I Don't Want You To Fix My Child!

What if someone told you they wish they could fix your autistic child?

Fix... as in the act of making something that is broken repaired.

Am I being too sensitive?

I do not see my child as broken.

Challenged? Yes, but certainly not broken.

And then in the same conversation this person said, “…but she sure is beautiful.”

Beautiful… as in having great qualities that gives great pleasure or satisfaction to see, hear, and think about.

Am I the only who sees the paradox?

I do not see my child’s beauty as a compensation for her challenges.

Yes, she is beautiful, but more importantly….

…My daughter is Sahara Grace; She is whole, vibrant, and a perfect expression of herself!!

Lost And Found at the Library

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.)

Counting Candy Bars & Breaking Stigmas!

This is HUGE!!!

Sahara counted out 5 Hershey bars at the store (ignore that I let her eat candy bars).

So 1 was thrown away because it melted in the car and 1 was eaten in the store while shopping ... she pulled out the remaining 3 just now at home and counted them and said, "1,2,3.... no 4, 5... where 5? Oh No. Where'd it go?"

Yes, that would be my girl doing MATH!!!!

YAY!!

Tears of Joy Here!

That would be the same kid that was catatonic a year ago and the same kid they said couldn't count 3 months ago and, yes, the same kid they said would never be unable to live, work or socialize independently...

Busting through the stigma people!! If you don't believe in energy work and the power of intention and maternal love I am here to tell you it works! Don't let anyone tell you your kids can't do anything... and if they do... prove them wrong!! Sahara you Rock, Little Miss!! You are my greatest teacher!!

Back to School.... and I am sad!

I just received the long awaited supply list from Sahara’s school for Kindergarten… and it made me cry!! Not only is my baby going to kindergarten, but it was 3x longer than any I had previously with her neuro-typical sister. And then seeing the personal care section… hit me like a ton of bricks.

Today, I feel overwhelmed with the concept of my daughter not entering a general education classroom. This week, I feel annoyed that I am already advocating for her rights and the school isn't even in session. Recently, I have been wondering how it would be like to just focus on purchasing back to school supplies and clothing like a ‘typical’ family. Right now, I feel sad!

This will all come to pass... and in the mean time I have a lot of shopping to do for just one child.

1. 1 box of colored pencils

2. 1 box of 24 count Crayola crayons

3. 4 bottles of Elmer’s white glue

4. 6 white or clear drying Elmer’s glue sticks (Please not blue)

5. 1 box / roll of industrial strength Velcro ( not the smaller button sized pieces please)

6. 1 pack of 4 count AA batteries

7. 1 pack of D batteries

8. 3 rolls of clear packing tape

9. 1 box of 8 count large washable Crayola markers

10. 3 bottles of hand sanitizer

11. 1 pack of colored bold tipped dry-erase markers

12. 6 boxes of tissue

13. 1 large bag of either of the following: Skittles, Gummy bears, M&M’s or Jelly Beans.

14. 1 of your child’s’ favorite CD’s or DVD’s

15. 1 snack pack size of Zip Lock bags

16. 5 no.2 pencils

17. 3 pink erasers

18. 2 water Crayola color tray sets

19. 1 pair of pointed scissors

20. 1 clipboard

21. 1 pack of 4x6in ruled index cards

22. 2 bottles of Lysol Kitchen Spray

Personal care items (please label)

1. 1 toothbrush

2. 1 nailbrush

3. 1 tube of toothpaste

4. 1 hairbrush

5. 5 plastic grocery bags (for soiled clothing)

6. 2 tubes of Chap Stick

7. 1 bottle of lotion

8. 1 bottle/tube of tear free sunscreen

9. 1 container of deodorant

10. 3 wash clothes

11. 1 bottle of tear-free body wash

12. I blanket labeled with your child’s name

Additional Requested Items

Clorox wipes - we use tons of theses

Large bag of various size and color buttons

Paper plates

Various colored Pom-Pom craft balls

Pipe cleaners

Play- doh, any color will do

Cotton Balls

Magnetic tape or strips

Craft “google eyes”

Any fun and easy board game or puzzle

Clear Self Adhesive Laminate (contact paper)

Yarn –any color

Fabric paint – any color

Bubble mixture and bubble toys

Do you Support Females on the Autism Spectrum? I DO!!

Every morning for the past 11 days I have been reminding my online friends to vote for the Pepsi refresh Project. Specifically, I have asked them to support The Autism Women’s Network to win a $50,000 grant to fund AWN’S PROJECT FAIM (Female Autistic Insight Mentoring) which will host workshops across the USA.

Why is that so important to me?

…Simply, because I have a six year old daughter on the autism spectrum. Really I think that is enough of a reason, don’t you?

Before autism was intimately in my life, I had a fairy tale version of what my life would look like in my head. Yeah, I believe there may have even been a white picket fence in that dream. Silly Me!

When I started noticing (as early as 5 months of age) that my daughter wasn’t developing typically I went through the whole range of emotions… denial, anger, blame – you name it, it was there. Eventually after oceans of tears, I was able to move into a place of acceptance and even gratitude.

Autism HAS blessed my life with friends, opportunities and self growth that would have other wised failed to exist. But, that is my life… it is full of optimism. But, then I hesitate and think about my daughter's future… what will that look like? Will she dream of white picket fences?

Hold the breaks Mom… she is only six!!

Yes, I know, but I don’t think any differently about her life than I do about her neuro-typical sister’s. And with her sister in the middle of the tween-age years I am filled with more questions than answers:

Self esteem ~ Boys ~ Hygiene ~ Dating ~ Peer Pressure ~ Accountability ~ Respect for Self and Others ~ Hormones ~ Friends ~ Academics ~ Body Image ~ Sibling Rivalry ~ Drugs & Alcohol ~ Safe Sex ~ Female Empowerment ~ Communication

And as I am faced with these new issues with her sister, I cannot help but to wonder how I will address this with her. These issues are huge, but couple them with the challenges of autism...

Sensory Processing Issues ~ Communication Barriers ~ Environmental and Dietary Sensitivities ~ Discrimination ~ Physical Limitations ~ Emotional Imbalances ~ Vulnerabilities ~ Stemming ~ Pictorial Thinking ~ Facial Cue Integration ~ Socialization Challenges ~ Cognitive Delays

... and it can be overwhelming. How do I educate her? How do I promote safety? How will she develop self esteem and confidence?

Today she seems to have no awareness of most of these things… she lives for the moment, but that doesn’t mean I don’t prepare myself and become proactive in the female issues that she will eventually face.

I can even let my mind wander about her adult future and what that will look like and what challenges she may or may not endure … And I wonder how does being a female autistic impact these issues for her? How will she get the support she needs to be successful in whatever SHE chooses to do with her life? How will she become an empowered woman when she faces obvious challenges? How will she access the resources she needs for life skills?

College ~ Independent Living ~ Career ~ Marriage ~ Family ~ Childbirth ~ Motherhood ~ Abuse ~ Sexuality ~ Relationships ~ Rape ~ Civil Rights ~ Finances

Raising a daughter has its challenges… add autism to it and it becomes even more challenging.

I am perfectly capable of rising to this challenge… but that doesn’t mean I don’t reach out for supports and education. To me that is what the FAIM project is doing. My daughter does have some empowered Autistic Women on her side, advocating for her and it is through their experience that I embrace hope and yes even excitement about her future.

AWN through their FAIM project will visit 5 US cities to provide “effective supports to autistic females of all ages through sense of community, advocacy, and resources.” This is something our community needs… by community I mean the Female Autistic Community. As a mother to a female child on the autism spectrum, I believe that is my community too. And in my corner of the world we respect, support and encourage members of our community. So... having said that, I am asking all of my friends to support AWN with there vision.

Here is a list of things that this grant will provide (taken directly from the Pepsi Refresh Project Page)…

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 (Female Autistic Insight Mentoring) 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.

I believe that this grant will start a ripple effect that is needed among the female autistic population. So

, I invite you to vote for The Autism Women’s Network to win a $50,000 grant to fund AWN’S PROJECT FAIM (Female Autistic Insight Mentoring) daily until the end of this month, August 31, 2010.

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!!

MAMAPALOOZA COLUMBUS IS BECOMING THE BUZZ OF THE CITY

Mamapalooza Columbus is a branch of Mamapalooza Inc., a mom-owned and operated mother advocacy organization founded by Joy Rose of New York City. Mamapalooza Columbus is connecting local women, mothers and families through music, expressive arts, activism and education for cultural, economic and social awareness. This past May marks the fourth anniversary of Mamapalooza Columbus which has not only created a buzz, but inspired a Mamapalooza Committee of Coordinators, a Back to School Event and even one of the Mamas being showcased on Mamapalooza TV and the Museum of Motherhood.

Columbus, Ohio September, 2010 – Mamapalooza Inc.'s ongoing mission is to create authentic, inspirational, large-scale experiences that will reach millions. Mamapalooza Columbus is energetically helping this mission come to fruition.

It was Mamapalooza Columbus 2010 that inspired four Mothers to unite for the empowerment of the women, mothers and families of Columbus, Ohio. Eileen Clary (HandyGirl!) is leading this committee and is credited with starting the action in Columbus as the Regional Coordinator since 2006. Vanessa Abel (Earth Flutter), Joanie Calem (Sing Along and Dance Along) and Susan Richardson (Exceptional Beyond Labels) have joined Eileen as a Committee of Coordinators and have already begun the planning stages for a Back to School event this fall.

This Committee of Coordinators is hoping more mothers in the city of Columbus will join in the fun with innovative activities that impact the women, mothers and families of Columbus. If you have a product or service that focuses on creativity, fun, health, wellness, financial education, expressive arts or if you’re a Mom-preneur, Mamapalooza Columbus wants you to buzz in too!

Some of the other folks involved with Mamapalooza Columbus 2010 were Randi Mockensturm, Tenara & Candice, 7th House Moon, Majestic Belly Dancing, Elliot 12Trees, Leslie Zak, Nancy Miller/Scentsy, Cynthia Minnich/Clearartview, On The Spot Mobile Massage & Bodywork, Columbus Acupuncture & Wellness Center, and Global Gallery. Thank YOU for making Mamapalooza Columbus 2010 the buzz of the city!

Alexis Chapman, Independent Contractor for M.O.M. (Museum of Motherhood), came out to personally support Mamapalooza Columbus 2010. M.O.M. is a sister organization to Mamapalooza Inc., devoted to educating the world about the contributions of mothers both historically and in contemporary culture. Alexis connected with the Columbus mothers and stayed to enjoy some of the Moms that were rocking the stage! Later she connected with one of the committee coordinators, Susan Richardson, and asked her to be a guest blogger on M.O.M. and to be interviewed on Mamapalooza TV.

Mamapalooza Columbus looks forward to showcasing more mothers and connecting them with Mamapalooza Inc., Museum of Motherhood, Mamapalooza TV and other venues to bring the much needed awareness about the impact of mothers on our community. As Mamapalooza Columbus gains momentum and builds a buzz in the city, they will be looking for reciprocal sponsors to become involved as well as the perfect spot to hold Mamapalooza Columbus 2011 in May. For additional information on Mamapalooza Columbus, contact Eileen Clary at e_motok@yahoo.com. You can also get more information on Mamapalooza Inc. at www.Mamapalooza.com.