World of Autism

I was going through our photos, and came across this one of Lucas with his dad.

Because he got into EVERYTHING, Alan took to putting Lucas on his shoulders whenever we went anywhere.

We used this technique when we went shopping, to family events or did just about anything that required us to take Lucas.   It kept him from running away (or into traffic!).

When Lucas got too big to carry this way, things became much more difficult, since he still didn’t know how to communicate, or  to recognize danger.

As a matter of fact, the last time we attended my family’s annual family picnic, Lucas was seven years old, and too big to be carried this way.  He ran right across the horse shoe pit, coming within about 2 inches of a getting killed by a heavy, iron horse shoe someone had just thrown.  That’s why it was the LAST time we attended…

Tags: Daily life by Lauren
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Well, this has been a really busy year for us (the reason I haven’t updated in so long!)

Since I last checked in, we’ve had several life changing experiences happen to us; always a challenge in the world of autism…

1.  My husband left his job of many years (he was offered a good early retirement option, and took it rather than taking the chance of being laid off later!) 

2.  We decided to leave Delaware. We moved there for the Delaware Autism Program, but over the years we watched the program degrade more and more, and in his final classroom there, Lucas was actually LOSING skills (see previous articles in this blog).  It was time to help him begin a new life ‘after school’.

3.  We prepared our Delaware home and sold it, then moved to the great state of South Dakota.  In addition to wonderful people and unbelievable scenery, South Dakota is also a great place to run a business.  Now that Lucas is finished with school, we can really focus on helping him to become even more involved in his job at LucasWorks. 

4.  Only a few short months after our move to South Dakota, I had to return to Virginia, as my mother was dying of cancer. 

Lucas’ grandmother died on Halloween (a whole new experience for Lucas, made that much worse because of his association of Grammy’s death with the Halloween specters of ghosts, goblins and cemeteries.)

So there you go, the short version of 2010:

• A job change for my husband,
•  A major move,
• Lucas leaving school,
• The death of my mom. 

Any one of these is a major event, but taken all together in one year, I say “Good riddance, 2010; don’t let the door hit you on the way out!” 

I hope everyone else’s year was a little calmer than ours was, and look forward to getting back to sharing life in the world of autism in 2011.  I plan to get back to regular updates in the next week or two.

Tags: Daily life by Lauren
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Lucas was watching “Jurassic Park” today.

During the part where they were lifting a cow through the air to drop it into the Velociraptor cage (kind of in a sling, at the end of a crane), he said, “Look Mom, cow is Buffalo wings…”

I think maybe he was making a joke!  A “flying” cow = Buffalo WINGS, get it?!

On another note, we heard from a woman namde Bobbi who has a website for banjo players called Windy Strings .  She works with my husband, has another friend who has an autism website, and got us together via an e-mail.

Bobbi also kindly placed a link to LucasWorks on her site, and thanks to her, we’ve discovered a new website called Autism Hangout .

So thank you, Bobbi, for your kindness!  It’s things like this that make the world a better place for all of us!

Tags: Daily life by Lauren
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Geez, how is it possible that it’s already the middle of January! 

Christmas and New Year’s went by WAYYY too fast, and the start of a new year is always a busy time for our LucasWorks business.  We’ve also been trying to get Lucas’ IEP done since November, which I’ll talk about soon (I promise!)

But Lucas showed some GREAT imagination, and I just had to stop everything to share it! 

He calls me into the living room, where his dog Dixie is sitting on his lap, just as happy as can be:

So I go in and ask, “What’s up, Lucas?”  Lucas responds with, “Look Mom, Angry Dog!”

Can you see how Lucas is pressing Dixie’s forehead down, to make wrinkles?  HE MADE HIS DOGGY FROWN!!!

This is GREAT (and also hilarious!) 

I’ll NEVER believe ANYONE who tries to tell me that my son cannot learn, or is too old to make progress!  Anyone who’s got the imagination to figure out how to make a dog look angry is definitely still capable of learning, so THERE (picture me sticking my tongue out here.)

Okay, it’s back to work for me.  I’ll write about his IEP this coming weekend (I need to wait until the trauma begins to fade…)

Tags: Daily life by Lauren
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Lucas decided to make his own coffee on Sunday morning!  Luckily, Alan was awake, and unbeknownest to Lucas, was watching from another room.

Here’s Alan’s account:

It took Lucas about 15 minutes to put the water and coffee in.

First, he looked all over the coffee maker for how to add the water.  He finally discovered the little door on top.

What he DIDN’T discover was the gauge on the side of the coffee maker, to help determine how much water to put in.

He’d add a little water and look into the well, add a little more water and look into the well, add a little more water and look into the well, until he thought there was enough water (it took him about 7 minutes just to add the water!)

It took anoher couple of minutes to figure out how to open the coffee basket.  There’s a large blue button on the coffee maker’s top which seems obvious, unless you’re autistic.

Luckily, there was already a coffee filter in the basket, to which he added about 4 LARGE scoops of coffee…

While the coffee was brewing, Lucas searched for the creamer and sugar.  Can you see them in the photo, directly above the coffee maker?  Lucas couldn’t, so he got sugar from the sugar canister.

 Since he DOES know that coffee gets “2 sugars”, he used the giant sugar scoop in the sugar canister to add 2 scoops to his coffee cup.

So all that was missing was the coffee mate.

That’s about when I got up and came into the kitchen.  I asked Lucas what he was doing, and he said “Make the coffee”, and then tried to explain that he couldn’t find the coffee mate.

It took a little work to figure out what Lucas wanted, because he had no idea what to call the coffee mate.  He finally said, “Where’s the other coffee, spoon?”

Since he had the coffee and the sugar, we decided he must be looking for the creamer.  When I pointed it out above the coffee pot, he got it down and added two sppons full to his coffee.

Let’s face it, that coffee couldn’t be drinkable!  So I rushed to make some “normal” coffee as Lucas took his first sip of the very dark (even after the coffee mate), syrupy stuff in his cup.

I asked, “How is it?”  Lucas swallowed with a slight grimace, and responded, “Good.”

I asked if I could have a sip, and holy moly, that coffee would have made a Starbucks espresso seem weak!

God love him, he actually drank that entire cup of coffee!  Of course, since Lucas is hyperactive to begin with, it had the opposite effect on him, and he took a nap that afternoon…

Then he almost burned the house down by lighting the stove in an attempt to help “make pizza”.

I suspect that all this ‘cooking’ is the direct result of the efforts in his classroom to each Lucas and the other kids to be more independent.

Unfortunately, the school seems to have FORGOTTEN THAT SAFETY NEEDS TO BE TAUGHT FIRST!!!

A stove can catch fire, especially when a kid turns a burner on high and then put a cardboard pizza box on it.

A blender can take off fingers, especially when a kid loves movies like “The Goonies”, in which the bad guys threaten to put a kid’s hand into the blender to get info from him.

A kitchen can be burned down, especially when a kid watches old “Fresh Prince of Bel Air” episodes of Will Smith burning down the kitchen, and everyone laughs every time the kid watches it.

Needless to say, Tuesday I went to the classroom, to explain (again) in person that Lucas is NOT to be taught to use any kitchen appliances.  For HIM, it’s a really bad idea. 

We WILL, however work hard with him at home, teaching him how to make a decent cup of coffee…

Tags: Daily life by Lauren
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I said I’d write about gym class and Special Olympics.  But we’ve had a ‘lunch crisis’ compounded by other stuff, and if I don’t write about it now I won’t get to it (life is moving REALLY quickly these days!)

A little background - Lucas’ regular teacher is out for 2 weeks on medical leave, and in her absence I’m having trouble getting any info from his classroom.

E-mail replaces “Home-School book” - The supremely effective “home-school” book that’s been used successfully to communicate between home and school all these years isn’t used at his new classroom, as his teacher prefers to rely on e-mail instead.

Except - When his teacher’s out, e-mail doesn’t work very well at all…

Lunch Problem #1, Milk - Lucas brings his lunch from home 4 days a week (healthier and cheaper), buying a carton of milk to go with it in the cafeteria.  He buys lunch once a week; usually pizza, and usually on Fridays.  He’s done this all 16 years he’s been in school.

Lucas discovered on his first day in his new classroom that he can’t buy milk to drink with his lunch, and came home quite agitated about it.  His teacher said the cafeteria at the college where his classroom is located doesn’t sell milk by itself, only as part of a meal.(?)

Okay, so we decided to buy a small bottle of milk at Walmart, and send it in for Lucas’ use at lunch.  After all, they have a small kitchen in the classroom, so no problem, right?

Last Monday, we sent the milk in, and even sent in a cup.  On Wednesday, Lucas brought the cup home, telling us in his convoluted way that the cup was “stinky”.  I’ll say!  It stank of old milk!  So much for THAT idea.

Then…

No Lunch - Last week, Lucas planned to buy his “pizza lunch” on Thursday, because the students had no school Friday (teacher in-service).  He really looks forward to that pizza lunch, and even reminded me that morning, saying ”Mom, pizza money”.

So imagine my utter shock when I got a phone call from a teacher, telling me that Lucas had gotten no lunch at all that day!!

According to this teacher, the class had been “told all week” that they would have a “baked potato bar” on Thursday, as part of a cooking activity.  When Lucas took a bite of the baked potato, he gagged, and they were afraid to let him eat any more for fear he’d throw up.

I explained that Lucas doesn’t eat potatoes (something about the texture), but since I didn’t know about the cooking activity, I couldn’t tell them he doesn’t eat potatoes.

I also explained that I’d really like some sort of communication about what’s going on at school, so that if something like this comes up again, I can give them a “heads up”.  The teacher suggested I just send in a list of the foods that Lucas doesn’t eat…

Back to the milk - While I had the teacher on the phone, I asked about the dirty milk cup (I had sent an e-mail about it, but hadn’t received a response).  The teacher explained that since the students leave for work immediately after lunch, there’s no time to work on “cup washing” skills then.

See?  There’s usually a logical explanation for things, but if there’s no communication between home and school, how would we know what’s going on?

I told this teacher that I would see if Lucas could buy milk at the elementary school he changes buses at each morning, and she had an interesting response…

She said that every day someone has to go to that school to pick up lunches for students on the “free lunch” program.  She said she’d see if that person could just pick up a carton of milk for Lucas when they picked up the daily lunches.  She’d let me know. 

That was last Thursday.

Still no word on milk - I e-mailed the teacher this morning, asking about the milk for Lucas’ lunch today.  I explained that if they couldn’t pick it up for him, to let me know and I’d drop some off at the classroom before lunch.

I didn’t hear a word from the teacher until 4:30 this afternoon.  Of course, LONG before that, Lucas arrived for work, with additional issues from school…

Self Injury - Lucas got off the bus with large scratches across his forehead, the sign of a really frustrated Lucas.  Let’s see that forehead again:

Pencil instead of pen - The aide on the bus told me that he was upset because they had made him use a pencil instead of a pen in his planner.  I explained that he hasn’t used a pencil for years, preferring a pen for all writing.

The reasoning is that it’s easier to erase something in his new planner book than to scribble it out and write next to it.  Okay, but again, if I had known, I could have helped prepare him for that change from pen to pencil.

A “Brat”? - Once Lucas got into his work routine, I asked him why he scratched himself.  He said, “Teacher said, ‘Brat, no pen!’”

Ironically - There was NO mention of Lucas being called a “brat” in the e-mail I received from the teacher this afternoon, nor was there any mention of him scratching himself (maybe he did it on the bus, and the school staff member on the bus didn’t notice it?)

However, the teacher DID tell me that they “rely on the students to inform their parents about what is happening.”

Here’s the thing - At least 6 of those students are part of the Delaware Autism Program, and one reason they’re not in a normal classroom is BECAUSE THEY CAN’T COMMUNICATE VERY WELL (picture me banging my head against a wall here), among other things.

Now granted, this teacher, who has known Lucas for 14 whole days now, also said that she was “under the impression that from talking to Lucas, he was capable of telling people what things were important to him…”

But wouldn’t it make sense to read the speech evaluation that was just done to see how well Lucas communicates?  (FYI, his language skills scored between 3 and 7 years old.  Good enough to rely on him to be the sole source of communication between home and school?  I DON’T THINK SO!)

Tomorrow, Lucas will be working at home all day.  This may continue until the following occur:

• His regular autism teacher is back from leave.
• Daily communication is established and ensured between home and school.
• He receives milk every day with his lunch.
• I know EXACTLY what’s going on in the classroom for the ‘next day’, so that Lucas gets some actual benefit from his education.

 Or it may continue all year; I’ll let you know.

P. S.  But the good news is that he DID get milk today! 

Tags: Daily life by Lauren
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I don’t know where the time goes; here it is September again!

Lucas has begun the school year with several changes, including a new classroom with some new kids, at a new location (a local college).  He also has a new daily schedule and a new bus route.

That’s a LOT of new things for ANY kid to absorb!

In addition to the above changes, we’ve also had to address some ‘issues’ already this year, so I thought I’d share how we met some of these challenges.  I’ll need to spend a few days sharing this, so bear with me and check back!

The meeting - In response to an e-mail I sent Lucas’ teacher about some of the new things this year, the school scheduled a meeting between my husband and I, Lucas’ teacher, the school principal and the school district’s head of special education.  I also invited Lucas’ caseworker from the DE Division of Developmental Disabilities, who had expressed an interest in keeping up with his education. 

What we took - When my husband Alan and I met with the school regarding these issues, we took the following things with us:

• Lucas’ IEP.
• Copies of the appropriate sections of the law (IDEA and Delaware state special education law).
• A tape recorder, so that we had a complete record of what was said.

Issue #1, the bus - Instead of riding a special ed bus this with an aide on it (like he’s done every year he’s attended school), this year the school wanted Lucas to ride public transportation!

This is done to all the kids in this classroom, in the interests of “fostering independence”.  Granted, it would be a “Paratransit” bus.  In Delaware, that means it picks up and drops off “door to door”.

But there would be strangers on the bus, and there would be no aide of any kind to help Lucas.  Among other issues (like “stranger danger” and who would assist him if there’s an accident), sometimes something as simple as a person making noises he doesn’t like can send Lucas through the roof. 

While we all want to think nothing would ever happen to our kids, it’s THE CHILD and THE FAMILY who get to deal with the aftermath of something going wrong! 

Of course, with Lucas being 19 and an adult in the eyes of the law, who knows what would happen if there was any trouble on the bus, and he reacted badly to it! (Head banging, screaming, arrest, handcuffs, jail, worse??!!)

Solution - We asked to see the data showing that the school had educated Lucas about “Stranger Danger”, and had trained him to behave appropriately and react correctly if there was an accident, etc.

Our asking to see that data reminded the school that they had neither prepared him to ride public transportation, nor did they have any proof that he was capable of riding it successfully.  (I suspect it may have also reminded them that if anything happened to my kid on that bus, the district would be held accountable.)

Lucas will be riding a school bus this year, with an aide.  He’s allowed to ride public transportation only with a school staff member in attendance. 

Don’t get me wrong, I know there are kids in his classroom who are more than able to safely ride public transportation.  But Lucas, who still tends to walk into the street without looking both ways, may NEVER be able to successfully navigate it without an aide. 

Next up, the issue of NO GYM CLASS OR SPECIAL OLYMPICS.

Tags: Daily life by Lauren
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I came across the following article this morning.  A grandfather shot his wife who had been diagnosed with Parkinson’s disease, and his 12 year old autistic grandson, and then turned the gun on himself. 

It’s so sad on so many levels.  My prayers are with them and their families. 

 Man Kills Wife, Grandson, Himself on Wedding Anniversary

Monday, July 27, 2009, Associated Press

ATLANTA —  George Doby had been married to his wife 57 years on the day authorities say he shot and killed her and their 12-year-old grandson before killing himself.

Two of the couple’s children and four of their grandchildren had come to George and Edna Doby’s house south of Atlanta on Sunday afternoon to celebrate their anniversary, according to a police report released Monday.

“This was an all-American family,” said East Point police Capt. Russell Popham. “The family’s still struggling to understand why he did it and obviously we’ll never know now.”

He said the Dobys were a close-knit family that often got together for Sunday dinner. Family members told police that George Doby did not appear upset or agitated Sunday before the shooting.

The couple’s daughter, Jane Laughridge, told authorities she was in the kitchen making dinner with her daughter Sunday afternoon and could see her parents standing next to each other in the backyard.

Laughridge said she looked away and then several gunshots rang out. When she looked back, her parents and nephew were lying in the yard, according to the report.

Laughridge’s brother, Alan Doby, said he was in the basement with two of his children when he heard the shots. He said he raced up the stairs and into the backyard where his parents and 12-year-old son lay, all shot in the chest. George Doby, the family patriarch, had a Colt .45-caliber revolver in his hand, police said.

Authorities said Alan Doby shouted to his sister to call 911 and started performing CPR on his son. A neighbor, Glenn Bowman, also heard the shots and called police, authorities said.

East Point Police on Monday were still searching for a motive in the killings. Efforts to reach members of the Doby family were unsuccessful. A man who answered the phone at a Doby residence declined comment.

Bowman told The Atlanta Journal-Constitution that George Doby, 87, had failing eyesight. His wife, Moiselle “Edna” Doby, 82, had been diagnosed with Parkinson’s Disease.

Edna Doby and her grandson — who was autistic — were shot multiple times. George Doby had a single, self-inflicted wound.

Tags: Daily life by Lauren
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One thing about people with autism, they don’t play the ‘politically correct’ game.  They see things as they see them, and sometimes that can be REALLY confusing!

This summer, Lucas has a classmate who is quite high functioning.  During the regular school year, this young man spends a large part of the school day in a regular ed classroom, where he’s been known to correct the science teacher on all matters pertaining to dinosaurs…

Last Friday, the teacher asked this student what he thought about Michael Jackson dying. 

In a voice of utter frustration, he immediately blurted out,

“Which Michael Jackson died, the black boy or the white man?!” 

How do you begin to explain?  Should you even try?

Maybe there is no way to explain; maybe we can only try to consider that people with autism see things more clearly than we do sometimes. 

Tags: Daily life by Lauren
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WOW, it’s been crazy around here!

We were really busy in April for Autism Awareness Month; we attended an autism walk in both PA and in DE, and enjoyed filling lots of orders at LucasWorks.

Of course, the rest of life was busy, too.  I had Lucas help plant some seeds for a garden, thinking that if he helped to grow some vegetables, maybe he’d enjoy eating them.

First, he put the dirt in:

Then he shook some tomato seeds into his hand: 

He carefully put a couple of seeds into each little pot: 

Last, Lucas added water to the newly planted tomato and pepper seeds: 

It’s been Lucas’ job to keep the seeds watered, and he’s enjoyed watching them grow.  We’d been looking forward to planting them in the garden the first week of May…

Until our septic system had to be replaced.  Which meant that all but two of our beautiful trees had to be removed in the back yard.  

 So of course it rained for 10 days straight.  And Lucas and I got to run around to the various county offices getting the required well, septic and property stuff.  Here in Delaware, these offices don’t even share the same computer systems, let alone the same office locations! 

Once the rains stopped, the trees came out.  Then the fun began.

So while Lucas has certainly enjoyed watching the chain saws, tree climbers and Tonka toys working, our plan to put the garden in around Mother’s Day didn’t quite work out, since half the yard was being ‘reconstructed’!

Of course, while all this was going on, life merrily marched forward.  We still had Lucas’ school, Alan’s and my work, and the daily grind, all balanced with running around pulling permits, constant phone calls from tree people, septic people and county people, and of course, keeping Dixie the dog under control during the parade of strangers through the yard!

They’re finished now, and we’re getting back on track.  The garden should go in this weekend.  I’ll let you know…

Tags: Daily life by Lauren
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