Happy Birthday Cody!

It's this dude's birthday today. This guy trusts like a child, loves unconditionally, and is doing his part to make saints out of sinners. He has proved doctors, psychologists  and educators wrong, beat the odds more times than I care to remember, and has touched the heart of each person that is lucky enough to know him, while at the same time, tested every fiber of their patience. Gosh, I love him! 

Happy 34th Birthday Cody!

Parenting the Blind- Fail

Cody and I had just sat down to dinner, a meal consisting of pork chops, mashed potatoes, gravy and steamed baby carrots, when Cody said to me, “Let us” to which I questioned, “Let us what?” My brain was thinking, “Let us pray? Holy shit. We forgot to say a prayer on the food? ” (I realize that blessing and cursing don’t usually go hand-in-hand.  I’m just being straightforward. I THOUGHT it. I didn’t voice it! J ) Cody simply replied, “Let us in my potatoes.”  That’s when it dawned on me that Cody was not suggesting we DO something, he was talking about the edible green leafy vegetable---lettuce!

I looked at the piles of potatoes on our plates and realized I hadn’t told Cody that I prepared them using soft skinned Butter Golds and did not peel the potatoes before boiling like I generally do. Apparently, the texture of the skins inside the mashed potatoes reminded Cody of lettuce.

Without delay, I explained the aforementioned to Cody, assuring him that there was not lettuce anywhere on his plate.  

“Weird” was all he had to say as he continued to enjoy his dinner.

It’s moments like this when I recognize how trusting Cody is and that I could do SO much better at describing things for him. 

Disability Etiquette Quiz

I took a Disability Etiquette Quiz and got 100%. That, in itself, is not surprising. I suppose I would have been alarmed had I missed a few questions after being around Cody and other people with disabilities for over 32 years.

I think it's a good idea for everyone to take the short quiz. It's informative and may come in handy down the road. In fact, I will GIVE you the answer to one of the questions, because it's something I often see people do incorrect. Here it is...

True or False: I should tell the person who I am before speaking to a person who is blind.

The answer is True and here is an example why.

When approaching Cody, whether it is extended family, friends, or acquaintances, so many find it entertaining to have him guess who they are. While they may be entertained by withholding their names, it's not fun for Cody. Imagine yourself blindfolded and attending a function where there is a large group of people (church, family reunion, etc.) and being expected to play "Guess Who?" over and over. I realize people mean well. They really do and I am very grateful when others want to approach Cody and visit with him, but I know that Cody is very grateful to individuals who state their name right away.

Disability Etiquette is something we should become familiar and comfortable with. If you wish, click on the link below to take the short quiz and come back to let us know how you did in the comment section. And it's OKAY if you do not get 100% the first go-round, because as we say in Kindergarten... "We're just learning!"   :)

Disability Etiquette Quiz

Blessings of Cody

The following was written by my daughter, Katelyn Lancaster Boulton, for one of her college writing courses:

BLESSINGS OF CODY

Raising a child with disabilities is not only a challenge but also a blessing.

The Lancaster family, from St. George, Utah, explained the joys of living with a disabled son, grandson, brother and friend. Each member of the family has been changed because of the awareness of disabilities they have been exposed to.

Cody Lancaster was born with CHARGE Syndrome. According to the CHARGE Syndrome Foundation, the condition refers to individuals which have multiple birth defects, including coloboma (an eye abnormality), choanal atresia (blockage of the nasal passage), unusual ears or other problems. While many cases of CHARGE have been linked to a mutation of the CHD7 gene, the syndrome is primarily a diagnosis based on physical features.

Brother Chase Lancaster explained the syndrome in simpler terms. “I don’t tell people he has CHARGE Syndrome,” he said. “I tell people he’s blind and autistic because people don’t know what CHARGE Syndrome is.”

 Cody does not have heart problems, nor is he deaf, but he was born with no eyes and because he has choanal atresia, doctors didn’t expect him to live for more than two days. He is now 31 years old.

Cody went to special education classes in public schools until he was 7.  “It was then that his dad and I had him evaluated at the Oregon School for the Blind in Salem, one hour north of Eugene,” mother DeeAnn Lancaster said. “After an extensive three week evaluation, we were so impressed with the school that we made the decision to have Cody schooled there. We would drive Cody approximately 60 miles to school on Mondays, then pick him up and bring him home on Fridays. He spent four nights a week at the dorms on campus and three nights a week at home.”

There were several dorms on campus, staffed with a number of employees. Each dorm had a leader, often referred to as a dorm mother. The school campus also had an infirmary staffed with nurses, a cafeteria, bowling alley, roller rink, track, playground and swimming pool. Cody loved his time spent at Oregon School for the Blind and has fond memories of his friends and the time he spent there.

Cody needed several surgeries as a baby. He has a shunt because he was born with hydrocephalus, which is water on the brain. A shunt provides a passage and allows fluid to move off the brain. Cody’s shunt moves fluid from his brain to his chest cavity, where it’s absorbed. He had a cleft lip when he was born that was repaired by a plastic surgeon. He had surgery three times to unblock his nasal passage. “Each time failed, so his dad and I decided against trying it again,” DeeAnn said. “Cody has lived his life not breathing through his nose. We think it is for this reason that Cody has never sneezed.”

When Cody was around 8 years old, he had his first seizure. “That was a scary time for us because he wouldn’t come out of it,” DeeAnn said. “We had to take him to the emergency room so they could inject a drug to make the seizing stop.”

Doctors decided Cody needed to be on a seizure medication, so they gave him Dilantin, a drug that remains in the body anywhere from weeks to months after it’s initially introduced. After about three weeks, Cody broke out in a rash and became really sick.  “It turned out he was allergic to the Dilantin, but he had three weeks’ worth of the drug in his system, so he was hospitalized until it wore off,” DeeAnn said. “We did not think he would live through the illness. He was that sick.”

DeeAnn said the shunt the neurologist placed in Cody’s skull miraculously lasted until he was around 14 years old. It was then that Cody became extremely ill and had to have a new shunt. He spent over three weeks in the hospital. Once again, doctors didn’t expect him to live. Because of staff infections and other problems, Cody had to have his shunt replaced two more times, for a total of three surgeries in a six month period.

Father Don Lancaster said watching Cody go through multiple surgeries is what influenced him to become an EMT. “You never know what’s going to happen,” he said. “You have to always be prepared.”

DeeAnn echoed her husband’s words, describing the moment when she knew Cody had to be assessed for autism. “After watching an episode about autism on ‘The Sally Jessy Raphael Show’…I decided Cody needed to be evaluated for autism,” DeeAnn said. “He had several of the characteristics that were discussed on the television program. He was able to be evaluated while at OSB and was diagnosed with moderate autism.”

Although Cody talks and doesn’t mind being touched—like most autistic people do—he hates having his routine changed, much like the movie ‘Rain Man,’ whose main character suffers from autism and has to do certain things at certain times and places. 

Cody too has a routine he follows. He goes bowling on Mondays, eats a Twinkie for lunch on Tuesdays, watches ‘Survivor’ and ‘Criminal Minds’ on Wednesdays, walks the track on Thursdays, watches a movie on Fridays, watches cartoons on Saturdays, and attends church on Sundays. Although autism has its disadvantages, it also makes Cody who he is. He can be quite a character.

Chase said if anyone is watching television or listening to the radio with Cody, they can’t change the channel or the music because it breaks Cody’s routine. Chase laughed as he talked about the number of times he has watched a show he didn’t want to or listened to unpleasant music in order to keep Cody happy.

DeeAnn said in the case that his routine must be changed, Cody has to know well in advance. “Heaven forbid Obama ever has to speak,” DeeAnn said with laughter, explaining that during breaking news events, such as presidential speeches, Cody throws a fit, not able to understand there are some things that just can’t be controlled.

Brother Casey Lancaster said having a disabled brother has been beneficial because you “learn to raise a kid basically.” Casey explained that Cody won’t use the bathroom without being told, and the family has learned to read Cody’s signals and needs from the non-verbal cues he gives. These cues could be anything from something simple, like Cody fidgeting in his seat, or something more complex, like Cody becoming sad or angry.

Sister-in-law Talitha Lancaster married into the family July 2012 and has adopted Cody as her brother. “I have learned in the period of time of getting to know Cody that he has his routine in things just like anyone else,” she said. “Now that I know Cody, I can’t even picture him not being around. I’m glad to have met him, and he’s a part of my family now.”

Cody has developed a close relationship with his father, and the two of them often joke with each other. Cody imitates his dad in every way, mostly by repeating things his dad says or the way he says them. His father, from South Carolina, has a strong accent, and Cody finds entertainment by pretending he’s also from the South.

Cody learned braille and mobility (how to walk with a cane) while at the school for the blind.

When the Lancaster family moved to Utah, Cody was once again placed in the public school special education program and involved in inclusion. Although he missed being with his friends and teachers at Oregon School for the Blind, he thrived being around “normal” peers. Some of his best friends were made through the peer tutor program at Pine View High School.  

Upon leaving the public education system, Cody started attending TURN Community Services, a program providing services for people with disabilities. Much like school or a job, Cody is at TURN weekdays from 8 a.m. to 2 p.m. The program provides an entertaining and educational environment for disabled individuals.

DeeAnn said the employees at the program have been exceptional. DeeAnn kept a note from a previous employee, Katie Johnson, who is no longer with TURN. Katie wrote: “It’s my last day today, and I wanted to do something special for Cody because he’s my absolute favorite client. There were a lot of days when Cody was my reason for coming to work, and I’m going to miss him a lot, so I made this mix CD for him to keep of songs that remind me of him or that he really likes.”

Cody loves listening to 95.9 The Hawk, 1980s music, watching home videos, eating Kit Kat candy bars and macaroni and cheese, watching the movie ‘I Now Pronounce You Chuck and Larry’, and playing Atari video games at his grandma’s house. Cody does not like ice cream, popsicles, lollipops, gum or cold fruit.

DeeAnn said Cody used to eat cold foods when he was young but after his first dental surgery, his teeth became sensitive.

Cody has not only influenced his family, but he also has influenced everyone who has ever known him.

Cody is a miracle before anyone’s eyes. He has used his disability as a way to make others aware of the importance of life—and the greater meaning therein.

Brother Casey Lancaster said: “It wouldn’t be a life without Cody in it. He’s always been there. I wouldn’t know what it’s like without him.”

Grandmother Marilyn Crawford-Bauer also explained. “He makes us think about what’s important in life and what’s special,” she said. “Things could be so much worse.”

Left to Right- Chase, Talitha, Asher, Casey, Matthew, Katelyn, DeeAnn, Walker, Don ,Cody

Photograph by M. Felt Photography

Protecting People with Disabilities

My son with disabilities came home from his day program yesterday with this on his backside...

This is the top of his left leg, right under his buttocks.

He was taken to a park and put in a swing for about 15 minutes (so I've been told) in 100 degree weather.

Reports are being filed, action is being taken and changes will be made.

I'm posting this in hope that mothers, fathers, nannies and caregivers will see how dangerous it can be to take children to a playground when temperatures are soaring.



Sometimes being Cody's mom sucks everything out of me. Taking care of someone with disabilities is hard enough without having to deal with this kind of shit crap.

Chit-Chatting with Cody

Keep in mind that Cody is autistic as well as blind while you read these brief, yet humorous dialogues that recently took place in our home:

Don, Cody and I were sitting at the table eating lunch and engaging in casual conversation. After a minute or two of silence, Cody spoke up and asked, “Whatcha giving me dirty looks for dad?”

After Christmas, Don packed up our rocking musical reindeer along with the other decorations and Cody wasn’t a bit happy about it. He told his dad, “You’re a Jack.” (Because he refuses to swear, that’s Cody’s way of saying Jack Ass.) Then, in the same breath, Cody said, “I’m talking to you precious dad.”

Katelyn, Matt, Cody, Don and I were sitting in the living room one evening when Cody unexpectedly shot out of the recliner and said “Hey Guys?! (pause) I can’t see!”

A Very Special Twelve Days of Christmas

A few years ago, a very kindhearted person did The Twelve Days of Christmas for Cody. That individual (or individuals) will probably never know how happy their actions made my son. It only took a couple of nights for Cody to get into the swing of answering the door and finding packages left specifically for him. Each evening until Christmas, Cody greatly anticipated the sound of the doorbell. To this day, I have no idea who Cody's secret angel was, but I do know from the gifts and poems left each night, Cody's giver knew him rather well. 

Regrettably, I did not save every message/ gift that was left during those memorable twelve days, but I did keep half of them. They were...

Day 5- Five Christmas Stories
Day 6- Six Symbols of the Lord (all I kept was the Legend of the Candy Cane)
Day 8- Eight Candy Bars
Day 9- Nine Chocolate Chip Muffins
Day 10- The Ten Commandments
Day 11- A Bar of Ivory Soap

This is funny, however, I used to threaten my kids with dish soap or pepper. ;)

And this note was left for Cody on the last day...

If only I could speak with this anonymous person(s), I would thank them for remembering my son during that holiday season. Considering whom our Savior spent His time with during His mortal ministry, I would say Cody's friend was undoubtedly following Christ's example.

(See Matthew Chapter 9).

Raising Angels

The similarities between this girl's story and mine are amazing. Please watch the short video. (You may want to grab a tissue.)

"Some people come into our lives, leave footprints on

our hearts and we are never the same."      Flavia Weedn

Daylight Savings and Autism Do Not Mesh

There is no way in hell that whoever came up with Daylight Savings Time had a kid with autism. No way! 

Cody got a Talking Atomic Watch for Christmas and Don and I have been trying to set it ahead an hour without success. Don even broke out the instruction pamphlet and read it and everybody on this planet knows men would rather not have to read (or ask for) directions.

Do you realize what Cody's talking watch being incorrect means to those around him? It means that we have listened to Cody grunch and worry since early Sunday morning. (And yes, grunch is a word at our house.)

If we do not get the correct time on his watch by the end of the evening, I am going to take a hammer to it, order Cody a new one and have him keep popping Prilosec for his ulcer until it comes in the mail.




Now you all know how I feel about Daylight Savings Time...and Talking Atomic Watches.

Road Trippin' Part One

Feeling a bit stir crazy over the week-end, Don, Cody and I took off in our 2012 Nissan Altima (see this post)...

and did a little sight seeing. Well, that's not exactly true. Don and I went sight seeing. Cody went sight listening (an oxymoron of sorts).

Cody is a great traveller, as long as the radio is tuned into a classic rock station and we don't make him get out of the car.

We went to Zion National Park. If you have never been there, you must put it on your bucket list. Zion National Park is in southern Utah, approximately 85 miles from the north rim of the Grand Canyon, 157 miles from Las Vegas and 115 miles from Lake Powell.

The weather was warm and beautiful (high 80's) and, with the exception of Cody grumbling when we made him get out of the car, it was an enjoyable drive.

Below are a few of the pictures we snapped...


Check out the heart shaped cloud, captured completely by accident.

Zion has two tunnels. This is the entrance to the small tunnel.

Inside the small tunnel.

Inside this rock mountain is a 1.1 mile long tunnel.
You can see one of the windows about mid photo.

Here is a zoomed in shot of the window.

This is the entrance to the mile long tunnel. It was Cody's favorite part of the trip. He insisted on riding with his window down so he could hear the echo.

After we left the park, we drove to a ghost town of sorts, but you're going to have to wait and read about that in Road Trippin' Part Two. :)

If you want to know more about Zion National Park, click here. If you would like to see gorgeous, breathtaking photos of the park, do a google image search. You won't be disappointed.

"Chase, Look!"






















This is what happens when Cody helps Chase
with his laundry.

Cody, his Overprotective Drama Queen Sister and the Duck Pond

My daughter came home from college this afternoon anxious to engage in the following conversation:

Katelyn- "I just saw Cody at the duck pond. He was standing all alone."

Me- "I am sure there were people watching him." (He was with his day program.)

Katelyn- "There was a group huddled over by the bench. NOWHERE NEAR CODY."

Short pause

Katelyn- "He's blind! Don't they know he could wander off into the sea?"

This is the point where I start laughing. In her exaggerated drama, the pond suddenly became the sea.

Katelyn- "What was he wearing?"

Me- "Jeans and a blue Aeropostale shirt with white lettering."

Katelyn-  "Well, for one thing, he should be in shorts. You shouldn't dress him in jeans yet. It's hot. He's probably sweating bullets with the sun beating on his head." (It might be 80 degrees, at the most.)

Me- still laughing

pause

Katelyn- "Nobody even offered him a seat."



Do you suppose she is a little protective of her older brother?

And the really funny part is, when Cody came home and I asked him about the duck pond, he said, "We didn't go to the duck pond. We went bowling."

Poor Katelyn. She worried herself sick over nothing. :)

Don't Take Advantage of My Child Because He is Blind

Cody walked into the house this afternoon, after being at his day program all day, and said, "I only had a sandwich and chips." Knowing full well what he was talking about, I unzipped his lunch box to see if the OREOS I packed for him this morning were still there. I saw nothing 
but an empty water bottle and his ice pack, so I said "Cody, what happened to the OREOS I packed for you?" and in the saddest voice, he told me, "Scott ate them." (Scott is another client at the day program.)

At this point, I was livid. Cody asks me to pack OREOS every day, but because I want him to eat as much of a variety as his autism allows, I only put OREOS in his lunch box one or two times a week. I know he really looks forward to eating them.

It makes no difference to me if the person stealing Cody's food has disabilities or not. Maybe is should, but it doesn't. It's not right to take advantage of Cody just because he can't see. The thing is, I know this was not the first time this particular client has taken food off of Cody's plate. What I wonder is where are the workers when this stuff is going on and how many other people are taking Cody's food because he can't see to defend himself? 

Grass Fight!

Unless he is in a swimming pool or wearing his "bee hat", Cody is miserable when he is outdoors. He is also a tad bit tactily defensive. That is what makes the following photos so great. Late last night, Don lured Cody outside with fireworks and they ended up in a one sided grass fight. Believe it or not, Cody was the instigator.

Here Cody is grabbing a handful of grass,

trying to throw the grass in Don's face,

then putting it all over his own shirt.

I caught Cody trying to sneak a handful of grass into the house.

Pay Attention to Me!

For some reason, Cody takes pleasure in doing things to deliberately provoke people. It's his way of shifting attention back to himself.

Don, Cody and I were running errands a few days ago, when Cody began clearing his throat excessively in the back seat of the car. (This is something Don often does after he eats and Cody enjoys bugging his dad about it.) Don and I intentionally ignored Cody. After awhile, Cody finally said, "Are you ignoring me because I'm making fun of you dad?"

Keep in mind that Cody is blind as well as autistic as I tell you another thing he did this last week. The four of us were eating dinner when Katelyn mouthed something to me and then pointed downward. As I looked under the table, trying to understand what she was saying to me, this is what I observed...

Cody often will kick people under the table. This time he wasn't kicking Katelyn, just resting his foot on top of hers, trying to get a rise out of his sister. She didn't give him the satisfaction of saying anything and he eventually gave up and moved his foot.

Egg Hunt for Visually Impaired Children

When we lived in Oregon years ago, Pacific Northwest Bell use to organize and provide special beeping egg hunts like the one in this video. Cody loved to participate.

Ah...the good old days. I kind of miss them.

On the Sly

It has always been difficult to get Cody to read braille at home. Being autistic as well as blind, Cody thinks reading is something he should do only at school. He also hates reading aloud. If I ask him to read to me, he'll speak at a snail's pace, mumble, or chop up sentences so badly that I want to pull my eyelashes out one by one.

Yesterday, I stumbled across a journal that Cody kept when he was younger. Realizing how much he enjoys reminiscing, I nonchalantly plopped it in his lap and said, "Hey Cody. I found your journal. If you want to read it to yourself, you can. It has fun stories about living in Oregon and going to OSB." I then left him alone, knowing if I made a big production out of it, he'd never examine the book.

Later in the evening, Katelyn and I were sitting on the sofa enjoying Winter Wipeout, when I glanced over at Cody and witnessed this...

We then watched as Cody read five or six pages, with a big grin on his face, before he closed up the book and put it on the floor. Incredible.

de·vi·ous- showing a skillful use of underhanded tactics to achieve goals. (Yep. That's me!)

Dining in the Dark

Patrick Neil Harris was on Ellen today and they were talking about restaurants. Katelyn was watching with me...well, Katelyn was watching, I wasn't really paying attention until she got excited about something Ellen said. Here is the conversation that followed...

Katelyn- They have these restaurants where everything is dark. I want to go to one. The waitress seats you and you can't see a thing! It would be so fun.

Me- Eew. You wouldn't know what your eating. There could be hair or a fly in your food and you'd never know. They could serve you weird stuff like fish legs or something.

pause...

Me- Oh. Wait a minute. Fish don't have legs.

(This is where we crack up.)

I was thinking of fish eggs and frog legs, but that's not what came out of my mouth.

Then Katelyn said, "Mom. You should try to find a clip of a dark restaurant on YouTube", so we started looking.  Katelyn spotted something and said, "click on that one". I read what she wanted me to look at and said, "No. This can't be the one. This one says blind people serve your food." Katelyn replied. "Ya. That's the whole point!"

She neglected to tell me that important piece of information. Now it all makes sense!



Kind of cool, huh?!

The New Year Shuffle

Each December we have to rearrange our living room in order to put up the Christmas tree. We don't move furniture around very often due to the fact that Cody is blind and it really throws him off. He did fine with the changes this year but instead of telling us he wanted the furniture moved back, he said "On New Year's Day, we have to turn the house around."

I realize the picture is about the upside down housing market, but Cody's statement is kinda fitting to the cartoon. Don't you think?

Happy New Year Everyone!

"We've Got Eleven Games Coming Up."

Cody loves spending time at his grandma's house. He really likes playing with her Atari. (Remember my blog post 'Toys From Christmases Past'?) Anyway, Cody likes to chant, in order, the games that he will play on the Atari when he gets to grandma's house. Apparently he started doing this in the year 2001. It took us about seven years to figure out that he was adding a new game each year. Now that I look back, it seems like we were a bunch of dimwits for not catching on sooner, especially after seeing it in writing...

2001- Yars Revenge
2002- Yars Revenge and Kangaroo
2003- Yars Revenge, Kangaroo, and Pac Man
2004- Yars Revenge, Kangaroo, Pac Man, and Pit Fall
2005- Yars Revenge, Kangaroo, Pac Man, Pit Fall, and Grand Prix
2006- Yars Revenge, Kangaroo, Pac Man, Pit Fall, Grand Prix, and Donkey Kong
2007- Yars Revenge, Kangaroo, Pac Man, Pit Fall, Grand Prix, Donkey Kong, and Centipede
2008- Yars Revenge, Kangaroo, Pac Man, Pit Fall, Grand Prix, Donkey Kong, Centipede, and Asteroids
2009- Yars Revenge, Kangaroo, Pac Man, Pit Fall, Grand Prix, Donkey Kong, Centipede, Asteroids, and Stampede
2010- Yars Revenge, Kangaroo, Pac Man, Pit Fall, Grand Prix, Donkey Kong, Centipede, Asteroids, Stampede, and Q-Bert

Now Cody's talking about 2011 and has added a new game. He says, "We've got eleven games coming up!" then he continues with...

"Yars Revenge, Kangaroo, Pac Man, Pit Fall, Grand Prix, Donkey Kong, Centipede, Asteroids, Stampede, Q-Bert, and Circus Atari."