Monday, May 31, 2010


Tomorrow marks the first day of a new chapter in our family life: it's the day I pick up the phone to remind my son's neuropsychologist, as she requested, to call her on the first day of June so that she can schedule E-Niner's relatively annual assessment.

What makes this assessment different from every other assessment she's done for him -- and the reason why tomorrow marks a new chapter in our life -- is because she will conduct this round of testing with the purpose of furthering the case for residential treatment for my son.

Prior to tomorrow, I've been doing a lot of hemming and hawing about maybe, possibly, considering placing my son in an environment out of our home. As of tomorrow, indirectly but substantially, the process begins hard and fast. It's another stake in the ground.

I've come to some sort of peace with the fact that my son needs round-the-clock psychological care, the kind that can't be provided in a home no matter how many aides we hire to help him out. I've come to the resolve that if my son were to live somewhere else indefinitely, all members in our family -- including our four year old -- will feel more like, well, individuals than cogs orbiting our son's psychological illness.

What I can't predict, though, is whether or not moving forward like this will break our nuclear family into shards so fine, far and wide that we won't be able to recover. At the same time, I can't predict that the status quo isn't going to do the same thing, either. It feels like our marriage is hanging in the balance. We've been flung to the rafters, and perhaps the only way down is to crash.

My husband doesn't want to place E-Niner in residential treatment. Though, all four of E-Niner's grandparents, his school teacher, the treatment team at his therapeutic school, the treatment team at his former therapeutic school, his psychiatrist, his counselor, the family social worker, his at-home aide, his pediatrician, and his own mother all believe E-Niner will get the care he needs in this setting. It feels like the whole world against my husband, and he's all sorts of pissed off.

I've been avoiding him, and vice versa for several weeks now. What I didn't realize is that for maybe perhaps the past few months, he was giving me the silent treatment. To not even register that your husband is giving you the silent treatment shows just how dysfunctional and lost we are. Now, I feel almost as if we're in some kind of western showdown; that we've stepped the requisite 20 paces from each other and have drawn our weapons. One false move, one flick of the wrist, and somebody fires like mad. In other words, things are tense.

Thing is, I don't see much relief easing up any time soon. In fact, tomorrow's phone call and later, things are simply going to get worse and worse. Will it come down to the day that a placement gives us an offer? Will my husband feel bullied into accepting the placement, and then decide to tear up our family afterwards? Will I ultimately follow my husband's desire not to place, squelching my own sense of what is absolutely right and necessary for E-Niner, and turn the tables on our marriage? Will it be me giving him the silent treatment for months on end? And then will our marriage finally dissolve? Is the marriage dissolving right now, right before my very eyes?

I'm taking everything daily as it comes. But as I look around and witness the possibilities, our path is looking mighty bleak right now. As the saying goes, something's gotta give.


Though what I'm struggling through may feel hard, I don't at all minimize the loss of loved ones that so many Americans have felt for their family members killed on duty. My heart not only goes out to all who grieve today and everyday, but to all the women and men whose sacrifice has given the rest of us a freer country.

Saturday, May 29, 2010

Taste-bud chops


Now that he’s nine, I rarely call my son by the nickname Fluffy unless I’m writing about him. I call him by a host of other nicknames--Scoopie, Fluters, Tito, Sweet Pea, Muffin, Goo Goo and, yes, sometimes his own name when I want his attention during a lesson or at the park or when I’m in the kitchen trying in vain to figure out what he might deem acceptable for lunch. I’ve heard that there is a typical narrowing of the food choices that happens around 8 or 9 and continues for a few years before it starts to expand again around age 11 or 12--something about an explosion of taste buds which confers a different, more intense experience of taste. Apparently, it takes some time to get used to. It’s not true for all kids, of course, but it’s an apt metaphor isn’t it? Feeling more means shutting down until one gets a handle on how to integrate the new sensations, information, until one gets one’s taste-bud chops, so to speak. 

We lost him a couple of weeks ago. Fluffy. He was outside playing with the brother and sister who live across the street, something he does as a matter or course now, which is a small miracle--no—a large miracle considering the profound difficulties even a few minutes of peer interaction brought for most of his life. This spring, he and the kids across the street collect plants for spells they’re concocting (á la Harry Potter), gather clues for a spy game (á la 39 Clues). They have squirt gun fights on hot days and jump on their bikes to ride around the block just the for the joy of moving fast and unencumbered.

It’s a measure of how significantly things have changed that this goes on outside while Dave and I are inside together cooking dinner, answering the phone, putting those little circle things on the bottom of chair legs so we don’t keep scratching the wood floors. We check on him from time to time if it’s been a while since he tromped back in to get another bowl or search for his cape or refill his water bottle which may have lost a drop (the horror that his ever-present water bottle, the one that is slung over his shoulder at all times even when he wakes in the night to go pee, would not be filled to the tippy top!).

But on this day, we became aware of the silence out front, in our driveway, across the way on the dead-end street where the basketball hoop is hung at five feet. We went out to look, peer up and down the street, call for them, checking our watch. No sign of them.

We waited to see if they would appear after a lap around the block.

One minute.  

Five minutes.

Our neighbor was out of her house by then.

“Where are they?” I said.

“I don’t know.” She shrugged.  

For her, this was a weekly occurrence. She parents, admittedly, by benign neglect and her children thrive by this style. I’m used to it now but when we first moved here nearly two years ago, I would stare at her in open-mouthed fascination and alarm when she'd ring my bell to ask if I'd seen her then five-year-old son anywhere. She was an entirely different species.

“How long have they been gone?” I asked.

“Over fifteen minutes,” Dave stated grimly, already on his bike. His helmet strap was barely fastened before he took off up the road.

“Did they say anything about where they were going?” I asked, my pulse suddenly beating in my neck.

“Not to me,” my neighbor replied, lifting the scooter off the ground where it lay against her front steps.

I jogged to my bike and took off in the opposite direction from Dave, my body already beginning to shake. My neighbor joined the search in solidarity to us. She knows Fluffy. She knows this was not usual for him, for us.

I could hear Dave's deepest bellow, calling our son’s name, his real name, over and overOkay, Okay, I repeated to myself in a whisper as if settling a skittish pony, hoping the sing-song would block the frightening images and thoughts from my mind. This is my territory, after all, me of the Unwanted Thoughts Syndrome and Death Panic. I pedaled alone two blocks away, sucking in my breath as if through a microscopic hole.

What idiots we are, I chided myself as I scanned the passing yards.  How complacent we’ve become! This is my punishment for not tracking his every move! 

Suddenly, I saw L., the neighbor boy zoom by on his bike, his sister, M., in her Little House on the Prairie dress and apron, propelling herself behind him on her scooter. But where was Fluffy? And why did their faces look like that? Their mouths set in tight horizontal lines?

I stood up to pedal more athletically, my apron pushed to the side, my wedge-heeled sandals making a surprisingly good purchase and then I saw Fluffy with Dave come into view from the far right, riding their bicycles side by side like any other outing and my whole body did this fluttery thing as if the moth of dread had lifted her wings and flown away.

There is the gift in crisis, a clarifying point upon which all but the essential falls away. When I first found out about Fluffy’s autism, I didn’t struggle with creative angst, career confusion. I didn’t give a shit what I looked like or whether you agreed with what I did and said and thought. I was an instrument of my son’s needs. I would never have lost track of him. I didn’t let myself stray from his side. It was too risky. Fluffy didn’t have discretion, the ability to take in his surroundings, make sound decisions, respond appropriately or safely to other children. I wasn’t going to put him or them at risk.

That was five years ago. A lot has changed since then. Fluffy has grown and changed in remarkable ways. We’ve both integrated a lot of new information, new sensations, stepped into larger interior and exterior landscapes. The gift of this time comes not from laser focus and necessary crisis perspective but from navigating complexity, grappling with my sticky relationship to trust, in myself, in Fluffy, in the world, tending to myself and letting myself stray because more and more of the time, the situation isn’t risky. Even on that day.

Once my heart-rate returned to normal, rules were clarified, acceptable territories were clearly mapped and community service was doled out to make up for the transgression. He was just being a kid, exploring the world of his imagination, breaking some rules, pushing the boundaries, scaring the wits out of his parents, yes, but still, just being a kid.

Since then, there have been many late afternoons when Fluffy is outside with the kids across the street and Dave and I are inside, making dinner, answering the phone, putting those circles on the chair legs. Because aside from Fluffy being safe and sound, this is the part of the story I like best: the lesson of that time was not about complacency, idiocy, punishment, or contraction. It was about riding the moments of uncertainty and returning to a place of expansion. I guess you could say, we're finding our taste-bud chops which can look pretty ordinary to the untrained eye.

Then again, maybe it is ordinary. Extraordinarily so.  


Worth Every Penny We're Paying Her

This will be the second summer Riley will be attending a three hour a day music camp. The camp is four weeks and costs about $350 dollars. In addition, we have to pay out of pocket, for a one-on-one aide, which costs more than double the price of camp.

It hurts my husband. He looks physically pained when we talk about the money.  

We absolutely adore the aide we send with Riley. She is one who worked well with her in the public school before we took her out, and she totally "gets" our girl. It's just no one else has to pay triple the cost of camp, you know? That's what bothers him. We've paid out of pocket for almost everything she's needed since she was two. The discrimination by insurance companies against kids with autism is deplorable. The money thing just gets to him sometimes.

So in signing up Riley this year, one of the employees at the camp was setting things up for us, and we were talking about our aide, and she said how much she loved her and told me a little story about something that happened last summer.

Apparently, there is a big meeting with all the campers first thing each morning, before they separate into groups. Two weeks in, during this meeting, Riley blurted something out. It was the first she had contributed, and it was a big deal, to speak before a group of dozens of children, especially since she didn't know them well. Riley is a rule girl. To talk out of turn, she must have been super stoked and engaged.

Well, apparently when she did this, one of the main counselors chastised Riley sternly for not raising her hand. 

Riley shrunk.

Her devoted aide, was so ticked off, she took this lady out. She is this tiny little black woman, no bigger than a minute, and she went up to head honcho camp lady and said,

"You don't do her like that."

I can picture her pointing her finger and the "Oh no you didn't" rippling through her body. She loves the kids in her charge and you just don't mess with them.

She went on, "This little girl finally had something to say and you shut her down. Don't claim to take kids with special needs and then treat them that way."

Then she marched upstairs and told her boss.

Upon hearing this story, my husband got over his pain.

With tears welled up in his eyes he said,

"We'll pay her anything."

Thursday, May 27, 2010

Mindfulness-Based Stress Reduction: An Important Tool in Mitigating Compassion Fatigue in Caregivers

Mindfulness-Based Stress Reduction (MBSR) can help caregivers reduce compassion fatigue. MBSR is a holistic mind/body approach developed by Jon Kabat-Zinn at the University of Massachusetts Medical Center in 1979. MBSR is "[...] based on the central concept of mindfulness, defined as being fully present to one’s experience without judgment or resistance". (Cohen-Katz et al, 2005) The MBSR program recommends using meditation, yoga, relaxation training as well as strategies to incorporate these practices into every day life.

Research on the effectiveness of MBSR is highly conclusive: over 25 year of studies clearly demonstrate that MBSR is helpful in reducing emotional distress and managing severe physical pain. In fact, MBSR has been used successfully with patients suffering from chronic pain, depression, sleep disorders, cancer-related pain and high blood pressure. (Cohen-Katz et al, 2005) Based at Toronto's CAMH, Zindel Segal has developed a mindfulness-based cognitive therapy program for treating depression that has shown to be highly effective.

MBSR and Compassion Fatigue

Researchers recently turned their attention to the interaction between MBSR and compassion fatigue (CF), to see whether MBSR would help reduce CF symptoms among helpers. One study of clinical nurses found that MBSR helped significantly reduce symptoms of CF, as well as helping the subjects be calmer and more grounded during their rounds and interactions with patients and colleagues. (Cohen-Katz et al, 2005) Another study investigated the effects of teaching mindfulness-based stress reduction to graduate students in counseling psychology. The study found that participants in the MBSR program "reported significant declines in stress, negative affect, rumination, state and trait anxiety, and significant increases in positive affect and self-compassion." (Shapiro, 2007)

The Full MBSR Program

"The MBSR is taught as an 8-week program that meets approximately 2.5 hours a week and includes a 6-hour daylong retreat between the 6th and 7th weeks. Participants are asked to practice the mindfulness techniques 6 days a week as “homework” and given audiotapes to facilitate this. Group sessions include a combination of formal didactic instruction on topics such as communication skills, stress reactivity, and self-compassion and experiential exercises to help participants integrate these concepts. The program is described in detail in Kabat-Zinn’s textbook “Full Catastrophe Living: Using the Wisdom of Your Body and Mind to Face Stress, Pain and Illness.” (Cohen-Katz et al, 2005)

As you are reading this, you may be thinking: "I don't have time to take part in a 2.5 hour, 8 week program!" Nor do you have to - let's extract the main features of MBSR and see how you might integrate them in your own life routines.

Incorporating MBSR into Your Life

The key strategies of MBSR mirror the best compassion fatigue reduction techniques described in my book The Compassion Fatigue Workbook: developing self-awareness, self-regulation (how to cope when events are overwhelming and/or stressful) and how to balance the competing demands in our lives. (Shapiro, 2007)

In the Shapiro study with counseling students, five mindfulness practices were taught, adapted from Kabat-Zinn's program:

1) Sitting meditation: This is the cornerstone of MBSR - To develop, over time, a sitting meditation that is done daily, if possible. It involves the "concentration of attention to the sensations of breathing, while remaining open to other sensory events, and to physical sensations, thoughts and emotions."

2) Body scan: A very effective exercise from the field of relaxation training and stress reduction. The full version of the body scan encourages you to focus on each part of your body one after the other, to identify where you are holding tension. This process is normally done lying down, in a quiet room. If time does not allow you to do the full scan, you can also carry out a modified version of the body scan:

Sitting in a quiet, peaceful room, close your eyes and focus on your breathing. Notice what is happening in your body: Working your way down from the top of your head, notice how your jaw, neck and shoulders are feeling at this moment. Remember to keep breathing and, if your mind wanders, gently bring it back. If that is all the time you have, take three, slow deep breaths through your nose and gently open your eyes. If you have more time, work your way down your body, noticing how your shoulders, arms, stomach, calves and toes feel right now.

Where to find the full body scan exercise:

On the web: Through Google, I was able to find several audio and scripted body scan exercises in a matter of seconds.

CD: Creating Inner Calm by Mark Berber (only available at Indigo/Chapters, not Amazon)

Books: The Anxiety and Phobia Workbook by Edmund J. Bourne (2000) has a body scan script as well as many other excellent resources on managing stress.

3) Hatha Yoga consists of "stretches and postures designed to enhance mindful awareness of the body and to balance and strengthen the musculoskeletal system." (Shapiro, 2007)

4) Guided loving-kindness meditation: A meditation practice which focuses on developing loving acceptance towards oneself and others. You can find examples of loving-kindness meditation on the web.

5) Informal practices: Exploring ways to bring mindfulness into our everyday life (while waiting in line at the grocery story, stuck in traffic, dealing with a challenging patient, etc.)

Want to know more? Where to start?

You can learn more about MBSR on your own or by taking a course or attending a workshop.

On your own

Audio Cds:

Kabat-Zinn has produced a collection of mindfulness meditation CDs that can be purchased on his website and on amazon/indigo. Your local library may also have them. Kabat-Zinn's site also has a useful FAQ which describes the different CDs and guides you on which one to buy. He also has an informative blog and resources:


Kabat-Zinn, J. (1990) Full Catastrophe Living: Using the Wisdom of Your Body and Mind to Face Stress, Pain and Illness.

Kabat-Zinn, J. (1995) Wherever you go, there you are: Mindfulness Meditation in Everyday Life.

Segal, Z. et al (2002) Mindfulness-Based Cognitive Therapy for Depression.


If you can get your hands on it, a good introduction to MBSR is offered in Bill Moyers' 1993 PBS Special "Healing and the Mind" featuring Kabat-Zinn in the Stress Reduction Clinic.


Many mid to large sized cities offer MBSR programs several times a year. Contact your local meditation/yoga centers to see if one is being offered in your community.

Final thoughts

If you are new to meditation practice, the most important thing to remember is that you cannot fail at meditation. There will be times where you can meditate with ease, and other times where your mind will be racing and you will have great difficulty focusing on being mindful. (You may also fall asleep). All of those are part of the process of mindfulness practice. Try not to judge your meditations. Simply try to refocus on your breath and on the meditation itself. It takes time and practice but it could literally save your life.


Cohen-Katz, J., Wileys, S.D., Capuano, T., Bakers, D.M., Kimmel, S., & Shapiro, S. (2005). The effects of mindfulness-based stress reduction on nurse stress and burnout, Part II: A quantitative and qualitative study. Holistic Nursing Practice, 19, 26-35.

Shapiro, S., Brown, K.W, & Biegel, G.M., (2007) Teaching self-care to caregivers: effects of mindfulness-based stress reduction on the mental health of therapists in training. Training and Education in Professional Psychology, Vol. 1, No. 2, 105-115.

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This article was originally published on my blog:

Wednesday, May 26, 2010

putting it out there

Recently, I've been wondering something that I'm sure many parents wonder - how much do I need to tell any given person who has contact with my son?

I've also been wondering how much to share in my business life - I keep a blog for my business, and I currently neglect a blog about our journey with Asperger's.

I asked the question at a recent workshop I attended, because I really wanted to know - what was the ideal blend of one's personal and professional lives? How much information is too much information? Can I be raw with emotion on my blog and still hope to book jobs? (I do work in a creative field, so there is a little bit more leeway there.)

The answer was - Disclose as much as you feel comfortable with, but be 100% honest with all disclosure.

Part of me really really wants to sit down and write a blog post that says 'This is my son.  He's awesome. He has Asperger's.' Part of me wants to print that on a shirt and wear it around. Maybe make a flyer that I can hand to people who tsk tsk us in public.

But part of me is so so scared. Who will judge him? What will it mean to be judged? I can't erase that first impression, but neither can I erase the first impression of a public meltdown. So I wonder if people would react differently if the public meltdown was tempered with some information. What's really happening. Why. That he's not just being a bad kid.

So. 100% honesty. Varying levels of disclosure. I'm test driving it.






Tuesday, May 25, 2010

Playtime on our street


Something is making me really happy this spring, a sight that's more uplifting than all the bright flowers in bloom: Max is out there playing with the kids on our street, for the first time. 

Something is making me a little sad this spring: He's not exactly being included. 

Sunday, I was in the house cleaning up after dinner; my husband had taken the kids outside. When I caught up with them, Dave was chatting with a mom as Max and his little sis were playing Frisbee with some dads and kids. Only Max wasn't exactly playing; everyone was throwing the frisbee as he just sort of ran around between them. "Could you please toss the frisbee to Max?" I asked one dad. He did, and Max tried to catch it. Then he picked up the frisbee from the ground and did his best to toss it. Then everyone went back to playing frisbee amongst themselves, and Max went back to running around. He seemed happy, and I decided not to interfere again.

Later, kids were doing relay races on the golf course. They all lined up, including Max. "Awww, he's going to be too slow," one kid said. I looked at him. "That's not really nice," I said. "He's going to race at his own pace."

And then the kids were off and dashing across the green, green grass, and there was Max doing his wobbly run, lagging behind. But he made it to the sand pit and I was so proud. This, the child who wasn't supposed to walk, let alone run.

When all the kids had made it back, Max decided he was going to start the next race. "Errrrry, ehhhhh, goooooooo!" he said, his version of "Ready, set, go!" 

And all the kids took off. Twilight was falling, and it was just me and Max, standing there watching them race away. And we were both smiling. 

Monday, May 24, 2010


I had an amazing encounter yesterday, with an adult who has autism. It was at the public library, not the branch that I usually visit. In fact, I haven't been inside this one in at least 5 years, probably more.

This branch is in the part of town where I used to teach Band, before I had kids of my own. Little E and I had gone there just to hang out (in the A/C) and read some books since we had an hour to wait before his speech therapy appointment. We're sitting in the children's section, reading Stone Soup, and a man began walking toward us. He had an official-looking ID card sort of thing hanging from a lanyard around his neck, and as I looked up to see his face I instantly recognized him.

During one of my first few years of teaching, circa 1995-ish, a new young man and his family moved to town and enrolled at our school and in my band. I was told little about his situation, other than that he has autism and had played in the band at his previous school. His name was Jake, and his family told me he had played the tuba. So, Young and Idealistic Teacher Girl said "sure, Jake, you can play the tuba" and jumped in with both feet. It turned out that he didn't do much on the tuba other than play really loud, REALLY loud notes that sounded basically like a foghorn. But I also noticed that he was an amazing reader, with an unusual cadence to his speech that I'd really never heard before.

As our Spring Concert approached, inspiration struck me as I searched for ways to include this child in our performance.........knowing that the foghorn sound of Jake's tuba would keep the other 90 kids in the band from being heard as they played. I asked Jake and his family if they would consider allowing him to be our announcer for the concert, introducing each piece and telling a little about it before the band played. They agreed, and the concert was a great success. In retrospect, I'm pretty darn proud of myself for coming up with this, considering that I had had no training or exposure whatsoever to autism before this, and definitely had no educational background in special needs, inclusion, accommodations, etc. But thankfully, I was able to capitalize on Jake's strength with language while allowing him to feel proud and have a sense of accomplishment, while also allowing the other band students to demonstrate their musical skills and what they'd learned during the year.

Fast forward to yesterday. Somehow, as the man approached us in the library, I knew instantly that it was Jake. Don't know how I knew, I just knew. I did the math in my head, and figured he must be in his mid-twenties by now. He kept walking toward us, looking very purposeful, looking at me, walking directly toward me, and I started wondering whether he recognized me too. He put up his hand as if he wanted to do a "high 5", so I put mine up too.........but instead, he placed his hand flat against mine, then laced his fingers in between mine. Then he leaned in, almost like to hug me, but simply put his forehead against mine, then stood back and looked at me. "What's your name?" he asked. In a split-second decision, I chose to say "I'm Jennifer" (he wouldn't have known my married name anyway). "Hi Jennifer", he said, then turned to Ethan and asked the same question. "My name is Ethan, and I really like Sonic the Hedgehog......" was the reply. As Ethan talked, Jake turned and walked away from us, back toward the circulation desk.

I pointed out to Ethan that he should have asked for the young man's name, so he jumped up, ran after him and asked. I couldn't see the two of them, they were behind a tall bookshelf, but I heard them. "What's your name?" Ethan asked, and the reply was "I can't talk now, I'm working". I called to Ethan to come on back over to me, and he seemed confused and maybe a little hurt. I just said something like "he'll talk to you later, he's busy right now, I'm sorry he wasn't able to talk to you more".

We finished our reading, and got up to leave. I saw Jake again, putting books on a shelf, and as a new guest entered the library, he also greeted her with "What's your name?".......but no interlocking fingers, no forehead-to-forehead "embrace". I can only wonder what he was thinking and feeling when he had that moment with me. A memory from long ago of being in my band? A feeling of connection and of being understood by someone who didn't really know what autism was 15 years ago but now lives with it every day and has chosen to make it the focus of her career and future? Who knows, but I liked it. I think I'll have to make sure we go to that library a bit more often.

Sunday, May 23, 2010

Protect Your Children Well

I’ve finally calmed down enough to write about what happened to Jessica about a week and a half ago. For a while now, I have wanted to write something about protecting our family members with disabilities from abuse, but the thoughts just weren’t coming together in my mind. Instead, they were tossing about like the numbered balls in a lotto machine. Little did I know that something would happen to cause all those thoughts to crash together right into my heart.

Jessica spent the first nine years of her life in the foster care system, a system where, unfortunately, physical and sexual abuse are more commonplace than anyone would like to admit. Jessica was born to a very young, non-English speaking mother. At four months of age, Jessica was diagnosed with brain cancer. After the removal of a brain tumor and two years of chemo and radiation, Jessica was left hemiplegic (limited use of the left side of her body – much like a stroke survivor) and significantly cognitively impaired. Beginning in infancy, Jessica’s birthmother was overwhelmed with her care and relinquished her to Social Services. Thus began Jessica’s journey through foster care hell.

I adopted Jessica at age nine. She was confined to a wheelchair, was not toilet trained, could not speak such that anyone could understand her, and she was alternately aggressive and seductive (both results of her abuse). The first few years after the adoption were very, very rough. Jessica was not used to living in a strong supportive family, and probably believed it wouldn’t last. So before we could hurt her (in her mind), she decided to hurt us and do everything she could to disrupt the adoption. But, with lots of medical and psychological/psychiatric interventions, I believe she has finally decided to accept our family and perhaps even to love us.

For the last few years, Jessica has lived in a group home for children with cognitive impairments. The group home is very close to our home, less than 3 miles, and that means we still have daily contact with her. She is, however, moving towards adulthood, and the group home setting is helping to prepare her for life as an adult. For the most part, the group home has been a good environment for her. While there are some things I would change, I admit that my obsessive/compulsive and perfectionist tendencies are not always what are needed. Jessica has maintained the things I worked so hard to teach her and has also learned a lot about getting along with other people. Perhaps because things had been going so well, I was lulled into an almost apathetic attitude. But that all changed the night Jessica was assaulted by another of the group home’s residents.

It was a Sunday night. I had just spoken on the phone to Jessica and all was well. Twenty minutes later, the group home staff called me and said Jessica had been attacked by the home’s newest resident, a young man diagnosed with autism and extreme aggressiveness. The boy had tackled Jessica to the floor, hit her with closed fists, and bitten her twice on the face. I told the staff to take her to the emergency room immediately.

At the emergency room, Jessica was x-rayed, given a tetanus shot, and told to ice, wrap and stay off her left leg for several days. She had to resort to using a wheelchair, and spent most of the rest of her days last week in bed with an icepack on her leg. By Friday, her knee was getting more swollen by the minute, and she had trouble putting any weight on it at all. Another trip to the emergency room ensued, and once again she was x-rayed. No fractures were found, but she was referred to an orthopedic specialist for follow-up.

Through all of this, I tried to stay calm for Jessica, but inside I was seething. The group home staff and management KNEW this boy was aggressive and dangerous. The other parents and I had been complaining for weeks and asking that the boy be moved to a more appropriate, safer setting. But we were ignored – until Jessica got hurt, that is. After calls to Child Protective Services, Licensing, an attorney, and a consultation with the police, the group home did decide to discharge the boy last weekend. Immediately the mood in the house improved. The staff and the residents were calmer and happier. The crying had stopped and the kids who had been like prisoners locked in their bedrooms to stay safe, were once again in the common areas and enjoying each other’s company.

While it is certainly better now, I just don’t know why this had to happen at all. As parents, we trust the caregivers into whose hands we place our family members. Those caregivers say they understand what is needed, say they have the proper training, say their hearts belong to their charges…yet harm still occurs on a regular basis to our most fragile family members. What can parents do? What should society do? How long will we continue to accept substandard treatment for the people in our society that have little or no voice in their destiny? I am embarrassed that as a parent I let this happen to my daughter. I am embarrassed that as human beings we aren’t doing more.

Saturday, May 22, 2010

Anger and Faith

On Wednesday, it will be 6 months since my husband and father of my children has died.  Still very fresh in my mind, although I am starting to feel the various phases of grief. Now, I seem to be hovering in anger.
I was happy to have my anger drive me to get G. into a good grade school.  Anger should be a productive thing, not turned inwards as depression.  It’s all too easy to have control over the situation by using oneself as a punching bag, since others seem too far out of reach.  But knowing that, I won’t go there.

I’m back to work full-time, so more tired than ever.  G’s idiosyncrasies, not to mention those of his older brothers, can sometimes feel overwhelming.  Again, knowing that I cannot, as one person, save the world, I feel free to leave the three boys to themselves to sort it out.  I promise myself dates out with friends; movies on DVD; chocolate; a rich fantasy life.

Shortly after J. died, I had a revelation that I, myself, would like to live.  But it’s only recently that, emerging from the fog of sadness, I need to dedicate myself to also being happy, not just walking through life in a simmering resentment.  That’s going to be a little bit of work as life is indeed a challenge of great magnitude.

My best friend of over 20 years has made it clear she cannot cope with the intensity of my new life; my parents cannot speak the name of the tragedy that’s befallen me, but like some other shallow relationships I have, they are hoping I can get back to “normal” soon.  To a certain degree, death of a spouse sorts out who’s who in your life and I expect there is some normality in the results I’ve seen.  It just hurts.  And hurting makes me angry now.

I was on a corporate video shoot the other day with a bible study class from a southside Chicago black church.  I told the women that I admire people of faith.  They asked me if I had faith in God, which I do not.  I was handed a large packet of information that might guide me in that direction.  However, I think looking at it clearly, I’ll need to develop more faith in myself.  Not only do I need to care for those around me, but taking care of the vessel that is "me" doesn’t come, for some reason, as naturally.  So, I pray, to whom I don’t know, that everyday will come and go without drama and instead, a sense of calm contentment. It sounds easy, but maybe you can pray for me too.

Friday, May 21, 2010

Winging It

When the 21st rolls around each month, I always feel a moment of panic that I have nothing to post on Hopeful Parents. I obsess a bit on crafting something hopeful -- I sit in front of my computer screen and scroll down my bloglist, clicking here and there, looking for inspiration. Then I might click over to Facebook and check my Inbox. That leads me back to my blog and then to the comments and back again -- well --  if you're a writer, you know the temptations. I realize when I do this, allow distraction to sort of set up camp in one part of my brain, that it's actually part of my writing process. Because while I'm clicking and skimming, my brain is actually working, subconsciously. 

And what came up tonight, when I finally clicked over here to create a post was an image of wings. The sort of wings that you see in classical paintings or Greek sculpture. The wings on the backs of the angels in disguise in Wim Wenders' movie Wings of Desire, long and silvery-white transparent, strong enough to fly away from suffering but an appendage nonetheless and a reminder of what is not. And what is.

My daughter Sophie's refractory seizure disorder of unknown origin, her condition, causes her and those who love her immense suffering, and there is really no glory, no blessing in that. When I sit on her bed and watch her seize, when my tears stop and I am able to willfully watch feelings of despair and anger wing it out, I do not feel relief or gratitude. I do not know how to feel. I am, instead, that black figure, head bowed, knowing and not-knowing, winging it.


Elizabeth Aquino is winging it with her family and on her blog, a moon worn as if it had been a shell.

Thursday, May 20, 2010

Some Good

Like most people, when I was in school (mostly college), I dreaded exams. I much preferred those classes in which the final exam was a paper or a project. Because as much as I could prepare for exams – researching, studying, memorizing – it gave me such anxiety knowing that I would have to retrieve all of that information in a limited amount of time and use it to prove that I knew what I was talking about. So much was riding on it, and I usually doubted how well I would do.

Yesterday, we had a very important IEP meeting for my son who has autism and is now in high school. He requires constant assistance to start, work on, and complete assignments at the public school where he is mainstreamed with extensive support. While we are very fortunate to have that support, I do not want his potential limited by a modified diploma. He needs to be taught to work independently, and I don’t see how that could happen in his current placement. We found a school that specializes in teaching ASD students, and he has attended summer camp programs there. I asked his current school to change his IEP to reflect that his academic needs would be better met in the special program.

I prepared for this meeting for two weeks. I researched online, I consulted other special-needs parents, and I printed out e-mails from my son’s special education teacher that I had saved over the course of the school year, mentioning various times that she’d had trouble getting him to do the work, and in which she was asking me for advice. I built a case showing that although I appreciate the support that my son receives, his academic needs were clearly not being met. I practiced my main arguments in my head for days. I threw all of my energy – mental, emotional, and physical – into my preparation. I meditated. I prayed. I tried not to lose sleep. I did everything I could.

But this was one exam that I could not pass. From the moment I sat down at that huge, intimidating table, the district special education coordinator controlled the meeting. She knew how it was going to go. She was diplomatic and acted sincere, but she did her job for the school district. No matter how convincing my arguments, no matter how irrefutable my evidence, no matter how much I stuck to the facts and did not let my emotions surface, she did not waver. It didn’t matter what I’d said or how many e-mails I produced. I felt railroaded. We never had a chance.

I left the building and the tears immediately streamed down my face. I couldn’t even make it out to my car first. I was not completely surprised at the outcome of the meeting, but still, I had hoped. And it was quite a blow. I know that I could hire a special education attorney and take the district to court. I know that we have a good case. But I also know that there’s only so much I can take. I’m supposedly so “strong;” I’ve been told that many times over the years. But I’m not. I’m tired. I’m vulnerable. And I’m not going to fight that fight.

But I will continue to work for what’s best for my son, even if it turns out to be something different than what I’d thought would be best. When I tell Nigel, after I come home, that the district would not approve transferring him to the special school that he wanted to attend, at first he’s angry. “We need to call the authorities!” he proclaims. But after a few minutes, after he feels my calmness and acceptance, and after we talk about our alternatives, he sighs and goes back to the cartoon he had been watching. I walk out to the kitchen to begin making dinner.

I think about the huge changes that my son – that all of us – will be facing very soon as we move seven hundred miles away to be near the special school in Los Angeles. His father lives there, and my two sons have spent the past eight summers there. They’ll go to the local public school, and we’ll just keep working to get Nigel in the one we want him to attend. But I’m open to the possibility that maybe something else will come up in L.A., some other opportunity that will turn out to be even better for him. Something we hadn’t even thought of. After the meeting, walking out to the car, I felt so disappointed in myself because I knew that I wasn’t going to fight the school district. I felt like I was surrendering, giving up. But now I see it differently. It’s not surrender; it’s hope. Hope for something better.

A few minutes later, as if he picked up on my thoughts, Nigel walks through the doorway of the kitchen, stands there for a moment, and says, “Maybe some good will come of it.” It was most likely a line from a movie. But it couldn’t have been better said. I put my arm around his waist and pat his back and tell him Yes, honey. I’m sure of it.


                                Tanya writes TeenAutism.

Wednesday, May 19, 2010

Six Years Ago

Jeremy and I have been married six years today.

If you had told my fresh-faced, pie-in-the-sky twenty-one year old self some of the things that would happen in the next six years, I might have bolted in the opposite direction.  I had no experience with children with special needs, and to tell you the truth, I felt sorry for people with disabilities.  I certainly didn't think that Iwould ever have a child with special needs.  My children would all be intellectually and athletically brilliant, and they would speak multiple languages due to living in so many exotic locales.  Oh, and I would be an English professor and a renowned author by now, not unemployed and still without a graduate degree.  And Jeremy certainly would never be injured; the man was indestructible.  Those sorts of things were what happened to other people so that there was enough material for the Lifetime Movie Network to stay in business. 

I was, in many ways, the kind of person that drives me absolutely bonkers now. 

And so I'm nowhere near where I thought I would be when Jeremy and I made those vows.  But I'm someplace better, as far as I'm concerned.  I've learned that it isn't what you do in life that matters. Things that can be written down on a resume don't really have a whole lot of worth for me anymore-- especially when it comes to my child's accomplishments.  I'm much more concerned with living a satisfied, fulfilling life, and I think the things necessary for that don't require advanced degrees or material goods.  And in those things, things like love and human kindness and having a sense of purpose, I have become rich.  Jeremy and I have an indestructible bond now that I think comes from learning these things together.

I am an incredibly lucky woman married to an extraordinary man.  I'm not going to speculate where we'll be in another six years, because I've learned my lesson there.  But I'm sure it will be somewhere worth going.



You can find Jess over at her blog, Connor's Song.

Tuesday, May 18, 2010


It’s been on the shelf for months now, sitting in a box, silver wrapping, strawberry, frosted with sprinkles. Box held six such packages at one time, but five were eaten early fall by Rojo’s classmates.

Bought the box for them anyway, Rojo doesn’t eat Pop-Tarts. Wanted cool food here when his friends came over. Filled the basement fridge with pop, loaded up on chips and snacks, whatever they’d like, whatever they couldn’t have at their houses, whatever would keep them coming back.

Last few years he’d invite a friend over and the friend would invite another and soon we’d have four or five bouncing on the trampoline, shrieking, eating, running around, throwing basketballs into the hoop. Sometimes a friend would even make the suggestion himself, “Can I come over, Rojo?”

My heart would sing, my camera would come out, my eyes would fill with tears of joy: my boy has friends.

Boys are all in seventh grade now, some well into puberty, men really. Manly bodies imprisoning seventh grade maturity. It’s normal. It’s natural. It’s to be expected. It has swept me at the knees.

Nobody is coming back for that Pop-Tart. I have known it for a long time and couldn’t bear to throw it away. I hoped I was wrong. I hoped Rojo would ask to have friends over. I hoped friends would invite themselves.

Yesterday I grabbed it from the box, tossed it in the trash, collapsed the cardboard that had housed my hope, and put it in the bag to get recycled.



Monday, May 17, 2010

right on time

ed note .. It's after 7pm as I hit publish on this post. Until a couple of hours ago when I received an e-mail from a friend wondering why she hadn't seen me on Hopeful Parents today, I'd managed to completely and utterly forget the date. Doh! I had nothing ready for prime time, but I couldn't live with falling down on the job. 

Therefore, what follows is the mostly raw, largely unedited version of what was meant to be tomorrow's post on Diary of a Mom. I hope you'll forgive me if it's a bit rough. Like life, my writing's not always pretty, but it's real. 



When I was thirteen, I broke my leg while doing gymnastics. My mom had brought me to practice that night, just as she always did, and my dad was due to come three hours later for pick-up time, just as he always was. I broke my leg right in the middle of practice.

As soon as I felt the flat of my shin crack against the balance beam, I knew. This wasn't a run-of-the-mill, put some ice on it and quit your belly achin' injury. Something was really wrong.

As my coach lifted my head, our team trainer created a foam splint and rigged up some support under my leg. As the trainer tried to calm me down, I yelled to the nearest gymnast.

"Darci, go get my dad!' Everyone looked at me sympathetically. They assumed I was in shock as I obviously wasn't making sense. It was my coach who spoke.

"Honey, your dad's not here. He won't be for a couple of hours. We're going to try your house and see if we can reach him."

I understood why they thought I was losing it, but I simply knew I was right.

"Darci, please just go out into the waiting area and get my dad, OK?"

"Just go," I added emphatically, "He'll be there."

Moments later, much to the surprise of everyone but the girl with the broken leg, Darci walked back across the floor with my dad.

He never could explain why he was there. He just was. Love - particularly the love of a parent for a child who is hurting - sometimes defies all reason.

Sometimes, it just shows up when you need it.


Last night, we went out to dinner as a family. Or at least we tried. Halfway through our meal, Brooke and I pulled the ripcord. Despite the familiarity of our favorite (and only) haunt, despite the usually soothing music coming through her headphones, despite the presence of our favorite waitress, despite the crayons and a favorite meal, she simply couldn't handle it.

The restaurant was busier than usual and much to our dismay, was filled with young children. One little boy within spitting distance of our table had a cough. Fight it as she might, Brooke finally couldn't handle it anymore. I watched her little body tense. I watched her face contort into a pained cry. I watched helplessly as she screamed a blood-curdling shriek. I brought her onto my lap and tried to soothe her. I gave her the long, slow squeezes that sometimes help. I rubbed her back. I stage-whispered in her ear, just loudly enough to be heard through her headphones.

She shrieked again and looked to me for help. "I WANT TO GO WALK!" she yelled loudly enough to be heard three states to the south. And so we walked.

Luau and Katie stayed behind to finish their dinners. Winnie packed up my meal along with Brooke's and gave them to Luau on their way out. I came home and wrote the following in my Facebook status:

Just as over time the ocean's waves insidiously claim its shore, so it is that watching one's child continually struggle slowly erodes the spirit of the parent.

Yeah, it's ludicrously poetic. It's that or throw something. 


This afternoon, I found an e-mail from my dad waiting in my inbox. Its tag line read, What Love means to a child. The body of the e-mail explained that what followed were children's answers to the question, What is love? I read through the quotes and, not surprisingly, got teary at a few, like .. 

'When my grandmother got arthritis, she couldn't bend over and paint her toenails anymore. So my grandfather does it for her all the time, even when his hands got arthritis too. That's love.' ~ Rebecca- age 8

and ..

'Love is what's in the room with you at Christmas if you stop opening presents and listen.' ~ Bobby - age 7

I laughed at others, like .. 

'I know my older sister loves me because she gives me all her old clothes and has to go out and buy new ones.' ~ Lauren - age 4

and ..

'Love is when my mommy makes coffee for my daddy and she takes a sip before giving it to him, to make sure the taste is OK.' ~ Danny - age 7

But it was the story at the end of the e-mail that did me in. And oddly enough, it brought me right back to that day at the gym - the day that without knowing why, my dad showed up - almost two hours early and right on time.

The best quote of all came from a four year-old child whose next door neighbor was an elderly gentleman who had recently lost his wife. Upon seeing the man cry, the little boy went into the old gentleman's yard, climbed onto his lap, and just sat there. When his Mother asked what he had said to the neighbor, the little boy said, 'Nothing, I just helped him cry.'


Love can't always make things better. Or even different. I can't fix the world for my little girl any more than my dad could unbreak my leg.

I can't keep her demons at bay. I can't find a way to convince her nervous system that she isn't under attack when a little boy coughs.

And it hurts like hell when I can't make it right.

But I swear I could hear my dad's voice in the e-mail. Maybe just because after all these years, I know what he'd say.

You walked with her, Jessie. You held her hand and rubbed her back, You took her AWAY. You were THERE.

You helped her cry. 

My dad isn't on Facebook. He couldn't have seen my status. I haven't spoken to him in a few days. He had no way to know.

But he did. He showed up right on time.

He was there.  

And simply by being there, he reminded me that sometimes that's enough.


Jess can be found at Diary of a Mom

Sunday, May 16, 2010

Standard Needs

Others ask, sometimes rather caustically, why I refrain from using the term “special needs” in reference to my daughter.  Rather, when a nod to her diagnosis is required for context, I use expressions like – my daughter with differences, or my girl who communicates alternatively and who is intellectually original, etc.  I am accused of being too politically correct.  Another parent informed me that my choice of words is false diplomacy, as though I am gingerly engaging the enemy (the dreaded ‘one not personally impacted by disability’) as a means to an end.  It has also been suggested that my choice of words is too vague to describe my daughter, that others cannot get a clear picture.  But I don’t attempt to draw a clear picture with my words.  Addie will demonstrate who she is herself, if she chooses to.  And does ‘special needs’ give a clear picture of anyone?  Does it sum a child up?   And is it really her needs that make her diverse?

I took my older daughter to hear Keith Jones speak a few months ago.  Cate is 10 years old, but had enough desire to hear Mr. Jones to withstand the 40 minute car ride each way, locked in with 3 mothers yammering about IEPs, accommodations and hippotherapy.  My daughter is a big fan of the film Including Samuel in which Mr. Jones is featured, often quoting him in conversations with kids and adults alike, as she furthers her own agenda for her sister and the meaningful inclusion of any and all people with differences.

My fifth grader - one of the 3 children in an auditorium full of adults - listened and laughed, for Mr. Jones is as uproariously witty as he is enlightening on the subject of disability rights, revolution and social justice.  At the end my brave girl raised her dimpled child’s hand.  Her voice was paradoxically both timid and bold as she thoughtfully inquired, “Why do you think, Keith, that it’s taking the world so long to understand that everybody is kind of the same?  We’re all just people, we all have the same needs.  Why is it taking so long to get it?”  The way she asked, it was clear she expected new understanding that she could act on, an answer that began with the word “Because….”

Mr. Jones permanent smile straightened for a split second as he replied “Out of the mouths of babes.”

Of course, I could not leave it and I asked my daughter later about her question.  She elaborated further that since everybody’s needs are special to them, nobody’s needs are really special.  If we keep thinking somebody has special and mysterious needs, we think we cannot give that person their complicated needs, so we don't even try.  She firmly attested that we all need precisely the same things.  We worked out a list together - thinking of her sister, thinking of ourselves, thinking of others - to test her theory.    On the list of needs we all have: a full belly, shelter, health, safety, love, meaningful contributions, challenge, somebody to talk to and trust, and to do a few things that make you proud.  Some people can get these things in traditional ways.  For others, different tools are used:  feeding tubes, medical intervention, assistive technology, creative teaching, therapies, facilitated social opportunities to practice,  open-minded and willing employers…

Cate decided, yes indeed.  The means may differ, but the needs themselves are pretty standard for all of us.  

I do not use the term "special needs" for no other reason than because my children and my experience have rendered it meaningless.

Saturday, May 15, 2010

The Autism Path

I feel that when I got my son Jack's autism diagnosis, it was as if I had been given directions to a trail head that started us down a path. The path was different than the one I'd planned on and this path was rockier than the one I left behind, but still, it was a path. Walking along this autism path was better than milling around aimlessly in a meadow, unable to find a trail head of any sort.

When I think of Jack's autism and where it takes us, I can actually see this path in my mind. It is made up of dirt and rocks and it winds through and up a mountain pass. I'm walking it with Jack, and my other children walk on either side of me. Sometimes the rocks in our path cause only Jack to stumble, but sometimes they are spread out so all of us trip and struggle.

Here's the thing about this difficult autism path though: It's beautiful. There are trees and ponds to the side, and every once in a while we see a deer or a squirrel. Yes, the terrain is bumpy, but the setting is gorgeous. This is how I see my life with Jack. Parenting a special needs child brings so much love, joy, learning, and amazement. Some days, when we trip and fall, we see a beautiful flower under a rock that we wouldn't have seen had we not stumbled.

Often times our children with autism forge straight ahead through the hardest section of the trail, but sometimes they notice that there is an easier way around. Every time they take that easier way, every time they learn that they should look for the possibility of an easier way, the sky seems to get a little brighter.

We're not alone on our path either. There are special needs families strewn all over this trail, walking with us. Sometimes we hold hands as we struggle up a steep incline and sometimes we catch each other as we slide down a scree-littered down-slope.

No matter where our paths are taking us—and they stretch all over the mountain—we all started from the same trail head, more or less. We all saw that signpost with the words, "Diagnosis: Autism" on it.

Some of us set off with purpose in our hearts and our heads held high. Some of us feared the heavy trees and that initial almost-vertical climb. Some of us tried to turn around to find a different trail. Many of us had hope. And we needed it too, because that first couple of miles? They are a bitch. The terrain is unpleasant and the overhanging trees block the view. There is so much to learn about how to climb and we often forget to look for the bright spots hidden among the boulders.

But we keep going because someone a little bit ahead holds out a hand, or we see a beautiful rock that a previous passer by dropped for us on the ground. We keep going, because our child keeps going, and he needs us to keep up. He needs us to remember that even when he is struggling up that path on unsteady legs, he is still the same child who days ago was frolicking in the meadow before someone said "autism" and pointed him toward this trail.

There are people who are much farther ahead of us on this path. Through the special needs parenting grapevine, word comes back that there is a really steep hike coming up. The word warns us to work hard and keep trying but don't despair, because there is a lovely flat section after you reach the top, and oh my God, you won't believe the view from up there.

These paths wind all over the mountain of autism, intersecting, diverging, and running parallel to each other. There are times when I am on my path, picking my way around trees when I can see my special needs friends on their paths below and above me. Some of them are struggling, some of them are running, and, look, that guy there is sitting down nursing a bruised knee.

But we all get up and we keep walking.

Sometimes the path is dark and scary. And sometimes its beauty takes our breath away. Sometimes we gaze at the path of neurotypicality on the valley floor and wish for those easy slopes and the way all of those paths run close together, providing easy company. There are some beautiful plants and geographic formations down there, that's for sure. We forget that there are hazards down there as well, that they are merely different from our own.

There are days that we don't envy those valley-floor paths, however. Those days we realize that those trails don't wind around high-altitude lakes, stunning in their beauty. Those paths don't force their walkers to fight through a bramble of thorns, which means their travelers don't get to feel the surge of pride and victory when they emerge back into the sunlight. We don't get to experience the same beauty as those walking on the valley floor, but our scenery is gorgeous in its own right.

Everyone's path is hard. Everyone has to struggle up and down the trail on which we have embarked. We struggle over the uneven ground and hope that around the bend there is a nice flat section or a tree stump, upon which we can take a rest and enjoy being with our fellow travelers.

But after we sit, after we rest, we stand up and we keep walking. We continue to find ways to help our kids avoid the most difficult pitfalls and we keep on in our search for that small, beautiful flower or the overwhelming gorgeous view.

We're tired, but we keep going, because we get to be with our children and they make the walk oh so worthwhile.

This post was previously published at Jean's personal blog, Stimeyland, and in her Washington Times Communities column, Autism Unexpected, but Jean decided to repost it here because she likes it and also because she has one birthday, two birthday parties with a combined total of 30 guests, and an IEP meeting to deal with in the next eight days. Plus she's going to buy mice for her kids. Please wish her luck. Or for her to come to her senses.

Friday, May 14, 2010


I learned this word the other day and I've fallen in love with it. Sometimes words can create in your mind a perfect reflection of how a feeling feels or perfectly reflects the thing as it should be. It's as if the mental image, the verbal sound and the abstract concept marry. There are only a few words that I can think of that do this for me.

There's the use of the word elegance or elegant as a mathematical or scientific construct, the simplest and most perfect path... But I especially like to think of it in terms of things that are specifically not mathematical or scientific. I've worked with my son's school to create the most elegant behavior plan, for example. Not meaning that it in anyway LOOKS good or is witty and urbane, but that it is logical, sequential and concise.

I love the use of the word masturbatory as a synonym for self-congratulatory. As in, the Oscars are a masturbatory exercise.

Mastication. Why chew when you can masticate?

Supine. Oh, the lovely concept of being supine. Especially when one might consider being supine beneath a dirty, hot James "Sawyer" Ford. Ha ha.

Stochasticity. This word has blown my mind all week. It is a really fancy (and probably inelegant) way of expressing the concept of randomness. It's not just the way that the word sounds, or that it's a big word, but the concept it decodes is what blows me away the most. Randomness. But not just randomness, it's also expressing an idea of likelihood of something existing in an ever random, or stochastic, universe.

In college, I backpacked around Europe with my boyfriend for two weeks. Our third or fourth day out we arrived in Paris. We were dirt poor and on a very tight budget, so we walked miles and miles and miles and miles every day, saving money that would otherwise go to taxis or metro passes. Walking the city, like any city, we'd be directed to certain sides of the street or through temporary tunnels aside buildings undergoing renovations, and signs directing us where to go would say "PIETONS" with an arrow pointing the direction we were to follow. My boyfriend and I had been good little French class kids in high school and had learned the song, Chevaliers sur la Table Ronde, and for whatever reason, the song was massively stuck in our heads on our travels throughout France. Coupled with the PIETONS signs, the words to the Chevaliers song "Gouton voir, OUI OUI OUI; Gouton voir, NON NON NON" quickly became PIETONS OUI OUI OUI, PIETONS NON NON NON! and the whole song played out as a inside joke for the course of a day.

Of course, that was nearing 15 years ago in my life. But when I go for a walk, and I hit a certain clip in my stride, PIETONS, OUI OUI OUI! PIETONS, NON NON NON! flashes to my mind... and this happens ALL THE TIME. This particular boyfriend was my high school sweetheart and college boyfriend for over three years. We spent our waking hours together for most of those years, and what is the enduring thing that makes him pop in my head? Of all of our conversations, experiences together, sweet nothings? Pietons. Oui.

Stochasticity. What of probability and randomness in our lives? What about my life today? How much of my life can I personally account for and how much of it is just random? My son was the lucky recipient of a diagnosis that is given to 1:110 children these days. If I had effectively "mated" with his father an hour later than we actually did, would he have autism? I, who have never won more than $20 in a slot machine, who has brown hair and love for odd words and this certain color of green, I who am the sum of my thoughts and atoms and freckles and bad habits... I, who make choices that constantly change the sum of possibilities that lay before me... how is it that this is where I am?

And all of this lovely musing is in this fabulous word, this concept that I can barely grasp, stochasticity.

Wednesday, May 12, 2010

One More Reason To Be Thankful For Great Girlfriends

I know that for many of you who read this blog support from your family and friends is very important. Did you know that female friendships can actually help you to live a longer, healthier, and more vital life? Yes it's true! UCLA did a landmark study which shows how having close female friends and family can decrease your stress levels and boost your levels of oxytocin. Below are some excerpts about this study from an article by Gale Berkowitz.

A landmark UCLA study suggests friendships between women are special. They shape who we are and who we are yet to be. They soothe our tumultuous inner world, fill the emotional gaps in our marriage, and help us remember who we really are.

By the way, they may do even more.
Scientists now suspect that hanging out with our friends can actually counteract the kind of stomach-quivering stress most of us experience on a daily basis. A landmark UCLA study suggests that women respond to stress with a cascade of brain chemicals that cause us to make and maintain friendships with other women. It's a stunning find that has turned five decades of stress research---most of it on men---upside down."

Now the researchers suspect that women have a larger behavioral repertoire than just fight or flight; In fact, says Dr. Klein, it seems that when the hormone oxytocin is release as part of the stress responses in a woman, it buffers the fight or flight response and encourages her to tend children and gather with other women instead. When she actually engages in this tending or befriending, studies suggest that more oxytocin is released, which further counters stress and produces a calming effect. This calming response does not occur in men, says Dr. Klein, because testosterone---which men produce in high levels when they're under stress---seems to reduce the effects of oxytocin. Estrogen, she adds, seems to enhance it."

In one study, for example, researchers found that people who had no friends increased their risk of death over a 6-month period. In another study, those who had the most friends over a 9-year period cut their risk of death by more than 60%.

Friends are also helping us live better. The famed Nurses' Health Study from Harvard Medical School found that the more friends women had, the less likely they were to develop physical impairments as they aged, and the more likely they were to be leading a joyful life. In fact, the results were so significant, the researchers concluded, that not having close friends or confidants was as detrimental to your health as smoking or carrying extra weight."

Find out more about how your friends can improve your health and happiness by clicking here to read the rest of the article.

Do you need any more reasons? Give one of your good girlfriends a call and start improving your life today.

Connect with Other Parents

Hi Everyone,

We've had some new activity in the forum at the Hopeful Parents Community recently. If you're into discussion boards, you may want to hop on over and say hello. Several people have given introductions but haven't had much in the way of replies. Let's make them feel welcome. You may just find someone there with whom you've got lots in common.


How Family Centered Care Changed Our Lives.

Kathleen Sebelius, our Secretary of Health and Human Services, recently paid our children's hospital a visit. At the end of the day she made the observation that "family centered care" is something everyone talks about, but that our hospital was clearly *doing* it and becoming a leader in that arena. I'm talking about Cincinnati Children's in Cincinnati, Ohio.

She is absolutely right. We moved here 2 years ago specifically for this hospital, which is routinely rated in the top 5 in the country. Initially our decision was based on the simple fact that they had the best audiology team in our state, but as our son's list of issues expanded, so did our awareness of many other clinics and divisions in the hospital. I'm not saying that every single encounter we've had has been positive, but what I love about this place is the fact that they welcome feedback and take steps to correct problems. 

I've been volunteering on a family advisory council for a few months and at a recent meeting we were asked for input regarding a training program for the customer service representatives (CSR's). These are the people that greet parents at registration desks across the hospital. They're usually your first point of contact, so they need to give a positive impression. I shared a story about once having a tense interaction because my autistic son was jumping across the desk and throwing things while I was trying to register for an appointment. I suggested they get sensitivity training to be prepared for patients and families who require an "out of the box" approach to registration. Signing in and waiting for the appointment is usually tougher for us than the actual visit, so we really need understanding and support in the waiting area.

Within a week a committee was formed around my suggestion and I was asked to participate in crafting the training. We're now working with management, OT's, SLP's, Child Life Specialists, and parents to devise a workshop for the CSR's that will roll out in July. 

Talk about being responsive to family concerns! I'm just floored by this. 

Our hospital also has an Adaptive Care Team that works with families and children that have developmental disabilities. They provide extra support during a range of visits across the hospital. The Child Life Specialists initiated our plan of care which is basically a fact sheet on my son. It summarizes his sensory issues, what sets him off vs. what he finds calming, what toys and videos he likes to watch, etc. We were recently in the OR for an ear tube placement and when they took him to recovery, he was put into his own little room with his favorite video playing on a t.v. and 3 adults were there to help keep him calm until I arrived. Normally the kids are wheeled into a very busy and crowded PACU area where they are only separated by a curtain, there are no t.v.'s and you only get one nurse. When they saw his plan of care that the adaptive care team had written, they modified his recovery and as a result we experienced less trauma and got out of there twice as fast. 

This may not sound like a big deal to some people, but it completely changed our perception of hospital experiences. Since we're frequent flyers at our children's hospital, it has made a really positive impact on our lives. Most hospitals have family advocates who are there to assist us, so if you are a parent who struggles every time you take your child in for an appointment or procedure, ask these people to help. See if they can line up a child life specialist for your visit. Ask them what they can do to make your experience and that of your child more manageable. That's what they're there for. 

Tuesday, May 11, 2010

Hobbies and a Hierarchy of Needs

As summer approaches, I’ve been thinking about hobbies. My academic year ends next week, and while I have a number of writing projects to work on and grand plans to play with my daughters as the weather gets warmer, I don’t have any specific relaxing diversions on the horizons.  I’d like to have more pastimes other than fretting over my daughter’s health and her twin sister’s well-being. I keep holding the possibility that my sweetie and I can create more fun and leisure in our lives and try to move beyond the mere survival mode in which we seem to so frequently reside.

I have lots of friends, and my friends have lots of hobbies: collecting Pez dispensers, making art from old license plates, paragliding, canoeing, gardening, wood working, biking, backcountry skiing, traveling to far away places. I get great pleasure from my friends’ hobbies as they share their tales with me.   I don’t feel as if I have any true hobbies.  I’m thinking of the type of hobbies that transport oneself into another realm of reality—the immersion into a mystery novel or an art project or the pursuit of the rare nesting bird where one’s immediate needs are somehow transcended.  As parents with a child with a serious disability/illness, having a hobby feels like a far away luxury. 

The last two weeks our family has had to deal with a very sneezy, wheezy little Sylvie.  Given the condition of Sylvie’s muscular structure and the fragility of her lungs, any little cold has the potential to take on monumental proportions. She seems to be recovering—this time.  Yet most likely, it will be some type of respiratory infection that will eventually be her demise.

In addition to contemplating what hobbies I would most like to take up, I’ve also been thinking about psychologist Abraham Maslow.  Maslow was interested in what motivates people and how we live within a hierarchy of needs.  Many social scientists, at one point or another, return to Maslow’s work as a way to understand human behavior.  Basically Maslow has argued that until one’s basic needs are met (e.g. physiological and safety needs), the “higher order” needs of love, affection, belonging and self-actualization are not able to be fully satisfied. As parents of a child who cannot feed or change herself, we are often dealing with the very basic requirements of nutrition, excrement, and oxygen.  Additionally, worrying about finding care providers who can handle Sylvie’s basic needs and assure us that she is free from harm is a very real concern for us—thus limiting how far we venture on a date or a hike or a bike ride without her. My sweetie and I try hard to make a safe family environment where our daughters feel secure and nurtured, but there is little time for us to work on self-actualization or have any hobbies.  I know I am not alone in my limited time or lack of solitude—most parents of young children I know struggle with this.  In fact, many people in large parts of the world struggle to move beyond mere survival mode.  But still, I’m hankering for some good hobby so I can rejuvenate myself.     

There are some hobbies I could do without.  I recently came upon the Facebook page of a high profile mom who listed as some of her personal interests as “hugging handicapped/special needs children - and their parents.”  This “hobby” has a high ICK factor for me—I don’t want me or my daughter or any other kid who is living with a disability to be a leisure pursuit for anyone. And I sure don’t want this woman’s hugs simply because my kid’s biochemistry is all messed up! However well intentioned this mother may be, it just seemed creepy that those of us who deal with physical/cognitive disabilities would be a source of charitable amusement for someone.  Yuck!  I think I’ll pursue some other hobby like restructuring my backyard, or cultivating a flower bed, or hiking more mountains thank you very much! 


Kirsten Isgro is a professor of Communication Studies at the State University of New York and the mother of 4-year old twin girls. She is eager to hear about your favorite hobbies, so long as they don’t include knitting or pitying her daughter or her family. 

Regular Moms Versus Special Needs Moms

Regular moms tell their kids to wake up and get dressed in the morning.  And they do it.
Special needs moms put on battle gear to get our kids ready to start their day. 

Regular moms ask their kids if they brushed their teeth. 
Special needs moms prompt, “Brush your top teeth.  Brush your bottom teeth.  Did you get the sides?  Open your mouth.  My God, give me that toothbrush!  You’ve left half your meal in there!”

Regular moms wave goodbye as their kids run off to catch the school bus.
Special needs moms get awesome door-to-door bus service for their child.

Regular moms know the names of all their friends.
Special needs moms know most of their friends by their username.

Regular moms judge other moms when kids have tantrums in stores.
Special needs moms say to themselves, “Hmm, I wonder which disability he has?”

Regular moms complain about driving their kids to sports and recreation classes.
Special needs mom grin and bear the weekly trips to tutors, doctors and therapists.

Regular moms’ kids have a teacher.
Special needs moms’ kids have a team.

Regular moms talk about accomplishments.
Special needs moms talk about skills, as in play skills, conversation skills, life skills, social skills and vocational skills.

Regular moms relax with their kids during the summer.
Special needs moms start their second job as home teachers, therapists and skills coaches.

Regular moms think accommodations refer to hotels.
Special needs moms have memorized the top 20 accommodations for their child.

Regular moms hope their child finds a good career.
Special needs moms are hopeful someone gives our child the chance to work.

Regular moms soak in the tub when they want to unwind.
Special needs moms consider a bathroom break a luxury.

Regular moms enjoy reading the latest best selling book.
Special needs moms should receive an honorary degree for all the disability books they've read.

Regular moms go out for dinner and a movie with their husbands every month.
Special needs moms have a date night with their husbands every…wait, what decade is this?

Regular moms complain their kids won’t eat their vegetables.
Special needs moms are so desperate we consider chicken nuggets to be a legitimate meat product and throw in ketchup as a vegetable.

Regular moms’ kids go to play groups.
Special needs moms’ kids go to therapy groups. 

Regular moms meet for a ladies night out.
Special needs moms get together at support groups and forums.

Regular moms have medical claim forms that fit in one file folder.
Special needs moms will tell you a small forest was cut down so we could receive our claims.

Regular moms think OT means overtime.
Special needs moms know more acronyms than a NASA engineer.

Regular moms have time to cook a full dinner every evening.
Special needs moms will never admit how many times we've picked up fast food.

Regular moms complain their husbands sit on the couch and watch TV while they do all the work.
Special needs moms...well how about that?  Some things do stay the same!
(Just kidding dads, we know you do your part!)

Regular moms worry about fat and sugar in their children's diets.
Special needs moms worry about gluten, casein, oxalates and have a working knowledge of (FDA approved) food additives.

Regular dads spend a week teaching their sons to pee in the potty and maybe a month teaching them to poop.
Special needs dads keep trying, sometimes for several years.
--From Michael

Regular moms look forward to an "empty nest."
Special needs moms wonder who will take care of their kids after they're gone.
--From Elizabeth

Regular moms have the numbers of their friends programmed into their cell phones.
Special needs moms have the numbers of their child's specialists programmed in theirs.
--From Kate

Regular moms’ kids are mildly afraid of the dentist.
Special needs moms’ kids are so terrified, 9 out of 10 dentists will ask them not to come back.
From Judy

Regular moms get annoyed when their child won't stop talking.
Special needs moms would do anything to hear their child utter one word, 'Mom'.
--From Elizabeth

Regular moms cringe when their daughter misses a step or gets confused during a ballet recital.
Special needs moms cry a special kind of tears as their child painstakingly holds up one foot while leaning on a chair and says, “Look, mommy, I’m doing ballet.”
--From Kimberly

Regular moms rely on children's vitamins and common cold medicines to meet their kids health needs.
Special needs moms are busy being medical detectives using medicines and supplements a pharmacist can barely pronounce.
--From Melanie

Regular moms budget for new clothes, a new size every season for their children.
Special needs moms know the anguish of three winters in the same size.
--From Heather

Regular moms drive their kids to the pediatrician for their annual exam.
Special needs moms arrange for an ambulance to transport their child to their annual 12 specialist event that lasts a week at children's hospital.
--From Elizabeth 

Regular mums complain their kids are under their feet during the summer holidays.
Special needs mums hope to find a school where their child can stay for longer than a term (semester) before being thrown out.
--From Laurie

Regular moms send Christmas cards to their friends and family.
Special needs moms send Christmas cards to friends, family AND the medical team and specialists that helps take care of their child.
--From Kate

Regular moms show up to their kids' activities.
Special needs moms get to work prompting and herding their child in each activity.
--From Ann

Regular moms rarely get calls from their child's teacher.
Special needs moms expect it's a call from the school everytime the phone rings.
--From Anonymous

Regular moms worry about their child being picked on in school.
Special needs moms know their child will be discriminated against their entire lives.
--From Elizabeth

Regular moms are on a first name basis with other moms in their neighborhood.
Special needs moms are on a first name basis with their child's pediatrician, neurosurgeon, gastroenterologist and other specialists.
--From Kate

Regular moms bring their kids to the doctor without any advance preparation.
Special needs moms have prepped their child all week with books and practice getting a shot.  They come in armed with favorite CDs and children’s books and it’s still a traumatic experience for both child and mom.
--From Judy

Regular moms forward funny mom e-mails to each other.
Special needs moms can only send this list to other special needs moms--regular moms would be offended if we suggest they don't understand what we deal with everyday.

Regular moms occasionally worry about one or two allergies.
Special needs moms have memorized the top 75 allergens, preservatives, chemical additives and toxins.
--From Michael

Regular moms hunt for the best clothes bargains and trendy styles.
Special needs moms hunt for that one manufacturer who makes clothes that fit our child's fine motor or sensory needs.

Regular moms' stress levels raise from a 3 to a 10 if their child needs stitches or tubes in their ears.
Special needs moms' daily stress levels are already at an 8 so stitches or tubes in ears can actually be a step down from the day to day stresses.
--From Kate

Regular moms look forward to their children going off to college.
Special needs moms do not look forward to deciding whether or not to put their children in state run homes they become adults.
--From Elizabeth

Regular moms know their child will eventually pick up reading in their own way.
Special needs moms must tackle reading skills with a sense of urgency and with all the research resources they can muster.
--From Jeri

Regular moms are asked to chaperone for field trips.
Special needs moms are required to be there just so their child can go on the field trip.

Regular moms put their children to bed and get a good night's sleep.
Special needs moms monitor CPAP machines and masks, Apnea monitors, suction tracheotomy tubes, oxygen tanks, reset pulse oximeter alarms, and feed their children through feeding tubes through the night.
--From Elizabeth

Regular moms try to get their child toilet trained by preschool.
Special needs moms try to get their child toilet trained by high school.
--From Nancy

Regular moms take their child's developmental milestones for granted.
Special needs moms realize what a miracle the human body is to be able to do what it does after spending hundreds of hours teaching our kids to roll over, crawl, walk, eat, play, etc.
--From Kate

Regular moms agonize with their child if he or she doesn’t make the elite soccer team.
Special needs moms would cry tears of joy to see their child play soccer, just once.
--From Kimberly

Regular moms ask the local babysitter to watch the kids on date night.
Special needs moms call a nursing agency when they haveto leave her child home for emergencies only.
--From Elizabeth


- - - - -

Reprinted with permission from One Place for Special Needs. The first several entries were written by Dawn who runs One Place for Special Needs, a national disability resource that lets you find local and online resources, events and even other families in your neighborhood plus over 3,000 online resources! Stay awhile and check out the site. She is also moderator of Autism Community Connection, a Yahoo group for families in Illinois. Dawn has two awesome kids, a supportive husband (honestly!) and strives for a day when communities can effectively reach out to support all special needs.

Thanks, Dawn, for sharing...and growing!...this list with us!!

You can find Dawn's original post here.

Monday, May 10, 2010

Exchange Student and Summer Camp

Our French exchange student is now back in France. You have probably heard how the Icelandic volcano disrupted flights – what you may not know is that it prevented our students from going back home to France when they were supposed to go. They were very happy (and so were we) for the delay! Zoe became more like a member of our family, rather than a guest. The news media even got involved: Zoe, another student and their chaperones were interviewed on local TV about their experiences here, and their difficulty in getting a flight home. Five days after they were supposed to leave, they were back in the south of France, and all is well.

Having an exchange student was a wonderful experience for us, and I am thankful that we had her to stay. One important thing that happened was that I moved through the grief that arose from having a 15-year old girl in the house, and was simply able to enjoy Zoe’s company. I took her to get a pedicure, and shopping for clothes; we went grocery shopping, and she selected the food for her last dinner at our house (she chose filet mignon).

There is only one Katie, and no one will ever take her place, or fill the hole she left in my life. But I felt as if she was blessing this exchange with Zoe, and I’m thankful for it.

As we are nearing the end of the school year, thoughts of summer camp arise – and volunteering at the American Cancer Society’s Camp Goodtimes West is on my mind. Our children attended this camp after Katie recovered from her surgery, before she relapsed. It was six days of fun and frolicking, with cancer firmly in the BACKGROUND. Every child at camp was a patient, a former patient in remission, or the sibling of a patient; I highly recommend the experience for anyone you know who might fall into one of these categories. Camp provides a week of openness and freedom from hovering parents, and yet it’s safe, with nurses and an oncologist right on site. Carnival, swimming, bicycles, a cruise, sing-alongs, campfires, skits, dancing, laughter, friendship and memories are all part of the program, and cancer (and the medical equipment that goes with it) does not stop any of the fun. Katie did not want to go to camp, but after she got there, she loved it so much that she asked us to scatter her ashes at camp. I will be helping on the cruise this summer, as I did last summer.

Here is a video of an interview of David and me, made in 2007, by our dear friend and photographer, Paul Dudley. Paul is the reason that we know about Camp Goodtimes, since he’s been volunteering for them for 20+ years. I couldn’t have done the interview with anyone else. Paul KNOWS us, knew Katie, knows Camp Goodtimes, and knows kids with cancer. He gets it.

If you know a bereaved child, there is another camp that could be a blessing: Camp Erin. Jamie Moyer and his wife, Karen, started The Moyer Foundation 10 years ago to help children in distress. They founded Camp Erin in memory of their young friend Erin, who had cancer. I spoke at a fundraiser for the foundation last week, and had the privilege of meeting Erin’s parents. Camp Erin has 36 camps in 23 states, and one in Canada. If you would like to learn more about Camp Goodtimes or Camp Erin, just click on the links.

There are many summer camps designed especially for kids with special needs. If you are looking for one, I hope you will consult your doctor or local children’s hospital for suggestions.


Karen Gerstenberger is the mother of David and Katie, and the president of Katie’s Comforters Guild at Seattle Children’s Hospital. Her blog is The guild’s blog is