Exceptional Beyond Labels… One Year After the Autism Diagnosis

It is a quiet Halloween morning…. As I sit here, I reflect on how today marks the one year anniversary of Sahara’s formal diagnosis of Autism Spectrum Disorder. Although I thought this would be an emotionally charged day, I feel quite content… and even optimistic.

SAHARA...

When Sahara was 5 months old, like many others on the autism journey, we suspected a hearing loss. The pediatrician nonchalantly dismissed our concerns, but there was always this nagging maternal instinct that something was not right. When we inquired about her speech delay at age 3 the doctor told us and I quote, “…some kids just don’t talk until they are 6.”

After another year of begging professionals to listen to us that something was wrong with our daughter, someone finally listened!! That opened up the door to many, many tests and procedures. She was formally diagnosed with autism spectrum disorder; which prompted even more medical tests. We found that there was little hope for recovery in the western model. In fact, one medical professional told us that she would never get married, go to college, or live independently… she suggested institutionalization. I decided in that moment to prove that professional wrong and became an advocate for my daughter.

We have explored many traditional and non-traditional modalities as we addressed her speech, social, sensory, fine / gross motor, dietary, sleep and cognitive delays. As we track our results, we see many successes and accomplished milestones. Being personally touched by autism has created an empowerment in my inner core. I dedicated my professional life to serving children and helping others in the mental health and alternative health system before this journey… I find it interesting that these collective experiences were cultivating a unique perspective that would be cornerstone to my daughter’s functional expression of life.

It has been exactly one year today since we uttered the word, “autism” in connection with Sahara. As I reflect about the progress we have made, I am reminded of a little 4 year old girl that was once catatonic, nonverbal, isolated in her own world, non-interactive, anti-social, clumsy, stemming vocally, spinning, eating only a few foods, exhausted from irregular sleep patterns, wearing diapers and having tantrums because of fundamental frustrations and sensitivities. That little girl has blossomed into a 5 year old expression of life… yes, my daughter will always see life through different colored lenses, but now we can see that she is exceptional beyond this label... and we are working on a life of independence and fulfillment.

As we continue to develop tools for her to function, we see that she can and will live the life of purpose while her parents hold as of high aspirations for her as her older sister. I even reckon it would be a hoot if Emily and Sahara became Paleontologists working side by side— like they do in their imaginative play together. And yes, maybe a husband, children and we can throw a white picket fence into the mix of possibilities!!

We have come a very long way in just 12 months. …And now as I look at this exceptional child beyond the label of autism, I realize that we have a lifetime commitment to supporting her on the spectrum, but we are dissolving the negative connotations that come with a label. She is Sahara Grace, not autism. 

I recognize that there is much controversy about whether or not you can cure a child of autism… I am not going to go into my perspective on that. However, I will say that Reiki and adjunctive services have started alleviating some of the major issues in this sensitive child. Daily her vocabulary grows. Yes, she still uses echolalia... but at least now we know she is capable of developing speech. Slowly it is emerging. We are seeing evidence of her yearning to interact with others appropriately, and is entering our world more and more. I am amazed how much progress we have made in just one small year!! Regardless of her level of function I will always accept her for who she is just like a parent of a nuero-typical child would. But, each milestone comes with a special joyful celebration.

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

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

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

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

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

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

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

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Yesterday I Hated Autism

Yesterday I hated autism; I love love love my daughter, but autism…

I wanted it out of our lives forever. It is like a bad rash on your ass… You know it is there, but others cannot see it and don’t know it is there. Yes, they can suspect something is wrong, but unless you let them in on your little secret they don’t know.

Sometimes it burns and itches like hell… all you can do is complain about this annoying circumstance you find yourself facing, but that doesn’t make it better. And every step you take has to be carefully thought out and orchestrated. The intensity of the burn causes you to be irritable, short, and emotionally violent.

Sometimes you move in slow precise ways to ease its agony and those paying close attention see something is bothering you but they just can’t put their finger on what it is. Then there are those you trust enough to tell all about this freaking rash on your ass; they show empathy, offer ointments, and a comforting shoulder, but none of them can make it go away. In fact, even if they have a rash of their own they still can’t possibly understand how YOU feel about YOUR rash.

BUT, Today I embrace autism; I love the lessons autism teaches me.

Autism...

teaches me patience

teaches me tolerance

teaches me about my weakness

teaches me that I am human

teaches me that I have strength beyond measurement

teaches me the true meaning of unconditional love

teaches me that the world is full of differences

teaches me to be resourceful

teaches me to slow down

teaches me to be creative

teaches me diversity

teaches me that God trusts me

teaches me that I am my child's biggest advocate

teaches me that my child is exceptional beyond labels

teaches me that we communicate beyond words

teaches me that we love beyond actions

teaches me...

(By no means, does this post have any derogatory intention meant towards my child or anyone else facing the autism label... it does have to do with the system, attitudes, IEP's, and the moments of helplessness we all feel on this journey. It was my expression about a day that really sucked in the world of autism.)

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National School Lunch Week Is A Farce

IF "Healthy school meals contribute to academic achievement and more productive days in the classroom", then why does the same organization making this statement offer processed, over priced non-nutritional garbage to our youth for lunch?

It is national school lunch week, and I am disgusted with the contents of our lunch selections. This week alone the menu consists of:

Monday:

Cheese Nachos or Hot Dog

Seasoned Corn

Assorted Fruit (not fresh)

Milk

Tuesday:

Johnny Marzetti or Texas grilled cheese

Tomato Soup

Assorted Fruit

Milk

Wednesday:

Pancakes w Sausage or Asian Vegtables w Rice

Hashbrown Patty

Assorted Fruit

Milk

Thursday:

Chicken cheese burrito or Cheesy Bread

Seasoned Green Beans

Assorted Friut

Milk

So, I am not a nutritionist and I do have so much more to learn about this topic. However, It doesn't take a dietitian to see that these lunches are full of complex carbohydrates. Certainly, most of this menu is tainted with high fructose corn syrup, pesticides, preservatives and artificial ingredients. Where is the real food? The fresh fruit and vegetables? A good source of protein?

Is it no wonder our children are struggling academically and socially? Yet alone, they are faced with childhood obesity and juvenile diabetes at higher rates than ever before. As they face a depletion of essential nutrients their minds, bodies, and emotions are suffering. I once read an article that said it would cost the parents $4 per lunch to provide a lunch like I am advocating...

There is no way a parent is going to shuffle out $20 per kid per week for lunch, right? Maybe or maybe not... I can't answer that.

But, I am not so sure that a healthy lunch would cost that much. I am not sure where they get there numbers... I spend probably half of that amount on fresh foods for lunches per child per week. (which is still less than the amount I'd be spending if I were to purchase their lunches from the current school cafeteria menu.) Knowing that the companies providing lunches would purchase in bulk, I don't know how they come up with these numbers.

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My Name Is Not Autism!

We have have been excelling in just about every aspect of this thing in our lives called autism; making progress with leaps and bounds. Yes, I know we have a long way to go, but it is in those seemingly small triumphs (like hearing a pronoun escape those lips) that we continue to aim for the monumental finish line. This is a race I not only got roped into without consent, but it is also one I will finish with vigor!

As we propel forward I have changed some of my thinking.... I have stopped saying that my daughter is autistic, instead I say she is diagnosed with autism. See if she is something it is here to stay. She is a girl... She is a sister... She is O-... those things won't change. But, diagnoses and labels can be (and are) removed.

My daughter in not autism, my daughter is experiencing autism.

My agenda is not hidden. My goal is to get my daughter beyond this label. Not for my benefit but hers. I know that will piss some people off. In fact, I know several camps that will claim that is impossible or that this is not all accepting of her. But, I challenge that. As we recover from the toxins that soared through her body as a fetus and infant we start to see glimpses of the Sahara Grace that would have been...

Is it wrong to want to know that child? Is it wrong to yearn for her recovery? Is it wrong to say that I won't stop this fight until the label is gone and she is able to function normally? Is it wrong to yearn to hear her thoughts, dreams and aspirations? Is it wrong to want for her to fit in with her peers without obvious deficits? Is it wrong that I get pissed off that her childhood was stolen from her? ... from her sister?

The answer is simple: no!

It isn't about the label... it is about the stigma, the deficits, the inability to effectively communicate, the lack of peer interaction, the sensitivities that interrupt the seemingly simple daily tasks, the freaking moments she can't tell me what is happening to her when I am not there to protect her...

We will conquer autism. Not because we don't love her for who she is today; that person's attributes are beyond words!! She is an incredible soul with lots of love, humor, wit, and charm. But because we want more for her than the constant feedback, "She is such a sweet child!" or "Isn't she pretty?" Yes, she is sweet and pretty.... but she is more that that. Often people say these things when the autism is in the forefront of her day.

I am sure they think this comforts me and makes me feel better. But, honestly it pushes buttons deep within me. She is more than a sweet child or a pretty girl... she is Sahara Grace, and she has so much she wants to teach the world, so much hidden in this fog that she wants to express, feeling that are bound in her, and accomplishments waiting to be recognized.

She is Sahara Grace... not autism!!

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