Why I Blog

Just feeling the need today to re-iterate why I blog...

My blog is a place were I explore my feelings and experiences that occur within the web of my motherhood. It is a safe place where I execute my right to freedom of speech. The beautiful thing about the art of journaling is that by purging words onto a piece of paper (or monitor screen) you release them. In doing so, clarity of a situation, experience or emotion may come forth. In making this journaling experience public, I hope that other parents (especially mothers) can gain wisdom, strength, and a sense of community from my entries.

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!))

IEP Season

I have come to understand there are 2 different cultures of moms in the month of May... the moms counting down til summer break just so they can count down til school starts AND the moms who are in the midst of IEP-season. No judgement.... just keenly aware of the differences right now.

I used to be in the first culture (minus the countdown for school starting – I always dreaded seeing that big yellow bus pulling up to take my children away.) But once apon a time, May was the time of year to make summer plans and get all excited about the unlimited fun possibilities masked as summer vacation... I miss the simplicity of that lifestyle.

But that is in the past... now, I dread May (not really I love May, but I do dread IEP season). The awkward red tape that is surrounding our special children's education is very irritating to me... let’s face it the IEP really is a bullshit document. You never get what you think your child needs and the services never seem to be quite enough. And the teachers always say they are helpless while the people in suits sitting behind desks in a cozy building making 6 digits are really calling the shots.

I often wonder if they took pay-cuts, could our children get the services they deserve? This isn't a matter of whether or not a child will go to prom (and I guess sometimes it is), but their education really is about their future.... their life and potential. I suppose, as an administrator, it is easy to clock in, do your job and clock out. But for us parents it is a 24/7 lifetime commitment.

A commitment to a child... not a number, a name or a budget... but the living, breathing human being who has unlimited possibilities if given the proper support and tools. It shouldn't have to be this hard to secure our children a free appropriate education (or therapy, but that is another blog entry).

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.

Breakfast Success

Am I an overachieving mother?

Perhaps!

This morning for breakfast I made...

Sahara ~ Bacon, Fresh Strawberries and a Smoothie. After I delivered it to her (in bed) she said in a sweet 'I love you' sort of voice, "Downstairs, Mom." I suppose she was happy with her selection and just wanted to happily munch while watching Angelina the Ballerina by herself.

Emily ~ Cream Cheese and Homemade Berry Jam Stuffed French Toast, Bacon, Fresh Strawberries and OJ. She, too, is feeling the need to be by herself this morning and is watching Star Gate Atlantis in her own room. (I get sad sometimes about her new desire about having her own space, but that is part of the growing pains of motherhood.)

Mom ~ A Mushroom, Spinach and Cheese Omelet, a Banana and Hot Cup of Coffee. I am basking in the silence of content children in my midst with the fresh breeze coming through the open window. But, I know this moment won't last long... as is it almost time for the noon crunch of getting ready for the bus, then 5th grade home school goes into full swing. Today we move onto fractions and I am actually secretly looking forward to finding out how Junie B Jones is going to get out of the pickle she is in. Or maybe I just like hearing my daughter read...

Dad ~ Well, truthfully, I don't know what he had for breakfast. I intended on waking up early to make him something, but he was already off to work when I rolled out of bed at 7:15. I hope he is having a peaceful day in the pod.

I feel satisfied in this moment. I hope you all enjoyed your morning too...

Mamapalooza Columbus Spring Festival 2011

MAMAPALOOZA COLUMBUS SPRING FESTIVAL 2011

COLUMBUS, OH (5/14/11) - -

Mamapalooza Columbus, a regional branch of New York’s Mamapalooza Inc., is providing an empowering Spring Festival again in Columbus, Ohio. This fun mom-centered, family-friendly, indoor-outdoor festival will take place Saturday, May 14 12:00Noon - 6:00 p.m at WholeKids Pediatrics & Yoga,1335 Dublin Rd., Columbus, OH 43215.

The first 100 Moms through the gate will receive a re-usable environmentally friendly bag full of goodies, coupons and more! Attendees can take part in a silent raffle, delicious food, LIVE music, and visit a variety of vendor/informational booths.

Dr. Dhanu Sant, MD FAAP will be just one of the many presenters that will be focusing on mother and child issues. Other presenters will be Hiliary Frambes of Parenting.com & Mom Congress, Alissa DeRouchie of Sprout Soup, Eileen Clary of HandyGirl!, and Erin Giddens of Young Living Essential Oils.

Mamapalooza Columbus will provide a safe space for the children to participate in arts and crafts, a creative mural, sing-alongs, story-times, family yoga, face painting and The Columbus Fire Safety House. There will be a nurturing space for nursing mothers too!

The full line-up of many talented mama-musicians & bands that will be rocking the stage include Tenara Calem, Vanessa Prentice, The Ginger Lees, Wicks & Wonder, Columbus Women’s Chorus, Megan Cameron, Za Unit & The Angry Men, One80, The Mamas & The Papa, Jerry & The Hashbrowned Seagulls, Randi Mockensturm, Lost Hollow, Katanya Ingram, Joanie Calem and Elliot 12trees.

Mamapalooza Columbus Spring Festival 2011 is presented by Sprout Soup, A natural family store. WCBE , Central Ohio’s NPR is the festival’s media sponsor. 10% of proceeds will benefit Amethyst Inc, a local women’s shelter. You can connect with Mamapalooza Columbus! on facebook.

Admission: Adults: $5; Children: $1; Families $10

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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!!!!!!