February 6, 2012

Simple gifts and sleepless nights

Monday is upon us, and with it a new post at Support for Special Needs. We had a moment this weekend, a simple and lovely moment before Schuyler's monster showed up and wreaked havoc on her. I am hopeful that the moment will live in her memory longer than the rest. I think it will.

Addendum, written on Sunday night, after everyone went to bed)

I've got more to say, I guess. My apologies for the tone being pretty much the polar opposite of my SfSN post. It happens.

A few hours after the incident I described above took place on Saturday, Schuyler had what we believe was another complex partial seizure. Not a bad one, and she was distracted by a case of the hiccups and a case of the giggles shortly thereafter. Do seizures give you the hiccups? Or the giggles, for that matter? Fuck if I know, but at least she bounced back from the seizure.

But then on Sunday, she had another, and it was bad. Bad like she hasn't had in a long time. The details would embarrass Schuyler, but it shook all of us up pretty thoroughly. It happened when she was by herself in the bathroom at a restaurant, too, and if Julie hadn't been there to go in and check on her, I don't know how it would have gone down. So does this mean that Schuyler, a twelve-year-old girl with a fierce independent streak, can't go to the bathroom in public by herself anymore? Maybe it does. And that kills us.

Early this evening, Schuyler's rough day finally ended in hysterical tears over what was actually an extremely minor situation. I think she just ran out of Schuylerness and needed to cry some "I fucking hate my monster" tears. As for me, my own personal definition of heartbreak has been updated now.

I'm going to be blunt now. When I go online, I read a great deal about accepting and even celebrating the neurological and physical tweaks that make kids like Schuyler different, and for the persons with disabilities and their families for whom that approach feels appropriate, I say good for them. Really, I do. I'm not in the position where I think I should tell other people how to face disability, either their own or that of the ones they love, and I would hope that I could expect the same in return, although I am all too aware that I can't, not always.

But let me make something clear, as if I haven't already. Schuyler's polymicrogyria makes her unique, but it also robs her of much of the life that she wants to live. It doesn't make her a special snowflake. It takes away her speech and leaves her working like mad just to make herself understood, and infinitely more distressing for her, to understand that world for herself. In a school full of preteen girls whose social existence revolves around communication and a growing maturity that she does not yet have, Schuyler is at a remarkable disadvantage, and she knows it. God, does she know it. "I want to talk like everyone else," she said again over the weekend, this time to Julie. She has a developmental disability, but she gets it, with growing clarity.

Schuyler probably wouldn't understand the nuances and complexities of the concept of neurodiversity, but I feel relatively certain that she would reject it entirely if she could. Schuyler doesn't want to celebrate her differences. She wants them to fucking get out of her way. And now, as always, my chief frustration as her father is that I am powerless to give her that. All I can contribute to the fight against her monster is to write about it, and all that really does is validate the fears and the anxieties of parents with kids like her, and to clarify things a bit for everyone else.

But for Schuyler, though? All I can do is be there to clean her up and dry her tears, and to tell her that yeah, I understand that it sucks, but there's nothing that can be done to change it so she just has to work harder to make her way in this grand rough world. And that's a shitty, stupid answer, but on this particular multiple choice quiz, there's the truth, and there's a bunch of lies, and while some of those lies might be comforting and cheerful, they are still lies, and I simply won't tell them to her.

What I really want her to know is that I would step in front of a train if it meant that she could live the rest of her life without her monster. I would do so without hesitation, and if they looked on my shattered face afterwards, they might even find a smile. But that's not an option. And on nights like tonight, that is hard to bear.

Post-Ictal Puppy Bowl party


Niksmom said...

Rob, I'm so sorry. And I get it. Oh, God, I get it. There are days I wish I could make it all go away. As my son gets older and the challenges he faces become greater and the gaps between him and his peers widens into a bottomless chasm? Yes, I would give anything.

Sending you my good thoughts and hopes that someone in a position to do something to help Schuyler gain control over her seizures finally does just that.

Diane P said...

Rob, I so understand...my grandson has some issues that make him very "different". Nothing as serious as Schuyler's is...but my heart breaks when I see him struggling to keep up and I want to just kill anyone and everyone who hurts him or makes him feel inadequate. There is nothing I can do but love him and celebrate the small accomplishments. I am praying for Schuyler's emotional well being.

Helena Sue said...

Reading this makes my heart break- for you, for her, for Julie... I'm sorry. You'll be in my thoughts. <3

krlr said...

I don't know if I'm sniffling over here because of that girl, which in just a few sentences caused me to let down my guard a smidge about the mean girls of our future, presumably to be crushed later, or getting a glimpse of the future. Different set of issues, but that *awareness* is already here, when mommy doesn't understand what she wants.

Catherine said...

I have read a number of blogs and articles where those who have conditions that make them very different and allow them to be in the disabled, handicapped,special needs, differently abled categories emphatically state that they would not want to be "cured" of their conditions. I've read parents stating the same. They want the needs that arise from such conditions to be addressed by society, for accommodations to be made, and for full acceptance by all.

It is a powerful statement, IMO. It is making the decision that the condition, symptoms, situation is so part of the person, and that the person is going to forge forward in life as much as possible without waiting for things to change. The thing that is immediately changeable is society's way of handling and treating them, condition and all.

Those I know who feel this way do not think about their condition as "how terrible', "how they hate", "how they wish it gone", or if they do, do not focus on those aspects at all, but look at is as part of what is dealt to them as members of humanity and that all should deal with it, not just those who personally are in those situations.

That is a big part of what disability advocates are pushing militantly. Have seizures? Yeah, well, yes, it would be nice if no one had seizures, but some of us do, so we all need to learn to deal with people who have seizures instead of waiting for the cure for them
Speech impaired? Everyone should learn to deal with speech devices on the market,and improvements made in such devices, with an emphasis in getting those dealing with this issue into the mainstream of society rather than just trying to find the cure for the many causes of this situation.

When one's condition is mentally and/or physically such that another person's care is fully needed, then, even as the causes for these conditions are researched, things need to be in place to incorporate such individuals fully into society. Such individuals need full time aides on a rotational basis and that should be provided, rather having them warehoused while researchers look for the gene or germ that caused this condition or a way to regenerate it.

It's a movement to address the now.

I would vent and cry, too, and wish that the condition were not there. That there is no monster, but at the same time, address the fact that it is there, and that certain things need to be done so that such a person can participate in life and be as self subsiding as possible. THey are not handicapped so much as needing accommodations other than what most of us need.

Billie said...

Oh geez. This has me sobbing hysterically. I don't know how I am going to do it...

I feel you.

Sometimes it's exhausting to look for the bright side. Impossible even.

Jackie said...

When I saw your tweet yesterday about the "bad one" my heart sank. When I read this today (at work, not smart) tears are filling my eyes.

I have nothing prolific to add, other than I'm sending my best your way, and hope for a better day today.

Unknown said...

Weird facts I know from parenting a child with disabilities...(She is missing her Corpus Collosum)

Yes, Seizures can give you hiccups and giggle fits....some seizures are just those symptoms....

The brain is a bizarre organism.

carlajmb said...

beautifully, soul-wrenchingly written - will be praying for help for the seizures that are robbing Schuyler of so much - she has the best daddy in the world

deb said...

I really wish I didn't know what "post-ictal" meant...but I do. First hand. I ache for your guys.


Alison said...

I'm so, so sorry. She doesn't deserve any of this, and it's completely unfair.

Kathy W. said...

I was telling my husband the mall story & started to cry. (For the record, so did he.) Then I told him the rest of the story, and the f*cking unfairness of it became overwhelming. Anyway, I hope Schuyler has a much better week.

(sent you a grasping-at-straws email, too.)

Alex said...

I'm so sorry. Seizures stink and Schuyler doesn't deserve any of this.

gerry said...

Rob, the juxtaposition of this post with your one at SfSN brings to mind metaphors of rollercoasters, pedulums, or bipolarhood. But those are inadequate to descibe how those two stories tear at each other.

I do not post on blogs, and I do not swear. But after reading these last 2 posts of yours, I registered on this blog site to say damn.

Hang in there.

*Tasha* said...

Yeah. It sucks, it really does- being nonverbal. (I am.) But thank our lucky stars we live in a society where typing on a phone or a device is accepted-- as recently as 20 years ago, it would still have been "weird." Now it's just slightly weird...

wkmtca said...

have you thought about getting her a seizure dog to alert her/you to one coming and being with her during/after?

Miz Kizzle said...

Carrying on in the face of anguish and fear for the future is much tougher than throwing yourself in front of a train. After all, the train thing only lasts a few seconds.
Seizure dog sounds like a good idea. Having a dog companion at school might help S. make friends.

Christy said...

Just stumbled across your blog and reading your stories. I have a son with multiple developmental delays and myoclonic absence seizures. Yes, it can send him into "hysterics" sometimes. At times, he has had types of seizures where he just can't seem to stop repeating the same thing over and over again like his brain is stuck like a broken record. It is difficult and I have those days too where I just don't want to find the positive in his disabilities. God bless you and your daughter.

helen-louise said...

I can see the argument from both sides. I'm very much in favour of the social model of disability. I do feel that an awful lot of what disables me in everyday life is other people's perceptions, or lack of societal adjustments. It's been even worse since I started using a wheelchair to get around (which we're still hoping is temporary) - I keep finding myself having to take ridiculously long routes around the city because there aren't enough dropped kerbs for me to cross the road in obvious places, unable to get into rooms because the doors aren't wide enough, and getting stranded outside my university because the power-assisted door for disabled students has been broken for the past 5 weeks. That's definitely me being disabled by society, rather than by my illness.

However, I also feel frustrated with some of my medical diagnoses. Especially depression - I wouldn't be who I am today if I hadn't been chronically depressed for more than half my life - but I'm sick of it! I have been fortunate enough to have received excellent treatment, both drug and talk therapy-based, but I've lost years of my life which I won't get back. Here I am, at the age of 35, completing the degree which I started when I was 21. That's an awful lot of time to have lost. And of course I can't help comparing myself to other people my age who didn't have the health problems I've had, and are now considerably farther through a career than I'll ever get.

So I think the best approach is somewhere in the middle. Celebrate the differences that are worth celebrating. (If, for example, a person's different thinking style makes them more creative). Fight the differences that leave a person impaired even with reasonable adjustments in place. And above all, recognise the right of the disabled person to decide for themselves whether their differences are disabling or empowering.

Sometimes, the same difference is both, on different days.

mooserbeans said...

Oh damn! This just sucks on so many levels. I see your point. Not only is Schuyler's condition physically draining and dangerous, it keeps her from doing what she wants to do. No matter how hard she works or how accepted she is that isn't going to change. She knows that. My heart breaks for her. You are honest in a way so few people have the courage to be. Just because you are honest does not mean you are negative or don't love your child. I can't think of a father who loves his kid more. Your honesty and strength will continue to help her grow into a strong young woman. You are such a good father.

FeistyScribe said...

Something to consider: a seizure alert/response service dog.

I know my SDs have allowed me to retain my independence.

Poke me if I can help -- as a SD trainer, I've got some connections that could come in handy if you're interested in investigating this avenue.

(Meanwhile -- good thoughts and encouragement to you all. Complex Partial Seizures suck. I know all too well. :( )

BLOOM - Parenting Kids With Disabilities said...

I was profoundly moved by both of your posts.

Your words about the seizures reminded me of when my son was in hospital after major hip/knee surgery (had to have the hip surgery twice in 2 weeks because the hardware pulled out of his bone the first time, pulling bone with it).

They couldn't get his pain under control afterwards -- he was in a body cast for 6 weeks, went on a hunger strike and then gruelling months of rehab -- and being in the hospital listening to the other kids cry and groan in pain.

And I remember thinking that saying about 'what doesn't kill you makes you stronger' was the biggest load of BS.

There simply isn't any good that comes out of physical suffering and the powerlessness and indignities it subjects our kids to.

Hugs to you and Schuyler!

Mavis Cruet said...

Hi, I am new to blogging but following you as I have an 11 month old with a whole host of problems but no actual diagnosis. While I am trying to be positive about what his future might hold, it is refreshing to read honest feelings (sad, frightening, angry, happy etc) from other parents. I find it hard to share the dark side of my honest feelings with family or parents of NT children... best wishes to you all.

Jonquil said...

"I understand that it sucks, but there's nothing that can be done to change it "

Yes. I have a son who has a chronic pain disorder and a chronic anxiety disorder. He's a legal adult now, and he's struggling to make up all the time he missed from school. I have too many conversations with him where my part is "I know. It sucks. I'm really sorry."

Because *fuck* saying that it's just another way of being. My son is in pain, both emotional and physical, and all I can do is tell him I love him and try to find ways to help him move forward. His friends are four years ahead of him in education, and there's no denying that.

Parenthood is hard.