Wednesday, December 28, 2011

Maybe it is, maybe it isn't

Based on the past one-and-a-half, almost two, weeks of very few incidents, I'd say that there's a strong possibility that our living free of gluten, casein, corn, and soy is having a positive impact on my daughter.  Additionally, we had been not only incident-free but also witnesses to a good number of positives.  I can't say it's the diet for sure; there are too many variables.  But it certainly could be.

This entire holiday season we resisted Christmas cookies, stuffing, and pie.  My daughter even turned down the candy my mother offered her, saying that she "couldn't have that" no matter how much she would have liked it.  However, while away from home, we ate fast food last night and the night before.  Our downfall was Asiago Ranch Spicy Chicken Club sandwiches, barbecue sauce, and brownies!

Last night and today brought a return of the negatives:  aggression, distractibility, high frustration levels.  As I said, there are too many variables, but I wouldn't be surprised if this first full-blown breaking of the diet were part of it.  Now the job will be to stay on track with the diet, see if we can regain some peace. 


Visiting Mom

I went up to visit my mother in the nursing home on Monday, the day after Christmas, and stayed over one night.  It's 175 miles, so I can't make the trip on a whim.  While my daughter and I were there, my mom was relatively lucid.  They sorted through pictures to put on my mom's bulletin board, and we went through her clothes and organized her wardrobe and chest of drawers.  And when we found her stash of candy, she said, "Give me that!" and proceeded to munch away until her dinner tray arrived (except for the root beer barrels -- those went straight in the trash)!

My mom is starting to lose language, sometimes able to circumlocute to get her meaning across, sometimes giving up, saying, "Don't listen to me; I don't make any sense."  She hasn't lost her hearing, and trust me, she hears everything.  She can hear the food cart coming from around the corner and down two hallways!  She is also distinctly bothered by the sounds and movements of everyone there, whether staff, patients, or visitors.  The lack of control and privacy inherent in nursing home settings is debilitating to her, and her own mental health history intensifies her anxiety and responses to it.

She goes to the cancer doctor again today, so we should know more soon.  The current statement of her medical condition is that she has Stage 4 bone cancer that is progressing rapidly.

I saw my sister, brother-in-law, and brother on this trip.  We had some things to talk over and some decisions to make.  My siblings are both geographically closer to our mother, and they've borne so much more of this, visiting, transporting, being there.  They're exhausted.

After meeting with them and visiting my mom, my daughter and I went back to my mom's condo and took care of some housekeeping projects.  We organized the linen closet, moved the durable medical goods out of the living areas into what is now a storage bedroom, made it closer to ready for my uncle, who is coming to visit in a few days.  We also found a few more things to take to my mom at the nursing home.

We stopped in to visit her quickly on our way home, wished her a happy birthday (early), and drove home in the rain.


Thursday, December 22, 2011

Dying

I wrote that my mother is dying of cancer.  She's now out of the hospital and into a nursing home, permanently.  The original time frame was six to 12 months.  I don't know what it is now, but I can tell you that institutionalization does not agree with her.  Withdrawal, paranoia have already started.

I grieved for the loss of a mother figure when my children were born and the relationship wasn't what it should have been.  I'll probably grieve again when she passes.  But the withdrawal?  The paranoia?  The "unreachableness"?  These are bringing back some serious, intense "flashbacks" to my childhood, to my mother's taking her bedtime meds earlier and earlier in the day.  To her taking whatever else was in the cupboard.  To watching her check out in front of my eyes even though her body was right next to me on the couch.

These are not good memories.  They make me sad for her and the pain that has been with her for years; they make me sad for me and the issues of abandonment they bring to the surface.  They even make me wonder what I was lacking that I wasn't worth her staying around, worth her mothering.  Which brings us right around to what I know:  It was her mental health issues, not me.  But underneath scars, nerves can hurt.

Now she's dying.

Sunday, December 18, 2011

Pizza

You know we've been gluten-, casein-, soy-, and corn-free since November 21st.  While that's only four weeks, it feels like forever.  Some of my daughter's test results are in:  antibodies present for casein (mild), soy (medium), and corn (big-time).  Nothing for wheat, so we'll challenge that in a bit.  (As the doctor said, stuff her full of bread and see what happens!)

My husband and I are making lunches that use up foods in the pantry and freezer, but we eat most of the foods that my daughter does.  She has had only a handful of foods that she shouldn't have, all of them at school, and for the most part is sticking with the diet very well.

Yeah, well, and I'm making our own candy, marshmallow fluff, bread, and graham crackers, among other things, just to get her to buy into this.  I even made baking powder.  I'm seriously considering buying or borrowing a bread machine.   Yesterday, I found myself in the appliance section of a department store getting misty over a Kitchenaid mixer (sale priced at $499).  Today I ordered a pizzelle iron.

My daughter went to a birthday party yesterday.  We weighed the pros and the cons, and we went ahead and gave her permission to have a slice of pizza and a cupcake.  And while she was gone, we picked up a pizza from Papa John's.  (Shh...  My husband even drove home with the windows down so she wouldn't smell it in the car later when he picked her up.  Brr.)

It didn't quite work out the way I wanted.  Two slices of a food I haven't had in a month -- a food I love -- and I'm excusing myself to go be ill.  Twenty-four hours later and I'm still not right.  I was doing this diet just because I love my daughter and wanted to be supportive.  (And, to be honest, because if there's "forbidden" food in the house, she's likely to make a beeline for it.)  Now I may be doing it to avoid hanging over the toilet.

Saturday, December 10, 2011

Rains and pours and forwards and backwards

We've been having a tough time lately.  We've had an increase in the uglies, and consequences are ramping up.

At the same time, we've seen positives that are so very encouraging even if minute by some standards.  Door holding, thanks, picking things up, acknowledging another viewpoint may all seem like little things, but in a house of self-focus, they're huge.

The ups and downs, though, are a trial.  I'm starting to believe that the full moon really does have a negative impact on my family.

Today, I must say, added a new level:  My mother is dying of cancer.

Thursday, December 1, 2011

Pressing issues

At what point do you press charges against your own child for destruction of property or assault?

Tuesday, November 29, 2011

But still...

Thanksgiving vacation went well.  For the first time in a really long time, I felt calm enough to relax.  That's a relative calm given that we were only three days into the dietary changes and I wasn't in my own kitchen, but still...

It probably helped, too, that my husband and son drove to New Jersey separately and went home the next day while my daughter and I stayed until Sunday...

That we were visiting my daughter's favorite relatives surely didn't hurt, either...

Two loving dogs added to the package...

I thought we were doing pretty well... but still, it wasn't enough for her.  Sigh.

Friday, November 25, 2011

GFCF/SFCF

We took my daughter to a specialist on Monday.  He ordered four tests, but in the meantime, she is now gluten-free, casein-free, soy-free, and corn-free.  She is also supposed to be free of artificial ingredients, preservatives, and any salicylate-containing items, including berries, oranges, and tomato products, but I just can't do that part yet.

Part of me wishes that we could pack up and live in a remote mountain cabin for a few weeks to make this switchover (while someone else clears out and then restocks the pantry, fridge, and freezer before we get home), but it's not practical.  (Certainly not with the Science Fair coming up next week!!)

However, we have gotten halfway through our Thanksgiving week without a setback -- and only two "I hate this!" episodes -- so there's a lot to be thankful for!  I'm thankful for every GFCF/SFCF meal and snack consumed.  I'm thankful for a credit card not yet maxed out so that I can purchase these oh-so-expensive foods.  I'm thankful for the internet that lets me get started right away.  I'm thankful for a smart phone that lets me look up questionable ingredients while reading labels in the grocery store aisles.  I'm thankful for family and friends who share there knowledge and encouragement.

Here is tonight's dinner:




Rice macaroni with non-dairy cheese, salad greens with salsa, veggie chips, and GFCF/SFCF pizza, followed by a GFCF/SFCF "ice cream sandwich."  She ate it all!  So did I.

I would be so grateful for prayers, prayers that she would continue with this diet without incident, prayers that the tests will be useful, prayers that we find interventions that work, prayers for our family to function again.

Friday, November 18, 2011

Taking the plunge

We're taking our daughter to Baltimore next week to see a pediatrician who, according to other parents, can help us figure out the gluten/casein question as well as any vitamin/mineral issues.
Dear Lord,
Please guide us as we take the biomedical plunge.  Please help us to ask the right questions, to offer the necessary information, to hope without desperation, to trust Your plan for us.
Please guide the doctor to hear us.  Please open his heart and his brain to use his training and experience fully.
Please, Lord, let him not be a shyster.
Amen.

Thursday, November 17, 2011

The G-word

I have so much research to do.  My daughter has a first cousin with Celiac Disease and another first cousin on the other side of the family with gluten sensitivity/intolerance.  Is there a genetic component to it?  Could gluten/casein/other sensitivities be at least a partial cause of her issues?

How do I trust biomedical tests and interventions?

Sunday, November 13, 2011

Muffler

I want to write all the positives.  The negatives drag me down.  Her privacy muffles my voice.  Her needs tighten like a fist around my heart.  The intensity of every waking moment takes all my energy.

Though she doesn't have an autism spectrum disorder like her brother does, her issues are just as pervasive.  Like him, there is no area of her life unaffected...

We continue to live moment by moment, buoyed by the positives, drowning in the negatives.

Friday, November 11, 2011

Moments

Living moment to moment, some good, some not.

Playing together successfully stopped years ago.  Playing together at all stopped months ago.  Last night and again tonight, we -- all four of us -- played Scrabble and keep-away.  My kids have played Scrabble at camps, but we've never played it as a family.  We used the deluxe edition with turntable that my brother gave me decades ago, but we didn't use the rules.  I think this rulelessness irks my husband, but it makes for some lively tile laying!  And if I cringe with every wobble of a lamp during keep-away, oh, well, we're having fun!

Even though last night it transitioned badly, tonight, so far, hasn't become the crisis it could have been.

As I wrote the above, we moved into crisis mode.

Wednesday, November 2, 2011

Tuesday, November 1, 2011

Good place/bad place

You know you're in a good place when you say no to a child and the child doesn't hit you.

You know you're in a bad place when you say no to a child and you're grateful the child doesn't hit you.

Saturday, October 29, 2011

Green-eyed ugly

I have a Facebook friend who is forever -- or so it seems to me -- posting photos of herself, her husband, her friends, sometimes her kids, on vacations or at parties or other events.  Lots of alcohol, smiles, hugs, "a good time being had by all."

It makes me so mad.  I'm envious.  We go few places.  We do so little.  Every moment feels fraught with the tensions of my family's crises.  How can this woman, mother of a child on the spectrum, do all these fun things?  Why are we so trapped?

Most of the time when I envy my friends, I don't begrudge them their opportunities.  I don't want them not to have these fun times.  I just want them, too!  (Mostly.  I could live without the trips to the raceway or the yearly opening of the Tiki Bar that some friends attend -- nice but not my thing.)  When a different friend went on a cruise with a bunch of her girlfriends a few weeks ago, I thought, "How nice for her!"  I meant it; I was happy that she was able to get away.  I also thought, though, "Wouldn't it be something to get away like that!"

I don't know why this other friend's good times set my teeth on edge.  I've thought and thought about it and can't find a reason.  They just do, and it feels ugly to have this reaction again and again.  I don't like it.

So friends, if you're in a praying mood, would you help me out with prayers to let it go?  Peace would be nice, too.  Thanks.

I want my kitchen back


Have I mentioned how much I hate the Science Fair?  For my children, it's mandatory.  My son is participating for the fourth year; it's my daughter's first year.  Both of them have really good topics, and with three years under our belts, we have a reasonable handle on the procedures.

But I hate it.  The stress of meeting the due dates makes me nauseous.  I've already blogged about how much I disagree with the final due date's being the Monday after Thanksgiving.  Last year, my son and husband had to stay home from the family gathering because he wasn't done with it the Tuesday before Thanksgiving, and I wasn't dragging his presentation board across four state lines to have him holed up in a corner of his aunt's house working on it.

With Thanksgiving looming, my kitchen has been taken over by bins and pumps and pipes and tubes and bits and pieces and super glue.  We've taken to eating in the dining room, and it's not a major holiday!  It wasn't this bad during the renovation two years ago.

Really good Science Fair ideas are so much work.  It's fun to think of cool ways to help the environment or use technology, but  nobody wants to do the not-fun parts, or rather, they'll do them "later."  Well, later is now, ladies and gentlemen, so grab your clip boards and slide rules, 'cause it's data time!

(Have I mentioned how much I hate the Science Fair?)

Tuesday, October 25, 2011

One step


Love  Love  Love  Love  Love

About a year ago, give or take, I bought inscribed sterling silver rings for my daughter and me.  Hers was to remind her every day how much I love her.  Mine was to remind me to persevere, find the answers, not give up.

She wore hers every day but lost it in the Patuxent River several months ago while canoeing on a school field trip.  I lost mine not long after.  I didn't know when I lost it and had no idea, therefore, where to look.

Today I found it.

The journey of a thousand miles
begins with one step.


Sunday, October 23, 2011

What became of me?


I was hit by a wave of loneliness so great I bowed under its weight.
The sadness of the undertow dragged me out to sea.
Adrift, no harbor, no companion,
Wondering what's to become of me.
What became of me?

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ 

Today we all sat down together for supper.  That doesn't happen very often, usually due to schedules but sometimes by design.  Today it happened.  My daughter brought a book to the table.  I don't typically mind, and she's not the one who typically brings one.  Tonight, she was engrossed, again, not typical when everyone else is present.  My son answered, "I don't know," to my question designed to involve the family in a nice discussion, and he ate his dinner.  My daughter read and ate her dinner.  My husband ate his dinner.  Nobody said another word for the entire meal.  I didn't eat my dinner.

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ 

I've always known that my son has little use for conversation.  I've come to the conclusion that my husband is embracing texting me for similar reasons.  When my daughter suggested to me a few weeks ago that I should stop talking, I had an epiphany.  I started listening to myself and thinking about what I was saying.  I do almost all of the talking and asking of questions.  They don't volunteer information or engage in conversations.  Shut down in meaningful communication of family members, all I have left is the role of orchestrator and arranger of schedules, homework, meals, events, etc.  What I mean as requests for the information I need to run the house, they hear as nagging and respond in kind -- or don't respond at all.  Wife.  Mother.  Caregiver.  Gone.  If they don't need me to be those things for them, why are we falling apart?

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~  

How can I be alone in a house full of people?
What became of my family?
What became of me?

Tuesday, October 18, 2011

Thanks for the prayers, friend(s).  We did a little better than "getting through" Friday after school and Saturday.  In fact, Saturday yielded some quality family time -- as much as we are a family.  Sunday was touchy; I'd say we got through it with patches of OK.

We get some in-home help this week after last Friday's intake meeting.  I don't know what to expect, but the case worker and my daughter have already picked two goals.  I'm just going to play it by ear and be as receptive to audibles as I possibly can be.

We saw our fabulous Children's doctor today.  She laid it on the line.

Continued prayers appreciated.

Saturday, October 15, 2011

No title

We have had quite possibly the worst couple of weeks ever.  That includes my son's 2nd-grade year, which we don't talk about.  That also includes our home life when my son was in STEM6, not allowed to have a disability (like that restriction made his Asperger's go away), with homework taking 4-6 hours a night and someone having to be with him every minute of those hours (not because he didn't want to do the work but because by then, he'd had enough and just couldn't do it anymore).  That was the year of his first Science Fair, too.

I've been having flashbacks.  Really.  Flashbacks.  I had no idea that a person could have flashbacks to one's child's childhood.  So much of what's going on now has similarities to what went on then, but the biggest one is the stress.  I have never, ever, felt this much stress in my life.  Not even last month when my daughter was in the hospital.  That was awful.  This is worse.

She went into the hospital for a week, but when she came home, I feel as if we were left high and dry, without the tools we needed to effect a change.  The discharge summary gave me little to go on, just a bit of "why we saw your child" (I know why; I brought her there.) and a computer-generated monograph of generic diagnoses' descriptions.  We were supposed to have in-home help within 5-10 days of returning home.  Twenty-six days later (yesterday), we had our intake meeting.  We instituted a behavior modification plan that was working until yet again, she found a way around it and got a response out of us, reinforcing her negative behaviors and ramping them up to the point of no return.  Our fabulous doctor at Children's is still 90.6 miles away.  I called the meds doctor, but he needs to talk with our fabulous doctor before getting back to us.  I tried to get a parent-teacher conference last week but can't get one until this week.  (Had the school budget not been cut, resulting in furlough days, I would have had an automatic conference on Columbus Day.)  I put in a request to a special education supervisor to see if these issues can be addressed; she's out of the office until this week.

We're living moment to moment.  How can we get through the next half hour, the next few minutes, without it all falling apart, without losing our daughter?

We need help.  We need it now.  We need solutions, not more getting through.

What are we going to do?  We hold on, stressed beyond belief, but holding on.  And we ask for your prayers.


Thursday, October 6, 2011

Duct tape

Over at Laughing at Chaos, today's post is about the passing of Steve Jobs and the effect of his life and his death on Jen and her family.  Pretty powerful; and sad and encouraging at the same time.

That post got me to thinking.  See, right now, I'm not at home.  I had to leave.  I just can't take one more night of being at home watching my daughter not do her homework.  I'm supposed to let her fail on her own so that she'll see the failure and realize that she has to do better.  Ummm...

I'm just not convinced that this is what she's learning.  And since my gut is telling me that this is wrong, I'm having trouble.  I'm doing it, but it stresses me to the nth degree.  (We're doing other things that are difficult, but I believe in them, so I can do them.  This just isn't the same.)

So last night while I was out at that NAMI class I'm taking, my daughter took out a roll of duct tape and made a wallet, complete with coin purse and ID slot.  She didn't do her homework.  This afternoon, she took out 2 rolls of colored duct tape, made strips, and wove them together to make a purse.  She hasn't yet done her homework.  She's been home for almost six hours, and nothing has been completed.  She has six barely started assignments open on the dining room table and a whole bunch of zero grades on the school's tracking program.  And a wallet and a purse made from duct tape.

I left.  Her father can watch her not do her homework as well as I can.  I'm sitting in the local coffee joint catching up on blogs, and I read Jen's post.  She posted this from Apple:
Here’s to the crazy ones. The misfits. The rebels. The troublemakers. The round pegs in the square holes. The ones who see things differently. They’re not fond of rules. And they have no respect for the status quo. You can quote them, disagree with them, glorify or vilify them. About the only thing you can’t do is ignore them. Because they change things. They push the human race forward. And while some may see them as the crazy ones, we see genius. Because the people who are crazy enough to think they can change the world, are the ones who do.
I can only hope that my daughter may one day turn that duct tape ability into something to “push the human race forward."  It's a different perspective that I wouldn't have gotten if a I hadn't run away from home tonight.

Wednesday, October 5, 2011

Private vs. public

Privacy.  Interesting concept.  Not so much of it anymore.  Except when school uses it as a reason for parents not being able to observe a program as they try to identify appropriate placements for their children.  But I digress.

Privacy.  I can't see that I've ever been particularly private about my son or his dx or issues or education.  Except to the newspaper reporters twice, once a long time ago and once again today.  I was contacted because I coordinate the Autism Spectrum Support Group of Southern Maryland.  I answered the reporter's questions except those about my son, saying only that he's in high school and that we've been dealing with the school system for 11 years.  But the rest?  I answered.  Sometimes freely.  Sometimes very, very carefully.  How do you say it straight but without offending?  It's a flat-out fact that though there have been improvements in our county's educating students with ASDs over the past few years, there is still room for more!  And oh, the need for more!

Privacy.  The support group maintains a closed listserv for parents and caregivers of people with ASDs.  It's "closed" because of the privacy and dignity of our children.  But I think I can share here that one of the threads that has been going on the listserv is about how the three counties here, but especially my county, have not only been denying the medical label of an ASD -- they can do that -- but have also been saying that the child doesn't have any educational needs and therefore won't receive an educational label of autism or special education services.  Our children are impaired in the social arena.  As soon as you add another person, it's social!  To be prepared for further education, employment, and independent living, our children must be taught social and organizational (including job) skills.  If they are "OK" behaviorally or academically, that doesn't mean that they don't need.  (Some people, especially from one of the other counties, have said that they are being told that their school system won't do much of anything before 3rd grade, thus allowing children to suffer needlessly.  And illegally.)

Publicity.  I think it's time to act.  Parents can contact their SECAC representative (CACSE rep here in my county).  When it's clear that this is not a personal problem but rather one that impacts a group of students, SECACs can advocate for change.  At a minimum, SECACs can cast a light on it and make it public.  Once uncovered, it can't be hidden again.  Once uncovered, the chances that a school will continue the practice are reduced.  Once uncovered, parents struggling with the ASD needs of their children won't be blindsided by a practice that denies children the help they need.

Tuesday, October 4, 2011

Thursday, September 29, 2011

Specifically

As we wait for my daughter's chemistry to adjust itself from the meds increased (or stopped)  a few weeks ago, I find myself praying very globally and very specifically.

When situations arise that are very rough, I pray, "Please, God.  Please, God.  Please, God."  I have no other words, only the feelings of being overwhelmed, impotent, at the mercy of skewed logic.  At their worst -- and if I'm alone -- I start singing the hymns that remind me that I can "cast all my anxiety on Him":  "Sweet Hour of Prayer" comes first, though I usually choke out the words on desperate sobs and have to sing it a few times through before I believe it, trying all the while to breathe.

Just now, however, I found myself praying quite specifically.  My daughter is doing her homework (a good thing, really), but the assignment she's finishing is the last two of six tutorials on a CAD software program that she will use throughout the school year.  The software, in my opinion, is not meant to be used by children, and the tutorials seem to leave out some vital steps -- or at least pertinent helpful hints.  Oh, and there are glitches and patches and fixes, but only if you know they are glitches and not missing steps might you think to ask if there are patches or fixes.  And if you ask, you may or may not get the fix you need.  (We went through this once before when my son was in the same class three years ago.  He barely made a passing grade on any piece of an assignment that used this software.  At the time, I thought it was just him -- he doesn't really like to follow the directions and tended to skip steps -- but glitches are glitches.)  So now, as my daughter's frustration mounted and the growling began, my stress levels rose, and I prayed, "Please help her solve this.  Please help her be brilliant.  Please help her find the error, identify a solution, solve it, and move on.  Please help her to stay calm.  You are God.  You can do this."

Again, as there is a moment of peace in a prayer answered, I will return to the global, "Thank you, God!" and hit Publish.

Cemetery

Today I went to visit Matthew's grave.  I go about once a month for my friend, who has to be out-of-state for her husband's military assignment.  I didn't go before she moved away; I never felt the need to.  I always thought of Matthew as being in Heaven.

Two things struck me today.  The first is that I felt so sad when, as I was winding my way through the pretty grounds, I recognized Matthew's grave from far off.  It just seems wrong, somehow, to visit him there and to be so familiar that I can spot his little headstone and bench from around the bend in the cemetery.  Yet at the same time, I was comforted that I could see it, know where I was, know where he was, because, despite my wishing it were different, this is where he is on earth, and I want to visit him.

The other thing hit me tonight as I uploaded and forwarded the photos I took for his mother:  I don't remember Matthew by the photos of him.  I think of him as the photos I've taken of his grave since I started visiting in June.  That is disturbing.  I don't like it.  So I called up my "Angel" folder and looked at the pictures of him that I gathered that first year:  Matthew alive, his eyes open; Matthew alive, being held by his father and prayed over by friends and family; Matthew gone, held by his father, grieved by so many; the photos taken by Now I Lay Me Down to Sleep, so beautiful; Matthew's casket, too small; the mark of an angel's wing on the church sidewalk; his marker at the cemetery on a cold day in January; his headstone.  Then the card sent out to mark his birthday:  "One year ago, our lives were blessed with an amazing miracle.  We will never be the same, but are so much better for the blessing of his life.  Thank you for loving him with us."  And more bittersweet, with the photos of him, his feet:  "...Matthew... 11/28/09 - 11/29/09  Our Gift from God."  There he was.  Matthew.

I love that boy.

Saturday, September 24, 2011

Mum and not mum

I have so much to say, and I have nothing to say.  I want to describe what it was like to have my daughter in the hospital getting sorted out, and I can't.  It just hurts too much.  Plus there's her privacy.

I want to tell what it's been like this past week as she transitions home, not yet having all her issues resolved.  I want to purge everything about me and how I feel -- powerless, frustrated, trapped, terrified, guilty.  I want to explain how diminishing it is not to be able to tell my child to just do her homework and have her do it.

I want anyone who reads this to know that she is not her depression and her behaviors.  She is a beautiful, intelligent, funny girl who has so much to offer.  And so much to learn.  To learn to control.  To access to cope.

I had coffee this morning with another parent who has been through some similar things with her son.  What a welcome break it was, and a welcome resource!  She lent me a few books and copied out a few names and agencies.

A case manager from our insurance company called the other day.  She pulled a list of names of doctors and therapists closer than the 90.6 miles it takes to get to Children's.  I got that today.

And just a few minutes ago, my daughter, of her own volition, sat herself down to work on her Science Fair project.

I know good and well that there is an overwhelming amount of work ahead of us.  I know that at any second, peace may be shattered.  But for this one moment, right now, it's quiet.  I think I'll hit "Publish."

Thursday, September 22, 2011

Chemistry

Chemistry is a funny thing. 
Johnny was a chemist's son,
But Johnny is no more.
What Johnny thought was H2O
was H2SO4
OK, not that kind of funny!

If I had it to do over again, maybe I wouldn't study linguistics and get my TESOL certificate.  Maybe I'd study the chemistry of the brain.  Maybe I could research what happens in the brain when a person experiences the symptoms of anxiety or depression.  Maybe I could apply that research to finding a solution -- symptom relief, brain chemistry balance, a vaccine.  Maybe I'd be in a better position to help my child.  Maybe I'd be in a better position to help my family.

I don't have it to do over again, so I'm taking a class through the local NAMI chapter.  The first peer-taught class met last night.  It was the introduction class, so of course it didn't get to the meat of the curriculum, but it was very useful.  A couple of points that struck me are, in fact, points that I've recognized for years about my son and Asperger's but hadn't connected to my daughter and anxiety/depression.  (You have to remember that I am the adult child of a parent with considerable mental health issues and therefore bring some unresolved baggage to the table.)

One point is that mental health issues need to be reframed as brain disorders.  They are as physical as diabetes, hearing loss, or heart failure.  Just as Asperger's is a neurological disorder, depression is a biochemical brain disorder and not willful defiance/noncompliance.

Another point is that this is not the child's fault.  Just as you wouldn't blame the child with diabetes for having a nonfunctioning pancreas or the child who is blind for not being able to see, we can't blame the child with Asperger's for having a lack of connections in the brain or the child with depression for having a chemical imbalance in the brain.  It's not her fault.

And a third point is that families of children with these brain disorders are often in catastrophe mode.  I've said before that some disabilities seem to be like hurricanes:  You can see them coming from off the coast of Africa, can track them across the Atlantic, can see their strength and where they will make landfall, and can get out of Dodge if necessary.  But having a child with an Autism Spectrum Disorder has always seemed to me more like experiencing tornadoes:  They pop up with little warning and might be an F0 or the wrath of God.  The best you can do is run for cover.  I think that brain disorders might just be tornadoes, too.

I'm looking forward to the next class.  And scared to death of getting through the next few days, few hours, few minutes.

Saturday, September 17, 2011

Come home

My baby still isn't back from the hospital yet.  I know we're getting things worked out, but I've had enough.  I want her home.  Of course, I want a staff member to come home with us to monitor everything, too!  Sigh...

Patience and peace are my current goals.  Prayers welcomed.

Wednesday, September 14, 2011

Hanging on tight

John 14:27

Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.

1 Peter 5:7

Cast all your anxiety on him because he cares for you.

1 Peter 5:10

And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast.

I will hold on.

Monday, September 12, 2011

Food

I’m a stress eater.  Absolutely.  Always have been.  I understand this about myself.  Don’t admire it, but understand it.  Never understood those people who are stress non-eaters.  Accepted them, but never understood them.

Apparently I’m an ultra-stress non-eater, if you can imagine such a thing.  Looking at food, smelling food are tolerable, but actually doing more than picking it up and putting it back down again with maybe a nibble at most is beyond me in such situations.

I didn’t know this about myself until this past weekend when I brought my daughter up to be admitted into Children’s.  Needing to make the decision.  Making the decision.  Getting to a downtown building I haven’t been to in over a decade, in the dark.  Coming through the ER on a Saturday night.  Spending hours there just to get her a bed at 2 a.m.  Sleeping in the car in the parking lot because I was too -- tired? distraught? overwhelmed? -- to contemplate finding a hotel much less getting there.  Waiting for visiting hours.  Not yielding to her pleas to come home.  Being in the unknown for every aspect of her treatment and my daily living activities.  Arranging for school work to make it through.  Talking to doctors via email, on the phone.  Waiting.

Getting to a calm enough place to run an errand and get some lunch only to find my battery was dead and alternator running too low.  Getting towed.  Waiting for repairs.  Arranging for back-up to get to my daughter during visiting hours.  Walking away from her again.

I’ve learned quite a bit about myself.  I'm not a drinker.

Sunday, September 11, 2011

Taking Issue

Who said, "That which does not kill me makes me stronger"?  I'm seriously hoping it wasn't Jesus 'cause I've never yet disagreed with anything He's said.

This idea sounds grand when you aren't being challenged (likely I've said it a time or two myself), but come testing day, it frankly stinks.  I won't be saying it anymore.

(BTW:  I looked it up.  It was Friedrich Nietzsche in Twilight of the Idols back in 1888.  Remind me not to read it.)

Saturday, September 3, 2011

A pile driver? Really?

It's funny.  Just the other day I posted that when trying to make my school system understand the needs of the 2e learner, "these things must be done delicately."  I added that I'd rather heft a mallet.  All in all, though, I don't tend to work well with mallets, and it violates my underlying philosophy that you catch more flies with honey than vinegar.  It also is way outside my comfort zone.

Almost immediately after posting that, I accepted a new Facebook friend, and the first thing that popped up was his info. page with this favorite quote:  "If you have an important point to make, don't try to be subtle or clever.  Use a pile driver.  Hit the point once.  Then come back and hit it again.  Then hit it a third time - a tremendous whack."  (Winston Churchill)  Oh, how gloriously freeing that would be!  Not to have to consider the egos or to preempt the typical poisonous responses of the people who need to have the point -- that we must meet both sets of needs, the need for rigorous input as well as the need for organizational and social skills supports -- whacked into their heads!

My comfort zone is my problem when advocating for the needs of my children.  If I stay in it, their needs don't get met.  I just don't like to behave badly.  It's wrong, and it's rude.  Despite what the good people of Wrightslaw recommend over and over, and what I truly believe myself -- that we must maintain a professional, collaborative, positive attitude -- I have not been successful using that approach.  At best, I get lip service.  Followed by a whole lot of silence.

If you've followed along this past year, you'll remember that my friend and I put a lot of effort into advocating for our 2e children.  We started out in September by speaking to the Board of Education in support of the Superintendent's Mission Statement and were surprised at the end of our three minutes with a Johnny Carson-like chat on the couch and praise for being so positive.  Lots of advocating later, in March, we discovered that the school system's response was to change the STEM application to include questionnaires that have the potential -- and let's face it, the likelihood -- of being used to screen out 2e children.

The response to our protest to that?  From what we can see, the Superintendent sent it back to the very people who were responsible for making the change in the first place and who have demonstrated from the beginning, through it all, and right to the end, that they do not understand what it means to both be gifted and to have special education needs.  It feels to me like the Superintendent handed my precious basket of eggs right back to the disguised foxes guarding the hen house.

So what do I do now?  Run off with my tail between my legs because yet again, being positive yielded not just a relatively benign nothing but instead ugly, sometimes vicious responses from the very people who are in the positions of power to support the needs of such children?  To risk an even uglier response?  I don't think so.  The children need.

Despite being so far outside my comfort zone, despite knowing that continuing means traveling even farther outside it, the question really is whether to continue the fight quietly, calmly, rationally, collaboratively or to whack that point with a pile driver -- though I like to think I could do that calmly, rationally, and collaboratively if not quietly.

My new Facebook friend's second listing in his Favorite Quotations is this, from George S. Patton:  "A good plan violently executed now is better than a perfect plan executed next week."  I don't think I could go that far -- talk about rude! -- but it's not off the table.  ; )

Tuesday, August 30, 2011

Liking this blog I found

I found a new blog today -- Laughing at Chaos -- about parenting 2e kids.  While I haven't been able to read more than a few of the most recent posts, I found myself nodding my head, yes, YES! over multiple sentences, ideas, whole passages.  Once I even caught myself giving a fist pump over this  recurring theme:  "Highly gifted is NOT the same as high achieving.  Highly gifted is how a person is wired, not what a person produces."  I owe a big "thank you" to the 2e Newsletter for the link!

I want so many people in my school system to read this blog, to begin to understand that gifted people don't have to be perfectly gifted to need the rigor of "gifted" classes or to give back to society something that is unique or valuable.  I need them all to understand that it is not OK to accept mediocrity in our children or to believe that our children are fine if they make AYP and don't make trouble.

Not to mix my metaphors/idioms/Wizard of Oz references or anything, but if I want to make a horse drink water, these things must be done delicately...

...though I'd rather heft a mallet.

Wednesday, August 24, 2011

My earthquake non-story

OK, let's just get this over with:  I was at home with my children yesterday during the earthquake.  At first I thought three things simultaneously:
  1. It's not a jet from the base because there's no jet noise and the crystals in the window aren't rattling.
  2. I'm not that old or sick!
  3. The pole light is moving, not me.
I thought, if 1-3 are true, it's an earthquake.  I called to my kids to head for the powder room, grabbed my laptop, and followed them in.  We also grabbed the remote control and started flipping through the channels in search of confirmation that it was indeed an earthquake.  Of course, I went on Facebook, too. and when we couldn't get through to my husband (at work on the base) by phone, we texted back and forth.

That was pretty much it, but I didn't go out to run the errands I had been intending to run.  I didn't want to leave my kids home alone if there were any aftershocks, and I really didn't want to leave them home alone if it had been a "fore shock" and not "the big one." 

Then my daughter and I went out to a night-before-the-first-day-of-school Girl Scout bonfire.

Now here's what really affected me from yesterday:  I turned in my final troop financial report and handed over my troop checkbook.  My troop numbers are up for grabs, and I am no longer a Girl Scout leader.  This will be a good thing.  I did, though, get a little misty today when I deleted my Girl Scout "signature" from my email.

Just so you know, we're not done with Girl Scouts.  My daughter just bridged to Cadettes and is now working on her Silver Award with her new troop.  And just to keep the excitement going, her new uniform and all the bits came in today's mail.  Cookie sales start in December...

Today was also the first day of school.  My daughter entered middle school, continuing on in the school system's STEM Program.  She had the best day today.  It was just wonderful to pick her up and hear her happy.  Whether it's the new med, being in a challenging, interesting program, or a combination of both, I don't really care.  Today, the child is happy.

My son is now in high school, also continuing in the STEM program.  Scared me spitless when he didn't get off the bus this afternoon.  We're two houses over from the stop; I searched and searched all the feet exiting the bus, and his weren't among them!  I was just saying to my daughter that he didn't get off the bus when he walked up from the opposite direction!  He had gotten off at the prior stop five houses down in the other direction!  My heart.

Anyway, he's not very forthcoming with the details, but he seems happy enough.  His homework is just about done.  And it's his 14th birthday.

Sunday, August 21, 2011

Mini update

Here's a little bit of an update.  Nothing profound.  Lots mundane.  But this blog is my siphon.

The new med my daughter started a few weeks ago is showing signs that it's working to treat her depression.  It's hard to say whether it's the med or the fact that I've been doing my level best to keep the home environment stress-free, but the doctor was able to see a difference at our last appointment -- more engaged, cracked a couple of jokes, shared some ideas, or, if you prefer, less hopeless, less tuned out, less irritable, less disinterested.  This is a really good thing.

However, much as I like the effects, a pill isn't going to fix the thought processes that underlie the behaviors.  We're in for some serious CBT work.  My daughter is the one who has to do the work of changing the thoughts to change the feelings to change the behaviors.  I would do it for her if I could, but I can't, and until she's operating on a level field, she can't do it, either.  Come on, Week 6!  Let's see the full dose do what it's supposed to do so that this beautiful child can see the joy joy in life!

Despite my best hopes for this drug and the improvement we've seen to date, we still have what I call ugly behavior in my house.  Tonight was quite the example, only this time it brought out the hopelessness my son feels that his sister will ever "get better."  She's crying and bleeding; he's distressed and bruised.  Neither can see the other one's side, and I'm left to sort out the mess because we just can't keep on like this.  

We had a reasonable family confab.  No voices were raised, no blows exchanged.  A plan was laid out.  We'll see what comes of it.

Quite the emotional roller coaster here.  And school starts in three days.

Saturday, August 13, 2011

Quotes

People post quotes on Facebook all the time.  Most of them are nice, but they don't really apply to me.

In the past couple of weeks, my sister has posted a couple that have resonated.  The first one,
Slowly I have realized that I don't have to be qualified to do what I am asked to do, that I just have to go ahead and do it, even if I don't do it as well as I think it ought to be done. This is one of the most liberating lessons of my life.   Madeleine L'Engle, Glimpses of Grace
applies to just about everything in my life -- remember that I don't have a paying job -- from parenting to making dinner to advocating for my children's educational needs.  Think about it.  If people had to pass a course to have kids, the world population would plummet.  And it's for sure that I wasn't pre-certified to parent two children with special needs.  While I "get" Asperger's Syndrome, I have made a fair number of mistakes with my son, and since I don't understand depression in children, it's safe to say that I've made more than a fair number of mistakes with my daughter.  (She still brings up and waves in my face a couple of stellar parenting moments from years ago.)  And advocating?  Proof positive that I don't do it as well as I think it ought to be done smacks me in the face every time I hear that another family is going through what we went through or when I hear the same prejudiced and ignorant ideas coming from the very people who's job it is to help my son reach his potential.  Why doesn't my school system stop behaving badly?

But I can't stop parenting my children.  (There are laws about that...)  And nobody else is going to cook dinner every night even if we hit the jackpot.  And I'm the one who cares the most about my children, so the advocacy job falls to me, too -- to me, unqualified though I am, so I just have to go ahead and do it.

The other quote, just yesterday, was this:
For you will certainly carry out God's purpose, however you act, but it makes a difference to you whether you serve like Judas or like John.  C. S. Lewis
What better motivation to do what's right, what's kind, what's for the greater good even if it means a personal sacrifice, than to be like John and not Judas.  (Really, though, given how I was brought up, the motivation to not be like Judas is greater for me than the motivation to be like John.  It's a guilt thing. =)

I don't know that either quote is snappy enough to stitch on a sampler or print on a bumper sticker, but they definitely are thought-provoking words to live by.


Monday, August 8, 2011

CACSE's Year

I've been working really hard these past three weeks on a fair number of projects for CACSE  (the Citizens' Advisory Committee for Special Education).  One of the projects was to create a brochure to explain who we are and what we do.  That's always been a tough one to explain because to be quite honest and up-front about it, though we've tried, we really haven't done much for a really long time.  Sure, we've accomplished small goals, but they haven't gotten after our main purpose, which is to advocate for the educational needs of children in our county.

We haven't had the infrastructure necessary to have a voice and to have that voice heard.  In my opinion, we also don't seem to have more than nominal support from the Department of Special Education, but it's hard to pinpoint why I feel that way.  It seems like sometimes there are out-and-out roadblocks, but at other times, it seems to be a lack of help.  To be fair, we've behaved like children to the the department's adult, looking for information and direction that rarely came, and that needs to change.

Now, though, we've established goals and have a better idea of what our purpose is.  We're working to stand on our own two feet.  And, again in my opinion, one of the best things that has set us on the path toward doing something has been the establishment of committees so that we can identify issues and assign jobs (rather than simply attend monthly meetings and do little else).  Granted, most of the jobs since the establishment of committees in April have been about building that infrastructure, but we're getting there, and I believe that we can get there this year

Which brings me back to the brochure.  We set up the main content to address what CACSE is, what members can get from it, and what members can bring to it.  (Imagine that all pretty in a tri-fold brochure, complete with the CACSE logo.)
About CACSE

According to Maryland law, each local school system must establish a special education citizens’ advisory committee. CACSE fulfills this requirement for St. Mary's County Public Schools.

Some of the functions of CACSE are:

  • to study specific issues and concerns of parents, educators, concerned citizens, and the Board of Education
  • to advise and counsel the Department of Special Education and the St. Mary’s County Board of Education about the needs of children and youth with disabilities
  • to advise and counsel on the relevancy of educational programs and related services to meet the needs of children and youth with disabilities
  • to offer suggestions for the local proposed budget
What Can CACSE Do for You? 

CACSE offers the opportunity...
  • to become more knowledgeable about local, state, and national special education issues
  • to collaborate with the Department of Special Education to improve the education of children with special needs
  • to hear the monthly Director's Report about developments and changes within the Department of Special Education
  • to influence decisions and policy
  • to meet other parents, educators, and service providers with similar goals
CACSE offers local workshops on special education topics.

CACSE can provide funding for members to attend conferences.

CACSE Needs You

CACSE needs your experiences, perspectives, insights, and ideas.

  • Come to a monthly meeting and see what CACSE is all about.
  • Volunteer to be the CACSE representative (or alternate) for your school or agency.
Representatives are voting members of CACSE and agree:
  • to attend monthly CACSE meetings
  • to report relevant meeting information to their agency or school (to principals or SIT teams, for example)
  • to focus on group needs rather than personal issues
CACSE meetings are open to the public. You do not have to be a school or agency representative to attend.
I actually started this post to gripe.  My particular committee is overburdened and understaffed, and I'm really tired.  Reports were due in today, and my committee (three people total, but summer vacations and other life happenings kicking in) had to do the brochure but also had to research and recommend promotional, educational, and recruitment items for purchase, update parts of the website, create an accurate, up-to-date distribution list, set up a poll for members, initiate steps towards holding a workshop on Extended School Year services, and investigate and determine the correct procedure for reaching the Board of Education.  All in three weeks.  Now, before you say, "At least you have a job," remember that this is a volunteer committee,  we're all parents of children with special needs, and those children are home for the summer.

I started this post to gripe, but in laying out the brochure and listing what we accomplished, I got jazzed.  This is CACSE's year.

Monday, August 1, 2011

Ryan Baumann

I'm reposting this in honor of Ryan Baumann and with prayers for the comfort of his family, my neighbors.  Thank you for your sacrifice.

Patrolling the hills of Afghanistan

All spiffed up

From the Arlington National Cemetery Website:

Sergeant Ryan P. Baumann, 24, of Great Mills, Maryland, died August 1, 2008, on Route Alaska, Afghanistan, of wounds sustained when his vehicle encountered an improvised explosive device. He was assigned to the 4th Battalion, 320th Field Artillery Regiment, 4th Brigade Combat Team, 101st Airborne Division (Air Assault), Fort Campbell, Kentucky.


Ryan's family

Ryan Baumann
made a difference in this world.


Saturday, July 30, 2011

Cheers!

I just put together my new desk chair, so it's probably a good idea to test it out, see if I'm all fully adjusted, so to speak.

We've been having a pretty nasty ride here.  My daughter's depression has taken root to such a degree that all the people on her team are now working together so that she can access the help we have available for her.  And now that we've confirmed that we're in a cycle, I'm finding it easier to tap into my well of patience.  Not easy, just easier.

When my son was younger and his behavior issues were in the forefront, I always knew that what was happening was neurological, and it wasn't personal.  I could hold onto my patience, even when he was being "disrespectful," because I knew that he couldn't accord respect much less disrespect.  How his brain works is different, and I had to find the way to reach him in order to teach him.  While I'll always regret how long it took, getting him the right academic rigor was the most beneficial school change we ever achieved.  Now most of those behaviors are things of the past.  (To my knowledge, no one has yet found the treatment for being a teenager, so we're just living through that part.)

With my daughter, we've struggled for years to identify the issues.  We know we've found some, but identifying the depression, and now, I hope, treating it more overtly, has helped me to stay calm when faced with behavior issues that feel like we're raising a brat.  Until we even out the chemicals, it's not under her control.  And while I worry about the learned behaviors she may be acquiring as we're "on hold" right now, my main job is to bring down the stress in our house and increase the positives.  Once we've got more of a balance (in the brain and in the home), we can go after the other issues.

It's become a bit of a joke in popular culture, but I'm here to support "better living through chemistry" -- it's the only thing that's keeping my hope afloat.  So here's to two to six weeks of waiting for the new meds to take effect, to more charting and logging than I care to contemplate, and to the comfort of my new chair -- CHEERS!

Saturday, July 23, 2011

August 24th

Found on the family computer: A document written by my son containing a list of historical world events that happened on his birthday.
AUGUST 24

79 – ERUPTION OF VESUVIUS. 15000 DEAD.
410 – FALL OF ROME. RISE OF THE DARK AGES.
1349 – PLAGUE BLAMED ON JEWS. 6000 DEAD.
1572 – MASSACRE ORDERED BY KING OF ENGLAND. THOUSANDS DEAD.
1814 – BURNING OF DC.
1857 – PANIC OF 1857.
1893 – COAST OF GA AND SC DESTROYED BY TORNADO. 1000 DEAD.
1921 – PLANE CRASH. 44 DEAD.
1929 – JERUSALEM ATTACKED BY PALESTINIANS.
1940 – LONDON BOMBED.
1960 – BUS FALLS OFF BRIDGE. 60 DEAD.
1961 – EX-NAZI LEADER BECOMES SOUTH AFRICA MINISTER OF JUSTICE.
1962 – NUCLEAR TESTING.
1990 – EMBASSIES IN KUWAIT SURROUNDED BY IRAQI TROOPS.
1997 – ME.
I think we should be afraid.  Very, very afraid.

Friday, July 22, 2011

To sleep

It's midnight.  My daughter is still awake.  Bless her, though, at least this time she didn't go to bed after a screaming match or such-like.  She got into bed before 10:30 -- great for a summer bedtime and fabulous for lately -- after a nice "get ready for bed," and she's been lying there quietly ever since.  She talks a little, mostly about waiting for her letter from Hogwarts and the like, and she rolls over a fair amount, but she's been good about it.  Based on my emphasis, you can probably guess that the opposite is the new typical.

The doctor reminded me that sleep disruptions can be part of depression.  My daughter has got difficulty falling off, difficulty staying off, and difficulty getting up in the morning.  If that qualifies as "sleep disruptions," I'd say we have a winner.  Add to it that she doesn't like to be alone -- she never has -- plus her history of worrying herself into a state when she can't fall off, and I can say for sure that my sleep disruptions are certainly part of her depression!

I am so not looking forward to tomorrow.  I have to get up in a few hours to wake up my daughter in a few hours and a few minutes in order to drive 90.6 miles to Children's in the sweltering heatwave half the country is currently in (predicted heat index of 115ª).  That, of course, is assuming she ever falls asleep tonight.

I have to repeat, though, that I'm very grateful for our doctor at Children's.

12:24...


Sunday, July 17, 2011

My dear child

My dear child,

There are so many things I have wanted to do with you, so many lessons and values I have wanted to share as you've grown.  Let me say them here, in case you haven't heard me:
  • Laugh, sweetheart, every day.  Find those things in life that are silly, funny, even absurd, and laugh.  Laugh with joy.
  • Treat people well.  What you send out to others is what comes back to you.  Respect what you can without diminishing others for the parts that you don't like.
  • Find your gift.  Set your goals as high as your potential; you can reach the stars with what God has given you.
  • Even if no one is watching, do what's right because it's the right thing to do.  It's called ethics, and being ethical will take you farther in your life than any unethical decision can possibly take you.
  • Honor your obligations.  Be trustworthy.  Say no to making a promise you know you can't keep.
  • Ask for help.  You don't have to do it all on your own.
  • Love.  Love yourself.  Love others.  Love what you're doing.  Accept love.  If you lose what you love, go out and love some more.
Now, my daughter, as I watch you leave your young childhood behind you for the tween/teen middle school years, I hope you enter them knowing that you are a beautiful, smart, and funny person who has value and the potential to reach your highest goals.  Now, my son, as you enter high school,  I hope you continue on the path to greatness; you have so much to give.

I have loved you since long before you were born.  I loved the idea of you before that.  You have been a source of joy to me and the sweetest light of my life.

With love to the sun and the moon and the stars and back again,
Mom

Friday, July 15, 2011

Treading water

I don't tend to talk about the specifics of my daughter's issues on this blog -- and I'm not likely to -- but I will say that her depression is spiking again.  Because she's a kid, depression presents differently from the well-documented adult symptoms.  Irritability and an attitude of "nothing is good" are key symptoms for my daughter, as our über on-top-of-it doctor at Children's reminded me today.  I also learned that sleep disruptions are part of it, and that certainly explains the past several weeks' nighttime awakenings.

While I don't want my daughter to have depression -- it does hurt -- I'm glad to have a name for what we're dealing with.  I've been struggling a lot lately with the underlying causes of the behaviors we see on a daily basis now.  I've run the gamut from poor parenting (hence learned negative behaviors) to the effects of poor emotional regulation (true but not under her control without the explicit teaching of coping strategies).  I had forgotten about the depression (and the chemistry involved).  I don't care so much about the label except that it helps identify the best interventions.  That, and it helps me have patience.

I haven't really been holding onto my patience well lately.  (I don't think I'm ready to share Tuesday's Stellar Parenting Moment #5,632 just yet.  It wasn't pretty.)  I haven't slept well in a year, and I'm really frustrated that the. best. doctor. for. us. is located 90.6 miles away, taking a minimum of five hours out of our day to see her.  The lack of specialists is one part of "preserving the rural characteristic of the Mother County" that I'd really like to see unpreserved.  My daughter needs help, and I have to yank her up the Beltway every week to get it for her.  It's draining, but when I make monthly appointments to save on the drain, her treatment lags, and she makes little progress.

It feels like we're at sea, treading water, with no land in sight.  And we're getting awfully tired.

I don't have an ending to this post. 

Wednesday, July 6, 2011

Vacation flashback

We're on vacation.  We're at my sister's house in New Jersey for the Fourth of July.  She lives just a quick hop over the Ben Franklin Bridge from Philadelphia, so on the first day of vacation, we took a little "field trip" over the river and through the city.  Our main stop was the Eastern State Penitentiary, located a few blocks from the Art Museum:

My photo before entering Eastern Penitentiary.
Eastern State Penitentiary was once the most famous and expensive prison in the world, but stands today in ruin, a haunting world of crumbling cellblocks and empty guard towers.
Known for its grand architecture and strict discipline, this was the world’s first true “penitentiary,” a prison designed to inspire penitence, or true regret, in the hearts of convicts. (Eastern State Penitentiary home page)
The whole place is disturbing on multiple levels, from the idea of truly solitary confinement -- never seeing the faces or hearing the voices of others -- to the details of the brutality that is always associated with prisons, no matter how "humane" they are thought to be, to the smell of the decayed and decaying facility.

So many pretty features lost in the decay and the purpose.

No clue what cascaded off the walls along this corridor.  It surely wasn't there at the time prisoners were behind these walls, but it contributes to the overall feeling of ruin and hopelessness.

Sadly, the smell set off a chain reaction of uncomfortable memories of growing up in my parents' house -- not that it was a penitentiary, though the common method of discipline was guilt, but that there were parts of the house, particularly the basement, that were as vile to be in as Eastern State.  Uncared-for, musty, crumbling walls... stacks of musty, moldy papers and books with no covers... two dirty ground-level windows letting in only limited light...  the feeling after having touched anything...  Who needs those kinds of flashbacks?

Memories aside, I don't know that total solitude causes penitence...

Wednesday, June 29, 2011

What IS that?

I was driving along yesterday, minding my own business, when a quick glance in the rearview mirror showed something massive behind me.  After a stock cartoon double-take, I realized that it was my almost-14-year-old son's head, now higher than the headrest, filling half my mirror.  When did that happen?  I took down the baby mirror only last year...


Tuesday, June 28, 2011

Eight weeks down

I'm at the library right now.  I didn't think they had wifi here, but apparently, they do.  I picked out a couple of books, but I'm not sure why -- It's been a rough several days, and I don't think I'm going to get the chance to read them.  Well, maybe.

My daughter is in her second day of Fine Arts Camp.  This is a new camp for her -- she did Girl Scout Camp six years running and just didn't want to do it again this year.  I truly don't mind as it, too, is running right now, and it's just stinking hot out.  I'm sure I would have been roped in to volunteer again this year, and it's just stinking hot out.  Not to repeat myself.

The Fine Arts Camp is indoor, which is all to the good and requires no daily tick checks.  My daughter is in the Band section, again all to the good, but yesterday she told me she wanted to switch from clarinet because she's getting bored with it -- not, she said, to sound like a bratty teenager -- and pick up the trumpet.  She then told me that the teen counselors at Band Camp told one of the trumpeters yesterday to just go ahead and empty her spit valve on the floor because hey, she was sitting in the trumpet section of the high school band room, and that whole section of carpeting was full of trumpet spit anyway.  Ew.  Really.  Ew.

I got other pieces about her day out of her yesterday, but what made me feel best of all was that she didn't get into the car and tell me she hated it.  While that sounds like damning with faint praise, for my daughter, it's actually a high accolade for the camp.  That and the fact that they played dodge ball the first day made me feel reasonably good about sending her back the second day.

However, camp must not have been good enough because getting her out of bed this morning was horrible.

I might wish for a Chatty Cathy, but that's just not who she is.  I might wish for a glass-half-full kid, but ditto.  I might wish for a kid who remains calm, and that's what we're working on.  And that's why it's been a rough few days.

On to the ugly:  A year ago, I got a case of shingles.  (Yes, I did blog about it, but as it's about shingles, it's not that interesting.)  Ever had shingles??  It's nasty.  Hurts like a son of a gun, itches something fierce, is hideous to look at, and shuts down your life for several weeks.  I swear I think I'm getting it again, this time on the other eye.  There's nothing I can do about it before the rash appears, so I'm in a hold pattern, but I'll be at the doctor's door lickety-split once that rash shows up.  Anyway, though not proven, it's thought that stress and fatigue are triggers of shingles.  Stress and fatigue.  Really?  Maybe I'm surprised only that I don't potentially have it in more than the one location.

Friday, June 24, 2011

Failure for a video game

It's summer vacation in our school system -- in fact, one week of it is now behind us with 8-1/2 weeks still to go.  I feel a bit like a cross between Julie McCoy, Cruise Director, and Simon Legree.

My daughter feels she needs constant activity and entertainment to enjoy herself (and to motivate her to stay off her brother).  At 11, she's too old for "play dates," but there are few children she plays with in our neighborhood (OK, no children that she plays with in our neighborhood), so I can't just open the front door and tell her to come back home for dinner.  At 11, she's dependent on me to take her places or to pick up a friend.  I don't mind if she has a friend over -- two so far this week, with her at one's house, too -- but I can't get her to tell me the name of anyone from her class that she'd like to get together with over the summer.  It's a bit hard to set up a get-together when the pool of people is only two deep, and one of those two gets on her nerves more often than not.

She also wants family time on demand, asking for all of us to do something together regardless of schedule or interest.  And frankly, her brother just isn't interested.  He's an almost 14-year-old boy with Asperger's; playing Just Dance 2 on the Wii to a Ke$ha song simply isn't going to draw him away from Final Fantasy Gazillion.  Yet my daughter takes his disinterest as a personal insult and not as a manifestation of his disability combined with his age.  And whatever happened to the ability to entertain oneself?

My son, on the other hand, wants nothing more than to be left alone to entertain himself with video games.  He'd be quite content to stay in his boy cave in the basement and play games all day, with occasional forages in the pantry.  However, aside from the fact that there's more to life than video games -- Gasp! -- my son requires a taskmaster to complete his summer assignments.  He'll do them with only a prompt, but in his desire to get back to his current game, he is accepting mediocrity in himself.  This is not OK.  We've met too many people in his life already who are willing to accept mediocrity in him -- not only accept it, but encourage it.

My son doesn't pick up on subtle social cues; explicit teaching is typically necessary, but when he doesn't buy into the need for the skill being taught, brick walls are more accepting of the lesson than he is.  I have to find the "hook," and so far, the best I can come up with is that in order to keep that high-paying job he believes he's going to get, he will have to show his boss his best work all the time.  Promotions, retention, all will depend on his doing his job well.  Bring that closer, and the same will be true for his professors; closer still for high school.  "But Mom, who's gonna know if I use a calculator on these problems?"  "Son, ethics is doing what's right even when no one is looking.  And besides, you have to show your work."  "Aren't you supposed to be letting me fail to learn my lesson?"  "I'm not letting you fail so that you can go play a video game."

Eight-and-a-half weeks to go...

Monday, June 13, 2011

Underdone

The school budget is close to being finalized.  The Board of County Commissioners (BoCC) did not step up to the plate, giving only an additional $750,000 and causing everyone to have to swallow their bile to "thank them for the additional funds" when in point of fact, their level of funding has hurt our children.  They didn't touch their fund balance of over $12 million.  The school system's is down to a little over $2 million.  They also claim that they "don't fire teachers" and in fact have no line-item veto power, yet they scrutinize every aspect of the budget and demand that the Board of Education (BoE) justify its request for additional funding in minute detail.  They are quoted as making suggestions for what can be cut, suggestions that show little understanding of the legal constraints that govern a public school system.

The school system will furlough employees next year for three days.  My understanding was that these days would be professional development days, which may fit with what was said recently, that the days would be worked in around weekends or holidays.  Since the additional $750,000  went towards teacher salaries (un-pink-slipping 16 employees), some people seem to be satisfied with accepting the furlough days as the lesser of two evils.  While I don't disagree with that, the furlough days, if they are indeed professional development days, will remove most of my hope that staff will receive the training that is so desperately needed in this county, especially training related to autism spectrum disorders, executive functioning, social skills, and twice-exceptional students.

At the last BoE meeting (last week), one board member suggested that in upcoming talks with the BoCC, the BoE should point out the obligations and legal constraints of special education and Race to the Top in order to help the BoCC better understand the funding needs of the school system.  I hope that this happens.  I'm considering if/how to offer support from the Citizens' Advisory Committee for Special Education (CACSE) and the Autism Spectrum Support Group of Southern Maryland.  Nine of us from one, the other, or both spoke to the BoCC in April in support of increased funding for the school system.  I'm not sure what we could do... Would personal stories of the educational needs of our children help? CACSE meets next week.  Perhaps we can brainstorm on the topic.

Today was the last full day of school.  Three early dismissal days follow before my children become rising 9th and 6th graders.  My son has an all-day class trip to an amusement park tomorrow; his sister and I will be doing all the last-minute preparations for our graduation present to her -- tickets to a Katy Perry concert -- on Wednesday.  Wednesday morning is my son's promotion ceremony, which pretty much shoots the entire morning, and my daughter's promotion ceremony is Thursday morning -- ditto on shooting the morning.  I'm not liking this roller coaster week.

And today we got in the mail a bill from my son's school for $83.25 to replace his "mutilated" Spanish book.  I believe smoke was coming out of my ears.  However, he has already paid off $47 of the debt in three trips to GameStop this evening to sell back his video games.  He'll be working off the rest of it next week.  I truly do not understand the psyche of an 8th-grade boy.