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.

A New Year's Eve hike

On a rainy Sunday morning I was thinking of a post about how commitment means everyday, even when pulling the cover over your head seems like a better idea.

Then I stepped outside and I realized it wasn't raining all that hard anymore. By the time I made it to the park it had turned into an awesome hike. The stream was the highest I had ever seen. There were the winding parts with standing waves that looked like something from the Colorado River. At the straight-always the stream was smooth, but the speed, sound, and level was incredible.

Admittedly there were puddles across the path that had to be forded.

But that's why I wear butt-ugly crocs on morning walks.

On this day before starting year number 14 with Baltimore's public schools I think about how sometimes those challenges that seem like something to be endured turn out to be surprising opportunities. Opportunities for growth that those with simpler paths, or options to quit, never get to experience. I know that this year will be challenging for the two kids that are still in City Schools, but we'll hit the ground running and with enthusiasm.

The pictures above are from an afternoon walk with msk along. He was skeptical about going for a walk in the rain, but once he saw, and heard, the stream he was all smiles and enthralled. Below he's enjoying another soggy walk stim - walking through the dripping leaves and getting his hair soaking. Pure joy.

 

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The summer of our discontent is 2012

Hard, hard, hard.

Being 13 is testing boundaries and butting heads. Especially with the other male in the household.

Going away to college is figuring out how to deal with a bureaucracy on your own. Especially if you go to a fairly large state school. Having dealt with many different bureaucracies in my adulthood, I feel like screaming about what you need to do to get to the head of the line and get what you need. Not my job, at 18 the college kid needs to figure it out.

When the City School lawyer asks a a professional "Who's interests are you representing?" at an IEP how can you not shake your head? Aren't we all trying to serve the student's interest? No, I forgot, it's about making each demand for an educational setting that actually is fair and appropriate, but costs money, painful and difficult.

When yet again the ESY setting is shameful. No matter how much msk needs structure and continuity in the summer, he's not going to be left in a situation that is unsafe. So once again we have a difficult and unproductive summer.

When meeting after meetings drains my soul and my savings, and it's nothing but pure stubbornness that keeps you going...And then you remember that the School of Hard Knocks doesn't give diplomas easily and that's the school that special needs parents attend.

Quitting's not an option, so this summer will be endured. Maybe we don't survive the system, but we will survive this summer.

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I think I'm done

I've been wondering about blogging and why I blog lately. It's generally been gnawing at me this spring, but this post from a City Schools teacher-blogger (who doesn't blog about schools) brought it to a head. Really, it's bigger than blogging or not, it's about the whole basis of this blog and choices about my kids and their future in the system that gives this blog its title.

I started looking at my sidebar text and saw this declaration - "We are in public schools because we believe that justice starts with a decent free education for all and if I want decent public education being personally involved is the first step." I just don't know anymore. I truly believe that a democracy depends on all of its citizens having a decent education. Not just those with the money for a private school. Not just those who live in the right neighborhood. Not just those who can learn the same way as their peer. Not just those whose tests scores are in a narrow band around the system's average. Unfortunately, knowing that something is critical doesn't make it happen. Is that "first step" a path to somewhere or just tilting at windmills?

I am questioning decisions made years ago and decisions made more recently. I am questioning the wisdom of pouring time, energy, support, love and money into a system that I have little respect for at the moment.

I am tired of broken promises, big and small. I am tired of vindictive and soul-crushing bureaucracies. I am tired of asking overwhelmed people to do things that I know they should, but really are not capable of doing.


When I started this blog I was sure we would all survive the system and that quitting or retreat was not an option. Now, I'm not so sure.

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.

Can you stop now?

So lately, my life has been filled with these balls of stress pounding me like random hailstones.


Here's today's:

To get appropriate services or FAPE you need a decent, education specific evaluation. In msk's case, two evaluations - neuro-psych and speech-language.

Insurance won't cover education specific evaluations, and the general medical evaluations that they will cover are useless at IEP meetings

My employer has special support services for employees dealing with autism, so I thought, "What can it hurt to call and ask?" I called and asked and after talking for 45 min to give her the background story, I was pointed to some sort of fund that my medical insurance company has to help people with medical services that they don't cover. As far as I could tell I needed to prove financial need and what they wanted to cover was ABA services, which is not the same as assessment. So basically she had pointed me to a dead-end that took probably another hour of my time.

The autism "expert" called back to follow up and I (politely) told her that her recommendation had been no help. She told me the names of some support services, but it was pretty clear that after about 9 years of dealing with autism and services and schools I knew more than she did. So the answer to the "What can it hurt?" question is that it can waste my time and cause me general aggravation.

Today she called again to re-follow-up or something. She asked if I had figured out how to fund the evaluations and I said, yes, by my credit cards which thankfully allow $20K worth of debt. She repeatedly asked me if there was any more help she could provide. I wanted to ask, "More? You haven't provided any help and I wish I hadn't called in the first place." Instead, I took down her number and told her if I thought of anything I would call.

I don't need to get pissed about insurance coverage (or lack thereof) at this point. I am totally wigging out about this IEP meeting coming up next week. I worry about the money involved. I worry about making the right decisions. I worry about how much contention and friction there will be when we discuss these assessments. I worry about how much stress my husband and I can take when it comes to dealing with schools and special education. Isn't that enough without worthless people bugging me at work to ask if they can help me? Puh-LEEZE!

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:

"Lifetime" achievements

Not really a lifetime, since I got the pedometer 4/14/2012. So really 3 weeks' achievements:

245,012 steps
386 flights of stairs
112.95 miles.

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.