Tag: parenting 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.

Under Water


What’s on my mind right now:

  • I worry that I’ve ruined my son by making him so comfortable and confident about being a person with mental illness that he has no motivation to work on his challenges and thinks that if people don’t like him exactly like he is then they can put a stick up their noses for all he cares.
  • My left hip has been hurting me for months now.  I rarely mention it to anyone unless I’m in a group of women discussing their hip replacements and pains.  Back of my head is the knowledge that it doesn’t matter if the joint degenerates and cripples me, I can’t get a hip replacement.
  • We still don’t know if we get to keep our house.  Silence from the bank is unsettling.  Philip keeps meaning to call for an update but I don’t think he wants to make the call in case it just means finding out we didn’t get approved for HAMP.  15 months of this uncertainty and counting.
  • My teeth need a major dentistry overhaul.  I apparently chose to take a vacation instead of taking care of my teeth and the gravity of that decision is only now sinking in.
  • When I don’t drink beer for four days it’s amazing how I’m just fine.  Except for the sleep thing.  It wasn’t really horribly bad until last night.  Last night was so bad I want to punch things today.  Insomnia alternating with nightmares.  Took me two hours to get to sleep, then when I did I kept waking up from the nightmares.  Nathan Fillion and I are no longer dream BFFs.  I will soon make an appointment with my doctor about the sleep thing because I’m committed to not drinking beer or any alcohol at least 4 days a week again.  It feels good.
  • Max’s eating.  Always there.  This anxiety.  I get so tired and give up.  Then I make a push for a while and sometimes get some fleeting results.  Then I’m exhausted and depressed from it so I give up.  The cycle is never ending.
  • Max’s sleep issues.  In our case the apple actually never fell from the tree at all, we’re apparently so much alike.  It makes me so sad.  So fucking sad that he should be at all like me.
  • Been feeling really depressed all summer.  It’s always like this in summer.  Worse than usual this year.  I’m really depressed all the time if I’m being totally honest.  Will talk to my doctor about this too.  I hate to have to up my medication.  Especially after what I experienced when upping my paxil.  I’m still wearing that consequence on my bones.
  • I’m being continually haunted by the first chapter in Jane Doe and know that the whole book has to be consistent with it.  I want to dive in.  I am feeling itchy to bury myself.  It’s calling out to me that it’s time.  It’s ready to be written.  Can’t scratch that itch.  Canning season is here, my family needs me, I can barely find the time to even cook anymore, work needs me, and my head is too cluttered.
  • I’m also scared of where that book is going to emotionally take me.  I know in my gut that it’s the one that’s going to scream the loudest if I don’t bring it out into the light.  It’s a dark dark place.  You can’t ignore what you were born to do because if you do the rest of your life will corrode around you.
  • Scared of how Max’s mind is practically an adult’s mind and yet his emotional state is younger than his years.  Scared of the stark divide between his toughness and his vulnerability.  I don’t know how to raise him.  I think I may already have ruined him.
  • Skin issues bother me and nag at my head.  My skin hates me.  Max’s skin is sensitive too.  Every time a mysterious rash appears or my athlete foot returns (I think that’s what it is) or rough patches show up I feel sharp anxiety as though it is the signal of the end.  Maybe a sign of the apocalypse I don’t even believe in or maybe a sign of physical decay or oncoming cancer.  I know it’s irrational.  That does not make me feel better.

Being a mentally ill mother is not a good gig.  I’m heartbroken when I realize the things I’m not doing for Max because I’m too tired to do it or too stressed to cope.  I should be enforcing more chores on him and creating more independence in him but his challenges mean that chores require 100% supervision from me and I don’t have the energy to do that when it’s so much easier and faster and less frustrating to just do things myself.  I know it’s a disservice to him but I just don’t have it in me.  So when people criticize him for being “lazy” and for not doing anything himself as though this is some terrible shortcoming in him I want to scream at them to leave him and his character the fuck alone because it’s MY FAULT AND MY SHORTCOMINGS they’re criticizing.

Then I just want to tell everyone to fuck off.

For god’s sake, this is not a cry for help.  This is just sharing.  Share back if you like but please don’t try to “fix” my problems.  I am not helplessly experiencing my life.  I have doctor’s appointments to make, I have sleep to try catching, I have my child’s therapist appointment to make.  I have medications to take and possibly more that are needed.  I don’t want a list of things I should do to help myself or my kid.  I’m a pro at being mentally ill.  I know that this is just part of the cycle.  I know how much in my head is irrational.  I know how much my brain blows up my worries, my fears, and my depression and projects them on the dirty back wall of my brain.

What I want is support.  What I want is to hear that others sink too.  I want to know that other parents drown under their responsibility.

I want to not be alone with all this in my head.


The Lost Month

February was a lost month.  I was under water.  Now everyone is hailing spring and I’m wondering where my winter went?  There was a dust of snow and a frisson of frost that limned my hair and lit the dark.  The third draft is thoroughly trashing my ass and I have to declare the match a complete K.O. for the draft.  My back is broke and I wonder if I’ve given the best I have already or if there’s more to milk from my shady head?

Today my boy started medication for his anxiety and every surface feeling is roughed but underneath my sadness and my own anxiety I know that this is the least dangerous course to take.  I’ve asked him if I may continue to discuss his mental health issues on my blog and he asks me why I wouldn’t – I tell him that some people like to keep these things private and that he’s at an age where I feel this is his choice to make, not mine.  I have his blessing.  At least for now.  If he changes his mind I will honor it but I can’t help feeling pride in his attitude that this is just the shit we crazy people deal with and there’s nothing here to be ashamed of.

Every time he suffers the same as I’ve suffered I feel shame for having brought him here.  It isn’t a case of luck of the draw, it’s a case of genetics.  The map was always there if only I’d looked before I chose to bring someone into the world.

I’m trying to wipe that whole chalkboard of graffiti clean.  His medication is an SSRI and my own quality of life has been so vastly improved by taking SSRIs that I indulge in hopes that this will help him too.

Can’t help but be scared.

Meanwhile – I’m sick to death of this country stripping funds from health care and education.  What’s happening in Wisconsin is shocking and disgusting.  You can’t keep stripping money from education and expect it to get better just because you make testing a focus of the curriculum.  I’m sick of stupid people in this country deciding how best to educate our children.  I’ve known a lot of teachers and I’ve known very few who weren’t working their asses off to make the best of what they had.  The education of people isn’t, in my opinion, just teaching them their numbers and letters as Laura Ingalls Wilder’s mother taught them.  Critical thinking can’t be taught by people who don’t know how to think critically.  The teachers who’ve worked with my kid have been amazing.  I can only name two who didn’t like Max and who gave him a real raw deal.  The rest of them have bent over backwards to help my special needs kid succeed, this is without an active 504 plan.

Educators are the backbone of any strong civilization.

I’m also angry about GMOs.

I’m also really put off by Lady Gaga’s meat dress.  That’s old news but I’m not sure I mentioned that before.

The food trend of mega-meat eating is tiresome.  Bacon is still hot but now it’s really important that you include it in every meal with other meat.  Bacon is a meat condiment.  Blood pasta (pasta made with pig’s blood), trotters (can’t believe I know what this is), pork wrapped in more pork, steak stuffed chicken, steak stuffed with pork and wrapped in fois gras.  I get it, there’s a big fat back-lash against the growing vegetarian rhetoric, but enough is too much!

Fashion is experiencing the same back lash in the form of hideous furs everywhere you look but I don’t want to talk about it anymore.

What if I’m only a second draft quality writer?


We all have our place.

Mine is in bed.