Monday, February 28, 2011

Simon's Syndrome

At least that is what I've decided to call it. At this point, I think Simon has most definitely earned the distinction.

To back-track a little (it has been another insane week, in a lot of ways), we did meet with the Neuropschiatrist last week. And they did diagnose Simon with PDD-NOS, or Atypical Autism, because the social and communication challenges that Simon displays do fit rather well under that umbrella.

However, unlike most cases of Autism, where the cause is yet unknown, Simon's language comprehension and social communication disabilities are directly the result of his original brain damage and the subsequent developmental irregularities within his brain. To make a very long story very short (atypical of me, I know), Simon has a lot more wrong with his brain than we have previously been told.

The bright side, for a kid with his level of brain damage, Simon is doing great. Another bright side is that there are a lot of resources for Autism that simply don't exist for other categories of disability (like CP). The less bright part -- he has a scary lot of brain damage, and there is no prognosis because our amazing modern medicine simply doesn't understand the brain that well yet. And, he has Autism, which is still tough to say out loud. Or to type quietly.

Despite the fact that Simon is "atypical," there literally are no other options for diagnosis. Well, no other options until now and my invention of Simon Syndrome -- which is short for Hydrocephalus-with-VP-Shunt-Pediatric-Stroke-Left-sided-Spastic-Hemiplegic-Cerebral-Palsy-Epilepsy-Sensory-Processing-Disorder-Pervasive-Development-Disorder-Not-Otherwise-Specified-and-some-Food-and-Environmental-Allergies-and-Asthma.

Yeah, I like Simon's Syndrome better. He owns it, it doesn't own him. Practically unbearable cuteness is one of the most pervasive side effects. Just take a look for yourself.

Sunday, February 27, 2011

Great Expectations

This past week, Brian's grandmother, Lydia Marie Boltz Hatcher, the beloved matriarch of her family, passed away after an incredibly long and full life. She had five children, lived on three continents, and left behind dozens of grandchildren and great-grandchildren. There was great sadness at her physical departure, but also, a lot of gratitude and admiration for how she lived her life.

Brian and I traveled south to be with his family for the funeral. It was a lovely service, and great to be with family. However, as is the case with any large gathering of diverse people, you sometimes hear things you wish you hadn't. For example, the comment that Simon may never "live up to our expectations," specifically in relation to the possibility that he may not go to college.

To be honest, I've been a little emotionally fragile this past week, due to all the new "stuff" we've been hit with regarding Simon. Therefore, despite my New Year's resolution not to let "poorly-conceived-but-well-intentioned" comments bother me, I was upset by this. I had to make a fairly heroic effort (emotionally speaking) to talk myself down off my ledge:   
"Really," I said to myself "how many parents of perfectly normal kids can be sure they'll go to college?! I've known many children, from many backgrounds, at all levels on the scale of income and intellect who didn't go to college, or dropped out, or went late -- for all different reasons...."

Despite my best efforts to "let it go" (or at least compartmentalize it), those thoughts were playing upon the periphery of my consciousness during the toasts to Brian's grandmother at the funeral luncheon. As I listened to her family recollect the things that they most loved, appreciated, and remembered about their Mother, Grandmother, Great-Grandmother and friend, I was struck that not once did anyone mention education, career, or any of the other stereotypical "accomplishments" our society seems to expect of a person in order to consider them fulfilled in this life.

Instead, they talked about the food she cooked, the times she took care of them, the food she cooked, her funny and endearing quirks, the food she cooked, and her strong, determined personality. They remembered the time she gave up her own bed and cared for a visiting family member that had become ill. They remembered the way she drove too fast, and loved too fiercely (well, they called it being "stubborn"). They remembered the way she balked at being called a senior citizen until she realized it meant getting a discount. They remembered her faithfulness to her church. They remembered the way she welcomed everyone to her well-laden table and treated them all like family. I will always remember the way she called me "honey" with her beautiful French accent, and that she always had something nice to say about each of her great-grandchildren as she watched them play around her at family gatherings.

Not only had this formidable woman fulfilled her potential, she had set a high standard for the expectations of everyone who knew her, defining what it means to be a family. Most especially through the quintessential act of sitting at table, enjoying simple food expertly prepared, and making everyone feel welcome.

And I realized that Simon already knows how to make everyone feel welcome. His hugs and kisses and exuberant greeting are a gift to everyone he meets. His determination and strength are at the core of his personality and are an inspiration to me, to Brian, and to so many others that know and love him. For Simon, it is true that I don't have average expectations. I have great expectations for a long life well lived, full of love, some endearing quirks, and lots of good food eaten at a big family table surrounded by people that love him back.

Now, I just need to teach him to cook -- which should be easy, because he loves food. Just like his Great-Grandmother did.

Sunday, February 20, 2011

When I'm 64

This weekend has been a little tough. Friday the Neuropsych's office called and said they determined that no further tests are needed, they are ready to diagnose Simon with PDD. We are going in on Tuesday morning to meet with them and hopefully get more information and the start of a plan to act on.

Brian and I have been talking and trying to put a positive spin on this new information, but the words have been a little forced, and we're having to work extra hard not let the stress get to us. I know I've been a bit crabby with him, but he forgave me and tried to make me feel better by cleaning the bathrooms and washing my car (my, how the definition of romance changes when you've been married for a while...).

Additionally, Simon and I have both been sick (along with everyone else I know, enough winter!). This especially concerns me since we've been warned that break-though seizures are more likely to occur when a child has a fever.

So, tonight when I put Simon to bed, I felt tired and worried. Worried about a seizure, worried about the future. As I tucked him in, we were both quiet.

I know that there is so much that Simon cannot understand. So much I want to tell him, and that I wish he could tell me, but we simply haven't got the words. And I now "officially" know that this is because his brain is damaged in the area where communication and socialization skills are processed.

I know this, but I also know how much he does understand. Tonight, without needing words, he knew that I needed to be taken care of, so he wrapped his little arm around my neck and pulled my head into his chest. And he started to sing me our song.

When the children were babies, we would often sing them Beatles tunes as lullabies. Our favorite has always been "When I'm 64." Simon has heard this song since before he was born - in fact, Brian sang it to me while the doctors and nurses were prepping me for his cesarean. It has always been Simon's favorite bedtime song.

And now, more than ever, no matter what the future holds, I know I will always need him, even when he is 64 and I am 93.

Thursday, February 17, 2011

It's another.

Sorry for the "cliffhanger" yesterday. It wasn't intended as such. The post was getting incredibly long, and I kept breaking into tears, so I thought it best to stop and continue later (when I was feeling a bit less "bat shit crazy" to quote my very wise sister).


For as long as I can remember, I've been assured by doctors, therapists, teachers and friends that, while Simon is delayed cognitively and emotionally, and has myriad physical challenges, he isn't Autistic. After all; he's extremely affectionate, never seems over-sensitive to environmental factors, doesn't flap his hands, or have behavior problems (beyond immaturity) such a diagnosis simply wouldn't fit.

That may explain why, on Monday, when it was suggested that we needed to get an evaluation to look for communication problems, I at first thought that the fact that it was named the "Autism Diagnostic Observation Schedule" must just be some kind of coincidence. Perhaps the main reason for the test was to help Autistic children, but it could be applied to other kids' with communication problems as well? Like when they give you a drug intended for one thing, but you really need it because of a subordinate later-discovered side benefit.

Plus, when the doctor told me about the evaluation, he specifically said not to freak out. Therefore, he couldn't possibly be telling me that he suspected my son was autistic -- a statement like that would totally warrant some freaking out.

Instead, I was calm. I listened, and nodded along. I answered lots of questions. I agreed we needed to find out more.

Before leaving, quite reasonably, I summed up our discussion:

"So," I said, "you're saying that, from what you can tell right now, Simon is not intellectually disabled, but clearly has some sort of communication disability and we need to do another evaluation to find out more about that."

The doctor looked at me a little quizzically, and slowly replied, "Yes... that's fair."

Of course, at that point he may have been wondering if I needed an evaluation. Holy denial, Batman.

It wasn't until a couple of hours later, when Simon was in school and I was alone at my desk, that I started to replay the conversation I'd just had with the Neuropsychologist. I began to recognize that his questions, and the questions of his post-doc had become increasingly focused. I remembered comments they made about Simon not making eye contact in the playroom, and about how he didn't tolerate being redirected. And then I began to Google furiously. I looked up every reference to the ADOS test I could find, and nowhere did it state that the evaluation was used for anything except diagnosis of a spectrum disorder.

Then, I Googled Autism and discovered that there are 5 main classifications within an incredibly vast array of sometimes conflicting symptoms. There is Asperger's, "Classic" Autism (ASD), Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS) sometimes called atypical autism, Rett Syndrome, and Childhood Disintegrative Disorder. All of these classifications revolve around abnormalities of social interaction, communication and behavior. The amount of "markers" in which of those 3 categories an individual has, and the surrounding circumstances (medical or otherwise), ultimately dictate the "type" of spectrum disorder a person is diagnosed with.

It was as I was reading this that the post-doc working with our Neuropsychiatrist called me. She had conducted much of the evaluation, and had been a part of our final conversation. She was calling me to see if it was alright for her to email me an evaluation for Simon's teachers, and to see if, after I'd had a couple hours, I had any more questions. She said she and the Doctor had discussed our meeting further and they felt that they had raised more questions than they had answered. (I also think they picked up on my denial, but that's just a guess.)

Boy, did I have questions. I asked about the ADOS test, and my realization, that they were considering an autism diagnosis, was confirmed. Specifically, she said that from what we knew now (other tests, scoring and further conversations notwithstanding) the diagnosis currently on the table was PDD-NOS, also called atypical autism. With PDDNOS, the main difficulties for the affected individual were social interaction and communication. Precisely the areas in which we have concerns for Simon. I tried to push a little further, but she was responsibly non-committal and reminded me that they were still reviewing and gathering information, and that I could email her with questions anytime.

My voice broke over the phone as I thanked her for her time, and effort. I hung up and dissolved into tears the rest of the way. I don't know how long I cried.

It has taken me a few days to pull myself back together. As usual, my main coping mechanism has been to find out as much about PDDNOS as possible, as well as trying to rule out any other options that would explain our concerns and Simon's challenges. In doing so, I can't say I have found anything else that would come close to fitting Simon. But, I have found a lot of the indicators for PDD-NOS fit very, very well.

There are many, but here are some of the ones I think are most significant (so far):
  • Unusual responses to sensory experiences -- i.e. the Sensory Processing Disorder that out OT just diagnosed. To my surprise, it turns out that kids on the spectrum can be both hyper and HYPO sensitive. 
  • The way that Simon constantly, and very accurately, repeats dialogue from TV, or songs, or nursery rhymes. The way he repeats our statements when we talk to him, rather than really respond; or the way he sometimes repeats, delays, and then replies. (Ex. Mom: Do you want a drink? Simon: You want drink? then, a moment later, Yes.) This is called echolalia. (I should note here, that this is actually a good sign, as children displaying this disorder often gain normal speech in later life.)
  • The way Simon is often in his own world and does not seem to see or hear us. 
  • The fact that Simon does not understand reciprocal language or play. With peers, he plays beside them but never with them, unless it is a game of chase or rough house or some other gross motor play. 
  • Simon rarely seems to imitate or engage in any kind of creative pretend play. He tends to play with toys in atypical ways, as well.
  • Abnormal attachments to odd objects. Simon always has to have a tiny "something" held in his right hand. He tends to go on jags with exactly what the object is -- he held a piece of mulch for about a year, then legos, then barbie shoes. Lately he's been more versatile in his object selection, but whatever the piece du jour is, he gets VERY upset if you make him relinquish it.
And so, the more I look, the more I see. As you can imagine, I have an overwhelming amount of thoughts, feelings and theories on all of this, and I know I have so much further to go. So much more to experience, and to  learn.

Last week, when I was feeling overwhelmed after our long day at the hospital, I likened our journey with Simon to the storied yellow-brick road to Oz. I said that our road "wound dizzyingly far into a distance I wasn't sure I wanted to see." In retrospect, having now taken the next steps onto those lutescent bricks, the words seem slightly prophetic.

Though I know that Baum's inspiration for the road in the story is said to have come from an actual place near his home in Michigan, I wonder at the underlying intent of the color choice. Yellow is the color of jaundice, of sickness and fear, all of which I most certainly feel. But, yellow is also the color of optimism, of spring flowers dotting the green grass, of sunshine dispelling the darkness. That is what I am trying to keep my sights on. Where there is knowledge and understanding, there is hope and progress. I just need to keep putting one foot in front of the other.

Wednesday, February 16, 2011

If it isn't one thing...

For Simon, (and for his entourage) this past week has been challenging. From Monday-to-Monday Simon underwent an MRI, appointments with his Pediatrician, Neurosurgeon, and Neurologist, and a full-blown evaluation with a Neuropsychologist. Over and over, with each new appointment, we braced ourselves for the physical and emotional impact of so much intervention, and so much information (or lack thereof).

The Pediatrician's appointment was a simple pre-op and check-up. It was uneventful other than being reminded -- again -- of how much we deal with in regard to Simon that is simply beyond the scope of your average pediatrician. A person I once looked to for all the answers (Why won't the baby sleep!? What should I feed them and when? What does this cough sound like to you?), is now following my lead and conceding that in a lot of our current concerns, I know more than he does. It isn't comforting, but I am getting comfortable with it. It does help that he has taken on the role of "cheerleader." When I recite the litany of medical issues we have going currently, he takes on a sincere look of concern, nods and tells me that I'm doing great. Sometimes, it is just nice to hear that.

The MRI and Neurosurgeon appointments did not go as expected, in that there was a lack of information and a confusing disconnect from physical evidence and the traumatic events surrounding the onset of Simon's seizure disorder. The Neurologist was status quo -- except that I found out that some medications I was giving Simon (like Benadryl and cold medicines) can be harmful to a kid with Epilepsy. I'm not happy that I wasn't told sooner (it is NOT listed on the bottle), but at least I know now and fortunately, no harm done.

The Neuropsych eval was the biggie, as I have known for months that it would be. Several months ago, Simon's coordinating doctor at Kennedy Krieger had a frank conversation with us about Simon's developmental progress. Technically, you can only say that a child is developmentally delayed until he or she is about five, at which point a more concrete diagnosis is necessary for school services (as well as to simply know what you are dealing with and how best to proceed). This conversation was the first time someone suggested that Simon could be mentally retarded (yes, he used those words, it is a clinical definition). It was one of the most difficult things I have ever had to hear, and atttempt to fully comprehend, in my life.

To help us, he referred Simon to one of the Neuropsychiatrists at KKI who could conduct a full evaluation and provide us with a clearer picture of Simon's IQ, as well as make a diagnosis and recommendations for future therapy and education. Being one of the best facilities in the country, KKI was booked out over six months in advance (as usual), so it wasn't until now that we were able to get in for the eval (though we did briefly meet with the doctor before Simon started the CIMT program).

Since then, Brian and I have been trying to come to terms with the probablity of an MR diagnosis. This was extremely difficult, made more so by the fact that we both highly prize our intellect. Olivia's burgeoning intelligence has been one of our greatest points of pride. Knowledge, creativity, and wit were very high on our list of important things.

So, how could we cope with this difference in our beloved little boy, within this narrow realm of thinking and valuation? It took time, and we had to completely rethink views and redefine values. We had to find a new way of looking at the world. Over these eight months we found our new normal, as we have come to call it, and we are truly better for it. We went from high-minded to open-minded and nothing but good can come of that transformation; though it is, and will always be, a work in progress.

The result was that, two days ago, when we finally sat down to discuss Simon's potential diagnosis with the Neuropsychiatrist, I was braced for a full head-on collision. But, that didn't happen. Instead, he told us that from their tests, they didn't think Simon fit the definition of MR. He had a lot of pre-academic skills -- labeling vocabulary, identification of shapes, letters and numbers. He was clearly learning and retaining information at a level close to age-appropriate (though they qualified this by saying it would take a few more weeks to completely compile test results).

This was, of course, great news. A huge relief! Not normal, but close, and learning and retaining information! I knew he was -- we'd worked on those same simple concepts like drill sergeants at home, at school, and at therapy for months -- years, even. And though progress had been slow, and hard won, it felt rewarded.

But, hang on a minute. Progress was slow and hard won, the result of months and years of work and therapy, and the best we had was close to age appropriate...? When Olivia was five she could read and write simple books and I had little to do with that at all... it was a naturally occurring event! What gives? If he's almost normal, why can't he understand us and talk to us as a "normal" child would? Why can't we converse? Why can't he follow simple directions? Play with other children? Function as needed to survive?

That was when the tractor trailer hit me from behind.

The doctors agreed with us that all of those anomalies were present. They agreed that Simon has something very wrong with his ability to communicate and interact -- so pervasively so that they felt the amount he had learned and retained was remarkable, and they gave us full credit for being good parents and having a great team in place to help Simon as much as possible. They told us that Simon is a very complicated child, and despite dealing with so much, we are on the right track. They told us to keep doing what we are doing, because clearly it is working. They also told us they want to give Simon one more evaluation. The ADOS evaluation, a speech-language test that would help identify the issues better...

So, what does ADOS stand for? The Autism Diagnostic Observation Schedule.

{To be continued, tomorrow, I think.}

Monday, February 14, 2011

iSimon's Top 10 iPad Apps

Earlier today we met with one of the Neuropsychologists at KKI for an extensive evaluation. (I'll blog more about that after I have had the chance to process it). Aside from the eval, Simon got the chance to show off his mad iPad skills to the good doctor. At the doc's request, here are our top 10 favorite iPad apps (so far). These are good for special needs kids, but also (I think) good for early education in general. Many of these apps can be found for the iphone as well as the ipad. Enjoy!

1. iGo Potty: Free download from Huggies. This app allows you to program timed alerts, add a picture of your child, and has a reward chart built in. Every success gets a "sticker" and ten stickers wins a cute game. Simon now sings the huggies pull ups jingle spontaneously, as well.

2. iWriteWords: This application has adorable graphics that encourage children to trace letter forms, one step at a time, by following a dot-to-dot pattern made by a little crab. The letters and sounds are also repeated multiple times. There are options for upper and lower case letters, numbers, and simple words.

3. Super Why: from the PBS kids show, this app is also about letter recognition, writing and pre-literacy skills. The characters guide you through a series of games where you find missing letters, trace them, and then put them back in their proper place in the context of a story. The graphics, music and animation are all very slick and worth the extra few bucks this app costs.

4. Interactive Alphabet by Pikea St.: Super cute and engaging graphics and highly interactive animation accompany each letter. The child engages with the letters through sound, motion and cool visuals.

5. AutismXpress: this is basically a screen with a series of icons showing faces with various emotions. The child presses a face, and it takes up full screen, animating the feeling. This is a nice way to talk about emotions, explore them and even have your non-verbal kid show you how he/she is feeling. There are also some funny pics -- hiccups and burps included.

6. Sesame Street "The Monster at the End of this Book" featuring Grover: I don't know about you, but this was one of my favorite books when I was little. This interactive version is wonderful, and stays entertaining after many many reads (like the book!)

7. Handy Manny's Workshop: Another paid app, but you get four "games" for the relatively low cost. Coloring, FInd it, Match it, and (Simon's favorite) Puzzle it. You can set the level of difficulty for each game, and each game has multiple options within it. The graphics are disney-quality and therefore more engaging than some of the other free apps.

8. Fish School by Duck Duck Moose: Schools of cute fish make up letters, numbers, and shapes. There are color identification activities, free "play" options (where you can move the fish around by tapping them), and two games of comparisons (differences and matching)

9. First-Then: This is a picture-scheduling app. If you've got a special needs kid, chances are you've encountered the picture schedule. This application allows you to create and customize specific routines and schedules for your child using real photos.

10. Elmo's Monster Maker: No educational value here. Just pure silly fun.

If you have any favorites, or suggestions -- please share!

Thursday, February 10, 2011


On my way to class a couple of days ago, I had the pleasure of bumping into a colleague I don't get to see too often. She is lovely, kind, and smart; one of my many acquaintances I've always wished I had the opportunity to know better. Therefore, I wasn't surprised when she told me she'd been reading the blog, and she had kind things to say in support of Simon and myself.

But there was one comment she made, that the more I thought about it, the more it surprised me. It surprised me by how good it made me feel, and how truthfully it resonated.

Being the mother of a child with challenges, I get a lot of well-meaning encouragement and empathy from friends, acquaintances, and sometimes even strangers. Many times, the comments are really nice and I always appreciate the intention behind them. However, there is one comment I hear frequently that consistently makes me wince (inside), and at one point made me doubt myself and my faith. It is the comment, the idea, that "everything happens for a reason."

For years, I struggled with this concept. That there was some cosmic or spiritual reason that my baby had been given brain damage, and that I had been chosen to cope with this particular challenge. That there could be some intention behind it. Could God have done this to us? On purpose?

Well, no. Of course not. It took me some time, but I came to understand that there isn't a reason for many of the bad things that happen in the world. No rationale for the pain and suffering of so many people, for so many causes. They just are. Good things and Bad things happen, sometimes for reasons we can see as the result of action or inaction, but often for no discernible reason. People get sick. People win the lottery. People have accidents. People have "lucky breaks." There is loss, and gain, and joy, and suffering and sometimes there is no one to blame or thank for it.

That's a tough concept to process for many of us, I think because believing it would leave a sort of hole in the fabric of our mental security blanket. We want to believe that there is some kind of control "out there," someone or something directing the chaos so we don't feel at risk ourselves. If we are good people, bad things can't happen to us, right? It just wouldn't make sense. And when bad things DO happen to good people, it must be for some higher cause, like in the stories of long suffering Saints and Cinderellas.

All this is to say that, while I had a rough time with the idea that things happened for a reason, I also had trouble with the idea that things didn't happen for a reason. One concept felt cosmically cruel, and the other felt spiritually vacant.

However, with a little help from a well-placed comment from a colleague, I think I've finally got it. She said she believed that everyone on this earth has a purpose.

Purpose. Now this is a belief I can get behind. Life is about choices, about choosing to exercise our free will no matter the situation, and the intrinsic ability of each individual to do good, find hope, and live well no matter their level of ability or personal situation.

Maybe every situation can have a purpose as well. There are always lessons for us to learn, ways for us to grow, and opportunities for us each to do good, find joy and create love and happiness.

Not everything has a reason, but everything, and everyone can have a purpose. What it is, well that part's up to you.

Monday, February 7, 2011

Ruby Slippers

At 5 am, we woke Simon to give him his anti-seizure meds and a drink of water, before getting ourselves dressed and ready to go to Hopkins for our 7 am MRI appointment.

I'd packed our bags and set out clothes last night for what I knew from prior experience would be a very long day. Coffee in hand, in the early morning darkness, we drove downtown in relative quiet. Upon arrival, we wound our way through the massive hospital complex (a city unto itself) and in fairly good time we found ourselves within the underground tunnel housing the MRI facility.

This time, the whole procedure went smoothly -- a stark contrast to the last time we did this; when it took five adults and four attempts to get an IV into Simon's tiny arm. When it took over an hour for him to succumb to the sedation, and we almost lost our appointment altogether. Now, Simon weighs enough to get the gas anesthesia, and it took mere minutes for him to go under. He was disoriented and agitated when he woke, but some apple juice and cuddling brought him around quickly. We were out of recovery and off to get bagels in far less time then I'd anticipated.

The next leg of our hospital adventure was not as streamlined. At the Neurosurgery clinic, the group of world-renowned surgeons keep limited office hours, therefore the scheduling staff call patients to inform them when to come in -- there is no such thing as making a mutually convenient appointment here. Just the same, people from all over the world crowd the sprawling reception area, where you have to take a number just to see the receptionist.

We're used to the routine here, as well. Simon was a still bit loopy from the anesthesia, and his magnetic shunt being out of calibration probably didn't help, but he did alright. We were prepared with plenty of snacks, toys and videos. Finally, our turn came, and we were guided into the labyrinth of exam rooms, light box-lined hallways glowing with blue and white scans of brains and spinal columns, and austere meeting rooms with ugly pink chairs.

We were ushered into a private exam room, and when our Neurosurgeon came in, I felt a wave of nervous anticipation. I've always felt lucky that Simon's surgeon is so knowledgeable, his group of doctors recognized throughout the world as one of the best. That we are local and he agreed to see us always seems like a minor miracle. Here, at last, I anticipated some answers. If anyone could tell us what was happening in Simon's brain, why, and what to expect next, this was the guy.

Here at last was the great Oz, and we were there to ask for help -- his brain, my heart, our courage. How appropriate.

So, when the doctor matter-of-factly announced that the new MRI looked the same as the scan we had done last year, pre-seizure, I was surprised. Nothing had changed. The shunt looked fine, and though the existing damage from the initial stroke was still there, there wasn't anything else. No new scar tissue or other irregularities to explain the sudden onset of Epilepsy. No new damage caused by the 2 hour seizure.

At first, I felt relief. I'd been so afraid to hear that more damage had been done. That more black holes had appeared on the scan. That the sequella from this last traumatic event was just starting to make itself known.

So, unexpected but a good answer. No more damage, nothing worse. Yes. So, Simon's behavioral changes are definitely due to the medication, not an altered personality (though we were cautioned not to consider changing a medication that was working). The shunt is still doing its job just as it had before. Good.

But, hang on a minute. Answers. I needed them. What happened? WHY seizures, why now, and why at such frightening life-threatening intensity? Why the unexplained bout of additional temporary weakness on his left?

In answer, the man came out from behind the curtain. The assuring, knowledgeable, and brisk demeanor of our Wizard faded like so much smoke. With a shrug, a smile, and a slight chuckle, he answered us with a question. Why hadn't Simon's seizures started earlier? Why now? Why not? Simon's brain is not normal. Abnormal brains do abnormal things, and, it turns out, even the best Neurosurgeons in the world don't really know why.

Okay, we don't know what caused it... but why no damage from the prior event? Why no worse outcome when everything I'd read indicated that was typical. How did we get our miracle this time? Another shrug. Another smile. "Kids! They surprise you."

I did, however, get one final answer, though maybe not the one I was looking for. Should we expect more seizures and other unexplained events in the future?  Yes, most likely given what we do know. We're also probably looking at other learning "differences," akin to our language delays and sensory disorder. But what, and when, who knows.

Smile. Shrug. And that was that.

The Surgeon and his assistant reprogrammed Simon's shunt with a magnetic "tuner" (I'm sure it has a more technical name, but that is what it does) to get it back to the "tightest" setting of 2.25. They wished us luck and said they'd see us next year, for another MRI and another check up. Hopefully, it will be an uneventful year.

Surrender Dorothy. Or, follow that yellow brick road, and stop asking what's over the next hill.

On the way out, I felt curiously deflated. While I hadn't wanted to know about more problems, I had hoped to find some answers. I wanted to understand what had changed in my son's physiology that would account for our new worries. Maybe I just wanted SOMETHING to blame. Something specific, a witch whose name I could invoke when angry, frustrated and scared. Something to focus on to give myself an anchor, however false or irrelevant, to regain a little lost control over the universe.

On the way down the hospital corridor that opened out to the reception area, I felt the sting of tears prick my eyes. I hate to cry in public, to lose even a little control, or to be less than completely strong. As I rapidly blinked back my tears, I got the familiar eyeful of reasons to stop feeling sorry for myself, and my son. Children and adults waiting for their turn to see the Neurosurgeon. Many looked as normal as we do (or more so), but as always, there were those individuals so profoundly affected by their particular brain abnormality that they weren't able to move at all, or even process their surroundings.

I found myself wondering if their families were there, like I was, on a pilgrimage to find answers. Why bad things happened senselessly to the ones they love. Why their beloved faces such unfair challenges. Like me, did they question how they would be able to help, if they couldn't understand the source of the problem?

I wondered if the surgeon said the same things to them that he said to us. Did he peek out at them from the safety of the curtain we put him behind, with a shrug and a smile. I wondered if the surgeon felt badly, knowing that so many people here were looking for him to be their wizard. Hoping he had magic and miracles, when sometimes all he had were questions, and the sum of his varied experiences. Abnormal brains do abnormal things and they don't really know why. They don't know why the same condition or damage can affect one person mildly and another profoundly. They don't know why some people recover, gain or regain abilities, and others do not.

This once, empathy didn't make me feel better. Nor did I feel less empty realizing that I was far from alone. The grayness of the hospital and the contrast between the humanity of the patients and the impersonal staff felt starkly oppressive. The great and powerful Oz had no answers for me today, and my yellow brick road was winding dizzyingly far into a distance I wasn't sure I wanted to see.

Thank goodness for ruby slippers. We went home. We hugged, and I let myself cry. Overwhelmed by my stormy emotions - relief, and aprehension in equal measures, anger at myself for failing to be positive when I should be grateful. I let it all just be.

I put in a video so a tired and slightly loopy Simon could relax, and my sister called to check on us. She actually understood my convoluted mixture of emotions and helped me sort through them. I hung up and felt the emptiness lessen. I felt less unreasonable, and my flying monkeys of self-doubt were temporarily quelled.

At that moment, a particularly silly scene in Simon's video began. From the sofa came a deep, rolling belly laugh. Simon's contagious mirth bubbled and overflowed and I laughed with him.

He is okay. I am okay. There are rainbows to be found.

Thursday, February 3, 2011

In the groove

It's been a busy week so far, and it isn't over yet. The CIMT program is complete, and I've started back to classes. The kids have only had one snow day this week, and a new babysitter/mother's helper has started helping with Simon a couple of mornings, so I can get a little more work done and go to class. Which is good, because design work has picked up in a big way this week as well. Projects that have sat on the cold back burner for weeks (or months) are suddenly simmering away. Brian has been out of town the past two days; visiting his Grandmother who is, sadly, quite ill, so I've been single parenting as well (speaking of which, I sometimes wonder how single parents do it. Their ability to fly solo and stay sane on a daily basis is so incredibly amazing to me. You ROCK single parents!)

Aside from our concern over Brian's Grandmother's heath, it has actually been a good week. Overall, I seem to function better when I am very busy -- I feel more "on" and able to conquer whatever task is in front of me. Maybe this is a Laura-centric sensory issue. I have to reach a certain threshold of activity in order to be completely engaged. Hypo-Busy-ism. Or Hyper-Competency-itis.

Our optimistic mood at the end of the CIMT program has carried over, and we've been working on ways to use what we have learned in SImon's day-to-day life. Earlier this week, I sent his iPad to school with him, and it seems to have been a hit. They've asked we send it in just once a week for now. We are also getting ready to start back at the Loyola Clinical Center's Speech Program (a teaching program), and I have already spoken to the graduate student working with Simon this semester about finding ways to incorporate the iPad, and technology, and sensory stimulation in general into her sessions with Simon. It was a good conversation, and she seemed both receptive to and a little excited by my ideas. She is already researching more apps, techniques and processes to better meet our little guy's needs and I'll be sure to share what we come up with.

At home, we've incorporated lefty into a lot of the small task that make up Simon's day. For example, every morning when he gets his gummy vitamins (those things are delicious), he has to use his left hand and a pincer grasp to pick them up (I literally hold righty back). When he asks for a toy, if it isn't too heavy, we make him not only use his left hand to grab it, but we hold it up slighly out of reach so he has to stretch his arm out to get it. These are little things, but we're hoping that if we incorporate enough small actions, with enough frequency,  that the cumulative effect will be that he sustains the gains he made longer. We'll see. In simple play I see him spontaneously using his left hand more often and that gives me hope.

It's this hope and optimism that I am going to try to hold onto through Monday. Monday morning, Simon has an MRI, for which he has to go under general anesthesia, followed by an appointment with our Neurosurgeon to both reprogram his magnetic shunt (it gets out of whack from the MRI machine), and to review the brain scans. The reason for the MRI is two-fold: to see if there are any (more) irregularities in Simon's brain that could have caused the sudden onset of siezures, and to see if there was any additional damage done by the highly unusual and dangerous 2-hour seizure he survived this past November.

I'm nervous. I hate to put him under at any time, but, additionally, I'm worried about what the results of the MRI may show. Like a monster in the closet, I don't want to look, in case my worst fears are true. The little girl in me wants to cancel the appointment and cuddle with Simon under the covers instead, but I know that is irresponsible. I know that (in the colorful words of one of Brian's favorite aunts), I need to put my big-girl panties on and take care of what needs doing. And I will. And I will also remember how well Simon is doing, how far we have come, and that, no matter what the outcome, I have dealt with way worse and come out stronger.

Then again, maybe it's time to implement a little retail therapy and go buy some new, really kick-ass panties.