Tuesday, August 31, 2010

Big Plans!

Member Meeting In Los Angeles

Who lives in Los Angeles? I'll be there from September 25 through October 2, and would love to get a group of Hopeful Parents together! Please e-mail me. I'm thinking of this as our first membership meeting, so if you do plan on coming...I also hope you will join (if you haven't already).

Awareness Campaign in November

In November we're are looking to do a major, national awareness campaign on our health as "extreme" parents. We'd like to remind all of you to take care of yourselves, we'd like you to remind your friends who are "extreme" parenting to take care of themselves, we'd like to provide tips on self-care...and, we'd like to promote all of it through the media.

In order to gear-up for this, we need to do a few things:

1. Get some cash in the bank. We have $422 in the bank right now. To distribute a press release that goes to the right people, nation-wide costs between $600-$900. How are we going to get the money we need? Through membership. Please join! We need an additional 25 members at least to meet this goal.

2. Understand which issues affect parents. Please take the Hopeful Parents Health Survey so that we can speak intelligently about your needs.

3. Stay tuned...we are considering finding families to profile on their local news stations as part of this campaign. If you are a member, you will receive a direct e-mail about this, so please join if you're interested!

Please Join Hopeful Parents

I think the message here is probably getting clearer. We need members! In order to lift our organization off the electronic page and into daily life, we need to start counting ourselves. I do hope you'll consider joining Hopeful Parents. In the coming year, we will have more gatherings of us in other cities across the country. And as a member, you'll be the first one to hear about important initiatives (like the local news stories) when they arise. As a member, you are our most important constituent...and your voice can only be heard if you join.

If you do nothing else today...please join Hopeful Parents!


Sunday, August 29, 2010

Gratitude on a morning in August

I believe you chose to be here.

I believe your soul knew what it was getting itself into.

I believe there is more going on here than I presently understand.

I know how guided you are.

I know you.

I know how worthy of a good life you are.

I know what a wonderful adventure this is for you.

I know how fun you are.

I know the contrast we face together propels us forward into an experience of joy, the likes of which "normal" can't fathom.  

I will try my damnedest to never make you responsible for my happiness or unhappiness.

When I fail I will apologize. 

I trust you to find your way.

I let go my white knuckle grip.

I honor the wisdom of your soul.

I am so very glad you are here.

So glad you are my child.


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. 

Her ten year old daughter has Asperger’s. 

All I really need to know I learned from my kindergartner

...with special needs, by enrolling him in school (and being his one-on-one paraprofessional for two days). [With apologies to Robert Fulghum]

  • No doesn’t always mean no; sometimes, if you whine enough or throw a hissy fit, you just might get what you ask for.  While that sometimes works for my nonverbal son, it’s better if you “use your words” —especially if you are an adult.


  • Just because you can’t yet do something doesn’t mean you never will.  This applies whether you are six or forty-six.


  • A genuine smile and hearty laugh can win over even the most curmudgeonly of individuals.  So can showing genuine appreciation for those same people.


  • People remember the innate goodness of genuinely good people.  People in positions of authority remember these same good people and are sometimes willing to go out of their way to help them— even if their parents might be a tad pushy. (What? It’s for a good cause!)


  • Sometimes, a gentle nudge isn’t as effective as a full-fledged shove— as long as no one gets hurt.


  • “Why not?” is a very valid question.   “Because those are the rules” is a very stupid answer.


  • Keeping up with the class isn’t as important as learning the same lessons.  There are many paths to the same destination.


  • Gym class can be fun.  Even for an out of shape forty-six year old who’s helping her son participate as fully as he can.


  • Hard work is its own reward.  It is also exhausting.


  • Hard work is much easier when you know someone believes, really believes in you.


  • The thrill of victory can take many forms.  It is just as sweet whether it’s an Olympic medal or the satisfaction of watching your child blossom before your very eyes.

Saturday, August 28, 2010

My Disappearance

This month I thought I'd share with you a poem my wife wrote shortly after Graham's diagnosis.


My Disappearance


The conversations in my mind

have grown too big, too intense

for the grocery aisle,

or the sandbox in the park.


I am mapping out miracles,

creative interactions,

scheduling brain scans, special meals

and blood work;

opening my door to therapists at seven am,

and pushing my true thoughts

deeply away.


My silence is trying to grasp

how to find time for a marriage

that has been placed in the wings

while my son’s life

is choreographed on center stage.


My silence holds possible dreams

of a normal life;

with family vacations, car trips,

and time not scheduled.


~Jennie Linthorst


Niksmom is, well, Nik's mom. She blogs about the ups and downs —and everything in between— of life with her husband (Niksdad), son, and two crazy cats at Maternal Instincts.  Nik is a 209-day NICU warrior/veteran who started life as a very medically fragile child. Now a rascally and exuberant kindergartner, Nik also has multiple disabilities.  He doesn't let those stop him!

Come follow the adventures as Niksmom and Niksdad try to stay one step ahead of Nik!

Friday, August 27, 2010

The Hardest Part

School starts in just over a week and I’m starting to get anxious about all the things we haven’t done to prepare. All the unmet summer goals are taunting me as I try to fall asleep each night. Oscar has barely started on the math workbook and collection of reading comprehension passages that the learning specialist assigned at the end of last year.  I did extensively research and purchase a netbook for him so that he can use adaptive software for writing assignments in fourth grade, but I haven’t spent any time teaching him to type.  I brought the computer (and loads of good intentions) on vacation with us, but it’s collecting dust on the bureau.  I also still need to set up an online sharing site so Oscar’s team of teachers and therapists can more easily communicate with each other. Oh, and of course, there’s the small problem of not yet having a signed IEP, which will require phone calls, letters and meetings as soon as we get back from vacation.

A few months ago I spoke with a television producer who was planning a show on Prader-Willi syndrome, the rare genetic disorder that Oscar was born with nearly ten years ago.  She had just started her research and somehow found me in the blogosphere. We spoke for a while and she asked lots of insightful questions, but this one really stumped me.

What is the hardest thing about having a child with PWS?

When Oscar was born and I read all the scary literature that painted people with PWS as garbage-eating monsters, I was darn sure that keeping Oscar from stealing food out of the neighbors’ freezers and a dozen other equally unthinkable places would be the hardest part of PWS.  But as I learned more about the syndrome and gained confidence in how we would maintain a food secure environment, I started to be more concerned about behavior issues – the tantrums, inflexibility, anxiety, and perseveration – that I read about in online sharing groups for parents of older children.  Many families say that behavior is the most challenging aspect of PWS, harder even than securing the fridge with a bicycle lock and begging classroom teachers not to serve shamrock-shaped cookies on St. Patrick’s Day.

While food and behavior are definitely challenging parts of our family’s every day, if not every minute, they are not the hardest parts of PWS, not now, not for me. 

I’m not naïve. I recognize that our food and behavior issues could escalate at any minute to a point where I might change my tune.  But today, even when I caught Oscar, not two feet from me, covetously fingering the dry goods in his grandma’s pantry, I thought “Hmm, the food stuff might be ratcheting up a little”, but I didn’t dwell on how hard it is to constantly monitor him and his environment.  It’s just what we do.

I know this does not make for interesting television, but as we close in on ten full years of dealing with PWS the hardest thing is the incessant coordinating and communicating.  Compared to my two typical children, raising Oscar just requires so much more – more paperwork, more emails, more phone calls, more advocacy, more doctors, more therapists, more school meetings, and way more educating. As my poor friends have heard me repeat all summer long, there’s just a whole extra layer of stuff to deal with when you have a child with special needs.

Thankfully Oscar is oblivious to my anxiety over my (and, frankly, his) lack of preparation for the start of school.  He’s had a wonderful summer and I don’t regret any of the choices I’ve made.  His days were filled with swimming lessons, horseback riding, and zoo camp. He cemented his biking skills and worked on playground games so that perhaps he’ll have the confidence to join in during recess next year.  He loved his twice-weekly math sessions with the educational therapist and even happily did the homework.  He also had lots of precious unstructured time -- creating zoos with blocks to house his prized plastic animals, playing silly games with his siblings, and cheering on his brother’s baseball team.  The things we have done have all been worthwhile so why I am so bothered by what we haven’t done?

I think I’m struggling because I work so hard to set reasonable goals in the first place. I’m not trying to win parenting awards or turn Oscar into a Prader-Willi poster child (though Oscar is awfully handsome and would be happy to pose for a poster).  I prioritize family time and have told teachers that homework doesn’t always fit too well into Oscar’s schedule because he sleeps so much and we want to spend time with him too.  I postpone non-essential doctor appointments till more convenient times and I tell therapists that we just can’t follow all of their home program suggestions. I learned to say “no” when Oscar was little because if we did everything that might help Oscar it would be too much.  But some things must be done and so I prioritize them.  We do need to finalize the IEP, and Oscar really does need to learn to type.  I have to (and want to) set up that online sharing group.  And there are a dozen more carefully selected tasks that I really thought I could accomplish this summer, and didn’t.  It’s always been that way.  And, so, for ten years, despite all that I am doing, I still have a never-ending to-do list circling in my head. 

That is the hardest part of Prader-Willi syndrome, for me, right now.


Mary is adding blogging more frequently at Finding Joy in Simple Things to her list of priorities and hopes to see you there as well.

Thursday, August 26, 2010

walk a mile...

I'd love if you would try something with me. Close your eyes. 

You're in a public place. You're a child. You're feeling afraid. The public space you are in is an overwhelming sensory explosion - you hear every single sound until a buzz rises around you. You can smell a nearby perfume, the body odor of another person, maybe something deep frying in the distance. Your eyes are being bombarded with bright lights, the movement of people around you, loud colours. You try to control the input - hands over ears, maybe closing your eyes. When that doesn't help, you try to make your own noises to drown out the buzz. Maybe you repeat something you heard earlier. Maybe you start to rock slightly, or careen off people around you. You're afraid. It doesn't matter what caused you to feel afraid in the first place. Because you don't have the ability to express your fear, you cry out. Then the cry becomes a wail, becomes a noise and feeling you have lost all grip on. Your are in the grips of a panic deep and inescapable.
Now, you are the parent of that child. You are trying to calm them, and what you tried yesterday is not working, so you try something else. Maybe you hesitated to come out at all for fear that this might happen. Maybe it's been weeks since you've even left the house with your baby. But your child is afraid, locked in panic and anxiety, and you are trying everything in your power to help. 
And you are being stared at. People passing by give you looks of disgust, or they mutter under their breath. They have solutions - take that kid back to the car. Take that kid home if it can't be out in public. Smack him. They would never, ever let their child behave that way in public. They look annoyed as they step around the spectacle, or they stare. 
You want to stand up, scream at them, tell them to stop staring, to shut their mouths and keep their opinions to themselves. You want to tell them that this is the fourth time this has happened this week, that you are exhausted and embarrassed and you want more than anything in the world to have that perfectly behaved child who can go out in public. You want them to understand that your child is not misbehaving. You want them to have just the slightest glimpse of what your child is feeling. You want them to see that you are trying, that you try every single day to help your child get their emotions back in control, and that they will not learn to control their emotions by being dragged through a crowded, public place, kicking and screaming and panicking, back to the car to make some point about how you just won't stay somewhere if they can't handle it. Because the fact is, they can't handle it, because they have to learn to handle it, and you can't teach them to handle it in the parking lot. 
You just want a little bit of compassion. You don't want to be stared at or judged. You really don't want to hear their solutions. You'd love a kind smile, even though it might unleash a torrent of tears. You'd be over the moon if someone staring paused a moment to help you manage your other child or children, or offered to take something from your full hands. You just don't want to feel as profoundly alone as you feel in that moment.
Stephanie O is opening up on her blog, sharing pretty pictures, and wants you along for the ride.

Wednesday, August 25, 2010

Talking to The Sad Mom

When I heard the words, “With kids like these you have to take them home and love them as long as you have them” spoken by our pediatrician in 2001, I couldn’t believe my ears. When I looked at my husband as my eyes were filling with tears in the small exam room he’d already started crying.

Two days earlier as I was packing to go home from the hospital with our new daughter, a doctor called to tell me that my beautiful, big-eyed, much wanted and loved girl named Quinnlin would need a kidney transplant to survive. The doctor also told me to find a nephrologist, “A what?” I said. “A kidney doctor” she told me, which makes me laugh a little today because now we have several that we call our own. Three months later we found out Gage, our then three year old son’s body held a secret all along; he had the disease as well. Autosomal Recessive Polycystic Kidney Disease, a rare form of PKD referred to as ARPKD, known only to 1:20,000 children, two of which were mine.  

Looking back I can see how far I’ve come from those first sad months (a time I refer to as “The Fog”) when I was learning how to cope with a new kind of motherhood, couplehood and womanhood. I’d married my beloved never considering that one day we see our (maybe) kids through medical interventions, trauma, research studies, dialysis, kidney transplants, mental health challenges and the always present special education intervention. When I think about those first several months, I’m sad for that mom, even though I’ve moved on in a positive way through advocacy and activism.  

I want to look back at that mother who cradled her sick baby while she nursed her, looked down at her face, cried out of sadness and tell her that it will be hard. There will be days of great fear. Days she’ll feel like giving up. I want to tell her that the time between her bouts of crying and sadness will lengthen and she’ll go many days, months even, without crying about her sick kids. I want to tell her that through it all her family and friends will support them and love them and will have enough faith when she doesn’t. I want to tell her that her marriage will remain strong and that her and her beloved will have humor in their life again. That they will laugh. I want to tell her that the people she will meet along the way because of PKD will make her a better person; a stronger person. I want to tell her that no matter what, she’ll never give up and on many days, in fact more than not, she’ll even be happy.


Julia blogs her family's story at Kidneys and Eyes and is co-founder of a social networking site, Support for Special Needs.com. She writes for PKD Progress Magazine, Parenting Children with Special Needs Magazine, She Posts and serves on the Board of the PKD Foundation and the Parent Advisory Council for Children's Healthcare of Atlanta.

Tuesday, August 24, 2010


Really, there is no closure. I know.

My son, Max, had a stroke at birth that resulted in brain damage and cerebral palsy. We live with the highs and lows of his special needs every single day.

Closure? What closure?

And yet, in my mind, there is a way to get some: I want to call the doctor who guided me through my pregnancy. I've been thinking about it for years. 

I adored this doctor. It was my first pregnancy, and I was a very curious and sometimes nervous newbie. “Hi, kiddo!” she’d say when she walked into the exam room. I’d reel off my list of questions, she'd answer them all wisely and calmly. She’d make me laugh. In some ways, she felt like a big sister.

She was one doctor in a group practice of five. There was a chance she wouldn’t deliver my baby. And as fate would have it, she wasn't on call the morning I was ready to go. The youngest doctor in the group did the deed, a soft-spoken man I’d met only once before. I had a c-section.

After Max had been whisked away to the NICU on his second day of life, my doctor came to visit. She was teary-eyed. “I’m so, so sorry,” she said, and I knew she was. She gave me a hug.

That was the last time I saw her.

Over the years I’ve thought, with bitterness, how the course of our lives would have been completely different if a coworker had never recommended this doctor (or her practice) in the first place.

But I’ve also thought tender thoughts about her as I’ve navigated the territory of my own pain and grief. Has she thought about Max? About me? Wouldn’t she like to know how he’s doing? I’ve Googled her; she’s still at the same practice. So is the doctor who delivered my son, a delivery thought to have caused a stoppage of oxygen to his brain. Him, I couldn’t bear to see. I do not hate, but I have not forgiven. Even seeing his name in print is distressing.

Yet my doctor, my old doctor, I want to connect with. I want to show her that yes, I have a child with special needs, but he's doing incredibly well for himself. And he's beautiful. I want her to make him laugh.

I don't know what's holding me back from calling her. 

Worlds apart

I just attended my sister-in-law's annual backyard bash. Her husband's an advertising executive who's also an accomplished blues singer. Each year the family hosts a garden party featuring his band.

There's always a theme and people dress in costume. This year it was the 'dirty 30s' and people came as hobos or high-falluting fashion icons. My nieces are gracious, brilliant, multi-talented young women who always perform at these soirees. Tonight we sat mesmerized as they sang gospel songs in perfect pitch.

We don't normally dress in costume, but this time we broke with tradition. My hubby wore suspenders and slicked his hair back, my younger son wore overalls and a cowboy hat and my older son -- the one with disabilities -- wore a big straw hat. One of my daughters was MIA at a Justin Bieber concert and the other didn't feel like dressing up.

I have alopecia, a rare auto-immune disorder that only affects the hair: all of it fell out eight years ago. I typically adorn my head with bright crocheted skull-caps -- "happy hats," I call them -- or go bald. But tonight I wore my human-hair wig, the one I haven't donned in eight years. It was dress-up, after all. And on top of that I placed a lovely woven raffia hat with a black ribbon. I wore a plaid vest and jeans and black, patent-leather shoes. Without my usually-conspicuous head, I blended in with the other party-goers, many who came from the neighborhood. I could pass as one of the 'normal' people, I thought, with a small measure of glee. I could pretend.

The night started off okay. We wheeled Ben in and greeted the relatives. Ben was recently discharged from hospital, where he's been an inpatient since April, following major hip and knee surgery. He's still not walking independently, which is a surprise because we had no idea going in how rough rehab would be.

Ben -- who is non-verbal and so typically on the periphery of these social events -- astounded me by signing "You look beautiful" to his cousin.

We had a few snacks and then my hubby took Ben inside and downstairs to the widescreen TV so he could watch a Star Wars movie. Ben, 16, has a rare genetic disorder that causes bone problems, low-muscle tone, unusual craniofacial features, hearing loss and short stature. Oh yes, and "cognitive impairment" as it noted on his profile at the sailing program he attended last week. I don't use the term, so it was a surprise to see it there. He's about the size of a six-year old and a physician once aptly noted that he looked 'elfin-like' (I've always been partial to story book elves and dwarves).

Because it's challenging for Ben to interact at noisy parties, we often "default" to taking him down to the basement to watch a show he likes. In this case, our other kids, 11 and 13, joined him.

I chatted with relatives outside and my hubby and younger son came to dance with me. At one point I went downstairs, hoisted Ben on my back and brought him up and out to boogie, piggyback-style. He laughed hysterically. I could only do this for about 10 minutes because my knees are bad.

Then my hubby stood him up and we held his hands and swayed side to side.

A family friend noted how terrible it was that Ben's first hip surgery backfired (the hardware dislodged, pulling out a piece of bone with it, necessitating the same procedure a second time two weeks later). "Given everything he has to go through on a daily basis as is!" she said.

I nodded, and thought: You have NO IDEA. You have no idea what pain this kid has gone through.

I was about to tell her he'd been in hospital for three-and-a-half months, and then I thought: What's the point? She couldn't understand.

Ben won't follow his cousins -- or this woman's strapping young son -- to university, or to travel abroad or even just to stand at the mike at the annual party, captivating the audience with a song or joke.

But when he eats a carrot and signs, with a grin: "What's up doc?" or kisses a fish he caught at camp before throwing it back, or makes a preposterously long gasp at the scary part in the movie -- just to make sure I get it -- my life feels rich and immense and whole.

I don't understand her world, I thought, feeling sorry for myself, and she can never understand mine.

I sat down on the deck atop the garden and looked down on the dancing revellers, twinkling lights and bopping band. I finished my glass of wine, and had another. And soon it seemed the entire glittering party was floating away from me. I was an island, and they were moving out to sea. I watched these healthy, untouched young bodies swing and sway and I thought about the thick, long, bumpy red scar on my son's thigh -- the same one worn by so many kids on the orthopedic unit. In my mind it was a foot long, but when I checked today, on his teeny-tiny body, it only measured six inches.

I began to cry.

"What's wrong?" my husband said, and I shook my head, mute.

We left early, before the kids got their cake. We stopped at Starbucks, but they were out of frosted cupcakes, my daughter's favorite. "What about Sobey's?" I asked, suddenly willing to mount any road trip for the right dessert. "Aren't they open all night?"

I took slow, deliberate bites of my Starbucks lemon loaf -- the one with white icing and a thread of raspberry -- hoping it would soothe the ache in my chest, soak up the tears that continued to fall. And without a peep, my hubby drove us to Sobey's.

Louise is communications manager at Holland Bloorview Kids Rehabilitation Hospital in Toronto. She produces BLOOM, a magazine on parenting kids with disabilities that combines firsthand parent voices and professional advice. You can follow her on the BLOOM blog or get on the list to receive BLOOM magazine by e-mailing her at lkinross@hollandbloorview.ca. She's thrilled to be posting here on the 24th of each month. In addition to her son Ben, Louise has three other children, two adopted from Haiti five years ago.

It's my birthday

This is the one, the birthday at which I become the age that people joke about....you've heard it, "39 and holding".  I'm there now, entering the last year of my 30s, and looking back at all that's happened in my family's life during those 9 years. 

It feels like a lifetime, like I'm not even the same person I was back in my 20s.  So much has changed, so much has happened in the space of 9 years.  In my 20s, I was immersed in career, a band director on the fast track, and life was all about competition, climbing the local ladder, making my name.  Life pretty much consisted of my career, my husband, our new house, and a cat. 

Then, exactly 2 weeks before my 30th birthday, our first child was born.....10 weeks premature.  Thus began my new life on "the road less traveled" as Frost said.  Previous priorities vanished, I quit teaching abruptly and never went back to the fast track again.  I knew nothing about the world of "special needs parenting", and I mean nothing.... nothing about preemies, the autism spectrum, sensory integration, ADHD,  IEPs, 504 plans, OT, PT, and the list goes on.  As years passed, I became immersed in my boys, as good parents do, but in my case it's immersion in learning all that I can about their diagnoses, their needs, their therapies, their accommodations.  I even decided, after much soul-searching and the persistent feeling of a "calling", to go back to college and begin a whole new career so that I can understand my own boys better and work with other kids who face similar challenges. 

Along the way over the  last 9 years, people have often said things like "I don't know how you do it, how you handled having two NICU babies, how you manage living day to day with the challenges you have" etc.  And believe me, I've thought about it too.....how DO parents like us manage?  What is it that allows us to keep our heads up (most of the time) and keep on putting one foot in front of the other along this path that is so often lonely, heartwrenching and dark?  I don't have the answer, and I don't even think the answer is the same for each of us.  In my case, I've just always said "you find a way to do what you have to do", you find the strength from somewhere, even when you didn't know you had it.  I'm by no means perfect, FAR from it.  I'm not always strong, not always able to hold it together; just ask the other parents from Mr. L's baseball team who've witnessed a meltdown, or the teachers that both boys have been blessed with who've sat so sweetly by my side as I cried during IEP meetings, etc.   

But I know that I'm a bigger person (and not just in what the scale says) today than I was at 30, my life is richer (although that's not what my bank says), and I am better for it.  My boys are true miracles, blessing me on a daily basis with their amazing spirits, infectious laughter and incredible talents.  Just as I would never have been able to envision this day, this life, when I turned 30, I today cannot imagine my 40s and what they will bring.  Since I am honored to write a post here on the 24th of every month, I'll keep you posted, ok?  Look for my post on August 24, 2020 and I'll let you know how it went. 

Jennifer is a Music Therapy student, mom to Mr. Literal with Asperger's Syndrome and the Energizer Bunny with severe ADHD, and she blogs (on alternating Thursdays on months with an R in them while she's wearing yellow) at Against All Odds. 

Monday, August 23, 2010

Our Virtual Future

I feel like taking a little virtual trip into the future today. I’ve decided that for a few moments I will be the architect of my family’s future, and I will share that building with you! Here is an update from my virtual life, 10 years into the future:


My birth son is now 29 years old. He graduated a while back from Virginia Commonwealth University with a degree in computer Information Systems and a minor in mass communication. A year after that, he graduated from Wharton with his MBA. After agonizing for almost year over where he would live with his beautiful wife, Rose, and my sweet little grandbaby, Elizabeth, they finally settled in the suburbs of Washington, D.C. Chip works for a newly formed satellite radio company that is exploring many unique and cutting-edge technologies for delivering radio content to people. He’s actually getting his hair cut on a regular basis now, but he still hasn’t given up his frayed bluejeans.


Jessica is also now 29 years old. Just two years ago, she completed a work/study program for people with intellectual disabilities at our local community college, and received her certification as a nurse’s aide. This was a long term dream of Jessica’s, and I don’t think I have ever seen a bigger smile than the one on her face as she walked to get her certificate. She is living in a commune near the beach, and although it is reminiscent of the 1970’s to me, it is a lovely place where folks with disabilities as well as those without live peacefully together. There are always friends around to help Jessica if she needs something, and I believe the peaceful environment has really helped to keep her aggressive outbursts in check. She has her own little dog which just happens to look exactly like our dear Lizzie, who passed away seven years ago. Jessica and Fluffy, the dog, love to go for walks around the commune, and can spend many, many hours visiting with friends. Although she has come home for visits on several occasions, she prefers if I visit her there. I think she feels safe and at ease in her commune apartment, and something is telling her not to leave. I understand, and I am just happy that she is so happy.


Corey is now 27 years old. After spending 4 years in high school in the JROTC, he decided to join the Marine Corp when he graduated. Even though he and I both thought boot camp was going to be his demise, he persevered and is today stationed in 29 Palms California. He is learning electronics, and I believe that will help him greatly if and when he decides to leave the service. Thankfully, the war in Iraq ended 8 years ago, and I didn’t have the worry of him going to war. He is now talking about applying to college, and I am encouraging him to do so. He also is married – to Lauren – and she is a wonderful young lady. Corey did a great job finding a good wife! They haven’t given me any grandchildren yet, but I think the time is nearing that they will.


Ashley is going to be 25 years old soon. She’s been out of school for many years now and is still trying to decide whether she prefers to work at our local greenhouse or as a tester for children’s computer software. While she has been making up her mind, she and I have been traveling the country in my hot little red convertible sports car (bought once the oldest kids left home and I no longer needed a van). We are making the rounds of the television talk shows to discuss the publication of my book, Blind Leading. Although it’s been out for a couple of years, it is still on the New York Times top 10 list, and we are still getting invitations to talk about it. Most of the shows would fly us to their locations, but Ash and I enjoy the car ride more.

Ashley got a prosthetic eye almost 8 years ago, and I think she has finally stopped pulling it out to surprise people. Either that, or it’s no longer a surprise to everyone we know. She has redecorated her bedroom 6 times in the last 10 years, and is still requesting that we expand the size of her closet so she can fit in more dresses and Converse Hi-tops. I have a hard time refusing since Converse is using her in some of their shoe commercials.

She has learned Braille and is an avid reader. She will sit in our family room after turning off all the lights and read for hours. I do have to keep reminding her that I need to lights to read though.

Even though her first boyfriend, Miles, dumped her in 7th grade because she couldn’t stay up late enough to go to the 8th grade dance with him, he has realized the error of his ways, and 5 years ago, came back into her life. They are so cute sitting together on the couch while Ashley tries to teach him Braille also.


Ronnie graduated from high school the same year that Ashley did.  I was probably the proudest Mom in attendance at the graduation ceremony to see my two youngest children walk/roll to the podium to get their diplomas!

 Ronnie went on major in social work at Virginia Commonwealth University, and so many times I have wanted to go back to the Guardian ad Litem he had when he was in the foster care system and say, “See, you were so wrong.  Ronnie was not the stupid, naïve child you insisted he was.”


Ronnie is living with his girlfriend from high school, Brittany, and their big, old Labrador Retriever, Max.  Both Ronnie and Brittany work for our state’s protection and advocacy organization as advocates for people with disabilities.


I would love to see a wedding in their future, but honestly, they are so happy and committed to each other that I don’t believe a piece of paper would make any difference whatsoever.


I am finally not in pain all the time because a new medication was developed about 5 years ago for Lupus and Rheumatoid Arthritis. It has worked wonders in my life. Even though I am getting much older, I feel younger now than I did 10 years ago all because the pain is gone. And I LOVE my little red convertible!!

Our life is good. Everyone is healthy and happy. Of course, since I am dreaming this 10-year-scenario, I wouldn’t have it any other way.

What are your dreams for 10 years hence?

Sunday, August 22, 2010

Let's Do This Thing!

We're looking for you! Yes, you.

We're looking for every parent of a child with special needs. We're looking for their family members. We're looking for the professionals who help them. We're looking for the organizations who provide them care. We're looking for the businesses whose products make their lives easier.

Can you imagine for a moment what it would look like if "the village" that cares for children with special needs came together as one, enormous unit to advocate on behalf of the children and the families who raise them?

Imagine for a moment the changes we could make within our government, our health care systems, our society?

We parents struggle with anxiety and depression, with finances, with health insurance, with awareness and sensitivity, and so much more.

Society doesn't take us into account much -- and, at this time, why should it? We are the minority.

The only way any minority has ever changed society is by coming together with one voice and advocating for themselves. Hopeful Parents has a bold vision that someday, we are able to do just that.

Every journey starts with the first step, and ours is no different.

In order to get to "someday," we need to start with today. We need to step-up and be counted as an individual or organization committed to making the world a better place for children who have special needs and their families.

Please, join us today.

- - - - -

Individual Memberships

Membership per individual is $25 annually. Individuals include parents and extended family members. Only one member per $25 fee.

Individual members will receive:

  • the Hopeful Parents electronic newsletter
  • information on local chapter news when it becomes available
  • priority communication on special announcements


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Professional, Organizational, and Business Memberships

Membership for professionals, non-profit organizations and businesses who serve children with special needs and their families starts at $100 annually.

For $100, members will receive:

  • the Hopeful Parents electronic newsletter
  • a listing in the searchable Hopeful Parents Resource Directory that includes your name, web address, and up to 10 keyword search terms; listing expires after one year from date published

For $125, members will receive:

  • the Hopeful Parents electronic newsletter
  • the directory listing mentioned above, plus your street address and phone number added to the listing; listing expires after one year from date published

For $150, members will receive:

  • the Hopeful Parents electronic newsletter
  • the directory listing mentioned above, plus a description of your service/product(s)/business; listing expires after one year from date published

For $175, members will receive:

  • the Hopeful Parents electronic newsletter
  • the directory listing mentioned above, plus your logo; listing expires after one year from date published

For $1,000, members will receive:

  • the Hopeful Parents electronic newsletter
  • the directory listing mentioned above; listing expires after one year from date published
  • your logo with a link on the Hopeful Parents home page for one year from date published
  • the designation of Sponsor


Eat and Run

Right now, we’re on summer vacation in New York.  It’s been a bit of a break neck tour of relatives, but G has been magnificent at handling himself.  Although I’d like him to talk more, he acts appropriately in each situation, has been a good sleeper and for the most part a good eater.

But good eating for G. is usually chicken nuggets and fish sticks, with the occasional cookie or ice cream thrown in.  On this trip, it’s meant quite the bout of constipation with some trapped wind that had G. howling through the night two nights in a row (the nights he wasn’t a good sleeper).  As much Miralax as I can give him, he will not give up the poop. 

Is it behavioral – was he really a little uncomfortable with all of our moving around and he’s taking back control?  Was it physical and we didn’t bulk him up enough to get “things moving”?

I can tell you, a great sigh of relief will be heard when he finally relieves himself.  Hopefully, it will be just in time for our return flight to Chicago – and not actually in transit.  Oh, the suspense won’t kill me, but I think I do see a little grey hair coming on…

Saturday, August 21, 2010

An ease into revelation

Anyone who reads my personal blog knows that I recently returned from a three week vacation that was -- to put it bluntly -- horrible. I won't go into any of the details, here, but the main reason why it went so badly is that I shouldn't have gone at all.

 My oldest child, Sophie, has a severe seizure disorder of unknown origin that is medically refractory. She is fifteen years old but has had seizures, almost daily, since she was three months old. Quite recently she also developed a rare seizure disorder called ESES (electrical status epilepticus in slow wave sleep) which is wreaking havoc with just about everything. Because her deep sleep is literally consumed (90%) by sub-clinical seizure activity, during the day she is not only exhausted but a terrible wasting occurs. Despite eating normally, she has lost weight -- almost ten pounds. She has many large, tonic-clonic episodes nearly every day and on the "good" days sleeps most of the time. Walking, something that she generally adores, is difficult and more than half the day is spent either sitting in her stroller/wheelchair or sleeping. She is being treated with infusions of immunoglobulin, but the efficacy is uncertain. The ESES is something that has reoccurred. She had it over five years ago and was treated, successfully, with IVIG (intravenous immunoglobulin) and her brain wave activity returned to her normal (highly dysfunctional, but not ESES). We are hoping that the same thing will happen, and our beautiful girl will feel better, be better.

I agonized over whether or not to bring her on our annual summer vacation, when we travel from Los Angeles to the east coast to spend time with my extended family. I agonized because while we've done it many times before, it's always hard on us and harder on Sophie. The attempt is well-intentioned -- I want her life to be as "normal" as possible. I want her brothers to know that she is a part of our family in every way, that her disability does not define her, or us. I want, dare I say it, to cling to the hope that maybe this time, things will be different and she will be good on the trip. Many of you know this "drill." I've played it out many, many times over the last fifteen years, walking the tightrope of hope, acceptance and reality with the balancing stick of common sense.

I fell off the tightrope this summer, took her on the trip and we all suffered the consequences. I won't go into those consequences here, but what I realized is that right now, Sophie is ill. She is sick. She needs to rest, at home, and hopefully get better. I don't need to feel guilty about "including" her. It might sound dramatic to call this a revelation, but to me, it was. I have felt extraordinary pressure, self-induced, over the last year or so, watching her decline. It is the sort of pressure that makes me feel breathless, that gives me a sense of urgency that I need to do something, do something else, do more. It's a bit of what I experienced when Sophie was a baby and newly diagnosed, when I saw her development plateauing, the drugs not working, the windows slamming.

There is a difference between being disabled and being ill.  For the past six months, I have been in a bit of a denial stage, dreading the diagnosis of ESES and knowing instinctively that Sophie was having a recurrence. Outside of her initial diagnosis of infantile spasms at three months of age and the subsequent fruitless (and brutal) treatments we subjected her to, the time she had ESES five years ago was the most hideous experience of my life. 

It's no easier this time, but I can stop struggling against negative possibility and ease into accepting where she is right now. I am mindful that she is ill. She needs to rest, and so do I in order to take proper care of her. She will get better, just as she did before. I hope that.


Elizabeth appreciates all your good wishes that Sophie will respond to the IVIG and get better. She can be found blogging over at a moon, worn as if it had been a shell.

Friday, August 20, 2010

The Everyday

We’re so taken with the milestones. When you have a special-needs child, there are plenty of things that you wonder if your child will ever be able to do. So when they actually happen - when you hear your five-year-old say I love you, even though it’s echolalic, or when your child sleeps in their own bed, or doesn’t wet it, or when he holds a pencil for the first time, or pets a dog – we note the occasion with much fanfare, and rightfully so. We know the effort involved in making those things happen, how long we waited, how much we hoped. They are nothing less than miracles.

But milestones don’t happen every day, of course. If they start happening every day, they’re no longer milestones. They become part of our daily life, the status quo. They are the everyday. And sometimes I find more hope in the everyday than in the milestones. Why? Because we can’t live from milestone to milestone. We live from day to day.

My son was diagnosed with autism at the age of three and did not start talking until he was five. In 1997, we didn’t know for sure if he could learn to talk. And so when he slowly got started - first with various stages of echolalia, then, when he was using more spontaneous speech, learning pronouns, articles, tenses, and syntax - I was overjoyed. It didn’t matter to me that his voice was always flat, usually expressionless. I figured it would always be that way, and I loved it. I never even hoped that he would develop voice inflection because I was just glad to hear his voice in the first place.

Two years ago, our regional autism consultant created a weekly social skills class for my son to attend at his school, so that he could learn to communicate more appropriately with his peers. The object of the class was to instill conversation skills and teach socially appropriate behavior as well as how to interpret gestures and non-verbal communication. But something unexpected happened, and I can only attribute it to the social skills class. About three months after he started the class, I began noticing that he was using voice inflection. And he was doing it appropriately, not just random variations. He was putting emphasis on the right words and his tone was no longer flat. And he’s been doing that for almost two years now. The boy who, for so many years, could only parrot lines from Disney movies or Scooby-Doo cartoons when he wanted to interact with people is now regularly conversing with voice inflection.  That is my everyday. And that is what gives me hope.

It’s true, the milestones sustain us. They are remarkable, miraculous, and worth every bit of celebrating. But when you sit down and stop to think about it, when you realize, hey, we’ve been using the PECS cards for three months now and my child rarely shrieks at home anymore, thank God, that is your everyday. That is where hope lies.

I’ve had many different everyday realizations over the years. In fact, that one about the PECS cards was one of them, over twelve years ago. Then I had another one a few years later when I realized that we were no longer using the PECS cards. There have been many other everyday realizations, equally hopeful. But now, my son is speaking with voice inflection, an unexpected gift, and that is my everyday. What’s yours?

                                  Tanya writes TeenAutism.

Thursday, August 19, 2010

Good Enough

In the same discussion that the neurologist confirmed: "your daughter meets the criteria for Asperger's Syndrome", he also told us that we were "good enough" parents, and we couldn't have done anything to have changed this. I bristled at the term "good enough", even as he explained that an eminent child psychiatrist, Donald Winnicott, had coined the term to describe the ideal parent. This ideal parent, according to Winnicott, is good enough, not perfect. The good enough mother initially creates the illusion of perfection, meeting all the infant's needs, then slowly enables the child to transition towards independence, shattering the myth of perfection.

Instead of being pleased that my parenting was deemed "good enough", I took this to mean that I could do better. I wanted to be the perfect mother to my extra-special child, I felt that she deserved nothing less. And so I spent the months that followed investigating every therapeutic intervention, every new discovery, reading every book about autism that I could find. I'd spend hours on the floor with Pudding, trying to emulate her speech and occupational therapists as best I could. It wasn't good enough. I'd set myself a standard of perfection that was miles away from reality. Instead of enjoying my time playing with Pudding, I'd get frustrated that progress wasn't coming fast enough. It stopped being fun for both of us.

Pudding loves art, but has significant fine motor delays. Frequently she'll try to draw something, and when it doesn't match the image in her mind's eye, she gets angry and scribbles it out. Her desire for perfectionism gets in the way, and consequently limits her progress. She is a chatterbox at home, but virtually mute in company. I often wonder if she is so silent around other people because she so fears making a mistake. I want her to know that any attempt is good enough.

Lately I've realized that some lessons need to be demonstrated, behaviors need to be modeled. I'm far from the perfect mother, and trying to be puts too much pressure on all of us. I need to really shatter that illusion of perfection, and show Pudding that I make mistakes, I'm not always successful, but I keep trying. The less I've focused on developmental goals when we play together, the more fun we have, the better the connection between us, the more she thrives. We don't achieve everything we set out to, sometimes we achieve nothing at all. But we enjoy being together, and that is good enough.

I've enjoyed reading the moving and inspirational posts at Hopeful Parents for a year now. As I write my first one, I'm still having to remind myself that it doesn't have to be perfect!

You can find Spectrummy Mummy at her blog http://spectrummymummy.wordpress.com or on twitter @spectrummymummy

It's Been One Heck Of A Year

It's been just over a year since my husband Jeremy got into a slight altercation with an Improvised Explosive Device in Afghanistan and came home with a sizable chunk of his left calf missing and his heels in about 200 pieces.  On this day a year ago we were still unsure whether or not Jeremy's left foot would need to be amputated, and I had to find games other than Minesweeper to play on my computer while at the hospital because I would tear up every time I lost and saw that little smiley face with X's for eyes.  You know, because he'd been hit by a mine.

We've come a long way since then.

I'm happy to say that Jeremy still has both feet, which is great because now he can branch out and be more than just a pirate for Halloween parties.  Since he has a significant limp but no peg leg, he can also dress up like that hunchback in Young Frankenstein.  That will be awesome.  I can make him a hump out of paper-mâché. 

I am also delighted to tell you that for a number of months he has been able to use the restroom without any assistance on my part.  That was a great day for us both, let me tell you.  We considered setting the bedside commode on fire to celebrate, but decided that would be unsanitary.  Oh yeah, and also he's off all pain medication and is walking without a cane, driving, has gone back to work, etc.  So he's pretty much autonomous now. 

Our son Connor weathered this year remarkably well (other than some nasty health issues), and the only real residual effect we've seen is that he freaks out whenever he sees suitcases in our house-- probably because he associates them with Jeremy leaving.  He never seemed anxious about Jeremy being in a wheelchair (and Jer spent about six months in the wheelchair pretty much full time) and has accepted all of the changes in our lives with remarkable grace. 

So remember when a year ago I wrote here about finding our new normal?  I'm happy to say we're there.  All that stuff with Jeremy's feet?  Details.  In the end, I'm still married to an amazing man.  Only now my amazing man walks with a limp but looks a heck of a lot like Vin Diesel, due to the four hours a day he spends at the gym doing rehab. 

I don't really have a problem with that.



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


Wednesday, August 18, 2010


Left hand behind his head working to keep it from bending backwards, right hand trying to brush his teeth for him. His arms swing to block me from approaching his mouth, I bat them back down. We’ve been doing this dance for a year now – ever since he got braces, and it is just that, a dance. He is the leader, and I follow in step. A dance that has no choreography and would be miserable to watch. 

We start off in one part of the bathroom and by the end of the teeth brushing session we have circled it several times, bumped into cupboards, backed into the toilet, and completely tangled the throw rugs.

“Why can’t you just brush your teeth like a normal person?” I say, instantly regretting it. It’s not the worst thing I’ve said to him in fourteen years, but it’s up there. I feel terrible. I feel like a bad parent. I feel incapable of going through this every single day until the braces come off, and there is no way on God’s green earth he can brush them himself.

“Just get a timer and have him brush for three minutes!” the perky, young, clueless orthodontic assistant says every time we’re there.

Three minutes of chewing all the toothpaste off and holding the brush in one spot, does not a clean mouth make, I long to tell her. Doing a bad job longer, does not turn it into a good job.  Instead I just smile and say, “Good idea.”

Truth be told I do not wish Rojo were “normal,” I love him the way he is and he is our normal. Normal isn’t a place I live or even want to live.

But I wouldn’t mind a visit now and then.



Tuesday, August 17, 2010

The Wheels on the Bus


I’m sitting in the driveway thinking about my first post for “Hopeful Parents”.  It’s 1:30pm and I’m waiting for The Van.  The Van is the white ten passenger school van that brings my son home from his summer program.

When we were offered the option of The Van at my son’s first IEP meeting last winter, I immediately said “no”.  I gave them many reasons, of course.  I told them I thought at age three he was too young to be on The Van.  I told them I liked bringing him to school and picking him up so I could have that teacher contact.  I told them that I thought he just wasn’t ready to be on The Van.  So we checked “decline” in the “transportation” box on the IEP form.

The reality of course was that I wasn’t ready for him to be on The Van. 

I had many reasons.  I blamed it on my germphobia – sharing car seats with multiple kids…that was a surely a recipe for catching multiple diseases.  I blamed it on my inner control freak – I wanted to know directly from his aide how his day was and I didn’t want to be out of the loop of things at school.  I blamed my helicopter parenting tendencies – I didn’t want someone else driving my kid around.  What if he got scared or upset?  What if he had to go to the bathroom?  What if the weather’s bad and The Van gets stuck somewhere? And I blamed it on his autism.  It would be too many changes too soon, as he moved from just three mornings a week at school to a five day full day program.  Wouldn’t he need me to help him get through the new routine?

But as I thought about it more, the real reason hit me in an ugly and sad way.

I wasn’t ready for The Van to come to my house. 

The Van is our town’s version of the short yellow bus.  Everyone knows what The Van means.  I wasn’t quite ready to admit to the world that my son had special needs.

When we got his autism diagnosis in December 2009, it wasn’t much of a surprise.  We knew for a while that something was different about him, but when he started preschool we could really see that he needed help.  Getting the PDD-NOS diagnosis meant we could get him that help so he could succeed in school and at home.  And while I was ready to admit inside the four walls of our house that our son was autistic, I wasn’t ready to broadcast it to the neighborhood.  In my head, that’s what The Van would have done. 

Fast forward to June and I had made countless trips back and forth for pickup and drop-off, and suffered through a thousand guilt trips as I dragged his little brother up from a nap to get to school on time and rushed back to meet his older brother at the bus stop. I was driving my mini-van around our little town with the speed and precision of a New York City cab driver.  Then, right before school ended for the year, the teacher called to get permission for my son to ride in The Van to an off-site bowling party for the whole class.   It was the school’s policy that the kids in the special learning program traveled to off-site events in The Van.  I agreed and sent in my permission slip.  When I picked up my son at the end of the party, I asked him what his favorite part of the day was.  His response?  “The Van ride!”

So when summer school time came and the question of using The Van for the ride home came around again, this time I said “yes”.  I told them it was for my son’s benefit.  He was older now.  It was a good chance to practice his social speech skills with his friends.  He was familiar enough with the routine so The Van ride wouldn’t overwhelm him.  But really, it was for me.  There would be no rushing out to pick him up at school.  No waking the baby, no driving around like a maniac from my older son’s camp to get back in time for lunch and then pickup.  By still driving him in the morning, I’d continue to have that teacher contact.  We’re at the end of summer school now and it was the best decision I ever made.  The Van ride home is still my son’s favorite time of day.  He loves looking at the trucks out the window with his buddies, and the ride calms him and helps him decompress after a busy day at school.

More importantly, I’ve grown comfortable sharing our story in town and now I am happy to have The Van pull into my driveway.  Just like every other new specialized service we’ve added to my son’s routine, it has only made life better for him and for all of us.

In fact, The Van is pulling into the driveway right now so I need to go.  Besides, I’m pretty sure my first “Hopeful Parents” post just wrote itself. 


Alysia Butler is a stay at home mom to three boys, one of whom has autism spectrum disorder.  She writes about that and other things at http://trydefyinggravity.wordpress.com and is trying to figure out Twitter @trydefyinggrav.

i disagree


Oratin (in the background to the left)


"Mom, what's the dinosaur's name?" asked my seven year-old daughter.

I turned my attention to the green plaster dinosaur overlooking the fifteenth hole at the putt-putt.

"Um, hmm, I don't know, baby."

"Mom, what's the dinosaur's name?" she asked again.

(This might be a good time to note that 1. everything and everyone in Brooke's world needs a name and 2. a question will be asked continuously until the 'right' answer is given.)

"I'm not sure, honey."

"Mom, what's the dinosaur's name?"

I know, I know - See number 2. I got it, but I was running on reserves. It was ninety-two degrees in the shade and keeping her on track for the previous fourteen miniature golf holes had taken a LOT of energy. 

"Mom, what's the dinosaur's name?"

I focused on the dinosaur. It was green. Very green. Neon green, in fact.

"OK, little one," I answered, "I think the dinosaur's name is Greeny."

She looked at him, then at me. Then she said something that nearly knocked me off of my feet.

"I disagree."

I ... um ... hmm .. WHAT??

I tried to wipe the smirk off my face.

My daughter - the one whose autism has so dramatically affected her communication - the one whose speech was entirely echolalic for YEARS - the one who had no novel speech AT ALL - the one who relentlessly slogs through countless hours upon hours of speech therapy and social pragmatics sessions - the one who is just starting to consistently identify emotions like happy, sad and scared - THAT child had just told me that she DISAGREED with me.

I could barely contain myself.

"Oh, OK, sweetheart," I mustered, trying to keep my voice even. "So what do YOU think the dinosaur's name is?"



With an exaggerated movement, she nodded her head - eyes up to the sky, then chin to chest, up to the sky then chin to chest again, demonstrating another of her recently acquired skills as she added, "I'm sure of it!"

OK, so that last line was straight from Dora the Explorer in The City of Lost Toys - lilting intonation and all. But let's not split hairs. Besides, she used it perfectly.

Back to the point.

My girl said, "I disagree."

Day after day I watch her slowly work to crack her world open. That day she found the ability not just to access it, but to challenge it. A seismic shift in two words.

Progress is power.

I disagree is freedom.

And she was right, after all. Greeny did him no justice. He is OBVIOUSLY an Oratin. 


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. 


Monday, August 16, 2010

G is for Guilty

When Annie was born 3 years ago, I was still an OBGYN resident in the last year of my training. After 10 short weeks of maternity leave, I had to return to work for 80 hours a week, every week, for 8 months. I was overcome with guilt. There was the I-work-too-much-and-I'm-missing-my-daughter's-infancy guilt. There was my-husband-is-basically-a-single-parent guilt. There was I'm-so-tired-that-even-when-I'm-home-I-can't-spend-quality-time-with-her guilt. I second-guessed my parenting at every step, and I worried that I was doing things that would negatively impact her development, our relationship, you name it. And one day, my best friend said to me, um, welcome to the club. There are never enough hours in the day, or days in the week; even if you spend your every waking minute with your daughter, you will always be able to find a reason to feel guilty. And slowly, as I talked to other moms who had similar experiences, and my daughter grew from a happy, well-adjusted infant to a rambunctious and brilliant toddler, I realized that Annie was doing just fine in spite of my worries. So fine, in fact, that I thought it would be just great to have another baby.

A little over a year ago, my son Lively was born; I was delivered two weeks early because my amniotic fluid volume was low. (I should have been more careful to stay hydrated.) He weighed 5 pounds 15 ounces. (I should have eaten more, and not taken any medications while I was pregnant.) When he was one week old my grandfather died, and we traveled to Kentucky for the funeral. While we were there, Lively got an eye infection and a fever, and he was hospitalized twice, requiring multiple needle pokes, IV antibiotics, and 2 lumbar punctures. (I shouldn't have let so many people handle him and expose him to their germs.)

When Lively was 3 months old, he was diagnosed with torticollis, which is a contraction of one of his neck muscles that limits his movement. His pediatrician sent him for physical therapy. (I should have done tummy time more.) When he was 6 months old, he started having seizures. (I should have noticed something sooner.) He was diagnosed with infantile spasms, and an MRI showed that he had had a stroke, probably around the time of his birth. (What the . . . ?) A blood test showed that he has a genetic mutation that slightly increases his risk for developing blood clots. It doesn't explain why he had the stroke, but is perhaps an underlying risk factor. (Have I passed some horrible genetic condition to him?) He was treated with ACTH, a drug that decreased Lively's seizures dramatically, but that basically caused him to feel absolutely terrible for months and that brought his development to a screeching halt.

For some reason I still don't understand, Lively stopped eating and drinking when he was 9 months old. He was hospitalized for dehydration. After a few days, he aspirated after vomiting, went into respiratory distress, and required urgent intubation and a ventilator to help him breathe. While in the ICU, Lively developed a blood clot in his leg, and required a blood transfusion because of the multiple attempts at acquiring IVs, PICC lines, and central lines. (I never should have let so many junior residents try to place his central line.) After he was extubated, he refused to breastfeed, to take a bottle, or to eat, all things he did with gusto until a few days prior to his hospital admission. (So despite the fact that I am committed to breastfeeding and, as part of my medical practice, help women who are struggling with breastfeeding, I can't breastfeed my baby anymore.)

Lively went home with an NJ tube, a feeding tube that went from his nose to his intestine, into which breast milk was pumped 18 hours a day. When he was 10 months and 2 weeks old, I ran out of frozen breast milk and my milk supply had decreased so much that I had to give him a little formula. (I should have pumped more, remembered to take all my herbal supplements, and banked more milk along the way. In fact, I should be pumping right now.) When he was 11 months old, Lively still refused to eat or drink, and didn't tolerate feeds into his stomach, so his gastroenterologist and surgeon recommended a G-J tube to be inserted through his abdominal wall, running from his stomach to his intestine. (I should have tried harder to get him to eat.) Two days before the scheduled surgery, Lively pulled out his NJ tube, and so I attempted to put in a nasogastric (NG) tube. This is something parents are commonly taught to do at home. When I tried to place it, the tube went into his trachea instead of his esophagus, and caused his lung to completely collapse. (Perhaps I'm not fit to be a mom or a doctor.)

There's more. There's lots more, but I think you probably get the point. I'm a guilty mom by nature, and at times through this adventure, I've felt overcome by those guilty feelings.

But some things help me feel a bit better. Friends responding to my blog, sharing their own similar experiences and reactions makes me feel not so unique (a good thing, in these circumstances)! It has taken awhile, until quite recently, for me to realize that I'm a member of the parent-of-a-special-needs-child club. Reading others' blogs has been a wonderful welcome to the club, and I'm thrilled to contribute my own blog to this extraordinary community. I write about guilt, for my very first Hopeful Parents post, because carrying my guilt has been my entry fee into the club.

When Katie's son Lively was diagnosed with infantile spasms in February 2010 at 6 months old, she and her husband Pete were told, "You have a long road ahead of you." You can read more about her family's journey down that road at Highway Lively.


I have left my HP post until the last minute because all but this last minute have been full.  My tiny girl turned 7 yesterday.  I am tired, but not the same tired I felt the first few birthdays.  Those early ones – 2 and 3, they were tough.  I did not want the year marker to turn, did not want to have to answer the question “How old is she?” with the next number and suffer the pauses, the stifled surprise, the follow up questions related to her not talking, not walking, etcetera.  We all focused on what might be amiss, behind, lacking.  Those early birthdays were deflating.  We had not had her diagnosis yet, so I believe I held on to a delusional hope that each number, whether counting in months or years, could flip the switch that caught her up developmentally. Each of those birthday mornings  I’d wish my girl happiness and get smacked with immediate confirmation that no, this would not be the magic birthday for her, this would not be the year that things would suddenly snap to for my baby girl. And so, after one birthday wish in the early morning, I trudged through the birthday “celebration” wearily.

She is 7 now and things have snapped to (slowly, if things can snap slowly).  For her mother.  We understand her diagnosis now, but more importantly, we understand Addie herself.  She patiently teaches us our roles, helps us pluck out what is important and shed what is not.  She has trounced so many expectations large and small that we have replaced delusional wishes for magic with active belief in possibilities, with practical and productive hope.   We work towards ensuring she has options and then we just sit back and watch, expecting to see her make something cool happen.  She delivers incessantly. 

But I am still exhausted. This time it is the result of nothing more than this being a kid’s birthday – all about her, not at all about me and what I can “handle” about this new age she turned.  She’s 7!  This past weekend she had cake at our block party, a small family party Sunday, she’ll have her friends over for a pool party on Friday and then she’ll have the big family party that combines her own and her sister’s birthday next Saturday.  Planning and executing a virtual birthday festival for my first grader has left me fuzzy and drooping...and also energized by the commonplace simplicity of that fact.

All is as it should be.

More on this big 7 year old at:


Sunday, August 15, 2010

Blogging autism and shattering myths: BlogHer 2010

I spent last weekend in New York City with 2,400 mostly women bloggers at BlogHer 2010, a conference that brings together online writers from all over the world.

I've been to BlogHer before, but this one was special to me because I had the opportunity to speak on a panel titled Blogging Autism: Shattering Myths, Opening Eyes, and Finding Your Tribe.

My co-panelists were a wonderful group of women, each of whom brought something unique to the discussion. Pamela Merritt is an activist who is a co-guardian of her adult autistic brother. Shannon Des Roches Rosa is a powerful and influential voice in the online autism community and mother to a child with autism. Carol Greenburg is an autistic adult as well as the mother of a son with autism.

Each of us shared a myth about autism that we hoped to dispel through our writing. Pamela reminded us that autism is not just a childhood condition. Shannon wants to debunk the idea that autism means misery. Carol brought up the fact that autism and cognitive deficits don't necessarily go hand in hand but that not all people with autism are genius savants either. I see many myths about autism, but the ones that I mentioned were that autism is not life ending and that there are many different ways to be autistic.

Of course I think the words that we spoke and the comments from the audience were important—very much so. Even more important, however, was the powerful experience of sitting in a supportive room with a group of people who care about people with autism and want the best for them. When you're in a room like that, you don't have to explain, you don't have to justify, you don't have to be defensive. You just have to be. And you can be because the other people in the room get it, they really, really get it.

One by one, my co-panelists and I spoke, followed by women from the audience who needed to speak about their experience. They needed to say my kid isn't lucky to have me—I'm lucky to have him. I feel like I picked a four-leaf clover the day my son was born. My child's school counselor told me to stop blogging about my child at school. Am I telling my son's story or my own? If my child grows up able to tell me that I am terrible for writing about her, I will be the happiest mother in the world. What can I do to support the desperate women who email me for help? What about my autistic child's sibling who is scared to have children of his own?

I told parts of my story as well. I told about how I want to write to support other people and that I crave the support I get from the online special needs community myself. I write because my son is going to grow up to be an adult with autism one day and I want the world to be closer to accepting him than it is today. I write to express myself creatively. 

Most of all, however, I write for my children. I write so that one day they can look back and read about what they were like when they were four, five, six years old. I hope that my children, my autistic son in particular, will be able to get some insight from the words that I write today.

It was then that Amalah, a well-known and very talented blogger, stood up to speak. She told about a man with autism who emailed her last mother's day. He wrote to thank her for writing about her son with special needs. He wrote to say that he can't thank his mother and he would not even be able to verbally express himself to her, but that her writing—and that of other mom bloggers—matters. He wrote to say thank you. Thank you for writing for your son.

Through teary eyes, I watched as sobs began to spread through the room—as validation came to all of us through an anonymous letter to one of us.

There were many powerful words spoken in that room last weekend. Each of us responded to a different anecdote, a different bit of advice, a different myth that was being shattered, but we did it together in an atmosphere of support, and that feeling will stay with me for a long time.

Jean parents three children, one of whom has an autism diagnosis. She blogs at Stimeyland, runs an autism events website at AutMont, and can be found on Twitter as @Stimey. You can read the liveblog for the Blogging Autism panel on the BlogHer website.

Saturday, August 14, 2010

Click, click...it's me!

Hi there, I’m Sharon.  Yep, Sharon.  Right now I’m choosing not to answer to Mom, Hon, Mama, Woof, Meow or the other names I am referred to at varying decibels depending on specific need in our house.  At this very moment, I’m just me.  Glad to meet you.


I have to laugh at the way I came to be here, typing away on a computer screen reaching out to others like me who wouldn’t know me if we passed on the street.  Oh, you might recognize a kindred sister spirit as you see me dealing with the rigors of being a mom to children with special needs.  I’m the one who looks exhausted in the checkout line since one little “angel” (insert sarcasm here) didn’t get enough sleep last night.  I’m that woman who is pointing to cows out of her vehicle window to distract the screeching child in the back.  I’m that Mom who isn’t at the ball games because she is allowing Dad sometime with his older son since the youngest couldn’t deal with the sensory overload—let alone screech because he couldn’t join “Bubby” on the field.  I’m that Mom who wishes, just once, I didn’t have to juggle my insurance card, the appointment visit sheet, and her datebook at the reception desk all the while trying to wrangle the aforementioned angel who exceeded his patience level with the doctor.  (I really hate feeling like a circus performer juggling way too many balls on that one.)   I’m also that Mom in church who alternates between standing at the back of church trying to keep one child entertained or sitting in the pew making exaggerated facial expressions to “remind” the older child to stay engaged during the mass.  I could go on with my descriptions; but like I said…you already know me.  The reflections may be different in the respective mirrors…but we would be able to “recognize” each other anyway.


When an email about Hopeful Parents came from a colleague at work, the timing was painfully poignant.  I was having one of those days we all experience when I was really tired of being THE Mom in my world.  I was feeling lost among the daily schools logs, calls to the doctor about changing doses or confirming appointments, paperwork for the upcoming school year (it’s still summer for goodness sakes!), scheduling CSE meetings, routine changes, summer restlessness, dog barking, cats hissing, one child whining about this, the other child screeching for that, laundry piling up, my Mom leaving a guilt-laden voice mail about not having heard from me in awhile, having to remember to refill several prescriptions, planning for a summer vacation (Am I crazy?!), waiting for the van to be finished at the garage, desperately trying some music therapy as a distraction and half a dozen others things my frazzled mind can’t recall just as Dad wanders in the kitchen wondering what’s for dinner.  AARGH!!!  These are the times when I feel I’m no longer me…just some overworked, underappreciated facilitator for all that transpires from alarm clock—or youngest son jumping on me in bed—to the time my head crashes into the pillow at night.  So, the notice that this site was looking for parents willing to share their perspective and offer a grassroots form of support was like someone handing me a temporary escape if you will.  It’s a chance to reconnect with the often forgotten inner persona while typing away on the keyboard.


I am familiar—far too familiar—with the need for support when you are raising children with special needs.  Being a parent requires support period; being a parent of children with special needs requires truckloads.  And if it takes a village to raise a child, I’d like to know where that village disappears to when there really is a need.  Oh sure, there is a village there at times…it’s just a more bureaucratic and formalized village most of the time.  And while the help is there, it can leave us feeling a bit lost and glassy-eyed as we wander down the formal streets from one place to another.  Sometimes, we just want a more emotional connection—a chance to feel more human than robotic.  Or at least give you a chance to feel somewhat warmer than the tepid coffee left sitting on the counter.


Support should help you stand taller.  Support should feel like a really good cup of sugar-free hazelnut cappuccino with cocoa shavings (my particular favorite).  It should warm you inside, give you that jolt you need to keep going, appeal to your inner “well-being” (I consider coffee an necessity…don’t you?), and make you realize there is absolutely no reason to feel guilty about reaching out for support.  (Hence the sugar-free part.)  Too many people think that they need to go it alone, or no one understands so they quit looking, or they are somehow less of a parent if they admit that there are some days that can drive you to your knees.  No, my friends, support is as vital as breathing and as nourishing for the soul.  We all need that reminder to replenish the supply from time to time.   Thanks for the reminder.


So, thanks for providing me with some support by allowing me the “indulgence” of being Sharon for a short while.  It’s nice to have “someone out there” who will listen to me—especially when it feels the ones downstairs aren’t giving me that courtesy.  And even if you never pass me on the street or recognize me in the grocery store, know I appreciate the support.  Ok, deep breath and pass the sugar-free hazelnut cappuccino …I’m going back in. 

iThank You.

 I accidentally ‘watered’ my iPhone last week. It was tragic. After I pulled it out of the [body of water redacted due to the author’s vanity], I furiously dried it, turned it off, placed it in a baggie full of rice and held vigil for 24 hours. I did a little tribal healing iDance over it, maybe said a few iPrayers.

After a period of drying (and severe iWithdrawals), I turned it back on. Worked beautifully. I called my home phone and talked to myself for a minute to make sure the speakers worked, and all was right with the world. I hit the home button to try another app. NOTHING. I hit it again. NOTHING. The home button, for the non-iPhone world, exits one out of an app or feature to bring one back to the menu. It was dunzo. Elation turned back to grief.

I made an appointment at the Apple store, in hopes that maybe, somehow, I could get it replaced without having the shell out for another one. To my eyes, the water sensor in the earbud jack was still white. There was hope.

The appointment was set, and The Kid insisted on coming with me. When we arrived, I plopped him in front of an iPad and went to the genius bar in the back.

And well, there was total, obvious water damage. They were sorry, but they couldn't do anything. I could give them $200 to replace the phone and it wouldn't reset my contract with stupid AT&T nor would it push out my date that I'm ready for upgrades, etc.

Now, I had anticipated this. I get a great discount on hardware at AT&T through my work, and buying a new (non) iPhone was my plan B. So, I tell the iTechieAppleStoreGuy thanks, but I’ll just have to get a new phone at AT&T, since it will be cheaper.

So, I turn toward my son, deep in concentration over the iPad. I come to realize that he’s quite possibly stuck to the iPad. It's like the greatest thing ever. He's never seen one in person before.

”Let’s go, Kid, we’ve got another store to go to.”

“One more time!” he requests, referring to the level in the game he’s found.  

The request for one more time turns into frantic begging for five more minutes. Five more minutes turns into crying and pleading for an iPad of his very own. You know, the whole process of the explosive, progressing, toddler-style tantrum coming out of a 10-year old. I hold my ground, and we amazingly avoid the full iMeltdown. He understands that we are not buying an iPad and we walk out of the store. This takes 20 minutes, and I feel that familiar burn of judgmental eyes on the back of my head.

We are outside of the iStore and then in the window there is an iPad and it has a game on it that he LOVES to play (Plants vs. Zombies). He asks to go back. I say no, we're going upstairs to AT&T. Like, less than 100 yards. Suddenly his legs no longer work, he's tired, he’s stricken with paralysis, unless he can play Plants vs. Zombies, how can I expect this child to continue living? It’s like, MOTHER, YOU ARE SO CRUEL! I MUST. PLAY.

So, it’s been a stressful few minutes. One of the beauties of parenting The Kid at 10 years old vs. pretty much every age prior to this is that I finally have him up to speed on what’s completely unacceptable. We’ve already been through a 20 minute power struggle, and I can finally exercise the “don’t F with MOM” look that we all grew up with (and instinctively understood at 2, but for my delayed genius of a son, it took an extra 8 years to sink in). I glare and say, “UPSTAIRS. NOW.” He iComplies.


I get him up the escalator and into the AT&T store. I am asking the AT&T dudes about what it would cost me to replace my phone at this point... I'd have to pay full price. I begin the whole,’ but I have a corporate discount’ fight that gets me nowhere (and I later find out the discount only applies online).

During this fight, The Kid interrupts me to tell me about Plants vs. Zombies 8 times. He corners another poor AT&T employee to tell HIM all about Plants vs. Zombies. The Kid starts picking up phones on the wall, while talking about plants vs. zombies, semi-illustratively, to enhance his describing of Plants vs. Zombies. Like all mobile phone stores, the phones at AT&T are all attached to the wall with spring loaded wires. The Kid maneuvers so that he practically pulls the phone off the wall, lets go of it, exemplary, no doubt, of how a plant shoots a zombie, and it hits the wall in two places before springing back to his docket on the wall. This does not interrupt his lecture on the relative merits of explodey cherry things over the green horn-shaped shooting plants.  

AT&T guy, who is refusing to believe I have a corporate discount looks at The Kid in reaction to this, turns back to me with a “Don’t F with AT&T Dude” look, more scathing than any I can level as mom, and I collect The Kid and we leave in disgrace. Well, I do. The Kid’s all, “The walnuts are best placed on the OUTSIDE of the lawn, so as to trap the zombies behind them.”

We're outside the AT&T store. I'm miserable. I can't tell you how sad my 48 hours without my iPhone was. How pathetic is that? Then The Kid's totally still talking about Plants vs. Zombies. As much as I like to tell myself I'm a smart consumer, I'm not. I cave. I'll shell out the $200. This is humiliating, from all sides.

I go back to the iStore or whatever, and am greeted by a nice looking guy who asks me if he can help me. I'm practically in tears, which means, NOT EVEN PRACTICALLY, I'm in tears. I tell him that I'm there to bend over and replace my water damaged iphone.

He says, "bend over?" And I explain that I was just in there and was told it was toast, went up to an utterly not helpful AT&T store, and now I'm back to blindly give money to Apple again after only owning an iPhone for 11 months, to replace it, even though it's stupidly easy to destroy them.

He ushers me back to the genius bar, gives me to a kindly hipster girl, who starts to help me get a new iPhone.

Need I say that the second we crossed the iThreshold that The Kid found an iPad with Plants vs. Zombies and was blissfully stimming away? Yeah, it’s pretty much a given at this point.

So I sit down at the bar, holding back tears, because it had been a really stressful 30 minutes, and she looks at me and says, listen. I'll meet you half way. We'll replace it for $100.

My tears were not even about Apple at that point. It was the "I can't go anywhere with this kid" but quickly assessed and told her how frustrated I was because I thought I was coming to get my phone fixed and here I am shelling out MORE money. Whatever, it worked. And maybe I did deserve a discount off of my apparently drenched iPhone. A friend of mine named this the Super Secret Autism discount.

Anyway, that's my iStory, and I’m iSticking to it.