Reflections of and on a probably Asperger's parent parenting an Asperger's kid (or 2)!

dragon pups

dragon pups

Saturday, February 11, 2012

Eating is a Contact Sport

OR Expanding the Gross-Threshold

1) I read a story to day published by NPR that babies that feed themselves have better eating habits and no obesity.  The picture with it showed the proverbial kid with food smeared all over his face.  This article said that kids that feed themselves make healthier food choices (choosing carbs instead of sweets).

2) I read a post today on an autism discussion page about letting kids learn to do it them selves - being sure not to foster/ enable excuses for not performing tasks.  The goal of the post was to encourage parents to do everything WITH their child so the child still feels enabled enough to complete the task when they are physically strong enough to do so.  The specific example was spreading peanut butter, which takes a very particular technique, mastery of applying pressure and smooth movements.  It IS difficult when first attempted, but can be conquered with technique.

3) My kids do both of these things.  When they were super-littles, I put food right in front of them, and then I ate... especially while nursing I found that I was RAVENOUS, and if I didn't eat, then I was very irritable- which is not good for me or the kid.  It's kind of one of those "put your oxygen mask on you first" kind of situations.  Yes, yes.. I checked to be sure there was no choking when we first started, but before long I was just leaving mixing bowls of cheerios out so that my grazer could eat whenever he needed to with out my whole world having to stop.  How else was I gonna get all that laundry done?!  Besides, picking up cheerios is supposed to help with pencil grip (not that it has panned out that way for my Aspie, but whatever).

As to being en-abled:  I am a student of history. I am very well aware that in a farming economy, children WORK.  A 2 yo can still collect eggs from the hen house, or carry bedding, or something.  The reason children worked in factories when the world economy became industrialized is because they would have been contributing family members on the farm, so why not now too?  Families required every member to contribute.  The Lowell Mills (first major fabric manufacturers in US) specifically sought un-married young women as laborers... the family members who were a drain on their family's economy: a mouth to feed without being an essential laborer.  Add to that my Montessori background - where the whole idea is that people learn with their hands, by doing.  In a Montessori school all children work, all the time - every activity is called work, because it facilitates learning.  The word play seldom exists in Montessori schools.

So my kids WORK.  Everyday I find myself saying "you live here, you work here" or "work before play" or "God gave you arms & legs, USE THEM".  As we have moved into early elementary years, I often find myself saying, "I am NOT your servant.  I will not do your work for you."  It is one thing to openly acknowledge a challenge, a lack of ability, it is another to use it as an excuse, to let it be the reason an attempt isn't even made.  Don't get me wrong. One lesson I learned in a Montessori classroom was that when the jobs are everyone's responsibility, if you wait long enough, someone else will do it.  I have subconsciously practiced that with my husband for years. [If the gross dishes bother him so much, then his sorry butt can do them. I consider it working to my strength...] Chores are not fun, but they have to be done. 

But there is a difference between acknowledging to my kids that I don't want to do it either and doing it FOR them.

So my kids feed themselves.  Basically they do so most of the day. I only make them sit down with the family for one meal a day (evening).  Otherwise, they pretty much scavenge.  There are rules for scavenging, of course.  They aren't allowed to use the microwave or stove or a sharp chef knife (they are only 5 & 7), they have to eat at the table (can't wander around with it - unless it is one of those things classified as an "outside food", like popsicles or pop corn), and they have to clean it up (that we are still working on, but I have been hitting heavy on it the last week or so), uneaten food back in fridge, dishes in the sink, trash in the can, bodies washed up - sometimes that is just hands, but sometimes a shower is entailed.

So let me explain about the showering.  It is directly related to the SPD and the self-skills.  One of the first skills my kids learned was to defend themselves from the dog licking. [EVERYONE should have a dog when they have a baby! - it heavily off-sets the increasing of the gross-threshold!]  I remember the pediatrician asking me how many times I bathed my baby.  "Um, every meal, duh.  His whole body is covered in goo!"  Looking back now, I bet that should have been my first sign that we had sensory oddness, but it was my first kid, I thought it was just part of the process.  So whenever he ate, he rubbed it all over himself, in hair, across face, on clothes.  It was very gross.  I did not want to touch that!  So I usually laid him on the floor for level one cleaning from the dog (gets off the big chunks), and then we went directly to the bath for level two cleaning (stickiness & caked on smudges).  The high chair was hosed daily. 

As he got bigger, I resorted to finger foods, constantly.  [This became a sticking point with my parents, who insist that a meal is not a meal without gravy.]  You cannot give gravy or anything with sauce to an SPD kid and then be surprised that it gets all over his body & the furniture within his "splash zone."  Everything else necessitated double overtime cleaning - as in kid goes in bath while I am vacuuming and scrubbing furniture. I am left with no hot water for dishes or my bath.  This cycle is very discouraging when it happens 3-4 times a day, and eventually the lack of hot water catches up with you.  Dishes start to pile, laundry starts to pile, and getting off the big chunks is sufficient (usually - especially if he's just gonna go outside and smear his body with mud anyway.  Yeah, we had about 1.5 years of that...SPD at work again.)  But even finger foods leave you with crumbs and grease spots, and you still gotta give them drinks...

There is just no getting around the fact that eating remains a contact sport for my kid.  I remember as a kid my dad telling me that you knew it was good if you wore it too (usually referring to BBQ), so I am thinking I should just appreciate his zest for deliciousness?  Lord knows that when I have a religious experience with food I just want to smear it on my chest... so maybe it's ok.  Either way, it's unavoidable.  The kid is going to have a multi-sensory experience every time he eats.

And here I think is the hang-up.  There comes a point where you have to justify your reality, where you have to accept the inevitable, where the gross-threshold just expands, exponentially.  I think every parent comes to grips with icky-ness, but the autistic/ SPD kid just keeps upping the icky-ness, and the adults around them learn to cope. 

And the rest of the world judges.  In our neighborhood, a social services investigation was initiated because the teachers reported that the sped kid came to school "dirty" every day. Really?  And then the fear creeps in... my kid just ate that nugget off the ground at the park - will the other parents report me?    My kid just licked the fence - who is watching?

The devil is in the details.  If the dirt is harboring bacteria and contributing to a wound, hell yes, action is necessary. But what if the kid's like Pig-Pen, and just attracts dirt (and yes, I have had several students like that, I swear dirt used radar on that kid).  If the nugget had been there a longtime, was growing crud and would make the kid puke, hell yes, action is necessary.  What about the 10 second rule?, or the SPD kid who is looking to add crunchiness to the nugget (yes, my son has done this.)?  As to licking the fence - he did it at a zoo, "because my tongue itched" he told me.  I wasn't actually present, he was with extended family on that occasion.

As the parent you eventually grow a certain level on numbness.  Not because every kid doesn't have gross stories, but because that "phase" does not leave.  We are talking about a group who commonly has OCD (Obsessive-Compulsive Disorder), and the other extreme is the fastidious kid who won't eat or play outside - the germaphobes.  Establishing a "happy middle" is VERY unlikely, or at least takes a VERY, VERY long time.  Applying ideas from one situation to another does not occur.  So when he says "I licked a fence at the zoo", and I say, "Well, you shouldn't do that again" - that just means don't do that at a zoo.  Fences in other places are still fine [in his head].  Or you can try the blanket statement: "Don't lick any fence ever again." - which is probably OK for fence-licking, but it's not really a good tactic.  Like the time my son ate a random mushroom he found growing at the park, and we went to the ER [per poison control] and the doc wrote in the discharge: "Do NOT eat at the park again" [No more picnics? Hell, no!  Especially since I try to make them eat outside as much as possible during the summer - less clean up].  So we told him, "Don't eat mushrooms unless Mommy buys them from the store" - which means unless he sees ME buy them, he picks them out and refuses to eat them [like at grandparents' or restaurants].  So, you see there comes a point where nuance just loses its priority. 

The kid did not eat anything poisonous today, so we are all fine.

The more you say that, the more you believe that.  But your neighbors, the school staff, the strangers at the store are not telling themselves that everyday.  They don't believe that.  And they see the nonchalance, the increased gross-threshold, the apparent lowering of standards for socially acceptable behavior, and are concerned.  Concern turns to judgment. 

Judgment can turn to action.  And that begets fear.  So the parent of the otherly, the odd, the autistic, the SPD child is quick to make sure labels are clearly marked so that the judgment (and action) are in a context that does not criminalize the parent.  Because they will.  Social services does come and put children in homes, schools do set kids up to be ostracized & ridiculed, strangers do tell you off in public places, extended family does tell you it's your fault, and parents are judged as criminal in the minds of the people around them.  The fear that disciplining a child will lead to accusations of abuse is widespread, not just in the special needs community.

And what does that do for a kid?  I can tell you that for my 7 YEAR OLD, he already knows he is disabled.  When he approaches a task that is difficult for him (fine motor), he tells me "people like me don't do things like that."  The words "I can't" are said WAAAAAY too often by him.  The professionals call it an inability to transition - he protests vehemently every time he is given directions, that he thinks are too hard for him.  The non-professionals call it disrespect and obstinacy.  There are days I despair of ever seeing him live on his own, because he won't work, because he will stand in the corner and wait for the world to come to him because he believes he can't go find it.

And there are days that we practice Adventure Therapy, and we go new places, and we arm him with coping skills, and we show him strategies for learning and seeing, and applying.  And he grows every time.  And he stands out as odd every time, so the fear of judgment is the elephant in the room, every time.  And he incrementally learns that other people's gross-thresholds are NOT in the same place as our family's, and I warn every waitress that eating is a contact sport, and we need extra napkins.

And the cycle perpetuates.  He feeds himself, because I am trying to enable him, and it's a contact sport, with carnage everywhere, and his different-ness becomes painfully obvious, and we resort to sharing the label to avoid the judgment, and the child is reinforced that he's not doing it right, that he's not really ok.  In fact, he's kind of gross.

BUT... he really does have good eating habits.  He chooses vegetables and meat over bread of sweets just about every time, and he only eats when he is hungry.

Wednesday, February 8, 2012

STORY TIME

Bear with me, lots of background:

My family is basically Southern... East Tennessee to be exact, though my mother's side has some really great pretensions of Greatness in Georgia.  My parents relocated to Southern California shortly before my birth, for reasons still not entirely clear to me, though I understand they involved my paternal grandmother and politics (of both personal and national natures).  So I grew up in Orange County, CA… and NOT like in current reality TV shows.  We lived between Disneyland and Knott's Berry Farm, an area that is ethnically diverse, full of WWII era track homes, solidly middle income, with working class leanings, and the most conservative county in the state... kind of an urban country people kind of place. 

Our Southern Identity was important to us.  My parents made SURE we replied "ma'am" and "sir" (which was ridiculed as we got older), and help our selves to a high moral and social standard of honor.  An important part of that Southern heritage is that my mom can COOK.  Our house practiced True Southern Hospitality and was a frequent destination for co-workers of my father, sorority sisters of my mother, all our friends as kids, and sometimes the odd loose ends (like the Czechs that came for a cowboy shoot with no hotel room, or the old lady and her grandson from Scotland who had been mis-informed by Disneyland about what was included in "all-inclusive", or the poor guy walking the street who was just trying to sell us a newspaper...).  Ours was a hospitable household.

The core of hospitality is FOOD.  There is no question that my mother was/is a very talented cook, and she could make all kinds of wonderful things, but Southern Hospitality is not just about content, it is about format.  As I got older and saw how other families lived, that format became more obvious... and it clearly was a good thing, or my friends wouldn't be there for dinner every other night! (‘cuz they could have come for leftovers after school, but they came for dinner.)

Now "dinner" was/ is a charged word at our house/ my parents' house.  It conotates all that subcontext of appropriate grooming & dress, poised dining skill, and polite conversation.  We ate with gusto, but we stayed at the table for the social aspects of dinner.  As I understand it, this is a dying practice in the world today... certainly my family (as in now, 2 kids + husband) practices it far less frequently than I did as a kid. 

Part of the peculiarity of dinner at my house was it's time.  The family down the street from us had dinner at 5:30, every day. At our house dinner was at 8 pm.  When I grew up, I learned how very Spanish that was of us (in timing, not in food volume), but it occurred for us as a function of my father's job.  My father was a Police Officer, for 30+ years, and a night owl by nature, so he chose to work the graveyard shift for nearly 25 of those years.  My father left for work at around 9 pm, returned around 7 am the next morning and slept while we were at school all day (we had to be very quiet after school).  The noise level at our house picked up around 6- 7 pm (sunset) and then came the commotion of dinner, followed by the ceremony of dinner, and then dad left and we cleaned...

Now an 8'o'clock dinner is pretty hard on a kid who gets lunch at 12, so my family refined the practice of the "hold-me-over" snack.  After school (3-4 pm) we got a snack, sometimes hors d'oeuvre type things, sometimes leftovers (in high school), sometimes popsicles, but a snack.  Effectively, I ate 4 meals a day growing - up: breakfast, lunch, hold-me-over, and dinner.

Fast forward:  my parents are now deservedly retired, and I have the habit of using their flexibility of hours to heavily supplement the management of my homeschooled spectrum children.  Old habits die hard, and my mother does not even consider cooking dinner until it is dark outside, and my father routinely has a "hold-me-over" in the late after noon (a late tea time/ happy hour-ish), especially when the grandkids are visiting - since my Asperger's kid is a grazer (has been since BIRTH - the lactation expert in the hospital told me he'd eat that way the r-e-s-t  o-f  h-i-s  l-i-f-e...  nursing had a steep learning curve for me) and eats like a hobbit - every 3.5 hours.  Now, my Asperger's kid has added hold-me-over to his vocabulary.

EXAMPLE:  4:30 pm- I have just cooked rice & pork chops - 7 yo looks at it and says, "No thank you Mom, I am going to have a hold-me-over instead" as he is holding the container of leftover Chinese rice.

EXAMPLE:  1:30-ish pm - I have just put the dishes in the dishwasher from lunch, gone upstairs to relieve myself, and return to the kitchen to find him at the table with a Tupperware of cold tortilla soup - "How do you like my hold-me-over, Mom?"

EXAMPLE:  I am in the computer room checking on all the support pages for even more info and insight into Asperger's while the kids are playing Wii, when I hear a very stealthy opening of the cupboard.  Wait for it... a strong odor wafts in to me..."Child, What are you eating?"  " It's OK Mom, I am just having this packet of tuna fish for a hold-me-over"

Today I called my father and thanked him heartily for increasing my child's vocabulary.

On Seeing Solutions

I recently read a post on one of the groups I follow (parent support groups for special needs kids) that went something like this:
            Teacher has recently (2/3 into the school year) informed parents that Student is being held out of recess daily to complete written work.  Once the student is alone in a quiet space, the worksheets are completed quickly & correctly.  Parent is asking for help on how to get School to better recognize sensory needs.

Our experience has been strikingly similar.  Our Student exhibits learning needs that do not match the “traditional” classroom environment even though academics are “not affected”.  As I related this post to a friend who is studying to be a teacher, my friend asked me to look beyond my frustration and outrage into solutions.

The reasonableness of my friend’s request struck me as incredibly na├»ve because:

1:  My observations as a parent are that the School is in no way shape or form even remotely interested in even pretending that there is a solution that they could facilitate.  Our experience is that we, the parents, must be our own solution… what ever that may be:  Warrior parenting, raising cain with the county SpEd people, getting prescriptions, outside OT, homeschooling, just telling our kid to bite the bullet & take that BS….
2: My experience as a classroom teacher is that each teacher is encouraged to be the dictator of their own room, find the logistics that match their content to their personality and get the appropriate records where they need to be on time. The reality is that new teachers are routinely told to do what works for them and make sure they can back up their grades with some documentation.  Ultimately, if I tried something & it worked, good, but if it didn’t, I was at personal fault.  I was not encouraged or given resources to look outside my classroom for means to accommodate a child.  By all means I could get creative, but not unconventional.
3: In conversations with my child’s teachers, and my experience as an elementary Spanish teacher the lack of support from and to “specialized” teachers (whether special education or non-core subjects) is readily apparent.  They are expected to manage a diverse body of learners with whatever means they can devise as long as they do not stir up notice or ask for extra time from other staff.  The classroom teacher who sees my Student 5 days a week is NOT in collaboration with the art teacher who will be most likely to see the fine motor resistance.  The Librarian who greets my Student off the bus is NOT communicating with the speech teacher who sees my Student in the afternoons.  The school counselor who sees my student weekly for social skills is not involved when discipline is required for inappropriate contact at recess. I, as the Spanish teacher, am not asked to relate my activities to current classroom topics, and when I ask, am discouraged and side-lined.
4: The sum of my experiences shows me that the School, the Educational Establishment denies that anything is even “wrong” in the first place – except that my Student is disabled, of course.  And I am clearly NOT the only parent feeling that way…

Then I thought: what would I have wanted to do if I were the teacher:

I would have wanted to find a way to enable that student to be successful in such a way that Student’s physical release/ movement and social standing were not involved.  I would have wanted to ask my grade level team, and maybe even a specialist for suggestions (which many schools do enable).  Most importantly I would have wanted to ask my administrator if there was a logistical way to give Student quiet space during what would  normally seen as “my” class time.  I would want my administrator to assume I was asking because it was in the best interest of the student, NOT because I couldn’t “handle it”.  I would want the librarian or aide or whoever worked with Student to not groan and whine that I was mis-using their time or space.  I would want the parents to not complain that I was singling Student out unfairly, and I would want the other students to respect that Student is still their equal even if he/she worked differently.

Then I thought: Is there reason in this unreasonable question?  Why aren’t better solutions being tried/ executed? What needs to change?

Here, I get stuck.  Maybe it is because I am a “big picture” thinker, or maybe it is that I am Asperger’s enough myself to think in iconic principles, to see everything in paradox/ extremes, but I think the answer is really quite simple:

We, humanity, need to let everyone be different.

That’s it.  There’s no fancy lingo, no complicated plans, no legislation.  And this is not a new or even far-flung idea.  Yet it just does not happen.  We are all over it, don’t get me wrong.  We have legislated that every child will get what they need (even though we measure them all by the same yard stick), we talk about letting people “find” themselves (though we keep making recommendations and condemnations), we extol flamboyancy in celebrities (though we vilify & ridicule), and we seek self-improvement and spirituality collectively and individually.  As a matter of fact our justice system is based on that idea (that we can help the criminal to grow out of their criminal behavior if just re-train them enough).  We are all over this idea of everybody being different…

So WHY is it so hard to BE DIFFERENT? 
WHY are there SO MANY of us (I would say on & off the spectrum) who struggle, who feel forced to conform?  It MUST be part of the “Condition of Man” – almost EVERY piece of literature in the universe is about it, from the slutty romance heroines who are so misunderstood they mess up a perfect opportunity to get laid, to Don Quixote with characters dislocated from his historical context.   Isn’t that the underlying theme for Twilight, and all the Disney Princesses, and Diary of a Wimpy Kid, and … just about everything you’ve read?  EVERYBODY is just trying to be whoever they were destined/ designed to be

Why is it so hard to believe we are all different? 

On Teachers


First: I sincerely believe that teachers are BORN, not made, meaning that Teaching is an innate gift/ talent that can be honed & trained but NOT instilled without pre-disposition.  Either a person has the innate drive to communicate effectively with others, or they don’t.  Either a person finds joy in the achievement of others, or they don’t. Either a person believes that people can grow (including themselves), or they don’t.  I find these 3 characteristics to be the common attributes of all the successful teachers I have known. With these 3, all else is a matter of format, and format is always adjustable. 

If a teacher is not driven to communicate effectively, the they will not go through the continual informal assessment that is needed to Teach.  If the teacher is not worried about whether or not the learner is “picking up what they are laying down”, then they will not try new modalities of sharing (auditory/ visual/ kinesthetic), or try to use creative vocabulary, or seek the “window” through which the learner can interact with the information (like a topic of interest or culturally relative context).  It is this drive that helps to create “user-friendly” manuals and instructions, that keeps a teacher up at night trying to “figure out” a “hard kid”, or makes us think of how we could have said something “better”.  It is the desire to communicate effectively that makes us listen effectively, that helps us realize that what we say is not what the hearer hears many times, and that we need to find the differences between the two and “clear it up”.  This is the part of a Teacher that brings him/her to the student.

If a teacher does not find joy in the achievement of others, then they will not put themselves into a position to Teach.  If the teacher is not seeking that “ah-ha” moment, then they are not going to connect the information to the learner.  When a Teacher feels that sense of contentment, of completeness, in the moment a learner masters a skill or conquers a fear or earns recognition from peers he/she will be driven to keep sharing and connecting with others.  To be clear, I am not talking about that sense of joy that comes from putting a laurel in your own cap because you were the “boost up”, because the learner’s success reflected on you.  What I am talking about is that kind of loving satisfaction you get from knowing that you’ve taught a starving man to fish, knowing that you have tossed the unnamed stone whose ripples will resonate through time, knowing that years from now people will depend on that student because they have mastery, and that student will depend on themselves.  Finding joy in the achievement of others means the Teacher is seeking to instill confidence in the learner of the learner’s own abilities.  This is the part of a Teacher that drives them to be the verb Teach.

These two attributes I have seen lauded and described with other vocabulary in the years I have been a teacher.  What I think is often overlooked is this 3rd attribute: that a Teacher believe people can grow, get bigger.  Ultimately this is a place of belief about the most basic nature of mankind.  This is not describing that belief that 1st graders will live long enough to be 5th graders, or that athletes will age into retirement.  It’s not about ability, believing that every human being can learn new behaviors.  It’s beyond the proven adaptability of biological evolution.  This is the belief that every person’s heart/ soul/ whatever you call it seeks to be “better”, “bigger”, to love more.  And it’s not just about that love God asks of us, to treat our neighbors as ourselves, to take care of each other. It’s also about that love God gives us, that place where we know that God created us, and everyone else, for His divine purpose and we are “big” because of it.  This is about the release of fear from what we fail to be and the embrace of elation for what we are.  On one level this is how Teachers stay Learners, how they remain connected with information, keep faith in themselves.  When a Teacher embraces this tenet deeply, this is what brings the students to the Teacher, because the students see that the teacher has faith in them.

I have taught in many environments, with many measurements of successful outcome.  Ultimately, a Teacher who has these 3 characteristics is valued because they Teach, and they find ways to measure the students accurately. 

And do not make the mistake of thinking I am referring to only Teachers in a classroom.  Look at your own life experience: where did you find the Teacher that made your world bigger?  A boss? A coach? The friend that knows you too well? The committed spouse? Your children who reflect you?

The Lord works in mysterious ways….

On Faith and Hormones


WARNING: do not read if you are grossed out by reproductive biology or offended by mild cussing.

So my depression has “flared up” again, and as expected, in timing with my… um…  “moon cycle”.  I am very listless, with out any real positive ideas, and the more I talk about it the more people try to shine sunshine up my A** and direct me to just find or have more faith.  No, I do not want to believe that I am a horribly deficient person, that I lack the most basic tenet of Christian religion, that I am just miserable to be around or that I have disgusting character flaws.  I have spent years and years trying to come terms with this depression, to try to treat, medicate, counsel, etc. this business away…. But today I had an insight!

It’s all about biology.

My period is miserable. Now go ahead, lecture me about how it is all my fault, about how the diet I choose will severely impact my symptoms, that I need to manage it better with exercise, etc.  You’re right, there are probably some things I could be doing to improve how I experience my symptoms. Bite me. The truth is that I come from a LONG line of women with VERY strong hormones. Every blood relative female for 3 generations (living) has had serious hormonal complications.  I do not need to give you a family medical history. You need to trust that I am not making this crap up and that I am intelligent enough to see the patterns.  From puberty through menopause, the women in my family have obvious behaviors and medical complications directly corresponding with their hormonal cycle. 

When I was younger I was told that childbirth would even out my symptoms, that it would get better, or at least more manageable.  My childbirth experience has shown me…..  that I go into labor every months.  As I sit typing my hips pull and scream with the same back pain I had for 3 days prior to my deliveries and I am squirming to get away from a severe discomfort I don’t even know I have until I get snappy about it.  Yes, I have seen several OB/GYNs about it, like all doctors they are guessing in the dark too.  I know my body better than they do.  Nothing I have tried or been prescribed really improves the situation.  In an earlier era, I bet I would have been that woman who spent her whole life pregnant… and I was HEALTHY in my pregnancies. (The reality is: I tremble to even consider trying to manage another personality in the dynamic of this family!)

So it is very hard to be pleasant and cheery when you are in pain, but really that is not the seat of the depression (more like the surface wave).  I get very, very irritable, really angry.  As my skin changes, and my body parts ache, and I identify those sensations that came with pregnancy, labor and nursing, again, knowing I am going to lose a whole day to fatigue, and have extra laundry (increasing the work load while decreasing the energy level), and have to cook even though it makes me nauseous, and migraines that will make the lights too bright and the kids too loud, is it any wonder that I also feel a buildup of resentment, frustration, anger?  That as I get impatient with my body, I get correspondingly impatient with everybody else despite my best efforts to be cognizant of it and counteract it?  Everything just gets TOO big, the little challenges become big, the big woes I can ignore at other times become gigantic, all encompassing.  My failures to keep house, manage money, be patient with my children are just highlighted by my condition of gooey discomfort for 5 days (nearly a week!)  I get bogged down, have trouble seeing the light at the end of the tunnel, lose focus on those positives that carry me through the rest of my life. I get depressed.

I reach out to my husband, to my mother, to my friends, looking for self-affirmation, for that flicker of the good person I must be to have earned their love & friendship in the first place… ‘cuz I sure can’t find it myself right now. 

My family/ friend support network is very familiar with this cycle, unhappily so. I have been extolled uncountable times to get meds, see a shrink, get with God, just HAVE FAITH to get me through this monthly drama.  I have tried LOTS of things (including all of the above).  I am a deeply reflective person, and I am breaking my heart, searching my soul, beating my self up trying to be “right”, to live up to the high expectations I have of myself, which of course just makes the depression cycle deeper.

This morning I came to a point of realization, of opinion, a response to my loved ones & myself:

I HAVE FAITH!!!!! Stop making me feel bad about my relationship with God because I am a slave to my biology.  Why are we surprised that as I find my self forcibly subjected to the divine process of biology over and over and over I have found a relationship with God, a FAITH, that sees it HAS to be pre-destined, that God’s will is UNAVOIDABLE.  To restate the obvious: My gender and family history are not MY choice.  I do not get any kind of feedback or input into when or how the whole thing goes down.  He will put me through what ever He deems necessary, regardless of what I think life is supposed to be or should be, or is for someone else, or was last week.  I have FAITH that God will put me through a continuous series of trials that will be unpleasant & painful.  I have FAITH that even when I think I am as deep down as I can be, it will get worse.  I KNOW it, in my heart, and my experience proves it.  Every month as I re-face some of the worst pain I have ever known, I do so knowing I will do so again in 3 weeks.  Every time I see my face break out, I know exactly how much more it portends.   When I am at my most exhausted, my autistic child will have the daily afternoon meltdown.

A college professor once warned me that I would be addicted to anger.  But anger provides strength, a strength that overcomes weakness of the body, provides adrenaline.  I used anger’s strength to get me through 2 knee surgeries, 3 years of post-op PT and the delivery I was awake for.  I have worked to control that anger on a more daily basis, trying to make sure that it doesn’t undermine my relationships and sabotage my support network or self-esteem.  I am 35+ years old, a True Adult in my head, and as such I have tried to accept that I have failures/ weaknesses, to own my faults. 

But on my weak days, when I hurt, when the inevitability of my enslavement to my biology overwhelms & frustrates me, it is really, really hard to be a friend to myself, to deny the anger that provides the strength I need.  Every month I watch the people around me withdraw in emotional self protection when I need to tap that anger, when I reach out too many times for that glimpse of who I am at other times.  When all I want to do is scream for help, the BEST thing I can possibly do is shut up and hide. 

It IS my FAITH that God has some divine purpose, that this is supposed to be making me stronger, not just punishing me, that keeps me hanging on, EVERY MONTH.  My FAITH gives me the strength to hide when I need a hug.  My FAITH drives me to keep looking for those tiny nuggets of love in new places when I wear my resources out.  My FAITH shows me the dog who sleeps protectively by, and the child who comes to tuck me in, and the husband who washed the gross dishes, and the friends on FB that send “thinking of you” messages, and the parents who let me call to cry, and the security of running water, and the boss that finds me valuable all the non-bleeding days I work, and the beauty of the quiet sunrise.   My FAITH is the last thing I see when everything else is dark to me.  My FAITH shows me that this too shall pass and next week I will be better able to appreciate the laughter of children.

I don’t need more faith, I need more FORGIVENESS.

I need to forgive myself for being unable to be as good as I want to be when biology assaults me.  I need forgiveness from my friends and family for being less than they want and need me to be one week a month. I need to forgive God for besetting me with this unique body.  I need forgiveness from the universe for being unable to keep my anger and sadness hidden every month.

And I am ashamed of myself for being mean.  I am sorry, everybody.  Please forgive me for being of the “weaker sex”, for giving in to my anger. I am trying to “accept” my weakness too, but sometimes it is very, VERY difficult to be in the depth of God’s will for me and not rail against it.  And the next time you’ve lost pints of blood and hurt like hell, I’ll be sure to remind you to “suck it up cupcake” too.