His Hopes & Dreams

His DreamsThe other day, The Man, The Boy and I were riding around as we are wont to do on the weekends, and we happened upon the local agency that employs young adults with intellectual and developmental disabilities once they’ve aged out of public school. The Man and I explained to The Boy what the young people with autism and other issues did inside the building. “They put together candy bouquets, do laundry, all sorts of stuff, and that’s their job,” I explained. “Isn’t that cool?” I asked.

A pause from the back seat, and then, “Can you be a band director there? Because that’s what I think I’d like to do.”

My heart just about broke while I was trying to find an answer. The Man responded that to be a band director you had to go to college, and in order to go to college you had to listen to your teachers and do all of your homework because that would be a lot of hard work. “I do all of my homework and listen to my teachers,” The Boy replied. “Ok,” we said and the subject naturally wandered in other directions as we drove on.

Could The Boy go to college, earn a degree, teach his own classes someday? Quite possibly. Don’t for a second think that I doubt my sons abilities.

What I doubt are the supports he would need to get there and our ability to afford those supports that are not in place. Realistically, colleges are not yet equipped for our kiddos (Hell, his middle school is not yet equipped…). And neither is the real world.

So how do I go about tempering my boy’s dreams, when it is the very last thing I want to do?

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The Principal’s Office

principal's officeI was asked into the Principal’s Office yesterday, and it’s amazing how that still makes me feel in my 40s.

I think many special needs parents go through this experience more often than they’d like, and I wonder how often it’s a power play. I’m beginning to think yesterday’s meeting was exactly that.

If you have followed the blog, you know that The Boy goes to a school across the district, although we live much closer now, because we worked hard to get him placed in a pilot program for those with HFA (high-functioning autism).  We were told that the program would likely not only continue at the middle school, but would then be expanded into the high school and elementary schools.  Except that it not only wasn’t expanded, it was discontinued this year. Not only did they yank the program and it’s supports, they yanked the autism teacher out of the school, reduced the teaching assistants in the school, and left the kids hanging.  Oh and any kids who attended the middle school were now re-assigned to their home high school, putting last year’s 8th graders into a brand new-to-them high school where they know virtually no one.  Nice, huh?

And the principal and the vice principal at the middle school retired, too.

Lots of change for The Boy, yet he’s handled it remarkably well.

We’ve had to deal with increased anxiety a bit this year, as will happen with teens on the spectrum from what I hear.  He has always hated friends being absent, and had to also deal with one of his close friend-who-is-a-girl moving away with no notice.

This past Friday was a doozy of a day. They had scheduled an assembly, another one of his friends-who-is-a-girl was absent, and he had a big performance with the band that evening at the high school football game – very excited, but very overwhelmed.  It was not a good day, and the lead up to the performance was very, very difficult.  I have never seen The Boy so paralyzed by anxiety, and it was heartbreaking.

Yesterday, I had to go in early to make a slight adjustment to the IEP regarding length of time, which really only required a signature, but according to the school required an IEP meeting with three teachers and myself, and ridiculous amounts of paper.  I took The Boy in to school. As students started to arrive, he noticed that his friend-who-is-a-girl wasn’t there again, and began to perseverate, become agitated, and look like he was going to bolt.

So when I left his TA to handle it, I went to the office to handle some other paperwork and was promptly summoned into the principal’s office to discuss any “insights” I had into The Boy’s behavior as of late.

I was told he had had four “bad days” this year, which she interpreted as an escalation, and she was wondering what strategies I could offer, as she had limited staff, and basically implied that she couldn’t afford to have her only TA walking the halls the whole day with my child, as happened on Friday. And the TA was just about the only person who could “get through to him”.

Come to find out, she was counting the morning’s troubles as a bad day (not in my book, as he was already in science class by the time I had walked into her office), and another of the “four days” involved her TA being late to her bus route at the end of the day, because The Boy insisted on giving one of his friends-who-is-a-girl a high five before he got on the bus.  Problematic to be sure, but again, not a “bad day” in my book.

That left us with Friday. “And Thursday was a bad day, too,” she said.  “I hadn’t heard anything about Thursday,” I replied.  “Well, it wasn’t as bad as Friday, but it wasn’t a good day.”

As happens so often, I could only formulate what I should have said after the fact. I explained his increased anxiety as of late, and offered that a lack of communication about these incidents and disruptions to his day (like Friday’s assembly) were obstacles to The Boy’s success. I explained that the anxiety was new to us at home, as well, and that I didn’t have any magic answers. And that was about it.

I should have said that her lack of TAs was not my problem. She needs to take that up with her central office. I should have said that four bad days since August meant that The Boy was doing pretty well considering all the change the district had foisted upon him.  I should have said that if his current TA is the only one who can get trough to him, then she needed to come up with a plan to address that, as it is her school, her educational facility, and her staff. I should have said that it was the district’s policy to employ TAs as bus drivers that was the problem on the one day, not anything that had to do with me. I should have said that kids with autism will have bad days, and that if she or his teachers couldn’t handle that, then they need more training. I should have said that she needed to be approaching the district autism specialist for strategies, rather than the parent who is not at school on a daily basis.

Needless to say, the meeting left me with a bad taste in my mouth. I’m thinking of writing a follow up email with my list of things I should have said. I’m not sure if it’s worth my time, as it seems she is ignorant of what her role is, and of what appropriate expectations of an 8th grader on the spectrum are.

I am beginning to become resigned to the fact that dealing with the school will be a continuous struggle for the next five years, and that gives me even more impetus to find meaningful opportunities for The Boy outside of the school day, and possibly start our own business to afford him a pleasant working experience. I’m just sorry to see the rampant ignorance that still exists, even within the walls of one of the best schools in the district, and even at the highest level.  What more do we have to do??

Escalating the Situation at 30,000 Feet

aircraft-airplane-flying-2105If 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.

All It Takes is One Dumb Bus Driver

The BusThis past Friday, The Boy was left behind by his bus.

Our outside light was on, and our front window blinds (all three of them) were open. The driver rolled up to our house early, honked once, waited less than 10 seconds, and then turned around in the cul de sac and left.

Recently, when our regular bus driver began to arrive earlier and earlier, we worked out an arrangement with her. She now waits for him, and does not expect him to exit the house until around 6:30am, which has been his expectation and his routine for the entire school year.

When the bus left on Friday, I ran out to the porch, waving my arms, to no avail. The Boy began to get upset, wondering how he was going to get to school. We were in a panic. I called the transportation office who informed me there was a substitute bus driver, and assured me that they would instruct her to come back to pick The Boy up. In the meantime, he had returned to bed, unwilling to go to school if he was going to be late.

At this point, The Man offered to take The Boy to school himself (along with a bribe of a donut) so that he could arrive on time. I gave The Boy the choice of waiting for his bus to return, or going with The Man, and he chose to go with The Man.

When the bus arrived, I went out to speak with the driver. She interrupted me before I could get my first sentence out, was extremely defensive and rude, making faces at me, and interrupting me many, many times. She even challenged the truth of what I was saying, and pulled another child up from his seat to “bear witness” that The Boy was not visible when she was there. I told her the arrangement we had with our regular bus driver, but she seemed much more concerned about whether or not I was accusing her of being late, which I obviously wasn’t.  I was shaking by the time I was finished and stalked back into the house.

Incidents like these can not only have immediate and damaging effects (like a meltdown, or refusal to go to school), but they can also have lasting effects on children like The Boy. It will be a long, long time before he can trust that his bus will not leave him behind. Drivers need to have patience with all students, but especially with those with special needs. Would this driver have waited ten seconds after honking and driven off if The Boy was in a wheelchair? Probably not, but she appeared to not have any regard for The Boy’s specific needs.

Everyone employed by the school district that comes into contact with our kiddos should have training about what autism is, the core deficits children with autism have, and how each employee can help students with special needs find success throughout their school day. Anything less is not acceptable.

This is a large excerpt from the letter I am sending to the Director of Transportation, courtesy copied to the Director of Special Education and the Superintendent.  I ain’t playin’ and it’s not over if you’re going to be rude to me.