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.

 

Posted with Blogsy

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.

- Posted using BlogPress from my iPad

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.

The final K-12 summer

Collegiate Success Institute

This is HSS's last City Schools summer. I'm expecting/hoping that summer internships will happen through her college years, but this summer it's about prepping for college.

UMBC has a pre-college orientation-type program that includes taking two courses that are required for graduation, called CSI. So, for the first 6 weeks of the 12 weeks that is summer vacation, HSS will be living in the dorms, figuring out the logistics of college life, making friends, doing service projects, being a tourist...all sorts of fun stuff.

After that, besides the family vacation at the cabin, HSS will have to figure it out. Yet another step towards Independence and adulthood.

Summer plans continued



American Pie cty-style, from http://www.realcty.org/

 So the middle child, soon to be my only high school student also has a busy summer ahead. It's going to be her last year at CTY, where she's spent 3 weeks every summer since 2007:

I won't miss shelling out what has slowly gone from $3K to almost $4K per kid, but I know this has been a good investment for both my high schoolers. As much as I realize that msk needs to be flappy sometimes, I know my other kids need to be geeky. What other summer camps have a wiki explaining the lexicon and culture?

Also on the agenda is getting in the 60 hours of road time required to get a driver's license these days. Plus a week of camp in West Virginia repairing houses for elderly low-income folks. And there's summer reading assignments. Plus a family vacation in the woods.

I used to worry about what my kids would miss when the school system moved to year 'round. It seemed logical for it to change, expecially in a city like Baltimore where so few kids have any sort of enrichment activities over the summer. I'm holding my breath no longer. This kid has only one more high school summer left and msk does ESY and really would do better with full year schooling.

One week in

one full week of data logged

So, I'm a total geek. And I really need to lose a bunch of weight. So, using geekiness to fight fat, I bought a pedometer that has WiFi and links to a website for tracking how I'm doing. A fitbit. I love it, and so far I'm down 2.4lbs. for the week and 9lbs. from when I looked at my scale and said, "This must be wrong..."

Above is a chunk of the page showing my first week tracking steps, altitude, and everything I eat.

The journey of a thousand miles (or really 350,000 deficit calories ) starts with a week of data-logging.

Two weeks off

I was shocked when I looked at the date of my last post and I realized I hadn't posted for two weeks. Sorry.

This summer marks a first for msk. He's going to camp, a sleep-away camp for seven days at that.

League Pioneers: Experience cooking over a fire, canoeing, and camping in a tent! Since 2003, Pioneers learn and take part in activities in four areas: pioneering, outdoor living skills, astronomy and adventure skills. Located ½ mile down the road from Camp Greentop, League Pioneers takes place at Walnut Springs. Participants will also explore the rest of the National Park and nearby Cunningham State Park. All League Pioneers should be able to navigate uneven terrain and be successful in a 3:1 participant to counselor ratio. So roll up your sleeping bags, fill your canteen and prepare for a fun and adventurous primitive camping experience as a League Pioneer!

I'm nervous, because he's never been away from both home and his parents at the same time.

On the other hand, I had a long conversation with the camp director and I really think this is a good fit. It's time for a change of pace. Msk loves being outdoors and doing all the things listed above. I'm hoping that he'll be able to work on socializing. It's been hard to find a way for him to make friends. Very few neurotypical kids his age have the patience or interest to get to make any real bonds. The inclusion setting he's been in for the last 3 1/2 years hasn't given him a chance to try to relate to other autistic kids, beyond hockey, and so far he hasn't seen any of his hockey friends outside of practices and tournaments. Not to say he doesn't have hockey friends.

I'd just like for him to have the time to figure out his own style of making, and bonding with, friends.

So that, along with ESY (unless it sucks, which is a distinct possibility) and a family trip to the cabin, is msk's  summer plans.

Everybody is busy this summer. Plenty of blog fodder, I suppose.

All done

Last year, one (long) day of spring break was spent on our first college tour, and my first post about college applications. Yesterday, the process ended when HSS decided there was no point in going to an overnight at College Park this weekend, UMBC was it. So the college application label for HSS is done. I probably need a new label that captures the concept of panicking and getting whatever is required done to send a child away to college. Not yet. I just want to revel in the sense of accomplishment right now.

Changing awareness to acceptance

April being "Autism Awareness Month", I know I need a post at the beginning of the month, but I really don't have much affinity for the awareness mantra. I guess awareness is a step, but it seems like such a minimal goal. And what does it mean? That you've heard the word autism? That you listen to stats about diagnosis rates going up? That you have some vague feeling about some sort of cause or cure needing definition? That you know someone with autism and you're willing to pitch in by buying a blue light bulb and turning it on? None of these activities mean much to me or to msk, so connection's a little rough.



I'll take passion and joy over "normal" any day

 Two years ago, I posted about moving beyond beyond awareness to understanding. This year there is a relatively big push to change from "Awareness" to "Acceptance". You should read this excellent post by Steve Silberman here that ties together, from many sources, how to make the world a more accepting place for autistic people.

So, following along with the theme of that post, here are my top five ways that people who are interacting with msk could change to make msk's life better - more respectful, more tolerable, more understanding.

1. Presume competence - If you have a hard time knowing how much msk can understand or do just by looking or listening to him, give him a chance to exhibit his skills (in his own way and time). And while you're at it, try not to talk about him like he's not there - honestly, it doesn't seem to bother him, but it depresses the hell out of me.
2. Look at reactions to gauge what can be tolerated - With limited expressive language, especially in new and different situations, msk is not going to ask you to slow down or stop talking. Distress is evident if you look for it.
3. Don't expect quick comprehension of social queues - This is the flip side of #2. Msk has a hard enough time trying to process verbal inputs. If you want to give feedback, state it explicitly, rather than hoping he'll pick up on that disapproving frown.
4. Use simple language, slowly, and wait for responses - Words are tough for msk to process. Extra time and plain talk will give him the most chance at success.
5. Work to include - Once you strip away the expectations you can see what msk has to offer as a positive contribution to a school or a social group or a family. If you really believe in diversity you will spend the extra effort to pull him in. 

And while I'm at it, there are some ways society as a whole could evolve to make life better for autistic people generally.

1. Don't pity - It's a mindset change, but there are different ways to be than "normal". Msk is not depressed about himself, so don't feel bad for him. I'm pretty good with my life, so I could do without the "Oh this must be so hard for you." type comments. If you barely understand what's involved in msk's specific brand of autism, there's no way you know how you would feel if you were him or you were me. Curiosity and questions and seeking to understand are great, but pity is a roadblock to respect.
2. Realize that autism is not just about kids - As much as we've worked to figure out how to make schools work, there's a whole lifetime ahead of autistic youths. There are plenty of autistic adults. Don't marginalize them because they are grown and are trying to figure out a place in society. Respect and inclusion, and the work required to achieve them, don't end at 18 or 21 or 45.
3. Welcome differences - Encouragement should be based on development and growth, not an image of "normal".
4. Listen - It might be non-verbal, but if you pay attention to all communication you can enable self-determination. All people want to have a say in their future. Goals and priorities for a self-determined person are likely to be different than what you presume when you don't listen.
5. Actively accept differences - I posted a while ago about someone calling the police when msk was feeling frustrated and communicating it. This attitude of shaming or confronting people who are acting outside of your idea of normal, with no intention of seeking to understand first, is not going to change anything beyond making a lot of people feel miserable. When you see something different, seek to understand, and to whatever level is appropriate for the situation, accept and acknowledge those differences. We might be talking about a smile and a nod rather than a lecture - it's hard to over-state how much this can mean.

And on the college front

Yes, these are the goofballs that are now somehow or other ready to be thinking about college...sigh

The letters we have been waiting on have started coming in. They're not all good news, actually, so far they've all been rejections. The tally is 8 schools applied to, 3 accepted, 3 rejected, 2 outstanding. Kind of surprising, but not really bad news. Of the schools HSS has been accepted to, two are state schools (UM College Park and UMBC) which have great engineering programs. Plus they have the advantage of 100% of their tuition paid for by the college saving I started paying into about 13 years ago. The third school, Drexel, also has a great engineering program and has given HSS a $10K merit scholarship - $10K doesn't make a private school cost the same as a state school, but it's a start.

So now it's time to make decisions. Tomorrow I drive to College Park at 5:00 pm (anybody who knows Washington DC area traffic knows what a bad idea that is) to take HSS to the engineering open house. We already went to the UMBC Welcoming Reception and Accepted Student's Day at Drexel. We are so close to being done with this whole application process, and I am more than ready to be done.

Oh, did I mention that my other high school student took a PSAT this year (as a sophomore) and my email is now flooded with all the colleges that she's signed up with to get more information? Guess it starts all over again before HSS is even done.

joy...

 

As flappy as we wanna be

Things were too busy and intense to post during the "Special Hockey Extravaganza", but I want to get one post up right away.

I continually struggle with msk's "functioning level" and where he sits on the spectrum. During the Special Hockey tournament it was hard not to compare him to all the autistic kids that were there. Definitely on the low side verbally, disconnected from the game, not really connecting with teammates who were reaching out to him... I know it's never a good idea to compare, but it's hard not to...

And then, on Saturday evening, at the end of the tournament, there was a dinner and dance. And there was msk joyfully listening to the band, jumping and flapping. And it wasn't about function and futures. It was about happiness and community.

There were lots of smiles and fingers in ears and goofiness. And msk fit right in. And it's a good thing.

 

Almost there

Today it's time for:

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.