Post Date: 3/4/07 5:25 pm
Topic: Autism Walk of Hope
We are doing our first ever Walk of Hope benefitting Acadiana Society for Autistic Citizens on March 31, 2007 in Lafayette, LA. I haven't been on OH lately as much as I would like because I've been volunteering with ASAC and helping my husband with the Boy Scouts since several dads are having medical problems. I miss spend the time here but my kids will be in college before I realize it so.... If you are interested you can view my son's page or donate to ASAC by clicking the link or the widget on my profile which will lead you to his page http://www.firstgiving.com/reallyroger We are forming a team for each of our children and this is my son's page. My son has Asperger's Syndrome on the Autism Spectrum. He enjoys being a Boy Scout, a member of his school band and reading books. Thanks, Anne

Post Date: 10/23/06 12:53 pm
Topic: RE: HAVE I FAILED THE TEST?????
I think we all struggle with whether we do too much for our kids when they can't do things for themselves. My son also had seizures until the last year, so we never, EVER left him alone. Now we're struggling with what things he can do for himself now that we take the seizures out of the equation. At this point, all we've worked up to is letting him take the garbage out to the dumpster in the parking lot. And goodness knows, even at 19, we haven't been letting the boy pour his own cereal because we don't want a mess to clean up! We were just talking today about how WE are the ones who need to work on that more than he does. You are definitely not alone with these questions.

Post Date: 8/24/06 4:05 pm
Topic: Aspergers Diagnosis
We just got the long awaited diagnosis of Aspergers for my 13 year old son. ANY help, info, or just someone to talk to to would be so welcomed! I have researched on the internet since 2000. I just knew as a Mother that this was what was going on, but never got the right answers! I am a basket full of emotions! Thanks, Lindy

Post Date: 5/25/06 3:17 pm
Topic: Hev-b Proteins and Autism
Research article at http://www.autismdoc.org describes exogenous protein insult and the incidence of Autism.

Post Date: 3/29/06 5:26 pm
Topic: RE: A little Rant/Rave
Jenn, I am a respite care provider for PDD children. I have worked in many classrooms over the years and all I wanted to say was..do what works for you and your child. I am not a big believer in ABA but for some kids it works well. HAve you ever heard of Developmental Therapy? Floortime is also a great example of what I find "works." Do you children use PECS to help them with their communication? I found that using the PECS program was really beneficial. I still use PECS a lot with the children I work for privately....as well as expectant waiting. I admire you and your husband for all your strength and courage. Sounds like you are a very busy mom Best of luck to you on your upcoming surgery! It's ok to rant and rave from time to time- we all do it! Take care, Christine

Post Date: 3/25/06 10:07 am
Topic: RE: Today really SUCKS!
Jenn, first let me say I'm sorry that you are going thru this. I only have one little girl and she has asperger. She wasn't dx'd until she was 7 or 8. Before that all they would tell us was that she was adhd. So we lost all the early intervention. Thank God you have that on your side. Some days with her are wonderful, almost normal then others are a totaly nightmare. All I can say is stay strong and when you can't ask for help. I keep reminding my self that if it is this hard on me I can only imajine how it must be for them. Pam

Post Date: 3/25/06 9:34 am
Topic: RE: Cool Forum
Hello KD, I am so glad to meet you. I have an 11 yo daughter with as. I am so glad to see an adult with this condition. I needed to know that there is a chance for her to grow up, get married, and even have children of her own. Welcome to this board. Come here a lot. I check in about every two days since there is not a whole lot of activity. I will see your post eventually though and will respond. Pam

Post Date: 3/24/06 3:36 pm
Topic: RE: HOW DO YOU HANDLE THE STRESS?
I heard a speaker once who said that parents who lose a child, go through the grieving process and get on with their lives as best they can. Parents with a disabled child go through the grieving process over and over and never make it through it. I totally understand your frustration. One on the things I have the most problem with is not participating in normal "family" activities like attending weddings. celebrating an event together at a restaurant, etc. I have tried and tried over the years to make our family seem as normal as possible but then we end up with a disappointing result as you did with the wedding. My husband has finally convinced me that we might as well avoid some events if we don't have arrangements made for Jacob. It made me very sad to have to plan my oldest son's wedding on a weekend that Jacob could have respite care. It didn't seem right that he should be excluded but none of us would have enjoyed ourselves. It doesn't seem at all fair and it isn't! We are getting to the point of looking for group home placement. Part of me feels like I am abandoning him but the saner part knows that he loves the structure and activities provided for him at a group home. He loves his weekend respites and cannot wait to go again. Our weekends with him bore him. Our situation is the opposite. I have more patience with Jacob than my husband but then he has evolved into the primary caregiver which I assume is probably your role with your daughter. I think it is normal to be more frustrated when you are the one directing their activities and taking care of their hygiene needs etc. I don't think anyone could answer your question now about your daughter's future. All we can do is take it one day at a time. Some things get better but then new challenges develop. There is a lot of focus out there now on autism. The resources available now are so much more extensive than ten years ago so who knows what they will come up with in the next 10 years. My sanity has been preserved only through my friendship with other mothers of autistic children. Family members, no matter how sympathetic, just don't have a clue what we go through on a daily basis. The older my child has become the more my family would just soon avoid being with him or hearing about our challenges. Deep down I know they are thankful it is us and not them and then there is some guilt that they don't know how or want to help. Don't know if that helps. Email me anytime. janmmiller1@msn.com Jan

Post Date: 3/22/06 5:09 pm
Topic: RE: A little Rant/Rave
Robin -- Thanks so much for the kind words and prayers!!! BTW, I am by no means a superwoman. I am so fortunate that my husband is so involved with our kids too. We just do what needs to done. Kim -- ABA is "Applied Behavioral Analysis". Think of Palov's Dog experiment. A lot of parents swear by it. Basically you pay a therapist lots of cash to sit with your child and in my opinion do "drills". They call it a discreet trial. It requires a lot of time, and a huge commitment. When my son was doing ABA it was very difficult for him to stay focused. Toys as motivation didn't keep his attention either. We tried many tactics to keep him engaged, but he would tire out too easily. Most of my son's success has been due to floortime and music therapy. According to an Autism Specialist here in Seattle, the most important thing I can do for him is to make sure he gets as many socialization experiences as possible. This way he can learn from others and learn by example. In his spec. ed preschool they have "peer models" which is a wonderful tool for him and others in his classroom with special needs. My daughter (twin A) was officially diagnosed yesterday with Autism. We are planning on trying all the therapies that we did with my son. We'll try ABA with her as well, even though I don't like it. Tomorrow we get the results for her twin sister. I don't think she's on the spectrum. Her only real issue at this point is a communication delay. As a parent, I feel I need to be open-minded about various therapies. However, frustration rears its ugly head when parents say that only one type of therapy will "cure" your child. ABAers are notorious for those kind of comments. Each family has to decide what to try, what works best and what they can afford. It's as simple as that. Jenn