World of Autism

My Uncle Frank passed away on August 24.  He was a great man and a wonderful artist.  He had worked at the Smithsonian Institute in Washington, D.C., and helped to inspire an appreciation of art AND of history in me and in others.   He’ll be missed by all of us.

Uncle Frank was my mom’s brother, and he had polio as a child.  He spent a year in the hospital when he was eleven years old.  Then when he was about seventeen, he spent another year in the hospital. 

From the age of eleven, Uncle Frank’s life was one of constant pain.  His back became misshapen, and he had to endure a series of amputations to his foot and leg, all traced back to polio.  This on top of spending 2 years of his life in the hospital, which I can’t even imagine.

Having known someone like this all my life, I wanted to share these things with everyone who has struggled over the “vaccine” issue. 

I don’t pretend to know if there’s a connection between vaccines and autism.  I can’t offer advice to anyone about it. 

But I can’t even begin to imagine how miserable life would be if I didn’t get Lucas vaccinated, if he was still diagnosed with autism, and if he got polio…

How could he deal with an extended stay in the hospital?

• He wouldn’t understand what was happening, and there would be no way to explain it to him.
• He would probably need to be strapped to the bed or medicated ALL THE TIME.
• He’d fight all hospitals and doctors for the rest of his life!

What if, like Uncle Frank, he had to spend ANOTHER year of his life in the hospital?

• See above, only this time he’d be bigger, stronger, more angry, more scared, and would fight harder to keep from going back.

He’d be in constant physical pain every day.

He’d either cause massive damage to himself as he banged his head, etc., in attempts to stop the pain, or would have to be medicated continuously to help ease the pain so that he WOULDN’T hurt himself.

What if he had to have ANYTHING amputated?

• He’d have to endure yet another hospital stay, and more pain.
• Then he’d need physical therapy to learn how to compensate for the amputated limb.
• There would be MORE frustration as he dealt with things like “phantom sensations” (for example, nerve endings at the site of the amputation itching, even while there was nothing there to scratch). 

I have no doubt that both he and I would lose our minds in a situation like that.

Polio highly contagious; it can actually be caught from an infected person’s sneeze or cough.  And right now, there are about 12 million people in the U.S. who didn’t have the required medical checkups when they entered the country, because they didn’t come through correct channels.  We don’t know if any of them are carriers of polio or other diseases.

What would happen if I chose not to have my kids vaccinated, Lucas had autism anyway, and either of them caught polio?

I’d never forgive myself. 

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The other day, Lucas found an egg from a fallen bird’s nest while walking Dixie the dog.  It had a little crack in it, but was otherwise okay.  We put the egg out of Dixie’s path, but Lucas was very concerned that I tell his dad about it so that Dad wouldn’t let Dixie get to it on their noon walk.

Later that morning, I found Lucas sitting quietly in our living room, holding the egg .

He had gone outside and rescued it, bringing it inside and placing it carefully into a small nest that I had found a couple of years ago.

He spent the better part of the morning staring at that egg, hoping it would hatch, no doubt.

It was so cute, seeing him sitting there so quietly, just watching that egg to see if it would hatch a baby bird.

But since the egg was cracked, I knew it wouldn’t be hatching.

 So in an effort to gently detach Lucas from it, I explained that eggs can’t hatch unless they’re kept very warm by the mommy birds. 

Lucas may be autistic, but he’s not stupid!  He placed both the egg and its nest into a bowl under one of our living room lamps, which he then turned on.  “Keeping warm” was his response when I asked what he was doing.

Okay, how do I tell this kid that we can’t keep an egg inside, because eventually either the cat will get it or it will begin to stink? 

I came up with a brilliant idea, and explained to him that I was worried that the mommy bird might be trying to find the egg.   He agreed that we should take it outside, and placed it into a windowbox, where the mommy bird could find it but it would be safe from Dixie.

Whoever says these kids aren’t capable of empathy is dead wrong, because you can see the concern in Lucas’ face for that little egg!

Needless to say, for the rest of the day Lucas was outside every few minutes, checking on “his” egg. 

Early the next morning, I took care of the egg.  Of course, when Lucas awoke, he immediately went outside, where he discovered the egg missing.  I asked him what he thought happened, and he said “Mommy came back” in a very satisfied tone of voice.

It’s days like these that I LOVE being Lucas’ mom.

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What do you give a young man for his 18th birthday when he’s autistic?  A party is out because he has no friends.  He’ll never drive or date, so there’s no car stuff or special night out with his girlfriend.

 

Lucas loves the “Back to the Future” movies and everything that goes with them.  He has soundtracks, cartoons, posters, t-shirts, and several model versions of the DeLorean “Time Machine”.

 

So for his 18th birthday present, we took him to a DeLorean car show in Gettysburg, PA last weekend.  We spent three days with some great people (including some of the movie folks), hundreds of amazing cars, one very special car and a kid who couldn’t stop grinning…

 

Honestly, we had some major concerns about taking Lucas to this show.

Think about it:

• Taking Lucas into an unknown setting filled with hundreds of strangers.  (We had no way to prepare him for what to expect since we didn’t have a clue.)

• Lucas surrounded by many, many VERY EXPENSIVE CARS (many of them in perfect condition) and their owners.  (This one was too scary to even contemplate…I went on pure faith here.)

• Oh yeah, and what if the people from his favorite movies weren’t very nice?  (We didn’t want his heart broken by someone he really looked forward to meeting.)

But we needn’t have worried.  Lucas had no problems at all, because EVERYONE we met was kind, patient and caring toward him, helping him to feel accepted and comfortable in that strange environment.

 

 

We saw DeLoreans inside (I think someone said that there were 156 of them in this building.)

 

 

 

 

 

 

 

 

 

 

 

 

 

We saw DeLoreans outside (everywhere we looked).

 

Some drove with their doors up, looking like they were ready to FLY!

 

We even saw one made out of BALLOONS!

 

Lucas loved reading some of the license plates, too, like this one from Maryland:

 

 

 

 

                                           Or this one from Illinois:

 

 

 

 

 

 

 

 

 

 

 

Or this one from Delaware:

 

But of course, the best DeLorean was the Back to the Future TIME MACHINE!!  See the Flux Capacitor “fluxing”?!

 

We found the Back to the Future DeLorean in a room with Stephen Clark from BTTF.com.  Many times over the years, Stephen and bttf.com have helped us find the perfect gift for an autistic child who loves “Back to the Future”.  (Check out the miniature “flux capacitors” these two are wearing!)

 

Lucas found the “Plutonium” that powers the flux capacitor (it looked remarkably like popcorn…)

 

 

 

 

And he was beside himself with joy when he discovered the Hover Board sitting in the Time Machine!

 

 

 

 

 

 

 

 

 

 

 

 

That joy exploded into the thrill of a lifetime when he actually got to SIT IN THE TIME MACHINE!!  The car’s incredibly nice owners (Terry and Oliver Holler of “time-car.com“,) offered Lucas and others the chance to make their dreams come true!

 

Time Circuits on:

 

Could it get any better than that?  YES, when Lucas got to meet some of the people from the movies!

 

Claudia Wells starred as Michael J. Fox’s girlfriend Jennifer in the original Back to the Future movie.   She was so nice, I think Lucas fell in love…

 

Bob Gale (Writer/Producer of the Back to the Future movies).  He had some good stories to tell about making the movies, too.

 

James Tolkan was in all three Back to the Future movies and in Top Gun, too.  (Lucas reminded him that he was also in “Fresh Prince”!)  This photo doesn’t begin to show how friendly he was (I snapped it at EXACTLY the wrong moment), but as there were others waiting to meet him, we didn’t attempt a second one. 

 

Jeffrey Weissman appeared in Back to the Future 2 and 3 as Michael J. Fox’s dad.  He’s a fun entertainer who also made great balloon sculptures.

 

Last but far from least in Lucas’ book was Andrew Probert, who helped design the Time Machine and created the story boards for the movies.  Lucas is holding an autographed illustration of the Time Machine by Mr. Probert.

 

All these folks took part in a Q & A session during dinner on the last night of the car show.  Lucas was in his glory as Andrew Probert gave a slide presentation of various Back to the Future moments, including some ideas that weren’t used in the movie, and the designing of the Time Machine.  I never thought Lucas would willingly sit through a 4 hour dinner!

 

We also used this car show to help Lucas learn to save his allowance money up, so he could buy souvenirs when he got there.  

WOW, it worked great!  Lucas saved every bit of his allowance for 3 months (in addition to his birthday money), enabling him to buy some great things to remind him of this birthday trip. 

 

But I have a feeling that even without the souvenirs, he’ll never forget that magical weekend that gave him the chance to live a dream…

 

 

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It’s raining again here in Delaware.  It rained buckets last Monday (May 12).  Our neighborhood creek was over the road by 10 a.m.

 

Since we couldn’t get across the road one way, we went the other way.  But as you can see, this creek was pretty high, too!

 

We don’t let Lucas ride the school bus, because we had too many problems with the driver.  She kept dropping him off and leaving before he got inside, for one thing.  That could have been a nightmare if no one was home, obviously. 

The really scary part was that when we finally had enough of her and tried to talk to our school district about it (the school teachers had serious concerns about her, too), we were told that there was nothing they could do, and the district supported the driver! 

But on this day, as I was leaving to go get Lucas from school, I saw a very scary site; I was so shocked, I didn’t even think to turn my windshield wipers on until after I took the first photo.  (If you look closely, you can see the headlights reflecting in the water she’s DRIVING THROUGH!!)

 

This is a bus for disabled students (I could tell by the size of it as it passed by), and here it is, driving THROUGH a flooded road!!  This road had “closed” signs up at both ends, and still this bus driver was stupid enough to drive through the flood.

She’s very lucky, and I’m very glad we drive Lucas to school…

On another note, it’s been crazy here as we worked on applying for guardianship for Lucas. 

We finally had the court award it last Friday, so it’s now official; we can care for our own child (duh).  I’ll explain all about that next!

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Dear Lucas,

I know you probably won’t ever read this.  But I still needed to write it, because today you turned eighteen, and that means that you’re a “man” now.

My, how far we’ve traveled since the day you were born!  You had such problems as an infant, I used to think that if we could just get you through that first year, we’d be okay.

Obviously, I was wrong!  I think that first year was just to toughen us up for life in the world of autism. 

I remember when they first evaluated you for school.  They told us that your happy demeanor meant that people would always want to work with you, and they were right.  Throughout your life, you have charmed teachers and others with that happy way about you.

You were so afraid of the world around you, a world filled with ugly noises, bright light and strange movement, none of which you understood. 

At school, when things got too overwhelming for you, you crawled into a box and hid from the world.  From the very beginning, you had to work harder than anyone I’ve ever known just to get through each day.

 And now, after 18 years, just look at you!  You’re able to make your way through most days without hurting yourself or others, because you usually understand what’s expected of you.

You share things with your Dad and I, from something funny you see on TV to what you did in Gym class at school.

You have a dog who you love and take care of, and who’s teaching you about empathy.

And while you’ll probably always have many things you need help with, you’ve come further than anyone ever dared to hope, and your Dad and I are proud to call you our son, and now our friend.

You are a delightful young man, and I’m so glad that God gave you to us. 

Now, as you go forward into adulthood, I know you’ll continue to surprise us with your abilities, amuse us with your perspective, and bless us with your child-like view of the world and everything in it.  For that, I thank you. 

In spite of the struggles we’ve been through, and the ones that lie ahead (the first being a guardianship hearing and applying for Social Security benefits), I just wanted you to know that I’m very proud of you.  You are my inspiration and one of my heroes.

Happy Birthday, Lucas!

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Lucas had his wisdom teeth removed this past Monday.  We’ve spent the week helping him cope with the pain, swelling, stiches, and other things that come with having wisdom teeth removed.

 This episode of Lucas’ life began back in February, when we first began dealing with the idea of autism and oral surgery.  

Poor Lucas was very nervous about having his wisdom teeth removed.  We tried to reassure him that most people have this surgery, and that while it might hurt for a little while afterwards, he got to eat ice cream and pudding all week.

A few days before the surgery, we took him to the hospital for his “pre-surgical” exam.

Everyone there was very nice.  After they examined him and took blood samples, they used a notebook with photographs showing what would happen to him on Monday morning. 

They showed him the mask they would use over his nose and mouth, and let him feel the tube that would be in his hand when he awoke (it was soft and flexible instead of “needle-like”).  They let him see the nightgown he would wear, and told  him that Mom and Dad would be at his side when he woke up. 

So far, so good.

THEN…they explained that when it was time to leave after the surgery, he would be taken down to the car in a wheelchair.  And Lucas freaked out.

It turned out that Lucas was terrified of the idea of riding in that wheelchair.  He attends a school for severely disabled children, and the only people he’s ever seen in wheelchairs never leave those chairs!

Poor Lucas thought that after the surgery, he wouldn’t be able to walk any more because they said he would ride in a wheelchair down to the car! 

Of course, once we understood his fear, we assured him that he wouldn’t need to use the wheelchair once he left the hospital.  The staff helped on the day of surgery, too, telling him very seriously that he could only use the wheelchair to go to the car, and then he was to send it right back to them.

The surgery went fine, and Lucas remembered to ask for the teeth so he could put them under his pillow.  He’s had pain and swelling, and been a little out of sorts this week.  He’s lived on pudding cups and ice cream, and by Thursday was eating egg noodles.  He’s rinsed with salt water and taken his antibiotics.  We figured out by Tuesday afternoon that when he put his head down, he was in pain and needed the pain medication his surgeon prescribed. 

His birthday is tomorrow, and he wants to try pizza for dinner tonight.  I hope he can eat it, because he deserves pizza after this week!

And yes, he left that wheelchair at the hospital!

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Lucas, Alan and I spent Saturday in Harrisburg, PA.  LucasWorks was invited by the Autism Society of Harrisburg to attend an Autism Walk/Run, and we had so much fun there last year we couldn’t wait to go back! 

We had to get up at 4 a.m., because it’s about a 3 hour drive to Harrisburg and we needed to be there around 8 o’clock to set up our table.  We got to City Island in Harrisburg by 8, and were ready for action when the first runners showed up at 9.

Lucas, of course, was starving by the time we got ourselves set up.  Luckily, they a bagel and coffee for him!

He perked right up once he ate that bagel.

About a thousand people came Saturday, some to run and some to walk.  There were dogs, including Lucas’ dog, Dixie, and plenty of kids. 

Dixie REALLY wanted some of Lucas’ bagel…of course she got some!

Having Dixie there gave Lucas a nice distraction if things became too busy at our table, or if he just needed to take a break.

Alan and Lucas would take Dixie on a walk around the beautiful park that is City Island, seeing the sights and stretching their legs.

I love telling people about LucasWorks, and about our Autism Awareness Bracelet and other products.  We’ve met some really wonderful people at these events, like this family who shared their own amazing story with us. 

It’s so great to get together with people who ALL understand what we’re up against.  Needless to say, we had a terrific time!

Lucas managed to stay awake (just barely) until it was time to pack up and head home.
 The day was well worth the effort, and I hope we can go again next year!

Now it’s time to focus on Lucas’ wisdom teeth removal next week.  In the words of Peter Pan, “that will be a Very Great Adventure.”  Stay tuned…

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WOW, have we been busy!!  The time has really flown by since Easter, and now here we are in April already.

Lucas was home for Easter vacation the last week in March.  He enjoyed sleeping past 6 a.m., and had a great time with his dog, Dixie.

Lucas really loves Dixie, and during the week he was home, Dixie started begging for food!

It’s possible of course, that Dixie learned this trick from her previous owners.  We did get her from the SPCA, and she was between one and two years old when we got her.  But she never did it at our house until Lucas was home for Easter vacation. 

Now, every time Lucas sits down, Dixie sits up and looks at him hopefully with her big, brown eyes.

The problem is, Lucas doesn’t know the difference between giving Dixie a little piece of tortilla chip, and giving her a little piece of spaghetti!  So we’re working on teaching him what’s okay to throw to his dog (dry, hard food), and what’s NOT okay to throw (moist, soft food LIKE SPAGHETTI!)

One step forward and one step back is a way of life with Lucas. But we’ll take it, because those steps forward are so wonderful!

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 For an autistic person like Lucas, Easter must seem very strange…

We get up early, get dressed and go to Church, where it’s WAYYYYY too crowded (with all those people who only attend on Easter and Christmas).  

Then we come home, and Lucas hunts for the candy that the Easter Bunny has left throughout the house.  Of course, he promptly eats most of the candy he’s found, bringing on that fabulous “sugar high”!

The rest of the day is spent pretty much doing nothing in a state of sugar coated boredom until dinnertime, when there’s a feast to take the place of candy!

 As you can see, Lucas thoroughly enjoyed his Easter basket, and had a nice day in spite of all that sugar.

Happy Easter to all!!

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Lucas has been watching the movie Titanic for about a week now.  He’ll watch the actual video, then watch sections of it on “You Tube”, then watch a documentary we have from A & E network.

 Yesterday, he announced to me that Jack (Jack Dawson, the lead character in Titanic) did NOT die.  We all remember how sad it was when Jack became one of the many Titanic passengers who died in the icy waters of the North Atlantic the night the ship sank.

Before I could decide whether to pursue an explanation about death, (going to heaven, everyone dies, etc.), Lucas went on to tell me that Jack “went into ice cube” and to Encino.

 If you’ve ever seen the movie “Encino Man”, it’s about two teenage boys who dig up a cave man in their backyard in Encino, CA.  When they find this cave man, he’s encased in ice, having been frozen there eons ago during the Ice Age.

Lucas worked out in his head that Jack Dawson went into very cold water and became encased in ice.  He worked out that if two guys from Encino could dig up a cave man in his ice cube, why couldn’t Jack Dawson’s ice cube end up in Encino, too? 

Once again, Lucas has proven to me beyond a doubt that he’s able to think about something in a sophisticated way.  Of course, his conclusion is completely wrong! 

But I can’t say it’s lacking in creativity. (And be honest, who among us DIDN’T want Jack Dawson to LIVE!!)

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