He’s Excited. I’m Scared.

Posted on August 23, 2016 by simpleijustdo

We got The Boy’s schedule finally, and it was slightly different than expected, with no core class second semester and a passel of scary-sounding electives like “Principles of Business & Finance.” I emailed his new teacher with my concerns, and she said those are the career and technical education courses they take as part of the Occupational Course of Study, and that the special ed teachers work closely with those teachers to make sure everything is modified. Seniors get first pick, so there’s not much left for freshman when they schedule them.

Ok. But if you have a 9th grader who still can’t multiply and divide independently?

And the lack of core classes was due to the only male PE class being offered at the same time during second semester, and he can just take Biology when it’s offered again, either sophomore or junior year.

I look at this schedule with these long-titled classes that last an hour and a half, and I know there will be no parapro, and I start to get a little queasy with all the what-ifs racing through my brain.

My constant refrain seems to be “How does this work?” And I have to let go. I have to trust that it will be fine. I have to give this new set of teachers a chance to prove they know what they are doing and that they are professionals.

And while I do that, I am preparing my own “curriculum” of supplementary stuff to help him find some meaning in his day, just in case “Sports & Entertainment Marketing” isn’t quite up his alley. Like maybe a coding workshop, and some time spent feeding some animals at the wildlife shelter.

“Thinking will not overcome fear but action will.” ~ W. Clement Stone

Summer Day Camp

Posted on May 25, 2016 by simpleijustdo

If you follow this page on FaceBook, you probably saw on Monday that we got the notification that The Boy was accepted and placed in the Autism Society’s new Summer Day Camp in our area. I was on pins and needles all day waiting for the notification because there were only 30 spots, and I just knew they would be overwhelmed with applicants. They didn’t seem overly worried, but I was up at midnight when registration went live, just in case. Good thing too, as they ended up taking kids that qualified in order of the date and time of registration!

In any case, it is completely grant funded (in other words FREE), and runs for six weeks, every damn weekday, from 9am to 5pm. Down here in the land of “ESY?? We don’t got no stinkin’ ESY!” this is a golden opportunity. Trained staff, fun activities, 1:1 and 2:1 ratios…

And vans. Six of ’em. To take the kids places.

You see, even though I have the perspective to be able to see how awesome this will be, The Boy still sees it as a change from summers past. Camp Smile, while it was the best we could hope for for the past three summers, wasn’t all that. And he hated it at first because it was so different from the awesome ESY program he had up north. But he grew to love it. And now, another change. So I had to sell it a bit when I told him yesterday. And I opened with the vans.

“What kind of vans are they?” he asked. He was hooked.

Do I know my kid, or what? 😉

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Traveling with the Boy, Part II

Posted on May 17, 2016 by simpleijustdo

We had a great deal of fun. The band director put me in charge of two groups of girls (most of whom are The Boy’s friends), and The Boy. He roomed with me.

Both days were non-stop the entire time. I think everyone would have appreciated one less sightseeing stop in favor of a bit more time to eat and breathe. But we did get to see and experience a lot, and ended up walking the equivalent of 16 miles in 48 hours.

The Boy was amazing. We got to our final destination of the day on Friday, which was a parade at the Marine Barracks – a fantastic experience! – and all of a sudden I realized I hadn’t given The Boy his evening meds, and we were going to be in the stands until after 10pm. He was also sitting away from me. I could clearly see him, but what if something happened? What if he got upset for some reason? Would it become a national security incident? Should I alert one of the very nice marines that he has autism? I did nothing, but watched him like a hawk, body taught to spring into action if necessary. He watched and enjoyed the whole thing, “conducting” every piece and loving every minute of it. There was absolutely no issue until later that night, when we finally got into our hotel rooms after 12 midnight. He was trying to log on to the hotel wifi without a password, and I didn’t think I knew what it was. The phone was out of order, so I couldn’t call down to the desk, and I reasoned that it was late anyway. I should have known better, but I was exhausted, too. A doozy of a meltdown ensued, and we rode it out. Luckily, it was relatively short-lived, if aggressive. Then I found the password on the envelope our room key was in, let him get on for a couple minutes, and all was well.

He had been “on” for 18 hours, I didn’t give him his meds until late, he was exhausted, and it was the perfect recipe for a meltdown. Unfortunately, I’m not always at 100%, and when I fall down, I can’t expect him to remain standing.

When it was all over, and he was calm, in bed, with the lights out, I talked to him about how proud I was of him, how he had had an amazing day, and that he would have a great day the next day, too. We just had to figure out a better way for him to cope when he gets upset, but that we would work on it together.

The next day, he woke up a happy camper, and we did have a great day. This kid amazes me every damn day.

Scheduled Time

Posted on May 4, 2016 by simpleijustdo

I lost one of my two flute students to gymnastics this week.

When I was a middle school band director, I lost more than a few to hockey and dance.

But when I was a kid, this wasn’t a thing. Sure, kids were in soccer and I even took ballet in kindergarten. But this every-night-of-the-week-for-four-hours-a-night-oh-and-four-hours-on-Saturday-too was definitely not a thing. Neither were the moms who got mad because the rest of the world couldn’t accommodate their insane schedule. “What? You mean I can’t get a dentist appointment at 3am on a Sunday because that is the only time my kids are not in dance/gymnastics/swim/horse back riding/AAU badminton??”

*dragging over large soapbox*

*standing on said soapbox*

When I was a kid, we did this thing called “playing” with the neighborhood kids. We even had a game called “Ghost in the Graveyard” for when we were out past dark – shocking, I know. We rode bikes, climbed trees, ran through each other’s houses like packs of wild animals looking for fruit snacks, and then back out through the other door. I “taught school” to some younger children (for as long as they would stand it) on the hill in a neighbor’s yard across the street. We rode bigwheels back and forth down the street. When we got a little older, we walked across a small field (with garter snakes!) to the convenience store to buy candy.

We were not scheduled within an inch of our lives.

I think today’s parents have control issues. IMHO you should not be involved in any activity which eats up 24 hours of your free time per week at the age of 9. It’s wrong, and there will be long term consequences. Don’t you trust your children to any degree? Do they get any say in how they spend their waking hours?

Autistic kids aren’t usually much for team sports, and for this one small blessing, I am thankful. But even if The Boy were not on the spectrum, I would not be raising my child on scheduled time.

*crawling down off soapbox, albeit ungracefully because I only had the one year of ballet* At the Cape

Spring Break is Here. Woo Hoo.

Posted on April 26, 2016 by simpleijustdo

Everyone loves vacation, right? Everyone loves a week off of school!

Nope.

The Boy in recent years has looked more forward to it, I’ll admit. But the reality is that the slightest changes in routine throw us all off, and Spring Break is a million tiny changes in our routine and a lot of big ones. Normally, I wake up at 6am to do yoga. Apparently the act of walking down the hall at that time of the morning, gives The Boy some sort of pre-wake up call that I wasn’t aware of. Because apparently, when he is on Spring Break, and does not need to leave the house as early, I am still required to wake up at 6am. Grrr.

And someone (I shall not name names) ate two packages of pop tarts (!), at some point this weekend (we usually get breakfast elsewhere), which leaves one to last us until Wednesday. That same someone complained to Grammy that he had not been given breakfast…

That same someone also required umpteen reminders yesterday to get out of bed and get ready to leave. He waited until the last minute, couldn’t find his headphones, and got upset… sigh… (later found under the bed at Grammy’s, just like everything else that gets lost).

He also thinks he can stay up all hours of the night watching movies in his room.

I’m going to wake him up in 14 minutes. That will be 15 minutes earlier than yesterday. We shall see if allowing him more time to procrastinate helps the situation. But I’m pretty sure the only thing that will help this situation is sending him back to school…

Spring Break in an Autism Household looks NOTHING like this...

No News Isn’t Necessarily Good News

Posted on November 12, 2015 by simpleijustdo

Communication from the school regarding The Boy has dwindled down to virtually nothing. And I learned the hard way when The Boy was first in preschool that assuming that no news is good news is never a good idea.

He started preschool at his home school in January after being kicked out of his speech-based preschool run by the hospital. In March, his dad and I went to teacher conferences and asked about kindergarten. The teacher laughed and said, “Oh he won’t be ready for kindergarten next year! We’re going to recommend he do another year of preschool.” She waited 3 months to tell us she didn’t think he’d be ready. We went home and started looking for a house in a district with better schools and a better reputation for kids with autism.

And now, everyone from his school has gone dark… Maybe I’m gaining a reputation for being “that mom” and they don’t want to poke the bear. I don’t know. I do know that the district is depending on a TA with three other children on her load to act as my son’s primary special education teacher. The teacher who teaches his special education math and language arts classes was out for a week last week, but tends to freak out about things that aren’t very freak-out worthy. I’m supposed to get an IEP progress report with his report card, and haven’t yet received one although I’ve had the report card for over a week. His classroom teachers don’t often communicate directly with home, and expect parents to “look online” for assignments, tests, grades, everything. That makes their job easier, and mine infinitely harder (which assignments have been modified, are the due dates and number of questions the same for my kid, or not?). Two of his teachers have started a texting thing, where they will send out mass texts about upcoming quizzes and tests – great! Except the last text I got was on a Sunday, saying there was a test the next day… I was signing his agenda every night, and that is also supposed to be where assignments are written, but it’s pretty blank now, so I haven’t been checking or signing it.

They’ve taken him out of a social skills class (that’s in his IEP), and put him with his TA for an hour at the end of the day. They still call it “Social Skills” but the teacher is listed as his TA (is that even legal? I asked the principal in my last email and she didn’t respond to that question), and from what I can tell there are no other kids in it. They work on getting homework done. I don’t know if the class he left remains, or if they reassigned that teacher. She also used to teach him math, but they took him out of her class for that, as well (and she was a good one).

I’d love to sit down with The Boy’s TA over coffee and just have a heart to heart with her. Let her know that I believe she is the only thing keeping my kid afloat over there. Let her know that it’s not fair for the district to use her like they are. And let her know that she doesn’t have to try to solve everything herself. I think she’s trying to keep me from worrying.

But the lack of communication is making me nervous. Time to investigate, I guess.

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.

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*

I Must Have Jinxed It

Posted on August 26, 2015 by simpleijustdo

Everyone knows that when things are going well, you jinx it by actually stating how well things are going, right? Remember when I posted about how hopeful I was for 8th grade?

Now I’m nervous.

Went to back to school night last week and found out the teacher I left work to meet with the previous week, who would kind of replace his ASD teacher who was leaving the school would in fact NOT be teaching him anything. He also didn’t have art on his schedule, and no one knew who his homeroom teacher would be.

You think kids with autism have a hard time with change, we autism moms have a hard time, too.

Yuck.

Monday, The Boy started the school year, and for the first time since he started school in kindergarten, I felt like I didn’t have a teacher to contact who would know what was going on with him. No one who really had a good idea of the whole package – his IEP requirements, what classes he should have, triggers, calming techniques, how his overall day went… everything. He seems to have a couple of teachers who have a partial picture, and that doesn’t sit well with me.

When he came home, I asked him if he had art, which was supposed to have been added back to his schedule. He said no. And now I’m asking myself, “Is the second day of school too soon to go into That Mom mode?”

There’s so much going on right now, I’ll probably just wait and see before I panic. I sure hope I’m wrong.

An Open Letter to Kids’ Cable Channels (I’m Looking at You, Nick)

Posted on August 11, 2015 by simpleijustdo

Recently, you changed the schedule. Spongebob had been coming on all summer at 7am. And then all of a sudden, it wasn’t.

Can I just ask one thing?

Why is it that you give adults all kinds of warnings when you are going to move an adult show to a new night or time, but you give absolutely no warning to the kids?

Maybe your test-markets are saying to try something new. Maybe you think kids actually want to watch some cheesy disney-esque sitcom at seven in the morning.

All I ask is that you give us a heads up.

When you don’t, we spend a week dreading mornings. The Boy refuses to go to camp or school, or quickly packs up his stuff and takes it out to the truck, insisting that he and The Man leave an hour early because Nick changed the schedule, and Spongebob isn’t even on anymore. Ever.

(And could I even hope to try to find it on On Demand? Nope. Then after a week, it suddenly appeared on On Demand, but 2 of the 5 episodes were in Spanish… So helpful, Time Warner Cable.)

Miraculously, Spongebob came on again at 7am after about two weeks. And then… just as fast, it wasn’t anymore.

All I know is that if NBC did this with Grimm on Fridays in season, or if AMC had done this with Mad Men, they would have a riot at their doorsteps. Why is it fair to do it to kids? Especially kiddos on the spectrum who depend on their schedules to help them make sense of this world. When you change things on them, when they can’t count on Spongebob to be on at 7am like always, this world can be a scary place.

All those child psychologists on your payroll, and not a single one of them could figure this out? You’ll have a much more lasting impact on your audience if you actually treat them like real people.