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