Saturday, May 28, 2011

To the Beat of Her Own Omnichord

She tried piano. It was too stressful. 

She tried violin.

She tried cello.

The music came easy but the panic associated with making mistakes, was too much. 

She has such an amazing musical ear. Such a shame to "waste" it, just because of anxiety. 

So we've set aside formal lessons and have been focusing on music therapy. Music, in an environment which is not so stressful for her. Music, purely for the joy of it. Last week was her recital. She made a music video with her therapist. Riley was responsible for all the artistic decisions, and she is playing the music (on an omnichord) under the video. It's also her art on the opening screen. Yes, I'm just a tad proud. 

If there is one thing my daughter has taught me, it's she doesn't have to do everything like everybody else. What's cool is, through her, I've learned neither do I. 


Michelle O’Neil has contributed to A Cup of Comfort for Parents of Children with Autism, and Special Gifts: Women Writers on the Heartache, the Happiness and the Hope of Raising a Special Needs Child. She has written for Literary Mama,The Imperfect ParentAge of AutismThe Bark! and Sensory Integration Special Interest Section (SISIS) Quarterly Newsletter, a professional journal for occupational therapists. She blogs at



Twenty Questions

 Happiness is the longing for repetition. - Milan Kundera    

Children diagnosed with Prader Willi Syndrome often experience repetitive patterns of speech. They will focus on certain words, phrases or conversations and use them over and over again. Experts claim this is part of the obsessive/compulsiveness tendencies associated with the syndrome.

For my son Nicholas, it is a tool he uses to feel secure and gain a tiny bit of self control over a life ruled entirely by thoughts of food. I believe that folks diagnosed with PWS feel overwhelmingly repressed by the tyrant appetite that rules their every thought...every moment of every day.

As a parent of a child diagnosed with this syndrome, it is difficult to answer the same line of questioning, again and again. It requires a superhuman level of patience that can only come from the unconditional love a parent has for their child who is suffering.

When my son was born, I was educated about this and other aspects of the syndrome. I wondered about this bizarre symptom and how I would withstand a constant barrage of repetitive questions from my child? Could I handle the same questions asked over and over again... for the rest of my life?  My stomach ached as I thought this sounded like a lifetime of hell to me. I questioned my ability to be a good parent to my son.

It has been nine years since my son was born and diagnosed with Prader Willi Syndrome. In that time, we have developed some interesting lines of conversations. They go something like this...

"Mom, did you have trouble putting the car into the vanilla house garage?"

(The "vanilla house" is a term Nicholas uses to describe a vacation house we visited on Cape Cod.)

"Yes, Nicholas, I did," I reply as I realize the game is officially on!

"Why was it hard to do?" he asks.

"Because it was a tight fit, wasn't it?" I answer.

"Yes, it was," he exclaims, now starting to smile brightly. On his face is a look of welcomed relief, like I have just started to scratch a bothersome itch that was slightly out of his reach.

"But you did it though!" he says proudly.

"Yes, I did it!" I answer triumphantly.

"Why was I able to do it?" I ask. I smile at my son, knowing exactly what is about to happen next. He is shining and almost bursting with torturous anticipation. Like a comedian waiting for the perfect timing to deliver his punch line, Nicholas answers....

"Cuz, you're a good driver!" He shouts, laughing hysterically. He is overjoyed and pleased with his expert ability to deliver his much anticipated line on cue. He beams with pride remembering his superhero mother's ability to maneuver a large vehicle into a small garage, a feat that seemed impossible to him. Our familiar dialogue about this event comforts him. His eyes sparkle, as he looks at me with love, seemingly thankful of my willingness to indulge him in his blinding passion for sameness.

Although this routine gets very old for me, particularly when I am stressed, I also realize that my worst fears have been realized, I am superhuman, at least in my son's eyes. And although my life is indeed monotonous and hellish at times, it is also as if I am living in a world where I am the hero, the champion, the unconditional love of my son's quirky life, a person who is willing to empower him and acknowledge his desperate need for structure…. without any questions.

As I am lost in this thought while writing this post, I hear a tiny voice over my shoulder say…

"Mom, did you have trouble putting the car in the vanilla house garage?"

And so it begins again…

Satisfaction lies in mindful repetition, the discovery of endless richness in subtle variations on familiar themes. -George B. Leonard


May is Prader Willi Syndrome Awareness Month. To learn more about PWS or to make a much-welcomed donation, please visit

To read more about our family adventures, please visit our blog at:

Friday, May 27, 2011

He's a Boy!

After Oscar was born with Prader-Willi syndrome we found ourselves reminding people that he was, first and foremost, a little boy.  Not a diagnosis. It amazed me how many doctors and therapists and even fellow parents would talk about children and adults with this disorder as Prader-Willis.

“Well, you know Prader-Willis, they’ll drink the salad dressing if you let them.”


“Shoulda known it was a Prader-Willi locked in the bathroom all that time."

As the parent of a little baby, this language angered me.  It implied that the children who had PWS were defined solely by PWS.  But I too struggled in the first few months to separate Oscar from his disorder.  Lying awake to the chant Prader-Willi, Prader-Willi echoing in my head, night after night while Oscar slept in the bassinet beside me, I admit that his diagnosis really did define my relationship with him at first.  But I still never called him a Prader-Willi.  His name was Oscar.  I was clear about that.

Over time I’ve loosened up a bit.  I still run into doctors and other parents of kids with PWS who use this language, and while I still don’t like it, I usually let it go. It no longer threatens my perception of who Oscar is – an engaging young boy who happens to have PWS.  If I can, I use “people-first language” in their midst and hope that they pick up on the difference.  

Lately, though, I have been astounded at the many comments doctors, therapists and other parents of kids with PWS are making about Oscar right in front of him.  Comments that could cause Oscar anxiety or chip away at the self-esteem we’ve worked so hard to build.  Comments that threaten Oscar’s trust in our food security plan.  Comments no ten year old should have to hear. Comments like:

“Wow, he’s really not that flexible!”

 “Is he getting into the food yet?

 “He’s looking thin. I think we might need to increase his calories”

“Come on people,” I want to say. “He’s right here. He can HEAR you.”  But I can’t say that in front of Oscar.   Instead I pointedly raise my eyebrows and deflect the comment with a supportive statement about Oscar.  If I can, I send Oscar off on a quick errand so I can address the person directly.  And mostly they get it.  Mostly.

But as my husband asked just the other night, why can’t people just remember that he’s a boy, not a specimen? Is that really so hard?


Mary blogs about life with three children, including Oscar who has Prader-Willi syndrome, over at Finding Joy in Simple Things.

The War I Want to Wage

If it had been my time to write this post a few weeks ago it would have been very different. It also wouldn't have been a post that belonged on a site called Hopeful Parents. No, it would have been the antithesis of hope. It would have been an extremely dark and depressing piece.The month of April and most of May were so depressing that I completely lost that time. I didn't just forget to write my piece for the 27th of last month, I didn't even know the 27th had come and gone.

Grief and sadness and desperation and fear and worry and angst and exhaustion and and and . . . . the list is endless. They all hit me hard yet again this year. But somewhere in the midst of it I suddenly found a way to stop and catch my breath and pull myself out before the undertow took me down for good.

Mother's Day is what turned it around.

I've never been big on Mother's Day. All I ask from my family is that I am not expected to get or do anything for anyone that day, in particular I do not want to make meals of any kind or even fetch a kid a snack. I think the homemade cards and crafts from the kids are sweet and do enjoy them but overall the day just has never seemed to mean to me what it does to so many others.

Then this year as Mother's Day approached I was going through reports and notes for my oldest son. I was desperately trying to piece together his history (that I had always meant to organize but never had) and now we needed information quick and I was sifting through 3 binders and 2 boxes to find what I needed. While looking at a particular report it hit me that the date was exactly one year ago.

Then, stuck in with all the papers, was a card. A Mother's Day card. I pulled it out and looked at it. It didn't look familiar but I knew it was my youngest son's printing. When was this from? A glance inside showed my printing in the corner - May 2010. I had written in the corner of this card that I had no recollection of. Then I started trying to remember May of last year and moved to the pictures folder on the computer. Yes there were indeed some pictures from Mother's Day. And I couldn't remember any of it. NOT AT ALL. I realized then that I would in fact I'd be hard pressed to tell you anything about January to June of 2010. We were in survival mode and while we all eventually emerged from that dark place, obviously my memories did not. 

And so, while sitting on the floor surrounded by all the reports, IEPs, Meeting Minutes, government forms and applications - it hit me. I could put every last little bit of energy I have left (and believe me after 9 years and 11 diagnosis I don't have much - but then I don't have to tell YOU that) into "system" things like meetings, phone calls, letters, worry and advocacy OR I could be a mom.

I can continue to be every last bit of my heart and soul into being my child's: advocate, protector, defender, interpreter, pharmacist, behaviour therapist, security guard, expert mediator, speech therapist, occupational therapist, attachment expert, data analyst, symptom manager, crisis manager, dietician, fitness trainer, case manager, social worker, psychologist, service coordinator, teacher  OR I could be his MOM.

In fact - to go a step beyond - I could be a mom to BOTH my boys.

Don't get me wrong. I'm not going to stop standing beside my son to make sure he gets what he needs. But I am trying to go about it a different way. If it's been a rough day and I have a choice between eye therapy or cuddles and story time - guess which one wins?? If my kids want to play in a puddle and I am dragging them to the car because I need to get home to make a phone call about a service that I have been trying to unsuccessfully get for 8 years - guess which one wins now? If we get home from school with a plan to fly kites and the phone starts to ring and I know of I pick up the phone it's going to be a long conversation with the case manager - guess which one wins??

Our family has been through a lot. Many other families have been through a lot. I know many many mothers who wage a war everyday on behalf of their kids. I understand it, I honour it and I too have done it. But when my children are grown I don't think they will ask why I didn't get around to starting that visual schedule for them or why I didn't fight for them to receive weekly therapy sessions. But I do think they will wish that they had more of their mom. That they will be happy if they have grown up with a happy, connected mom. They far too often have received stressed, depressed and angry mom instead. 

So that day, just before Mother's Day, as I sat on the floor with that card in my hand I made a decision.   I put away the reports and files. I decided to take the chance that I wouldn't finish the research I needed to and I called to my boys and we went to the park and played in the mud and they rode their bikes. When we got home my youngest gave me the BIGGEST hug and kiss and the smile on his face was enough to tell me THIS was the war I wanted to wage. To be their mom and to enjoy time with them again.

It's not easy. The phone rings or it makes that sound to announce a new email and I want to jump at it. When someone calls to invite me to a community meeting about Children's Mental Health when I am supposed to be doing school work with my kid I feel the pull to go, to make the voices of families heard. But I know my reality. I know I cannot save the world, it is not mine to save. I will love my children and my husband. I will try to reconnect with friends that I have let drift away. I will do things for myself and I will work hard to not work so hard. There will be times where I will need to put on my body armour and fight but I will make sure I have exhausted other avenues first and I will retire the armour as soon as the fight is over. Who knows, there may be a period of time where the armour just sits and gathers dust. But I'm ok with that. My sons deserve to have a mother and I deserve to mother my sons.


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



Wednesday, May 25, 2011

Let them Fear?

My kids sure have their fears. They are scared of bees, certain spiders, riding a bike (she is anyway), falling, darkness, and many, many fears while we are camping.

During a particular camping trip last fall the sounds and bugs and fears were heightened. It was the first time since my son’s (finally appropriate) mental health treatment that we camped; so he was aware of his surroundings because he wasn’t living inside his head for the first time in a long time. He wasn’t suicidal. He was also participatory.

I think the fact that he cares about what is going on around him makes him fearful. The same is true for my daughter too actually, although her fears have been more consistent over the years.

Julian was exasperated because they were both afraid of something or some things and he let out that parent exhale. I told him I thought that the kids have to be allowed to be as fearful as they want and we have to just try to reassure them. They've spent years being brave and not fearful through testing, dialysis, needles, doctor meetings, surgeries, procedures, blood so I figure we can give them some leeway.

I know it seems like an obvious thing but it's not. It's hard to remember that their mental health is like a rubber band and for (some) kids that have survived, have lived through life-saving illnesses and surgeries, have to have some spring back on the band. They aren't typical kids, no matter how many people want to see them that way since they have normal kidney function. Typical kids don't go through what they have and because of their experiences my kids aren't going to react like typical kids.

Fearing other things not connected to their health helps them cope with the fears of their on-going health care experience; what they know will be their on-going, life-long health care experience.

And that is why we should let them have their fears.

Julia blogs her family's journey at Kidneys and Eyes and began a social networking site for special needs familieis called Support for Special

Tuesday, May 24, 2011

A letter to myself

Recently it was brought to my attention that my anxiety was a manifestation of being overwhelmed by the deep set of emotions I have for my son Ben, 17. Whenever these hard emotions surfaced, I was told, I popped into obsessing about something ridiculous as a defence mechanism.

A therapist suggested that some of my underlying emotions about my son included deep disappointment, grief, guilt and anger.

When I first heard the word 'disappointment' I bristled at the thought. How could I be disappointed in my precious son?

But the more I thought about it, it came to me that my disappointment centred on feeling unsuccessful at promoting his development, despite 17 years of hopes and dreams and intensive intervention.

I have done everything in my power to support my son's progress, but he hasn't made the gains we would have hoped for. He can't speak or write and although he signs, it is not a fluid form of communication because of his fine-motor problems. His complex disabilities make it really hard for him to learn.

I still sit with him every night at the computer, sounding out and pointing at letters, while he painstakingly pecks out a short sentence or two in an e-mail. But other than the opening greeting and his closing "Bye, Ben" he can't initiate the structure of sentences on his own. I am working on things we've been working on for a dozen years. Some things we've given up on, for now, like math.

It's hard for me to reconcile the efforts I've put into my son with the outcome on his development (and no, I don't view my son as a 'product' but as a sacred human being). It puts the lie to all of those platitudes about 'anything is possible if you work hard' and 'people get what they deserve.' It's hard for me to acknowledge that much of people's success in life is simply the luck of the draw -- the gifts they are born with.

I wonder about whether I'll still be working on the same basic reading skills with Ben in 20 years. Maybe I will be, and maybe that will be okay.

It was suggested that I write a letter to myself to chronicle some of the efforts I've made on my son's behalf. I am sure all of you have similar letters within you that you could write yourself. Here's a start on mine:

Dear Louise: You have always done everything humanly possible to improve Ben's life, support his development and honour who he is as a person.

I can't think of one instance where your effort wasn't 150 per cent.

I remember when you got his medical records from SickKids a few years ago, and were astounded at the number of surgeries and therapies he had in his early years. He’s now had over 15 surgeries and last year spent 3.5 months in hospital doing rehab. How were you able to physically and emotionally keep that up?

You did so much research in the hopes of finding treatments that could better his life. You contacted experts all over the world and even started an international association for people affected by Langer Giedion Syndrome -- which included the two doctors who named the syndrome and other experts in LGS, growth disorders and bone problems.

You connected over 100 families after being told there were only 60 reported cases in the world.

You produced a newsletter that was filled with human stories about children and adults who have LGS, and their families. In addition to providing practical and emotional support for families, it was a place where people could celebrate their children and their accomplishments. You sent it out to hundreds of geneticists across North America with the goal of raising awareness.

In terms of promoting Ben's speech, you left no stone unturned. From researching different treatments for apraxia and oral-motor problems online, to getting him therapy -- at one point you were taking him 4 times a week at a cost of $700 a month -- speech was a constant focus from about the age of 1-2. You sought out experts in the U.S. -- Sara Johnson and Nancy Kaufman and a specialist who was an expert in kids with velopharyngeal flap and oral structural problems. You and D'Arcy drove the 10 hours to New York -- a number of times -- for a single appointment with a speech therapist, then turned around and came home.

You had Ben seen by a whole team of specialists at the New York University Medical Centre. You had him go for intensive, twice daily speech therapy for 2 weeks at a special clinic in Michigan -- paying for a worker to go with Ben and D'Arcy, and the two hotel bills.

You spent the second week there, and for you and D'Arcy you took your vacation, not to relax, but to try to improve Ben's life.

You spent thousands and thousands of dollars on these trips -- borrowing against your mortgage to do so.

You tried so hard to get Ben a good education that met his needs. You would print out all the curriculum requirements for each year and spend hours adapting them for inclusion in his individual education plan. But over the years it seemed that the IEPs weren’t followed and his progress wasn’t properly tracked. You spent hours on what, now, looking back, seem like "make work" projects -- like laminating picture word cards.

At one point you convinced the distributor of a voice technology manufacturer to loan you a Dynamite voice device because your rehab centre wouldn't approve such a sophisticated device. You were able to videotape him using the dynamite and that resulted in the rehab centre reversing its decision about approving him for funding.

You found exceptional people to work with Ben -- people who viewed it as a calling.

When he didn't get what he needed in his kindergarten class, you put him in an alternative school and paid a worker $500 a week to accompany him -- 3/4s of your salary at the time went to it.

When you were told by Dr. Rosenbaum that sign language was the way to go, you took the whole family -- and two workers -- up to an immersion sign language camp -- renting a cottage nearby to do so. You had to pay one worker to look after Ben and Lucy at the cottage while you and D'Arcy and the other worker attended the immersion course.

You paid a sign-language instructor to come to the house every week to teach sign language and you also sent her into the school to teach the kids there. You wrote a story about sign language for the school newspaper to try to gain the other parents' support.

You purchased all kinds of sign language books, educational workbooks and speech and OT tools. In addition to speech, OT and PT, Ben did ABA therapy, craniosacral therapy, osteopathy, naturopathy -- you name it, you tried it. I remember one of your workers even took a photo of him to a "healer."

For a couple of years he had g-tube feeds every night. For 6 months you gave him growth-hormone shots 6 nights a week at home (his little sister would scream “run Ben, run” whenever you got the needles and vial out). This followed a year of two of a high-fat diet and meticulous recording of every morsel that passed his mouth.

You were relentless in pursuing every opportunity and creating opportunities when they didn't exist.

You went from being a timid mother who respected authority to being a mom who would stand up for her son -- even if it meant refusing to leave the hospital until he had a surgery (after it was cancelled just as he was to go to the OR, because of a nursing shortage).

You were a bulldog with the education system -- learning about all of the legislation and advocating on his behalf. You even had a decision to lay off a special needs assistant reversed one summer -- pulling in the weight of a former deputy education minister.

You drew on the expertise of staff at Holland Bloorview. You talked with one of the best teachers in the school, to learn how to teach a child who was non-verbal to read. Then you got the Jolly Phonics books and you went through that whole program in a painstaking way with Ben. Any of his reading ability is probably due to that.

You sent him to typing class with a worker and you still sit with him sounding out the letters and giving him clues -- e.g. "tuh" for "toad" at the computer.

You filled out a Sunshine Foundation wish application that resulted in him being sent to overnight camp, all expenses paid, last year.

You have sat by his bed in the middle of the night holding his mouth open -- because he had trouble breathing through his narrow nasal passages and sleep apnea that woke him repeatedly. You walked him for hours at night during his early years when he had severe, recurrent ear infections.

You organized his first life plan day -- even though it was very emotionally difficult for you.

You have taken huge risks -- like signing him up at the Goodlife fitness club -- when it would have been easier to not confront what other people's reactions might be to his differences.

You are still a taskmaster to yourself on a daily basis -- writing lists of all the things you need to do with Ben: read Harry Potter, Dolch words, reading games online, have him send e-mails.

You have patience (not always) with his inappropriate behaviours -- picking compulsively at scabs and blowing his nose into his hands.

You are now paying for a reading tutor.

You have spent thousands of dollars buying computers and an iPad and software in the hope that it would be the key to unlocking Ben's communication.

You have spent hours and hours and hours programming voice devices.

You seriously considered moving to the US to get a better education for Ben -- and flew the family out to two schools that offered speech and sign. You talked to immigration lawyers about getting green cards, real-estate agents.

Anytime you heard of something innovative -- you would drive him wherever it was being offered.

You called every local private school that worked with kids with special needs. One principal, after explaining his disabilities and tiny stature said: "Eww."

You found a mainstream camp that might be willing to take Ben with a worker and took the family and a worker up to look at it. The worker wasn't interested in sleeping in tents, so you looked into nearby bed and breakfasts where they could stay. Can you imagine? You were going to pay for your son and worker to stay in a bed and breakfast so he could attend an expensive, mainstream camp? There were no limits on what you would try.

You organized parties to try to get kids over here. Ben would have an annual halloween party as it was his favourite holiday.

You had crazy dreams that perhaps he could be a bull dog breeder as an adult -- so you bought him a bulldog -- even though it was unlikely he could physically control a dog.

You appealed a decision (not successfully) when the provincial schools of the deaf said they couldn’t meet his needs.

In summary, there isn't a time during the last 17 years when you haven't had Ben's best interests top of mind and guiding you around the clock.

There isn't any valid reason to feel guilty that you haven't done enough.

Sincerely, Me xo

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

Monday, May 23, 2011

Gazing Into The Crystal Ball

I need your opinions on something.

Once a child with disabilities reaches middle school and beyond, schools place a bigger emphasis on vocational skills - preparing the children for jobs once school is over. IDEA 2004 definitely supports that:

In “Findings” of IDEA 2004 (Section 1400(c)), Congress found that “30 years of research and experience has demonstrated that the education of children with disabilities can be made more effective by having high expectations for such children,” educating them in the regular classroom so they can “meet developmental goals and, to the maximum extent possible, the challenging expectations that have been established for all children and be prepared to lead productive and independent adult lives, to the maximum extent possible.” (Section 1400(c)(5)(A))

But how does a school district and an IEP team determine what are appropriate vocational skills for a student? I would like to know your experiences, and if your child is too young for you to have addressed this issue yet, what are you expectations for the time when your child is old enough to discuss transition and vocational skills?

Here are some examples:

Do you feel it is appropriate for students with disabilities to have jobs in the school such as wiping tables and chairs in the cafeteria - or delivering mail and newspapers to the teachers - or cleaning up a classroom at the end of the school day? How about sorting utensils or putting toothbrush holders together? Or, learning how to use simple tools like a screwdriver and hammer? Would you like to see your child take care of plants in the school building or clean up/feed pets like hamsters or fish in the school?

Has your child had a great vocational training experience while in school? If you child is older and out of school, did the skills taught in the school contribute to their success as a young adult? Or, did you feel like your child was set afloat at the end of his/her school career with no skills to support productive employment?

What are your dreams for your child as they related to adulthood, employment and independent living? Do you feel your school team shares and understands your dreams?

And finally, are you frightened what the future holds for your child with a disability? I am, and that is why I need help with all these questions...

Sunday, May 22, 2011

Reflections on Your 5th Birthday

An Open Letter to My Youngest Son, B.~


Yesterday marked your 5th anniversary of your birth.  To quote Jerry Garcia, (not that I do often…but), “What a long, strange trip it has been.”  I find it so hard to believe that so much time has transpired.  And yet, in some ways, it seems like I blinked and here you are—a blur of activity and passing for a boy.

So much about you was and still is unpredictable.  You weren’t planned as they say.  Oh, you were part of God’s plan…just not really on my horizon.  I always wanted another child; but after all that time…I just didn’t expect it.  So, when I found out, it should have tipped me off to all the upheaval and change that was awaiting our family.  You were such a surprise that many people didn’t know how to react when we announced we were anticipating your arrival.  You have never been a patient child; and you certainly weren’t the night into early morn that you were born. 

A couple of days before you were born I knew something wasn’t right.  I went from my regular doctor, to my OB and home to bed rest.  I remember so much of that night with frightful clarity.  At 7:00 that evening, I knew something was really wrong.  Your father came in with your big brother from a game of catch and I told him we had to leave for the hospital right away.  In the ER I was checked and hooked up to wires and machines.  My OB went out to the waiting room to tell your Dad I was going to be kept overnight.  However, I knew it wasn’t just stress.  One thing led to another and shortly afterward, we were on our way to a bigger hospital.  What was first believed to be anxiety turned out to be much more frightful indeed.

I recall the ambulance ride…how the nice EMT kept trying to distract me with pleasant conversation.  All the while, he kept checking the monitors—making sure we were both still ok.  I remember being wheeled down the back entrance for the “special cases” that need to bypass the ER entrance.  What awaited us was a quick trip to the maternity ward and a deluge of nurses and more tests.  Your Dad and C. made it down just as the doctor who specialized in high-risk pregnancy issues told me that they were going to have to deliver you right away—to give both of us a chance.  We didn’t even have a half- hour to spare.  NO time to give you steroids to help your under-developed lungs try to breathe.  I remember the sonogram, the blood results, and the 5-minute prep before we were wheeled into the OR. 

Dad and I distracted ourselves from the horror of what we were facing by trying to decide on a name.  Your overly superstitious mother with her Irish Catholic upbringing wasn’t going in that OR without a name picked-out.  We honestly had decided on one…we thought we still had 2 ½ months before you were due to arrive.  In the end, we came up with your name out of thin air—or Divine intervention—just before they came to literally cut you from me.  I decided that your name sounded too important or regal for you to perish.  Not with that name, B…you simply had to live.

I remember the sterile room, the epidural, the anxious doctor waiting for me to get numb.  I remember your tiny cry.  Even then you flailed like you had a million places to be all at once with no real ability to now how to get there save determination.  I remember the nurses taking you from me.  I was given a few moments to see you as your tiny little body was placed on my chest in the recovery room.  I couldn’t hold you; you were simply too tiny.  Ironically, you and I were born at the exact same time, 1:45 am.  Different days…but a unique connection.  And your tiny weight, less than 3 pounds, turned out to be my birth date—the pounds were my month and the ounces the day.  And then you were whisked off to the NICU. 

There, you would stay for almost a week before I was allowed to hold you.  The nurse handed me to you all bundled up in a blanket that seemed to engulf you and all the wires and tubing keeping you alive.  I remember crying and praying.  I asked God to let you live.  I said I would support you regardless of what you grew up to be…I just asked that you live to grow-up.  They wouldn’t give me odds on your survival; but neither one of us really should have made it through that first night into the wee hours of your first breath. 

Two months, in 2 different NICU’s in 2 different states.  Two separate occasions when you “cheated death” according to your Pediatric Cardiologist at a later date.  Two separate times when I thought I would lose you and die from the pain and fear coursing through me.  Two separate times I question God on the wisdom of having some one so minute bear so much of a burden.  Two separate times when I was given more grace than I might have deserved.  Two separate times you amazed everyone.

Tonight, I returned to your bed to gaze down at the wonder of you.  There is so much more to tell you; but not tonight.  There is so much more to your story and so many more chapters to write that I didn’t expect back then.  Tonight, as I fight back to tears to type, I see the tiny little body in that NICU morph into the child who vaguely resembles the Tasmanian devil sprawled in repose.  You have come so far.  I have learned that I have more courage in me that I ever expected, more tenacity and drive, and that when you make a bargain with God…sometimes he has a mysterious way of having you keep your end of the deal.  (Not that God works that way little boy…but you will learn that for yourself.)

No tonight, I simply look at my cub and realize that Mama Bear didn’t know what she was getting; but she’ll help keep you safe to keep turning the cave upside down.  Sleep well little, Prince.  And God give me strength for the next magic birthdays ahead.

Thursday, May 19, 2011

Moving On

We are now 75 days from moving.  A very big move.  I'm starting to think about packing, but there is much to do before then.  We have too much stuff to pack, far too many things accumulated over the last almost two years.  Much of it we no longer have a use for, but is good enough to be reused or recycled.  I've spent much of this month dividing up our belongings this way, and my house is messier than ever.  I crave the piece of mind that an organized house would bring, but there is never going to be enough time for that.

For now, I'm thinking about what needs to be cleared out, and what I need to keep to take with us.

When we moved in, I had a freshly diagnosed on the autism spectrum 2 year-old, and a baby.  Most of our belongings had been shipped ahead to the Panama Canal, waiting for us in a life that wasn't meant to be.  Friends came to our rescue with with loaned baby equipment and toddler toys.  We bought things too, unable to wait for our belongings and trying to establish a home, little realizing that finances were about to get so difficult.  Everything seemed justified at the time, each new toy or piece of therapeutic equipment seemed so vital, but really, it was just stuff.  Stuff that has been outgrown, or no longer serves its purpose.

There were other things I brought into the house too.  Things that aren't bought, but cost us dearly.  Like fear, worry, anger, and guilt.  They carry too much weight.  I'd love to throw them out.  I know nobody else has any use for them either, and I certainly don't need to take them on to the next phase in our lives.   I'm going to at least try, and say that I'm moving on.  Perhaps it will work.

If only we could jettison that extra baggage.  We'd be able to free up space for the things we need to take with us.

The good stuff.  Things I've learned along the way that have proved valuable, invaluable even.  Awareness, insight, and education.  I'd love to pass these items on.  I'd like to be able to hand them over to another family like us who could make good use of them.  Gently used, but still in very good condition.  Things that should never be scrapped.

But there are many more things I also need to pack up to take with us.  I can't live without hope.  I wouldn't be able to make the move without being able to laugh at myself.  I wouldn't go anywhere without the understanding that has been two years in the making, but it still unfinished.

And then the big one: support.  It might come in the form of a friend's email telling me she understands.  It could come from my husband's arms after a challenging day.  Almost every day I'm fortunate to get a comment from someone telling me they live it too, propping me up when times are tough, and sharing the thousand little celebrations of this journey.  It can't fit into a packing case, but it comes with me, and I can't express how grateful I am for it.

These are the things that life me up so I'm ready to take off.

Whether your adventure takes place in your hometown, or the other side of the globe, I hope you only live it with the things you need.  Let me know if you find a way of clearing out the unwanted things for good.  I don't want to keep accumulating junk.

I don't need 75 days, and I don't need to go anywhere.  I'm ready to move on right now.


Spectrummy Mummy blogs about the everyday adventures of life with Pudding (4) and Cubby (2), and can also be found on Facebook and Twitter, where she procastinates instead of getting things done.

For Better, For Worse

Today is Jeremy and my seven year wedding anniversary-- can you believe it?  I certainly can't.  Not to mention the fact that Jer and I have been in a relationship now for ten years, which is a third of our current lifetimes.  Crazy.

I'd like to think that I've learned quite a bit over the past few years.  For one thing, after seven years I've finally stopped accidentely writing my maiden name on checks!  This is a major accomplishment on my part.   

It's funny, because if you look at our family and total up the risk factors (military family, wounded veteran, terminally ill child), the odds of us managing to have a happy, healthy and stable marriage are probably ridiculously slim.  And yet somehow our marriage is the one thing that I don't worry about over the course of any given day.  I think that this is partially because I married an amazing man (seriously, how did I get so lucky?), and partially because we've jam-packed so much drama into the first seven years that we both want to hang around to find out what crazy adventure comes next. 

We've done the whole "for richer, for poorer" bit.  Or at least the "for poorer" part, anyway.  The first year we were married, we lived on a diet that consisted almost exclusively of ramen noodles and dented cans of vegetables from the clearance bin.  I worked two jobs and Jeremy had to sell plasma to keep us afloat.  Things have improved in major ways for us on that end-- Jeremy no longer has to sell his bodily fluids so we can eat-- but we're certainly still not rich in the monetary sense.  I'd like to think, though, that we've accomplished the "for richer" part in non-monetary ways.  As trite and oversentimental as it might sound, I can't think of a treasure marriage could bring us that's more priceless than our son and our soon-to-be daughter.

Goodness knows we've done the "in sickness and in health" part too.  We have way, way too much experience on the "in sickness" part than I'd like, actually.  Five of the seven years of our marriage have been spent in and out of hospitals, in doctor's waiting rooms and in therapy centers.  At this point I've seen significant portions of the inside of both my husband and my son, and I've learned way, way more than I ever expected to know about really obscure medical issues.  Also I can resuscitate people like you wouldn't believe.  I am the one you want to be standing next to if you have a heart attack in the grocery store, people-- keep that in mind.

But you know what?  Overall the past seven years have been pretty great.  I've watched Jeremy rise to every challenge thrown in our way and become a fantastic parent in the process; watching him interact with Connor is one of the great joys of my life.  He already had the fantastic husband (and person in general) part down, so that wasn't ever an issue. 

And the "love and cherish" parts of that vow we took?  I've seen them every single day of our marriage, and they more than make up for the hospital room waits, all the ramen I ate and the checks I had to void and rewrite. 

So happy anniversary, dear husband of mine.  For better, for worse. 

As long as we both shall live.



Jess writes daily at her blog, Connor's Song.

Wednesday, May 18, 2011

Growing Up

“Mom, can you move that stuff? It’s distracting me,” he says. I look over to where he’s pointing and see the three primary colored plastic totes full of toys: one of musical instruments (red), one full of sports toys and equipment (blue) and the third full of dress up clothes and old Halloween costumes (yellow).  Apparently when he’s lying in bed trying to see the University of Oregon scoreboard clock, hung strategically at eye level from his resting point in bed, they are “distracting.”

“Sure,” I say, “I’ll move them. Where do you want them?”

“In my closet,” he says.

“You know, maybe you’re done with them, maybe we should give them all to our friends at the preschool.”

“Yes, let’s do that,” he says.

I drag the three totes out into the hall to be dealt with in the morning. I rearrange things in the room with suddenly too much space. I look over at his three shelves full of books – two shelves with picture books. I glance into the opened closet and see toy garbage and dump trucks. I look around the walls full of fading sports posters and art hung since first grade.

“You know,” I say, “maybe this summer we need to re-do your room. Really make it look like a high schooler’s room. Take out all the things you never use any more and give it a good cleaning. What do you think?”

“Good idea,” he says. “You know, I’m not a kid anymore.”

Then he grabs Elmo, snuggles in next to his three stuffed bears and favorite tiger, curls into a fetal position and closes his eyes for sleep.



Tuesday, May 17, 2011

I Will Remember You

For some people, the bad memories come back the moment they return to the doctor's office where their child was first diagnosed.

For others, the memories surface when they visit a place where they realized their child was different.

For me, the memories hit when I'm filling out paperwork.

I didn't realize this until a few weeks ago, when I sat down to fill out my two year old's entrance forms for preschool.  I got through the beginning questions - name, address, contact information - just fine.

But as soon as I turned the page to the "developmental progress" portion, I was stopped cold.

Instantly I was transported back two years ago.  Back to when I filled out the same form for my middle son Howie.  We had no autism diagnosis then, but we had spent time with Early Intervention and an occupational therapist for his sensory processing disorder.  We were coming off a bad private preschool experience. 

"Does he play well with other kids?" No.  "When did he start walking?" 17 months.  "When did he first start using a cup, knife, spoon?" Um...N/A.  "What are his favorite activities?"  Playing with cars.  "When was your child toilet trained?" N/A.  Again.

The trip down memory lane doesn't stop there. 

I'm quickly thrown back in time again.  To six months before that.  Filing out the forms for Early Intervention.

Holds hands over ears to protect ears from sound? – Frequently.  Is distracted or has trouble functioning if there is a lot of noise around? – Frequently. Twirls/spins self frequently throughout day? – Frequently. Avoids getting messy? – Frequently.

Fast forward again now and I'm hurdling through time and space to September 2009.  Sitting at the kitchen table, answering questions for the developmental pediatrician.

"Did you child seem to lose language?"Yes.  "Does your child seem to focus on one thing more than other kids his/her age?" Yes. "Does your child seem to lack awareness of dangerous situations?" Yes.  "Does your child have difficulties with change in routine/transitions?" All the time.

And now to present time.  To this morning.  Sitting on the floor with the speech/language pathologist as she reviews the Early Intervention procedures.  Except this time, we're signing up my youngest - my two year old - for services.  She tells me his scores are very borderline - delayed but not delayed enough.  But she wants to pick him up for weekly services anyway to catch him up before preschool starts in the fall. 

I have heard these exact words before.  On the same floor.  Remove one kid's name and insert another.  Remove speech therapy and insert occupational therapy.  And here we go again.

"Do you want me to come to the home or daycare for services?" Home. He's not in daycare.  "Will you want to participate in the two year old EI drop off group?" Yes.  But I have to work it around my other kids' schedules this summer.  "Can you sign this white form here?  The yellow copy is yours to keep for your files." Thank you. 

And with that, I have another file started for another kid.  Another thick folder of paperwork. 

And a whole lot of memories to process for the rest of the day.

"I'm so tired but I can't sleep
Standin' on the edge of something much too deep
It's funny how we feel so much but we cannot say a word
Though we are screaming inside oh we can't be heard

I will remember you
Will you remember me?
Don't let your life pass you by
Weep not for the memories" -
I Will Remember You by Sarah McLachlan


If you haven't read MOM-NOS' post here about ASD and PTSD, you should.  Read it here

Alysia Butler is a stay at home mom to three boys, one of whom has autism spectrum disorder.  When she's not buried under piles of paper, she writes about her kids and other things at Try Defying Gravity and on twitter at @trydefyinggrav.

pulling back

Ed note: The following contains some (very) adult language. Although I typically take pains to avoid it in my writing, it was - like it or not - part of the story. It felt disingenuous to edit it out or even to sanitize it. Apologies to any who might find it offensive. 



I don't recognize the voice, no less the woman who is screaming at the top of her lungs. For the life of me, I have no idea what she is doing or, for the love of all things holy, why.

It appears that she is shouting at the man who cut her off. An absurd altercation. He might be wrong, but who the hell cares? Why does it matter? It doesn't.

But there she is, enraged beyond reason, screaming bloody murder in response to his raised middle finger and the words Fuck you mouthed through the closed window of his SUV. And there she is, without so much as a single salvageable shred of control, screaming back at him with everything she has. Screaming, "NO. You're WRONG. Fuck YOU."


I lean into the consonants of the word, beginning with the F, taut and short like a spitting hiss, then landing with all of my weight on the C and the K, searching for relief on the sharp edge of the sounds.

I can see nothing, feel nothing. The only thing I have is rage. I am looking at this man, at the world, through a lens of molten, dripping, toxic rage.

For his part, he is laughing. Laughing at the lunatic whom he's provoked with no more than an aggressive moment on the road followed by an obscene gesture. He is laughing at the absurdity of this woman screaming her pain, screaming her anger, screaming her impotence at him -  from a convertible no less - raw, vulnerable, exposed, completely and utterly out of control. A boiling pot whose lid has finally flown across the room.

And there I am, driving away as he finally turns the corner, heaving and sobbing and searching for a place to pull over - to breathe to escape to run. To figure out where the hell I've been.


Family dinner.

Out of nowhere, I can't breathe. I have no idea why. I'm going to vomit or cry or .. something. I have to get up. NOW. I have to .. I don't know. I have to DO something.

I blurt out the only words I can find. "I have to walk away."

The words have no context. They make no sense. But I'm walking away. I simply have no choice. I can't stay at the table.

Luau is looking at me. He is concerned, confused. I can't say any more than I've said. I just have to get out the door.

I walk outside and try to breathe. I spot a slab of slate in the yard and decide that it has to - needs to - absolutely without question MUST - be moved rightthisverysecond. I pull it up from the grass, stand it on its end and heave it into place with a satisfying thud.

I search for something else. Something I can put into place. Something I can FIX. Physical order in place of emotional order - I'll take whatever I can get.

I think of my girl. How for years her autism compelled her to create lines, rows, towers - order. Like never before, I get it. 

I pick up a chaise lounge and drag it across the lawn. It's awkward to lift - heavy and bulky. I set it down in its new location. I don't like it. It doesn't feel right. I move it again, then one more time before settling on a spot. I'm sweating. I go back for the other one. I line them up. By the time I walk away, they are perfectly parallel.

My family is eating without me. I see Luau through the window, talking with the girls. He's keeping it together. I am grateful. And envious.

I go back into the house, but excuse myself from the table. I head upstairs and find myself in the bathroom. I pace. I don't know where to go or what to do. For a moment, I'm lost.



Friday night via text


A walk in the morning sounds great. Only time I've got is 8am. Can we make that work?

Perfect. I'll meet you in front of the elementary school. I need this!


Saturday via e-mail


Thank you so much for the invitation, but we're unable to attend. I really appreciate you thinking of us. Hopefully next time!


Sunday via e-mail



If it's not too late, I'd like to retract my offer to volunteer as liaison coordinator.

I'll remain a member at large if the group will have me, but I absolutely have to cut back my commitments moving forward. I'm killing myself - literally.

Thanks for understanding.



Sunday night via text


Thank you so much for thinking of us. You're so sweet to ask. It's just not going to work this time, but hopefully in the future!


Monday afternoon via e-mail



I unfortunately need to resign from the Committee, effective immediately.

Our family's commitment ... is in no way diminished ... but I desperately need to take some things off of my plate.

If you'd like to, please feel free to keep me in the e-mail loop and I'll offer input when I can. Either way, I'm never more than an e-mail or phone call away.

Thank you all for your dedication to our kids. I appreciate it and am grateful for it every day.

I hope to be back again (if you'll have me) when / if time allows.

Thank you for your understanding.




Monday night via text


I need your help working on the awards. You in?



Bed time last night, lying in the dark with my ten year-old daughter


"Mama, are you OK? You haven't been very, well, hmm, YOU lately."

"I know, baby. I'm sorry."

"It's OK, Mama. Is life hard?"

"Sometimes, sweetheart, yes. It's been tough lately."

"Is it frustrating?"

"Well, yes, sometimes it is."

"Is it confusing?"

"Hmm, well, yeah, it can be."

"Is it annoying?"

I laugh.

"Often, yes."

She pauses.

"But is it happy?"

I fight tears.

"It is, baby. And Mama's working on finding a lot more of the happy, OK?"

"Yeah, that sounds like a good idea. Cause I miss you."

"I know, sweet girl. I miss you too. And I miss me too. I'm working on it, OK? I promise."


We lie together in the dark. 

"Yeah, cool."


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

She also runs the 
Diary of a Mom Facebook page, a warm and supportive community of parents, friends, adults on the autism spectrum and some random people in her life who cared enough to hit 'Like' and probably now wonder what they got themselves into.

Monday, May 16, 2011

Temporary Impasse

Hand in hand, we make our way through the school hallway after hours.  The halls are surprisingly busy for 4:30 on a Thursday afternoon. We mix and mingle, fall into lines with other after school groups.  Addie and I had just finished our last Daisy Girl Scout meeting of the year.  We chat about how we’ll both be Brownies next year, she as a scout, me as a leader.   Well, I chat and she signs or makes herself clear in other ways, the communication device slung over my shoulder not required for this mom/kid exchange. As a linked set of two, we merge with a line of after school daycare kids.  They must be headed to one of the playgrounds outside.  No longer needing to tune in to a separate kid-frequency, my ears automatically pick up what I should expect by now, but which still delights me; unfamiliar voices gladly greeting Addie by name, asking “Is that your mom?  Did you have Daisy scouts? Do you remember me from the library? We were book buddies last year, remember?...”  I smile and listen while I let my well-known, non-verbal first grader choose to respond or not respond.  These kids know her.  They know she will not answer in words, but in some other way, and they will accept that answer.

Abruptly, my happy fuzzy sunlight feeling is chilled and shaded over as one repetitive voice gets louder and louder, surpassing the din. 

“She looks lazy.”

I search the knot of kids we’re stuck in to find the source of the voice.  He is looking at me and clearly expects a response.  I know how this works. I am either to agree or disagree, with explanation.  But  I am certain I am not hearing his words correctly.  He is probably about 7 or 8, not much older than Addie, if at all.  He says it again. 

She looks lazy.

I am considering his lisp and trying to figure out what words can turn into “lazy” with such shifting of the sibilants.  As I run through my short list he says it at least three more times, impatient for my acknowledgement.

Another voice near him matches his volume in retort, “She looks like a LADY?”  To which the first boy simply responds in the exact same tones, while looking at me “She looks lazy.”

The second boy disregards this confirmation and continues to counter each of the first boy’s remarks with a definitive “She looks like a LADY.”  He, like me, cannot understand what the first boy could mean by his words.

I finally gather the words to ask just as we descend the stairs.  “What do you mean?  How does she look lazy?”

“I don’t know.  She just looks like she’s very lazy…”  His voice trails off as the wave of kids pushes him to the door.  He races to the playground out of sight.

While holding Addie’s hand in the middle of the stairs, I stopped for a moment to commit some things to memory, much like one might etch a license plate number in: his stocky frame, the curl of his dark hair on his forehead, his round shiny cheeks and his matter-of-fact brown eyes.  Yes, got it.  I will remember him when I see him again. 

Because I need to see him again.

I do not understand anything about his position on my daughter.  He clearly has one and is making it known.  But it is mistaken.  

And I can't have that.

What did he mean she looks lazy?  As though her inability to speak is a choice?  As though she walks slower than everyone else because it’s too much bother to fall in line?  Is she not at 1st grade reading level yet because she declines to do the work?

I can manage many other mistaken impressions: that she is not smart, not valuable, cannot be a friend, should settle for being stared at, but not talked to.  I can teach to those and set the connection between other kids and Addie on another path.  Because I know what those impressions mean and how they got there.  But I just don’t get lazy.

I need this boy to help me understand.  I never heard or anticipated that one might think Addie’s differences could be attributed to a laissez -faire attitude about all she attempts.  I need to study how to uproot such an impression, how to teach it away.  Because he is just a boy and curiosity, rather than ignoble intent, was at the heart of his repetition, I would not use what comes to mind first - that she works harder than he does at every single thing she attempts.  That she puts more effort into asking for a drink of water than he does in an entire math period.  I would not want to share how she learned to walk late and then had to learn again after she had surgery on both feet.  It would be too much to share with a 2nd grader about the 6 day precarious battle she fought and won with pneumonia and a collapsed lung.  I don’t think I’d want to relay how little she sleeps at night, how often she is sick, how every minute of every day she must prove herself to be worthy.  Worthy of acknowledgement, of tolerance, of a hello, of kind words, of friendship, of respect.  I’m just not sure the message would reach him about how her absorption of insensitive, degrading and ignorant comments (much like his) makes the word “lazy” irreconcilable with who she is to me and anyone that knows her.

That’s all too much for a child.  But I will find this bold young seedling.  And I will ask him to help me understand better what he sees when he looks at my girl.  Then I will help him understand, befitting a second grader, how to see her more clearly.

Sunday, May 15, 2011

A Place Without Edges

I hear so many stories of parents of kids with autism who think twice before taking their children to certain public places. I do it myself. There are lots of reasons for this—but chief among those reasons, especially for parents whose kids don't appear to have a disability—is judgment of their children's behavior by the Nosy McBusybodies of the world.

I recently took my son Jack on a four-day trip with his special hockey team to an international special hockey tournament. There were a lot of things I was worried about in advance of this trip: I was worried that he would throw up all over the team bus on the nine-hour drive to the tournament; I was worried that he would be overwhelmed by the tournament and number of games; and I was worried that I would lose him at a rest stop on the New Jersey Turnpike.

The one thing I wasn't concerned about was being judged for having a child whose behavior is outside the lines. 

That is the advantage of hanging out with people in the disability community. Even though each parent and each child who went on the trip were wildly different, we all had a common base and we all got it. I can't remember the last time I spent a chunk of time with such an accepting, nonjudgmental group of people. I don't know if I ever have.

I found myself overwhelmed with gratitude over and over during the four days of the tournament, making me the weepy doofus who spent the trip with tears in her eyes. Honestly, however, it can be startling to find yourself in such an embracing, encouraging, nonjudgmental (and fun!) group.

See, the world can be hard. For parents whose children experiment with the world by occasionally tripping strangers or who have meltdowns when lights are too bright or noises are too loud, the world can be not just hard, but sharp as well. It is rare to find a place without edges. It is even rarer to find yourself in a place full of sensory pitfalls and stressful situations and to know that there are 30 people standing next to you to give you a hug, tell you a joke, shoot you a smile—or not see anything strange at all.

A friend of mine, also a special needs parent, came to watch a game when we were in Boston. I tried to prep her a little by sending her a message: "Bring coats and prepare for sensory overload, but also know that no one here will judge you." (I might have needed that message more than she did.)

The hockey tournament was amazing, inspiring, and I am so grateful to have gone. Still, the four-day trip was tough on Jack and me. Being with this group of people didn't erase my son's inappropriate behavior, nor did it make it easier for him to regulate himself. It was still frustrating to chase after a seven-year-old pushed past his limits or unwilling to skate in his tournament game. Yet all of this happened against a backdrop of compassion and understanding.

I am very lucky in that I have an extensive online community of special needs parents and supporters who make this sometimes difficult journey infinitely easier. I wasn't prepared to find the same thing in real life. I hope that all special needs parents are able to find a community like this. I wish it weren't such a rare thing.

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.

Saturday, May 14, 2011


I am asked to be flexible
So I bend this way and that
Stretched to the limit

Between too much and not enough
Lover and fighter
Parent and therapist

Between reason and emotion
Fact and fiction
Science and faith

I am stretching between wife and mother
Better and worse
Me and us

Between a boy and a girl
Four and two
One with Autism, one without

Between joy and fear
Hope and despair
What is and what might be

I am bending until my back hurts
And my heart aches
I am bent

But never broken.

Friday, May 13, 2011

Spring Into Action

The foundation of Chinese philosophy is based on the idea that human beings are a part of this universe and integral to the dynamic flow of nature just as animals and plants. For that reason, living in harmony with the seasons is a key component to health. According to Chinese Medicine, the universe is forever changing and to be at our best we must continually adapt to these changes. In Chinese medicine, the season of Spring is
associated with the Wood element.

Attributes of Spring:
Element: Wood
Color: Green
Nature: Yang
Organs: Liver, Gallbladder
Emotion: Anger

The Wood element is a good one for Hopeful Parents. Wood exemplifies the energy of growth, change, and pushing through obstacles. It represents a very active energy that allows for a lot of movement and progress, both internally and externally. When constrained, it is also the energy that contributes to frustration, anger and stress. Like the Wood element, anger can make us hard and unbendable - like the tree that snaps in a strong wind instead of swaying. So what can we learn from the Wood element? The key here is flexibility. Stand tall, plant your roots deeply, and remain flexible rather than rigid so you don’t snap. Think about the experience of anger – it is often the feeling of snapping that occurs when frustration and obstacles thwart us. When we believe that we have more options, we have increased patience and the very necessary component of Hope.

Use the new energy of Spring to return to projects that deserve your attention. Spring is a natural time for action, change and rebirth.

Prom Report

It's the nature of special-needs parenting, I think, to dream of and strive for real-world goals for your child, only to realize, when those goals are attained, that you were perhaps not quite ready. The child you worked so hard to get on his feet can suddenly get into everything. The child you worked so hard to get talking just will not shut up. Potty training means that now you have to worry about your toddler touching things in public restrooms and putting his fingers in his mouth. That inclusion class you fought for comes with social expectations for moms that you were happily oblivious of in the cozy self-contained classroom.

And so it was that my son went to his junior prom last month, a day that I and the moms of two of his special-ed friends worked hard to make happen, planned for, made phone calls, discussed endlessly, strategized about. We sent my son to school with a whole bunch of cash to buy tickets -- something that, right there, I thought I would never do. We figured out their outfits, bought flowers, talked to them about what it would be like, made sure there were suitable chaperones. But unlike school dances that we'd gang-chaperoned in the past, this was one we couldn't go along for. We thought they could do it. But could we?

Going to our homes afterward to wait from 7 p.m. to 11 p.m. in our own private worry was out of the question. So the three helicopter moms went together to drive the three prom-goers to the prom site. One mom ran in with them to make sure they found the right room, got an eyeful of how much more dressed up the other kids were than ours, and added another worry to our supply. From there, in our heightened state of trepidation, we had a mom's dinner out and a stroll of the mall, checking our phones compulsively for calls from the kids, wondering together what they were doing and how they were doing. Were they in less of a tizzy than us?

The call finally came around 9:30, a flurry of calls to multiple phones. After two-and-half hours, they were ready to go; the eating part was finished, and all that was left was the deafening music and crowded dancefloor. As my son's friend called on her cell phone, he could be heard in the background yelling "Rescue us!" That call was followed by one from a chaperone, saying essentially the same thing. And so, we did. We pulled up in the minivan, the same mom ran in to fetch them, and they returned to our care with sore feet and full stomachs and ringing ears. We decided that two-and-a-half hours of such a grown-up affair was a success, and went home very happy to have survived the evening, all of us.

The senior year ahead is going to be fraught with this kind of stuff -- events that we want our kids to be ready for, things we're not sure they are, things we know we aren't. We'll pick the ones that have the greatest opportunity for success, cross our fingers, huddle together to pool our worries. It's important to give them their wings, it's wonderful that they've come so far, it's inspiring that they're finding their little inroads of inclusion. But secretly, you know, some small part of me can't help but think back nostalgically to those times when I could safely strap him in a stroller and always know where he was.


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.

Thursday, May 12, 2011

IEP from Heaven

I just attended our son Ethan’s IEP meeting a few days ago and truth be told, I’m still riding a wave of happiness from the results.

The first school district we lived in was the most pathetic experience. Ethan was turning 3 and aging out of early intervention services. The district arranged for the evaluations and his first IEP meeting. The evals were a total joke. In each instance, the adult spent the entire time interviewing me and paid no attention to Ethan. If there was any interaction, it was minimal. Then I had a home visit from the school psychologist who called to say she’d like to meet Ethan and see him in his home environment before the IEP meeting. That was just code for “I’d like to come to your house and prepare you for the meeting in which we want you to lower your expectations for us as well as your child.” She actually said that in education terms, we don’t talk about what’s best for the child, because it’s not a perfect world and best case scenarios just aren’t realistic. Then came the IEP meeting, which we held at our house. Only 2 people showed and they only managed to bring 3 pages of the IEP document. I was livid! What universe are they living in?!

We moved to a new city later that summer. I met with Ethan’s new district and was immediately impressed with their professionalism and organization. They seemed to know how to evaluate and they had 13 people sitting at the table when it came time to write the IEP. I later realized that this was probably a set-up to intimidate me out of asking for the services we wanted for Ethan. They refused to send him to the deaf school for preschool (he’s deaf) and I appealed the decision. Fortunately we didn’t have to wait for that decision because we found a home in another district 15 minutes away and moved again.

Now we’re living in a district that I think of as being in a league of its own. They are known for their excellence in special education and have a program for children with autism that has been a game changer for our little guy. Yes, he’s autistic, too. He’s in a social communication classroom with teachers who’ve had extensive training in working with this population. He has a sign language interpreter with him at all times and is doing tremendously well!

In preparation for the meeting this week, I got out my book titled How Well Does Your IEP Measure Up? It’s written specifically for autism and as I flipped through the areas I had highlighted, I began to realize that his team has already been writing goals as the book suggests. In fact, I couldn’t find anything in this book that they aren’t already doing, and doing really well.

I started to read about ESY, or extended school year, and realized that I needed to be advocating for this for Ethan. I read up on the law and court cases from our state, just to make sure I was well versed in it before bringing it up at the meeting. To my surprise, his team had already discussed ESY and planned to offer it. This is something that most districts will try to deny and many parents end up going to due process over if it’s something they want badly enough. I wasn’t preparing on that level, but I also wasn’t expecting them to OFFER it! Our community continuously votes down the school levies and the district is in serious fiscal straights, yet they are offering us ESY. I think that’s remarkable.

To say that we’re feeling indebted and grateful is quite the understatement. I don’t take this for granted for a minute and I wish for nothing more than those of you reading to experience the same level of commitment and care from your schools as we have. Our kids sure do deserve it. 

Decisions, decisions

Living in a state of flux is so very hard for me, which is to say I probably have some good company in this regard.  Our house has been for sale for just under a year and it's been hard not having an end in sight to our moving process.  But, this week we finally decided on a plan B and will set it into play next week.  We are still hoping for an offer to come in the next couple of months because we have had a lot of recent house showings but decided to start working on plan B next week.  And I feel great!

The amazing thing is that just making the decision - even if it is not the ideal one - feels so liberating.  I find this is also true when deciding on treatment or health care for our daughter.  I tend to be the type of Mom that goes overboard on researching treatments - reading journal publications, consulting with our doctors, talking with other parents, praying for guidance.  When I'm deep in the process of sorting through the information I often feel overwhelmed and unsure.  And because the plan usually entails spending a lot of time on the phone with our insurance companies for approvals it just adds to my sense of pressure to pick the right path (no way I want to do that more than once!).

There is a technique that I've used to make my decision making process easier.  It's a process I like and I've pulled my husband into it because we make decisions for our daughter together.  The process starts with asking if we make {decision A} and we're not satisfied with it, what is the worst that will happen.  I also ask if we choose not to pursue {decision A} would we look back in the future and wonder what if we chose {decision A}.  Finally, we ask if we didn't choose {decision A} and decide at a later time to pursue {decisionA} would it still be an option?  We ask the same questions for the other top contenders.  Sometimes there is a clear decision, sometimes there are a few appropriate options.  But, even then, there is usually one that fits better into our lifestyle, budget, schedule, etc.   

I know there are as many decision making processes as there are decisions to make, but this is the one that works for me us.  And, I always find, that once the decision is made I sleep a little easier and breathe a little better.  That, and there is always another decision to make coming up just around the corner.....

Wednesday, May 11, 2011

Seeking Personal Secretary

I sat with a roomful of at least 8 wonderful women yesterday for Sylvie's quarterly medical care conference.  Her doctor, 2 nurses, her PT, her current and future speech therapist, our case manager with the Department of Public Health and three PCAs were all there. I'm eternally grateful that my daughter's pediatrician calls these care conference updates.  A chunk of yesterday's meeting was spent talking about Sylvie's transition to kindergarden.  The school hasn't had a child in a wheelchair for a long time--you could hear the nervousness in the voice of the school staff member.  She later told me she could tell I was a strong advocate for my daughter (Hello? She is my daughter!).  Another transition. Another opportunity to rally troops to learn about my daughter. I want to write more about the upcoming IEP, the Open House to the girls new school, the search for new PCAs this summer, but I'm too tired.

All my PCAs are college students, and they are in the midst of finals.  I'm juggling everyone's schedule on a google calendar that is carefully orchestrated between 5 adults, 2 children, and 3 jobs.  

I need a personal secretary! 

Tuesday, May 10, 2011

You Gotta Have Friends

I have been thinking a lot about Jacob and friendship lately. It’s the one thing I swore I would “fix” this year and just haven’t, in any way shape or form. I recently wrote a post about how Jake’s best and only friend is a stuffed Curious George.

When Jake didn’t care about friends it made me sad, but now that he’s aware, actively seeking friends, wants other kids to play with him? It’s damn near breaking my heart on a daily basis.

I know for a lot of kids on the autism spectrum, it’s often more of a problem for the parents than the kids themselves, but Jacob frequently expresses his desire for friends. It’s just that he has bucketfuls of social desire mismatched with a thimbleful of the social skills necessary to make and keep them. Big sigh. He’s learning, but it’s a glacially slow process and he and I are growing frustrated, impatient.

It’s also not quite 100% true that he never plays with other kids. Jake has yet no friendship with a same age child that has the possibility of becoming long term, but he does from time to time play with the much younger siblings of his twin brother Ethan’s friends.

And these 2 and 3 year-olds love to play with Jacob: a “big kid” who will give them the time of day, unlike their older brothers who disdain them for their “babyness” much the same way Ethan dismisses Jake. So Jacob does have playdates with Caroline, a delightful 3 and 1/2 year old whose play level actually matches Jacob’s at the moment.

The sad thing is, though, that I can’t let him get too attached to her, because I have been warned that within a year, possibly less, her play will become more complex and verbally imaginative, move beyond him. That, certainly by the time she hits 5, enters kindergarten, she will soon learn to judge, will become aware that Jake is “weird,” begin to reject him as a playmate, turn exclusively to her classmates instead.

But for now? It can be magic. But not easy magic, they have to be watched carefully, very carefully. Because Jacob? Completely unaware of how big and strong he is, especially in relation to little three year-olds. And Jake’s play is often physical, his love enthusiastic and dangerously ebullient. His hugs? Could squeeze the stuffing out of someone, unless carefully monitored. So even when happily on a playdate Jake needs (exhausting) intense one-on-one supervision.

And then there is his twin brother, Ethan. I have written about their fractious relationship many times before; in fact, most recently in last month’s HP post. To say that this is not what I had envisioned when told I was carrying twin boys would be an understatement of epic proportions. Some days are worse than others, but some are, occasionally, nearly good.

My Mothers Day gift from my family had been a weekend away from them, so on Sunday I was busy returning from Boston for most of the day. My husband had work to do, so after a morning of male movie bonding (Thor, naturally) our wonderful babysitter Brandi took over.

While Boston was experiencing scattered heavy showers, it was a perfect spring day in New York City, so after a lovely lunch at the local Shake Shack (where they keep a separate fryer for gluten-free fries and make sure the “no bun” burger goes nowhere near gluten, too), she brought them to an outdoor basketball court. 

One thing Jacob and Ethan share at this point in their lives is a love of basketball. And on Sunday, they actually proceeded to play together for hours. Without Ethan screaming that Jake wasn’t playing right, without Jake grabbing the ball and running away with it, maniacally laughing.

This was nothing short of a Mothers Day miracle. Brandi, realizing this, texted me about it. I replied: “Take pictures!” Which she did, and e-mailed them to me, see:

So the next time Ethan tells me he never ever enjoys being with his brother, and that they just can’t spend any time together, I have proof that sometimes it works out.

And I came home with hope, lightening my heart. A lovely Mothers Day gift, indeed.


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.

Annoyed at the Neurologist and Other Tails

Ripe with PMS, bloated, irritable and pointed toward a sour attitude regarding the day's activities, I sat down for a thick slice of chocolate cake. I sat down, that is, until I got up. The write-up of my son's most recent neuropsych evaluation lay before me on the kitchen counter, and I didn't want to forget to bring it to the neurologist visit later in the day. So I took it to the car...

...only to find a baby sparrow stuck to one of those super sticky ant-catchers that Terminix had placed in our garage. The bird flapped in a wild panic, and with each flap, the sparrow further secured itself to the adhesive.

Why? I thought. Why does this kind of crap happen to me? With ten minutes and a chocolate cake all to myself, of course there is a baby sparrow adhered to an ant trap in my garage.

I place the glued-on sparrow into a shoebox and bring it to the vet. Something about warm water and Skin-So-Soft, and the vet goes to work. "No, I can't stay," I say, irritated that I have replaced the consumption of chocolate cake with a trip to the vet for a bird that doesn't belong to me, "I have to pick-up my son from school. Let me know how it turns out."

At the school yard, my son notices an ant scurrying free, unadhered, wild on the pavement. "I must save it!" he says, believing the pavement must be too hot for its feet. I'm not lost on the irony of the unstuck ant. It takes him a good two minutes to finally catch the ant between his cool-salty fingers. He drops the ant into the long blades of grass saying, "Goodbye little ant. Be free."

And so we take an hour's trip to the neurologist. What did I learn at the neurologist's office? Absolutely nothing.

My son had a "seizure-like" event about a month ago. "Early April," I say.

"Late March," she says, scrolling through the electronic chart. "Right? I know I'm right."

"Fine, late March."

"Here it is. March 24th is when you called the office."

"Then it was the 23rd."

"It was."

Good, glad that's all clarified. Not glad that was the only thing clarified.

The neurologist wasn't sure my son had a seizure because she wasn't there to witness it.

"Well, he was unconscious," I said.

"How do you know?" she asked.

"Because I was there," I said in my outside voice, followed by "idiot," with the voice between my ears.

The chick with all the letters behind her name and the academic training to back it up was talking down to me, a pedestrian in her world. An ant that needed saving, that needed to be put back where I belonged.

"Let's say you're right," I tell her. "If it wasn't a seizure... what was it?"

"Behavior," she tells me. Behavior. As though my son "behaved" unconsciousness, a fake-out.

"I'd give you behavior," I say, "except that in the arsenal of my son's behaviors, feigning unconsciousness isn't part of his weaponry."

"It's possible then, that we don't know. We may never know," she says.

"Considering he's done this twice--"

"Only twice," she says.

"Twice," I say. "Aren't you curious?"

"Sometimes kids have unexplainable behaviors."

And it was left at that. Not her department. She performed her reflex tests and shined a light in his eye, and we packed up our things to go home.

We're either going to be one of those families you see on 60 Minutes who kept searching and searching for answers for their child, and due to their own tenacity, they find the answer or, I thought, we're not.

The fighter in me wants to be that family on 60 Minutes. I want to be that mom that comes on and says, "We went to see every single specialist you could possibly see and had absolutely no answer until one day..." And then I would go on to tell about this wonderful, new, strange discovery that provided us an answer, and that could provide an answer to hundreds and thousands of people. These are the fantasies of moms like me.

But the truth is, the reality is, the probability is that will never be the case.

As we drove home, the seagulls flew over the blue waters of Lake Michigan, and I thought,

There are no answers,
only birds on a journey
against a horizon of infinite possibility.

Be free, birds.

Sunday, May 8, 2011

Our Tribe

I was up before my kids this morning, super excited that I had an hour of uninterrupted time to write my post for Hopeful Parents.  At the end of that hour my computer crashed and I lost the entire entry. 


SO instead of re-writing it under rushed circumstances, I figured I would wait until I had another hour of uninterrupted time. 

Who knows when that will 

Below is a post I wrote in February about what I like to call our tribe :)

Happy Mother's Day

"A Special Needs Tribe"

Every second and fourth Friday at my clinic is our epilepsy clinic, these patients have seizures that require the care of two world-renowned epileptologists. 

It isn’t a coincidence that a lot of these adults are developmentally delayed and due to tragically long wait times in our clinic, I get a lot of time to get to know the caregivers and parents of my patients. 

I get to speak with moms that have raised their wonderful children in a time when there was little to no support, I envy their strength.  We compare stories, services, bad times, and good times. 

I always end our conversations by telling each mom that she is doing an amazing job, each time I say it, one or both of us cries. 

Every second and fourth Friday I am surrounded by people who ‘get it’, they get the good days, the bad days, the fear, the love, and the hope. 

My mission on these days is to be a shoulder, an ear to vent to, and to let them know that I will make sure that their children are medically taken care of.

I ’get it.’ 

We are a tribe of parents with children that have special needs.

After these clinics my level of emotional exhaustion varies,and it is always directly connected to what is going on in my home. 

I found myself in tears yesterday as the mother of a young man with severe autism and I shared stories of  ”when one thing seems to be resolved, another thing gets thrown at you.”

Another mother that has two boys with Downs Syndrome started crying when I told her that her boys are the highlight of my day when they come in and that she has done a great job.  She tried to brush off the compliment by saying “she just does her best” so I grabbed her hand and told her she that has raised two amazing young men (seriously I love them!). 

We hugged and cried for a long time.

We need to hear this.   The dark times are so dark for most of us and even the wonderful times seem to be tempered with a sense of foreboding.

When I got home after workI logged onto Facebook and  Beth had reposted a blog entry by MOM-NOS here on Hopeful Parents. 

 Just in time.

ANYONE who knows ANYONE that is raising a child with special needs, should read it.


Here is the link.

Thank you MOM-NOS for being so courageous and helping the rest of us put words to what we feel.  You have done something amazing.

Shivon can be found over at her blog "My Brain Wants To Go Home"


It's Mother's Day today,  a fact that would be difficult to miss by anyone who lives in North America. It's the day when we celebrate the woman who gave us life, the women who care for us, the women who we trust to meet our needs. That being said, celebrating this day is really challenging for some people. Not all of us had mothers who met our needs or loved us or cherished our every moment, many of us mourn the losses of the women who took care of and some of us were not privileged enough to have mother's who noticed us or cared about our achievements. For others this day is hard because they are not the mother they thought they would be or they are not yet mothers even though they long to be. 

In our family we have our own sets of challenges today because my kids are adopted from foster care and I am their 5th mother.

I have been dreading this day for weeks because I know it will be hard. We keep things pretty low key and try hard to keep our routines as close to normal as we can. My husband took the children to buy a gift yesterday, nothing huge, nothing that states that I am the world's best mother, just a little gift to acknowledge the day and all that I do as their Mom. They make me cards and we celebrate my role in their lives but it's a fine balance between celebrating me and acknowledging that there were others before me and that they mourn the loss of those mothers too. 

Last night we were watching a movie together, Fudge was complaining that he was not feeling well and so I moved over to  the couch and sat with him. He rested his head in my lap and I stroked his hair, after awhile I began to cry. I cried because this wee boy of 9 has been hurt, hurt by the woman who was supposed to love him and cherish him and value him as a human being and yet she didn't. Instead he was left to fend for himself, to be unsure of who would meet his needs and who would take care of him. As a result his brain did not develop in the way that it should because he did not attach to another human being as a young child. His life has been forever altered by her choices and by her inability to put his needs before hers. 

It was the first time in 3 years of mothering Fudge that he actually relaxed enough to let me hold him for longer than a minute or two. It took being sick and miserable for him to relax enough to let it happen but it did and that was the best gift I could of received but it made me sad because no child should have to endure what he has endured. Children should be loved and appreciated for who they are.

Neglect, loss, poverty, lack of skills, pain and illness are some of the many things that make today so very hard for some people. If today is hard for you because of your relationship with your mother or with your children's first mother or because you long for things that can not be, know that you are not alone. Not everyone celebrates this day the way that our commercialist society would like you to believe, some us celebrate the smallest of achievements with our children and that is better than any card or gift that can be purchased to tell us that we are a good mothers.