Terri,

Thank you for responding.  Over the past year we have noticed a behavior pattern with Reagan that really concerns us.  It seems as he cannot express his frustrations/emotions in a way that will be effective and get him back in "thinking mode" rather than just being focused on what his immediate frustration/disappointment/emotion is.  He needs contant reinforcement on what is going to happen each day.  We are by nature very structured, and with the birth of Reagan and the diagnosis of PWS and the need for routine -- we are even more so now.  We are diligent in routine /structure in terms of eating tiimes, food, bedtime,etc.  If by some chance the schedule needs to be changed and I am not able to give him a heads up about it, we are going to have a meltdown.  If he is told that he will be able to do a particular activity (we use the "first and then" method) and he is not abe to do that activity exactly as promised he gets very upset and cries, and just cannot get past it.  If he is angry he makes a breathy sound and flaps his hands, sometimes he says "Oh, Oh, Oh, but no real words to describe what is wrong.  He gets angry over every little thing that is out of place to him. These episodes are short lived at the moment, but as he gets older and stronger I fear that it will get worse.  Reagan is very verbal, has great communication skills as far as taking turns and using a give and take dialog with someone. He has greatly improved in making eye contact and sustaining eye contact.  I think that this has been attributed to a change in diet - using organic foods and removing artificial sugars such as splenda and the like, high fructose corn syrup, and recently wheat and gluten. However, he lacks in social (peer) skills and coping skills.  He is never agressive, or mean in any way. Actually the opposite, he gets his feelings hurt and is sad.  He gets these big crocodile tears in his eyes, and no sound.  No crying, no tears.  I worry about him holding back the tears, and not verbally expressing himself.  I say to him...Take a deep breath, blow it out..use your words and talk to me.  Sometimes it works, but mostly it's a guessing game for me.  Reagan has only been slightly behind in hitting his milestones.  We are thankful for all that he has accomplished.  He is still very behind in OT and PT.  He has hand tremors when trying to do a fine motor task.  Academically he is doing great.  He is bright, funny and has a great sense of humor, loves to play and pretend.  We are just starting to see a Behaviorlist.  Our first meeting was last night.  She said some very positive, wonderful things about Reagan.  I have struggled for the past year with questioning if he is autistic or not, and how to best go about helping him. She answered my question - she said he is very social, he is not autistic, but he does have some things that coincide with PDD, and we will concentrate on those things.  I am praying that this therapy will bring answers to many other questions for us as well.

Diane Seely


-----Original Message-----
From: Terri & Howard Schlange <familyof4@...>
To: pws-autism@yahoogroups.com
Sent: Mon, 7 Jan 2008 9:58 pm
Subject: Re: [pws-autism] PWS-PDD