New Member of The Boy’s Tribe

Posted on July 20, 2016 by simpleijustdo

The Boy adores his new summer day camp. They go swimming at the community pool three times a week, he has friends from school who attend, and they play Wii bowling – what’s not to love?

He also has a new member of his tribe. The camp director is a high school special education teacher from another school in the community, and she is amazing. Wanna know how I know? The Boy gets a huge smile on his face when I mention her, and he doesn’t do that for everyone.

wood-lighting-creativity-paper

As I mentioned yesterday, he’s having some anxiety over absences again, exacerbated by one of his close friends being ambivalent about camp and intermittent with his attendance. Not only did the camp director figure out a way to entice his friend to come to camp (allowing him to do a few magic shows at camp), she has figured out a strategy to alleviate some of The Boy’s anxiety. She reasoned that his anxiety stems from not having control over whether or not others are absent, so why not allow him a little control over something else?

She said he is always letting her know when supplies are low (which is great because the staff does not), so she could have him do a daily inventory of supplies (and even campers!) with a clipboard. By allowing him input in tracking, it may alleviate some of his anxiety.

This, THIS, is the sign of a great teacher. One who actively thinks about her students and their needs, even outside of school (or camp) hours, and devises needs-based strategies to help them with their daily functioning and emotional state.

So, welcome to the tribe, Camp Director! The Boy can spot the good ones a mile away. Now we just have to get you to come over to our high school 😉

What It Means to Be Not-Quite-Verbal

Posted on July 5, 2016 by simpleijustdo

The Boy's self portrait The Boy is verbal. He can speak in short and long sentences, has quite a vocabulary, and is an incredible speller. But not always.

When he was a toddler, he didn’t have as many words as his peers, and we ended up in speech therapy. We used flash cards to get him to learn nouns and actions. He went to speech twice a week for several years.

He now loves words, and particularly loves word play, and puns and jokes where double entendres are at the center. But, there are times when he cannot speak. There are times when it seems he refuses to answer. His teachers encounter this often, and it isn’t (as they too often assume) because he doesn’t know the answer. He simply can’t.

And he wants to.

A few Halloweens ago, he was trick-or-treating with friends and I was following with another mom. A couple of giggly girls recognized The Boy, and came up to say hi. After they went off in a different direction, I asked him about them. “Who were they?” No response. Knowing he probably knew but couldn’t tell me, I tried not to make it a big deal and we continued on our way. Shortly after, we arrived at a house with two cars parked in the driveway. “Mom!” he said. “Er, look,” he said, pointing to one of the cars. “You know, the girls…” he said. He was giving me a clue, and excited he had a chance to communicate with me. After a little back and forth, I realized the car was a Lexus… and the girl’s name was “Alexis”. Then he told me the other girl’s name through another clue (she had the same first name as his favorite teacher from elementary school).

If you first understand that there are times when he can’t speak, and then also understand that he wants to, and finally give him the opportunity to give you clues, communicating is possible. It requires understanding and patience, though. And discrete labels aren’t helping, either. So I’ll stick with “Not-Quite-Verbal,” and keep working towards understanding.

Band Plan

Posted on June 15, 2016 by simpleijustdo

I met last week with the high school band director who had attempted to tell me that he didn’t think marching band was a good idea for The Boy, based on the experiences of a boy on the spectrum that had been in it last year. By the way, that boy is a friend of ours and busted his behind for that group, and found it very difficult to make friends in this marching band, but I digress… The high school special education teacher was there too, and I’m so glad she facilitated. She looks like she will be a rockstar for The Boy, and unfortunately, he needs a strong advocate in his own school system.

Shockingly, the band director had changed his tune a bit, although he did point out that the middle school band director also thought marching band would not be a good idea for The Boy, either. “But I’m not closing the door…” he said. Kinda hard when my foot is wedged in it, huh?

I had come prepared with a list of applicable laws, just in case, and a list of modifications and alternatives. Turns out, I didn’t need the laws (since he wasn’t “closing the door”), and when I suggested the first alternative, they both seemed receptive. After hashing out some details, we devised a plan: The Boy will play at Friday night football games only, and will play his sousaphone in the “pit” section, which is where the semi-stationary percussion instruments like xylophones and timpani are. This will allow him to participate without having to learn the “drill” (complicated moves), and without having to rehearse after school every day. He will be in the marching band class, but if they are not rehearsing music, the band director may send The Boy to English with the special education teacher, where he can work on any homework he may have, or get a second “dose” of a subject in which he has deficits.

And he will be in concert band in the spring, regardless of whether or not there is a second, “lower” band.

So, we have successfully shoved that damned door wide open, and created a place for my kid in their program. See how much can be accomplished with open minds at the table?

The Math Muddle Update

Posted on June 9, 2016 by simpleijustdo

The Senate Committee has sent the bill to the Senate, but has modified it to allow students the choice of taking integrated math classes, or a more traditional set of discrete math classes. They have also re-instituted the provisions which allow students with disabilities to substitute classes in order to earn a diploma.

We, personally, have dodged a bullet, but the teachers may now be left scrambling, trying to figure out how to offer completely different classes concurrently, and the senate committee members comments were basically summed up as, “suck it up – you’re teachers and you can figure it out.”

Why, oh why do they meddle in a profession about which they have no clue? Do they issue mandates on how medical professionals examine their patients? Do they issue bills requiring dentists to fill cavities according to a proscribed set of guidelines? Nope, just the educators get the benefit of their omniscient wisdom.

It is no wonder we parents of special needs parents have chronic stress and anxiety, when issues like this face our kiddos. When their very futures hang on the whims of pompous know-it-alls who have the power to change policy at a moments notice. I avoid being political here, but voting is necessary. We need to ensure that level heads prevail with our children’s futures on the line. Vote out the bad, and vote in the good. That is our only power, and it’s on us if we don’t use it, or if we throw it away.

Today is the Day

Posted on June 7, 2016 by simpleijustdo

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

Battle over Band

Posted on June 2, 2016 by simpleijustdo

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?

Orientation

Posted on April 7, 2016 by simpleijustdo

For most, high school orientation is an exciting time. I watched the 8th graders sit quietly and listen to the high school administration and teachers speak in the auditorium, and afterwards wander the halls, almost running at times they were so excited to see their friends and figure out how the building was laid out. During the presentation they were told what classes they would have to take as a freshman, and that they may not got the electives they want because they build the schedule from seniors down. They were told about foreign language, core classes, Career and Technical Ed classes, and counseling services.

Not once did they mention IEPs or 504s.

Few teachers were there, and only two out of the three counselors for the entire 900-student population were there. It was not a night designed to speak to teachers, or counselors, even though they made themselves available in the hallway after the presentation.

I spoke to the band director who had been a no-show for a meeting the previous day during my lunch period (drove 20 minutes to the school, waited 20 minutes while he was in a meeting with the principal, drove 20 minutes back to work). He took the wind out of my sails by saying The Boy may be able to participate in band second semester if they add a second, more remedial band like they hope to, but that was pretty much our only option at this point. This Boy who adores band, probably has perfect pitch, and wants to be a band director…

I attempted to speak to the counselor in the hallway to find out just how all of this scheduling would happen with us, but another parent cut right in front of me, and by that time I was frustrated, tired, and hungry so we walked away, and I allowed The Boy one more stop in our wandering tour before leaving.

A registration form came home two days ago, and since, again, I had thought this would be handled by the IEP, I emailed The Boy’s special ed teacher, the one who coordinates his program and the IEP meetings. She responded that she is on indefinite medical leave and had no idea, maybe I should email Mrs. X…

I asked The Boy how long his teacher had been gone. “Since last week,” he said.

As a result of all of this, I am disappointed, anxious, angry, and frustrated. And my attempt to meet with the director of special education was met with a promise of a phone call. I’m afraid if she does follow through with the phone call today, she may get an earful.

Special Education should not be an afterthought, an attempt to comply with the law. Special Education should not be something separate that isn’t talked about. Special Education should not be a reason to exclude kids.

And I should not have to pull teeth to find out information about my child’s educational experiences and program in the coming year.

This is unacceptable.

April, Autism, Awareness, and Acceptance

Posted on March 31, 2016 by simpleijustdo

Unfortunately, the autism community is polarized (and therefore paralyzed) on many issues. It’s fairly divisive (go figure in these days and times!), and people have widely differing views on everything from person-first language to vaccines. We can’t even agree on what to do with our little month of April. For most, “awareness” of autism doesn’t cut it, and we should be seeking “acceptance” of our kiddos and their behaviors, needs, and neurology from the general populace. Some (myself included) feel like awareness is a necessary first step that leads to acceptance, but others are not content to be patient with the rest of the world.

I get it.

But if we as a community continue to argue about every issue that exists, the result could be worse than a lack of awareness. If the message is muddled or unclear, no one hears it.

We need to agree to disagree on the issues that divide us. Table them until we can tackle each in its own time. Focus on one thing that will do the most good for those on the spectrum.

In my humble opinion, this one thing would be autism awareness and competence of our nation’s educators.

It is unfathomable to me that teachers across the country are still unaware of the core deficits of autism. They are as of yet unaware that an IEP is a federal document, and a binding agreement to which they are held accountable. They do not know how to make simple modifications and accommodations for a growing segment of their student population. And of course I do not mean all, or even most teachers in this country. But our special ed teachers need help, folks. If our kiddos have a right to the least restrictive environment, we want them in general ed classrooms with teachers who have a clue. Because let’s face it – our kids are at school each day much longer than they are at home. And if they are met with adults who see them as a “problem” or ” more work” or are just clueless in general about how they work, how devastating is that to this entire generation?

If the community could just get behind one urgent issue, this would get my vote, and I don’t think we’re very divided on this one.

This would be my wish for April and the autism community at large.

Dear Autism Community

Transition to High School: He Has No Idea

Posted on March 22, 2016 by simpleijustdo

Last week, I wrote about the “attempt” by the district to get some input from The Boy regarding his future for our upcoming IEP meeting during which we will discuss the transition to high school. The amount of effort put into getting his input was exactly one worksheet, borrowed from another school district. At that time, I was too busy shaking my head to know exactly what to do next.

I took that worksheet and put it into a digestible format (PowerPoint), and added some possible answers for The Boy to choose. I didn’t send anything in on the “due date” which was Friday. Over the weekend, I sat down briefly with The Boy and the roughly 15 slides with questions about his future. “Hm,” he’d say. “Go to the next one,” and “I haven’t really thought about that before,” were common responses. To summarize, I got nothin’. Monday, I sent in my responses to the parent survey (it is now Tuesday morning, and they are still in his backpack, by the way), and emailed his special ed teacher to explain that he didn’t have much response to the student survey, and it was either because he really doesn’t have any idea, or he’s not comfortable sharing his ideas at this time. Her response was that she had a simpler survey format she could send home. No doubt copied from the same school district… I replied that I didn’t think it was the format, as I had modified that for him, but the content was the issue, and that he really has no response.

What do they expect? Mom asks 15 questions or hands him the worksheet and they’re magically going to get profound and thoughtful answers to just what is going on inside my son’s brain? For the umpteenth time in the past three years, I have to ask, “Are you NEW here? Do you not know ANYTHING about autism?”

A serious, thoughtful, student-centered approach would be to integrate some of this transition planning throughout the 8th grade year, directly within the “social skills class” curriculum… You know, that curriculum that the principal wants to change willy-nilly based on what she feels like is important for my son? But what do I know?

I sometimes wish I didn’t know how half-assed they are approaching my kid’s education. Maybe ignorance would be bliss. But I do know, and I’m powerless to change the culture of the school and the district. That change has to come from within. I can scream and shout and threaten legal action all I want, but change is terrifyingly slow in education, and even those on the inside are mostly powerless to change it, as well.

My only course of action is to muddle through and shake my head.

We Are Destroying Our Children

Posted on December 18, 2014 by simpleijustdo

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.