(click on links for further info)

 
• Hypoxic-Ischemic Encephalopathy: 

Details of Asphyxia and Hypoxic-Ischemic Encephalopathy
eMedicine article - Hypoxic-Ischemic Encephalopathy
eMedicine article - Hypoxic-ischemic Brain Injury In Newborn


• Cerebral Palsy:
 
Cerebral Palsy Info
What Is Cerebral Palsy?
Cerebral Palsy FYI
Cerebral Palsy Information Central


• Multicystic Encephalomalacia:
 
Defenition
Multicystic encephalomalacia - scans


• Cortical Visual Impairment:
 
What is CVI?
Cortical Visual Impairment - fact sheet
Neurological Visual Impairment
Cortical Blindness Information
Canadian National Institute for the Blind (CNIB)


• Gastric Reflux:
 
What is gastroesophageal reflux (GER)?
Gastroesophageal Reflux Disease (GERD)
Gastric reflux
Gastroesophageal Reflux


• G-Tube
  

 
• Epilepsy:
 
Epilepsy Ontario (lots of helpful info)
Learning about Epilepsy
Short course in Epilepsy
 
• Microcephaly:
 
NINDS Microcephaly Information Page
Microcephaly Definition
 
• The Brain:

How the Brain Works

CP Care notebook - a great resource for parents to keep track of their child's routine, medications, contacts, etc.

David Ring Ministries - David Ring's personal struggle and victory over the staggering physical challenges of cerebral palsy provide a powerful, inspiring, and riveting story...

Team Hoyt - inspirational father and son marathon team.  Dick Hoyt, and his son Rick (who has CP and is confined to a wheelchair) have participated in hundreds of  marathon's including every Boston Marathon since 1981.  They have even participated in the grueling Ironman Triathlon.  The Hoyt's prove that dreams can live on and disabilities don't have to stand in the way of achieving these dreams.

Tools for Parents of Children with Special Needs - a web site with helpful advice and resources for parents of  children with special needs.

Profound Disability: Thoughts on Loving a Helpless Child - an insghtful article from an adoptive mother of twenty-six children, including children with a wide variety of disabilities.

Online medical dictionary - helpful for understanding medical reports

Adaptive Mall - special needs equipment online retailer.

Book Recommendations:
    (click on the title to be taken to a link for more info about the book)  

Aidan's Way - Sam Crane was unprepared to be the father of Aidan, a boy who would never walk, talk or see. Aidan’s Way is an endlessly inspiring account of parental love and devotion, of the lessons of ancient eastern philosophy and of what it means, ultimately, to be human.  A very interesting and insightful book.

It's Only a Mountain -In Dick Hoyt's world the only difference between and hill and mountain is something called attitude, and along with their courage and determination, the Hoyt family has conquered many mountains the past forty years, literally and figuratively.  They were devastated when their first son was born with cerebral palsy, a non-vocal quadriplegic but the accepted the challenge.  Rather than put Rick in and institution and forget him - as was suggested by the doctors - they gave him a life unlike any other.  ESPN, ABC, and NBC brought national attention to Team Hoyt when they conquered the Ironman Hawaii and again they traversed the Rocky Mountains on a bicycle.  Dick a novice swimmer tethers himself to a rubber dinghy and tows his adult son 2.4 miles in the Pacific Ocean.  He straps Rick to a seat on the front of a custom built bicycle and pedals 112 miles.  Together they then complete the Ironman events by running a marathon 25.2 miles, with Rick seated in a running chair.  'These are tremendous accomplishments, of course, but they represent only couple of the rungs in Team Hoyt's inspirational ladder.  If you are expecting a simple sports biography, or only a story about a man competing in triathlons and marathons, you are in for a pleasant surprise.  That is not what you will din between the covers of this book.  Instead, prepare for and emotional saga about the tremendous accomplishments of a handicapped person surrounded by a family motivated by love for one another and for humanity in general!

The Power of the Powerless: A Brother's Legacy of Love - Oliver . . . the author's brother who lay in the same bed for 33 years, unable to see, walk, communicate, or feed himself. The child who outlived two of the doctors who said he would not live beyond the age of eight. The immobile child who touched the lives of hundreds and taught them the true meaning of courage and perseverance. The Power of the Powerless is a doorway into the deep lessons of life, love, and faith Christopher de Vinck learned from his brother Oliver. It is a moving testimony to the power God demonstrates in the weakest vessels. It poignantly affirms the immeasurable worth of every person. And it attests powerfully to God's triumphant grace, which transformed adversity into an altar of love and bound a family together in a household of joy.

Just As I Am: The Life of David Ring - For eighteen minutes after his delivery David Ring's brain was deprived of oxygen, resulting in cerebral palsy and a life of withered expectations and dismal hopes. Here is the true story of how God uses what the world discards.

One Tattered Angel : A Touching True Story of the Power of Love - This is a true story of a little girl, Charity Yorgason, who was born without a brain, and the impact she had on the family who adopted her. The Yorgason's were told that she would never experience emotions, never smile, never love, and would not live past two years. They first took her in their home as a foster child, and were ultimately able to adopt her. She was a hydrocephalic who endured many operations, always surprising even the doctors with her ability to bounce back. But the real story is the story of her ability to love everyone without ever saying a word. Through her smile and her eyes she radiated a love that would touch your soul. This story takes you through the almost 8 years of her all too short life, sharing her experiences, her pain, and the lessons of love that she taught through her smile and her eyes. It is impressive to see, through the eyes of her father, what an impact Charity had on everyone she met, and especially on her adopted family. It was amazing to read of the intense pain she experienced, yet still she seemed to choose to live. This book will make you laugh and cry. It will touch your soul, and renew your faith.

Conversations With The Voiceless: Finding  God's Love In Life's Hardest Questions - John Wessells spends his days praying and singing worship songs for head trauma patients in comas, something he admits may seem frivolous. He makes the case that these people and their families are among "the least of these" for whom Jesus cares deeply. And his stories are powerful. He talks about a young man who made a decision to follow Christ while in a comatose state. He tells of sharing his faith with Christine Busalacchi before her father got permission to remove her feeding tube and she starved to death—how the girl neurologists described as being "in a persistent vegetative state" had waved to him, smiled and responded to praise music. But more importantly, Wessells discusses the difficult questions that a ministry like his uncovers. Why are some lives cut short? Why do some patients recover, while others' bodies shrivel as their minds slowly lose control? Wessells reassures readers that it's okay to ask questions and not have answers—and that, no matter what, God's love abounds. These are lessons he learned not only through his ministry but also through the loss of his young son to cancer. This is a rare book that offers hope and comfort without ignoring or sugarcoating the painful realities that families of head trauma patients face.

Reflections from a Different Journey : What Adults with Disabilities Wish All Parents Knew - Offers parents of children with disabilities inspiration and advice from those who've been there.  Reflections from a Different Journey presents 40 stories by successful adults who grew up with disabilities. They provide insights into what it is like to persevere in the face of community prejudices, and what it takes for families and children with disabilities to work together toward fulfillment.   While there are many books for parents on raising a child with a disability, this is the first to help them learn from people with disabilities, and to help children face the unique challenges and rewards of growing up with a disability. Reflections from a Different Journey will also encourage and inspire older children and adults with disabilities, other family members, and education and health care professionals who serve these families.

The Operator's Manual for Planet Earth: An Adventure for the Soul -  It was given to me by a lady that owns the special needs supply store we deal with for Sacha.  She was reading right around the time we first met her, and she felt the message very much spoke to her about Sacha.  It's a fictional story not so much about people with special needs, but rather, of how we all need to learn life lessons to better ourselves and to fulfill our purpose in life.  The ending, however, very much spoke to me as to why we have a child like Sacha in our life.  If you are searching for some meaning in why these things happen, I would recommend getting a copy of this book.  Although the story is a little "out there", it's message made me pause and truly reflect on the meaning of the things we are going through.

When Bad Things Happen to Good People - Rarely does a book come along that tackles a perennially difficult human issue with such clarity and intelligence. Harold Kushner, a Jewish rabbi facing his own child's fatal illness, deftly guides us through the inadequacies of the traditional answers to the problem of evil, then provides a uniquely practical and compassionate answer that has appealed to millions of readers across all religious creeds. Remarkable for its intensely relevant real-life examples and its fluid prose, this book cannot go unread by anyone who has ever been troubled by the question, "Why me?"

In This Together: The Journey Of a Mother and Child - Being the parent of a child with special needs is a powerful experience and an awesome responsibility. It can bend you or break you, but either way, it will change you.  It becomes a journey that you embark upon with your child. In the beginning, you will learn the true depths of your emotions; in the middle, when you think that your reserve of strength has been depleted, you will learn that you can draw strength from your child; as the journey continues, no matter the amount of your child's limitations, you will learn that your child is the teacher and that you are the student. The lessons are sometimes subtle but are always profound. When the tragedy could have been prevented, it adds a whole other dimension to the trip.

Angel Unaware -  Written in a poignant, tender style, Angel Unaware is the compassionate story of Down's Syndrome child, Robin Elizabeth Rogers, daughter of Roy and Dale Evans Rogers. A timeless message of hope and faith for parents of Down's Syndrome children, as well as for those with other illnesses, this enduring classic has sold more than 500,000 copies since its first publication in 1953.

Uncommon Fathers: Reflections on Raising a Child With a Disability - a series of short essays written by several fathers on their experience of raising a disabled child.

Healing the Child: A Mother's Story: An Inspirational & Practical Guide for Parents When Kids Are Sick
After four-year-old Alex Cain was stricken with a deadly bacterial infection, his survival was in doubt for several days. His mother has written this book to tell the story of the family's healing journey with Alex. In a very readable manner, it provides large doses of both inspiration and practical guidance to families with very sick children. While the parent of a sick child may not have the time or the energy to read this book from cover to cover, the table of contents highlights items of interest, e.g., financial considerations. Several chapters outline specific steps for parents to take regarding their child's care. The appendix provides a number of resources, including some Internet addresses, for disease-specific groups. While the biggest audience for this book will probably be the well-educated lay reader, those involved with parents of very ill children, e.g., chaplains and hospital social workers, will also find this a useful tool.
   

Children's Book Recommendations:
    (click on the title to be taken to a link on amazon for more info about the book)
 
Guess How Much I Love You (by Sam McBratney) - This is a wonderful story about a parent's love for their child, that we had bought for Sacha the very day we were told he was not likely to survive.  We had, in fact, just returned from the book store with it, when the doctors gave us the dreadful news.  This story means allot to us, as we read it to Sacha every day while he was in intensive care.  It was also one of the first things we did when he miraculously woke from his comatose state on Christmas night.  We were overjoyed to be reading this story to our son who was now awake, rather than reading it at the funeral services we were envisioning.  This story will forever have a special place in our hearts....  " I love you right up to the moon - and back."

The Crippled Lamb - ...quickly becoming a new Christmas classic for children, it tells the story of the birth of Christ through the eyes of Joshua, a little lamb. Joshua is disabled and therefore unable to graze in the fields since he cannot keep up with the others. He has to stay behind with his friend, Abigail the cow who tries to cheer him up by telling him "God has a special place for those who feel left out." Joshua has the opportunity to be part of God's plan when Jesus is born. Mary and Joseph do not have a blanket and Joshua sits next too the child to offer him warmth and be a blanket for the Christ child.

The Legend of the Three Trees - A classic story for all children about three trees. "As each tree grew, it dreamed of what it would become." The olive tree dreamed of being a ornated treasure chest to "hold the greatest treasure in the world." When it was made into a lowly feed box, it  knew it would never hold a treasure. The oak tree wanted to be made into a mighty ship that would carry a king! Yet it became a little fishing boat. So the oak knew too his dream would never come true. And finally the pine sitting high on the mountain desired to point people to God. But one night a fierce storm came and lightning splintered its trunk and as it came crashing down, so too its dreams. How could it point people to God now? Never.  It was made into a piece of scrap wood. As the saying goes, "Never say never." Believe and Wait... in the end each held the greatest treasure, the mightiest king and all point people to God. "If we follow God's path, we will travel far beyond even our greatest dreams."

I Love You Just the Same - Little Bear's mother is always there to show him what he needs to learn-how to chew crunchy grass, catch swishing fish, and dig deep for roots. But Little Bear is still small, and he can't do all of these big- bear things just yet. What is a little bear to do? Watch, and grow, and try his best. And no matter what, know that he will always be loved just the same.

You Are Special - The main character, Punchinello, lives in a world where the wooden people wear "stickers" which are Stars or Grey Dots, depending on what others think of you! Poor Punchinello tries hard to gain others' approval, but keeps missing out and keeps getting grey dots, which means that he is definitely looked down upon in this make-believe society of wooden people.  Finally, our friend meets a wooden girl who has no stickers! When people try to put stars on her, they don't stick! And the grey dots don't stick either! She explains to our main character that this is because she goes to visit Eli, the master woodcarver, who made them all. She doesn't care about the opinions of others. She suggests that Punchinello go visit Eli as well.  When Punchinello goes to visit Eli, he learns an important lesson about the specialness of each created person just because you belong to God!

Zoom - Lauretta's mother takes her to buy a new wheelchair, but Lauretta isn't satisfied with a regular 5-speed or 10-speed model. No, she insists on the 92-speed, silver and gold, dirt bike wheelchair! When she gets a speeding ticket during a one-day tryout, her parents insist that the wheelchair be returned to the store...until Lauretta's older brother has an accident and only one person can whisk him to the hospital on time--Lauretta, in her amazing wheelchair!

I Love You Forever - The mother sings to her sleeping baby: "I'll love you forever / I'll love you for always / As long as I'm living / My baby you'll be." She still sings the same song when her baby has turned into a fractious 2-year-old, a slovenly 9-year-old, and then a raucous teen. So far so ordinary--but this is one persistent lady. When her son grows up and leaves home, she takes to driving across town with a ladder on the car roof, climbing through her grown son's window, and rocking the sleeping man in the same way. Then, inevitably, the day comes when she's too old and sick to hold him, and the roles are at last reversed.

Goodnnight My Angel: A Lullabye - based on Billy Joel's beautiful song.  The Grammy and Tony Award-winning singer/songwriter expresses the deep bond between a parent and child through his song "Lullabye (Goodnight, My Angel)," now adapted as a beautiful picture book. Includes a CD with Joel's recording of his song.

Dear Santa, Please Come to the 19th Floor - Ever since the accident, Carlos just isn't the same. He no longer gazes into the night sky, dreaming about becoming a basketball star. He doesn't even practice anymore, now that he's in a wheelchair. But Christmas is coming, and Carlos' best friend, Willy, knows that if there is ever a time to cheer Carlos up, it's now. And what better to lift his spirits than a visit from Santa Claus himself! The trouble is, Santa has never come to the rough neighborhood where the boys live. Even if he did, how would he get up to the nineteenth floor, with no chimneys and a locked lobby door? But Willy believes Santa will make it . . . somehow.

Just Like You - One day at preschool, Elmo discovers that he has a new classmate–Lizzie. Elmo can’t stop staring because she’s in a wheelchair. But Elmo finds out that except for her disability, the two of them have more in common than not. Lizzie has a puppy, she loves ice cream, and she loves to play basketball. As Elmo and his classmates come to know Lizzie, they learn that people with disabilities can live full lives and have skills and strengths that are just like their own.

The Christmas Miracle of Jonathan Toomey - a charming book about the nature of patience and grace. Jonathan Toomey is a very sad and gloomy man. His wife and child died very young and he has never gotten over his grief. Children call him Mr. Gloomy, for they fail to see the beauty beneath. One day a young widow and her son show up, asking Toomey to make a nativity scence for them, replacing one they lost when they recently moved to town. Mr. Toomey agrees. His life is forever changed by the act.
 
Littlest Angel - the classic story of a small angel who simply can't get with the program no matter how hard he tries until an understanding elder realizes that he is homesick and is able to retrieve a box of his most treasured possessions from "back home." When it comes time for Jesus to be born on Earth, the Littlest Angel gives his precious box to the Baby, but he is worried that God will think his gift too humble. However, God is pleased indeed, and transforms into something very special.
 

DVD Recommendations:
    (click on the title to be taken to a link  for more info about the DVD)
 
Door to Door - Door to door is the story of Bill Porter who has Cerebral Palsy. This movie portrays Bills struggle in being accepted into the norms of society and being able to excercise his right to live a normal life. Bill Porter struggles to get a Job as a Door to Door salesman but with Patience and Persistence he gets his position. He takes the worst route ever, and encounters many problems along the way. Bill truly showed patience as he never let the doors slamming in his face or the lady with the stains on her couch bring down his esteem. Bills mother was a very strong character as well, we see how she drills patience and persistence into Bill's head. Later on after being diagnosed with Alzheimers Bill mother is faced with her own stereotypical images as well. A realistic and well done film, an emotional story of one mans fight to be valued by those in the community.  

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