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!

Thursday, February 5, 2009

The Total Transformation by James Lehman, Product Review

If you're struggling to keep your child "in line" -- at home, in public, with siblings and peers, with you -- then the Total Transformation Program may help.

I've been using the parenting techniques offered in this behavioral program with my son (ADHD, PDD-NOS, anxiety that can lead to psychosis, SPD). It has made me a more confident parent, and able to contain the situation when my son has a meltdown.

The Total Transformation Program isn't a quick fix or a cure -- but if you're at this site, you're an experienced parent of a special needs kid so you probably already know this.

The company promotes that the Total Transformation Program can help kids diagnosed with ADHD, bipolar disorder, conduct disorder, ODD -- the whole lot. I'd agree and throw in RAD in my non-professional opinion.

It gives kids like these -- kids who can be stubborn, defiant, and abusive; kids who've been through the foster care system, kids who haven't had a steady home life -- firm boundaries in no uncertain terms.

The Total Transformation Program includes a "Jump Start DVD" that acclimates you to the program, introduces you to its creator James Lehman, and gets you excited about the prospect of having a child equipped to meet behavioral expectations at home, school and in public.

After you watch the DVD, there are several audio lessons to hear and corresponding workbook exercises to accomplish between lessons. I've found these audio lessons to be enormously helpful. I happen to spend a lot of time in the car, and listened to them during drive time.

In fact, I still listen to them during drive time. The audio lessons are so full of information and my son is ever growing and changing, that even though I've heard them a hundred times, I'm always finding something new to work on. James Lehman rocks.

James Lehman admittedly has ADHD. He was a kid who bounced around in foster care before he ultimately ended up with his adoptive parents. He didn't live a fairy tale life, and actually ended up in jail for a while. And then he turned his life around.

If I recall the story right, it was while he was incarcerated that he became interested in understanding behaviors associated with ADHD and other disorders. When he got out, he worked his way through the educational system and earned his Master's in social work. He's been counseling kids like him every since.

What's nice is that he has the perspective of knowing what it's like to have a disorder that doesn't make conforming easy. What's nice is he also is the father of a child with ADHD, so he knows what it's like to parent a kid with those behaviors too.

The Total Transformation Program is a behavioral therapy program.

In short, it trains you -- the parent -- in behavior therapy. It gives you the tools and techniques you'll need to work with a child who consistently defies rules and runs against the social grain. It can help your child -- from as young as three or four (you'll have to scale down some concepts) to your adult children -- the ability to understand that limits and rules you set are binding.

For me, the Total Transformation Program has given me enormous confidence. When you have a kid screaming in your face, damaging your property, throwing projectiles right and left, hitting, kicking, biting -- when you have a child that has relentless anger and energy in expressing that anger -- it can be extraordinarily difficult to contain the situation.

Thanks to the Total Transformation Program, when that happens in my house, I'm able to maintain my control and my cool.

And please notice what I just said: "when that happens in my house." I've been using techniques in the Total Transformation Program for a couple of years, and the incidents continue to occur. This program does not fix your child; it will not cure your child; your child will not magically wake up without a disorder. But it will give you the tools and the unwavering ability to rise above and direct the situation.

Prior to purchasing the Total Transformation Program, I had a library of books -- 1-2-3 Magic; The Explosive Child; Raising the Spirited Child; The Out-of-Sync Child; The Baffled Parents Guide to Stopping Bad Behavior; Parenting Guide to Positive Discipline; and, among many others, (my all-time favorite title) Parents, Please Don't Sit on Your Kids.

I have had no interest in turning back to the pages of these books for help, and I have had no interest in purchasing another book or resource dedicated to discipline or behavior. All the answers I need to help me with my son I've found in the Total Transformation Program. It is that thorough, that good.

Long story short, if you're on the fence about purchasing the program I say go for it. It's worth every penny. The program isn't cheap, but think of it this way -- it's the price of a couple of behavior therapy sessions, you can spread the payments out over time, you'll seriously never need to buy another book or resource again, it's an investment in your child and your own sense of peace.

Wednesday, February 4, 2009

My Two Faces of Autism

There are a lot of bloggers and parents of autistic children who look to celebrate their autistic children -- everyday, and want to open up to the world to show how wonderful their kids are, and to choose to look at the gifts that they offer instead of the disorder that they're burdened with. These parents want to offer their voice to speak in support of autism -- the fight for its existence, acceptance and its sustainability.

I understand this attitude and this activism. And, personally, I do embrace autism and all of its pretty colors -- to a point. I embrace Nick and his disorder and want the world to know just how special he is because I believe he is special and great -- just like you believe that your child is great. So, I'm here to say that I'm standing right there beside you -- like-minded parents who want to promote autism as a positive and stop judging it as a negative for the sake of our high functioning autistic kids and their place in the world.

So, I can say that I get it, I do. They are our little gifts in life more precious than most and who hold a very warm spot in our heart and the hearts of others who have the privilege and open-mindedness to know and embrace them.

However, I also represent, respect, and understand the other side of autism that we call hell -- for those of you who understand what hell is, because not all of you do. Whether you like to hear it or not, there is this side to the disorder and it's often hidden from the world. It's a sadder, scarier, exhausting and, frankly, horrific side to this disorder that you know as severe or low functioning. It's a perplexity that I'm still trying to wrap my brain around and understand, even after 13 years. It's autism at its worst and I'm not choosing to celebrate it. Not a chance. It's a side that few people actually get to know, understand, or accept because they give up before they can even try and have to institutionalize their child at the tender age of 5. It's autism at is worst -- an evil, hell, devastating, and heartbreaking. And don't tell me to stop and look on the bright side or be positive, because there is no brighter side to this side of autism -- trust me, I've spent time looking, begging and pleading that there would be a brighter side -- at some point, someday; because how can a parent allow herself to feel this way?

A severely autistic child, like Meghan, is not a child like Nick with higher functioning autism and one you can mainstream into classrooms, and show off in public places without worry or incident. She is not a child that you can trust to play in the yard without running off, to trust with a toy without breaking it, or to trust to use the bathroom without playing with her feces -- even at 13. She is not a child who you can talk to and have a conversation with or to get to know her precious little thoughts and secrets. After 13 years I still don't know what Meghan's favorite color is because she doesn't understand the question. Children like Meghan cannot connect, speak or relate easily to you or to me -- her mother -- or to even speak those precious few words that we all wish to hear: "I love you Mommy," or even "Mommy" would suffice; I'm still waiting, I'm still waiting to hear her voice. It's autism at its worst and I know it just as well as I know autism at its best.

Harsh? Maybe, but it's true. But I also want to say that it's okay, too. It's okay to feel this way. It's okay not to pretend that everything is okay when it's not. To allow yourself those fleeting moments to feel hostility instead of happiness; to feel dread instead of hope; to want to condemn autism instead of celebrating it, because it's real, and it's raw and it's hard. And it's hidden from the world because, frankly, people want to see the hopeful side of autism -- the prettier side -- the acceptable side -- the side that we want to show off, celebrate and promote with all our hearts because it makes us feel better.


By Holly Nappi Collins, who blogs at Fearless Females. This post is reprinted at Hopeful Parents with her permission.

Tuesday, February 3, 2009


It’s when we’re at home that my son, Taz, has problems. If he is not continually and directly engaged by an adult (or a television if we’re too exhausted), he starts bumping into walls, crashing into and climbing on furniture, doing headstands on the couch, running, tripping, yelling, and throwing things.


On the other hand, if we go on a three hour hike in the wilderness, he is calm and focused the whole time. He can balance on stepping stones to cross a stream without getting wet. He thinks of games to play in the dirt, and can play them for multiple minutes.


It’s when we’re at home that I have problems, too. If there’s a child who is bumping, crashing, climbing, headstanding, running, tripping, yelling, and throwing - I lose it. I need a certain sense of order, at least a little bit. I need the people around me to not be continually injuring themselves. I need occasional moments of peace and quiet.


Sometimes I fantasize about living in the wilderness, like where we hike, or maybe on a ranch. I could open the back door and nudge Taz outside anytime he started bouncing off the walls. He could wander and explore, and I could watch him from the kitchen window. All his needs (and mine) would easily be met if we lived on a ranch.


In the real world, parenting Taz is extremely hard, but I don’t know if he really has special needs. From the time he was born I suspected something was different about him. He was absolutely active alert (as described by Linda S. Budd) - he did the commando crawl after we brought him home from the NICU when he was only a week old. He was most definitely high need (as described by Dr. Sears) – he wouldn’t (and still doesn’t) tolerate being left alone even briefly. He was extremely needy, yes, but he was not... disabled. Sure, he almost never slept and was constantly injuring himself, but according to the milestone charts and the pediatrician’s evaluation he was developmentally on track.


So why was it so amazingly difficult to parent him? Why was he so unhappy? Why was I feeling like such a failure?


I tried every method in every parenting book for creating stability in our family, and yet, nothing was working. Our lives continued to feel upside-down, as they had since the moment of Taz’s birth.


I began to look inward. The other moms I knew did not seem to be struggling the way I was, and no one else seemed to think anything was unusual about my son, or if they did, they didn’t say so. Maybe it was me who had the special needs. Maybe I was the one who was disabled. Maybe I did not have the skills to be a parent at all.


I researched obsessively. I alternated between trying to find other children who sounded like my son and trying to find other parents who shared my feelings of incompetence. I considered my history. I thought about my own difficulties growing up.


One day as I was researching I stumbled upon some information about Asperger’s Syndrome. I considered the possibility that Taz had Asperger’s only briefly because, well, he was three. I figured that three year olds are generally pretty weird when compared to people with fully formed brains, and how could I really know how much was abnormal and how much was just three?


I decided not to pursue a diagnosis for him, but realized that the Asperger’s criteria applied to me. I tried it on - I proclaimed myself “a mom with Asperger’s.” It seemed to really fit and I finally had an explanation for the difficulties I had been having. It also allowed me to accept and embrace my parenting problems as my own.


I still don’t know, though. Sometimes I think maybe this is all in my head. I really don’t know what’s normal and what’s not, and even if Taz really is atypical I don’t know if I’ll ever be ready to pursue a diagnosis for him. I don’t want the experts to tell me what he should be like because even though parenting him is really hard, a part of me still believes he is perfect just the way he is. He certainly would be... if we lived on a ranch.

Monday, February 2, 2009

The Waiting Continues

I started my own personal blog with these words two and a half years ago, but the same can be said today.

So much has changed since then, she is walking and talking now. She is in the preschool program for children with disabilities. She is fed mostly through her g-button. She is now profoundly deaf in her left ear. The episodes that once wracked her body have been absent for a wonderfully long time. She is hilarious and full of joy and we are now able to be a part of her world in a way that wasn't possible two years ago.

Still I wonder and wait, will we ever get a diagnosis? Will her progressive hearing loss affect her other ear? Will she ever outgrow the need of her feeding tube? Will the episodes come back? Will she always be a sick kid?

A life without diagnosis is one long exercise in waiting. We can treat symptoms as they arise but we cannot anticipate their arrival. As a toddler, no one could say with any certainty if she would ever walk or talk...but she did. Today, no one can say whether her condition is truly stable, if she will continue to improve or if one day, she will begin to decline. I'm eargerly anticipating her well-child check next month because this is the only time she will be age appropriate with her milestones, with the exception of gross motor. I don't know if this will ever happen again.

I don't dwell on the future much, because it is an exercise in futility. I could paint myself the rosiest picture possible and set myself up for heartbreak if it never comes to pass, or I could paint a scary picture to prepare myself for the possibilities and cause my heart undue stress. Either way, it won't change things for us. We won't know what the future holds until we meet it face to face.

Our life is a neverending drive through the hill country, we never really know what is waiting for us over the next hilltop. Sometimes we are met with the the most beautiful view anyone has ever laid eyes on, and sometimes we find ourselves on site at a massive traffic accident, cars piled up as far as the eye can see. There is no warning until we coast over the hill. It is the wildest roadtrip of my life. My hope is, as it always has been, that on the other side of one of these hills, we will pass a billboard with our names on it with an answer spelled out for us in bold, neon print...and if we just can't get an answer, then at the very least, maybe we'll pass a sign that hints at what lies just over the next hill.


Sunday, February 1, 2009

The Club

The club that nobody wants to join is happy to have you!

These were the words I heard from the kind ones. The ones who were about to become my family - but I didn't know it yet. I was still resistant. These were the words I turned to when it became clear that there were many unkind words waiting for me.

"Did you have an easy pregnancy?" Suddenly translated into what was unspoken: "I wonder what she did - I wonder when things when wrong - I am so glad that my child is fine because I ate an all organic diet, drank six glasses of water each day, and never touched a glass of wine."

Because, even if we just have to guess what questions are behind the unkind judgments, what does it matter? It is a judgment, and it has been passed.

You may choose to defend yourself, you may walk away in disbelief, you may feel volcanic anger welling up inside you, you may surprise yourself by finding yourself wishing to put your fist down someone's throat.

Soon, you will become adept at spotting them before they attack: The Unkind are lurking everywhere. And you will also gain the equally useful skill of finding The Kind Ones. The ones from whom you first turned away - they do not hold it against you, because they remember.

They remember the resistance that comes before the acceptance. And they want you. Not because, as you first tell yourself, misery loves company. But because they truly understand and they truly care for you.

They show you compassion that you have never experienced before joining this club, and you begin to wonder how it is that all of these compassionate people who are holding you up, are the parents of special children.

You realize that this is where the compassion in the world lies. You are impressed to be in such company. And then you realize, you too are a special parent of a special child.

Maybe you are deserving of this compassion more than the judgment.

When you accept this, then you, yourself become one of those admirably compassionate people.

And thus ends your initiation process into the club.

Welcome aboard.

Saturday, January 31, 2009

How do you know when to make the switch?

I really think that my son, E-Niner, could use a work-up of his medications. Our Ritalin regimen doesn't seem to be cutting it -- he's got a very severe case of ADHD.

And when I say very severe, I mean to say that it was apparent at four months old when he looked like a jack rabbit in heat trying to get himself from his belly to all fours.

Four months. We didn't think we had a problem. We never saw anyone else's kid do that. But we were in that blissful new-parent, first-child mind-set that allowed us to believe our child was a superior being.

At ten months old he was flinging those giant, economy sized boxes of diapers around our family room. He'd hold the box over his head throw it, and then run to the other side of the room to pick it up and do it again. Ten months.

I could proceed with the litany of milestones and warning lights we missed, but you get the point. Fast forward to five years old, two school expulsions, and one psych ward visit later.

He's out of control in the mornings before we give him Ritalin. He's a mess in the evening when it comes out.

When I say "out of control" and "a mess," I mean to the point that our family has now separated in half during those times (one of us feeds him, the other hangs out with our other son) because adding just two people in the room over-stimulates him.

So I've been thinking about switching up his Ritalin to Strattera. I hear they make a dose that lasts for 24 hours, which sounds wonderful. (We've tried long-acting stimulants in the past, but his crashes off those, even with a tiny dose of Ritalin to ease him off, were literally 911 unbearable.)

Anytime we switch-up his meds -- and by meds, I mean Ritalin, Seroquel, Depakote, Clonidine -- it's like an enormous earthquake sets off in his body. There is part of me that feels very nervous of this idea of switching to Strattera.

First, Strattera works in a different part of the brain than Ritalin. So who knows if the drug will be as effective for E-Niner. So that's that whole headache.

Next, I'm worried about it suppressing his appetite. The number one thing kids need to do at his age is eat and sleep. Eating has been an uphill battle since he started Ritalin since he's on it eight consecutive hours a day. That's eight hours of not eating. What if a 24 hours dose suppresses his appetite that long? It's not like you can reason with a five year old.

Then I'm worried about it not working, which means that his safety, our safety and the state of our house and property are all at stake.

At the same time, what we've got going around here isn't working too well either.

I hate this about medicines. It's like you're running these high school science experiments that are iffy at best. Try it, see if it works, if it doesn't try something else.

I hope someday -- in his lifetime -- prescribing mental health drugs won't need to be such a coin toss.

Friday, January 30, 2009

Erasing the Lines, Even as I Draw Them

I’ve been thinking about civil disobedience lately with the recent inaugural event, the swell of pride in the air holding the promise of Dr. Martin Luther King’s words like gifts, like baby birds in the nest.

I’ve been thinking about Gandhi, rolling the word Satyagraha in my mouth, round and round. Satyagraha, the name of the passive resistance movement waged against the British until India won its independence in 1947. Satyagraha, from the Sanskrit words for truth and obstinacy. Say it: Satyagraha. You can’t help but feel its quiet intransigence, its power.

We’re did a short block on Indian culture in our homeschooling lessons last month, reading about Gandhi’s life and his work. We’re doing a short block on African American culture this month. I planned it so that our stories would coincide with the start of the Obama’s presidency; I didn’t let myself think there’d be any other outcome.

We just finished reading the Enki story about MLK and this morning, I took my son, Fluffy, to his first real play in a real auditorium, the room dark, the seats plush, the actors larger than life on the stage before us. Not like the many puppet shows and picture books enactments we’ve attended, sitting on our dusty coats, toddlers wandering around, punctuating the air with sticky lollipops.

Fluffy didn’t want to go. The idea sounded good when I first mentioned it, the thought of this future thing as abstract and fleeting as a puff of breath that disappears in the icy air of winter. When it came time to leave, he collapsed to the kitchen floor, his own passive resistance. This happens when he feels sad or worried, when answers are disappointing, when transitions lead to places he’s not sure about. It’s part of the Aspergers mixed with dysregulation from sensory confusion and after four years of poking my stick in the dark, I’ve finally found a couple of strategies that can usually get us out the door with relatively good humor.

He liked the play, sitting through the whole hour even though some of it was hard to hear, lots of information spoken too quickly. But those words, King’s words, how could one not love those? I cried, of course. I always cry at things, Bambi, WallE, Gandhi, anything that ends in that ‘e’ sound, MLK-e, Obama-e.

Last night I stayed up very late watching the 1982 movie about Gandhi starring Ben Kingsley and what struck me on this viewing was that Gandhi believed in fighting. Fighting. King, too. They believed in revolution, in inciting action, in a complete and utter shift of consciousness and system, in unrelenting, non-violent disobedience.

Hate the sin. Love the sinner.

Fluffy’s been taking a circus class on Saturdays. He goes with his dad so I’m not there to see what goes on, to coach or pull the teacher aside before and/or after, to walk that line between holding the group’s interest and advocating for my son’s wellbeing and success.

Apparently, a parent has expressed concern about the class, about Fluffy’s behavior, about her own daughter’s safety. When I read the email, I got that feeling in my body I’ve gotten many times over the years right before being told that Fluffy has to leave, like the very first time when he was kicked out of preschool at three. It's an intertwining knot of defeat, sadness, frustration and fury.

I know this parent has every right to be concerned about her daughter; she’s advocating too. But she’s typical. Her daughter's typical. She’s in a class with a child that’s not typical. And I can’t shake the feeling that she, the mother, simply wants the non-typical child to go away or get typical or suck it up enough so that all the non-typical stuff can wait until after her little girl skips down the hall and climbs into her car seat.

She doesn’t want to deal with anything hard. But guess what? Hard is part of life. And hard stretches. And hard teaches. And hard softens, when it’s in contact with the proper elements, when the touch is gentle, curious, warm, creative.

I’ve never gone in for the big Fight Against Autism but I was instantly recruited to the Fight For My Son’s Happiness from the first moment I held his glorious, sticky little body.

So I’m back to thinking about civil disobedience, about the things that need to change, the beliefs, the attitudes, the divisions between us and them.

I want to be the change I wish to see, I want to walk my dream into being, I want to extend goodwill and still mount an unrelenting, peaceful attack on the tides of ignorance and fear, erasing the lines that section us into camps, even the ones I’ve drawn here.


Thursday, January 29, 2009

another first

My name is J. and I am a parent.


I am a Mother to 2 beautiful boys, they were not nurtured by my body, nor did I know them for the first years of there lives but I am no less their mother then the woman who conceived them.


I did not breastfeed them as infants or change their diapers. I did not see their first steps or hear their first words. But I know the things that make them giggle and cry now. I dry their tears, chase away monsters, protect them from the bullies at school, yell at them when they drive me crazy and tickle them as we walk through the grocery store. I buy them treats when I am out because I know that they will love that toy or book but I will never really know what they were like as little boys.


Sometimes I feel as though I missed out by not having the privilege of being their Mom sooner. If they had come here first, instead of being with the four other Moms they had between leaving their birth family and coming to their forever family. Sometimes I cry because it makes me so sad to know that these 2 little men had to go through so much to make it here and wouldn’t it of been easier if it hadn’t happened that way.


However, 3 years ago when these boys had to leave their birth family I was not ready to be their Mom, sometimes I wonder if I am ready now. Three years ago I was falling in love and getting married, making plans and dreaming about helping kids who needed families to love them.


I did not think it would happen quite like this, that we would adopt the first two who walked through our door, knowing that we would keep them even before we met them. I thought there would be many kids coming and going first, that there would be time for me to wrap my head around being a parent. To figure out what worked for me and my husband, time to discover how we would parent together. I thought there would be few practice runs with kids that needed a home for a few weeks or months while their birth families got back on their feet. You know, kind of like taking a niece or nephew for the weekend when you are pregnant to getting a taste of being a parent full time.


Life is not always what you planned though, things do not always work out the way that you wanted or expected them to. So here, I am six months later, a Mom to two precious boys who need a lot from me. Our days are busy, filled with exciting and frustrating moments. My kids have many needs that other kids do not, they have struggles and issues that other kids never have to face but they are mine. I will love, nurture and respect them through each and every struggle because that is what Mom’s do.


I am excited to be a part of this wonderful group of parents and I am looking very forward to contributing each month.

The First Step

Did you ever think it would turn out like this?

I didn't.

In fact, I had an iron-clad deal (I thought). When we adopted, I checked-off the box that said, "No Special Needs." Didn't think I could hack it.

And believe me, to this day, I sometimes wonder if I can run this marathon.

There are days that I say to myself, "I'm doing it! I'm doing it!" And there are those days, that sometimes come relentlessly for weeks at a time, that I say, "How am I going to keep doing this? I can't do this anymore."

So I started Hopeful Parents, a grassroots community where parents who understand what it's like having a child with special needs can connect.

Consider it a pit-stop in the marathon -- where we can go for attention to our wounds, where we can re-energize our way back on track, where we can look right and look left to see others running too, where we can hear the roar of the crowds cheering us on.

Hopeful Parents is a place of common ground.

Over the course of the next month, we'll introduce you to our diverse pool of talented, thoughtful writers who will share their stories, their feelings, their ups and their downs.

You'll meet parents raising children with physical, psychological, emotional, neurological, sensory, behavioral, social, genetic, and developmental disabilities. Some parents are single, some are married. Some grieve the loss of their child.

You'll also meet healers -- the "medics" who help us through our run. People we can turn to in our pain; people who can help provide some relief.

These writers -- the parents, the healers -- remind us that we're all on this journey together. We don't have to go it alone.

And with that spirit of togetherness, I invite you to get involved with Hopeful Parents. An easy way to start is by commenting on the posts that move you. Then explore the sidebar. There are quite a few links with ways to participate. Please check them out.

Whatever you do, please join the community.

Joining costs nothing and will give you some perks on the site -- access to discussion boards when they become available, the ability to find other hopeful parents in your area. But that's not why I want you to join.

You should join because we -- parents who face increasing medical expenses, parents who often times face uphill battles with our schools, parents who feel the minority in broader social settings -- will have a louder, more powerful voice if all of us, regardless of diagnosis, could come together as one unit.

If every parent of a child with special needs were to join Hopeful Parents, imagine, for a moment, what we could do. Imagine banding together as a whole, collective voice to advocate for our children. Imagine a united assembly, strong in numbers, able to encourage more thoughtful leadership and policies so that we can better help ourselves, each other, our children, our communities, our nation and our world.

It's not a small vision. But it can be done. It starts with you.

A grand undertaking like this -- our marathon -- starts with a step. Here's the first one.