Developmental Disability News

Magic Trick Based on Social Cues Fools People with Autism
Yahoo! News

In photos: In movement, autistic boy finds joy
Times Union

Rapid Rise in Medicaid Expenditures for Autism Spectrum Disorder Treatment
Science Daily

It's Time... To End Insurance Discrimination Against People With Autism
Huffington Post

Workers with Asperger Syndrome or autism can fill workplace needs
Kansas City Star

The Prematurity Puzzle
Newsweek

Dad's Diary: There's no Running from the Truth

his weekend I swung by one of our favorite bakeries and picked up a box of a dozen donuts. There are only four of us in our household and My Keiki doesn’t really like donuts so a box pretty much lasts all weekend.

As I stood at the kitchen counter Sunday afternoon, picking at stale apple fritter straight from the box, I felt a little tap in my back. I turned around and My Keiki was standing there looking up me curiously. In his hands were my running shoes and one athletic sock he had picked up from the living room.

Of course, this could mean a lot of things. And because My Keiki doesn’t say much, it’s pretty much up to me to figure it out.

While I’d like to think it was an invitation to go outside together, I can’t rule out a more subtle possibility. Perhaps My Keiki thought I needed some “lifestyle encouragement,” and was of the opinion that I should eat a few less donuts and do a little more running. If so, I have to admit he’s probably right.

Developmental Disability News

An Autism Fund-Raiser That’s Built on Laughter
New York Times
Story also at: USA Today

Autism and Cooking: A Sensory Experience
ABC News

Utah lawmakers explore Medicaid waiver for children with autism
Deseret News (Utah)

Center salutes disabled workers and their employers
Salt Lake Tribune (Utah)

Dad's Diary: My Keiki gets a Man Cave

t My Keiki’s IEP meeting a few weeks ago, I share my thoughts on overstimulation with his support team. My son really struggles when other kids cry continually or when the class engages in a high-energy activity that involves motion or moving toys. I suggested that they find a place where he can decompress away from the other kids, returning back to the group when he feels ready.

At first, I wasn’t sure if my idea was constructive. However when one of the team members excitedly pronounced, “He needs a man cave.” I could tell that the she understood what I was trying to describe.

As we discussed what would work in the classroom setting, my mind started to create a little hideout where My Keiki could decompress. I shared my design concept with the team and they were all supportive.

Hiring one of my parents’ neighbors, we came up with the following concept based on a similar play house I played in growing up.

Basically, the tent structure slips over a folding table with the table legs sliding into little pouches to increase stability. I love that we can wash it if needed and the teachers can even use the top surface for other storage purposes. That we are adding to the learning environment as opposed to filling up precious classroom space is a nice “bonus.”

We liked the idea so much that we even made one for home (why sew one tent when you can make two?). If in the end, he quits using it, I’m sure the sister would be thrilled to take it over.

Developmental Disability News

BYU student researching effect of autism on empathy
By Heidi Toth, Provo Daily Herald


From the Article:

"There are still more questions than answers when dealing with autism and related disorders. BYU student Oliver Johnston is hoping to answer at least one of the questions. It's not exactly groundbreaking, he said, but even if it's not the answer to where autism comes from, it may help people to understand those with the developmental disability a little bit better."

Developmental Disability News

Denver Post television critic Joanne Ostrow has reviewed an upcoming HBO documentary entitled “Monica & David.” The documentary highlights the lives of two people with Down syndrome in the weeks leading up to their marriage and during the subsequent year.

Dad's Diary: The KidMover 3000

hen our second child was born my wife quickly felt outnumbered when I wasn’t around. She was adamant that we secure a Graco Duoglider stroller insisting it was her portal to freedom, allowing her to go anywhere with both kids in tow.

She was right. For over four years, we’ve used the stroller several times a week taking the kids to the zoo, parks, the state fair and countless trips to shopping centers, eateries and community functions. We’ve even used it “off-road” a few times, though I don’t think that is encouraged in the manufacturer’s recommendations.

The stroller always felt a little big, but it worked perfectly for our kids that were steadily increasing in size. But much like that favorite shirt from high school, I woke up one morning and accepted that the stroller just didn’t fit anymore.

Most kids graduate from a stroller around what, age four? Well My Keiki will turn eight in a few months. It was time for a change.

I’ve actually found a stroller that would be perfect for My Keiki made by a company that specializes in adaptive strollers. Plus, I’m totally drawn to the idea of a device that we could go running with. My Keiki would love it. But if you look up the price, you’ll understand why I’m hesitant to get the ultimate “baby – no make that adolescent – pusher.”

Enter the KidMover 3000. I decided to take the phrase “adaptive stroller” literally modifying the Graco Duoglider to meet our needs.

First I removed the netting that hung on the underside. My Keiki had long since torn a hole in the fabric allowing him to rub his toes on the front wheel which was kind of gross on certain paths that are also frequented by dogs, horses, geese, etc.

Second, I solved the toe problem by cutting a board that slides nicely into the stroller’s framework, creating a new footboard. No more toe to wheel contact.

Finally, and with apologies to The Sister, I tore out the front cushion giving My Keiki tons of leg room. At first the support bar for the front cushion looked a little out of place, but now I just tell My Keiki he’s going on an amusement park ride and fold it back across his lap like a safety restraint. “Please keep your arms and legs inside the stroller at all times…”

So there you go – our adapted stroller. I’ve still got my eye on the Axiom, but for now, I’m pleased I’ve been able to create a solution that will last at least another year.

Dad's Diary: Bedroom Swing

his weekend I installed a swing in our bedroom. I’m not entirely certain how common this is since I’ve only seen something like it once before. But that was in 50 Cent’s house on MTV Cribs and our swing looks quite a bit different than his did.

The thing is, My Keiki really likes to swing. He also really hates winter which means for the past few months, my wife and I have been looking for ways to adapt to the approaching, looming, ominous months of despair (December – February).

Instillation was not easy. The hardware the playground people sold my wife wasn’t really usable and I spent quite some time in the attic getting a feel for the strongest points of contact and best installation options. Ultimately, I’m confident the hooks I drilled into the ceiling aren’t going anywhere.

Though it’s a bit unconventional – installing playground equipment in the master suite – it works for us (really, not much of our lifestyle is genuinely “conventional” anymore at this point). We considered many different places for the install but our room had the best combination of ceiling height, swinging arc and anchors for the chains. Plus it doesn’t look as out of place as it may seem. I hear playground chains are all the rage in home décor these days.

Though we’ve only found time for My Keiki to use it twice, he likes it. In fact, when he woke up this morning the first word he said was his own little version of “swing.” I think that makes it all worth it.

Dad's Diary: ER Nightmare

few nights ago, we heard My Keiki crying in his room a little after 11 p.m. We went in to see what was troubling him and found him covered in blood. He had hit his face on something, perhaps his bed footboard and had cut his lip deeply. It was clear he would need stitches.

We went to the emergency room at an area hospital anticipating he would need to be sedated in order to be treated. We’ve tried to prepare My Keiki for medical visits. We’ve “practiced” and done everything that the experts suggest, but he has a very significant aversion to medical facilities.

As we approached the door, I could see that the emergency room looked packed. I tried to help My Keiki calm down by walking around outside for about 30 minutes but he would not stop crying.

We needed to get in and get out so I decided to just go in the ER lobby and let him scream. I know that’s awful for everyone else, but seriously, my kid was the only bloody person in the whole ER so I feel justified in forcing the issue a little.

The nurses were arrogant and disinterested in our recommendations which resulted in a failed IV attempt that caused My Keiki’s skin to poke up off his arm. I’ll never forget how My Keiki looked at me as I restrained his legs and arm with all the force I could gather. I’m certain I’ve lost his trust.

He eventually got four stitches under sedation, but once he awoke he screamed some more until we finally left. The whole experience was a nightmare and reminded me of just how phenomenal the care is we have received at Primary Children’s Medical Center over the years. (Clarification: This story did NOT take place at the Primary Children's Medical Center emergency room. It took place at a hospital ER closer to home. This experience at a different emergency room reminds me of how lucky we are to have PCMC less than an hour away for surgeries, specialty care, etc.)

We finally got home at 3 a.m. Door-to-door, it was four hours.

Dad's Diary: We've invented a new game

arlier this week My Keiki, the Sister and I invented a new game. The rules are simple. My Keiki and the Sister get on the trampoline with three inflatable playground balls. Their goal is to throw them all of while I, the opponent, stay on the ground and try to keep the balls on. If all three balls are off the trampoline at the same time they win. It is not possible for me to win.

The kids think this game is hilarious. I think it’s fun because I get to throw things at my kids. Plus, I get a little exercise running around trying to make my two hands keep up with their four.

I’ve found I have to multitask at home, but I also have to be creative about it. I’d like to exercise more, but the prospect of finding time to go to a gym is so preposterous it makes me laugh. In the end, I’d rather be with my kids anyway. Plus, I don’t think the people at the gym would let me throw things at them the way my kids do.

The Teachings of Jon

According to my wife, we’ve had access to the film, “The Teachings of Jon” for quite some time. However, I saw it for the first time just a few days ago. The film didn’t change my advocacy philosophy as much as it simply resonated with me, articulating and validating much of how I feel about inclusion and societal expectation related to people with developmental disabilities.

The film, shot documentary style, tells the story of a couple that welcomed their son Jon, who has Down syndrome, back into their family at an early age.  He had spent the proceeding years in the care of another individual, but when the caretaker passed away, the family picked Jon up, drove him home and began their life together.

There is much in common between my son and Jon. Both have dramatically limited speech skills and they both share an affinity, or perhaps compulsion, for ritual and obsessive behaviors. Yet, both have loving hearts, an unassuming disposition and an acute ability to sense the emotions of others and respond compassionately.

I was especially impressed with Jon’s parents and their ability to “say it like it is,” without coming across as fatalistic, self-indulgent or victimized. Rather, they’re honest and realistic, and their perspective has the potential to redefine how society embraces people like My Keiki and Jon.

Read the following from Jon’s parents on the film’s website:

We learned early on that it took a lot of struggle and effort to try to make Jon be just like us. So rather than trying to change Jon and make him fit into our idea of what we think is important, we focussed on how to grow and adapt to Jon.

A perfect example is with Jon's wardrobe. Jon is most comfortable in his t-shirt and underwear. For years, we tried to make Jon wear pants all day. It took a lot of effort and we had to tell him over and over again "No Jon, you have to keep your pants on". He didn't understand why. We finally realized that is was more important to us for him to be comfortable in his own home, than for him to dress the way we wanted him to. So we adapted. Now he understands that when he goes to work, or out in public that he has to wear his pants, and when he comes home he can wear whatever he wants to wear.

We try our best to teach our son social norms. However, sometimes our words just don’t resonate. Sometimes, my son won’t keep his pants on.

So often, I read about the importance of helping people with developmental disabilities overcome behaviors that are a barrier to socialization. But sometimes the behavior isn’t the barrier. Rather, it’s how the rest of us respond to it.

News: National Ability Center

Salt Lake City's Deseret News has an interesting feature article on the National Ability Center in Park City, Utah. The center provides kids with physical disabilities a unique opportunity to experience adventure in the outdoors.

WAHL Deluxe Color Pro

As we started getting ready for back to school last week, it seemed like a good opportunity to cut My Keiki’s hair. Ever since his first trim, haircuts have always been my job. That’s mainly because I can’t imagine My Keiki sitting still in a salon long enough to actually get the job done.  For years, I just used scissors from the “pencil drawer” and they worked fine enough. My Keiki’s hair texture is very forgiving and honestly, after years of watching others cut my hair, it really just came naturally for me.

Several weeks ago, I came across a hair cutting kit at our local warehouse outlet, the WAHL Deluxe Color Pro. I was surprised at how affordable it was and decided to give it a try.

So how was it? The thing is amazing! I’m able to cut My Keiki’s hair so evenly and the best part is, he doesn’t really seem to mind the vibration of clippers. In short what took me close to an hour before, I now accomplish in less than ten minutes and the results are so much better.

Dad's Diary: Early Morning Moments

woke up this morning a 4:36 a.m. My Keiki was crying about something and running around his room. My wife and I lay in bed, each listening to see if the other was going to respond. Realizing it was a week night (her turn) my wife pulled herself out of bed and staggered toward his room.

The next thing I knew they were headed back into the master bathroom for a rinse-off in the tub. My Keiki had pooped and it was bugging him. My wife didn’t seem too discouraged by the early wake-up call so I just kind of laid there, my synapses firing somewhere between a dream state and conscious thought. Here’s the pathetic part, lost in my thoughts, I was asking myself how I planned to turn the preceding few minutes into a blog post. That’s lame. And I’m embarrassed by it.

But here is the story I most want to tell . It's really about my redemption from selfishness. I, did in fact, offer to spend the next hour with My Keiki watching Barney episodes on "demand" so my wife could rest up before I went to work. It was a cool experience. My Keiki calmed right down. I encouraged him to sit by me and he climbed on the sofa. I threw my blanket over his legs and gave him a squeeze. He looked at me and smiled, spending the next half hour or so resting his head on my shoulder.  It was a precious moment and one that I could have missed had I not made a little extra effort.