Seems clear to me

I'm a fairly shy person when it comes to personal topics, but I promised myself that every time I heard a person say or write "retard" or "retarded" I would call them out. I was pretty uncomfortable with the idea, but I figured I could stand a little discomfort if maybe, even occasionally, I could help someone understand the problem with using the R-word as an insult, or even as a clinical description.

This led to one very good conversation on Epiphany in Baltimore (on a post that I can't seem to locate to link to, 11/14/11 - found it here). That felt pretty good, I talked a little about people first language, ideas were exchanged. Win-win.

Then there was a Facebook post. I really don't think the poster got what I was saying, but he apologized and so that wasn't too bad.

At work though, it's a different story. It's the same people, over and over again, who absolutely don't get what I'm saying. So here's my pitch, you can tell me if it's obscure to you.

This word is too loaded to be used any more. When it is used as an insult against people who are not intellectually disabled, you are implying that people with intellectual disabilities are valueless, the ever accessible butt of any put-down. If you use it as a clinical term, it has way too much baggage from usage as an insult. It's a general label that's sweeping and hurtful, and really, in the end, doesn't help you understand an individual any better. Use a sentence and actually describe the challenges a person is dealing with. Try to be compassionate, while you're at it. Finally the biggest reason to stop using the word is that the people that you are labeling don't want you to call them by the R-word any more.

Here are the comments I've gotten which let me know my ideas aren't coming across:
"Oh, so you're saying I'm insulting retarded people when I call X a retard. Ha, ha, ha!"
"It's the term that I learned to use for lower IQ's and I mean it clinically, not as an insult. Why should I change?"
"Oh, that's right, your kid's autistic...sorry"

I won't stop calling people out when I hear the term, but honestly, I don't think I'm doing much more than making them think I don't have a sense of humor.

Please check out my fellow Bmore Ed NaBloPoMo Crew:
Epiphany in Baltimore
BmoreSchools
Maryland Math Madness
and The Smallest Twine

And the next step is...

Money, it's a drag...

So, I enrolled my High School Senior (HSS) in an online course about college applications. It's through JHU's Center for Talented Youth and is given by Options for College. You can find more info and a course description here. Given the cost of a college education and how clueless I was about the process, $750 seemed like a good investment. Maybe I worry too much (yes, that is an intentionally sarcastic understatement).

Anyway, HSS has been "attending" these classes, getting feedback on her college choices and essays and generally both of us are a little less worried about these applications that are going in now.

Tonight is the last class, titled "Need-Based Financial Aid" and this one is for students and parents. I got a large binder in the mail already, but honestly, I haven't really looked at it too much. Money, financial bargaining and budgets make me uncomfortable and vaguely nauseous. I'm proud to say that I don't have MS Project on my PC.

Anyway, I purposely told HSS that I wanted her to pick colleges for application without regard of cost because I had no idea what sort of aid package we would get. "We'll cross that bridge when we get to it," I said. I guess we're just about there.

I'll keep you posted with my take from tonight's class. If nothing else, I should get a blog post out of my hour and a half on line tonight.

Autistics Speaking Day

So, yesterday (11/01) was "Autistics Speaking Day". You can read more here and here. The basic theme, to my mind, is to reinforce the idea that the autistic community, especially autistic adults, should be the first party to talk when the topic is autism support and autism research.

I respect that idea and I value this expression. On the other hand, msk is just not at a point where he can speak up for himself. I don't think I'm underestimating him, it's just that questions and speech and listening to people talk, especially about him are not his strong points. In fact, I'd say they irk him to the point of pain.

On the other hand, I have a video from a few years ago of a composition that he made up and let me video. It's all about numbers and chord progressions.

I'll see if some time this month I can get msk to type an entry and let me load it onto this blog. Or at least a newer video where you can hear that his voice has changed.

A different halloween

I thought that this was maybe the year to end trick-or-treating. I mentioned nothing about Halloween and did no last minute shopping for costume stuff. I bought candy for the house and msk and b-d had bought a pumpkin as part of his doing things out and about therapy. Minimal Halloween effort.

During my usual "I'm about to head home, anything I need to pick up" end of day call I asked child #2 if there were any plans for the night. They all decided they wanted to go trick or treating. I told them they had to get it together all on their own and I would get home as quick as I could, but that was the extent of my effort in the project.

We traipsed through the neighborhood from 6:15 to 7:30. I let my elder kids help msk at the doors and resolutely stayed on the sidewalk waiting. I occasionally called for msk to keep moving when it looked like he was getting stuck, but that's all I did.

I'm sure we made a strange crew for anyone who paid attention. A group made up of (almost) 13, 15 and 17 year old kids generally doesn't have a parent in tow. Almost teen boys may be rude, but they generally get the whole social clue thing of Halloween better. He and his sisters dealt with all sorts of tricky situations including:

• do you take candy or wait for it to be dropped in your bag? - different at every house
• when you recognize someone from school do you greet them with a hi or a hug?
• when people who don't know you ask complicated questions that you can't answer what should you do?
• when doors are opened, but no one comes out, should you go in?

As recently as last year I was making a point of going to doors with msk and prompting him for appropriate speech. Lots of "What do you need to say?" and "Don't forget to say thank..." My point was more to inform people who were coming to the door that there was a reason that he was acting differently than some vague hope that a once a year practice of these bizarre skills was going to make him become the typical trick or treater.

This year he seemed big and functional enough that that kind of talking from his mom would be insulting. His sisters could do whatever they wanted to to explain atypical behavior. People could shake their heads and think he was a rude boy. There are plenty of rude teen boys, so really, who cares?

I believe this was the least stressful Halloween for me since msk's preliminary autism suspicions, nine years ago.

I have spent eight years trying to mould his behavior, framing the night as therapy. "He needs to learn to talk to strangers." "He needs to learn that social rules can be changed on special days." "I need to make autism more visible and understood." For one year at least, I have given up on all those goals and just walked around the neighborhood with my three kids. Next year there will only be two of them, so this year is probably the last time.

For the record, the world didn't come to an end and there is now, as is always the case the day after Halloween, way too much candy in my house.

Sometimes you just need to let go and relax.


This is my first post of NaBloPoMo. Please check out my fellow Baltimore Ed NaBloPoMo partners at their blogs:

• Maryland Math Madness
• The Smallest Twine
• Epiphany in Baltimore
• Bmore Schools

Doin' the happy dance!

OK, submit was pressed and $65 paid. That means the first application is done. Yay!

Only seven (or there abouts) more to go...yay?

Deadline #1 looms

I should probably hold back on daily post until the start of November, but I'm feeling engaged and this post will be stale by November.

The first college application deadline is November 1st. This isn't an optional application deadline, like early action or early decision. This one is mandatory and pretty prime for HSS (High School Senior).

For the last 12-13 years I've been socking away money every month into the Maryland Pre-Paid College Fund. I'll talk a bit about that in a future post, but for this post the important thing to keep in mind is that financially, a University of Maryland School System college choice is very attractive. For HSS two schools from this system have made her list - University of Maryland at College Park (the system's biggest university) and University of Maryland Baltimore County (UMBC). These both rank pretty high for undergraduate engineering programs in the US News list (#24 & #95), so they are pretty attractive that way as well.

November 1st is their "priority deadline". That makes it sound like a deadline for over-achievers. It is, in fact the only deadline if you want to be considered for scholarships or special programs. Doesn't everyone want to be considered for scholarships and special programs? I know everyone won't receive them, but don't you at least want to ask? Honestly, why do they have any other deadline than November 1st?

I felt like we were moving along OK, but then I got an email titled "A Message to TERParents". Ack! Four days before the deadline and they're pinging me about the application? Maybe this is helpful for some people, but for me it's just another source of stress and a list of things that I probably should have done a month ago if I was a more organized or generally, just a better parent.

So here we are - essays to polish, and I guess I should proof-read everything that she's typed in to these online applications (College Park has their "roll your own" system, while UMBC uses the Common App). I've made sure they’ve gotten SAT and AP scores and HSS has told me the recommendations and transcripts have been submitted via the high school's on-line system. I guess I should double check that too. And stress a little more. And worry that I've forgotten something… or she has… or her school has...


I am now officially losing my mind; and this is just the first deadline of this whole stinking process.

NaBloPoMo?

trying to blog

So the month of November is looking to be especially busy - college applications, Girl Scout cookies, Thanksgiving, House of Ruth Adopt a Family drive at work... I'd have to be crazy to to add anything to that mix... so why not commit to posting once a day, every day?

National Blog Posting Month is a Blogher thing, as far as I can tell. You can look here for info and here for FAQs. Spur of the moment, hopefully along with four fellow Baltimore Education Bloggers (1, 2, 3 and 4), I'm going to post every day.

I'm also making a commitment to check out my NaBloPoMo buddies and comment and link to their posts.

I'm not promising long posts, but I will post. In reality, the chaos of the month should make it easier to post...how college essays are adding stress to my marriage, 504 meetings, cleaning up the house for Thanksgiving with the extended family, beginning of the Special Hockey season. I could probably come up with 30 topics right now.

OK, I'm feeling psyched and confident - NaBloPoMo, here I come.

When sick is fine

Yesterday msk came down with some sort of minor bug. Nothing too much, just some sniffles and a desire to lay down. Also, not eating as much, which is pretty noticeable when a certain almost 13 year old typically eats constantly on weekends.

Not too long ago, being a little sick would have meant anger and frustration and me really not getting what was going on until a touch told me he had a fever and it would all snap in place. Yesterday was different though. Our weekly grocery trip went fine with no temper at the long line. When we got home the hub said "I think he's coming down with something." Msk was lying on the couch and not devouring the croissants that we bought at the Safeway. When I asked him how he felt he responded thoughtfully (as opposed to a rote "fine") "I feel sick."

I'm sure this sounds like nothing to most people, but the idea that msk could express how he feels, without suggestions or guesses, made me want to weep with joy. Watching your kids get sick is hard to take, but the fact that msk could never tell us how he felt, never say if the medicine was working... it broke my heart. I really wondered if he would ever be able take care of himself if he couldn't access abstract physical sensations and verbalize them to others. Rightly or wrongly, it seemed like a life-threatening deficit to me.

And then - in a single incident - *poof*, deficit gone. Through the day we talked about "laying down since you feel sick", "taking a pill (ibuprofen) to help you feel better", "maybe missing school if you still feel sick tomorrow." I know that all of this is pretty standard, but it felt like a miracle to me. No mystery or melt-downs.

There were still some issues. I'm not to sure if there was any origin of feeling sick, like a sore throat or stomach-ache. There was no putting off homework since school the next day was in question. Msk remains firmly attached to routine and there's no way he was going to bed without finishing his homework. As an aside, those homework passes because you’re doing well in a class? For a kid who is stuck on routine and loves the fact that he does well in math? They're never going to get used. A sticker or a high-5 would feel more like positive reinforcement.

Anyway... Bed time came a little early after a day of reduced eating (but not fasting) and mainly laying around. This morning he was sure he was OK to go to school and his appetite seemed to confirm that. Both of us are doing pretty well today.

Another change on the horizon

Going away to college is huge, but there’s another transition coming up in our household. It’s hard to guess how big it will be. Msk is going to be finishing middle school in a year and a half. After that comes high school. With a kid with significant challenges, high school is a big deal. College seems hard to imagine, so high school might be the end of the school phase of his life. Or not… who knows?

Questions need to be asked, and they are hard as hell for me to write down, much less answer:

• What goals are we shooting for – academically and in terms of life-skills?
• How long do we want school to last and what comes next?
• What kind of supports will come when high school is finished and what types will end?
• What school will best build on his strengths and help him cope with his weaknesses?
• After working hard to find an inclusive setting are we going to need to find a separate autism specific program?

A year and a half seems like a long time, but I know it isn't. There's lots of work to be done - assesments, school visits, team meetings, internet research...

It's intimidating to think about this process, how to start and what path to follow. Nothing to be done, but get down to it, I suppose. As the King from Alice in Wonderland says, "Begin at the beginning and go on till you come to the end: then stop."

The short list

I find myself obsessed with this college search for this kid who is suddenly 17 years old. I started the savings plan about 14 years ago, so maybe it's natural to be a little eager to see this plan realized.

So, with engineering as the planned major and within a half-day's drive as a location we come down to this list:

University of Maryland College Park
University of Maryland Baltimore County
Johns Hopkins
Drexel
Carnegie Mellon
Lehigh
Bucknell
Rochester Institute of Technology
Rensselaer
Swarthmore
Stevens Institute of Technology

The balance between being excited and overwhelmed is tough to reach - both for me and my daughter.