Brother Seth

 

My son has a keen eye.

"Mom. I think so & so has autism," he says, on our way home from day camp."

"Why is that, Seth?"

"Because he is really smart, and sometimes he has a hard time."

"In what way?"

"Well. He screams when he gets overwhelmed. And he flaps his hands."

It's not the first undiagnosed (or undisclosed) child Seth's radar has gone off for. Like most autism moms, he can spot one a mile away.

I would trust my son's diagnostic skills over those of any pediatrician. After all, he's had a seven year residency and he loves a person with autism. 

Seth gets it. He is kind. He'll go the extra mile to include this boy. I've seen him work. He'll let him have the swing to avoid a meltdown. He'll point out to others how smart this boy is.

In an ideal world, all kids would be appreciated for who and all they are. For now, kids riding under the radar are lucky to have autism sibs floating around in their midst.

 

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. Her work has been featured in Literary Mama, The Imperfect Parent, Age of Autism, Cool Cleveland, The Bark's blog, and will also appear later this year in the professional occupational therapy publication Sensory Integration Special Interest Section (SISIS) Quarterly Newsletter. Her daughter Riley, ten, has Asperger's. Michelle blogs at www.fullsoulahead.com.

 

 

The Birth of a Dad-vocate

 

I’m standing in the middle of room 344 of the Holiday Inn, Belfast, and I catch a side glimpse of myself in the mirror.  And I’m struck.  It’s one of those Doppelganger moments.  A moment of looking at myself, knowing it’s me, but also knowing it’s someone different.

There are some obvious reasons why I might have done a double-take at my own image. For one, I had recently grown a beard, and wasn’t used to seeing my face this way.  Also, I was considerably jetlagged from my transatlantic flight, and could be forgiven for a momentary brain-lapse. 

But I think there was something else going on here.  It wasn’t just my new facial hair that I was getting used to, it was a shift in my identity. 

I was six thousand miles from home, and had just returned from the opening ceremonies of the 2009 World Forum on Early Care and Education in Belfast, Northern Ireland.  Six-hundred-fifty delegates from 75 nations had gathered to advance the cause of young children everywhere.  I had traveled there to present Autistic-Like: Graham’s Story (my film about my quest to find answers for my special needs son) to a group of education leaders from around the globe.  And it was quite a moment for me. 

Prior to making the film I’d been a guy in a funk.  A young first-time dad overwhelmed with the grief of my son’s diagnosis (first with autism, and later with sensory processing disorder) and stressed-out from the demands of being my son’s best hope of finding the right help. 

Just a few years before all that, I was a carefree southern California bachelor, pursuing a film career writing (okay I’ll just say it) stoner comedies.  It’s fair to say I was struggling to find a larger sense of purpose in my life. 

With the whirlwind of my son’s birth, his diagnosis, our dogged pursuit of intensive therapies, then scrambling around to make a film about our experiences, and then scrambling around to get the film out there, I hadn’t taken a breath long enough to take stock of the changes all this had wrought in me.  Maybe that’s why, far from home and over-tired, when I glanced toward the mirror, I half expected to see the old me, the So Cal kid, the hang-loose guy.   

But he wasn’t there anymore.  In his place was this new, weirdly grown-up bearded guy.  A guy whose experience as a dad morphed somehow from getting on the floor to do play therapy with his son, into doing presentations at international education conferences.  A dad who had almost accidentally become an advocate.  And there it was. This amalgam.  The dad-vocate. 

Not a dad on a mission (I’m way too Forrest Gump for that), just a guy with a sense of purpose.  Someone willing to follow the breadcrumbs that led away from the life I thought I wanted, toward the one that was inviting me to be helpful. 

The reason I write all this is that I now realize that my shift is part of a trend that probably began a while ago, maybe forever ago, I don’t know, but seems to be gathering steam. 

Most of us know about the famous special needs dads like Joe Montana and Doug Flutie, each of whom started foundations in the wake of their child’s autism diagnosis. And Rodney Peete, the NFL hall-of-famer, who wrote the book Not My Boy! about his journey with his autistic son.  And you might be aware of the less famous but previously accomplished dads like movie producer Joe Shestack who founded Cure Autism Now, and Peter Bell, who left a marketing career to run CAN.  Or the lesser-known dads like Barry Neil Kaufman, who founded the Son Rise program. 

But what I’ve noticed popping up all around me are the everyday dad-vocates.  Like Mike Fields of Atlanta, father of a boy with autism, who went back to school to become a Floortime therapist.  And Randy Abrams, whose daughter has autism.  He founded the Autism Free Zone (www.autismfreezone.com), a sort of ‘craigslist’ for families with special needs children.  And Bruce Brownstein, father of a boy on the spectrum.  He’s developing a computer-based social skills program.  This is just a small sampling of the new wave of dad-vocates -- fathers putting their creativity and professional skills to work on behalf of the larger community of special needs families.

Less overt, but critically important are the countless dads who shoulder the responsibility of earning the five- and even six-figure annual sums for their child’s therapy.  These are the committed advocates for one.  And they count too.

There has been a lot of talk lately about dads in the special needs world, most of it pointing to the disappointing number of dads who check out of their families in the wake of a diagnosis.  We’ve heard high profile moms call-out dads who struggle to accept their child’s condition, lose the battle with their grief, and ultimately divorce their wives.  This epidemic within an epidemic is troubling, and not enough is done to address the Dad Crisis specifically.  But there’s another story about dads that hasn’t been much talked about. It’s the dads like Randy and Peter who gave themselves over to the experience of being a dad of a special needs child in such a way that it remade their professional lives as well as their personal ones.  Guys who took an experience that changed some things, and chose, in its wake, to change everything.

As I prepare to leave Belfast, feeling deeply involved with the efforts all over the world to improve the prognosis for children with special needs, I realize what a gift all of this has been to me.  It has given me a way to be a part of something bigger than myself. 

When I arrive home, Graham is in the middle of flipping his lid because dinner included penne pasta and not curly pasta, and mom has had her fill.  All the romance sucked out of my grand return, I’m reminded not to get ahead of myself:  my most important job is here, helping my own family with the little things.     

not a burden

This weekend we are down one child, as Noel has gone off the cabin with his grandparents. I miss him fiercely, which I find somewhat funny, as five minutes before they picked him up I was beyond annoyed with him.

Similar to Ellen's post a few days ago about getting out and having a relaxing meal with one's typical children, we are getting a solid taste of what it would be like to have only Holland. And it sure is sweet.

If I set aside the missing him (not easy, I tell you) and focus only on having to be mommy to Holland, life is a cakewalk. One (fairly compliant) child to dress in the morning. One meal to coax into one mouth. One person who wants cuddles, rather than two who are arguing over the limited space in my lap. No conflicted feelings about giving uneven amounts of attention. And the big things - no epic emotional meltdowns. No sensory seeking acrobatics in the living room. No concerns over switching up the routine and causing someone major anxiety.

We can all admit this: It is easier to have a typical child than it is to have a child with demanding needs. It is easier to have one child than it is to have two. Feel guilty about it if, if you must, but also, relish the mini break. It will make a you better parent in the end.

But what is really striking to me is how 22 month old Holland is taking in this brother free weekend. While I would imagine it would be so nice (play with ALL the toys! get all the attention!), she pauses several times in her day just to call his name. To round a corner to see if he might be there. She wants him to be there. She misses him.

The other day, in the midst of a meltdown, Holland attempted to comfort Noel and earned an unforgiving shove from him. She flew backwards and fell hard. She was so upset by this that she cried until her breath was hard to find in between racking sobs. I cried with her, because I felt so overwhelmingly guilty. In that moment, I had done this to her - I chose to have a second child, and so I gave her this burden. A brother who was unpredictable at best, sometimes violent, emotionally unstable and rigid in routines. I gave her a sibling who she would feel she had to care for, all the days of her life. And it was so unfair of me to do this to her. (Set aside that when she was born we were still a year away from diagnosis)

But the reality has come clearer this weekend. In truth, she adores him and idolizes him and would be lost without him. She keeps calling his name, looking for him in empty rooms. He is not her burden, he's her brother. He's all she's ever known. Sure, when she gets older, she may resent him, however briefly. She may wish for a typical brother like the ones her friends have. She may be embarassed by him or annoyed by him, but at the heart of things, she has never had any other expectations for him, like we had for our newborn baby boy. Holland has never thought a brother might be any different than the one she has. 

I have to admit, I'm a bit jealous.

 

Sorry to Bother You...

Ed.'s note: Hopeful Parents received this post in an e-mail message tonight in an effort to reach out to someone, anyone. The author gave me permission to share it here. I hope you'll offer her your comments.

 

...I just wanted someone to read this. Not neccesarily to do anything with, but maybe just to know someone read it, and that I'm not entirely losing it.

I have 5 children. 7, 4, 3, 3 and nearly 2. Heath passed away when he was 3 weeks old - he would be three now. He's one of my twins. I wrote this to explain (or try to) something we call The Thirtieth Day.

I *am* a hopeful parent - really, I am. Sometimes it's just hard...

- - - - -

This is my attempt to explain a tiny part of "The Thirtieth Day". It changes. It's usually sparked by an Abe or Heath moment, sometimes something else can spark it but it then gets turned toward an Abe or Heath moment.

This is not a happy cheery note. Please do NOT read this note if you are happy. It will bring you down. If it doesn't, I haven't written it properly. It will upset some people. That was not my intention. My intention was to write down what is going through my head on this particular Thirtieth Day.

You have ben warned.

Really - last chance. Stop reading now. Don't grumble afterwards. Fair warning has been given.

---------------
---------------

I used to think that I had tough decisions to make.

What colour should I paint the bedroom walls? Where should I put stuff that was clearly junk, but that I didn't have the heart to throw away yet? What would be the best shade of blonde to go this summer?

Then I had to decide where to bury my three week old son. Should he be somewhere near? Should he be somewhere central so family could visit him easily? Should we bury him in the middle of the plot, or should we bury him at the end so that we could bury his identical twin brother with him if we needed too? What should I bury him in? Should the funeral service be closed or open casket? There would be pregnant women there as well as newly postpartum mothers - would it be upsetting for them to see a three week old premature baby lying dead in a casket? I didn't want to make anyone feel uncomfortable - (the irony of that statement is never wasted on me, every time I think it I metaphorically smack myself upside the head) - how exactly does one plan the tasteful funeral for a three week old?

I took pictures. Pictures of Heath in the NICU, pictures of Heath with his grandparents and us. I took pictures to remember my son by, and to place at the funeral home in order to make sire that people could see him but not me shocked at "seeing" him. I took tasteful pictures. I took pictures that were heartbreaking, but I took pictures that would not offend. I was very, very careful to consider everyones feelings. I was a little too careful.

I forgot to consider my own.

Some people could not look at Heath's pictures. It was "too hard" for them to do so. I carry those words with me - "too hard". Too hard to look a pictures of a dead baby. Those pictures I took at *the* hardest time, the pictures that I took so that I would know he existed. The pictures I took so that I could show people how beautiful he was, how good he looked - how *real* he was. It was "too hard" to look at those pictures. I want to put that bag down. I want to drop that burden - I want to remove that knife from my heart. I want to be able to move on from that moment and to be able to remember my son's funeral with emotions other than sadness, bitterness and anger. I want to be able to scream and yell in the faces of the ones that hurt me. I want them to feel the pain they caused me on the worst day of my life. I want to make those people (that person?) UNDERSTAND. You hurt me. You ripped the last piece of unbroken heart I had from my chest, stamped on it, and then reinserted it backwards. You did this in the space of as many seconds as it took you to say "I can't look at his pictures Emma, it's too hard." I've been told that I said something hurtful to someone during Heath's calling hours. The evening before I buried my son. I'm not sure what to do with that...

I didn't hold my son during his funeral service. I wanted to. I was worried it would be perceived as weird. I didn't say what I wanted to say during his calling hours. I tried to be a good hostess. I comforted the people who were distraught, the people who couldn't talk to me for crying. I was worried that no-one would come. I was doing everything I knew how to make sure people came to celebrate my babies short life. I did this while his identical twin brother lay in the NICU hooked up to a ventilator and more life support systems than a Borg Cube in stasis.

That was three and a half years ago.

It feels like yesterday.

That is but one facet of The Thirtieth Day. There are more. Many, many more. The Thirtieth Day is something that visits unannounced. It appears when it is least expected. It can cover any space of time, and sometimes it can project itself into the future. It can show me things I don't want to see. It can open doors that need to remain locked until the day they need to be opened. It throws me around like a rag doll, then walks away and smokes a cigarette. The Thirtieth Day. It never used to have a name. It used to wear a mask and attack me from wherever.

At least now I know it. Friends of mine gave it a name. They have their own Thirtieth Day, a cousin, if you will.

I am told (and on days 1 through 29 actually believe) that all experiences are relative. Tough is as tough does. Worrying about a promotion at work could be just as traumatic as experiencing the death of a child. It's all a matter of perspective.

Sometimes I wonder what life would be like now if we'd lost both boys that day instead of one? Remember that twin? The one on the Borg Cube? Well, he disembarked, but not before paying the fare.

Quadriplegic Cerebral Palsy, Atrophic Cerebellum and reduced brain stem, bilateral hearing loss, non-verbal, unable to do anything for himself at all, totally dependant on others for every single need. All that, and yet still (as far as he demonstrates and as much as we're told by some) fully cognitive.

Cue Thirtieth Day. Same day, different facet.

"He's never going to have a life. He's never going to achieve anything. He should have gone with Heath - you should have put them in there toe to toe. You must really, really, REALLY suck as a woman and mother to be left with this one! What the hell did you do that was so bad you ended up with this mess?! Damn girl - You.Are.Screwed. You know they think he's retarded, you know they do. What, that word upset ya? R-E-T-A-R-D-E-D!! Please! Call it as ya see it, he's a REEEEE-TAAAARD!!!"

If I actually took all the hurt, anger, fear, sadness, bitterness and regret I own and showed it to someone in one lump sum, they'd probably lock me up. But then, for the most part, people see me when I'm doing fine. "The Curse of Competence" is that ones name. I believe it's related to The Thirtieth Day, or at least, they're pals.

There's a lot of "I" in this. But there is a "we". As parents, we are both affected by these events on a daily basis. We just have to figure out how to put each part in it's own little box and carry it in a way that doesn't double us over.

It's a lot to carry. When I drop a box, forgive me. It takes me a minute to pick it up and rearrange.

I know there are people who would see this and tell me who I could have carry this load for me. Well, I'm mad at Him. I'm as angry as a cornered cobra. We're not talking right now. He let me down, again, and I'm not sure I'm ready to give Him another go.

I do know I have to take back my power. I just don't know how.

Thanks for reading.
Emma

Breakfast for three

Every once in a while, we have a babysitter come in on Saturday mornings so she can feed the kids breakfast and my husband and I can go out for a couple of hours. Last Saturday, our five-year-old begged to come and we gave in, leaving Max at home with the sitter. 

As the three of us sat an outdoor cafe downing bagels and eggs, I started thinking about how we'd never be able to do this with Max. He doesn't love sitting in restaurants, let alone outdoor ones. Often, he whines and gets restless. He typically ends up on my husband's lap, and he feeds him. It is not very relaxing for any us.

I thought about how much easier life would be if I had two typical kids. How it would feel to be a parent who doesn't have to think twice about taking her kids out to a restaurant, to the mall, to anywhere. And I felt stricken with awful guilt. I hated myself for thinking that.

I know another mom whose child had a stroke at birth. I met her early on, soon after Max was born. Her son was about four years older than Max. She had two other kids, and she and her husband would go out on weekends with just them while a caregiver stayed home with their son. I judged her for that. I thought it was a horrible thing to leave their child at home and live as if they were a family of four. I vowed I'd never do that to Max, and we haven't. We take him everywhere we go. We do things as a family.

But as I sat there at the breakfast table, having a relaxing meal, I had my first glimmer of understanding about the decision that mother had made. And while I didn't agree, I understood. Suddenly, I understood.

 

Ellen blogs daily at Love That Max.

The making of a music therapist

I've always loved music, always loved to sing, always wanted to play an instrument and couldn't wait to make it to 6th grade so I could start in the beginner band.  From Day 1, I was the stereotypical "band nerd" you've always heard about.....I hung out in the Band Room 24/7, I ate/drank/slept Band and Band-related activities, and my idea of a fun sleepover at a girlfriend's house was to bring my trumpet so we could practice Band music together!  I knew from 7th grade that I wanted to be a band director and to model myself in the image of Mrs. T, my amazing middle school director.  From that point on, I was laser-beam focused on the goal:  make AllState Band, go to Furman University and major in Music Education (just as Mrs. T had done), then have a fabulously successful career by imparting the love of music and of Band to young people just as she had done for me.  And I'm proud to say that I did most of that....SC AllState Band 1985/86/87/88/89, graduated from Furman "magna cum laude" in 1993, and taught band at middle school and high school levels from 1993 to 2009. 

And yet somehow none of that matters to me any more.  Looking back at that now is like watching a movie about someone else's life, as if it wasn't even really me who did all of those things.  I have truly, literally, taken the "road less traveled" and left behind the competitive, obsessive, all-encompassing world of Band (with the capital "B", to distinguish from just plain old band).  The reason for this life detour is the same reason that brings me here, that qualifies me to belong to this group of hopeful parents.........I became a mother to two children with "special needs". 

Thanks to an incredibly supportive husband, and encouraging friends and family, I left my teaching job in May of 2009 and enrolled in the Music Therapy program at a university that's 10 minutes from my house.  The program is one of only two in South Carolina, and its existence and nearness just confirms for me that this is what I'm supposed to be doing.  I have to admit that I only recently understood what Music Therapy actually was, and I would have NEVER thought (back in my full-speed-ahead Band days) that this was something I'd ever want to do.  But my boys changed me, changed everything, and now I know without a doubt that this is what I want to do, what I'm meant to do.  And the more I learn about MT (I have just finished my first full year of the program), the more amazed I am by its power and its potential.  In the same way that I used to get that rush of adrenaline and excitement when a clarinet player first reached the high register, now I get it from seeing a preschooler with CP smile when she is able to grasp and shake a maraca.  Instead of drilling a concert band in a scales and arpeggios routine, I'm helping kids with developmental delays hold scarves and wrap them around a Maypole.  The thrill of seeing "my kids" go into an AllState audition was replaced by the infinitely bigger thrill of watching a preemie's heart rate stabilize when I hold her and sing to her. 

Music therapy can truly do amazing things with almost any population.  Some of my classmates plan to go into hospice work, or geriatrics/Alzheimer's patients, or inpatient psychiatric  facilities, etc.  But I know that I'm still a teacher at heart, and will be working with children but just teaching them different things.  The goals will be different, the strategies different, maybe the rate of progress will be slower but so much more rewarding.  I'm so proud of the profession of music therapy, proud to be only a year away from being board-certified to practice (hopefully!), and I want to recommend MT to all of you who read this.  If you've never heard of music therapy, or don't know much about it yet, visit the website of the American Music Therapy Association to find out more.  http://www.musictherapy.org/factsheets/MT%20Young%20Children%202006.pdf  

And if we needed any more proof of the power of music and its ability to reach people in a way that nothing else can, I'll share this:  In May, as I shadowed and assisted a local MT for a few weeks, one of our sessions took place in an inner-city middle school.  The class was small, but with a very diverse group of students with moderate to severe disabilities.  One young man in particular stays in my mind (let's call him Mark).......I was not shown the IEPs of these students, but from what I observed, I concluded that this young man probably had autism.  He spent most of the time hitting himself in the face/chin and making basically undistinguishable sounds.  He was probably 13 or 14, I'd guess, and was functionally non-verbal and not engaged with the class or with others.  One of the activities that the MT planned for this particular day was designed to address motor skills/coordination as well as socialization, and involved the popular song "Cha Cha Slide".  When the music began, it's as if Mark awakened, engaged with what we were doing and outwardly showed that he heard us for the first time in the session.  We asked everyone to stand up so we could dance, and Mark quickly got up and began to move.  He took my hands to dance with me, and wouldn't even allow other students to "cut in" on us when they tried to!  When a line in the song said "Everybody clap your hands", he did!  I clapped too, and he even put his hands on the outside of my hands so we could clap together.  There was no doubt that he enjoyed the song, and after it ended, we sat down.  A few moments later, he sang that same line back to us..."everybody clap your hands".  No words, just an "uh" sort of syllable, but it was sung with exactly the same rhythm and inflection as in the song!  And then he clapped again, just as before.  This song reached Mark, and he didn't want it to end.  As a group, we enjoyed a shared experience with music, and we felt the incredible power that music has.......to inspire us, to move us, to touch us.  And that is why I find myself back in college at age 38, and why I know without a doubt that this is what I want to do with the remainder of my life.  And I love it. 

Take This Job and Shove It

Do you remember career days from elementary and middle school? I believe in high school similar events are called career fairs. People with all different types of jobs are brought in to share their experiences with the students with the hope of exposing those students to the many options for their employment futures. I think it is a great idea to encourage the students to explore career choices and hopefully find the one(s) that interest them the most. That’s what most adults want for children – happy, fulfilling careers. Unless the child has significant disabilities.

My children with significant disabilities are not included in career days or career fairs. Sure, they have “transition” meetings when they reach their late teens – meetings at which a group of adults discuss what the future holds for the child with disabilities. But even at those meetings, the children are not asked what they would like to do as adults. (Yes, yes, I know IDEA 2004 requires that children participate in their transition meetings and that they be asked what their interests are – but let’s get real. How often does that really happen?).

During the elementary school years, children with significant disabilities begin learning functional skills – that translates into hand washing, toileting, and eating. Along comes middle and high school, and those functional skills begin to include things designed to prepare the child for employment. The problem is the children are not asked along the way what type of employment interests them. They are not exposed to options as are children without disabilities. They are merely taught to sort, collate and assemble things like toothbrush holders. I don’t know about you, but if I had had to spend my entire adult life putting the two ends of toothbrush holders together, “going postal” would take on new meaning.

Would it be so difficult to discuss with the child that has significant disabilities what really interests them? If the child’s communication system is lacking (and yes, I am assuming that the children have some sort of formal communication system BECAUSE IF THE SCHOOL SYSTEM IS DOING THEIR JOB, the children will), how about observing what activities make them the happiest, and then translating that into possible employment opportunities? For example, my Ashley loves plants and flowers. Why not turn that love into a career option by teaching her to care for plants? She could then work in a greenhouse or florist.

Yes, I think the next soapbox onto which I step will involve career choices for people with significant disabilities. I need to work on this before Ashley enters the job force. Otherwise, she will rip up and burn all those papers you had her collate for stuffing into envelopes, or she will tell you just where to stick all those toothbrush holders you have had her assembling.

Naked Boy

G. is now firmly six and a half: he weighs over 100 pounds and is 4-1/2 feet tall.  Most of his clothes are a boys large, meaning 10-12 year old boys are wearing similar clothing.

I’ve felt comforted to hear that other families with autistic children find them stripping down in their houses for no particular reason: G. could be wearing tailor-fitted clothes and still remove them without compunction or regard for circumstance.

We had a dinner party the other night that included friends and neighbors.  As the night got a little long, I let G. stay up until about 9:45pm.  When it was time to go to bed, G. casually walked into the dining room for everyone to see his less than kid like accoutrements.  One of our friends shouted, “I didn’t realize it was going to be this kind of party!”.  We all laughed, with the exception of G., who did not want to go to bed.  G. dropped to the ground and put all of his weight into staying there.  Fortunately, whatever will he has, he got from his willful parents and I lifted him from the floor and got him into bed.  He was exhausted and fell quickly to sleep.  He awoke the next morning as naked as he had been.

The slight difference was, he wanted to go on the porch.  Different rules apply and thankfully, he respects these.  Excited to get fresh air and see the birds, G. dutifully put on all of his clothes and went and waited on the porch until I was awake and downstairs – something like 40 minutes (I can hear everything going on below my bedroom, so wasn’t worried).

When I got downstairs, we prepared and ate breakfast and decided on this slightly rainy day to go to the zoo.  Although his socks needed to be discarded after getting wet, clothes remained on until evening and bath-time, to everyone’s great relief.  Now it is my hope that we continue seeing more instances of spontaneous dress and maybe even communication telling me how that feels.

A Further Shore

I remember the page in each of my three children's baby books that was titled something like "important events happening now" or "what's going on when I'm born." For Henry, it was the Monica Lewinsky-Bill Clinton scandal and for Oliver it was the abysmal, depressing election of George Bush. For Sophie, it was the O.J. Simpson trial and the Republican takeover of Congress. On page 34 of Sophie's baby book The World on Your Birthday, I wrote under My view of the world today:

Everything in the media would lead you to believe that the world is a terrible place, but I tend to hope and trust in the beauty and constancy of life on earth.

When I wrote those words, I naturally had no idea what three short months would bring our small and very new family, but if I were to have a baby today, I would probably write much the same thing. I am curious, often, about the nature of hope and go back and forth from thinking that it's the realm of the idiots (myself, included) to the abode of the transcendent. 

Last week, I had the privilege of meeting a fellow blogger, Teresa, and and her beautiful family. They had come to Los Angeles to see, once again, Amma, the Indian, living "hugging saint." Teresa and I have been reading each other's blogs for over a year, and she had told me of her special relationship with Amma. She had even sent me a photo of Amma and some blessed ashes and flower petals that I put in Sophie's room. So, when she came with her family and offered to introduce Amma to us, I jumped at the chance. As readers of my blog know, my daughter Sophie is going through a particularly difficult time right now. She is having a recurrence of ESES (electrical status epilepticus in slow wave sleep), a rare seizure disorder that wreaks havoc on her brain and is difficult to treat. This syndrome is on top of her "normal" baseline brain dysfunction and renders her very frail and wracked by really debilitating daily seizures. That I have felt desperate of late would be an understatement and getting through each day has been dreadful in every sense of that amazing word. 

So, we went to see Amma, and while I'm not the sort to have blind hope, I do hope with what I call realistic pragmatism. I think to myself that it couldn't hurt. I think we might as well try this because who knows, it might help. What have we got to lose? I'd add that the very nature of hope can sometimes inspire the most banal thoughts and platitudes, and perhaps hope's opposite does as well. Why bother? Nothing ever works. It's probably a scam, a crock of shit.

I wrote a bit about the experience on my personal blog and will say here that it was quite a profound one. When I was pulled into Amma's strong embrace, my face buried into that soft area below her shoulder, my shoulders shook with before-tears. Sophie was beside me, squirming and then quiet on Amma's other shoulder. Her body smelled like honeysuckle which seemed amazing to me, given just how many people had been embraced in that exact spot. Amma murmured words in a language that I didn't understand and when someone standing next to her whispered something to her, she said the word epilepsia and then we were very quickly pulled off of her and ushered away. Several people rushed around, saying that we needed sandalwood, and before I could practically blink, Teresa appeared with a fresh piece of this precious wood. The wood was given back to Amma, who evidently blessed it and then instructed us to make a paste from the wood by grinding it on a stone, each night with water and then smearing some of it on Sophie's temples and head.

And that was it.

And that's what we're doing. 

For the first five days or so after seeing Amma, Sophie had no big seizures. She was remarkably happy and vibrant, really, very different than she had been for a long, long time. I, too, felt a relief, an ascent into what I can only describe as ease. I told myself that it was good: I allowed myself to hope that maybe, just maybe this would be it and wouldn't that be weird? But I also told myself that it might not be it -- that healing is not necessarily in time, something that our conscious minds can comprehend. I don't know, really, how to explain this.

Sophie had a few big seizures today. They seemed to come out of the blue. I heard a thump from her room and walked to it, saw her lying on the floor, her arms out, face-down. It's a terrible sight and my hope sank in that moment as I righted her and wiped her forehead.

I will grind the sandalwood each night and make a paste and smear it on her head. I will hope that the cooling effects will work on her brain. I will feel despair again and hope again, because that is how it is.

 

So hope for a great sea-change

On the far side of revenge.

Believe that a further shore

Is reachable from here.

Believe in miracles 

And cures and healing wells.

--from The Cure at Troy by Seamus Heaney

 

Elizabeth blogs regularly with hope and despair at a moon, worn as if it had been a shell. She is incredibly grateful to Teresa and her family for what they did for her family.

The Second Time Around

I feel honored to have my monthly post here fall on Father’s Day! I would love to take this opportunity to share a little bit about my dad, and why he inspires such hope in me.

My father’s parents emigrated from Czechoslovakia in the 1920s and settled in New York. A few decades later, the desire for new surroundings struck again and they drove across the continent to live in Los Angeles. My father was twelve years old at the time, and the experience must have ignited in him a passion for travel. So strong is it at this point that I don’t even know how many countries he has visited, but I think it’s over forty. And he has set foot on every continent except Antarctica.

It’s quite likely that he might have had time to travel to even more countries, but on many trips he likes to return to places that he’s already been, and loves. He’s been to Greece at least a dozen times. Same with Thailand. And there are several other countries he’s returned to more than once, just because he liked it there and wanted to go back – or maybe he missed something the first time around. Or he wanted to return to certain countries to share the experience with any of his four children. Whatever the reason, he is a seasoned world traveler who enjoys planning his trips as much as he enjoys taking them. It’s what he lives for.

Just over two years ago, my dad was diagnosed with colon cancer. Surgery was rapidly scheduled to remove the large tumor that had been growing for several years. Dad pulled through and started chemotherapy. The oncologist said that it looked like he got it all, and Dad felt tired but good. He flew to Peru and climbed Macchu Pichu, and then visited some out-of-state family members. We all felt confident that the cancer was gone. But about a year later, it returned, and this time it had spread to a lymph node outside the colon, so Dad’s doctor placed him between stages III and IV. It was worse than the first time, and we were scared. He had surgery again, and this time, the surgeon accidentally cut his ureter. A stent had to be placed on the ureter for several weeks, causing considerable pain, in addition to the usual post-op discomfort. All the while, Dad kept a very positive and hopeful outlook and continued to plan his trips.

But he worried us, saying things like he wanted to take his teenage grandsons to Thailand now rather than when they graduated, since he wasn’t sure how much longer he’d be around. I told him he couldn’t think like that. Dad soon started his second round of chemotherapy, more aggressive this time (twice monthly IV treatments plus daily pills), which caused significant fatigue and cold sensitivity. Finally, when the treatments were over, Dad’s bloodwork showed that the cancer indicators had dropped. Feeling relieved and optimistic but not wanting another repeat, Dad decided to become proactive. He researched types of alternative cancer treatment and prevention and dramatically changed his diet to bolster his immune system post-chemo. He started drinking daily green smoothies and taking various supplements, determined to retain his health, to do everything possible to keep the cancer at bay.

And so far, so good. His latest tests taken just one month ago look promising. He continues to make his health a priority and maintain his positive outlook. I can’t put into words how inspired I am by his hopefulness throughout this whole experience. And I am hopeful too. I’m hopeful that this time he’s beat it, that he’s going to be around for much longer than he’d thought last year. No, Dad’s not going anywhere soon.

Except Thailand, of course. And Greece. Or maybe Peru again . . .

Wishing everyone a very Happy Father’s Day!

                              Tanya writes TeenAutism.

The Perils of Travel

With school out and summer stretching out before us in a long golden arc, I've been thinking about traveling.  We live in the Pacific Northwest, and most of our relatives are scattered around the far south, with the vast majority concentrated in Texas.  At least a couple of times each year we board a plane and make the exodus down to spend at least a week or two house-hopping so that Connor gets a chance to be equally spoiled by everyone before we make the journey back home.

Truth: it's getting harder. 

As Connor gets older, not only does he get heavier, which makes him much less portable than he was in the past, but he also develops more opinions of his own, and he isn't afraid to express those opinions through a combination of signs and top-volume shrieking.  He also continues to add more equipment and medication, all of which needs to be carried with us rather than checked.  And then there's the added excitement that his apnoeic seizures have been wildly out of control in the past few months, and this means that if we choose to fly by plane we could potentially be performing mouth-to-mouth at 30,000 feet.  Basically we've developed into a flight attendant's worst nightmare; we're required to have a doctor's note releasing us to fly before they'll even let us on the plane.  And I won't even mention the looks we get from the poor passengers crammed in next to us. 

Driving comes with its own set of fun problems; length of time spent in the car, mapping out a route that has us spending the night only in cities with major hospitals, trying to figure out what we would do if Connor had a seizure while we were driving on the highway through, say, Buford, Wyoming (population: 2) . . . the list goes on. 

And then once we get to our destination, we have more hurdles to leap over.  Wheelchair van rental (provided we didn't drive).  Communication barriers.  Connor's severe social anxiety and reliance on routines.  Non-wheelchair accessible homes.  Certainly it would be easier for us to stay home.

But the connections we make and renew with family and friends are too important to us to not try and make it down, one way or another.  And I have an instinctive dislike of the idea that rather than face the challenge of travel head-on we turn into some sort of hermits; it wouldn't be good for Connor OR us. 

This year we may try the train; a leisurely (though extremely long) journey that might make it easier on the little guy as we could get a private car, but it would also make sure that if he had a medical issue we would be somewhere we could get immediate help.  And it might make for a refreshing change of pace; it could potentially turn the journey itself into a vacation instead of a giant hassle.

Here's to new adventures!

~Jess

 

You can find Jess at http://connorssong.blogspot.com.

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BEST

Have a big thing against people using disparaging remarks to each other, period, but when it involves insulting intelligence, I pretty much come unglued.

Was sitting somewhere recently where I did not have the luxury of leaving. Heard someone call another coworker the “s” word, twice.  The co-worker could hear, not that being out of earshot makes it any less wrong. At that point I butted in, “Hey,” I said, “you can go ahead and be as grumpy as you want, we all get grumpy, but you cannot be unkind.” After that the offender became noticeably nicer, but I’m not sure he really “got” it.

Not sure it’s my place in the world to point out when other people are being unkind, but can’t really help myself. The problem, however, is the fact that it’s socially acceptable to do so.

Was standing in line to get coffee recently and the barista used the “r” word. My defense is I didn’t want to lose my place in line to go up there and reprimand her, and was too far back and didn’t think yelling was a great idea, either. Problem is, I’m pretty sure fear is what was really holding me back. Didn’t want to cause a scene. Didn’t want to embarrass myself or anyone else. Didn’t want to look like the one coming unhinged. Wouldn’t make a big impact if everyone thought, oh, don’t mind her, she’s nuts.

Attended an eighth grade graduation and a high school representative was there to bestow some awards. “This is for the brightest and the best,” she said. My hackles went up. Don’t get me wrong, the kids receiving the awards totally deserved them, and indeed, are very bright, and are the “best” at many things. But the best? Best what?

But how in God’s green earth are we ever going to change the mores to reflect respect for others? ALL others?

Told my husband the other day that he is forever saying “there’s” when what he means is “there are.” Bugs me.

“What does it matter?” he asked.

“It matters because we’ve become sloppy in how we speak to and about each other. We aren’t making conscious word choices. We must be thinking about what we say, before we say it.”

“You’re right,” he said, uttering my two most very favorite words.

And as happy as those words make me, I can’t bear the thought of my son living in a society where it’s okay to call him “s” or a “r,” to his face, behind his back.

Or anywhere.

 

Carrie can be found at http://fully-caffeinated.blogspot.com

 

 

theirs to define

**

It's almost inevitable. If enough autism parents are together in a room, one of them will ask.

How did you decide to talk openly about Brooke's autism?

I'll tell them that I'm happy to run through our logic, but that first I must make the disclaimer that it's a personal decision and that everyone has to handle it in the way that they think is best for their child. I'm big on disclaimers, you see. Nothing about autism is a One Size Fits All proposition. So I'll say that none of us can crawl inside each other's families. That we have to trust one other's ability to choose the right paths for ourselves and our children.

And then I'll answer the question.

I will tell them that we believe that the only way to extract the stigma from the label is to demystify it. To make it real. To give it a face, a name, a three-dimensional being.

I will tell them that we believe that awareness leads to compassion and compassion to acceptance.

I will tell them that we believe that ignorance perpetuates discrimination and fear.

Someone will whisper the next question like the mom at the dinner table in Saint Elmo's Fire.

But have you told your daughter? Does SHE know?

I'll answer that I have. That we use the words and the concepts as openly at home as we do anywhere else. I'll tell them that I have no idea how much of it she understands yet. I'll explain that her language just isn't there yet.

Someone will ask why. But why does SHE need to know?

I'll invoke the words of Dr. Stephen Shore. “I was lucky in that my parents used the word autism around the house for as long as I could remember. We didn’t know what it really was back then but it sure helped explain a lot of the differences.”

I will tell them that we believe that knowledge is power and knowledge of oneself is the greatest tool imaginable.

I will tell them that we feel that secrets imply shame or fear. Or both. I will tell them that I want neither in my home.

I will tell them that we believe that our daughter deserves all of the insight we can give her into her strengths, her challenges and everything in between.

They will ask BUT HOW? How do you tell them?

I'll go back to Stephen Shore and tell them about his four-pronged method of disclosure.

1. Talk about the child’s particular characteristics. Cite strengths first and then talk about challenges.

2. Line up strengths with challenges – identify those that can be used to offset each other.

3. Non-judgementally compare their set of characteristics with other people. Include luminaries that feature prominently in history or popular culture. Newton, Einstein .. you know the drill.

4. Explain that the particular set of characteristics fit under a label.

Someone will say, Fine, so you talk to them about common characteristics and help them understand their challenges, but why do you need to put a LABEL on it?

She'll spit out the word LABEL as if expelling a sip of turned milk from her mouth. LABEL.

I'll ask why a name has to be a bad thing. I'll ask if we can't reclaim it for our children. Reframe it completely. Give it to them - make it theirs to define. I'll find a passion stirred, the sleeping giant opening one eye and peering around the room. I'll try to contain him.

I'll ask a question of my own.

What if we could bring these kids TOGETHER? What if, instead of labeling them per se, we can give them a tool with which they can identify themselves and EACH OTHER? What if the label is a gateway to the monumental understanding that these kids are NOT alone? What if this group - this incredible group of people - this group that can so easily feel so desperately isolated from their peers - what if they found out that their differences, in and of themselves, are not so damn different after all?

I'll try to rein it in, but I'll fail.

I'll turn to the woman who asked the question. I'll leave her with one last question in return.

Can you IMAGINE the possibilities?

**

Jess can be found at Diary of a Mom where she writes about life with her two daughters, Katie* and Brooke* and her husband, Luau*. 

In Defense of Hope (and of Faith in Humankind)

I am often discounted, both by people I trust and people that haven’t yet had the chance to earn it.  For some, I lose credibility immediately upon choosing a positive perspective of any given situation over a negative, when the choice presents itself.  It does in nearly everything.  Not that I always choose the rosy glasses – 50/50 when dealing with adults, 70/30 with the under 10 set.  It’s more reflexive than anything.

When I share my small tales of Addie’s fairly rich and connected life at 6 years old with other parents of kids with differences, I am patted on head, told that I ain’t seen nothing yet, essentially that people are evil at worst, clueless at best, when it comes to counting in my child with cognitive, communicative and medical differences.

There are times I offer my stories or my intentions for projects and work related to meaningful inclusion for those with differences, only to get in return the dismissive smirk from parents of older kids purportedly in my same “boat.”  The look (or sometimes actual words) that says, “well, aren’t you darlin’?  I used to think that way before I knew better.  Best of luck when the truth dawns on you, hun!  You’re best to shelter your child from any social or practical expectation outside our world now, but experience will tell you that soon enough.   Carry on with your imaginative play and I’ll meet you in the real world – the disability ONLY world, when you’re ready.” Pat, pat, pat.

I am impotent against this.  I can do nothing.  The reality is that my child is 6 and just finishing kindergarten.  She is a blue eyed, curly-headed blond who beams at any worthy-to-her being  and clearly has some developmental originality to her.  Attention (often mistaken for inclusion) is a reflex for  90% of the older-than-her female population who have ever borne a child or intend to parent one day(this begins at age 8 and on up to 100), and for 30% of the male population in general – which is saying something.  The girl, much like a newborn, is everyone’s business and they often feel compelled to tell me how dazzling her hair is or her eyes are.  She clearly attracts notice and general (albeit surface) positivity at this age and size. The facts are stacked against me.  I can’t help but look like a rube, oblivious to a strong wind behind us, smiling widely in the mistaken belief that we clip along by our own power and worse, that we expect to continue to direct our destiny.

I get the view that we should shrug our shoulders and come to terms with the fact that the world has not evolved with our kids in mind.  I understand the experience, the exhaustion, the disappointment it comes from.  I really do.

But I don’t hold it as fact and it does not guide me. Instead, I choose to believe in people, to believe in children, to not judge based on poor choice of words, or the social slippage of a prolonged glance.  In our family, we hold out after something leaves a bitter taste in our mouths.  We wait.  We wait for the good.  In waiting for the good, we are seen smiling, trusting, expecting.  Maybe the wide-eyed look does imply something short of savvy.  But people, young and old, prefer to rise to expectations over failing to meet them, particularly when they are so elemental to meet.

I have lived that as true, seen it play out.  When a child stares at my beloved because she is different, I can chose any number of responses.  My immediate response shapes what I internalize about the other’s intentions (often not the other way around for me, contrary to standard belief), what my witnessing children internalize.  When a child stares or points, I can fling a bitter retort at the parent , stomp away, or sulk, thus cementing the impression of evil  that was one of my options for perspective: an impression that  would guide my approach to everything and distract me evermore from recognizing genuine interest and intentions towards my child, buried in unfortunate vernacular or differing interpretations of manners.  It leaves a nasty stain, in truth – a stain that would seep and overtake my daughters’ faith in others, as well. I fear this is all too common an evolution of outlook.

This choice to see evil in murkiness puts the other person, no matter how virtuous or even ill-intentioned they may be, in flight or fight mode.  There may be a follow up dig or a retreat.  Either way, if I choose it, I have wasted something and cheated both my daughter and the other human involved.

Or.

I can witness a lingering look, swallow anything that might need swallowing, and turn it into an introduction.  “Hi! I see you are really interested in Addie, can I introduce you?  She has the very same beach towel as you!”…or..” you have gym shoes on, Addie has gym shoes, do you like to run?  Addie, can you show him the sign for “run?”  Yes, now you try…  Yep, she talks. Not with her mouth, but with her hands and a computer.  Computers are cool, huh? Addie, show him your…page…”

Kids greet my daughter by name, genuinely happy for the chance to say hello and get a sign from her, based on these very beginnings.  Often, their parents are impressed and charmed by their child’s nonchalance to difference, which catches on like a virus.  Suddenly, our families are not so hush, hush disparate after all.

These are very kindergarten conversations, I know.  Easy, elementary, basic.  Trickier when you’re talking alternative music, Abercrombie and Fitch, Twilight and beyond.   We get that the gap is as small as it’s ever going to be.

And I’m not always in the mood or mindset to hand out the benefit of the doubt that is so very often withheld from my daughter.  Some days I say nothing.  Some days I walk away with my mind imprisoned  considering  acidic or cathartic zingers I could have hurled, ruminating for hours.  But I don’t hurl anything.  My child and other children – maybe yours - seemingly outside the trajectory, would bear the brunt of my bitter choice to further separate my family from others.

My husband, both my daughters and I, we are willing to work with things as they are. We trust general intentions until we collect enough evidence to contract our faith in any given person or group of people.  We believe and promote the idea that we are connected just because we are human.

I’m not sure that those who dismiss me and my work started out in the same place.  And therefore, I don’t accept their dismissal.  Instead, I worry about – and continue to work for, all children.  Especially theirs.  

http://www.farmerjohncheeseandotherjoy.blogspot.com/

One More School Year Down

My elementary school-aged kids finish the school year up tomorrow, which gives me reason to reflect on how this school year has gone for Jack, my autistic son. He will have just completed first grade, something that I wasn't sure he could do at this time last year.

I remember how hard kindergarten was for him. The transition to elementary school took the entire year. We started kindergarten with a phone call from the principal and an early pick up on the first day. We ended kindergarten with trepidation as to what laid ahead.

See, my oldest son is just one year ahead of Jack in school, so I was all too aware of what Jack was going to face in first grade. Weekly homework packets, long spelling words, and subtraction with borrowing awaited.

I hate to say it, but I didn't think he was going to make it. I think I may have uttered the words "sink like a rock" to my husband.

To my surprise, Jack stepped up. Yes, there were behavior issues and calls from the administrators, and don't even get me started on the homework hell we went through this year. But he hung in there. It turns out that even though he didn't like to do his homework, he loved practicing his spelling words. Even if he hated subtraction, he loved addition and counting coins. He might not have had appropriate behavior every day, but he did okay and he even made a new friend.

To see where Jack is today and where Jack was a year ago is to see a child who has made incredible strides. Age, time, and learning has helped him so much. He is growing into a very cool kid.

The really great thing about his success this year is that I can see his potential for success in the future. I see what my older child has done in second grade this year and I worry that Jack won't be able to handle it. But then I think to myself that I had these very same fears last year, and he did okay.

Now my challenge is to take that knowledge that Jack will continue to grow and rise to the occasion and turn it into heartfelt belief. Because have you seen what second graders have to do these days?

Jean writes about her life and family at Stimeyland. She runs an autism events website for Montgomery County, Maryland, at AutMont. In addition, she writes a column called Autism Unexpected for the Washington Times Communiities. You can follow her on Twitter as @Stimey.

Adventures in Not Parenting

This morning, I drove The Kid through winding mountain passes, in the cold snow and rain (yes, snow. It's Colorado, what can I say?) to summer camp. It's a special camp run by occupational therapists and a few other specialists in adaptive, expeditionary learning. He'll be there for four days.

I really don't know what the hell I'm going to do for the next four days. I mean, WHAT AM I? WHO AM I? I can promise I won't be having some kind of lifetime movie reawakening or anything. I will probably work a few 10 hour days. I'll watch an R rated movie of an evening. Dinner will be unabashedly not kid friendly.

I do know, without a doubt, that I will send my thoughts up into the mountains towards his camp, that he's making friends, that he's proving himself a leader, that he's finding himself capable of things he never dreamed himself able to do. I hope he has smores.

But because this is a camp that is designed for kids with sensory issues, I hope he comes away with more than the regular camp stuff of learning some silly songs and how to macrame and winning the canoeing championship. I hope the seeds we've been planting will start to sprout. I hope he realizes that some of the fun activities he takes on this week help him self-regulate. I hope that he learns to go with the flow when he inevitably gets his socks wet. I hope he finds an avocation up there (rock climbing, boating, hiking etc) that interests him enough that he'll want to continue doing it on his own... Banking on the rock climbing here, actually...

I see so much potential in my little guy. He's so intelligent. He's so strong. He's so charismatic. He is just on a different schedule from most kids, and in some areas, he'll never catch up. But I'm still convinced that he'll find his THING and his PEOPLE. My job is to continually introduce him to as many opportunities to find them as I can.

Even if that means I have to hang out all week and a spookily quiet house. Or maybe especially.

Blindspots

This site is devoted to parents. It has seemed appropriate that, a couple of times in the past, I’ve turned over my monthly blogging spot to my mother, a clinical psychologist. I am doing it again today..............

As a clinical psychologist, I listen to many people talk about their own parents and I hear an equal number of people talk about themselves as parents. When clients talk about their own parents, they often reflect on the impact - positive and negative - that their mothers and fathers had on their development. In these discussions, clients realize that they have survived, most quite well, and everyone has gone beyond their parents’ teachings and learned for themselves. On the other hand, when clients talk about being parents to their own children, they are clearly struck by the awesome responsibility of raising little people and guiding them into adulthood. Many aspects of parental responsibility frighten people, some confuse them, others delight them and a few enrage them. Let’s talk about the last experience.

One reason (and there are many others) that a mother or father becomes terribly angry at a child is when that child is too different from the ways that the parent was at that same age. Here are a couple of examples: Greg is furious at his son Adam and doesn’t yet know why. Greg worked hard in school, he was competitive, ambitious and outgoing. Adam is somewhere on the spectrum of autism. He is not now and never will be the hard driving man that his father became. Fran is enraged with her daughter Alyssa. Fran cared for an emotionally frail mother; she silenced all of her needs in the service of keeping her mother happy and stable. Now, years later Fran must be the caretaker again and, for the rest of her life, she will have to think about Alyssa’s wellbeing. Alyssa will never cater to her but she will offer a love that is unlike Fran’s imaginings.

The common theme – our children are not us. They are their own people. Our fantasies about parenting are just that - fantasy. Parenting happens in reality. It doesn’t pay to get angry or disappointed. You can coax, feed, or scold a rose and it will never become a lily. You can nurture a beautiful rose or neglect it, but you have a rose. Try to separate out your wishes from your child’s personality, character and ability. Both of you will feel lighter and free.

Linda N. Edelstein, Ph.D.



Finding Acceptance

Whenever I discuss Ethan’s autism with friends and family, the conversation usually centers on how he is sleeping (or not), or what progress he is making in one of his therapies. We might also talk about milestones he has reached, but until recently, I’d never discussed my hopes for his future.

I was catching up with an old friend and she wondered what I hoped and dreamt for Ethan’s future. I had a surprisingly difficult time answering that question and our conversation made me realize how much I avoid thinking about the future.  Of course, I hope most of all for his happiness, but I hadn’t really thought beyond that.

It’s much easier to envision hopes and dreams for my future self. More than anything, I hope to join the ranks of those parenting special needs children who have found peaceful acceptance of their child’s condition. I’ve felt it before, but it was brief, fleeting. About one year after we learned of Ethan’s deafness, I embraced the beauty that is American Sign Language and felt a sense of pride that my little boy could be part of the deaf community. It seemed like less of a disability and more like an opportunity, a membership to an extraordinary and mysterious culture. That’s what helped me cope with the notion that he may never hear or speak.

I’m not sure where to look, or how to find this same source of acceptance with his newest diagnosis. Rather than celebrating his difference, the activities and therapies we do now seem more like a rejection of who he is and who he’s becoming. It’s just a matter of perception, really. So how do I change this mindset?

For now, I stay focused on the blessings in our lives, and I think that’s pretty effective for the most part. I look at all the compassionate people that work with Ethan and the friends and family who “have our backs”. I thank God for our health, that Ethan is alive and healthy, that we have a roof over our heads, and food on our table.

What else can I do?

 

Ethan actually hears now thanks to his magical cochlear implants. He has been learning to speak, too. He’s full of surprises ;-)

Summer Time Transitions

Now that it is June, strawberry shortcake season is upon us.  Sylvie loves whipped cream sweetened with maple syrup. She can’t really manage chewing or swallowing the cake or strawberries, so she just goes for the sweet, fluffy stuff.  June also marks the ending of the official school year.  As an educator myself, this time of year is always so bittersweet. I relish the thought of a summer break to hang out at home more and catch up on projects.  But it’s also a period of transition when I know that I will no longer see some of my students again as they go onto jobs and adventures outside of college.  I know this is life.  But I still cringe a bit at that transition. 

Sylvie’s first year of preschool is winding down, and it was with some trepidation that we said good bye to her classroom instructor last week. Ms. Carrie got a job offer in Michigan at an outdoor education center, so she left her class before preschool was officially over.  Ms. Carrie was definitely one of those teachers that just really opened her heart up to our family and gave her all to Sylvie this year.  She had never had a child with “special needs” in her class before, but that did not dissuade her from doing everything possible to include Sylvie in classroom activities. She approached the teacher-parent conferences with the same seriousness and respect she would give any other kid, and she muddled through her first IEP with us and the public school administrators with gusto.  I want all of Sylvie’s teachers and care providers to be like Ms. Carrie! 

We wanted Sylvie to go to some structured program especially for the socialization/kid time aspect of preschool.  As far as I can tell, the kids have been fantastic about playing and interacting with Sylvie.  Sylvie’s instructional assistants have told fun stories of how much Sylvie likes circle time and listening to music. Sylvie’s speech therapist has been great about getting photos of all of Sylvie’s classmates so we can talk about them when we’re not at school.  In fact, her speech therapist and instructional assistants have been remarkable all around, trying out new technologies, genuinely thinking about ways to communicate with Sylvie that doesn’t include words per se.  

Thank you fine women who have taken good care of Sylvie this school year!  I know too well that those who care for our children are often undervalued and under paid.  These educators and care providers are doing hard emotional labor. And that type of labor just isn’t the kind that is necessarily monetarily valued!  If I could, I would love to pay Sylvie’s personal care assistance a more livable wage that includes full health benefits and paid vacations.  Sylvie’s PCA for this year has just left, and at least two others, including her school assistant are going away this fall.  Maybe if we paid them more, they would stick around. But maybe not---this continual care for a non-verbal, non-mobile child is just hard, frustrating, and sometimes just downright mundane.  The least we can do is thank them more often and maybe invite them over for some strawberry shortcake with our family.

Strawberry Shortcake Recipe (via Eating Well magazine)

Kirsten Isgro is a professor of Communication Studies at the State University of New York and the mother of 4-year old twin girls.

 

Graduating

Well, there’s no denying it: he’s graduating. Next week, on the 18^th of June, to be exact.

How did we get here so fast?

I’ve written here about the pain of senioritis, and how his imminent leaving-home has been impacting my emotional state – exacerbating my grief that Katie isn’t here to share in the festivities, and won’t be here to raise when David leaves. That’s in addition to the normal emotions that arise when the first-born is about to leave home. David is the firstborn, and now, he’s also the last - as my mom likes to joke (she’s an only child, herself) – he’s now become “the Alpha and the Omega.”

We have been attending awards banquets, which remind us of the many beautiful qualities that David embodies, and shares with his world, on a daily basis. He’s been nominated for, and has received, some lovely accolades, including a (partial) academic scholarship to a fine university.

We’re thankful for the gift of David in our lives, and we admire him.

With his graduation come new opportunities for me, and new challenges of heart and mind. Shall I finally put that book together? Shall I continue speaking for non-profit organizations, or take a break from that? Every time I think of stopping, another invitation to speak arises. I am happy to serve, but sometimes the speaking takes a toll. The story I’m asked to tell includes blessing and valuable life-lessons, but it doesn’t have “a happy ending.” I mean, it doesn’t have an ending yet, and it’s not all a happy story. But much can be learned from it (and funds raised for good causes), so I keep on saying “yes.”

I would love to have a deep, insightful posting for you here, but I don’t. Today, I’m filled with gratitude, joy, nostalgia, and peace in the awareness that one phase of my job is coming to a close, and another is about to begin. Many questions remain open for answers, but they don’t need an answer in this moment. In this moment, I am resting in joy and gratitude for David’s presence in our lives.

I pray that the end of the school year is filled with blessings for your family, too.

They

We all know They. We live by They's rules, or we fight They with the weapons we have, which are almost never as effective as the ones They carry and which They often use with such little regard for the consequences.

As I look through my blog and the comments left on it, I can see that while my daughter would appear to be the most frequent subject of my writing and of others' responses, there's also a clear antagonist.

They.

---

"They said my son would never walk."

"They told us that our daughter would never be capable of writing her name or reading."

"They never allowed him to sit with the other kids because They didn't see any educational benefit to him or his classmates."

"They never expected her to live, much less thrive."

"They've denied our claim… again."

"They objected to their kids being compelled to attend classes with mine. They don't want resources being moved to special education."

"They were pointing at me and making fun of how I walk. They didn't think I noticed, but I did."

---

They aren't all the teachers and doctors and therapists that our kids encounter. Hopefully They don't dominate our families or our communities. Indeed, in the best of times, They are in the minority, and their voices can sometimes be drowned out by those who do get it, who do believe.

But They are always there somewhere. They tell us what our kids can't do. They attempt to predict the future, one in which disabilities call all the shots. They look at our kids and see what can't be done. They withhold their resources, and their optimism. They set expectations low, and then They work to make those expectations a reality. Our reality.

Sometimes They are right. Perhaps They are right much of the time, at least on a technical level. And They certainly are very good at documenting their opinions and actions and creating the paper trail to protect themselves. They are smart, and They are omnipresent.

But if you, gentle reader, are a doctor or a therapist, a teacher or a family member, or even just a citizen, I have but one thing to ask of you. Just this one simple request.

Don't be They. Just don't.

---

Robert Rummel-Hudson is the father ten-year-old Schuyler and the author of Schuyler's Monster: A Father's Journey with His Wordless Daughter (St. Martin's Press, 2008).  He is also a contributing essayist for My Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kids with Disabilities (PM Press, 2009). His work has appeared in Good Housekeeping and Wondertime.  Robert's adventures with Schuyler can also be found at his blog, Fighting Monsters with Rubber Swords.

 

Good Enough?

Being  a parent is challenging, inspiring, breathtaking and exhausting. It wears me down and pumps me up all at the same time.

I love my children from the tips of their toes to the tops of their heads but they exhaust me physically and emotionally most days. In the past few weeks I have felt like I am running on a treadmill and there is no way off. I am exhausted and weary and yet I must keep on running. The treadmill feels gets faster and faster and I keep moving but I am not getting anywhere.

Everywhere I look there are other people who are also running all the time but they are getting it all done, they may be tired but everything gets finished. It seems as though they never feel  discouraged or as though they can not deal with more tantrum or that they yell at their kids when they try to climb the display at the grocery store, again.

When I stand in line to pick up my kids after school I look around at all the other mothers, they have it all together, they look good, their children are clean and their outfits match, their cars look like they just came off the lot. and no one runs into the road without looking for cars first.  It is a bit like a scene from a TV show and I am not only not in the cast but I was not even invited to the set.

I stand there waiting for my son feeling as though there is no way that I will ever have it all together. I have dirt on my knees from the garden, my car has not seen a vacuum in well over a year and I am lucky if my kid comes home with both of his shoes and without new holes in his clothes.  I am exhausted all the time. I am dreading the 4 hours until I can send them to bed. I am not looking forward to doing dishes, laundry or breaking up an argument. I do not want to find out about another bad day at school, a failed test or an incident with another student.  I do not want to make a exciting dinner and a fun after school snack like Joey’s mom does, there will be no crackers and pretzels made into a spider around here. There will be peanut butter on a rice cake and bacon, eggs and toast for dinner because P is working late and that is what we are having. You will play outside while I finish the dishes, bring in the laundry, watering the garden and getting ready for the meeting I have tonight.

I never thought I would be that mother, the one who never has time, the one who yells and gets frustrated when her children act like children. I want life to be bowl of cherries and I want to feel like I manage it all with grace, poise and charm instead of a loud voice, a tired sigh and “ why did you do that again!”

But life is not a bowl of cherries, it is hard, it is raw and this life is mine. I may not get anywhere on the treadmill this month, I will never be a TV show mom or even a storybook mom but I am doing the best that I can and at then end of the day that needs to be enough.

I am good enough.

J  writes about being a Mom at Stellar Parenting 101 where some days  she feels as though good enough is not enough.

A really good school

One year ago I was wondering how John would fare in public school as a 4-year-old with, well, with everything that was going on with him. Wondering isn't accurate: I was researching, worrying, being guided and inspired, hoping, conferencing–sometimes all in one day. John's health, his development, and the coming school year were occupying a lot of space in my mind.

Some time toward the end of summer, I got a phone call from a non-public preschool. He had been on their waiting list for so long that I had almost forgotten them. Would I come in and visit? Sure, I guess so. I wrote the appointment down with the same mechanism of numbers, paper, and ballpoint that had recorded the many adjacent medical and educational appointments in my datebook. But still, before I even hung up the phone from that first call, I felt some sort of cloud of significance approaching.

The 4-year-old classroom seemed small but the playground was majestic. The hallways were dingy but throughout the building there was a quiet strength, a soft strength almost enduring, like a song with phrases that succeed each other perfectly. The school was a good enough bet, and come September, John was enrolled there part time.

A lot happened over the school year. In fact, if someone had listed for me in the first week of September the many challenges we would face over the next nine months? I would have laughed. Or kicked a wall–or both. Challenges of many types, some that I had never even heard of before. And it turned out that the quiet strength and worn livingroomness that I had seen before the start of school were exactly what are needed for a preschool to be able to patiently and consistently serve a lot of kids with a lot of challenges for a lot of years. At first I was slightly confused by the fact that they didn't seem to serve a significant number of kids with special needs. They had a different definition of special needs that I couldn't understand; it was beyond the most radical word reconception I could imagine. But very soon, our family became a part of a lot of statistics and groups that fit into that different definition, and by gosh if John didn't thus happen to be at the place that could handle the whole package just fine. 

Place to park the wheelchair in class? Got it (right by the guinea pig cage, and walkers get parked in the hall). Social worker and director who have seen it all? Got it. Need emergency clothes for the kids? Got it, oh, and here's the extra canned food if you are short. Rad tunes on the centers-time boombox? Got it. Two separated parents for dropoff and pickup, with weird legal stuff changing every week? No problem. Extra baby bottle for a dehydration-prone child who can't cup drink and whose bottle got left 24 miles away? Got it. Administrators who are up-to-the-minute on local politic kid happenings? Got it. Fiscally accountable? Got it, if you're in a position to care. Just enough sand and mud and soap and water and paint and fake snow and pretend ideas and nap mats? Yep.

The only thing the school didn't have was paper towels, and that was only for one day out of 275, and staff were fine and had a system worked out involving hoarding and transfer to crucial points. There was soap in the guest restroom at least, so I just dried my washed hands on my shirt that day.

Through the tumultuous year, they could still serve John's educational and social/emotional needs and his significant special needs, and they could do it without batting an eyelash. No shame. No resentment. No strange looks. Just staff who were truly happy to see John every morning and who still seemed happy to be with him at the end of the day. Staff who had the patience to handle a multitude of routine or major challenges: all recess, all lunch, and as far as I could tell, all day. Creativity, calm use of skill, and love that I haven't seen used with groups of little kids anywhere else.

Because there, it's about the kids. I can't imagine anything else that would cause this kind of consistency and devotion in an organization. Honorable and touching things are often inexplicable to me. So that's the only explanation I can come up with for what I've seen at this place. It's just about the kids.

a conversation with my youngest child, age four

   "Little Child," my four-year-old, has despite his many health problems always been very advanced in his executive functioning, psycho-social, and verbal skills.  This is a sledgehammer of cognitive dissonance to the face when you see him in action given his diminutive stature alone, but if you've only ever mothered two developmentally delayed little boys and then have a child like my youngest it's downright surreal.


   All parents know that someday we'll have to answer some pretty uncomfortable questions from our children; it's part of what we sign up for along with poopy diapers, sleepless nights, catching vomit in our bare hands, and elementary-school music programs.  I've gotten off easy so far in that my children still believe that marriage (be it between a man and a woman, two men, or two women) is about nothing more or less than having help raising whatever children you have via parthenogenesis or adoption and not getting cold in bed at night, which they will continue to do for as long as I can keep that myth alive and/or until I feel they are developmentally ready to hear the more complete array of ways that one might end up a parent.

   When our children have special needs, our parental obligation to explain more and more complex things as our children get older can become a more difficult burden to carry than that of the average parent.  We have to discuss psychological testing, invasive medical procedures, adaptive or durable medical equipment, all of the ways that a body or brain can be different from those of most other people, and sometimes we have to talk about surgical risk, long-term prognoses, and treatable versus curable conditions.

   Little Child asked me a question recently that I couldn't answer, one I'd thought about a lot but wasn't expecting quite yet (not that it would ever be an easy converation to have).

   Mommy, will I still have my tubie and need formula when I'm a grown-up?   

   I told him that if his stomach didn't keep getting better, and if he wasn't able to start eating enough to stay healthy and strong, he might still have his mic-key button and need to take formula through it.   

   Well, but it is getting better and I eat a lot when I don't feel too sicky.

   Oh, crap, I didn't want him to feel like it was his fault!  I quickly said that he couldn't control whether his stomach would keep getting better enough for his body to let him eat more, and that I was proud of his eagerness to try new foods and his patience with his body when his stomach just wouldn't let him have a favorite food he'd been looking forward to eating.

   But grown-ups don't have stuff like that!  I don't want people to think I'm a baby!

   I told him that some people would never understand people who were different from them, no matter what made them different, either because they were afraid or because they had small little minds, but that plenty of grown-ups' bodies needed special help from tubies like his or different ones.  Your stepfather, I told him in a flash of inspiration, used to have a tube coming out of his tummy when he was a grownup!

   Really?

   Yes, really, my husband, who'd been sitting nearby listening, informed Little Child.  It went in right here, he said, lifting his shirt and showing Little Child the scar, which he inspected closely.

   Remember when we talked about your stepfather's kidneys, I asked Little Child.

   Yes, they got very sick and died.  Then he had to get a new kidney, and it was surgery, so they gave him sleeping medicine so it wouldn't hurt.

   That's right!  I high-fived Little Child and enthusiastically continued to explain that while his stepfather was waiting to get the new kidney--

   Why did he have to wait?  Why didn't they just give it to him right away?

   Oh, damn.  I quickly said that it had to come from another person and be just the right kind to match, and that someone who doctors couldn't make better had to decide before they died and didn't need their kidney anymore that it was okay for doctors to give it to somebody else after that happened, and that sometimes it took a long time for someone to make that generous choice whose kidney would work in the body of a person who needed one.

   But if his kidneys died, and he didn't have the new one yet, didn't that make the yucky stuff build up in his blood, like you said it would if the new kidney gets sick?

   Yes, I said, relieved to be off the topic of organ donation and wait times for today, and so he had a tubie that he would use every day to put special very clean water with medicine in it into his belly, and then take it out when it was dirty, and that cleaned his blood.  When he got his new kidney doctors took that tubie out, but he had it for a long time, and he still did everything he does now, he just had to do that, too.

   I still really hope I don't have to still have my tubie.

   I know, I told my baby, scooping him onto my lap.  So do I because I want you to be healthyhealthyhealthy!  I gnawed on his neck a little, and he curled up like a shrimp and giggled his baby giggle.  I stopped gnawing and said but y'know, you're healthy and happy right now with your tubie, so there's worse things than if you have to keep it, and you'll still be my favorite little hot dog, and then I gnawed on him some more.

***************************************************************************

   What difficult talks have you had with your kids about their diagnoses, prognoses, and need for specialized medical or behavioral help?  Let's talk about it in the comments.

 

MFA Mama also writes a personal blog that you can find here.

 

 

Once Upon a Time

Once upon a time
Their chests squeezed with all their might
To inhale life

 

 

 

Once upon a time
Their livers erratically managed
To maintain their lives

Once upon a time
Their bodies seemed amazingly and wrongly
Too small

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Once upon a time
Their mommy cursed her body and its inability
To sustain their lives

Once upon a time
Their tiny toothpick sized fingers wrapped
Themselves around my gigantic pointer finger

Once upon a time
Her eyes could not yet open
To see the world around her

Once upon a time
Her skin and eyes glowed so pumpkin orange
That she needed phototherapy

Once upon a time
Her heart rate flatlined and a team of doctors and nurses
Rushed to save her life

Once upon a time
A central line required her first hair cut
To save her life

Once upon a time
A generous blood donor donated O negative blood
To tranfuse the life back into her body three times

Once upon a time
Monitors measured breaths, heart rates, and temperatures
To alert their nurses of their vitals

Once upon a time
We spent long hours bedside at their incubators
To never miss set backs or much desired progress

 

 

 

 

 

Once upon a time
Praying for progress and hoping for miracles
Was a minute-by-minute ritual

Once upon a time
We experienced jealousy at what should have been
Even though it felt wrong to have that emotion

Once upon a time
Precious babies around our girls
Earned angels wings

Once upon a time
We thanked God for each new CC added
That didn't result in a residual or stopping feeding

Once upon a time
We praised the miracle of modern science
As apnea monitors blared in the dark of night

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Once upon a time
We had daily homework of OT, PT, and speech therapy
To make sure their bodies worked right

Once upon a time
We were forced to become members of a NICU club
We did not want to join

But with time and acceptance
We've learned that our former preemies
Are miracles who still need our special protection and love

And a NICU reunion reminds us that we are
Life time members of that NICU club who will always know
That former preemies will always be preemies inside and out who do not just catch up