Autism Acceptance Month

April is Autism Awareness Month, or as we like to call it- Autism Acceptance Month.  So, in the spirit of things, I thought I would hop back on the blog.  It's about time.

We have come a long way as a family since Finn was first diagnosed with Autism at 19 months old.  I wrote about my feelings here on this blog.  I laugh at myself now when I look back and read that post.  It's almost embarrassing.  Six months later at Finn's follow up evaluation, things really began to sink in for me.  I wrote about my struggle with the slow realization that Finn had a disability, and how painful it was for me to come to terms with (you can read that post here.)  I often think about that last post, about how I could neither identify with the parents who fought against autism, nor the parents who celebrated it.  I just wanted to run from it.  I just wanted it all to go away.  I just wanted my baby to not have to work so hard for every damned thing.

I wrote that post nearly two years ago.

Since then, I can proudly say that I have floundered my way into advocacy.  Instead of running from Finn's autism, I am fighting for him.  Fighting for his rights as an autistic individual, fighting for an education and support system that works for him, fighting for more acceptance in the community, fighting to defeat stereotypes, and fighting for a future that he can be proud to be a part of.

But two years ago, like any parents who receive a medical diagnosis for their child, we went into "fix it" mode.  We tried many different therapies for Finn.
The regular stuff- speech, occupational, physical therapies, Hippotherapy (horseback riding), aquatherapy (water therapy), ABA therapy, Floortime, Exclusion Diets, and more.  I even went so far as to make an appointment with a DAN doctor (Defeat Autism Now), and didn't go through with it solely because the upfront cost of the labwork we had to do before the doctor would even SEE Finn was astronomical.  We went to the beach instead.  I will never regret that decision.

We learned a lot with Finn over the past couple years through all of these therapies.
And to sum it up, it's this:  Finn is different.  He will always be different.
And that's okay.
Finn really enjoys therapies that help him communicate more efficiently and participate in daily life more effectively.  He has learned to ride a bike, climb the monkey bars, and do the balance beam in physical therapy.  He has learned to feed himself with a spoon, draw with a pen, drink from a straw, get dressed, and give high fives in occupational therapy.  He is learning to communicate with an Assistive Technology Device in speech therapy.
He has not learned how to not flap his hands when he's excited.
He has not learned how to consistently look everyone in the eye when he's spoken to.
He has not learned how to speak with his voice.
He has not learned how to not be autistic.
And we have learned that that's all okay.

Accepting that Finn is Autistic doesn't mean that we have taken the lazy route.
It doesn't mean that we don't do therapy, or that we don't challenge Finn.
What it means is that we accept that Finn is a human being like any other human being, with individual needs and desires, and that means loving all parts of who he is.
Because without autism, he simply would not be our Finn.
We choose therapies now that help him be the BEST him, not a different him.

Finn has his difficulties, but in many ways I don't find them more difficult than I find his brother Cole's difficulties.
Cole is 19 months old and is developing typically.
When we take Cole to the mall, he never wants to leave the play place, will probably cry for a new toy in the toy store, and will eventually be bribed into submission with a milkshake.
When we take Finn to the mall, he never wants to leave the fluorescent "Sears" sign, will probably want to ride the escalator 10 times, and will eventually be bribed into submission by letting him run up and down the hallway five times.
It's not harder, it's just different.

What IS harder is forcing Finn to play in the play place when he really just wants to look at the Sears sign, or making him look at the toys in the toy store when for him it's more fun to ride the escalator, or giving him a milkshake as a reward when he hates milkshakes.  We don't force him to do the things that typical kids like to do because he's not typical.  But he is still, above all else, just a four year old kid.

It is not by accident that I became an advocate for Finn.  It's because of the voices of many autistic individuals who I have looked to for advice and perspective.  To name just a few:
the book "The Reason I Jump"- by Naoki Higashida
the blog "Emma's Hope Book"- by Emma Zurcher-Long
the blog "Ido in Autismland"- by Ido Kedar (to date the person I find most like my son)
the people at the Autism Self Advocacy Network,
and my cousin Blair, who wasn't diagnosed with autism until her mid twenties, but despite her many challenges, was intuitive enough to notice that a 9 month old Finn didn't like his hands wiped with a wet cloth but didn't mind having them wiped with a dry cloth.
She was my first window.
People who understood Finn, who identified with him, who thought like him, and had the language to explain him to me.
These people made me less afraid.
They made me realize that my he-man mama energy needed to be focused not toward fixing my baby, but toward fixing how the world perceives him.

Finn is fortunate to be growing up at a time where he has these fierce self advocates fighting for his rights and the rights of others like him.
He is fortunate that he goes to a school where- if he has trouble sitting still- his teachers recommend regular breaks to climb stairs and jump on the trampoline- instead of restraining him.
He is fortunate that he has family and friends who love him unconditionally, with cousins who include him and acknowledge him consistently regardless of his ability to appropriately respond.  (they are amazing).

But there is still much to be done.

He is still growing up at a time where innocent autistic kids like Neli Latson are imprisoned for almost five years, simply for waiting for the public library to open, and being unable to respond to police and trying to run away.  Read about his case here and recent conditional pardon (thank God!) here.

He is still growing up at a time where autistic children are murdered at the hands of their own parent, and the media portrays these murders as justifiable and inevitable due to the "burden" of having a disabled person in the family.  In the past five years alone over 90 autistic children were murdered by their caregivers.  You can learn more about the Disability Community Day of Mourning here.

He is still growing up at a time where school districts throughout our nation disproportionately refer special needs kids to cops and juvenile courts.  Read about the recent arrest of an autistic sixth grader here.

He is still growing up at a time where the majority of non speaking Autistic adults are unemployed, don't have resources available to live independently, and lose their supports after high school.

Historically we have had to fight horribly sad battles to prove that people of different races are equal, that people of different genders are equal, that people of different sexualities are equal, that people of different religions are equal.  We are still fighting these battles.
And now we need to prove that people with different neurologies are equal.
We need to prove that segregating individuals with disabilities from their typical peers and giving them a "special" education is not acceptable.  
We need to fight for inclusion and acceptance for all human beings, including human beings with disabilities.

Finn is one of the most wonderful and fascinating people I have ever met.  I know that doesn't count coming from me since I'm his mom.  But I really think that across the board, there is always so much more to someone than what meets the eye.
I hear a lot of moms say that they just can't wait for the day for their nonverbal autistic kid to say "i love you", and all the therapy and tears are with this end goal in mind.
But I have never once not known Finn that loves me.  He tells me every single day.
It's in the way his face lights up when I pick him up from school.
In the way he wraps his arms around me to snuggle before bed.
In the way he takes my hand and puts it on himself to say "hold me mama".
In the way he takes his little finger and touches my eye as he looks right at me and waits for me to say it.  And I do every day.
I love you, Finn.  I love every single part of you.

We won't ever stop fighting for your rights, for your voice.  One day we'll get it all figured out and you'll be fighting right along with us, for yourself, and for kids just like you.
Thanks for being patient with us.

Picky Eaters and Sensory Processing Disorder

Now that my baby is almost ONE (gahhh!) and finally sleeping, I hope to have some time to blog some more about topics that I have been steadily researching and reading about, even though I haven't had time to blog about them.

I am really hoping to post a lot more about autism and what I have learned this past year (so much!) but every time I start a post I find myself second guessing myself.  I am by no means an expert and every day I am reminded how much I don't know.

So for now, I decided to post about something that I do know a lot about, have had much personal experience with, and have also had some successes with.  And that is:
PICKY EATING, and sensory processing disorder.

This post is for parents of picky eaters, or picky eaters themselves- whether or not they have been diagnosed with autism or sensory processing disorders.  I hope that you can find my personal experience helpful, and perhaps some of our tips and tricks will work for you or your picky eater as well.

When I was young I was an extraordinarily picky eater. 
I ate mostly chicken nuggets, macaroni and cheese, cut up hot dogs, and fruit snacks.
Through high school.
This is not an exaggeration.

In addition to being picky, I also could not be around people who were eating foods that I myself could not eat.  For example, when my family was having grilled cheese and tomato soup for dinner, I couldn't even sit at the table.  I had anxiety attacks that I can vividly recall.  The sounds of people eating, the smell of the food, everything made my skin crawl and made me sick to my stomach.  Not just nervous or uncomfortable, but panicky.   Like ants were crawling all over me, and I couldn't breathe.
Knowing what I know now, I can say with confidence that I probably had an undiagnosed sensory processing disorder.  My extreme food aversion was not "the norm", even for a picky eater. 

It wasn't until I lived on my own in my 20's that I began to be able to try new foods.
And these were not, by any means, adventurous foods.
I'm talking like an orange, an egg, a tomato, pizza with pepperoni on it.
When I had to learn to cook for myself I began to try new things because I had control over how it was made and the texture and size of the food.  I could also eat at my own pace without any pressure. 

Surprisingly now, at 30, I can say that I eat pretty much anything.  I love spicy, ethnic foods like Indian and Mexican, and I'll try almost anything.  I hope this offers a little bit of hope for those of you who parent EXTREMELY picky eaters.  Because I really did grow out of it, and learned to manage my other sensory processing issues with maturity as well. 

As the parent of an autistic toddler, and a one year old who is already proving to be quite particular at the dinner table, I have been able to apply some of my experience as a picky eater into helping them manage better with new foods.

Finn started out as a GREAT eater.  I made my own baby food and he loved whatever I gave him.  As he grew up and could try new things he ate whatever we ate.  Chicken casserole, lasagna, indian food, salads, you name it, he'd eat it.  But as he neared two we started seeing him get more selective with what he would eat.  Once he got too big for a high chair we began to have a really hard time getting him to sit at the table for meals at home and especially at restaurants.  I had to develop some strategies to help Finn succeed socially at meal times, as well as help him to continue to eat a variety of foods.

We adopted a food rule, which is "You Have To Try It- But You Don't Have To Like It."
At home, Finn has to try everything that is on his dinner plate.

This is important- "trying" does not mean he always has to swallow what he tries.
Especially if he is trying something new, I am not going to force him to swallow it.
From personal experience, I can say that for a child with sensory issues, this is extremely detrimental and harmful.  If he will put a new food in his mouth and consider it, that is enough.  He can spit it back out. 

Another really helpful tip is- offer a preferred food immediately after the new or nonpreferred food.  For example, if Finn tries a bite of the new meatloaf, I will give him a goldfish cracker immediately after.  This familiar, crunchy texture is a welcome break from the softer, unfamiliar texture and flavor of the meatloaf.  In this way we have had a lot of success with trying new foods.  Finn will willingly finish his meatloaf as long as he can have a goldfish cracker after each bite.  Eventually new foods are successfully "adopted" into his repertoire and he will give up the familiar inbetween bite on his own.  He can manage his own plate, taking bites of texturally different foods at will, much like adults do.

Also, when we are trying new foods at home, Finn is allowed to get up and take a break from the table.  We try to create time constraints to these breaks.  I find that counting can feel a bit stress inducing, so a lot of times we will sing a short song like ABC's.  We will tell Finn "ok Finn, you can take a break and we will sing ABC's, and then when ABC's are over, we are going to sit back down at the table."  Now Finn has learned to self-regulate his own little breaks.  He will run into the next room, touch the spiky twigs and leaves on a plant, and then come back to the table on his own.

Sometimes Finn has a hard time just LOOKING at a food.  For example, Finn loves all manner of Italian food.  Spaghetti, lasagna, chicken parmesan, etc etc.  But sometimes he is visibly uncomfortable looking at it on his plate.  Since Finn doesn't speak, I don't know what it is about the food that is offensive to him, but I think a lot of times it is just the mushy and in-congruent texture without any definitive structure.  In this situation I will often put a familiar food in front of him.  He likes things to be about the same size, and he likes crunchy things.  Apple chips, grapes, chex, etc.  Then I will hold the unfamiliar food behind him, and reach around and give him a forkful of spaghetti from behind him, so that he doesn't have to see it before he eats it.  Of course I do tell him "Here Finn, now we are going to try a bite of ravioli"  Or whatever it is, so he is not caught off guard.  It is much easier for him to try it this way if he doesn't have to look at it.  A lot of times I still have to offer the first bite of his favorite spaghetti dishes this way before I sit it on the table for him, even though he will eat an entire man-sized bowl!  It's like he needs to be reminded by his tastebuds first that he likes it before his eyes will accept the food's appearance. 

For the last at-home food tip, I find that if Finn is not willing to finish his meal or is having a really hard time sitting at the table, a lot of times there is something else going on in his sensory world that is getting in the way.  In these cases,  I will let Finn leave the table, but I will leave his plate on the table and not offer any other snacks between mealtimes.  Nine times out of ten, Finn will go back to his plate and finish everything on it at his own pace. 

Now, for eating out.
Restaurant eating or eating at friends houses is a little bit different.
Sensory-wise, there is a lot going on, and there are a lot of unfamiliar sounds, smells, sights, and textures that Finn has to process.  Finn's go-to reaction in settings like restaurants is he has to MOVE.  He can process and filter what's around him as long as he can keep moving.  But obviously, this is not socially acceptable when you are supposed to be seated at a restaurant.
I have found that, for Finn, in order to sit still at his chair in a restaurant he really needs a book, a small familiar toy, or my phone to be able to hold in his lap while he sits. 
I tell Finn that this is what we call a "compromise".  If he can sit at the table while everyone orders their meal, I am happy to let him hold my phone to watch a youtube video or play a little game.   We compromise in this situation because I know it takes 100% of Finn's energy to sit still while he is being bombarded with new sensory information.  Instead of physically fleeing from it, he can focus his attention on my iphone or on his toy when he needs to escape.
When we go out to eat, I do order Finn a meal.  A lot of times it is a meal he hasn't had before, or a different variation of a meal he has had. 
When we go out to eat, our same rule applies.
You Have To Try It- But You Don't Have To Like It.
However, I have found that 9 times out of 10, Finn cannot eat anything on his plate when we go out to eat.  Even if I know he is hungry.

Through trial and error, I have found that it is not because Finn is unwilling to try, it is because his body and mind is completely consumed with surviving other things.  Sitting still at the table, being in a new and busy restaurant environment, processing all the noises, the smells of everyone's food, and the way everyone's food looks on the table.  For someone with sensory processing disorder, this all takes work and concentration.  He is trying so hard to cope with everything else that he can't bring himself to eat anything.  It's just TOO much.  Sensory overload.

I still try, but if he can't eat anything, then we bring it home. 
Once we get home, I'll put his restaurant meal on a familiar plate and put it on the table. 
I don't make him sit down (he has just survived sitting through everyone else's meal!).
I do encourage him a lot and let him take his time.
And in this way, Finn can successfully stand by our family rule.  He has always been able to at least try, if not finish, everything on his plate.

He still has his most favorite foods.
But as long as he is able to try new things, and feels comfortable around new foods, I think we are building a strong foundation.  I am confident that he will grow to try (and even like!) new foods as he matures.

I myself am proof that there is hope for even the pickiest of eaters.
Tomatoes and mozzarella are now one of my favorite things to eat- something that would make me cringe as a child and young adult. 
I still have never been able to eat a bowl of cereal with milk on it.
I still honestly have trouble sitting at the table with Billy when he eats a bowl of cereal with milk.
But I can do it now, whereas when I was young I really physically could not.

Hopefully when the boys get older they will be able to help make their own meals, and having control over how their food turns out will help them feel confident to try new things as well.  I hope that my experiences will help them become more successful eaters, and I hope that some of what works for us will work for you too!

Cheers!

**Side note-
Forgot to mention Finn has also had a lot of success watching little videos of kids trying new foods.  One of our favorites is this one:
https://www.youtube.com/watch?v=pEvhJKwxsZk

Sharing a Link...

How Do We Learn if We Don't Make The Effort?

I wanted to share this link to the blog "Ido in Autismland".

He has a valuable first person perspective on Autism, as he himself is nonverbal and Autistic.

Please read more about him, and enjoy his most recent article.

I hope it reminds everyone that just because someone doesn't speak doesn't mean they have nothing to say.

In the past three days....

In the past three days Finn has:

a) peed on the potty every day.
b) gone under water at swim lessons.
c) jumped off the diving board (twice!)
d) had his first dentist appointment with no tears and no special accommodations.
e) had his best day of preschool yet.
f) fallen madly in love with his summer babysitter.
g) said cheese for this picture "chuss!"

Folks, you're looking at a big boy.