Adventures in Asperger's

Our Journey.............

2009-04-22T11:27:00.005-06:00

Picture charts / Story boards

2009-03-12T12:07:00.002-06:00

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/

Asperger's Huh?

2009-03-11T09:04:00.004-06:00

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/

http://www.amazon.com/Aspergers-Childs-Perspective-John-Strachan/dp/0968447309/ref=pd_bbs_sr_1?ie=UTF8&s=books&qid=1236784208&sr=8-1

2008 - 2009 Walk Now for Autism

2009-03-05T09:51:00.005-07:00

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.

http://www.walknowforautism.org/

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

2009-03-05T09:38:00.003-07:00

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

Grandma

2008-12-30T14:22:00.003-07:00

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.

Our latest updates

2008-12-29T10:18:00.003-07:00

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.

A Child With Autism

2008-10-15T08:19:00.000-06:00

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 .

Math

2008-09-16T19:51:00.002-06:00

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.

First Day of School

2008-08-18T16:17:00.003-06:00

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!

Giggles....

2008-08-14T09:05:00.003-06:00

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

2008-08-14T08:50:00.004-06:00

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.

Support Group

2008-08-13T10:42:00.002-06:00

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

The Water Slide Moment

2008-08-12T10:37:00.003-06:00

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

2008-08-12T08:40:00.005-06:00

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

Courage Reins

2008-08-11T14:21:00.005-06:00

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!!!!!!