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.

Ohana Means Family...

We went to Disney when K was in kindergarten. It was...an 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. 

Slump

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.

10

K's birthday came and went. She was excited for double digits, although sad she would no longer be nine. Each year she cries a little, missing the age she was before. The epitome of not liking change. At least 10 is special. She had a fabulous (and I mean, fabulous) birthday party, complete with a man who brought all her favorite animals, a My Little Pony cake, and a sleepover with a couple friends. Her first real sleepover. Something she's seen on TV, and something she desperately wanted. Make-up. Nail polish. Snacks. Hanging out in our playroom, sans annoying parents. I am pretty sure there was a My Little Pony episode she used to plan the event (not kidding.)

K thought the day was perfect. The sleepover, perfect. I chose girls who are nice to K, and ones I knew wouldn't cause tween drama. Sure, there were times K was off doing her own thing, but there were also times she was totally engaged with her friends, as they slathered on pounds of make-up, or watched TV. The next morning she happily sat and did Shrinky Dinks with one of them. K declared it her best birthday, ever, and it was. She was happy, like really happy, which is something I don't often see.

Of course, I had a more difficult time with her turning double digits. Eight years until 18, kept going through my head. Where are we? Where are we going? How will we get there?

She's still young, people tell me. She is, but these past 10 years have flown by, and we are still gasping for air at times.

She's doing so well, people tell me. Except, they don't see when she's not doing well, and I am not one to overshare.

We have 8 short years until she's 18. We have puberty. We have the hardest years of a kid's life ahead of us, and it scares me. I know I'm supposed to be positive all the time, but the older K gets, the easier it is to let doubt take hold. There are so many things K wants out of life, things she wants, but the way she is wired makes her path so hard. It just does. I know there are some who don't want to hear that, but it's the truth.

We recently had some new testing done, and it makes me sad. Let's just say, being treated a certain way, and basically traumatized by certain people (you can guess where this all happened), have killed any ability she has to cope. She has so much potential, but reaching it? Not easy. Finding good school placements? Not easy. Having faith it will all be OK? Not easy.

I know these tests don't define K. I know they aren't always accurate. What the psychologist saw was a true representation of K, though, beyond academic skills, which can wax and wane. Beyond any box she checked off, or circle she filled in. She saw K as a person, as we see her, and that part is the most important. It's what gives us the most accurate information.

Her doctor said K was one of the hardest kids she's tested. Heck, they didn't even finish all the tests. So, she's a kid you might look at and say is high functioning, but she doesn't function highly at all.

I shouldn't be sad, but I am. I can't help it. I'm a mom, it's what we do. I desperately want K to be accepted and loved and given a chance. I will always fight for that. Unfortunately, we don't live in a perfect world ready to love and accept and give kids like K a chance. We don't live in a world where it's easy to be different.

I do need to live in a world where my my kid is happy and fulfilled, though, and even that, right
now, is hard to imagine.

I wish everyday could be like her birthday. Where she was excited and happy and unconditionally loved by everyone around her. I wish I looked at 10 the same, innocent way, she does. The one thing that gets me through is reading blogs by those who are young and autistic (Autism Speaks debate, aside.) Yes, we only have 8 years, but we also have 8 whole years. There's hope, and I just need to focus on that.

10 is magical to my girl. I hope I can see the magic, too. For now, I'll just sit here and relive that perfect day.

 

 

What We Need to See

There was a blog post that made the rounds yesterday. I saw it several times on Facebook, but I didn't read it until this morning. The first few lines of the post showed up whenever the blog was shared, and I almost shrugged it off because I saw the word "apraxic". In my ignorance, I decided the post wouldn't apply to our lives, since apraxia is not a diagnosis either child carries. (Apraxia is a separate disorder from autism, and is what makes a person "non-verbal". You don't need to be autistic to be apraxic, and you don't need to be apraxic to be autistic.)

You can go read the post HERE.

As I began to read, it hit me. Hard. This blog post was so much of K's life. No, K isn't non-verbal, but she also isn't able to fully tell people when she needs something. Really needs something. Things like a break, quiet, or people to just stop throwing words at her when she isn't able to process it all.

It reminded me of a dance class last fall. K was struggling. Just having a really hard time. Because K is a verbal kid, and because there are a lot of things she can do, even I sometimes expect too much. In the middle of class, K stopped wanting to participate, started to cry, and tried to leave the studio. At the same time, her classmates were cheering her on, chanting her name, and trying to get her to join with them.

I stood there feeling aggravated. Why wouldn't she just go to them? They were cheering for her! They wanted her to join their circle! This was all positive, right? So why was she standing there, on the verge of a meltdown?

I just didn't get it. I was looking at it through my own eyes. My own, non-autistic eyes. A group of people cheering someone on? How could that be a bad thing?! I was angry. I just couldn't understand. I allowed my own feelings of embarrassment get the best of me.

It wasn't about me, it was about K. How she was feeling. How everything sounded and felt to her. How she needed someone to just get, in that moment, that she wasn't being a bad kid.

She was already overwhelmed, standing inside an echoey dance studio, bombarded by words. The loud demands of others. To K, their voices must have equaled a thunderous roar. One that upped her anxiety, and made the tears come faster.

Maybe their cheers made her feel worse about needing a break. Maybe she felt embarrassed that all eyes were on her, when she just needed some time alone. Maybe the whole situation, as positive as it looked from the outside, made her feel even more different, in a place where her differences shouldn't have mattered.

What she needed was to be told it was OK to get away for a while. For me to take her somewhere quiet, and not make it seem like a bad thing.

I didn't look at the situation through K's eyes. I didn't respect my own child. Yes, she's verbal, but in those moments, words fail. I didn't realize until reading that blog post just how much I had failed that day, as well.

I thought I couldn't learn from someone whose experience seemed so different than ours, but I was wrong. Our kids are more alike than we know, and trying so hard to separate "levels" of autism means we are probably missing out on a whole lot of information our kids need us to hear.

Lesson learned.