Tuesday, March 2, 2010

I Am Autism....

It is often hard to explain Autism to people because EVERYONE knows about it, but quite honestly, unless you know someone WITH it, it's really hard to describe. There are also lots of myth's and preconceived notions about Autism.

Here are some thoughts I had from my son's point of view.

I am blonde, beautiful, and happy.
I am two years old and love circles.
Don't bother arguing with me that two is too young to be diagnosed with Autism..
my Mommy took me to the best.

I may repeat your words but I don't really "Talk.". But I am not stupid.

I am a sensory seeker and love rough play..but don't assume my friends will. We are not all the same.
I am Autism.

I will scream when you cut my hair, take away my puzzle pieces and turn off Baby Einstein.
Sometimes you may leave a room and I won't notice.
Sometimes I will...and proceed to tear it apart until you return.
I am Autism.

You will get dirty looks from strangers who think I am just a bad kid having a meltdown and
you stink as a parent.
Go ahead..give them a dirty look back...I'm too busy having a meltdown to notice.
I am Autism.

I will eat bananas on Monday.
But not on Tuesday.
I may try the juice you give me...
but only if its red...
and in a green cup...
or I may just throw the darn thing down and fuss.
I am Autism.

I may sleep great, but  my friends may not.
Potty training may be a fantasy...
Simple errands may drive my mommy insane...
I am Autism.

But despite all that...
I am a child, and "A Person is a Person, No Matter How Small"
As Dr Seuss says (and I like Dr Seuss.)
I do love you, I do need you, and I do miss you when you're gone.
I may not run and hug you (or I may!) and I may not say your name,
but you know I'm in here, waiting for you to help me come out.

And I know you love me more than I will ever know.
I know it by hugs, kisses, and that we try it all again the next day.

We'll try therapies, we'll try games, toys, books--everything "THEY" say to do.
I'll try it all with you Mommy, because I know you know,
I am Autism.

And that is okay!

Mommy here now...

I am 110% thankfully every day for my life. Eli is extremely high functioning and I remind myself that is a huge gift. He is not dying, he does not need surgeries or meds, and he DOES hug me, love me and look at me.

But some days those blessings are a curse. How can a child who can name colors, not say Mommy? How can he not call my name, his dad's or his brother's? How can we do a puzzle in peace, but when we go to the store we MUST go get a banana so he can hold it through the entire store? Why are some of the simplest tasks the hardest, but then the next day they'll be a breeze? How do you make sure your other more 'typical' child (with issues of his own) is given the same attention as his Autistic brother?

People have asked me, are you sure you're done having kids? When I say yes, and they ask why, I reply, "I have one son with sensory issues and one with Autism". They often say, "so?"

Obviously those people have never spent any reasonable amount of time dealing with even a high functioning Autistic child. They have never had to wonder, will I be able to potty train my child? Will he function okay in school? Will he be able to work one day? Those questions don't go through most people's minds because at first glance, Eli is adorable, he says colors and shapes and he (most of the time) listens to simple commands.

But for the good days there are bad, and sometimes it makes me think. I know I do the best I can, and I have faith he will continue to improve. But the downside of him being high functioning, is it's easy to forget that we STILL need to "fight" for him to continue to grow..it's easy to become complacent. Going to the grocery store, park, bank or what not should NOT be a drama..but it is...and until the day it isn't...I will keep working...fighting for the 'real' Eli to keep coming out.

I hope this makes you think again about any Autistic children (or any special needs) children you may know. Please don't ever judge these families until you have walked a mile in their shoes. And just because it LOOKS like a mom may have it all under control...it could be an act... maybe you can just lend a hand...hold a diaper bag...make a dinner...do SOMETHING for a mom who needs a helping hand.

Thanks for letting me vent my friends! :)


~~Sew Happy Designs~~ said...

Thanks for showing us into your soul, Amy. You are a brave and wonderful Mom and you make me proud to call you friend.

Jewelled Trellis said...

You are a strong brave woman. You fight the good fight every second, every minute, every hour of every day and I applaud you for it. I'm honored to count you among my friends.


Robyn ~ JewelledTrellis

Sandra La Knitalian said...

Amy, that was beautiful, thank you for being so brave and taking time out of your day to shed a little of your world's light on ours.
Some are just so busy being judgmental know it all's, we don't realize others may be working twice as hard and doing something bigger than we could ever imagine.

You are most blessed because of the gift of your boys.

Eli loves you in a way only YOU can feel, and you know it, don't ever loose sight of that. Your Eli has so much more to give you in return.

You are a brilliant Mommy-Eli is a lucky little boy.
I'm glad I read this. It brought a tear to me'eye. I edited the hell out of this, went too far sometimes, reminded myself, you don't know me from Adam (who's Adam?)

I just wanted to say... BIG HUGS, Blog Mom! Keep up the good work!

Imma Sapp aka Mommy of 4 ♥♥♥♥

PS: Circles are good, they are consistent. They are not random. no beginning, and no end, less confusing. Am I getting close? :D

Stitches In Cotton said...

You are an amazing mommy and friend. I can really understand how you fell and can relate to the dirty looks and the questions.
It doesn't matter if everyone else understands or not. You are doing a great job and Eli is doing great. Although he is not "typical" he is a joy to be around and we really enjoyed spending time with him.

Sherry said...

I have been following you for a bit. I normally do not leave many comments but I needed to do it today. I work part time at Toys R Us in Canada ( I could not see where your from) On March 1 we started to raise money and awareness for Autism this is the first year we are doing this so I have trying to learn about this so when I ask for donations and can also help with some awareness information. Would you mind if I could copy this blog and bring it into work to help others understand Autism. If you could please let me know if it’s OK with you. Thanks for the great info and when I do go back to work I will be more confident and not be so afraid to ask for donations for this special organization.

Rogue de Plume said...

Oh Amy! I'd give you a hug if I were there right now. You are a brave and strong woman, loving mother, and have the patience of a saint.

It's not easy watching your child struggle with simple tasks or watching him succeed at something one day then be unable to do that same thing the next.

Thank you for sharing, thank you for being brave, and thank you for being an inspiration.

TiLT said...

Now that you have me in tears...that was so well put.

I know there are days that I just begin to wonder what more I can do. When it seems like no one else gets why a trip to the store can be so tough or why dinner time can be dreaded - I know I am not alone. These sweet adorable intelligent boys are so worth every moment...even when those moments are confusing & frustrating for Mommy.

The day Wyatt called me Mommy - he was almost 3.
Now he's almost 5 - speaks in paragraphs - can look at someone for more than 3 seconds - melts down less & less - and is now trained during the day. It is amazing how our kids can just burst into themselves.

Eli & his bro are two lucky little boys to have such a fab mom who fights for them & loves them so :) ...And doesn't bother fighting when the people aren't worth the time & energy :P

Amy said...

Yes, everyone may share this with anyone they'd like! The more that people are aware of how different Autism is, the better!

jodie said...

You are Awesome Amy!!!

Pocketful Of Sunshine said...

My eyes and heart are full of joyful tears!!!!! Thank you for writing this a being such an inspirational voice for all us mothers with beautiful children living with Autism! ((HUGS))

rose AKA Walk in the Woods - she/her said...

Thank you for sharing your story and so much of your beautiful, insightful and strong self. Peace.

Merry said...

Beautifully said. You are definitely Amy the Awesome!

Katie said...

What a wonderful post. I agree with your point that you can't really describe autism unless you know someone with it. And your son sounds beautiful.

We have a 4yo on the spectrum and a 1yo who might be (too early to say for sure). I post from time to time about it on http://treatingautism.wordpress.com

:) ~Katie

starinez said...

Wow... That made me cry! I have a little girl born Dec. 13th 2007... She hasn't bin diagnosed yet but unless something drastic happens before november she will most likely be diagnosed then. Our Neurologist is just wants to give her a little more time but has already said he believes that she has high functioning autism. She stopped talking around 13 months... Didnt start again till around 21 months... Didn't point or give any indications she wanted or needed anything till after she was 2. Her first word was dada at 9 months and then when she started talking again she finaly started saying it at 22 months. I cryed so hard! She is talking alot more now and more and more people are not understanding why I still worry and have gone and seen soo many specialists... Well she's talking now they ssay... She's perfectly find... NO SHE IS NOT! U do not live with her everyday and see the many struggles she has over the simplest trivial things! Anyways, I could go on and on but i just wanted to say that im in the same place u are out children are almost the exact same age and seem to have very similar issues... I just wished I had the diagnosis and the support you do... If we get the diagnosis she will start school in January as well... If not then she might continue getting the twice monthly speech therapy and thats it.... we have had a lot of issues getting any therapy that she might need and our insurance costs 30 bucks per visit on some therapys but not all... we also owe over 1500dollars just from the last year just trying to figure out what was wrong! Thanks again for that post it was awesome! Trisha

Amy said...

Star, I totally understand. It is very hard when you ARE making progress and people don't see that if you stopped the therapies, stopped adjusting your life to their special needs, and stopped the diet changes, etc, that things would go back to the way they were. Thanks for your comments, I hope your little girl can keep on doing well!! There are awesome online support groups out there available. :) Amy

Liz said...

Hi Amy, I'm another AF seller and just found your blog today after completing the survey. I have 2 children, my 17 year old sweet, teen daughter with mental health issues and my 12 year old little man with a learning disability. My 13 year old nephew is also my high-functioning austic savant sweetie.

You have a way with words. This post has touched my soul. You write my feelings and what I want to tell other better than I can express them. These stubborn,careless, narrow-minded others (some are even family) who have often blamed me for my kids' outbursts/issues/stubborness/"bad behavior." I am going to print this and keep it by my computer, on my bathroom mirror, by my bedside table and my wallet, so that I can read your inspiring, encouraging words throughout my day.

Thank you for your honesty. :)Liz in Ontario, Canada

Amy said...

Thank you liz!! Every day has its ups and downs! Currently Eli is on hunger strike and wouldn't eat lunch..but tomorrow is a new day!! :)


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