Here We Go Again...

This past Monday we had an appointment with a neurologist I waited 4 months to see. She is a doctor I saw speak at an Epilepsy conference last October, and who really seemed to get all the "side effects" of Epilepsy (behaviorally) that our current neurologist doesn't seem to know much about. Plus, she is head of her department, as opposed to the medical resident we've been assigned at our current practice, who is a wonderful person, just, you know, a medical resident. I wanted a second opinion with this woman. To know we are doing, and have done, everything we can in regards to B's seizures. I wanted to sit down and talk with someone experienced. I remember being at the conference, and a family spoke about how they had gone to several different neurologists when their son was first diagnosed. Over and over they were told they already had the best, and to stop looking. I wanted to see "the best", too.

In the end, though, I'm not sure it was worth the wait. She was different than I expected. Not as animated and social as she was at the conference. She told me B will probably outgrow his seizures, and acted as though we were wasting her time. Don't get me wrong, she was good with B, but I could tell that she didn't consider us one of the serious cases she is probably used to handling (which is probably why she spent the majority of the appointment talking to B about Minecraft and his other interests, instead of asking me about his seizures.) She said she'd follow us "if we wanted", with a shrug of the shoulders. To me, B's Epilepsy is serious, but I suppose because there is a chance he could one day be seizure free, we just weren't interesting enough.

She also brushed off my behavior concerns, and of course had to give her opinion on his Aspergers diagnosis. That even though we had a 6 hour neuropsych exam done through the autism center that is part of her hospital, she just thinks he's highly intelligent and "a boy". Even though she admitted that the neuropsych was very thorough, and even though I told her it was the school BCBA who really thought he had Aspergers and told us to get an evaluation, she wasn't convinced. She told me she'd have the psychologist who works with her take a look at his testing, see if she agreed or disagreed with the diagnosis.

It pissed me off.

We weren't there to discuss anything other than B's seizures. I certainly wasn't there for a 2nd opinion on his Aspergers diagnosis, especially when she isn't a neurologist who specializes in anything other than Epilepsy. I'm tired of every doctor and nurse we come across thinking I *want* their opinion on any diagnosis my kids carry. There's nothing I want less. 

At first, I tried convincing myself the appointment had gone really well, but once I was able to process everything, I realized just how much she brushed me off, and it really bothered me. Not because she wouldn't do anything differently, but because she seemed uninterested. Instead of taking time to discuss my concerns about the seizures, she spent most of the time challenging his diagnosis on the spectrum, or talking about topics unrelated to why we were there.

I really hoped I'd be seeing that passionate, caring, knowledgeable person I saw speak. I should have known better. Doctors who are department heads don't want cases like B's. Regardless of how scary his brand of Epilepsy is to me, cases like his don't peak the interest of a seasoned neurologist. B isn't a waste of time, though. He's a kid who had 6 tonic/clonic seizures over the course of 3 weeks, and whom I worry about every day. I want a doctor who gets that. And you know what? Our inexperienced medical resident does. She is always there to email, or call, and never makes me feel like I'm wasting her time, or that B's Epilepsy is no big deal.

She also doesn't question his Aspergers diagnosis, because, you know, she's met him, and knows it's not just "intelligence and boy". She also knows we see her for seizures, not autism.

I guess I've learned a valuable lesson: bedside manner, personality, those things can sometimes be way more important than how much experience a doctor has. It's important to see someone who isn't jaded, or just looking for the most severe case. Who thinks B is just as important as I do. Even if he one day does outgrow his seizures, it doesn't mean I don't worry now, especially since his type of seizures are the ones most associated with SUDEP. Excuse me if I don't brush his Epilepsy off, and skip along home.

So, we're sticking with our current neurologist. She's not "just" a medical resident, she's someone who cares about my kid, and knows he's worth her time.

Sad Face

July 31st and Aug 19th are two dates that are burned into my memory forever. They are the the dates of B's first seizure, and of his last. Well, his last so far, as much as I hate to qualify it like that. The last one before he was admitted and given giant doses of Depakote, after experiencing 3 Grand Mal seizures over the course of 5 hours. 

July 31st is also the last morning he woke up in his own room. Excessive Googling, and finding out there is something called SUDEP, which is basically SIDS for people with Epilepsy, brought him into our bed, and won't allow him to leave. 

I won't allow him to leave. 

Last night, as my husband, B, and I were vying for room in our bed (alongside our 65 lb dog), B started crying and told us he just wanted to sleep in his own room. He said it a few times, frustrated and teary-eyed, and only one word escaped my mouth. 

No. 

When my kids sleep in our bed, I wake up at the slightest movement. It's a good thing when you want to know if your kid starts seizing beside you, and a bad thing if you ever want to feel well rested. I just can't bring myself to let B sleep in his own room again, alone, because what if...

What if? 

There are (expensive) seizure monitors on the market, and I honestly thought we'd have one by now. Mostly because my husband isn't a fan of sharing bed space with a child who rarely stops moving all night. But, it's a lot of money, and easier to just keep B in our bed. Even with a monitor, I don't trust anything as much as I trust myself. I wouldn't feel comfortable without B beside me at night. I like having him close, within my reach.  

But, he's 7, and the novelty of sleeping in our bed has worn off for him. It's been a long time since he's spent a night in his own room, and he's always been a kid who preferred his own bed over sharing one with us. Even as an infant, when I wanted to co-sleep, he preferred his crib. We actually moved his crib into our room so he would still be with us, even though he didn't share our bed (yes, we were those crazy AP parents.) 

But moving his bed into our room now just isn't an option, and, yes, would be over the top. I just don't know how to let go, or ever feel comfortable letting him sleep alone. Even if we did have a $600 seizure monitor hooked up to his bed, it's not the same as having him with me. I know he can't sleep with us forever, but, well, I want him to sleep with us forever. 

I am not sure what to do. I hate that B is so upset over having to stay in our room. I know how much he loves his own bedroom, and I know he doesn't understand why I'm scared to let him sleep alone (nor do I want to share my reasons, because he doesn't need to worry about such things.) 

I know B hasn't had a visible seizure since August 19th, but that means nothing to a worried mother. Nothing. It also doesn't mean he won't ever have one again, especially if he has a growth spurt, or gets sick, or anything else happens that makes his medication a bit less effective. It also doesn't mean he can't have a random breakthrough event. Epilepsy is a mystery. We have no idea why B started having seizures, and not having a cause just makes it a lot scarier. For me, at least. 

Seeing your child have a Grand Mal seizure is not something I would wish on my worst enemy. Those scenes are with me forever, as is the feeling I had the first time, when I honestly thought B was dying. It's nothing like you see on TV. It's 1000 times worse. It's not comforting when the doctors tell you they can't pinpoint where the seizures are starting, and that they seem to be coming from everywhere. It's not comforting to know your child's medication might soon be changing, because of how it's affecting his organs. I can barely send B to school without a panic attack, so imagine how difficult it is for me to even think about letting him sleep alone. 

I know B deserves a normal life. I know he should be able to sleep in his own bed. I don't want him to be sad, or feel different, and I wish my anxieties didn't get the best of me. It's just a scary thing, letting go. I need to find a way to do it so that we are both happy, or else I'll just end up sleeping in his tiny, Ikea bed with him, and that's not ideal, either. 

What I Mean

Yesterday I wrote how we are in a better place than we were this time last year, which is true. However, in an effort to be totally honest, and not make you think that I discovered some secret to the perfect life (ha!), I want to tell you what I really mean.

1)School. We are definitely in a better place when it comes to K and school. This time last year we were about to start her in the district autism program. Little did we know, we had a big fight ahead of us to get her somewhere that was actually therapeutic. K's brand of autism is such that, right now, LRE for her is really a school considered most-restrictive, but it is 100% what she needs. We have successfully taken away one of the biggest causes of K's behavioral/anxiety issues by placing her in this school. It is a wonderful thing, not fighting your child every morning, or having them come home totally burned out, and in an awful mood. Not fielding phone calls each and every day. We are incredibly grateful she has this placement, but, and this is a big but, changing schools does not mean everything is perfect. It just means her educational experience is going well, but there's a whole life outside of school, and with that we still struggle.

2)Labels. K is "high-functioning" so there are some people who believe I cannot relate to real autism. Or that K is so far above their child on the spectrum, our life is peaches and roses. That what we deal with cannot compare to their own struggles. I'm pretty sick of the comparison, honestly. Like really, really sick of it. The outside-of-school part of K's life is not going well. She is struggling like I've never seen. What makes her "high-functioning", I think, is her verbal ability? Not that she is able to ever tell me what is wrong, and she mostly uses her vocabulary to talk about whatever she is perseverating on at the time, but she speaks, so life is easy peasy.

Obviously.

There is something I want to be clear about, and that is that K does not have Aspergers. B has Aspergers, K does not. She has autism. She might have a different brand of autism than your child, but it isn't Aspergers.

I probably shouldn't concern myself so much with labels, and whether or not they are accurate, but it's hard when people make assumptions, and have a totally wrong picture of your kid. Right now I am just trying to figure out how to best help my child, and we are up against some hard decisions.

3)"Changing how I look at autism has taken away all our problems". That statement is not at all true. Changing myself has helped because I am no longer fighting my kids. I am no longer trying to make them as "typical" as possible. I've realized how they are is how they are, and my job in life is to make sure people understand they are worthy as is. That "passing" is not my goal, because pushing for that can do more harm than good. However, even though I've changed doesn't mean the world around me has changed. Passing will always be the goal for most people when it comes to autism. Every expert will have you therapy your kid to death in order to get them as close to normal as possible. The quest for a normal kid goes hand-in-hand with an autism diagnosis, so it will always be a constant battle to make sure my children don't fall victim to those who cannot, will not, accept them as they are.

However, my kids both still face a lot of struggles. I don't believe autism is a gift, but I also don't think it's a curse. It just is. It's my children's neurology, and how they were born. There are good times, bad times, and in between times, just like in everyone else's life. Acceptance to me is not forcing them to be people they aren't. I'm sure I let them get away with things some people view as terrible, because I am giving in to their "autism", but, really, I'm just letting them be themselves.

Allowing them to just be doesn't take away the anxiety, though. The behaviors. The depression. The struggle to make friends, or the need to be flexible in their very rigid worlds. It just means I am trying hard to help them navigate the world as autistic beings, instead of pushing them to fit in as non-autistic. I don't believe making life more difficult is the answer.

I have found a lot of peace since I've stopped forcing my kids into the car for different therapies they clearly hated, and that weren't adding anything positive to their lives (and, hey, maybe your therapy schedule is working for you, and your kids are 100% happy. That is fantastic! That just wasn't our life, and don't be like me and hang on for too long once things stop working.) Finding peace, and having a peaceful life, are two different things.

Why am I writing all this? Because I don't think I was being honest enough. I think what I wrote yesterday could make some people believe I found some Holy Grail, and that our life had suddenly become easy. I don't want to make people think if they follow my lead, life will be perfect, and the struggles will end. K is almost 10 (in 2 weeks!), so what I share has to be limited. She deserves, and wants, privacy. I know that not sharing everything leaves readers to "choose their own adventure", but I needed you to know that while we are in a way better place than we were a year ago, we still have a long road ahead. So don't think I can't relate if you are going through a really rough time. I can probably relate more than you know.

If you've stuck with me this long, I thank you. I know I have a tendency to ramble. This life is a complicated one. I'm just trying my hardest to make sure my kids know they are loved and truly accepted for who they are, whether we're close to falling down that rabbit hole, or having the best day ever.

Bucking the mainstream doesn't mean everything has gotten easier, it just means I've stopped making things harder.

So, that's our truth, lest you think I've wandered off into some shiny, happy, fairytale land, and can't understand the struggles others face.

I get it. Trust me, I do.

Selfish

I have a confession. Lately, I've been feeling very selfish. Or maybe self-centered? All I know is that my #1 priority is my kids, and with a lot going on these days, I haven't been the best friend. Wife. Anything other than mother (and even that...)

More medical issues have come up with B, and in plain English, it sucks. Hard. In two weeks he will have an endoscopy to figure out if he has Celiac Disease. I won't go into detail about how we arrived here, because B deserves some level of privacy, but I can say he has markers in his blood showing he has a pretty high risk of developing Celiac at some point. That, along with other symptoms, have led his GI to tell me that even if the biopsy doesn't show Celiac, she will probably still want him to go gluten free.

Sigh.

B is already small. He barely eats, and what he does eat of course contains gluten. He doesn't have a big appetite, and so I fear taking away foods will leave us with other problems. Like starvation. I know I am over-reacting in a big way, because he probably won't starve to death, but when I say my kid is fine not eating, I mean it. I pretty much have to force feed him as it is, and that's with foods I know he likes. I've tried GF foods, and I can say with 100% certainty, if B has to go GF, we are screwed.

A lot of his issues with food are sensory based. His rigidness also makes it so that only certain brands and colors of food are acceptable. He eats no vegetables, and fruit is hit or miss, though thank goodness for year round watermelon. I don't even give a care if it's GMO. Anything to get him to eat.

I feel like we just went through a big change with the Epilepsy diagnosis, and we all just need a break. Smooth sailing for a while. But, I guess that isn't in the cards.

On the K front, things are going pretty well, but we are currently doing a med cleanse, and things could change. Basically, nothing is working for her anxiety anymore, and the meds are making her incredibly tired, along with making her gain a ton of weight. Just too much build up, I guess. So we are weaning her off, and getting a baseline. Her doctor is hopeful once we do this, her system will rev up a bit. She won't be exhausted all the time, and her weight will come under control.

K hasn't been off meds since kindergarten. Her anxiety is so bad, the side effects were "worth" it. Until now. I hope the transition goes smoothly, and I am hopeful her better school placement will help, but we don't really know what it will be like with K totally med free. All of this is adding to my own anxiety, and my own inability to look past my own kids to anything else.

On top of that, I am always worried that our perfect placement for K will be pulled out from under us. This is just a constant in my mind, and lately I've been worrying about it more. K is at a school where she is accepted and loved, and where she feels accepted and loved. She isn't forced to change who she is, or made to feel that everything she does is wrong. The focus is on her strengths, and what an awesome kid she is, not what an awesome kid should could become if she just did this, this, or this. I am always concerned that one misstep on my part with our school district (whatever that might be) could equal her placement being in jeopardy. The stuff nightmares are made of, my friends.

So, yeah, there's a lot going on, which means I haven't been pulling my weight as part of  my "village". At least I worry I'm not. I know there are people who expect certain things from me, but right now I can't get out of my own head. I want to, but I also believe you have to take care of your own family first and foremost, and sometimes you need to take a step back and do just that.

I am hopeful that things will settle down...soon-ish? That I can feel more comfortable about school issues, figure out all of B's medical stuff, and find a new rhythm. Not feel like I need to circle the wagons, and be unapologetically selfish. Although I guess I'm not unapologetically selfish, as I feel bad I can't be there for people as much as I'd like.

It's probably just part of being a parent. Not even a special needs parent, just a parent in general. Sometimes you have to take a timeout and focus on your own family, and their needs. And hope people understand.

You're Missing Out...

When you have a child with autism, there is a part of you that is always waiting for the other shoe to drop. For years I sent K off to school, waiting for that phone call home. A note in her folder. An inevitable meltdown. I lived holding my breath, not able to relax because I was constantly bracing myself for the next "bad" thing. Autism hung over my head like a dark cloud, waiting to ruin...everything. 

I used to live like this. I do not anymore. 

This weekend I read two things that hit me right in the gut. One was a dad saying he could never enjoy the good days with his child, because there would inevitably be bad days right around the corner. Another was a mother saying that autism was her whole life, and not a minute went by where she wasn't completely consumed by it. 

Both made me sad. Made me cringe. Made me realize how hard it is to get away from that type of thinking. I feel lucky I found a way out, although my way out was not one I wish for other people. K was mistreated by people we trusted, and because of this mistreatment I couldn't help but change not only how I viewed my child, but autism as a whole. I hope others can find a way out before their children suffer, which is why I write what I do. I have to. 

I can't say, though, that I never enjoyed the good days. I think I jumped for joy on those days, relishing every second. I did always end a good day wondering when that other shoe would drop. What price we would pay the universe for the one day I didn't feel like we were circling the drain. But, holding onto those good times is what helped me survive. Allowed me to get up every morning. Kept me fighting for my child. You must always, always, hold onto those days. Live in them. Be in the moment. They can be our greatest anchor when times get tough. 

These days, we have more good times than bad. Mostly because of how I changed the way I look at K, the way I treat her, the way I view her life. It's amazing how changing yourself can affect your child. How when you accept them, really accept them, and stop viewing autism as the big bad, everything gets so much easier. Sure, your kid is still autistic, and there are still days that are so, so difficult (I am not denying that), but when you let go of trying to "fix" your kid, or of your own resentment, well, I can't explain the weight lifted from your shoulders. 

My life used to revolve around K's diagnosis. It really was at the forefront of my mind every second of every day. Our weeks were filled with therapy after therapy, trying to get K as close to normal as possible. That's the goal, normalcy. Or so we're told. I really can't think of any other neurological disorder where you are told you need to force your kid out of it. Where the only goal is for them to pass as typical, and if you don't somehow reach that goal, all is lost. Where it's OK to abuse your child with chemicals and pills. Where it's OK to restrain kids, and toss them into isolation rooms. Where making sure autistic people know something is terribly wrong with them, and that nothing they say, think, or do is right, is just part of "therapy". 

It seems unique to autism, just the pervasive hatred of the disorder itself. Hatred that spills over onto the kids (and adults), because how could it not? Hatred that allows murderers to be sympathized with, and people to be harmed, physically and emotionally. 

Before I took a good, hard look at what I was doing to my child, sure, my life was autism, and K suffered for it. I didn't listen to her as I dragged her literally kicking and screaming to speech. To social group after social group. When our home ABA person would come, and she'd barricade herself in her room. I thought her behavior meant I wasn't trying hard enough, when in reality her behavior meant I was trying too hard. I had a kid who just needed to be, to exist solely as she was, without being forced to be someone else. I missed getting to know my daughter during those years, because I was hell bent on fixing her. It's my biggest regret. 

So now, my life doesn't revolve around autism. My life revolves around my kids. I am no longer burdened with trying to fix them, because they don't need to be fixed. I don't worry about their differences. I don't sit online all day trying to find the latest and greatest therapy. Our afternoons are spent at home, spending time together, not in waiting rooms. I enjoy them for who they are, and give them space when they need it. I maneuver our lives so that they are comfortable, and I don't wish for any magic pill or treatment to cure them of themselves. I am sad I ever did. 

I no longer look at a good day as just the lead in to something bad. I just try not to put my children in situations that I know are hard for them. It's a process, learning the ins and outs of your child, their needs, but it's worth it. I no longer hold my breath, waiting for the next meltdown, because I try my hardest to make sure my kids don't feel the need to react that way. No, I am not perfect, like, at all, but our days are more peaceful because I've finally learned how to parent an autistic child. I have made mistakes along the way, I'm only human, but I have come a long way. 

When you look at autism as the devil, as something that has stolen your child, you are missing out on that child. On everything they do have to offer. The love they have to give. Life might not be what you imagined, but it still needs to be enjoyed. There are definitely things I wish I could cure for my kids: GI issues, Epilepsy, but I don't need to cure them from their unique neurology. I need to step back and let them be themselves, and make sure they know they are everything that is right in my life, not what is wrong. 

Functioning Labels

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Boys and girls, today we will discuss functioning labels.

I know, I know, you don't want yet another post about how inaccurate these labels are. You don't want to hear one more parent of a verbal kid try to make it seem like their life is similar to those whose kids can't speak. You don't want to listen to one more mother ramble on about how her kid isn't very high functioning, even those said kid is out of diapers/can feed him or herself/is mainstreamed/is reading at a12th grade level.

I totally get it. I really, really do. I have gone back and forth about this debate, because a part of me thinks functioning labels aren't all bad. Children who can't feed themselves, dress themselves, use the bathroom, get their needs across with words, score poorly on tests we've decided measure intelligence, probably aren't functioning at a level society considers high. While children who can dress themselves, and feed themselves, and use the toilet, and communicate verbally, probably aren't functioning at a level society considers low.

Because that's how we define these labels. By how an outsider views our children. We decide functioning labels based on how complete strangers see our kids, and that can be dangerous. A stranger might look at a non-verbal child, and feel lucky their children are "normal". A stranger might hear the sounds our kids make, and decide there isn't much going on upstairs. A stranger might see our children stim, or meltdown, or do anything else autistic, and decide our kids are a waste of resources. Space. Oxygen. Who will never amount to anything. Who will always be a burden on their families. Who will never bring joy to another living person. (Who then feel sympathy for parents who harm their kids, because low-functioning=not worth much. Not human. Now worthy of love.) I have even spoken to parents who have written off their own kids as low-functioning, and seem to think their children are empty vessels, and that is truly heart breaking.

On the other hand, a stranger might look at K, and decide she is high-functioning, because she can speak. And, well, because she can speak. That seems to be the deciding factor, since she still stims, and has meltdowns, and is in a private school for kids on the spectrum. She has no friends to speak of, not ones who seek her out for play dates, or sleepovers, or a trip to the mall. Not without my intervention (aka, begging for someone to please hang out with my child.) She hasn't been successful in soccer, or Brownies, or dance class. She has anxiety that can shut her down completely. Although, she can mostly dress herself, microwave Easy Mac, and does use the potty (though there are very important aspects of this we have yet to master.) There are things she can do on her own, and things she can't, but to that stranger on the street she would be deemed high-functioning. One of the kids who might go to college, get a job, start a family.

And maybe she will do those things, in her own way. Just as all kids on the spectrum do everything in their own time, and in their own way. Maybe she'll live with us forever, because there is honestly a good chance of that happening. My only expectation for either kid is happiness. Just finding some way to feel fulfilled and happy in this world. That's it.

When it comes down to it, there are individuals considered low-functioning, who might end up accomplishing a lot. Unfortunately, based on outward appearances, some would never suspect they were capable of things like a college degree, or even a job. Then there are kids like K, who people might automatically judge as high-functioning. However, they might always been in the most restrictive classroom environment, or not live up to the expectations a stranger would set for them. This is where functioning labels can fail us. They lower or raise expectations based on first glance, which doesn't help any of our kids in the long run (not that I am saying K won't do great things, I am just using this as an example. Whatever she does, it will be great!)

But, I get it. I get feeling the need to label your child. To use those labels when speaking to others. Feeling that people won't understand how difficult life can be without those words. But, are we labeling our children as a service to them, or are we doing it because we want the world to feel sympathy for us, as parents? What are our motives? And how do they affect the outcome for our kids? Are we holding them back, because we are so transfixed on a couple little words? Are we pushing too hard? Would taking labels away benefit our children?

I don't have all the answers. I know there are people who feel strongly both ways, and I'm not here to tell you which is correct. I just want to talk about the effects of labeling, and if it helps or hinders our children. Do we use them, or take them away, and at what cost?

For now, my kids are just autistic (well, I still say B has Aspergers, which is a whole other post, right?) How they function is subjective, and I don't want to put them in any box which might limit what people think they can do, or make them feel bad because they should be doing more. I think children need to be looked at individually when we set expectations, not just as part of a functioning label. But, as always, I don't speak for everyone.

What do you think?

With Them, I am Truly Happy.

I read a blog post recently that rubbed me the wrong way. Maybe it was just the way I read it, since everyone else seemed to love it. It made me angry, though. And sad. Sad for the child on the other end of the blog.

If there's one thing I want people to know, it's that they should never, ever feel bad for me. My children are not a constant source of pain. Their mere existence doesn't make life hard. I don't want to switch lives with someone else, just to escape raising children with special needs. Being around them doesn't drain me of energy, making it hard to breathe.

Life is hard for everyone. Not just those whose children have special needs. Everyone. What we all search for are the good things in life that bring us joy. That fill our hearts. That make us look forward to waking up everyday. For me, I get all those things from my kids.

When I look at my kids, I don't see their list of diagnosis. I don't them as people making my life hard. I don't blame them for any anxiety or pain I ever feel. I see them as pure joy. As unconditional love. As the reason I get out of bed every morning. Sure, life isn't perfect, and we have hard days just like anyone else, but I never feel the need to escape them. They aren't parasites sucking away my happiness. They are my happiness.

Period.

People always say that parents of children with special needs need to take time away. Recharge their batteries. Step away from their kids, so that they can come back refreshed, and ready to handle anything thrown their way. Well, I refuse to believe that is the answer. Spending time with my kids, that is what recharges my batteries. That's what gives me the energy to fight for them, and make sure their lives are as full as possible.

Sure, I go out with friends, and a date night here and there is always nice, but I don't do those things to get away. I do them to reconnect with the people in my life, because those relationships are important. Not as a way to escape my life. Definitely not as a way to escape my kids.

I think we need to be careful with our words, because sometimes we come off as blaming our kids for all our troubles. Sometimes the only message we convey is that everything is hard, or that our children have beaten us down. That makes people thank their lucky stars they don't walk in our shoes, and that's not the message I want to send. Not to the general public, and especially not to my kids. I'm sure I sound ridiculously self-righteous, but I'm OK with that.

Maybe some do blame their children, and I'm sure there are parents who would trade places with someone else. But that's not me, and I wanted to make sure everyone knows that.

They give me strength, and I would follow them anywhere. 

Choosing to Medicate. Also? Words Hurt.

For as long as I can remember, the biggest challenge B has faced is his impulse control. Or, lack thereof. He'll just walk by someone or something, and need to hit or touch. He still runs out of buildings without me, and across busy streets and parking lots. The other day we momentarily lost him at an amusement park because he decided he wanted to go on a specific ride, and just took off running into the crowd. I have a scorch mark on my counter from when he wanted to see if a bottle cleaning brush would melt over a candle flame (while I was in the bathroom for 2 minutes, and he was four.)

In our meetings with neurologists and developmental peds, there has always been talk about medication, but until now it was never something I wanted to pursue. He wasn't really being affected by his own issues (feeling badly about himself, or doing poorly in school), so we went the therapy route, instead. We talked about strategies, and implemented tons of sensory input, in case that was the root of the problem. We figured as he got older, he would naturally mature out of some behaviors. Also, because B is a small kid, having him take medication known for zapping people's appetites wasn't something we wanted to do. The child barely eats as it is. 

But, since his seizures began, things have gotten a lot worse. He's like a pinball. That's the best way I can describe the change in behavior. He is unable to regulate at all, and has started getting in trouble at school. A couple days ago we were at McDonald's, and B walked by a little kid and bopped a toy out of his hand. He didn't even seem to notice he did it, and immediately gave the toy back. That wasn't good enough for the child's mother, though, who laid into B, telling him he was a bully, and why would he be so mean to her son? 

B just stood there, like a deer in headlights. I could see the tears welling up in his eyes, and the red shade of embarrassment creeping over his face. It was all I could do not to start screaming back at this woman, but I knew it would get me nowhere (sometimes you can just tell when it's not worth it to even attempt a conversation), so we gathered our things and left. 

The look on B's face when this happened made me realize we need to try something else. I refuse to allow his self-esteem to take a blow, because the electrical activity in his brain is making him more impulsive. I refuse to allow his school experience to go downhill. I refuse to allow people to judge him as a bully, or bad kid. I never again want to see that look of sadness and shame on my child's face.

The fact is, we aren't new to medications. K has been on a few, trying to mitigate her constant anxiety, so it isn't like we are against them. We have always tried other things before turning to meds, but some things just can't be helped any other way. B has ADHD tendencies, anyway, and the onset of his seizures really made them worse. We were hoping once his seizure med built up in his system, some of the side effects of his seizures would ease up, but that hasn't happened. I've also learned recently that a lot of kids with Epilepsy display the same type of behaviors as B, and medication can really help. 

So today we are meeting with the developmental ped, and asking for a prescription. I once had a doctor tell me that you should never medicate your child unless their issues are affecting them. Not if they are affecting you as a parent. Not if they are affecting a teacher. Only if they are affecting the child, which up until this point they weren't. I have really lived by those words, and feel we've gotten to the point where B is being affected, and where he's starting to feel bad about himself. 

So here we are. 

Sure, there's a part of me that wishes we could find a different way to help B, but we've tried everything else. And if this truly is being made worse by the seizure activity in his brain, then all the OT in the world won't make a difference. B doesn't deserve to be screamed at, and called a bully. He doesn't deserve to get in trouble at school because he can't control his body. He doesn't deserve for his seizures to make things worse. He deserves to be seen as the awesome kid he is, and hopefully with a little help, that will happen. 

That's a great kid, right there. 

It Takes a Village, but Actually...

Yesterday was a rough morning for K. I don't know why, exactly. Tiredness, 9yo girl hormones, something else? Maybe all three? She just started out a little off when I woke her up for dance. I gave her the option of staying home, but she wanted to go. Part of me wanted to talk her into staying home, especially because dance is an hour away, but I left the decision to her. I figured she'd have some iPad time on the way there, and maybe things would turn around.

They didn't.

K went into her class, but didn't participate. I figured that was OK. She was sitting, fiddling with her bracelet, and I thought maybe she was working through something. I hoped she'd start feeling better, and it would be business as usual.

But then she started crying, so I decided it was time for a break. We found a quiet corner, and she burst out in tears. Seeing her like this breaks my heart. Especially because I have no clue how to help her, or even why she is sad. K goes through this a lot, and when she gets this upset she starts pulling to the surface every negative feeling she has.

I stood there hugging her, trying to hold back my own tears. I told her we could just go home, but, again, she wanted to stay. Maybe I should have made the decision to leave, but she's going to be 10 in a few months, and I really want her to feel that she has some control over her own life.

We stayed in our quiet corner for a few minutes, and K went back to class. Things were a little better, and she started to participate a bit, but I could tell she was still struggling.

So was I.

I sat in the small stairwell facing the studio, watching my girl, feeling so alone. All the other parents were talking with one another. Laughing. Socializing. Their children were fine. They weren't sitting on pins and needles, hoping to see just one smile from their kid.

I sat there wondering if I made the right decision, letting K go back class. I sat there wondering what was really going on, and how I could help. I sat there wondering why my child has to deal with such anxiety she can't allow herself to have fun. Because that's what fuels days like this...constant, debilitating, anxiety.

I sat on the stairs, resisting the urge to cry, while life went on around me. I was at a dance class for autistic children, yet I felt no different from when K had tried typical dance classes. Like there was no one else there who understood. No one I could talk to. No other parents holding their breath. It was just a given their kids would have fun, be happy, be OK.

One thing that got me through was watching another little girl try to get K to participate time and again. She would take K's hand, or go over and talk to K while trying to pull her gently towards the group. The good thing about a class for autistic children is that there is no judgement on the part of the kids. No one was looking at K like there was something wrong with her. It was really hard to hold back tears, watching another student try so hard to include my child.

My daughter does have a village. It's a village of her peers. Children like her who don't judge, and who truly want her around. For that, I am grateful. So very grateful.

But as much as we talk about parents needing support, can we truly say that village exists? We are adults, and it's no one's responsibility to come take our hand. We all have our own little group of friends, but do we ever consider those on the outside? Those who could use some extra support? Or are we incapable of reaching out? Really forming the support system every blog, status update, and tweet, tells us is essential?

Could we take a lesson from those children who see someone having a rough time, and instinctively reach out? I think we all know the answer to that question.

The thing is, sitting on some stairs alone isn't going to send me down the rabbit hole. But, I am sure there are parents who are thisclose to the edge, and who is there to help them?

A village isn't really a village if it acts more like a clique. If we truly want to help parents in crisis, we have to be aware when someone is struggling right beside us. When K was struggling yesterday, someone saw that, and surrounded her with love. Didn't give up. Just kept taking her hand. And you know what? She made K smile. She made her feel just a little bit better, which to me is nothing short of a miracle.

It's always a gift when our children show us the way.

I'm not writing this because I am angry at the other parents from dance. That's not my point at all. Sitting there alone was hard, but for me it's not a big deal. I also know I've probably missed opportunities to be there for others. I am writing this because it brought to the surface the fact that we as a community always talk about reaching out when we see someone in pain, but how often does it really happen?

One day there might be a parent sitting on those stairs, so close to that rabbit hole, who really needs support. Who needs an invitation for a night out. Who needs someone to just sit and listen. The question is, are you ready to offer that support, even to someone you don't know? When you talk about a village, are your words empty? Meant just for those you already call friends?

Thankfully, K's class ended on a high note when she received a light up wand to take home (sometimes it's the little things), and seeing my child happy was all it took to make me feel better. I learned a lot, though, watching the interaction between my daughter and her classmate. I realized I don't want to just talk the talk. That I need to keep my eyes open for those who are struggling, and that words on a page are just words until you put them into action.

Light up wands make everything better. 

Epilepsy Sucks

We haven't been members of *this* club for very long, but I can already say I hate being here. Watching your child have one Grand Mal seizure (never mind 3 in a row), might be more PTSD-inducing than the worst IEP meeting. Worrying about your child's health elevates scary to a whole new level. Especially when you make the mistake I did, and Google. Or when you read what should be a bittersweet "pay it forward" story on Facebook, that ends up being just a "bitter" story to you, because it involves seizures... and death.

The truth is, I have no idea what is going on in B's brain. Neither do the doctors. His MRI was fine, which I am eternally grateful for, but it leaves us all guessing. What caused this sudden onset? What caused so many within just a few weeks? What does it mean? How will they affect him? Is this forever?

To add a whole new layer of worry, I definitely think B is having some activity that isn't being mitigated by his medication. He still sleeps with us, and I couldn't fall asleep last night because his body wouldn't be still. Everyone moves at night, but his body was twitchy, and rigid, and flailing about. It was almost like watching bits and pieces of one of his bigger seizures, if that makes any sense. It didn't look comfortable. Though he was asleep, I could tell his little body wasn't getting much rest.

Thankfully, I did think to video it. I sent 3 videos off to his neurologist this morning, asking (begging?) for answers. B has been more hyper lately, and his tolerance for anything has gone down the toilet, which I think is because he's just tired. Both my kids tend to get hyper/silly/crazy when tired, and B has definitely peaked. It has been worse since the seizures began, and isn't getting better. I am hoping there is something we can do so the seizure activity is less at night (if that's what it is), and he can get more rest. I think that would probably help with the rise in behavioral issues, too.

I do want to end this blog on more positive note, though, so here's a little victory from last night. B has severe sensory issues. So much so, that his diet is extremely restricted. I'm talking cheese sandwiches, some types of pizza, some snacks, and a few fruits. Oh, and plain cheeseburgers from McDonalds, which he would live on if I let him. Even some things I know he likes can be hit or miss, depending on the day. Food is a constant struggle, but I never stop offering different things. Last night I made pasta, which is something he never eats. I pretty much begged him to just try one noodle, and he agreed, which was a miracle itself. I added a tiny bit of teriyaki sauce to make them like the "Chinese food noodles" he claims to like, yet never actually eats.

It took a while, but he finally chose one noodle, and ate the whole thing. Without screaming about how gross it was. Without crying, and telling me he was "just kidding", and really didn't want to eat it. Sure, it took some time for him to build up enough courage to eat it (he even told me he was really scared), but he did! It was just the one noodle, but it was a HUGE step for B. I mean, huge. We are working with his OT on eating issues, but it's something like a 7 step process, from just tolerating food on the table, to plate, to smelling or touching it, etc, etc, until finally trying it, and sometimes I get a little antsy. I was so proud of B last night. I'm going to ride that noodle victory for a while.

Might not seem like much, but this is a BIG deal! 

A Bad Day?

credit

I've said it before, many times.

"Today was so hard. Why does it always have to be so hard?"

I've taken for granted the bits of joy, and focused only on the bits that aren't so joyous.

I've put K in situations I know are beyond impossible for her, then cursed the gods when things didn't end well.

I've lost patience with B, and pushed him to the point of melting down.

Yet, I'm always surprised. Always left wondering. Always asking why everything has to be so hard? Why must we face so many bad days?

But, I don't want to ask those questions anymore. When I let out a weary sigh, and talk about how bad the day was, I am, in essence, placing the blame squarely on my children's shoulders. I don't take into account my own missteps. My own inability to understand life isn't perfect for anyone, and see the gifts each day has to offer. I'm telling people that because of autism, because of my kids, there are days that are just plain awful. It's not a burden my children should have to bear.

I never want my kids to see frustration or sadness on my face, and think they are the cause. I never want my attitude to convey to the world that autism is some giant, evil, monster, and therefore so are my children. I don't want to give the "hard" times a life of their own, making them the only things people see. Bad days are a given for anyone, so why can't we shift the focus to the good days? Build up ourselves, one another, our kids, with those?

There is being honest, and then there is throwing a pity-party each day. There is doing the same things over and over again, and being shocked the results are always the same. There's never being able to share a story of something fantastic, without qualifying it with something bad happening while getting there.

Because we can never just share joy. We might lose our membership to the club if we did that.

We can rationalize it many ways, but each time you choose to tell the world how bad your day was because of autism, you are tearing your child down. Making them the cause of your pain. Especially if you believe there is no separating autism from your child.

A "bad" day means without your child, it would have been a good day, and that is just so sad to me.

I'm sure many of you think I am oversimplifying things. That life is so much more complex than what I've described, and how dare I accuse anyone of blaming their child when life gets hard! Just remember, what the outside world sees from us is what shapes public opinion. I know there are those who see autism as a fate worse than death, and can see nothing positive about the lives their children lead, but that's not me, and that's certainly not what I want the people around me believing.

Sure, there are days when life doesn't go exactly as planned, I am not denying that. Of course we are allowed to vent. The problem arises when all we do is vent, and feel that we can't share anything good without peppering our stories with little reminders of how it isn't always that way.

My hard days are mine, caused by my own reactions to the world around me. I need to own that, because it's just too easy to blame autism, instead of working on myself. It's been a long journey to this point, but how I see my life is my choice, and I'm tired of being miserable. It's time to start enjoying my children, and sharing that with the world.

What am I teaching them about autism? What am I teaching the world? 

For My Son

Dear B,

I never imagined myself having a boy, and wasn't quite sure what to think when the ultrasound showed, well, you. I knew girls. I understood girls. But a boy? What was I going to do with one? I knew nothing about sports, or trucks, or clothes that didn't come in pink.

But, I didn't need to know about any of those things. Why? Because you have become my teacher. You have led me on this wild, messy, wonderful journey of having a son. You want to learn everything, then share it with me. You have energy I wish I could bottle, and a laugh that can lift me from the deepest despair. I love your tight hugs, and I will continue to kiss you "a million times a day". Your face is just too sweet to resist. But, you already know that.

I know you march to the beat of your own drummer, and some might not appreciate that. I want you to know, that even when I am tired, and don't think I can hear one more fact about sperm whales, or MineCraft, I still love your spirit. I love everything about you. I wouldn't want you to change. Being different is a good thing. It will get you far. You are so smart, and think of things that would never enter my mind. One day, you will make an incredible crane operator/paleontologist.

My hope for you is that you continue to be comfortable in your own skin. You keep that confidence, and don't let others bring you down. That you remember what a great person you are. Those who think differently aren't worthy of your time.

I love you more than there are stars in the sky (and I am sure you will ask me how many stars are in the sky), and I will always be a person you can trust and rely on, even when life throws a bunch of dodgeballs at your head. No matter what, my love for you is unconditional. We have our ups and downs, and sometimes frustration gets the best of you, but just know, it's OK. I know this world can be difficult to navigate for a boy like you, but I will never get angry when you are struggling.

Having Aspergers means your brain is wired differently, but it doesn't mean that you are to blame for difficult times. I will never blame you for my own shortcomings as a parent. I will make mistakes, but I will always try to do better. I will never see you as broken, because you aren't. You are my perfect boy, and I love you to the moon and back, (and, yes, I'll "go ask Siri" how far that is).

Love,

Mom
xxoo

Go here to see the letter to my daughter. 

Most Imporantly

The first day of school, B came home with a sheet of paper meant for me to write his likes/dislikes, strengths/weaknesses. I filled out both sides, just with general information, but I felt something was missing. Something that really got down to the nitty-gritty of what I wanted his teacher to know. School has never been easy, for either kid. We've had more than our fair share of struggles. I really just wanted to get a certain point across. More than "B likes dinosaurs and talking".

So, after filling out both sides of the initial sheet (which, btw, was really only meant to be filled out on one side), I took out a piece of notebook paper and added page three.

 Most importantly,  I never want B to feel that something is “wrong” with him. I think sometimes therapy, and constant redirection, can make our special children feel they are not good enough. It's a fine line between helping them cope and be successful, and making them feel they need to change everything about themselves. 

B has Aspergers. He will always have Aspergers. I want him to feel proud, and not that he is less of a person because of any diagnosis. I want him to find a place of happiness and contentment in life. I never want him to feel he needs to change who is to be "normal". 

Of course, there are behaviors he needs to learn to mitigate better, but I don't want him thinking his struggles make him a bad kid. Maybe if we focus on his strengths, the self-confidence he builds will help temper the "weaknesses". 

I'm sure you didn't expect parents to take up several pages talking about their child. I just really need you to know that B is a great kid. No, I don't think my child hung the moon, but I also don't think he is in any way damaged. I think he has incredible strengths that can be overlooked because of a meltdown, or social issue, and those "weaknesses" shouldn't be the focus.

As you can tell, I am passionate about this. No one is perfect, and we all continue to work on ourselves. I just never want B to feel bad because of his neurology. I've been through it with my daughter, and want to keep B from ever feeling that way.

I've heard from other parents that you are the perfect teacher for B, and I'm excited about this year. Thanks for taking the time to read everything I wrote. I appreciate it more than you know. 

So, that's it. I truly hope she takes everything I wrote to heart, and doesn't view me as some whacked out parent. Honestly, I haven't yet moved away from last year (which, if you don't know, did not go well for either kid), but I am also not going in thinking this year will be the same. I can't. I have to hold onto hope that things will be different. That we've all learned from the past, and want to makes things better. Some might call me naive, but I'm not ready to give up. Maybe this year will be the year things go smoothly, and everyone works together for the good of both my children. I have to hold on to that possibility, because the alternative...well, I can't think about that only a few days in.

In Knots

It's barely 7am and I've already downed Excedrin and Zantac.

It's been a week.

Monday, B had a repeat EEG. Sleep deprived. Because we switched neurology practices, they wanted to do their own testing. I wasn't really excited about the prospect of another late night/early morning, but at least the new practice allowed 5-6 hours of sleep, as opposed to four.

I let B sleep until a little after 5am, after going to bed around midnight. We had already planned ahead of time that he would take a bath when he got up, because he said that helped the last time. He wasn't interested in eating breakfast, so I packed snacks, and we left the house at 6:30.

The hardest part of a sleep deprived EEG is trying to keep your child awake on the way to the hospital, especially when you live an hour away from said hospital, and that is with no traffic. Even leaving our house at 6:30am guarantees at least 30 mins will be added to the commute.

On the way to the first EEG, B stayed awake on his own for about half the ride. On Monday, I had to start yelling, and singing badly, and tickling his leg, before we even left town. He is not a fan of being kept awake, so the yelling went both ways.

Then, about 30 mins into our ride, he became silent. I looked in my rear view mirror, and (insert expletive here), he was having a seizure.

Of course we were on the highway, with no good place to pull over, so I booked it to the next exit. I tried timing the seizure, but my iPhone is nearing the 2 year mark, so it has begun to fail me. The second I hit the clock app, it froze. I contemplated throwing it out the window, but held back. I closed the app, and opened the camera, hoping to video some of the seizure, since timing it wasn't going to work. Thankfully, the camera worked, and I was able to get a bit of the seizure on video before pulling off the highway (I basically just held my phone in his general direction, hoping I actually recorded something useful, since, you know, I had to face forward to actually drive).

After I pulled over, I basically just made sure B was OK. I stroked his head as he seized, whispered comforting words, and waited for it to be over. Please, please, don't let this one be the one that goes beyond 5 minutes. Taking him out of the car and giving him diastat in a random parking lot was not ideal.

Thankfully, he stopped seizing after a few minutes, and immediately fell asleep. I got back in the car and started driving, paging the on call neurologist as I drove. She called back after what seemed like an eternity, and I asked her what I should do. Go to the clinic for the EEG? Go to the ER? B was OK. Sleeping, but OK. She told me to just go get the EEG done. They'd assess him there, and send us to the ER if they thought he needed to be checked.

It felt like forever before we reached the hospital. All the while I was cursing the fact we live in the boonies, too far from civilization, and the fact that not enough people use public transportation to get into the city, clogging up the roads when I'm in a hurry! You know, the rational way you think when under a great deal of stress.

When we pulled into the parking garage, B woke up, and seemed OK. He walked himself into the hospital, and was tired, but acting more like himself. We were told the on call doctor was on her way in (she apparently wasn't actually at the hospital when we paged her), and we started the EEG. It was a breeze. B was so tired, he easily fell asleep, and I sat in chair next to him, trying my hardest to stay awake.

The EEG tech didn't make him blow on a pinwheel like last time, and said she wouldn't bother him with the strobe lights, either. He was exhausted, already had one seizure that morning, and we just wanted to talk to the doctor and go. She took all the leads off, and we were both trying to wake him up enough to go when it happened again.

She and I both noticed at the same time. B's head had turned to the side, and something wasn't right. Just as I looked up to tell her he was seizing again, she was already out the door to find the doctor. I guess we lucked out in a way. The neurologist was there to witness the whole thing. Sure, I had my video from that morning, but it wasn't long at all, and it's always good for them to witness an event themselves.

After the seizure was over, we moved B into a different room to sleep. The doctor went to speak to her attending, because she felt B needed to be admitted. She wanted to give him a big dose of seizure meds, to really raise the level in his system, and make sure he was OK. Of course, we had to wait hours for a bed to be ready, but at least we were in the hospital, just in case.

I called my husband, and asked him to come from work so that I could quickly (as quickly as possible) drive home and get things for us to stay overnight. He offered do it for me, but, well, he's a guy, and I didn't trust him to pack anything we'd actually need. I was also hanging by a thread, and needed control over something. 

Because B hadn't eaten that morning, they wanted to take advantage of his empty stomach and do a sedated MRI. Of course, that wouldn't happen until 6pm, so I felt comfortable running home. I'd be back in time for anything important. My husband showed up to relieve me (I think around lunch, and I only say that because our EEG tech was eating when I left. I really have no idea what time it was), and cursed all the way home, again, that we lived so far away (but at least no traffic this time).

About halfway home I received a text from my husband. B had another seizure on the way to his room.

I was still 30-40 mins from home, and just wanted to turn around and rush back. It took all my strength to keep it together, and not go 100 mph down the highway. Somehow, though, the closer I got to home, the more calm I began to feel. Yes, B had three seizures in one morning, but he was where he needed to be. I didn't need to kill myself getting back to him. I had to relax, gather our things, and keep my wits about me. There was nothing I could do about the fact we live an hour away from the hospital, but I'd be back there soon enough, and B was in good hands.

Of course, really, I was probably just in a state of shock. I had reached the period where you kinda go numb. Where your brain just turns off so you can muddle through. Whatever it was, it was better than the raging anxiety I had been feeling.

I got back to the hospital just in time to meet with every single medical student in the building. It wasn't awkward at all walking into B's room, and seeing him surrounded by a bunch of people, who all turned to stare at the same time (as I haphazardly carried every belonging we own into the room. I might have over packed). I think my husband was relieved to be let off the hook. Let's face it, he's a good dad, but I'm the one with all the answers.

B pretty much slept the day away, waking up a few times to throw up (no one knew why, and it started before they gave him the IV meds, so it's a mystery. Maybe just the stress of having 3 seizures in the matter of a few hours, and no food).

Child life came in, and brought him tons of dinosaur toys, which he loved when he finally woke up a bit. Especially this one remote control dinosaur (that is no longer manufactured, and which Amazon Marketplace wants $600 for. I am hoping I can score it on Ebay at some point, because, seriously, he loved this thing).

Ben finally started to wake up, and get back to his usual hyper self, right before his MRI, where they doped him up again. The MRI took about an hour, so I used the time to finally eat (I had been up since 4am, and had yet to even get a drink of water), and tried to relax. Once it was over, we sat in recovery for a couple hours (watching a doped up kid try to eat a Popsicle...best thing ever. Brought some much needed comic relief to the day), then headed back to the room.

By that time B was starving, but of course it was around 8:30pm, and the kitchen was closed. I went to the 24hr cafe, where I attempted to get him a grilled cheese, but even though they had bread and cheese, the guy refused to finagle me a sandwich. So, s'more pop tarts and chocolate milk, it was!

Because B had slept all day, he didn't end up going to bed until around 1am, when I think the nurse took his iPad away and called it a night. I fell asleep well before that, as hard as I tried to stay awake. The next morning he was back to himself, and after another dose of IV meds, and a visit from a friend (thank goodness, because B was so bored he was climbing the walls), we got to go home.

His MRI came back fine, as did his blood work. Nothing glaringly obvious as to what is causing his seizures. We have an appointment with genetics Dec 3rd (which seems far away, but I'm told is actually great. There is a waiting list right now, so getting a date at all is apparently a miracle).

So now we wait. We wait to see if he has more seizures. We wait to see if his meds work. We just wait. We have an appointment with our pediatrician next week, and a follow up with neurology in a month. I hate no knowing why this is happening, but seizures can be such a mystery. For now B will continue to sleep with me, and I somehow have to find a way to be OK with him starting school. Every fiber of my being just wants him home with me, all the time. I just can't trust anyone else, even though I know I have to.

The fact that B has epilepsy is taking it's toll on him, too. Having to wear a life jacket whenever he goes swimming (but it's the shallow end, mom!!!!! Insert giant meltdown here). Having to quit gymnastics until we know things are under control (he might not be able to ever go back, since it's just too dangerous in case he was to seize). The fact that school will be different for him. He'll need to be helicoptered over, at least for a while. Yesterday he got really  upset over something, and said, I wish I never had seizures!!!

It broke my heart.

I wish you never had them, either buddy. It kills me not being able to fix what's wrong. But, maybe I can find him that super cool dinosaur, and make things a little more right in his world.

B, with the coolest dinosaur ever. 

The Guts to Make a Change

We saw a new neurologist last week. Of course I second guessed myself 1000 times, thinking maybe I was just being "crazy" for wanting a new doctor. Maybe I had expectations that were too great. Maybe people thought we deserved special treatment, instead of waiting like everyone else.

Can you tell I struggle with self-confidence?

In the end, it all worked out wonderfully. We saw a new doctor who listened. Who sat patiently as I asked many, many questions. Who made me feel like I was part of the decision making process for my son. Who understood how scary it was for us. Who didn't make us feel bad about wanting to be seen ASAP (like a sit down less than 3 weeks after the abnormal EEG, and second seizure. Awful to want that, I know). Who didn't downplay what was happening, just because there are those who have it worse (it's not a competition).

He explained the EEG B already had (something the other office had yet to do, even though I pretty much begged for answers), and told us he did in fact have a seizure disorder. Welcome to the world of Epilepsy.

He discussed medication with us, and gave us options. He told us he'd be more conservative with the medication B had been prescribed (the titration period), if we wanted to continue with it, but also supported us changing to something else (we did). He told us they would do blood testing, just to make sure there wasn't a genetic component to the seizures, and to rule out other medical causes. He gave us paperwork for school right then and there. He ordered another EEG so he could compare the two, and decide if B needs a MRI, or other tests.

It was just a totally different experience.

I don't think we're special. I don't think we rule the universe, and how dare a doctor not want to talk to us right away. I just think we are scared parents who deserve a doctor to answer their questions. Something everyone deserves. I am glad I had the guts to switch practices. That I was able to put away the "too nice" part of me, and do what was best for our family, especially B.

I'm hoping this is just the beginning of me feeling more comfortable speaking up, and advocating for our family, in all aspects of life. Sure, not everyone will like it, but I guess all I have to say to that is...too bad.

The little dude is worth it. We all are. 

You're Fired!

I am too nice. It might not seem like it, but a lot of the time I avoid confrontation at all costs, and give people the benefit of the doubt...to a fault. I don't want to be a bother. I don't want to make waves. I hate people being angry with me, even when they are at fault. Not that I don't get upset, I'm just really bad at speaking up. I have such bad anxiety, drama of any kind takes its toll. Of course, holding it all in takes a toll, too, but I just really hate fighting with people.

Today, though, the gloves came off. 

As you are well aware, we are trying to navigate this new world of seizures. We chose the neurology department we did because they are associated with the center B was diagnosed with Aspergers, and it's also the same hospital that's affiliated with his GI. I like to keep things under one roof if I can. 

At first, I thought things were going swimmingly. We got our initial appointment just a few days after his first seizure, and ended up getting his EEG the day after his second (not that there wasn't some drama there, as the doctor made it sound like an emergent situation, until she called back and said there were no openings the next day, so it was fine to wait until the following week. Dear doctors, let me fill you in on something: once you say something is emergent, it stays emergent in a parent's mind. You can't come back and change your mind. Also, thank goodness for cancellations). 

I was promised a call back the same day as the EEG (a Friday), and that we would discuss further testing and the follow up appointment then. 

But the call never came, and I went into "too nice" mode. Ben isn't her only patient. I can't expect answers immediately (even if promised them). It's fine, I'll just wait...

Friends prodded me to page the on-call doctor Saturday, though, to get the results. I did, and was glad I did. I really wanted to know, I was just slipping into my "too nice" ways, and pretending I was fine waiting until Monday. 

Monday came, and the neurologist finally called. I had 1000 questions, but she didn't want to go into depth until we met face to face. The next week or two we'd be able to meet. She'd have them call me the next day to set up an appointment. 

Again, no one called. Twenty minutes before I was to leave to get the kids from camp, I called the clinic myself. After a very long time on hold, I was told we could come in Aug 26th. 

Three weeks away. 

Also, we had planned a much anticipated camping trip, and would be gone the 26th. But that was neither here nor there. The 26th was unacceptable. I was not waiting three weeks to get any answers, a school plan, or talk about further testing (which the neurologist already told me she wasn't planning...?).

Back on hold I went, after the very rude admin lectured me on when Attendings work, and how I wasn't allowed to see the resident without the attending there. Fine, I get that. I'm still not waiting until 2 days before school starts for an appointment, though. 

After another 20 minutes, I'm told the best they can do is the 23rd, with a totally different doctor. By this point, I had already decided I was transferring to another hospital, but I politely (or maybe no so politely) thanked her and hung up the phone. 

Maybe my expectations are too high, but my kid had 2 grand mal seizures in a week, and I want to pinpoint where they are coming from (if possible), why they are happening (if possible), discuss medication choices in detail, and do further testing. A MRI. Extended EEG's. Heck, I even want genetic testing done, because I know our insurance will pay for it, and I want to cover all bases. What I don't want is to float around in limbo until the end of August, or September, even, because "that's just the way it works". 

It would be different if the doctor was willing to tell me anything over the phone, but she's not. I don't know why. I don't know if that's common practice. The fact that I can't get one teeny question answered without a face to face means I better get that face to face ASAP.

What it boils down to is that I'll never be happy with this practice. They don't care about their patients the way they should. They don't care that parents, brand new to the world of seizures, are scared and can't wait almost a month to talk about...anything. 

Thankfully, I have great friends. Great friends who have experience with this, and who call their neurologists to asks what they can do for me. Who explain B's situation, and ask when we can be seen. 

So, now we have a plan. I've already left a detailed message for our pediatrician, who only needs to call the new hospital and say B needs to be seen in the next week or two, and they'll fit us in. Unlike our current practice who won't even go out of their way to feign niceness to a scared mother. 

So, Massachusetts General Hospital (yeah, I'm naming names), you are fired. I will tell friends to look elsewhere when their child needs a specialist. No one deserves to be treated the way we were these past couple of weeks. Maybe seeing another kid with a seizure disorder is no big deal to you, but it's a big deal to that kid and his parents. At least learn to fake concern. 

I'm glad I found the strength to stop being nice. This is my kid we're talking about. I'm done being nice. 

 I’m not ready to make nice

I’m not ready to back down
I’m still mad as hell and
I don’t have time to go round and round and round
It’s too late to make it right
I probably wouldn’t if I could
‘Cause I’m mad as hell
Can’t bring myself to do what it is you think I should

                                                    -Dixie Chicks

Dizzy With Worry

I paged the on-call neurologist yesterday. I didn't want to wait until Monday to hear B's EEG results, and I had a great friend (see her blog here) give me the push I needed to make the call (sometimes I'm way too nice, and I really have to change that, in all aspects of my life).

The results of the EEG? Abnormal, with seizure activity. Not surprising, I suppose, but I was holding on to that last shred of hope that this was all some giant fluke. The neurologist apologized profusely for no one getting back to me Friday, and told me he would make sure our actual doctor called me first thing Monday (if she doesn't, she's getting a page).

So, what does this all mean? Well, first and foremost it means I can't leave Ben alone. He had two big seizures in a week, and now I feel like we're just waiting for number three. The medication he is on won't work right away, and the dosage he is on is so low, I doubt it's useful at this point. It takes two months to reach the full dosage, so from now until then, I'll be sitting on pins and needles just waiting. He pretty much has to be with someone at all times, which he hates, but is necessary.

This week B is supposed to go back to camp. He was only there two days last week, because of doctors appointments and seizure #2. He really, really wants to go back, they are fine with having him there, but I am 100% not fine with sending him. Camp is a long day, from 9am-4:45pm. We are in the car at 8:10, and don't get home til around 5:30. My brain is screaming at me that the chances of him having a seizure at camp is too great. While I know they are perfectly capable of handing it, should it happen, I don't want it to happen when I'm 45 minutes away, and he's with people who are not me. I haven't made any final decisions, but it's going to take superhuman strength to let him go...

A big part of me says until we have seizure control, and really know what's going on, it's irresponsible to send B anywhere. I mean, even today, a gorgeous Sunday where we have no plans and could do whatever want, I find myself just staying home because, what if. 

Two seizures in eight days. Abnormal EEG, showing seizure activity, even when he looks fine. What if seizure #3 is just around the corner?

Yes, we are not the first family to deal with this, but it is my first time dealing with it. Things have changed so much since last week, when we thought (hoped) the whole thing was just a one time deal. I feel like I'm armed with very little information, and that doesn't feel great. The sooner we can get another neurology appointment, the better.

This is a big change for our family. It's going to take a while to work through it all, and get to a place where I'm comfortable even going to the bathroom without eyes on B. Where I don't wake up and go to bed scared.

Where I find peace with our new, new normal.

Two in Eight Days

I was just about to let B sleep in his own bed. He was over sleeping with mommy, and my husband was over sleeping with the dog. I was finally starting to relax a teeny tiny bit.

Then Thursday morning happened.

We were on our way out the door to camp. K had a "camp out" that night (kids 7 and above get to sleep over), so the kids ran ahead to get in the car, while I gathered all her stuff, and made my way downstairs.

Suddenly I heard a someone banging on the sliding door at our deck. I assumed one of the kids forgot something, or fell and needed a band-aid (because usually when I tell them to go get in the car, they take it to mean run around the yard). I then heard my husband start running, right as I exited the basement and walked into the garage, where I saw Ben, laying on the driveway, next to my husband's truck.

At first I thought he had just fallen down, but then I saw him convulsing. Exactly the same as the Wednesday before. Another grand mal seizure.

I was better this time, knowing what was happening. I kept my wits about me. I made sure he was safe, and spoke soothingly to him. I told my husband it was pointless for us all to go to the ER, and for him to drive K to camp, and I'd take B. I told him to reassure K, who had been witness to the seizure this time (and who apparently listened when I drilled into her head 1000 times to tell us if Ben started acting weird).

We went to a different ER this time. One affiliated with our pediatrician's practice. I talked to Ben the whole way there, asked him to squeeze my hand, and called my husband, reminding him to please, please reassure K. I was worried about her, too, but knew camp was the right place for her (it's a camp for kids with special needs, 1:1 ratio, they would also help her process what happened. She wouldn't have to sit in the ER for hours. It was the right decision, and she had a great couple days there).

The ER doctor ended up calling our neurologist to let them know B had a recurrence. They took blood to make sure his glucose levels were OK (a seizure can make your blood sugar drop, but the two pieces of Nutella toast B had for breakfast weren't  letting that happen). They watched him to make sure he didn't have another seizure right away. Made sure he came out of it. Same as before.

After several hours we were allowed to leave. B was back to himself, remembering nothing. He asked to immediately go to the store to get the new toy I promised (he has been incredibly spoiled this past week, and I'm completely unapologetic). I slowly started to realize the gravity of two seizures in eight days. What it meant. That we were really in it, now. We weren't lucky enough to be in the "one and never again" club.

The neurologist's office was able to get him in for a sleep-deprived EEG Friday morning, and the doctor called me Thursday night to tell me they'd be starting B on medication. We'd discuss further testing after the EEG was complete. Our pediatrician called me yesterday to go over everything that happened. She was in shock B had another seizure.

Aren't we all.

So, that's where we are. Right now I am just waiting for the EEG results. I had hoped the neurologist would call yesterday, but she didn't. I sent her an email this morning (she'll regret ever giving me that!). I know we aren't her only patient, and I know test results don't come immediately, so I won't page her and demand an answer. There's nothing we can do over the weekend, anyway, and we already have medications and instructions, in case anything else happens. I'll page her Monday morning, if it comes to that.

The medication B was prescribed takes six weeks to reach full dosage, so I'll be on pins and needles waiting for another seizure. Plus, I know these meds don't work immediately, anyway. School starts August 28th, and I'll probably take over transportation to and from school. I don't want B on the bus, and I am not even sure I want him on a special education van, just because we only live about three minutes from the school, and he could end up on the van for 30 mins or more, having to pick up/drop off other students. I want him home with me as much as possible.

We meet with the school nurse before school begins, too. I told the neurologist to provide a detailed seizure protocol, and I'm sure we'll have to add accommodations to make sure B is never left alone. He will have a 1:2 aide, anyway, but he can't be walking around the school alone, or be allowed to play on the playground equipment without being watched. I am hopeful the school goes along everything, and I can send B to school feeling as comfortable as possible (which, admittedly, won't be very comfortable at all).

Not exactly how I wanted to spend our summer vacation, but that's life. Always unpredictable. I'm just hoping this upcoming week is very, very, very boring.