My friend Emma Christensen who works for the Kitchn as an editor (and previously as a food writer) has her first book out and it’s filled with recipes for brewing all kinds of beverages and I just received my copy!  We got a free copy because Philip tested the plum wine recipe.  We drank it pretty young but it turned out great – really dry – which is how I like wine.  It was “rough” because we didn’t give it the time to mellow but if you make a plum wine and it’s drinkable and enjoyable before it’s even matured properly?  Total winner.  The recipe was easy to follow and it worked in spite of Philip making some minor changes to the method.

This book is gorgeous and full of completely new takes on many beverages like kombucha (I really want to try the hibiscus kombucha) as well as including plenty of unadulterated classics.

When I was really depressed last year, and broke, Emma sent me a care package of lemons she picked from her apartment building and bottles of her home brewed beers.  Her beers were fantastic.  It was such a cheering present to get and I’m sorry you don’t all get boxes of her beers – BUT – they’re all in her book!  So you can make them for yourself.  She lives in an apartment – so you can’t make excuses like you don’t have the room.  This is all small batch home brewing that is completely doable whether you are in a small apartment or a ridiculously large house (like we used to live in).

Emma, incidentally, was one of my Cricket and Grey readers.  That has nothing to do with her book.  I just wanted to say that because she’s been a major Angelina cheer leader for years.  Anyway – if you want to try brewing some festive beverages at home – this is THE book to help you do it.  You can trust Emma.  She is also the creator of the best homemade hamburger buns in the world.

True Brews is available on Amazon!

I am going to reprint this post on Stitch and Boots later in the week.  I can’t do it right now because I just published the announcement for my pajama pant sew-along and I want that at the top of the blog for a few days.  So when this shows up on Stitch – you’re not imagining things.  I just really want everyone to check out Emma’s book.  I’m so proud of her for creating something so amazing!

Ahh – meat.

*Mother Fucking God Dammed Whore-Faced Git and Go Fuck Yourself You Son of a Bitch*

Apparently I am the Universe’s bitch.  And I just found out it’s into bondage.

This sums up Monday through Thursday adequately.

The last breath that threatened to blow my house down was finding out that Bill Hader is leaving Saturday Night Live.  I am devastated.  Heartbroken.  Desolate.  Unbeknownst to him, we are Cuckoo-eyed twins.  I love his teeth.  I love his comedic genius.

Never-the-less: It’s all going to be okay. Maybe not today. Maybe not next week, but eventually and for a few days. And then it will all fall apart again. Life ebbs and flows. The light never stops giving balance to the dark. So it’s going to be okay again for a while when it stops sucking. Word.

While Tuesday was a hatchet-faced whore, Wednesday (traditionally an adversary of mine) has somehow sprouted wings and possibly saved Thursday and Friday from complete annihilation.  The bad persists in that Philip was home for a third day in a row – and he’s a man who is rarely stopped by sickness (turns out to be Labyrinthitis) and Max came home from school with a horrid sore throat.  I’m already wicked tired so I was ready to consign Wednesday to a napalm cocktail when it suddenly redeemed itself kind of late in the day.

First – I went to get popsickles for Max to soothe this throat and because I could and because I needed to do something unplanned and fun I rode my scooter through the warm air to the Asian market where I spent a good hour locating a mere 4 items on a list of things a couple of friends might enjoy receiving in the mail.  I find it exciting and simultaneously calming to shop in Asian markets even though there’s so little I can buy for myself in them (so much fish and meat) but the jars and boxes and packages of dried things entice and fascinate and give great pleasure.

Second – when I came home Max came downstairs in all his painful misery to watch something on “television”.  He could have done that upstairs so I knew he wanted to be near his parents.  We watched a couple of episodes of Bob’s burgers and then I suggested we watch the first episode of Arrested Development because it’s been my quiet plot to get him to watch it for a while now knowing that it’s exactly the kind of humor he would enjoy.  He agreed.  I was surprised and pleased.  We started watching and immediately he was sucked into it as I predicted he would be.

Third – in the middle of watching the first episode of Arrested Development Max said he was hungry and asked if he could have a veggie burger with lettuce on a hamburger bun.  People – I have been making many batches of whole wheat hamburger buns in the last month but I had none on hand tonight.  I offered him egg toast or sugar toast but he drooped in that disappointed way that kills me when his disappointment is because I don’t have the makings for something he wants to eat that I would consider a major triumph.  He wanted a goddamned veggie burger and I was unprepared.  Because that’s how it happens all the time.  I asked if I should go out and acquire buns for his veggie burger and he lit up.  Lit up – for a fucking veggie burger.  He wanted it with LETTUCE.  No lie.  So I went to acquire some buns.

The only kind of buns available of an acceptable uniformity and lack of messy seeds or bran on the tops are pure white hamburger buns.  White and nutritionless shite.  He loves whole wheat but he loves uniformity and wrinkle-less bun tops more.  If this is the vehicle available to deliver to him some lettuce and mushrooms and grains – I know my place in the universe.  I’m going to get on my damn Vespa and cruise off to the store because I’m its bitch and it likes to punish me.

Whatevs.

There are many ways my efforts could have been rewarded.  With complete failure – like the kid requested the veggie burger but once in front of him he changes his mind.  The bun is wrinkled.  There is some speck of weirdness on the food.  Or he could eat it and enjoy it.

Tonight he ate 3/4 of a veggie burger on a white bun with ketchup and mustard and two pieces of romaine lettuce.

And he loves Arrested Development.

I have stopped playing nice with the school, incidentally.  I have a true and deep respect for public education and for teachers especially but it is not serving my child in any way right now and it is, in fact, detracting from his learning.  I have opted for more plain speaking and bald honesty in dealing with his school because being careful and politic has served me not at all.  So I’ve become the desperate pain-in-the-ass parent I never wanted to become but I brought Max into this world and that makes him a huge priority and being liked by others is never going to take precedence over meeting my child’s needs.

So fuck it all to hell.

I feel like a soldier a lot of the time.

I’m soul-tired.  But it’s okay.

My triumphs are very small.  I take them with gratitude.  My son ate some lettuce today.  He became a fan of Arrested Development.  If the apocalypse arrives tonight I can handle it.

*********

And here it is Friday – FINALLY – and it feels like fucking Sunday.  I wanted to icepick Monday.  By Wednesday I wanted to Napalm this week.  By today it’s become clear that the only way to deal with it is to nuke* the fucking stuffing out of it.  Too many things I’m not at liberty to discuss at the moment – but believe me – if I could I’d spill the whole fucking show for you.

Max has been home sick for 3 days this week.  Philip has been home the whole week.  I’m not awesome is all I have to say.  Except for the part where somehow I managed to make three veggie burgers for Max that he ate and loved.  Last night he wanted to know if he wouldn’t like some vinegar on his next veggie burger so I gave him a little taste of red wine vinegar and balsamic.  He liked the balsamic.  Today he wanted me to drizzle some balsamic on his caramelized onions…

————- let that sink in – picture that shit ————-

Dude liked it.  Except for the part of the bun where I accidentally dripped the balsamic on the bun in a dark splotch.  Kid doesn’t eat dark blemishes on his hamburger buns.  But he just ate a gourmet veggie burger today.  My extreme picky eater.  I know the score – this is going to devolve again into 2 weeks of nothing  but round crackers.  But this – this thing that’s happening – this is a glimpse into a future I have been believing in forever.  Max has the makings of a connoisseur of the things he likes and if only I can stretch that palate he could become a true gourmand in his adulthood.  If only I can maintain the patience not to get angry when the only thing he’ll eat for days is cheese puffs and sugar toast.

I have been developing a relationship with that patience for years.

All day I worked on organizing my kitchen and it feels great.  And then I did all my filing.  And though the things that were bad this week have not vaporized as I demanded them to – and have the potential to be devastating in the near future – I am seeing the good in the disaster.

Like when your skin doesn’t melt in an atomic blast and you’re all “Oh yay!  I might starve to death but at least I’ll starve to death in my actual skin!”.

I will close the week day war with this gem:

Max made up a song he thought was hilarious featuring men putting their wieners in pies. I asked him how he knew about the movie “American Pie” at which his eyes bugged out of his head “There’s an actual movie where someone puts their wiener in a pie?!?!” Proof that “American Pie” was written by a 12 year old.

*Someone else pointed out that napalming had become inadequate and suggested nuking and I couldn’t agree more.

Some days are made to remind you that ice picks have a long and infamous history of extra uses.

I’ve got a husband who stumbled home today at noon with extreme dizzy-ness with an improvised barf-can taken from work where he actually vomited up all his coffee and water.  Much speculation has ensued as to the cause while he has remained supine and intentionally blind.

It was hot.  A double sin in the Angelina book of good rules for the earth and people and sun to follow.  I live in an inferno – so this is to be expected about 8 months of the year.  Still, 82° is not my friend even though that’s so much less dire than, say, 115°.

It seems I am either having random hormone flushes consistent with peri-menopausal FUN or my meds aren’t working so well or I’m just a full time BITCH now because I want to strangle people today.  And yesterday.  But it’s impossible that I’m PMSing because I just finished my period last week.

My child hates his new gym teacher.  The honeymoon is over.  She made him feel bad and almost cry at his locker because he often needs people to repeat things and she has (allegedly) accused him of just not bothering to pay attention.  Apparently his math teacher hates him too (according to him).  His grade has dropped to a C- because I have been timing his homework sessions and she is not giving him full credit for the homework he finishes.  Which she’s perfectly in her rights to do.  But Max feels like crap that his grade has dropped.  Given a choice, though, he says he’d rather have the timed homework than not.  We are having irreconcilable issues between his needs and school rules.  There were tears.  There were fears.  Shit, sorry, I can’t help it if things rhyme and remind people of groups from the 80′s.

Then I compounded the sins of the day by informing my sweet son that it was shower night.

But none of this addressed my main gripe today which is that CVS is the most outrageously overpriced mecca of CRAP and I always manage to arrive during the shift of the slowest most manicured elderly lady I have ever met.  There was a four person conference in which I explained what was ailin’ Philip and explained that I wanted electrolyte tablets (back in the early afternoon when Philip still thought he was suffering adversely from an electrolyte imbalance brought on by a 189 extra miles bicycled last week) and the CVS pharmacist explained to the woman phoning him from the front of the store that even if they had the tablets (they didn’t) they were likely to irritate Philip’s stomach further which might cause more vomiting.  So the elderly manicure tries to convince me to buy their Pedialite suckers.

For a man who is 6’2″.  Fucking electrolyte lollipops for babies.  If he was indeed electrolyte deficient – how many lollypops would it take to right the balance of a robust tall man if the lollypops are made for people under 4′ tall and weighing less than 70 lbs?

There’s a math word problem in there for anyone who’s thirsty for some numbers.

I tried to explain politely that I don’t take medical advice from people with scary manicures who are trying to convince me to buy suckers for my middle aged husband.  My explanations were met with expressions of great pity and concern and also the opinion that if he was vomiting up his liquids then it was pretty churlish of me to reject the lollypop cure for more liquids which will almost certainly cause more vomiting and make me the WORST WIFE EVER.

When 3 or more people in any given store get involved in a discussion with me over what I’m looking for I can’t leave the store without buying something even if they don’t have what I’m looking for.  So I debated uncomfortably over the precious cost of 2 bottles of Gatorade that is cheaper to buy anywhere in town that isn’t a CVS.  I felt my intestines turn and bunch up because I really didn’t want to spend so much money on neon shite when I could be sending all that extra money to the IRS to get those pimps off my shoulders.  I could have just bought one Gatorade for $2.50 (a scandalous price) but I couldn’t fathom using my debit card for less than $5 so I lingered like a sociopathic ghost around the power-drink shelf until I decided to check out their sunscreens for Philip.  This caused me to have a minor stroke because they have only good prices on things if you have one of their cards – otherwise you have to pay through the teeth just for their store brands.

It’s a major racket.

All this milling about scrambled my already irritable nerves.  I finally decided on getting two Gatorades and then had to deal with the mournful discourse of the manicured lady.

I also bought a bunch of asparagus at Whole Foods for $7.88 because I was already undone from the anxiety and anger cocktail CVS dished up.  I better fucking like my precious asparagus.

I need a vacation from my life.

I need a vacation from myself.

The last few days I have not enjoyed being me.  I’m feeling itchy in my skin.  I’m not meshing with anyone around me – everything everyone is saying is making me feel wrong, like a freaky old Bukowski character with boobs (but less nude).  Why the fuck are so many people enchanted with*: babies, balloons, holidays, FUN, live concerts, music I hate, children, religion, parenthood, bacon, stupid diets, dogs, sunshine, fast cars, big cars, big houses, agapanthus, GAMES, Las Vegas, purebred anything, desserts, clowns, 6″ heels, sex, precious lifestyles, image, innocence, youth, porn -

Know what I’m interested in?  Okay, since you asked: what old women are wearing, roses, playing favorite songs on infinite repeat, tomatoes even though I suspect they are giving me heartburn, old people, middle aged people, vintage stoves, nettles, this question: where the fuck did Bukowski go when he died?, seeing my kid grow up, the “Thriftstore” song, watching ghostly mushrooms pop up in my herb pots, packing tape, chickens, crows, pigeons, swearing, people who never have kids, boots, life without charades, and card games that burst into flames.

Some days need to be icepicked in the cornea.

*The gist of this segment of this post is to express chagrin towards myself, not at others.  The question I’m fairly shouting is “WHAT THE FUCK IS WRONG WITH ME THAT I DON’T EVEN LIKE SUNSHINE?”  and not that you all shouldn’t like sunshine.  I feel grouchy and ogre-ish for not liking or being interested in what are obviously wonderful things to most of the other people I know.

Motherhood isn’t a religion.

Mothers aren’t by nature the most selfless people on earth.  I have met many mothers as selfish as misers.  Mothers aren’t better than other people or more pure than non-mothers.  I can’t stand hearing people talk about motherhood as though it automatically elevates you to some higher status than non-mothers.  I can’t stand it when women (or others) rhapsodize about the beauty of motherhood, the selflessness and nobility of giving birth to babies and raising them.

I can’t stand it when people fetishize anything.

And people love to fetishize everything.  Motherhood, diets, sex, clothing, shoes, art, people (celebrities), careers, power, money, sunshine, beauty, objects, spirituality.  There is literally nothing humans won’t turn into an unhealthy obsession.

There is no bad moment to tell your mother you love and appreciate her.  There is literally no bad day to tell anyone in your life who has been kind and good to you that you value them.  No one needs a nationalized day to remind you.  Or at least you shouldn’t.  I always give my mom some appreciation on mother’s day because it’s expected and if I didn’t she might feel left out.  But I show my love an appreciation to her often and without any prompting because that’s what you do for those you love and appreciate.

I’m a mother too and as far as I’m concerned it’s okay with me if Max never does anything for me on mother’s day because it is meaningless to me.  What is meaningful and poignant for me is when Max tells me randomly how much he appreciates that I “let”* him just be who he is, my problem child, and that I don’t punish him for being different or challenging.  That – coming from my kid – is pretty great.

Being able to get pregnant and give birth to babies is nothing special.  All fertile humans can do it without even thinking which is evidenced by the high rate of unintended pregnancies that occur all over the world.  It takes no skills and no nobility of purpose and happens to every kind of person from the very best down to the most base and horribly unfit people.  I imagine this fact might add extra insult to injury for those people who desperately want children and can’t get pregnant.  As infertility becomes a  bigger and bigger problem among humans – the most you can say of being able to get pregnant is that you’re lucky to be able to do it on purpose, but being able to get pregnant sure doesn’t make you special and it has nothing to do with your worthiness as a potential parent.

I believe the fetishization of motherhood is backlash from feminism.  Women used to have babies not necessarily because they were dying to be mothers and that was their life’s ambition (though obviously there have always been women for whom this is their main desire) but because it was expected of them.  How many times have I heard older women talk about the days when all women were expected to get married and have babies even if they didn’t really want to?  Can’t even count ‘em.  But as the feminist movement picked up steam and power – many women started to view having careers outside the home as the new noble thing.  You CAN work outside the home so you SHOULD.  Women who finally felt free to nurture professional ambitions looked down on those women who really wanted to stay home and have kids.  Or stay home and no have kids.  Suddenly there were all these women who believed that feminism was about women freeing themselves from the yolk of wifery and family and lost track of the point of feminism which was to promote women making choices for themselves.

Women pitted against women is stupid and just as destructive as chauvinism is to free choice and empowerment of self.

Now my generation of women has taken motherhood to a new level of competitive sport.  Different parenting methods and philosophies have become warring religions and women rise up and call other women “abusive” to their children when what they really mean is “You’re not doing it like ME” and somehow having kids now confers a golden halo of light around you that makes you more worthy of any non-childbearing women.  That’s fucked up.

Motherhood may be challenging but so is being the CEO of a fortune 500 company.

Choosing motherhood is NOT a selfless act.  Having  babies is, in my opinion, the single most selfish thing a woman can decide to do.  This wasn’t true in the middle ages when there were a hell of a lot less people on earth.  They died off in plagues more frequently and devastatingly and there were seemingly endless natural resources.  Chances were good that if you had kids – half of them would die by the age of 5.  So having kids, and having as many as you wanted or could have of them had very little impact on anyone but yourself and your family.  But this isn’t the middle ages and there are billions of people on earth and limited resources.  Every single baby you give birth to (mine included, obviously) is a selfish act in which you bring another being to life who will take more resources from the people already here.  It does not matter how much you recycle or reuse things or how small your carbon footprint is – your children will need water and air and they will shit into toilets that will fill either holes in the soil or sewage systems.

And that shit doesn’t make good fertilizer.

Your child will compete for jobs, housing, land, money, partners, oil, power, not only with other people’s children and older people who are losing opportunities to the young every day but they will also compete with your other children for all those things.  Every time you bring another kid into the world you are taking another chunk of limited resources for the sake of your own satisfaction.  For your own selfish desire to have more kids because it pleases you.

I am not here to say anyone shouldn’t have kids.  And obviously if you have kids I hope you do your damnedest to be a great parent to them because you’re the reason they’re here and none of them asked to be born.  But don’t, for fuck’s sake, suggest that anything about having children makes you some kind of hero or selfless.  So have your kids – as many as you see fit – but don’t imagine that you are doing the world any favors, because you’re not.

It is far less selfish to choose not to have children.

I personally went the selfish route and had my baby.  I don’t regret it for a second and I love him best of all people in the world.  But I sure as hell didn’t do any of you any favors by having him.  Even if he becomes a person who changes the world for the better.  Even if he really does do something heroic.  I’ll be able to say I nurtured the good in him – but if Max grows up to be someone fantastic that other people are thankful for – I won’t have ME to thank for it.  Max will have himself to thank for it.

That’s the other great myth that I can’t stand.  We place so much importance on parenting – as though bad parenting will result in bad people and that good parenting will result in good people.  Every child that parents bring into the world is an individual and while you can certainly break people with abuse – the fact that there are many people who come from abusive childhoods and go on to do great things and be great people is proof that no matter what kind of parent you are – ultimately the child you gave birth to is their own person who has responsibility for their own choices and there are a million factors that can contribute to who they ultimately grow up to be.  There are also dedicated loving parents whose children grow up to murder people, steal, or just become douchecopters.

So when Max grows up and becomes what he becomes I will not be congratulating myself nor hating myself. I will either be proud of the choices he’s made or I’ll be sad about poor choices he’s made.  He is not clay in my hands that I have the ultimate power to make into a good or bad or mediocre adult.  A lot of who he will become has to do with who he came into this world being.

My job as his mom is to do the best I can to set him up for success and as far as I’m concerned – being a “good mom” is about being there,  being present as much as I can and meeting my kid’s needs while still living a full life as a woman whose life ambitions far outreach the scope of motherhood.

If motherhood is your main ambition in life – go for it.  Be a mom.  If it’s what will fulfill you as a person – then I support you doing it because I support women choosing the life that will best fulfill them.  Whatever it is.  If you want to have kids but also pursue a professional career – do it.  Make the best of it that you can.  If you don’t want kids at all – thank you – you’ve done a kindness for the earth and for the people who are already fighting for its resources.  There’s room for us all to make different choices.  The choices I have made are not superior to the choices anyone else has made.  And your choices are not inherently superior to the ones I’ve made.

I want to see women support each other in the full range of choices available to us and I want to see women support each other in the full realization of our individual gifts.  The world needs women taking part in all aspects of civilization and it should be our guiding light to help each other find and use our gifts – whatever they are.

To do that we must stop fetishizing our life paths.  Stop making our choices into religions or cults.  Stop fighting each other over the “right” way to parent children or the “right” kind of job to pursue or the “right” kind of relationships to develop.  Stop fighting over what life choices are most noble or righteous or beautiful or magical or fun or fulfilling.  We’ll never agree and it’s okay.  That’s the beauty of it.  We don’t have to agree with each other all the time – we just need to respect each other.

I had a lot of other things to say about mother’s day and motherhood but Anne Lamott got there first in her article called “Why I Hate Mother’s Day“.  I don’t actually hate mother’s day but otherwise she basically spoke my mind.

Mostly I just want people to be real.  Honest and real.

And to keep things in perspective – especially if my views anger you or hurt you in any way – remember that I do not think human beings are all that awesome.  I believe we are the worst virus this planet has ever had inflicted on it.  I think ants are more valuable to the ecosystem than human beings.  I think the worst dog has a more pure heart than the best human.

So there you have it.  I think us humans need to stop thinking so highly of ourselves as a species and make ourselves worthy of the space we’re devouring on the planet.

*As if I could make him be anyone else.

The internet is flooded with video snippets of your extraordinary story and the inimitable way in which you tell it.  People are laughing.  People are gaping.  People are surprised out of their usual stupor as much by your heroic actions as they are by your unscripted news interviews.  You are an original.  Honest and real.

What I love you most for is not walking away from someone begging for help.  I am haunted by stories of bystanders witnessing rapes, murder, and other crimes and not lifting a finger to help.  Stories of apathy and fear, however understandable, that result in so much continued pain and suffering.  You are the person I hope I’ll be in someone else’s moment of crisis.  You are the person I hope my husband will be when someone screams for assistance even if I’m waiting impatiently for him at home.  You’re the person I hope my son will grow up to be – to have that instinct to help other human beings in desperate need.

Four people have been freed from captivity because of you.

I doubt I’ll ever be able to say the same thing about myself or anyone I know.

I have few heroes.  You are one of them.

Gandhi.  Martin Luther King Jr.  Schindler.  Charles Ramsey.

Once you remove ADHD from the table over which this question is hovering “Why is my son so different and what do you call it?” there are a few distinct possibilities left to explore.  Two out of three psychologists seem to think Max’s OCD-like behaviors point more towards personality based issues rather than brain based.  One mentioned Sensory Processing Disorder and the other Non-Verbal Learning Disorder.  Both of those disorders do explain quite a few of Max’s quirks and challenges the way ADHD also explained quite a few of them.

Max’s current psychologist explained the diagnostic process and goal to me as looking for patterns of behavior and matching them up to known disorders as closely as possible, weeding out the ones that don’t fit as well until you narrow it down to the disorder that explains the most.  It’s certainly a complicated process and complicated even more by the fact that many disorders have things in common – so you have to pick through them weeding them out by their key differences.  So last week when Max definitely and clearly did not meet the criteria for ADHD in testing – I knew I was going to have to do a lot of reading about SPD and NVLD.

I started reading about NVLD and it definitely explains more than the ADHD but a question kept nagging at me and then I read this post that pushed me to read about Asperger’s Syndrome and Autism.  Two things finally leaped into full view: the fact that for years people have asked me if Max has Asperger’s Syndrome (starting with a super close friend who’s known him since birth and knows someone with Asperger’s) and the fact that every time I read an article written by parents about their autistic children I feel this great rush of relief that someone knows what I go through and I think this “You may as well have just written about Max, except that he doesn’t have autism!”

How many times can you think that and have that realization that Max has so much in common with autistic children and not ask if he’s mildly autistic?  In fact, I DID ask his first psychologist and he ruled it out immediately and his explanation seemed really strong and reasonable so I never looked deeper into Asperger’s or mild autism*.  Had I done so I would have challenged him on his swift dismissal.  Everything is complicated by the fact that people can have both ADHD and autsim or ADHD and NVLD.

I am plagued with people who all along this way have insisted that Max is a perfectly normal little boy.  Implying that I’m just a weak-ass mother who can’t handle having an intense child.  All of his special needs frequently get put down to bad or weak parenting in which I am coddling him and “allowing” him to make me into his slave and he gets what he wants and is generally just spoiled.  If he does things that make people uncomfortable and seem rude – it is implied that I’m not cracking down on my kid enough.  What’s really needed is a good old fashioned dose of my iron will breaking his down.  So my kid is normal and I’m just a weak parent.  Which is bullshit.

Here’s what I think has been missing from all of our visits to psychologists: it has all been focused on his challenges at school which some years are horrible – teachers putting up their hands and saying they can’t do anything more to other years where we feel stupid for having gotten all pushy about getting help because he’s doing so well (like this year).  But no one has ever really asked about his home life and his social life more than superficially.  “How does he interact with other kids at school” does not answer the important question of how he interacts with kids he actually calls his friends.  It’s all focused on how his behaviors might be causing other kids problems therefore requiring intervention and a diagnosis.  But what about how he interacts with people in general?  How about asking for the long history of his developmental stages, where he’s fallen short or where he’s excelled?  Why haven’t they asked me more about his sensory issues which are clearly a HUGE IMPEDIMENT TO HIS ABILITY TO FUNCTION WELL IN THE WORLD AT LARGE?

Because when you start asking those kinds of questions a whole different picture emerges.  The fact that he has rarely been willing to spend the night at other kids’ houses when he was smaller and that when he did he came home miserable and upset because their houses smelled horrible and there were too many kids and nothing was done “right”.  He just ended up refusing to try anymore.  Not just sleepovers but just going to other kids’ houses for a couple of hours.  He wouldn’t.  He stopped  being willing.  So he would only play with kids who came over to our house.  And there is the whole question of how he “plays” with other kids and how that has greatly limited his friendships.  He has a very narrow range of interests and is very obsessed with the few he has.  Everything he’s interested in is pretty much related to each other in some way.  He also doesn’t actually ever play with kids so much as he directs them.  If he doesn’t get to decide what they will “play” and decide the rules, he won’t play.  Friends drift away from him because most kids don’t find it fun to never get to make up games or change rules or go outside and run around.

Part of why these questions weren’t asked is because we came to the psychologist mostly focused on his issues at school.  But why didn’t anyone dig deeper?  It’s not like the only criteria for success is school life.  At home and outside of school he has struggled a lot.  Why didn’t anyone ask for a detailed history of his developmental stages and how he “plays” with other kids?  Why didn’t anyone think of Max’s extreme sensory issues as important enough to look into more deeply?  His sensory issues have impacted his life and ours negatively since the very beginning and they aren’t going away and they aren’t because he’s a willful brat with permissive parents.

ADHD and OCD only addressed these sensory issues in a superficial way.  Max has so much in common with people who have both these things so it’s easy to see how we could accept this probable diagnosis.  Once I started reading about AS and autism though – it was a revelation.  Max was screened for autism when he was 18 months old and hadn’t started talking yet.  The developmental evaluator was satisfied that he didn’t have it because he interacted with her very directly with eye contact and responding to her directives and understanding everything she said.  So I was reading the Autism Fact Sheet from the National Institute of Neurological Disorders and Stroke and found the differences between the early signs of autism and the later signs of autism keenly interesting.

Here is a list of the early signs of autism:

No babbling or pointing by age one – Max babbled and pointed aplenty.  Though many people commented on his intensity.

No single words by 16 months or two word phrases by age two – this is why he was screened for developmental issues – by 18 months he could only say “no” (of course) and “uh oh” which they didn’t really count as a two word phrase.  But he ended up saying his first 2 word phrase by 20 months.

No response to name – he knew his name and responded to it consistently except for when he didn’t feel like it (while tearing books off the bookshelves)

Loss of language or social skills – I don’t even know how to evaluate social skills in a 1 year old but by 2 I can say he wasn’t up to par with his other tiny peers in the social department.

Poor eye contact – not a problem with him.  He made plenty of eye contact and freely stared people down.

Excessive lining up of toys or objects – YES! BINGO!  Except on it’s own this is no criteria for autism.  But yes – this was primarily how he played.  Plus he had a morning ritual of pulling out all our video tapes and lining them up very carefully in a cavalcade – every morning.

No smiling or social responsiveness – not a problem.  Though he often had a very intent and serious face (hence people saying he was an intense baby/toddler) he was super responsive to games with mom and dad and sometimes other people which would send him into the best peals of laughter EVER.

So with those early signs he gave enough reason to be screened for autism but not enough to meet the criteria for further evaluation.  Really, he was just a little bit off from his peers developmentally.  Nothing problematic.  Well, except for the major major meltdowns and a whole lot of other stuff that could be put down to regular toddler stuff if it weren’t for the intensity of it.  And up until two I really didn’t see any of the sensory issues.  His picky eating started at 18 months but wasn’t truly severe until well into his twos.

But then I read the later signs of autism:

Impaired ability to make friends with peers – I think to outsiders he seemed fine.  But he only had one real friend and he frustrated most other kids he played with.  Play-dates required a lot of intervention from me trying to get Max to play other people’s games instead of trying to force them all onto his narrow agenda.  We called him “Napoleon”.  He was not invited to too many play-dates.  Our mode was to visit neighborhood kids often – just knock on their doors and see if they could “play” and our neighbors were all really awesome and tolerant and encouraged their kids to play with Max but it was not easy for them.  And Max didn’t ever notice if they weren’t excited to see him.  He loved older kids way more than kids his own age, still does.

Impaired ability to initiate or sustain conversation with others – Max has never had a problem initiating conversations with anyone.  He is very rarely shy.  He initiates conversations like mad and he can sustain them on his end for hours provided the conversation is only about what he wants to talk about and generally he doesn’t care if the other “participants” are actually taking part.  So – not great at sustaining normal conversations.  Not great at having normal conversations to begin with.  He talks AT people, not often WITH them.  If people try to steer conversation away from his topic he will relentlessly interrupt them and take it right back to where he left off.  This is uncomfortable for people and I spend a lot of time moderating conversations.

Absence or impairment of imaginative and social play – YES.  Max doesn’t “pretend” ever.  If he sword fights with sticks he isn’t pretending to be a pirate.  He doesn’t Make up games so much as he just makes up rules.  He plalys very literally.  He doesn’t make stuff up.  Mostly what his play consisted of was setting things up.  Train tracks, Hot Wheels, Legos and later on Bionicles and Stikfas – all of them he spent much time setting up for play but not really playing with them.  That was my job – to come in and race his cars or make his trains move and as long as I didn’t mess things up – this was amusing to him.  But all he really liked doing was building things with the legos but not actively play with them.  So YESYESYES.

Stereotyped, repetitive, or unusual use of language – YESYESYESYES.  Well, once he started talking he never stopped and his language and vocabulary became sophisticated for his age very fast.  His comprehension seemed exceptionally good too.  He used the word “irony” correctly in a sentence when he was 3 years old.  However, he mimicked A LOT too.  He still does.  He obsessively repeats parts of shows and movies that he particularly enjoys.  He still does.  Often he repeats those parts verbatim from memory but also when we’re rewatching his favorites he’ll repeat his favorite scenes right after they’ve happened sometimes 3 or 4 times WHILE WE’RE STILL WATCHING the show.  It’s really distracting and annoying and it’s hard not to shut him down.  Or try.  But he’s incredibly difficult to shut down.  He constantly impressed adults with his language skills – sounding more grown up than he was.  He still does that.

Restricted patterns of interest that are abnormal in intensity or focus -This one looks so much like the following one – I’m not sure how it’s meant to differ.  This is where it would help if I had a doctorate in this subject.  How does “patterns of interest” differ from “preoccupation with certain objects or subjects”?   I suspect this relates to the types of interests he has?  So the question would be are the types of things he’s interested in all similar?  I’m revising this post to say that I’m not sure this one is a match with Max but it sounds like it is.  I need more information on this one.

Preoccupation with certain objects or subjects – YESYESYESYESYESYES.  To the umpteenth degree!  Let’s see – his most favorite thing and subject and activity in the world is video games and he knows everything about the games he plays including things about the companies that make them and differences in their quality of work and he would like to talk about this to everyone all day long over and over and over neverending and people try really hard to be polite about his relentless pursuit of this topic.  He also loves graphic novels but only the few series’ he loves and though he loves them he really isn’t interested in talking about them.  The other subjects he’s obsessed with are zombies (zombie movies, books, and shows) and we enjoy this one with him quite a bit.  A favorite family activity is to map out our strategies for survival in a zombie apocalypse.  For Max the topic follows a script.  So the conversations don’t vary much from time to time.  He asks the same questions over and over “So which gun would you choose to have in a zombie apocalypse” and that’s the beginning of the game.  He asks it every time in the same way.

Then there are his “rants” as he calls them and they are also scripted – he brings them up especially when he’s upset even though these rants have almost nothing to do with the thing that upset him.  He will be complaining about the thing that upset him and somehow he’s suddenly having his favorite rant about religion, or abortion rights, or homophobia.  They are the same all the time.  He doesn’t often bring up new thoughts or ways of expressing them.  They are tapes he plays and recites in a particular way.  He doesn’t require you to take part in them but he does like it when people do.  A new one is that he’s now super pro-legalization of marijuana.  Which is funny because while I am also pro-legalization of marijuana even though I hate the stuff for myself (yes I have inhaled) – I don’t really feel that strongly about it.  But Max does.  That’s pretty much it.  He loves cats – to point of obsession but he doesn’t really consider this a topic of discussion.  He also loves humorous pop culture as seen on youtube but he wants to show this to you all the time whether you care or not but doesn’t really consider this a topic of conversation to bring up – though he’ll engage in it if you draw him in.

There’s this other thing that Max does often but I’m not sure how many people notice it – after he says something he’ll often say it again to himself under his breath.  It’s a little distracting and I don’t even know if he knows he does it.

Inflexible adherence to specific routines or rituals – HOLY FUCKING HALLALUJA YES YESYESYESYESYESEYSEYSEYSEYSYEYSYEYEWYYEY – yes.  Yes.  Do I even need to give examples here?  Do I?  He requires help with his routines.  I think that’s the only difference between him and a person with OCD.  He needs me and Philip to make the rituals/routines happen.  The morning ritual (which Philip is incapable of performing because he refuses to remember what order to hand Max his clothes in and he forgets about giving Max lotion after laying the shirt on his chest but BEFORE giving him his socks).  If we don’t perform the rituals with him, they don’t happen.  But what makes them problematic is that he will not move on to the next thing without them.  As I mentioned in a post recently – if the bedtime ritual doesn’t happen, then he doesn’t sleep.  I have managed to simplify his rituals over time so that they are more bearable for me and Philip but they are essential to him still.

This morning he brushed his teeth without me telling him to.  That, my friends, has never happened before.  He was very proud and made sure I smelled his breath.  One of the constant struggles for me in parenting Max is that his need for rituals is so strong that they are created very easily and only painstakingly overcome and removed or changed, so I’m constantly trying to anticipate them before they happen and prevent them from becoming rituals by insisting on some variation.  This is painful for both me, Max, and Philip.  Because we’re working against a very strong inclination.  I think the hardest part is that Philip and I are also extremely ritualistic.  So we all have this natural inclination but Philip and I feel an obligation to prevent Max from forming negative rituals or an unhealthy degree of dependence on ritual but also – it’s exhausting maintaining the balance between all of our needs for rituals and routines with our need to become less dependent on them so we don’t become paralyzed by them.

!!!!!!!!!!!!

Six out of fucking seven.  Now why has no one suggested testing him for Asperger’s or autism?  Why?  Six out of fucking seven, people.  I know that you could get seven out of seven and still not have AS or HFA (soon to be the same thing?) but how have 3 psychologists now not even asked it?  Max’s current doctor came closest with NVLD but when I read about NVLD it doesn’t fit as well as Asperger’s does.  Every fucking bell is ringing here.  I’m aware of how many F-bombs I’m dropping.  In case you thought I wasn’t aware of how repetitive it’s becoming.  There just comes a point where that’s the only level of emphasis you have left to express what you’re experiencing.

Outside of the School Context – social health

In the school context – if he keeps doing okay I suppose some people might consider it irrelevant to push for a diagnosis.  But I’m not just concerned about how he does in school.  That was just the most urgent cause for seeking help.  Right now my son does not have a healthy social life.  He technically has 3 good friends.  2 out of the 3 never invite him over or out because they really don’t jive with Max that much and only hang out with him when we make them because we’re very close to their parents.  1 out of the 3 really does like hanging out with Max and it works right now because he’s just as interested in video games as Max is and is perfectly happy to restrict all their time together to playing the video games Max wants or watching the shows Max wants.  This kid and Max have known each other since they were born and his mother and I are very close friends.  They have a great deal of tolerance for his quirks and obsessions and that’s why Max still requests playing with him.  But he really only remembers to asks if we can invite him over once a month.  Or less.  So Max isn’t hanging out with anyone outside of school besides us and his xbox live friends who he hasn’t been playing with online nearly as much these days and every month or so his one good friend.

People really truly deeply want everyone to be considered “Normal”

I say fuck the fear of noticing that some people are different.

I’m not normal.  I used to carve my skin with a steak knife.

The goal isn’t to be normal but to make being different safe and as healthy as possible.

People really do love to tell me how “normal” and “well adjusted” Max is.  I would like to ask them if this was their kid, would they think it was healthy?  Except you can’t ask them because they really do have more or less normal kids and have a million pat answers for me that would have worked for their kids “Just take away his video games and he’ll do other stuff.” or “Make him go outside and not come back in for 2 hours” or all other manner of really stupid suggestions because they don’t get it.  If Max was obsessed with swinging on a swing instead of playing video games I wonder if they’d advise me to force him to do something else or if they’d think that was fine since swinging on swings is an acceptable activity whereas most adults think playing video games is bad for a kid’s health and mind?  While that would be interesting to know – I am done hearing people telling me he’s normal and well adjusted.  People who think that don’t know fuck-all about my kid and if their kid was the same and they thought it was healthy and normal then they also don’t know fuck-all about what’s healthy and normal for their own kids.

I’m worried about Max’s antisocial behavior.  He likes people a lot when they share his interests but if they don’t he’s just as happy being by himself and with his parents.  He has new buddies at school but he has no interest in seeing them outside of school.  I’m worried about Max learning to care for himself without me to give him the constant structure he needs to accomplish this stuff.  I’m just as worried about his diet as I have been since he was two even though I’ve come to accept his sensory issues as a very real and hostile experience for him.  I work tirelessly to try and get him to eat more variety.  Until I get to the end of my energy and just stop trying for a while.  Inevitably my worry builds up again and I renew my efforts in an endless cycle of trying to make him as healthy as I can within the limitations before me.  I make efforts to get him to go on walks for exercise.  Max doesn’t like wearing shorts because he hates the feel of air on his legs.  So in warm weather he is really uncomfortable in the sweats he wears.  The only pants he WILL wear.  Usually with the pockets pulled out.  He frequently hurts himself when getting exercise – hurting his ankles.  Not surprising now that we’ve explored the foot issues.

Reading social cues and how Max only reads the loud ones

One of the other things I read over and over in my reading about both Asperger’s and autism is about lack of ability to read social cues.  I don’t think these “later signs” listed above really address that and it does seem to be an important diagnostic factor and Max has a lot of difficulty with this.  He has a well developed sense of humor – which a lot of people seem to think is inconsistent with either of these disorders but my reading suggests that that isn’t necessarily true.  But problems with reading social cues is.  Max has a very hard time telling when people are signalling to him that they are upset, or bored, or impatient, or annoyed.  He understands only the big signals like laughter or anger.

This was evidenced a lot last year in the school he was at.  We got so many reports of him saying things that upset other people.  When I talked with Max about this I would say “The principal says that you upset Jenny today by talking about something upsetting to her that she asked you not to talk about.” He would say “No I didn’t.” Me: “You didn’t hear her tell you to stop talking about that subject?” Max: “No.  She was fine.  We were just talking.” Me: “You didn’t notice that she was getting upset?” Max: “No, she was fine.” Me: “So you don’t remember her getting upset and crying?” Max: “Well, I don’t know.  Maybe.” and I would see him trying to remember the scene.  I’ve seen this constantly with him since he was a small kid playing with others.  I always said “He just doesn’t think before he talks.  He doesn’t mean to hurt other people’s feelings.” and this I believe was true – that he didn’t mean to hurt their feelings.  When I would explain how upset he had made another child he would feel bad.  But for a long time it was just written off as the usual developmental stuff of little kids.  They all make each other cry sometimes.  But as he got older and other kids weren’t doing that so much – Max was still doing it.  I have always explained it as an inability to filter his thoughts, an issue of impulse control.  Which totally fit with a diagnosis of ADHD.  However – this week I feel like veil has been lifted and I’m seeing these behaviors in a new light.  I am looking back over the years and it is so powerfully obvious NOW that he’s always had trouble reading people in social situations.

There’s another aspect of this – being able to read animals.  Max is very poor at reading his own animals.  He loves them all so much – he likes his animals more than he likes most people.  He would never want to hurt them.  Yet he is constantly picking Pippa up and not recognizing when she’s giving the message that she’s done.  She’s a magical being and will often, after struggling to get away, give up and just go with it.  So Max doesn’t see the struggling as an indication that he should let her go.  Her meowing isn’t her saying “put me down”.  He just doesn’t see it.  I tell him over and over again.  He suffocates her with love.  Not literally.  Except that something I’ve never said out loud is that I DO worry that he’ll hurt one of his animals by not recognizing that he’s holding them too tight or that he picked them up without giving proper support and their objections don’t register as pleas for him to be more careful.  Max would be devastated completely if he ever hurt one of the animals.  But he continually has trouble reading them.

Most troubling is with Chick.  He overwhelms her and makes her nervous when he hovers close to her face with his whole body trying to give her love and attention.  She’s curl her lip and he doesn’t notice.  She’ll trying backing up but he doesn’t notice this is her body language indicating that she’s uncomfortable.  Then she’ll snarl at him loudly and that will get his attention.  Just like he doesn’t recognize human signs of irritation until it becomes anger and they yell at him or snap at him.  Chick has never bitten him but I get worried.  She’s getting older and crankier and a lot more startle-able.  I’m afraid that one day she will actually bite him.  So far she has always immediately forgiven him and she isn’t ever nervous around him except when he gets in her face or into a corner.

I need a name for Max’s collections of oddities and impediments.  Maybe it’s my OCD need for categories and labels and order.  labels make things easier to discuss in a succinct manner.

Also: ambiguity literally fills me with fear and rage.

I have a name for that issue.

And that calms me down.

So I’ve been doing all this research and I am becoming clearer and clearer and seeing things in a new context and suddenly – there’s something that explains absolutely ALL of Max’s quirks, issues, problems, behaviors, challenges – I have found his tribe.  Is he severe enough to actually get a diagnosis?  I think he is. I need more help and support.  Desperately.  I am 99% sure now that Max is on the high functioning end of the autistic spectrum.  In that context my son makes absolute and total sense.  My goal is to find his tribe and to learn from that tribe how to help Max succeed as a person in a world that is terribly uncomfortable for him.  I need to know what to call it – this thing that makes everything that is a mild parental challenge for others into Mount Kilimanjaro to us.

I have written this exhaustively long post mostly for my own benefit – to record the new information I’ve been collecting and the reasons I think it’s pertinent.  I am not going to go back to the psychologist until I have enough information so that I can ask him the important questions, so I can be informed and well prepared to have a real conversation about this.  I am not going to accept some meagre dismissal of my suspicions.

I will end this post by sharing what Max “learned” at the all day field trip he took to the woods with his science class yesterday which ended with his usual rants about religion and the odd comment that if he was a character in Star Trek he’d be a Vulcan because he’s really logical.  I pointed out that he’s too hot headed to be a Vulcan.

What Max “learned” from the all day science field trip to the woods: Nature hates human beings and is scary, snakes having the venom strength to kill ten humans is proof, it is hot and stupid today, food that goes on hikes in the heat is inedible, cola tastes like “ass”, and there are way too many bugs in nature.

I keep updating this post to reflect even more reading and comparing. 

Sources for my reading on the subjects of Autism, Non-Verbal Learning Disorder, and Asperger’s Syndrome:

National Institute of Neurological Disorders and Stroke Autism Fact Sheet

National Institute of Neurological Disorders and Stroke Asperger’s Fact Sheet

The Boundaries Between Asperger and Non-Verbal Learning Disorder by Bonnie Forrest

National Center for Learning Disabilities – Non Verbal Learning Disabilities: A Primer

My friend Sid who has worked in the the mental health field went over the DSM criteria for Asperger’s Syndrome and we found that Max met the criteria in the current DSM.  However, the new DSM does not include a separate diagnosis for AS and so I don’t know if Max would meet the new criteria or not.  Here’s the DSM IV criteria:

Asperger’s Disorder – the DSM criteria reprinted with permission on BehaveNet

Sid shared this link to an article about the new DSM and its absence of a separate diagnosis for AS:

American Psychiatric Association Approves dsm 5 Revisions

My Asperger’s Child: Asperger’s versus Non Verbal Learning Disorder (most clear explanation of differences between the two and definitely corroborates my belief that Max has Asperger’s and not NVLD.)

Nonverbal Learning Disorder or Aspergers by Adrienne Warber on Lovetoknow autism  (Again – this confirms my suspicion that Max has AS and not NVLD – the obsessive interests are a key difference and also Max has no difficulty reading and retaining information, Max did not pretend play as a little kid, has problems with nonverbal communication but can learn with other forms of communication.)

*The DSM is changing things so that Asperger’s will no longer be a separate diagnosis from autism – they will be under the same umbrella – the “autism spectrum”.

There are times in life when you have to follow your instincts for the long haul.  When you have to eschew everyone’s anecdotes and calculate your own experience against the wall of human experience.  When you have to ask the hard questions and push when everyone else says to pull.  When you look in the mirror and see what you’ve become and don’t have time to be depressed because you’ve become exactly what your child needs.  When you have to believe your dreams even when no one else can see them with the clarity you do.  Or at all.

Ultimately I still believe that truth sets us all free.  Free to feel the pain we have a right to feel.  Free to behave badly when the ax brushes our throats.  Free to thumb for rides into a universe of danger and adventure.  Free to eat meager words of encouragement for sustenance.  Free to not die of heartache or fear.  Free to embrace our freak while simultaneously finding our tribe so we don’t feel so alone in the dark.

I know what I am.  I know who I am.  I see people with a painful clarity that I know is reflective of the truths they think no one can see.  The truths they need to believe that no one understands, and I always play along.  I cling to hopes for them I have no right to cling to.  I wrap wings around them that I burnt when I was thirteen years old that have become vaporous with memory and disuse.

I am the fattest person I know.  I’m wearing my shadow life on my bones.  I would apologize for my size if I wasn’t so busy holding so many people up.  If I wasn’t so busy trying to find the numb calm the knife used to give me.  I have had less to drink than I want and am coddling a hot cup of tea and telling myself it holds my burdens for me.

It doesn’t.  That’s just a lie I’m telling myself tonight.

Never mind the noise.

Never mind the ash.

Never mind.

There are times in life when you have to follow your instincts for the long haul.  When every aphorism is trying to fix you to the wall with industrial strength adhesive – pinning you to the Devil’s own inspiration board.  When everyone is trying to shill their religion because you are bent with pain and vulnerable to their promises of light.  Because they see your half-life and think they can outlive it.

Teddy bears, heart balloons, hookas, and sex.  It takes all kinds.  Hearts and flowers and porn stars – nothing like it!

In my disturbing dream there were many things but the last thing before I woke up was that I saw a predatory owl in a knitted cozy swoop down to a group of kids to steal their crusts and crumbs and it saw me and tried to keep me from photographing him.  I gave chase.  He flew low and scrambled towards another group and got distracted by more food to grab but I finally cornered him against a food truck where he suddenly turned into a young blond boy with a black eye, dirt covered face, and enormous breasts squished up in his knitted vest.

Huh.

Other features of the dream:

I was just trying to get ready to catch a bus to go to work.  I was hungry but didn’t have time.  I decided to eat my lunch of scalloped potatoes (which I was hurriedly stuffing into a plastic container and making a mess of it) because it would be faster than making eggs.  I was digging for enough dollar bills for the bus and realized that my mom’s cow was eating all the cords in the apartment.  I started collecting the various items with cords and attempted to shove them out of the cow’s reach but she kept getting at them.  When my mom showed up I explained in great exasperation that her cow was getting into things again and could she PLEASE DEAL WITH IT?

I put some water on outside for some reason.  I think to water the lawn growing at the curb all the way down the street.  Within seconds the entire street was flooded several feet deep and everyone started talking about the flood.  I knew there was no way I could have caused a flood with the amount of water I had used.  Then there was a manhunt on for the culprit with posters tacked to poles with the number of my apartment on them and my apartment building super finally called me with the water company and started interrogating me and I said I’d heard that thousands of gallons of water were wasted and there was no way I could afford to pay for it.  I was practically in tears when they said they knew it wasn’t me.  That someone had used my key to the water to let out a flood.

There were some other things but they are already vaporized in my head and I can’t catch them and give them words.  They now belong to the part of my head where such forgotten bits of dreams collect like flotsom in a crevice of rock just out of reach of the mean surface of the sea.

I lost 8 month’s worth of photographs.  I did back everything up two months ago.  I had to have done something really weird to have only lost my photos between May 2012 and December 2012.  I was really bummed.  But then I let go.  I keep taking more pictures and everywhere I go there are interesting store windows and sidewalk scum and graffiti and views.  I absolutely love taking digital photographs.  I usually use my favorites for blog posts or put them on flickr so I never lose all of my pictures no matter how many times I have to learn not to trust my technology or myself.

Owl in a cozy.  That’s ultimately going to be the most interesting thing in my day.  The thing in my dream.

Also – I think we might be watching Shaun of the Dead this evening for family movie night.  I never thought I’d get the whole Zombie thing.  I totally get it.  It’s a favorite family past time to plot out how we’re going to survive a zombie apocalypse.  One of the best movies ever made is Zombieland and one of the best shows ever made is The Walking Dead.  I didn’t expect to like either and resisted watching both of them and only gave in to Max’s never-ending requests that I watch them with him.  Zombieland is his favorite movie.  Now it’s one of mine.  I hope Shaun of the Dead doesn’t disappoint.

One last thing – last night I watched the romantic comedy “The Decoy Bride” and it was fabulous!  It stars Kelly MacDonald who is quite possibly the most beautiful woman in the world and David Tennant.  If you haven’t seen it and like romantic comedies that aren’t completely stupid – give it a try.

I am so inconsistent with how I write titles.  Sometimes in quotations and sometimes not.  I need to look into that.

Happy Sunday to you all!

This week Max finally got tested for ADHD.  We brought with us the teacher evaluation sheets as well as the one I filled out and he took the test which I thought was going to be this big difficult long test – from the way everyone talks about it and the way no one wants to pay for it and the years it’s taken me to get him to this point…it turns out to be a 15 minute test.  I’m choking back my angry feelings that everyone – health insurance, doctors, teachers, etc – making this seem so complicated when it is very very simple.

Max does not have ADHD.  It is conclusive when all the data is compiled.  Just looking at the data from the computer stimulus test it is easy to see why everyone all along the way has thought it likely that he had ADHD.  But he doesn’t.  The test revealed some indication that Max has some auditory processing issues but to explore that further would require an occupational therapist qualified to do sensory processing assessments.  This would either cost us thousands of dollars out of pocket or that the school use their resources to perform such tests.

I almost started crying in the office.  I think the doctor thought I was disappointed that Max didn’t test positive for ADHD.  That’s not it at all – given my choice I would choose that Max not have any brain or neurological disorders.  I almost started crying because I have been pushing and pushing for this testing for years so I could rule it out and move on.  I was crying because other than the awful homework nights and PE failing – Max has been doing very well this year.  So well that all of his teachers and the school counselor can’t see what the problem is that I keep talking about.  I feel fraudulent.  I feel like the hypochondriac who feels cancer spreading in her body but no one else sees it until it’s suddenly an urgent problem requiring surgeries and treatments I can’t afford.  I feel like the mentally ill person no one believes because I’m, you know, mentally ill and us people have a tendency to see things distorted and enlarged.

Except that I know I’m not imagining the problems Max has had since he was a kid.  I know I didn’t imagine the self harm.  I know I didn’t imagine him talking about stabbing himself to death when he was two because he got in trouble for something and felt really bad.  I know I’m not imagining the difficulty he’s had fitting in socially.  I know I’m not imagining the teachers and principal at Ballston Community school calling me three times a week to tell me about Max’s disruption of their classrooms, his disrespect of this teacher or that, his refusal to cooperate, his altercations with the older kids, and them all looking to me for a solution.  Them looking to me to get him tested, or medicated, or give him consequences that would make his behaviors STOP.

Everyone looking at me to DO SOMETHING ABOUT MY KID.

I know I didn’t imagine how his fifth grade teacher gave up on him and had to send him to the principal’s office several times a week just to get him out of her classroom where he was making it impossible for her to teach the other kids.  I did not imagine that awful meeting I had with his teacher, the principal, and another teacher who wanted to be in on the meeting to tell me how disruptive and obnoxious my kid is in assemblies – the only time she had to deal with him.  I did not fucking imagine all these people telling me the school couldn’t do anything else for my kid.  They were done.

They looked at me and asked me WHAT ARE YOU GOING TO DO ABOUT YOUR CHILD?

So I almost started crying because everyone keeps telling me I need to do something about my child and now everyone’s looking at me and asking why I’m making such a big fuss because my kid is obviously JUST FINE.  It makes me want to tear my hair out.

The tests have conclusively ruled out ADHD and the current psychologist and the previous one that I didn’t like both think he doesn’t have OCD either.  What looks like OCD is apparently sensory processing issues.  But right now there is no official explanation for his intense need for rituals.  The bed-time ritual whose order is very important and without which he will not sleep – there’s no official explanation for it.  But other people’s kids don’t stay up until 3am waiting for their bedtime routine to begin because their parents accidentally fell asleep before getting him into bed.  yeah, that happened.  Max stayed up waiting and waiting for me to tuck him in and put the fan on and give him his melatonin and his book and put the frogs on – he got so tired trying to stay awake and finally came down to wake me up and angrily ask me why I never came up to tuck him in.

I asked him why he didn’t come to get me earlier.  He didn’t know.  It didn’t occur to him.  He was waiting for things to happen the way they’re supposed to happen.

What now?  Nothing.  I worked hard all this year to avoid suddenly finding ourselves back in that bad place with no support in place to deal with it.  I wanted to set things up for Max to avoid having to wait until things get BAD to get him help.  I worked and stressed tirelessly for nothing.

Philip reminds me that it wasn’t for nothing.  After four years of not  being able to get him tested to find out if he does, in fact, have ADHD – we finally know for sure.  I wish it didn’t leave more questions and uncertainty, but it’s true that having at least this one thing crossed off the list of possibilities is important.  It’s off the table.  My kid isn’t “normal” or “typical” but we know at least one thing he’s not.  That’s something even if it doesn’t help me prepare for the bad times I know will come.

The psychologist thinks Max most likely has NVLD and describes it as a personality disorder rather than a brain disorder.  He thinks the reason Max is doing so well this year is because he’s in an environment that’s working for him and has teachers that he likes and respects – except for the PE teacher – and that as long as he has an environment that works for him and as long as he likes his teachers then he’s going to seem pretty normal and the school isn’t going to see his behavioral problems.  He says that when that changes, and he predicts that if it doesn’t in 8th grade then it likely will in High School, Max will likely act-out and become problematic as he was before.  So if it gets bad – and the behavioral issues return – then I push the school to test him for learning disorders.

In the meantime I can’t ask for any accommodations from the school.  Teachers can make them as they individually see fit and most of them already are to some degree.  The biggest issue this year has been the homework and his PE teacher.  He is trying harder with his new PE teacher and isn’t flunking his class now (the better shoes that correct his pronation are helping too).  As for the homework – it hasn’t been an issue during testing because he’s had light to no homework and it’s been AWESOME.  As the teachers return to the normal level of homework I will instigate my plan to help Max with or without their cooperation.

It is ridiculous for my kid to do more than one and a half hours of homework a night.  He often takes two to two and a half hours to do a full night of homework.  Sometimes it  becomes three hours.  This is unacceptable to me.  I have told the counselor and I will be telling the teachers that I will time his homework on any night that he has a full load so that he doesn’t do more than 1/2 hour of homework per class.  It’s what I have to do for my kid and it may affect his grades.  That’s possible.  My kid is smart enough to get straight A’s but if achieving that means going through the stressful struggle to get his assignments done and me having to spend my entire evening trying to change his dark mood and his frustration and tears back to a good mental place – it’s not worth it.  I care more about Max’s emotional state than I do about him getting top grades.

I’m his parent.  I know my kid.  I know his strengths (he has a lot of them) and I know his struggles.  My relationship with my son is important and finding the delicate balance between preparing him for reality and protecting him from it isn’t easy but it’s something I take seriously.  I’m trying to make him take responsibility for his experiences outside our home but I also know he’s generally behind his peers in practical ways and pushing him when he’s not ready is both ineffective and destructive.

When Philip came home after the testing and commented to Max about his test results Max said “Yeah, I guess I’m just your problem child.”

And that about sums it up. There’s no diagnosis to explain his otherly-ness.  I know he has anxiety and that his anxiety medication has helped him quite a bit.  But he doesn’t even have an official diagnosis of anxiety.  There’s no official explanation for why Max is so different.  Why he poses such parenting challenges.  It’s fucking hard just feeding the kid.  It’s practically a full time job trying to get him to try new foods and find ones that are healthy or healthy-ish that he’ll eat.   Being able to explain to people that his food issues are related to his OCD was the closest we ever came to shutting people up – shutting down their criticisms and interference and rudeness and unwanted advice.  Now we don’t have anything.  We have no official defense against everyone’s criticism.  And yes – I get criticism all the time – both outright and implied.

So I’m IT.  I’m our only defense.  I’m wearing mental boxing gloves and I will fight anyone who tries to put my kid in their own boxes and then find him (or me) wanting.  We have our own yardsticks for success and normalcy.  I will do battle with anyone who suggests or implies that my kid is the way he is because he’s just a bad seed, a willful shit, or that he’s “normal” and that it’s just my parenting that’s made him into a spoiled kid who won’t eat vegetables.

Max is my problem child.  Parenting him is like parenting three kids at once.  I wanted protection for us.  I wanted help.  I wanted support.  I didn’t just want those things – I’ve been desperately in need of them.  But what I keep coming back to is that it’s just us.  We are on our own as usual.  Doctors can’t help.  Teachers can’t help.  There are no resources for us.  There is no help.  We’re on our own.

But you know what?  The fact that Max is as confident and well adjusted as he is today is because of mine and Philip’s determination to parent the child we actually have and to adjust our parenting to meet our child’s needs and challenges.  We aren’t following anyone’s parenting rules and we keep making it up as we go along.  We change as our child changes and the most important thing we’ve ever done is to choose our battles carefully.  Max trusts us.  He talks to us.  He turns to us and he knows he is loved no matter how weird he is and that, in fact, we love his weirdness and he loves that his parents are really weird too.  He takes pride in it.  So I think the three of us, with my mom in a supporting role (and who’s also wonderfully weird), will protect each other and support each other even when no one else does.

Max is an amazing kid.  Parenting him is going to be the death of me but it is also an incredible privilege.  This kid of mine has a whole lot of shining to do and it’s my job to make sure he has the opportunity to do so.

Before you try to fit any of us into your preconceived notions of how parents and kids should be or act – I suggest you look up!

Before you judge any of us against your own yardsticks – I suggest you LOOK UP!

My boxing gloves are on and my fists are ready.

You should know that I have a wicked right hook.

This is day 4 of my news fast.  I can’t say it’s easy to not click on everyone’s news links on Face Book or take part in the discussions about them all.  I can’t avoid seeing snippets of what people are talking about and the titles of the links they share so it gets my thoughts going and I can feel my body tensing up and I want to jump in and SAY STUFF -

I just stopped myself from engaging in a discussion about race and the Tsarnaev brothers.  Apparently people are trying to categorize their race and there are some suggestions that they might not be white.  It seems that some white people will feel better if they can think of the Tsarnaev brothers as “not white” to uphold their tenderly held belief that white people don’t do bad stuff.  Really?!  Man, people sure do have short memories when it suits them.

Timothy McVeigh. White American terrorist killing other Americans.

So fuck everyone who thinks terrorists don’t come in white and Christian.  Terrorists come in a full range of colors and backgrounds and religions.

I’m supposed to understand that my opinion, as a white person, is not valid in discussions about racial discrimination because I can’t know what non-white people go through, because I can’t know what it’s like to deal with institutionalized prejudice.  I’m supposed to feel guilty for my privilege or at least need to understand that my whole life has been easier than those of non-white people and therefore I need to stop shitting down on people who don’t live on my heavenly cloud of ease.  At the same time there is plenty of racial prejudice in these same discussions about race against white people since they are the only perpetrators of racism in the world.*

Which is NOT true.  Racism is endemic the world over.  Black people hating Mexicans.  Mexicans hating Asians.  Chinese people hating Japanese people.  White people hating black people.  English people hating the Romani.  Racism is engaged in by every fucking race on the planet.

Everyone is participating in putting up walls between people with different skin colors than their own.  Everyone.

But the thing that bothers me most is the assumption that no one can understand anyone else’s experience of persecution.

It’s as though all people believe that whatever it is they’ve experienced can’t possibly be understood by people who are different than they are – there is an assumption I dislike (that most people are guilty of regardless of the color of their skin) that we have to be exactly alike to understand each other, to know what abuse is like, to have experienced discrimination, or to have been shoved under a rock by other people’s privilege.

I’m a woman.  I’m a mentally ill woman.  I was a suicidal teen.  I was a “death rocker” and considered by most people to be a “freak”.  I had a prominent lisp.  As a middle aged person I became obese.

You want to know what I experienced being all these things?  I have experienced systemic gender prejudice.  I have experienced societal rejection for a number of reasons at different times in my life and experienced great pain with that rejection.  As a mentally ill person I get hit with people’s bigotry and ignorance on a frequent basis.  People are constantly posting ignorant false shite about mental illness and when I read it and hear it it’s hurtful and dangerous misinformation.  Racism may be the most prominent form of bigotry in this country but mentally ill people experience bigotry, abuse, marginalization, and are blamed for all kinds of problems in the world.  A favorite being that whenever an unspeakable act of violence occurs the first assumption made isn’t that it must have been perpetrated by a particular race but that it must have been done by a crazy person “a madman obviously did this” or “only a mentally ill person could do this”, or “it was probably a mental patient off their meds”.  You know who participates in this fear and bigotry against mentally ill people?

PEOPLE OF EVERY RACE, GENDER, SEXUAL ORIENTATION, NATIONALITY and RELIGION.

So it pisses me off when people use my whiteness as a reason I can’t possibly understand the racial persecution they’ve experienced.  I am smart enough to use my own experiences of persecution and relate them to yours.

So let’s start over.

People come in all shades of skin.  I love all shades of skin.  I see beauty in every racial combination on earth.  We can’t avoid talking about race because it is a problem that permeates our lives.  There are cultural divides that need crossing.  There are many levels of understanding that need to be reached.  COMMON GROUND.  Our conversations should be leading us to common ground because it’s there – it’s always there and anyone not looking for common ground between all of us humans is not trying to solve anything.

I can’t know what you experience unless you talk to me and I can’t hear what you say if you start telling me how I can’t know what you’ve gone through because that’s the sound of you slamming a door in my face.  That’s the sound of you making assumptions about ME.

I’m interested in race.  But not in fights about race.  I want to feel that I can talk to people who look different than me with curiosity that comes from a deep desire to find common ground and to KNOW WHAT IT’S LIKE TO BE YOU.  That’s what I want to fix.  Our ability to talk to each other without all this racial baggage.

But racial baggage, like that of sexual abuse, has a very long life.

I don’t accept racism.  Not anyone’s.  I may be white but don’t for a second think that means that white racists speak for me.  When I see someone whose skin is a different shade than mine I do not make immediate assumptions about them based on their skin.  I am more likely to make assumptions (that may later be proved wrong) based on the way they’re walking, the way they’re interacting with others around them, and how they interact with me.  I make a million snap judgements about people every single day.  It’s how I stay alive.  My ability to avert danger relies on my ability to see an aggressive person approaching.  But those judgements are never based on someone’s religion (only known in strangers if they are wearing something that gives their religious affiliation away), their skin color, or their physical form or visible disability, or their gender.  That’s something I can tell you for absolute certain.

So I’m tired of talking about what divides us all.  I’m tired of assumptions being made about what I can and cannot know or relate to or understand.  What I want is to hear people’s stories and I want to cross the divides between us.  This world is full of rich and diverse cultural experiences and I want to know your stories and I want you to hear mine.  I want to know why you believe as you do – not so I can ridicule and isolate and separate us – but so I can understand and find those threads of commonality running between us.

Those threads of commonality between us all is what can heal us all.

*I want to be perfectly plain here: it is mostly white people who have, in discussions about race, worked hard at the pump of white guilt and suggested that my opinion doesn’t count and that my being white precludes me from having any idea what black people go through in this country.  I have listened to the occasional rant from black people about how white people can’t know what they’re going through, and that always bothers me, but they don’t work the white guilt pump which I find useless and insulting.  I do not feel guilty being white.  I had as much choice in my skin color as everyone else.  What matters is my actions.  What matters is what kind of person I am inside.  That’s what matters about everyone.  Everyone.