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 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?

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!

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?

image borrowed from Sheppard Software

So we were doing this vegetarian experiment for a week to see what the effect would be on the family: Would Gus focus better or would he start having sleep issues again?  Would MM start eating more?  Would I have more energy?  DH was just going along for the ride and wasn’t looking for any changes to occur.  Last night, after dinner, we took a vote.

“So, what do we say?  Vegetarian or cAAAARRGHnivore?” I said in my best squinty-eyed pirate voice.

I looked at Gus and he didn’t answer, so I figured he was just going to ignore the question, but then he said, “Omnivore.”  Sounds right.

MM: “Omnivore.”

I didn’t even have to ask DH who was trying his best not to laugh.  He admitted he’d already abandoned the experiment earlier that day.  “Omnivore.”  My vote was unnecessary because I’d have been outvoted anyway, but it would have been unanimous.  We all want our meat back.

The Details

The week started off well with individual veggie pizzas.  That was the night Gus wokeup in the middle of the night, but I think if I’d made a whole grain crust (very easy to do with a bread machine as long as you plan ahead) that might not have happened.  For day 2, we had a 3-bean chili, which I’ve made before.   That went over well.  Monday was bad.  That was the meatless loaf day and I can’t even write about it again.  Just.  Bad.

We recovered on day 4 with pasta served with a portobello & black olive marinara, and thankfully I redeemed myself in my family’s eyes.  But then we hit a snag.  Thursday turned out to be a really crazy day that included lots of manual labor.  By the afternoon I was exhausted, I  didn’t feel like cooking, and I was in a very blah mood.  Normally, that would be a hot dog night - no thought or effort involved.  It would have been safer.  We had agreed to have salmon cakes one night during the week, but I didn’t have the energy to make them, so I improvised.  The result was a sort of weird fisherman’s pie (like a shepherd’s pie with salmon and potatoes instead of lamb).  We will never speak of it again after this post.

The salmon debacle signaled the beginning of the end.  I think we were all starting to crave a burger, but we carried on into Friday for a whole wheat spinach and cheese lasagna.  Epic win on that one!  And if I had known how easy it would have been to make, I would have done it on Thursday.  Hindsight and all that.  We wrapped up the week with a whole wheat baked macaroni and cheese served with a huge helping of broccoli.  MM demanded leftover lasagna, but it really wasn’t bad.  She wanted orange cheese and I used white.

Changes?

MM ate spinach and she started requesting lettuce in her salads.  Otherwise, she’s not eating any easier and will manage to find something wrong with whatever I make.  No big change there.

Gus did better than expected in the sleep department, but as far as school, his week was so-so.  He did break out of his passive mode on Monday to berate me (deservedly) for the meatless loaf monstrosity, so it was good to see him stand up for himself.  Otherwise, no change.

One problem I had was that our diet suddenly included a lot more cheese than usual.  My stomach was not too pleased.  Beyond that, I didn’t feel too different.  My energy level seemed more effected by the weather than by our diet.  However, a week is probably not long enough to really feel a difference, and since I have tried this before I know that after a time, I would have had more energy.

DH wants a burger.  Or at least some chicken.

Conclusions

We can handle a few vegetarian meals a week, but ultimately, at this point in our lives, we still need some meat in there as well.    For a long time, I’ve avoided vegetarian cooking altogether because I thought it wouldn’t work for Gus, but some simple adjustments in the types of carbs we give him made it work.  So it’s straight to the middle of the road for us.  Perhaps less red meat, better carbs and more willingness to eat some veggies.  I’d say the experiment went pretty well, all things considered.

  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.

Sleeping Beauty by Sir Edward Burne-Jones

We took the kids to see a community theater production of Sleeping Beauty.  I was nervous about going, especially after our fifteen minutes of Wall-E.  Things turned out much better than expected.

The show was a musical, which was a BIG plus because Gus loves music.  It was also the earlier of the two shows, so it wasn’t very crowded.  Win!  We got seats near the back right on the aisle (just in case we had to leave).

We had a discussion about the ‘play rules’ on the way over, and we made sure everyone had lunch so there wouldn’t be any hunger meltdowns.  There was about a fifteen minute wait after we got to the auditorium, but he was excited and in a good enough mood that he handled himself well.  The show itself was great, notably the role of the Prince.  Once the lights went down Gus was mesmerized and wasn’t even disturbed by the fact that there was no intermission.  He actually sat through the show better than MM, who started bouncing in her seat about halfway through the show.  She was funny - at one point during a set change, she said, “Can we just get on with the show?  Enough commercials already!”

We were worried that Gus would be yelling out comments, but he was amazingly good about keeping his voice down.

After the show, the actors hung out in the hall and signed autographs as their characters.  MM got a few, but then Gus decided he wanted one too.  He’d been reading the actors’ bios and decided on one.  So we went up to ‘the Prince,’ a very kind fourteen year old, and Gus asked for an autograph.  Then he proceeded to tell the boy his (the Prince’s) name, and what grade he was in.  Prince was a little weirded out until I explained that Gus had just read his bio on the wall.  I think he thought he had a seven year old stalker.

All in all, a great day out for the family.  I’m sure that the advance prep work made all the difference.  That and I think we were due for a little luck as well.

Manic Monday prompt by Mo!

This is my least favorite time of year for so many reasons, but shopping is right up there on my personal Seven Levels of Hell list.  That’s probably why I do most of my holiday shopping in September and October.  Today is supposed to be Cyber-Monday, the Internet equivalent to Black Friday, I suppose, but I did my online shopping yesterday.  Thank you, Barnes & Nobel for your coupon deadlines!

Gus will be getting (courtesy of his grandparents) the Scholastic Children’s Encyclopedia and a boxed set of Encyclopedia Brown novels.   What could be a better gift for a kid who wakes up asking about things like the 4th dimension and time travel?  When it gets closer to the date, I’m also going to download Encarta 2009 for him, particularly cool because we get to avoid the packaging for this gift!  Go green gifts!

Our purchases for Gus have included: a few Pokemon themed gifts, my old MP3 player loaded with his favorite music (because we recycle) and assorted books for the stocking.  There may be a DVD in the works, if so, it will be High School Musical 3 and will probably be an impulse buy from Walmart while food shopping.  This may seem like a scanty list, but our goals this year were to give the kids more meaningful gifts that they will actually play with (as opposed to just stuff that will sit around cluttering up our already cluttered space) and also to make sure they enjoyed their holiday without being too materialistic.  We want to make sure it’s not all about a gazillion presents under the tree.  MM already gets as much pleasure from giving gifts as she does getting them.  They both love doing holiday baking and delivering dishes of cookies to their friends.  There are other traditions we have that are always much more memorable than what they opened from under the tree. Hopefully, we’re doing a decent job of instilling the deeper significance of the holiday season.

After all, you can’t shop for memories.

It’s been a roller coaster of a weekend for us, and I’m even more convinced that there’s some level of SAD going on with Gus.  His mood swings are disconcerting and I’d be lying if I said they weren’t a little annoying as well.  He’ll be going along just fine and then out of the blue gets very contrary, defiant, and difficult.  He’s even been giving me a hard time about meals, and he’s always been an incredibly good eater.

We spent a very nice day with my sister-in-law and brother-in-law, which included a mountain hike. I thought the outdoor time would do Gus good, and I think it did for a while, but he was also intent on giving me a heart attack.  He made a run toward a sharp drop-off on our way out of the park.  I guess it was a bad idea to have a talk with him about staying away from the cliffs - it seemed to make him curious about what would happen.  He had no fear about them, but before bed he had a meltdown because we’d all been joking about bears being in the park.  He fears the imaginary danger and the real danger is totally lost.  It can be impossible to know what to try to prepare him for and what not to say.

It was also interesting how much he slept yesterday - in the car going to the park, most of the way home, and straight through the night.  I fully expected a 3 am wakeup.

He had a pretty good day today, even though we had to stay in because it was a rainy, snowy mess outside.  He didn’t get grumpy until dinner because I made turkey pot pie, which he usually loves.

Hopefully, the comfort of his school routine will help settle his nerves at least for a couple of weeks, until our routine is shattered again with the holidays.

On a side note, NanoWrimo officially ends tonight, and I finished with an official word count of just over 52,ooo words.  So, now that I’m not obsessively cranking out a novel, hopefully my posts will get a little more interesting again!  Hope you had a great Thanksgiving weekend!  Back to the grind tomorrow!