Sunday, July 31, 2011

Hope for the Human Ability to Embrace Diversity

For many years, my extended family has spent a week in the mountains at a camp on Fallen Leaf Lake in Tahoe, CA.  The cabins are modest with comfortable beds, a bathroom and deck.   It’s all we need.  Each meal is prepared for the guests and served in a community dining room where the staff made up of college students serve and clean up.  No cooking or cleaning up after meals for an entire week! 

The children attend group activities with other children during the day with counselors that are college students so parents get lots of adult time.  Then families reconnect in the afternoon and gather around the dining table.  Days get filled with activities like hiking, swimming, tennis, kayaking, rowing, volleyball and great conversation with other camp guests.  It’s a true vacation and I’m deeply grateful that my parents make it possible for us to go! 

We haven’t taken our older son, who has autism and is non-verbal, since he was 18 months old as it felt too complicated and overwhelming.  I didn’t see how it was possible.

But this year, my husband and I decided that 2012 would be the year we would bring Ian.  When we arrived last week, we began asking the staff about the possibility and we were so delightfully surprised by the welcoming attitudes from every single person we spoke to.

I had the opportunity to speak in front of half of the guests and share how Ian has taught me to listen beyond words.  Several guests approached me throughout the week with encouragement and expressed their desire to meet him next year.   My husband and I felt the love from the entire camp family.  And as we said our goodbyes on Saturday morning, many guests reiterated their encouragement and support. 

This experience strengthened my hope in the human ability to embrace and welcome diversity.   Every day reveals more evidence of how this is so.

When we told Ian he’ll be joining us, his brother, his grandparents, cousins and aunts and uncles on our special annual trip, he squealed with delight.  Next month Ian will join his father, brother and me for a week in Del Mar, California.  We’re taking small steps to build my confidence.  With each experience I let more and more fear go.  What replaces it?  Peace and it feels divine. 

Is there a fear in your life that’s holding you back?  How do you feel about the possibility of letting that fear go?  Or have you experienced letting go of a fear that opened up beautiful opportunities for you and your child?  I’d love to hear about your experiences.


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

Friday, July 29, 2011

The Night Mommy "Didn't" Get Drunk

A couple of years back, our family was fortunate enough to go on an Alaskan cruise. We'd never dared travel before. Our daughter was too unpredictable. Things which were supposed to be fun never turned out that way. What was the point? Travel seemed to be something we would lose to Asperger's. But at a certain point, I decided I was going to stop blaming my kid for not doing things I wanted to do. With a lot of preplanning, we went, and it turned out to be an amazing experience. 

At dinner one evening, the waiter poured me a second glass of wine. I enjoy one glass but rarely have two, and just as the pouring was complete someone else was snapping our picture. 

"Great!" I said. "We'll call this photo….the night Mommy got drunk." 

As the picture was taken, all lightness and frivolity, I looked down to find Riley trembling. 

I took her face in my hands and asked her what was the matter? We'd been having so much fun. 

She'd heard of drunk. "It's when people get all strange, and their legs get wobbly and they talk funny." She had no understanding of "drunk" as a temporary condition. In her mind, it was only a matter of minutes before her mother became permanently drunk. My sweet black and white thinker was terrified.  

It is unsettling to see a parent under the influence. Ask me how I know.

My heart goes out to all children of addicts, especially those with minds like my Riley's. I can't even imagine how much more stressful it must be for them. 


*Michelle O'Neil is author of Daughter of the Drunk at the Bar

Thursday, July 28, 2011

Not Knowing

I am not the first to travel

these paths of parenthood.

Not the first to miss

unmarked signs that lead me

to unpaved roads

into the dark woods of my life,

where I bump along, eyes wide,

senses heightened,

as I surrender to not knowing

where this road shall end.

It is here, that I trust,

all who have come before me.


I look into the eyes

of all the grown men around me.

I watch the future faces of my son.

In a flash, their lives speed by me.

They have traveled through

infancy, toddlerhood, illnesses,

families of all shapes and sizes,

shadowed woods, and joyful fields,

as they navigated their journey to adulthood.


I stand in amazement.

And with a knowing eye,

these men turn me around,

rewrap the blindfold over my eyes,

and send me back

to the roads of parenthood,

not knowing.

Portrait of a Father

*All photographs and video in this post created by Maisie Crow

This month we learned the disappointing news of an individual who posed fraudulently on an Internet blog as a father of a child with special needs. He exploited the most vulnerable of the community, by collecting funds and organizing bogus giveaways in an effort to raise money for a daughter who never existed.

But the lives of fathers with special children are sacred. And the twisted need of an individual to shamelessly mimic the depth of love and sacrifice these fathers make every single day for the sake of their suffering children, is nothing short of sacrilege.

This month, my post is the story of a man whose struggles are real. It is about a father and the dependent son he loves. It is about a young boy who lives with an unimaginable disease that will cause him to be hungry every moment of every day for the rest of his life. These two people; these invisible heroes do not blog or ask for money. They live quietly among us, surviving one difficult day at a time.

This is the true story of Lon and Max Seidlitz.

Max has been diagnosed with Prader Willi Syndrome, a rare genetic disorder that causes an individual to develop an insatiable appetite. The excessive hunger and drive to eat is so powerful that most individuals require 24-hour supervision with all access to food secured. Things like kitchen cabinets, refrigerators, even garbage receptacles must become locked in homes of children diagnosed with this disease. 

But there is more to PWS than just a starving child, there are other symptoms that for most families are just as difficult to manage, things like behavioral meltdowns, obsessive compulsiveness, skin picking, obesity, diminished pain sensation, seizure potential, gross and fine motor weaknesses, speech issues, scoliosis, cognitive delays and social difficulties.

Hungry: Living with Prader-Willi Syndrome - By Maisie Crow from liveBooks on Vimeo.

While Lon is currently raising his son Max (17), he also has a daughter Courtney (18) and two step daughters: Carly (32) and Jessica (29).  He is quick to point out that he considers all of them to be his own; and although he is currently living alone with Max, he would like to emphasize how he has spent much of his life giving to all of his children.

Lon and Terry divorced when Max was five-years-old. At that time, Max lived with his mother and sisters in South Carolina.

“Terry is a wonderful mother. She cared for Max for the first nine years of his life while also raising three teenage daughters mostly on her own.” Like Lon, Terry has sacrificed much of her personal life in trying to accommodate Max’s unique needs. But despite all of her hard work, Max began to struggle in school. His symptoms of PWS began to worsen. His food-seeking and behavioral issues escalated.

Lon and Terry found the educational institutions, to be woefully unprepared in their ability to meet the unique needs of children diagnosed with PWS. Food access was not secure and often the center of classroom and holiday events. Teachers were not educated on the strong food-seeking desire and accompanying anxiety that is overwhelmingly distracting to children like Max. Because of this, individuals diagnosed with PWS struggle to control their behaviors and without the proper school supports in place, they can become easily enraged. Teachers with no specialized training can further escalate this volatile behavior.

By the time Max Seidlitz reached nine-years-old, his weight ballooned to almost 200 lbs and his behavior became unmanageable. He was a child in trouble. This heartbreaking scenario is all-to-familiar to many parents of children diagnosed with PWS. But Lon and Terry would receive further heartbreak and sadness when news came from the South Carolina school system that a residential placement was needed for Max with the closest facility being in North Carolina, a 7-hour drive for Terry, a 9-hour drive for Lon.


“I wanted no part of it,” says Lon.

And so, in 2003, Max Seidlitz moved to Maryland to live with Lon.

“I wasn’t ready to give up on him as the school system in South Carolina had…. I knew I had to step up to the plate and care for my son…. I felt he could get what he needed here in Maryland, where there are some of the best schools and hospitals in the country."

Lon has worked for over 20 years as the owner/operator of Advance Pool Service in Elkridge, Maryland. One of his first steps in caring for Max was finding an appropriate school. After several mishaps of placements, changes in IEP’s, development of behavior plans, which involved almost daily phone calls and weekly meetings, Max was finally enrolled at the Chimes School in Maryland, a private school designed specifically to educate children with special needs.

“They were able to do what no else had, get his behaviors in check and educate him!” says Lon.

But despite the school’s interventions, children with PWS experience rigid thinking patterns that can contribute to escalating behaviors. It is at these times that Lon is the most concerned, and although he is busy at work, his mind still worries about Max.

“I wait each day for a phone call wondering what situation may be happening at school, and what I may have to do to help resolve it.”

Also as a father, Lon says the world does not always listen to his perspective. “I found that teachers and doctors did not listen to what I had to say…. When you’re a Mom they take you more seriously but when you’re a Dad they don’t think you have a clue!” He complains of the many struggles he has faced dealing with educational systems, hospitals and insurance companies. “It never ends, you’re always fighting.”

In an effort to provide his son with some independence, Lon has given Max and after-school job at his pool shop, where Max has the responsibility of helping out with daily operations. When Lon returns to the shop, usually by 6 pm, they head back home together; where they complete homework and prepare dinner together. Having set meal times is critical to individuals diagnosed with PWS since they often anxiously anticipate the next scheduled time to eat.

In caring for Max, Lon has developed some unusual skills, like becoming somewhat of a nutritionist, learning about food, recipes, and diets. He has placed his son on a low calorie diet to support the weight loss necessary for individuals who unfortunately burn calories slower than most. Max now maintains a healthy weight and gets plenty of daily exercise with his father.

 Eloping is also a common occurrence for children with PWS. This is when a child escapes from the home at night in the desperate search for more food. To address this serious behavior, Max was placed into a psychiatric hospital where he received treatment to help control this life-threatening situation. Lon has also now secured his home and kitchen area with an intricate alarm system to ensure Max is kept safe at all times of the day and night.

“Thankfully, this behavior has been resolved,” says Lon, “as I cross my fingers!” 

Caring for children diagnosed with PWS is an overwhelming struggle for two parent families, but for individuals like Lon, who is raising his son on his own, it becomes the focus of his entire life. By providing a very structured and fulfilling life for his son, Lon has given up much of his own personal happiness.

“My biggest challenge raising Max is that he IS my life. He is so much of my life, that I don’t really have a life any more…. It is my personal life where I lose pretty much everything.”

But Lon credits many family members in his life for giving him and Max so much of their support.

“I need to give credit out to my step mother, Surrell.” Lon explains how she has spent many days caring for Max, taking him to art museums and teaching him about the history of the Seidlitz family. She organizes art projects for him and coordinated Max’s first successful overnight stay this past spring.

Lon thanks Grandma Carol, his ex-wife’s mother who lives in Delaware. She provides care to Max for several days at a time. It is here that he is also able to visit his older sister, Carly.

Max also has many visits with his Mom, Terry, in Myrtle Beach, where he is able to see both Courtney and Jessica. “I have to give Courtney and Jessica credit for really taking Max in and being there for him with much love and support.” says Lon.

Another favorite visit for Max, are his trips spending time with his grandfather, Pop Pop Kev and his beloved Black Labrador dog named Smoke.

Lon credits many wonderful care givers for making his life with Max possible. These individuals include: Ahmed, (of whom Lon is the most thankful), Ms Ruth, Beth, Sophia, Trish and Max’s most favorite, Jennifer Lewis.

Lastly, Lon thanks his ex-wife Terry, for despite their divorce, they worked closely together to meet the changing and demanding needs Max required.

“My ex and I have remained friends through it all for the sake of the children.” says Lon.

When asked what Lon wants the world to know, he answers without hesitation.

“I want people to know that PWS is REAL. That my son has a disability, and it is a real disability. I want teacher and doctors to know more about PWS so they can care for my son and others who have this syndrome. Max may not look like he has a disability, but he has been diagnosed with PWS, and despite this diagnosis, he still deserves to be treated like everyone else, with all of our love, care and respect."

When asked what is the most rewarding thing about raising Max, Lon will tell you…

“I’m very proud that I did it. I’m proud of what I have been able to do for my son. It hasn’t been easy. But I watch Max and I see how far he has come…. Max will be with me forever, if he wants. I have discussed this with him. He knows that he is welcome to live with me, or in a group home. It’s up to him. I picture myself living happily together with Max, retired on the Outer Banks somewhere.”

Lon Seidlitz is a real father to all of his beautiful children.  He lives his life with his son, one precious day at a time. And it is because of Lon; that one young man diagnosed with PWS will enjoy the happy and healthy life that he deserves.

This is what it means to be the father of a child with special needs.

This is the sacred relationship between a father and his son.

It is these invisible heroes who deserve our attention, our understanding and most of all our respect.

Thank you Lon and Max for sharing your story with us.


If you would like to contact Lon and Max, they welcome your emails at: 

* All photographs and “Hungry: Living with Prader Willi Syndrome,” a photographic video, were developed by Maisie Crow, a talented photographer and producer.

I would like to thank Maisie for her incredibly moving portrait of this special family. I thank her for her beautiful contribution to raising awareness of Prader Willi Syndrome and for showing the world the difficult issues families who are living with this disease face each day. For this and other poignant photographs and videos, please visit her website at:

For more information about Prader Willi Syndrome visit:

Thank you also to Latham Centers for posting this video and giving me the idea for this story. Please visit them at to see how they too contribute to the lives of so many diagnosed with PWS.

 If you would like to read more about the Peters family, come visit us at:

Wednesday, July 27, 2011

Excuses, Excuses

I missed my Hopeful Parents deadline last month.

I haven’t posted on my blog since May.  

The writing wheels came to a halt sometime at the end of the school year when I was inundated with school functions, IEP meetings, and the dreaded mediation with the school district -- the usual stuff. 

And then my mother’s illness worsened.

The words stayed trapped in my head, swirling and spinning and I avoided putting any of them on paper. Too raw. Too hard.

I flew across country two weeks ago with my family and spent a precious few days with her. The images and conversations from those days both haunt and comfort me. I scrawled some of them into my notebook but I can’t look at them. Not yet.  

I know I will write about it. I know I will write about being right there with her when she passed away. I know I will write about how being the parent of a kid with special needs gave me the strength and skills I needed to help her in those last few days. I know I will write about Oscar’s reaction, Ruby’s ease and Abe’s compassion. And I know I will write about our ordinary life again.

But I’m not ready. Not yet.

Tuesday, July 26, 2011

Sunshine and Rainbows

We just returned from two glorious weeks at a cottage.

I never thought I would type a sentence like that one (at least not unless it was a work of fiction).

In one sentence I wrote two weeks + cottage + we = glorious

Don't get me wrong - it wasn't all sunshine and rainbows

But there was an abundance of sunshine, laughter, good food and cuddles

There were splash fights at the beach and helping our seven year old to rediscover his love of the water

There were arguments and tears and sullen silences as well

There was even quite a bit of melodrama and anxiety over some unresolved issues with a beloved summer camp and our oldest boys crushed spirit

But I stood back at one point and I took some deep breaths

And I remembered back to one year ago when we were so afraid we had lost our son forever to the depths of mental illness

And I realized how glorious my life is right now

And I tried not to let the waves of regret hit me too hard as I realized the years that we had spent drowning in the crisis of each day, barely surviving let alone thriving, had robbed me of just spending time with my children and husband.

The years of anxiety and advocacy - fighting tooth and nail for every speck of service I thought I could even remotely scrounge for my child and our family. The training, the reading, the researching, the phone calls, emails and meeting after meeting.

It had consumed who I was

And I let it stop me from flying kites and making sand castles. I allowed it to take all my energy so that my kids had never made a pizza at home, we rarely played games anymore and I had never taught my youngest how to build houses and towers out of cards

So we went on vacation and every day we curled up and read. We played for hours at the beach. We made 27 paper airplanes (and not just plain old airplanes but really complicated ones that I was determined to figure out how to make from confusing directions in a book). We made pizza TWICE and I took pictures.And my youngest showed me how determined he is by spending hours perfecting his technique at building card houses.

One night we sat around the table, eating Taco's as my husband and my boys talked and laughed. I wiped tears from my eyes.

THIS. This was what it was all about. I willed myself to take mental snapshots of this moment. THIS was what years of painful, heartbreaking and life threatening infertility treatments had been about. THIS is what the adoption classes and piles of paperwork had been about. THIS is what I had been fighting for so long for.

A family

My family


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



What's your definition of fatherhood?

The very first time I met my oldest daughter she was in an incubator in the neonatal intermediate unit (NIM).  I remember thinking: She is four weeks premature so this is the most logical place right? She was the surviving twin so perhaps she needs to be 'cooked' a bit longer. Yeah, that's it...then all will be right with the world.

As a first-time dad, my walk into that room was nerve-racking. One large room filled little plastic rooms of new babies. I was all alone because my wife had a post-c-section infection that kept her from spending the first 72 hours with our daughter.

The nurses treated me like the other young parents there. They were rude. They made me feel like her prematurity was my fault, like we had done drugs or something. Some eventually warmed up as they taught me new skills and witnessed my dedication to learning the business of fathering.

My first peer into that tiny isolette was our second meeting. The only thing I had noticed that was physically wrong with my new daughter was that she had a slight, upper cleft lip, which the nurses judiciously pointed out to me.

They would get excited because it gave them an opportunity to demonstrate their cleft-lip knowledge. They would tell me who is the best to fix it; what the feeding challenges might be; how surgeries would make her look totally normal again.

It was, however, at that very moment when I stared into the little glass house with two little hand-holes on each side, that I was profoundly changed. My daughter, all four-pounds, two-ounces of her, represented the purest and most flawless beauty I'd ever seen. I was head-over-heals-in-love.

As that love grew into form of inexpressible words, her cleft lip as “a flaw” (as it was first pointed out to me) become a faded memory. Despite the fact that she had been born 12 hours before, it was at that very point when I became a father.

I didn't have any clue that five months later she would be hospitalized for failing to thrive. No clue that after her cerebral palsy diagnosis I would make another life transformation into becoming the father of a child with special needs. No clue that she would eventually be defined as “severely physically disabled.”

Nearly nine years later, I'm remembering those early days not because I think they were better or because I was naive about the future, but because first and foremost, I defined myself as a father. I changed her diapers. I made her smile. I fed her. I removed my t-shirt, pressing her warm skin against mine until we became whole and inseparable by our exchange.

I never saw what the nurses had talked about. It wasn't that I couldn't see but rather because she was mine and I was hers. We defined who we were going to be to each other first, ourselves, separate but the same. It was much, much better than the love I had ever imagined.

In a world where nearly everyone has to have a scientific explanation, a definition or all of the answers for just about everyone and everything, I've learned a few lessons about the definitions of fatherhood:

  • I've learned that everything else, the medicine, the therapies, the causes and effects, the science behind it all, are secondary to the spirit of being a dad
  • I've learned that fatherhood will always be MY definition, just as my children are, not that of scientists, governments, insurance companies, healthcare facilities or other institutions
  • I've learned fatherhood is never as easy as I hoped it would be, but also never as hard as I imagined either
  • I've learned that defining myself as 'a dad of a special needs child' (or children in my case), is not what makes me whole, but rather just being a plain old-fashioned father like many other fathers
  • I've learned that acceptance as an act of giving into my natural role (and sometimes unnatural) as a parent is more important than any other definition in the world.

While I could endlessly write what my definition of fatherhood is I'm more interested in hearing about your defining moment as a dad or a parent. Feel free to leave it in the comment section below or on my blog.

You can learn more about Tim Gort here.

Monday, July 25, 2011

Believing in Yourself

Confidence is a tricky thing when you are on the edge looking over at kids who are typical and you are outside of the typical curve. Such is the situation when you’ve had physical or intellectual delay.

You’re 2 and your playmates are walking. You aren’t.

You’re 2 1/2 and your parents are thrilled you speak in two word sentences!

You’re 3 and you can’t quite keep up with the kids who climb, run or jump.

You’re 4 and you can be understood about 50% of the time.

Every milestone watched and recorded.

Every deficit noted, worked on.

You’re 8 and you’re struggling with reading.

You’re in therapies every week.

More assessments.

You struggle.

You’re not the same as your peers and your circle of friends is small.

You’re getting older and you realize there are still differences.

It’s hard to believe you are smart when people are always testing, testing, testing you.

You see it as people constantly judging you.

They are helping you reach your potential.

It feels like criticism.

When you’re young it’s hard to look at your deficits that people monitor all the time and internally devote equal time to your supreme qualities to help your confidence grow.

Like your sense of humor and quick wit.

Like your smartness.

Like your tenacity.

Like your ability to fix something and problem solve.

Like your compassion.

Like your strong will.

Maybe if the people who love you unconditionally tell you enough you will believe. You are lovable, smart, funny, enough, unbroken, splendid, caring, giving, perfect, wonderful you.

Saturday, July 23, 2011

We Need A Better Approach

I’ve written several times in the past on my personal blog about the user of restraints in the school setting.  I believed then and I believe now that restraints should not be necessary and not used. I understand the rationale I hear from school staff that they are only restraining to protect the child in the middle of a meltdown as well as the other children in the classroom or school. However, my belief is that were proper supports in place prior to the meltdown, perhaps the meltdown would not have happened at all. I am not in a classroom and I do not have a group of 20 or more students, some of whom may have disabilities which may result in outbursts of anger and aggression. But, I am the parent of such a child, and I have learned over the nine years that I have parented her that there are other, better ways to diffuse a situation.

Several years ago, an article appeared in the  New York Times titled, Calm Down or Else. The author of the article describes several situations in a school classroom in which physical restraints were used. While on the surface, some of the restraints may have seemed appropriate, others described were obviously mishandled situations. The author poses the question “Have the incidents of restraint being used increased because more and more children with disabilities are being mainstreamed?” Again that supposition screams out to me that the proper supports are not in place. Asking a general education teacher who has not been trained in special education services to anticipate issues encountered by a child with an emotional disability is not going to work. Train that general education teacher – provide appropriate special education support in the general education classroom – teach everyone to notice the triggers that may set a meltdown in motion – in other words, know your students, anticipate their needs, and always be aware of the nuances of behavior occurring in the classroom.

The author ends his article with the concerns that unless schools adopt policies and standards, and unless those things are clearly communicated to parents and school staff, abuses and even deaths from improperly applied restraints will continue. And, as one of the experts cited in the article says, some parents want their child restrained and some are vehemently opposed, further complicating the jobs of those professionals who are caught in the middle of the fray.

I believe it is time for a national look at this issue, and while that is happening, I believe school systems need to adopt some transitional policies and standards to ensure the safety and RESPECT of each and every student in their classrooms. And just for the record, I DO NOT WANT ANY OF MY CHILDREN RESTRAINED.

**Special Note**
One exception to my stand on never restraining a child in a school is that situation where a child has brought a weapon to school. At least in my school district, all schools have a resource (police) officer assigned to the school. That officer is trained to handle weapon related situations, regardless of the age of the offender and should be the first to respond. However, if the situation is such that a teacher must act to protect others from the actions of a student with a weapon, I certainly pray that teacher has been trained and is capable of subduing the child who has the weapon.

Friday, July 22, 2011

Autism by Automobile

Ever have one of those moments that you freeze in your memory banks and play back at a later time and wonder “What was that?”  When you have a couple of children on the spectrum, you have several or many of those times logged away that you ponder over later—usually when trying to desperately fall asleep to log some zzz’s before the crack of dawn.  I had one of those surreal times that wasn’t horrific, earth shattering or desperate a couple of weeks ago.  It has just stayed with me as I shake my head and wonder how anyone else could possibly step into my shoes and survive with any semblance of sanity. 

This story is true.  The names have been reduced to initials to protect those “identified” and even the one who should be.  This isn’t for the faint of heart (like my mother or anyone else who just doesn’t “get it”).  For those of you who live this life like I do, day in and day out, I hope that it is a funny story.  You know, not funny ha-ha but funny in I have to laugh or I will cry until the make-up runs down to my knees way.

C. & B. had follow-up appointments with their developmental specialist in a place that is over an hour’s drive from our house.  For many, the thought of being in a car with 2 kids on the spectrum is enough to scare them witless.  They should stop reading now.  For the rest of us, this may be a common occurrence that repeats itself with frightful regularity.  Both boys were due to have “med checks” as well.  (Read, are their current pharmaceutical interventions helping or do we need to change the doses?)  You can guess what type of appointment this was going to be as I was going to be requesting increases for both.  They are growing boys with growing “issues.”

Throw in the fact that we weren’t taking the van as the AC wasn’t working, so we are dealing with an issue before we even left the driveway.  Even though both boys can pester each other with amazing abilities in the van, there is a bigger buffer zone between them.  In the car, not so much.  We planned on leaving early enough to account for the drive, traffic, having to find a parking lot in the labyrinth of a parking garage and to attempt lunch out.  (Quit laughing!!)  I had the toll $ ready, extra pull-ups, the portable DVD player charged, drinks and a snack (if necessary) and steeled myself for the journey with extra caffeine. 

Planning does not take into account the barrage of conversations from 3 different voices all at once aimed—of course—at the driver.  My husband, P., does not have an “official” diagnosis…but really should.  He added to my headache by launching into his own observations about whatever sports story he was jabbering about while trying to include me in his conversation.  C., my older son, kept interrupting and commenting and then branching out on his own tangents.  B., my younger son and the bearer of the most diagnoses, was repeating lines from different DVD’s while yelling “cow!” every so often when he spotted a bovine group.  We hadn’t even traveled 20 minutes before my nerves were getting frayed.  Then P. and C. start the obsession about the time and asking “When are the appointments again?”  I repeat my answer at least 3 times to satisfy both of them.  B. screams when his brother starts whispering to him.  Then screams again when he notices a deer.  P. tries to change the radio channel to ESPN—not going to happen.  C. starts the bet about how long it will take us to get to our destination.  The bickering continues.  How many of us deal with this on an ongoing basis?  Seriously, I am less distracted if I was hooked up to a cell phone’s hands-free device, eating and trying to change the radio station all at once.  (NOT that I do that…it is an analogy!!) 

Skip ahead, to an hour into the journey and we are trying to navigate traffic for lunch.  I will save that story for another time as eating out is always a challenge.  Suffice it to say that the “chatter” from the car spilled into the restaurant booth with me trying to answer three questions simultaneously as I place our order with the wait staff.  Hurry up and get through lunch to rush back to the AC since it was quite humid.  Strap B. in his seat, remind C. through clenched teeth not to bother his brother.  P. says we are going to be late.  I consider stuffing him in the trunk.

Arrive at our destination after incessant bickering and failed attempts at distracting everyone by turning the music up to a lovely song.  (At least I thought so.)  Drive up 5 lousy decks to find a parking spot only to have P. and C. make a bet about the exact moment we will be at the reception desk.  Grab B’s hand to prevent an automotive calamity as we race through the parking garage to one elevator to go down, through a hallway and foyer, to another elevator to go up to our floor.  We race past the resin statue of a “Doctor Kangaroo” and other delightful items that can distract B. from moving 2 feet at a time to arrive at the reception desk.  You can imagine how the appointments went after all of that.  Fortunately, our doctor gets it, understands, and tries to accommodate as best as possible.  After all, this is a typical Thursday for her.  Over 90 minutes later, and we are heading back to the car, new medication orders in hand, a new diagnosis to add to B’s vegetable soup, and 2 packets to complete for both boys to be added to a research study.  (And yes, I voluntarily agreed to that.) 

Strapped back in the vehicle after bathroom stops, pushing the button on every drinking fountain in sight and walking the winding way back through the garage…I pause.  I take a deep breath and rest my head on the steering wheel.  There is a rare moment when everyone stops and just looks at me.  I collect my patience from the deep well reserve within me hoping that it won’t run dry on the way home.  I take another breath and turn the key.  The moment of peace has passed and the barrage begins again.  And to think, I get to have this drama almost every time I am behind the wheel.  If I won the lotto…I would hire a chauffeur. 

I have left out more details since this would turn into an epic work of bizarre stream of consciousness babbling that could rival my reading of a couple James Joyce works.  Suffice it to say that we parents deal with far more than just diagnoses, advocacy, therapy and untold stress.  Sometimes, getting from point A to point B is more involved than most people can possibly understand.  Our normal is their Twilight Zone.  For all of you special parents out there stay safe and may you arrive with some semblance of sanity intact.  And if you know of a very cheap chauffeur…drop me a note.

Thursday, July 21, 2011

The Vast Potential of Every Waiting Room

There are a few things that virtually all parents who have a child (or children) with disabilities have in common, and one of them is this: we spend time in waiting rooms.

A great deal of time. 

Ugly waiting rooms full of uncomfortable chairs covered with institutional mustard-colored vinyl. Beautiful waiting rooms, softly lit and filled with home-like furnishings. Waiting rooms that are well-stocked with clean toys and waiting rooms that contain nothing but two ancient copies of Golf Digest. 

I don't care what they look like because I have learned to love waiting rooms.

Strange, I know. In the beginning of this long journey, when we were chasing all over town trying to find appropriate doctors, diagnoses, and treatments, I hated waiting rooms. The boredom! Other people's noisy children! My own unruly child! The wasted time! 

In the past two years, though, I have discovered that there is no better place to make friends than in waiting rooms. In fact, it was in a waiting room that I met the woman who invited me to join the support group she had co-founded, a group just for parents of children with mood disorders.

Raising a child with disabilities is an experience (like so many others) that can only be understood by the people who are living it. No matter how sympathetic and understanding the other people around us are, the only people who get it are the people who are in it. 

And we all need to have some people in our lives who get it. Nothing since Carter was born has improved our lives as much as finding our support group. To sit, every Saturday morning, with a group of parents whose children have issues similar to Carter's, is akin to taking a long drink of cool water after days in the desert. 

We don't have to explain ourselves; we all live with the specters of suicide, imprisonment, and catatonia, and we all make the enormous effort, in spite of all that, to plan for education, jobs, and fulfilling lives for our children. 

But we don't have to say any of that.

If I walk into the room on a Saturday morning and say, "Wow, it's been a terrible week," everyone is tuned to my frequency. Bad week probably means life-or-death struggle. It doesn't mean that the water heater sprung a leak or the car broke down, unless cold water and broken cars make our kids unstable. 

We can use our gallows humor without backpedaling, reassuring each other that we're just kidding, or we really do love our kids, or we won't actually punch the doctor, send our child to be raised by wolves, or start swilling vodka all day every day. 

We can say what we want and never worry that the response will be judgmental or pitying, and if there is advice it will come directly out of personal experience.

As it turns out, that connection was what I needed most in the world. I need all kinds of other things, too, but to be around people who understand, to give and receive love and support, is what has changed me. It is what makes it possible for me to stay functional (mostly) and be happy (sometimes) in the face of Carter's mental illness and the enormous fallout that has resulted. 

Is it any wonder that I see every waiting room as a place of limitless potential? Waiting for Carter to have blood drawn last week, I met a woman. We talked as much as we could over the sounds of our (unfed, unmedicated) children and exchanged phone numbers. I expect this to be the beginning of something wonderful.

Tuesday, July 19, 2011

Letting Go Of My Magic Wand

Normally I don't repost blog entries here, but my cat just walked across the keyboard and the lovely, uplifting post I just spent about three hours working on seems to have disappeared into the ether.  This is probably an indication that I should quit writing my posts the night before they're supposed to be published.  Also now instead of wanting to recreate that post, I just want to write a list of bad names I would like to call my cat, which is not very productive and kind of off topic. 

So instead of spending another three hours rewriting that post and then going to bed at some ridiculous hour I'm going to take the lazy way out tonight and repost an entry from my blog.  Sorry about that people; I'll try not to make a habit of it.   


So my posts in the past few weeks may not have been the most interesting things in the universe.  Some of them have probably bordered on boring.  That's because we haven't had a whole lot going on around here.  But you know what?  I kind of like boring.  Especially when the alternative is the kind of day we had today.

The short of it is that Connor had eight seizures, we used pretty much every form of emergency medication available to us at home, and then he spent the rest of the day sedated and sleeping.  He's been asleep now for about nine hours-- since around two in the afternoon.

He's not running a fever.  He doesn't seem to be sick.  He hasn't gained a ton of weight or been under a whole lot of stress.  Yesterday he was fine.  Today he spent in an exhausted, seizure induced half-coma.

So we have absolutely no idea what tomorrow is going to look like.  Either Connor will make a mysterious and miraculous recovery and we'll have no idea what the heck that was all about, or we'll go to the hospital.  It's going to be one of the two, and while I'd really like to think it's going to be the former I get the feeling that I should probably go ahead and pack an overnight bag.

It's been a good run-- we've gone about four months without being admitted, which is a relatively long amount of time for us.  It's pretty frustrating, though, to continually get blindsided by this sort of thing.  I mean, one day the kid is fine, and the next-- BAM!-- he's not.  Sometimes I can almost manage to forget that we have a child who could literally die on us at any moment.  Then we have a day like this and reality comes crashing back in.         

When we first got the news that Connor was going to have some serious medical issues, when I was halfway through my pregnancy, I remember reviewing everything I'd eaten over the past four months.  I'd picked some blackberries on the side of the road one day; had they been covered in pesticide?  Did I not drink enough water?  Did I exercise too much?  I was looking for someone to blame for the fact that I was most likely going to lose my child, and the easiest person to blame was myself.  I absolutely did not cause Connor's disabilities, but it took the results of a genetic test several months after his birth to completely absolve me of the last of that guilt.

I find myself having to be really careful not to do a similar thing with Connor's seizures when they come on so suddenly like this.  Did I leave him in one position too long?  Feed him too quickly?  Logically I know that there's no way I could have caused him to have them, but it's difficult to get rid of that magical thinking because of the other side of the coin: if I caused him to have seizures by leaving him in one position/not paying him enough attention/singing the alphabet song backwards/insert completely ludicrous activity here than I can magically solve the problem simply by doing or not doing whatever one of those things is needed to make the seizures stop.  We all want a magic wand that we can use to fix our children when things like this happen.  I think mine is out of batteries right now; I keep waving it and nothing changes: Cinderella stays a chambermaid, the pumpkin stays a pumpkin.  My son's seizures don't magically disappear, and we're running out of medication options that don't involve dangerous side effects. 

I suppose that's the nature of life.  Life is a heartbreaking, wonderful, sad, terribly beautiful thing, and we don't get to wrap everything up in a nice fairytale happy ending, no matter what the Lifetime Movie channel might tell us.  We don't choose the paths our children walk any more than we choose our own.  No matter how much I'd like it to be true, I can't change the fact that Connor has a difficult and bumpy road to travel.  I can do my best to smooth his way, and make his journey as happy and fulfilling as possible.  But I don't get to control where his journey ends, or how it ends.  That's not my decision to make.  That's a hard truth to come to terms with, but it's an important one.  I can't control how much time I have with him, or for that matter, anyone else, but I can choose how I use that time.  And weighing myself down with guilt instead of focusing on what things I can do for my son is not the way I want to spend it.

So I'll go in to Connor's room tonight, and kiss his small cheek, and stand over his bed for awhile, watching him breathe.  I'll pray that I'll get the chance to stand over his bed many more nights, doing the same thing.  I don't know how much time I have with him, but then I don't know how much time any of us has.  I just know I want to spend every moment I can filling him to the brim with love.  And with every smile, he reminds me why I started this whole crazy journey of parenthood in the first place. 

I love you, little guy.  Every step of the way.



The events in this post occurred the day before yesterday.  I am thankful to say that we did not spend the next day in the hospital, and Connor is doing well.  Hopefully he'll stay that way for a long while!

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


July 19th.  A year to the day from when I started blogging.  My 12th Hopeful Parents post.  Two years this week from Pudding seeing a Speech Language Pathologist, and the dawning realization that autism was part of our life. 

Time is on my mind lately, with just twelve days left in this country, it is impossible to think of anything else. 

I should be in a frantic rush of panic and organizing, but the urgency just isn't there.  I can't bring myself to think of time as running out, time is just going round.  I'm constantly hit with déjà-vu, I've seen this before.  I've done this already.  We were past this point, weren't we?

Just as we are revisiting and reinforcing the concept of time at home with Pudding, so her teacher does the same at school.  Every day we add the date to her velcro calendar, and every day talk about how many days left.  But it hasn't sunk in with me, so I can't believe it has for her either.  Regardless, time is moving on.

It dawns on me that this isn't a straight race to the finish line, I'm doing laps.  Two years have brought incredible change, and yet some things appear entirely the same as they were.  But they're not.  We have changed, learned and grown, even as we see there is much further to go on this course than we realized. 

This track is a series of bends from paper cuts and straights with sweet rewards.  There are days when I feel like we're gaining ground, and other times where I feel like I'm just spinning my wheels.  Yet even on those tough days, I still have my two reasons to be hopeful.

And 12 posts on, a year on, two years in- that is still good enough.  I'm ready to go for another lap on a different course.  Care to come along for the ride?

Monday, July 18, 2011


Rojo started his summer job on Tuesday, July 5th. He rode his bike the four short blocks to Sandy’s house, the woman that runs a preschool in her home. I followed along on foot and Sandy quickly shooshed me out the door, “You’re more anxious than I am, Mom, go on, he’ll be fine.” I came back to get him at 1:00 (four glorious hours later) and he looked exhausted but happy, so did Sandy. “He did great, Mom,” she said.

He was pretty wiped up (and a pain-in-the-*#@) for the rest of the day, but Wednesday he was much more settled and full of stories, too. “God, those kids just love me,” he kept saying. “They can’t get enough of me.”

Sandy called Wednesday night, “It’s only been two days, and I’ve already seen such growth, he’s really doing well, I’m very happy!” Oh, and did I mention that she is a retired special ed teacher? While her preschool is full of “typicals” (for the most part), she knows a thing or two about the “exceptional learners.” “I’d like to work with him on his eating habits, if that’s okay with you.”Is that okay with me?

Is the Pope Catholic?

So, we are a few days into it now and Rojo is trying a few new foods, he’s now getting himself totally to work and back without me following behind and checking to make sure he turned at all the right corners. He’s learning how to clean up after others, how to model good behavior, to help work out conflict between a couple of three-year-olds.

I know some parents who get defensive and weird when other adults in their village step in and in some ways, take over. I, for one, am not one of those parents. I am happy to move over, back, way over there, wherever you want me, please, here are the reins, take them. Giddy-up!



Sunday, July 17, 2011


"The hoofbeats ain't comin my friends. We ARE the cavalry."

- Diary's Facebook status back in May and now one of my favorite reminders to myself. 


My friend Rachel chuckled a little. "Jess," she said, "I hate to say it, but it just amazes me that you, of all people think there's a cavalry for ANYONE."

I'd called to tell her how much it irks me that nearly everyone with whom I speak about the Caring for Military Kids with Autism Act (CMKAA HR 2288) assumes that someone in my family must be in the military. They simply can't seem to absorb the idea that I would spend my time and energy advocating for military families with autism unless it was personal.

Guess what? No one in my family is in the military. It's still personal.

I am a pacifist. I hate everything about war.

I think we should get the hell out of Afghanistan and I don't think we ever should have been in Iraq. I don't even know what to think about Libya. I find the things that happen in the context of war abhorrent.

I believe in diplomacy. I believe in reason. I believe in finding common ground. I also believe that diplomacy and reason don't always work and that when faced with really bad people with really big guns whose only goal is wiping us off the face of the earth, there isn't a lot of time to find common ground.

I am a pacifist. I hate everything about war.

And I am grateful beyond measure to those who sacrifice so much - who leave their families; who miss births and birthdays, holidays and graduations, family dinners and kisses goodnight - all to put their lives on the line to protect US when the wolf is at the door.

I am grateful to those that they leave behind - who live as single parents, who pick up and move to entirely new places when the order comes, all while carrying the constant fear that their soldier may never come home.

And what of those who live that life with a child with special needs? My God, what then? According to the Department of Defense, 1 in 88 military dependent children has autism. 1 in 88.

How does one explain to a child with autism where Daddy's gone for 14 months at a time? What if that child doesn't have language? Puts a new twist on the whole thing, doesn't it? 

Of those 1 in 88, TEN PERCENT of them are getting the services they need. TEN PERCENT. I can't live with that. Can you?

You joined the Army at eighteen. You've put in twenty years. You've just returned from your third tour of duty and you're up for retirement. You've served your country with honor and it's time. You want desperately to be an active participant in your kids' lives. 

Not so fast, my friend. Tricare, the military's medical insurance, does not cover autism treatment for the dependents of retirees. At all.

Time to suit back up, soldier.

You call home from Afghanistan. Your wife is in tears. Again. The bills are piling up. She's trying to manage the debt, but it's overwhelming. Speech therapy is $95 an hour, ABA is $110 and the OT is raising her rates yet again. There's no more to borrow.

You tell her to do whatever she has to do. This is your child and he needs what he needs. 

You know full well that as your debt rises back home, your access to military clearance is in increasing jeopardy. Your next promotion is shot to hell. Your ability to do the job you do now might be too.

And so I fight for these families. I fight because these things don't get fixed in a vacuum. I fight because spending manageable amounts of money on intervention saves us unfathomable sums on indefinite care. I fight because it's a matter of military readiness. I fight because it's morally imperative. I fight because I want to see these kids grow into productive members of society. I fight because if I don't, who will?

The hoofbeats ain't comin my friends. It's time to saddle up.

For information on how you can - in two minutes or less, I promise! - support HR 2288, the Caring For Military Kids with Autism Act, please click HERE.


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 rising fifth grader, and eight year-old, Brooke*, a loving, talented, hilarious almost third 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.

Reading Rainbow

I’m on a frantic search through the boys’ bookshelves.

My husband is reading a Frog and Toad story to our youngest, our two year old.  They are laughing together through the story.  My husband calls to me, asking where the other three Frog and Toad books are.  He knows we have them - we used to read them to our oldest son when he was two.  

I’m looking everywhere but I can’t find them.

My eyes fill with tears as I realize that the books are probably packed away somewhere.  Buried in a box with all of the other stories that we tried to read to our middle son Howie.  Stories that he never showed any interest in.  

Quietly I tell my husband that I can’t find them right now.  I turn away before he sees the tears.

We’ve always read to the kids.  When my oldest was born, I took in all the advice from the parenting books and magazines to “read to your child”, even if it’s just the newspaper or your favorite magazine.  Start early, they would all say.  Hand your child the book and let them feel the pages.  The earlier you read to your child, the sooner they’ll start to read.  We read to Gerry all the time.  Our earliest pictures of him show him with a book or with someone reading him a book.  At two years old, he’d sit quietly as we’d read him stories from the giant “Thomas the Tank Engine” anthology given to him as a gift.  A book with many words and no pictures, but he’d sit for hours just listening to it all and asking for specific stories by name.  As he got older, my husband would read him chapters from the Magic Tree House series in bed at night and they would talk about it the next day.  Now at nine years old, he’s flying through mysteries and Encyclopedia Brown stories, and even asked to go to “read and swim” camp taught by his school’s reading teacher.  

My two year old is on the same path.  He’ll suck you in for book after book after book at night.  We’ve spent whole afternoons looking for “Goldbug” in the Richard Scarry books.  I’ll find him in his room “reading” books like The Hungry Caterpillar or Brown Bear, Brown Bear, What Do You See?  Because of his speech delay, the words are slightly garbled, but he’s trying and the trained ear can understand.  He wants us to read to him and chooses his books at bedtime.  It’s his nighttime routine and he doesn’t let us forget it.

All three of my boys have bookcases in their rooms.  Every shelf is filled.  I never say no in the bookstore.

My oldest and youngest have books strewn all over their bedroom floors.

My middle son - his books have been in the same place for…years.

I can’t remember the last time he took a book off his shelf and brought it to me to read.  

We’ve tried.  He won’t sit for a story.  If I’m reading to his younger brother, he’ll come over to listen sometimes.  But he never initiates it.  

When he was younger, he’d sit for a story with my husband.  They had two books that they would read, Hondo and Fabien and Night Driving, both by the same author.  

But then things changed.  Was it that he couldn’t sit still for them anymore?  Or did his obsessions and sensory issues get in the way?  Is it the autism or did we get so busy with helping him with everything else that reading just fell by the wayside?

Snuggling in for a story is not part of his routine. He’s just not interested.

It’s later that night and I'm laying in bed with Howie as he falls asleep.  Through the wall, I can hear my husband as he’s still reading the one Frog and Toad story to our two year old. I'm listening to their gleeful voices reading and laughing together, and trying not to be sad for what didn't happen with Howie. I look over at Howie in his bed and he has a smile on his face.  For a brief moment, I think that he’s listening to the story as well, and laughing along.  I ask him what’s so funny.  He responds with “I was thinking about the funny voice from the show I watched today.”

My eyes fill with tears again.

“Comparison sucks. Completely.” I share this with some friends.

“Apples and oranges,” my friend writes back.

I know that.  I know that my kids are all different and comparing them is not fair - to them and to me.

Still, I can’t help but hope for that day when my son takes a book off the shelf and says “would you read this to me?”

It’s that hope that keeps me on the hunt for those missing Frog and Toad books.

Butterfly in the sky
I can go twice as high
Take a look
It's in a book
A Reading Rainbow
I can go anywhere
Friends to know
And ways to grow
A Reading Rainbow
I can be anything
Take a look
It's in a book
A Reading Rainbow
A Reading Rainbow
” - Reading Rainbow TV Show Theme Song

Saturday, July 16, 2011

Present Pacing

I am not a selfless machine of giving. I never have been.  I love my kids and would do anything for them, but not at disproportionate cost to myself.  There is nothing martyrish about my approach to momming.   But when we become parents of kids with differences, our definition of sacrifice tends to shift a bit.  The result for me is that there are a few phrases that just don’t apply anymore: free time for one and, I’m bored, are 2 such concepts that entirely disappeared when my second child came along.

Like the readers and writers here, I am steeped in strategies and goals for my child in special education, the legal parameters of an IEP, keeping up on medical standards (ie, worries) for my daughter’s diagnosis, paving the way for friendships for her, for real relationships outside the family, trying to stay one step ahead of her communication needs as a non-verbal child, researching and making decisions about assistive technology, ensuring my other daughter is happy, healthy and confident in her path as well.  To that I add disability activism, community building, creating resources for local families impacted by disability, initiating and expanding inclusive options for our local kids, educating community members on seeing people with disabilities more clearly…  It doesn’t leave much unstructured time when you combine those heaps with the regular busy-ness of running a family.  I don’t often stop and think about what developments and focus outside of parenting and disability that the lady in the mirror might like to see.  I go with the flow and I love my “work.”  Not having time to ponder about possible add-ons probably serves me well.

But then my 11 year old, Cate, registered for a 5K run this spring.  She’d run it with my multiple marathon-finishing husband - her first dad and daughter run.  I thought about what the accomplishment might feel like for my daughter and got very excited for her.  I wanted it for her and set to my supportive tasks – making sure she had good shoes, sleep and energy, as well as time to train.  And then I wondered, wouldn’t that have been fun if she and I had registered, too and we'd run together, mother and daughter. We’d be beginners together.  But alas, too bad Addie and I can’t run.

It’s true that my younger daughter doesn’t really run.  Well, she does a run-like move for a few steps, but distance jogging is not particularly likely since a half block is as far as she can walk.  Nope, Addie doesn’t run, so I guess she and I will cheer for Cate and dad at finish lines evermore.

But I am me, separate from Addie. I do have legs that will run if I tell them to…

Oh no, wait a minute. I cannot run, silly me. I think of the muscular, disciplined women who run, their devotion to their sport, their sheer endurance and ability. And I think that is not me, I am not one of those kinds of moms. 

Which is exactly what I used to think upon witnessing the finesse and power, the staid control of a mother escorting her child with differences in ability through the world with strong, clear, focused love. 

That was over 3 months ago.  The longest I’ve gone without running since is 2 days.  I am not fast.  I am not the best.  I am not pristine in form.  But I am a runner.  My mind tells my feet, my shins, my knees and quads, my heart, my lungs, my fists what to do and how to feel about doing it.  And they do what I say nearly every time.

When I run I am alone – that in and of itself is a rarity enough that I am still grateful for every moment.  When I run it’s not about evoking a reaction from anyone else, not about doing what’s best for someone external to me. When I run I pause from concern about long term gains or connections that could result in relationships that lead to employment or independent living…  Decisions are limited: I pick the roads that feel right to no one but me.  I alter my foot strike based on what’s best for me.  The sweat beads that drip off my elbows are a result of a gift for me, confetti.  The personal best I reach is a private celebration between me and me.

I take one hour every other day - just claim it and take it. That hour and the lasting trail of grateful gladness that lingers after it make everything else that fills my life feel more...mine.

What present will you give yourself today? (presently neglected word blog) (fairly well-tended image blog)

Present Pacing

I am not a selfless machine of giving. I never have been.  I love my kids and would do anything for them, but not at disproportionate cost to myself.  There is nothing martyrish about my approach to momming.   But when we become parents of kids with differences, our definitions of sacrifice tends to shift a bit.  The result for me is that there are a few phrases that just don’t apply anymore: free time for one and, I’m bored, are 2 such concepts that entirely disappeared for me when my second child came along.

 Like the readers and writers here, I am steeped in strategies and goals for my child in special education, the legal parameters of an IEP, keeping up on medical standards (ie, worries) for my daughter’s diagnosis, paving the way for friendships for her, for real relationships outside the family, trying to stay one step ahead of her communication needs as a non-verbal child, researching and making decisions about assistive technology, ensuring my other daughter is happy, healthy and confident in her path as well,  disability activism, community building, creating resources for local families impacted by disability, initiating and expanding inclusive options for our local kids, educating community members on seeing people with disabilities more clearly…  It doesn’t leave much unstructured time when you combine it with the regular busy-ness of running a family.  I don’t often stop and think about what developments and focus outside of parenting and disability that the lady in the mirror might like to see.  I go with the flow and I love my “work.”  Not having time to ponder about possible “add-ons” probably serves me well.

But then my 11 year old, Cate, registered for a 5K run this spring.  She’d run it with my multiple marathon-finishing husband.  I thought about what the accomplishment might feel like for my daughter and got very excited for her.  I wanted it for her and set to supporting her – making sure she had good shoes, sleep and energy, as well as time to train.  And then I wondered, wouldn’t that have been fun if she and I had registered and run together, mother and daughter. We’d both be beginning runners.  Too bad Addie and I can’t run.

It’s true that my younger daughter doesn’t really run.  Well, she does a run-like move for a few steps, but distance jogging is not particularly likely since a half block is as far as she can walk.  Nope, Addie doesn’t run, so I guess we’ll cheer for Cate and dad at finish lines evermore.

But I am me, separate from Addie. I do have legs that will run if I tell them to…

Oh no, wait a minute. I cannot run, silly me. I think of the muscular, disciplined women who run, their devotion to their sport, their sheer endurance and ability and I think that is not me, I am not one of those kinds of moms. Too bad for me.

Which is exactly what I used to think upon witnessing the finesse and power, the staid control of a mother escorting her child with differences in ability through the world with strong, clear, focused love. 

That was almost 3 months ago.  The longest I’ve gone without running since is 2 days.  I am not fast.  I am not the best.  I am not pristine in form.  But I am a runner.  My mind tells my feet, my shins, my knees and quads, my heart, my lungs, my fists what to do and how to feel about doing it.  And they do what I say nearly every time.

When I run I am alone – that in and of itself is a rarity enough that I am still grateful for every moment.  When I run it’s not about evoking a reaction from anyone else, not about doing what’s best for someone external to me. When I run I pause from concern about long term gains or connections that could result in relationships that lead to employment or independent living…  Decisions are limited: I pick the roads that feel right to no one but me.  I alter my foot strike based on what’s best for me.  The sweat that drips off my elbows is a result of a gift for me, like confetti.  The personal best I reach is a private celebration between me and me.

I take one hour every other day.  I just claim it and take it. That hour and the lasting trail of grateful gladness that lingers after it make everything else that fills my life feel more…well, mine.

What present will you give yourself today?

Friday, July 15, 2011

Camp Awesome

Jack, my 8-year-old autistic son, has never had intensive therapy. The early intervention therapists missed him the first time I had him evaluated, he didn't get diagnosed until he was almost five, and by then he was in entrenched in a system that said he didn't need therapy to succeed at school.

What the system didn't see, or didn't want to see, however, is that my son does need therapy to succeed in life. Those two things are very different. As soon as I was done fighting for a diagnosis, I put him into speech and occupational therapy and found him a social skills group.

Still, he has never had anything more than weekly one-hour (or less) sessions. I always heard about kids who got many hours of early intervention therapy when they were very young and was envious, regardless of whether that type of therapy or the timing was right for my kid.

The envy would continue when I would see kids at therapeutic private schools (even though I know that my Jack is in the right place now) or in the summer when other parents would sign their kids up for special needs summer camps and I would pack Jack off to the school system's less ideal extended school year program.

This year though, I finally found a way to get Jack into a special needs summer camp. He gets to go for five weeks, four and a half days each week. We managed to get funding that made the prohibitive cost affordable and I finally get to see what it is like to have a child in a classroom created specifically to teach kids like mine. 

It is a revelation.

For the most part I am happy to have my son in a mainstream classroom. We've been very lucky with good teachers and no teasing thus far, plus I know that Jack has to learn how to grow up and live in a mainstream world. I truly believe that his school is the best place for him right now.

But watching him at his camp, which I have termed Camp Awesome, because it is, I can see what it is like when therapists and aides have time to not just cope with my son's behaviors, but to challenge him on them. 

They are pushing him in every sense of the word at Camp Awesome. At home and at school he can find ways to get around what we want him to do. At home, he can manipulate the hell out of me. At school, the teachers have 20 other children to take care of. At Camp Awesome? They are taking none of it.

For example, the carpet at camp has the alphabet on it. Jack likes to sit on the "J." One day another kid sat on that letter. Instead of giving in to Jack's rigidity, they told him he had to sit on a different letter if he wanted to do the next activity. He (eventually...and angrily) did.

Then, the next time the class was going to sit on the carpet, they had an aide sit on the "J." On purpose. I think you can imagine Jack's reaction. Four days of this later, Jack happily sat on the "U."

It may seem small, but it's not. At school they probably would have let him sit on the "J." At home, I definitely would have.

I feel really fortunate to have found this camp with its wonderful staff and its resources to push Jack out of his rigidity at the same time that they are managing to let him have fun.

When Jack goes back to his school this fall, I will feel happy knowing that Jack is getting what he needs. Yet I will be extra grateful that he spent his summer getting the best possible care and I will hope that he can take those skills into class with him.

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, July 14, 2011

Love On Point

In a Jewish wedding ceremony, the rings are placed on the right index finger. As with everything Jewish, we don't really know the reason why, and we can bicker about it all day. Uncertainty is in our genes. We get around this by giving a few possible reasons, then getting something to eat and forgetting about the question.

The rabbi at last weekend's wedding described two reasons for this custom. The first is that moving the ring from one finger to another is a deliberate act. So, the groom places the ring on the bride's index finger and she moves it to her ring finger, signifying her willingness to enter into this marriage. Think of it as the ancient equivalent to "check here to agree to the terms of service." In fact, there seems to be a lot of emphasis in the Jewish wedding ceremony on not getting tricked into marrying someone. The reason for this is (surprise!) up for debate, but often refers to the story of Rachel and Leah.

The other reason we place the ring on the right index finger is that Talmudic rabbis agreed that this finger had the most direct connection to the heart. Clearly the more romantic spin on the custom.

Parents of children with autism understand the significance of the index finger. Pointing, or rather the lack of pointing, is a primary marker of autism in young children. When Moe was first being screened our pediatrician asked if he pointed at things, and we answered "Maybe? Sometimes?" Now that we've watched our typical daughter, Jelly, enthusiastically point at everything since she was at least 9 months old, we know that our "I don't know" should have been an emphatic "no." For her, pointing was a developmental imperative, one she worked on as vehemently as rolling over, crawling, and walking.

Every couple of months, I come across a set of pictures from a party when Moe was about 18 months old. He had just started walking, the only delay I had been concerned about at the time. In the photo, Moe is clearly pointing at the camera. And though I can remember hardly any examples of "shared attention" or other efforts to point out things he was looking at (other than a short time when he would point to body parts, letters, or pictures in books when we asked), I always come back to this picture. It was my "proof" that he was okay.

In some ways, this picture makes me hopeful. If Moe had this instinct to point at one time, it must still be in there. The "it" I'm referring to is not the pointing; rather, "it" is the typical boy I still sometimes long for and imagine, though I will myself not to. Somehow, knowing that Moe was once doing typical things helps me feel like he can get there again. I convince myself I'm not asking him to be something he never was, but just to get back to the way things were.

On the other hand, the fact that I have exactly one picture, one memory, of Moe pointing, is a real indication of how early the signs of Moe's autism were present. Despite the regressive nature of his autism, at least as far as language development, there were many early signs. And this realization tells me how, for lack of a better word, "deep" his autism runs. Though Moe will learn many skills, perhaps even the skill called "how to grow up, get a job, move out and otherwise get along in society," he will always and forever be autistic.

And if Moe's index finger is, as the rabbis say, a direct connection to his heart, what does it mean that he still, at age 4, doesn't point? If Moe doesn't share his experience in this way, doesn't see the point (pun intended), does this mean that he does not share his heart?

Of course there are other ways to share experience and to express love. For one thing, parental love is about giving unconditionally. And if, as we say, the autistic brain is wired just a little differently, then maybe other connections are as well. If Moe's finger isn't directly connected to his heart, I can certainly tell you that it is connected to mine. As my fingers point, sign, squeeze, brush, clean, hold, direct (and re-direct), I share Moe's heart every day.

Besides, I'm pretty sure for Moe, the most direct connection to his heart is his smile. Unfortunately, it's hard to put a ring on that.

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

Wednesday, July 13, 2011

I Will Let Go. I Will Let Go. I Will Let Go. Eventually.

Back in March, I wrote about my struggle with letting my son cross a busy road on the way to school, a situation made somewhat embarrassing by the fact that he's 18 years old. I'm happy to report that he does in fact cross on his own now, in a way that does not require an ambulance for his broken body or my hyperventilating one.

But it never stops, does it? You let your kid have a little freedom, and everyone wants you to back off and give him some more. You can damage a kid by controlling too hard, I get that, really. Here's my problem, though: In every instance of independence, the odds of things going well are hugely higher than the odds of things going badly. But the consequences of things going badly are hugely more negative than the consequences of things going well are positive. How do you work with that?

Case in point: a recent news story about a 17-year-old with intellectual disabilities who was riding his bike around his neighborhood -- just the sort of thing you'd urge a parent to allow to foster freedom -- and ran afoul of a police officer -- who had been told about the boy's disabilities, the way you'd do when you were building a safety net. The officer decided the kid was being disrespectful and Tasered, pepper-sprayed, beat, and arrested him. A judge let him go, but honestly, I'm not sure you're ever "free" of an experience like that.

That's exactly the kind of thing I imagine when I'm asked to let go and trust, you see. That, and many more scenarios for which I could probably find news stories. Are the positive benefits of riding around the neighborhood worth something so horrible? Are the positive benefits of, say, getting a part-time job, as has been proposed for my son, worth what would happen if he melts down or gets the out-of-control sillies or really just talks to his imaginary friends in front of customers? Something good can slide into something world-ending so quickly. You don't need to read much about young adults with Fetal Alcohol Spectrum Disorder to get the picture.

This sounds un-hopeful, and that's not what this blog is about. And in fact, I'm very hopeful about my boy, more hopeful than ever. I do believe, with all my heart, that he will be independent one day, or as independent as any son of an Italian family in New Jersey has license to become. He will get there, and so will I. All I'm wondering is, what's the rush?


Terri Mauro blogs at Parenting Special Needs and Parenting Isn't Pretty. She has two terrific kids, a 21-year-old with learning and language disabilities and an 18-year-old with FASD, both adopted from Russia in 1994.

Tuesday, July 12, 2011

Spotlight on CMV

When I was in my first trimester of pregnancy with Emma I contracted a virus that is little more than a cold and uneventful unless, of course, you are pregnant.  The virus was cytomegalovirus, or CMV, and it is the most common cause of birth defects and childhood disabilities in the Unites States and I had never heard of it.  Not only had I never heard of it, but also it seemed like almost everyone I know had never heard of it.  I am wondering right now how many people reading this has ever heard of CMV.  

The glaring lack of knowledge about such a devastating virus led to a grassroot effort to increase awareness and prevention of CMV (this started long before I was even pregnant with Emma, but I had not heard about it yet).  It was initiated by families effected by CMV who work diligently to spread the message of CMV and prevention to everyone we know.  Stop CMV, the CMV Action Network, has also worked tirelessly to help promote the message of CMV awareness and prevention within the medical community and in June the message of CMV was launched into more of a national spotlight with Senate Resolution #215.

On June 23, 2011 the U.S. Senate unanimously passed Senate Resolution #215 that:


  1. Designated the month of June 2011 as National Cytomegalovirus Awareness Month in order to raise awareness of the dangers of CMV and reduce the occurrence of congenital CMV infedtion; and
  2. Recommends that more effort be taken to counsel women of childbearing age of the effect this virus can have on their children.


While there is a lot of work needed to make sure every woman of childbearing age knows about CMV and prevention, this is a great step towards that goal.  I am so proud of the people who worked to make this happen.  I am truly hopeful for a day when families are so aware of CMV and prevention that it is no longer a significant cause of birth defects and disabilities.  I am truly hopeful!

Team Spirit

My 5-year-old son Ethan is both autistic and deaf. He has the power duo of communication challenges! He was born deaf (due to a CMV exposure in utero) and has been hearing with cochlear implants since the age of 16 months. He became a very good cochlear implant user and loved his hearing. In spite of his significant apraxia, he was starting to sing along with The Wiggles.

Then one of his implants stopped working. The process of its failure seemed to span weeks, maybe months. We’ll never know exactly what happened since he wasn’t able to verbally communicate his experience to us. We just had to watch him slowly and surely reject wearing it altogether. Then he began to reject wearing the cochlear implant on his other ear; apparently he generalized the bad experience from the right side over to the left. We spent 10 months of the past year with him in total silence. Tests showed that the left Ci was in perfect working condition, so his rejection was totally psychological, which is completely understandable! Unfortunately, he lacked the reasoning to be able to understand what had happened to him and as a result developed an intense fear of going to see the audiologist.

Having a young deaf child is actually pretty challenging, but when you add an autism diagnosis to the situation, well let’s just say it’s a wonder that I’m not heavily sedated in a padded room. I spend the majority of my time parenting him solo, so believe me I’m thankful for my coping skills! What a gift. But I digress.

Each person that Ethan works with at our children’s hospital is just incredible individually; they’re all very compassionate, talented, and patient. Lately his audiologist has been thinking creatively about how to make progress with Ethan, so he suggested that rather than bring Ethan to his office, he would travel to see Ethan in one of his speech appointments. Since Ethan has a lot of love and trust for his SLP, we figured this seemed like a decent idea, definitely worth a shot. It has worked like a charm! With the different environment and the addition of another adult to help engage him and keep him calm, we’ve made huge strides! He is now wearing his left Ci and hearing again. After nearly one year of silence, he is starting to relearn how to vocalize speech sounds correctly.

All of this progress is because we have professionals who are willing to try new approaches and who bring incredible levels of patience and persistence to the table. When the people working with your child actually communicate and recognize that ultimately, they have the same goals, a lot of good can come from it. In our case, it has given our son the chance to hear again. 

Sunday, July 10, 2011

Bits and Pieces

I have always posted fairly cohesive and (hopefully) well thought out essays here at HP. But this month, once again the 10th of the month had managed to sneak up on me and is now inches away from biting me on the butt.

The evening of the 9th found me staring at the HP folder on my computer and finding 3 partially written posts and a few good ideas hastily sketched out, but nothing near ready to go up.

There comes a time in every bloggers life when we have to make the choice between being good to our blog and being good to our families. I saw that I could stay up all night or in all day on Sunday and write an amazing post for Hopeful Parents. Or I could get enough sleep, and take my kids off on a fun adventure on a beautiful summer Sunday. (Sunny, 80’s, low humidity – PERFECT!)

So you know what I’m going to choose.

But I won’t go back on my commitment to HP, this being my 12th post here, the completion of my first year’s cycle. So what I will be doing today is a bit of a brain dump. Bestowing upon you some of the bits and pieces of what’s floating around in my brain about autism and my son Jacob these days…


I know I made it sound like a no-brainer that I would chose a day out with my family over a day enslaved to the computer churning out a post. But really? It was touch and go there for a while. Because while I love my son Jacob to pieces, he is really difficult to be with these days.

I thought life would get easier and better once he got more involved in the world, more communicative. And in many ways, it truly has. But also? I forgot how utterly exhausting 3 to 4 year-olds are. And that’s where Jake is at developmentally in many ways.

He makes the same requests, and asks the same questions over and over and over again. He doesn’t take no for an answer. He doesn’t even take yes for an answer and, when excited, will ask over and over again for permission to do something, even after I have already given my assent.

Also, he wants me to play with him, engage with him, just about all the time. Which is a wonderful, wonderful thing. But also? Exhausting.

What was that old saying? Be careful what you wish for… (Not that I would ever wish for Jake to go back to his old, spacey, lost-in-self ways)


The thing is? Jake’s been talking nonstop to me & his brother for some time, in many ways we’re used to it. But now he’s taken to talking to everyone else too.

And I mean everyone. Strangers & friends alike. People on the street. Jake has decided he has to talk to pretty much everyone he sees.

And? He’s BOSSY.

"Hello, girl, sit over THERE!"

“Excuse me, man, man? Do you like monkeys? Be a monkey!”

So when we go out I really have to be right at his elbow, glued to his side again. Or else he will get himself in a heap of trouble. Because while some people think he’s cute….


Another part of the exhausting? Jake is getting very determined about his desires. Like yesterday when Jacob insisted on haircuts. We had other plans, but he woke up in the morning pulling at his hair and yelling “I HATE this, mommy!” I think it looks adorable shaggy and curly, but Jacob? Clearly, not so much so.

He’s been mentioning a haircut for about a week, so I knew it had to be right away. One time when I ignored his need to be shorn, he tried to do the job himself. Bad idea.

So the boys got haircuts yesterday.


I am deeply peeved that I still haven’t found a real friend for Jake yet. It’s a conflagration of so many variables, and they all add up to: failure. 

As connected as I am to the autism/SN parenting online world, and in spite of the thousands of SN families here in this giant city we call home? I actually know very few SN families here in NYC.

The families I met when the kids were young? The autistic kids are mostly sensory avoiders, and have really different needs than Jake, can't do the things he loves.

Others started out seemingly the same, and are now very mild, now mainstreamed. It’s not a good fit. I’m truly happy for those families, but sad for us and our inability to hang out.

The kids from his school are scattered among the 5 boros, none close to us.

A million excuses. But still, I need to try harder. Jake NEEDS a friend.


Also, this week, I was deeply offended by that article about “permissive parenting” written by an uber-judgmental & misguided man who believes all children’s less than perfect behavior can be completely controlled solely by a parental look. In that article he lets us know that any of us who can’t do this? Are terrible parents.

Because of course all kids are the same and this jerk has never heard of Autism/PDD-NOS/Asberger's Syndrome/OCD/ADHD/Sensory Integration Disorder/Post Traumatic Stress Disorder/Bi-Polar Disorder/Anxiety Disorder/Language Processing Disorder/Tourette's Syndrome. Because all kids are the same, right?

I had a lot of snarkier things to say about this that I typed and deleted. Trying to keep things positive.


OK, brain is nearly empty, time to take the kids to the park (I was considering the beach but I am not yet completely over a nasty respiratory infection and don’t think I could quite manage them safely enough at the beach, with the waves and all. Next week, maybe)


We went to the park spent all day. The kids had a great time. Came home happy & exhausted. Now they are in bed, asleep, and I get to clean up & paste up this post, finally.

Jacob did, indeed, try to talk to EVERYONE. Wonderful and exceedingly difficult, all at the same time.

Autism.  Always an adventure. 


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.