Sunday, October 31, 2010

Hopeful Parents Blogging for Awareness

We want YOU!

In honor of National Family Caregiver Month and National Blog Posting Month, Hopeful Parents would like to invite all parents who blog about their kids with special needs to share your experiences with us. Every day of November, we'll link to the post of your choosing from our home page.

Tell us what it feels like to raise your child, how it affects you, what it does to your marriage and your relationships, how your family has changed, what's good about it, what's hard, who you admire, what makes you get up in the morning, what makes you want to pull the covers over your head.

Participate once, or participate every single day of the month. Either way, we want your voices to be heard loud and clear!

Participation is super easy:

1. Starting tomorrow, November 1st, write a blog post and copy the link to that specific post.

2. Paste the link to that day's Hopeful Parents Blogging for Awareness post. (Hint: check our home page. Starting November 1st, there will be a new Blogging for Awareness post each day.)

3. Link back to Hopeful Parents either in your post or on the front page of your site. We want you to help us get the word out! For those of you who like badges, feel free to use the badges and codes below.

That's it. Simple, right?

The only rule we have is that you must be a parent blogging about your experience: no advertisers, no therapeutic providers, nobody but family caregivers. It's National Family Caregivers Month, after all!

And now, for the badges. Copy and paste the code next to each badge to place on your site. We're looking forward reading your posts!


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Saturday, October 30, 2010

Driving Off A Cliff

One night recently, I dreamed I was driving my car on a freeway and the road dropped off into a huge void.  I didn’t touch the breaks, but plunged straight off the edge at full speed.  I looked over at the passenger in my car and we both experienced a sense of terror not knowing what would happen when we hit the ground at least fifty feet below. 

As I drove us off the cliff, the ground disappeared leaving what felt like endless space below.  We flew effortlessly through the air.  I resigned myself to the unknown and felt a peace wash over me.  When the vehicle landed softly as though landing on a soft, fluffy pillow I thought, “Hmmmm, that wasn’t so scary, nothing to fear here.”

As Franklin Roosevelt said, “There is nothing to fear except fear itself.” 

In the dream, my passenger and I continued on our journey looking for the way home.  We pulled into a gas station.

“I’m lost and I’d like to buy a map.”  I said to the woman behind the counter. 

She looked at me calmly and replied, “Honey, you’re not lost, you know the way.” 

Here the dream ends and reality begins.  

I’ve been struggling with a decision that feels scary to move forward yet exciting and exhilarating too.  It feels like I’m jumping off a cliff so when I woke from my dream I realized I heard my answer.  It goes like this.

“Diane, trust yourself.  Trust you will discover the way.  The answers live within you.  When you let go of expectations and make room for crazy, wild ideas you invite your inner guide to chime in.  Listen to your dreams.  They are full of wisdom and guidance.  The signposts shine everywhere for you to find them.”

Ah, I love those messages.

Raising a child with autism can create a semi-truck load of fear but I found fear doesn’t work for me or my child or the rest of my family.

I now focus on replacing fear with curiosity and calm trusting I will know the way.  This works so much better.  It may feel scary to look at the entire picture, but when I take it step by step, I don’t get stuck frozen in the fear quite so much.  I’m learning that I can do it, whatever “it” may be.

My husband also adds that the message from my dream could be as simple as, “Don’t drive while sleeping.”   I prefer to think that I choose not to sleep while I'm driving my life.  Connecting with curiosity keeps me awake in the calmest way.

Diane Hunter, mind-body coach and parent of a non-verbal child with autism, helps overwhelmed parents find a sense of peace and a deeper connection with themselves and their child. She’s passionate about teaching the power of non-verbal communication and writes on her blog On most days you’ll find her hanging with her two greatest teachers, her two children, and her husband in their home in Los Gatos, C


Friday, October 29, 2010

Quick Fix

Ok, I confess, I'm too tired from our week's "vacation" in the hospital and the subsequent dysregulation and lack of sleep that the change back to home has wrought for my boy.  He's on the mend now and, truly, I thought I would have the mental wherewithal to write something meaningful and inspiring between our return home on Tuesday night and my deadline for today.


The stress of the hospital, the round the clock breathing treatments, the meds, the unceasing parade of people —doctors, nurses, therapists, nursing students, medical students, social workers, child life specialists—has all taken its toll on my boy's already finely balanced state. (Seriously, the only person we didn't see was the hospital chaplain!)  He can't sleep unless I'm with him, he can't play unless I'm with him.  I can't go to the bathroom...well, you get the idea.

I have lots of wonderful things to share from our experience; really, I do.  It will just have to keep though.  In the meantime, here's the beginning of the story (as told on my blog):


Things have been kind of quiet on my blog lately, I know.  Let me assure you, that's far from the case in our offline life! There are probably a dozen or more half-composed posts in my head and a smattering more in my drafts; life has been moving too fast for me to collect my thoughts, my words and my energy at the same time to bring everyone up to speed.

Suffice to say, school is not great but it's not entirely awful, either; it's just not a good fit.  Everyone recognizes it and we're working to remedy the situation as soon as possible.  Meanwhile, there are sensory and behavioral ramifications to the poor fit— all of which have kept Niksfamily hopping.

We're still fighting too many sleepless nights and dysregulated days, wondering about possible metabolic causes and going through multiple rounds of blood-letting blood tests.  Toss into the mix a bout of bronchitis and an ear infection which have just cropped up and, well, yeah. Exactly.

Somehow, though, if I look closely enough, I can see the glimmers of progress amidst the chaos of dysregulation and I am left stunned, speechless and in complete awe of my child.


Yesterday, the worst of the illness was taking hold and my little one was a mess.  His fever spiked to 103F as he sat on the sofa, restless and uncomfortable.

Nik:   Fix, Mama. Fix.
Me:   Fix what, baby?  Your toy? (Nik always brings his broken toys or the ones which need new batteries to me and I tell him"Mama will fix it, sweetie.")
Nik:   (Vigorous head shaking to indicate no.)
Me:   Your music? Do you want Mama to sing for you, lovey?
Nik:   (More vigorous head shaking accompanied by pathetic whining and tears now) Fix, Mama.
Me:  Oh, baby, I wish I knew what you need me to fix. I want to fix it, I do.
Nik:  Fix.  Fix.  Fix (reaching near-hysteria and beginning some mild self-harm)

I gathered my boy onto my lap, cradling his hot little head in the crook of my neck so he wouldn't see  my tears of frustration.  His speech device tumbled onto the sofa next to him.  He squirmed in my arms; I thought he was just trying to get comfortable.  He leaned over and dragged his talker onto his slender legs.

Fix. Ear. Fix, Mama. Doctor.

Words I had begun to think I might never hear.  I'm not sure, but I think my heart filled to overflowing before it shattered.

The Work

The other day, my eight year old son was working on the computer. His ten year old sister was looking over his shoulder, bossing him, driving him nuts. They started to squabble. My husband wound up yelling at her, like most parents would with a typical kid. Nothing major, just "break it up, stop your fighting." That kind of thing. But our daughter has Asperger's, and she takes things hard, and interpreted it as an insult. She decided both her father and brother hated her and thought she was "stupid." She was in full escalation.
She came screaming upstairs and before she could slam her door I caught her and asked if she wanted to talk. Listening to her side for a few moments, I asked if she wanted to see if we could turn it around and help her feel better.
Amazingly she said yes, and agreed to lie down with me on the king size. She nestled in under my arm. I recently read Byron Katie's A Thousand Names for Joy: Living in Harmony With the Way Things Are, and had already discussed the concepts with both kids, so I asked her if she'd like to apply Byron Katie's "work" to the situation. She agreed, and what happened was very cool.   
Byron Katie's work consists of four questions.
The first question being ...Is it true?
I asked, "Is it true... Dad and Seth hate you and think you are stupid?
"Yes," she answered firmly. Her conviction made me chuckle inside, but I kept my poker face. 
I proceeded, "Question number two...Can you be absolutely certain it is true?"
"Yes," she said.
"Riley...could there be the teeniest tiniest possibility they don't hate you, and don't think you are stupid? Just the teeniest? Might Seth have merely been annoyed, without actually hating you? Might Dad have been having a hard day, and just not in the mood to hear you fight?"    
"Well," she considered.
"That's all you need to do Riley. It is enough to have the tiniest bit of willingness to see it differently. You are really growing up, to be able to do that."
She loves feeling grown up.
"Question number three. How do you feel when you think Dad and Seth hate you and think you are stupid?"

"I feel bad," she admitted.
Following up, I asked, "Do you want to feel bad?"
"Great. That's why we're doing this. Good for you! Question number four, Who would you be without that story?"
"I'd be someone who isn't hated and who people don't think is stupid."  
Then I explained the concept of projection. How what we see in others is something which is present in ourselves. If we didn't have at least a little of it, we wouldn't recognize it in someone else. That goes for good things and for bad.
"ARE YOU SAYING I'M MEAN AND HATEFUL?" She cried, folding her arms over her chest.
"I'm saying you are human. We all have good inside us, and we all have stuff we need to work on. Everybody does. It's no big deal."
She unfolded her arms.
"The next part of Byron Katie's process is turning it around. You take the statement apart and look at it from all sides. Instead of... Dad and Seth hate me and think I'm stupid, try...
Dad and Seth love me and think I'm smart."
She took a moment to consider this.
"Or, instead of Dad and Seth hate me and think I'm stupid, try...
I hate Dad and Seth and think they are stupid." 
She laughed.
This child who was EXPLODING not five minutes prior was now laughing at the absurdity of what was going on in her mind. 
We played with it a little more, looking at it from every angle, and when we were done, she was happy.
"Now Riley, aren't you glad this whole thing happened? It gave us an opportunity to explore our thoughts. Look how much we learned, and both of us can apply it the next time either one of us is upset! I really appreciate working through this with you!"
She went downstairs and thanked Todd for yelling at her, because she wouldn't have learned so much if he hadn't. The situation was totally diffused, except for Todd who was still irritated, and wasn't sure if she was being sarcastic by thanking him.
Then he remembered.
She doesn't do sarcasm.

One small victory. We don't always get it right, and when we don't I tend to beat myself up. This one is worth celebrating.
One more tool in our toolbox.
One incredible, very grown up, little girl. 

Thursday, October 28, 2010

On the Sidelines

My wife wrote this a few weeks ago, and I thought I would share it with you all.


On the Sidelines

I stand on the sidelines of the soccer field-

fold-up chairs, water bottles, empty wrappers of snacks

and the energy of the game.


I have dreamed of these moments-

to stand in the league of typical parenthood

where boys just play soccer,

because that is what you do in the Fall.

Saturdays are spent at the field

watching and gossiping

while our boys run back and forth-

an amoeba of bodies chasing a ball.


There are so many untold stories

masked on the sidelines-

the dad who forgot the red jersey

because he doesn’t communicate with his ex-wife.

She sits across the field in the shade-

the unspoken energy ripples around us.


The mother, who after mindless chatter,

neglects to mention

she just recovered from lung cancer.


And then there is me,

the mom who holds her breath

every time her son touches the ball.

The mom who still is told to check the box of autism on medical forms

to ensure attention for her son.

She secretly praises his progress

but stays wary just in case.


Who is this boy

who joyfully bounds through the green grass

looking like all the other “normal” boys?

Something has shifted.


And who is this mom

who tucks away her story?

The years of therapy, medication and doctors-

stuffing it in her pocket

as she sits back, silent, in her folded chair

pretending this is where she should be.


By Jennie Chapman Linthorst

The Mayor of the 9th Floor

He sat bravely on his hospital bed, his tiny head covered in neat rows of shiny, metal electrodes, giant tears streaming from his eyes.

"Mummy, I don't want to put the buttons on," Nicholas screamed, kicking his feet and flailing his arms. I held him tightly and watched once again, as the hospital staff prepared my six-year-old son for an EEG.

"I know Nicholas," I said, feeling a large, dry lump of helplessness and fear climb slowly up my throat. I tried to swallow the rising lump, but my throat was too tight. I watched as my son's head became lost beneath hundreds of thin, colored wires. I put my head down and swallowed again trying so hard to get down that painful stone of emotion.

The glue holding the electrodes on Nick's head was acrid and smelled like alcohol. It stung my tired eyes. I will not cry, I will not cry, I repeated to myself.  I need to be brave for my son.

I thought about the many procedures and operations my small son had endured in his first few years of life. Why is it he who always must suffer, I thought? Why was he born with Prader Willi Syndrome? Why does he have a seizure disorder? Why does this innocent child have to endure so much pain? Why is our life so very hard? I asked many questions inside my head, knowing no one would answer them.

"We're all done," the nurse said, and I loudly blew out the breath I'd been holding for hours. I thanked God that this torturous procedure was finally complete.

"We're all done?" Nicholas asked incredulously.

"Yes!" said the technician, and she too finally breathed, more thankful than I that her difficult job was over.

"Oh, thank you!" Nicholas said enthusiastically, turning his wire-covered head to look at her.

"You're welcome," she said, stunned that this once screaming child was now quickly composed and thanking her kindly for putting him through such a terrible ordeal.  She finished her work by taping a gauze-like sock gently over his head.  It looked like a medical stocking hat that covered the mass of colored leads and wires. I closed my eyes tightly and prayed once again that this ghastly image of my son's tightly wrapped head would not make me cry.

The nurse attached his stocking hat of wires to a small battery pack that was tucked neatly inside a small, black backpack.  Nicholas looked at the pack and smiled brightly. He clapped his hands with glee and exclaimed,

"Look Mummy, a rescue pack, just like Diego!"

He quickly put his arms through the straps of the small backpack and smiled warmly at the speechless woman, melting her heart with his joyful exclamations and enthusiastic participation. With this quick change of mood, this emotional transformation, my unique son explained with no words, that he understood the meaning of the word, resilience.

I did not.

I wiped the tears from my face.

Throughout our hospital stay, I watched my son in awe, as he warmly touched the lives of so many fellow human beings. The entire Neurology wing seemed pleased to meet this happy, little soldier wearing his headdress. They nicknamed him "The Mayor" as he comfortably chit chatted with all the folks of the 9th floor.  Nicholas warmly greeted patients, janitors, doctors, technicians, nurses and cafeteria staff. All were welcome to his new home. All were treated with the same compassion and appreciation.

"Thank you so much," he said to the cafeteria staff as they delivered his meals every day.

"How are you today?" he asked the nurse taking his blood pressure. "Do you like my Diego backpack?"

Even the stern woman who monitored Nicholas's sleep, came into his room smiling one day. She guided me into the lab where video monitors record the movements all patients make while they sleep. There, on one of the television screens, was the smiling face of my precious son. His head was resting gently on the very colorful picture of SpongeBob SquarePants that adorned his beloved pillow. It was difficult to discern who was happier, the silly, yellow sponge or the beautiful child wearing a turban made of gauze.

I am amazed at this young boy's desire to reach out to others despite the overwhelming difficulties in his life.

I realize once again that it is my life that is difficult, not his.

I am like all parents of children with special needs. My life is a mixture of incredible pain and thoughtful introspection. I must watch my beautiful son suffer more than most. But also, I am blessed, as I watch him spread good will and love so freely to so many others in this world.

As we packed our bags to leave Children's Hospital, many of the staff came in to our room to shake Nicholas's hand good-bye.

"Good-bye," he said to them all, "Drive carefully!"


Come visit our blog at

Also, on November 3 at 10 pm (eastern time) on Discovery Health, there will be a episode called, "My Deadly Appetite". It features a 14-year-old boy named William Weaver who is admitted into the Children's Institute in Pennsylvania for symptoms related to Prader Willi Syndrome. 

Wednesday, October 27, 2010

The Beginning of a Long Conversation

Oscar sits perched on a concrete wall in the shady courtyard of the windowed hospital building. He checks his watch and then leans over into the landscaped border, his lanky limbs splaying at odd angles, and scratches designs onto a gray rock with a stray piece of red bark.  I’m hunched over my phone trying to access some conference notes on scoliosis research in people with Prader-Willi syndrome.  Our appointment with Oscar’s spine specialist is in eleven minutes but my “smart” phone is having trouble accessing the internet.

I’ve charged Oscar with keeping track of time for me. His watch is his security blanket, helping him bring order to the chaotic world of shifting schedules and revised plans. He’s obsessed with time so I call on him to use the watch in appropriate ways whenever I can. Now, when we need to make sure we get to the appointment on time is a good use of his excessive checking. (Later, when he’s supposed to be napping, not so much.)

“Mom, eh, eh, we have ten minutes eh eh”, he says, flicking his wrist up to within inches of his nose to consult his watch for the fifth time in the three minutes we’ve been out here.  

“Ok, Oscar, thanks.” I reply distractedly. The signal is in and out and I’m starting to wave my phone above my head in desperation. I know it won’t help, but it makes me feel better.

“What are you doing, eh, eh?”  I can tell he’s worried we’ll be late. His extra “ehs” are some verbal tic that increases with anxiety.  The tic and the stuttering cycles that wreak havoc on his ability to get his words out are the two main reasons we’re considering returning to private speech therapy.

“Oh, sweetie, I’m just looking for this research I saw about scoliosis and Prader-Willi syndrome to show Dr. Gray.”

“Oh”, he replies, his brow furrowing with confusion. 

I have Prader-Willi syndrome, right eh eh?” he says half to me, half to himself.

His brain does not allow that he might have both.  And yet he knows we are here in this hospital every four to six months to check on the twenty-some odd degree S-curve we detected when he was two.  He remembers squeezing into a hard plastic back brace for an entire year, until he outgrew it last April and the orthopedist we were seeing for his unrelated bone disorder said he didn’t need it anyway.  (That doctor didn’t believe in bracing until thirty degrees or worse.  Another one, at a third hospital, thought surgery was the way to go.)

Oscar stops work on his design and looks up past the shimmering windows toward the narrow slice of blue sky to ponder the possibility of having both -- scoliosis and Prader-Willi. I can feel his anxiety level creeping higher, but I feign distraction with my phone. Sometimes talking only fuels his anxiety so I’m hoping he’ll drop this topic until after the appointment when we’re buckled into the car for the hour-long ride home.  We can talk then.  If he gets too anxious now I won’t be able to sneak in that twelve-tube blood draw that we need for his endocrinology appointment next week.

My feigned distraction is no deterrence however. He perseveres.

“So, mom, is Prader-Willi syndrome a disabled eh eh?” he asks, sitting up straight now. His voice stumbles awkwardly over the word “disabled”. He’s not sure it’s the right word and I can see in his eyes that he’s afraid of the answer.

“Yeah, Prader-Willi syndrome is a disability”, I respond, looking up to smile reassuringly into his deep brown eyes. I know something about fearing disability.  Fear of disability haunted me before I had children. And then, when Oscar was born, I feared him – the floppy baby who couldn’t move his head or latch onto my breast.  I don’t fear Oscar now and I’m sad that he might be starting to grieve his diagnosis.

I’m not prepared for Oscar’s next question.  “But what do I have that’s disabled?”

I’m not sure how to answer. My mind races with all the ways in which Oscar already knows he needs extra help.  He has a 1:1 aide in school to assist with transitions and sensory breaks and staying on task. His schoolwork is modified for length and difficulty.  His food intake is strictly monitored. He works with a learning specialist, two OTs and a speech therapist every week.  He still naps for two hours every afternoon. And just a few minutes ago, as we walked into this sun-dappled courtyard, he was talking excitedly about how much he loves math and how his teacher is so good at giving him the right level math for him.  “It’s not the same level as the other kids but it’s the right level for me, mom, and it’s so fun eh eh.”  

I realize now that while I use the word disability to describe our circumstances to other people, I’ve apparently never told Oscar that Prader-Willi syndrome is a disability.  I’ve never referred to Oscar as disabled, not to him or to others.  We’ve always just focused on what he can do.  Disability implies “cannot” to Oscar. No wonder he’s confused – we’ve only ever talked about “can”. 

I’ve given up on finding that scoliosis research and am struggling to form an answer to Oscar’s question. What does he have that’s disabled?  What do I tell him now, at age nine?  He’s probing for the first time and I don’t want to gloss over his question.

So I decide to start with, “Remember how I told you that when you were a baby your muscles were really weak?”

“Oh yeah, I remember that,” he replies, smiling with relief, assuming there’s nothing more to add. 

He scoots his bottom off the wall and claps the red dust from his hands. He checks his watch. It’s time to go.


Mary lives in Northern California with her husband and three kids. She blogs at Finding Joy in Simple Things.

Getting Clear

I don't know about you but I did not expect to have to become an expert mediator when I became a parent.  I suppose I anticipated honing my parenting skills as my children grew, making mistakes and learning from them. If pushed I would have agreed that there would likely be times I would be put in the uncomfortable role of needing to confront an adult in my child's life over something but I would have guessed it would have been something along the lines of not being played enough on the soccer field, or being wrongly accused of something at school. I didn't anticipate the sometimes daily onslaught of phone calls and meetings, intense negotiations that even the most skilled and trained mediator would find challenging.

Funny thing (well more ironic than funny "ha ha") is that I am a very socially anxious person. I have a hard time talking on the phone and could go days without even talking to someone if allowed. The idea of going to a room with as little as 3 people in it for whatever reason is enough to make me shake with nervousness and my mouth go dry. I hate confrontation of any sort and I even have a hard time figuring out how I FEEL about things. Most people who know me are completely flabbergasted when they find this out about me. My own husband of over 15 years used to think I was being flippant when he would ask me "Well how do YOU feel about it?" and I would answer "I don't know". I really didn't. As soon as my emotions were activated in any way that was remotely threatening or overwhelming to me I would "shut down" and I couldn't think straight at all. I would just feels waves of raw and very intense emotions, weird things would happen with my vision and more often than not I would no longer really be "hearing" anything that was being said. For those old enough to get the reference, think of the teacher on the Peanuts cartoon "wah wah wah".  I didn't know if I was mad or sad or frustrated or feeling threatened. All I knew was there was a panic bell going off in my head.

But, and this is the important part, even though inside I was in complete distress - my outward appearance did not usually give away what was going on internally. I would SEEM calm, it would SEEM that I was still very much paying attention. Occasionally I would be able to calm my alarm system down enough to pipe in with a comment. I didn't realize it then but usually that comment would pack a real punch - more so from the raw emotion being injected into it unknowingly. The emotion would register with those in the room as threatening to them in some way, even if the words I actually spoke were fairly innocuous. I would typically leave the room feeling confused and unsure - I would have picked up on some "weird vibes" in the room but would be unsure why people in the room seemed to feel so defensive around me when most times I hadn't anticipated the meeting becoming adversarial.

I began to really take a look at my reactions and realized that typically I would "overload" during meetings or exchanges with people who I saw as having a great deal of authority and/or power over my son. It was almost a sense of panic and utter terror that would be set off in me if I sensed, for even a moment,  that they did not understand my son or that they had formed an opinion that I did not agree with.  It has taken a great deal of self reflection and therapy to start deciphering my emotions and to be able to be able to reign them in during highly charged times. I have made this a priority because I realized that no matter how much I cultivated positive one on one relationships with all of the professionals working with our son and family (and there are dozens) that I could undo most of that hard work with a single sentence in a meeting. If I couldn't get clear about what we wanted for our son, and more and more now - what he wants for himself, and communicate that calmly and rationally even to a room full of sceptics, then we could never move forward. I would not be able to hold others accountable if our goals for our son were not being formulated or worked on because I never really told them clearly what they were.

I'm a work in progress. I'm okay with that. With each passing day and every meeting under my belt I am feeling more and more confident in how I participate in discussions about my son. I am also feeling more confident about myself and my ability to move past my panicked internal emotions and find clarity. I notice that professionals seem less "on edge" when speaking with me and overall I am a calmer person. And that is always a good thing.


Tuesday, October 26, 2010

Finding hope in despair

Before I learned that it was ok to embrace despair, ‘hope’ was my default, go-to word, which I used often to express my false optimism to friends, family and even with some professionals.  Eventually, I did improve my relationship with hope, but only after being honest with myself and seeing it for what it can be: a double-edge sword.

As I tried to make sense of special needs parenting, the meaning of ‘hopeful parent’ wasn’t easy. I can tell you that I do not qualify as “hopeful” 100 percent of the time. In fact, I’d say there have been many days where I’m less than 50 percent…but, I’ve become ok with it because it’s a journey that I think is worth sharing with you.

I had to become comfortable with all of my feelings of despair in order to allow hope into my life. I learned to let despair arrive when it wanted to, and I gave it the full attention it deserved. But only after spending time with this dark partner, did I invite the idea of hope to come over to visit.

Didn’t happen over night

I was afraid of becoming an overzealously hopeful parent who lets hope overshadow the quality of their child‘s life. I just knew that disappointment lurked around the corner and it would rush in if I became too hopeful.

Sure, I used to feel utterly guilty for not being as hopeful as all of our friends, therapists, teachers and, even some of the specialists (if you can believe it).
Occasionally, I’d realized that some of the professionals just had plain-old-occupational enthusiasm.  I  found it hard to get excited about all of the work that was ahead for me and my family.

False guilt

It’s amazing how guilt - false guilt - can cause you to project your feelings on to others. When you live inside all of the work it takes of raising our children, it’s quite easy for people to be overly hopeful about what your child can or will do some day. It feels as though they expect that same high level of enthusiasm from you, 100 percent of the time, which is impossible. And it took time for me to realize that.

Learning to understand my own feelings is a major task. They can easily become self-fulfilling prophecies that affect my perception of those trying to help my daughters achieve her full potential, an entirely different challenge. However, when I became comfortable with my feelings of despair,  I was able to let hopefulness eventually arrive.

Gaining hope’s trust

At first, hope would just visit every so often, like a an estranged friend, with the exception that you don’t really pick up where you left off because it’s a new relationship and there are trust issues with all of your feelings and expectations. I learned that I could trust my feelings of hope as long as I remained levelheaded about them.

That helped me feel joy when our children reached even the tiniest of milestones and goals. At the same time, I was not overly devastated about many of their shortcomings because I never let hope shade their quality of life - or mine, yet I always kept it within reach so it would be there when I really needed it.

As I my relationship with hope grew, I started having clarity about all of the hopeless moments, which in essence allowed me to be a parent and person, undefined by my medically fragile children. It is a process that I’m still working on, but I wouldn’t be this far if I wouldn’t have accepted those earlier dates with despair.

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:

Monday, October 25, 2010


The room is dark when we walk in as the only light is from a TV on the wall. A primary color is on the wall, it might be blue. Or green. It’s a familiar room, and it’s cold, just like we remember from a few months earlier.

We’re led to the room by a face I recognize and he’s friendly and warm. I’m holding my son, Gage, who is holding a stuffed animal. A bright orange cat we’ve named Sally (to work on Ls in speech therapy) publicly, but call Ugly Orange Cat privately, is tucked under his arm.

We’ve been referred by our doctor because our daughter has been diagnosed three months earlier with a kidney disease that would eventually lead to kidney failure. This appointment will confirm that he indeed, has the same disease. I’m still nursing our daughter, who is at home with my mother and have orchestrated the timing perfectly. I have a total of 2 ½ hours to return home to feed her.

We tell the tech that our doctor won’t get back to us until that afternoon, maybe the next day and the waiting feels excruciating. Without our knowledge, he leaves the room to speak with the radiologist so she can come and confirm the news on the spot; we now have two children with a life-threatening kidney disease. She embraces me in tears when she realizes she met us a month earlier at a mutual friend’s party. Our son looks at us with a puzzled look when we cry and says, “Ohts wong?”


It’s a little past 2 years later and we’re sitting in our nephrologist’s office without our kids. The purpose of the meeting? To talk about next steps in the process of a kidney transplant for him, starting a growth hormone soon, and being potential kidney donors. We've already begun the drug EPO, the same drug they give to chemo patients to help them feel better. We learn that we have to hold him down, against his will and ours, and administer the drug through painful, stinging shots.

Meanwhile we care for the needs of our daughter, who is also feeling the effects of failing kidneys but so much more healthy in comparison. Her kidney function is 40% and we are thrilled.


It’s 6 months later and we are sitting in the transplant clinic with our son. The doctor explains the process and he says we can’t wait for dialysis. Julian takes our son out of the room because I am in shock and crying. The plan, always the plan, was to perform a preemptive transplant. He suspects that our son will begin dialysis in a month or two. He’s wrong; he begins it in 22 days. We start to realize in those 22 days that he is just walking dead, living but not living. We take an impromptu visit to the dialysis department that day, where we meet a charming nurse who will become a friend as we celebrate in the future and help me advocate for both kids.  


It is 6 months later and we get the news that a friend is able to donate a kidney in 12 days. We are fearful for her and our boy, who has just suffered as we would come to learn, a tragic medical trauma (he was awake during part of a surgery). The kidney transplant is a success and we are beyond happy, even as I realized I’d walked through his funeral in my head.


Almost two years from this date and I am walking away from a mental hospital, where my son now resides. I've just committed him, for I don't know how long, because he is a danger to himself and to others. I’m stunned about how I feel that his kidney transplant (and his sister’s) feels like it was a walk in the park compared to this; I've just signed papers for him to be placed in a "safe room" otherwise known as a padded room.

A week from the day I walked away from the mental hospital, where my son resided, when I pick him up with a very small glimmer of hope that he won’t kill himself, either on purpose or by accident, while he is raging. He’s calm. He’s talking. He’s no where near to being himself, but really, because of the last couple of years we don’t really know who he is anymore. We start over being parents to him.


It’s 6 months away from the time and space when I walked away from the mental hospital, where my son resided. I’m struck by how there isn’t a plan for his treatment but rather an involuntary need to be reactionary. We are rarely sure which way to turn and we are nearly always waiting for something bad to happen. Kidney failure brings definition; dialysis and transplant. Mental health treatment brings trial and error that requires stamina, persistence and the willingness to react quickly to unknown factors.


It is now minutes after my son is born. I hold him, feed him and watch him try to open his eyes. I look at my husband and we share a moment of bliss while we admire what we created; a (seemingly) healthy baby.

I remember those details with great clarity; I just don’t remember how that felt.


Julia Roberts is co-founder of Support for Special Needs (a social networking site) and writes at Kidneys and Eyes.

Sunday, October 24, 2010

A shock to the system

I'm out having a rare lunch with two old friends. Other than my family, they know me better than any people. They have been my emotional pillars during the early years with Max, when I was out of my head with grief and anxiety. They care deeply for both of us. 

One friend is telling me that her son's class has two kids with special needs, both of whom have aides. "One of them is deaf, but otherwise he is typical," she says. "And the other kid has cerebral palsy, but not as bad as Max has it. He can talk, and his hands are fine."

I'm startled. She is just being matter-of-fact, but the words "not as bad as Max has it" are jolting.  

I say nothing. Suddenly, though, I am having one of those conversations in my head. Why am I so sensitive? Maybe it's a good thing that she feels she can be so matter-of-fact around me, unlike some other friends who still seem uncomfortable when the subject of Max and his disabilities comes up. I wonder how she's seeing Max these days. I think he's making great progress, but I am not sure it seems that way to her given that, as she's just noted, Max can't exactly talk and his hands are still screwed up, to use the technical term. What is this kid with not-such-bad cp like, anyway? What would it be like to have a child with cp who is "not as bad as Max"? I think he's doing just fine for himself, but clearly, she doesn't. Unsettling. 

Soon enough, I'm sucked back into the conversation with friends. But I am unhinged. And still, I keep wondering:

When will words stop jarring me? 


I blog daily over at Love That Max.

Let's hope

"I have to post on Hopeful Parents tomorrow," I said to my husband over dinner tonight. "Do you have any ideas for topics?

"Nope," he said, shaking his head. "Now if you had said you need ideas for 'Hopeless Parents,' I've got LOTS." 

We smiled.

And that clinched it. I had planned to write about my angst over my son's school placement and the fact that he's in a segregated high school that's focused on life skills. But frankly, I'm tired of feeling hopeless and helpless so I'm going to write about recent events that give me glimmers of hope.

The other night I made Ben a hamburger. "It's as good as McDonald's" he signed. It took me a minute to decode his message and then my heart skipped. For a teenager whose thoughts are generally trapped in a body that can't express them, this was a small miracle. It was also so sweet. Like when we sit down to a special meal and he raises his glass in a cheers to the cook.

Last week he tried to tell me what he wanted to be for Halloween, but things got lost in translation. I knew he was signing a 'Z' and then "animal." I became like a game-show contestant, screaming out every Z-related animal word I could think of. "Zoo?" "Zebra?" Bingo! 

I've got to get to the costume store to buy white felt that I can sew onto a black costume for the stripes. It will be a repeat of last year, when he wanted to be a male ladybug, and I had to sew on a million black-felt circles. He's 16, but Halloween is still his favourite holiday.

We recently started a typing program at Holland Bloorview. Occupational therapists there found that traditional touch-typing -- where you memorize the place of each key and which finger should strike it -- doesn't work for kids with fine-motor problems. That's because they have trouble isolating each finger. For children like Ben, a "hunt and peck" approach with one or two fingers -- where he can scan the board for the key he wants and hit it -- is more effective.

Typing is a challenge for Ben and his anxiety often bubbles to the surface, causing him to shut down. But he's slowly realizing that he CAN do some of the games we use as homework, and tonight I was surprised to see a smile light his face when he had success. His favourites are secret messages where you solve a message using a number legend. 

Ben is a whiz at computer games and he's able to accomplish missions that are beyond me. Computers are a freedom for Ben, allowing him to show his intelligence in ways he can't communicate conventionally. When he gets stuck, I'm rarely able to help. "Let's wait till Dad gets home tonight," I'll say, thinking, really, I SHOULD be able to do this.

Ben has always been attracted to the unusual. He has a large army of Star Wars action figures, but only the most bizarre creatures may apply. Like Ponda Baba, or Ishi Tib, or Bom Vimdin. He reminded me tonight by going into his iPod and pulling up a picture of Ellors Madak that he had left him, by accident, at our local book store. He tends to send his creatures out on adventures. We are probably the only Canadian family that purchases Star Wars figures from the U.S., because that's the only place we can source the rare creatures Ben wants. As I type this, he's hobbled out of his room a few times to ask if I've ordered 'Snaggletooth' online. 

We go on Monday to get Ben's new orthotics. They're putting a lift in them to accommodate the inch he lost in his left leg as a result of his hip surgery earlier this year. Because of this leg-length discrepancy, and because he still can't straighten the operated-on knee, he has a significant limp. "Thump thump, thump thump" can be heard as he lumbers down the hall. But somehow he keeps on trucking.

He's such a loving soul.

Louise Kinross is communications manager at Holland Bloorview Kids Rehabilitation Hospital, where she produces BLOOM, a magazine and blog on parenting kids with disabilities.

Saturday, October 23, 2010

Have You? Would You?

As we approach November which is National Adoption Month, have you ever wondered how an adoption experience would affect your family? Have you considered adoption but been afraid because of some of the stories that you hear or because of the high-profile stories that have been in the press? I believe most families considering adoption would answer yes to both those questions. However, a landmark study of 600 families by the University of Minnesota’s Center for Twin and Family Research,  is shedding some light on the adoption experience.

Some of the more interesting and significant preliminary results show:

1. There is virtually no difference in psychological functioning between children raised in adoptive families and those raised in biological families. In measures of delinquency, antisocial attitudes, aggression, substance abuse, and other problem behaviors, the differences between adopted children and children being raised by their biological families were insignificant. Measures of well-being, identity, academic achievement, and other positive characteristics were also virtually identical.

2. Sibling relationships appear unaffected by adoption. Relationships were equally close and loving among all kinds of sibling pairs (adopted-adopted, adopted-bio, and bio-bio).

3. In parent-child relationships, researchers identified some differences between adoptive and biological families. Parents and children felt as attached to each other in adoptive families as in biological families, but adopted children reported more conflict with parents than did biological offspring. This did not, however, result in greater behavior problems outside the home, as might have been expected.

4. Despite the absence of genetic links, adoptive siblings are psychologically similar to one another in some significant ways. As would be expected, siblings by adoption showed no similarities in the kinds of personality traits that psychologists know to be largely genetic in origin, such as being shy or outgoing. In two areas of behavior, however, researchers identified surprising similarities among adoptive siblings. First, in academic achievement, adoptive siblings turned out to have comparable IQs (although not as similar as those of biological siblings), as well as similar academic motivation and achievement levels. This is likely attributable to parental influence. Adoptive siblings were also alike in regard to problem behaviors, such as smoking, alcohol use, and disobedience. Having an older sibling with problem behavior was highly predictive of such behavior in younger siblings. Thus, the research suggests that problem behavior is less a matter of parental influence than of sibling influence.

My experience as a mom to both a birth child and children who have been adopted has had its ups and downs. I don’t believe many of those ups and downs are a direct result of the adoption experience however, but rather to the lives my children lived before joining my family. But even through the difficult times, we have been and always will be a family, first and foremost.

Thursday, October 21, 2010


Several months ago, my family moved my grandma from her apartment in a retirement community to a shelter care facility where she has 24 hour help. The move was hard on her; she's an extremely private person and although she has her own room, there are 10 other residents in the house.

She's also not a person who trusts easily and as she has aged, her feelings about people outside of her own family have begun to border on paranoia. Fearful of losing her most precious possessions, she asked me to take care of her huge collection of family memorabilia - photos, newspaper clippings, funeral programs and guest books, letters, genealogies, and miscellaneous other items collected across her 88 years of life.

When I brought the boxes home, I gave them a cursory look, but didn't have time to devote to a thorough investigation. Now that my kids are back in school, I've immersed myself in my family's history. To say that I'm enjoying myself would be a serious understatement.

That side of my family were all farmers in the midwest. Their birthplaces are Illinois, Iowa, South Dakota, and Kansas. They were, universally, poor. They lived near small towns and were fiercely faithful people who walked to town every Sunday for services. None of the communities my family lived in were less than a full day's travel from the nearest large city before the 1940s.

Those isolated women, my female ancestors, would understand so much of how I feel, I think. When the Spanish flu decimated my family in 1918, there was little they could do for their beloved children beyond trying to keep their fevers under control with wet towels. When their children were struck down by polio, mumps, "wasting disease," or any other illness, they lived or died by the vagaries of nature, not medicine.

They just dealt with it. There were country doctors, of course, but before antibiotics, immunizations, and the thousands of other medical innovations of the early 20th century, there was little they could do for most illnesses.

I live in that world. There isn't much medicine can do for pediatric mental illness, but worse, there isn't much that medicine wants to do for pediatric mental illness. Carter is eight years old and his primary diagnosis is bipolar with psychotic features. Right now, he's the most stable he's been in over two years, and while I'm grateful down to my toes for that, I'm also furious that it took us this long.

It didn't have to take this long. Certainly, mental illness is not like strep throat; we can't throw a standard series of medications at it and assume that it will be fine. However, in spite of the fact that finding the right treatment takes time in even ideal circumstances, there's no way it needed to take two years.

In the past two years, we have waited. We waited for our first appointment with a pediatric psychiatrist and we waited for a psychologist. After Carter's intern psychologist graduated, we waited for a staff psychologist. We waited for a behavioral management specialist, and we're still waiting for occupational therapy.

Worse than the waiting lists are the services that we desperately need but that don't even exist. In the summer of 2009, Carter was acutely ill and in urgent need of a specialized environment during the day while I worked. He needed a day treatment program, but such a program does not exist here in Albuquerque. Carter was not safe for a regular child care environment and we had no options except for me to leave my job.

And so we sacrifice. We make do. We deal. We manage on our own, with severely limited resources and far, far too few options. We just get by.

When it became obvious to us several years ago that Carter was seriously ill, I could not imagine the vast injustices that exist in the educational and health care systems. I banged up against them constantly, refusing to believe that our (very expensive) insurance company and the US health care system would let such huge gaps in care go unchallenged.

I will continue to advocate for better (much much MUCH better) care for Carter and for all people living with mental illness, but in the meantime, there is some measure of comfort in thinking of the women who came before me, doing the best they could. They were resourceful and tough, creative and caring. They grieved their losses and kept living.

Those are the women I come from, bad asses all. Carter needs the same kind of mother; I hope I am growing into that legacy.

Adrienne blogs at No Points for Style.


After a long day, and most days are long, too long, I dress Sophie for bed and place her on her left side, where she curls into a fetal position and lies, quietly, for a minute or two.

Wherein the deep night sky
The stars lie in its embrace
The courtyard still in its sleep
And peace comes over your face

I'll lie next to Sophie, my body curved around hers, one arm thrown over her a vain attempt to calm the twitching, the leftover seizure, the cumulation.

'Come to me' it sings
'Hear the pulse of the land
The Ocean's rhythms pull
To hold your heart in its hand'

 The twitching doesn't stop even when I slow my own breath, close my eyes, the heat from my mouth in the curve of her shoulder. Breathe, I think, I slow my breath, breathe I think.

And when the wind draws strong
Across the cypress trees
The Nightbirds cease their songs
So gathers memories.

The velvet night lends prayer a release; my lips might form the words of one, a plea a promise a bargain an inchoate longing.

Last night you spoke of a dream
Where forests stretched to the east
And each bird sang its
A Unicorn joined in a feast

The dark is all around us but palm to palm I imagine swimming in light. Heartsong, I think it's called. The song of the heart.

And in a corner stood
A pomegranate tree
With wild flowers there
No mortal eye could see

Tears drip down and into hollows, breathe I think and breathe.

Yet still some mystery befalls
Sure as the cock crows at morn
the world in stillness keeps
The secret of babes to be born

From where come miracles?

I heard an old voice say
"Don't go far from the land
The seasons have their way
No mortal can understand."


The italicized words are from Loreena McKennit's song Courtyard Lullaby. The rest of the dreaming is mine. You can read more of my words over at a moon, worn as if it had been a shell.

Wednesday, October 20, 2010

License to Worry

I know of several teenagers and several adults, both on and not-on the autism spectrum, who don’t drive or don’t want to. It could be because they realize that they’re too easily distracted, or that they know it’s a huge responsibility and don’t feel ready or comfortable, or even that they simply aren’t interested. I’m sure there are many reasons why people who don’t drive do not. Unfortunately, my son, who was diagnosed with autism at age three and didn’t start talking until age five, does not feel that any of those reasons apply to him. He wants to drive. And he turns sixteen next week.

Nigel has always wanted to be like everybody else. I know this because even before he could talk, he would try to interact with other children by going up to them and laughing in their faces or bumping into them in the hopes that they would play with him. Without words, he tried to engage them. When he started learning to talk, he would go up to kids at a playground, repeat lines from his favorite movies, mixing up words he didn’t know, and the other kids would ask, “What language is he speaking?” Years later, when he was being bullied at the bus stop, I told him that I would drive him to school instead. His response: “But I just want to take the bus so I can be like everybody else.” He is nothing if not determined.

I know that there are people on the autism spectrum who can and do drive. But Nigel is just not there yet, and it may be a while. It has nothing to do with his ability to operate a vehicle. If anything, that will be his strength. The problem is his high distractibility. And his five-year emotional delay. Those are the main things standing in the way of him getting his driver’s license. I wouldn’t feel confident with an eleven-year-old driving, even if he is 5’10”.

I’ve written about this subject before and received all sorts of well-meaning comments ranging from letting him practice so that he gets familiar with the feel of the car (definitely not the issue), to letting him race go-karts (he has for years), to the patronizing all-parents-are-nervous-about-their-kids-driving (not the same thing). Of course all parents are nervous about their kids driving. When my younger son, fourteen and not autistic, starts driving, I will be worried. But nowhere near as worried as I am about Nigel driving, that’s for certain. It’s a far different level of nervousness. They’re both my sons, and on that level I worry equally, but one son has major challenges with judgment and awareness. And on that level I’m far more nervous.

When Nigel started talking about wanting to drive around five years ago, I almost had a panic attack. He knew then that he would have to wait, but I knew that he would have to wait longer than he anticipated. Last year when he turned fifteen, I talked with him about that, but he still wanted to know when. He wanted to know just how long he would have to wait. I told him that we’d revisit the idea in a year, and he has repeatedly reminded me in the past month that the time has come. Ugh. How will he handle the disappointment if it’s determined that he can’t drive? He’s not content to just maneuver the car around an empty parking lot or down a dirt road. Driving go-karts, though still fun, is not nearly enough. He wants his learner’s permit, and he wants it badly.

And there’s my answer, if I’m aware enough to realize it. He’ll pass the written test (I’m sure with flying colors, due to his near-photographic memory), and he’ll get his permit. And maybe, for now, that’s all he wants. He wants to have his learner’s permit like “everybody else.” He just wants to have it. And I’m hoping that having it will satisfy him for a while. I know that eventually he’ll want to get out on the street, but we don’t have to hit the road anytime soon. And when he starts asking to do that, I’ll sign him up with a professional driving instructor. I’ll still worry, of course. But at least I don’t have to yet.

Anyway, I’m hoping.

                               Tanya writes TeenAutism.

Tuesday, October 19, 2010

Connor Finds A Costume

I bought Connor the first part of his Halloween costume yesterday.

Connor is four years old, and this will be the first year he's ever been trick-or-treating.  We've discussed taking him the past couple of years and have always ended up deciding not to do it.  He never expressed any interest in the costumes, his sensory issues and social anxiety meant that he reacted to strangers with a general air of distrust, and also he can't chew the candy, which meant that Jer and I would be the ones eating all of it.

Well okay, that last part always sounded sort of appealing.

But anyway, we ultimately concluded that dressing Connor up and taking him door to door would not be something that he would particularly enjoy.  It would basically be for Jeremy and my benefit instead of for Connor's; we would be taking him trick-or-treating to fulfill our expectations of what typical families do for the holiday with their children at that age.  So instead we stayed home and passed out candy.

It's a fine line to walk-- figuring out which traditions to keep and which to modify to accommodate our son's differences.  He's always had small, family-only birthday parties, for example, because having people-- especially children, who are as a general rule loud and boisterous-- over in the past would only have upset him.  He doesn't care about the presents either; mostly he just likes the tissue paper, which makes him laugh.  We make sure to wrap everything in way more layers than necessary.  Easter egg hunts are conducted strictly indoors because he is terrified of grass, and we don't put any candy in the eggs because not only will he not eat the candy, but he's not going to touch the eggs anyway.  He doesn't really find them either, but we kind of gloss over that.

But this year for the first time Connor has begun to take note of the costumes being sold in the stores.  He looks up at the Halloween decorations in the stores with a questioning air.  And he began actually paying attention when I pointed out costumes to him and talked about trick-or-treating. 

So when we stopped at a little toy store set back on a street corner in downtown Olympia, I made a beeline for the costume rack.  Connor wasn't interested in being a fireman, an astronaut or a knight, but when I set a fuzzy white monster hat on his head a tentative smile crossed his face as he carefully stroked the ears flopped down around his shoulders.  This kid usually hates hats with a burning passion, so getting any kind of a smile out of him means that the hat is a rousing success.  He nodded when I asked him if that was the costume he wanted to wear, so I bought it and we took it home. 

It was not a particularly inexpensive hat as far as these things go, but the fact that my child was actually asking for a costume meant that it could have been diamond plated and I still would have bought it.  Connor voluntarily offering any sort of information about his desires in public is a monumental occasion and all thoughts about my budget go completely out the window.  If I knew it would make him happy, I'd do my very best to buy him the moon.

So it was decided-- Connor will be a Sasquatch for Halloween, which is a perfectly appropriate Pacific Northwest sort of costume.  And for the first time ever, he'll be going trick-or-treating just like all of the other kids his age.  He may still be a little intimidated by strangers, but he knows a good number of our neighbors now and we'll stick to places that he recognizes.  I'm optimistic that this year he'll have a good time!

It makes me hopeful that as he gets older, more of the holiday traditions that gave me so much pleasure as a child will be things that he comes to enjoy too.  And if he doesn't, well, we'll forge our own traditions that will have just as much meaning for him.

Whether or not he enjoys Halloween though, he's still not going to eat any of that Halloween candy, which means I'll be forced to eat it all.  But I don't really mind that part so much.



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


"Sometimes your joy is the source of your smile, but sometimes your smile can be the source of your joy."
Thich Nhat Hanh


The Saturday Morning Integrated Leisure Experience is an amazing facilitated playgroup for children aged 3-5 with and without disabilities run by the YMCA for our local county therapeutic recreation services.  They get to do exercise, listen to stories, sing, and art projects.  As Pudding is in an autism-specific classroom all week, this is the only supported time she spends with typically developing children.  As an added bonus, the volunteers are excellent, therefore the rest of the family gets 3 hours of respite.  Time to do those chores that are so much more difficult to do with Pudding around.  Time to spend on Cubby.  You want more?  Okay- every other week they go swimming, with one-on-one volunteers, and learn the basics of water safety.  Are you sold yet?  I am.  They had me at respite.

When we first took Pudding earlier this year though, she wasn't sold.  She walked in fine, but squeezed my hand harder.  One of the volunteers distracted her with puzzles as I spoke with the leader.  I hadn't even finished when she was back, climbing up on me as though I were a tree.  I explained how I was going to leave, and she would stay and play, and have fun.  She cried, clinging harder.  I left anyway, leaving her in the hands of the two volunteers it took to calm her down.  I felt that stab of jealousy towards the other parents who could just simply goodbye to their smiling children.  She ran at me when it was time to collect her.  It had taken half an hour for her to calm down and settle in, the volunteers informed me- nothing they couldn't handle.  (Yes, they're that good!).

She really didn't want to go again after that, and would whine through the entire car journey, but she was lured by the promise of swimming.  For the next 5 weeks she continued to go, clinging less each time, but still requiring 10 minutes to calm down.  10 minutes of Pudding crying and screaming and upsetting the other children.  I've lived through many of these episodes, 10 minutes can be everlasting.  Then in March the session was over and was not to be continued until October.

Before we knew it, October was here, and Saturday marked the return of S.M.I.L.E.  I didn't tell Pudding about it.  When she found her old Dora suitcase she would carry her swimming things in, she mentioned taking it to S.M.I.L.E., but I didn't say anything.  Pudding has been making advances lately, we're going through a good spell.  I didn't want to break that spell.  With all the ups and downs that the last month has brought, she has weathered them well, and I didn't want to take her back to that girl who would sob as I left her each week.  I know that isn't the bravest approach to take, but it is hard to be brave when you've been holding your breath for a long time.

So on Saturday morning, Spectrummy Daddy asked her if she wanted to go, and she said "yes".  She sang all the way there, then skipped into the building.  She ran into the room when it was time, and started an activity by herself, with a MALE volunteer!  She said goodbye and hugged us, but turned quickly back to drawing.  She wasn't even distracted by another girl who was flinging herself on the floor in a meltdown like the ghost of Pudding Past.  Was that really just 6 months ago?  I arrived early to collect her and peeped through the glass on the door to see her cantering around the room with some other kids, a huge grin on her face.  She looked up and saw me before I could hide, but she just stopped, beamed at me, then carried on.  When the door opened 5 minutes later, she was happy, but not eager to leave.  She collected her artwork, and said goodbye to the room, and left them with her radiant smile.

I don't know if this spell is going to last.  I wish I knew what wizardry was making it happen.  It could be the result of her teacher's efforts, or getting used to being around more kids, or her dietary changes, or the therapies, or just natural development as she gets older.  I don't know why we go through a huge leap forward at some times, and just as big a move backwards at others.  I don't get it, I don't understand it.  It is a mystery.  So movements can be both baffling and bittersweet.  This merry-go-round might just spin us soon in a direction we won't want to take.  Until then, I'll smile and enjoy the ride, holding these moments close for sustenance when needed, hoping that won't be for a while.

Spectrummy Mummy can usually be found at or on Facebook and Twitter.

Monday, October 18, 2010

Working Through It

I’ve never been that nervous about my son going to preschool.  Okay, scratch that.  When he was two, I was terrified.  But that was because of his peanut allergy, not his tics.  For almost a year, we didn’t know his tics were tics.  We just thought he had a really funny way of squeezing things.  The face he made as a baby was hilarious.

Looking back, I feel awful for not recognizing it.  But that’s part of being a parent—especially a first-time parent.  You don’t observe a funny baby behavior and immediately think, “oh my son has a tic disorder.”  But one day I woke up and watched him do it for about two hours and called and made an appointment with our pediatrician.

For everyone, the ball gets rolling somewhere.  For us, it was right when he turned two.  At the time, I had no idea that our journey would be continuous.  I thought our developmental pediatrician appointment would end with a neat, cut and dry diagnosis of some sort.  (Blame it on my insane pregnancy hormones.)

But I’m getting off track.  Now, two years later, after handfuls of doctor’s appointments and lots and lots of waiting, we have a better idea of what’s going on with my son.  He has Sensory Processing Disorder, dozens of tics, and obsessive compulsive behaviors.  This month, he's being evaluated for the autism spectrum.

What does all this mean?  Right now it means that I’m slightly more of a freak about school.  Will the accommodate his routines?  Will he get in trouble for not being able to leave a certain activity until he’s done everything he needs to do first?  Will his social anxieties impair his ability to play with other kids?  Will my head explode from worrying about all this?

This morning at drop off, I pulled the teacher’s Aide aside and said in a hushed, serious tone, “How is he doing?”

She looked at me like I was crazy and smiled a big bright cheerful beautiful smile and told me, “He’s doing great!  He’s adjusting so well.  He’s doing SO great.”

It turns out he has amazing teachers.  When he needs to do something, they let him “work through it.”  They use that phrase a lot.  After just two weeks they’re recognizing that sometimes he won’t come to circle time because he needs to arrange the housekeeping center a certain way or finish doing a puzzle a certain way or finish lining up crayons or blocks a certain way.

And it’s okay.  He works through it, and then he participates.

Now it’s my turn to work through it, to have faith in him, in his teachers.  To have hope. 

Maria writes at and Shop Sensory and spends way too much time on Twitter.


“Mom, I have two girlfriends, J., and I’m never going to break up with J., but now I also have L.C.,” he tells me, supplying both a first and last name for Girlfriend #2.

For the next couple of weeks it’s, “My two girlfriends” this and, “My two girlfriends” that. I ask if the two girlfriends know about each other, and if so, how do they feel about the situation? No direct answers come from my direct questions, but indirectly he lets me know everyone’s cool.

“Mom, LC has a ponytail. She is so cute. She is in 5th grade. She just couldn’t be any cuter.” Slowly the mentions of LC surpass those of J. I notice, but don’t say anything.

The other night at dinner he announces, “Well, I finally broke up with J.”

“Oh, yea? Because of LC?” I ask.

“She has a boyfriend named B.” he states.

“So did she break up with you?” I push.

He’s vague and doesn’t answer, but what I piece together over the next 48 hours is that he must have said something to J. about being his girlfriend, and she said something like, “You’re not my boyfriend. I already have a boyfriend named B.”

I’m pretty sure LC doesn’t know she has a boyfriend named Rojo, either, and maybe this relationship will go on for years much the way the one did with J., before it “ended.”

But not before some sweet soul is there to cushion the blow, I pray.

Saturday, October 16, 2010

my holland


For my Italian friends ... The following is based on the beautiful essay, Welcome to Holland, by Emily Perl Kingsley.


There are the days that I wouldn't trade Holland for the world

The days that I stand in awe of the windmills' quaint majesty

And marvel at the overwhelming beauty of the tulip fields

There are the days that I scoff at Italy

The days that I feel downright sorry for those who have never been to Holland

Never wondered at the beauty created by Rembrandt's brush

What they are missing here, I tell myself

Poor souls!

How much richer they'd be for a visit someday

For a walk in these wooden shoes


And then there are the days that I look more closely at the Dutch landscape

The days that I see past the tulip fields to the mothers wringing their hands, waiting - always waiting

The days that I see the doctors - the specialists and therapists - everywhere it seems, filling the streets, doffing their caps as they move from one house to the next - an endless conveyor belt of service and need

There are the days that I see the siblings, struggling with dual citizenship in two dramatically different nations - neither of which they can fully claim as their own

There are the days that I can no longer smell the fragrance of the flowers for the stench of desperation and fear

The days that I send my girls off on the train, backpacks full with supplies for their daily trip to Italy

Knowing that only one of them speaks a word of Italian

Relying on a host of translators and guides to keep my youngest safe on such desperately foreign soil

There are the days that my heart simply breaks because I can't make the whole world speak Dutch

There are the days that I watch the planes flying in - filled with mothers clutching their children, looking out the window, ready to point to the Spanish Steps and the Colosseum - knowing they'll find out soon enough, that's not where they are

There are the days when I wonder if my girl even notices the windmills, or the tulips - if she knows there are Rembrandts here

Or if she simply wishes that she were in Rome


There are the days that I see my Holland for what it really is

A breathtakingly beautiful place

A place full of love and compassion

Freedom and camaraderie

And a place where children hurt and mothers' hearts ache with the impotence of not being able to make it better


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.


Run Baby Run

Two weekends ago, I ran in my first 5K race for the Doug Flutie Foundation for Autism.

Wait, did I say ran?  I meant I ran, walked, moaned, cried, and finally mustered every bit of energy possible to run through the finish line.

I had a really great plan for running in this race.  I decided back in May that I was going to run in a 5K for the first time ever, and announced it in grand fashion to all my friends and family on my facebook page and in my blog.  I bought new running shoes, joined the “couch-to-5K” program, and loaded new songs onto my iPod.  This was going to be my new thing.

Best laid plans ...

I lost my way several times in the months leading up to the race.  I had all sorts of excuses.  It was hot.  My kids were not sleeping well during the summer and I was tired.  I lost my running partner to scheduling incompatibilities and an injury.  And did I mention it was hot?  There were several times when I reeled myself back in (even wrote about my new determination), but ultimately, my motivation was gone.

But I was going to run it anyway.

I went to the race with four friends – all experienced runners.  Two of my friends were using this race as a warm up to a half marathon.  I was the rookie of the bunch, and I told them all that I would just meet them at the car after the race.  No need to wait for me.

As I lined up with 900 other runners, I felt a twinge of excitement.  Of hope.  “I can do this”, I thought.  Of course, I had never actually run this distance before.  Ever.  Not only that, but this was the first time in three weeks that my running shoes were on my feet, instead of collecting dust in the corner.

My pace started off ok and I was keeping up with my friends for the first ½ mile.  But that was it.  I slowed down considerably and watched their backs move further into the distance.  At about the first mile marker, I was toast.  I officially slowed down to a walk and started to get angry.

As an 80 year old woman passed me at the halfway water stop, I felt the wind kick out of me (literally and figuratively).  Those moments of excitement were replaced with self-doubt.  With the Dixie Chicks singing “There’s Your Trouble” in my ear, I was ready to quit.  I was embarrassed by my pace and my lack of stamina, and mostly ashamed that I had been unable to stick with my training plan.  If I had any idea where I was at that point, I would have walked off the course to go home to hide under the covers. 

You know, like I want to do many days.

That’s when it hit me.  This race was an awful lot like my daily life as a parent.  I was feeling just as overwhelmed and unprepared at that moment as I do so many days as a mom.

Those months before you become a parent are amazing - filled with excitement and anticipation.  You can’t wait to meet that incredible new life, and you spend days and nights planning what your life will be like together.  Your thoughts are full of trips to the playground, first days of school, family vacations to Disney.  Life will be beautiful and perfect.

But no one tells you that you might have to deviate from that plan.  No one expects to learn phrases like “failure to thrive” or “verbal stimming” or “sensory processing disorder”.  No one teaches you ahead of time what a feeding tube is, or warns you that you might spend days and nights in the hospital while your child is poked and prodded by various specialists.  Nor should they, really.  Those days before your child arrives should be full of that same excitement and hope that I felt at the beginning of the race.  But somewhere along the way, some of us learn that our plans for the playground and Disney get replaced by just trying to get through the supermarket checkout line once a week.

What struck me most as I was huffing and puffing my way to the 2 mile marker (yes, I’m ONLY at mile 2 by this point), is that it doesn’t matter what plans we had.  What matters is how we replan.  What matters most to our kids is that we readjust our goals and expectations to fit their individual needs, and when that stops working, we change our goals again.  Because in the long run, it’s for a good cause: our kids’ health and happiness.

This race was also for a good cause.  This was about the Flutie Foundation and all the good work they do, and not about me.  So I changed my plans.  I decided my goal was to finish in under an hour and not finish last.  This was a huge shift in thinking from my original expectation.  I challenged myself to run for one song, then walk the next.  When that stopped working, I would run for half the song, then walk.  All I wanted to do was hit that finish line.

As I rounded the final corner, the race volunteer yelled “Just up the hill and you’re at the finish!” (did there really have to be a hill at the end?).  I was almost done and I gathered every last bit of strength I had to run across the finish line.  My friends were there cheering me on, even though they had been waiting for over 20 minutes at this point.  They were as excited for me as I was for myself.  These are the same amazing people who cheer me on everyday as a parent to a special needs kid.

Because we’re all friends here, I’m not ashamed to tell you my time.  I finished just over 46 minutes and came in 805th.   My time was under an hour, and I was not last.  Mission accomplished.  I got through it one mile marker at a time, just like every day.

A few days after the race, my four year old asked me if I had won.  “No,” I told him, “but I finished it, and that’s all that mattered.”  He smiled and put his arms around me in a hug.  Not his usual “hugging-me-so-tight-I-can’t-breathe” sensory input hug, but a nice gentle hug, with a little tap on the back.

“What kind of hug was that?” I asked him.

“That was an ‘I love you’ hug”, he said.

My first one ever.  Another finish line crossed.

I’m already planning for my next 5K in April.  Who’s running with me?


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 is pretty close to understanding Twitter @trydefyinggrav.

Right On Time

Today is a holiday in my town.  Once per month during the school year, the start of the school day is delayed by about an hour.  All the kids at the grade schools, the middle school and the high school start at about the same time after 9am.  The point is to allow the district teachers and administration some built-in collaboration time.  Late Start Day.

But I see it in less practical terms.  I love moving the alarm clock an hour later, knowing the kids will get up at roughly the same time anyway.  But we can take our time, get organized and avoid the morning rush with this bit of extra time.  We can have breakfast and conversation together. I am fortunate that my work schedule is as flexible as I make it, so this later start does not cause me any childcare conundrums.

More than that, I am childishly inclined to see this day as a monthly reason to celebrate delays, a slowing down, a time to honor late-blossoming flowers and original time-tables; reason to celebrate my own later bloomer.  Owing to medical, cognitive and communicative differences, Addie didn't roll over, sit up, crawl or walk "on time," she didn't communicate "on time" and she's not on track to read "on time."  She's had a late start in all of those things and is in the midst of a late start on many others.  In my mind, this day that comes ones per month is in her honor, in honor of all humans picking their path in their own time, eschewing common schedules and deadlines.

Because I had time to get organized this morning, we were able to walk to school.  Cate walks the 2 blocks to middle school every day, but most days Addie and I drive the just-shy-of-a-mile distance to her school. Not today. We cracked out the jogging stroller that seems to be shrinking by the day (I choose not to believe that my youngest is growing as fast as she is), put on our fall fleeces and started out on our trek.

As we turn the first corner I am reminded that Late Start Day also meant the sidewalks would be filled with the other elementary schoolers and middle and high schoolers walking in the opposite direction, all of us jolly and in the Late Start spirit. A very holiday feel to share the sidewalk with so many later in the morning.  Not long on the road, I spot a knot of middle school girls.  Even from afar I could see them smile, laugh and gesture with exaggerated animation.  As I plan in which direction to lean the wide jogger to let group pass intact, I notice their necks straighten in unison, eyes locked on us. Barely audible at the beginning, the murmur sharpens as we draw nearer each other.  My ears pluck out "That's Addie."  "Remember Addie?" "Addie had Mrs So and So" "Addie was my friend’s book buddy. I got to be her buddy when my friend was sick." "Addie, addie, addie, addie."

We arrive at the axis of our paths facing each other, though I do not get more than a glance myself.  Some crouch low.   "Hi Addie!  You are in first grade now!  I go to school with your sister, Cate...."  The girls chatter while Addie wears the mild smile of one who knows she is revered.  I recognize one or two of these girls, but do not know a single one by name.

Further on as we turn onto the busier thoroughfare for the morning commute, we see many pass on bikes, waving and calling out to my tiny daughter by name.

A car going a bit too fast zoomed by as a young fellow's voice - of the high school or late middle school tone - hollers "Adddeeeeeeeeeeeee!"

This festival of belated beginnings honoring Addie and Bella and Stephen and Noah and Erika and Nathan and Alex and Caden and Emily and Joe… and all children with differences was off to a rousing start.

As we draw near Addie's school, she accepts other greetings from grownups and kids alike.  As one of the heroes of the day, Addison declines to comment in return.  In truth, her communication device is under her seat and her signing hands each gripped a small toy she chose to bring.  If she were inclined to comment, she would have dropped her playthings and signed or asked for her talker.  But with the regal countenance of the Queen on Queen’s Day, she choses only to gaze endearingly at her boosters from the comfort of her chariot. 

On a busy corner, using the energy the holiday infuses, we easily pass a small hoard of school-goers upon the crossing guard’s gesture of release.

On the other side, we spot a pair of girls just a grade or two above Addie.  I recognize them from pick up time.  They move off the sidewalk early on and lock their gaze on Addie.  They do not greet her or smile, but stand without moving, staring. 

We are upon them. "Hi." I address the girls first with a grin. Then, "Addie, do you want to say hi to the girls?" I ask.  As I guessed would happen, Addie makes no motion to put her toys down or even to wave to the starers.  I turn back to the girls "Nope.  She's with you guys!  She doesn't want to say good morning either.  Maybe tomorrow!"  This last called out in a chipper voice as we leave them behind.

This celebration of Late Starts foists on me the faith that these girls will have their late start tomorrow -  tomorrow they will greet Addie and wait expectantly for her response.

There is an outright throng where Addie lines up - the little junior kindergarten and senior kindergarten kids have to share their 9:05 peaceful line up spots with the entire rest of the school on late start days.  The teachers of those lines of tiny kids are careful with them, standing guard.  The bigger kids are still buzzing from the extra sleep, the later breakfast, the extra episode of Sponge Bob.  They weave and bob, slipping in and out of pockets and lines of people, germinating the happy lightness of the day to others. Some parents await the bell eagerly, ready to get into the office.  Other parents, for I locked smiling eyes with a few, grin the grin of those in the midst of mirthful, satisfying chaos.

For today we celebrate Late Starts!  We celebrate all who undertake them; today Addie and the other Late Starters lead us all.

{Disclaimer lest you conclude this level of delusion may interfere with my ability to care for my children - all facts and exchanges on the walk to school are factual, while my perception of it as a holiday holds less verisimilitude. The holiday is a fit of fancy, a mind game.  But it’s a mind game I get to win, hands down, one Wednesday every single month from September to May.  My kids like me better when I win.}

Farmer John Cheese And Other Joy



How is Lively doing?

Lively is stronger. He is able to shift his weight so that he can move around with a combination of rolling and pivoting while sitting. He can get onto hands and knees and back into sitting. He's acting like he's ready to go somewhere. He even tries (and almost succeeds) in pulling up to standing. Needless to say, we are thrilled with this progress.

A few weeks ago, Lively also figured out how to swallow again. He still does not take much food by mouth, but some days he is able to swallow up to an ounce of pureed food per sitting. Again, we are overjoyed by these steps in the right direction.

Last week, Lively had another swallow study. His first was in May, over 5 months ago, and at that time, he aspirated thin liquids. We were told that we had to thicken his milk so that he could manage to get it into his esophagus instead of his trachea. However, Lively completely stopped taking anything by mouth around this time, so for months, despite offering food 3 to 5 times a day, he got all of his nutrition through a tube. Because he started wanting to eat again, Lively's surgeon and his OTs ordered a new swallow study. I hoped for good news.

Lively aspirated applesauce. Previously he only aspirated thin liquids. Now he's aspirating purees too.

So why is this happening? We don't know. Lively was able to breastfeed, drink from a bottle, and eat stage 3 foods with no problem 6 months ago. A lot has happened between then and now, but we still don't know why he can't swallow properly. Everyone is baffled.

I have hope, on so many levels, that Lively's brain and body will continue to heal. I hope that he will crawl and walk and run. I hope that he will write and type and play the piano. I hope that he will eat pizza and cupcakes and drink milk from a sippy cup. I hope that he will go to a "regular" school and take AP courses, that he will have lots of friends, that he will be athletic and artistic and scholarly. I hope that he will turn down his scholarship to Harvard to attend U of M, that he will live in a dorm and come home to do laundry on the weekends.

On another level, I try not to hope these things, so that if he doesn't get there, I won't be disappointed. Or devastated. We're coasting right now. We've been out of the hospital for over 2 months. Lively has graduated to a G-button. He is interested in eating. He is stronger. These things give me hope. Also, he sucks applesauce into his lungs. Did he have another stroke? Was some swallowing mechanism damaged during one of his multiple intubations? Don't know.

I wish I could have faith or hope or the kind of certainty that some people have that everything is going to be alright. I do hope. But I don't count on everything working out. The world doesn't seem to be working that way right now. So we coast, and I try to relax as much as I can, and help Lively make as much headway as possible before we hit another bump.

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.