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Post by Jackie on Oct 19, 2004 13:14:07 GMT -5
For some reason was thinking back to Emily's birth today and remembering how positive my mother was when Emily was diagnosed almost 25 years ago.
I am older than everyone else here...so my mom if she were still living would be 82.
In my moms era....people did NOT bring kids with DS home very often...in fact I remember them talking about a good friend of theirs who had a child with some sort of disability and had been advised "not to bring the child home from the hospital because they might get attached to it".......
So I was really amazed that she was so accepting....
But many of you now are the same age MY kids are and I am curious about how things have changed and how YOUR parents ( who are probably close to MY age) dealt with the news that their grandbaby had DS? Jackie
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Post by Mary_L. on Oct 19, 2004 13:36:47 GMT -5
My parents were totally accepting right from the begining as was my MIL (my FIL had already passed away). Now my parents were 62 and 58 years old so they may have had more accepting ideas of people with disabilitites but my MIL was 80 and she loved and accepted Patrick just as she did her other 24 grandchildren. I think she enjoyed him more because her favorite thing to do when someone had a new baby was just to hold and rock them and she was able to do this with Patrick for a longer period of time than the others. She passed away last July and at her wake Patrick leaned over to see her and I said say goodbye and he said "goodbye grandma" and then said shhh because he thought she was asleep. It was one of the saddest but sweetest things I've ever seen.
So, now that I've rambled, I guess my point is that we have been very lucky because both of our families have been very accepting of Patrick and treat him like everyone else. Mary
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Post by victday on Oct 19, 2004 13:43:32 GMT -5
Jackie, I may not be the target of your question because I am an in-between age and my mom is almost your late mom's age. I am 39 and my mom is 77. I thought my mom would be horrified and traumatized but I was so wrong; she never batted an eyelash and at one point I even thought she was in denial, so calm she was. But she wasn't in denial at all. And she is Vic's biggest cheerleader to this day.
Now I'll go into some history that you may not have been interested in, but maybe you will like hearing about it anyway. You mentioned institutionalization. For background, my mom's mother died when my mom was an infant, so she was raised by the prior generation. Count back - we're talking about people born in the 1800s in the deep south. My mom claims that she has hardly been aware of a trend toward institutionalization in her lifetime but maybe she just wasn't acquainted with many affected families in her adulthood (i.e. the institutionalization worked so well that the disabled people were fairly well hidden. Or she happened to know only people who bucked that trend.)
But she tells me that in her formative years in the South, people did not institutionalize; it simply wasn't done. Someone else told me that the trend started around WW2 and started to ease around the Kennedy years. But anyway, she told me that it was not unusual for families to have disabled people living with them; no community was free of disabled people, and they were cared for at home and worked jobs, either in the community or on farms or at home like everyone else did, according to their abilities. Some tended children and some drove mail trucks (rural roads being different from today's highways.)
She also told me that when she was having children in the 1950s and 60s, doctors did not have developmental quizzes and milestone charts as they do now, so that each child will be sent off for further diagnosis if they don't say 100 words by age 1 1/2 or dress themselves by whatever age. In fact, she tells me that the trend was for doctors to soft-pedal around any suspected disabilities in an otherwise healthy child, for fear of upsetting the parents. My mother claimed that in the 1960s in her neighborhood, a girl was pretty much diagnosed to have Down syndrome by everyone else in the neighborhood except her own mother. I would guess the child must have had decent health, and I don't know if the mother was seriously in denial or just didn't want to talk about it, but that is what my mother told me. I asked my mom, "Well, wouldn't the girl's pediatrician have told the mother?" and my mom answered that the mentality of doctors in that era was to NOT upset parents unnecessarily when they felt there was little to be done about a particular diagnosis. Attitudes toward disabilities, in other words, were much more based in practicality a century ago and that attitude persisted even throughout the trend of institutionalization that has arisen and then ebbed in the middle of the century. My husband has a 44-year-old sister with a developmental delay of unknown origin and she was raised at home despite her parents being advised not to do that, so there have always been people who did not follow the trend of the day.
I don't know what the real deal was regarding the girl in the neighborhood who had D.S. (I'm guessing the mom just didn't make a public issue out of it) but I was heartened to hear that a century ago, at least in rural Georgia, people didn't have that "better be perfect or better send them away" mentality that has already seen its heyday and really might not have been in place for very long, apparently.
*oops, I forgot to completely answer your question. My dad, sadly, is not around, although he was fascinated with the diversity of human beings and he would have enjoyed learning everything he could about the syndrome and being a zealous advocate.
My mother-in-law said, "We are devastated as we know you are too," which bothers me to this day because devastated is not how we felt. She seems very proud of and delighted with her only grandchild but she has never revisited that topic and it's like a pink elephant in the room, never mentioned, and we can't even talk about medical visits and get close to the topic before she steers it away. FIL seems unfortunately hands-off and emotionally distant.
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Post by Betty & Ian's Mom on Oct 19, 2004 14:10:24 GMT -5
Unfortunately I don't have a relationship with my parents, they have never met Ian or Betty and because of the circumstances at hand don't want them involved in any way with them.
As for my DH's family, my mother-in-law passed away 3 weeks before Ian was born. I know in my heart that she would have been very supportive for us having Betty. She never saw anyone with a disability, everybody was just another human being and just loved everybody. My father-in-law said he would support us with what ever we decided to do with our pregnancy and that Betty has ds. When we decided to continue the pregnancy, we had full support from him and and my DH's entire family as well. I only wish that my mother-in-law was still here, I know she would have just loved Betty to pieces !!!
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Post by momofrussell on Oct 19, 2004 14:34:25 GMT -5
I found out while pregnant that Russell had DS. My inlaws were VERY supportive. They never got in our way or jumped in to discuss "options" but let us bear the news and go forward. When we knew we weren't going to change anything about the pregnancy my MIL told me that she was secretly hoping we wouldn't have aborted. My MIL cherishes ALL children, disabled and non-disabled. She and my FIL are from the midwest and both came from large familes and all her siblings went on to have large families also. My MIL was not as fortunate. It took her probably 6 yrs or so to conceive and have my husband. After the birth of my husband, she was medically not able to have anymore children and had a hysterectomy. So for my inlaws, it's a personally thing not to give up ANY children and I am proud they are my inlaws. My MIL feels that ALL children are a gift from God and that Russell IS just that, like all other children. Whe Russell was born it was hard for my FIL to even pass him over to anyone else when he was holding Russell They are attached to all my kids, but Russell definately has a special place in my inlaws hearts. One of my MIL's neice's and husband had a daughter w/DS a couple years before I had Russell. She died a few months after her birth. So having Russell touched my husband's side of our family in more ways than one. My mom was very supportive also. But I am very close with my mom so I didn't doubt she would be. My mom does let all her children make their own decisions so for my mom, she actually would have supported me regardless of our decisions. That is just who my mom is. My mom is not gushy like my MIL but my mom is awesome in being there for me regardless. I have been on both sides of the coin here and my mom has ALWAYS been there no matter what decisions I have made. She doesn't put her opinions in front of our decisions or feelings. She just stands by us The best memory I have of my mom, when I told her Russell had DS is she told me if anyone could handle it, I could And she told me that God doesn't give people anything they couldn't handle. I already KNOW this but if you knew my mom, it was VERY VERY out of the norm for her to talk to me so spiritually to me. My mom believes in God but does NOT ever talk about her feelings towards God nor does she bring him up in regards to "happenings" with others like she did. I guess God wanted to use her that day to reassure me everything was to be ok. Because SHE was the one to bring it up. It was a great moment. My mom and my inlaws are all about the same age. My mom was 58 at the time I had Russell, my MIL was too, and my FIL was 56. So they grew up when life was changing. Most of my grandparents were all deceased. (I have 3 sets of grandparents) My grandpa and grandma (my mom's dad and stepmom) were in their early 80's at the time and were also very supportive and accepting of Russell. I guess everyone I grew up around and married into feels that your kids are your kids no matter what! I really don't know my dad so I don't know how he feels nor do I really care LOL. Sad but true. My dad knows Russell has DS and that I have 3 kids but has never taken an interest in my children. But that is who my dad is. And I was raised knowing this. This subject makes me think of a neighbor I met down the street a few months back. Russell just got on the bus for Summer School and rode off. This lady was walking, she was an older lady, probably in her 70's, and asked me why the bus was at my house. I told her about Russell and how he had SS. She told me her sister has DS. I think she was her younger sister. But when her mom had sis, they told mom to send her to an institution and mom decided to bring sis home instead This lady really touched me telling me all this. It was nice knowing some DIDN'T send their children away and choose to raise them with all the other siblings and not skip a beat... the way it should be! Also, if you think about it, it's a good thing that times DID change and some parents had the good sense TO bring their babies w/DS home. It's a known fact that our kids are living longer and longer then in previous decades... specially the decades far past. I know that bringing a child home and loving and nurturing him/her would help that child survive and live longer then the ones in an institution setting, so it probably helped them realize our children DO benefit from going home with mom and dad It's a proven fact with ANY baby and the ones w/DS deserve the best parental care just like any other baby.. and that would help them live WONDERFUL longer lives! Anyway.. thanks for starting this post... great topic. I love the memories Oh.. and MaryL.. your post made me cry... what a sweet post. A.
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Post by Ericsmomma on Oct 19, 2004 17:31:04 GMT -5
Jackie,
We were blessed to have the support of both our families...but we had a very unusual circumstance... After 25 years of marriage(with my ex) and adopting 3 beautiful siblings who'd a thunk I would get pregnant... I was 46 and Roy was 52. So my Mom, (who was 70yrs old) was totally thrilled...or else shocked into a stupor!! And my brother (who has since passed away from cancer) and sister were estatic...very supportive! But then remember, I didn't find out Eric had down syndrome till 3 weeks after his birth. When we did get the news, my sweet brother was the first one at my door, easing any fears I had of rejection. And the rest of both our families acted the same. And Eric is definetly the "main man" on both sides. My Dad was 73 yrs. old when I had Eric. Although we were always close when I was growing up, Dad kinda drifted away when he chose to leave my mom. I still talked to him at times, and he lived with me when he was recovering from heart surgery, but he never seemed to bond with Eric. He hardly ever asked about him when we did talk...Dad passed away last Christmas Eve...I will never understand why he was the way he was, but I still loved him deeply. His passing was very difficult for me. But the rest of the family adores Eric. He has drawn everyone closer together. He is an "UNCLE" to Tori, age 1yr and Alex,2yrs, and Justin, 9yrs. The funniest thing I remember is when Eric was first born, the nurses in the intensive care nursery would get such a kick when Roy's son-in-law, Mike, who is about 6ft-4in. would come in to visit. (Eric weighed all of 3lbs). They would laugh and say, "Eric, here comes your brother in law! It was so cute! So though we are a little unusual, we are one big, happy family... Dolly
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Post by Jackie on Oct 19, 2004 18:03:11 GMT -5
wow...some really interesting stories so far......
Jackie
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Post by christie on Oct 19, 2004 18:39:26 GMT -5
My MoM was the Best and my BEST support ;D She watched Chris everyday from when he was 6 weeks old, so I could go back to work till he was bout 4 years old. She would have watched him longer BUT Chris got to be a very active little guy and my Mom was older and not in great health then BUT I can say without a ? she loved him as much as Colin and I do. I will never forget right before she went in the hospital many years back I brought her over to see the kids and he hugged her and she cried. She said to me, Christie NOOOOOO one ever gave me such a loving hug She always was tellng people bout her grandchildren and what they were up to and Chris was right there with the rest of them ;D Even before her major stroke in the hospital she was yapping all the time to the nurses bout Kodi and Chris They truly had a very special realtionship and it makes me sad that their time together in this world was sooo short My Mom would have been 80 this year, Bless her soul. K, you guys will probably think I am nuttier then I already am BUT I tell you the morning my Mom passed away I was woken up by Chris very early in the morning running around the house turning on every and I mean every light in the house. Soon after I got the call from the hospital that my Mom passed and I am convinved if its possible for a spirit to come visit one before they pass on, my Mom did come to see Chris and he was helping her see the light Till this day whenever we pass "Granny"s house Chris says Granny OMG it just breaks my heart all these years later Colin's Mom Hmmmm lets just say, which is part of the reason we haven't seen her in years. Both Colin's Dad and my Dad had passed on before we had kids CC ~
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Post by Alice on Oct 19, 2004 18:57:18 GMT -5
Victday, I love this: "...the mentality of doctors in that era was to NOT upset parents unnecessarily..." I wish these days doctors would have just a little of that time mentality... Today's doctors should learn how to tell parents that their new born child is having some sort of problems/disabilities. The biggest shock we had from doctors. Alice
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Post by meghans_mom on Oct 20, 2004 8:45:08 GMT -5
My mom -- about 65 at the time? -- was wonderful...IS wonderful! She was sad for me...sad for what "might have been"...but so wonderful and so accepting. She is meghan's biggest fan - and they have a very special bond because she watched MM for me after I returned to work. We, too, knew about 4-5 months into the pg that MM would have DS so we had time to prepare. I never really heard one negative word - except *both sides* of the family said the same thing....when I briefly looked into adoption and found out there was a waiting list of people waiting to adopt babies w/ DS...they said "why would anyone want to adopt a child like that?" I know they didn't mean harm by it, but I was like...hey..the child "like that" is gonna be your grandbaby. My in-laws never said anything bad (other than the above comment)...they treat me like their own daughter and have been terrific. Even my grandmother, now 94 (90 at the time), never said anything...although she still does not believe that there is anything "wrong" with MM...what I mean is, she hasn't been accepting for the dx. (not that i think there is anything "wrong" with MM either...but you know what I mean). I have to say overall, everyone has been so wonderful....only one of my brothers has never acknowledged MM's DS. He never said anything to me about it after we told him, he's never said anything bad or good, she's just Meghan to him. that's about it...laurie
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Post by sunnie on Oct 20, 2004 10:44:59 GMT -5
My brother has ds, he is 24, so when i had emma, it wasn't a big deal. i learned a lot from my mom and my brother threw the years, and now that things have changed a bit regarding different myths associated with ds children, my mother is learning a little more too. My brother in laws sister who has recently passed away at 56, also was born with ds. My brother in laws mother fought with the doctor adn took her baby home. She didn't have schooling but she was taught to sew, cook, and work on the onion fields. We have come a long way since. I have a lot of respect for his mom because i am an advocate for group homes with disabled adults that were in institutions, like lechworth and wassaic. Alot of the peope still don't turn there heads when you call them by there name, because there, they were numbers. oh please, don't get me started. but anyway, i hope all of your parents are supportive, it takes off alot of the undue stress. Sunnie
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Post by hannahsmomuk on Oct 20, 2004 17:17:15 GMT -5
i met a lady who had a 55 year old son with DS and she was lovely I so admired her She said how difficult it was to bring him home as she was told he wouldn't do anything and just forget about him and now he lives in his own flat and has a job.
and now onto my parents
Well to start with the 'inlaws' were very distant and although they had pledged their support they did find it very difficult and said a few things that hurt me in the beginning, but now they are terrific. The jump at the chance to look after Hannah ( and Rebecca ) They ask if they can take her for a walk to go and visit their friends. Over time they have now mellowed shall we say. I think they really were quite frightened by it all as they knew nothing about DS
My parents on the other hand were totally brilliant to start with, were totally accepting. Loved Hannah to bits. They just couldn't get enough of her. My parents were 63 and 70 ( mom and dad ) when Hannah was born. They would help me with all the feeding issues I had, they came on holiday to help us and babysit for us so we could go out of an evening.
However now after some family issues, both my mom and dad are totally different people ( we haven't fallen out I might add ) but now we can go a whole week without even phoning and yet they always used to be on the phone.
I really don't understand it , why they have changed so much and to honest this is the first time i have ever said anything and I have spend many a night crying about it as they used to be so good. ( anyway i won't hijack the post with my ramblings )
so there thats my parents story
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Post by Connie on Oct 20, 2004 17:43:17 GMT -5
My mother who was 69 at the time Collin was born has always been totally accepting of him and they have a very special bond. She is his biggest cheerleader (besides me) and is very protective of him. She wants to jump in and defend him before she realizes that somethings that are happening to him are not because of the DS but because he is just a kid. I sometimes have to reminder her to CALM down...LOL but it's comforting to know she loves him (and all my children) so much. They only thing she said that we did not agree on (her being a very carismatic christian and me being Presbyterian) was that if I beleived enough and asked GOD that he would take the DS away and it would not be so. I had to explain to her that God created Collin the way he wanted him and he was not going to change that but he could heal his heart defect. My FIL (who is a doctor) has never said anything about Collin having DS other than...It will be OK. He has always loved him. My father passed away before any of my children where born and my MIL died when Collin was only 9 months old. But, she loved him unconditionally. Connie
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Post by MB on Oct 20, 2004 19:14:17 GMT -5
A few years before my son was born, I went to my parents and told them that I had hoped that they had made permanent arrangements for my developmentally disabled sibling. I told them that I had no patience for my sibling or for people with developmental disabilities. I was tired of trying to pretend that I liked my sibling and was scared to death that they were going to name me the guardian. I asked them to please pick one of my other brothers or sisters for the job. I wasn't proud to admit it, but I knew in my heart, I was not cut out for the job.
CAN YOU IMAGINE WHAT THEY THOUGHT WHEN THEY RECEIVED THE CALL?!!!!!
That poor baby. Why would G-d give that precious baby to her?!!! I've always thought that my son was G-d's message to me that He would decide who could handle kids with disabilities, not me.
I still chuckle to this day and love to be around other people with developmental disabilities.
And, my sibling has benefited from the out of the box thinking we have used with our son.
MB
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Post by shellk on Oct 20, 2004 19:50:40 GMT -5
I am in Florida and my Mom at the time was in Ohio, my MIL was at the hostpital the day Kourtney was born and we did not know about the DS till that day..I will say that in my room with me 2 hours after learning about Kourtney my MIL actually looked at my DH and said, "Grat how am I gonna sugr coat this for Gram.?" "And what are you going to do with her?" She was talking to my husband who was only a boyfriend at the time, and he watched as I got up out of that hospital bed and looked her square in the eye and said"Let me sugar coat something for you, get the h$#l out of here and don't ever darken my doorway again!!" She looked at me and my DH said "Ma she is not pregnant anymore, I think you should leave." We did not see her till 3 months later when Kourtney had her heart surgery and even then it was odd. But, we have come a long way since then and she is great and one of Kourtney's favorite people. My mother I called bawling after my room cleared out that day and she said to me, "Honey I know what is going on your sister called me this morning, and I want you to know that you are my strongest girl and we can handle this and everything is going to be fine." She was on a flight the next day. She lives in Florida with me now and she IS Kourtney's favorite person in the world..She TRULY loves her Nana. And so do I . I have no Father and my husband has an adoptive dad, a step dad, and a biological dad. And they are all wonderful and have been from the get go.
The one who put it best was my favorite Uncle who came to see her the first day I had her..He said to me, "Shell, our family is so out of wack, I really believe that G-d gave her to us to teach us all how to love each other again.." And the ironic part about this is that 2 years ago his brother had a little girl named Carlie who has DS also. And I am not blood related to either Unlce.
Michele
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