Welcome Home Tigger!

It finally came – the day we have been working towards, preparing for, and eagerly awaiting – May 27th; the day we got to meet Tigger and bring him home with us! Though I admit to having a slight case of nerves (My first dog! And not just any dog, a very special service dog I am going to help train! Eep!), our anticipation was well rewarded with an amazing homecoming. Below, see how our first day with Tigger unfolded -- in pictures!

Tigger's trainer, Kim from Noelle's Dogs Four Hope, requested that we meet her at a mall near her home in PA. She wanted to meet in a public place so she could not only introduce us to Tigger, but could begin to train us on the public access training commands we will be working on while we have Tigger for the next 6 months (after which time he returns to Kim for 3 final months of specialty seizure response training). Though Simon was a little hesitant at first, with some encouragement he pat Tigger's head. Tigger is very gentle and sat quite still as he met his boy for the first time.

Over the next 2 hours we walked around the mall practicing commands and getting to know our new family member. Though I could tell Tigger wasn't quite sure who to listen to (I held the leash and the treats but he still looked to Kim for commands), I was impressed by how well-behaved this seven-month-old puppy was in a relatively populated public setting. The only time he balked was at the elevator (he doesn't like elevators -- something we have to work on with him), and when it was time for him to part from his trainer. I know it was hard for Kim to leave him, too -- how could you not fall in love with this face?

Pretty soon we were on our own -- a newly minted service dog family. 

Everyone took a nap on the way home. It had been a very busy afternoon for kids and puppies (and parents!).

When we came home we discovered our house had been decorated! Our amazing neighbors, the Beckers, had created a very warm welcome. I teared up (as usual) reading the note on the door: "Dear Tiggger, We want to welcome you to our neighborhood! You could not of asked for a better family then the Hatcher's! You will love Simon and adore Olivia, we do! Love, The Beckers"

Tigger was eager to explore his new surroundings and (much to our surprise) Simon wanted to help. I think Simon understands how it feels to want to explore a new place, and so he took Tigger's leash for his very first walk around the house. Simon let Tigger lead, which was very polite of him.

Dinner time! We've been told to try to get Simon to do as much of the care-taking as possible, so Tigger will understand that Simon is "his" boy. In fact, one of the main things we will be working on over the next several months is creating a bond between Simon and Tigger.

Tigger was very interested in Simon's bath. Simon told Tigger he was too big to join him in the tub and should come back later.

Time for bed. We had been nervous about this -- we didn't know whether Simon would be okay with the dog in his room, or if Tigger would be alright being left with Simon. But, one of the main reasons we got Tigger was to help us respond to Simon's nocturnal seizures, and for him to do that he needs to be with Simon when he sleeps. "Start out as you mean to go on" are words I have lived by since the days of babyhood and Tigger's trainer agreed. Put them in the room together and shut the door was what she suggested and (after talking to Simon about it and having him say it was okay, another surprise), that was what we did.

As soon as we left the "boys" alone together, Brian and I turned on the video monitor to watch what happened. We were pretty anxious, especially since Tigger started to whine almost as soon as we shut the door, and Simon pulled his covers over his head. However, after just a little while, a day that had already been special became spectacular.

As Tigger cried, Simon told him to "shh!", but gradually he started to talk to Tigger. And he talked to Tigger for over an hour -- IN ARTICULATE, ORIGINAL SENTENCES THAT DEMONSTRATED EMPATHY.

Here is a sample from a video we took (as soon as we recovered from our shock enough to realize we should be recording this momentous occasion!)

"I'm sorry Tigger. It's okay. You're trapped. Be quiet. Time to go to sleep. Let's take a nap." Then, when Tigger hopped onto Simon's rather small toddler bed: "Tigger, you're too big. You sleep on your bed (pointing) over there. Time to go to sleep." Tigger didn't budge. Simon sat, thinking for a moment, and then he finally decided to give Tigger his nightlight and lay down with him. (I can't overstate how shocked we were!). Finally, Simon sang a song to Tigger that he sings to himself when he is scared at the doctor's. Within a few more minutes, they were both asleep. 

Now, I had heard about service dogs being used to encourage language and empathy in kids with autism. I'd heard that kids who were otherwise inarticulate and friendless were able to gain both language skills and a bond of love when paired with the right animal. I honestly never really believed it. Though I hoped that Simon would find a friendship of sorts with Tigger, I have been so completely focused on Tigger's potential to protect Simon during one of his dangerous status seizures that I really considered anything additional a pleasant but unlikely and less necessary bonus.

I LOVE BEING WRONG.

Today, we took Tigger and Simon out for the first time on our own to buy a bed big enough for the two of them.

Love is

It is Valentine's Day, and (like everybody else), I have love on the brain. The thing is, in more recent years, with handmade paper Valentine's becoming more important to me and days of wine and roses fewer and farther between (though, if you are reading this, Brian, I still like wine and roses, and chocolate, and jewelry...), I think about love more in the context of my entire family, less as a solitary couple. 

When I think about love, I am also reminded of this biblical verse (1 Corinthians 13:4) read as a part of our wedding ceremony, almost thirteen years ago:

Love is patient and kind. Love is not jealous or boastful or proud or rude. It does not demand its own way. It is not irritable, and it keeps no record of being wronged. It does not rejoice about injustice but rejoices whenever the truth wins out. Love never gives up, never loses faith, is always hopeful, and endures through every circumstance. 

At the time, we read it simply because it is what you read at Christian weddings. I honestly don't think I have ever been to one and not heard this verse. It is pretty, it talks about love, it bears a hopeful sentiment for a lifetime of uninterrupted marital bliss.

However, like most couples, I learned early on that there is no such thing as uninterrupted marital bliss. There are plenty of interruptions. There are irritable moments, rude moments, and many times when you keep record of who did what (and maybe even boasted about it).

After a few years (probably after hearing it again at someone else's wedding), I started to think that maybe that verse had it wrong. I mean, really, what did an ancient guy named Paul know about marriage? I don't remember him talking about his wife (or even a girlfriend) anywhere in the text. He never once mentioned that time he promised not to leave his toga on the floor without being snarky about it. Maybe, I thought, like the priest that had given us "pre cana" marriage counseling, he meant well but had never experienced the reality.

Real love, I found, is messy stuff. And, when we had our first child, it got messier (literally). There was much record taking (I did the last 2 diapers, thankyouverymuch), and maybe even a little rejoicing in injustice (thank goodness I wasn't home when that diaper exploded). When we had the second child, it got even messier. When we heard the terms stroke, and brain damage, and hemiplegia, and unknown outcomes... we lost faith. It seemed that we had encountered more than we could endure.

Bad news, surgery, sleepless nights, fear, anger, and anxiety came and demanded its own way. We lost track of the record. We held onto each other until we cried, we cried until we fought, we fought until we talked, and we talked until we finally learned how to really support one another.

 

From Simon's infancy, each developmental milestone slowly missed, then eventually met; through our encouragement and his unflappable determination, taught us that love really needs to be patient. It learns to be. The prayers, help, cheers, and support, of therapists, doctors, teachers, family, friends, and even people we don't know, has taught us over the years that love really can be kind. It finds a way to be.

Perhaps a just little to our surprise, Simon's sister showed us that love doesn't have to be jealous. From the beginning, Livy embraced him without complaining about the extra time he gets, or attention he receives. Instead, she chose to help take care of him with us. She protects him against injustices (like when she thinks her parents are being too tough on him), she teaches him things (like how to play her DS games, and get his own goldfish crackers), and she parties on with his triumphs. 

Of faithfulness, Simon himself is absolute proof. He never gives up, it has never occured to him to lose hope. At the center of his being, it is his complete faith in us, in the love of our family, that will always endure through every circumstance. Simply by being himself, Simon has taught me what love is.

Maybe, after all, that old guy Paul had it right.  

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 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.

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.