Friday, February 28, 2014

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.

Sunday, February 16, 2014

Ohana Means Family...

We went to Disney when K was in kindergarten. It awful trip. A lot went wrong, but the worst part was how much K didn't seem to enjoy being there. Even with the old disability pass (that is, the good one), it was rough. B, however, had a great time. I've often thought about taking a trip to Disney with just B. I always feel a twinge of guilt when I think about going without K, but I tell myself it's fine because she didn't like it, anyway. She'd be happier just staying at home with my husband, or another family member.

I've decided she'd have a much better time not going.

The thing is, K says she wants to go back. When we talk about Disney, she gets excited at the prospect of riding Small World 14,000 times (in a row.) However, spending thousands of dollars to ride Small World just seems ridiculous to me. Again, I tell myself she'd have a better time staying back, and that B deserves a vacation that isn't run by his sister.

I've never been able to fully convince myself of this, though, and while watching Lilo and Stitch tonight, I found the perfect way to explain it:

Ohana means family, and family means nobody gets left behind. 

Hearing that little catchphrase really drove it home. The trickle of guilt I usually feel when thinking about planning a vacation without K, turned into a waterfall of guilt.

I've decided that K would be better off not going, regardless of what she's told me. I've told myself the rest of us deserve a trip where we don't have to be ready to pull the ripcord at a moments notice.

It's shameful, I know.

We are a family. Period. Leaving out one member to make things "easier" just isn't OK. No matter how I try to rationalize it, and no matter how many other parents tell me they've done it without regret.

I know it's not uncommon in the autism community to do things as a family without the affected family member. To validate those decisions by saying it's better for the child (or a sibling.) If I'm honest with myself, I know K wouldn't feel good about being left at home. I'm sure even the most affected individual notices when everyone leaves without him/her. I want both my children to know they are always welcome.

Teaching my kids that we unconditionally support them will make B a better man, and K a more confident woman. Not hiding my child away shows the world that everyone has worth, and our kids really are different, not less. 

So, that's my new mantra. I'm sure Disney won't mind if I borrow it, right? (They'll totally mind, so, shhhh!)

Ohana means family, and family means nobody gets left behind. 

Quality time with my girl. 

Wednesday, February 12, 2014


I'm in a blogging slump. I remember a few years ago, I couldn't blog enough. Sometimes I would write several blogs/day, and have trouble not publishing them all at once. Now, I feel like I really have to sit down and think about something to say.

I really believe it's because the kids are older. I don't have to blog every single thing that happens, because we are kinda just living life. I know I could write about K's progress and experiences, but I almost feel bad acting excited about those things. I don't want my expectations to be so low that even the most mundane things bring tears to my eyes. I want to give her more credit than that. She's getting older and I want to treat her like I would any other 10 year old, and that means treating her, well, like any other 10 year old. One thing I do not do is infantilize my kids. Autism or not. Not even for a good blog post.

And, really, how many times can I blog about my worries over B's seizures before it gets tiresome? Plus, the stuff I really want to blog about (anything having to do with school), is off limits after the fiasco last year. It pains me not to be totally open and honest on the blog, but since Big Brother is watching, I don't have a choice (it is funny how I read other blogs where the authors are SO specific about their school situations, and nothing happens, and I can't even allude to it anonymously...but, I have to keep the peace.)

Sure, there are times we really struggle, but I don't feel comfortable getting into all the gory details. Don't mistake my writer's block for a boring life, it's just hard to pick and choose what to talk about these days. What my kids would want to read someday, since once it's out there, it's out there.

I hate to think I would ever stop blogging, since it's such an outlet for me. It's just hard when your kids reach a certain age to figure out where you are going, and what people are interested in hearing. Where your story ends, and your children's begins...the part that isn't yours to tell.

So, yeah, that's why I haven't been blogging a lot lately, although I have been trying to be more active on my Facebook page, so if you haven't liked that already, it might be a good idea to do that NOW.

I do think we have a lot of transitions and changes upcoming, so maybe I'll be awash in stories once again...for now, Facebook might just be the place to be.