My Autism Insights

This will be a non-autism related post…sort of.  I’ve just spent the evening watching the first African-American president become elected.  And I feel hopeful.  I feel hopeful that my bi-racial children will now grow up among a different world view, that there is now an image of success at a whole different level than I’d ever imagined.  I feel hopeful that no matter what my son’s differences, it has been proven in a very visceral way for me that the sky is truly the limit for him, for my daughter, for generations to come.

I’m rambling a little because I’m, honestly, floored.   No matter what happens now, beyond political alliance or color of skin, the majority of the people of this nation have stood up and looked beyond difference toward our best hope to achieve the common good.

So in that way, maybe this is a post about autism, about succeeding regardless of difference.  Maybe it is a post about possibility, and vision, and hope.  Yes, we can.  I will look at my son with the renewed belief that yes, he can too.

To answer Gus’s question, he does apparently.

It wasn’t pouring, but it was that gross, misty, cold rain coming down when we got to the soccer field yesterday morning.  I was expecting for the coach to say they were canceling, but no such luck.  Shortened practice/game schedule.  Fortunately, the rain stopped, but it remained cold and damp.  Gus wasn’t fazed; for me it was just shy of torture.  A few degrees colder and I would have been huddled up somewhere trying not to cry.  Cold is bad.  Wet is bad.  Together…ugh.

The game was a little different.  Instead of splitting the more experienced players from the younger, less experienced ones, everyone played a game together.  Gus got a new mentor, a girl this week named C.  He had a great time following the ball from one end of the field to the other.  He wasn’t aggressive enough to get anywhere near handling the ball, though, except for one time toward the end of the game.  Then he sort of ran it in the wrong direction.  I think all the players on the field threw him for a loop; he often ran to the sidelines to get away from the crowd. No matter, it was a good time for him and that’s what counts.

Today we went for an early morning bike ride.  There probably won’t be many more of those in near future.  We may attempt some pumpkin carving this afternoon.

On the sleep front, I’ve added something new to the bedtime routine.  First, we have these mats, not exactly exercise mats because they’re thicker (just over an inch thick) and not slip resistant.  I came by these mats because my ex-boss was giving them back to the hospital after the yoga studio closed down and she knew that Gus liked sandwiching himself between them.  So she gave me a couple for him.    At night, after therapeutic brushing and joint compressions, I let him curl up in a ball, and then I roll him up in the mat like a big burrito, and roll him back & forth on the floor.  He loves it!  Deep pressure sensory input before bed seems to be working better than the brushing, which he is resisting, at this point.

So that’s our weekend.  Hope you are having a great one too!

Or lack of policy, more accurately.

Governor Palin gave a speech in Pittsburgh today.  I’m scouring the Internet, but so far have been unable to find video of the speech, but I have found some information , including a transcript of the speech. After reading it, I still don’t see anything new or particularly substantial about her plans, and I find some of her words contradictory to her past actions.

She did mention fully funding IDEA - great, only 11 days before the election and about a year after Senator Obama mentioned his intention to do so.  She talks about school choice for students with special needs, but some states already provide at least some level of choice.  Expanding that would certainly be a nice idea, but with the spending freeze that Senator McCain called for during the debates, where is the funding coming from?  Governor Palin claims that by reallocating funds already in the budget it can be done, but she neglects to give concrete information as to how.

In a Chicago Tribune article, quoted at Autismvox , her plans apparently include boosting early childhood funding until age 3, but what is supposed to happen to those children after age 3?

A couple of other issues are distressing.  First, she claimed that the special education budget in Alaska would have been tripled by 2011, but a big chunk of that funding increase is for a program called the Alaska Youth Challenge Academy, a boot camp for dropouts with behavioral issues.  Autism, Down’s Syndrome, Cerebral Palsy, ADHD…none of these, nor a host of other special needs, are ‘behavioral issues,’ so where is the funding for those students who wouldn’t be served by being in a boot camp?  When given the opportunity to advocate for individuals with special needs in Colorado, she opposed an amendment that would raise funds for those waiting for services - about 12000 people.

Governor Palin got in a dig at the Obama campaign, and her digs have been nothing but misrepresentations and double standards up to this point, by saying that his tax plan would tax trusts that parents establish for their special needs children, which is inaccurate.  As one commenter on the CBS News blog said:

“Sure, any special needs individual who is lucky enough to have a NET EARNING of $250000 per year in INTEREST FROM TRUST FUND will be affected a bit. We are talking about trust funds well above $5.000000 here. How many kids will be affected, I wonder? I”d love to see statistics on that.

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Posted by odnarusalka”Governor Palin fails to mention that the McCain-Palin health plan would allow insurers to deny coverage to those with pre-existing conditions.  Finally, Governor Palin spoke about the fact that children with disabilites grow up and that there needs to be support for them as adults as well.  Yet, she has yet to act on Maria Shriver’s call to Governors to employ disabled adults, and John McCain opposed the Community Choice Act, as mentioned in Becky Blitch’s blog.  So once again, the sound bites sound interesting but there doesn’t seem like there is much in the way of specifics, action, accuracy or truth where the Governor is concerned.  If this was her Hail Mary play, she seems to have just missed the goal.

Gus had his second soccer practice today.  The first thing I noticed was that the leaves are breathtaking in their full fall regalia this weekend!  I wanted to take pictures, but it wasn’t a good idea while I was driving, and after that, due to my MADD (mommy ADD) I promptly forgot.

We got to practice just in time, and Gus got his mentor for the week, a seventh grader named D.  It was interesting how the different mentors effected Gus’s playing.  Last time, T was more attentive, but not a particularly ‘bouncy individual.  Gus spent a lot of time walking as he dribbled.  This week, D was a little more distractible, but he was also more energetic and I noticed Gus running the ball more.  He got a few steals and scored (by my count) about 12 goals (he said 32, then 18, then 8 or 9).

He definitely looked more confident on the field and was having a good time.  So it’s been well worth it.

One other thing I noticed was that sitting for 90 minutes, your butt gets really cold.  The season goes into November - I’m scared.  I was freezing today, I think by next weekend I may have to wear some long johns to sit out there!

image from clkr.com

Yesterday, after an hour break from getting flu shots, Gus started on his first sports team.  We showed up early to meet the coach and get his Gus’s uniform.  I felt so bad for him wearing shorts when it was only about 40 degrees outside.  It warmed up quickly, thankfully.  His uniform is red with black shorts - he looked adorable and it was very evident how good he felt about himself.

The way this special needs program works is that older kids in the soccer club volunteer a Saturday to work with the special needs group, which includes individuals of all ages.  Each player gets a mentor to shadow him (or her) throughout the practice.  This was a relief because I was worried about how they’d keep Gus on the right field.

Gus’s mentor was named T. who proved to be a very nice and patient kid.  It was a sort of practice and game at the same time.  The more experienced special needs players go to one field where they (with their mentors) play an actual game.  The less experienced players go with the coach to learn specific skills interspersed with short game-like conditions.

The mentors were very impressive in their interactions with the team, and I saw a great deal of respect and patience at this practice from everyone involved, which really put me at ease.  We’ve had experiences when someone said they could work with an autistic child and they really had no clue.  But yesterday, even when one little boy kept taking his socks off (sensory defensiveness?) no one got ruffled.  I think we’ve found a good environment for Gus.  He wandered away from their field a few times and sat on the ball to rest a couple of times, but T. was great about gently getting him back on task.

Admittedly, I was a little skeptical about how Gus would do.  His ball skills have always been very weak, but he’s also very good on his feet, so I thought he had a good shot at picking up the game.  He did fantastic!  He was able to dribble the ball almost from the beginning and I noticed that they were teaching him a little bit about passing when the other team is in your way.  The coach taught him a little fake-out move and by the end of the practice, he was remembering half of it, more importantly, he was remembering to use it, even if it wasn’t mastered yet.  I’m glad he got on the field and stayed there the whole time.  It was a big success.

One thing that surprised me: he didn’t run as much as I expected.  At home he is constantly zipping through the house, but he was sort of strolling along with the ball.  He’s got a cold, so he may have just been feeling tired from that - we’ll have to wait and see.  I was also pleasantly surprised to see him score a few goals when they practiced goal kicking.

His strategy was funny.  There would be about 10 kids all trying to make goals past 3 goal keepers.  So he would wait until there was a bit of a jam, casually stroll around to the side of the net and then sort of ease the ball in when the keepers were occupied.  He’s always had that sneaky streak (he used to plot to run off as early as age 2) and I think it will serve him well here.

After the game, we went to buy cleats, a ball, and an extra pair of shin guards (of course I bought the wrong size, so I’ll be making a trip back next week).  The team will play until around November and then break until the spring.  So you can look forward to me being a soccer-mom at least until then!

Now that we’re well into autumn, here are a few things that could be fun to try with your special needs child:

Apples and pumpkins are in season!  Take a trip to an orchard if one is accessible to you.  Then, after the fun of picking fruit, you might be able to use that sense of accomplishment to entice your sensory defensive child to touch…pumpkin guts!  Eww!  Seriously, if your child has tactile sensory issues, touching something gross that he/she actually picked and worked to obtain might help get past the hump.  If not, it’s okay, you do the scooping then use one of those carving kits to work with the outside of the pumpkin.  Poking holes around an outline can be great for fine motor skills.  I’d avoid the sharp instruments, though.  If carving is still not an option, how about painting faces on little pumpkins?  That could be appropriate for children who have trouble differentiating emotions.  Let’s not forget about the apples!  How about making an apple pie with a homemade pie crust?  For a child who can tolerate the sensation and needs to strengthen fine motor muscles, kneading dough is fun and the end result is delicious.  Cooking is also an essential life skill.

Autumn is also a nice time for outdoor sports like cycling, hiking, or running.It’s neither too hot nor too cold, and in many places, the scenery is pretty breathtaking.  If you’re in an environment where the seasons don’t change, you can still enjoy being outdoors.

Finally, one of our favorite Halloween season movies is Spookley the Square Pumpkin.  The first time we watched it, I noticed that Gus became very quiet and serious.  It’s about a pumpkin that is different and is shunned by most of the inhabitants of his farm.  He has a hard time fitting in, but in the end he finds acceptance.  It’s a sweet movie with a nice message (in my opinion) for typical and special needs kids alike.

Is there something special you do with your kids during the month of October?

I read about this yesterday: ADAPT , an advocacy organization working to get better support for people with disabilities to have better housing instead of being relegated to institutions or nursing homes, had an interesting experience with the presidential nominees’ campaigns.

ADAPT took a delegation to Washington in order to meet with HUD (Housing and Urban Development), the Obama campaign, and the McCain campaign.  These meetings occurred separately.  In a nutshell, HUD was unable to help and politely communicated as such, the Obama campaign people listened respectfully.  The McCain campaign, well, they were not quite so nice.  They had more than 15 ADAPT members arrested because of their non-violent protest.

So just to be clear, there was a group of about 100 people peacefully protesting for better living conditions for people with special needs.  And the McCain campaign not only refused to even accept materials for proposals, but had the  protesters arrested.  Oh, and there was at least one injury as a result.  This is the same campaign that Sarah Palin became part of when she pledged her friendship to families of people with special needs.  I guess the same pledge doesn’t include the actual PEOPLE with said special needs.

Yep, thanks, Sarah.  You’re a real pal.

I’m very late in doing this, but a few weeks ago, Blondiewrites of Gay Lesbian Lifestyle nominated me for the Arte y Pico award. She posts about current events and poses some very provocative questions about how gays and lesbians are treated in our society. Good stuff!

Upon winning this award you are tasked with the following rules…

1. You have to pick 5 blogs that you consider deserve this award for their creativity, design, interesting material, and also for contributing to the blogging community, no matter what language
2. Each award has to have the name of the author and also a link to his or her blog to be visited by everyone.
3. Each award winner has to show the award and put the name and link to the blog that has given her or him the award itself.
4. Award-winner and the one who has given the prize have to show the link of “Arte y Pico” blog , so everyone will know the origin of this award.

So, my five blogs:

OCD Lives Here - Interesting information on the condition of Obsessive Compulsive Disorder, which is relevant to me since my son has some traits.

Epicurean Health - This blog can only be described as different. To me, it’s got an artsy kind of feel to it, very well written and somewhat eclectic.

Asdquefty’s Journal - An adult Aspie sharing his life and thoughts with readers. For anyone with an autistic or Aspie child, or if just interested in the perspective, some interesting insights here.

For a Pessimist, I’m Pretty Optimistic - This blog just makes me laugh! It’s awesomely fun!

Communication Exchange - Always thoughful and insightful, this is an excellent blog. And communication is pretty much always something to consider in this household.

Because of certain influences (which I will blog about at a later date) my husband and I decided that it was time that the children could handle some household responsibilities beyond just straightening up their rooms every night before bed. So last week they were given ‘jobs.’ Gus’s job is to sweep out the bathrooms.

How did we come up with that? Well, he’s always taking the broom to play with, so it seemed a good way to give him something productive to do with it.

I typed up a step-by-step list of instructions for his task, from getting the broom and dust pan to putting the things back where they belong. The first week (last week) I walked him through the process and showed him the most effective way to sweep (pulling the broom instead of pushing). This week, I stayed close by, but he did most of it by himself. This is a big win! But it gets better!

After doing the upstairs bathroom, he wanted to do the downstairs bathroom. Then he wanted to help me fold laundry, which I showed him how to do. Then he wanted to help put away the laundry. He even asked to help make a loaf of bread.

So what this tells me is that a) he was totally capable of handling the responsibility and b) he felt empowered by being allowed to help out and c) he has found some new things that he can be successful at. It may not be a big deal to most people, but for someone who struggles so much at every turn, it’s pretty amazing.

So don’t be afraid to entrust your child with Asperger’s or autism with some household responsibility. Having something that they can do and contributing to their world can be a great thing.

  image from ABC News

For the past few weeks, Gus’s summer-school class has been studying the history of the Olympics and the Beijing Olympics.  So when we told him he could stay up a little late to watch the Opening Ceremonies, he was more excited than I’ve seen him in a long time.  He was too tired to get much further than the drummers at the beginning, but it was still a real ‘moment’ for him.

Fortunately, this morning, NBC aired the parade of countries and the torch runner right around the time Gus got out of bed.  It was good for him to see these Athletes from such an amazingly diverse range of countries and human conditions.  He perked up when the torch entered the stadium; he’d been looking forward to that.  “This is the most exciting part - the torch runner!”  And then when the flame was finally lit, “Wow!  Cool!”

Also moving moment for the both of us was nine-year-old Lin Hao, who not only survived the earthquake in May, but went back to help save some of his classmates.  He walked next to the Chinese Basketball star, a stunning contrast. 

What would I like for Gus to take away from watching these games?  Well, I was struck, watching the parade, by what it must mean for some of these athletes to have made it to this place in their lives.  When you think about some of the war-torn countries that are being represented: Sudan, Iraq, Afghanistan, Croatia; when I look at Dara Torres (I’m rootin’ for you, girl!!) - Olympic swimmer at age 41after such a long retirement; when I look at Lin Hao - survivor and hero….These things give me a sense of what the human spirit can accomplish; there is always hope.  That’s what I want for Gus to take away from this experience of watching the games.  Anything is possible.