Tag: autism awareness

Family

Autism Awareness Month: More than a Diagnosis

cloepottorff

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 💙💙💙

Family

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

cloepottorff

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 💋

Advice/Tips, Family

Autism Awareness Month: Long Term EEG

cloepottorff

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 💙

Advice/Tips, Family

Mama Motivation

cloepottorff

Life as a parent comes with joy, humor, excitement and love; but it also comes with frustration, exhaustion, stress and sadness.

In those low moments as a parent, finding a silver lining can make a world of difference to your outlook on life and family.

Being a mom of three is crazy; being a mom of three and two have special needs – insane! However, I always find a positive outlook to all the negative that comes with disabilities.

Just this past week, I had an early IEP (Individualized Education Program), scheduled a 3 day EEG and scheduled an audiology appointment (daughter might need a hearing aid). To top it all off, I took my daughter to the ER for a severely infected ingrown toenail, which they had to scalpel open. This is not including our regular schedule of therapy and preschool.

When I tell anyone about all this craziness, they always have some of the same questions for me. How do you do it all? Doesn’t this stress you out? Don’t you get worn out? Honestly, motivation is all that keeps me going.

My motivation is my children. I have to push past my stress of all I need to do, push past my sadness for what my children are going to have to endure; and give them reassurance that everything is under control and they will be okay with anything that comes our way. I show them that just because something bad happens, it doesn’t mean I give up or break down. That doesn’t mean I don’t take small moments to deal with my emotions but I get my feelings out and then get back to work.

The silver linings I found in the possibility that my daughter might be partially deaf in one ear – she can still hear with her right ear and once we get a hearing aid for her, her speech with improve as well!

The silver lining in going to the ER today – I was forced to make all my calls and schedule appointments since there was nothing else to do. Plus, some focused time on how my daughter felt while my son spent some quality time with grandma.

In all that happens in our life, we can learn from the struggles and help others in the same situation. Be thankful for what you have and realize that there is so much more to be thankful for than we give credit.

Hope this gave you a more positive outlook and some ideas for your own motivation in life!

Family, Opinion

Autism: Different Therapy Options

cloepottorff

April is Autism Awareness Month so I have decided to go into the different therapies that my son receives and just explain the purpose of each.

All of the following are my own personal experiences and understanding of each type of therapy. None of this should be taken for what you will experience. This is for informational purposes only.

ABA (Applied Behavior Analysis)

I feel this one is the most important for kids with autism. It is an in-home therapy that works on behavior, areas of developmental delays and almost any issue that your child is dealing with that is not age appropriate.

Right now, my son receives 10 hours a week of therapy and during those sessions, they work on:

  • Speech
  • Fine Motor Skills (Cutting, coloring)
  • Basic Social Skills (His name and age, turn taking)
  • Self Care (Washing hands, brushing teeth)

Speech

This one is a given since our biggest issue with my son is a speech delay. He has broken sentences and about 50 to 75 words but most people have a hard time understanding him since he has a mild slur as well.

He goes to individual speech twice a week for half and hour each time. Plus, an hour once a week as preschool.

Since he started speech, I’ve notice an improvement in his receptive speech, expressive speech and articulation.

OT (Occupational Therapy)

This one is helpful for some of my sons more mild challenges of sensory issues.

They help him with eating – he is a VERY picky eater and does not like too much variety. When I say this, I’m meaning he I’ll only eat a few things.

  • Chicken nuggets
  • Apple sauce pouches (only in the pouches)
  • Bananas, strawberries, apples
  • Muffins
  • Eggs
  • Nutella Sandwich
  • Chips

That is it. No other foods. So daily, this is all he will eat. He won’t try anything else.

So they help try to expose him to new foods and get him to at least taste the food. He goes to OT once a week for an hour.

Special Autism Preschool (IEP)

This may be my favorite therapy for Leo. He gets to go to a preschool, specific for kids with mild disabilities, for a little over two hours every day during the week.

I enjoy knowing Leo is getting social time with peers, he is out of the house and they work on things to prep him for kindergarten. Plus, they incorporate speech and OT into his learning to help reinforce what he is learning outside of the classroom.

I’ve notice a boost in Leo’s confidence and all other areas since he started preschool. Also, he loves school! He will get sad when I pick him up and is so excited when I drop him off. Knowing he loves school makes it easier to drop him off.

Well, that’s all the therapy Leo gets but I know there are a ton more out there for kids with different issues or more severity. Currently, Lexi is also taking part in all these therapies but for slightly different reasons, she does not have a diagnosis yet.

If you have any questions or would like to share a different therapy you, a family member or friend takes part in, feel free to share in the comments!

Thank you for reading!

Cloe 💋

Opinion

Autism Awareness Month Q&A

cloepottorff

So I’m just going to post a few questions I received and my answers. All answers are my opinion or point of view, not all my experiences will be the same for someone else dealing with autism. No two people with autism have the same symptoms or issues. 

Q: What did you think when you found out he had autism?

A: Surprisingly, I was more relieved than anything because now had a plan of how to deal with whatever was thrown my way. If you are wanting more of my diagnosis experience, check out my past blog post on it. 


Q: How has that changed your life?

A: It hasn’t changed that much. He goes to preschool like other kids but it’s a mild special needs class that works on speech. My life with autism isn’t that much different besides making sure he gets therapy to help in the areas he has delays. 

​​
Q: Is there anything he isn’t able to do since he’s autistic?

A: Not really. The only thing I can think of is maybe some independent things since he can’t talk too much yet and isn’t potty trained yet. 

​​
Q: Is he on a special diet?

A: Yes, but very mild restrictions. He can’t have dairy but that is it. I substitute milk with coconut milk and chocolate with carob chips. Cheese is the only hard one since there are substitutes but he doesn’t like the taste. 


Q: How did you know he was autistic?

A: When he was about 1 years old, he was very antisocial, didn’t babble or make eye contact, didn’t play with toys but was fascinated by wheels and light up toys. He didn’t respond to his name or understand simple instructions. Had issues with textures and restrictive clothing. They just seemed odd and I asked to make sure he was ok. Nothing wrong with those behaviors unless they would interfere with his future life. Started therapy and saw major improvements. 


Hope this was informational and thank you all for the questions. Let me know what you thing in the comments!

Happy Easter!! 🐣🐇🐰 
Love, Cloe 💋

Advice/Tips, Family

Autism: IEP Process

cloepottorff

I’ve decided to share some IEP experience tips and give other parents an insight to what they should expect. 

  • First, be prepared to have many, many meetings so they can evaluate your child. We, personally, had 7 meetings before the final meeting.
  • Second, always remember that you are your child’s best and only advocate. Fight for what you feel your child deserves and needs.
  • Third, have support during this process. This could be your spouse, family member or friend. Makes decisions easier and takes the stress of pressure off of you. 
  • Finally, Don’t feel obligated to sign when presented with their IEP recommendation. You can take it home to “think” about it. I took it home and asked my sons pediatrician and other therapists what they thought and they all thought he should have more time. 

I just recently received the decision of what the school district is offering for my son. They are giving him 1 hr a week of group speech and that is it! I requested to take the IEP home and decide what I think. 

I am going to come back at them with the request for at least 2 hrs a week of individual speech and at least 1 hr a week of OT. 

Once they review my request, they will schedule another meeting and I will find out if they will be adding my request or if they don’t feel he needs the extra time. 

*I will post an update once we get the final decision.*


Please feel free to share some of your experiences or any comment or questions you have! 😁