Sharing

Posted on March 23, 2016 by simpleijustdo

The Boy is a only child, and as such, doesn’t have much experience with sharing. It’s a common problem for a neurotypical kid, and for one that lacks theory of mind (the ability to understand that others may have different thoughts and emotions of their own), it is even tougher.

This past weekend, The Boy got up earlier than us one day (!) and headed to the living room. He turned on the On Demand feature on our cable and found the Sonic cartoon he was looking for, pressed play, and promptly began recording it within some app on his iPad that records in black and white. This is a new twist on an old interest – making things look like the pre-color era, and has even permeated his drawings, making Sonic look like Steamboat Willy. Pretty cool, actually.

The problem came a little later when we returned from a family outing, and he promptly sat on the couch and started u the On Demand feature again. The Man’s intention, of course, was to come home and watch a little golf (and therefore I was going to take a nap). Because the living room TV is a shared TV, and The Boy was told he had to work out a schedule with others that want to use it, a meltdown ensued.

Time to pull out the board games and practice turn-taking, too.

What can you do? He just doesn’t have much experience with this? If he really had social skills class (like he’s supposed to), I’m sure this is something they would practice. He used to practice turn-taking when he was a little one in speech therapy. All of this has me wondering, what social instruction is he getting, anyway?

A new friend reminded me of those days, hauling him to speech and occupational therapy even before we had a diagnosis. And the speech therapy fell to the wayside when the school began to provide it. He had an awesome speech pathologist in Elementary who focused primarily on pragmatics, but here, his time with any speech (or social skill) instruction has dwindled to almost nothing. Maybe I need to see what insurance will cover and get The Boy back into a social skills group outside of school again… There’s clearly some skills that need practicing.

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.

Up and Running

Posted on March 17, 2016 by simpleijustdo

If you’ve followed the blog, you know that we are building a house primarily so that The Boy can attend high school with the friends he’s made in middle school. Since his program was dissolved, he would have to attend a high school with strangers if we did nothing. Coincidentally, building a house basically on his own has been a dream of The Man’s forever. He has done enough reno to understand how houses are put together, and he has enough contacts in the industry to get licensed professionals who are also friends to do the things he can’t do (like wire and plumb the house).

Well, it’s been a tough fall, dealing with a less-than-scrupulous contractor who cleared a quarter of our acre-sized lot and charged us almost $15,000. If you have no previous experience, this is quite an exorbitant sum for that amount of work, and the guy used to be a friend! We have agreed upon a settlement (in other words, we won that argument), and have been able to move forward with the help of some fantastic weather. We may even have roof trusses up by the end of the day tomorrow.

The Boy and I visited the lot yesterday evening to check it out, and he was delighted to see where his room and bathroom would be, even if he wishes it were upstairs like his friend’s room is at his house (ours will be a ranch).

The Man is working hard, sleeping hard, and probably overdoing it right now, but he is single-minded when there is a goal within reach. He hopes to have us in by the 4th of July. The Boy and I are excited, even though I see the bills on the other side. It really will be a dream come true for us.

And to top it off, when we visited the lot this weekend to make The Man take a break from installing 75 floor joists by himself, we suggested The Boy take a walk around the corner down to the end of the cul-de-sac. When he returned, he said that he saw one of his friends-who-are-girls. I thought he wasn’t quite telling the truth, but not two minutes later, a red minivan came around the corner, with a young teenaged girl pulling herself up to sit on the windowsill of the passenger side to say, “Hey!” and wave to The Boy. We suspect she may live a few doors down.

All kinds of reasons to be excited. 😉

Do as I Say, Not as I Do

Posted on March 16, 2016 by simpleijustdo

We’ve had much discussion over the past few weeks, the school and I, about executive functioning skills and the need for a homework folder so that I know that what comes home needs to be completed/signed/looked at and returned, and the teachers and TA know the same about things that come from home. His teacher offered up a cat folder two weeks ago… via email, and I haven’t seen a single cat folder since.

Last night, while retrieving The Boy’s band music from his backpack, I found a random envelope that said “return by 3/18,” which contained a “Student Dream Sheet” and a “Parent Transition Survey,” which I have filled out multiple times before. The “Student Dream Sheet” is new, however. I took one look at it and immediately thought, “Yeah, right.”

It is a front and back sheet with 15 open-ended questions on it. I get that they can’t supply multiple choice answers because they are trying to understand just what it is The Boy wants to do in his future, but really? Is this the best way? They really think that this is even a possibility for someone who is fairly nonverbal? And it’s “due” in three days?

I don’t even have words at the moment, and I’m not really sure what I’m going to do about it. Yes, he needs to be involved, and ideally answers to “What kind of job do you want when you graduate?” and “Where do you want to live after graduation?” are important for us to have when considering his high school plan. But to expect that I can just sit down with him in an evening and get these answers (no doubt, preferably in full sentences – ha!) belies how little thought, effort, and expertise is behind this whole thing anyway. Shouldn’t an “assessment” for an IEP meeting follow the dictates of the IEP? Shouldn’t educators modify an information-gathering tool to the child with specific special needs?

“Do you have any significant medical problems that need to be considered when determining post school goals?”

Really?

Making New Friends

Posted on March 15, 2016 by simpleijustdo

pexels-photo(1) I wrote recently about how we need to diversify, The Boy and me, and we need to find some new friends. My mom sent me a link to an article on adult friendship recently, which is long, but has a few good insights, even if I didn’t see eye to eye with the author on every point. And the very real truth here is that it’s difficult for kiddos on the spectrum to make friends, and it’s difficult for their parents, too.

In the article, they say that sociologists consider three “ingredients” necessary to form close friendships: “proximity; repeated, unplanned interactions; and a setting that encourages people to let their guard down and confide in each other.” And as adults, we just don’t have those ingredients readily available, at least not as much as we do as when we are in school. In fact, I can’t even think of a setting like the one described above, except for some of the autism society events, like Friends and Fun, where kiddos and siblings come together on one Saturday a month to celebrate anyone who has a birthday that month. Who attends is really a crapshoot each month, as anyone with a kiddo on the spectrum can understand – some days whatever you had planned just ain’t happenin’. But we are able to talk about things we’re going through that neurotypical families just don’t understand, and it’s absolutely OK for your kiddo to stim and script to his heart’s content because everyone there gets it.

The article also mentions that we don’t make the time to maintain and cultivate the types of friendships that are healthy and enjoyable, and that in general, we need to do more of that. So maybe The Boy and I should just plan on going to Friends and Fun every month and make it part of our routine. I’d say it very well could be our best shot at diversifying, and getting some more eggs in some more baskets.

Risk

Posted on March 9, 2016 by simpleijustdo

I’m not going to get into the habit of writing about work, but I wanted to let you know that my new situation is really, really good. And there’s a reason I’m sharing this with you today.

My old job, the one that “brought me to my knees” was a decent paying job, especially for our area. And it took me five months to get it. So for a year and half, I was miserable, thinking I couldn’t leave because I really had it pretty good, except for the screaming and yelling, the unreasonable demands, the constant checking up on the weekends… What does that sound like to you? An abusive relationship? Because it was. I saw it in all of the other people I worked with, too. “It’s not bad all the time,” or “It’s much better when he’s not in the office/ in the winter/ when he’s in a good mood,” or “There’s just nothing else out there.” Scary stuff, right there.

In my big picture way of looking at things, I see a parallel. This is another time in my life where I took a risk and said enough was enough. Life is too short to be so miserable everyday. And it wasn’t pretty. It was hard to be a single mom. And it was hard working retail for minimum wage. I did a lot of soul-searching, and it was painful. There were times in both cases where I thought, “Is this it? Is this all there is?” But there were benefits to both, too. At least I was free from a toxic relationship. At least I could do things the way I wanted to. At least I had an opportunity to learn a great deal. (And I ended up loving being a single mom, except for being lonely).

And then, something wonderful happens that changes your life around. And you realize your instincts were right. There are really, really good men out there who know how to treat others. And there are really, really good jobs out there where you actually get a lunch break with a side of respect. My advice is this: trust your instincts, and take that risk. It may not be sunshine and lollipops immediately, but life is too short to miserable. You deserve more.

In the midst of winter, I found that there was, within me, and invincible summer.

Time to Diversify

Posted on March 8, 2016 by simpleijustdo

Where we live, we have certain stores and activities close by and available to us. We have a local Autism Society Chapter. We have the ocean. We have a Walmart, a Michael’s, and a TJMaxx. We have to drive a little bit to get to a 4-screen movie theater. We have to drive even further for a Target, Old Navy, bowling alley, or an arcade. We have to drive a couple of hours to get to the big city stuff. Like a trampoline park.

We went in May last year, and The Boy had an absolute blast. But he was by himself, and after awhile, you realize it would be much more fun with friends. We talked about inviting his friend C and C’s brother and sister the next time we came, or possibly to celebrate their birthdays, as C and his brother are twins and have their birthday a month before The Boy’s. We talked about it several times with C’s mom, a friend of mine, because we would have to coordinate driving or possibly rent a vehicle big enough for all of us.

A couple of weeks ago, a picture popped up on my facebook feed from C’s mom. They were at the trampoline park. And I was miffed. We happened to be in the same town (two hours from home) that day, and my first thought was that The Boy was left out. It has been one of his most earnest wishes to go there with them, and we got nary a text about the trip?

And I have to admit that I’m still miffed, but I’ve mostly let it go, because it’s life and shit happens, and people aren’t as thoughtful as they could be. But mostly because I realized we need to diversify. The Boy doesn’t have enough friends, and we need to work on that, because depending on one family, one kid, is kind of sad, and rather hopeless when C’s mom is as scattered as she is (it’s not a knock – she really is incredibly scattered and disorganized, and she would be the first to tell you). So we’ll work on this, which is difficult for this introverted mom, but it needs to be done. We can’t live in a vacuum, and The Boy deserves to have some fun with friends.

Dead Computer

Posted on March 2, 2016 by simpleijustdo

Sunday, The Boy had a computer go down.

I can usually get things up and running, or at least figure out the problem. That day, the problem turned out to be a really old computer that just wasn’t going to turn on anymore.

He had found it high up on a shelf in my closet, and had been using it for awhile, primarily to watch videos. Why can’t he watch videos on the portable DVD player he has? You’re asking the wrong person. It was a Gateway computer (I don’t think they even make them anymore, do they?) that his dad and I had bought, possibly before he was even born. It wasn’t even capable of accessing wi-fi. Yep, OLD.

pexels-photo-51415 But to him, it was like watching a friend die, and that core piece of The Boy’s autism, attachment to things, reared its head again. He insisted he had damaged it by dropping it, which he hadn’t. He insisted that it couldn’t possibly be replaced. We kept focusing on the fact that he is getting a new computer – a delayed Christmas present to replace the brand new one that crapped out on us the day after Christmas. He didn’t want to hear any of it. His old friend, the Gateway, was toast, and his world was ending.

The Man turned to me at one point in the day-long drama with utter disbelief that he felt so strongly about a thing. “I don’t get it,” he said. I tried to explain about attachment to things, but it is difficult for us NTs to understand.

I do know when The Boy is hurting, though. We made the best of the day, tried to be gentle and talk him through it. By evening, he was making peace with himself and the reality that the computer was not going to turn on again. And the next day he was searching online for a new one.

It’s not going to go away, this attachment to things. Or maybe it will. I don’t know. It’s hard to predict and prepare for, though. So in the meantime, we just have to try to understand, get some perspective, and be gentle. Poor kiddo.

Executive Functioning Skills Don’t Grow on Trees

Posted on March 1, 2016 by simpleijustdo

Yesterday, the band director’s text alert system let me know that the permission slip for the upcoming band competition was coming home today, as well as something about a spring trip to Washington DC (…yikes…). When The Boy came home, I searched his backpack. Nothing. I replied to the band director’s text – “Could you email it to me?” he said he could.

Last week, the science teacher, from the same text alert system, let me know that progress reports were coming home. Looked in the backpack. Nothing.

And you know that there is still math work floating around in that thing, but I have been told that it is not homework, and that it will be worked on in school, so I don’t touch it.

And there goes last week’s reading log floating by…

_Oh, look, Honey, there's an executive functioning skill tree! Let's pick up some organization, working memory, and focus on the way home! This type of lack of organization has to do with executive functioning skills, often a deficit for kiddos on the spectrum, and many with ADHD. Without assistance and support, and regular lessons and routines to help them get their stuff together, they continue to not bring things home-bring the wrong things home-not turn stuff in.

Considering that The Boy is not verbal about school either, this becomes a real issue. Like when I find out about a band concert two nights before (do his pants even fit??). So, I kinda need to know about any kind of trip that is leaving the state.

Before his program was annihilated, he had an opportunity at the beginning and end of the day to check in with his ASD teacher to make sure he had what he needed, and turn in anything. It is evident that that support has not been replaced.

And I kinda need the staff to do something about this. Yesterday.

Updates and Upcoming

Posted on February 25, 2016 by simpleijustdo

SPRING IS MY FAVORITE SEASON It’s almost the end of February, which means it’s almost spring, which means, it’s almost IEP season. And at our next IEP meeting, I have to let the school know what we’ve decided about The Boy’s future – college or no. I’ve since found that isn’t technically accurate, but it may as well be, with all of the extra work The Boy would have to do just to get into college.

Before that time I would like to meet with the high school band director. I sat with The Boy on Tuesday night as his band warmed up for a pre-contest performance, and listened to him play. And that boy can play. I would absolutely hate for him to have to give it up. I also absolutely hate that this district has decided that they can dictate a child’s program and undermine this little thing called an Individualized Education Program…

A friend and I have long wanted to meet with the director of special education, and I also think it’s high time we do that, to discuss how high school works here, and how it violates children’s rights. I may also mention a certain band director who has thankfully moved on from my child’s life, but is still negatively affecting those of other kiddos on the spectrum – another friend of mine had to pull her son out of his class because he was being yelled at, as in verbally abused. That’s four kids that I personally know on the spectrum who have been bullied by this guy, that he has attempted to force out of the program, and someone at the district level needs to know.

Before I do all of that, I will have to respond to The Boy’s current educators and see if I can help them connect the dots to try to make it through this school year. I intend to do this without calling another IEP meeting, but via email and a simple suggestion to contact the autism specialist if they are struggling with implementing strategies, and understanding how to help him meet IEP goals.

I sometimes wish I didn’t have to work so that I could have the time to properly manage all of this. And then I think, if I didn’t have to work, I would probably homeschool at this point, and wouldn’t have to!