Guest guest Posted November 6, 2003 Report Share Posted November 6, 2003 Hi, Bridget My son, is a type 2 and he's 6 years old. Any questions? Ask away and I'll see if I can help. 's Mummy New here Hi, I just joined yesterday and have not received any posts. Anyway I am a developmental specialist for the WV Birth to Three programs. I will be working with a baby with SMA Type II in a few weeks and was looking for updated info. I hope I am in the right place. Bridget A. WV : BirthtoThreeSupport Please join if you are a parent or professional interested in networking with others in Early Intervention. : Corticalvisionimpairments Please join if you are interesting in discussing CVI and issues with that diagnosis. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2003 Report Share Posted November 6, 2003 Hi Bridget, We have had great support from our developmental specialists. (Bernie is type 2, now 7 years old.) I'm confident some of them would be happy to chat as fellow professionals - email me off the list if you want the info: eross@... You may want to look at Bernie's web site - there are lots of photos of equipment we used when he was little. http://www.ugalumni.uoguelph.ca/~eross/bern_intro.html Bettylou Ross Hi, I just joined yesterday and have not received any posts. Anyway I am a developmental specialist for the WV Birth to Three programs. I will be working with a baby with SMA Type II in a few weeks and was looking for updated info. I hope I am in the right place. Bridget A. WV : BirthtoThreeSupport Please join if you are a parent or professional interested in networking with others in Early Intervention. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2003 Report Share Posted November 6, 2003 Bettylou, Great pictures of your family. I laughed when I read the interests page...Ben and Warhammer. Be warned...They don't outgrow it. Chuck plays once or twice a week. I wonder if Bernie will. I used to play Dungeons & Dragons...Still want to paint miniatures. Alana At 05:15 PM 11/6/03 -0500, you wrote: >Hi Bridget, >We have had great support from our developmental specialists. (Bernie is >type 2, now 7 years old.) I'm confident some of them would be happy to >chat as fellow professionals - email me off the list if you want the info: >eross@... >You may want to look at Bernie's web site - there are lots of photos of >equipment we used when he was little. >http://www.ugalumni.uoguelph.ca/~eross/bern_intro.html >Bettylou Ross > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2003 Report Share Posted November 6, 2003 Thanks! No, Ben shows no signs of quitting Warhammer - that's OK by me. I am a Tolkien fan myself from way back, so it is at least one thing we share for fun. bettylou Re: New here Bettylou, Great pictures of your family. I laughed when I read the interests page...Ben and Warhammer. Be warned...They don't outgrow it. Chuck plays once or twice a week. I wonder if Bernie will. I used to play Dungeons & Dragons...Still want to paint miniatures. Alana At 05:15 PM 11/6/03 -0500, you wrote: >Hi Bridget, >We have had great support from our developmental specialists. (Bernie is >type 2, now 7 years old.) I'm confident some of them would be happy to >chat as fellow professionals - email me off the list if you want the info: >eross@... >You may want to look at Bernie's web site - there are lots of photos of >equipment we used when he was little. >http://www.ugalumni.uoguelph.ca/~eross/bern_intro.html >Bettylou Ross > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2003 Report Share Posted November 7, 2003 I admire you Bridget....from the support list I am on I have read alot from parents who say their child's OT, PT, etc...really didn't care they were just doing their job...you are showing us that you care enough about your patients to research how you can help them to the best of your abilities. I don't know if its my daughter you are referring to..seeing how my daughter was just diagnosed with SMA Type II and is currently in the process of beginning the WV Birth to 3 program....even if you aren't our DS....I am sure the child you are referring to will be in good hands....I would highly suggest joining the www.smasupport.com chat list but use an alternate email account seeing how this list can be heavy at times. Doddie Daughter: age 7 months > Hi, I just joined yesterday and have not received any posts. Anyway I am a > developmental specialist for the WV Birth to Three programs. I will be working > with a baby with SMA Type II in a few weeks and was looking for updated info. > I hope I am in the right place. > > Bridget A. > WV > : BirthtoThreeSupport > Please join if you are a parent or professional interested in networking with > others in Early Intervention. > > : Corticalvisionimpairments > Please join if you are interesting in discussing CVI and issues with that > diagnosis. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2003 Report Share Posted November 7, 2003 I actually love the Warhammer addiction. I relate to it much more than, say, football. And YAY Tolkien...Changed my life! Thanks for sharing your web page. Alana At 09:24 PM 11/6/03 -0500, you wrote: >Thanks! No, Ben shows no signs of quitting Warhammer - that's OK by me. I >am a Tolkien fan myself from way back, so it is at least one thing we >share for fun. >bettylou Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2003 Report Share Posted November 9, 2003 These lists are heavy. I will try to keep up seeing that I am on about 15 lists and the 3 of my own just trying to stay updated on everything new for myself and the families I work with. I am dedicated to my job because I love what I do. Bridget A. WV : BirthtoThreeSupport Please join if you are a parent or professional interested in networking with others in Early Intervention. : Corticalvisionimpairments Please join if you are interesting in discussing CVI and issues with that diagnosis. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2004 Report Share Posted January 3, 2004 Hello Kim, Welcome to Life Lift We don't have Life Lift on DVD yet, however suddenly in the past few months we have had so many requests for DVD that I expect we will be getting them right after the first of the year. There have been several people who have said Life Lift has been incredible for helping with panic attacks. There are some great testimonials on the web sites that you can read. Have a wonderful New Year, Rashelle The Body You Have Always Wanted is Coming Soon! What can changing the way you breathe do for you? More than you can imagine! Remember that it is oxygen that burns fat, tones muscle, reduces stress and increases strength and endurance. Learn to breathe in the most efficient way possible with Life Lift! Click here to see why tens of thousands agree, Life Lift is the best! http://www.oxygenlift.net Life Lift is the Original Aerobic Breathing. New Here Hi all. I am here a little bit prematurely...I have not ordered yet. i have done BodyFlex before and had done very well, but unfortunately due to some problems I have with panic attacks, I had stopped exercising. Anyway, I am VERY interested in starting Lifelift and am curious if anyone knows if it is available on DVD. I have checked and dont seem to find them anywhere. I do not have a VCR . Thanks so much for your help. Kim What can changing the way you breathe do for you? Everything! See why tens of thousands agree, Life Lift is the best! http://www.oxygenzoo.com ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2004 Report Share Posted January 11, 2004 Hi Nikki First of all, a big pat on the back for you and starting BFL. It will be the most rewarding thing you'll ever do for yourself, and the others around you. This is a great group to get advice from, or just vent sometimes. You're going to do great. Best of luck to you Crystal > Hi, I am new here. I have been " trying " to start BFL for about three years > now, but I kept getting pregnant. So I never followed through. > I have come to the point in my life where I need a change, not only for > physical, but for my emotional well being. I really like the way I feel when I am > eating healthy and working out. > I will officially start my challenge monday, but the past week I have been > eating BFL. And I would just like to say, this is the most self discipline I > have ever had. Usually when I " tried " BFL in the past, I would just always end > up taking free meals, here and there, which added up. But yesterday, my > husband and I were in the car and he wanted Taco Bell, but he wouldn't get it > because he knew that I was really trying to eat healthy......and you know what I > said? I said, go ahead. I will be ok. And I was!!!!!!!! > So that is my intro, sorry for making it so long! I will have a lot of > questions, so sorry in advance. I AM going to do this right, this time. > Nikki > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2004 Report Share Posted January 14, 2004 Welcome to the group le! I'm a, mom to Miranda 7.5, Meredith 6 and Emma 3 we live in Michigan with my husband on a crop farm. There are a great bunch of ladies here! a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2004 Report Share Posted March 18, 2004 In a message dated 3/18/2004 3:21:30 PM Eastern Standard Time, writes: I am on my first challenge and have 5 weeks left. I have a beautiful 16 month old daughter who I stay home with. I started at 132 and am at 130 - normally only 2 lbs lost after 7 weeks of HARD work would make me crazy, but I know the scale isn't a valid indicator on this program. Also... yesterday I bought a size 4 pair of jeans!!!! I have NEVER EVER worn a 4 - EVER!!! I started at a solid size 10. B4lifemom, Gosh I wonder how this is done. Are your results amazingly different than anything you've seen before. I started at a size 12 eleven weeks ago and I still can't fit into a 10 comfortably. You've already dropped 3 sizes in 5 weeks! K Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2004 Report Share Posted April 26, 2004 Welcome, Tim. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2004 Report Share Posted April 26, 2004 hi tim, welcome to the group! i'm alana, am also 37, have sma2, and live in berkeley, california. am vent dependent, use a power chair, live on my own, hire personal assistants, work at a computer training school, have a great time with friends/boyfriend/family...life is good. where are you? alana new here hello, my name is Tim, I am 37 and have sma. I am looking forward to meeting some of you and possibly getting re-acquainted with some of the people in here that I already know. Especially you, Tufty Sue . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2004 Report Share Posted April 26, 2004 Hi Tim!! I am 37 too!! Way to go!! I do not have SMA tho, but my daughter is almost 5 years old with SMA type 2/3. Welcome to the group! Lots of wonderful, kewl kewl people here! Feel free to chat anytime...any of you guys on this list actually: brendabrames@... crystalssmaclub@... or sweet_n_finickie (on messenger) Sincerely, Brames Crystal, SMA type II/III (heckst which one) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2004 Report Share Posted April 26, 2004 Hi Tim, Welcome! My name is na. I am 26yrs old and have SMA 2. I live in NYC with my boyfriend, , and have a BA in Psychology. It is nice to meet you. -na > hello, my name is Tim, I am 37 and have sma. I am looking forward > to meeting some of you and possibly getting re-acquainted with some > of the people in here that I already know. Especially you, Tufty > Sue . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2004 Report Share Posted April 27, 2004 hey tim, i`m patie, 23 sma II from poland nice to meet you. http://patie.tripod.com http://patie.blog.pl GG 902963 ICQ: 27512127 ID: lilcia2001 MSN Messenger: patie_polczyk@... AIM: LilPatMarcel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2004 Report Share Posted April 28, 2004 Hi Tim Welcome to the list, nice to see you here. Hows things, what have you been up to since we last talked? That must be quite a few years? Sue > hello, my name is Tim, I am 37 and have sma. I am looking forward > to meeting some of you and possibly getting re-acquainted with some > of the people in here that I already know. Especially you, Tufty > Sue . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2004 Report Share Posted April 30, 2004 You're welcome, Suzy, You may want to check with his group in Japan: Japan Muscular Dystrophy Association National recuperations Education Center 2-2-8 Nishi-Waseda-Edu Center, Sinjuko-Ku, Tokyo 162 Phone: 81.5273 2930 - Fax: 81.35 215 1735 E-mail: yk@...,edu Good luck! Alana Re: new here Alana, Thanks for your e-mail. I wish this type of support group is available in Japan. It is very helpful and like you said, everyone is so knowledgeable. Thanks again. Suzy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 We have a Caravan with an automatic ramp. TX voc rehab paid for the modifications ($17,000). I was already employed several years but they also help people stay employed with helping with things like this. They paid for mods on our first van while we were in college too. Have you asked voc rehab yet? Lori new here It is so nice to meet all of you! I'm an English major with a double minor in spanish and anthropology. My ultimate goal is law school but I'm willing to teach too. Right now I'm trying to figure out how to raise money for vehicle mods or a new vehicle. I traded my van in because between payments, insur and gas we were shelling out almost $1000 a month! Now we have a pontiac Aztec...the gas mileage is sooooooo much better. What kind of vehicle mods do you all have? Kisha A FEW RULES * The list members come from many backgrounds, ages and beliefs So all members most be tolerant and respectful to all members. * Some adult language and topics (like sexual health, swearing..) may occur occasionally in emails. Over use of inappropriate language will not be allowed. If your under 16 ask your parents/gaurdian before you join the list. * No SPAMMING or sending numerous emails unrelated to the topics of spinal muscular atrophy, health, and the daily issues of the disabled. Post message: Subscribe: -subscribe Unsubscribe: -unsubscribe List manager: (Sexy Mature Artist) Email: Esma1999@... oogroups.com List manager: (Sexy Mature Artist) Email: Esma1999@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2004 Report Share Posted May 25, 2004 Faith, What a perfect name... First of all you deserve a major accolades for what you have ALREADY accomplished! You have achieved what millions fail to do every day and for that, you are already a winner... I'm very new to the challenge and this group too, but both have been a wonderful experience thus far. I know you will have lots of positivity from this decision you've made. The people in this group are so helpful, feel free to ask anything and they will give a well informed and caring answer. I look forward to hearing about your success! I know you'll do it! WOW good for you! Take care! -Ruth > Hi everyone, > > My name is Faith. I am new to this group and looking forward to > sharing this experience with all of you. I am a single mom with 2 > children and reached an all time high weight of 304 lbs last May. I > am now down 109 lbs and weigh 195. I just started working out at the > gym and I know this 12 week challenge will keep me moving in the > right direction. Any advice or encouragement is welcome. Thanks, Faith Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2004 Report Share Posted May 25, 2004 Hi Faith! First I think you should change your screen name - boringNHmom is just not very positive (lol!). I'm sure your anything but boring! Congrats on your accomplishments thus far... Building muscle at the gym is probably just what you need to jumpstart that additional fat loss. Keep us all posted of your progress! in WI New here > Hi everyone, > > My name is Faith. I am new to this group and looking forward to > sharing this experience with all of you. I am a single mom with 2 > children and reached an all time high weight of 304 lbs last May. I > am now down 109 lbs and weigh 195. I just started working out at the > gym and I know this 12 week challenge will keep me moving in the > right direction. Any advice or encouragement is welcome. Thanks, Faith > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2004 Report Share Posted July 8, 2004 Hi, welcome to the group! :-) How are your first 4 weeks going? Let us know if you have any questions. new here Hi! I just joined yesterday. I'm in my late 20s, vegetarian, reside in NC, and have been working slowly but surely at the BfL program for about 4 weeks. I found this group listed on the BfL website and I look forward to learning and sharing! Miu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2004 Report Share Posted August 8, 2004 Welcome Anjil > Hey everyone just wanted to post up that I 'm a new member joinin > the club! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2004 Report Share Posted August 9, 2004 Welcome !! Anne M. McCusker McCusker Health & Nutrition, LLC. Small Steps to Peak Health a.mccusker@... 719.578.8371 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2004 Report Share Posted October 24, 2004 Hello Debbie, and welcome to this wonderful group. Alot of what you described reminds me of my son Cameron. He's 4. He had a serious speech delay, not saying ANYTHING until well after he was 3, but I am attributing much of that delay to ear trouble. He got tubes in January 03, but it was Jan. 04 before he started talking, and once he started, we haven't been able to make him stop! LOL Cameron is obsessed with anything Blue's Clues, and yellow cars. At 3 1/2 years old, he could write his name, spelling it correctly, and count to 10 in English and Spanish. He can't stand to be without clothes on unless he is taking a bath. He sleeps with his shoes on and sleeps on the floor. He lines the VCR cassette tapes side by side on his dresser every night before going to bed. He still will not poop in the potty and we only got him to go tee tee in the potty in July (turned 4 in Sept.). Cameron HATES changes in the routine, which often make him throw himself on the floor in a fit. Getting a diagnosis can be a frustrating sequence of events. We've been working on it for over a year and still do not have an official diagnosis. It hard when they are so smart and have learned how to behave in public and you are the only one who sees these things. But you have come to the right place for support. If your son does have autism or Asperger's, don't fret. There is hope for these kids! With the right therapy and even some have improved with diet changes, these kids can improve so much. "Autism" can be a scary and overwhelming word at first, but you're not alone. You can email me privately if you want- anyone on this list can. Anne -- New here Hi, my name is Debbie, Im new on this board, so this post may be long. My son Camden is 3 1/2 years old, I also have a 20 month old, named Tanner. A little background on Camden. At 18 months he had speech delay and only used grunting. at 20 minths he became more and more frustrated then normal kids his age, and he was given home spech therapy. At 24 months he became obsessed with Credit card symbols on tv, instores, on gas station signs etc. At 3 year of age he became fixated on DVD symbols, and any movie trademarks, like Pizar, DVD, Dreamworks, Paramount, FBI, the warning on videos, the rating system ( G, Pg 13). He also knows what is in theatres and what is only out on vhs and video. Also at age 3 he transitions from the local infants and toddlers to a speech preschool 4 days a week for 2 1/2 hours a day ( 9-11:30), I transport him. His teacher says they have a psycologist atthe school taht would evaluate him if she ever saw signs of autism and to tdae she only will say she thinks something else is going on but hasnt answered my request to have the school psycologist observe him. I finally went through my insurance and saw a psycologist friday who after 15 minutes of observing and chatting with me, brought up autism and aspergers. I have consulted University of land Pedicatrics and am waiting to get called back for a ustism pedicatrical developmental evaluation for autism. Camden is very bright, knows how to count 1-300 and 300 back to 1. Heknows his alphabet, can spell and say his name, my name and his brothers, and all his family members. He can sit patiently in a restaurant for food, and wait his turn. His main issues are still with rewinding videos to certain areas over and over, rewinding cassetee tpaas he uses to practice his speech with, pushing the DVD buttons, still saying FBI and warning, DIsny, pixar, etc. His fixations arent evedant except on the computer at school where he troes to sneak CD's into it without permission. Im hoping we get some answers, as he sint potty trained, but we feel he need sto be with his peers. He is quite normal for being autistic or having aspergers, and can function in a normal setting 85% of the time, but he freaks out when a particular part of his routine is broken. Not sure if anyone else has this Exact same experience, but if you have a close one let me know. Thanks for listening. Debbie in land. Re: Sleep issues and sick days My son didn't sleep through the night until he was 7. There is huge laundry list of things that I tried. Here is partial list.1. A specific bedtime routine2. Just leaving the lamp on.3. Relaxation tape4. visualization techniques6. Benadryl...when I really need a night's sleep. One doctor told me to give it to every night. I found a new Doctor.He is 12 now and has no sleep issues. Some kids grow out of it eventually...I wish mine grew out of it sooner. I know how sleep deprivation can affect you.You can always call an IEP meeting to discuss how the schoool needs to accommadate him during colds to ensure that your child is getting FAPE. Missing 10 days seems to be the magic number for incidents, but some SD are more responsive then others.> I know alot of AS kids have sleep issues. We have trouble settling Zo down for the night, claims of fears and if he wakes in the night, like he did last night at 4AM he sometimes cannot get back to sleep. Any suggestions??> > Also do you all find you need to keep your kids home from school for minor illnesses like the sniffles. I have had Alonzo home for 3 days now. He was sent home from school sick after having a couple of meltdowns at school. He has had a cold and had already been complaining about his ears to the nurse earlier that morning. The social worker felt and is most likely right that his just wasn't feeling well so it lowered his tolerance for frustration. I have very sniffly coughy kids all winter. I am worried that I am going to end up having him home more than he goes to school the next few months!> > > > > > > __________________________________________________> Quote Link to comment Share on other sites More sharing options...
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