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.
http://www.walknowforautism.org/utah/jauntforjaisha


Wednesday, April 22, 2009

Thursday, March 12, 2009

Picture charts / Story boards

When your child forgets to flush the toilet or wash their hands does it frustrate you? Can your child not talk and you find it hard to figure out what they want? Well I might have found an answer for you:

I stumbled onto this great website where you can download picture charts for your children. It does not matter if your autistic child is verbal or non-verbal these charts are amazing. I was looking for a bathroom chart for Jaisha and found several great examples.

The best part is you can down load them for free, print and use them as you please.

Check out the site:

http://www.setbc.org/pictureset/

Wednesday, March 11, 2009

Asperger's Huh?


I recently purchased: Asperger's Huh? - A child's perspective by Rosina G. Schnurr, Ph.D.

After reading several reviews on Amazon.com I found this book to be quite insightful. It is recommended for ages 4-8 it is only 52 pages each easy to read and easy for your child to understand.

You read this book with your child and it help them to understand why they may be a little bit "different". However, it validates all of their feelings and normal and gives them strategies for overcoming some of their issues with Asperger's.

Chapter titles:
*The Mystery
*Another Doctor
*The Funny Thing About Friends
*Social Sillies
*The Weather Weebie
*Sports & Klutzes
*Am I Smart or What?
*Anxiety Busters
*Little Things, Big Things
*You and Who Else?
*So What's Important?
*Asperger's Huh?

I have to admit I lauged several times because the author related to me and my dealings with Jaisha. This book also gave me several strategies to help Jaisha understand social situations and dealing with emotions when you don't get what you want.

I give this book a 2 thumbs up if you want to have simple and practical insight into your child's view on the world.

I purchased this book on http://www.amazon.com/








Thursday, March 5, 2009

2008 - 2009 Walk Now for Autism


I am currently serving as the Logistics Chairperson for Utah's Walk Now for Autism event. I am amazed at what my wonderful team accomplished last year. With that being said I need to thanks Mike & Cheri Milne, Amanda Johnson, Kade Farrell, Mark Johnson, Carli Canta, Pam & Rollin Cook as well as many others whom were members of my daughters walk team.
I am fully committed to bringing Autism Awareness to Utah and to giving our children as well as the children of the future the best opportunity to succeed in life.
I am always looking for volunteers for this event as well as other committee members, if you are at all interested please contact me at sross@slco.org I would love to have you become part of our team to fight and advocate for our children!
We are an enthusiatic group of mothers, fathers, grandparents, brothers, sisters, cousins and friends who are determined to make a difference in the lives of our loved ones.
If YOU want to make an impact on the world, it is your time to help. Your presence and enthusiasm can change the life of a child.
Please check out our website for more information or email me directly.


Jaisha prouding displaying her Jaunt for Jaisha walk shirt. She felt like a true princess that day and I cannot wait to experience it again this year!

Please Help Me Help My Daughter

Utah's 2nd Annual Walk Now For Autism
May 2, 2009 at Utah Valley University in Orem

http://www.walknowforautism.org/utah/jauntforjaisha

I am asking for donations for my daughters Walk Team - Jaunt for Jaisha!

“Never doubt that a small group of dedicated people could change the world. Indeed, it is the only thing that ever has.” – Margaret MeadWe, by the sheer force of our combined passion, commitment, and numbers will move this field forward to find effective treatments and a cure for this devastating neurological disorder called autism.

Remember no donation is too small because it all adds up! If you can please make a donation within your means it would be greatly appreciated!!! You can click on the link above to be directed to her web site directly!

Please help me help my little angel!!

Much Love
Shanda & Jaisha

Tuesday, December 30, 2008

Grandma

Well like I said in my earlier post Jaisha has had a bit of a rough time since the passing of Nana I think deep down she misses her but she does not know how to express it.

She has had a few tics and stemming behaviors lately that I think may be her way of expressing her sadness and anxiety.

I wish I could take all the pain away for her and bring her Nana back because those two were so amazing for each other.

Monday, December 29, 2008

Our latest updates

Sorry I have not blogged for quite some time. We have had a lot of family trials lately. Jaisha has a special bond with my mother whom she calls Nana, and Nana unexpecidely passed away at home on December 3, 2008. So my life has been a roller coaster of emotions. I hurt so much for Jaisha and for her loss and for her somewhat lack of understanding.

Although in the same respect I have to share with you some of the really great things she said the few days following her passing. On the evening of her passing Jaisha cried, wailed and shook not understanding and mourning. The next day I asked her if she missed Nana and she said "no, she is with her sister (whom also passed away 2 years ago).

That night while we were laying in bed she said "mom, I asked Nana what she missed the most and she said her sister, so mom I let her go" that send chills throughout my body. My mom was diagnosed with polio at a young age and had many struggles with her physical body throughout her life and my step dad said one of the only things keeping mom on this earth was Jaisha. So I guess Jaisha gave her permission in their own way to pass to heaven.

A couple of days later she said "mom Nana came and got me and took me to where she lived with her sister when she was little" I tried to question her further because my mom has not driven for years and she replied "mom you don't understand she just came and got me".

I have to believe and truly want to believe that the veil is thin for our youngsters who are so special and this has helped Jaisha heal as well as many of our other family members.

The funeral was special Jaisha spoke on her special relationship with her Nana and I was very proud of her, then at the cemetery we all released blue balloons to heaven since blue was Nana's favorite color.

I told Jaisha when ever she misses Nana we can go and get a blue balloon and she it to heaven with our hugs and kisses.

Other than that Jaisha had eye surgery in October for the second time and life has been a tad bit crazy.

I want to thank all of you who follow this blog and email me with your support. I love you all!

Shanda

Nana's Obit.

Cynthia Pearl Pino Farrell Cynthia Pearl Pino Farrell
Cynthia Pearl Farrell was born on February 8, 1956 to Joseph Peter Pino and Theresa Southam Pino. Cindy passed away at home on Wednesday December 3, 2008.

Cindy is survived by her husband Bruce Farrell of Spanish Fork, her daughter Shanda Ross of Orem her son Kade Farrell of Kearns her granddaughter Jaisha Ross of Orem, brothers Eric and Joey Pino of Salt Lake and several nieces and nephews.

Cindy married Jack Nyman together they had Shanda, they later divorced. Cindy then met her soul mate and the love of her life Bruce they were married on February 8, 1985. Together they were blessed with a son Kade.

Cindy had an unexplainable relationship with her granddaughter Jaisha they were two peas in a pod and were one of the most important things in each others lives spending countless hours together making memories. Jaisha loved her Nana!

Cindy was most known for her ceramics and porcelain studio where she made many life long friends and had the ability to express and share her talent with many people.

Cindy was diagnosed with polio at a young age and was strong throughout her life dealing with the many effects associated with it. We as her family are happy to know she is no longer experiencing the pain of her physical body and she is reunited with her family members.

A viewing will be held on Monday December 8, 2008 from 6 - 8:00 p.m. at Walker Mortuary, 187 S. Main Street, Spanish Fork. The funeral will be held on Tuesday December 9, 2008 at 10:00 a.m. at the Canyon View Stake Center 989 South 2550 East Spanish Fork with a viewing beginning at 9:00. Burial will take place in Midway.

As a family we ask you wear something blue as it was her favorite color.