Tuesday, December 25, 2012

Quote of the Year


Our family friend Ranga has attended holiday gatherings with us for 20-some years. He came here originally from India, and doesn't have family here, so he became a part of ours. Hayden has been in the same room with him at nearly every holiday party since he was born. In usual Hayden style, he hasn't paid attention. He doesn't notice faces. Because of his Autism he gets an overall impression of a person based on their body type, or clothes, or hair color.  He used to follow people with Bill's body type at the park, because he didn't know his face. I had to watch him carefully. Today he asked me who Uncle Andy was; My mom's brother, who he also sees every holiday. But the quote of the year was this, when he noticed Ranga today:

"Why is Barack Obama here?"

Hayden, that's our friend Ranga. You've seen him before.

"What does he do?  Are you the President?"

No, no, I'm not the President.

Hayden, you have lots of friends with brown skin, like Fred at Cornerstone, or Orin at school. This is Ranga, he's Grandpa's friend. He's not the President.

"Oh." (not really getting it.)

"...Why is he that color?"

Because God likes to make everyone different.

"Oh." (Still not really getting it.) So at 10 or 15 minute intervals, he would just ask again.  "Are you the President?"  No, still not him.

After about the fourth time he asked, Ranga finally said, "Yes, yes I am the President."  My brother says, "Is your Secret Service entourage in the bushes out back?"  Mom explains why it's a tough job and no one should want to do it.

Meanwhile Hayden is in the other room playing Angry Birds and has filed the incident in his brain under, "Well that was interesting. Just met the President. Were Mario characters involved?  No...delete facial recognition and all memory of the event." So he'll probably ask him again at the next holiday. Unless he fails to notice he's even in the room, because after all, no Mario characters were involved.

Just another day in the life of the strange world of Autism. :)

Sunday, December 23, 2012

Thank You

It's almost Christmas, and I'm feeling sentimental.  


2006


Some of our Christmas blessings:

  • Hayden is asking "Why" questions. 
  • He asked me the other day, "How was your day at work today?" (showing empathy. This is maybe only the 2nd time I've ever seen it from him.)
  • He is pulled out of his special needs class to attend reading and math time with the mainstream 1st grade class.
  • His stomach doesn't hurt all the time.

2007

  • Rylie does not have Autism.
  • She no longer has diarrhea every day. 
  • Her eczema is improved. 
  • Her languag skills are excellent.
  • She's bright, and inquisitive, and sweet.
  • She loves kisses and hugs.

2008


Most importantly, in light of recent tragedies:  my children are alive. We have a home. We are free from want, after a year that has brought some desperate moments. We have people to call family, and people to call friends. We are watched over by several angels in Heaven. We are together, and take care of each other. We have hope for a better future.

2009


Hayden still has his challenges, as referenced in the previous post.  He still has rough days. But he is improving, and doing things I never hoped possible for him.  Rylie is growing stronger every day, and shows that she is not going to let her illness take her down. Thank you to those people who have made this possible.

2010


A big Thank you to

  • The staff, current and past, of Cornerstone Autism Center. For helping children with Autism live better lives.
  • Mrs. Hillis, Ms. Childers, Mrs. Martin, Mrs. Fox, and Mrs. Gliva at Jeremiah-Gray Elementary School. For helping my son, and his classmates, succeed at school and life.
  • My parents and brothers, for continuing to love Hayden unconditionally, and for supporting me as I explore new treatments and new ideas in the worlds of Autism and Nutrition. 
  • My brothers and dad, for getting me a new website to allow Hayden's story to reach even more families affected by Autism. (coming soon!) 
  • My friends, near and far, old and new, who listen to my gripes. Who know to call me and catch up, because I get caught up in my kids. Who read my blog posts, Facebook posts, Tweets. Who build me up when I'm down. Who remind me that I'm stronger than I think I am. Who remind me to get out once in a while and leave the kids at home.
  • The doctors and staff at Ortho Indy, for helping a little boy with Autism go through the process of healing a broken arm with courage and dignity.
  • Dr. Leslie Parent, for treating my kids' sniffles, strep, hives and more, and for having the strength of character to let us share Hayden with both her and his Autism doctor without feeling offended that there are many things about Autism that she doesn't know.
  • The parents of TACA, for holding parent meetings on their own time, and teaching new parents ways to bring their children out of Autism.
  • Staci Small, for answering every last email. For repeating herself because I wasn't listening. For being creative with supplements and recipes. For working hard to help families improve their lives.
  • Dr. Mary Lou Hulseman, for treating Hayden and Rylie. For going to conferences and continuing to learn more. For holding parent training sessions on her own time. For blocking out two days a week of her schedule just for her Autism patients. For responding to my frantic late night voicemails about hives and yellow skin. For helping me learn and for treating me respectfully as I ask a thousand questions. And mostly, for saving my children from Autism. Thank you for giving me hope.  

To all of you I am so grateful. Thank you for allowing me to share Hayden and Rylie with you. I hope you have a very Merry Christmas.

  
 
2011

2011 


(Don't worry, 2012 pics coming soon!)  :)  
Take care and enjoy your holidays!  
Sheila


Friday, December 14, 2012

New Discoveries



Choosing toys for their wish lists to Santa. Notice Rylie was indiscriminate and walked around with any toy she saw. She didn't understand that we were writing toys down, not buying them, but she left peacefully.

  • Rylie (age 23 months) recognizes the letters a, w, and g; her name in print, and can count in Toddler ("1, 2...10!  2...4...2..5!") She also has realized that the egg timer on the oven sometimes means that the bacon is done. "BACON!!"

  • Both my children can eat at Moe's Southwest Grill, which has a list of all the allergens in each ingredient option. Hayden got chicken, lettuce, tomatoes, and rice.  Rylie got chicken, beans, lettuce, and olives.

I warned Hayden before we went in that when someone enters the Moe's Restaurant they yell, "Welcome to Moe's."  He therefore thought it was pretty funny as we were eating every time they yelled "Welcome to Moe's!" and would repeat it and laugh. 


  • Both my children may have mitochondrial metabolism disorder. I will need to start learning more about it and possibly get them tested.  It would have contributed to Hayden's heart murmur, seizures, low muscle tone, gut trouble, and developmental delay.  Rylie's symptoms would be her constipation and failure to gain weight.  More info about mitochondrial disorders is in this article.  The good news about this is that it's information about what may be going on in their bodies, which can lead to more ways to help my children improve. The frustrating aspect is the addition of yet another diagnosis to both of their long lists of current health problems.

Rylie's most recent growth charts:


Rylie:

Hayden:

Rylie just saw Dr. Hulseman (the autism/special needs specialist) on the 12th. Hayden's next appointment with her is the 26th.  He is having yeast issues and trouble peeing again.  Rylie's issues were her distended and hard belly, hives, yeast, failure to gain weight (though improved since last visit), and possible reaction to amoxicillin (yellowing skin, hives, lethargy).




Coming Soon:  2 weeks off for all three of us!  I plan on taking their Christmas pictures and writing our end of year Christmas letter, so stay tuned!