds, it never worked out for us.

To complicate things further, a lot of people with autism also SEEK sensory input. Their system is a mess. Keagan's proprioseptive and vestibular systems are out of whack (did you know we actually have seven sensory systems? I didn't until I had Keagan!) This means he will seek out movement. He spins in circles, jumps up and down, rocks back and forth, kicks, stomps and is generally a whirlwind of movement. He also seeks sensory input through his mouth, chewing toys the way you'd expect and infant to do.

 The opposite can be true- Eden (who has Sensory Processing Disorder and possibly Asperger's) AVOIDS these movements because of a dysfunction of the same systems! Swinging, climbing and jumping all scare her.

Which leads me to something else - people on the spectrum can seem very, very different from each other. Because they are. There is a saying "If you've met one person with autism, then you've met one person with autism." There is a wide range in symptoms and abilities so please do not expect every individual you meet to be "Rain Man" or the Max from "Parenthood."

It is not just that these kids are sensitive or hyper - their brains literally take in information differently from the average person. The world is actually brighter, louder and scarier to them. They are not being bad when they meltdown. The world is just too much for them. So next time you see a child out in public "over reacting," please try to have more patience for them. If you see someone rocking back and forth or spinning in circles, try to understand that he or she is not trying to be disruptive. If you see a child dressed strangely  understand that their mother is probably trying really, really hard. The sensory aspect of the autism spectrum is really overwhelming and frustrating and it goes so much deeper than a child being "naughty."


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Because Autism Awareness Month is Just Around the Corner

I've heard some compelling arguments about Autism Awareness lately. That people  are already aware and that instead of awareness we should rally for change. For healing. For new research. And with the newest statistics showing that 1 in 50 kids has an ASD, I tend to agree that we need action.

But here's the thing. People may know that autism is out there, but a lot of people do not know what it really is. I am often met with blank stares when I tell people about my son's ASD. A lot of people have some idea that "autism is a disorder," but that is the beginning and the end of that knowledge. And that has got to change.

Each day from now until World Autism Awareness Day (April 2) I am going to share something about the Autism Spectrum. Readers, can you do me a favor? SHARE these posts. I know most of you are already educated. Repost these on your Facebook, on Twitter, Pinterest etc so that this information can get to those who do not know what living with autism is like.

Today, I will start simple and tell you this:
You can not see autism. 
While this may seem obvious, I often hear "He doesn't LOOK autistic."
Autism does not "look" like anything. You can't tell a person has an ASD just by looking at them.
Attractive people can have autism. Yes, my son is cute. No, that does not mean he is "normal." (Oh and don't use that word when comparing people with autism and people without it. Please. It stings. Besides, what the heck is normal anyway? A more polite comparison is "neurotypical".) 
Someone's outward appearance means nothing when it comes to ASD, so please don't judge someone who "looks normal" for acting odd. They may  have an ASD or any other number of "invisible" struggles. Please try not to judge anyone for the way they look.

So Much To Say

I've neglected this blog and I'd like to get back into the swing of posting.

A lot has happened since I was actively posting. The biggest being the birth of my third child, Aviel River eight months ago. Avi, as we call him, was born peacefully at home in July. He's a delightful little guy, and, as Eden said a few days after he was born, "Now we got our whole family!" Having this little ball of love around really makes the family feel whole.

All three kids earlier this month

Avi a few hours after birth.

Cutting the cord - photo by Deborah Frances 

In other news, we bought a house. I never thought we'd settle down here in TX, but it seems like the right thing for us for this season of our lives. I still miss the Northwest and the people there every day. I don't miss being sick all the time (mold allergies and asthma don't do well in WA) but this is home for now. It's been a lot of fun settling in and making this house our home.

 Getting rid of an undesirable light fixture 

 Mural in Keagan's room

Mural in Eden's room

We've been very blessed to have some artist friends of ours help out with the kids' rooms and they look awesome. I feel so blessed to be able to give them such happy spaces and to have such a great community here supporting us. 

Eden turns four this week. I absolutely can not believe that. She is such a funny little girl. Full of stories about fairies and ponies and bats. Yes, my sweet little pink-clad princess loves bats. She's a tad quirky. She wouldn't fit in with our family if she weren't. Though she's struggled some this year with Sensory Processing Disorder and had a potential Asperger's diagnosis unofficially thrown around, she's grown a lot and I am really proud of her.

Photo by Deborah Frances 

Keagan has never ceased to amaze me. This boy might struggle, but he also shines. He'd be in Kindergarten this year if he was in school, but he's spent the year reading Harry Potter, learning about ancient Egypt, the rain forest, birds, bats, botany and pretty much anything and everything. He absolutely loves reading Magic Tree House Fact Trackers and basically anything nonfiction. He's played both soccer and baseball this year in an all inclusive league and it has been so fun to see.

Photo by Deborah Frances 

Homeschooling has been an adventure. 

I am not one to throw labels on educational methods. I'd say we're too relaxed for the traditional homeschoolers and too structured for the radical unschoolers, but whatever you want to call it, we are having a great time. (Most of the time, we're human. We butt heads and we make mistakes and we don't spend too much time skipping through meadows singing show tunes) 

Some random homeschooling moments from the past few months: 

The kids LOVED studying ancient Egypt:

 

Eden Learned to write her name - unprompted - at three. 

 Shields from our Medieval study :

They made a mural during our Rain Forest study :

King Tut by Keagan:

Field Trip to the Capital building in Austin :

 We made bird feeders:

Keagan saw a homeschool blog recently and informed me that we needed to be blogging. So with his help, I will be updating this blog more often and sharing in our adventures. 

We've also had our share of medical struggles. Both big kids had seizures - Keagan is now being medicated for them. Eden, thankfully has only had the one so far. They've both had more therapy sessions than I could ever count,  most helpful, some hurtful (a blog for another day...) and we're working hard on exploring new avenues of growth and healing. When you live and love in a home with autism, that is a constant. It never stops, because what is working one day might just hurt the next. It's a mystifying realm that we've been set down in the midst of, but we're trusting God and praying for new answers all the time.

Avi and Keagan hanging out together while Keagan

underwent an EEG in late 2012

I look forward to getting back to blogging regularly and sharing my life with you all.

If you read, you'll get to see more photos of this handsome guy. 

Photo by Deborah Frances