Two visions, one kid

Sometimes being a special needs parent can make you shake your head.

Last week was our first IEP meeting at msk's new school. This is not a post about a bad IEP meeting. It went very well. There seems to be a plan in place to get to the mod MSA (we were doing an Alt MSA for the last 2 years), classes are generally going well and I now understand how special education services are working. Lots of positive stories were shared and I'm feeling pretty good about our middle school choice.

After the meeting, one of the team members asked to have a little private discussion with my husband and I. There was a lot of hemming and hawing. Eventually she explained that she was concerned that msk was only doing well with lots of support and accommodations. What was going to happen when he aged out of school and all that support? Maybe msk should be in the life skills class. Not because of an intellectual disability - everyone agrees he's very intelligent. The problem is, will he ever be able to live on his own? She was worried that he would spend his adult life trapped in our house or worse yet, in an institution. I explained how the autism waiver was providing services outside of school to work on going out in the community and general survival skills. I explained that we really want to be on the diploma track. I didn't get defensive or anything, but clearly her vision of msk's long term potential was pretty low, and she's trained in the field.

The very next day msk's behavioralist, b-d, pulled me aside. He wanted to tell me how happy he was with the progress msk has made in the six months since he started working with him. Slow, incremental improvements, but on track for meeting his goals. He said what a sweet kid msk was and how much he enjoyed working with him. Then he explained that he was a little sad about this progress, because it indicated that msk wouldn't be on the autism waiver eventually. In other words, he wouldn't be disabled enough anymore. In the long term msk is going to be living independently. I didn't argue, but honestly I have a hard time seeing it. This is a kid who can't tell you what happened today at school; who can't consistently answer any questions, much less hold a conversation. He's going to be able to get a job, pay bills and live on his own? That's hard to visualize for me.

Two experts with totally different visions. I've got no idea how to plan for his future, or my own for that matter.

Therapy

Therapy is in order after way too much stress with kids and work of late. I've decided knitting (and patting my dog) is the best therapy. To the left a wrist warmer using my newly acquired cable knitting skill. I like the symmetry of patterns and the fact that I have to concentrate or it gets screwed up.

I hope to be back to posting again soon. Eventually I might be able to post about the kid based stress. Maybe a little more knitting first...

October kills me

After reading this post over on Epiphany in Baltimore I thought I'd chime in with my own story of being overwhelmed.

Here without comment and no edits is my Google calendar for the next two days:

Today (Fri, Oct 22)
5:15pm
D&D club pickup
4:35pm
Kk's sleepover drop off
7:00pm
Monk dinner/sleep over drop off
Tomorrow (Sat, Oct 23)
2:00pm
Kk's sleepover pickup
9:00am
Monk dinner/sleep over pickup
8:30am
U’s field trip to DC (start)
8:45am
Hockey practice - R (start)
1:00pm
Cookie Depot (start)
5:00pm
Pick up cookie orders (start)
7:00pm
U’s field trip to DC (end)

Well...maybe one small comment. There's a "can't miss" deadline at work looming ominously. I won't go into what that means beyond hours are longer and stress is way turned up

image of stress fracture

Cautious optimism

So, I think - I hope - msk has found a place to spend his middle school years. I haven't wanted to jump to any conclusions. And I know that there's going to be some tough times over those three years. But, I'm starting to relax, at least a little bit.

It's hard to not be apprehensive, because this is such a big transition. Middle schools are huge - they've only got three grades, but this school is twice as big as the elementary school he was in last year. Twice as big with only half as many grades, so that means four times as many kids per grade. And this age - adolescence and puberty - it's pretty super charged. I've noticed it with msk. There are no more breaks for the slightly odd-seeming child. He's a youth now. There are a lot more disapproving glances. And his new classmates? They're just not all that cuddly; they can even be a little scary if you don't look too close.

More than a few people with special needs kids have moved them out of an inclusion setting at middle school. There were stories of teasing and unhappiness and separate classes that had no meaningful interactions with "mainstream" classes. I’ve heard of fights and lawyers and non-public placements or homeschooling. Those are directions that really aren't too good for msk. Scary stuff.

But after meeting with msk's teachers I know the feeling of this new school is welcoming. Msk is included into the shifting grouping of about 125 sixth graders. He gets some special education pull-out services to help him achieve some academic goals, but mainly he's included. The teachers are very positive. They're open to trying to do things a little differently. They already see a positive impact on his classmates - they're learning about being open-minded. His classmates are always saying hi and including him, even though eye contact and responses from him are pretty limited. They've reached out and given him a chance and they seem to genuinely like him.

It feels great to just take a short break from the worrying.

Of course there's always room to worry about the 14 and 16 year old girls that live in my house... no need looking for trouble, I guess.

Butterflies in my stomach

I'm girding my loins tonight with mojitos - tomorrow is our first IEP meeting at msk's new school. I realize that's an incongruous metaphor, but it's the phrase that comes to mind. I must make myself strong, not for war, but to successfully advocate. I know that msk deserves the best education that we can carve out for him, but it takes a little coaxing to bring out the best a school and a group of teachers have to offer. I need them to see things from our perspective as we try to channel msk's needs. I know, I hope, I feel, that everyone wants to support him, but it's my job to share what I know about him and what has and hasn't worked in the past.

The task will stretch me, but that's good - I want to grow. But the night before, it scares me. I worry over small details. Should I bring lunch for everybody, or a snack? Will I go back to work after the meeting? Really, though, I'm just waiting. It's such an important task - to speak up for a kid who needs so much, but is worth every effort. It's painful, but I want to hear about all of the problems he's having in school, and jump in with supports and hints.

I'm chewing my nails as I have another drink.

10/30 Update - YAY!!! Doing the happy dance now!

Don't hold back; tell me how you really feel.

So, I blasted off a response to a comment blaming all education problems on ineffective teachers. That comment was in response to this article from the Baltimore Sun:

I won't disagree that ineffective teachers are a problem, but in my experience over 8 schools and 11 years with my three kids (yes we've had to switch schools several times for various reasons), the bigger problem is incompetent principals. Maybe they aren't so much incompetent, as driven by other factors than providing an excellent education for every student at their school. They reward teachers, not for doing a good job of teaching, but because they don't speak badly about the principal. They shun involved parents because they want to be 100% in charge and never have to justify a decision to anyone. Teachers who make demands or raise hard questions or ask for administrative support are pushed out. Those are usually excellent teachers.

Bad teachers do hurt a classroom of kids for one year. In my experience the biggest issue is inexperience and in the course of a year they get markedly better. Bad principals, on the other hand, affect every classroom for multiple years. Only a very good and strong teacher can be effective with a bad administration. Bad principals hurt vastly more students than bad teachers.

Oh, and in the city there is a union that represents administrators. Plus, with all the political connection they make, they are nearly impossible to fire. How many years have people been fussing about City's principal before he left?

So far, so good.

So it's the end of the fourth week of school and I think I can talk about my impressions of msk's new school without worrying about jumping to conclusions. Last spring I wrote about my terror of being forced into a new school and pleaded for the extension to 6th grade of msk's elementary school. Alas, it was not to be, and I have tried very hard to judge his new school, his middle school, on its own. No baggage or regrets about what was left behind.

Msk usually does better at the very beginning of the school year (assuming he has his supports in place) because everything is new and challenging and it demands his attention. We followed that pattern with a week or so of very positive reports. We also hit a low point where the reality of "this is where you're going to be for the next nine months" sank in. Boredom, anxiety, lack of focus and some attention seeking behaviors poked through. I'm happy to report that the reactions to these behaviors must have been what he needed, because after 3 or 4 days the bad reports started to be more moderate, and now we're back up to mainly OK days.

I was terrified by the thought of homework after six years homework-free. The first two nights were hellish. I really try to stay positive, but msk was just not into me getting him to do school work after he had made it through the day. Happily our incredible behavior-dude or b-d (provided as Intensive Individual Support by the Autism Waiver) started doing homework with msk. At first, just the relief that I didn't have to work on homework was what I focused on. Then, when there was a school night when msk didn't see b-d, I found out that msk really wanted to do his homework. Talk about a shocking turn of events. My neurotypical kids have never been so motivated to independently do homework.

The level of work that msk is doing, also surprises me. I think putting him in a new school let people reassess his academic capabilities and they found he could do a lot more than we knew. Maybe a transition can be a good thing, even if it's incredibly scary.

So, the start of the year is behind us. Coming up next is a team meeting. I'm nervous, but I look forward to hearing everybody else's assessment of how he's doing. Then it'll be IEP adjustment time. Exciting times!

image - msk & a leap of faith

Changing gears

For me, the end of summer isn't so much of a demarcation line, as a series of bittersweet occurrences. It leads inexorably from the free, open, comfort of a late summer evening spent in the back yard, to huddled, housebound days of a snow storm or a string of days with highs below freezing.

In chronological order this is how summer grinds to a halt:

1. The cabin vacation ends and we bring the linens home to be washed
2. Summer reading is completed and school supplies are purchased
3. The alarm gets turned on again after a long break and we all rise on schedule
4. The incessant ritual of daily lunch packing and weekly laundry becomes the norm
5. Scouts and Girl Scout Cookies sales, along with mandatory training, start
6. Fans stop being turned on and slowly get put away
7. The monarch chrysalises appear in the front yard
8. After weeks of not being used, the pool gets winterized

It's all a natural cycle, and I like trading the whir of fans for the chirp of crickets. Still, it's hard not to feel a little sad at the change of pace.

Another late night

So this morning, when I got into work, I looked at my feet and saw purple Crocs...These are my ugly/stupid shoes that I wear to walk the dog or take out the trash as the truck is coming or some other non-public event. What the heck am I doing wearing them into an office? The short answer is not enough sleep.

When people think about the trials of parenting and staying up half the night, they picture crying babies. When my kids were babies, they slept. I kept them close at hand, and nursed as required, so no getting out of bed, warming bottles or pacing and singing. I know I was lucky then. Now? Not so lucky.

My sleep stealing demon is homework. And instead of being measured in months of sleep issues, homework issues are years. Really, I see more than 1.5 decades of torture between 3 kids. And the worst are these stinking projects. I think there's a concept that long term projects help kids learn planning and organization. HA! I'm fairly sure the only thing that's being learned is that there are multiple ways to screw up a big project, although all of them are variations on the theme of procrastination.

So here's my attempt at being a "good" "supportive" parent of a kid who has a project:
1. Ask every day how school is going and if there are projects in the works for any classes
2. Once a project is mentioned ask how big it is and how long you've got to accomplish it
3. On the weekend before a project is due ask how much more has to be done over the weekend
4. Throughout the weekend periodically ask for status updates, i.e. "How's that project going?"
5. Help when asked if possible, especially when it comes to printing/scanning/formatting/proof-reading.

So why, with such a reasonable plan, did I end up not getting to sleep until 2:00am with a 6:15 alarm bell? Middle child decided that open, honest communication cramped her style and kept her from having fun. And the more often I asked, the harder it was to admit that she had not started on said project. After repeatedly being told on Sunday evening that, "I'll be done in just a few minutes" (how can you be minutes from being done for more than an hour?), I went and saw that a multi-page project was barely started at 8pm.

That is where an evening of unpleasantness started:
1. "Clearly you can't be trusted to work in your room - come downstairs so I can watch you work."
2. "Did you think I would never figure out you were lying to me?"
3. "Do you think this project, rushed through while you’re crying and sleepy, will be a good reflection of the work that you are capable of?"
4. "Put on headphones, because if I'm going to have to stay up half the night while you do this, I am watching some Netflix that is not kid-appropriate" - Dexter, in case you're curious.
5. "You know there's no way that I am helping you in any aspect of this project, right?"
6. Variations on the above statements with an emphaisis on "What is your plan now?", "What were you thinking?", "How are we going to keep this from happening again?"

So, the project (that I barely looked at, besides to say "Don't you need a date and class number on the cover?") got completed at around 1:00am. I was so spun up from lecturing that I couldn't fall asleep until 2:00am and am now pretty much of a basket case. Plus I kept on asking myself how I had been such a failure of a parent to get into a situation like this. What should I have done differently either short term, or long term?

At this point a crying infant and pacing/singing through the night seems more rewarding.

The perfect comic

Kind of sums it all up, doesn't it?

Thanks to Baltimore Diary for helping me find a new favorite webcomic.