New Friends, New Opportunities

Posted on September 30, 2013 by simpleijustdo

The Boy and I went over for a “playdate” of sorts with some new friends from our local chapter of the Autism Society. The Boy had gone to summer camp with this boy, and I’ve leaned on his mom quite a bit through our schooling struggles. The boys had a blast – it was very neat to see The Boy getting along so well with kids his own age (or thereabouts), and I was grateful just to have the chance to do it, and the chance for him to make some real friends, something he hasn’t yet done at school.

And I can’t overlook the chance for me to make friends. It can be a bit lonely moving away from almost everyone you know. I still love my friends from up north, but I can’t hang out with them by any means, and so I spend a lot of time by myself, especially being underemployed. It doesn’t lend itself to maintaining your sanity, let’s just say, so it was nice to get out and just hang out with someone, especially someone who really gets what I’m going through right now.

The last time he rode the bus, The Boy was in kindergarten…

One of the things we have been talking about has been a possible switch in schools for The Boy. We’re hoping to get him into a pilot program at a middle school across the county which is aimed at high functioning kids on the spectrum. It happens to be housed where our new friends go to school (across the county, requiring busing), and New Friend’s Mom can’t say enough good things about the special ed staff, who really seem to know autism, front and back. So, we are pursuing it, because his current school is still not following his IEP, and seem to be taking their sweet time even implementing any of the county specialists recommendations.

It would be a tremendous transition, again, and we have weighed that into the decision, but at this point, I strongly feel he is not in the correct placement, and I’m ready to fight to get him into this program (even though I don’t think I will really need to).

So keep your fingers crossed for The Boy. New opportunities may be on the horizon that would be much better in the long run, but may be a little painful at first. Just another day on the spectrum.

Reflections on an IEP Meeting

Posted on September 14, 2013 by simpleijustdo

Our IEP meeting was Thursday, and I felt like we accomplished something, but I’m reserved in my enthusiasm… More of a wait-and-see attitude about it all.

The good:

They agreed to implement his IEP as it came from our previous state, to the best of their ability
They agreed that training for the teachers in modifications and accommodations was necessary immediately
The teachers seemed to support his need for an aide
We finally fixed his schedule so that he would no longer have two math classes
They will be adding ASD-specific life skills to his schedule to replace the math
They will be looking for some sort of computer for him to use for assignment
They will begin to actually implement his IEP, and the ASD specialist commented several times that this was overdue

The not-so-good, of the “shake my head” variety:

The teachers kept bringing up common autistic traits, “He won’t talk to me,” or “He won’t do his work, even after being directed”
The principal asked me point-blank, “He won’t verbalize it if he needs something??”
They are going to do more testing, including a psychological and intelligence (IQ) test, even though he was thoroughly evaluated this spring in his old district, simply because the new state requires these other tests
My concerns about organization help and communication were not addressed as specifically as I’d like them to be
They included a note about following his IEP “to the best of their ability”

I think I was heard, I think they have a better idea of what needs to be done, I think I’m not “that woman” anymore. I don’t know to what extent they will follow through on their promises, and they have a great deal to learn about autism in general, and my son, specifically.

I hope we accomplished something. I hope…

I Spoke Too Soon

Posted on August 30, 2013 by simpleijustdo

The second day of school, I was working with The Man, helping him finish an interior painting project because I have not much else going on right now. Mid-morning, I got a phone call from The Boy’s school.

It was The Boy’s special ed teacher, calling because he was refusing to do his work… a student interest inventory in math. I told her he had done one for homework, and logically, may not want to do the same thing all over again. After we hung up, I felt a ball of oh-no-did-she-really-just-call-me-about-something-she-should-totally-be-able-to-handle form in my stomach. I felt like I may have been really wrong to feel relived last week.

She called later that evening sounding a bit panicked, listing her concerns:

There was an unplanned fire “drill” on the first day (something was smoking in the kitchen), and his teachers were concerned about his safety during the drill, because he was pacing.
He left the classroom at one point during the day, without permission.
His social studies teacher thinks it isn’t beneficial for him to be in her class because he is not doing the work, and should go to the resource room for that class.
He draws all the time and is not following instructions.

These were my thoughts that coalesced that evening at the conclusion of the phone call…

There was an unplanned fire drill and he didn’t freak out, have a meltdown, or run for the hills. He paced. That’s clearly a win.
He left the classroom without permission only once. Another win.
He isn’t doing the work in social studies on the second day of school. And?… He didn’t have ESY this year, this is par for the course!
He draws all the time in class, and isn’t following instructions… Welcome to my world.

I know not all kids with autism are alike, but I would expect experienced educators to have a bit more of an understanding of the common obstacles to learning for students with autism. I did provide multiple copies of his IEP/Testing packet that includes a rather extensive narrative from his previous teacher about how to get him to participate and do work. The autism specialist, his special ed teacher and I did meet last week, when I talked at length about these things.

You have to have some competency, and if you don’t, you have to use the resources available to you, before you call me in the middle of class asking what you should do.

I didn’t make any friends when I emailed all and sundry in the special ed department and administration stating that he needs an aide, and only has one in one of his general ed classes. Because of that email, though, the county autism specialist spent a day with The Boy and his special ed teacher, and gave her plenty of strategies to use. Since then, I’ve been trying to smooth things over, but this is not going to be easy. And they are going to get quite used to my face, voice, and the “ping!” of my emails…

What I’m Up To

Posted on August 29, 2013 by simpleijustdo

I have an “orientation” at Michael’s (the craft store) tomorrow to become an official employee, so I can start teaching scrapbooking classes. The pay isn’t as good as I anticipated, but I hope it will supplement my other part-time job…

tutoring! So far, I kinda sorta have one student (his mom and I have a game plan, but not a schedule yet), and he has autism – yay! Suffice it to say I could make up to $30 a week all told!! I know, exciting, right? But in about three weeks, once I can get my classes set up and advertised, and parents start to realize their kids need help, I should get some more hours at Michael’s, and I should get some more tutoring students. And it might be enough to make my car payment…

I’m waiting to hear back from the county about whether or not we qualify for The Boy to be on the state-provided health insurance program. Any day now… Nah. More like 30 days from now… Hopefully.

I’m going to be volunteering and helping The Boy’s band director out a couple of days a week. I also told him I could come in when he has a substitute. He thought I might want to be the substitute, and I assured him I did not. If I’m a volunteer, I can get away with a lot more… Heh, heh, heh…

I’m trying to work with The Boy’s school to get his services ironed out. They are NOT right, and I think they have had very limited experience with kids with autism. More on that in another post, but suffice it to say that right now, I’m reading some books from Wrightslaw about Special Education Law. Just in case.

I’m helping my hubby with some of his big projects. We joke that I don’t get paid, but when he makes money, I make money, and this allows him to get done quicker, which means more work, which means more money… you get the picture. Plus I get to spend the day with him, which is nice about 99% of the time 😉

I get to drop off and pick up my kid right from school – no daycare! I’ve never been able to do this, and it’s pretty cool.

So in summation, I don’t have a ton of money coming in, and my insurance runs out this week. But for the first time in about 17 years, I’m able to give thought and energy to my own kid and my own family, and I have the time to do it, and do it well.

Don’t Live in Fear of the Meltdown

Posted on August 15, 2013 by simpleijustdo

I write this with the disclaimer that it is addressed to myself, as well as everyone else living with autism in their household. I am painfully aware that this is an area of challenge for me, and I write this post with the hope that I will refer to it often to remind myself not to succumb…

We bristle when people tell us that our children are “just spoiled,” and rightfully so. The ex was convinced that my “coddling” of The Boy was his true diagnosis, not autism, and that if we just ~~spanked~~ disciplined him more, he would behave “better”. This post is not to suggest that any of us are too lenient on our children. No one knows our children better than we do, with the exception of the team of people that most of us have, the therapists, teachers and caregivers that help us raise our special, special children.

However…

We also pick our battles. And you have to. If he chooses a pink shirt and orange shorts that are way too small, we may just have to go with it because at least it’s not the pajamas he has worn for the past six days. Refuses to eat vegetables? That’s OK for now, because pizza is better than a diet of ice cubes…

But…

Especially as a single mom, I fell into a bit of complacency. The anticipation of a meltdown would influence my decisions too much to the point that I was bending farther than I should. And it wasn’t until I started dating The Man that this was pointed out to me. At first I was furious, thinking he was telling me how to raise my son. But he wasn’t. He was just pointing out that The Boy really didn’t need to sneak that giant sucker into his room to eat right before dinner, and that it really was my job to call him on it.

Oh… Yeah… I’m the adult. (Duh!)

And I have found that if I am consistent about calling him out on little stuff, he is less likely to get really agitated by it. Last night, The Boy’s iPad time limit (instituted until he “pays back” his half of the repair bill) ran out, and he started to raise his voice when I insisted on taking it from the room. It looked like he was going to blow it, but after some (albeit loud) whining, he accepted it without much further ado.

My suggestions are to avoid complacency and shoot for consistency. All kids crave some structure. The more consistently we provide it, I think the fewer big meltdowns occur from being called on what is actually poor behavior. That’s my theory, anyway.

Now if I can just remember this 24-7…

Autism and Attachment to Stuff

Posted on August 9, 2013 by simpleijustdo

Google “Autism and Clothing” and what comes up are links upon links to articles, studies, and blog posts about sensory issues with clothing, and how clothing can be a source of anxiety and struggle for those on the spectrum.

But there was only one link about being emotionally attached to articles of clothing. And it was a forum post from the experts – adults with autism. From my quick perusal of the “research”, it doesn’t seem that anyone has studied this, but based on what I read on this wrongplanet forum post, there seems to be a correlation between a spectrum diagnosis and the sense that objects have “feelings”. Unused, or un-purchased toys may feel “lonely” or “discarded” and therefore need to be saved. Lego towers and models mustn’t be taken apart because that would be “like an execution”. Clothing that has become too small must not be thrown out or donated, it must be kept forever, because it would be too sad, too unbearable to part with it.

Ring any bells?

Sometimes I fall into the trap, believing my child is rational because he usually has such a logical and straightforward outlook. This attachment to things is miles from rational, yet it seems to be so prevalent in those with ASD…

Why has no one studied this? Why has no one examined this and come up with strategies to deal with these anxieties about the feelings of objects? Several of these adults with autism on the forum have even contemplated purchasing extra storage space so they could keep all of these “saved” items! Yikes!

Clothing is one of our meltdown triggers, and I finally came to the realization that The Boy had this irrational attachment when we had a big meltdown the other morning. He reacted to some “missing” (read: donated) size 8 pants (he wears 14-16 now) extremely emotionally, almost as if a pet had died. That’s when I began my Google search.

Today, I floated an idea by him. In the car, I mentioned to him that we could take pictures of the clothes that are too small before we donate them. Sorta like my T-shirt project. That way, he could “keep them” as long as he wished, and could look back on those clothes and the attached memories as many times as he liked, and the clothes themselves could go on to other families and be used by smaller kids. He kinda liked the idea. Which means it just might work…

I’ll keep you posted.

The Fight

Posted on August 1, 2013 by simpleijustdo

Last week, The Man and I had a moment, a disagreement, shall we say. And I wasn’t sure if I was gonna go there, if I was going to share with you about this experience, because, well, some things are private, and dirty laundry and all that. But I decided that sharing the essence of what happened is important because the whole point of this blog is sharing my true experiences as a single mom, now remarried mom raising a boy with autism, and possibly showing others in the same or similar boat that they aren’t alone.

So we had a moment. We were getting ready to leave the house to visit some friends for dinner, all three of us. The Man and The Boy had a disagreement in the kitchen about which lunchable to take with us in case he didn’t like the food being served. The Man got angry and stomped off. I assisted The Boy with his lunchable, got his things together and we went to wait in the car. After waiting in the car for a bit, it was clear The Man wasn’t coming right out, so I went in.

And we argued. And neither one of us was completely rational — I know I was defensive (naturally). The argument petered out enough so that we could go be social with our friends, and over the course of dinner, everything got turned right again. Afterwards, we apologized to each other and talked a bit about what happened, and it was all good.

But I continued to think about the argument, because I had rarely been so angry with The Man. And I wondered at my reaction, and then it dawned on me. The previous day, I had reacted to The Boy much the same way when he refused to leave Grammy’s house at the appointed time, even with the help of multiple timers. I was frustrated and handled it badly — I had stomped off in anger. And that’s OK. Everyone who lives with autism has those moments, where we rebel against this thing that runs our life sometimes, because it’s not fair. We react, lightning-quick, with anger because just for that second our resources of patience have run thin from over-use. We are human.

I had gotten so angry at The Man for being human, for having a moment of weakness, for not being perfect when I clearly wasn’t the day before.

The point is, if you live with autism, and never “lose it”, you need to be recommended for sainthood. I know I’m not a saint, and I know I didn’t marry a saint. And recognizing that, and seeing myself in my husband was a much needed paradigm shift.

Paranoia and Autism

Posted on July 22, 2013 by simpleijustdo

Privacy keyboard (Photo credit: g4ll4is)

One of the issues we have been dealing with increasingly since The Boy hit puberty is his over-the-top need for privacy. He could be watching Spongebob videos on his iPad, but he just doesn’t want me to see what he’s doing. Every time I open the door to his room, he scrambles to hide what he is watching or working on. If he is drawing something (usually a Sonic-related cartoon), I cannot see while he is working on it. Not until it’s finished.

The other day, The Boy wanted to print from his new-ish netbook, and it didn’t have our printer added to its list yet. I knew this was a simple fix, but The Boy was adamant that he knew what I was up to, and didn’t want me to access his computer. I assured him repeatedly that I wouldn’t open his current program, I just wanted to go to the settings panel and add the printer.

He turned into a cornered animal, raising his voice, escaping from me (I wasn’t trying to hold him anywhere, but I was trying to talk to him in one spot), with a few threats and name-calling thrown in for good measure (I was a “liar”). I dropped it for a bit, allowing him to regain his composure, all the while talking to him about the best ways to deal with his anger, and that name-calling was always mean.

And then the switch inside his head got flipped, and he handed me his computer and all was well. Total time invested? About 20 or 25 minutes. I’m glad it ended well, and I can only hope that these episodes will decrease once I prove that I am not a liar, and can be trusted not to invade his privacy. This ultimate need for secrecy is a tough one to get used to, though. I’m still trying to wrap my brain around it.

Statistics

Posted on July 16, 2013 by simpleijustdo

Here’s my take on statistics: they are interesting, but really don’t have any relevance on real life. I mean, in the scientific research community, they are incredibly important, and results of studies with certain data lead to more studies, and that’s how we make discoveries and find cures. I get that. But the funny thing about statistics is that you can manipulate them to say whatever you want them to say. And if I believed statistics from every little study that was reported, I’m not sure I’d leave the house. I’m not sure I would have had children or gotten married.

Statistics are not your friend when you are the parent of a child with autism. They can get depressing and make you quickly lose sight of the most important indicator of your child’s success — your child. He’s not a machine or a robot or a lab rat. There has never been another child like him. So while studies can try to predict everything about your child, they still have no clue. Your child is an unknown quantity, and you and he (or she) will have everything to do with his (or her) success in life, and not much else has any bearing.

Statistics are not your friend when you are getting married (and even a worse friend when you are getting remarried). They strike fear into the hearts of even the most brave among us. But again, the most important indicators of the happiness of your marriage are the two people in it. Nothing else.

So while society may decide that “the odds are against” us, I have decided nothing of the kind. No one knows these people like I do, and no “preponderance of evidence” is going to tell me something I didn’t know. No statistics are going to tell me what is “significant”. This is my life, and these are the people I love.

It’s Just A Word

Posted on July 5, 2013 by simpleijustdo

Still using the “r-word”? Find yourself a dictionary…

Recently, the r-word has reared its ugly head again in my purview. Several weeks ago, I was on Pinterest, and saw a pin with this “joke”: “Sometimes your knight in shining armor is just a retard in tin foil”. Hilarious, right? No. Not funny in the least. And I usually don’t jump on people on that site, because I don’t know them from Adam, and don’t want to get into it with strangers. In my experience, that can get a little scary.

But I noticed that several others were posting comments to the pin that took exception to it, so I chimed in. And a couple of people responded to me, jumping all over me to “get a grip”, “life isn’t always nice”, “people are too damn touchy today”, “get over it”, “cool your beans” and plenty of expletives. Now let me explain that my comment was in no way heated — it was: “Just because it doesn’t hurt you, doesn’t mean it doesn’t hurt someone else.” But I was told to “cool (my) beans” and “get a grip”!

One person responded specifically to me, and in her response, said this: “If the word hurts you, it is because you allowed it to. I am overweight, if I cried every time I heard the word fat, I would be a constant mess.”

So, it’s OK for people to use derogatory language, because I’m supposed to be stronger, and those on this planet with Down’s Syndrome, Autism, Cognitive Impairments, and Intellectual and Developmental Disabilities are just supposed to be stronger, and “get over it”, if the word “retard” hurts them?

Another commenter said this: “Oh goodness it’s a word for crying out loud! I have a cousin with Down syndrome and a cousin with autism and not a single person in my family over reacts over the word ‘retard’ you know why, because we don’t use that word to describe them so why the hell should it be offensive, do you actually sit there and call your mentally disabled children retarded? No? Then get over it!!!”

So, because I don’t use that word to describe my son, it shouldn’t be offensive to me??

Um… What???

I think the people on the wrong side of this, those who accuse us of being the “word police”, need some stronger arguments, because theirs just make no sense. I am not the word police. But I will point out to you when a word you use is hurtful, because I believe people should be nice to each other – didn’t we all learn that in Kindergarten? Because I’m going to give you the benefit of the doubt, that you just didn’t realize you were being mean. If you dig your feet in, because you should be allowed to say whatever you want, you are correct.

You can say anything you want. But that doesn’t mean you should.

If you agree, check out this awesome info-graphic about the word “gay”. We should totally get one of these made for the r-word!