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Friday, December 23, 2011

Selective documentation, is it appropriate or ethical in education or medicine?

Has documentation become more about the person documenting than the person whom we are documenting about? As we were once again in the position to need to advocate for our oldest child, who has autism, this week. At some point I looked at all the documentation lying before me with great disgust. Lying before me lay documentation that completely backed up what the educational institution said happened, but having been present at the meetings that were documented I couldn't help but notice those documents in no way reflected what truly happened. My husband, Son and I all clearly remember our son being asked to sign the documentation as it was written because the program my son wanted wasn't in the computer yet. Of course, we were assured it would be corrected when the program became available in the computer. So it's just a thought, but wouldn't it have been more ethical and honest to have written that on the documentation instead of leaving it completely out? I also found it interesting that the program was indeed changed to the one he wanted to be in, but they had no documentation showing when or why that happened.

So here's my question: Are we all now so afraid of the "powers that be" that we are doing those we serve a major disservice by not documenting all sides of the story? Are we documenting just to avoid liability when we should be documenting the needs of the individual?

I absolutely agree that we all have a certain amount of minimum documentation that must be done and I also agree that we should document in such a way that your organization is not placed in a situation where they become liable. If we are now omitting information just to prevent our oranizations from being liable how can we possibly be meeting all the needs of those individuals that need our help. We must document their needs before we can address those or their needs just fall through the cracks.

In our case, the documentation could have just as easily stated that the program he had selected was not available in the computer, but it would be switched when that option came available. Instead it was stated in such a way that it appears he never asked about the only program in which he was interested. While we will regroup and get past this hurdle, I ask those of you who are working in education or health care and are responsible for documenting the needs of others to ask yourself, are you serving the individual with a need or are you only just protecting yourself and your organization? I know I, for one, will endevour to make sure the needs of those I serve are failrly represented as well as the needs of the organizations who employ me.

Tuesday, December 20, 2011

Autism and Higher Education

You would hope that when your adult child goes to college you wouldn't need to document every conversation to protect their rights, but maybe would should have done just that. The last several days have revealed a large number of inconsistencies in what we were told and what the realities really are.

Our oldest graduated last year from the Dallas Art Institute (DAI) with a degree in Graphic Arts. This was no small accomplishment for him. He then moved on to the Fort Worth Art Institute (FWAI) to major in Animation. Everything seemed to be rocking along pretty well until the second semester when we realized some of the funding we expected was going to come to an end. When we set funding up through DARS for this second leg of his journey, his counselour commented that his DARS funding would not carry him through all the way to Bachelors. We had received a note from his DARS counselour stating that a P.O. had been sent for the next semester about 8 weeks into the first 11 week semester, so when bill kept arriving for his second semester we thought it was the "normal" delay that always seemed to happen when DARS was involved in any payment. At some point, we got nervous and the oldest went down to check and make sure everything was in order. The Disability coordinator called DARS and was informed that last semester was the last semester they would pay. I called and was informed the same thing, so suddenly there was a balance to be paid we didn't expect. As I was trying to figure out how we needed to handle this, I was also informed by the FWAI that his student loan money would run out before he finished his degree. I thought this was rather strange, but we prepared to pay the balance in payments. Our portion in excess of the student loans and DARS funding was about $17,000.

At some point, our son decided to go ask for himself why the cost of this had increased so much more than we were led to believe. He was told it was because he changed majors. You see, when we enrolled him the animation program at FWAI was so new they didn't have it in the computer. They entered him in the system as a Graphic Designs major. As he signed all the paperwork they checked Graphic Designs major and told him, in our presence, we have to check something, so sign it like this and we'll change it when Animation becomes available in the computer. In retrospect, signing the paperwork as it was presented was a mistake that will cost of thousands of dollars. It seems that even in the staffs documentation of the conversations they wrote that he wanted to major in Graphic Design. There is not one place where it is documented that he wanted to major in Animation and all the staff flatly denies he ever told them he wanted to major in Animation.

At some point, his major was changed in the computer to Animation. At this point the number of credit that would transfer from DAI dropped to 56 of the 92 he had earned, but nobody bothered to tell him or us of the change in the number of credits, so now we know why the student loans will also run out. Sallie Mae only finances a certain number of credits. They had no documentation showing why his major was changed.

Today our son when to the DAI to check and see if he could get more credit by going back to there. They also said he would only get 56 credits towards Animation because he changed majors. It seems he was supposed to start with Graphic Arts and at some point change to Animation before he reached the Associates Degree instead of after he reached the Assocates Degree. It doesn't matter that we were led to believe he needed to complete the Associates degree.

The bright side of the day actually seemed to come by accident. As he was discussing that his ultimate goal was to draw comic book art. It seems that even though he was counseled at the DAI that the appropriate degree for this kinds of work is NOT Animation, it seems to actually be Graphic Arts. In addition he may already have enough eduation to successful obtain a comic book artist position.

My husband and I went to FWAI today and have a print out of all the courses needed to complete Animation. Tomorrow our son will go get a print out of what he needs to complete Graphic Arts. Over the weekend he will be making a decision about which direction to go. I've encouraged him to weigh all the information (credits needed, cost to complete, and his future goals) and pray about the situation.

When he was younger I used to document conversation with educationally staff when I unsure about their committment to the end goal. Today I'm wishing I had continued this practice when discussing his college educational goals.

Monday, December 27, 2010

On Forgiveness and Food Reinforcers use with Autism

I've decided to combine two topics that I consider extremely important because in this case I personally can't seperate the two. I'd like to share my experience with food reinforcers and forgiveness. Forgiveness is not just something we need to give to other people. Sometimes forgiveness is something we need to give to ourselves. My number one rule when making decisions about autism is, "Make the best decision you can with the information you have at the time and never look back". I have found this rule to serve me well and be fairly easy to follow except when I discuss food reinforcers. Food reinforcers is the practice of using food, usually candy or high carbohydrate treats, to encourage someone to repeat a behavior. My middle son's education team used these reinforcers, in particular, gummmy bears, during his second grade school year. It seemed to be just the ticket! This was done with my complete blessing. He made wonderful progress and many of those students that assisted with this progress are still great encouragers for him today through social media, eighteen years later. He really turned a curve that year on his progress. All the later progress he has made has really been due to the hard work and dedication of the educational team and fellow students that worked with him that year.

Unfortunately, his yearly pediatric exam didn't happen until the end of that school year. At that time the pediatrician told me he had some major dental problems. This was a complete surprise since neither my husband or I have ever had a cavity and because we made sure our children brushed their teeth daily. Dental decay was not even on our radar. After a trip to the dentist, we found out he need $20,000 worth of dental work, which insurance would not cover. I was cautioned that his dental work could not be delayed as it was severe enough the infection would likely go to his heart if not done immediately. Every tooth in his mouth had either three or more cavities or was more than 50% decayed. My husband was slated to be laid off at the end of the month.

At this point the Mom guilt was pretty severe. How could I have not known this? Why did I authorize use of food reinforcers? His teachers were definitely not to blame. It was my responsibility to make sure the programs I authorized were appropriate. I had a truly hard time forgiving myself for a very long time, but if you hold onto the guilt then you can't allow for future growth. I had to let go of the guilt to be truly effective in making good decisions in the future. This was truly the a huge hurdle for me to overcome.

The problems with food reinforcers did not end with just switching his reinforcers. This was a major ordeal. The dentist absolutely refused to do the work in his office. He called the insurance company and told them that if he did this in the office they would then need to pay for counseling for himself (the dentist), myself (the mom), and my son (the patient). They would not budge. The work was done in the hospital, but we had to access of program for special needs children.

Now things became worse, I took him to the hospital to meet with the child life specialist, who helped prepare children for their hospital stay. She assured me that even though he would not have anything to do with her session everything would be fine. She said, they all drink the "giggle juice". After they drink the "giggle juice" they relax and everything is fine. This did not turn out to be true. He did not willing drink their "giggle juice" nor did he willing allow the antistetic. Since he was fighting them it took three antistetics. At this point, his heart stopped. After he was revived. The dental work was done.

Although this may seem to be an unusual case, I don't believe it is. I believe that most children who have autism are likely to fight in this situation. The problem wasn't a reaction to the antistetic. It was that he fought them. He did not have the necessary skills to understand what was expected of him or to actively participate by allowing the doctors to administer the antistetic. To me the solution here seems clear, the way to prevent this scenerio is to use other reinforcers. Children with autism frequently respond well to other things. In my son's case, we switched to hand stamps. He sometimes had stamps all the way up his arm by the time he came home at the end of the day, but it was just as effective.

While this may seem to be the end of the story, it is not. Every few years, he has needed major dental work due to some of the original work failing to be effective anymore, but the most difficult part has been the emotional toll. My son is having his wisdom teeth removed this week. He is truly scared. You see he remembers the whole incident up until his heart stopped. When we took him to the dentist to arrange the the removal, he was shaking and scared. They called me in to help calm him down. At one point, he burst out, "I'm having nightmares about people holding me down and putting a gas mask on me." Immediately, the doctor assured him that he did not use a gas mask. My son calmed some. He told the doctor our preacher had told him sometimes they gave people a pill if they were nervous. The doctor immediately prescribed a pill, which my son frequently checks to make sure I still have.

When you are making decisions you will make some mistakes. It's important to not only forgive those you may feel have faulted you, but more importantly yourself. If you don't let go of that guilt, your guilt can paralyze you ability to be effective or to deal with future consequences of the original decision. When those mistakes include authorizing a practice that can be harmful I feel it's important to share your experience with others, so they can learn from our mistakes


Sunday, September 26, 2010

Parents of adult children with disabilities need more guidance

Every time I think I've got this "autism mom" thing down I find there is something else I need to learn. Our latest challenge is insurance. Even though I work for a company that allows you to keep your disabled children on your insurance there is more to it that just signing up for the insurance. Twice recently we have received letters basically tell us one or both of the boys have been dumped from the insurance. This actually has nothing to do with my employer, but the insurance company themselves. Once this was initiated by a birthday then the next time due to the insurance company doing an internal audit. Like I already aluded this is not a nefarious attempt on my employers part to reduce costs. You see, I work for MHMR. There are a lot of employees, who also have children who have a disability. MHMR is implementing a system to try to avoid this happening again in the future, but at the moment one of the boys is still without private insurance. He does have medicaid, but since we have never used his medicaid he has never been established at a doctor's office that accepts it.

So this has me thinking what else is in our future that we don't know about? I've already become aware of programs that have waiting list years long. We should have put them on the waiting lists when they were little, but we didn't know these programs existed. My goal for the next year is to put together a list of resources parents of children who will disabled into adulthood should be accessing and a "to do" list of things the families should be doing to make sure their adult children have everything they need if their parent becomes unable to take care of them even for a short time. Please send anything you would like added to this list to

Sunday, September 12, 2010

An Insightful Response from a Student

I wanted to share a response I received when I posted a question on Facebook. My question was what do Dietitians want to know about autism. When I received her response my immediate reaction was, she gets it! It's always exciting to me to meet someone who truly has made an effort and has develop an understanding of the challenges families with autism need to conquer. So with Sarah's permission, I hope you enjoy Sarah's response to me.

I noticed your status. I'd like to share a bit of my own tumultuous experience with you. Maybe it will help you know what kind of information would be useful to somebody who is expected to help a family but has no experience with autism...yet.

Nobody ever explained autism to me, I learned from experience when I was 14 or 15 years old. I'll never forget all the questions I had my first time volunteering for "Structured Athletics for Challenged Children." We were responsible for watching and feeding the kids as part of a health & fitness day camp program. I continued to volunteer for two years. I helped out with weekly events, summer camps, and a spring break day program. I grew to love those kids. I think about them almost every day.

What do dietitians need to know? They need to know that autism is not black and white; it is a spectrum. They also need to know that there is no one, objective algorithm of care for all autism cases. If you feel lost and like you have to feel your way around, then you're probably doing it right!

NCP (ADIME based on my limited experience with autism):

A-ssessment cannot be overemphasized here!
D-iagnoses will vary.
I-ntervention will involve much trial and error.
M-onitoring will require collaboration.
E-valuation will rely on high quality communication.

And the following:

1. Children: I had never even heard of autism until I found myself holding the hand of an autistic child and being told "he has autism - whatever happens, don't let go!". I said terrified, "what's autism?!!!!" The children I worked with never used words, so how could I adequately describe them using any? They chose to simply "show" me everything. A video would be a good way to really illustrate what autism is. I don't think it can be adequately appreciated without being seen in action.

2. Parents:

a) My oh my was there so much nutrition related superstition! I watched mothers argue vehemently about sugar, artificial sweeteners, random vegetables, and even water, referencing websites, magazine articles, and popular diet books. It was scary and overwhelming to listen to them argue.

b) Working with these parents is different from working with most parents. Drop expectations of what a normal family life is! Make no assumptions. On my first day I asked one of the mothers why she didn't work full time and she looked at me like I was crazy. After watching her son for a few more days, I totally understood why.

c) At first I thought that the parents were "high strung" and "paranoid" but after my first week I 100% understood where they were coming from. ***It is important to make sure that RDs are informed ahead of time about what the parents are going through. Otherwise the dietitian's first impression will be "these parents are CRAZY!!!" and perhaps even blame the child's difficulties on them.***

3. Eating:

a) I found that a huge issue was getting them to stay seated and focused on eating. It was not atypical for a child to be midway through a sandwich, really enjoying it, and then JUMP UP and RUN OFF excited about something totally random and completely unrelated! All we could do was laugh and try again.

b) It was a real struggle to get them to eat without feeling like I was force feeding them. I'm sure I'm not the only one who has felt confused about how to proceed when you know a child NEEDS food and IS hungry but just can't focus enough to finish chewing something.

c) Letting them go without eating enough meant dealing with more grumpy and violent behavior later on. Keeping them well fed seemed to keep them happy, even if they didn't seem that interested in food.


Despite the inability to communicate with them in any conventional manner, I found that the children with autism were very, very deep thinkers and feelers. I noticed patterns in their hand gripping and in the movements and sounds they made. Each child had their own interests and own way of telling me things. By letting THEM lead ME as often as possible, we had many of what I like to call "nonverbal adventures" and "silent exchanges."

Unfortunately, I think that most people lack the empathy and/or patience to accept these children for who and how they are. All they see is a child who doesn't respond, a child who must be "stupid." They don't realize the vast amount of processing that is going on inside this type of mind, and the high level of sensitivity, and the potential for painful over-stimulation.

Of course there was lots of drama no matter how much experience I had with any individual child with autism. I thought that all of the issues we encountered meant that I was doing a terrible job. But the parents explained to me that if nobody had a nervous breakdown and the kid wasn't injured or lost, then it's been a great day! And that caring for a child with autism - or even just feeding them - means letting go of all preconceived notions of what constitutes success and learning to roll with the punches!

Sorry for the length!

Sarah Ruth Hoffman

Sunday, August 15, 2010

Frustrations of trying to stay on track

I freely admit that I give myself permission to splurge on my diet once in a while. I always make sure that that splurge does not include excessive carbohydrates since I do have diabetes. One of my spurges is an occassional hamburger; however, I do know that if I eat a hamburger and french fries my blood sugar will suffer. I, therefore, will order my hamburger either alone, with a yogurt, or if I go to Sonic with a small $1 tator tot.

Now I am highly motivated to control my blood sugar, so I'm persistent when I make my order, but here is how the conversation usually goes. Me: I'd like a cheeseburger, $1 tator tots, and a Diet Coke. Sonic employee: Can we make that a #1 for you so we can give you a discount? Me: no, thanks Sonic: but mam it's cheaper. Me: yes, I know, no thanks. Sonic: but mam, it's $1.50 cheaper. Me: yes, I know, no thanks. Silence.... Sonic: Okay that's a cheeseburger, large tator tot and a diet coke. Me: NO, I do not want the large tator tots I want the one dollar tots. Long silence....... okay your total is $....

So as I encourage people to order the appropriate size to not overeat I know you have to be really motivated and sometimes beligerent to get the size you want. I understand that everywhere you go they will ask you if you want to upsize, but isn't there a point where this becomes harrassment instead of customer service?

Sunday, August 8, 2010

How does that benefit?

One of my favorite Scouters had a huge influence on my life and how I evaluate the effectiveness of everything I do. Mike was more than willing to volunteer to help, but Mike couldn’t be out in the heat very long. You see he had a heart problem. I can’t tell you the details other than he had congestive heart failure because Mike pretty much refused to talk about it. He did not want sympathy. This landed Mike in the position of Business Manager for most of the day camps I ran. He sat in the air conditioning and handled paperwork that needed to be done and was the go to person if someone needed to find me for something. I kept him informed about where I would be at all times, but Mike’s role was much more than keeping up with that paperwork and keeping track of that Director, who did not want to stay in one spot! Mike was my sounding board.
This started off with me calling him about which the tedious details (i.e. Which kid was going into which Den, which leader to put with each den, and schedule changes). When I called I was always excited about all the cool stuff that was happening. As I would rattle off, Mike, we are going to be having the coolest hats you’ve ever seen, the t-shirts are the best design we have ever had, we are going to do this craft that is just so awesome, and this year we are going to take apart owl pellets to figure out what the owl had been eating! At some point, Mike would get quiet and he’d simply say, so Sharon, how does this benefit the boys? At that point, he’d make me go back through my list of way cool stuff and explain to him how each and every item benefited the boys.
Mike worked many an event with me and it became my habit to call when planning any event even if he wasn’t going to be there. As he made me go back through item by item and explain “how does this benefit the boys” I became much more confident about the quality of the program. If I couldn’t come up with a benefit that activity didn’t happen. When the family, scouts, and scouters came to me to thank me I always silently thanked Mike.
Today as I see babies, who are on lasix, I still silently thank Mike. You see, Mike was one of the subjects of the original lasix trials. Lasix is a medication that helps decrease the fluid around the heart and lungs. Mike succumbed to his heart condition several years ago, but I imagine him looking at the doctor and saying, but how will this help others. They weren’t giving him much of a chance for a long life. He knew he would probably die young, but he along with prolonging his own life he wanted to help others. I doubt he had a concept of just how much benefit he really would have for others when he started that trial.
Over the years, I have used his question to me as a measure of how well I’m doing my job whether it’s planning a scout activity, taking care of a failure to thrive baby or advising a family with autism. I haven’t done my job properly if I can’t answer this question. How have you benefited someone today?