My Autism Insights

The approach of March in the colder parts of the U.S. can bring with it some wacky behavior in all of us  because of a general ‘enough winter’ attitude coupled with a hint of spring fever.  For individuals with special needs, who are often more sensitive than the average person to seasonal shifts, it can be a particularly trying time.  Gus seems to be in dire need of strenuous physical activity, but it’s still too cold for him to want to spend much time outside.

So we went on a little adventure today.  I found a stationary bike that is the perfect size for the house AND for everyone to be able to use, for a bargain on craigslist.  We went to pick it up, taking a lovely scenic drive over a treacherous mountain pass.  We won’t discuss my paranoia - I had several escape scenarios in case we happened to stumble upon a suburban Jason.)  So now, Gus can get his large motor muscles all worked out (he’s loving all the sensory input) and he can play his Pokemon game at the same time.  It’s a win-win situation all around.

Have you gotten any particularly sweet deals on equipment for your special needs child?

P.S. Sorry for the blurry photo - he was moving and I was trying to catch him in a relatively stable position. I didn’t do so well!

Autism is all over the media these days.  I don’t think a day goes by now that someone, somewhere isn’t talking or writing about it.  It wasn’t always this way; remember when you barely even heard the word?  Yet now there are those who seem to think it’s okay to capitalize on others’ hardships (that’s always been the way, maybe), using the rise in autism awareness as an excuse to ridicule/chastise/insult…I recall the stories over the summer of kids with autism and families being treated horribly.  I remember reading the comments on Internet articles that made me wand to go around the country smacking people for their ignorance.  But it has dawned on me that they really have no clue.

These people seem to think that if you are a parent of a child with autism, you must fall into one of two categories.  If you are still at the point of anger/sadness/fear, then you must just be seeing attention? money? a foundation to send your family on a Parisian vacation?  If you’ve come to the point of acceptance where you can acknowledge the challenges of autism but can also appreciate the awesomeness of your child, then you must be - I don’t know - Pro-Autism? (Which is probably something akin to Pro-Abortion - and an equally ridiculous label.)

What it comes down to, I think, is simply that these (many) ignorant people just have no frame of reference and can’t even begin to understand autism.  You might be thinking, ‘there’s no excuse for ignorance these days.’ But, isn’t there?  Come on, we all know how accurate the Internet can be, right?

Anyway, I’ve come to realize just how easily I could have been one of those people.  Some days, life with Gus has been like a Parisian vacation: traveling around a beautiful country where I don’t speak the language.  With some guidance it can still work out all right, but without it…could be pretty awful.

Let’s look at one scenario: Take a person who had very little experience with babies and small children (like me). This person had a child and knew from the beginning that her son was very sensitive, but didn’t think much of it.  And he was awfully cute, so she just adapted and made sure everything was quiet and not upsetting to him.  Anyway, newborns weren’t supposed to sleep, right?  Mother and son grew very close and developed their own internal communication.  It didn’t seem strange that he never asked for things; he had lots of small words; he was acquiring language.  Didn’t all kids repeat those words over and over?  What else were they supposed to say?  And she knew what he wanted most times, so he didn’t have to ask.  It did seem a little odd that he rolled instead of crawled, but everyone develops in different ways, so no big deal, right?  She thought it disconcerting that when his entire daycare class was at one end of the play yard, he’d be at the other end - alone.  But then again, she often liked to be alone; maybe he was just like her.  It was all good for about eighteen months.  Then when the ‘meltdowns‘ - hitting, screaming, kicking (not great for a pregnant belly), wailing inconsolably - started, this mother found herself at a crossroads.

She could head down the path marked, ‘Bad Bratty Kid - Discipline,’ or the road marked, ‘Normal Terrible Two’s - Proceed as Usual,’ or the way marked, ‘Get Help.’

Do you see how easy it is to end up down a negative path?  With no direction, no frame of reference, or even worse, bad guidance, anyone could end up down that mean, intolerant, bad road.  I had no frame of reference, but I was fortunate to have people around me who did.  They were my compass.

Unless they are scouts, how many people always have a compass with them?

I guess my point is that I’m feeling less angry at the ignorant, intolerant people of the world who say such awful, judgmental, hurtful things about people on the autism spectrum.  I’m feeling a tiny bit more tolerant, a little more empathetic.  The behavior is not right, but more worthy than pity than a beat-down.  At least that’s where I am today.

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?

As I was randomly looking netsurfing for something to blog about today, I came across an interesting site: Retrain the Brain .  I’m always on the lookout for ways to help Gus build his focus without medication so the headline “Get Kids Off Ritalin” caught my eye.  The theory behind this program is to teach Palmer method penmanship (remember that??) along with special music to develop the left (analytical/reasoning/executive function) brain.  It seems to make sense to me, but I don’t have $90 to spend on a handwriting program.

So I went and did some research on the Palmer method and found a free version of Palmer’s Penmanship Budget .  We’ve also been trying having Gus do his work with headphones on and his teacher sent home a copy of the CD they use in class.  I think another experiment is on order.

Best case scenario,  the combination of music and handwriting practice will help him.  Worst case scenario, he’ll get some extra practice in an area he needs it.  Nothing to lose.

If anyone has any experience with this theory or with that particular program, I’d love to hear more!

  view from about a mile and a half into our bike ride

Occasionally I come up with a good idea.  The six mile family bike marathon today was one of them!  After some nasty storms yesterday and last night, we were treated to an absolutely magnificent day - warm but not so hot as to be draining.  We set out at eight and drove over an hour to the meeting point for the ride.  Once all the families (thankfully only about 4 or 5) were assembled, we formed a caravan and drove to the actual starting point of the ride.

We ended up bringing up the rear of the group, which I expected.  MM’s got little legs and Gus still struggles with a little weakness.  But it really didn’t matter - if there was a day for taking time and meandering along the breathtaking path, today was it!  MM wanted to speed ahead, so I rode with her for the first half of the ride.  Every know and then I peeked over my shoulder and could see Gus and my husband far behind us, but still rolling along.  One of the staff was nice enough to bring up the rear with them, and one of the organizers doubled back to check on us a few times.

MM actually stopped just short of the turning point, but Gus wanted to go all the way.  What he lacked in speed, he made up for in stamina.  He did the full six miles!  Go Gus!  MM did about 5.5 miles - still excellent for a five year old!  Then we headed back.

I rode with Gus on the way back because he was tired and was starting to lose focus.  He also was fascinated by the water and kept going way too close to the guard rail.  He tried to climb over a couple of times.  The staffer, S., was very helpful and supportive - nice to know there are some understanding and just basically kind people in the world.  It was slower going, but he kept plugging along.

MM was a little cranky because she was hungry and tired (I’M NOT TIRED!!) so we switched off again, and I rode with her almost to the finish, using the promise of any snacks she wanted as motivation.  By then the organizer had finished and come back for us again - the assistance and support were very welcome.  What nice people we met today, I tell ya!

So now, my kids can both say they completed their first (and for MM probably her last) kids’ marathon.  I’m really proud of them both, especially considering they haven’t been riding very long or very much.  I could not have bought a better day.

I can’t recall a day in the past year, maybe longer, when I haven’t read or heard about the word ‘vaccine’ in relation to autism at least once a day. I tend not to dwell on the issue because both my kids have had their full complement of vaccinations, so it’s a moot point, and since I’d much rather the momentary pain of a flu vaccination over the weeks of misery that the entire family suffers when one of us gets sick, I also make sure that everyone gets a flu shot every year. We’re a vaccination family. So why am I mentioning it today?

Well, I read an interesting post at Left Brain/Right Brain about measles this morning, and it got me to thinking.

I have two friends who are expecting their first babies withing the next two months. They both know that we have an autistic child. If asked about vaccinations, what should I say? One school of thought believes that vaccinating children is almost certain to doom them to the nightmare of autism (not my words, and by the way, I don’t consider autism or my life as an autistic child’s mother to be nightmarish - nightmarish is a word I reserve for Call of K’thulu). But by following that line of thinking and not vaccinating, that leaves the child vulnerable to potentially deadly diseases. Anti-vaccine folks maintain that measles was wiped out, yet the number of cases has been growing, and there have been at least two deaths.

What’s worse? The remote possibility of catching and dying from measles or the even less likely possibility of a vaccination contributing to a diagnosis of autism? Hmm…

May I just point out that Gus exhibited signs of sensory dysfunction and developmental delay pretty much from day one? So that, for me, blows the vaccine-autism link right out of the water. Can I also mention that my daughter was vaccinated in exactly the same way as her brother, two years after he was, and has shown only the slightest difficulty with fine motor skills, which is a problem that runs through my husband’s family? The answer is seeming much clearer now.

I think it’s fairly nuts to tell people not to vaccinate their children, especially in today’s world. The fact that so many parents, out of necessity, send their sick kids to school is enough of a reason for me to make sure my children are as protected as I can make them short of arming them in full plate mail (the seams in the armor would allow germs in anyway). And there’s still that pesky issue of autism and vaccinations not being linked in any credible studies. But, even if by some miracle of science, the link was somehow made, is autism really a worse fate than severe illness that could lead to death? Sorry, but I’ll take my Gus with all his quirks any day.

And if I haven’t been clear enough, if you’re wondering what to do, please vaccinate your children for their sake and for the sake of all the rest of our kids who should not have to be exposed to a real epidemic like measles when it can be avoided. If it makes you feel better, split up the vaccinations. Your child will get a few extra pokes and you’ll have a few extra copays, but that’s not the worst thing in the world. It’s worse to do nothing. You want ‘greener’ vaccines and a change to the schedule? I find that less offensive than just tossing them out the window altogether.

I think I’ll go back to straddling my fence now. Thanks for reading and please feel free to let me know your opinion.

Edit:  For more on this today, check out Autismvox .

After dinner we decided to take the kids out for a while.  We almost never go out after dinner because it’s shower/bath/clean-up/bed time.  But they were a little wired, so we figured a little exercise wouldn’t hurt.  I had the idea to see if Gus wanted to try riding his sister’s two-wheeler – I had taken the training wheels off her old 12 inch to let her try riding without them, but she’s not quite ready.  He got on, and I’ll be damned if he wasn’t riding around our little parking lot on his own by the third try!!  Gus is made of awesome!

Once we did some riding (and much celebrating) down the street, we went and got his bike, took off his training wheels, and we were off!  Wow, can that kid fly!  He’s a little shaky getting himself started, but another day will solve that!  He’s a natural!

I’m so proud of him, not just for being able to do it, but for even trying.  And to see the grin on his face because he succeeded at something – absolutely priceless.  Gus, for the win!!

I learned of some great tips for teaching kids to ride from a discussion at AutismVox.  The site with the instructions is Asperger Support in the UK.

I lost track of the days again, so my Thursday post is a day late.  Sorry!  Anyway, here’s what I’m thankful for this week:

1. I am thankful that Gus is seeing the doctor on Monday and we can take him off this medication.  It usually takes a long time to get in to see this specialist, so we got pretty lucky.  If I never hear the word Strattera again it will be too soon.

2. I am thankful that I was able to get both kids registered for swim classes!  Gus loves the water and it has such a calming effect on him.  And we’re trying lessons late in the day so that he can relax a bit after school before heading out again.  He was pretty excited to be starting, and I’m sure his sister is going to have a wonderful time, too.

3. I am thankful that we got the same bus driver for the summer that we had last year.  I read over at Autismvox about a driver who got ‘lost’ with a nine-year-old autistic boy.  You just never know about people, so the fact that we have a very trustworthy driver this summer takes a huge load off my mind!

Please comment with your thankfulness below, and I’ll try to pay better attention to the calender next week!  Oh, and Happy Independence Day!