Welcome to everyone!

I want to thank you for starting this site. I sit here and just cry. A place to come where everyone will understand what I am talking about, without rolling their eyes or telling me I am over protective. I have a yahoo group I started, but it is small and not very active. I am the blessed mom of 4 sons. Two of which were born with severe and rare birth defects as well as many other chronic illnesses. Sean will 9yrs old in April and was born with VACTERLS association, which is a huge master list of birth defects...you will need to google it to understand what I am talking about. One of the birth defects Sean has from this list is TE, it means he was born without his esophagus and his stomach was attached to his trachea. He had an esophagus made from his tissues as well as bringing his stomach up so he could swallow. At 5yrs old, the tissue died, and a section of his colon was put for his esophagus. A very dangerous and risky surgery with a very difficult recovery where many other health issues were discovered. Sean has chronic lung disease, asthma, GERD, Dysautonomia, Cyclic Vomiting syndrome(CVS), stressed induced diabetes, small for his age, FTT. He is fed via a jtube at night and eats a bit orally during the day. He is one of the most spiritual children I have ever met and though his OCD can drive us up the wall, he is an incredible child for his age. Those who meet Sean, go away changed. Daniel is 7yrs old and two years ago we found out he was born with Arnold Chiari Malformation and syringomyelia. He had to have emergency brain surgery to decompress his cerebellum and brainstem. He had stopped walking and could barely function. He lost bladder control and has nerve damage in his whole body. He suffers daily from headaches, but can run and do just most things boys his age do. He can never play sports though as he is missing the back part of his skull. They had to remove this as part of the decompression. He is so very sweet and tender. out of all my boys, he is our 'mother hen'. He is always taking care of others and the peacemaker. I home school my boys because our school district failed them in providing an education. Sean is very smart if given the right things. Our SD said he was uneducatable. so sad. He is reading and doing all things near or beyond grade level. Sean's health changes so quickly and without much warning. I know the signs and I would not put anyone in charge of Sean. So I am his Den Leader for Cub Scouts and I will be for a long time. My husband will be his Scout leader when he is older. Our Bishop, who his one of his Doctors, tells me I am over protective. I have 3 other sons to care for. When Sean is in the hospital, it affects everyone and I can't do everything. I can keep him healthy and keep normal in our home. What normal is to others is not our Normal. Sean has had 17 surgeries and countless hospital stays. He sees 18 different Doctors, nurses and medical personnel, ie speech therapist, OT. Thanks! Shelly Rawlins

I was looking for information on a book that was recommended to me on Autism and happened on this site. I am very excited to see that this exists!

My husband and I did a presentation in our ward a few years ago, which we were then asked to present to the stake, directerd at raising the awareness and understanding of "non-disabled" members towards the world of disabilities of all types (physical, mental, emotion, etc). We began to prepare a program on the stake level which would have had reps in each ward trained to offer support to leaders, teachers and others so that interactions between members with and without disabilities might be more beneficial to both parties. A change in leadership put the program on hold.

I live in Kent, Washington and am the mother of seven children and my youngest (a son who just turned 9 yrs old in Dec) was born with Down syndrome. I went back to school when he entered school to become a COTA (Certified Occupational Therapy Assistant). I now work part-time while he is in school with children ages 0-21 with all types of developmental delays and disabilities both in their homes and at a center. I love what I do.

I am currently serving as a Primary worker in our ward with a special assignment to help integrated the children with special needs into Primary. I currently work with a 5 year old with Autism and working to activate a family who has a son with DS.

Vickie

I would like to publically thank Christopher for all of the time and skill that he has provided in setting up this website. I enjoy searching it from time to time and have told others about it.
About myself: I am fourth of five children raised to a wonderful set of parents. My father, an Air Force Fighter Pilot, had a profession that required that we move alot during my childhood. I spent my teenage years in Kaysville, Utah and graduated from Davis High School many years ago.
I am married to the lovely Jada Schneider from Hooper, Utah and we are the parents of three children. Jennica, our oldest, has Cri-du-chat syndrome or 5p-minus syndrome as it is sometimes referred too. Her fifth chromosome has a deletion of the right upper arm of that chromosome. As a result, Jennica is profoundly challenged. She cannot speak, but does use some signs and gestures. She functions as a toddler even though she is 21 years of age. She is a delightful person, with a happy, loving personality. She also has driven us to frustration with her constant, repetitive behaviors. We love her very much.
Our other two children are in High School and they love their sister very much as well.
I am employed by the Church Educational System as an Institute Instructor in Rexburg, Idaho, and I also serve as an advisor to the CES area on adaptive needs programs.
I look forward to learning more about adaptive needs. Currently I possess empathy for those with physical, mental, and other challenges. I just want to learn more so I can assist with challenged individuals and there families.

Scott D. Steed