Sunday, February 28, 2010

Trying to lift the veil

It's the 28th of the month, my day to post for this wonderful site. I feel like a fraud writing to you today. Hopeful parent? Not. For the last few months, I've been struggling with my first major depression. I feel such a sense of utter inadequacy as a parent. I try to tell myself that I'm not in my right mind, that this self-flagellation is undeserved and counterproductive. Deep inside me, however, I fear that if I let myself off the hook, I will just continue to fail my children and their complex, overwhelming, unrelenting needs. I haven't written on my own blog in weeks. I feel like I have absolutely nothing to offer.

I'm on my second antidepressant (the first caused symptoms of extreme anxiety), and at times I do feel a slight lifting of the veil that has darkened my view of the world. I try to believe that's a good thing, that I deserve to feel better, need to feel better, want to feel better. But I don't believe it, and I almost welcome each new wave of sadness and self-hatred.

In the meantime, I keep taking my med every day, even though I don't think I am worthy of feeling better. I see my therapist. I do my best to take care of my boys, and I haven't missed a single meeting with their teachers, therapists, doctors or case managers.

I hope next month, I have something better to say.

Saturday, February 27, 2010


Raising A is an ongoing lesson in 20/20 hindsight. I know we can only make the best decision with the information we have at the time, but I'm human and a mom, so I beat myself up on a regular basis. Was changing schools two years ago the right thing to do? Would his current problems not be an issue if we hadn't? Did we screw up his potty training several years ago and that's why he has such bathroom challenges?

Does he really have ADHD? Did we just give him meds for three years, possibly slowing or stunting his growth, and it may not have been necessary?

That one is the question that haunts me. We pulled A from all ADHD meds right before Christmas for a variety of reasons, and after consultation with his doctor, decided to keep him off. His focus, while not perfect, wasn't that much different from any other third grade boy. We have moved him to a gluten-free/dairy-free diet, with minimal preservatives, insisted on several school accommodations, and have reduced his already small amount of screen time even further.

And we've seen results. We've seen a maturity start to bloom that we knew was there but was smothered by...something. It's that something that haunts me. Was it really ADHD? At least two doctors confirmed it was, teachers noticed differences when he was on meds vs. off...but really?

The confusion lies in how ADHD can mimic other diagnoses. In our house, the other diagnosis isn't really a diagnosis, but a kissing cousin of giftedness. Gifted kids tend to have certain intensities, also known as overexcitabilities. OEs come in five flavors: psychomotor (surplus of energy, impulsivity), sensual (enhanced sensory and aesthetic pleasure), intellectual (intensified activity of the mind), imaginational (free play of the imagination), and emotional (emotions are intensified). While most gifted kids present two or three of those OEs, A presents all five. (By the way, this is where my head explodes when people make comments such as, "What does she have to worry about? Her kid is gifted!" Yeah, it's a barrel of freaking laughs around here). So when you look at those five OEs, can you see how they might mimic ADHD? Especially to doctors who only know ADHD? Or to a mom who hasn't learned about OEs?

So I suspect that A may not actually have ADHD after all. I'm happy about that, but also taking myself out back and beating myself with pointy sticks, too. I know we made the best decision we could with the information we had at the time, but the fact that A was on meds for three years and is now one of the smallest kids in his class weighs heavily on me. We will continue with what we're doing now with diet and lifestyle changes (including adding gymnastics and returning to some of the activities we learned in OT), and revisit medications in the future if necessary. 

I just wish I had 20/20 foresight for a change.


Jen can be found writing at Laughing at Chaos when she's not beating herself up over her parenting.

Friday, February 26, 2010

Details, details

Noel is a stickler for details. The details, like the word we use, the rules we have in place, or what we do and when, create order in a world that for him must seem pretty random and unpredictable.

It is 'dinner' and not 'supper'. A cupcake is a 'treat' even if it occurs right before bedtime, so therefore, one still needs a bedtime snack even if they just gorged themselves on half a pound of buttercream. Another note on the bedtime snack is that it can only be consumed when the sun goes down.

The time to wake up is 7 am. (Once, Noel overslept, and woke up at 8. He was worried that he wasn't going to be allowed to get out of bed until 7 rolled around again.) Once awake, you make your bed, eat a snack, play some Wii, then have breakfast. Every. single. day. Heaven help us if we need to do something else on one of those mornings. No amount of preparation seems to help.

New details are easily introduced, and nearly impossible to shake. Last weekend, Noel had an upset stomach, and so he went to bed with a bowl, just in case. Now, he must sleep with the bowl. The threat of getting sick is long past, but the bowl is now a part of his bedtime ritual. (What ritual, you ask? Well, first he uses the bowl as a drum, then as a bobsled.)

Most of the time, veering off Noel's idea of what happens, when, how it is described, and so on, leads to a meltdown of epic proportions.

Some rituals are helpful - waking up at 7 saves us from many way too early mornings. Making your bed every morning is one that no mom can complain about.  Some are disruptive - book an early appointment and try to interrupt his morning process, and you're in for a lot of tears. And some, are just plain comedy.

A few nights ago, during a tantrum, Noel hit my husband, Kyle, in the head with a toy wooden frying pan.

Later, when Kyle went to tuck Noel in to bed, he asked Noel to never hit him again with a pot.

Noel's response. "Okay, Dad. But it was a pan, not a pot." The story, relayed to me moments later, made me giggle, and made the residual anger and frustration over the earlier event melt away.

This is the key to surviving as a parent - laughter. Finding the humour in the situation diffuses it. So I try to find the humour in every day, and it makes this journey just a little bit easier.



Stephanie is at Robot Tea the rest of the month, although her record is spotty.



Thursday, February 25, 2010

I deal, you deal—we just might not deal in the same way

I am haunted by a blog post I did a couple of weeks ago. In it, I talked about grieving about what had happened to my son, Max, who had a stroke at birth that resulted in cerebral palsy. My words were, exactly, "Seven years after Max's birth, I still mourn the loss of the child I expected, even though I love and adore the child that he is."

I ended up engaged in an e-mail rally with another mom of a child with special needs, who could not, she said, "understand" how someone could mourn or grieve their child. She herself, she said, had never once grieved over her child. She went on to make it clear that there is no right or wrong here—but still, that didn't feel like her real message. Her underlying message seemed to be, "I did not mourn. Why did you?"

Stuff like this unnerves me because, really, every one of us has dealt in our own way with what happened to our kids, and continues to deal. We do the best we can.

Hearing someone say "I just don't understand"—even if they really don't get it—is just not something I need to hear.

What's not to understand? 

My feelings?

You may not agree, but please don't tell me it is past your comprehension how a mom could be despondent over what happened to her child. 

Ellen blogs daily at To The Max

Wednesday, February 24, 2010

the definition of sportsmanship

What are most 8 year old boys interested in?  I ask this because MY 8 year old (and oldest child) is on the autism spectrum, so I guess my perspective on things is a bit skewed.  Mr. Literal, as I call him, has had his share of unique interests over the years..........cell phone companies and their slogans, hotel chains and their breakfast areas, and my personal favorite---writing words and phrases on paper, cutting them out, then taping them to the walls ALL OVER THE HOUSE.  Every surface needs repainting, but I digress. 

So, you can imagine that I was delighted when Mr. L's obsession turned to sports about a year and a half ago.  Regular sports, real sports, especially basketball.  I supported the interest, buying every cool basketball-themed shirt I could get my hands on, and we started letting him watch SportsCenter in the mornings before school.  Last year, my husband and Mr. L went on a boys' weekend trip to see the Charlotte Bobcats play, since they're our nearest NBA team.  And all throughout, Mr. L keeps saying that he wants to play basketball on a real team himself.  He's tried soccer (not a big hit) and baseball (he likes it, I guess).  I didn't even know of any local basketball league for kids, until we heard of one last fall from a Mom I met at the speech therapy clinic.  The league was run through her church, and she assured us it was not one of those cutthroat, "it's all about winning" kind of leagues.  When I told the boys about it, they both wanted to play, so we signed up, paid our fees and hoped for the best. 

The season started in November, and will end this coming Saturday.  It's gone well, thankfully, and been a positive experience for both boys.  Basketball playing hasn't come naturally to Mr. L, but I'm so proud of how hard he's worked and how well he's handled disappointments and losing (being on a 2-6 team gives you lots of practice at losing).  He soaks up every instruction that the coach gives, and his intense focus on the game and the ball is unmistakable.  We made the decision not to "come out" to the coaches and kids on Mr. L's know, about that *autism* thing.  I wondered, though, as time went by, whether the other kids liked him or thought he was that weird kid who'd never played real basketball before but is taller than the rest of the team.   

Throughout the season, it had been periodically mentioned that there would be an award given at season's end that would be voted on by the kids themselves.  It's called the Glory Sportsmanship Award.  The league handbook specified that the award shouldn't necessarily be for the best player on a team, but for the child who exemplified true "sportsmanship" by dedication to the team, hard work, good effort and improvement, etc.  In my role as passionate advocate for kids with autism AND as super-proud Mom, I couldn't help but feel that Mr. L was the obvious choice for this award.  I figured, though, that I was the only one thinking that way. 

Mr. L voted for a teammate named Constantine.  The kids were told to write their vote on a piece of paper, along with the reason for choosing that child, and bring it to last Saturday's game.  According to Mr. L, he chose Constantine because "I don't see him panicing when we lose" (Mr. L's spelling, not mine!)  We turned in his vote to the coach, then took our seats to watch the game.  The league director brought out the microphone so that each coach could present his team's award in front of the entire gym full of parents and fans. 

***quick interjection***

If this was a movie, you'd look for the happy ending right about now, wouldn't you?  And when it happened, you'd think it was maybe just a little too perfect, a little too sappy and sweet, and that nothing that perfect could ever happen in real life.  Well guess what? 

Mr. L's team, the  Dragons, voted MY son the winner of the Glory Sportsmanship Award!  That group of 9 little boys, aged 7 and 8, really listened to the instructions for voting and chose my sweet little awkward guy with the huge heart as their award winner.  His name was called, he stepped up and received his nice trophy, then stepped back into line with his team and looked out in the crowd for me.  After all teams had given their awards, he ran over to me with the proudest look on his face that I think I've ever seen him have.  He was truly surprised and touched, as was I.  But I can tell you this, NO one else on that team, or in that league, exemplifies what sportsmanship should really mean any better than my son does.  And for once, just this one time, we had that too-perfect, too-sappy fairy tale ending.  Now I just have to hope that the idealism and generosity of those kids on his team stays with them when they grow up, and maybe even extends to the rest of the adult population.  After all, each of us and each of our kids deserves at least a few of those fairy tale moments. 

Tuesday, February 23, 2010

Looking To The Future

I participated in a person-centered planning session yesterday with my 17 year old daughter, Jessica and several other people who are interested in Jessica’s future. Although I had read and heard about the person centered approach for many years, I had never participated in the development of a plan for anyone. I really enjoyed our session yesterday, and I feel much, much better about Jessica’s future.

“The person-centered approach relies much less on the service system by organizing truly individualized, natural, and creative supports to achieve meaningful goals based on the individual's strengths and preferences. No longer is planning based on "the services available at the present time" which has been the age-old excuse that has restricted our thinking, planning, and actions. The person-centered approach creates a team of people who know and care about the individual with a disability, who come together to develop and share a dream for the person's future, and who work together to organize and provide the supports necessary to make that dream a reality.” (Garner and Dietz, Virginia Commonwealth University, Severe Disabilities Technical Assistance Center).

We began our meeting yesterday by asking Jessica what her dreams for her future were. She did an excellent job of expressing herself, and shared with us that she wants to live in an apartment with one or two other people, and she wants to be a nurse or nurse’s aide. She shared that she would like to go on vacation to Florida, and that she would really like to have a boyfriend. Sprinkled throughout her discussion was a common theme – she wants to help people.

After Jessica shared her dreams with us, we all stepped through what would have to be accomplished for her to achieve those dreams. With Jessica’s input, we developed goals for her. She knows that she must do well in school to be able to be a nurse’s aide. She said she needs to be able to read and write well and to use a computer. She acknowledged that she has to be able to get along with people, and if she gets angry, she said she needs to “learn to use her words and not her hands” to deal with that anger. She said she needs to learn how to cook and clean and do her laundry because “Mom’s not going to come to my apartment and do it for me.” Smart girl!

The next step had Jessica listing what her positive attributes were and what her not-so positive attributes were. She feels she is smart, pretty, very sociable, well mannered, and a good eater. She knows she needs to work on dealing with difficult situations and keeping herself safe and healthy. She had some very insightful comments concerning her health given that we are smack dab in the season of overeating and other excesses. She knows she needs to learn how to handle money, and how to travel to and from her job. In short, she has a very realistic and positive view of her future, and her support team and I are poised to support her in getting there.

Our next step is to find a doctor’s office, perhaps a pediatrician’s office, that will allow Jessica to do volunteer work several afternoons each week. Jessica wants to walk with the nurses to bring people to exam rooms, help record their height and weight, and help the children not be so scared. Her charming personality will really be an asset there!

I believe person centered planning is really going to make a difference to Jessica and her future happiness. Although the process is normally targeted to people with significant disabilities, I would like to go through the same process with my two sons. In my opinion, we could all benefit from sharing our dreams and goals, and identifying support systems to help us realize those dreams.

I’m very proud of you, Jessica!

Monday, February 22, 2010

In Bereavement

I’m a television producer by trade, so when I was given the news that the man I had left 2 hours earlier, in the home and life we shared, was now dead, I fell apart briefly.  But then my professional instincts kicked in.

A half-hour drive from home and in shock, I started making calls – to people who could rush to my son’s side, now alone in the house with the police and my husband’s body; to my in-laws, whose only son had just died; to my extended family, who could fill the house and chase away fear; to my friends who could comfort me during the excruciating free-fall. 

I was in a crisis and that’s what a producer manages.

G., who has limited language skills, was brought to me. I was told I needed to relate to him that his father was dead. I looked G. in his eyes and said, “Your father is dead.  He won’t be coming home”.  Ok…uncomfortable.  G. had no idea what the phrase meant.  Back to the phone.  I had to organize a funeral home, set up a memorial, make the Thanksgiving dinner that was sitting in my car trunk.  From then on, my memory fades.

For almost 2 months I was able to operate in this way: things needed to be done, so I did them.  Zombie-like or not, I was able to get them done.  But once the utilities were changed over, accounts were transferred and death certificates were distributed and filed, the mourning began.  And it’s something I cannot organize, manage or produce.

Everyday is like wearing a tire around my neck – my shoulders are tight in the back and my chest feels like it’s being thumped constantly in the front: like I literally have a broken heart inside.

I have the confusion of survivor’s guilt – why wasn’t I there?  Did I bring this on?  When I saw J. bent over his desk 6 hours before he died, in the wee hours of the morning, didn’t I understand a primal instinct that something was really wrong?  Why didn’t I force him to go to the hospital when he told me he wouldn’t go.

Then, there’s the knowledge that my sons no longer have a father.  Is that shameful?  What do we do without a father – how does that work?  Why us?

Then there’s the trauma of knowing he died in my desk chair, in our bedroom.  That the paramedics placed his body on our bed, the one I sleep alone in now.  That our blankets and some of my clothes had to be thrown out because of what the body does when it’s finished with rigor mortis.  I have new sheets, pillows and blankets but it doesn’t stop me from waking up at 4am to imagine the scene as it would have been on that very day…

I cry most when I’m driving, but once I thought to myself, “Would I even take him back if he wasn’t dead now?”  I clutched my head – did I kill him?  No Silly!  You learn in therapy -  it’s the heart’s way of protecting itself.  Or is it?

Days turn into weeks and so on, but these thoughts are relentless and exhausting, with only a small amount of light that creeps in unexpectedly.  It becomes painfully obvious to me that the easiest way to end it would be to kill myself. 

But I still have to work because I still have to set the pace for my children, who need so much care because they themselves have no idea of what’s going on.  And therein lies the rub: you keep going because your children provide purpose.  They are the legacy.  They are the fight that keeps you boxing, even though you’ve been hit square in the face so much you’re almost blinded.

I sit here typing in front of photos of happier days.  I’ve begrudgingly de-activated J’s Facebook page.  I’ve sold his car, meaning I will never again blow him kisses good-bye as he leaves the garage.  Every day I trudge through the indignities of letting go.  I weep and I shuffle slowly, afraid that I’ll lose sight of the past in search of the future.

Everyday, I stare at his toothbrush in the bathroom as it leans sadly down in our toothbrush holder.  It waits silently, as I do, for the off chance he’ll return to brush his teeth.

Sunday, February 21, 2010

Happy Birthday, My Sophie-Girl

The deal with me is that I hate to say that I’m defined by my daughter, but the fact is that I am. After almost fifteen years of dealing with her profound disabilities, watching tens of thousands of seizures and running ferociously toward any implied help, I am changed. Changed, though, from whom? I know that were I to extricate myself from Sophie, the neurologists, the alternative practitioners, the drugs, the treatments, I might have to build someone new. I have a feeling that relationships, those with husbands, with children, with friends, might only be abstract and that I am and have been busy using those relationships, those people, to make myself up.

Sophie has been alive for fifteen years this March 8th, and during all of those years, save her first three months, she has endured multiple seizures every day. We have yet to find out why, and her imperviousness to traditional anti-epileptic medicines has stumped all of the doctors we have consulted.  The western medical world, in particular, looks to define everything in the most concrete terms.  There is a way to describe Sophie’s particular type epilepsy, a definition that in essence reveals absolutely nothing. Sophie’s diagnosis is “refractory seizures of unknown origin.” It seems that Sophie’s brain is incredibly dysfunctional for no apparent reason and will not respond appropriately to any kind of  customary intervention.

When I gave birth to my beautiful daughter on March 8th, 1995, I naturally had no idea what the future would bring. A new mother, my expectations were like those of millions before me. I would love this child and with my husband bring her up happy, well-adjusted, educated and, hopefully, tolerant and kind to others. I thought my values were simple, my hopes pure, and my faith in the natural order of things profound.  Three months later, when Sophie was diagnosed with infantile spasms, these expectations were quite abruptly up-ended. The particulars of that time are crystal-clear to this day, but only much later was I able to articulate the stunning loss I felt. It seemed that day that the child I had given birth to had been taken from me and replaced with someone new. It seemed that I would have to redefine my expectations, redefine Sophie, redefine myself.  And unlike those expectations that I had had before, those of a normal life with a normal baby and family, these were terrifying. In fact, I really had no more expectations; there was nothing, it seemed, to expect.

I often tell people who ask how do you do it? that if someone were to tell me fifteen years ago that I would still be comforting my now five-foot tall adolescent daughter as she seized on her bed, or that I would still be feeding her because she can't feed herself, or that she must be bathed and dressed and kept clean because she can't herself, that she can walk but with assistance and has never uttered a word -- well, I might have felt like jumping out of the fourth story window of the tiny apartment where I lived, that baby in my arms.

Fifteen years ago this place, this time, this person that I am and this young lady for whom I have been given the honor of caring were enveloped in fog, buried in deep moss, sheltered by thick trees, invisible to any presentiment or even reflection. Despite the near-constant struggle, I look at my Sophie and am filled with love for her. I marvel at her grace while wishing for her ease and gather my other two children, my strong boys, my husband into my gaze. I feel the presence of my family, my mother, my father, my sisters and brothers-in-law around me and then my friends, those who share much of my life quite literally and those who are far away but with me in spirit or likeness. 

And it is good.

That is what I tell the person who asks how do you do it? That is what I tell myself when the enveloping fog, the deep moss and the thick trees loom ahead, when the path is obscured and I think how will I do it? I know that I will find myself, fifteen years hence, doing it, and it, too will be good.


Elizabeth blogs regularly at a moon worn as if it had been a shell.

Saturday, February 20, 2010

The A-Files

I started watching The X-Files when my first child was born in 1994. I would often watch an entire episode with Nigel sleeping on my shoulder, gently rocking him as I waited for his father to get home from work at night. The show’s then-unconventional subject matter of two FBI agents investigating strange crimes and bizarre phenomena appealed to me, and I continued to watch it until it ended in 2002.

Meanwhile, in 1997, I started keeping my own files. That was the year that we began having Nigel evaluated for his lack of language development, among other concerns. We went through numerous tests, home visits, and various assessments over a six-week diagnostic period. And then we were told what the therapists probably knew much earlier: it was autism. Our first IFSP meeting was scheduled, early intervention services began, and my files grew. Six months later, I discovered the website for the Autism Society of America and was relieved that I now had some information that I could print out for relatives and friends to read – basic information about autism that had been so hard to find twelve years ago. I made copies and put them in the file.

A year or so later, we began to realize that our younger son also exhibited signs of autism – a disheartening language delay and prominent sensory issues. So he was also evaluated, and, although not diagnosed with autism, he still needed speech and occupational therapy. I started a file for him, too.

The years went on, and two kids with IEPs produce tons of paperwork. I saved most of it, wanting to have everything documented, trying to be a responsible special needs parent, and just not sure what needed to be saved and what didn’t. In addition to the boys’ individual files, I also kept files on general autism information as well as related special needs advocacy information. The files were both full of articles I’d pulled from magazines and newspapers over the years, old clippings from genetic theories to the vaccine issue to stuff I’d found on terbutaline and other neurotoxins. I clipped sidebars on teaching strategies, visual schedules, and sensory issues. There were reprints from early Newsweek and Time magazine cover stories on autism. I saved articles on biomedical treatments, various types of therapy, autism in adulthood, and special needs estate planning. My files covered a lot of ground.

And last weekend, having the need to downsize to a smaller filing cabinet, I decided it was time to clean out what I’d dubbed “The A-Files.” I tackled my younger son’s file first, smaller due to the fact that he had no longer needed an IEP by the time he turned ten (three years ago). I saved a few of the more important IEP copies and his early evaluations. Then I moved on to my firstborn, whose file had actually torn at the top from the weight of it, and been taped. His, of course, took much longer to wade through, but I think I did a good job of judiciously separating the grain from the chaff. It felt odd to go back so far, to see things that I’d written – behavioral observations, for example – eight, ten, and twelve years ago. I was struck by how little I understood of autism then, but also by how determined I was to help my son.

By the time I got to the last file, the general autism file, I didn’t realize how fragile I was. I had breezed through my younger son’s file, and although I had lingered considerably longer on my older son’s file, I felt like I did all right with it. I thought that I’d kept my emotions at bay. But I had barely begun to sort through that last file when my face suddenly twisted into a grimace of pain and sorrow. A hideous sob racked my chest. The gig was up.

I know what it was that finally got to me. It was the printed evidence that autism has shaped our lives. Maybe I subconsciously thought that all this paperwork would somehow help. That saving it was like some sort of a karmic point system, that it would make a difference, sitting in my filing cabinet. All that documentation, all that information. Evidence. Unresolved, just sitting there. Like that show I used to watch.

But then the sobs subsided as quickly as they’d begun. I realized that autism shaping our lives isn’t just about the negative. Yes, it’s often been very hard. There are plenty of things that I wish could have been different. But in those files are also many positive reports of progress – the gradual meeting of goals that seemed too lofty when written, emerging skills, developing ability. That, too, is evidence. Evidence of determination, commitment, and hope.

You can bet I’m saving that paperwork.

                               Tanya writes TeenAutism.

Friday, February 19, 2010

Beyond Our New Normal

Six months.  It's been just over six months since my phone went off in the middle of my dentist appointment and when I answered, thinking it was my son's school, instead learned that my husband had been grievously wounded in Afghanistan.  This certainly did not improve my generally bleak outlook when it comes to dentist appointments, even though the dentist did say that I have beautiful incisors in an attempt to cheer me up.  He meant well.

I wrote last August about how I believed we'd "find our new normal" and about how in a few months all the things that seemed so scary would probably be routine.  Since then everything and nothing has changed.  All of the small details (what vehicle we drive, the number of appointments we go to, how much time we spend together, the arrangement of our furniture, even in the near future where we live) are completely different.  There were horribly frustrating moments as we were forced to make adjustments to almost every aspect of our lives.  But the important stuff-- our outlook on life, our parenting philosophy, and our love for one another-- haven't changed in the slightest.  We're still the same people we were before Jer, as he puts it, "lost at minesweeper."  I'm pretty glad about that.

And we've found our new normal; we've really got nothing to complain about. Not only that, but we've also learned some pretty neat things about ourselves along the way.  For example: I now know that it is indeed possible for me to handle carting two members of this family to two sets of doctor and therapy appointments at different offices on the opposite sides of the city from each other (normally 6-9 trips now, but fourteen appointments and one trip to the ER during one particularly memorable week).  In fact, I've gotten so used to our crazy routine now that when Jeremy is able to drive again sometime in the near future I'm not sure what I'll do with all my free time. 

So now that we've figured out our new routine, we're going to shake everything up.  Apparently we like things exciting over here.  Once we're settled in our new gorgeous fully wheelchair accessible home (thanks to some pretty amazing people) we're going to be starting the adoption process.  And while we don't have a particular kid or set of disabilities in mind, we absolutely know that we'll be adopting another child with special needs.

Jeremy is home for a good long stretch while he heals right now, and by the time we get through all of the paperwork he should be fully independent again and I won't be stretched too thin.  We know we can handle having another child financially.  Our home will be completely set up for a variety of disabilities, and we already have experience navigating the sometimes-befuddling world that is parenting a child with special needs.  And we're ready-- more than ready-- for more children.

Yeah, the general consensus will probably be that we're completely nuts to want to do this.  We're just getting to the point where our lives might be slowing down a bit; why in the world would we want to go and do something like add another kid-- especially another kid with special needs-- to the mix?  And yeah, maybe we're crazy.  But we're of the opinion around here-- even more so after the events of last August-- that putting things off because there will be some magical "perfect time" to do them later isn't the best of ideas.  Who knows what later is going to look like?  Who knows if there will even be a later?

  As far as the special needs part goes: well, currently the non-disabled members of our family (that would be me) are outnumbered, and we go by majority rules around here.  Give me another forty years and given my family history I'll probably have horrible arthritis and major hearing loss, so it's only a matter of time before I fit right in.  We're not really worried about outside opinion as we're already a parade in grocery stores, so it would be very hard to attract more attention than we already do. 

So we've crunched the numbers, we know we can afford another family member, and even though I'm sure we could come up with a whole lot of excuses why we shouldn't do this, what it boils down to is that it feels like the right thing for us, and that's really all the justification we need.

So, goodbye to our current normal.  Bring on the next adventure!



You can find Jess daily at

Wednesday, February 17, 2010


“Ever think of getting this boy a dog?” Dr. Willis says from the comfort of his green leather, swivel chair. We’re on opposing green leather couches that run perpendicular, a square oak table being their conjoining point. On a matching square oak table next to him, Dr. Willis has Rojo’s chart. Can you call something that is eight inches tall, “a” chart?

We’ve been coming and sitting on these green couches for twelve of my son’s thirteen years. My husband on one, me on the other; we know our places, we know the routine, we know each other. The behavioral/developmental pediatrician checks in on Rojo’s peer relationships, diet, “tolerance of frustration,” academics and family dynamics. There is nothing he can say that he hasn’t said before. We are pros. Curve balls are a thing of the past.

I look at him suspiciously, eyebrows raised, refusing to take his bait. Instead of answering I keep my eyes straight ahead focused on the floor to ceiling windows. I will not answer such a ridiculous question. Of course we are not getting this boy a dog. Nor are we sending him to the moon. Such lunacy does not dignify an answer.

“I’m serious,” he says, giving his graying brown hair a swipe back into place and crossing left knee over right, slightly swiveling in his chair.

“No. We have not thought about getting this boy a dog,” I say, moving my eyes hesitantly from the windows to his too-big, outdated glasses. “I need another thing to take care of like I need a hole in the head.”

“I understand.” Dr. Willis says, moving his gaze over to my husband, who wisely says nothing. He would get a dog in a minute and he knows I know that. He also knows that I will be the one most impacted by a dog, and that my sanity already hangs in the balance. He knows muddy paw prints and hair will rock that balance. He knows.

“The right dog, however, would make your life easier, not harder.” Dr. Willis continues. “The right dog would give 90% and take 10%. The right dog would teach Rojo responsibility and be a companion to him. The right dog would help him through this teenage transition in a way you cannot.”

“I agree to at least talk to some of my friends that have both children with special needs, and dogs, and gather information. I agree to do that,” I say with a smug look on my face, I have managed to dodge a bullet while remaining the very essence of open-minded and cooperative.

Apparently I have left the office with more than an open mind and a cooperative nature, I have somehow invited the universe to make a crack into heaven and let the perfect dog fall out and land in my lap, because just sixteen days later we, are not walking out of a doctor’s office, we are walking out of Guide Dogs with our newly adopted, six-year-old retired service dog, Flicka.

She makes my life easier.

She gives 90% and takes 10%.

She is a companion and friend to a boy that badly needs that.

She is teaching my son responsibility.

She is helping with a complicated teenage transition.

Dr. Willis was right, and I am thrilled to say I was wrong.


Tuesday, February 16, 2010

three years

Three years.

A lifetime.

Three years.

A world away.

Three years.

Might as well be yesterday.

Three years ago I sat by the side of this very pool that I sit by today. Three years ago I was paralyzed, terrified, sinking into an impotent rage.

A year later I'd written about that day.


... We took a vacation last spring when Brooke was four. We were down in Florida and I was watching her drift around the pool in a floaty, aimlessly wandering around the shallow end, like her own little island among various groups of kids playing with each other. She came upon three five and six year old girls who were enthusiastically pretending to be swimming princesses.

Brooke is a child who is incredibly (and, relative to her diagnosis, somewhat a-typically) socially motivated. It is heartbreaking for a parent to watch her attempt to approach other kids, particularly those who don’t know her. She obviously wants to engage other children, but she has no idea how to do it effectively. A year ago, she had even less of an idea than she does now. And so, what she did in order to try to join in the reindeer games was to tell the girls their names.

I’d imagine that it goes without saying that she didn’t actually know their names, but that didn’t deter her. She floated on over to them, insinuated herself right into the middle of their circle, and, with an outstretched little arm, she pointed at each of them in turn. “You’re Maya. You say, Hi, I’m Maya.” “You’re Fooey. You say, Hi, I’m Fooey.” And so on.

I sat paralyzed at the edge of the pool. I had no idea what I was supposed to do. Do I smile and pull her away from them without explanation? Do I try to explain? What exactly would I be explaining to a group of five and six year-olds? Do I jump in and somehow try to reshape this misguided attempt at conversation (which is what I would now do, but I wasn’t then prepared to do)? How do I save my child from the hurt that I see coming at her like an oncoming train? What the hell do I do?

As I sat there trying to figure it out, the little leader of the pack piped up and said, “My name’s NOT Maya, you weirdo! Come on you guys.” And with that, she and her little swimming princess posse turned their backs on my baby. I consider myself a good person. I love children. I’m an organ donor. I like rainbows and musicals and cuddly little bunnies. Yet it was all I could do not to drown that little %$@&*


And now, here I sit at this very same pool. Brooke - now just a month away from seven - is over in the hot tub with her dad, floating around in the warm water. I watch her older sister, Katie swimming. She is diving and handstanding and imploring me to watch her every move. Mama, count how long I can hold my breath, Ok? Promise you'll watch, Mama! My big girl. My sweet, typical, big girl.

"Hey," says a voice from behind Katie.

"Hey," she reciprocates.

"How old are you?" asks the girl.

"Almost nine," Katie says casually. "What about you?"

"I'm eight," says the girl.

Seniority has been established.

"So, you want to play?" asks the girl.

"Sure," Katie says with a shrug. "What do you want to play?"

"I don't know," says her new friend.

"Hmm, you want to just do stuff together?" Katie asks.


"Hey, Mama," Katie yells. She waves at me. "We're going to go 'do stuff', K?"

I dare to glance over to the hot tub.

My heart aches with the contrast.

Three years.

A lifetime.

Three years.

A world away.

Three years.

Might as well be yesterday.


Jess can be found at Diary of a Mom, where she writes about life with her two beautiful daughters *Katie* and *Brooke* and her husband, *Luau*. She has recently begun the loooong, slow process of changing their real names throughout her blog to these pseudonyms in an attempt to restore their online anonymity. 

I Heard It

I daydream in words.  I hope in words.  Not so much in pictures - I don't envision my children's graduations or weddings or Nobel Peace Prize ceremonies in shapes and colors and facial expressions.  Rather, I hear certain mundane phrases in my mind, phrases I hope will be casually batted about in relation to their lives - things of little note when heard, really.  When my daughters were babies, before they could get around on their own, the phase "honey, come back here" would worm around in my head. I could not wait to see them waddling away from me, I wanted to have to call them back.   When I finally said it, it was momentous to me.  As my older daughter reached preschool age the MP3 player in my nut played and replayed the sing-song sound of a genuinely happy-to-see-her teacher's voice greeting my girl with "Good morning, Catriona."  Mrs. Bartell said exactly that eventually.

I heard one for Addie today. Addison is my kindergartner.  Among the many things that make her an original are the fact that she is functionally non-verbal and intellectually diverse.  For Cate (aka, Catriona) these words were just an assumption, not a milestone and bag of meaning they are for Addie. Oh, I know I heard it for Cate, but it barely registered as more than the 3 word utterance it is.

Today Addie and I meandered past the parked and waiting cars along the block of her school. I park a bit farther away so that she can get used to walking a bit, paying attention to the crossing guard's directions, and practice navigating with her backpack on. As we approached the halfway mark, a car door slammed behind us. Normally, Addie feels a need to stop and turn in the direction of every sound we hear - cars passing, kids yelling, horns honking.  This walk eats a chunk of time.  But instead of her being the one to snap to the slam today, I was attuned to it for some reason. My ears perked in that direction just in time.

"Addie! Addie!" A frantic and excited voice emitted from the direction of the slam. Neither Addie nor I had time to turn around before the daydream phrase rose clear and pure above the accompanying sound of friendly running feet and a backpack bouncing up and down in rhythm with each step closer.

"Addie, wait up!"

Monday, February 15, 2010

Why Must There Always Be a Problem?

There is a Seinfeld episode in which George Costanza wants to buy a Frogger video game machine in order to keep his high score in perpetuity. When he realizes that by moving the machine—and unplugging it—his high score will disappear, he shouts in frustration: "Why must there always be a problem?!"

Sometimes I feel like I live my life in George Costanza's world.

I have spent the past four years learning about autism, learning about therapies for autism, learning to advocate for my autistic child, and building bridges in the autism community, both local and online. The fact that I still feel like a neophyte is beside the point.

The point, and I do have one, is that now that I have poured my soul into learning to parent one child with autism and two typical kids, I'm starting to figure out that my two non-autistic kids may not be so typical after all. I've just called Child Find about my youngest son, which brings me to three early intervention calls for three kids.

The thing is, my youngest son is not autistic. He's much more OCD, which is something I know nothing about. (Other than my own little bizarro OCD tendencies.) We're starting to look at my oldest son in terms of counseling and impulse control issues, which may or may not be a diagnosable issue, but I do know that I'm pretty clueless about figuring out how to go about the whole thing.

I understand that even if they did all fall under the ASD umbrella that they would still all be very different children with different needs, but at least I could follow the same basic roadmap that I'm already on. Frankly, if they were all typical kids, they'd be very different children with different needs, but again: same roadmap. Do I really have to start from square one with a whole new set—or two—of issues to research?

The fortunate thing is that I see bits of myself in each of them, which is both reassuring in that I kind of know what they're thinking and feeling, and sort of a bummer in that I've passed on these extra challenges to them. But at least I have a little bit of a start point.

I'll figure it out. We've started down paths to get everyone what they need, and I'll learn along the way, just as I did with my first complicated kid. But, jeez, why must there always be a problem?

Stimey is learning as she goes along and blogs about all of it at her personal blog, Stimeyland. She also writes a Washington Times Communities column called Autism Unexpected and runs an autism events website for Montgomery County, Maryland, at AutMont. If she has to start new blogs for a whole new set of disorders, she'll never be able to leave her computer again.

Sunday, February 14, 2010

Transforming Compassion Fatigue: Key Strategies for Helpers and Caregivers

Family caregivers often have to juggle many competing demands: caring for their child with special needs, meeting the needs of the rest of the family, work, household chores, remembering everyone’s birthday, balancing their budget, doing groceries, medical appointments, the list goes on and on.  As a result, they may stop taking part in their own leisure activities and physical exercise, or in any activity that isn’t “functional.” They can end up feeling drained, discouraged, irritable and even depressed. When caregivers run out of steam, we call it Compassion Fatigue: a form of burnout that affects caregivers and helping professionals who are offering help and support to those in need.

Compassion fatigue can lead to profound shifts in the way caregivers view the world and their loved ones. They may become dispirited and increasingly cynical, they may fight more frequently with their spouse or may lose patience with their kids. It has been shown that, when we are suffering from compassion fatigue, we work harder and harder. What suffers is our health and our relationship with others.

 I am a compassion fatigue specialist and mental health counselor. I have spent the bulk of the last decade studying the phenomenon of compassion fatigue and burnout in professionals and family caregivers. I have the privilege of travelling across the country nearly every week, offering educational workshops to helpers of all stripes. During these workshops, I get to meet and talk with hundreds of helpers and many of them speak of the incredible emotional depletion they are feeling. I have done a great deal of writing about compassion fatigue and strategies and solutions that can help. I would like to offer you a few strategies here. If you are interested in hearing more about this topic, please email me: and I will aim to reply to your questions in my next post.


Here are five key strategies for staying afloat:

1.Take Stock: What’s on your plate?

To make changes and improvements, you need to know where the problem areas are. Make a list of all the demands on your time and energy (Work, Family, Home, Health, Volunteering, other). Try to make this as detailed as you can. Once you have the list, take a look at it. What stands out? What factors are contributing to making your plate too full? What would you like to change most?  What is most realistically changeable?

2. Find time for yourself every day

Are you currently able to get away for periods of time? Do you have access to respite care?  Even small changes can make a difference in a busy caregiver’s life. Make sure you do one nourishing activity each day. This could be having a 30 minute bath with no one bothering you, going out to a movie, or, if you are doing a lot of the caregiving work alone, it could simply mean taking 10 minutes during a quiet time to sit and relax. Don’t wait until all the dishes are done and the counter is clean to take time off. Take it when you can, and make the most of it.

3. Delegate -  learn to ask for help

Are there things that you are willing to let go and let others do their own way?  Don’t expect others to read your mind: consider holding a regular family meeting to review the workload and discuss new options. Think of this: If you became ill and were in hospital for the next two weeks, who would look after things on the home front?

4. Get some support

There are times when we all need support and validation. By openly discussing and recognizing compassion fatigue, caregivers can normalise this problem for one another. Consider joining or creating a support group or seek counselling.

5. Look after the Basic Three: Eating, Sleeping, Exercise

-Make sure you are eating nutritious meals that are low in salt, fat and sugar

-Walk 30 minutes three times a week

-Try to get 8 hours of sleep every night or as often as you can

-Lower your caffeine intake


Compassion fatigue is no one’s fault: it is a natural and predictable effect of the work of caring for others in need. It is in fact a sign that much of the work has been well done. It can also be used as a wake up call that improved self-care is necessary. Committing to realistic and reasonable self care goals can, over time, make a world of difference in the life of a helper and in fact benefit the whole family.



Françoise Mathieu, M.Ed., CCC is a Compassion Fatigue Specialist and the author of The Compassion Fatigue Workbook. She is a Certified Mental Health Counsellor and Compassion Fatigue Specialist. Françoise offers workshops and consultation to agencies on topics related to compassion fatigue, wellness and self care. For more info:, email:

Saturday, February 13, 2010

Happy New Year, AGAIN!

Do you feel like this year has gotten off to a difficult start? I do and I know many others who feel the same way. Chinese Medicine would diagnose this "difficult start" as stagnant because the ease is missing, the flow is gone. But, I have a better, hopeful way of looking at this dilemma. Do you know why? In China, this New Year begins on February 14th. I have a do-over. In the U.S., we have Valentine's Day and Presidents' Day and snow days this week, but China has a new year and a new start. I've decided my new year begins tomorrow! Tomorrow we begin The Year of the Tiger .

The tiger is one of the most dynamic and powerful signs. Its nature is unpredictable, courageous and volatile. Therefore, The Year of the Tiger is usually associated with big changes. This courageous and fiery fighter was admired by the ancient Chinese as the zodiac sign that kept away the three main tragedies of a household: fire; thieves; and ghosts.

Let's look at The Year of the Tiger as a chance to begin again, to reload the year 2010. Use this as an opportunity to shape your life. Shaping your life in the middle of winter is different than the same task would be in summer. Like the Tiger, we have to be a smart cat and know when to pounce and when to be still. Winter is a time to be still, so the new beginnings might not be as active or flashy as a Spring or Summer beginning. In winter, the days are shorter with less natural light, and certainly less warmth (especially here in Chicago!).

The ancient Chinese believed that human beings should live in harmony with the natural cycles of their environment. The cold and darkness of Winter urges us to slow down. This is the time of year to reflect on health, replenish energy and conserve strength. It is a time to let our bodies restore and rejuvenate. In winter it is important to nourish your kidney Qi (you can think of qi as your body's energy reserves). In Chinese Medicine benefits of nurturing your kidney qi include;enhanced ability to thrive in times of stress, faster healing, illness prevention and increased vitality. Sounds good doesn't it?

Perhaps your new beginning in Winter would encourage you to: go to bed earlier, rest, give yourself a chance to catch your breath, and eat warm hearty soups, whole grains, and roasted nuts to warm your body. Black beans ,kidney beans, asparagus, and dark, leafy green vegetables are all great choices for recharging your kidneys.

One more idea, this TCM tea is perfect for winter.

This recipe is from Adele Reising Acupuncture
200 East 15th Street, Suite A
New York, NY 10003
#646 336 1280

Black Sesame and Goji Berry Tea
1 cup black sesame seeds
2 Tbsp goji berries, rinsed
3 cups water
Brown sugar (raw, unprocessed)

Bring sesame seeds, goji berries and water to a boil and then reduce to a simmer partially covered for about 20 to 30 minutes until 1 cup of tea remains. If it does not cook down in 30 minutes, the flame is too low. Strain tea and sweeten to taste.

Black sesame seeds are very calming and good to drink in the morning if you have morning anxiety, or in the evening if you have trouble winding down. Black sesames nourish and calm the adrenals, as do the goji berries; overall the formula is very moistening. Brown sugar is full of minerals as are the sesame seeds, so this formula is rich in calcium and good for the bones. Brown sugar can be avoided for those sensitive to sugar, but the seeds are bitter. Maple syrup and honey are also suitable sweeteners as is agave; however, I prefer maple syrup or brown sugar for their high mineral content.

Ingredients can be purchased at the local Chinese grocery store or from an on-line service for Chinese herbs, such as Kamwo pharmacy."

Are you a Tiger? You are if you were born in: 1902, 1914, 1926, 1938, 1950, 1962, 1974, 1986, or 1998. If you weren't born in these years, you can learn from the Tiger - be a courageous, smart cat.

Friday, February 12, 2010

Parents as "teachable moments".

We live in a city that is home to one of the nation’s top pediatric hospitals; it’s one of the reasons why we chose to move here nearly 2 years ago. It also happens to be a teaching hospital, which I know has many rewards, but also its downsides.

My son was recently evaluated by the psychologists at this hospital, and then later diagnosed with autism.

I quickly realized that the evaluation would be conducted by a student (only 1 year away from her Ph. D) and supervised by one of the clinical specialists. She spent about 2 hours with my son in a very small, bright room with nothing other than a table and 2 chairs and a few toys. She had stickers on hand for reinforcements while her supervisor watched from the other side of the 2-way glass mirror. After escorting Ethan to the testing room, I was kindly told to wait in the lobby. That’s fine, but I would have liked to tell her that she picked the wrong toys, and that he actually finds stickers rather uninteresting.

I knew she was doing an IQ test, but I wasn’t aware (because I hadn’t thought to ask) that it was the Stanford Binet. Ethan is deaf and used an interpreter during the evaluation. The fact that the IQ test they chose was inappropriate for a deaf child could be a whole different post unto itself.

I’m no stranger to hard news when it comes to my son, and driving to this appointment I prepared myself for the inevitable. This is what I was not expecting:

The student and the supervising psychologist met me in the lobby and then escorted me to a tiny room with a 2-way mirror. She and I headed into the room while her supervisor sat in the next room to observe. I gathered that he was observing how she broke the news (and there was plenty of it), and how she responded to my reaction. This felt more like being in a simulation than the real thing. I felt reduced to lab rat status, not parent of a special needs child who was about to become even more special needs. 

She led the discussion with the data collected about his IQ, and then began to defend their findings before I had a chance to respond. She spoke repetitively about how they feel they got an accurate view of his abilities since they had an interpreter and used stickers for a reward.

Stickers are something that he sees at every single doctors appointment or therapy visit and he always just walks right by them. As far as the interpreter goes, Ethan had never met this person and had no prior experience with using an interpreter as he attends a deaf school where everyone in his environment signs. I think the use of an interpreter was pretty abstract for his little 4-year-old mind to comprehend.

I can’t help but wonder how the results might be different if I’d been involved in even the smallest way in setting up the assessment. I didn’t share these thoughts with her; instead all I could do was ask questions. Some of my questions were apparently tough because she said that no parent had ever asked them before and she’d address them in the best way she could, but that her supervisor would also need to weigh in.

Yeah, if he were in the room to answer my questions that would be Awesome! But he can’t because he is instead being oddly voyeuristic and watching us both flounder from the other side of the funhouse mirror!

I was seriously thrown off guard. I was in shock over the IQ data and I was speechless over the way this whole thing was set up. I had too many questions flying around in my head to adequately deal with the situation and though I remained very calm, I did at one point ask her to pass me a tissue. But never did I once put her in a position where she should have felt the need to defend anything, and that was probably my mistake. Some of what was said was indefensible. Yet somehow she took a defensive stance very early, probably because of her prior experiences with other parents being totally freaked out.

By the time we got around to discussing the autism diagnosis, I was really glad to be rolling a voice recording of the session because the words just all started to blur into one big hazy fog. I am only aware of what was actually said because I’ve played it back a few times. In so doing, I’ve been reminded that the supervisor left his post to come into the room to answer a question or two, only to duck out and back into his sneaky spying spot.

I don’t think this is in any way appropriate. It’s fine to hide in the “spying spot” if you’re assessing a patient’s behavior, but I find it morally and ethically reprehensible to sit in that room on the other side of the 2-way mirror and watch while a parent is given life changing emotional news.

As long as I’m such an integral part of her training, then why wasn’t I offered a chance to fill out an evaluation form from my point of view? I guess the perception of the family member just isn’t valued in this particular setting.

I’m going to contact our family relations division and see what can be done about it. I don’t mean to tattle or exact revenge, but if my complaint can ensure that no other parent ever has to sit in that totally surreal moment with a complete stranger watching through the glass, then it’ll be worth the time. 

Thursday, February 11, 2010

The Adventures of Super Parents

Robert Rummel-Hudson beat me to the punch this week in his discussion about the HBO movie, Temple Gradin. I haven’t seen the movie yet—one of the downsides of not having cable television and having a 4-year old who doesn’t go to sleep until 10pm. But given the chance, I would like to see it, since I do think that Gradin’s story about how she came to design cattle chutes is compelling. I also haven’t seen Extraordinary Measures, but aside from time and mediocre reviews, that movie seems too close to home for me— I like my movies to be a bit more of a relief than a reminder of my daily burdens and responsibilities. I’ve been thinking about movies like these that attempt to depict the often indescribable worlds of those living with a disability and/or life threatening illness. And I think what grinds at me is not the attempts to represent physical/developmental disabilities and the struggles that go with them, but the heroic depictions that inevitably make for a good story. Like the trailer for Extraordinary Measures claims “Don’t hope for a miracle, make one.” Well dammit, I’ve been trying to make a miracle since the days we first found out that our daughter has a rare and fatal neurological disease. But it takes more than one single person to address these large scientific mysteries.

The heroic tales we tell can often leave out the messy parts of life. Most doctors, as altruistic as they may be, cannot single-handedly hurdle over all the barriers set up by the insurance companies, the FDA, their colleagues, capitalism, and their own body of knowledge. There is no Harrison Ford out there working day and night to save Sylvie and the others like her. There are perhaps small hoards of researchers who are trying to figure out how to slow the disease down or detect the disease earlier. There is a disjointed pool of doctors and scientists that are trying to unravel how and why genetic mutations occur and how to treat them. But there is more money to be made improving and selling Viagra® than there is in finding a cure for rare and complicated diseases. And even if I had trillions of dollars to throw at the problem, money may still not create a miracle.

Movies like Extraordinary Measures, Lorenzo’s Oil, My Left Foot, or The Miracle Worker are said to be inspired by true stories of real people. I’m still waiting for someone to call me for the movie rights to my family’s story! I’ve been thinking of how we could possibly be an inspiration for an HBO movie where we get to be superheroes. First, in my superhero saga we are wearing pajamas a lot of the time. And the house is a bit messy, and both parents are a bit frazzled in a Homer Simpson kind of way. A bulk of the story would include some sub-plot relating to fairies and princesses—where papa is the huntsman, sister Sylvie is the princess mermaid, and mama sometimes plays the queen, sometimes the giant, sometimes the dragon. It depends on who is needed to complete the storyline and/or performance. On the other hand, maybe we would look a little bit more like The Incredibles—that quirky Pixar animated family that tries hard to fit in with “normal” society by hiding their super abilities. My twins would have unpredictable wonder powers, such as turning invisible at opportune times, running at 200 mph or turning slightly demonic if provoked. Papa and mama are adventure-seeking crime fighters, saving lives and battling evil with their buff physical strength.

Ideally we would galvanize the multiple families from around the nation to gather on the steps of the White House and Congress and demand that more medical research and funding go into treating our sick family members. We would demand, with rousing speeches and colorful banners and snappy slogans, that our educational system be better funded and equipped to deal with all children, including those with special medical/educational needs. Bills would pass with lightening speed, political and religious difference would be put aside, and there would be enough toilet paper in all the port-o-lets. Did I mention the great music, dancing and food that is available to everyone while we are rallying for this immediate and effective change? I am still working on the list of musical guests, but most definitely Chrissie Hynde and The Pretenders, Michael Franti and Spearhead, and They Might Be Giants will be invited. If you are looking for someone to play me in the movie about our life, I’d like you to contact Dolly Parton to see if she would be willing. She is absolutely charming: she has a lot more style, panache and spunk than I’m able to conjure up on most days. Aside from her singing voice, she has these great dimples, huge crossover appeal and a huge fan base.

The reality is that in my family’s superhero sage, papa feels a great sense of accomplishment if he gets both girls out the door to preschool by 9am and that Sylvie hasn’t choked on her breakfast. Papa also has an extraordinary skill of longitudinally recording over 20 months of Sylvie’s seizure activity to wow and impress the pediatrician and neurologists. It’s a good day if there are few tantrums and everyone has gotten enough rest.

In the review of Temple Gradin the New York Times the critic noted that the life stories of extraordinary individuals with disabilities are viewed by parents as “a yardstick for their own hopes.” I’m not sure I agree. One of the other reasons I am not eager to see Extraordinary Measures is that it is my fears, not my hopes that the film measures. These “tales of valor” may be extraordinary, but I think we can find hope and inspiration from the ordinary. Most of us—with or without a disability— are lucky just to get out of bed and get dressed each morning. In our quest for the superheroes or remarkable acts to serve as quick fixes to our children’s predicaments, we may fail to acknowledge the tons of people behind stage that are serving as emotional-financial-social support and providers for us. In fact, most of us must find hope in the ordinary, because most of us are superheroes only in our own minds.

Kirsten Isgro is a professor of Communication Studies at the State University of New York and the mother of 4-year old twin girls.

Wednesday, February 10, 2010


I’m going to be honest with you:  last week was rough. There were good things in it, too, but overall, it was very difficult.

 Grief is not linear; it’s not a series of stages on a horizontal plane, as some books would have you believe. For me, it’s much more of a spiral journey, in which I meet different feelings and have up-and-down experiences on a continuum. It doesn’t have an ending or a graduation. I will feel better for a while, and then fall into a dark hole. Last week, I fell hard.

 It started with a simple argument with our beloved teenage son. I’m going to take a leap here and guess that practically all families with teenagers have disagreements - with their teenager, and about their teenager. This is considered NORMAL.

 What makes this “normal” experience intensely painful for me is that, having been through such abnormal circumstances since Katie’s cancer diagnosis, treatment and her death, we are an unusually close family. We were a tight-knit foursome before Katie’s illness; we bonded even more in solidarity to support her, living in extremely close quarters (four of us in one room, sharing one bathroom). We worked together daily to help Katie survive both the disease and its treatment. When she died, we became a team of three, and our focus turned to surviving her death - because we didn’t know how to live without Katie - we are still learning how to do that. Since no one other than the three of us experienced what we did (and saw what we saw) in the course of those months, we were a unique band of three. Three strong individualities, blended into a working unit.

 When a senior in high school turns his energies toward the college application process, and then toward the activities of his last year of school, there is a natural movement away from parents and into new territory. I did it when I was his age; most kids make this transition, with some degree of awkwardness and some degree of grace. It’s an exciting time, and I am happy for David, truly thrilled with the prospect of the next steps in his education. In all honesty, as hard as this stage would be for us in normal circumstances - our first child leaving home - it is much harder now that Katie (our youngest) has left home ahead of him, and permanently.

 My friends whose children have graduated from high school assure me that their families went through similar “growing pains” to ours, and that all we are experiencing right now is normal. What does not follow the expected pattern is the exacerbation of my grief for Katie which accompanies David’s pulling away.

 I want to prepare him with grace, and let him go with grace, but the process is not always what I would call gracious. It requires that I stay awake in the present moment, and step-by-step, move into a new role in life. That takes courage, energy and creativity - and sometimes, I am NOT fully awake, or able to see creatively. This is where the ungracious moments occur.

 After last week’s argument, I cried harsh sobs in bed, late at night, for the family of four that I miss, for the girl who I cannot hold, for the life we left when we checked into the hospital on October 10th, 2006. I cried for the life that ended with Katie’s last breath on August 16th, 2007. What remains of full-time motherhood is swiftly passing, as David pulls away and into the next phase of his young adult life.

 I don’t cry every time we have a disagreement. This time, it hurt.

It is my job to prepare him for to leave the nest; I have known and accepted that job since he was a baby. This is the natural order of things: we prepare him to go out and take his place in the world. But I thought I would have three more years of stay-at-home motherhood with Katie when he left. I was looking forward to her high school years, and all that we would share, after David embarked on his college career. I thought it would be gradual; I though it would happen gently. I did not expect that it would feel like broken glass and gut-punches.

 I am hopeful that this week will be better.

 The good news is that David completed his college applications, which were sent in on time. Tennis season went well, and ended with an award, recognizing him as a gentleman-scholar-athlete. Ski season is in full swing, a new semester has commenced, and the golf team will soon begin practice. Our senior is doing well and enjoying his life, and for that, I am thankful.

You can read more of Karen Gerstenberger's writing at and

Tuesday, February 9, 2010

Different. Not less.

"My name is Temple Grandin. I'm not like other people."

So begins HBO Films' presentation of Temple Grandin, depicting the early life of noted autistic writer, advocate and animal management scientist Temple Grandin. The film, starring Claire Danes in a remarkable and unselfconscious performance, premiered this weekend, after a great deal of anticipation and concern by special needs advocates. Dr. Grandin has been a source of enlightenment to countless families, for whom she has given a window into the worlds that their own autistic loved ones inhabit, and inspiration to even more autists who look to her as an example of how they might make their own way in an inexplicable world. Would the film do justice to her life?

I should start off by saying that I don't have a dog in this fight, not exactly. I hesitate to even wade into the often controversial and frequently confrontational world of autism parenting. My exposure to the world of autism has not been small; I speak with a great many parents who are interested or even using the same speech prosthesis technology that helps my own daughter. The same social and educational barriers that exist for my kid stand in the path of many autistic children as well, and our victories and theirs are tied together in very real ways.

But Schuyler is not autistic; she's not on the spectrum at all. Her disability is caused by a brain malformation that robs her of speech and hands her other difficulties as well, but it is not related to the mysterious, unexplained and unexplainable world of autism. Indeed, it was an unsatisfying misdiagnosis placing her on the spectrum that spurred her doctors and us to pursue further testing and led to the MRI that identified her monster, polymicrogyria.

So when I watched Temple Grandin, much of it felt familiar in ways that broke my oft-broken heart, but in other very real ways, I watched the story as an outsider. And yet, so much of the film rang true. From where I stand, admittedly outside the spectrum and the unique experiences of parents of autistic children, it felt like someone understood. Without gooey sentimentality and the usual "God's special little angels" approach that is all too familiar in this kind of film, Temple Grandin quite simply gets it right. In her portrayal of a brilliant person who doesn't quite grasp the social contexts in which she must function but who nevertheless finds her own path, Claire Danes gets it right, too.

My daughter doesn't feel the social anxieties that many autistic kids experience; in some ways, she is almost anti-autistic. She has difficulties fitting in sometimes, and her difficulties in communication have manifested themselves in a variety of developmental delays. But she is an intensely social animal, and for now, at the age of ten, she still easily charms the people around her. I don't know how long that social ease will last, and indeed she is already showing signs of a kind of self-awareness that I have been dreading since the day she was diagnosed almost seven years ago. For now, however, Schuyler is still a happy and outgoing child, even if much of the time she functions like an exchange student from another world.

In the film, and presumedly in real life, Temple Grandin is something of a weird person. And in her day-to-day existence in school and in the world, my daughter is a weird kid. In our own ways, a lot of us have felt weird at some stage of our lives, but for kids like ours, it's a feeling that doesn't just come from within, from their own insecurities. For them, weird comes from without. It's an evaluation, a judgment from a world that can be kind or cruel or indifferent. As parents, we are wounded, deeply wounded, by that judgment. We want nothing more than to push it away, to somehow ease our children into waters that are familiar to us and to other kids. But these aren't the waters in which our weird and wonderful children swim. And I think they know that, they recognize it on an instinctual level that we can never share.

The best that we can hope for is that our kids will find their own comfort level, and let their freak flags fly, as the saying goes. And when the rest of the world sees that flag, some people, the ones who really matter, will recognize it as the mark of something strange and beautiful and wholly unique.

I can tell you the moment in Temple Grandin when I felt tears in my eyes for the first (but not the last) time. Temple's mother, played by the amazing Julia Ormond, has brought her daughter to a boarding school where she believes that Temple might have a chance to be herself and possibly thrive. But as she is meeting with the admissions board, her daughter sits outside on a swing, spinning repeatedly and obliviously in a manner that will be all too familiar to many families of autists. When some passing kids make fun of Temple, her mother balks and tries to leave. The science teacher, Professor Carlock (David Strathairn), stops her and tries to convince her that contrary to the medical thinking of the time, he doesn't believe that she has failed as a mother. He thinks the school may provide the right environment for Temple.

Prof. Carlock: I know it's difficult when as parents we want our children to be everything we hope for them to be, and if they're not, we think it's our fault, and that there's never ever anybody out there who understands what we're going through. And it makes you feel alone, right? Mrs. Grandin, I'm not an admissions person. I just teach science. But I feel that this school might be the right place for your daughter. I'd love to have her here.

Mrs. Grandin: The doctors wanted me to institutionalize her. And I don't know, just dumping her at a boarding school, it just feels like another way to give her up.

Carlock: But it's not. It's just the first step in getting her out into the world. And I know you saw the children making fun of her, and you want to protect her.

Mrs. Grandin: Yes, of course I do.

Carlock: What parent doesn't want to? But at some point, she's going to hit life head on. Trust me, we know how different she is.

Mrs. Grandin: Different, not less.

Carlock: Different. But not less.

I don't think I have anything to add to that.

Robert Rummel-Hudson is the father ten-year-old Schuyler and the author of Schuyler's Monster: A Father's Journey with His Wordless Daughter (St. Martin's Press, 2008).  He is also a contributing essayist for My Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kids with Disabilities (PM Press, 2009). His work has appeared in Good Housekeeping and Wondertime.  Robert's adventures with Schuyler can also be found at his blog, Fighting Monsters with Rubber Swords.


Monday, February 8, 2010

Things are not always as they appear

Calvin is sitting across the table from me as I write today. He is having a Mom imposed day off from school because I felt as though he would not be able to keep it together and have a successful day if he went to school. Staying home means doing work in workbooks, it is not a free day but it is a day when he does not have to deal with bullying, frustrations, disappointments  and having his buttons pushed because others think that watching him explode is so much fun.

I have been warning his school all year that this would happen, that one day he would blow up and hurt another child. He needs structure, he needs adults to step in a help him when he is overwhelmed, he needs adults to see that it is going to happen and do something before it does. The staff at his school heard me but they were not listening. They did not believe me, they did not think that this little boy was capable of such things and because they refused to listen to me a child got hit with a chair on Friday.

They are listening now.

Sadly it is too little to late. Now that Calvin has raged at school he has nothing to lose, he has no reason to try to keep it together.  All  the other kids in the school will have a great time watching that kid with the short fuse blow his top when they tease him on the yard.  Kids can be mean, few kids understand what it is like to be different and even fewer know what it is like to be  in the situation my children are in.

The staff believe that he is in control when he blows, that he choosing to lose his temper. They do not realise that he reacting from a place of fear, a place that is deep within his memory that he not thinking about it but instead just trying to protect himself from the perceived threat. We all know that the other child who is teasing him is just doing it to see the show but Calvin doesn’t know that. It triggers a fight or flight reaction in him that is so deeply ingrained within his being that it is automatic.

He has this deeply ingrained reaction because at a very young age he learned that the only person he could depend on was himself, no one else could be trusted. Sometimes the big people in his world took care of him and sometimes they did not, sometimes the fed him, sometimes they comforted him and other times they just left him to cry. Left him to wonder why no one was meeting his needs, why his cries were unheard or ignored when he clearly needed something. His brain was affected by this neglect, his brain did not develop in the same way of that a child who is cared for and has their needs met lovingly.

Then other adults came into his world and moved him away, separated him from his sister and placed him a foster home and told him that he would be safe and taken care of here. He visited with his Mom sometimes and sometimes he went to visit and she did not show up reinforcing his belief that adults could not be trusted. He started to misbehave at school and in his foster home, he was punished and made to feel as though he was a bad boy. None of the adults in his world realised that his behaviour was speaking volumes about what had happened to him, he was telling them but they could not hear him because they did not really understand his language

This went on for 3 years before Calvin was told that he was going to be adopted and that there would be no more moving around. Calvin did not believe us when we told him we would love him forever, that we would always be there for him. Why should he believe us, adults are not to be trusted

Everyone told us he was a handful, he had a lot of behaviour issues, had been suspended numerous times, refused to use the bathroom, was overly affectionate and could not be trusted to be alone. We were not suprised by his behaviour, no wonder he acted like that, his life had been one traumatic event after another. By 8 years old this child had more trauma than many people have in a life time.  

We have worked really hard to teach Calvin that we will take care of him and meet his needs, that we will never leave him no matter what he does, that he can be angry and tell us that he hates us and that we will still love him.  He is starting to realise that we mean it, that as his parents we can be trusted. He does not trust us all the time, he is still working on that but he has come far in the last 18 months.

Even though he is starting to be able to stay regulated and in control at home it is hard for him to maintain that control when he is not with me. He uses me as his anchor, he knows that I will see when he is becoming disregulated and help him gain control by talking to him about what is going on. That is why school is so hard for him, there is no one to help keep him regulated because all the staff wait until the behaviour occurs rather than watching for the signs that the behaviour is coming.  Once he is disregulated he goes to that fear place in his memory and reacts from there, he does not stop to think, he just reacts because he is scared that no one will keep him safe and so he must keep himself safe at all costs.

This is attachment disorder, this is what happens when children are neglected and experience trauma. Calvin is not alone, there are many children who are just like Calvin.

I wish that the world understood attachment disorder. I wish that the world understood the profound effect that neglect that has on a child’s developing brain. I wish people would listen to those of us who have taken the time to learn about attachment disorder and choose to parent children who are affected by this preventable damage when we try to explain our children to them.

J. blogs at Stellar Parenting 101 where she talks about raising two wonderful boys and all the challenges that go along with being their mom.

Sunday, February 7, 2010


Late last spring our family entertained a house guest. Shelly was an Eastern Box Turtle which I rescued on my way home from an art festival. She was slowly making her way across Highway 76 in the northern Georgia mountains and was about to meet the fate that many female box turtles encounter that time of year as they return to their own birth home to lay eggs. For the record Shelly was a temporary guest - in fact later that week me and my daughter Jessie made sure she was enjoying her new digs near the creek behind our home.

It was interesting getting to know Shelly. My wife and I have always used opportunities like that to teach the kids about nature and the very cool critters that are our neighbors (including the giant black snake who has returned to live under our deck). Ironically it has been me to whom Shelly has had the most to say.

Getting me to slow down is like telling Jeff Gordan to hop in the Dupont Hendrick Pepsi Frito-Lay Quaker State National Guard Tylenol Chevrolet and turn a few laps at Daytona behind a horse and buggy. It very likely isn't going to happen. Just ask Joan who has watched me for 16 years get distracted by shiny objects, funny sounds, sharp pointy things, stuff that catches on fire, and those odd neighborly critters. But living with a child like Ben one has absolutely no choice but to slow things down if only to grasp the always changing situation at hand.

The memory of Shelly washed over me recently when I decided to embrace a new life of sobriety. That's another story reserved for our own blog but the primary advice from those that have success in AA? Take things one day at a time - try to concentrate on the moment in front of you. Otherwise life becomes too overwhelming and you'll end up defeated before the green flag waves. I should'nt think about the next time we are invited to a cocktail party because I have to retrain from having a drink while watching the Super Bowl tonight. We can't worry about Ben's next unexpected health issue because we need to concentrate on those things we do every day to keep him healthy. The point is that most of us are at our all-time worst when looking at the big picture too long. Fear, anxiety, anger, and resentment overwhelms us to the point that we become paralyzed.

Shelly's pretty cool with that advice she left with us because when rescued her concern was just getting across that road in one piece. Then perhaps it would be time to figure out dinner plans. After that maybe she'd think about where to close up shell for the night.

So after our reptile friend moved on, when I have needed some advice about slowing down, I've often looked toward my son for that encouragement. Even after a decade living with an exceptional child I always find it amazing how much I'm still learning from a kid who moves at a pace that only Shelly would appreciate.



Most the time Ben & Bennie discuss reptiles, sharp pointy things, shiny objects, and NASCAR racing at their blog, A Work of Art: Raising Our Exceptional Son.

Saturday, February 6, 2010

I Knew This Day Would Come... why was I so unprepared for it?  After all, M is six years old and his autism is more noticeable than ever.

Yet I was still sort of shocked when at the chiropractor's office a little boy began a series of questions that I hope I answered calmly, fairly, and in with my son's best interests at heart. 

We had walked into the waiting room where this boy was playing.  M plopped himself right on top of a segment of foam letters that the boy had just pieced together prompting the boy to yell, 'He's breaking my toy!'

I tried to steer away any further negativity by telling him that M just wanted to play with him.  (I wish!)  M began speaking in his gibberish, waving his conductor fingers in front of him, lips pursed, tongue out.  The boy looked at his mother and I and said what I've known someone would say at some point...

'What's WRONG with him?'

Alright, Deb.  Time to quickly get your wits about you.  Don't snap at this kid even if you'd really like to.  Use this as an opportunity to educate this boy. 

So I confidently responded that M has autism, which means that his brain works a little differently than his and mine do.  Oh, if only that could have been the end of it!  The boy quickly responded--not once, but twice--'He's WEIRD.'

It's worth noting here that though I had never met this child before, I had met his mother and exchanged a few emails with her about the state of children's services where we live.  This boy has been diagnosed with reactive detachment disorder.  Knowing this, I was fortunately armed with a few grains of salt to his questions and comments.  I try to live my 'new normal' life with the constant remembrance that you just don't ever know a person's full story.  However, a child whose questions seemed rude-bordering cruel, and most certainly lacking of compassion--might have been harder to answer with kindness and patience had I not known beforehand the hardships he, like my own son, encounters each day of his life.

I finally encouraged the boy to ask his questions directly to M and to even introduce himself to him.  I am very glad that I did this.  Even though M has no ability for conversation, it is becoming increasingly clear to us that our little guy hears and understands most everything.  After the boy told M his name, I asked M to repeat it.  He did--in his own speak--and I was so, so proud of him.  Unfortunately the boy immediately knocked him down again by saying, 'That didn't sound like my name at all.'  Sigh...

I felt a strong need to stay in the waiting room with this boy and my children despite the tough questions and comments that continued to arise.  His mother had slipped away in the middle of all this to be treated by the chiropractor.  As I find myself doing in so many aspects of M's life, I wrestled internally with staying for the boys' benefit and leaving for my son's.   Why was this so difficult for me?  It should be a no-brainer that what was important was how M felt.  I did finally decide that it was time for us to leave and that I had (hopefully) done my part in facilitating a healthy conversation.  I was ever grateful to the office receptionist who happened to swoop in at the perfect moment...when the boy finally asked me, 'Did God make him this way?'

It may be my job to advocate for my son and educate others (when necessary) about his autism.  It is NOT my job to talk about God and his hand in making my son who he is.

We left, and I spent the rest of the afternoon replaying and analyzing what was said.  But mostly, I wondered with a heavy heart if my sweet boy understood that this boy was talking about him. 

Oh, the mysteries of autism. 


Mama Deb writes at This Is My New Normal.