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KNOWING JESSE, A Marianne Leone Memoir.

An inspiring interview with Author, Marianne Leone about the remarkable life of her son, Jesse.

1. What was the single biggest factor that you feel made a difference in the quality of Jesse's life? I think what made Jesse enjoy his life was the fact that we recognized his hunger to learn and moved heaven and earth to make that possible. He loved words, books and poetry and we exposed him to them early in his life. Once he was included in our local public school and able to communicate and do his school work on a computer, what followed was Jesse making friends and expanding his social life. Jesse was a social kid and our house was a focal point for all kinds of gatherings that he loved. Each child is different. If Jess had been, for instance, a sports fanatic, we would have learned everything we could about how to include him in sports, take him to games, etc. Able-bodied children explore the world on their own starting as babies and toddlers who pick up and mouthed everything in sight. We must bring the world to our children.

2. What life lessons would you like to pass on to other parents who are on a similar life journey? The life lesson we learned early on was that we were Jesse’s strongest advocates. We learned that fighting for personhood for Jesse would be a lifelong endeavor.

3. How were you able to stay strong and determined in order to keep advocating for Jesse? Can you share a few tips with parents? I think it was Jesse himself who made me strong in order to keep advocating for him. It was the look of joy in his eyes when he was able to demonstrate to us that he could read or after he wrote his first poem or first experienced adapted windsurfing. Jesse would have been twenty-three this October. I think that, while the struggles to advocate continue today, at least the advent of the internet can make a parent of a disabled child feel less alone. The avalanche of information available for parents today makes me happy that they will not have to rely on a snail-mail once-a-month newsletter, like we did. And the technology has advanced considerably. We have friends, a couple with a two year old nonverbal little boy with cerebral palsy who is already using an iPad! Parent to parent groups are wonderful and can provide an important exchange of information plus emotional validation and support.

4. What can we as a small, but mighty non-profit, do to improve the system of care and ensure a life without limits for children with disabilities? The most important thing you as an organization can do is to recognize that the parent is the expert on their child. I wrote an article for Exceptional Parent when Jesse was two about my experiences in early intervention with people in official positions reducing Jesse to a kid; instead of a person, a baby who had cerebral palsy. These same people gave all sorts of advice about our marriage, for instance, that had nothing to do with Jesse’s disability. Take the cue from the parents and always proceed from the point of view that it is their precious child you are talking about and that child is an individual and not personified by only his or her disability. The second most important thing is to assist in parent’s ability to organize to push for legislation that affects their disabled children. It starts locally I can attest to this. When the local school system refused to include Jesse, I met with other parents at the local library. There were six lawsuits that year and all of our children were included after a long battle with the administration. It started in the local library and could start in your local UCP organization!

5. What would you like others to take as their life lessons when reading this book? From this book, I would like others to take as their life lessons two sayings from tee shirts Jess like to wear: 'Question Authority' and 'See the person, not the disability.'

6. How were you able to keep on the same page with your spouse and keep your marriage strong while keeping Jesse as a priority? I addressed the stresses battling with insurance companies and educators for your child can put upon a marriage in the Staying Together; chapter of my book. My husband and I have been married twenty-seven years now and I do feel blessed that he is such a caring, gentle man and was such a magnificent father to Jesse. I think you learn coping mechanisms early on when you are both struggling actors, broke, and in a business that brings a lot of rejection, disappointment and separation. This was all before we had Jesse, so we were able to draw a lot on the unofficial rules; we had established as a couple, rules that involved respecting each other as individuals. I think what helped me was to realize that I had my skills and Chris had his and it didn't help anything to demand that he suddenly acquire my skills or his. And I won't pretend that it was all easy or that we didn't snap at each other on occasion. One thing we did that was important: we had a night one night a week even when we were so broke. On the date we had a rule not to discuss the trials and stresses involving fighting for Jesse's needs. But we were bonded by our unconditional love for Jesse and we were lucky that we agreed on how to raise him and what was important in our lives. The separations were hard in Jesse's first two years I think Chris was gone at least six months at a time working in other states. And we were broke until he was around seven. After that, it got a lot easier and I think money, the lack of it, is a major stress for parents of disabled children. Everything costs a fortune and your’s on the phone day and night fighting with insurance companies and always feeling like your are not doing enough for your kid in the way of therapies. It's a terrible strain. But the ultimate goal was always Jesse's welfare, and in that we were united.

7. What lessons do you think Jesse taught others including his teachers, caregivers and therapists? In my book I talk about the letters we received from Jesse’s teachers after he died. They said he had taught them about love and trust, and to enjoy each day, that he inspired them to live up to the level he set for himself, and that he had given more to them than they could ever give back in return.

Knowing Jesse A Mother's Story of Grief, Grace, and Everyday Bliss By: Marianne Leone

Publication date: September 7, 2010.

To purchase this book please call Shawn at 949-333-6440

A portion of the proceeds will benefit UCP-OC

BLUE SKY JULY, By Nia Wyn

"It's the strangest time--a birth--for life to start falling apart.”

Set between the summers of 1998 and 2005 in Cardiff, Wales, Blue Sky July follows the story of Nia Wyn, a mother who battles against impossible odds to heal her son after he suffers a brain injury and is diagnosed with severe cerebral palsy. Told by doctors that her son would never walk, talk, see or even recognize her, Wyn devotes her every waking moment to exploring alternative treatments in the hopes of achieving even the smallest of breakthroughs. Through her intimate day-to-day interactions with her son and partner, Wyn explores the impact of the tragedy on her thoughts and feelings as this most extraordinary relationship unfolds into one of the most uplifting and poignant memoirs published this or any year.

Special Needs Resource Library

The Children's Home Society of California (CHS) Special Needs Resource Library has over 3,000 resources available to assist child care providers and parents who care for children with special needs. The library is designed to ensure that children with disabilities receive the best possible care and learning experiences. parents, child care providers and the community can check out up to five items per month from the Special Needs Resource Library. All items are available with no cost.

Resources Included:

• Books on a variety of topics including autism, cerebral palsy, Down syndrome, cultural diversity, developmental disabilities, hearing impairment, learning disabilities, ADD/ADHD, self-esteem and much more
• Videos on topics including sign language, learning disabilities, autism, ADHD and more
• Children's books and cassettes
• Curriculum ideas and activities
• Some books and materials are also available in Spanish

Library Hours and Location:

Monday - Friday: 9:00am to 3:30pm
First Wednesday of each month (by appointment): 3:30pm to 8:00pm
First Saturday of each month: 8:30am to 12:30pm

At the Children's Home Society of California
505 N. Euclid Street, Suite 100
Anaheim, CA 92801
Click here for a map

Comfort Connection Family Resource Center

Lending Library
This extensive library contains hundreds of books and videos covering a wide range of disability related issues including: autism, behavior management, cerebral palsy, Down syndrome, learning disabilities, educational advocacy, therapies, parent support, nutrition, sibling issues and much more. Books and videos are available for check-out to parents and professionals with a small deposit or they can be reviewed in our child-friendly Resource Center. Internet access is also available during our library hours, Monday through Friday, 9:00am to 4:00pm.

Resource Materials
At the Family Resource Center you will find an extensive array of resource materials beyond the collection of the Lending Library. Also, almost any request for information can be accommodated. The National Organization of Rare Disorders (NORD) database is kept on hand to provide hard-to-find information and a connection to national resources. Our staff is also adept at research and will be happy to assist parents and professionals in accessing needed information.

Videos for Rent

My Left Foot The story of Christy Brown, who was born with cerebral palsy. He learned to paint and write with his only controllable limb - his left foot.   Gaby: A True Story (1987) The life of Gaby Brimer, a girl physically handicapped, who finally gets her goals of study and triumph.