Jaisha's Story

My little angel had quite a rough start in this big old world. When Jaisha was 9 days old I was rocking her when I noticed the color in her face fade to a pale gray. I immediately rushed her to the pediatricians office. That day began a roller coster of adventures (which I can call them now).

When the physician came into the room she immediately took Jaisha out of my arms and said she was having a seizure, she was rushed down to the emergency room (looking back good thing her doctors office was in a hospital).

Once in the ER the doctor did a spinal tap, when she stuck that huge needle in Jaisha's back she didn't even cry she was lifeless laying there. The doctor said we were going to have to Life Flight her to Primary Children's Hospital in Salt Lake City if she could not stabilize her, however she luckily did and she was rushed via ambulance instead.

That night was one of the worst yet inspirational days of my life. On the ride up to the hospital I kept thinking to myself "oh a seizure, no big deal they can fix that" well I could not have been more wrong.

Once checked in, I called a friend of mine in our LDS ward and asked if someone could come up and give Jaisha a blessing for health. About 5 minutes after I hung up the telephone two LDS Missionaries came into the room to see if anyone needed a blessing. You don't have to be super religious or even be of the LDS faith to think that is a little coincidental.

However, things got worse for my little angel, she was losing her grasp on life that night, she could not hold her oxygen saturation's and had to be placed on life support in a medically induced coma.

Test after test came back negative, the spinal tap was normal, the cat scan normal, the heart tests normal. The second day there I got my answer after the MRI. The doctor told me my daughter had encephalitis of unknown ideology which is a fancy term for inflammation in the brain. They explained to me that when the brain gets an infection it causes inflammation which in turn creates small holes in your brain tissue and leaves residual damage. They told me 1/3 of her brain was inflamed and most likely she would be so severely mentally handicapped she would need to have to reside in a residential treatment center for care.

That night I prayed harder than I ever have in my entire life, I prayed it was me instead I asked God why. I have to say looking back I had this strange sense of calm which I refused to accept because I was so scared but God was answering my prayers he was telling me it was all right and to have blind faith.

Jaisha had several blessings from family and friends over the course of our hospital stay and it seemed after each one she got better and better and finally a week into her coma the doctors decided they would attempt to take her out of the coma and off life support to see if she could hold her own, and you know what she did.

On the 10th day of our hospital stay another MRI was preformed and I had this strange feeling the doctors were going to come out and tell me it was a miracle all of the damage / inflammation was gone. Ok, so I was not so lucky but then again yes I was, they came back to tell me all inflammation was gone except for a small amount in her frontal lobes. I was excited and saddened at the same time.

The doctors could not tell me her long term prognosis instead they told me they have never seen a case like Jaisha's and I would tell them how she is doing.

Well that was almost 7 years ago, and I admit to this day writing that brought back a flood of emotion and made it feel like yesterday. I can still see myself and feel the same emotions I felt sitting next to her in ICU not leaving that room for anything or anyone.

Over the next several years Jaisha progressed normally meeting all of her milestones with no residual issues, she crawled, walked talked and did everything she was supposed too.

Just when I was putting it all behind me and closing that chapter of life another one opened. In July 2007 by a fluke Jaisha was diagnosed with Asperger's by a friend who is a psychologist. I was devastated at the news but decided to read up on the disorder. It hit me smack in the face, it answered so many questions. Everything I read was my daughter, I always thought she was a little bit different but I just thought she was unique and was not worried about it.

Jaisha has trouble socially, she is obsessive compulsive and is a little young for her age, yet she has a memory of an elephant.

Instead of being burdened by the diagnosis I decided to educate myself and other and become and advocate for her. I have learned I will not let Autism define who she is as an individual, instead I will embrace each characteristic and realize those are the things that make her so unique and exceptional!

I am fully committed to Autism Awareness and advocating for my sweet daughter! With that being said I am pleading for donations to her Walk Now for Autism team / Jaunt for Jaisha!

If you are able or willing to donate please follow the link below to make your tax deductible dontation. Please help me help my little girl.

Monday, August 18, 2008

First Day of School

Jaisha woke up this morning positive and ready to begin her journey into 1st grade. She was really excited to wear her new clothes and see one of the girls who was in her class last year. When I put her to bed last night I told her sweet dreams my big 1st grader and she had a huge smile on her face, I could tell she was proud.

Well, I am happy to report we survived the first day with out any issues. I did not think we would really have to deal with much but when I took her to meet the teacher on Friday she was so nervous she ate the button off her shirt. When ever she gets nervous or bored she eats her clothes I was thinking oh great this must be the preface for Monday.... but like I said we survived and all her clothes stayed intact.... Yeah! Go Jaisha, Mommy is so proud of you big girl!

Thursday, August 14, 2008


On the lighter side of things, I have noticed Jaisha laughing more and more at things she hears on television. Her giggles are music to my ears, I just beam inside when I hear her make the connection and actually get the joke she heard on TV. To outsiders this may sound like no big deal but to a parent whose child is on the spectrum this is a great step, sometimes I wish I could capture it in a jar and listen to it over and over.

The "Unknown" Meltdown

Last night while playing with Kalee and Kaiden, Jaisha had a meltdown she came up stairs saying she bumped her head (I later found out her and Kaiden bumped into each other) so I kissed her better no big deal, no bump, no blood so good to go you'd think...
Then all of the sudden she began screaming and crying almost uncontrollably she was sitting on the couch screaming into the pillows at the top of her lungs, telling me she was "just mad". I tried to hold her and comfort her but it was not working, when she finally calmed down I asked her what was wrong she said she didn't know.
I realize this was due to her bumping her head and being frustrated over the incident and the residual outcome of it actually hurting. I guess to her though she could not make the connection between the events and without this meaning to the event there remains confusion, anxiety and the upset.
I was impressed with my own patience in dealing with her and I know I need to work on teaching her how to cope after the emotion. I need to teach her the "rules of the world" per say. I need to teach her things happen and don't always go your way, you need to accept it, realize it was not done on purpose and move on.
I find this same scenario play out when ever she attempts to play any kind of sport. For example, she was trying to play T-Ball last night as well and kept getting frustrated when the T would fall over after she hit the ball. She could not figure out how to make the T stand back up, I attempted to coach her on how to set it up, but she eventually said "I just give up". I think she just becomes overwhelmed with frustration and cannot cope.
I have to say I try to stay positive and talk her through these things and I need to teach her learned optimism or her ability to see the world and all of it's moments in a positive light. I am going to start using catch phrases with her such as: that wasn't so bad, next time things will go better, it could have been worse and it's not the end of the world. Hopefully these positive optimistic phrases help her cope a little better.

Wednesday, August 13, 2008

Support Group

I would like to start a Asperger's / Autism support group, I am sure with our experiences we can help one another in similar situations. Give advice on what you have tried and have someone to lean on when things get tough.
If you know anyone who is interested please email me. Thanks

Tuesday, August 12, 2008

The Water Slide Moment

I took Jaisha swimming over the weekend at Veteran's Memorial Pool in Provo. For those of you unfamiliar with the water park they have 2 fairly good sized water slides for both adults and children.
I tried with no avail to get Jaisha on that slide, I bribed her, I begged her, I attempted to reason with her and could not win.
I know deep down if I could just get her to try it once she would love it, but I obviously can't force her up the stairs kicking and screaming which is what would have happened.
It reminded me of the horse riding program where once she finally took the initial step it has been great.
Anyone have any suggestions? Please comment or email me on what you do in similar situations.

Walk Now for Autism

Last year I had the great privledge working with a wonderful group of people and serving as the Logistics Chairperson for Utah's first Walk Now for Autism!
It was an amazing event, collectively we raised over $300 thousand for autism research and brought some major awareness to Utah!
Before I go on I want to thank the following people who served on the Logisitics Committee; for without them I could not have done it.
So a BIG thank you too:
Rollin & Pam Cook
Mike & Cheri Milne
Carl & Marie Osterman
Pam Lofgreen
Kade Farrell
Mark and Carli for the photos
Brady Johnston
Amanda Johnson
Christy Giles
Alpine Garrison

I am sure there are a lot more I may have forgot but these people worked SO hard on the Logistics committee and I am looking forward to working with them again in 2009!

I would also like to thank everyone who supported Jaunt for Jaisha by donating and walking the day of the event! As well as Non-Stop Sports and Certified Shred for the shirts.

The walk was simply amazing it was held at Cottonwood High, I don't think anyone was prepared for what happened that day. There were well over 5000 people in attendance, it was very energetic and full of different emotions for everyone! At the end of the day I have to say all the hard work was well worth it!

We are starting to plan the Walk Now for Autism 2009 I know next year will be an even bigger success. If anyone is interested in participating in anyway please let me know we would love to have you!!!

Check out our site for more information: http://www.walknowforautism.org

Monday, August 11, 2008

Courage Reins

Jaisha attends a therapeutic horse riding program called Courage Reins. It is located in Highland Utah you can look them up on the web at http://www.couragereins.org/ it is an amazing program for kids with and without disabilities. They are a 501C not for profit program - Their mission is as follows: Our mission at Courage Reins is to improve the quality of life for people with disabilities. Through therapeutic horseback riding and other equine based activities, we provide a safe, fun, and challenging setting for physical, cognitive, social, and emotional growth.
As many of you know (probably from experience) it is difficult to get children with Autism to try new things so I thought I would put her in this program in an attempt to work on the issue. I have to say I was ready to give up the first day after trying to get her to put the helmet on for nearly 30 minutes. Then the great Staff there took over and gave her two choices, either she could put it on herself or the teacher was going to do it for her.

Well needless to say, she put the helmet on herself and the rest is history. She got on the horse and the rest seemed to come natural to her.

Now she puts on the helmet and gets on the horse with confidence. Way to go Jaisha I am so proud of you!!!!!!