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.

Water Boys

Posted on August 4, 2013 by simpleijustdo

Water has such a great effect on both of my boys.

The Man is a surfer, and has been since he was 12. He starts to get a little cranky if he hasn’t gone surfing in awhile, and just being in the water, doing his thing, does amazing things to his outlook. He needs the water almost as much as he needs air to breathe. That was part of the reason we decided early on that The Boy and I would move down here rather than have him move up north with us. He wouldn’t have survived away from the ocean.

The Boy reacts similarly to the water, like many kids with autism. He has always been this way, and could very easily spend his entire day in some form of water. I’ve written before about the amazing power of water over him, and the immediate calming effects. If he starts heading toward a meltdown, throwing him in the tub for awhile is the easiest way to avert it.

Over the past several years, The Man has been introducing surfing to The Boy, and The Boy loves it. I also love to see them sharing this. The Man is amazingly patient teaching him where to position himself on the board, how to stand, and how to keep his balance.

Today, we went to the beach, and today, The Boy went from riding on his tummy, to kneeling, to standing on the board, all in one ride, and I think this was the first time I saw him do all of this in one motion. And he was so persistent. “One more time, because I wiped out.” I could glimpse him doing all of this on his own in a few years, something I was never sure of before. So often, those of us with kids on the spectrum really can’t see into the future like parents of NT kids can, so when we get a peek like this, it’s pretty exciting.

This makes me a proud and happy mama. 🙂

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.

Doozy of a Meltdown

Posted on July 26, 2013 by simpleijustdo

Yes, we had a doozy the other night. That tends to be the pattern with The Boy – really great for long periods of time, but when we have meltdowns, they are of the knock-down-drag-out variety.

And yet again, I don’t know that what happened the other night could be classified as a meltdown, but it sure left all of us reeling, and thankful it was over in the aftermath.

It started when The Boy’s netbook froze, and in his terms was “broken”, and couldn’t be fixed. He would not allow me to look at it (go figure), even though I knew it was probably a quick fix. He moaned about his computer for quite awhile, continuing to get ramped up. Then he apparently attempted to facetime Grammy, and was unsuccessful, so he threw his iPad…

Yup. Threw it.

The screen already had a hairline fracture from when he accidentally dropped a piece of fiestaware on it several months ago. This latest assault was much more aggressive, and caused MUCH more damage. To the point I had to hide it, because I didn’t want The Boy to get hurt from the glass shards… Bleh. When it happened, he began wailing and screaming, as if his best friend had died.

Needless to say this went on for yet another while (past bedtime), and for many hours, we went through the cycle of me desperately trying to calm him down, getting him calm and leaving the room, and then hearing wailing again after 15 minutes or so. We were doing this until after midnight.

It was important not to get upset with him for breaking it. The last thing he would want to do in the world is break his iPad, so he clearly didn’t understand what would happen if he threw it (or didn’t realize through his haze of anxiety and anger until it was too late). The iPad being damaged and out of commission for the time being is consequence enough. I don’t need to throw my disappointment and additional punishment on top of that.

He is a much happier camper now, as I have given him a clear timeline on how we are going to solve the problem, and have been repeating it to him consistently. It will take a few days for Mom to do research about the details of getting it fixed, no one is throwing it away (he is very scared of this), and then we will make some decisions about how we are going to go about it. He will be working to pay for at least half of the repair, and I have told him that, as well. Never hurts to throw in a lesson about the value of a dollar. 😉

I’m glad he’s feeling better, because my heart hurt for him the other night.

Is it Real Yet?

Posted on July 23, 2013 by simpleijustdo

People have been asking if it has hit me yet, all this permanent change (there’s an oxymoron for ya!), and I have to say yes and no. This house is definitely “home” to us, and I don’t have the feeling that we are returning to our old house or state that you sometimes get after moving. It will help to get out of limbo, and have my new license, new license plate, new name on all of my forms of ID, and the like. But that will take a few more weeks to be sure (*sigh*).

Not having a job, and not having a routine is a little unsettling, still. When The Boy starts school in a little over a month, it will feel much more “real”, I predict. But I’m not usually working in the summer anyway, at least not in the wake-up-report-to-a-building-and-stay-for-a-long-time-doing-stuff kind of way. So this doesn’t feel all that unnatural, either.

I can say that I’m not used to being referred to as “Mrs.” or “wife”, yet, but I love being married to The Man. It’s a little surreal, because the terminology is the same, but the experience is so much better.

The Boy is adjusting well. He has been perusing his old yearbooks a bit, keeping them close, so I know he’s missing what’s familiar. But I also know he’s enjoying having some new neighborhood friends, some freedom to ramble a bit, and is very much looking forward to school starting.

So, it’s real, if a bit limbo-y, but enjoyable all the same. 😉

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.

Deconstructing Glasses

Posted on July 6, 2013 by simpleijustdo

I’m pretty sure no one on Earth will need this tip, but just in case…

I think I’ve mentioned The Boy’s penchant for fake eyewear. He wears them so regularly that his teachers have even been fooled into thinking that they are prescription. Lately, however, he has been preferring the pair of 3D glasses brought home from Toy Story 3, from which he has torn the flimsy black “lenses”. The reason? He doesn’t have to clean them if there are no lenses. (Of course, duh…)

Except that he has outgrown the 3D pair (graduating from the all-purpose “kids’ size” to the all-purpose “adult size” in the interim, I suppose), so they look rather silly. Not a big deal, but we are trying to make new friends in our new community… The Man and I had found a set of three pairs of reading glasses for $3 at the local discount store, and I mentioned it to The Boy, saying we could probably pop the lenses out. He liked the sound of that, so we bought a set.

And he decided he wanted me to pop the lenses out about half hour before we had to leave for camp this morning… Bleh! So I pushed on those plastic lenses until my thumbs hurt, and could only budge them a bit. I tried hot water and then cold water to see if expanding and contracting the plastic of the frames would help, but to no avail. Finally I considered my old friend Goo Gone. I poured some into a plastic plate, and places the glasses, lenses down, into the Goo Gone. After about 20 minutes, the lenses popped out with little resistance. Not sure why this worked, but it did.

So, if you ever find yourself in the position of needing to pop lenses out of some plastic frames, now you know what to do. Glad to be of help 😉

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!

Moving House: The Boy

Posted on June 20, 2013 by simpleijustdo

You are probably wondering how The Boy has done, seeing as autism and any kind of change don’t generally mix well, and moving house is a change in a league all of its own. The short answer is that he has done amazingly well!

Here’s what I think helped:

Grammy and Poppy were there to help ease the transition. The Boy loves his grandparents, and they are a constant in his life. Having them come up to help with the move helped remind him of what he had to look forward to — more time with his grandparents! They are also a little less threatening than Mom, so Grammy helped him pack up his room, which calmed his fears that we were getting rid of all of his stuff!

Preparation. We’ve been prepping the Boy for almost a year, first introducing it as an idea, and then gradually replacing the “Wouldn’t it be cool if…?” with “Won’t it be fun when we…?” We addressed each of his fears as they came up, and made sure not to make light of them. We also spent a lot of time focusing on the positives.

The Moving Book. Anytime I heard him start to fret about the move, I made sure to pull out the moving book (or at least made a point to remember to do that at a quiet part of the day). It really did seem to calm his fears, I think because it worked as a visual cue to address his fears and remind him of the positives, and visual cues really work.

Addressing his biggest fear ASAP. One of The Boy’s biggest concerns was missing his ESY program. As quickly as I could, I found a similar program in our new state. Because of the timing of our move, I didn’t think I’d be able to get him into one provided by his school district, and truth be told, finding one that was going to be the right fit was a bit of a challenge. But in a totally coincidental way, we (I say we because Grammy helped a bunch on this front) found a summer day camp for kids with autism and their siblings in our new area that was relatively affordable and got him enrolled ASAP so that he would have a replacement for the program he cared so much about. He went from whimpering about missing ESY to being excited about Camp SMILE. And because he attends daily, it is a new and immediate routine, and provides him with an opportunity to make new friends (one of his other biggest concerns).

His room is still full of boxes, as most of them are, and he’s been wearing his new Spongebob hoodie just about everyday (he tends toward clothing exclusivity when stressed), but he really has made an excellent transition, and I am so proud and happy for him.

The Moving Book

Posted on June 10, 2013 by simpleijustdo

Tonight, The Boy turned to me and said, “Why do we have to move?”

It just about breaks my heart, because I know on the inside, he is still adjusting to this very big change I have foisted upon him, although on the outside he has been a trooper. And even though we have talked, and talked, and talked about this for a long, long time, I know it is still hard for him to understand.

A long while ago, I came across the suggestion to make a book about the moving process so that The Boy could have a resource to refer to when he was feeling anxious or unsure. My lovely mother helped me flesh out the idea, and even did some of the legwork for me, taking pictures of his favorite places in our new area to include in the book.

My goal with the book was to acknowledge his fear, but accentuate the positive. Tell him what exactly will change, and what will not. Include pictures of familiar things in our new home and community, and pictures of good times with The Man, and with his grandparents.

I’ve been working on his book for awhile, and I shared it with him tonight, hearing his anxiety once again in his honest question. We read through each page, and he looked at the pictures. When we were finished, he was at least smiling. I asked if he felt better and he said he did.

If you’re going through a move with an autistic child, I highly recommend the National Au tism Society (UK)’s page, and a couple of other resources listed below. You can never begin preparing your child too soon, and creating a moving book is one strategy to help calm those moving anxieties that I think will be so helpful!

Tips for Making a Move More Successful – Different Roads

Tips for Moving with an Autistic Child – Elsia R. Sebastian, Yahoo