I am privileged to know so many wonderful parents that have children on the spectrum. I thought it would be interesting to ask parents of kids with autism and people with autism as well, to describe them using one word/phrase. What I got back from everyone was such an amazing array of descriptions 😊 I have listed 75 of the responses below.
Amazing and wonderful
Very emotional 😭 she is so extra
Cannot use one word to describe my two x although my no diagnosed husband could be described with the word ****head
One twin is wild and the other is special
Crazy, crafty, cheeky, lovely, snuggly, on the go 24/7 if he could
Compassionate and kind
Inspiring and fearless
Ray of sunshine
All of these responses melted my heart, made me laugh and were so honest. Thank you to all that gave me their response and this shows just how an autism diagnosis isn’t all that defines them. They are so much more and I am so blessed to have the children I have. This is my last post for Autism Awareness Month 💙💙💙
All kids can be picky eaters at one point or another, they want sweets over vegetables or don’t like pasta. On the other hand, parents of children on the spectrum know this is an understatement of their child’s eating habits and face daily challenges just getting their kids to eat.
Causes of Feeding Problems
There is an array of reasons a child on the spectrum won’t eat certain foods or refuses altogether. Some reasons include:
Oral Motor Skills – A child may have a jaw weakness that may prevent them from chewing his/her food. It can prevent proper chewing and processing of food.
Behavioral/Rigidity – Some kids with ASD have a form of OCD and get set in their ways when it comes to what they like to eat. This makes it difficult to introduce new foods or balance their diet.
Sensory Issues – If this is the case, they may avoid foods based on the smell, color, texture or even temperature.
Digestive Problems – If something causes stomach aches or acid reflux, a child may avoid it. By going to a gastroenterologist, parents can rule out digestive issues.
Lack of Self-Awareness – Some kids will over-eat or under-eat. They may eat until they vomit or eat a few things and stop not realizing they are still hungry.
My Own Challenges
I have two children on the spectrum and both have different issues when it comes to eating.
Leo – He is very sensory based and rigid when it comes to his eating. He smells everything he eats, even if it’s something he has had before. He can smell things I can’t even smell and we (our pediatrician and myself) believe he may have a higher sense of smell. For example, we made pancakes the other morning for breakfast and this time we added in a hint of cinnamon. The second we put the pancakes down in front of him, he started crying saying he didn’t like them. We took the plate back and added a plain pancake under the original. He literally took the top pancake off saying he didn’t like it and began eating the plain one. Also, he gets stuck in his way of having the same thing over and over again because it’s “safe,” he knows he likes it.
Lexi – She is behavioral, rigid and lacks some self awareness. We can trick her into eating something as long as she doesn’t know. One example, she will drink the kids Danimals yogurt but won’t eat a regular Yoplait yogurt. However, if I put the regular yogurt in the Danimals container, she will eat it. Just like Leo, she gets stuck in the habit of wanting the same things over and over again. Now with her lack of self awareness, we have to make sure she doesn’t just eat chicken nuggets all day long. She could have that for breakfast, lunch, and dinner – no problems. Obviously that isn’t a great diet, so we have to tell her no and deal with a bit of a crying fit before she will accept something else.
Their diet is limited because of these issues and we try to balance it out as best we can with supplements. But the list of foods they will eat is pretty short for kids their age
Chicken Nuggets (Only Chick-fil-A or Dino Nuggets)
Nutella Sandwich (we are working on PBJ)
Mac n Cheese
Apples, bananas and strawberries (so thankful for this!)
Muffins (only chocolate)
Cookies (only chocolate or peanut butter)
Chips (only plain or cheese)
Ice cream (vanilla or chocolate)
Cake pops (they each have a specific one)
This is a Complete list of what they will eat!
A Few Helpful Tips
Keep mealtimes calm and stress-free.Set a routine for mealtimes.Create a visual plan around mealtime.Teach rules about serving sizes.Look for signs of food intolerances.Look into supplements to fill in the gaps.
Well, I hope y’all enjoying reading through my own experience and tips. If this was new information, then I hope it helps you understand other that deal with this daily.
Thank you so much! Please feel free to post your comments or questions below!
For those of you who have children that are on the spectrum or know someone with autism, then you know the struggles and challenges that come with it. For those of you that don’t know or want to know more, I’m going to give you a sneak peak into our life and some of the things we experience.
What is a Long Term EEG?
My middle child, Lexi, was scheduled for a long term EEG this week. Long-term electroencephalographic monitoring (LTM) is used most frequently in the diagnosis and management of seizures and “spells,” but has also gained wider application in the evaluation of sleep disorders, cerebrovascular disease, psychiatric conditions, and movement disorders.
We were scheduled for a 48 hour LTM to rule out brain seizures since Lexi has staring or dazing spells. She can zone out for a few minutes and only physical touch will bring her out of it.
The Prep and Setup
We were scheduled for 1pm on Wednesday at CHOC in Mission Viejo. As we arrived, we are greeted and shown to our room on the Pediatric floor. Lexi was enjoying all the attention up until we walked into our room and saw the hospital bed; that’s when she sat on the floor pouting. Took a bit to get all her vitals and finally get her onto the bed. That’s when the technician came in to hook her up to the machine. We put a movie on and had her lay down so the tech could start working. It took 1.5 hours to get all the electrodes attached but surprisingly she did well. Once attached and wrapped to secure in place, we are giving all the instructions for our stay and I was given a tour of the rest of the floor.
Making it Through the 48 Hours
For the next 48 hours, it was a lot of fussing and trying to entertain with movies and games. She was brought meals 3 times a day and I was given a $10 food voucher each day for anything in the cafeteria. While in the room, there is a camera that records our whole stay to be able to go back over and review anything that came up irregular on the EEG. It was a long process but we made it through and on Friday late morning, we were given the all clear to be able to leave.
Finally Going Home
After the all clear, we had to wait for the tech to come in to start the removal of all the electrodes. They have to put a solution in her hair to dissolve the glue used to hold everything in place. It took about 30 minutes to get everything off and we were left with messy hair.
After quite a bit of washing and brushing, I got her hair up and get her dressed to head out. Due to policy, she had to be wheeled out of the hospital to the car in a wheelchair. However, Lexi was loving all the positive attention as we left.
My husband picked us up and we finally were done and going home to enjoy the rest of our Friday afternoon.
Thankfully, the results came back all good so we can check this off our list as an issue and move on! As much as it was a pain and tiresome, I’m glad we were able to get this done and not have to worry about any underlying issue.
Well, I hope this gave you a better insight to some of the issues parents with kids on the spectrum deal with and what the process is like. Let me know if you had a different experience or want more information in the comments!