My Third (Furry) Baby

I'm going to be honest -- before I brought Tigger home, I really did think he was going to behave less like a living being and more like a robot. Give command -- follow command. Perfect obedience, some affectionate behavior at designated intervals, but no real personality or independence to speak of. What can I say? I'm going to attribute my embarrassing ignorance to having little experience with dogs in general, and a complete lack of experience in training or working with a service dog. As stated in an earlier post -- I can be proven wrong (and it is usually a good thing that I am).

Tigger, as it turns out, has a lot of personality! He is extremely affectionate and friendly -- he loves people, other dogs, and even my two mean old cats (he looks so sad when they hiss at him!). Like a little kid, he loves attention and really can't stand to be alone for even a few moments. New friends to greet, belly rubs, easy cheese, and stuffed animals with squeakers, all make Tigger a very happy puppy. 

In many ways, all this personality is a pleasant surprise. We've really fallen in love with him and his sweet nature. And I think he truly loves everybody back. Not to mention that, for a 7 month old puppy, he is REMARKABLY well-behaved: you only need to tell him once to "leave it," he never begs, is generally quite calm, and he is usually very willing to follow many commands -- all the result of the last 5 months of intensive puppy and obedience training which I am VERY grateful to our trainers for!

Simon also continues to react to Tigger in a truly remarkable way -- he treats him like a little brother. He bosses him around (Tigger! You go that way! You sleep on your bed! Time to eat!), gives him advice (Tigger! You need to be patient! You need to be a small dog, you're too big!), and he likes to help take care of him as much as he is able. Simon likes to hold his leash, get his food, and give him his toys to play with.

Simon really enjoyed showing Tigger all the new toys we had gotten him (so he has something to do OTHER than chew the cords of medical equipment!)

 However, just like the baby he is, Tigger fusses when he can't go where he wants when he wants to, and he hates being sent to bed. He gets into things because he is curious, or bored (like chewing up the cord of Simon's pulse oximeter after bedtime a couple nights ago! ack!). He gets excited and tests his boundaries in new situations. He also has opinions about who he wants to listen to and be with -- he LOVES Brian and if Brian is home he follows him constantly (despite our ongoing efforts to get him to attach to Simon).

For my part, I've come to realize that, while Tigger is here to serve our family, he is also a member of it. He's another kid to add to our clan, albeit a very furry one. Though he learns fast and is well behaved he still needs some of the things that any kid needs, especially in a new environment.

So -- I've re-arranged Simon's room to give them both their own space. Siblings need that, I think. Simon now has a bigger bunk bed (playtime on top, sleep on the bottom) to accommodate sleepovers with Tigger, but Tigger also has his very own corner of Simon's room with a full toy box of options for him to entertain himself with something other than the cords of medical equipment in the wee hours of the night.

Simon on Simon's bed.

Simon on Tigger's bed.

I'm also providing Tigger with some clearer boundaries. While he behaves like a dream for Brian, he tends to ignore my commands half the time, and he pulls at his leash a lot when I walk him. Apparently, Tigger does not see this momma as an alpha (ha! If only he knew who really made the decisions around here!). I consulted with our trainer, Kim, about this and on her suggestion I got him a "gentle leader" harness that goes on his face for walking and I have acquired a rather loud clicker to get his attention. I also got some good advice from the trainer at Petsmart -- he told me to give a command once, wait for Tigger to follow it and then help him follow through if he doesn't listen to me (rather then "beg" him to do it repeatedly which is what I had been doing). So far, all of this seems to be helping Tigger pay better attention to me. We'll get there.

Tigger with me wearing his new "gentle leader" harness at the grocery store. He did great!

Our other big challenge is getting Tigger to "attach" to Simon as his boy. He likes Simon, but doesn't follow him or pay him any more attention than he does anyone else. Of course, it doesn't help that the one thing Simon does not like (which we are working on) is being very physically affectionate with Tigger. He will pet him when asked to, but only briefly. If we ask him to hug Tigger, he says "no thanks." I think Simon might not yet be that comfortable with Tigger -- especially his size. However, the fact that he is as relaxed with him as he has been thus far is a really good sign. I imagine that, given a few more weeks and a lot more encouragement, Simon will come to love on Tigger like the big teddy bear that he is. I also think that this evolving bond of affection will be the thing that finally gets Tigger to see Simon as "his boy" and help him divert his focus from Brian to Simon.

Overall -- the past few days have been very exciting, and a little overwhelming. I'm simultaneously falling in love with our new addition, and tentatively feeling out this new ground as a pet-parent and service dog trainer trainee. I have so much to learn, but there is one thing I can say for certain -- the more I learn, and the more I see Simon interact with Tigger, the more confident I am that we have made the best choice for Simon and our entire family.  We will get there!

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.

La-Z-Ed-U-Ther-Ap-Y

I admit it. I've been a bad mother lately, and I'm having more mommy guilt than usual over the fact that Simon and I haven't managed to finish a homework packet in 2 weeks. I've been told that I'm allowed to "adapt" them, to omit what Simon can't yet do and simplify where needed, but I'm pretty sure we should be handing in something.

Yet, between Simon's stepped-up therapy and my stepped-up work schedule, it has been just a little too much for us both. Simon is pretty tired after school, and a couple evenings a week he has extra therapy sessions outside the home. On nights he is off, we work on left-handed skills by wearing his new cast. After just a little while he's frustrated and "done" with working altogether. I know I should cheerfully push through this, but I've been lacking my usual stamina (since I'm kinda "done," too), and I can't decide if it makes me a worse parent to push, or to pull back.

Either way I am sure I'm doing something wrong.

To compensate, I'm trying to combine things. Tonight was an excellent example. First, we did our casting session. Since Simon is working on identifying money in school we set out some coins and, after identifying the coin he used lefty to put it into the piggy bank (pincer grasps, supination and math!).

For our second session we worked on language and social skills. I brought out a pint of Ben and Jerry's and we practiced asking nicely to take turns with the spoon....hey, wait, that counts as OT too! Lazy mother... or genius!

Okay, fine. Tomorrow we will finish our homework. For tonight, I need more froyo because Simon ate most of it. Please pass the spoon.

Echo Bridge

Despite a thorough scrubbing, my stairs are still covered with sticky glitter. Earlier this weekend, a small boy tried to roll a snow globe down them. I don't think that it worked out quite the way he thought it would... and so, Simon learned the hard way that glass doesn't bounce.

The crash was pretty spectacular, and I think he knew right away he'd done something wrong. I immediately swooped in to save him from any shards, and after I'd checked him over (he was fine), I sat him down on a chair while I went to clean up the mess.

A few moments later (and a lot sparklier), I retrieved Simon from where I'd planted him. He'd stayed put in the chair and was crying pretty hard. I hugged him in my lap and told him he was okay. We took a few deep breaths together, and as soon as he'd recovered himself he began to tearfully recite a bit from one of his favorite Winnie the Pooh stories; falling back into his "normal" echolalic behavior.

As I held him, I realized that he was reciting from the episode about Rabbit's vegetable garden -- Tigger had bounced all over it and ruined Rabbit's rutabagas. Simon was repeating Tigger's apology to Rabbit, over and over again.

"I'm really sorry, Rabbit.... It's okay Tigger, it was an accident.... Thank you, Rabbit..."

Then, gradually, it turned into... "Simon is sorry.... It's okay Simon, it was an accident..... Thank you, Rabbit."

I realized that Simon was trying to apologize to me. He was connecting Tigger's mistake to his own, and Rabbit's reaction to mine. He was using the "social story" the episode provided to find the right words to tell me how he felt. Suddenly, the echolalia wasn't just repetition, it was an actual echo of his own meaning, his real intention.

I've imagined before that Simon's communication disability is like a vast body of water, making him into an island I can't quite reach. Although I'm still looking for a ship to navigate across it, in the meantime, perhaps I've found a bridge.

So the mermaid says to the frog...

"Do you hop?" And the frog, being agreeable, demonstrates. "hop, hop, hop!"
Good job!" says the mermaid. "Let's do it again!" And the frog, ever accommodating, complies.

For about the last six months, Simon has been using his toys to reenact scenes from favorite TV shows. This was pretty exciting in and of itself -- he was talking, a LOT (I'll take language in any form!), thoroughly entertaining himself, and lately he's added dramatic vocal inflection. The most exciting part, however, was that it  seemed like he was practicing -- getting ready to try playful interaction; to create a 2-sided dialogue of his own.

Over the weekend, I noticed that Simon was playing with toys in a slightly different way. He was talking ABOUT them. Not reciting, not repeating. He was also more specific about what he wanted to play with. When I gave him his pirate captain, he told me he wanted the pirate's friends, too.

Wow, I thought -- that's different. Simon is becoming aware of friendship -- and he likes it! How incredibly amazing, wonderful, miraculous...!!!  I found a few more crew members and Simon sang some pirate songs and I looked on feeling more optimistic than ever. I've been avidly eavesdropping on his playtime utterances ever since, looking for more glimmers of spontaneous social awareness.

My rapt attention was rewarded tonight -- frogs and mermaids have never been more eloquent. There were just a few lines, but they were all Simon's own.

Stick a Fork In It

One of the most perplexing things (okay, one of many "most" perplexing things), about raising a not-very-verbal kid with physical challenges is being able to tell the difference between when he CAN'T do something and when he WON'T do something.

Take, as a prime example, our relationship with cutlery. As a parent, I know it is my duty to instill at least a baseline of table manners into my children, so that one day they may be welcome to the table of people with potential import in their lives. Not to mention the fact that it would be nice to have a meal with the kids that doesn't require a bath afterward.

However, after many failed attempts at introducing forks and spoons, Brian and I had sort of given up on it. Besides, there are few things that can't be converted into acceptable finger foods, and Simon is so small that he generally doesn't raise any eyebrows when we dine out and he eats with his hand.

Sadly, we are aware that the clock on this grace period is ticking, and so, this past Saturday, Brian put on a brave face and decided that it was time to re-introduce the FORK. I have to admit, I wasn't completely on board. It was Saturday morning and I had yet to finish my coffee, "Is this really necessary?" I whined. I reminded Brian that, once you start this sort of crusade, you really can't abandon it. It becomes a matter of sheer will, a battle that as a parent, you MUST win (no matter how many years later), because to lose this would mean a lifetime of meals resembling that scene from "The Miracle Worker"...

We know that from a fine motor standpoint use of any tools like this is challenging for Simon. He has trouble manipulating crayons, using scissors, threading beads, connecting legos, etc. We've worked on these skills in OT, and continue to do so, but we haven't really pushed the utensils. It just seemed like making his ability to feed himself more difficult was kinda mean. The kid already has a lot to cope with, why add to it?

But, I had to agree with Brian, the time had come. We owed it to Simon to try to civilize him.

Steadfastly, Brian poured me some more coffee and presented Simon with his favorite breakfast in the whole wide world.. the BIG breakfast from McDonalds, which, believe it or not, my 34lb son can totally pack away, shoveling it in one-handed with gusto.

Exicted, Simon ran to the table, only to fall off his chair in a total and complete tantrum when we presented THE FORK and insisted he use it. We'd pre-loaded it with his favorite part (sausage), but even that wasn't enough and he actually tried to remove the sausage from the fork rather than raise the offending implement to his mouth.

About a dozen tantrums later, we reached a compromise of sorts. I'd placed three forks on his placemat -- each one loaded with a different food. Eggs, pancakes, sausage. "Simon," I chirped in my "Mommy is happy and calm no matter how much you freak out" voice, "look, you can CHOOSE which fork you want. What do you want to eat? Simon can CHOOSE HIMSELF."

Simon was tired, and hungry. This tiny semblance of control was just the olive branch he was looking for to be able to pick up the fork with dignity. He chose sausage. I reloaded. He chose eggs. I reloaded. Pancakes... you get the picture. We did this for a while, and as he settled into the rhythm of it he did something that shocked us.

He took his empty fork and speared his own sausage, thank you very much.

We're still working on it, and it is pretty frustrating for Simon. (FYI, cheese curls are exceptionally motivating and easy to spear). But it is one more step towards ability, and I find that exceptionally motivating for me.

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 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!