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!!

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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.

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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

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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!! ♥

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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.

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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!))

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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).

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