My Autism Insights

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.

Prompt from Mo at Manic Monday .

Hmm…things that we have a bounty of in our lives right now:

Days off and half days -  These are bountiful this month and next.  Between holidays, parent/teacher conference days, and any other reason the district can find to shut down,  Gus will be home an awful lot.  So much for the consistency and structure that he needs in order to function.  However, we will get the opportunity for some home learning.  Unfortunately, this also means less time during the day for me to work.  And when work does not get done, the paychecks are not so bountiful.

Toys and stuff that needs to not be in this house - Every year when the holidays roll around, I try to weed out toys that are a) no longer age appropriate b) broken c) not ever played with.  The toy chests are overly bountiful.  The purging never seems to work, which is becoming a problem.  Gus has a hard enough time focusing without having a gazillion options.  Also, trying to help him learn to be more independent in cleaning up after himself becomes even more difficult for him when the amount of things he has to be responsible for is so overwhelming.  And his is the more organized of the two kids’ bedrooms.  Don’t get me started on his sister’s…

Cheese - If I had known how bountiful the joy would be just from such a simple thing as being allowed to eat cheese, I never would have stripped it from Gus’s diet.  He’s been eating dairy again for a few weeks now, and I haven’t seen a significant difference in behavior or focus.

So, to sum up, if it was not clear enough, kids on the autism spectrum (and probably kids in general) benefit from structure and consistency, are not helped by clutter, and are not harmed (unless there is some other gastric sensitivity or allergy) by dairy products.  And that’s all she wrote today.  Your thoughts and comments are greatly appreciated!

It’s been a long week and some thankfulness to put things in perspective is in order.

1. I am thankful for the two nights of uninterrupted sleep I got this week.  The third night, last night, was not the charm.  We may have to start taking some other proactive measures before bedtime.  The second time Gus got out of bed last night, I tried taking the bad stuff out of his head - I put my fingers to his forehead and made a vacuuming sound - so he wouldn’t have any more bad dreams.  He seemed to go back to sleep after that.  I think we’re also going to take all these florescent lights out of the house.  They may be better for the environment, but I have a sneaking suspicion that they are not doing very well for him.  I find the noise they make very irritating, so I wonder if they are contributing to some of this.

2. I am thankful to have a husband and father for my children who is relatively engaged with his kids, especially now when the ‘boy’ issues are starting to emerge that I so don’t want to have to deal with.

3. I am thankful that we’ve decided to back off on the casein-free diet.   We’re not going whole hog back to dairy, but I’m allowing cheese back onto the menu.  The pure bliss on my kids’ faces over being allowed to have cheese again made it clear that we’d made the right choice.  It should always be that easy to make kids that happy, so I’m grateful to have been able to do something right by their standards.

Please feel free to share your thankfulness in a comment.  These days it seems more important than ever to remind ourselves of even the smallest blessings.

I recently learned that it is Sensory Processing Disorder Awareness Month.  SPD (and this is the extremely simplified version of an explanation) is usually seen when the individual has trouble processing information received through the senses and often results in over-sensitivity or under-sensitivity to environmental input, or in problems in the vestibular (movement) or proprioceptive(positional) senses.  In recognition of the awareness month, I’ve decided to link to some of my past posts relating to the topic and to a few other blogs.

On the use of music in helping with symptoms and Auditory Integration Therapy: Try a Little Music.

On proprioception: Proprioception and Sensory Integration.

Wilbarger Technique.

SPD/SID and sleep issues: Summer, Sleep and Sensory Integration

And a couple of other bloggers I’ve seen discussing the topic:

Good Fountain

Special Needs Blog

Eamon’s Journey Thru Autism

Anyone else blogging on SPD, please let me know and I’ll add your link!

I recently learned that it is Sensory Processing Disorder Awareness Month, so in recognition of that I’ve decided to link to some of my past posts relating to the topic.

On the use of music in helping with symptoms and Auditory Integration Therapy: Try a Little Music.

On proprioception: Proprioception and Sensory Integration.

Wilbarger Technique.

SPD/SID and sleep issues: Summer, Sleep and Sensory Integration

And a couple of other bloggers I’ve seen discussing the topic:

Good Fountain

Special Needs Blog

Eamon’s Journey Thru Autism

Anyone else blogging on SPD, please let me know and I’ll add your link!

I recently learned that it is Sensory Processing Disorder Awareness Month, so in recognition of that I’ve decided to link to some of my past posts relating to the topic.

On the use of music in helping with symptoms and Auditory Integration Therapy: Try a Little Music.

On proprioception: Proprioception and Sensory Integration.

Wilbarger Technique.

SPD/SID and sleep issues: Summer, Sleep and Sensory Integration

And a couple of other bloggers I’ve seen discussing the topic:

Good Fountain

Special Needs Blog

Eamon’s Journey Thru Autism

Anyone else blogging on SPD, please let me know and I’ll add your link!

my feet look so much smaller than they are in real life!

I was tagged for this by Mandy at Texas Medical Freak .

“Now I am supposed to list either six boring or quirky things about me. Then pick some other bloggers to continue the circle.”  I try to keep any memes that I do on topic, so I will try to find six things that are by some stretch on-topic (some of my own sensory quirks).  When I run out of those things, I guess I’ll just be a little off topic - please don’t sue me.

1. I hate to wear outdoor shoes indoors because they make the floors dirty, but I almost always wear socks or slippers around the house.

2. I get very confused and irritable if I have to listen to too many voices at once or too much noise. Good thing my kids are so quiet (*sarcasm)

3. I have been relatively sleep deprived for the past seven years, which is partly due to motherhood, but I never slept that well to begin with.

4. I drink tea almost to the exclusion of everything else.  I do have the occasional juice or soda, but not that often.  I even take a travel mug of tea on my bike rides instead of water.  I should really stop that.

5. I love books and words, and I regularly obsess over the ones I like.  I’ve read Harry Potter more time than I can count, and am deeply embroiled in the HP fandom.  In my defense, the fandom won’t allow me to leave - it’s not my fault at this point.

6.  Windows without curtains or blinds make me paranoid.

Those seem fairly boring to me, but please don’t make fun.  My super-strong ears will hear your laughter halfway around the globe, and I’m very sensitive.

I’m tagging some of my favorite bloggers for this: Maddy at Whitterer on Autism (because I know she’ll come up with something fantastic), Angela at Memoirs of a Chaotic Mommy , and Jessie at Speakup: An Adult Autistic Perspective  on Growing Up on the Autism Spectrum .  Have a blast, ladies.

1. The children stayed up over an hour past their bedtime to watch Pokemon: The Legend of Dark Rai and still got up at 5:30 am.

2. The sleep-deprived children were fighting over every little thing, culminating in an argument about stuffed animals.

3. The stuffed animal argument significantly delayed the tooth-brushing that preceded the shopping trip.

4. Your older child decided to leave without you.

5. Your older child was loud enough to be heard clear across the supermarket - the PA system would be a whisper by comparison.

6. As soon as the groceries were loaded onto the conveyor belt, the older child ran away to check out a Kirby video and had to be apprehended by the five year old.

7. The cashiers knew your oldest child by name and were trying to help keep him from running off so you can pay the bill.

Next time I think I might just make egg salad to send them for lunch and I’ll wait the extra day to buy groceries. One. More. Day.

 image from It’s A Blog Eat Blog World

From the moment we left the house, the sky threatened a downpour.  But we had to go to our neighbor’s birthday party: outdoor pavilion, playground, mini-golf and a beach.  Miraculously, the weather held, and Gus did pretty well even though there were loads of kids, some of whom were unfamiliar.   He went swimming and played a few games of golf.  I eased up on the dietary restrictions for the day.  Everyone, including Gus, was having a great time.  And then it was cake time.  All the children gathered under the pavilion.  Just as the first note of the Happy Birthday song was sung, a loud crash of thunder announced the commencement of the storm.  The sky let loose a torrent of big frigid drops. 

Hands held over his ears, Gus shuffled around in circles trying to find a “quiet place” away from the wind, the pounding of the rain against the roof, the squeals of children.  I’d forgotten the headphones.  Finally, despite hating to get wet in the rain, he asked to go sit in the car to listen to music.  Party over, but at least not too soon.

It seems that some organizations may be getting the clue that they need to be a bit more understanding about their customers traveling with children on the autism spectrum.  An article in The Morning Call mentions that Delta Airlines is developing travel guidelines for families with a developmentally disabled member.  Disney World, Sea World and Busch Gardens have passes to allow autistic children to the fronts of lines to cut down on those meltdowns that stem from long waits.

USA Today ran a similar story earlier this week.

During this time of year when kids are out of school and families want to enjoy the summer, the most important thing to remember when traveling with a developmentally disabled child is planning.  It may take weeks to build a child up to being able to make a trip that will disrupt his routine and expose him to a host of stimulation that may be overwhelming and scary.  Social stories and role playing to practice some situations are a couple of ways to prepare in advance.  Make sure you have the things that your child finds soothing.  And don’t be afraid to let people know - like the airline you’ll be traveling - that you’re traveling with a child with a disability.  It doesn’t have to be a huge deal, but it might help prevent some situations.

As the saying goes, “An ounce of prevention is worth a pound of cure.”

   Warner Bros.

My husband and I went to see The Dark Knight in IMAX this morning (absolutely LOVED it, by the way).  For two and a half hours, this is what I experienced:

Noises and explosions so loud I had to keep my ears covered for long periods of time.  Some of the sounds were so intense (any time a car was onscreen) that I could literally feel the vibrations through my body, and it became hard to breathe.

Stunning visuals so large and close that I couldn’t take them all in, let alone process them.  And any time Batman jumped from a building, I had to close my eyes because the sensation made me dizzy and a little ill.

I spent at least half the movie needing to go to the bathroom, which means I spent half the movie splitting my attention between the film and the internal dialog I was having with my bladder trying to get it to, “shut up so I can watch the movie!”

Hurting ears, visual overstimulation, internal distraction making it hard to focus.  It occurred to me that living with autism might be a little like being trapped inside an IMAX movie.  I always had the option to get up and leave, but an autistic person can’t just walk away from the sensory overload.  I wonder if more people saw it like that if they’d be a little more patient, understanding and empathetic.