He’s Excited. I’m Scared.

We got The Boy’s schedule finally, and it was slightly different than expected, with no core class second semester and a passel of scary-sounding electives like “Principles of Business & Finance.” I emailed his new teacher with my concerns, and she said those are the career and technical education courses they take as part of the Occupational Course of Study, and that the special ed teachers work closely with those teachers to make sure everything is modified. Seniors get first pick, so there’s not much left for freshman when they schedule them.

Ok. But if you have a 9th grader who still can’t multiply and divide independently?

And the lack of core classes was due to the only male PE class being offered at the same time during second semester, and he can just take Biology when it’s offered again, either sophomore or junior year.

I look at this schedule with these long-titled classes that last an hour and a half, and I know there will be no parapro, and I start to get a little queasy with all the what-ifs racing through my brain.IMG_5643

My constant refrain seems to be “How does this work?” And I have to let go. I have to trust that it will be fine. I have to give this new set of teachers a chance to prove they know what they are doing and that they are professionals.

And while I do that, I am preparing my own “curriculum” of supplementary stuff to help him find some meaning in his day, just in case “Sports & Entertainment Marketing” isn’t quite up his alley. Like maybe a coding workshop, and some time spent feeding some animals at the wildlife shelter.

“Thinking will not overcome fear but action will.” ~ W. Clement Stone

There’s Hope Here

I spoke with the band director about band camp next week. Originally, he had said he wanted The Boy there, which would mean a 12 hour day and missing the last week of Summer Day Camp. The Boy put the kibosh on that, but agreed to go after day camp. I asked him if he understood that meant a change in his routine – he would have no time at Grammy’s for the week, and would add an additional three hours to an already long day. He assured me twice that he could handle it.

When I spoke with the band director, I told him the schedule The Boy would follow, and he seemed to understand. I asked him about a few logistical details, and if there would be an upperclassman or someone who could help The Boy keep track of what he is supposed to do. He responded with the name of an adult supervisor who had helped The Boy’s friend last year, and would be very helpful to The Boy – he had already made arrangements for this, which impressed me.

Finally, I asked if it would be helpful for me to come in and talk to the kids about autism, and at first he said that the kids already had some experience with The Boy’s friend. I responded that The Boy is a different kid, and that we sometimes expect kids to know how to react when they really have no frame of reference. He really liked the idea, suggesting I come in after the school year has started.

So I have renewed hope for this enterprise. The band director seems much more open than the directors we’ve previously encountered. He has some learning to do, clearly (Rule #1 of autism: If you’ve met one kid with autism, you’ve met one kid with autism), but seems to know there’s room to grow there.

I just texted my friend, mom to The Boy’s friend and his twin brother who will be in their second year of marching band this year, asking if they would save him a spot at dinner, which is just about the time The Boy will arrive to band camp each day. She said The Boy’s friend and his brother have already indicated that they plan to “look after him,” which warms my heart and gives me even more hope. Maybe this will work our after all…

 

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P.S. The ex actually sent me a check to pay for band camp… Will wonders never cease!

Inclusion Starts with “Hello!”

Thursday night, The Boy and I ventured to one of the marching band rehearsals from which he has been excused, due to logistics and conflicts with summer day camp. We wanted to just stop in and possibly say hi, meet some people, help with the transition. I made arrangements to leave work early so I could pick him up and get him there before it was over. We arrived and discovered the brass section in the band room. I told The Boy we would wait until they were on break to enter, so as not to disturb them. After waiting for a good bit with no break, he wanted to find the woodwind section to see how many of his friends from last year were in attendance.

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He loves it so much..

We found them in the library and were welcomed in by the band director. We sat and listened for a bit, and decided to head back to see if the brass were on break. They were, so we walked in, and The Boy’s middle school director was at the front of the room. I can’t quite describe the look he gave us when we walked in, but it was not pleasant. He didn’t say anything – not, “Hello,” not “Hey,” – nothing. No welcome, and no introduction for The Boy to this room full of kids who didn’t know who he was, save for a few. The Boy, oblivious, walked over to one of his friends and gave her a hug as she sat, and then I suggested we leave again, as our presence certainly did not seem to be welcome. We went back to the library and the woodwinds were being released back to the band room for a full rehearsal. The high school band director greeted The Boy again, and The Boy talked his ear off the whole way back to the band room. We listened for a bit to the full band play, and suggested again that we leave before everyone was released, and The Boy agreed.

He may be oblivious, but I am not.

While thankful the high school band director at least had the sense to appear welcoming, I’m sad that none of the high school students had the wherewithal to introduce themselves to The Boy. I’m disappointed that not one of the three drum majors, students in high levels of leadership, recognized their duty to welcome a member, albeit a non-traditional one. I’m livid that a professional educator who taught my son for two years cannot even greet him, and would go out of his way to make him feel unwelcome.

And right now I’m at a loss. I knew this wasn’t a terribly inclusive group to begin with, based on The Boy’s friend’s experience last year, who is also on the spectrum, and lacked a single friend in the group even at the end of the season. I knew I wouldn’t gain any friends by forcing our way into the group, even with the weight of the law and human decency behind us. But I have not been so uncomfortable, and made to feel so incredibly unwelcome since I encountered mean girls in my own middle school experience. It was that palpable. Do I try to educate and advocate? Do I engage outside help either from school administration, the autism society, or the state band directors association?

Or do I give up?

Is this really worth it?

I don’t know. All I know is that this shouldn’t be.

Today is the Day

Today is The Boy’s last day of 8th grade, of middle school, of being anything but a teenager. He’s excited. I’m excited. We’re all excited. And a little wistful, too. Even The Boy exclaims, “How did we get here?” and “How did this happen?” I tell him time flies, and if you blink, you miss it. I tell him all those old cliches, those that have been around so long they must be true. It sure feels that way.

Where is the 5 pound 6 ounce baby I was holding in my arms yesterday?

Where is the toddler who got away from me in the department store and hid in the middle of a clothes rack?

Where is the preschooler who couldn’t wait for the water to warm up to get into the small pool we had bought, and whose smiling lips turned blue?

Where is the 2nd grader who kicked his classmates?

Where is the 4th grader who sang the Star Spangled Banner at the high school football game with his choir?

Where is my 7th grader who began to have crushes on girls?

Who is this extra man in my house who is taller than me, requires shaving at regular intervals, and has hands and feet bigger than his dad’s? Who can barely fit on the couch if he stretches out on it? Who “practices” driving every time we get into the car?

Ah, yes. He’s my son, even though I can’t possibly be old enough for it to be true. My son. And me over here? The one with a bit of dust in her eye? I’m one proud mom.

finding our own path

 

The Two Hour Delay

You might be an autism parent if...The effects of a two hour delay last all day longOur school year has been riddled with two hour delays. And although my recent posts have been fairly centered on my (adverse) reaction to these, they do negatively affect The Boy, as well. As always, if he can expect it, and be prepped for it, the result is mitigated. But if it comes as a surprise, and is combined with other students being absent, teachers being late… It’s not very pretty, and this was the case this past Monday.

I understand why the district does it. They try very hard to avoid cancelling school because there is no such thing as a make up day in the South. They could very easily build in some days, as this is the second year in a row that we have had a dearth of these routine-upsetters, but that would take forethought and planning… and I digress. The problem is that our district encompasses many long miles of coastline, the east end of which is very susceptible to flooding during heavy rains. There is basically one road going in and out of town, and there is one very small school there. But if those sixteen kids can’t go to school, then the rest of the district has to close too. Even if there’s a chance they may not be able to make it, or the wind will be too strong, or there just may be water over the road… I am exaggerating, but only slightly.

The district needs to take a hard look at their policies. Two hour delays may not seem like much, but it only takes three to add up to a full day of instruction lost. Couple that with the detrimental effect on kids like The Boy (and neurotypical parents like me), and we are starting to have a serious problem.

Monday evening, The Boy asked when the next two hour delay would be. That’s not something I can predict, considering the last two were for no apparent reason. At that time, I pulled up my Weather Channel app, which said no chance of rain until next Tuesday. Now, as weather forecasts are wont to do, this Friday looks like rain and a chance of snow in the AM. If that forecast remains, you can bet there will be a delay. And now our job is to prep for that possibility…

Presumption of Competence

Hands down, the biggest lesson I have learned since moving my son to another school, another school district, another state has been that one should never presume competence with anyone who deals with your child.

 Unfortunately, classroom teachers know very little about IEPs and special education law.  It just isn’t required of them in teacher prep programming, and if it is, there’s very little of substance that is taught. Many times, when a teacher is in your child’s IEP meeting, they are following the lead of the special education teacher and the administrators. If they do any modifying of assignments, or make any accommodations for your child, it’s usually under the direction of a special education teacher (and many don’t do it at all, and leave this entirely to the special education teachers and even the TAs). This is not the case with all general education classroom teachers by any means, but if you presume competence about special education matters, you will most likely be unhappily surprised.

The same can be said of administrators. Those that know about special education law are in a shocking minority. I worked for and received a degree in school administration, and only a portion of our one law class covered special education law. Administrators rely heavily on their special education teachers to know the law, as well.

Why is this important? When you head into that IEP room, you are relying on the expertise of one person, your child’s special education teacher, to ensure that what is happening that day is legal, and that you’re child’s rights are being met. And if that person isn’t quite up to snuff? Then what?

It is imperative that you learn about what should be happening in that IEP meeting, in your child’s classrooms, in that whole district. Get your hands on anything from Wrightslaw and read it until you know it. Otherwise, your IEP meeting could be “run” by and administrator who wants to reduce your child’s social skills time, and have the TA take him out into the school to practice unlearned skills because that’s what she thinks should happen. (true story…)

With the proper knowledge behind you, you can respond, “But that’s not how this works. That’s not how any of this works.”

Post-Move Update

If you follow this blog, you know that we sold our house at the end of August and moved into a rental house where we will live while we build another small house that is in The Boy’s “district”.  In order for him to go to high school with all of the friends he’s made since moving south, we need to live in that area, so we have less than a year to make that a reality.

Moving from our former house was bittersweet.  The Man bought that house pretty cheaply because it needed tons of work, and then did all of the work and then some to make it a very nice house, bigger than anything he or I had ever lived in before, and the best part was that it was paid for – no mortgage payment. We were able to remodel it to our tastes, and the fact that it was paid for was what made it possible for The Boy and me to move here. It was our first house as a married couple, as a family, it was where The Man proposed to me… We had lots of really good memories there. It had a beautiful backyard up next to a golf course, so views of gorgeous sunsets, sunrises, and wildlife were common occurrences. The Boy could ride his bike or scooter to his hearts content, and we were glad that he was safe to do that without being bothered.

While our current rental house isn’t exactly as we’d want it, and there is that rent payment hanging over our heads (right at a time when I’m making so much less than I was before), I can’t help but revel in the positives here, as well. I wrote about the tree swing earlier this week, which The Boy adores, and therefore so do I. The lot itself is quite pretty, with well-placed, picturesque trees and lots for the cat to look at during the day.  We are placed directly between two churches, so there are no neighbors to speak of, and we are so much closer to civilization… I can’t tell you how much easier it is over here.  We don’t have to plan our day around a trip to Walmart – it’s now only two minutes away. We are physically not much closer to Grammy and Poppy, but the fact that you don’t have to cross two bridges and miles of two-lane road to get there make quite a difference in the time.  The house itself is the perfect size, just about the same size we intend to build the new house, so it is easy for us to plan and visualize what we’d like to do.

room with a view

The very best thing is that The Boy loves being closer to his grandparents, civilization, and most of all, his school.  The bus used to come pick him up at 6:30am. Now, we have foregone the bus in the morning (alleviating so much stress), and The Man takes him at 7:20am.  That’s quite a difference to a tired teenager.  One that makes him infinitely happier, and he is not afraid to show it. He has adapted beautifully and I’m proud of him and happy for him, too.

While we could have stayed where we were, I’m so glad we decided to take the risk and do this. Onward and upward!

Some Rough Days

The Boy has been having some rough days at school this week.  Lots of talk about people being absent from school, and students who have “left” school and may never come back.  None of it is true, but he has emotional reactions to these “events” and we are left to try to figure out what is at the heart of it. Add that to lots of perseveration on his favorite topics, and anyone can see he’s anxious about something.

His teacher emailed me the other day commenting that he seems to let one small correction bother him, and then add real infractions to ensure he gets “punished” or sent home, or some judgement that seems worthy in his mind.  I let her know that this is a common occurrence at home, as well.  Yesterday, I could tell she was frustrated because her email started with “Another bad morning today…” at 10:07am. Rather than respond, I let it ride. She’s young, and doesn’t seem to have the patience the job requires all the time.  Maybe she just needed to vent. I wanted to remind her of Rule Number 1: Behavior = Communication, but I didn’t.  People don’t like it when you tell them how to do their jobs.

crabby

And sometimes he’s just crabby… Kiddos on the spectrum are allowed to have emotions, too.

I’m not sure what’s going on with The Boy, but he seemed much happier yesterday afternoon than he has been in about a week.  I hope that whatever has triggered this latest round of rough days has resolved itself, but only time will tell.  The Boy and I did talk yesterday evening, and I got the sense that we had turned a corner.

Sometimes we figure it out, and sometimes we let it ride and walk on eggshells for a bit. As our very favorite teacher always used to say, “Tomorrow’s another day.”

Teachers: Please Educate Yourselves about IEPs and the Law

School LawLet me preface this by saying that I know the struggles faced by teachers everyday.  I understand the Sisyphean nature of the job, and that it is almost impossible to stay on top of all of the various responsibilities. When I taught, I quickly learned to prioritize those responsibilities, putting the ones that directly impacted kids at the very top.

Knowing your responsibilities to your special education students, and the legal ramifications if those responsibilities aren’t met should be one of your top priorities.

If you’ve followed Simple. I Just Do for awhile, you know that we encountered teachers at the beginning of The Boy’s 6th grade year who acted as if they had never had an autistic students in their classrooms before.  I had to become “that mom” just to ensure that The Boy was receiving the very basic modifications and accommodations.  Truthfully, his IEP was being violated on a daily basis.  Comments from teachers during that time included:

  • “He refused to take the test, so I gave him a zero”
  • “He doesn’t do any work in my room, so he needs to be in the special ed room during my class”
  • “He should take the test the same day as the rest of the class because we have other lessons that he would miss out on”
  • “If he doesn’t understand something, I don’t know how to help him because he won’t tell me what he doesn’t understand”

I have also found that classroom teachers in this state do not modify assignments themselves, most likely because they do not know how.  Somehow, providing these modifications is the responsibility of the special education teacher.  This was not the case in my training and experience up north.

Here’s the thing.  You, as a teacher, can be sued (and possibly have to pay damages out of your own pocket) for not following the IEP, and claiming ignorance will not be a sufficient defense.  Claiming that the special ed teacher didn’t make the modifications for you will not be a sufficient defense. You are responsible for knowing the law (IDEA and ADA, for starters), and for following it, by providing each student’s appropriate modifications.

This past week, I had to be “that mom” again, and send several emails to remind three different teachers about the modifications The Boy is supposed to be receiving.  In one response, from the band director, he mentioned that he was “willing to let (The Boy) play for” the band festival performance that same week, but that he did “not want him to participate in the sight reading portion.”

The Boy has a right to access the same curriculum as his peers, therefore he has a right to participate in both the band festival and the sight reading portion.  And it is the band director’s responsibility to know that.

5 Tips for Autism Parents for “Dealing with the School”

autism & schoolI’m a latecomer to this.  We were very lucky with The Boy’s elementary school, and his elementary teachers, in particular his ASD teachers who really acted like caseworkers, made sure everything ran as smoothly as possible.  They advocated for the kids with other teachers and with administration, they handled little problems as they came up, they didn’t think the world was ending with every not-so-good day, and thank goodness they were the foundation, the bedrock if you will, of The Boy’s education.

They spoiled us, but they also showed us how it was supposed to be.

When we moved south, I was shocked at how bad a school could handle it’s special education students.  So I fought to get a better placement for The Boy, because I knew it existed, and I knew we would lose him if we didn’t.  And we got it.

Better, but not perfect.  If you follow my blog regularly, you know that even now we have issues with certain teachers who just don’t get it, strange schedule changes that don’t make sense, and administrators all too quick to wash their hands of anything that comes up. In short, I still have to “deal with the school” from time to time, and the following are some of the best strategies I have found over the years for getting what you want from them.

1.  Listen and watch to determine who your allies are.  Before we moved here, I contacted the local autism society who put me in touch with the autism specialist for the county. She was supposed to be this fantastic resource, but I’ve watched her and listened to her, and to this day, I don’t consider her an ally.  She almost prevented The Boy from switching schools, and I’ve seen how she has handled other situations with other parents, and I’m not impressed.  On the other hand, through that placement process, I was impressed with the assistant superintendent for special education – she cut through the bull on the second day of our IEP meeting (with 14 members present), and brought some chart paper to illustrate that this really was a no-brainer, and the best placement was at his current school. If you watch and listen, you can determine who might be a good resource, and someone to turn to when something’s not right.

2.  Never trust anyone 100%.  Unfortunately, you always have to be wary, because in a school setting, people are not always at liberty to say what they really want to say, and sometimes, due to the nature of autism, they will bend the truth about something that happened (or didn’t happen), or not tell you at all.  A friend recently had a conference with two teachers, one of whom was a revered special ed teacher.  The friend and her son walked into the meeting, expecting to meet with cooperative teachers trying to find a solution, and the revered teacher began to yell at the son for disrespecting his mom at home.  My friend was so taken aback, she asked her son to leave the room, and in her words, “if that was supposed to be support for me, it definitely didn’t feel like it!” People are people, and they make mistakes.  They also change, and teachers get tired. It’s a tough lesson to learn, but just because you could depend on someone “on the inside” in the past, doesn’t mean that will always be the case.

3.  Don’t belittle the teachers.  I read on another autism blog’s Facebook page recently something about actual quotes from IEPs she’s been involved in, and it said something like “I am a taxpayer and I pay your salary!”  Ummm, no.  As a former teacher, this is just about the worst and most alienating thing you can say. Many times, teachers’ hands are so bound by mandates and the wishes of the district and administration that they have little to no power, even over what happens in their own classrooms.  Saying things like this ensures that they will not be your allies, and that can turn out really badly, in the end.

4.  Keep a poker face.  It’s ok, and even advisable to play dumb from time to time.  Earlier this year, The Boy got in trouble for making noises when entering his last class, which is supposed to be a social skills class with his autism teacher.  She had decided it was going to be a silent class, and you can imagine how well that went over with The Boy, who understandably feels like he can let loose a little at the end of the day in his little autism community.  And his teacher escalated the situation, making him more and more angry and upset.  She emailed me with a long list of all the things he had done.  Rather than retaliate, and explain to her about autism (as she clearly had forgotten all of her training for that hour), i suggested that The Boy may have needed to *insert any usual autistic reaction here*.  I could have gone off on her, asking her what the hell she was thinking, and didn’t she know that kids on the spectrum stim and make noises, and to make a social skills class a silent period is the definition of stupidity, but I didn’t.  I simply let her know that The Boy may have had a hard time with it.  Don’t tell them how to do their jobs, even if you know better than they do. Play dumb, and remind them that your kid is a kid, and will make mistakes from time to time.  Together we have to teach them what’s appropriate sometimes.

5.  Pick your battles.  Most autism parents are very familiar with this, but realizing school is not the be-all, end-all was a big a-ha moment for me.  I don’t care so much about grades, because they are based on a standardized norm, and my kid is not standardized, and definitely not the norm.  I care if he learns the content more, but again, our home life is more important than the Types of Energy and the Pharaohs of Egypt.  I have given up on the science teacher this year, who rather than modify assignments, is choosing to give my child grades based on effort.  I can’t teach him science, so I guess he just won’t get much out of the class this year.  Disappointing, but not the end of the world.  The teachers (even the autism teacher) are still giving us only a day’s notice about tests and quizzes, so when that happens, we do what we can but I don’t stress. He usually does pretty well, and what do tests show, anyway? Sometimes you bang your head on a brick wall until you realize it hurts, and then you move on.

Some of these tips seem contradictory, but they aren’t.  They’ve all helped me navigate for better resources and understanding for The Boy, and I hope you can use them too.  Do you have any tips of your own?  Share them in the comments, please!

Shared on amamasstory.com – visit her Mama Moments Monday Link-up!