Wednesday, March 28, 2012

Special? I don't think so.

This subject has been bubbling around in my head off and on for a decade, sometimes with anguish, sometimes with frustration, sometimes with a snort and an eye roll.  I've siphoned it off a few times in the past, but I think it may be time to let it out.
  • "God gives special children to special parents."
  • "It's good he has you for a mom.  I couldn't do it."
  • "You're his best advocate."
No, no, and no.  Words like these, though meant to comfort, hurt.  Parenting any child brings fabulous joy and inexpressible love.  Parenting a child with an autism spectrum disorder adds exhaustion, frustration, confusion, consumption of all resources, and, often, denial of the self.  The fight for services -- educational, therapeutic, recreational -- is overwhelming.  The need to fight for services is unconscionable and pervasive.  (Truly, I've never heard anyone say that her child got what he needed automatically, the first time around.)

Parenting a child with an ASD means having to become a specialist in ASDs, OT, PT Speech, the insurance system (including "creative" diagnostic coding), federal, state, and local special education laws, the school system, medications, myth busting, alternative therapies, allergies, data collection, urine collection...  Parenting a child with an ASD means having to become a specialist in these areas NOW.  Not tomorrow.  Not when you have time.  Not when it's convenient.  And certainly not when someone hands you a manual.

Parenting a child with an ASD means being on call 24 hours a day.  It means daily, weekly, monthly appointments with doctors, therapists, school teams.  It means public and private meltdowns.  It means celebrating every little accomplishment as if it were a major step because indeed, for our children, it is one.  It often means the loss of friendships, family ties, and dreams.  It means daily stress to levels many parents experience only a few times a year.

I don't prefer to think that God wants me to be exhausted, frustrated, confused, depleted, or denied.  I don't believe I have a talent for caring for my child more than other people care for theirs.  And there are times that I resent having to fight against the prejudices, against the systems, against cavalier attitudes.  There are times that I resent the drains on time, money, family.

I feel fabulous joy and inexpressible love.  I am thrilled by and grateful for every step forward my son has made in the past 14-plus years.  I don't bask in the "specialness" of parenting a child with autism.

To save for another day:
  • "He'll eat it if he's hungry enough."
  • "Let me have him for a couple of weeks.  He'll straighten up and fly right."
  • "Was it something you did while you were pregnant?"


Monday, March 26, 2012

It looks like my daughter is missing STEM.  At the same time, she came home today with only one homework assignment, and she had finished it in class!!  The afternoon and evening are hers with no need to clash over homework!  We may clash over other things, but homework won't be one of them.

Saturday, March 17, 2012

Endings, Part 2

So ends my daughter's first week at her new middle school.  When I wrote the previous post, I figured this one would likely be titled, "Beginnings."  Truly, though, we didn't have much of a honeymoon period.  Maybe a few hours each of the first couple  of days.  The rest is mixed:  nasty getting up in the mornings, nice communicativeness later in the week, evening meltdowns.  She even refused the Cheez-Its (not free of gluten, casein, or soy) that were provided as a snack during state testing last week -- very difficult for her, yet she did it!  But she's still all over the place.

Typically, my daughter has tantrums.  Recently, we've seen a lot more meltdowns than tantrums.  When "melting," she's likely to tell us how bad her days were, that she misses STEM, especially her teachers, how she hates her new teachers.  When she's open, she tells us about the cute boy who asked her to sit next to him at lunch, about the book (A Wrinkle in Time) they're reading in Language Arts, or that the Language Arts teacher said her answers were "amazingly well written."  She is all over the place.

Me?  I happy cried that she had done her classwork and had done it to her potential.  That she shared that part of her day with me was icing on the cake.  Last night, though, came a meltdown over not being able to make work a flashlight she assembled from an Altoids tin, batteries, duct tape, a Christmas light, and a paper clip.  The thing went flying across the room, and she sought me out to tell me that I was to blame for giving her faulty supplies.  Not to repeat myself or anything, but she's just all over the place.

While we're having tons of stress over this transition, it is just so wonderful that she has no homework this weekend -- not that she did it when she had it, but there are no assignments.  No homework stress.  Nothing pending, nothing due.  There is no homework hanging like a sword over our heads, and that ending makes me grateful.


Thursday, March 8, 2012

Endings

Tomorrow is my daughter's last day in the STEM Program.  She has the ability to do every piece of work.  At this moment in time, she doesn't have the ability to handle the workload without supports.  She has no supports.

Back when my son was in 2nd grade -- "the year we don't talk about" -- his doctor at Children's National Medical Center said, "Even if school were to change tomorrow and do everything they were supposed to do, he still wouldn't be successful because he's stuck.  We need to help him."  So we put him on a "big guns" medication with the potential for serious side effects.

It sort of feels the same to me right now.  It feels like even if every executive functioning and social skills support were to be put in place tomorrow, even if I could snap my fingers and enable her to regulate her emotions, my daughter couldn't pull herself out of the hole she's in academically (for not doing her work) and socially (for some poor choices and the lack of skills to work things out).  She's stuck.  So we're doing everything we can to help her.

I can't say that pulling her from STEM is the right choice, nor can I say that staying in STEM is the right choice.  They are choices with positives and negatives, neither tipping the scale one way or the other; for every argument I make for either choice, I can produce a "yes, but..." counterargument.  The situation is very unsettling -- we just don't know what's right.  And in lessening her workload by moving her to general education classes, we haven't guaranteed that she'll get unstuck; we haven't taught her any skills.

I told my son that his sister was transferring out of STEM, mostly because of the workload.  His response?  "The STEM6 workload was too  much for me, too.  I just kept my mouth shut."  Though it hurt our family life tremendously, STEM6 saved my son academically and socially.  It appears to be killing my daughter.


Tuesday, March 6, 2012

Whiplash

I know it's nothing new to lots of parents out there, but good gosh-a-monkey, if my daughter would put even half the energy into doing her work that she puts into getting out of doing her work, she'd be finished all of it in no time flat with no blows to her self-esteem, no drama, no ugliness.

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If my daughter doesn't (won't or can't) get up to go to school, I'm supposed to call school and have the "truancy officer" come get her.  I did that once; the principal and the academic dean pulled up in our driveway to take her in.  How embarrassing all the way around.  I called another time, too, on speakerphone, but she hauled her bottom out of bed before I could even make the arrangements.  Two nights ago she didn't go to sleep until well after midnight -- had a bout of bedtime wildness -- took her an hour to fall off after getting in bed.

Yesterday  morning I had to call the school again.  The truancy officer was out sick, they said, and wouldn't be able to pick up my daughter, sorry.  So here I've told her what the consequence is, made the phone call, and nothing.  No getting up.  No getting to school.  I took her phone away (unsuccessful tantrum to try to get it back), but what did she learn?  If she doesn't budge, she can sleep until 11.  By the time she got up, I would have been driving her in -- in the snow -- in time for the last two periods of the day.  Those periods are a double block of Reading/Language Arts, a class she spends her time getting out of, usually by means of going to the nurse, but wandering, socializing, or staring off into space will do, too.

I know it's my job as her parent to get her up, not school's job.  I just can't always do it.  She doesn't want to be there.  She doesn't want to be anywhere else, either.  And the meds changes are making her, and by extension me, loopy.  Add to that how badly she went off her GF/CF/SF/CF diet this weekend and we've got the proverbial recipe for disaster.  Again, it's my job to keep her on the diet, but truly, I didn't know that she would take the money she asked me to donate for leukemia research and spend it at the school's Idol show on soda whose first listed ingredient is corn syrup.  Or M&Ms.  Or Cheez Curlz.  Or Skittles.  She firmly believes that these dietary changes are completely unnecessary.  And I, being weak, got pizza -- real pizza -- the next day.  She ate it for dinner, lunch, and dinner again.

Based on the behaviors we then witnessed, pizza will not be on our menu for quite some time, though I'm just as likely to blame the corn syrup.  Up, down, up, down, sweet, ugly, sweet, ugly all within the space of minutes.  To quote Bella Swan, her mood swings are giving me whiplash.

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Last night we all went to bed late again, but it was an earlier late than lately -- I was pretty pleased overall!  Twenty or thirty minutes later, my daughter comes into my room quite wide awake and wants to discuss "dropping out of STEM ASAP."  I went to bed at 11:30; she was still up at 1:30.