My Autism Insights

Manic Monday prompt by Mo

This weekend we met up with my sister’s family to celebrate her birthday at a new Japanese hibachi restaurant nearby.   Gus has had a sort of love/hate relationship with Japanese hibachis: when he was very young, they were no problem, at around 2 they traumatized him, and now he loves them again.  It was a great time, especially since he spontaneously decided he wanted to try sushi!  Fortunately for him, my nephew eats it and ordered some so Gus could try it.

He shoved a piece of raw white fish (it was either squid or halibut) in his mouth, and with a full maw exclaimed, “I wike it!”  The salmon didn’t get as positive a reception.  I was so impressed he actually ate it without spitting it out, that I didn’t bother to remind him not to talk with his mouth full.  We had a great time and he must have eaten his body weight in food. MM tried some new things too: edamame (soy beans), soup, and fried rice.  It was a win all around!

Which gives me a nice segue into the Lemonade Award I received from 2 bloggers: Caregiving Daughter and More Than a Number.  So, I’d like to thank them for the recognition and will pass the honor on to a couple of bloggers who exhibit a positive attitude:

Healing…Through the Eyes of Autism

Autism SucksRocks

Spectrum Siblings

Have a great day, everyone & try to keep it positive!

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!

Prompt by Mo of Manic Monday .

I haven’t been able to come up with anything for the last couple of Manic Monday prompts, but finally, I’m back in the game.  Today’s word is candy.

We managed to get through Valentine’s Day with a minimum of candy incursions into Gus’s diet.  MM came home with a dragon’s hoard of candy, which I quickly had to confiscate.  So much for the ‘healthy’ drive at her school.  She ate more candy last Thursday than she, cumulatively, in several months.

We learned something interesting when we went to Gus’s school though.  While he wasn’t bombarded with Valentine’s candy (because he was home sick) it has been suggested to his teacher that he be given Starburst as a motivator.  This came from the behaviorist.  Because of his oral sensory issues, chewing on something helps him to focus.  He likes Starburst.  So that seemed like the best choice on short notice.  Carrots were another option, but since he tends to hum when he’s eating them (maybe the crunchiness is a factor?) it’s distracting to the other students.  Since the Starburst is working, I don’t really want to step on the teacher’s toes, but at the same time, I don’t want him eating candy.  He doesn’t process sugar well.

We came to the agreement that she will try to get him to chew fruit flavored sugarless gum (Wrigley’s Extra recently came out with a line) to see if that can replace the candy.  If not, I may allow the Starburst, although I will dislike it.

Any thoughts on what he can chew (he likes fruity flavors) that won’t wreck his teeth and send him into overdrive in the afternoons?  Ideas would be much appreciated, and I’ll thank you in advance if you leave a comment!

P.S. A word on comments: all comments are moderated, so if they don’t show up right away, don’t fret.  They will as soon as I approve them!

  image from Webweaver’s Free Clip Art

Since Gus didn’t have school today, it was a perfect time to get him in to see the doctor to make sure his eyes were all right.  They are fine.  The eye exam says that he has 20/20 vision, although I think I annoyed the assistant when I asked if she wasn’t sure he hadn’t just memorized the line. (Which he did and he proved it by reciting it to me after we were back in the exam room.  Not my fault he has such a good memory.)  The doctor gave me some information on tics and said that we should probably not worry about it, but she gave me the name of a neurologist anyway, in case we were interested.  Gus has an appointment at the end of February to see the neuro.

From what I read on tics, they’re not as uncommon as I had thought.  They are defined as “repetitive, rapid, involuntary muscle contractions or vocal outbursts that usually involve muscles of the face, head, neck, shoulders or respiratory tract.” ~Disneyfamily They can last anywhere from a couple of weeks up to a year  before becoming a serious cause for concern.  The movements are frequently transient, meaning they can start in one part of the body and move to another, and generally end on their own.

The cause of tics is unclear, but has been associated to physical growth, stress and nerve disorders like Tourette’s Syndrome (which can include chronic and severe tics).

Apparently up to about 20% of school-aged children may experience some form of tic, and one study showed that the incidence of these movements increased during the winter months.

The advice for dealing with the tic that we received mostly said to help the child relax and to ignore it as much as possible unless it starts to interfere with daily functioning.   We’re not going to freak out over this.  We’ll try to find out what might be causing stress for Gus and will try to help him relax. Any other information or suggestions are welcome.  Otherwise, we’ll wait to see what the neurologist says next month.

   Now as for our Manic Monday on Snow (prompt from Mo of course), here’s a silly conversation I had with Gus at the bus stop while waiting for MM to get home:

“Did you want to play out in the snow today?”

“Yes.”

“Yes??  What do you mean yes??”

“Can we play in the snow?”

“No!  It’s too cold!”

“Why did you say that?”

“I didn’t expect you to say yes.”

Fortunately, he wasn’t too attached to the idea of going out in 20 degree weather, or else I’d be standing outside cursing my own big mouth.  He actually got a laugh out of it, so it’s all good.  Happy Monday!

Manic Monday prompt from Mo

The other day, someone was asking about tools to help a teenager with high-functioning autism get more organized (I apologize for not remembering who/where this came from).  Kids with high-functioning autism, Asperger’s syndrome, ADHD, and other learning challenges can find it overwhelming and frustrating to keep track of all their responsibilities as they get older and expectations increase.  There are a few tools and strategies that may be helpful.  Some of these I use in my own home office because I seem to have a harder time keeping my own brain straight with every passing day.

Young Students & Pre-readers

When Gus went into kindergarten, he transitioned from an ABA program to a TEACCH program.   Each student had an office, a desk walled in by tall file cabinets that held the student’s instructional materials and files for the year.  The front of the student’s cabinet held his schedule, small laminated image cards to represent each segment of his day (think of PECS cards).  Each card had a Velcro back and the student could remove each task as it was completed.

With the help of Gus’s teacher, we adapted this system for home to help Gus in managing his routine without constant verbal cues from us.  For example, at bedtime, he could put up his cards and then remove each one (bath/pajamas/brush teeth) as it was done, right up to the point of getting in bed.  Until he was able to set his own schedule up, I could do it for him and he just had to follow it.  It was very helpful at the time.

Older students

There are several computer applications that work wonderfully for getting organized.  I personally use the calendar in Microsoft Office Outlook 2007.  But I also spend a great deal of time in front of my computer, so this type of tool is great!  Google offers a free calendar if you have a Google account.  If your child has a cell phone, many of them have some sort of calender function, or information from an online calendar can be imported into many of them. This may not seem appropriate for a special needs student, but it largely depends on the child.  Some students are much better interacting with technology than others.

The computerized calendars may not be practical for other special needs students, so my next best suggestion would be the Flylady system.  I have no affiliation with Flylady, except that I’ve used her suggestions, and even though I fall off the wagon regularly, they’ve helped me a great deal.  She offers a section of her site geared toward kids including tips specifically for students that can be customized any way they need to help get organized.

You can also get creative and work with your child to create the organization method that best suits him or her.  You can have loads of fun with a large desk sized calendar and some stickers, or perhaps your child is tech savvy and responsible enough to handle more sophisticated tools.  How do you help your child learn to become more organized?

Prompt by Mo at Manic Monday

Got home too late to write a post yesterday, unfortunately, but I wanted to post anyway about the apparent tradition in the healthcare field to dismiss or discount what a patient is feeling (or conversely, not feeling). It has always amazed me that so many professionals can tell a patient that there’s nothing wrong because they don’t see what the textbook says they should; it’s easier to say the patient is imagining things.  “That’s not pain you’re feeling; it’s pressure.”  That’s my favorite line.  But, for someone with sensory processing issues, they may feel things differently than the average person.  Pressure, vibration, sound…those things may all equate to pain.

My visit to the dentist yesterday was one example of this tradition in action.  I went in to have a tiny cavity filled - should have been a very quick and fairly painless thing, and mostly it was.  I told the dentist that my mouth is very sensitive - I’ve lived with it all my life, I think I should know by now what I can and cannot tolerate, right?

I dealt with the injection, but apparently Dr. Dentist decided that he didn’t need to wait for me to get numb and started drilling away.  Of course I felt everything.  Then he figured he could wait another ten seconds.  I was more numb, but here’s the thing - it wasn’t just the physical sensation that was hurting me.  The sound of the drill felt like a rusty train spike going through my head.  It very nearly brought me to tears each time he used the small drill.  I wasn’t annoyed with the dentist at first.  He really had no way of knowing.

But once he was done, I gave a small apology for all the ‘jumpiness’ and tried to explain that even after my tooth went numb, the sound of the drill was still painful to me.  “I think you’re more sensitive than your teeth are.”  His tone was dismissive, derisive.  I did not appreciate it.

There really needs to be a nationwide training program for healthcare providers about things like sensory differences and the autism spectrum.  It would hopefully serve to make those providers who like to sneer at the silliness of their patients a little more compassionate.  Needless to say, Gus, who can’t tolerate the electric toothbrush, won’t be going to that dentist anytime ever.

P.S.  This is not to imply that I have ever been diagnosed with a sensory integration disorder, simply that I have enough sensitivities to things that have been discounted by healthcare professionals that I can empathize.

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.

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.

  Image from Kickstock Free Images; Prompt by Mo of Manic Monday

Before any of us steps into the  light at the end of the path, there is something that we all should do, we all probably think about, and we all probably keep putting off.  For any family with children, but most especially those of us with special needs children, a will should be very high on our priority lists.  Unfortunately, most of us just keep putting it off indefinitely.  According to a Money Magazine article in 2005,  after 9/11, less than 25% of the victims had wills prepared.

A very basic will, one that pretty much only names guardians and says ’sell all my stuff’ could cost as little as $300 (per person); a fully detailed will might run around $500.  Some attorneys may offer discounts for preparing wills for couples.  You can simply name a guardian (Be nice and let them know you’re doing it first!)  an alternate guardian, and an executor.

In addition, although it may not be legally binding, you can also prepare a letter spelling out all your wishes for the care of your special needs child.  No matter who you choose as a guardian, no one knows your child’s needs like you do, but the guardian would be greatly helped by having as much guidance as possible.  What are your feelings about education?  Medication?  Institutionalization?   The more information you provide, the better.

A small investment and some simple steps could protect your child from landing in foster care in the event of any dispute about who has rights to him or her or them.  Not the most cheery thing to think about, but necessary.  What are we all waiting for?

Here’s my challenge to you: if you are a parent, special needs or typical child- doesn’t matter, and you don’t have a will, before the end of the year, at least make some calls and start the process of having one made.  You’ll feel better when you do.  If you already have a will, when was the last time you updated it?

As the great sages of Poltergeist once said: “Do NOT go into the light. Stop where you are. Turn away from it. Don’t even look at it.”  At least not until you get your will in order.