Re: [SPAM] 3 Qs

[Guest guest]

Hi Ann,

1. As far as I know most kids with DS have the simian crease. HOWEVER, so do allot of typical people. Its just one of those common things. It also does not really matter < as far as I know> what type of DS he has. Its still DS. Some might have more information on that.. and may be it matters nutritionally?? but as far as I know its not a big difference.

2. In the US they have a campaign called "Back TO Sleep" Where they suggest that all babies sleep on their back unless they have some other medical condition that might require them to do something else.

I know of NO such thing as keeping the body " in line " with the head. I did place Sam on her back at night.. But during the day I did let her sleep on her sides. I did this to keep her head from getting flat in one place.. but she breastfed too.. so I also held her alot and had her in a sling alot too. And since she nursed.. she slept in my bed alot Her head was rarely "in line" with the rest of her body. I am not telling you this man is wrong.. I just never heard of it.

3. I have five other children ( is my sixth) When Sam was born they were 17 yrs, 8 yrs, 4 yrs, 3 yrs., and 2 yrs.

They were all in the delivery room to greet their sis into the world. The 17 yr old heard and knew as we found out. The 8 yr old did too.. but she had questions. I took her into the hall later and talked to her about it I told her her sis would be OK..but she might need some extra protection. ( I was in Momma bear mode.. I was afraid people would take her away from me and institutionalize her.. I was a bit paranoid.. I am a post partum anxiety sufferer ) The on e thing I FORGOT to tell her was that she could not " Catch it" so my 8 yr old washed her hands alot.. eventually she asked and we told her she could not catch it. The main goal of the conversation was it was just part of who is.. she has blue eyes, chubby cheeks, the Arnsparger family head, and she has DS.

The others just sort of " caught on" . They have questions now and then. But... DS is a common theme in our house. We are active with the DS association, we read alot about it. But at the same time its not a " big deal" in our house. Its hard to explain. I have caught my children pretending their baby dolls have DS. My son esp.. he carries his " baby brother" around.. his baby brother Jon has DS. But he does everything Bubba does.. climbs trees ETC. I have not stopped them from pretending this. My now 4 yr old girl pretends she has twins.. one has DS. So.. in short.. just tell em " matter of fact" " Umar has Down syndrome.. its nothing to worry about.. but he might need a little more help doing xyz ".

So my opinion.. is just tell them matter of fact. Its nothing to be hidden or ashamed of.. and I am not accusing you of feeling that way... I am just saying.. its OK to celebrate ALL of who your Sweet Umar is. I am not sure of your Faith either? DO you Believe in GOD? This played a big role in it for us too. God gave us our for a special purpose. She has a special soul just like us.. and she also has a special purpose too. She was Knitted by GOD just like everyone else. Everyone is Different.. but we are all the same. Its sort of a mystery.

Ok.. I am rambling now.. Give that sweet Umar a kiss for me.

STeph

[sPAM][DownSyndromeInfoExchange] 3 Qs

Yesterday I took my son Umar to a non profit clinic in Bahrain where we were taught some physical activities to do with my son. The man is not a Dr. but a special education teacher who used to work w/ the local Down Syndrome Association who now has his own center that focuses on infants and physical exercises. I have two qs about some things he said

1. He said due to Umars appearance he would consider him as having Mosaic DS unless told otherwise. We actually don't know either way because our DR never told us any differences, or specifics. I've read that with Mosaic DS children tend to have less physical features but can that be said of children with regular (don't know the term to use here) DS ? I mean should I expect all children with regular DS to have the single line across their palm?

2. The man made the suggestion that Umar should be put to sleep on his back at night and to ensure his head is straight w/ the rest of his body. How we would ensure he doesn't move his head is any ones guess, but is there some reason for this? Or is this just this guys suggestion?At this point I place Umar on his side as I'm paranoid that he will vomit and difficulties will arise from that. (I''ve been like this with all my children, especially since my first son had reflux problems that freaked me out especially when it came to sleeping and being able to spit up w/ no difficulty) Not that Umar spits up much at all, but this is my hang up. Is there something to the head being kept straight w/ the body as he sleeps?

3. Beyond my visit to this clinic I've been wondering what to tell my other children. No I haven't told them anything yet and I'm really not sure what to say at this point. A friend suggested that the moment will present itself. But I'd hate for a lot of time to go by waiting for a moment and than it becomes too much of a shock for my children. Especially my oldest daughter who is highly sensitive (she'll be the nurse in the family) to medical problems which she equates with death due to events in her young life. Eventually I have to say something but in a way I don't want it to be a major issue, or something which changes their interaction with Umar. So any thoughts on this would be great.

Ann_____________________________________________________________Low Cost Government Loans. Click Now!

[Guest guest]

Thank you to everyone who responded.

I'm not sure if Mosaic means much of anything, wasn't even aware that there were differences in DS until I read it online. Of course the dr didn't tell me much of anything at all, not much for information and help here. So if it really doesn't make a difference I wouldn't do futher testing at this point.

For sleeping if there are no specific benefits for Umar to be placed on his back with his head kept inline with his body than I'll continue to place him on his side. I am aware of the big campaigns to place children on their back and no co-sleeping as well. I had three of my children while we were in the US so I remember all the lectures. I still prefer side sleeping if not every gasp from his bassinet would have me jumping from the bed thinking he's drowning from his own spit up. (all parents have their quirks I suppose)

For telling the children, my husband wants to wait a few months, not sure why. I recieved my books so they will eventually read the titles and ask (for the ones that can read and are nosey). At first I didn't say anything simply because I had no answers at all. Now I have a couple of answers and like most things I'm probably fearing it will be a bigger deal to my kids than it will actually end up being. The one thing that really concerns me in this regard is the cultural ideas that they will have to deal with when it comes to their brother having DS. I'm so hoping they don't have to face any of the really outrageous thinking that many have here anytime soon.

Thanks

Ann

_____________________________________________________________Click here to find the rental car that fits your needs.

[Guest guest]

Hi My understanding is that if your child has mosaic Down syndrome there about 10% chance of having another child with it in the future. I also remember that the cognitive issues can be milder in mosaic compared to nonmosaic. Michele"nzinghas@..." wrote: Thank you to everyone who responded. I'm not sure if Mosaic means much of anything, wasn't even aware that there were differences in DS until I read it online. Of

course the dr didn't tell me much of anything at all, not much for information and help here. So if it really doesn't make a difference I wouldn't do futher testing at this point. For sleeping if there are no specific benefits for Umar to be placed on his back with his head kept inline with his body than I'll continue to place him on his side. I am aware of the big campaigns to place children on their back and no co-sleeping as well. I had three of my children while we were in the US so I remember all the lectures. I still prefer side sleeping if not every gasp from his bassinet would have me jumping from the bed thinking he's drowning from his own spit up. (all parents have their quirks I suppose) For telling the children, my husband wants to wait a few months, not sure why. I recieved my books so they will eventually read the titles and ask (for the ones that can read and are nosey). At first I didn't say anything simply because I had no answers

at all. Now I have a couple of answers and like most things I'm probably fearing it will be a bigger deal to my kids than it will actually end up being. The one thing that really concerns me in this regard is the cultural ideas that they will have to deal with when it comes to their brother having DS. I'm so hoping they don't have to face any of the really outrageous thinking that many have here anytime soon. Thanks Ann_____________________________________________________________Click here to find the rental car that fits your needs.

[Guest guest]

Hi My understanding is that if your child has mosaic Down syndrome there about 10% chance of having another child with it in the future. I also remember that the cognitive issues can be milder in mosaic compared to nonmosaic. Michele"nzinghas@..." wrote: Thank you to everyone who responded. I'm not sure if Mosaic means much of anything, wasn't even aware that there were differences in DS until I read it online. Of

course the dr didn't tell me much of anything at all, not much for information and help here. So if it really doesn't make a difference I wouldn't do futher testing at this point. For sleeping if there are no specific benefits for Umar to be placed on his back with his head kept inline with his body than I'll continue to place him on his side. I am aware of the big campaigns to place children on their back and no co-sleeping as well. I had three of my children while we were in the US so I remember all the lectures. I still prefer side sleeping if not every gasp from his bassinet would have me jumping from the bed thinking he's drowning from his own spit up. (all parents have their quirks I suppose) For telling the children, my husband wants to wait a few months, not sure why. I recieved my books so they will eventually read the titles and ask (for the ones that can read and are nosey). At first I didn't say anything simply because I had no answers

at all. Now I have a couple of answers and like most things I'm probably fearing it will be a bigger deal to my kids than it will actually end up being. The one thing that really concerns me in this regard is the cultural ideas that they will have to deal with when it comes to their brother having DS. I'm so hoping they don't have to face any of the really outrageous thinking that many have here anytime soon. Thanks Ann_____________________________________________________________Click here to find the rental car that fits your needs.

[Guest guest]

I told my kids while I was pg. They accepted it by saying "it's no big deal, she's our sister". Well then 4 years later I told them that I was pg again and their new little sister would be special needs but this one had Down syndrome. They reacted by saying "cool, I know some kids in school with DS and they are really cool". yes my kids were lots older than 5 or 6 when I told them, but they could have reacted as my neighbors did, which they now have nothing to do with us or my girls. It's sad. Also maybe my kids accepted it because my sister is Trisomy 10q and they knew alot about her and spent time with her.

Siblings are very accepting of brothers and sisters too. So tell them and don't worry or hide anything from them. I think it's harder for parents to accept a child with special needs than the kids themselves.

Re: [sPAM][DownSyndromeInfoExchange] 3 Qs

Thank you to everyone who responded.

I'm not sure if Mosaic means much of anything, wasn't even aware that there were differences in DS until I read it online. Of course the dr didn't tell me much of anything at all, not much for information and help here. So if it really doesn't make a difference I wouldn't do futher testing at this point.

For sleeping if there are no specific benefits for Umar to be placed on his back with his head kept inline with his body than I'll continue to place him on his side. I am aware of the big campaigns to place children on their back and no co-sleeping as well. I had three of my children while we were in the US so I remember all the lectures. I still prefer side sleeping if not every gasp from his bassinet would have me jumping from the bed thinking he's drowning from his own spit up. (all parents have their quirks I suppose)

For telling the children, my husband wants to wait a few months, not sure why. I recieved my books so they will eventually read the titles and ask (for the ones that can read and are nosey). At first I didn't say anything simply because I had no answers at all. Now I have a couple of answers and like most things I'm probably fearing it will be a bigger deal to my kids than it will actually end up being. The one thing that really concerns me in this regard is the cultural ideas that they will have to deal with when it comes to their brother having DS. I'm so hoping they don't have to face any of the really outrageous thinking that many have here anytime soon.

Thanks

Ann_____________________________________________________________Click here to find the rental car that fits your needs.