Barnmaven

Not doing what I can't

I think I'm starting to get better at this grownup thing.  Perhaps, just maybe.

Race Car Man started a few weeks ago with a new therapist, this time one at a place whose clientele are people with autism (as opposed to a therapist who deals with autism among other things, which for us did not work so well).  I think its helping.  He's had more good days at school, he's starting to get homework again.  My ex had a schedule change at work that allows him to go to our son's classroom two days a week for a couple of hours which is fantastico.  If I could only find a way to make life outside of Minecraft even remotely palatable for this child all would be straight up and down.  You can't have it all. 

Amazon Girl also started with a therapist last week, as the doors of pubescent hormonal hell have apparently opened wide and beckoned her therein.  She's struggling emotionally and needs some support from an adult she can talk to about life, about her parents, about her brother -  which means a third party is required.  Fortunately the last therapist she saw, the one I really really liked, is still practicing and takes our insurance. 

Then on Wednesday nights I still have obedience school with TBone.  And Sundays there's church and then Amazon Girl has her riding lesson, and most Saturdays from here until the sun goes away in the late fall again, I have something to scheduled to do with my horses.  SG has guitar lessons every Tuesday and just got started with some group political thingamajig.  And so on.

Sometimes in between all of that we sit down for a few minutes and breathe and maybe fold a load of laundry.

Last week Race Car Man's therapist asked if we wanted to start him in her next social skills class.  "Sure, when does it start?" 

Next Tuesday. (Two days ago)

Its a class he needs, BUT - it starts at 3:45, just 5 minutes after he gets out of school, AND its a half hour ride away from his school.  And I work full time.  And my husband works full time.  And if I had some time to sit down and sketch out a plan it we can do it but Next Tuesday just does not work for me right now and I for ONCE in my goddamned adult life opened my mouth and said the magic words:

"I'm sorry but that doesn't work for our schedule right now."

I didn't even feel guilty about saying it.  I felt relieved.  I am doing all that I can do for my family and myself right now and I am not going to try and cram one more thing down our collective throats, not at this moment. 

There have been a lot of times in the last several years where I've felt almost all of my waking time was consumed with trying to frantically get everything done that I am supposed to do and failing miserably at it.  Its a horrible pattern - try to do more than you're capable of, fail, drop two or three of the balls you're juggling and then spend a month trying to dig out of the hole you've just created for yourself.  

Perfectionism just isn't going to happen for me right now.

There will be a point where our schedule will open enough to make the social skills class do-able for us.  It will happen.  Just not two days ago.  

Slow down. The tempo isn't as fast as you think it is.

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Life is such a balancing act.

There are periods of time where I am calm, unperturbed, I have everything together.   There are other times when I feel like everything is falling apart and I'm just screwing it all up.  I would be lying if said that I was always more together than not, or that sometimes these barometric changes never occured once or twice within the same day. 

When SG was gone, there were times I really struggled to hold it together.  His prolonged absence and his occasional disgruntled reaction to my letting him know how hard a time I was having triggered my lingering abandonment issues.  I'd have days where I felt like nothing was ever going to be OK again, even when I know better than to think that way.

Now he's home, he's been home for more than a month.  I fall into the trap of being so completely content that I start telling myself that everything will always be this way, always be OK.  And that's a trap I don't need to fall into. 

I suppose there is tipping point between the dramatic rise and fall where I am grateful for all that is going well, I am coping moderately fine with the things that are difficult, and I know and accept that things could be a whole lot better or a whole lot worse, and probably will be some of both before my turn on the carousel pony is over.  I know there are a lot of things I'm able to cope with better than I used to.  There are a lot of things I've given up trying to control and other things I'm still working on letting go of.  There are also, truthfully, many things I know that could stand to be improved.  Some things I'll very likely gain ground on and there others I quite possibly never will address.

I'm challenged at home and at work right now.  Not with the husband, thankfully.  SG is relatively unperturbable, he is fun to hang around with and the needle is staying fairly reliably in the "awesome" segment of the dial.  Thank God for that. 

I've been very fortunate, particularly in the last few years, to report up a chain of command of people I respect and who have been more than willing to mentor me.   Like a lot of people, I've worked for a wide range of managers, some great, some horrid.  I really appreciate a manager who doesn't beat around the bush, who lets you know what you did wrong and then doesn't remind you about it forever, who lets you know when you've done well, and who gives you good advice with the sincere intention of helping you to be successful in your environment.  I have rarely worked in a place where I had the level of trust in my manager and my manager's manager that I do currently.  I'm pretty damn grateful for my job and my company.  It helps that I really love what I do.  I have mentors and I have some great role models.

But like every work environment, things can change.  No, let me rephrase that:  things WILL change.  No company or culture or group or individual can stay the same forever.  As we move forward with some big projects looking to grow our business, I know my little corner of the world will change.  I need to seek the opportunities that change provides, accept that change will come, and find ways to support my people in ways that help them succeed in an environment that requires flexibility and ingenuity.  We need to continually find ways to do things better, and sometimes that means blowing it up and turning it into something completely new.  I don't think I can be a good manager if I don't find ways to keep the moments of "OHMAHGAH I'M SO STRESSED OUT TODAY" from taking over my frontal lobe.  You can't have much order and serenity inside your organization if your leadership is falling apart.

It feels like a big responsibility.

On the home front, I've made a friend recently who is a wonderful, if somewhat exhausting person.  She's boarding her horse with me, and because of her circumstances, we are bartering some property improvements and chores for the feeding and provisioning for her lovely little horse. 

Did I mention that my ex and I rarely had people over?

Well, we pretty much didn't.  Like EVER.  And of course I've mentioned that since we split up I opened my doors a little more often, but to those of you who truly enjoy entertaining I probably still look like a complete hermit.  Then I met SG, and we've had friends and family over more often than I've been used to, but I like it. And it wasn't overwhelming, but it also wasn't every day.  Now I've got someone who is coming by almost every day and interacting with us, and I'm not saying its bad, because its not -- its just a big change for someone who is used to being able to walk around half undressed most of the time.  And there are many positives -- my daughter is getting riding lessons from someone who is much more patient with her than I.  Things I need to get to and don't ever have the time to do are starting to get done.  My old horse is getting some exercise.   I've made a new friend who is kind and funny and unique.

I can wish for my little pond to always look the same, every day, but the wise little voice inside me says that stagnant water pretty quickly fills up with green slimy things.  You need a system of flush and intake to keep the water clear and potable.  So it is with my house and my life.  Change is inevitable, and change is not necessarily bad. 

Still, about once a day, I find myself starting to pace and talk to myself.  Less frequently, thankfully, I get the sensation that I'm standing on the edge of a cliff, ready to step off, and I don't know the first thing about how to put on a parachute so I have no idea if I'm going to hit the air floating or go splat!

Inner peace, baby.  I"m working on that.

 

The Language of Special Needs

I got a text this weekend from a friend.  She is a young adult "on the spectrum," as it were, and she had somewhat of a Facebook argument with another woman over a meme the lady posted about Autism.  My friend didn't like the implication that autism is not a disability but simply a difference and made her opinion known.  She wrote about the different issues children and adults can and often do have when they have an Autism Spectrum Disorder.  She responded from her own experience, in all earnestness. In response, apparently, the original poster called her a "bitch" and wrote that autism isn't a serious issue and said people need to stop complaining about it.

I have such a depth of feeling about this.  Its an internal conflict in a lot of ways,  because technically, my daughter's bipolar and ADHD and my son's Autism and associated disorders most certainly will cause them difficulties neurotypical people don't have or ever have to think about.  On the other hand, I think both of my children are capable of doing just about anything they set their minds to, and I refuse to let them use their issues as a crutch or an excuse.  Just yesterday, my daughter remarked in passing that her brother couldn't keep himself from fighting because of his autism. 

I told her,  "I'm not sure I agree with that.  Do you think he gets to just fight with people without consequences?  I don't.  I think he has to work harder than other people to control his behavior, but he doesn't get a free pass to just behave any old way he wants to, honey."   She thought about this.  "So its just like I get in trouble for fighting with Race Car Man even though I have bipolar?" 

Exactly.

On one level, I think that a cure for autism isn't necessarily on the horizon.  And no, for the record, I don't buy into Jenny McCarthy's assertion that her son has been "cured" of autism.  I think there are a lot of therapies and treatments and foods and supplements that can help kids and adults with autism function better and more successfully, but we don't know enough yet about the causes of autism and the inner workings of the autistic brain to be able to have a cure.  Should we be funding research for a cure?  Absolutely.  But at the same time, we need to be spending our time and our dollars making sure that we give kids with autism the skills they're going to need to live as adults with autism.  We need to be cautious of the words we use around autism so that we are not being derogatory or having pejorative overtones about a community within our larger community.  People with autism don't necessarily want to hear about the ways they are different -- they are looking for the ways they can fit in.  And frankly, some of the characteristics they bear as a result of their autism are truly gifts.   

I don't think you can look at someone like Temple Grandin, whose difference in executive functioning make it possible for her to understand animal behavior in a way that most neurotypicals can't begin to understand, and think of her autism as a 'disability.' 

There are a lot of conflicting opinions in the autism community about the language that we use and the way we portray people who have autism.  A lot of advocacy groups and adults living with autism are extremely opposed to the tactics of the group Autism Speaks.  The opposition stems from a number of reasons, primarily because Autism Speaks doesn't include a large enough percentage of adults with autism in their executive leadership.  Many parents and families of people with autism and many adults with autism also take issue with the way autism is portrayed by Autism Speaks.  They feel personally denigrated by videos and messages that talk about how terrible life is for families of kids with autism, by descriptions of their more challenging behaviors and thoughts.  There are hundreds of thousands of adults with autism living successful lives, managing careers and marriages and raising children. 

There are two sides to every coin, and autism is no exception.   The divisions within the autism community are understandable, impossible to ignore, and perhaps uncrossable.   Because autism is a spectrum disorder with greatly ranging degrees of affect, everyone's experience will be different.  Because no two people react to the same stimuli in the same way, one person's response to dealing with autism and their perception of how it impacts them will vary greatly from anothers. 

I don't believe autism has ruined our lives, I just think autism has given us some challenges we might not otherwise face.  But who am I to tell a mother whose marriage has failed and whose non-verbal child is a frequent eloper or who is physically violent that she's wrong if she feels differently than I?  Just as I would want her to understand where I'm coming from, I sure as hell bet she wants me to walk a mile in her shoes, too.  I also bet that there are times she wishes someone would find a cure right this fucking minute for the behaviors that make her life incredibly difficult and stressful. 

We take issue when a mother with an autistic child kills her child and then takes her own life.  We don't want the world to think that autism is this terrible, dark thing that can't be overcome.  We, as parents, don't want anyone to look at our children and think these things about them.  We want people to see the beauty and the strengths and the uniqueness in them.  Or at least, I suppose that we do.  But I don't know what the mother whose son was denied school placement was thinking.  I can't speak for her at all.  Clearly she was overwhelmed, probably under-supported, and desperate.  The mother of the adult son with autism was said to have a very loving relationship with her son.  What were her thoughts as she committed this terrible act?  We will never know. 

Parenting a child with autism or pediatric mental illness can be hard, terribly hard.  For most of us it is NOT the end of the world.  Having autism and learning to cope with a brain that is not wired to function in the typical world can be anywhere between 'okay' and 'devastating,' depending on the individual and their place on the spectrum and the support, resources and therapies available to them.   Holding your bipolar child's needs close to your heart as you deal with them on the days they are unable to be loving or likable isn't very easy. 

We can't forget the families of the severely autistic individuals who rely on lifelong care.  As with any condition that renders a person unable to take care of their own basic needs, life becomes far more challenging and difficult, stressful and scary.  But those things don't have to mean that the person with autism and their family don't also have love and joy and wonderful times together.   The thing is, we can't deny that at least for some families, the good days are scarce and the bad days are the norm.  Some people aren't as capable of handling that as others.

Is it just too pat to say "Life is what you make it" ?  Life isn't fair, certainly.  We are all born with different abilities, strengths and weaknesses.  As humans we have the same rights, but we don't all have equal capabilities.  We must acknowledge this basic fact and work upwards from there.  My kids have stuff they've got to overcome, and sometimes that's really hard to cope with.  But cope with we must. There's more than coping, though.  We work to meet challenges and we celebrate our successes.  We learn from the bad days and we are thankful for the days that are good.  We cry, we rage, we beat our fists on the concrete, and then we get up and walk out the door with our hopes intact.  Some of us, though, throw in the towel.  Some of us don't see the up side.  Their experience doesn't invalidate my own; nor mine theirs.

Both extremes and neither. 

Can we live with that?  I don't think we have a choice.

 

 

 

Seeing beyond the label

Tomorrow the race car man has a very long evaluation to do. 

When his teacher wrote us to say that he was not showing any behavioral advances in school and that she felt something was missing from his diagnostic picture and definitely his medication toolbox, I stopped procrastinating and got on the phone with the insurance company.

The child psychiatrist who also manages Amazon Girl’s medication spent a half day with us, and we walked away from that appointment with a prescription for an anti-anxiety medication.  In just days we saw major improvements both in his ability to be more compliant at school and in the frequency and severity of his sensory meltdowns.   

This second evaluation will give me a much clearer picture of where we will need to approach behavioral therapy from.

I tell my kids frequently that I’m the luckiest mom in the world, and I believe that with all my heart.  There are times that their behaviors are irritating, when its easy to lose sight of the essential truth, that they are each unique and perfect in their own way.   While I like to think they embody the best traits of both their father and I, its probably more accurate to say that in two separate instances, our mutual DNA combined to bring something entirely new and special to life. 

Its easy when you have lots of doctors and diagnoses to get lost in the land of labels.  We need to have names and labels for our disorders, for our behaviors, yes.  But my child is much more than his labels.  His labels do not define for you at all the nature of who he is and what gifts he possesses within him.  My daughter’s labels do not come close to describing her enormous love for others, her creativity, her joy. 

Too many people look just at the labels.  Or they look at the behaviors the labels describe, and they make judgements without expanding their knowledge of the actual person wearing the label.    There was a strong reaction in the special needs community recently to some  negative reviews of the film Extremely Loud and Incredibly Close, a story about a nine-year old boy whose father perishes in the 9/11 collapse of the World Trade Center.  Although the book on which the film is based and the film itself never specifically say so, the character displays many behavioral traits that indicate a spectrum disorder – odd speech patterns and tone, difficulty with social interactions, extreme sensory reactions. 

The review that received the most negative response was from David Germain, movie writer for the Associated Press.  His review appeared December 19 at SFGate.com, the online home of the San Francisco Chronicle.  You can read the full article here, but the salient points are the following direct quotes:

”Newcomer Thomas Horn…is a mixed bag, holding his own among the adult actors, but, through no fault of his own, forced to behave with excessive shrillness much of the time.

That’s because his character, Oskar Schell, may or may not have Asperger’s syndrome, a mild form of autism (his medical tests, we’re told, were inconclusive).  You make allowances in life for people you encounter with autism, but spending two hours with a fictional character possessing autistic qualities can be grating.”

And those are the kind of people I dread my kids encountering.  The people who can handle special needs for a few minutes, but lack the compassion or the inclination to “see through” behaviors to the kid inside.  The kind of people who can’t spare five minutes to try and comprehend that a person is more than the rhythm of speech they employ or the pitch and tone of their voice.  

How much of a self-absorbed narcissist do you have to be to find the struggle of a child who has just lost his parent irritating because he doesn’t happen to sound right when he’s speaking?  How little humanity do you have to have left in you to NOT find this kind of story compelling?

Does it take some patience to look past my children’s behaviors?  Often, yes.  But you know what?  It takes patience to be a human being.  Whether you are dealing with people who are differently abled, who have mental health or neurological disorders, who are ill with a terminal or debilitating disease, you ought to be able to have a little patience.  You have to have a little patience to drive through a toll booth or wait in a line at the grocery store.  You need a little patience to cope with an aging parent who isn’t at his best now, but who is still a person you love deeply.  You need patience to try and go anywhere with an absent-minded spouse who can’t find her keys, her coffee cup, her cell phone.  You need patience to make it through a work day with people who are crabby or uncooperative, who didn’t do the things that you asked them to or who made a mistake that cost you time and money.

So even if we end up with another label tomorrow, it won’t change who my son is.  It won’t change the love and respect I have for him.  It won’t change anything but the ways in which we try to help him succeed.  Lets have a little patience for my boy.  Let’s look past his labels to his bright mind and unquenchable spirit.  Lets do that for every child, neurotypical or not, able-bodied or not.  Do it for me.  Do it for you.  For all of us, lest we lose our humanity.

Today's post brought to you by the wonders of cold medicine

I shudder to think of what I'd feel like right now without the bubbly goodness of Alka Seltzer Plus cold medicing roiling through my tired veins.  Even on the sauce, my nose is running, I"m sneezing like someone's sick idea of a cartoon joke and every time I blow my nose, the goop in my left nostril tries to exit via my eyelid.

I managed to make it to work, though.  I'm sure my coworkers appreciate the plague I'm spreading via every doorknob.

Image courtesy of  US National Library of Medicine

Once when I was in high school I had a sinus infection that spread into my eyes.  It wasn't pinkeye, it was a sinus infection, and every time I would blink my right eye, a think film of yellowish-green goo would spread itself over my eyelid, almost completely obscuring my vision.  So attractive.

In a way, I'm grateful for the fuzzy wooziness of my brain right now.  It provides an insulating blanket between me and life. 

I just managed to get a new evaluation appointment set up for my little guy with a psychiatrist in a couple of weeks.   That's unheard of around here, this doctor and most of the others have a 3 month wait for new patients, but we managed to call right after somebody cancelled so we got lucky.  Lucky is a rather dubious term, but lucky it is, to get in before the end of year while our deductibles are all met, lucky to see the doctor who already knows him because he treats my daughter too, lucky to have a teacher who communicates so well on what she sees in the classroom so that there's no disconnect between what we think is going on and what is actually happening during the school day.  He's still struggling.  He's in the right place, no doubt, but still struggling.  And the teacher is kind of surprised that he doesn't have a certain diagnosis, because behaviorally he is so similar to the other kids in her class that have that particular issue.   I had ruled it out before because there were a couple of symptoms that didn't seem to be a match, but looking at it more than a year later with kindergarten behind us and current behaviors in our face, I'm shocked it didn't stand out for me before now. 

I don't want to put it out here yet, because with kids a lot of issues that might seem like one thing can actually be something else.  So I'm going to try to just be patient and open-minded and see what the eval results tell us, then we go forward from there. 

All I really care about, ultimately, is that we know enough to provide him the right kind of  support.  It doesn't matter whether he has diagnosis A, B or C -- it is what it is, all that changes is how we help him cope.

I spent the obligatory hour on the phone with three different people at the insurance company yesterday, only to end up with a referral to a psychiatrist who, as it turns out, doesn't actually do pediatrics.  But that landed us with the resident psych at the center who does, and we already know him, so that should be good, right?    Still, its frustrating.  We're also being assigned to a dedicated team by the insurance company who are supposed to provide me with as many local resources as they can find for me within a week. 

Fortunately, my wine rack is well stocked right now, its a Friday night,  and the kids are at their dad's for a few days.  I have some time for a pity-party before I need to lift my chin up and buckle my seat belt.  Of course, with the cold medicine I'm not really sure I'll need the wine, and with a clogged schnozz I probably wouldn't enjoy it anway. 

 

 

A light so bright it hurts my eyes

In the noise and chaos of dealing with too many balls in the air, I'm not overburdened with opportunities to think.  Between the kids, work and animals, usually any chance that I might slow down and string two coherent thoughts together about how I feel and where am I going in life are interrupted because a ball or two is about to go SPLAT!  Quick, catch the ball!  What was I thinking about?  I forgot. 

Suddenly Sunday night arrives and the kids are off to their dad's.  I'll see them after school four out of the next five days, which helps, but its evening, and then its morning, and holy crap, its dark out.  Fall arrived and I was so busy avoiding thinking about it that it I almost didn't notice it happening.  Lets just say now would not be a good time to run out of Wellbutrin. 

I have reason to believe that this winter will be better than last winter, which was better than the winter before.  That two-year-old winter, just post-separation, was fucking brutal.  The kids were fighting our family's circumstances with every fiber of their beings, I was facing nights where my kids were not with me and I had not yet done the work I needed to do to accept that pain as a part of my life.  It was dark, I was alone, and even though I was finally free of living within an angry and shattered marriage, I was not used to being alone.  I made it through, by the skin of my teeth it seemed sometimes, and by the time the next winter came around, I was doing better.  I was making progess in my personal psychological and spiritual practice.  I was finally comfortable with being alone, with periods of quiet contemplation.  I had things to do and friends to enjoy when I needed some time around other people.  I met SG, and for the most part, the rest of the winter seemed effortless.  I was happy, mostly.  The depression was there, of course, it always is, but it crouched inside its little mouse-hole, barely poking its nose out to sniff the air.  Occasionally it would skitter across the floor, only to be vaporized into black smoke by the shining bright light of my happiness.

This year things are somewhat different.  I'm with someone, and yet I'm alone.  It's hard, its a struggle, and let me tell you that every minor relationship issue feels greatly exacerbated when you can't see the other person's face when you're hashing things out.  So its both OK and not OK at the same time - and right there I am reminded of the twofold nature that I try so hard to embrace.  Life includes both joy and pain, and so this is just a natural part of being human. 

The other thing that changed is that my ex and I changed our parenting schedule.  We went to every other week, a situation I wasn't entirely happy with but agreed to because it was pitched so reasonably.  I have a friend that's a judge.  He says most parenting plans are like this and they don't like complicated parenting plans when you go to court.  And really, it makes more sense to limit that number of transitions they have to deal with, especially with our mixed bag of mental health issues.  It took a while, though, before I realized the real reason for it.  (When I figured out that our parenting schedule matches his girlfriend's parenting schedule and they are both surprise! kid-free on the same weeks, I had to draw a little +1 in his column in the imaginary scorecard I keep in my head.  Touche.  Nicely played.  Asshole.)  So before, the last the longest my kids slept somewhere other than my house was two nights in a row.  Its not all that bad, considering.  On the weeks they are with their dad I still pick them up after school until he gets off work.  I still get to be involved in dinner and homework and all the chaos and noise four evenings on the off week.  It helps tremendously.

Sunday afternoons are special.  I savor those last few hours with them, even if we're doing mundane things.  Yesterday we went up to Michelle's and spent horse time.  The drive is a little over a half hour. 

As we drove home, the light was beginning to thin.  My daughter laid her head on my shoulder, and grabbed my free arm to wrap it around my shoulders.  I hugged her, ruffled her hair, touched her soft cheek with my fingers. 

There are moments in time when loving my kids is both the sweetest and most painful thing imaginable.  I am awestruck once again by how incredibly fortunate I am to have these mysterious and quicksilver beings in my life.  I love them completely and without limit, and I know that our time is precious because it will too soon be less available.  They are with me for but a brief span of their lives, and they will drift further and further away from me as they learn how to be independent people.  They will still be mine, in my heart of hearts, but more than that, they are their own.  So I hold my daughter's hand in the car for as long as she will let me, squeezing it gently, savoring the sensation of her fingers entwined and our palms - hers soft and warm, mine calloused and hard - pressing together.

These are the moments I pull from my memory banks to hang on to when the night is dark.  They are the bright light that chases away the shadow. 

This winter will be better.

I hate talking about this

Another blogger had a post up last week questioning whether cultural norms had influence over the public behavior of children.  She noted that when driving through her suburb she couldn't help but notice that the children of some families who were - how do I say this the right way? - not white- were better behaved in public.  Aside from my distaste for the extreme overgeneralization about culture and how it is that you can identify simply from the color of a person's skin whether they've been in the You Ess of Eh one, three or ten generations (don't get me started, really.  To quote David Banner, you won't like me when I'm angry.) what really put the burr under my saddle pad was the smug tone of many of the commenters who had really well behaved children in public and of course that was the result of their fabulous parenting skillz.  And they all had anecdotes about seeing other parents who were clearly Not Good Parents because, well, you know -- THEIR CHILDREN DID NOT BEHAVE WELL IN PUBLIC.   Because CLEARLY, if your children don't behave properly in public YOU ARE NOT A GOOD PARENT.

So by this assessment, when my bipolar ADHD (and one with sensory processing disorder) children managed to sit quietly through an hour and a half long mixed English and Spanish with a confirmation thrown in Catholic Wedding, I am an EXCELLENT PARENT.  And when I took my kids to the grocery store and my son wouldn't stop running and shouting alternated with crying and begging for a hot wheels car, I was a TERRIBLE PARENT.  Because obviously both of these situations speak volumes about my parenting skills, and my children's special issues, which are invisible to people who don't know us, have NOTHING TO DO WITH IT.

When people smugly assure me that their children are well behaved because they are amazing parents, honestly, I want to smack them.  I would like to see someone who has never in their life had to manage a child in the middle of a bipolar rage take both of my children and successfully manage a two hour shopping trip through Wal-Mart.  You'll get a very special prize if you manage to make it through the store without a fight, a tantrum, happy yelling, angry yelling or a complete on-the-floor screaming meltdown.  Or all of the above.

Look, there are days when my kids do great in public.  Sometimes the stars align, the angels sing, God smiles down on us from heaven and the lions and the lambs lay down together in perfect peace.  We go to the store, we go to a birthday party or family barbeque and they have a good day.  We have a whole day where my kids don't try to kill each other.  We have a day where no one loses their shit.  Those days DO happen, and isn't it great if someone who has never met me before and probably will never see me again meets my kids on those days?  Because they will just know that I'm a Good Parent.

But on the bad days...

Look, SG is a dad.  His son is grown now, but by all accounts, his son was a pretty easy kid to raise.  He is great with my kids - he doesn't lose his temper, he never yells, he doesn't get all bent.  He's Mr. Calm and Easygoing 99% of the time.  He's not excessively permissive, he doesn't reward poor behavior and he expects good behavior.  Even so, if we are at the store and he is with us, there is no guarantee of good behavior.  Expecting my children to behave perfectly all the time is absolutely impossible.

So.

I have two points I wish to make here, and they should be obvious, but clearly according to the folks over at this other blog they are not, so here we go.

1.  Good parenting sometimes has very little to do with good behavior.  I have good kids, they are loving kids with a social conscience who want to please their parents and do the right thing.  They are also children with multiple diagnoses and invisible illnesses.  It is impossible for them to be perfectly behaved all of the time.  One of the hallmarks of a bipolar is the inability to modulate their voice.  I know bipolar adultswho still haven't figured out how to keep their voice from rising dramatically in volume when they are in a manic phase.  Children with ADHD are at times unable to manage their physical energy, and ADHD meds are time-bound.  They often don't last until dinnertime, and frankly sometimes on weekends I don't give them those meds because when they're not in school, the focus isn't a hard requirement and I like to give them a break when I can.   You CANNOT assume that a poorly behaved child is simply a little asshole and the result of piss-poor parenting.  You can't.  You can't see autism.  You can't see bipolar.  You can't see ADHD.  You can't see Aspergers, or Sensory Processing Disorder, or RAD or Tourette's or any number of childhood illnesses that originate in the brain and don't result in a pure physical marker that easily identifies that this is a child coping with illness.  YOU CAN'T.  So stop being an asshole and judging me and my children in public, 'kay?

2.  Similarly, you cannot, when driving by a family whose skin is a different color than yours, without actually stopping and talking to that family and asking them a lot of personal questions (which are none of yo' bidness) determine whether they are culturally acclimated, whether they have lived in this country for a short period of time or were born here, what parenting techniques they employ with their children and whether the culture you are assuming they come from is actually the one they are from.

I have found over the years that there is a wonderful community of parents on the Internetz who have kids a lot like mine, who don't overgeneralize, who support and console and cheer for one another, and who, when they are driving through their rich neighborhood or shopping at their local Wal-Mart, make no assumptions about children or parents by the behavior they witness.  When they see a frustrated mom coping with a screaming kid, they are more apt to give her a smile or a sympathetic glance - or even to put a hand on her shoulder and say "I'm sorry you're having such a tough day, I know its not easy." 

I have also found that the Internetz are chock-full of smug know-it-alls who lead Perfect Lives and have Perfect Children and are basically assholes.  Because you don't have perfect children, you are an inferior parent.  Their children are well-behaved, ergo they are Better Than You.   Eventually you get to a place where you can mostly discount them as ignorant, but occasionally you will have to write a long, pissed-off epistle of indignation just to get it off of your chest. 

I feel better now.

Making sense of this

Today I took a shortcut to work, up a gravel road through the hills.  At the tip-top of the hill, where you can see miles and miles of farms and houses and hills and rivers, cars on the highway and cows grazing in the pasture, at the place where sometimes lovers park at night and where hikers climb during the day and where hawks carry off small rodents and snakes burrow and coyotoes and foxes move about in pursuit of their daily business, at this place I found something terrible.

A car, parked.  A body on the ground behind it.  Someone I do not know, someone cradling a shotgun in his arms, the life already gone from him, hat on the ground a few feet away.  I did not see his face.  I did not want to look that closely, because the the moment I saw the gun, I knew I couldn't look any closer.  Some things do not need to be seen to be understood.

I notified the authorities and waited for them to arrive, to begin the business of documenting the details of this man's passage from one life to the next.  Facts, lined up like books on a shelf.  Name, address, date of birth, next of kin, cause of death, time of death.

But these facts will not tell the story of the person who was laying on his side on the hard, dusty ground up in the horse heaven hills.  They will not describe what thoughts went through his mind, what scenery his eyes beheld, whether he cried, whether he prayed, who it was that he thought of in his last moments with love or with hate or with despair.  None of that will be known to any of us.

Somewhere today someone will receive a knock on the door from a sheriff's deputy.  They will be asked to identify the body of a man they knew, possibly a man they loved.  One man's life is over,  other lives will be changed forever.  Was he a father?  A brother?  A son?  Does he leave a wife or a partner behind?  What was the tragedy that drove him to the top of the hill?  What obstacle in his life seemed so insurmountable to him that he could not face it?  Who will mourn him now that he is gone?  Will they be angry with him for what he did? 

And now, on the other side of the veil, in that place we living cannot see or touch, does he know peace?  Does he see things differently?

This is not about me.  I am fine. 

He is not fine.  Or at least, he was not fine.  Now he is somewhere else, and very likely has left behind some other people who are also not fine.  Not okay. 

Suicide is not the act of a cowardly person.  Someone close to me who lost a loved one to suicide told me of the reading and research they had done to try and make sense of their loss.  They learned that a person's body will instinctually attempt to resist the means of suicide.  Every instinct we are born with tells us NOT to pull the trigger, not to swallow the pills, not to kick the chair out.  The body will involuntarily jerk away from the bullet, try to keep breathing, vomit, struggle, even when the person who is attempting the suicide is dead set on taking his or her own life.  We want to live.  Even when we want to die.

When someone is living with suicidal ideations, there are patterns of behavior that are recognizable. 

They talk about suicide or about death.  A lot.

They say "I wish I were dead" or "The world would be a better place without me,"  or other expressions of how they feel their lives are meaningless, hopeless.

They isolate themselves from friends, family, coworkers.

They start giving things away, even things that really mean something to them.

They stop taking care of themselves, their homes, their appearance.  They may show a marked drop in productivity.

There is no way to know for sure if a person is suicidal, but if you know someone who fits these criteria, now would be a good time to offer your love and support.  To help them know that someone cares, to encourage them to take steps to getting well, like seeking medical or therapeutic help.

I took a shortcut through the hills today, and I saw something that makes me want to tell you something important.  I want you to know that if you are not fine then can call someone who loves you.  Or if you can't think of anyone to call, then call this number and talk to someone who is on the other end of the phone because they care about you and they want to help you:

1-800-273-8255

National Suicide Prevention Lifeline

He was not a statistic.

I don't know anything about him, but I know that he was a person and I wish I had a chance to tell him that before he pulled that trigger.

 

 This post was syndicated at BlogHer! 

 

Empathy

One of the bloggers in my daily reader blogged about a rough day in public with her son, who has autism.  While I hate to read about another mother's struggle, I simultaneously crave reading about those difficult days if only because it helps me feel less alone, it helps me feel less panicked and less anxious about the bad days that my kids have.  Sometimes I wish my arms were long enough to reach around the world and just hold onto all the moms of children with disabilities and differences.  They are My People, my kith and my kin. 

Whenever I'm in a public place and I hear a toddler making that peculiar grunting scream of the bipolar child, or I see a mom struggling to hold it together while her child melts down for the umpteenth time,  I just want to run over to her and put my forehead against hers, share through osmosis all of my empathy, my own experience, what I know of other moms just like her and what I know about her simply because I have been her, too.  I suppose it goes beyond special needs, because God knows that parenting is hard sometimes, even when your kids aren't struggling with issues.  But for those parents whose kids have disabilities, visible or invisible, every tough day is especially grueling.  We know that it is not the last day we will have like this and we hope we don't have another one like it very soon.  And when it does happen soon, we are stretched thin as paper with the tiredness of doing this one more time.  And when it doesn't happen for a while, we get cocky and we assume things are better, until the next bad day slams shut on our fingers and says to us "Oh, no, you're not getting out of it THAT easy."  And then we panic some more because if things are indeed not getting better as we had hoped, where then are they getting?  Is there worse?  Can we handle worse?  Is there something different, something new and unexpected?  And how will we cope with it?  And cope with it we do, because we have learned that there is nothing other to do BUT cope.  Some days we cope exceptionally well and other days we seem to have lost the limited coping ability we were counting on to get us through; nonetheless, we cope.

We get to the point where days that to another parent might seem fearfully chaotic and difficult are actually quite good days for us, because nobody got hurt and the tears were relatively mild in comparison to the bad days.  The tantrums were fewer, there were no calls from school.  There is always a reminder that the illness is there, even when symptoms are quiet.  Daily medication is a daily reminder of just why it is needed and how important it is that it is ingested in order to ensure that school does not erupt in flames and that sibling interactions will be somewhat less bloody than they would otherwise be.

There are days when I want the moms who have raised children like mine to adulthood to come and place their forehead ever so gently on mine and pass along to me all the wisdom of their years, to show me how they have continued to place one foot in front of the other, continued to gently love their difficult children, continued to smile and hug and enjoy - and cope.  To prop me up with their empathy and their understanding and the energy to do this.

There are days when I wake up my children and the first thing I get is an arm wrapped around my neck and a cheek nuzzled up next to my own, with a morning-breath whisper of "I love you mommy."  There are days when I go in expecting to wake up children and instead finding that I am trying to rouse Honey Badgers from their dens.  There are days where just like Varda, I leave a big chunk of my heart lying on the floor of the playfield or the grocery store or the church, because as I have maneuvered my melted-down child off into the car, I have died a small death from being stared and and in some cases thought poorly of by people who think they're looking at an undisciplined child instead of one who is ill.   Oh, I relate to that. 

The good days, the bad days, they come and go and we keep getting by.  I hope all the other special needs moms in my life, the real-life ones, the bloggers, the Mama's forum ones, I hope and pray you all know just how much I love you and how much I depend on you being there to share your triumphs and tragedies with me.  I hope you know how much I love your special kids, how much I enjoy reading about how much YOU love them and how special and unique and precious each of them is. 

Come here, and press my forehead against your own.   See? 

That woman was out of her everloving mind

 

 

 

"You know, a spoonful of sugar makes the medicine go down, in the most delight-ful way!"

I call bullshit on you, Mary Freaking Poppins.

His liquid medicine goes in chocolate milk.  With a straw.  Every day a straw, like a special occasion.  Three tiny little milliliters of medicine, a cup or so of chocolate milk.   His capsule full of little round white balls of helping you focus gets poured into the middle of a spoonful of chocolate pudding and then covered up with more chocolate pudding.

You can't taste the medicine.  Trust me, I've tried it myself just to make sure.  And this kid loves chocolate.  You would think that getting to have chocolate milk and chocolate pudding every single morning of your life would be all like WHEEEE, AWESOME! CHOCOLATE! for a six year old boy.

Not my six year old boy.

I guess the official term is "not medication-compliant."  I've begun to think of it more as  holy hell you stubborn little turd, take your freaking medicine already, i've been trying to put it in you for half an hour and i'm out of patience and late for work and out of things to take away from you and you know some children have to SWALLOW PILLS or TAKE SHOTS to get THEIR medication fercryingoutloud, and all you have to do is EAT CHOCOLATE FOR GOD'S SAKE and oh my god i'm going to LOSE MY MIND.

Is there some point at which this actually becomes funny and we can tell stories about it at his wedding?  Because right now it is NOT FUNNY AT ALL unless I pretend its happening to somebody else.  In which case it would be funny, so naturally I forgive you for laughing at my pain.