Tuesday, August 24, 2010

13

Today was my son's 13th birthday.  It sort of got lost in other things.  He doesn't do the whole party thing -- never has.  Just not interested, and wouldn't eat a piece of cake if you paid him.  He asked for a Nintendo DSi.  Due to budgetary constraints, that's all he got (plus the free game that was bundled with it).  Due to the fact that 1) school starts the day after his birthday, and 2) I think it's just plain wrong to ask him to play with a new game system for less than a day before he has to put it away to go back to school, we gave the DSi to him a couple of weeks ago.  Today he got a game from his sister and two cards/checks from relatives.  And we took him out to CiCi's Pizza.  (He really prefers Arizona Pizza because he can get french fries there, but our Arizona Pizza  one day just wasn't there anymore.  It was a little bit Twilight Zone-ish.)

Today he also got up at 5:30 in preparation for tomorrow's 5 a.m. alarm.  His bus came at 6:30 last year (except when it didn't).  It only takes him an hour to get ready at his speed, but he likes to have time to play or read (or, truthfully, to not have us yell at him to MOVE IT), so he gives himself an extra half hour.  This is pretty amazingly self-aware and was a big change from the year before when the bus came at 6:45 and he slogged his way through the morning routine with us hovering and prompting for every little thing.

Today his (special ed.) bus driver left a message:  We're to have him ready for a 6:15 pick-up.  Yep.  6:15.  I'll give them a couple of days to get the route sorted, but if that's the pick-up time for real, you can make book that I'll be doing something about that.  (His school is only 8 miles down the road and starts at 7:05.)  Last year I attributed the change in pick-up time to the fact that there was double the number of kids on the bus in 7th grade.  Of course, I attributed that to the transportation department's attempts to save money.  But 6:15?  That's a planned route of 50 minutes, and that's unacceptable.

Today he went to his Open House.  He met all his teachers, most of whom he already knew.  He signed a couple of "contracts," and we paid most of his fees.  We found out a couple of weeks ago that the aide on his team the past two years had left; he'll have an interim aide -- though he'll have her for fewer periods than in the past as we try to fade back some of that support.  We found out last week who his new case manager is; she told me today that she read his IEP last night.  We found out yesterday that his counselor, who was supposed to be with him all three years and who was the only service provider he was interested in continuing meeting with this year,  has left.  I found out today that his science teacher may just be the saving grace of the year:  it seems that he will allow my son to have a disability and he'll help him.  I feel a cautious "Woot!" building up.  You'll hear it if this turns out to be the case.

Today he annoyed me.  Par for the course.

Today I found myself lost in the minutiae of back-to-school events, but because he is who he is, he didn't seem to mind.  He had his DSi, he had his new game, and he had his pizza.  But I minded.

Sunday, August 22, 2010

Rigor? Really?

Sorry to those of you who are my Facebook friends and have already seen this.  I'm still so appalled that I haven't been able to shake it off. 

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Nine weeks ago, my son finished 7th grade (with 4th quarter straight "A"s, I proudly add).  Nine weeks ago, my son came home with these summer assignments:

Reading

1) Read/log 3 books (title/author).
2) The Wednesday Wars
    a) Background:  Read plot summaries of these Shakespearean plays:
        • The Merchant of Venice
        • The Tempest
        • Macbeth
        • Romeo and Juliet
        • Julius Caesar
        • The Tragedy of Hamlet, Prince of Denmark
        • Much Ado About Nothing
    b) Background: Research these background topics:
        • The Vietnam War
        • The Antiwar Movement of the 1960s
        • Mickey Mantle
        • Jesse Owens
        • Bobby Kennedy
    c) Read The Wednesday Wars
    d) Write a double-entry journal
        • Identify 30 quotes (evenly spaced throughout the book)
        • Record quotes
        • Write a response for each
            - 10 personal responses
            - 10 text-to-text responses
            - 5 text-to-visual responses
            - 5 analysis-of-author’s-style responses

Geometry

1) Fly a kite.  Take a picture.
2) Observe and document 6 examples of geometric symmetry in the world:
    a) 3 Reflectional
    b) 3 Rotational
3) Complete a 4-page activity sheet while learning to use the Geometer Sketchpad software.
4) Complete 5 pages of algebra review problems, showing work.
5) Visit 6 given math websites and play the games/do the activities
    a) Coolmath.com
    b) Classzone.com
    c) StudyIsland.com
    d) Afterschool.com
    e) Funbrain.com
    f) Labyrinth.com

Science

1) For each of 16 given topics:
Phyics -- Newtonian, quantum, dimensional theories, practical engineering, energy sources
Chemistry -- medicine, aerospace materials, nanotech, alternative fuels, aerospace design
Astronomy/Cosmology -- origins of the universe, star formation, origins of the solar system, space exploration
Paleontology -- new discoveries, new theories
    a) Find a current news article
    b) Read it
    c) Log the bibliographic reference
    d) Note your responses to it
    e) List any questions you have
2) For each of the above, choose another article or information that springboards from it and do the same
3) Complete Steps 1 - 3 for the upcoming year's Science Fair
    a) Prepare the Science Fair Data Book
    b) Brainstorm ideas
    c) Define the problem


Is it just me, or do you feel that some of the above is normal "read and brush up on your math skills," some of it is busy work, and some of it is that he's to learn new information that they won't have time to teach in 8th grade?

I have spent the past four years focusing on advocating for appropriate rigor in my children's classrooms.  I have not spent the past four years advocating for busy work and learning new information at home.  That's not the purpose of homework.

I don't believe that my son has yet been taught the skills necessary to complete some of the above.  He can find and read plot summaries of Shakespearean plays on the internet, but in order to research such background topics as the Vietnam War, he needs skills to evaluate internet sources for appropriate level and content.  He also needs parameters -- just how much is enough background on these incredibly broad topics?  And oh, how he struggled to find appropriate current news articles on the given science topics.  His greatest difficulty was narrowing the overwhelming "hit" list of every search while determining which ones were current news articles.  That's a skill that needs to be taught.

My son was going to start the Science Fair project over the summer anyway because his top speed is relatively slow and he needs to get a head start whenever possible, but having to start it over the summer indicates that they won't be able to get it done otherwise.  It's my opinion that if the Science Fair event can't be completed within the program's schedule, then the schedule needs to be examined, not the children tasked with starting it over the summer.  (FYI:  Again this year, all parts of the Science Fair project are due Thanksgiving Monday.  For him to spend Thanksgiving with his family, he will have to complete all work, trials, tests, and analysis, the Abstract, the Research Paper, and the display board by the Tuesday before Thanksgiving.  If he doesn't, he and his dad will have to stay home., missing family celebrations on both sides along with his dad's birthday.  This is just plain wrong.)

I should make it very clear that I'm not against homework, and I'm not against summer assignments, though I don't particularly like either one of them.  (I did when I was a teacher, but I don't now that I'm a parent of a child with Asperger's.)  I'm against busy work and packing the schedule so full that curriculum can't be completed unless it's done at home.

So it's nine weeks later, and school starts in three days.  My son finished everything and has tidy stacks of papers waiting to be turned in the first day along with his box of tissues and rolls of tape, but I can't say that a good time was had by all.

Saturday, August 14, 2010

Down a new path?


I'm hesitant to bring this up.  I'm afraid that the breakthrough I think I'm seeing is an ephemeral anomaly that will be gone in my next heartbeat.  And that, I think, could break my heart.

My daughter is not a demonstrative person.  She jokes, she tantrums, she makes awesome connections in that remarkable brain of hers, but she doesn't hug, kiss, say, "I love you," or snuggle.  I've grown kind of used to living that way; my husband and son are so "Asperger's" -- one officially so, the other partially admittedly so -- in all aspects of their lives.  They don't think to reach out with a touch or a sweet word.  (Remember that it was my son who told me, 'round about the age of 5, that "he would love me in 2009."  It was then 2002.  *Sigh*)

I had such hopes that the little girl who was my snuggly helper as a toddler and preschooler would be the one who broke that pattern for me.  But somewhere around the age of 4, things changed.  I don't know what happened.  In some ways, it doesn't really matter.  She was tested twice and found not to be on the spectrum, but I don't know why she stopped being "my girl" and pulled away from the loving touches a mother gives her child.  I don't know why she stopped saying she loved me.  I know only that for years, I've stood alone in a houseful of people, the only one to initiate loving phrases and touches.

Last week, out of the blue, my daughter oh-so-quietly said, "I love you" and gave me an awkward squeeze.  My heart.  This she's repeated a few times since then, letting me play with her fingers or stroke her hair.  Today she let me hold her hand in the car.  My heart.  I never thought I'd see that girl again, and these glimpses have been so sweet.

I'm so afraid to hope.  I'm so afraid not to hope.

Friday, August 13, 2010

To Kindle, or Not to Kindle?

I downloaded Kindle for my computer a few weeks ago to see if I liked reading books electronically.  I've got to say that while I can only imagine what it's like to read one on an e-reader and not on a laptop, I love e-books!

I bought one book, but all the other ones I've downloaded have been free.  Amazon has limited-time offers on about 100 books, and I've found a good handful that look good to me.  Amazon also has over 16,000 free "popular classics" as well as links to sites that offer titles from the more than two million older, out-of-copyright, pre-1923 books online.  What's not to like about that?

When my sister was here a couple of weeks ago, we went out to look at other e-readers available in stores.  There's something to be said for them, but I'm an Amazon person -- my favorite place to shop on-line -- so if I get an e-reader, a Kindle is probably the best choice for me.  But do I really need one?  Probably not, but my laptop gets hot and doesn't have the same battery life as the Kindle, plus I don't have internet access on my computer unless I'm at home or in a Wi-Fi hotspot.  The Kindle I'm looking at has free 3G for the one-time cost of purchasing a higher-priced machine.


I think I'll be buying myself a Kindle.

Wednesday, August 11, 2010

Walk

Walk.  Just walk away.

Don't listen to the two of them.  It's all verbal, no physical to break up.  Her statements actually have validity, but when delivered in the manner of Chinese water torture, the message gets lost.  His responses are so quietly Asperger's, with no theory of mind, no concept of "the Golden Rule," no application of the lesson of ignoring her that he says he's learned.  Only my sanity is at stake.

Walk.  Just walk away.

Tuesday, August 10, 2010

It's Time.


(Drawing from http://heitmuller.blogspot.com/2007_01_01_archive.html)

If I can make it through today, I have only 14 more days to get through before the start of school.

Camps have finished.  Now we're doing all the doctors' appointments and back-to-school shopping, including for the "boring" stuff.  My daughter, though 10 years old, doesn't like staying home alone.  Could she possibly verbally begrudge the time spent at her brother's appointments or buying his stuff more?  ("Why should I have to go to his appointments?  It's always about himHe doesn't have to go to my appointments...  Why does he have to have a calculator?  Why do they have to unlock it from the rack?  Why don't they hurry up with the key?  This is so stupid.  I want us all to stay home.")  I know whom I'd like to stay home...

Even when home, they bicker.  Well, they bicker whenever my son emerges from the basement for breaks from playing his video games.  (He still has to print and assemble the colossal amount of summer assignments he had to do, and he still has to fly a kite -- really -- but for the most part, his school work is done.  That doesn't stop his griping at his parents when told to do anything that isn't playing or eating or petting the dogs, however.)  Most of their bickering is variations of "S/He's looking at me!" but magnified a hundredfold by her emotional dysregulation and his Asperger's.

Disclaimer:  I love my children.  I do not love my children's behavior when they are together for longer than, oh, say, five minutes.

Please note that this summer, unlike last summer, I didn't start the countdown to the start of school until there were only two weeks remaining.  Last summer, I started the countdown with the full 10 weeks remaining -- yep, from Day 1 of summer vacation last year, I was ready to send them back.  I consider my restraint this year to be major progress.  (I'm ignoring the fact that we had only nine weeks of vacation this year, so really the comparison is three weeks remaining.  Still a major achievement.)

Do you think God frowns upon prayer requests for sanity and/or the quick passage of time until the start of school?

Thursday, August 5, 2010

On the menu: Joy Luck Soup, part 2

I wrote a little while ago that I found this cool website called Autism Sucks, where people who parent people with Autism Spectrum Disorders can "let it out" without having to be politically correct about how bad it can sometimes be.  As they say there, "Autism sucks, but our kids never do."

Well, I've got a new problem:  I now have to face the co-planning of my mother's 75th birthday party (as mentioned here).  My sister and I are taking it on, with some input from our brother.  I live four hours away.  They live closer but still plus/minus an hour away, with some heavy traffic spots along the way.

What I don't mention often is that there are a lot of mental health issues involved with my parental unit, major issues that have been around for more than six decades.  It's not appropriate for me to discuss them here.  Suffice it to say that planning a party for her is fraught with pitfalls that cover all aspects:  
  • Dates -- The actual birthday is New Year's Eve, which is obviously not an option.  We asked her to give us dates around then.  She wants a Saturday in October because, "It might snow in December," and "November is still hurricane season."  (So is October, but apparently that doesn't fit her thought processes.)
  • Guests -- We requested the invitation list, now a revised invitation list, of family and close friends she would like to have celebrate her day with her.  (Bear in mind that she has only about 15 - 20 relatives, including us, still living.)  The first list, at 82 people, was immediately followed by a list of 113.  That's a small wedding reception, larger than the one my sister held a few months ago when her daughter got married!  We just can't budget it.  We might just be able to make a list of 50.
  • Party Type -- The truth of the matter is that my mother wants an "I-want-to-thank-everyone-who-has-been-nice-to-me" party for her church "family."  (There's a lot more to that, but that's the nutshell version.)  We can throw her only a birthday party.
  • Location -- She wants it at her church hall.  We can't do that.  Family from out of town cannot come into a church and take it over to host a party for one of its members.  Aside from that, there are layers of why we aren't comfortable holding it there.  That leaves locations such as her community center ($250 with a $400 deposit, so already ruled out), restaurants, fire halls... with constraints of our availability to set up and break down.
  • Food -- She says she wants only coffee, cake, and ice cream (related to her wanting it at her church hall).  How do you, long distance, set up coffee and ice cream for 113 people?  How do you serve cake and ice cream to people from several states away and send them on their way again?  And what do you do for the other 90 minutes of the party?
  • Presents -- My mother was adamant that she wanted no presents at this party.  If a guest felt so inclined, s/he could give to one of her church's missionary funds in her name.  As of today, she wants presents.  Why?  Apparently, someone told her that people will be upset if they aren't allowed to give presents.  (What do you want to bet that someone earlier had told her that people would be upset if they had to give presents?)  Her response to my question of whether she wanted presents or not was, "I just want everyone to be happy."
So after I told her "no" to 113 people, she immediately called her friends and told them that they can't come.  (We don't even have a date, a location, or a guest list yet.)  Argh....

I know that these things sound paltry, but I'm asking you please not to poo-poo them; when you overlay the above with the issues that skew reality, they become major stumbling blocks.  I can't describe to you the intensity, the stress that surround even the most mundane of interactions with a person with such mental health issues.  I can't explain how difficult it is when expectations are skewed and hidden.  I can't make clear to you how anything we say or do is misinterpreted, with those misinterpretations spread to all and sundry as fact.  I can't express the frustration at knowing that no matter how nice, how mentally healthy, we make this party, it will never satisfy her.

I'm not sure that if I publish this post, I won't delete it later because of the sensitivity of the topic and how few people understand the impact of mental illness on the family.  I don't want to be viewed as a whiner, nor do I want to be told that I should be happy that I still have my mother, that she's turning 75, that she has so many friends...   I'm going to suck it up and do the best I can to make this a positive experience, but I need a release valve.  I need an equivalent "Mental health issues suck, but our parents never do" outlet.

Tuesday, August 3, 2010

Give Camp 2011 Gears Up


In March 2010, I represented the Autism Spectrum Support Group of Southern Maryland at the first ever Southern Maryland Give Camp.  (I blogged about it a few times in March and April.)

It's time now to start planning for the Southern Maryland Give Camp 2011.  This year, I get to be involved not as the representative of a charity (or two or three!) but as a volunteer on the planning committee.  I get to help decide which applications from non-profit organizations to accept.  This is just too cool -- to help out the great people at SoMD Give Camp (You know who you are!!) after they helped the Autism Spectrum Support Group of SoMD, the Citizens' Advisory Committee for Special Education, the Learning Disabilities Association of St. Mary's County, and 16 other non-profit organizations last year.

So if you're an information technology (IT) kind of person, a person who likes to help out however you can, or a non-profit organization in need of IT help (websites, databases, etc.), join the SoMD Give Camp March 25-27, 2011 (yep, the WHOLE weekend).  Visit the SoMD Give Camp website to volunteer or apply.

Check out three success stories from SoMD Give Camp 2010:


The Citizens' Advisory Committee for Special Education