World of Autism

“IT WAS TWENTY YEARS AGO TODAY…”

What better words than those of the Beatles to announce the birthday of Lucas’ big brother Robert!

Since the beginning, Robert has been Lucas’ best friend and one of his best teachers!  Of course, having Lucas for a brother has also taught Robert a lot.

Robert grew up understanding that sometimes people need help.  That understanding has made him into one of the finest people I have ever known. 

He was the one who always stood up for the guy everyone picked on in class, and the parents of every girl he’s ever dated are always SO disappointed when they break up, telling him, “You’re the nicest guy she’s ever dated”.

I’ll never forget when he was about 8, and we were at Grammy and Grampa’s house for Christmas.  I was helping Robert wrap his present for Lucas, and he picked out a name tag that said, “he’s my brother”, with a picture of two boys on it. 

It’s pretty obvious why Robert picked that card, but of course, it immediately brought to my mind the song “He Ain’t Heavy, He’s My Brother” by the Hollies:

The road is long,
With many a winding turn
That leads us to who knows where,
Who knows when?

But I’m strong,
Strong enough to carry him;
He ain’t heavy, he’s my brother.

So on we go,
His welfare is my concern.
No burden is he to bear,
We’ll get there.

For I know
He would not encumber me;
He ain’t heavy, he’s my brother.

If I’m laden at all,                             
I’m laden with sadness,
That everyone’s heart
Isn’t filled with the gladness
Of love for one another.

It’s a long, long road,
From which there is no return.
While we’re on our way to there
Why not share?

And the load
Doesn’t weigh me down at all;
He ain’t heavy, he’s my brother.”

It seems that many of Robert’s attributes are common among the siblings of people with autism and other disabilities.  Through LucasWorks and through work in various advocacy groups over the years, I’ve met many siblings of people with autism.  Almost without exception, these siblings are kind, patient, and wise in ways that many adults never achieve. 

Just recently I met another one, Amelia Bennett, who wrote the most beautiful book called “The Little Composer”, which we now carry at LucasWorks.  Amelia’s insights into explaining autism show a sibling who truly loves and accepts her brother for who he is, giving the rest of us a joyous lesson in love.

Robert lives far away right now, and while we miss him every day, we know this is what growing up is about.  So today I wish a very Happy Birthday to one of the finset people I’ve ever known, and wish the rest of you had the honor of knowing him, too!

Happy Birthday, Robert!!

 

 

Tags: Daily life by Lauren
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It’s always something.  Right now, it’s Lucas’ wisdom teeth.

His dentist says they’ll need to come out, since the bottom ones are coming in crooked, and the top ones don’t have enough room anyway.

So I called the oral surgeon Lucas’ dentist recommended, and explained about Lucas and his autism.  I told them that we were looking for someone who was familiar with autistic people.  I told them that we wanted a surgeon who would work with us AFTER the surgery, when Lucas had stitches, holes, soreness, etc. in his mouth that needed to heal.

Well, of course I was told that this surgeon deals with all kinds of disabilities, and would work with us to ensure that Lucas got what he needed.  Great!  I made the appointment.

The appointment was yesterday, and upon arrival at the surgeon’s office, we were given a booklet explaining all about having wisdom teeth out.  It talked about not eating or drinking anything after midnight the day before the surgery if the patient was having general anesthesia, which Lucas’ dentist and we felt would be best.

It also talked about pain and swelling after the procedure, and about what NOT to eat until the incisions had healed.

They took a lovely “panoramic x-ray” of Lucas’ mouth, and then led us back to the exam room.  The oral surgeon came in and told us what he would do.  He also said that he doesn’t operate until after 1:00 in the afternoon, and that Lucas would be treated just like all his other patients after the surgery.

So basically, we’re supposed to keep Lucas out of the fridge, the sink and all the food for about 13 hours before the surgery, and after it’s over, there will be no thought given to an autistic kid doing his best to (pick one or more):

1. Pull out the stitches in his mouth.
2. Eat things he shouldn’t.
3. Beat himself up trying to make his swollen face look normal, etc.

Needless to say, once again I feel taken advantage of by the medical profession.  I don’t mind if they just say, “No, we’re actually clueless about autism!”  But now we’re out money, and will be paying our own way to take him somewhere else (and who knows if the next place will be any better!)

I made an appointment with another oral surgeon up north for February 12 (which insurance won’t cover because they’ve already covered yesterday’s appointment.)  We’ll see how that one goes.

Tags: Daily life by Lauren
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Okay, my first New Year’s resolution is to write more often (at least 2 times a week!)

We had a marvelous Christmas, with Lucas’ brother Robert home to visit.  Robert actually came home the Thursday before Christmas and had to leave 2 days later, Saturday.  So Santa came the night of Thursday, Dec. 20th!

Lucas had asked Santa for a model of the train from Back to the Future III, which of course, no one makes.  BUT…someone had designed one that could be cut out and assembled from paper, and had posted both the pieces and the instructions online.

We thought it might be a nice project for Lucas, his dad and I during Christmas vacation, so I printed out the 367 train pieces on card stock, and Lucas received them with the 101 steps of instructions, along with a note from Santa explaining that Santa thought we should assemble it together.

Does Murphy’s Law reign supreme ALWAYS??

Lucas’ fine motor skills made it impossible for him to cut out many of the train pieces, and Alan’s eyesight (now that he’s OLD) made it impossible for him to cut out ANY of the pieces.

So for 9 long days, I spent between 4 and 7 hours a day cutting and taping a train together for Lucas.  (This, in spite of all the end-of-year business stuff I needed to do, and the reading I had planned to catch up on!)

In spite of all the tape you see in these photos, the train didn’t turn out half bad.  Lucas loves it, and it fits on his tracks, behind one of his many DeLorean models. 

Another interesting and unusual Christmas, thanks to Lucas!

Tags: Daily life by Lauren
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