epilepsy

All posts tagged epilepsy

Describe something you’re currently worrying about and imagine how it gets resolved involving a mythical beast, limit 1000 words.

It’s kind of obvious, but I’m mostly worried about Daniel right now.  His surgery is in eleven days (from the posting of this entry), and it’s a big one.  It’s major brain surgery, and while that’s kind of an obvious “well, duh” thing to worry about… I don’t know.  I can’t shake a bigger feeling.

And trust me, I’ve tried.  I’m tapping almost daily on obsessing over his death, over his recovery time, over the changes that will happen if he lives through the surgery… I want to be pleasantly surprised, but not remembering how to walk is common.  Having wholesale personality changes is common.  Being someone else when he comes out of rehab is common.

I don’t want someone else, I want my son.  I can’t let myself be selfish enough to want my-son-like-he-was-before, my son who sang the ABC song and was learning basic math at two years old.  That would be unnecessarily cruel.  I do want my smiley boy who crushes my cheek in his hugs and plays “cookie, no cookie” on the way home and develops new repeating games every day.

If I could call on any mythical creature to help, it would be a Caladrius, a bird said to be able to take the sickness or disease away from a person and get rid of it altogether.  At the same time, maybe I need a Unicorn that can cure any ailment.  Or maybe I need the centaur Chiron, who traveled the world and collected all the wisdom of the medicines in an effort to save himself.

And maybe none of that would work because this is just how he’s supposed to be.  Maybe there was never going to be any other child than the one we have now, and nothing went “wrong”, it just caught up.

I know that sounds dour and sad, but as an autie – someone who is frequently identified as being “disabled” or “broken” – I would be crushed to not be an autie suddenly.  I do not have a disease, I am merely another type of human.

The epilepsy, though.  Any of those beasts should be able to fix the epilepsy.

sixI really had to think about this one for a while because it’s kind of a weird word, “fascinates”.  Dictionary.Com defines the word as “to attract and hold attentively by a unique power, personal charm,unusual nature, or some other special quality; enthrall”.  There are so many things that this could apply to, people included, that narrowing it down is really, really hard.

Finally, I decided that the person that fascinates me the most is my son Daniel.

To me, the idea of fascination is impacted by a sense of never quite being able to understand the fullness of a thing.  Sure, that can be said about any other human, but with Daniel, it’s on a whole new level.

Daniel is both severely epileptic and severely autistic.  The former may aggressively enforce the latter, but, as with so many things about him, we can’t know for certain.  We’re mostly sure why he has both conditions – that waiting long enough for his lungs to develop to deliver him allowed his brain to be more damaged by the oxygen deprivation – but the extent and impact is still mysterious.

Daniel is non-verbal.  He’s only recently gotten to a point where he communicates in anything other than screams and throwing things, but when he finds something he likes, he latches onto it.  He does the same thing over and over again, he loves to spin around, he loves “Blue’s Clues”, and he loves squeezing things that make him happy.

But what really goes on in his head?  What does he actually see?  How is he experiencing his emotions, and why are they so far away from the outside world?  Does he see things when he has seizures?  Is he experiencing time slips or premonitions?  What if his consciousness is just too much for the interface, and he’s actually just fried his IO ports?

I can say it. I still have a fully active “sense-of-humor chakra”.

Everybody knows I have special needs kids, and each one of them has different special needs.  Autism runs in my family like a freight train (and that’s a good thing), plus the youngest has epilepsy.   And maybe because the universe is a weird, strange place, I’m also friends with and related to a number of other people who also have special needs kids.  I’ve heard some people in apparently desolate and remote areas like New York or Chicago claim that the prevalence of “special needs” by any definition is overblown because they don’t know any personally.  (Maybe SN folk are just avoiding them to be funny, which is totally what I would do.)

When we got our diagnosis for Daniel, I went looking for as much information as I could on how to cope with his issues (and even before that, I went on the same journey for Joseph and his autism).  I found reams and reams of wood-pulp dedicated to a bunch of whiny, misinformed, panicky people, all crying in their beer about how their lives were changed irrevocably, how they had to grieve the loss of a “normal child”, blah blah blah.

(I’m not saying all books written on the topic are like that, just most of them.)

Here’s my message to you (and be aware that I’m going to keep stepping on tender little emotions for the remainder of this post):

Oh, get the hell over it.

And, yes, I can say that.  I’m not being a bitch, I’m not being mean.  I’m giving you some seriously passionate and sage advice in order to save your life and the life of your child.

What are you really grieving?

This is the question that I always come back to when I talk with someone who’s still trying to sort out their role as an SN parent.  The answer is not always nice, sometimes it’s pretty damned selfish, but it’s important to dare to answer it honestly.

Some people really are grieving the loss of a “normal child”, but usually this is someone who doesn’t have any other kids and, thus, haven’t yet discovered that there’s no such thing, really, as a “normal child”.  What’s possibly a little worse is when the “loss” is of the ideal of an above-average kid replaced by one with developmental delays or brain damage, and so there’s a double-whammy of grieving not only for a kid with a “normal life” but also one who supports the inflated ego of the parent.

Other people are grieving the loss of their personal freedom.  The dirty little secret of parenting is that after 18 or 20 years (if you’re lucky), we can look forward to the the kids moving out and then we can go back to having wild sexcapade rock-and-roll parties with all kinds of illicit imbibements, or maybe travel unhindered all over the world, or maybe finally be able to Have Nice Things.  With some types of SN kids, that’s not going to be an option.  Some kids who are going to need life-long assistance are brain damaged, some have severe mobility issues, some have random bouts of emotional, physical, or neurological instability, and the first Full-Time Caregiver is the Parent.

The final kind of grieving that I’ve observed is the loss of flexible responsibility.  This one is tricky because it has factors of the previous two elements, but it manifests as a “no one else can do this job but me”.  This is never, ever the case unless you have isolated yourself from the whole world.  There are government assistance programs, there are friends, there are family members, and there are spouses.  And, yes, I include this separately because the most common occurrence of this type of grief immediately isolates the primary partner.  The loss of flexible responsibility means that you can’t bring yourself to trust anyone else to do the job of taking care of your SN kid, and because it comes automatically bundled with a slew of panicky and fear-driven bloatware, you will eventually start doubting your own ability to take care of your SN kid.

But here’s what’s really going on:

There’s a wisdom that says that the universe doesn’t give you anything you can’t handle.  The consensus among SN parents who enjoy a slightly higher level of emotional enlightenment is that their SN kids are there to teach them something remarkable about love, human development, themselves… the list is endless.  I know a kid who is considered low-functioning (though not vegetative), and you can’t sit in the same room with him without understanding irrevocably that there is definitely a greater spiritual world.  It’s inescapable, but it has nothing to do with what he says because, hey, the kid can’t speak.  You might hear his story and feel sorry for him, but that won’t last once you meet him.  There is no room for pity in his world because his love is too great.

The real scoop on what you’re supposed to do with an SN kid is – raise them.  Love them.  Care for them.  Teach them everything you can, and do it at their pace because it’s their experience that’s important, not your expectation of what they should be.  Don’t sweat the small stuff, don’t teach them to freak out by freaking out yourself whenever something happens that could be potentially awful.  Train your closest tribesmen to know how to take care of them if you have to run to the store or leave the country for a couple of weeks.  Make a choice to trust yourself and others to care for them, even if it means having the number for your favorite babysitter on the refrigerator when the kid is thirty years old.

“Normal” parents don’t sit around every single Saturday night, fretting about leaving their kids unattended and oh my god what if something happens while we’re out and blah blah blah – they get a sitter and boogie down like grown-ups.  “Normal” parents don’t avoid all long trips or excursions because of the complications of having to pull over to let their kids pee.  (Okay, I’m using “normal” in the sense of “parents of normal children and also not personally neurotic”.)  Neither should SN parents.  Outside of extreme circumstances, you just have to plan things a little differently.  Timed stops for medication and potty breaks, daily mileage limits, avoiding flashy-light attractions sometimes, keeping the temperature set proper…

Because if you don’t try to make time and room for these things in a child’s life as much as possible, you aren’t an SN parent, you’re raising a cripple.  Kids don’t know that they’re “different” until we tell them they are, and what we tell them about their differences defines their entire life.  Bust your ass to accommodate every challenge so that your kids have the richest experience possible allowable by their needs, and make sure they know it’s “no big deal”.

If their status quo is secretly a remarkable accomplishment, just imagine what they’re going to accomplish when they decide to challenge themselves.

There are many, many things that I can look back on in this past year and curse about.  There are many more things that I can celebrate.  Neither of those conditions impacts the fact that I’ll be goddamned if I’m going to let next year be anything like this year.

You know I’m not much for resolutions.  Why put off until tomorrow what you can do today?  Or, more to the point, stop giving any excuse at all for not accomplishing what you want to do.

Sometime in the past few months, I realized that my focus and drive have kind of fizzled away.  I’ve been put in a state of handling crisis for so long that when I lay down at night and try to visualize the life that I want, more often than I like I come up blank.  A lot of it has to do with Daniel’s epilepsy and never knowing how bad it’s going to be, or when it’s going to change, or if it’s going to change.  What kinds of foods will we be able to buy?  What kinds of environments can we safely visit?  I had plans to do some traveling after the first of the year, but I realized that I can’t afford to do that, not when he’s like this.  Yes, Joe is wonderful to keep him on weekends, but there’s always that “what if” in the back of my head.

That’s the part that sucks about Lennox-Gastaut Syndrome.  Just when you think you’ve got it, just when it’s under control and handled and you’ve gotten used to it – it changes.

And so many of my nefarious plans must be put to the back-burner or put to the side, and I know there’s a good reason for that.  There’s a positive outcome to it, and I know there’s a reward at the end, but I’m not one that is easily given to waiting.  (That is, after all, why I knit.)

This past year, I dabbled in a relationship that showed me that I still have a problem telling the difference between what a person is and what a person could be.  Apparently, some people want to be greater than they are, want to be stronger, and that puts them in a state to be fearful and abusive.  It’s not their malicious intent to be so, but that’s what ends up happening, and I am not obligated to indulge that.  Ah, well… there were good times, at least.

I also dabbled in college, and fell into a scam.  (Well, I said that twice… “college” and “scam” are becoming the same thing.)  The error was not in wanting or pursuing the degree, the error was in believing that they really do want single, home-bound moms to get a great education, and that they’ll do anything in their power to make that happen.  Well, that part is true, except that the “anything” in question was to neglect to mention that online students that are not directly enrolled in real-world campuses are not eligible for academic scholarships.  And you know how allergic I am to debt…

But, now I’ve had a taste of it, and it won’t leave my mouth.  The thing is, that puts me back where I have been all along, asking myself what I want to study?  I’ll incur some debt – that can’t be avoided – so it had better be worth it.  Business administration?  Project management?  Physics?  Medicine?  (Oh god, not medicine…)  Marketing?  (Please no…)  It’s a very tough decision, but I need to do something soon.  (Partially, this is because I have no desire to start making student loan payments.  I need to enroll in a proper college very soon.)

I moved twice this year.  I haven’t done that in a really, really long time – not since 2001.  Of course, 2000 was worse… In 2000, I lived in… *counts on fingers*… seven different places?  Yeah… 2001 was only… three, I think.  Yeah.  I’m sure I’m not first to say, “FUCK THAT,” but I am, in this moment, the most emphatic.  I’m sick of moving.  I want to outlive my landlord here, seriously.  (Well, that’s how I feel right now.  It will ultimately depend on how he feels about having a TARDIS in the backyard.)

Oh, and THIS was the year that I finally came to terms with my own autism.  That was a fun time.  It’s a lot of back-and-forth for me, wondering how much I’m supposed to divulge, whether or not I’m supposed to say anything to my employer, how much I’m supposed to say, whether or not to explain the intricacies… does it matter, really?  In the end, I’m the only one that can do anything to control it (although fine-tuning the communication would help).  I still don’t know, really, what it means for me in the long run.  I don’t want to be labeled as something “undesirable” (especially not in this economy), but I don’t know if it’s going to get worse with age.  It seems to for some people, but there haven’t been any studies on that that I’ve been able to find.

There were amazing moments… Velic finding peace and going gracefully to the Other Side… Getting in touch with my oldest daughter… meeting Mike and finding a very comfortable, no-pressure relationship… Joe premiering his first movie… moving closer to family… there were so many fantastic moments, it’s hard to quantify them all.

But, that’s not really what this musing is about.  What I really want to have in my hand, in my head, is a solid image of what I want the future to look like.  You cannot create that which you cannot conceive, and all the stress and worry has greatly diminished my capacity to see any future beyond the next few days, it seems.  Perhaps the exercise over these next twelve days will bring some clarity.

Gods know I need it.

Really, this post is just an excuse to try out the new WordPress installation.  You know I love to try this stuff out on the little blog before I put it out to the real world…

That, and there are changes happening.  Again.  A lot.

As you may have already heard, we moved again.  Yes, the last time was only in February of this year.  Well, we kinda went from the frying pan into the fire with Daniel’s seizures.  We thought the main problem at the old house was heavy metal poisoning, and that was a problem, but… we were introduced to a whole NEW problem when we got to the new apartment.  The seizures roughly reduced, kind of, mostly due to a difference in the medication, but not significantly.  Our lowest count was around five a day, but normally, it was closer to twelve.  That’s twelve separate episodes, with each episode having anywhere from three to ten seizures each.

Around the middle of November, I took Daniel to the doctor for an emergency blood draw to make sure that the new medication we’d added in wasn’t creating the daily spontaneous nose-bleeds (I’m still not convinced that it wasn’t a factor, but they insist that it was fine).  Instead of heading straight home, I went over to Debbie’s house to drop off a new shelf for her (she really needed a little something right next to the stove), and on a whim, I drove around her neighborhood to see if there were any houses for rent.

Okay… it wasn’t totally on a whim.  It was fueled by the observation yet again that Daniel had few or no seizures when we were out and about like that.  Hypothesis: the apartment was, in some way, toxic.  Repeated exploration of this hypothesis has supported the potential conclusion, and frankly, my nerves couldn’t handle the waiting to get someone to sign off on it.  Every time I went outside to the porch and saw the 28 electrical lines running across the field next to the house, at least ten of which were specifically high-tension wires, I got a twist of fear and anxiety in my gut.

Well, I found a house, and literally the next day, I signed the lease, and we were completely moved in by Thanksgiving.  It’s a three-bedroom, one-bath in Irving, in the Art District, with a one-car garage, a drive-way, a huge backyard… it’s actually a little smaller than the apartment, but the garage totally makes up for it.  And the backyard.  It has a massive cottonwood tree that shades the entire lot – even the already-installed clothes lines.  I am definitely happy with it.

The floors are stone, which is a good thing because it means that there is less dander and no chemical break-down to deal with.  The furnace, water heater, and stove all run on natural gas.  The electrical system was updated recently to the most efficient model possible, and the insulation and drywall have all been replaced in the last couple of years.  The rent is a little more than I was paying before, but I suspect that my utilities will be cumulatively lower.

And the best part?  We have seen an immediate and significant reduction in seizures.  We’re talking only two or three a day.  There was one day that we had twelve, in fairness, but that was the day after the MRI (with sedation).  If we’re actively demonstrating that there was a direct correlation between an intense electromagnetic field and seizures, then it makes sense that we’d have to deal with that kind of fallout.  (In fairness, it could also have been the sedation and the fact that he didn’t really want to eat for a full day afterward, but that hasn’t produced as many seizures that I’ve observed.)

With this change, other things are starting to bubble to the surface.  Old yearnings are coming up, stories are starting to form… but at the same time, there’s almost a more fundamental drive coming forth.  Some time ago, I had a dream that I moved into a new house.  This might’ve been a portent for what we just experienced, but I got more of the impression that it was a symbolic move into a new mode of thinking.  I was getting rid of things that I’d inherited but couldn’t use, transitioning into a collection of things that had purpose and were beautiful – and were all of my choosing.  I wasn’t “saddled” with anything, it was completely me exercising my options.

Now, I want to make my real life match that.  I’ve been going through boxes and getting rid of things I don’t want or need.  I’m not being indiscriminate, but I am being practical.  There are all of these glasses and knick-knacks and dust collectors… they will be packed away in permanent boxes so that nothing can happen to them but they won’t get under foot.  Books that haven’t been read in more than three years are being carted off to Half-Price Books.  Boxes of things that belong to other people are being prepped and put aside.

I’m tired of not being able to move freely in my own space.  There will be much rearranging over the course of the next few months as everything decides where it wants to live.  I am preparing my home for the act of creation, for a phase of creativity, and I’m looking forward to what comes out of it.