My Autism Insights

  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!

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.

With Sensory Integration Disorder, there is typically either an oversensitivity to an environmental stimulus like noise, texture, smells, etc.  But there can also be an undersensitivity to stimulus as well, which we see when an individual with Sensory Integration Disorder is seeking sensory input, for example, crashing into things.

I’ve written about Gus’s oversensitivity to certain things, but today he reminded us of one of his undersensitivities - high tolerance for certain physical sensations.   He took a bit of a spill on a treadmill today and hit his back leaving a nasty bruise.  Now if I had done that to myself, I’d probably still be in tears.  When I asked him about it though, his response was a very impatient, “It will heal!”  If we hadn’t asked about the bruise at bath time, he never would have even mentioned it.

It’s pretty amazing, like his noise sensitivity only seems to pertain to certain noises, his pain threshold only seems relevant to certain types of pain.   He can’t have his toenails cut without howling that it hurts, but today’s event was completely ignored.

The boy fascinates me to no end!

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!

A few things to post about today!  We went to DH’s office party yesterday and one of the staff brought his kids: two boys aged 5 and 2.  I was amazed at how well they ALL played together.  Usually, MM is the one to make friends immediately and to dominate any new children’s attention.  I expected that to be the case since the older boy was her age.  So imagine my shock when I saw that Gus was playing with J with all DH’s action figures!

One thing I’ve noticed before is that Gus can get along, and will actually take an interest in other children, just not his peers.  A two year age gap seems to work very well for him, and he loves babies.   It was nice to see.

~*~

On another note, Barbara at Goal for the Green had honored me with the I Love Your Blog award, and I’m finally passing it along.  (I’m starting to run out of blogs!)  I don’t remember exactly what the rules are, but I’m passing the award along to:

Lainie Sips - This is a tea blog that I’ve really grown to love!   I am by no means a tea aficionado, but I do drink tea almost to the exclusion of everything else.  Lainie has really peaked my interest in different teas with her reviews.

~*~

Finally, Tanner’s Dad has organized Autism Healthcare Twitter Day taking place all day today.  President Elect Obama is looking for input from the autism community for healthcare needs.  So if you’re on Twitter, use the hashtag #HHS and please lend your support and input!

I had also received this about a week ago:

“Early next week, the Autistic Self-Advocacy Network (ASAN) has been invited to give input to the Office of the President-elect at two meetings relating to disability policy in the upcoming administration. The first meeting will focus on autism policy issues specifically while the second will focus on health care policy from the disability perspective. The meetings will be small, intimate and include representatives from several other autism and/or disability organizations as well.

I’d like to take this opportunity to invite people to give their thoughts as to what issues matter to them in relation to Autism Policy and Health Care Policy in the upcoming administration. We’ve been asked to take 2-3 policy priorities into the first meeting and will want to represent some of the specific needs of autistic self-advocates in the second. As an organization that seeks to represent the needs of the community of autistic people and to fight for the rights of ourselves, our families and our supporters, we want to hear from you. Please feel free to either reply directly here or by e-mail to me at aneeman@autisticadvocacy.org . I’m looking forward to hearing from you and please distribute.

Regards,
Ari Ne’eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC  20036
http://www.autisticadvocacy.org
732.763.5530″

Even if you aren’t on Twitter, you can make your voice heard.

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.

It’s that time again!  I very nearly missed the fact that it is in fact Thursday.  Forgive me - I lose track sometimes!

Anyway, on to thankfulness…

I am thankful that the snowstorm that we are being threatened with is coming tomorrow instead of today even though that means Gus’s teachers won’t get their gifts until after Christmas.  But not having school canceled today allowed me to get some deadlines met, which is a BIG plus!

I am thankful that we did not decide to bake for Gus’s teacher gifts because they wouldn’t have lasted the two weeks that he will be out of school.

I am thankful that I don’t have to fight with Gus over homework for the next two weeks.  I think we were both a little done with it and the break will be much appreciated.  I’m going to try some online learning software if he’s open to trying something new to see how he does with them.

Finally, thanks so much to Barbara at Goal for the Green for two awards:

I’ll pass these along in tomorrow’s post.  Thanks for reading, and please post your thankful thoughts in a comment!