Shane's Notebook

Nathaniel @ CCNS!

Amber — Tue, 08 Mar 2011 03:20:02 +0000

Nathaniel is now attending The Children’s Center for Neurodevelopmental Studies. I could not be happier. http://www.thechildrenscenteraz.org/

The school still needs financial support. I have not given up on my committment to support them or my son. So, in the coming months, look for another event or fundraising opportunity to help this worthwhile school.

THANK YOU FOR YOUR SUPPORT!

Don’t forget to read “About the Notebook” page link above.

EVENT CANCELED

Amber — Sat, 23 Oct 2010 03:51:00 +0000

It is with a heavy sigh that I write this post.

I am forced to cancel the “Autism Awareness from A Different Pointe of View” event originally scheduled for September 17th, but rescheduled to November 5th.

This is due to a lack of funding and committed ticket purchases.

Refunds for the few purchases that were made have been issued as of 10/22/10.

Any questions or concerns, please email me at info@shanesnotebook.org.

Many apologies to all that this has inconvenienced, particularly the Grupo Liberdade band and the CapoeiraBrasilAZ/SambAZ dancers, as well as the Children’s Center for Neurodevelopmental Studies.

Sincerely,
Amber Medrano

Autism Awareness Fundraiser

Amber — Sun, 01 Aug 2010 22:30:49 +0000

Autism Awareness from A Different Pointe of View

Getting ready for the BIG Event

Amber — Sat, 31 Jul 2010 21:47:05 +0000

SambAZ and Grupo Liberdade

Many thanks to Porangui and Borboleta (Angelique) for everything they are doing to make this event a great success! Also pictured – and thanks to – here are the ladies of SambAZ: Crystal, Claudia, Emilie, and Cathy. Special Thanks to Steve our photographer for this photo shoot.

How I came up with the fundraiser event…

Amber — Wed, 21 Jul 2010 07:11:10 +0000

I saw this group of Samba dancers in costume at Phoenix First Friday – which is an art walk in downtown Phoenix on the first Friday night of every month. The SambAZ girls were dressed in those gorgeous costumes and they were handing out flyers. I pressed through the passing crowd and grabbed a flyer from one of the girls wearing a dazzling aqua blue. I glanced down at the flyer and realized they would be performing in two weeks. I mentally made a note to arrange my schedule to attend.

I attended their Carnaval Brasil event in Tempe on March 13th of this year. The show was so amazing, so full of energy – it was electric! I knew I had to figure out a way to feature them at a fundraising event.

Nathaniel and SambAZ dancers

So, while I was trying to scheme, Nathaniel’s ESY program was ending and the Department of Developmental Disabilities decides to cut his habilitation/respite hours among other things. In addition, my son’s Autism resource room teacher is leaving the school district and I am left with big holes in my support network! I realized that I needed to start laying foundations for programs and services for Nathaniel – and that if his services are being cut, other kids are experiencing the same problem.

What I like about working with this group, is that Angelique and Porangui really have a heart to teach and pass on their art. They also love to work with kids. I am excited to develop a music and dance therapy program with these wonderful, dynamic people!

http://www.porangui.com/__start_..html
http://www.capoeiraarizona.com/

I am also very encouraged to establish a relatioship with Kent and the fine people over at the Children’s Center for Neurodevelopmental Studies.

Hope to see you there…
Amber xoxo

Welcome to Shane’s Notebook

Amber — Wed, 21 Jul 2010 00:39:10 +0000

Shanesnotebook.org is soon to be a non-profit entity that will create scholarships and grants for autistic student programs, such as music and dance therapy.

The ultimate goal is to establish this site as a portal for support to families facing the challenges of nurturing a developmentally delayed or chronic care child. This includes educating parents on how to advocate for their child’s special needs.

Eating a cookie. January 2003

In addition to honoring Shane’s memory , the organization will create awareness for developmentally delayed children by fundraising for scholarships & grants to benefit autistic student therapies and supplemental school programs. And finally, Shane’s Notebook will begin to gather home care supplies and equipment to distribute to medically ill children.

Nathaniel can spell!

Amber — Tue, 20 Jul 2010 00:07:12 +0000

Augmentive Communication Technology @ Home

Nathaniel has had the benefit of having tech savvy parents, and a few good Autism resource school teachers, unafraid to turn him loose on a computer. To date, he still loves surfing PBSkids.org and his personal YouTube channel, unassisted. I am so proud of him. His Autistic cousin, Trinity also loves to logon to Google and do web searches all day for her favorite television shows, like PowerPuff Girls.

Up until last Sunday, however, I was not sure how his reading was progressing. It is so difficult to know what skills are developing and what information is being retained because he cannot talk to you. Without his voluntary speech, there is no expression of the learning…until you pay attention to what he does. He types!

Nathaniel spells "disneypixar" and "nickelodeon" on his Dynavox.

This is the Dynavox. A very expensive Augmentive Communication Device. Although I believe an Apple iPad would do the job better. Below, you will see Sophia. She is Nathaniel’s little sister. While she is not affected by Autism or other learning disorders, she enjoys playing with PECS symbols – a primary communication tool for the majority of Autistic children. Visual recognition of shapes, patterns and images is the foundation of cognitive [language] development.

Sophie plays with Nathaniel's picture symbol library.

Technology in the Classroom

Amber — Sun, 23 May 2010 00:11:48 +0000

I saw the coolest thing in my son’s autism resource classroom today. His teacher had a YouTube video of a dance routine playing so all the kids could imitate and follow along. She had it projected onto the whiteboard using a laptop and video projector. It was “The Cupid Shuffle”. It was so neat to see all the kids do the steps! I grabbed Nathaniel’s hand and did it with him once. The teacher kept it on a loop until she decided to change videos. She tried to do a search of the “cha cha slide”, but was not able to bring it up. Apparently, she lost her internet connection and the fun was over for the afternoon… (I think one of the kids stepped on the network cable ). In any case, it was great to see technology being used this way in the classroom.

A Mom’s Perspective

Amber — Fri, 07 May 2010 21:32:11 +0000

In writing this, it sounds like it’s all about me, but it’s not. I acknowledge that it is only my limited perspective. At this moment, however, that’s all I have to give. Please excuse the “mom-centric” speak of the following.

My life has been changed in many profound ways through my children. The changes they brought allowed me to participate in and observe many facets of the human existence – everything from joy, hope, and wonder at their sudden entrance to pain, desperation, and anger at their slow and suffering twilight. These extremes of the change spectrum made me who I am today – for better, and for worse, as exemplified by the choices I have made. Yet, for the better, I have experienced all the aspects of raising a child, attending to their special needs, and strenuously advocating for their survival, care, and basic rights.