Guest guest Posted November 23, 2008 Report Share Posted November 23, 2008 Welcome to the list, . You will love it here. There is SO much info !! And people are very nce.My name is , and I live in Rye, NY (recently moved from Brazil, where we come from). I have 3 daughters, Luiza, 15, Cecilia, 14 and , 4, who has DS. I am still getting familiar with the services provided by the education system in the US. Right now is not doing any therapies because we are waiting for the meeting where we will discuss what she will do. She goes to the local regular nursery 4 times a week. Back in Brazil she went to school since she was 2 and had private OT, PT and ST. Bue I personally believe that full inclusion is the best therapy. is very hypothonic and walked when 27 months. I actually thought that she would take longer. She is a joy to be with, very funny and good-humored. She still puts everything n he mouth and keeps having rashes around the mouth because of that. At least she is not leaking cars or the floor anymore...Cheers,Pathaveyouhadyourhugstoday escreveu: Hello! My name is & my Husbands name is . We live in Southern Calif. We have a 11 yr old that has High Functioning Autism () and we have a baby boy that is 18mo and has Down Syndrome (Elijah). We are learning so much about Down. We registered with the Regional Center for early intervention when Elijah was born. We have not had any heart problems or major health problems as of yet. Elijah is doing quite well so far. He can sign (ASL) 7 words and say 7- 10 words fairly clear. However, he does have a stigmatism and does not see well and it is a constant battle to keep his glasses on! We had In- Home OT & play therapist for a year. He was crawling normally and is pulling himself up and cruising the couch and tables. We requested to go to a center based OT and play therapy. We now have a wonderful OT with ALOT of equipment, hope he will walk soon! The play therapy, "Mommy & ME" did not go so well, when they handed my (then) 14 mo old glue and glitter, I said, "Hold up!" "I don't think that is a good idea!". I tried to stay a couple of months later just to see, but quickly realized that it was strictly a pre school setting and Elijah was not ready for that...he was just trying to eat and teeth on everything for heavens sake! We brought the play therapist back in our home and when they sent me a 20 year old girl with little experience with children and NO experience with Down I had requested the director come to our home! Now she comes twice a week. However, as nice as she is, everything she does with him, we already do, so I continued my search for a center based program for infants and toddlers! Three months later after MANY calls (the Regional Center did not know of any others!) and talking to MANY people I finally found one that I am going to tour this coming week. The other good news is that our local community college is starting the exact same kind of program we need in Jan, they described it as Gymboree meets therapy with OT, PT, oral stimulation, speech, signing, socialization and fun & songs...can't wait...I'm on the list! Also, we just changed Pediatricians, I had to provide the DS growth chart to the last Dr who said there wasn't one! Speaking of the Dr, Elijah is still spitting up regularly and often seems to choke or gag briefly for no apparent reason, I thought he was to old to do that (could be teething & saliva?), spoke to his OT & she said to request a GI Dr to see if he has reflux or?? So we did, hopefully we will get an appointment soon. Well, that's where we are so far with our little snuggle bug. As you can see we stay busy as the rest of you trying to figure this all out & don't even get me started on the HF Autism issues...that's a different group! Will be so glad to have others to talk to who have been there, done that! We look forward to reading your questions and answers and will certainly have some of our own as we learn more! Veja quais são os assuntos do momento no Yahoo! + Buscados: Top 10 - Celebridades - Música - Esportes Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2008 Report Share Posted November 23, 2008 Hello , My name is . I am in the Active Duty Air Force in South Korea right now. I personally do not have a child with Down Syndrome, but my baby sister (who will be 20 this year) does. I signed up for the group to offer my parents more information about what is going on in the DS community. I am also doing a Speech, for my Speech class on individuals with Down Syndrome. From what I can remember of Sara when she was little, she did fairly well. She is on the higher end of cognitive functioning. She started school at 3 years old, she went to a deaf class. She learned how to speak through signing, and to this day does interprative movement with Church to songs and LOVES it. She also had to get glasses when she was 3 years old, and while she was on the bus riding to school one day she decided to throw them out the window. I'll never forget how mad my mom was. LOL. She went to normal day-care and has been interacting with the inclusion program all of her school years. It has really helped her I think. Her maturity level is pretty good, but of course not on par with all of her peers. She will be graduating from High School this year and is really looking forward to doing other things when school is done. I'm sure it's scary for her, since that is all she has known all of her life. I wish you all the luck in the new things you have found. My sister learned most of her stuff from her big 3 sisters. We were constantly reading to her, singing to her, and playing with her. Who would have thought today that her favorite things to do are read, sing and dance. I look forward to hearing more about Elijah and his triumphs throughout his life. Take care and Happy Thanksgiving, * What seems like the end may really be a new beginning** Be happy and thankful for all that you have always.... Subject: [DownSyndromeInfoExchange] New Member!To: DownSyndromeInfoExchange Date: Sunday, November 23, 2008, 3:25 PM Hello! My name is & my Husbands name is . We live in Southern Calif. We have a 11 yr old that has High Functioning Autism () and we have a baby boy that is 18mo and has Down Syndrome (Elijah).We are learning so much about Down. We registered with the Regional Center for early intervention when Elijah was born. We have not had any heart problems or major health problems as of yet. Elijah is doing quite well so far. He can sign (ASL) 7 words and say 7-10 words fairly clear. However, he does have a stigmatism and does not see well and it is a constant battle to keep his glasses on! We had In-Home OT & play therapist for a year. He was crawling normally and is pulling himself up and cruising the couch and tables. We requested to go to a center based OT and play therapy. We now have a wonderful OT with ALOT of equipment, hope he will walk soon! The play therapy, "Mommy & ME" did not go so well, when they handed my (then) 14 mo old glue and glitter, I said, "Hold up!" "I don't think that is a good idea!". I tried to stay a couple of months later just to see, but quickly realized that it was strictly a pre school setting and Elijah was not ready for that...he was just trying to eat and teeth on everything for heavens sake! We brought the play therapist back in our home and when they sent me a 20 year old girl with little experience with children and NO experience with Down I had requested the director come to our home! Now she comes twice a week. However, as nice as she is, everything she does with him, we already do, so I continued my search for a center based program for infants and toddlers! Three months later after MANY calls (the Regional Center did not know of any others!) and talking to MANY people I finally found one that I am going to tour this coming week. The other good news is that our local community college is starting the exact same kind of program we need in Jan, they described it as Gymboree meets therapy with OT, PT, oral stimulation, speech, signing, socialization and fun & songs...can' t wait...I'm on the list! Also, we just changed Pediatricians, I had to provide the DS growth chart to the last Dr who said there wasn't one! Speaking of the Dr, Elijah is still spitting up regularly and often seems to choke or gag briefly for no apparent reason, I thought he was to old to do that (could be teething & saliva?), spoke to his OT & she said to request a GI Dr to see if he has reflux or?? So we did, hopefully we will get an appointment soon. Well, that's where we are so far with our little snuggle bug. As you can see we stay busy as the rest of you trying to figure this all out & don't even get me started on the HF Autism issues...that' s a different group! Will be so glad to have others to talk to who have been there, done that! We look forward to reading your questions and answers and will certainly have some of our own as we learn more! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2008 Report Share Posted November 23, 2008 Hi - Welcome to the listserv…..nice to meet you;-) My husband and I have 7 kids ranging in age from 25-10 yrs. Danny, who has Ds, is our youngest. Sounds like Elijah is doing very well.. Any pictures that you would like to share? We love to see pictures. KathyR haveyouhadyourhugstoday escreveu: Hello! My name is & my Husbands name is . We live in Southern Calif. We have a 11 yr old that has High Functioning Autism () and we have a baby boy that is 18mo and has Down Syndrome (Elijah). We are learning so much about Down. We registered with the Regional Center for early intervention when Elijah was born. We have not had any heart problems or major health problems as of yet. Elijah is doing quite well so far. He can sign (ASL) 7 words and say 7- 10 words fairly clear. However, he does have a stigmatism and does not see well and it is a constant battle to keep his glasses on! We had In- Home OT & play therapist for a year. He was crawling normally and is pulling himself up and cruising the couch and tables. We requested to go to a center based OT and play therapy. We now have a wonderful OT with ALOT of equipment, hope he will walk soon! The play therapy, " Mommy & ME " did not go so well, when they handed my (then) 14 mo old glue and glitter, I said, " Hold up! " " I don't think that is a good idea! " . I tried to stay a couple of months later just to see, but quickly realized that it was strictly a pre school setting and Elijah was not ready for that...he was just trying to eat and teeth on everything for heavens sake! We brought the play therapist back in our home and when they sent me a 20 year old girl with little experience with children and NO experience with Down I had requested the director come to our home! Now she comes twice a week. However, as nice as she is, everything she does with him, we already do, so I continued my search for a center based program for infants and toddlers! Three months later after MANY calls (the Regional Center did not know of any others!) and talking to MANY people I finally found one that I am going to tour this coming week. The other good news is that our local community college is starting the exact same kind of program we need in Jan, they described it as Gymboree meets therapy with OT, PT, oral stimulation, speech, signing, socialization and fun & songs...can't wait...I'm on the list! Also, we just changed Pediatricians, I had to provide the DS growth chart to the last Dr who said there wasn't one! Speaking of the Dr, Elijah is still spitting up regularly and often seems to choke or gag briefly for no apparent reason, I thought he was to old to do that (could be teething & saliva?), spoke to his OT & she said to request a GI Dr to see if he has reflux or?? So we did, hopefully we will get an appointment soon. Well, that's where we are so far with our little snuggle bug. As you can see we stay busy as the rest of you trying to figure this all out & don't even get me started on the HF Autism issues...that's a different group! Will be so glad to have others to talk to who have been there, done that! We look forward to reading your questions and answers and will certainly have some of our own as we learn more! Veja quais são os assuntos do momento no Yahoo! + Buscados: Top 10 - Celebridades - Música - Esportes Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2008 Report Share Posted November 24, 2008 Welcome to the list! I live in Southern California--Orange County to be exact. If you are in Orange County there is ICEC and UCP is just opening a program that is parent participation too. Other than those two I don't know of any, but your case worker should for sure know of all the programs around. My son's 15 now, so it's been a while for us, but we loved ICEC. They sometimes did some weird stuff, but NOW years later the 'why' makes more sense than it did at the time. ESPECIALLY with the weird sensory stuff they did with our kids. , Mom to 15, DS, Southern California"People who say it cannot be done should not interrupt those who are doing it!"-------Chas Diagnosis Down Syndrome: A Site of Hope for New Parents or Parents with a Prenatal Diagnosishttp://www.leeworks.net/DDS/What to Say to Parents of a Child with a Diagnosishttp://www.leeworks.net/DDS/speech.html [DownSyndromeInfoExchange] New Member! Hello! My name is & my Husbands name is . We live in Southern Calif. We have a 11 yr old that has High Functioning Autism () and we have a baby boy that is 18mo and has Down Syndrome (Elijah).We are learning so much about Down. We registered with the Regional Center for early intervention when Elijah was born. We have not had any heart problems or major health problems as of yet. Elijah is doing quite well so far. He can sign (ASL) 7 words and say 7-10 words fairly clear. However, he does have a stigmatism and does not see well and it is a constant battle to keep his glasses on! We had In-Home OT & play therapist for a year. He was crawling normally and is pulling himself up and cruising the couch and tables. We requested to go to a center based OT and play therapy. We now have a wonderful OT with ALOT of equipment, hope he will walk soon! The play therapy, "Mommy & ME" did not go so well, when they handed my (then) 14 mo old glue and glitter, I said, "Hold up!" "I don't think that is a good idea!". I tried to stay a couple of months later just to see, but quickly realized that it was strictly a pre school setting and Elijah was not ready for that...he was just trying to eat and teeth on everything for heavens sake! We brought the play therapist back in our home and when they sent me a 20 year old girl with little experience with children and NO experience with Down I had requested the director come to our home! Now she comes twice a week. However, as nice as she is, everything she does with him, we already do, so I continued my search for a center based program for infants and toddlers! Three months later after MANY calls (the Regional Center did not know of any others!) and talking to MANY people I finally found one that I am going to tour this coming week. The other good news is that our local community college is starting the exact same kind of program we need in Jan, they described it as Gymboree meets therapy with OT, PT, oral stimulation, speech, signing, socialization and fun & songs...can't wait...I'm on the list! Also, we just changed Pediatricians, I had to provide the DS growth chart to the last Dr who said there wasn't one! Speaking of the Dr, Elijah is still spitting up regularly and often seems to choke or gag briefly for no apparent reason, I thought he was to old to do that (could be teething & saliva?), spoke to his OT & she said to request a GI Dr to see if he has reflux or?? So we did, hopefully we will get an appointment soon. Well, that's where we are so far with our little snuggle bug. As you can see we stay busy as the rest of you trying to figure this all out & don't even get me started on the HF Autism issues...that's a different group! Will be so glad to have others to talk to who have been there, done that! We look forward to reading your questions and answers and will certainly have some of our own as we learn more! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2008 Report Share Posted November 24, 2008 Welcome to the group ! My brother with DS is 3 ½ years old. We just recently moved from southern California (Lancaster area) to Northeast Oklahoma. We do all my brother’s therapies at home and have never had any professional PT or OT. He has done quite well. It also helps that he is #10 of 11 kids, so he has plenty of motivation to do things J. His slowest area is his speech, so I hope to be able to take him to an oral motor therapist sometime here. In the meantime, we’ll do what we can at home following SRJ’s OMT. You’ll like it here, I’m sure! Qadoshyah Book - Down Syndrome: What You CAN Do www.gotdownsyndrome.net/Book/whatyoucandobook.html Buy it from ~ http://stores.lulu.com/gotdownsyndrome.net From: DownSyndromeInfoExchange [mailto:DownSyndromeInfoExchange ] On Behalf Of haveyouhadyourhugstoday Sent: Sunday, November 23, 2008 4:25 PM To: DownSyndromeInfoExchange Subject: [DownSyndromeInfoExchange] New Member! Hello! My name is & my Husbands name is . We live in Southern Calif. We have a 11 yr old that has High Functioning Autism () and we have a baby boy that is 18mo and has Down Syndrome (Elijah). We are learning so much about Down. We registered with the Regional Center for early intervention when Elijah was born. We have not had any heart problems or major health problems as of yet. Elijah is doing quite well so far. He can sign (ASL) 7 words and say 7- 10 words fairly clear. However, he does have a stigmatism and does not see well and it is a constant battle to keep his glasses on! We had In- Home OT & play therapist for a year. He was crawling normally and is pulling himself up and cruising the couch and tables. We requested to go to a center based OT and play therapy. We now have a wonderful OT with ALOT of equipment, hope he will walk soon! The play therapy, " Mommy & ME " did not go so well, when they handed my (then) 14 mo old glue and glitter, I said, " Hold up! " " I don't think that is a good idea! " . I tried to stay a couple of months later just to see, but quickly realized that it was strictly a pre school setting and Elijah was not ready for that...he was just trying to eat and teeth on everything for heavens sake! We brought the play therapist back in our home and when they sent me a 20 year old girl with little experience with children and NO experience with Down I had requested the director come to our home! Now she comes twice a week. However, as nice as she is, everything she does with him, we already do, so I continued my search for a center based program for infants and toddlers! Three months later after MANY calls (the Regional Center did not know of any others!) and talking to MANY people I finally found one that I am going to tour this coming week. The other good news is that our local community college is starting the exact same kind of program we need in Jan, they described it as Gymboree meets therapy with OT, PT, oral stimulation, speech, signing, socialization and fun & songs...can't wait...I'm on the list! Also, we just changed Pediatricians, I had to provide the DS growth chart to the last Dr who said there wasn't one! Speaking of the Dr, Elijah is still spitting up regularly and often seems to choke or gag briefly for no apparent reason, I thought he was to old to do that (could be teething & saliva?), spoke to his OT & she said to request a GI Dr to see if he has reflux or?? So we did, hopefully we will get an appointment soon. Well, that's where we are so far with our little snuggle bug. As you can see we stay busy as the rest of you trying to figure this all out & don't even get me started on the HF Autism issues...that's a different group! Will be so glad to have others to talk to who have been there, done that! We look forward to reading your questions and answers and will certainly have some of our own as we learn more! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2008 Report Share Posted November 24, 2008 And if you want to get up to speed quickly on things that you can do to help Elijah, buy a copy of the book Qadoshyah and her mom just compiled..pretty amazing resource. Book - Down Syndrome: What You CAN Do www.gotdownsyndrome.net/Book/whatyoucandobook.html Buy it from ~ http://stores.lulu.com/gotdownsyndrome.net From: DownSyndromeInfoExchange [mailto:DownSyndromeInfoExchange ] On Behalf Of Qadoshyah Sent: Monday, November 24, 2008 10:14 PM To: DownSyndromeInfoExchange Subject: RE: [DownSyndromeInfoExchange] New Member! Welcome to the group ! My brother with DS is 3 ½ years old. We just recently moved from southern California (Lancaster area) to Northeast Oklahoma. We do all my brother’s therapies at home and have never had any professional PT or OT. He has done quite well. It also helps that he is #10 of 11 kids, so he has plenty of motivation to do things J. His slowest area is his speech, so I hope to be able to take him to an oral motor therapist sometime here. In the meantime, we’ll do what we can at home following SRJ’s OMT. You’ll like it here, I’m sure! Qadoshyah Book - Down Syndrome: What You CAN Do www.gotdownsyndrome.net/Book/whatyoucandobook.html Buy it from ~ http://stores.lulu.com/gotdownsyndrome.net From: DownSyndromeInfoExchange [mailto:DownSyndromeInfoExchange ] On Behalf Of haveyouhadyourhugstoday Sent: Sunday, November 23, 2008 4:25 PM To: DownSyndromeInfoExchange Subject: [DownSyndromeInfoExchange] New Member! Hello! My name is & my Husbands name is . We live in Southern Calif. We have a 11 yr old that has High Functioning Autism () and we have a baby boy that is 18mo and has Down Syndrome (Elijah). We are learning so much about Down. We registered with the Regional Center for early intervention when Elijah was born. We have not had any heart problems or major health problems as of yet. Elijah is doing quite well so far. He can sign (ASL) 7 words and say 7- 10 words fairly clear. However, he does have a stigmatism and does not see well and it is a constant battle to keep his glasses on! We had In- Home OT & play therapist for a year. He was crawling normally and is pulling himself up and cruising the couch and tables. We requested to go to a center based OT and play therapy. We now have a wonderful OT with ALOT of equipment, hope he will walk soon! The play therapy, " Mommy & ME " did not go so well, when they handed my (then) 14 mo old glue and glitter, I said, " Hold up! " " I don't think that is a good idea! " . I tried to stay a couple of months later just to see, but quickly realized that it was strictly a pre school setting and Elijah was not ready for that...he was just trying to eat and teeth on everything for heavens sake! We brought the play therapist back in our home and when they sent me a 20 year old girl with little experience with children and NO experience with Down I had requested the director come to our home! Now she comes twice a week. However, as nice as she is, everything she does with him, we already do, so I continued my search for a center based program for infants and toddlers! Three months later after MANY calls (the Regional Center did not know of any others!) and talking to MANY people I finally found one that I am going to tour this coming week. The other good news is that our local community college is starting the exact same kind of program we need in Jan, they described it as Gymboree meets therapy with OT, PT, oral stimulation, speech, signing, socialization and fun & songs...can't wait...I'm on the list! Also, we just changed Pediatricians, I had to provide the DS growth chart to the last Dr who said there wasn't one! Speaking of the Dr, Elijah is still spitting up regularly and often seems to choke or gag briefly for no apparent reason, I thought he was to old to do that (could be teething & saliva?), spoke to his OT & she said to request a GI Dr to see if he has reflux or?? So we did, hopefully we will get an appointment soon. Well, that's where we are so far with our little snuggle bug. As you can see we stay busy as the rest of you trying to figure this all out & don't even get me started on the HF Autism issues...that's a different group! Will be so glad to have others to talk to who have been there, done that! We look forward to reading your questions and answers and will certainly have some of our own as we learn more! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2008 Report Share Posted November 25, 2008 Every time I click on the links I get an error page...I wonder if there's a better link? I'd love to get a copy of your book, Qadoshyah! Thanks, Kris From: Kathy Ratkiewicz Sent: Monday, November 24, 2008 9:37 PM To: DownSyndromeInfoExchange Subject: RE: [DownSyndromeInfoExchange] New Member! And if you want to get up to speed quickly on things that you can do to help Elijah, buy a copy of the book Qadoshyah and her mom just compiled..pretty amazing resource. Book - Down Syndrome: What You CAN Do www.gotdownsyndrome.net/Book/whatyoucandobook.html Buy it from ~ http://stores.lulu.com/gotdownsyndrome.net From: DownSyndromeInfoExchange [mailto:DownSyndromeInfoExchange ] On Behalf Of QadoshyahSent: Monday, November 24, 2008 10:14 PMTo: DownSyndromeInfoExchange Subject: RE: [DownSyndromeInfoExchange] New Member! Welcome to the group ! My brother with DS is 3 ½ years old. We just recently moved from southern California (Lancaster area) to Northeast Oklahoma. We do all my brother’s therapies at home and have never had any professional PT or OT. He has done quite well. It also helps that he is #10 of 11 kids, so he has plenty of motivation to do things J. His slowest area is his speech, so I hope to be able to take him to an oral motor therapist sometime here. In the meantime, we’ll do what we can at home following SRJ’s OMT. You’ll like it here, I’m sure! Qadoshyah Book - Down Syndrome: What You CAN Do www.gotdownsyndrome.net/Book/whatyoucandobook.html Buy it from ~ http://stores.lulu.com/gotdownsyndrome.net From: DownSyndromeInfoExchange [mailto:DownSyndromeInfoExchange ] On Behalf Of haveyouhadyourhugstodaySent: Sunday, November 23, 2008 4:25 PMTo: DownSyndromeInfoExchange Subject: [DownSyndromeInfoExchange] New Member! Hello! My name is & my Husbands name is . We live in Southern Calif. We have a 11 yr old that has High Functioning Autism () and we have a baby boy that is 18mo and has Down Syndrome (Elijah).We are learning so much about Down. We registered with the Regional Center for early intervention when Elijah was born. We have not had any heart problems or major health problems as of yet. Elijah is doing quite well so far. He can sign (ASL) 7 words and say 7-10 words fairly clear. However, he does have a stigmatism and does not see well and it is a constant battle to keep his glasses on! We had In-Home OT & play therapist for a year. He was crawling normally and is pulling himself up and cruising the couch and tables. We requested to go to a center based OT and play therapy. We now have a wonderful OT with ALOT of equipment, hope he will walk soon! The play therapy, "Mommy & ME" did not go so well, when they handed my (then) 14 mo old glue and glitter, I said, "Hold up!" "I don't think that is a good idea!". I tried to stay a couple of months later just to see, but quickly realized that it was strictly a pre school setting and Elijah was not ready for that...he was just trying to eat and teeth on everything for heavens sake! We brought the play therapist back in our home and when they sent me a 20 year old girl with little experience with children and NO experience with Down I had requested the director come to our home! Now she comes twice a week. However, as nice as she is, everything she does with him, we already do, so I continued my search for a center based program for infants and toddlers! Three months later after MANY calls (the Regional Center did not know of any others!) and talking to MANY people I finally found one that I am going to tour this coming week. The other good news is that our local community college is starting the exact same kind of program we need in Jan, they described it as Gymboree meets therapy with OT, PT, oral stimulation, speech, signing, socialization and fun & songs...can't wait...I'm on the list! Also, we just changed Pediatricians, I had to provide the DS growth chart to the last Dr who said there wasn't one! Speaking of the Dr, Elijah is still spitting up regularly and often seems to choke or gag briefly for no apparent reason, I thought he was to old to do that (could be teething & saliva?), spoke to his OT & she said to request a GI Dr to see if he has reflux or?? So we did, hopefully we will get an appointment soon. Well, that's where we are so far with our little snuggle bug. As you can see we stay busy as the rest of you trying to figure this all out & don't even get me started on the HF Autism issues...that's a different group! Will be so glad to have others to talk to who have been there, done that! We look forward to reading your questions and answers and will certainly have some of our own as we learn more! Quote Link to comment Share on other sites More sharing options...
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