What’s in Store for Next Year

Well, I guess I didn’t need all that battle gear for our IEP.  Apparently I had made my wishes clear in the email I had sent to The Boy’s teacher specifying that I did want him to have access to his general ed peers, you know, as in, least restrictive environment?? But there are changes coming for next year.

The progrIEP documentationam teacher will now only be at The Boy’s school part time because they will be spreading her autism knowledge throughout the county, now. In other words, they are no longer funding the pilot program, and don’t want The Boy’s middle school to become a magnet school for kids on the higher functioning end of the spectrum, so they are spreading her too thin to try to knock some sense into the teachers at other schools who act as if they’ve never seen a kid with autism before.  My God be with her, because that will be a Sisyphean task.

In the meantime, The Boy’s day will not look too much different except that his social skills class will be a pull-out from his electives, and combined with the pull-out for speech, he could potentially be pulled out of his elective classes four days out of five for a half hour.  That’s a recipe for some negative behavior, if you ask me, but they didn’t, so The Boy (and they) will have to deal with it.

I mentioned that we will be  building a house in-district, to which they responded very happily, and made it clear that if we were not residing in said house by the time 9th grade rolled around, The Boy would be placed in his current home high school.  NOT GOING TO HAPPEN.  Even if we are not in said house by then.  But I will fight that battle if and when I need to.

I’m crossing my fingers for these plans not to change too much between now and August. I’m pleased I didn’t have to fight, and encouraged by the team in place. Now to get the house built…

Not Easier, Just Different

Mom & The BoyThe other day, I pulled out all of the scrapbooks and went through them, remarking at how little The Boy was, and reminiscing. I think some people look through old photos and are wistful for easier times…

I don’t know about other parents with kiddos on the spectrum, but I don’t miss those times. They certainly weren’t easier.

Back then, I had to deal with diapers, until the age of five.  Now I have to deal with the toilet clogging on a regular basis (Thank you, Intestinal Surgery!)

Back then, I had to deal with The Boy wandering and getting lost in department stores.  Now I have to deal with getting him to get some fresh air and come out of his room.

Back then, he was obsessed with Wubbzy and Mat Man.  Now he is obsessed with Sonic the Hedgehog, and the dome lights of cars.

Of course, our history isn’t entirely one of struggle. Luckily, the blessings of that little Boy continue to make him my joy today.  He is still (even at thirteen!) affectionate, at least at home. He still has a wonderful sense of humor, and is a lot of fun to be around. He is still able and willing to participate in the world around him (as soon as he finishes his game).

Nope, I don’t miss those days — OK, maybe I miss the smell of a baby, the giggle of a toddler, and the ability to pick him up and carry him out if he started fussing. But I don’t miss not having a single clue about autism, or a single person to talk to about it. I don’t miss the what-ifs and constant worry that is only lessened with experience and time.

I’m not saying it’s easier now.  It’s just different.  And now, even if I don’t have all the answers, at least I have a clue. ;)

Zondle: A Great Tool for Summer Learning

One of The Boy’s deficits in his learning has been multiplication tables. As with most math concepts, he really has no interest, ergo, no motivation to learn these, and it is now hindering him from getting further (i.e. up to grade level) in his math class.  “We’re doing algebra!” he reported a few weeks ago, yet he struggles without a printed chart to reference.

I asked him if this was something we could practice this summer, and surprisingly, he said, “That sounds like a good idea.” Maybe he is feeling unprepared for what’s next, and would like to feel more confident – who knows! But since he agreed, I’m going to run with it.

So along with all of our other summer plans, I am going to expect him to practice some multiplication facts every day.  How? Using Zondle.

The Boy loves his iPadZondle is an online tool that teachers use to get kids excited to practice skills on the computer.  While they practice, the opportunity to play some games pop up as a reward for correct answers, and it seems like it was made for kiddos with attention issues, and who need motivators to complete work. The best part is that you (the “teacher”) can keep track of your “student’s” progress. Did The Boy practice his 8s today? Well let me just open up my online gradebook… Why yes!  Yes, he did.  And he got them all right!  It even builds in an additional reward system. You can award badges, and even”zollars” which they can spend on whatever reward you’d like to offer.  Three days in a row with zero mistakes? You earn 300 zollars which means we go for ice cream after dinner.  Or whatever!

You do have to sign up as a teacher (but we’re all teachers, aren’t we?), and you do have to set your child up with an account if they don’t already have one at school.  Then you have to put your child in your “class”, but once you have that set up, you are golden.  You can browse other assignments submitted by teachers so that you don’t have to re-create the wheel, and you can even modify them to fit your needs.

I encourage you to check it out if you’re not familiar with it.  I’m finding it a great resource, one that teachers and parents can both use, especially those of us who will not be home with our kiddos this summer!

Conversation Starters, Spectrum Style

Our kiddos on the autism spectrum need practice with social skills.  I tend to let The Boy relax when he gets home because I know he’s worked hard all day, staying quiet when all he wants to do is make silly tuba noises, paying attention when all he wants to do is draw, and doing his best to get his work done all damn day.

But, neither does he get a free pass.  We still have homework to complete and projects to do at home. And summer is not a free pass in this house, either.  Especially if there is no camp.

I have always taken summer as a wonderful opportunity to target areas in my own learning, or develop new ways of doing because we run out of time during the school year.  This is so ingrained in me, that I’ve been planning with The Boy for all of the areas we can practice skills because we just don’t have time, and The Boy does not have the energy or patience after a long day of school.  I was reading a blog post on Momastery.com I found through Pinterest that looked like an activity that had potential not only for social skills and conversation practice, but could also provide an opportunity for me to get inside The Boy’s head a bit. The Holy Grail for autism parents.  But as I read, I realized it wouldn’t quite work for us, because open-ended questions often do not get answers from The Boy.  There are just too many possible answers, and he freezes.  He needs selections to choose from –  multiple choice, if you will. And then I remembered this other game of question and answer, a get-to-know-you game where possible answers are provided…

We’re pretty used to modifying activities and assignments around here, so I’m sharing with you an activity (free printable) I developed, “Planting the Seed – Conversation Starters for Kiddos on the Spectrum“.  Check it out, download it, tailor it to your own kiddo and then come back and let us know what you thought and how it worked.

dandelions_black

Escalating the Situation at 30,000 Feet

aircraft-airplane-flying-2105If autism is on your radar, you are now aware of the recent forced deplaning of a family of a girl with autism by a United Airlines flight crew.

From the reports I have heard, including the mother’s own statements, it didn’t need to go down like that.  The way it was handled increased the stigma of those on the spectrum, and created fear where there wasn’t any previously.

I think Mom, already in high-anxiety-panic mode, and trying to avert a meltdown tried to get some help, and used a poorly phrased warning to encourage the unhelpful and apparently untrained flight staff to be proactive. Unfortunately, it may have sounded like a threat, and anyone who flies with any regularity knows that any possible threats are “handled” immediately, with questions only asked after the fact.

And let’s not even go there about her being unprepared. Autism moms are not machines, and there are times when we are caught unawares by our kiddos. It seems that she did the best she could with what she had at hand. And asked for some warmed up rice.

I think the flight staff who is trained in how to de-escalate situations utterly failed in this instance. Maybe Mom came off as “that” mom, the demanding one, and they responded with what many of us in the service industry do when customers start to get snippy and demanding. We slip into, “I’m sorry. That’s our policy,” because we can, and we take a secret glee in being unable to help someone who is so clearly trying to abuse the system.  But they failed to recognize that this was not an unhappy and demanding customer, this was a mom making a plea for the sake of her daughter and the comfort of the other passengers.  They failed to listen when she said her daughter was autistic.  They failed to do their jobs and do what they could to diffuse the situation.

They brought her the rice and probably immediately went to the captain, reporting a threatening passenger because they could, and because that would teach her to be demanding and make threats on a plane.

And the captain, trusting his staff, made the call.

But even he failed to do his job and investigate any further before making that call.

The flight staff failed all of their customers. They failed to listen, they failed to be compassionate human beings, they failed to diffuse the situation.  But more than that, they violated this young person’s rights.

So my personal take is that yes, this flight crew needs training about passengers with special needs, as well as training in disability rights.  (Many flight crews do – I can tell you stories about the many, many flights I’ve taken with The Boy by myself.)  But they also need to go back to square one and be retrained about their primary job in that airplane – de-escalating any potential situation.

The Times, They Are A-changin’

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.

New Beginnings

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

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.

plug and playAnd 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

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. :D

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?

DIY Erin Condren Stickers using Picmonkey and Pinterest

If you have an Erin Condren planner and are on Pinterest, you’ll find lots of stickers to purchase out there, but they can get expensive, and they may not say just what you want them to.  A pack of stickers from a craft store that are not even sized to fit the squares in the Erin Condren planner can run you five or six bucks, and to me that’s a lot to spend on something that’s not quite right.

While on Pinterest, I found this handy post on how to use Picmonkey, a free online photo editing tool, to create your own stickers.  Ms. Marcia Beckett does an excellent job explaining how to re-purpose Picmonkey to make a sheet of cut-yourself stickers.  And luckily, I had purchased some full-sheet sticker paper from Staples last fall.  A package of that can get expensive, too.  But with coupons and watching for sales, I think I got mine for about $12, and it has lasted me quite awhile.

But I didn’t want any old random stickers.

Like many people, I have a board on Pinterest with Quotes that resonate with me, some funny, some inspiring, and these are what I wanted sprinkled through the pages of my planner.  I googled to see if anyone else had done this before, and couldn’t find exactly what I was looking for.  I decided to play around with it myself. Here are the steps I followed:

1.  Open Pinterest, and find the pins you want to make into stickers. I recommend pins that have a lot of space on each side, and are more vertical than horizontal, but you can play with it yourself to get the look you want. Once you click on your pin, right click on it to save it as an image.

pins into stickers

2.  Open picmonkey, and follow the instructions in Marcia’s post above.  You can add more pictures by dragging them onto your layout, and waiting until a grey area appears.  Then simply drop your picture.  You can also resize them by dragging the sides of each picture you have placed.

3.  I would recommend putting 16 pictures on an 8.5 x 11 page to get close to the size of the boxes in the Erin Condren planner.  You can eyeball the sizing to get it fairly close to the right proportions.

Pinned Quotes into EC stickers

4.  Adjust your spacing to around 127 to get the pictures to the right size on the background page (the icon looks like an art palette on the left of the Picmonkey page).

5. Print and cut out!

pins into EC stickers

A couple of notes:

  • Don’t try to make a buck off of other people’s designs. That’s stealing.  Using these for personal use is one thing, but using someone else’s work to create stickers to sell would not be the right thing to do.
  • I wouldn’t recommend using people’s designs from Etsy or other sites where people are trying to make a living from their work.
  • If you have some pins/quotes that won’t work due to the layout, you can always create a new one using Picmonkey, as well! It really is a lot of fun!

Some Rough Days

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.

crabby

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.”