Communication Skills

Today’s timeline:

10:32 AM – I get an email from The Boy which seems to indicate that A) someone told him drivers’ ed is not available for him – unsure if they told him “never” or “not right now,” and B) someone told him that he can’t hug girls – an ongoing issue that the school has admitted they have no idea how to handle. Two negative interactions with authority figures, and he is upset.

11:18 AM – The Boy’s Business teacher emails me and the special ed teacher to say he had arrived 15 minutes late – an ongoing issue that I don’t believe has even been addressed, other than to mark him absent (?) – and also that The Boy sat down and began to “color.” When asked to put it away, he got angry and left class. (Why they insist on saying “color” and “coloring” as if he’s a toddler, I don’t understand. It’s super dismissive. He is drawing, but I digress.)

11:27 AM – The Boy’s special ed teacher responds, asking if he returned to class because he had brought his “coloring” stuff back to her room and left again.

12:09 PM – I respond asking someone to update me, and if my son is ok.

It is now 12:35, and no one has responded to me.

If he had an aide, like he had in middle school, the aide would have known he needed to decompress upon entering Business class, and explained to the teacher to let it go this time (and indeed, would have made sure he was on time to class). If he had an aide, she might have been able to help him regulate his emotions so he could stay in class. If he had an aide, they would no where my child was. If he had an aide, maybe she could respond to me to let me know my son is safe and sound.

Three weeks ago, something similar happened when he got upset upon boarding a bus for a field trip and noticing the girl he has an interest in was absent. I received emails from him saying he got left behind, that he couldn’t find his special ed teacher, yet no email or notification from the school. When I called, the secretary kept trying to put me through to the special ed teacher’s room, and there was no one there. Finally, I sent my mom over to find out if they even knew where my son was. He had started walking toward the highway, and the new assistant principal (who kept advocating for him to just go home with my mom) didn’t alert anyone that she had him. The principal and the police liaison got in a car to go find him… After my mom arrived, SHE called me to update me, and it wasn’t until much later that the principal called to tell me what had happened.

I shouldn’t have to wonder about my son’s whereabouts and safety. I shouldn’t have to contemplate a $500 monitoring system like AngelSense because school personnel can’t be bothered to let me know what’s going on.

I think The Boy is much better communicating, at this point, than school personnel. When/if they get back to me to let me know my son is safe, I’ll be requesting a meeting, ASAP. This is beyond the pale.

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Battle over Band

In a week, I’ll meet with the high school band director and the high school special education teacher, and hopefully walk away with a plan for The Boy to be able to continue participating in band.

If you recall, after missing a meeting with me, the band director told me at orientation that he didn’t think The Boy should be in marching band, but there was a possibility that concert band in the spring could work out for him.

When I mentioned this to the Director of Special Ed for the district, a phone call was made to the high school principal to discuss it, apparently. Why? Because it is against the law to deny a special education student access to curricular, extra-curricular or co-curricular programs.  Which law? IDEA is pretty explicit, and in fact, if The Boy wanted to, he should be afforded all supports for the extra- and/or co-curricular programs that he is afforded in his regular classes (i.e. if he has an aide in class, then he should have an aide on the field in marching band, helping him learn his drill).

In fact, marching bands across the country have embraced their roll as an opportunity for students with disabilities. Kids with autism, kids with CP, kids in wheelchairs, and there is even an entire drum corps made up of kids with special needs.

Yet, this guy thinks he can tell my kid no. Or rather, he thought he could until I squeaked.

Now, will The Boy be up for all of the summer, evening, and weekend rehearsals that often entail grueling hours in the sun? Probably not. Will he be able to learn an entire drill and carry a sousaphone that whole time? Probably not. But there has to be a place for kids like mine, and if there isn’t one, we’ll create it.

You can’t just say no, sorryboutchya. And why would you?

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He Melted

Last Sunday, I found a flyer in The Boy’s backpack that said he had a performance this past Thursday, at the orientation for incoming 6th graders. I was a little annoyed at the lack of advance notice, but we rolled with it. I made sure his band shirt was clean, cancelled my Thursday lesson, and made arrangements for transporting his tuba.

Thursday evening came, and I picked The Boy up at Grammy’s. We rode out to his school, and I reminded him that it was ok if he didn’t see all of his friends after the concert (which has been a big source of anxiety and mini-meltdowns in the parking lot after events like this all year). He was anxious about it, but at least we were talking about it. When we got to the school, there were curiously no parking spots, so we parked a ways away, and headed toward the gym. As we got closer, I could hear drums, and I knew we were in trouble. Sure enough, we walked in, and his band was already playing. We waited for the song to be over, and I tried to get him set up behind the band, in the percussion section, quickly so that he could play along with at least the next song. He wasn’t having it, and knocked his binder to the floor. He was angry and feeling left out, and rightfully so. “I missed it! They played without me!” I told him I must have read the flyer wrong, and asked if he wanted to leave.

After the performance, the principal released the 5th grade families to tour the building on their own, and The Boy just lost it. He began walking quickly, shoving people out of his way, giving me the finger, saying he was going to throw his tuba at his band director and cut off his head. I could do nothing but follow and apologize to the people he was shoving out of the way. Apparently, at one point I got too close, because he grabbed me by the neck and shoved me against some bleachers, knocking my glasses off. I picked them up and continued after him. After much walking around the school, and a few hugs from band friends he saw, we headed back to the gym, where he did pick up his tuba and threw it across the gym floor towards his teacher, who was speaking with a woman at the time, and it hit her in the ankles. Again I apologized, and attempted to get The Boy to sit. He did, and the band director approached, hoping to assist me in calming him down. At this point, he revealed that it was, indeed, his fault. That the time had changed and he had announced it in class, but failed to let me know.

The Boy was still agitated, and got up to leave the gym again. But this time, it was for the parking lot. He was calming, and we were heading to the car. I had called The Man at some point for help, and he was on his way, although I’m not sure what kind of help I was looking for. I began to cry. The Boy asked why, and I said, “Because I hate to see you this way.”

We ended up leaving his tuba and music there – let them deal with it for now, and headed home where it took about an hour for The Boy to calm down. By then, he was ready for pizza, and even played my trumpet a bit.

This didn’t have to happen. I’ve told school personnel, including the band director for multiple years that The Boy cannot reiterate to me what is said at school. Apparently saying it ad infinitum is not sufficient. But the band director learned from this. He apologized three times that night (and not once did I say it was “ok”), and called on Friday to express his apology again. I can forgive a young teacher who knows he messed up big time, if it looks like he learned from it. I cannot forgive the principal and assistant principal who initiated the change, made no accommodation for affected students (how many robocalls do I get from the school per week, and this wasn’t on any of them?), and didn’t lift a finger to do a thing on Thursday night. In any school, the buck stops with the principal, and this woman and I are like oil and water. She is not my friend, nor is she a friend to any special needs student. And she quite likely will be the subject of a letter to the Superintendent before the end of the year.

In any case, we are lucky that we do not experience these catastrophic meltdowns on a more frequent basis. The last time something like this happened, The Boy was about 10. The problem is, he is now almost 15 and bigger than me, and can apparently remove me as an obstacle (or at least attempt to). This scared The Man, but not me. It just is.

But it is a helpless feeling, and it is something that requires recovery.

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No News Isn’t Necessarily Good News

Communication from the school regarding The Boy has dwindled down to virtually nothing.  And I learned the hard way when The Boy was first in preschool that assuming that no news is good news is never a good idea.

He started preschool at his home school in January after being kicked out of his speech-based preschool run by the hospital. In March, his dad and I went to teacher conferences and asked about kindergarten. The teacher laughed and said, “Oh he won’t be ready for kindergarten next year! We’re going to recommend he do another year of preschool.” She waited 3 months to tell us she didn’t think he’d be ready. We went home and started looking for a house in a district with better schools and a better reputation for kids with autism.

Question Mark Graffiti by Bilal KamoonAnd now, everyone from his school has gone dark… Maybe I’m gaining a reputation for being “that mom” and they don’t want to poke the bear. I don’t know. I do know that the district is depending on a TA with three other children on her load to act as my son’s primary special education teacher. The teacher who teaches his special education math and language arts classes was out for a week last week, but tends to freak out about things that aren’t very freak-out worthy. I’m supposed to get an IEP progress report with his report card, and haven’t yet received one although I’ve had the report card for over a week.  His classroom teachers don’t often communicate directly with home, and expect parents to “look online” for assignments, tests, grades, everything. That makes their job easier, and mine infinitely harder (which assignments have been modified, are the due dates and number of questions the same for my kid, or not?). Two of his teachers have started a texting thing, where they will send out mass texts about upcoming quizzes and tests – great! Except the last text I got was on a Sunday, saying there was a test the next day… I was signing his agenda every night, and that is also supposed to be where assignments are written, but it’s pretty blank now, so I haven’t been checking or signing it.

They’ve taken him out of a social skills class (that’s in his IEP), and put him with his TA for an hour at the end of the day. They still call it “Social Skills” but the teacher is listed as his TA (is that even legal? I asked the principal in my last email and she didn’t respond to that question), and from what I can tell there are no other kids in it. They work on getting homework done. I don’t know if the class he left remains, or if they reassigned that teacher. She also used to teach him math, but they took him out of her class for that, as well (and she was a good one).

I’d love to sit down with The Boy’s TA over coffee and just have a heart to heart with her. Let her know that I believe she is the only thing keeping my kid afloat over there. Let her know that it’s not fair for the district to use her like they are. And let her know that she doesn’t have to try to solve everything herself. I think she’s trying to keep me from worrying.

But the lack of communication is making me nervous. Time to investigate, I guess.

Treading Water

Hey, friends. I’m having a hard time keeping my head above water lately. There’s a lot going on.  Our busy season at work is here, and the crap is hitting the fan.  Where I work, that means the blame is flying, and my job satisfaction plummets.  The Boy is just about done with school, which means I need to be gearing up to support him with activities and enrichment for the next five to six weeks until his camp starts.  We listed our house for sale today, which meant a weekend of staining the deck and the porch, and painting window trim (and getting a really stellar sunburn while doing it), and now means keeping the house tidy for showings…

When I get overwhelmed, I start to feel like someone or something is sitting on my chest.  I have to remind myself to breathe. I have to engage in a little self talk, and I have to, HAVE TO carve some time out to plan.  Planning helps me to see the possibilities, see the light at the end of the tunnel, and keep things in perspective.

In the meantime, I wanted to say thanks for reading, thanks for sticking around after a week with no posts, and if you get a chance, please send positive vibes my way.  Congrats to the teachers for making it through another year, and remember to be nice to people in the service sector.  We’re not all idiots.  Now, I’m going to carve out some planning time so I can send some really good posts your way this month – I can’t believe it’s June already!

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!

We Are Destroying Our Children

On the news last night, they featured a music program in a California school system that was funded by a grant because there wasn’t any money in the school budget for it.  This is not new, this happens all the time, but while watching this program I began to cry.  Not like, “Oh, that’s so sweet, and isn’t that great for those kids.” No, this was different.  These tears were more like, “This is completely and utterly unacceptable that our schools cannot afford arts programs.”

Do you know where the money is going?  It’s going to Pearson, and companies like Pearson who charge for their testing programs, for their test prep materials, even for their “professional development” programs – “experts” that they have chosen to send to schools willing to pay enough for the wisdom on… you guessed it, how to get the kids to pass the test.  How to teach more, faster.  How to determine what not to teach, so that you can teach the really important stuff – you know, the stuff that’s on the test.  How to get kindergartners to sit still long enough to take a standardized test.  Test taking strategies to teach to the kids to increase their odds of getting a correct answer… on the test.

Let me be clear – testing is not education.  But our kids and our teachers spend so much time on testing, there is very little time left for actual teaching and learning.

And in the meantime, we wonder why the rates of kids with anxiety have gone through the roof.  We wonder why kids are so mean to each other.  We wonder why our kids get addicted to video games, and their phones, and technology in general.  And I hate to say it, but in ten years or so, we’re going to be shocked at the rise in suicides and mental health issues in our youth.

They don’t know how to play anymore because they don’t have time.   They don’t have hobbies anymore because they don’t have time.  They don’t find joy in music or art because it’s not in their school day anymore, and you guessed it – they don’t have time after school.

They have hours – HOURS! of homework. Even in Kindergarten. They have shortened recess because the class didn’t get everything done.  They have silent lunch periods where they have to sit boy-girl, boy-girl so that they do not socialize and cause “trouble.” They are not allowed to have a real vacation – some teacher will assign a project, because kids will just get bored over break, right?  Why not use that time to get some more standards in?

I cried at that news story out of sheer rage and helplessness.  I left education in large part because it was heading in a very wrong direction, and it is only accelerating  toward that really bad place.  And it will have devastating, crippling effects on this generation of school kids that can only “socialize” and escape via technology.

What do we do? I do what I can. When my kid’s teacher assigns homework over break, I tell him it may not get done, and I might tell a little white lie about why.  My kid deserves a break, and he will get it if I have anything to say about it.  When a school in my district enacts these stupid policies about recess and lunch (and yes, those are real policies in place in an elementary school in my district), I will write letters to principals, superintendents, and school boards. And I will speak loudly to anyone who will listen about testing, and what it is doing to our kids and our educational system.

I do what I can.  It may not be much, but it’s better than crying at the TV.

Re-training

plannershot1The downside of having a son with autism in secondary school is the sheer numbers of teachers we have to re-train each year.  And I’m only half-joking.  Most of the teachers we have encountered since the Big School Switch of ’13, have been accommodating and flexible, and have fallen in love with The Boy relatively quickly, wanting to do anything in their power to help him succeed.  But here we are at the beginning of a new school year, dealing with stuff that is very clearly spelled out in his IEP, and the teachers are not yet implementing.

One of The Boy’s IEP goals directly relates to his use of the agenda, speaks to his difficulties in this area, yet within the first two weeks of school, we still only had one teacher ensuring he was utilizing it in his class. Then the homework hit the fan this week, when I had no idea two assignments even existed before they were due in science and social studies.

I emailed the teachers last night, basically copying and pasting from last year’s introductory email, explaining The Boy’s need for help with communication, planner use, and the dire need for them to let me know what the hell is going on, but stated in much more genteel language.  And I got some nice responses.  Yet in today’s planner entry, there was clearly still some misunderstanding from whoever-it-was that was writing in the planner (clearly not the teacher – an aide? a substitute? Who IS this person telling me that his assignment wasn’t finished and needed to be finished by tomorrow??).

And then there were the assignments we had busted our butts to make sure he got done, that were returned in his planner this evening without having even been turned in.  Yet another area of difficulty, yet another area in need of training.

After several emails, I finally got some traction and his program teacher has agreed to meet with his teachers tomorrow to review this stuff so we can get him going on the right track before he gets too behind. Thank goodness I don’t have to re-train her every year! She’s worth her weight in gold. 🙂

Once You Get to Know Him

IMG_1303Throughout his life, The Boy has attracted a great number of fans.  He has lots of people who love him deeply, including Fantastic Babysitter, his former ASD teacher(s), and lots of caregivers and therapists who have made up his support team.  Of course, The Man, The Boy’s grandparents and I adore him, too.  He makes us laugh, and surprises us everyday with his intelligence, sense of humor, and amazing abilities.  And when mentioned by name to teachers and administrators in schools of many hundreds, only his first name is necessary.  Everyone knows The Boy.

But usually, it doesn’t start out that way.

Usually, it takes a while for people to get to know The Boy, as I’m sure is the case with most kids and people on the spectrum.  The very challenges that define the disorder make it difficult for neuro-typical people to get to know him.  They tend to gloss over his human-ness and focus on what he can’t or won’t do for them.  And as they get increasingly frustrated with him, he picks up on it and begins to distrust that person, which increases the likelihood that he will not or won’t be able to do what they need or want him to do.

This is the downward slope upon which we were sliding with his band director.  But as sometimes happens, a realization was made that this kid (The Boy) is freaking awesome, and a second realization comes close behind – “If I was wrong about that, what else was I wrong about?”  As soon as a doubter sees the error of his or her ways, they not only like him, but they become a fan, and a crusader to get him whatever he needs to succeed.

Now that the band director has seen and heard what The Boy can do (including make the entire class – including the band director himself! – laugh with a joke), he has been extremely helpful and communicative.  He emailed after a recent playing test, saying how “proud” he was, probably because, as his program teacher said in her email that day, “his was the best tuba test of the day!”

I will take what I can get – no lie, this is a huge victory for The Boy.  And I absolutely love how loved my boy is.  But it sure would be nice for people to treat him well, and give him the benefit of the doubt before getting to know how awesome he is.  He shouldn’t have to prove it before people will accommodate him.