Day 4: Resolutions

The B6 vitamin came, and not a day too soon. We had a house full of guests for lunch today, and I have to admit I was a little worried about Simon's behavior. Like most little kids, he finds sharing his stuff to be a bit, um, challenging, but with his quick temper it has become more than a minor sharing lesson. Fortunately, though, it wasn't an issue. He has had 2 doses of the B6 so far, given in conjunction with the anti-seizure meds, and he definitely seems more mellow. Right now, in the peace and quiet of the late afternoon, he is cuddling with his sister while watching her play Mario-Kart on her Nintendo DS.

Ah, peace.

If I am honest, my worries about his behavior in front of guests goes deeper than concern over an afternoon of sharing toys. For the past couple years, since his cognitive differences have become more apparent with his growth and the subsequent comparisons to other same age children, be they strangers, friends, or relatives, we've had a lot of 'splainin' to do (use your Ricky Ricardo voice for that last line.)

Why isn't he potty trained? Why can't he answer my questions? Why doesn't he want to interact with the other kids? Why does he keep repeating the same phrases? Why does he stare off into space so much? What is he wearing on his leg -- did he hurt himself? Why?

Why, indeed.

How best to answer is the bigger question. When the diagnosis of the C.P. was still fresh, and the cognitive problems still emerging as more than a simple "delay," there were a lot of questions and a fair amount of friction -- from within our own little family. Turns out, Brian and I handle this sort of thing very differently. I tackle any emerging issue head on with the ferocity of the Momma Bear I am. Hours of reading and research, pushing the difficult questions forward in appointments with doctors and chasing the specialists out into the hallway if they haven't adequately answered my questions, or if I simply want them to explain the brain scans to me AND the resident they are teaching.

I've surprise a lot of doctors with my tenacity and my knowledge (I am only a graphic designer, after all -- thank God I took Latin in High School or I'd never have figured out what the Neurosurgeon meant by "sequella"...). I drive my husband crazy. Brian prefers a wait-and-see approach. He would rather wait for solid proof of a problem then look for symptoms and self-diagnosis. He'd also rather not discuss the problem with others, but keep things in our circle to be dealt with as needed.

Things changed a couple of months ago, after the “Big One.” The week before Simon's status epilepticus seizure we were in the ER due to an unexplained weakness on Simon's left side (more so than usual). After a chat with a Neurology resident, I was pretty sure it had been a nocturnal seizure. I'd long suspected seizure activity (the absence kind), but Brian had not seen it himself, and so thought that maybe I was going a bit too far. I'm sure you can imagine the sort of contention this caused.

To our credit, however, we did manage to have a really good conversation (after a little yelling and crying). We were able to talk about the feelings that led us each to process these complex issues in such different ways, and we agreed to try harder to support each other. Good thing, because in the week that followed we needed every bit of strength and resolve we could muster as a couple to get through the difficult hours ahead -- many in the darkness of not knowing if our little boy would ever wake.

But he did, and we got though it, and here we are on the other side. It is New Year's Eve and I think that if I am going to take anything with me out of 2010, to carry into the new year, it is going to be the resolution to care a lot less about the answers to the questions. Well, maybe not the answers -- I'm still going to doggedly track down any lead I can find that might help my little guy. The reactions of others to the truth of our sitation is what I am going to stop worrying about.

Over the course of the last year, I've been told by potential babysitters that Simon's issues were too much to handle. I've been told both, that I should be doing more, and that I should be doing less. I've been told that Simon is ready for things I think he isn't, and not ready for things I think he is. Once, when explaining his level of cognitive disability, I was told that we would "love him anyway."

Well, there is no ANYWAY. And there is no right, and no wrong, and it IS a lot to deal with, but -- to quote a favorite nurse -- "It Is What It Is ( IIWII, pronounced eewee)".

So this year, when I argue with my husband about how to handle something, when a stranger or a well-meaning loved-one says something hurtful, when I feel defeated or overwhelmed, I'm going to resolve to remember that it IS what it IS and that IS okay.

Even if it isn't.

I'm also going to remember that for every troublesome encounter, there are twice as many blessings. Simon isn't in pain and is happy. Olivia is incredibly compassionate and wise for a child of 8. My husband and I can walk through fire and darkness and still hold hands in the light. And there's you --  family, friends, dedicated sitters, therapists and teachers, acquaintances and maybe even people I don't know, who care enough to follow the progress of one little boy.

Blessing to all in 2011, it is going to be our best year yet.

Day 3: A Barrel of Monkeys

So, we've officially been kicked out. Brian and I, that is.

I know that this is best, it is the same situation at school, and at the speech clinic (though I can watch from a 2 way mirror there), and even at "You Can Do It Too," his physical therapy/gymnastics program. When Mom and Dad are around, the little guy is constantly looking to us for a way out of doing whatever it is he needs to be doing. This is true with most kids, and it isn't that we aren't welcome or excluded, we just need to let separation do its magic.

Another parenting lesson. Give the kid some space and you will see what he can do.

What he is doing is amazing -- truly. In the space of a day he has moved past being upset about his cast (well, okay, we still hear a little complaining), to trying to find ways to make the left side do what he wants it to do. He's working very hard to isolate fingers, grasp, and turn a limb that had heretofore been nearly unresponsive except as a prop.

We did get to join in on the last couple tasks of the day, as we discussed our weekend "homework" with his therapist. We had a snack of goldfish and juice, using only the left hand to practicing raking and grasping and pulling. Afterward, we hung monkeys from the "Barrel of Monkeys" all over the basketball net and then put them back "to bed" in the barrel. This was Simon's idea, and his therapist ran with it.

Watching the KKI therapist in action is really amazing. Like anyone with a special needs kid, I've seen a LOT of therapists (PT, OT, SLP.. you name it) in action. They are all nice, well-intentioned people that love kids and try their best to help. However, some folks are much more effective than others.

I've been lucky to work with some wonderful people. And, from what I have observed, there are a few key traits that go into making a great therapist in any discipline. One is the ability to get down to the level of the child and engage them, through language, eye contact and physical contact. For each kid, at each stage of development, this is different but equally important. I tend to think it's like being at a cocktail party with a bunch of people you don't know. You are going to be drawn into conversation with the person that leans in when you speak, makes eye contact with you, and carries themselves in a way that seems happy to be there, relaxed, confident and open.

The other really key component is the ability to be flexible. If something isn't working, if the kid isn't engaged, or is simply getting too frustrated to function, stop what you are doing and try something else. I can't tell you how many times I've seen a therapist doggedly press on with whatever activity they meant to do, only to completely lose the child they were trying to help in a puddle of misery. That doesn't work for anyone. Use the cues that the child is sending, if they are interested in a particular toy, modify the play to suit the therapy you're targeting.

Of course, the above isn't easy and takes a considerable amount of creativity. Often getting to the point of a functional relationship like that takes a lot of time, and a lot of dialogue. A constant work in progress. I think that is why I'm so impressed that the therapist working with Simon was able to hit the ground running, and I think that is also why we've seen such immediate progress.

She's careful not to let him get too frustrated with any task, so he keeps working. She follows his lead and let's him select activities which she adapts to include therapy, but he thinks it is his idea. She's on his level and talking to him constantly with praise and silly songs and laughter, so he thinks he's playing.

I'm going to have to find a way to implement this theory in my classroom... I wonder if the college students would enjoy "Barrel of Monkeys?" And if I can adapt it to teach good compositional skills?

The Gestalt of Monkeys.. coming soon.

Day 2: ¡Ayúdeme

So, today was the "big" day we'd been most dreading -- the initial casting. Getting the cast made was every bit as difficult as I'd imagined it would be. Admittedly, I've had some experience with this, since a cast is required to make AFO's, and we've been through that three times now. Each time there is screaming and crying, a heroic effort by Simon to escape and plead for help (in both English and Spanish thanks to Dora & Diego), matched by my equally stoic effort to soothe him, hold him down, and keep him from maiming the individual working on the cast.

This time it took four adults. Myself and Brian holding onto him, and two therapists working on the arm. It was a big challenge, he's quite strong for a little guy that weighs only 30lbs, and he is quite adept at wiggling out of tight places. Trying to get the cast on correctly was tricky, and then removing it to prep it further was even harder.

Brian and I are both a little surprised by the cast itself. From photos we'd seen of the program, we were expecting a full-on cast in our choice of rainbow color. Apparently, that isn't how it is being done now. What we have is.. interesting. They use a waterproof material to make the cast (which is great), and then they remove it (very confusing for the small child in question), trim off the rough parts and tape up the edges with a waterproof tape, finally  re-inserting the child's limb and securing it with electrical tape (in our choice of rainbow colors). Practically speaking, I understand that the desire is to be able to remove the cast to check the skin and then re-use the same cast, but the result looks like I tried to set Simon's arm myself with paper mache and duct tape.

But, never fear. I'm working on a cosy for it. So far, I've found a Paul Frank pirate-themed knee-high sock I think may work, if I can trim and hem it properly... Heck, maybe this will lead to me opening an Etsy shop full of cast-cosies.

Yes, I am that shallow.

The BIG surprise of today is that Simon has almost immediately started adapting. As soon as he'd recovered himself somewhat therapy began, with a walk up and down stairs while attempting to hold onto a railing, and then pressing elevator buttons (a favorite task on any day). I expected a fair amount of resistance to using the "other" arm, and honestly, with me in the room there were a lot of tears and wanting Mommy to "hold you." However, after I finally accepted that I needed to go and hide (within earshot), and after a few failed attempts at getting the casted side to do anything (and a bit more crying), Simon just went with it. He is really trying to make this work and I am amazed.

But, I should have known. Is there anything like the resilience of a child? Even under the most trying circumstances, they will find a way to be a kid. To be present in the moment. To play, eat goldfish crackers, and press all the buttons on the elevator.

I have so much more to learn from that.

Night 1: Nerves

I've never vomited because of nerves, until now. Brian and I both had trouble getting to sleep tonight, thinking about what tomorrow will bring, but after I finally fell asleep my arm being in an uncomfortable position woke me up. This, of course, started a torrent of thoughts, and well, here I am at 2 am feeling better for having a bit of literal upheaval.

We've been on the waiting list for this therapy program for a over a year. For all that time, just as we were looking forward to any chance of improvement for Simon, we've been dreading the hardship this would present him. He only has one good working arm and hand to work and play with (which is more than some children have and we are grateful!), but now we are going to take that away, and he won't understand why.

I remember when we first got the AFO for his leg, he cried and cried to wear it. He kept asking "Why Mommy?" but of course couldn't understand the answer. It broke my heart to make him uncomfortable, unhappy. And that, we could take off for breaks, and it didn't impede his movement but helped it. This... is full time and meant to make things more difficult.

But. He got used to his "super boot." We will get used to this, too.

Day 1: Nothin' But Net

Today was a getting-to-know you and filling-out-forms sort of day. We went over Simon's medical and educational history about four or five times, and met the folks who will primarily be working with him - an OT, a PT, a Speech Pathologist, and a Nurse. Everyone seems really great. Very professional, pleasant, and patient with a little guy who was not on his best game today. We had at least four melt downs during the 2 hour evaluation, and no, they weren't because he lost at basketball.. or because he got his hands tangled in the net (oops...).

Behaviorally, we've been having some issues for the past six weeks, since Simon had the "status epilepticus" seizure (for about 2 hours) that necessitated his hospital stay, and the subsequent seizures that diagnosed epilepsy. The best drug to treat him with is Kepra, it is the safest and most effective medicine, and with it he hasn't had any seizure activity -- something we are truly grateful for, since it is nothing short of a miracle that Simon is still with us after what his little body went through. To be honest, we're terrified of a recurrence. The best analogy I have is that it feels like living on a fault line AFTER already having been through "The Big One." If I could move back to stable ground I would, but we can't, so bring on the seismic loading!

The fact that the Kepra is working is wonderful. The side effects are not. Because of the way the drug is metabolized, it causes a drop in serotonin, a "feel good" chemical in the brain. In adults, this causes depression. In kids, it causes increased irritability and defiant behavior... So, our once easy-going little guy now has a hairline trigger for full-on meltdowns. The first one he had after his release from the hospital was so terrifyingly intense I packed him into the car and took him to the pediatrician; I was convinced something was horribly wrong. We've been told that this may get better. We have seen some improvement, and it has also been suggested that enough B6 could help, so, I've ordered some (will let you know how that works!). In the meantime, we're working on helping Simon cope with his frustration and find ways to express himself without, well, screaming at us.

Anyone with a toddler knows about tantrums. They really do boil down to the child's ability (or inability) to communicate and feel understood under stress. The best tactic I've found (in case you need one), is to get on eye-level with the little maniac and use the simplest emphatic language possible to identify their emotion. For example: "Simon is MAD, Simon is SO MAD." After a while, they get that what they are feeling is called MAD and that you get that they are REALLY MAD. Then, they feel a little better. That's when you start with, "But you are OKAY. You can CALM DOWN. Let's take a DEEP BREATH." and  you demonstrate said breathing technique until  you are both in a better place. [For more on techniques like this check out "Happiest Toddler on the Block" by Dr. Harvey Karp. I found it pretty helpful (if a little silly in parts)]

For a kid with a communication disability this is really, really hard, but it was working! We'd been tantrum-free for months and when Simon got upset he would tell us how he felt, say that he "wanted to calm down" and started deep breaths on his own. Now, add the chemical imbalance and this has become damn near impossible. Tomorrow, add the casting and I'm talking about mommy going through a lot of wine...

(Sigh.)

Well, two steps forward and three (or four) back is how parenting sometimes goes, even under the best circumstances. Here's toasting a giant step forward into the unknown. Until tomorrow (the big casting day!).. thanks for coming with!

Funny name, eh?

And so, a blog is born.

For the record (and this is a record!), I do not think that the world needs another mommy-blog, far from it. I personally know at least a handful of fantabulous mommy-bloggers -- they are all amazing, successful and incredibly interesting to read, and it is an intimidating prospect to even consider tossing my hat into that ring! And yet, here I am. Why? Because, I think, I might have something different to say.

Which is perhaps the best place to begin -- at the difference and why I'm here, and how I hope that ultimately this little project will help me and my family to reflect (or vent), learn from our experiences, and maybe it will serve to help other families with children that have differences and, therefore, require a slightly different path to help them on this journey of life.

I'm a 34-year old working mom. I'm a graphic designer, and a part-time teacher at a local college. I do a fair amount of yoga, I like to cook, and I have incredible taste (kidding, sort of..) With my wonderful and supportive husband, I have two great children. My daughter, Livy, is 8. She's bright, creative, funny and fun. She's also patient, compassionate and bit older than her 8 years would imply. She's the amazing big sister to our son, Simon, who is the inspiration for this journal.

Simon is 4 and a half. He's a very affectionate, happy little guy who we are about to make a whole lot less happy. Tomorrow he (well, we) will embark upon a pretty ambitious therapy program at Kennedy Krieger Institute: the Constraint Induced Movement Therapy Program / CIMT.

Because of a stroke in-utero, Simon has Cerebral Palsy. He also has Hydrocephalus (with VP shunt placement), Epilepsy (that's new as of last month! More about that adventure later, perhaps), and some regular kid stuff like asthma and food allergies (mainly to nuts). As a baby, he had strabismus, and spent his entire first year of life with crossed eyes, but we were able to surgically correct that (though those early cross-eyed baby pics were adorable... maybe I'll post some..) From a cognitive standpoint, he's currently delayed about 2 years, particularly in the area of language development, and is in a special-education program at school. From a motor standpoint, he's hemiplegic, which means that he has full use of one-half of his body, but the other half has some paralysis. The degree of impairment ranges from person to person. Simon gets around very well overall, and so far nothing has been able to stop him from climbing on both playground equipment and furniture... the kid has no fear.

Simon wears an AFO (a sort of plastic brace) on his left foot and ankle to help keep his hip in alignment and prevent him from dragging his leg. It is his left arm, particularly his hand, that he has the least use of, and it is this appendage that the CIMT is meant to focus on by casting his "good side" to induce use of the weaker side. The hope is that this will cause Simon's brain to create new neuro-pathways to create a permanent change in his level of ability with the limb.. and, maybe, even result in other cognitive gains (fingers crossed!!!!).

So, Constraint Induced is the name of the therapy we're about to try, but I feel that in a lot of ways it describes life for us, as a family with a special needs child. In a few short years, we've encountered a lot of challenges. Things that constrain us from doing or living or thinking or planning in a "typically developing" way. But, the changes that these challenges (for lack of a better word.. sometimes they feel more like catastrophes!) have induced in us, as a family and as individuals, are the real miracle.

So, check back. Over the course of the next month my goal is to blog every day, with the input of my family, about our experience as a part of this therapy program. To see more clearly the changes it induces, in Simon and in us. To share our experience with anyone interested, and to share the unexpected miracles that can happen, that will happen, under constraint.