Back to School

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The blog has been quiet this week, and I’m sorry for that. It’s a busy time of year, and I’m sure that most of you are experiencing some of what we are, too.

Most autism households are experiencing anxiety and behaviors right about now, too. Mama Fry from Autism with a Side of Fries is experiencing this in spades right now, and I read her posts and think, “Is there any doubt that our kiddos need ESY?” Come IEP time, I wish we could show the team video of what we experience at home these first few weeks of school. At our house, it includes perseveration about fire alarms and drills, fixation on the time the bus leaves school, and the fact that his middle school email address no longer works. There’s a lot of pacing, and more than a few angry outbursts. And in our case, lots of emails from The Boy at school to me at work, explaining his plans to fix all of his imaginary vehicles because they have all broken down.

In a word, anxiety.

So that when the district insists that he doesn’t qualify for a program to provide him continuity, we can say, “But this is what happens after break. Autistic kids need consistency, and if you offered year-round school, we’d be the first to sign up.”

Good luck to all of you tribe members. It’s a tough time of year.

 

The Truth is

We’ve been settling into our new summer routine this week, as The Boy’s Summer Day Camp run by the Autism Society started on Monday. We are working out our timing and logistics to get him there and get him home, and allow him time to transition. He has been rolling with it.

Until today.

Literally seconds before we were to walk out the door, he complained that he couldn’t find his key.

Uh-oh.

He has a collection of mis-cut keys from the hardware store and he pretends that each belongs to a vehicle that he “owns.” The various vehicles come in and out of favor, but he never forgets one. His pretend vehicle du jour is a Dodge Ram van that has been retro-fitted to be an ice cream truck. And apparently, he misplaced the key at some point between the time he left camp yesterday and the second we were leaving the house this morning. Unbeknownst to me.

90% of the time he has misplace something, he ends up finding it at Grammy’s house, usually under the bed. I tired to encourage The Boy to “look again” at Grammy’s and if he didn’t find it there, to “look again” at Camp, and we would “look again” at home this evening before we determined that it was “gone forever” and he would have to “get a new vehicle”. He insisted he had already looked, and it was gone. (If your kiddo is anything like mine, he scans the room at eye level and if he doesn’t see the thing he is looking for, it has grown legs and walked away. Heaven forbid he actually pick up the myriad things on the floor to look underneath for the missing thing.) He said he didn’t want to go to camp and began making a general ruckus. Then miraculously, the key appeared there at the end of the bed, even though Grammy knew it hadn’t been there before…

The thing is, we can try to prevent meltdowns all we want, but sometimes, they just come flying at you like a brick out of nowhere. And you just have to roll with it the best you can, and try to de-escalate the situation and keep your wits about you, always thinking about the next possible steps. We’re “if-then”-ning in our heads the whole time, instantly coming up with plans b-g just for every contingency. Would it have helped if I had helped him prepare for camp the night before? Maybe. But knowing my kid, even if we put the key in a safe spot last night, that doesn’t guarantee he gets it out after bedtime and moves it. And it doesn’t guarantee that it wouldn’t have been something else he decided he needed at the very last minute this morning.

The truth is, sometimes your best option is to just roll with it and forgive yourself for not having seen the brick before it hit you in the head. Sometimes bricks happen.Keys to the Sonic

Orientation

high schoolFor most, high school orientation is an exciting time. I watched the 8th graders sit quietly and listen to the high school administration and teachers speak in the auditorium, and afterwards wander the halls, almost running at times they were so excited to see their friends and figure out how the building was laid out. During the presentation they were told what classes they would have to take as a freshman, and that they may not got the electives they want because they build the schedule from seniors down. They were told about foreign language, core classes, Career and Technical Ed classes, and counseling services.

Not once did they mention IEPs or 504s.

Few teachers were there, and only two out of the three counselors for the entire 900-student population were there. It was not a night designed to speak to teachers, or counselors, even though they made themselves available in the hallway after the presentation.

I spoke to the band director who had been a no-show for a meeting the previous day during my lunch period (drove 20 minutes to the school, waited 20 minutes while he was in a meeting with the principal, drove 20 minutes back to work). He took the wind out of my sails by saying The Boy may be able to participate in band second semester if they add a second, more remedial band like they hope to, but that was pretty much our only option at this point. This Boy who adores band, probably has perfect pitch, and wants to be a band director…

I attempted to speak to the counselor in the hallway to find out just how all of this scheduling would happen with us, but another parent cut right in front of me, and by that time I was frustrated, tired, and hungry so we walked away, and I allowed The Boy one more stop in our wandering tour before leaving.

A registration form came home two days ago, and since, again, I had thought this would be handled by the IEP, I emailed The Boy’s special ed teacher, the one who coordinates his program and the IEP meetings. She responded that she is on indefinite medical leave and had no idea, maybe I should email Mrs. X…

I asked The Boy how long his teacher had been gone. “Since last week,” he said.

As a result of all of this, I am disappointed, anxious, angry, and frustrated. And my attempt to meet with the director of special education was met with a promise of a phone call. I’m afraid if she does follow through with the phone call today, she may get an earful.

Special Education should not be an afterthought, an attempt to comply with the law. Special Education should not be something separate that isn’t talked about. Special Education should not be a reason to exclude kids.

And I should not have to pull teeth to find out information about my child’s educational experiences and program in the coming year.

This is unacceptable.

Baby, I’m Amazed

We’ve been keeping up with the #keystoindependence challenge, and I have to say in the short time we’ve begun, I have already learned so much about my son.

12933009_738098856325388_789378537205830466_nOn day 2, when I was teaching him about fire safety, I was amazed at how little he knew about what to do in a fire. I know that in his nine years in school, they have had various fire safety discussions, assemblies, etc. But The Boy pretty much had no clue about first feeling the door, and crawling to avoid smoke. Then I was blown away again by how quickly he learned it, and retained it. When The Man got home, I asked The Boy to tell him what he learned, and he did. When I asked him to tell Grammy & Poppy what he learned the next day, he did. No repetition was necessary, no flashcards… Just role play. Amazing.

Yesterday, we tackled changing a lightbulb. I showed him where we keep them and how to check to see if it’s a good bulb or not by shaking it. We went to the office and found a lamp that wasn’t being used. I showed him how to unscrew the bulb, and screw the new one in. I asked him to try and he hesitated to touch either bulb because he thought they were hot. I had to convince him that they were both cold – he had just seen me touch both of them, but still thought he might get burned.

I think as parents we assume our kids know a heck of lot more than they actually do. I think some of us still don’t realize we are the adults, and it is our job to adult now, and teach our kids how to do the same. I think all of this is human nature. I think that’s why we need to challenge ourselves a bunch. I thought this month would be about me teaching The Boy necessary skills, and it is. But he is teaching me so much more, as usual.❤

Keys to Independence Challenge

One of my greatest worries in life is what The Boy will do when I am gone. My goal, and the goal of most special needs parents, is to prepare my son to be the most independent person he can be. We don’t know yet what his living situation will be, nor do we know how and where he will work. But right now, I can prepare him for the basics, and I can do it by introducing him to things adults do every day. Each introduction may or may not be successful, but at least he will have had the experience so that we can build on it in the future.

Here is the Keys to Independence Challenge I mentioned last week.

Keys to Independence Challenge

 

How does this work?

For each day of the month of April, you attempt to introduce your child to the skills above. If they’ve already had experience with it or do it on a regular basis, try switching things up a bit to increase flexibility. If you’d like to document your work with a picture or a status update, you can do so on social media with the hashtag #keystoindependence so people can check it out and get some inspiration.

Is this only for teenagers?

Nope. You can totally do many of these with younger children, with a little forethought. It could just be learning about the skill rather than actually performing it, too.

Is this only for kids with special needs?

Heck no! I know some neurotypical adults who could benefit from this practice!😉

What if we miss a day (or three or five)?

Hey, life happens. Especially in a special needs home. No worries! You can skip it completely, or come back to it in May, if you’d like.  No one is keeping score.

What if my kiddo doesn’t want to do it?

The Boy is of an age where he relishes the thought of being an adult, and having a little independence.  I’ve prepped him a bit for this, but I have some backup incentives, too. Think about what motivates your kiddo and see if you can’t build that into the challenge.

What if I don’t understand what the day’s task is?

Interpret for yourself, or check my facebook page or social media and search for the #keystoindependence hashtag – you’ll see at least my take on the day’s prompt.  I just opened up an Instagram account for this very purpose @SimpleIJustDo! But there are no right or wrong answers here.

What if I don’t want to post about it or post pictures?

No worries! You do you! But we’d love to hear how it’s going for you! If you do decide to post, just include the #keystoindependence hashtag so we can find you.

If you have more questions, feel free to let me know. I’ll be posting about the challenge on my facebook, twitter, and now instagram accounts if you want to follow. If not, I’ll still be posting about regular stuff, too.

As always, thanks for your support, and here’s to an enriching April!

Keys to Independence: A Challenge

Recently, Grammy & Poppy left town for a few days, and rather than disrupt The Boy’s routine, we planned for him to still go to their home after school to hang out until The Man or I could come to pick him up. In preparation for this, I had a spare key made, thinking I would give it to The Boy, show him how to work the lock, and let him practice for a few days. Except that the key I had made didn’t work, and when I attempted to show him, he got frustrated lightning-quick, and didn’t want to try anymore.

We resolved that situation another way, but it has me thinking about all of the things a 14 year old on the spectrum should be practicing for the day when he has a bit more independence. You see, we are both tired after our long days of work, and I don’t push too much at home, especially during the week. Weekends, I ask a little more, and now and then there are certain chores he helps me do. But I know we could do so much more, and work on that lightning-quick frustration level, too.

Planner nerds and Bullet Journal Junkies often have monthly challenges, and the idea is to take something you’d like to practice, like doodling or hand lettering, and do it each day with a guided prompt. You commit to the challenge, you do the prompts, and you share with a special hashtag on social media (and lots of people miss days, or get “caught up” later if they get behind – no worries). I’ve been thinking about doing an Independence Skills Challenge for the month of April, which also happens to be Autism Awareness Month. There will be a list of “prompts,” or specific independence skills to encourage each day or couple of days. I will share more details next week, and I would love it if you would join us with your own kiddos (on the spectrum or not!), but I’m excited, even if The Boy and I are the only ones doing it.

Keys to Ind Chall

Transition to High School: He Has No Idea

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.

IMG_4678I 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

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.

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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.😉

Preparing for High School: Update

high schoolI 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…

Big Stuff Coming This Year

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…