Family

Autism Awareness Month: More than a Diagnosis

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.

  1. Amazing and wonderful
  2. Hilarious
  3. Very emotional 😭 she is so extra
  4. Crazy
  5. Passionate
  6. Caring
  7. Charm
  8. Lovable
  9. Cannot use one word to describe my two x although my no diagnosed husband could be described with the word ****head
  10. One twin is wild and the other is special
  11. Thoughtful
  12. Genius
  13. Sweetest
  14. Crazy, crafty, cheeky, lovely, snuggly, on the go 24/7 if he could
  15. Happy
  16. Intelligent
  17. Content
  18. Kindness
  19. Insightful
  20. Energized
  21. Gorgeous
  22. Explorer
  23. Awesome
  24. Perfection
  25. Unique
  26. Extraordinary
  27. Compassionate and kind
  28. Inspiring and fearless
  29. Creative
  30. Curious
  31. Messy
  32. Exciting
  33. Strong
  34. Outgoing
  35. Brilliant
  36. Worthy
  37. Fun
  38. Loving
  39. Special
  40. Empathetic
  41. Sociable
  42. Talented
  43. Intense
  44. Fascinating
  45. Bubbly
  46. Unstoppable
  47. Quirky
  48. Sunny
  49. Happy feet
  50. Focused
  51. Determined
  52. Handsome
  53. Advocate
  54. Wonderful
  55. Unpredictable
  56. Spirited
  57. Miracle warrior
  58. Giggles
  59. Friendly
  60. Innovative
  61. Encyclopedia
  62. Smart
  63. Truthful
  64. Comedian
  65. Tinker
  66. Strong willed
  67. Stubborn
  68. Exceptional
  1. Brave
  2. Adventurous
  3. Enthusiastic
  4. Quiet
  5. Ray of sunshine
  6. Animal lover
  7. Best friend

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 πŸ’™πŸ’™πŸ’™

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Family

Autism Awareness Month: The Diet Challenges Of Children On The Spectrum

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

Breakfast

  • Eggs
  • Pancakes

Lunch/Dinner

  • Chicken Nuggets (Only Chick-fil-A or Dino Nuggets)
  • Danimals Yogurt
  • Nutella Sandwich (we are working on PBJ)
  • Plain noodles
  • Mac n Cheese

Snacks/Treats

  • Apples, bananas and strawberries (so thankful for this!)
  • Muffins (only chocolate)
  • Cookies (only chocolate or peanut butter)
  • White rice
  • Chips (only plain or cheese)
  • Ice cream (vanilla or chocolate)
  • Cake pops (they each have a specific one)
  • Popcorn
  • Goldfish/Graham Crackers

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!

Cloe πŸ’‹

Advice/Tips, Family

Autism Awareness Month: Long Term EEG

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.

Lexi as we arrived at the hospital
Finally all attached and wrapped

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.

All dressed and ready to go

Little diva getting wheeled out

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!

Thank you and hope you enjoy your weekend!

Cloe πŸ’™