Monday, May 31, 2010

Memorial Day Weekend

Memorial Day is meant to be a time to remember and honor the men and women of the military of the the United States of America who gave their lives in service for their country.

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 was my neighbor.  He graduated from Great Mills High School in 2003.  I'm sorry to say that I didn't know him more than to wave to him and to chitchat with his parents at the mailbox or at neighborhood functions.  (Remember that my son's Asperger's emerged in 2000; much of the next several years is a blur of doctor's appointments and education plans.  I knew very little of what was happening in the neighborhood or in the country for a good long time.)  Ryan died 22 months ago.  Though I still know his parents only well enough to chitchat with at the mailbox,  I won't forget Ryan or his service.

There are so many who have served, so many who have died.  I thank each and every one of them for their service to our country, and I thank their families.

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Memorial Day Weekend has become something other than the above.  It's the mark of the beginning of the summer season, and for some, the beginning of the fashion season of wearing white with impunity.

Regarding the former, it really is the mark for me that my daytime freedom is coming to an end with the fast-approaching last day of school, and I need to schedule any number of appointments and get my house in order before that day arrives.  When my children are home from school, my workload quadruples, as does my stress level.

Regarding the latter, I just don't care.


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When I was little, my parents got a new load of sand for the sandbox on my birthday, which is at the end of May, and we usually had some kind of picnic cookout, whether at home or at my grandparents' house.  It took me quite a number of years to realize that my birthday was not a national holiday nor the reason we had a day off school.

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This year, my kick-off events on Friday were to say goodbye to my husband as he left for his 30th+1 High School Reunion in Pennsylvania,  to juggle the picking up of my children from their schools after some schedule changes and a field trip, and to get my son to his dentist appointment, which I scheduled for my husband's CWS Friday and not for his 30th+1 High School Reunion in Pennsylvania Friday.  Fast food for dinner, a tick check (seven ticks) and a shower for my daughter, a little play time, and early to bed.

Saturday yielded a trip to Petco and Target and the after-dinner viewing of The Tooth Fairy.  Not so early to bed, but not bad.  My husband got home a little before midnight.

Sunday came.  My daughter asked to have a friend over, and since it was quite hot, I set up the sprinkler, and later the slip 'n' slide, for them.  Sunday also brought the final event of the AWANA year: a picnic for the leaders and their families at the home of the AWANA director.  My daughter and I went.  It was nice to be with AWANA people outside of a meeting night -- way less AWANA stress for me since I didn't have to take attendance, log verses, or figure out AWANA Shares!  It was a social gathering, though, and for two people who have social issues, it had its own set of challenges, but I think my daughter and I did OK.

Monday was a quiet day.  I thought a lot about those service men and women who gave their lives for their country, my country.

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And somewhere in there, I got a mosquito bite on my eyelid and a rosacea breakout.  I'm puffy and itchy and splotchy.  I'm typing this post with one eye closed as blinking makes the skeeter bite itch even worse, and I'm twitching to scratch and rub and generally irritate further that which is already irritated quite nicely, thank you.

With absolutely no disrespect intended, I'm thankful to be itchy in the United States of America.

Wednesday, May 26, 2010

'Tis the (IEP) Season...

I really and truly dislike IEP season.  I would rather visit the dentist and the GYN at the same time than work on my son's IEP and attend the meeting(s).  We started the IEP process in August 2000.  We've got 9-1/2 years under our belts.  Most of them haven't been pretty.  Most of them haven't been successful.

This year included my son's three-year re-evaluation in the IEP process.  Bless his heart, he took it seriously and did a good job during the testing.  His scores, as usual, show so many strengths and some significant areas of impact.  And as usual, his strengths mask the need for intervening with his weaknesses.

I said to the team at one of the re-eval meetings last month that the purpose of special education is to help make him an independent, productive member of the community.  I'm not so worried about his academic needs; he has them, but academics are the strength that will pull him through.  What concerns me is that he needs to be able to get a job and keep it, to get a girlfriend/wife and keep her, to make friends and keep them.  All of the things my son has done this past year that really irritate members of his school team are things that are going to get him fired one day.  He needs social skills and executive functioning skills -- two areas that are very difficult to teach and for which school staff are only nominally trained.

This year, I received my son's draft IEP well in advance of the Annual Review.  (Since I'm commenting on that, you can figure out that this has not always been the case.  In fact, this is a rarity that I can only hope signals a new  norm.  Even the new law requiring that parents receive the draft at least five days prior to the meeting (effective 7/1/10) works only if most of the parental input has already been given.)  The case manager highlighted the changes she made before she gave me the draft, and no one else had gone in and made changes without discussing them with me or notifying me in any way.  (Again, since I'm commenting on that, you can figure out that this has not always been the case....)

I've had a follow-up meeting with the case manager -- very collegial -- and have another one scheduled for later this week.  I spoke with the OT today, and will speak with the SLP later this week.  I will need to review the document from start to finish one last time after those meetings to ensure that no last-minute changes have appeared.  (Repeat:  Since I'm commenting on that, you can figure out that this has not always been the case....)  However, all in all, this has been the quietest pre-annual review I've ever experienced.  And that's a good thing.

Saturday, May 22, 2010

Commit me

 Citizen's Advisory Committee for Special Education

I have been a school representative on our local Citizens' Advisory Committee for Special Education for the past five years.  For the last three of them, I was (Co-)Vice Chairperson.  I said yes because nobody else would.  In fact, I was on the Beltway coming back from Children's Hospital while elections were taking place three years ago.  When I answered my cell phone, the Chairperson asked if I'd do it, the members voted, and Bob's your uncle, I was Vice Chairperson.

We worked on several tasks those three years, and I'm glad we did.  But, oh, the jobs were slow.  Painfully slow.  Achingly slow.  For one reason or another, task force meetings got postponed, or necessary information wasn't obtainable, and the jobs just stretched out.  When those few jobs took such a long time, it was hard to focus on new, necessary tasks.  I know I felt some frustration that we couldn't move things along a bit.

At last year's elections, I said that I would prefer not to continue as Vice Chairperson for the upcoming year, but if a new Vice Chairperson would feel more comfortable transitioning in as a Co-Vice Chairperson, I would stay on in that role and withdraw at the close of the year; and so it went.

I've been thinking a lot lately about commitment, specifically commitment to doing what I said I'd do (barring a crisis).  I heard this adage only recently (thanks to my niece's Facebook status), but it may be familiar to you:  There is a big difference between involvement and commitment. Take a ham and egg breakfast: The chicken was involved, but the pig was committed.

I don't think I ever moved past involved with CACSE.  I helped the Chairperson, ran the occasional meeting, tried to keep us on the agenda, attended almost every meeting in the past five years, and represented CACSE at various informational events.  But I don't think I really worked to further the vision of the group.  I just wasn't committed.

When elections were rolling around this year, I followed the plan and transitioned out.  I'll still be my school's representative, and I'll still attend most of the CACSE meetings, but I won't be an officer this year.  I feel so much relief, which tells me it was the right decision.

I wish all the best to the new officers of CACSE for the 2010-2011 school year.  May they further the vision of CACSE the way I never could.

Friday, May 21, 2010

Drama


Have you ever been around someone who is pretty much a drama queen/king/heir apparent?  The one who spreads gossip like wildfire?  The one who perpetuates misunderstanding, feeding off it, fueling it?  The one, perhaps, who doesn't feel validated unless/until everyone around is all het up, too?  Or the one who defines herself by how much attention you pay her?

I don't like drama.  It exhausts me.

Thursday, May 20, 2010

He's home

As I had mentioned, my 7th-grade son went on a school field trip to West Virgina for a week.  He left last Thursday morning after the bus driver packed that bus in very creative ways.  There wasn't a nook or cranny left free of stuff -- suitcases, duffel bags, sleeping bags, garbage bags, pillows, backpacks, and snacks, snacks, snacks.

He boarded the bus at about 8:15 a.m., and that's the last I heard from him until 6:15 p.m. yesterday, a week later.  Not.  One.  Word.  No text message, no phone call.  Nothing went up on the class's website.  Every time I refreshed the page, thinking that this time, surely this time, we'd have an update, I got the same frustrating words:

WOW - it's almost time to board the bus to WV - is everyone ready???  Just a few reminders: 
  • If you are bringing your child to school Thursday, come in early (by 6:45AM) or wait until after the buses clear the front parking lot (7:15AM)
  • Luggage can...
Twice during the week he was gone I cravenly contacted another parent to get any information:  Had they arrived?  (Yes, and were headed off to bed at 9:00 that first night.)  Were they all OK?  (Yes, getting ready to head out the next morning for the second half of the field trip.)  These two tidbits had to sustain me.

At this time, I'd like to take a moment to point out that the "no news is good news" philosophy practiced by almost everyone who receives a paycheck from our local school system, especially those in the Department of Special Education, is comforting only when it's not your child.

Yesterday I had to attend a fundraiser and then head over to the monthly meeting of the Autism Spectrum Support Group.  In between, I popped home and found this message on my voice mail:

My son:  [muffled] They're not home.  Umm, they're not home.
Teacher:  They're not?  Oh.

Click.  Nothing else.  A frantic check of the Caller ID time stamp told me that he had called over half an hour earlier.  But from where?  The 301 bridge back into Maryland?  The first hub drop-off point?  His destination of the second hub?  My husband was no sooner in the door after I got that message than he was out again to go to the second hub to await our son's arrival.  In that flurry of arrival and departure, I got a text message from my son:  "At place."  Cursing the air blue didn't make the message any less cryptic.

I had just enough time before the Support Group meeting to pop into the hub's parking lot.  When I got there, my husband was shoving my son's enormous duffel bag into the trunk, and my son was already in the car.  I pulled up, tapped on the glass, and mouthed for him to get out.  He mimed to me that he was already buckled.  I mouthed back that he needed to get out of that car right that minute and give his mother a hug or he was in deep doo-doos.  He got out.  And up.  And up some more.  The boy left last week looking me dead in the eye and returned an inch taller than his mother.

I sent him home with his father to have dinner and a shower and to go to bed early.  The hug, such as it was, was really all I needed.

Friday, May 14, 2010

My friend is pregnant!

My friend is pregnant!

Happy tears!  Happy dance!  Happy tears!

First wave:  HAPPINESS!
Second wave: Missing Matthew, missing Matthew's missing this.

But still, 

Happy tears!  Happy dance!  Happy tears!

Tuesday, May 11, 2010

On the menu: Joy Luck Soup


My mother called me this afternoon. She said she wanted to run something by me:  She'd like to have a combination 75th Birthday/2-years-cancer-free/Thank-you-to-the-church-folk party.

She kept using the term "open house" both before and after explaining that no, she couldn't possibly host it at her condo, she wants it at the Church Hall.  She wants it earlier than her actual birthday because, because, because.  She wants it during the day.

She wants her children and grandchildren there, though one granddaughter is excused as apparently the distance of most of the continent does indeed give her an acceptable excuse.  At least today.  (My four-hour drive one way doesn't constitute a continental divide.)  She wants it open to all church people. She wants to ask old friends.

She doesn't want presents, but if people would like to donate to the different church funds, she'd like that.

She wants finger foods. ("I don't want anything highfalutin. No macaroni and cheese.")

I asked her directly if she was asking us to do the work.  Her "Oh, no!" was followed immediately by an idea that had us -- her two daughters -- doing the work.

I don't think it's out of line for people to throw their mother a 75th birthday party.  It's pretty clear that she wants us to do it and she won't ask, even when asked to ask.

Why do I feel like I've been asked to be a dutiful daughter and cut out a piece of my flesh to make my mother's soup, a la The Joy Luck Club?

Saturday, May 8, 2010

If I'm lucky, I might get take-out

Since my dear friend's son died 5-1/2 months ago, whole new worlds of anguish have opened to my eyes.  I remember, and now regret, not supporting a mother in the Autism Spectrum Support Group several years ago when she mentioned in such an off-hand way that she had had another child, and infant son, who had passed away, she said, due to doctor error.  Sorrowfully, shamefully regret.

With the openness of my friend's grieving, I've come to see how life-altering the loss of one's baby is, how all-pervasive the grief.  As Mother's Day approaches this year, my head pounds, my heart aches for the women who are mothers but whose arms do not hold their precious children, whether they hold other children or not.  The tears fall as I watch my friend's memorial to her son.

I think of my own mother whose daughter, my sister, passed away after only two short days.  My mother doesn't talk about it much, though she'll answer questions.  It's been 43 years.  What does she feel?  Is it still the wrenching grief I see in my friend, hear about in others' comments to her?

I know what my friend and these women are missing as my own children are here with me every day.  I hear my friend's pleas to hold our children a little closer, to be more patient, to recognize what we have, to remember what she doesn't.

Yet there is part of me that just doesn't feel what other mothers seem to feel on and about Mother's Day.  My son didn't do what other children do for their moms.  His beautiful little school-made handprint poems had no meaning.  He didn't make them; he didn't understand that he could make me happy with these projects; he didn't wish to make them for me.  The teachers and aides knew the importance of Mother's Day to a mother's heart.  He didn't.  I laminated one of the first ones and carried it with me in his IEP folder.  It reminded me to move past all the frustrations inherent in special education to work towards the day when such a gift had meaning behind it.  He was in late elementary school before the first real piece of himself appeared in a Mother's Day moment.  That was meaningful.  Now that he's in middle school, a shrug and "Whatever" may be as good as I'll get this year.

With my daughter, she may understand the connections of child to mother, but she's not a demonstrative sort.  Tender moments don't happen.  The tangible "gift" on Mother's Day seems to hold more importance to her than the role of mother.  And I can tell you that a hug and a kiss don't seem to mean as much when I have to ask for them (and may or may not get them, with or without attitude).  We none of us are portrayers of the multi-generational Hallmark moment or the Facebook pictures I'll see posted tomorrow.

Mother's Day in my house is usually a token gift to me in the morning, possibly with a handmade card from my daughter that my husband had to insist she make for me, followed by a day like any other.  If I'm lucky, I might get take-out.  I know that I can't have a Hallmark Mother's Day.  My day-to-day life is a series of crisis prevention and crisis management coupled with a micromanaged routine.  It is what it is, and it isn't what it isn't, and I tuck that piece of grief away.  For Mother's Day, I would so appreciate a vacation from crises -- prevention, management, or my own.  I would so appreciate a quiet day, a day of not having to plan menus or cook meals.  A day of not having to orchestrate activities, convince or cajole or reward anyone to do anything.  A day when everyone's needs are met, including my own.  A day of not having to set it up myself to get it.

In light of what I now know about the loss of a child, and knowing that every one of those women would give anything to have a child with special needs when the alternative is having no child at all, I feel close to awful even thinking that a grand Mother's Day present would be a vacation away from everyone.  It's not really the spirit of Mother's Day and could easily be perceived as a slap in the face to women who have lost their babies.  I don't mean it as such.  I mean it as an acknowledgment of what my life is.  And isn't.

Maybe, however unlikely it is to happen, I'll wish for all mothers everywhere a day of peace.

Friday, May 7, 2010

Angel flying too close to the ground

I went looking for something else and found this.  I never heard Willie do it, either.  It leaves me breathless.



Angel Flying Too Close to the Ground
Performed by Bob Dylan

If you had not have fallen
Then I would not have found you
Angel flying too close to the ground
And I patched up your broken wing
And hung around a while
Tried to keep your spirits up
And your fever down
I knew someday that you would fly away
For love's the greatest healer to be found
So leave me if you need to
I will still remember
Angel flying too close to the ground
Fly on, fly on past the speed of sound
I'd rather see you up
Than see you down
Leave me if you need to
I will still remember
Angel flying too close to the ground

Tuesday, May 4, 2010

West Virginia or spiders?

I've been putting it off.  Seriously putting it off.  The thought pops in, I push it out.  I don't want to think about it; I'd rather clean the spiders out of the basement than deal with it.

Tom has a field trip starting next week.  A week-long field trip.  To West Virginia.  To study the ecology and to participate in team-building activities.  General education teachers and parent chaperones.  Can you possibly understand how horribly wrong this trip is for him?  It tasks every one of his challenge areas, and it doesn't use any of his strengths to do so.  There are no inbuilt supports, and there are no support people who understand what it means to be a person with Asperger's.  (The prevailing attitude is, He has to learn how to do these things.  There seems to be little to no concept of,  Then teach him.  He's not going to learn how to do them by plopping him in the middle of a situation that requires them.  He needs to be explicitly taught the skills prior to his needing them.  I ask you again here, would you give a person who is blind a piece of print material and say, You're responsible for this information?  Of course not.  You'd either teach the person braille and provide it in that format, or you'd give him a reader; either way, you'd teach the necessary skill set or accommodate first.)

There's no nurse, there's no staff accustomed to dealing with this population, and there will be few food choices that he'll accept.  There are three- and four-hour stretches of unstructured time, several times a day for three full days and one partial day.  And while there are activities available, none of them have ever in the past appealed to him.  He's to choose from a selection of non-preferred activities, away from home, without his supports.  The boy with low tone is to participate in physical activities in front of his peers.  And he is to do so without the opportunity of having his academic and cognitive strengths help him.

He's to study the ecology of each of the places they visit, observing, noting, photographing, and sketching.  The boy with the fine motor issues is to use pencil and paper when he vastly prefers the computer.  The boy with the planning skills of a much younger person is to say, Oh, I'll stop what I'm doing now in order to complete this assignment, which I'm not interested in, and I'll do a jim-dandy job of it, too, making sure to expand on all the observations.


The entire scenario is a set-up for a multi-level meltdown.  If he melts, he's going to lose credibility with his peers, and the adults are going to think that he's disrespecting them and respond accordingly.  It is so very likely that he is going to be blamed when in fact it's the adults in his life who will have set him up to fail.  (A person who is blind doesn't choose to be blind; there is a problem with the connection of the eyes to the brain.  And it's not his fault that he's blind.  Tom doesn't choose to have Asperger's; there is a problem with the social and executive functioning connections in the brain.  And it's not his fault that he has Asperger's.)

If only we could make it so, this trip could be the perfect opportunity to work on his social skills (and positive peer relationships), skills in his IEP that rarely get addressed in the academic setting of middle school.  This could be the chance to work on executive functioning skills, modeling and teaching him how to do what needs to be done.  What better time than this for a trained professional to guide him through the maze before him, teaching him those exact skills that he's going to need in order to be an independent member of the community, to get and keep a job, to get and keep a wife and family?  But it's not going to happen this way.  None of the adults are special educators; none appear to truly "get" Asperger's.

It says in the STEM literature that "the academy recognizes the need to nurture the unique socioemotional development of highly able learners by providing an opportunity for students to learn with and from their academic peers."  NurtureUnique socioemotional development.  But only if they fit in the established framework?

Well you might ask why I'm sending him on this trip.  I'm sending him because I'm the last person in the world to say that he can't do this.  He needs the chance to show us that he can do it.  Then why the anxiety?  Because I know that this is not a level playing field for him.  Or, to switch analogies, the cards are stacked against him; this is not his game.  However you want to say it, this is not the match for him.  I've prepped him as much as I can, but I don't believe he's finished boot camp, and I'm sending him into hostile territory without a weapon.

Between the grace of God and his own smarts, I believe that Tom can get through this.  But notice that "getting through this" really isn't an optimal outcome for what's supposed to be a fun and educational "Ace Adventure."  And I'm sad to say that getting through this is expecting more.

You've heard it before...

I know, I know.  You've heard me say it before.  But really, it bears repeating:  I love Girl Scouting.  (I'd probably love Boy Scouting, too, but pack-mentality is so not my son.)

Now that Cookie Sales are over, we get to do something that I really enjoy:  Spend down our balance.  It's requiredReally.  We're not allowed to carry a large balance from year to year -- we have to spend it.  Here's the GS philosophy on the subject:  The money came from cookie sales.  If you do it "right," girls make a plan before the sale, figure out how many boxes they have to sell, do the work, and achieve their goals.  Therefore, it's for them to enjoy now.

This year, my girls had several activities they wanted to do with their cookie money; some we've already completed (World Thinking Day, Build-A-Bear, Overnight at Cove Point Lighthouse) and some still to come (donation to the Now I Lay Me Down to Sleep Foundation, Encampment, bowling, Movie Night, the zoo, end-of-year party/awards ceremony).

Encampment is going to be a big expense, not because the fees were high -- they weren't -- but because we have to feed 10 people 5 meals plus snacks.  We'll ask for some donations, but the troop will purchase the main food items.  Then there are "filler" activities to plan/purchase, and we have to take our own cleaning supplies...  Well, if you've ever been camping, you get the point.  Despite the fact that I inherited "the packing gene" from my father, the thought of loading 2 minivans with 10 bodies and everything we need for the weekend, right down to firewood, is giving me palpitations.

I've got two fabulous assistant leaders who truly pitch in and make the events successful.  We should be good for all of them.  But it's my nature to have palpitations...