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 sharon_rd@att.net.

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

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?

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?

I’m Finally Climbing OFF the Fence

For a very long time friends, co-workers, acquaintances and parents of my clients have wanted to know my opinion on whether or not they should vaccinate their children or not, especially for the MMR vaccine. For the most part my response has been that I was not comfortable telling someone to not get shots, but I didn’t see any harm on adjusting the schedule if that would make the family more comfortable. I’ve always made it clear that I do not in any way shape or fashion believe that any shot/vaccine caused my boys autism. They had signs of autism from the day they were born.
However, I was on the fence on whether mercury had anything to do with autism or not. This is a position very uncharacteristic for me, as I usually have an opinion. Like all parents who have children that have autism, I have read some of the books and articles that “explain” how mercury is the cause. So as people ask me about the mercury question I have retreated to the fence for several reasons. First, I grew up fishing in areas where the waters very near have higher than acceptable levels of mercury. We didn’t just fish [my family] went wade fishing (i.e. walking in the water while you fish), so the question in my mind was, is it possible that that my body had excessive exposure and that was the cause? In addition, mercury was probably present in my life more that many women my age. My father was a machinist. Machinist got cuts at work. It’s just something that happened. When he got a cut the infirmary sent him home with “black salve”, so when anyone in the house had any injury, especially a cut, we used the leftover black salve. As I learned mercury was an ingredient I wondered did my horrible clumsiness as a child cause me to be exposed to too much mercury through black salve. Also, for some reason, which I honestly don’t know, my family seemed to always have mercury to play with, which they did with bare hands. Added to this I know my husband also “played” with mercury as a kid. He remembers reading in Boy’s Life magazine how to clean pennies with mercury, which of course he had to try out. So as you can see I did have some exposure to mercury along the way. This in turn placed some doubt in my mind.
I had read enough about what the parents believe to know what was being taught in autism circles, but what about the scientific evidence? I kept hearing there was sixteen studies that proved vaccines had nothing to do with autism, where were they? I couldn’t find a list anywhere. The Today show ran a segment about it, but when I emailed and asked them to please send me the list of the studies, I got nothing. So I stayed firmly on the fence wondering how to resolve this issue in my mind…. Until the last couple of months.
As I do a lot, I bought several books from Amazon on autism, but this time I found one book that offered the other side of the autism controversy. I want to encourage anyone that gets that same question I get “what about the shots, do you think they cause autism” to read this book. It’s time for us to get the word out. Unequivocally, no, it does not. Please read: Autism’s False Prophets. It is time for the science to take a front seat. Yes, there are sixteen studies. Some of the studies are on autism and mercury and some on autism and MMR. Also available are the proceedings that removed Andrew Wakefield’s right to practice in England. It’s an interesting read. Page after page lists elements of Dr Wakefield’s study that did not have IRB approval, which in my opinion makes it null and void. After reading much of this document I must take the book by Paul Offitt, MD at face value simply because what he says matches what I have already read from those proceedings.
In the interesting keeping this short enough to read let me just list some things I found interesting:
• Dr Wakefield applied for a patent for a “safer measles vaccine” before he came out with his famous study then stated measles, mumps, and rubella should be given separately.
• When Dr Wakefield said he thought everyone should be vaccinated separately there were no individual vaccines available for measles, mumps, and rubella in his country
• Of the sixteen studies, none of them get 100% for study quality; however, Dr Wakefield’s study got 0%
• Many of those that have taken a stand and said vaccines are safe have been threatened
• Dr Wakefield accepted A LOT of money from the lawyer that was in charge of suing in regards to the MMR vaccine in England
• Five of the children in Dr Wakefield’s study were involved in that lawsuit before they were admitted to his study. This is clearly a conflict of interest.
• Many years ago, Thimerosal was shown to be safe in larger does than was present in any vaccine.
• Autism rates did not drop after thimerosal was removed from vaccines in California by law
• The viral load that several have stated was too much is actually much lower than it was when many of us were taking the polio vaccine
• Many of those involved in this controversy are associated with the law firms that are suing the government.
• One last point, during the trials, one of the scientists was asked to point blank deny that vaccines cause autism, but that is not how null hypothesis in research work. No matter how much you test the null hypothesis you can only say it is unlikely. Many have interpreted this to mean that even the scientist have doubts about the vaccines.
The most disappointing thing I discovered was how little the science has been discussed therefore only fueling the fires of this controversy by remaining silent. Let me encourage you that if you have the opportunity to talk to these families, please educate yourself on the scientific side of this subject.

Supplement Use with the Disabled Individual

Families that have a member with a disability are looking for answers. They want to know what they can do to help this person they love. Most of them want to do this as naturally as possible without using a host of possible chemicals. It seems logical that if something went wrong with natural processes of conception or gestation to create this disability then something natural should be able to cure the problem or at least make it better, so they look at the possibility of supplements.

There is a wealth of information available through many sources. Some of those sources are anecdotal and some are peer reviewed. Anecdotal sources are those sources where results have been reported by the person taking the supplement or by the family members of the person taking the supplement. Peer-reviewed sources are those sources where researchers have followed scientific method, they’ve obtain approval to pursue this research by a board or committee that insures that the rights of those being researched have been protected, they’ve done research in a methodical way, they’ve written their results then submitted the article to be reviewed by their peers. This insures that any research from these sources has followed guidelines and generally, that nobody should be hurt from following the recommendations they make.

Families and individuals with disabilities have felt forsaken by the researchers. The research takes years that they frankly don’t have to give suggestions they needed years ago. For the researchers much of the underlying problem is money or lack of money. If the research will only benefit a few people then it’s extremely hard to get funds to undergo the research. In addition, research on many of the supplements will probably never be funded because there is no money to be made on the hind end of the study. Supplements like B6 or magnesium are available over the counter for a fairly cheap price. It’s problematic to convince someone to fund research if they will have no return after the study.

Families, who are affected by disabilities such as autism, started years ago, passing on information about supplements they had used then subsequently saw an improvement in their affected child. Other families were grateful. There was at least something they could try that wouldn’t break the bank. Scientists were skeptical. There are many problems with this approach from the scientific perspective. How did you measure improvement? What about the placebo effect? Could some of these supplements be harmful?

I once had the pleasure of talking directly to Bernard Rimland from the Autism Research Institute on the phone. He gave me some of the best advice I’ve ever received in that short 10 minute phone conversation. He encouraged me to make sure my children, who have autism, were really getting a benefit from the supplements I was using with them. His suggestion was simple. He said, “Tell nobody who doesn’t have to know.” This levels the playing field, so to speak. If the people around your child/person with disabilities are biased towards believing wholeheartedly the answer to all their problems is giving them a supplement, they will believe they see positive effects once they find out your child is on a supplement. If the person working with your child/person with disabilities believes that supplements are a waste of money then they not only are not going to see any progress they are going to see regression. If nobody knows, the parent is given the opportunity to come in later and ask open ended questions. For instance you’ve given your child a supplement that others have reported improve language then the parent can ask, “how do you think his language is lately?” This gives the person you’re asking the opportunity to give a more honest response.

As a parent, I used that method of determining how any alternative treatments I was using were affecting my boys. I found it interesting that anything that had the desired effects for one boy did not have the same effects for the other. You could literally draw a line down a piece of paper, write their names individually at the top then list the treatments with a benefit under each name. There was only one treatment that could be listed under both of their names.

I have many concerns about the many supplements that are being offered for individuals with disabilities. I’m concerned about the costs to the family and the possibility of toxicity. Some recommendations far exceed the tolerable upper limits set for those nutrients. Some nutrients don’t have a tolerable upper limit set, but that’s no guarantee. That may just mean that nobody has reached that upper limit or if they have then nobody realized the problem was caused by taking excessive amounts of a nutrient. The costs to the family can be financial. Some of the supplements are encouraging an intake that costs in excess of $200 per month. Usually, those companies encourage families to put everyone in the family on those supplement. Some of these companies are using very high pressure sales tactics. I’ve personally had people tell me, “If you aren’t doing “this” for your child then you aren’t doing everything humanly possible”. Of course, the underlying message is “bad parent, you aren’t doing enough for your child”. In addition, some of these companies have engaged in acquiring sponsors to pay for others supplements. This concerns me not only for the family that is going to use the supplement, but for the sponsor family as most of the sponsors I’ve been aware of are families that have recently had a tragic loss. I fear the supplement companies are taking advantage of the sponsor families and their current state of grief.

The costs to the family that concerns me the most is the social capital loss. Social capital is how connected you are to your family, friends, and community. It is your emotional safety net. Those around you get tired of the many treatments and gradually that may be their reason for disappearing from your life especially if the family has been recruited as a salesperson for the supplement company.

My advice to those who are considering using a supplement is to take Dr Rimland’s advice. If you are going to try a supplement, tell only those who need to know and then ask open-ended non-leading questions. If someone is giving you high pressure to buy a supplement then tell them you don’t feel you can make an informed choice under that kind of pressure. Watch closely for any signs of toxicity. Re-evaluate on a regular basis if this treatment is beneficial. Know the signs of toxicity for the nutrients you are taking. Finally, as you give yourself permission to start these supplements determine under what conditions you would be willing to stop.

Regularly, make an appointment with someone you trust. This can be a one of the professionals you deal or a friend. List to them all the pros and cons of your current treatment then ask them to honestly tell you what they hear you saying. Do they hear you saying you’re having some doubts? Do they hear you saying this has been a great benefit? Do they hear you saying this is having too much of a strain? Or do they hear you saying this is helping you get through the day?

Families have the right to try supplements or any treatment they feel will be beneficial. Many families have seen some good improvements using these supplements, including mine. However, they also have the right to all the information. Just because something is natural does not make it harmless. Proceed cautiously; keep an open mind to the possible benefits and pitfalls.

The emotions of Starting a special diet

Starting one of the speciality diets associated with autism or any other medical condition or disability may have its benefits, but it will also have some risks. As a parent I always wanted to try diet solutions first. I was so confused at times. The educational "experts" would tell me, "there's no harm in it just try it", but then I'd talk to the medical "experts" who responded, "are you crazy? Do you know how dangerous that can be?" In the presence of the educational experts I felt I hadn't done everything possible for my child if I hadn't tried the diet or supplement they were recommending, but in the presence of the medical experts I felt I had placed my child in risk of great harm by placing them on a diet. I must say it was very confusing.

In our case, I had the oldest tested for food allergies. This seemed to satisfy both sides of the fence. He turned out to be allergic to many things, but the big food item was corn. Before the internet it was not an easy task to figure out how to eliminate corn from his diet. The allergist simply said remove corn, but not all corn is listed as "corn" on the label. My pediatrician I was taking him to at the moment replied pretty bluntly, "oh, you're going to be one of those mothers". His implication was that food allergies weren't really real, but in the heads of their crazy mothers.

It was an amazing transformation! He suddenly could focus long enough to do things he had never been able to do before. It was also very obvious when someone inadvertently fed him something he wasn't supposed to have. I had everyone trained to read the labels and look for corn syrup since this was everywhere and seemed to have the greatest effect on him, so frequently someone would excitedly come bouncing up to me and say, I found something he can have with the other kids that doesn't have corn syrup! When I'd ask what is was usually the answer was popcorn. As my heart sank, I'd go to pick up my child who was totally out of control. I'd try very calmly to get the person to say the name of the food they had just fed my child and ask them what the last half of the word was. Actually, they probably did us a favor. While there were many naysayers they usually became believers when someone fed him popcorn. It was a reaction that was hard to deny.

When I went to school I learned the difference between peer reviewed research and anecdoctal evidence. Now I do understand the skeptisium of my colleages; however, I also understand the desperation of parents who just want to help their children. It's taken me a few years to find where I want the balance to be on this issue in my life, but here it is. I want the parents to determine if these diets work for their child or not. I also want the child to be placed under as little risks as possible, so if a parent asks me to help them with any of the autism diets (or diets to help other disabilities or medical conditions) I give them a list of risks I want them to be careful about. When you remove foods that are a major contribution to the American diet the nutrients associated with those foods are also removed, so the most important risks is nutritional health. Second, the replacement foods can be extremely expensive if you are replacing the foods with a lot of prepackaged foods. Our family lived on the verge of bankruptcy for many years. I do NOT want that for the families I am working with, so I encourage homemade foods and lots of single ingredient foods. (There is no gluten or casein in that carrot.) The last caution is a little different. When you go on special diets those people around you in your community (family, friends, neighbors, church, school personell, etc.) are not sure how to handle this, so many times they just move out of your life quietly. This connection with others is called social capital. It is extremely important to protect your family's social capital, however, lifes challenges tend to erode this capital.

To summarize, if a person comes to me and wants to start a vegetarian diet I do not find ways to convince them not to start the diet. I try to assist the person in starting this diet in a healthy way. Many of the autism diets can be done safely. It's my job to help the family incorporate the diet in their lives in such a way that is healthy for the child and their family.