Dietitians needed in home health care

Locally, there has been a very sad event the last week. A child, who had a great amount of medical needs was found dead at a pond. See his story here: Wylie's Angel. This child was so small it was believed he was only about 3 years of age, but he was really about 6 years old. Although the details have not come out yet one thing is obvious, this child was severely undernourished. As a Dietitian for an Early Intervention program, I see many undernourished children as part of my job. There are many reasons a child might be undernourished most due to health problems not neglect. These children are eligible for nutrition services through Early Intervention programs until the age of 3. After they graduate from these services, all other services (physical therapy, occupational therapy, and speech therapy) are all addressed by the school systems. However, nutrition is rarely included in the IEP (Inddividual Education Plan). To make it more difficult children can also receive PT, OT, and ST through home health agencies in addition to what they receive in school through a home health agency. Nutrition, however, cannot be billed by a home health agency (at least here in the state of Texas).

While I'm in no way excusing the caregiver of this child for their part in not providing him adequate care, I do believe that it is important that Dietitians be added to home health care. Hopefully, this would make nutrition services more accessible for these special needs children. While many pediatric specialists offices do have Dietitians in their offices I believe it is important to monitor these children much more frequently than can be done during a once or twice a year visit to the specialist. Home health agencies could accomplish this.

Parents need encouragement

As I considered possible themes for the blog this weekend, the possibilities were mainly trending towards a diet specific themes this week until I went to church this morning. Our pastor hit the nail on the head! Before I get into specific diet topics I want to take a moment and encourage the parents of individuals with autism or any other disability for that matter. As both a professional and a parent I have found that when "the experts" give you a diagnosis for your child they generally try to describe how that diagnosis is going to affect the child by giving a list (sometimes a very long list) of things this child will not be able to do.

I find the can't/won't do list to be very annoying. Let's make something clear. Whether you are talking to a doctor, a teacher, or what every kind of professional is working with your child they DO NOT have a crystal ball hiding in their office they are consulting that will tell them exactly what your child will or will not be able to do. I've heard the argument, we (the professionals) should not give the family false hope, so let me just ask a question. If those same professionals were to receive the same diagnosis wouldn't it make the process of raising and caring for that individual much more pleasant for all concerned if the family was more concentrated on working on possible positive goals rather than shooting down those goals before they even get started on it?

My feeling has been whatever goal the individual or the parents is willing to pursue should be encouraged. Maybe the final goal is not realistic, but if it's an interest it is possible for the individual or family to make progress towards that goal, so maybe the true goal is to get that individual as close to their goal as they possibly can. Even if they fall short following their dreams have given something positive for everyone to work towards, so take a moment and encourage a family affected by autism or any other disability.

Reflecting on the MMR vaccine controversy

One of the questions I'm asked most often is either, "should I vaccinate my child?" or "do you think I caused my child's autism when I vaccinated him/her for MMR?" For the most part I've tried to withhold judgement until I felt I had enough information. Since the GMC has rendered a decision I feel I can now form an educated opinion.

The GMC rendered an opinion on how Dr Wakefield's research was conducted. Their opinion was not whether there is a link with MMR vaccines and autism only whether the research of Dr. Wakefield and his colleagues was conducted following the proper procedures required of all scientific research. The document detailing their decision can be found here: GMC document. As I read through this document, I was surprised at how many issues there were with his research. There are many things that were done for which there was no approval to conduct that research or there was a conflict of interest due to being involved with an MMR legal case. I encourage you to read for yourself and determine if you are comfortable his research after you read this. I, personally, am not.

Dr Wakefield has issued a statement through the Age of Autism online newsletter. His statement can be found here: Age of Autism Statement. In his statement he states, "Our only “crime” in this matter has been to listen to the concerns of parents, act according to the demands of our professional training, and provide appropriate care to this neglected population of children."

As I read both the GMC findings and the statement from Dr Wakefield, I remember back when we were first looking for autism treatments for our two boys. The first time someone said to me, We can't wait for research to be done that would be too late for your boys, I was taken aback. Did they mean what they were recommending was not researched and if that's what they meant then how did I get in the studies that were surely going on? Or were they just after my money? At some point, I realized there wasn't any research going on and further more the autism experts had no plans of starting any research. Of course, at some point I also came to understand a very very large part of the reason they weren't starting research was because there was no funding for research. I can tell you I felt pretty hopeless. How were we, as parents, ever going to afford these treatments? Surely, insurance would never pay for anything that wasn't researched through the proper scientific channels.

While I've discovered that in some states some insurance is paying for treatments even those that don't have double blind placebo studies to back them up. I have to wonder, If twenty years ago the autism experts that dealt with my children had insisted on doing research that followed all the rules and proved that some of those treatments worked then wouldn't parents today have a much less of a cost burden and might we be further in our quest to find answers as to what causes this? Granted some of the treatments that people told me I absolutely must do for my children if I loved and cared for them are now gone. I more than others understand the urgency of treating these children now and not wanting to wait until research is done. I also understand that research can be our ally not our foe if it's done correctly.

To digress further on the shot issue, I don't necessarily think the current schedule for shots is right for everyone. I have and still do encourage parents to take the vaccination schedule at a pace they are comfortable and at a pace they have agreed with their physican is appropriate. I have found it interesting when listening to Defeat Autism Now! sessions and even Dr Wakefield's interviews I've never heard one of them say, Don't vaccinate your child. I feel parents should have some frank open discussions with the pediatricians about when to vaccinate.

How does Autism affect a family?

I think the answer to that question has changed over time. I have a great Uncle that although he was never diagnosed we wonder if he fit the criteria for autism, but Uncle Sissy lived during an era when there was no autism diagnosis, at least it was a rare diagnosis. Uncle Sissy, according to what my relatives tells me, was doing just fine when he fell off that bed at 18 months old then he quit talking. They called him Uncle Sissy because he allowed the girls to paint his fingernails. I don't remember his real name. From what I understand he enjoyed having his fingernails painted. At some point, in his life he was placed in a nursing home where he lived the rest of his life. I wish I knew more to tell you about him, but that's about it. I do find it interesting that he lost speech about 18 months old then later he enjoyed things other males would have found socially inappropriate. Did he have autism? Well, we'll never know, but I do find it a little more than coincidental. So I guess for his generation autism might mean living out your life in a facility of some kind.

Three generations later when boys were born I was told the diagnosis meant they would never have girl friends, never live independently, never have good relationships, but the thing that stuck in my mind was they said my oldest would never hold a pencil much less write or draw. The immediate impact on our lives was not something that was even addressed when they were diagnosed. There seemed to be a long list of things that educational professionals told us later, if you don't do then you will causing irreparable harm to your child. I felt what they were really saying was, you aren't competent to raise these boys. You need to let us take over and make the decisions.

As they went through school their diagnosis meant if they were going to be allowed to participate in extracurricular activities we, their parents, needed to participate with them. Of course, this is probably the one thing about their autism we enjoyed most. We loved being involved with our boys and probably would have been involved in everything they were part of even without the diagnosis, but now it was a necessity. It became necessary or at least desirable for me to educate myself about every little aspect of how to teach children then in order to get those techniches implemented it became necessary for me to be educated to be an advocate, which I did not only for my boys but for other children at other school districts.

At some point, we decided that it was more time effective and less stressful to educate the boys at home. All that parent training that was meant to teach me how to better assist the teachers teach my children was very useful in homeschooling. You see, since there was only two children at their school who had autism there wasn't an autism expert at the school, so I went to the same trainings the teacher attended only the teachers changed every year or two. At least when I was teaching them they had a teacher that had been taught something about autism.

It was suggested the oldest be tested for allergies since he had the worst allergic shiners (dark circles under his eyes) you ever saw. As it turns out he tested allergic to life. Most all the environmental allergies and many of the food allergies had a reaction. Through removing and reintroducing we decided that the only food allergy that seemed to affect him was corn, but corn seemed to be in everything. It also seemed to be extremely hard for others to understand. We eventually tried to simplify things and just encouraged everyone to read the labels and look for corn syrup since this seemed to be the biggest offender. Whenver he was fed anything with corn he seemed to have more asthma and his behavior was nothing short of wild at times. If nothing else he seemed to retreat farther and farther into the world of dinosaurs.

So in the short term autism as a diagnosis meant we had to become experts on subjects we never anticipated neeeded to know about then try some techniques that seemed really bizarre. The thing that surprised me the most was that the educational "experts" would encourage us to try things that our pediatricians seemed to think was absolutely ludicrous. I couldn't understand how I was supposed to handle this. What was I supposed to do when the professionals seemed to think the other professionals were crazy!

In the longer term, we haven't done too bad. Remember how the oldest was never going to hold a pencil, well, how did that same young man end up studying animation at the Art Institute? Hmmmm.... It seems nobody has a crystal ball. The boys have far exceeded expectations of most everyone. So as far as how the autism diagnosis affects a family, well, there are some things that are consistent from family to family but for the most part I feel the overall affect is as individual as the family. And the adventure continues.....