Saturday, July 31, 2010

On the outside

Do you have a minute?

Are you comfortable? Can I get you anything? Coffee? Ice green tea? Maybe a glass of wine? I’ve got some but I can’t vouch for it. It’s been sitting over there on the counter for a while. Weeks, re-corked by still. I can offer you a fake beer? Not quite the same as a real beer but not half bad. We call them beverages in our house, as in, Honey? Can I get you a fake beer beverage? Or water? That’s what we drink: Coffee, green tea, water and fake beer beverages.

I can’t be drinking the wine anymore because sometime during the first glass I start to get hung-over, the dehydration, the hazy smile like I’m looking at you through a mist, the slight headache and then the creepy fatigue like I’ve been dipped in serum and it’s wicking up my legs. I drink the very, very occasional glass like last night when I was upset because my son said he hated himself so much he wanted to kill himself and that made me deeply scared and sad because we don’t use that expression here, we don’t say, I’m so upset I want to kill myself, we just don’t, so why did my dear little nine year-old Fluffy say that about himself?


I’ve long known Fluffy’s growth goes in cycles, he goes up, levels off, starts to fall down, bumps along on the uneven ground and then climbs back up again. I’ve been able to see that once the whole cycle is complete, there is often new growth that stays. Overall, if I was to chart the data, I’d see that he is progressing, growing, learning, changing, just like any other kid. Scratch that. Not just like any other kid. But still, learning happens. Change happens. I used to cycle right along with him, my mood inextricably linked with his no matter how much self-help I’ve ingested over the years. Now, I have enough faith in the cycle to not completely panic when the shit hits the fan and the shit doesn’t hit the fan anymore, well, okay, it does but it’s more like little nuggets of poo rather than buckets of, well, you know, buckets.

Until he spoke of killing himself.

Maybe it’s hyperbole? The stuff of ‘tween talk? Lord knows Fluffy is sounding more and more like a ‘tween with his high drama exits from the room, I CAN’T BELIEVE IT!! MY GOD MOM! stomp stomp, clang clang, boom as the door to his room slams shut. He mutters, Whatever, repeats what I say in a mocking tone, rolls his eyes in exasperation. I don’t know where he gets it; he isn’t in school, doesn’t hang with the big kids. He’s clearly been programmed in utero and now the timer has gone off, little shuttles of tRNA zip up and down the genome, turning on and off 'tween genes.

Maybe that's what's responsible for the latest assortment of behaviors that add up to the latest acronym following oh those many acronyms (ASD, AS, SIT, SID, OT, SLP, HANDLE, RDI, NHA, VT). 


Take the water bottle. The water bottle slung over his shoulder on a strap like Robin Hood, the one he fills to overflowing and then fills with drops captured by the cap and then screws cap on in a particular way and drips the water stream through the drink hole. The one he secures with the plastic lid, careful to line up the bump over here precisely 180 degrees from the horizontal line there. The water bottle he wears everywhere all the time including in the middle of the night when he gets up to pee but never drinks out of.

If I drank from it, there’d be less in the bottle, Mom. And then I wouldn't feel safe.

It’s his security water bottle, he explains. Okay, but now he won’t go outside in the sun, for a walk or a bike ride, for a ride in the car to the pool or the pond or the sprinkler park because it’s too hot and he’ll need to cool off by drinking water and he can’t drink from his bottle so we need to stay home, Mom, let's stay home all day.

The temporarily solution: fill an additional bottle. Now he has two. One for safety; one for thirst.

Okay, I say. But you’ll have to let me fill that one up.

No! No! I’ll do it. It has to be all the way full! So it doesn’t make any sound when I shake it. (He shakes the bottle, shake shake. Listens. Shakes it again. And again. And again.)

What are you doing, honey?


But you just checked it.

I know.

Then why did you do it so many times in a row?

I-I-I. I don’t know. I just had to.

He fills it up. It takes about five minutes. He finds a sling for it. It goes over the other shoulder and out we go.

Now he has a rock that must travel with him, a special rock that he charges with additional Reiki every evening at bedtime. My rock means the world to me, Mom. 

He talks about its healing powers quite a lot. The Reiki rock is cool to me and maybe to other grown ups. I’m glad he takes that time at night to concentrate, close his eyes and focus, breath deeply. But when he talks and talks about it to another kid, when he sticks out his hand, opens his palm to show off his super cool magic healing rock that is ultimate and legendary, when the other kid grabs it for a closer look, when the kid doesn’t give it back and Fluffy lunges for him, screaming and crying in outrage, knocks him down to the pavement and the giant needle scratches across the record and time stops and every pair of eyes at the ice cream parlor stares in alarm, well, the Reiki rock doesn’t seem very healing to me.

Yesterday he started wearing it in a tube on a string that goes around his neck. With seven pennies stacked inside on top of it.

Why pennies? I ask.

I don’t know, he answers.

Why seven? I ask.

I don’t know, but it HAS to be seven, he answers.

There’s a local writer with a son on the spectrum (Asperger's, I believe) whose family was featured in a documentary I saw last year. At the end of the film, she got up to answer questions, speak a bit about herself and her life and she said a few things that really resonated with me. She said, and I paraphrase, that she didn't want people to feel sorry for her, didn't want them to feel sorry for her son, didn't want others to think of their situation as terrible or tragic. But she also didn't want them to think it was no big deal either. 

She said, there is a way that she will always feel other, always feel apart from families with neurotypical kids. She said it all without pity or resentment, more like, Look, listen to this, let me read to you from my newspaper over here. Let me tell you what is says. 

It took over a decade for me to get to be a mom. And I love it. Love being Fluffy’s mom, love what I've learned, love who he is. But my experience since becoming a mom has often put me on the outside. I didn’t want to be on the outside but here I am, with my boy and his water bottles, his rock, his stack of pennies and all those eyes staring at us. 


Exciting Progress at Hopeful Parents -- Thanks to YOU!

We did it!

You helped us raise over $850 to pay our filing fee to the IRS so that Hopeful Parents could become a tax-exempt organization.

It took a few days for all the money to clear the bank, and I was able to mail the application yesterday. Now, we'll need to wait for approval.

Those who contributed deserve a big thank you. They've helped to get Hopeful Parents off the ground and will forever after be known as our Founding Members. (To protect privacy, I've listed first names only.)


For those of you interested in becoming members of Hopeful Parents, you can still do so. We're going to officially launch a membership program in the coming weeks. Stay tuned...

Thursday, July 29, 2010

Lilith Fair

When Riley was five, we went to see one of her school friends in a dance performance. Riley made it through the sensory overload of the show, only to break down during the applause at the end, specifically when I "woot- wooted" enthusiastically for her friend. I remember her look. It wasn't a meltdown, it was a "you don't even understand," cringing, wincing along with her cries. A silent scream. She was in pain, and her mother, whom she loved, had unintentionally inflicted it upon her.

Five years later, things have changed.

Tuesday evening, we took the kids to Lilith Fair. At one point, sitting on our blanket on the lawn, I looked over at my husband, our daughter in between us, our son Seth on my lap, and mouthed, "Did you ever think?" 

He smiled and shook his head. We were out there, having fun!   

"I'm so glad you're old enough to do something like this," I said to Riley. And by "old enough" I meant, "able to."

She beamed. She wore her white peasant skirt and a purple tank top with a glittery butterfly on the front. Her jeweled white sandals completed the ensemble.   

It certainly was loud. And wild. People were drinking. Lesbians were behaving badly. Two different couples stopped not twenty feet from our blanket to grope and dry hump each other in front of our children. 

Side note:

Man/woman, woman/woman, man/man...doesn't matter a bit to me, but I happen to think dry humping is something to be done in private, with that special someone(s).

We used it as a teachable moment, told the kids how people who are hurting often need to draw attention to themselves. We made sure they knew this wasn't representative of gay people, and pointed out the fact we know a whole lot of gay people who would never be so disrespectful. Then, as a family, we made the decision not to look at them, not to encourage them. Riley and Seth were happy to comply. Ew. Gross. Soon the couples lost interest and moved on.

It was dark by the time Mary J. Blige performed. The place was rockin' and we danced on the lawn. Seth did his Michael Jackson moves. HT did "the white guy." I did my thing, which consists of a lot of hip swaying, knees bouncing and of course the occasional hand twirling in the air like a lasso(my signature move). Riley sashayed her skirt to her own quirky rythym doing a move she learned watching the dancers perform The Paso Doble on Dancing With the Stars. We are so weird.

After Mary J. Blige, and before Sarah McLachlan, we were offered an upgrade from the lawn to the reserved seats. We took it and ended up in front of some really obnoxious young women. They screamed, and sang very loudly. So loud we couldn't hear Sarah. After two songs, Riley leaned over and politely asked, "Do we have to sit here? These girls are getting on my nerves."

Self-advocacy! No crying! No screaming! 

We offered to just go home, it was late, but no! She wanted to stay. Riley wanted to finish watching the show.  

We found new seats in a section we had all to ourselves. We told Riley how awesome she was to take good care of herself (and all of us) by requesting what she needed to make herself more comfortable. We were all much happier in our new spot and we finished out the six hour show, encore and all. The applause roared, and Riley did her own woot-wooting!

Thinking back five years ago when Riley could not handle applause at a school  performance, I never imagined we'd be able to go to a concert like Lilith Fair. There were times I wondered whether we'd ever have fun again.

Life is not always easy. She still has profound challenges and needs a lot of support. But we have days like this as well, happy, happy, hopeful days. 

Days which, truly, deserve a mention.


Michelle O’Neil has contributed to A Cup of Comfort for Parents of Children with Autism, and Special Gifts: Women Writers on the Heartache, the Happiness and the Hope of Raising a Special Needs Child. She has written for Literary Mama, The Imperfect ParentAge of Autism, Cool Cleveland and Sensory Integration Special Interest Section (SISIS) Quarterly Newsletter, a professional publication for occupational therapists. 

She has a ten year old daughter with Asperger’s and a seven year old son whose health is returning to balance after wrestling with the auto-immune issue PANDAS for a while. She’s married to the wonderful Hot Toddy and has been blogging about autism, family and spirituality since 2006.


Wednesday, July 28, 2010

If and When to Medicate

The Cocktail:

1. Scoop ½ ounce of peanut butter on a spoon (Creamy, preferably low fat)

2. Carve a little ditch in the peanut butter with pinky finger

3. Lick pinky finger 

4. Empty three 150 mg capsules of Depakote into ditch in the peanut butter

5. Garnish with half of a 10 mg pill of Namenda

6. Serve

Then there is the Levocarnitine because the Depakote strips the body of its natural carnitine. The Colloidal minerals, which are important for brain functioning.  The liquid Bs for energy.  The multi-vitamin for his immune system.  The probiotics for the digestive tract.  The prebiotics, which are food for the probiotics.  The calcium chews because the kid won’t drink milk.  And finally, the fish oil, also good for the brain.  But the real medicine, the drugs…that’s what the scoop of peanut butter is intended to help disguise. 

This has been our morning and evening routine for 5 years.  Graham is 6 ½, which means he’s been on this stuff for basically his whole life.  It sounds strange to say this about my six year old, but I don’t know my child not on drugs.

And pretty much every single time I spoon that concoction into his little mouth, I feel a pang.  That pang whispers, “Are you sure you know what this stuff is?  Do you really know the long-term side effects?  Do you even know the short-term side effects?  Is this why he’s drowsy all the time?  Is it helping?  Is it necessary? Should I take him off of it?”

Which points to one of the hardest issues a parent of a child with special needs grapples with:  If and when to medicate.

Obviously, the anti-convulsant medication was kind of a no-brainer for us:  He was having detectible seizures that could become dangerous.

But the Namenda was a choice.  An off-label choice.  And it was a risk. It’s an Alzheimer’s drug.  There are virtually no studies on the effects on kids.   But our doctor, in whom we have great faith, has used it with a lot of her kids and says she and her colleagues in the medical community embrace it for kids with motor planning issues, and they are seeing great results.  She recommended it for Graham. 

The idea that this little boy who was having such a tough time sequencing the actions required to do all sorts of basic things --  put shoes on, draw and color, get himself undressed (let alone get dressed), wash himself, stack blocks – could be dramatically helped by a tiny little pill, was very seductive.  And I plead guilty to having bought into the argument that if it could help even a little, it was worth it.

I realize this is a hot-button issue.  There will be parents out there who will think this unconscionable.  On the other hand, there are parents who have stopped reading this to Google Namenda with the hope that it could help their child.

Initially, I was in favor of trying this for Graham.  Then for a long time, I just went along.  Was it helping?  When you’re doing four different therapies and taking several different medications, you’re tweaking his diet, adding a dozen supplements, and he’s growing in spurts, who can say?

For me, lately, and increasingly, the pang has been growing louder.  This summer, we decided to get Graham off the meds.  Both the Depakote and the Namenda.  We think he has out grown his seizures.  And we’re hopeful that whatever benefit he’s seen from the Namenda has translated into improved skills he won’t lose. 

The weaning off process is not simple.  It has been slow and careful, with blood-work to monitor levels, extra allowances for mood swings and sleep variations.  But I’m ecstatic to say that yesterday was Graham’s first day medication-free.

Yet this is not the end of the issue for us.  For five years, I medicated my child, and I wrestled with it.  And I’ve got more tough decisions ahead of me.  Graham’s attention span is pretty, let’s call it, brief.  And I can already see that school is going to demand much more attention from him than he presently can supply.   

I see the allure of a pill that might help him get through the day with more ease -- a pill that might help a kid, already held back a year and still clinging to the bottom-rung of his grade-level, get a leg up.  But I’m increasingly wary of the pill-fix.  And I’m beginning to back off of the belief that there even is such a thing.  It seems everything is a trade off.  And ultimately, Graham’s attention span is part of who he is: a unique kid who needs support and love, but not a fix. 

I honestly don’t know what I will do down the road.  We’ll cross that bridge when we get to it.  But I can say with great relief that, for the moment, that nagging whisper is gone.

Monday, July 26, 2010

Opening Up

Something interesting has been happening to me lately.

I guess it has something to do with the fact that we've had a year to slip into the skin of Noel's Asperger's diagnosis, and that I've become more comfortable with the idea. I've stockpiled information and don't feel quite so inundated as I did before.

Or maybe it's like when you really, really want to be (insert big life milestone here: engaged/married/pregnant/a parent) and so then you notice every single person around you who is what you really want to be. (Wait, that came out wrong, like I've aspired to special needs parenthood, but you know what I mean.)

But lately I've been meeting more and more parents of special needs children, not at special events set up for such meetings to happen, but in my regular, adult interactions. Without my kids with me. I find myself in conversations with other adults who understand. They get it. We can talk about diets and alternatives and IPPs and we can talk about those people who judge you from across a room. It is truly wonderful to not feel so alone.

So now, I feel like I really want to keep opening up those dialogues. Because sometimes, special needs parenthood feels like a dirty little secret. I wonder how many other adults I've met who are holding all this information inside but don't feel like they can share it. Because let's face it: "My son/daughter has special needs." sometimes brings conversations to a screeching halt, or worse, brings that weird uncomfortable, pity filled shifting in their seats that I would really rather skip over.

I try to insert this information in as casually as possible, blurting it out and then glossing over it. Why do I want to share it? Well, I guess I want to share it because I don't want to feel like I have to hide it. I want to participate in the 'parenting war stories' conversations but sometimes these things need a little context around them. Not every time. Not in every conversation. But lately I've been meeting other parents who are facing similar challenges in their lives and we have so much to offer each other. And if we both stay silent, how will we ever know?



Please Become a Founding Member of Hopeful Parents

Let's not beat around the bush. In order for Hopeful Parents to qualify as a tax-exempt organization, we need to pay a one-time fee of $850 to our federal government.

Are you willing to become a Founding Member of Hopeful Parents to help us meet this goal of $850?

The bottom line? We're looking for 34 people to contribute $25. If you're one of the first 34 people to join Hopeful Parents, you'll forever be remembered in this organization's history as one of our founders.

Do you have $25 to become a member?

I hope you'll consider it. We really need the money.

I, for one, would like to see Hopeful Parents lifted from electronic existence and begin advocating at the local, state and national levels. I would love to see this organization put faces with names through local and regional chapters. I have hopes for a retreat for our community in several towns across the nation, where we as parents could find comfort and solace with one another in a tranquil setting somewhere -- even for only day!

But this will only work -- we can only get to where we're going -- by taking one step at a time. We've come a long way since this blog started a year and a half ago. I don't want $850 to stop us from continuing to pursue our dreams.

Could you please become a Founding Member of Hopeful Parents? And do it today? I'd love to get this filing off to the IRS tomorrow!

Sunday, July 25, 2010

Scenes from the brain of a special-needs parent


Love how sweet Max looks when he gets up, cheeks all flushed, eyes so big. Oh. Sigh. Bed is wet. I hope he can potty train, seven years is a long time to be wearing diapers. He goes at school, so I know he can do this. It's another one of those codependency things. Gotta talk with teacher. We’ve really got to figure out a better changing station than the top of his bureau, he’s getting a little heavy to lift although he’s still such a skinny kid. Need to talk with pediatrician about how to make sure he’s getting enough calories, or maybe we need to visit a nutritionist??? Just what we need, another expert in our lives. OK, he doesn't need me to carry him down the stairs, he can walk. OK, I'll carry him. Purple bowl. Purple bowl. Where is the purple bowl, only one he’ll eat out of? Ah. Found it. I'm going to sneak omega-3 oils into his cereal, he won't notice. Oh. He noticed. There you go, underestimating how with-it he is again. Maybe Dave can try feeding it to him, he’s really better at feeding than I am because he has infinite more amounts of patience. GOOD idea, Dave, distract him with iPad and YouTube videos of car washes, Max’s other obsession. Sure we'll end up at a car wash today. We have the cleanest car on the block. Good thing he doesn't ask us to take the neighbors' cars, too.


Wow, Max has changed so much, he just runs right in there, it used to scare him. Uh-oh, he’s grabbing a little girls’ purple bicycle. Gotta distract him. Jungle gym. There. Better. Not sure whether I want to smile back at that other mom giving me sympathetic smile, really hate those sympathetic smiles. Can't she just say hello? Or encourage her little boy to talk with Max? DO NOT open up your yap and tell her he is not an alien. It's that repressed anger flaring up again. Down, boy. Down. She means well. That kid who is blatantly staring at Max has got to stop, why is his mother not saying anything? Wish the drool would stop or that he would be more aware of it and wipe it away, it totally make him stand out, maybe we should reconsider that medication. But don't want to give him any more medication, the anti-seizure meds are plenty for this little body. Oh, good swings are practically empty. THANKYOUVERYMUCH, Meddling Mother, for informing me that these swings are for babies. Down, boy, down.


I really need to videotape us going through this. Maybe he'll be satisfied if I put up a video of it on YouTube. Or maybe we should bite the bullet and buy a booklet of 10 car washes. I think this obsession's going to last awhile. Wonder what his next one will be. Would be nice if he got obsessed with reading. Or sweeping. HA HA HA 


Dying for a tuna melt. Hope nobody’s sitting at the corner table Max loves. Oh. There’s an elderly guy there reading a newspaper. Favorite waitress has spotted us, and is talking with elderly guy. He smiles at us, and moves to another table. So kind of him, but maybe we are sending the wrong message to Max. I don’t want him to grow up thinking people are always going to accommodate him. Right now, though, I really just want a peaceful family dinner. And a tuna melt. They are so nice to Max here. It's like that old Cheers song about going to a place where everybody knows your name. So comforting. 


This boy sure does love his bath. Especially the part where he churns up a tsunami that cascades over the side of the tub. Think we need more caulking there. What is up with all the kicking in the tub? Gotta ask neurologist about that. When is our visit to the neurologist? Two months? Three? I need a secretary. Maybe we should start doing aquatic therapy again. He looks so cute in his towel. Uh-oh, it's getting late. Last time he had a seizure, it was after several nights in a row when he'd been up late. It is not a good idea to tell him he cannot sleep in our bed because it is "broken." He is no fool. Just be firm about him sleeping in his bed. Love that sweet grin he gives me when he crawls into bed. Careful to adjust the pillows. Is it crazy to worry that he's going to suffocate? I don't know. I mean, he's 7, but he sometimes gets stuck in a position. Just can't worry about it. Too much else to worry about. 

Saturday, July 24, 2010

he "passes".....most of the time

My son, Mr. Literal (as I so lovingly call him...) has Asperger Syndrome.  He is "on the spectrum" as they say, and I've accepted that.  No really, I have.   And the more I learn about that spectrum, the longer and wider it appears to be, with an amazing amount of diversity included within.  The stereotypes of what an "autistic" person is like are no more correct in every case than trying to describe what a "funny" person is like, or a "creative" person, or an "eccentric" one.  Get my point?  And in the mind of much of the general population, autism = Rain Man.  So since Mr. L can't count a pile of toothpicks on the floor, he doesn't have autism.  Since he doesn't say "I'm an excellent driver" over and over, he must be ok, right? 

Truth is, Mr. L passes.....most of the time.  If we haven't told you (or if we haven't "come out" to you, as I like to say), you probably wouldn't know.  He is so capable, so normal in the eyes of most people, they would have no idea of his diagnosis and might argue with me if they were told.  We took him to the highly-recommended pediatric dentist in the area that is known for their work with special needs kids (i.e. dental patients who are VERY averse to anything remotely connected to dentistry), and when I called to make the appointment, I told them something vague like "he has a mild form of autism".  When we arrived and were taken back to the treatment area, I saw their computerized schedule for the day on the wall monitor.  Mr. L's name was highlighted in red......what does that mean?  OMG autism be careful don't move too fast don't freak him out don't cause a Chernobyl-style meltdown which will permanently scar the psyches of the other patients as well as the staff, that's what it means. 

To their credit, they did a wonderful job and he was amazingly cooperative and willing to be treated.  :)  He did so well, though, that a hygienist even asked me afterwards if I was "sure" about the autism, because he did so great and she just didn't see it at all.  She just saw an angelic, blond-haired boy who listened, cooperated, and was a model patient, so obviously he's not autistic, right?  He "passes" in most (to some extent, at least with peers), church, sports teams he's played on, and in public.  We tell when we need to, and sometimes not until after the fact (after the sports season ends etc), but otherwise we don't. 

As I have become more knowledgeable about the topic though, I have begun to develop "ASDdar" (not to be confused with radar, gaydar or the rest).  I might be wrong sometimes, and I don't ask when I'm not sure, but there are times when I see people in public and just have a feeling, an inkling, just by little signs or clues that I pick up on.   Most of the clues jump out at me because they remind me of Mr. L.  When I see a boy of older than 5 or 6 years old willingly walking in a public place while holding Mom's hand, I get that feeling.  When the teenaged bag boy at the grocery store asks me a LOT of questions about one topic, talks incessantly about one thing, or just has an unusual cadence to his voice, I get that feeling.  And I try not to worry about how those kids are treated, and what people think about them when they don't know the truth.......that kid is "weird", what's wrong with him, why does he talk that way, etc. 

I know that we are fortunate in terms of all that Mr. L can do.  He can communicate, he can sing beautifully, he can read and write, he can play the Wii like nobody's business, he can do so many amazing things and his diagnosis has not been a gigantic obstacle to him (at least not yet).  But it's there, and we do still have Chernobyl meltdowns sometimes, and when that happens it's very hard for the people around us to understand and cope with, because to them he's just a regular boy who happens to have an unusual voice, an obsession with sports statistics and a knack for remembering things that everyone else has forgotten. 

With the huge growth of ASD diagnoses in the last few years, more kids like Mr. L are among us than ever before, and the numbers will continue to increase.  And some will "pass" undetected, and some won't.  Regardless, each of those people is someone's child and is deserving of our respect and of an equal opportunity to reach his potential in this life.  After living as an "ASD parent" for around 7 years now, I find that sometimes the word autism opens doors......people are nicer, or at least more willing to give you and your child some leeway about what is expected.......and sometimes it closes doors.  Your child has the scarlet A, he can't be in this group or play this game or handle this or that.  Should that word even matter, though?  Mr. L is Mr. L, with all of his charms and quirks, regardless of if he has ASD after his name or not.  Some people have PhD, some have M.D. or J.D. , my son has ASD.   But if you don't know our little secret, please don't judge him, or us, when you see something that doesn't seem right to you for an almost-9-year-old boy.  He works hard every day, and so do we.  He doesn't understand why certain things are ok and others aren't, or why life isn't just as cleanly black and white as he wants it to be, but he's trying and he wants to fit in.  If you see him, give him a chance to do just that, ok?  Thanks. 


One of the diagnostic criterion for a diagnosis of Autism is a narrow, specific area of interest. Called 'special interests' or 'perseverations,' the topics can be highly focused and relatively unusual (types of lightbulbs, logos, amphibians, etc.), or fairly commonplace (dinosaurs, makes and models of cars). I've been lucky enough to have a kid that picks pretty easily accessible special interests. Over the last 5 years, my son has gone through dinosaurs, the Beatles, Pokemon (which I just found out was conceived by a man with Aspergers, of course), Star Wars and most recently, an interest --almost compulsion-- to draw and write a 'graphic novel' about a superhero of my son's own invention.

The superhero's name is Disaster Raptor. The books he's written about him, and his arch enemy, Spikes, have a very mature voice (which his wonderful teacher lovingly scribes for him), and a very complex plotline with A plots, B plots, character arcs and a fully realized self-referential world. It's by far the most astounding thing I've ever read, that these stories come out of my son, the kid who struggles so much with pencil and paper that it's a major feat to write his name on a good day.

The thing is, I never saw the drawing or even the story as Aspergian traits. I still like to tell myself that he's so not got ASD, he's just a hyperactive kid, he's got needs unusual for your average kid with ADHD, so we fit into the spectrum for therapy purposes but he's not diagnostically 'in' there.

Now, I have my own 'special interest.' Autism. Therapy. Interventions. Sensory Integration. Behavior. The evils of over-prescription of medication. Mental Health. I'm obsessed. 90% of the many books I've read in the last year have been autism related. At the moment, sitting out around in this room I write, I count five autism-related books I've started, finished or yet to start.

Last week I got to spend two full days engaging with my interest, attending a conference with the true rockstars of Autism. Temple Grandin, Carol Kranowitz, Tony Attwood, Jed Baker. Rock. Stars.

Tony Attwood is the one who wrote the 'go to' guide on Aspergers. He spoke for five hours last Friday, and while many things are sticking with me, there is one thing that completely blew my mind. He said that fantasy world creation, story writing, like my son's, is one of many types of special interests that kids and adults with ASD can have.

So this thing that I thought took him off the spectrum, seems to be planting him back on it. Not that that really matters, but I think you might know what I mean.

Tony Attwood also said to look into the world of the fantasy to learn about the child. How, in all my thinking about The Kid, did I never think to do this? I think I need to read his story again...

Friday, July 23, 2010

Myths About Deafness

I often encounter people who speak to Ashley and then get frustrated because she seems to ignore them. I refuse to put a sign on her saying, "I am deaf", so I have decided to share some myths about deafness. You will notice that I left out the obvious myth - "People who are deaf can actually hear sometimes!"

MYTH: People who are deaf cannot use the telephone
Some hard-of-hearing people have enough residual hearing to talk on the phone. People who are deaf often use a device called a TTY and a state relay system for phone line communication.

MYTH: People who are deaf are also mute.
It is incorrect to assume this. Some may choose not to use their voices if they think they will be difficult to understand or have inappropriate pitch or volume. In any case, terms like “deaf and dumb” or “deaf mute” are considered offensive today.

MYTH: Unusual sounding speech means a person has mental retardation.
Speech development depends greatly on one’s ability to hear himself or herself talk. For the person who is deaf, the foundation for learning speech is not there. It has nothing to do with intelligence.

MYTH: People who are deaf can read lips
Lip-reading is a skill that some deaf or hard-of-hearing people have. Others do not. Even with the best lip-readers, it is important to remember that only about 25% of speech is visible on the lips. Some words look almost exactly the same – for instance, the words “battle” and “paddle”.

MYTH: Hearing aids completely correct hearing loss
Hearing aids are assistive devices which improve hearing for some individuals. Hearing aids do not “correct” hearing. A hearing aid may enable a person to hear someone’s voice, even though she or he may not be able to understand distinct words. Just because someone wears a hearing aide does not mean the person hears normally.

MYTH: People who are deaf are not very bright or educated because they have not learned to talk or do not use proper English grammar.The primary language, or first language, of the Deaf Community is American Sign Language. English is a second language. Most deaf and hard-of-hearing people learn English usage and have speech training, but naturally enough they may find it easier to use their primary language most of the time.

MYTH: People who are deaf lead totally different lives from other people.
Deaf people are set apart by only one thing. As a former president of Gallaudet University once said, “Deaf people can do anything but hear.”

Thursday, July 22, 2010


In just a few days, G. will officially be 6 and 3/4s.  He is aging out of his day school and preparing to attend Beard School, Chicago Public School’s only therapeutic elementary.  Out of the thousands of children G’s age, only dozens are lucky enough to attend – in an environment that includes all manner of therapists and therapeutic learning tools other CPS schools seriously lack.

Additionally, G. is aging out of his therapeutic playgroup.

For the past several weeks, he has been prepared by his teachers and group leaders to transition.  But I can tell G. is no happy puppy about this.  He is prone to outbursts of unexplained crying, whereas he is usually fairly placid.  He continues to struggle to find the right words to speak with and this increases his frustration level. 

At one point, he decided to hold his bowels in to “voice” his dismay: I can tell you last weekend was exciting to watch the speed at which a combination of Miralax and suppositories work and how much solid waste one young man can hold in his lower intestine. (Sometimes I frighten myself at the pleasure I derive from the small victories I have in life these days…).

It’s now been 8 months since J., G’s father and my husband, passed away.  I look on at how far G. has come – he continues to learn and unlike many autistic children, he has not withdrawn inside himself.   Since he receives psychotherapy at day school, he’s actually much more capable of expressing his emotions. 

We have a babysitter who has formed a phenomenal bond with G. and works with all of our therapists to have continuity of care during the hours they’re  playing together.  I’m crest-fallen that she’ll have to go to an Air Force Reservist training camp for 7 weeks, just as G. leaves school and playgroup.  More transition…

We both look on with some trepidation at the future in front of us.  I understand that as many times as I can drive G. past “big boy school” and talk about him riding the yellow school bus, the darkness of the unknown is barely punctured.  There are just more people, like his father, to say good-bye or “see you later” to.

I have few expectations for the next month that don’t include anxiety, as G. goes off into the summer without school, playgroup or his cherished babysitter.  We’ve made plans for a 2-week break in NY to visit relatives – vacations are usually a time when G. thrives.

Off we ride into a new sunrise, hopeful as usual. I’m so very proud of G. for his advances.  I revel in his laughter, I secretly cry when he speaks of friends at school. 

I look on in thoughtful wonderment as he uses his hand to guide a toy, yellow Dodge car around the living room that contains a plastic, injection-molded figure that looks remotely like my deceased husband.  G. says, “Going in Daddy’s car.  Bye, bye, Daddy.”  So far, as G. has transitioned, he has taken the things he loves with him: long may they keep him feeling safe and loved on his unique journey into the unknown.

Wednesday, July 21, 2010


Going on a family vacation is a little like being pregnant and then giving birth. I'm never doing this again, you think in your first couple of months as you either throw up every single morning or lie in a stupor on the floor of the coat closet like I did when I worked as the pastry chef of a restaurant during my first pregnancy. I'm never doing this again, I thought during the ninth month and second week of that pregnancy as I hauled myself up eight flights of stairs in my New York City apartment.  I'm never doing this again, I swore as I picked the net panties off and lowered myself down onto the toilet one day after my second c-section. I'm never doing this again, I said as I wrapped my arms around one doctor, my naked belly practically under his chin, while a second doctor attempted to put the epidural in my back. You know the rest.

I'm never doing this again, I say, as I pack the diapers, the medicine, the change of clothes, the stimulating toys, the special food, the monster stroller/wheelchair. I'm never doing this again, I say as I stand behind her on the narrow aisle, coaxing her out-turned feet down the aisle while holding my own handbag and her carry-on behind me. I'm never doing this again, I repeat as I straddle the closed toilet in the airplane bathroom with her standing between my legs and slide the messy diaper down her legs and over her feet. I'm never doing this again I say as she flings and tosses herself around the bed, all night long for the entire "vacation," never getting entirely used to the time change.  I'm never doing this again.

I'm doing that again. 

Every summer, we join my parents, my two sisters, their husbands, six children, my cousin and his wife and their three children for a week on the east coast at my parents' beach house. My children look forward to this week literally all year and are almost beside themselves with joy when it comes around. Because we live so far away, and because Sophie has a very difficult time traveling and adjusting to change, we literally only go once a year as a family. It's a wild and crazy week with lots of the usual dysfunctional family dynamics and a more than fair amount of laughter and good times. The memories for our children, I know, will be profound and lasting in the best way.

It is NOT relaxing, and I like to call it the "vacation" with a special ironic emphasis on the quotations.

But just as I finally got up the nerve to have another child, three years after Sophie was diagnosed with infantile spasms at three months of age, and then had a third baby less than three years after the second baby, when spring rolls around each year, I start planning the "vacation" with enthusiasm. I'd even go so far as to say that I imagine maybe Sophie will be really great this year, no seizures, sleep well, a dream on the plane... So great is my amnesia that I relish getting a good deal on flights and begin to think about perhaps spending more than one week there.

This year we're spending THREE weeks on "vacation."

As you read this, I'm probably doing some sort of gymnastic routine in the bathroom. Be hopeful for me. Next year, I plan on inviting some guests to join me.


Elizabeth admits to hating travel with her special needs daughter. She blogs regularly at a moon, worn as if it had been a shell.

Tuesday, July 20, 2010

The Different Card

As is common in many autism homes, we had PECS cards all over the place.
We started using them when my son was three years old and sort of phased
them out of use by the time he was ten or so. And they were a godsend. We
could tell him when we were going somewhere, he could tell us what he
wanted, or we could tell him what needed to be done instead. We could use
them to make visual schedules so that he could anticipate what would happen
when, to ease his anxiety. And one card that we used quite often was the
Different Card. If the day’s plan deviated from the norm or what he was
used to, we would show him the Different Card with the two arrows pointing
in opposite directions (one up, one down), and he could process the change.
Even in his non-verbal days, we’d show him the Different Card and sometimes
he would just nod slightly in acknowledgment and then keep moving,
seemingly unfazed. He knew something would be different, and he mentally
prepared himself the best he could.


We’re three weeks into July. I thought by now I’d be writing about how
crazy-busy I am with packing my home, downsizing a four-bedroom house into
a two-bedroom apartment. I thought by now my house would be sold. I thought
by now I’d know where my children, especially my teenage son with autism,
would be going to school in September. I thought by now at least some of
the unknowns would have revealed themselves.

But really, I had only hoped. After all, how realistic were any of my
thoughts? And hope, though fervent, is still wishing. Sometimes I feel
foolish, sometimes resigned, often dejected. When things aren’t going the
way you’d hoped, how else should you feel?

It’s hard to keep at it, to remain hopeful. But I’m a long-time
special-needs parent. My son has taught me to believe, and I am a champion
of hope. It’s what I do, what I’ve done all along. My major moving plans
are not going the way I’d hoped, but regardless, I know that life will work
out the way it should. It always does, whether I worried or not. Whether I
planned or not.

And that’s when the other thing that we do best comes into play – when
things don’t turn out as we hoped they would, we adapt. We go with Plan B
(or come up with one on the fly) and keep moving, because that’s what we’ve
always had to do. That’s our life. And whether it feels that way or not, I
think that’s actually pretty hopeful.

As for my situation, what will be, will be. It will be different than how
I’d thought, but that’s okay. I know different; I can handle different. My
son has trouble handling different, but we’ll get through it. I’m not sure
if the Different Card will work as well this time (or if I even still have
it), but he’s come a long way since his non-verbal days, and maybe he’ll
just nod his head and keep moving, like he did all those years ago.

I’m hoping.

                       Tanya writes TeenAutism.

Monday, July 19, 2010

Alone Time

There was a time, now dimly remembered, when I got to go to the bathroom by myself.

I got to shower by myself too, and when I wanted a moment of alone time, I got to spend it actually alone.  Amazing how I took that incredible luxury for granted-- all those times I took long, blissful baths without being serenaded by a woman's voice chirping "The cow says. . . Moo!" eight thousand times from three feet away.

It's been two years since Connor began having these seizures that require mouth-to-mouth resuscitation.  Because we have virtually no warning when they will occur and he cannot tell us when he feels one coming on, the advent of these seizures was the end of my alone time.  I'm not sure Connor even understands what being alone is-- the only time he doesn't have someone physically in the room with him is when he is in bed, and even then he doesn't have any real privacy, thanks to his apnea monitor, which transmits every tiny motion and sound he makes directly to me via the receiver set up near my laptop or bed.

So for the past two years, except for our precious respite care hours or weekends when Jeremy is home, when I go to the bathroom Connor is in there too, his wheelchair facing the wall but angled so I can see if he slumps over.  When I shower, it's with the curtain pulled half-back so I can watch him play with his toys in the bathroom.  When I do laundry, I balance the basket on the handles of his wheelchair as I pull clothes out of the dryer.  When I do my makeup, Connor watches me in the mirror.  If I have to run out to the car for something or I need to check the mail, it's with Connor in tow.  At night, once he goes down to sleep, I have the freedom of the house, but the garage and yard are off-limits because I can't hear the alarm if it sounds.  When I signed up for this parenting gig, it was with the understanding that I wouldn't have very much "me" time anymore, but this wasn't quite what I'd imagined that would be like.

I'm pretty used to it for the most part, but in recent weeks Connor's episodes have become more frequent and the symptoms have worsened.  Because of this we're now in the process of switching to a new medication and have been told to expect breakthrough seizures, which has me jumpy.  Connor is taking full advantage of this; he's discovered that if he slumps over in his wheelchair and doesn't move, he gets attention really really quickly.  Needless to say, "Scare The Mommy" has become a new, extremely fun game for him.  I am not quite so thrilled about it.  This wonderful development has coincided with our respite care worker leaving for some training out-of-state, which means fewer breaks for me.  Not a good combination.

I'm hoping that the new medication will work and we can go back to that blissful time period when I could leave Connor playing in the living room and go to the bathroom by myself.  Because I must admit I've started saving all of my errands for the weekends when Jeremy is home and can watch the little guy.  "I'll just pop off to the grocery store," I've started saying, "I'll be right back."  Then I drive the three blocks it takes to get there at five miles an hour, and go up and down every aisle at least twice.  I think my husband is getting suspicious; it didn't used to take me three hours to get a gallon of milk and two carrots, but I can't really help myself.  Being alone is just so blissful and it happens so little these days.

If the grocery store had a bathtub, I might never leave.



Jess writes daily about her family over at her blog, Connor's Song.

Sunday, July 18, 2010


My son, Rojo, turned fourteen on the 14th of this month – his golden birthday. Went shopping for paper products for his party: plates, napkins, that sort of thing. Found the Elmo-themed stuff and grabbed it. The boy does love Elmo, actually has a stuffed Elmo that he calls his son. Upon closer look saw that it said, “For baby’s first birthday.” Put them back. Couldn’t do it. Love the boy, would do anything for him except get him something that says that. Not that he’d care. At all. But I care. He is not a baby.

He is fourteen, and while he may not want, nor need, any of the things that a typical fourteen-year-old wants and/or needs, he is not a baby.

Went to a different store and found an Elmo balloon. Had the young man at the counter help me, blow it up, attach a matching red ribbon and weight, and looped it through my cart to finish my shopping. Saw three babies in the store point and make sounds as they saw Elmo flying high in the air of Safeway.

“Where’d you get the Elmo balloon?” one heavily tattooed young man pushing a stroller asked me. “It’s my son’s first birthday today. He loves Elmo.”

“Over in floral,” I answered. “It’s perfect for a baby’s first birthday.”

“Exactly,” said the man.

Then I went home and cried.

And got ready for the party.

And wished my baby a very happy birthday.

And it was.



Saturday, July 17, 2010

her ways

My older daughter, Katie and I were in the car yet again. We were headed home, exhausted and full.

We've been chasing down adventure after adventure while Katie's little sister, Brooke is at ESY camp. Yesterday took us to Newport, Rhode Island, where we toured the Breakers and imagined life as Vanderbilts in the Gilded Age.

As we walked out of the grand estate, Katie said, "Mama, now that I've seen a mansion, I think I'd like to live in one." She stopped for a moment, then added, "They do come with the staff, right?"

After touring the house and wandering the cliffs, we'd made our way into the harbor town. We had lunch at the pier, stopped to taste the homemade fudge at the fudge shop and roamed through EVERY SINGLE boutique along Thames Street.

In the very last shop of the day, Katie found an adorable, hand-knitted mermaid that she declared on the spot to be the cutest thing she'd ever seen in all of her nine (and nearly a half, Mama!) years. She informed me that we absolutely, positively could not even think about leaving without buying the mermaid for Brooke. Brooke, she said with full dramatic flair, could not live another day without her.

As we walked through the shop, she gave me the eyes. Oh, c'mon, you know the eyes. The golden retriever, please, please, please throw this ball just one more time eyes. Yeah, those. She recruited the shop girls for the effort, who were only too happy to oblige. She bargained. She swore to make my bed and wash my car. She offered to use her own money, which would cover a quarter of the cost of the doll. She had everyone in the store rooting for her. One of them asked if she'd like a job. 

Finally she let out a deep breath and said, "Mama, can you PLEASE just admit that you're going to eventually give in and agree to get her and then we can just skip all of this?" The entire staff disolved into fits of laughter. Someone said, "She's got your number, huh?" Um, yeah.

So there we were, driving home with the mermaid in tow. Oh, what? Like you would have left it behind?

"Mama," Katie asked, "Do you think she'll love it?" She didn't wait for my answer. "I really think she'll love it. I mean, you know, like the way SHE loves things. I mean, she might just take it and not say anything and then I'll say, 'Do you like it, Brooke?' and she'll say, 'I do,' and then just put it down and not look at it again. But then in like three days she'll start to pick it up again once she's gotten used to it. And then she'll want to sleep with it and then we'll know that she really DOES love it, right?"

I laughed. "You really know your sister, don't you, baby?"

Katie was quiet for a moment as we drove.

"Mama," she began. "Brooke really does love me, doesn't she?"

I took in a deep breath. "Yes, baby. Brooke loves you a lot."

"Even though she shows it in some odd ways, it's HER ways, you know, Mama?"

"Yes, baby," I answered, "I know."

I pushed back the tears and drove. We had a mermaid to deliver. 


Jess can be found at diary of a mom where she writes about life with her daughters - Katie, a neuro-typical nine year-old and Brooke, a seven year-old who has autism - and her husband Luau. 



Friday, July 16, 2010

Captured, Coveted, Captured Once More

During the school year, my girl is included.  For the last 2 years Addie has learned with everybody else in her junior kindergarten and senior kindergarten classrooms.  Fully included means to me that she has the support, accommodations and modifications she needs to access the same curriculum at the same time and in the same place as the rest of her grade AND (!)  that the teacher(s) set a tone of social expectation for her that is on par with the rest of the kids.  This has been largely the case for her with a few missteps that were quickly corrected.  Hand in hand with this has been a relatively steady social life for her – play dates, friends, parties, scouts, shouts of hello from moving cars and bikes...

But the bottom drops out in the summer.  All the other kids nurture their connections through adventure and playground camps, through sports workshops and group Red Cross swimming instruction.  But not for Addie, as she only has access to separate and special programming in the summer.  She disappears from her friends’ radars as they are busy with their activities and each other while she does a little bit of music therapy and adaptive swim.   I have gone the route of signing her up for a few regular recreational offerings and then paying double the fee or more to find and send 1:1 support for her, but she was never included in these activities – simply allowed to remain present.  There was no one of authority who expected her, nor the other kids to work with Addie’s communicative and cognitive differences to forge teamwork, partnerships or even simple civil exchanges between kids.  Because of the example set by the administrators/instructors/coaches/leaders of these programs, she was ignored by all people other than her 1:1.  Needless to say, that was not what we had in mind.

I have an older daughter which is mostly a blessing, but sometimes it wreaks havoc with my expectations.  If Cate got to do something at a certain age, I expect Addie to have the option to do it, too.  Cate has had action-packed summers all her life in our community – camps, classes, open swim at the high school pool.  She’s made friends that have lasted for years, she has memories from back when she was 5 that she still giggles about with her friends 6 years later.  It has entrenched her here, solidified her citizenship - she owns a piece of this community.  Addie needs a piece, too.  She deserves a nice chunk like everyone else.

I wasn’t going to let another summer slip by for my almost 7 year old. Myself and 2 other parents who make it a priority to orchestrate environments wherein their child with differences has opportunity to contribute to socially; to learn from and teach other kids about what it means to be human, to be a member of a community - we decided to roll our sleeves up and create, find funding and staff for, and run an inclusive playground camp.  The playground camp itself has existed for years; our kids just haven’t been welcome.  Until these 4 weeks in 2010, when we hired staff and volunteers to help all kids learn how to extend creative inclusive thinking and execution beyond the classroom, out onto the field, playground and craft table.

This week Addie has played field games with old classmates and new friends.  She has shimmied on the playground with some kids in her music therapy class, as well as some kids from her Girl Scout troop.  Addie’s been pushed on the swing by high schoolers, middle schoolers and grade schoolers.  She’s pushed a few in return.  An old friend of hers from her Early Childhood Special Ed program came over for lunch.  She went to another friends’ house to play on the slip and slide – a friendship born of the other girl’s interest in seeing Addie using sign language.  A classmate from last year asked if I could bring Addie to see one of his pee wee games this summer and inquired what sports Addie plays that he could come and cheer for.

And tomorrow, I will get a tangible reminder of these weeks – something I can look back at for years to come.  I will get what I looked forward to for my older daughter, something I saw as a flag signaling connection, young life with its own momentum - not dependent upon my presence, heralding friendships and fun and being a part of something.  I will see other kids waving this same flag around town and at school.  I will know that they too, were a part of Addie’s experience this summer, that they have it in common, a memory shared.

For tomorrow is tie dye shirt day at camp.   Addie will make her own alongside her fellow campers.  I already know I will find ways to work it into any outfit summer or winter, wash and fold it carefully for as long as it is wearable.  When it is worn beyond use, I will arrange the remaining shreds in Addie’s treasure box as I did for her sister Cate.  We will take it out every so often and talk about fun, friendships and new interests that all started that summer back in 2010.

Thursday, July 15, 2010

Why I Write

My personal blog tends to be a pretty friendly place. I rarely get mean comments there even on the rare occasion I write something controversial. (And, yes, it's really rare that I post about anything controversial on that site, unless that is what you consider pet mice to be.) I also write a column in the Washington Times Communities, which has many supportive commenters, but is far more likely to get dissenters—and nasty dissenters at that.

A post I wrote in early June recently got a spate of comments that I found very distressing. The post was about a Los Angeles school superintendent who said, "When you fund some of the special ed things, you're taking from regular kids."

That post sat for several weeks with only a few comments, but recently a couple of readers showed up with words that set my blood boiling. The quote above is shocking enough, but almost worse were some of the comments suggesting that the extra costs associated with special education are an unfair burden to those who aren't parents of special needs kids themselves and other, even more outrageous comments.

I am usually pretty thick-skinned, but the comments on this post upset me a lot. It is easy to forget that those people exist—or easy to try to pretend they don't exist. These comments were a harsh reminder that there are many people out there who see our kids as less. Who don't think they are worth money or effort. Who think they don't have a future. Who assume that if they can't go to college or read or talk that they are a drain on society.

Those are ugly thoughts, but they're out there. Those comments made me angry, then they made me sad. Then they made me determined.

There are many reasons why I blog. I write for several sites and, honestly, there is a different reason why I write on each one. The reason I write in the Washington Times Communities is to try to help create a world where my special needs son can grow up as a proud, successful, happy, autistic person. I want to put words and thoughts into the world that will make that possibility probable.

My entire goal with that column is to reach as many people as I can and to let them know that our children, and the adults they grow into, are important and worthwhile. I want people to understand that just because a person has autism or another so-called special need, that they are still deserving of respect and care.

I have hope. I know that there is a lot more understanding and acceptance in the world today than ten, twenty, fifty years ago. I see the kids in my son's class and hope that their innocence and willingness to embrace difference bodes well for the future. All I know is that I am going to keep on writing and talking and advocating until I'm satisfied.

All those horrifying comments can do is let me know that our job isn't yet done.

Among the places Jean writes are her personal blog, Stimeyland; her Washington Times Communities column, Autism Unexpected; and her autism events and information site for Montgomery County, Maryland, AutMont. You can also find her on Twitter as @Stimey.

Monday, July 12, 2010

Organic Choices That Are Worth The Money

I know how important your families heath is to you and I know how much time it takes to stay on top of new information and good practices. The foods that we consume can make such a difference in how we feel.  

Organic fruits and vegetables can be expensive and I pick and choose the ones I buy. The big factor that influences my decision about buying organic produce is the level of pesticides used in their production.

Organic produce contains fewer pesticides. Pesticides are a problem because:

*Pesticides can accumulate in your system. Most of us have been exposed to pesticides for so long that our bodies have stored up chemicals that can strain a weak immune system and lead to health problems such as headaches and birth defects.

*Exposure to pesticides at an early age can cause developmental delays, behavioral disorders, and motor dysfunction. Not surprisingly, children and fetuses are most vulnerable to pesticide exposure because their bodies (particularly their immune systems) and brains are still developing.

*Pesticides put strain on already taxed organs so pregnant women are more vulnerable. Pesticides can be passed from mother to child in the womb, as well as through breast milk.

The following foods are considered to be the "dirty dozen" according to the Environmental Working Group, a nonprofit organization that analyzes the results of government pesticide testing in the U.S. so, try to buy organic.

*sweet bell peppers
*imported grapes
 (rated THE WORST)
*spinach and potatoes did not do well either

The following non-organic fruits and vegetables have low pesticide levels because most have thicker skin or peel which protects them better from pests, and means that farmers do not need to use many pesticides.

*Avocado (both onion and avocado were rated lowest in pesticides)
*Peas (sweet)

When you are shopping, remember 2 facts.

1. "Natural" does not equal organic. "Natural" is an unregulated term that is applied carelessly to market products. Only the "USDA Organic" label indicates that a food is certified organic.

2. Organic doesn’t equal healthy. Junk food can just as easily be made using organic ingredients. These products are usually still very high in sugar, salt, fat or calories.

Moving out of the red zone of compassion fatigue: getting feeling back in my toes

Last week I was at the drugstore with my ten year old son. I was paying for my things when an elderly man approached the counter. He appeared to be in his late eighties and had deep red bags under his eyes. He looked, in a word, absolutely terrible. With a shaking hand, he took a photo out of his pocket and showed it to us and to the women behind the cash. "This is my wife," he said. "She died two days ago, we were married for 58 years. She was the love of my life. Now I can't sleep and the doctor wants me to take these pills." We all fell silent for a minute and then I had a little chat with him. He told me his children all lived out of town, and that he was completely alone. When I left the store with my son in tow, I felt regret that I did not do more. My head was already buzzing with all the community resources I know about, how to link him with the right ones, how we should have taken him out for tea, etc. I was dying to case manage this man into getting support right on the spot but I also had to go home and cook dinner and take care of my family.

This is the constant challenge we face as helpers and caregivers. Pain and suffering is all around us. Where do you draw the line? Do you take every elderly widower out for tea? Do you help every harried-looking mom you meet in the doctor’s waiting room? Do you rescue every kitty you see? So what we do is we try our best to figure out boundaries. Sometimes we over-correct and we become like Fort Knox, not letting a single person inside our walls. Sometimes we go too far in the other direction and become ambulance-chasers, rescuing every stray dog and baking for every little old lady on our street.

In my workshops, I am always saying that we need to gain a better understanding of our own warning signs along the continuum of compassion fatigue. Using traffic lights as an analogy, the green zone is where you are when you are at your very best (I sometimes joke that you are only in the green zone when you've been a helper or caregiver for about two weeks or when you have just returned from a 5 month yoga retreat in Tahiti). The yellow zone is where most of us live most of the time. We have warning signs emerging but we often ignore them. The red zone is the danger zone. The extreme end of the red zone finds us on stress leave, clinically depressed or totally withdrawn from others and wracked with anxiety. As caregivers and helpers, we will all visit the less extreme end of the red zone several times in the course of our lives- it is a normal consequence of doing a good job.

But, back to my story: the reason I am telling you this little anecdote is that I would not have always had this warm compassionate reaction to the elderly man. In fact, my reaction is actually a sign for me that I am well out of the red zone of compassion fatigue (for the time being!). You see, there have been times where I have felt so depleted by all my caregiving demands that I would have hardened myself to this old man's story and not talked to him at all. Not nice, eh? Have you ever noticed that in yourself or am I the only hard crusty person out there? Conversely, for some of you, being in the red zone would mean you would have jumped into rescuing this man and neglected your own needs or your family for the evening.

Research shows that compassion fatigue hits hardest among those of us who are the most caring. As helpers, we have a homing device for need and pain in others and we have this from childhood onwards (for many reasons: family of origin issues, birth order, heredity, etc.) So, often, for helping professionals and caregivers the main challenge is setting limits and not being a helper/rescuer to everyone around.

Unchecked, compassion fatigue makes us detach from others: often our colleagues, family and friends experience our anger and irritability far before the people we are caring for. Although I am not proud of it, I know that I always seem to save the best for work and give the remaining crumbs to my loved ones. In my clinical work, I feel present, warm and loving towards my clients, even the most challenging soldier who has never wanted to come to counselling and hates being there. But when I am in the red zone I avoid my neighbours, ducking into my house as quickly as possible to avoid a chat, feeling slightly guilty and irritated at the same time. I avoid the phone: "why is my lovely dad calling me to say hi? grrr"

Each of us will have different warning signs. The key to developing an early intervention plan is getting better acquainted with your own. (If you want more resources on this, consider reading my Compassion Fatigue Workbook).

The fact that I feel ready to give again is a great sign of "green zonedom." Now the trick is keeping it in check and not overcorrecting and becoming depleted again. Keeping the balance, my friends, is a lifetime's work. I'm ok with that.

Sunday, July 11, 2010

The Other Side of the Spectrum

About 6 weeks ago, just as summer was getting started, I was diagnosed with breast cancer.  I started radiation treatments three days ago.  When I got the unexpected news, my first reaction was “You have got to be kidding me!”  I entered a free fall towards a plethora of stunned, confused and angry feelings; I truly felt as if I had absolutely no room in my life for yet another medical crisis. Taking care of Sylvie was enough.  

However,  my immediate health situation isn’t a crisis. It may have been 5 years ago prior to having my lovely twins and living with the daily reality of a chronically ill child.  But the type of breast cancer I have is non-invasive and is considered stage 0 on the spectrum.  I feel odd even talking about it, because ultimately with a little surgery and 28 days of radiation, I will essentially be out of the woods with this scare.  But overnight I became part of a national statistic: about 1 out of 8 U.S. women are diagnosed with breast cancer at some time in their lives.  I’ve joined humanity! I’m not dealing with an orphan disease that affects only 1 in 100,000 individuals.  I’m not making light of breast cancer, but this is not a death sentence I am dealing with.  Most breast cancer cases, if diagnosed early, are treatable--unlike my Sylvie’s illness, which has no treatment.

Additionally, I was stunned by the vast amount of information made available to me at my local hospital regarding cancer. In the course of 4 hours, I saw three cancer M.D. specialists, a psychologist, two nurses, and a representative from the American Cancer Society.  I was given a packet of resources the size of a phone book, and I have gotten follow up phone calls asking how I am doing.  This is in stark contrast to the one sole neurologist who had the lousy job of telling us Sylvie’s diagnosis three years ago.  He’s a great doctor and really helped us along the way as we tried to pinpoint why Sylvie’s motor skills were degenerating.   He hugged me and my partner after he told us that Sylvie had a rare and degenerative disease, but we basically were left to our own devices to make sense of Sylvie’s future and her medical situation. 

Dear Hopeful Parents readers, here is a true confession.  Sylvie’s dad and I have been somewhat glib when we go to functions for families with special needs, because sometimes we feel as if we’ve got it worse than anyone else—“Ha, your kid is missing a limb, well my child is going to die!”  “Ha, your child has tantrums—our child can’t even talk or walk, let alone scream and kick!”  I sometimes even think this when I read other entries on this website.  Ultimately this mental competition about whose child has it worse doesn’t make extreme parenting any more or less easy.  But when you are on the end of the spectrum where death is presented as the inevitable—such as those of us dealing with these rare and weird orphan diseases—it can help us cope temporarily.

But here I am, spending my summer getting my left breast radiated, and it’s not so bad.  I can’t say I’m filled with dread or fear or nausea, because my cancer isn’t aggressive and it’s a somewhat known entity in the medical arena.  I have the summer off, I live close to a high quality medical facility, I have insurance, and I’m spending more time focusing on exercise and diet.  For once in my life, I’m extremely grateful to be on the other end of the spectrum where things don’t look so grim. I’m up for this challenge and am convinced I will be a survivor!

When Kirsten isn’t taking her summers off to go to radiation therapy five days a week, she works as a professor of Communication Studies at the State University of New York and is the mother of 4-year old twin girls.

Friday, July 9, 2010

Joy in Volunteering

Because our child who had special needs has passed away, our special need is now living with grief, and the change in our family structure. No one can fill the Katie-shaped hole in our family. I find that one of the most effective coping strategies, for me, has been working to help others who are dealing with pediatric cancer. Some of our friends in the world of pediatric cancer are still living with the disease, or with the concern of relapse. Because of our experiences with Katie on her cancer journey, I am constantly drawn back into that world, through writing, sewing blankets for the hospital, speaking and volunteering.

I meet people in this world of pediatric cancer who teach me, who lift my spirits and encourage me, whose lives fill me with respect and awe at their perseverance, love and courage.

Last week, I had the privilege of volunteering at Camp Goodtimes West, the American Cancer Society’s camp for kids who have cancer (or who are in remission) and their siblings, here in Western Washington State. You may have read what I’ve written on my blog about camp, and about the magic of love that happens there twice a year, for a week in June and a week in July. David and Katie went to Camp Goodtimes West in June of 2007, just before her relapse. She didn’t want to go, but Gregg and I knew it would be a blessing for her and David – and by grace, it was, even beyond what we had dreamed.

Katie relapsed just three weeks after camp ended, and after she had some time to process the fact that she was dying, she asked us to scatter her ashes at camp. We did this last week; it took us three years to be ready to do it. It was beautiful, and I feel peaceful about it, because it was her wish – we were able to grant this wish, and it was held in love by our friends on the camp’s staff. You can read about it here and here.



Yesterday, I went to Seattle to participate in a meeting of the group Seattle Kids CAN (Cancer Advocacy Network). This group of guilds (which support cancer research at Seattle Children’s Hospital) is working together to plan for September, which is Childhood Cancer Month (“Gold = the new Pink”). Our goal is to share our resources and raise awareness and funding for pediatric cancer research. It was very thought-provoking to be in a room with committed, generous-hearted individuals whose lives have all been affected, directly or indirectly, by pediatric cancer. We reviewed a brilliant advertising campaign that is in the works, made by a kind and compassionate creative team.

On Monday evening, Gregg, my mom and I are going to a reception to meet a leading cancer researcher who has come to work at Seattle Children’s Hospital. He will also be advising a foundation that was started by a friend I met through the cancer journey. Carin & her husband Jeff started The Ben Towne Foundation in memory of their son, who died from cancer. I am looking forward to meeting Dr. Jensen and hearing what he has to say.

It’s very exciting to have all of these events occurring in rapid succession – I can see and feel the building momentum of love, passion and generosity of heart, and that makes me happy. It reminds me that there are many people of great goodwill, working on behalf of others -- sometimes because of their own pain, and sometimes, simply because they have deep compassion and want to make a better world.

I hope you are having a great summer!

Karen Gerstenberger writes at

Casting Closed

We were inundated by responses from our casting call! Thank you, one and all, for your enthusiasm.

Due to this unexpectedly overwhelming response, casting has now closed.

Those who submitted their information will be contacted by July 16, 2010 if you've made it to the next round of the casting process.

Please keep checking back at Hopeful Parents for updates about the show!

Thursday, July 8, 2010

Want to be on TV?

Hopeful Parents is helping to launch a new, unscripted series featuring families raising children with special needs. A major, national cable network has expressed interest in this show.

Families are invited to apply for a once in a lifetime opportunity to be part of a documentary-style, reality-based show to create awareness for the extreme parenting many of us perform on a daily basis.

We will consider families who can show a core stability, who would be capable of having camera crews of three to four people in their home for two to three days at a stretch, who are articulate and well-studied on their child's disorders, and who exhibit forceful personalities in finding solutions.

We are currently accepting applications and scheduling interviews -- THROUGH JULY 16 ONLY. Please complete the form to be considered for casting.

BLOGGERS & E-MAILERS: Please help us get the word out! Please link to this post from your blogs, or copy this text and e-mail it to your network. We would like to find the most compelling stories possible, and we know you can help!

Tuesday, July 6, 2010


I had one of those rare nights out with the girls, two who also have children on the autism spectrum.  As we waited for our table, I had a more private conversation with one of them.  

M is a newer friend.  Our paths crossed before I even moved here, and perhaps that was the first sign that we should be friends.  She has not walked down this autism road quite as long as I have, but through our various encounters I knew that I needed to reach out because I think we are quite similar; outgoing, normally upbeat and strong-willed personalities.  Driven (perhaps sometimes to a fault), lapsed Catholic (bring on the guilt), and lead by our deep emotions that can sometimes empower us and often times overwhelm us.  

I have felt at ease opening up to M.  I am a very open and honest person, so this isn't normally an issue, but there are those things that a person sometimes needs to verbalize not only to the universe but to another being, and I guess that lovely glass of pinot noir, though only a few sips in, was the impetus to speak my heart.  I told her--as I dropped the volume of my voice just slightly--that sometimes I feel like autism is my living hell; like I have done something really awful in a past life and this is my hell on earth to repay it.  

No doubt, that is a strong sentiment, and one I realize has many tangential arguments that I acknowledge most directly.  But at that moment, on that day, I needed to tell someone that dark feeling inside my heart.  It felt good to let it out, and it felt good to hear from M that she, too, has had that feeling at times.  I don't think it's a coincidence that the two of us were raised in Catholic homes where you were encouraged to confess your sins to a priest.  Though we don't practice that religion any longer the need to purge our less-than-perfect thoughts is likely so ingrained in us that it will always be there.

But I recognize that you who are reading this probably also feel that need to purge those thoughts, and perhaps this is why this blogosphere is so crazy important to us.  

So thank you, members of Hopeful Parents, my personal friends, and family readers.  (Well, the two family members who actually know about this blog!)  You are my confessional and without you I know this journey would be a hell of a lot more difficult than it already is.

Mama Deb does a little too much reconciliation at This Is My New Normal.

Monday, July 5, 2010

Fish soup, July, before the crape myrtles have dropped their blooms

I prepare onions for fish soup on a weekend morning.


The living room is strewn with moving boxes

and just-bought old desk drawers, waiting loose,

and walkers. My new walker, the boy's old walker, 

and his wheelchair, there because he took only his new walker to his father's.


Fish soup is good when you have been through too much and it's raining.


Just before I cut the fish with scissors and release the bits into the pot

I'm swept over by all I have learned of love. I must sit down.


There are no guarantees.

And yet the boy walks. There are no guarantees and standing here, impermanent,

yet I still feel it: a gift

suspended through the humid air, throat-burning, free and solid and true,


the history of all love received, or retaught where it earlier missed.


There will be more too much, and I have no mastery yet. I breathe in one more time and go

to heat the water.


Unable to exempt, love only solves.

Saturday, July 3, 2010

Breathe In, Breath Out

Sitting on a vinyl covered bench in the lobby of the hotel, I found myself people watching. I was waiting for the bus to return from Epcot with my family on board. I was ready to go home. The suit cases were packed, and stowed with the bell hop.

As my thoughts drifted back to the education conference I had just attended, I reflected on new information I had learned. A pediatric pulmonologist, Dr. Blake Noyes, surprised many of us there by saying that we should be taking our kids, six and older, for pulmonary function tests. He shared that it is very important to ensure that Alpha-1 kids do not have undetected asthma. Because asthma causes inflammation in the lungs, it would be important to treat undetected asthma to hopefully reduce the amount of damage occurring in the lungs. While I understood his logic, I heard myself sigh as I lamented yet another thing to add to our list of surveilling Alpha-1 in the girls' bodies.

As my thoughts brought me back to reality, Meghan's blond locks bounced up and down off her shoulders as she approached me. "Mommy!" she shrieked as she launched herself on my lap. "Mommy!"

"Hi Sweetie, did you have a good time?"

"Uh huh! It was good. Daddy and Grace went to look at the gift shop."

As she snuggled on my lap, a famous face in the world of Alpha-1 appeared in the lobby. John Walsh, one of the founders of the Alpha-1 Foundation, pulled his suitcase behind him and smiled at me. He was still dressed in his suit, but had removed his jacket. The heat was oppressive in Florida this time of year.

I motioned him over to us, and said, "Hi John. I thought you might like to meet my daughter, Meghan." He approached with a large smile and one that seemed rather grandfatherly in nature.

"Well hello there Meghan. It so wonderful to finally meet you. I've heard a lot about you and your sister." He bent down to Meghan's level and cupped her face with his hand. She slumped down in her place a bit in shyness, but my heart melted. His love was powerful. John is a ravenous advocate for anyone with Alpha-1 Antitrypsin Deficiency, and here he was taking a moment to meet my baby girl, Megsy Rose. He struggles for breath from Alpha-1 daily, but there he was making Meghan feel special.

For me, it was a memorable moment. Meghan had no idea what it meant to me. She just knew another one of Mommy's Alpha-1 friends was there to greet her. I found myself wishing that Grace could have met John too. I've been in the world of Alpha-1 since 2002, when Grace was diagnosed. Alpha-1 is so much a part of my life now, and I can't imagine not having met such wonderful people, such as John.

I'm so proud to be helping our Alpha-1 community in the ways I can help, yet still remain a hopeful parent.

Hopeful Alpha-1 doesn't make my girls life too difficult.

Hopeful that I'll be able to help my girls integrate a genetic disorder into their everyday lives as they grow up.

Hopeful for a cure for my girls and all the people who live their lives struggling to breathe or coping with liver disease from Alpha-1.


Friday, July 2, 2010

Keeping your Eyes on the Road

The other day I was on a bike ride with some friends. We were climbing Lookout Mountain in Colorado. I was feeling somewhat puny and ready for the climb to be over. I let my eye wander to the two radio towers on top of the mountain; one slightly higher than the other.

"Which one do I focus on?" I said to a friend.

"Focus on?"

"Yeah, which tower is the top? When do I know I'll be done?"

"Heather, you know when you're climbing you don't look at the top. You keep your eyes on the road in front of you."

Right.....eyes on the road in front of you.

Samantha turns four this month. Four....she is no longer a baby. We finally replaced her crib with a hospital-style bed. The baby-jogger I have put her in for years is starting to look a little small and we have an order pending for a wheel chair.

I can still carry her with ease....most of the time but I find myself bracing a little more. My arms get a little tired and her legs hang over my lap when I try to cuddle.

Because she going to be four.

Looking to the next four years is a little daunting. Samantha will only get bigger, god-willing, but also meaning that our house will require lifts, we will need a van or a bigger vehicle. Moving a child who does not move herself will only become more complex.

But in keeping with my biking advice,  I've decided not to look at the top of that hill. To keep my eyes on the road in front of me and focus on the joy of a four year old. Maybe I'll even find a spot or two where I can coast.

Four?!!! Holy Cow.

Heather Schichtel is a mom, writer and advocate to her daughter Samantha. You can follow their story at Samsmom

Thursday, July 1, 2010

How to Survive the Summer-Caregivers of Children with Special Needs

Ok, I just realized maybe I could’ve done this sooner in case some parents don’t have these things in place but if not hopefully it’ll help with future plans!  Here are some ways parents of special kids can get through summer:


Extended School Year

Children with special needs should have year-round reinforcement of what’s in their IEP (Individual Education Plan).  Many children are eligible for what is called “extended school year.”  What this means is during the summer they still attend school, usually for 6 weeks, and get the same related services such as speech, occupational, and physical therapy that they had during the school year.  Parents used to have to prove that their children “regressed” and lost skills but now it’s even easier to get ESY.  There’s a great write-up with more details on the Wrightslaw site at .  If you have any problems getting ESY for your child, contact your Parent Training and Information Center for free help found at


Camp-Including Special Kids

There are many types of camps:  some “typical”, some mixed, and some just for children with special needs.  I personally had a hard time because my daughter has both kidney disease and autism (so the medical places were concerned about her behavior and the autism camps were fearful of her health status).  So to help other parents, I wrote an article for Exceptional Parent on finding special camps which can be found at .  There’s an excellent national listing of special camps found at .  Note:  What works for us is having her go to camp the weeks before and after ESY and she still gets a week off.  Special note on vacations:  if you’re going someplace, prepare your child ahead of time with a story, how to travel, and bring things to keep him/her occupied during the trip!


Helping your child-Stay in a Routine

If your child doesn’t go to ESY or camp, what else can you do?  One thing I found out is to keep my daughter in a routine each day, otherwise she’s like a “lost lamb” and actually acts more “autistic”!  We keep her regular bedtime, wakeup, meals.  We also keep all her therapies going year-round.  Besides school therapies, my daughter has participated in special needs dance, Very Special Arts, therapeutic horseback riding, arts & crafts, Gymboree, music therapy, vocational/self advocacy training,  Special Olympics etc.  Next month I’ll get a list together of recreational activities.  Even if we stay home, I might write up a daily schedule that looks something like this:


Stephanie’s Schedule for Today

Saturday April 10

Get up & get ready for the day (get dressed & wash up)

Eat breakfast

Michael’s Kids Club 10-11


Howell Farm baby chicks & egg decorating 1-3      







Special Easter movie

Get ready for bed & go to sleep

You can put times or pictures next to each activity but you get the idea.  It’s ok to have downtime but helps if your child knows what to expect.  You might even want to do a basic schedule form and just write in activities each day.  Also, you can give your child choices (pick between 2 activities) or have them help plan the schedule.  My daughter actually asks what her schedule is and wants to know.  We also have a list of indoor and outdoor places to go and activities to do at home: like toys, music, exercise, books, crafts, computer, etc.  If all else fails, check out the “Mom I’m Bored Jar” at .  Hang in there and remember that enjoying activities like blowing bubbles, walks in the park, reading books, watching silly kids’ movies etc. with your child are the things that fun memories are made of for both of you!


Remain Hopeful,