Sunday, January 30, 2011

Embrace the Possibilities

Last Fall my eight-year old non-verbal son with autism joined a local soccer league that supports children with challenges.  Okay, I signed him up and made it happen but up to that point I never even thought he’d kick a ball.  We'd tried through various therapies for years.  That was my limiting belief holding him back and this experience showed me when given the opportunity and the natural motivation to play, anything is possible.  

On the first day, the coaches evaluated his skills (which were basically the ability to move up and down the field) and assigned him to the team with the highest challenged teammates.  

That didn’t deter him one bit.

Each Sunday we packed ourselves into the car for our afternoon adventure.  We arrived open to the possibility of what may come.  The coaches and volunteers believed Ian would one day kick the ball.  They were so positive, supportive and encouraging and his father and I started to believe it too.

Ian would watch as the other kids moved up and down the field kicking the ball, often standing right in the mix of the action.  This created the desire in him to try, that internal natural motivation.  We weren't asking him to kick a ball just to see if he could do it, it was part of a game and play with other children.He could see the purpose of why kicking the ball was important.  I believe this was the key.  

On the fifth week, it happened.  He started intentionally kicking the ball and he kicked it all the way to the goal!  Not just once, but several times.  I whipped out my Flipcam and took the following video.  You’ll see Ian guided by his father with the volunteer close by. 

He may never be a top-level soccer player and I’m perfectly fine with that.  I will however continue to embrace all possibilities and not hold him back with my limiting beliefs because what if, just what if I’m wrong?


Ian kicking a soccer ball Oct 2010 from diane Hunter on Vimeo.

As a Mind-Body and Equus Coach, Diane Hunter helps parents reconnect with their inner guidance system to find a sense of peace and a deeper connection with themselves and their child.  She writes on her blog and to share her stories with others and share how to listen beyond words, open up to the power of non-verbal communication and find freedom from their physical and emotional pain.  On most days you’ll find her hanging with her two greatest teachers, her children, and her husband in their home in Los Gatos, CA.

Saturday, January 29, 2011

Fanning the Flames

It’s been such a difficult few months around here.  Between the holidays and all the angst they stir up, the start of a new school program for my son, new medications, new diagnoses, the consistent lack of sleep or very broken sleep…

As you might imagine, it’s been more than a bit overwhelming.  I’ve found myself going through wild mood swings and deep depression.  Grief and anger dance in and out of moments of giddy laughter and quiet tenderness.  The highs are so damned high and the lows feel even lower lately. I find myself, so often, feeling “on the verge” and it worries me. 

So, when an opportunity to do something out of the ordinary presented itself to me, I said a tentative “yes” to the universe.  Yes, brave and enthusiastic of me, wasn’t it? (sarcasm)  It took me a while to fully embrace the idea.  After all, it involves getting on a plane, leaving my husband and son on their own for nearly forty-eight hours, and allowing myself to be unencumbered by autism, by cerebral palsy, hearing loss, vision impairments, cardio-pulmonary or gastric issues which my son faces daily. It means SLEEP.  Well, at least, I hope it does.

And you know what? The anticipation of this event has been my lifeline.  I knew I was drowning and couldn’t seem to find a way to save myself.  But now? Now I will hold on to this lifeline with everything I’ve got and I will allow myself to be buoyed by the love and camaraderie of my friends in a way I seldom allow because my family needs me to be whole and happy and revitalized by things which have nothing to do with schools, doctors, lawyers or therapists.

They say laughter is the best medicine. If so, I plan to overdose this weekend.  I don’t think there’s such a thing as too much of that good thing, do you?

When was the last time you let yourself truly let go and do something just for you? Don’t be like me; don’t wait seven years —or even seven months— to rekindle your inner spark. 

Feed your fire.



Niksmom is allowing herself to feel a smidge more upbeat these days.  She might even be found blogging a bit more over at Maternal Instincts.



One of Riley's passions has always been cats. She's had two since she was four years old and she adores them. She has their every feature memorized.

When we found out Cats! was coming to Cleveland's Playhouse Square, we decided to get tickets and included Riley in the process. We looked at some of the pictures of the show on line.

"Riley, I think the cats actually come out into the audience during this show. Do you want to sit toward the front to see them, or would you feel more comfortable up in the balcony, further from the stage?"

"The balcony," she said decidedly.

Score! She advocated for herself and saved us money with her choice of nosebleed seats!

Thirty minutes before we were to leave for the show, she decided to change clothes. She put on black pants, a black shirt (borrowed one of mine, she's getting so big),black socks and shoes, and her kitty cat ears from an old Halloween costume. Then she asked me to paint her nose black, which I did, with eye liner.

We left for the theater.

It was freezing so my husband dropped us off under the marquee and went to park the car. In the lobby we stopped and looked at a Cats! poster. The set looked a bit spooky. Shuddering, Riley asked me softly, "Mom, do you think I can handle it?"

Cupping her jaw I looked her in the eye and said with confidence, "I do."

In the lobby, people pointed her out, stating how cute she looked in her cat ears. The ushers ate her up. Smiling, she bashfully looked down at her feet.

"I hope I'm not embarrassing you in this get-up," she said to me and her brother.

"Riley you are far from embarrassing me, you look absolutely adorable and out of all the people here you are the only one who thought to pay homage by dressing up. I applaud your creativity."

More smiles.

Turns out Cats! was not too much for her at all. She loved it.

There was a time not so long ago when I feared we'd never be able to go to the theater. A time when the sound of applause caused her to shriek in pain. A time when even Sesame St. on television was too overwhelming for her.

My plan is to remember this night, the next time I fear anything is out of her reach.


Michelle O'Neil's daughter was diagnosed with Asperger's several years ago. They've both come a long way since. More of their story can be found on Michelle's blog, Full-Soul-Ahead! 


Friday, January 28, 2011

Fixing Dad

Like a lot of guys I know, I fancy myself a problem solver. It’s how I keep order in my universe.  I’m uncomfortable with seemingly unsolvable problems, so I chew on them at night, turning budget challenges or scheduling issues over in my mind until I find the perfect workaround. 

So when Graham was diagnosed with autism almost six years ago, my inner problem solver went into hyper-drive.  In some ways that makes Graham lucky: I scoured the globe looking for the best ways to help him.  But, in other ways, looking back, I feel sorry for the kid.  Here he had this maniacal man following him around everywhere he went, strapping distortion lenses on his cute little face, flying him halfway around the world to specialists, making him do strange therapies, attaching electrodes to his little head to monitor his brain waves, and spooning supplements and other pills down his gullet.  Meanwhile, he was just trying to be three. 

Taking the long view, I guess we’re both lucky.  He has benefited enormously from our interventions (most of them, anyway), and I think I’ve finally been cured of my need to fix my child.  Some problems, it has finally occurred to me, aren’t problems.  Things don’t need to be exactly as I would have wanted or expected for them to be perfectly okay.  I arrived at this new place, ironically, because we found therapies that dramatically improved Graham’s functioning.  It’s like, when early therapies seemed off the mark, I became more obsessed with finding the right fix.  But when we found therapies that worked for him, but fell short of a “cure”, I finally realized that this child standing before me, with his quirks and his struggles, his uniqueness and his innocence, is just exactly how Graham is meant to be. 

This comes as an enormous relief to me.  The switch from obsessed fixer, to dad, tutor, coach, counselor, cheerleader and pal, is so much easier on both of us.

Being a problem solver is still a big part of who I am, but when it comes to childrearing, it’s important, I’ve learned, to balance the desire to help him be all he can be, with respect for the person he already is. 


Erik Linthorst’s award-winning film “Autistic-Like: Graham’s Story” ( will be coming to PBS stations around the country this April.


The Wonderful Thing about Tiggers

One of my favorite childhood books is "Winnie the Pooh".  I have read it many times as a child. I have read it to both of my children. I am inspired by A. A. Milne's ability to lovingly portray characters and their quirky attributes:

Eeyore, the introvert, with his slow pace and monotone voice.

Piglet, with his constant worry and anxiety.

And of course, Pooh and his eternal love of honey.

For each of Milne's characters, I can think of someone in my life who is similar.

Owl, the wise adviser, is my Mom, Evelyn.

Kanga, the consummate mother, is my sister Christine.

And Winnie the Pooh, without a doubt, is my son, Nicholas.

What I love most about Milne's writing, is despite the flaws these characters possess: anxiety, depression, nervousness, or obsession, each character is still lovable. Each character is valued. Each character is considered an important and unique addition to the 100 Acre Wood.

When I read, "Winnie the Pooh", I am reminded of my son, Weston. He is, of course, Tigger.

T.......I........double G.........errrrr!

In fact, I wonder if perhaps A. A. Milne had a son diagnosed with ADHD? These lyrics hold much clarity into the personality of a hyperactive child.


The wonderful thing about Tiggers,

Are Tiggers are wonderful things.

Their tops are made out of rubber,

Their bottoms are made out of springs.

They're bouncy, trouncy, flouncy. pouncy,

Fun, fun, fun, fun, Fun.

But the most wonderful thing about Tiggers is...

I'm the only one, Yes, I'm the only one!

I am the mother of two children diagnosed with special needs. Although my son, Nicholas, is diagnosed with Prader Willi Syndrome, a severe and devastating disease, it is my son, Weston who struggles most in navigating his way through this world.

Because he looks so "normal" and ADHD is not considered a REAL disorder, he is judged, scorned, disciplined harshly and outcast by the rest of the world. His hyperactivity, lack of social skills, and bouncy energy cause others to avoid him. Students, teachers, administrators and parents alike, often do not embrace Weston's unique personality. He is not valued. He is not understood. He often feels like he is an outcast. He feels like he is truly.......the only one.

I am struggling with Weston's transition into the middle school. I am struggling to enlighten his teachers so that they may embrace his disability and recognize that it is indeed real. I am struggling to get them to realize the importance of making him feel good about himself.

I think A.A. Milne had a vision of this world, a vision that created a world where everyone is valued and loved. Everyone is important, no matter how quirky, no matter how anxious, no matter how hyperactive.

A world that looks a lot like the 100 Acre Wood.

I think I will bring a copy of "Winnie the Pooh" to Weston's next IEP meeting. 


Tiggers are wonderful things!

 To read more about how we are coping with ADHD and Prader Willi Syndome, come visit our blog at:

Thursday, January 27, 2011


I’ve spent a good part of this month seesawing between bouts of anger and anxiety.

I thought about not writing about that and instead telling you all about how Oscar is happily playing in his school’s lunchtime basketball league and having a great time despite not scoring a basket, not always winning, and once getting hit in the head when he didn’t see a pass coming.

I wanted to mention that, instead of screaming and stomping away when his opponent stole the ball and played such tight defense that he couldn’t put up a shot, Oscar reportedly kept complimenting her. “You are really good on defense!” he told her over and over throughout the game.

I was going to write about the years (yes, years) of conversations and emails between me and his physical therapist, and more recently his aide and the school’s PE teacher too, about how to someday include Oscar, who has always loved to shoot baskets, in the lunchtime league.  I wanted to recount the way his physical therapist first started teaching him about sportsmanship back in kindergarten by purposely beating him occasionally in 1:1 games and how hard we work on that even now in fourth grade. I wanted to tell about my idea to reward him each time he overcomes an obstacle without arguing during a game, and about the PE teacher’s idea to stack Oscar’s team with compassionate and athletic teammates. About the plays his teammates devised to make sure Oscar gets the ball.  And about the PE teacher yelling “Offense!” and “Defense!” to cue Oscar who would otherwise get lost in the fast-paced game.  And most of all I wanted to tell about how I nearly cried when Oscar met me at the school gate after the first practice game, bursting with this news:

“Mom, it’s really fun! I’m gonna do it. I’m gonna do basketball league!”

But, despite this remarkable achievement and the numerous other ways in which Oscar is thriving right now, my inner state seesaws between anger and anxiety.

Most of my time this month has been spent combing through old IEP files, organizing phone and email logs, photocopying pages and pages, transcribing the tape of our most recent 2.5 hour long IEP meeting, and drafting a legal document that I really don’t have the expertise to write. I really shouldn’t discuss the issues involved but I can say that what angers me most about it all is the waste of time and money.  I don’t think the issues are really that disputed.  I think, instead, that the other party is so overwhelmed, understaffed and underfunded that they really can only respond to the most urgent issues coming in the door.  And the only way for us to get a response is to become one of those urgent issues.

My throat tightens and my limbs twitch when I think about the upcoming meetings and mediation sessions.  I’m livid about the inordinate amount of time this process consumes.  I’m wishing I could spend all day instead on the sun-warmed bench at Oscar’s school watching him shift his weight quickly from foot to foot, knees bent, arms low, standing between his opponent and the hoop.  She raises her arms to shoot and his hands go up too, but slowly. Too slowly -- the ball goes in. Oscar stays calm. He hears the call “Offense now, Oscar!” and hustles off to the other side of the court.


Mary's hoping that she can return to her sadly neglected blog Finding Joy in Simple Things now that the photcopying is almost done.

Get In the Pool


Last summer in our darkest of times as a family I began to use an analogy of a swimming pool when trying to describe the difficult parts of our family's journey and I wanted to share it here. I make specific references to adoption because that is the journey I have made but I hope the analogy itself might strike a chord with other parents of kids with complex needs as well.

Back when my husband and I decided to pursue adoption, we never expected it to be easy. Not at all. But there was no real way for us to know how very hard it would be until we had experienced it for ourselves. Throughout the adoption process we were told again and again that to do this, to bring an older child into our home from the foster care system, would be a huge leap of faith.


I now ( a mere 9 years later) envision the adoption process as a huge leap into a swimming pool. In the adoption classes everyone stands around the pool, during the home study process and disclosure you get your feet wet, and if you want to adopt after that well you better be willing to jump into that pool with your child, whether you know how to swim or not.


When we were presented the information about our son we did what we thought was due diligence, asked all the “right” questions and still decided to take the plunge. We jumped in the pool knowing that our son would not know how to swim, YET, but with the conviction that he would learn with us there every step of the way with him. We also, very naively, thought that if we needed services that we would just advocate for them and get them (seriously, try not to laugh too hard at me over that one - I had been working in Early Intervention for years and really should have known better). I wasn't even consciously aware that I had assumed those things until much much later in our journey.


But back to the analogy - after a while we grew tired holding our son up in the pool and we had to face the reality that he wasn't learning how to swim no matter what we did. So we called in more experts and they almost blew us out of the water when they told us he would never learn to swim. We grieved and reeled from this new information but we again refused to give up and called for more help.


We asked for back up but what we got was a bunch of people standing around the pool. They wouldn't get in the pool with us – some would go so far as to sit on the edge and get their feet wet and give us some helpful suggestions from afar and that would buoy us for a while. But most refused to sit, they would stand off in the distance and judge us and occasionally ask us if we were ready to give up and give him back.


People would come and go, occasionally we were left with no one on the side of the pool. A few times some amazing soul would come along and when no one was looking they would jump in the pool and it would feel like they were holding up part of my son even for a brief time. Then their boss would come along or it would be the end of their work day and they would have to jump out.


After many years our son got bigger and he grew frustrated by his own lack of progress. We no longer cared if he ever swam on his own, we just wanted him to be able to enjoy being in the water again. We also knew we needed more help. We needed to find other ways to accommodate him in the pool instead of us holding him. We began to look around. We yelled for help. People came back to the side of the pool, shaking their heads and wondering aloud how we had ever managed to keep him afloat in the pool on our own for so long. We calmly told them of our plight, we explained we couldn't do it on our own, we politely but firmly asked for help. They asked if we wanted to give him up, send him back. They wanted us to admit defeat and get out of the pool, leaving him there. That was the only way the system was designed to really “help” us.


We refused to give up or give in. We began splashing and making all kinds of noise. We blew whistles and got the attention of the people in charge. All the while though, I was beginning to drown. All those years of holding my son up had taken their toll. I could no longer do it, my body was failing me. Even as some wonderful people jumped in the pool and lovingly took my son from arms and continued where I had left off, I found myself very quickly and unexpectedly drowning. I couldn't even begin to tell others what was happening to me and I wondered later when I regained some strength how on earth so many really good and well intentioned people never recognized what was happening to me.


Then I read an article entitled “Drowning Doesn't Look Like Drowning” by Mario Vittone. The article is intended to teach people the true signs of someone drowning, which are quite different than what is portrayed in the media. I read the article and felt it reaching me on a whole new level that I am sure the author never intended. As Mario Vittone wrote:


"The Instinctive Drowning Response – so named by Francesco A. Pia, Ph.D.,  is what people do to avoid actual or perceived suffocation in the water.  And it does not look like most people expect.  There is very little splashing, no waving, and no yelling or calls for help of any kind." 


How many times is that us as parents? People look at us and see the “together” image we are trying so hard to portray but they don't see that inside we are actually drowning. We try so hard not to show any sign of weakness on our part for fear (and often times rightfully so) that it will mean people will not take us seriously and/or our child will not receive an intervention, treatment, funding or placement that we know they need. So even when we are unravelling, sobbing or screaming on the inside we dress nice, fix our hair, arrive early and sometimes even bring cookies.


We keep on top of referrals that need to be made, reports that need to be sent and IEP's that need to be created and revised. We deal with meltdowns, illness and messes at home. We cry at night when our children are in bed because during the day we need to hold it together. Because if WE don't do it no one will. We find the strength to wave our arms and call for help for our children. Often times though we cannot do the same for ourselves. We silently drown.


Truth be told, I would jump in the pool again for our son without hesitation. I don't want to make it seem as though this whole journey has been horrible. It really hasn't - there have been far more loving, touching, heart warming times but there are periods of time that are very very difficult and that is what I am writing about here. As my friend and fellow parent wrote to me “Yes there is an idealistic tropical paradise pool and there is also a shark scenario, but reality is somewhere in-between”.


As I continue to assist other families and work in our community to try to achieve real change to our services and practices, I find myself trying to pinpoint what some common “drowning” signs in families might look like. If we can inform and advise our families, professionals, services providers and community on what to watch for and how to assist, then perhaps we can put an end to parents drowning. At the same time, maybe we could make adaptations to the pool and hire trained lifeguards to get in the pool with us.



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


Wednesday, January 26, 2011

Siblings of special needs children have special needs, too.

When my wife and I found out we were going to have a second child with disabilities, we began a process of grief and loss for our middle child (2 yrs), who would now have another sibling not much different than her older sister.

While the process of grief is a tricky one, it is a process. Eventually, a time came when we realized that we’d have to find ways to separate our two-year old from the constant stresses of care giving for her two special needs sisters.

We started dreaming big dreams about the ideal situation, which included a house with separate wings, a care-giving wing and a family wing. We even dreamed about giving the two differently abled children their own house, complete with ramps, caregiver quarters and all the accessible necessities to make life easier, but separate from core family time.

At first, these dreams went against my every fiber, my every being of what I knew and understood a family to be - a core group of people supporting, loving, sharing, creating memories, etc. But as the reality of our situation with the two children with cerebral palsy (one severe, the other moderate) became a day-in, day-out operation, we began to need care givers to support their medical needs, which changed the entire family dynamic.

It was particularly evident, as our middle child required more one-on-one time with both of us. We started first, spending small amounts of time with her, taking her to story time at the library or taking her for a special lunch date, in between the many medical appointments we had with the other girls. These small glimpses into her world forever changed how I would view her future needs of mom and dad time.

Even though we have ‘socialized’ her at daycare two to three days per week, it became clear that she would need isolated time with mom and dad. Not only that, but she would need special time with her grandparents, aunts, uncles, etc. but not in the drop-her-off-so-we-can-get-time-to-ourselves-kind-of-way.

She would need mom and dad with her in our non-care-giving capacities so that we could give her the special attention that she needed - after all, she is at such a critical development stage.

The point is that it’s awful darn hard for us parents of differently abled children to make special time for those children who are able, who have many requirements that are special and who need our undivided attention at critical junctures -  as development and learning never stops.

It gives you all kinds of emotions, ranging from guilt to joy and everything in between, so making the decision to give a child their own special attention becomes difficult or never happens.

Having just returned from a short stint - a long weekend at Grandma’s house - with my wife, the family dog and with complete focus on my two-year old daughter, I can say with complete honesty that it will happen again, over and over, for as long as she will travel with us.

Sure, we all suffered from post-mini-vacation bliss, not to mention a very tough transition back to reality, but it was the best decision we’ve made, and the hope is that the benefits for her will far outweigh  any of those emotions that got in the way in the first place.

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 (


Tuesday, January 25, 2011

The Anatomy of Swinging

You start physical therapy at age 4 months of age. A therapist comes twice a week to your home to help you build your muscles to sit, crawl, walk, run and jump. You also see an OT therapist to build the muscles in your hands and work on your hand-eye coordination. At 8 months of age you see a vision therapist weekly to help you with your depth perception and your body-world coordination.

You spend hours every day working on therapy goals. Each toy you play with is therapy-based with physical goals in mind during the purchase. You spend weeks working on pulling up on the edge of the couch. You spend hours being tricked into bending over to build muscles needed for standing and walking without assistance. You spend weeks bending down to pick up rings and loop them over something taller than you.

Somewhere around 14 months of age your physical therapist brings over a walker. The silver, metal walker with 4 wheels that surrounds you in the back and you grip on the sides. It takes you a few weeks to figure out that it will not hurt you and in fact will delight you because you will find freedom in its glide.

You happily use the walker because you are mobile and you are standing so you can look your peers in your eyes. You put up with people staring at you using the walker but you don’t care. In fact, you kind of like the attention. You use the walker for months. Or for more than a year.

Your parents spend each day playing tricks on you so you stand unassisted. You reach up for something, realize you are standing and in a split second you go down to the safety of your bottom. Even one hand on something gives you stability, so for months you cruise holding onto whatever is hand height. Your OT still works on your hand gripping. Because that is vitally important in holding on when you swing.

You are 2 1/2 when you start to walk. You are three when you can walk outside the home (very nearly) safely. You are 4 when you can walk down a curb without hitting your face on the ground. You are 6 when you can jump with both feet in the air at the same time. This takes an incredible amount of skill. Years of therapy for you to learn to do it efficiently.

Maybe when you are 4 you start getting on swings. Your therapist and your parents tell you about 1,000 times over the course of the next 3-4 years to pump your legs, move them back and forth and that the back and forth movement have to happen at a particular time. So as they push you they yell out enthusiastically for you to move them back when you are on the upswing and out straight when you go the other way. But it takes years for you to understand what propels your body on a swing. But you still try.

Sometimes when the stars line up it works. We might start you out by giving you a push on the swing but then by chance your legs are in the right position and you move back and forth. You are so surprised when this happens and you scream, “I’m doing it! I’m swinging!” You don’t go very high, but that is okay because you really aren’t sure of the position and strength of the rest of your body so you don’t mind at all when you don’t swing as high as your friends or kids you see on the playground.

Then one day, nearly 8 years after you were born and 5  years after you start walking profiecently you are playing on a playground and then it happens. Your body is aligned correctly, the swing the right height, the weather isn’t too hot or too cold and you have enough energy to swing, swing, swing.

And that is the Anatomy of Swinging.

Julia blogs her family's story at Kidneys and Eyes and is co-founder of a social networking site, Support for Special She writes at Aiming Low and for various printed publications.

Monday, January 24, 2011

Living well within limits

Some of you remember Walker’s Gift, a BLOOM blog about a talk given by Ian Brown, author of The Boy in the Moon. Brown's son Walker has a rare genetic condition and significant disabilities. Ian talked about how doctors never addressed the central question of the meaning of Walker’s life: 

"It wasn't the keeping him alive or happy or from hitting himself that was most hard, it was that I didn't know what the meaning of his life was. Or whether he had an inner life. The most important question of all was about his soul. I don't know how you measure that in the medical world. That matters to the parent and it matters to the disabled child." 

I think many of us wrestle with the ‘why’ of our children's lives when their gifts don’t fall within conventional measures of success. And more importantly, with how we can ensure our child has a rich, and not diminished, life.

I’ve been reading The Four Walls of My Freedom, a memoir by Donna Thomson about raising her son Nicholas, now 21, who has cerebral palsy and is physically-dependent. 

Thomson introduces us to the Capability Approach, a model developed by economist and philosopher Amartya Sen as a way of looking at poverty. But Thomson applies it to life with disability. 

“The key idea of the Capability Approach is that social arrangements should expand people’s capabilities, or their freedom to promote whatever activities and lifestyle they value,” Thomson writes. “Sen argues that the central concern of having a decent and valued life worth living is that of freedom. It is not money and it is not 'accomplishments.' The approach examines the range of possibilities for human flourishing within a given set of circumstances, especially circumstances involving adversity.” 

Thomson shares how she aggressively pushed for surgeries for her son to relieve unbearable pain from a dislocated hip that kept him in bed. “I wasn’t ready to give up on an active future for Nick,” she says. When a second surgery doesn’t yield the hoped-for results, she has to acknowledge that she expected too much from doctors. 

“Now, I no longer hope for a future full of active verbs for Nicholas. I have accepted that he chooses to remain in bed almost all of his days because that is where he is most comfortable. Nicholas’ capabilities of being pain free and maintaining his dignity through choice and self-direction merge in his lifestyle nowadays. The German film director Werner Herzog once made a film about people with disabilities whom, he said, ‘experience the world on a very reduced level, but very richly.’ The riches that Nicholas enjoys are his friendships with his caregivers and with his friends and family.” 

Thomson talks about how human worth is bestowed through relationships. “The essential worth of another is received love.”

Sen would describe Nicholas' choice to stay in bed as an adaptive preference – a choice one makes in circumstances of deprivation when other choices aren’t possible. “Nicholas exercises his adaptive preferences by saying that he is no longer interested in events and activities outside of his bedroom," Thomson writes. "But Nicholas prefers to view this as anything but tragic. There may be an important game on television that he doesn’t want to miss, or a new computer game to try out. He chooses a series of interesting activities to pursue each day within the small sphere of his room, and he is happy.”

This drives home our responsibility to look to our children – not to common cultural perceptions – as to what brings happiness. “…it is part of our job as people who love someone who is very dependent to redefine happiness and achievement,” Thomson says. 

She notes that it’s challenging to measure the extent to which someone has a life they value. She shares an index she used to determine wellbeing in her family. Each member rates themselves in areas such as empowered to act; self-direction; harmony with nature; spiritual state; inner peace; play and fun; meaningful work; education and learning; beauty and creativity; community support; friendship; family relationships; and four elements of health. 

Although Nick doesn’t speak, he seems to communicate well through a voice device. I’m not sure how an index like this would be used when the person can’t express their thoughts well. 

Thomson goes on to call for a public/private partnership in supporting our most vulnerable citizens. “A fair trajectory for my caring years should not include me changing Nicholas’ diapers when he is 35 and I am 70.” 

I haven’t finished reading the book, and Thomson’s suggestions for public policy changes that will give people with disabilities freedom to choose the lives they wish are yet to come. For example, I skipped ahead and noted that Thomson suggests parents of children with severe disabilities should be offered a residential placement at age 15. If the parents choose to keep their child at home, they should be entitled to the equivalent care costs to be used in the family home. 

I am enjoying this book because I like the idea that we must redefine our notions of happiness and achievement to fit the needs, desires and values of our children. I’m still a bit fuzzy on how to determine what our children value most when communication is a challenge, and how to make it a reality given some of the big-picture barriers.

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

Saturday, January 22, 2011

Winter Blues

January is that difficult time after the holidays when it seems like the endless stretches of cold, bleak winter go on forever. (I guess it goes without saying I'm not a skier or a snow bunny of any kind.) You make your New Year's Resolutions and then hold out for spring as best you can. I keep telling myself that my tulip, crocus and hyacinth bulbs will be sprouting in just a couple of months. The mantra seems hollow and useless as the Artic blasts blow in causing frigid wind chill factors and snow drifts to mount. Yet, it is something I cling to as best I can. The winter blues and cabin fever really can be construed as ailments of the heart for some of us. I mention all of this because it is also a time when--invariably--the need to reassess my youngest son's mid-year academic progress comes along with the same warm fuzzy feeling as an icy kiss from Jack Frost himself. As if the let down from having to remove the tree and fight my son's desire to keep the pine carcass in the living room isn't enough of a battle. No, we have to add that special joy of seeing where B. is in connections to his annual goals. It's a time to reevaluate and reformulate. It's the time when the professionals who work with him try to remind me of where he's at. As if I needed that reminder. As if I need to have someone actually tell me in black-and-white that my son isn't like his typical peers. As if I would relish the news that even among the special needs children in his integrated preschool class he is unique--special among the special if you will. No, that's not nice, PC or even appropriate. It is however, honest. Brutally honest. Harsh and cold like some epic Nor'easter thundering down for the Artic Circle. I was away for work overnight when the "re-re-revised" IEP goals came home in my youngest son's backpack. Dad was here in my stead for the rare event of basking in the delight firsthand instead of getting an early warning from my clenched jaw facial expression. On the ride home I called to give him an ETA of my arrival. He drops the bomb, "Wait until you see B's new IEP goals." Really? Like I needed to hear that at that precise moment. It's like the weather person on your local station telling you that there is a major storm coming and you realize that you forgot to buy more milk, at 11:15 at night. So, we went through the new goals. The rage, the pain, the frustration, the overwhelming urge to scoop B. up and run away. My son is no angel, and he requires more patience than a saint has. His mother is not a saint--not even close. He has issues of all kinds: behavioral, developmental, social, physical, occupational, academic, attention and focus problems, etc. I get it. I know. They know. They have known for over 1.5 years. And yet like a snowball to the face, the chilling black ink on white paper is startling; it takes my breath away. I am the first to admit where he needs help and be quite realistic about his abilities and issues. These words leave me cold at the stark, bleak picture they paint with professional detachment. They also make the Mama Grizzly in me want to protect my cub and hibernate in a cave somewhere. (Preferably with heating and hot cocoa.) Shortly after that delightful reading my husband reminded me I had a post due. While it doesn't change the hurt and make the words any less painful, somehow typing my feelings does help. It reignites the spark and helps me know there are others who understand the frustration. There are others who have similar chilling encounters in their own section of the world and understand where I'm at. Why we can get so blue. Why the struggle sometimes feels like plodding through an un-shoveled sidewalk in a blizzard. And they also understand how to give warmth through shared experiences and similar journeys. Bundle-up and keep trekking; warmer days are coming. Hope is that fragile bulb deep inside just waiting for a chance to bloom.

Friday, January 21, 2011

A Monolithic Fear

During the long (long!) year-and-a-half (winter 2009 to summer 2010) when Carter was dangerously unstable, I ran.

I ran to appointments with therapists, psychiatrists, developmental pediatricians, and assorted other healthcare professionals. I ran to put out fires (metaphorical, except that one time). I ran to meetings at the school. I ran to pull Carter off of children/dogs/furniture he was trying to hurt. I ran to prevent Carter from hurting himself. I ran to keep up with the basic necessities of ordinary life in the in-between-crises times.

There wasn't much opportunity, with all that running, to think about how I was feeling. Not to say that I was OK; I most decidedly was not, and I knew it. I just didn't have the space to get all introspective about it.

In fall, 2010, when Carter began to stabilize (and that stability proved not to be of the short-lived, false-alarm sort), I was nearly overwhelmed with feelings that were jockeying to be acknowledged, understood, and felt.

Chief among those feelings? Fear.

Huge, hulking fear. Monolithic, oppressive, and relentless.

During my many sleepless nights in October, November, and into December, my thoughts ran on a loop, from fears about Carter's stability collapsing, to our financial future, to our ability to continue accessing appropriate health care and education, to whether or not the relationship and personal damage our family has sustained in the past few years will ever be healed.

Around and around I went, in a kind of a thought-rut, until I felt like I would never get a rest from my own thoughts.

Almost worse was the guilt I felt. How could I get lost in myself like that, when there was so much to be done? There were two years of neglected issues - the other kids, my marriage, the house, my medical needs - to face and wrestle to the ground. How could I collapse inward in the face of the one thing I had been working toward and dreaming of for so long: Carter's stability. How could I?

And you know what? I just did.

I just fell apart.

The harder I abused myself over falling apart, the worse it got, until the depression seemed impenetrable.

I think that, sometimes, I try to put on a brave front. Not because I'm noble or strong, and not even because I'm a private person (I am definitely not that), but because I am working so hard to avoid other people's pity. I say it's fine, we're fine, I'm fine, because I don't want people to make that face.

Somewhere in there, I started to pretend, not just for other people, but for myself. I forgot to acknowledge that this is seriously, massively difficult.

Because it is.

When I gave myself permission to stop trying to pretend I was OK, I started to be more OK. Sometime around Christmas, I got my feet under me again, and I've been slowly recovering ever since.

Sometimes I worry that I'll frustrate people with my frequent writing about this notion that we can't be OK until we acknowledge our decidedly not-OK feelings. After all, aren't we admonished, and often, to have a positive attitude? To look on the bright side? To keep our chins up?

Over and over again, I find myself stuck, and over and over again, I realize that I'm stuck because I'm trying not to feel what I'm feeling. Why? I don't know; maybe it's my nature, or my upbringing, or our culture. Probably a combination of all of those things. Whatever the cause, I have to acknowledge the dark and ugly feelings or I get stuck in them.

It was a long depression and I have aways to go before I am recovered, but I'm getting better. This afternoon, Carter interrupted me while I was reading to him. "Mommy? I think you're happier now. Your voice sounds happier when you read." I couldn't force that to happen. I had to breathe deep and wait for the waves of fear to crash over me.

And like magic, the tide went out and left me, shaken but whole, still myself, but wiser.

Wednesday, January 19, 2011

What Growing Up Looks Like

I used to be good at guessing the ages of other people’s children, but I think I’ve somehow lost that ability since Connor was born.   The little guy is in a preschool for children with special needs and there aren’t a whole lot of small children in our neighborhood, so I don’t see a whole lot of typical kids his age.  Every once in a while I’ll get to chatting with another mom at the playground or the grocery store, and we’ll discover our kids are the same age.  And I’ll take a look at their child and think “Oh.  So that’s what a four year old usually looks like.  Huh.”

It used to be that I could largely ignore the differences between Connor's development and that of typical children because the gap wasn't that glaringly obvious.  Now that he's almost five, though, that's no longer possible.  When you have a child who is still working on things like rolling over and eating solid food when most children their age are doing things like learning to write and memorizing their days of the week, I think there’s some necessary protective distancing that goes on in a parent's mind.  The differences between Connor and other children his age are glaringly obvious, and the last thing I want to do is make him feel inadequate or like I’m disappointed in him because I’m comparing him to other children all the time.  I don’t deny the fact that he’s different from other kids his age; I just don’t want to make that difference an issue.

I’m not consciously making a decision to isolate him from other children; actually we do tend to seek out other kids his age on the playground.  But children his age typically see Connor as much, much younger than he really is because of his tiny size and how he behaves, and so they engage him in ways that they wouldn’t react to their more typical peers.  He doesn’t seem to mind; in fact, he doesn’t seem to care right now one way or the other, as he’s still not really figured out cooperative play.  He’ll watch the other kids his age on the playground, but he expresses absolutely no desire to join in, and oftentimes he’ll actually pull back and refuse to participate if he’s included in a game or given direct attention.  He’s very reserved by nature anyway, and it’s only after six months or so that he will interact with the children in his classroom—let alone kids we meet in random encounters.  Sometimes I worry about how this will make him feel as he grows older, but he's perfectly happy and satisfied with the interactions that happen in his comfort zone, and I'm not going to make him miserable right now by forcing him to participate in cooperative play when he's not ready.

So on our occasional play dates with typical children I’ll try and set up some activity that everyone can do—like painting or sand table play-- and I’ll do my best to make sure that Connor gets to participate just as much as the other children, even if they might as well be on different planets for all he cares.  I won’t pretend that I’m not startled and secretly a little sad every once in a while when I hear another four year old make a joke or see them follow complex instructions with ease, but most of the time I’m able to shut that out and just see Connor for who he is: a kid making his way in the world the best way he knows how.

Just like the rest of them.



You can find Jess every day over at Connor's Song

Mother Wars

There has been a lot of controversy over here in the US lately over a recent Wall Street Journal article which lauds Chinese mothers over their Western counterparts.  You can read it here, if you haven't already done so.  The author presents her case that the Chinese raise such stereotypically successful kids, due to the strict upbringing enforced by Chinese mothers.  It has caused an outrage over here in the US, but I wasn't outraged, I was bemused.  Why?  Because I'm neither a Chinese nor a Western mother.  I'm a Special Needs mother, both alike and different to our cultural stereotype counterparts.

Some of us became Special Needs mothers before their children were born.  They learned while their child was still in utero that their child would have a disability.  For others, they didn't know until birth that their child was different.  And still others, like myself, had a child whose differences became evident as their development took on a different track.  Some chose to adopt a child with a disability.  Others struggle with coming to terms with the unsuspected turn of events that impacts every member of their family.  Some of us have incredibly supportive partners, others are going it alone.  We stay at home, or we we go out to work, our hearts always with our children.  It doesn't matter how different we are: we are the same, we Special Needs mothers.

And just as we are the same, we understand something that the Chinese mother who feels superior, and the Western mother who is outraged does not always realize.  Our children are different.  There is no one-size-fits-all strategy to raising our kids, even the ones with the same diagnoses are unique, and our approach to them needs to be just as flexible.  I've often heard the complaint that there is no manual for raising a special needs child.  I'm glad there isn't, it would be useless!  A strategy that works one day achieves nothing the next.  We are pragmatic and flexible.  We do what it takes for our kids to be happy, that thinking doesn't fit in well with any parenting ideology.  If you think that makes us pushovers, you should see us when our children are mistreated.

At times we have to push our children.  We take our children to hospitals and therapists when the look in their eyes makes us want to quit.  We can be as relentless as the Chinese mother in pushing our children towards our goals.  But our goals are different.  They might be to move our child into an inclusive classroom, or to be toilet-trained, or to bear their own weight for a few seconds, or put on their own clothes, or learn alternative ways to communicate, or recognize colors, or write their own name.  You give us a meaningful goal, and we'll work harder than any other Mother to achieve it.  And our pride in our children and their determination will exceed what we ever imagined it could be.

At times we are forgiving of our children.  The behavior that would shock anybody else often gets us labeled as permissive.  When we go to restaurants, it isn't just Chinese mothers who question our methods.  I am the mother who would reward her child for every bite of dinner with a cracker.  The sleepovers, and school plays, and playdates are celebrated as a success, not obstacles in the path to it.  Success is very different for Special Needs mothers.  It is the grace and courage we see every day in our children trying to fit into a world that wasn't made for them. 

We might not get to watch our children become piano or violin virtuosos, but we get to see the magic and wonder of childhood up close and in slow motion.  We get to be awed and humbled by the ordinary, every day.  Western parents tend to give up.  When it comes to our children, we will never give up, because they never do.  They would give up anything for their children, says Amy Chua.  So would we, even our dreams of what their future would be.  We give up our fantasy of motherhood.  Our reward is that our kids are themselves, not some projected image of what we want them to be.

We're irrevocably changed by our children.  We crusade to make the world more accepting.  All decent parents want to do what's best for their children.  We definitely agree on that one.  You won't find me saying that Special Needs mothers are superior to any other.  Our strength comes from reaching out, instead of tearing each other down.  Though we can be divided, there are places like Hopeful Parents where we can gather to support one another.  That is why we don't care if at times we are considered too strict, or too permissive, too demanding or too coddling.  We do our best by our kids.  As wonderfully, beautifully different as the mothers who raise them.  

Tuesday, January 18, 2011


I was watching Rojo play a football game in the basement on Sunday, when my cell phone beeped. “I’ve got food poisoning, I may not be in tomorrow – wanted to warn Rojo.” That was from his Resource Room teacher, who totally gets Rojo and gets that he does not do well with surprises, and gets that it’s better to let him know ahead of time that patience and flexibility may be called upon, than to spring anything on him.

“That was Mrs. R.,” I said. Rojo stopped his game, which is to say he stopped being the band, the ref, the coach, the players, and the fans. “She has food poisoning – she might not be at school tomorrow, and even if she is, she might be tired, so you will need to be flexible and patient.”

“Okay,” he said, then continued on with the SMU, Tennessee State game.

A few hours later Rojo’s aide texted, “I have the flu. I may not be at school tomorrow. I will text you later and let you know, and if there’s a sub. I just wanted Rojo to know ahead of time.” Again I filled Rojo in and gave him the Be Flexible and Patient speech. Again he said, “Okay.”

A little while later he said, “You know, I’ll just spend my day in the gym being Mr. H.’s helper if I’m not going to get the support I need.”

Done. He’d processed the whole thing, realized a day without his Resource Room teacher and aide was simply not going to work for him, and he’d moved on to Plan B. I don’t need to tell you parents of kids on the spectrum, what a big deal this is! Not to mention that he is able to articulate his need for support, and then find a different way of getting it when his first choice way doesn’t pan out.

It made me think about my own Plans A and B for support. My own ability to advocate for that support. My own ability to say, “Well, that’s not going to work for me, I’m going to need something else,” and my own ability to be patient and flexible.

I’ve got a ways to go.

Monday, January 17, 2011

the dream

Martin Luther King Jr, August 28, 1963


Last week, I wrote a post about my profound discomfort with the pervasive use of the word 'Retarded'. I told the story of how I had somewhat awkwardly - yet apparently successfully - asked a colleague to consider removing the word from his lexicon. I wrote that I had used the words of my nine year-old daughter to explain to him why I found its casual use objectionable.

I began that post by quoting Tim Shriver. In talking about the R word, he had once said, "But for our part, we are trying to awaken the world to the need for a new civil rights movement — of the heart."

And we are, aren't we? Day in and day out we are fighting for our children's most basic rights. We are fighting in our schools and our churches - in our communities and sometimes even in our own homes. We are fighting for appropriate education, access, recognition, opportunity, dignity.

Today we celebrate the life of a man who waged war against the brutality of socially acceptable bigotry. A man who refused to be daunted by the overwhelming task of challenging a deeply entrenched system - a system that institutionalized the denial of basic human dignity and respect to an entire race of human beings. A system that legitimized the idea that any group of people could somehow be deemed of lesser value than another.

Martin Luther King Jr changed our world. He empowered the disenfranchised to stand up and say, "No more." He educated those who had the power to change the order of things - to create opportunity for those who had been denied access to it before, to engender compassion in the hearts of their contemporaries and to find common ground among people who might have seemed to have had none. He created an army of advocates who saw that their true freedom would not come until ALL were free.

Martin Luther King Jr did not wage his war with weapons. He did not look to destroy, but to create. He worked not to tear down, but to educate. He sought not retribution, but justice.

He spoke in unvarnished truths and in so doing, he opened eyes and hearts to the horrors of racial inequality. He held a mirror to the nation and showed her the undeniable consequences of oppression. He brought light to darkness and hope to hopelessness.

Dr King famously dreamed of a world in which his children would be judged not by the color of their skin, but by the content of the character within. "Whatever affects one directly," he said "affects all indirectly. I can never be what I ought to be until you are what you ought to be. This is the interrelated structure of reality."

Despite his life's tragic end, his legacy endures as we strive toward the ideal of a society that truly values ALL of its members equally - affording each the opportunity to grow to his fullest potential, to contribute in her own unique way - to feel seen, understood, included and valued.

It is incumbent upon us - each and every one of us - to carry Dr King's message forward and to ensure that his dream is fully and unconditionally realized. It is up to us to speak our own unvarnished truths, to educate those who have the power to effect change, to enlist our own army of advocates, to build bridges and pave their roads with compassion and understanding.

It is up to US to create a world in which OUR children are not judged by their litany of challenges but by the depth of their humanity. It is up to us to show our society - as he did - that none are free until all are free.


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.


When I'm Sixty-Four

Tomorrow is my birthday.  I’ll be 39.

It’s not a big big birthday.  It’s kind of the birthday before the big birthday.

I usually take this day to reflect back on the past year.

But this year has been really difficult.  So instead of thinking of the past, I decided to look into the future.  Way into the future.  Twenty-five years from now to the year 2036, when it will be my sixty-fourth birthday.

A few months ago on Twitter, there was a hashtag label that read #tweetyoursixteenyearoldself (or something like that.  I’m still a newcomer to Twitter so I’m not sure I got it right). The point of it was to send your sixteen year old self a “tweet” of something you would want yourself to know from the future.  Things like “that guy says he loves you but he really doesn’t”.  Or “it’s not the end of the world if you don’t go to the prom”. 

I thought that for my birthday, I’d think of what I’d like to hear from myself 25 years from now.  In 140 characters or less.

So here goes.  #tweetsfrom2036

: Gray hair is really very chic now.  So you can stop coloring it.

:  You’re driving an Audi again.  The boys got the minivan.  Having the heated seats back is very nice.

:  #Autism insurance reform happened in every state.  All approved therapies now must be covered by insurance companies

:  Fed gov’t finally fully funds special ed mandates. Requires states cover their share.  No more fights at school budget time about special ed $.

:  You and Tim take the honeymoon you never had.  In Hawaii.  And you missed the boys more than you thought you would.

:  New “problems of living" DSM focuses on interventions tailored 2 decrease individual challenges, not categorizing people 1st then treating them

: Disorder “labels” now not required for treatment in schools.  If there’s an issue, schools work w/parents to set up appropriate services.

:  These changes brought about by your brother the psychologist, new chair of the APA.

: Apple donated millions of iPads and communication apps to needy families worldwide.  Steve Jobs became hero to #autism community.

:  New “tolerance” curriculum added to school standards.  All children taught about different learning styles and different abilities. 

:  And kids go home and teach their parents.

:  All the hard work, all the sleepless nights, all the sacrifices?  Worth it.  Because (1)

:  The three boys are doing great.  Beyond great.  And they take care of each other. Just how you taught them. (2)

Now tell me, in 140 characters or less, what you would like to know from yourself in 25 years. #tweetsfrom2036

"Will you still need me, will you still feed me,
When I'm sixty-four
?" - When I'm Sixty-Four by The Beatles

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 won't mention her birthday again on twitter at @trydefyinggrav

Sunday, January 16, 2011

Hope vs. Worry

I think about hope a lot, probably because I struggle with a hope deficiency most of the time. I'm afraid to hope for Lively, although he gives me a thousand reasons to hope every day. Part of me thinks, if you don't get your hopes up, it won't be quite so terrible if (insert worry of the moment here). As a purging exercise for myself, I will list my top 5 worries here now:

  1. Another stroke. We don't know why Lively had a stroke. Although we think it happened around the time of his birth, we can never be certain. And since we don't know why it happened, we can't know that it won't happen again. We do know that although he had a stroke, Lively was able to eat and drink like a champ until he was 9 months old, and now he aspirates thin liquids and some purees. Why? No one knows, and no one is really pressing the issue (other than Pete and me). My worry? Another stroke.
  2. Recurrent infantile spasms. Lively had about 6 months without any seizures, and then about a month ago, they came back. They don't look like the infantile spasms. Well, they look like part of a spasm: Lively jerks his eyes up and to the left. But there's no limb-jerking, and they don't seem to be progressing. I notice at least one almost every day, some days more, some days none. We have an EEG scheduled in April, and we've increased Lively's Keppra, so the EEG should tell us if the spasms are back, or if he's *just* having partial seizures.
  3. Life-long, uncontrolled seizure disorder. He's at high risk because of his stroke and infantile spasms.
  4. Autism. There is a high incidence of autism in children with infantile spasms. Lively is very speech-delayed and doesn't always engage like we want him to. I wasn't really worried about autism for him until a PT expressed her concern by saying, "he's really in his own little world, isn't he?" and I started reading some things and got worried.
  5. Aspiration. Lively gets most of his nutrition and all of his fluids through his g-tube right now. He continues to aspirate, and it doesn't seem to be improving. Will he ever be able get rid of the tube? Don't know.

There are more, but gotta stop somewhere.

I've asked myself, what would happen if I just started to believe that everything is going to be fine with Lively? He has given me lots of reasons to hope. He crawls, he cruises, he will walk across the room holding just one of my hands. He is happy! For a long time, he wouldn't eat anything at all, and now at times he will eat 4 ounces of food 3 times a day. He has a bright, happy smile. He gives hugs and kisses.

One lesson I learned by being Lively's mother -- I can't prepare myself for having a sick child. Knowing ahead of time would not have made this experience easier, so not getting my hopes up isn't really protecting me at all. I might as well hope for everything for Lively: perfect health, "normal" development, eating and drinking by mouth, school, sports, musical instruments, dating, college, marriage, children of his own. Not hoping for these things isn't going to make it suck any less if he doesn't get them.

The trick, I think, may be to live in the present. Lively is doing really well right now, so I wish I could find a way to be happy about that (which I am) without always looking a step or a year or a decade into the future (which I can't). This may, in fact, be the secret to happiness in general: enjoy today, celebrate the child I have today. I do celebrate him. The future-worry, I'm afraid, might be an unavoidable part of motherhood.

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


Chatting it up, hoping she is not distracted by the venue, I stumble over my own trepidation.  I have not set foot in this building for what feels like a full lifetime, but is only a few years.  Back then, Addie and I would make our way to the door each morning, greeting the few other students that came on the bus, ready for a short few hours of “school."  Addie attended here where she received early childhood special education services from age 3 to about 5.  A small, self-contained classroom with more adults in it than children - it was our only option back then.

We return to the building today for a Girl Scout field trip.  The self-contained classroom and all its services are long gone from this place, inclusive preschool options throughout the community having rendered the old program housed here obsolete.  Today we bring our Girl Scout troop of 34 girls to one of the larger rooms in this empty school for a dance/exercise class called Jazzercise.  I had a half-valid reason for not joining the carpool, for driving by ourselves.  I think the other half had to do with not knowing how either of us would react walking into this building, not knowing what else we might be revisiting.

Addie seemed to slow her step as we crunched the snow underfoot on the path to the front door.  She surely recognized it, remembered the bunny they used to have in the office just inside the door.  As we crossed the threshold, I remembered her picking up tiny loose tiles from the entrance floor and trying to sneak them into her mouth.  Pica.  It was horrible for her back then – paper, twigs, ceramic, cotton, book bindings, erasers, gravel, sand…anything.  She’d eat it all.  My gut tightened as I recalled layers the vigilance and worry just owing to pica that complicated everything back then.  Today, Addie stomped her boots onto these tiny tiles and left them lie, even the loose ones.  Pica is no longer the challenge it once was.

Just inside the door the bare open area where we waited for teachers had scarcely changed.  There was a table and a few chairs that weren’t there before, but the smell of damp carpet, paste, and the bathroom up the hall remained the same.  Addie paused, definitely recalling this place from some time in her life.  She chose not to sign or use her communication device to share with me any observations or questions.  She told me in other ways that she recognized the surroundings.

Following the signs to our destination, we walked down the hall opposite of the one where her classroom was.  When I turned and looked back down that old hallway, the brunt of those days came full swing.  I had to stop and remind myself that the truths of those days are not today’s truths.

When this building was part of our every day, I was consumed with an obsessive pivot between worry and feverish research.  I danced between the emotional reaction and intellectual reaction mentioned in an earlier post here on Hopeful Parents.   I would spend the time she was at school sifting through books and websites, making phone calls, setting up appointments, and then seize upon the teachers at the end of her half day to ask countless questions.  My manic activity surrounded two constant queries at that time:

1. Will she ever talk?

And –

2. Am I doing enough to help her?

The weight of that consuming preoccupation landed squarely as I looked down that hallway.  Back when Addie’s name was on one of those lockers, I really thought all would be lost if my child could not speak.  I could not fathom a relationship of any kind with her if we could not exchange information, thoughts, and feelings in verbal/audible ways.  What about a relationship with her sister and dad, the world beyond? Worse still, I believed that I had some control over whether she would be verbal or not, as though if I just got her the right tools, the right professionals, the right exposure, she would one day be able to articulate with her mouth what is in her mind.  And if I missed a tool, an exposure or a language development methodology, well then.  It would be my fault that my child’s thoughts stayed locked up inside.  It would be my fault that she had no reciprocal relationships to speak of.  Her lonely isolation would be on me.

How damagingly cocky and wrong I was to believe I had this kind of power, to believe that being non-verbal is synonymous with being non-communicative, to think that isolation was the only alternative for my non-speaking girl.  Today as we arrive at the room that will hold the energized and action-packed Daisy Scout Jazzercise class, my face warms, hot tears roil in my throat.  I shake imperceptibly in tamped down rage at those full years of erroneous thinking and acting.  I begin to calculate what that mistaken approach cost my darling girl back then. 

But the absorption of those past years is knocked loose as someone calls out “C’mon Addie, come by us.” The girls take Addie’s hands in theirs and call back to ask me to bring her communication device along. Someone has already helped Addie take off her boots and coat and she sits among her friends, waiting for the Jazzercise instructor to begin.  Addie signs "sit down" to another friend who takes the suggestion, sitting nearby.

After a moment, Addie notices a mirror at the back of the room and scurries to it.  She sits in front of it signing things I cannot see.  I take her communication device over to her.   She navigates her pages and tells her reflection “I am a Daisy Girl Scout.”  A friend comes over and sits in front of the speaker of the communication device so I cannot hear what Addie says to her next.  But it’s something that makes her friend laugh and ask follow up questions.

Moments later the class has begun, the music is loud and there is constant giggling with intermittent screams of delight.  The girls hold hands in a circle, rowdy and swift as they change directions walking.  Addie’s balance is not the issue it usually is. Rather, her friends on either side know her well and know how fast to go so she can keep up and join in.  She stumbles once and the instructor rushes to help her up – over-help her, really - the anxious approach of someone assuming Addie's cognitive and communicative differences also imply fragility. But Addie’s friends stand between her and the instructor, allowing Addie to get herself up and get back into her place on her own.

Because it’s her place.  She got it herself and she will hold on to it herself.  Her place among friends.

Saturday, January 15, 2011

Where There's Smoke, There's Fire

My oldest son is smart, funny, social, engaged and doing well in school. I also have a sneaking suspicion that something is going on with him, that he has some sort of "issue."

I don't know what I think it is. I've considered anxiety, an intolerance for frustration, executive function issues, a learning disability that is just starting to rear its head and also the possibility that he is a completely typical nine-year-old who is just kind of a jerk every once in a while.

Because my middle child has autism, I have learned a lot about these different ways of being. Often when I am reading, I will discover something that fits my oldest to a tee. I have spent a good deal of time in the past couple of years wondering if I should intervene somehow.

I also understand that med students are hypochondriacs and that a little knowledge is a dangerous thing, but every time I start to question myself on the fact that something is going on, I think back to a panel discussion I sat in on about a year ago.

At that conference, a man whose whole business is providing evaluations spoke about his experience with taking a harder look at kids like my oldest. He said that although school districts tend to dismiss parents of students like mine, the parents' instincts are usually on target.

"Where there's smoke, there's fire," he said.

It has taken a long time for my husband and I to get to the point where we were ready to have an evaluation done on my oldest son, but we are finally there. We decided to go the private route for his evaluation. Never for a second did I think that the school would do anything other than laugh if I told them I thought he needed to be evaluated. His teachers see him as a model student—and he is.

But that kid has some explosions at home that seem far outside the realm of reasonable. Then again, I've never had a nine-year-old before, so maybe they are perfectly reasonable. (See how I second guess myself?)

We finally talked to a psychologist and I listed every reason why I thought he needed to be evaluated. The psychologist, my husband and I agreed to have my son evaluated. We scheduled the appointments and left for a month, while we waited for evaluation week to roll around. 

During that month, my son has been an angel. He has been delightful, helpful and not had any blow ups. I started to not just doubt that there was fire, but that there was smoke at all.

Then a couple days before his first appointment, I told him that he was going to miss half a day of school to go to the evaluation. That kid panicked. He started screaming. He started to list all of the things he was going to miss and how that was unacceptable. He tried to bargain into another option, and then he ran out of the room sobbing.


We are mid-evaluation now and I am very interested to see the results. I figure that the best case scenario is that we waste a ton of money and have a paper that says, "Your son is perfectly typical," that I can look at whenever I have doubts. The worst case scenario is that we discover that something is going on with him and we figure out how to help him deal with it now rather than when he is 30. That doesn't even sound like that much of a worst case. I think the real worst case would be leaving him with an issue that never got discussed or diagnosed.

I have spent so much time doubting myself and questioning whether something is going on with my son. I am so glad that phase is over. I feel peace now that we are taking action to find some answers.


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. She believes rodents are funny, autism may be different than you think, and that if you have a choice between laughing and crying, you should always try to laugh—although sometimes you may have to do both.

Friday, January 14, 2011

Life Goes On

"May you live in interesting times." --Chinese curse

I’ve been having a bit of writers block. Sure, I’m able to churn out regular posts on my personal blog, where I can get away with rambling on about that one little thing my son tried to say or do, or how cute his curly hair is, or how my little girl is growing up so fast. But when I write for other people, especially places where I contribute only periodically, I try to make my words count a little bit more. I put in the effort.

But now that the holidays are over, and we’re back to our routine, there just isn’t that much going on. Moe goes to school every day, and some days are better than others. Once a week we have occupational therapy, and another day we have music therapy. When Moe is in school, I take my daughter to gym class, or music class or mommy & me. Other days, like today, Moe has a cold and stays home.  Some nights Moe sleeps easily and other times he’s up, but even that is becoming part of the routine.

Our days have a rhythm again, a predictability that although sometimes bores me to tears, is easy and comfortable. And when you have children, especially a child with autism, easy and comfortable is about the best you can ask for. It allows Moe to focus on learning and growing, without being distracted or overwhelmed by lots of new stimuli. It allows me to do the things I need to do to run a house, like get the laundry and grocery shopping done, things I used to take for granted until I had kids. I can focus on the kids when I need to, and even have a little time for writing. And when we do have a difficult day, I’m able to at least begin to figure out what happened and how we can make things better next time.

So even though some days the most interesting thing in my day might happen on twitter, I’m not complaining. Boring is good. It just doesn’t make for great blog posts.

Help keep my twitter life interesting. Follow me @wantapeanut.

Thursday, January 13, 2011

5 Principles Of Communication

The Doctor is in, more good advice from Linda Edelstein P.h.D.

~ Very often, when people come in for couples counseling, one of the first things that they say is, "We just don't communicate." Communication isn’t magic.  When you see someone do a dangerous trick on TV, they follow it up with, “Don’t try this at home!”  Well, DO try this at home.

Communication is “the process of exchanging information” and can be improved.

             Here are 5 basic principles:

  1. In all relationships (family, work, love), communication never stops.  It is always there, so don’t bother to fight it.  Instead, pay attention and get good at it. You are always sending and/or receiving information.
  2. Communication can be verbal (messages sent through words).  Communication can be nonverbal (messages sent by actions or inactions).
  3. When you have a negative message to send, it is best to send it consciously and verbally than carelessly and nonverbally.  Communicating with words allows further, useful discussion.
  4. Communication can be simple and overt (“I am going to feed the dog”) or it can be more complicated (“I am going to feed the dog” accompanied by frown, groan, slamming the dog food on the counter, or announced when you in the middle of an argument).
  5. Communication is always edited and that is okay.  No one says everything that is on their mind and that’s just fine – it is civilized.
  6. Poor communication is not a personality problem (usually) or character flaw.  If you work at communication, you will get good at it.

Pay attention to these 5 ideas and see if it helps.  Let me know what you learn.

Many of these ideas came from a 1987 pamphlet prepared by Richard B. Stuart and Barbara Jacobson. It just proves that helpful, basic ideas are still worth remembering.

32 IEP Meetings and Counting

I had it all planned out that today I would write about my son's IEP meeting yesterday ... except it snowed, and the meeting got rescheduled for tomorrow, and now here I sit without a topic. This will be my next to last IEP meeting, close to the end of 15+ years of advocating for my daughter and son. Of all the bittersweet transitions that come with your last child graduating high school, IEP meetings are one thing I will. not. miss. I'm relieved that my son looks ready now to continue on to college rather than remain at the high-school for all his extra IDEA-promised years, because friends, I need to get off the IEP train. I'm done. I'm fried.

I haven't even really had a terrible time of IEPs. There was one very unpleasant meeting when I wanted to push my daughter from self-contained into inclusion, and the team yelled and I cried and though I finally got my way things were never cordial again with that group. There were a few meetings where a case manager made it really clear that I needed to be "handled," and I "handled" her right back. There have been years when I've gotten along great with the team and sort of took over, which is certainly better than being steamrolled, but short of the sort of professional "Let's all bring our best resources to the table and share all our good ideas" that's ideal but elusive. 

In high school, the meetings have been generally agreeable but super-quick; the case manager holds them in her smallish office, with people popping in and leaving and the clock ticking throughout. I've taken to talking with anyone I want to hear from and strategize with in advance so I can present a consensus without having to actually discuss things onsite. It works, but it's work.

Even the best meetings are stressful, yet it's the stress that leads up to them that really gets me. Will something unpleasant get dropped on the table? Are they plotting some big change? Is there something somebody's not telling me? Has there been a policy shift that will affect my child? Are the good grades my child has been getting just a polite smokescreen hiding lack of progress? I interpret every letter, every phone call, every e-mail, every nuance of speech with school personnel; I have angry impassioned conversations in my head about issues that never, never come up in real life. My blood pressure is skyrocketing before I even set foot in an office, and even if the meeting is anticlimactic, I'm exhausted.

I don't know if parents of typical kids can ever understand what it's like to maneuver a kid through a successful program of special education. For most parents, getting your kid through school is like rolling a marble from one end of a room to another -- you can put some spin on it, it can get there faster or slower, it might hit an uneven patch of floor and veer a little off course, but basically, once you start it rolling, it's a straight shot to its destination. Getting a kid with special needs through school is like manipulating a marble through one of those mazes where you have to keep tilting the surface one way or another, madly turning the knobs, steering away from holes, backtracking from dead-ends, never able to rest lest your marble roll back to the starting point. I'm getting near the end of that maze, my wrists are shot, my eyes are crossed, I'm seeing holes everywhere, just gotta get that marble ... a ... little ... further. So close.

Wednesday, January 12, 2011

Finding Time

Life is busy.  Most people I know have a calendar full of appointments and just finding a day/time to get together often requires us to both look at our calendars and pick a day somewhere in the future where we both have some time.  

My life was busy before I had children, busy after I had my first daughter, and then really heated up when I had Emma.  As many of us know, the early days of diagnosis and treatment are a bit of a whirlwind of activity mostly spent making appointments, going to appointments and talking with the insurance companies!  As Emma turned three in the fall and her many appointments were more streamlined because of her school schedule, it seemed like we were finally starting to take back control of our schedule.  And, I have to admit, it felt wonderful - for the few weeks it lasted before we headed into the busy holiday season!

This Christmas season my husband and I decided that we did't want to go back to our over-scheduled life.  We had enough of running around.  Enough of weekends fully scheduled for months into the future.  We decided to focus on freeing up some time to make impromptu decisions on what to do on any given day.  We both accepted some and declined some invitations to holiday parties and spent more time as a family of four - playing, watching home videos, making crafts, reading books. It was the most relaxing, fulfilling holiday season that I can remember.  And it brought us into the New Year with a sense that we had managed to take better control of our time and we were able to see how much the girls blossomed with large blocks of unscheduled time.  

We are making an effort to manage our time better this year and to make spending time as a couple a higher priority.  The truth is that the girls love some time away from Mom and Dad as much as we enjoy a bit of time alone together.  We are fortunate that one of the babysitters we love is available this Winter/Spring semester of college and is really excited to spend a few hours a week with the girls while Chris and I have a date night - something we've neglected for far too long.  

Our first night out happened this week and it was a wild success!   Chris and I were able to spend a few hours reconnecting without worrying about the girls or the evening bedtime routine.  Emma, who is a bit finicky about letting others watch her and can manage to scream and cry for hours if we leave her, was happy to have her babysitter back and laughed and played most of the time we were gone.  The lone exception was when she was put down for bed, but even then she only cried a few minutes!  We are all set to enjoy our Monday night date nights this semester while we have a babysitter available.  As my husband said, Monday nights in January never looked so good!   

This is how our family is working to find more time together.  I'd love to hear how others are managing to find time in their lives because I'm sure our plan will require frequent changes as the year progresses.  

How do you cope?

We’ve been experiencing really dramatic highs (Ethan’s new school) and equally dramatic lows (Ethan’s head-banging, hitting, and refusal to wear his cochlear implants) lately. I’m so glad we’ve got the positive stuff happening to help create some semblance of balance, otherwise I might have gone mad by now. I feel like I've been on this ride with my son and I just want to get off. I know he'll be a passenger for many more years, but I'd like to just stand a few hundred feet away and watch him, rather than experience the spiraling emotional ride in the seat next to him. 

Speaking of my mental health, I recently started seeing a therapist. It’s something that I’ve always wanted to do, but for some reason I've seen it as somewhat of a luxury, something that only rich people do. I’ve had a really tough time emotionally this past year and finally decided that one of the best parenting moves I could make was to start helping myself with some of that same gusto that I help my son. So far, it has been great. She asked me an interesting question on our first meeting: Do you think you approach your situation with a special needs child from an emotional or an intellectual point of view, or a combination of both? I’m not really sure why she asked, perhaps just to get some clarity on how I cope, but it certainly was interesting to think about.

When we got Ethan’s initial diagnosis of hearing loss, followed by his diagnosis of CMV, I instantly went into research mode. I joined several Internet groups and started voraciously reading blogs. Then we found out about his GI issues, apraxia, and eventually autism. I continued to bury my head in books and the online communities for help and support. So I guess I’d say that I’ve taken the intellectual approach, and that one of the reasons I’ve been feeling so down lately is because that approach finally became tiring and now I’m absorbing a lot more of this on an emotional level. As you probably know all too well, it’s a lot easier to tear through books and information than it is to face a broken heart. I’m glad to have found a good therapist, one that specializes in working with families like ours, to guide me through this stage of realization and grief. And I’m tremendously grateful for those of you who blog about your lives, and for Hopeful Parents, because knowing that I’m not alone on this exhilarating yet terrifying roller coaster ride makes all the difference.