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Posts Tagged ‘ASD’

Apparently, you can find anything and everything on Pinterest.

Apparently, you can find anything and everything on Pinterest…including things you thought were your own unique ideas, handily made into memes.

For years, I’ve considered myself an atheist. Jew-“ish” so to speak. A cultural Jew with no real desire to practice the faith in which I was raised because, quite honestly, I felt Will’s autism was proof enough for me that there is no God. People would tell me that God doesn’t choose who gets autism or cancer or diabetes; He simply helps and guides us along the way as we handle these challenges. Yet in the next breath, they would tell me that God has a plan for Will; a “special plan for these special children.” People would tell me that, “God chooses special parents for special kids,” and that, “God chose you to be Will’s mom because He knew you could handle it.” None of that jived with God not choosing who gets what in life. And so, I saw all of that — 100%, absolutely, positively all of that — as completely false. I took them as the social niceties that people say when there really is nothing one can say. It’s an untenable situation. What else could a person politely say? The sentiment and empathy I appreciated, truly. I knew many people who shared these thoughts with me meant them from the depths of their hearts, and I was grateful. But from a practical standpoint, I just didn’t buy it.

I went along for quite a while that way, my atheistic Jew-“ish” self, living without God but with morals, and doing just fine. And then one night, I got into a conversation with my friend, Nathan, whose spiritual journey is one that fascinates me more each time we discuss it. And Nathan made some very good points about what a terrible atheist I was, seeing as I still believed, having experienced it myself, that there is more to this world than simply that which we can normally see and feel and hear. He suggested that perhaps I was not so much an atheist but someone who didn’t believe in the Judeo-Christian “version” of God.

It was such a simple concept. What if the energy of the universe, the force of life itself, what if THAT is God? Because even for someone like me who believes in evolution and the Big Bang Theory (Bazinga!), even from a scientific standpoint, I agree that there has to be more. If we all evolved from the initial Big Bang, what precipitated that event? From what did that first bit of space dust emerge? That is, if we know it is true that we can neither create nor destroy matter, then where did the first matter come from? What started everything that led up to the Big Bang? Nathan really had me thinking.

Even with those conversations, though, I still considered myself Jew-“ish.” I didn’t worship or go to temple. I didn’t pray. I didn’t see a point.

And then Julia started asking to go to church. I attributed this to the fact that my boyfriend, Rob, has three kids, and they love their church and go regularly. So Julia had heard a lot from them about how fun church is, and I’m pretty sure she imagined it to be some kind of indoor park where kids go to do fun stuff and grownups aren’t allowed. We hadn’t been to synagogue in Kansas City yet, and as much as I am open to my children adopting the faith and belief systems that work for them and bring peace to their souls, I wasn’t quite ready to take Julia to church when we hadn’t even gone to temple. It seemed … wrong.

Time passed, and suddenly, it was Spring, and we had been in Kansas City nearly a year. Rob’s parents invited us to join them at church for Easter services, which I had never attended before, and just like that, Julia and I went to church.

Julia later told me that Easter was, "The worst day of my whole entire life." Apparently, church was not the kid-topia she'd expected!

Julia later told me that Easter was, “The worst day of my whole entire life.” Apparently, church was not the kid-topia she’d expected!

I anticipated spending a couple of hours sitting politely, perhaps staying busy keeping Julia quietly occupied. I thought it would be interesting to see what Easter services entailed, but more from an anthropological standpoint than anything else. I have rarely been so pleased to be wrong.

From the very beginning, I felt a sense of warmth and welcome at the United Methodist Church of The Resurrection. Simply walking into the building as people flowed in, smiling and welcoming one another, was uplifting and peaceful. The orchestra and choir music felt oddly familiar and comforting, despite the fact that I had never heard most of the songs before. But there was more.

The pastor began to speak, and I was completely focused on his words. There had been shootings in the area that made national news the previous week when a man killed innocent people at a Jewish retirement home and then on the steps of the local Jewish Community Center. The pastor had met with the Center’s Rabbi, a longtime friend, to discuss how they could support the community through the tragedy. They were both particularly invested, as the shootings took place on the Rabbi’s turf, so to speak, yet the man and his grandson killed at the JCC were not Jewish. In fact, they were members of the United Methodist Church of the Resurrection.

It was no surprise, then, when the pastor explained that he had altered his planned Easter sermon, taking into account the fact that he had presided over the funerals of two members just two days prior. His sermon, however, was still seamless. He flowed from his discussion of the week’s events into the importance of unity, acceptance, community, and compassion. He talked about civil rights and the blights of bigotry, hate, and prejudice. He spoke of the need to meet such evil with love so that every act of violence or discrimination creates an unintentionally positive ripple effect of love, tolerance, and peace.

This, I felt, was what God is about, whatever form God may take. Even if God is only the collective concept of good, existing like Santa Claus as a motivating force that inspires people to be better, kinder, more loving and accepting, then so be it. Perhaps, I thought, the idea of God is enough.

Of course, the pastor was nowhere near done. He segued into what was likely the bulk of his planned sermon, making the eloquent connections of a seasoned public speaker, discussing Jesus and his works. In particular, he focused on the women in Jesus’s life and how they supported his ministry both logistically and financially. He spoke of Mary Magdalene and how she was an unmarried woman, living alone, which, at the time, would have meant she was both without any male relatives to take her in and without any man willing to, “take her to wife.” Based on other accounts of her life, the pastor posited that Mary likely suffered from a psychological, behavioral, or personality disorder, and that contributed to her unmarried state. The result was that Mary was wretched in society’s view. She was of the lowest status, an unmarried, unmarriageable, unstable woman, living alone. And yet, when Christ was resurrected, the pastor continued, Mary was the first person to whom he reportedly revealed himself.

This led to a discussion of Jesus and how he valued and surrounded himself with those whom society would often dismiss or undervalue. This, for me, was of particular interest. What would society have done with Will at the time? How does society view and value him now? In the pastor’s words, I heard loud and clear that Jesus would see the value — the inherent, individual good — in my son.

Of course, this was all well and good. It didn’t suddenly make me a Christian or a person of religion at all. It was inspiring and thought-provoking, but a single sermon was not going to shift my world view.

And then the pastor spoke about the very issue that had, for so long, been the crux of my psedudo-atheism: when bad things happen to good people and how that jives (or doesn’t) with God’s plan. I really could not get over how many of my personal challenges with religion were being addressed in this single sermon.

The pastor circled back to the week’s events, talking about how these horrendous, unthinkable things had happened in our community. People had been killed. People were mourning. People were searching for answers, and one of the questions was, inevitably, “Why?” Why would  God allow this to happen? How could this be part of God’s plan? I expected the pastor to say that it’s not for us to know, or that God works in mysterious ways, or that all would be revealed in the next life — essentially, nothing helpful, because these were the answers I had always gotten about Will’s autism. And again, I was wrong.

The pastor said, essentially, that this was not God. Did any of us think, truly, that God wanted a young man and his grandfather to be murdered? Did any of us think that God wanted someone’s heart to be so hardened and twisted and filled with hate that he would go out and commit such a crime? No, he said, this was not God. This was man. This was a result of man exercising free will, and, he said, it grieves God to see it.

And therein lies something I have also long believed: Man has free will (whether granted by God or a product of evolution). And we have free-willed ourselves and our planet into such a toxic state that we have rampant challenges such as no generation before. Cancer and autism and all manner of autoimmune disorders and on and on and on in numbers never before seen in human existence. And that’s not God. That’s man. That’s man going around without regard for the consequences, abusing his free will all over the place.

So, we had finally gotten to the heart of my conflict with religion. Free will versus God’s plan. And suddenly, I saw that the two could co-exist. The pastor spoke so confidently about the fact that God mourns, God grieves, at the horrible things we do to one another and the planet, and yet He does not revoke our free will. Instead, He continually gives us the tools we need and the opportunities to move in the right direction and make better choices.

God grieves. That’s what I heard. God grieves. He has this grand plan that we go about disrupting, and he continues to pave new paths to help us achieve His desired ends. This made sense to me, because I had long since dismissed the, “All things happen for a reason,” way of life. But with this twist, I thought, ok, everything happens for a reason, but sometimes the reason is because man has exercised free will. Just because things happen for reason doesn’t mean it’s God’s reason. Fair enough. And I realized, therefore, just because there is bad in the world, just because bad things happen that I cannot reconcile with a merciful God’s plan, that does not negate the existence of God in some form, whether it be a sentient being or a collective idea or the balance, energy, and force of the universe.

The entire sermon left me in deep contemplation. Not only had the sermon itself left me with much to consider, but the feeling I had in the church was transcendent. I felt closer to God, the energy of the universe, the center of it all, than I had felt in years and years. I felt connected. Changed.

CS lewisOver the next few days, I spoke to nearly everyone about having gone to church. I couldn’t get the experience out of my mind. I wasn’t suddenly converting to Christianity or anything, but I was more open to the concept of God than I had been in a very long time. I sat one evening with a dear friend whose Christian faith is central to her life, and I asked her, honestly, if she thought something special happened at church that day. “Do you think I had a special experience? Do you think there’s something different about how I responded to that sermon?” I asked. And what she said was so impactful. She replied with the slightest tears in her eyes, “Yes. I think God had you right where He wanted you. God had a message for you, and He made sure you heard it.” She drew my attention to the fact that I never go to any house of worship and hadn’t been to a church since I was a teenager. She said that church is certainly not always like that, and when it is, we should listen.

Less than a month later, Marty called and said Will had fallen down, something that was truly unprecedented. He had collapsed on the floor of a restaurant, seeming exhausted and unbalanced, and he had narrowed himself down to one food: gluten-free pretzels. The initial blood work came back, showing life-threateningly low potassium levels, among other issues, and the result was that Will needed to be hospitalized. The thing is, that blood work came back Thursday morning, May 22nd. I needed to be in Gainesville, but I was home in Kansas City. It was two days before Julia’s 7th birthday and her birthday party, and my mom, who had only visited for one long weekend in the past year and a half, was on a plane, en route from California.

And then I realized, a bad thing was happening, something I would truly hope is well outside of God’s plan. Will had exercised his free will in starving himself, and yet I had everything I needed in order to handle the emergency. My mom, who is so rarely with us, was literally an hour away and planning to be with us for several days. She could care for Julia and manage the birthday party and give Julia all the special love and attention she deserved while I went to tend to Will. Once my mom arrived, she told me she could stay longer than planned if need be, and off I went to Florida.

I flew out Thursday night, leaving KC on time, breezing through Charlotte, NC, landing easily in Orlando, and hitting no traffic or issues as I rented a car and drove up to Gainesville. Later, Rob told me that not one hour after I left Kansas City, a horrendous storm rolled in that delayed air traffic for hours. But I missed it.

From the airport, I touched base with my friend, Cathy, at the Center For Autism and Related Disabilities at UF. I knew we would need some help during and after this hospitalization. It turned out that Cathy was already in talks with Shands Children’s Hospital to try to make hospitalizations easier on children with autism and other challenges. There was no autism protocol in place, she explained, and one was sorely needed. She had a meeting set up for mid-June, and she could really use a parent’s perspective on what would help. So from the start, we were able to start paying back all this good karma, serving as a bit of a case study to help make an admission less traumatic on future patients.

Recovery is easier with Angry Birds.

Recovery is easier with Angry Birds.

After a few days in the hospital, it was clear that I was not going home on Tuesday as planned because Will was having surgery to place a g-tube. If I hadn’t started working for Lauren’s Hope, I would have been far more freaked out by this than I was (which was still plenty), because in the past year I had worked with a mom whose company makes real-food blends for tube-fed people. I knew it was manageable and safe. I wasn’t totally blindsided by the very concept. But I do work for Lauren’s Hope, and as a result, I immediately had someone to call for advice about feeding tubes.

My mom rearranged her schedule and stayed in Kansas City long enough to allow Julia to finish the school year, and then she flew Julia to Orlando before heading home to LA. As Julia and I had already planned to be in Gainesville just a couple of weeks later, I had already taken Nugget, our new dog, over to a friend’s house a couple of times to get acclimated and meet her dog, so she could watch Nugget during our planned trip. That friend took Nugget from my mom, so he was cared for. And as I had already planned to be working remotely from Florida while Marty was supposed to be on his annual Bonnaroo excursion, I had plenty of projects to tackle that didn’t require me to be in the office.

Everything came together, even in this massive crisis. My mom was there. Work was handled. The dog even had somewhere to go. On the Gainesville side, my friends came out in high style, watching Julia and Neville (our Gainesville pooch) for days, bringing meals to the hospital round the clock, and running errands we couldn’t leave the hospital to do. And through it all, in the quiet moments while Will slept and I watched him through the nights, in the scary moments of procedures and waiting, I felt very certain that we were supported, held, and not remotely alone. I was oddly sure that the message I had heard and received at Easter came when it did in preparation for this trial. It was a notion that was both uncomfortable and indescribably comforting. Believing required a leap of faith on my part, but when I allowed for it, a peace flowed through me that I cannot properly describe.

I refuse to sink.

I refuse to sink.

The way things came together went beyond the logistics of running our lives while Marty and I focused on Will, though. If Will’s low potassium had been caught earlier, he wouldn’t have been hospitalized, so he wouldn’t have gotten the g-tube and extensive therapy he’s now been granted. He would be stuck in a cycle of taking oral potassium while continuing to refuse food through months and months of waiting for and undergoing feeding aversion therapy, and even then, he would likely have ended up in the hospital for some other issue related to not eating. If it had been caught any later, literally within a few days, our 9-year-old son would likely have had a heart attack, which could well have killed him. Will got exactly the help he needed, exactly when it would help him the most.

There are coincidences, and then there are times when it seems that something else is so obviously at work that we would be fools to ignore it. In this crisis, my family has been blessed. Blessed with help, with support, with hope, with healing hands of skilled physicians, with opportunities and resources and strength and love.

I still don’t really know what to call this force that’s at work in my life. God or the universe or the Divine… truly whatever that big giant force is that moves things around in this world is meant to be called, it is present in my life and blessing me with abundance and gratitude, gentle guidance, and answers. And it occurs to me that this is nothing new. It’s just that now, I’m listening.

 

 

 

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Yesterday, this little blog took in more than 300 site hits after I posted Life Unraveled, my perspective on being interviewed by The Independent Florida Alligator about how Will’s needs and the current state of disabled affairs in Florida are just not compatible. After the newspaper article and blog post ran, friends and family started sharing these links via social media, and I checked in periodically throughout the day, trying to make sure I saw each post that was visible to me so I could thank everyone for posting and thank those who offered comments of support, good wishes, and prayer.

Then, something truly remarkable happened. People I don’t even know started sharing the links and donating to our fundraising link. They were touched by our story, moved to action, and began posting on their own walls, sending me Facebook messages directly or through mutual friends, and offering their help. I cannot adequately express how overwhelming it is to have such love, positive energy, and support coming our way, to know that so many people want to help me help my son. The response has been more than I could ever have anticipated, and I am so tremendously grateful to everyone who took the time to read about our little family, share the blog and newspaper article, donate to our fundraiser, post messages of support, and offer ideas and suggestions of their own.

So much has happened, I realized I need a place to list all of the incredible things we have going on. So this post, “Gratitude,” will be the place to see all of the ways people can and are helping us, and I will update it as events change, start, and end. If you’re so inclined, please share this with people who have asked you how they can help us.

Current and Upcoming Events:

November 10th – 15th, shop with Body by Vi!

Katherine Edna Boyette is a Body By Vi representative. I’ve never even met Edna; she reached out through my friend Stacey Steinberg. But Edna is contributing to our moving fund by donating her commissions for 6 days. Here’s the post she put out on Facebook: “A chilly Saturday Morning to all my FB friends. Since November 1, a lot of you have been posting what you are thankful for. Many says family, friends, healthy children, etc. I myself is thankful that I have a family that supports me and that I have a healthy daughter who is now living her life helping others via Peace Corps. But then some of us are not that lucky. If you want to know what I am talking about, please take some time to read the blog post of my friend Tara Fitzer Cohen. Her blog says it all –https://inappropriateoutburst.wordpress.com/2012/11/09/life-unraveled/. To help Tara, I am running a fundraiser starting November 10 to November 15, 2012. All of my 10% commission will go to Tara. If you want to help, all you need to do is to purchase any challenge kit from http://healthybody.bodybyvi.com/. With your purchase, you are helping Tara and at the same time you are giving yourself a gift of good nutrition. You can share this site to your friends too. I hope that you can find in your heart to help support this fundraiser.”

December 2nd or 4th (TBD): Join us at Corks And Colors in Gainesville!

Rebecca Barborak owns Corks and Colors, a painting studio in Gainesville where plenty of my friends have had super fun Girls’ Nights Out! I don’t know Rebecca personally, but still she Facebooked me and asked if she could do a benefit night for us! Corks and Colors will provide all of the supplies and donate 100% of the proceeds to my moving fund. With 34 seats available in the studio, at $30 a head, we could raise nearly $1000! Please let me know if you’re interested in joining us, which of the two evenings listed above work better for you, and check back for a Facebook event link once the date is set. 

 

Ongoing Ways To Help

You can also help by hosting an online or in-home Thirty-One party with me! Read more about being a hostess (and see all the great freebies and discounts hostesses get!) by clicking here: Tara’s Thirty-One Page! Of course, not everyone has time to host, even online, but pretty much everyone loves Thirty-One! So please consider doing your holiday shopping with me! I have started a “Tara’s Moving Fundraiser” link in “My Parties” (top left of my Thirty-One page). I will run these special fundraising parties for two weeks at a time so no matter when you order, you won’t have to wait too long for your items to ship! Please consider sharing this information on Facebook and letting your network know that Thirty-One has awesome holiday gifts! Plus, for all purchases through November 26th, you’ll earn a Medium Utility Tote for just $5 for every $35 you spend! Thanks!

You can donate to our move directly via PayPal at taracohen@yahoo.com, or you can donate through our GiveForward link at http://www.giveforward.com/helpingtara

What We Need:

If you’re local or will be in the area, we still need more moving boxes! Please email me or comment here to connect. Do you own a business? Please consider breaking down and setting aside your incoming shipping boxes for a few days for us! 

I am still looking for work. I’m continuing to take new clients through JayBird Media, but I am losing my health insurance in our divorce, and I need a consistent income to support my kids, so I’m looking for a “normal job,” ideally in the Los Angeles area. However, there ARE other places in the country where we will consider moving for the right job because there are many other places with equally outstanding autism services. As well, in marketing and social media, companies often offer telecommuting options due to the nature of the work. So if you know people in marketing and social media, or people looking for services in these fields, please consider connecting me with them no matter where they are located. My portfolio is available on JayBird Media, and you can learn more about my professional experience via LinkedIn

Most importantly of all, please know that I am nothing short of tremendously grateful for every single person, every bit of help, every prayer, every kind word, every burst of good energy that comes our way. My village is astounding, and my heart is full. I will truly never be able to feel I’ve paid this love forward enough. But I promise to try. 

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Will is on the couch fidgeting in his peripheral vision with a piece of frayed green yarn, artfully and very deliberately coated in masking tape by my hands under Will’s nonverbal instructions. Julia is watching Madagascar 3 for the thousandth time, and Marty, my soon-to-be-ex-husband and the kids’ loving dad, is in the kitchen blessedly making coffee. And me? I am at my desk, thinking about the article that ran about my little family in this morning’s Independent Florida Alligator.

Will was around 3 in this picture, but it’s one of my all-time favorites.

The reporter, Colleen Wright, a UF sophomore, showed up last week at my garage sale, having heard that my goal was to raise money so I can move to California where, while I don’t expect to arrive into some kind of Oz filled with free speech therapy centers on every corner, there are most definitely a lot more options and available, affordable, accessible services for a child like my son, Will, who, at 7 and a half, is nonverbal (we always say “preverbal,” because we remain hopeful) and has autism, OCD, sensory integration dysfunction, and a host of chronic health challenges. Wright questioned me for an hour that morning, respectful and inquisitive, but clearly with no background in autism.  (more…)

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I wish.

I’ve always been pretty organized. I’m just one of those, “A place for everything and everything in its place,” people. I like clear plastic storage containers and laminating label makers. I like hanging folders, color-coded files, and multi-sheet shredders. I like alphabetical bookshelves, DVD racks, and CD stacks. I like drawer organizers, shoe racks, and closets divided up by item type and sleeve length. I like knowing where the juice is in the fridge without looking and always having a spare Sharpie around just in case. I like all of these things. And I miss them.

Having kids changed my perspective on a lot of my organizational minutiae. It made me stop sweating the small stuff in a lot of areas, and it forced me to pick my battles as far as getting the family to comply with my hyper-organizational-ism. So, yes, it’s true that my daughter’s clothes are on pink hangers and my son’s are on blue and that I hang my kids’ clothes in sections: polos, tees, long-sleeved shirts, pants, jeans, shorts, skirts, and “other.” But it’s also true that they both get white freebie hangers from miscellaneous clothing stores and that there are completely weather- and size-inappropriate clothes throughout — and shoved in corners of — both their closets because keeping their wardrobes in check just isn’t a high priority these days.

Yeah, you parents know what I'm talking about.

I see quite a bit of this neurotic attention to detail and simultaneous disregard for perfection in Julia. She’ll insist on opening a drawer in her dresser to tuck in the miniscule amount of fabric from her pink tutu that got caught upon closing the drawer, and she cannot go to bed without putting the night’s book(s) back on the shelf. And yet, she’ll overlook her dolls strewn all over her floor and leave a Lego® minefield in the playroom just waiting to sabotage my bare feet.

I see it in Will, too. Will used to spend hours shredding sheet after sheet of newspaper until he found just the right strip to carry for hours or even days on end until it was soft as silk from constant handling. Or he would bring me a chosen piece of yarn and have me wrap duct tape (actively choosing over masking tape or Scotch® tape) around the end of it until it was just so. But then again, Will couldn’t care less about knocking every item off the bathroom counter onto the floor so he can stand naked on it and watch his iPod in the mirror. His room can be (and he often prefers it to be) strewn with his latest obsession, whether it’s ribbons or yarn or cardboard or newspaper.

Of course, it’s different with Will than it is with me or with Julia. I just like knowing where things are, so I have ways of making that happen and keeping our house running as smoothly as possible. But I can sleep if the jelly is on the juice shelf or there are towels waiting to be folded. Julia certainly likes her drawers neat, but she can leave the house without checking each one for protruding fabric. Will’s fixations, on the other hand, aren’t just quirky habits or personal preferences. Will’s behaviors are actual obsessions and compulsions because Will actually has obsessive-compulsive disorder (OCD). It comes with the autism territory. And it really, really stinks.

This is one of those things about autism that no one really tells you. True, as I learned about autism, I knew Will would have repetitive behaviors. I knew he would most likely lack that social filter that tells us which actions are (and are not) appropriate. But it wasn’t until I read about OCD as part of autism that it really clicked. I understood Will in a different way. I realized that his idiosyncrasies were more than his own peculiar preferences and desires. I saw that it wasn’t simply that he lacked social awareness and hence was free to indulge in his activities without concern for what others thought or a desire to conform. Suddenly, it made more sense to me why Will only eats from plastic spoons. White plastic spoons. And why he has to run in a circle around the driveway before coming in the house. And why he has to come out of his room at bedtime and watch his iPod in the oven’s reflection for a minute before going back to bed. This is OCD. These aren’t just “behaviors” he chooses to stubbornly engage in because he likes them and doesn’t care what we think. These are obsessions. These are compulsions. He doesn’t just want to do these things. He has to.

It’s an overwhelming thing, knowing your 6-(almost 7)-year-old has OCD. And severe autism. And of course then there’s the sensory integration dysfunction, cellular metabolism disorders, food sensitivities, and chronic digestive ailments. It’s quite a lot for a grown adult to handle, let alone a non-verbal child who doesn’t write or use sign language. I suppose it’s a bit ironic that, for someone who craves the order and calm of having each box and file labeled, having these diagnostic labels for my son was initially petrifying. Putting a name on any or all of Will’s traits and challenges made each more real. But now I see that the more I’m able to identify, name, and, yes, label, each of the individual issues that come together to form Will’s autism, the better I can understand him, and hence the better I can help, parent, and guide him.

Of course, it was also an overwhelming thing, 5 years ago this week, when Will was diagnosed with autism. It felt a lot like finding out someone I love had died: That paralyzing pain when his diagnosis was confirmed; the conflicting sensations of drowning in numbness while being assaulted by the migraine-painful assaults of every sight and sound; the denial and bargaining and grief. I remember that day. That hour. That minute. That very second. A sparkling crystal bottle of purple light slipped from the gilded shelf of my soul and shattered into stabbing shards for my heart to absorb while the light, with nothing left to contain it, slipped from my core into nothing.

In the Jewish tradition, we mark the anniversaries of the passings of those closest to us through rituals of prayer (Kaddish) and candlelight called Yartzeit. And so, every year on January 23rd,  I remember that day in 2007. It’s a bit like a Yartzeit for that shattered piece of my soul, for those dreams I held for Will, for the expectations I had of my little family’s future. I mourn my old life and the life I had planned. I mourn the days of being able to make sense of everything, of being able to create order out of any chaos with little more than a label maker and a scrub brush. I mourn the days of thinking it remotely mattered which shelf the juice was on or whether each light switch was labeled. I give myself that day to mourn and remember, and then I let go, remind myself to live each day with gratitude, and move on.

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The first time I intentionally told a complete and total lie, I was four. My sister and I were playing in our brown-shag-carpeted family room in upstate New York, and we decided it would be a really, really good idea to play with the broom, which probably wasn’t the worst idea except that we were playing right near our mom’s Tiffany-style glass lampshade. Long story short, the incident ended with my mom running into the room and scanning the scene: broken lamp, shattered glass in the shag, a clammed up six-year-old, and one petrified four-year-old holding a broom twice her height behind her back. No blood at least, but still, not exactly what a mom wants to see.

To my mom’s credit, when we pointed our fingers at one another, claimed complete innocence, and disavowed any knowledge of either the lamp (which we’d just blamed one another for breaking) or the broom (which I was still holding), she didn’t laugh or scream, both of which would have been appropriate, even simultaneously. No, my mom was quiet at that moment, and that scared the daylights out of me. We knew that she knew. And she knew that we knew. And that guilt was enough to keep me from lying again for a long, long time.

These days, though, I seem to lie a lot, mostly by omission, and primarily because most people don’t really want to hear the honest answers to their daily questions. Autism doesn’t make for polite conversation. Plus, some days I’m so seriously jealous of these women and their normal lives and typical kids that I kind of hate them a little for complaining about the things I would give my left arm for.

(more…)

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I remember the first time I “came out” to a stranger. I was at Target (as usual), and a woman said “hello” to Will and waited for him to respond. I said “hello” back for him, smiling and telling her, “Will isn’t being rude to you, ma’am. He has autism, so he doesn’t speak.” That night, I told my husband Marty about the exchange. I was incredibly proud of having publicly stated, to someone who didn’t need to know, that Will had autism. Doing so was a big step for me.

See, the thing about autism is that Will looks like everyone else (although, and I could be a teensy bit biased here, I do think he’s maybe a little cuter than the average kid). He “passes” for “normal” the way some of my gay friends used to “pass” for straight before coming out. People cannot look at Will and tell that he’s any different. And so I think it comes as even more of a surprise to people when I tell them he has autism.

At first, I didn’t want to tell people Will had autism because it was too painful. I would cry just thinking about autism, so I tried not to talk about it in front of Will. And I knew I didn’t have to tell people, given how Will blended in. So, in those first few months A.D. (that’s “After Diagnosis” in our house), I stuck to telling family and close friends. I even asked them to keep the news to themselves, not out of shame, but out of fear. I was petrified that a girlfriend would mention Will’s autism to another mom, and that I’d then run into that mom, say, at the park. I knew if I had a random acquaintance come up and give me her condolences (because that’s how it felt in the beginning; no one knew what to say except how sorry they were), I would completely break down on the spot.

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