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Post by MB on Aug 1, 2005 22:40:27 GMT -5
I had the great pleasure of meeting Jackie and beautiful Miss Emily at the National Down syndrome Congress convention.
Jackie had a few of her paintings in the silent auction and I am now the proud owner of "IEP Jitters." It is a darling picture of a frog.
This country is full of beautiful families with kids with Ds.
mb
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Post by Ericsmomma on Aug 2, 2005 4:58:05 GMT -5
MB And Jackie,
How was the conference? Any new information or ideas? I'm glad you got to meet up.... the picture sounds sweet...I love frogs!..............Dolly
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Post by Emilysmom on Aug 2, 2005 5:28:19 GMT -5
MB~ Please post everything you learned at this conference!! LOL Ok.....well, a few of the highlights? I'm so glad you were able to meet Jackie.
Dolly~ If you love frogs, Jackie is the artist for you!! She has painted some of the cutest little frogs! I have this irrational FEAR of frogs..........but if I was ever going to like one of them, it would be one of Jackie's frogs!!
Did anyone else go to this conference?
Susan
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Post by Cbean on Aug 2, 2005 7:06:31 GMT -5
I'm jealous! As green as that frog with envy! Two of my favorite UnoMasers in the same room together - oh if only!!! Glad you two got to meet and how was the conference?
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Post by Jackie on Aug 2, 2005 9:47:21 GMT -5
Hi all...I had the great PLEASURE of meeting MB She is a real go getter and speaks quite eloquently. We shared a workshop so I got to see her in action. It was a very nice conference. I feel like it was a bit short in information for those of us with adults...but perhaps many of us are just "tired"...LOL. I bought a button downtown that said....IT'S BEEN LOVELY BUT I AM GOING TO SCREAM NOW...... As usual most of my perks came from sitting and sharing cokes and wine with other moms and fun people. I fess up...I did skip some things I planned on going to....LOL. Marnie had good attendance at her SIBS workshops. She was sure no one would come as she had the last two time slots of the day....but they did!!! She was wired for sound by the Discovery Channel ...who also videoed one entire workshop....she is not sure why but thinks it might be for footage for a special they are doing on a woman who is meeting her brother for the first time....as an adult. We shall see. One of the best talks I heard was Joan Medlen who sometimes reads here. She has written a terrific book full of do it yourself tips on food problems and nutrition for kids with DS. She has a terrific sense of humor which makes it fun to listen to her. www.woodbinehouse.com/main.asp_Q_product_id_E_1-890627-23-2_A_.aspI wish I could have met more people that I know online...know some were there...but........... Emily had a terrific time in the workshops and social events.....and of course we had a day (long one...LOL) at Disneyland. It helped that we met up the first day with Chris Devlin (the guy who did the Hallmark commercial a few years ago)...he has been a friend of Emilys for a number of years and comes with a terrific mom. We wound up our Disney day in Downtown Disney at the movies where we saw Charlie and the Chocolate Factory. I thought it was terrific but sadly not really a kids movie...too high tech for most kids..... And Susan...one day I will "force" a frog on you to get you over that irrational fear...... ;D Jackie
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Post by Jodi on Aug 2, 2005 10:32:26 GMT -5
Oh Geeze - wish I could have met you guys! I didn't go to everything - but one workshop in particular was pretty darn good. Wouldn't you know I don't have the name of the doc who put it on just right now, but he was great! It was about communicating with your child. He showed a video with a mom and her baby playing. The baby was maybe 5 mos (guess), and was laying on the floor. The mom had a squeaker toy and was putting it in the child's face, tickling her tummy, etc. The kid wasn't responding much. The mom was using a lot of language and movement - and basically was overstimulating the kid (I was busting up in the room because I DID THAT - thought I was being a good mom ). Anyhow, the next video shows the same mom just sitting there with the child on the floor again. This time she didn't do anything until the baby moved. The baby moved her arms, and the mom imitated. The baby moved again... and they starting "taking turns" with movement and sound. Then, the mom added just a little, maybe a little more movement and sound, but nothing drastic. The baby went nuts! Starting vocalizing a lot and moving all over. It was great! So, he basically said that he wished he could give everybody a copy of the tape, and include a roll of duct tape with it - so we would SHUT UP for a minute when interacting with our kids. He talked about how we need to slow down, enjoy our kids and not constantly be in therapy with them. Here's another example (I'm still cracking up because this is so something I would do...). This guy has his 4 (?) y.o. son in therapy with the doc. They get ready to leave and the little boy starts running his hand over the straws of a broom. The dad gets down and says "broom... this is a broom... you sweep with it... can you sweep with it?" The kid doesn't respond. The doc gets down and picks one of the pieces of straws off the broom and pokes the kid with it. The kid responds and does the same, they run their hands over it - play with it etc. Then the doc picks it up and starts sweeping, and says "sweep". The kids goes over and starts sweeping. Needless to say I go back to my room and PLAY with Ryan for hours - and HAD A GREAT TIME - NO THERAPY!!!! LOL!!! Went to another workshop done by Sue Buckley on Reading and Math. She had a lot of statistical data that was very interesting. Jodi
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Post by momofrussell on Aug 2, 2005 13:45:08 GMT -5
And if you get to meet Jackie and Emily at their house, they give you Ice Tea and yummy cookies! LOL... I even got the pleasure of meeting Elvis back in the day.... man.. that was along time ago... 5 yrs ago now it's been I think since I got to meet Jackie. Glad you all had fun and got to meet! A.
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Post by Jackie on Aug 2, 2005 14:42:22 GMT -5
Adrienne....was that FIVE YEARSago??? My how time flies. We have moved since then but still would like company....we are right off (literally two blocks) I 40 so anyone going cross country...stop in for a visit...I can also give you something stronger than Ice Tea if you have had a bad day....LOL
ELVIS is STILL around ...just not the man of choice in Emily's life. In fact....my cell phone rang in Its a Small World...and dang if it wasn't Elvis trying to reach Emily. He seemed confused to hear he found me in Disneyland....doubt he knew we were going there....LOL...and not sure how he even had MY cell number.
Jackie
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Post by Chris on Aug 2, 2005 15:46:26 GMT -5
Jodi ~ Was the workshop presenter James McDonald?
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Post by Jodi on Aug 2, 2005 16:18:46 GMT -5
CHRIS ~ YES!!! ... so you know who I'm talking about. Did you go? Or do you know him from another function? FYI for other unomasers... his website is www.jamesdmacdonald.org/
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Post by Ericsmomma on Aug 2, 2005 16:23:45 GMT -5
Love Dr. Macdonald...his website is awesome...worth looking into... Dolly
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Post by MB on Aug 2, 2005 17:03:25 GMT -5
I would wholeheartedly embrace Dr. Macdonald's methods. We have used them here at home for years. We train teachers and paras in these methods. It's not just about talking, it's about affording persons with Ds the opportunity to communicate. It is sending a message that they can, even as youngsters, have a say in matters. It draws them out into the world and let's them think they can have some control. It encourages them to try things because someone has stood far enough back and allowed them the time to process their surroundings, decide on a course of action and then take it.
If I had to do it again, I would have taken this workshop as soon as the baby was born. If you ever have the chance to take this workshop, please know it will make a dramatic difference in your child's life.
Then, you can start posting your conversations on Uno Mas!
I did take a workshop on Person Centered Planning. This gentlemen runs an adult living and employment agency in St. Louis. He talked about adults with Ds passing away and ending up in heaven. They are now made whole and can say whatever is on their minds when they were on earth. He bet all of us that they wouldn't say, "D*mn, I had a great IEP." They should be saying, "I had a great life."
Another workshop on IEPs suggested that everyone plug in 1/2 hour a month for parent consultation with each person who is responsible for any of your child's goals. Even if you don't meet with them, it keeps the teachers and therapists from being overscheduled by the school district. If that 1/2 hour is not accounted for on your IEP, it will be going on someone else's.
Behavior still seems to be the overriding concern for most parents.
There is still a feeling that the rest of the world needs to change to accommodate our children rather than our children needing to change and meet the rest of the world at least halfway.
I was very disappointed to hear a professor of special education tell a whole room of parents that kids with Ds can have friendships in elementary school and high school, but that middle school is "he**ish." I did not have the chance to refute her and was heartbroken that these parents of younger children had to leave that room without any skills or an optomistic attitude about their child's social life.
Ooops, have to run. I have to pick up the my eighth grader with Ds at a friend's house. He will kill me if I don't get him home in time to shower and do his hair in time for the next friend to pick him up an hour later. Maybe middle school is "he**ish" ----- for the chauffer!
Everybody have a great evening. See you later.
mb
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Post by MB on Aug 2, 2005 17:07:27 GMT -5
Oh, I asked Dr. Seigfried Peuschel to dance. My friend took a picture! It was such an honor to thank this wonderful man for the work he has done. He had a son with Ds who tragically died. FYI Seigfried Peuschel wrote A Parent's Guide to Down syndrome along with a few other books.
mb
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Post by MB on Aug 2, 2005 17:08:58 GMT -5
Oh, oh ... also said hi to Chris Burke!
mb
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Post by Chester on Aug 2, 2005 17:15:47 GMT -5
Great Reports, but you better hustle MB or you WILL be in trouble. How dare you make an 8th grader wait!
Dawn
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