It's been a long time / Since I've seen your smiling face / It's been a long time

Three years in fact.

So where the gang is these days...

The eldest is just about through her bachelor's at UMBC after switching majors two or three times and landing in math. If there was any hope of another generation of engineers it was with her, but it was not to be. Well, math is part of the "STEM" acronym, so, I guess that makes it close to following in dear mom's footsteps.

Middle kid is loving life in her second year at what is probably the most unique school she could have chosen - St. John's College. I'm a little envious of going to a school that focuses on original thinking and hard work and is such a perfect fit for her.

My special guy is sporting a goatee and mustache somehow. Not so little. He's the only one who's still in the system, and even though he's a junior in high school, I think we've got another four and a half years (the year he turns 21) until we can say adios to City Schools.

Being a parent to a special needs kid in BCPSS is certainly about running a marathon and not a sprint. Marathon sounds a little too pristine though. Maybe one of those races where they slog through pits of mud and things randomly come out of the wall and punch you - like Wipeout. I think our first IEP meeting was about 12 years ago. I've got to do a quantitative analysis post some day where I count the hours and dollars and all the rest that have invested in my guy over the years. We're always in there, advocating for what is legally his due, no doubt coming across as "*That* Parent".

photo of a long path through leafless trees with a boy and dog ahead

And me? For some crazy reason, I thought it would be a good idea to finally get that master's degree that my job is willing to pay for. I've got to be twice the average age of students in the program. It's fairly exhausting between classes, homework and a job that, when you include drive time, takes up about 54hrs a week of my time. Right now, I'm one year through a five year program. I guess that means that I'll finish up my masters at the same time that my youngest is done with City Schools.

In it for the long haul...damn good thing I'm as stubborn as I am.

In which new names are assigned

This summer brought seismic shifts in our household requiring some new names.

My eldest is off to the fantastic UMBC (yes, that university that's always in the news these days for being so awesome), so the new name is fcs (fantastic college student).

My remaining high school student, who struggled mightily last year in school, had some pretty intensive diagnostic tests over the summer. The conclusion is that she's a twice exceptional student, so the new name is tek (for twice exceptional kid).

Twice exceptional, in the learning disabilities field, refers to being both gifted and learning disabled at the same time. Tek operates in the "very superior" range in areas such as verbal comprehension, perceptual reasoning and working memory. When it comes to processing speed and complex visual tasks the range is "low". In terms of percentials we've got a swing from 99.9 (in verbal comprehension of similarities), to 9 for visual reproduction from long term memory and 14 for processing speed.

I think this explains a lot. A genius kid that can't quickly perform very simple tasks. A kid who just can't remember homework written down on a busy chalkboard. A kid who gets a 4 on the AP test while barely passing the class.

The super-good news is that I think seeing these test results has let tek feel better about herself. We've had some pretty tough times with depression and self-loathing and harsh comments from teachers being taken directly to heart. This school year has seen a lot more smiles.

Last night, at back to school night, the teachers were very positive. One teacher who had taught tek two years ago, remarked on the marked changed in her outgoingness and class participation. Another teacher remarked about the quality of her critical thinking and what she added to class discussions. As much as I hate back to school nights, the rushing from class to class, the rushed pace, the lack of time to ask about my kid, last night was not too bad.

We still have a 504 meeting ahead of us, to hammer out ways to support tek and try to get the meaning of these test result across to the team of teachers, I'm feeling pretty upbeat at the moment.

How'd it go?

The illustrations from a classic that came to mind... I'm thinking the 7th circle, but I might be off a bit

After getting bumped from our original date, yesterday we finally had our IEP meeting. Sadly, we got very little done and will have to schedule another. I might not have a lot of happiness at the moment, but I've got tons of resolve and resources. Don't worry gentle readers, msk will get his FAPE.

This week

I know I owe you an actual post, but prepping for an IEP meeting that I expect to be long and hard is taking a lot out of me. Also, working on moving my mom into a retirement community and helping her get rid of stuff is also taking a lot out of me. Plus, dealing with the end of school year rushing around coupled with the concept of graduation and going to college is taking a lot out of me.

On the up side, I am sticking with my exercise commitment and I am still on the path to losing 50 lbs by the time I turn 50. Here's this week's report:

Sandwich, anyone

So in the next few months we've got some milestones:

• First kid to graduate high school/start college
• Turning 50
• A parent entering senior living

I'm pulled between kids still needing a lot of time and support, parents needing more attention and help, and a body that is starting to object to the years of neglect I've subjected it to.

A challenge, but what the heck, I love a challenge. Plus, it all ends up being more stuff to blog about.

Emotional connections

After reading this post about the emotional impact of music by one of my favorite Aut-rent bloggers, I started thinking about how msk reacts to music. When he was about 4 or 5 years old we had a music box that sounded a lot like this one from You Tube.

The Entertainer by Scott Joplin on a wind-up music box

He would wind it up and listen intently. Then he would start weeping. Initially it alarmed me, but it seemed like something he wanted to do, so I wouldn't stop him, at least not right away. As he would listen and quietly cry, the melancholy aspects of ragtime, with it's lurching syncopation, would start to get to me as well.

When I was in high school, I played in a ragtime woodwind ensemble. I loved the sense of another era that ragtime had, while still feeling very accessible and real to me. After looking a bit more on You Tube I found another Scott Joplin tune that we had played that would have probably made me cry if it weren't for the fact that I was working too hard playing it. But that emotional connection that I felt, had a great deal to do with more than ten years of really serious music lessons at that point. Msk got those connections all on his own and when he was little more than a toddler.

Solace by Scott Joplin from the soundtrack of The Sting

I do have a point with all this. I know that msk has feelings, even if he doesn't have the words to explain or share them. I also know he cares about how other people feel, even if he can't understand their verbal or non-verbal indication of those feelings. I think that his emotional connection is much stronger through music than words and that his repeated playing of a song that touched him deeply was a way to feel connected to someone outside his immediate family.

Right now we are in the midst of reviewing some pretty intense evaluations of msk's neurological and speech capabilities. The results don't contradict what I know and love about him, but they are pretty stark in showing how great his challenges are. Thinking about his connections and feelings reminds me of his capabilities, as opposed to his deficits.

Today was the day

Sometimes miracles don't really work out...

So msk had a big neuro-psych evaluation four weeks ago. Today was the day we found out (and had explained to us) the results. Think IQ and academic functioning tests from many different approaches. Think visual thinking, doing puzzles, reading, writing, following directions, remembering things, verbal, non-verbal, functioning... a complete picture by people who were used to evaluating people on the autism spectrum.

Life with msk has always felt like we were close, but not quite there. As if there was just a single key that would get clear communication, or behavior improvements, or social interaction, or whatever answer to whatever vexing problem.

• First it was just a matter of getting speech therapy to help him as a late talker.
• Then it was just getting him in a school that understood including bright kids with special needs.
• Then, if he could just be in a structured, ABA intense environment with teachers and therapists that specialized in autism.
• Then (actually several times with different tools), if he could just get an assistive communication device.
• Today, if we could just give him different ways to demonstrate what he knows and how smart he is.

So far, it's never turned out to be all that easy. I try to remind myself of that every time one of these situations come up. It doesn't work and I end up disappointed. Today, msk came across as pretty average in many ways - not intellectually disabled, not stunningly brilliant. He exhibited concentration problems to the point of adding a new diagnosis to his autism - ADD.

On the plus side all of the pieces make sense and they will help us find the right educational setting for him.

I know life would be less of a roller coaster ride if I would stop expecting an answer to just fall out of the sky. Easier said than done.

"You'll hear from us sometime in March"

Cardboard finger tapping

I am finding the wating for this month's acceptance and/or rejection letters nearly intolerable. I want to see actual financial aid packages. I want to lay all the data out. I want to figure out if I need to cash in some or part of my IRA to pay for this stuff. I want to have enough data so that I can ask HSS what she thinks about these colleges.And after the end of March there's the whole month of April to go back and forth between these colleges and make a decision.

There are lots of tough things involved in parenting. I guess making it through these two months is probably not the worst in an objective way. But more subjectively? I am not good at waiting. I can't stick big issues to the back of my mind until they can be dealt with. It would make sense, but I'm just not wired that way.

So I've got a month of stress and finger tapping and waiting. Checking the mail, getting HSS to check her email and waiting. And it means I'm also getting stressed about other things quicker and easier because I'm stressed to start with. That seems especially bad because msk's IEP and tests, tests, tests are ramping up this month. And stress is doing a number on my body as I round the corner towards the half century mark. And my aging parents = stress. And now the middle child is working on learing to drive = stress. I could go on, but listing these things = stress.

What a whiner I am. Sorry. Next post will be better.

You can’t principal-proof a school

This post from The Fordham Institute says exactly what I was trying to say in this post.

You can’t principal-proof a school: Why top down evaluation systems are doomed to fail

A school needs a great leader to rise to greatness. No amount of micro-managing on the part of parents is going to change that. If you find your kids in schools that have systemic issues you need to find a different school. That's why school choice is so important in my opinion.

Something new

What is money but a hindrance? Take it, please.

I am absolutely tired of looking at my previous post at the top of my blog, so even though this is half-baked at best, it's going up.

I was talking to another special needs parent about non-public special ed schools. When msk was in a non-public placement we never saw the bill that the school system was paying for him to attend. There were some students who's families were paying to attend, or at least the information for the school said that you could attend with your own payment (as opposed to having a school system pay). The rumor was that the price was in the $60K range - I'm emphasizing rumor and that this was more than 6 years ago, so that's a very vague number.

The discussion the other day was that $60K a year for education was just crazy. I said that you had to look at the payroll and materials before you could know that - I think msk's school had a staff to student ratio of close to 1:1 and that many of that staff had quite a lot of education and training and were probably pretty well compensated. This parent stuck with the idea that the cost was crazy and that it was only because school systems were willing to pay that much that it cost that much. He seemed to think that if individuals were paying the costs would be driven down. I'm not sure that I agree. I do know that if msk ends up getting another non-public placement, it'll probably cost quite a bit, and honestly, that's not my problem to worry about.

A similar thought comes up as we're looking at college costs for HSS. All of the schools applied to, with the exception of the two University of Maryland schools, are basically $50K/yr for 4 years. In other words $200K is the sticker price to get through college. I'm not saying I'll be handing over that amount of money - we'll be getting some amount of financial aid and hopefully some of that will be gift aid as opposed to loans. Still...$200K is a lot of money.

In another discussion with a different parent who's kid is entering college there was a question of the actual value of going to college or the differential value of going to a private college vs. going to UMBC and living at home for example. It was pretty clear that he thought anyone considering that $200K price tag was crazy. I'm not that sure. I worry about the size of University of Maryland. I worry about a "sink or swim" kind of attitude. I absolutely want HSS to live away from home when at college.

So what's the conclusion? Feels like a lot of money will be passing away from us to a lot of other people and I worry about these decisions. I hope I'm not deciding that because it's more expensive it must be better. I don't believe that and I don't want to feed into a system with costs that are spiraling out of control.

Mainly, I just worry.

No "work" today

That's right - no jacket or shoes for a January hike

So today was a catch-up day for me:

• Sleep in to 7:30 - not really a task, but I can't remember the last time I did this
• Catch up on some work tasks, telecommuting at home
• Pay bills
• Call b-d who's been sick lately and verify plans for the next time he'll work with msk
• Call summer camp manager and see if it's a good fit for msk to spend his first time away from home and family
• Call Autism Waiver service coordinator to touch base & talk about high school placement plans
• 45min hike in the park for msk to blow off steam and me and my dog to burn calories (shoes were worn except for during tree climbing)
• MVA for learner's permit test - first time since eldest did not want to learn to drive
• Possible dinner out, if hubster's in the mood
• Tickets to the BSO - taking advantage of older sibling babysitting