Tactile Tie-Dye Easter Egg Coloring

Browsing through Pinterest recently, I found several blogs explaining how to color Easter eggs with whipped topping. Some instructions said to use shaving cream, but don't. Just don't. Let's keep the ingredients edible for safety reasons, shall we? :) 

Rather than just plopping hard boiled eggs into colored water that he can't see, I thought this would be a much better way for Cody to dye Easter eggs. He may not be able to see the colors, but he can feel the hard boiled eggs and fluffy whipped topping. 

Should you decide to try out this method, here are the ingredients you'll need... 

as well as the instructions in seven easy steps...

Step 1- Hard boil your eggs. 

Step 2- After they have chilled for several hours, submerge the eggs in a bowl of vinegar and let them soak for at least 10 minutes.

Step 3- Pat the eggs dry with paper towels.

Step 4- Put a large spoonful of whipped topping into each muffin tin and add the gel food coloring.

Step 5- Swirl gently with toothpicks. Try to avoid overmixing. We don't want the eggs to be all one color. 

Step 6- Insert an egg into each tin and cover it completely with tie dyed whipped topping. Let eggs sit in the tins for about 10 minutes, for vibrant colored eggs. If you'd like your eggs more pastel, shorten the time. 

Step 7- Remove eggs and rinse in cold water. Let dry on a paper towel. Refrigerate until ready to hide or eat. 

Note to Cody's Doctor

The U of U now has a health care website where you can keep in contact with doctors, schedule appointments, check lab results, etc.  

Cody had an appointment with his neurologist last week and afterward I stayed awake for most of two nights, having a conflicting conversation in my own head (I do that sometimes and will freely admit it.) Last evening, I finally made a decision and took advantage of the website to write a note to Cody's doctor. Normally I wouldn't share something so personal, but I think this might be beneficial to other parents going through similar situations. 

Dr. _______,

After giving Cody a couple of doses of the Vimpat, as directed, I have come to the conclusion that I would rather not change his medication. My mind is telling me to listen to you because you are a professional, but my gut is telling me not to do this to Cody at this time. After nearly 33 years of caring for Cody, I have learned, albeit the hard way, to listen to my mother's intuition. I DO understand what you said about it being only a matter of time before Cody has another grand mal seizure, but I would rather take the chance and deal with it if it happens than medicate Cody to the point where he has no quality of life.

This is only part of the note, but it's an important part because I've preached about mother intuition on my blog before. Responsibility for another human being who cannot express their own needs is difficult at best. I'm trusting that I made the right decision. Only time will tell, but in the meantime, Cody won't be so drugged up that he's dizzy and sleeping his life away.

Real World Problem Solving

During math this morning, one little boy was having a particularly hard time following directions, so Mrs. B. asked him to sit next to me. When math time was over and the students were asked to put their worksheets away, I looked down to see him hurriedly adding this to his paper...

The worksheet (about 3D shapes) was meant to help students learn the difference between a cone and a cylinder, but this little boy observed more. In his "real world problem solving" he recognized a need for something that nobody else seemed to notice. I choked back tears as lyrics from the children's songbook from church came to my mind:

I'll Walk With You

Lyrics: Carol Lynn Pearson

Music: Reid N. Nibley

If you don't walk as most people do,

Some people walk away from you,

But I won't! I won't!

If you don't talk as most people do,

Some people talk and laugh at you,

But I won't! I won't!

I'll walk with you. I'll talk with you.

That's how I'll show my love for you.

Jesus walked away from none.

He gave his love to ev'ryone.

So I will! I will!

Jesus blessed all he could see,

Then turned and said, "Come, follow me."

And I will! I will!

I will! I will!

I'll walk with you. I'll talk with you.

That's how I'll show my love for you.

Meet Brent Johnson/ Adventurous Photographer Despite Only One Arm

A friend of mine posted some beautiful photos on her facebook page of Zion National Park and, upon following the link, I became acquainted with Brent Johnson Photography. It wasn't until I had looked through several albums that I realized Brent's missing an arm. Of course this intrigued me, so I asked Brent if I could do a blog post about him. After all, my blog is about dealing with disabilities and, from what I can see through pictures, this guy "deals" with a "disability" very well! 

Here are the questions I asked Brent, along with his answers. Prepare to be amazed. :)

Were you born without an arm or did you lose it later in life? I was born in Colorado Springs, Colorado, at Fort Carson Army Base. I was born without my left forearm. My arm did not develop from just below my elbow.  I still have full use of my elbow. I had to basically teach myself everything, because nobody knew how to teach me.

Did your parents/ family push you to do things or were they over-protective of you? My parents are the reason I am who I am today. They didn’t treat me any differently. They let me fail and make mistakes. They encouraged me, but didn’t do things for me. If I wanted to do anything, I had to figure it out myself.

How does driving a car work for you? When I was 14 years old, my dad began teaching me to drive. At 15, he told me if I wanted a driver’s license, I must learn to drive a stick shift first. I drove my first car, a 1959, 2 wheel drive Chevy pick-up, all through high school. I also drove a Yamaha TT600 Enduro motorcycle.

Was it harder to get a driver’s license having only one hand? When I got my license, it was an easy test. I drove around town, stopped for a soda, drove back to the DMV and told the employee I wanted a motorcycle license.  He said, “Can you ride a bike?” and laughed. Then he said, “Smile. Here’s your temporary. Your permit will be here in a couple of weeks.”

How do you handle shaking hands? I shake right hands. Most people do. I have never had to worry about that.

Have you ever dreamed that you had two hands? I have wondered what it would be like, but it’s never stopped me from doing anything, so I don’t worry about it.

How do you tie your shoes? The same way everyone else does, but it took me longer to learn. I was 9 years old, but I was so excited about it that I can still remember where it happened.

Have you always had a passion for photography?  I have always loved photography. My parents gave me a Canon T70 when I was in high school, but while I was working as a tour guide on the Colorado River, I took my camera on a trip and someone stole it.  I couldn’t afford to replace it, so I had to resort to point and shoot cameras, but I never let my passion go. I went to Montana to work with my friend, Greg Olmstead. He and his dad, Dave, were into photography and they would take me to Yellowstone National Park a lot. Dave had three different cameras and he would let me use one. They could see I loved taking pictures, so Greg and Dave bought me a Nikon camera with kit lens 18-55 mm, and a 55-300 mm lens for Christmas in 2011. The rest is history. My photography has exploded since then. Now I’m opening my own business. You can find me at...

 Brent Johnson Photography 

and  

Brent Johnson Artist Websites

In regards to your photography, did you have to adapt your equipment in any way or have you developed a technique that helps you?  I did not adapt my camera or equipment.  I use the camera lenses just like anyone else.  I have added an 85 mm for portraits and a sigma 150-500 mm for birding and wildlife, and am able to hand hold these without any trouble.

There’s a picture of you rowing a boat with gloves on. Can you explain how you do this? I love rafting and I wanted to row my own boat, just like everyone else.  I couldn’t hold an oar in my left arm, so I started experimenting. My first attempt was bolting a water ski glove to the oar. It worked great.  I could strap my arm in and pull/push just like everyone else. The only drawback was the glove would start wearing out and tear apart. Then I got an idea to use a strap. I took a yellow strap, cut it about 12 inches long and had it sewn together. I put a Velcro tab on both ends and one in the middle, then I took another piece of yellow strap, made a circle to fit my arm, and had it sewn to the top/middle of one end of the strap. I fastened the strap around the oar and took 3 hose clamps, one on each end and one in the middle, to secure it. This allows me to slide my arm in and out and row through the roughest of rapids, without worrying about losing my oar. It works just like a hand.  I have always had the mindset, “If there is a will, there is a way.” I just do things a little bit different than other people. That’s all.

What is one quality of yourself that you are proud of? I have a “to hell with everyone who looks at me as handicapped” attitude. I can do anything that anyone else can and I’ll probably do it better! My attitude started in 3rd grade, when I heard a coach trying to talk my parents out of letting me play basketball.  I later made the all-star team and played as starting point guard in high school. If there is something I want to do, I will figure out a way to do it. I’m not handicapped. Society puts that logo on individuals.  I tell people all the time, “The only handicap is your mind. If you think you can’t do it, you’re handicapping yourself."

Do you have a bucket list? If so, what are your top 3 things? I would love to go to Alaska and take pictures of wildlife there. That would be my ultimate dream! I want to visit Costa Rica and go fishing for Marlin and explore the tropics while taking pictures. I would like to go to the Daytona 500 in Daytona, Florida sometime. It’s nice to have dreams, but I can’t afford any of these things right now. It’s hard to get a good paying job missing an arm.

What is one thing about you that you wish everybody knew? I’m no different than anyone else. I’m not handicapped. I’m a normal human being and I don’t want to be treated any differently.

Thank you Brent, for allowing me and my readers to learn more about you. Not only are you talented, but your words, attitude, and photographs are encouraging and inspirational!

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

Winner vs Champion

"Winning takes skill. What Demetrius did took character."

My Opinion of Lars and the Real Girl

Katelyn brought Lars and the Real Girl over a few weeks ago and asked Don and I to watch it. We finally got a chance to put it in the DVD player on Labor Day and we loved the movie!

If you haven't seen Lars and the Real Girl, you should put it on your "to do" list. The movie is about a delusional guy named Lars who orders a life-size doll online and is convinced that it is his girlfriend. Lars' brother and sister-in-law, who are very concerned, are told by a medical professional that the best thing they can do for Lars is to go along with it. I won't tell you any more about the story other than the movie is PG-13 and nothing inappropriate is done with the doll.

If you have someone in your family or circle of friends with a disability, you should absolutely watch this movie. You'll laugh and laugh and maybe even cry at the end (I did.).

Ryan Gosling is not my most favorite actor, but he did such a good job with this character. Soooo...borrow or buy the movie, set aside 107 minutes, pop up some corn and enjoy watching Lars and the Real Girl.

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.

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).

How Do You Esteem Your Mother?

I decided to post the following video for three reasons:

1) Cody was born without eyes.

2) I am a mother.

3) A great deal of my readers are parents of special needs children.


After watching the clip, please leave a comment. I would appreciate hearing your thoughts.

A Special Kind of Friend

Back in August of 2010, I wrote a post about how Katie, an employee at Cody's day program, sent home this note...


To read the post in its entirety, click here.


Katie left the day program to teach English in Korea. Apparently she is back in the states, because I found these items in Cody's backpack this afternoon...

Isn't that the sweetest thing ever?!

Katie knows Cody well. He loves it!

Cody Learning to Play His New Air Guitar...

Christmas Day 2011

There's a Teeny Weeny Something that's so Small You Almost Can't See It

Wanna know what's fun? Running errands in the car, on black Friday, while listening to Cody sing this song, word for word. The only exception...Cody added "there's a teeny weeny something that's so small you almost can't see it" after flee on the wing.



Do any of you other moms want to run away with me? Barbados is sounding really good about now. :)

The Right Things to Say to Parents of Special Needs Kids

Mark and Bonnie's blog, The Fragile X Files, is one of my favorites. When I read their post, The RIGHT Things to Say to Parents of Special Needs Kids, I knew I had to share. I hope you will click on the link and take a minute to read it.

Baseball and Patriotism: Cody is 100% American!

This is a photo of Cody standing with his hand, or in his case hands, over his heart during the National Anthem at the beginning of the AL Championship Series between Texas and Detroit.

It doesn't matter where Cody is, if he hears the National Anthem playing, he's going to stand up, even if it is in his own living room. How patriotic is that?!

For some reason, Cody enjoys baseball and even though he can't see, he loves to play catch. It makes me wonder how athletic Cody might have been if he wasn't born with disabilities.

Anyway, about an hour into the game, the following conversation took place between Cody and his dad:

Don- Hey Cody! How about you let me watch Survivor on the DVR?

...long, long pause

Don- Are you going to answer me?

Cody- (In a voice with a hint of annoyance) I'm thinkin' about it!

Finally, at the top of the 4th inning, Don convinced Cody the game would still be going when Survivor was over, so he reluctantly agreed.

It was just as well because the rain came and delayed the game anyway.

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? 

The Dentist and Medically Fragile Children

Did I ever tell you about Cody's first experience at the dentist? On second thought, maybe I should reverse that. Did I ever tell you about the dentist's first experience with Cody?

Dr. Lax, an assistant professor of pediatric dentistry at Oregon Health and Science University, works with "medically fragile" children. Cody's first visit with Dr. Lax was memorable if nothing else. Cody was tactile defensive as a child and getting into his mouth was a chore for me, let alone a stranger. Don and I knew we would need to hold Cody's arms and hands down to prevent him from grabbing, shoving, hitting or pushing the doctor's hands away. What none of us saw coming, however, was Cody's right leg shooting straight up and kicking Dr. Lax in the head.

The good news is things only got better after that! (The only thing I can think of that might be worse than a blow to the head would be throw up.) Although Cody still isn't fond of people getting inside his mouth, he is able to make it through routine cleanings without his dad holding down his arms and legs. To read about Cody's coping techniques, click here .

The following information about toothbrushing and tactile defensive people was written by Jim Bubenik, a dentist who works with special needs patients in St. Louis, MO. I think those of you who have young children with special needs may find this of interest:

TOOTHBRUSHING FOR DISABLED PEOPLE

"All people with teeth need brushing. Brushing followed by flossing is better if possible. If your child will not let you near his mouth due to fear, unfamiliarity with the brush or tactile defensiveness around the face, here is how you systematically desensitize them: Start with just some wet gauze or a washcloth wrapped around your finger and move it around the lips until the child will accept this. Use a massaging motion. Put something sweet on it to give him extra incentive if needed. When he gets accustomed to this and seems to like it (this may take quite a few sessions), start to go inside the mouth. Back teeth seem to be less sensitive than the front ones on most tactile defensive people, so start on the back ones. Be patient. Don't worry if he clenches; you are making progress and he'll open later. When this has become routine, start putting the brush in the mouth to do the cleaning. If he doesn't like the bristles on the brush, just use the other end (the handle part) to desensitize him to the feel of that. Use a soft or ultrasoft bristle brush. Heat the bristles in hot water to soften them if needed, anything to get the child to take that first step. Stop if you are gagging him. Give him an old brush with something on it to make it taste good and let him play with it and chew on it by himself before or after the tooth brushing session. Expect that this systematic desensitization program will take several weeks but it is well worth the effort. Do it at the same time and in the same place every day. Give him/her a reward after the session is over.

Mechanical (electric or sonic) toothbrushes are all right only if your child will accept something like this in the mouth and they have learned to accept a regular brush first (NOTE: Children with seizure disorders should consult their physician before using any electric or sonic toothbrush as in some cases this may trigger seizures). Use toothpaste sooner or later in this series of steps but remember it is supposed to feel and taste good, so don't use anything that will turn your child off. The only real value of toothpaste is the fluoride in it. Use only a pea-sized drop of toothpaste. My all-time favorite flavor of toothpaste for kids is Oral-B Bubble Gum Flavor. Use water or fluoride rinse if they won't use toothpaste. Don't feel bad if your child never gets accustomed to toothpaste, it is not 100% essential. Most people with significant physical or mental disabilities need someone else to brush and floss their teeth for them. This may sound funny to you but I thoroughly recommend it after seeing many disabled people show dramatic improvement in dental health when a competent person takes over this part of their self-care."

You can find more information about Dentistry for the Disabled Child and Adult on www.our-kids.org .

Autism and Multiple Sclerosis/ Could There Be a Link?

I stumbled across the following article by Sara Lapinski and was completely taken aback. Because my husband has MS and we have a son with autism, I really want to do my part in getting this information out there.

There was no blogger icon, but I've included the link http://www.ageofautism.com . It's a rather lengthy post, but well worth the read.

Child with Autism and Mom with Multiple Sclerosis


Does your child have autism? Do you have MS? No one talks about it, but there seems to be a link, a link between parents of children with autism being diagnosed with MS. I can’t find anyone who is looking into this….why? Why can’t we find information about the link between the two anywhere?

Let me take a step back. For years now I have suffered from dizziness, headaches, vision issues, and other strange symptoms. I had my first MRI and yes there were small, possible spots of demyelination, but I was reassured this is common in most people walking around today. I was told many interesting things by doctors, but most settled on me having an anxiety disorder.

I was told, “You are dizzy because you have four kids”, “You can’t find your words because you have anxiety”, and better yet, “This is all between your ears, Sweetie”. So I talked myself into being very stressed out, and felt my dizziness was because I was anxious.

Years later, after not thinking about MS again, I received an official, unexpected diagnosis of optic neuritis. I knew right away what this meant, and headed back to the neurologist. I told him of my optic neuritis, commonly one of the first signs of MS, and I told him that I felt like I was occasionally slurring my words. He said, “Everyone slurs their words, I slur my words all the time. Look at you, you’re fine, your exam is fine, trust me, those old spots on your MRI could have been dust on the lens.” He agreed to do a second MRI, just to be safe.

About an hour after doing my second MRI, I am in the waiting room. The doctor comes out and signals me to come back. He says, “Well you do have MS, I can’t believe it, I really was not expecting this.”

Wait a minute…this sounds eerily similar to something I had heard years earlier, not at an appointment for me, but at an appointment for my son. You see, my son was not developing typically. We started early intervention at 10 months of age because my husband and I were noticing some subtle delays. As a first time mom, I just had the feeling something was wrong. At 12 months of age, I started questioning doctors about autism. My little guy just didn’t’ seem like the other kids his age. I had read some articles on red flag signs and, when I did, I felt so scared inside. It sounded just like my baby. The doctors and professionals reassured me “he is fine”. “He just has a little delay”. “He is a boy, you are a nervous first time mom, and you need to relax”. These are just a few of the many things I heard.

Every six months we went back and back. “He would not be looking you in the eyes if he had autism, he is so social, and he is so affectionate” the doctors told me. When my little guy was 3 ½, I took him back again. At this point his speech was completely repetitive and his behavior was spiraling downward. The doctor observed my son for 10 minutes before giving him a diagnosis of autism. I can still hear the doctors words vividly in my brain, “I don’t know how we missed this, I am so sorry.”

One might think I would be upset at the way I have been treated and doubted by doctors over the years, but I am not. Actually I feel fortunate. I received a diagnosis of MS in 2 years, the last I heard the average person waits 6 years for a diagnosis. Yes I was blown off by doctors about my son’s autism but, he did start in early intervention at 10 months and he has always had extreme amounts of therapy. He has worked so very hard, and I am so very grateful for where he is today. Could he possibly be farther along had he been qualified earlier for behavioral interventions? Possibly, but he did very well with the services we had.

What I am mad about is why now when I talk to so many families of children with autism do I find out that one of the parents has MS. Why when I tell my child’s specialist for autism that I have MS does he say to me, “I am so sorry, but unfortunately, it is not uncommon for children in my practice to have a parent with MS.” Why do the doctors who are “ahead of their time” feel that autism is an autoimmune disorder, just like MS? Why are doctors treating MS similarly, almost identically, the same way biomedical doctors are treating autism? Why isn’t the relationship of the two disabilities being tracked? Why can’t I find any research on the correlation between MS and Autism? Will one of them give us answers to the other? Can MS treatments help autism or vice versa? Should I have been warned that I might be at high risk for an autoimmune disorder after my son’s diagnosis? How can parents take care of a child with a disability if they themselves don’t feel good and have no idea what their future of their MS may hold?

Do parents in my situation need to be told in 10 years that there is a correlation between MS and Autism? Do we have to be told we don’t know what we are talking about, to find out later we were right?

I can’t help but think of Chris Martin from Coldplay’s words in his song Clocks, “Am I part of the cure, or am I part of the disease”. Please help parents in my situation be part of the cure.


Sarah Westerfield Lapinski