My Autism Insights

It’s been a long and trying week, but not so much that I can’t keep things in perspective!

Today I am thankful for:

1. The support of other parents who recognize the importance of providing discipline and structure to their children.  It can be challenging enough to not be a doormat for your kids some days, but it is that much harder when other people are, passively or actively, thwarting your efforts.  Loving your child does not mean letting him or her run roughshod all over you, and quite frankly, it doesn’t help the kid one bit.  No one else in the real world will put up with it.
2. I am thankful for my Reiki practice.  Although I haven’t done as much as I want to with it, I’ve suck with meditation and balancing practices.  I see a huge difference, especially in my responses to situations that in the past would have made me want to tear my hair out.  Good stuff, that Reiki!
3. I am thankful for Girl Scout Cookies - not the selling part, but just the general yumminess of them. Isn’t everyone?  They rock!

Your thankfulness below, please, and have an awesome day!

image and prompt from Mo of Manic Monday

There are many things I waffle about: what to eat at any given time; which job I want to focus on first; whether or not I want to stay up to watch television after work or just go to sleep like a smart girl.  It’s safe to say that I waffle about almost everything.  Almost.  I can’t say that I’ve ever waffled about feeling a deep gratitude for both of my kids.

I was doing some research this morning and came across a question on Yahoo Answers. A woman was incensed because she was getting calls from her son’s guidance counselor. Why?  Because she’d told him that she wished she’d never had him.  (There was no indication of him having special needs by the way.)  Now, I won’t crucify her here (many of the people who responded to her question already did that), and I can’t say that I’ve ever encountered anyone who would ever say that to their child. But after reading all the responses ripping into this woman, I had to wonder: have these people never had such a thought, at least in the heat of anger or when wallowing? Not saying it’s a good thought to have, and not saying I’ve personally had the thought, but it seems to me that even the best, most loving parent should be forgiven a moment of human frailty - at least if they keep it to themselves?  Even if not about my kids, I’ve had a thought or two that were pretty grimy.

At any rate, I doubt the woman really meant it what she said, and she probably (somewhere deep down) felt badly about saying it.  But a better thing to consider would be if any of us can honestly throw stones.  Something else for me to waffle over.  What do you think?

Prompt by Mo of Manic Monday

Does allowing an individual with obsessive tendencies to enjoy the object of obsession to a limited degree add fuel to the fire of said obsession? This is what I ask myself all the time.  Let’s use Pokemon as a fairly harmless example.

Gus loves Pokemon.  He’s got encyclopedias of Pokemon memorized and can tell you anything about any of the creatures. Sometimes when he lacks focus in school, the use of Pokemon as a teaching tool has proven effective (add these numbers and find the number of Pokemon in this region).  But there’s always a downside.  Even the most contained fire, if given the right opening, can consume a forest.  He will play his Pokemon video game to the exclusion of many other things, including outdoor activity when the weather permits.

Now, am I really all that concerned about Gus and Pokemon? Not now.  But what if it goes on for the next, oh, 20 years or so?  Is there a point where someone should step in and say, “this is no longer appropriate, so stop now.” And if there is such a point, it would be great if I could get one of those postcards like you get from the dentist when it’s time for a cleaning.

Left field is looking a little too attractive today, so I’ll end here.  Have a great Monday!

And for more on obsessive tendencies, check out Bonnie’s post at Autism Family Adventures .

And later this week, I’ll have a guest post from my buddy at General Hysteria .  Stop by ad check out what she has to say!

Here’s what I find ironic:

Parents of autistic kids will spend a great deal of time teaching their kids social skills for a variety of situations.  For example, when we take the kids to a restaurant, there’s always some discussion of the restaurant rules: using inside voices, staying in our seats, using utensils…It’s a good bit of work, but we do this because we want our children to be able to function in a less-than-tolerant society.

Why then can we go to a restaurant and see a group - 2 adult women and 4 children under the age of 10 - where the children wandering around the restaurant for the majority of the time they were there?  They weren’t being exactly obnoxious, it just seems like life has thrown us yet another double standard.  They didn’t get any funny looks (that I noticed) for wandering around tables where people were eating…standing in chairs…climbing on the fireplace…

And yet my child is the one labeled with the “problems.”

“Does that seem right to you?” ~Jubal Early, Firefly.

Mary at Bon Bon Gazette and the NJ Moms Blog did a couple of posts on this on this topic that I saw last week, and then I read this comment from a reader to my weekend post:

“I also have a son with aspergers syndrome. Justin is 12 yrs old a very quiet pre-teen.  Who is a 7th grader in Jr. High. My main concern is that the kids at his school has started seeing him as an “easy target”. Justin won’t tell on these kids because he doesn’t want to get people in trouble. He is such a kind hearted boy and wouldn’t even hurt a fly. How can I get him to understand that what these kids are doing to him is very wrong and he needs to get help from an adult to put a stop to this once and for all? Please somebody help me and tell me what I should do as a parent!”

It’s disturbing that bullying is such a prevalent reality for so many students with special needs.  With most kids on the autism spectrum, they may not look any different from their peers, but they often exhibit behaviors or a lack of social savvy that makes them easy targets for bullies.  The harassment typically becomes a serious issue around middle school age and can last through high school.  A conversation with Gus’s counselor revealed that students on the autism spectrum often don’t understand that they are being mistreated; they can think the abusers are their friends and that must be the way friends act.  She mentioned a high school Aspie who would do some pretty outlandish things at the urging of other students because he didn’t realize they were mocking him.  Another child began to view the physical abuse he was receiving at school as a ‘ritual’ and it fed into his perseverative tendencies.  He would actually seek out the bullies because the abuse became his pattern until he was hurt and the school nurse intervened.  The victims will usually not speak up for themselves, and the bullying may not go unchecked until there is some severe incident or the victim’s behavior begins to change and a parent, teacher or counselor takes notice.

Schools are becoming more responsive to these incidents because the situation has gotten so bad.  Although there are federal laws (Rehabilitation Act of 1973, Americans with Disabilities Act of 1990) protecting the disabled against harassment in any educational facility that received public funding, on a practical level, it doesn’t offer much in the way of prevention.  So what can parents do to protect their children from being tormented by their peers?

Be Aware

You can’t be with your child all the time, but you can be aware of any changes in your child’s behavior or appearance.  Notice if your child is coming home dirty, with torn clothing or with bruises.  Changes in behavior may include reluctance to go to school, an increase in behaviors that indicate distress (like stimming), changes in sleeping or eating, flinching, aggression or out-of-the-ordinary withdrawal.  Also, don’t be afraid to ask questions of teachers and classroom aides to stay on top of what goes on during the school day.

Your IEP as a Tool

While you can’t directly have antibullying written into your child’s IEP, there are goals that can be written in to help reduce the risk of bullying.  Goals that specifically work to increase social skills like recognizing social cues, assertiveness, or avoiding and handling bullying can be helpful.  In addition, it may be possible to request services to prevent bullying such as staff monitoring in areas where bullying is likely to occur.  If bullying has or is occurring, counseling support should be made available.

Educate the Peers

Emily at A Life Less Ordinary has had to deal with bullying and came up with a fantastic idea to educate her son’s peers about her son so that they would have a better understanding of some of his behavior.  If Bullying Prevention programs at schools took a similar approach and educated their students about autism and other special needs, it might help reduce the ‘otherness’ of the special needs students.  See what your child’s school or district might have in place for conducting this kind of diversity training.  If nothing’s available, be proactive and try to get something started.  And remember that kids who are neither bullies nor victims can play a role in bullying prevention as well by being encouraged to take a stand against it, as noted in the Autism Asperger Publishing Company’s Winter 2006 Newsletter, which was devoted to the issue of bullying.

Who Should You Take the Issue Up With?

As much as parents want to protect their child’s well being, it is possible to make the matter worse if you address the bully directly – it can just cause the situation to escalate.  But you can’t ignore it either.  Likewise, contacting the bully’s parents might have an adverse effect.  If the incidents occur in school, start with your child’s teacher.  If that doesn’t help, try the school principal.  In severe cases, or situations where the school administration can’t control the situation to keep your child safe, remember that the law is on your side if you have to contact local authorities.  If you still don’t feel that your child is safe, home schooling may be an option to consider, at least for a while.

Other reading

Some available resources:

Preventing Bullying of Children and Youth on the Autism Spectrum

Bullying (and Asperger’s Syndrome)

Bullying Among Children and Youth with Disabilities and Special Needs

NAS: Bullying: A Guide for Parents

And The Gray Center has several books and a DVD available on the topic of bullying as well.

If you have anything to add, or if I’ve misstated something, by all means, add to the discussion of this very important topic.

image by Erik Drooker

This time of year, with snowstorms and vacations and being cooped up together, kids are bound to get under each other’s skin.  Gus and MM are no different.  We’ve been home together since last Friday and I’ve lost count already of all the petty arguments that are so inane and incoherent I can’t even tell what they’re about.  Last night was yet another of those lovely shouting matches, this one brought on by MM playing some repetitive made up game (loudly) and Gus being tired and belligerent.

Usually, I’d just separate them and get Gus to bed as quickly as possible because I know exactly what is bothering him - the constant sound of MM’s high pitched talking/singing.  But last night - it must have been the extra dose of St. John’s Wort - I was calm enough to push Gus a little further.

I separated them as usual, but then I went to Gus, sat him down (once he stopped tossing around insults about his sister being a ’shampoo mouth’ and a ‘pine toe’) and asked him what was upsetting him.  I got the typical, irrelevant, incoherent, off-topic response.  I persisted and insisted that he stop the jabbering because he is better than that.  He thought for a moment and, with some help, explained that he wanted her to play a different game and that he wanted quiet.  This was a HUGE step for him.  We were even able to talk a little about a better way he could have handled the situation - asking nicely that she play a different game.

Since the situation had 2 sides, I then talked with MM and reminded her that her brother often gets upset when he’s tired and that at night he needs a little more quiet.  We spoke about having consideration for people at different times of the day - early morning and evening when they are likely to want to sleep.  Then we discussed how she could have handled the situation differently: play a quieter game or close the door to her room.

Unprompted, they apologized to each other before bed and everyone is friendly again.  So it just goes to show me that I can’t always fall back on what I know Gus is trying to communicate, sometimes I have to push him a step further and make him use the pragmatic language skills that has developed.  It was a good lesson.

Everyone, have a wonderful holiday whatever you celebrate, and if you don’t celebrate anything, just have a great week!  I may or may not post over the next couple of days.  If I don’t, I’m still sending good wishes!  Thanks so much for  visiting and/or following!

prompt from Mo at Manic Monday

First an update on our tree situation:  It is still standing and well!  There’s been some sort of Christmas miracle!  Several of our keepsake ornaments have been dismembered, but a little glue has saved most of those.  Gus seems to have lost interest in redecorating the tree.  I’d attribute this to either being distracted by gifts and things under the tree, or perhaps he just finally got it just the way he wanted it.  One string of lights bit the dust, but they’re so fragile, I didn’t even give it a second thought.  So our tree drama seems to be over and so far things have been peaceful.

And now on to a tree post of a different sort.  If you’ve been following, you’ll know that Gus has a little obsession with Pokemon.  Last Christmas we gave him the Pokemon DVD board game.  I give it high points for replay value - they had me playing this morning even before breakfast.  I got to play the character Brock who starts with a Pokemon named Sudowoodo.  Sudowoodo evolves from Bonsly - a baby bonsai tree - into a small human sized, walking tree.  Why is he a rock type?  Even Gus, guru of all things Pokemon, has not been able to explain that to me.

Of course, he won the game and had to help MM and me with most of our trivia questions.  I often question the wisdom in letting him have his obsession - is it smart to encourage it?  I think, at least in this case, it probably is.  I think Pokemon has been a vehicle for his to work on social skills.  It’s one of the few board games he’ll actually play, although we do have to work on the inappropriate or insensitive things he says when someone doesn’t know an answer or when someone else is losing and upset about it (like his sister).  He’s getting the Pokemon card game this year, along with a Pokedex, and a Pokemon encyclopedia covering all 3 regions.  The boy will be in hog heaven as they say.  And if I can sneak a peek at that encyclopedia, I may just beat him at the game one of these days.

As I watched Gus diving on top of the other two kids in the snow tube, I reflected on how far he’s come in the past few years in terms of handling the snow.  It’s always been an interesting paradox: he hates things that are wet, especially clothing, but he loves the snow.  There was a time when he would refuse to keep gloves on, but his hands would freeze.  Snow days used to be fun, but tough.

I’ve learned to bundle him up enough so that he stays dry, and I don’t skimp on the winter gear.  Lands End is my favorite for winter wear, especially their snow boots.  Being that I also have trouble with being cold and/or wet, I can personally attest that we have never had a problem with any of their products.

Aside from waterproof boots and gloves, a few minor things have made snow play a little easier:

• hats with ear flaps and hooded jackets
• jacket that comes just below the hips
• neck gaiters instead of a scarf - they don’t come undone, they’re soft, and they aren’t bulky
• snow bibs instead of just pants, and the ones that have gaiters to go inside snow boots

I also make sure that Gus puts his mittens on before his jacket.  That way we extend the amount of time it takes for snow to start getting inside them.  Once the snow gets in, we’re pretty much done.  And, while all these things seem fairly obvious, it took me years of drama to figure them out, especially since I wasn’t much into snow growing up.  I wouldn’t be now if it wasn’t for my kids.

We had a pretty good time today, and when they came in, Gus was almost completely dry, except for the edges of his shirt sleeves (snow got in the mittens eventually).  MM was another story, but she all but buried herself in the snow, loving every second of it.  She was relatively dry all things considered.

When we came in, the kids both wanted something hot.  Of course, Gus hates hot cocoa or tea.  But today he asked for hot cocoa (big shocker) so I obliged.  Now, I almost never give him chocolate, but we found a hot cocoa without caffeine called Hershey’s Goodnight Kisses, which I bought for the express purpose of letting him try it.  He did and still hates hot cocoa.  So we settled for hot apple juice and called it a day.

The snow is still falling, and I expect it will for the rest of the night.  Tomorrow, we’ll probably try snow-tubing down one of the big hills, and maybe we’ll even get to build a snow man.  I’m sure Gus will treat us to a song - he’s been big on the Christmas carols for a few days now.  Funny how a foot of snow can really make things fall into place during this season - even for those of us who have sensory issues with the cold, wet stuff.

Prompt by Mo at Manic Monday

“Last week the candle factory burned down.  Everyone just stood around and sang Happy Birthday.”

~Stephen Wright

Because why try to fight it?  It occurred to me that I was going on about this whole Christmas tree thing all wrong.  So what if Gus wants to obsessively redecorate the tree during every waking moment?  I watched him at it this morning, and he was oddly calm, singing his versions of Christmas carols and just moving the ornaments around.  He actually spread them out now so they’re not all clumped at the bottom.  I’m not entirely comfortable with him around the lit tree with all that water in the bottom, so maybe I just disconnect the lights at a point where he can’t reach?  Or maybe I just don’t worry about it.  Maybe I just go find a yoga class, chill out and let it go. I mean, it’s just a tree, right?  There’s aren’t even any candles on it to start a fire.

We got our tree today, and I don’t remember it being such an exhausting thing when I was a kid, but I’m wiped out.  Lucky for me I get to stay up and work tonight.  Christmas tree day has become one of the parts of the holiday season that I dread just because it’s so draining.  Picking out the tree is easy enough, it’s just what happens afterward.  I often feel bad for the tree.

Today was no different.  I let the kids decorate the tree, not out of any sense of benevolence, but because I have no choice.  Before the netting is even off the tree, it’s trunk barely secured and wet in the tree stand, they attack with gobs of ornaments.  Inevitably I yell to back off at least until I can get the lights on, but apparently the cold alters their ability to understand English.  They only sentence they seem to get is, “If you don’t ________, I’m calling Santa and canceling Christmas!”  That works for all of 30 seconds.

In all seriousness, how do you handle this event with your special needs child?  We try to minimize the overexcitement by delaying the tree purchase as long as possible.  I’m going to spend the next 2 weeks repeating the mantra “leave the tree alone.”  I’m not trying to be a Grinch here, but there are, at the very least, some real safety concerns when a seven year old wants to keep plugging in and unplugging lights or when he’s being wild right next to a seven foot tree.

Getting the tree is not only an exhausting experience for me, but for Gus as well.  He becomes completely obsessed with the it but also wants to do the right thing and stay away from it, so he’s engaged in a constant inner tug-of-war.  The poor kid crashed before his head even reached the pillow and he was crying because his five wishes hadn’t come true, some of which were: the bathtub being longer, the drain being made of wood, and that our house would turn into a giant carrot (he later changed the request to a giant olive.)  I’d say he was pretty fried.

So would it be better to just skip the tree madness altogether?  Do we wait until it’s even closer to Christmas?  I’d love to hear how others handle this.