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	<title>Comments for rubysoup.com</title>
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	<description>Raising a Developmentally Disabled Child...One Mother's Experience</description>
	<pubDate>Tue, 06 Jan 2009 02:19:41 +0000</pubDate>
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		<title>Comment on Reduce the stigma of disability by avoiding the use of labels by johnny</title>
		<link>http://rubysoup.com/reduce-the-stigma-of-disability-by-avoiding-the-use-of-labels#comment-55</link>
		<dc:creator>johnny</dc:creator>
		<pubDate>Wed, 31 Dec 2008 01:18:54 +0000</pubDate>
		<guid isPermaLink="false">http://rubysoup.com/?p=193#comment-55</guid>
		<description>krbYEZ Thanks for good post</description>
		<content:encoded><![CDATA[<p>krbYEZ Thanks for good post</p>
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		<title>Comment on To be effective, caregivers must build and protect a relationship of trust by christie</title>
		<link>http://rubysoup.com/to-be-effective-caregivers-must-build-and-protect-a-relationship-of-trust#comment-54</link>
		<dc:creator>christie</dc:creator>
		<pubDate>Tue, 30 Dec 2008 19:38:30 +0000</pubDate>
		<guid isPermaLink="false">http://rubysoup.com/?p=229#comment-54</guid>
		<description>Thanks for the kudos.  We just do what we need to do every day and it's always nice to hear that others think we're doing a good job. It's a tough one as I know you are well aware. Thumbs up to you too!
I had a wonderful heart warming experience just a half hour ago that ties right in with these thoughts. I dropped my son and his beloved caregiver off at a therapy appointment. After the hellos, holiday greetings and chat about the day's plan, I said good-bye to my son for an hour so I could get a few things done. He questioned where I was going and why, we talked about all that, then I said "see ya".  He settled back in his chair and smiled a heart melting smile and said "see ya mom". I can't express enough how, after 18 years of feeling like I've been attached at the hip to this special boy, what that feeling is like to have us both be so totally comfortable and even content and happy to say "see ya" for a short time. I hope all parents of special needs children can experience this. AND, I hope all special needs children can experience this as well. It is soooo good for them to learn that they can trust others and have some independent time away from mom and dad and life's still GOOD!
HAPPY, HAPPY NEW YEAR to all!!</description>
		<content:encoded><![CDATA[<p>Thanks for the kudos.  We just do what we need to do every day and it&#8217;s always nice to hear that others think we&#8217;re doing a good job. It&#8217;s a tough one as I know you are well aware. Thumbs up to you too!<br />
I had a wonderful heart warming experience just a half hour ago that ties right in with these thoughts. I dropped my son and his beloved caregiver off at a therapy appointment. After the hellos, holiday greetings and chat about the day&#8217;s plan, I said good-bye to my son for an hour so I could get a few things done. He questioned where I was going and why, we talked about all that, then I said &#8220;see ya&#8221;.  He settled back in his chair and smiled a heart melting smile and said &#8220;see ya mom&#8221;. I can&#8217;t express enough how, after 18 years of feeling like I&#8217;ve been attached at the hip to this special boy, what that feeling is like to have us both be so totally comfortable and even content and happy to say &#8220;see ya&#8221; for a short time. I hope all parents of special needs children can experience this. AND, I hope all special needs children can experience this as well. It is soooo good for them to learn that they can trust others and have some independent time away from mom and dad and life&#8217;s still GOOD!<br />
HAPPY, HAPPY NEW YEAR to all!!</p>
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		<title>Comment on To be effective, caregivers must build and protect a relationship of trust by Tawny</title>
		<link>http://rubysoup.com/to-be-effective-caregivers-must-build-and-protect-a-relationship-of-trust#comment-53</link>
		<dc:creator>Tawny</dc:creator>
		<pubDate>Tue, 30 Dec 2008 18:22:47 +0000</pubDate>
		<guid isPermaLink="false">http://rubysoup.com/?p=229#comment-53</guid>
		<description>Thanks for sharing your personal experience and insight, Christie.  You make an excellent point about the conflict between trusting our maternal instincts and understanding the need to try things outside our comfort zone.  You are doing an amazing job with your son and set an excellent example for all of us!</description>
		<content:encoded><![CDATA[<p>Thanks for sharing your personal experience and insight, Christie.  You make an excellent point about the conflict between trusting our maternal instincts and understanding the need to try things outside our comfort zone.  You are doing an amazing job with your son and set an excellent example for all of us!</p>
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		<title>Comment on To be effective, caregivers must build and protect a relationship of trust by christie</title>
		<link>http://rubysoup.com/to-be-effective-caregivers-must-build-and-protect-a-relationship-of-trust#comment-52</link>
		<dc:creator>christie</dc:creator>
		<pubDate>Sat, 27 Dec 2008 02:02:37 +0000</pubDate>
		<guid isPermaLink="false">http://rubysoup.com/?p=229#comment-52</guid>
		<description>Another comment that came to my mind after the last posting was this...
I have to share that along with the huge responsibility (and honor) of being one of the two people in this world who make decisions for our son, I've also learned over eighteen plus years of caring for him that I do also need to listen to ideas that others have regarding his care and his life's experience. I do know that I have to ALWAYS listen to my maternal instincts when making decisions but there are many, many times when others have given us ideas that we've not thought of or that maybe we have thought of but thought it wasn't right for him.  Then after reconsidering, careful thought and soul-searching have decided to maybe give it a chance and had amazing and wonderful outcomes. We believe that while we are ALWAYS the ones who make decisions for him and we always have the ultimate last-say, it truly does "take a village" and our child's life has been enriched because we have learned that yes, sometimes there are some really great ideas out there regarding his life that weren't our own.  I hope all parents of special needs children can learn this because it is a very wonderful experience letting other loving people into your child's life to make a positive difference. Sometimes we're all just a little too protective and we do have that right, but it's very good for them when we learn to let go a little (with great caution) when the time is right for our children and they deserve that.  We owe them that.  And for those of you who may have known him, Tom Beatty was one of the people that helped teach us that lesson. Thanks Tom!</description>
		<content:encoded><![CDATA[<p>Another comment that came to my mind after the last posting was this&#8230;<br />
I have to share that along with the huge responsibility (and honor) of being one of the two people in this world who make decisions for our son, I&#8217;ve also learned over eighteen plus years of caring for him that I do also need to listen to ideas that others have regarding his care and his life&#8217;s experience. I do know that I have to ALWAYS listen to my maternal instincts when making decisions but there are many, many times when others have given us ideas that we&#8217;ve not thought of or that maybe we have thought of but thought it wasn&#8217;t right for him.  Then after reconsidering, careful thought and soul-searching have decided to maybe give it a chance and had amazing and wonderful outcomes. We believe that while we are ALWAYS the ones who make decisions for him and we always have the ultimate last-say, it truly does &#8220;take a village&#8221; and our child&#8217;s life has been enriched because we have learned that yes, sometimes there are some really great ideas out there regarding his life that weren&#8217;t our own.  I hope all parents of special needs children can learn this because it is a very wonderful experience letting other loving people into your child&#8217;s life to make a positive difference. Sometimes we&#8217;re all just a little too protective and we do have that right, but it&#8217;s very good for them when we learn to let go a little (with great caution) when the time is right for our children and they deserve that.  We owe them that.  And for those of you who may have known him, Tom Beatty was one of the people that helped teach us that lesson. Thanks Tom!</p>
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		<title>Comment on To be effective, caregivers must build and protect a relationship of trust by christie</title>
		<link>http://rubysoup.com/to-be-effective-caregivers-must-build-and-protect-a-relationship-of-trust#comment-51</link>
		<dc:creator>christie</dc:creator>
		<pubDate>Sat, 27 Dec 2008 01:43:42 +0000</pubDate>
		<guid isPermaLink="false">http://rubysoup.com/?p=229#comment-51</guid>
		<description>Thank you for this one. So true and so often overlooked in situations where well-meaning and big-hearted individuals are giving of their time and energy to help folks with disabilities experience some of the wonderful recreational activities that those of us who have been blessed with "able" bodies can take part in. We've experienced some of what you write about with our own child. We've even found ourselves guilty of doing things with him that end up frightening him away from certain activities just simply because of the way we presented it to him and allowed him to experience it the first time out. I will never forgive myself for taking a sister's advice on how I could clear my driveway of snow with the blower while caring for my special needs infant at the same time. Sounded like a good idea, I'd never had to do that before and she already has a couple of kids so maybe it would work.  NOT!! It was a scary experience for him that spoiled him for outdoor, snowy activities for quite awhile. I could still just kick myself for not listening to my own instincts as his mom. That was a huge lesson for me about listening to my own instincts and a hard lesson about how all the helpful advice others try to offer sometimes helps and sometimes is not good for my child. He has gotten over it and absolutely loves playing in the snow and riding snow machines and sledding and all that stuff now that he's a teenager but it took a long time.  We were absolutely blessed with adaptive ski instructors who really got it and started him off slowly, used the appropriate equipment, listened to us as his parents and allowed us to be side by side all the way with his skiing experiences. Yet,I can totally identify with the situation you've described where folks are really not trained in the "emotional handling" of assisting folks with experiencing certain activities.  In fact, we had a horrible experience a few years ago with an adaptive recreation program when we let a volunteer take him out on a jet ski. We gave repeated, explicit instructions about his abilities, disabilities, seizure risk, balance issues, etc. and felt confident that the instructor/volunteer was fully prepared to take him on "just a short little ride right around the little cove we were standing in at a slow speed and come right back". Well, this particular volunteer promptly "punched it" and headed out to the middle of the lake at break neck speed and threw us into a heart attack/anger frenzy and there we stood on the shoreline, helpless and furious. We luckily found someone with a radio and we got him back to shore pretty quickly and thank God, he loved it and had a great time but it could have been disastrous, given his disabilities.  Enough can not be said about learning about the person you are responsible for and at the very least, listen to advice from parents, caregivers and those who know the individual. You should not be volunteering if you don't get that part of it.</description>
		<content:encoded><![CDATA[<p>Thank you for this one. So true and so often overlooked in situations where well-meaning and big-hearted individuals are giving of their time and energy to help folks with disabilities experience some of the wonderful recreational activities that those of us who have been blessed with &#8220;able&#8221; bodies can take part in. We&#8217;ve experienced some of what you write about with our own child. We&#8217;ve even found ourselves guilty of doing things with him that end up frightening him away from certain activities just simply because of the way we presented it to him and allowed him to experience it the first time out. I will never forgive myself for taking a sister&#8217;s advice on how I could clear my driveway of snow with the blower while caring for my special needs infant at the same time. Sounded like a good idea, I&#8217;d never had to do that before and she already has a couple of kids so maybe it would work.  NOT!! It was a scary experience for him that spoiled him for outdoor, snowy activities for quite awhile. I could still just kick myself for not listening to my own instincts as his mom. That was a huge lesson for me about listening to my own instincts and a hard lesson about how all the helpful advice others try to offer sometimes helps and sometimes is not good for my child. He has gotten over it and absolutely loves playing in the snow and riding snow machines and sledding and all that stuff now that he&#8217;s a teenager but it took a long time.  We were absolutely blessed with adaptive ski instructors who really got it and started him off slowly, used the appropriate equipment, listened to us as his parents and allowed us to be side by side all the way with his skiing experiences. Yet,I can totally identify with the situation you&#8217;ve described where folks are really not trained in the &#8220;emotional handling&#8221; of assisting folks with experiencing certain activities.  In fact, we had a horrible experience a few years ago with an adaptive recreation program when we let a volunteer take him out on a jet ski. We gave repeated, explicit instructions about his abilities, disabilities, seizure risk, balance issues, etc. and felt confident that the instructor/volunteer was fully prepared to take him on &#8220;just a short little ride right around the little cove we were standing in at a slow speed and come right back&#8221;. Well, this particular volunteer promptly &#8220;punched it&#8221; and headed out to the middle of the lake at break neck speed and threw us into a heart attack/anger frenzy and there we stood on the shoreline, helpless and furious. We luckily found someone with a radio and we got him back to shore pretty quickly and thank God, he loved it and had a great time but it could have been disastrous, given his disabilities.  Enough can not be said about learning about the person you are responsible for and at the very least, listen to advice from parents, caregivers and those who know the individual. You should not be volunteering if you don&#8217;t get that part of it.</p>
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		<title>Comment on &#8220;Vaccines get new scrutiny&#8221; article&#8211;U.S. News &#038; World Report by Kathleen Houghton - Alaska MCS Assoc.</title>
		<link>http://rubysoup.com/vaccines-get-new-scrutiny-article-us-news-world-report#comment-49</link>
		<dc:creator>Kathleen Houghton - Alaska MCS Assoc.</dc:creator>
		<pubDate>Sun, 14 Dec 2008 03:10:12 +0000</pubDate>
		<guid isPermaLink="false">http://rubysoup.com/?p=215#comment-49</guid>
		<description>http://www.americanchronicle.com/articles/84862
 
Father Plays Russian Roulette With the Life of His Son in Parental Battle Over Vaccination Safety
by Lourdes Salvador 
December 13, 2008
A 3 year old Florida child is caught in a battle between his parents over vaccination. The divorced parents cannot agree on the child's best interests when it comes to vaccination.

Little 3-year-old Judah Howard may have inherited a rare genetic disorder that makes normal childhood immunizations a "shot in the dark".

If Judah suffers from the disorder, he could suffer irreversible damage or death from multiple vaccines. Screening and blood testing would determine if he suffers from the illness, however his father, Bill Howard, refuses to allow it.

Though the couple's divorce agreement stipulates that both parents must agree on medical decisions before they are carried out, Bill took Judah for multiple vaccinations in one day when Michel Howard, the boy's mother, thought they had gone to the zoo. Bill is now insisting on more vaccinations.

The impact of the vaccinations on little Judah has yet to be determined. Michel says, "The genetic disorder runs in my family. I don't think Bill realizes that Judah could end up dependent on full time medical care for the rest of his life."

Before the couple dissolved their marriage, both agreed on the importance of vaccines being given cautiously, individually, and spaced out. Since the dissolution, many loose ends remain regarding medical care for Judah.

Michel says, "Bill is angry that I divorced him and to get back at me, he is endangering our son's life."

But chances are extremely high that Judah has inherited this rare blood disorder from his mother, grandmother, aunt, and uncle who have had vaccination complications ranging from serious allergic reactions to lifelong neurological and immunological damage which now requires ongoing medical care.

Hannah Polling, a vaccine damaged girl in Georgia, recently won a vaccine court case in which it was determined her mitochondrial disease was exacerbated by vaccination, resulting in autism like symptoms.

Michel worries the same may happen to her child. "A simple test and evaluation can tell us for sure whether he can be safely vaccinated. The results will determine how and when the vaccines should be administered," she says.

Though Michel secured a pediatrician in Broward who is well versed in vaccine complications and these high risk kids, Bill would not allow it, saying it is further than he wants to travel.

"I'm not against vaccination. It would simply be irresponsible of me as a mother to administer any further immunizations due to the high likelihood of this inherited illness that has caused devastating life-long complications with other family members when they have been vaccinated. I love my son and want what's truly best for him."

While the parents battle it out and attempt to work with each other through a parent coordinator, Judah's fate may hang in the balance of court officials.</description>
		<content:encoded><![CDATA[<p><a href="http://www.americanchronicle.com/articles/84862" rel="nofollow">http://www.americanchronicle.com/articles/84862</a></p>
<p>Father Plays Russian Roulette With the Life of His Son in Parental Battle Over Vaccination Safety<br />
by Lourdes Salvador<br />
December 13, 2008<br />
A 3 year old Florida child is caught in a battle between his parents over vaccination. The divorced parents cannot agree on the child&#8217;s best interests when it comes to vaccination.</p>
<p>Little 3-year-old Judah Howard may have inherited a rare genetic disorder that makes normal childhood immunizations a &#8220;shot in the dark&#8221;.</p>
<p>If Judah suffers from the disorder, he could suffer irreversible damage or death from multiple vaccines. Screening and blood testing would determine if he suffers from the illness, however his father, Bill Howard, refuses to allow it.</p>
<p>Though the couple&#8217;s divorce agreement stipulates that both parents must agree on medical decisions before they are carried out, Bill took Judah for multiple vaccinations in one day when Michel Howard, the boy&#8217;s mother, thought they had gone to the zoo. Bill is now insisting on more vaccinations.</p>
<p>The impact of the vaccinations on little Judah has yet to be determined. Michel says, &#8220;The genetic disorder runs in my family. I don&#8217;t think Bill realizes that Judah could end up dependent on full time medical care for the rest of his life.&#8221;</p>
<p>Before the couple dissolved their marriage, both agreed on the importance of vaccines being given cautiously, individually, and spaced out. Since the dissolution, many loose ends remain regarding medical care for Judah.</p>
<p>Michel says, &#8220;Bill is angry that I divorced him and to get back at me, he is endangering our son&#8217;s life.&#8221;</p>
<p>But chances are extremely high that Judah has inherited this rare blood disorder from his mother, grandmother, aunt, and uncle who have had vaccination complications ranging from serious allergic reactions to lifelong neurological and immunological damage which now requires ongoing medical care.</p>
<p>Hannah Polling, a vaccine damaged girl in Georgia, recently won a vaccine court case in which it was determined her mitochondrial disease was exacerbated by vaccination, resulting in autism like symptoms.</p>
<p>Michel worries the same may happen to her child. &#8220;A simple test and evaluation can tell us for sure whether he can be safely vaccinated. The results will determine how and when the vaccines should be administered,&#8221; she says.</p>
<p>Though Michel secured a pediatrician in Broward who is well versed in vaccine complications and these high risk kids, Bill would not allow it, saying it is further than he wants to travel.</p>
<p>&#8220;I&#8217;m not against vaccination. It would simply be irresponsible of me as a mother to administer any further immunizations due to the high likelihood of this inherited illness that has caused devastating life-long complications with other family members when they have been vaccinated. I love my son and want what&#8217;s truly best for him.&#8221;</p>
<p>While the parents battle it out and attempt to work with each other through a parent coordinator, Judah&#8217;s fate may hang in the balance of court officials.</p>
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		<title>Comment on &#8220;Vaccines get new scrutiny&#8221; article&#8211;U.S. News &#038; World Report by Tawny</title>
		<link>http://rubysoup.com/vaccines-get-new-scrutiny-article-us-news-world-report#comment-48</link>
		<dc:creator>Tawny</dc:creator>
		<pubDate>Fri, 12 Dec 2008 23:32:33 +0000</pubDate>
		<guid isPermaLink="false">http://rubysoup.com/?p=215#comment-48</guid>
		<description>Thanks, Ron!  Maybe I need a "Shameless Self-Promotion" category like you do...I thought about it.  :)</description>
		<content:encoded><![CDATA[<p>Thanks, Ron!  Maybe I need a &#8220;Shameless Self-Promotion&#8221; category like you do&#8230;I thought about it.  <img src='http://rubysoup.com/wp-includes/images/smilies/icon_smile.gif' alt=':)' class='wp-smiley' /></p>
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		<title>Comment on &#8220;Vaccines get new scrutiny&#8221; article&#8211;U.S. News &#038; World Report by Ron Niebrugge</title>
		<link>http://rubysoup.com/vaccines-get-new-scrutiny-article-us-news-world-report#comment-47</link>
		<dc:creator>Ron Niebrugge</dc:creator>
		<pubDate>Fri, 12 Dec 2008 20:19:13 +0000</pubDate>
		<guid isPermaLink="false">http://rubysoup.com/?p=215#comment-47</guid>
		<description>Wow.  I gotta say, it is really cool your name, along with Quincy's - and your quotes in such a big magazine!  Congratulations.

Ron</description>
		<content:encoded><![CDATA[<p>Wow.  I gotta say, it is really cool your name, along with Quincy&#8217;s - and your quotes in such a big magazine!  Congratulations.</p>
<p>Ron</p>
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		<title>Comment on Reduce the stigma of disability by avoiding the use of labels by Rob</title>
		<link>http://rubysoup.com/reduce-the-stigma-of-disability-by-avoiding-the-use-of-labels#comment-45</link>
		<dc:creator>Rob</dc:creator>
		<pubDate>Wed, 03 Dec 2008 21:39:38 +0000</pubDate>
		<guid isPermaLink="false">http://rubysoup.com/?p=193#comment-45</guid>
		<description>I hate labels that limit. I love this post.  Nicely done.</description>
		<content:encoded><![CDATA[<p>I hate labels that limit. I love this post.  Nicely done.</p>
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		<title>Comment on The challenge of seizure control by Momw</title>
		<link>http://rubysoup.com/the-challenge-of-seizure-control#comment-44</link>
		<dc:creator>Momw</dc:creator>
		<pubDate>Wed, 12 Nov 2008 23:08:36 +0000</pubDate>
		<guid isPermaLink="false">http://rubysoup.com/?p=158#comment-44</guid>
		<description>My heart always breaks for my beautiful granddaughter during these times.  May God have mercy and help all of her caregivers find the answer.</description>
		<content:encoded><![CDATA[<p>My heart always breaks for my beautiful granddaughter during these times.  May God have mercy and help all of her caregivers find the answer.</p>
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