Guest guest Posted June 9, 1999 Report Share Posted June 9, 1999 Hi everyone. My name is and my husband and I adopted when he was 51/2 years old. He had been institutionalized at birth. He had no firm dx when we adopted him. We knew that he had had heart surge when he was less than a year old, respiratory problem that resulted in a trach which was removed when he was 2. They told us he was deaf, blind in his left eye due to coloboma, he couldn't walk, communicate, had his stomach divided which had recently been reversed but he was still being tube fed and had to be taught to eat by mouth. We were taking a little girl out of the hospital to be a foster child within our home and was in the same ward. Over a two week period of time of spending time at the hospital learning how to care for our foster daughter we fell in love with the little blond haired boy with the big blue eyes. It took us over a year to get him out of the institution. In Nov. of 1981 he legally became our son. Oh, those first few years. We found that our son had a very huge stubburn streak and we thank God everyday for it because I'm sure that's what helped him to survive. We went through hours of getting food into him by way of mouth. Hours of convincing him he could walk instead of being carried. Yes, the toilet was for going to the bathroom. Retrieving earmolds from the toilet happened more that I care to admit. There were many trips to the doctors and hospitals but we survived. As I sit here typing is off working at a local supermarket. He's 23 now. He has grown into a happy, kind and giving young man. It's been a long road and I can still see miles ahead of us but he is our son and we love him very much. I am looking forward to corresponeing with other parents. I feel I have alot to give as far as support to others just beginning the journey. and I are now working together to creat a deaf home where can live with other's who like himself are deaf and in need of support in living independently. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 1999 Report Share Posted June 9, 1999 , Yes, I know of HKNC, and I think that is great got to go. Having had Austin and learning/experiencing everything that goes on with Charge has changed the direction of my life. I now work at a non-profit group as a deafblind job placement specialist. This is near and dear to my heart because it gives me a real glimpse into the future for my son. It is a hard sell telling someone a deafblind individual can work - but they can! I am keeping my fingers crossed on what looks like a great opportunity for the first client I am working with. He is also a HKNC former student. I hope to get the opportunity to visit New York and stay at HKNC for a week or so this Sept. for some additional training. I have been fortuate to have great teachers help me with my child and great support. I really admire those of you who had no one in those first hard years of chaos. Obviously, you were meant to produce great things and teach others from your experience. Tell good luck in the Special Olympics! Jacque Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 1999 Report Share Posted June 10, 1999 WOW, what special people you guys are & how lucky is to have you!! You have definitely earned your WINGS, God will bless you...... LEE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 1999 Report Share Posted June 10, 1999 , Welcome to the list! Thanks for sharing your story about . It sounds like he had an awful lot of love given to him!! I'm glad you found us. Look forward to hearing from you again soon. Mom to Kennedy 16 mos old CHARGEr, 9, 8, and wife to Graeme New Brunswick, Canada Visit the " Weir's homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716 ICQ #1426476 >From: artthrob@... > > Hi everyone. My name is and my husband and >I adopted when he was 51/2 years old. He had >been institutionalized at birth. He had no firm dx when >we adopted him. We knew that he had had heart surge >when he was less than a year old, respiratory problem >that resulted in a trach which was removed when he >was 2. They told us he was deaf, blind in his left eye >due to coloboma, he couldn't walk, communicate, had his >stomach divided which had recently been reversed but he >was still being tube fed and had to be taught to eat >by mouth. We were taking a little girl out of the >hospital to be a foster child within our home and >was in the same ward. Over a two week period of time >of spending time at the hospital learning how to care >for our foster daughter we fell in love with the >little blond haired boy with the big blue eyes. >It took us over a year to get him out of the >institution. In Nov. of 1981 he legally became our >son. Oh, those first few years. We found that our >son had a very huge stubburn streak and we thank God >everyday for it because I'm sure that's what helped >him to survive. We went through hours of getting >food into him by way of mouth. Hours of convincing >him he could walk instead of being carried. Yes, the >toilet was for going to the bathroom. >Retrieving earmolds from the toilet happened more >that I care to admit. There were many trips to the >doctors and hospitals but we survived. As I sit here >typing is off working at a local supermarket. >He's 23 now. He has grown into a happy, kind and >giving young man. It's been a long road and I can >still see miles ahead of us but he is our son and we >love him very much. I am looking forward to corresponeing >with other parents. I feel I have alot to give as >far as support to others just beginning the journey. > and I are now working together to creat a >deaf home where can live with other's who like >himself are deaf and in need of support in living >independently. > > > > > > > >------------------------------------------------------------------------ >ONElist: where real people with real interests get connected. >http://www.onelist.com >Join a new list today! >------------------------------------------------------------------------ >4th International CHARGE Syndrome Conference, Houston, Texas, July >23-25, 1999. >For information about the CHARGE Syndrome Foundation or to become a member please contact marion@.... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 1999 Report Share Posted June 10, 1999 Hi , welcome to the list. Your story is truly amazing and your son is very lucky to have found you and your husband as parents!! It was meant to be the way you found each other. My daughter is 15 and wasn't diagnossed with CHARGE until she was 5 1/2. I didn't have the support of the CHARGE list until last summer and sure wish I had it sooner. It just amazes me how well you have done, all alone for all these years. I am very interested in hearing more about your son. Celeste - nne 15 artthrob@... wrote: > From: artthrob@... > > Hi everyone. My name is and my husband and > I adopted when he was 51/2 years old. He had > been institutionalized at birth. He had no firm dx when > we adopted him. We knew that he had had heart surge > when he was less than a year old, respiratory problem > that resulted in a trach which was removed when he > was 2. They told us he was deaf, blind in his left eye > due to coloboma, he couldn't walk, communicate, had his > stomach divided which had recently been reversed but he > was still being tube fed and had to be taught to eat > by mouth. We were taking a little girl out of the > hospital to be a foster child within our home and > was in the same ward. Over a two week period of time > of spending time at the hospital learning how to care > for our foster daughter we fell in love with the > little blond haired boy with the big blue eyes. > It took us over a year to get him out of the > institution. In Nov. of 1981 he legally became our > son. Oh, those first few years. We found that our > son had a very huge stubburn streak and we thank God > everyday for it because I'm sure that's what helped > him to survive. We went through hours of getting > food into him by way of mouth. Hours of convincing > him he could walk instead of being carried. Yes, the > toilet was for going to the bathroom. > Retrieving earmolds from the toilet happened more > that I care to admit. There were many trips to the > doctors and hospitals but we survived. As I sit here > typing is off working at a local supermarket. > He's 23 now. He has grown into a happy, kind and > giving young man. It's been a long road and I can > still see miles ahead of us but he is our son and we > love him very much. I am looking forward to corresponeing > with other parents. I feel I have alot to give as > far as support to others just beginning the journey. > and I are now working together to creat a > deaf home where can live with other's who like > himself are deaf and in need of support in living > independently. > > > > ------------------------------------------------------------------------ > ONElist: where real people with real interests get connected. > http://www.onelist.com > Join a new list today! > ------------------------------------------------------------------------ > 4th International CHARGE Syndrome Conference, Houston, Texas, July > 23-25, 1999. > For information about the CHARGE Syndrome Foundation or to become a member please contact marion@.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 1999 Report Share Posted June 11, 1999 Celeste, I am so glad to see that there are some parents with older kids on the list also. Please tell me a little bit about yourselves. Does nne have sight and hearing involvement? Does she use sign? If yes, what type of sign does she use, ASL or exact english? Is she oral? What kind of schooling has she had? Write when you can. I'm looking forward to communicating with you. Vicki, mom of (23) Celeste Gaspar wrote: > > > Hi , welcome to the list. Your story is truly amazing and your son is very lucky to have found you and your > husband as parents!! It was meant to be the way you found each other. My daughter is 15 and wasn't diagnossed with > CHARGE until she was 5 1/2. I didn't have the support of the CHARGE list until last summer and sure wish I had it > sooner. It just amazes me how well you have done, all alone for all these years. > > I am very interested in hearing more about your son. > > Celeste - nne 15 > > artthrob@... wrote: > > > From: artthrob@... > > > > Hi everyone. My name is and my husband and > > I adopted when he was 51/2 years old. He had > > been institutionalized at birth. He had no firm dx when > > we adopted him. We knew that he had had heart surge > > when he was less than a year old, respiratory problem > > that resulted in a trach which was removed when he > > was 2. They told us he was deaf, blind in his left eye > > due to coloboma, he couldn't walk, communicate, had his > > stomach divided which had recently been reversed but he > > was still being tube fed and had to be taught to eat > > by mouth. We were taking a little girl out of the > > hospital to be a foster child within our home and > > was in the same ward. Over a two week period of time > > of spending time at the hospital learning how to care > > for our foster daughter we fell in love with the > > little blond haired boy with the big blue eyes. > > It took us over a year to get him out of the > > institution. In Nov. of 1981 he legally became our > > son. Oh, those first few years. We found that our > > son had a very huge stubburn streak and we thank God > > everyday for it because I'm sure that's what helped > > him to survive. We went through hours of getting > > food into him by way of mouth. Hours of convincing > > him he could walk instead of being carried. Yes, the > > toilet was for going to the bathroom. > > Retrieving earmolds from the toilet happened more > > that I care to admit. There were many trips to the > > doctors and hospitals but we survived. As I sit here > > typing is off working at a local supermarket. > > He's 23 now. He has grown into a happy, kind and > > giving young man. It's been a long road and I can > > still see miles ahead of us but he is our son and we > > love him very much. I am looking forward to corresponeing > > with other parents. I feel I have alot to give as > > far as support to others just beginning the journey. > > and I are now working together to creat a > > deaf home where can live with other's who like > > himself are deaf and in need of support in living > > independently. > > > > > > > > ------------------------------------------------------------------------ > > ONElist: where real people with real interests get connected. > > http://www.onelist.com > > Join a new list today! > > ------------------------------------------------------------------------ > > 4th International CHARGE Syndrome Conference, Houston, Texas, July > > 23-25, 1999. > > For information about the CHARGE Syndrome Foundation or to become a member please contact marion@.... > > ------------------------------------------------------------------------ > ONElist: the best source for group communications. > http://www.onelist.com > Join a new list today! > ------------------------------------------------------------------------ > 4th International CHARGE Syndrome Conference, Houston, Texas, July > 23-25, 1999. > For information about the CHARGE Syndrome Foundation or to become a member please contact marion@.... Quote Link to comment Share on other sites More sharing options...
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