The St. Patrick’s Day “hat”…

Posted on March 17, 2013 by simpleijustdo

My son remembers just about everything.

A couple of years ago, he made Fabulous Babysitter buy him a St. Pat’s-themed head band with orange pigtails that got some pretty strange looks when he wore it. He was oblivious, of course, but the rest of us weren’t. This is one of the tough parts of being an autism parent (or caregiver, or teacher). We don’t want to deny them anything that makes them happy (at least nothing as benign as this), but we also don’t want them to be targets for the less compassionate public at large.

A few years ago, it was a beanie (complete with propeller!) that The Boy had found around Halloween at a costume store. Harmless, right? Until I got the note home from his teacher that he was being teased, and could we please keep it at home…

And part of me screamed, “No! Let’s concentrate on the teasers and not the one being teased!” while the other part said, “Oh, for sure. I so get it.”

Fabulous Babysitter took The Boy out on Fun Friday, and he wanted to get some St. Patrick’s day “stuff”, and he dragged her from place to place (although she would never call it that), until he remembered the exact store they had purchased the pigtail-headband the last time. And they purchased it again. And again, we ask ourselves – is it better to let him be himself, or help him to assimilate?

Sometimes Still My Little Boy

Posted on March 15, 2013 by simpleijustdo

There are still cuddly days, thank goodness. Today was one. He seemed excited to see me at pick up, and almost shared something that sounded like a good thing. I couldn’t quite get it out of him. I read (in his communication log) he had had an excellent day, and he seemed excited about dissecting owl pellets in class, and even made a connection to the book they are reading that has an owl as a main character. I had recently seen an owl webcam online, and showed it to him when we got home. He snuggled in next to me on the chair, and we watched for quite awhile. When I closed the browser window, he noticed that I had been previewing a cartoon DVD for school, full of old-school cartoons. He asked to watch it, and we spent the next hour nestled together in a blankie, watching Tom & Jerry, and Sylvester & Tweety. It was a fantastic afternoon!

I know these times will come fewer and farther between, so I am so happy when something like this happens out of the blue. My little boy is growing up!

An Apology to Dav Pilkey… Sort Of…

Posted on March 8, 2013 by simpleijustdo

“This is the story about Tippy Tinkletrousers, and how he didn’t really die at the end of the last epic novel…”

So the follow up book to the last Captain Underpants book, which really, really upset The Boy (and I suspect a lot of kids his age), with a rather graphic death on its last pages has been released (Captain Underpants and the Revolting Revenge of the Radioactive Robo-Boxers). I stood in the store and read the beginning, wondering how Pilkey would get himself out of it. Sure enough, there was an explanation: It was “misdirection”, and weren’t we stupid adults for complaining about something that never happened. In fact, the whole second chapter is about how stupid adults are for squashing all the fun that any kid ever attempts to have, and its because its easier for us adults to yell at kids than reflect on our own sad lives.

I’m not going to get in an offended huff, because just like a lot of satire, there are grains of truth to what he says.

But. I didn’t get offended by that book until my kid got upset. My son was not laughing at the ending of that book (and frankly, I would have found it more than a little disturbing if he was laughing at what was represented as a graphic death). My son didn’t get your joke, and certainly was not familiar with the concept of misdirection.

So, Mr. Pilkey, I guess it was all a trick, and I’m a stupid parent to get offended at what was represented as a graphic death that wasn’t really a graphic death. But, does that mean the next chapter is going to be deriding the stupid kids who were upset by the same thing?

Words and Meaning

Posted on March 7, 2013 by simpleijustdo

Is it time for the soap?

On the heels of “Spread the Word to End the Word” Day, we are struggling with offensive words and their meanings in our own home. We went through this awhile ago, when The Boy wrote down every single bad word he had ever heard, and wow, there were quite a few. It took a numbered list form, and thereafter he would refer to each word by their number (“Mom! That man said #11!!”). He had a classmate a few years ago, also on the spectrum, who had a hard time not using these words, and they sort of “rubbed off” on The Boy. He even ended up creating a few made-up curse words, adding them to “the list”, and then he really confused me. He began to use them in the correct context, using a made-up curse word when angry, but it wasn’t really a curse word, so does that deserve a consequence?? My head was spinning… This lasted for quite awhile, but like all obsessions, petered out.

Nowadays, I’m not sure if he says one from time to time to test the waters, to see how bad they really are. I’m not sure if he doesn’t always remember what’s what, although he is much too clever for that, I think. So I really don’t know why he chose to use the n-word the other day. He claimed to have seen it on a YouTube video, and was reciting a line that he had heard, thinking it was funny. It’s quite possible. But he also somehow knew that it was inappropriate to say, because he anticipated getting in trouble for saying it (which he didn’t, but more on that later). There is a disconnect somewhere in there about bad words, knowing he shouldn’t say them, but still saying them and I just can’t wrap my brain around it.

The other part of this equation, is that The Boy doesn’t realize when he is “talking back”. He is such a good mimic, that I think he has picked up “giving attitude” this way. But he doesn’t know enough to identify when he is doing it himself, because when I call him on “using that tone of voice”, or “talking to me that way”, he has no clue what I’m talking about, and thinks he has said a bad word to make me angry.

Most upsetting to him in all of this is being certain that he has gotten in trouble, and that he will lose friends because he used that word. He sets himself off in a self-judging spiral that will last several days, repeating that he needs me to write him a social story, that if he says it again, he will not be able to go to the computer lab, and whatever other punishment he can come up with that he deserves, because clearly, he thinks he does deserve it. All of us adults are just scratching our heads trying to figure out how to talk to him about it so he will understand.

Peace of Mind

Posted on March 6, 2013 by simpleijustdo

One of the things that I have been most nervous about the move, OK, more like THE ONE THING that has given me a good bit of anxiety is the program for The Boy in the state/county/school where we will be. You just never know what you are walking into, even with a diagnosis and an IEP in hand. You may remember that I had spoken with someone who worked in a county a good bit away from where we were who said they didn’t have a resource room to speak of, and didn’t have any aides in the rooms with the kids. Considering that The Boy spends a good amount in his resource room, I got a bit panicky about what I was going to be subjecting him to.

I had put out some feelers through some contacts with the state Autism Society, and hadn’t really been able to connect with anyone, until this weekend. I finally got in contact with some parents who run the local chapter, and was able to speak on the phone with one lady who was able to give me some insight, at least into her experience. She had also moved into the area a year and a half ago, and has a son that is very close in age to The Boy. She was able to allay my fears a bit, and let me know about how much their little chapter has been accomplishing. Not only was I relieved, but I also began to get a little excited. Here is a group that is actually making positive change in the community for kids on the spectrum, and providing opportunities, and even a summer day camp! YES! Exactly what I was hoping for.

Not to mention that this group is a way for us to meet people like us, which will be one of the most difficult parts of the transition for both The Boy and I, making new friends. I often complain about talking to people on the phone, but this time, I am sooo glad I did.

The Worst

Posted on March 1, 2013 by simpleijustdo

Being a single mom and being ill has to be one of the worst things to experience on the planet. Feeling like crap? Well too darn bad because your child needs to you to take of him like usual, and a child with autism doesn’t have a whole lot of empathy for your situation. As The Boy told me a few years ago, “You can’t always get what you want, Mom. Just like the Rolling Stones said.”

One of the other worst feelings in the world has got to be the panicky feeling you get when you can’t find daycare for your child. Or in my case, evening care. When you’ve exhausted your lineup of babysitters, and you don’t have a choice to miss whatever it is that necessitates a babysitter.

Yeah, I’m feeling both of those right now. It’s pretty far from my happy place. But I’m hoping to spend the weekend recuperating from this cold, and coming up with some magic solution to my evening-care problem.

Calgon, take me away!

Disability and Celebrity

Posted on February 28, 2013 by simpleijustdo

I’m sure you have seen the videos that have been popping up, slightly more frequently in recent years: some student with a disability making an amazing shot in basketball, because the coach told him to suit up for the last game of the season, or the boy with autism who was voted Homecoming King, or the many others that are out there. You can often hear the crowd chanting the person’s name, and screaming wildly when the shot is made, or the name is announced.

My kid is a bit of a celebrity at his school. Everyone seems to know his name: students, parents, even kids who are older and in middle school who live in the neighborhood. We go somewhere in town, and someone says hi to him and calls him by name, and I have no idea who it is, and many times, neither does he. He’s a celebrity, partly because they have such good programs to “initiate” the general ed kids into what their ASD classmates are experiencing, and I think partly because he’s a “6th year” student at his school, having attended the same school all the way through elementary. The longer you stay in one place, the more people with whom you come in contact. That’s my theory, anyway.

But, I watch these videos, and I wonder. I wonder if this “celebrity” is an entirely good thing. I wonder if it would be even better if there was no news story, because it would be a matter of course for someone with a disability to win Homecoming King. It would be a matter of course for kids with disabilities to compete in sports, perform in music programs, do whatever it is that typical kids do, and do it well. And it would be a matter of course for our kids to have friends, rather than fans.

Until that day, I will continue to share these videos and spread the hope that they bring, because they do leave me hopeful, if not entirely satisfied. I am always proud of the person in question, but I am so hopeful for those kids who are “fans” of the person in question. I am hopeful that someday (if they haven’t already), they will realize that this person is real, and not a character. A potential friend, rather than a celebrity.

Another Huge Meltdown

Posted on February 25, 2013 by simpleijustdo

We don’t often see huge meltdowns from The Boy. We are lucky. Yesterday, we paid our dues.

We were at a big show in the downtown-big city, at a large convention center, and after being told he couldn’t do an activity because it was time to go home, The Boy started yelling. I gave my purse to The Man and began walking The Boy to the front of the hall, towards the lobby. He was yelling the whole time, and got away from me a couple of times, but I eventually got him out to the lobby. I don’t know what I expected when I got there, but it surely wasn’t the full throttle, running, kicking, screaming (“I’m going to kill you!”, “I’m going to call the police!”), escaping, knocking-down-signs, knocking-down-mom kinda thing I got.

Yep, I got tossed, too.

The Boy is bigger, although he was plenty to handle the last time something like this happened. I cannot just pick him up (or even attempt to) anymore. At one point, I looked at The Man and said, “I don’t know what to do,” and there was nothing we could do. We let it peter out, got him seated on the floor near the coat check, and then my brain kicked in. He was not listening to me (all I was saying was “stop” because I knew he was too far gone to listen to anything else), so I got on the phone and called people I thought he might listen to. I got a hold of his ASD teacher, who agreed to speak to him, and within a minute, he was ok enough to get his coat on so we could head home.

The Boy spoke to Fantastic Babysitter in the car on the way home for quite awhile, which was an excellent distraction, and had the desired calming effect. When we got home, I let him be for awhile, and then we talked about what had happened. I’m not satisfied that we’ve processed it properly, but I’m going to keep working on it.

The Man and I were shaken, but he was perfect. He held my purse, and followed us (but not too closely!) during the whole thing, even speaking with a few people who were concerned. He said this morning like he felt he hadn’t done enough, but he did — he helped me with the aftermath, my aftermath. I was wrecked, emotional, and exhausted, and he took care of me. That’s what I need from him — I need him to look after me, so that I’m OK to look after my son.

It was an emotional day, but I was proud of myself for remaining relatively calm, and not resentful of The Boy at all. I felt so bad that we had a breakdown in communication, and I felt bad that he lost control. I can only guess what that feels like, and I’m sure I wouldn’t like it. I was proud of him for coming out of it, and I was proud of The Man for how he handled himself. Now I need to go see what I can do about these sore muscles…

Give Me A Break

Posted on February 24, 2013 by simpleijustdo

Still, after six years, I cannot stop the self-recrimination that results from one of The Boy’s meltdowns: “I should have anticipated (fill in the blank)”. It’s a constant subconscious stream of things I should have or could have done to avoid the situation, and why was I so stupid to forget them.

Of course, I don’t really think I’m stupid. But in the heat of the moment, I blame myself for not being capable enough.

So here is my message to myself in the future when I feel this way (feel free to use it yourself, but you might want to insert your own name for maximum effect):

“Hey, Annie! Guess what? You can’t anticipate everything!! It’s not physically nor mentally possible. There’s no way you could know that xy&z were going to happen, causing The Boy to do ab&c. Stuff happens. You just have to do the best you can, try to roll with the ‘stuff’ as best you can, and hope that it will pass soon. Breathe…”

Thanks for letting me get that off my chest. I know I’ll need to hear (read) it in the future. I just hope I listen.

Boy Bonding

Posted on February 20, 2013 by simpleijustdo

The Man and The Boy have a ritual. When The Man is here (or when we are there), they have evening wrestling matches, which are entertainment for everyone in the room. Here, we have an old futon mattress, which we use as a crash pad, and that is our “wrestling mat”. They have three rounds of two minutes apiece, and they try to take each other down (The Man uses this time to try to teach him actual wrestling moves). This allows them to be goofy, and have their own “thing” that The Boy looks forward to all day long. The Boy even dresses like a luchador, complete with mask and sometimes long underwear, and this week, The Man even got into it and developed his own costume. It was one of the funniest things I have ever seen, but I think he would kill me if I posted pictures of him, so you will have to settle for pictures of The Boy.

Without really knowing it, they are also providing The Boy with much needed (and craved) deep pressure, as The Boy is often hyposensitive (the type of kid who crashes into walls and loves water because s/he can’t always feel where his/her skin ends). It’s also a fantastic way for them to relate to each other and build their own fond memories of each other.