You May Be An Autism Parent If...

Tate, aged 13

My son Tate has autism. He is thirteen years old. I will never appreciate the challenges that autism causes my son and our family but I do appreciate the people I have come to love that are part of the autism community. As Tate grows older and I meet more and more people affected by autism I find so much we often have in common. I came up with this list. Not all of it will apply to you but a lot of it might.

You may be an autism parent if…

1. you toss around words like perseverate, echolalia, and reciprocity in casual conversation.

2. you do not even have to stop and decipher acronyms like IEP, IDEA, ESY and BCBA anymore because they are part of your everyday vocabulary.

3. you know what a visual schedule is and have relied on one to help your  child to get through the day.

4. you have alarms on the doors of your home and your heart breaks just a little more every time you read about another child from the autism community who has gone missing.

5. your inbox is flooded with messages anytime there is a trending new “cure” for autism or a new theory about its cause. Relatives, friends, and even acquaintances are willing to help in this way. Got broccoli?

6. you have no need to keep track of a grocery list because your child only eats five things. (Broccoli is not one of them.) 

7. you know the names of almost every character from almost every animated movie ever made and you can quote much of the dialogue.  

8. you have learned the name of every Thomas the tank engine character, read train books until you are hoarse, and put together countless train track pieces with your child.

9. there is someone in your life who could use a breath mint, ought to get a haircut, or needs to lose a few pounds, your kid will break the news to them. No problem. It is just a service he offers. 

10. you hear clichés every day. “Everything happens for a reason” and “God only gives special children to special people” are phrases you have heard from complete strangers.   

11. you have tee shirts and jewelry with puzzle pieces on them and your car sports an autism awareness bumper sticker.

12. you never leave home without a tablet and a charger. And if the battery on your kid’s tablet goes dead you and your kid both may cry.

13. you know where every restroom and every exit is for all the places you frequent with your child.

14. the people at the few restaurants your child will eat at, know you and your child very well. They even know your kid’s order before you give it.

15. you use a transition warning before most changes, large or small.

16. you have ever laid awake at night either wondering how you were going to afford all the things your child needed or worrying about his future.

17. you silently scream inside when your child is taught about something like germs at school knowing it will probably begin another obsession.

18. you have ever had someone ask, “Your child has autism? So, what is his ‘special gift?’”

19. you wish there was some way you could convey your thanks to all your child’s therapists and teachers and paraprofessionals to show them just how much they mean to you. But you know there is no gift big enough and no words strong enough to tell them how thankful you are for all the things they do for your child.

20. you hate it when those in the autism community debate vaccinations, the use of the word “autistic,” or whether or not a “cure” for autism would be a good thing or a bad thing. And you wonder why we cannot all just respect each other’s opinions and get along.

Breaking Bad News, Tate Style

My thirteen-year-old son Tate has autism. Autism frustrates me. However, Tate does not. I adore my son and I am very patient with him. But, sometimes I want to shake my fist at autism. Autism keeps Tate from understanding so much about the world we live in. Autism keeps Tate from being able to verbally communicate well and converse. Lately we have found that Tate expresses himself better in text messages than he does verbally. I believe that it is partly because he can take his time. For Tate to converse with someone in person the other person’s very presence seems to intimidate him slightly. He is easily distracted and loses his train of thought no matter how patiently we wait on him to process our language and respond. Texting has helped Tate to be able to get his thoughts and feelings across to us. Tate often texts his adult siblings. They enjoy his communications very much.

Daisy and a box turtle she found

Recently, my dad, Tate’s grandpa, lost his beloved German Shepherd in a tragic accident. My dad lives right next door to us. His dog Daisy spent most of her time lying on a rug in front of my dad’s recliner. But occasionally Daisy liked to play outside in his yard and in ours. We live out in the country where there is little traffic and our houses are well off the road so we were surprised when Daisy ran right out into the path of an oncoming car and was killed.

Tate, because of sensory issues, has never liked animals. He especially avoids dogs. They scare him a little I think. Tate knew Daisy’s name but he did not call her by her name. He called her, “The neighbor’s dog.” I asked Tate on several occasions why he did not refer to Daisy by her name or even call her “Grandpa’s dog?” Each time he told me the same thing, “She IS the neighbor’s dog.” Technically he was correct. He had me there. He does not refer to my parents as “the neighbors” but calls them “Grandpa” and “Grandma.” However, the dog was “the neighbor’s dog.” I think it may have been one more way of keeping the dog at arm’s length for him.

Tate does not often show empathy or sympathy for others but I have seen it on occasion. Tate was worried about his grandpa being sad. He asked me about it more than once.

Left to Right: Tate, Titus, Emily, Regan,
Levi, Sydney, Bailey and Isaac. Dec. 2014

Tate broke the news of Daisy’s demise to his brothers and sisters in a text message. I believe this is the first group message he has ever sent. Always before he has messaged them individually even if he said the same thing to each of them. Following are the screen shots of those texts back and forth. My older kids are so good with Tate. They know him well and can often understand what he is trying to say even when he does not say things clearly. Notice how he tries to correct the spelling of “aye” and how he picks up on the way they voted with “aye” and then wants to take a vote with “not” too. 

Note: We live in Kansas. Three of the kids were together in Arkansas when Tate was texting them. Levi, aged 17, was at Bible camp as a camper. Bailey, age 20, and Isaac, age 22, work at the same camp in Arkansas. Tate wanted to make sure they ALL got the message. Titus is married to Emily and they live in Connecticut. Regan was in Kansas but not with us at the time. She was in blue in the text as she was the one who forwarded the text to me. I sure love my kids. They all six are so good to answer Tate's texts and communicate with him anytime he needs them. I am so proud of them all. 

You might also like to read Tate's Texts

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.

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