Thursday, December 31, 2009


A couple of days ago, one of the posts that was written generated a lot of heated argument about the origin of Autism. I turned-off comments on that post because people were telling other people to "fuck" themselves.

If those of you involved would like to continue the conversation off-line, I will be happy to provide you with each other's e-mail addresses. But please refrain from that kind of aggressive name-calling here.

The Norman Rockwell Moments

We're almost out of the "Holiday Season" woods for 2009. Just one more day...

How did you fare?

My family celebrates Christmas, and during our visit to see my in-laws in Minnesota, my mother-and-law and I had this really enlightening conversation about Norman Rockwell.

Before I get to that, a little background: my mother-in-law is a Ph.D. art therapist for children and adolescents. As luck would have it, she is well-versed in the issues that affect my son: anxiety, ADHD, PDD-NOS. Consequently my in-laws, and mother-in-law in particular, are not only sensitive to my son's needs when we visit, they're educated and extraordinarily helpful as well.

As I mentioned, my mother-in-law is an art therapist. She loves visual arts and her house exudes it. Full of color, photos, books discussing art, coffee table books full of pictures and photographs, and original art that she and her grandkids have made together. There is a wonderfully comfortable, relaxing, messy (did I mention she's an artist?) and familial feel to her home tucked into the woods next to the Rum River.

All this to say that of anyone in my close, personal circle of friends, my mother-in-law is the foremost authority not only on art but on psychology and interpersonal relationships.

At some point during our visit, my son was off his meds and racing their six-month old poodle puppy around the living room and kitchen, which included not only the enormous obstacle of the Christmas tree and all the packages beneath it, but also a carved wooden antelope that my in-laws had purchased on one of their trips to South Africa, the dog's food and water bowls, a small stool, and a floor carpeted in one location with all manner of legos.

And while this raucous puppy chase was happening, my mother-in-law was simultaneously opening the oven door, my father-in-law was trying (and failing miserably) at getting the puppy and the child to calm down, and the television in the kitchen was on full blast (either my in-laws have yet to admit that they're getting a little hard of hearing or they were trying to drown out the staccato pants straddling both anxious fear and pure joy that my son was emitting as he blasted through the house).

For a moment, there was nothing I could do but stand there and watch. My mother-in-law noticed me and came to my side. "Definitely not the Christmas Norman Rockwell painted," I said to her.

"True," she said. "But does anybody ever have the Christmas Norman Rockwell painted?"

Surely someone does, I thought. Surely many people do. Surely, almost everyone does but our family, laden with all the issues a severely hyper, anxious, sensory-seeking child brings to our proverbial table.

"I mean, he painted an ideal," she said. "A moment in time that maybe some of us only witness once or twice."

And then the dog ran round; then the child, shrieking with delight; then the grandfather demanding in his booming, preacher voice (did I mention he's a preacher?) that everyone "SLOOOOOOOOOOOW DOWN!"

Which was when I realized this was our "Norman Rockwell" moment. The running, the chasing, the pull of hyperactivity dragging the insistence of "calming down" to its knees, the hot oven open for the tripping and potentially the burning, the mess in the house, the now tipped-over bowl of water sloshed about the floor that beckoned both child and beast to run and slip on it -- the stuff of life, lived.

There's a guy named James Lehman who said, "Don't compare the inside of your family with the outside of someone else's." Well put and easy to grasp. Sometimes hard to do. But if and when you get there, maybe a time will come that those messy moments of life become the ones you romanticize the most:

Wednesday, December 30, 2009

Go Get 'Em

I don’t know where the notions of what is and what isn’t possible come from. I don’t know why we, as a society, need such notions. What role do they serve? What good do they do?

All of us can think back to someone who told us not to get our hopes up, not to count on this or that. Be careful. Make a different plan, something to fall back on. When I told my mom I wanted to be an actress on Broadway, she winced and said, “Welllllllll.... Honey, listen: That’s going to be very very hard!”

She thought she was protecting me from hurt and disappointment. She meant well. It is hard to be an actress of Broadway. But it’s harder if you never try, if you give up before you find out how you fare.

The tricky thing is, most people don’t know they’re giving up. The black type of your parent’s (or teacher’s or sibling’s) words drift into your conscious brain and as you dismiss them with confidence or annoyance or irritation, an invisible cloud of doubt sinks into your unconscious where it begins to infect your dreaming heart.

As I waxed on passionately about theater and movies, my mother talked about being realistic, my little brother tried to flush the cat down the toilet, my sister lost her virginity in the bushes and my silent dad watched TV. On the outside, I pursued my dream. I graduated from prestigious acting conservatory and moved to New York to audition, to act! But the cloud of doubt was running the show during those years in that throbbing metropolis so instead of auditioning and acting, I slung hash, cavorted with the wisecracking waitstaff and slept with brooding, intense, emotionally puerile men.

Parents want to keep their kids safe. Not getting what you want feels bad and they don’t want their kids to feel bad. But not believing in what we want or love or yearn for doesn’t keep us safe; it keeps us scared. Like them. 

The funny thing is, getting our hopes up, dreaming big, bigger than we might at first dare to dream, creates a feeling of safety, of trust, of ground. Inside. It doesn’t matter if what we try doesn’t work right away or even ever because when we operate from that place of belief, we take our ground with us. We’re okay with wherever we land. The outcome neither defines us nor invalidates the dream. We look around and make a new plan, taking our belief with us.

When we operate out of that place of fear, we are groundless so even if we happen to stumble upon what we wanted all along, deep inside, we feel shaky, undeserving, somehow not convinced it’s good or right or enough.

The movie, The Secret, was a turning point for me. Okay, it was flawed, yes yes, but it cracked something open in me and inside was the flesh of new beginnings. It all boiled down to putting my energy toward what I want more of rather than what I don’t want. It’s the power of intention, the simple phrase: Ask. Believe. Receive.

Ask: What do I want? This is such a powerful question. Not, what can I have? Not, what’s realistic? Not, what does everyone else want for me. No. What do I want?

Believe: Am I willing to believe I can have it, this thing I long for?

And if not, am I willing to let go of whatever stands in the way? long enough to allow the vision of that wonderful thing to seep through a pin hole? Because that’s all I need, a pin hole in the dark sky of my It Can Never Be and whoosh, it will rush through and bloom. Remember: our brains can’t tell the different between what’s real and what we imagine might or might not happen so why not feed it something that truly juices us up?

Receive: Is there anything that stands in the way of me allowing that into my life? I don’t have to analyze what stands in the way. This is important! I don’t have to examine old, unhelpful (even destructive) tracks. I can simply lay down new tracks right now.

How does one lay down new tracks? For me, it’s been by practicing this creative way of being in the world, this Asking, Believing, Receiving that comes from a belief not in what is or what has been but in what is yet to be. True not knowing creates openings and possibilities.

Martha Graham said, “Practice means to perform, over and over again, in the face of all obstacles, some act of vision, of faith, of desire. And in so doing, one becomes an athlete of God.”

I like that. An athlete of God.

I was looked at my Vision Board this morning and realized nearly every part of it has come true. It’s time to make a new one, to gather magazines and tear out every single image and phrase that makes me feel peaceful, excited, inspired.

One of them is going to be Fluffy smack in the middle of a group of happy, engaged kids.

One of them is going to be a sexy, laughing couple alone on a gorgeous beach.

One of them is going to be my memoir in the New York Times best-seller list.  

One of them is going to be the most fantastically fit and vibrantly radiant woman in the prime of her life.

One of them is going to be me on stage, performing my solo show.

Because, who says it's too late for me to be on that stage? or what 50 ought to look like? or what education is required to do what job? or what Asperger’s has to mean for my family or my son?

Who says which dreams are okay to have and which aren’t?

And who says what 2010 will bring?

Well, in a way, you do. 

Happy New Year.

Go get ‘em.


Tuesday, December 29, 2009

Special Needs Kids Aren't "Broken"

A few years ago, I saw a parent use the word "broken" to describe their special needs child. It was the first time I'd heard the term used that way and my reaction was strong. My ass was decidedly chapped. At the time I was writing a lot about vaccines. Railing against the government, big pharma, clueless dentists filling little teeth with mercury laden fillings. Even still, something about the term "broken" used in reference to a child, rubbed me the wrong way. "Hey kid, you're damaged goods," it seemed to say. What a horrible message to send.
Annoyingly, I had just enough self-awareness to know perception is a mirror, and if something another person said bothered me that much, I'd better look in my own yard before attempting to clean up theirs. It forced me to delve deeply into how I was viewing my own child who is diagnosed with Asperger's. It caused me to face my own victim mentality,the one I'd been steeped in since childhood. The one I had dragged with me into parenthood. Today, I'm appreciative for having had the opportunity to clean that up.  
I still believe environmental factors (especially vaccines) cause autism in genetically susceptible kids. What I also believe now, that I didn't before, is children with autism and other disabilities are more, not less. Their lives are meaningful. They may not be able to do all the things "typical" people do, but on another level they are doing much more than they might have done, had they not been born (or thrust) into these conditions. They are not second class versions of their "real" or better selves. They are powerful souls. They are here in droves, changing the world as we know it. One family at a time. One interaction at a time. One heart searching moment at a time. They are teachers of unconditional love, requiring us to accept them, or be miserable. They shine lights on unhealed parts of us, and forgive us over and over as we fumble through, trying to parent them well.   
We continue to provide therapies and supplements in an effort to help our child meet her needs and be the healthiest she can be. We will always do what we can to help her, but we're no longer trying to fix her. 
None of us has the whole picture yet. 
The term "broken" continues to float around a bit in special needs circles. It peaks my curiosity, but no longer stings.
At best it is an attempt at conveying the struggle and challenges a special needs child faces. In no way do I dismiss those challenges. Our family faces plenty of challenges, but some children and parents deal with more than I can ever imagine and I mean no disrespect. At worst, however, the use of the term "broken" in reference to a child with special needs is a publicity stunt aimed toward offending.
Somewhere in the middle is the argument, "That's how the world sees them. That's what we're dealing with." 
Nope. Still not buying it. 
"Broken" does not describe my kid.
Forgive me, but I will never see your child as damaged goods either.  



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 her blogs about her daughter's service dog have recently appeared on The She writes about family, spirituality, Asperger's, service dogs, and the law of attraction at


Monday, December 28, 2009

The best gift of all? Acceptance.

As the holiday season approached, I noted that a number of blog posts by special-needs parents focused on their anxieties about upcoming family gatherings. They didn't have garden-variety plaints -- "God I hope Uncle Ed doesn't drink too much again" or "If Grandma nags me about my weight, I'm gonna lose it". In blog after blog, I read about moms and dads girding their loins in preparation for the volleys of criticism that were about to be hurled at them about their parenting. I read about parents sending pre-emptive emails to relatives, and printing out fact sheets on their children's disabilities, hoping that they could get their families to understand why family gatherings are so difficult for their kids. Their angst was heartbreaking.

I'm lucky. My family has taken great pains to understand and accommodate my sons' autistic spectrum disorders and mental health challenges. At a recent holiday gathering, my son Taz (who has frontal lobe damage from seizures that renders him nearly devoid of impulse control) became anxious and began blurting out grotesque, completely inappropriate statements that totally mortified me. I began to apologize for his behavior when my mom held up her hand. "Don't worry," she said. "We know who Taz is. We know there's beauty in him. We get it." It took all the pressure off, and Taz eventually relaxed when he felt the embrace of my family's acceptance.

Even my wusband's family has become more tolerant over the years, something I never expected to happen. He took the boys to his sister's house on Christmas Day, and my older son Rocky didn't even say hello before going over to her TV and reconfiguring it for optimal video output (one of his autistic obsessions). The wusband cringed in embarrassment and angrily prompted Rocky to perform the expected social niceties. That's when my ex-sister-in-law, who has lectured us relentlessly about how remiss we are in teaching our sons proper manners, apologized to her brother, saying, "I'm sorry I didn't get it before. That's his autism, right?"

If your family doesn't support you now, take heart in knowing that there are people like my ex-sister-in-law who eventually "get it". And even if this never happens, know that there is a lot of support out there for you -- from friends, neighbors, and, of course, from all the Hopeful Parents in the blogosphere. 

May 2010 bring you all the loving acceptance you need and deserve.

Sunday, December 27, 2009

A new year, a fresh decade, a clean slate

Time Magazine called it "The Decade From Hell." I'm inclined to agree. They cited a decade that began with the fears of Y2K and is ending with an economy struggling for air. My decade seems to have mirrored the ups and downs the magazine mentions.

I started the decade with a miscarriage, right at the end of the first trimester, when I thought I was home free. I did not handle this well. I'm ending the decade with a strongly intense son, and the breathtaking fear that we are making the worst possible decisions for him.

So I have decided that as of Friday, it's a clean slate. Fresh. It's not enough to erase the old one, it's time to go out and get a brand new one. With no marks from previous years, I can look at each possibility and opportunity and decide which one is best for me, for our son, and for our family.

We've pulled our son off of his ADHD meds. We weren't seeing enough of a difference in focus, and suspected some of his emotional outbursts and hysterics may have been related. His school is not helping us; because his giftedness and disabilities mask each other, he doesn't qualify for an IEP and apparently he hasn't failed enough for RTI.

Fresh slate. No meds and no plans for meds. A new therapist who specializes in gifted kids and families.  Possibly a new school (and probably back to work for me, to cover the likely tuition). New hopes, new plans, new possibilities for the future. As frightening as it is, it's also an exciting time. We get to decide what marks are made on that new slate, and if those marks are worth it. A decade ago, we were sobbing over a lost pregancy and fearful that we'd never have a family. Today we are worried about our son, but hopeful for the future. A decade from now, who knows.

I'm just thrilled to have the clean, unmarked slate ready for Friday.


Jen can be found at Laughing At Chaos.

Saturday, December 26, 2009

Lessons Learned From Special Needs Parenting 101

We received our diagnosis in July of this past year, so as we close out 2009, I wanted to reflect a little on the experience of being a newbie to the world of special child parenting.

The first thing that struck me when we were told that Noel has Asperger’s, is that I really, really wanted to blame someone. I wanted an explanation, a reason for the way he was. I needed a clear cause, and I quickly learned that opinions vary. But the other thing that became quickly clear – if there was blame to be laid, it was probably going to be laid on me.

We are hard on mothers, this society. At the best of times we want them to be great, and at the worst of times, we expect them to be nothing less than superheroes. And we blame them. For everything. Is the house untidy? Mom is falling down on the job. Are the kids in daycare? What a selfish mother, putting her career ahead of her kids. Is there something ‘wrong’ with her child? Well obviously, she smoked/drank/ate sushi/vaccinated/looked at him cross-eyed when he was born. It is all her fault.  

Letting go of the need for a reason also allowed me to let go of the blame that was being placed on me, by external and internal forces.

The second thing that I’ve wrestled with is the politics of all of this. There are, of course, government agencies who will give you support only if you meet their specific, and sometimes frustratingly unclear, requirements. There are buzzwords, and politically correct words, and the wrong words.

Every time I sit down to write a blog post, and to reflect on any aspect of this life, I find myself worrying about offending someone. If I say that I want people to accept Noel for who he is, with Asperger’s, does that mean I am putting the disability before the child? If I say that I wish he never, ever had this disorder, does that hurt the people with Asperger’s who feel they are enriched by their differences? (In reality , these worries are particularly silly because I have maybe 10 regular readers.)  

But when I stop worrying about offending someone, I find that I can write about these feelings and it actually helps. I can speak up at a support meeting and maybe find others who are seeing things in the same light that I am. And I can learn, from others, their ways of looking at these struggles that we are all facing.

Finally, I have discovered the amazing wealth of support there is to be had online. While sometimes, I find that our real life sources of aid are lacking, I feel a certain comfort in the fact that I can always sit down with my computer, and immediately find someone who has felt these same stages of grief, who has been frustrated, or angry, or embarrassed in public. People who understand why we don’t just ‘teach that kid some manners’, or ‘tell him not to do that’. It truly is invaluable to find someone who is going through what you are going through, and so I keep writing, and I hope that everyone else keeps writing, too. Whenever you feel like you aren't being heard, remember that your words are making a difference for someone. And your voice is the voice that is speaking up for your child. And you are being heard.


Find me on all other days of the month at Robot Tea

Thursday, December 24, 2009

Holiday Wishes

Well, here we are, everybody.  If you celebrate Christmas, you know that today is Christmas Eve and tonight brings the arrival of Santa for boys and girls everywhere.  We've been across the state for the last few days, visiting family and friends, but this afternoon have driven home.  We'll go back there on the 26th, but these next couple of days are all ours in our own little home. 

During the 3 hour drive today, both boys fell asleep.  I was driving, and feeling pretty drowsy myself.  In the rearview mirror, I could see their faces and how beautiful and peaceful they looked.  At that moment, there were no meltdowns, no sensory overload.  No typical sibling squabbles, and no autism-inspired rigidity or obsessions.  No out-of-control ADHD moments that look ever so much like manic episodes, and no awkward social moments when the "uniqueness" of my boys keeps them from making or keeping friends.  Nothing but the angelic faces of little boys utterly at peace, and all's right with the least for an hour. 

We drove into the neighborhood, and they woke up, and it's back to reality.  The house is in such a miserable state of clutter and mess that I just want to cry, and tonight I get to use every weapon in my parenting arsenal to somehow manage both boys through TWO church services after they just rode three hours in the car today.  Hubby and I didn't get presents for each other this's just easier to put that money towards something else (can you say "therapy bills", boys and girls?  I knew you could!), but I think that today's glimpse of my sleeping, contented boys was all the present I needed. 

Merry Christmas, everyone!  I hope that you and yours have a wonderful holiday season, and a blessed and happy 2010.  Thanks for allowing me to share a bit of our story with you each month here at Hopeful Parents--I'm honored to be a part of this community!