Minnesota Autism Mom

Tomorrow I take my son to the pediatrician for a little discussion about diet, nutrition, and GI issues. You may remember (did I tell you?) that last Thursday we spent the evening at the ER. Diagnosis – full of poop. He went on a laxative the next day despite his constant diarrhea. I would say “d” has been a constant question since birth. I have never known what it was supposed to look like and finally said to myself “I guess this IS what it looks like”.

But, now he is constipated. I guess. No shock. He won’t eat much more than carbs. Would you like a cookie, a noodle, or a piece of bread son? This is obviously catching up to him.

I mentioned earlier that I wanted to understand this whole autism diet/GCFC thing. I have read many an article about it, but never understanding if any of it was factual. In preparation I found this mayo.com article and I am more convinced than ever that I should not worry about this special diet. Not that I have, but the stupid subject has been brought up my relatives, neighbors, etc. I am not sure why it’s anyone else’s business what he eats, but yet autism = special diet. Well, forget that. Until I get some hard evidence that he will profit from it, I am not wasting my energy trying to get him to eat an incredibly restrictive diet. I would rather us focus on trying to become vegetarians and healthier at large, rather than restricted and impossible. If you are on this diet, I am NOT judging. This is a personal opinion and I do not care what other people eat. This is just my feelings on this topic today. Maybe tomorrow I will come to a new conclusion.

My son is 2.5, so is he is obviously still a toddler and so I don’t know that I can technically call him a resistant eater yet.  I guess the reason I believe he is or will be classified as such is that his diet is so limited. It’s not the same story as children that are NT (neurotypical) that are picky. His willingness to try something new or that we know he likes is nearly impossible. It’s well beyond a power struggle. It’s very, very hard. I keep trying to give him what we eat, but he won’t even try. Our biggest issue is protein and then 2nd is veggies, but old favorites like yogurt and canned fruit (most days) will not be eaten either. He is almost completely surviving on candy, cereal bars, mac n cheese, and jello (and more recently I can get him to take in a corn dog). It’s fucking ridiculous and annoys me probably more than it should. I know he has ASD, I know there are sensory issues,  but he doesn’t also have to end up being as big as a house.

I was unable to attend a picky eaters conference at St Davids recently, but I did pick up the book “Just Take a Bite” and I HIGHLY recommend reading it if you are in my camp. I would recommend it to all parents because they discuss the culture issues surrounding food. These are significant and cannot be under estimated.

My favorite part of the book is something I just read on the Dr Sears/attachment parenting website. We can present food, we can present food that is healthy and give options, but we cannot make a person eat. I am always saying to myself..just eat, eat this, please try that…but, after reading this simple comment…I need to be done. It’s my job to make, prepare, present healthy foods. After that, it’s his choice on whether he wants to consume the food.

Of course, this is overly simplified. It’s so easy to say…I’ll just give him healthy food! Ok, wow, the end…that was easy! Because that is what I do and I only pick this battle 1 time per day and I fail. I feel success if he eats a majority of a corn dog, some fruit and yogurt. SAD. He used to LOVE all 3 of these things. It’s this or another round of mac n cheese and sadly we have had those days. He spits out anything with a case (pea, bean), he still chokes on the smallest chunks of meat because of the texture. I think I am going to have to just hide the tofu in stuff. I am not sure I have any more choices. Don’t bother offering him a chicken nugget. I am pretty sure he thinks they are the worst. The good news is that hamburgers are starting to take the center stage. We can add that to the list some days. Peanut/almond butter is not desired and will not be eaten with much interest.

At dinner time, I present, he refuses, we get down from the table, and he wanders into the pantry, demands to be lifted up so he can check out the other foods. Most days he might wait 5-30 mins before looking around for something else. We, of course, show him back to the table and reintroduce his dinner. He may pick at it, he may not…he will find his way back to the damn pantry. We do this over and over. The dinner is left until the next morning because we never know when we are “done”.

On the plus side, I have his ABA program working with me much better now in the regards to food. This is not just a struggle for me alone. Now when I put bits of meat and veggies in his daily mac n cheese, they realize that I need help getting him to eat this stuff. I thought I was going to really lose it, when they were basically giving him only the junk food. They wouldn’t even crack his apple sauce or whatever. That was when I was about to yank him out of the program. I just thought – if they don’t get it, then I need to find someone that does. Luckily they responded when I made very clear that it is not acceptable to give a child junk food all day in the sake of learning and ease of the therapists.

His oral motor delay may be causing some of the problems and I immediately could be more creative and will be in the future. I just can’t let my little man eat sugar all day. Because not only does he eat sugar all day, he then hardly brushes his teeth. I am going to worry about his first dentist visit in about 4 months…until then, I will just keep trying on that detail too.

Here are some helpful links. HIGHLY, highly recommend reading – Just Take a Bite – I know there are other books. I just haven’t gotten to them yet. Have you?

Picky Eaters (discusses the book in more detail)

Sort of the same thing – Picky Eaters

About.com

(I will look for more as I have time)

I just finished reading “Autism’s False Prophets” and I would highly recommend reading it, even if you didn’t have a child w/ ASD. I believe everyone is bias and he clearly is a dr that sees his pt of view and is arguing it strongly and clearly.

Prior to having my son, I was told to consider spacing out vaccinations by co-workers (who happen to be teachers). Everyone said that they think vaccs are important, but also scary and shouldn’t be done all at once. The ASD scare was clear to me. I did the same. I did no research on the topic and was then was scared too by the amount of inoculations they wanted to put in my baby boy. I spaced them out. Did them when I wanted to and my son has autism today. I have no way to prove this, but I do not believe shots caused ASD in my child. I think he had a rough start and continues to be delayed today. Shots or no shots, I think my son would be the same.

So the first time I walked into the Autism Shop in Hopkins (the day after he was diagnosed), I was surprised and taken back by the woman in the store.  Her first question…”do you believe he has asd from shots?” Ummm…no, he didn’t have a traditional imm. schedule and blah, blah…Anyway, she dropped it. She moved on the GCFC diet.  She explained it wasn’t that hard to do and her daughter now goes to college..is cured or whatever. I was a little annoyed with her. I told her we just got the dx and were there to shop. She really wanted to discuss this and I felt overwhelmed by her need to educate me on the spot. She did this again the 2nd time Iwent in a few months later. I could not order certain products online, so I went to her store again. Same old crap and I couldn’t believe she was dying to bring this up again. I am not sure I will ever make a pt to go there again.

It seems like everyone is fearful of the all might shot these days. I see in newsletters put out by TACA, recommending to not give the flu shot or any other shot if your child has a dx of ASD. This makes being a parent very confusing. Is there weight to the argument that vaccinations cause ASD? Is it the mercury/thermisoal? I was tired of wondering and have started to read more deeply this week. Read online, read various books and after some serious thought, the most believable conclusion is of Dr Offit’s book. There is no proof mercury causes ASD. None. And Dr Wakefield’s conclusion that MMR/bowel issues are related to ASD has been all over the news lately…again and again disproving his theories. He was too quick to have found a cure and I see the media pointing this out today, but clearly the damage is done. How many people are not vaccinating today because of him? It’s going to take a long time to counter what has happened since the 90’s.

Anyway, I am going to try to conclude now (as I would rather be napping!!). I am not a huge fan of biomedical approaches. I am concerned about the desire to do anything and everything for a child. I worry about the emotional issues of proving you are a good parent by doing everything. I really liked Dr Offit’s comparison to polio. As he reflects on the desperate measures (and sometimes fatal) to cure a child of polio…we can easily see how history is repeating itself. It happens in all medical disorders that are not currently curable. Do you remember the cure for MS using bees?

I am skeptical of the GCFC diet, I think chelation is a horrible idea, and I most definitely do not think people should be scared of big “pharm”, but always cautious of well-intended, but uninformed individuals. In fact, that is a good way to wrap this up. There are A LOT of well-intended, but uneducated people. I am going to be extremely skeptical of the ASD cure until there is some serious evidence over a period of time. I am not going to let my baby be someone’s guinea pig. My new research topic…allergies/ASD/ and the GCFC diet. Where did all of this come from? Any recommendations on where to start?

Science Friday’s