The Real World

Posted on August 15, 2018 by simpleijustdo

The Boy has had a helluva week. That means I have too, by proxy.

After a day and a half at a private driving school class, he was kicked out. Despite assurances to the contrary, the staff was not willing to work with him and for him to make sure he learned the material. They acted like I hadn’t been explicit about what his learning needs were. I asked if he could stay in the class just to get the instruction without taking any assessments. Not only did they refuse, they would not refund my money.

Then I found out that this entire summer, when my son went to the local pool three times a week with his autism camp, one of the lifeguards belittled the kids from camp, even commenting that she didn’t get “paid enough to deal with these retards.”

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I’m not naive enough to have ever believed the “real world” is or ever was prepared for our kiddos. But it’s extremely difficult to watch your child get pummeled by the ugly out there. (And I use “ugly” as southerners often do, to describe someone whose soul is full of hatred, venom, and bile.) It’s even more difficult to watch the “real world” get uglier to “the others” in our society by leaps and bounds, every damned day.

It’s very hard to hold on to hope.

This kid has been rejected, abandoned, and discriminated against far too often in his 16 years on this planet. And he doesn’t deserve it.

Power, Peers, and a Sad Evening: Part II

Posted on December 21, 2016 by simpleijustdo

I met with the high school principal, The Boy’s special education teacher, and the band director last Friday. It was their last day before break, and it was apparent the principal wanted to clear her plate before she left for two weeks. She explained that they take any hint of bullying very seriously, and she wanted to speak with me right away without delaying the conversation two weeks. Potato, pot-ah-toh.

Let me preface this by saying it was not an adversarial conversation. The principal and I did most of the talking, and we understood each other to a great extent. But, she lost me when she could see both sides of the issue. I bit my tongue, let her finish her thought, and promptly explained that I used to be a band director for a living and that behavior was never, ever acceptable. You don’t touch other people’s instruments. She didn’t disagree.

She felt it wasn’t malicious, and therefore it wasn’t bullying but an extremely poor choice. The kids involved felt The Boy was playing wrong notes, and that they needed to apparently stop him from doing so. She said she questioned them on that when she spoke to them, asking who had given them the authority to do that. They couldn’t answer. They were very remorseful, she said.

We talked more about whether or not The Boy is included in the band class, and in the school as a whole. She said she thought I saw different things at home than they did in school. “He has a group of people that he hugs and gives high fives to every day,” she said. “I know, but he doesn’t know the name of the kid he sits next to every day in band,” I said. They went back and forth between trying to assure me that no one has negative feelings toward him, and highlighting how he keeps to himself and insists during sectionals that he knows the material. She admitted that one of the students she spoke with about the incident “guessed” that The Boy was autistic because as he explained it, “I don’t know anything about autism, so that must be what he has.”

Ugh.

They continued to prove my point while it continued to go over their heads. She insisted that they would have done the same to any other students who might have been playing wrong notes, and I knew that was preventative defense against further action from me. Because that is a load of horseshit, if you’ll excuse my language. They know my son doesn’t have the verbal agility to defend himself or get the attention of the teacher, or even explain what happened after the fact. I only found out because a friend’s kid watched it go down. They took advantage of him precisely because of his autism. If this wasn’t bullying, it was a shocking display of the bias that exists in the school culture that students with disabilities are “less than,” and that excluding others from participating will get you a stern talking to from the principal and that’s it, because you didn’t mean any harm, and are “good kids.”

Before the meeting ended, as it was clear the principal was ready to get to her vacation, I requested they investigate peer to peer programs and seriously consider implementing something so that a “poor choice” like this wouldn’t even enter their minds in the future. I got some vague promises to look into it, and the meeting was over.

But it’s not over.

I’ve already drafted a follow up email to be sent with my further reflections on the incident and how it was handled. And I will also be following up with the various and sundry promises made. I can be a magnificent thorn when I want to be.

I’ll keep you posted.

When Government Tries to Make Decisions About Education

Posted on June 8, 2016 by simpleijustdo

It’s an unmitigated disaster. You have people whose only experience in the classroom was as a student, people who don’t understand the depth and breadth of education philosophy or pedagogy, people who bring their own agendas and axes that they would like to grind.

I just finished reading an article that applies to the senate in our state considering a sweeping bill that would make sweeping changes to high school requirements for students with disabilities. You see, my state has already created a quasi-legal situation students with disabilities, creating a separate but equal “track” to “train” kids with cognitive disabilities or learning disabilities in an occupational course of study, with the idea of getting them prepared for the workforce rather than college. And due to the lack of availability for accommodations, modifications, and supports in the traditional course of study, many like my son, have no real choice to make.

calculator-scientific Now they have decided, these wonderfully removed legislators without a lick of educational background, that the provision that allows for the integrated math course taken over the course of the occupation program is insufficient, and that disabilities be damned, no student will graduate without taking four consecutive and specific years of math. You can’t do your times tables? Screw you kid. A statement from the nonprofit Exceptional Children’s Assistance Center said in an alert they sent out Tuesday, “Under this law, if a student – any student – cannot master a math course even more challenging than Algebra II, they cannot earn a high school diploma.”

And we are back to discriminating, folks. Kids who are not allowed to earn a diploma based on the way they were born, based on their neurology. “Here’s an alternative to a diploma, a certificate of completion, which is like a participation award. That should make you happy,” they seem to say. It’s a case of “raising the standards” to look like you are trying to make things better, rather than addressing the very real issues of poor teacher pay, and lack of funding for even textbooks. It’s a case of caring more about your image than the kids of your state. It’s a case of politicians being so completely arrogant in their righteousness that they are literally doing harm to children.

I couldn’t be more disgusted or enraged.

A Bigot and a Bully

Posted on July 8, 2015 by simpleijustdo

Last year, the landlord and owner of the mobile home park where my parents live approached The Man and told him that we needed to “keep (our) retarded kid inside.” He used the r-word several times in reference to The Boy, even after The Man asked him not to use the word. He then went on to make wild accusations about The Man, and at the time, I was very proud of my husband for not hauling off and beating the pathetic excuse for a man, because I’m not sure I wouldn’t have gone ape$#!! on him.

Fast forward a year, almost to the day, and this pathetic excuse for a man writes a letter, knocks on my parents’ door and hands it to my mother, saying, “Read this.” He then took a few steps off the porch and said, “I’m sorry but that’s just how I feel,” and walked away.

The letter explained that he had several complaints about The Boy playing in the park roadway, jumping out in front of cars, and lying down on the roadway, as well as using his scooter in the roadway. He requested that The Boy be supervised at all times while outside.

Let me start by saying that the “speed limit” in the park is 5 miles per hour, with a sign saying “Slow, Children Playing” above every speed limit sign posted in the park, and that new signs were erected within the last two months. Let me also add that there is no sidewalk in the park, nor is there a “recreation area.” In addition, other residents and guests of all ages ride their bikes and walk their dogs in the roadway.

My son is thirteen years old, and knows to get out of the way of an oncoming car, even if it is only going 5 miles per hour. He does not jump out in front of cars, nor does he lie down in the road. But my son is “different” than all the other residents and guests. And that is the basis for this discrimination and harassment. That is the basis for how this pathetic excuse for a man “feels,” and not any fabricated “complaints.” You kind of give away your “tell” when you call a kid “retarded.”

I have spoken with an attorney, drafted and sent a letter, and copied it to the sheriff’s department as well as the state Attorney General. This pathetic excuse for a man has not only violated the Americans with Disabilities Act, but also a state act that was passed to protect the rights of those with disabilities. We also plan to make an appointment with the sheriff’s department to take The Boy there and meet with some deputies, alert them to the situation, and educate them a bit about The Boy and his autism, just in case.

There really are people out there like this pathetic excuse for a man, folks. They exist and they think they have the right to say and do what they’d like, as well as dictate what those who are different can and can’t do. They are so wrong, and this good ol’ boy, pathetic excuse for a man is gonna learn how wrong he is.

What’s Been Going On

Posted on June 30, 2015 by simpleijustdo

Hello, Friends!

This is high season at work, so working a few hours extra is not unheard of, and there’s a lot going on at home, too. I just wanted to write a quick little post to say “hey!” and to give you an update. It seems everything happens all at once, and unfortunately, it’s not the right time to write about these things in detail, but…

We don’t want to jinx it, so The Man doesn’t want me to write about it yet, but things are looking good in the selling-of-our-house arena…
This ugly situation has reared it’s head again, and this time, we are speaking to a lawyer…
Camp will work out after all, for The Boy, but he’ll have to wait until the end of this month, which happens to coincide with the only week his dad wanted him this summer. If you follow the page on facebook, you may remember that the ex’s dad has been diagnosed with stage 5 Alzheimer’s and he asked for The Boy the same week camp started, as well as a family reunion we are attending out of state, so I told him we could do another week in July, and have yet to hear back from him.
Some friends and I are looking into Rising Tide Car Wash in Florida to see if we can replicate something like that in our area for our kiddos. We are excited!
I answered one of our phone lines at work and connected with a local mom who just moved here. “My son is on the autism spectrum…,” she said, and so the conversation began. I love it when that happens!
Did you know it’s almost the 4th of July? Where did the summer go??

Thanks, friends, for listening and sticking around. It’s been a tough summer so far, but how do we manage?

Simple. We Just Do.

😉

Escalating the Situation at 30,000 Feet

Posted on May 13, 2015 by simpleijustdo

If autism is on your radar, you are now aware of the recent forced deplaning of a family of a girl with autism by a United Airlines flight crew.

From the reports I have heard, including the mother’s own statements, it didn’t need to go down like that. The way it was handled increased the stigma of those on the spectrum, and created fear where there wasn’t any previously.

I think Mom, already in high-anxiety-panic mode, and trying to avert a meltdown tried to get some help, and used a poorly phrased warning to encourage the unhelpful and apparently untrained flight staff to be proactive. Unfortunately, it may have sounded like a threat, and anyone who flies with any regularity knows that any possible threats are “handled” immediately, with questions only asked after the fact.

And let’s not even go there about her being unprepared. Autism moms are not machines, and there are times when we are caught unawares by our kiddos. It seems that she did the best she could with what she had at hand. And asked for some warmed up rice.

I think the flight staff who is trained in how to de-escalate situations utterly failed in this instance. Maybe Mom came off as “that” mom, the demanding one, and they responded with what many of us in the service industry do when customers start to get snippy and demanding. We slip into, “I’m sorry. That’s our policy,” because we can, and we take a secret glee in being unable to help someone who is so clearly trying to abuse the system. But they failed to recognize that this was not an unhappy and demanding customer, this was a mom making a plea for the sake of her daughter and the comfort of the other passengers. They failed to listen when she said her daughter was autistic. They failed to do their jobs and do what they could to diffuse the situation.

They brought her the rice and probably immediately went to the captain, reporting a threatening passenger because they could, and because that would teach her to be demanding and make threats on a plane.

And the captain, trusting his staff, made the call.

But even he failed to do his job and investigate any further before making that call.

The flight staff failed all of their customers. They failed to listen, they failed to be compassionate human beings, they failed to diffuse the situation. But more than that, they violated this young person’s rights.

So my personal take is that yes, this flight crew needs training about passengers with special needs, as well as training in disability rights. (Many flight crews do – I can tell you stories about the many, many flights I’ve taken with The Boy by myself.) But they also need to go back to square one and be retrained about their primary job in that airplane – de-escalating any potential situation.

Like a Smack in the Face

Posted on June 24, 2014 by simpleijustdo

It happened at about 8:15 this morning, and as I write this almost 12 hours later, I am still in disbelief.

The Man called me at work and asked if I had a minute to talk. “Uh oh,” I thought. He proceeded to tell me about his encounter with the mobile home park owner where my parents live.

First, some background. The Boy goes to Grammy’s during the day while we work in the summer, and gets dropped off there after school during the school year. He likes to walk along the drive that runs by in front of the trailer, always barefoot. When cars come, always extremely slowly because a) they are mostly old people who live there, and b) there are 101 speed bumps on the half-mile of drive around the small park, he gets off the road to let them pass.

Today, the owner told The Man that we need to keep our “retarded kid inside.”

Yup, you read that right, word for word.

He then backtracked and told The Man that he couldn’t “play” on the road. He could play on the empty lot at the bend in the road a few doors down, but he couldn’t play in the road because he had gotten complaints, and he had almost been hit by several cars.

Ironically, a sign like this is posted at the entrance to the park…

Seemingly unaware of how many laws he had already broken, he went on to provoke The Man even further, and continued to use the r-word even after The Man had corrected him. I’m amazed this guy didn’t end up in the hospital. The Man handled it like a rockstar, and ended the conversation before he could get into trouble. He, too, is still livid 12 hours later.

I got off the phone with The Man and realized I felt like I had been punched or smacked in the face. I read a recent post by Autism Daddy where he wondered where all the hatred was. Apparently it lives down here.

The Man, Grammy and Poppy and I are all seething with anger and injustice, but like smart people, we are devising just how best to deal with this worthless human being. Grammy has a speech prepared for the next time she encounters this poor excuse for a man, and we will have to see how he responds and go from there. His intent is to piss us off enough that my parents will move out, and his “problem” will be solved. But you know what? They aren’t going anywhere. And The Boy will continue to walk where he pleases. We won’t engage with this jackhole, and we won’t be threatened or intimidated. He went so far over the line that he has absolutely no recourse now but to shut up and go away. Anything else will be met with quick and swift response from us, and it will not end well for him.

I’m interested to see what will happen next. You?

Managing My Own Anger

Posted on February 4, 2014 by simpleijustdo

Yesterday was a doozy of a Monday. I felt like Alexander in the Terrible, Horrible, No Good, Very Bad Day (a favorite when I was growing up). There was an ant in The Boy’s juice, the cable box went wonky again, a co-worker lied to our boss and threw me under the bus for a mistake that was very clearly hers and hers alone.

And mid-afternoon I get an email from The Boy’s principal saying perhaps he could start on trumpet this week because he doesn’t meet the “criteria” to play the tuba. Yeah, that just happened.

There were no “criteria” to play the tuba even mentioned at our last meeting. That band director is discriminating against my child.

Luckily, I didn’t get the email until about 3 or so, because truthfully, I couldn’t concentrate on work after that. I was extremely preoccupied, and downright pissed off. Heart beating rapidly, I left work right at 5, and drove to pick up The Boy, planning my evening around the big, long response I was going to write.

The Boy was in a great mood, and I faked a good mood for him, as well. I shared the happenings with my parents and strategized about next steps with them.

When we got home, I began to type all of the phrases that had been rolling around in my head for three hours, constructing my three-page response. And I began to shake uncontrollably. Not with rage, but with anxiety. I also made several trips to the bathroom, which I have had to do when stressed since my mid-thirties. When The Man came home an hour later, we talked, and strategized some more, and I continued to write. I spoke with The Boy’s autism teacher on the phone to gain some insight, and then I continued to write. The Man knows that getting all of my thoughts down just right in my response was the key to my calm. Until it was a finished draft ready to send, it would be on my mind.

And of course, I couldn’t sleep last night. I knew it would happen, but there’s nothing I can do about it, so I just roll with it, going over things yet again in my head for several hours.

My draft is now complete, and it is a killer letter. I have a plan in place, no matter the response. He will play the tuba, and will not be switching to anything else. I’m still angry and anxious, but I’m managing it, thanks to my outlets: writing and planning. The key is knowing yourself enough to know how you are going to respond to anger, both physically and mentally, and to have something accessible which calms you… A bit like our kiddos, huh?