My Autism Insights

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!

Our last ‘holiday’ activity was to take a trip into New York City to visit the Swedish Cottage Marionette Theater located near 79th Street and Central Park West (there’s an entrance across from the Museum of Natural History).  You may question, “Why not visit the Museum?”  For a kid like Gus who gets overwhelmed with sensory overload very easily and wants to be everywhere at once, the Museum is fun, but it’s also an endurance trial that greatly shortens the length of time that he can manage himself.  The puppet theater, however, was just his speed.

We saw a production of Peter Pan.  The show lasted 55 minutes, perfect for short attention spans (of a 5 year old and a 7 year old with ADHD symptoms in addition to his Asperger’s).  It’s a very small theater, so even at its most crowded, there aren’t but so many kids.  It wasn’t very noisy or busy, and even the little bit of chatter before the show started was annoying Gus who was trying to listen to the music playing.  He coped.  Once the show started, he was thoroughly engaged and sat through it, probably better than some adults who were (very rudely) up and down, in and out of the theater.  At one point during a set change, there was music playing and a disco ball shone lights on the curtain, stage and ceiling.  It was like when Gus was a kid and used to get mesmerized by the ceiling fan or the wind blowing through the leaves in the trees.  Complete fascination.  Even MM got a little zoned out watching the lights.

It was a very long car trip for us, but worth it in the end, despite the obscene parking cost and the subsequent back pain I’m dealing with today.  We thought about taking the train and then subway, but I was worried about Gus getting overwhelmed and overly ‘bouncy’ in what would be for him a dangerous environment.  In the car though, the kids had a packed lunch and chilled out listening to their favorite music.  We got there early enough that they could spend some time at a playground near the theater to work out some of their energy before having to sit through the show.  Before making the trek home, we stopped in the boroughs to visit with my sister and have a bite to eat.  They slept on the ride home - easy peasy.

Many times it can be a challenge to find entertainment for children on the spectrum because of all the sensitivities to their environment.   I’ve found that little excursions to things like community theater, the puppet theater, smaller kids museums, or outdoor activities have worked best for us.  Both kids enjoy their time without getting sent over the edge.  And that works for me.

Or a brand new year as it were!  Happy New Year, readers!  Today I am thankful for:

• Getting home safely from our brief New Year’s Eve celebration at my cousin’s.  We got hit with a snowstorm yesterday morning, and decided to go out anyway as soon as the snow stopped.  The roads were kind of bad, but the kids were so excited about seeing her kids that we chanced it.  Her son is a few weeks younger than Gus and has a similar diagnosis.  They usually only interact in passing, but yet always seem excited to see each other.  They did play together yesterday, so it seems that they may progress toward being friends one of these days.
• I am thankful for a very patient and kind waitress this morning when we took the troops out for breakfast this morning.  In my infinite wisdom this morning, it didn’t occur to me that we had waited too late to get moving.  Gus has a much harder time with his coping skills when he’s tired or hungry.  So he got upset that we had to go to our table before he was ready, and he was quite rude to the waitress.  I wouldn’t say he had a full blown meltdown, but he was pretty loud and clearly distressed.  The waitress never even flinched or frowned, just went on as if he were being the most docile child on the planet.  Had I been less agitated myself, I would have thanked her especially.  The world needs more people like her.
• I am always thankful for the chance to start fresh and to try new things.  We got some good news yesterday which was a good omen for things to come.

What are you thankful for at the start of this new year?

  image by Designed to a T

I usually like to reflect on how our lives have developed over the past year.  Gus has had a very up and down year, but I think has come out ahead for it all.  Some of 2008’s highlights:

• Tried several dietary adjustments with no significant or sustained difference in Gus’s ability to focus or self-regulate in school.  But he is healthy which is always a plus.
• Tried medication, which in my opinion was a disaster.  It took my lively and brilliant little boy and crossed the roboticness of a Dr. Who Cyberman with the grumpiness of a Dalek.  I don’t see another medication trial in the near future unless there is some extenuating circumstance.
• Gus learned some new self-care skills this year: he can now put on shoes (with Velcro), dress with minimal prompting in the morning, and can put on fingered gloves independently.
• Gus learned to ride a two-wheeler AND within a month of learning completed a six-mile bike tour - a huge accomplishment for any seven year old.
• He joined a soccer team and really enjoys the game.

Those are just a few of the more momentous events of this past year.  Gus has expressed a desire to “behave better in school” in the coming year.  In addition, we plan to try to get him some more opportunities to socialize, possibly in a singing class or a special-needs bowling league.  In the spring, we should be able to start doing some bike riding together and we’re going to join a cycling club as a family.  That will open some opportunities for more of those long, scenic rides that are so calming for him, and may also allow him the chance to make a friend if that’s his wish.

One of the reasons I’m becoming attuned as a Kundalini Reiki practitioner is so that I can start using Reiki energy to help Gus to stay calm and focused.  If it has the benefit I’m confident it will, I’ll eventually teach him to channel Reiki energy himself.

In terms of the autism community at large, I’ll continue to share my lessons and experiences through this blog for as long as I am given a platform.  In the near future, a fellow blogger and author, Adonya Wong , will be guesting here on her virtual book tour.  She’s written a wonderful picture book entitled In My Mind and will discuss the book and her experiences with her son’s autism.  Adonya’s visit promises to spark some great discussion, and there will be a sweet giveaway as well.  Stay tuned!

So those are a few of our intentions for the coming year.  What progress have you seen this past year, and what are your plans for the days ahead?

To all my readers, new and old: Have a happy and safe New Year!

Hope you all enjoyed/are enjoying your holidays!  We spent Christmas day visiting family.  Although it was a long day involving a good bit of travel, it was lower-key than usual, which was a good thing.  The last leg of our journey was to my husband’s aunt’s house.

They have a collection of singing plushies: singing Christmas trees, snowmen and penguins, dancing Santas…the works.  There was even a tree that danced and walked toward you.  Gus is always fascinated by them.  He especially enjoys making them all sing at the same time!  So apparently, his noise sensitivity does not extend to lots of different toys singing different songs all at once!  But when his sister cries it’s like the end of the world as we know it.  As irritating as all the mixed songs were to me, the unabashed bliss on his face eventually made me keep my mouth shut and just let him have his fun.

Always interesting to note all the little nuances of Gus’s Asperger’s and Sensory Integration Disorder.

Did you notice anything new or interesting over this holiday?

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.

Happy Winter Solstice!  In keeping with our family tradition, we got up early this morning and went outside to greet the sun.  From now on the days will start to gradually lengthen - what’s not to celebrate?  As we trekked through calf-deep snow (knee deep for poor MM) I realized what a sensory wonderland it was for Gus!

I’ve read that kids with ADHD and many on the autism spectrum do particularly well when they can spend some time out in nature.  I’ve found this to be true for Gus (Asperger’s and borderline ADHD).  I did some videotaping and tried to experience the moment from his perspective.  I’m not expert at video-making yet, but here’s a brief glimpse of our trip to the lake this morning:

• Trudging through the snow allowed Gus to use his large muscles providing proprioceptive sensory input and also strengthening the weaker core muscles.
• Being bundled in several layers of warm clothing gave him some deep pressure (squeezing) which tends to be calming for him.
• At one point, Gus lay down in the snow which also provided deep pressure with the added bonus of a snow angel thrown in with the deal.
• Early morning, cold, snowy day - very quiet and heavenly for a child with noise sensitivity.
• The rushing wind created a white noise that added to the soothing feel, especially when listening to it through a jacket hood.

On the way back, we decided to take the long scenic route, and I noticed that Gus was exuberant and loving the morning, but not in the manic way we typically see when he’s racing through the house.  That was a gift in itself!

Speaking of gifts, the kids were allowed to open a couple of gifts last night and this morning.  Celebrating both Solstice/Yule and Christmas helps to mitigate some of the craziness of Christmas day.  They get less overwhelmed by too much ’stuff’ and can take the time to enjoy their presents a little at a time.  He loved the mini Hot Wheels set and the new Leapster game; the MP3 player didn’t go over as well as I thought.  Perhaps when he learns to use it, he’ll warm up a little to it.

So that was our morning.  How does your special sensory needs child do with outdoor/nature time?

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.