Day 12 - Meet Daniel

Quick recap: Daniel was badly burned over 57% of his body on January 25th and is in the Burn ICU at UC Health Hospital where he's recovering... we are on Day 12 of his recovery.

So who is this guy - Daniel?

Daniel is our adult son. Daniel has an older sister Amanda who lives across the state in Grand Junction who loves him immensely. Dan's grandparents Wes and Susan (Dawn's parents) live about 20 miles away in Louisville, Colorado. They have been visiting Daniel in the ICU a few days each week and we welcome the company when they visit. Daniel's extended family and friends have all been supporting us in any and all ways possible from food deliveries, calls and cards and lots of prayers.

Jamie - how on earth are we so blessed to have Jamie in our lives? She's worked with Daniel (and all of us really) for over 13 years. Words just don't describe the time and effort Jamie has devoted to Daniel and his special needs. She has helped to develop and advance his abilities in all areas of his life... [I've got to stop with the superlatives or the tears will start welling up again].

Special Needs: Autism has been a part of Daniel's life from the earliest time we could start to see that things weren't quite right. Back in the 1990's (and maybe still now) it was difficult to get a diagnosis for developmental delays. Back when Daniel was diagnosed the incidence of autism seemed rare and was reported 1 in 10,0000 children. Soon afterwards it was 1 in 1,000 children. Nowadays the rate of autism diagnosed in children in the US hovers around 1 in 88 and may be moving towards 1 in 45.

Back in ~1994 doctors were reluctant to give any official diagnosis. We heard things like he's developmentally delayed, to pervasive developmental disorder - not otherwise specified (PDD - NOS) and eventually narrowed down to autism. We lived in Phoenix at the time, but we took Daniel to the UCLA center for pediatrics and met with a few doctors who were both leading two rather different interventions for children with autism. We visited the Lovaas Institute and met with staff there and also talked with the director of the Neuro-Psychiatric Institute to learn more about the latest interventions for children diagnosed with autism. Since this time a great deal of research and interventions have been developed, but for someone like Daniel the best and most productive therapy is a form of Applied Behavioral Analysis or ABA.

Daniel has been involved in some type of therapy before he was even 16 months old starting with Speech Therapy. We've had success with ABA, RDI, OT. We've tried interventions with food, nutrition, vitamin and food supplements, GF, casein free, specific carbohydrate diet. We've used music therapy, auditory intervention training, chelation therapy, hyperbaric chambers.... He (we) have seen psychiatrists, psychologists, counselors, DAN doctors. Schools, conferences, books, day programs were all things we have investigated and tried over the years. The point is - Daniel has worked hard (harder than you or I) his entire life to overcome the obstacles of autism. If anyone can prepare to do the long hard therapy of burn victim recovery it might be him. This won't be easy, but maybe just maybe he'll be accustomed to the workload.

These days Daniel and Jamie do therapy together in our home twice per week. Every week he participates in therapeutic riding horse therapy (hippotherapy) at the Right Step in Littleton and swimming at Swimlabs. We've learned that he really enjoys an occasional massage too, so we have a favorite massage place we go to: Symmetry Massage as it's a block away from our home in Denver.

Does Daniel talk? No, not really. He can make vocalizations, he has some limited receptive language and can respond with a small set of words if asked certain questions. He uses a talker (iPad with MyTalk app) to communicate, but has never taken to initiating interactions with it very well - that's something we've been working on for a long time. His iPad also has songs on it that he likes and some Disney videos that he enjoys. Daniel has great visual skill and he knows where the pictures that represent words is in the menu of pages on his talker. This limited form of communication as we use it is known as PECS. Here's a sort of typical page of someone who would use PECS to communicate although we tend to use photographs with Daniel of actual items that he might request.



Is Daniel injury prone? Up until October 2016 (broken kneecap at adult day program) Daniel had never visited an emergency room. Skinned knees, bug bites and colds were a part of his childhood like any kiddo, but he never had any major health problems, high fevers or recurring health issues.

Sleeping away from home? Apart from Adams Camp - three summer nights each year for several years Daniel has never slept away from home - we've always been with him, always. The shock (once he's aware of it) of the extended stay in a hospital alone may be hard for him - we don't know yet. We are prepared to sleep in his room should he require it or take other steps to help him through his long stay in the ICU and beyond.

Is Daniel in pain? Drugs dude... Pain management - Burns are REALLY painful. I mean like REALLY REALLY painful. Medications are a key part of recovery for Daniel (though he has a high pain threshold like no one I've ever known). One drug he was given initially for his injury is Fentanyl on a continuous drip. Fentanyl is something like 100 times more potent than morphine. As Daniel begins to recover he will be given less potent pain relief including Oxycodone, Ativan, and Tylenol.

[I don't pretend to be any kind of expert on this stuff, just trying to give readers an idea of the complex matrix of approaches to pain management that Daniel is being exposed to.]

All these medications are 'serious stuff' in the dosages his injured body is receiving. These medications have side effects and one of them is called ICU delirium which effects a large percentage of intensive care patients who are dealing with extreme pain. The best way to help reduce or prevent that condition is to move towards drugs that are taken periodically as opposed to a constant drip via IV. Daniel's team is switching him to those medications now that he is more stable after the intense surgeries he's had since the accident. Precedex is another medication that if tolerated may tend to cause less delirium than Versed and that's one medication Daniel has switched to. Oxycodone, Ativan and Tylenol may be given through his feeding tube so we're moving in the right direction. The way I understand it is that when given in bursts over time instead of continuously the brain and body have time between doses to be less sedated and "normal".

What does Daniel enjoy? Daniel enjoys watching TV, Disney videos and hanging out at home. Daniel enjoys time in the hot tub, going to his horse riding lesson, swimming in a warm pool (not cool/cold water or loud places), Daniel goes on hikes, snowshoeing, walks the dogs around the neighborhood and doing chores. There aren't many grown adults that seem to enjoy holding hands with their mom and dad and do their chores as much as Daniel. So while he exhibits many traits that other autistic individuals might have (distant and unsociable) he is quite affectionate and loving.

Perhaps one of his favorite pastimes is that Dan is a foodie! He enjoys the bustle of an active restaurant and shows his enthusiasm by smiling and cooing (sometimes rather loudly). Most everyone in restaurants are pretty cool with it (we get the occasional glare from some jerks), but mostly people share in his enjoyment of the moment. We've had Daniel on a gluten-free diet for many years as it helps him in many ways - not going into detail.

There was a time years ago that we could not take Daniel out to a restaurant as he would meltdown and it was not pretty. That was a hard phase for us as a family, but we persisted and it's really paid off. We can enjoy our time out and have a leisurely meal with him. And most servers remember him and know what he likes to order at the local places we frequent.

Can Daniel be alone? No not really. He isn't one to get into trouble or do something unsafe, but he cannot live independently or be safe without supervision. He seems to have a good general sense of things that might be dangerous and steers clear of them. The burn he received at home was truly an accident and nothing else. It could have happened to anyone and it's given me an elevated sense of caution working in the kitchen.

Does Daniel have friends? All the paid caregivers, therapists, teachers, and people that interact with Daniel (I believe) he considers them as friends. Maybe he sees us (mom, sister, Jamie and dad) as his best friends? That's all he's ever known. But childhood peers and buddies from down the street - that was never a thing for him. I hope he realizes the nurses doctors and staff in the hospital are his "friends" too.

What does Daniel do all day? When things were going well and in an ideal world Daniel would be thriving in an adult day program during weekdays and interact at home in the evening helping with chores and enjoying his life. For more than the past year we've struggled to find a stable and SAFE day program that Daniel can enjoy and that we feel is serving him well.

Our long-term goal for Daniel is to move to a carriage house we own in our backyard and live with caregivers who would assist with day-to-day tasks and enjoy all the activities he does now. He'd learn to live away from us, but be close to mama bear and we'd have some life independent from him too. There's no reason to believe that his burn injury will keep him from moving forward with our master plan. We're just taking a detour... I'll end this post with a poem we heard early on our journey with Daniel at an autism conference many years ago:

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…

When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."

The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland. 

Written by Emily Perl Kingsley