TiggerFest!!!

Some of the kids showing appreciation for the guest of honor.

The party to recognize all those that helped bring Simon and Tigger together was a HUGE success (and I mean that literally -- there were well over 100 people in attendance!). Thank you to everyone that came out to celebrate with us -- It was a beautiful day and a beautiful reason to throw a party.

Me with the awesome band, Confidence in Volume!

Before our awesome band played, I took a moment to personally thank everyone -- here is (more or less) what I said:

This party is not about a dog -- albeit it an absolutely adorable super hero dog. It still isn't about the dog.

This party is about a little boy who, in his first six years, has encountered challenges that most of us would not be able to survive and still be standing; from a stroke before he was born, to three life-threatening status seizures over the last 18 months, to more diagnosis than I care to think about. And Simon has not just survived -- he has thrived. This has been a year of incredible progress for Simon.This year he had a favorite color, deepened his love of all things pirate, and taught everyone some new songs. He also wrote his name and read his first book. This year, in kindergarten, Simon made his first friends. He had his first play date and he had his first ever birthday party (that he helped plan! Pirate themed...). Most recently, Simon got his first dog and with it his first responsibilities in helping to care for Tigger.

Simon has had an incredible year, and we are profoundly grateful. We are grateful for his indomitable spirit and amazing resilience, and we are grateful to the many people that worked with him, cared for him, befriended him, and let him into their hearts to love him.

Which brings me to what this party is really, REALLY about -- the reason it was so important to our family to get everyone together that has so positively impacted us this year -- this party is about YOU. Our family, our friends, our community.

One of my many faults is not knowing when, or being able, to ask for help. The people that love me know this and, as soon as we started to talk about a seizure dog and said the word "deposit" my parents and the rest of our family were there (as they have always been), this time literally with cash in hand and not taking "no" for an answer. I am grateful that they did.

Mom and Dad chasing the kids!

Our friends, also knowing how hard-headed I am, went right ahead and called Noelle's Dogs for Hope to find out what they could do to help us get Tigger. They shared our story with their own friends, and their families, and without me ever knowing about it, they collected funds to cover Tigger's travel from Colorado as well as a significant portion of the cost. And then we went out for dinner one night and they waited for me to finish a glass (or two) of wine before they told me what they had done. Four months later, I am still speechless.

I am unspeakably lucky in my friends!

Simon's school, Lutherville Lab, not only took amazing care of Simon this year, but have completely embraced our entire family and been right beside us in looking for solutions to make sure that we do everything we can to keep Simon safe. I honestly don't know of another school that would say to a parent (without knowing what sort of legal challenges bringing a service dog into their school would present) -- "Whatever we have to do, we will do it. We are here with you." 

Some of the great ladies from Lutherville Lab

Most of all -- the kids. We spend a lot of time talking and worrying about bullies; especially we parents of special needs kids who worry about our children being particularly vulnerable. But the kids that are here today have proven that they are capable of more kindness, acceptance, generosity, and true friendship than we could ever have imagined. 

At his own birthday party, Jaidon asked not for gifts for himself but for his friends to give him gift cards to Petsmart and Petco so that he could give them to Simon to help buy what Tigger would need when he came home with us (Tigger says thank you for the toys!).
 

Simon with some of the great stuff for Tigger we were able to get with Jaidon's gift cards!

Ridgely Middle found out about Simon and Tigger through Kayla, whose mom is Simon's kindergarten teacher. They used their annual Arts in Action night to raise awareness about epilepsy and seizure dogs, and raised funds for Tigger through the auction of some pretty amazing pop art sculptures. 

"Club Friends" created by a group of students at Lutherville Lab to be a club for kids both with and without special needs to celebrate friendship and share their kindred spirit with the community through good works; waged a "Cents for Simon" campaign that raised impressive funds, awareness, and an amazing affection for Simon throughout their school and beyond (we have heard fifth graders describe Simon as the most popular kid in the school -- I have a feeling that Tigger is going to totally lock that in for next year, too!).

Simon at school with his teacher, friends, and Tigger!

Finally, Simon's kindergarten friends this year, and his teacher and aide Mrs. McGee and Mrs. Natterman. These were the most enthusiastic supporters of the "Cents for Simon" campaign; canvassing their friends and relatives for support, creating lemonade stands and wearing their "Help Simon get a Seizure dog" pins with pride. This year -- seeing how Simon is not only accepted by these awesome kids, but cared for, helped, and genuinely loved by his classmates, has been the most profound gift this mom could have ever received.

People typically throw parties like this to celebrate milestones in their life -- to recognize an important place they have reached and to celebrate with the people that have helped them get there. This year, we have gone from feeling frightened for our son's well-being, to being embraced and uplifted by our family, friends, community, even people we don't know -- together, we have experienced a true miracle, and I can't thank you enough for being a part of it. I will carry this in my heart always and I know that years from now, when Simon is encountering more challenges as we all inevitably do, I will have the story of what happened here to remind him of how loved he is, how great people can be, and how miracles really can happen.

Our awesome school-bus-driver-ice-cream-man made a special appearance with his truck for the occasion. He was just as popular as Tigger!

Beanie Baby Service Pups in Training for everyone to take home!

Simon had so much fun he required a two-hour post party nap.

This about sums it up. :-)

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."  

Love is

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

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

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

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

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

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

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

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

 

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

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

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

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

Tiggers are Wonderful Things

Tigger

"I wouldn't trade it for anything. Never, no, never.
Your friendship is the best present ever." -- Tigger

Meet Tigger, a puppy in training to become a seizure response service dog for Simon through Noelle's Dogs Four Hope. According to his trainer, Tigger is smart, VERY fluffy (he is a golden doodle), and he loves to cuddle.

Right now, Tigger is working on "Lesson One" of obedience training. We should get him in April, at which point we will continue his service dog training and work on getting him to bond with Simon and alert to his seizures. In November Tigger will return to Noelle's Dogs Four Hope for 3 final months of seizure response training. Finally, we will complete a week of training together and take a test to make him a certified service dog for Simon.

We have a lot of hopes for this 12-week-old puppy. We hope that he will be able to alert and respond to Simon's seizures. We hope he will help us to keep Simon safe. We hope that he will make Simon happy; by being an unconditional friend, by providing a social connection for him with other kids, and by aiding his independence in the future. We hope that he will make our "new normal" less stressful for our family by being a bright spot in this murky world of cerebral palsy, autism and epilepsy.

I realize that is a lot for one fluffy dog to manage. But, I have good reason to be optimistic. Though it is several months before we get to bring Tigger home, he has already brought together the love and support of our family and our friends, and has taught me a valuable lesson. You see, although the cost of a service animal is substantial, I found I couldn't bring myself to ask for help (despite the really cool magnets and buttons the Chelsea Hutchinson Foundation sent us with Simon's adorable face on it). Every time I considered it, I kept thinking that despite the expense, we are so much better off than so many. I kept reminding myself that we are the "lucky" ones -- we have jobs, and benefits, and I know that I will manage no matter what. Maybe I was too humble, maybe I was too proud. Maybe I have always seen myself as someone who gives and was uncomfortable being in the place of one who needs.

Despite my poor grace, my parents immediately came forward. They were as excited as we were to find help for Simon, and as soon as they heard the word "deposit" they were there to assist and I knew not to argue. I know that Simon is theirs, too. Over the holidays, some of Simon's aunts and uncles, his entire kindergarten class, and some of our very good friends and a long-time friend of my parents made contributions to the "Tigger Fund," in unlooked-for but generous and very welcome gifts. Such a display of support for our family was the best Christmas present I could have ever received, and again, I gradually came to understand that Simon is theirs as well. That our family is bigger than I realized.

And, it is still growing. More folks from Simon's school have asked how they can help and even people at my mom's chiropractor have sent me checks. Last week, when I had dinner with a group of dear college friends and their spouses I was totally surprised -- they had called our trainer directly and gotten together to pay for Tigger's travel expenses. They also reached out to their friends and family and are even planning to redesign Noelles' Dogs website, so that in the future it will be easier for people to donate directly to help families.

Yesterday, when I spoke to Tina, the owner of Noelle's Dogs, she told me she has been amazed by the outpouring of support for Simon. She also told me that everyone she talked to was excited to help. That they love Simon, and that they love our family. I love them back, of course, I always have. Though I can't say I am amazed (I always knew I was surrounded by amazing people) I am completely overwhelmed by the generosity we have been shown.

Tigger has already given us a tremendous gift. He has provided a way for the people who love us to do something positive and concrete to help us protect our Simon, our family. He has shown me that accepting help isn't a weakness. Though he's just a twelve week old fluffly puppy working to master "lesson one," Tigger has already brought out the best in so many people, especially me.

This is one amazing dog.

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.

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.