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.

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.

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!))

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.

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.

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…

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...

Fireworks, Ignorance and Stimming

I was all prepared to embrace our freedom and have a great time with the family. We were going to arrive a bit early, find a remote parking lot and watch the fireworks from a distance to avoid the noise, smell, people, traffic jams... if you or your loved one has autism you know why; sensory sensitivities are debilitating!!

Okay, so plans didn't go as expected... we did arrive early but the traffic was insane. Sahara kept signing for 'sparklers' and I tried to get her to understand that fireworks are like sparklers only in the sky. People were blowing their horns, playing loud music and one even yelled 'fucker' at me when I hesitated to go forward because he was looking down AND heading straight at me... I know it makes no sense to me either. My hubby told me to shake it off... I tried, but his words stung!

Of course I was already feeling on edge... we had had pizza for dinner a couple of hours earlier and prior to that Emily and I shared nachos and pop corn at the theater. I am sure my blood sugar levels were soaring; I was short and snippy... fully aware of it, but I couldn't stop. It is so frustrating to have emotions that you have no control over... really, really frustrating.

Anyways, back to the fireworks... we found a parking lot right off main street which only had 2 cars with a perfect view towards the designated show. It was close enough to have a good view and far enough away to zoom away if needed. We backed in next to one of the cars there and opened the back to my jeep. The kids forced themselves to get comfy in the blankets. Ahhh!!

Being on Main Street we were privy to the late traffic jammers... people can be so rude when the are stressed and overwhelmed. I am certain they lost sight of the whole reason we were there in the first place... to celebrate our Freedom!! But, I had too... Freedom was the farthest thing from my mind.

A few kids started throwing snaps at each other's feet; it would have been cute if it didn't make Emily wish she had brought our's. Then they pulled out the sparklers; now Sahara was even more insistent in her signing, 'sparklers?' I was almost relieved when their supply ran out, until they started to set off smoke bombs and yep, we were down wind!!

Finally, the kids settle down and in whips a blue van right next to ours. They are blaring base thumping so loud my inner core thumped with it. Sahara puts her hands on her ears as I give them a subtle look. All the kids in the van are banging their heads to this noise along with the adults. I am thinking hard how to approach them to let them know that our child has a disability that causes her to be sensitive to certain sounds... I am at a loss and certain I could find no such words. And even if I thought I had, they didn't look like the type of people to offer me compassionate understanding.

In the mean time Sahara starts to hum... I am sure she is trying to block out the base thumping. Five young kids jump out of the van and I hear them using words like "Jesus Christ" "Fuck" and "Retard"... my blood is boiling!! I try not to let it show, but I am sure everyone knows that I am pissed... especially my own family. I am certain I am ruining their good time.

I start to deep breath and ask for patience.

Suddenly a red van pulls infront of our jeep... blocking the exit path I carefully orchestrated. I am okay though.... I quickly decide if it gets much worse (and trust me it did) I could just back our jeep up onto main street and leave. My sense of relief is popped as the 7 people jump out of their van and plop a cooler full of beer and blanket five feet from the back of the jeep... they pinned us in completely!!

Not only were they blocking our view to the much anticipated (now almost dreaded) fireworks, they lit cigarettes and cracked opened beer cans... all down wind. I feel completely assulted.... thumping base on one side of me and cigarette smoke in my face... I look at my family and yearn to protect them. I can only imagine with their heightened sensitivities how they must be feeling.

Both girls found their way on the ground to play in the dirt and gravel... I presume they were seeking a sensory activity to soothe their assaulted systems... playing in dirt is always gratifying to me. It feels so calm to have the smooth grains go between my fingers and palms. They looked filthy and it made me chuckle... leave it to my daughters to find their way to the Earth to ground themselves from their environment.

When Sahara is done she is more agitated than before because now she is dirty and wants water and a towel to clean herself up, "Why didn't I better prepare?!?!" She starts to orally stim and of course our assailants of the night begin to snap looks at us... they are oblivious that it was their rude disregard that started the vocalizations. Of course they are too self absorbed to notice andmost likely ignorant of autism to comprehend the discomfort my child is experiencing. In fact, I am certain that the first van load turned up the base intentionally when the noted my obvious disapproval.

As the loud show begins Sahara's face lights up! Once again, I am feeling tender about a moment that demonstrates how far we have come... prior to this year, she had never taken note to the beautiful shimmering light in the sky... she is breathless and utters, "Wow, it's beautiful!" I well up with emotion... I note to myself that if only everyone could see this through her virgin eyes that they would experience the true meaning of Independence Day. Liberty is within her as autism loosens it's clutches.

Emily is speechless and rolls over onto her tummy. I am certain she is categorizing each design so she can recreate them in her journal over the week. My heart aches at the pain she has endured in the shadow of autism... she takes everything on. I am relieved at the moment of loosing herself into the show. I presume this is why I try to do this every year...

I want her (both of them) to have a chance at normalcy as much as possible. I presume that the notion of normalcy is over-rated and romanticized... but I try. Sometimes I think that it is the siblings that have a more difficult time. They carry burdens with them... well, at least my girl does. She worries about her sister constantly and always puts her first, but she struggles with quiet resentment too. I try my best to support her, but it is hard!

These are the things that wake up my demons inside. I see the rugrats in the van parked next to us... dis-shelved and unruly; talking worse than sailors as the parents throw out threats of physical harm and the kids retort with disrespect. I think about how hard I try to be mindful about everything I do, and how guilty I feel for being moody (probably from the sugar levels I am learning) and I become infuriated at the obvious injustice.

Then I remember, better me than them. I can handle this... I know I can!! We will get through this moment of torture just like others and be stronger and more empowered than the moment before.

The fireworks are loud even at a distance and we are blocked in; Sahara begins to run in circles while humming. I don't even try to intervene... I know this is the only way she has to soothe herself in this moment.

On the way home Sahara was stimming with intensity; rocking, hand flapping and humming. I knew she was trying to calm herself down, but nonetheless I felt helpless. I wanted to make her pain and discomfort subside. However, I know when I am upset I am about useless to her... well, that probably isn't true, but it certainly feels like it. I know I need to tend to my needs so I can be better present for both of my kids... and let's not forget for my husband as well.

I am not sure we will do this again next year or ever... As for today we have less stimming, but it is still present. I am sure her system is trying to re-regulate. I hope someday that others in our global community become aware of the sensitivities and impact they have on this generation of youth.

A Checker, A Cough and A Deal With GOD!

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...