World of Autism

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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The need for consistancy is very important for Lucas due to his autism.   So where does this need go when it comes to putting his stuff where it belongs??? 

 For the first time ever though, Lucas is having company of his own.  Another boy in his class is coming over after school today, so I told Lucas that he had to help clean the house since it was HIS company.  And it WORKED!! 

He put his trains and other stuff away where it belongs:

Dusted the furniture:

And even used the vacumm cleaner, in spite of the noise it makes:

His dog Dixie was very curious about this noisy machine, but Lucas told her, “It’s okay, Dixe” so she wouldn’t be scared.

I told him he did such a nice job, we might do it every week (that will help make it part of his “can’t live without doing it” routine.)

We only worked in two rooms (living room and sun room), but I think Lucas is pleased with how nice they look.  I can’t wait to see how he and his friend enjoy their afternoon together!

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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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