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Old September 2nd, 2018, 02:08 PM   #1
Katie2003
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Default Anyone have a sibling with Down Syndrome?

My parents recently adopted a beautiful 22 year old young woman that we've known her family forever, her mom is terminally ill and there are no other living relatives.

Jamie is just a beautiful sweetheart, full of hugs and kisses and smiles for everyone, very capable of doing what anyone else can, drives her own car and has just this year graduated from high school. She also has a full time job in a day care center and they just love her.

Even though we've known Jamie forever, and she's been to our house with her mom lots of times over the years, it's a unique experience having her a permanent member of our family. I'm so proud of Jamie, that I just have to share.

But I'd love to know if anyone has suggestions or thoughts on how a family can make someone like Jamie have an even more special life? She's interested in trying some college courses online in a few years but wants to take a break from classwork and studying for a while.
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Old September 3rd, 2018, 08:30 PM   #2
Second Chance
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Default Re: Anyone have a sibling with Down Syndrome?

I would say that since you have known Jamie for a very long time that just being yourself is the best way to interact with her. It seems like she is a highly functional person since she can drive and has a job, and most likely she has a solid routine.

I think the biggest problem Jamie will face is when her Mother dies. I think when that happens your family has to be very supportive of her letting her know that she has a place to stay and that you all will not bail on her. Especially since Jamie has no other family members being there for her when her Mother dies and making sure there is a seamless transition from her Mom's house to yours is what is most important when her Mother does pass away.

Last edited by Second Chance; September 3rd, 2018 at 08:48 PM.
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Old September 3rd, 2018, 08:48 PM   #3
Katie2003
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Default Re: Anyone have a sibling with Down Syndrome?

We are hoping that transitions well, Jamie's mom has been in the nursing home where my mom works for about 6 months now and they say she won't live through the holidays. However, Jamie is aware of the fact that sometimes people get so sick the doctors can't fix them and when her dad passed away several years ago, she handled it a lot better than her mom did. This is why Jamie's mom wanted the adoption finalized before she passes, and Jamie has time to settle in with my family, which is where we are at now.

All the paperwork has been taken care of with her mom's stuff and my parents have already helped Jamie rent her mom's house, fully furnished, to a young couple from our church. But of course, no one can predict how Jamie will actually behave at the time her mom is gone.

My mom has been letting Jamie sleep with her mom at the nursing home sometimes, and there have also been several videos made of Jamie's mom talking to her and of the two of them together that she will always have in the future. We honestly don't know of anything else that we could be doing. My mom's a psychologist so she should have a pretty good understanding of behavior, but no one can predict that.

Jamie told the judge at her formal adoption that she understands the situation and she wants to be a part of our family so she will have a forever home. We brought Jamie's mom there in a wheelchair so she could also tell the judge this was what she wanted for Jamie.
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Old September 3rd, 2018, 08:56 PM   #4
Second Chance
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Default Re: Anyone have a sibling with Down Syndrome?

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Originally Posted by Katie2003 View Post
We are hoping that transitions well, Jamie's mom has been in the nursing home where my mom works for about 6 months now and they say she won't live through the holidays. However, Jamie is aware of the fact that sometimes people get so sick the doctors can't fix them and when her dad passed away several years ago, she handled it a lot better than her mom did. This is why Jamie's mom wanted the adoption finalized before she passes, and Jamie has time to settle in with my family, which is where we are at now.

All the paperwork has been taken care of with her mom's stuff and my parents have already helped Jamie rent her mom's house, fully furnished, to a young couple from our church. But of course, no one can predict how Jamie will actually behave at the time her mom is gone.

My mom has been letting Jamie sleep with her mom at the nursing home sometimes, and there have also been several videos made of Jamie's mom talking to her and of the two of them together that she will always have in the future. We honestly don't know of anything else that we could be doing. My mom's a psychologist so she should have a pretty good understanding of behavior, but no one can predict that.

Jamie told the judge at her formal adoption that she understands the situation and she wants to be a part of our family so she will have a forever home. We brought Jamie's mom there in a wheelchair so she could also tell the judge this was what she wanted for Jamie.
At this stage I really do not think there is much more your family can do beyond what it is doing. Jamie's Mother has to do most of the work preparing her for when she does pass away, and the Mother has to do everything she can to make Jamie understand that she will be living with you folks nowadays.

I am going to assume that Jamie has her own bedroom in your house and that she has a place to park her car. More than anything I think including Jamie in household chores so that she becomes a part of the family as opposed to a guest is one great way to get her to be a part of the family. Basically, just treating her like a sibling is the way to do.

Folks with Down's Syndrome do not like change for the most part because they need certainty. Suddenly, when the Mother is gone Jamie is going to be disorientated, and she may act out in ways that are unexpected due to her grief. Since your Mother is a psychologist you all as a family should talk together to prepare yourselves for times when Jamie is not herself.

I think both Jamie and her Mother should work together to plan her funeral/memorial service and decide well ahead of time what to do with the Mother's things (dresses, personal belongings, etc.). Ideally, Jamie should only hang onto important things like family heirlooms while things like clothing should go away. However, that is something the Mother has to decide like now so that after she passes away Jamie will not try to keep everything in her bedroom. Jamie is literally going from a house to a bedroom, and I am sure there are a lifetime of things that need to downsized which will take Jamie's Mother and your Mother to sort out.

In your case, just treating Jamie as you always did is the way to go. As for the big things leave it up to the adults to sort things out. It is very good that your family is helping out Jamie so that she will not be a ward of the State when her Mother dies, and at least her Mother is dying knowing that her daughter is all right. It is so scary when a person is a parent of a special needs child and has no idea what will become of the kid after he/she dies.
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Old September 3rd, 2018, 09:07 PM   #5
Katie2003
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Default Re: Anyone have a sibling with Down Syndrome?

My parents actually brought Jamie's mom home to her own house one last time about a month ago before they got it ready to rent out. She spent the day directing us in sorting through family keepsakes and made sure that Jamie knew what the things were and why she should keep them. Almost all of Jamie's mom's clothes were donated to charity, she only kept underwear, socks, some pajamas and a dress to be buried in.

Jamie never had a whole lot of clothes, she lives a pretty simple life by her own choice since as you noted, people with Down Syndrome depend on being consistent. My big sis Megan who was moving away to college last month anyway graciously moved her own stuff out of her room a couple of weeks early and gave the room to Jamie the first day she was here. Megan won't be coming home other than over the holidays until next summer, and will share with me or my little sis while she's here at that time.

The funeral is planned and paid for in advance, which Jamie was also a part of. Her mom wanted a very simple service and that's what she made full plans for.

Jamie's biggest concern that she has been able to voice to us is that she hopes it doesn't hurt her mother too much during the time she has left. I think knowing that Jamie is in a safe place should be very comforting to her mom, she was crying at the adoption, but so were my parents, and so were me and Jamie. Try as I might, I can't begin to imagine how hard it must be for a parent of a special needs child to know they are dying and the child will be left with no living relatives. We feel blessed that Jamie's mom chose my family to be her forever home and we are trying to make things as comfortable as possible for Jamie. She actually asked to be assigned some of my sis Megan's chores now that Megan has moved away to college, and Jamie is a really hard worker who puts everything into whatever she does. I'm pretty sure that Jamie feels good about being here because she told me yesterday that she was thrilled to have sisters after having been an only child for so many years. She seems to understand what's taking place so far.

Jamie is beautifully innocent. It's impossible not to love her. But I would do anything in the world I possibly could to make her life everything it can possibly be. She says she would love to someday be married to a boy like her and have kids of her own. Is that possible? IDK, I think she will always need adult supervision, but it's something I'm pretty sure she could handle with the right support system in place. Jamie supposedly has an emotional age of about 12-13 but she knows not to do things without asking first if she's not sure about something.

Last edited by Katie2003; September 3rd, 2018 at 09:23 PM.
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Old September 3rd, 2018, 09:46 PM   #6
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Default Re: Anyone have a sibling with Down Syndrome?

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My parents actually brought Jamie's mom home to her own house one last time about a month ago before they got it ready to rent out. She spent the day directing us in sorting through family keepsakes and made sure that Jamie knew what the things were and why she should keep them. Almost all of Jamie's mom's clothes were donated to charity, she only kept underwear, socks, some pajamas and a dress to be buried in.

Jamie never had a whole lot of clothes, she lives a pretty simple life by her own choice since as you noted, people with Down Syndrome depend on being consistent. My big sis Megan who was moving away to college last month anyway graciously moved her own stuff out of her room a couple of weeks early and gave the room to Jamie the first day she was here. Megan won't be coming home other than over the holidays until next summer, and will share with me or my little sis while she's here at that time.

The funeral is planned and paid for in advance, which Jamie was also a part of. Her mom wanted a very simple service and that's what she made full plans for.

Jamie's biggest concern that she has been able to voice to us is that she hopes it doesn't hurt her mother too much during the time she has left. I think knowing that Jamie is in a safe place should be very comforting to her mom, she was crying at the adoption, but so were my parents, and so were me and Jamie. Try as I might, I can't begin to imagine how hard it must be for a parent of a special needs child to know they are dying and the child will be left with no living relatives. We feel blessed that Jamie's mom chose my family to be her forever home and we are trying to make things as comfortable as possible for Jamie. She actually asked to be assigned some of my sis Megan's chores now that Megan has moved away to college, and Jamie is a really hard worker who puts everything into whatever she does. I'm pretty sure that Jamie feels good about being here because she told me yesterday that she was thrilled to have sisters after having been an only child for so many years. She seems to understand what's taking place so far.

Jamie is beautifully innocent. It's impossible not to love her. But I would do anything in the world I possibly could to make her life everything it can possibly be. She says she would love to someday be married to a boy like her and have kids of her own. Is that possible? IDK, I think she will always need adult supervision, but it's something I'm pretty sure she could handle with the right support system in place. Jamie supposedly has an emotional age of about 12-13 but she knows not to do things without asking first if she's not sure about something.
It seems like you all have a plan, and at least there is lead time between Jamie's Mother's terminal illness and when she will actually pass on. I know that sounds cold, but what I am trying to say is that at least there is time to plan things out rather than it being chaotic when a person dies suddenly.

I can understand how Jamie could feel like she is hurting her Mother, but the reality is that the Mother is a part of the process and wants this to happen this way otherwise she could not rest in peace. At least she will know that Jamie has a future even though the Mother will not be around.

It is good that Jamie has a place to stay within your house and that your older sister was willing to pull out and give her space. More than anything a person with Down's Syndrome needs stability and a routine which she will now have. It is going to be tough going through one routine for twenty plus years only to start a new one.

As for Jamie's future life, she will have to take things one day at a time. Chances are she will never be fully independent which is why over the long-term with your family in the distant future when your parents are not able to take care of Jamie that there is a plan for her to live with one of you Sisters or be in an assisted living facility. However, that is for the distant future since she will be all right for a very long time.

Again, the most important needs that she will have right away is dealing with her Mother's death and the aftermath of knowing she is the only one in her family left. I think reassuring her that she is part of a family is the most important thing that can be done after her Mother passes away, and it will probably take a year for her to be all right.

A person with Down's Syndrome oftentimes looks at themselves as completely like anyone else and do not see the disability that we do. The result is that they will try to do things exactly as their peers without realizing that they have some unique challenges that those without disabilities do not have. All because a person has a disability does not mean they are limited, but they will be strong in particular areas in which they have to be encouraged. For example, people with Down's Syndrome do great with kids which is why she is well regarded at the day care where she is. As you and your Sisters move on with life whether it is with college, life partners, moving out on your own, etc. it is important to emphasize to Jamie that because she cannot do all those things does not mean she is "less than" or is not as good as you folks. Jamie will live her life in a different way that will be equally rewarding if that makes sense. Jamie is going to have to find her own way that is most likely going to be different than you and your Sisters which is totally fine. She might get frustrated that she cannot be just like you folks, but it is important to emphasize she does so much that even people without handicaps cannot do. It is important to point out that every single one of us have handicaps in some way whether it is emotional, mental, etc., and Jamie has to see that all because a person looks "normal" does not mean he/she actually is.

It is really amazing that Jamie has a full-time job, can drive, and is pretty independent which is a credit to her and her Mom. Hopefully, she can continue that routine for many years to come, and chances are several generation of children at her daycare will greatly benefit from her unconditional love. People with Down's Syndrome love others unconditionally without any agenda which makes them a lot better than people who do not have handicaps in some ways.
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Old September 3rd, 2018, 09:56 PM   #7
Katie2003
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Default Re: Anyone have a sibling with Down Syndrome?

Thank you so much for your well thought out and very helpful responses.

I can see that you totally understand the challenges that both Jamie and my family are facing in the short term and in the longer term. The directors of the day care center at our church have told Jamie that she can work there indefinitely, forever if she wants to.

Jamie doesn't get frustrated too often, and I think that in some ways she does realize that she's just a little bit different from everyone else. That doesn't seem to affect her being able to function pretty normally. She was aware that the school officials made a huge exception by allowing her to attend normal high school classes instead of sending her off to another larger city that's a long bus ride away for special classes. They could see she was dedicated to doing what other kids did and had no issues with letting her take classes at her own pace and didn't care that it took her until age 22 to graduate. Everyone was so proud of Jamie, in fact she attended the prom (her date was 16) and she also was voted homecoming queen! She was proud of her accomplishments and her graduating class was totally impressed with Jamie's persistence in completing her education.

I freely admit that I have serious emotional problems and see a therapist and am on really strong meds for my issues. Jamie has none of those issues, and in fact just having her here in our home has been a new source of strength for me on my bad days.

That last sentence you wrote is the perfect summary of the situation: People with Down Syndrome love others unconditionally without any agenda.

That most definitely describes my new big sister! I totally wish that I were always capable of loving like that. I can easily love Jamie unconditionally, but I've never been able to get there with everyone I interact with in life. The world would be a better place if everyone could love everyone else with that sort of love.

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Old September 5th, 2018, 07:39 PM   #8
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Default Re: Anyone have a sibling with Down Syndrome?

My bff has a brother with down syndrome. He is the cutest little boy on earth. Well, not really so little anymore, he's about to be 12...but he's always been so friendly and nice, he calls be "auntie Fiona" and he loves to show off.

But I know its not always roses dealing with someone who has such limitations, or maybe even just different ways of dealing with emotions. He gets frustrated very easily when he can't put his thoughts in order and say what he wants to say and sometimes he has a bit of a temper. We just tell him calmly to breathe slow and slow down, and try to think about what he wants to say before he says it.

Other than that he's a fairly normal kid...he goes to school (special education, obviously), he takes karate lessons (at a place especially for handicapped children), he loves Harry Potter and Transformers. I really don't treat him any differently than any other kids his age that I know.

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Old September 5th, 2018, 09:07 PM   #9
Katie2003
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Default Re: Anyone have a sibling with Down Syndrome?

That's what my mom the psychologist says, treat Jamie just like you would treat anyone else, just watch out for the times she might need a little extra help and try to solve any little problems that frustrate her. The more time I spend around Jamie, I'm even more amazed at how well she functions. Our little sis who is 11 and transgendered follows Jamie around and is quickly becoming bonded to her.

Sometimes it's because she doesn't know any different, but so far what I'm seeing is that she usually makes really good decisions and will ask if she doesn't have a clear choice for what is best to do. There is occasionally a bit of frustration about being slower than she would like to be in completing a task or understanding something new, we are pretty sure that Jamie realizes she is a bit different from everyone else but that doesn't stop her from trying and putting in her best effort.

The only real "issue" and believe me, it's not a problem for us, is that Jamie is frightened to be alone at night, even if you leave a light on in her room and her door wide open. Almost all of her life she slept with her mom in the same bed. So she always asks one of us to sleep with her, or else she'll just come and get in bed with one of us at bedtime. Usually it's me or our little sis, but if dad's working a midnight shift she might also ask to sleep with mom. We don't mind at all, everyone in my family are good cuddlers and if that's what Jamie needs, we can provide that sense of security.
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Old September 28th, 2018, 02:43 AM   #10
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Default Re: Anyone have a sibling with Down Syndrome?

Were there any issues with Jamie concerning your family's naturism?
Did this come up at all during the adoption?
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Old September 28th, 2018, 08:16 PM   #11
Katie2003
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Default Re: Anyone have a sibling with Down Syndrome?

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Were there any issues with Jamie concerning your family's naturism?
Did this come up at all during the adoption?

My parents had been friends with Jamie and her mom forever, as in a long time before I was ever born. They came over to many of my parents parties with crowds of naturist friends, and sometimes just the two of them would come over to skinny dip with us in our pool that we used to have or do a cookout. So Jamie had been used to the naturist lifestyle of my family ever since she was little whenever her mom brought her over here. We also took her on trips with us several times, for up to 2 weeks at a time, and some of those trips were to naturist resorts or nude beaches.

Jamie's naked quite a bit of the time when she's home and doesn't seem to have any issues with that. In fact the first day she moved her stuff over here, she took off her clothes with the rest of us when she came in the door.

Jamie wears adult diapers partly because her mom wasn't really diligent about toilet training her, but she's able to change herself most of the time. She doesn't make BM's in them, only wets herself because she forgets to check to see if she needs to go. We've been working with her setting her watch or her phone to go off every 30 minutes as a reminder. From what my mom tells me, it's common for Down Syndrome people to have that sort of problem and they may not get the same feeling of needing to go that the rest of us do. She wears them in the daytime to go to work, and at night when she sleeps. As long as one of us is here to remind her to use the bathroom, she does fine not wearing a diaper for a few hours in the evening after she gets home from work, or all day on a weekend. But if she's not being reminded on a regular time schedule, then she needs to have the diaper on even if she's not wearing anything else.
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