World of Autism

It can be hard for people with autism to change sometimes.  But Lucas needed a new winter coat, so yesterday I took him shopping. 

Late February is a good time to buy a coat, because everyone is trying to unload them.  We went into one store, and I had him try on the only one in his size.   Lucky for both of us, it was a warm and reasonably priced coat, because he really liked it: 

The sales lady and I told him how cool he looked in it, and I caught him smiling a little bit at his reflection. 

I wanted to continue to make him feel “cool” in his new coat, so I took a photo of him and told him I was going to show my friends how good he looks!  Maybe this is the answer to helping an autistic person with change; like the rest of us, maybe they just need to feel good about it!

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“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!!

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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.

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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!

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Well, Thanksgiving came and went.  I’ve been so busy since then, I haven’t updated (sorry!)

For Thanksgiving, we went to see our son Robert.  We stayed in a log cabin at a campground (kind of like Pilgrims…)

A fireplace would have made it just about perfect, don’t you think?  Of course, it had a small heater and a couple of outlets for that and our coffee pot.

 We slept here, and spent Thanksgiving day at Robert’s house, which he rents with two other young men.  We enjoyed visiting with him and his room mates, and they certainly seemed to enjoy the turkey dinner!

The next day, it was back to Delaware, a 6 hour drive.  We left all the leftovers there (just imagine 6 hours in a mini-van, with a cooked turkey and a dog, and you’ll know why the leftovers stayed there!)  Of course, that meant I got to make a second Thanksgiving dinner the following week, so we could have some leftovers, too!

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Where would we be if we couldn’t communicate with each other?

For years we worried that Lucas would never be able to achieve any way to tell others of his needs.  But thanks to the Delaware Autism Program (the reason we left our home in Virginia), he learned to communicate via the Picture Exchange Communications System (PECS) within six months of moving here.

The PECS system was developed by the first Director of the DE Autism Program for the program, so they really do it right here.  Our son went from literally not understanding why he needed to communicate to actually asking for things himself, all within six months!

Within a year of learning how to “talk” with the PECS system, Lucas began noticing that people made the same sound every time he held any given PECS card.  He began getting the connection between the sounds people made and the picture he was holding.

He began to use a few words (”cookie, cat, want”), and at the age of seven, he said “Mom” for the first time! 

He is now 17, and speech is his main form of communication.  He speaks at about a 5 year old level, and will probably always struggle to communicate, because it just doesn’t come naturally to his autistic brain. 

But considering that the “experts” said he would never speak, watching him tell a ghost story at the campfire (like, “The Hook”) is a source of pure joy!

Watching how Lucas struggles to communicate, I thank God every day for this miracle of His that allows us to make each other (and Him) aware of our wants, needs and feelings.  Whether it’s speech, sign language or PECS, communication is truly a gift to be thankful for.

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Lucas has taken various medications throughout his life. 

Whether it was to help with the physical problems he had at birth, to help his sleep issues, to assist in his toilet training or to gain some control over his hyperactivity, I’m very grateful that we had the option of connsidering different meds, and that Lucas had doctors who were alway willing to listen to us, and to try and do what was best for Lucas.

I still remember taking a Risperdal (Risperidone) study to his neurologist, and asking her to please read it because I wanted her to put Lucas on it (this was wayyyy back when no one was using it for autism).  She read the study (an early one by Dr. Chris McDougle et al, then at Yale), and agreed to write the prescription. 

Within a few months, she was pleased to report that many of her autistic patients were doing quite well on Risperidone!  Thank God she was open-minded enough to read something brought to her by a parent, and to act on it.

Lucas isn’t the only one who’s benefitted from modern medicine.  I can now keep up with him thanks to a new hip!

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How many times have you been having a REALLY bad day, and you turn on the radio to hear your favorite song?  Or to hear a song that described exactly what you’re feeling?

What a refuge music is.  From the strains of anything by Tchiakowsky to the blues of Clapton, from the jaw dropping amazement of a Danny Gatton guitar solo to the humor of Weird Al Yankovic, music is truly a gift from God.

 So before the rush of travel, cooking and chaos begins, spend at least five minutes today getting down to your favorite sounds!

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Lucas has been home sick this week (bronchitis), and I don’t know how we would have survived without our home computer!  He’s looked things up to make a Christmas list, played games and managed to sit still (and rest) at the same time.

I, on the other hand, have been able to set my laptop up right across the kitchen from him, to continue working while he’s been home ill.

Where would we be without computers?  They connect us to the world, enable us to check out new research, find doctors and even check the latest medical treatments in the world of autsm.  And of course, they help us to keep in touch with those we love, too (like our son Robert in Pittsburgh, and my husband when he’s at work). 

So I’m very thankful for the home computer.

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I thought I’d mention during this week before Thanksgiving that something I’m reallly thankful for is a sense of humor.  Laughter is very important, and it seems that many people have forgotten how to laugh today (they seem way too ready to get offended instead!)

It doesn’t matter if you’re on the giving or receiving end, the ability to find the humor in a situation is crucial to enjoying life, especially in the world of autism (which is why our funny autism awareness products are so popular!)

When I find life weighing heavily upon me, I try to remember that people in far more serious situations than me have managed to find the laughter.  So I leave you with the words of Golda Meir, and a smile:

“Moses wandered 40 years through the desert to bring us to the one place in the Middle East that has no oil…”  (oy vey)

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