Category: autism picky eating

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Autism and Very Real, Very Painful Sensory Issues

Autism and Very Real, Very Painful Sensory Issues

I’ve written many times about the sensory issues that Rob and Casey deal with every day. What continually shocks me is that people think their sensitivities are just made up – or that they are just being brats and doing what they want. Let me tell ya – I am furious when that happens!

Someone insisted Rob wear a different type of shirt to the fair last week. I wasn’t there to stop it. The heat index was well into the 90’s even in the evening. By the time Rob got home, he had blotches of red all over him and was swelled up. Thankfully, a cool shower, the AC and baby powder helped soothe his skin. He will never wear that shirt again.

Rob doesn’t choose to wear the same types of shirt because he is being a brat. He wears them because they are comfy and don’t irritate his skin. He needs those shirts to keep his anxiety in check. He needs to be accepted as he is – sensory needs and all! He is willing to try new shirts for short periods of time and that’s all I can ask of him. When he is ready, he will wear different shirts again. When that will be, I have no idea. But I’m okay with buying him what he needs to be happy.

He is often called a picky eater. While it does seem like it because there are so many things he won’t eat, it’s his sensory issues, not him just trying to get his way. Anything gooey will make him gag. He has tried new things in the last year and every gooey thing makes him gag. He keeps trying, but him eating pudding is just not that important. There are plenty of healthy choices that aren’t going to make him gag. It’s not that big of a deal. He loves fruits (fresh, not canned, tho he will eat canned pineapple) Vegetables, especially peas and corn on the cob. (He won’t touch creamed corn or peas) and most meats (except lunch meat like bologna).

He won’t eat most cookies or candy. He does love certain types of chips (like his mom! 🙂 ) He used to love spaghetti, but can’t eat it now. I’m not sure why – but I’m assuming at some point, the tomato sauce upset his stomach and he thinks it will every time he eats it.

Crowds bother him. He can handle them for short periods of time, depending on what he is doing. Certain pitches of sounds cause him pain, but that seems to be getting a lot better. He doesn’t feel pain from bruises or cuts. He doesn’t feel water that is too hot. I have no idea why he is so sensitive to the feel of clothing when he doesn’t feel other things. But – I don’t need to know why. I just know what he needs and that’s all that matters.

Clothes don’t bother Casey. She feels when water is too hot, but she also seems to not know when she is hot, if that makes sense. She wears heavy clothes on warm days, simply because the calendar in her head says she should. She doesn’t taste salt, so she wants to pile salt on everything. (I limit that!) She is more sensitive to sounds and will put her fingers deep in her ears to protect herself.

Gooey foods don’t bother her, but her doesn’t like to get anything on her hands, like paint or mud. She will let me paint her hands for a craft, but she needs to wash right away. She doesn’t feel pain from cuts, either. Several years ago, she was taking forever getting ready to go to Hopewell. When I opened the bathroom door to check on her, she was sitting on the edge of the bathtub with a box of band aids trying to stop the blood that was pouring from a 5″ cut on her leg. Apparently, her brand new mattress had a spring pop up thru it and she cut her leg in her sleep. It took 16 staples to close the cut. But – she never cried from the pain. She never told me about it.

It’s not always easy living with their sensory issues. I would love to see Rob in jeans and a flannel shirt. But it’s not going to happen right now and I can accept that. It might happen in the future – it might not. There is no way of knowing and that’s okay, too. It’s hard some days when her needs are completely different than his, but we figure it out. Probably not always in the best way, but in the best way for us.

Please, please – let your child do what they need to be happy and comfortable. I understand your frustrations, but how frustrated we are is nothing compared to the pain they feel at noises or touches. Our frustration may come and go, but their needs are constant. Imagine how you would feel if it was painful to be in certain restaurants because of the AC (Casey and Rob both avoided several places when they were smaller. We couldn’t use the AC in the car because Casey just cried.). Imagine your frustration if clothes were painful and you were forced to put them on anyway. You would have a meltdown, too.

I know parents worry about their kids getting the right nutrients when they will only eat chicken nuggets and pizza. Keep offering very small bites of other foods. And keep in mind that it might be the smell of the food that is the problem. It’s all trial and error. Yes, it’s exhausting, but you never know when your child might decide to try something new.

Your child’s sensory issues are real. They are painful. They are uncomfortable. They may just be an annoyance. Every person has different needs and to different degrees. Follow your child’s lead and let them be the amazing person they were created to be. Trying to force them to be something else will only cause pain and heartbreak for all of you.

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Is a Healthy Diet Possible with Autism?

autism picky eating

I had to take the kids to their yearly neurological appointment a few days ago.  As usual, their weight was a concern to the doctor.  It’s a concern for me every day.  For those of you living with picky or compulsive eaters, you know the daily struggle I face.

Both of the kids are on medication that will stimulate their appetite.  While they tolerated this well when they were teens, it seemed that as soon as they graduated, the weight started piling on and now I feel guilty because they have gained so much.

I’m worried about diabetes and their heart health.  I have taken strong measures to make sure food is limited for them, but it’s so hard.  I know Casey is full a long time before she stops eating.  She will stop and take a deep breath and then continue eating.  She will eat until the food is gone.  I don’t know how she doesn’t get sick.

I fix a plate for her with small portions and when she wants seconds, I make that plate, too, with small portions.  Once I put food in the refrigerator, she considers it a leftover and refuses it eat it, so I just put everything away quickly.

Rob knows when he is full and he will stop eating – usually.  If he thinks he can get away with it, he’ll sneak more of his favorites.  He is 5’10” so sneaking is not something he is really good at!  Most of the time, I can tell him he’s finished and he’ll put his plate in the sink and go find something to do.

At this appointment, Rob had lost a few pounds, but Casey gained some.  I am trying to figure out how that is possible.  She won’t eat chips or snacks like that.  Cookies and sweets are limited – if we have them at all.   I don’t let them drink Coke or other soft drinks.  Casey walks miles almost every day at the workshop and we walk as a family several times a week.

I’m sure most of you understand what I’m talking about.  I pack Rob a lunch every day.  He is so picky about what can be in it, that the contents rarely change.  He takes several fresh fruits (but so many fruits are high in sugar!), rice cakes, carrots and a small pack of fruit snacks.  If we have leftovers that he likes (Only meat or potatoes) I pack those, just to be sure he has something to eat during the day.

Sometimes, I’ll pack noodle soup or cereal.  I am constantly trying to think of things he will eat that I can pack easily.  Casey takes a lunch occasionally, but her lunch is easier to pack.  She loves ravioli and other convenience pasta.  I hate packing that, though, because I know how many calories are in those foods.

Unfortunately, as picky as Rob is, the foods he loves are all high in calories.   French fries, chicken nuggets, pizza rolls – all things he would happily eat every single day.   Of course, just because he wants that stuff, doesn’t mean he gets it, but still, it’s hard not to buy when I know he will eat.   I’m curious about what other parents do?  Do you give your child the “junk” food to make sure they eat?

I’m so lucky that Rob is willing to try new foods now, but that doesn’t mean meals aren’t still a struggle at times.  I try to plan so that at least part of the meal is something he likes, but when spaghetti is for supper, I have to think of something else for him.  I refuse to make two meals, so sometimes, he has waffles for supper.  And I feel guilty knowing that isn’t especially healthy for him.

Casey loves vegetables and would happily eat nothing but those for meals.   Rob loves peas and green beans and will eat corn, if it’s just a small helping.  Potatoes are a huge hit, but they have so many carbs in them.  He will eat many types of fresh fruit, so I have always those on hand.  (But – why is the healthy food so much more expensive than the chips and cookies??)

So, my kids have a meaner mom now.  I’m going to get even more strict about what they eat.  We rarely eat fast food, so that’s not a big problem.  Casey is taking a water exercise class twice a week and Rob is doing aquatic therapy.  We’ll try to walk more, but I have no idea what to do when winter hits.  I doubt either will walk on a treadmill.

It’s easier with Rob.  If Casey wants something, she smiles her sweet smile and says “please” and people give in to her when I’m not around to tell her no.  Rob doesn’t do that.  She will sneak food.  He will look to see what he wants, put it away and then ask for it.  If I say he has to wait a while, he’s ok with that.  She is not pleased when she is told to wait.

Eating healthy is hard enough when the family is typical and people are always in a rush.  At least, we aren’t rushed every day, but the kids both eat fast and I know that causes weight gain.  I also learned that not sleeping well can cause weight gain.  Since Rob is sleeping better, maybe that will help him lose a little, too.

I thought about using a fitness app to keep track of their calorie intake, but that seems nearly impossible when they can’t tell me what they ate during the day.  So, I’m determined to prove that eating healthy can happen with people with autism.  They won’t be happy, but the limits are being set.

Protein won’t be an issue for either one, nor will eating fruits and vegetables.  Grains will be tough, as they only eat buns with sandwiches.  Cutting out the convenience foods will be the hardest.  I’d love to hear how you did it with your child with autism.

Their doctor said that being more active is what they need.  (really – you think?)  They both love to walk, but we need stuff for rainy days.  Any ideas?  and it has to be fun or something I can do one on one.  Neither is coordinated enough for jump rope or anything like that.  I have a small trampoline they might try.

So – do you worry about healthy eating with your child or are you just too tired to worry about it?  (And believe me, I get that!)   What do you do to stay active?  I know for many of our kids, being overly active is a problem.  Do you try to do something with your child to burn off that energy or just let them run as needed?

Thank you!  Healthy eating!