The Autism Diet

If he asked for it, I gave it to him! This
loaf of bread was supposed to be
sliced and buttered for a family meal
but Tate wanted it. I did not object. He
ate so few things. I was thrilled to
let him walk away with it. 

Got a picky eater? Is picky an understatement? I feel your pain but there is hope. There was a time when Tate ate only about a dozen things total. It didn’t start out that way. He ate baby foods okay and seemed to be a lot like his siblings were when he was a toddler. He ate a lot of finger foods and ate off my plate. But around age two and a half when the language regression hit us, many other signs of autism appeared. The stimming began with hand flapping. Then the refusal to eat almost everything we offered began. When Tate was around three he would eat so few things I could name them easily. And from the time he was three until he turned six or seven his diet consisted of about one dozen things, with very few exceptions. He ate popcorn, crackers, and chips, french fries, waffles or pancakes, grilled cheese, cheese pizza, cinnamon toast, and a couple of kinds of cereal. He would eat a peanut butter sandwich (with no jelly) and the peanut butter was smooth, not crunchy. He would also eat a McDonalds cheeseburger if it were plain. No other cheeseburger would do and he knew the difference immediately if we tried to trick him. Once in a while he would eat chicken nuggets but not usually. I made them available to him often hoping he would eat one. I do not know why he occasionally would but I was always beside myself with joy when it happened. I worried a lot about his calorie intake and his nutrition. There was not a vegetable or fruit in his diet. Well, except that he discovered apples about age four or five and I could coax him to eat one of those once a week or so. That happened sort of by accident I think. Tate used to love to get an apple from a bowl of fruit I have sitting on the counter. He would call it a ball and carry it around for hours sometimes. One day he was sitting on the staircase with his “ball” and I saw him examine it closely and take a bite. I watched him take a few more bites. I quietly cried tears of joy. Then I called my relatives and best friends to tell them about the breaking news. And probably if you are reading this blog you totally get why. This was huge. From that day on he would occasionally eat an apple.

Always a favorite, Cheetos

There were days when Tate ate nothing or almost nothing. There were other days when he would only eat crackers, or only eat popcorn. Nothing made me more annoyed than to get advice from others who said I was catering to Tate and he would eat when he was hungry. They thought I should just put food on the table and he would soon figure out I was not going to make him a different meal than the rest of the family. This kind of advice is ludicrous in my opinion. I’m not sure my child with autism even feels hunger the same way I do but I know if he does he can ignore it. Tate would have outlasted me. Once when he was a toddler he went for three days without eating. I was not trying to outlast him or introduce new foods. I had all his favorites available for him. He wouldn’t eat. He often refused food if his throat was sore. He could not tell me his throat was sore. I could only guess, usually because of a raspy voice or increased drooling.

Those who do not understand autism love to offer advice about how to feed a child with autism. Their advice often requires a tough love approach. Trying to wait out a child with autism is not a very effective strategy in my experience. And hearing, “He’ll eat when he is hungry.” only reinforces for me the ignorance of the one speaking. The difference between a picky eater who is typically developing and a child on the spectrum with food aversions is enormous. I believe it would be like comparing someone who needs glasses to someone who is legally blind. One is inconvenienced and one is handicapped.

I am definitely not an expert on food issues, nor have I dealt with them to the degree so many others have. Tate’s diet was never limited to one or two things like some others. I do not have a whole lot of answers about how to get a child to eat anything they do not want to. In the first place, compared to many children with autism Tate’s diet was huge. I know of a toddler with autism who had one food he would eat - mustard flavored pretzels. I was lucky to have a kid who would eat a dozen different things and a few of those could even be changed up slightly. Secondly, just because something worked for us does not mean it will work for the next kid with autism. And thirdly, the things we tried worked sometimes and not others. There did not seem to be a whole lot of rhyme or reason with Tate’s choices or refusals. And he sure couldn’t tell me what he was thinking or feeling.

The things I remember that may have helped the most are probably all things most moms of kids with autism will have already tried. Of course the first I have already mentioned in the examples of the chicken nuggets and the apples. I made things available to Tate, hoping he’d try them one day. I didn’t take the apples away from him even when he was rolling them around or just holding them. He bruised a lot of apples. We wasted a lot of chicken nuggets too. Another was that I pushed him without forcing him to try things. I could sometimes talk him into just licking something and then I made a huge deal out of him “trying” it. A couple of times those licks turned into bites and a new food to add to the list. Some of the biggest successes we had happened at school. Tate had a Paraprofessional he adored and in fourth and fifth grade Tate often tried new foods at school because he wanted to please the teacher he really liked. Having all the peers around him eating something may have played a big factor there too. Tate tried popsicles, cupcakes, watermelon, and lots of other things at school. Some of them he would continue to eat at home after that.

The seeds don't even cause him to flinch these days.

I did occasionally try the tough love approach, although it was not very tough really. I was so tired of McDonalds one day when Tate was about five or six years old. I told him I would take him for a cheeseburger but it was not going to be a McDonalds cheeseburger. Tate protested but I stood firm. We went to Wendy’s. I had tried other times to get Tate to try cheeseburgers from places other than McDonalds and had no luck. This particular day Tate agreed to try the burger. He ate the whole thing. And then he believed me. Other places do make good burgers. Days later he ate a Sonic cheeseburger. For several years then he would eat a plain cheeseburger almost anywhere as long as the bun was not toasted and did not have sesame seeds on it. Lately neither one of those things matter either! The day may be coming when he can tolerate a little ketchup on the burger. Who knows?

Just keep trying folks. If you can even talk your child into touching something new on their tongue you've made progress. Tate's diet at age 13 is not exactly a balanced one but he will try a new food without too much drama. His diet has definitely increased lately. Don’t give up hope for your child. It could happen for you too.

If you enjoyed this post then you might like It's Too Loud In Here or Don't Touch My Skin

Advice for the Advice Givers

I recently asked parents to tell me some of the worst advice they had ever gotten. There were some pretty ridiculous things suggested. I thought the prize for the absolute worst advice should go to the mother who wrote that she had been told to put whisky in her child’s bottle to calm him.

Have you ever been one of these well meaning counselors and offered unsolicited advice? Maybe not with advice as outlandish as putting alcohol into a baby’s bottle but have you ever offered someone advice that they did not ask you for? What motivated you? When you did it, did you have all the facts? Did you know the child? Did you know the parents? Were you really qualified to give advice at all? I’m guilty. I’ve done it. I try not to do it and have gotten much better at the realization that unsolicited advice is unwanted advice.

Here are a few more thoughts to ponder… What makes a person believe they are an authority on child rearing? Do they have seven kids or something? (A little joke there.) Did they get a manual that the rest of us missed out on? Did they take a bunch of classes on parenting? And who were their teachers? Were the teachers qualified?

I had a great example in my own parents. But, I learned what worked with my own kids, “on the job.” I know my own kids. I don’t know your kids. It is my responsibility to do what is best for my kids and it is your responsibility to do what’s best for yours. It is not my responsibility to convince you to do things my way nor is it your responsibility to convert the rest of us parents to doing things the way you prefer. Does it really matter if your kid has a pacifier 'til he is four and mine gave his up at age two? Really?  

It blows my mind when someone without children offers parental advice. I also find it hard to bite my tongue when a young parent with one child or even a couple, suddenly becomes an authority on child rearing and tells me what I should try. Believe me, I've probably already tried it! The things these parents are doing for their own kid(s) are successful so they decide they will do me a favor and pass on their secrets. Here’s the thing about that.... Believe it or not, there is not a “one size fits all” policy for much of anything. Here’s an example: One of the most common tips I have heard over the years goes something like, “Put the food on the table. If the kid is hungry enough he will eventually eat.” I say, “Yeah. That would have worked for two of my kids easily, and maybe a couple of them after a while, but for some kids it will not work. Two of mine would have lost an awful lot of weight while I tried to teach them this lesson.” Have you ever told your kid they were trying peas or else? I have. I have also had to clean up the vomit that landed all over the dinner table immediately following the pea tasting. What did that accomplish? It gave that child a long-lasting phobia about trying new things, made us both feel terrible, and it ruined a meal for the whole family. Have you ever forced a green bean into a kid’s mouth and watched it come back out his nose? What did that accomplish? You get the picture. And, by the way, those were not children with disabilities.

Tate and his duck Boris

But, if you want to hear about children with disabilities… Have you ever watched a kid go 3 days without eating because you couldn’t find anything he would eat? Yeah. Three days. Autism stinks.

Sydney will eat "anything"

So, since this is my blog, I’m going to give some advice here. It is advice for the advice givers: Stop telling people that kids will eat what you give them if you stop catering to their whims! Your kid(s) are not necessarily the rule and my kids are not necessarily the exception. All kids are different. One rule does not fit for every kid. One rule does not even apply for all kids with autism. A lot of kids with autism have a very limited diet, but not all do. I have known people with autism who eat almost anything. I have known a child with autism who would eat one thing, mustard flavored pretzels. I had a boy without autism who lived on waffles and not much else for his toddler years. He was the one who had a green bean come out his nose once. His pediatrician was fully aware that he only ate waffles, and was not worried. Guess what? He turned out fine. 

Tate, aged 2 ½ 

When I asked other parents about unsolicited advice they had gotten, many of the responses were about discipline. Some parents were advised to spank more. Some were told to stop spanking. Some were told they were too lenient while other had been told they needed to loosen up. Here again, my seven children required different amounts of correction and different kinds of discipline. One child needed a frown from me; a frown would stop him in his tracks. I am not going to debate spanking in this blog post or in the comments after from my readers. I will only say that a spanking is not equal to abuse and I respect a parent’s right to choose whether to spank or not. It is no one’s business except the parent involved. One of the comments I liked the most when I was seeking input for this blog post was from a mother of a child with autism who stuck to the child’s behavior plan. A behavior plan outlines the expected behavior and the consequences of breaking the rules. From the folks on the sidelines, the mother kept hearing, "Can't you give that kid a break?!" She says that she now has an “incredibly mature, responsible, social, caring, calm, young man” and people now understand, “a break was NOT what he needed at all. He needed the consistency we provided.” She goes on to point out, “NOW he can have a break!!” Kudos to this mother for staying the course, despite those who would have steered her in the wrong direction.

Some of the most recent balderdash I have gotten was from a random reader of my blog. She told me that the ABA therapy I had provided my son when he was young was torturous. She knew this because her little girl was in preschool with a boy who has autism and she had seen his therapy. I kid you not. Of course I immediately began to campaign against ABA therapy based on her vast research and knowledge of the subject. (Like all the sarcasm inserted here?)

What is a parent to do about all the conflicting, unwanted, unneeded comments and advice? I will tell you what I do. I have learned to smile, act interested, and then disregard the counsel given by all these generous folk. Most of us have people we can turn to for advice. If we need it we know whom we want to ask. But if you find you still feel the need to give advice, start a blog. People can read if they want and leave at any time they don’t. If you made it this far then you didn't take off, thank you for reading. Leave me a comment and tell me some of the "best" advice you've ever gotten. I want to see if anyone can beat the "whiskey in the baby bottle" thing.

You might like to read this post: Encouragers are needed. Be one. 

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Teaching Sydney (or TRYING to)

Impulse control. You probably have not thought much about how important it is to people unless you are close to someone who has very little self-control. The frontal lobe of your brain is the part that helps you stop yourself from doing or saying the inappropriate things that you think about. Believe me, impulse control is extremely important. Without it a person will constantly be in danger. They will break rules and laws. They will lie. They will lose friends as fast as they make them. THEY DO NOT LEARN FROM THEIR MISTAKES.

The frontal lobe of a person’s brain is damaged when they are exposed to alcohol in the womb. Fetal Alcohol Syndrome is 100 percent preventable. A huge percentage of the people in our prisons have FAS. It is no wonder. When you have FAS you barely stand a chance in our society. Sure, many of the children are adopted into homes with good parents. But, mom and dad can keep a child safe for only so long. They do grow up and they still have FAS. They still have no impulse control and they still need constant supervision.

Sydney’s lack of impulse control affects us every day. It shows up in so many ways. Sometimes it is funny but usually it is not. This morning I told her to stay in her room until 9:00 while I showered and dressed. She came into my room at 8:55 and said, “It’s 9:00.” Me, knowing I had five more minutes said, “It is?” She responded, “No, not really.” Then she asked me where her popcorn was from last night. I told her it was in the kitchen. She said, “I just looked.” I said, “So you left your room?” She said, “No I didn’t leave my room but I went into the kitchen to look for the popcorn and it wasn’t there.” She tattles on herself quite often and then talks in circles trying to fix what she uncovered, contradiction in every sentence. Sometimes I think she believes I am an idiot. Sometimes it is hard not to laugh right out loud when i should be scolding her too.

A few days ago she had lifesavers and was trying to open the packaging. She was with her daddy in his truck. He asked what she had and she quickly responded, “Oh, you wouldn’t like these” trying to convince him that she shouldn’t have to share. She forced the package open and dropped the first one in the floor. She said a word that society would not consider a curse word but one our family does not use. Shawn frowned at her and shook his head saying, “We do not say that.” She immediately tried to convince him that he heard wrong and what she REALLY said was “I’m missing out on that one.” He managed to keep a straight face, barely.

Doctors have told me that Sydney will not learn from her mistakes and I have seen that consequences do not really teach her much but I keep trying. A few mornings ago I told Sydney she could go upstairs and play Nintendo in her sister’s room if she did not wake her brothers who were asleep in their rooms close by. She assured me she would be as quiet as a mouse. She went upstairs and two minutes later I heard her singing at the top of her lungs. I told her she could not play Nintendo for a few days. She can tell me WHY she cannot play Nintendo and she can tell me she won’t do something like that again but she will. I know she will.

Sydney loves flip-flops. Flip-flops are almost as important to her as the air she breathes. The winter months when I hide them (yes I have to HIDE them) are torturous to her. A week before school was out we had a cold rainy morning. Sydney was very upset that I wouldn’t let her wear her flip-flops. I insisted she wear socks and shoes and take a sweatshirt. She asked if she could take her flip-flops in her backpack. I told her she could not. She asked why. I explained again that it was a cold day and I wanted her feet to be warm. When I picked her up at the end of the day, she was wearing flip-flops. It didn’t even occur to me she would have snuck them into her backpack. I have watched her do things like this for nine years and it still shocked me that she would openly disobey like that and not anticipate any consequences. I took all her flip-flops and put them up for a week. I believe it was the longest week of her life and she cried about it several times. Will she learn from it? Well, I know she will REMEMBER it but I do not think it would deter her from doing it again.

This past weekend we went to a little rodeo in a small town nearby. There was a fenced-in play area with four of those big bouncy houses and slides next to the arena. Five dollars got you a ticket to come and go all evening. Several times throughout the evening I allowed Sydney to go jump for five or ten minutes. The medication she takes for ADHD had long worn off and sitting in the stands was asking too much of her. (See? I’m a reasonable person.) It was hard to keep track of her among all the kids coming and going out of those houses but I managed. The last trip in, I watched as she ran over to a mom with a toddler. Sydney LOVES babies and I predicted quite accurately what I was about to witness. I was not close enough to intervene before it happened though! The mom was helping the toddler bounce on a corner of one of the play sets. Sydney crowded in between the child and her mother and tried to take over as caregiver. The mother was so surprised she actually turned the toddler over to Sydney for a few seconds before she realized what she’d done and regained custody of her baby. I grabbed Sydney and was too flustered to come up with words. This time I asked her Dad to explain what she had done and why it was inappropriate. He did. She listened but I honestly do not think she understood a single word about why it was not okay to walk up to a stranger and try to take their baby away from them. Sigh.

At the rodeo

Last evening I witnessed her doing a similar thing but it was not with a baby (thank goodness). A friend of ours was over and playing a hand held game when Sydney came over and crowded right it. She began touching the screen and intervening in the game without an invitation. If I had not stopped her she’d have had that video game in her own lap or been in the lap of our guest with her own body between that game and the owner. I can explain and explain but she just cannot help herself. If she sees something she wants, there is no willpower for her to use against those desires. I can only imagine what her teen years and adult life will be like. It is a constant worry for me.

I know Sydney can learn rules and abide by some of them but I’m not sure why some are easier for her to obey than others. We have a pool and she never goes near it unless she is given permission. She is able to behave herself (for the most part) during worship services. She doesn’t hit other people or tantrum. She is polite most of the time. Her ability to abide by some rules and not others has to have something to do with her ability to plan. There is that frontal lobe again. Being able to think ahead to the consequences of your actions based on past mistakes is controlled by that frontal lobe. Impulse control is managed by the frontal lobe. Rules seem so much harder for her to obey when there are other children involved. She can go a long time without getting into any real trouble but add a peer and she is going to find all kinds of ways to make that kid holler. She’s quick at finding ways to push their buttons. She invades their space. She plays much better with children younger than her. A six year old is almost perfect, but only one, not two. Although she is ten, age six is about the level she functions at herself. We are so lucky in that we live out in the country. A neighborhood full of children (and adults) would have brought so many challenges with it and so many dangers. Sydney’s playmates are her family members. Oh, and a dog, several cats, two calves, and a gentle old horse. She spends hours outside with those animals and her dolls. Sydney’s imagination is one of the most active I have ever known. Our dog and one of those calves have an amazing bond with Sydney. They do not care how many times she invades their space or how much she talks or how loudly she talks.

Sydney and Pepper

We almost never say “no” when Sydney wants something to eat. Number one: her preferred foods are healthy. Number two: the doctor tells us to push her to eat because she needs to gain some weight. Sydney still tries to hide food and lie about food. I have told her over and over there is no need because she can eat almost anything she wants, anytime she wants. One of the only rules I have is: no food the bedrooms. I often do find food and wrappers and dishes in her room but I do not impose any consequences for it. These issues surely cannot be from her memories of the orphanage when she was probably hungry, because she has no memories of the orphanage. But food issues could stem from anxieties, according to her doctor. I cannot imagine trying to live without the ability to fully control my impulses. What a confusing place the world would be. Trying to understand the rules and abide by them without the damage to your brain is hard enough sometimes when you are little. This little girl has a disability that was 100% preventable. Alcohol to a brain is poison and exposing an unborn baby to alcohol is unconscionable.

Past articles about Sydney: Saturday Morning with Sydney and Life with Sydney

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