Halloween Nights

Halloween is around the corner…. In fact just 10 days away.

It is a super-charged time for me. Firstly, it brings up significant memories for me. Secondly, this Halloween will be the 3^rd year anniversary of our daughter’s formal autism diagnosis… A day our life changed forever!

However, on that Halloween in 2008, I came home and I couldn't breathe…. I was in a stupor for 3 days. Ironically, in hindsight it reminds me of how I felt in the hard plastic masks we couldn’t breathe in as a child; they got unbearably hot as the night went on… which was odd since we lived on the water and the wind chill was certainly cold under the plastic princess dress that didn’t let you move properly and was sure to tear before we made it down even the first street in Jamestown.

No, I didn’t grow up in Virginia…. I don’t know how the community got the nick name other than there was a street close to our Catholic Church called James Street. And the little neighborhood nestled between Lake Erie, the park and the Catholic Church was known as Jamestown; everyone knew everyone back then. All the kids attended the K-12 school and all their parents had gone to school together and their parents and the parents before them.

(This was a nice part of growing up in a small Ohio town.)

On this night, all the cars from the families that lived on the outskirts would roll in and hundreds of kids would pave up and down the street while their parents were nestled warmly in the car waving to the elderly folks on the doorstep. House to house… until the last house of the night… Grandma’s House! That was the best stop, not really because it was Grandma (although this is one of my fondest memories of her)… but she was sure to give us the best treat of the night!!

We would pile back into the car and Mom would remind us not to eat ANY of the candy in our pillow case (our make shift bag) except the one from Grandma; of course because that would be the safest piece of candy in the bag. I am not sure what was in the news those years… I was little, but even though everyone knew everyone, we were not allowed to eat one piece until our parents checked the loot to make sure it was safe to consume… with no pins or tears in the wrapping.

On the way home, Dad would drive around the horn (the quiet peninsula on Lake Erie; another nickname I am not sure the history of) with the window cracked just enough to flick his cigarette ashes as we excitedly pestered our Mom until she said, “Okay, now you can eat your Hershey Bar!” Grandma’s Candy Bar was surely THE best piece of candy in the bag!!

Other memories float in the recess of my mind like the year my Brother made a homemade costume for the Fire Station Costume Contest… a huge pumpkin made out of mesh wire and newspaper with glue water painted bright orange. Not only did he win, but he fell walking down Jamestown and rolled down the street… Hysterical even to an 8 year old!

Or the year when we were much older and my siblings took me to my first Haunted House…. Which was pure terror even for a 16 year old. The ‘werewolf’ (not the warm and sunny kind that Jacob is in New Moon) picked up on my fear and ran with it. He wouldn’t leave me alone as we waited over an hour in line to go through… I was so scared I PICKED MY BROTHER UP and barricaded myself between him and a large tree. Mind you I was a tiny adolescent… could blow away in the wind; Fear and Adrenaline was my strength!! On the way home we laughed so hard we cried.

Halloween was a fun holiday!! As I moved grew older I still came home during my college years, dressed up and went Trick or Treating with my niece in Jamestown…

My husband and I had our first date on Oct. 27, 1988! We were supposed to go to a HauntedHouse, but ended up at

Halloween 4: The Return of Michael Myers.

Every year since, we watch a scary movie in honor of our first date. On our first Halloween Married, we went to a costume party as a Biker and his Bitch... we had a blast when no one recognized my new hubby! We went home the next day to celebrate what unknown to us would be my Father's last birthday. My Dad about flipped out when she saw my fake tatto... he thought it was real!! Of course, I milked the situation as best as I could until I thought he was going to kill me.... not really.

As we became parents ourselves, my love for Halloween continued. I loved seeing my little ones dressed up as little cows and ladybugs!! Of course they never ate the candy; I would take it in to my office and give it to my clients. On my oldest daughter’s fifth Halloween she handmade her costume…. Tinker Bell!!! She picked out the fabric, cut it, hand stitched it… for weeks she worked diligently on it. Taking pride and care in each stitch…

On that Beggar’s Night, we went Trick or Treating with a group of other parents and their kids. They were on a mission to get as much candy as possible, running from house to house. One mother had our whole route planned out to hit the most houses… as if she couldn’t afford to buy her own kid a Twix (said with a little contempt in my voice)! BUT, Emily didn’t go up to half the houses that night!! She danced n twirled like a real Pixie, while telling everyone who would listen about how she had made her own Tinker Bell Costume. She rolled down hills of leaves and was happy being removed from the drama around her.

Every year since, we have hand made our costumes… with a family theme:

Harry Potter, Toy Story, Fairy Tales, Egyptians, Puppies and Dog Catchers, And this year… Ancients!!

ANCEINTS… people or concepts of people that are from our past that still influence us today (Emily’s idea)… Ancestors that are from many many generations before us still bringing us enlightenment! Over the years, Halloween has become as significant to her as to me. I am sure on Nov. 1 she will be asking, “So, what do you want to be next year?”

On the Middle School bus yesterday, the kids were boasting about smashing pumpkins and taking the whole bowl of candy left on porches… my eldest daughter came home expressing how stunned she was. Emily said she couldn’t believe the disrespect and immaturity the kids were bragging about. When she called them on it, they gave her a hard time and asked, “Well, what do you do for fun then on Halloween?”

She, very matter of fact, told them she walked around with her family… They balked at her, but she continued to tell them about our family themes, and how her sister was diagnosed with Autism on Halloween 3 years ago. So for her little sister to design her own costume this year was a big deal; and supporting her sister was more important than the junk they were stealing.

She told me some of the kids got quiet, but the bully just went on with her rhetoric, but she didn’t mind. She said that she understands most families are not as close as we are… and she found that to be sad. She is very insightful… perhaps a true Ancient resides within her!!

This morning as I laid out our material and the intricate plans Emily has sketched for us for the construction of these costumes… I am reminded how Halloween has signified so many moments in my life! It isn’t about the loot and the monsters or the devil as some religious persons believe. It is about clean fun, family and creating memories with our children.

…This year will be no different. We will spend the next 10 days diligently working on our costumes for a night of family fun complete with Trick or Treating, Pumpkin Carving, Hot Homemade Chili waiting to warm us up afterwards…. AND FAMILY MILESTONES!!

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!! ♥

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.

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!!!!!!

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.

Autisms Sneak Attack on My Heart

It has been a rough week in the world of autism at the Richardson’s…

~ PICA reared its ugly head again… I do not comprehend how my daughter can eat foam off of the underside of the mini-trampoline, yet refuse to eat the wholesome yummy food I loving create for the family. (Although, I know this isn’t a logical quest meant to understand… Pica isn’t rational.) But, not only foam; toilet paper, foil, string… yak!! The thought makes me cringe. I try to focus in those moments that this is not a conscious decision… it is part of the autism.

~ She is still obsessed with fire. We have thrown away every candle in the house… but it is not like we can just curb the gas stove. I have looked at locks and nothing seems Sahara-proof. I wonder what the fascination is with the fire. …The cause and effect? …The beautiful flicker? …The control? Perhaps all of it… Regardless, the lingering smell in the house is haunting!!! The innocent, “nothinnnnng” is undeniably infuriating… The fear is grasping!! I acknowledge I may never sleep again…

~ With young girls in the house, I have an open door bathroom policy. I view it as a natural way to educate them about proper feminine hygiene and the like. Well… until I found Sahara this week… with a tampon and trying to insert it up her rear-end. (Did I state that gently enough?) Realizing she thinks there are only 2 exits down there; how do you explain the 3^rd to an autistic child with communication delays? Needless to say the tampons have been locked down with the other random items of mischief. But, I am still left standing… wondering… pondering… how do I teach her about the birds n the bees and body changes?

~ Which leads us to the next event of the week… usually when Sahara is too quiet… we worry!! When I went up stairs to check on her, the bathroom door slammed. Once I got in the room, I was horrified to find she had climbed the linen closet (top shelf) to get down a razor… well, it could have been worse. (I remember my niece’s first blood ridden trial shave vividly!) But, luckily Sahara was just left with razor burned arm pits (which really is bad enough)!! So, yes, now the razors are residing with the tampons under lock and key.

~ The ultimate meltdown this week was exacerbated by tears… yup, her own tears compounded her meltdown. She has major sensory issues around getting wet… and her tears during her melt down flew her into a whirlwind of emotions and physical pain. Moments like these break my heart. I try my best to stay composed and support her patiently… but the helpless feelings can even swallow the calmest person.

Speaking of broken hearts…. Its Valentine’s Day weekend.

We typically do not celebrate Valentine’s Day… in fact; I have dubbed it a “Hallmark Day”. You can read HERE how last year I was pleased to get nothing for Valentine’s Day… as my hubby shows me daily in small intimate moments nestled between motherhood & autism how much he loves me.

However, Friday night we had a minor rare spat... when these happen, they usually happen just before bedtime when we are both exhausted from the emotional and physical adventures of the day. Well, that evening was no different… I happened to have a menstrual headache and recovering from a fever, plus I knew I had to be up at 5 AM to go to an important meeting… it was midnight and the kids were still up…

Sahara was running up and down the hall scripting! She then said she was hungry and ran downstairs. Well, because of the fire hazard, she is not allowed in the kitchen by herself… but I didn’t have the strength to get up… I just wanted to melt into my bed. Emily yelled to her father in the other room, “Daaaaad, she’s going downstairs.” He slammed the wall with his palm; it shocked me… which caused me to verbally react, “Did you really just smack the wall? Don’t do that!” I heard him huff only more… we are both exhausted… ready to collapse, but we know we can’t until Sahara is sound asleep…. I snap at him to forget it… he needs to remove himself and I will take care of it… Emily is upset; Sahara is stimming even more… I am fighting tears of anger back… anger at what… not him, not her… but just that our lives aren’t supposed to be like this… I am pissed that I don’t have my white fucking picket fence!! I want to scream… “Where’s my fucking fence!?!?!”

Soon after this, I hear Emily and Dad’s heavy rhythmic breathing... they are asleep. Sahara stays in bed for the rest of the night, but it takes another hour or so to get her settle into sleep. All is still… the alarm is going to go off in 4 hours… and I am laying there listening to the silence of the night… talking with God in the moonlight about this stupid fence in my illogical fantasies.

Later the next morning… my arm hurts… my left arm. I am walking through Walmart… trying to breathe in my nose, out my mouth… chest pains too… breathe in, breath out. I use cognitive thoughts to get me through the store… but inside I am really thinking about my Mom what has vascular disease (she had her leg amputated as a result last spring and had numerous heart attacks over the previous year… but I know it can’t be my heart because soon after her amputation, I went to our family doctor and had a complete exam to rule out diabetes and heart disease… he said I was healthy. His only advice… lose weight. What about the chest pains I get, “Susan, you’ve had them for 5 years.. it is most likely anxiety.” I actually try to tell him I have no stress… have to laugh… did you read the first part of this blog & I try to tell the doctor I have no stress.)

As the day went on, I was sure I was having a heart attack or stroke… but kept saying, ‘well it has been 3 hours, 6 hours, 8 hours, 12 hours… surely if I was having one it would have happened already’. I go take a shower to loosen up my muscles… it works until I step out and see Sahara sitting on the floor surrounded by my raw organic almonds… one in which she is attempting to put up her rectum. Hubby gives her a disgusted look and I call him on it, he looks at me and for the first time ever utters the words… “I HATE AUTISM!!” This is a paramount moment…

Part of me is relieved… I am not the only one. How liberating for him to say it. How healing for us to be in this raw moment together… how therapeutic to acknowledge that it isn’t the child we are frustrated and exhausted from… but autism.

Emily is oblivious to my heavy heart of the day and is planning out a perfect Valentine’s Dance… she has planned out the food, drinks, dancing and presents. It comes together perfectly… Sahara opens her own presents and is excited about them. Hubby dresses up in a suit and tie and sweeps Emily off her feet in a waltz-like dance… the smile of her face… priceless… I am certain it is a moment she will embed in her memory forever… a perfect family moment. A perfect family!!

When I lay down, I realize the pain in my arm all day was from Sahara’s head when she sleeps… I know this because when she laid there again to nuzzle… I felt the muscle screech in pain. I lay there thinking about how silly I was all day thinking I was having a heart attack, when in fact I was having an attack of the heart… My heart yearns for moments of normalcy for my children, for my husband, and selfishly for myself.

I laid there wondering how many other mothers feel like I do… recognizing the inherent beauty in her children and family, and yet raw emotion sneaks in intermittently to get the best of her.

…Today I feel better, more aware of my limitations, my strengths, my hopes and dreams. Today I feel ready to create a new picket fence… but this one isn’t all white and rigid… perhaps it is colored appropriately with all of the colors of the spectrum and full of groves & curves.

… And more importantly, today I feel ready to empower other mothers who may not have the inner-resources I have to pull myself out of the funk so easily.

IQ tests are done... now what? (Homeschool, Resource Room, something more creative??)

A portion of the verdict is in…

The psychologist called late last night (as requested) and said the IQ portions are done.

Our daughter is testing at an early 3^rd grade level, “…and that is being generous. It’s more second grade.” Although I am not surprised, as that was my assessment when we started homeschooling in the fall, I am feeling over whelmed.

(Note: She is 11 years old; in the 5^th grade ~ we started kindergarten at 6 years because we didn’t feel she was ready, so she was already technically a year behind her peers!)

My main question to veteran homeschoolers is this: Do you re-adjust the curriculum to meet the child where she is? I mean, after all, how can she do the 5^th grade stuff if she doesn’t have the 3^rd and 4^th grade skills? I know that seems like an obvious question, but...

if that is what we decide to do… what about those end of the year assessments?

If I am doing 3^rd grade curriculum with my 5^th grader, the 5^th grade assessment is ridiculous to even administer, right? And if she gets the ‘below proficiency ‘ (which by the way is what she got last year while IN PUBLIC school!!) on the 5^th grade exams, will the district and State of Ohio see that as me not doing my job with this kid homeschooling?

The psychologist explained the only way to put her back into the school system is if they got her an IEP for a severe Learning Delay (haven’t got all the formal diagnosis yet). And with this IEP they put her in a ‘Resource Room’.

Okay, so this is my next issue….

I have ‘issues’ (okay I have big issues) with the resource rooms… even for her sibling who has infantile autism!! It is seclusive, has a stigma, and I want her around peer models (which I know she isn’t getting at home either)!! This child’s emotional well-being is fragile, and this would destroy her!! (No, I am not over reacting, in case that popped into your head!!) This is a child who has been mainstreamed for her entire academic career up until now and…

So I know I already answered THAT question… no resource room for her!

That puts us back at homeschooling… AAARRRGGGHHH!! Apparently, I take this more seriously than then the “professionals” who said at the end of the school year that she was within the ‘norm’ (whatever that means!!) and denied any testing. Not only did they deny the MFE, they said even if they saw challenges in let's say math... they don't offer math intervention. Yes, I know they are totally out of line. I have been raising cain since the 2^nd grade and this particular school district has done nothing! I am rightfully upset!! But, my main concern is my daughter right now.... I will deal with the district later.

As a mother what do you do? Your child’s school days and progress mold their future… how do I help this child????

Okay, to be continued after we get the diagnosis in….

2 Year Anniversary: Reflections on Autism

Today is the 2 year anniversary of Sahara’s formal diagnosis of Infantile Autism.

I thought about writing about the huge accomplishments we have seen in the past 24 months… and let there be no mistake they have been huge!! We have left Catatonia in the dust!! Her speech, socialization, cognition, sensory, and every other facet of her being has exploded into this wonderful expression of life!! I am so proud of all of her hard work.

...Yes, we have come a long way, but we have an even farther way to go.

I thought about writing about the blessings I have found in the world of Autism… and let there be no mistake there are huge blessings. I have made friendships and have encountered opportunities that would have otherwise failed to exist. Read my list of blessings HERE.

...Yes, blessings are always there.

I thought about writing about the spiritual side of Autism… and let there be no mistake my daughter is more connected to God than I could ever dream of. However, I have learned to trust God more and that He trusts me even more than that.

...Yes, God is good.

I thought about writing about the fears I have endured over the past year… and let there be no mistake there are fears that I face on a daily basis; elopement, wandering, sexual predators, IEPs, civil rights, bullying, harassment…

...Yes, there are dark corners in my life.

I thought about writing about the struggles her sister has faced… and let there be no mistake that she had to face more in her short lifetime than your typical tween. She has had part of her childhood ripped away by this invisible monster called Autism that consistently puts her on the back burner.

...Yes, siblings have it rough.

I thought about writing about the strain in our marriage… and let there be no mistake there has been strain. The piles of doctor bills that insurance refuses to cover, the reduction to one income, and the never ending discussions about the never ending issues that circle our life.

...Yes, communication is key.

I thought about writing how the diagnosing psychologist was wrong is her prognosis… and let there be no mistake she was wrong! My daughter is talking, socializing and living a fulfilling life. She will go to college, have a career, a family and any other thing she so chooses to do.

...Yes, possibilities are limitless.

And as I thought about all of the things I could write, I realized that the most important thing to say today was that I would like to introduce you my daughter, Sahara Grace.

Sahara is six years old and just started kindergarten. She likes her teacher, follows directions well and declares that she loves school each time she gets off of the yellow bus. Sahara is funny, witty and even sarcastic. She loves animals, bats, watermelon, Curious George and Mr. Bean. She enjoys riding her bike, swimming and playing hide-and-go-seek. She has self determination, a sense of adventure and the patience of a saint.

Sahara’s best friend is her eleven year old sister, Emily. Not only do they share the common bond of sisterhood, they also share the passion for horses, dinosaurs, water activities, chocolate, the outdoors and just about everything else they venture to do; in fact, they are almost inseparable. Daily my daughters inspire me to be a better mother and person!

You can read more about our early journey (HERE) on the Autism Women’s Network.

I would like to conclude by saying that if you are a parent of a child that you think may be on the autism spectrum… you are not alone! Demand that someone listen to you about your concerns so that your child can start getting the services and care she/he needs. Then find a support group so you can get the care you need.

I have found that joining Twitter and Face Book to be one of the best things I could have done for ME. It was through a sense of community and knowledge that I was able to empower myself to stand up to the plate and become my daughter’s best advocate.

Read about the Signs and Symptoms of Autism HERE

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…

Do you Support Females on the Autism Spectrum? I DO!!

Every morning for the past 11 days I have been reminding my online friends to vote for the Pepsi refresh Project. Specifically, I have asked them to support The Autism Women’s Network to win a $50,000 grant to fund AWN’S PROJECT FAIM (Female Autistic Insight Mentoring) which will host workshops across the USA.

Why is that so important to me?

…Simply, because I have a six year old daughter on the autism spectrum. Really I think that is enough of a reason, don’t you?

Before autism was intimately in my life, I had a fairy tale version of what my life would look like in my head. Yeah, I believe there may have even been a white picket fence in that dream. Silly Me!

When I started noticing (as early as 5 months of age) that my daughter wasn’t developing typically I went through the whole range of emotions… denial, anger, blame – you name it, it was there. Eventually after oceans of tears, I was able to move into a place of acceptance and even gratitude.

Autism HAS blessed my life with friends, opportunities and self growth that would have other wised failed to exist. But, that is my life… it is full of optimism. But, then I hesitate and think about my daughter's future… what will that look like? Will she dream of white picket fences?

Hold the breaks Mom… she is only six!!

Yes, I know, but I don’t think any differently about her life than I do about her neuro-typical sister’s. And with her sister in the middle of the tween-age years I am filled with more questions than answers:

Self esteem ~ Boys ~ Hygiene ~ Dating ~ Peer Pressure ~ Accountability ~ Respect for Self and Others ~ Hormones ~ Friends ~ Academics ~ Body Image ~ Sibling Rivalry ~ Drugs & Alcohol ~ Safe Sex ~ Female Empowerment ~ Communication

And as I am faced with these new issues with her sister, I cannot help but to wonder how I will address this with her. These issues are huge, but couple them with the challenges of autism...

Sensory Processing Issues ~ Communication Barriers ~ Environmental and Dietary Sensitivities ~ Discrimination ~ Physical Limitations ~ Emotional Imbalances ~ Vulnerabilities ~ Stemming ~ Pictorial Thinking ~ Facial Cue Integration ~ Socialization Challenges ~ Cognitive Delays

... and it can be overwhelming. How do I educate her? How do I promote safety? How will she develop self esteem and confidence?

Today she seems to have no awareness of most of these things… she lives for the moment, but that doesn’t mean I don’t prepare myself and become proactive in the female issues that she will eventually face.

I can even let my mind wander about her adult future and what that will look like and what challenges she may or may not endure … And I wonder how does being a female autistic impact these issues for her? How will she get the support she needs to be successful in whatever SHE chooses to do with her life? How will she become an empowered woman when she faces obvious challenges? How will she access the resources she needs for life skills?

College ~ Independent Living ~ Career ~ Marriage ~ Family ~ Childbirth ~ Motherhood ~ Abuse ~ Sexuality ~ Relationships ~ Rape ~ Civil Rights ~ Finances

Raising a daughter has its challenges… add autism to it and it becomes even more challenging.

I am perfectly capable of rising to this challenge… but that doesn’t mean I don’t reach out for supports and education. To me that is what the FAIM project is doing. My daughter does have some empowered Autistic Women on her side, advocating for her and it is through their experience that I embrace hope and yes even excitement about her future.

AWN through their FAIM project will visit 5 US cities to provide “effective supports to autistic females of all ages through sense of community, advocacy, and resources.” This is something our community needs… by community I mean the Female Autistic Community. As a mother to a female child on the autism spectrum, I believe that is my community too. And in my corner of the world we respect, support and encourage members of our community. So... having said that, I am asking all of my friends to support AWN with there vision.

Here is a list of things that this grant will provide (taken directly from the Pepsi Refresh Project Page)…

The Autism Women's Network is unique in that it was founded by women on the autism spectrum. Our mission is to provide effective supports to autistic females of all ages through a sense of community, advocacy, and resources.

· AWN's Project FAIM (Female Autistic Insight Mentoring) workshops will be the 1st of its kind.

· We plan to set up 5 Project FAIM Workshops across the USA which will focus on qualities specific to females on the autism spectrum. Topics will include: peer supports, adolescence, adult life, relationships, vulnerabilities and successful communications. Project FAIM Workshops will include active supports and information for everyone (autistics, parents, educators, etc.)

· The participants will meet renowned autistic females whereby gaining valuable insight.

· We will secure the Autism Women's Network non-profit status so we can continue to provide Community Events, online Forum support & E-Mentoring as well as our AWN Radio Show.

I believe that this grant will start a ripple effect that is needed among the female autistic population. So

, I invite you to vote for The Autism Women’s Network to win a $50,000 grant to fund AWN’S PROJECT FAIM (Female Autistic Insight Mentoring) daily until the end of this month, August 31, 2010.