Guest guest Posted September 7, 2006 Report Share Posted September 7, 2006 Hi Welcome to the group. We are a group of about 500 families and individuals from all over the world. List at the end of this email are some of the members in the California area. You might like to contact them. There is quite a lot of good information about BPES, but nearly all of it is written for people in the people in the medical profession, so it is a little difficult to understand. However - you might like to start by looking here: http://www.geneclinics.org/servlet/access?db=geneclinics & site=gt & id=8888891 & key=yvyThuThGZXK5 & gry= & fcn=y & fw=suti & filename=/profiles/bpes/index.htmlThis one is a good starting point. It does have a lot of detailed medical terms, However, it is possible to understand some of it. Also, it isupdated regularly.The people who maintain the information are the lab in Belgium that do the tests. Also, being associate with the University of Washington, Seattle, itis considered to be a highly respectable source of information.This site also has information about situations where one parent also has BPES, and situations where neither parent has BPES. (take a look at thechapter on: Risk to Family Members).Another good site is this one:http://www.emedicine.com/ent/topic97.htmThe main topic here is surgery. The author's credentials appear to be very impressive. I would recommend that people print these articles and send them to their doctor. Ask your doctor to read it and to go through the topics with you,face to face, and explain what it means. They will be able to skip the items that are detailed medical terms, or of little relevance.Take careShireen London, England Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2007 Report Share Posted December 29, 2007 Hi. Check out First Signs (firstsigns.org) the Autism Research Institute (ARI) and FEAT (Families for early/effective autism treatment, there are chapters everywhere) is basically where I would have you start. Get him medically checked out, especially, by as many experts as possible Objectively, of the compulsion of reason and conscious, thereof. Keep him engaged, communicationally. Provide him what he needs, as best as you can find out of him being a unique individual, communicatively, of reason, thereof. We are not better than these people because we have the resources/reinforcements to deal with them. Expose any abuse, thereof, of challenging people to " meaningful " action.. . I narrate, to the individual/child in question, questioning/experimenting towards the interests and needs, of feelings, of choice/s, of the child, thereof, and utilize errorless learning inherent to Verbal Behavior-based ABA for the successes of Understanding More, thereof. 93% of all communication is non-verbal, according to Dr. Phil. Communicate to facilitate communication in this respect of that, ( simplification for Understanding More.. . It's a step-by-step process of easy and doable towards what isn't so, of the child's needs and interests, as an Individual, thereof I more than hope that helps, of that.. . Mike, I ABA ABA for Understanding > > If anyone can help with some insight, I appreciate it!!!! My nephew > is 2 1/2 years old and doesn't say ONE word. He will grunt and > whine if he wants something. When he was just an infant, at about 6 > months old I visited my brother's house and found laying in > his playpen. I had brought him a toy and I said, " Look , > Auntie brought you something new to play with!!! " The child never > acknowledged me or the toy. I said to my sister in law, " hmmm, he > isn't too interested. " She told me that he LOVES to stare at the > sides of the playpen and will lay there doing so for hours. I > picked him up trying to engage him in some communication. He was > somewhat responsive....but, not like my kids used to be. For one > thing neither of my children would have laid quietly in a playpen > while awake for ANY length of time. Okay, that was that day...Then, > I noticed at one year of age wasn't crawling...My kids were > both WALKING by one year of age. This child wasn't even crawling, > and not sitting up without assistance. At about 15 months > started to crawl, but, a military belly crawl...Not on his knees and > hands. He was 18 months old and not standing...Not trying to walk > and had NO TEETH. Then about two years old he got two TOP TEETH, > not the typical bottom teeth. Now he is 2 1/2, will turn 3 in June, > and he doesn't utter ONE word. Not Mama, Dada, bye bye, nothing. > He grunts, but, now he's started throwing fits and tantrems. He > walks now with an unusual gate of tippy toes and sometimes runs in > circles with his hands waving all the while. I knew from his > infancy that something was just not right with him. But, my sister > in law, (a nurse) ignored everything. I think she's in denial and > my brother doesn't know anything about child development > milestones...He's a businessman. I truly believe is > autistic. He does smile, but, he additionally has always had what > we originally thought was cute habit of waving his hands at > things...Now I understand that to be " hand flapping " . He has always > done that. He will wave his hands at your hair, your clothes ( and > he loves to touch different textures of fabric), his toys. He waves > his hands at everything, but if you say bye bye to him he will not > wave bye bye. He just looks. He seems oblivious. I am almost > certain this child has autism and would really like some feedback. > > Thank you so much, > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.