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Post by Jodi on Apr 1, 2005 22:37:02 GMT -5
Isn't it funny how you don't mind being up at odd hours in the morning because your little one is on the mend? Glad she is doing better!
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Post by Jodi on Apr 5, 2005 9:27:38 GMT -5
I know what you mean... I adore Ryan at 6, but I sure miss him as a baby!! He was so cute; I never wanted to put him down!
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Post by Jodi on Apr 4, 2005 21:52:55 GMT -5
I hate to feed into this more... but this is the latest on ebay. It's a little better than the other one, but, HOLY TOLEDO, it is selling for more than $170.00!!! There are three bids. WOW. the description is as follows: "All Babies are Special some are big some are little some are blond some are dark Some have special needs! I met a new friend last week and we started discussing My Work as a Doll Designer, She said her little Girl wouldn't play with dolls , I of course ask why, She told me her Daughter said they didn't look like her!!! She has Down Syndrome. The mother and I talked some more and I said I would see what I could come up with for a Doll .. Well!!!!! this is Dravon My first Down Baby he is a Newborn size weighted to 5 lbs 21" long hand rooted angora goat hair( curly) glass eyes bluegrey, bellie plate(anatomically correct) Dravon is Cold Cast Silicone, head, arms and legs jointed body This is Baby No. 1 and the Cold cast Silicone version of Dravon will be a very small edition I am working to get a playdoll edition produced in the Near future This is a very Exciting project for Me." Link: cgi.ebay.com/ws/eBayISAPI.dll?ViewItem&category=327&item=5569912985&rd=1
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Post by Jodi on Apr 1, 2005 21:06:58 GMT -5
I have seen her other dolls with Ds about a month ago... she hasn't gotten any better at it! Oh my goodness, it's pretty funny! I feel kinda bad because she thinks they are sooooo special - and she is providing a wonderful service...
I guess it's nice that Ds has touched her life in some manner, I just wish she was more "artistic" about it. Oh well.
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Post by Jodi on Mar 31, 2005 13:53:07 GMT -5
I've taken a sick comfort in your reponses (LOL)!! Allisa... I was getting used to the all the books being on the floor!!
I do learn a lot from Ryan. I just had a thought... next time my boss askes me to do something, think I'll just "go limp" on my desk!!! ;D
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Post by Jodi on Mar 30, 2005 18:40:21 GMT -5
This may be along the line of some previous posts, so please forgive me if I'm being redundant, again (LOL).
I struggle with the whole "when to discipline" subject. I wonder if I use Ryan's inability to communicate easliy as an excuse for his negative behavior. As I have said before, I think it's the "not knowing why" he does things that drives me crazy.
I have learned about replacement behaviors so that Ryan can still communicate with me, but in more appropriate ways. However, there are days when he is just a bu** though, and I know it is beyond whatever limits his disability places on him. Example: when I ask him to clean up sometimes, he will "go limp" and just lay on the floor saying "no". I learned that I have to give him warnings for transitions, so I tell him we will clean up in five minutes (granted he has no concept of time, but he knows that means "soon"). Then, when the timer goes off, he says "no" before I even tell him to get started (stinker). So, he understands what is going on. I anticipate the negative behaviors in certain situations simply because I know what pushes his buttons, so I try to head things off. There are days I will make a game of it, but I'm sure you all have those days when you just want to get it done.
I have pulled my hair out over so many "issues" over the last 6 years that I only have about three left. I don't know if I'm making sense, but I'm wondering if there are any other bald parents out there struggling with this. Seems like there are no clear answers, and everything requires a different strategy and boy it's gets me tired constantly "thinking" about it. I think about those people who struggle with major medical issues on top of what I'm talking about... geeze, how do they handle it all???
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Post by Jodi on Mar 31, 2005 22:45:05 GMT -5
Now you got me thinking... Ryan had T&A about three years ago. His ENT said there was really no question - it was a no brainer. Both were huge. We stayed 2 nights at Children's hospital in LA. (Flashback - we had to stay in the cancer ward because they were short on beds. We were there two nights, and watched as two families said goodbye to their children - absolutely heartbreaking!). Anyway - Ryan is doing soooooo much better - he made huge strides in development in the first year following his surgery. However lately I noticed he is snoring again and it appears like he stops breathing a little - nothing like before, but enough that now I've read these posts I think I'll call the ENT! Sorry but I have no suggestions
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Post by Jodi on Mar 29, 2005 23:09:37 GMT -5
I don't know your exact situation, but maybe you can request a team meeting to discuss this issue, and maybe amend the IEP to include a summer program.
My reasoning for ESY services was to maintain and/or improve upon skill levels achieved during academic year, and to also avoid any regression in all areas of development (speech, and ot included!).
I know how frustrating it is not getting information up front.
Good luck.
Jodi
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Post by Jodi on May 29, 2005 14:46:26 GMT -5
They are such...
Happy Loving Stubborn Sweet Special Friendly Innocent Angelic blah blah blah
I think I'm still cranky...
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Post by Jodi on Mar 29, 2005 22:55:19 GMT -5
We purchased the Bell Howell alarms from Heartland America (online). We got a set of 8 for $20. They work great.
We also use a picture schedule. Although it's not perfect, sometimes Ryan will bring a picture of the park, or one of the swingset instead of just heading for the door. That's his way of asking permission. (Sometimes he brings 5 or 6 outdoor pictures -- guessing he REALLY wants to go outside then!! ;D)
Unfortunately I leave extremely early in the morning sometimes (while it is still dark) and I have forgotten about the alarm -- now that will wake ya up!
I can see why MB is referenced so much on this site... great ideas!
Good luck to you!
Jodi
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Post by Jodi on Mar 28, 2005 21:16:20 GMT -5
What's Down syndrome go to do with it? My short answer is it has everything to do with it.
It affects all areas of Ryan's development; cognitive, physical, and social.
I try to avoid using Ds as an "excuse" when dealing with difficult situations (behavior problems, potty training (LOL), among other things). However, I must at least consider the possibility it MAY have something to do with the difficult situation in order to best solve the problem at hand. Sometimes it is very easy to tell. Unfortunately there are times when there is no clear answer, and I am left guessing.
Jodi
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Post by Jodi on Mar 28, 2005 21:32:57 GMT -5
My boy did the same thing. He enjoyed watching me pick up after him, it was a real hoot!
When he would start, I would ask him if he wanted "more" (sign more) or if he was "all done" (signing all-done). At first, he would just look at me and smile (grrrrrrr). Anyway, after asking, I would say "all done" (sign all-done), take him out of his chair, and tell him to "clean-up". I would have him help (to the best of his ability) clean up his own mess.
Sometimes I would have a ball nearby, and when he started throwing the food, I would show him the ball, and say "we can through the ball, but we don't throw food" (later had to change that to "throw a ball OUTSIDE, not INSIDE" - but hey, one step at a time, right?).
Later, he did the same thing with his toys. Throwing them all over the place all the time.
It took a while, and maybe he just grew tired of not getting the response he used to get from me - which resulted in him cleaning up.
Good luck to you!
Jodi
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Post by Jodi on Mar 26, 2005 20:50:49 GMT -5
Ryan (6) has a hard time at baseball games. When someone hits a homerun, they use fireworks and then the crowd really cheers. Sometimes it helps when I prepare him. I will talk to him at the stadium about home runs and fireworks. When I see a ball going out, I quickly tell him, "look ... there's going to be fireworks". The fireworks themselves really don't bother him. It's the cheering that gets to him. He will usually cover his ears and "fold-up" in the seat!!
When he was a baby, it was the trash truck... Oh my goodness that really scared him!!! But he is over that now.
Jodi
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Post by Jodi on Apr 1, 2005 20:56:25 GMT -5
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Post by Jodi on Mar 31, 2005 22:32:22 GMT -5
I just love looking at everyone's picture - cute cute cute! I think I'm Photobucket-challenged! I've tried everything The pictures don't finish loading on photobucket - maybe they are too big? I'm not sure how to resize them... Also, I'm having a hard time signing on to the photoalbum. I have a new password, but the system won't recognize it. Does anyone know if ofoto works (it probably does - I just can't figure that out either)
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