Sensory Input

Posted on October 20, 2015 by simpleijustdo

One of the things I like best about the house where we are living now is that there is a large tree in the backyard with a swing. Even though we don’t really have an area for The Boy to ride his bike or his scooter, as we did in our old house, the swing has become his go-to spot. When we get home every day, he drops his stuff in his room and makes a bee-line for the swing. It reminds me of all of those years of occupational therapy, and makes me realize my kid still has some sensory needs, even as a teenager.

He’s gotten almost too big for the boys to have their wrestling matches, and he’s not involved in any sports or anything like that, so what’s a kid to do?

Even though you can’t quite see his face, let me assure you there is a big smile there. And I’m so happy he found something he needed.

The Importance of Friends

Posted on October 15, 2015 by simpleijustdo

I’ve never made friends easily. Maybe it’s a spectrummy trait, but I’ve always been somewhat socially awkward, not sure what to say, or when to say it in a conversation. I don’t read others’ cues all that well, and it’s always been tricky. My friends over the years have been much like me, not completely socially adept, and never the popular ones, and I like it that way.

The Man makes friends easily, or so I surmise, because he seems to know everyone within a 100 mile radius. Part of that is growing up here, part of it is having several successful businesses in the area, so that people either went to school with him, bought a mattress from him, bought some blinds from him, or had him fix their sink/closet/screen door/roof. We often can’t get out of the grocery store on a weeknight without stopping to talk to two or three people. And part of his day is structured around breaks at the convenience store and the hardware store so that he can shoot the breeze with some folks.

But, we don’t hang out with other couples. We don’t “entertain”. When we watch HGTV and these young couples are adamant they need space for that, he and I just look at each other uncomprehendingly. We barely use our dining table for us, let alone needing space for other people. As an entity, we are not very social.

The Boy has friends at school, and there is one family with a few kids that he feels comfortable going to hang out with outside of school. Otherwise, he enjoys hanging out in his room with his electronics, or walking around the yard. He enjoys being by himself, obviously.

We like it this way.

However… People need friends.

Being social to the point of doing stuff with other people is difficult, I think, for all three of us. And just because something is difficult, doesn’t mean it’s not necessary.

There are other children at school that I think The Boy would like to hang out with, but either the families have not shown much interest, or I’m not sure how to contact them. And we don’t often attend the autism society chapter’s functions because many times they are on Saturdays, when we do family stuff.

When I left my job, the one person I considered a friend there pretty much fell off the face of the earth. I tried for awhile, but when it wasn’t reciprocated, I stopped trying. Everyone I work with now is in a different place in life than I am, i.e. just quit college… And those in the area I do call friends are soooo, so busy.

It’s a difficult thing. Between homework battles, trying to get dinner on the table, paying bills, looking for more meaningful work, and enjoying each other as a family, I feel like there isn’t much time anyway. But I also increasingly feel like we’re more and more isolated, and we need to do something about it.

Even if it isn’t comfortable.

The Principal’s Office

Posted on October 14, 2015 by simpleijustdo

I 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??

Milestones & Success

Posted on October 13, 2015 by simpleijustdo

Yesterday was my birthday, and naturally, I am in a reflective mood.

I’ve learned so much through The Boy about milestones and success, and how the social constructs that make us believe we aren’t quite achieving as much as we should (there’s that awful word) are a figment of our own imaginations. And yet…

I have to confess that as I step firmly into my 40s, I wonder what I have to show for myself. Not in terms of what I’ve accomplished, but where I am currently. Let me make perfectly clear that I am happy. I made a conscious decision to leave teaching to be with loved ones and for my own mental health. I made another conscious decision to leave my decent-paying job, again for my own mental health. But I can’t honestly say that working for minimum wage has done much for my own sense of self-worth.

I am very happy and grateful to be employed, don’t get me wrong. And my current position is just what I needed, really. The complete lack of stress, the laid back coworkers, the peace of mind are so valuable to me, I can’t really put it into words. But peace of mind doesn’t pay the bills, and I am not old enough to retire. In other words, I still have so much to give, so much to offer. But the job market here just won’t bear it.

On the continuum of employment, from stressful to no-stress, from meaningful to not-in-the-least-important-to-society, from almost $100K to minimum wage, I am still searching for that middle ground, and it is elusive. And work is important to me.

The Man and I have long considered creating our own business plan, not only for ourselves, but also to ensure that The Boy has meaningful employment, as well (I mean, if I can’t find employment, imagine how difficult it will be for a young man on the spectrum). If necessity is the mother of invention, we may be giving birth to our own opportunities very soon.

I just have to remind myself (continously) that if I start to walk down the path of “shoulds” (ie I should be making this much, I should be doing xyz), I will be in the weeds. That path was never right for The Boy, and can do nothing but harm to me. We will just need to blaze our own path to find that balance and meaning, and have faith that we will find our way.

Turning it Around

Posted on October 8, 2015 by simpleijustdo

Sometimes what makes me most proud of The Boy is when he is able to turn it around. Heading for a meltdown, but able to stop, relax a bit, refocus, and get back to work.

A couple of weeks ago, I was at my desk at home, preparing to go to work. I got a phone call from the school, and it was the counselor (not a usual person to call). She explained that The Boy was in her office because he had gotten upset in Language Arts, and had become destructive, throwing things, and sweeping things off of desks. This is not typical for The Boy unless he is very upset. The counselor said, “He thought maybe he should call you,” and I replied, “Ok…” I was sure he was going to ask me to come pick him up, which I don’t often do, as that would teach him that he can escape the tough stuff. Besides, I have to work, and don’t get paid unless I do, so there’s that.

“What’s up, Bub?”

“Today is the same as yesterday,” he said.

“Does that mean that Friend-Who-Is-A-Girl is not at school today?”

“Yeah. She moved,” he said, whining.

“I don’t think so, Bub. I think she’s just on vacation or has a cold or something. But here’s the thing. I know you’re upset, but throwing things and knocking things off of desks is not a good way to handle your anger, right?”

“Right.”

“And going to school is your job, and you need to be in class, right?”

“Right.”

“So what’s the plan? Are you going to take a breath and go back to class?”

“Yeah, I think I can do that,” he said, and handed the phone back to the counselor. She didn’t sound at all sure that this was a good idea, but I know my son. Once he has decided upon a course of action, he does it. And he did.

The TA emailed me later that day to explain that there had been a substitute teacher in language arts, and she had been called away, so she didn’t want to leave him in class with someone who didn’t know him, and that after we talked on the phone, he had an excellent rest of the day.

I think many of us have a hard time “turning it around”. It’s hard for me to focus on the positives of a situation that is making me tear my hair out, or to switch gears right in the middle of something. But I am so proud of this young man being able to do this. Proud and hopeful.

Screaming Children in Public Places

Posted on October 7, 2015 by simpleijustdo

There seems to have been a recurring theme all summer, and it has now bled into the fall with the latest story of a couple of ladies who took it upon themselves to write a passive aggressive note to a parent at a restaurant. In previous cases, a restaurant owner balled out a toddler, and a woman had her check paid by a stranger.

It seems a pretty divisive conversation. People do not hesitate to comment, and comment strongly, about WHAT THEY THINK.

I get both sides of the issue. I really do. And I was not there in any of these cases, so I personally do not know the extent of the “screaming”. There are times that The Man and I have been out to dinner, and been severely annoyed by a toddler allowed to run around the wooden booth behind us, and there are other times when a particularly enthusiastic child doesn’t bother me. A lot depends on the situation, the age of the child, and the parents’ attempt or lack thereof to control the behavior.

But here’s the thing. Public spaces are public. Kids are kids. Restaurants are open to all kinds of people. You cannot control your environment unless you are at home, and as soon as you try to, you infringe on someone else’s rights. Parents with rambunctious children have a right to go out to eat once in awhile. And you may have to suffer through an annoying experience once in awhile. That’s just life. Unless you want to go off-grid and live like a hermit, you will have to deal with other people who are not under your control.

Also, how do you expect children to learn how to behave in restaurants if they never get the chance to go to one? What are we teaching children if we whisk them out of every public place as soon as they make a peep? The Boy is not whisked out of his classroom every time he needs to pace or starts to get upset, nor should he be. He needs to learn how to manage his emotions and still participate in class, much like a small child should learn this as well. They can only do that in situ.

This does all depend on the parent making the moment teachable, and monitoring when the behavior gets to be too much for the surroundings.

Judgy and opiniony. It’s getting a little thick out there again. Be nice, don’t judge, offer to help, and get over it.

Not Creepy, Just Different

Posted on October 6, 2015 by simpleijustdo

If you watch Jeopardy!, you’ll know that the current champion has won about a week’s worth of games handily. Matt Jackson has blown his competition out of the water, and unlike other winners of his ilk, is actually likeable. The Man hates it when someone wins so much the other people don’t even have a chance, but this guy… he really kind of likes him.

It’s not because Mr. Jackson is very sociable or says clever things or is funny. In fact, he’s not. I have a sneaking suspicion he may be on the spectrum. When it’s time to smile, he smiles, albeit a bit forced like every school picture that has come home with The Boy. When he’s in the game, he’s impatient for Alex Trebek to read the next clue. When he’s wrong, he blinks and looks like you just shot his puppy.

And after the show, when the contestants stand on the stage in a semicircle and talk to Alex, he stands furthest away and says little.

Who knows if the guy is on the spectrum or not. I certainly don’t know him as a person. He may just be a bit socially awkward, as many Jeopardy! contestants have been. But I’ve been rooting for him because I find him charming. Not ever having been too socially adept myself, I always root for #teamquirky, because those are the people in this life who will not bullshit you.

So when I read a friend’s FaceBook post where he said he liked Mr. Jackson, found him creepy because he doesn’t blink, but liked him, and saw others responding with comments like “he has a very creepy smile. Something just seems off,” and more comments talking about how he will likely murder Alex Trebek in his sleep, my heart hurt a little.

You assume someone is psychotic because they are not socially adept? People who are different from you make you think something is “off”?

Maybe I would be saying those things, too, if my son weren’t on the spectrum. But I doubt it. Because I was that kid who only thought of the right thing to say after someone walked away. I was that kid who hid my teeth when I smiled (and probably looked a bit creepy). I was that kid who wore a big yellow fuzzy coat to school and got mocked for it (even though it was so cool).

I get so tired of the meanness, the pettiness, the judgy. They say it comes from insecurity. They say it comes from ignorance. I think it comes from laziness, bad habits, mediocrity, and the fact that people just don’t grow up anymore.

I said and did stupid things when I was a kid. I was a kid. Then I grew up.

There’s a whole lot of different people on this planet. You can either be open to that difference, or you can be closed to it. Guess which one is more fun?

Under the Surface

Posted on October 1, 2015 by simpleijustdo

Kiddos on the spectrum process emotion differently than us neurotypicals.

“Duh,” you might say. And I would agree, but sometimes I forget how deeply this runs through my own kiddo.

Last week, I got notification from Fantastic Babysitter that they were most likely going to have to put their kitty down. She was getting old and not feeling well, and not getting any better, and she was worried about The Boy. I was too, because sometimes the death of an animal seems to hit him harder than the death of a human being, which is typical for those on the spectrum (“kitty” was his first word, after all).

One of our old kitties who is in kitty heaven now

I approached the subject with him and let him know that the kitty in question would probably be going to kitty heaven soon. He asked why, and I explained that as animals and humans get older, their bodies fail them, and they start to get sick. Sometimes, when animals get so sick, we put them to sleep so they can go play and run and chase mice with their friends in kitty heaven. We talked about how it would be cool for Fantastic Babysitter’s kitty to go play with our old kitties in heaven, and that she would be happy there. He had some questions, and I answered them to the best of my ability. He seemed a bit bothered, but also seemed to handle it with grace.

I reassured Fantastic Babysitter that The Boy was ok, and we were sad for her. It’s never easy to let a pet go, but we had been through it a couple of times, so it shouldn’t be too Earth-shattering for The Boy.

And everything seemed ok.

But then, some other things went wrong in The Boy’s world last week, and the death of the kitty seemed to come back up to the surface and tip the scales, sending him off the edge. You see, taken by itself, the absence of his friend-who-is-a-girl on Friday would have been upsetting, but not on-the-verge-of-a-meltdown all weekend. But add the death of the kitty (which obviously affected him more than I could tell on the surface), and it gets to be too much to process.

Everyone is leaving him, he thought.

And for a kid that actually has been left behind by a parent, any dumba** could see the potential for meltdown.

I’m glad I have enough perspective to be able to understand in hindsight what contributes to his frame of mind. Maybe someday I’ll be able to predict a bit better to help him head off some of these catastrophic feelings.

Always a process, always learning.

The Ex, Fall Plans, and a Boy Growing Up

Posted on September 30, 2015 by simpleijustdo

When the ex cancelled his summer visitation, he said he planned to come and visit The Boy this fall some time, and then asked about Christmas. At the time, I reminded him that he had had The Boy last Christmas, which would mean he would have him for Thanksgiving this year, instead, and then possibly the week after Christmas if we could work it out. He agreed, and said he would let me know about fall plans.

Tomorrow, October begins, and I doubt the visit here will happen. In fact, he texted the other day to explain why we hadn’t received child support in a month, and to reiterate that he was “working on” Thanksgiving. No mention of the previous plan to visit here sometime this fall.

The Boy has been through this enough to know that what his dad says will happen rarely does, but he still hopes. When I remind him that we’ll have to wait and see what happens, “I know, I know, I know,” he says, and goes right on hoping. Usually.

Fast forward to this past weekend. It was a rough one, because the girl upon whom The Boy has a crush was absent Friday. As you well know, when someone is absent from school, it is a sign that the end is nigh, and we all run around screaming at the sky because she has moved away, we will never see her again, and why bother doing anything because there’s no point.

The Man and I were doing our best to cheer him up, offering fun things to do, and being generally silly, when suddenly, The Boy piped up from the backseat of the car (always conversing in the car), “I have an idea!” Usually this means he is starting to come around, starting to make everything ok in his own mind, but this time it was actually a real idea. “We can go to Myrtle Beach and ride the go-karts, and I don’t mind missing school to do that.”

Wait, what?

Did he just say he was ok with missing school? This kid? The one I have had to beg and plead with doctors and dentists for the past eight years just to find appointments close to the end of the school day so I wouldn’t be reminded fortnightly of that one day in February of 2006 when he had to miss school??

But he wasn’t finished.

“And if my dad can’t have me for Thanksgiving weekend, we could even go then!”

…

He actually vocalized himself that his dad’s plans would most likely fall through. And made a back up plan of his own to deal with it.

I think my little boy is growing up.

*tear*

The Spirit or the Letter

Posted on September 24, 2015 by simpleijustdo

This post is almost an addendum to yesterday’s. I got a progress report from The Boy’s science class. He has a B-. Great! Except it’s not. Here’s why: he received 100 percent on every assignment, and a 95 on the one project they have done this quarter. Why a B-? Because he got a 67 on a test last week.

Again, as a teacher, I would look at this student’s grades and say to myself, “Something doesn’t add up here. If my assessment (test) was a true assessment of whether or not this student knows the material, it is not reflecting that accurately. Why not?” In this scenario, either the grading of the homework is not a true reflection, or the assessment is not a true reflection. And when you add in that the project (which more often shows what a student really understands than a multiple choice test) received a 95, you begin to think the fault lies with the test.

After investigating, I found out the test had been modified. Great! Except it’s not. It was only 15 questions. This is a major flaw in test design. If the teacher made it fewer questions to modify it, she has effectively made it harder to earn an A. That’s a problem.

There’s no easy answer here, and I know in this case, at least everyone is trying to help. But. If my son knows the material, a 67 shouldn’t stand in the gradebook. According to the “letter” of grading, he earned it, but according to the “spirit” of grading, it’s not accurate, and something should be done about it. I wouldn’t have let it stand as a teacher (you do have the ability to throw out a test and re-do it…), and I’m not sure what to do about it as a parent, except talk to the teacher, and see what we can come up with. I don’t want to come off as I-know-more-than-you-about-assessment, but at the same time, I’m a stickler for fairness.

What do you think?