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.

Mommy Guilt

 

Midway through this afternoon I was already tired and grumpy. I was trying to cram about 2 days of work into a half-day because I needed to take Simon to KKI at 3; to be examined and casted for a new AFO (Ankle Foot Orthodic) brace since he has outgrown his current one. After this, we were to have an OT appointment. Needless to say, I did not finish my work and knew that I'd be playing catch up after the kids were in bed (no, I'm not caught up yet... working on it... sheesh.)

I finally stopped feeling sorry for myself about mid-way through Simon's casting. I think it is fair to say that this process is one of his least favorite, and I can't blame him. The kid never knows how long we're really going to leave that cast on (see earlier therapeutic activities for his justification). He is upset, freaked out, and overall majorly stressed-out by the whole affair. 

I couldn't help but feel badly for him. To regret (yet again) all that he has to endure. My head knows it is all for very good reason, and as he cries and asks for help, and struggles to be good and stay still despite his apprehension, I repeat this mantra to myself for sanity's sake. But my heart still aches for him. 

For such a little guy, he copes with so much. Today alone he managed a full day of school, including speech therapy and even physical therapy during recess. Then, I picked him up (he optimistically asked if we were going home, though he knows that it means an appointment when I pick him up from school) and took him downtown to Kennedy Kreiger. There, he was examined by PT and casted for a new brace. Directly following, he participated in a particularly tricky hour of OT. We came home, had dinner, and did a bit of his homework. Then time for a bath and bed. Tomorrow, back to school and therapy, and after school (you guessed it!) another session of private therapy. Speech, this time.

My tough guy is developmentally only three. It's hard for me to realize that and compare his "3-year-old experience" to what I provided his sister -- half days of utopian montessori preschool followed by plenty of mommy time, grandma time, and lots of fun outings and activities. Sure, education was important, but Livy's life was largely about being little, being loved, and having fun. It was a blast for both of us, and a sharp contrast to Simon's day-to-day.

Yet, Simon does have fun; he's a happy guy and a lot of effort is made to make learning and therapy playful for him. But his days are long, and he struggles to get through them. He often tells his aid and teacher that he misses mommy and wants to go home. And Simon is definitely loved, by just about everyone --- his family and friends, as well as his teachers and therapists. In turn, he loves everyone around him with a no-holds-barred-open-hearted affection. Everyone works hard to find the best way to help him, to work with him, to help him grow and develop. But, Simon works hardest of all -- today in OT I watched his entire body contort with effort as he struggled to pick up a jelly bean with his left hand. He is so tough, so resilient, so determined and persistent.

I know that Simon making great progress, and we all have so much hope for him to go further still. I know that we are doing what is best for him, but I also know that he is just my baby, and sometimes, I wish I could do just that -- simply let him be my baby. To be little, to have fun. To be free.

Girl Scout

Simon has a cold -- just a runny nose, a cough, and an occasional low-grade fever, nothing serious. Nonetheless, I am worried. The last time he was sick was in October (we've been reeeealllly lucky -- either that or those vitamin C-echinacea-zinc-gummi-vites acually work...). He'd had a virus, and when his fever reached a little over 102 he had a status seizure that lasted on and off for the better part of five hours. While we were in the hospital after that episode, the doctors told us that a status seizure is possible whenever Simon becomes ill (because a fever lowers the seizure threshold even while otherwise controlled with medication), and we should be prepared for it.


At the time, all I could think was "How the hell do you prepare for something like that!?," but, sure enough, I've learned to. Currently, Simon's bedroom is fitted with what I think of as the "mini ER,"  -- a suction machine, an oxygen tank, and a pulse oximeter he wears to sleep at night. We also have emergency medicine on hand, and a plan in place which dictates that, should he go into status again, we will take him directly to our preferred hospital (the one with all his doctors), rather than call an ambulance and lose time by being circumvented to our closest hospital first.


Those are the big things, the important things, covered as well as we can. I'd recommend those protocols for anyone in our situation, along with an anti-suffocation pillow and (coming soon!) a seizure response dog. I am still constantly on the lookout to find more ways to keep Simon safe and avert future crisis, as any parent would.


Strangely, though, I find that it is the little things -- the tiny comforts I have stashed, that bring me the greatest sense of inner calm. In my handbag I now routinely keep my headphones and charger, a notebook and pen, instant coffee packets, and extra toiletries for days' at the hospital uninterrupted by sleep or showering. At night, if I am really worried, I put Simon into bed with me and I sleep in my sweats. Within easy reach I keep one of Simon's favorite blankets and more appropriate "street clothes" for myself (because it is amazing how much more confident you can feel when you are wearing a proper bra and have shoes on that match). I've even been considering keeping a bag packed like I did during the final weeks of pregnancy.


At first, I was puzzled by how important these relatively unimportant things felt to me, but over time I have come to an understanding with my oddball self. True to my control-freak nature, I like them because they are the only things I actually have control over. I can't prevent a seizure, but I can make sure I have my phone charged to communicate with doctors, friends, and family. I can't avoid a PICU stay, but I can have the means to wash my face and make a cup of coffee to stay awake throughout it. I can't take this awful thing away from Simon, but I can wrap him in his favorite blanket and play him his favorite songs to comfort him. I can't change what is, but maybe, if I am a good scout, I can be prepared in mind and body to do the right thing at the right moment and we'll get through it together.


girl scout badges - 2/365, a photo by TrishSince1977 on Flickr.

Included

Simon's classmates made him this poster when he was in the hospital this October.

I just got back from spending the morning at Simon's school. We had a scheduled IEP meeting this morning to discuss assessment results (one of many meetings this year, since we are in an "evaluation year"). We met with most of Simon's team -- The IEP coordinator, the inclusion teacher, the special education teacher, the speech language therapist, the occupational therapist, the physical therapist, the guidance counselor, and the school nurse. Missing, but planning to be at our next meeting in 2 weeks were the physical education teacher, the music therapist, the adaptive technology specialist, and the school psychologist. 12 people (not including Brian and I). It was a crowded room, and I was pretty worried that I wouldn't have enough of the cookies I'd baked to go around.

Today's concerns about pastry portions are a far cry from my feelings a few years ago, at our very first IEP meeting to discuss assessments and make recommendations. Then, I only knew one person in the room and I was very intimidated -- fearful that I would say something wrong that would negatively impact Simon's plan, that I wouldn't understand what was going on and would be cut out of the decision making, or that I would sign off on something that proved to be a bad decision and I would be stuck with the consequences.

Most of all, I felt alone.

Being the parent of a special needs kid can be a very isolating experience. Despite their best efforts, most of the people you are close to can't relate to what you are going through, and many of the specialists you turn to for help have a myopic view of your situation and your child. You often feel that no one sees the whole picture; who you are, who your child is, and you struggle to find the words and ways to explain something that seems complex and overwhelming even from the inside. As your child grows, your worries about isolation grow, too. Your child's safety and quality of life come into question; "How will they be okay when you aren't there? Will they be able to make friends? Will other adults see how amazing a person they are? Will they be able to get the care they need when they can't speak for themselves?"

I still worry about Simon. But, over the past three years, when it comes to his education, some important things have changed. At today's meeting, I was surrounded by a team of specialists that all know me, and know Simon even better. They've seen him on his best days, and his worst. They know his strengths and they know where he needs help. They were open to each other's ideas and they were receptive to mine.

I've also gained confidence in my role as advocate and Simon expert. I'm always asking questions, troubleshooting, and putting forward ideas, and I have found that -- far from being excluded -- this is welcome. Even when I disagree with someone, the team encourages me to be involved and gives Brian and I a lot of credit for being a key part of Simon's success. We've been told that they wish that more parents would do the same.

Realizing how far I've personally come was a great gift today. However, the best part of today was listening to Simon's team talk about him. They said they found him amazing, that they were proud of him, that they were concerned about him, and that they had hopes for him. More than once they called him "our Simon." They told funny stories about him (like when he pulled the fire alarm), and shared sweet moments (like when he read them his first book and made his preschool teacher cry).

After the meeting I hung around to watch Simon on the playground and at yoga time. He was surrounded by other kindergarteners that don't just tolerate him, nor do they just accept him in the pack. The other kids were constantly looking out for him -- helping him wash his hands after using the bathroom, helping him play and seek out interaction, helping him follow the rules and pay attention. Though I believe that kids are intrinsically good, I know that these children have been taught, through constant modeling and instruction from the adults, how to interact with Simon and the other special needs kids in the school. Simon's inclusion teacher and aid are particularly good at this, and the result is a community in which everyone helps one another. Sometimes, like at yoga time today, older kids with special needs help younger ones. Everyone is needed, important, included.

And I came to realize that Simon isn't just MY child. He belongs to them, too. His classmates, his teachers, his therapists. He belongs to our friends and family that have contributed to the seizure dog fund. To the people that cheer for his accomplishments when I crow about them on facebook. To you, dear reader. Simon belongs to everyone that cares about him and helps to keep him safe.

I've never been so happy to share.

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.

Sorted

Sometimes my life is so exciting. I'll recount a little just to make you jealous.

This weekend, for example; I went to a yoga class. I shopped at two grocery stores and Targét (that's right, with an accent, I am THAT exciting). I hosted a play date and tried out a new frozen yogurt joint. Very swanky. I did all the laundry -- and folded it. I did some work and watched Harry Potter and the Deathly Hallows part one on on-demand. In bed.

But the true highlight of my weekend was sorting through the toys in the playroom. I was possessed with a passion for organization -- a deep need to clear the clutter, and so I conquered my own personal Everest.

It only took all friggin' day.

I don't usually let it get this bad. I'd like to say that I'd let things get out of hand just because I've been busy -- which is true, but not wholly. The whole truth is that I've been avoiding this particular clear out because of what it means.

It was time to let go of the "Pretty, Pretty Princess" game. The little bouncy ride-on caterpillar. A lot of the baby books. Many of the stuffed animals.

It means that my babies are growing up.

It also means that maybe I need to slow down a little. I work so hard to help the children grow, and worry so much about how they are doing that maybe I am missing the things I will miss.

I think, next weekend, I'll put the work and chores off a bit and spend a little more time playing with the toys in the playroom. Now, that would be exciting.

Father's Day

I can tell you the exact moment I fell in love with my husband. We'd been dating for a little while, we'd been friends for over a year, and I knew that I was starting to feel something more than simple attraction -- but, we'd really only known each other in one context. I knew, even then, that it isn't possible to clearly see the complete picture of a person within the twenty-something/work/happy hour/hang out environment. Besides, back then, the bars were still pretty smoky and nobody could really see anything.

That winter, we took a trip to visit his family who lived a few hours away. Having left after work, we arrived very late at night. His parents had stayed up to greet us (and meet me), but his sisters had gone to bed already. Like me, Brian is the eldest child in his family. He has a younger brother (who was in Germany at that time) and two younger sisters. I have a younger sister and brother. Like me, there is about a decade's difference between him and his youngest siblings; and we'd both spent a lot of time babysitting in our adolescent years, taking care of our little brothers and sisters while our parents worked.

After making introductions and briefly chatting with his folks, we went upstairs to go to bed ourselves. But, before we could even put down our bags Brian crept silently into his sister's bedrooms. Without turning on the light, without waking them up, he leaned over and kissed them each softly on the forehead. He watched them sleep for a brief second, and then exited the room with a look I'd never seen on his face before. His features had softened, and his shy smile completed the portrait of the man I'd been seeing, but was just now seeing for the first time.

I knew that, had his sisters been awake, they would have rebuffed this tenderness, as would my brother at the time. No teenager wants to be kissed on the forehead by a big sister or brother. But, I also knew that it was just the sort of thing I would have done. Brian was already a caretaker, just like me. He understood the selfless kind of love, the kind of love that carries you through anything and over any obstacles.

And suddenly, I knew. I knew that I'd found a man that I could marry. I knew that we would understand each other because we understood the meaning and value of family, of selfless love, of truly taking care of one another. I knew I was in love.

And, a few months later when he asked me to marry him, I knew that I was right.

I still am.

Post Preschool

I suddenly understand why little old ladies are compelled to own tiny little dogs, and to dote over them into their own dotage. A fluffy little dog will not grow up, will not cavalierly slide past the point at which you would like to freeze their "littleness" in time. No, instead, they will stay forever fluffy, soft and tiny. Just the right size to sit in your lap and cuddle.

I can see myself becoming one of these little old ladies one day.

Fortunately, for now, Simon is still small and sweet enough to cuddle in my lap quite frequently, but his "graduation" from preschool today highlights the fact that he is growing up. Although Simon seems like a three year old, he is not. Though I want to hold him back indefinitely, in the hopes that he will "catch up," I can't. This chapter of his childhood, and in my life as his mother, is closing, and in so many ways I don't feel that we are ready. Not ready to leave the safe harbor of pre-k-ness. Not ready to leave the teachers that have been so wonderful, and that I know love my child. Not ready to accept that, though we have made advances and done well within this special needs setting, we need to continue on within it and move forward into kindergarten.

Tonight I am both sad and grateful. Okay, mostly sad, but trying to remind myself that I should be grateful for the good experiences we had. A little (lot) tearfully I raise a glass to the teachers that have taught so well, and loved with warm and open hearts so many challenging children with challenges -- and their kind of needy parents.

 

Truancy

This morning, as I drove Olivia to Sunday school, she remarked that it had been a long time since we'd had our last "Mommy Day." I agreed with her. It has been over a month, longer than we usually go without spending dedicated special time together. She and I tried to plan when our next one would be; and, to our mutual disappointment, we discovered that it would be at least 4 weeks away.

"Oh," said Olivia in a quiet voice, "that's not good."

"No, it isn't" I agreed.

When we pulled up to the church, I found that, due to the adjacent college's open house, there was no parking to be found. I double parked with my flashers on and walked her to the door of the rectory.. which was locked. Everyone was waiting for the person with the key to show up (not an unusual circumstance).

As we waited, I noted the blue of the sky. It was so clear today, it seemed to hold endless possibilities. And yet, there I was locked out of the classroom but still locked into the usual routine, despite the downcast eyes and palpable sadness of my too big little girl.

Suddenly, I saw the signs and refused to lose another minute.

"C'mon, Livy -- let's go!"

And so we did. I grabbed her hand and together we ran back to the car, revved the engine, and streaked out into the world together.

Moments later, seated at Olivia's favorite place to have breakfast in the entire world, she was positively glowing over her hot cocoa and chocolate chip pancakes. I'm sure I was too, as I basked in the warmth of her big brown eyes, and talked with her about her favorite books, her new art class, the silly things her friends have said, and her desire to redecorate her bedroom ("I'm a big girl now, Mommy.")

I've always lived by "the rules." My "wild" youth was embarrassingly tame, and as I'm growing older and looking back, though I am proud of all I have accomplished; I sometimes regret the chances I didn't take.. simply because I wasn't "supposed to."

Olivia and I both knew what we were "supposed to" do today. But we also knew that there was something else that needed attention. I want to teach my daughter responsibility and commitment, so that one day she too can look back at her accomplishments with pride, knowing she has done "right." But I also want her to know that, despite all the supposed-to-have-dones, there is nothing more important than living in love and in the present, and to miss that would leave the deepest regret.

I don't want Olivia to only remember that her mother always did what she was supposed to do -- I want her to know that her mother loved her wildly. That responsibilities and commitments may justly run our lives, but it is love that rules them.

I promise I will take her to Sunday school as scheduled next week. But, I don't regret our truancy a bit. And, somehow, I think God understands, as only a fellow loving parent can.

Sheepless Nights

Before I had children, when my parents told me that they lost sleep worrying about myself and my siblings, I was certain they were being overly dramatic in the endlessly creative way parents devise to scare their kids into better behavior -- If you don't finish your dinner, throngs of starving children will suffer.. If you don't properly turn off the sink, the oceans will run dry. They had a point -- world hunger and water shortages are quite real –  but they aren't exactly hinged on your single plate of rejected veggies or your lackadaisically dripping tap.

However, I can say with certainty that on the matter of lost sleep, I was wrong (yes Mom and Dad - I admit it! You were right!). I've learned that being a parent means vast amounts of lost sleep -- well past the stamina-crushing newborn days (months). Fear of dreams and the dark, benign desires for drinks and cuddles, and occasional childhood illnesses, all take their toll on your REM count; but by and far worry is the biggest contributor to the overall deficit. The night before last was one such wakefully worried night for me.

I'd been hoping that tapping into resources for new therapies related to the Autism diagnosis would feel like an immediate positive step, but I found myself stressed about cost and stymied by waiting lists. I'd been hoping that observing the Special Ed Kindergarten (ECLS) Program at Simon's current school would ease my concerns about his education next year. Instead, I left feeling unsure and full of questions. I'm trying to have faith that everything will be resolved both well and positively for Simon's education and therapy plans in due course, but, nonetheless, I'm filled to the brim with anxiety over it (in addition to my usual worry about his more general well-being).

For hours, I tried to think about other things. I tried to breathe deeply, to make my mind blank, to chant spiritual mantras. I drank an entire pot of sleep-inducing tea, and read an equally soporific book. I tried to count sheep, but I found that they had been eaten one by one by the ravenous pack of wolves comprising my unbridled anxiety at 2... 3... 4 o'clock in the morning.

Last night started the same way. At 3 am, when Simon crept into my bedroom wide awake, I wasn't asleep either. I thought about putting him back to bed (a cardinal rule in our house is that everyone sleeps in their own beds) but the truth was, I wanted to cuddle with him. Lately, whenever I am overwhelmed by Simon's myriad "issues," I've found that the best tamper for my ratcheting anxiety level is simply spending time with Simon. Letting him be, and allowing myself to bask in his sweet Simon-ness makes everything feel like it will be alright, no matter what challenges we face. At that one moment, we are just fine.

I can't say I got any sleep -- a squirmy wide-awake preschooler isn't exactly a restful bedtime companion -- but I had peace. My sheep may have been eaten, but my little lamb is safe in my arms and all is well with the world.

Dreams

I've had a lot of babies happening around me lately (congrats all you new mom and mom-to-be buddies!), so it isn't too surprising that last night I had a very vivid dream about having another baby. In the dream, childbirth went exceptionally well and all was calm and happy -- sort of the opposite of when Simon was born. And I was thrilled -- until the dream nurse put the baby in my arms. I looked down and saw Simon (his newborn self).

"Wait!" I said, "I already had this baby -- and he is a little boy now."

"I know," said the nurse "but this baby is perfect -- no brain damage. You get to do it over!"

At that point, the dream turned into a nightmare. "No," I cried, "I want my son back -- my Simon. I love him just the way he is, and he is perfect. Don't take him away from me."

I think, for the first time ever, I was happy when Simon woke me up at 5 am to climb into bed with me. The dream faded and I held him close. As he snuggled into me, I knew that I really wouldn't change a thing. Though I both pray for and work towards miracles every single day -- to me, he is perfect, and I will always love him just as he is.

Secrets of a Super Mom

Today I felt invincible. I had a ton to do, and accomplished it all -- with style, finesse, and that certain "I don't know how she does it," possessed by super women everywhere.

It started in yoga this morning. I nailed a headstand (been working on it for months), and some tricky twists. I even got kudos on my flying crow arm balance from the instructor.

http://blogs.yogajournal.com/blognew/mt-tb.cgi/1221

Following yoga, I got myself and the kids ready for the day in record time, with minimal fuss. At the bus stop, my fellow super-mom even complemented my put-together appearance.

When the babysitter showed up sick, I made her tea and sent her home. Undaunted, I called in the reinforcements (To the iPhone -- "Hi Mom!"), so I could go out as my alter-ego to save the world, one well designed project for non-profit services at a time.

I came home, did laundry, answered some emails, and then headed out again to take Simon to therapy at KKI. I was able to give a glowing report to the therapist about Simon's "homework" progress, and watched as she used a robotic virtual-reality simulation machine type thingy (yes, I believe that is it's technical term) to get Simon to practice weight bearing exercises on his left arm. Total super hero stuff, and he was awesome.

We came home, helped Olivia study vocabulary, played outside on the swings, and made a fantastic Chicken Parmesan for dinner. After dinner, kids bathed and put to bed, work finished, and blog post written!

However, like any good super hero, I have my dark secrets. I'll share them with you here (and hope you will share yours with me).

Om Secret: Yoga. It is the one thing I do only for myself, and it makes me look and feel better. The endorphin rush lasts all day, and pushing myself physically with tangible results is satisfying in the midst of uncertainty and stress. The fact that the studio I go to has early morning classes with good instructors is a bonus, too. ('cause if I don't go in the morning, something will ALWAYS get in the way later in the day)

Morning secret: I get Olivia's clothes out the night before, and Brian gets Simon dressed most mornings. The kids pretty much eat the same thing for breakfast every day, so there is no need to think about it, and the coffee pot is programmable.

Looking put-together secret: My closet is essentially filled with the adult version of Garanimals (you remember, the coordinating sets of clothes for kids? Hippo tops go with hippo bottoms.. giraffe skirt with giraffe blouse?) Anyway, I have a wardrobe of neutral colors (a lot of black -- well, I am a designer), and some "pops" of color. When I need to get dressed, pull out a neutral outfit and choose pop of color depending on mood (today was magenta). My make-up is also totally neutral in tones (no need to match lipstick and eyeshadow!), and I grew my hair long specifically so I can pull it into a ponytail in case of emergencies. Add funky but also mostly neutral colored accessories. Complete with groovy colorful handbag. Done.

Childcare secret: It takes a village. I have a part-time nanny (carefully selected through sittercity.com -- another secret!), but I'm also fortunate enough to live close to family who actually like to watch the kids (yes, I know how lucky I am here)! My mom is especially helpful (as she was this morning), and always has the important things on hand (like juice boxes and Teletubbies) in case of emergencies.

Work secret: I love my work (both teaching and design), and I generally work with people that love what they do, too. Mutual appreciation makes inspiration easier and late nights more bearable.

My other work secret is my iPhone. Before it, I had never been a big cell phone user. Too much of a pain. However, now, being able to easily answer emails, take calls and check up on things while I'm out (like at a therapy appointment), keeps me in the loop all day and helps me address any issues immediately. Another super gadget for navigating to client meetings is my Garmin. I'd be lost without it.

Laundry/chores secret: Just do it in between everything else. Save sorting and folding laundry for when your favorite TV show is on. Make your daughter help put the laundry away (to earn marbles, of course). Listen to audiobooks when you clean -- you can catch up on book club and eradicate dust bunnies at the same time! Totally super.

Dinner secret: two words -- Trader Joes. That and/or cooking "big" on the weekend and saving dinners for throughout the week ahead.

So... maybe I'm not exactly super. Like all the smart women (and men) I know, I've developed tactics and built support systems that work for me; gradually refining how I navigate through the day, the week, the month. Maybe that is the not-so-secret secret: you figure out what works for you, and then you keep at it.

But, I do know one more pretty-super secret. It is as sure an antidote for cryptonite as can be found on this planet. An ancient bit of wisdom passed down through generations of super women....

 

Day 27: Like Frogs in Boiling Water

I read once that the average amount of close friendships that most people retain from high school is one, and from college is two. I have no idea if this is true, but if it is I can consider myself very lucky. I've also read that women who maintain a circle of good friends have significantly less stress, are generally healthier, and may even live longer.

Well, duh.

It is no surprise that women deal differently with stress than men do. Anyone who has ever been in a fight with a husband or boyfriend can tell you that. While men generally look for a way to fix things, women seek a net of emotional support. According to recent research, this has to do with ancient survival instincts -- for example, when the clan was being attacked by saber-tooth tigers, the men were driven to go out and kill it, while the women were driven to band together to protect their more vulnerable children and aged, as well as one another.

We may not be facing saber-tooth tigers these days, but I know that through lots of problems with big sharp teeth my friends have been there. By talking (and laughing) about what we have each been through, are going through, and what we have dreams and nightmares about, we're able to band together and find both comfort and protection from the wild unknown around us.

Last night I took a much needed break. I had the pleasure of enjoying an amazing dinner in a lovely restaurant with a group of even more amazing and lovely girlfriends who I've known since college. While enjoying the meal that none of us had to make or clean up, we were (of course) talking about parenting. Each of us checking in on each other's babies (even the really big ones), and sharing in the troubles and triumphs we've encountered since we were last together. One of my girlfriends recently had her first baby, and in talking about the experience of childbirth she compared it to being like "a frog in boiling water."

I have no idea if you've ever heard this particular colloquialism before, but I hadn't, and I just about snorted my Malbec when I did (graceful, I'm not). My friend went on to explain that some twisted biology experiment involves putting a frog in a pot of cool water, then gradually bringing it to the boil. Apparently, when the frog has the chance to adapt to the heat little by little, he never even notices that he's being cooked (until it is too late). By comparison, when you take a frog and chuck the little hopper into a pot of already boiling H2O, he registers the shock and jumps out in time to preserve his green little skin.

My friend was comparing this experiment to the gradual build of contractions.. saying that by the time you're ready to have the baby, you're okay with the intensity of the experience. I think I can go one further with this analogy and compare it to the entire arc of parenthood.

Little by little, through incremental events of crisis and conquer, we raise our babies to become adults. Real, hopefully well-adapted, fully-functioning PEOPLE. We find that situations which would have seemed impossible to bear, just a month or so before, become things we can cope with.

I know that for me, this is especially true. While sometimes it may seem that life with a child like Simon is a bit like a snowball turning into an avalanche barreling down a mountainside, it's really a bit more like being a frog.

The weeks ahead promise to be both challenging and enlightening. It will be our last week of the CIMT program at KKI. We'll be getting a more specific, formal diagnosis on the Sensory Processing Disorder, and recommendations on where to go from there. We have more evaluations to go through, for OT, PT, Speech and Neuro-Psychology. We have appointments with multiple doctors, and I need to schedule an MRI that I put off until after this program, to check in on the shunt, and the brain damage, and any sequella from the status epiliepticus seizure. I'll need to request a new IEP meeting with Simon's school, to share all my new knowledge and ask for their help in implementing recommendations into Simon's educational plan.

It may be getting hotter, but I'm adjusting. I wouldn't jump out even if I could. And to all my girlfriends (whether or not we've met) come on in, the water's fine.

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.