1:88 Autism

1:88 and not an epidemic per the CDC?

That is because they would have a HUGE backlash if they acknowledged anything environmentally was contributing to this enormous spike in the autism diagnosis.

I love my daughter unconditionally ~ quirks and all ~ but the challenges she goes through is not normal... I am not talking nuero-diversity, I am talking the biological complications of autism.

I am not even saying that vaccines caused her autism, she isn't "directly" vaccinated.... but environmental toxins most certainly plays a part and I do have too many friends whose child was typical prior to specific vaccines....

Our government needs to eat crow and acknowledge the role big pharma, industrialized farming, food additives, petroleum tar-based dyes in our foods, approved household chemicals, industrialized birthing practices etc plays not in just autism, but all childhood disorders that are at an all time high... cancer, adhd, diabetes, ms, down syndrome, add, anxiety, ocd, sensory processing disorder, aggression, etc.

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What Essential Oils does Alterna-Mom Use?

I have been asked several times lately which essential oils I use with my family. I only trust and use Young Living Essential Oils because I know how they are planted, farmed, harvested, and steam distilled... They are FDA approved for internal consumption and my little ones benefit from diffusing and topical application as well, which is the easiest way to reap the benefits of therapeutic/food grade essential oils.

We have used essential oils to address a wide variety of issues including (but not limited to):

• autism
• anxiety
• nutritional support
• sleep issues
• ring worm
• kidney stones
• poison ivy
• flu and cold
• pink eye
• wound care
• constipation
• academic support
• liver support
• immune enhancement
• melt downs
• and many many more!!!!

If you are wondering how to get started with Young Living Essential Oils. It’s really easy:

• Go to www.youngliving.org/alterna-mom
• Click the “sign up here” tab on the right hand side
• Click “Independent Distributor” to purchase all your Young Living products at the wholesale price
• Click "I Agree" on the distributor application. Note: As a wholesale customer the only part of the agreement that applies to you is you must have a minimum of 50PV / $50 worth of purchases a year, to maintain your wholesale pricing – That’s it! That is ALL you have to do to maintain your wholesale pricing discount.
• Please use my enroller and sponsor number “#1183617” to be a part of my team and a member of the Young Living Success Group (this is a group of people just like you taking charge of their emotional and physical health).
• Choose your “starter kit” …there are 5 to choose from. I personally started with the Everyday Oil kit.
• When your kit arrives I will go though it with you, show you how to use your $40 diffuser coupon and answer all your questions.

____________________________________________________________________________

Distributors/Wholesale Customers enjoy:

• Saving 24 percent off retail prices.
• Buy what you want, when you want.
• No required packs to buy.
• No obligation to sell anything, ever!
• No annual fee
• A $40 off mail-in coupon on a diffuser in every Start Living kit

Optional Savings

If you enjoy saving even more be sure to read about Essential Rewards to learn how you can earn free product!

I look forward to growing our Young Living community…please let me know if you have ANY questions about getting started with Young Living or which essential oils are best for your unique situation.

If you would like a skype consult... let me know that too. :)

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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.

Today? I see how my older NT daughter is completely upset that I had lied to her all of these years. And although I know we shall get through this, it leaves me wondering how we will address this exaggeration of the truth to our autistic daughter. The not so well thought out excuse, “The spirit of Santa Clause lives in us all as long as we believe,” will certainly not suffice to my concrete thinker.

I have even started saying to her, “What if Mommy is Santa?” And she looks at me with a ‘I don’t understand’ expression and moves on. In fact, these are one of those moments in parenthood that you regret bringing mainstream delusions into the world of autism. I suspect that this will be a very difficult situation to overcome...

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.

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Attention Educators: Stop Bullshitting Me (Part 1)

I think educators think we [parents] are stupid.

However, I would like to remind them all [teachers, principles, aides and administrators] that as a professional counselor it is my job to see through people’s bullshit. And lately I have been wading in a lot of that.

I have tried to be nice, like Peter Wright suggests... but I have had my fill of social etiquette this year.

(For those of you who don't know: The district is moving our autistic daughter from her current building to the home building based on residency because of 'district growth challenges' or so they say... and we have let them know we do not approve. She is not only flourishing but has built friendships with the kids in her grade level.)

Anyways, the principle out right lied at the IEP meeting stating that the 'administrative team' reviewed her records and the decision was based on her excessive tardiness... "REALLY? because I put her on the bus on time every day this year; she better have gotten to school ON TIME". Of course her school record confirm that she was NEVER late to school. So we were told about 3 more songs and dances on why she couldn’t stay in the building where she was not only established, but flourishing!

What is interesting, we know there are other children in this same building who are not in their home building... and yet they did not get the same letter that we were told was 'standard' and sent to all students not in their appropriate building based on residency.

But the thing that bothered me the most... was the teacher I lovED and respectED didn’t correct the principle in her tardiness accusations... she sat there wide eyed and didn’t say a word... until the principle left the room. THEN she whispered, “She has never been tardy!!” Why didn’t you speak up when the principle was ‘arguing’ with me about this? I thought you were supposed to be Sahara’s advocate. (3 professionals you work with told me you have 'pull' with the district and could advocate for her to stay... so why aren't you??)

Then the therapist and teacher refused to add accommodations into the IEP that support these statements.... “she reads better with the lights off” (sensory issues) AND “she does better in OT with fine motor activities (like writing) when she does Brain Gym first”.

When I tell you I am unhappy about this not being in the IEP I get the response, “they will figure it out.” That Is not only an unprofessional statement, but unacceptable.

My poker face went out the window weeks ago, so you add, “well, Sahara just might tell them herself.”

Seriously?!?!

The child still often speaks in jargon and you are going to expect that level of verbal communication from her? Yet alone that is not the child's responsibility!!

“I thought you said you were going to relay that to the new team yourself?”

"Oh yeah I will” [big cheesy smile]... pardon me I think you are bullshitting me again!!!

This makes me wonder how much more bullshit you dealt out this year. Unfortunately, I will never know since my daughter has gross communication and language delays. But I wonder about the rides home when she said, “Sad... school... sad” as she whimpered. Or the day she came home saying, “Arm hurt....” And when I asked about it ‘nothing’ out of the ordinary was reported.

If you cannot speak your truth in front of the principle or directly to me when confronted.... I wonder how truthful you have been all year. So maybe, just maybe... once again, God is protecting Sahara by having her forced to move on from this building.

I know I have been very verbal about this on facebook lately... that helps me process. And I knew I would eventually get to the silver lining... I think I got there today.

I really was hoping for different outcomes... but time to move on. So, we are agreeing (as if we had a choice) to put her in the home building under the contingency that if we note ANY regression, we are reconvening the IEP team! And I WILL have my head so far up the new team's butt... they will be crossing every T and dotting every I for me next year. I will not let my guard down nor get all buddy-buddy with the new team. They are being hired by me to do a job... and I will make sure they are doing it.

So we end the school year bitter sweet.... you just heard the bitter.

The sweet is Sahara has made HUGE HUGE HUGE progress this year. She has bloomed socially and academically (reading, writing and doing math!!). If I see any hint of regression in the new setting I am no longer afraid to go to bat for this kid!! And again as an educated mother who has worked in the education and counseling fields... I am not hesitant on pulling her and home schooling. She deserves that and much more!

((Stay tuned for part 2 on Stop Bullshitting Me... Part 2 on Emily's adventure!))

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Restless Good Night Routine

Our nighttime routine is anything but routine... it has no rhyme, no rhythm! It is undeniably the most difficult part of the day in the life of autism. When Mom and Dad are both exhausted from the day's events.... one child ready to crash n burn while the other is just getting her second wind.... or so that is how it seems.

Last night I had a revelation about this challenging situation; and ironically it was the very fact that this night was no different than any other that gave me the insight...

Everyone was in bed by 9:00pm. Well, everyone but Sahara... who was running downstairs to find her tiny wooden bed for her tiny plastic Bambi deer figurine. She turned every toy chest over until our apartment looked like a ‘Toys R Us’ explosion took place.

The thing that tugs my heart strings the most about this is that she doesn’t have the words to say, "Hey, did anyone see the little wooden toy bed?" Nope instead, she was running around yelling, "Where'd it go?" coupled with a bunch a mindful jargon that certainly... just maybe… most likely meant, "Hey, did anyone see the little wooden toy bed?"

So we spent an hour looking for a toy that she is obsessed with, but we didn’t know which toy we are looking for... a needle in the hay stack. Thank GOD for Emily, who is usually the one to break the code. She figured it out and Bambi finally got a proper tucking in!! Everyone was back in bed.

10:00 pm

"I hungry. I hungry. I eat chocolate pudding.... I huuunnnngry."

Chocolate Soy Pudding is one of the only things she will eat and I am certain she really was hungry... it had been hours since she had consumed anything other than string and paper; pica sucks and has been rearing its ugly head more frequently again!! This brings us to the next development of the story... After she ate the pudding... she said, "Potty!"

I tell her to go... after 5 minutes I say, "Sahara wipe and come back to bed."

"I POTTY!!"

"Are you pooping?"

"Yes, I poop." This was followed by several minutes of loud grunting. I get up and go to the bathroom to see her pushing with all her might!! Constipation!! I am certain it was triggered by the cardboard she ate the night before. There she sat in tears for a half an hour with just 2 tiny pellets to show for it. My heart aches! I can see the frustration in her eyes as she says, "Potty broken."

11:45 pm

After she settled back into bed, she decided she wanted to sleep on the futon at the end of our bed. We get her settled in, lay back down... and she starts to chatter non-stop. We can understand words intermittently, "mermaid... poop... party... frog...."

12:30 am

She was now hopping like a frog across the futon... and flopping like a mermaid, all while the chattering and giggles continue. Her dad tried to reason with her... but rationally we know there is no reasoning... she is stimming and we have to wait it out. I lay down beside her... I watch and hold the space... I can see that it is not a conscious game she was playing. But rather an obsessive flow of thoughts, actions and words.... pouring out of her.

1:45 am

Then just like every night... she suddenly stops. Silence!! She scoots closer to me... I can feel the sleepy warmth of her body as she cradled into my arms and gently played with my ear lobe and cheek.

2:45 am

The house was asleep.... as my own thoughts kept fading in and out of sleep.

4:00 am

She woke up again to use the bathroom.... sensory issues do not sleep!! It takes her another hour get over the moisture on her skin from the urination.

5:00 am

She was sound asleep. I was beyond the exhausted phase... you know, the one where you can't sleep. I lay there watching her peacefully sleep.... maybe one of the few moments of normalcy in her chaotic world... I heard her sister's heavy breathing… and my husband is in a deep soundless sleep. I was alone with my thoughts in the quiet of the night. I lay there thinking about this... and I conclude that this bedtime routine serves a grand purpose.

I believe that she is emoting the stress of her day; processing the events, words, interactions, demands, fantasies, constipation, pica, raw frustration of living in a world where few understand her thoughts and words... in the only way she knows how... in the quiet of the night… where she is safe and nothing will interrupt this process… she flaps, stims and processes her day. And once this unconscious need subsides she falls into a gentle sleep.

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Psst... Guess What??

I have a new love interest...

Yup, It's true and it all started this past summer.

I was passing another kidney stone while at Mamapalooza Columbus. I had taken Percocet the night before with no relief. After a sleepless night, I told hubby (as a committee coordinator) I was going to the festival regardless of the pain or not… besides being up and moving was the best way to get this stone to pass naturally.

At the festival, the stone caused a constant dull pain with moments of sharp jabs. I walked around with my hand on my side… I think 2 people (including a MD) asked if I was pregnant. (**shakes head**) The MD advised me how to clean up my diet to prevent more stones, but that wasn’t going to rid the pain I had in the moment.

I happened to stop at the essential oils booth and was talking about autism (Of course!). I found out they had an autism protocol… completely skeptical, I kindly took some info and walked on. However, If you know me, you know that I am inquisitive… so as the day went on I went back to this booth numerous times to ask questions about this “autism protocol”.

Finally, early afternoon, the girl at the booth asked if I was okay… I nonchalantly said, “You don’t happen to have anything for kidney stone pain, do you?” She gave me a smile and said, “Let’s find out.” She pulled out this huge reference guide to Young Living’s Essential Oils and was flipping through the pages…

“Here try this… Eucalyptus Blue.”

I put 1 drop where my pain was, talked to her briefly some more about the business side of the company… and moved on. About 15 minutes later I was chatting with another vendor who complimented me on how good I smelled… I chuckled and pointed to the oils booth and said, “It is an oil from their booth. Apparently Eucalyptus is supposed to help with kidney stone pain………Holy Shit… My pain is completely gone!!” Why is this so amazing... read this, this and this about my chronic kidney stones.

TRUE STORY!!

… and that is how I found out about Young Living’s Medical Grade Essential Oils.

Since then I have tried other oils with amazingly similar results.

Eucalyptus Blue… 1 drop continues to eliminate the pain the comes with my chronic kidney stones. However, this weekend I applied some with olive oil on my daughter’s chest and back and within minutes her croupy cough subsided and she was sound asleep for the first time in 2 weeks.

Thieves… Said to have anti-viral, antiseptic properties... Weber State University (Ogden, UT – 1997) studies showed anti-bacterial effectiveness against airborne microorganisms. Like I said, my daughter has been pretty sick for the past 2 weeks; fever, croupy cough, aches, pains, ear ache, etc. After 3 applications of thieves on her feet, she was up and walking about… slowly, but was up nonetheless. Oh, and this morning I ran out of laundry soap… we already had those magnets you can put in your washer, so I used those with a drop of the Thieves oil and ‘wa-la’… clean nice smelling clothes without the use of harsh chemicals. Have to love it!!

Peppermint… We have used for indigestion, muscle pain after falling on the ice, and for mental alertness.

Lavender… 1 drop on a cotton ball put in our daughter’s bedroom and she is asleep within 30 minutes. This is our ASD child that has had chronic sleep issues since birth!! We have also used this one for muscle aches and ear aches.

Peace and Calming… 1 drop on a cotton ball in the Master Bedroom melts away the stress of the day for myself and hubby. Have also used this over the liver (Blue Tansy is said to cleanse the liver.)

Valor… A few drops mixed with olive oil rubbed along the spine is fantastic… they don’t call it a chiropractor in a bottle for nothing… love love love this one. I have also used this one for grounding myself before reiki sessions and for self-confidence building for myself and children.

So, these are the testimonies I have so far in my own household… I plan to document more on this blog as we explore more. In fact, I am so excited about the outcomes that I have signed up to be a distributor… but be sure that that isn’t because I am looking for a quick buck… this product line is exceptional and meets my standards and ethics.

Oh, and about that autism protocol… I haven’t done anything with it yet, but am still looking into it. One of my concerns was that Sahara doesn’t like to get wet (sensory issues), but I have found that putting the oil on a cotton ball or on her feet works well. I am going to a class this week to hear a mom talk about what oils she used successfully with her ASD child… I will let you know what I find out on another post.

In the meantime, if you are interested in learning more visit http://www.youngliving.com . If you decide you would like to place an order, would you be so kindly to reference my number 1183617

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Dr. Temple Grandin: Animal Behavior, The Autistic Brain and Inspiration!

Many people get excited about meeting their favorite rock star or movie star… not me, I wanted to meet a livestock behavior expert!!

You may ask, ‘Why on earth would Alterna-Mom, a mid-west special needs mom, be interested in livestock behavior?’. Well, I am not. And yet, ironically I completely am. See, Dr. Temple Grandin isn’t just the world’s most famous animal expert and livestock rights advocate, Dr. Grandin has also won the hearts of the global autism community through her self-advocacy and insights on how the autistic brain works. … yes, that is right a DOCTOR of animal science who has autism!! She unknowingly paved the way for many of us to see that our children and loved ones are exceptional beyond labels and can achieve anything they desire.

BUSTING MYTHS

Dr. Grandin was diagnosed at age 3 ½ with non-verbal autism (infantile schizophrenia). The doctors wanted to institutionalize her, because, frankly, that is all they knew how to do back then. In her generation, it was common to ship off the children that were ‘different’, however having an independent thinking and educated mother who saw potential when no one else did, Temple was given proper early intervention and support which has cultivated a drive within her like none I have seen. Temple is a confident, successful and witty business woman and autism/animal rights advocate.

Busting the myths of autism, Temple and her Mother, with sweat and tears, were able to give Temple the tools she needed to become all she is today:

"Dr Grandin obtained her B.A. at Franklin Pierce College, her M.S. in Animal Science at Arizona State University and her Ph.D in Animal Science from the University of Illinois in 1989. Today she teaches courses on livestock behavior and facility design at Colorado State University and consults with the livestock industry on animal welfare.

Dr. Grandin has appeared on television shows such as 20/20, 48 Hours, CNN Larry King Live, PrimeTime Live, the Today Show, and many shows in other countries. She has been featured in People Magazine, the New York Times, Forbes, U.S. News and World Report, Time Magazine, the New York Times book review, and Discover magazine. She has also authored over 400 articles in both scientific journals and livestock periodicals. Her books 'Animals in Translation' and 'Animals Make Us Human' were both on the New York Times best seller list. 'Animals Make Us Human' was also on the Canadian best seller list.

In 2010, Time Magazine named her one of the 100 most influential people." ~ Michele Gwynn

When a friend informed me that Dr. Temple Grandin, Ph. D. was coming to Ohio State University to talk about dog and horse behavior, I was determined to see her. This is my personal reaction to that evenings presentation.

LIVESTOCK, PUPPY MILLS AND ANIMAL BEHAVIOR

Dr. Grandin’s presentation on animal behavior was intriguing. Every insight she shared… seemed common sense. However, she diligently expressed that when we are in the moment of behavior issues with our pet and livestock it is hard to step aside and see the details that might be triggering the behavior. (Kind of like our kids, don’t’ you think? How many times do we find ourselves wondering, “That was so obvious, why didn’t I think of that?”)

The presentation covered the horror of Ohio being the Puppy Mill Capital of the United States (alarming!!) and that Ohio is 1 of 15 states where it is still legal to auction dogs (sad!!)… The take home message was this: DON’T BUY DOGS/PETS!! Go to a rescue or humane society to adopt… this will put puppy mills and breeders out of business. Aside the fact that we have too many dogs already in the world without homes, I couldn’t conceptualize why we purchase and purposely breed even more? This part of the night was shocking to me. The local groups that sponsored this event shared horror stories about puppy mills and breeding… I don’t want to share those raw details here, but it is down-right tragic and cruel!

Dr. Grandin talked about breeding and genetics. When we try to breed for the best and strongest genes/traits we also get unexpected discrepancies… the best way for me to summarize the ironic message here is that when we try to create superior breeds we end up with the weakest: physical and behavior issues are emerging at an all time high because of breeders interfering with and breeding for the best traits like blue eyes and fertility. Dr. Grandin says that if you want a fancy breed of dog… for instance the Golden-Doodle… Firstly, only get one from someone that can present the mother to you… if the mother isn’t present, don’t get the dog. Secondly, make sure it is a first generation Golden-Doodle… with one parent being a Poodle and the other a Golden Retriever.

The last take home message on this topic was too “test drive before you buy” so to speak. Just because some kids have had success with pets, doesn’t mean all will. Make sure the pet is a good match for child as well as the pet.

THE AUTISTIC BRAIN AND ENABLING

Dr. Grandin has raised the bar with animal care in the livestock industry and she has studied the behavior of animals most of her life. More amazingly, she has been able to give us a peep into the mind of an autistic. This has given Dr. Grandin the rare opportunity to educate the world about the similarity between thought patterns of autistics and animals.

Of course, I was pleased to hear Dr. Grandin talk about this topic (after all that was the main reason I wanted to come to this event). She talked about the autistic mind thinking in pictures and how the autistic mind, similar to an animal’s, categorizes everything. Her insights have helped me to understand my children better and left my tween walking away saying… you know that is how my brain works too. This opened the door to a fantastic conversation about the aspie traits we recognize within her and how this doesn’t change her core.

Dr. Grandin talked about how children today are not ‘pushed’ like she was. And although we have more supports and interventions than ever before, the parents and other significant others in the child’s life today, enable them use their condition as an excuse to not have responsibility and goals. She says that as long as a child can talk, make them talk for themselves. Make them get up at a descent hour and have a productive day. Make them accountable for all they do. Give them opportunities to cultivate the desires, interests and dreams. Don’t use the label “autism” for an excuse.

She further illustrated this point by acknowledging that as a child she loved going to the beach and letting sand drip through her hands… this simple, almost hypnotizing action, focused and soothed her (sound familiar?). However, she stated that if that was all she was allowed to do, then she wouldn’t have been giving the opportunities, skills and determination that lead her to the events in her life that brought her on the stage talking to us that evening. Because her mother pushed her beyond the stimming, she was able to become the successful woman that she is today.

TECHNOLOGY & SERENDIPITY

At one point, Dr. Grandin told several aspies in the audience to use the power of “Google” to open avenues for their own hopes and dreams… she said today’s generation have it very easy in comparison to the what it took her to accomplish her goals. Dr. Grandin said that with all the technology we have today (and gave credit to all the aspies who made THAT possible) that anyone anywhere could open doors easily. She referenced what I term as ‘serendipity’. She said to go out and meet people on social networking sites and present your own work and portfolio. She was adamant that if you met the right person doors would open for you…

(Side bar plug: So, I hope an editor or publishing house sees my blog/writing and someday picks me up… )

Speaking of plugs, Dr. Grandin talked about her HBO movie, Temple Grandin. I loved her enthusiasm and the beam in her eye when she relayed that every fact presented in the movie was accurate; if you want to know how an autistic mind thinks, watch her movie; if you want to know how a cattle chute or livestock yard is run, watch her movie; if you want to know her life story up until she was 30, watch her movie… I believe from observing her body language and the enthusiasm in her voice that she is very proud of not only this movie, but having had a hand in the making of it.

Another thing Temple was vocal about was her drawings. She adamantly stated that it took her 3 years of practice to draw cattle chutes in the manner that she can. And that the drawing in the boardroom during the movie, is an actual drawing of her’s.

CURE VS. RECOVERY

One mom in the audience even thanked her for the insight and inspiration that she offers so many of us! There were several apsies in the audience, one in which asked her about organizations like Autism Speaks. Dr. Grandin didn’t directly answer the question, but instead gave a 5 minute impromptu lecture against the curing of autism spectrum disorders.

She ended the mini lecture with 2 points:

1) If you cured every person who had autistic traits, we would no longer have any scientists or computer geeks to advance our world.

2) If you cured a person of their autistic traits, you would take a component of who they are at the core of their being away.

I have thought a lot about this point over the past 6 years. I do not want to cure my child of the unique abilities and attributes that make her her, but I do aim to soften the challenges that make life difficult. I want to address her functional expressive and receptive communication skills, her dietary needs, her delayed motor skills, her sleep disorder, her raw frustrations, and to curb her inherent need to flee to protect her from bodily harm. (… this list could go on.) However, beneath these challenges, there is a core within her existence… a witty, funny, determined, moody, intelligent, confident little girl that without a doubt will use some of her autism attributes to define her persona and create an exceptional woman who can and will be able to accomplish anything she so desires.

DIFFERENT, NOT LESS

I imagine this is what Temple’s mother meant when she said, “different, not less.” And as I watched this magnificent woman on stage talk with us, I saw how she was different; her rigid body movement, her deliberate gestures & need to put her hands in her pockets at specific moments, her articulation of words, her ability to recite the lecture she certainly was reading from the pictorial memory within her brain, her obsessive passion for animals and the consistent ability to relate the animal behavior to that of the autism. But, I also saw this woman who had a charming sense of humor, a passion for her animal mates, a sense of confidence as she articulated her mastery of the subject at hand, a sense of pride about her artistic skills, and the desire and ability to engage with the audience. Most importantly, I saw a woman (whom I respect and adore) present herself with all her little quirks and nuances with an aura of being exceptional beyond the label of autism.

I am proud to have Dr. Temple Grandin be a role model for my young girls. She was everything I expected her to be and more.

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An Autism Halloween Adventure: Beggar's Night, The Lost and Not Found, & Nerds at the ER

I LOVE Halloween… I always have… constructing the costumes, organ themed music, bats and black cats, haunted houses, pumpkin patches and beggar’s night… SCREETCH… BEGGAR’S NIGHT… THAT IS WHERE OUR STORY BEGINS (and hopefully ends)!

This year was just as ordinary, yet profound. Let me explain, about 2 weeks ago Sahara started asking, “Trick or Treat, Yes?” Which is easily translated into, “Can we go Trick or Treating Now?” Up until this moment in time she has shown little to no interest in this particular activity nor has she had the speech to ask for it in advance… all huge milestones. So we created a visual aid to help her count the past 15 days… the excitement was building as we approached Beggar’s Night.

All morning she repeated her daily schedule over and over until she got to the part where she said, “Trick or Treat, Yes?” and would look at me with anticipation to confirm that today was the day! “Yes,” I would excitedly repeat, “after school… pizza… then trick or treat!” And she would smile and say, “Okay!”

[Fast forward… to the main event]

As we were getting ready for the big event, Sahara eagerly helped with her costume assembly… which the girls had helped me for the past 2 months construct… Golden Skirts and Tops with Egyptian Hieroglyphics sewn along the hems, head bands with golden coins dangling across their beautiful foreheads, with white capes… at the last minute we had to add a long sleeve black shirt and hosiery to keep warm. They decorated their already beautiful eyes with thick Egyptian black lines which turned into fancy swirls and golden (yellow) eye shadow.

The girls danced around me and wrapped me with toilet paper and drew even darker circles around my already tired eyes. Daddy threw on all black clothes with a golden sash… okay, that one was lame, but we ran out of time with our “Egyptian Family Theme” and his costume took the brunt of it. (Honestly, I don’t think he minded at all.)

So, it was cold and windy… but we trailed along in awe over the moment of normalcy both children were partaking… I say “both” because although Sahara was fully participating joyfully, cognitively, and with cleverness (she was successfully focused on how many Hershey bars she could capture tonight) … Emily was also indulging in a children’s activity without worry, and domination (which is partly the result of having a special needs sibling… she is always the one to control a situation in a life full of events that she has no control over). Laughter filled our little family bubble!!

Emily exclaims, “Look Mum your family tree!” as she points to a tree that had been toilet papered. Even more laughter…

[Fast forward to the last house]

Emily is chatting and smiling about how Sahara got more candy because she didn’t understand the rules of taking one piece… and I am laughing not only because what she is telling me is true, but because we are having a carefree moment... Then suddenly I hear a faint “CLINK”… I snap my head up and she says, “Your wedding ring!! IT’S GONE!!”

“What!?!?”

“It was on my finger, and now it is gone!”

I stay calm… let’s face it… I am not one of those women who need a ring on herself or ‘her man’ to identify that our hearts belong to each other… we have been through way too much together to have a piece of jewelry define our love, passion and respect for one another. In fact, that is how Emily got the ring. I haven’t worn it in 7 years (he hasn’t worn his since, well, probably our honeymoon 15 years ago). She found it a few weeks ago and thought it looked nice with her Golden Egyptian costume. I told her time and time again not to wear it outside, but to no avail she snuck it on to complete her costume. I suspect that deep down somehow having both rings (his and mine) brought her peace within her never-ending chattering mind… she has a deep need for connection with us.

[Back to the story…]

We got a flashlight from the lady at the house we just went to… NO luck! So my wedding and engagement rings lay resting upon the earth somewhere in the neighborhood… an omen? I think not! Did we punish her? I am certain that there is NOTHING I could have said or done to make her feel any more remorseful and horrible than she already felt… sometimes we are our own worse enemies… I am also certain that she fell asleep crying last night… the ring really meant more to her than I. She new someday it would be handed down to her(being our oldest daughter) and that hurts deep. We will go back out today and retrace our steps, but I am sure it is gone…

[The Loot…]

As the children went through their loot, we cringed at the amount of hfcs and dyes lying on our floor. We knew the kids would ingest more tonight than they had all year combined, which is why I always let them take the day after Beggar’s Night off from school… up late + jacked up on candy + tired = pajama day!!

Emily was still pouting about the ring while sorting, organizing and lining up the piles of candy in front of her; Daddy was upstairs changing into comfortable clothes; and I was on the phone with my sister talking when I saw Sahara dart out of the bathroom and into the kitchen. I got up to follow her and saw she had tweezers by her ear… I asked, “What are you doing?” She replies, “Ear!” “NO Sahara, we don’t put tweezers in your ear,” I see a flash in my head of her lying in my lap as Jim successfully pulled a dried pinto bean from the sensory box from her ear months ago…

HALT!

I listen to my gut and look in there… I think I see something. I quickly tell my sister I have to go and yell for Jim to come downstairs. I lay her on my lap and sure enough I can see something!! He brings me a flashlight and I see A PINK NERD in her ear… I look at Jim and say, “I don’t think you can get this one!” (Yes, that means we have done this before… why our children like to put stuff in their ears and noses is beyond me, but they do.)

[The ER…]

We have this routine down… but not when jacked up on sugar. The kids are antsy, the waiting room semi-packed full of random kids with face masks (and not the ones for Halloween, the kind you get to prevent spreading your germs). I cringe!!

The triage nurse thinks she can get the Nerd out… we say go for it!! She brings in this plastic pick like tool, swoops and… Nothing!! She tells Sahara to sit up, tilts her head and taps the other side of her head and shakes her head a bit… Nothing!! (Yes, that freaked me just a bit!) Sahara puts her finger in her ear before anyone can stop her and it went back to its original position. As the nurse confides in us that she used to work with autistic kids, she says she will make us a priority on the list to get a room.

Within 45 minutes of arriving we are escorting to a room in the ER. I note it is room 28… Emily’s favorite number... perhaps a good sign!

[Or maybe not…]

The ER nurse come in and attempts the same procedure as the first without luck… Sahara is starting to get agitated and I switch positions with my husband so Sahara doesn’t see my concern on my face. (I openly admit I am not calm in emergencies…. especially when my child is screaming in pain!) This nurse goes to get the charge nurse. When the Charge Nurse comes in she starts talking in a normal manner questioning Sahara... whom I answer for. The CN doesn’t see the nerd and starts to question us, “How do you know something is in there? … Did she Tell you? … If you did see it, what color is it?” She pushes my buttons “… just bc YOU can’t see it doesn’t make us or the other 2 nurses wrong… it is in there! We saw it!”

Nurse #1 looks again… “Yes, it is there [tells her location]”. The CN claims she sees it now and tries to swoop it out with the plastic hook… and makes Sahara’s ear bleed… Sahara is screaming, I am cringing, and Emily is repeating, “What is wrong with you mom?” Over and over again! Jim takes a deep breath and is once again our rock!!

Nurse #1 and the CN leave after discussing our options: 1) try the plastic hook again 2) flush it out with warm water… we choose 2.

[Enter Nurse #3]

“Hi Honey, what were you for Halloween?”

I snap, “She can’t answer you… she has autism!”

She handles my response well… I like her! We discuss with her Sahara’s sensory issues and our concerns about the flush. Sahara hates to get splashed with water and it will cause an instant melt down; she is already in pain, agitated, and emotionally spent. We ask her to let Sahara play with her stethoscope (one of her obsessions) to keep her calm.

[Nurse #3 leaves… Reenter #1 and CN]

“So you don’t want to do the flush,” asks the CN.

Jim impresses me with his calm, “No, we didn’t say that!! We are trying to explain the sensory and emotional needs of Sahara and what she needs to support her during the flush.”

“So, what do you want us to do?”

I ask for a surgical brush so I can brush Sahara first and they look at me like I am nuts!!

“Do you want a wash rag?” asked the CN.

“No, I want a small white surgical brush.”

“We don’t have any.”

“You are a hospital that doesn’t have a surgical brush?”

“Do you want an emery board?”

“NO!! I want a surgical brush… forget it I will just do the deep compression with her.”

“The deep what?”

(I am obviously dealing with nurses who have NO clue about autism or sensory issues. I am stunned since this is the same hospital we get all of our Autism Therapy from!)

They come back with a brush… but not the OT brushing protocol surgical brush… I tell them that won’t do. They leave and I rub Sahara’s skin hard with my hands, and then do joint compression. She seems to be calm.

[Enter nurse #3 and a new nurse #4 with a syringe that is HUGE!]

The syringe looks like it has a needle on it (it is a soft attachment to aim the water) and they start to say what they are going to do. I interrupt them and start to explain it to Sahara in broken phrases. I let her touch the syringe and tip, and she yells, “No, I don’t want to!!” The new nurse explains to us that the CN has told them to accommodate whatever requests we have, so I ask for a weighted vest.

… they look at me with puzzled expressions. I tell them to go to the dental trauma area and bring back a lead vest. They comply. After a few seconds of resting under the weight of the garment, Sahara seems calm once again. They demonstrate on me what they are going to do and water goes everywhere… down my clothes (trigger), on my skin (trigger) to the floor (trigger)… She starts to scream and thrash!!

I pray out loud for the Nerd to just pop out.

I quietly send her Reiki to relax her.

The long and short of it is… After another half hour of pain, screaming, and thrashing the nerd has dissolved from the warm water and is apparently gone. Nurse # 3 & 4 say they will send the CN in to confirm it is gone… we request someone else since we the CN couldn’t see it in the obvious position earlier. They FINALLY send in the attending doctor. He confirms that nothing is in the ear canal anymore, that the drum is red and will be sore, but otherwise she is fine and we can go home.

[When you think nothing else could go wrong…]

I tell Jim to take the kids to the car and I will get the discharge papers… after 10 minutes they arrive.

As I am walking to the jeep, I see Emily and Sahara running and crying. (Still not sure what happened other than ‘Daddy yelled at us’.) Everyone is tired and stressed to the max!! But, we all are able to calm enough to get in the jeep and head home.

… are you ready for this?

The plastic encasement on my key busted in half and the remote fell out in the dark at midnight in the ER parking lot!!

After looking for awhile I say, “F#ck it!! Let’s go…”

“Are you sure… “

“Yep, let’s just go!!”

The jeep won’t start!

Apparently you need the chip in the key remote to start the engine!!

Sahara is whining, Emily and Jim are out retracing their steps and I am trying to decide who to call to pick us up because at this point I am exhausted, my children are exhausted and my husband is exhausted and I just want to go home. I open my door to tell him to call his best friend and the remote gleams under the night post.

...the engines starts, we get fast food on the way home and everyone is zonked by 1:00 am.

[Happy Halloween!!]

Did I mention that Sahara was diagnosed with Infantile Autism on October 31, 2008? I vowed I would not let that ruin my passion for Halloween… like I said at the start of this really long (sorry it is so long) post, “I Love Halloween.”

Here are a few concluding thoughts: Yes, parts of last night sucked, but Halloween still kicks a$$! I have confirmed that I love my husband more today than ever! I don’t need a Rock on my hand as my hubby IS my Rock! My kids are making huge progress and have taught me the power of true unconditional love and for that I am grateful! And I am almost certain that all of my other jewelry is back safely in my room and that nothing else will go into the ear that doesn’t belong there.

Well, kind of, maybe certain…

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One of Those Days... WTF?!?!?

So it was a rough weekend... PMS and all!!

The firework show was a bust and stimming was at an all time high in our corner of the world. We didn't make it to bed until 11:30 last night, then the new kitten woke the girls and me up at 5:00am!! It was bound to be a rough day.

The music therapist cancelled at the last minute... but, I understood... her hubby was home for the holiday and she wanted to spend the morning with him and her son. With the continued stimming and agitation this morning I am certain not much would have been accomplished anyways. So I was happy to reschedule for tomorrow morning.

All morning I reminded Sahara of the agenda of the morning that seemed to last forever... Relax, Get dressed, Brush teeth, OT, Speech, Lunch... If you don't know much about autism, routine is important to many of these kids (and adults).

So, when we pulled up to the Children's Close to home and the parking lot seemed much too empty on a Monday morning... I got a little nervous. I told Sahara to wait. Being parked right in front of the main door I was able to quickly jump out of the jeep to check the front door. It was open... whew!!

I nodded at Sahara; she took off her seat belt as I grabbed my laptop and book (Eclipse) from the passenger front seat. Sahara must have have been anticipating OT as much as I... instead of running down the sidewalk she walked right into the building and sat down in the empty lobby. I said to the subbing receptionist, "Sahara is here to see [J] for OT, then [C] for Speech."

I wasn't prepared for the response, "Oh, they aren't here today."

"What!?!?"

"I am sorry, the lab and x-rays are only seeing people today," she sheepishly replied.

"I specifically asked [C] and [J] 2 weeks ago if we had therapy today and they both said 'yes'!!"

Avoiding all eye contact she said, "I am sorry you will have to talk to them about that."

I expressed that I was upset because I not only asked one therapist, but two!! if we had therapy today and was told "yes" we did. I continued that I thought this was inappropriate for therapists who supposedly specialize in autism... certainly they should know the importance of routine for these kids on the spectrum. I didn't get a response to that...

The lobby was eerily quiet... I approach Sahara and try my best to explain why we had to leave right away. The look in her eyes said it all... no comprehension!! Instantly I am pissed, "I expect more professionalism than this from Children's Hospital!!," I snap.

I know it was not this green receptionist's fault... but I was so upset. My child was pulling away from my hand and running through the lobby clearly not comprehending why her mean mother was trying to force her to leave when we had just arrived here.

Maybe the sting was worse because we so desperately needed the platform swing today, maybe because I was looking forward to consulting with the SLP about creating a picture schedule for the summer or maybe, just maybe, because in the recess of my mind I remembered that last sting I got from the SLP.

She was explaining to me how she is going to work in the Down Syndrome Clinic, "You don't know what it is like to work with autistic children all day... "

I must not have held a good poker face because she failed miserably at saving face, "I mean, you get to go home after your appointment, I have to stay here all day, day after day. Autistic kids are hard to work with"

WTF?!?!

Where did she think I went after our appointment???? I am just really annoyed with therapists, doctors and other so-called professionals who haven't a clue what a parent of a child diagnosed with autism goes through. I can garuntee you that their degrees and experience have little comparison to the expertise us mothers and fathers on the front line have. How dare she imply that her JOB was more difficult.

I wasn't surprised when I got home to find a voice mail from the SLP on my answering machine. However, she stated that she had arrived to work and was told to go home because it is a holiday; they won't pay overtime. This doesn't add up to me as I know that she works 12 hour shifts on Mondays, so if she had arrived to work it would have been at 7:00 am not 10:30... a half hour prior to our appointment and a half hour after I reamed the receptionist.

So much for my hubby's relaxing day off with the family. After I vented, we have spent most of the day refereeing between the girls and consoling Sahara in her many many melt downs. In addition, Emily had a low grade fever and was grumpy; I was PMSing; and my dear hubby was ready to crawl under a rock.

Here's to a better day tomorrow...

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