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.

Dear Autistic Friends... My Gratitude, Frustrations and Empowerment

Dear Adult Autistic Friends,

Thank you for debunking myths about being an autistic adult for me. Sahara (my 7 year old daughter) has gone from catatonic to achieving daily milestones... and I feel hearing your stories and befriending you has helped me set the bar high for this amazing child (when professionals said to institutionalize her).

Traditional therapy and educators didn't instill compassion and empathy in her. Nor did it teach her to strive for self actualization... which she WILL achieve some day. I have done that (along with father and sister.) Together we have worked day and night to see that she have the highest quality of life. Daily we meditate and focus on what our goals are... not the fears and struggles. If we got caught up in all of the woes than we would have little progress.

I have found gifts wrapped around this journey... and each of you have helped me achieve this. Yes, I know there are struggles... anyone who has read this blog knows I understand the raw side of autism. But, what I don't understand is how you set limits on what your autistic child will do 20 years from now. How do I know she won't get married? Or have a fulfilling career? Or travel on speaking engagements about her autism journey?

I don't... like I told the psych, "We don't have a crystal ball".

But, ironically... the extreme opposite is that I also get frustrated when outsiders talk about the gifts of autism... cause they do not know that raw emotional pain we go through and how much harder our kids have to work at seemingly simple things. I get offended by their assumption that they know more about this journey than us.

They do not see how hard I have worked to pull this child out of catatonia... when told we couldn't. How my persistence and attachment parenting taught her compassion, emotion and empathy... when told she couldn't. How we had to scrape pennies to get natural remedies... when they told us they wouldn't work.

I have worked hard at giving her the best chance at a life she so chooses... because she deserves that and so much more. And she has worked even harder to meet all of our demands on her young being.

Yes, like I always say, we have come a long way... but we have even longer way to go. But today I am optimistic that she will be a productive citizen and have all the opportunities her NT sister has. I know she will always see life through different colored glasses, but she is exceptional beyond the label and limitations of autism... as are all of you.

Thank You for your compassion, understanding, encouragement and friendship... it has helped empower me as a mother of a young girl on the spectrum.

~ Alterna-Mom

Morning Gratitude

Morning Gratitude: Thank You God for trusting me enough to be the mother of these special kids!! Last night I was listening to Sahara talk, yes talk, to Emily and her BFF and I said to Jim... THIS is the same child that the psychologist wanted us to institutionalize... even through all the advocating and tears, I am so humbled to walk this path with them. THEY give our life deeper meaning and for that I am forever grateful!! ♥

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.