Tag: parenting a special needs kid

Parenting: Keep the Shovel Close at Hand


I’ve been filling out questionnaires for Max’s school testing that will commence next month.  Questionaires about his behaviors, his medical history, his social interactions, and his health.  It brings up such strange feelings.  My purpose never changes.  I knew the first time he said he would stab himself to death when he was a toddler that I was going to be filling paperwork out and fighting for his well-being and begging others to see what I see and help me help him.

But being firm of purpose doesn’t mean you don’t experience a full range of emotions while doing what you need to do for your kid.  Evaluating your kid, trying to be as completely honest and as objective as possible even though you can never be objective about your own child – it’s a strange banquet of memories you trawl and sift.  It’s a test of your own ability to separate your child from your skin, from your heart, enough to give solid information.

I think the most surreal thing to me is to be evaluating his social interactions and to know that he sees them so differently.  He was Skyping with one of his oldest and few friends the other day and I heard his friend’s friend say “I don’t much like this Max guy” and then they hung up on Max.  I asked Max if he was hurt by that.  He says “What?”  I said “That kid just said he doesn’t like you.  Did that hurt your feelings?”  He says “No.  Why should it?”

That’s everything in a nutshell.  Max doesn’t  care if people don’t like him.  He doesn’t care if they’re rude to him if he perceives that they’re just being honest.  Because that’s how he is himself.  He doesn’t understand why people get ruffled by the things he says or why people get hurt when he’s honest.  But Max loves having friends.  He just doesn’t keep them very easily.  The few he keeps tolerate his seemingly abrasive political and social rants and his blatantly unfiltered thoughts and opinions without much offense.  It takes a special kind of person to love Max in spite of his obsessive interests and narrow topics of conversation.

I was hurt.  Hearing that kid say he didn’t much like my son was bitter and choking.  I know a lot of people feel that way about Max too who never say it out loud.  He doesn’t feel the slights but I feel them all.  Every single one.  He has so little idea of how much he exacerbates and annoys people.  He only notices and cares about the really loud ones and the people in positions of authority who don’t like him because it has a strong impact on his comfort.

So I can’t be objective.  I know it’s unrealistic to expect it of myself.  Still, I need his issues to be taken seriously and so I have to take my role as observer seriously too.  I have to continue to hone my skill of separating the chaff of my motherly emotions from cool observation that might actually get him the help he needs.

The hardest things to evaluate are things like “Acts strangely” – how the hell can parents as strange as Philip and I judge what is strange or not strange behavior?  We’re the WEIRDSLEYS personified!  I was a goddamned suicidal teen!  Philip was an introverted artist and definite odd-ball.  We couldn’t have married each other otherwise.

This week Max and I have talked a lot about sex and sex-ed as presented in school.  He has many complaints to report.  He says the school talked more about the virtues of abstinence than they did about protection.  He also really hates that some kids his age snicker at the word “penis” and “vagina”.  I’m so happy he’s bringing these topics up.  I’m so happy we’re having the opportunity to discuss birth control and sexuality and what real “virtue” is.

Here’s my distilled stance on sexuality in a nutshell as discussed with my 12 1/2 year old:

  • Abstinence is not stupid if you aren’t ready to have sex and/or you feel it’s important to wait and certainly is a valid form of birth control, IF you can really BE abstinent.
  • There is no greater virtue to abstinence than there is to having careful and protected sex.
  • Sexuality isn’t a contest of virtue, it’s a natural human urge and action and there is no shame in being a sexual being.

It is irrelevant how many sexual partners you have or don’t have.  The most important thing is this:

  • Honesty.  Be honest in all your sexual relationships.  Be honest about what you want, what you’re about, whether you’re just wanting sex or you’re open to more.  Don’t cheat on a partner.  Don’t make promises you can’t deliver.
  • Safety.  Unless you are in a long-term serious relationship – always protect yourself with a condom.  STD’s are real.  Some are just uncomfortable nuisances while others can kill you.  Unwanted pregnancies present young people with impossible choices no matter what your politics are.  Always take precautions.
  • Consensual actions.  Never ever force another person to do things they’re uncomfortable with doing no matter how much you want them to do those things.  When someone says “no”, even after having said “yes”, it’s time to STOP.  Likewise – never let anyone pressure or force you to do anything intimate you aren’t completely comfortable with.  You always have the power to say “no”.
  • I am always here to talk to and I will not judge, I will only try to help and protect and heal my child/teen/adult.

We have discussed so much this week.  I used to dread the time we would have to have these talks.  Now that the time has truly arrived I feel up to the task.  We have fleetingly discussed masturbation (how it’s healthy and normal which he already knew) and how even if you believe in a woman’s freedom to have an abortion it is still, for most women, a dreadful and emotional choice to have to make, and the difference between a healthy libido and a slut.

We discussed how “slut” is a pretty charged and judgmental word to use.

We discussed how it’s okay to have a strong libido if you:

  • Protect yourself.
  • Respect yourself.
  • Respect your partners.
  • Remain honest at all times.

We discussed douchebaggery.

There’s not a lot more I can do and yet there’s so much ahead of us.  I’m haunted by my need to protect him and to simultaneously set him free.

I know what I know in my gut.  My gut has yet to steer me wrong.

Stay the course, keep the shovel close at hand.

I Can Make You Care About Toast

greyish lavender mushrooms

(This is what I originally wrote for the previous post “Words in Action: the impassioned letter strikes again” but I held off posting it because I wrote it around 2am and I now have a {mostly} strict policy of not posting anything I’ve written in the wee hours until I’ve slept on it.  Then I forgot about it.  I realize tonight that I wrote it best the first time.  And yes, I realize that I’m showing you mushrooms and not toast.  There’s a reason for everything.)

Our individual mythologies start developing before we even realize it – is informed by so many invisible forces that convene to create the perfect fruiting environment for your own personal genius – for whatever it is you become the master of, seemingly just by breathing.

Everyone has something.  Even if they can’t see it for themselves.  It will be evident in the patterns of vapor they leave behind them.  It will be evident in the relationships they keep and the ones they choose to discard.  It’s like our DNA.  No two mythologies are alike.  We drop it all across the universe like the crumbs of an endless meal.

There is a fantastic wind tonight blowing pollen around like tiny passive aggressive bitches getting under skin, into nasal passages, and excavating previously virgin territory.  Nothing is sacred tonight.  Not even your specially curated mishaps.  All is assaulted by this disease of the season but no one will lodge complaints against the agent that brings warmer weather.

It’s a night of assessment.  Fitting, considering I won something today.  I won what should never have been a fight in the first place.  I won because I have become a master of words, of persuasion, of entreaty, and of honesty.  Bald fucking honesty.  What I have learned over and over again is that I don’t win when I try to win.  When I do what is expected, what is considered acceptable, what is considered politic, everyone smells a fraud and runs.  But when I unfold the words that are true to me in the vernacular of my own mythology – magic happens.  Doors open.  My value becomes more visible only when I throw it to the ground and dare the brave to crush it.

My dream house was sold to us because of a letter I wrote the seller telling him why he should sell his house to us even though we couldn’t offer him the highest bid.  The seller told us it was my letter that made him choose us.

I wrote letters to two of my most treasured teachers at the Santa Rosa Junior College.  It wasn’t the politic kind of letter to write.  I gave my history teacher poetry I’d written.  What could signal a social death more surely than some poetry and effusive avowals of undying appreciation?  Here’s how my teacher responded (something I’ve held so close to my chest over the years and not shared with anyone else but Philip)

“I want to thank you for both the letter and the poem – I was moved to tears by the charitable and kind words of the former and the evocative power of the latter.  You have a great gift as a writer ——- more importantly you have a fine mind and a beautiful soul!  It has been a true pleasure to gain your acquaintance.”

There’s a place for me in this mad universe.

Full stop.

I can make you care about toast because that’s one of my superpowers.

Sometimes Parenting is Less About Teaching and More About Mediation


Topics of recent conversations with Max: video games, stem cell research, sexually transmitted diseases and related to that – unromantic but important conversations to have with potential sexual partners, abortion, why God should be thankful for the work the devil does, proofs that God doesn’t exist, video games, P.E. class and why it’s stupid, and Pippa’s infernal cuteness.

I told him he would have to take two years of a foreign language to graduate high school and asked him what he’d like to take.  He would like to take Russian.  I said I wasn’t sure that would be available at the high school level.  His second choice is French.

The SST meeting was canceled because Max’s grades are too good.  Everyone involved knows he doesn’t need special ed.  So we ended up having a meeting just between me, Max, and the school counselor to discuss how to help him raise his grade in P.E. from an “F” to passing.  The counselor told Max that he really respected Max’s strong sense of self, his confidence, his strong beliefs and his willingness to stand up for them (particularly referring to the battle of the Pledge of Allegiance).

Max just called me from school to bring him a new book to read for lunch period.  He also wanted me to take a photo of his wacky hair that he let a couple of girls put in a pony-tail on top of his head.  Oh, and he got another detention in PE for refusing to run the mile or whatever ridiculous run they’re supposed to do in a certain amount of time.  He said his legs were hurting.  The PE teacher doesn’t give a damn.  She says he needs a doctor’s note to get out of running.  Max thinks he’s going to get a doctor’s note when we go to the doctor next week so he can get out of running.  I had to explain to him that that’s not necessarily going to happen, that we’re going to talk to the doctor about the “leg pains” he’s had off and on for the last few years.  But he probably doesn’t have anything wrong with them.  Between him and the PE teacher I want to scream.

Max always seems to develop one adversarial relationship a year at school.  Every time it happens I want to yell at the adults who enter into these relationships with him.  Adults (particularly ones whose profession forces them to deal with a great many kids with a great many different personalities) should know how not to exacerbate such situations.  They should know how to diffuse a kid like Max without switching on his stubborn battle mode.  Yet every year there is one adult in Max’s school life who tries to fight him and force him to do their bidding rather than work with him to get him to cooperate.  I know the type of adult who does this and they are almost always exactly as rigid and stubborn and dictatorial in their ideals as Max is.  It makes me tired.  It makes me resent the teachers and/or administrators who engage in this futile battle of wills.  It’s unnecessary and results in their frustration which inevitably leads to Max getting in more and more trouble.  The teacher doesn’t get what he/she wants and neither does Max, really, but Max pays the bigger price in the end.

Max is never going to run that mile in the necessary time.  Ever.  I can tell you that right now.  So he’ll keep going to detention during lunch.  But this means he won’t eat lunch.  The PE teacher thinks the punishment is keeping Max from playing during lunch but he doesn’t play during lunch anyway.  He eats his lunch in the office every single day so that he doesn’t have to eat his lunch around other people’s food and so he can be close to the only clean bathrooms in the school that he’s willing to use.  So the real punishment is that detention (when there’s other kids sharing the room with him) forces Max to sit in a room with kids eating disgusting (to Max) food which makes him lose his appetite and so he won’t eat his own. Hunger and a little torture.

That sure as hell wouldn’t make ME behave, and I know it isn’t going to get Max to behave.  Every time she sends him to detention she’s making a bigger enemy out of him.  And me, because I get to deal with diffusing all his anger and dislike of his teacher when he comes home edgy with the irritating hunger of not having eaten anything for 7 hours.

I have come to the conclusion that I don’t really give a damn if Max flunks PE.  He is gaining nothing from that class just as I gained nothing from it when I was a kid.

I’m tired.  I’m glad it’s Friday.

My laundry is everywhere and our tense relationship with each other is taking up a lot of room in this house.  I suppose I should take a break from work to try to come to a mutual understanding with it.

I would also like to divorce my uterus whose services I no longer need.  Thank you for the child, good womb, but it’s time to pack up the equipment and turn off the services because we’re done collaborating.

I hope you all are having a less annoying Friday than I am!

Some Things I Love About Max

Some things I love about Max:

  • His enthusiastic pantomimes expressing how delicious the food on his plate looks when he knows I’m stressing about his eating and he just wants me to feel better.
  • His love of going out to restaurants and cafes.  He’s a routine guy like Philip and I are.  But he goes on these jags where he wants to try a new place and there are two criteria for whether or not a place succeeds or fails.  1) The presence (or absence) of Grape Italian soda on the menu 2) How good are the fries?
  • He’s a connoisseur of root beer.
  • That he loves fancy glassware with an emphasis on stemware.  He’s been wanting a martini glass because he thinks they’re cool.  I got him one.  Now he drinks his soda in his martini glass.
  • He thinks I’m pretty and not fat.
  • He thinks of The Walking Dead as “our thing”.  (He lets his dad watch with us out of kindness – but since we watched the whole first season just the two of us during our last week in Oregon when it was just him and me – he thinks it’s our special thing.)
  • He wants to be a consultant for the zombie apocalypse section of the Post Apocalyptic Kitchen project I’m working on with my friend Emma.
  • That he said this after our horrible doctor’s appointment last week “I’m a picky eater.  I’m not proud of it, it’s just a fact.”
  • He’s an avid reader.  He mostly reads humorous nonfiction (The Zombie Survival Guide, for example) and graphic novels like Bone and Usagi Yojimbo.  I don’t care what he reads as long as it isn’t porn.  He loves reading and it makes me really happy.
  • How he gets in a mood to hang out alone with Grandma or with me or with his dad.  How he likes to have alone time with the individuals he loves.
  • His parting comment the other morning on his way to school “You wanna know what would be really gross?” (me “always!”) “Vaseline toast”
  • His strong sense of self.  No one tells Max who he is, he tells them.
  • That he engages his Xbox online friends in debates about abortion, religion, politics, and the questionable (to him) ethics of eating meat.
  • That he thinks animals are equal to humans in worth and deserve to be treated that way.  (Yes, I think my influence can be spotted here)
  • That when he builds women characters in his video games he makes them regular sized people with pretty much regular sized boobs.*  (In character creation you can make bodies super skinny or fat and you can make boobs any size you want too.)
  • That he had the guts to tell the girl he liked last year that he liked her.
  • His curiosity.  He wants to dig under the surface of things.  His questions are interesting and make me want to be able to answer them.  This morning’s question is “Why does stevia have an after taste but regular sugar doesn’t?” (He’s eating a new protein bar that is partly sweetened with stevia to keep the sugar content down.  He likes the bar but has to drink something afterwards to wash the after taste out.)  I happened to have a jar of stevia that we grew and dried and my mom crushed into semi-powder.  We smelled it and noticed it leaves a sweet taste in your mouth when you breath it in.  Max had theories.
  • Max always has theories.

No matter what challenges he faces (and us with him) he’s an awesome kid and I love him.

*There is nothing wrong with big boobs but it’s such a stereotype that the women characters in video games have enormous breasts.  It just pleases me that Max is going against the stereotype.  You can also clothe them in next to nothing if you want, he also doesn’t do this.