Guest guest Posted September 3, 2004 Report Share Posted September 3, 2004 I figured the pictures would be removed, but I am sure you get the idea. Kim cool software Michele, I came across this software in the Apple store and did not want to buy it if it would not work for Dylan. It was $60 which is worth it if it is usable for him, but not if he can't use it. Today I downloaded a 30day free trial from the web. It seems way cool! The website is inspiration.com and the product is Kidspiration2. It is based on the concept of story mapping to help a writer organize their thoughts before writing. This software starts with a picture version, so Dylan could tell about the different ways we traveled on our way to CA. If we wanted someone could then help him write a sentence about the picture or I think the computer gives ideas until they are independently writing. You can then choose to publish it, so for me it makes it into a word document with the story map and then the sentences. I can see printing these off and then people who don't know where we've been could read this book with Dylan and provide lots of opportunities to talk about his experiences. This is a sample one I made today, playing with the program. For Dylan having the language to search for pictures by group (there are a lot of pictures) will take some work and the choices are small. Things to work through, but it is a start. Aubrie has enough language she should zip through it. The software is designed K-12 and includes projects for reading, writing, math, social studies, and history. It seems like it could help her out with writing a lot. She can learn the conventions of writing, before her fingers are ready to print pretty letters, and she can get her point across. Kim Main Idea I went to California. airplane I flew on a plane. car We rented a car. boat I went on a boat. trolley We didn't get to go on the trolley. horse and buggy I saw a horse and buggy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2004 Report Share Posted September 3, 2004 Kim- I will check it out. There are so many great things out there -- finding them is the trick. Oh-- and then getting them used in school -- now there's a trick... Michele Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2004 Report Share Posted September 3, 2004 Michele, Yes, getting the school to use it is the trick. This program is designed for school use, so maybe they will get it. If not it could sure help out with homework. Once they saw what she was bringing in, I bet they would be interested. Since they don't have to buy her an FM system, maybe they can buy her a computer (alphasmart or whatever). We can always hope. I sent info on this to Dylan's team today as well. We'll see how it goes. The good news is that Dylan's O & M works with adults who are deafblind and is instrumental in helping them find the technologies that enable them to live life independently. He looks at Dylan as a future adult (different than many educators who only see the child in front of them) and he is interested in finding what technology may be useful to Dylan and getting him used to it early. He has shown me some phenomenal stuff that I can't imagine Dylan using, but he wants to start exposing him to it all now. Software is the simple part of what Ed is envisioning. Kim Re: cool software Kim- I will check it out. There are so many great things out there -- finding them is the trick. Oh-- and then getting them used in school -- now there's a trick... Michele Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2004 Report Share Posted September 3, 2004 Michele, Yes, getting the school to use it is the trick. This program is designed for school use, so maybe they will get it. If not it could sure help out with homework. Once they saw what she was bringing in, I bet they would be interested. Since they don't have to buy her an FM system, maybe they can buy her a computer (alphasmart or whatever). We can always hope. I sent info on this to Dylan's team today as well. We'll see how it goes. The good news is that Dylan's O & M works with adults who are deafblind and is instrumental in helping them find the technologies that enable them to live life independently. He looks at Dylan as a future adult (different than many educators who only see the child in front of them) and he is interested in finding what technology may be useful to Dylan and getting him used to it early. He has shown me some phenomenal stuff that I can't imagine Dylan using, but he wants to start exposing him to it all now. Software is the simple part of what Ed is envisioning. Kim Re: cool software Kim- I will check it out. There are so many great things out there -- finding them is the trick. Oh-- and then getting them used in school -- now there's a trick... Michele Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2004 Report Share Posted September 3, 2004 I Googled Kidspiration2 and found so much out there! There was a UK Adapt-It website with tons of wonderful software, adaptive keyboards, etc. I also found some pages of teaching ideas, templates, etc for Kidspiration2. It does look really great. Thanks for the tip- Michele W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2004 Report Share Posted September 3, 2004 I Googled Kidspiration2 and found so much out there! There was a UK Adapt-It website with tons of wonderful software, adaptive keyboards, etc. I also found some pages of teaching ideas, templates, etc for Kidspiration2. It does look really great. Thanks for the tip- Michele W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2004 Report Share Posted September 3, 2004 Having someone looking to the future, besides just you, is wonderful. Our DB specialist works with kids, but she does look ahead with me. We are the only 2 on the team thinking long term. Some of the others might think about it a bit, but they don't really " get it " . I have been worrying about 1st grade writing since preK and K. As I am copying all of Aubrie's stuff to send to Perkins, I am realizing how long I've been going on about the same stuff with little changes or results. If I can get myself together, there may be some big things coming at the IEP meeting mid-Sept. Michele Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2004 Report Share Posted September 3, 2004 Again you said it " If I can get myself together " and then when our lives are too crazy to become the technology expert (this is of course after becoming the medical expert, the behavior expert, the deafblind expert, the communication expert etc)before the IEP in mid Sept what happens? Nothing. Re: cool software Having someone looking to the future, besides just you, is wonderful. Our DB specialist works with kids, but she does look ahead with me. We are the only 2 on the team thinking long term. Some of the others might think about it a bit, but they don't really " get it " . I have been worrying about 1st grade writing since preK and K. As I am copying all of Aubrie's stuff to send to Perkins, I am realizing how long I've been going on about the same stuff with little changes or results. If I can get myself together, there may be some big things coming at the IEP meeting mid-Sept. Michele Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2004 Report Share Posted September 3, 2004 > what happens? Nothing. > > Exactly. If I don't do the research, make suggestion, and make a case for it, nothing new happens. Why do I have to find the answers? Aren't the professionals supposed to be doing that? And if they aren't or can't, why can't I get them to pay for the Perkins eval where maybe they can? Because I have to do the research, make the suggestion, and make the case for it, or they won't pay. Everything is contingent upon my energy level and time resources to be able to get it done. I know part of it is that the folks at the school really think they are doing fine. And maybe they are doing " fine " -- for now. But they are not looking at the big picture and the long run. Just doing " fine " is not enough to make a difference in Aubrie's adult success. Or am I just too anal about it all? Michele W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2004 Report Share Posted September 3, 2004 > what happens? Nothing. > > Exactly. If I don't do the research, make suggestion, and make a case for it, nothing new happens. Why do I have to find the answers? Aren't the professionals supposed to be doing that? And if they aren't or can't, why can't I get them to pay for the Perkins eval where maybe they can? Because I have to do the research, make the suggestion, and make the case for it, or they won't pay. Everything is contingent upon my energy level and time resources to be able to get it done. I know part of it is that the folks at the school really think they are doing fine. And maybe they are doing " fine " -- for now. But they are not looking at the big picture and the long run. Just doing " fine " is not enough to make a difference in Aubrie's adult success. Or am I just too anal about it all? Michele W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2004 Report Share Posted September 3, 2004 No you are not too anal about it. IF you don't stand up for her then who will. The good news is if you find out more after this IEP, you can always reconvene. Kim Re: cool software > what happens? Nothing. > > Exactly. If I don't do the research, make suggestion, and make a case for it, nothing new happens. Why do I have to find the answers? Aren't the professionals supposed to be doing that? And if they aren't or can't, why can't I get them to pay for the Perkins eval where maybe they can? Because I have to do the research, make the suggestion, and make the case for it, or they won't pay. Everything is contingent upon my energy level and time resources to be able to get it done. I know part of it is that the folks at the school really think they are doing fine. And maybe they are doing " fine " -- for now. But they are not looking at the big picture and the long run. Just doing " fine " is not enough to make a difference in Aubrie's adult success. Or am I just too anal about it all? Michele W Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2004 Report Share Posted September 3, 2004 No you are not too anal about it. IF you don't stand up for her then who will. The good news is if you find out more after this IEP, you can always reconvene. Kim Re: cool software > what happens? Nothing. > > Exactly. If I don't do the research, make suggestion, and make a case for it, nothing new happens. Why do I have to find the answers? Aren't the professionals supposed to be doing that? And if they aren't or can't, why can't I get them to pay for the Perkins eval where maybe they can? Because I have to do the research, make the suggestion, and make the case for it, or they won't pay. Everything is contingent upon my energy level and time resources to be able to get it done. I know part of it is that the folks at the school really think they are doing fine. And maybe they are doing " fine " -- for now. But they are not looking at the big picture and the long run. Just doing " fine " is not enough to make a difference in Aubrie's adult success. Or am I just too anal about it all? Michele W Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2004 Report Share Posted September 3, 2004 You're right. Of course, it'd be streamlined for all of us if I could get everything accomplished in this one meeting, but we know that won't really happen. But if I put things off til the next meeting , then the next, and then it takes several meetings of discussion before anything happens, well, we're talking a long time. Too much pressure for a tired mom. Aubrie does this new thing where she cries out my name in her sleep. Of course, I have to go see what she needs, and she's sound asleep! So she's sleeping fine, but I was up til after 3 last night!!! Michele --- we're off to get the new FM system in order! That will be exciting! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2004 Report Share Posted September 7, 2004 Michele, Not to worry!! All of this helps plan for a better evaluation for Aubrie. It all makes me (and the team) more cutely aware of your questions, thoughts. knowledge, etc. and what kinds of things will help Aubrie. Every little bit helps!! And... I would also like to reply regarding the sign/oral debate--well, you probably already know what I am going to say: anything that can help her communicate is what should be done. Sign and speech and perhaps some added enhancements like pictures and/or objects for new information if you are not sure she " got it " . By teaching her signs and giving her the opportunity for one more pathway for communication, it will NOT affect her use of speech and in fact, could have the opposite effect--her speech (and message)could be clearer and she could also feel more relaxed about communcating with others because she will know that people understand her better. And... regarding her fine motor control: so things will not be so clear at first; practice makes perfect, eh? If she has good models for signs presented to her and her attempts are corrected to the best of her abilities, she will be understood and her own sign articulation will improve. Many people have fine motor issues and they sign just fine (as many on this list have said). She is only 6--no decision now is or should be considered " lifelong " . Also, regarding handwriting and keyboarding. If she has the interest and ability, why not start her now with keyboarding? This is my opinion, perhaps others have more insight, but with things like the Alphasmart with has a small keyboard (for her small hands) and other computer programs to teach keyboarding--I can't imagine why someone would not start this skill development especially for a little one who appears to have the preliteracy skills necessary for this. (Did this make sense?) pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2004 Report Share Posted September 7, 2004 That was supposed to be " acutely aware " not " cutely aware " --I think I was thinking of Aubrie herself! pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2004 Report Share Posted September 7, 2004 Pam- Everything you said made sense. Now my question is how to implement all those things in the classroom in a way that is effective. Specific plans for technology learning, specific curriculum etc. And if the school does not have the provide the " Best " and " maximize potential " , then how do we determine what is " appropriate " and what is " above and beyond " ? I am in a very confusing frame of mind lately. Part could be lack of sleep and stress, but part is just that these issues are so complex for me. I hope that you guys can help me sort it out in a way that I can bring it back and make a difference. There may be things that don't need to be done, but the things that do need to be done, need to be done now. How's that for " did I make sense " ?? More later-- Michele W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2004 Report Share Posted September 7, 2004 Pam- Everything you said made sense. Now my question is how to implement all those things in the classroom in a way that is effective. Specific plans for technology learning, specific curriculum etc. And if the school does not have the provide the " Best " and " maximize potential " , then how do we determine what is " appropriate " and what is " above and beyond " ? I am in a very confusing frame of mind lately. Part could be lack of sleep and stress, but part is just that these issues are so complex for me. I hope that you guys can help me sort it out in a way that I can bring it back and make a difference. There may be things that don't need to be done, but the things that do need to be done, need to be done now. How's that for " did I make sense " ?? More later-- Michele W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2004 Report Share Posted September 7, 2004 Ugh. I'd started an email and went back to your original, and my first posting is lost. Just know that my mind is reeling after talking to my soon-to-be 25 year old who is in love for the first time in her life but nevertheless finds it necessary to go to South America to teach. I feel SOOO old. I don't remember where you live but strongly suggest that you check the 8th circuit for the ruling in our case. Others before us had tried to use " maximize " which is actually in our state plan; all cases failed. Our lawyer filed more-or-less on what was necessary for to receive an education. I don't think she ever mentioned maximize. The ruling even at the court of appeals level was unanimous and could give you guidance. I don't have the 8th circuit link in front of me but it should be easy to find. To access the court records once you get to the site (even briefs and oral arguements), click in Ellis or Streett (the two attorneys), or try and Springfield R-12. The wording of the opinions in the district and circuit court decisions could well give you needed help. Let me know if you need anything else. Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2004 Report Share Posted September 7, 2004 Martha- I found your case on the s Law site. It's discouraging that the courts are interpreting IDEA so conservatively. In my mind, it doesn't meet the ADA to provide just a minimal education for disabled children. We would expect more than the minimal for every other student. Our elementary school mission statement is: " Our goal is to challenge all students to pursue success and independence by providing a supportive, caring, and nurturing educational environment. " Our middle school mission statement: " Realizing students are our future, Pikeland Community School will help provide a positive learning environment so all students are given the opportunity to reach their full potential; enabling them to compete in a changing world. " It follows that kids who have IEP's in our district would be challenged to pursue success and independence and to achieve their full potential. It would be discriminatory to say that our district will educate regular kids to their full potential but will educate special ed kids just to some minimal benefit. I think we need a movement to restructure or reword IDEA to insure not just a minimally adequate education, but the opportunity to acheive full potential. That is what we offer regular kids and it is what we should offer all kids. Now, if there is a school district that sets out to provide the bare minimum for /all /students, then I guess that's fair, huh? Confusing. I don't even know where to start on getting things changed, but it sure doesn't make sense to me. Michele W Aubrie's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2004 Report Share Posted September 7, 2004 Michele, In the case of your district the wording of their mission statements could be used against them in an IDEA lawsuit. Most districts avoid such language, because it can hang them in too many instances, so they will win an IDEA case that uses such language. Really what it comes down for us parents is to know the language that will help us get what we want for our kids regardless of the district policies of ways to avoid spending money. We want our kids to have access to a free and APPOPRIATE education. Appropriate does not mean ideal or maximize potential, but if we document appropriate we can make sure they get the ideal. We just have to use the right words and if it comes down to lawyers make sure they understand that. In your case if the mission is to reach full potential then they better make sure Aubrie has access to the information that she is missing from her vision and hearing losses, even if they are mild, and to recognize the impact those combined losses have. Really knowing the law and tips for successful advocating (such as from slaw.com) can help get what you need now without litigation, (they are not hard)but also make sure you have the proper documentation all along the way, just in case it ever does come down to litigation. Kim L Re: cool software Martha- I found your case on the s Law site. It's discouraging that the courts are interpreting IDEA so conservatively. In my mind, it doesn't meet the ADA to provide just a minimal education for disabled children. We would expect more than the minimal for every other student. Our elementary school mission statement is: " Our goal is to challenge all students to pursue success and independence by providing a supportive, caring, and nurturing educational environment. " Our middle school mission statement: " Realizing students are our future, Pikeland Community School will help provide a positive learning environment so all students are given the opportunity to reach their full potential; enabling them to compete in a changing world. " It follows that kids who have IEP's in our district would be challenged to pursue success and independence and to achieve their full potential. It would be discriminatory to say that our district will educate regular kids to their full potential but will educate special ed kids just to some minimal benefit. I think we need a movement to restructure or reword IDEA to insure not just a minimally adequate education, but the opportunity to acheive full potential. That is what we offer regular kids and it is what we should offer all kids. Now, if there is a school district that sets out to provide the bare minimum for /all /students, then I guess that's fair, huh? Confusing. I don't even know where to start on getting things changed, but it sure doesn't make sense to me. Michele W Aubrie's mom Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2004 Report Share Posted September 7, 2004 Kim- Where did you get your advocacy knowledge? Did you attend Partners in Policymaking training? Or something else? I am feeling the need for more -- but don't know if I really have time and energy for it. I have attended a 's Law Training and it was wonderful! I've also attended small IEP and advocacy trainings in the state, but they are usually very basic info. Michele W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2004 Report Share Posted September 7, 2004 I did attend Partners in Policymaking last year, but perhaps more of my learning has come from the very painful lessons of trusting the school when advocating for my older son, Tyler. He will always pay the price for my learning curve. With Dylan I am much more wise in advance, which has helped me (so far -knock on wood)get what he needs in a cordial, but confident way. Granted a lot of that has to do with him being in the School for the Blind, which has its own way of handling IEPs etc. The IEPs at ASDB are so much more functional than the ones at our home district. Even so I still need to be organized, and keep all our data etc together, just in case we ever need it. I like slaw, I think they give you the advice you need and very positive, proactive ways of handling issues for IEPs. Partners in Policymaking includes information on advocating at a state and federal legislative level. I have used those skills to gain some confidence that writing a simple letter can make a difference in how the vote on a law turns out, to meet legislators and gain the confidence to call and talk with them about our concerns, and to gain the confidence that I could testify to congress on the behalf of our kids if it needed done. (so far I have only had to do it at public hearings). This is huge for me, because way back when in high school, I could have won the wallflower of the year award - I was so shy and quiet. The flip side is, during Partners in Policymaking you get to hear of all the other stories the participants share about fighting with school districts and if you are an empath like me, it can be totally overwhelming, because you want to heal it all, and you can't. It made me totally cynical about schools wanting to help our kids (individuals do, but systems don't), but it made me hopeful that I could have influence on our own little part of it. It was an emotionally draining experience as much as it was empowering, so timing is the key. Kim Re: cool software Kim- Where did you get your advocacy knowledge? Did you attend Partners in Policymaking training? Or something else? I am feeling the need for more -- but don't know if I really have time and energy for it. I have attended a 's Law Training and it was wonderful! I've also attended small IEP and advocacy trainings in the state, but they are usually very basic info. Michele W Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2004 Report Share Posted September 7, 2004 Kim- I know how overwhelming and draining those experiences can be. That's how I felt after the s Law training and after our state Inclusion conference. Very empowering, but frustrating as well. Makes you want to quit your job(s) and live on the capitol steps until things change. When I am able, I hope to pursue things further. It's too bad that we each learn from our own mistakes and then have to move on with our life without the opporunity to really make a difference with what we've learned. There's not enough time in one lifetime to learn our lessons, live our life, and pass on what we've learned on a grand scale. How did Ghandi, MLK Jr, etc do it?? Hmmm... Michele W Aubrie's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2004 Report Share Posted September 8, 2004 Pam- Thanks for everything -- in advance. Already you are such a source of support and encouragement. I sent off a CDrom with all of Aubrie's documents to date. There are even some photos for your enjoyment :-) I will work on compiling a list of questions and concerns that I'll send in advance if possible. I'm supposed to be sleeping. We leave at 4:30 am for the cast removal tomorrow. Dr has unexpected surgery so we have to get our work with him done before he heads to the OR. I am so excited I can't sleep. Plus thinking of all the things I have got to get done for work, home, kids, etc in the coming months. Having that info off to you guys was one big check mark on my list of things to do. Night, night... Michele W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2004 Report Share Posted September 9, 2004 I think ESY refers to extended school year, i.e., summer school. Martha Quote Link to comment Share on other sites More sharing options...
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