It's been a year

When I read this it was like reliving what I went through two weeks ago. I took my daughters to the pediatrician and he told me the same exact words you heard about both of girls. Although I was horrified like you I was also in a way felt a little bit of peace in finally knowing what is wrong with them. Although my pediatrician wants a second opinion by a specialist I have been researching ever since I got the news. It seems as though with every article or discussion I read his diagnosis has already been confirmed. I love my daughters just the same though and whether the specialists confirm it or not I will still love them. Right now I am just full of mixed feelings though. The pediatrician is positive that something isn't right with them but I worry that if it isn't autism what is it? It feels like it is taking them forever to set up the appointment with the specialist. So all in all I am at this moment having a bad experience. The pediatrician already told me it could be weeks before we could get in to see the specialist and they haven't even set up an appointment yet. Like you I cry a lot, mostly when I am alone. I worry about the final diagnosis. It gives me hope though reading others posts and knowing that with education and patients that my girls behavior over time may improve. So I want to thank you for that.

Hi sweety, I'm so sorry that you had this to deal with, especially put so bluntly! It's a horrible word that instantly conjured up mental images of people rocking and hugging themselves in corners, for me anyway; luckily for most of us in reality things are different. People have used the word around near Bong for 5 years now and I prefer to think of it as AWE-tistic - he's a great little boy, just as your son is. I remember when he was 2 and the words "I'm afraid he has some autism," sent me into a numb silence - I had no idea what this meant. I don't think there's ever an easy way to be told that your child is "special". I know my son is special - he's mine isn't he and he's just him and I love him! The "some" was nearly as scary as the "autism", how much, would he have a life, would he ever grow-up, etc. We have come a long way and there is still a long road winding in front of us but we get there, one day at a time, I'm glad your little boy is getting on better and you are right - you should be proud of him.

I just found a letter from my grandmother (who lives back home, across the country), dated 2-28-05. That would be when my son was about 1 1/2 yrs old. I had written to her about his development (or lack thereof, in some respects), and she wrote to me "I am not being alarmist...." She helps my aunt care for her kids, the youngest of which has Autism. It was about 6 1/2 months later (just after his 2-yr well visit), that my son's pediatrician (mostly due to my persistence) referred us to an early intervention program. So I knew what Autism was, all too well. Only my cousin's Autism seems worse than my son's (although both are somehow considered "high functioning"), so I think while part of me was worried about my son having Autism, I was also thinking "well, he's not like my cousin, so how could he?" My cousin is now in public school with an aide, so that's great. My son is in his first year of special preschool, and now getting an additional hour of speech and OT per week. He's doing so much better! There are a lot of areas to work on, but according to his speech therapist, his vocabulary and receptive/expressive speech skills are where they should be for his age. So that's positive! I think really what hurt me was that because others in my family had spent so much time around my cousin, they felt that my son HAD to have Autism. What if he wasn't diagnosed with it? Then what would they have felt? But I really did feel at times like they were diagnosing him, and almost like they wanted him to have it. Which is ridiculous if you think about it, but at the time, it's how I felt as his mother. But I really took it pretty well when he was diagnosed. It wasn't a complete shock. My son is wonderful, whether he has Autism or not, whether he is blue or purple. You know?

HUGS been there hun, done that, have the tee shirt. Joking aside my nephew is 18 years old this year. About 15 years ago the phone call or the visit from my sister arrived and I remember it as clear as day. "He has autism" and our world turned upside down and it was as if someone had in deed told us that "He" my nephew had a terminal illness. We went through the process of grieving for the child lost and the new child we know had to get to know and understand. We where devestated, we denied it, we even said they where wrong. We looked for other reasons, and of course we blamed the MMR vaccination for his condition. It was not the MMR though, and it was not the ear infection he had before they flew to Germany. It was a genetically inherited condition that he had been born with. It takes a few years to "rear its head" The little boy, normal, healthy happy, little boy had been replaced by an alien that we could not understand. We so desperately wanted to love him and cherish him and of course protect him but he was different to those around him. "Why us???" my sister and her husband where in the military so the little boy was given the best medical care and EDUCATION. There is no medical treatment for Autism its all down to EDUCATION. Believe me hun when I say that there are ways to communicate with your son and that the grief and pain your feeling is totally natural and you do not need to be ashamed of any of those feelings. Your walking along a rocky path right now, things change in the field of Education. In the UK there is a society called the "National Autistic Society" they are wonderfully supportive. You probably have something similar where you live. Yes you have a special child, yes you have different child, yes you will never know what he would have been like without autism. That's hard I know. Someone once asked me if he was my son, or if we could not have him autistic, would we want that? I responded "I don't know, that's a hard question. The way I know my nephew, I would not be priveleged to know him that way if he where not autistic. If we could turn back time and make him not autistic, I don't think I would want to go down that path hun. After 18 years I know him as and who he is and I thank God that we have him. I love him so much and it took us a long time to get to know him and get over the pain of losing the boy he may have been. Finally as if fate where not dealing us one card where my Nephew is autistic, we have now discovered that my great nephew, his nephew is also autistic. Shrugs shoulders. I wouldn't change a thing. I am sorry for your pain and I thank you for sharing and I hope and pray that you also find some way through the dark path we have walked before you. x

My experience was different. I wanted to get my 9 year old son a referral from his doctor so that he could be properly diagnosed. He was about 4 years old at the time. I explained to my son's doctor how my son has been exhibiting signs of autism for quite some time (about 2 years), but she didn't think he was autistic, so she didn't give me the referral. 2 1/2 years went by and I figured it was time again to try and get a referral. My son's previous doctor wasn't there and his new doctor gave me a referral. And all I did was ask for the referral! I didn't have to explain it to him like I did with my son's previous doctor.

Hello, My name is Kelly. I have a 7 year old daughter who is autistic. I remember when she started showing signs and at the time I didn't know exactly what autism was and the way people were describing it, this wasn't my child. She started going to daycare around the age of 2 and wasn't playing with other children and regressed from alot of things she used to say and do daily. So the daycare instructor said that she thought I should have an assessment. Now I would have been ok with that but she got me in a room with her, and about 5 others who worked there and just sprung this on me and expected for me to be all accepting of this statement. I was just the opposite, I was furious and was in complete denial, which now I know is one of the stages when you learn of something like this, anyhow I did end up gettingt the assessment and sure enough she was autistic. Now I definitely felt like oh no she will never be able to do this and that, but then something inside me felt like I wasn't doing her justice by dwelling on the things she couldn't do and instead I should have been focusing on the things she can do. I am reading this book called Son Rise The Miracle Continues By Barry Neil Kaufman. His son was diagnosed and he no longer has traces of autism and graduated college and is also CEO of their program called Son Rise. The book describes what the family went through and although I can't relate to them perfectly they help you understand how to embrace your child. I think it is a great resource. We don't want to give our children self-fulfilling prophecies by thinking their condition is the worse in the world. I still have doubts from time to time but more happy times with my daughter. She is a little verbal so it helps me with dreams of her potential. Hope this helps! We have a group on CafeMom.com just for autism mommies! Come join us if you aren't already!