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.

Tuesday, December 30, 2008


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!


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.

Wednesday, October 15, 2008

A Child With Autism

By Ellen Notbohm
(© 2005, 2008)
Some days it seems the only predictable thing about it is the unpredictability. The only consistent attribute -- the inconsistency. There is little argument on any level but that autism is baffling, even to those who spend their lives around it. The child who lives with autism may look "normal" but his behavior can be perplexing and downright difficult.Autism was once thought an "incurable" disorder, but that notion is crumbling in the face of knowledge and understanding that is increasing even as you read this. Every day, individuals with autism are showing us that they can overcome, compensate for and otherwise manage many of autism's most challenging characteristics. Equipping those around our children with simple understanding of autism's most basic elements has a tremendous impact on their ability to journey towards productive, independent adulthood.Autism is an extremely complex disorder but for purposes of this one article, we can distill its myriad characteristics into four fundamental areas: sensory processing challenges, speech/language delays and impairments, the elusive social interaction skills and whole child/self-esteem issues. And though these four elements may be common to many children, keep front-of-mind the fact that autism is a spectrum disorder: no two (or ten or twenty) children with autism will be completely alike. Every child will be at a different point on the spectrum. And, just as importantly - every parent, teacher and caregiver will be at a different point on the spectrum. Child or adult, each will have a unique set of needs.Here are ten things every child with autism wishes you knew:1. I am first and foremost a child. I have autism. I am not primarily "autistic." My autism is only one aspect of my total character. It does not define me as a person. Are you a person with thoughts, feelings and many talents, or are you just fat (overweight), myopic (wear glasses) or klutzy (uncoordinated, not good at sports)? Those may be things that I see first when I meet you, but they are not necessarily what you are all about.As an adult, you have some control over how you define yourself. If you want to single out a single characteristic, you can make that known. As a child, I am still unfolding. Neither you nor I yet know what I may be capable of. Defining me by one characteristic runs the danger of setting up an expectation that may be too low. And if I get a sense that you don't think I "can do it," my natural response will be: Why try?2. My sensory perceptions are disordered. Sensory integration may be the most difficult aspect of autism to understand, but it is arguably the most critical. It his means that the ordinary sights, sounds, smells, tastes and touches of everyday that you may not even notice can be downright painful for me. The very environment in which I have to live often seems hostile. I may appear withdrawn or belligerent to you but I am really just trying to defend myself. Here is why a "simple" trip to the grocery store may be hell for me:My hearing may be hyper-acute. Dozens of people are talking at once. The loudspeaker booms today's special. Musak whines from the sound system. Cash registers beep and cough, a coffee grinder is chugging. The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums. My brain can't filter all the input and I'm in overload!My sense of smell may be highly sensitive. The fish at the meat counter isn't quite fresh, the guy standing next to us hasn't showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, they're mopping up pickles on aisle 3 with ammonia....I can't sort it all out. I am dangerously nauseated.Because I am visually oriented (see more on this below), this may be my first sense to become overstimulated. The fluorescent light is not only too bright, it buzzes and hums. The room seems to pulsate and it hurts my eyes. The pulsating light bounces off everything and distorts what I am seeing -- the space seems to be constantly changing. There's glare from windows, too many items for me to be able to focus (I may compensate with "tunnel vision"), moving fans on the ceiling, so many bodies in constant motion. All this affects my vestibular and proprioceptive senses, and now I can't even tell where my body is in space.3. Please remember to distinguish between won't (I choose not to) and can't (I am not able to). Receptive and expressive language and vocabulary can be major challenges for me. It isn't that I don't listen to instructions. It's that I can't understand you. When you call to me from across the room, this is what I hear: "*&^%$#@, Billy. #$%..." Instead, come speak directly to me in plain words: "Please put your book in your desk, Billy. It's time to go to lunch." This tells me what you want me to do and what is going to happen next. Now it is much easier for me to comply.4. I am a concrete thinker. This means I interpret language very literally. It's very confusing for me when you say, "Hold your horses, cowboy!" when what you really mean is "Please stop running." Don't tell me something is a "piece of cake" when there is no dessert in sight and what you really mean is "this will be easy for you to do." When you say "Jamie really burned up the track," I see a kid playing with matches. Please just tell me "Jamie ran very fast."Idioms, puns, nuances, double entendres, inference, metaphors, allusions and sarcasm are lost on me.5. Please be patient with my limited vocabulary. It's hard for me to tell you what I need when I don't know the words to describe my feelings. I may be hungry, frustrated, frightened or confused but right now those words are beyond my ability to express. Be alert for body language, withdrawal, agitation or other signs that something is wrong.Or, there's a flip side to this: I may sound like a "little professor" or movie star, rattling off words or whole scripts well beyond my developmental age. These are messages I have memorized from the world around me to compensate for my language deficits because I know I am expected to respond when spoken to. They may come from books, TV, the speech of other people. It is called "echolalia." I don't necessarily understand the context or the terminology I'm using. I just know that it gets me off the hook for coming up with a reply.6. Because language is so difficult for me, I am very visually oriented. Please show me how to do something rather than just telling me. And please be prepared to show me many times. Lots of consistent repetition helps me learn.A visual schedule is extremely helpful as I move through my day. Like your PDA or day-timer, it relieves me of the stress of having to remember what comes next, makes for smooth transition between activities, helps me manage my time and meet your expectations.I won't lose the need for a visual schedule as I get older, but my "level of representation" may change. Before I can read, I need a visual schedule with photographs or simple drawings. As I get older, a combination of words and pictures may work, and later still, just words.7. Please focus and build on what I can do rather than what I can't do. Like any other human, I can't learn in an environment where I'm constantly made to feel that I'm not good enough and that I need "fixing." Trying anything new when I am almost sure to be met with criticism, however "constructive," becomes something to be avoided. Look for my strengths and you will find them. There is more than one "right" way to do most things.8. Please help me with social interactions. It may look like I don't want to play with the other kids on the playground, but sometimes it's just that I simply do not know how to start a conversation or enter a play situation. If you can encourage other children to invite me to join them at kickball or shooting baskets, it may be that I'm delighted to be included.I do best in structured play activities that have a clear beginning and end. I don't know how to "read" facial expressions, body language or the emotions of others, so I appreciate ongoing coaching in proper social responses. For example, if I laugh when Emily falls off the slide, it's not that I think it's funny. It's that I don't know the proper response. Teach me to say "Are you OK?"9. Try to identify what triggers my meltdowns. Meltdowns, blow-ups, tantrums or whatever you want to call them are even more horrid for me than they are for you. They occur because one or more of my senses has gone into overload. If you can figure out why my meltdowns occur, they can be prevented. Keep a log noting times, settings, people, activities. A pattern may emerge.Try to remember that all behavior is a form of communication. It tells you, when my words cannot, how I perceive something that is happening in my environment.Parents, keep in mind as well: persistent behavior may have an underlying medical cause. Food allergies and sensitivities, sleep disorders and gastrointestinal problems can all have profound effects on behavior.10. Love me unconditionally. Banish thoughts like, "If he would just......" and "Why can't she....." You did not fulfill every last expectation your parents had for you and you wouldn't like being constantly reminded of it. I did not choose to have autism. But remember that it is happening to me, not you. Without your support, my chances of successful, self-reliant adulthood are slim. With your support and guidance, the possibilities are broader than you might think. I promise you - I am worth it.And finally, three words: Patience. Patience. Patience. Work to view my autism as a different ability rather than a disability. Look past what you may see as limitations and see the gifts autism has given me. It may be true that I'm not good at eye contact or conversation, but have you noticed that I don't lie, cheat at games, tattle on my classmates or pass judgment on other people? Also true that I probably won't be the next Michael Jordan. But with my attention to fine detail and capacity for extraordinary focus, I might be the next Einstein. Or Mozart. Or Van Gogh.They may have had autism too.The answer to Alzheimer's, the enigma of extraterrestrial life -- what future achievements from today's children with autism, children like me, lie ahead?All that I might become won't happen without you as my foundation. Be my advocate, be my friend, and we'll see just how far I can go.Three-time ForeWord Book of the Year finalist Ellen Notbohm is author of Ten Things Every Child with Autism Wishes You Knew and three other award-winning books on autism. She is a columnist for Autism Asperger's Digest and Children's Voice and a contributor to numerous publications and websites around the world. For reprint permission, book excerpts or to explore Ellen's work, please visit www.ellennotbohm.com .

Tuesday, September 16, 2008


Sorry I have not posted for a while I was actually on vacation... well, the newest challenge we are facing is Jaisha and math she has such a hard time understanding basic match concepts such as 1+0, 1+1 and so forth it is so frustrating to watch her struggle with such simplicity.
I have been working with her memorization and hoping this helps her, she seems to understand it using manipulatives etc.... so we will see what happens over the next couple of weeks.

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!!!!!!