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.

Tigers, Dragons, and Dogs

Have you read, or heard of, the "Tiger Mother" by Amy Chua? I'd be surprised if you hadn't (it was quite the meme), but, in case you have not, it is the autobiographical account of one mother's decision to raise her children the "Chinese way" (her words).

According to the Chinese zodiac, those born under the sign of the tiger are brave and fiercely competitive. As a "Tiger Mother" Chua accepts nothing but excellence from her children in everything from grades to handmade birthday cards. She is uncompromising, and to a degree successful. Her children have straight A's and one even made it to Carnegie Hall. As justification for her methods, Chua says that she chose to do things the way she did because she believed that her children had the potential for greatness, and that to expect anything less was to insult them.

When I read the book last summer, I honestly had mixed feelings about the Tiger mom approach. On the one hand, some things she recounted were so far from the norm you had to question her soundness of mind. But, on the other, I've always been very hard on myself, and being the mom of a "gifted" child that I sometimes see myself in, I can understand the temptation to carry that impulse over. To push my daughter to where I know she can go, and not accept anything less.

Except, I have to pause at that word... accepting. Learning to accept the way things are has been a key part of my experience as the parent of my other, "special needs" child. I may not like, or want, the challenges that he has been dealt; cognitively or medically, but I have learned that in order to cope with them or move beyond them, I have to accept them. They are a part of our family. To deny that through stubbornness or anger would be just as ludicrous as turning away the truth that Amy Chua missed out on through her willful blindness to the more basic kinds of love her children were offering. To be heartfelt is to be perfect.

Last week, when a friend posted the article "Notes from a Dragon Mom" by Emily Rapp, I immediately got the fiercer-than-a-Tiger reference. It also stood out to me because my Chinese zodiac sign is that of a dragon (something I've always been secretly pleased about -- dragons are cool! Way better than Brian's sign of a rat...).

I knew that dragons were said to be passionate, creative, and unafraid of challenges, the flattering characteristics I liked to associate with myself. However, it wasn't with so much pride as with a touch of sorrow that I understood the perspective of the writer. Rapp knows that she is going to lose her 18-month old son to a terminal illness, and she has learned how to keep going and be a parent despite that heartbreaking knowledge. To quote the article:

"This requires a new ferocity, a new way of thinking, a new animal. We are dragon parents: fierce and loyal and loving as hell. Our experiences have taught us how to parent for the here and now, for the sake of parenting, for the humanity implicit in the act itself, though this runs counter to traditional wisdom and advice."

Though (I thank God every day), Simon is not terminally ill, living with the understanding that he is at risk of being suddenly taken from me (more than what we all fear from the daily unknown of accidents or freak illnesses), has already changed me in ways I hadn't really stopped to understand. Like Ms. Rapp, I have come to realize that the "new normal" Simon's doctors have repeatedly told me I will get used to is something else entirely.
I now know that I have to accept it, to become a fierce new animal. A fire-breathing dragon mom, burning away the expectations for love's sake alone.

And, in its way, this could be a freeing revelation, if it weren't for that tiger mother in me. She is pretty fierce as well, and I cannot completely change my stripes. Just as I know I have to accept an awful truth, I also know I have to get over it.

I have to learn to tight-rope walk between these constellations. Between accepting what is and reaching for what can be. I know that both of my children have the potential to be great, but I also know that they are great the way they are, without qualifiers or contraindications. Without expectations. I have to take both challenges and triumphs, one steady foot in front of the other.

Which is great. Except, sometimes, you fall. And, when I fell this last time, I didn't think that there would be a net. I'm as stubborn as a tiger. Like a dragon, I don't know how to ask for help. 

So, you can imagine my surprise when a dog broke my fall.

Researching options to prevent the unthinkable, I discovered the Chelsea Hutchison Foundation -- another organization created to raise awareness for SUDEP, in the name of a child that died too young. Chelsea was 16, and the doctors never told her parents that a seizure could take her life. Her fierce Dragon parents are now trying to help others with epilepsy, through raising funds to help pay for seizure response dogs. 

I immediately contacted the foundation to find out more, and graciously, Chelsea's mom emailed me right back. She was glad I had gotten in touch with her, and she was happy to help. She told me about the benefits of service dogs and I felt the first real surge of hope I'd had in many weeks.

It was on this high that I reached out in a simple facebook post, just asking if anyone knew anything about service dogs. I had no experience with them, and googling had only gotten me more confused. I was hoping to hear from someone that perhaps had second-hand experience, or had heard of something locally. I was hoping for a place to start more research, but what I got was so much more.

It seemed that, after finally breaking my cyber-silence with last week's post and this simple request, everyone around me was just waiting for a call to action. Dozens of friends commented -- some to just offer encouragement, and some with truly great contacts. A college friend (thank you Wilson!) connected me with his partner's mom, the founder of St. Francis Service Dogs and a truly warm and knowledgeable person. She spoke with me for over an hour about my son and what a service dog could do for our family. Though she couldn't help me (they don't serve our area), she told me what to look for. Ultimately, it was an organization suggested by the Chelsea Hutchison Foundation that came through for us.

Though I know that I may not have completely changed our situation -- we don't yet have a dog, and even when we do, I know that a quick response alone won't change the potential of a seizure ending Simon's life (though we hope it decreases our risk some, particularly for asphyxiation). I know this, but I also finally feel like I'm on the road to doing something positive, something proactive. And, I realize that I'm not alone. I had turned to our doctors and specialists for help and come up empty handed. Over and over again. I turned to my friends and family for help, and not only did I come up with many truly helpful hands, I've come up with more support and love than I could imagine.

According to the Chinese zodiac, dogs are loyal, compassionate and kind. I've also discovered that they might well be able to calm the roaring of a heartbroken dragon, and the growling of an angry tiger.

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.

A "special" trip to Nordstrom

Or... "Swanky Special Needs Kids Stuff."

Usually, I am all about saving cash, especially when it comes to kid stuff. They just grow too darn fast. (okay, and I'm kinda cheap... nothing makes me happier than scoring a deal in the clearance section of the discount store!). But, sometimes, you get what you pay for.

At least that was the result when, couple of weeks ago, I succumbed to the potty watch. We've been working on toilet training Simon for about a year or so now, with gradual improvement (and a LOT of patience). However, I've recently had to accept the fact that we've hit a wall when it comes to getting Simon to recognize for himself when he has to pee. He can tell us when he needs to poo, but we think that for #1, the sensation may just not be registering since he does have a decreased sense of feeling in some of his muscles. To compensate for this, we've decided to try to time-train him, for now.

Time-training simply entails putting the kid on the potty at intervals regular enough for them to stay dry. For Simon this seems to be every hour. Prior to now, I've used the pull-ups potty app to create time alerts, but with Simon going back to school soon I really wanted to introduce something that was both a bit more portable AND that started to put him more in control of "potty time."

 

http://www.amazon.com/Potty-Time-Watch-Blue/dp/B001AH8JNC/ref=sr_1_1?ie=UTF8&qid=1313703726&sr=8-1

The "Potty Watch" does this very well. You can set the timer for a variety of intervals and when the alarm goes off it plays a cute little song and lights up, getting his attention effectively. The price isn't bad, either, $9.99!! Total bargain. And it worked! For a week... almost 2. Just as Simon was getting the hang of it, it broke. And, frankly, I wasn't thrilled with it. It looks like a little toilet and it says "potty watch" right on the face of it. I so totally didn't want to send Simon to school wearing that; even if HE doesn't know the difference, I don't want to give other kids any reason to laugh at him.

This watch, and the only other like it (which was a bit less conspicuous), both got poor reviews for quality on Amazon. Knowing now that I am in this "time training" thing for the long haul, I wanted something that wasn't going to fall apart. My husband (something of a watch junkie) suggested a Baby G, since they have a lot of features -- one being an hourly alarm. Not the cheapest, but not the most expensive. And it WORKS, and won't fall apart (and I'm pretty sure if it does Nordstroms will replace it)! Best of all -- It looks cool and not at all like a toilet! Score.

http://www.casio.com/products/Watches/Baby-G/BG169R-8/


My other fab find of the day was a pair of Vans. I tend to go very cheap on Simon's shoes because I need to buy two of every pair. One at his normal size, and one two sizes larger for the foot with the AFO (brace) on it. I usually shop at Targét for a couple pairs of Converse one-stars. These are cute, but honestly, the different shoe size thing is awkward. To look at, to buy, and -- most importantly -- for Simon to walk in.

Being that we are approaching the start of a new school year, I browsed in the shoe department at Nordstroms to see if they had anything cool for a little boy starting Kindergarten. I also like to look there because, sometimes, the nice folks at Nordstrom are willing to sell a mixed pair to a cute little kid and his crazy mommy. I was immediately drawn to a cute pair of bright blue Vans -- they were funky and they had everything I look for in a shoe for Simon -- mainly velcro and a wide rounded toe. However, I got a real surprise when Simon tried them on. For the first time, EVER, I didn't need two different sizes! The shoe is wide and stretchy enough to fit the brace without having to go up a size.

http://shop.nordstrom.com/s/vans-mid-skool-77-high-top-sneaker-baby-walker-toddler-little-kid-big-kid/3159330?origin=PredictiveSearch&resultback=402

So, after this little shopping spree, I'm feeling pretty good about sending a very stylish child to Kindergarten. I might be an emotional wreck, but damnit -- he looks good.

PS. On a side, note, if you have been following, I don't have any news on Simon's test results yet. He went back for another round and we are still waiting. The good news, however, is that he hasn't been vomiting and we can definitely rule out the shunt malfunction for now. I'll let you know when I hear something -- I've been calling the Neurologist every day!

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.