Autism Awareness Month & How I got here

Last April was our first Autism Awareness Day, month, year...We received our sons diagnosis of living with autism right before Christmas Dec. 2008. So welcome family, friends and newly diagnosed ASDers!
Before I move on I am going to address a situation that has fire stormed through the Autism Community, a little blog from a woman who goes by Smockity Frocks. if you search for her name you'll come across the cached version of her blog (love the technies who did that!) because she took her post down. Before I address her comments let me give you a little background...
I am the third of four children, My oldest brother was born with severe cerebral palsy, My parents bucked the tradition (which I found out later horrified a set of my grandparents) and raised him at home with the rest of us hellions (we were trust me). I grew up with people openly staring, muttering or outright saying things to my parents, brother or he rest of my siblings; I grew up with Doctors telling us every year my brother was going to die (he's 44). I grew up in a house of love, understanding, compassion and understanding the great gift of life. I have always been an advocate for special needs. My parents taught us not to judge but to offer assistance. We might have been hellions, but we had manners and offered to help others. For awhile we lived in town, on a street with many other disabled kids, I thought every family had one. Then we moved I found out most people wanted no part of "different". I remember my junior year in high school I was out with members of my swim team, when we ran into a mother with 3 kids, 1 child just having a complete meltdown, the mother was trying to calm the child ( I now know the immediate signs of autism, but not back then) I saw my mom with us four and my brother having a fit because his schedule was interrupted. The other kids were laughing and saying she needed to control her kids (the other 2 were quietly picking up spilled packages & purse). I did what was natural to me, I offered help. The woman asked if I could escort her two other kids to her car while she carried her son. I introduced myself and the kids walked next to me while we walked to her car (about a 10 min walk). The kids were 5 and 7, their brother was 3. My teammates literally were stunned and just stood around waiting for my return. The mother thanked me so many times. I explained that I had seen it before, I understood, really understood and hoped the day got better for her & her family. When I returned to my teammates that asked how I could that, I asked how could you not?
So as the world turned and I grew I older, I married had kids and received my child's diagnosis of autism.

Dear Smockity,
I'm sure you have never encountered a child that was different than yours before. I am aware that most of the population of the US does not know the signs of autism or other development delays. (though for 1 child in 110 to be diagnosed, your town must only have 100 people in it). I'll try to keep my sarcasm to myself as much as possible, kind of how you kept your humanitarianism to yourself. I have seen the looks and the thoughts flitter across people's faces when my son runs to me to tell me "that girl/ boy is crying, they are sad" and jump around joyously because they knew that. My response is "that is great I'm glad you knew that, what do we say to someone sad?"
a pause the fingers are flying and smile creeps on his face "are you okay?"; that is right, very good I respond" he dances in a circle and wants a bear hug. " Did you ask them if they are okay?" ; " No" he tells me then runs over to the person and gets within a millimeter of their face to look at their eyes and say "are you okay?" then runs away to me to tell me. We clap and high five and give bear hugs. It has taken 18 months to get here and no one, not you, your friends or others like you will take away our accomplishments!!
I had one parent on an occasion like this ask me why did I praise him over and over for him for that feat. So I told her " my son lives with autism, he does not understand facial gestures, emotions we've had to teach him what most people learn naturally. He has problems socially, and being able to do social activities, but he has other strengths - he's know all his planets, descriptions, order, and other facts; he knows over 40 country flags on sight. Most 3/4 year olds do not know those. So this is a big thing in our world, he recognized an emotion and reacted appropriately". The other woman looked at me and smiled," Well then congratulations to him and we hope to see you here another time.. by the way your child was the only one to ask my daughter is she was okay (there were 10 other kids, 10 parents there that day).
So you see Smockity, our kids, siblings, aunts, uncles and friends who are different do feel and can be hurt. Do you understand what your blog did it hurt the parents, friends, families who have been in that family's shoes or hope their child will be to that point one day. I regret the anger and malice some shared with you, but understand you ripped off some pretty tough scars. Thank you for your apology, but what I wish for most is your understanding and your awareness. Yes you set off a fire storm, but use it like I am to spread awareness, not just of autism but other disabilities, teach your kids, your friends and your subscribers.

Happy Autism Awareness Day,
Jenn

A Women who saves lives everyday!

A women who I have always thought was an incredible technologist is Stephanie Louise Kwolek. Kwolek has received numerous awards, including the Kilby Award and the National Medal of Technology. Most recently, in recognition of her own pioneering career and her encouragement of the next generation of innovators, Stephanie Kwolek won the 1999 Lemelson-MIT Lifetime Achievement Award.She is recipient or co-recipient of 17 US patents.
Relying on experience and instinct, Stephanie Kwolek invented one of the modern world's most readily recognized and widely used materials: Kevlar®.Kevlar® is best known to the public as the material from the which bulletproof vests are made; and in this use alone Kwolek's discovery has saved thousands of lives. In fact, Kevlar® has dozens of important applications, including radial tires and brake pads (a replacement for asbestos), racing sails, fiberoptic cable, water-, air- and spacecraft shells, and mooring and suspension bridge cables. It is now used to make skis, safety helmets, and hiking and camping gear.

Thank You Stephanie Kwolek for opening the doors for women and for saving lives!

Tomorrow is Talk Like a Pirate Day!

My pirate name is:

Dread Pirate Kidd

Like the famous Dread Pirate Roberts, you have a keen head for how to make a profit. Even though you're not always the traditional swaggering gallant, your steadiness and planning make you a fine, reliable pirate. Arr!

Get your own pirate name from piratequiz.com.
part of the fidius.org network

Where is Duncan?

..that is what Moira kept asking as we headed into this house this morning at 8AM.
We had to put Duncan on the bus this morning, a school bus to take him to special needs preschool. We tried to prepare him, we talked about it, we bought and read books; we went to school and met his teacher (she's awesome) and explored his new classroom. For all these things my little 4 1/2 year old held my hand, sat in my lap and hugged me. I am not sure who was comforting who...

Going to the special needs preschool is the right thing to do, my head tells me so; my heart says he your little boy - do NOT send him alone on a bus!!!!!!!!!!!!!!!!! Unfortunately or Fortunately (depending on perspective) Jamie will be sending Duncan off most mornings. I've done the drop off at daycare/preschool with both Duncan & Moira and the first day is the hardest thing to do, Until I put Duncan on the empty bus (except the driver).

Duncan is a big kid, most people think he is 6 or 7 years old - when we went to visit his new teacher we ran into a Kindergarten class (he had 2-3 inches on all of the kids). So my big boy wearing size 6 looked so small and fragile when he put on his school uniform this morning. He kept hugging me and saying "it's okay. it's alright". I am not sure who was comforting who...

He finally broke into a smile waiting outside for the bus.. it was short lived once he sat down and seatbelted in. When Moira said goodbye, it broke my heart, he realized we were not going to take this most important trip with him; that look haunts me this morning. He hugged Froggy close to him and watched us out the window. As he pulled out of view I cried... I am relying on his inner strength today, I know it's there it shines past his autism, to push forward and understand that we are here always and we love him! I hope he finds his new classroom and big adventure and makes new friends.

Autism does not keep him from adventures, it brings him to new ones. Power on Green Duncan and go forth and conquer your new school, but don't look at Mommy for a minute she is looking for her Green Lantern ring to give her strength!

.. so to answer you little Moira "Duncan is going to school today, he's riding the bus like a big boy. He'll come home later today and share his new world with you"

The passing of a wonderful person

Susan, FatCyclist's wife, passed on last night. Send positive thoughts to http://www.fatcyclist.com.

She is Gone

You can shed tears that she is gone

or you can smile because she has lived.

You can close your eyes and pray that she’ll come back

or you can open your eyes and see all she’s left.

Your heart can be empty becuase you can’t see her

or you can be full of the love you shared.

You can turn your back on tomorrow and live yesterday

or you can be happy for tomorrow because of yesterday.

You can remember her and only that she’s gone

or you can cherish her memory and let it live on.

You can cry and close your mind, be empty and turn your back

or you can do what she’d want: smile, open your eyes, love and go on….

Anonymous

What my Autistic Son has taught me

Autism is a part of a person it does not define a person! So in our fast paced lives, our children teach us many things, sometimes you need to stop and think about the lessons. So here are some lessons that Duncan has taught me:

1). Don't dwell on what someone has done to you...live in the present (the here and now!) - this one can be hard to do, but Duncan re -enforces every day; the least I can do is try!

2). He takes things literally - make sure you phrase your ideas, wants, appreciation in a form he understands! - take your time before saying something so your are understood.

3). Stop and view the world differently - You'll appreciate it more. When is the last time you looked at a water tower and thought - that looks like a robot!

4). Some days unpredictability is the only predictable thing!

5). I am overwhelmed please take me some place peaceful - learn to see this in yourself and to find your inner peace or place to go to gather your thoughts.

6). I want to be social, I just do not know how. - Most adults do not know how to be social. Take the time to assess the situation and identify the proper opening or angle to help you or your child enter a social situation.

7). Kids are not stupid - Duncan's school friends and other closer friends (even his soon to be 2 year old sister) know he is different and reacts/ acts differently in situations. Address his siblings, extended family, school mates, friends; embrace his uniqueness; the kids do! I watched Duncan's classmates redirect him, make sure he was involved in the group and make sure he got his tasks done... better than I some days.

I know there are more but today this is what I recall

Thoughts to both my Children

The song was playing one day shortly after Duncan's diagnosis of living with Autism. It not only applies to him but Moira as well. Thank You Josh Groban for helping me express myself:

You Are Loved (Don't Give Up) lyrics

Don't give up
It's just the weight of the world
When your heart's heavy
I...I will lift it for you

Don't give up
Because you want to be heard
If silence keeps you
I...I will break it for you

Everybody wants to be understood
Well I can hear you
Everybody wants to be loved
Don't give up
Because you are loved

Don't give up
It's just the hurt that you hide
When you're lost inside
I...I will be there to find you

Don't give up
Because you want to burn bright
If darkness blinds you
I...I will shine to guide you

Everybody wants to be understood
Well I can hear you
Everybody wants to be loved
Don't give up
Because you are loved

You are loved
Don't give up
It's just the weight of the world
Don't give up
Every one needs to be heard
You are loved