Guest guest Posted February 26, 2001 Report Share Posted February 26, 2001 Hi, Theirs this family that I babsitt. They have I think a 4th grader who doesn't have any problems, a 2nd grader that's autistic, 2 cats and a dog. Anyhow, they addopted a 3 yr old Russian Girl about 4 months ago. They know that the girl has some developmental delays and some weight and height issues- and is dealing with stranger anxiety. ===== Friends Till The End __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2001 Report Share Posted February 26, 2001 In a message dated 2/26/01 1:56:58 PM Eastern Standard Time, usercameron7001@... writes: << I look forward to reading the posts, and hearing from you all. Terri (0: >> Welcome Terri! What a wonderful family!!!! You are very blessed. Looking forward to your posts about Jordan and the gang. I'm sure you have lots of tips to share with us too! That is, if you have time to share them! You must be kept pretty busy. :-) Gail Gail, Mom to; Seth-5 ds/asd/pdd/pica, jo-8, Becky-10, -23, Jen-25, Grandma to Errick-4 and wife to -my hero Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2011 Report Share Posted October 16, 2011 Carol: Welcome to the group! My name is Liz, mom to Tori, 11 yrs old and we live in the Lehigh Valley. I am originally from NY, have no immediate family local and am 53 yrs old..so you sister and her family are not alone! =) Liz On Sun, Oct 16, 2011 at 7:54 AM, Carol wrote: > ** > > > Hi Everyone, > > My sister has an 10 year old child in the Philadelphia area. We > used to live much closer but are now in 450 miles away and I was looking for > ways to give her support and found your group. They are withdrawing from > social interactions, even from family, feeling like they have little in > common with anyone anymore. Both parents are approaching mid 50s, so energy > is waning and they are often overwhelmed with maintaining full time jobs and > caring for and helping their older sons, one a senior in high school, > the other last year of undergrad. What I am hoping to be able to do is learn > ways I can support them and also connect them with people they feel they > have more in common. Any thoughts and suggestions would be very welcomed! > Thanks! > > Carol > > -- Liz DeSantis " The person who follows the crowd will usually get no further than the crowd. The one who walks alone is likely to find himself in places no one has ever been before. " " Creativity in living is not without its attendant difficulties, for peculiarity breeds contempt. And the unfortunate thing about being ahead of your time is that when people finally realize you were right, they'll say it was obvious all along. " ---Temple Grandin " Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength. " - Reeves " Knowing trees, I understand the meaning of patience. Knowing grass, I can understand persistence. " - Hal Borland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2011 Report Share Posted October 16, 2011 Hi, We're in NJ, in the Philly 'burbs. We have 4 kids. DS10, DS8 (both have Asperger's syndrome), DS6 (our , who has DS/Autism) and a DD5. We're in our 40's but can relate to feeling very tired!!! And yes, it's hard to find people we have much in common with in terms of 's challenges, but there are always people who are kind. Sent from my iPhone > Carol: Welcome to the group! My name is Liz, mom to Tori, 11 yrs old and > we live in the Lehigh Valley. I am originally from NY, have no immediate > family local and am 53 yrs old..so you sister and her family are not alone! > =) > > > Liz > > On Sun, Oct 16, 2011 at 7:54 AM, Carol wrote: > >> ** >> >> >> Hi Everyone, >> >> My sister has an 10 year old child in the Philadelphia area. We >> used to live much closer but are now in 450 miles away and I was looking for >> ways to give her support and found your group. They are withdrawing from >> social interactions, even from family, feeling like they have little in >> common with anyone anymore. Both parents are approaching mid 50s, so energy >> is waning and they are often overwhelmed with maintaining full time jobs and >> caring for and helping their older sons, one a senior in high school, >> the other last year of undergrad. What I am hoping to be able to do is learn >> ways I can support them and also connect them with people they feel they >> have more in common. Any thoughts and suggestions would be very welcomed! >> Thanks! >> >> Carol >> >> > > > > -- > Liz DeSantis " The person who follows the crowd will usually get no further > than the crowd. The one who walks alone is likely to find himself in places > no one has ever been before. " > > " Creativity in living is not without its attendant difficulties, for > peculiarity breeds contempt. And the unfortunate thing about being ahead of > your time is that when people finally realize you were right, they'll say it > was obvious all along. " ---Temple Grandin > " Anyone can give up, it's the easiest thing in the world to do. But to hold > it together when everyone else would understand if you fell apart, that's > true strength. " - Reeves > " Knowing trees, I understand the meaning of patience. Knowing grass, I can > understand persistence. " - Hal Borland > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2011 Report Share Posted October 16, 2011 Carol, Aloha from Hawai'i. First of all, let me say that many, many of us on this list would die to have just one relative like you to show such loving and sincere support even from miles away! It is rare that our list hears from a sibling...Know that your love and support has buoyed your sister more than you will ever know. For many of us, the courage and energy to venture out into the world comes in waves. I am a single parent of a beautiful teen named Aubrey 13, who has Down syndrome, autism and is hearing impaired and who has an older sister , who is a junior in high school. I just made 56 and am doing it on my own. Barely. Your sister and I have much in common... Our withdrawal from family has come from relatives who do not sincerely make the effort to get to know the needs of and interact with my beautiful child. Too much work. Too much responsibility. Aubrey mostly signs to communicate (as you can see in the you tube link below) but none of my four brothers have learned a single sign over the years. Aubrey has so much to say and none of them care enough to listen. Aubrey is such a beautiful human being inside and out and I feel it is such a loss for my family. In Portuguese, we say " mais fica " which means MORE FOR ME! This has been the most devastating aspect of having a child with multiple disabilities. My typical daughter in high school, who understands how poorly her sister is treated (if you shun one niece, it stands to reason you will shun her sibling as well) by her own flesh and blood-has become so heartbroken that she herself has cut all ties with my brothers. No amount of therapy can ease that kind of pain. Thus we have surrounded ourselves with like-minded friends who have become our family. Your sister is Blessed to have you and is welcome to email me anytime!  Desi, and Aubrey McKenzie Mililani, Hi ________________________________ To: Sent: Sunday, October 16, 2011 1:54 AM Subject: New to Group  Hi Everyone, My sister has an 10 year old child in the Philadelphia area. We used to live much closer but are now in 450 miles away and I was looking for ways to give her support and found your group. They are withdrawing from social interactions, even from family, feeling like they have little in common with anyone anymore. Both parents are approaching mid 50s, so energy is waning and they are often overwhelmed with maintaining full time jobs and caring for and helping their older sons, one a senior in high school, the other last year of undergrad. What I am hoping to be able to do is learn ways I can support them and also connect them with people they feel they have more in common. Any thoughts and suggestions would be very welcomed! Thanks! Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2011 Report Share Posted October 16, 2011 Desi, & nbsp; & nbsp;I cried and laughed and cried again!! & nbsp;Her signing is amazing!! Aubrey is BEAUTIFUL!!!!! GORGEOUS!!! And most definitely TALENTED! What a sweet angel. & nbsp;Please give her a hug for me!!! & nbsp; Lots of love, Sent from my Palm Pre on the Now Network from Sprint On Oct 16, 2011 12:14 PM, Desi McKenzie & lt;desimckenzie@... & gt; wrote: & nbsp; Carol, Aloha from Hawai'i. First of all, let me say that many, many of us on this list would die to have just one relative like you to show such loving and sincere support even from miles away! It is rare that our list hears from a sibling...Know that your love and support has buoyed your sister more than you will ever know. For many of us, the courage and energy to venture out into the world comes in waves. I am a single parent of a beautiful teen named Aubrey 13, who has Down syndrome, autism and is hearing impaired and who has an older sister , who is a junior in high school. I just made 56 and am doing it on my own. Barely. Your sister and I have much in common... Our withdrawal from family has come from relatives who do not sincerely make the effort to get to know the needs of and interact with my beautiful child. Too much work. Too much responsibility. Aubrey mostly signs to communicate (as you can see in the you tube link below) but none of my four brothers have learned a single sign over the years. Aubrey has so much to say and none of them care enough to listen. Aubrey is such a beautiful human being inside and out and I feel it is such a loss for my family. In Portuguese, we say " mais fica " which means MORE FOR ME! This has been the most devastating aspect of having a child with multiple disabilities. My typical daughter in high school, who understands how poorly her sister is treated (if you shun one niece, it stands to reason you will shun her sibling as well) by her own flesh and blood-has become so heartbroken that she herself has cut all ties with my brothers. No amount of therapy can ease that kind of pain. Thus we have surrounded ourselves with like-minded friends who have become our family. Your sister is Blessed to have you and is welcome to email me anytime! & nbsp; Desi, and Aubrey McKenzie Mililani, Hi ________________________________ From: Carol & lt;bexpressa2003@... & gt; To: Sent: Sunday, October 16, 2011 1:54 AM Subject: New to Group & nbsp; Hi Everyone, My sister has an 10 year old child in the Philadelphia area. We used to live much closer but are now in 450 miles away and I was looking for ways to give her support and found your group. They are withdrawing from social interactions, even from family, feeling like they have little in common with anyone anymore. Both parents are approaching mid 50s, so energy is waning and they are often overwhelmed with maintaining full time jobs and caring for and helping their older sons, one a senior in high school, the other last year of undergrad. What I am hoping to be able to do is learn ways I can support them and also connect them with people they feel they have more in common. Any thoughts and suggestions would be very welcomed! Thanks! Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2011 Report Share Posted October 16, 2011 Hi Carol: you and your sister are most welcome on this list. I no longer live in PA, but lived in Chester County before we all retired to the North GA mountains. We moved to Chester County specifically because there were APS in the vicinity for our son when we realized that public school would not be an option. We found that help for our son - who was ages 10-20 while we lived in PA, were found thru the county mental health/mental retardation board in the county. I made sure that I got myself on the committee so I would understand how things worked. While my son was still in school (he ended up going to ELWYN in Delaware County - paid for by combined SCx and State), he received a sum of money for monethly 'respite-habilitation " which gave our family a break from constant child monitoring and helped get im out in the community without us. On Sun, Oct 16, 2011 at 7:54 AM, Carol wrote: > ** > > > Hi Everyone, > > My sister has an 10 year old child in the Philadelphia area. We > used to live much closer but are now in 450 miles away and I was looking for > ways to give her support and found your group. They are withdrawing from > social interactions, even from family, feeling like they have little in > common with anyone anymore. Both parents are approaching mid 50s, so energy > is waning and they are often overwhelmed with maintaining full time jobs and > caring for and helping their older sons, one a senior in high school, > the other last year of undergrad. What I am hoping to be able to do is learn > ways I can support them and also connect them with people they feel they > have more in common. Any thoughts and suggestions would be very welcomed! > Thanks! > > Carol > > -- Sara- different pathways lead to Nirvana. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2011 Report Share Posted October 16, 2011 Oh - I forgot in welcoming you: we have 6 children, 4 adopted. Elie is our youngest son, and we adopted hiom at 9 months knowing he had DS - the ASD was a later present. On Sun, Oct 16, 2011 at 1:14 PM, Desi McKenzie wrote: > ** > > > Carol, > > Aloha from Hawai'i. First of all, let me say that many, many of us on this > list would die to have just one relative like you to show such loving and > sincere support even from miles away! It is rare that our list hears from a > sibling...Know that your love and support has buoyed your sister more than > you will ever know. > > For many of us, the courage and energy to venture out into the world comes > in waves. I am a single parent of a beautiful teen named Aubrey 13, who has > Down syndrome, autism and is hearing impaired and who has an older sister > , who is a junior in high school. I just made 56 and am doing it on my > own. Barely. Your sister and I have much in common... > > Our withdrawal from family has come from relatives who do not sincerely > make the effort to get to know the needs of and interact with my beautiful > child. Too much work. Too much responsibility. Aubrey mostly signs to > communicate (as you can see in the you tube link below) but none of my four > brothers have learned a single sign over the years. Aubrey has so much to > say and none of them care enough to listen. Aubrey is such a beautiful human > being inside and out and I feel it is such a loss for my family. In > Portuguese, we say " mais fica " which means MORE FOR ME! > > This has been the most devastating aspect of having a child with multiple > disabilities. My typical daughter in high school, who understands how poorly > her sister is treated (if you shun one niece, it stands to reason you will > shun her sibling as well) by her own flesh and blood-has become so > heartbroken that she herself has cut all ties with my brothers. No amount of > therapy can ease that kind of pain. Thus we have surrounded ourselves with > like-minded friends who have become our family. > > Your sister is Blessed to have you and is welcome to email me anytime! > > > > Desi, and Aubrey McKenzie > Mililani, Hi > > ________________________________ > > To: > Sent: Sunday, October 16, 2011 1:54 AM > Subject: New to Group > > > > Hi Everyone, > > My sister has an 10 year old child in the Philadelphia area. We > used to live much closer but are now in 450 miles away and I was looking for > ways to give her support and found your group. They are withdrawing from > social interactions, even from family, feeling like they have little in > common with anyone anymore. Both parents are approaching mid 50s, so energy > is waning and they are often overwhelmed with maintaining full time jobs and > caring for and helping their older sons, one a senior in high school, > the other last year of undergrad. What I am hoping to be able to do is learn > ways I can support them and also connect them with people they feel they > have more in common. Any thoughts and suggestions would be very welcomed! > Thanks! > > Carol > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2011 Report Share Posted October 16, 2011 I wish we had " respite-habilitation " here in NJ. Sent from my iPhone > Hi Carol: you and your sister are most welcome on this list. > > I no longer live in PA, but lived in Chester County before we all retired > to the North GA mountains. We moved to Chester County specifically because > there were APS in the vicinity for our son when we realized that public > school would not be an option. > > We found that help for our son - who was ages 10-20 while we lived in PA, > were found thru the county mental health/mental retardation board in the > county. I made sure that I got myself on the committee so I would > understand how things worked. > > While my son was still in school (he ended up going to ELWYN in Delaware > County - paid for by combined SCx and State), he received a sum of money for > monethly 'respite-habilitation " which gave our family a break from constant > child monitoring and helped get im out in the community without us. > > On Sun, Oct 16, 2011 at 7:54 AM, Carol wrote: > > > ** > > > > > > Hi Everyone, > > > > My sister has an 10 year old child in the Philadelphia area. We > > used to live much closer but are now in 450 miles away and I was looking for > > ways to give her support and found your group. They are withdrawing from > > social interactions, even from family, feeling like they have little in > > common with anyone anymore. Both parents are approaching mid 50s, so energy > > is waning and they are often overwhelmed with maintaining full time jobs and > > caring for and helping their older sons, one a senior in high school, > > the other last year of undergrad. What I am hoping to be able to do is learn > > ways I can support them and also connect them with people they feel they > > have more in common. Any thoughts and suggestions would be very welcomed! > > Thanks! > > > > Carol > > > > > > -- > Sara- different pathways lead to Nirvana. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2011 Report Share Posted October 16, 2011 Thru your county or Community services board or even try thru UCP. There is ususally some way to get it. Even in GA, beefore we qualified for MEdicaide waiver, we were able to get $2500 a year to use for that service. It is worth searching for - a ssanity saver. > ** > > > I wish we had " respite-habilitation " here in NJ. > > > > Sent from my iPhone > > > > > > Hi Carol: you and your sister are most welcome on this list. > > > > I no longer live in PA, but lived in Chester County before we all retired > > to the North GA mountains. We moved to Chester County specifically > because > > there were APS in the vicinity for our son when we realized that public > > school would not be an option. > > > > We found that help for our son - who was ages 10-20 while we lived in PA, > > were found thru the county mental health/mental retardation board in the > > county. I made sure that I got myself on the committee so I would > > understand how things worked. > > > > While my son was still in school (he ended up going to ELWYN in Delaware > > County - paid for by combined SCx and State), he received a sum of money > for > > monethly 'respite-habilitation " which gave our family a break from > constant > > child monitoring and helped get im out in the community without us. > > > > On Sun, Oct 16, 2011 at 7:54 AM, Carol <bexpressa2003@... > >wrote: > > > > > ** > > > > > > > > > > Hi Everyone, > > > > > > My sister has an 10 year old child in the Philadelphia area. > We > > > used to live much closer but are now in 450 miles away and I was > looking for > > > ways to give her support and found your group. They are withdrawing > from > > > social interactions, even from family, feeling like they have little in > > > common with anyone anymore. Both parents are approaching mid 50s, so > energy > > > is waning and they are often overwhelmed with maintaining full time > jobs and > > > caring for and helping their older sons, one a senior in high > school, > > > the other last year of undergrad. What I am hoping to be able to do is > learn > > > ways I can support them and also connect them with people they feel > they > > > have more in common. Any thoughts and suggestions would be very > welcomed! > > > Thanks! > > > > > > Carol > > > > > > > > > > -- > > Sara- different pathways lead to Nirvana. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2011 Report Share Posted October 16, 2011 Not sure what UCP is. We're NJ. I'm working with the DDD to get out-of-home respite care once a month, on Saturdays. Hoping to also get someone to come do ABA with him but that's a bit harder. Sent from my iPhone > Thru your county or Community services board or even try thru UCP. There is > ususally some way to get it. Even in GA, beefore we qualified for MEdicaide > waiver, we were able to get $2500 a year to use for that service. It is > worth searching for - a ssanity saver. > > > > > ** > > > > > > I wish we had " respite-habilitation " here in NJ. > > > > > > > > Sent from my iPhone > > > > > > > > > > > Hi Carol: you and your sister are most welcome on this list. > > > > > > I no longer live in PA, but lived in Chester County before we all retired > > > to the North GA mountains. We moved to Chester County specifically > > because > > > there were APS in the vicinity for our son when we realized that public > > > school would not be an option. > > > > > > We found that help for our son - who was ages 10-20 while we lived in PA, > > > were found thru the county mental health/mental retardation board in the > > > county. I made sure that I got myself on the committee so I would > > > understand how things worked. > > > > > > While my son was still in school (he ended up going to ELWYN in Delaware > > > County - paid for by combined SCx and State), he received a sum of money > > for > > > monethly 'respite-habilitation " which gave our family a break from > > constant > > > child monitoring and helped get im out in the community without us. > > > > > > On Sun, Oct 16, 2011 at 7:54 AM, Carol <bexpressa2003@... > > >wrote: > > > > > > > ** > > > > > > > > > > > > > > Hi Everyone, > > > > > > > > My sister has an 10 year old child in the Philadelphia area. > > We > > > > used to live much closer but are now in 450 miles away and I was > > looking for > > > > ways to give her support and found your group. They are withdrawing > > from > > > > social interactions, even from family, feeling like they have little in > > > > common with anyone anymore. Both parents are approaching mid 50s, so > > energy > > > > is waning and they are often overwhelmed with maintaining full time > > jobs and > > > > caring for and helping their older sons, one a senior in high > > school, > > > > the other last year of undergrad. What I am hoping to be able to do is > > learn > > > > ways I can support them and also connect them with people they feel > > they > > > > have more in common. Any thoughts and suggestions would be very > > welcomed! > > > > Thanks! > > > > > > > > Carol > > > > > > > > > > > > > > -- > > > Sara- different pathways lead to Nirvana. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2011 Report Share Posted October 16, 2011 UCP= united Cerebal Palsy - but they service all groups. their family camps are the best - lots of staff so you can really relax. > ** > > > Not sure what UCP is. We're NJ. I'm working with the DDD to get out-of-home > respite care once a month, on Saturdays. Hoping to also get someone to come > do ABA with him but that's a bit harder. > > > > Sent from my iPhone > > > > > Thru your county or Community services board or even try thru UCP. There > is > > ususally some way to get it. Even in GA, beefore we qualified for > MEdicaide > > waiver, we were able to get $2500 a year to use for that service. It is > > worth searching for - a ssanity saver. > > > > On Sun, Oct 16, 2011 at 6:12 PM, Cookson > wrote: > > > > > ** > > > > > > > > > > I wish we had " respite-habilitation " here in NJ. > > > > > > > > > > > > Sent from my iPhone > > > > > > > > > > > > > > > > Hi Carol: you and your sister are most welcome on this list. > > > > > > > > I no longer live in PA, but lived in Chester County before we all > retired > > > > to the North GA mountains. We moved to Chester County specifically > > > because > > > > there were APS in the vicinity for our son when we realized that > public > > > > school would not be an option. > > > > > > > > We found that help for our son - who was ages 10-20 while we lived in > PA, > > > > were found thru the county mental health/mental retardation board in > the > > > > county. I made sure that I got myself on the committee so I would > > > > understand how things worked. > > > > > > > > While my son was still in school (he ended up going to ELWYN in > Delaware > > > > County - paid for by combined SCx and State), he received a sum of > money > > > for > > > > monethly 'respite-habilitation " which gave our family a break from > > > constant > > > > child monitoring and helped get im out in the community without us. > > > > > > > > On Sun, Oct 16, 2011 at 7:54 AM, Carol < > bexpressa2003@... > > > >wrote: > > > > > > > > > ** > > > > > > > > > > > > > > > > > > Hi Everyone, > > > > > > > > > > My sister has an 10 year old child in the Philadelphia > area. > > > We > > > > > used to live much closer but are now in 450 miles away and I was > > > looking for > > > > > ways to give her support and found your group. They are withdrawing > > > from > > > > > social interactions, even from family, feeling like they have > little in > > > > > common with anyone anymore. Both parents are approaching mid 50s, > so > > > energy > > > > > is waning and they are often overwhelmed with maintaining full time > > > jobs and > > > > > caring for and helping their older sons, one a senior in > high > > > school, > > > > > the other last year of undergrad. What I am hoping to be able to do > is > > > learn > > > > > ways I can support them and also connect them with people they feel > > > they > > > > > have more in common. Any thoughts and suggestions would be very > > > welcomed! > > > > > Thanks! > > > > > > > > > > Carol > > > > > > > > > > > > > > > > > > -- > > > > Sara- different pathways lead to Nirvana. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2011 Report Share Posted October 16, 2011 There's a CP-run " mom's day out " which is the respite we're trying to get. The DDD has to refer us. <red tape ugh> I wish there were someone I could hire (with no $$!) to take over 's mealtimes. A successful meal in this house is one where doesn't yell at anyone, takes more than two bites without prompting (not even in a row) and finishes in under an hour. I am so envious of families who can relax together in the evenings...it just isn't happening here. Sent from my iPhone > UCP= united Cerebal Palsy - but they service all groups. their family > camps are the best - lots of staff so you can really relax. > > > > > ** > > > > > > Not sure what UCP is. We're NJ. I'm working with the DDD to get out-of-home > > respite care once a month, on Saturdays. Hoping to also get someone to come > > do ABA with him but that's a bit harder. > > > > > > > > Sent from my iPhone > > > > > > > > > Thru your county or Community services board or even try thru UCP. There > > is > > > ususally some way to get it. Even in GA, beefore we qualified for > > MEdicaide > > > waiver, we were able to get $2500 a year to use for that service. It is > > > worth searching for - a ssanity saver. > > > > > > On Sun, Oct 16, 2011 at 6:12 PM, Cookson > > wrote: > > > > > > > ** > > > > > > > > > > > > > > I wish we had " respite-habilitation " here in NJ. > > > > > > > > > > > > > > > > Sent from my iPhone > > > > > > > > > > > > > > > > > > > > > Hi Carol: you and your sister are most welcome on this list. > > > > > > > > > > I no longer live in PA, but lived in Chester County before we all > > retired > > > > > to the North GA mountains. We moved to Chester County specifically > > > > because > > > > > there were APS in the vicinity for our son when we realized that > > public > > > > > school would not be an option. > > > > > > > > > > We found that help for our son - who was ages 10-20 while we lived in > > PA, > > > > > were found thru the county mental health/mental retardation board in > > the > > > > > county. I made sure that I got myself on the committee so I would > > > > > understand how things worked. > > > > > > > > > > While my son was still in school (he ended up going to ELWYN in > > Delaware > > > > > County - paid for by combined SCx and State), he received a sum of > > money > > > > for > > > > > monethly 'respite-habilitation " which gave our family a break from > > > > constant > > > > > child monitoring and helped get im out in the community without us. > > > > > > > > > > On Sun, Oct 16, 2011 at 7:54 AM, Carol < > > bexpressa2003@... > > > > >wrote: > > > > > > > > > > > ** > > > > > > > > > > > > > > > > > > > > > > Hi Everyone, > > > > > > > > > > > > My sister has an 10 year old child in the Philadelphia > > area. > > > > We > > > > > > used to live much closer but are now in 450 miles away and I was > > > > looking for > > > > > > ways to give her support and found your group. They are withdrawing > > > > from > > > > > > social interactions, even from family, feeling like they have > > little in > > > > > > common with anyone anymore. Both parents are approaching mid 50s, > > so > > > > energy > > > > > > is waning and they are often overwhelmed with maintaining full time > > > > jobs and > > > > > > caring for and helping their older sons, one a senior in > > high > > > > school, > > > > > > the other last year of undergrad. What I am hoping to be able to do > > is > > > > learn > > > > > > ways I can support them and also connect them with people they feel > > > > they > > > > > > have more in common. Any thoughts and suggestions would be very > > > > welcomed! > > > > > > Thanks! > > > > > > > > > > > > Carol > > > > > > > > > > > > > > > > > > > > > > -- > > > > > Sara- different pathways lead to Nirvana. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2011 Report Share Posted October 16, 2011 Hi Carol, My name is (26yrs.) I'm mom to Elias who is 6 years old he is my only child (Down Syndrome & Autism). I don't have much family around but the ones I have I just started to try to reconnect with because since my child was born things happened and it was not possible for me to take him to other peoples home. One because he was getting sick all the time and I had to withdraw from people, because he cried over most sounds, because he would get overwhelmed around people coming over, and so many more things. He has no friends and no family that he is currently connected with, but we are in the process of changing that I hope. Now that we are one year into ABA I'm able to control some of his unwanted behaviors. I do tell friends and family he can break things tell them as much as I can on what can happen. I started telling friends and family I will go over but if my son get aggressive I will have to leave and they knew I was not trying to be rude just trying to get my son to adapt to new settings, and it's hard because we have only a few families that can understand this or are willing to try to work with our family. Welcome to our group this is that place were we understand and are understood ) Desi, Is this your daughter on youtube? It's so beautiful, I'm showing this to my son maybe he can learn it and we can sign it this Christmas ) > > Carol, > > Aloha from Hawai'i. First of all, let me say that many, many of us on this list would die to have just one relative like you to show such loving and sincere support even from miles away! It is rare that our list hears from a sibling...Know that your love and support has buoyed your sister more than you will ever know. > > For many of us, the courage and energy to venture out into the world comes in waves. I am a single parent of a beautiful teen named Aubrey 13, who has Down syndrome, autism and is hearing impaired and who has an older sister , who is a junior in high school. I just made 56 and am doing it on my own. Barely. Your sister and I have much in common... > > Our withdrawal from family has come from relatives who do not sincerely make the effort to get to know the needs of and interact with my beautiful child. Too much work. Too much responsibility. Aubrey mostly signs to communicate (as you can see in the you tube link below) but none of my four brothers have learned a single sign over the years. Aubrey has so much to say and none of them care enough to listen. Aubrey is such a beautiful human being inside and out and I feel it is such a loss for my family. In Portuguese, we say " mais fica " which means MORE FOR ME! > > This has been the most devastating aspect of having a child with multiple disabilities. My typical daughter in high school, who understands how poorly her sister is treated (if you shun one niece, it stands to reason you will shun her sibling as well) by her own flesh and blood-has become so heartbroken that she herself has cut all ties with my brothers. No amount of therapy can ease that kind of pain. Thus we have surrounded ourselves with like-minded friends who have become our family. > > Your sister is Blessed to have you and is welcome to email me anytime! > >  > > Desi, and Aubrey McKenzie > Mililani, Hi > > > > > ________________________________ > > To: > Sent: Sunday, October 16, 2011 1:54 AM > Subject: New to Group > > >  > Hi Everyone, > > My sister has an 10 year old child in the Philadelphia area. We used to live much closer but are now in 450 miles away and I was looking for ways to give her support and found your group. They are withdrawing from social interactions, even from family, feeling like they have little in common with anyone anymore. Both parents are approaching mid 50s, so energy is waning and they are often overwhelmed with maintaining full time jobs and caring for and helping their older sons, one a senior in high school, the other last year of undergrad. What I am hoping to be able to do is learn ways I can support them and also connect them with people they feel they have more in common. Any thoughts and suggestions would be very welcomed! Thanks! > > Carol > > > Quote Link to comment Share on other sites More sharing options...
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