Halloweekend from Hell

Posted on October 30, 2015 by simpleijustdo

Halloween was never my favorite holiday as a kid, but my kid loves it, so it’s been much more fun over the past fourteen years. We are getting to the point where the trick or treating should probably be winding down, but hasn’t, and I don’t quite have the heart to force the issue.

This weekend, the issue is compounded because of too many opportunities.

Tonight, the high school band is hosting a party to which the 8th grade band members have been invited. I thought maybe this is the one thing we could skip this weekend, but The Boy has other ideas.

Saturday evening, we plan to take him trick or treating in another neighborhood. He definitely won’t give this up.

Sunday evening, his best buddy who is now at the high school is hosting his annual haunted house, and he looks forward to this all year.

Three days in a row and the weekend is shot. I was aiming for compromise and maybe doing to out of three, but I lost the fight, and since Halloween is for the kids, that’s ok. Plus he is actually choosing to do social stuff, and how can I say no to that?

But Mom definitely gets a weekend off next weekend!

Yet Another Schedule Change

Posted on October 27, 2015 by simpleijustdo

It seems that several times a year since The Boy has been in middle school, there has been a sudden inexplicable schedule change. Sometimes it’s the same teacher, same class, but he has been moved to a different hour. Sometimes, the teacher changes, and sometimes, everything changes at once.

I’m not sure why the school thinks this is appropriate, especially for students who are in the special education program, and whose anxiety is triggered by any small amount of change, let alone massive schedule changes. And the changes in this instance affect only special education students in seventh and eighth grade – the very populations for whom you should be striving for continuity!

The principal was explaining to me when we met that there were few on staff who could “get through” to The Boy, explaining that his TA was excellent, and was the only one who could do this consistently. It seems counter-intuitive then, to remove a teacher from his schedule entirely, one with whom he has built a relationship, when up until now she has taught him math and social skills. How does a child form relationships with adults when he doesn’t know how long he will see them on a regular basis?

It may seem small in the whole scheme of things, but moves like this make me question if the decision makers know anything at all about students with special needs, and especially those with autism.

Dances, Dodgeball, and Decisions

Posted on October 27, 2015 by simpleijustdo

The Boy is in 8th grade and has never been interested in any of the school dances – go figure. This past week, however, his school band had a Friday night “Bandathon” fundraiser, which was followed by dinner (pizza) and a dance. Several weeks ago, I asked The Boy if he might be interested in staying for the dance…

“I’ll think about it,” he said.

In Boy-speak, this usually means no, kind of like when your mom said, “We’ll see,” back in the day.

When I brought it up again, I offered to chaperone if he wanted me to, and at that point he said, “I think I’d like to do that.”

!!!

I had no idea what type of dance this would be, so I thought I had better cover my bases, and ended up showing him how to slow dance with a girl in middle school, just in case the opportunity arose and he might want to ask one of his friends-who-are-girls to dance.

After the performance, and the pizza was inhaled, the band director spent the first hour of the “dance” reading off ticket numbers for prizes that had been donated for a raffle. He then turned on his computer, and played three or four songs over the speakers (a la “Cupid Shuffle”), started a game of dodgeball (??), and returned to calling off ticket numbers. That was the “dance”.

The important part was that The Boy had fun. When the kids danced, he made some herky-jerky movements near them. When they played dodgeball, he went out on the “court” and wandered around, throwing a ball when it was handed to him. He got to show some of his hand-drawn pictures to his friends-who-are-girls, and play his DS a bit. He was a happy camper, and that’s all that matters.

Post-Move Update

Posted on October 22, 2015 by simpleijustdo

If you follow this blog, you know that we sold our house at the end of August and moved into a rental house where we will live while we build another small house that is in The Boy’s “district”. In order for him to go to high school with all of the friends he’s made since moving south, we need to live in that area, so we have less than a year to make that a reality.

Moving from our former house was bittersweet. The Man bought that house pretty cheaply because it needed tons of work, and then did all of the work and then some to make it a very nice house, bigger than anything he or I had ever lived in before, and the best part was that it was paid for – no mortgage payment. We were able to remodel it to our tastes, and the fact that it was paid for was what made it possible for The Boy and me to move here. It was our first house as a married couple, as a family, it was where The Man proposed to me… We had lots of really good memories there. It had a beautiful backyard up next to a golf course, so views of gorgeous sunsets, sunrises, and wildlife were common occurrences. The Boy could ride his bike or scooter to his hearts content, and we were glad that he was safe to do that without being bothered.

While our current rental house isn’t exactly as we’d want it, and there is that rent payment hanging over our heads (right at a time when I’m making so much less than I was before), I can’t help but revel in the positives here, as well. I wrote about the tree swing earlier this week, which The Boy adores, and therefore so do I. The lot itself is quite pretty, with well-placed, picturesque trees and lots for the cat to look at during the day. We are placed directly between two churches, so there are no neighbors to speak of, and we are so much closer to civilization… I can’t tell you how much easier it is over here. We don’t have to plan our day around a trip to Walmart – it’s now only two minutes away. We are physically not much closer to Grammy and Poppy, but the fact that you don’t have to cross two bridges and miles of two-lane road to get there make quite a difference in the time. The house itself is the perfect size, just about the same size we intend to build the new house, so it is easy for us to plan and visualize what we’d like to do.

The very best thing is that The Boy loves being closer to his grandparents, civilization, and most of all, his school. The bus used to come pick him up at 6:30am. Now, we have foregone the bus in the morning (alleviating so much stress), and The Man takes him at 7:20am. That’s quite a difference to a tired teenager. One that makes him infinitely happier, and he is not afraid to show it. He has adapted beautifully and I’m proud of him and happy for him, too.

While we could have stayed where we were, I’m so glad we decided to take the risk and do this. Onward and upward!

To Know Him is to Love Him

Posted on October 21, 2015 by simpleijustdo

Halloween is right around the corner, and The Boy, true to form, decided last year that he would be Sully from Monsters Inc. this year. Once he knows what he wants, he doesn’t waver, and even though The Man and I tried to convince him that he would be a really good Dracula, he was certain he wanted to be Sully.

So Sully it is. But I can not and will not buy an expensive costume. We will be making it as we have done for the past few years. And since I am making it, I can steer The Boy toward a more age appropriate costume, even if the subject isn’t very. Thanks to Pinterest, I have found a hoodie-based rendition that The Boy said sounded like a good idea. And now the hunt for cheap supplies begins…

Our kick-butt Sonic shoe from last year’s costume

The Man and I may have tried to steer him to something more age appropriate, but in the end, it’s The Boy’s Halloween, and Halloween is for kids, not for us adults to feel better about ourselves and our children. The choices they make show their passions and creativity, and if we start to make those decisions for them, the light in their eyes gets a little duller.

Yesterday, The Boy came home from school with a cat poster he had purchased from the book fair. I knew it was coming home, and no, it isn’t the typical purchase from a 13 year-old eighth grade boy, but it made him happy. So much so that he taped it to the wall in his room as soon as he put his stuff down. I will never get in the way of him expressing his passion for the things he likes, because that’s a part of him (except for toilets… we have to limit the passion for toilets…). If I start denying that, I’m denying a part of him and it just isn’t right. To know him is to love him, and anyone who does will accept him Sully costume, cat poster and all. Anyone who doesn’t just doesn’t matter.

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.