A problem with having a larger family

Hotel rooms.  Usually it works out but on our way home from Virginia we stopped just outside Baltimore and our hotel room only had two beds.  There was no pullout couch.  I had brought a blowup twin for Will on the trip since I worry about him wetting the bed.  So we blew that up.  The girls were on one bed.  We were on the other and the boys were crammed on a tiny blow up mattress.

The kids played musical beds.  At one point Lizzy was wiggling too much and Bri was on the floor next to the bed which Lizzy had to herself.  When I woke up next, Bri and Will were in the bed and Lizzy was complaining that there wasn’t space for her.  I tried to convince her there was space next to Jake on the airbed.  She was not convinced and got in with me.   It was super fun.  My husband apologized profusely to everyone the next morning.

~Although, I don't really consider my family of six to be all that large.  I came from a family of seven and my husband has eight siblings.  With that reference four kids doesn't seem excessively large.  However, I consider the work my children require the equivalent of a significantly larger family.  Oh, maybe the equivalent of 8 children -- and 3 of those are young and demanding, 2 are hormonal teenage girls with a penchant for yelling at me, and 2 are video game obsessed boys.  All I can say is thank heaven for Bri!

Operation Beach Bum

I want my kids to try things when they’re young. I think if you’ve already tried something you are more likely to do it again. That’s why I signed them up for skiing lessons last winter and a surfing lesson last week. Although, I seriously underestimated how hard surfing is.

On her very last try Bri surfed for about twenty seconds. Her most spectacular surfing occurred earlier. She somehow twisted around and was sitting down of her board surfing backwards. Lizzy did a lot of knee and one leg surfing. And Jake after a spectacular wipeout that included getting hit by his board twice decided he had surfed enough and sat out the rest of the lesson.

A Lazy Afternoon Exfoliating at the Autism Day Spa

[Guest posting – while Mother of 4 is on Vacation] 

While my wife was watching the other kids take surfing lessons, I kept an eye on William as he played in the surf.  This is a favorite activity, but William has a unique low-energy style of playing in the ocean.  He wades out until the water is knee-deep and sits down.  He lets the incoming waves push him over, then lays there.  He likes feeling the waves roll him back and forth, and the undertow wash the sand out from under him.  I tried to think of a name for it; “wounded walrus,” “dying dolphin” and “bobbing blubber” came to mind.  It’s a gentle, relaxing, sandy exfoliation, while working on his plumbers’ tan.  Will can do this for hours.

Occasionally the seagulls would swerve close by, to see if the waves had washed in a big meal.  William’s body shape means his shorts often sag.  At the beach he’s usually showing some crack.  His unique swimming style accumulates a lot of sand in his shorts.  About 20 minutes into the swim, Will decided clothes were no longer necessary and stood up to take his swimsuit off.  I caught hold of his shorts when they were at his knees, which is a good thing, because once one leg is out it becomes a much harder process to reverse.  “No pants,” he said firmly.  “Yes, you must wear pants,” I replied, conscious of the many beachgoers around us now exposed to a very white bum. “Pants are ALL DONE!” he said emphatically.  As I struggled to pull his soggy shorts up, he expressed his displeasure by readying a double tricep pinch.  I could either endure the pinch and keep his shorts on or save my arms.  I chose to take the pinch while I pulled his shorts back up.

Will would occasionally reach into his shorts to remove a handful of sand to lighten the accumulated load.  One time after he was washed the sand away he held up a small object between thumb and forefinger for inspection.  I thought it was a crab shell or a pebble at first… but this is what he held between his fingers:

Wiki Image

“Lobster is all done,” he said, dropping the marble-sized object into my palm.  I thought he meant it was dead, but no, it was very much alive and immediately began kicking to try to dig back into the sand.  By “all done” he meant “I am done having this in my pants.” 

I had to look up what the ugly little beast was – “lobster” was a great approximation.  All it lacked were claws.  Emerita Decapoda Anomura (if you want the Latin name), commonly called a “mole crab”, “sand flea”, “sand crab”, “beach hopper”, or “lookie cookie.”  They are a genus of hard-shell, oval-shaped crustaceans found on both coasts.  I wouldn’t want one in my pants, either.

Visiting the Redneck Riveria

I read that in a guidebook and thought it was hilarious! We are at Virginia beach with Marcy and Tom. I figured we'd take it by (autistic) storm. On Monday we went to the Air and Space museum. The kids loved it. It was really hands on. Will enjoyed it too. He liked sitting in the kids' plastic airplane. He also was very interested in the flight simulator. I took him upstairs to show him some of the airplanes. I took him inside an airplane to let him play with the controls. When he realized where he was he said, "No plane!" and RAN away. I had to chase him down and promise him he didn't have to fly.

On Sunday, we drove past a small airport. I told Will to look at it. I felt a finger poking my back. Then another poke. "No airport." I'm going out on a limb here but ... I'm getting the idea that Will isn't thrilled with flying.

Pennsylvania

We visited some friends in Pennsylvania over the weekend. It was nice to see them. Driving for 6 hours with a moody Lizzy in the back seat -- not so much.

Third Day

Four of the eight kids in Will's session rode on a two wheeled bike today!  Peter did.  It was great!  I knew he would love it.  Three of the kids I told about the program rode without training wheels today.  I am thrilled.

Bri is so in love with the program that she helped with an extra session and when she was talking about this morning referred to "my kid Liam."   It was adorable.

I really hope Will is ready tomorrow.  I bought him a new bike today and he was interested.

Second Day

Today was Will's second day at Lose the Training Wheels.  He did better today.  Yesterday, he was exhausted by the end of the session.  He kept asking for breaks.

But he was a trooper and persevered.

Although, sadly there was some pinching. I showed the volunteers my "wax on," "wax off" moves.  Because that's the way I roll.  I think I need to buy them some chocolate.  Because they are AMAZING!  And I'd like to publicly announce that I love Frank and Elyssa.

Bri is volunteering in the morning with an adorable little boy who is driving down from New Hampshire every day. 

Autism as Identity

What constitutes identity?  Naturally one’s personal identity is influence by one’s racial, ethnic, religious, and national background.  It is certainly influenced by marital status, educational background, occupation, socio-economic status, health, appearance or by having a particular interest or talent in sports, arts, music and so on; if a disability exists obviously it can have a tremendous effect on how one views oneself and how the world views that individual.  

I often use autism as an adjective to describe my son’s behavior because to anyone who is familiar with autism that gives that person a context for understanding a lot of his behavior.  They get it.  If I mention self-selection in reference to food choices or stimming that person doesn’t require lengthy explanations because they understand how those behaviors look in many people with ASD.

Sometimes AUTISM seems to be the overwhelming characteristic William possesses.  Certainly I can understand how someone who doesn’t know him would consider it to be his identity.  But anyone who knows many people on the spectrum knows that there are as many differences between people on the spectrum as there are between people who are neuro-typical.  While people with AUTISM have similarities they are not identical.

A person’s identity is tied up in what that person and what society deems important and differentiating.  In the US, an important identifier is one’s occupation.  When my husband was in Spain he learned quickly that a job is just how someone made money it wasn’t as relevant to identity as it is here.

In the US, identity is often tied to one’s occupation, socio-economic background, religion, political ideology, racial or ethnic background, marital status and disability if one exists.  My identity is tied up in my religion, family, my occupation (mother), my membership in the special needs community, my politics, my racial background, etc.

People with ASD who are higher functioning have occupations, more varied interests, political affiliations, etc. things that society deems identifiers.  People who are lower functioning have fewer interests, are less likely to have jobs, have more maladaptive behaviors that separate them from society and less interaction with society in general.  And thus society views their identity as autistic.   As William is lower functioning it’s understandable why society views his identity as autistic.  And perhaps it’s appropriate since aside from his physical appearance it is his most recognizable difference.

Autism as identity is, like any other identity, a social construct.  I believe that everyone has identity separate from any physical or mental disability.  Separate in fact from any racial or ethnic background.  Separate from any status we have earned or been born into.  I believe we all existed as a spirit or intelligence prior to being born.  I believe that all our spirits had personality, thoughts and beliefs than influences our actions and life.  I believe that every person has value because they exist.  No differences, no disability effects in any way the intrinsic value of an individual.  I believe we are all children of God, all equally valued and loved.

This post started as a diatribe against viewing AUTISM as the identity of an individual.  But I realized that identity is just a construct made up of pieces of what an individual or society deems important or differentiating.  Autism separates one from the group -- through personal choice, ability to interact with the group and through the group’s unwillingness to interact with the individual.  Autism is not the most important identifier but it is important.  And thus it is understandable that society and an individual can view autism as a defining part of identity.

I have become THAT mother.

You know the one.  The mother, who rolls out of bed, pulls on whichever pair of pants she steps on first and is set for the day.  I might pull a brush through my hair but if the kids don’t do whatever self-care task I assign, they might go days without bathing or brushing their teeth.

It wouldn’t be so bad if they didn’t lie about it.  Who lies about brushing teeth!  It’s not illegal, immoral or unethical.  It takes more energy to lie to me about it than to brush them in the first place!  Not Brianne, of course, she is the child that can empty the hot water tank in a single shower.  It’s the others.  Fortunately, they all seem to be interested in deodorant.  They might be unwashed, unbrushed and unkept but at least their armpits don’t stink.

My last day of semi-freedom is today.  Will’s summer vacation starts Monday.  I decided I had to go to the grocery store.  I was downstairs putting on my flip flops.  Lizzy ran after me calling, “Wait for me!  Wait for me!”  I tried to talk her out of coming because she slows me down.  But the five dollars in her wallet was begging to be spent, so she came.

We were in the candy aisle trying to decide what to get for our trip to Virginia Beach.  When an older lady came up to us, “What’s in her hair?” she asked in horror.

I, instantly assuming it was a bug, looked at Lizzy’s hair in alarm.  It was a dried clump of food.  “Maybe it’s peanut butter” came out of my mouth . . . from where I remain unsure as it clearly wasn’t peanut butter.  But there are times when my mouth dis-attaches from my brain.  I looked at Lizzy’s unbrushed hair and realized that I hadn’t even noticed that she hadn’t brushed it.

I’ll admit it.  I was a little embarrassed and started picking at the clumps in her hair.  Lizzy shooed me away.  And we looked at each other through a mixture of embarrassment and irritation.  How did this happen?  I decided that it was Lizzy’s fault.  After all she won’t let me do anything to her hair.  Right . . .  doesn’t it have to be her fault?

Jake, Will and a Green Smoothie

Since, I started making green smoothies for my family to eat certain things have become apparent:  1. my kids are even odder than I thought, and 2. Jake is occasionally blindingly brilliant.

On Thursday, I’d whipped up a green smoothie of spinach, strawberries and bananas (I realized I don’t like strawberries in it).  But unfortunately I ran out of bananas so Friday I made a spinach, strawberry, mango smoothie.  I assume Will agreed with me that I had not come up with the best combination but I decided he was going to finish his.  After all – I’d drunk my whole glass.  I kept prompting Will to eat his smoothie.  Then Jake piped up, “Will, first smoothie, then I’ll give you my green pepper.”

This was brilliant for two reasons.  First, although, I think Will likes green pepper I don’t know that it’s a very preferred food.  If I was doing a first/then with Will I probably would have offered a corn chip.  Jake proved that I can use green pepper for a reinforcer, which, honestly, had never occurred to me.  And secondly and probably most important from Jake’s point of view, Jake got out of eating his green pepper by giving it to Will.  Thus not only is he helping me, Jake is creatively avoiding a non-preferred food.

Once Jake gave Will a piece of his pepper, Will started dipping his pepper in the smoothie.  Which excited me because obviously someone at school has brought veggies and dip and Will was imitating what he has seen. 

 

And in the background Bri and Lizzy were arguing over who got to drink what was left of the smoothie.

Translating “All Done”

“All Done!” is one of the most useful phrases in Will’s vocabulary.  It can mean: “leave me alone”, “back up or I’ll pinch you”, “dispose of this please” or most commonly “no, I do not want to wear pants.”

Discovering Saturday Morning Cartoons

I made a decision years ago when my children were really young to restrict TV shows.  I steered them towards PBS almost exclusively for programming.  When we had cable they added Disney and Nickelodeon.  But it made me crazy to think about the hours of mind-numbing Hannah Montana and assorted crap they were watching.  So, I cancelled cable.   

I mourned the absence of Bravo, HGTV and E! but I moved on and forced my children to as well.  That decision is why on a recent Sunday Jake watched a couple hours of Planet Earth and why he loves Scientific America.

Unfortunately, a couple of months ago he discovered that cartoons are on at 9:00pm.  And he and Will started watching them instead of Scientific America.  Then to add insult to injury PBS changed its’ summer programming schedule and now that slot is filled with music. 

PBS – Will is not amused (or interested in your new offering).

Last night I confiscated the kids' laptop and Jake woke me up when he came into my room in an attempt to retrieve it.  I sent him out.  Jake turned on the TV and discovered that such a thing as Saturday Morning Cartoons existed.  Since he is bound to tell Bri and Lizzy the secret is out.

How ironic that just three weeks ago, I laughed to my husband that our kids didn’t know about Saturday morning cartoons; and I was torn between laughing hysterically and fear that I was somehow making it more difficult for them to relate to their peer group.  I guess that internal conflict is now resolved.

I am on FIRE!

Monday we got some very sad news.  MyGym is closing.  Will has attended a weekly class there for five years.  I’m very sad because there really isn’t much available for children with severe needs.  I left a voicemail on Monday for the Youth and Family Director at the Y about creating a class for kids with special needs.  I talked to her and the Executive director today about the class and they’re interested.  Then I called the Autism Alliance and they’re willing to help.  So, I’m hopeful.  But I want more than just one class; so, I also called the person who runs all the music classes at the Y and asked her to have a class specifically for children on the spectrum.  We are meeting next week to discuss it.  I’m pretty sure that the music class will work out.

And since I was on a roll I called a go-getting friend and asked if she would help me start a community center for adults with autism.  We’re going to start touring existing facilities after summer vacation.

Marcy – I volunteered you to help.  Thanks.

Captured State

When my father-in-law was visiting he mentioned an article he had read that referred to Mexico as a captured state.  I was not familiar with the term.  In 2000, Joel S. Hellman, Geraint Jones, and Daniel Kaufmann wrote "Seize the state, seize the day": state capture, corruption, and influence in transition for the World Bank.  They found that “[s]ome firms in transition economies have been able to shape the rules of the game to their own advantage, at considerable social cost, creating what the authors call a ‘capture economy’ in many countries. In the capture economy, public officials, and politicians privately sell under-provided public goods, and a range of rent-generating advantages "a la carte" to individual firms. 

Now lest you think a captured state can only refer to something outside the US here is an article authored by Gregory Hooks from the American Sociological Review that refers to the U. S. Department of Agriculture as “an agency captured by a privileged interest group.” 

Fabulous.  Of course, I knew it went on but now I have a term for another thing that pisses me off and more stuff I should read.

Saturday

Will went to JORDAN’s birthday party today.  His name deserves to be capitalized because Will has been writing JORDAN’S name on as much as his school work as he can get away with for the last three years.  And he’s called multiple people JORDAN (usually with his hand held sideways and cupped over his mouth) for years.  When we arrived at Build-A-Bear JORDAN ran up to Will to say hello and help him choose a bear.  Will is not really into stuffed animals and I think that store is visually overwhelming for him.  I think he’d rather spend the time lying on fake tub that blows air – and, oh yes, I let him – trying to type consecutive years on the computer or playing with the stuffing machines.  But Jordan (I’ve stopped capitalizing his name now because it was annoying me) took Will over to the wall and made suggestions.  Will choose the same animal Jordan did.

Imitation!

Jordan dressed his owl as Woody and Will, with prompting from Jordan, dressed his as Buzz.  Then the kids went to the food court for lunch.  I met a new student at Will school who plays the guitar, and loves rock music from the 70s.  He hugged Will and my heart melted.  Michelle one of Will's old therapists from school showed up and Will started calling me Michelle. (Darn it!  He hadn't called me Michelle very much during the last year and I hoped it was fading off completely.) After two hours Will was done and in the frazzle of chasing him around the food court for the second time I took home someone else’s bear.  But I dropped the bear off at their house so all was well.

Then we took the kids to Salisbury beach.  It was a great beach; although, I was a little nervous about sharks.  Every year there are more sighting of Great Whites in Cape Cod but I didn’t say anything to my kids because I’m trying not to pass on my irrational fears to the next generation.  

Best quote of the day:  On the way home from the beach we stopped to get something to eat.  Lizzy, referring to her fries, said in disgust, “they taste like potatoes!”