Peeking into another world

I belong to several parent communities, on Facebook as well as LJ and they are all for parents of children with special needs. Some focus on developmental delays, others on mental issues and all of them welcome ANY parents of ANY child to join. The communities primarily exist for the parents to exchange information, give advice and vent or cry to other parents who understand the difference in parenting a child with special needs.

I joined those communities long before Lil Miss was born because I have TWO sons who are on the Autism spectrum. I have been parenting them for a long time now and most of what I have learned and accomplished was on my own, without the internet. I think it is AWESOME to have the internet available now for parents of special needs kids. Parenting a child with special needs can be scary and lonely and painful too.

I remember how scared and alone I felt in my early days. I *was* alone. I didn’t have any groups, real life or online, to go to with my questions or fears. I only had a few knowledgeable professionals I’d see on occasion who could answer my medical and developmental questions. But they couldn’t help me know how to navigate being a parent. When I was raising my boys? There was almost no one to ask for help.

These communities are what I needed back then, what I could have really used when times were dark and I wasn’t sure whether I was doing anything right. Because these communities are created for exactly those times. Members go and ask questions, post doubts, and check for clarifications. I had no place like that to go when I wanted to ask for help. So that’s why I’m in these communities. Because whenever I see a parent crying or asking for help, I want to give them what I needed back then. Whether its real life advice, technical questions (to help clarify confusing situations) or just commiseration, I never hesitate to join in when someone seems like they need help. Or commiseration. There’s a lot of commiseration. A LOT.

Let me explain something about commiseration. When you are the parent of a special needs child, one recurring issue you wrestle with is whether you’re “allowed” to be frustrated or afraid or angry about anything having to do with your child. Parents in general get a lot of guilt trips heaped on them by society but parents of special needs children get an extra helping. People are always telling us cute little homilies that are supposed to inspire us or something, I was never sure but usually all the do is bring us down. Because those cute little homilies (much like the advice we get on a CONSTANT basis) usually make it clear the person giving them has absolutely no clue as to what we are going through. Its much like if you wanted to give a “get well soon!” card to a person dying of cancer. You think that’s sweet but to them, it underscores that you really do not understand the dire reality of their situation. So we tend to be quiet about our struggles and shrug them off in mixed company. If we aren’t getting pithy little saying to lift our spirits (we’ve heard them ALL) then we’re being told that we’re doing everything all wrong, that our children are just horrible little brats who need a good spanking. Or that we’re too harsh on our darling children who only act up because they need attention. Or we’re just trying to avoid being REAL parents (whatever that means) because there’s no such thing as (whatever diagnosis you let them know your child has). We have probably heard every blame-shift saying imaginable. So we tend to shy away from other non-parents and grow thicker skin. But that’s hard when you are lonely. Parents are like anyone else; they need companionship. They need socializing too. But for many of us, socializing is a difficult chimera. Some parents of special needs children can actually leave their child in carefully constructed circumstances but some cannot even do that. For some parents, online is the ONLY socializing they get for long stretches of time. These communities serve us in so many ways. They are precious.

In all my years of being online, I’ve been in many communities for different reasons but I have ended up staying only in the special needs parenting communities. Because in no other community have I ever known a group of people more loving, supportive and understanding than parents of special needs children.  I have made lifelong friends and had some really amazing times with these people – people I have never met in real life and probably never will. Because we share some experiences that NO ONE can really understand without having been there – so we don’t judge. Ever.

We don’t ever tell someone they are doing something “wrong” or “bad” with their children. Never. We believe that “support” means lifting someone up. Even when we feel someone is making questionable choices, we discuss them lovingly, give advice gently and are always ready to step back and accept that we may be the ones who are wrong. Because when you parent a child with special needs, you find out very quickly that no one can possibly really know someone elses situation. So we are there for each other, even when someone is losing their mind, screaming, ranting, venting, crying maybe even shaking their fists in rage at the universe for their troubles.

We don’t care.

We hold them up anyway and wait for the end of the tears. Because we understand that sometimes its all you can do.

We recognize every parent as being fallible and human.

We know that because you are in this community, you care. You love your child, you want to do right by them and you are ready to be helped by others. You’re humble. You’re accepting. You’re loving.

Because if you can’t be those things, you can’t parent a child with special needs. Its part of the territory and we know it.

So if you see me make comments occasionally that seem callous or cold and clinical… if you see me tell someone its okay that they freaked out on their child… if you see me admit to losing my shit or raging against the universe too.. understand, this is who we are. Its how we manage to do what we do day after day, year after year and still keep hope alive. It’s not negativity, it’s honesty and acceptance. Acceptance of what we are dealing with and who we are.

We laugh whenever we can, bite our tongue when we have to and pick ourselves up off the floor more times than you can possibly imagine. Trust me, its not the same as parenting a “normal” child. It’s really not. It’s hard in many ways. It’s joyful in many ways. But it’s our unique journey and we navigate it best for us. If you see a glimpse of it, watch us for a few seconds, you might not understand what we are about.

Just trust us.

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Derma-what?

Lowering my stress is a very big deal, because I am an unfortunate individual: I have three conditions which are heavily influenced by stress. The first is my dermatillomania, the second is my OCD (more on that in a minute) and the third is my meningeal herpes (which I’ve described to a small extent on my bio page)

Stress causes what I call “flare-ups”. Frankly I’ve never really liked that word when it comes to conditions not seen by the naked eye because my first understanding of the phrase has it cemented in my mind that a flare-up is something that burns across your body increasing in intensity like, well like fire. Kid logic, yanno?  Despite that visual association and all its drama, there really isn’t a better word for it so I use “flare-up”. Whenever I’m talking about my meningeal herpes, saying “I am having a flare-up” makes me imagine a whole opera inside my body. See, first there’s all the little herpes virii lining my spinal column and surrounding my meninges like little pudgy trees, waving in the fluid. They suddenly get flooded with …stress hormones (its hormones, right? not neurotransmitter effluvia or something? hell I’m not a virologist, i’ve just yelled at them) and they all say ‘whoopee! party time!” and they start waving about, getting taller and more… tree-like. Maybe they grow extra appendages, maybe they just grow bigger limbs… in any case, the stress… chemicals…. are flooding the pathways and so the herpes know that the immune police won’t be able to rush over like they usually do or maybe they just move really slow, or maybe the stress effluvia (isn’t that a cool-sounding word? for such a nasty idea?) gums up their little immunizing laser beams, but in any case, the herpes know that when the stress goop flows, the party is ON ! So there you are, with a bunch of fluid that’s supposed to maintain a certain level of pressure or maybe the Ph has to be just right or something but the  herpes is making with the disco times and starts taking up more and more space, and now you have the whole system out of whack and the immune police can’t fit their little waahmbulances through the pathways and the herpes know its a Woodstock in my body. That’s what I imagine when I say I am having a “flare-up”. It doesn’t sound as cool as “herpes hippy party” or “viral boink-fest” but I suppose its probably more indicative of the seriousness of the situation. SO I say “flare-up”

Anyway, the point of all that rambling was to give an impression of how stress can cause severe pain in my back and brain. Once it starts, my prophylactic meds (Yes! they really are supposed to prevent little herpes babies! or extra herpes limbs? or mutant herpes? I’m not sure, but they are supposed to suppress…something about growth) won’t really make it go away, they only make it quit getting worse. The virii have to finish their regenerative cycle or something (which as I have learned can go anywhere from two weeks to two months? Egad) so I’m left with just pain meds. Which I just took twenty minutes ago, can you tell? But the point is, the less stress I have, the less I have to deal with in terms of the meningeal herpes clogging up my spine and river-dancing on my brain shell.

I haven’t said anything about the OCD, but I’m going to… right now.

I’ve been off my anti-depressants for about two weeks now. I need to get back on them. This is an issue with the doctors office but I went off of them because I didn’t have the money to get them and I wanted to see the difference without them. I’m under no illusion that I don’t need them, I most certainly do, but ever since returning from the cruise, I’ve really wanted to get more of a handle on my OCD. Up until I started on the anti-depressants (about two years?) I’ve spent my life dealing with OCD mostly by giving into it in the least harmful ways possible. I know I do damaging things because of it but I tend to just brush it off because, hey, I don’t have the dreaded hand-washing version, right? I don’t have ritualistic behaviors, right? So I count my lucky stars and try to downplay the whole thing. My OCD isn’t even really in my cleaning. Cleaning like a maniac is just one of the few behaviors I have that help the URGE go away and make the obsessive thoughts recede for a while. That’s the interesting thing, OCD stands for “obsessive-compulsive disorder” and most of the public is familiar with the “c” part of it – the compulsion – but that’s not really my primary problem. No, my OCD is primarily in my obsessive thoughts. Compulsions I never worried about much because mine are small and not very damaging. Or at least they USED to be not very damaging. (More on that in a minute) My OCD was “accent on the ‘oh'”

If you’re curious, you can read my entry about postpartum depression to get a better idea of what obsessive thinking is like. It really is like it sounds (obsessive) but the part most people aren’t aware of is the TYPE of thoughts that circle round and round the OCDer’s brain. Some are no big deal (earworm? ever get one? annoying, right? Yeah try having FOUR songs taking turns smashing lines and verses so fast you can’t figure out which songs are playing for a couple of hours) and most of them don’t require any kind of action on my part, they just keep. going. on. forever.

My obsessive thoughts are mostly of the completely irrational scary kinds. The kind that are so irrational and scary that even while my brain won’t stop playing them over and over, I don’t get too uptight about it because I know they aren’t “real”. The problem with the obsessive thoughts is that they just aren’t very convenient. I need to use my brain quite often and when I’m fully engaged, everything is peachy. I have learned throughout my life to keep a tight rein on my thoughts. I learned to meditate and empty my mind when I was 12. It is a handy skill to have. But doing so requires a certain kind of environment and/or a certain kind of focus that I don’t always have at my disposal.

Recently I found out it might not be considered an OCD at all. What I have is called dermatillomania. Which is a fun fancy way of saying when I’m stressed I gouge my skin. Mostly its the skin on my face but over the years this penchant has moved around my body and there are still times I’ll gouge other parts of my skin if I feel its “necessary” Finding out there’s even a name for my condition has been relieving. There’s something about having a label to put on your difficulty that makes you feel like you might be able to control it somehow. That’s kind of misleading actually because without medication, I cannot control it. I can maintain it and damp it down sometimes but I cannot control it. I can’t decide when and how I will or will not engage in my obsession any more than I can decide when and how I will breathe. I can hold it in for a while, but I can’t do that indefinitely. I can focus really hard and maneuver it in specific directions sometimes but I can’t have that kind of focusing ability at the ready 24/7. No its really a matter of working around it. But having a label and some basic medical explanation can help in some ways but its a facade really.

Mostly, my dermatillomania seems to be of a type that is more akin to drug addiction than actual OCD. Which is weird in that I always assumed it WAS my OCD. Realistically, my OCD is comprised primarily of my obsessive thoughts rather than any special behaviors though. Because when I get those obsessions, the dermatillomania doesn’t have any connection at all to them. The thoughts don’t make the dermatillomania rise up nor does engaging in the dermatillomania erase or banish the obsessive thoughts. So in a sense, they aren’t really related. And neither are either of them related to the meningeal herpes.

Except they are all heavily affected by stress.

So here I am with three conditions that have the capacity to make my daily life a living hell with mental, emotional and physical pain: obsessive thoughts, dermatillomania and meningeal herpes. Stress has a very profound effect on all three but in entirely different ways.

Stress lowers my mental acuity and banking my obsessive thoughts gets harder and harder the more stressed I am. I can easily end up in a panic attack just from not being able to make my brain shut up. Of course, panic attacks, as uncomfortable as they are, aren’t the end of the world nor do they do any real damage, but the real problem with obsessive thinking really is that it isn’t just obsessive, its intrusive and dominating. Once my brain gets started on a tack, its very very hard to get much else done. One of my favorite tactics to deal with obsessive thoughts is to engage in something that is either attention-grabbing or unpredictable… preferably both. One of the best defenses? Talking to other people about what is going on with them. Its better than reading or watching videos. In both reading and video there are formulas and tropes that get used and become less helpful in the quest to distract my brain from spiralling into near-madness. Talking with another actual human being, however, does ‘t follow formula or tropes or memes. This is why I sometimes get seized with the desperate urge to talk to someone and have them do all the talking. I need this sometimes to distract and reorient my brain. It works remarkably well. This is also part of the reason I love children; children do not follow formulas of any kind. They may be easy to understand (I said MAY) but they definitely do not follow conventions. Children don’t even KNOW conventions. That’s the beauty of it. So when I seem creepy in my enthusiastic desire to converse and play with children, its really just a point wherein their inane chatter and bizarre social interactions are soothing to my obsessed brain patterns. I cannot maintain obsessive thoughts while I am around children.

Stress also increases my anxiety and mishearing because stress slows neurological transmissions. I start dissociation probably as natural slowing of my thought processes but this is also disorienting and scary – it feels like I am not a part of my surroundings because I can’t understand what is being said to me and I can’t figure it out fast enough. When you “hear” things a half-second after everyone else does, its easy to feel alienated from your party. This starts anxiety and as a result, the dermatillomania pops up. I’m not sure if the dermatillomania is some kind of subconscious urge to wrest control of my body (I kind of doubt it) or if its really just a misfiring in my brain that I usually can keep at bay. Anxiety and tension makes it emerge though, this I know. And I don’t mean anxiety of the kind that brings panic attacks, I mean a general feeling of tension and well stress. When I get angry  or frustrated with no discernable solution or target, I start in on the skin. When I am overly worried about something and I have no idea how things will go, I start touching my skin. When I have a stray thought of something fearful? no. When I’m scared? no. Just when I’m ill-at-ease.

I wish I could say what makes it lessen. So far, the only thing that’s helped is less coffee and anti-depressants. The meds don’t make it go away completely but they do lessen the urge and make it less frequent.

We all know stress lowers the immune system response so its pretty obvious that stress would greatly affect the herpes. I take meds for that but nothings perfect, you know?

So there you are; three conditions that are affected by stress and sadly can create stress which makes it all worse. Yeah you can see why its become my primary objective in life right now to be as stress-free as possible.

So far so good.

We Interrupt This Awesome Train of Thought

I’ma be honest with ya’ll; I was all FIRED up to continue my writing on the previous topic.

Then I came home in pain and exhausted. So I took a pill and cuddled with Lil Miss for a nap.

An hour or so later I stumble out of the bed because I’m only dozing, not sleeping and I really want to clear my head and maybe at least get some stuff started. See I have class websites I have to check too so its gonna be a packed night if I want to write. And I do, with a burning passion (well what’s left of my passion burning through my pain pill haze)

 

But then Lil Miss got up and after about an hour of trying to fend of her natural grumpies, it became obvious that she’s seriously cycling UP.

In some ways that really fun because she’s really charming and fun when she’s UP. In other ways, not so much because all that charm? Never shuts off. There’s no respite from the constant chatter and questions and topic-flitting. It kind of takes all my attention and energy.

So we’ve been trying to keep her low-key and reminding her that mommy is not feeling 100% please stop asking her to go downstairs. That’s kind of tiring too.

 

And now its almost bedtime and I’m still feeling tired and  worn out. But I still have my class websites to look at and my schedule to copy and oh whatever hellacious else I need to square away before bedtime because, hey-HO! I’ve got two more classes to start tomorrow except I can’t because I’m going to the doctor to get my stitches out and have a follow-up exam so oh yeah I also have to send emails to my new teachers I haven’t met yet and let them know I won’t be there tomorrow but I got the material blah blah blah

 

oy I’m tired just typing all that out.

 

So I’m just sayin’… the continuation probably ain’t happening tonight.

BUT it is one of my primary goals of 2013 to write consistently in this blog. Like every other night. I’m hoping to be there by Feb.

Please excuse us. We are having momentary technical difficulties and will return you to our regularly schedule hot sizzling story as soon as possible. Like tomorrow.

 

Thank you.

a little bit of catch-up (because some of you aren’t on LiveJournal)

The basic facts:

  1. I have this genetic condition. So I’m 4’7″ yes you read that right FOUR FOOT SEVEN INCHES. I’m 46 yrs old as of this writing.
  2. I have given birth four times
  3. three of the four were necessary c-secs
  4. I also suffer from a fun form of Herpes in my spinal fluid. That would be not such a big deal except what they don’t mention is that sometimes it can progress to a near-fatal form which I actually did have once.

TONIGHT WE ATTEMPT TO DISCUSS FACT NUMBER ONE

Growing up with a genetic condition that makes you look like alien from the planet bizarro-dwarfland (my features are the opposite of formal Dwarfism: short trunk, normal limbs) means every time a medical person even gets near me I am subject to a barrage of questions all designed to satisfy their curiosity. Being as I inherited this condition from my father who is hale and hearty as we speak, it clearly poses little, if any, medical problems. Sure there’s practical problems galore (most of which have to do with just being super-short) but oddly enough, they never ask me about the practical problems of being a walking freakshow OR being super-short. Some people like to make jokes which I generally ignore or grit my teeth and bear. Not because I’m so super-sensitive about being small but because trust me, by the time I was 13 I’d heard it ALL. Being 46, now I’ve heard it all at least ten times.

But hey, why not share? First, the secular questions in order of popularity:

  1. “what’s WRONG with you?”
  2. “what HAPPENED to you?”
  3. “YOU’RE SHORT!”
  4. “are you a midget?”
  5. “wow, I really dig short women”

The creativity alone just knocks my socks off, right? Now you know why I have a FABULOUS eye-roll.

Now the medical questions:

  1. “have you ever been screened for scoliosis?”
  2. “turn around and touch your toes”
  3. “can you move your neck?”
  4. “does it hurt when you move?”
  5. “so have you ever heard of Klippel-Feil?”

Now, you may think all of those things are innocuous. But how innocuous would you feel if you were in an urgent-care clinic trying to get an x-ray of your HAND because you thought your wrist was broken and before the tech will set up the x-ray machine some PA starts barking at you to touch your toes and let him thump on your spine? Yeah, not so much. Especially when you’re in your 20s and have been getting spinal examinations since you were born. Not so innocuous. But people who have physical deformities develop a certain lassez-faire about being interrogated by medical personnel. We also develop a certain aloofness about strangers accosting us with dopey questions. At least strangers are trying, in a very inept and awkward way, to gain some understanding (well except for those Romeos who try to win my heart by telling me they love short women but we’ll get to that later) we can forgive that; everyone has curiosity and how DO you go about gaining understanding of something so incredibly outside of your world without sounding dopey? We understand. We may not always be in the mood to tolerate the lumbering fool who interrupts us when we’re out having dinner with friends to scream “OH MI GAHD YOU ARE SO ADORABLE!” but we do, under it all, understand. In stumbling forth and saying goofy things (that are often regretted right away, much to our amusement) strangers are attempting to humanize what seems so inhuman. They are trying to put a person behind that strange physical presence. That’s why we try to be patient and tolerant. That’s why the best question to start off with is “hi, what’s your name?” (at normal volume, please)

Medical personnel, yeah not so much. Yes, I know they are curious too, probably even more so, but their curiosity is not an attempt to humanize us. Their curiousness is quite the opposite: it is an attempt to label and categorize us which is to say, dehumanize us. Medical personnel will go out of their way to start grilling and interrogating in order that the outward physical form they are so curious about can be studied and dissected (mentally) and labelled properly and added to their store of objective knowledge.  So one develops a very different attitude when dealing with medical personnel than with strangers. I understand curiosity, both personal and professional and I most times will try and answer the questions barked at me. In many cases, I know the medical person has a job to do and they don’t and can’t know that I’ve answered those same damned questions at least twenty times a year every year since I could talk. It’s at best tiresome, but I can handle tiresome. So when it’s in the course of dealing with medical issues (which as you can see from the above facts, I’ve been picking up over the years much like I collect Star Wars paraphernalia – just a lot less fun) I will listen to and answer the basic questions. Sadly, most medical personnel are not satisfied with just the basic questions. Which would be fine in many cases.

However, when it comes to medical anomalies such as myself, they do not observe professional boundaries. The example with the urgent care PA bursting in on my x-ray is only one such instance. I could not begin to count the number of times I have been accosted by medical people who had absolutely nothing to do with me, my medical case or my current medical crisis and expected to achtung! to their orders no matter who they are because they are, after all MEDICAL PEOPLE and it is my job as a patient to answer every question they can think to toss at me. It does not matter if they happen to be walking down the same hall as me or if they happen to be a proctologist visiting his pal who specializes in eye-surgery; if I am there and they see me, they get to ask questions and order me around. It’s as if my mere existence in their visual field is sufficient permission.

…That’s the ones who at least have the wherewithal to interrogate me.

Others, simply make their assumptions and put them in my record without knowing anything about me or speaking two words to my face.

Another example: I was pregnant with my first child. I was nervous, as any expectant mother, but I was not particularly worried about my condition or being pregnant. My family physician who I had known from age 8 had assured me when I was a teenager “don’t worry, you have plenty of room to carry a baby like anyone else. The body makes room. You will be fine” and to doubly reassure me, she found some obscure medical texts of some women in Europe with the same condition who had given birth.

Well I was in a practice that primarily used midwives. On my third visit, the midwife told me I needed to meet with their supervising doctor, all perfectly normal, nothing to worry about everything was fine. But I wasn’t so sure. You see, the midwife had never, not once, asked me what my condition was. And that was damned odd. But not entirely unknown either. At that point (I was 24) I knew what that probably meant: she had already decided she knew what my condition was and wasn’t sharing her conclusion with little ole me. Considering I had never met this woman in my life before I got pregnant and I had only moved to that state two years prior, I figured it was highly unlikely she had any records or whatnot from my family physician. Especially considering they never asked me for releases.

So one visit, I was waiting for my midwife and I opened the exam door, grabbed my file from the folder on the wall and started reading it.

Wow. There were in total 15 pages written up by two different midwives about me. And none of it was true. It was all conjecture on their part. There was only one or two recordings of my visits, everything else was their supposition about my condition. None of which had they discussed with me. None of it. And mostly, it was all wrong too.

So when the midwife came back, I let her have it. I blasted her up and down and threatened to rip the file to bits. I threatened to walk out of their clinic. I threatened to have my baby in a hotel room. I threatened to call the Local news. I scared the holy hell out of her.

That story ended well…. eventually. There was the whole meeting of the supervising doctor, who wanted to schedule my c-section right then and there despite my protests. There was the firing of that doctor and our decision to hire a midwife of our own choosing. There was the hospital HR woman who begged me to fill out multiple complaint forms since that doctor had a reputation of being a horrible asshole. Then there was the visit we had after my NINE POUND son was born by NATURAL childbirth and watching that doctor and the old midwife grit their teeth as they smiled at us.

…yeah, some stories have good endings.

But most of my stories unfortunately end with me screaming at someone and walking out. OR me gritting my teeth and putting up with someone treating me like an amoeba in  petri dish because they had some medical knowledge or expertise I needed to utilize once they were done barking questions at me and thumping on my spine while I touched my toes. Such is the life of the physical freak with an “orphan” disorder. Yay. You get used to it. Kind of.

I will interject here one striking difference: Nurse. And I mean Registered nurses. Aside from the nurse-midwife I mentioned above (and I don’t know that she was an RN, I strongly suspect she was not) RNs have always been nothing but wonderful and respectful of me. Sometimes they ask me about my condition, sometimes they don’t. Sometimes its because they have to and sometimes its because they’re curious. They never pretend its one when its really the other and they are always so very human about asking. I love every RN I have ever dealt with. Really. I don’t know why, because I’ve had LPNs who weren’t so kind. I’ve had PAs I wanted to strangle. I’ve had basic techs who could not be respectful if you stuck an IV in them and pumped them full of oxycontin and phenergan. Some people are just rude and joyless. But every single RN I know of has been wonderful.

So now you know why I hate doctors and am very suspicious and wary of all medical personnel, except RNs. God bless RNs.

Don’t worry I’ll hit this subject again. Good night.