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.

- 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.

A new info source



Not Link, a link to a website...

 I received an email introducing me to Education News. Usually these types of emails are kind of spammy and introduce me to sites that I don't think are very relevant to my blog.

This site is actually very relevant and interesting. I enjoy online education discussions, but have found only a few sites where this happens. Inside Ed had been the primary place I went to discuss issues about Baltimore Education, but their paywall and new blog layout seems to have totally killed any commenting or discussions. Ed Week is another source, but I really feel like parents are not their audience so I don't go there that often.

Anyway, you might want to check it out, and on the right sidebar you'll see a link to the rss feed and the headline post.

Waiting

If we're waiting on five colleges that all say they'll send notices sometime in March, do you think it's too much to ask to have gotten at least one by the 15th?

Guess in is. Sigh...

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.

Words hurt

Today is the day to speak out against using the term retard and retarded. I have taken a pledge not to use these words and I will speak out when I hear them used.

There are a lot of stories about how these terms hurt. The best place to start finding these stories is at http://www.r-word.org/.

Personally, the R-word has hurt me. Msk has strengths and weaknesses, gifts and challenges. There are many different kinds of intelligences, and his rankings on these swing all over the place. Even in areas where he's most challenged, I'm thinking expressive language and social interactions, he is not a joke or an insult to be thrown around. When msk's classmates throw the term around at each other as a joking insult and then talk to me about how I feel about msk being retarded, I am hurt.

Inclusive education is a learning experience for all parties. One of the things I have seen is attitudes change about assumptions. But to move from changing attitudes about a specific person to a more general understanding, the blanket, hateful terms need to end.

Please go to http://www.r-word.org/ and take the pledge.

"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.

Worthy of support

Msk plays on a hockey team for kids with developmental disabilities - the Baltimore Saints. They are having their yearly fundraiser, the Saint-a-thon, this Sunday (3/4/2012). It's a great team for kids that typically don't get to play on sports teams. If you would like to contribute, please get back to me by comment or email (link on right sidebar) before Sunday so I can enter you on the pledge sheet. The team is 501(3)C registered, so you can write the donation off your taxes.

More info is here - http://www.leaguelineup.com/baltimoresaintshockey/files/Saintathon_Release_2012-cmo.pdf

You can also directly contribute on baltimoresaintshockey.org via the "donate" link on the left. If you notate for #45 msk will get the credit, but really, supporting the team is the main point.

If you go to the site, be sure you check out the photos. What a great group of kids!

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.

Keep on keeping on

Today was a long walk in the park - msk, the dog and me. On the 26th of February it seemed warm, even though the weather report said today would be the closest to a typical winter day all week.


There were flowers peaking out in many places, and it seemed like a rash choice to me. March snow storms are not all that rare. But I suppose the window of opportunity for these types of flowers is narrow. If they hold off too long and we get one of those early and warm springs they might not get a chance to bloom at all.


A hard choice, that you really can't feel all that secure in, but is pretty crucial and life changing.


I can't tell you how many times both HSS and I have swung back and forth about picking a college. Big, small, debt, affordable, reputation, reality...too many variables for a solvable equation. For msk and this high school path...I'm not sure there is any choice that feels OK. He needs to have a meaningful place in society, but don't know if society wants to make that place for him and these high school choices feel like they are limiting him.


But worrying and flipping and regretting and anger and depression... they don't help. So you put yourself out there and you make a choice and you figure out how to make it work. Because really? I don't see an alternative.

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.

Catch 22 on steroids

You win - I give up

At the end of this post I said I was going to wait to talk about the joys of trying to get insurance coverage for medical services related to autism. I guess I'm ready to talk about it now.

So, hopefully everybody knows the Catch 22 from Joesph Heller's book. The basic concept it that if you're crazy, you can get sent home from your military service, BUT, if you have enough self-preservation instinct to want to get out of your military service, you're not crazy enough. Another defining aspect is the rule has to be instituted from above, from a bureaucracy that you can't approach or question.

Many things about autism are just like normal, but more intense. A simple question feels like being given the third degree in the police station. A food with an unexpected texture causes gagging. Slightly off-key singing is fingernails on the black-board annoying. I guess it only goes to reason that the autism medical Catch 22 takes Catch 22 and raises it to the next level. You get not one, but two bureaucracies, but that's not all.

Here's how it works:

• You need assessments to get Special Ed services and to get the right services for an autistic individual, you need someone who understands autism* to give neurological or cognitive assessments**
• The only assessments the school system will pay for are from generalist who don't have an understanding of autism
• Your medical insurance will fund neurological assessments, but only if they are far enough removed from education needs to not be deemed as redundant to something a school system would give
• If you contact a medical provider who will be funded by your insurance and ask them to tailor their assessment to educational needs, they will tell you that they have a standard evaluation and that there is no way to do anything different
• If you find a provider who will give you a neurological assessment that is suitable for educational use, they will tell you that they don't deal with insurance companies because they typically won't cover an assessment that is usable, but because of that they can charge about 20% of what a full blown, but unusable assessment will cost
• When you contact your insurance company and ask if you can be reimbursed for a medically based assessment that costs much less than an assessment that they will cover, and you're willing to pay up front and wait for reimbursement, they will tell you that there is no out of network coverage for behavioral health issues
• When you explain that this is a medically based assessment and you do have out of network coverage for medical services they will explain that neuro-psych is not medical

Here are your bonus point questions if you have made it through reading all that nonsense:

1. How many hours of my life have been lost to mapping out the mysteries of this total dead end?
2. Where the money will come from to have a usable assessment done?

I'll give you the answer to #2 - that same big bucket of money that our FAFSA form said we could afford to pay for college every year that I have yet to find.

* - A valid question as far as this "someone who understands autism" goes is how are you expecting to get appropriate services from a generalist? I believe that if you have a kid like msk who's generally cooperative and if you have a provider who is willing to do some research and follow the lead of the kid and if  the provider genuinely wants to presume competency both from the kid and the parents, services can work out quite well. I know there are a lot of if'sinvolved, but it is doable.

** - I want to emphasize that we're talking about neurological assessments - pretty much the heart of what it means to be autistic. Assessments that are on the edge of autism and deal with symptoms (for example speech and language or an educational assessment from a special educator) can have valid results when there's not a lot of autism-specific interpretation going on. In terms of cognitive assessments, IQ results for autistic individuals are notoriously unreliable. I you don't believe me you can google it or look here or here.

Overwhelmed

Beaker's stressed

As soon as I came in the door last night I was copying income tax forms and trying to figure out where to mail what. This is the last part of the financial aid process for three schools. Then there's another school that only wants you to fill out their application if you get accepted. Then there's the one school with a scholar's program that has a separate application from their main application, with a deadline a month and a half later after every other deadline was over...totally missed that one.

Honestly, this part of the process seems needlessly complicated. And stressful.

They want to know how much I make and how much I save and how many dependants and if there are special education expenses for a sibling and whatever else...fine. It would be nice if all the schools and scholarships and whoever else wants to know could get together and just ask me once.

And then there are all these obscure scholarships that keep on coming by email that I can't keep up with. Why does this need to be so hard?

I'm stressed and I'm snapping at my husband and HSS whenever the topic of financial aid comes up.

Last night I had a vivid dream that HSS had decided to apply to another college without telling me and I realized I hadn't included that college on the FAFSA or the CSS. It seemed so real I had to ask this morning. I believe that qualifies me for officially cracking up.

Plus there's the joy of trying to get insurance companies to pay for medical/behavioral assessments as we get ready for the next round in the wonderful world of IEP meetings...but that's a topic for another post on another day.

The path ahead

Ease on down, ease on down the road...

One thing the last four years have taught me, is that an open heart and an open mind can accomplish a lot in a situation where autism-specific experience is pretty low, at least as far as msk's education goes. We've jumped a lot of obstacles to get on, and stay on, a path of inclusive education. I will happily talk about the merits of inclusion for kids with significant disabilities with anyone who wants to. We've also become pretty good at supporting schools and teachers that support msk. I mean both general support of the school, and specific help in understanding and working with msk, which in turn helps any other special needs students who are following a similar path. All in all, I think everyone involved has grown a lot from the experiences involved in msk's inclusive education. I know I certainly have.

There is however a limit to blazing new paths and figuring it out as you go. Given the Grand Canyon-like split between services when in school and services when you finish school, it seems like that limit might be high school for msk. It's sad, because inclusion has pushed and pulled him to such advances in academics. And behaviorally, he's doing amazingly well too. The guy who couldn't stay in a seat, who couldn't keep from saying those words that made all the other kids laugh, who we worried so about eloping? He's now getting his work done, answering questions and getting on the honor roll.

But I need to be honest, and with a kid with the kind of challenges msk's got ahead of him, we need to understand the system of supports that he can access. What we need to find is a school that still cares for him and values him as the last two schools have. He also will still need real academic challenges and peers to model. But this is a kid that's going to need support once he turns 21, probably lots of it. We need to be planning for that transition from the day he starts high school. We need to learn from people that know where to find vocational training and a job coach. We need to find people that can help him reach his full potential, whatever that turns out to be.

I know that finding this school and getting msk settled and thriving there is going to take a lot of hard work, but work seems a lot more appealing than worrying about changes.

Acceptance #3

leaving tributes

So yesterday HSS received her third acceptance letter, or email, or really a web-link to an acceptance page. University of Maryland has a great engineering program and my college savings will pay for 100% of the tuition, so that's pretty good. It's a scary-big school though, so I guess that's a decision for down the road. Acceptance-wise HSS is 3 for 3, but we've still got 5 more colleges to hear from. And financial aid packages as well.

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

Another checkmark



what's under that kilt?

So this weekend marked the final college tour for HSS. I know a better order would have been to do this before submitting all the applications, but Pittsburgh is the furthest location for HSS's school choices.

This was also the only visit that involved a significant amount of time away from parents and in the company of actual students. It certainly leads to a different perspective. "College students are crazy," was the opinion after spending a night as a "bagger" with them (the event was a "Sleeping Bag Weekend"). Nothing new there if I can remember back 30 years or so.

With this weekend every school has a first hand image in HSS's mind and additionally, they all know that the application is pretty serious. I'm not sure it's universal, but more than a few of the schools have mentioned that a visit and an interview help tip the balance in your favor when they're comparing applications. I guess that makes sense, but I didn't visit any of the schools I applied to. Times change.

So now we wait for the big :-) or not so big :-( envelopes to finish coming in. Sigh.

Who should choose?

Leadership

This post follows and depends on Thursday's post, so you should probably read it first. I came across an online article in Time about allowing parents to choose teachers for their kids. While I'm all for school choice, I've got to say that this sounds like a bad idea to me. I will admit to wishing my kids didn't have some of the teachers that they did, but was I supposed to research all of their teachers ahead of time? In reality, I think class schedules are done days before the start of the school year, so there's no way that would work. Plus, isn't assigning teachers and making schedules a management task?

Let's look at it a different way - if I've chosen a school, doesn't that mean I've chosen the school's leadership? If a school is riddled with bad teachers, doesn't that say something about that leadership? If there are a few weak teachers, how will they improve without support and a chance to practice? My experience with first year teachers has been, so-so at best, but if no parent chose to let their kid attend a first year teacher's class... It seems like a disaster to me. If you're in a total disaster of a school, cherry-picking the few remaining great teachers in that school is not going to work for long. If you can figure out who those great teachers are, don't you think all the other parents can? And then what - a race to register first and get those teachers?

Beyond the incendiary headline, I guess what Mr. Rotherham is really advocating is for parents to be the squeaky wheel that demands a specific teacher and complains and whines enough to get their way. Obviously, this only works if a very small minority takes his advice. The rest are just bad parents in his book, I guess. My choice is pick a school with excellent leadership and let them do their job. I will support a school that I think needs my support, with energy spent on improving it, rather than whining to benefit of my kid and the detriment of everyone else's. If that makes me bad, so be it.

"The principal should be your pal."

Yesterday, to my mind, was a starting point in figuring out msk's next school. We had a meeting with a professional who's helping us. In the midst of trying to plan for msk's educational future, I said how happy we were with the principal at his current school. I went on to say how crucial that's turned out to be in schools where msk has done well. She vigorously agreed and we moved on. It made me think about doing a post on the concept.

Having an excellent principal makes so much difference on the day to day educational experiences msk has, and to the contrary in schools that he's had problems... but let's keep on the positive side. A great principal energizes and motivates teachers. You can feel it every time you talk to them - how lucky they feel to be at this specific school. With a miserable principal, teachers can still be excellent and motivated towards their students, but they continually fight (either openly or more often covertly) to do what they know they need to do to have an excellent classroom experience for their students. And not every teacher is that excellent. For them, the quality of the principal makes all the difference. A poor principal has them focusing on the wrong things - things that have no positive impact on students. I've seen incredible cruelty and disinterest by teachers when they spend all their time and energy trying to figure out how to make points with a despotic principal. And you shouldn't undervalue the general school atmosphere - joy leads to learning, while misery leads to yelling, in my experience.

Joy just flows flow in some classrooms

I have no idea how you could objectively rate principals any more than how you could objectively rate teachers. I do know that it will be one of the big things we will be looking at as we try to find msk's next school.

Plant cell

So, although we made the cookie last week, msk's cell project wasn't due until this week. Guess I need to do a better job reading assignments, but typically these things seem to come in at the last minute. We did the decorating tonight.

Key:

• Cell Wall (protects the cell) – Dark green cookie on edge

• Cell Membrane (regulates what enters and leaves the cell) – Green frosting

• Cytoplasm (fluid inside cell) – Light green cookie 

• Endoplasmic Reticulum (Network of passageways) – Gummy worms

• Nucleus (Cell control center) – Red gel frosting

• Nucleolus (center of nucleus) – Red and green cookie

• Mitochondria (produces cell’s energy) – Pink twizzlers

• Chloroplasts (captures energy from sun for food) – Green twizzlers

• Golgi Bodies & Vesicles (Receives & sends materials) – Orange twizzlers & skittles

• Ribosomes (produces proteins) – Rainbow sprinkles

• Vacuole (stores food, water and other materials) – White frosting patch