Thursday, May 31, 2012

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!

Monday, May 28, 2012

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.


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.

Sunday, May 20, 2012

Boldfaced Grace

As we sang "Amazing Grace" at the end of mass this morning, Olivia returned to our pew from the children's program without Simon and very upset. Immediately worried something had happened to Simon, I asked her what was wrong (was Simon okay, was she okay, what happened?), but she assured me that everything was alright -- Simon was with a grown up helper in the hallway and she would tell me what was going on as soon as we got outside. Together, we filed behind throngs of other worshipers exiting into the hallway and went to retrieve Simon.

We have only just started to go to this new church and, more to the point, we have just started to attend mass with Simon on a regular basis. It has taken me over a year to accept that the tiny but beautiful urban parish I've loved since my art school days could not (or would not) meet the needs of my family by providing an atmosphere in which Simon could participate. At that church there is very little in place for kids, and nothing for children with special needs. As I have come to accept that Simon isn't going to "grow out of" his inability to sit through a long adult-focused mass anytime soon (and as I started to accept that it was time for me to let go this last bastion of a former self), I looked for a better fitting parish for our family.

Upon the recommendation of a neighbor and after a little research, we settled on a large suburban church with extensive programming for children (toddlers through teens) as well as a "buddies" program (run by a teacher from Simon's school!) to help kids with special needs be included in the typical program. The parish itself is huge -- there are a ton of families with kids, many of them from Simon and Livy's schools. It is very modern and high-tech; with big screens, a rock band, and cafe that serves starbucks-worthy fare. I honestly found it overwhelming at first; a little like I had walked into an extremely friendly foreign country -- I was on constant sensory overload, but at least the crowds were smiling.

I'm gradually becoming accustomed to this new culture, and I'm learning to appreciate that it is not just a better fit for the kids, but in general the messages discussed are relevant to where I am in my own life. Today's message was to think about something we want but do not yet have, to envision our world with it in place and then to be "bold enough" to ask for God's help in getting it. Though I envisioned lots of bold things (a future where Simon and Olivia are both happily independent, good health for my family, career successes...), I kept returning to what seemed like a simple wish for grace.

It is something I yearn for often, in good times and bad. I pray for it when I am facing one of Simon's potentially catastrophic seizures and I need to have the grace to overcome my fears and focus on the present. I pray for it when an entire community has enveloped us in their love and generosity, and I need to have the grace to find the ways to show them how profoundly grateful I am without letting pride or humility overtake me. I pray for it when I am confronting a socially awkward situation, like this weekend when I went to pick Olivia up from a party and the other parents of "gifted" kids like Olivia were sedately having drinks while I was chasing Simon around the house (to keep him from destroying the antiques) as he spun wildly with hands flapping, drooling copiously and loudly reciting his current favorite television programs. In these moments I pray for the grace to be okay with Simon being Simon. To have the grace to be honest if asked about him, but not feel the need to launch into explaining or (worst of all) apologizing for him.

This morning after mass it turned out to be a good thing that I had been praying for grace. When I found Simon with the adult from the children's ministry I quickly uncovered why Olivia had been so upset. Simon's "buddy" had not been present at the children's program today, and so Olivia had taken it upon herself to try to take care of him. Despite her best efforts Simon quickly got beyond her ability to control; singing loudly, spinning, jumping and climbing until he finally accidentally kicked another child. Olivia didn't know what to do, and became embarrassed when people started staring at her brother and complaining about his behavior. An adult interceded fairly quickly and helped her, but not before she was inconsolable. Olivia told me that she was sorry that she wasn't able to take care of Simon, and that she was embarrassed by what had happened, but she also felt bad to be ashamed of Simon. As she told me about her feelings one of her school friends stopped over with her mom to see if Livy was okay and she immediately hid herself under my arm in a way she hasn't done since she was a tiny child.

Though what I really wanted to do was burst into tears, I forced myself to focus on practicing grace both for me and for Olivia. I smiled at everyone present and told them how much I appreciated their concern and reassured them that we were fine. I put an arm around each child and steered them past the crowd, through the parking lot, into the car, and I drove to the nearest Dunkin' Donuts.

Coffee and pastry in hand, Simon happily engaged with his pile of glazed munchkins, I told Olivia that I knew exactly how she felt. I know it is hard to take care of Simon when he behaves in a way so different from other children. I know it is hard to know what to do when others are bothered by it. I know it feels wrong to be embarrassed by someone you love.

And then, I told her that I had been thinking about this thing called grace. That I thought that grace was living your life everyday doing the best you could to be the best person you can be no matter what challenges you were faced with.

Olivia (who never misses a beat) asked me if Simon's disabilities were the sort of challenge that I meant; and I agreed that they were -- but not just for Simon, for our entire family. Sometimes this challenge is something that makes us different from others, and that people might stare or not know how to interact with Simon, or even be afraid of him or unpleasant to him. Olivia told me that this was exactly what she was afraid of, and I told her that it worries me, too.

But, I said, this is where grace is so important to our family, and how maybe our family can make an important difference in the world. I told Olivia that if we can be graceful by being our honest best selves, we can show everyone that Simon is in some ways different, but it isn't a bad different. It is a happy, loving, fun (and sometimes a little crazy) different. That by being a loving family we can show the world that people like Simon might sometimes need extra help -- but just like everyone else they also need respect and acceptance.

As Olivia's tears dried and I finished my coffee and cleaned up a very sticky Simon I thought about how simple what I am asking God for is. I just want us to be graceful by being ourselves. By being ourselves, I want to be an example of what love, respect and acceptance mean for people with disabilities. By being an example, I want to enlighten those around us and make them reconsider their own attitudes and prejudices. By making people more enlightened, I want to change the world for my son and everyone with challenges like his.

I simply want to change the world... which I guess is a pretty bold thing to ask for after all.

Saturday, May 12, 2012

Club Friends

When we decided to try putting Simon into an inclusion kindergarten last fall (meaning that he spends part of his day in a typical kindergarten classroom instead of spending all of his day in a special education setting), I had many concerns. One of my biggest worries stemmed from something one of Simon's doctors had said to us when I asked him his opinion on special education vs. inclusion -- he said that often, for kids with special needs, it was "kinder" to keep them in a group with kids more like themselves because, "kids can be mean to people who are different."

I didn't know if I agreed with him or not. Part of me hated the implication that I should sequester my child, and another part of me wondered if he was right. He does have a lot of experience, and I know he has the best interest of his patient's at heart. Directly contradicting him, however, Simon's school felt strongly that we should give inclusion a try. They, too, have much experience and the best interests of their students at heart. After about a month of weighing pros and cons and after assurances from school that if things did not work we could change them, I decided to try inclusion, albeit with the by-now-familiar sense of uncertainty I harbor when making decisions about Simon's future path.

Fortunately, just a month into the school year I knew we had done the right thing. Simon had his second status seizure and -- despite the fact that he had only been in school with his class for a few weeks -- each child made him a card and created an amazing poster by tracing their hands and sending "a hug for Simon" right to his hospital room with their teacher and Simon's aid who visited us that night. We still keep the poster in Simon's room and I get a little teary every time I look at it, knowing how much love and well wishes were sent his way by kids that (at the time) barely knew him. They just knew he was one of them.

Over the course of the year, the child I was worried would never make friends had his first playdate, was invited to birthday parties, and even had his own well-attended "playzone party." When he was absent or ill, I was told that the kids missed him. When I visited the class, the children told me how much they loved him. Through teacher reports and classroom visits I came to see that Simon wasn't just  included with the "typical" kids -- he was loved. And, because they loved him, a child that had no interest in other kids now gets excited to see his friends. Though he still doesn't communicate in a "typical" way, the children accept him for who he is. They love his big (sometimes sloppy) hugs and always compliment his shirt (right now Simon's sole conversation with peers is "I like your shirt! Look at my shirt!").

I honestly did not think that things could get any better. Until they did.

Last month a teacher from Simon's school that coordinates the student-run "Club Friends" contacted me. She explained that "Club Friends" had been started by some of the students at the school who wanted to find ways to do nice things for people in their community. They had created care packages for soldiers, made cards for children in hospital, and provided blankets to those in need. They had heard about Simon and his seizure dog in training and the Club wanted to help with a penny drive.

At the time, I told them we had paid our portion of Tigger off (with MUCH help from so many friends!), but that we were waiting on a grant from the Chelsea Hutchison Foundation. I suggested that, if they still wanted to help, it might be a good idea to take whatever was raised and donate it to the Chelsea Hutchison Foundation. Not only would they be helping Simon by putting money towards his grant, but they would be freeing funds to help more children waiting for life-saving pups in training. They agreed and so I came to visit the Club to talk about epilepsy and service dogs. Then, quite ably, they kicked off the campaign, calling it "Cents for Simon."

I was very impressed by the fact that these very young people were so actively seeking ways to make the world a better place, one act of kindness at a time. I was also very touched by the kids desire to help a kindergartener that most of them didn't know. However I am sorry to say that I also underestimated the impact they would have. Not only did the cents (and dollars) pour in (they had to switch from collecting the change with buckets to tubs!) but emails like this came to me through Simon's teacher:

"The day the announcement was made the school was collecting pennies for Simon, M came home so excited and immediately emptied his piggy bank.  He proceeded to ask his sisters and parents for their change for Simon because it was so important for Simon to get his seizure dog.  He called his cousins in Chicago to ask them to send their pennies and when he received the money in the mail he was so excited to take it to Simon.  He also called his grandparents and uncles and asked them for their pennies, who all handed him a baggie of pennies.

Tonight at family dinner he said he had something very important to say. He proceeded to tell everyone about his friend Simon who has a seizures and needs a dog to help him but it was very very expensive and we need to help him.  The other people who were there for dinner also gave a small donation to M for Simon.  I can not tell you how excited he is to be helping his friend."

I went through a box of tissues the day I got that email, and it didn't stop there (and I've lost count of the tissues). Some children had lemonade stands asking for donations, some parents made incredibly generous donations on behalf of their kids, and the outpouring of love and support from the faculty and administration of Simon's school was absolutely staggering.

Thursday was the last Club Friends meeting of the year. They asked me to come with Simon so they could show me what they had been able to raise. As Simon happily spun in a circle in the middle of the room singing a song, the Club's little classroom filled with kids, teachers, staff, and parents. Standing in front of the group, they told me that Club Friends had set a goal of raising $2,000 -- and they had achieved it. They handed me a card with a check and, as astounding as the amount itself is, it was what the card said that so overwhelmed me.  

"Keep your spirits up. In life we are certain to be confronted by circumstances and challenges beyond our control, but keep your spirits up... you always have the support of others who truly care!" -- signed the Faculty, Families and Friends of the entire school.

As I openly wept (thank goodness I remembered to wear waterproof mascara for once) and a fourth grader found me a another box of tissues, I turned to the child nearest me to thank her. I told her that it was hard for me to put into words how much it meant to our family; that she and her friends should care so much about Simon.

The little girl (who looked about 7) took a deep breath, tilted her head to the side, and squinted at me for a long moment -- as if she were trying to decide how to explain something to someone who really doesn't get it. "Well," she said, "Simon's just a little kindergartner, and he just needed some help..... so we helped him."