Autism Awareness Month 2012, Day 3

Autism Awareness Month, Day 3:

Sometimes I feel guilty for finding blessings in autism when my daughter has to struggle at everything. Sometimes I HATE autism; yet at the same time I have learned to LOVE EVERY aspect of this experience. It is the most dichotomous, yet empowering experience I have ever faced. Through prayer, meditation, a strong marriage and taking my own power back I have learned let go of the anger to embrace the possibilities.... and I thank God daily for trusting me with the two most amazing daughters ever!! There really are blessings in the world of autism, sometimes you just have to still yourself to see them. ♥

Read More

Autism Awareness Month 2012, Day 2

Autism Awareness Month, Day 2...

National Autism Awareness Day:

If you are not intimately touched by autism become aware:

1:88 kids are on the autism spectrum!!

Patience, empathy and acts of kindness go a long way!

You bump into our kids in the store, church, parks, streets, school events...

Remember our kids are just like yours with feelings and stuggles and triumphs the same.

♥

Read More

Autism Awareness, Day 1

Autism Awareness Month Day 1:

Autism does have gifts inter-woven... One unique gift is the deep friendships we make along the way w others on the journey that might otherwise not manifested. I have great friends across the board, but there is just something extra special about my autism friends/family. ♥

Read More

Autism and Breastfeeding

So, you might be asking what breastfeeding has to do with autism. Well, nothing really… and yet everything in our corner of the world.

April is Autism Awareness Month; I have blogged on just about every topic pertaining to autism… except breastfeeding. Which, to me, seems a bit ironic as that is the single activity that began our quest to discover that autism was in our midst.

Another reason I find this strange is that I am a breastfeeding advocate. In fact, I dedicated a whole chapter in my book, The Mother Consciousness, to breastfeeding. The content ranged from the obvious (the health benefits, economic afford-ability and expressing milk) to the taboo side of nursing (reclaiming the breast as a rite of passage into motherhood as opposed to a sexual icon, nursing beyond infancy and tandem nursing non-multiple birth siblings).

Then of course, there was my self-proclamation of being an expert on breastfeeding. Obviously this was purely my own experiential honorary achievement that I had created. The Mother Consciousness was inspired by my innate desire to explore how the Jungian maternal archetypes had influenced my mindful decisions to partake in natural childbirth and my inherent choices within early motherhood. However, even with years of mindfully nursing my own children, I still was not aware (because it wasn’t evident yet) that nursing also would play a major role in the diagnosis, socialization and developmental growth of my autistic daughter.

The circumstances and awkwardness of nursing my second born daughter offered the first inkling that something wasn’t ‘quite right’. I vividly remember lying in the bed nursing while making googly noises – and feeling a sinking sensation when I noted she wouldn’t look at me or respond to my obvious attempt to interact with her. She stared off in space… into a private world of her own.

I thought this was an odd reaction. So I started to softly… then not so softly, say her name. She didn’t even wiggle a wee bit. I began to have flashbacks of her older sister nursing at this age (5 months) and she would gaze up into my eyes and reach for my face. I felt a panic in my heart as a siren was going off in the confines of my own mind that something wasn’t right.

Over the next two days, the same scenario repeated itself over and over… I increasingly grew more anxious. I knew in my heart that something was wrong, but I did not know it was autism. In fact, it would take years to get professionals to listen to me that something was wrong.

On the Eve of her first Christmas, I finally uttered to my husband, “Honey, we need to talk.” He got that look he gets in his eyes when he senses something is wrong. I took a long deep breath, “I noticed something the other night… well, I am concerned.” (a long pause) “Every time I nurse Sahara she just stares off into space... You know, Emily always gazed in my eyes when she nursed. But I have been thinking… and I don’t think Sahara has ever looked up at me when nursing.”(an even longer pause) “Not even once. She also doesn’t respond to my voice. Do you think she could be deaf?”

I saw tears immediately flow down his cheek as I validated some of his hidden concerns. My heart broke in a million pieces that night. To make a long story short the pediatrician blew our concerns off and said it was because I was a new mom. I reminded him that I have been a mother for 5 ½ years and know when something isn’t right, and there was something wrong…

Fast forward 4 years… Sahara was finally diagnosed with infantile autism on Halloween day 2008. Every time I tell this story, emotion catches in my throat as I think about how she gazed off into space when I nursed her and how the psychologist told us to prepare to institutionalize her because of the severity of her symptoms.

But I also remember her tiny fingers wrapped around mine, caressing me as if to say, “I am in here Mama… don’t worry.” And I think about how, even with the autism, she was able to seek my comfort through my motherly breasts when she was hurt, upset or frustrated just like her nuero-typical sister. That somehow, innocently touching my bare skin brought her the safety she needed in a world that was full of triggers and overwhelming stimuli for her; I was her comfort and transitional object.

I think about her eating disorder (children with autism often are picky eaters or experience pica) how I was always reassured in the fact that she breastfed beyond infancy, so I knew she was getting the most perfect nutrition. And how when she got sick (children with autism often have gut issues and compromised immune responses) I knew that she was still getting healthy anti-bodies through the breast milk. And even though she was catatonic for the first four years of her life, she was able to still bond and interact with me at a level that is beyond comprehension.

I venture to say that the mindful act of breastfeeding and attachment parenting may very well have been the catalyst to help set the stage to pull her out of catatonia when even the psychologists said institutionalization was going to be the only option. I am not ashamed to say we nursed her way beyond toddler-hood. I do believe that when she did not have words, that this motherly act alone, was a way for us to connect and interact with meaning. And when I see her breastfeeding her baby dolls and nurturing them through this intimate act today, I find peace of mind in knowing that she is learning how to express care, love and compassion for another human being.

This past weekend she was on the couch cuddling with me when she started to repetitively poke my breast with her small pointer finger. I smiled at her when she gazed up at me (perhaps I even silently rejoiced that at 6 years of age, she is finally able to gaze into my eyes without hesitation and that by some means we are able to create and nurture those building blocks that she missed during infancy).

What I didn’t expect in that moment, though, was for her to say, “Milk all gone.” I nodded yes and she continued in her broken early speech pattern to say slowly with much effort, “Milk broken. Mommy doctor. Doctor fix Milk.” Tears welled up in my eyes as my heart fell in love with this child for the ten-millionth time!

“No, the doctor can’t fix ‘Milkies’. Sahara is a big girl now, so the milk went bye bye.” We sat there in silence, her fingers continued to poke my breast as our breath synced together just like when she nursed.

“Mommy?”

“Yes, Sahara?”

“Milk all gone?”

“Yes, Milk all gone.”

“Sahara sad.”

“I know. Mommy sad too.”

So why is this interaction so important to share? Simply because it is the most concrete, expressive, lengthy ‘conversation’ we have ever shared together. Amazingly, the act of breastfeeding my daughter continues today to create opportunities for advancement.

If I had one thing to share with young women or expectant mothers, it would be… if you have genetic markers of autism and even if you don’t, seriously consider nursing your child. Nursing your child is not just about feeding him/her. Nursing your child is about cultivating essential human bonding and stimulating neurodevelopment and immune enhancement. Nursing your child could just be that vital gateway for future possibilities to manifest… and that could be ‘utterly’ colossal.

Read More

Still Autism Awareness Month: Your beliefs are important.

It is April 11th and it is still autism awareness month... Are you aware?

When Sahara was just 4 and a half, we were told to prepare to institutionalize her!!

Why?

Because she was catatonic, non-verbal, socially withdrawn, and we were opting to not participate in ABA therapy.

Once we got the confirmation of the label... the denial subsided... and we got to work. It was hard; I will not sugar coat it. I worked 24/7 while trying to make life seem as normal as possible for my whole family.

TODAY she is no longer catatonic, she is a funny, intelligent, determine little girl with potential beyond your comprehension. No, she isn't cured. Yes, she will always have to work a little hard than everyone else. But, we have undeniably made great strides and are well on our way to creating a typical life for her. Typical? What is that anyways?

Never except sub-standards for your child.... your thoughts & beliefs are more important than prognosis from professionals... if you believe she can, she will!!! Sometimes that is all there is to give me strength to go on. I am glad we did it MY way... Sahara will do all of the things that they tried to tell us that she wouldn't... and more!!

Why?

Because her father, her sister and I believe she can... and now we are finding out that so does she. And that belief is what gives us opportunities and empowerment. My expectations are higher than anyones, who better to be her life coach?

This isn't airy-fairy wishful thinking. It takes time, energy, sweat, tears and let's not forget lots of money that never seems to be there... but all of those things are delicately balanced between laughter, joy, hope and unconditional love.

We have come a long way in a mere 2 years... speech, eye contact, parallel play, interactive play, expressive communication, gross and fine motor development... and the catatonia? Gone like the wind.... never to come back.

SAHARA WILL DO OR BECOME ANYTHING SHE DESIRES.

WHY?

BECAUSE SHE HAS THIS FAMILY BEHIND HER....

AND WE SEE POTENTIAL WHEN NO ONE ELSE DOES...

ROCK ON LITTLE GIRL!!!!!!

Read More

Autism Awareness Day: In a nutshell

I am a proud mother of 2 daughters; one who is exceptional beyond this label, and the other, a sibling who is just as spectacular. It took us 4 years to get 'professionals' to listen to us bc of gender issues. We are addressing Autism naturally without ABA nor meds... want to know more about autism or how it affects females.... ask me any day not just on this hallmark day!! I have met the most diverse and supportive folks on this journey... to you I am eternally grateful. My husband is supports me and the girls unconditionally on this journey. Autism has strengthened our relationship. We have learned, over tears and triumphs, that Autism isn't the end of dreams, but a beginning of new ones... I have high expectations for both of my children and am busting through the limitations certain 'professionals' put on them. Yes, having autism in our lives sucks at times, but it also is extraordinary. My daughter is incredible and has taught us more than you can imagine. Thank you for sharing this journey with my family.

Read More

Unity Among the Autism Community

On the eve of April - Autism Awareness month, I feel compelled to get this off my chest. See I have been holding my tongue for some time and I absolutely cannot stand it anymore. The ‘infighting’ among the autism community grates at my inner core and I find myself needing to come forth in order to release the charged feelings I am experiencing ... I understand it may not do any good, but at least I will have said my peace.

At a time when autism numbers are soaring, we need the mainstream folk to become involved. And yet, our own community cannot support one another despite our differences … How, I ask, can we possibly expect others to take a stand and advocate for us, when we can’t do so for each other? It is time to set aside our differences and unite for the greater good of the autism community as a whole.

Our children (and adults) diagnosed with autism need support, protection, advocacy, and empowerment as well as other necessities.

Personally, dare I say, that I actually relate to both sides in my own unique way; the neuro-diveristy and the pro-cure. I don’t think that makes me hypocritical. I am just a concerned mindful mother wanting the best for her child.

The nuero-diversity camp promotes that we accept our differences and honor each person in their unique sense of self. Truthfully, that really is the foundation of my personal advocacy group, Exceptional Beyond Labels. I, also, believe that despite any label (autism, aspergers, pdd-nos, ect) that each person behind the label is just that… A PERSON! They are a person not defined by this label, but rather a person defined by their unique individualization... And that person is phenomenal and capable of anything given the proper tools. Autism is not something to be ashamed of, in fact, I believe it is those on the autism spectrum that will make profound changes in the systems that are no longer working in our world(but, that is a whole different blog entry). I believe that all research and programming and legislation should include parents and adults on the spectrum ... I agree that we cannot determine their future without their input!!

On the flip-side, I find myself praying for a cure and requesting unbiased 3^rd party research. I long for a day that the ‘infantile autism’ label that limits my child is shed like the skin on a snake. I am motivated to prove the diagnosing psychologist wrong when she said to us without a blink of an eye that our young daughter would never have a productive career, meaningful friendships, marriage, a college education or independent living. I have read countless books and surf the net to wee hours of the night to discover what others are doing to help their child diagnosed with autism to 'recover', so that I might be able to pull her further into our world closer to a functional life. I have tried diets, alternative therapies, holistic medicine, traditional therapies, and anything else that was within my arm’s reach. I want, like every parent, to have my child have a bright future full of possibilities.

I don’t do these things to change her core essence, but to remove barriers so that she can have a productive future; to improve her quality of life; to reduce her fundamental frustrations that are demonstrated through a profound expressive and receptive speech delay, an heightened autonomic nervous system response, the sensory and auditory processing complications, a curious eating disorder, awkward socialization skills.... let's not forget that I do this to end the never ending fear of her risk of elopement ending in a catastrophe or to end the nightmares about what will happen to her if her parents were to tragically die or to end the fear that resides in the knowing that if someone were to violate her she would not have the functional words to tell me (and the list goes on) …

I have come to understand that some cases of autism (possibly more aspergers than infantile autism) is genetically based and hereditary while other cases are more environmental. Our geneticist concluded there was no biological foundation for the autism, yet denied environmental possibilities. That doesn't make sense to me. How can biological and environmental factors both be ruled out? This is a hot topic and has caused some to even proclaim hatred towards a certain celebrity. However, I cannot rationalize for one second how the toxins in the vaccines could possibly be safe in the amounts given to the tiny bodies our child inhabit. Yes, I know that the CDC and FDA have cleared them to be safe but common sense tells me otherwise. (I am not going to elaborate on this as there are many resources out there stating the facts… go check them out). I, also, am concerned that no one is talking about maternal vaccine history and its effects on the offspring she bears or the Rho-Gam (Anti-D) vaccine given to pregnant women with negative blood. If the toxins cross the blood brain barrier during critical fetal nuero-development could that not affect the brain and cause autistic-like symptoms?

Now, I do believe that the camp that takes this stance should be less cynical and sarcastic in their presentation … tastefulness goes along way. I wonder if a certain publication ever considers that their point of view would be better accepted by mainstream, the autism community, government, and big-pharm if they added a little more class to their presentation. But, their opponents create face book pages like I Hate Jenny McCarthy. So, what do you do?

This has to stop. We have to have a truce!! We have to say we can understand both perspectives and respect the needs of both parties. We have to stop organizations getting rich off of the challenges our children and adult friends diagnosed with autism face. We have to unit for the common good for all involved regardless of etiology beliefs! We have to unite to promote advocacy, education, safety, insurance inclusion, 3^rd party research, affordable early intervention, awareness of alternative and holistic health modalities, resources on self-esteem building, education advocacy and inclusion, elimination of seclusion and restraint, as well as promote things like education for mainstream professionals like the police, firemen, teachers, store clerks, life guards, and public transit authorities.

We have to put aside our differences for the greater good of our community; a community desperate for answers and desperate for acceptance.

Read More