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.
Sunday, December 12, 2010
Monday, November 22, 2010
Friday, October 22, 2010
D&D club pickup
Kk's sleepover drop off
Monk dinner/sleep over drop off
Tomorrow (Sat, Oct 23)
Kk's sleepover pickup
Monk dinner/sleep over pickup
U’s field trip to DC (start)
Hockey practice - R (start)
Cookie Depot (start)
Pick up cookie orders (start)
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
Friday, October 1, 2010
Wednesday, September 29, 2010
Sunday, September 26, 2010
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?
Friday, September 24, 2010
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
Monday, September 13, 2010
- The cabin vacation ends and we bring the linens home to be washed
- Summer reading is completed and school supplies are purchased
- The alarm gets turned on again after a long break and we all rise on schedule
- The incessant ritual of daily lunch packing and weekly laundry becomes the norm
- Scouts and Girl Scout Cookies sales, along with mandatory training, start
- Fans stop being turned on and slowly get put away
- The monarch chrysalises appear in the front yard
- 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.
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.
Friday, September 3, 2010
Friday, August 27, 2010
We didn't have AP classes when I was in high school, so this is pretty new to me. Yes, I know this makes me terribly old, but it is true. Back in those days you got into college based on grades and SAT scores, and high schools were judged on the basis of...I don't know how we judged high schools. I only know "good" colleges recruited at Western and a reasonable number of kids were accepted and graduated from these schools. We had some advanced and high level courses, but the subject matter and curriculum was not based on a test that we would take. My impression (as a student) was that they were based on what teachers felt passionate about. I took "Russian Literature and Existentialism", "The History of Political Thought" and "Analytical Chemistry" in my senior year, if memory serves me. Somehow I survived.
I'm only asking because my understanding of AP classes is that you are doing college level work. I know my kid is smart and all, but I've got my doubts that she, and a whole class of her peers, are really going to do college level work at this point. 9th graders just don't have the practice to quickly spit out thoughtful essays. I'm worried enough about the middle school to high school transition. I know it's got her a bit nervous as well. She said to me, "I'm having second thoughts about this AP class." I responded that as no one had asked her if she wanted to take an AP history class in the first place, (and history is not her favorite or strongest subject) she can have as many thoughts as she wants, but they seem irrelevant.
It's hard not to be suspicious that this class is being driven by the fact that Newsweek says you can judge a high school by the number of AP classes it offers.
Wednesday, August 25, 2010
I'm no Thoreau - three kids, a dog & cat, plus a husband in tow - but a week plus of solitude away from the net and the phone and the tv seems very enriching. I admit there's a grocery store, so we're not living off the land. And with a ride or hike out of the valley the cell phone will work, but it's not a regular thing. So what fills in the empty places left by the absence of the grid? Well...
1. I can now identify a beech tree and a sycamore tree
2. I've moved paw-paw's from a song lyric to a fruit I can find and eat
3. A really big mushroom book can be overwhelming, but finding and looking at mushrooms, which appear so quickly, is like searching through coral reefs when you dive
4. A long, daily walk, on the same path, reveals a nearly infinite number of different things to look at
5. Even though a stream always moves if you can be still in the movement it is very peaceful
So there you have it - ten days in the woods of Harford County. A liberal in the land of Erlich signs, but I loved it. Peace, what I need five days before the start of a new school year.
- Posted using BlogPress from my iPad
Monday, August 2, 2010
I've got more than a few issues with this, but let's start with the first that is driving this post. Msk did not miss 175 days of school last year. I don't have a calendar where I wrote them down, but I'm guessing he missed 2 or 3 days. I realize he's changed schools every 2 years for the last 6 years, so he might be a little hard to keep track of, but get your attendance system together before you send me threatening letters - $100 fine per day, the importance of education...blah, blah, blah.
In calling around, it turns out that many of these threatening letters were sent out in error. Makes me distrust the whole accounting process of figuring out truancy and attendance. Perhaps the data driving Dr. A's email "Learning from Our Results" was equally flawed. Hard to feel a lot of confidence in these type of hard data pronconcements.
Beyond my general smoldering anger about being told that I need to start caring about schools, I've got another problem with truancy as the cause of all of the school system's problems. I know there are legitimately chronically truant students, although my son isn't one of them. It's pretty easy to dismiss them all as thugs with parents who don't care. If that were the case there would be a single problem to attack, and it would have very little to do with improving the schools. I can quickly think of three other reasons a kid might not be in school that do have to do with what is happening in our schools:
- They are being bullied so mercilessly that they feel cutting school is necessary for survival
- The atmosphere in the classroom is negative towards students from the teacher and/or administrator that they can't see any point in attending - they've bought into the pronouncement that they are a lost cause
- The school situation is so poor/unsafe/unproductive that a parent keeps them home while working on getting them transfered to another school (I could talk about ESY again...)
Tuesday, July 6, 2010
The basic concept is that it is cheaper (not to mention more humane) for the state to support caregivers of young people (under 21 years old) with autism than it is to pay for institutionalization. So basically the requirement is a diagnosis of autism and a level of disability that meets someone's definition of severe enough. The whole institutionalization strikes me as theoretical given that institutions are closing while the number of people with autism diagnoses is going up. Another requirement is that the waiver recipient be in public schools or have a non-public placement through the public schools.
So what makes the waiver so great is the support that it provides. Your child gets medicare coverage regardless of your income (the income requirement is what is waived for the waiver). Medicare has great coverage of therapies and medical equipment - strangely much better than the coverage of my work's expensive medical insurance. You also get support beyond the school day and the doctor's office. Therapeutic Integration provides a safe and structured after school program for kids that can't attend a typical after school program. Then there's intensive individual support where a behavioralist works one on one with your child. There's adaptation support to make your house autism-proof; locks alarms and the like. Finally there's respite care to give a break and maintain sanity.
What does the autism waiver mean to our family? This summer it has saved our sanity. Msk needs structure and a lot of attention. Last summer ESY provided this. This summer ESY didn't work out - it just wasn't an appropriate or acceptable placement. If it weren't for the waiver it might have been our best option. With the waiver msk is doing worksheets, playing soccer, getting out in the community, and much more. He's missing out on socializing with neurotypical kids, but that'll come with the school year.
Downsides? The biggest is the limited number of seats and the multi-year waiting list. I could also do without the yearly interview to prove that msk is disabled enough to deserve support. Something about sharing all his challenges and limitations seems like a betrayal, not to mention dwelling in the negative is depressing.
All in all, though, it's a lifesaver.
Tuesday, June 22, 2010
So after a little investigation I think this is the process for making ESY assignments:
- Make a list of all the kids who have ESY as part of their IEP
- Figure out a random but relatively close school that's offering ESY
- Split the kids randomly into classroom sized groups
- Tell the parents at the last possible moment with the least amount of information possible to keep from having to justify or change decisions made by following steps 1,2 and 3 above
Last year I gave up on trying to reason with brick walls. Every question got the same response
How can it be that during the school year inclusion is the proper setting, but during ESY special needs exclusively is appropriate? Talking to three levels of bureaucracy and always "We don't do it that way"
Would be possible for msk to go to a mainstream summer enrichment program with an aide? "We don't do it that way."
By excluding special needs children from summer enrichment programs, aren't you discriminating against them? "We don't do it that way."
When you make an ESY placement, couldn't you consult with the IEP team or at least the ITA? "We don't do it that way."
I had no expectations that ESY would work out. Somehow, it did. I thought everything would fall in place this year. When I asked the same questions there were new answers. Oh, it seems like the mainstream enrichment program would be perfect for him. Last year they wouldn't have provided an aide for him. This year? He would have gotten an aide, but now it's too late
Here's the question I'd like to ask, but given that I already know the answer I won't bother: Why don't you come up with an ESY process that provides differentiated and appropriate education to special needs kids while involving parents and listening to both their concerns and suggestions?
And the answer is... "We don't do it that way"
Saturday, June 19, 2010
So, if you haven't really figured out the balance-control thing on your brand new motorcycle that costs more than my car? How-bout you don't go 55 in a 25 zone at the t-intersection in front of my house and drive through my garden? I guess I should be happy that you got it together before smearing your brains on the corner of my house and ending up in my living room. But honestly? It's the trauma of seeing the blood and gore and not any sympathy for your sorry (probably crime-filled) life that makes me say that.
Friday, June 18, 2010
Sadly, that's not the case.
Today, exactly one week and a weekend before the start of ESY I got a letter about msk's placement. Not much advanced notice, eh?
And as far as details of what the program is and if it's a good fit? Nothing but the name of the school. Did they talk to anyone on the IEP team? No.
Last year this exact same situation (well, actually it wasn't nearly this last minute, it was 2 or 3 weeks before ESY) spun me up like a top. This year... breathe in, breath out. I calmly and politely called North Ave. I'll make sure this is a good fit and we'll figure out how to get him moved if it's not a good fit. I'll take it in stride.
I may be getting an extra 10% - 20% more grey hairs every year, but at least I learn from the experiences.
photo - time timer ipod app
Saturday, June 12, 2010
The meeting room was packed and both the board and the general public seemed engaged. That's a good thing, I guess. What's not so good is that even in this presentation with mainly history, there was a lot of political posturing going on. I'm not sure how the next meeting, that's supposed to actually discuss changes to policy, will end in decisions being made.
I also worry that statements based on what some charters do, are going to end up making things harder for all charter schools. Maybe I worry too much.
The next meeting is scheduled for Tuesday, July 13th 7:30 pm‐8:30 pm.
The thing about leaving a burning building is that you don't spend a lot of time thinking about how good a fit the next place is. Really, getting out is more important than where you're going.
This year is different. Is this the right place to be going? There's a lot of chaos in a school this size with kids this age. msk is not into chaos. My theory is that so much of the world and life is confusing to msk he just has to find order in his schedule. Lately his favorite iPod/iPad app is the calendar. He goes back to last summer and forward to next week. He quizzes me on what was and what will be. I fear that that kind of order won't exist in an inclusive middle school setting - even with an aide helping him along.
And then the doubt. Is msk in an inclusion setting because it's best for him, or because of some sort of theory of what is "right"? All this figuring it out as you go seems horribly unfair to him, and to all my kids for that matter.
The pendulum swings to a dark place tonight.
Friday, June 11, 2010
So here I am, after eleven years, continuing to educate my kids in Baltimore City's public school system. This is not a district known for excellence in education and yet I'm trusting them with my most precious offspring. And especially msk, who has some pretty serious issues due to his autism. What am I thinking?
For a start, I've found that the perceptions from people who don't live in the city and/or who don't have special needs kids have a lot more to do with fear than reality. For this post I'll just focus on special education. We've been able to carve out a pretty decent education for msk here (of course there's always room for improvement). A few things have lead to this situation, that we could only find in Baltimore City's schools:
- The CEO of the school district previously was a special educator and then head of special education in New York City. And because he was hired to turn around a district with entrenched problems he was given a lot of power. I've heard him say some fairly harsh things in the past, but never once has he questioned the need to educate special needs kid nor has he said anything denigrating about them.
- Baltimore City was under a court order because of special education problems. This means there's a lot of grumbling and a lot of extra paperwork, but it also means that they are pretty careful about following the law (with exceptions when kids don't have involved parents, but that's another issue). After many years this is coming to an end, but those years have been educational for teachers and staff.
- Because Baltimore has a lot of troubled schools we lead the state in opening charter schools and if you find a charter school with a principal that values educating special needs kids they have the power and autonomy to make that happen.
Some really awful things have happened lately in special ed. Look over at the Club 166 blog for stories related to bad things in Los Angeles and Georgia, just to name a few. I think if you care about special needs kids, these situations are definitely infuriating. On the other hand it's important to look at your own school district and acknowledge when things are going right.
That's the point of this post.
Monday, June 7, 2010
The Baltimore City Board of School Commissioners will hold a series of three work sessions to provide the public an opportunity to learn more about its portfolio of Non‐ Traditional Schools (charter, transformation, innovative and new schools.) The work sessions will be held at the Alice Pinderhughes Administrative Building, 200 East North Avenue, Baltimore, MD 21202 on the dates and times listed below:
Work Session II Tuesday, July 13th 7:30 pm‐8:30 pm Room 301
Work Session III Tuesday, August 16 TBA 1st floor boardroom
-Interested members of the public are invited to attend all three work sessions and observe the deliberative process.
-The June and July work sessions are designed for the board to receive information from staff and discuss policy issues related to City Schools’ portfolio of nontraditional schools. Accordingly, public comment will not be taken at June and July work sessions.
- The August work session is designed for the Board to receive information from various stakeholders. Public comment will be taken during the August work session.
The Board may convene in a closed session, in accordance with the Maryland Annotated Code, State Government Article, 10‐508 if any portion of the meeting should be held in closed deliberations. Before any closed meeting is convened, the presiding officer will publicly identify the section or sections of the Act authorizing the closed meeting.
Sunday, May 23, 2010
This morning I had the house to myself. The girls were in NJ on a scouting excursion. The boys had made a jaunt up to HarCo to clean the cabin and maybe hike/swim.
I had been waiting for this opportunity for quite a while. Total solitude for a decent amount of time. I took some deep breaths and waged battle against the beast. I found a pair of vice grips, stuck my hands in the belly and removed 3 hose clamps. On the 3rd removal I found the clog. I shed some blood on some sharp edges, but the clog was removed. A sock, a mongo ball of lint, a bunch of coins and a straight pin were removed from a lint trap shown in the picture above.
I persevered through the difficulty of reinstalling the stinking hose clamps and ran a test rinse/drain cycle. Water shot out. The fact that this lint trap requires blood to be cleared shows a supremely stupid design, but it's been cleared. Huzzah!
It might be a sign of hubris, but I declare victory.
Monday, May 17, 2010
Ok, I'm no longer mad, but how about annoyed?
I'm relatively new to being a high school parent (eldest is a sophomore) and I was willing to chalk-up last year's HSA confusion to a freshman who was disorganized. But this year that's not the case.
So on Saturday, before leaving to get out of the city for a little non-wired R&R I asked my high school student what her schedule for HSA week was and if it was like last year, i.e. show up for one morning (one test) and the rest off the week you got to stay home. "Ummm....I know we have HSA's but I'm not sure...ummm." I asked if she had a flyer with the information. No flyer. OK, I went to check out the website. No information beyond what was published on the City School calendar at the start of the year. Desperate calls and facebook pleas and it turns out HSAs are in the morning this year and you're expected to go to school in the afternoon. Can everyone say "transportation logistics nightmare"? And you take two HSAs sophomore year. Suddenly, the week I had thought would be relaxed just turned into a mess.
Whatever. We'll cope.
Here's my root cause problem analysis. If you want involved parents, you might actually have some sort of way to communicate with them.
Sunday, May 16, 2010
Saturday, May 15, 2010
Monday, May 10, 2010
I guess the easiest answer would be to blow off ESY and schedule our summer without it. The problem is, msk needs the additional academics. He's a smart kid, but being in an autism specific program that focused on behavioral issues for 2 years basically put him 2 years behind academically. I think that he makes close to a year's progress every year, that's not going to get him caught up. Repeating a year would be a disaster socially, given the friendships that he's made and the fact that he's not a little kid anymore. He would really stick out in a grade with kids younger than him. Even though ESY isn't about academic catch-up, it seems important to keep him academically challenged. Plus, msk really liked ESY last summer. So, we are planning on doing ESY again this summer.
I really, really, really want this summer to be a good one for msk. Beyond academics, he's a very physical guy and would do well in a situation with lots of running and hiking and swimming and the like. For his safety he needs an aide to be with him in these situations. Because of the unknown date of ESY we haven't been able to find an aide for him that's up for physically challenging activities. Without an aide lined up, it's hard to find a summer camp that would be willing to accommodate an autistic kid and his aide. A creative aide could try to schedule physical activities on his own, but that would mean that there is little socializing with peers going on.
Honestly, just thinking about it makes me anxious. Without structure, msk is not a happy kid. My two neurotypicals have 4 weeks of sleep-away type camp booked for the summer. That means there are four weeks when msk won't even have siblings to interact with. Without some good activities going on this could be bad. Very bad.
Maybe it'll all fall into place, but it makes me worried. When are the letters about ESY going to get sent out?
Thursday, April 22, 2010
Now, onto the discussion.
I feel like I'm not exactly clueless on education, but I had no idea what the "Reauthorization of the Elementary and Secondary Education Act" was. It was only a few google search clicks away to find this and this. I don't mind doing a little digging and all, but you'd get more takers on the invite if there was a little bit of an explanation, like "the Obama administration's take on the federal government's role in education and revisions to the No Child Left Behind Act."
As a parent of a special needs student, I've been none too impressed with Mr. Duncan. There have been a lot of other issues to get through on the president's plate, though, so I'm trying to remain optimistic. I'm hoping that this meeting will outline some vision and generate some discussion to keep me optimistic. I'm not sure how much useful discussion there will be in this setting, and a "roundtable" discussion with 200 people seems pretty unmanageable to me. Plus, I wouldn't mind an agenda. But those are quibbles.
Regardless, someone from this household will be there. Given the eleven years we've invested in City Schools and the seven to ten that we've still got to go, we'll be there.
April 22, 2010
Dear City Schools Colleagues, Staff, Partners and Friends,
The Baltimore City Board of School Commissioners and the CEO of Baltimore City Public Schools invite you to a Roundtable Discussion on the Reauthorization of the Elementary and Secondary Education Act and what it means for City Schools. The discussion will take place this coming Monday, April 26, 2010, 3-5 p.m., in the auditorium at the Reginald F. Lewis Museum of Maryland African American History and Culture at 830 East Pratt Street, Baltimore MD 21202.
A reception will immediately follow the discussion.City Schools’ leadership will be joined at this important event by:
- Michael Casserly, Executive Director of the Council of the Great City Schools
- Gary Huggins, Executive Director of the Aspen Institute's Commission on No Child Left Behind
- Charmaine Mercer, Senior Education Policy Advisor for the House Committee on Education and Labor
Parking is available directly across the street on the corner of Pratt and President Streets at the Dodge PMI Little Italy Garage (815 E. Pratt Street).
Thank you. And I hope to see you there.
Andrés A. Alonso, Ed.D.CEO, Baltimore City Public Schools
Saturday, April 10, 2010
So the weight loss program at work had a three part homework assignment for this weekend. I'm posting part one - Saturday morning - here:
Why I’m committed to a healthier lifestyle and loosing weight:
I know that I am a strong person, but carrying around all this extra weight is going to soon take its toll. It might be knee problems, high blood pressure or something else, but given how heavy I am something is going to give. I really need to be healthy and able for the long term for my own goals and for my responsibilities.
Another thing I know is that the majority of my weight gains periods have had to do with stress and frustration. I know that I have choices in dealing with stress and I choose to meet it head on with a joyful attitude. I know that this requires conscious effort, but really – what’s the point of being alive if you are not consciously involved in life? I know that if I see my weight is in an unhealthy place and I am not moving towards a healthier weight I am eating out of stress.
What I’ve gained so far in my effort:
- I am empowered – I know I can loose weight and I know what does and doesn’t work
- I feel a big mood boost when I am successful – this morning my total loss is >16 lbs and this week is going to be back on track for a weekly loss of 1 – 2 lbs. I’m really happy about that
- I’m starting to fit better in some clothes and it won’t be long before I can get some summer shorts that are a size down from the ones that were tight last summer.
- I’m looking for ways to fit exercise in my life and because of that in my kids’ lives. I think this will keep them on a healthier path than I have been on
Conclusions & re-commitment:
I hit a plateau a few weeks ago during a period of stress. I’m happy that I didn’t gain back the weight I had lost, but I did get stuck for the better part of a month. The weather is nice and even though the workload isn’t going down I know that I can find time every day to exercise and every night I can find other things to do besides eat to de-stress. I’m on a good path and it’s a long term change I’m committed to, not just hitting a specific weight or BMI.
Tuesday, April 6, 2010
So the instruction from @shannonrosa was to "Tweet it loud, blog it proud: I love my child with autism" and that's exactly what I'm doing.
Friday, April 2, 2010
At this point isn't everyone aware of autism? Awareness is such a vague word, with such a low criteria. If you've watched Rainman or Mercury Rising aren't you aware of autism? If you've heard something, but haven't followed court cases and you think that vaccines cause autism I guess you are aware of autism. I can't speak for more than the people I come in contact with, but I think amongst them, autism awareness is a done deal.
That's not to say outreach and communication isn't required - it's just that we need to move forward. Here's my list of goals in order of difficulty.
Beyond rumors and feelings about autism, we need some real understanding and education. Some high points for me are:
- Basic facts need to be spread - typical traits that help others distinguish autism from "spoiled" kids would prevent many hurt feelings. Witness the whole SmockityFrocks debacle.
- The diversity of autism needs to be communicated - if you base your understanding of autism on a single individual you need to know that autistics can be all over the map: Verbal, non-verbal or limited speech; Frustrated or joyful; Social or reclusive. You get the point.
- When we talk about autism we need to make it clear that it is not a death sentence - Autistics can live long rich lives. They may need support through that lifetime, but that doesn't mean they or their parents need to be pitied.
Along with the understanding and knowledge, how about instilling some empathy? Autistics and their caretakers may seem different than you, but they have feelings. Put yourself in their shoes for a few minutes. Try to understand a sensory overload meltdown or frustration with being unable to communicate effectively. How would you feel if you were forced into isolation because you didn't seem normal enough?
Once you see the humanity of people with autism it should be clear that they, like lots of "different" people will enrich society if we can make a place for them. Neurotypical kids grow through interactions with autistic kids. Strengths, for example msk's mind-blowing artwork, need to be celebrated. Providing accessibility to people with sensory sensitivities is as important as ramps for people in wheelchairs.
This is the pinnacle in my mind and a point that we must reach sooner rather than later. msk needs to be seen as a member of society with all the rights that entails. Discrimination and exclusion are not just morally wrong; we need them to be recognized as illegal. The law needs to have teeth and be taken seriously. There are too many stories of pain, suffering and even death. We need to be understanding of other viewpoints, but my kid can't afford complacency in the face of injustice.
Monday, March 29, 2010
Over the weekend the usual family activities didn't bring me the normal enjoyment. On Sunday's walk in the park I found myself rushing msk instead of giving him the freedom that has made park time so wonderful for him. I worried about him climbing a tree. I didn't feel like scrambling up and down steep hills. I talked in a fairly unpleasant tone. Generally, I sulked.
Today at work I was just as grumpy. I had a bit of a meltdown over an email. Generally I acted like a jerk.
This is unacceptable and having now recognized my bad behavior I choose to stop it.
So in an attempt to turn it around I'll follow that Ian Dury & The Blockhead tune and list reasons to be cheerful:
- I got a phone call from my traveling kid and she seemed very happy
- Next year I'll have 2 kids at the same school
- Looks like the middle school selection process is over via a lottery win
- It should be beautiful by the end of the week & I think I've earned some time off
- A challenging job is way better than a boring job
- The DSL that was out due to rain is back up now
Saturday, March 27, 2010
A grandmother was in a library with a child who seemed almost certainly autistic. The child was waiting for computer time and could not do so quietly and patiently. The grandmother seemed uncomfortable with this situation but did nothing to stop the child's talking and asking the current computer users (the bloggers children) if they were done. This story was portrayed with great disgust for the child and the grandmother. They were incompetent and rude and not civil at all. No words of help or encouragement were offered, just silence and a seething snarkiness that was fully explained in the post. The first 22 comments (and many more later on) were all on the order of "Yeah, what jerks, and you are the greatest for not saying anything to them, but we've all been there and despise those types of people." At comment 23 someone suggested that the kid seemed autistic. There was not a lot of compassion shown at that point, but quite a bit of defensiveness.
Reading the post and all the comments made me feel awful. I have been that hapless caretaker and I have felt those unspoken words of contempt.
Guess how long it's been since msk has gone to our public library? Close to a year, but our last visit is still very clear in my mind. We were waiting in line to talk to the librarian about the summer reading program and it was too much for him - lots of echolalic speech and running around the library and frustration that would have been screaming, if not a full-blown meltdown, if I had tried to get him to quietly wait. Eventually we made it to the librarian to be met with distrust. Why, if he had really read the books we recorded, couldn't he answer questions about the books? Looks from around the library, but especially from the librarian made me feel totally un-welcome. That was it for me and msk at that library.
Since then I've rationalized about it: We have plenty of books at home for msk to read. Who needs a stupid T-shirt anyway? Who am I trying to impress with the idea that my very significantly autistic child can read quite well? The hours of this library are always shrinking and computer use by teens seems to be the only usage on the rise.
So no, we don't go there anymore. I used to give donations to the library foundation - that doesn't happen anymore. Sometimes I wonder if I imagined the bad feeling coming from others in the library towards msk and me and my parenting. Smockity's blog post helped me understand that vast numbers of parents are judging us where ever we go. Thanks ever so much.
I know that practice and exposure are what msk needs to be successful in social situations. I know that the world needs to see more of msk and kids like him to gain an understanding of autism. Sadly I can't turn off my discomfort when people shake their heads at us or stare. And msk can't stop picking up on my discomfort and becoming more and more wound up in these situations.
There are a very few outings we do regularly - weekly grocery shopping, the post ice hockey Farm Store stop, in nice weather the playground - and lately I've been trying to take him for quick errands to pick up a pizza or run for milk to the 7-11. If I can keep it low key and ignore the odd look at his rather loud echolalic speech, these go well enough. I feel like we need to do more. Given my gained insight into what people our thinking about us, I'm not sure the gain outweighs the stress.
Sorry that this post is so negative. I just can't summon the energy to put a postive spin on this. Sure, there are supportive people out there, but at this point the negative vibes are just too overwhelming.
For a listing of other aut-rent's take on this post you can go here or here.
Sunday, March 21, 2010
The hockey rink didn't feel so cold. msk scored two goals in a drill with an actual goalie. I think he's got pretty decent puck control. I'm not sure about how he'll do when people try to take the puck from him, but maybe that's next season's skill to learn. I think I saw him picking up his left foot while he was skating, even though nobody said anything to him. Add on the good spirit amongst parents for spring and the upcoming tournament and new uniforms and progress made. It was a wonderful practice.
Then as I sat through the last round of the math tournament I was blown away by how sharp these kids are. Maybe America's schools are failing kids in terms of STEM (Science Technology Engineering Math), but for at least 160 Maryland middle schoolers there's a lot of real math knowledge being passed on. Maybe MSS didn't get a trophy, but the team was uniformly strong, ranking at #9. I eventually gave up on trying to solve the problems and just enjoyed myself.
There was enough time for a park visit with msk before dinner so off we went with the dog happily sniffing the path that we haven't been on for months. The wild flowers were greening up nicely with the first blooming celandines glistening yellow. I was happy to soak up some sun while msk enjoyed playing in the stream, first walking on stones, but eventually getting soaked in the icy water. We went home for a warm shower.
A quick stop on the way home from the math tournament had garnered grilling meat with MSS picking her favorites after doing so well. That lead to a wonderful dinner, the first on the deck this year. Thee smell of charcoal and the sound of neighbor kids playing in the background topped it off.
The first day of spring. No complaints.
Wednesday, March 17, 2010
What is come down to, though, is a legal right to be educated in the least restrictive restrictive setting that is appropriate for them. Msk has been successful in an LRE A setting for the last two years. He has been less successful in an LRE F setting previously and before that in an LRE C setting.
First, here's some vocabulary to help explain what all these levels mean:
- LRE level A -out of general education classroom < 21%
- LRE level B -out of general education classroom 21% - 60% of the day
- LRE level C -out of general education classroom >60% of the day
- LRE level F&G -separate public and private schools
So, besides being a legal right, why do I think that inclusion is the way to educate special need students?
- The first and most obvious reason is that we no longer live in a society where people are instiutionalized. Eventually, to whatever level they can, these students will need to live in society and they need to be working on that skill as early as they can.
- General ed students need to learn that there are lots of different people, some with some pretty major problems, but that we're all humans and we can live together
- When teachers learn to differentiate education for one child they learn that it's not thaat hard to do and that many students without IEPs can benefit from a tailored lesson
- A lot of learning in schools is peer to peer. A diversity of peers makes for the richest learning environment
I know different kids have different needs, but I think many special needs students are in more restrictive settings than is really required. The biggest driver is that all parties need to want inclusion to work. It's that desire for working with msk and seeing him as adding to their school that I'll be looking for in meetings with schools.
Monday, March 15, 2010
I've spent six + years as a parent of a Special Ed student in City Schools. I can say without hesitation that services and organization have gotten better in those years. If the point of the Vaughn G Consent Decree was punishment for being disorganized and removal of the Consent Decree is a reward for no longer losing track of services and students, I can agree with the current turn of events.
As a parent of a special needs student, I have slightly higher standards. I'm shooting for a Free Appropriate Public Education (FAPE) in the Least Restrictive Environment (LRE). When that's happening for every special needs student in City Schools I think some sort of victory can be declared.
Who can honestly say that all students in City Schools have an "appropriate" education? I think violence in the school makes it impossible for anyone to have an appropriate education, much less special needs kids who are the most likely to be harassed in school (there's a good government bulletin on the subject here). And when schools are lacking the supplies and staff that they need to educate their students, is it possible to get an "appropriate" education? I know that these things aren't true for all schools or students in City Schools, but I think that for special needs students, especially those without strong advocates, violence, lack of resources and lack of trained staff is more the rule than the exception.
Without properly trained staff it's impossible to put a student in the Least Restrictive Environment that he/she is able to be successful in. School staff needs the time and training to adapt an environment. Supports need to be designed and purchased. This can't happen in a school that is chronically under-funded. When special needs students are put into the general population all of the teachers, staff and students need training to understand these students. It's understandable for an over-burdened teacher to resent this new demand on their workload, but what student can be successful when their teacher resents their presence? If their fellow students don't understand the special needs student the environment will naturally turn hostile and who can learn in that setting? In these cases the special needs student is being cheated of an education. In the end, if the student has someone standing up for them, inclusion is deemed as a failure and a more restrictive environment is where they end up.
So while I applaud the hard work that has moved City Schools this far, I'm not ready to declare victory.
Sunday, March 14, 2010
Wednesday, February 24, 2010
The majority of standalone middle schools are places of violence with little learning going on. If you are a bright kid who can blend into the culture of the school (i.e. you are the right race, you talk the right way, you wear the right clothes etc) you can make it out of some of these schools intact and having learned what you need to learn to be successful in high school.
Alternately there are middle schools with entrance requirements where most of the kids come out prepared for high school, but these are only an option for kids who test well and with a limited number of seats there will be kids who are bright enough who will be turned away.
There are charter schools who have varying levels of success at bucking the trend of middle schools, but these typically have lotteries with a 1 in 10 chance of acceptance. When that's not the case these charters are either having safety or academic problems that are in line with the neighborhood middle schools.
Add into this mix a kid who takes the Alt-MSA, who needs acceptance from his peers to grow behaviorally, who is never going to look or act like a "normal" kid, and who needs teachers who are willing to modify his work to accommodate his disability. A kid who in situations of chaos can wander and really has no survival skills if he gets lost.
This is why I plead for a continuation of elementary school.
Tuesday, February 23, 2010
Changes (for some amount of anonymity) shown in italics
I would like to address the board about expanding the unnamed charter school to x grade. Our son msk would be attending x grade at the unnamed charter school if this expansion were allowed.
My husband and I are supportive parents of 3 City School students. For the last 11.5 years we have always been involved parents – my husband is on a school’s SFC, we are PTA members and we always participate in fundraisers.
Prior to msk entering school he was diagnosed as being autistic. Even though many people urged us to move to the county we were committed to City Schools. My husband and I are City School graduates; our elder children were doing well; but mainly we stayed because we believe in the economic & cultural diversity that City Schools provide.
Msk's initial City School experience was with a school that was supposed to be inclusive (it had a “Together at 5” program) - but clearly msk wasn’t valued. He was often off task, he was frustrated, and his teachers resented the extra work he represented and saw no plus side to him being there. We worried a lot about msk in this setting.
In the summer we attended a PAL program for only a few days – this was clearly the wrong setting for msk with lower functioning children his developed new problem behaviors and there was no academic work at his level.
Eventually we moved to a non-public placement that cost the city money, but worse (from our perspective) - msk was away from “typical” kids. This meant his behavior stagnated and academically he made very little progress in two years.
The unnamed charter school offered a unique setting where we felt msk would be safe and valued and we made an unprecedented move from a LRE Level F school to a Level A school. We did this because the unnamed charter school had a special educator as principal who wanted msk to be there and because differentiated education was seen as standard practice. In this setting msk has made great progress – behaviorally, academically and he’s just very happy at this school. This is the only setting since pre-school where we can say this.
If the application for a x grade is denied I don’t know where to consider sending msk next year. Honestly, I’ve been worried about this transistion since msk first entered the unnamed charter school . I see no alternative to pursuing a non-public placement again. I would love to hear what school the board recommends we pursue for msk next year. We’re looking for a school that:
- Has teachers and administrators who value special need students
- Would not put msk in a isolated special ed classroom
- Would provide differentiated instructional material
- Would include msk in all school related activities
- Would provide the one-on-one aide he needs and not use the paraprofessional for other purposes than his education
- Would not tolerate bullying or exclusion towards msk from his classmates
I think these are all fair requirements for a Free and Appropriate Public Education in the Least Restrictive setting that is his right by law. Is there another City School that could provide these things for msk?
Saturday, February 20, 2010
Let me clarify to the extent I can - msk is currently at a school where he's doing very well and we are happy.
So, City School activities continue but, at the moment, I'm not sure about sharing.
Friday, February 12, 2010
My weight/exercise/health resolution has been going better, and I've got to say it seems like a more important resolution. On to specifics. Copying my goals from last week's post:
- Drink coffee black - Third week in, still 100% compliance
- Weigh in everyday - Third week in, still 100% compliance, logging in to iPod & Nutrisum
- Pick low fat when grocery shopping (lean meats, less cream/cheese based dishes) - Still100% compliance meals are much healthier
- 30min exercise at work every day - not quite 100% with all this stinking snow and the days I worked from home. Strangely it's very hard to take breaks from work when I'm working at home. Might be related to the 3 kids home from school because of the snow.
- Follow the Wii Active 30 day challenge - Another bit of a slippage although I have been getting some exercise from shoveling snow off the deck. Next week I'll do better.
- Track and work on the following 5 points - tracking every day
a. Three servings of whole grains - a little hard, 90%
b. Five servings of vegetables and fruits - every day 100%
c.Five glasses of water - every day 100%
d. No snacks within 2 or 3 hours of bed - hardest, about 75%
e. Breakfast within 2 hours of waking up - every day 100%
And the results... well, we're talking about a lifestyle change. That will take more than 3 weeks.
Saturday, February 6, 2010
- Drink coffee black - Second week in, still 100% compliance
- Weigh in everyday - Second week in, still 100% compliance, purchased 2 iPod apps to help keep track Lose it! and Weightbot. Being a geek, apps are great motivators for me
- Pick low fat when grocery shopping (lean meats, less cream/cheese based dishes) - Still100% compliance meals are much healthier
- Walk more often - still 100% lunch time walks at work except one day where I used the elliptical machine, so I'll rename this 30min exercise at work every day
- Follow the Wii Active 30 day challenge - I've skipped 2 days, but plan on making them up over this snowed in weekend.
My new goal is to start tracking my diet with Nutrisum, a program that my company provides. It seems simple enough - you can get up to 5 points a day with a goal of 30 points per week. The points are:
- Three servings of whole grains
- Five servings of vegetables and fruits
- Five glasses of water
- No snacks within 2 or 3 hours of bed
- Breakfast within 2 hours of waking up
Saturday, January 30, 2010
I've figured out that if you undo the entire buffer of keystrokes that Word saves and then repeatedly hit redo you can recreate what he's been typing. I have no idea how long this took him or how much additional work was lost as the buffer hit it's limit. Here's a video of me playing back his typing.
There are only a few hints that I can give to help understand. I'm pretty sure tooch and tootch are his idea of the sound a train makes. He has a talking train (Toots) that goes to the station among other places. He's been watching PBS kid shows on You Tube lately, including Timothy Goes to School.
I'm nearly certain that he has never seen transcriptions of any of this and so his capability for audio capture coupled with his spelling skills lets him type this. His verbal capability for original thoughts (i.e. non-echolallic speech) is very simple sentences and more likely single words and always very concrete concepts - no feelings or the like.
He always fascinates me.
Friday, January 29, 2010
On this post I gave some resolutions that I was shooting for. I know it's only been a week, but sometime you have to celebrate small victories:
1. Drink coffee black - One week in, 100% compliance
2. Weigh in everyday - One week in, 100% compliance, downward trend
3. Pick low fat when grocery shopping (lean meats, less cream/cheese based dishes) - 100% compliance and concurrence with the chef of the house, leading to a week's worth of healthier dinners
4. Walk the dog more often - Not so good with the dog, but 100% lunch time walks at work this week
enough success with those that I'm adding a new goal
5. Follow the Wii Active 30 day challenge - I haven't skipped a day from the schedule even with sore muscles and chaotic evenings.I'll call that success for week one. On to week two.
Wednesday, January 27, 2010
On the other hand, my legs are killing me and I'd really like a break. Management bought me lunch today and I was tempted to get the big fatty menu choice. I didn't do it. The last time I looked a the scale there was no astounding weight loss. Not an easy path.
Regardless, I'm committed to making 30 days being good.