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.

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.

Keep Calm and Carry On

My very favorite mug bears the British WW2 poster slogan "Keep Calm and Carry On," which was meant to be a last bit of encouragement from the monarchy, a reminder that life goes on even in the face of a potential invasion by the Nazis.

There are many reasons that I like this mug so much. It has a cool design (nice typography!), and I am both a history buff and a slight anglophile. But, most relevant is the fact that, speaking from a personal history perspective, this pretty much sums up a key "Laura" trait. When I'm under a lot of stress, my main defense mechanism is to become rather stoic -- whatever it is that has me twisted into knots -- I feel that there is no need to think about it, analyze it, or discuss it (or, in the case of this blog, write about it) -- I just get through it. By keeping my eyes ahead and my mouth shut I'm convinced I will see the light at the end of the tunnel that much sooner.

It is a strategy that has often worked for me, though there are times when I've way over-surpassed my capacity, and I do succumb to a melt-down. But even this I prefer to do privately, usually in the shower where no one can hear.

I had my last melt-down about 15 minutes ago after reading that the child of a fellow special-needs blogging parent died in his sleep due to a seizure. My heart broke for them, and for me. It is in the wake of this honest, cleansing cry that I finally feel like I am ready to write about what has been going on here - something my husband has been encouraging me to do for a few weeks now.

First, let me get some things straight -- life hasn't been all bad, in fact much of it has been great. Brian started the graduate program he was hoping to get into, and he loves it. I've been very busy with all good projects (which is a huge feat for a self-employed gal like myself), and my semester has started off well. Olivia is enjoying both 3rd grade and her first team sport -- field hockey! And, best of all (for this mommy), Simon has been doing really well in kindergarten. Both his teacher and his aid are incredibly wonderful and supportive, and they are truly invested in making his experience both pleasant and successful. With all the anxiety I felt over the kindergarten transition, it is more than I could have hoped for (expect a post later more about school and what I think is making our inclusion setting work).

So, what am I freaking out about? Well, aside from having enough going on to make our little family truly crazy busy (my calendar is a mess, I have to color-code it), and aside from the stress of two very over-worked parents, there has also been enough "really scary bad" thrown in to tip my coping scales into a stoic silence.

 You see, I've been terrified of losing Simon.

A few months ago, after seven months of being well-controlled, Simon started having break-through seizures and frequent bouts of sudden vomiting. After LOTS of blood work came back inconclusive, we tried increases in medication. So far, they haven't help the seizures (though the vomiting stopped).

Within this, I noticed an alarming pattern; Simon's partial seizures were happening while he was sleeping and they always included him vomiting. Though we have a video monitor on him at night, the partial seizures only involve facial movements and are virtually silent. Even the vomiting is silent, it just pours from him without any of the normal retching you'd expect. I feared that he would have one of these seizures at a time when we were all too deeply asleep to catch the slight noises on the monitor, and that we would wake to find that we had lost Simon due to asphyxiation.

As soon as I realized this, I contacted every doctor and medical professional I knew to help me find a way to protect him. I thought that there MUST be something to detect a night-time seizure and/or distress.

At the same time, I began researching like crazy on my own and I came up with some rather striking disoveries. I learned that there are syndromes within epilepsy, and that one of these syndromes seems to fit the variety of seizures Simon has -- including the vomiting, which, as it turned out, could likely be a form of autonomic seizure activity occurring in the occipital lobe.

I also discovered that I am not the only parent worried about losing their child due to a seizure at night. I found many stories, personal ones told on list-serves I belong to, a foundation in the name of a child that died -- the Danny Did Foundation in Chicago -- and some major news articles including this article from the NY times and this article from Newsweek talking about "Sudden Death in Epilepsy" also known as SUDEP. Mainly the articles focused on how little is being done to understand epilepsy, how SUDEP is virtually undiscussed by the medical community (in fact, there is a stigma against discussing it with parents and patients, thinking the anxiety the knowledge can cause will lessen the quality of the patients' life), and how, especially in the United States, there are no real options available for the detection of nocturnal seizures and, thereby, prevention of death either due to a prolonged status seizure (with can cause renal or heart failure, as well as brain damage), or due to suffocation or asphyxiation occurring while seizing.

I emailed our Neurologist with my findings. She agreed with my diagnosis on the vomiting and the relation to occipital seizure activity (I'll be sending her a bill for my time and expertise later). She also (somewhat sheepishly) acknowledged that yes, SUDEP is an issue, and no, she had not discussed it with us because there was nothing we could do about it and she didn't like to upset parents. She compared it to SIDS, in that the deaths are a bit of a mystery and there is a limit to what prevention can do, if anything.

I admit that I was sorely tempted to throw a complete raging fit. WHAT DO YOU MEAN MY SON COULD DIE AND YOU DIDN'T TELL ME AND THERE ISN'T ANYTHING THAT CAN BE DONE ABOUT IT? Instead, I kept calm and reasoned with her. In the case of SIDS, I said, parents are made aware and there ARE both preventative recommendations and things like apnea monitors for parents to make use of. Shouldn't a similar protocol be in effect in this situation?

She didn't disagree with me, but she did say that no such protocol existed. There are no recommendations. There are no monitors. All she could offer was to tell me that other parents in this situation find it similarly stressful, but that we have to learn to live with it.

All of the other doctors and medical professionals that I knew agreed with her. There was no one to help me. I deeply sensed the reality of an impending unthinkable disaster.

Well, F#@& THAT. This momma is going to carry on. (Okay, so I did give myself over to one or two fits of hysterical crying in the shower. It was necessary.)

The only way I know to carry on is to do more research. A lot more. I came across an article on Epilepsy.com "Nighttime Siezure Activity: Will your family every sleep peacefully again? " (the answer is "no," by the way), that talked about what we are dealing with. While the motion monitor in the article won't help us with Simons' still-bodied partial siezures (yes, I called the manufacturer to check), it got me thinking about re-purposing other kinds of alarms. To help narrow my search, I spoke with a nurse at Kennedy Krieger about what physically happens to a person during a seizure, and (light bulb moment!) the heart rate goes up abnormally and, if in distress, the blood oxygen level would go down abnormally. What I needed was a pulse oximeter with an alarm. Eureka!

So, I called the neurologist and pediatrician and asked them to direct me to one. Once again, no help. They said that there was nothing that was FDA approved for the use I intended to put it towards. They suggested I try ebay. Or amazon. They offered to write me a script if I found anything to help with insurance costs.

Again, carry on.

I searched and, to be honest, last week I just ordered my THIRD device (anybody want a slightly used pulse oximeter?). In this quest I was on my own, and therefore a bit reliant on trial and error. The first two devices were more made for adults and Simon's tiny finger was too small to get a reading. We visited the Neuro in person last week, and this time, when I dumped my useless gadgets on her exam table and looked her directly in the eye, telling her I refused to lose my son this way, she had a harder time brushing me off. She wants to try an apnea monitor used for sleep studies, and we are currently trying to go through insurance to get it.

In the meantime, I had been watching Simon's video monitor like a hawk. Sleeping at all had been hard, and it was wearing on me. My anxiety was ratcheting to what I knew were unhealthy levels, but I could not shake the feeling that something bad was going to happen.

 And then it did.

Wednesday, Simon had a slight fever, which we know lowers the seizure threshold. After I gave him his medicine and put him to bed, I placed the monitor on my desk while I went back to work. About 20 minutes after he fell asleep, he had a seizure. I heard the little chewing noise, saw his open eyes on the monitor, and I ran upstairs. By the time I had yelled for Brian and vaulted the steps, he had already vomited. He was lying on his back and choking.

Thank god I am a neurotic, persistent, pain in the ass. After his first seizure I had demanded a script for a suction machine (reluctantly given by the pediatrician since it is not seizure protocol), because I was afraid of just this scenario. We keep it set up in his room and we were therefore immediately able to suction his airway clear (though we later found out he had aspirated enough to lead to aspiration pneumonia). We timed the seizure and because it went past 5 minutes, we administered the emergency Diastat and called the paramedics.

To make what is already a ludicrously long story shorter (sorry, brevity is not one of my strengths), I will summarize what happened over the next few days. Simon's seizure became another status episode and he seized for over two hours. Once again he needed to be in intensive care to monitor him after the massive dose of drugs administered to stop the seizure to prevent it from killing him. And, once again, I am profoundly grateful that he has come out of it okay and is now resting and recovering at home.

Despite the disturbing sense of déja vu, I am also grateful that this time I am better educated. Last time, everyone panicked. The emergency room doctor, in her desperation to stop the seizure, gave him so much phenobarbital that it nearly killed him. I remember standing beside the gurney with tears pouring down my face, helplessly thinking I had lost my son. This time, I was calm and in complete control. I was able to prevent the prolonged medical coma he was in last time by directing the emergency medical team on specifically what medications they should and should not give him, and I made sure to get our neuro team immediately involved and had him transferred to their care.

While at our world-class "home" hospital, I used the opportunity to grill EVERY SINGLE medical professional I came into contact with about what I can do to prevent a recurrence in the future and have come up empty handed. Some doctors apologized and told me that they knew the situation sucked. One coldly told me that there needs to be "more of a market to warrant developing such a device." Everyone told me that I was doing the best I could and that I should, over time, learn to live with it.

I am living with it. I know that this is going to happen again. And again. I will keep calm, BUT, I refuse to believe that there is nothing I can do. I will not let this go without one hell of a fight.

The third pulse oximeter I ordered just came yesterday. The only devices specifically for kids are clip-ons and we are trying to find a way to make sure it does not come off of his hand at night. At least this one gets an accurate reading. That is something.

Carry on.

Worry Doll

For the past few weeks -- ever since Simon's last seizure -- Simon has been vomiting on a pretty regular basis. Totally out of the blue. One moment he is just standing there, the next he's got a pool of.. well, you know what.. at his feet. Even the babysitter (bless her!) has learned how to catch it bare-handed.

At first, we thought that this come-uppence was due to the increase in medication (it is a documented side effect). But, after 3 weeks, we weren't so sure and neither were Simon's doctors. Last week we visited the neurologist and she threw out a lot of (scary) ideas. Metabolic disorders and shunt malfunctions were at the top of the list.

So, we got tests done and the doctors conferred and we waited. I worried. Actually, I had a total meltdown. For an entire evening I was completely non-functional. I hadn't told anyone about my worries, or about what was going on, and I think I imploded a little.

I suspect that all people are, on some level, superstitious. Not necessarily walking around with talismans and incantations -- but maybe just holding back, guarding thoughts and speech against jinxes. Whispering our fears to imaginary "worry dolls" and setting them aside, leaving them underneath our pillows to turn over quietly in our hearts, in the dark.

If we don't talk about something, it won't be.

Unfortunately, the denial/talisman tactic didn't made me feel any better. I certainly wasn't sleeping better at night, and it didn't prevent my meltdown last week.

What helped was venting, and having a good cry. Learning more, through online research and emailing doctors with lots of questions. I can't say I have eliminated the worry, but I have deflated the balloon of anxiety a bit. Which is a good thing, because, although Simon has not vomited all week (the babysitter is especially relieved), his blood tests came back with abnormal results, and so we need to get more tests done. I know that no matter what I am feeling -- if Simon needs something -- whether it is more tests, or (yikes, I am going to say it out loud) surgery, to correct or repair his shunt, I have to be together. I have to be his talisman against the scary, and the painful, and the unknown. Worry dolls don't cry.