Sunday, January 31, 2010

Stepping into a larger version of yourself

One of the many gifts of The Nurtured Heart Approach (NHA) is that helped me redirect my focus to how Fluffy was demonstrating his greatness in the present moment.  How was he being successful right now. How he was embodying qualities that I value right now.

I can't say I do it perfectly but it's such a welcome relief when I do remember like the moment at the check-out counter when you frantically reach beneath the tissues and the gum and the hair elastics in the belly of your purse and finally find your wallet. Oh! I have what I need right here.

This past week, the goddesses over at Mondo Beyondo invited us to create a clearing, a space where something new can enter. This could be interpreted any number of ways from the very literal--clearing out a closet, dispensing with an old unloved piece of furniture, logging off-line for a week, to the more abstract--forgiving someone, postponing a decision. They also asked us to find an area where we could place the following items: a picture of someone that inspires, a candle, something from nature, and a note of permission from yourself to step more closely to your dreams.

I had created an alter at the beginning of this new year. I needed a place set aside for beingness--if you'll pardon my yoga speak--a place where I could invite myself to sit still, visualize, and steep in all that I love and appreciate about my life right now. A place where I could intentionally practice the NHA on myself. I noticed it had nearly everything that was suggested: heart-shaped rocks and a sprig of wild sage from nature, a picture of me when I was little and lacking in self-consciousness, candles, even something they didn't mention--a tibetan singing bowl that makes the most rich and resonant sounds. But no note of permission from myself. So I made one.

It reads: Now is the Time to be Risky.

It could read, Now is the Time to be Afraid, something a therapist said to me a few months ago. She was talking about appropriate fear, the fear that signals stepping out of one's comfort zone, into unchartered territory, maybe even into forbidden territory given the unspoken messages communicated by well-meaning but unconscious caregivers. I chose Risky because it conjures up leaps into the air and daring feats of courage and that, in and of itself, makes me feel more brave.

Acting was one of my young girl dreams. I graduated from an acting conservatory when I was 20 and soon after, moved to Manhattan to storm the stage but fear won out. Fear of failure, fear of success, fear of standing out, fear of not standing out, fear of being mediocre, fear of not knowing what the fuck I was doing, fear of fear of fear of fear of.

I didn't know it at the time. Fear is a shape shifter, often presenting as a simple matter of schedule, I'd love to do such and such but I'm just too busy. Or level-headedness, the voice of reason, maturation. Or distraction, doubt, procrastination. But I'm on to fear now.

A couple of months ago, I signed up for a workshop in how to write and perform your own solo show. It's in New York City. I pay a sitter a chunk to stay with Fluffy. I gas up the car, drive to the train, buy my tickets, stay overnight, return the next day. It all costs a gazillion dollars and takes over four hours of travel each way.

As I made my way to the first class I worried I'd stand out. I worried I'd be the oldest one coming from the farthest away. I worried it would make me look desperate. I'm happy to say that not only am I not the oldest one nor coming from farthest away but that I don't give a shit about any of that. I only care that I've been doing it, risking it, getting up in front of the class, even though my inner critic streams from my ears like a smoking genie from a lamp and tries to silence me.

Tomorrow is my last class. I have been having a ball. Even though I haven't been brilliant every minute. Far from it. Even though I've been nervous and a bit self-conscious. Even though I've wanted at times to bolt from the room. I say to myself, Kyra, look at what you're doing right now, right this minute. You're here. You're risking. It doesn't matter how it turns out. The power is in the present moment.

The power is in taking the risk itself.

There are times in the class when I feel good, calm, excited, inspired. And there are time when I feel the resistance taking hold, the tingling in my chest, the shortness of breath, the stiffening in muscles of my face. I hope I remember that the next time I ask Fluffy to stretch. It's easy to forget what might be surging through his body when what I ask of him doesn't trouble my body at all. It's easy to forget what it feels like when you are stepping into a larger version of yourself.

I may not have a clearer idea of what sort of solo show I'd like to write one day but I do have a much clearer picture of what courage feels like: Shaky. Raw. Exposed. Shy. Tender.

I don't take it lightly.

For anyone.

My Hope for Hopeful Parents...Is It Yours?

Can you believe it's been a year since Hopeful Parents started?

From the bottom of my heart, I thank all the writers who have helped create a vibrant community here: Bennie Waddell, Carrie Wilson Link, cms8741, Dawn Marie, Deborah Nickerson, Elizabeth Aquino, Ellen, Fiona Charles, Gwendomama, Heather I., Heather Schichtel, Insideout510, J., Jen M, Jenabur, Jennifer Dubowsky, L.A.c., Jennifer Gossett, Jess Wilson, Jessie M, Karen Gerstenberger, Kristen Isgro, Kyla, Kyra Anderson, Lauren Agoratus, Leah, Lisa Amos, Mama Deb, Mama Mara, MFA Mama, Michelle O'Neil, Mimi Smith, Misty Werne, Molly_G, Mrs. Darling, One Tired Mama, Rebekah Sprecher, Robert Rummel-Hudson, Scott Desgrosseilliers, Sheree Holbrook, Stephanie Ostermann, Stimey, T., Tanya Savko, The Accidental Caregiver, Therapy Doc, Torina, wrongshoes, and Anonymous.

In our first year...

  • over 50,000 people have come to the site,
  • viewed our pages over 113,00 times,
  • commented over 1,860 times, and
  • spent, on average, an amazing two minutes and fifty seconds interacting while they're here.

That means, when people come to our site, they come to stay. This tells me that we're making connections.

We also connect...

Our association of parents continues to grow; this is only the beginning.


When I started Hopeful Parents, it was never my intention for this association to be "mine." The intention was to build a community -- our community.

To that end, we have a big goal for 2010! As long as there is interest within our community -- and by interest, I mean people willing to volunteer -- my plan is to incorporate Hopeful Parents in the State of Illinois as a nonprofit organization and seek federal status as a 501(c)4.

Creating a nonprofit organization allows us to supplement our blog and community with real action -- advocating for our interests, increasing awareness, and potentially creating a revenue stream not only for the website but for other parents blogging about children with special needs. It allows me to shift "ownership" of Hopeful Parents to our collective group, so that together we can make decisions and launch activities that benefit our population. One person can't do this alone.

The first order of business is putting together the Board of Directors. In addition to an Executive Committee -- President, Treasurer, Secretary -- I'm also looking for people to fill board positions to spearhead Advocacy, Marketing, Content, and Membership. If you or someone you know would consider a board position, please let me know.

After we have established Hopeful Parents as a nonprofit organization, we can start advocating our interests on a national level to our representatives. Together, we will need to spend time crafting our message. Advocacy will NOT be partisan, but seek to push forward our interests regardless of our individual party affiliations. Here, more volunteer opportunities present themselves. As our advocacy program gels, there will be a call to action on this site and our other social networking sites asking for volunteers.

Which brings me to my next point -- Action! Today we're launching a new blog at Hopeful Parents called Action! The purpose is to engage our grassroots community to help when you can. It won't be updated daily, but instead as needed. Please be sure to bookmark or add it to your RSS feeder so that you receive the updates.

And with that, I give you the floor:

What do you think of establishing Hopeful Parents as a nonprofit organization?

Are you ready to become more actively involved?


You've heard my hope for Hopeful Parents.

What I want to know it yours?

Friday, January 29, 2010

The Homeschooling Bathroom Advantage

"Mommy, is Riley taking a long time in the bathroom part of her Asperger's?" -Seth 


In a recent post for The Homeschool Classroom, a blogger named Samantha discussed the pros and cons of homeschooling. It was a light piece in which her children mentioned being able to go to the bathroom, when they felt like it, as a big bonus. It was cute.

For us, it's more than cute. 

Riley can't go at school. She can't go in a stall, where other people are coming in and out. It isn't that she won't go. She can't. She is so busy covering her ears, worried about when the flush in the next toilet is going to happen. She is worried about how long it will take her to wipe. The cheap toilet paper breaks off every time you tug on a square, frustrating her to no end. She uses a lot and can never get enough of it. She freaks out about germs. Trying to hurry (being rushed is always a trigger)and dealing with it all, is too much.

If it is really bad, and she desperately has to go, she might decide to face her fears and try, but often when she gets in the stall she freezes. The pee won't come out.

I can't tell you how many times I have stood outside a locked stall, while she screams and cries. She is too big to want me in there with her. I try to talk her through it via the crack in the door. She won't unlock it. It's such a helpless feeling.  

So most of the time at school, she didn't bother to try. She'd go from 7:00AM until 3:30 without using the bathroom. 

If she had to poop? Forget it. She'd hold it and become more and more constipated, until we wound up with a situation so severe she often had to miss school because of it.

We made arrangements for her to use the private bathroom in the nurse's office if she needed it, but she got tired of the questions. Everyone thinking she was sick. Being different.

So while it was cute for the kids in the post mentioned above, to cite bathroom freedom as a bonus for homeschooling, for us it was a very real consideration when making our decision to keep Riley home.  

How can you focus if you have to go so bad you can't sit still? How can you learn?

"Yes, Seth."

The answer is yes.


Michelle O’Neil has contributed to A Cup of Comfort for Parents of Children with Autism, and Special Gifts: Women Writers on the Heartache, the Happiness and the Hope of Raising a Special Needs Child. She has written for Literary Mama, The Imperfect ParentAge of Autism, and Cool Cleveland. She has a seven year old son Seth, and a nine year old daughter Riley with Asperger’s. Michelle and her husband Todd began homeschooling Riley earlier this month.

Thursday, January 28, 2010

Love letter to a TV censor

Dear TLC Censor:

The other day, I was watching a show on The Learning Channel called Moving Up. It's that show where people move to a new house and remodel/redecorate it, then invite the former owners back to mercilessly trash their new design choices. It's catty, nasty stuff, and as your typical American viewer, of course I totally love it.

Anyway, that morning's episode featured a deliciously trashy, chain-smoking, f-bombing Jersey Shore-type couple. They were sniping at each other like something out of a bad Saturday Night Live skit. I imagine you must have contracted a terrible case of Carpal Tunnel Syndrome while trying to bleep out all of the foulness flying from their obnoxious mouths:

SHE: There's no [BLEEEEEEEEEEEEP] way you're gonna put that lavender [BLEEEEEEEEP] in my bedroom. It's [BLEEEEEEEEEEEP]!

HE: No, you're the [BLEEEEEEEEEP]. The black [BLEEEEEEP] paint is a [BLEEEEEEEP] nightmare!"

SHE: [BLEEEP] you, you [BLEEEEP]!


And so on. The stuff of Emmy Awards? Not so much. But if there were an award for excellence in censorship, it would definitely go to you.

I was astonished when I realized that one of the main words that you were bleeping out that morning was one I'd never seen censored before. In my community of special-needs parents, we call it the R-word (I won't write it here, but it rhymes with bee-lard).

Thank you so much for recognizing what so many of us already know: that the R-word is vulgar, cruel, unnecessary and truly obscene. Keep on bleeping!


A grateful special-needs mom 

Wednesday, January 27, 2010


Little drives me crazier than having a post written out in my head, and have it evaporate in the two hours between mental completion and actual typing. It's that "get 'em up, get 'em dressed, get 'em fed, get 'em outta the house" set of activities in the morning that just sucks the ol' brain dry.

The irony was that I wanted to write on focus.

Last night was parent teacher conferences. And I was going to vamp on that and the continuing struggles my oldest, twice-exceptional son has in school. I actually had most of a post written here, but had to rush out for a bit before I clicked "publish."

I do a lot of thinking in the car, especially when I'm alone. When I'm alone in the MomVan, it's delish. No radio, no bickering kids, just me and my thoughts. And I decided that more whining about my son and his educational situation...just wasn't right.

I know how blessed I am.

It's been a rough couple of months at home. We've taken A off his ADHD meds and haven't put him on another; the variety of side effects just haven't been worth it. So his focus is scattered, though improving. I found a local school that would be ideal for him and his the tune of $11,000 a year. The economy happened to look our way and realize, "I haven't smited you yet!" and then, you know, smote us. Our five year old, J, has taken up whining as his life's work and I'm starting to regret the last four years of speech therapy more than just a little. Life is moving at an ever-increasing sprint, and I'm falling over trying to keep up.

Yet I know how blessed I am.

I have a loving family, with sons who are truly best friends. I have a husband who works extremely hard so that I can stay home to support our boys (for the time being...if that school is to be a reality, a full-time job is in my future). I have a warm house, with internet access so I can whine to my friends on Facebook; food in the pantry; gas in the MomVan. We are safe and secure. No struggling to survive poverty or natural disasters or heartless dictators.

I know how blessed I am.

We have access, however ungodly expensive, to first-class medical care. Access to therapies to help my sons not just overcome their obstacles but to thrive. Access to healthy food and clean water. Clothes on our backs, shoes on our feet, books in our home. I have a lifestyle that a hundred years ago would have been considered magic.

Things suck right now, for a lot of people, and badly. Every day there is more bad news, on the television, from my friends. What is getting me through is that we're all in this together...we're all on this rock, spinning around the sun, together. Nothing is going to be perfect (and from a perfectionist, this is hard to admit), but things are going to get better. Perhaps not soon, but they will. I have so much in my life to be happy about, to be proud of, to love, despite the challenges that threaten to drag me down.

I know how blessed I am.


Jen also writes at Laughing at Chaos.

Tuesday, January 26, 2010

To label, or not to label

With the news last week, that we will be starting our journey with 4 Paws for Ability to get a service dog for Noel, I was at once elated, and surprisingly, terrified.


Well, the dog requires some heavy duty fundraising. Fundraising is not something that can be done quietly, in the privacy of your home. Fundraising will require us to introduce Noel to our community and explain his differences. And for some reason, that scares me.

I feel like it shouldn't. Like, perhaps the reason I am scared is because I am ashamed, although I am fairly sure that the reason I am scared is because I want to protect him. From hurt, from being judged, and from being labeled.

My mother is very concerned about labeling him, because I think she is worried that he will never escape from being the "kid with Asperger's" if we do.

But he will always be the kid with Asperger's. He has it. It is shaping who he is, in both positive and negative ways. We need the dog to help him with the negatives because they are such destructive forces in his life.

So we have to stick a label on him. One that I worry he will have to carry like a brand for the rest of his life. Try as I might, I can't will the label of Asperger's into a badge of honour, no matter how many times I pull out 'Albert Einstein probably had it!'.

The dog will make his life infinitely better. When I weigh that against the possibility of people who he doesn't know judging him and making assumptions about him, the dog wins. So a fundraising we will go...


Stephanie can be found at Robot Tea on all other days of the month

Sunday, January 24, 2010

I wish I could stop comparing my kids

My little girl, Sabrina, is learning how to swim. Every Saturday, we take her to a local Y for lessons and she kicks up a storm. She's getting pretty good.

I sit on the bleachers along with the other parents, sweating a little from the humidity and taking a rare few moments to sit and not do anything. My mind wanders and I mull over the leaps and bounds Sabrina has been making. She turns five this week and she's starting to spell and read words, find her way around the computer, and create the most beautiful drawings. 

I think about Max, my seven-year-old, who has cerebral palsy. He has been making progress, too. Like he is obsessed with the color purple and has been noticing it everywhere and saying "Ur-ul! Ur-ul!" It's just one of the ways he's getting more communicative. He can now spell "M-A-X" out loud. He's also using both hands more often (his left one is more functional—he typically neglects to use the right). But often, it feels like Max is treading water while Sabrina is plowing ahead.

I try not to compare my children yet inevitably, I do. And it is so unfair to Max, because he is not Sabrina. For one, the fact that he is making progress is pretty miraculous, considering the extent of his brain damage and what we were told at birth. And he has his superpowers: His brightness, alertness, curiosity and smarts are merits all his own. Not to mention the dimples and good hair.

I have come a long way from Max's early years, when I'd compare him to other kids on the playground and at birthday parties and end up coming home in tears. I no longer do that, though I still see him through the lens of his sister's accomplishments. Also unfair: I'm always holding Max up to Sabrina, never the opposite, though when I think about it she would be very lucky to have just an ounce of his good-natured ways. Max also has a sharper sense of humor. The other day we were at a local pub where they had this Simpsons video bowling game. At one point, Marge picks up the baby and rolls her down the lane like a bowling ball; the baby then crawls out of the machine. Well, Max noticed that detail and was cracking up. He has the most infectious laugh; it's hard not to join in. 

If I'm going to compare my kids, I'm going to at least make sure it goes both ways. That's not the best answer, but hey, it's progress. 

wondering when

My youngest, the Energizer Bunny, is once again having behavioral troubles at school.  Mind you, this is Kindergarten.  But for him, it follows a two year struggle with impulse control and aggressive behaviors in preschool that resulted in being kicked out of the school he'd attended since he was 5 months old.  And now, he's approaching age 6 and still exhibiting the aggressive behaviors that his teacher calls "very concerning."  Let me quote:  "I'm really concerned about his emotional health.........." 

So here's what I wonder, among other things:  when will the day arrive that I don't immediately break down in tears during these kind of conversations?  I went in last week to meet with his teacher, at her request, and got there about 30 minutes before meeting time.  I helped out with the kids in their "centers", as I've done before, and then the class left to go to art.  I was fine, absolutely fine, until the kids left and the teacher said those words, then the water works opened up. 

Energizer has an ADHD diagnosis, which is kind of a double-edged sword nowadays.  It's so commonplace now, it's almost as if the label has lost its impact in the minds of many people.  "Oh, ADHD...........yep, everybody's got it."  Ours is the severe variety, and I never could have imagined what severe ADHD was really like before living with it in my house.  Medication starting at age 4, and still he has impulse control issues so serious that he puts his hands on the necks of classmates and tries to choke them.  What brings on these outbursts?  Such life-and-death horrors as having one friend tell him that he can't be friends with another. 

So I cried, and I listened, and I talked, and we decided to get the guidance department involved in some counseling for him.  I have to do everything in my power to get past my own emotional hangups that will hold me back from getting Energizer the help he needs.  You know....the nagging worries of having done something wrong in raising him, or the guilt over his micropreemie 27-weeker birth and the long-term repercussions of that.  I mean, come on.......if your 5 year old needs emotional counseling, there's a problem, right?  You feel like everyone's judging, everyone's questioning.  If they only knew the battles we fight on a daily basis, the constant balancing act that's required just to keep him (and the family) functioning with our heads above water.  And the teacher is sweet, and caring, and great, but you know she's got to think "whose 5 year old explodes with so much anger that they choke another kid?  And HOW did it get to this point?" 

I wish I knew...........

Saturday, January 23, 2010

Two Sides To Every Story

Yesterday afternoon I sat in a meeting with a behavior specialist, a case manager, day support staff and group home staff – all to discuss my daughter, Jessica and her ongoing and increasing aggressive and negative behaviors.

Jessica’s negative and aggressive behaviors are not new. Every since I adopted her eight years ago, she has displayed outbursts of rage and aggression. She is diagnosed with reactive attachment disorder, a disorder that is common in children who have spent many years in foster care. While in foster care for 9 years, she learned that trusting and attaching to adults more often than not resulted in emotional and physical pain. Her response to that was to refuse to attach ever again. Whenever another person starts to get too close to Jessica, for instance a permanent ‘Mom’, she will rebel as hard as she can. And, it’s not only Mom. She ‘protects’ herself from letting anyone get too close, and to do that, she feels she must control every relationship and most situations. Some of the more common symptoms of reactive attachment disorder are:

Lack of Conscience Development.
Superficially Charming.
Lack of Eye Contact (except when lying).
Inability to give and Receive Affection.
Extreme Control Issues.
Destructive to Self, Others, Animals and Property.
No Impulse Control.
Unusual Eating Patterns (hoarding, gorging, or refusal to eat).
Unsuccessful Peer Relationships.
Incessant Chatter in Order to Control.
Very Demanding.
Unusual speech patterns, mumbling, robotic speech, talking very softly except when raging.

Unfortunately Jessica displays every one of them, but only some of the time. When Jessica is not in the middle of a rage, she is the sweetest, most loving, well-mannered child you could ever meet. She is helpful and doesn’t complain. She smiles and makes everyone around her smile. She seems to be one of the happiest people in the world – until….

The ‘until’ is what our group yesterday was trying to figure out. What are the triggers that send Jessica over the edge and into an abyss of aggression? And once triggered, what makes her voice change – actually change and get several octaves lower – her exorcist voice as we call it? What makes her much stronger than normal, and why must she physically hurt someone before she can become ‘Sweet Jessica’ again?

Living through these episodes and living with Jessica, never knowing what to expect is very difficult. Everyone around her must be constantly on guard, and that is exhausting. Every precaution must be taken to ensure she doesn’t have access to something that could be used as a weapon, and always having to think along those lines does not make for a very happy household. But, it also doesn’t make for a very happy Jessica, and that is the main reason we need to figure this out.

It did make me sad yesterday to spend an hour and a half painting a picture of a very troubled child, a child who routinely and significantly hurts others. I want to work together with this group to help Jessica, but it’s very important to me that during the process we don’t lose sight of the positive things about her. I don’t want her defined only by those moments of rage. I truly believe that in her heart, she is a loving person who only wants love in return.

Recovery from the trauma symptoms of reactive attachment disorder more often than not isn’t successful. Like many mental illnesses, people aren’t cured, but they do learn to cope. In addition to Jessica’s mental illness, she is also diagnosed with a cognitive disability. That cognitive disability makes it difficult to learn new coping skills, but I refuse to give up. I will continue to try, and I will insist that the people who provide support to her continue to try.

The abandonment and the abuse Jessica suffered before joining my family were not things she chose. Adults, adults in positions of responsibility, used their power for evil. Jessica was the unwitting victim, and will suffer for the rest of her life as a result. I can’t do anything about what happened in her past, but I can ensure that in the future she is given the support and chances she deserves. She is my daughter, and I will take care of her.

Friday, January 22, 2010

The Journey: Part I

It's been almost 2 months since J passed away.  At first, we all went through shock: my older sons tried to find humorous ways of coping.  G has spent a lot of time saying "bye, bye" through dolls and toys that he'll sit alone and play with, intently, on the floor.  G knows his Dad isn't coming back, but he's naturally confused as to why.

At one point, we were at the apartment of some friends who we used to visit.  Without J there, G turned around to the father of the family and said, "Bye, bye, Daddy!".  My heart's already broken, but that just put an extra crack along the side.  In some ways, G is very expressive with his grief, autism or no autism.  For a 6 year old, he has some amazing coping mechanisms.  I'm very proud of all 3 boys for how they've handled themselves.

Another nifty item that's helping us through: a child-care giver with training in ABA and RDI.  C is the most non-complicated, caring, Iraqi-war veteran-training-to-be-an-elementary-school-teacher I could imagine.  G bonded with her almost immediately, so C got right in there and started teaching him.  Although we've been transitioning part-time, I will start traveling for work at the beginning of February and C will come on full-time, including some nights.  I can only hope that G's progress (and he continues to make progress, circumventing any downward spirals he may have encountered because of the trauma) stays on course through all of the changes we as a family are having to make.

As for me, I'm still on the sidelines, focused on the boys, keeping it together and just hoping, hoping, hoping.

Thursday, January 21, 2010

A Repost

I just logged on to read Hopeful Parents and realized that today was my day to post! And now it's after nine o'clock at night on the west coast which means the day is turning on the east, and I have nothing to post. So, what I'm going to do is post one of my favorite posts from my blog. I realized when I read it tonight that one of the things about living with my daughter, Sophie, is the timelessness of it all. The fact that her disability, the ups and downs of her seizures, her slow development that moves forward incrementally and brings such joy is almost timeless. What was true last year is also true of this year. What was true five years ago is sometimes true now. I suppose this could be depressing, but in fact, it's not, and I'm not sure why. I think the word timeless, with its suggestion of eternity, has as its base, love. The post is from the fall of 2008, so it's well over a year old, but I could have written it yesterday.

Sophie has been having a lot of ups and downs these days, more downs than ups, actually. And I've been so busy with the boys and back to school and then this Sarah Palin stuff really knocked me out. And I still have a bit of an addiction for the word games on Facebook and reading other peoples' blogs and, well, the list just keeps going on. Oh, and I'm running for Vice-President, too. So, I'm busy. Really busy.

My friends and family ask me, "How is Sophie doing these days?" And I usually say, "She's all right. She has her ups and downs." I don't bother to tell them that she's mostly down right now because it's actually gotten to be routine. The down stuff. If I tell them, I'd also have to explain things and maybe help them to feel better. 

Instead, I look at the moon, a huge, pale and glowing disk in the sky these last couple of nights and think it's really so close. It is what it is.

It is what it is.

There's a blanket of tiny yellow flowers lying on our front lawn. I can never remember the name of the tree that is shedding these tiny flowers, but we can't remember another fall where they were quite so profuse. We all trail them in the house and they're stuck in Sophie's carpet. I pick them out of my hair and sweep them from the bathroom rug. In the morning, when we drive off to school, they fly off the windshield and past the back windows, making the boys shout with excitement. "Yellow snow!" they exclaim.

When Sophie came home today, we sat on the grass for a few minutes and even lay back under the tree. The yellow flowers kept drifting down and around, on top of us. We got up and went for a walk around the block, and when we got back to the house, Sophie was very tired. I put some music on in her room, a CD of songs that they play in my kundalini yoga class, and Sophie lay down on her bed. I was going to leave her and go do some busy work, but instead I lay down next to her and held her hand. My palm was against hers, dry and warm and we both looked out the window at the palm trees swaying in the back yard. Snatam Kaur
 sang in her ethereal voice and I slowed my breathing, waiting for Sophie's own.

I wondered whether meditation could fill up the room, whether my mindful breathing could affect hers. I wondered whether she sensed my presence and whether our consciousness was linked in a way that was wordless. I thought of the green tree and the yellow flowers and the blanket over the green grass. It was all good.

Elizabeth tries to write regularly at a moon, worn as if it had been a shell.

Tuesday, January 19, 2010

What We Know


Love, the simplicity of it

At first, that is all we know

When our children enter our lives

Some of us learn early on

That things will be different

That our lives will take an unexpected turn

Some will find out later

That we must accept a new persona

And ask questions without answers, such as


But some of our questions will be answered

In time

We will come to know

More about ourselves

Than we ever expected to

We know that we are vulnerable

No matter how many well-wishers

Revere our strength

We know how hard it really is

Love, the complexity of it

We know

That there aren’t any instruction books

Yet we keep reading them

We acclimate to our reality the best we can

And when we think of our children’s futures

Ultimately we will come to realize that

So much of what we know

Is what we don’t know

And we learn to live with that

Through it all, we come back to the one constant

That keeps us moving forward

When everything else is stripped away

The reason why we have been here all along

Why we do what we do

How we know

What we know

Love, the simplicity of it


                                     Tanya writes TeenAutism

In Which Connor Isn't Special And I'm Fine With It

Please forgive me if you've already read this post on my blog.  Normally I don't do this, but I received such a strong reaction to this post earlier in the week that I thought it would be worth repeating over here. 

I was filling out a questionnairetoday; Connor has been selected for an award given out by the military hospital every year, and so we were to write a bit about him and send in some pictures to be used in the ceremony. Everything was going along swimmingly until I got to this question:

"Knowing that you are Mom and Dad, we would like to know from your perspective what makes your child special to you and your family."

And it was there that things screeched to a halt. I couldn't figure out how to answer this question, and I was surprised by my strong negative reaction to it. It's certainly a totally innocent query-- we were probably just supposed to list some of Connor's positive traits and move on. But it was that word "special" that was sticking in my craw.

While I say that Connor has special needs, as that seems to be the most PC term, and I love him deeply and fiercely, do I think of him as special? I might get a little flack for this one, but oh well.

No. No I don't.

He's not a saint or an angel or some sort of pillar of society. He's an ordinary little boy who happens to have a lot of challenges to deal with on a daily basis. While I know he's not ever going to be "ordinary" in the conventional sense-- he'll always be set apart by his physical and cognitive disabilities-- I really, really wish that wasn't the case. I wish that he could be viewed by the world outside our little family as simply a person, no better or worse than any other, and not as a case study or someone to be pitied or babied or scorned or idolized, depending on who's looking at him.

This is probably such a sticking point for me because we run into a whole lot of folks who tell Jeremy and me that we are special people for having Connor. And we're not. We're totally ordinary, normal parents who are muddling through raising a child and figuring it out as we go along, just like everyone else. I don't like being thought of as some sort of extraordinary person because it implies that only extraordinary people can raise children with disabilities. And that's not true; I firmly believe that anyone who would be a good parent to any child can be a good parent to a child with disabilities. To my mind, being special means being set apart. It implies an us and a them. And we don't want that, not for ourselves or for Connor.

It took me a long time to compose an answer-- I didn't want to turn Connor's award into my own oversensitive personal rant, and so it took me a while to figure out what I wanted to say. Tell me what you think about it. Here's what I ended up with:

"What a difficult question to answer! Certainly Connor is special from a medical perspective; he’s the only known case in the world with his specific genetic condition. But here’s the deal—despite the fact that his medical conditions permeate almost every aspect of our lives, we think of them as relatively unimportant. Connor has a variety of conditions that are part of him, just as he has blond hair and green eyes. They don’t define who he is.

"We could tell you about his bubbly, sweet personality, his great passion for music, and his easy acceptance of the hand that life has dealt him. We could mention his unmitigated joy in making new discoveries, his silly sense of humor, and the stubborn streak a mile wide he inherited from both sides of the family. We could talk to you about his bravery in the face of numerous emergency room visits, hospital stays, and painful medical procedures, his gentle touch with animals, and the astonishing beauty of his smile.

"But ultimately I think what makes him special to us is what makes any child special to a parent. He is our son, an ordinary person placed in extraordinary circumstances, who, like all of us, is doing his best to make the most out of what he’s been blessed with. He is made special by how very ordinary he is despite all of the challenges he is facing. We couldn’t possibly ask for more."


You can find Jess over at Connor's Song.                    

Sunday, January 17, 2010


I am a teacher.

It’s all I ever wanted to be and all I ever considered being.  And so I trained and became a teacher, a damn good one, in fact. Taught blended classes and within the first three years of teaching I’d taught grades 3-8. And so it went, teaching, teaching, teaching and as all good teachers know, learning, learning, learning.

Had my daughter and dropped down to two days a week teaching Talented and Gifted children, which, as deserving as that program is, is ridiculously named because all children are talented, all children are gifted, but apparently our world loves labels and acronyms, standardized tests and categories to point out all the ways we are, or are not, typical, so we can check off the right boxes and keep things all neat and tidy.

When my son was born I dropped down to just one day a week, in fact going back just six weeks after he was born, and frankly, loving every minute of my escape from his crying and incessant needs. Pushing up a chair against a closet door to assure nobody came in while pumping milk, was a piece of cake and a fraction of the stress that staying at home with him was. And so for a few years, three to be exact, I kept working one day a week and that day sustained me.

Then my son’s needs became even greater and his therapies so all consuming that even that one day away was too big a tax on his caregivers, and so I quit.

And while I haven’t missed the bureaucracy, the endless work, or the staff meetings, I’ve missed teaching. I’ve missed the high of making a difference in tangible ways. I’ve missed working with others. I’ve missed the social piece. I’ve missed it.

A couple of weeks ago I started teaching again. Another friend, also a former classroom teacher, and I began teaching memoir writing both on-line and in-person. We’ve each put about a million hours into the classes already, and our hourly income now hovers around $1.50, but it’s exhilarating. And the best part about it? It has nothing to do with special needs. Nothing. My mind is occupied hours and hours a day about something else. It feels like a brain vacation.

Today we celebrate Martin Luther King, Jr.’s birthday. He had a dream. I have one, too, and now I’m living it.

I am a teacher.

welcome to the club


Last May, a friend of mine was desperately searching for answers. Despite perfect hearing, her baby girl wasn't responding to her name. Despite seemingly typical physical function, she wasn't pointing or gesturing. Babble was minimal. Actual words were non-existent. She knew that something wasn't right. She was terrified. 

It was a terror I knew well. It was that awful, combustible cocktail of paralyzing rage wrapped in the frustration of impotence - curled inside an impenetrable wall of abject fear. I knew it because I'd lived in it.

I wrote to her. That's what I do - I write. I put it on my blog - because that's where I write. 

I wrote about fear and pain. I wrote about doubt and frustration. I wrote about confusion and seemingly impossible learning curves. I wrote about feeling completely overwhelmed.

I wrote about faith. I wrote about progress. I wrote about love. I wrote about mothers' hearts and their ability to stretch beyond their imagined limits. I wrote about conviction and about finding a voice. I wrote about gifts - precious, life-altering gifts. I wrote about compassion. 

She didn't read the letter then. She wasn't ready. I understood. Because I remembered that too. That feeling that the slightest word of understanding might shatter my carefully constructed and desperately fragile facade.

I thought I was writing about autism. I thought I was writing about a journey specific to those of us with children on the spectrum. I thought I was writing to one person.

It turned out that I wasn't.

According to my stat counter, just shy of five thousand people have read that letter since May. It has made its way around the world and back. Links came in from parenting forums, on-line support groups and every corner of the special needs community. 

But there was one link in particular - one conversation - one moment - that I will never, ever forget.

I found it fascinating to track the letter's journey around the Internet, so every few days I would check to see who was linking in. The first link I clicked one morning took me to a forum for new parents of children with Down Syndrome. I wondered if perhaps someone there also had a child with autism. Why else would the letter be there? But these were newborns. It didn't make sense. 

I poked around a little bit, looking for the connection. What I saw took my breath away. 

A woman had written in to the group desperate for support. She was scared. She was pregnant and had just found out that the baby she was carrying had Down Syndrome. She didn't know where to turn or what to do. She had stumbled upon the forum and hoped someone might be there to talk to her - to offer some hope for her, for her baby, for her future. 

The first response to her was a link to the letter that I'd written to my friend. The one supposedly about autism. "You need to read this," said the response. "It says it all. There's hope."

I read back over the letter. The word 'autism' isn't in it. Not once. Then again, I'm not sure it would have mattered either way. Because, as I learned that day, while the specifics of each of our situations may be unique, there are commonalities in our journeys that bring us together. 

We come here to Hopeful Parents to share our stories. To learn from each other, to educate each other, to support one another. And we come here to see ourselves reflected back in the experiences of others.

I am still surprised when I find a piece of myself in posts that should be so foreign to my experience, but it happens EVERY time I come here.

I do not have a child who is medically fragile or one who is explosive or violent. I have never had to face being told that my child's life expectancy is short. I don't have a child with a physical disability. I have never suffered the unfathomable loss of a child. 

But I find myself in each and every one of your stories. And perhaps in some small way you might see just a little bit of yourself in mine. 

Keep writing - please. Keep sharing the bits and pieces of your journeys and building empathy one post at a time. You never know who is out there in the ether - looking for understanding, desperate for solidarity, seeing themselves reflected back in your words, and finding HOPE.

Read the letter here. 


  Jess can be found at Diary of a Mom





Saturday, January 16, 2010


The word trouble was not part of the narrative, but that’s the word that came to mind when I read what unfolded during circle time.  I have mentioned Addie’s home/school communication binder in the past, what a critical tool it is in my understanding of her progress, setbacks, victories and challenges at school.  It’s also my window into just what inclusion means at her school as she spends full days in a senior kindergarten classroom.

On Wednesday I cracked open the binder as Addie played outside in the snow.  Actually, as she munched on all the snow she could scoop up, is probably a more accurate description.  The first category on the daily sheet is circle time.   Wednesday’s entry for circle time sent the cartoon balloon above my head, the one that said “trouble,” in bendy bold letters.  My cartoon face below the word, though, had no down-tipped eyebrows, no pinched lips of disapproval, not even wide-eyed worry – none of the things you’d imagine at the source of the “trouble” bubble.  Cartoon me, however, sported googly round eyes, distended with the paradoxical combination of hunger and satiation in them as seen on, say, Scooby Doo, for example, when an impossibly high and abundant club sandwich wafts into his olfactory radius.  Add to the bulging eyes a half smile of knowing.  He’s gonna get the sandwich and is already relishing just the thought of it.

I even said my single line out loud.  Trouble.  I was calling her by a new name, making sure it fit.  It did and I liked it. Saying it out loud felt similar to that sort of fake exasperated, but smiling tone we parents use when we talk about what clever things our kids say, how busy our kids are, how much they read, what play they are in, what scholarships they got, how they are doing in college, how many kids they have, what company they started…. We hold pride at bay by figuratively dangling the facts of their greatness between finger and thumb, removing it from ourselves in false objectivity.  We are never believed in this – the more desperate we try not to sound impressed by our own offspring, the more our glory is revealed.  I said it again, feeling my own sly smirk, “Trouble."

I wasn’t sure who I was going to tell first.  My husband was out of town for work and Addie's sister, who would completely get it, was studying with a friend. I have certain friends who could appreciate this more than others, as it would resonate with a few.  But then again, it meant so much to me, maybe grandmas should know first, like when first steps are taken, front teeth are lost, engagements are made, promotions awarded.  I decided just to go ahead and make technology my friend again by shouting it out electronically in all directions.  Thus, this story is a dead horse to all that surround me.

But I tell it again.

Addie got in trouble at circle time.  She and a friend were talking when they weren’t supposed to.  They got a warning, but chose to continue their conversation in which her friend asked various questions about winter break and Addie replied with details.  Ultimately, they had to be separated to different carpet squares for the remainder of group time.

Addie is functionally nonverbal and intellectually original.  She uses sign and a dynamic display communication device to speak. To my knowledge, this was among the first peer conversations at school not only not facilitated by a teacher, therapist or paraprofessional, but also among the first to occur to the indignation of all of the above.  A natural, collaborative boundary-bender in a K5 classroom, addressed with a natural corrective action for both rule-breakers.

If the word were part of my lexicon, I might even venture that it was typical.

The sauce of meaning I drench this morsel in: Addie buys into her device and is not just using it to please adults with agendas.  Her friends buy into her device as her voice.  Her friends want to know more about her and are not afraid to ask.  Addie is confident that she has interesting things to say. She is a full member of the community in her classroom, accountable to the same rules, subject to the same corrections, eligible for the same relationships, capable of the same progress, expected to contribute her talents like everybody else.  All of that stacks up to a fragrant and promising tower of “inclusive thinking comes naturally where I drop Addie off every day.”

I got my impossibly high club sandwich right in front of me.

More trouble at: Farmer John Cheese and Other Joy

Friday, January 15, 2010

Sometimes It's Lonely

I feel like I'm alone.

I have three kids. I have a husband. I have a caring extended family. I have real life friends and I have friends who live inside my computer. But there are days when I feel like I am sinking and I am all alone.

Way back when I started to suspect that Jack, my middle child, was autistic, I had to walk that road alone. My husband was slow to come around. I had friends and teachers tell me to my face that I was wrong, and, in a couple of memorable examples, crazy for thinking that. I had friends who thought they were making me feel better by dismissing my concerns. "Jack? No, Jack couldn't possibly be autistic."

It was lonely.

Now Jack has a diagnosis and a special education team. My husband, family, and friends all agree that Jack has autism. My friends, online and off, cheer us on when something good happens, and prop us up when something bad happens. But still, sometimes I feel like I am sinking and I am all alone.

It can be lonely.

I spend so much of my life reading and learning about autism. I try to figure out what will work for Jack and what will not. I spend hours every afternoon working, cajoling, and pleading with Jack to get him to do his homework. I drive him 45 minutes each way to a half-hour therapy session each week. I research therapies and brainstorm ways of doing things. I hunt down providers and doctors whom I trust and can afford. I take the brunt of my other kids' frustrations with being witness to or passengers on this same ride. My husband, although intuitively good with all my kids, has never read a parenting book or an autism book. Sometimes I feel like I'm sinking and I am all alone.

It is lonely.

I am so grateful for my support system. I can't imagine what my life would be like without it. And even though parenting an autistic child is hard, I wouldn't change it—or him—for anything. But during the dark times when I don't know what to do and when I don't feel like anyone with the power and ability to make a positive change for Jack is willing to do so, none of it seems to matter.

That's when I feel like I am sinking and I am all alone.

Stimey blogs at Stimeyland (and is usually waaaaayyy cheerier than she is today).

Thursday, January 14, 2010

Feeling Guilty for Only Grumbling

My son has a bruise on his nose. A bruise and a scratch. The bruise is new. The scratch is at least a week old.

When I first noticed the scratch, I asked him what happened. He said, "I don't want to talk about it." That's code for: I did something I wasn't supposed to do and got hurt.

I respected his wishes and didn't ask any more.

Tonight, after I gave him a bath, I noticed the bruise on his nose. It's not black-and-blue, but faintly reddened and blends into his dark brown skin. I asked him what happened and he started to get angry, "[The bus aide] pinched my nose!"

WHAT? The bus aide? The person who's supposed to be keeping him safe on the bus pinched his nose?

I'm going to interrupt myself here to note that today's not my assigned day to post at Hopeful Parents, but I couldn't resist after this incident tonight. I need and want to vent to other parents who understand. Since yesterday's writer missed, I'm figuring this is okay with everyone.


The bus aide pinched his nose. And the scratch? The bus aide did that, too.

What's weird for me right now is that while I'm able to use italics and caps like nobody's business in this post, I'm having a hard time feeling really angry and upset. It seems like I should be flying off the handle and figuring out exactly how I'm going to make sure everybody knows not to mess with my son again. But honestly? I'm only annoyed. And I'm feeling guilty with myself that I'm not freaking livid. Maybe if I type it in all caps -- FREAKING LIVID!!!!! -- that would help.


And now for some history. We adopted my son as an infant. He grew to have major behavioral issues -- so bad that by the time he was four, he had been removed from two schools. One of the schools was a therapeutic school designed for kids like him. He was asked to leave because he was a danger to himself and others. He's been hospitalized in the "psych ward" twice. And he's only five. Yes, five.

In the past, he's been violent, raging, aggressive. He's broken two toilets in our house, cracked a car seat. And by car seat, I mean the actual seat that comes with the car. The seat that's supposed to protect passengers in a car accident. Yep, my son cracked it using only the power of his legs. He's damaged nearly every wall in the house by throwing objects at them while in an utter rage. He's hurt my husband and I to the point where we stopped noticing all the scabs and bruises on our own arms, as though a bunch of superficial wounds were just part of the normal back-drop of everyday life around here.

Today, things are much better. But much better doesn't mean "normal." In fact, just yesterday as I was leaving the hospital with my son, a security guard -- the kind with guns -- asked me if I needed help with him. So, yeah. Things are somewhere between not scratched up every day, but nowhere near appropriate.

When I tell the story -- and I mean really tell the story -- about our family and life with my son during his particularly rage-filled fourth year, a common response I hear is "There's a reason God gave him to you." (Whenever I hear this, I wonder if people would say this to parents who didn't adopt their child. But that's another beef for a different day.)

I don't know if I believe that God gave him to us or that there was some pre-ordained destiny that brought us together, but I have thought that if my son were placed in any other household, he might have been dead. It's plausible that other parents who may not have the patience that my husband and I have would have beaten my son to death. Of course, that would be worst case scenario. Or maybe it's the thought that helped me feel better about myself during one hell of a year.

Regardless, what I learned after being beaten by my son nearly daily for months and months is that humans are animals. We have animal instincts. When we are attacked, our instinct is to attack back. It takes a lot of fortitude, strength of character, and personal restraint not to lash back at someone who has clawed at your mouth so hard that blood drips from four deep scratches finger-length apart.

Which brings me back to his nose. It is bruised and scratched. His bus aide did it. And tomorrow, I'm going to drive my son to school and get the aide fired. I'm sure they'll fire him for this, right? I mean, you can't harm a child! (Actually, I'm not that mad. I should have used a period on that sentence. But it seems like I should use an exclamation point, because I feel like I should be raising hell. But let's face it, the dude's going to get fired whether or not I'm feeling particularly heated.) If the school balks, the I'll report the aide to the department of children and family services, and I'll report the school to the department of specialized services. And if that doesn't work, I'll send the pictures I've taken to my friend who runs a PR firm and get this story on the news. It won't go that far. I am confident the school will do the right thing.

The bottom line is that I know what happens next, and know how to escalate the situation if I have to. I'm annoyed that I have to do any of it. And I'm feeling guilty for only feeling annoyed and not FREAKING PISSED.

Nope...still not pissed.

Puberty... A blessing or a curse?


Ricky hadn't grown significantly in two years when I took him to the endocrinologist a while back.  He also showed no signs of puberty -- the embarrassing ones or non-embarrassing ones.

Some kids with cystic fibrosis go through puberty late and many of them end up being a little shorter than their contemporaries.  But because Ricky's lung disease and nutrition were not significantly poor, the doctor did not thing that the CF was the problem.  She predicted he'd go into puberty by the time he was 14, and if he didn't we'd look at interventions.  His blood tests came back normal, though some were close to abnormal.  "Watch and wait," the doctor said.

Within the past six months, Ricky has turned 14 and grown a bit.  His voice hasn't deepend, but he's growing.  And you know how I know he's entered puberty?

Some of you won't be surprised at all.

The attitude!  Big sighs, rolling of eyes, ignoring me when I ask him to do something, stomping off into the other room when he's angry.  Oh yeah.  He's really a teenager now.  And boy am I in trouble.  We still have years of this to go.

On his medications for bipolar disorder, Ricky's mood is usually fairly even.  But this teenager stuff really throws that off.  I mean, he doesn't lose control, but this is something we have to deal with without meds.  That's unexplored territory for me!

So this presents a bit of a quandary for me, one I posted to Twitter/Facebook when it hit me:  Good news!  Ricky's in puberty!  But on the other hand, bad news!  Ricky's in puberty!  Because of course, while I'm glad that he's... well... Becoming a man and not going to lag as far behind as some boys with CF... I'm also frightened of this teenager stuff.  And teenager stuff plus bipolar disorder?  gulp

I'm sure we'll survive it, just like we have survived much more difficult things.  But if anyone has any advice for me, I'd love to see it!

Rebekah blogs at story of a boy.

Tuesday, January 12, 2010

Trying to stay "Hopeful"

Have you ever seen that show called Wipeout? The contestants are wearing helmets and knee pads and have to navigate through a series of obstacles that threaten to throw them 15 feet down into a pool of water? Oh- and they're shot out of a cannon into the water and have to climb up and out just in order to start the course.

The first time I watched that show I laughed till I cried. In subsequent viewings, I howled at the hilarity of it all; it just couldn't lose it's humor for me. Then last night it occurred to me that this show is a perfect metaphor for my life (at the moment), and all of a sudden it was no longer funny.

I've had the t.v. on lately just to serve as background noise. My son has been home from school ever since the holiday break and since he is not much of a talker (and can't hear the tv anyway), I've relied on the sounds of the t.v. for a little company. You wouldn't believe how often during the day one hears the phrase "on your side". Whether it be a news program, a law firm commercial, or an add for a medication, that phrase is being said all day long. It's enough to really make you paranoid - everyone else must not be on my side! They're all against me!

I've been feeling like I'm in battle mode for far too long, so maybe I'm just a little oversensitive to this message. Either way, I have turned off the t.v. and turned on the cd player. There's no sense in doing anything, no matter how benign it may seem, that encourages my tendency to worry or feel a sense of self pity.

I still have high hopes for the new year, but it's getting off to a really lousy start. 

What do you guys do to feel better? When you're feeling stuck in the muck of it all, is there anything that you have found to be a good diversion? I'm all ears. 

Monday, January 11, 2010

Post-Holiday 2010 Musings

At the end of Thanksgiving vacation, I was weary from travel and a week-long holiday gathering with the in-laws.  It was the first time my daughters were meeting their aunties, and while it was a nice visit, we were ready to be home.  Just as the plane was landing in our home state of Vermont, a stranger across the aisle made a comment about the little child I was holding against my chest.  It’s one of those stock comments that strangers make often when they see Sylvie—that she looks tired.  But Sylvie has a rare and degenerative neurological disorder that has left her hypotonic, nonverbal, and unable to hold her head up.  She has a cherub face, and most of the times her eyes are wide open and clear. But if you don’t know this, I suppose it’s understandable that you think my little child is tired.  But on this particular trip, after traveling from Florida to Vermont with my family, I just was too tired to let the comment go and smile. Instead, I said to the horror of the woman across from me, “No, she’s not tired.  My daughter is terminally ill.”  It was not necessarily a highlight of my parenting journey, but sometimes I just need to voice the daily reality I am faced with. And sometimes those realities do not include niceties. The woman tried to apologize and tell us how lucky our daughter was to have us as (not that she knows us from a serial killer), but her embarrassment and apologies were not of interest to me at the moment. I just wanted to get my girls home and sleep in our own beds again. 

This post-Thanksgiving interaction sort of threw me into a pre-Christmas funk.  My twin daughters are going to turn four years old at the end of January 2010.  With November came a flood of memories of being pregnant with them—so full with babies, I rarely saw my knees nor could I fully enjoy the traditional edible Thanksgiving delights.  By December, I became a non-compliant patient and got off bed rest and began walking around town like a bloated whale, eager to welcome my new twins into the world.  By January 2006, I was the mother of two gorgeous, vibrant and loud baby girls. My partner and I were blissed out in a sleep-deprived first-parent kind of daze that lasted almost 10 months.   Fast forward two years later, and by January 2008 we finally got the devastating news that our little Sylvie had a leukodystrophy—a degenerative disorder that affects the myelin sheath of the nervous system.  Only 1 in a million people get Sylvie’s brand of this disease; it’s the kind of odds you wish you had if you played the Tri-State lottery, but not the kind of luck you want when it comes to your child’s health. 

Hence just as the months became their darkest, I was flooded with earlier memories of all the hopes and dreams of being a mom of twins.  Christmas time is already a relatively sentimentalized time for many of us, but for me it was compounded with becoming a parent, finding out that my daughter was severely ill, and knowing that in the near future, I will most likely be haunted by recollections of once having two living daughters instead of one.  The “anticipatory grief” of losing my daughter sometimes weighs so heavy on my mind and soul that it is easy to forget to live in the present moment. I first heard this term—“anticipatory grief”—from the wife of a military chaplain.  Her husband was sent off to the Middle East, and she would cry for days from the prospect of her husband never returning home alive.  When I spoke with this very mindful woman, the experience of anticipatory grief resonated with me as someone who is parenting a child with a disability.  Not knowing when or how our children will or will not thrive is incredibly unnerving, even for those who are not met with daily medical challenges such as Sylvie’s.  Yet, the prospect of losing a child can become an all consuming preoccupation that clouds our daily activities and drains us of any creative attention we may have to give.  But it is only one way of moving through the world. While easier said than done, living a state of constant anticipatory grief is of little use to anyone, including Sylvie’s twin sister. 

My wise and patient partner recently reminded me that it was important that as parents we have some control over what type of memories we make.  While it is likely we will outlive our daughter, Sylvie, we can still live a life that will allow us to look back, not with longing, but with fondness and satisfaction that we parented as best as we could given the circumstances we were handed.  This Christmas and New Year was one of the most joyous holidays I can remember.  We just moved into a new house in a fabulous town that we love.  Decorating our Christmas tree was magical with two 3-year olds in the house. Sylvie’s therapy chair was situated in front of the tree as we adorned it with lights and ornaments; the girl can’t talk, but her eyes, coos, and smile sure tell us a lot about the joy she is experiencing.  We began our own family holiday rituals, sang songs, and baked & ate way more chocolate and cookies than anyone should consume.  Watching Sylvie and her twin sister enjoying the charm of Christmas made me slow down and truly appreciate how precious life can be.  This all sounds so trite and cliché as I write this now, but with the winter solstice came a light and grace I hope to hold onto. As the days get longer and brighter, my anticipatory grief became replaced with a cautionary hope. I’m wishing for medical miracles for Sylvie that she may live longer, or one day talk, walk or at least sit up by herself again.  But more importantly, I am hopeful that even in the midst of this unexpected parenting journey, Sylvie’s twin sister will have joyful memories of a family that loved her and her sister deeply. We will not grieve that we did not love enough.    

This New Year we have no resolutions other than to continue to settle into a life of grace and gratitude.  Our family has much to be thankful for, and while it’s easy to focus on the lousy circumstances of Sylvie’s genetics, it would behoove me to note that we have sources of pleasure and wonder too. Since we’ve moved back to Vermont, we have established an amazing team of care providers for our daughter(s).  We have an array of thoughtful and respectful service providers who advocate for Sylvie, and our pediatrician convenes us four times a year to coordinate Sylvie’s care. On more than one occasion, many of friends, colleagues, and family have voluntarily donated financial support to our family to pay for Sylvie’s care.  I got a card of warm wishes from a woman who once gave me a manicure in Minneapolis, Minnesota (and her husband is struggling with some rare kidney disease)! We’ve received cards, gifts and prayers from people we don’t even know wishing us strength.  So happy New Year 2010!  I don’t think our family can endure many more surprises or challenges; let’s hope this is a quiet and peaceful year. And if not, may we continue to have the strength, humor and love to carry us through to the next stage of this wacky parental ride.

Kirsten Isgro is a professor of Communication Studies at the State University of New York. This is her first entry on Hopeful Parents.

Sunday, January 10, 2010

A Conversation

I had a conversation with another bereaved mom this week. It touched upon many of the things I’ve experienced on this grief-journey, so I decided to share some of it with you. My friend’s child died suddenly, as a young adult. The following is part of our discussion.

“It doesn’t matter what people who haven’t been through this think about anything you feel, say or do. They are not walking in your shoes. They are lucky, but ignorant. We don’t have to explain ANYthing to them.

“I feel the same way about looking at her photographs as you do; I don't get tired of them, ever. In the beginning, it was the last photos of her life…her last year. I wanted to honor her strength, courage, and her glorious beauty as she was recovering from the treatment. Then, I started to go farther back, and to remember the happier, healthy days. My mom loves to look at her photos; my dad is hurt by looking at them. They have had disagreements about what to do about this.

“I know a woman whose daughter was killed by a drunk driver (the drunk plowed into a group of kids who were walking back from a youth-group event on a sidewalk). My friend, the mother, said that she and her husband had a “silent argument” for months, in which he would close the door to their daughter’s room, and she would open it. He would close it again, and she would open it again. That’s just one example of the impact of a child’s death on a marriage. As you and I know, there are many more impacts.

“About the cremation: when Katie passed away, I washed her body with the Hospice nurse’s help, changed her clothing, took a lock of her hair, and then sat in her room with her for a few hours. I was so sad to have to remove the jewelry I had given to her, and that she loved so much. I kissed her. We left the room when the undertaker came to take Katie’s body from home; it was a very harrowing feeling. We couldn’t watch them put her in a body bag, nor watch them take her out of the house. The three of us huddled in our bedroom until they were gone.

“Picking up the ashes from the funeral home was weird. And you have probably read (on my blog) what happened when we scattered some of her ashes this summer: a major setback, for me. I had to re-group and re-think how I was going to deal with the rest of her ashes. I’m only thankful we didn’t scatter them all at once, because I have now set some of them aside to keep for myself. I didn’t think I would feel this way, but there it is. Katie wanted them scattered, and I thought it would feel as if we were fulfilling a promise and honoring her wishes. I also thought it would feel as if we had set her free, as though she was now ‘everywhere around us,’ in the body of water that we live next to, where she grew up, but instead, it felt like we had thrown a part of her away. Who would have guessed?

“The thought of moving forward without Katie in our lives felt like abandoning her, and there is NO WAY that I was going to accept leaving her behind. In fact, as a mother, I think our children are somehow hard-wired into our systems, no matter how old they are. Your son may take a different shape in your life, but I don’t think of it as ‘letting him go.’ I like your idea of ‘Aloha’ much better than letting go. As to taking him with you, I think it’s perfectly normal to want to do that. So how do I take Katie with me?

“She gave me a wonderful gift when she was dying. She made a motion to take a handful of her heart, and then she put it on my heart, and told me, ‘Now, I’ll always be in here.’ I did the same for her, then, and you know what? She IS in my heart. I take a lot of comfort from that intentional gesture on her part. You can see that she was far more mature than her 12 years by the time she died.

“A few years ago, before Katie got sick, I bought a figurine. When Katie was sick, a friend from the hospital ‘coincidentally’ sent her a smaller version of the exact same figurine. They are on the right side of the attached photo. It’s like a mother & daughter.

You see how they have their hands on their hearts? It's also perfect that they are listening to shells. Katie loved her cell phone, and we both love the beach. I thought of it as a ‘shell phone.’ I put them together where I sit to pray, and they remind me that we can ‘hear’ each other, in some way.

“I don’t visualize heaven very well, but I think of her in sort of a parallel dimension. I imagine that she is aware of us, as we are of her; I send love to her, talk to her in my heart, tell her when I am missing her, say goodnight to her when I go to bed. I have NOT ‘let go’ of her, but on some days, I am more aware of her than on others. I think of her as busy with her own new life, and somehow, I trust that it is good.

“I haven’t packed up her room. I will have to re-arrange some of it this spring, as we are going to have an exchange student from France for 10 days, who will stay in Katie’s room. Katie would have LOVED that! So I feel that it’s okay to winnow some things out for our guest, but I am not looking forward to it.

“When I open Katie’s dresser drawers or her closet, fresh grief assaults me. I cannot imagine having to suddenly pack up my child’s room or apartment and close it forever. The shock, the sense of ‘undoing’ what he had intentionally created would be a nightmare and a horror. I’ve taken photos of Katie’s room as she left it. I’ve thought about making a quilt from her favorite clothes, but am not sure I could stand to cut them up.

“I don’t think you were wrong to assume that the ‘abundant life’ is available here and now. It is still abundant; it is just broken. Life goes smoothly and beautifully, and then it gets broken in pieces, but I feel that the Lord is in the midst of the broken times & places, too. It is IMPERFECT, but still abundant.

“One other thing that Katie told me when she was dying, now deeply comforts me.  I said to her, ‘I will miss you every day, and send love to you every day, and when I die, I will come looking for you.’ And she said to me, ‘You won’t have to look for me; I’ll be waiting for you.’

“It makes me tearful, but I remember how sure she was when she said it.”

I can’t wait to see her again, to feel her presence, to feel the love and life-energy flowing between us again. I miss her so much.

As Jackson Browne so perfectly said,

“You’re the hidden cost

and the thing that’s lost

in everything I do…

yeah, and I’ll never stop looking for you

in the sunlight and the shadows

and the faces on the avenue…

that’s the way love is…”


Karen Gerstenberger is the mother of David and Katie, and the wife of Gregg. She blogs at and at

Saturday, January 9, 2010

Bad word

As parents of children with disabilities, we are often required to fight battles on the fly.  The monsters that plague our kids rise up without warning, and our responses may be the right ones or they may be driven by fear and our oft-failing instincts, but they are needed at a moment's notice.  We might not make the most appropriate call in those moments, but we do the best we can, which is all we can ever do.

But sometimes, every now and then, we can see the monsters coming from a distance, and in those moments, we have the chance to stand ready.

At the beginning of the school year, we attended our daughter's IEP meeting at her school.  This isn't the kind of anxiety-filled, "go straight to a bar afterwards" meeting that I would have once expected.  When we moved to Schuyler's current school district four years ago, we did so precisely because the district had an assistive technology team, and specifically a class for kids like ours who use augmentative alternative communication devices to speak.  We left behind a string of bad school experiences, of moments when our daughter could have fallen through the cracks in the system.

At the age of three and a half, after failing to develop even the most rudimentary elements of speech, Schuyler was diagnosed with a rare brain malformation called bilateral perisylvian polymicrogyria.  The list of probable outcomes for Schuyler was daunting.  In addition to her lack of speech, we could reasonably expect her to suffer from seizures (as about 90% of polymicrogyria patients experience), feeding difficulties, fine motor problems and some level of cognitive impairment.

Six and a half years later, Schuyler's outcome looks brighter.  Her feeding difficulties are minimal, she has yet to experience any seizures, and thanks to the years she has spent with her speech device, her verbal speech, while still largely unintelligible, has improved dramatically.  She attends a special classroom for speech device users for part of her day, and the rest of the time is spent in a regular fourth grade classroom with neurotypical kids her age.  Schuyler's monster is still with her, but it's leashed now.  Thanks to her hard work, her take-no-prisoners positive attitude and a dedicated support team, her future is one that may be uncertain but is nevertheless loaded with possibilities.

I refuse to let those possibilities be scuttled by a serious word, carelessly applied by professionals.

The word.  The R word.

I have to confess, I have mixed feelings about advocating for gentle disability language.  I never joined any of the "Spread the Word to End the Word" campaigns, and wasn't inclined to join any of the angry protests regarding the use of this word in the movie Tropic Thunder.  I understand the outrage, but in the same way that I've rejected the "universal" acceptance of People First Language, it's not a cause that I can get behind entirely.  In my opinion, shackling the free expression of ideas, even dumb ones, isn't the answer.  It is, in fact, a step in the wrong direction.  I understand that not everyone agrees with me, but that's kind of the point.  Not everyone has to.

I do find the R word to be offensive, however.  Not so much when it's used casually or ignorantly, but rather when it arrives in my daughter's world with full authority.  Insensitive teenagers and edgy comedians don't have power, not in the long run.  Professionals do, they have as much power as we grant them, which is plenty.

At Schuyler's IEP meeting a few months ago, the school's diagnostician stated her intention, assuming we approved, to give Schuyler an IQ test, one that would assign a numerical rating which would place her into a cognitive range.  Against our better judgment, we'd allowed this test a few years ago, but the number that was assigned was high enough to dodge the word, and we went on with our lives.

The diagnostician informed us at this last meeting that based on Schuyler's problems with abstract thinking and her delays in her academic and verbal skills, Schuyler's score on a new test is almost certain to be lower.

Low enough to stick that word on my little girl.

The diagnostician wants this word to become part of Schuyler's lexicon, not because she's a bad person but rather because she wants Schuyler's record to reflect a certain reality, one determined by an easily administered and quantified test.  The appropriateness of administering this test to a nonverbal subject remains a topic of disagreement in professional circles, and the "additional services" that such a score would make available for Schuyler are ones for which she already clearly qualifies.

Schuyler knows about the monster in her head.  She knows about it, she accepts it and she fights the good fight every day, secure in the knowledge that she's different and even broken, but in her daily victories, she becomes more whole than any of us for whom the simple act of speaking is something we take for granted.

Schuyler's difficulties were handed to her, by Fate or Chance or an inexplicable God, and there's nothing any of us can do to change that.  What I can do is resist adding another obstacle to her path.  I can fight having a well-meaning professional attach this word, this fighting word of all fighting words, to Schuyler forever.  It's not a word that can ever be taken away.  It's a bell that can never be unrung.

It's a bad word when used casually by an ignorant public.  It's a very bad word indeed when applied coldly and without consideration by a professional, particularly as a result of a test that probably isn't an appropriate measure, not when administered via assistive speech technology.  And it's a bad word that I will fight, rationally or otherwise, from ever being associated publicly with my sweet and ferocious and clever little girl.

The diagnostician agreed to let us wait until now to make a decision, but we never needed this much time.  We're not going to allow the evaluation.

My objectivity is clouded.  I realize that.  The best I can do as ask myself a question, and my answer convinces me that we're doing the right thing.  The question is this: Which mistake can I live with?  Which one would I be able to look Schuyler in the eye and apologize for making?  My decision to skip a test that might have helped her somehow, out of my fear of stigmatization for her?  Or a decision to to allow a well-intentioned stranger to hang that awful word around her neck?

It's a question with an easy answer, just this once.

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.


Friday, January 8, 2010

I know a thing or two.

I signed up for this, I agreed to parent 2 boys who I knew had list of needs as long as my arm. You could say they were special needs, you could also say that they are just children who have needs, all children need things, and it is part of being a child.  Some children have fewer needs than others. Some children can remember a routine from day to day, they can learn in a way that makes similar to many of the other children around them, they can slow down and think before they speak and realise that their words might hurt the person they are saying them to.

My son Fudge needs help with all of those things.  He can not do things that other 8 year olds can do, he is unable to remember the order of a routine, he does not learn like everyone else, he does not think before he speaks and you can not see his disabilities until you get to know him.  We support him as best we can at home, we know what he needs and we do what we can to make sure he is successful. We do not get offended when he says something mean or hurtful; we discuss it and move on.  We understand that his brain does not work like ours and that is not his fault and he will eventually learn how to make things work for him.

Why is it then, that if I, an adult with a certain amount of experience in working with children can wrap my mind around his needs that it is so difficult for other adults with similar experiences to mine to understand his needs and work with him to make him successful?

Fudge is in 3rd grade, he has a teacher who has more than 20 years of experience and she known to be great with tough and challenging kids. She was Calvin’s teacher last year and she managed him pretty well but she is not managing with Fudge at all. In fact she having a really hard time getting anywhere with him and she refuses to listen to any advice that I ( his primary caregiver and a fellow teacher) may have for her.

She says that she knows how to handle kids like Fudge in one breath and than calls me at night frustrated because Fudge is being impulsive and getting into trouble every time she turns her head. When I try to offer some suggestions or ideas about how we can work through this and support him she tells me that she has it under control, she just wants me to be informed. *

Well I am informed, I live with Fudge each and every day and I totally know what it is like to try to teach him anything. It is hard, frustrating and challenging. I get it, I hear you, I can help you out with this, if you will let me.

If you are having such a hard time would not be good idea to perhaps hear what works for him in other environments and at least give it a try. Maybe trying something new might work better than using the same old technique that is clearly not working with this child.

I am no expert but I am his mother and I have learned a lot about his mind works, I don’t know everything but I do know what doesn’t work because I have probably tried it. I am able to help him because I pay attention to his needs and try my best to make accommodations that work for him. It really isn’t that hard if you are willing to try new things and step outside of the box.

J. blogs at Stellar Parenting 101 where she talks about being a Mom to 2 fabulous boys while living in the great white north.


* Fudge does not yet have an IEP because we are waiting for some things to be formally identified before we go ahead with one. He receives a little extra support in the classroom but he is in a small class and everyone knows that he needs the help

Thursday, January 7, 2010


For those who still might be unfamiliar with me I am a full-time stay-at-home dad and part time traveling artist during the warmer months of the year. Since making this transition about five years ago every winter has been an incredible struggle to make ends meet...or let's call it an even more dramatic struggle than the usual one the rest of the year.

Each of those off seasons from selling art I've sought unsuccessfully some type of temporary employment to prevent the need to constantly borrow money from family members to make it through the cold months. Most employers aren't very interested in hiring someone who has several hours available each day scattered between nursing hours, doctor appointments, therapies, and the inevitable "sorry I can't come in - the nurse is sick so I have to keep Ben." A long story short (you can catch the longer version at our blog over the next few days - it is quite interesting) I've recently found work that fits perfect with all of those scheduling conflicts! Officially I am now a house painter helping a friend with a fast track renovation of her house which happens to be very in I am certain I found hieroglyphics behind some old masonry recently removed.

For the most part I am truly enjoying the work. I despise a cramped office environment and though technically I have a boss to answer to, I get to work on my own. Most importantly I get to work with my hands. I guess I've discovered my collar is more a shade of blue than white.

Last week after a conversation with one of the other contractors on the job I began thinking about the correlation between the renovation project and the work involved in raising our exceptional son. The comparison at times has been quite startling. Most construction jobs revolve around a blueprint or a master set of drawings providing each trade very specific and detailed information about how to complete their work. In the case of this project I'm now involved with our plan of action is based upon what we might find behind the next wall we tear out.

In the case of a typical child there is plenty of information available to serve as a blueprint for his or her growth. I recall reading those "What to Expect When You Are Expecting" books during the first few years of our daughter's life. With an exceptional child there are no master drawings, no detailed specifics of how to get from point A to point B. Instead there is an ever-changing environment with few clear answers and difficult choices that involve creative thought, an adaptable mindset, and willingness to endure physically (and emotionally) challenging hardships.

This was made very clear to me this morning as I surveyed the work I've completed over the first few weeks. When I started I honestly didn't know if I had it in me to actually do a good job of painting. Yeah I am an acrylic painter by trade but this house painting stuff is a completely different animal! Also I found it difficult to know where to begin. We're talking a repaint on an entire house inside and out with other skilled workers needing to complete their work as well. To say it seemed like a confusing mess would be like saying Tiger Woods has a slight image problem at the moment.

Essentially I just followed my intuition (and a few hints from the homeowner about what she wanted completed first) and just started. The first few days it didn't feel like I was accomplishing a whole lot - doing a good paint job involves a great deal of preparation before applying that first coat of paint. I also got to know my coworkers who have been most helpful in communicating and organizing our goals so that we all work efficeintly.

So as I finished cleaing up today I felt a sense of pride and confidence that I didn't have two and a half weeks ago. That feeling was not unlike the one Joan and I felt back in October when we celebrated Ben's tenth birthday. It was amazing to appreciate the "work" we have done ourselves working a decade without a blueprint.

Ben and Bennie usually do most of their construction at A Work of Art: Raising Our Exceptional Son.

Wednesday, January 6, 2010

History Of A Stim

For those of you who aren't in the know (you lucky bastards poor uninformed souls) a 'stim' is short for 'self-stimulatory behavior.'

And for those of you who are still wondering what the heck I'm talking about, a self-stimulatory behavior refers to repetitive body movements or repetitive movement of objects often appearing in people with developmental disabilities, but most often in people with autism.

It's not entirely known why people do these stims, but it's thought that they can either calm a person or provide a person with sensory stimulation.  Either way, a stim can quickly go from something your loved one does on occasion to a thing that I like to refer to as 'becoming the soundtrack of your life.'

I'm pretty dramatic at times (I's true!) and have always had my own personal movie soundtrack playing in the background of my everyday comings and goings.  Like Richard Marx's 'Hold Onto the Night' playing in the background of my 14-year-old self as I lamented on the boy I slow danced with at that forbidden teen club...the one I'd never see again after that magical night.  Sigh....

But, alas, I am no longer speaking of such trivialities.  This is for real; a constant, sound and sight-filled extravaganza that has been playing in my household (and even in my own head after M has left the building or gone to sleep) for over six years running now. 

I thought it might be fun to attempt to recall the 'set list' of stims as performed by my boy over the years.  I'm doing this partly for my own documentation, partly for those of you new to this who may be wondering if what your child is doing might be a stim, and partly to make myself attempt a chuckle over some things that have really and truly caused me and the rest of my family a wee bit of mental anguish at times, concern at others, and has, well, possibly contributed to the intake of more wine on certain days.

Let's give it a go, shall we?  (Please note that stims generally have legs of about 4-9 months in my little man's world.  Sometimes they overlap before fading away, and other times one disappears and is replaced by another stim so quickly that I realize I had forgotten to perform my naked, stim-be-gone ritual where I light sage smudges on fire throughout my home and dance to Disney music while simultaneously watching the 'Cars' movie over and over and over again.)  That last part was just to see if you were paying attention :)  In all seriousness, here are the ones I can recall:

1.  The side to side 'no' head shake.

2.  The body stiffening proclamation of 'EEEE!'  (Wasn't that the title of a Mariah Carey album? No??)

3.  Rubbing his feet together at a face pace while making sounds; usually when excited. (This one's never really gone away)

4.  The exersaucer-jump-wildly-up-and-down stim. (Totally didn't realize that's what it was at the time!)

5.  The raspberry stim. (This one was so bad that I remembered telling the other half it was the thing that made me know that something was seriously not right with my child.  Oddly enough, even though I remember what I dubbed it, I cannot exactly recall how it sounded)

6.  The scream.  (

7.  The shirt chew.  (We vividly recalled this period recently when opening up the hand-me-down bin of size threes to B and noted that there were barely any shirts in there!)

8.  The finger chew. (Yuck)

9.  The book, magazine and plastic toy chew.  (Frustrating, especially because books are one of M's only enjoyments)

10.  The book and magazine crumple.

11.  The leather couch chew (Total yuck.  This one has left our couch with delightful small-mouthed teeth marks.  We are very happy we bought this couch on Craigslist!)  *Please note that, YES, we do give M chew tubes, but it has taken us a very long time to get past the irresistible nature of textures other than the chew tube.

...and now we are current with the following two stims...

12.  The scratch-the-walls or scratch-anything-leather stim.  (This one will cost us when we put our home on the market in the near future)

Drumroll, please, as I present to you the grandaddy of all stims...

13.  The high-pitched, sing-songy, every-waking-moment, never-a-space-in-time-without-sound stim!  (This one's a doozie folks!)

So while I've made light out of these here, let's be honest...stims are a very difficult thing for families to tolerate.  But as difficult as they are, I totally get that the sound, lights and movement of everyday life are even more difficult for my child.  I cannot tell you how many times I have said to M that I really and truly wished he could talk to me and tell me what these stims do for him. 

You know how people ask who--past or present--you'd want to sit down and have a conversation with?  I think Jesus and Elvis are generally some of the most popular answers.  Well, for me, it would be M.  To have a conversation with a verbal, lucid and focused M.  Man...wouldn't that be cool?

...Cue The Rolling Stones 'You Can't Always Get What You Want...'


Mama Deb sometimes attempts to be funny even when life is not at This Is My New Normal.