Wednesday, March 31, 2010

Spring Break?

Is it just me, or is the "break" part of spring break directed at teachers? I like to think of it as Spring It's-On!

We are out of town -- out of Chicago -- and in Los Angeles for the week. The good news is that I've found a kids club at a resort that allows non-guests to attend. The kids are there in the mornings from 9AM to 1PM. The other good news is that I have to stay on resort property while the kids are there. For a few hours every day, I get to soak in the ocean, the skies, the spa. It's nice. So I can't complain about that.

The hours from 1PM until 7PM are a different story. My nerves are on the fritz. I have been downing my acupuncturist's herbal prescription called "Free and Easy Wanderer -- PLUS" because the regular Free and Easy isn't strong enough. If this is what I'm like with Free and Easy, I don't want to know what I'm like without it!

I've had a lot of anger lately. Weird because I thought I did the whole anger thing once before. And anger is such a social no-no. Depression gets a lot of props and acceptance that it occurs. But anger? No. We're a country founded by Puritans, who probably liked to swallow a lot of their feelings.

I'm so angry, I want to scream, yell, and run nearly once a day. This isn't how spring break is supposed to feel! We're supposed to be this happy family with an occasional meltdown, but who generally enjoys exploring the sites. I need to let go of that image. It's so hard to let go. And part of me doesn't want to. I want to hold onto it and feel pissed that it's not happening to me!

I don't know. I think my last post was an angry one, too. I'm still mad, I guess. The good news is that after anger, I get to continue cycling around the never-ending process of grief. Up next: depression. That should be uplifting. Somebody get me off this ride!

Tuesday, March 30, 2010


I have to admit that I'm going through something over here. It's another wave of grief, of acceptance, of letting go. And it's hard. It's hard to straddle this place of adoring my son and feeling incredibly annoyed by him. Irritated. Impatient. Exasperated. 

It feels bad. Like it's a dirty secret. I love him all the time. But lots of the time lately, I don't like him. I know he can't help it. I know he is doing the best he can.

That makes two of us.

I know my feelings are rooted in worry. In fear. What if he never figures it out? What if he never makes a real friend? What if he spends his life alone? 

People offer things to be helpful. They say, Hey! Look at Temple Grandin!

That doesn't help me. Now, I love Temple Grandin. She's amazing. Brilliant. She's helped an enormous number of people. And livestock--if only in their final hours of life. She loves animals, cows in particular. Man, she loves those cows and I love that. I couldn't be more impressed with her. In a million ways. Truly. But she says herself that she has the nervous system of a prey animal, that her two main emotions are curiosity and fear.

I want more for my son. I want him to have friends, a family, human connections. 

People say, HeyI don't blame your son for not wanting to be with other kids! Kids are tough. He's probably just picky! Kids get in your face. They're loud. They're bossy. They're aggressive. They say mean things. They overreact. 

That doesn't help me. Kids out there aren't doing those things. My son is doing those things. He's the kid grown-ups complain about.


I've been staring at Michelle Garcia Winner's Social Thinking website, adding books and videos to my cart, racking up another big fat bill, more curriculum, more strategies, more approaches to help teach my son how to strengthen areas of his brain, grow connectors to isolated pools of knowledge, desire, skill.

Maybe these will work. I'm a long way from giving up. But at this point in the road, I am walking more slowly, stopping to squint up ahead where the road turns and I can't see what happens next.

I haven't been blogging. I'm not sure what I can say these days. Not sure what I can offer. I don't want to write the awful details. I don't want to paint that picture. It's not accurate since there are so many sweet details.

If I tell you that he hurled his metal water bottle at me, narrowly missing my head and the window pane, does that tell you anything about him? Or shall I only say he thinks we are connected by an invisible spirit bridge that reaches from his heart to mine? Shall I tell you the number of times he's bitten my arm? Or shall I only tell you that at nighttime, he sighs and hugs me, says his fears fade away the instant I'm near, though he knows he will only be truly free when he conquers his fears on his own.  

Or shall I just say that my heart feels unwieldy, large and sloppy; unmoored; that it slips down my sleeve when I bend over; slips into my socks when I run; that when I stretch, its chords stretch, almost splitting in two.


Monday, March 29, 2010

Truffles for the neighbor, treats for her dog

Recently I went on a Caribbean cruise. For a whole week, I didn't do a load of laundry, or a dish, or wipe a butt. It was heaven.

Meanwhile, my sweet husband ran the fort. Our almost ten year old daughter who has Asperger's is being homeschooled these days, and he left her home in the morning while he walked our son to school, one block over. He would be gone somewhere between 10 and 15 minutes. He made her breakfast, sat her at the kitchen table, and reminded her not to answer the door if anyone knocked. 

He always brought the cell phone. She knows the number, but just in case, it is prominently displayed beside the phone. She knows how to use it.

She relishes these brief moments of freedom. They rarely happen because both parents are usually home in the morning. I know she sneaks chocolate chips from the cupboard when she's alone. It tickles me to imagine her wandering around the house, full of herself and her independence.  

So one morning, Todd left with Seth, and upon his return, as he walked down our street he saw two people on our front steps. He assumed it was Jehovah's witnesses or some other solicitors and he slowed his step a bit, hoping they'd have moved on by the time he reached our porch. He knew Riley wouldn't answer the door. As he got closer, he couldn't believe it. One of them was actually sitting on our front steps, chilling.

As he got even closer, he realized it was Riley. A neighbor woman and her dog were standing beside her. He quickened his step.

He neared them and noted Riley was in her pajamas and bare feet, and it was cold that day.

Apparently, Riley did not like the cereal he had poured for her, and had attempted to run outside and tell him, but he and Seth were too far down the street to hear her. When she tried to get back inside, she realized she'd locked herself out of the house. Jingle, her service dog, was locked inside.

Our neighbor, whose name I did not even know, was walking her own dog, and she saw Riley outside. She waited with her. She put her coat around her. Because of Jingle, and the community involvement it took to get her, she knew Riley has Asperger's. It made her late for work, but she hung out with Riley until she knew she was safe.

The experience brought up a bunch of insecurities for me. Would a typical ten year old come running outside in bare feet because she didn't like her cereal? Are we wrong to very occassionally leave her home alone for between ten and 15 minutes? Is she safe? She's certainly old enough to take care of her needs for 15 minutes, and she's not one to ever do anything to get in trouble, but is her judgement lacking? She's unattended longer than 15 minutes when we are home and in the shower or busy with other tasks. How do we teach her independence without giving her small tastes of it? What would she have done if the neighbor hadn't come by?

I asked and she replied, "I would have just waited on the porch for Dad."

"Were you worried?"  

"No. But I was cold."

We're using this as a learning opportunity. Not liking her cereal is something she could have waited to tell her Dad about. It wasn't urgent. A good lesson for her to learn. As a result of this incident, we've reinforced which neighbor's doors she should knock on if she ever finds herself in a similar situation. 

The lesson in it for me?

There are kind people, who will help my child if she needs it, even if I'm not there holding up the world.  


Michelle O'Neil explores family, spirituality, Asperger's, service dogs, law of attraction, homeschooling and other things at



Sunday, March 28, 2010

The combination

My son Rocky calls his autism and OCD (obsessive compulsive disorder) "the lethal combination". I'm beginning to understand why.

A year ago, he stopped watching videos (his passion) on our nicest TV, one of those giant LED flat-screen things with all the bells and whistles. He had tried to perfect the image by messing with the brightness, hue, and other settings. When he was unable to achieve perfection, he decided that he could never watch that set again.

This week, he was fidgeting with the remote control for the TV in my room, and a tiny plastic nub that latches the cover onto the battery compartment broke off. Though I was able to tape the cover on, I was unable to find the tiny detached nub. Now he says he cannot ever watch my TV again because he feels so guilty every time he touches the "deformed" remote. "It won't ever be complete again," he explained, "and I'm a completist."

His rules for living are making it harder and harder for him to function. He won't attend movies at any theater that doesn't have digital projection. He won't eat at his former favorite (and only tolerable) restaurant because one time he found a single pea-sized piece of lettuce with a dab of mayo on his otherwise plain sandwich. Most clothes are off-limits because he once read a list of all the companies that at any time in history were alleged to have used child labor. 

He's working with a new therapist, whose sole goal is to give Rocky the ability to deal with the normal stress of daily life without relying on these increasingly restrictive rules and rituals. As Rocky would say, "Good luck with that."

I hope the therapist succeeds. I'm running out of TVs.

Friday, March 26, 2010


One of the brightest shining stars of this last 9 months (since receiving our diagnosis), has been Noel's teacher, Ms. R. She's been a lighthouse for our often stormy sea.

Ms. R is a first year teacher. She actually attended the workshop we attended about the school, back in March of last year, as a prerequisite for getting a job there. So I remember her, across the room from me, fresh faced and taking in the talk about learning styles and how this school could help to cater to all of them.

When I met her, formally, at the Parent Meeting prior to the first day of the year, I was afraid to tell her. Noel's diagnosis was brand new, and I was still unsure who needed to know, who would use the information to judge him, to label him, to shove him in a corner. And so I shook her hand, and smiled and went home.

When we started looking at private schools last year, it was because we knew that it would be all too easy for Noel to end up in a crowded classroom, labelled as the rowdy, bratty kid and written off as a lost cause. I could not even bear the thought. We chose his school because it would allow him to do his school work from under his desk, if necessary. Because they had a weighted frog available for those who need the sensory input. Because they would allow him to dance his understanding of the number 35.

Even knowing those things, I was tied up in knots when we dropped him off. But still, I said nothing.

At the end of the day, Ms. R greeted me with a smile. An exhausted smile. And I finally let the cat out of the bag. She nodded, put her hand on my arm, and said 'He'll do fine.'

And I believed her. And she's been right. But I truly believe that one big reason that he's done fine is that he has her. Day in and day out, Ms. R has taken the time to get to know Noel, his quirks and his needs, has given hugs when needed and just paid attention to him. If he has a bad day, she shares it with us, but always with a quick note about the positive as well. And then she puts that bad day away, and starts the next day with a clean slate. She gives suggestions for what works at school to try at home. She lets us know exactly what caused a meltdown on any given day, so that we plan for the next one.

And she pushes him. She doesn't let him slip away in his busy classroom, to withdraw or make poor choices. She helps him move slightly from his comfort zone and he does because he knows she'll be there to catch him.

I wish I had the words to thank her. I doubt she knows the burden she lifted from our shoulders - to know we had somewhere to send Noel where he was welcomed, somewhere where we knew he was safe and cared for and challenged.  Every single parent of a special needs child needs a Ms. R in their court. I know that if we could we'd take her with us on the rest of the journey.



Stephanie is supposed to write at Robot Tea but instead she spends too much time on Twitter.

Thursday, March 25, 2010

Denial: It's Not Such a Bad Thing

It's the day before we leave for our Disney vacation and I'm hustling around the house, picking up the paraphernalia a trip with kids demands--favorite toys, high SPF sunscreen, small bottle of Johnson's Baby Shampoo. I'm almost done when I realize I've forgotten something critical: Max's anti-seizure medication. We keep it in a Baggie in a backpack. He hasn't had a seizure in a year, but we always carry the injection just in case.
I look at the plastic bag holding the shot of goop and it strikes me, suddenly, that I am not a mom like other moms who can pack up the clothes and the toys and the toiletries and go. I am a mom who needs to bring anti-seizure medication with her.
The realities of my son's cerebral palsy strike me sometimes like a bolt of lightning. Mostly, though, I don't think about it. Some of that has to do with my busy life, some has to do with acceptance, and some has to do with denial, which has actually served me well over the years. When Max was a baby, denial enabled me to return to work and actually do my work. As he matured, denial enabled me to stay upbeat as Max's challenges emerged. Denial enabled me to avoid going on the anti-depressants the doctor recommended (though I don't think there is anything wrong with taking meds if you need them).
I saw a therapist when Max was a baby; every Tuesday night, I'd haul him in his babyseat to the woman's office, and Max would doze peacefully as I'd sob my heart out. She told me that I was good at "compartmentalizing," which means I am able to block out painful thoughts and feelings. What's not so good about this is that it means I have a bunch of locked-up crap inside my head. It seeps out at times, sadness triggered by a poignant passage in a book or a blog, anger triggered by some seemingly small thing.
Make no mistake, I am pragmatic as necessary; I have gotten Max therapy up the wazoo, fought the insurance company to pay for it, tried alternative treatments, given him every opportunity to succeed. I have never been in denial about Max's needs. Yet I do have lingering vestiges of denial that I am the parent of a child with disabilities.
And I don't think this is necssarily a bad thing.

Tuesday, March 23, 2010

Take It Easy On Your Old Momma

Ugh– teenagers. One would think that by now I would be ‘well-seasoned’ when it came to dealing with all the issues that surface during the teenage years. Ashley is my youngest teen. She has two brothers and a sister who have been teenagers for quite a while. But no matter, she is doing a fine job of increasing the number of grey hairs on my head. Funny thing is, the qualities I so desperately want her to have as an adult are the qualities that are currently driving me bonkers.

I want Ashley to be strong-willed and opinionated. Those two qualities will serve her well when she is an adult and other people want to have pity on her for her disabilities or have very low expectations of her. I want her to speak up for herself, and not back down when she believes strongly in something. I want her to be able to say “no” or “back off” or “leave me alone”. I want her to have goals for herself, and then do whatever she can to accomplish those goals. I want her to seek out the things she enjoys in life and let nothing stand in her way of obtaining those things. I want her to express her feelings, be they good or not-so-good feelings. But gosh darn it, does she need to be practicing each and every one of those skills right now, and with such a vengence?

You wear me out, my dear child, and the thought that the best (worst?) is yet to come scares me to death!

Monday, March 22, 2010

Are You Caring for Your Adult Child?

Ladies' Home Journal is working on a story about women who are full-time caregivers for their special needs adult children around age 23 or older. If you or anyone you know fits this demographic, please e-mail Sonia Harmon.



I’m definitely still traumatized by the notion that I could leave my house one hour and find that my husband was dead the next.  It makes no sense to me on an emotional level and I still find myself walking around in a daze trying to understand how it happened. I feel like so much of my life might have been a dream.

But if I’m being completely honest, I had the same difficulty when I gave birth to G. 

As a woman, I realize I was pregnant for almost 10 months, so I had a lot of time to wrap my mind around the fact that I was inevitably going to have a baby if my pregnancy was successful.  And it was.  And I remember every one of the 10 hours of hard labor I went through to get that baby out. 

When all the pushing and screaming (they took me off my epidural because I wasn’t “focusing” and then asked me, “Do you realize how loud you’re screaming?”) was done, I looked at G.  - freshly weighed and Apgar tested and thought, “Well there you go.  A baby.”  We knew we’d name him Gabe, so everyone in the delivery room said “hi” to Gabe and then I went about nursing – which is pretty crazy considering just months before these inflated mammary glands had something to do with getting me into this situation.  (And now they were being requisitioned for said baby and his milk - which I would dutifully manufacture, without any real idea of how).

I soothed the baby, kept him warm, kept him fed and all the other fun things parents and babies can do together, but I had very few, if any, Hallmark moments that included soft focus of warm lighting, giggles of pure glee and extended periods of our family, huddled together, looking at our pride and joy. 

At times I would, in fact, look on in horror – how in the world did I make this thing and when can I get rid of him?  From there I would think, “Do I really want to get rid of him?  Would I kill him to get rid of him?  Drop him down stairs?  Leave him in an overheated car?”  Oh, the mind of a mother is not the gentle place of diaper ads: it can be one of the most macabre places for maternal thoughts to fester.

I had to debate with myself if I had post-partum depression.  When I seriously thought of a PLAN to kill the baby, I had none.  More than anything, I was just worried that since our relationship seemed at a lose end, I would err in judgment and inadvertently kill him (dropping down stairs, death in an overheated car, suffocation in bed, choking on toys, drowning in the bath:  come on Ladies, help me out – I’m not the only one here…).

For two years, I looked at Gabe growing and thought, “That’s nice.  Not dead yet!”  And then, one day I can’t really remember, a light bulb went on: I had grown very fond of Gabe. I thought, “I might even be in love with this kid.  Hmm.  How about that?!”  Thankfully, that’s just about when we got his autism diagnosis and in all honesty, I was floored, but got back up fairly quickly and thought, “It is what it is.  And isn’t he just ADORABLE!”

Gabe is 6 and I’m still in love with him, even though life is crazier than usual without J. (who I speak with on a regular basis in my head to cushion the blow that inevitably, as a result of death and then cremation, he is not coming back).  I’d say if it took me a few years to get settled with one of the most precious people in my life, it’ll take a few years to say “good-bye” to another.  Who ever thought existence could be so painful?  I’ll just have to forgive myself for being slow and not really understanding how it all happens.


Sunday, March 21, 2010

Healing and Curing

As readers of my blog already know, I have been lately embroiled in a particularly nasty fight with my daughter's insurance company over a medicine that her neurologist has prescribed in hopes that it might help with her seizures. The fact that the entire country is involved, to a certain extent, in this fight, makes the usual machinations of caring for a chronically ill child perhaps more dramatic. It's been difficult for me not to feel that my own particular hardship is somehow an emblem for the country as a whole and that my voice and the voices of perhaps millions like me has been drowned out by politics and hysteria. And without entering into those politics myself on this blog, it takes some will to not feel dragged down by it all, to not feel as if the voices raised to such alarming degree against reform are actually shouting at me, at Sophie, at the difficulties we endure. When I am spending literal hours on the telephone with an insurance company, a pharmacist and a neurology office to settle what is really a basic issue -- the prescribing of birth control to my severely disabled daughter with uncontrolled seizures in the hopes that it might better regulate the hormones that wreak such havoc on her brain on body -- it's difficult NOT to think that there is some larger conspiracy, something systematic in the obfuscation that I encounter.  

I also might draw a parallel to the over-arching issue of helping my daughter in this convoluted mess we call a healthcare system in the United States. The fact that despite consultations with the best neurologists, geneticists and specialists in the country, coupled with the most advanced drugs, diagnostic tools and tests, next to nothing is really known about my daughter's epilepsy nor is it even remotely helped, has been the great conflict and defining component of my life. It has caused a helpless anger at times and a patient, stoic resignation at others. I have been sucked down the path of recrimination, lashing out at the cruelty and seeming off-handedness of doctors and then trudged backward -- forward --  toward a more enlightened view that many are working to the best of their abilities in a samsara-like way. And in the same way it takes quite a bit of will not to take personally what happens in the political world, I must continually talk my way out of the bewilderment, confusion and anger I feel about how resources are allocated in our wealthy country, what sorts of worries the populace has (terrorism) and the power corporate interests (drug companies, food companies, etc.) have in shaping those worries.

Whenever my mind is consumed by all of this (like now!), I try to be still and present in this moment. I realize that all my work, all my kvetching, all the expending of energy, the frenetic running on the wheel is useless in an essential way. This might sound like resignation or even the signs of a depressed person, but I'm sure that it is not. I find it difficult to really articulate the feeling I have when I stand on the brink and look over the ledge but manage not to fall but to fly. I go back, again and again to this quote by Dr. Paul Epstein, a naturopath:

In curing, we are trying to get somewhere, we are looking for answers. In curing, our efforts are specifically designed to make something happen. In healing, we live questions instead of answers. We hang out in the unknown. We trust the emergence of whatever will be. We trust the insight will come. The challenge in medicine is not the choice between the one and the other. We need both.


Elizabeth believes that her daughter has been healed but not cured. She still despises the insurance industry and thinks this country could use a little more socialized healthcare and a little less drive and beat to self-interest. She blogs regularly at a moon, worn as if it had been a shell.


Saturday, March 20, 2010

The Play's the Thing

I come from a family of theater enthusiasts, myself included. And although I am the only one of four children never to have starred in a play, I was always happy to watch them. Enthralled, actually. A good production is amazing to see, and even better to share.

So I always wondered if my son, now fifteen, would ever be able to enjoy seeing a play with me. In the past, it was out of the question. His sensory issues due to his autism and his need for frequent breaks would not have made a play possible. He would have never made it to intermission. But his love of movies has sparked a recent interest in theater, so he started taking a theater class as an elective. And when comp tickets for a student-written play were given out to his class, he was motivated to go.

We ran through a little social story beforehand to prepare him – must not talk or make any noises during the play, must not get up before intermission unless it’s an emergency, etc. The theater class students were to sit in a reserved section of the theater – the first three rows. I urged him to sit near the aisle in case he needed to leave, and then I went to find a seat several rows behind him. I loved watching him choose his seat in the ten minutes before the play began. First, he sat in the third row near the aisle – good, I thought. He stayed there for a few minutes, and then he got up and nonchalantly moved to the middle of the front row. Probably not the best choice for him. He seemed a little uncomfortable there, and sure enough, he got up after a moment and moved again. Then Goldilocks settled in the second row, a few seats over from the aisle. Well done, I thought. And there he stayed.

The lights dimmed, and the play, a musical adaptation of The Lord of the Flies (yes, I said musical), began. I was highly intrigued to see how the songs would be handled, and I must say that I was quite impressed. This was definitely not a comedic musical; the songs were well written in a dramatic tone and fit seamlessly in the course of the story. And what a talented group of young actors and singers! The boy in the roll of Ralph had an incredible singing voice – I could have listened to him for hours. All of the students amazed me – the set was admirable, and the performance was flawless.

At intermission, Nigel got up and I met him out in the aisle, where he quietly told me that he was going to the bathroom. I told him how well he was doing and went back to my seat. Nigel came back a few minutes later and returned to the same spot in the second row. He turned around and gave me a little smile, and my heart soared.

When the play ended, he applauded with everyone else and then came back to find me. I could tell that he was a little worked up, and I stuck close to him as we filed out of the theater. We entered the foyer, and all the actors were out greeting people. Nigel walked toward the actor who played the character Piggy, held his (own) arms up, and said triumphantly, “It was magnificent!” I smiled, not remembering when I last heard so much emotion in his usually stoic voice. Piggy thanked him and said, “I’m so glad you could make it!” My son then introduced me to the talented boy, a senior, who had adapted the play and written the songs, and had starred in the roll of Jack. I shook his hand and congratulated him, telling him how amazing it was. Inside, I marveled at all these wonderful kids who had befriended my son, a freshman with the different speech patterns, sensory issues, and social mannerisms of autism. These kids were so genuine, so sincere. They welcomed him as one of them.

I asked Nigel if he was ready to go. I could tell he was a little amped up, and even I was starting to feel a little claustrophobic. Things had gone well, and I wanted to get home and relax. “Wait! I want you to meet Ian,” he said, looking around. How did he know all these kids?! This was a side of him I had never seen before! And then, as if to illustrate that point exactly, he suddenly called out, “Ian!” and threw his arms around the boy who had played Ralph, the one whose voice I loved. Nigel gave him an immense hug – a victory hug. And Ralph/Ian hugged him back, smiling and thanking him.

It was the first time I had ever seen my son initiate a hug. All his life he’s patiently - albeit stiffly - accepted our hugs, indulged us. I’ve always said that hugging Nigel was like hugging a surfboard, and the taller he gets, the truer that is. Once, when I surprised him with homemade chicken tacos (his favorite dinner), he tackled me with a wrestling move that literally took me to the floor, but I’d never seen him solicit a real hug in his fifteen years.  And now there was this. This perfectly executed, wonderfully appropriate, well-received hug. And I got to see it happen, right before my eyes. It was beautiful, something I didn’t know I’d ever see.

“This is my mom,” I heard my son say. I felt like I was in a dream – people talking and moving all around me, creating a sort of buzz that put me in a hazy state. And I was overjoyed, just filled with emotion, choking back tears as I smiled and shook the hand of yet another talented young man who obviously means a lot to my son. I told him how much I enjoyed his singing; I wasn’t able to get much else out.

We left soon afterward, walking side by side out to the car in the cold night air. Nigel exclaimed how great the play was, and I was so happy to have enjoyed it with him. I breathed in sharply to fend off my joyful tears, thinking only of the wonderful gifts that were bestowed upon me that night – watching a play with my son and witnessing a most glorious, unexpected hug. Every day with my son I learn that the simplest things are often the most profoundly experienced.

                                     Tanya writes TeenAutism.

Friday, March 19, 2010


It's been a crazy month, but we're finally settling into our new house.  We've been trying to move in gradually because our son Connor reacts so badly to change.

How do you explain to a child with cognitive disabilities about something like a move? 

He spent a good portion of the last month absolutely terrified; he was having nightmares, refusing to eat, was extremely clingy and having multiple meltdowns-- all things that are wildly out of character for my normally even-tempered, happy-go-lucky child.  Though it's difficult to communicate with him due to the fact that he is nonverbal and has a limited sign vocabulary, after playing a number of rounds of "Twenty Questions" with him we finally figured out why he was so upset.

It was the packing.

See, my husband is in the military, and so in Connor's experience every time a lot of bags get packed, Daddy leaves.  And the last time Jeremy left, when he returned it was to a hospital-- not to our house.  So in Connor's mind, packing means that his father is leaving again.  And when we started packing the whole house he got it into his mind that this meant I was leaving too.  To a child who depends on his parents to be interpreters and protectors for him against a very, very strange and scary world, this must have seemed like the ultimate betrayal. 

Matters came to a head when I was taking a load of boxes out to our van one morning before Connor's school started and, not thinking twice about it, left him sitting in the kitchen in his wheelchair.  My husband Jeremy was just around the corner and could see Connor, but Connor couldn't see him.  I walked back in two minutes later to a completely hysterical child, and no amount of comforting by Jeremy or me was going to calm him down.  He sobbed all the way to school, stopped as soon as we walked into the room (as here were people he trusted who were NOT packing and leaving him) and then when I picked him up broke down again as soon as we got into the car.  He spent the rest of the day clinging to either Jeremy or me and bursting into tears if we so much as set him down on the couch.  In his mind we were leaving him, possibly forever, and no amount of explaining was going to make him change his mind.

It took us physically staying in the new house overnight together (and avoiding him seeing me carry any more boxes out of our old apartment) before he finally figured out that what we'd been telling him all along was really the truth and that we weren't going to be abandoning him.  While I'm glad that he's calm and happy now in the new house, it leaves me wondering how we'll explain other difficult issues to him in the future.

I hope that won't be any time soon.


You can find Jess over at

Thursday, March 18, 2010


Just once or twice a day I remind someone to put on their medicated patch or take it off.

Just once or twice a day I remind someone else to take their morning, afternoon, or evening medication. 

Just once or twice a day I remind someone to brush their teeth, wash their hands with soap, turn off the water, don’t forget to wipe.

Just once or twice a day I give the dog her meds for incontinence and fiber to keep her stools soft, but not too soft.

Just once or twice a day I remind someone to close their mouths while chewing, stop kicking the wall, zip up, close the door, put the seat down, switch your shoes to the other feet.

Just once or twice a day I remind someone to let the dog out, let the dog back in, feed the dog, don’t forget to clean the water bowl.

Just once or twice a day I remind someone to make their bed, put their dishes in the sink, wipe their hands on a napkin before touching anything, say please.

Just once or twice a day I remind someone to turn in their homework, give their teacher a note, bring back their folder, did you eat all your lunch?

Just the other day the kids’ doctor gave me one more thing to do, just once or twice a day.

Just once or twice a day I’d like to attend to my needs. 

Just once or twice.






Tuesday, March 16, 2010

plugging the dam


My husband looked at me like I had three heads. If I'm being honest, that happens a lot.

We were in the middle of the 'Construction Zone' at our local children's museum. The area was set up with various stations - each featuring a block of wood upon which the kids could test-drive a particular wood-working tool. The kids wandered through, sawing and filing and drilling into the wood.

I stood with my camera phone in front of one of the blocks of wood, waiting to get an unobstructed shot. It wasn't easy as kids milled around the small space, bouncing off one another like little billiard balls. 

"Um, hon?" my husband began. "What are you doing?"

I ducked around a tow-headed toddler.

"Taking a picture," I answered.

"Of the WOOD?" he asked incredulously.

"Yes, I like what it says on it."

"Ok then."

He moved on, helping our older daughter manage a hand drill.

He's learned not to ask. 


Last night, I went to a meeting. I am on the steering committee of a local educational advocacy group. We met to discuss our priorities and strategies and to attempt to divide the workload. I left exhausted. Not just physically, but emotionally exhausted. 

A woman is stretched flat across a dam wall. She is spread-eagle like a rock-climber halfway up a sheer mountain face. Each of her hands and feet are pressed against cracks in the dam. 

Water bubbles up from a newly formed crack. She repositions a hand to stem the flow. Water floods through the hole that she's abandoned. The process is repeated again and again. The water just keeps coming. 

This was the image in my head as I drove home.

I start to feel defeated at these advocacy meetings. Every time. There's just so God-damned much to do. Where do we start? What do we prioritize when EVERYTHING feels so urgent? What part of our kids' support puzzle could possibly be any less important than any other? Which of the potentially slashed resources do we look to save first? 

I knew I needed to write for Hopeful Parents today. But I was feeling far more overwhelmed last night than hopeful. I wasn't sure what I could write.

But then as I pulled into my driveway, I remembered something. Something that had struck me over the weekend. Something that had stood out in the middle of the chaos at the Children's Museum. Something that had moved me to take a picture. Something that perhaps, somewhere down deep, I knew I'd be needing to hear this week.



If you look carefully, you can see the outline of a milk bottle emerging from the wood. The instructions read ...


File down to the dotted lines. You won't finish in one visit but over time, we can get this done together.




Jess can be found at Diary of a Mom, where she writes about life with her two beautiful daughters *Katie* and *Brooke* and her husband, *Luau*.

Please note that Jess has recently changed her blog's  URL (along with her family's names) in order to restore her their online anonymity. Please remember to change your bookmarks to the new address.

Thank you! 






Home Again, Home Again, Jiggity Jig

It seems when I come to HP with typing fingers at the ready each month, my mind is always somewhere in the vicinity of Addie’s school.  Her school is the kind of suburban public school that college undergrads majoring in early childhood or elementary education envision.  This vision gets them through finals and student teaching.  It’s in a small, relatively safe, if somewhat slower community, just at the fringe of a metro area with size and pace enough to satisfy the leisure hours spent outside of a classroom. 

Many, if not most, neighborhood families stroll there from only blocks away, still wiping toothpaste off chins.  The School Choice program has brought yellow school buses from deeper in the city to the morning and afternoon outdoor snapshot, broadening the definition of community indoors.

The few buses that idle in front each morning are an extreme draw for my Addie.  Though I’m not certain she could fully articulate with sign or with her communication device, I have pretty substantiated reason to believe I know of at least 3 reasons for this.  When the glass bus doors are closed, her own sweet reflection is cut clearly into the door on a sunny day.  Nobody loves looking at Addie more than Addie (though many come close).  Second, the highlight of any field trip to date has been the bus ride there and back.  She has scant opportunity to board the revered transport, but really seems to respect the bus in general.  And lastly, one of these buses brings her friend Mike, another brings her friend Nicholas.

There are reasons I love these giant idling sunny colored tubes, too.  I love them because of the freedom of choice they represent, because on them, they bring ethnic, cultural, socio-economic diversity to the building that quite frankly, would not be there otherwise. And might not be in the neighborhood schools these kids would attend were there no Choice.  A cold truth. I love these buses because they bring some of Addie’s friends, because they bring some of my own friends.

Last fall, Addie picked a favorite bus door to admire herself in every morning.  Any given day, a glance to the left of her reflection through the windows reveals three young boys, 6 or 7 years old, as they wait with the driver until school staff comes to get one of Addie's kindergarten classroom pals.  The other two young students stay on, attending the other elementary school in our district.  I don’t really recall exactly how it began, but as Addie kept herself company standing in front of the closed glass doors, I began to keep company with the fellows on the bus. The windows are closed up – they could not hear me and I could not hear them.  To pass the minutes before the bell for all of us, I began counting the little guys in sign language.  “1, 2, 3.”  They mirrored me.  Then I added a few further signs gradually.  “1, 2, 3 boys.”   They mimicked for a few days.  “1,2,3 boys on the yellow bus.”  They giggled and held their hands up signing along.  This was over time, a single new  sign each day.  When we reached our final phrase, they no longer mimicked me, but signed in unison, often being the ones patiently waiting for my attention with their signing hands in the air.

“1,2,3 boys on the yellow bus going to school.”

We did not exchange a single verbal word.  We just signed the same thing each day. They never doubted their understanding of the meaning.  Nor did I.  All of us relished this small ritual interaction. One day, Addie tore herself away from her reflection and signed along with us, giggling.  I could see one young fellow excitedly mouth “we taught her!”  I mouthed back with matched enthusiasm, “No, she taught us!”

The driver of the favored bus forged a liking for Addie, but made the mistake of getting too intimate.  She began opening the doors to exchange waves with Addie, not realizing the smiles thus far have been intended for Addie herself all along, and not actually meant to pass through the glass.  From then on, each morning doors would open as we sidled up. Addie lost interest.  She did not want to twinkle and gleam at the driver; she wanted to twinkle and gleam at herself. 

She picked another bus, this one with tinted thick windows and no chance of making a new set of friends for me.  Balance issues worsened by inattentiveness and a tendency to bolt make it imperative that I stay within radius enough to afford quick reaction time.  Thus, I could not go back to the bus with my chums on it if Addie was to be otherwise engaged.  We remained at the new bus for a few weeks.

Winter fringe benefits intervened with distraction for our girl – snow.  She loves everything about it, particularly munching on it.  My own winter distraction comes from the busy-ness of it, the increased work load and flurry of details. While much of it is happy work, there is an underlying strain of complication and even isolation in the cold season that I must keep at bay.  Watching Addie in the snow helps. So the morning buses and their sweet cargo were disregarded all through the frosty months until this week, when most of our snow was relegated to small, dirty, unsatisfying piles.  First thing Monday morning, Addie determined she and I would return to the buses. 

Still, I didn't dare hope.

She led us directly to the original bus, to our bus.  It was still chilly enough that the driver did not want to prop the doors open, so Addie got to enjoy her shiny reflection in the glass of the doors again.  To her, all was as it should be.

I stood bouncing on my toes peeking in the windows, waiting for the 3 boys in the bus to disengage from their rowdiness and, what?  Come back to me.  Yeah, probably that.  One fellow looked up and out.   The sudden happy rounding of his eyes felt like a strong warm gust ushering me in. I heard my own quiet throaty joyful sound.  He quickly rallied the others.  Within seconds, there were 3 expectant moon faces mere millimeters from the windows in glad anticipation, 6 poised hands in the air, forming the initial hand shapes of our common mantra.

1, 2, 3 boys on the yellow bus, going to school.

The 3 boys, who had not forgotten even one nuance of our sentence in the 3 month hiatus, led me through the chant.

I was home again.  Home in hope and promise and possibility.  Home in communicating in alternate ways.  Home in the simplicity of relationships across age, cultural background, interest, ability.  At home in seeing things for what they are, not for what they are deemed through judgment.  At home in the belief that there is a default state of connection between people….

… just because they are people.

Addie and her sister built this home for me.  And in times when I wander from it, when I cannot see my return path clearly, they always lead me back.

I'm Not Special

So many times people have said to me what a wonderful person I must be to want a child like Ashley – so patient, so committed, so…special. Hearing those words always irks me. I don’t feel all those things – I don’t feel like I deserve any special recognition for the life I have chosen.

Before Ashley came into my life, my parenting was a pretty easy job. I had my birth son, Chip, and he has always been a great kid. Even now that he is 19years old, I’ve never had to deal with issues much more complicated than the occasional smart mouth. With Chip, I’ve had it pretty easy as a parent.

But, I think God knew I was capable of handling more. Maybe He even felt like I was getting lazy and not realizing my potential to do something positive in this world of His. That’s why I believe He chose me to parent Ashley.

Having Ashley as a daughter has made me a better person – one who has cast aside the ennui, and resolved to make a difference in the world. I have learned to stand up for myself and for others. I have learned that people, sometimes even one person, can make a huge difference. I have learned that if injustice is allowed to continue, it only festers and grows more widespread. I have learned compassion, and I have learned how to tell that from pity. I have learned to love with a depth I never knew possible, And, I have learned how to support another human being without compromising their personal independence.

I am not special, but I am Ashley’s mother, and she makes me feel special each and every day.


While the following piece from Erma Bombeck contains some phrases that today are considered less than politically correct, it is still a very powerful statement. If I could change anything about it, it would be the title.

The Special Mother
by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."

"Forrest, Marjorie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied.

She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

"And what about her Patron saint?" asks the angel, his pen poised in mid-air.
God smiles, "A mirror will suffice."

Sunday, March 14, 2010

The Soundtrack of Our Life

There are so many things about my autistic son, Jack, that I absolutely adore. He is smart, he is cuddly, he loving and unique. He has a wonderful way of seeing the world that both amazes me and makes me laugh.

One of the things that entertains me to no end, however, is his constant humming. I am always aware of what he is currently obsessing on based on the tune coming from his pursed lips.

He was really into Star Wars for a while, so I would hear Darth Vader's theme music floating around Jack as he absentmindedly sat in the car or did his homework. Then he was into Harry Potter, so he would hum a pitch perfect rendition of the Harry Potter music while playing with his Legos.

He is currently very interested in Super Mario Bros. Wii and will now hum that all day long. It is absolutely fascinating to me how he picks this music up. I barely notice it, but he hears it, appreciates it, and then replicates it.

He even changes the music based on which level of the game he is thinking about. Each level has a different tune. Jack knows this and has figured out how to hum each of them. I will ask him what he is humming and he will tell me, "Super Mario Bros. Wii world three."

I am especially astounded by this because no one in my family is a musical person. I think I might actually be tone deaf. I appreciate music, but am incapable of reproducing the nuances of voice, rhythm, and tone that he can. For Jack, this is intuitive.

I'm sure the humming annoys some people. I am actually a little surprised that it doesn't bother me as well. I have a lot of sensory issues, sound being one of my biggest triggers. But Jack's adorable little voice doesn't bother me at all. In fact, I welcome it.

It is as if we are all living our lives and he is providing our theme music. Not everyone gets to live with a built-in soundtrack. I truly enjoy the fact that we get to go about our daily business with our own personal instrumentalist.

Stimey blogs about her life at her personal blog, Stimeyland. She runs an autism events website for Montgomery County, Maryland at AutMont and writes a column about autism called Autism Unexpected for the Washington Times Communities.

Saturday, March 13, 2010

Please Participate in This Study

Researchers at Claremont Graduate University and Harvey Mudd College invite you to participate in a research study investigating the well being and support-seeking of caregivers of children with special needs, of all ages and types. This research is being conducted to learn more about the nature of caregiving tasks and the impact of those tasks on well-being. The goal of their research is to bring about an understanding of the joys and the challenges that come with raising special needs children, and ultimately to help caregivers have the most positive experiences possible.

Participants will be eligible for chances to win gift cards up to $100. More information about and instructions for participation can be found at:

Breathe in and picture the word "LET " Breathe out and see "GO "

These are the words my yoga teacher spoke as she began class a few weeks ago. All I could think was I soooo need to be here! “Let it go” I say it often. What about you? Are you good at letting things go? It is wise advice but hard to follow.

“When I let go of what I am, I become what I might be”

Everyday I remind myself to practice letting go. If I get annoyed by petty problems, I try to remind myself that focusing on little irritations takes away from attending to the more positive aspects of my life. When I devote precious energy to silly irritations, I cannot use it elsewhere for much better purposes. When I sit back and track my thoughts, I understand how easily I am distracted by inconsequential thoughts.

I know that I have a lot of company in finding it difficult to "let go." Here are some tips for all of us.

*Ask yourself if it helps you to ruminate over this event or are you trying to solve some experience in the past and are reliving the past?

*Let go of “being right”. Realize that you may cling to things because they might make you feel that you have the moral high ground. It gives you a certain sense of satisfaction but does it serve a purpose? Does this other person care if you are right? Does anyone but you care if you are right?

*Understand that "Letting Go" takes practice. Things come up and do your best to let it go. As you repeat this process you will become more and more open to letting things go. You can start practicing today! It is pretty common that whatever you have let go will show up in your thoughts again. And that’s ok. Just let it go each time it shows up. It will quietly vanish over time.

*Accept reality - things are what they are.

*Let go of negative, petty and unimportant stuff.

“If you treat every situation as a life and death matter, you’ll die a lot of times.”

Dean Smith

You know what is truly important to you - don’t waste your time on the rest.

Friday, March 12, 2010


Around this time last month, I was all sorts of cheeky. My son was hospitalized for mental health issues and I couldn't stop making jokes, looking at the lighter side, and distracting myself from what was really going on.

Now, a month later, it's time to go back. After spending the month of February in the hospital, things still aren't right. He's going back today, and today I feel numb about it. I'm not sad, not angry, not anything. It is what it is. I hope this time around I don't try to mask how I feel. Numb is better than in hiding, I guess. So I'm making progress.

To be quite honest, I feel like the whole hospitalization last month was a failure because I didn't fully participate in the process. I spent so much time trying to figure out what kind of face cream the psychiatrist was using instead of actually listening to her, that maybe I missed some things. Or maybe I didn't press upon her what our needs were. Maybe that's why he has to go back now.

Only, that's not entirely true. I did tell them what was going on in our house, and I think they refused to listen to me. I hate hospitals and doctors because of that. Are there any attending docs that actually listen to their patients? Any?

The family physicians and pediatricians have to listen. Otherwise word on the street is "Dr. So-and-so totally didn't listen to me, and I'm switching doctors!" I can't switch the doc assigned to our case in the hospital. It's their call.

So we're going back. To a different hospital. At the suggestion of my son's psychologist at school. I was happy that he helped me to think straight. Getting a second opinion makes sense by me, my husband, his therapists. Something is still not right with my son, E-Niner, and we need to address it.

He no longer sleeps through the night. He no longer really sleeps. He's vigilant. Waiting for something to happen. For a sound to come. For someone to move. And then things do happen. Fish tails appear from nowhere. Ghosts start climbing our stairs. Characters from video games float in his room. And there are sounds he hears that no one else can. Either that, or I get slapped in the face, kicked in the back, bitten on my leg, screamed in my ear. So pick your poison -- hallucinations or aggression. All of it sucks. And none of it involves any shut-eye.

Last night, both my husband and I slept in his room. Both of us were there, and it was still not enough comfort for him. It's as though I need to crawl into his body and sleep for him. If I could do it, I would. I hate that physics limits us. Shit. I'm getting cheeky again.

I'm cheeky and I'm pissed as all get-out. Not sure why anger hasn't hit me yet in this way, but I'm pissed. I'm pissed that all this baloney takes away from ME, personally. Yeah, yeah. I did my grieving that my son has a mental illness; I got mad about it; I spent a long time in the Land of Not Fair. It took time, but I accept it. I'm willing to do whatever it takes to make his life as full as possible.

I sit here though, and realize, that "whatever it takes" means a TON of self-sacrifice. I'm resentful about that. Pissed-off. I think about where my life would be without ADHD, Anxiety and Psychotic Features. I see that person happier, feeling successful, feeling like an awesome mom. I could go to the grocery store on a whim. Hell, I could go to freaking FRANCE on a whim. But now? Now, I can't even make it out on a Saturday night around the corner without getting the phone call to "Come quick!"

I'm going to be absolutely honest here -- you are all very nice people and everything -- but I am actually really pissy that my entire social life for weeks on end is ONLINE. Yes, I've said it. Hopeful Parents and my own blog are where I go to party these days. Woo-Freaking-Hoo! If you could see me right now, I'd be dancing on the bar.

It's too bad virtual wine has a full bouquet of...NOTHING.

I want my life back. I want to be able to schedule a dentist appointment, as I did today, and not have to cancel it for the fifth time in a row (I kid you not) because of a crisis. I'd like to be able to schedule time to go to the gym, and not have it contingent upon whether I get a solid two hours sleep in a row at any given point during the night. I'd like to be able to carve out an hour each day to devote to writing. I'd like to be able to do my singing lessons again -- and my acting classes. I just want to be me, and I feel so squashed!

It's a choice, I know. I could disengage and do my own thing. But that would feel so much worse. I love my son more than dental appointments and sleep and the arts. I love him more than any thing and I maybe even love him more than myself. I must, otherwise how could I continue to allow my interests and passions to fall away? But I'm still pissed about it.

And maybe, not so numb anymore.

Thursday, March 11, 2010

Telling it like it is

Last week, Sylvie’s twin sister announced while we were brushing our teeth that Sylvie was Dopey—the goofy mute dwarf in Snow White and the Seven Dwarfs.  My daughter frequently assigns us imaginary roles, and this particular night we were characters in the legendary 1937 Walt Disney film.  Sylvie was Dopey, my daughter informed me, because Sylvie doesn’t talk, she smiles a lot and she does funny things. My heart sank a bit at this assessment, but it is true—Sylvie is voiceless, and she does have a silly grin on her cute flawless face a lot of the time.   Since my twin girls have turned 4 years old in January, there has been a heightened awareness that Sylvie is not like other children her age.  Sylvie’s sister asked me earlier this month why Sylvie still wears diapers.  Another time last week, I called home and found that my daughter and her papa were making “magic blood cells” for Sylvie, because Sylvie was sick. And on other occasions, I’ve heard her explain to children that Sylvie isn’t able to walk; in fact as she was helping me pick family member icons for my Facebook profile, Sylvie was assigned the stick figure girl who sat in a wheelchair.  In other words, Sylvie’s sister is well aware that her sister is “different” both from herself and other little people.  

So far this difference hasn’t been more than a curiosity—both for Sylvie’s classmates in preschool and for her sister. But at some point, I know the nastiness of people’s inability to deal with physical/cognitive difference may come crashing down on our family’s collective head, and I worry most about how it will affect Sylvie’s sister. I knew the blissful days of ignorance would not last forever, and as parents, we have been very forthright that Sylvie has some medical issues that her twin sister does not have.  But I somehow want to prepare my little one for the mean and thoughtless comments that people will inevitably throw our way because of Sylvie’s inability to talk, walk, or feed herself.  How do other families cope/prepare for the inevitable questions our children ask us about their siblings’ disabilities?

It’s not as if we’re hiding Sylvie’s disability nor do we NOT talk about it around the girls. We have gotten a little more cautious about talking about the mortal nature of Sylvie’s condition when we are holding care conferences or telling of Sylvie’s circumstances.  Sylvie’s daily seizures are almost routine for us, as are all the various personal care assistants, home nurse visits, and other care providers coming in and out of our lives.  Sometimes Sylvie’s sister calls to us when we are out of the room if Sylvie is having a seizure. Sylvie gets medicine at night, and her sister does not.  Yet, when I hear my daughter explaining to visiting medical students or social workers that Sylvie sometimes chokes when she eats, I literally get choked up. I don’t want my able-bodied daughter to bear the burden of talking for her sister.  Nor do I want her to be angry or feel cheated out of having a “normal” sister to play with.  While I know I can’t stop my daughter from having these feelings, I want to be prepared for when they emerge.  

The national Sibling Support Project seems like a great resource for brothers and sisters of people who have special health, developmental, or mental health concerns, but there seems to be a minimum age of 7 to participate in these programs.  Has anyone been part of this project in their part of the country?   When I emailed another parent whose child died of Krabbe (the disease Sylvie is living with), she thoughtfully reminded me that the surviving sibling is going through this journey WITH the parents—it’s a shared and individual journey.  I know some parents find explanations in scripture, others in more psychological or biological terms. Maybe our situation is a little more touchy, since Sylvie does have a so-called life-threatening disease (I call it “terminal”), and death may be the inevitable we have to address with Sylvie’s sister. I don’t imagine we’re going to have one big talk (like the big birds and bees sex talk that so many parents dread or skirt over).  I imagine this exploration/explanation happens more organically.     But I am curious to hear from other parents about how you discuss/deal with your kid’s disability when you have able-bodied children at home too.  

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

Wednesday, March 10, 2010

It's Katie's Birthday

March is the month of Katie’s birthday (March 8th), and if she were alive, she’d be turning 15 – a ninth-grader, attending high school with her brother David, who is a senior this year. We had looked forward to this, the only year they would be in the same school at the same time. I had imagined her developing crushes on some of his friends, the way I did with my older brother’s friends. Cancer and her death have prevented this from happening. 

It’s not easy to decide what to do for her birthday:  do we celebrate her life, or does that just bring more pain over the fact that she’s not here? If we celebrate, what is a good way to honor her memory? I try to do that in everyday life. How can I do it differently on her birthday – or do I even need to? What might comfort us? Is there even an answer to that question?

After their son passed away, a family I know used to take gifts to the kids at Ronald McDonald House on his birthday. It was a lovely tradition, and a generous way to share what they would have liked to give to him, with others.

We’ve taken balloons and flowers to Katie’s bench in our town’s waterfront park, and let the balloons go. We’ve taken photos of it. Gifts have been given to the Katie Gerstenberger Endowment for Cancer Research. We’ve talked about a lot of things, but nothing seems to fit, because she’s not here. That makes sense, and I understand the facts. But that understanding doesn’t make it an easier day.

I’m grateful to have had the privilege of being Katie’s mother. I was blessed to conceive and carry her in my body, to deliver her and nurse her. I got to be a teacher, guide, companion, caregiver, coach, cheerleader, assistant, mentor and intimate friend. I got to spend more time with her on this earth than anyone, and for that, I am truly thankful. I try to remind myself that it could have been even less than 12 years.

But it will never feel like enough.

This month, I’m preparing to do one of the biggest things I’ve ever done, because of Katie:  I’m going to Indianapolis to speak at the Hope and Empowerment Event, which is being put on by the Henry Tucker Foundation. This is a conference about pediatric cancer, designed to raise awareness, support for families (and research), and to encourage hope. The keynote speaker will be Patrick Doughtie, the author of “Letters to God” and co-director of the movie of the same name. Patrick is bringing the movie to the Hope and Empowerment Event for a screening. He will be the keynote speaker, and then we will break into smaller sessions; that’s when I will speak. Parents, doctors and hospital staff will also speak. We are going to share what we know in the hopes of empowering others on this journey of childhood cancer and/or grief.

I’m excited to do this, out of love & respect for Katie (and caring for the kids and families who are still facing cancer); it’s a privilege to be invited, and it seems to fit well with celebrating her birthday and her life. If you live in the Midwest and would like to attend, you can find out more by following the link (above) to the Henry Tucker Foundation’s website.

You can read more on my blog:

Katie’s Comforters Guild’s blog is:


Tuesday, March 9, 2010

I just want to go with you

There's a song I sing to Schuyler sometimes, primarily when she's going to sleep. It's funny, because she's ten now, which is clearly getting a little old to be sung to sleep by her father, and on most nights she climbs up into her high loft bed and goes to sleep on her own. In some ways, she's fiercely independent, and she grows more so every day. But occasionally, she'll curl up next to me on the couch, and I'll sing the same song I sang to her when she was much younger, an Eels song called "The Stars Shine in the Sky Tonight". It's not a kid song, not at all. But it's ours.

I think a lot about the future, one in which Schuyler is alone, without her parents, making her way in a harsh world that doesn't care about her disability. It is the thing that keeps many of us awake at night, parents of children with disabilities who feel like we're the only thing that keeps our kids from being devoured.

But then I meet the other parents, the ones who are fighting the other fear, the ones whose kids face a more immediate fate. I met some of those parents at a conference where I spoke last summer, and it put my own life and my own fears into perspective.

I can't live in a world that you have left behind
Seen a lot, been through too much
But this is where I draw the line

It's not where you're coming from
It's where you're going to
And I just want to go with you

Protectively, as a parent who only wants the best for my child and who worries about her when she's on her own, I never want to face the thought of leaving her behind. But selfishly, almost shamefully, I quietly hope that I never have to be the one left behind. I don't know how she'll make her way in the world without me, but I know she will somehow. But I'd never make it without her. And that fear keeps me up nights, too.

December is a lonely month
In a year of lonely days
It's hard to tell which way is up
Or down or out
Or through the haze

People cheat and people lie
While you just watch it all go by
Counting days until you die

I don't know what the future holds for Schuyler. None of us know. I remember speaking to a college acquaintance who suffered from what was supposed to be terminal cancer. She told me of a friend who had reacted to her cancer diagnosis with real sorrow and sympathy. He'd grieved with her, and for her, and had spoken to her of how he couldn't imagine a world without her in it, and then soon after was killed in a car accident. She attended his funeral, and her own life moved quietly forward, and still does to this day, almost twenty years later. You just never know.

Fate, God, Life, whatever it is, it doesn't show its cards very often, and it has a taste for the unexpected.

I watch other parents of kids with disabilities, and I see how they face the future, the one they fear and the one they try to understand. I face it myself, with varying degrees of success. I fear a future where she walks alone without me, and I also fear a different future, one where she leaves me behind. Both are too big, both are too much, and so I try to live instead in the present, in both the quiet moments and the rowdy ones, where I can see what I have before me, and love her in this moment.

Fear is a monster. I fight it sometimes. The rest of the time, I ignore it as best as I can.

The stars shine in the sky tonight
Like a path beyond the grave
When you wish upon that star
There's two of us you need to save

It's not where you're coming from
It's where you're going to
And I just want to go with you

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


Monday, March 8, 2010


I have an appointment this week, an appointment that may give us some new  insights  or may just create more questions.

Fudge has spent a number of mornings recently with a wonderful man we will call Dr. A. Fudge says that they  played games, ripped paper, had snacks, talked about stuff and coloured pictures.  Fudge enjoyed his time with Dr. A and each time they we went to see him I spent a couple of hours waiting for him.  I sat in uncomfortable chairs and wondered about how things were going. I was not allowed to participate, instead I thought, I blogged, I wondered about whether this process would make a difference in my sons life.

Fudge had a diagnosis when we first met him, they said he had ADHD. As we got to know Fudge and as he got to know us it became apparent that there was much more going on for him than ADHD. In fact we questioned whether or not that was the right diagnosis or not.  We began to wonder about other things. We were supported by his therapist who worked really hard to get a complete neuro-psych evaluation  done with one of the best child psych’s in the area. We were blessed to have in done with in weeks of putting the request.

All the questionnaires are filled out, all the testing is done and now we just have to wait for Thursday morning.  There are a lot of feelings wrapped up in what I may or may not hear at that meeting.

I am not sure if what we hear will make any difference at all in the life of our son but I hope that it will. I hope that it will bring some clarity to what seems to be rather foggy situation. It is hard to see through the fog and it would be nice if we had some extra lights, some lights we could shine on the curves so we can see them coming  would be great. We don’t need  search lights, flashlights will be good enough.

J. writes at Stellar Parenting 101 were she talks excitedly about the coming of spring, 2 great boys and the challenges that come with being a Hopeful Parent.

Saturday, March 6, 2010

Good In This World

I wanted to share a story of a recent trip our entire family took to Kauai.  It was a wonderful trip for the most part, that could have easily been overshadowed by the craziness that was our experience of trying to get home.

We had a red-eye flight booked and were nervous enough about the prospect of the kids only having five hours in which to get their night's sleep.  When the flight was delayed until nearly midnight, we tried to put on a cheery face and make the best of it by returning to our resort for an impromptu, moonlit picnic on the beach where my youngest fell into a deep slumber on one of the lounge chairs. 

Kids are so lucky to be able to fall asleep like that; tolerating transfers to and from rental cars, and even managing to stay asleep through security...and for the next four hours that we were trapped in the Kauai airport before they finally called 'uncle' and decided it was time to shuttle us all to a local resort...the same resort we'd been staying at for the five days prior.

My older son, M, has severe autism.  This makes for an added layer of excitement when traveling.  Oddly enough, he did much better on the long flight to Hawaii than his typically developing little brother did; a fact we commended him on many times throughout the trip.  And to our surprise, he was a total champ with the flight's delay and even finally fell asleep in his chair as we waited--and waited--for the news on whether or not the mechanical problem they'd reported to us as we were literally a step away from boarding the plane, was going to be fixed or not.

I think all 130+ of us did a relatively good job of remaining calm and lighthearted through this annoying wait.  My husband quietly chanted, 'Go, Sully!' after the captain told us he was a husband and father of five and a (chuckle) 'safety guy.' (Gosh, I hope all pilots are 'safety guys!) I mean, none of us wanted to fly over the Pacific ocean on a faulty plane...but there did come a point where we all realized we weren't getting on that plane that night, so why didn't the airline come to the same conclusion before 2:45 in the morning??

By this time, some people were getting restless.  The not-very-customer-service-oriented airport workers didn't quite think their plan to get us to the hotel through very well.  They decided to let the first class, platinum status, and people with special needs leave the gate area to collect their baggage first.  Oddly enough, our family fit all three criteria...we were on our way to getting the hell out of there, finally!

But they didn't give us time to actually wait for our luggage on the carousel before they let all of the other people out too...and so, the free-for-all ensued as people rushed and pushed, attempting to grab their luggage before the rest of us so that they could get a better spot in line for the shuttle.

 The other half and I were holding about 90 lbs. of sleeping children, two carry-ons, and pushing a cart with three pieces of luggage.  Our backs hurt.  We were tired.  And when about 20 people...none with young, sleepy children, mind you...cut in front of all of us and refused to acknowledge the few passengers who were willing to stand up for what was right and tell them to get to the back of the line, I started to feel that burning in my throat I always feel when I get myself upset about people behaving unjustly and unkindly to their fellow humans.  

M must have felt the unrest, too, because he woke up in the other half's arms at this point, very confused and upset by what was going on around him.  The other half quickly wisked him to sit on the sidewalk away from the line as people stared unabashedly at him.  Now the burning in my throat was turning into tears as I held back from screaming at these people, 'You have no idea what this amazing little boy has accomplished by holding it together for these past four hours!!'  So instead of making my own scene, I decided to be proactive...I approached the airport employees and told them that my son with autism had done amazingly well thus far, as had the other small children patiently waiting at this ungodly hour with their families.  I told them that I knew this situation wasn't their fault, but that they had to take control and allow the people with special needs and young children to get on that bus (wherever it was) before the rest of the passengers. 

I took my place back in line and noticed a woman rushing over to the same airport employees.  This same, kind-faced woman had been smiling at M much of the time we were in the waiting room.  She asked the employees where the little boy with autism was, and they awkwardly pointed to M who was still wailing and confused with the other half.  My husband came over to me after that, handed me M and took B in his place and said, 'This kind lady is going to take you and M to the hotel so that you can check in before everyone else gets there.'

I lost it.  Totally, freaking bawled my eyes out, right then and there.  In this crowd of people--many of whom couldn't give two shits about anyone but themselves--this woman made sure to help out someone she knew needed it.  I gave her a huge hug as I attempted to collect myself and get us into her husband's car.

It turns out that this couple was from Texas--or the mother ship, as I refer to it.  The place where I am from, and where my heart still longs for at times like these.  Her husband is a traveling orthopedic surgeon and they were living on the island for a year.  Nancy, the woman who 'saved' us, told me that she worked with kids with special needs for many years.  

I gave them both enormous hugs--hugs that felt like I was hugging my own parents--and thanked them from the bottom of my heart for helping us out.  M had gained his composure by this point, as had I, and we were able to check into our hotel room before the long line of  passengers arrived.

I still can't recall the story without getting a little choked up.  It sounds like such a small thing, but it was really an enormous gesture that helped restore my faith in humanity a tiny bit.

So, to Nancy & Dave of Cedar Hill, Texas...bless you.  I hope you know how much your kindness meant to my family.


Mama Deb attempts to be grateful often at This Is My New Normal.

Friday, March 5, 2010

A mess of toes

Note: this is a second post containing references to "The Christmas Song." For context please refer back to this.


We used to wrestle a lot. Push and pull, laughter, assisted crashing onto the futon and pillows. John has experienced now that the push and pull and laughter can come from words. Sometimes where we would have wrestled before, we have a little conversation that goes as long as his patience. It then folds into either wrestling, or John deciding that it is time to leave the room and commence playing for the day.

"John, what are your favorite foods?"

"Oatmeal cookies."

"What else are your favorite foods?"

"Animal cookies!"

"Okay, what else are your favorite foods?"

"Turkey. And some mess of toes!"

Having recently introduced tiny sliced turkey squares into his lunch, I am feeling successful for a moment. Look at this feeding progress; he already says turkey is one of his favorite foods...wait a minute.

"Mess of toes?"

"Turkey and some mess of toes. 

"What's a mess of toes? Are you being silly?" (me, inviting sillytime)

"The foeff everybody knows!" (he, resisting sillytime because communication is coming first this morning)

"What's a foeff?" He's working up to something good, I just know it. 

"The foeff everybody knows!" 

I'm trying to figure out what a foeff is, but I can't stop myself from repeating, "Toes, mess of toes...." The easier prize seems to lie there.

"OH!!! You said turkey and some mistletoe!" I start laughing, hard. He joins in but not for as long.

"Your mouth is open while you are laughing!" Fascination with Mommy's open mouth, bordering on disgust.

"Turkey and some mess of toes!" he says to make me laugh with my mouth open again. I do, then stop....

"Wait. Everybody knows a turkey and some mistletoe...wait a minute, when you said foeff were you saying FOURTH? What's the fourth line of that song? One Chestnuts, um, two Jack Frost, three Yuletide mumble mumble.... fourth EVERYBODY KNOWS! How did you know that?"

Innocent smile from John. Look of patient happiness that Mommy has finally gotten it.

This is like getting close to solving a jewel heist. Some people are happy that their kids can multiply three digit numbers at age 5. I'm excited that I can figure out that he has the lines of this song numbered. If the song had three digits worth of lines, I don't think I would have been able to follow the mystery long enough.

John, observantly: "You stopped laughing."

Then with a bit of wish: "You stopped laughing."

So I laugh again. He laughs too, easily.

"You know John, your mouth is open while you're laughing, too." 

He puts a tentative finger to his exposed front teeth.

I think foeff is important. But John has moved on to uncovered teeth. The beautiful moment of laughing mystery word tension, has passed into quiet.

It's okay though. I won't miss hearing about a mess of toes. Because at perfect moments throughout the week when toes are mentioned seriously (such as at the orthotist), thanks to some story from preschool, John will predictably holler:

"Whooz GOT my HAIRY TOES!"

Thursday, March 4, 2010

Back! Unfortunately with 100% more muffintop...

   First off, I apologize for missing my day to post last month.  Life has been interesting.  You all know how that goes, I'm sure.  Things have settled down to a dull roar now, and we're to the "aftermath" stage.  To wit:
   I weighed 130 pounds when I got pregnant with Big Child, and by the time I waddled into Labor and Delivery thirty-five weeks later I was 200 pounds even.  Yeah, I was that woman.  Five months of bedrest is a LOT of boredom snacking, y'all.

   It took me eighteen months to lose the weight.

   I started my pregnancy with Middle child at 130, exercised religiously, ate healthfully and still went back up to 200.  Apparently that's just what my body does.

   Because Middle Child was a screaming bundle of ear-infected outrage and most of 2004-2006 is a blur to me anyway, I really couldn't tell you what I weighed when I got pregnant with Little Child.  It probably wasn't any less than 170 though, seeing as how Middle Child was only four months old at the time.  Whoops.

   At least I only gained thirty pounds during that pregnancy; my body seems to feel that 200 is a nice, round number to end a pregnancy at, regardless of gestational period.

   By the time Little Child was three months old, I was down to 125 pounds.  People raved about my miraculous weight loss, and asked me what my secret was.  I told them it was called the "OH MY GOD MY BABY'S GONNA DIIIIIIET" and that I didn't recommend it.  It consists of very little sleep wrapped around a critically ill newborn in a hospital crib (one night when Little Child and I were both inconsolable a very kind older nurse put her arm around me and my bundle of squalling, swaddled misery and said "you know, those cribs can hold up to two hundred pounds..." and it was the best night of sleep I ever got, even if it was only five hours and I woke up to a herd of residents staring down at me, braless and drooling, cradling their patient) and an ocean's worth of nurse's station coffee. 

   In the wake of my separation and during my divorce, I got rather zaftig again, then developed insulin resistance, got serious about diet and exercise, and got in the best shape of my life through running and yoga.  Of course, THEN I had a couple of major surgeries last summer, and while I initially lost a lot of weight (peritonitis: almost as effective as the "OH MY GOD MY BABY'S GONNA DIIIIIIIET!"), I strayed from the path of dietary and exercise righteousness and haven't been back since.

   Here lately I've developed a bipolar mixture of "fat and happy syndrome" (when you marry your soulmate, who also happens to be a chef, that is what happens) and "stress-eater's muffin-top" (when your ex decompensates in the wake of your remarriage and you spend your wedding night in the company of CPS workers, that is what happens) and something's got to give.  I'm not telling you what I weigh right now.  Less than what I weighed when I gave birth to my children, and more than what I weighed after the "OH MY GOD MY BABY'S GONNA DIIIIIIET."  I actually don't know, because we don't own a scale; we only get weighed at doctors' offices.  But it's time to lose a few pounds and get into better shape.  Maybe even put that YMCA membership to good use again...

   Do you gain or lose weight when you're under stress?  Any tips for me?  Let's talk.

MFA Mama can usually be found at

Tuesday, March 2, 2010

The Changing of the Shoes

My husband looked up from his computer. “When are you going back to work?”

“I’m not.” I answered, finishing my email. I am not. The words came out of my mouth before I had a chance to catch them. They hovered in the air, waiting for a reply. I finally had the nerve to meet his eyes. He looked at me and nodded. It was agreed. His eyes went back to the screen. I paused and looked the ceiling, watching the words I just uttered dance across the lights.

My gaze turned back to my computer. I typed to the tune of my daughter’s heart monitor as we sat and waited in the ICU of Children’s Hospital.

What did I just commit to? The fact that my 6 month old was so sick and we were both answering work emails was ridiculous. Someone needed to bite the bullet. Someone needed to be at home with her. I knew that someone was me.

I had always entertained the idea of being a stay-at-home-mom but once those words…I’m am not going back to work ,  vomited from my mouth I felt like I had lost myself. I had lost ten years of ladder climbing, schmoozing, selling, getting on the managerial fast track…I had just committed career suicide…identity suicide.

Who am I if I am not working???

Truth was I didn’t even like my job. I wasn’t saving lives or changing the world. I worked in marketing….trying to convince people to buy things. My daughter was very, very sick and I was negotiating with clients who were trying to convince people to buy thingsImportant things….garden gnomes, aprons with cute sayings, fart machines…life changing items.

But it was what I did. What do you do Heather? Well, if you must know, I am a marketing consultant. I work closely with companies who specialize in creative outdoor curios.  

Curios….that’s a code word of outdoor crap. Even though I didn’t really like what I did, there were parts of my job that I loved.  I loved lunches, pricey coffees, office gossip and those outrageously expensive business trips. Not those in-the-middle-of-Kansas trips but those to fabulous places, with fabulous results.

When Samantha was four months old, before she got sick, I had to go on a business trip to New York. I coordinated her care with my mom and husband. I cried as I said goodbye. I felt guilty and called myself a bad mom…..

And then I got on the plane and took a four hour nap. I then took a taxi to the Waldorf in Manhattan, checked in, changed into my pajamas. I ordered room service; a lovely shrimp scampi paired with an oakey Chardonnay and watched four hours of back to back episodes of Sex and the City.

I woke up the next morning after having the best sleep since my pregnancy. Room service brought me an omelet, fresh orange juice and coffee. I ate, uninterrupted, still in my pajamas and watching the Today Show

My shower lasted twenty minutes. I shaved parts that never needed to be shaved; because I could. I cleansed exfoliated, moisturized, and doused myself in Aveda products. No baby shampoo here. I sang, loudly. I did not have to listen for my daughter. I did not have to keep checking on her through the shower door.

I called my husband and pretended to feel guilty about a 2 am feeding. This was difficult because the Waldorf in Manhattan does not recognize 2 am feedings or poopie diapers or projectile vomiting. They only recognize things of the fabulous and sexy sense.

Dressed in a black silk suit and kitten heels, I marveled in the fact that my jacket showed no signs…what so ever….of baby slime.

I was fabulous in the meeting; witty and charming. I closed the garden gnome deal. Our team celebrated at a restaurant off  5th Avenue. Everything was racked up on my American Express corporate card which I whipped out with authority. No, really I got this one….

Two months later, I sat in two-day underwear in the ICU at Children’s, watching over my daughter. I was feeling very un-fabulous, sad, beaten down. I did not care about my garden gnomes.

I must stay. My clients love me, they need me.

My daughter needed me more. I knew I was doing the right thing. Samantha needed someone to scour the internet, interrogate the doctors, ask questions, write down answers and ask questions again.

But I couldn’t help but be sad about a decision that was not mine, a decision that came out of necessity. I missed my kitten heels.

I protested for a while. I wore only sweat suits and refused to shave my legs. I traded my United Airlines Visa card for a Grocery rewards card. I watched a lot of Oprah.

I also focused on my daughter, her care and realized the job I was now doing was life-saving, life-changing, life-altering. I wrote, I advocated. I discovered the sweet, sweet world of the afternoon nap.

Perhaps there is life beyond the creative outdoor curios. My new feet no longer fit my fabulous kitten heals. They were traded for a pair of sensible Merrells. I no longer buy any outfit that requires dry cleaning. The silk suit however still has a special place in the closet…hoping for another Manhattan date.

Heather is mom to Samantha, parent advocate and free-lance writer. You can follow her at

Monday, March 1, 2010

How You Can Be the Best Caregiver for Your Child with Special Needs

How can families best care for themselves and their child?  My daughter has multiple disabilities.  Primarily we’re facing autism and kidney disease.  But she has the “combined type” of autism which includes ADHD (Attention Deficit/Hyperactivity Disorder) and LD (Learning Disabilities).  As her kidney function decreases, she has developed hyperparathyroidism (thyroid), hypertension (high blood pressure), hypercholesterolemia (high cholesterol), osteodystrophy (bone disease) etc.  She also has spina bifida, scoliosis, and vision/hearing/dental problems. 

Ok so now that you have the picture I’ll tell you how I deal and hopefully it’ll help some of you parents out there.  The first thing I did when she was born was call every kidney disease organization listed in the Exceptional Parent Resource Guide.  When we received the secondary diagnosis of autism when she was 7, I felt a little overwhelmed until I thought back to what I did before…then I called all the autism organizations in the EP Guide.  Also, if your child has an uncommon condition like mine, you can call the National Organization of Rare Disorders.

Everyone deals with things differently, but I found out the more I knew about her condition, the less I felt helpless and hopeless.  Once you know what options you have for treatment, you can make educated decisions about your child’s care.  Families who have information are empowered.  They don’t feel as stressed.  They don’t feel like they’ve lost complete control of their children’s lives, but rather can partner with professionals in joint decision-making. 

Sometimes though, families also need to talk to other parents.  Besides Parent-to-Parent matching, I would also recommend support groups.  There is actually a listing of all support groups nationally through the American Self Help Group Clearinghouse.  There’s nothing like getting support and ideas from other families who’ve “been there.”  

By getting information and support they need, families can take the best care of their children with special needs, as well as themselves.



Exceptional Parent magazine call (800) E-PARENT for a free pocket guide

National Organization on Rare Disorders (800) 999-6673

Parent-to-Parent (click on “view U.S. Map)

American Self Help Group Clearinghouse