Posts Tagged ‘Parenting’


A Preface

If you are under 18, please talk with a trusted adult before proceeding. This series addresses some adult topics with adult language. Thank you.

January 3. It starts.

I’m getting dressed, and there’s a … lump. Maybe a…a ridge. A… something. It’s something.

Is that a lump? What is that? If I’ve never had a lump, how am I supposed to identify a lump? How do I not know how to do this? Crap. Can I find the same thing on the other side? That seems like a reasonable thing to check. Ummm… No. Nothing else feels like that. Crap. It’s nothing. It’s nothing. It’s so totally nothing. I bet I can’t even find it again if I try. Crap. Yes, I can. That’s a lump. No. Yes. Damnit. Yes. That’s definitely a lump. It’s a lump. Well…well, fuck.


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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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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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Recently, one of my favorite bloggers, Jenny Lawson (aka: The Bloggess) came out publicly about her struggles with crippling depression and self-harm issues. Her naked honesty and raw expression of pain was intimate, arresting, and bravely self-aware. Thousands of people were moved by her words, writing, via site comments, direct messages, and emails, to this usually irreverent, amusing girlfriend of a blogger with words of comfort, support, and encouragement, or with stories about their own challenges and hidden fears. Not generally one to leave blog or article comments, I added my support to the mix and told Jenny (and the blogosphere) that I, too, struggle with depression.

A few hours later, my girlfriend, Holly, noticed a link to the Bloggess’ article on my Facebook page and asked whether I’d be addressing this issue on my blog. I’d been considering it, especially because Jenny’s post had touched on the issue of isolation – how those who are depressed struggle to achieve normalcy, and then, when they get back to their “norm,” they find there’s really no release or reward because they’re buried under all that went undone while they were “under.” I find this strikingly similar to not only my own experiences with depression but also to how life is when raising a child with special needs.

So I was tossing some ideas around, and I told Holly I would write this piece. But the truth is, even now as I type this, I’m wondering whether I’m brave enough to really share it. To really tell you what it’s like to live in the bell jar. I wonder if I can, because writing about depression and isolation takes me to a dark place. It takes me to that small but powerful black hole in my mind that occasionally, and for seemingly no reason, begins to suck in everything around it until my entire self is consumed in that blackness.

When I was 19, I read Sylvia Plath’s 1950s classic, The Bell Jar. Most people read this novel as part of an English class assignment at some point and find it beyond morbidly depressing and nearly impossible to slog through without drinking. But I read it because I was an English major, so I pretty much devour every book that comes my way. I knew a little about this novel by reputation, so I wasn’t surprised to find in its pages a bleak landscape portrait of a hopeless life. And I wasn’t repulsed or morbidly fascinated by the strangeness of Plath’s mostly autobiographical take on the world. I didn’t find it odd or scary or hard to read at all. I found it comforting. I realized I wasn’t alone.

From a very young age, I had experienced bouts of depression, some nothing short of crippling, making it nearly impossible to get out of bed, while others were mild enough to be little more than phases of annoying moodiness. I sometimes felt alone in crowds, unable to join in fun activities with peers, tired when rested, and lonely even when home or at school. I felt trapped and scared, always on the periphery of things, and not really sure why it seemed like no one else felt quite the same way I did. This was depression for me as a kid.

I remember being about 7, crying in the family room of our southern California home, and when my mother asked me what was wrong, I said, “I want to go home.” She hugged me and said, “But you are home.” And I knew that, but I just had no words for how isolated I was in my own mind, how bereft and empty I felt. Homesickness was the closest emotion I could express to the yearning I felt inside for a sense of peace and stability, the longing I had for emotional normalcy and knowledge of my own security. I was 7. And I was depressed.

Still, on the outside, most of the time, I was a pretty normal kid. And through middle and high school, I managed to keep my depression to myself, at least outside the house. I was actually fairly outgoing and involved in school activities. I held part-time jobs, I had boyfriends and went to football games and did all that typical adolescent stuff. And the majority of the time, I was really fine. True, sometimes I was faking it because I knew that’s what was expected of me. But mostly I was ok because I was busy and challenged and determined to be normal. Still, I’m sure my close friends from high school will easily remember me sitting alone writing morbid poetry when I was in a funk. But people don’t really think of Honor Roll students in preppy clothes who can still answer teachers’ questions while writing in their journals as “troubled children,” so I kind of coasted along.

In fact, it wasn’t until the early 90s, when I was in high school, that depression became something people really talked about. That was when Prozac came on the market, and depression became less of a dirty little secret and more of a treatable medical condition people started seeking help for openly. But even with depression more out in the open, I didn’t know that’s what I had. I just knew sometimes I was really, really sad for pretty much no reason.

Around that time, I had this one truly amazing teacher. It was my senior year in high school, and he turned me from a preening, self-impressed, flowery writer into someone who could appreciate the deliciousness of simplicity. He gave me the gift of telling me I wasn’t as good a writer as I thought, along with the knowledge that I could be and the tools to do so. And so I wrote. I wrote and wrote and wrote, and everything I wrote, this teacher read and marked and really worked through with me because he saw my potential.

He also saw the underlying sadness of this girl who was bubbly on the surface but empty in the eyes. He pulled me aside one day and said, “Next year, you’ll be in college, which is where you really belong. You’ll be challenged in ways you can’t imagine yet, and you’ll be free to learn who you really are and what you can really do. Just wait. Hang in there.” And because he’d paid attention to me, because he’d listened, because I felt like he actually knew what I could do and who I was inside, I listened, and I waited to burst free like a caterpillar itching to escape the cocoon.

That same year, at 17, the depression got worse, and I asked my parents to put me in therapy. My dad thought therapy was a big load of crap, but my mom was supportive in this, and so I went to the first of what would become a long line of therapists, psychologists, and psychiatrists that leads up to the excellent counselor I talk to these days.

It was a bit of a family secret, my depression. And I felt ashamed that I couldn’t control my own mind, master that black hole. Sometimes, it seemed like therapy made things worse because all I was doing was talking about the very things that made me so depressed. But over time, I learned better coping skills. I learned to avoid the things that triggered my depressions, to see myself slipping before I fell, to make myself get up and move and breathe and live when those were the last things I wanted to do.

And finally, when I was 20, everything came to a head. I was in the worst depression of my life. Coping skills were worthless and nothing, nothing seemed to help. My mother found me a phenomenal doctor, and I sat in this woman’s office week after week, month after month, trying to find a way to climb out of the black hole that had consumed my life. And one day, she said to me in her lilting accent, “Tara. Present stress brings up past trauma.”

And that was it. I realized, in that moment, that when I allowed the black hole to expand, it didn’t suck me into nothingness. It drew me in to a place where only the bad things lived. So I was dwelling in a movie theater that played only the worst reels from my life, and that brought up only the worst feelings. My current crises weren’t unconquerable obstacles in and of themselves. Rather, I was trying to fight them one-handed from the front while sword fighting my past with my other hand behind my back.

It’s a bit like smelling coriander and immediately being transported in your mind to the last time and place you experienced that scent. Only coriander is nice and pleasant, and depression, if it had a scent, would be more like sulfur and brine.

So I learned to make peace with the past, and, just as importantly, to leave it there. I learned to deal in the moment with the crisis of the moment without letting my current emotions be compounded by the scent memories of my past. I slip sometimes, and I even fall still. But I get back up and keep moving because that’s what life is: motion. And although I loathe that black hole in my mind, its presence and impact on my life is exactly the thing that lets me know that I can handle nearly anything. It’s what tells me that I can be the strong mother my children need, that I can be the rock they lean on, that I can live with Will’s autism and teach him to live proudly with it as well. It is part of me, but it does not define me. Only I can do that.



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Last month, I began guest blogging about life as a special-needs parent for Momnificent!, an outstanding site and business run by Family Success Specialist and Life Coach, Lori Radun.

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

It Takes A Village

People say it takes a village to raise a child. But what if that child has special needs? What then? That is: What happens when the village doesn’t know how to raise the child? As a mother of a typical child and a child with autism, I see every day the vast difference between the skills necessary to parent my four-year-old chatterbox of a daughter, who is a typical child, and those needed to raise my six-year-old, non-verbal, energy bundle of a son, who has severe autism. With both kids, as is the case for nearly all parents, learning how to guide them through the world has been an exercise in on-the-job training. However, with my daughter, I have plenty of resources at my disposal when I need advice. I can call other moms or research online for good tactics and strategies. But with my son, I find that, quite often, I’m going it alone. And, some days, I wonder: Where is our village?

For parents of typical children, the village seems to form all by itself. Mommy playgroups and baby gymnastics, daycares and neighborhoods – the village is there for the joining. We moms (and sometimes dads!) form intimate bonds based on our shared experiences in child rearing, become close friends, and care for one another and each other’s children as we would our own families. When we’re sick and our spouses or partners are out of town on business, the village pitches in to care for our kids. When a new baby arrives, that mommy network shifts into high gear with dinners and help around the house. But when a child is diagnosed with autism, the village is at a loss. Those who don’t live in the autism community simply (and understandably) don’t feel prepared to babysit a toddler with autism, as much as they’d like to help by giving that child’s parents a much-needed break. They don’t know how to help or what the family needs, and that means, ultimately, special-needs parents are pretty much on their own.


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