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I know what you mean about the junk we have been getting. It's pretty disgusting. Alex is 26 months now. He is doing fairly well. His speech is pretty much nonexistent. He has a few important signs, so we pretty much know what he wants. He starts OT in June. He has some sensory issues. They mostly have to do with feeding. When did you find out your son was autistic? What were the signs. My son is very social so people have been saying there is no way he is autistic, but I have always had my worries. This whole Weaver syndrome is so frustrating because there is no literature on it. Things that come up with Alex I wonder if it has to do with the syndrome or if I need to be looking for something else. He gets a lot of colds. They last about 2 weeks then he is clear for maybe two weeks and then it comes again. It is very frustrating. We have about 8 therapy appts. a month
and I do them all myself. I am very tired at this stage of the game because he is soooo active and I do everything for him it seems. i am hoping the OT will help him mellow out a little bit. He needs to be by my side constantly and gets very worried when I leave the room. He is with me almost every waking moment. But then there are times when he is so cute that I could just eat him up! Go figure. I think feeling alone with this syndrome is part of the game because there is nobody else out there with it to talk to. I would love to meet up with someone sometime. Where in WA are you? I am in Portland, OR. Hang in there!
Mary
April Hooper <ahooburg79@...> wrote:
April Hooper <ahooburg79@...> wrote:
Hi, sorry 'bout the long subject line, but I've been getting junk
sent to me throught this site. I wish those people would leave this
site alone...
Anyways, Devon is doing good. A lot of changes going on...He is 5 1/2
now and getting bigger every month. His speech is improving and with
that the behavior part is also getting better. Allergies are getting
the better of him for now, it is the season...He has an appiontment
to see a allergy and asthma specialist this month. Hopefully we will
get some good advise. He gets so out of breath. His oxygen levels
drop and heart rate goes way up anyone have same or simular symptoms?
This is nothing new, but the doctors that were trying to figure it
out left the childrens hospital last year..bummer as Devon says. They
could not figure if it was his heart or lungs or a combo. Any one
have problems with sensory intergration/dysfunction with their weaver
syndrome kids? This has been a continueing issue. He also is
autistic, so the sensory thing might be more from that then weaver
syndrome????
Hope to hear from someone soon, I'm feeling all alone again. People
try to say they understand, but unless you have lived in my house or
walked in my shoes, I sincerely doubt anyone understands what me and
my family have been going through.
I hope all the little ones are doing great and continueing to thrive
and gain milestones. Again I hope to hear from someone soon. Take
care ALL!!
April in washington
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