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Posts Tagged ‘Family’

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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Waiting for Dad to pull the car around. Will had not been outside in 11 days. Time. To. GO!

Time to go!

We are home. Well, we’re home at Marty’s house. Julia and Neville are spending one last night, each with one of my dearest friends, so Marty and I can have this one quiet night at his place, getting Will settled into his usual surroundings without the chaos of adding an excited little lunatic who would be barreling around the apartment, bouncing off the walls…or the dog, either.

It’s been a long road. The days blurred together in a haze of doctors, nurses, techs, therapists, surgeons, consultants, dietitians, social workers, hospital staff, and friends trailing in and out of Room 4539. When Marty called me on May 22 and told me Will needed to be admitted to the hospital, our pediatrician thought we would be there for a day or two. By the time we left Shands this evening, Will had been in the hospital for eleven days. In some ways, it felt like we were there forever; we fell into a bit of a routine and got to know the compassionate, talented staff. But for the most part, our time in the hospital flew by because we were so busy and worried. Will’s status changed by the hour, sometimes by the minute, and there were moments when I smiled and sang to Will through a procedure while wondering if he was going to die.

As good as it feels to actually have brought Will home, there were moments, I’ll admit, when I was afraid to do so. In fact, yesterday, I was reminded of The Shawshank Redemption, to draw a completely false parallel, when Red, who has been in prison all of his adult life, identifies himself as, “an institutional man.” “These walls are funny,” he says, “First you hate ’em, then you get used to ’em. Enough time passes, you get so you depend on them.” And while the hospital is certainly not prison by any means, we certainly hated being there initially, and we were not in control of how long we would be staying. As time went on, somewhere along the line, I started to fear leaving. What if I couldn’t learn all this tube-feeding stuff? What if we got home and Will refused the tube feeds? What if his “button” got infected or pulled out or if there was some other problem I didn’t even know could happen? At least in the hospital, there was help. There were people there around the clock, looking out for us. Here, we’re on our own.

All smiles on the short ride home!

All smiles on the short ride home!

I’m sure those feelings were exacerbated by the fact that I hardly left Will’s room, let alone the fourth floor. In fact, the entire 11 days he was there, I left the hospital for a grand total of about two hours. When we left this evening, I hadn’t been outside since walking downstairs for a few minutes with a friend on Tuesday.  It just occurred to me that that was six days ago. It’s not that I didn’t want to go take a walk or run to the store. And Marty certainly offered to take the night shift and let me go sleep at his place. But I just couldn’t leave. Partly, I was irrationally sure that something bad would happen while I was gone. But it was also simpler than that: every single person who works at the hospital is on a different schedule. The pediatricians, med students, surgeons, nurses, therapists, consultants, everyone. They all come … whenever they come. And if I were to leave for an hour and miss the pediatric team doing rounds, for example, that’s a big deal. I’m Will’s advocate. I’m the one who asks questions and explains his history and navigates the foreign terrain of medical-land. That’s my job. So I stayed.

Almost every night when Marty went home, I would go to sleep when Will did, or close to it, knowing we would be woken throughout the night and hoping to get a few hours of sleep in a row. And almost every day, I would hold Will still through blood draws or sing through tears during a procedure, or rub his feet and legs while he played with his iPods and high-fived the nurses.

Supply central. Of course, there's more stuff in the kitchen, and then there's the IV pole onto which the feeding pump is affixed and the formula bags are hung. It's new, but it'll get to be normal enough pretty soon.

Supply central. Of course, there’s more stuff in the kitchen, and then there’s the IV pole for the feeding pump and formula bags. It’s new, but it’ll get to be normal enough pretty soon.

Now that we’re home, there will be a new routine. We started it this evening by organizing all of Will’s feeding supplies and doing his first home feeding. We will get into a routine here, just as we did in the hospital. We will start taking turns working and tending to Will. Julia will go to camp. Neville will snore under the table. Life will get back to normal. A new normal.

Photo Jun 02, 10 50 20 PMAnd sooner than I think, Julia and I will go home to Kansas City, and Marty will live in this new normal with Will. And we will all miss each other. And I will cry more than I admit, knowing that my son is so far away, always feeling like part of me is missing, just as I know Marty feels about being away from Jules. But the thing is, we’ll do it anyway. Because no one is ever promised a problem-free life. We aren’t even promised a life. So when we get a second chance at it, when we come that close to losing it all, instead of focusing on the fear or the sorrow, we owe it to ourselves and our kids to live each day with pure gratitude for the opportunities to succeed, screw up, love, struggle, laugh, play, work, grow, learn, and simply BE. Because otherwise, what were those 11 days for?

 

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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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This week, I began guest blogging for Momnificent!, an outstanding site and business run by Family Success Specialist and Life Coach, Lori Radun. I’ll be posting about life as a special-needs parent on Lori’s blog once a month for now, and I’ll share links here.

Here’s an excerpt of this week’s post. Follow the link at the end to read the rest at Momnificent.com!

I Am Alice

When my son Will, my baby, my first-born, was diagnosed with autism at 22 months, I felt as if the ground had opened up and swallowed us whole. I felt we’d been shoved, head first, into this bottomless abyss and were in a slow-motion free fall that might never end. And then, on the other hand, I wasn’t sure I wanted it to end, wasn’t sure I wanted to know where rock bottom actually was, because surely this moment, this panic, this grief had to be rock bottom. Surely it couldn’t be worse. But in the days and weeks that followed, I found that it could be worse, and still we were in a free fall.

In those first months, pregnant with my daughter and reeling from Will’s diagnosis, floating from doctor’s offices to therapy centers to support groups, I watched the world move around me like Alice flying downward through the rabbit hole. How did we get here? Where IS here? How did I not know this whole alternate existence was right beneath my feet? When and how will we go home? Only Alice wasn’t 8 months pregnant with a two-year-old on her hip and she careened downward to Wonderland. And there was no chance I was going to suddenly wake up.

Eventually, and I really couldn’t tell you how long it took, I stopped falling. I started to find level ground. I gained my footing in this strange new landscape that had suddenly become my life. I realized I wasn’t actually in an abyss, hadn’t fallen down the rabbit hole, and actually could wake up from this nightmare to some degree. True, I couldn’t change the fact that Will has autism, but I could change one thing: how I responded to the situation.

READ THE REST AT MOMNIFICENT.COM!

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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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As a little girl, I kept a diary. I entrusted my deepest secrets to this silent confidante, my safe haven. My diary was a mute therapist, a free space where I could speak my mind without shame or fear or reprisal. My diary was a little hidden piece of me, tucked away in the dark recess beneath my headboard.

My childhood passed into adolescence, and the stack of flowery little diaries gave way to a neat pile of black-and-white Composition Books straight out of a 1950s high school movie. My diaries had become journals. My journals had become a project. And along the way, I had become a writer.

Today my old diaries and journals are stored away, rarely opened but always held onto, tied in bundles with red satin ribbons, living in perpetual safekeeping like so many baby photos and pressed flowers. I doubt I’ll ever let them go. They are little, written portraits of me. And, when, on rare occasions, I look back at them, I notice one overwhelming trend that holds true from my 4th-grade, Holly Hobby, lock-and-key, 40-page mini-diary to my leather-bound traveler’s journal from my senior year of college: They’re all incomplete. Every single volume has at least one big, huge time gap.
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