Thursday, March 31, 2011

What Does the Word Autism Mean to You?

With statistics like 1 in 70 boys diagnosed with autism, if you don’t have a child with an autism diagnosis you likely know someone who does and have created a meaning for the word in your mind.

I invite you to sit for a moment and open up your awareness to what words, what feelings, what images come up for you when you think of the word autism. 

Are they words and images that bring up feelings associated with fear, pain, suffering, anger, or guilt?

Have you noticed that as a society, we’ve been programmed to respond in fear and despair when a child is diagnosed with autism?  I’m not saying those feelings are invalid in any way or that our children are not suffering.   What I want you to consider is how you respond to the meaning behind a word.

With the start of Autism Awareness Month tomorrow I want to bring more awareness to the way we as a society think about autism and the feelings associated with the word.  I want to invite more acceptance and understanding for our children and families living with the diagnosis every day. 

When you open up to see and hear the unique ways children with autism express themselves, you can begin to see how accurately they respond to their environment.  They are not clouded by social conditioning and conformity but rather live according to what is alive in them and what feels good or doesn’t feel good in that moment.  They teach us to be present.

If you do associate autism with feelings that create fear, stress and anxiety, I invite you to consider finding one example of how autism has changed you for the better.  For me, I’ve learned to live more in the present moment and see every behavior from my son as a form of communication.

I will continue to find ways to help his healing journey and ease his life in the body he’s been given and I will do it to the best of my ability with peace, love and acceptance for everything that he is.

Here's to a month filled with more awareness AND acceptance.


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. 

Tuesday, March 29, 2011

The Typical Brother

Sometimes I get sucked into worrying about the typical sib in our family and yes, there are concerns, but today I call BS on my unnecessary fretting about him.

He has the benefit of being adored by his older sister. He's never been a "pain" in her neck. She has loved him since the day he was born and has never teased him or been jealous of him or put him down in any way. Recently he broke out into his Michael Jackson moves at a social dance. A crowd gathered round, admiring his dancing, and he was in the zone. She'd been encouraging him for just such a moment for years.

"Seth, you should enter a talent contest!" she's said to him many times when he's practiced "the moves" at home.

If I had attempted such behavior as a kid, my sibs would have ripped me to shreds with teasing. I'd never have been so brave. His confidence is largely because of her.

He gets to be homeschooled, because we're homeschooling his sister anyway, and he is thriving in this environment. He has so much freedom to be creative and to play. He never would have had the opportunity to learn at home if not for his sister's needing to be here.

I can look at it like he gets "dragged" to all her therapies, or I can admit we have the best one-on-ones while she is in there working. We've read so many books together and taken many a walk this way. He even sometimes gets to be the "typical" volunteer, benefiting from all kinds of enrichment.

His life is different having a sister on the autism spectrum, and different comes with certain challenges, but it isn't worse. It's different. It's full of opportunities. It's being open to all kinds of people, and giving people the benefit of the doubt. It's being appreciated for who he is, it's loving and being loved deeply.

It's going to the Rock & Roll Hall of Fame on a Friday while everyone else is at school. It's learning two-on-one with a science tutor at your kitchen table. It's having your Dad beam with pride as he teaches you math. It's writing stories with your mom and your sister. It's oil painting. It's dancing your heart out and not caring who sees.

It's rich.

And yes, it's not about him when sometimes it should be. But the good? It really deserves to be celebrated.



Monday, March 28, 2011

I Wasn’t Surprised

this month, I share another poem my wife wrote:  


I Wasn’t Surprised

         that it would be me,
out of all the other moms I knew,
to come face to face with the world of
Autism, seizures and sensory disorders.
The journey has led me
down a unique path,
that has forever altered my views
of children, development, parenthood,
the environment, our world
and the definition of family.
Life has never let me
live in the mainstream.
Why then should I be surprised
that my family may not be so typical either?
I don’t know that woman
who dreamed of the perfect family.
But, I know well,
the woman who persevered,
who dove into research, and faith,
who tested the core of a marriage.
I know the woman
who has seen death,
who has seen life,
who has seen a miracle in her boy,
the woman whose heart breaks at every phone call
from a mom in fear
grieving a new diagnosis,
who can finally say
she has seen the other side,
who champions early intervention
and can stand for hope.
I know that woman well,
and will trust her always.



Jennie Linthorst is an expressive writing coach and the founder of LifeSPEAKS Poetry Therapy. She works privately with parents and caregivers of children with special needs helping them tell their stories and heal through reading and writing poetry and personal essays. Jennie coaches clients all across the country and around the world via phone, Skype, e-mail, in addition to in person meetings.  Jennie tells her own story of mothering a special needs child in her book of poems, “A Mother’s Journey”.  Her family’s story is captured in the award-winning documentary film, “Autistic-Like: Graham’s Story”.

More information is available at and .

Gladiator Games and IEP's

I enter the coliseum, ill prepared for my first battle as Gladiator and Protector of a son diagnosed with special needs. 

The coliseum is a conference room, and in it, a round table where the battle over my son’s IEP will take place. I have been given no weapons, no rules of engagement. Several teachers march assuredly into the conference room. I am drastically outnumbered. The challengers have come prepared for battle. In their eyes, a calmness, an inner confidence in their combat abilities derived from many years of fighting skillfully and winning victoriously together. Armed with progress reports and therapist recommendations, they are fearsome opponents. Instinctively, within seconds, they size me up and determine my worth as a potential adversary.

I am immediately intimidated. 

I am seated at a table alone, across from me, my opponent, the school. Their objective: to spend as FEW precious dollars as possible in providing my son with an education that MEETS expectations. My objective: to get them to spend as MANY dollars as possible in providing my son with an education that EXCEEDS expectations. The difference between meets and exceeds, and few versus many, is significant and always results in a good fight.

During my first IEP, my inexperience in this foreign arena, causes me to sustain mortal wounds. I am carried out of the conference room by stretcher, bleeding and bewildered. Much like Gladiators in Roman times, I learn quickly how to engage skillfully in debate or suffer the dire consequences of another lost and frustrating year at public school for my struggling child.

The second time into the coliseum, I understand and respect the fierceness of my adversary. Briefed on my opponent's few weaknesses by fellow Gladiators, I develop a false sense of confidence. I enter the arena too boldly, anxious to avoid another exit by stretcher, I swiftly and viciously lop off the head of my unsuspecting foe.

I feel pleased at first, of my swift victory and unscathed body. But it isn’t long before I realize, that my fierce opponent, is also the sole guardian, during school hours, of my precious child. I quickly grasp the important concept that a spurned and bitter teacher is not an ideal caretaker for my child. I made a big mistake.

A few battles more and I begin to find my pace. I discover if I temper my anxiousness with the ability to calmly listen, and adeptly explain, I begin to earn the respect of my opponent. This new-found ability usually helps to develop a more cooperative exchange with much better end results.

As the mother of two children diagnosed with special needs, my experience participating in the Gladiator Games is extensive. I have many battle scars to prove it. The greatest difficulty I face now is simply entering the arena void of emotion, since a brilliant performance in the ring directly depends upon it.  Like a true Gladiator, I need to act calmly, to think strategically, to gather any and all resources and to fight with courage, honor and dignity.

A true victory in the ring is only achieved when I am able to motivate my IEP team to see my son for who he truly is, a unique and valuable human being. A child who is worthy of their empathy, their hard work, their commitment to doing all that is necessary to see him succeed.  I have yelled, screamed, begged, and pleaded with both teachers and administrators alike in an effort to get them to see my child as if he was their own. 

The night before an IEP is always a sleepless one. The day after, it’s battle fatigue. As a parent of a child with special needs it is just another sweaty and grueling role I play to ensure the quality of life for my child. I am a fighter, a warrior, an advocate, a Gladiator.

And so, let the Games begin.

 Please come visit our blog at:  

Sunday, March 27, 2011

Seeking Calm

I slipped out of the science fair at Oscar and Ruby’s school the other night and hesitantly walked across the street to the Buddhist monastery that sits on the opposite corner.  The sounds of children playing on the blacktop in a brief moment of respite from the unrelenting rain followed me up the steps, fading only slightly as the monastery door closed softly behind me.  I slipped off my rain-soaked silver flats and walked barefoot into the crowded meditation hall.  Most of the chairs in the back were filled with blanket-wrapped figures sitting erect and gazing calmly toward the front of the temple. Some were already deep into their breathing, eyes closed, face muscles relaxed. A few cushions remained on the floor at the front of the hall but I opted for a more inconspicuous pew up in the balcony and settled onto a round brown cushion for the forty-minute sit. I straightened my spine, relaxed my shoulders, and let my eyelids close. I focused on my breathing, following my breath in through my nostrils, feeling it fill my chest. But long before I got to exhale, thought after thought popped into my head. I returned to my breath and tried again. And again.

This was my first experience with meditation.

The most recent bout of anxiety that led me to this meditation hall started in Hawaii last month.  It crashed through the soothing sounds of breaking waves and trade wind breezes and woke me in the wee hours with jittery legs and diarrhea.  It did not subside when we returned home to California.  It did not subside after our mediation meeting with the school district.  It only worsened when the earthquake and tsunami struck Japan and increased again when speculation about radiation possibly reaching the west coast hit the blogs of trusted medical professionals.  And when I noticed the black crumbly debris covering our bush after last week’s epic hailstorm I feared it was tainted with toxic fibers from our dilapidated asbestos-shingled roof.  And then I really panicked. 

I know my reaction to all of these events was excessive, unwarranted, crazy even, but there was nothing I could do to stop the circling thoughts and the early morning retching.  There just seem to be times, I’m realizing, when I am unable to ward off the fears that fuel my anxiety.

I am reminded in these vulnerable periods of a presentation slide I’ve seen at Prader-Willi conferences. Dr. Gourash and Dr. Forster of the Pittsburgh Partnership talk about how people with Prader-Willi syndrome lack a sufficient “environmental buffer” to cope with daily life stresses and this leads to increased anxiety and behavioral outbursts. The slide shows a typical person’s environmental buffer as a wide ring around a smiley face.  Lightning bolts of stress are hitting, but not permeating, the ring, and the face in the middle is still smiling. In the drawing representing a person with PWS, the lightning bolts easily permeate the narrow environmental buffer and the figure in the middle is frowning in distress. 

I talk about this slide all the time with people who work with Oscar. We help Oscar compensate for his narrow environmental buffer by reducing the stressors in his life as much as possible.  We follow a consistent food routine so he can count on meals at certain times and has no hope of getting any more food. We don’t talk about events (trips, grandparent visits, blood draws) too far in advance because the anticipatory excitement or dread, it doesn’t matter which, is highly stressful.  We rarely give details about anything, just in case things change and expectations cannot be met.  So many of Oscar’s questions are fielded with the same familiar response: “Mommy and Daddy have a ‘plan’. No need to worry about that O-man.”  When Oscar is particularly stress-sensitive we spend a lot of time in pre-emptive stress reduction mode. 

But I’m a supposedly typical person with a supposedly wider environmental buffer.  Somehow, though, those lightning bolts are getting in. I used to have far more internal resources to manage fears and cope with stress but right now those resources are low.  I think years and years of parenting and advocating for a child with a disability has worn holes in my protective band.  I think always anticipating and diffusing stressors for Oscar has alerted me to stress in new ways.  I think the fear of even more medical circumstances entering our daily lives has me on the lookout for any hint of disaster I might be able to fend off.  And of course I’m no longer naïve to the ways in which life can change in an instant. 

Whatever the cause of my heightened anxiety, I do know I don’t want to live this way.  I can’t live this way. I’m off anti-depressants now but I do take a tiny bit of anti-anxiety medication before bed. I’ve returned to yoga. And now I'm trying meditation.  But as I left the crowded monastery after the sit and the dharma talk, I was doubtful that I would return.  I couldn’t focus on my breathing for more than two breaths. The hall was crowded. My bare feet, chilled from the rain when I arrived, were now numb. My throat tickled from the incense. And the whole event took two precious hours I thought I couldn’t spare.

But when I arrived home my head was clearer. I was still aware of the piles of paperwork, unanswered emails, upcoming medical appointments, and stressful education decisions ahead, but instead of becoming anxious I was focused, and calm.


I sat for a moment and breathed in that precious calm and decided that perhaps I will return to the meditation group next week after all. This time I’ll bring socks.


Mary blogs about raising Oscar, who has Prader-Willi syndrome, and two other awesome kids over at Finding Joy in Simple Things.


Not Ever Good Enough

My son sits in the chair, slumped over, his head in his hands. When he lifts his head and looks at me there are tears in his eyes that he is trying to hold back.

He starts to speak "I just . . . " his voice waivers. His mouth closes and he seems to be searching for the words. He lifts his shoulders and shrugs, passing his hand through his hair. His mouth opens as he tries again "I can't go!" he shouts. At first I try to pass over his words, to convince him that he will be alright once he gets there. Transitions are often the hardest for him.  If I can just get him out the door, I think, then I can finally get my work done. But before I can speak he looks at me, this time straight in the eyes, a rare occurrence for my oldest son.

"Please Mom" he begs, actually putting his hands together in a pleading motion."Please don't make me go. I can't do it. I'm exhausted. It's exhausting trying to be who they want me to be!"

His words, his tears, the tone of his voice hit me hard. This is not a ploy, this is not an issue that will pass in a few moments. My son who struggles to relay even the simplest of information has just made a soulful and heartbreaking declaration.

I go to him and kneel before him. I take him in my arms and he falls onto my lap from the chair. As he sobs against me, trying to curl his five foot frame into my lap, I hear him whisper over and over "I'm just not ever good enough"

I cannot, I will not, ignore his words. I will honour his voice. He has found the words to explain to me and I will listen.


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



Saturday, March 26, 2011

Staring - How to see special needs children

Recently, I wrote the article below for our local newspaper, and thought it would spark some interesting conversation on Hopeful Parents. Ok, I'm totally reusing this because I was on a hiatus from caregiving but that's next month's story. Enjoy! :)


For many people, encountering a child with a disability can cause a bit of uneasiness.


Should I stare? Should I not stare? Should I keep my child from staring? Should I pull my child away? Should I ask questions or not ask questions.? Is it any of my business?


Medically fragile children are a part of mainstream society more than ever before.


As the father of two children with cerebral palsy, I’m a very active person along with my family. We go on walks at parks or at the mall and to many other family destinations.


Sadly, people in public do not know how to interact with my children. I feel they are missing out on an opportunity to not only learn about my kids but also to possibly learn something about themselves.


Everyone stares.


While at the mall, I once witnessed a person staring at my child. Perhaps it was her wheelchair, her trach tube protruding from her neck or her slightly crooked smile from her cleft lip, I‘m uncertain as to why.


As we locked gazes, I could see the recognition of my child’s disability, then the awkward moment of what to do next, as we silently passed one another.


Staring is a normal response when we see anyone who is a deviant from the norm. I understand staring is part of the deal when you try to give your child every opportunity to be fully included in society


Even I stare. My stare is out of amazement for the family supporting that child because I know all too well what it‘s like.


Although what I’m trying to communicate is that I do not have fear or guilt associated with my stare; I try not to offer a smile rooted in sympathy either.


Instead, I focus on the child and try to see them as a person first. Then I wonder about their age, their name and what they do for fun or if they are like my children.


Sometimes my curiosity leads me to ask questions or simply give a nod of acknowledgement to the child and/or family.


Advice on staring


My stare is still wrong, especially when I do not follow it with direct communication to the child and family.


If I could give any piece of advice it wouldn’t be ‘don’t stare,’ but rather follow-up your stare with a question, an opportunity to learn.


But, be sensitive because there are some families who just want to blend in so you may not always get the answer you expect (at least you tried to help the family feel less isolated).


If you are too fearful of asking yourself then learn from children. Children are our best examples.


Many do not have preconceived notions and are naturally lead by their curiosity.


I’ve been filled with happiness countless times when children ask us what’s wrong with our daughters. I’m just like many other parents I know. I’d never miss a chance to talk about my kids.


It creates an opportunity to understand how much all kids are alike. Whether it’s pointing out her black Converse All-Stars or noticing the sparkling pink hearts on her t-short, kids almost always get it right.


Staring is ok, but it’s especially ok when followed by asking a few simple questions. Ask their names. Ask their favorite color or movie. Just ask.


Questions weren’t always easy 


Being on the receiving end of questions from strangers wasn’t always as easy as it is now.


In the early stages, the realization of being a parent of a special needs child created feelings of isolation. Not only were all of my dreams for my children short-changed, but I didn’t want to interact with people staring at me and my family.


Eventually though, answering questions and explaining my daughter’s condition gave me comfort.

Staring, on the other hand, became a normal part of our lives so I learned to embrace it.


For example, my wife and I chose to give our oldest with cerebral palsy daughter a hot pink cast after her first surgery (eventually topping that with a rainbow-stripped cast). It served as a conversation starter that helped to avoid any awkwardness and as an opportunity to educate curious observers.


Looking back, there may have been people who were more likely to talk to us because maybe they thought her wheelchair was only temporary until she recovered from her surgery. Maybe they would not have asked us what was wrong with her had she not had the pink or rainbow casts.

Now, that same daughter also has a trach (breathing tube), and we’re looking for ways to add ‘flare’ to the ties that hold it in place. She is just like any eight-year-old girl who loves pink, purple, and glitz and glam.


What I saw is that we were helping people move beyond staring and their feelings of embarrassment because we were drawing their attention on purpose. It helped them see our children as they are, first as human beings.


While I’m not sure if there is truly one right or wrong way to interact with families of special needs children or disabilities, I like “the stare and ask rule.” It provides the potential to change peoples’ perceptions one stare and one question at a time.


My hope is that world will start seeing my children not by their differences but as I do, by their potential and similarities to other children.


Tim Gort, writes about his life with two special needs daughters at


Friday, March 25, 2011

Don't be afraid to talk to us.

Ever since I can remember, the day my daughter Quinn was diagnosed with a kidney disease (recessive polycystic kidney disease) friends and family surrounded us with care and concern. We were bombarded with calls, emails, cards and letters full of love expressing how sorry they were that the Quinn was diagnosed and then three short months later the same love came in when Gage was diagnosed.

Every so often I look back and read some of the notes from those early days. I found and continue to find comfort in every one of the sentiments that people have shared with us. The overriding thing I see in all of them is the love they have for our family or in some cases, for the people that didn't know us personally, I find the love they have in their faith; hoping to share some with us when we weren't sure we had enough.

After the flood of support during that time and other particularly stressful times of a new diagnosis or symptoms or treatments it's interesting to see how friends and family deal with us. You know, when the shock settles down a bit and we get into a new routine.  When we're not in crisis, they don't particularly like to bring up or inquire about how things are going. So I will. I know it makes some people uncomfortable when we talk about our daily life with a progressive disease but for some of us parents, we weave it into our regular conversations because it is a significant part of who we are as a family.

But we can feel it from them when they don't want us to talk about it. We know you would rather not; maybe you're thinking if you don't talk about it that we will get a reprieve from the daily grind in the arena of raising sick kids.

But you should know. It never leaves us.

There isn't a day that goes by that we don't compare ourselves to other families that have healthy children and wonder what that is like. We long for the carefree days before we heard the words "polycystic kidney" or the various other conditions the kids happen to have. There isn't a day that goes by that we don't wonder how the kid's disease will impact their lives as they make their way into adulthood. There are very few days that we don't feel the impact financially. There is always an underlying current of worry if they will live to graduate high school and college and if we'll see them marry and have children. I don't dwell on their mortality but I do think about it; because they will have to have one or more kidney transplants to survive an average lifespan.

A few moms I've been conversing with asked me about this; if I noticed friends and family that can't deal with us and don't want to acknowledge it. Even when our life seems stable, sometimes we just need to talk about our life with special needs kids. Sometimes we don't need a long discussion, but we need for you to acknowledge it. It's okay if you don't know what to say. It is enough for you to say: "I don't know what to say, but I love you and I wish you weren't going through this."

Please don't be scared to talk to me about the kids' disease, or their other conditions that impact their dailly living. Trust me, whatever you ask or say won't make me think about their challenges more than I already do.

And by the way, if you are one of the friends or family that supports a family of kids medical or mental challenges, thank you. You have no idea how important that is to a special needs mom like me.

Julia blogs at Kidneys and Eyes, writes for Aiming Low and began a site for families impacted by speical needs called Support for Special Needs.


Wednesday, March 23, 2011


It is for us to pray not for tasks equal to our powers, but for powers equal to our tasks, to go forward with a great desire forever beating at the door of our hearts as we travel toward our distant goal.
Helen Keller

So many times when I have talked to other parents of children with disabilities, I see complete and utter exhaustion in their eyes. The sparkle that indicated their willingness to do battle for their child was barely flickering anymore. There was also a sadness there, and the tendency to lower their head and look toward the ground when discussing what was going on with their child. They had been worn down and worn out. They didn’t love their children any less or stop believing in them, but they were tired, very, very tired. When I looked in the mirror this morning, really looked into my own eyes, I saw those same things.

For a parent of a child with a disability (or multiple children, in my case), every day brings battles. Carefree days of just enjoying your family, with no expectations, no learning activities, no concerns over reinforcing activities of daily living, are few and far between. Every waking minute of every day, and usually some of the so-called sleep minutes of the day are spent strategizing. The questions are many and the answers are few.

  • How am I going to convince the school system that my child is not progressing and they need to do something different?
  • How many more times am I going to have to try and explain exactly how my child’s disabilities affect their daily life?
  • How many more insurance battles will I have to fight for just the most basic of needs?
  • How many more times will I have to explain to a doctor’s office staff why I need a phone call from the doctor immediately?
  • How many more times will I have to explain to strangers why my child looks differently and acts differently? How many more times will I have to smile and act like it doesn’t bother me when a stranger just stares?
  • How many more therapists will I have to ‘educate’ on the best way to approach working with my child?
  • Etc., Etc., Etc.

I’m also tired of hearing what a wonderful person I must be for wanting children with disabilities, what an ‘angel’ I am, blah, blah blah. I am NOT special. I am a mother who just wants to enjoy life with her children. I am a mother who wants her children to have those things that are their rights to have, and a few of those things they want to have. I want what is described by many as a ‘normal’ life. I want to play and rest and enjoy, not stress, obsess and fight. I am so tired of all the battles.

I won’t give up – ever. I will fight for my children, and for other children with disabilities, until the last breath is gone from my body. But my body, my heart, my mind and my soul are so very, very tired. My children deserve better and so do I.

Tuesday, March 22, 2011

In Three Days

            We all have people we have turned to for support and information in the days since our lives were changed by the onset of a diagnosis.  Some of those people we meet.  Some come in and out of our lives in various ways.  Some stay and are stalwarts on our journey.  Some make an impression without ever physically being present. 

             How many of us have had a strong reaction to a book we have read about our child’s special need?  And I’m not referring to those early days when we pore over countless scraps of info to learn more about the world we have just entered.  I mean a work that has somehow affected you on a deeper level.  There have been a few such books that have done that for me…and I get to meet the author of one of them in 3 days.

            In the world of Autism, there is a plethora of books, seminars, conferences, diets, therapies, theories and other such items for parents to wade through.  Often, the ones that offer a personal point of view that I can relate to the best since it offers a connection of a kind.  One that really resonated with me was written by the woman I will have the pleasure of listening to this Friday.

            A Thorn in My Pocket by Eustacia Cutler was a book I happened upon when my oldest child was still in elementary school and I was trying to juggle his needs with the hefty medical needs of his baby brother.  It hit me at a time when I needed the affirmation that there is no manual on my child and if there is, I am the one writing it.  I actually read it in chunks while C.—my oldest—was making his first foray into organized sports.  As a means of having some form of respite from the medical issues of my youngest—B.—I would alternate attending practice with C. while Dad stayed home with the little guy.  It wasn’t perfect; but it did give me a chance to snatch some reading time despite the din of the participants. 

          I remember reading parts of it trying to picture myself in those situations.  Other parts, well…despite the difference in times hit a bit too close to home.  I respected Eustacia’s decision to follow her own instincts over many medical “suggestions.”  If you are unfamiliar with the book, you must understand that she was writing about a time before Autism really had a name.  And if you don’t already know who Eustacia Cutler is…she is the mother of Temple Grandin.  And someone I admire. 

          The book isn’t a fairy tale, it doesn’t provide magical answers, it doesn’t paint a rosy or perfect picture, and it caused me to make sure I always had a tissue handy or sat near the door when I was reading it at C.’s practices.  It is said that we stand tall because we all stand on the shoulders of giants; those who came before us and helped paved the way.  As difficult as it is some days to continue the good fight for what we believe is appropriate for our children…it is easier than it was for those who preceded us.  I hope Eustacia Cutler doesn’t mind my weight as I stand on hers.

          I, like others, have second-guessed myself since becoming a parent.  That doubt and guilt increases exponentially after a diagnosis.  All any of us can do is pursue the path we feel is correct for our child and persevere.  The path may change, it may twist and turn…but that is the nature of our journey.  I have been criticized by so many people along the way that it is easier to keep track of those who think I am doing the best I can.  (It’s a smaller number and far easier to remember.)  Despite those “opinions,” I have continued down the path I have paved.  C. is now beginning to navigate with me at times, or change the route abruptly.  However, it is still the journey we—as a family—are making.  The same can be said now for B.’s path which closely resembles the old roads I remember from my Mom’s hometown in Ireland…a short straightaway in between roundabouts.  We seem to go in circles more than moving forward.

          And I guess that’s why the book meant so much to me.  My reading of it was she had to trust herself and do what she felt was best—or most appropriate at the time.  It offered me a type of validation for sticking to my convictions and holding true to the vision I have for my boys.  And it also reminded me that it is ok to admit that the road isn’t always smooth.  There are potholes and rough, bumpy spots along the way.  It’s ok to admit that.  I really hadn’t come across that before. 

          So, I am looking forward to meeting an icon for me in 3 short days.  Someone who made a difference for me by her willingness to share her story and that of her family.  And her story has inspired me to share mine with others and to honestly admit—sometimes there is a thorn in my pocket too.  Thanks, Eustacia…can’t wait to hear more.

Monday, March 21, 2011

Mothers and Fathers from Hell and Heaven

I've been writing monthly at Hopeful Parents since the website first started, but for the past two months, the 21st has come and gone and -- well -- I've forgotten to come. It's early evening here on the west coast and probably fairly late into the evening for most of the readers who come here, but I'm not going to miss my day.

I have a project that I'm working on that involves all of you. A while back, a video went the viral rounds on YouTube. It's called Reflections of Parenting and along with some moving music, shows a series of mothers holding up simple signs with words of parenting advice, words that they wish they had heard or known before they became mothers for the first time. The video is moving in its simplicity and I imagine that nearly all parents can identify with many of the sentiments, as well as the weary smiles and straight-forward advice.

My idea is to produce something similar to this but for those of us who parent children and adults with special needs. I think such a video would be, not only supportive and moving to our community but inspirational to nearly everyone. I hope you'll be honest -- if it's not something particularly cheerful, if it's something downright morbid, if it's black-humored, that's all right. In fact, it will make the video richer. 

This is what I want you to do. Please send send a photo of yourself holding a poster on which you've answered the following question:

What would I say to the parent I was the day before my child was diagnosed with his or her disorder or the day before I knew?

Please send your photos to my email: elsophie AT gmail DOT com.

I can't wait to hear from you all!


When she isn't missing her deadline to write here on the 21st of each month, Elizabeth posts at a moon, worn as if it had been a shell.

One Year

Carter has been at his private school for kids with special needs for a year now.

One year without threats to send my husband and me to truancy court in spite of letters from multiple doctors documenting the medical causes of those absences. One year during which Carter's teachers have called us every time he has become excessively upset, aggressive, or ill during school hours. One year of adequate supervision so that Carter doesn't become the target of bullies on the playground or in the lunchroom. One year of sending my son to a school where people care about him.

It's been remarkable, to see what Carter can do when he knows he's safe. I'm still stunned when, at the end of a school day, his teachers say things to me like, "He's been having a hard time the past few days. Is there anything we can do to help him get to feeling better?" There is no scolding; no shaming; no tsk tsk tsking. Just people who care about my kid enough to get to know him and work with his issues instead of against them.

Not that I blame the teachers for our terrible experience at the public school. On the contrary; all but two of the teachers we worked with really wanted to provide the education that Carter needed, but they didn't have the space or time they needed to help him. In Carter's class at the private school, there are twelve kids, two teachers, and an educational assistant. If any of the kids falls to pieces, an adult is available to help. No one has ever hollered at Carter (I heard it from the hall twice when he was at the public school), sobbing and near-hysterical, "Stop it right this minute!" 

No one points out to us anymore that Carter is not working at grade level. I always hated that, the charts and graphs that showed Carter gaining a few months of educational progress per year. He's still far, far behind his age group, but that's not going to change so I don't see any real purpose in focusing on it beyond what the law requires. Carter's current teachers concentrate on the gains he's making, comparing him only to himself across time. 

For all my celebration about being able (because of the generosity of my parents) to give my child the best possible education, I also have a broken heart for the kids who don't have the same thing. Several times in recent weeks, as education budget cuts have filled the news, my husband has insisted that I turn off the TV, shut down the computer, and put away my mobile device. "I know you're not playing solitaire on that thing because you're gritting your teeth. Put it away!" he says, and I do, because he's right. Tying myself in knots over budget cuts isn't going to increase funding.

So I'll write another letter about what Carter needs, and what my three typically-developing kids need, and what our nation needs, and I'll send it to the people who make these decisions. I'll encourage you to do the same thing.

And then I'll try not to panic because as bad as it is now? It's soon to be worse.

Adrienne Jones lives in Albuquerque, New Mexico with her husband, their four children (two of hers, one of his, and one they share), and the Wonder Dogs. She blogs about family life, pediatric mental illness, health care, special education, and all kinds of other things at No Points for Style

Saturday, March 19, 2011

Not Fair

Today our adoption agency liaison boards a plane for Thailand, and by mid-week she’ll be sitting in a room at the orphanage with our future daughter. 

Twice a year our agency goes over to Thailand to check up on the children they are advocating for and gather new information about their health and development.  Because they did not visit her orphanage last year, this will be the first new information gathered about our daughter in two years.  This will also likely be the first indication she has that there’s a family in the works for her, and that soon her world will change forever.

I’ve been trying to put myself in our daughter’s shoes over the last few days.  She’s thirteen, she has cerebral palsy, she’s spent nearly her whole life in an orphanage and the situation she’s in is not fair.  The circumstances of how she ended up in the orphanage are not mine to tell, but suffice it to say that I wish she could have remained with her birthparents.  If that wasn’t possible, someone should have come forward in Thailand to adopt her when she was an infant.  Our agency began advocating for her when she was four years old, and someone should have adopted her then.  Instead she’s had to wait thirteen years for a family: deprived of a basic right every child should be able to take for granted.

It makes me angry to think about how long she’s had to wait; because of her cerebral palsy she’s been passed over for far too many years.  It's hard enough to make people understand that we enjoy parenting the child with special needs we already have; let alone trying to convince them of our reasons for adopting a second disabled child.  There’s a pervasive idea in society that persists despite the strides made for people with disabilities over the years: that children with special needs are somehow defective or less desirable than so-called “healthy” infants, and nowhere is this more evident than in the world of adoption.

Our daughter never should have been placed in this situation in the first place.  I would like to think that under different circumstances-- with better education of her parents and more access to support services-- that our daughter would have been able to stay with her birth family wouldn't be in a position where she'd need to be adopted.  Thailand is worlds ahead of many other countries in regards to their services and treatment of the disabled and they are moving in the right direction, but—just like the United States-- they still have a long way to go.  As a result many families end up feeling overwhelmed and place their children in government institutions like the one our daughter and hundreds of her peers currently reside in. 

I remember how terrifying it was for me when I found out that Connor was going to be profoundly different from the "normal" child I had been picturing in my head.  I try to imagine feeling that and then dealing with extreme poverty and bleak prospects on top of that, and it's a little easier to understand why our daughter's first parents might have made the decision they did.

But regardless of whether or not she should have been in this position in the first place, what's done is done.  At some point in the (hopefully near) future our daughter will be starting a new life with us.

I worry about how she’ll cope with the transition over the next few years, but I’m hopeful that she’ll be resilient enough to make the change.  The last thing I’m going to do is underestimate her abilities. 

She deserves better than that.




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

Paper Cuts

Some say the child's diagnosis is like a stab to the parent's heart.  A shock, a blow that stops the heart from pumping, the world from turning, life from living. 

I'm not sure it was entirely like that for me.  If it was, the wound wasn't mortal.  Rather it was closer to the cut of a surgeon's knife.  I anticipated the diagnosis, and knew it was necessary, prepared for it.  It was the recovery that took a long time. 

I'd wanted to stop the bleeding quickly, put a Band-Aid on it, and heal.  But you can't rush grief, it takes its own time.  I needed the stitches that came with experience.  I needed the tender care of those who had gone before me, applying balm to the wound.  First I felt numb, then I was sore, but it got better every day.

I healed up.  I dutifully worked through all the stages.  I wasn't in Denial for long, though you could say I'd been in denial all along.  I was Angry for quite some time.  I Bargained better than the canniest of salesmen.  There was the Depression.  Short-lived, but miserable depression, anemia from the blood loss.  And then Acceptance.  Text book.  Glorious, wonderful, acceptance.  All the while I'd known that our baby was no different, no diagnosis would change my feelings.  But I'd changed, my life was changed irrevocably.  I'd formed a scar.  That needed Acceptance.

Only the thing they never tell you about grief, is that it comes around again.  Not so bad.  Not bleeding so profusely.  More like little paper cuts. 

The sting reminds you of the bigger pain, as though you were ever likely to forget. I'm cut when my daughter refuses to hug her father, and only my cuddles will do.  I smarted when she spurned my parent's attentions when they came to visit.  The nick when my younger child surpasses her development, or an overseas school refuses to include her. 

Just little griefs; they sting, but they aren't fatal.  Paper cuts.

I can dress my own wounds, and even when I can't, they heal up on their own.  Give her time, she'll get there.  Bandage.  She has come so far.  Ointment.  She is amazing in her own way.  Balm.  The paper that cuts me is a masterpiece still being written.  Salve.

Acceptance isn't just getting through Grief.  It is learning that I'll go through many griefs, and just as many acceptances.  No use in denying it.  Acknowledging that I'll smart through every one of those paper cuts.  It is okay to be angry about it.  I can even try to bargain that one day my skin will be thicker, eventually dulled to the pain.  I can get depressed about it, but sooner or later I'll accept that they will come as part of parenting. 

Love hurts.  Sometimes a lot, more often a little.  If I can recover from a stab wound, I can get through these too.  Love heals too.

After all, nobody ever bled to death from a paper cut.


Spectrummy Mummy blogs daily, and can be found lurking on Facebook and Twitter.

Friday, March 18, 2011

Force Quit

I’m a list maker, a do-er, one person called me a “producer.” There is nothing quite so satisfying as crossing something off a list, and nothing quite as frustrating as moving something from list to list to list without crossing it off, despite the best laid plans.

This is a struggle I’ve had my whole life, but I’m convinced I was given a child with special needs (and constant demands) to “force quit” this neurotic, yet pleasing to society, way of being. When my son, Rojo, was first born he joined our family of three in a tiny one-bath, two-bedroom home. It would take me all week to clean the bathroom, because every time I went in to wipe the mirror or clean the toilet, his screaming interrupted me. That should have been my warning sign, but I ignored it. Instead I just kept fighting upstream to get that bathroom cleaned each week, before starting all over again.

Now, pushing fifteen years later, my before schools, my after schools, evenings, weekends, holidays and summers, are all one long exercise in futility, me with the To Do list, him with the opposing agenda, the one I fight against, the one I resent, the one that inevitably wins, every time.

And here’s the “funny,” part, when I am with my son, I am always looking for ways we can kill time together. What can we do to chew up some time? What is something that he is able and willing to do, that he also enjoys? I find myself at a lot of parks watching him play with kids one-third his age. I find myself at a lot of 7-11’s strolling through the identical aisles, marveling at the things he points out and wants me to marvel at: gum that changes flavors, glazed donuts, Slurpee machines. I find myself with a whole lot of opportunities to just “be,” if only I stop the struggle and let it in – the nothing, the everything.

Thursday, March 17, 2011

Find Out Who Your Friends Are


It’s the word that everyone uses when talking about their special needs child.  It’s supposed to be the Holy Grail of educating our kids.  We want them to be with their typically developing peers as much as possible – to learn from them and to not feel so separated from all the kids their own age. 

But sometimes, inclusion doesn’t mean including everyone.

I’ve been planning my son’s fifth birthday party for a while.  Well, he’s been planning it.  This is the first birthday that he actually understands what birthdays are all about, and he’s been looking forward to having a party at a local play space.  He’s been talking about it for months. 

The party is finally this weekend.

In planning for the party, my initial instinct was to invite his entire preschool class.  He’s in an inclusion classroom with 17 other children.  He’s one of three kids in the class with his own one-on-one aide.  This was his first real birthday party, and I thought it would be nice to invite everyone.  In the true meaning of the word inclusion.  As in not excluding anyone.  As many of the other children had already done with my son. 

I was going to make a statement.  You may not include my son in your parties, but I’m going to include your child.  So there.

I called the play space and spoke with the owner.  I was quite open with her about my son’s autism, and I told her of my plan to invite the whole class and why.  She told me her own heartbreaking story about her daughter being the only one in the class not invited to a classmate’s party, and her daughter knew she was the left out because invitations were put in every other child’s cubby.  After getting teary, I was more convinced than ever that I was doing the right thing.  I told her we were potentially looking at 25+ kids (including siblings and family) and 20 or more parents.  She paused and we discussed the size of the crowd.  And the price. 

Slowly, I began to think it all through.

Later that day, I grabbed a friend outside of the preschool and told her about my party plan.  As the words came tumbling out of my mouth, I realized that I was sounding a bit crazy.  All those kids.  All those parents.  And my easily overwhelmed child with sensory processing disorder.  My friend gently suggested that I talk with the teachers at the school to see what they thought.  Maybe they’d have a suggested list of kids to invite, instead of the whole class.  Some way to keep the sensory overload to a minimum.

I sent his aides a quick e-mail asking just that.  I got back this: “He really just seeks out G. and C. for play....would you like us to give you some ‘recommended’ guests?  We are sending home a copy of the class list in his binder, and we can indicate some names for you if you like.”

G. and C. are the two other kids with aides in the classroom.  All this time, I thought he had so many friends in the classroom.  Every day in his communication log, it says he played with this little girl or this boy.  I thought they were spontaneous interactions.  Turns out, they are structured directed social play opportunities. 

It hit me like a ton of bricks.  I was expecting to shorten a list for his party.  Not add to it.

I shared my sadness with a bunch of other autism moms.  And their response:  Dude.  Your kid HAS friends!  TWO of them.  I would love for my child to have just one connection like that.

Hello, wake up call.

Instead of feeling sad that my son only had two school friends, I should be rejoicing.  That social connection is so hard for kids like mine.  And I shouldn’t have been surprised that he’s friends with those two boys.  They are a lot like him.  They share similar interests and have the same personality.  My son calls them “the silly boys”.  They are the only kids he talks about from school.  They are the only ones whose names he knows.  That should have been my first clue.

Aren’t we all drawn to the people who are most like us?  My friends share the same interests as I do and have the same outlook on life.  We may have been brought together by some other circumstance (same dorm room, shared major in college, kids in the same classes, or kids with special needs), but we click as friends because we are alike. 

My friends reminded me that having two special meaningful connections is better than none at all.

The invitations went out to the silly boys and a few other kids and cousins.  The kids he wants to play with at his birthday, not the kids I thought should be at his birthday.

And they are all coming.  Because he is included in their list of friends too.

"You find out who your friends are
Somebody's gonna drop everything
Run out and crank up their car
Hit the gas, get there fast
Never stop to think 'what's in it for me?' or 'it's way too far'
They just show on up with their big old heart
You find out who your friends are
" - Find Out Who Your Friends Are by Tracy Lawrence

Alysia Butler is a stay at home mom to three boys, one of whom has autism spectrum disorder.  She writes about that and other things at Try Defying Gravity and tweets about her amazing son's birthday at @trydefyinggrav

Find Out Who Your Friends Are



It’s the word that everyone uses when talking about their special needs child.  It’s supposed to be the Holy Grail of educating our kids.  We want them to be with their typically developing peers as much as possible – to learn from them and to not feel so separated from all the kids their own age. 


But sometimes, inclusion doesn’t mean including everyone.


I’ve been planning my son’s fifth birthday party for a while.  Well, he’s been planning it.  This is the first birthday that he actually gets what birthdays are all about, and he’s been looking forward to having a party at a local play space.  He’s been talking about it for months. 


The party is finally this weekend.


In planning for the party, my initial instinct was to invite his entire preschool class.  He’s in an inclusion classroom with 17 other children.  He’s one of three kids in the class with his own one-on-one aide.  This was his first real birthday party, and I thought it would be nice to invite everyone.  In the true meaning of the word inclusion.  As in not excluding anyone.  As many of the other children had already done with my son. 


I was going to make a statement.  You may not include my son in your parties, but I’m going to include your child.  So there.


I called the play space and spoke with the owner.  I was quite open with her about my son’s autism, and I told her of my plan to invite the whole class and my reasoning.  She told me her own heartbreaking story about her daughter being the only one in the class not invited to a classmate’s party, and her daughter knew she was the one left out because invitations were put in every other child’s cubby.  After getting teary, I was more convinced than ever that I was doing the right thing.  I told her we were potentially looking at 25+ kids (including siblings and family) and 20 or more parents.  She paused and we discussed the size of the crowd.  And the price. 


Slowly, I began to think it all through.


Later that day, I grabbed a friend outside of the preschool and told her about my party plan.  As the words came tumbling out of my mouth, I realized that I was sounding a bit crazy.  All those kids.  All those parents.  And my easily overwhelmed child with sensory processing disorder.  My friend gently suggested that I talk with the teachers at the school to see what they thought.  Maybe they’d have a suggested list of kids to invite, instead of the whole class.


I sent his aides a quick e-mail.  I got back this: “He really just seeks out G. and C. for play....would you like us to give you some ‘recommended’ guests?  We are sending home a copy of the class list in his binder, and we can indicate some names for you if you like.”


G. and C. are the two other kids with aides in the classroom.  All this time, I thought he had so many friends in the classroom.  Every day in his communication log, it says he played with this little girl or this boy.  I thought they were spontaneous interactions.  Turns out, they are structured directed social play opportunities. 


It hit me like a ton of bricks.  I was expecting to shorten a list for his party.  Not add to it.


I shared my sadness with a bunch of other autism moms.  And their response:  Dude.  Your kid HAS friends!  TWO of them.  I would love for my child to have just one connection like that.


Hello, wake up call.


Instead of feeling sad that my son only had two friends, I should be rejoicing.  That social connection is so hard for kids like mine.  And I shouldn’t have been surprised that he’s friends with those two boys.  They are a lot like him.  They share similar interests and have the same personality.  My son calls them “the silly boys”.  They are the only kids he talks about from school.  They are the only ones whose name he knows.


Aren’t we all drawn to the people who are most like us?  My friends share the same interests as I do and have the same outlook on life as I do.  We may have been brought together by some other circumstance (same dorm room, shared major in college, kids in the same classes, or kids with special needs), but we click as friends because we are alike.  Just because my son has autism, it doesn’t mean he can’t make friends for the same reasons that the rest of us do.


So his invitations went out to his friends.  The kids he wants to play with at his birthday, not the kids I thought should be at his birthday.


And they are all coming.  Because he is their friend too.

dear mr president


Ed note:

What follows was posted on my blog, Diary of a Mom last night. I apologize for the duplication, but I'm on a mission. I'm hoping that by reposting here on Hopeful Parents, I can spread the word even further. Perhaps YOU will be moved to join the conversation too. If enough of us stand up and shout, I am convinced that we will be heard. 

So, as I say in the post, if you read the letter and agree with its sentiment, I would be grateful if you would leave a comment to that effect on the Light the White House Blue for Autism site (below). Thank you, from the bottom of my soggy little heart.

- Jess




Yesterday afternoon, I was asked to write a letter to the President.

I thought perhaps they meant the president of the PTO or maybe the president of the local Kiwanis club, but it turned out they meant, you know, the big guy. Like the leader of the free world. THE President. Like of the United States of America.

So really, no pressure.

But as it turned out, there was a good reason for it, so I was game.

The point of the letter was to tell President Obama why I think that he needs to light the White House blue on April 2nd in support of World Autism Awareness Day. And from the bottom of my heart, I do.

Please click the link below and read the letter. If you find that you agree with its sentiment, I'd be grateful if you'd leave a comment ON THE SITE to that effect. Please then feel free to share it with friends (via the link below) and ask them to do the same.

Please don't get me wrong.

Awareness is not the goal.

But it is the only means by which we can reach it.

---> Please click here to read my letter to President Obama <---


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

Wednesday, March 16, 2011

Let's Dance

The heft of the morning pins me down and taunts me as I toil to pretend it’s just another day.  I convince myself she doesn’t notice, but she’s nobody’s fool.  The forced buoyant tone of my voice cracks, I lose my train of thought, she bends and twists to insert herself into the frame of my expressionless stare.  I should be watching her like a hawk.  But I space out, partly due to the cold and flu medicine I’m taking and partly due to the scenarios in my head of how this will play out this time, exactly 1 year after the first time.

Before school, we sit in the car and wait for her aide to come and get her for the day.  I normally walk her to line up, but Addie’s kind team members have offered to pick her up at the car during my bout with vertigo, chills and aches.  I am grateful for it, though it serves to enable my distraction.

I realize after a minute that I’m just sitting in the front seat while the car is parked in front of school, not talking, not reading to her, not following usual morning protocol.  What must she be doing?  I twist to see behind me and meet her leveled gaze. I get the feeling she’s been staring at the back of my head the whole time.  I rally enough to start to talk quietly about what day it is, what classes she’ll have, what friends she’ll see, hoping for a sign back.  She just keeps watch on me, patient.  The tables have turned.  Absently, I trail off.

A familiar tune wafts from the radio, something I have not heard in years.  I’m brought back to the summer it came out.  1983.  It was all ahead of me then.  I was completely weightless that summer and a few others, no decisions to make beyond which leggings and how many rhinestone bracelets I’d wear that day.  I didn’t feel it at the time; certainly the morose drama of my teen years convinced me that I had complicated life.  But in retrospect, of course, the simplicity is startling.  I had a walkman and the new David Bowie cassette tape in it.

In my reverie, Addie recognizes the flash on my face and lifts her own mouth corner in a brief grin.  She was waiting for this; waiting for me to come back, for proof (and not words) that all would be fine.

I turn up the radio and serenade my non-verbal, cognitively diverse and highly attuned first grader:

Let's dance
Put on your red shoes and dance the blues
Let's dance to the song they're playing on the radio

Wrapping my arms around the back of my seat so she could see my hands, I sign along with the words that I remember from those easy smooth days.

Let's sway while color lights up your face
Let's sway
Sway through the crowd to an empty space

Before long, my thoughts race ahead of me and I again trail off, remembering a line coming up. The line wrings all the energy from this little show as my gaze slides off my happy, here-and-now girl and out the window.  Just as quickly, I feel her tiny fingers hook mine.  I look back as I am meant to.  She opens and closes her mouth repeatedly and signs the word ‘sign’ with her own hands – her message to me not to stop, to keep singing and signing, that she is not ready to disconnect from me yet.

I pick up again, all volume, wild animated expressions and extreme enunciation, the way she likes it. 

If you say run, I'll run with you
If you say hide, we'll hide
Because my love for you

I have no power against the break in my voice or against the tears that wrench free as I sing out the anticipated line. But she allows me that, patient girl.

Would break my heart in two
If you should fall
Into my arms
And tremble like a flower

Addie’s suspected seizure activity is back, 1 year after it first reared.  And it is no less terrifying than the first time.

Monday, March 14, 2011

Mom Instinct Strikes Again!

A couple of months ago I wrote here about my oldest son, who is not my special needs kiddo. I wrote about my suspicion that there was something going on with him, that he was not as typical as he often seems to be

At the time that I wrote that post, we were mid-psycho/educational evaluation. Part of me wondered if we were wasting a ton of money evaluating a perfectly typical kid. But another part of me, backed up by information from professionals, knew something was going on. "If there is smoke," that part of me reasoned, "then there is fire."

My husband and I met with my son's evaluators last week and they told us that although he "isn't a cookie cutter kid," he fits securely into an ADHD diagnosis. After hearing those words and talking to the psychologist and the educational diagnostician for the next two hours, so many things clunked solidly into place.

When I wrote about this in January, ADHD wasn't on the list of things that I suspected could be in play. I suppose I really didn't know much about ADHD (still don't, frankly), but as they went through all their data points and observations, it all fit.

I am so glad I trusted my instincts. My son's ADHD has not yet affected him at school. According to the psychologist, the survey that his teacher filled out was so glowing as to be technically invalid. My son is such a model student, in fact, that I wonder how herculean of an effort it must take for him to be so.

We were left with a recommendation to monitor him. We are armed with the knowledge that as the demands of school change and our son may not be able to compensate so well, we must be vigilant in making sure he doesn't falter. At home, we can make things easier for him. We can work with the school to make sure that the teachers know what he needs, even if he currently won't qualify for accommodations or services.

We can understand that even though he knows how to act, his impulse control issues when we are out and about are not a result of him being badly behaved, but just wired differently.

Just as with my middle son's autism diagnosis before, this diagnosis brought me no sadness, but rather relief. I am relieved that I am now learning how to equip myself and my son to best help him be a successful man. My guy is an amazing kid, and I feel lucky that we had him evaluated so I can better understand him and help him understand himself.

And even though I say it all the time, it bears repeating: You know your child better than anyone else. Trust your instincts. 

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.


Like Father, Like Son

When Moe was approaching 2 and still not speaking, we were, of course, concerned. Autism was in the back of our minds, but we didn’t really believe that would be the diagnosis. Maybe it was just denial, but Moe did not have a lot of the characteristics that we, not knowing any better, believed were typical of very young kids on the spectrum: he loved peek-a-boo, was a great eater and sleeper, and was the happiest little baby.

In fact, when Moe was first evaluated through the regional center, he was not given an autism diagnosis. I now realize that they are quite stingy with that diagnosis, lest they are forced to provide more than the minimum services. We had to pursue a private diagnosis, then go back to the Regional Center to request more appropriate services.

We were also optimistic that Moe would not be diagnosed with ASD because my husband Jeff was a late talker. My mother in law had told us that Jeff didn’t talk until he was three. So I held out hope that Moe would simply follow in his father’s footsteps and talk at three. Moe is now almost four, and still not talking. Jeff also did not have the motor delays that Moe has, and, according to his mom, Jeff’s receptive language skills were also not (or less) delayed. So I learned to not rely on the fact that Jeff was a “late talker.”

Recently, however, my mother-in-law came across some old notes indicating that Jeff perhaps didn’t talk until he was closer to four and a half. It still seems as if his receptive language skills were stronger than Moe’s, but memory is a funny thing. And despite myself, I feel another round of hope welling inside me that perhaps Moe is just like his dad, and that by this time next year Moe will be, as the old notes about Jeff said, finally “talking beautifully.”

An acquaintance of mine recently contacted me to ask if I knew how to go about getting a diagnosis for her husband, who they suspect has Asperger’s. (I did not, but used my network to find a qualified therapist.) It is hard to have a real sense of what Jeff was like at Moe’s age, but my friend's question got me wondering about whether Jeff would have been diagnosed on the spectrum if he were a child today. After all, we grew up in the 70’s, when the kids diagnosed were those with “classical autism,” what we today might consider on the more severe end of the spectrum. It was also a time when kids didn’t go to preschool at three or even two years old, where a teacher might notice that your kid is developing differently from the others his age. I do know that Jeff did not have any early intervention and did catch up on his own. I don’t believe he was a late reader.

I am not saying that I think my husband has autism, nor do I have any way of knowing if he had traits as a child and is now “recovered," for lack of a better term. I am also not saying that I think Moe has been diagnosed incorrectly; he now very clearly has autism with speech delays just one piece of his puzzle. I am also not saying that early intervention is not necessary. It is vital and Moe has been receiving services since even before his "official" diagnosis. However, I do wonder if some people may be no worse off for never having been diagnosed. Some development may just have to happen, and no amount of early intervention is going to cause a child to just start talking if his or her brain is not ready for it (though therapy may help speed this process along).

Moe's story may not be at all like his father’s. I’m thankful that I’m raising my son at a time when autism awareness is high, that his delays were caught early, and that excellent services are available in my area. But regardless of how he gets there, I do still hope that Moe follows in his father’s footsteps to becoming a wonderful, smart, loving man.

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

Sunday, March 13, 2011

Mr. Spock, Mind Melds, and Misunderstandings


Are there any Star Trek fans out there? Well, I am one, of both the original and The Next Generation. Going back decades (but that’s why reruns are a wonderful invention),  there was an episode of Star Trek called “Devil in the dark”  (1967).  The story was about the Horta, one of the few life forms made from silicon. The Horta had been killing people on a mining colony and the crew of the Enterprise was called in to find the creature and kill it. Well, Mr. Spock discovers, through a mind meld with the Horta, that her murderous behavior was intended to defend her 1000s of silcon babies who the miners had been killing. The Horta, as any empathic mother would be, was in a great deal of pain and desperately attempting to defend her young.  The Horta, under her stone-like appearance was very sensitive and very misunderstood. In the final analysis, she was just another mother trying to save her babies.

I thought that many of the parents who read this blog might be able to relate to this particular Star Trek episode. It can be difficult dealing with a world that will sometimes misunderstand your child and create more harm than help. And, in response, I’m sure that you know parents who have had to develop a hard shell to guide their children through the school system, medical establishment and social mine fields. The shell, just like the Horta’s exterior, becomes a way to protect deeply vulnerable emotions that are exposed when we have to protect the people most near and dear to our hearts.

Too bad we all don’t have a Mr. Spock and the crew of the Enterprise to help us understand and negotiate peaceful solutions. I wonder how difficult it is to learn the mind meld technique and is it only offered on the planet Vulcan?

Crossing Over

If I told you I walk my son to school because he has to cross a busy road, you probably wouldn't think anything of it ... unless I also mentioned that he's a junior in high school, about a week short of eighteen years old. Then the thup-thup-thup sound of helicopter parenting would begin to beat in your ears, and you might feel silent pity for the teenage boy whose mother just won't let go, the adolescent with disabilities whose mother won't give him wings, the young man who never has a chance to fit in because his dang mother is too busy fluttering around him, removing all challenges, limiting him with her smothering concern.

And I will tell you that yes, my son may be mompecked and overprotected, but that's better than being a wet spot in the road.

My guy has that lovely combination of poor cause-and-effect thinking and poor impulse control that puts so many young people with his diagnosis of FASD in danger of becoming roadkill. At this time, I have three worries about his road-crossing abilities: 1) He will dart into the road without checking for oncoming cars; 2) He will concentrate so hard on checking for oncoming cars that he will forget to cross the road and be late for class; 3) He will enter the roadway when it is safe but become distracted by something on the ground and bend down to examine it, making himself an unseeable target for someone in an enormous SUV.

My son has those worries too, I think, because he's been very eager for me to walk with him, across the road, up the hill, almost all the way to the entrance. But within the past week or so, that's started to change. Spring is when he often makes developmental leaps, and maybe this year he's catching up in the area of "not needing your mom." I've faded back little by little, too far to cross the street with him but close enough to yell, "Okay, NOW!" He's learning that he can follow other kids as they cross (and I pray that they know what they're doing). On Friday, he had to go to school very early, well before the start of traffic, and he did it all by himself. I suspect he's going to want to do that again.

He can keep me from holding his hand, from grabbing his arm, from walking all the way; he can dismiss me with an "I don't need you!" and I'll go, hoping he doesn't. But he can't keep me from watching from our back window, which conveniently overlooks the crossing-over point. I'll bet if I open the window and shout through the screen, he can hear me saying "Go!" or "STOP!"


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 a 17-year-old with FASD, both adopted from Russia in 1994.

Saturday, March 12, 2011

Time to use my support system

For the past 3 years we have been running from appointment to appointment without much of a break.  We were muddling through the days as a family but really wanted more time for spur of the moment activities.  Our schedule took a turn for the better when we made a family decision to slow down over the holidays and carried that decision into this year.  Recently, though, I've just sort of lost my knack for remembering things.   

Oh, it's not that I don't remember that we have appointments - they are clearly marked on the kitchen calendar.  It's more that I don't remember the day of the week or the date of the month each morning when I wake up.  Lately I have been relying on and am extremely thankful for my support group of family and friends that remind me of upcoming events because without those reminders I sometimes wind up missing them despite my best of intentions.  (A special thank you to Heather for reminding me that today is in fact the 12th of the month and not the 10th like I thought!)

I've been thinking back to the initial appointments to get Emma's medical diagnosis and that the one thing we heard over and over again is do you have a strong support system in place.  Are family and friends near by to help you out?  I now know why that question was brought up so frequently.  

Raising children requires a lot of love, hard work and dedication.  Raising a child with special needs requires all of this plus an extra-large dose of stamina.  I didn't fully realize how much we would need our support system until rather recently and it has me thinking that perhaps I need to do some work building up our supports.  I think I need to reach out more and ask for help.  Just this week a mother pushing a stroller asked me to go a tad bit out of my way and open a door and of course I willingly obliged.  It occured to that her request was so simple and, yet, I have very infrequently asked something this simple of others - even when I am pushing a wheelchair, rolling a gait trainer behind me and managing the two girls it doesn't usually occur to me to ask others for a bit of help.  And now I'm thinking it's very silly of me, indeed, not to ask for a bit of help when I need it!

My fiercely independent streak does not always work in my favor.  We, as humans, are interdependent on each other and I am going to make it my goal to begin to ask for help when I clearly need it.  I believe taking this first step will not only solidify my existing support network but also broaden it.  

While I'm working on asking for more help, I'd love to hear tidbits of wisdom from those of you who have mastered the fine art of calling in the troops for support.  Feel free to share them in the comments section.  Thanks!

The Return of Hope

Our 5-year-old son Ethan has been deaf since birth, and at age 13 months, received his first cochlear implant. One year later, he underwent surgery to get the other ear implanted. He used his hearing incredibly well, until suffering a setback in late June of 2010.

For many months leading up to June, we suspected that something wasn’t quite right with one of his implants. Ethan’s behavior at school had deteriorated and he was very resistant to wearing his right Ci. His lack of ability to communicate made it extremely hard to figure out what was going on and audiological testing created more questions than answers. (Further testing later revealed that the right Ci was no longer functioning but the left Ci remained in good condition.)

Then one day in late June he decided he was done wearing both Ci’s. We tried having him wear just the left Ci, but he would have nothing to do with it. Whatever was going on with that right ear was being generalized to the left side and he would go bananas if we came near him with his processor.

I should note here that typically developing deaf children with Ci’s generally develop very articulate speech and can become excellent communicators. Ethan’s difficulties with language and expressive communication are a result of having autism. He knows hundreds of signs and has well developed fine motor skills, but his brain just doesn’t cooperate. He tries very hard to speak and shows a strong desire to be verbal, but apraxia adds an extra challenge.

This little boy has layer upon layer of communication disorders, but he also has a hard work ethic and a tenacious, strong-willed personality. In spite of everything in his way, he continues to make progress and amazes us every day.

Parenting a child with autism is significantly difficult in its own right, but when your autistic child is unable to hear, you really have to think outside the box. I don’t get his sustained attention long enough to sign a complete thought to him, but luckily he is a reader and loves words, so we’ve capitalized on that as a means of reaching him. It has been the hardest 9 months of parenting I’ve faced in his 5 years, but we’ve finally turned a corner.

After patiently following his lead for several months and using an interpreter at school, we have finally managed to get Ethan to wear his left Ci. He has been hearing for about 3 or 4 days. He had a speech and hearing evaluation this week, after only 1 day of hearing, and completely amazed everyone with his abilities. It appears that he really hasn’t lost any ground at all.

Ethan is dancing to The Wiggles this weekend, and I am imagining all of the ways in which his life, and ours, is about to open up again. 

Friday, March 11, 2011


February 28 was Rare Disease Day—a brilliantly cheerful day that garners about as much joy and partying as St. Patrick’s Day in Boston or Mardi Gras in New Orleans.  Okay, just kidding! However, it is interesting to me as a mom with a child who has a rare disease that there is an emerging collective voice for those who are “rare but equal.”  This year’s focus for Rare Disease Day was on health inequity (see MOM-NOS’ post today to get collectively pissed off about this topic for our children with disabilities).  50% of rare diseases touch children.  8 days before Rare Disease Day, Sylvie hit her 5038 seizure mark (July 14, 2008-February 20, 2011).   

5038.  That is approximately how many seizures my daughter Sylvie has had since we started counting in 2008.  5038 seizures in 922 days.  That’s about 5 ½ seizures a day over the last 2 ½ years.  Some of them are small seizures.  Some of them are large.  Some of them are howlers, and some leave her dazed.  5038 seizures in her tiny little body—we keep tabs by writing them down on a piece a paper on the side of the refrigerator. Her twin sister yells to me if she notices Sylvie seizing when I am out of the room.  Her personal care assistants count them. Her aunties and grandparents and neighbors and friends count them.  It’s a cooperative effort to estimate her seizure activity every day.  We count seizures and Sylvie’s number-loving papa devotedly enters the data into an excel spread sheet in an attempt to make sense of the craziness that jumps around our daughter’s brain.   Sylvie and her sister turned 5 in January; that’s 3 years more of living than most kids experience who have Krabbe disease.  While papa continues to count seizures, maybe I need to start counting hugs, kisses, coos and loving—I’m guessing they would far outnumber 5038.   


When Kirsten Isgro isn’t counting seizures or having tea parties, she is a professor of Communication Studies at the State University of New York and the mother of 5-year old twin girls.

When the political is personal

I apologize in advance if I make no sense.

I’m all jacked up right now on albuterol and codeine.  I didn’t sleep last night.  My ribs and throat and ears hurt from all the coughing.  I look in the mirror - and this may be the codeine talking - but I SWEAR I see Charlie Sheen looking back at me.  Except without the tiger blood.  Or the goddesses.

So, I was going to call in sick to Hopeful Parents this month.  But I can’t.  Instead, I need to channel my drug-induced inner Charlie Sheen and give you a full-force, all-out, face-to-the-camera rant.

Something is very wrong in New Hampshire.  Or something is very wrong in the current political climate in our country.  All I know is, something is very, very wrong.  There is a pendulum swinging away from hope and change, and it seems to be heading directly at my son.

There were two news stories this week – both out of New Hampshire – that prompted this rant.  The first was from a budget committee meeting in Conway, in which the topic was funding for special education.  In this video footage of the meeting, budget committee member Ray Shakir makes his case:

“The individual responsible for special education said at one of our meetings that there was no such thing as an uneducatable person.  I would dispute that fact.  There are certainly individuals that are uneducatable… I am simply suggesting to you and everybody else that there should be a line drawn where the taxpayer is responsible to educate certain people.  I am not suggesting by any means that we should not educate people with disabilities at all.  I’m just suggesting to you that there should be a point at which taxpayer considerations should be paramount… that there are people in this community – many, many people in this community – that are living day to day that cannot afford to spend money on people who are and, for all intents and purposes, will be living on the government dole for the rest of their lives.  That’s all I’m saying… That’s the way it is.  You people are divorced from reality.”

Remember that Shakir’s words were not captured on hidden camera or in a secret recording over drinks with supporters, which, certainly, would have been bad enough.  Instead, Shakir shared his vitriolic opinion with pride, in a public forum, to a room full of citizens, fully aware that he was being captured on film by the local news team.

And if these are the things he is saying on camera, what is he saying behind closed doors?

Who are we electing?

And why are we electing them?

Why are we electing people like New Hampshire state representative Martin Harty, who, according to the Concord Monitor, this week said the world would be better off without “defective people.”  He further clarified his statement, saying, “"You know the mentally ill, the retarded, people with physical disabilities and drug addictions - the defective people society would be better off without."

Harty then offered his solution:  "I wish we had a Siberia so we could ship them all off to freeze to death and die and clean up the population."   He later characterized it as “a joke.”

Good one, huh?

Both of these incidents occurred in the same week in which the New Hampshire state legislature began hearings on proposed budget cuts that far exceed the dramatic cuts already proposed by the Governor.   The House proposes cuts to the Department of Health and Human Services that would have devastating effects on families of children with special needs.

These examples come from one state in fifty, but the issues are not unique to New Hampshire.  People are frightened in the current economic climate, and some are too quick to protect their own interests by ignoring the interests of some of the most vulnerable members of their communities.

But there are voices of reason.  If you watch the video from the Conway budget committee meeting – and I hope you will – you will hear the impassioned voice of a citizen at the microphone, who responds to Shakir’s unfathomable diatribe, saying, “Mr. Shakir, you are physically making me sick right now...  What you are saying, Mr. Shakir, is immoral, unethical, and illegal.  I demand your immediate resignation from this budget committee.”  The crowd erupts in cheers.

A petition is underway calling for the resignation of Martin Harty.

This afternoon, New Hampshire Governor John Lynch issued a press release , in which he urges the House to reconsider their proposed cuts, saying, “I am deeply disturbed by the apparent direction of the House Finance budget. These proposals would seriously impair the operation of state government and services that the people of New Hampshire need.”

We need to empower the voices of reason.  We need to become them.  Whether we live in New Hampshire or elsewhere, we need to stay engaged, speak out, write letters, and take a stand.

We need to rant on behalf of our children - even if we’re all jacked up on albuterol and codeine and operating on a few hours sleep - even if we’re sore and we’re tired and it all seems like more than we can manage.

There are people out there – people in positions of power - who make no sense.

We have to take them on.


When she’s not jacked up on albuterol and codeine, MOM-NOS blogs at Mom – Not Otherwise Specified. Today she’s trying to set her own health concerns aside to send healing thoughts and comfort to the people of Japan, and to all who were affected by the earthquake and tsunami.