Communication is more than words. It’s feelings, movement, emotion and so much more…

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Photo: My son and I making funny faces for the webcam. When he was little, he would sit at the computer and take hundreds of pictures making different faces and doing things with his hands. He loved to sit with me and do the same!


 

Words have not been forthcoming to me lately. Verbally spoken words, in particular.  I feel stuck in between days, as scattered as the leaves blowing past my window. I feel overwhelmed about writing, because so much is at stake. My words have to make a difference. Collectively, our voices at some point have to be heard.

We (every single Autistic adult I know) want so much to be understood and seen as valuable voices of experience and advice for parents of Autistic children. We don’t want the next generation of Autistic people to grow up as so many of us did (or didn’t) whether we were diagnosed (or misdiagnosed) or not. We want better. We know we deserved better, but there’s no use crying over spilt milk, so we passionately endeavor to reach out to the adults currently parenting Autistic children. But the sad part of this is that most of these parents want nothing to do with us. They say we are not like their children. They insult us with ableist comments. Some make threats. Their words are cruel, and they hurt. They say, “the fact that you are even capable of typing means that you are not at all like my child. My child will never speak, My child will never type. My child will never (insert anything here- they truly believe their child will never do anything)”.

I watched a video today, that one of my Autistic friends had shared on Facebook. It was a video of a young Autistic girl being forced to try to say “Momma” via compliance-based therapy (aka ABA). It horrified me. I read the comments on the youtube video, and it was all about people praising the Mother for her vigilant efforts. But all I saw was a frightened and tormented little girl, who was in pain… upset. Every single thing about her body language, expressions, and verbalizations was saying, “please stop, this is scaring me, it’s hurting my ears, I want it to stop!”. The entire time, Mother and another voice off camera are trying to force her to sound out the beginning of the word “Momma”, loudly and repetitively saying “MMMM MMMM MOMMA MMMM MMMM MMMM” over and over and over again, while essentially teasing the little girl with a piece of candy. They were touching her face, and arms, and forcing her to be in close physical contact when she clearly didn’t want to be touched. As I watched it, I felt like these adults thought she was purposefully not saying it, as at once point, one of them said, “You can’t give in to her”… as if her not saying the verbal sound they wanted was done on purpose. Another part of me became angry. I couldn’t believe a Mother could be so selfish as to put their daughter through this simply for the satisfaction of hearing the word “Momma”. Yet another part of me was irate that a parent would put their child on the internet like this, violating their privacy and exposing their most vulnerable moments. And still another part of me felt broken hearted for this little girl, and for all Autistic children like her, who are being traumatized with compliance therapies.

Not being able to verbally speak doesn’t mean that a child is not communicating. This little girl was completely and effectively communicating her feelings in the video. To me, her communication was so obvious that I felt enveloped by her pain and fear. I simply can’t understand how a parent could not see that- and believe me, that’s truly ironic given that I am Autistic and “we Autistics” are supposedly not able to pick up on cues such as body language and anything that isn’t obvious or literal.

Let me tell you about my Son. He didn’t speak “intelligible” words until he was four. By “intelligible” I am referring to “words that people other than myself could understand”. He made all sorts of sounds, but very few words. Regardless of this, what he was “saying” was always clear to me. I had no trouble understanding and communicating with my Son, but other people apparently did. At the time, I couldn’t understand why people thought there was such an issue with him having supposed delayed speech, or a speech impediment, or his being developmentally behind other children in his preschool class being an issue. I was (at my Mother’s behest) sending him to a Montessori school, and according to their teaching methods, it was all about each child’s individual abilities and allowing them to progress at their own pace. Imagine my shock when they told me that my child was a disruption to the flow of the classroom. That his need for long naps, help with his lunch, or help other things throughout the day were a “disruption” to them. That his needing a comfort item (a blue bunny he always carried) was a “disruption” that was not allowed. I found out that they had been confiscating his bunny each morning after I dropped him off. This of course resulted in his having a complete meltdown every morning, and being then exhausted and understandably cranky for the rest of the day. He would need a longer nap than they allowed, and this was “disruptive”.

You know what? I finally got tired of what people were telling me about my child. I got tired of a school that preached one thing, and then did the exact opposite. I wasn’t going to stand there and listen to people that wanted me to put my child into all sorts of programs for speech when I could understand him perfectly well. One morning after dropping him off, I didn’t go to work. I turned around, parked my car, went into the school and found my Son, sitting in the middle of the classroom floor, sobbing, rocking back and forth, bright red from crying, his little face and clothes soaked with tears. I picked him up, I got his bag, I demanded his comfort item, Mr. Bunny, be given to me immediately. We walked out of that school and never went back.

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The school claimed that since my Son could not communicate what he needed with words, they just let him sit there crying, wailing or screaming… and ignored him until he fell asleep from exhaustion. This all bewildered me, because when I was at home with my Son, I never felt at a loss to understand what he was trying to communicate to me. I always grasped what he needed, whether it was through his body language, facial expression, a particular type of cry, hand gestures, emotive sounds, or a combination of sounds that he made, blended together with words that he did know. All of these things served well to communicate his needs to me. I never felt the need to force him to say exact words. In many cases, he had his own words for things, and I knew what those words meant.

Today, he does speak. Eight years have passed, and all of those people who were up in arms about his delayed speech and speech impediment can bite their tongues, quite frankly. I never forced him to speak as others might have demanded of him. I refused to allow him to be in a preschool situation that in my opinion, was borderline abusive and neglectful (I’m looking at you, Montessori school!). I eventually found another preschool for him, and he didn’t step one foot into it until I had spoken in depth with the owner and the teachers. They were wonderful, willing, and eager to be a safe place for him. And they were. I observed him there, many days… happily moving from activity to activity, with the comfort of his bunny under his arm, able to take naps as long as he needed, getting the help he needed with his food and other tasks. No longer under pressure or traumatized by his environment, he was happy. He started to say more words and interact more. Eventually, he no longer felt that he needed his bunny every day.

I realize that my story is just that- MY story, and my Son’s experience. But I feel that he’s a perfect example of a child who could have ended up being forced to endure the trauma of compliance-based therapy to force him to speak as people’s demanding expectations do to so many others. My Son eventually did begin to speak, but it was entirely on his own terms, his own timetable- nothing to do with what was “expected” at a specific age. I was used to him being “behind”, as he was a preemie, born almost two months early. He didn’t do anything that he was “supposed” to do at the specific age doctors have listed in their ledgers. He didn’t lift his head, roll over, crawl, or walk when he was “supposed” to, but he eventually did. And it never bothered me, or worried me that he wasn’t doing those things when other babies were. I always felt that since he was born so early, that those things didn’t apply to him. There is so much pressure for new babies and young children to meet these developmental milestones and to “be normal” that I feel like it makes it that much more difficult for new mothers to enjoy time with their babies. They’re always watching, waiting, comparing and worrying!

Your Autistic child might not speak using verbal words today, but they are already speaking to you in so many different ways… you just have to open your eyes to all of the possibilities, and remove the onus of expectations and normalcy from your vocabulary. Enjoy your child. Love your child. Allow your child to grow at their own pace, stop demanding, expecting, comparing and stacking them against others. Without that pressure, and without demanding expectations, you never know what is possible. Your child may eventually speak with words. Your child may eventually speak using other assistances. But your child is already communicating with you, and by opening yourself up to alternative modes of communication, you’ll be learning and connecting with them.

On the day of my Son’s graduation from Kindergarten, they had an awards ceremony. I sat in the circle with my boy, watching the teacher read off awards, worried that he’d be upset if he didn’t get one. She read them off: best handwriting, perfect attendance, best artist, best reader, best behavior, best best best best best… and my Son’s name was never called. She called his name last, and his award… I think it was the best award of all, for she recognized in him what so many other teachers at his previous school couldn’t. His award was for “INDOMITABLE SPIRIT”.

Photo: my boy on his first day of Kindergarten, with his little squirrel stuffed animal (comfort item that was agreed he could carry to school), and carrying a new black and red backpack almost as big as him!

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Autistic Blue Ribbon Baking at the County Fair : My Son’s “Maple Bacon Chocolate Chunk Cookies” win First Prize! (recipe in post!)

A few weeks ago, I came across an advertisement for the county fair on Facebook. Thinking my Son might enjoy it, I went to their website to check it out, and there I saw… a baking competition!

If you’re a regular reader of my blog, you probably already know that my Connor loves to bake. He loves to bake so much that instead of video games, he wants a Kitchen Aid Mixer for Christmas. He bakes several times a week and presently dreams of one day owning a bakery food truck. Yesterday while we were hiking, we spent a good long while coming up with possible names and ideas. I asked him if he was interested in entering in the baking competition, and his initial reaction was “No. Scary.” I told him that was what I felt too, but that it would be good experience and that the worst thing that might happen would be… not winning. And not winning is alright. Failure is really only an option if you’re bungee jumping, rock climbing, or trying to reenter the Earth’s atmosphere without burning to a crisp. Worries and nerves gave way to excitement, and we were next trying to decide what to bake!

Connor’s initial wish was to bake “Amaretti with a lemon curd filling”. I would like to at this point state that I have never baked amaretti, or anything with lemon curd. This was entirely his own idea. The assignment for the youth category was to present six cookies for judging. I was worried that heat would affect the lemon curd, and that the recipe might be too sophisticated for the venue. Plus, we don’t own a mixer, which makes properly whipping egg whites impossible, as well as lemon curd. Together we went back to thinking about what to bake, at which point the bacon Gods shone brightly upon us. Bacon. chocolate. cookie. Maple? Browned butter? White chocolate? Maybe. Off to the store we went to pick up the supplies needed. The next morning would be all about testing the recipe, and hopefully baking up a winner.

Without further ado, I’d like to present the first prize winner of this year’s King Arthur Flour Baking Competition, at the Heritage Foothills Fair… his “Maple Bacon Chocolate Chunk Cookies” were a hit, and he won this beautiful blue ribbon and a $50 gift card to spend at the King Arthur website. His cookies were scrumptious. A sweet, savory and salty chocolatey treat. He chose to use cherrywood smoked bacon, and both white and milk chocolate chunks (we bought larger bars of both of these, froze them, and then broke them into chunks with a mallet). The cookies were finished off with a piece of chocolate-dipped bacon, white chocolate crumbles, and sea salt.

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I hope this will be the first of many baking adventures for Connor. He is now more inspired than ever, and I am so happy to see his joy when he bakes. It gives him a great sense of satisfaction and confidence to be able to do all of the measuring, mixing and finishing work all on his own. Last year at this time, he loved to bake, but I was still helping him every step of the way. He’s progressed so far, so fast. He can now bake entirely on his own, without requiring any help at all from me! The lesson? Presume competence at all times in your Autistic children. Connor was probably capable of baking on his own far earlier than I thought he was, but I was so worried about him messing up the recipe or burning his hands, that I continued to help him for longer than I should have

Scroll down for recipe, after pictures! Some more pictures of the process, and the day of the fair!

IMG_6513 Cookies in the oven. He did two test batches, and tried regular drop cookies, as well as a square shaped cookie in the square pan on the left.

IMG_6515 Dipping bacon in melted chocolate to place on top of each cookie. Yum!

IMG_6518 The finished cookies, ready for the judges…

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Maple Bacon Chocolate Chunk Cookies 

By: Connor

Ingredients:

2 sticks softened butter (1 cup)

1 1/4 cups light brown sugar

1 teaspoon vanilla extract

1/4 teaspoon maple extract

1/4 cup real maple syrup

1 egg

3 cups King Arthurs organic all-purpose flour

3/4 teaspoon baking soda

1/4 tea spoon salt

1 cup cooked cherrywood smoked bacon chunks

3/4 cup white chocolate chunks or white chocolate chips

3/4 cup milk chocolate chunks or milk chocolate chips

Cooking Time: 12-14 minutes

Start by beating the two sticks of butter,  brown sugar, vanilla and maple extracts, maple syrup, and one egg. Add the baking soda and salt and mix it together. Add the cups of flour one cup at a time. Prepare the chocolate bars by freezing them in a bag then beat it with a mallet. Thoroughly mix the bacon chunks and chocolate chunks, then wrap the dough ball in plastic wrap and put it in the refrigerator for one hour. Use an ice cream scooper to make the same sized cookies, put them in the oven and bake them for about 16-18 minutes. Finish by adding a piece of bacon half dipped in melted milk chocolate then dust with sea salt and put a chunk of white chocolate on top and sprinkle some white chocolate dust to.

#IStandWithKassiane

Sonnolenta:

I experienced the latter day of TPGA’s failure to moderate parents, while deleting, banning and silencing Autistic voices. I was especially aghast at the banning of Autistic Advocate Kassiane (Radical Neurodivergence Speaking). Until such a time comes that TPGA issues an apology to the many Autistic adults they silenced, as well as the Autistic community as a whole, I am removing TPGA from my blogroll, have unlikes their page on Facebook, and will no longer be sharing their material. They’ve shown me and countless others that they are not allies.

Originally posted on ischemgeek:

Okay, so, it’s with a heavy heart that I announce that no longer will I recommend the Thinking Person’s Guide to Autism book or community as if they’re on my mental list of good parent resources. They’ve been demoted to “less bad.”

Why?

Because of their continued, and worsening, treatment of autistic adults on their community facebook page, which came to a head last night and the night before. For a long while now, autistic people have been held to a higher and higher standard than non-autistic parents in the comment threads of TGPA. It had gotten to the point that some autistic users complained of a seeming “parent’s code” that appeared to prevent real criticism by parents of other users who were parents.

This phenomenon was apparently out in spades Sunday night (I was not there and so cannot speak to it myself) and was definitely apparent last night…

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Please consider supporting Autistic people via organizations other than Autism Speaks : An open letter to Iron Chef America’s Michael Symon, Mario Batali and Masaharu Morimoto

Dear Iron Chefs Symon, Batali and Morimoto,

I would like to ask you to consider expanding your charity work in support of Autistic people to include organizations other than Autism Speaks. I’m writing this as an Autistic adult, and Mother of an Autistic twelve year old boy, who has big dreams of one day becoming a chef. My Son Connor is homeschooled, and upon completing his work each day, checks in to see how many episodes of Iron Chef America, Chopped, Cutthroat Kitchen, and other favorites have recorded. In short, he looks up to all of you. He’s been very inspired by all of you. He talks about one day meeting an Iron Chef, or being able to enjoy one of your dishes. Your words mean something to him. He cooks or bakes several times a week, dreams of one day going to culinary school, and wants a Kitchen Aid mixer for Christmas this year. My boy is serious, and I support him 100% in following his dreams, despite his challenges.

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Yesterday, we were watching the Iron Chef Chopped Championship together, when Connor paused the recording, and called me over to listen. “Mom, Iron Chef Michael Symon is going to give $50,000 to Autism Speaks if he wins! Doesn’t he know about how many ways they are not a good place to give your money?” I replied, “I don’t know. I’ll do some research to find out more”. I did find out more, (Here, especially – the Cleveland Autism Speaks Chef’s Gala featuring Iron Chefs Michael Symon and Mario Batali, hosted by Wolfgang Puck and featuring 20 prominent Cleveland Chefs**) and that’s why I’m writing this letter and begging you to listen to me, an Autistic adult, as well as the voices of numerous other Autistic people and Autism Advocacy Organizations who have taken a powerful stance against Autism Speaks.

I understand that you may chose to donate to Autism Speaks for personal reasons, such as Chef Symon having a friend with two Autistic children. However, I would like you to consider that there are better organizations out there to support. I hope that in reading this letter, you’ll allow me to inform you about why that is. I am one of the Autistic people whom you claim to wish to support, so I feel that it’s important that you listen to what I have to say, as well as consider how my Son felt when I told him that three of his favorite Iron Chefs support an organization that has no Autistic representation, and puts the majority of their monies into research initiatives that involve both eugenics and drastic and controversial therapies. 

Through my research I discovered that your colleague, Chef Simon Majumdar has supported the National Autistic Society through his work. Majumdar also recently shared the following tweet:  · Sep 22 We have so, I think we should also have my first shout outs go and both great causes  AND, he retweeted the following tweet, in a show of support:  · Sep 22  Thank you for supporting Autistic people. and can use your support !!  Many of us in the Autism community took notice of this and thanked Majumdar and retweeted his supportive words. Unfortunately, my attempts to let Chefs Symon, Batali and Morimoto about myself and my Son’s disappointment in their support of Autism Speaks went mostly unheard. Chefs Morimoto and Symon ignored my tweet, and Chef Batali wrote the following, then ignored my polite replies:

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As celebrity chefs, you all have great influence and a far reach. Please consider using your star power, talent and influence to positive use by considering some of the many amazing alternatives to Autism Speaks.

I’d like to begin by sharing with you some key points from a letter published on January 6, 2014 by the Autism Self Advocacy Network. This letter contains some of the most compelling reasons that anyone who wants to support Autistic people shouldn’t choose to give Autism Speaks that support. The letter, entitled “2014 Joint Letter to the Sponsors of Autism Speaks” (found in full HERE) was jointly drafted by 26 established Autism Advocacy Organizations.

Autism Speaks has no Autistic representation within their organization:

Autism Speaks’ senior leadership fails to include a single autistic person. Unlike non-profits focused on intellectual disability, Down Syndrome, Cerebral Palsy and countless other disabilities, Autism Speaks systematically excludes autistic adults from its board of directorsleadership team and other positions of senior leadership. This exclusion has been the subject of numerous discussions with and eventually protests against Autism Speaks, yet the organization persists in its refusal to allow those it purports to serve into positions of meaningful authority within its ranks. The slogan of the disability rights movement has long been, “Nothing About Us, Without Us.” Almost nine years after its founding, Autism Speaks continues to refuse to abide by this basic tenet of the mainstream disability community.”(source)

Autism Speaks has a history of supporting dangerous fringe movements that threaten the lives and safety of both the autism community and the general public.

“The anti-vaccine sentiments of Autism Speaks’ founders have been well documented in the mainstream media. Several of Autism Speaks’ senior leaders have resigned or been fired after founders Bob and Suzanne Wright overruled Autism Speaks’ scientific leadership in order to advance the discredited idea that autism is the result of vaccinations. Furthermore, Autism Speaks has promoted the Judge Rotenberg Center, a Massachusetts facility underDepartment of Justice and FDA investigation for the use of painful electric shock against its students. The Judge Rotenberg Center’s methods have been deemed torture by the United Nations Special Rapporteur on Torture (p. 84) and are currently the subject of efforts by the Massachusetts state government and disability rights advocates to shut the facility down. Despite this, Autism Speaks has allowed the Judge Rotenberg Center to recruit new admissions from families seeking resources at their fundraising walks.”(source)

Autism Speaks’ fundraising efforts pull money away from local communities, returning very little funds for the critical investments in services and supports needed by autistic people and our families. 

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Only 3% of funds donated to Autism Speaks are reinvested in services and supports for autistic people and our families. Across the country, local communities have complained that at a time when state budget cutbacks are making investment in local disability services all the more critical, Autism Speaks fundraisers take money away from needed services in their community.  In addition, while the majority of Autism Speaks’ funding goes towards research dollars, few of those dollars have gone to the areas of most concern to autistic people and our families–services and supports, particularly for autistics reaching adulthood and aging out of the school system. According to the Department of Health and Human Services’ Inter-Agency Autism Coordinating Committee, only 1% of Autism Speaks’ research budget goes towards research on service quality and less than one-quarter of 1% goes towards research on the needs of autistic adults.” (source)

Autism Speaks’ advertising depends on offensive and outdated rhetoric of fear and pity, presenting the lives of autistic people as tragic burdens on our families and society.

“In its advertising, Autism Speaks has compared being autistic to being kidnappeddying of a natural disasterhaving a fatal disease, and countless other inappropriate analogies. In one of its most prominent fundraising videos,  an Autism Speaks executive stated that she had considered placing her child in the car and driving off the George Washington Bridge, going on to say that she did not do so only because she had a normal child as well. Autism Speaks advertisements have cited inaccurate statistics on elevated divorce rates for parents of autistic children and many other falsehoods designed to present the lives of autistic children and adults as little more than tragedies.” (source)

 

Sponsors of Autism Speaks are beginning to listen to the voices of Autistic adults, such as myself- by severing their sponsorships and arrangements with Autism Speaks. Most recently, both Build-a-Bear Workshop and Panera Bread dissolved their sponsorships. Why did they do it? Because they listened to Autistic voices and realized that what we were saying was valid. They respected the fact that when Autistic people are speaking in outrage about an organization supposedly positioned to help them- that something must be very wrong with that organization. They understand that the anti-vaccine stance found in many of Autism Speaks “treatments” is both dangerous and cavalier. Autism Speaks has been criticized for years due to it’s use of dehumanizing rhetoric about Autistic people, its pithy spending on direct services for Autistic people, its exorbitant executive salaries (Its rates of executive pay are the highest in the autism world: some salaries exceed $400,000 a year.),  and its refusal to include Autistic people in meaningful leadership positions within the organization. (source: Boycott Autism Speaks)

You might argue and tell me and others like me, “BUT, AUTISM SPEAKS DONATES 34% TO RESEARCH INITIATIVES!” Let me tell you something… research does nothing to provide immediate help and assistance to Autistic people in the present moment. Only 4% of the money Autism Speaks raises goes directly to Autistic families and supports! Autism Speaks can fund all of the research in the universe, but that doesn’t support real-life families in real-life situations, in need of real-life supports. Autism Speaks donates only one quarter of one percent of their monies to provide support to Autistic adults. What happens when Autistic children grow up and become adults? What services does Autism Speaks provide to transition them, support them and provide accommodations for them? A fraction of a minuscule percent of next to nothing, that’s what. And furthermore, Autism Speaks essentially believes that Autistic adults such as myself don’t exist. That after a certain chronological age is reached, we all go “poof” at midnight, or turn into pumpkins. We do exist, and we’re the experts on Autistic experience, NOT a group of grossly overpaid Autism Speaks executives pocketing $400,000 a year salary each out of the donations of the brainwashed masses.

Autistic adults are speaking out in droves against the actions of Autism Speaks. We want to be heard! We deserve representation by those who claim to want to support us. Here are some of the wise words of my adult Autistic friend Amy Sequenzia, a non-speaking autistic self-advocate, poet and writer, whose writing and poems are regularly featured on Autism Women’s Network and  Ollibean.

“If organizations like Autism Speaks were really thinking about us, they would stop spreading fear of autism and they would start talking to us, the only true experts on autism. They would then help us achieve the goal to cure what really needs to be cured: the false assumptions of what life as an autistic person is, what life with an autistic person is.” -Amy Sequenzia (source)

I tell you with earnest that should you choose to discontinue supporting Autism Speaks, you’ll be showing that you truly care about Autistic people of all ages, colors, voices and disabilities- not just those whom Autism Speaks deems appropriate. Autism has been primarily positioned as a “disease” affected white, upper/middle class boys. This is erroneous, as Autism can be found in people as varied as the Autism Spectrum itself. Autistic adults and women also represent a hugely forgotten demographic of Autistic people in dire need to supports and assistance.. As an Autistic mother of an Autistic child, you will certainly have my greatest respect, and you’ll also make one of your Autistic fans overjoyed.

 

Sincerely,

Cristiana Calderan and Connor

 

Please consider future charity work benefitting Autistic people to include organizations such as:

 

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Autistic Self-Advocacy Network (ASAN) provides support, community, and public policy advocacy, by and for people on the autism spectrum.

 


 

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Autism Women’s Network provides effective supports to Autistic women and girls of all ages through a sense of community, advocacy and resources.

 

 


20 prominent Cleveland area chefs who participated in the Cleveland Autism Speaks Chef’s Gala with Iron Chefs Michael Symon and Mario Batali:

- Tim Bando – Grove Hill (Chagrin Falls) 
– Jonathan Bennett – Moxie (Beachwood) and Red (Cleveland, Beachwood) 
– Derek Clayton – Michael Symon Restaurants (Cleveland)
– Britt-Marie Horrocks  Culey – Coquette Patisserie (Cleveland) 
– Brian Doyle – Sow Food & Beachland Ballroom (Cleveland) 
– Brandt Evans – Pura Vida (Cleveland) and Blue Canyon (Twinsburg) 
– Anna Harouvis – Anna in the Raw (Cleveland) 
– Chris Hodgson – Hodges, Cibreo, Driftwood Catering, Bin 216 (Cleveland) 
– Jeff Jarrett – AMP 150 (Cleveland) 
– Douglas Katz – Fire Food & Drink, Provenance (Cleveland) and Katz Club Diner (Cleveland Heights) 

-Tim Monsman – Giant Eagle Market District stores (various locations) 

- Matt Mytro – Flour (Moreland Hills) 
– Fabio Salerno – Lago and Gusto (Cleveland) 
– Jonathon Sawyer – Greenhouse Tavern, NoodleCat and Trentina (Cleveland) 
– John Selick – University Hospitals Ahuja Medical Center (Beachwood)
– Karen Small – Flying Fig (Cleveland) 
– Dion Tsevdos – Cheese Shop, Urban Herbs, & Classic Seafood at West Side Market (Cleveland)
– Jill Vedaa – Rockefellers (Cleveland Heights) 
– Rocco Whalen – Farenheit, Rosie & Rocco’s, Rocco’s Tacos (Cleveland) 
– Eric Williams – Momocho (Cleveland) and El Carcinero (Lakewood).  

 

The Wilderness is our Classroom : Chattooga River Trail/Ellicott Rock Wilderness

Our second year of homeschooling is in full swing, with this year’s Science class focusing entirely on Geology. What I love about this is that the hiking excursions we so often enjoy can now be expanded into even greater learning opportunities. Our hot and steamy weather is starting to wane, which means one thing in our family other than “everything pumpkin” – that’s right, HIKING SEASON IS BACK!

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We hiked this portion of the Chattooga River Trail in the summer, on a particularly cool day. I tripped on an outcropping of rock and injured my knee, which fortunately was not the chipped patella I thought I had, but rather, a much less serious case of “inflamed bursa”. I still can’t kneel down on that knee, but not having to have surgery? I’ll take it!

This particular area is one of our most recent and favorite areas in which to hike. It’s extremely secluded, untouched, and spectacular. It alarms me to admit that I lived in Upstate South Carolina for over two years before discovering the Chattooga River, which forms the border between SC and GA. A portion of it is classified as a “wild and scenic river”, which means that there is no development, dams, hydroelectricity, or any such tampering of it’s natural flow. “Few rivers live up to their reputation. The difficult, 19-mile Chattooga National Wild and Scenic River in South Carolina’s northwest corner does. Steeped in history and Hollywood, this gush of whitewater churns along the border of South Carolina and Georgia for 40 miles. Most river aficionados know it best as the backdrop for James Dickey’s classic novel, “Deliverance,” and the subsequent 1972 movie starring Burt Reynolds.” It also happens to be an awesome area to observe numerous geologic formations, and more types of rocks than I can currently wrap my head around.

The only people you’re likely to see on a hike here might be some trout fisherman at the Burrell’s Ford Road bridge, or some campers not far off that same road. I’ve actually never been camping in my life. It’s not something my family did. It’s something I wanted to do, even trying to sleep out in the backyard, or on the back porch when I was a little girl. But mysteriously, I always awoke tucked back into my bed the next morning… I really, really want to start camping, but I need to get camping equipment. And right now, I’m saving money full tilt for a downpayment on a house.

If you are a regular reader of my blog, you probably already know that maintaining a close proximity to nature and spending as much time as possible out in the forest is a big part of my overall therapeutic plan. I spent decades of my life forcing myself to live in populated urban areas, or loud and hectic suburban neighborhoods. From 2002-2012, I lived where my parents had retired- a place called “Hilton Head Island”, which I detested with every fiber of my being. Hilton Head is completely manicured, fabricated, false, fake, snobbish, you name it- I have a choice negative adjective to describe it. It was my special kind of Hell. Moving to Upstate South Carolina was a clean break, and being close to the mountains, lakes and streams has been a panacea for my soul, not to mention a return to those things that are most important in life.

We collected a lot of rock samples on the hike, that we’ll identify in later lessons this month. I can’t help but take photos of the many wildflowers that bloom here- these are probably the very last of the year!

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Euonymus americanus, commonly known as “Hearts-a-bustin'”, grows prolifically in Southern Appalachian forests. It’s a really beautiful sight at this time of year!

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Spoon Auger Falls, which I’ve been calling “Spoongauer” Falls for the longest time… a short hike off the main trail, but very steep and with a lot of switchbacks!

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Spoon Auger Falls

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Spoon Auger Falls

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I realize that the river probably looks tiny in these shots- I enjoy using a camera mode called “miniature”. This shot was taken on the trail when it is about 50 feet above the water level.


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Swimming in a calm section of the river, just off one of our favorite spots- a white, sparkly sand beach we named “Luna’s Beach”, after our dog Luna. This is a gorgeous place to take a break, eat lunch, and swim!

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Wading at Luna’s Beach. There’s a good 20-30 feet of beautiful white sand beach here. Furthermore, the entire beach is filled with shimmering particles of eroded Mica, which makes it completely magical!

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Distant shot of boy and dog at Luna’s Beach.

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Down river. The views are so much prettier than any camera could ever capture!


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This is Orange Jewelweed (Spotted Touch-Me-Not) – Impatiens capensis- I love the little curl at the base of the flower!

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Boy and dog maneuvered out onto this rock cropping, with me watching nervously. The river isn’t deep or fast here, but there’s lots of rocks. And I’m so scared of falling again, after our last trip here!

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Victory!

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Stella won’t let her human go anywhere alone. She’s always one step behind.

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The perfectly clear, crisp waters of the Chattooga.

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I believe this beautiful little purple flower might be Blue Lobelia, Lobelia siphilitica.

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Stella, enjoying the waterfall!

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Closeup of striated rock formations at the Spoon Auger Falls.

fotoSome rocks I picked up at Luna’s Beach. These are all embedded with sheets of Mica, which is a super shiny, soft mineral from which cosmetics are made! Seeing that I formulate cosmetics as my job, I always love finding these stones!

 

Killing you never crossed my mind.

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Dear Son,

I’m writing this to you because you’ve asked me questions about Issy Stapleton, an Autistic girl whose Mother tried to kill her. You’ve no doubt read about other parents of Autistic children who have killed their children. I’m sure it’s confusing when you read that people feel sorry for these parents, who felt murdering their child was an acceptable way to deal with their problems. I’m sure this makes you wonder if at some point in time I wanted to kill you.

My answer to this question is: NEVER.

From the very first moment I discovered I was pregnant with you, I wanted you. You were a little miracle, you see… because for the first two months of my pregnancy, I was told that my hormone levels weren’t rising, or that it was a false pregnancy, or that I should go home a lie down, and take it easy- because I surely would be miscarrying you. You outsmarted them all, little one. Finally, at an ultrasound appointment, you let them know you had no intention of going anywhere- with a tiny little heart beating.  I cannot put into words the joy that this brought me. I loved you more than anything I had ever loved before, and I had never met you. You were my sunshine from the moment I heard your heartbeat.

At this point, I started getting lectured about genetic testing. As a thirty year old mother, I was told my pregnancy was “high risk” and that the chances of you having a birth defect were higher. I was told that maybe my pregnancy wasn’t progressing normally because you potentially had one of these defects. While some they could ascertain visually from viewing the ultrasound, others required genetic testing. They would need to stick a big needle into my belly and withdraw amniotic fluid from within the cozy little bubble which you inhabited. There was risk with this testing, but they urged me to do it. So that I would know if you were “alright”. I refused the testing. I didn’t want to do anything to put your life at risk. I knew there was a chance you could be born with one of the many genetic defects listed in the pamphlet they gave me, but I didn’t care. I wanted you just as you were. I would love you no matter what.

As my pregnancy bore on, it became clear that it was going to be a difficult one. I had many false alarms, which then turned into real alarms. I went into premature labor, starting at twenty weeks, several times. You and I spent a lot of time at the hospital, late at night. If you had been born that early, you would most likely never have survived. I was given shots and medicines, and told I had to go on “bed rest”. I spent most of the next sixteen weeks laying down, only getting up when I absolutely had to.  It was hellish, but questioning my decision to have you never crossed my mind.

You were determined, and so was I. Through all of the pregnancy aches, pains, sleepless nights, weight gain, headaches, and confusion about the future- questioning my decision to have you never crossed my mind. When I was admitted to the hospital on May 11, 2002 (my 33rd week of pregnancy), in active labor, I knew you would soon be here. They tried everything to delay your arrival, but it didn’t work. I was told you weighed only three pounds and had a 40% chance of survival. I had social workers come into my room before you were born, to give me grief counseling. They even sent a priest. They wanted me to understand that you might not survive. You showed them.

You arrived at 11:37 AM on May 13, 2002. The day after Mother’s Day. It was a dark, rainy morning and you shouldn’t have arrived until the very end of June. Despite being so early, you unleashed a furious cry within your first few seconds, and I finally got to meet you. My first thought was that you looked like Yoda. I can’t lie, because you were a greenish color, covered in white stuff, with a wrinkly little face. To be honest, I only held you for a few seconds, because they whisked you away to the neonatologists that were waiting to assess you.  I fell into a deep sleep, aided by pain medication.

When I awoke, I didn’t know where I was, but I knew that I felt very empty. You were no longer in my belly, and the empty, sad feeling of you no longer moving, kicking and hiccuping stayed with me for weeks after you were born. I probably would not have felt this way if I could have had you with me, but I couldn’t. You were in the NICU for those weeks. I went to feed you several times a day, and I was only allowed to have you out of your isolette for ten minutes at a time. You had severe jaundice, torticollis, and no suckling reflex. I was not able to breast feed you, and bottle feeding you was often an insurmountable task. The nurses would give me the tiniest little bottle, filled with 5 ml of formula, with which to feed you. You were so tiny, and had several IV’s going into your feet, and a big one on your forehead. You still to this day have a squiggly little vein in your forehead from where that IV was. It would take forever to feed you even a tiny amount, and then you would spit it all back up.

When you came home from the NICU, I barely slept. I was a single Mother, so I didn’t have anyone to help me out. My parents lived several hours away. Your sleeping was erratic, you took over an hour to drink a tiny bottle, and then you’d sleep for fifteen minutes and wake again wailing, only to start the whole cycle. During the day, the slightest little noise awoke you and you’d cry insatiably. I was desperate for sleep, desperate for help, and desperate in general. I didn’t realize at the time, but I was suffering from post partum depression. There were days when I truly thought I was losing it. But you know what? The thought of killing you never crossed my mind. Being a parent is difficult, but that’s what we sign up for when we decide to become parents. I had no help or support and was caring for a newborn infant and running a business at the same time- it felt impossible and hopeless very often, but I loved you, and I was determined to make it through. No matter what. Killing my baby or myself because I was depressed and times were tough was not an option.

I’ve loved you since I first found out you existed, and I will always love you. No matter what. Though the world might call you many names, and Doctors over the years have written many scribbles in their ledgers, you are and always will be my Son. And I will always love you no matter what labels are given to you. No matter how difficult times got, I want you to know that I never thought that killing you was a solution to the difficulty I was dealing with. Murder is wrong, no matter what the circumstances. I don’t want you to ever be concerned that receiving an Autism diagnosis will change things, because it won’t. I will still love you. You and I don’t have much family, or assistance, or supports, but that’s okay. We’ve made it this far without it, and we will continue to thrive. I don’t want you to worry about those things. I don’t want you to worry that things will change. There’s one thing that has never changed for your entire life, and that is how much I love you.

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Getting to know me…

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Yesterday marked my return to blogging after a summer’s hiatus. I was going to post this yesterday, after reading this post on the blog of my friend Alex. I loved reading her post and learning more about her. I honestly don’t know if anyone cares much to know more about me, but for me, this is a good exercise in getting back into writing mode. I know this list will be difficult for me to write.

The idea is to present 20 random facts about yourself, so that people might get to know you better. 

Here I go!

1. My favorite book is “The Mists of Avalon” by Marion Zimmer Bradley, and I’ve read it about 20 times. I just recently listened to it on audiobook. I love her fresh perspective on Arthurian legend.

2. I cry about ten times a day, sometimes more. I’m extremely sensitive to emotional stimuli. Sometimes a TV commercial makes me cry, sometimes a baby animal. Sometimes it’s something I’ve read. Sometimes I cry while watching Star Trek. I always cry while watching Doctor Who. Tears do not equate with depression.

3. I was born with severely clubbed feet and had to wear braces and casts. The cast on my right leg grew into my calf, and I almost lost my leg. I have a long scar up my right leg. My feet are straight now, but this part of me was a constant reminder when I took ballet class and my teacher would complain about my awful feet. One day, I told him this, and he never kvetched at me about my feet again. I am grateful to have been able to have this problem taken care of when I was a baby. If I was born 100 years ago, I would most certainly not have been able to walk.

4. I absolutely detest American football, and can’t figure out why this upsets people so much.

5. Despite being a very quiet, introverted person, I enjoy adventurous things. In the past year, I’ve gone whitewater rafting twice, and zip lining at the Arenal volcano in Costa Rica. I also love roller coasters!

6. I have one tattoo, which I got in 1993. It is black ink only, and is a band of roses and thorns from an Aubrey Beardsley illustration.

7. When I was briefly married, my husband volunteered to work on John Edward’s campaign. He refused to do the phone call portion of it, and made me do it. This was one of the most frightening things I’ve done in my life, to be honest. I had to make hundreds of phone calls to people I did not know, and ask them political things. I was horrible at it, as most Autistic people probably would be. I cried myself to sleep every night for the month I had to make those calls.

8. I had an opportunity to move to Italy for nine months out of each year, several years ago. I almost set it into motion, but I realized that being introverted, quiet, and Autistic didn’t lend itself well to Italian culture in general, when my Italian friends told me that most people found me to be “strange” and “depressed”, including them.

9. If I wasn’t a Mother, I would most definitely have applied for the Mars One mission.

10. My favorite food is pizza, which is rather sad, because I have tested positive for food sensitivities to both gluten and dairy- and eating pizza makes me feel terrible.

11. Although I’ve made a lot of progress in terms of self acceptance, overall, I still feel unliked and misunderstood by most. I’m not sure how to ever shake this.

12. I’m proudly Pagan, which means that I have eschewed my early life’s religious indoctrination in the Baptist church. I consider myself to be a spiritual person, but not religious. I am a solitary. I try to be as in tune with nature as I can be.

13. I’m a single woman and a single mother by choice, and by a promise I made to my Son. When my very abusive marriage was coming to a close in 2010, I found out that my husband had been abusing my Son. This left him with much to work through, and a general fear of the same thing happening again. I made my Son a promise back in 2010 that it would never happen again, and I will keep that promise. I’ve also learned that trying to be in a relationship was a top source of much of my life’s turbulence. I feel it is very sad that our society measures people’s worth by whether or not they are in a relationship. I’ve never been happier, while not being in one. I don’t miss it at all.

14. I wrote a book back in 2002 and it was published. Every 6 months I get a royalty check, and that check is always a nice surprise to receive. I was recently able to start paying myself a paycheck every two weeks, so I hope to save my royalty checks towards a downpayment on a little house! My book is “Holistic Aromatherapy for Animals” and you can find it an Amazon, B&N and most major book sellers.

15. My favorite music is, and always will be classical music. I play the violin, and not as well, the piano.

16. Every time I go outside at night and look up into the sky, I am struck with wonder and stand there, still as a statue for at least 5 minutes.

17. I have a birthmark on my stomach which exactly matches the star pattern of the Pleiades star cluster. I first noticed this when I was a little girl.

18. While I hate being uncomfortable, I wish I could dress every day like I lived at a Renaissance Fair. This would probably only last 15 minutes after putting on such a dress.

19. I plan to own a flock of Silkie chickens in the very near future.

20. I am very passionate about many things in the political arena, but I seldom discuss or share things like this on my Facebook page because when I do, I get the definite idea that I am pissing people off. And that makes me insanely uncomfortable.

21. This was very difficult list for me to write.