Thursday, August 7, 2008

Beyond Ordinary: What has autism done for us?

The phrase "beyond ordinary" is a good description of our life as parents from the beginning of our journey. Our twins were born 6 1/2 weeks early and were diagnosed at delivery with Twin to Twin Transfusion Syndrome (TTTS). They had medical issues in the beginning as a result of both TTTS and prematurity, so they spent their first 22 days in the NICU.

The first year was a blur of sleep deprivation, double feedings, double diapers and double cuddles, but as first time parents, we didn't know any different! At age 3, BH and CB were diagnosed with autism and sensory integration disorder. At that point, I was pregnant with Little Bitty. He was diagnosed with autism & sensory issues at age 2.

The world of autism is all we know, or as someone else at 5MFSN recently put it, this is our normal. So for today I want to revisit the question, "What has autism done for you?" I posted about this a while back, but I'd like to share my thoughts again here.

- Autism has taught me that things aren't always what they seem, appearances can be deceiving
- It has taught me to look for the best in people
- It has taught me to appreciate every accomplishment, no matter how "small"
- It has helped me understand what is truly important in life
- It has taught me patience beyond what I thought I'd be capable of
- It has taught me to laugh, to find the humor in things because it helps me hang on to a shred of sanity when I've about lost it(ok, I'll admit it's debatable whether I even have a shred of sanity left anymore, lol)
- It has taught me how to be strong and advocate for my children
- It has helped me stay in shape (must be able to chase a running child at any moment, carry a kicking / screaming child from store to car without breaking my back, wrestle an uncooperative child into his carseat, you get the idea)
- It has taught me how to survive on very little sleep
- It has brought some amazing people into my life that I wouldn't have known otherwise

My boys have taught me:
- how to be more observant and to notice the beauty all around us in the world
- flapping and bouncing are actually great stress-relievers :) (go ahead, try it!)
- new ways to communicate
- if something doesn't work the first time, "try it again!" with a positive attitude (they never give up!)
- how to be yourself without caring what others think
- kindness doesn't necessarily require great social skills
- there's more than one way to say "I love you" and it doesn't always require words

My sons see the wonder all around us in the simplest of things, and they notice all the little details that most of us overlook. They see people for who they are inside and place no importance on the superficial things that so many people get caught up with. They truly see the world, and everyone in it, through God's eyes. They are extraordinary, and who would want to change that?

Read more Beyond Ordinary experiences at 5 Minutes for Special Needs.


Trish on August 7, 2008 at 7:29 AM said...

What an amazing list. I especially like that we celebrate every new thing they accomplish, no matter how small and that we learn to see love expressed in less obvious ways. You are an awesome mom!

Rebecca on August 7, 2008 at 9:09 AM said...

I love this list. Especially the part about how "I love you" doesn't always require words.

All 4 My Gals on August 7, 2008 at 9:28 AM said...

What a beautiful post. I hope people who don't understand will read it and gain some insight. HUGS

Anonymous said...

Oh, I love this, Danette! This post is packed with wisdom from start to finish and it is said just beautifully.

I have learned many of the same lessons and my life is richer for it as well. I'm so glad you joined in with Beyond Ordinary and shared these lovely thoughts from your heart :)

~Michelle @5MFSN

Anonymous said...

What a wonderful, beautiful, positive and touching post! I so often try to see the positive and embrace the uniqueness of my sons, but never thought to actualy list what this journey has taught me. I might have to do that!
I love the phrase "beyond ordinary". In my house we call it "not boring". :-)

Shannon @ Gabi's World on August 7, 2008 at 1:19 PM said...

I love this one "there's more than one way to say "I love you" and it doesn't always require words"

And I have had to carry Gabi out of the grocery and other stores on more than one occassion so I can sympathize! Although, I think I broke my back! on August 7, 2008 at 2:01 PM said...

Great list-- and thanks for letting the emotion and humor shine through!

Jenny on August 7, 2008 at 6:07 PM said...

What a beautiful list! Your boys do sound truly extraordinary! Thanks you for sharing this.

Anonymous said...

Have I told you lately how awesome you are? And so are all the boys and dh. And I say that with absolutely no bias at all. :)

Debbie @ Three Weddings on August 8, 2008 at 8:54 PM said...

I love that you are able to find the good in your boys and remain positive. Sure our sanity may be failing, but it's worth it. Thank you for giving some insight into your life!

danette on August 9, 2008 at 9:37 AM said...

Thanks everyone for your sweet comments, I was really touched by all of them. I'm behind on reading everyone else's entries (BH got sick Thurs night, he's feeling better today, yay!) but I'm on my way to read them all now, assuming I can facilitate a truce for the tensions rising in the living room...

Casdok on August 9, 2008 at 10:55 AM said...

Lovely list. Our children do teach us so much :)

Anonymous said...

Thanks for your example and thanks for the list. I love the "I love you" one, of course and "kindness doesn't necessarily require great social skills."

Anonymous said...

That was a great list. What a wonderful exercise to put things into perspective. Thanks for sharing.

Anonymous said...

Beautiful list. I don't know how I missed it. I could say, "Amen" to each item you listed...but I don't think I could have come up with all that without thinking loooong and hard. Thanks for the reminder! :)

AC on September 18, 2008 at 9:16 AM said...

OK - This list has inspired me to start looking for the blessings in our struggles with autism too. I will be posting a list about what Autism has taught me too... soon. Thanks for your encouragement!!!

Andrea Cook
Life of a Juggernaut

Floortime Lite Mama on June 5, 2009 at 12:13 PM said...

OMG I LOVE this list


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I'm a mom of three boys on the autism spectrum, 11-yr-old identical twins and a 7-yr-old. My husband is a SAHD.


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