
Tuesday, 6 March 2012
Keep Sick Kids Out of School

Sunday, 7 August 2011
I AM ME... The Autism Discussion with my Daughter

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.
Sunday, 5 June 2011
Morning Gratitude
Friday, 27 May 2011
Why I Blog
Monday, 11 April 2011
Still Autism Awareness Month: Your beliefs are important.

Wednesday, 18 August 2010
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.)
Wednesday, 11 August 2010
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 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.
Saturday, 3 July 2010
Alterna Mom's Wi-Active Challenge: The Why and Day 1-3

Friday, 18 June 2010
Cell Phones: Luxury or Need?

Saturday, 24 April 2010
A Checker, A Cough and A Deal With GOD!
.jpg)
COUGH COUGH COUGH
Me: “Sahara, did you swallow a checker?”
S: “A Checker?”
Me: “Sahara, Did you eat one?”
S: “Yes”
Me: “You ate one?”
S: “No”
Me: “Sahara did you eat this?”
S: No response
Me: “Look at me…. Did you eat this?”
S: “Eat this?”
Me: “Is the checker in you?”
COUGH ***GAG*** COUGH
Me: “Honey are you okay?”
S: Points to mouth then to the checkers
Me: “Is there one in there?”
S: “No eat.”
If you have ever tried to get concrete information from a child diagnosed with autism compromised by a severe speech and communication delay, you know just how frustrating (almost on the brink of infuriation) that this type of a scenario can be. You don’t know if the speech you are hearing is echolalia or if the gesturing is part of a game or if it is telling you something.
You feel your energy begin to swirl… faster and faster into a panic. You lose your thoughts to your fears… and cannot think straight. You can’t remember if you heard a cough earlier that day and your mind can only embrace the worse possible outcome.
On the ride to the hospital emergency room, the silence is broken by this gaspy cough… then all is quiet again. It is a busy night in the ER! You register and sit down wishing that no one else was in your midst, certainly all the other parents are thinking the same thought; begging in their mind for their child’s aliment to be more important than the next to get the care they need first.
After an hour, you get called into triage. The nurse is annoyed because she has had to print out a third wrist band for your child and because of the sensory issues you know it won’t be the last. You say you will keep it on your wrist, but are quickly put into place and told it has to be on her body. Your relief of being in triage is quickly replaced with exasperation when the nurse redirects you back to the waiting area.
As you sit there you can identify with the other parents; all emotionally tired and frustrated. Suddenly you see a man come into the ER entrance with a gunshot wound. Whispers are contagious among the parents. You sit there with the fresh images of raw flesh held up in the air with a bullet wound dripping in crimson red. You unsuccessfully try to ground yourself.
The kids have to go to the bathroom, but the policewoman redirects you to a long corridor; they are guarding the gunshot victim and interrogating people at the bathroom entrance. You try to explain what is happening, but your kids have no clue what the word ‘gang’ means and have a difficult time following any explanation.
In the bathroom, your child begins this unnerving whine… you forgot to grab her special towel that she uses to wipe herself after going potty at the house. Her sensory issues are becoming even more agitated. You begin to doubt your decision to drag the whole family to the ER… it has been 2 hours since she supposedly swallowed the foreign object and she seems fine (fine, that is, other than this hoarse cough).
You wait awhile longer, and then they call you to a treatment. One nurse, a resident and a fellow later you are told they are going to do chest and abdominal x-rays. However, it is explained that the plastic checker will not show up on a film, so they are just looking at the integrity of the lungs, esophagus and abdomen. You agree to do the x-rays and are directed to another wing where you wait another 30 minutes.
You are relieved that your child is pretty cooperative for the x-rays as you stand next to her in a heavy lead apron. You wonder if the gown was comforting to her and as she seems to melt into the cold glass x-ray table. Back to the waiting room, then to the original treatment room and finally at 2:00 am you are told that there was nothing to show concern on the films…. However, that doesn’t mean that there isn’t a checker still in her esophagus. It is thoroughly explained that the concern now is the checker being sucked into her lung if it is indeed lodged into the esophagus. If you suspect this is happening you are instructed to call 911 immediately… this will be notable if she begins gasping of air. You sigh knowing that is the sound of the cough that triggered this whole wild goose chase.
Discharge papers take another 30 minutes to arrive. Your oldest child is overtired and snipping at everyone. The patient’s sensory input is on overdrive and is now pacing the halls and pushing the automatic door buttons. Daddy has an intense look on his face that even makes you shudder and you, well, you have completely shut down. Your family has had it and is exhausted and ready to get home.
The kids fall asleep on the way home. Your child wakes every 20-40 minutes the rest of the night with this hoarse gaspy croupy cough. You don’t dare fall asleep as the fear of suffocation has forced your eyes to stay awake. You are constantly questioning yourself whether it is just a cough or the checker moving.
You are exhausted! You are tired, and I mean not just on a literal level, but on a deeper more profound level. The manifestations of the autism has taken your strength and you lay awake pissed about your plight… thinking about how it would have been easier if your child could just have said whether or not she had swallowed the fucking red checker in the first place.
As you focus on the hoarse breathing of the limp child laying in your arms, you begin to beg for God to make the Autism just go away. You pray for her to find her way out of its grasps so she can have a functional, productive life. You pray for that miracle that will bring your child her speech and functional communication with the morning sun, so you don't have to guess anymore during another crisis.
And in the depth of your quiet heart you pray that she will simply make it to her next birthday;
Then in the recess of your mind you begin to search for the cure that will simply make her 'normal';
Finally, in the seat of your soul, you strike a deal with God that He will simply and miraculously heal your child tonight...
Thursday, 25 February 2010
The Cleavers We Are Not
.jpg)
Friday, 23 October 2009
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.)