AWN: Crucial support to women, teens, girls and families on the autism spectrum

The Autism Women’s Network (AWN) offers crucial support to women, teens, girls and families on the autism spectrum... please take a moment today to read this and take action to let them know that not only does the autism community appreciate their efforts, but so do others.

For the past several months I have posted a link on my Facebook and Twitter page daily for the The Autism Women’s Network’s chance to win a $50,000 grant to help females on the autism spectrum in the Pepsi Refresh Project...

While this is a very important cause to me, I am sure that it is probable that many of my mainstream friends roll their eye as I continue to ask for their support! It is even likely that many will be relieved to hear this will be the last month that AWN will enter this contest.

Over the past few months, by participating in the self-driven need to promote this project, I have been warmly accepted as a mother representing her non-verbal six year old daughter among this community of self-advocates. As my interest in this project strengthened so did my report with several of the women from AWN.

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.

This has already begun to come into fruition through the Pepsi Campaign…

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

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2 Year Anniversary: Reflections on Autism

Today is the 2 year anniversary of Sahara’s formal diagnosis of Infantile Autism.

I thought about writing about the huge accomplishments we have seen in the past 24 months… and let there be no mistake they have been huge!! We have left Catatonia in the dust!! Her speech, socialization, cognition, sensory, and every other facet of her being has exploded into this wonderful expression of life!! I am so proud of all of her hard work.

...Yes, we have come a long way, but we have an even farther way to go.

I thought about writing about the blessings I have found in the world of Autism… and let there be no mistake there are huge blessings. I have made friendships and have encountered opportunities that would have otherwise failed to exist. Read my list of blessings HERE.

...Yes, blessings are always there.

I thought about writing about the spiritual side of Autism… and let there be no mistake my daughter is more connected to God than I could ever dream of. However, I have learned to trust God more and that He trusts me even more than that.

...Yes, God is good.

I thought about writing about the fears I have endured over the past year… and let there be no mistake there are fears that I face on a daily basis; elopement, wandering, sexual predators, IEPs, civil rights, bullying, harassment…

...Yes, there are dark corners in my life.

I thought about writing about the struggles her sister has faced… and let there be no mistake that she had to face more in her short lifetime than your typical tween. She has had part of her childhood ripped away by this invisible monster called Autism that consistently puts her on the back burner.

...Yes, siblings have it rough.

I thought about writing about the strain in our marriage… and let there be no mistake there has been strain. The piles of doctor bills that insurance refuses to cover, the reduction to one income, and the never ending discussions about the never ending issues that circle our life.

...Yes, communication is key.

I thought about writing how the diagnosing psychologist was wrong is her prognosis… and let there be no mistake she was wrong! My daughter is talking, socializing and living a fulfilling life. She will go to college, have a career, a family and any other thing she so chooses to do.

...Yes, possibilities are limitless.

And as I thought about all of the things I could write, I realized that the most important thing to say today was that I would like to introduce you my daughter, Sahara Grace.

Sahara is six years old and just started kindergarten. She likes her teacher, follows directions well and declares that she loves school each time she gets off of the yellow bus. Sahara is funny, witty and even sarcastic. She loves animals, bats, watermelon, Curious George and Mr. Bean. She enjoys riding her bike, swimming and playing hide-and-go-seek. She has self determination, a sense of adventure and the patience of a saint.

Sahara’s best friend is her eleven year old sister, Emily. Not only do they share the common bond of sisterhood, they also share the passion for horses, dinosaurs, water activities, chocolate, the outdoors and just about everything else they venture to do; in fact, they are almost inseparable. Daily my daughters inspire me to be a better mother and person!

You can read more about our early journey (HERE) on the Autism Women’s Network.

I would like to conclude by saying that if you are a parent of a child that you think may be on the autism spectrum… you are not alone! Demand that someone listen to you about your concerns so that your child can start getting the services and care she/he needs. Then find a support group so you can get the care you need.

I have found that joining Twitter and Face Book to be one of the best things I could have done for ME. It was through a sense of community and knowledge that I was able to empower myself to stand up to the plate and become my daughter’s best advocate.

Read about the Signs and Symptoms of Autism HERE

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Open Letter to DQ... How my autistic daughter was abused by your employees

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 91^st 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

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Autism and Elopement: Finding A Sense of Hope

Wandering

Elopement

Running

Flight Risk

If you have a child on the spectrum these words might elicit strong emotions within you ~ No words can completely grasp the sinking sensation within your being when you cannot locate your non-verbal child!

I hear autism parents chuckle all the time that they are the only ones who lock doors to keep their children inside, instead of intruders out. It is true. If Sahara gets away from me (inside and out) she will not respond to the question, "Sahara, where are you?" We have resorted to chains on doors to give us some peace of mind... that is until she learned how to use the broom to unlatch the locks. She is not only intelligent, but cleaver!!

She has left the house at night once and it was horrifying!! But, it is just as alarming during day light. One time we found her in naked in a tree house near a neighbor's pool. Your stomach falls and panic fills every cell within you. You aren’t sure if you should run in to get the phone to call 911 or if you should start running through the neighborhood. (I have done both!) When your autistic child is non-verbal and out of your sight it is an indescribable experience!

There are horror stories in the news almost daily: Autistic Adult Missing, Austistic Child Found Alive in Swamp, Autistic Resident Found Dead In Van… these are the headlines that keep me up at night (and I mean that very literally)!! This is a constant fear in the recess of my mind and of the mind of many parents with children on the autism spectrum!!

In fact, just before I sat down to write this blog today, I read a news article from Wichita, Kansas where a 5 year old autistic boy was found in a neighbor’s pond, just 30 minutes after his adult sister noticed he was missing. He was in critical condition, but later died. Tragic!! I pray for this family as they go through the unthinkable!

And I pray for all other families that are on the spectrum facing this manifestation of autism!

This is the kind of story I shared with my daughter’s school during our last IEP meeting. I was attempting to make a case for a one on one paraprofessional for safety purposes (in addition to the academic needs). The school is situated near a busy road and there is a pond on the property. The teacher said, “Well, I know you have problems with that at home, but at school she has never tried to run.” Aside the obvious contempt and judgment within her statement, the fact is it only takes once for a tragedy to occur!!

I decided that if the school wasn’t going to cooperate with us, then we would take matters of safety into our own hands. I started researching GPS locators… they weren’t cheap! (Remember, hubby was downsized and we had had no income for 7 months!) So, I called my daughter’s Developmental Disability Case Manager and inquired about funding… she said the family respite services would fund it!! The Caveat…. we would have to forfeit her music therapy allocations for the whole quarter!!

Well, that wasn't a viable option.

At about the same I happened to see a contest posted on facebook via the Autism Women’s Network. They were giving away a GPS locator and one year’s worth of service to an autism family. What could it hurt to try to win this, right? So, I emailed them at info@awn.com to tell them our story.

Our life possibly changed completely via one phone call this morning...!!!

I just sat down with a cup of coffee this morning as the phone rang. Of course, I cannot find the receiver… welcome to the world of tween-dom. The machine picks up and I hear an unfamiliar voice, but immediately recognize the name, Tricia Kenney with the Autism Women’s Network. I sprint to the living room and find the phone on my daughter’s desk… and answer.

I WON THE GPS LOCATOR FOR SAHARA!!

I am not even sure what I said to Tricia this morning. I was stunned. This is a VERY VERY EMPOWERING FOR ME, SAHARA, HER SISTER AND FATHER... THE WHOLE FAMILY!!

As I sat in the lobby of Children's Hospital this morning (Sahara was in thearpy), I thought about all the places and things we could do...

THE ZOO

COSI

FRANKLIN PARK CONSERVATORY

LIBRARY

FAIRS

THE MALL

GROCERY STORES

PLAYING IN THE BACK YARD

TAKING A WALK

PARKS

FRIEND'S HOUSES

SCHOOL FUNCTIONS

VACATIONS

... and the list goes on.

I think about how much we don't do in the community, because of fear of losing her in public! The stress we have between my husband and myself because we are under the constant stress of who is 'watching' Sahara. The sleepless nights because of the fear that she will walk out of the house. The obvious unjust responsibility that her sister burdens. The gut wrenching agony I have when I worry about someone nabbing her.... or worse!!

And as I think about what this simple, yet phenomenal devise will offer us.... I am filled with hope! I am thinking today about how we will be able to teach her better community skills and how we will be able to have more childhood opportunities and fun as these raw fears vanish.

Even the basic ability to be in a different room from her gives me relief... not only for my sanity, but for her personal growth and autonomy. When we were kids we went outside and we learned boundaries, we explored our environment, and we developed real self-regulating skills. Sahara has never had that opportunity... nor has her sister for that matter. Wow!! I am eager to see how this will play out...

Thank you Sharon Da Vanport and Tricia Kenney of AWN!!

Thank you Autism Women's Network!!

Thank you LifePROTEKT!!

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The Coffee Klatch presents Temple Grandin

The Coffee Klatch (TCK) is a real time twitter chat room founded and moderated by Moms of special needs children. TCK brings knowledge and empowerment into front rooms across the globe. I have found other mothers (and fathers) to be my best resource in advocacy, education and support; and TCK ranks up there with the best! Visit their web site for more information and transcripts from former shows.

Last night TCK had TEMPLE GRANDIN as their guest! I have posted some of my favorite tweet-quotes from the interview below. I do not intend to take away from the whole interview process nor do I mean to take anything out of context, but wanted to pull out some of the concepts that seemed to me to be important to emphasize. Please note, I still encourage you to view the Full Transcript from the Temple Grandin Show here.

My Favorite Temple Grandin tweet-quotes from TCK interview:

ABOUT SPECIAL DIETS

"yes it cleared up my yeast infections - I hav ecut huge amounts of suger out of my diet - with success and I talk about it in "the way"

"Im doing wheat free myself"

ABOUT INCLUSION IN SCHOOL

"You have to look at your particular situatin in your school - you might want to look at "unwritten rules of social relationships"

"there are some aspergers kids that get tortured in high school and may need to be taken out but - I am much more of an advocate for inclusion for elementary school kids - I want to emphasis that decision about this depend upon many unique variables with particular"

ABOUT MEDICATIONS

"the big mistake with antidepressants in the autism spectrum is too high a dose. some need only 1/4 to 1/2 the starter does - they are microresponders and you need to read the book very very carefully"

ABOUT SIBLINGS

"Find shared interests that they can enjoy together like painting pictures playing games sports any activity they both enjoy"

ABOUT DSM IV & DIAGNOSIS

"Aspergers according to dms IV is minor autism with no speech delay - it is not a seperate disorder - autism is a continuum to veryfrom mild and a little nerdy to no language and severe problems - Einstein in todays school system would prob be labeled autistic"

"According to DSM IV guidlines I would be HFA because I had speech delay"

ABOUT SPEECH DELAY

"I recommend that they read the book "How can I talk if my lips dont move. It is written by a person that is non verbal with autism - written Tito anybody working with non verbals should read that book"

ABOUT THE DIFFERENT WAYS WE LEARN

"You need to build on the childs area of strength."

"photo realistic visual thinkers like me are very good at art design drawing and graphics but I am really bad at algebra -some visual"

"the second type is the pattern thinker - or music and math mind - it is a more abstract form of visual thinking - these children may. thinkers can do geometry and trig"

"the third is the word mind - these children know huge amounts of verbal facts about their favorite subject "

ABOUT TEACHING

"Never taught in the abstract it has to be taught with specific examples"

"Mother told me to take my turn - turn taking was taught using board games -to understand the concept of turn taking I had to learn it"

"He took my interests and channeled them into motivating me to study - good teachers build on a child interests if a child likes trainsteach reading with trains math with trains - you want to use the motiviation of the fixation to motivate academics and career work"

ABOUT SOUND SENSITIVITY

"sometimes the sound sensitivity can be reduced if the child can get used to the sound on recording and the child can turn it up gradual"

"sound sensitivity - ear plug or head phones can be worn but - they must be off for half of the day to prevent the ears fromgetting more sensitive"

ABOUT TACTILE SENSITIVITY

"tactile - soft clothes that are well washed several times will be less scratchy"

ABOUT VISUAL SENSITIVITY

"two other things that help is using a laptop computer which does not flicker and try printing reading materials on pastel color papers"

"interventions- if visual some ppl find colored lenses are helpful - pale pink blue ligt brown and purple sunglasses"

ABOUT AUDITORY PROCESSING

"sensory probs are very variable - some have aud processing probs where difficulty hearing hard consentant sounds like D AND G"

ABOUT EARLY INTERVENTION

"keep the mind engaged"

"most imp is 20 or more hours a week of 1 to to teaching with an effective teacher. this is for very young children from 2 to 5 yrs old - not to stop at 5."

Full Transcript from the 3/28/10 Temple Grandin Show here.

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A Self-Awareness Challenge... promoting peace around and withinn you

A dear friend of mine initiated a challenge to her friends on facebook; consciously being positive until the end of the month. No bitching, no complaining, no gossiping, no criticizing, no negative self talk….simply having positive thoughts, actions, and words until the end of the month.

Today was day 2 for me; and I made it through a brief phone call with Jim’s former employer, shopping at wal-mart, and talking with creditors on the phone today!! HUGE ACCOMPLISHMENT!! Then I got on twitter and lost my cool when someone made 2 stinging comments @ me. I would rather not go into the content, but I lost it and flew off the handle.

So, another friend stepped in and reminded us about unity. And I started thinking about how I failed the challenge, BUT… now I realize I didn’t fail; I am doing precisely what I deem this challenge to be about: Becoming accountable for my responses and interactions with others (and myself). So, in hind sight I didn’t fail the challenge at all, but succeeded in self awareness!

Tomorrow is another day, and so, I invite you to join me (us)… there is no way to fail this challenge; it is about giving and promoting peace around and within you. The more peace you emit the more peace you will attract…

Let me know if you are game; and keep us posted. Here's to a powerful week of peace, love, kindness, and accountability!

(Thank you Robin for inspiring me this week in being a better person, mother, wife, child, neighbor, friend and stranger.)

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Mother Rebel

I didn’t wake up one morning a mother rebel and decide to piss off all of my family and friends. In fact, I didn’t reveal my mothering style to anyone for many years (as it was a personal decision between my husband and me). It wasn’t until after I recorded my research and experiences in The Mother Consciousness that I started to openly talk about our lifestyle.

I entered my stance on holistic mothering with caution; researching as much literature that I could get my hands on. I have spent countless hours filtering through research articles, documents, online resources and books. I have read many different perspectives pertaining to different mothering and health practices. I have weighed out the facts, sifted through consequences, and rendered personal decisions.

I, also, put the energy forth to not take the inventory of other mothers whom views may differ from my own. However, I have made it my business to inform others about my findings… why?

Because… until I entered a conversation with a health care professional about vaccines, I didn’t know I had a right to question the constructs man had instituted upon mothers. I was naive to the mere fact that I had a right to make an educated mindful choice about the physical, emotional and spiritual well being of my off spring. After some self-discovery, I determined that I had the inherent right to raise my kids as I deemed in their best interest… even if that meant going against the grain. Empowered with knowledge and maternal instinct, I knew that some stranger in a white lab coat or Armani suit did not have the power to dictate how we were going to raise our children.

Man is fallible; if you want to know how I reached that conclusion read my book. In The Mother Consciousness I talk about the series of events that awakened the natural mother within me including the death of my father, the brutality of a cervical biopsy, being misinformed about the future of my ability to bear children, the sexual abuse in America, and more.

I do have a pet peeve with some of the mothers that have not made the decisions I have… not because they choose a different lifestyle, that is their right too. In all honesty, I usually keep my mouth shut about their practices in order to avoid the agonizing confrontation and I believe that you have the right to raise your kids how you see fit. However, after many discussions with other mothers who have similar perspectives and after talking with those who don’t, I conclude that many women in the holistic movement feel forced to defend their mothering philosophies.

I no longer have the energy to defend myself… until you have a child that is suspected to have a vaccine injury and until you have tried to participate in attachment / holistic mothering you cannot rationally condemn my perspectives. Frankly, if my mothering practices offend you, make you feel less than, or stimulate something uneasy in you, that is your issue not mine. Simply don’t read what I post here on my Alterna-mom blog, Twitter or Facebook. And certainly, don’t buy my book, The Mother Consciousness. I do not force this life style (which takes much energy and focus) on anyone. But, as a wellness educator, I will inform you so that you too can make an educated decision. And if that decision is different than the one I’d make, that is okay, because you made it mindfully.

I decided not vaccinate my children before autism was intimately in our lives.

I do associate the 3 injections of a vaccine they mandated I take because of my Rh negative blood to my daughter’s autism.

I understand that to vaccinate is a choice, not something that doctors or government should mandate or force you to do.

I believe it is illogical to put thimersol into a pregnant or lactating woman.

I acknowledge that natural immunity is far superior to the toxins forced into your infant and child’s body.

I question the effects of the mother’s vaccination history on her offspring.

I do think the breast is best.

I advocate that women nurse their children beyond infancy; the world average is 4 years.

I think it is normal for women to tandem nurse siblings that have resulted from single births.

I know the home is the best place to birth during an uncomplicated labor and delivery.

I correlate medication and institutionalized birthing to the pestilence of sickness among our children.

If I had had a son I would have left him whole and intact the way our creator intended him to be.

I think co-sleeping with your child fosters trust and security.

I know that the power that created the body has the power to heal the body.

I trust that a fever is an expression of health.

I understand that when a mother works away from the children they are exposed to possible abuse and neglect.

I know the mother is the best caregiver for her children.

If you are in alignment of my views, I am glad we have connected and look forward to expanding our Mother Consciousness together. If you are intrigued I am glad you have an open mind and invite you to learn more. If you cannot relate to any of this simply hit the x button, turn away and move on… don’t try to convince me my views are wrong and in return, I will not disrespect your views; let’s simply agree to disagree.

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Money Saving Tip #6: Go To The Movies For Free

I know I haven’t posted any new money saving tips in awhile, but this one is just too good to keep to myself!

Yesterday.. I popped onto twitter to read some of the inspirational quotes before the dinner time crunch. I noticed ColumbusMovies posted a free ticket code for a complimentary prescreening for the new movie SHORTS.

AMAZING, RIGHT!?!?

Here’s the Bottom Line… there was no catch!

This is what we did:

1. Follow ColumbusMovies on Twitter.

2. When you see a post for a complimentary screening, enter the promo code in the link on the twitter post.

3. Print how many tickets you need. (Up to four)

4. Arrive early to the theater (the press and first come are served first).

5. Enter stadium 30 minutes prior to show.

6. Relax and enjoy the show!!

If you don't live in the Columbus vicinity... try finding a similar link in your area!

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