A Dad's Tough Call

The first year after Graham’s diagnosis with ASD was like trying to dig out from some dark wormhole we as a family had abruptly fallen into.   My wife and I were disoriented, shaken up and worried.  But by the end of that first year, I was feeling like I had more dominion over the situation.  We’d found a more accurate diagnosis (SPD), a treatment approach that was working well, and we were under the care of doctors and experts that we trusted.  As soon as I caught my breath, I started thinking about the families who were falling down that same wormhole, about to start probably one of the worst years of their lives.  We’d get calls all the time from some mom or dad who’d been referred by a mutual friend whose child was showing autistic-like behaviors and wanted to pick our brains.  Jennie and I had our spiel down.  She would reassure the mom, tell her she wasn’t crazy, and let her know she wasn’t alone.  I’d talk to the dad, help him get a grasp of the issues, let him know it’s okay if he has feelings about this, and tell him there’s great hope.  And this always felt good. But I wanted a way to reach more parents.  That’s when I decided to take all the video I’d been shooting of our journey and make a documentary film.  When I started making the film, Graham was around three years old.  I thought about how he might feel about what I was doing, and that gave me pause.  But Jennie encouraged me.  Graham could help other kids struggling with the same issues, and what a marvelous gift that would be for a three-year-old to give. 

I made the film, and I’m so glad I did.  It has traveled the globe, mostly by word of mouth, helping to advance the cause of grey area kids.  After a few years of traveling with the film to special needs conferences and film festivals, I decided to make an update video.  Much had happened since the original film ended, and it was the most often asked question I heard:  How is Graham doing now?  So the camera came back out.  I filmed the start of Kindergarten, the IEP process, our attempt with vision therapy, our discovery of a movement based treatment approach.  The original film and the update will be broadcast together on PBS stations around the country starting his April.

This is the breakthrough I’ve been hoping for since we finished the film, the one that will finally get the film to a broad audience.  Yet this has also brought the issue up for me again:  Is this fair to Graham?  He’s no longer three and oblivious.  He’s seven, and he’s in first grade.  He has friends he’s trying to look cool in front of, and he’s come a long way from where he was in the original film.   I don’t want his past to haunt him throughout his grade-school years.  He’s seen his film, and knows dad’s been using it to help other families, and is generally a big fan.  He doesn’t grasp all the issues, but we’ve been upfront with him about his journey, and he’s mostly fine with it all. 

I’ve promised myself that this is it:  no more update films.  The camera has officially gone away.  And while I’m doing what I can to promote the film to the special needs community, and want as many families as possible to see it, I’m saying almost nothing to our little community of families where we live.   I don’t necessarily want his classmates to come in on Monday morning with a head full of questions for Graham. Going forward, Graham’s story will be his to tell.  And I can only hope that, when he’s older, whatever feelings he has about the film and my decision to make it, when he reads the pile of letters I’ve received from grateful parents he feels a sense of having been part of the solution.  But alas, only time will tell.

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Erik Linthorst is a dad and filmmaker whose award-winning documentary film AUTISTIC-LIKE: GRAHAM'S STORY will air on PBS starting this April.  For more info visit: www.autisticlike.com

Mrs. Bissaillon

Mrs. Bissaillon is the gym teacher at the Perley Elementary School. She is a stern woman who rarely smiles.

Her preschool and kindergarten gym classes are unusually well behaved. The word on the playground is out; the kids have been warned. This woman has no tolerance for misconduct.  It is as if the milk cartons in the cafeteria contain dire warnings and photographs of kids who misbehave in her class. She reminds me of a hardened Marine Drill Instructor as she barks out commands to her classes of tiny terrified tots.

"Joshua, if you can not be quiet and listen to my instruction, you can go sit over on the bleachers until you can." she barks. The once rambunctious child is jolted into submission as he hangs his head and slowly shuffles over to the bleachers to serve his sentence and pray that his photo does not appear on the milk cartons.

Before Nicholas started kindergarten, my 8-year-old son, Weston was relentless in his horror stories of Mrs. Bissaillon. Being a rambunctious child himself, and having served plenty of his own time on the bleachers, Weston made it very clear to Nicholas, this was not a teacher to underestimate.

Even parents dropping their children off at school in the morning seem to avoid any unnecessary eye contact with Mrs. Bissaillon. The mere sight of her seems to conjure up their own nightmarish memories of tyrant teachers and days spent in detention halls.

 I must admit, I too, am afraid of her.

So, you can imagine my surprise when one day Mrs. Bissaillon boldly marches up to speak directly to me. Thoughts run amok inside my head as I desperately try to prepare myself for what she is about to say.

She can’t be complaining about Weston this time, he’s at the middle school now, I think quietly to myself. It can’t be me; I don’t even go to school any more! Did I look at her funny? Does she notice the cold sweat on my forehead when I walk past the gym? Thoughts speed through my brain like ping pong balls. Then, as if a bucket of cold water is thrown over my head, I realize, oh no, it’s Nicholas!

More thoughts, faster this time, oh no, he had one of his tantrums, probably the full-blown kind where he throws himself to the ground, kicking his feet and screaming. That’s it, and now she’s starting to speak. I close my eyes to prepare myself for what’s coming. I am ready to hear how she is dedicating an entire bleacher section to me to help remind others of what happens to those with poor parenting skills.

 “Mrs. Peters!” 

“Yes?” I ask tentatively, cringing just a little bit.

“I need to tell you what a delightful little boy your son Nicholas is!” And for the first time in Perley Elementary School history, she smiles.

“What?” I ask.

“That’s right, she says, “Can I tell you just how hard this little boy works! Our first activity in class is running two laps around the gym. Your son led the class for the entire two laps!”

I am completely speechless. Her words have paralyzed me. I struggle to visualize my son actually winning a running race. She is still smiling as she continues her description of the day’s events.

“He ran two laps, played our beanbag game, and still had enough energy to help all the other children pick up their bags. He listened very closely to all of my instructions. But there is something else,” she says.

This is where she tells me about the tantrums, I think.

“Your son looks at me with such love in his heart.”

I am stunned. I look at Mrs. Bissaillon and quickly realize, that like Nicholas, this woman is often misunderstood. Underneath her hardened exterior, beats the heart of a deep and loving woman. She sees my son for who he is, a unique and contributing individual, not a horrific diagnosis. She is one of the truly special few.

Why was Nicholas so cooperative in class I wondered to myself? Was Weston able to strike fear into his heart?  Or was it something else?  Did he see something the rest of us could not?  Since his birth, Nicholas has developed many beautiful gifts. But the gift that touches me most, is his innate ability to seek out the individuals who seem to need the most love. He finds the souls in this world who are the most misunderstood, the most tormented or just the most saddened.  He finds the Mrs. Bissaillons of the world and he speaks to them. Sometimes with just a smile but more often it is with a warm and enthusiastic “Hello!”  The response to his enthusiasm, no matter how tormented, misunderstood or saddened folks feel, is always the same, a smile.

To me, it is as if my son has been sent from above with a very special mission, simply to love the world. There are days when the reality of Prader Willi Syndrome gets me feeling down. It is on those down days that I like to watch my son closely, as he gives his special gift so medicinally to the silent sufferers of this world. And with his unselfish acts of kindness, my silent suffering also comes to an end, at least for a moment.

“Did you hear me?” Mrs. Bissaillon asks, snapping me out of my thoughts and back into reality.

“Yes,” I say smiling at her, and suddenly she looks very different to me.

 

Please come visit us on our blog at www.onalifelessperfect.blogspot.com where you can share our stories on family life and learn more about our journey dealing with Prader Willi Syndrome, ADHD, Dementia and our effort to keep sane and enjoy our lives despite these diagnoses. 

Snorkeling with Oscar

 

Just this morning, though it seems days ago now, we tread carefully down the steep grassy bank below our condo and then inched our way across the slippery old volcanic rock toward the snorkeling bay.  It’s 8:30 am and our flight leaves Hawaii in just a few hours, but Oscar declared last night that he wanted to swim with the giant green Honu turtles one last time and we are trying to make it happen.

As we approach the snorkel spot Oscar sees the waves crashing against the black pitted rock, white spray bursting high off the water, and he starts to panic.

“I don’t want to. Uh-uh. I changed my mind.”  His voice is still calm but his resolve is clear.

Paul and I communicate over his head with eyebrows and shoulder shrugs.  I’m on the fence – the surf is much rougher than it was yesterday when Paul and I snuck away for a half hour in the bay.  I’ve been here many times before during high surf and have been slammed against the rocks when an especially big wave rolls in.  Paul thinks we can still do it. He slings Oscar up on his back and carries him across the slickest parts over to the edge where I am already sitting with my flippers and mask on.

Oscar’s protests increase and soon he is screaming. “I won’t do it. You can’t make me. STOP!!”

I pull Oscar’s right flipper on up over his stubborn low-toned foot while Paul talks to Oscar about his mask. The mask is all-wrong – it’s squeezing Oscar’s lip. It’s hurting his hair. The snorkel will let water in. Oscar yells reason after reason why it won’t work today, even though it worked just fine yesterday. He pulls the right flipper off but I wrangle it back on and somehow the left one too.

“NO NO NO. STOP!”

The flippers are off again. Oscar is still screaming and I am definitely not looking up at the grassy banks filled with snorkelers and onlookers. A woman calls to me from the water and I just know she’s saying I’m a horrible mother to be putting my son through this.  I ignore her and the words I think I am hearing.

Paul says jump, and I do, into the cool jostling water and try to find my balance on the rocks beneath me before another wave crashes in.  He picks Oscar up, still screaming and hands him down to me.

We’ve compromised – no flippers, no mask, just goggles and a boogie board.  I help Oscar adjust the goggles.  Now in the water he calms down and we set out to find the enormous turtles whose scaly heads we see popping up for air from our balcony.  Large greenish brown shells float along the surface of the bay at all times of day here, but especially in the morning, and up until five minutes ago Oscar was clamoring to go.

We spot our first turtle quickly, thankfully.  The turtle’s flippers pull gracefully through the water.  He points his head down and slowly glides to the bottom of the bay where he nestles under a rock.  I lead Oscar over and show him where to look. He does, and after watching for a half minute, he comes up for air giggling hysterically.  Oscar immediately wants to search for more turtles and we find them easily.  The smallest, a youngster, is still much larger than Oscar himself and I think our whole family together would still take up less space than the largest.  We swim across the bay spotting them at the surface, resting under rocks and just swimming along peacefully.  After half an hour, and seven Honu turtle spottings, I finally convince Oscar to head to shore where Paul is waiting to pull him out.

Usually Oscar forgives his grudges quickly, especially when the experience is worth it, like today.  But as I lift him out of the surging waves and safely into Paul’s arms he yells, “That was wrong! Don’t force me like that again!”

Back in the condo, as I hurriedly cram the last stray items into our bulging duffle bags, I reflect on how difficult it is to know just how much to push Oscar.  We face this dilemma constantly with everything from simply trying a new book to far more challenging tasks like snorkeling.  Today was definitely borderline but Paul and I were in agreement  -- we knew that he would love swimming with the turtles and we also know that each time we push him an inch (or a foot) beyond his comfort zone, we are creating memories for Oscar that he will draw upon for courage and confidence in the next difficult situation. 

I don’t regret our decision today, though maybe I should. I do regret that in order to help Oscar overcome his rigidity and his fears that sometimes we have to step outside the boundaries of what I consider to be our parenting style and literally force him.  I think we’re doing the right thing, and Oscar’s recent willingness to try some new activities (without being coerced) seems to indicate we are on the right path, but stilI I am just not sure.   

 

Mary blogs about life with Oscar (who has Prader-Willi syndrome) and the rest of her family over at Finding Joy in Simple Things.

 

Longing

This piece was originally posted on my personal blog Spirited Blessings in August 2010. I try to write original posts for Hopeful Parents but life, as I know you all can understand, is somewhat chaotic right now but this piece once again speaks directly to how I am experiencing life with my son right now.

 

Driving down the street I almost pass by the boys on their bikes without a second glance. But I notice them - goofing off, treats from the store in one hand, pretending to run each other off the sidewalk. Their tanned skin and bruised legs tell stories about their adventurous summer.

I realize I have been sitting at the stop sign moments too long - it has hit me. These almost adolescent boys enjoying a long summer day of freedom - they are boys in my sons grade at school. He started Junior Kindergarten with all of them - when they were all on equal footing. Now they are worlds apart from my son in so many ways. My heart hurts for the things my son cannot do and tears threaten to spill down my face.

I glance at my son who is sitting in the passenger seat beside me. Has he noticed them? Does he long to be free like they are? He gives a little wave to them as we drive by. There is my answer and I find myself wishing in some ways that he was less aware, for his sake. As we leave them behind he leans his head against the glass and closes his eyes.

He is all too aware of the differences, his longing is strong even if it is not voiced. I hold back tears but I reach over and take his hand. He squeezes it and I wish I knew what to say to make it better. But I know nothing I say would take away the pain of his longing and his feelings of loss. There are no words.



 

mom2spiritedboys is the mother of two very spirited boys and is now embracing extreme parenting in the trenches after trying to fight it for many years. She is married to a wonderful man who works hard to ignore the state of disrepair of their home and made her the happiest woman on earth when he took over laundry duty in its entirety in September 2009. You can read more from her at her personal blog Spirited Blessings

Respite. Get it. Get it soon!

Recently, someone left a comment on my blog about a foundation that helps provide respite to parents of special needs children. This really resonated with my wife and I because we’ve been dreaming of doing something similar for parents.

We meet parents all of time who are burned out. We know it all too well ourselves. Yet, I’m very surprised there are very little community, state/national legislation or not-for-profits that  focus on family support for the sake of respite only.

Ok, there are a few options but only if your child is ‘disabled’ enough or ‘medically fragile’ enough, according to criteria set by insurance companies or legislators, which usually puts a limit on funding sources.

On one hand, I can understand why there are very little organizations that support  families but on the other, I‘m a bit confused.

For example, the person who runs the not-for-profit mentioned above also said that the toughest part of the job is getting parents to accept a grant from the organization. What? Parents really don’t know how to accept a gift that gives them reprieve?

I could understand this if parents couldn’t determine what they would do with their time, as that would take some adjusting to but to not accept it at all baffles me. We parents, at some point, must learn to let go a bit.

We need to understand that no one will ever provide the level of care that we can and that’s ok - no matter how medically fragile, disabled or emotional our children are. We need stop waiting around for the left foot to fall by living in crisis mode all of the time.

When we do this, we are jeopardizing way more than we realize, ranging from our relationship with our spouse to our own health. At some point, we need a break. Not only do we need a break from our children but also from each other as spouses.

When is the last time you took a break for you and only you? (yes, men, too!). Men and women are often stereotyped to handle crises differently but I don’t think that’s always true.  I think there are many similarities between sexes but we often never get or make the time to explore what they are.

I’m writing to advise you to do some research, to spend some of your savings, to find anyway possible to make respite for yourself, no matter what that may look like - only you know!  Start small by taking an hour here or there, getting your haircut, taking a walk, going to the museum, go bowling, whatever you like to do, perhaps even try something different. There’s simply no reason to try with just a few small steps at a time. 

We parents of special needs children are in this adventure for the long haul (meaning the rest of our adult lives) so get out, get away, get on with focusing on yourself with some respite. Get it.  Get it soon!

This post is dedicated to our youngest, Eliza, who turned one today. Happy birthday, sweet girl.

Tim Gort is a professional writer who writes about his personal challenges and triumphs of being a special needs father at the family’s bog The Gort Family.

What We've Lost

My son is very complicated and it takes a lot of time, energy, patience and professionals to help him through life. Doctors, nurses, teachers, tutors, therapists and us. There are a lot of us; probably 25 people together between mental, developmental and physical conditions for which people are actively working at to help him find his way.

Three years ago this coming May we noticed he was changing. It was a year post kidney transplant and the symptoms of depression with suicidal tendencies crept in, he’d started staying inside more, he became more defiant. Because he was always defiant that part of it was barely noticeable. We’d had an incident on Mother’s Day where he drew a picture of a train and me on the train track. He said he wanted the train to run over me. So obviously, we knew something was “off” with him, more “off” than his regular offness.

Back then we watched our child exist in extreme pain and exhibit the outward symptoms of such pain. It includes any of number of self destructive behavior including but not limited to anger, rages, suicidal thoughts/actions, self-hatred, reduced appetite, destructiveness, disengagement with life/friends, academic struggles became worse, bouts of uncontrollable crying, and complete shutdowns of silence. Long minutes, sometimes hours, sometimes days of deafening silence. Likewise it could also be hours of raging.

Any of those symptoms or all of them could and often did happen each day during a two+ year period. Two years of living in a way that seems unbearable now. Many days I would cry as his mother, yelling to my husband, “I can’t help him! There’s nothing I can do that will help him. It’s too much!” Many times I said, “It makes no difference that I am in his life, he could have any mother and it wouldn’t matter because he is not connected to me in any recognizable way children are connected to their parents.” Obviously big picture, I’ll do anything for him, but as his mother/caregiver, it was hard not to feel any connection from him.

A little over a year ago we drove our son to a (mental) hospital and we admitted him for psychiatric care. Since then I realized how truly horrible it was. I realized that even though I was doing everything I could do to help him, it helped me to believe that there was a chance that he couldn’t get better. It was my way of helping myself get through the next bout of whatever he was that day, or that minute.

I’m asking myself how did I get through the typical day? You know what I did? I told myself that my son was who he was and while a large majority of people didn’t understand him or care to be around him, that I would do my best and I would love him unconditionally. And then I cried. I told myself that I didn’t know how I would support and love him unconditionally day to day, but that I would do my best to not crack under the pressure or at least enough so he didn’t know it. And then I sobbed some more.

As we moved toward healing for our little family unit I was hit with the reality of how bad it was, how truly traumatizing. We’d been living in our own war zone and his mental health issues have set the pace for the family for a very long time and now that he is stable I’m struck by how PTSD is a part of my reality.

I’m grieving. I’ve many wiped tears away thinking about the time and opportunity lost. I’m so sad about what he lost and how his mental stability has affected all of us; but mostly our daughter. It’s not easy as a parent with the responsibility of helping your child with mental health issues, but being a 6-8 year old, watching your brother go through it? And with her own health issues? During the entire time that he was deeply suffering, she was going through her own personal health crisis; failing kidneys and transplant. I (reluctantly) signed up for this? But she had no choice.

While I am celebratory going into his four years of kidney function next month – something that has gone right for him – I am not without sadness and grief and fear today. I have learned that it’s entirely possible to live with some fear and with complete gratefulness at the same time. I’ve learned that while we are looking at the immediate future with hope, we’re stuck with the knowledge that there is a long road for all of us.

I’ve learned that there’s a rarely spoken about force that guides a parent to get you through what you have to go through for your child and it’s the ability to think it’s not that bad when you are in the middle of something that is that bad, but it comes at a cost. I’ve learned that loving all the truths about my son means acknowledging what has been lost. It means that there’s a part of me and our family that will never be the same. Time and opportunities we’ll never get the chance to retrieve.



Julia blogs at Kidneys and Eyes and has a social networking site for special needs parents called Support for Special Needs. She also writes for magazines and websites about special needs parents and Aiming Low, where she gets to (luckily) write about funny stuff.

The game of Scrabble

Something miraculous happened last night.

My son Ben, 16, played a game of Scrabble with me. This was miraculous because Ben has a terrible time focusing, which makes game-playing challenging.

But this time Ben was interested. He even enjoyed moving his letter tiles around to look at word possibilities.

He came up with “ARM.” Then he came up with “ALY” – the name of his cousin, though she uses an “I.” I was ecstatic. Later he produced “ICON.” I don’t know if that was just a lucky guess because he couldn’t speak to explain it.

I had to keep score because Ben can’t add.

We had a lovely time, but I couldn’t help thinking that he would never be able to play at one of our family gatherings, with his cousins.

Just the day before, we celebrated my birthday at my mom’s house. Scrabble is a competitive game in my sister-in-law’s family. Ben’s cousins are brilliant students – one in second-year university already holds prestigious research grants. My SIL rarely lays Scrabble tiles down without forming double words and knows all the obscure ones most people have to look up in the Scrabble dictionary. My other children joined in the game and it moved swiftly around the table, with words like ‘FEDORAS” and “FOLLOWED” filling the board.

Ben sat off on his own in a chair, reading an old picture book that had something to do with acorns and adventures and making the odd sounds he produces because he can’t speak. He couldn’t participate because of the fast pace and complex language.

And somehow I couldn’t help thinking that this Scrabble game represented the value our family had always placed on education and academic learning. And it made me think how I, too, in the past had revered intelligence and somehow felt it was an ability a person earned through hard work. To me it seemed to be a higher or more refined quality, let’s say, than physical beauty or athleticism. In fact, I once had an argument with a university friend who said if she had to choose between beauty and brains, given our culture, she’d choose beauty. To me that showed a certain superficiality and materialism that I didn’t associate with intellect.

But since my son Ben was born I’ve had to acknowledge that my intelligence had little to do with anything I ‘did’ or ‘‘worked hard at’ but was, instead, simply a gift bestowed upon me at birth. I was lucky.

My son was unlucky and will always struggle mightily to learn and to retain information and ideas in his head.

He can’t join in the family games of Scrabble and he won’t enjoy the intellectual growth, social life and freedom of university.

And while I was sitting there watching our family play Scrabble and Ben was babbling to himself and reading or playing with his Star Wars characters – no doubt with intricate storylines playing themselves out in his silent imagination – I couldn’t help remembering that when I was pregnant with him, my SIL had said: “We have to be careful not to compare our children.”

Sometimes I envy my brother’s life. His child-rearing is coming to an end and he’s able to take great satisfaction and comfort in his children’s burgeoning independence.

But rather than wishing that Ben could be more like his cousins, I think my real wish is that my family better knew the inner world of Ben. They don’t know his sign language and they don’t know how to interact with him. I don’t know if they’re able to see past his odd and anxious ways.

I wish I could tell them about how Ben came up with “ARM” and “ALY” for Scrabble and they’d be as excited as I was. I wish I could tell them that when I was prodding Ben to send an e-mail to his dad yesterday, he chose the correct “too” in “I miss you too” and my heart leapt. But we don’t have a common frame of reference anymore. We’re still playing Junior Scrabble and they’ve moved on to post-graduate work.

I assume they feel sorry for us. I think that’s how I would have felt about our situation, before it happened.

Louise Kinross is editor of BLOOM, a magazine and blog on parenting kids with disabilities at Holland Bloorview Kids Rehabilitation Hospital in Toronto.

Us Too Please

Many years ago, I would go shopping or out to a restaurant without a thought about accessibility.  I would walk up curbs without thinking about people in wheelchairs.  I would get annoyed with store aisles that were so packed with merchandise that I couldn’t find what I wanted.  But, it would never occur to me that some people wouldn’t even be able to move around that same store.  And like a lot of other people, I would stare at a blind person using a cane, but I wouldn’t ask if I could assist or direct them to the checkout register.

All that changed when I adopted four children, two of whom are in wheelchairs, one who is blind, and one who doesn’t handle too much sensory input very well.  Although those adoptions began 14 years ago, I’ve not seen much progress related to accessibility in my community or other communities my family visits.

So I've created a new website as a way to raise awareness about accessibility and inclusion.  My new site is www.ustooplease.com. 

As my children and I travel through our community, I will review the places we visit.  I will write about how physically accessible they are – how welcoming they are to people with disabilities – how inclusive a product or service they offer – and whether or not they make reasonable accommodations for people with disabilities.  Although my focus will be on my own community and my home state of Virginia, I would like to see the site expanded to include other areas. 

I do not mean www.ustooplease.com to be an exercise in bashing.  I will share the good as well as the not so good, but I will always let each establishment know the results of my review.  I will offer to publish any comments they may have, and I will inform them of resources that are available for improving their accessibility and inclusive practices.

My sincere hope is that this endeavor will help to improve my community, as well as all communities, for people with disabilities.  I want to leave a legacy of inclusion for my children.  I want to make a positive difference in the lives of all people, especially those with disabilities.

Please let me know what you think of this idea.

Oprah Takes On Pediatric Mental Illness

Usually, I write something brand new for Hopeful Parents each month. For the past few days, though, I haven't been able to get Thursday's Oprah show out of my mind. This is the post I wrote the evening after that show.

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If you live in an age of social media, and if the most powerful woman in television does a show about something you are experiencing in your own life, you will get a nice, long look at exactly what the world thinks of you.

Which is.......shall we say.......enlightening.

Oprah featured Zach, a young boy with mental illness, and his family on her show today. I was nervous before the show because television has not historically been awesome with portrayals of families affected by mental illness. Dr. Phil did quite the hatchet job on Jen and Brad Wohlenberg in 2009 with a show that did nothing but expand the stigma and judgment of people with mental illness and their parents. I didn't have high hopes.

In general, though, Oprah did alright. She had enough humility not to question the existence of Zach's illness, nor its severity, which we parents of kids with mental illness expect as a matter of course. She let Zach and his mother, Laurie, say what they wanted to say, and I very much appreciated that Oprah spoke to Zach with respect.

Oprah was describing things he had done, most notably wielding a knife and threatening to kill his mom. I (ever desperate for something with which to reinforce my denial) said to Brian, "Wow, I'm glad Carter has never been that violent!"

Brian frowned at me and said, "Of course he has. He just tried to kill himself instead of trying to kill you."

I really hate the sound of the air leaking out of my pretty purple denial-balloon.

Oprah and Laurie talked about other things, things that loom large in the lives of my family and millions like us: shame, isolation, fear, guilt. Day-to-day life is painful and difficult, sometimes dangerous. All of that is true.

What is also true, and even more important with respect to public awareness, is lack of services. At every level, in almost every community of the United States, the mental health system is lacking.

Not lacking a little. There are no "gaps" in our system because there is barely a system at all.

That is what we want you to know. That is what we want you to remember, to write letters about, to scream from the rooftops.

We're too busy holding our kids and our families together to write as many letters as need to be written. We're too busy trying to force a profoundly broken medical system to meet the needs of our loved ones. We're too busy taking care of suicidal and/or homicidal and/or acutely psychotic kids at home because there are no hospital beds for them. We're too busy homeschooling our kids because the public schools can't or won't meet their needs. We're too busy trying to help our healthy kids have the most normal lives possible. We're too busy grieving the lives we thought we and our children would have.

Sadly, Oprah missed her opportunity to go beyond the shocking aspects of pediatric mental illness to what Zach and kids like him really need, like more pediatric psychiatrists, more hospital beds, more residential and day treatment programs, and better public school options for kids with mental health issues. We need respite care and more high-quality research with non-ambiguous funding sources.

Just like every family facing a serious chronic illness, our needs are significant. Until we decide, collectively, that it is not OK to send children with mental illness and their families home to deal with things the best they can, we're stuck cobbling things together the best we can.

Try to imagine that this situation exists for some other problem. What if the state you live in closed 90% of its neonatal intensive care units and started telling most parents of premature babies, "Gosh, sorry, we're all out of incubators. Good luck!"

We parents of kids with mental illness live with this constant sense that we are being judged or, at the very least, disbelieved. The mental health care system does nothing but reinforce this. When your child is in crisis and you call out for help and the person on the phone makes you an appointment for six months in the future, what can you think except that the whole world believes the problem is not real?

Social media tells me that that sense of being judged is accurate. Also? It can be pretty damn funny.

I spent a little time cruising the comments about the show at Oprah's site, and a little more time reading tweets about the show. I found a pretty awesome display of ridiculousness. Here is my summary of the proposed causes of pediatric mental illness:

• Trauma
• Demonic possession
• Poor diet
• Abuse
• Vaccine injury
• Allergies
• Heavy metal toxicity
• Multiple chemical sensitivities
• Poor discipline or lack of discipline (or as Brian and I refer to it, a serious prophylactic beatings deficiency) (I'm always left wondering: is the problem that I beat my child (abuse) or that I don't beat him enough (poor discipline)? The judgers need to make a decision.)

The most popular among these is demonic possession. Show me a blogger who writes about a child with mental illness who has never gotten an email that says, "Your child doesn't need a psychiatrist. He needs a priest!" and I'll show you a blogger who is just starting out.

In fact, the demonic possession emails and comments are amusing or, at worst, a nuisance. Ditto people who need to beat a drum about heavy metal toxicity, chemical sensitivities, and other fringe theories.

The abuse and trauma stuff, though? That shit can hurt, especially when it comes from friends, family, or medical or education professionals. Brian and I consider ourselves incredibly fortunate because Carter is the youngest of four children, and our three older children are mentally healthy, with only the most ordinary of emotional issues. We have often used Jacob, Abbie, and Spencer like badges, proof that, as imperfect as we are, we aren't totally corrupt. Still, it hurts to know that we are viewed with suspicion by so many people.

I do get it. I understand that when people watch Zach on Oprah's show, or read about Carter and other children with serious mental illness, it seems unlikely, even outrageous. How can it be possible, that a child would explode in anger over nothing? Why don't the parents don't just put a stop to it? For goodness sake, take away his privileges until he pulls his shit together!

It's easier to believe that we let ordinary behaviors of childhood get out of control. We allowed tantrums to turn into dangerous rages. We encouraged imaginary play until it became psychosis. We indulged fears until they morphed into crippling anxiety. At every stage, we refused to discipline, guide, control, or punish our children such that they learned to think, feel, and behave normally.

That is equivalent to punishing a child with cancer for growing a tumor or sending a child with muscular dystrophy to bed early because he won't stop falling down.

Incidentally, demons don't cause cancer or muscular dystrophy, either.

And finally, Oprah closed the show with a long conversation about positive and negative energy, and how Zach manages his symptoms by focusing on the positive. I'm at a bit of a loss about this. On the one hand, we work very hard with Carter on a set of skills that he can use to regulate his feelings. An extremely simplified (because of his age) form of cognitive-behavioral therapy, it's a key component of our treatment strategy.

On the other hand, I'm troubled by what I see as excessive focus on that aspect of Zach's treatment. A person who is seriously mentally ill cannot trick or talk him or herself out of that illness or its symptoms. I take issue with Oprah's extended focus on positive energy and white light, giving short shrift to the many other essential aspects of effective treatment, and the nearly insurmountable barriers to accessing that treatment.

Mental illnesses are complex and require multi-faceted treatments. Not everyone who is mentally ill can achieve a "normal" life. Extended conversations about the power of positive thinking and the like serve only to minimize the tragedy that mental illness can be, and give people who want to deny the seriousness of mental illness a little more ammunition.

From where I'm sitting, the deniers don't need any more ammunition.

Adrienne blogs about family life, depression, and pediatric mental illness at No Points for Style.

Oprah Takes On Pediatric Mental Illness

Usually, I write a new post each month for Hopeful Parents. This week, though, I can't seem to get Thursday's Oprah show off my mind. I keep reviewing it mentally, trying to put my fingers on exactly why it left me so unsettled. This post is the one I wrote the night the show aired. 

*          *          *

asdf

In Which Connor Teaches Me A Lesson

I'm in Spokane, Washington for my first ever roller derby bout right now!  So I'm posting a repeat of a recent blog post about some of the things that have been going on in our lives lately.

My scruffy haired little boy had a good day today.

He definitely needs a haircut, though!  So that's probably on our list for tomorrow.  Since we had rainy weather today he and I spent some quality indoor time together this morning; we read stories, played in his swing and in the bathtub, made music together, and had some cuddly time too.  Then he snuggled down, signed "Mommy" and grabbed my hand.  He took a little nap in his swing while I sang old family songs and gently rocked him. 

If I loved this kid any more I think it would kill me.

He's on Ativan again, which is unfortunate.  He didn't have any seizures today, but it seems like lately that's been the exception and not the norm.

One of the things we discovered at the clinic yesterday is that he's probably not been having febrile seizures.  Connor's autonomic nervous system is having such a difficult time right now that we can't rely on any auxiliary (i.e. forehead, armpit or ear) temperatures anymore.  They don't match up with his internal temperature.  So while we might get a reading of over 100 degrees on his forehead and under his arms, a rectal temperature will come out his normal 97.4 degrees (he runs cool). 



What that means is that instead of febrile seizures, Connor is probably having cluster seizures and the "fevers" we've been seeing are a result of his autonomic nervous system going haywire.  

So that leaves us with two conclusions.  The first is that since Connor won't tolerate an oral thermometer, from now on we have to take his temperature rectally.  Glorious.  The second conclusion is that once again, Connor's seizures are uncontrolled and we'll need to start looking at an adjustment of treatment. 

Perhaps even more disturbing is the fact that Connor has started twitching slightly every few minutes.  I hadn't even noticed because the onset of this was so gradual, but the doctors pointed it out.  Though we'd have to do another EEG to be sure, they think that his brain is probably misfiring every couple of minutes and so he's having what they term "microseizures."  These are new and suggest that the medication's effectiveness is continuing to deteriorate.  Needless to say I'm sad and worried about this turn of events.  

I have confidence that someday-- hopefully soon-- we'll figure out the right course of treatment and Connor will be able to enjoy life seizure free.  And I take a lesson in patience and optimism every day from my son, who takes his seizures in stride and only gets frustrated with them when they cut into his play time.  Otherwise once the side effects of the seizure wear off he simply smiles and gets back to whatever activity he was engaged in before. 

With him for an example, how can I do anything but pick myself back up from this latest heartbreak and dive back into my own most important activity-- making sure that my little boy is as healthy and satisfied as possible?  He deserves nothing less. 

And on the good days-- days like this one-- when he's giggly and smiley and energetic, I want to spend every precious second making him happy.

So we'll go back to the drawing board, talk with his neurologist and start looking at other solutions.  In the meantime I wouldn't mind a few more lovely days like this one.  It didn't matter that it was rainy and gloomy outside; my very own ray of sunshine held my hand for hours and wouldn't let go.

~Jess

short-sighted

We'd prepared for our visit to the optometrist in every way I could imagine.  I took her to the office the day before the appointment.  We met all the staff, apart from the eye doctor himself, who was out of the office.  I'd looked for a photo of him on the web site, but there was none.  Instead, my social story had to feature a cartoon optician.

We got to the office early.  Too early.  The toys provided in the waiting area barely captured Pudding's interest for a few minutes.  Then she skipped around the room, touching everything.  Even when her curious, sensory-seeking fingers weren't trying to touch every single pair of glasses, she constantly ran the risk of falling into the displays.  I was already out of patience when the appointment time came and went without our being called.

Finally a very elderly man walked in.  Spectrummy Daddy and I managed to contain both kids in a corner.  Waiting while our kids caused mayhem would be even more unbearable with a disapproving observer.  The receptionist helped him off with his jacket, then replaced it with a white coat.  He was the doctor?  Oh no.  He was old enough to be Pudding's great-grandfather.  How was someone so ancient ever going to be able to deal with the boundless energy of my hyperactive child.  I cast a horrified glance at my husband as we were summoned.

The calm and patient mother Pudding needs me to be was gone.  In her stead was my irritable alter ego.  I hissed commands at her.  Stop moving.  Don't touch.  Be quiet.  The trinity of things that she can't control.  Everything I did made it worse, which made me more angry.  All that preparation was for nothing.

We got her into the "princess throne" for long enough for him to determine that she has a slight astigmatism in both eyes.  Then she'd had enough of cooperating.  Every word I spoke agitated her, but the optometrist remained silent, and calm.  Had I really judged this man?  Don't I get mad about people doing that to my girl?  I'd decided that he would be cranky and intolerant before he even began.  But just look: that described me, not him.  I added shame to my negative whirl of emotions.

As I stood there wondering what my next move should be, the optometrist moved a spinning light-up toy over and around my body.  Pudding was entranced.

He told me to watch her as she tracked the toy with her eyes in a smooth motion, her head perfectly still. 

"She's amazing.  She has to make so much of an effort to see, but she follows it better than most people that come here.  I'd like to work with her, she's really great."

He asked me how I felt about trying vision therapy with her.  Honestly, I'd found that afternoon so trying that I was filled with dread at having to return on a regular basis.  But that was due to me, Pudding was fine until I'd lost my composure.  I'd looked at this man, but I hadn't really seen him.  Yet here was my girl at her worst, and he could still see the best of her.  We need him on our team.

He tested me too.  I'm short-sighted, but getting less so as time goes on.  I couldn't agree more with that assessment.

 

Temple Grandin

Recently it was Catholic Schools Week and one of the days was Day of the Student. The kids got to wear free dress, and Rojo’s teacher showed a movie, something she never does. Rojo was excited and mentioned this to me several times beforehand, “Mom, instead of PE and geography and Spanish, we are going over to the Parish Center and watching a movie on the big screen TV!”

Now, to my knowledge, Rojo has never sat through an entire movie, he watches a ridiculous amount of TV, but they are half hour sitcoms (think: iCarly and Hannah Montana), and he watches those in bursts and takes frequent Go Bug Your Mother breaks. I wondered how that was all going to work, and hoped that at least they picked a movie that would appeal to, and be appropriate, for a bunch of squirrely thirteen and fourteen-year-olds.

When he got home from school that day, I asked, “ Rojo, how was the movie?”

“Boring.”

“What did you see?”

“Temple Grandin.”

My heart and stomach did a little flip.

“She has autism, and she would not shut up!”

I knew that was my Mary moment and the perfect opportunity to talk to Rojo about his own autism (and the fact that he will not  shut up), but I wasn’t quite ready.

He brought up the movie again later that evening. “Temple Grandin is like me,” he said, “she didn’t want to go to college.” I knew I had to seize the moment.

“There is another way that Temple is like you,” I said, “she has one type of autism, and did you know that you have a different type of autism?”

“Does everyone?” he asked, turning the knife just a hair to the right.

“No, not everyone, but lots of people. It doesn’t mean that you aren’t smart, it means that your brain works differently.”

“Some people have Asperger’s,” he said.

“Yes, that is another type of autism. There are different types and it affects different people differently.”

“Does Woohoo have autism?”

“No, “ I answered, “but lots of people you know, do.”

“Like who?”

I then proceeded to tell him about all the kids in his school/life that have one form or another of autism. He seemed to be taking it all in. “How do you feel about that?” I asked.

“I couldn’t care less,” he said, “let’s play basketball.”

I think he does care, and I think he doesn’t care. I think for the last two years (at least) he’s been grieving in his own way, and coming to his own understanding of his differences, his challenges, and I pray to God, his gifts.

hope defined

**

To: Jess @ Diaryofamom.com

From: A young woman who stumbled across Diary quite by accident and who is now determined to help change the world @ her e-mail.com

Re: How do you fight ignorance?

Jess,

I've been trying so hard to help you with your cause, but people are just so ignorant. Today my friend's father posted this on Facebook. Her mother thought it was hilarious.

(Ed note: Even for purposes of illustration, I can't in good conscience post the picture to which her e-mail refers. It was a photo of a beautiful young man who appears to have Down Syndrome. He is wearing a number and is running on a track - his face triumphant and full of joy. The text reads 'Arguing on the internet is like running in the Special Olympics. Even if you win, you're still retarded.')

For the love of God, Jess, they're ADULTS. Not a 22-year-old-that-just-started-being-an-adult like me. REAL adults. Laughing at a kid? Really? 

I tried to talk to him about the ignorance of his words. He told me that "retards don't use the internet, so it's okay." I told him it was not. He told me not to worry about things no one can change. I told him that anyone can start to show and spread respect, that this CAN be changed.

My peers listen to me. They've been trying. But how do you convince a set of parents twenty years your senior that they are being disrespectful? How do you get through? I showed him your post with Katie's letter. I've been using it as a staple example to show people how their words can hurt others. I hope it works. I just wanted to let you know that I'm trying to get more eyes onto that letter to turn them around.

H

**

To: A young woman who stumbled across Diary quite by accident and who is now determined to help change the world @ her e-mail.com

From: Jess @ diaryofamom.com

Re: Re: How do you fight ignorance?

H,

Oh, honey, sometimes you can't change people on a dime. But you've dropped a pebble in the water and the ripples will go farther than you might imagine. Even if they don't change now, they've heard you. It sinks in on some level. Perhaps slowly they'll evolve. Or heaven forbid they'll have a grandchild someday with special needs and THAT will change their views. 

But in the meantime, keep doing what you're doing. Don't let the outrage get the better of you. When it does, the dialogue comes to a halt. Remember that people like that speak out of ignorance. Perhaps someday you can ask them, 'What if that were your child? Or your daughter's child. Would it still be funny?' 

You can't change everyone, but you have already changed the environment in which they make those jokes. Next time they say something like that in front of their child (your friend), she won't laugh. She will be sensitized. And even if she doesn't admonish them, she's not laughing. It makes it a lot less fun to tell 'jokes' when they make your audience cringe. Eventually, they won't have any audience left. 

Keep at it. Change happens slowly. Sometimes imperceptibly. But it happens. And I love you for trying.

J

**

To: Jess @ diaryofamom.com

From: A young woman who stumbled across Diary quite by accident and who is now determined to help change the world @ her e-mail.com

Re: Re: Re: How do you fight ignorance?

Jess,

.... I am really hoping that it did sink in somewhere, even if they snickered at me on the outside to preserve their pride. I know, at least, their daughter won't laugh next time. She called me later and apologized for them. She told me that the sensitivity of the issue had actually never occurred to her, and that she was going to try to increase her own awareness. She sounded sincere. 

H

**

A twenty-two year-old who wandered around the Internet, stumbled across a blog and stuck around.

Who cared enough to learn our story. 

Who is now, one conversation at a time, helping to change the world for our children. 

Spreading awareness.

Teaching respect.

Living with compassion.

Speaking up.

Creating a generation of advocates.

Making a difference. 

That, my friends, is HOPE.

 

Spread The Word To End The Word

 

Jess can be found at Diary of a Mom where she writes about life with her husband Luau* and their beautiful daughters - nine and-a-half year-old Katie*, an utterly fabulous typically a-typical fourth grader, and seven and-a-half year-old, Brooke*, a loving, talented, hilarious second grader who has autism.

She also runs the Diary of a Mom Facebook page, a warm and supportive community of parents, friends, adults on the autism spectrum and some random people in her life who cared enough to hit 'Like' and probably now wonder what they got themselves into.

If I Had A Hammer

Memo

 To:  Home and Garden TV (or Oprah, DIY TV, ABC, NBC, CBS, BBC or any other TV channel)

From:  Alysia, mom of three

Subject:  Reality TV show idea

Title:  Extreme Makeover – Special Needs Edition

Dear Sir or Madam,

I’m writing to you today to pitch my idea for a new reality TV show that I believe will be an instant hit.  It has all the elements of a great show – real families, dealing with real struggles until a team of superheroes comes along and helps put the family on the road to success.  I see it as a show combining the house remodeling magic of Extreme Makeover Home Edition with a bit of Supernanny mixed in.  But without the snarky comments or eye rolling.

My vision has a team of experts coming into the home of a family with a child with special needs.  You wouldn't surprise them, because that could be too overwhelming for the child.  Give a week’s notice.  Send a social story ahead of time explaining exactly what is going to happen.  Provide a video of previous renovations that the child can view over and over and over again on YouTube.

This wouldn’t be your ordinary home improvement team either.  Yes, you would have home building and renovation experts.  But you would also have a team member who understands that child’s special needs.  Maybe a behaviorist.  Or an occupational therapist, a neuropsychologist, a nurse, or a teacher trained in ABA.  Whatever the child needed.  That special expert would sit down with the parents and the child to figure out exactly what renovation changes needed to be made to help that family get through to the next day.

You see, there are families struggling all over the world trying to get services for their child.  Many of us can’t afford the therapies our children so desperately need, and certainly can’t supplement those therapies at home.  So many of our kids need special sensory friendly rooms and equipment and quiet places to recover.  Swings and trampolines and ball pits and quiet tents.  Places in their homes that are safe for them to play in and just be themselves.  Places where as parents we know they can be happy for a moment so we can get dinner on the table. 

Once that special team member assesses what the family needs, the home improvement team goes to work.  My vision is not to build a whole new house for the family (in some ways that might be more than the child could handle), but to make renovations to the family’s existing home or apartment.  It could be something as simple as finishing a basement to make it a therapy room.  Or taking one area of an apartment and using the space more efficiently to create a quiet zone. Perhaps adding alarms systems and deadbolts on all the doors so the child can’t escape at night.  The needs of siblings are examined as well.  The team talks with the brothers and sisters of the child with special needs to see what they would like and need. 

While the renovation is going on, the family is treated to a special day away.  A movie theater rented out just for them so they can have that experience as a family for the first time.  A restaurant closed down to the general public so they can have a meal together without the side glances and dirty looks from other patrons.  A trip to the park, the zoo, or the museum just for them.  When they return to their house, the team lets the family explore their new environment on their own, in their own special way.

At the end of the show, the family is presented with a special gift.  Instead of paying for their mortgage or college tuition, they'd get a year’s worth of speech therapy.  A new iPad with apps paid for life.  A nurse to tend to the child's frequent night wakings so the parents can get some sleep. Perhaps something as small as a handmade weighted blanket by Martha Stewart.

As for the target viewing audience, just think of this.  According to a survey by the Health Resources and Services Administration in 2008, 14% of US children had special needs.  That’s just in the United States.  Autism alone affects 1 in 110 children.   At some point in the too near future, everyone will know someone who has a child with special needs. A feel-good show like this will appeal to everyone.  Certainly more than “Sister Wives” or “Toddlers in Tiaras”.

There are opportunities for helping people all over the world with a show like this.  Just like each child with special needs is different, each week the show could be something new.  There would be a whole new awareness as to what it’s like to live with a child who has different abilities.  It would be inspiring, educational, and would make a difference in real people’s lives.

If you need a test family for the pilot episode, let me know.  I have a son with autism who could use a therapy room and equipment and some additional behavior therapy.  And his older brother would just love a Star Wars themed bedroom…

Anyone else want in?

"If I had a hammer,
I'd hammer in the morning,
I'd hammer in the evening,
All over this land,
I'd hammer out danger,
I'd hammer out a warning,
I'd hammer out love between,
My brothers and my sisters,
All over this land." - If I Had A Hammer by Peter, Paul and Mary

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 Try Defying Gravity and tweets about reality TV at @trydefyinggrav

To Raise

Mother-talk and rather cliche, but I will venture that both of my girls can fly. Cate flies in recognizable ways - her charm and wit take her up. She glides when she smiles and sings, when she reaches to bring others up with her. Her kind and encouraging ways are easy to identify, her curious mind is a clear signal of the intention to fly higher. She has grace of her own making, fueled by a willingness to challenge what doesn't seem just in the world. She leaves a jet stream of promise behind her.

People often miss her sister Addie's flights. They are looking beneath her, expecting her to stay on the ground, to need their help and patronization to move a few inches across the earth. But they are not seeing her, they are seeing what they expect of her. If those eyes were raised, they'd just catch Addie's little curly-toed feet carried up and away by her own power.

She fights for everything. She fights with a patient smile and retractable displays of interest. If you won't see her clearly, she refuses to see you. When she ignores those who expect little of her, it is taken as evidence of intellectual blockage on her part. And Addie lets them take it that way. In this, she takes wing. She flies too high for the underestimators to note. They are of no use to her.

Children of diverse physical and/or cognitive functioning are constantly evaluated, assessed, tested. Addie launches above this testing sometimes, deeming it out of context and irrelevant. Often, that is indeed true. She flies again. When she is not being tested, when she feels the faith someone has in her, when she trusts they will raise their eyes to meet her where she is; she delivers. Not an incremental piece of progress towards the goal, but a huge chunk of mastery that proves that even when we said "she can't," she clearly could, but chose not to. And we see this amazing and seemingly sudden feat as whole, not as small attempts. We give her a bigger wad of credit - a larger slice of belief-in-Addie pie - each time she chooses to unveil her potential for believers in these sweeping ways. Thereupon, she takes off again.

For us, her family, the metaphor of flight edges as close as it can to literal when Addie is in the water. She has a control in there that she doesn't have on dry land. Her composure is nearly regal, her wingspread strong and wide. When she lifts her head out of the water, her expression doesn't change - the dauntless beam from underwater rises with her, half moon eyes and cheeks dripping water and temerity. She kicks at us when we hold her in water too deep, small nudges to tell us that she'd like to try on her own. For a long time, we saw only what we feared. We did not let go as she asked, we did not let her try.

But we didn't know back then that she could fly.

Now we know. And as with Cate, my husband and I are just here to toss our girls up and honor their individual flight patterns. We stay on the landing strip to catch them, fuel and detail them during periodic stopovers, preparing them to ascend again. 

http://farmerjohncheeseandotherjoy.blogspot.com/

School Inclusion Can Happen After Hours Too

It can be difficult, as a special education family, to feel like a part of the school community.

Sometimes, if your child is in a self-contained environment, you don't get much of a chance to mix with many of the parents at the school. Even if your child is in a mainstream classroom, as mine is, there are still many factors at play that can keep you isolated.

Much socializing takes place at after-school activities—math night, science fairs, school concerts. These are the extra-curricular events that make a school community, that take school from being a place where kids go to learn to a place where families socialize. Even if you and your kids are accepted, these can still be extremely difficult to take part in as a special education family.

For a long time, I tried to go to all of these events. I would herd my three children to the back to school picnic and movie night and reading night and sweat and struggle to keep everyone reasonably well-behaved and prevent them from wandering off. Yet it seemed that the other parents sat, chatted, smiled and only kept one eye on their kids, who stayed right where they were supposed to.

I assumed that these activities were hard because I had three kids, but when I made jokes about what a nightmare the events were, no one else rolled their eyes as hard as I did. It wasn't until we had been at our elementary school for about three years that I realized that it was hard not just because I had three kids, but because I have special needs kids (two of whom have IEPs, making them officially special education children). 

My children are kids who get overstimulated, kids who can't handle the excitement and crowds at pizza night, kids with sensory issues. Plus, with three kids, if one of them freaks out, it's not so easy to cut and run.

It was hard for me to really truly accept that my kids aren't misbehaved at these events, but rather that they react to crowds and excitement in unexpected ways.

I first realized this at a bingo night late last year, when I had to leave two of my kids to walk the third in circles through the school halls to keep him from bouncing out of control. Armed with this realization, I was waiting to see what would happen at the open house that took place the Friday before school started this year.

The halls were full of students and their parents all trying to get to their classrooms and meet their teachers in a two-hour time window. My autistic son went from being calm and happy in the car on the way there to spinning and humming compulsively as soon as we were surrounded by a school full of kids and their families rushing around with manic energy.

I started to avoid these events. They were too much for me to handle by myself and sometimes too much even if my husband could attend as well. This was very difficult for my kids, particularly my oldest, who is extremely social and loves to go to evening school events. If he said he wanted to go, I took deep breaths, steeled myself and dragged my family to the school. If he didn't, I wouldn't bring it up and we would stay at home. As much as I like to meet the parents of my children's friends and as much as I like to get to know the other kids, it was just too hard.

Then, at one of the first after-school events of the year, I started chatting with another mom of a special education child. She agreed that it was too difficult and that her child had a hard time accessing the activities at the events. She told me about friends of hers that just don't come anymore because they and their children can't handle it.

While we tried to talk, I watched the circle of quiet children participating in the lesson and two of my kids fidgeting and getting up to walk around the room. I saw another mother trying to keep her daughter still and with the group. I could read the stress on her face and knew without having met her that her child was special needs as well.

Before I left that night (after my husband had come to collect my younger two children, who couldn't make it through all the events), I spoke to the teachers who had put together the program and I told them that we needed help. I told them that we want to participate, but that so many kids like mine just can't sit through a typical evening program.

To their credit, they ran with it. My school's math night was last week. It started with a pizza dinner in the cafeteria, followed by activities at tables set up in the hallways. Math night is usually a nightmare for me. This year, however, the special education team set up a special program in a room. They had activities for the kids in part of the room, while one teacher talked to the parents—and we were able to talk to each other—on the other side of the room.

The activities were specially designed for our kids, but perhaps even more importantly, we knew that no one in that room was going to judge us. No one would see our child crawl under a table and think we were a bad parent. Because we were in a room with one door instead of a hallway, none of our children were going to run off. I was more able to attend to the actual activity at hand than I have ever been able to in the past.

My children and I had attended the pizza dinner, and true to form, I was tense beyond words by the time I herded my kids into the special education room. Once I got there, however, I could feel the stress drop off of my body. My kids hadn't changed, they were still the sensorily challenged, impulsive kids they always are, but the environment had changed, and it made all the difference.

There is an argument to be made that putting special education children in a separate room doesn't help make them part of the community or even that it stigmatizes them. There is truth to that, but there is also value in increasing the special education community's visibility in mainstream schools, as well as giving special education parents a chance to meet and support each other. Not to mention that if the choice is between a special room or having to stay at home, the special room wins for inclusiveness.

These sorts of accommodations are easy to make if you have a school staff or a PTA willing to make them happen. All you need is a room, a couple of teachers to put together a modified program and some families who want to find a non-judgmental space. I know that I am so grateful to have found a school that wants to make my family part of the school community, and I am looking forward to many more inclusive after-school events.

Stimey writes a personal blog at Stimeyland; an autism-events website for Montgomery County, Maryland, at AutMont; and a column called Autism Unexpected in the Washington Times Communities. You can find her on Twitter as @Stimey. This essay was originally posted at Autism Unexpected. 

School Inclusion Happens After School Too

It can be difficult, as a special education family, to feel like a part of the school community.

Sometimes, if your child is in a self-contained environment, you don't get much of a chance to mix with many of the parents at the school. Even if your child is in a mainstream classroom, as mine is, there are still many factors at play that can keep you isolated.

Much socializing takes place at after-school activities—math night, science fairs, school concerts. These are the extra-curricular events that make a school community, that take school from being a place where kids go to learn to a place where families socialize. Even if you and your kids are accepted, these can still be extremely difficult to take part in as a special education family.

For a long time, I tried to go to all of these events. I would herd my three children to the back to school picnic and movie night and reading night and sweat and struggle to keep everyone reasonably well-behaved and prevent them from wandering off. Yet it seemed that the other parents sat, chatted, smiled and only kept one eye on their kids, who stayed right where they were supposed to.

I assumed that these activities were hard because I had three kids, but when I made jokes about what a nightmare the events were, no one else rolled their eyes as hard as I did. It wasn't until we had been at our elementary school for about three years that I realized that it was hard not just because I had three kids, but because I have special needs kids (two of whom have IEPs, making them officially special education children). 

My children are kids who get overstimulated, kids who can't handle the excitement and crowds at pizza night, kids with sensory issues. Plus, with three kids, if one of them freaks out, it's not so easy to cut and run.

It was hard for me to really truly accept that my kids aren't misbehaved at these events, but rather that they react to crowds and excitement in unexpected ways.

I first realized this at a bingo night late last year, when I had to leave two of my kids to walk the third in circles through the school halls to keep him from bouncing out of control. Armed with this realization, I was waiting to see what would happen at the open house that took place the Friday before school started this year.

The halls were full of students and their parents all trying to get to their classrooms and meet their teachers in a two-hour time window. My autistic son went from being calm and happy in the car on the way there to spinning and humming compulsively as soon as we were surrounded by a school full of kids and their families rushing around with manic energy.

I started to avoid these events. They were too much for me to handle by myself and sometimes too much even if my husband could attend as well. This was very difficult for my kids, particularly my oldest, who is extremely social and loves to go to evening school events. If he said he wanted to go, I took deep breaths, steeled myself and dragged my family to the school. If he didn't, I wouldn't bring it up and we would stay at home. As much as I like to meet the parents of my children's friends and as much as I like to get to know the other kids, it was just too hard.

Then, at one of the first after-school events of the year, I started chatting with another mom of a special education child. She agreed that it was too difficult and that her child had a hard time accessing the activities at the events. She told me about friends of hers that just don't come anymore because they and their children can't handle it.

While we tried to talk, I watched the circle of quiet children participating in the lesson and two of my kids fidgeting and getting up to walk around the room. I saw another mother trying to keep her daughter still and with the group. I could read the stress on her face and knew without having met her that her child was special needs as well.

Before I left that night (after my husband had come to collect my younger two children, who couldn't make it through all the events), I spoke to the teachers who had put together the program and I told them that we needed help. I told them that we want to participate, but that so many kids like mine just can't sit through a typical evening program.

To their credit, they ran with it. My school's math night was last week. It started with a pizza dinner in the cafeteria, followed by activities at tables set up in the hallways. Math night is usually a nightmare for me. This year, however, the special education team set up a special program in a room. They had activities for the kids in part of the room, while one teacher talked to the parents—and we were able to talk to each other—on the other side of the room.

The activities were specially designed for our kids, but perhaps even more importantly, we knew that no one in that room was going to judge us. No one would see our child crawl under a table and think we were a bad parent. Because we were in a room with one door instead of a hallway, none of our children were going to run off. I was more able to attend to the actual activity at hand than I have ever been able to in the past.

My children and I had attended the pizza dinner, and true to form, I was tense beyond words by the time I herded my kids into the special education room. Once I got there, however, I could feel the stress drop off of my body. My kids hadn't changed, they were still the sensorily challenged, impulsive kids they always are, but the environment had changed, and it made all the difference.

There is an argument to be made that putting special education children in a separate room doesn't help make them part of the community or even that it stigmatizes them. There is truth to that, but there is also value in increasing the special education community's visibility in mainstream schools, as well as giving special education parents a chance to meet and support each other. Not to mention that if the choice is between a special room or having to stay at home, the special room wins for inclusiveness.

These sorts of accommodations are easy to make if you have a school staff or a PTA willing to make them happen. All you need is a room, a couple of teachers to put together a modified program and some families who want to find a non-judgmental space. I know that I am so grateful to have found a school that wants to make my family part of the school community, and I am looking forward to many more inclusive after-school events.

Stimey writes a personal blog at Stimeyland; an autism-events website for Montgomery County, Maryland, at AutMont; and a column called Autism Unexpected in the Washington Times Communities. You can find her on Twitter as @Stimey. This essay was originally posted at Autism Unexpected.

Why I Celebrate Valentine's Day

In case you hadn’t noticed the explosion of red hearts, teddy bears, and chocolate that appeared at every grocery store, drugstore and mall starting approximately one hour after Christmas, today is Valentine’s Day. I know plenty of people, including my husband, who consider this to be a silly holiday, and I don’t entirely disagree. Nothing seems to bring out the bitterness in people, even those in loving relationships, more than Valentine’s Day. Although I’ve certainly heard my share of gripes about Christmas, New Year’s, Mother’s Day, and any other day with “Day” after it, Valentine’s Day seems to be the worst. Complainers assert that it is an invented Hallmark holiday, forcing romance with over-priced flowers and dinner at over-crowded restaurants. Isn’t it more important to let your loved ones know how you feel about them all the time, not just on one day in February? My husband, true to these convictions, does actually bring me the occasional bouquet of flowers for no special reason.

But I like holidays, the way they mark the passing of the year and give us reasons to celebrate even when there may not be any real occasion. And now, as a parent to young children, it is fun to see holidays through new eyes. At least I think it will be someday. My three year old autistic son doesn’t seem to understand or show much interest in holidays, and my one year old daughter is almost, but not quite, old enough to really get it.

Still, I buy the cards, dress the kids (and myself) up in holiday appropriate clothes, and help them celebrate the day. I don’t wear a teddy bear sweater or anything, but I may wear a red shirt or pink shoes. At my son’s school, the kids exchange valentines, and practice delivering the cards by matching pictures on the envelopes to the labels on special valentine holders they made. I enjoyed picking out and assembling the goody bags I made for the kids in his preschool class, all on the autism spectrum. The bag included a little heart valentine and small jar of bubbles, since special diets and allergies make baked treats and candy taboo. On Friday, my daughter (neurotypical, or, as I recently heard, “nypical”) received a bag of valentines at our Parent and Toddler class, including a couple of chocolate hearts that I have to assume were meant for me.

In all seriousness, I think it is important to expose all kids, but especially kids on the spectrum, to these things that people do, no matter how silly. I have no idea how much my son understands of these little rituals, but a big part of my job as his parent is to teach him how the world works. My daughter seems to just pick this stuff up by osmosis, absorbing knowledge as we go about our days, always seeming to understand what’s up. But my son needs more coaching. And honestly I can’t feel too bad about a holiday that celebrates how much I love my family, lets me give fun cards to the kids, and quite literally wear my heart on my sleeve.

And my husband usually comes through with those over-priced flowers anyway.

Jen also writes at her personal blog, Anybody Want A Peanut? You can follow her on twitter @wantapeanut.

Concert Night

Tonight, I'm taking my 17-year-old son to his first pop concert. We're going to see Miranda Cosgrove, of iCarly fame, and I suspect that he and his 19-year-old best buddy will be the only non-tween-girls among the fans. My guy has had a massive crush on Miranda for years, and is pretty excited that he'll be in the same room with her. Not sure if he understands that he's not going to be actually personally hanging out with her, but once we get there, I'm sure he'll be too overwhelmed by the loud music and high-pitched screams of his fellow audience members to feel too badly about it.

I remember the first concert I took my daughter to -- Aaron Carter, in a big outdoor arena. We were on the seat-free grass in the back, and even there the music was SO VERY LOUD that my daughter, rattled by the bass vibrations, actually sat on my lap and put my arms around her, something that she had pretty strong boundaries about under normal circumstances. That was a good concert.

Tonight, I just hope we make it through without one or both of the guys having to flee to the lobby. Concerts can be kind of an overwhelming experience, in a good way if you can lose yourself in the crowd and the music, in a bad way if you don't have the sensory skills or the emotional resiliency to handle noise and vibrations and jostling and crowd dynamics. I was a little surprised that my son's friend's mom let him come with us -- it's his first concert, too, and she's at least as overprotective as me -- and while I'm excited for them to have this experience together, being responsible for two young men with special needs in an unpredictable situation is a little daunting. 

But just now, my son came in, huge smile on his face, and said, "Today's the day I see my love." So that's the kind of thing that makes it all worth it. If he had a more organized mother, maybe I would have gotten online to buy tickets while there were still meet-and-greet tickets available, and he could have actually had a handshake and a photo with his fantasy celebrity girlfriend. Or maybe I could have pulled some special-needs strings, written letters about my special son and how much it would mean to him to actually meet Miranda. As it is, I got the tickets so late that I wound up being gouged by a broker and sent tickets that look like copies of somebody else's computer printouts, so the closest we get to the concert may be pressing our ears to the outside wall of the auditorium.

That's just my worry reflex, though -- most likely everything will go fine, he'll have his first concert experience, he'll be close enough to see his girlfriend but not so close that he actually has to put words together in her presence, both boys will have a memorable experience, and I'll be able to cross a milestone off the list. Wish us good luck tonight. And, um, hey, Miranda, if you're reading this, keep an eye out for the floppy-haired boy in Row P. He's way sweet on you.

 

Terri Mauro blogs at About.com Parenting Special Needs and Parenting Isn't Pretty. She has two terrific kids, a 20-year-old with learning and language disabilities and a 17-year-old with FASD, both adopted from Russia in 1994.

Being Heard is Totally Awesome.

Our local children’s hospital has a family advisory council that meets monthly and I’ve been a member of this council for a little over a year. It’s comprised of hospital staff such as nurses, child life specialists, social workers, and various management. The rest of the members of the council represent families that have children who are what we call “frequent flyers” at our hospital. The majority of us are dealing with several different clinics and therapies throughout the hospital. Our experiences really run the gamut of what the hospital has to offer and though we’ve all had difficulties that we’ve shared; we are not there necessarily to vent about past experiences, but instead to help improve the quality of care for all children. 

Last week our group was visited by nursing staff from the emergency department who were very interested in our input on their improvement project. They asked us a variety of questions that sparked over an hour of really interesting conversation and shared experiences. As I looked around the room and listened to the other parents in our group, it struck me that what we are going through with our children in that hospital setting matters not only to us, but to the caregivers and management team as well. In the year that I’ve been a part of this council, I’ve seen a question that I asked a customer service manager turn into a multi-disciplined committee set out to do mandatory training for all customer service reps hospital wide. I’ve been witness to the seriousness with which our questions and observations are taken. I can’t help but be completely amazed by it! This just hasn’t been the standard in any other business model that I’ve ever encountered.

Sometimes I think about the parents I’ve met in this group as well as my own situation parenting a child with special needs, and I wonder just how we’re all so willing and able to volunteer our time for months on end to this council. I wonder what motivates us to take that much needed time and go sit in a 2-hour meeting once a month and volunteer to be on improvement teams. I can’t speak for anyone else, but for me at least one of the most powerful things to come out of this past year has been the recognition that I’m being heard. People are asking the right questions, they are listening, and they want to provide the most family centered care in their setting as possible. And because of this, I’ve been able to take some particularly painful and awkward moments in that hospital and turn them around for myself, my child, and for other kids who will follow in our footsteps. 

America's Great Social Experiment

Rejoice!  Rejoice!  As of last month, the Burlington School District finally installed an elevator in the middle school.  “It took years of citizen advocacy and about $1.5 million, but Edmunds Middle School is now accessible to people with mobility issues” stated the local paper.  I don’t know that my daughter will ever make it to the middle school to use that elevator, but the ribbon-cutting ceremony was noteworthy.  Issues of mobility, inclusion and disability made it in the newspaper. Many residents, other than just school children, use the building where the elevator was installed.  The act of installing an elevator was not a simple gesture, but one of great symbolic importance to many people.  It was a public statement that including all types of people in our city's buildings is of great consequence.

Here in Vermont there are no designated “special education” classes in our school, so issues of accessibility are paramount.    I’m learning this as we have started shopping around for kindergarten for our twin daughters.  I’m still so old school, and expected that Sylvie would somehow be segregated from her peers in a special education classroom. Sylvie’s current educational team has been phenomenal in preparing us and the school district for Sylvie’s transition into kindergarten.  When we visited our local school during a recent open house, I was encouraged that the administrators and teachers knew we were coming and were prepared to answer our questions about accessibility. The school seems prepared to deal with Sylvie’s mobility limitations, and her own instructional assistant will be designated (read: will be found!) later this spring.  Right now, including Sylvie in the elementary school classroom is still theoretical. It’s worked well in pre-school, but let’s see how it plays itself out in a larger system.  As far as I’m concerned, the US public education has always been a bit of a social experiment.  And to integrate kids with disabilities into the classroom with “typical” students has both its dangers and rewards. 

A couple of weeks ago, after the public announcement of the new elevator, there was a showing of the documentary “Including Samuel.”  I didn’t make it to the film or discussion, but a friend of mine went who is particularly interested and committed to inclusion and diversity issues in the classroom.  He said that while the film was quite good, the entire discussion about “inclusion” was contrary—he felt neither welcome nor encouraged by what he heard about how “inclusion” was being framed.  In his mind, he imagined that issues of inclusion were not just focusing on disabilities, but also other issues such as race, class, nationality, religion and gender.  As a gay man who is also a single father, he wants to be an ally to people with disabilities and their families, but he felt excluded in the conversation!  So we all have our work cut out for us in the social experiment known as public education.  We need to remember that even though our kids are "atypical" there are lots of others who also need to be included. So far, I’m gamed to see how the experiment goes, so long as my children are not harmed in the process.

When Kirsten isn’t shoveling snow in Vermont,  she works as a professor of Communication Studies at the State University of New York and is the mother of 5-year old twin girls.