Saturday, April 30, 2011


So much going on  right now that I am not at liberty to discuss in public forums; it takes all my energy sometimes to formulate short sentences let alone a full blog post. Instead, I'm writing short poems and snarky tweets. 

This is a poem for my special mama friends who have helped me through so much. I love them for keeping me sane and making me laugh when it gets to be too much.

I can't emphasize enough how important it is for all of us to find our own "tribe" of people who get the struggles and frustrations, the joys and the miracles we all encounter in our lives as parents to our very special children.  Finding my tribe has saved me.

(an original poem by Niksmom)

Thoughts, like fierce winds rage
Inside my head, swirling
Like so many grains
Of sand into a funnel cloud
Leaving swaths of destruction
Linking words into coherent thought
Seems a distant memory

My body is parched
For sleep
Feasting on itself for energy
Like carrion in the desert sun
Leaving skeletal fragments
Of thought and action
Mere outlines of what should be

Like ancient mummies
Swaddled and encased
In endless worry my heart
Has become heavy
I cannot lift the weight alone
I need my trusty handmaids
To ease my ache with kindness

Love, laughter and kind words
Lift the gossamer veil of my pain
Raw and honest words pierce
My armor penetrating the gloom
Refreshing, reawakening
Refocusing, reshaping
My outlook

An oasis in the middle
Of this barren desert which sometimes
Threatens to desiccate my being
Friendship keeps my soul from withering
And blowing away like the dust
Of so many pharaohs long gone
You are the riches in my journey
To the other side



When she's not busy fighting battles on behalf of (and sometimes with) her son, Niksmom writes about life at Maternal Instincts.

Friday, April 29, 2011

Spiritual Parenting

When Riley was four, and had been screaming non-stop for over two years, I used to sit in her room at night, after she was asleep. I'd envision her surrounded in white light, us surrounded in white light. Loving each other. It was my desperate attempt to connect with her soul, because often our days were not pretty. I'd have conversations with her, and with God, in my mind,

"C'mon. What is it you want me to learn? Haven't we had enough of this?"

If I'm being honest, it was also a desperate attempt to change her. To make her just stop screaming. Please.

Along those lines, my husband Todd and I would meet at 10PM almost every night, and visualize. We'd take turns.

"Okay...she's 20, he's 18," he'd say...and we'd imagine them leading good lives, we'd dare to describe it in detail.

"She's 12, he's 10," I'd say, and go on to describe both children thriving.

We saw it. We hoped. Only sometimes I couldn't. On rare occasion, Todd couldn't. But usually one of us could. We weren't often down at the same time. Again, the emphasis was on her. I wasn't really visualizing a change in me. 

At some point it became clear this special needs parenting journey was more than I could deal with alone. Though I'd been casually studying metaphysics before she was born, Riley's autism put me on a sometimes frantic quest for a feeling of connection with God. I read. I studied. I did daily workbook exercises. I prayed. I wore a watch with a timer to remind me to do affirmations upon the hour. I began a meditation practice.  

I began to change me.  

I no longer believe I'm being taught lessons by a God who finds me lacking. It's more like a God who encourages me to be all I can be. To see. To express who I already am. When I remember to be "who I really am" with my children, nothing beats the feeling. Those moments of pure connection are heaven on earth. And of course, being human, sometimes I forget. 

Recently I discovered this amazing website on spiritual parenting. It's a smorgasbord of stories, affirmations for kids, games, archived radio programs for parents to listen to. It goes on and on. Good stuff.

I believe everyone has their own path to God. Parenting has been mine. I would never imply my way should be your way, but if any of the ideas in the above website speak to you, I am delighted. I love finding treasures and passing them on.


Thursday, April 28, 2011

Invisible Heroes

“I think heroes are people who do good or necessary things at great personal cost. Heroism must be judged by the courage and grit required to do what needs doing.”

 Sound familiar to any of you?

These are the opening lines of the book Invisible Heroes by Belleruth Naparstek but the words could also best describe a parent of a child diagnosed with special needs.

From time to time, I stumble across great finds, tools that actually help me in my journey to raise my children. This book is one of those rare treasures.

I wanted to share it with all of you.

In her book, Invisible Heroes, Belleruth Naparstek talks about trauma, what it is and how it can affect us.

When my son Nicholas was born with Prader Willi Syndrome, I never realize that the difficult experience of his birth, the loss of a dream and the overwhelming fear of the future, had caused me to experience a deep and devastating form of trauma. I never realized how living day-to-day caring for my children with special needs had created a kind of constant traumatic lifestyle. I never realized the negative effect this stressed way of living had on my body, my mind, and my precious spirit.

I never realized, that like all of you, I had become an invisible hero.

In her book, Belleruth Naparstek explains how “overwhelming trauma creates such daunting fear and heart-stopping distress that it produces legions of heroes whose every day is a test of their mettle, commitment and courage.”

The author explains that the normal way of dealing with trauma is to talk about it. But because of the unusual way traumatic experiences are stored in the brain, traditional talk therapies may actually make symptoms worse, potentially causing flash backs, anxiety, depression, panic attacks and more.

I often wondered why from time to time I would feel this way, particularly after talking about the birth of my son.

She talks about the emotional aspects of trauma…immeasurable sorrow, deep grief, rage, numbness, shame and humiliation, loneliness, alienation, despair, helplessness, guilt, blame, regret, a heart ripped open, all of which I have experienced.

She talks about the behavioral aspects of trauma…isolation, disrupted relationships, over-control, avoidance of intimacy, substance abuse, addictive behavior, learned helplessness and my personal favorite, compulsive busyness.

She also talks surprisingly about some of the gifts in the rubble….like joy, compassion, heightened creativity, survivor power and spiritual connection. These gifts I also feel from time to time.

She recommends a type of relaxation technique that uses “guided imagery”…..using pleasant visual images and thoughts to replace the upsetting ones.

These imagery-based solutions use the right hemisphere of the brain-perception, sensation, emotion and movement-rather than the left side’s standard cognitive functions of thinking, analyzing verbalizing and synthesizing…Trauma produces changes in the brain that impede a person’s ability to think and talk about the event …Imagery uses what’s most accessible in the traumatized brain to help with the healing.”

She uses these tools as an exercise in helping to heal hurt hearts.

It is an interesting concept. The information she provides about dealing with trauma has been extremely valuable to me. The book is easy to read and full of valuable insights and tools.

My lifestyle of a parent of a child with special needs is filled with continuous heart-stopping trauma. There are EEG’s and surgical procedures, behavioral challenges and therapy sessions and of course the added stress of constantly fighting and advocating for my children. This trauma wears down my body and my heart.

Having good health is vital to me and to the needs of my precious children since I want to care for them for the rest of my (hopefully) long life. I have discovered lately that my overall well-being is directly proportional to how competent I am at diffusing the trauma I experience on a daily basis.

Invisible Heroes has helped me to realize that since I am so willing to try anything to help heal my children, perhaps I should consider doing the same for myself.

Every now and then I will get a good case of the PWB’s (Prader Willi Blues). These are times when I obsess about the syndrome. I obsess about fixing my child. I feel like I lose control over everything and spiral into a black fog-like depression. I withdraw from my family, my friends and the world. It is an overwhelming darkness that challenges my ability just to get out of bed in the morning.

In an effort to dispel the Prader Willi demons, I have tried creating my own “secret garden” in my mind. It is my own empowering version of  Belleruth’s “guided imagery”. 

It goes something like this….


My Secret Garden

I have a place in my mind that I go to......

Where there is no noise.

It is quiet.

No voices from doctors requesting more tests.

No voices from the indifferent with words that hurt.

It is a place that is sunny and warm, a place where my children can run and play happily together.

In my mind they are laughing, free from the crippling effects of their disease.

Nicholas is healthy and strong. He is muscular and slim, no longer plagued by constant hunger. He is running and jumping while he throws a baseball up into the air and catches it with ease.

Weston is calm and relaxed. He is lying in the fragrant grass on the banks of a lazy stream where he is resting and reading a book.

My garden is filled with healthy green bushes whose buds burst with blossoms of colorful flowers, red, orange and yellow.

The air is filled with their perfume.


There is a narrow dirt pathway that winds through my garden. It is a path only I can follow. Along the path are benches. There is one placed under the shade of a sturdy oak tree that sways gently by the breath of warm summer breezes.

There is another bench perched on the shore of  a sparkling blue ocean. The waves crash onto the shore in rhythmic pattern, slowing the pace of my racing heart.

In my secret garden my mind is released from the day-to-day routine of tracking doctor appointments and managing medications. There is no need for worry. The health of my children is assured. My family is safe.

My secret pathway leads to a small stone cottage with a garden by its side. In the garden, my father, now back to life, lifts a brilliant red tomato the size of a softball. He smiles and waves to me.

Inside the stone cottage, my mother awaits, her vibrant spirit revived, her mind brilliant and clear, freed from the ravaging effects of dementia. We sit at the wooden kitchen table to sip coffee while we hold hands, talking and laughing together.

This is my secret garden, my sanctuary.

It is the place in my mind that I go to when I am fatigued by the incessant stress that accompanies the role of raising children with special needs.

It is a place where my body is no longer tense.

My shoulders are relaxed.

My mind is free from worry.

There are no obligations or appointments.

No thoughtless words from others.

There is only love and peace

and serenity.

I am reborn, my soul is restored, my heart mended, my mind clear.

It is a place where I find my lost inner strength, my precious healing magic energy that helps me to endure.

It is a place in my mind that I go find myself.

What does your secret garden look like?


Thank you for reading, please come visit us on our blog at

Wednesday, April 27, 2011

To Not Have Him

This month I am posting part of an essay I'm working on that was inspired by a blog post about a conversation with my oldest son Abe a year or so ago.


After dinner one night, as my oldest son Abe is emptying the dishwasher, he casually asks me if I know the chance of someone being diagnosed with autism. 

I know it is high, but can’t remember exactly.

"One in 100?" I guess.

"One in one hundred fifty," he tells me, his 11-year-old eyes uncharacteristically wide with a mix of concern and awe. 

We’ve just finished reading Al Capone Does My Shirts, a novel set in 1935 about a boy who lives on Alcratraz with his mom, dad, and sister who has autism.  Abe learned about autism from that book, and then he saw an Autism Speaks commercial in which they compared the odds of a young boy later winning a golf championship to that same boy eventually having a child diagnosed with autism. For an athletic kid who is confident he will play professional baseball someday, this commercial had an impact.  Something Abe considers rare, like having a kid with autism or any disability, is actually thousands of times more likely than him ever playing pro sports.  This surprises him.

“Wow.  One in one-fifty”, I repeat back, mirroring his awe.

Next he asks when we learned that his nearly nine-year-old brother Oscar had Prader-Willi syndrome.  While Abe might be new to the language of autism, disability has been a part of his life since Oscar was born.  Prader-Willi syndrome is a rare genetic disorder that causes developmental delays, cognitive impairments, low muscle tone, learning disabilities, behavior challenges, short stature, slow metabolism and most notably, insatiable appetite.

Oscar exhibits all of these characteristics to some degree, but he is also a hardworking, determined and fun kid who loves animals and music.  He says he’s going to be a zookeeper and a rock musician when he grows up.  If he has his way he’ll take over for Green Day’s lead guitarist Billy Joe Armstrong and run the San Francisco Zoo. I’m already scheming about how to help him get as close as he can to those dreams.  (Perhaps a decent garage band and a volunteer position as a Zoo Docent will do?) 

So when did we find out he had PWS?  The answer to Abe’s question rolls off my tongue more easily than my own birthday. "We learned about PWS for the first time when Oscar was just five days old. The diagnosis was confirmed when he was two weeks."

"Hmm", Abe muses, lifting the silverware basket out of the dishwasher. "So he got it after he was born?"

"No, it happened in utero, when he was still inside me." I lean casually on the counter then, watching Abe sort the clean silverware into the drawer. I am balancing attentiveness and restraint, aware that if I appear too eager he might stop talking. Pre-teens are funny that way.

"So, you did it?" he asks cautiously, looking up from the drawer, aware of the gravity of that question.

"Well, kind of, but not really...." I reply.  I explain, as I did a few years ago, that my egg had two chromosome 15s by accident and his dad’s sperm only had one, as it was supposed to.  We talk about how the wrong chromosome 15, the paternal copy, got kicked out, leaving Oscar with two maternal copies, and PWS.   I even tell him that the official type of PWS that Oscar has is called Uniparental Disomy, or UPD, literally meaning two chromosomes from one parent, me.  The more common type of PWS occurs when there is a deletion of genetic material on the paternal chromosome.  But either way, paternal genes are missing.

“So, Oscar, got lucky, then, having this kind of PWS, right Mom?” Abe asks, remembering that when Oscar was born we were told that PWS by “deletion” is sometimes considered to be more severe than UPD.  Abe reminds me of myself so many years ago, searching for the hope amid the devastation. 

But Abe doesn’t remember that when we had this same talk three years ago, he blamed me for Oscar’s disability.  He pounded the arms of the faded green chair where he was sitting in our living room and kicked the huge pine toy box we use as a coffee table. He cried. He raged.  It was my body that messed up. “It’s all your fault!” he screamed at me while I sat adjacent and tried to rub his leg. He didn’t want me to touch him and he jerked and twisted his agile body away, out of my reach. 

Three years ago, Abe was a third grader struggling with social issues while Oscar had just started Kindergarten at the same tiny one hundred-student school. I don’t know if Abe’s grief surfaced that year because his disabled brother had invaded his school and friendships.  Or was it because Abe suddenly realized that Oscar’s best Kindergarten buddy Karl was everything Oscar would never be?  While Oscar stutters, often has a spaced-out look, and can’t follow the complex social and physical maneuvers required to play team sports, Karl is compassionate, articulate, and a gifted athlete that ignored the unwritten playground rules and inserted himself into the third-graders’ games with Abe’s friends in a way Oscar never could.  When I heard the stories of Abe helping Karl join that sports-crazed group I knew Abe saw in Karl the brother he would never have.

I understand this grief, this grief of contrast, of missing what could be rather than appreciating what is.  When Oscar was born quiet, blue, and limp, his arms dangling lifelessly at his sides I could only think of Abe’s lusty cry, tight fists and chunky thighs.  When Oscar’s tiny mouth couldn’t close tightly around my nipple I could only think of Abe’s insistent suckle.  While Abe woke me every two hours to nurse, I woke Oscar to eat. He was too weak to nurse, too sleepy to suck and was tube fed for those first few weeks. 

Abe is much calmer, now, having processed his intense feelings in therapy and with me in the last three years.  I tell Abe now that Oscar would probably not have survived if one of the chromosome 15s hadn't kicked out.  Oscar would have had trisomy 15, and those fetuses don’t usually make it to term.

A shadow falls over Abe’s freckled face and he looks up at me from where he is chucking tupperware haphazardly into the cupboard.

"Wow," he says, "That would have been really sad. To not...have him."


After Abe finishes with the dishes and our conversation, I help Oscar settle into bed for the night.  At nearly nine years old he is of average height and slim build.  He is easily distracted by food but he does not steal.  Not yet, I remind myself often, as almost all people with PWS eventually do forage for food.  And though Oscar is weaker and slower than his peers, he is stronger than I’d ever imagined possible.  He likes to run, scooter, and swing. He learned to ride a two-wheeler bike just a few months ago.  He definitely has learning disabilities and areas of cognitive impairment, but he’s also an enthusiastic, hard-working, and well-liked student who reads at grade level and loves math even if he struggles with it.  

Oscar climbs into his bottom bunk now and snuggles up next to his crew of eighteen stuffed giraffes.  Giraffes are such gentle creatures, graceful despite their awkwardness, a bit like Oscar.  He’s been collecting them for five years now, acquiring a few a year from friends and family, and now the herd takes up more than half the width of the bed.  He leans over to line them up just right on their special pillow while I read him some math problems that I’ve made up for him.  I call it "Zookeeper Math" and there are four word problems on the sheet. We may never get around to actually doing them, but I know he will enjoy hearing them, since he intends to be a zookeeper when he grows up.

This one is his favorite:

Zookeeper Fred needs to feed the giraffes. He brings 7 acacia tree branches to the giraffe exhibit. But when he gets there he sees that there are 12 giraffes in that exhibit. Silly Fred!!! How many more acacia tree branches does he need to go get?

By the time I've read all four word-problems, Oscar is giggling so hard his chin drops to his chest and he falls over on top of his giraffes. When he laughs like this his muscles get really weak and he sometimes even falls to the ground. It’s all part of PWS and doesn’t scare me like it did when I thought he was having seizures. These days I know the sudden weakness is just a sign that he is really enjoying a joke or a story.

I tease him them,  "You love your Mama, don't you Oscar? You love your Mama!!"

Oscar keeps laughing, unable to stop, while I pull the covers up over his shoulders and dot his cheeks and forehead with kisses.

Abe is right, I think to myself, my eyes stinging with tears even though I’ve had this thought many times before.  It really would be so sad to not have him.


Mary Hill blogs about Prader-Willi syndrome and life with three children (now ages 12, 10, and 6) over at Finding Joy in Simple Things.


Monday, April 25, 2011

Good grief. Bad grief.

Recently, I’ve been working through a bit of grief counseling.  “Good grief” and “bad grief” are terms I’ve coined as a result of what I’ve learned thus far. Good grief helps me be at peace with the changes in my life while bad grief negatively affects my relationships in the world - whether they be physical, emotional or spiritual.

After attending a funeral last week, my good-bad-grief process went into overdrive. I have been successfully bereaving for the person who passed away (and their family), while also working some of my own unresolved issues - ranging from dead relatives, to accepting my mother's passing to understanding how to grieve for my children.

When I became a parent of one special needs child - simultaneously losing a twin when she was born - I thought my grief process was exceptionally unique, but I now realize that all losses are equal. Until I figured out that I was in control of my own grief process, I wanted to blame my parents for not addressing this life-long issue in my upbringing.

At just eleven years old my view of death was skewed after I lost an aunt at a very young age (cancer). I attended her funeral but didn’t understand the reason for the ritual - other than it was a religious custom.  Also affecting my understanding was that my parents never really talked to me about the emotions, loss, stages, feelings, guilt - with exception to saying “[person] is in a better place now.”  

That first event shaped me because I watched other men in our family never show or talk about their grief, as they felt the need to “show strength” for everyone else. As a result, I forgot to let my own emotions show and tended to push my feelings down into a dark corner of my being, suppressing them, carrying them around like some burden that I had to bare until I found myself at the end of my days.

Working deep into my thoughts, what I realized is that I had created obstacles for not grieving over the loss of my twin daughter. I felt I was too busy ‘trying to support’ everyone else, using what I had learned from others while also trying to figure out how to raise a daughter, who would later have the diagnosis of cerebral palsy.  I never grieved over my hopes, dreams and expectations for her twin sister who passed.

What’s more, is that my relationship with the twin who died was unresolved - having not realized I had been building a relationship with her ever since we found out we were having twins. I had made numerous physical connections and built something up in my mind but because I never had the physical connection with her, I didn’t think the relationship ever existed.

That realization may not seem like much, but when I started this process I thought I was going to be dealing with unresolved grief for my mother who passed away of lung cancer four years ago. But because I wasn’t afraid to really dive in a deal with my feelings, I found grief where I didn’t know it existed.

Now, I can move on and begin the process with my one-year old, who also has cerebral palsy. I can resolve my issues of failed dreams, hopes or expectations that she will not be a normal child - all of the criteria created as I envisioned a child fulfilling the unlimited capacity of my imagination.

To me, the difference between good grief and bad grief is that good is the kind that you don’t bury.
Instead, you pull it up to the top by talking about it, sharing it with others, writing about it and learning to accept it for what it is – a physical, emotional or spiritual end that needs to have resolution in order for you to peacefully move on (with special needs children it can certainly be categorized as hopes, dreams and expectations or much more).

Bad grief, on the other hand, is the kind that can fester and cause you to live life harder because you have emotions or communications that are unresolved. The bad affects all of your relationships over the long haul. Think about loss of any kind – physical, emotional or spiritual – and you might find that they have had a dramatic affect on your life.

While I’m by no means an expert in grief counseling, I can tell you that I’ve had plenty of experience with death and loss.  As such, I recommend reading The Grief Recovery Handbook (I have no affiliation, but I believe in the process) and doing the work it requires.  If you follow the framework, you will start to see a difference in how raising a special needs child is one of grieving on many different levels.

The best thing I've learned is that even though we parents have a physical relationship with our children, there are tremendous types of losses we endure. However, when we don't deal with them, we not only do a disservice to ourselves but also our children and families. So far, my work has been very hard, but it’s been well worth the effort and taught be the difference between good and bad grief.

Tim Gort writes about raising his two daughters with cerebral palsy and his familie's life at The Gort Family blog.

Bodies of Their Own

Since my son was 3 and my daughter was born their bodies have been in a tug-of-war with themselves their disease, and the medical community. Too many lab draws to count, so many tests your head would spin, and an over abundance of procedures, surgeries and treatments to keep them alive.

I've always had the reaction to it that you might think - I've been a protective mom when I had to be, a consoling mom when needed, and I've been the one who has had to instigate the pain as well, by holding them down, giving them painful shots and forcing them to disrobe and be seen by so many people that I literally cannot count. While I've tried to do it respectfully so they maintain their dignity at all times, I grow ever concerned about how they veiw and protect their bodies.

I've been thinking about that a lot lately as they mature and as we get more stable in our household. See, we're able to do more now than in the past 2+ years and so there is a lot of coming and going. Soccer practice/games, scouts, playing with friends, sleepovers and swim team, just to name a few. There are lot of clothes changing happening.

Because our life necessitated it, we've always been the kind of family that changes clothes in front of each other out of convenience, time-saving measures and less hassle. Bathroom doors stay open (well, for me and the kids anyway), and changing clothes into uniforms or practice just kind of happens. It mostly happens in our living room because we keep the kids uniforms downstairs away from their bedrooms, where we can keep up with them. We also help them change a lot. Fine motor and gross motor issues do that to a kid and their parents. We help them more than other parents have to help their kids.

I began thinking that the kids were a bit too open about changing in front of each other because they change anywhere because of how I handled it. But lately I don't think so. I think that their medical status just makes this type of thing (no modesty) easier for kids like mine. That makes me a little bit sad. They are so completely used to disrobing for medical professionals that they don't even register it as anything untypical therefore there isn't usually a hesitation. While luckily my son's modesty has finally kicked in, we've had to help our daughter recognized when to be modest.

I wonder how, as they move into puberty, how they view their bodies. Do they think of their bodies as just a place for medical procedures to take place? Like they don't really own their body and instead their disease does. Or as in our case, their new kidneys do because now, we're all about protecting those new kidneys -- we and the medical community says so all the time.

I suppose I could look at it the other way; that they were comfortable with their bodies and therefore less modest around each other, because it really didn't bother them to change with doors open and to run in and out of showers while they can be seen. The kids don't pay attention to each other and we make a point to try to get them to shut doors. But I think the fact that my kids have the medical history they do adds to my opinion that they don't really think of their bodies as their own.

I'm wondering for other kids who have medical special needs if anyone has noticed the same thing in their kids; a nearly complete lack of caring for privacy...

Saturday, April 23, 2011

A Small Gesture Can Make A Huge Difference

One of my biggest fears as a mother is not being able to provide for my children. Given the current economic environment, and the fact that my employer is laying people off at an alarming rate, this fear is ever present.

But, I still do have my job. I am still able to provide for my family. Little has changed other than the cost-saving measures I have put in place over the last year. They are small things – like buying generic or store brands at the grocery store – but I believe that it can make a difference.

Two things happened this past weekend however to make this disastrous economy rear up and slap me in the face.

First, a friend of mine that is in her 50’s and who had worked for IBM for over 20 years was laid off. Her husband is in real estate, and not being the most eager beaver, almost never sells anything. That is nothing new, but now that my friend has lost her job, the meager amount her husband brings in barely buys the groceries.

My friend has searched and searched for a job with no luck. She is currently a sales clerk at a clothing store and bringing home minimum wage. The family is living on an equity line of credit, unable to plan for college for their high school senior daughter, and as she said, probably two months away from losing everything.

The second slap in the face happened when we posted something on We had been going through stuff in our attic, including all our Christmas decorations, and decided that we had too many lights, cookie tins, stuffed Christmas animals and other general decorations. We decided to post these on and give them to the first person who responded. Within an hour, 55 people responded asking for the decorations. Each one had a story, and the stories were all very sad, e.g. “I’ve been laid off, can’t provide Christmas gifts for my children and the lights would make them so happy.”

Fifty five people in an hour – fifty five people who already know in April that they won't be able to provide Christmas – too many children to count who won’t know the joy of finding gifts from Santa – fifty five families who just want some lights to put a smile on the faces of those children. It made me want to go out and buy lights for everyone who responded (which of course I can’t do).

What I can do is to remember these events and do whatever I can to brighten each day for someone else. And I urge you to do the same thing.

It can be something small and simple – take some food to a foodbank, visit a neighbor who spends most of their time alone, call an old friend, help out at a homeless shelter, befriend a child in a group home. But I challenge you all to do something.

Even when times are bleak, I believe we can find ways to help others. I would love to hear your stories of helping….

Friday, April 22, 2011

Autism Fatigue

When you have children with Autism, April is supposed to have special significance as it is Autism Awareness Month. There are walks, fundraisers, blue lights, and everything puzzle related--from pins, car magnets, coffee mugs, earrings and more. Here's the thing about Autism Awareness;I am one of many parents who are painfully aware of Autism. I live with it 24/7/365. And while the premise of raising awareness for others is justified and worthy;I have to admit to having some Autism Fatigue right about now. My colleague and I were discussing all things Autism in the office one day and I asked her what her plans were for "recognizing" the month. Since April 2 was World Autism Day, we were reading about all sorts of plans and projects people from all over the world. Her response? "Autism Awareness happens everyday in my house. I live with it." Well put. We are weary veterans of the constant battles one must endure when you are the primary caregiver, advocate, and voice for your children with Autism. Right now, I'm a little weary. I'm tired; exhausted really. Emotionally, physically, mentally, and spiritually. I'm exhausted from the recent events in our life. I'm sleep-deprived, frustrated, teetering on the brink of explosive rage and running desperately low on hope. I'm drained from the last ER visit with B. and having the ER nurse remember us from past visits. (At least, bless her heart, she gets it and hasn't seen a need to call CPS on my Energizer Bunny-Running Calamity of a younger son.) It's a double-edge sword when your family rings a bell with medical professionals. However that is better than having to explain things to someone who should know better and feeling like your life has morphed into some bizarre variation of the scene from Rainman when they ask if your child's "artistic." I'm already tired of "team" education meetings and we have at least 2 more to go. I'm tired--as I'm sure countless thousand others are as well--of having to be proficient in a second language I don't recall ever being offered in school--Special-Edese. I am sick of acronyms too--IEP, CPSE, CSE, EI, OT, PT, ST, MT, IHP, FBA, BSP, and the rest. I find myself speaking in a jargon that an average lay person wouldn't be able to follow with terms like evals, differentials, meds, standard deviations, severe sensory seeking, safety concerns, 1:1 interaction, social deficiencies, etc. If I wanted to explain my children to someone like my mother in proper terminology, I might as well be describing 2 aliens since she wouldn't follow. I'm tired of having to plan every damn thing. I'm tired of the precision of our everyday excursions. There are military maneuvers I would bet that have far less planning for every possible scenarios. I'm tired of the mental checklist I keep in my head of what's in the house, what they will eat, what I can find along the way. Heaven forbid we run out of chocolate Teddy Grahams or mini-Hershey bars (only in the brown wrapper thank you very much) or strawberries, regardless of season. I am so frustrated that I must always have an endless bag of tricks and distractions for any trip, for any occasion. I HATE when the power goes out and I forgot to charge the portable DVD player. I am beyond sick of explaining why I pack chicken nuggets for every holiday gathering with family. It's been a decade now--GET OVER IT!! I'm tired of sensory needs--being over stimulated (usually in public) and the seeking behaviors. I'm fed-up with meltdowns. I want one. I feel I've earned one. (Maybe this is one now.) I'm tired of explaining things over and over and over and over. I am weary of pull-ups. I'm sick of buying them, lugging them, stashing them in the van and one in a coat pocket, and hearing how my little niece is almost out of them. Good for her; we're not. I am drained by countless Thomas the Tank Engine, Dora the Explorer, and Backyardigans songs with B. I'm exhausted by C. striving toward puberty but not understanding that repeating every saying will only get him in trouble. What happened to the Disney channel? It's not so Disney anymore. I hate a lot of mindless teeny-bopper pop songs that I must endure to decipher lyrics and explain what they mean. My dream soundtracks sound like some eerie nightmare of a twisted old Twilight episode. Many of us have far too much awareness of this month's focus. I've come up with some creative ideas for sharing that wealth of knowledge. Funny, but no one has taken me up on my offer to let them experience my world first hand by providing respite for a day or so. THAT would truly give you some Autism Awareness, along with processing issues, ADHD, medical needs, and other countless joys too numerous to list here. Lately, it has been tough to be part of the puzzle-pin sorority. As if all of that wasn't enough, I've experienced my first diagnosed migraine on top of it the past week. Really? Well, thanks for the rant and vent session. I'm off to cook dinner and to try to make the whole crew happy with the meatless requirement of Good Friday. And just so you don't think it's all gloomy here--B. has taken to asking for "his friend, Mommy." Awareness doesn't always mean sunshine and rainbows and it isn't always measured in large gestures and strides. Sometimes it is making it through another day and having the courage or tenacity to do it all over again. At least there will be chocolate to raid in a couple of days to fuel the journey.

Thursday, April 21, 2011

Surrender All

When I drop Carter, age 8, off at school, we enjoy a ritual of words and kisses.

"Work hard!" I say, and he gives me a hug and one kiss.

"Learn lots!" I say, and he gives me a hug and two kisses.

"Have fun!" I say, and he gives me a hug and three kisses.

I said the same words to my older kids (Jacob, 17; Abbie, 15, and Spencer, 13) when I took them to school (though the hugging and kissing rituals are Carter's own invention) when they were young, but not anymore. Even on the rare occasions that I drop them off at school, they are far too old and sophisticated to enjoy the sing-song goodbyes and silly habits of their youth.

I don't know where those three instructions originated. Maybe my mom said them to me when I walked out the door every morning to get on the school bus, or maybe I made them up myself. Wherever those phrases began, I've come to see them as a nearly complete recipe for a successful day, and a necessary help as I learn to surrender to the vagaries of life as the mother of a child who has emotional, behavioral, cognitive, and motor disabilities and delays.

I was like most parents expecting a child: full of hope. I assumed that my children would go further in life than I have; that they would do more, experience greater success, and enjoy happiness far, far beyond my imaginings.

Funny thing is, on the way to my children's golden future, life intervened. Even in the years before Carter joined our family, and in spite of my best efforts, my kids were mostly.....ordinary. They all had talents and strengths, and of course their other parents and I found them to be exceptional in thousands of ways, but for the most part? Ordinary kids.

Instead of feeling disappointed, I was relieved. Delighted, even. None of them was dogged by unrealized genius. They were well-liked by their teachers and peers; they got pretty good grades; they were happy. I began to understand that my real goal for my children was that they grow up to become themselves, people who knew how to work and learn and play; to love and be loved. I surrendered.

But now, in the wake of the profound chaos of the past three years of our lives, when Carter revealed himself to be seriously ill and our family experienced a rupture of unimaginable proportions, I've had to learn about surrender in new ways. 

Nothing about living in the moment and letting go of my regrets and expectations comes naturally to me. Far, far easier for me to lay awake at night rethinking past decisions or fretting about the future than to breathe deep and count my blessings in the moment. I worry about how I will manage to keep Carter safe in the future, but slowly, slowly, I am learning to interrupt those thoughts by reminding myself that he is safe right now, today. 

How can I hope to help Carter stay stable and balanced if I am not stable and balanced myself? 

The simplicity of that three-part recipe helps me: if I have worked hard, learned something new, and had fun, then I am a huge success. Just like I have learned not to measure Carter's academic ability against that of other children his age, but only to his own progress across time, so I can learn not to measure myself against anyone's expectations. 

Tuesday, April 19, 2011

Places We Cannot Go

Seizures have to some extent become a routine thing around here-- not a topic I ever imagined would be run-of-the-mill when Jeremy and I started talking about having a family.  Usually Connor's seizures don't last more than a minute or two, but last night he had one lasting a terrifying sixteen minutes.  This is by far the longest seizure he's ever had. 

He's caught a bug of some sort and is running a low-grade fever, which often causes his seizures to spiral out of control.  Though I've seen him have literally hundreds of seizures over the last few years, last night I learned that they still have the power to shake me up, to make me wonder if this is it; we've run out of time. 

We've been told on repeated occasions that Connor's seizures could potentially be extremely dangerous for him.  He often stops breathing during them, though thankfully that was not the case last night or I would probably be writing a very different post for today.  Connor's actually been doing really well in the last few weeks and I'd started to relax a little bit, though the facts of Connor's probable shortened life-span are always resting somewhere in the corner of my brain. 

Seizures are only one of the risk factors that make up the long list of reasons doctors give Connor a guarded prognosis.  I try not to think about them all too often; I wouldn't be able to function if I dwelled on them.  But those thoughts come crashing back whenever we have an emergency like this.

During his seizure this time Connor was actually aware of what was going on, he was blinking, squeezing my hand and looking at Jeremy and I as his body jerked out of his control.  He was obviously terrified, though his face relaxed a little while we sang his favorite songs to him.  He was conscious until the last minute or so, and then his eyes snapped forward and his hand fell limp. 

The seizure ended so abruptly that the sudden absence of movement unnerved me.  Connor lay totally still and unresponsive on the floor, his eyes wide open and fixed, pupils completely dilated.  And most terrifying of all; my shaking fingers couldn't find a pulse on him.  I thought for one awful moment that his heart had stopped.  Then he blinked, sucked in a deep breath and began to cry. 

I knew after that he'd be okay. 

And that meant I'd be okay too; that I could set those feelings aside for another day when I'd need them.  Once again we'd been granted a reprieve.  Once again our son had returned from that far place he travels to where we cannot follow.  I hope we have many more years with him before he takes that final journey.  He is a child enjoying life far too much to be done living it.

So after the emergency crew left and my son lay across my lap in the deep sleep of the utterly exhausted, I thought back to the moments of his birth; the first time he lay limp and blue on my chest.  Warm, and solid, and utterly still.  The doctor raced him over to where the NICU team hovered while Jeremy and I were left waiting in devastating limbo.  And then finally, after a few agonizing minutes and against tremendous odds, we heard a single, wavering cry-- our child coming back to us.  It was the most beautiful sound I'd ever heard.

It still is.  It still is.





Jess blogs about daily life with her family at Connor's Song.

Sweet Reward

Pudding's reward chart had been working wonders, but there were still some activities which required extra motivation on her part. At the end of the week, she had completed 3 out of her 5 goals. Had we overwhelmed her with too many chores?  Or was this her way of testing to see if she would get the prize anyway?  The reward chart is so new that it is impossible to tell, we're still in beta testing mode. 

We decided that she would have a reward, but not the toy she would have acquired had she carried out all of the tasks every day. Our local ice cream shop has a sorbet that is gluten, dairy, and egg-free that we pass off as ice cream to her.  We knew she'd be happy with that sweet treat, as long as it was pink and had sprinkles on it.  Ice cream always has to be pink with sprinkles.

As Cubby took his nap, I suggested she accompany her Daddy (who is in charge of religion and frozen desserts) to get ice cream. She refused. Perhaps I wasn't clear that she would get some too, so I let her know that she would, as a reward for her tokens. She declined once again. I explained that it was pink, that there would be sprinkles. Still she declined.

Maybe it was because of her separation anxiety monster. After a long stretch without the beast, it has once again taken hold of our girl. It seems that just as it loosened its clutches on her brother to enable him to sleep through the night, the monster returned to attacking her. Now she can't sleep without me by her side. She flinches if I reach for my coat or shoes, and requires constant reassurance that I'm not going anywhere without her.

I suggested that Daddy could stay home and she could go with me. She rejected this idea too. By now she was upset, frustrated that we couldn't understand what she was trying to communicate. Could it be that she no longer liked ice cream? I found it hard to believe, so I checked with her. Yes! She likes ice cream and yes, she wanted to go for some! Okay. Spectrummy Daddy and I were at a loss. Finally she let us in on the source of her sorrow.

"Cubby wants to get ice cream."


Her brother.

She was thinking about her brother.

She was thinking about her brother!

My girl who has for so long lived in her own world, and refused to let her brother be a part of it, was upset that we weren't including him on this treat. All the times I had tried, and failed, to get her to allow him to be part of her life.  Before he was rejected and ignored, now she wanted to share her enjoyment with him.  She was upset that he wasn't included.  Here was my reward, and there is nothing sweeter.

We waited until he woke up, then the four of us went to get ice cream. We asked for two spoons for the strawberry sorbet, but it quickly became clear that she wasn't prepared to let Cubby have any. A second serving was swiftly ordered for her brother, before the magic of the moment was lost.

Sharing each other's world is enough to ask, they don't need to share ice cream too.

Spectrummy Mummy blogs daily about the adventures of Pudding, and her nearlytpical brother, Cubby.

Monday, April 18, 2011

Spinning Plates

When people ask me how many children I have, my short answer is, “Two.” And that is, indeed, the number of children I gave birth to. However, the longer answer is that I actually have two only children – two children whose lives and needs are so different, that I work to keep them spinning in separate orbits – seldom touching. I can’t think of the last time I took both kids to do something together, or had them engaged in something at the same time at home. It is rare they are even on the same floor of our house.

Make no mistake, they are siblings – they love each other, they even squabble like brother and sister on occasion, but for the most part, they live very separate lives and it is my job to keep both of their separate lives, spinning in the right direction.

I thought as my kids moved from babies to toddlers to young children and now into teens, that my job would get easier. And in some ways it has. But as their lives have grown more complex, their friends, involvements, appointments and requests, have in some way made things harder – harder to keep the plates spinning at the same time.

My daughter recently got her driver’s license, and we got our hands on a ’97 Chevy for her to get herself where she needs to go. It has helped tremendously. My son, who is on the spectrum, did not cope well hearing two or three times a day, “Oh, by the way, I need to do ____________ before I do __________,” coming from my daughter, thereby throwing whatever plans he had into flux. As far as he’s come in being patient and flexible, her typical nearly-seventeen-year-old ways were too much for him, making them too much for me.

But here’s the thing, next year she’ll be a senior, in less than a year and a half she’ll be off to college – I won’t be spinning plates anymore, at least not on a daily basis. He will not need to be patient and flexible with a sibling at all. And that’s not really the answer, either, for it’s part of her job – perhaps the biggest part – to challenge him, to make him rise to the occasion, to know him on a level only a sibling can know another human being, no matter how separate they’ve been.

Sunday, April 17, 2011

Hopeful Parents wants our readers' comments!

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Suddenly I See

“So…how do you turn the autism radar off?”

This was a question I asked some of my autism mom friends after coming home from a friend’s child’s birthday party.  As I watched my kids play at the party, I couldn’t keep my eyes off of two of the other little boys there.  One was spinning in circles next to his mom and baby brother, making loud noises as he crashed into the present table.  Another was off in a corner away from all the noise, terribly afraid of the kids playing around him.

Even the autism mom in me might have been able to pass this off as “typical” four year old behavior.  Except their parents had the look too.  The look of exhaustion.  Of embarrassment.  That look of “I have no idea what to do with my child”.

I sat at that party cursing my autism radar.  I just wanted to be my kids’ mom there.  Instead, I was analyzing and overanalyzing every other child in that place, just like I do at the playground, the baseball field and the supermarket.  I’m so familiar with the signs now that I can see things that others cannot.

So I asked my smart and experienced friends that question.  “How do you turn the autism radar off…is it everywhere or is it me?  I just wanted to enjoy the party.  But all I could see was what the other parents weren’t seeing.” 

And the answer was: you can’t turn it off. 

Part of the reason, they reminded me, is that it is everywhere.  The official numbers might be 1 in 110 children, but the reality is that it’s probably much higher than that.  And considering the age group and the activity at the party, that’s the time when many of the red flag behaviors come out. 

They also reminded me that autism is part of me now.  My perception of the world has changed.  Hell, my whole world has changed.  No matter how hard I try not to let it happen, autism seeps into everything these days.  So how could I not see it when it’s so prevalent in my everyday life?

And then, another friend chimed in.  A brilliant mom who has been there, done that with her amazing daughter.

Look, you're never going to be able to turn it off.  You *will* however, be able to, from time to time, feel like you belong to an underground family of really, really great people. You may already feel like this. We see things that others don't, and we can either let it bog us down, or look at it like this: we see beauty in things others can’t.  Things like acquiring language. Potty training... Our kids doing things we NEVER thought they'd do. So try framing it like this: you have powers that can help.

Just like that, my curse became a blessing.  I now had a superpower.  I can see what others can’t.  And that’s a good thing.

Instead of being the mom that pulls her kids away from the chaos, I can be the mom at the birthday party who steps in to help when I see a child spiraling out of control.  Instead of being the parent that rolls her eyes at the difficult kid at the playground, I can be the person who sits next to the tired looking dad and share a joke or two.

I can be the one to start the conversation when others back away. 

So watch out, America.  Because this autism mom has her radar up.  And I’m here to help.

"Suddenly I see (Suddenly I see)
This is what I wanna be
Suddenly I see (Suddenly I see)
Why the hell it means so much to me
" - Suddenly I See by KT Tunstall

anxiety takes a vacation

Ed note: Quick context - I am on vacation with my two daughters - ten-year-old, Katie, who (while anything but typical) is what we call 'Neurotypical' and her eight-year-old sister Brooke who has autism with an extra shot of pervasive anxiety. Their dad will be joining us later in the week, but for now Mama's flying solo.


The day had gone South just after noon. It would probably be fair to say that it was all my fault as I'd stupidly tempted fate with an overconfident status update to Diary's Facebook page,

"I'd almost forgotten what plain, unqualified HAPPY feels like."

  Jackass. I know better than to taunt the autism gods - fickle suckers that they are.

Within five minutes, the wheels had gone flying off the wagon. The rest of the day became a game of Survivor.


We are by the side of the pool. My girl has come undone. She is sobbing. And screaming. There's nowhere to turn, nothing I can do when the demons get too big.

Yesterday, she loved this place. Today it's hell. We are packing up to leave. We'll try a smaller, quieter pool. I have yet to see that setting won't matter today.

She begins to scream. "I'm scared! I'm scared! I'm scared!" again and again and again. I want to scoop her up in my arms, to hold her, to tell her I'm here, that it's OK. I want her to know that she's safe, that nothing can hurt her. But autism doesn't work that way. Not for my girl.

"Mama, I'm scared!" she yells again.

We are moving now. We pass the guard at the gate. It's the one who is always so nice to us. Who never asks to see our pass because he says I have an honest face. I try to contort my honest face into a smile as we walk by him. It doesn't work.

Outside the gates, I crouch down to my girl. "What is it that's making you feel scared, baby?" I ask. "What are you afraid of?"

She sees me. That's big. She processes the question. I wait.

Tears stream down her face. Her limbs are wracked with tension, every muscle flexed and ready for flight or flight. Her fingers are splayed. Her mouth is open.

She yells through the tears.

"There's a fire in Mr. Hooper's store! We can't go back in there."

Elmo Visits the God damned Firehouse. It might be funny if it, well, wasn't.


Katie can't do it anymore. She's been superhuman since the moment we left the house for the airport. But this too much. Everything she's held in comes out. She's angry. She's tired. She's sad. She's done.

The feelings spill over, words tumbling over one another. "I just wish that once in a while SHE knew what this feels like for ME. I just wish that you could leave her be and just worry about ME. I just wish it wasn't like this. I just feel like I want to cry but I know it's not OK."

As Brooke paces nearby, I hold Katie tight to my side. I tap her on the shoulder. She looks up and I point to my eyes, full with tears. "It's OK, baby. I understand. Let it go." She nods silently, buries her head and lets the tears flow.


A family passes by. I wonder briefly what this scene looks like from the outside. I can only imagine. I wonder what they would do if I turned around and, in my best game show host voice said, "Hey, have you heard? April is Autism Awareness Month. Congratulations, folks! You've just been made aware!"


Today we start again. A new day. A fresh slate. A chance to try again. Wish us luck. And if you happen to have a line to the autism gods, please tell them I'm sorry and I promise not to mess with them again. If we can manage happy today, I'm gonna keep it to myself.


Jess can be found at Diary of a Mom where she writes about life with her husband Luau* and their beautiful daughters - ten- year-old Katie*, an utterly fabulous typically a-typical fourth grader, and eight- 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.

Saturday, April 16, 2011

Bucket-Fillers Need Not Apply

~Required qualifications: puzzler and pogo stick operator~

Preparation for school came in phases. After the early haze of health issues, diagnosis and treatment plans began to clear; the hunter/gatherer mentality took over.  I busied myself making connections with other parents, with those active in the school district, with educators.   Like we all do, I added countless resource and reference sites to my browser bookmark list: special education law sites, my LEA’s site, articles on writing strong IEPs, websites for upcoming conferences and more.  I attended every training on communication and special education that fit on my calendar.  I accepted leadership roles in the school district that would give me more exposure to both regular ed and special ed. I asked questions of parents a step or two ahead of us, as well as those 10 steps ahead of us, already preparing for transition. 

I did all of those things that most of us do and I believe they have at least partially contributed to the school experience Addie is having now. A successful junior kindergarten year led to an even better kindergarten year, which brought us to this current first grade experience.  She is engaged, happy and challenged.  She is a contributing member in her classroom, respected and heard by others in the school community: peers, teachers, aides, clinicians, administrators.  Her participation is required and valued - in addition to using her communication device, Addie uses a few approximations, many signs, gestures and expressions to get her point across.  In my overt and covert observations, any and all of these methods are accepted and responded to by adults and children.  Faith in her abilities evokes in her a mad desire to always employ them. 

Back in K4, this was new for her.  In some school situations prior to elementary, it had been an uphill battle to get her to swing with the school agenda.  Often she would stay in her own sensory world, rocking, shaking her head, exploring textures, keeping her eyes on the carpet or ceiling.  It didn’t take too much observation to determine when any given classroom situation was not the right one for her.  But why wasn’t it?

It took some retrospection, looking back at the plan in place at the time, making sure goals were appropriate, considering whether I had shared with the staff the right tools to encourage Addie, to meet her where she was.  I had been hearing all the right things when we met with the team to plan or re-plan.  I spent many hours hunting for the missing piece in these situations before it dawned on me that 2 chunks were missing.

The staff (and her peers, as a result) didn’t believe in Addie. 

I never asked them to.

Nothing was required of Addie during the short time she was in that early classroom; they had no standards or expectations of her. She was physically just present until it was time for her to go work individually with a clinician on an individual goal.  We didn’t listen close enough to the staff when carving out a plan for Addie.  I didn’t get a feel for whether everyone in the room thought Addie was truly capable of realizing each goal, much less whether there would be an expectation that she would contribute to the community as a whole.

Since that dawning, we have learned how to listen for more than just the right IEP buzz words.  I listen for puzzle vs. bucket attitudes regarding Addie’s education:

A puzzle professional’s perspective - all the pieces are there, we’re going to work together to sort them out. It’s just a matter of time and method. What I need to do first is get to really know Addie, see the big picture, you (parents) and I will collaborate along the way to get the corners and edges in place and Addie will fill most in on her own.

A bucket professional’s perspective – you kid is like an empty bucket and my job is to fill it.  Some buckets are yellow and some green, but I’ve worked with buckets before, don’t worry. I’ve seen it all. These are the things I have to fill the bucket with, whether the volume, method of pouring or viscosity is appropriate or not – the bucket will just have to deal.  If there are spills or overflows, it is because there is something wrong with the bucket, not with what I have to fill it with.  It’s best if you parents just let me work rather than getting involved, but you are free to read my quarterly progress reports.

What I learned to listen for is whether the professional sees my child as something whole, with everything she needs inherent in her or whether she is seen as something with gaping crevasses that require the specific spackle they happen to have.  Does the professional already know everything that needs to be known or will they take what they learn from my kid and use it to help her be her best?

Does the professional see their role in Addie’s progress like I see mine – as an escort to her potential, as someone who shows the way, sometimes leading, sometimes invisibly supporting from behind?

Addie has remarkable judgment when it comes to knowing whether someone has expectations of her or not.  If they don’t, she will not engage with them, will not follow their agenda, will not comply for compliance’s sake. We know now that we need to get to the bucket people before Addie does.  She does not easily retract a first impression – particularly a negative one.

Within the team we’ve worked with the last few years, there are mostly puzzle people. We are lucky now, but there have been a few bucket people that have passed through.  My work was then to ask them for a leap of faith. 

I had conversations with these few bucket professionals that consisted mostly of me sharing anecdotes of accomplishments Addie had reached of her own volition – victories that no one anticipated: how she taught herself to swim, how she got her point across through creative navigation of her device to borrow something from another context, different ways she surprises even us – little proofs that no assessment of current or ‘moment in time’ skills should be taken as declaration of limitation.

When possible, I set up situations for bucket professionals to witness these victories firsthand and hopefully draw the same conclusions over time.

We add our own “present level” to her IEP that is not just a list of strengths, challenges and motivators, but stories and examples of how she herself uses her strengths to circumnavigate her challenges, how balancing our expectations between a few steps beyond her ‘measured’ capabilities and the things she’s motivated by have led to specific and surprising gains.  We include how Addie feels about these gains and how we know she feels that way.

I have only one suspected bucket professional left in Addie’s circle, but from this person’s written comments and our few conversations, I think influence of the puzzle people is starting to take hold.  She is starting to see that if she expects that Addie will do well, she will.

For parents of any child, leaps of faith are a daily, hourly thing.  We hop all day long and long jump through the years.  Our parental pogo sticks are never in park.  I now understand that one of the most important things I can do for my powerful little citizen is to ensure she is surrounded by as many fellow leapers as possible.  If some aren’t jumping when I meet them, my job becomes one of convincing them to consider the dividends of a few great leaps of faith.

Friday, April 15, 2011

Battling Uncertainty and the Long Road to Actual Help

I believe that one of the hardest things about parenting a child with autism is the uncertainty. What treatment options are best for my child? Will he grow up to be independent? Happy? At what point do I need to bring in an attorney or advocate to help my child get what he needs from the school system? Should I consider medication?

You can probably add your own long list of uncertainties here.

I am always running into people who really seem to have it all together. They have a doctor who acts as a case manager and their speech therapist regularly confers with their occupational therapist. They have a behavioral aide who comes to their home and loves them so damn much that they go to IEP meetings for free.

I, of course, am intensely jealous of these people. I also have a sneaking suspicion that they don't actually exist.

I don't know that anyone has all of those things, but some lucky people have parts of it. I feel like I have been battling this uncertainty for so long all on my own that when I went to an appointment with a developmental pediatrician recently and felt that she wanted to look at all aspects of my son's treatment and care and help me, I was almost ridiculously grateful.

See, my son Jack didn't qualify for services in my county's early intervention program when I had him evaluated at age two. The woman in charge of the evaluation looked at my son, a second child and a boy, and she looked at me, a parent whose older child had been speech delayed, and I think she saw an overreacting parent. Her evaluation of Jack was much less thorough than that of my oldest son and resulted in them saying that his scores were low, but not low enough for him to need services.

They told me that this was a good thing. I was afraid for my son, so I grabbed on to the hope that he wasn't really delayed and ran with it. When you live with an undiagnosed child with autism, however, you can't hold on to that hope for too long before reality sets in.

I knew that something was going on with Jack, but it was really difficult to get anyone to listen. Everyone kept telling me that boys talk later than girls and that sometimes second kids don't talk because their older siblings do it for them. They suggested that Jack didn't feel the need to talk because I anticipated his needs. I had a preschool teacher tell someone from the county's older child early intervention evaluators that she had no idea where I'd come up with the idea that Jack had autism and that the idea was ridiculous.

We hired a private company to observe Jack in school and they gave us a report that indicated that something was really wrong, but they did not follow up. This is when we turned again to the early intervention evaluations again. They dismissed so much of what was quirky about Jack as him having an off day when he was being evaluated. I insisted that a psychologist observe Jack at preschool. They told us that without her report, Jack would not have qualified for services.

After that, Jack started attending a special education preschool, but never qualified for speech or OT services. Not one of his teachers pulled me aside to suggest that I take him to private therapy or a social skills group. No one ever spoke to us about ABA therapy, which so many parents with autistic children swear by. When I asked Jack's teachers, they looked at him and said, "He doesn't present as a child with autism."

The developmental pediatrician I worked with didn't have much good advice and I eventually just stopped making appointments with her. A half hour in her office twice a year didn't seem to be of much use anyway when no one in Jack's life communicated with each other. Because I was so uncertain and seemed so all alone in my belief that Jack was autistic, I hadn't empowered myself to start making demands of this nature. Frankly, I didn't even know that I could.

I put Jack on a wait list to get him evaluated by a nearby autism center. Months later we were still on the list. Finally, during a screening for a National Institutes of Mental Health study, we found a doctor who really paid attention to Jack and gave him a diagnosis. We were thrilled, but still, follow-up treatment and advice was not in this doctor's job description. Jack was almost five and was heading into an IEP situation where his preschool team originally thought he needed extremely minimal services.

Three years have passed since then and we have managed to put together a plan for Jack. We've used speech therapists, occupational therapists, social skills groups, social thinking consultations, a case-manager at his school, paraeducators, an educational consultant and an attorney. Was this the right group of professionals to use for Jack? I don't know. I mean, obviously I think so, but I'm not an expert.

If someone just said to me, "Do these six things and Jack will have the best possible outcome," I would move heaven, earth, and probably an ocean or two to make it happen. Obviously no one can say that, but it has been so tiring to not have someone to help me coordinate all of this. I wish somebody would have looked at Jack and been able to make knowledgeable suggestions about what would benefit Jack the most.

Based on my own research and concerns, I decided to have Jack reevaluated this past year because it had been so long. We went back to the autism center on whose wait list we had so fruitlessly waited. This time we waited A YEAR for the evaluation. They spent half a day with him, sent us a report and didn't follow up. More uncertainty.

Honestly, I was about ready to give up. After five years of piecing things together by myself and trying to make it work, I was tired of looking for someone to help me. But there was one thing I needed to speak to a doctor at the autism center about. So I called and made an appointment with a developmental pediatrician there.

You guys, I think I found her.

She listened. She gave advice. She validated what we are doing with Jack. She asked my opinion. She rolled her eyes that the people who evaluated Jack hadn't followed up with us and then she answered all of my questions about the report. She gave me concrete steps for how we're going to move forward and she told me that she's looking for information that we can share with Jack's teachers to make things better for him.

She even told me that she would take special care to realize that I live an hour away and will be willing to work with me over email. When the general receptionist couldn't fit me into her schedule for our next appointment and told me to call the doctor's receptionist, that receptionist called me the same day to make the appointment.

There are still so many "ifs" crawling around in my head, but I finally feel that there is a professional guiding me. I'm still the lady in charge, and I want it that way, but it feels good to have someone holding my hand.

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.

Thursday, April 14, 2011

One Ranunculus

Last year, I planted flower bulbs. In the front yard, I planted big purple Allium. In scattered pots, I planted daffodils and paper whites. And in the backyard, I planted a pot of my new favorites, ranunculus, with their fine layers of petals and pure, bright colors.

I'm not really the gardening type, but I'm learning. Bulbs are fun, because you plant them one season, and they pop up another, a springtime surprise. Here in California, beautiful blooms are everywhere. A nearby outdoor shopping center, the kind with upscale stores that bring in enough money to afford expensive landscaping, has the most gorgeous tulips. They are the kind that are one color, but have edges dripping with another, like they were dipped in paint.

It was at this mall that I first noticed ranunculus, and I've been waiting patiently for mine to come up. About a month ago, the green shoots starting rising out of the dirt, but they quickly bent and faded, without producing a single bloom. I pulled the yellowed stems, and put the neglected pots out in the rain for a good soak.

And now, as the rain fades and the sun returns, so have new, healthier stems. Just this week, a single beautiful yellow flower rose up straight and tall. It looks lonely in the pot, but I hope more will join it soon.

I should say, it "looked" lonely in the pot. Because a couple days ago, my son, who spends much of his outside time pacing the yard’s perimeter, walked past that bloom, grabbed it, and plucked it right off. He did not do it with malice, nor was he trying to get a better look at it. He just grabbed it, and a couple feet past the pot, dropped it on the ground and moved on to the next tactile sensation.

As I watched him pluck that bloom, unable to stop him in time, I felt tears rising. Lately, nothing in our house is safe. In one day last week, Moe broke a wheel off a toy car, a rubber peacock off a music toy and pages out of a book. Why should anything in our backyard be safe?

I felt a failure at yet another desperate attempt to control some aspect of our lives. I hoped that with just the right amount of water and sunlight, vitamins and attention, I could affect an outcome: seasonal color, beauty, speech, normalcy.

That is when I had to laugh, not at Moe, but at myself. There I was, the constant blogger, immediately trying to find an analogy in the scene. And there I also was, the constant warrior-mom, trying to blame autism for every one of my son’s behaviors. That flower could have met its doom in so many ways, including the dog, the wind, or at the hands of any typical child. For me, part of finding acceptance (something I struggle with) is fighting the urge to ascribe meaning to every action my son takes.

Sometimes, as they say, a cigar is just a cigar, and sometimes, a ranunculus is just a ranunculus.

Wednesday, April 13, 2011

Helicopter Grounded

I guess it's one of the most important jobs parents have, to make ourselves obsolete. For parents of kids with disabilities, that's a complicated project. We get used to our children needing us to a more intense degree than most, and resign ourselves to being overinvolved. Still, there are moments when we may be surprised by the fact that a need that used to be overwhelming has quietly diminished. I had one of those revelations a couple of weeks ago at, of all things, a funeral parlor.

The mother of my son's one-on-one paraprofessional had passed away, and I brought my boy to pay his respects. I was in full-on damage-control mode, ready to pull him out if he got rambunctions, shush him if he got loud, amuse him if he got bored. This is what I do; I'm a seasoned boy-wrangler. I remembered the wakes for his grandparents, at which I found an unused room and set it up with his cars as a way to keep him out of mourners' hair. I remembered other wakes where a couch outside the main room would be his haunt. Easier to keep him contained than risk offending people; "change the environment" is a motto that works in all sorts of public settings. In this case, I figured we'd just go in, talk to his aide for a few minutes, and make a quick exit.

But that's not the way it played at all. He chatted with his aide, who was very happy to see him. She introduced him to family members, and he shook hands and exchanged greetings. After that, he found other people he knew, teachers and paraprofessionals, some he sees every day in high school and some he hadn't seen for years, and chatted pleasantly with them, voice well-modulated to the occasion. No need for damage control, no one shooting looks that said Where Is This Boy's Mother and Why Can't She Control Him? Just a handsome, well-liked young man working the room. I was left standing off to the side holding jackets, utterly superfluous. It was wonderful.

Perhaps I should have seen if there was an empty room off to the side somewhere for me, a couch in the hall for the chauffeur to wait until it's time to see the young man home.


Terri Mauro blogs at Parenting Special Needs and Parenting Isn't Pretty. She has two terrific kids, a 20-year-old with learning and language disabilities and an 18-year-old with FASD, both adopted from Russia in 1994.

Tuesday, April 12, 2011

My own obsession

I think we’ve all heard how important it is to our well being to find an activity in our lives that we do for ourselves, something that we enjoy either independently or with friends, just as long as it takes us out of the role of caregiver to a special needs child once in awhile. That makes a lot of sense intellectually, but practically speaking it’s pretty difficult to put into practice. (Insert sarcastic comment and laughter here.)

I’ve been searching my mind and community for ideas of ways to find personal enjoyment and fulfillment, if even for just a short time each week or month and have come up dry. When you factor in the cost of joining classes or gyms with the cost of hiring a sitter to watch your child, not to mention the cost for the supplies or gear involved; it’s adds up really fast.  I think it’s hard for any family to rationalize extra costs for activities in times like these, but especially families like ours, and maybe yours. We face a continuous stream of mounting medical bills and insurance woes. We work ourselves into the ground just to stay afloat amidst all the bills. So if we’re looking for ways to make ourselves feel good, whole, nourished, fulfilled, well then they better be cheap.

I found my way a couple of weeks ago and have been obsessed ever since. Too bad it isn’t cheap, demands a huge time commitment, and could result in serious injury or I’d be doing it. I’m talking about the roller derby.

I grew up skating, my parents skated, my grandparents even met at the roller rink. I miss it and loved the sense of freedom and fun that it brought to my life as a kid.

And the aggression! I have never felt so aggressive in my life and have no way currently to deal with it. I’m not saying that I want to hit random strangers, but if I could actually score points and have fun on skates while simultaneously kicking some butt, that sounds like a slice of Heaven to me!

I’ve listed the pros and cons and gone over them in my mind for weeks. There is no way that I could participate in something like that and remain a responsible parent to a child who needs me the way mine does. It’s just not in the cards.

But I’m on my way to becoming the biggest groupie our home team has ever seen. 

I'm a Borrower

There are many days when I have it together - strong, empowered, feeling full of sunshine and happiness.  You know the days - what we would consider the "highs" in reference to the highs and lows of life.  I bet I'm not alone in saying that I love those days!  I love to celebrate them and find little moments to do a happy dance because I know they do not last forever.

I am truly grateful that I spend most of my time on the positive side of the highs and lows, but it is inevitable that there will be some low periods.  And that is when I go into my borrow mode where I seek out people who are in the high and use their optimism and experiences to get through the lows as quickly as possible.

Wondering why our house is staying on the market for what seems like forever?  Why my non-verbal child isn't as excited to use an augmentative communication system as I am for her to use it?  Why my child will happily walk in her gait trainer all around our house but not even so much as move a foot forward when I bring it to school or private therapy for her (this takes a bit of effort on my part!) to use?  Why there is always a unexpected expense just when you found a little bit of money to get ahead?  Dreaming of how easy it would be if we didn't have to jump through ever higher hoops to get services, equipment, etc. covered because we won the lottery and could pay out of pocket?  Questioning what the future looks like for our children with all the budgetary cuts getting tossed around by our legislators?  

Thinking about all this is enough to put me in a grumpy mood so it's good that - this Hopeful Parents post aside! - I don't usually dwell on these at the same time.  But when I do start moving to a grumpy, less positive outlook on life I seek out and borrow faith, hope, joy, and resilience from others.  I talk to people who are positive, read blogs about children achieving, revisit Hopeful Parents posts that left me warm and fuzzy.  

Doing these things usually works to help me fake it until I feel it.  And then something magical happens.  I start to swing back to a positive frame of mind and don't have to fake it anymore.  Yes, I am a borrower.  And my outlook on life is all the better for it.  


Kristina contributes to several blogs and hopes that she can sometimes be a lender to those who need some help to fake it until they feel it.

Monday, April 11, 2011

Cut-and-paste activism

I know you're busy.

God KNOWS I know you're busy.  (What?  What do you mean it's the eleventh already? I have a post due today?)

I know it's IEP season and that you're trying to make extended school year plans and that ever since we "sprang forward" in the name of daylight saving, your child has not slept through the night.  I know.

I know you don't have time to eat breakfast in the morning, never mind read the newspaper.  I know you feel like you have a vague sense of what's going on in the world (Earthquake? There was an earthquake?), but you simply can't follow the ins and outs of the lobbying and voting in your state and local government.  I know.

But listen:  there are political forces at work right now.  Powerful forces.  And they pose a threat to the supports and services that our kids desperately need.  My state is facing devastating budget cuts.  And my state is not alone.

Our legislators need to hear from us.  They need to be reminded that our kids matter.  They need to hear from us en masse.  They need to know how many of us are out here.

And I know:  you don't have time to research the pending legislation in your state.  You don't have time to write a letter.  You. Don't. Have. Time.  I know.

So I'll make it easy.  Really - five steps, five minutes.

1. First, click here.  Then click on your state.  It will take you to your state government's home page.

2.  Right there on that home page, you will find a link that says something like "Find my legislators" or "Who are my representatives?"  Click it and enter your zip code.  You will get the names and e-mail addresses of your state representatives and senators.

3.  Highlight and copy the text of the e-mail below.

Dear Representative (or Senator) Their Name Here,

As a voter and a parent of a child with special needs, I am writing to urge you to vote against any budget cuts that would diminish support to children and adults with developmental disabilities.  We have a moral obligation to care for our most vulnerable citizens, and cuts to current services would be devastating for this population.  I look forward to hearing that you have taken a stand on the behalf of individuals with disabilities and their families.

Most sincerely,

Your Name Here
Your Address Here

4.  Paste the text into the body of an e-mail and send it to your first representative.

5.  Repeat step four for all additional representatives and senators.

Truly.  It matters.

Five steps.  Five minutes.

A lifetime of difference for your child and mine.


Though MOM-NOS does most of her writing on her blog, Mom - Not Otherwise Specified, she does take the time to send an occassional e-mail to her state reps.  She was delighted to learn that when recent budget cuts came to a vote in her state legislature, neither of the reps from her district supported them, and it reinforced her belief that activism - even activism on a very small scale - matters.

Making Lemonade out of Lemons

Last night at the dinner table, Sylvie’s twin sister was making up her own sign language. I=pointing to her eyes.  Love=pointing to her heart.  You=pointing to the various family member to whom she wanted to direct her affection.  We did a full round robin of this game. When we came to Sylvie, her sister moved Sylvie’s hands up to her eyes, her heart and then out to her papa, then her mama, and then her sister.  Sylvie smiled a big smile. That girl knows who she loves.   These interactions between my verbal and non-verbal daughters allow me to focus on that which isn’t so bitter.  In other words, my family and I are trying to make lemonade out of lemons.

Lemons are tart. They are refreshing. They get green, soft and moldy if left in the refrigerator for too long.  They are good in savory or sweet dishes. But they work best for me in lemonade (or a stiff gin and tonic!).  Some days I focus on the nasty acidic taste that I have in my mouth from being handed a really bad medical situation.  But sometimes, I’m able to sweeten the deal, just a little bit. 


For instance, we invite medical students to come talk with our family about once a semester to discuss the challenges and hopes we have with a terminally-ill child. Serving as family faculty feels like one small thing we can do so that others may benefit from our experiences. Another example of taking our situation with Sylvie and trying to find some silver lining is when I stumbled upon the Hopeful Parents website.   My humble monthly postings are an opportunity for me to reflect on my daily life as a mom with a kiddo who is immobile and nonverbal. It’s also a chance to read other parents’ divergent stories about living with children who have disabilities.   This website is a gift to many of us, for which I am grateful. In order to make more lemonade, Hopeful Parents would like to get your feedback as its online readers.  

Please, take a moment and tell us at Hopeful Parents what you like about this website and why you read the posts.  Let us know what we’re doing right and what you would like to be improved.  Thanks!  Fill out this survey at


Kirsten Isgro is a professor of Communication Studies at the State University of New York and the mother of 5-year old twin girls.  This survey is part of a research methods course she is teaching this semester, with the goal of investigating the importance of online support networks.


Sunday, April 10, 2011

Not His Brother's Keeper

The other night Ethan and I were talking he was getting ready for bed. He told me he really wishes we'd had another child, that he also had another "regular" brother or sister besides his autistic twin, Jacob.

As Ethan gets older I try to give him more and more straightforward answers, figuring he's old enough to handle reality and truth of his life, albeit the somewhat "light" and what I think is vaguely age-appropriate version.

So I explained to him that there were two reasons why we hadn't had another child. First off, I was pretty old to be a mom when I had him, and we were unlikely to have been successful in having another. 

And then there was the autism factor, that since we'd already had one kid with it, the chances were much higher that we could have another. And that just wasn't a risk we were willing to take. If he thought one brother like Jake was tough, how would he like two?

He still wasn't convinced. Besides being able to play with them, he told me, he thought it would have been helpful to have someone else help him to look after Jake when they're older and their Dad and I are gone.

Talk about moments that stop time.

I told him that we didn't know for sure that Jacob would need looking after, that he might grow and change in ways that astonish us. And also that if he did end up needing some help, we would make sure to set things up in a way that he would not feel unduly burdened by his brother. Whew.

What surprised me the most about that extraordinary conversation was that Ethan was being so calm and rational about it. Because for some time now, most talk of his brother has usually been of the yelling and screaming variety. I am used to hearing this:

“I hate Jacob! I don’t want him to be my brother. Why did I have to have a twin brother with autism? Make him shut up! He is the meanest, most annoying brother in the world! I wish he were never born! I want you to give him away to someone else! I want you to send Jacob away. Forever!”

To say things are difficult between them right now? An understatement on the order of calling the Pacific Ocean a small pond.

When they were younger the dynamic was different, three year-old Ethan longed for his brother to play with him, talk to him, acknowledge him. But Jake was mostly just in his own world, much more likely to relate to adults rather than children, if he was going to relate to anyone at all.

When The boys were four and going to two different pre-schools a few blocks away from each other I had this conversation with Ethan after dropping Jacob off at his school:

Ethan: “Mom, I wish that Jake and I both had Autism or we both didn’t have Autism.” Tears jumped out of my eyes.

Me: “Why honey?”

Ethan: “So we could be the same and go to the same school.” 

I was so full of love and sadness at that moment. And Ethan so full of longing for connection. But fast forward a few years and the toll of constant rejection and disappointment has worn away all the compassion, turned everything bitter and Ethan full of anger and resentment.

And this is how we live now: Jacob wants to play with Ethan all the time, while Ethan wants nothing to do with his brother and, except for rare, magic moments, will not give him the time of day. Jacob hates being ignored, and like most kids has decided that negative attention beats no attention at all, so spend his days annoying the living crap out of his brother.

I have a category tag on my blog: “Ethan and Jake do NOT get along” and it brings up a lot of posts.

Some quotes from them:
“Life with Ethan and Jacob is not easy these days.  They have no relationship with each other, we do not function as a cohesive family unit much.  A moment here, a moment there, is all.  Otherwise everyone is in their own individual bubble with me running back and forth between everyone like a crazy person trying to mold some cohesion where none naturally flows.  And then the fighting, the constant fighting.”

“Five minutes with the kids exhausts me. And don’t you know it’s school vacation week! And I would be looking forward to spending time with the kids, if we all could do the same fun things, if my kids actually enjoyed being with each other.

Actually that’s not the problem. Jacob loves being with Ethan, wants to play together all the time.  Ethan would prefer for his twin brother to be swallowed by a black hole never to reappear again. And I have a week of this to look forward to: Jacob pleading and pining and Ethan yelling and rejecting, unless I separate them, but there are two of them and only one me.”

“This morning hearing Ethan so happy playing with his friend brings it all back, the dashed expectations: My sons will not be lonely they will have each other. Instead, today Ethan is happy and Jacob is lonely.  Most days they are both lonely, Ethan bothered, angry and Jacob hurt, rejected. And I can’t fix it, I just don’t know how, I feel like a failure as a mother. “

Clearly this is a major issue in my house. My kids fractious relationship probably causes me more agita than any other one single thing in our lives.

I also know that I am not alone in this, that it’s an issue for nearly every family in our situation. I wanted to find out more about what others are experiencing, and how they are -- or are not -- handling things, so I went hunting on the internet, trawling through other people's blogs, but it was really time consuming.

So I decided I wanted to start a focused dialogue about this, and what better way to do that than to create a space for it on my own blog.  I invited some special needs parenting bloggers who have more than one child to write about their experiences in a series of guest posts. Thus "Special Needs Sibling Saturdays” was born.

In my introductory post to the series, I wrote:

“Special Needs kids and sibling issues? An explosive combination. Nothing makes me cry more. Not the death of my father. Not autism in and of itself. But this: the extremely difficult relationship between my twin sons, one on the Autism Spectrum, one not.

I don't have a handle on it. I have NOT figured out how to make it work in our house. There is yelling, there are tears. There are often two unhappy, lonely, angry boys and a mother who is at the end of her rope in our house. I am not proud of this. I am saddened, deeply troubled.

That my children mostly do not get along, that it is so hard for us to function as a cohesive family unit?  Is probably the single most consistent source of pain in my life.

So that's what I'm hosting a guest series about. Not what I do best, but what I do worst. Because that's what I need to hear other voices about.”

The series launched with this lovely post: “My Brother, My Brother” by Alysia of Try Defying Gravity who also writes here at Hopeful Parents (as do quite a number of my guest bloggers) and has now been running for three Saturdays. 

Reading all the posts that have been published so far (and the ones that are pouring in, soon to come) has been a wonderful and very helpful experience for me. And from the feedback I’m getting, these posts seem to be resonating for folks out there too. I am very glad to be able to do my small part in creating dialogue and community.

So please come by on Saturdays to visit and read. And know that whatever is going on in your house -- whether your kids are each others best friends and helpers/teachers or whether they get along like snakes and mongooses -- you are not alone.

Varda writes about "birth, death and all the messy stuff in the middle" on her blog "The Squashed Bologna: a slice of life in the sandwich generation"  She also tweets as @Squashedmom. Varda is proud to be a Hopeful Parent.