The Two Hour Delay

Posted on February 10, 2016 by simpleijustdo

You might be an autism parent if...The effects of a two hour delay last all day long Our school year has been riddled with two hour delays. And although my recent posts have been fairly centered on my (adverse) reaction to these, they do negatively affect The Boy, as well. As always, if he can expect it, and be prepped for it, the result is mitigated. But if it comes as a surprise, and is combined with other students being absent, teachers being late… It’s not very pretty, and this was the case this past Monday.

I understand why the district does it. They try very hard to avoid cancelling school because there is no such thing as a make up day in the South. They could very easily build in some days, as this is the second year in a row that we have had a dearth of these routine-upsetters, but that would take forethought and planning… and I digress. The problem is that our district encompasses many long miles of coastline, the east end of which is very susceptible to flooding during heavy rains. There is basically one road going in and out of town, and there is one very small school there. But if those sixteen kids can’t go to school, then the rest of the district has to close too. Even if there’s a chance they may not be able to make it, or the wind will be too strong, or there just may be water over the road… I am exaggerating, but only slightly.

The district needs to take a hard look at their policies. Two hour delays may not seem like much, but it only takes three to add up to a full day of instruction lost. Couple that with the detrimental effect on kids like The Boy (and neurotypical parents like me), and we are starting to have a serious problem.

Monday evening, The Boy asked when the next two hour delay would be. That’s not something I can predict, considering the last two were for no apparent reason. At that time, I pulled up my Weather Channel app, which said no chance of rain until next Tuesday. Now, as weather forecasts are wont to do, this Friday looks like rain and a chance of snow in the AM. If that forecast remains, you can bet there will be a delay. And now our job is to prep for that possibility…

Rigidity Again, but Better

Posted on February 9, 2016 by simpleijustdo

A few weeks ago, I wrote about having my own sort of meltdown when we had a two-hour delay for school for no apparent reason. I resolved at that time not to get stuck again, and the next time this happened, I would stick to my normal routine of getting up at 6am to get myself ready.

It happened again yesterday morning, and I think the fact that the delay was utterly ridiculous added fuel to my fire. But that is another blog post… I did what I had resolved to do, and woke up at 6am, got myself ready. I still had a little bit of a time crunch – I’m really not sure how – but the process of getting everyone ready was much smoother.

BETTERMORNINGS At one point, I was putting together The Boy’s lunch, and The Man stood in the kitchen, a little warily, I suppose, and asked if there was anything he could do. I told him no. And I realized I needed to have a yes answer to that question. I need to allow him to help me when it gets down to it. I was a single mom for so long that I get into that mode sometimes, that I-am-fierce-I-can-do-it-all-on-my-own-and-no-one-can-stop-me mode. But I’m not all on my own. And it’s OK to ask for help. It might take a little training for everyone involved, but it would be better for everyone involved if everything didn’t fall on me in the morning.

And another big part of that is that The Boy can do some, too. So much of what I do for him is just routine left over from when he was eight years old. Now he is fourteen, and much more capable of handling responsibilities. I need to step back and let him.

So, I guess it’s time for a morning training plan. I’ll get that on my list of things to do, and I’ll get back to you and let you know how it goes. 😉

Presumption of Competence

Posted on February 3, 2016 by simpleijustdo

Hands down, the biggest lesson I have learned since moving my son to another school, another school district, another state has been that one should never presume competence with anyone who deals with your child.

Unfortunately, classroom teachers know very little about IEPs and special education law. It just isn’t required of them in teacher prep programming, and if it is, there’s very little of substance that is taught. Many times, when a teacher is in your child’s IEP meeting, they are following the lead of the special education teacher and the administrators. If they do any modifying of assignments, or make any accommodations for your child, it’s usually under the direction of a special education teacher (and many don’t do it at all, and leave this entirely to the special education teachers and even the TAs). This is not the case with all general education classroom teachers by any means, but if you presume competence about special education matters, you will most likely be unhappily surprised.

The same can be said of administrators. Those that know about special education law are in a shocking minority. I worked for and received a degree in school administration, and only a portion of our one law class covered special education law. Administrators rely heavily on their special education teachers to know the law, as well.

Why is this important? When you head into that IEP room, you are relying on the expertise of one person, your child’s special education teacher, to ensure that what is happening that day is legal, and that you’re child’s rights are being met. And if that person isn’t quite up to snuff? Then what?

It is imperative that you learn about what should be happening in that IEP meeting, in your child’s classrooms, in that whole district. Get your hands on anything from Wrightslaw and read it until you know it. Otherwise, your IEP meeting could be “run” by and administrator who wants to reduce your child’s social skills time, and have the TA take him out into the school to practice unlearned skills because that’s what she thinks should happen. (true story…)

With the proper knowledge behind you, you can respond, “But that’s not how this works. That’s not how any of this works.”

Helping Him Connect

Posted on February 2, 2016 by simpleijustdo

The Man and I were grocery shopping this weekend, and if you do like I do, and go on certain days of the week, you tend to notice the same people shopping on “your” days. I also tend to do the shopping alone, because I can get in and out of the store in twenty minutes without the boys, and it turns into an hour long negotiation with them. But this weekend, The Man tagged along, and we left The Boy at home enjoying his independence.

One of the people I have noticed on previous trips is one of The Boy’s friends-who-is-a-girl. She kinda, sorta recognizes me from band events and such, but I don’t often do more than smile big at her. I mentioned to The Boy that I saw her on one of these trips, and so now, when I leave him at home, he asks me to let him know if I saw her.

This weekend, I did one better. After I saw her, I Facetimed The Boy to let him know, and who walked down the aisle right as I was doing it? The girl in question! So I approached her and said, “Do you want to say hi?” and pointed the face of the phone toward her. A bit confused, I saw a big smile break out on her face when it clicked who I was, and who was on the screen. “He’s showing you his cat,” I said. “Awww! How cute! Hi!” she said to The Boy. His weekend was made, and even though I probably confused her for a minute, I helped him make another connection with a friend.

It may not have been the most “normal” occurrence for her on a weekend, but a mom’s gotta do what a mom’s gotta do to help her kiddo make connections and spread awareness and acceptance.

Preparing for High School: Update

Posted on January 27, 2016 by simpleijustdo

I had heard a lot of things about special ed in our high school, the different tracks, what they can take, where they can go with the different diplomas… I wanted to meet with people who could tell me definitively. And I got some answers.

In essence, we will have to choose a track by this spring, which will determine whether or not The Boy ever goes to a four-year college. That’s a tough decision for any parent of a fourteen year old, I think. And I think if they made general ed parents do this, there might be a bit of “education reform” down here.

There is an “occupational” track, designed for kids who are cognitively impaired, and have IQs in the 50s-70s. They are taught in special ed classrooms (segregated from the rest of the gen ed population), and the coursework focuses on work experience, heavily. If we choose this path, he cannot use his diploma to ever go to a four-year college. He may also not be able to take band, depending on when the core classes are scheduled.

Then there is the “future ready” track which is the general ed curriculum. They have a special ed teacher available to be in some of the 9th and 10th grade core classrooms. There is an elective study hall that special ed kids can take to get homework help. And that’s it.

We could start him in the “future ready” and move him to the “occupational,” but we couldn’t do the opposite. It almost feels like they set them up for failure in the gen ed track with little support, and then when they fail, funnel all of the special ed kids into the “occupational” track.

Everyday, special ed kids are denied taking electives in schools across this country, simply because of their disability. But because most parents don’t care about electives, and don’t fight for their kid’s right to equal access to the curriculum, nothing is done. But this is a smaller issue.

This setup, this all-or-nothing choice we have to make… this is something else entirely. I have a friend whose son is more academically age-appropriate than mine, and he is in the “future ready” track at this high school. His teachers don’t know how to modify his assignments, and he has to stay after everyday to get help from his teachers, on top of the “study hall” he gives up an elective for, so that he can have a special ed teacher help him do his homework. Is this really all they can do? Is this really all there is?

Yep, this southern state sure has opened my eyes to the reasons people homeschool.

UPDATE: I just shared an email exchange with The Boy’s former program teacher who said that the part about never, ever being able to go to a four-year college was absolutely untrue. Good news. But makes me wonder what other information the “transition coordinator” screwed up…

My Rigidity

Posted on January 26, 2016 by simpleijustdo

Routines are key in an autism household. If The Boy knows what to expect, we avoid confusion and meltdowns. But it’s a fine line, and you have to feather in some opportunities to learn how to be flexible. Because that’s real life.

Nothing new there.

As I get older, however, I’m finding that I am becoming more rigid. That my anxiety dramatically increases when the routine is disrupted. We had a two hour delay for no apparent reason last week, as none of the east coast brouhaha was headed our way. But I sort of flipped out a little. That meant I had to get two people ready and out the door at the same time – something I used to do with aplomb, but now is not part of our routine. I couldn’t even wrap my brain around it, and was in quite a state until we were out the door. The Boy? He was just fine, of course.

Is it age? Are the routines we have becoming too ingrained? Have I rid my life of so much stress that I can’t handle even a little anymore?

I’m not sure. It can be unsettling, though. And I’m not sure how to “fix” it.

If you’ve experienced something like this, or have any thoughts, please share. I’m listening.

Big Stuff Coming This Year

Posted on January 21, 2016 by simpleijustdo

2016 is going to be a big year for us. I’ve already set up a meeting with our autism specialist and the transition coordinator for next week to talk about The Boy’s transition to high school. Yes, high school.

yikes.

high school

In our state, there are different programs in which a special education student can enroll for high school, and you kinda have to pick which track you’re going to pursue before you even start. The Boy could try to do the full curriculum, but with deficits in math and language arts, I’m leaning toward the track that is labeled “occupational,” which emphasizes work skills and experience. If he wanted to, he could attend a community college with this type of diploma, but couldn’t directly enroll in a university. That’s where I’m leaning, knowing what I know now, but that’s why I want to meet. I want to know the details and make an informed decision. I also want to include The Boy in some of our decision making.

We are also looking forward to building our house which will allow The Boy to go to the high school he is planning on. We’re several months behind due to some unscrupulous contractors (I think they are rather requisite for any home-building project), but are excited to be filling our building permit applications this week. And I can finally start visualizing our new home.

Big changes coming our way. And this little mama is doing what she does best – planning, and planning, and planning…

The Angry Ex, 8 Years Later

Posted on January 20, 2016 by simpleijustdo

numbers-time-watch-white It’s been just about eight years since The Boy’s dad walked out and I filed for divorce. It’s been so long since The Boy’s dad lived with him, I wonder just how much he remembers from those years. He was only six, after all, when his dad first decided to live downstairs, and then decided to move four states away.

For a time, we were both angry. Then I lost interest, and he remained angry. But even if time doesn’t heal all wounds, it does mellow you out, a bit. I’m not going to say he still doesn’t have flashes of angry – it was only a couple of years ago that he cancelled the night before a visitation because he suddenly didn’t like our drop-off arrangements. And I wonder what will happen this spring when he realizes I really mean it that The Boy will not be flying by himself. I saw a flash of the old fire in his eyes when I told him that at drop-off a few weeks ago.

The truth is, probably nothing will happen. He may get annoyed, he may even get angry. But he probably won’t shout at me on the phone or send me a nasty text – both of which he loved to employ in previous years. Maybe he has reached a stage where he is indifferent, as well.

In any case, most of our dealings are what you could call “cordial”. Of course I wish he would make more of an effort with his son, but I realized a long time ago that I have no control over that, and it isn’t worth my energy. As long as it stays that way, “cordial” is just fine by me.

BuJo and ASD

Posted on January 14, 2016 by simpleijustdo

I mentioned recently that I have begun bullet journaling, and it has helped me put one foot in front of the other to get past some pretty dark, helpless feelings this fall. I also belong to a fantastic facebook group with over 14,000 members who also bullet journal, and it has connected me to people across the globe. One of those fabulous ladies is an autism mom in the UK who shared that her son was helping to set the table, and began by making a list of “supplies” he would need – five plates, five forks, etc. – on his iPad. Then, he gathered his materials and put them in the appropriate spots on the table (while shouting loudly what each was). She remarked to him about his list. “Why did you make a list?” He said, “You remember everything, Mom, and you make lists in your journal all day long.”

This story got me to thinking. The reason many of us bullet journal is because it can get overwhelming relying on our brains to remember everything. I, personally, am the type to need to get things on paper, because if I don’t, I will remind myself to do that one thing at least six times in one day – how exhausting, and how almost perseverative (is that a word? it is now…)… Overwhelmed… Perseverating… Indeed, one of the most relied upon strategies for coping with autism is the social story (a list of sorts to describe what will happen), and another is “first, then” (First we will do some homework, then we will have some m&m’s). Maybe, just maybe some kiddos, young adults, and adults on the spectrum would benefit from bullet journaling.

I may try this with The Boy. But my primary purpose with this post is to share an idea, a connection, a possibility. This may be a strategy that could help you or someone you know. Let me know your thoughts in the comments.

The Caretakers

Posted on January 13, 2016 by simpleijustdo

My dad had a stroke in the wee hours of New Year’s Day, and thankfully, as mom put it, I didn’t have to hop on a plane with an infant this time. It was still a series of trying, worrying days. Dad has recovered quite well, but is definitely requiring more care than before.

Poppy and The Boy

This time, I stepped up to make some phone calls and communicate with family. Invariably, it was a woman on the other end of the phone, as we are caretakers by nature. But for each generation, for each branch of a family, it tends to fall on one person’s shoulders. I spoke to my cousin, and my aunt, and before them it would have been my Aunt Mickey, and my Great Aunt Rosie. There are those in whose arms the rest of us seek comfort and care.

I am already a caretaker, and have been since the minute my son was born. I became an even stronger one the day he was diagnosed with autism. I knew when I married a man 17 years my senior that someday I would be his caretaker, and being an only child, I know that I will be taking that role with both of my parents, as well. This is not being a martyr, this is not being a nurse – I’ve already warned all and sundry that I will not do diapers again. I’ve done my time. This is being a steward for the care of others when they are not very able to do it for themselves, and I take this transitioning role on with open arms, a full heart, and a laser-sharp mind, honed by many years already dealing with hospitals, therapists, and educators.

There’s no one more qualified, ready, and willing.

—–

Are you a caretaker? What insights and advice can you share in the comments?