World of Autism

Today I’m thankful for two things, my family and the kindness of others:

For my family.  My husband Alan is the greatest, doing whatever he can to help out.  Like Atticus Finch, Alan is a man of honor who always tries to do the right thing, whether at home or at work.

I miss my oldest son, Robert, who is living on his own now, far away.  Robert has a huge heart (which gets him hurt sometimes), and a quick wit that can make me burst out laughing. Once he finds his way in life I have no doubt he, too, will be a man of honor, honesty and integrity, following in his dad’s and grandfathers’ footsteps.  I’m proud to know him, and thankful to be his mom.

I’m thankful for my autistic son, Lucas, without whom I wouldn’t have met the most amazing people in the world over the years.  Lucas teaches me far more than I could ever teach him, about patience, about what’s really important in life, and about rejoicing in the little things.

For the kindness of people like Lori Simpson.  LucasWorks was invited to sell our products at a large event in Virginia.  I forgot my calculator and Lori was kind enough to lend me hers for the day.  I’m thankful to Lori and everyone like her who offers help to others, be they friends or strangers.  They make living in the world of autism so much nicer.

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Thanksgiving is just 9 days away, so it’s time to focus on giving thanks for all we have.  I thought I’d share “what I’m thankful for” every day for the next week.  Then by next Wednesday, I’ll be full of happy, grateful thoughts, and ready to truly give thanks at our Thanksgiving dinner table.

I’m thankful for:  Teachers!

For Lucas’ teachers, Miss Paula, Miss Cammie and Mrs. Howard, along with his Speech Pathologist Miss Tammy, and his Vocational teacher, Miss Bonnie. 

There’s no question that without the above waarriors against autism (and all his previous ones), with their patience, dedication and sense of humor, Lucas would be forever caught without even a voice in the world of autism.

For my teacher, Cricket Walker at GNC Web Creations.  Cricket offers comprehensive classes FREE OF CHARGE on everything from Website Marketing to Seach Engine Optimization to learning HTML and CSS coding.  It’s pretty safe to say that without her, our LucasWorks site would be non-existant!

In addition to running her business, raising her family, and having a REALLY bad year, Cricket takes the time to answer questions and offer help when someone gets stuck on a lesson.

THANK YOU to all y’all for giving to others; you make more of a difference than you will ever know, and you surely have a straight shot into Heaven.

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Well, we had to set the clocks back last night.  That means our whole weekend revolved around making sure that Lucas would be ready to get up and go to school on time this morning.

You know, we thought we’d have trouble with Lucas adjusting to the time change; we usually do.

Guess what?  Lucas was fine!  IT WAS THE CAT WHO WOKE THE REST OF US UP AN HOUR EARLY, crying for FOOD!

We plan and God laughs, sigh…

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The TV show “Criminal Minds” just started, and the opening is about a child who goes missing at the local mall.

The very first thing that security asks the parents for is a recent photograph and description of the child.

THIS is exactly why I try so hard to convince parents to carry ID for their children!  It’s just not enough to keep ID on the child, or to keep ID with YOU.  Parents need to do both, and to do ALL!!

No one ever wants to think that it will happen to their child.  I used to be like that, until autism happened to my child!  That did it; it proved that the unthinkable CAN happen, with no warning.

This is why LucasWorks carries a Child ID Kit selection for every kind of child.  There are also many other companies online that have various types of ID products.  The important thing is to GET IT and PUT IT WHERE YOU, POLICE, FIRE AND RESCUE WILL FIND IT.

My husband, our son Robert, Lucas himself, his grandparents and I ALL carry a Child ID card with Lucas’ info (including his photo, fingerprint, medical info and an emergency treatment authorization on them).  We have an ID card in each car, Velcro’d into the door of the glove box.

That way, no matter:

Where we are,
Who Lucas is with,
Which car we take,
What state we’re in (geographically or mentally),

and no matter what happens:

Car accident,
Terrorist attack,
Hurricane,
Lucas runs off, gets lost or worse,

we know we can get his information to the people who need it right away.  Lucas also wears an ID tag on his belt loop at all times.

I urge you to think about all the places your child may be, and all the people they might be with.  Then consider if each of those situations has the information they would need to help your child if any of the above happened.

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We attended an Autism Walk last Saturday in Manassas, VA.  It was a very nice day, with perfect weather for a walk.  Lucas, his dad and I were at this walk, not to walk but as vendors, selling our Safety, ID, Independent Living and Autism Awareness products.

We spent the night at Grammy and Grampa’s house in Virginia, and then were up, dressed in our LucasWorks Autism Awareness t-shirts, and out the door by 7:30.  We arrived at the Walk location around 8:15.  Lucas and Alan unloaded the van while I found us the perfect table.

Lucas has gone with us to some of these walks, and he usually has a pretty good time.  He’s beginning to grasp that this is part of “work”, and that he’ll get paid for doing his job for the day.  Of course, his job is explained in great detail, and usually consists of:

1. Wearing an Autism Awareness shirt, and modeling it when asked to (standing up, opening his jacket and being still so someone can read the shirt.)
2. Helping bring our supplies in at the beginning of the event, and helping take them back to the car afterwards.
3. Not whining, complaining or making noises.
4. Helping dad get food and/or drink for Mom while she’s too busy to get any!

This is a LOT for Lucas to keep track of in a strange environment full of noise and people, but he does pretty well, now that he’s gone to a few of them.

Of course, sometimes Lucas just needs to MOVE!  He can’t sit there all day waiting to do something.  So Alan spends a good portion of these events keeping an eye on when Lucas needs to get up and move around.   He’ll take Lucas out to walk around and look at things, or go browse the other vendor tables, helping Lucas to say “Hey” to diffferent people he sees.

Lucas did really well at the Autism Walk, and got paid for his good job.  I think he really likes that part of working for LucasWorks!

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Living in the world of autism means that the Special Olympics of Delaware is a regular part of life for Lucas and us.  Each year at school, time is devoted to learning, practicing and enjoying different sports, all to prepare for a special Olympics event.

The Soccer Skills competition was this week.  There was a nice opening ceremony, with a classmate of Lucas’ helping to sing the National Anthem, a torch ceremony with our local police departments, and a bunch of speeches (because everyone wants to get in on the act!)

Even though I know this child of mine better than anyone, he can still surprise me with things he’s learned.  His job in this event was to “dribble” the ball with his feet around various cones, then to kick the ball between the goal posts.

As you can see, he knew to take little steps, and did quite well, in spite of those big ol’ feet!

Lucas didn’t win the gold, Silver or even the Bronze, but he sure did have a great time.  He helped to cheer other students on (with a litle encouragement from me), did his best when his turn came, and surprised me again by showing his skills on a soccer field.

Later this year, he’ll participate in bowling, basketball and his favorite, roller skating.  What a great way for him to learn sports, get some excercise, practice sportsmanship AND social skills (cheering, taking turns, waiting patiently, working together, etc.)

I can’t wait!

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Lucas’ big brother Robert was home for a visit this weekend.  Robert is 2 years older than Lucas, and is living in Pittsburgh, PA right now.

Lucas misses his big brother, sometimes A LOT!  (The house was so lonely when Robert left that we ended up getting a dog for lucas!)

Robert is the only friend Lucas has ever had, and that probably won’t ever change.  Having autism means you have trouble communicating, AND are clueless about all social situations, so having friends is difficult, if not impossible.

But to Robert, Lucas is just Lucas.  He’s the same brother Robert’s always known and loved, so Robert treats him just like other brothers treat their siblings; with a total lack of respect, a lot of love, and an eye towards both annoying the heck out of him while watching out for him, all at the same time.

I think the siblings of disabled people sometimes don’t realize just how special they are.  Because they’re closer in age to their brother or sister, they can sometimes get through where a teacher, a doctor or a parent can’t.

Robert is the one who taught Lucas how to brush his teeth correctly and how to drink from a cup without a lid. 

We used to need 5 adults to hold Lucas down for a shot or blood work.  One day, Robert needed a shot, too.  He told Lucas to watch.  Lucas watched; the nurse gave Robert his shot, and Robert responded with an, “Ow, that hurt.”  Then he looked at Lucas and said, “THAT’S what you say when you get a shot.  Now let’s do yours.”

Sure enough, the “team of five” stood by, and we watched as Lucas, with Robert by his side, sat on the exam table.  We watched that nurse insert the needle and draw his blood without him making a sound or moving.  Then, as the nurse withdrew the needle, he said, “Ow, that hurts.”  Just like his big brother showed him to do!

When Lucas was transferred to the autism classroom at our local high school, Robert was the one who took ME to buy “cool” clothes for Lucas, explaining that  just because Lucas was autistic, he didn’t need to wear dorky, childish clothes that would make him stand out even more!  I had honestly never thought about that, but now I do, especially when I see other disabled kids at school wearing “uncool” clothes!

I hope Robert knows how special he is, both to us and to his little brother.  Lucas doesn’t show his emotions much, but he really loves his brother, and I think his life is better than we could have ever hoped for, in large part because of Robert.

From teaching him silly “Thriller” moves to helping him learn, Robert is and will always be the most important person in Lucas’ life.

“He ain’t heavy, he’s my brother.”

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Lucas is working at LucasWorks in the mornings, as part of his Vocational Training program through school.  After all, the whole reason we started this company was to ensure that he would have a place to work when he gets out of school!

He works here from 9:00 until 10:30, Monday through Thursday.  It’s a little different from when he worked here last year.  Then he had a teacher here with him to reinforce behavior, etc.  Now it’s just me here with him, and he’s been able to maintain his “school behavior”, which is great.

So this week, I decided to have him inventory all of the Autism Awareness Bracelet supplies that we use to make our bracelets.  I know he can count, so I figured this would be a good excercise.

I showed him how to take each charm or bead in our supplies, and count them out into piles of ten each.  Then I gave him a calculator, which he learned to use at school, to add the piles of 10 together.

Imagine my surprise when he counted by tens out loud, to come up with his totals!  He had a little trouble with one item, because it took him above 200 in his count. But he went slowly and after only 2 tries, got that charm counted correctly.

I would never have known Lucas could count by tens if I hadn’t asked him to take inventory.  It makes me wonder what other skills he’s mastered that we haven’t discovered yet!

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Lucas went back to school last week.  There are some new children in his class this year, and one of them is a kid that Lucas has a real problem with.

Lucas’ teachers are very concerned about this.  The child actually joined the class at the beginning of summer session, and the teachers observed Lucas “shutting down”, spending more and more time with his head on his desk, just to avoid the other boy.

They’re worried about Lucas losing ground over this, as am I.  He’s come so far, further than we ever dared to hope, and we don’t want this situation to stop him!

The ironic part is that there are now enough kids in the class (8) that, by our Delaware State Code, it’s supposed to be separated into two classes, which would put this other child away from Lucas altogether.  I guess we’ll have to see if they add another teacher, and pray.  A lot.

In the meantime, Lucas is beginning his day working with me at LucasWorks.  He’ll work from 9 until 10:30, then I’ll take him to school in time for lunch.  This limits his exposure to the other child, in addition to beginning a seque into his “after school” life of working.

Too many of these children must be so traumatized when school ends and they don’t understand why they can’t go anymore.  We reasoned that this way, Lucas can begin to adjust to spending less and less time at school, and more and more time getting paid to work (which means money for movies, the mall, etc!)

We’ll see how it goes…

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Well, it’s our last day in the Hills, and we don’t want to leave!  Lucas comes ALIVE when he’s away from home.  We’re convinced it’s because he’s free of the television, vcr and computer.  But of course, we need to get back to civilization, which includes all those things.

We said goodbye to our friends Dallas and Mary Deitrich, and Lucas bid farewell to Rattlesnake Jake.  I promised myself that I would focus my “Parenting an Autistic Child” article for September on their amazing Meeting The Need endeavor.

 We left the hills on the 22 of August, driving across South Dakota through the day.  We camped just south of Sioux Falls that evening.  We had been around Sioux Falls before, but had never explored it (it was just another place we went past on our way to our Black Hills!)

I had read that the city was named after the waterfall that the town was built up around.  So after dinner, we decided to drive into town and see the actual “Sioux Falls”.   As usual, the people of South Dakota were more than happy to give us directions, and at dusk we beagn to travel through the city in search of “Falls Park”.

When we got the Falls Park, it was full dark.  But the park was alive with people!  Families were riding bikes along the lighted paths and couples young and old were out strolling, enjoying the balmy summer air.

A nice lady who worked at the park told us about a show they were having later; the history of Sioux Falls was told with laser animation on the side of a building next to the falls.  This “history lesson” was accompanied by an ever-changing light show on the falls themselves, and was narrated over loud speakers.

Lucas LOVED the show!  This was the Wild West, and the story was rife with fist fights, saloons, ladies of ill repute and even kids with pea shooters!  The whole show was done with an eye towards entertaining folks of all ages, using actual letters and news clippings from those times.  I wish whoever put this together would do the same for school history curriculums!

This will be our last night in South Dakota.  We’ll be home in a few short days now, stopping on our way to see Lucas’ big brother Robert.  My birthday is in 2 days, and I hope we’re in Pitstburgh, where Robert is now living, in time to have my birthday dinner with him.

I think Alan and I are both a little sad to be heading back to the East, with its crime, traffic, litter and problems.  But for now it’s home, and we know it’s where we need to be for Lucas.  So we’ll continue to head east, towards televisions, vcr’s, school and work, and keep our dreams of living in the Hills close by, just in case…

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