Autism parents have a lot in common

My son Tate is fifteen. Tate has autism. He was about two and a half years old when he was diagnosed. Parenting a child with autism is challenging at times, but also very rewarding. We have had a lot of interesting experiences over the years and gotten to know a lot of others who are also a part of the autism community. So many of our stories and experiences are similar. I recently decided to illustrate some of the most common and repeated scenarios I have heard about from others in the autism community and/or experienced myself. They are in no particular order.

If you can relate let me know. I will be adding to these so tell me what kinds of things happen to you the most: annoying things, rewarding things, kindnesses shown, and the ways you’ve had to educate others. I would love to hear from you. Contact me on my Facebook Page called Quirks and Chaos. The comments are temporarily turned off here.

We are all in this together!  -Lisa

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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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