Autism Awareness Month, Day 2...
National Autism Awareness Day:
If you are not intimately touched by autism become aware:
1:88 kids are on the autism spectrum!!
Patience, empathy and acts of kindness go a long way!
You bump into our kids in the store, church, parks, streets, school events...
Remember our kids are just like yours with feelings and stuggles and triumphs the same.
♥
Every year the Ohio State Fair marks a monumental moment for us... the home stretch of summer break. This year was no different... until we arrived there and then the twists and turns of the day lead to an unexpected turning point in our world of autism...
We were greeted by a procession of dozens of motorcycle cops blowing their horns with flashing lights... what was the big deal??
SANTA!
Sahara is obsessed with Santa (and I mean that literally). The past 3 weeks have been riddled with Christmas Carols, crafts and plans about how we now have a fireplace to accommodate The Big Guy entering the house Christmas Eve... never mind you it is the dog days of summer. This has left me wondering why we tell our children this lie.
Now once upon a time I thought this was a magical right of passage.
Anyways, let’s get back at the State Fair.
Each year we have a previous year’s experience to help measure our progress.... and HUGE MILESTONES were evident.
From being able to ride independently on rides as we stood on the side lines looking on just like the other parents ... to her exclaiming that she wanted to go on the Big Yellow Slide and The Caterpillar (junior roller coaster). What is so amazing about that? She asked for them before she saw them... which means she not only remembered the fair from previous years, but had the words to tell us.
Having more and more words coupled with receptive communication has been our biggest growth this past year (especially the past several months).
Words were sandwiched between every activity... but there we moments that reminded us that autism was still in our midst.
... like the time she refused to stop playing with the squirt guns at the water balloon game... the Carnie yelled, “hey kids if you aren’t going to play, stop touching the guns.” Of course Sahara didn’t understand his words muted over the back ground noises... so I quickly come to her defense, “she has autism and doesn’t understand you”. He huffs away, we move on.
.... or the time she ran across the bridge on an obstacle course and that Carnie yelled at her to stop running and when she didn’t he grabbed her arm and told her to go back and walk the bridge or she wouldn’t be allowed to come back on the rest of the day. I am hot, exhausted and snap, “she has autism". Then he gave me a look like ‘make her listen lady or else’ so I add, ".... I am doing the best I can.”
A few weeks ago I caught myself on numerous occasions saying in reference to her, “She has autism”, as a defense against perceived odd, annoying, or challenging behaviors. I wondered what message that this sent her? I remember thinking that I didn’t want her to use this label as an excuse and I didn’t want her to identify herself solely on this label and so I vowed to shift my language and beliefs. I obviously didn’t do very well with the oath at the Fair.
Each time this ‘defense’ came out of my mouth, I was left with a feeling of regret in my heart. And found my internal dialog was desperately trying to find an alternate way of responding (not reacting) to others frustrations, judgments, and demands on my child who IS EXCEPTIONAL BEYOND THIS LABEL!!
I realized at the fair that this is so much more about me than her... [or so I thought]. My daughter is good at teaching me huge lessons in life... patience, faith, trust, compassion, endurance, etc. This day was no different...
After using the bathroom, she washed her hands. As I looked down I knew that she was going to tear her wrist band for the rides off as soon as I saw it get wet... there was no convincing her to keep it on. She has sensory issues around water... so I knew the wet band was irritating her wrist.
Her dad and sister took off to go ride the big rides while we headed to the other side of the park to see if they would issue a new tag.
Honestly, I didn’t want to shelve out another $22 for a new wrist band and was panicked that they wouldn’t cooperate with my request. We arrived to the tent which was empty all except a middle aged man sitting at a table. He looks up and asks what I need and I blurt out, “My daughter has autism and tore her wrist band off when it got wet, can we get a new one?”
No Resistance.
No questions.
Just an understanding nod of the head.
He has her sit down and he repairs the band and puts it on her ankle over her sock to prevent further skin irritation... pretty sure he has done this before or perhaps he has a special child in his own life.
I am taken by surprise when Sahara starts to sob as we are walking out of the tent. I get down on my knees and ask why she is upset. Her answer punches me in the heart... “AUTISM”... I embrace her and we cry for a moment together... “I SAD!!”
“Does autism make you sad?”
A very clear articulate, “YES!”
“Do you want me to stop saying you have autism?”
She looks me in the eyes and says an even more articulate and clear, “YES!!”
I am floored... I don’t know if I should laugh or cry. On one hand, I am relieved she knows about the autism. Yet on the other, it is my own damn sense of insecurity and my Mama Bear reactions that most likely resulted in her awareness.... and she doesn’t like it... in fact, she said it makes her sad.
I always wondered when we would have “the autism discussion”... I never pictured it happening organically at the Ohio State Fair. But there it is.... “Yes, Sahara, you have autism... but no it does not define you. You are, can do and will become anything you so choose.”
So there it is... My 7 year old quasi verbal child just reminded me why I educate others that our kids are exceptional beyond labels... I have gone introspective and decided it really isn’t anyone’s business why my child has quirks... and really that IS my issue not hers. In her own way, she made it quite clear, that she is not defined by autism... she is Sahara Grace. And so, I move forward into our new chapter of our newly defined world within autism.
MAMAPALOOZA COLUMBUS SPRING FESTIVAL 2011
COLUMBUS, OH (5/14/11) - -
Mamapalooza Columbus, a regional branch of New York’s Mamapalooza Inc., is providing an empowering Spring Festival again in Columbus, Ohio. This fun mom-centered, family-friendly, indoor-outdoor festival will take place Saturday, May 14 12:00Noon - 6:00 p.m at WholeKids Pediatrics & Yoga,1335 Dublin Rd., Columbus, OH 43215.
The first 100 Moms through the gate will receive a re-usable environmentally friendly bag full of goodies, coupons and more! Attendees can take part in a silent raffle, delicious food, LIVE music, and visit a variety of vendor/informational booths.
Dr. Dhanu Sant, MD FAAP will be just one of the many presenters that will be focusing on mother and child issues. Other presenters will be Hiliary Frambes of Parenting.com & Mom Congress, Alissa DeRouchie of Sprout Soup, Eileen Clary of HandyGirl!, and Erin Giddens of Young Living Essential Oils.
Mamapalooza Columbus will provide a safe space for the children to participate in arts and crafts, a creative mural, sing-alongs, story-times, family yoga, face painting and The Columbus Fire Safety House. There will be a nurturing space for nursing mothers too!
The full line-up of many talented mama-musicians & bands that will be rocking the stage include Tenara Calem, Vanessa Prentice, The Ginger Lees, Wicks & Wonder, Columbus Women’s Chorus, Megan Cameron, Za Unit & The Angry Men, One80, The Mamas & The Papa, Jerry & The Hashbrowned Seagulls, Randi Mockensturm, Lost Hollow, Katanya Ingram, Joanie Calem and Elliot 12trees.
Admission: Adults: $5; Children: $1; Families $10
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I discuss why I value this project (HERE) and (HERE).
In short, I have a daughter on the spectrum that was not diagnosed until after years of pleading with professionals to listen. (I am certain that her gender played a role in the lack of attention to our continuous concerns.) I also recognize that females are underserved and represented in the presentation of the spectrum.
It isn’t that I ignore male issues on the autism spectrum; I just have a vested interest in female issues because that is my reality. My goal in supporting Autism Women’s Network is simple:
To get the support my children and I need on a personal level. And to globally help girls, teens and adult women (and their families) to get the support and education they need, to prevent abuse, and to promote early intervention for females.
So, how will this project help?
Project Overview:
The Autism Women's Network is unique in that it was founded by women on the autism spectrum. Our mission is to provide effective supports to autistic females of all ages through a sense of community, advocacy, and resources. AWN's Project FAIM ( F emale A utistic I nsight M entoring) workshops will be the 1st of its kind. We plan to set up 5 Project FAIM Workshops across the USA which will focus on qualities specific to females on the autism spectrum. Topics will include: peer supports, adolescence, adult life, relationships, vulnerabilities and successful communications. Project FAIM Workshops will include active supports and information for everyone (autistics, parents, educators, etc.) The participants will meet renowned autistic females whereby gaining valuable insight. We will secure the Autism Women's Network non-profit status so we can continue to provide Community Events, online Forum support & E-Mentoring as well as our AWN Radio Show.
Sharon daVanport, AWN executive director, told me that, “This campaign has put AWN in contact with dozens of organizations, fabulous community minded projects and wonderful men, women and children from coast to coast across the USA.”
Isn’t that exciting!?!?! Imagine how this will impact our autism community as a whole!!
Not only that, AWN has received 9 invitations (including me) to host workshops across the US!! “Most of the invitations have included travel, lodging, and offers of a place to host the events! AWN has almost doubled the number of workshops which the Pepsi Grant would have provided.”
Can it get any better? Well, yes it can…
Sharon said, “The grant funds we were allocating to establish AWN as a non-profit will be minimized. We've had another 501 3C step up and say that they will back AWN through the process of filing all Federal, State, and trademark documents to finalize our non-profit if we do not finish December in the Top 10!”
So it appears that AWN will be winners (2x over) at the end of December whether or not we finish in the top 10!
There are three ways to support this project if you would like to vote for AWN…
VOTE Daily:
(1) On Facebook ☛ http://bit.ly/akQc0P?
(2) Text 101500 to Pepsi at (73774)
(3) Online at: ☛ http://pep.si/eg1mOG
Dear DQ,
This open letter is to let you know that my autistic daughter was insulted, mocked and experienced defamation of character by some of your employees this evening!!
As I was placing my order, my daughter was ordering beside me as well. How ever cute that may sound (and in my motherly eyes it was cute as well as a huge milestone) it opened her up for abuse by your employees. Because of her infantile autism she has a severe speech delay and speech impediment. For the first four years of her life she was catatonic and we have worked tirelessly to pull her out of her inner world and integrate her into the community. Tonight your employees demonstrated that I need to work harder at educating the general populace!
Tonight as she ordered her ice cream next to me in her broken speech (which sounds like baby babble), one of the workers imitated her sounds in a mocking manner!! Not only was I stunned, but so was her 11 year old sister and father! When I announced we could hear them through the speaker, we heard them burst into laughter. No apology!!
When we pulled up to the window, they didn’t acknowledge the incident at all. I am my daughter’s voice until she finds her own, it is my responsibility to speak up for her rights until she can do so for herself. So I informed the worker that I heard everything through the speaker and that I would like to talk to the manager!! The worker did not deny the incident, and meekly said, “Sorry” as he closed the window. I informed the manager that my daughter is disabled and has a condition called autism. I explained to him what happened and he said he heard laughing but was not aware of what prompted the laughter… he apologized and offered me a 25% discount.
A 25% discount!! Is that the compensation for my disabled daughter being subject to humiliation?
The latest statistic published by the government is that Autism affects 1 in 91 children!! So, to you that means that every 91st kid who comes through your lobby or drive thru is going to be autistic! Your workers must learn not only basic etiquette and common courtesy, but tolerance for those with disabilities. Is it not bad enough we have to fight day and night for the rights of our children with the schools, doctors, insurance companies and politicians… but now with the boys at the local Dairy Queen?
What those workers did was nothing more than bullying and defamation of her character. I have already told many of my friends in the autism community about this incident and many have already said they are going to boycott DQ.
I would like a formal and public apology to not only my daughter, but to the autism community as a whole. And would like to know what DQ as an entity would like to do about this?!?!
Below is the location and information on the order ticket.
Susan Richardson
Dairy Queen
2580 Bethal Road
Columbus, Ohio
Date: October 13, 2010
AIA003984099311
Server 122 Jeffery
We have worked really hard at trying to integrate our six year old daughter who is diagnosed with Infantile Autism Spectrum Disorder into the community. We have come a long way, but have an even longer way to go.
One of the things I have done to help with this is to take her to the local public library for brief visits. In the beginning, she would run up and down the stacks… I can only recollect once that a staff member got coy with us. However, I believe it was because my older daughter was trying to catch her for me (which could have appeared to be horse play).
Like I said, we have come a long way! Today started off like a typical day for us… We returned our books and movies, and then said 'Hi' to the front desk manager as we headed for the computers in the children’s section. My daughter loves to play Freddie the Fish while I quickly get my reserves (less than 30 seconds). I usually put my stuff on reserve so I don’t have a need to go into the stacks. I then take them over to the computer checkout near the table she is sitting at. This gives her a little autonomy while I am able to get my task done too.
But, today I broke routine... I decided to get a few books that weren’t on reserve. My daughter was sitting quietly on the computer engrossed in her game just like she had in recent visits… I knew I had about 10 minutes before she lost her attention span (or so I thought.) I asked a librarian to help me find a book on pioneers for my other daughter. I was in a stack just 5 aisles over for less than 20 seconds … and she was gone! I even took a double take!! I spun around in a circle and she was no where in sight.
In an instant I decided to go immediately to the front desk, “I can’t find my autistic daughter…. She is 6 years old. I am going to the parking lot to look.” I can’t remember the librarian’s exact response but I am sure it was something like, “I know who she is… Go, we will look inside.” And then I was bolting out the door!!
I ran to the jeep and scanned the entire lot… she wasn't there. I was relieved for a split second, and then more fear filled me. As I ran back towards the library I saw a staff member at the door gesturing to me as if to ask if I found her. When I shook my head ‘no’ she hurried away!
As I reentered the building, I was amazed; every staff member had been notified and they were looking for her in the bathrooms, meeting rooms, stacks, under tables and even around the perimeter of the building. The manager told me to stay by the front door to be sure she didn’t get past us… I told her immediately, “She has on a red Hanna Montana shirt with a purple skirt and has short brown hair”. The next thing I knew I heard my words echoed by 5 people… “She has on a red shirt with a purple skirt and has short brown hair.”
Time was suspended as I watched the staff work together! I found myself thinking about that GPS Locator I got in the mail yesterday… it was still sitting on the charger. (Mental note to self: get that up and running ASAP.) Then my mind wandered to the worse scenario… so I told the manager I was going to go look in the parking lot again. She told me it was best if I stayed where I was at the entrance (the only way in or out of the building).
I took a few deep breaths to center myself and agreed. Then out of the corner of my eye I saw my daughter walking beside a staff member towards me….I ran to her as she looked at me like, “What?”
She had been sitting on the ground safely looking at videos the entire time. After I thanked everyone, my daughter guided me to where the staff member had found her. Apparently, while I was initializing a full fledge search for her, she had been innocently looking for a video to check out. She picked up her video, went to the check out counter, and then walked calmly beside me to the jeep as if nothing happened.
As I sat there for a few minutes, several thoughts came to mind about what I did right…
1) Instead of looking for her by myself, I went and got help. This was difficult to do. My urge was to run through the stacks and start yelling her name. However, when your child is non-responsive verbally this would have done us little good.
2) I gave the staff a description of my child. Due to sensory issues my child changes her clothing daily dozens of times. However, I am always keenly aware of the last change of clothing… just in case!
3) I didn’t panic. Again, when you have a special needs child this is easy to do. When I did begin to have racing thoughts… I remembered to deep breath.
4) I listened to instructions from the manager in charge. This is difficult to do when you are used to be the ‘driver’s seat’ with all aspects of your child. But, by listening to her I knew that one person was in charge and that they were following an obvious protocol.
5) I stayed at the entrance. There was no way she was going in or out of that building with out my knowledge.
(A special thank you to all of the staff at The Columbus Metropolitan Library - Hilliard Branch where I, also, host a monthly Autism Support Group.)
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