Guest guest Posted August 26, 2005 Report Share Posted August 26, 2005 Wow, how wonderful to be so close to Judith at the HANDLE Institute. Judith is a woman who has many of the criteria of CHARGE, but CHARGE wasn't known when she was growing up. She has learned from her own experiences and through applied neuroscience studies how to gently enhance the person's neurodevelopment. She uses a combination of many other specialties, but does so in a way that is totally child driven. Where most therapists do therapy when it fits their schedule and pushes them through it when they don't like it, Judith pays attention to what the resistance is telling us about the child's system and makes adaptations accordingly. Dylan had delayed, but what I would consider " normal " development once his hearing and vision loss were accounted for. At age 4 he ceased to play with toys normally, became obsessed with a basting brush instead, did not progress with language or social play and so forth. It felt like a thief had come in the night and stolen the Dylan I knew and loved. Dylan's states became more pronounced and his " frantic states " were more often. Then he progressed to sudden onset multiple tics and excessive motor movement. At that point I knew I had to do something if we did not want him on psych meds at age 8. We first saw Judith in August of last year, then had a follow up in Dec. The archives should have multiple notes from me around that time about HANDLE, although the ones in Aug. don't say HANDLE - would have been around Aug. 30th. To summarize, I have the child I knew the first four years back! Can I say it was all HANDLE? Probably not. Do I think it was a LARGE part of it? Absolutely yes! Would we have prevented the years of autistic-like behavior if we had seen Judith when he was 3 or were the issues not there then? That is one I cannot answer. Would she have been able to help with different issues, like sensitivity to food on the face or hands, control of the tongue ......, probably. Money - In Seattle there are hospitals and insurance companies that do recognize the benefits of Judith's work and will pay. Otherwise, we are typically on our own. Other than distance, that is the problem most families face. It is expensive, approx $3000 for the initial work and f/u done within 6 months. Because the body is continually developing, it is not possible to " fix " it all right then and there. I believe it is a work in progress. I expect there will come a time when Dylan becomes " stuck " again and we will need to pay to see Judith again. Would it be worth the money to me? Yes! Judith does offer informational sessions in the evenings where she explains what HANDLE is about. You might want to see about going to one. Kim > > I just have to mention that you all are such a wealth of knowledge and I no > longer feel alone in the pursuit to make life better for my little girl. You > are all a tremendous gift to my entire family. That being said, I have yet > another question. I feel like I have new questions all the time, but here it > goes: I called the HANDLE Institute in Seattle today (30 miles North of where > I live) to ask what they can do for kids with CHARGE. To be honest I know > nothing of HANDLE, but recalled families (like Kim, mom to Dylan) mentioning > it in e-mails, so I thought I needed to find out more about it. So, my > question is, what is HANDLE, and is it something we should look into for Maya? > Is it something I would pay out of pocket for or can insurance or county > monies pay for it? And most of all, what results have you seen in your CHARGE > kids? Thanks again, > > Marty, mom to Maya CHARGEr 13 months > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2005 Report Share Posted August 26, 2005 Martha, Where do you live in WA? I am caregiver and friend to , with CHARGE. We live in the Gig Harbor/Tacoma area. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2005 Report Share Posted August 27, 2005 true michelle it is very complex and we learn from each other i love your wrods of widsom xxxxxx > > We also live in Tacoma. Feel free to call my cell at . > Martha > > courtneyandheather wrote: > Martha, > > Where do you live in WA? I am caregiver and friend to , > with CHARGE. We live in the Gig Harbor/Tacoma area. > > > > > > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada > information and membership, please visit http://www.chargesyndrome.ca, or > email info@.... > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org <http://www.chargesyndrome.org> or by calling > 1-. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2005 Report Share Posted August 28, 2005 : is also in the Churkendoose Anthology.and I am also a believer of the HANDLE methodology. Judith was so amazing with evaluating and developing therapies for . And she still loves many of those activities today. also " connected " with Judith right away. One thing I remember was swinging her leg - hard - while doing the first part of the interview/evaluation session. When I tried to get to stop, Judith just said that maybe " needed " to do that and to not stop her. Judith noticed there were certain situations where did this a lot - like when she was in a chair that didn't permit her to touch the ground. The motion acted like a force to help keep her in place on the chair. I would have never thought about that one! There was just so very much we learned about her from Judith that I can't even begin to do the evaluation and therapy exercises justice! Friends in CHARGE, Marilyn Ogan Mom of Ken (16 yrs., Asperger Syndrome) Mom of (13 yrs., CHARGE+, JRA) Wife of Rick (I'm still workin' on the railroad!) oganm@... Fishers, IN _____ From: CHARGE [mailto:CHARGE ] On Behalf Of Ginn Sent: Friday, August 26, 2005 6:00 PM To: CHARGE Subject: Re: Handle My is in the Churkendoose Anthology...I am a firm believer in the HANDLE program. We still do some of the exercises. Judith has a way of connecting with that was almost eery. Judith was the first person that initiated a hug to...After spending two sessions with Judith. I think was 4. It is like was saying, " Thank goodness! Someone finally understands me! " Our insurance paid for the program because the assistant was an OT. G Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2005 Report Share Posted August 28, 2005 i havent met judith or had handle but everything ive heard about her on here is very positive she sounds like a great adovocate for charge kids and i just want to sau anyone thinking of seeing her should just read this list as i do and see all the wonderful coments towards her i believe if she saw all the comments shed be over the moon in fact i want to know is she in this list serve if you out there you are an inspriation to many especialy the ones haveing but also the ones like me who havent had it but have heard lots about it keep up the great work ellen > > : > > is also in the Churkendoose Anthology.and I am also a believer of > the HANDLE methodology. Judith was so amazing with evaluating and > developing therapies for . And she still loves many of those > activities today. > > > > also " connected " with Judith right away. One thing I remember was > swinging her leg - hard - while doing the first part of the > interview/evaluation session. When I tried to get to stop, Judith > just said that maybe " needed " to do that and to not stop her. > Judith noticed there were certain situations where did this a lot > - > like when she was in a chair that didn't permit her to touch the ground. > The motion acted like a force to help keep her in place on the chair. I > would have never thought about that one! There was just so very much we > learned about her from Judith that I can't even begin to do the evaluation > and therapy exercises justice! > > > > Friends in CHARGE, > > Marilyn Ogan > > Mom of Ken (16 yrs., Asperger Syndrome) > > Mom of (13 yrs., CHARGE+, JRA) > > Wife of Rick (I'm still workin' on the railroad!) > > oganm@... > > Fishers, IN > > > > _____ > > From: CHARGE [mailto:CHARGE ] On Behalf Of > Ginn > Sent: Friday, August 26, 2005 6:00 PM > To: CHARGE > Subject: Re: Handle > > > > My is in the Churkendoose Anthology...I am a firm believer in > the HANDLE program. We still do some of the exercises. Judith has a > way of connecting with that was almost eery. Judith was the > first person that initiated a hug to...After spending two > sessions with Judith. I think was 4. It is like was > saying, " Thank goodness! Someone finally understands me! " > > Our insurance paid for the program because the assistant was an OT. > G > > > > Quote Link to comment Share on other sites More sharing options...
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