I am the mother of an autistic son. He is 23 yrs old. Your story Welcome To My World really hit home in my heart, I too have days of crying and asking God why me and why Kevin? As Kevin grows so does my faith in God grow for I have a son who does not speak much but a word or two at a time, not potty trained yet, that has been fun, doesn't dress or undress or say when he is in pain. I have to find it.

Some examples in my life are not knowing Kevin had a cyst that was draining and in process of healing, since it was really close to rectum I did'nt see it until one day he bent over to pick up a toy off the bathroom floor and I saw what looked like a second rectum, I start crying calling emergency took him in to find polyanidal cyst which is fine clean and healing oh my gosh how could my own child have an owie and me not know it? Feelings of guilt set in. Why didn't I look before now. I never thought to bend him over and look. These wake up calls are pay more attention to child and world pay more atttention to God. He is there for Kevin regularly. 

Kevin had to have 2 spinal surgeries at age 16 for scoleosis. Kevin walked all the way down the hall the very next morning with a smile on his face. He needed only a little pain meds for God was holding him and his pain. Kevin has the ability to make your heart melt with his smile and he has the most beautiful blue eyes you have ever seen. My story may seem like rambling. I am constantly in hurricane mode with my thoughts. Even now I wonder what he is doing. While I'm typing, thoughts of him are with me every minute of the day and night. However, I feel blessed to be able to be reminded daily of how unimportant our own desires really are. I have a son that talks to Jesus and God without being able to talk to us humans. Kevin tells me granny and grandpa are with Jesus also and dancing and saying wheeeeeeeee,

I loved the short part of your story and will love to read the book. Please hurry. Thank you for reminding me I share thoughts and feelings with other women who also want to be the very best they can be with what God has chosen for them. Thank you.

I am a preschool teacher here in Ft.Pierce Florida. I was in a classroom setting about 2 years ago. I had a new child that came into my classroom. The parents wanted this child in a setting with other children. At the time the child was not speaking nor interacting with the other children or his siblings. One day after the child was in my class for a couple of days, I noticed that the child whenever we had our circle time, he would turn completely around and not even listen to our songs, stories etc. At the time I was enrolled in a disabality class for children with special needs. After me doing several different startigies. It came to my conclusion that the child had something wrong. At the age of 3 1/2 the child should be talking but he was doing nothing. He couldn't put together a puzzle. Never the less one day after bringing it to our director's attention, we had a conference with the parents and they were in total denial. After about 2 weeks of being in school, one day the father came in and saw his child was only sitting by himself and asked me if he was always like this and to make a long story short, the next day he was tested and was diganoised with Austism. The child is now in a special needs class and is trying to talk at the age of 5 years old. Jan

God is so tremendous. I went on the Nancy Grace website to catch up with the Caylee Anthony case and another story on her page caught my eye. It said "Families fight for Rights" so I wanted to see the special report but instead I click on your link by mistake (there are no mistakes for God). I decided to read your story and it didn't take long for a knot to develop in my throat for I felt almost like I was reading my own story. The difference is that my son is not diagnosed yet. As a matter of fact he has an appointment this Tuesday for an evaluation.

Frankie is 3 years old; he's turning 4 this April. Since he was about 2 1/2 I began noticing something in the way he communicated to me that seem a bit similar to autistic children I have cared for in the past working at a daycare and at a Cerebral Palsy Center. When I mentioned it to his Pediatrician she immediately dismissed it saying give him time, boys take longer than girls, and you can't compare kids. One year later this answer still didn't satisfy me especially when his almost 2 year old sister was having conversations with me far better than he ever did. So I mentioned it again and told her to try to have a conversation with him. Then I got that "oh, I see what you mean". My biggest fear was that he would get to Kindergarten and the teachers would have no idea how to deal with him nor could they give him that individualize attention he needed.

From there she referred me to the best of the best E.N.T. for a hearing screening, CHKD Speech Therapist for a speech evaluation and a Developmental Pediatrician for a final evaluation. He passed the hearing test and the speech therapist said that he qualified for therapy and in her professional opinion basing on her 20 years experience Frankie could be Autistic but if he was, it would be on the mild end of the spectrum. So what happens? My insurance doesn't want to cover his speech therapy. They would only cover it if it was for restorative purposes; which means that he had the skills and lost them due to an accident. You can imagine how discouraged I became and like you I prayed like never before. I was ready to move to another state that would offer the services for free. Ready to turn my whole life around for him but at the same time was angry with God and questioned Him. Why would he make me move here and then make me move again totally disrupting our family life just when we were getting used to it like military families?]

Eventually I came across the right people who directed me to the public schools and they are handling it now. So you see, I am at the beginning of your story and I feel that God lead me to you to kind of pave the way, light my path and prepare me for what's to come. Thank you for sharing your story and your faith. It has touched me, strengthened me, given me hope and shown me that I am not alone! Please pray for me and my family and I will come back and update you on Frankie's progress. Be blessed...

I am the mother of 3 beautiful girls. That just happen to have 3 different disabilities. My baby is the autistic child. She was a challenge for the first 11 years. Now she is a well adjusted young woman of 20, that just doesn't happen to talk. However she no longer throws TVs through the wall or bites me or herself. She loves her music. She does miss the country area we lived in and the horses we once owned and lost. We didn't get much help in those days. Just alot of "you should to this, and you should do that" of course with each thing they told me, they never took into consideration that the other two needed special care too. My autistic angel's name is Lisa. And I could not love her more.

My middle child has Rhett Syndrome. It is in the family of autistic disorders, however much more involved physically. Sarah started out normal developing and began to have seizures at about 12 months. She progressed slowly till about 24 months and I saw her falling behing other children her age. She was first diagnosed as autistic, then some form of palsy. By three years of age the doctor was excited to tell me he believed she had Rhett Syndrome. She lost of use of her arms and at 7 started to refuse to walk. She is now 22 and just my baby doll. Wants to love all day long. She loves Elvis, the BEEGEES and Disney. She is also very spoiled rotten. At the moment she will not look at me because we went shopping and had a caregiver in. There is nothing like mom. Sarah is my heart.

My oldest is mildly disabled. She is very outgoing. She works now with the elderly at an assisted living home. She is 25, and with her mild disabilities, she has been my biggest challenge. This is not to say that the other two were not a challenge. Jennifer is affected by alcohol I drank before I knew I was pregnant. Fortunatly she is not as effected as some. Her border line IQ made it a real fight to get her services. However I am proud to say she is nearly independant. She needs help financially from time to time. Because of my financial problems with disabilities, a church helps Jennifer. She is my pride, and my joy.

I will not tell you that this life is a piece of cake. My back hurts, my knees hurt almost every part of my body hurts from time to time. I think life would have been alot easier if I would have had help from the time they were young. And if people understood what life is like with disabilities, instead of judging. I have always invited them to walk a mile in my shoes so I could go on a vacation. I have yet to have anyone accept this offer. And the judging is getting less and less. After 25 years of not really having a life of my own the powers that be understand that I am committed to my girls. And I am not going anywhere till I go to God. Which is where I find my peace. And with accepting the things I can not change, Changing the things I can, then gaining the wisdom to know the difference. Best prayer ever for mothers with special children. Because we do tend to bang our heads against the wall from time to time. Also, enjoy the help of family while they are still around. Nothing can replace family.

Well, I have to go get settled in front of the TV, my show is coming on. That just happens to be the Nancy Grace show.

Linda 
Cleveland Oh

When we got Robyn off of the top of the refrigerator in 1989, we knew then we had to seek help. She was our little escape artist. Howdy! I would like to share my condensed story because on April 28, 2009, our baby Robyn will be age 21. WOW! We have raised her and she has made it to young adult.

I can start out by saying "A SENSE OF HUMOR is much needed and I believe it is a gift from God. The first special needs project we were tasked is the appearance of Robyn at birth. Robyn appears to be white in skin color with blonde coarse hair ... Yes, she is An Albino. We are her dark-complexion African American parents who strive to keep her from sunburn. We worried that when Robyn got older, we would have to explain that she is not adopted but rather our natural child. However, THE CHALLENGE arrived when Robyn, at age 2 years, stopped babbling 'mama' and 'dada' and appeared to be deaf. The worry about what explanation we would give Robyn about being light in skin color and different from us went out the window! THE CHALLENGE became communication , comprehension, and appropriate behavior (social) – It is Special Needs in an extraordinary way.

We found that the program Early Childhood Intervention is an excellent start when parents become baffled about what is age-appropriate or what is a little unusual for their child. I would say the best description for living with Robyn is like playing the game of charades 24/7 because she is nonverbal. We had to develop methods for eating and potty training that were far beyond earning a PhD or any type of degree would warrant. We have an older daughter who is seven-years older and was diagnosed with Attention Deficit Disorder and she was for a while emotionally disturbed. She was embarrassed about her sister's inabilities to talk, play, communicate, or socialize. The funny thing about our oldest daughter is she put in an order for her baby sister, per say. One day, my oldest daughter asked me "Mom, can I have a sister?" - My response was that "We would have to ask daddy.” But my oldest daughter's next words were, "Mama, can she be white?" I laughingly told her, "Now, we really have to ask Dad about that because Mom and Dad cannot have a white child." The next Spring when Robyn was born it was a reflection of the fact that God has a good sense of humor.

I share my story because I had to shed a lot of blood, sweat, and tears to get a day care program for Robyn. We started out in the military child care and thought it was a secure environment for me to continue to work, but Robyn's behavior caused me to receive what was felt as a hassle from the day care everyday because they did not know what to do with her or for her. When Robyn's diagnosis was made official at age 3, every professional kept telling us that we needed to go on as normal – if I am a working parent then I was to continue working. This was not possible with autism being so new. Twenty years ago, the Mental Health and Mental Retardation agencies did not have the knowledge of what to do and only offered one hour of Nurse Respite rather than the 8 hours of day care which is what we needed to allow me to be "normal" and go to work. After the 20th phone call within 2 weeks from the day care about Robyn’s behavior and the fear she would hurt some one or herself, my husband and I discussed that it is okay for me to resign and become an at-home mom.

Of course, financially, I really needed to work, but the stress and strain as well as the progressiveness of the Autism became more dominant in our lives. Before I resigned, we planned for two months of my paycheck to not be used so that it would not become undue financial hardship. We did not incur too much debt at that time so we were able to bank my little paycheck. I then gave my two-week notice to my boss of six years. They gave me a great farewell party and had been my support system from the beginning of the Albinism to the onset of the Autism. I then began my crusade for day care for children with special needs. I was still able to make some financial contribution to our household because I became an American Red Cross Caseworker. It was a part-time job on the phone at home relaying messages to our service members overseas regarding family issues. This job also coordinated their emergency leave and need. I enjoyed baking cookies for my oldest daughter when she came home from school so there was a disappointment for resigning from my job but the blessing in disguise was I was there for my children.

Public schools became involved and integrated parents with their special needs children, but my Robyn was a bird of a different feather. It took education and the moving away from the myth that Autism develops from children whose moms are "cold" or considered "the refrigerator mom". Finally, more research developed and Autism is seen as biological/neurological and not psychological as it alluded to in the past. Two weeks after I resigned, Early Childhood Prevention arranged for half-day head start for Robyn. I found employment with a State Agency and resumed my occupation. It was a brief stay-at-home mom adventure, but it was worth it because there was a great need for services in the area of care for children like Robyn. Robyn will graduate from High School in 2010 at age 21. We have already noticed that it seems that now that the school systems and State agencies have become more aware of Autism the younger generation of them has a better chance, but there are not enough programs for when they become adults.

My husband and I did not follow the doctor's advice 20 years ago when he recommended "You might as well put her in an institution and get on with your life. 99% of parents waste their lives trying to raise this type of child and then when the child turns 10, they end up having to do it then." I merely told the doctor at that time, "You know the 1% that is left? We are banking on that." My story is that we are still standing! So now we have to pave another way to ensure the very special vulnerable citizens whom we love and are responsible for will receive the opportunity to express themselves whether it is verbal or nonverbal to live without incident or abuse. Yes, we can prove them wrong. Autism is okay because their contribution is to our social, spiritual, and mental consciousness. In order for us to make a great nation, the attitudes about special needs citizens must be adjusted; this must become true for all to communicate and to accept our diversity.