The Times, They Are A-changin’

Posted on May 12, 2015 by simpleijustdo

A few weeks ago, I wrote about how the pilot program that we fought to get The Boy into will not be extended into the high school. And tomorrow, I meet with the IEP team to discuss the plans for next year, after hearing through the grapevine that the pilot program in the middle school is being stripped down, as well. Hence, the fabulous “opportunity” to place The Boy into a resource room for all of his cores! Blech. Do they really think I’m that dumb? But I digress…

Our fear is that without the pilot program extending into the high school, the district will most likely re-assign The Boy back to his home school… Do you remember his home school? I do. It wasn’t a good experience. And if that middle school that he attended for one quarter was any indication, I doubt the high school he would attend would be remotely better.

The Man and I have been in deep discussion and thought ever since these changes became apparent. We’ve been considering options for the future of our little family. And we’ve been property-shopping.

Even before this all came about, The Man and I were keeping our eyes peeled for an affordable bit of property on which he could build us a house. Not hire a builder to build us a house. This would be The Man, building us a house, with the help of some of his friends in the trades. You see, this has been a dream of his for awhile.

So when our hand was forced, and the school district seemed likely to change The Boy’s placement for the worse, The Man and I decided that now was the time to go all in, buy a plot of land, and start building on that end of the district so that, at the very least, The Boy could attend high school with people he knows.

We closed on our lot today.

More change is coming our way, as building a new house means selling our current house, and living somewhere else temporarily until the new house is built. A lot for a kiddo on the spectrum. But I’ve already started prepping him. And he is actually looking forward to being able to sleep in later and a much shorter bus ride. 🙂

Stop & Listen

Posted on May 7, 2015 by simpleijustdo

A common theme here on Simple. I Just Do. is that I forget, sometimes. Your kid gets to be 13 and you feel like you know everything until you don’t. His behavior is wonky, he’s depressed and ready to blow for a week, and you scratch your head and say, “I hope he gets over this thing soon, because I have no idea what’s going on with him!”

And sometimes you lose it. You lose your patience because you are just so tired of hearing the negative, and the same thing every day, the fixations on things that never happened, and the punishments he has dreamed up for himself for poor choices he didn’t make. And you snap, because you just don’t have any more answers, you just can’t understand, and you just can’t listen to one more minute of the perseverations.

And you start talking to him like you would talk to a neurotypical kid who is lying, or has made a poor choice, or is misbehaving, all the while knowing that he is not that kid, and this is not any of those situations. But you do it anyway because you’ve got nothing else.

“No, that’s not true. No, that didn’t happen. I need to understand the real reason why you are upset.”

And you may even raise your voice a little, because he just doesn’t understand you. And you just don’t understand him. And there is complete communication breakdown. And he begins to get teary eyed.

And then he tells you something new.

He tells you he is upset because his plug and plays are not working right, and you remember that you were going to get the crud out of the battery compartment of that one plug and play, like, two weeks ago and you never did.

And so you hug him, and tell him to find his little screw driver so you can take the covers off of all of them. When he brings you the screwdriver, you tell him to get the pack of batteries you bought him last weekend, and you sit down together. And you start working on solving this problem. This problem that he told you about two weeks ago. This problem that you said you would help him with and you didn’t.

This problem that a neurotypical kid would have nagged you about, but that your actual autistic kid did not nag you about.

This problem that seemed small to you, but was probably huge to this boy who couldn’t communicate its importance to you.

You kick yourself because you knew and didn’t know at the same time. You forgot that the importance of things is relative. And he told you, but you weren’t listening.

Luckily, all he cares about is that what’s been bugging him is being fixed. He is no longer negative and depressed, but excited and chatty. Communication breakthrough. Peace restored. And he doesn’t hold it against you like a neurotypical kid might. And that makes all the difference in the world.

A Summer Reading Plan: The Giver

Posted on May 6, 2015 by simpleijustdo

Saturday was National Free Comic Book Day, which I stumbled upon completely by accident. I went on the website to see if any store in our area was participating, and was really surprised to see the book store at the beach listed. We decided to head over there to visit a friend’s grand opening of his new skate shop, and then I suggested we check out the book store. Sure enough, they were making it a big deal, and The Boy immediately found 5 free comics he was interested in, like Spongebob, Teen Titans Go, and a Teenage Mutant Ninja Turtle comic, as well. Then we went to look at the real comics, and found a Sonic comic he didn’t have.

While we were there, I thought we’d look for a book to read together this summer. I had some ideas, and even looked for “Wonder” which Nancy recommended on my facebook page when I wrote about our backup summer plans in lieu of no summer camp. They didn’t have “Wonder” yet, but put it on their list to order, and instead, I went looking for “The Giver” by Lois Lowry, which is one of my all-time favorite books, and perfect for The Boy’s age group.

As we talked about it, The Boy was more than agreeable to reading a book with me this summer, and almost sounded excited about it, which in turn makes me excited. 😀

If there is anyone else that would like to read “The Giver” with us this summer, we’ll be doing some book club type stuff on the Simple. I Just Do. facebook page so we can all participate. I’ll even put the questions in the comments so we don’t have any spoilers if you aren’t quite at the same pace as we are. Even if you don’t have an upper el or middle school kid to read it with, I highly recommend the book for adults, as well. We’ll start about the second week of June. That gives you about a month to get your copy 😉

What do you think? Are you in?

Some Rough Days

Posted on April 30, 2015 by simpleijustdo

The Boy has been having some rough days at school this week. Lots of talk about people being absent from school, and students who have “left” school and may never come back. None of it is true, but he has emotional reactions to these “events” and we are left to try to figure out what is at the heart of it. Add that to lots of perseveration on his favorite topics, and anyone can see he’s anxious about something.

His teacher emailed me the other day commenting that he seems to let one small correction bother him, and then add real infractions to ensure he gets “punished” or sent home, or some judgement that seems worthy in his mind. I let her know that this is a common occurrence at home, as well. Yesterday, I could tell she was frustrated because her email started with “Another bad morning today…” at 10:07am. Rather than respond, I let it ride. She’s young, and doesn’t seem to have the patience the job requires all the time. Maybe she just needed to vent. I wanted to remind her of Rule Number 1: Behavior = Communication, but I didn’t. People don’t like it when you tell them how to do their jobs.

And sometimes he’s just crabby… Kiddos on the spectrum are allowed to have emotions, too.

I’m not sure what’s going on with The Boy, but he seemed much happier yesterday afternoon than he has been in about a week. I hope that whatever has triggered this latest round of rough days has resolved itself, but only time will tell. The Boy and I did talk yesterday evening, and I got the sense that we had turned a corner.

Sometimes we figure it out, and sometimes we let it ride and walk on eggshells for a bit. As our very favorite teacher always used to say, “Tomorrow’s another day.”

IEPs and Trust

Posted on April 23, 2015 by simpleijustdo

It’s IEP season again, and we have our appointment set. We’ve also had a curious email from The Boy’s program teacher. She was excited to tell me that they were going to offer science and social studies in a special ed classroom next year, as well as math and language arts, which The Boy already has. He would be with students who are “academically equivalent” to him, but in classes taught by resource teachers. He would still have access to her social skills class and his elective classes.

Considering the goal of special education is to place students in the least restrictive environment, and considering he would lose virtually all access to his neurotypical peers, I politely pointed out that I did not think this would be an appropriate placement for The Boy. His program teacher cautioned me not to make any decisions just yet, because she felt this would be a good placement for him “due to his academics”. Curious, because The Boy has gotten all A’s and B’s this year. I told her I wouldn’t rule it out, but at this time, I didn’t think it would work for him.

I added a post-script, and asked if she thought the pilot program in which The Boy participates in the Middle School would extend to the high school, to which she replied that she didn’t think so.

Fast-forward to a few days ago, when I heard from a friend whose son is in the program, as well. She said she heard they may not continue the program at all, as in not even for next year’s 8th graders… And the tumbler clicks into place.

Even though I trust this person with my child each day, I cannot take her suggestions to heart because I fear she has been directed to encourage me to accept this put-all-the-kids-in-resource-room plan so that they can both comply with IEPs and discontinue the program. Once we change the IEP to say he needs to be in resource, they no longer have to fund a paraprofessional to be with him in his general ed classes. It’s not what’s best for the kids, but what’s best for the school district.

Silly school district! They continue to underestimate me, because I know the law, and I know my son’s rights. They are going to have to have data to back up that he is “academically lacking” in his general ed classes to show that he needs so much more support as to be placed in a self-contained classroom, and removed from the general ed curriculum. And they don’t have it.

Let the games begin.

Summer Plans Now That There May Be No Camp

Posted on April 22, 2015 by simpleijustdo

The Boy’s summer camp that he has attended for the past couple of summers has lost its home, and I am fairly certain he won’t qualify for ESY this year, magically, even though he has qualified since the age of 5. This leaves us with a bit of a problem. An unstructured summer for a kiddo on the spectrum spells disaster. I would consider enrolling him in a program primarily for neurotypical kids, if I thought for one hot minute that anyone on their staff would have a clue about autism. But since the paid professionals in the area still seem to be clueless, that is a lot to expect, and a lot of money to spend on an experience which could quite likely do more harm than good.

Grammy and Poppy have already spoken up, suggesting a beach day with The Boy each week, to get him out of the house. Excellent. The Boy takes to water like there’s no tomorrow, and thankfully doesn’t try to swim to Africa like he did when he was younger. He can stay absorbed for hours just wading in up to his chest and jumping around, and I think that would provide a lot of sensory input and exercise in his routine.

Ever the planner, I am already thinking of post-high school experiences and what those may be like, so why not use this huge chunk of time in the year, which already has built in traditions and transitions, toward a better purpose. The Boy has an undying love for PowerPoint and it’s Google counterpart, so I’m developing an idea to pay a bit of allowance for “projects” that I plan to give him for those programs. I’ll give him a set of parameters at the beginning of the week, and allow him to develop something for me over the course of the week, building on the idea that you get paid for doing work, and that the work may include doing what someone else wants you to do.

Another thought I had and just haven’t had time to act upon yet is to reach out to some friends in the veterinary medicine business, and some friends who have multiple household pets and offer The Boy’s services as a walker, or a visitor. If we can get him to learn some skills in an area in which he has great interest, he may be able to find something meaningful to do with his life and be able to give back to others.

I’d like him to read a novel this summer, even if it means we read every word of it together, but with enough supports and incentives, I think even this is attainable.

And somehow, we have to get him some time to socialize, which is the hardest part in our county, where it seems like it takes two hours to get from one end to the other some days.

Yet again, I find myself doing things that the professionals handled for us up North. DIY special education programming around here, I reckon…

Acceptance

Posted on April 16, 2015 by simpleijustdo

Sometimes, I look back on my time being a single mom rather fondly. Doing it on my own was something I needed at the time. In many ways it was very liberating, and I bonded with The Boy in a way I never could have as a married parent. And then I remember how lonely it was, as well, when I thought it would always be just the two of us. When there was no one looking out for me besides myself, money was tight, and I had to fill every adult role. Being ill was completely out of the question because there was no one to take care of either of us.

And then I remember even further back when I was married the first time, and one of my friends tells a story about a time soon after The Boy was born when I was so ill that I called her to take me to the hospital. She tells the story because I have absolutely no memory of it (funny how the brain works). Yes, I was married at the time, and when my friend tells the story, she says that when she arrived to pick me up, she watched the ex step over me, lying prone on the floor, on his way out to his grown-man basketball league. I guess I was dehydrated, for which I have gone to the emergency room a couple of times in my life, and apparently he had no inclination to take me to the hospital himself, regardless of the fact that I was very visibly ill, and we had an infant at home.

Some single moms get very vocal and agitated when married moms say they feel like single moms. I’ve been in both positions and try not to judge. Life as a single mom can be very, very difficult, and life as a married mom can be very, very difficult, as well. Both positions can also be incredibly rewarding and satisfying. And unless you are living someone’s life 24 hours a day, you really have no idea of another person’s challenges.

I find the same type of vocalizing and agitation in the autism community on various topics, and judgement all around. Words like “aspie” and “high functioning” can cause full-throated arguments, as can person-first language, vaccines, Autism Speaks, and even the varying parts of the spectrum and who has it “harder”.

I don’t often swear in my writing, but I call bullshit.

Everyone, EVERYONE on this planet has their own struggles, some more visible than others. Everyone also has their own opinions. And there is very little in this world that is truly black and white, right and wrong. Our diversity and duality make us human, and dare I say, interesting. We don’t have to agree to like each other, learn from each other, or coexist. We don’t have to compete for whose life is the hardest – there is no trophy. But I have learned that experience is the best teacher, and if we can be civil to each other long enough to listen to one anothers’ experiences, there is a lot to learn about our kiddos, ourselves, and these interesting people with whom we share this space on Earth.

No Program Extension. Now What?

Posted on April 14, 2015 by simpleijustdo

I found out the week before break that most likely, The Boy’s pilot program for “high functioning” autistic middle schoolers will not be extended into the high school, as we were previously encouraged to believe.

So now what?

He is currently bussed across the district for his program, and has a community of friends in and out of the program. If they do not extend it into the high school, he will have to go to high school here in his own community, where he knows absolutely no one, and if the high school over here is anything like the middle school was… Let’s just say that’s not going to happen.

The Man and I have been looking to buy property and build a house out towards The Boy’s school anyway, but so far have not been in the right place at the right time to make that happen. Moving out that way would make his current school his home school, and the high school I’d like him to go to his home school, as well, but we’ll just have to wait and see. And unfortunately, we only have another year to make all of this happen.

And then I begin to think, “Could I make homeschooling work with a full-time work schedule? Maybe with the help of Grammy?…” I think I’d be killing myself to make it happen, and The boy would miss out big-time on socialization with NT peers, but I’m not ruling it out.

Part of me is saying, “Well, maybe there are decent schools in Florida, where we want to move eventually, and maybe we should fast-forward the timeline…”

Ugh.

Being forced to make major life decisions like this because a school district can’t do the right thing and commit to the needs of its students really bites.

Autism Awareness, Acceptance, and Advocacy

Posted on April 2, 2015 by simpleijustdo

Well, it’s April kids. It’s Autism Something day and month, depending on who you ask. It’s such a controversy in our community, and it doesn’t even need to be.

Yes, we still need awareness, as is evidenced in our daily interactions with people who just don’t get it yet. How? I don’t know. Maybe they live under rocks. Maybe they are in denial. Maybe they are just mean jackholes. I don’t care. But I will continue to attempt to enlighten them about my son and his buddies.

Yes, we definitely need acceptance. Yesterday, you read about someone who screwed up our Friday morning (and added a dose of anxiety that will last for the rest of the school year). She definitely needs to find some acceptance real fast. From kids who bully our kids, to teachers who still don’t know how an IEP works, to potential employers. The world needs to hurry up and get with the program because we are definitely not in the acceptance stage in this society yet.

And yes, we need to advocate for our kiddos, and let them advocate for themselves. Yes, adults on the spectrum need a national platform, and need to be included on the boards of their own nonprofits. They need opportunities to show the world of what they are capable, and the skills to communicate their needs.

So whether you light it up blue, or walk in red, just be yourself in gold, or decorate with puzzle pieces, please realize we can’t do this alone, and we can achieve so much more as a cohesive unit. Let’s agree to disagree on a few things, and consolidate our goals so that we can get to a point where everyone is aware, everyone accepts, and there is no longer a need to advocate.

All It Takes is One Dumb Bus Driver

Posted on April 1, 2015 by simpleijustdo

This past Friday, The Boy was left behind by his bus.

Our outside light was on, and our front window blinds (all three of them) were open. The driver rolled up to our house early, honked once, waited less than 10 seconds, and then turned around in the cul de sac and left.

Recently, when our regular bus driver began to arrive earlier and earlier, we worked out an arrangement with her. She now waits for him, and does not expect him to exit the house until around 6:30am, which has been his expectation and his routine for the entire school year.

When the bus left on Friday, I ran out to the porch, waving my arms, to no avail. The Boy began to get upset, wondering how he was going to get to school. We were in a panic. I called the transportation office who informed me there was a substitute bus driver, and assured me that they would instruct her to come back to pick The Boy up. In the meantime, he had returned to bed, unwilling to go to school if he was going to be late.

At this point, The Man offered to take The Boy to school himself (along with a bribe of a donut) so that he could arrive on time. I gave The Boy the choice of waiting for his bus to return, or going with The Man, and he chose to go with The Man.

When the bus arrived, I went out to speak with the driver. She interrupted me before I could get my first sentence out, was extremely defensive and rude, making faces at me, and interrupting me many, many times. She even challenged the truth of what I was saying, and pulled another child up from his seat to “bear witness” that The Boy was not visible when she was there. I told her the arrangement we had with our regular bus driver, but she seemed much more concerned about whether or not I was accusing her of being late, which I obviously wasn’t. I was shaking by the time I was finished and stalked back into the house.

Incidents like these can not only have immediate and damaging effects (like a meltdown, or refusal to go to school), but they can also have lasting effects on children like The Boy. It will be a long, long time before he can trust that his bus will not leave him behind. Drivers need to have patience with all students, but especially with those with special needs. Would this driver have waited ten seconds after honking and driven off if The Boy was in a wheelchair? Probably not, but she appeared to not have any regard for The Boy’s specific needs.

Everyone employed by the school district that comes into contact with our kiddos should have training about what autism is, the core deficits children with autism have, and how each employee can help students with special needs find success throughout their school day. Anything less is not acceptable.

This is a large excerpt from the letter I am sending to the Director of Transportation, courtesy copied to the Director of Special Education and the Superintendent. I ain’t playin’ and it’s not over if you’re going to be rude to me.