Any questions for a DS sis?

jellybean0110 · October 2010

Hi ladies,

I've been frequenting the TTGP and BOTB boards lately because I am TTC. I thought for a change I would check out some other boards. I am 25 and my brother has downs -- age 22. I lived (and am still living) almost my whole life with a special needs sibling. My family has had some challenges but we have been rewarded with an angel who brings us all so much joy!

Anyways, I don't remember much from early childhood other than playing with him as if he were a normal kid. But what I can offer is some insight into what adolesence and adulthood is like. So if anyone has any questions or needs support from me I'd be happy to help

akimbo · October 2010

How generous of you - thanks!

What did your parents do to help you understand your brother has different needs?

In retrospect, was there anything you wish your parents did/or didn't do for you that was very helpful/not helpful?

Do you feel like you had an undue amount of responsibility for your brother? did/do you have any resentment about it?

We worry about the sibling relationship, we worry that only having one 'typically developing' sibling isn't fair....

Thanks again.

skittles_123 · October 2010

My oldest ds has ASD, not DS, but I think just being a sister of a special needs in itself can provide a lot of useful information for many of us! I have a typical 2 yr old dd and many of my questions were already addressed by the pp, so I will just wait to see what your response is to that.

jellybean0110 · October 2010

akimbo:

How generous of you - thanks! Glad to help!!

What did your parents do to help you understand your brother has different needs? I remember them telling me that God had made him very special and that he would need extra attention. I remember just accepting it and not being upset or anything. My parents tell me I was jealous but that it was normal older sibling jealousy stuff like still wanting to sleep in a crib, drink out of a bottle, etc. Nothing DS related.

In retrospect, was there anything you wish your parents did/or didn't do for you that was very helpful/not helpful? Not that I can remember from childhood but now that I'm older I wish they wouldn't be hesitant to ask DH and I to let him stay over more. He is comparable to a normal a 4-5 year old so he needs 24 hour care. I know it is rough on my parents to have a child who will never move out and they need a break sometimes. We keep him every once in a while when both are out of town (parents are divorced), but I think they feel like it burdens DH & I to ask. DH is very supportive and loving too, and even though I've told my parents I enjoy having him around they still are hesitant to ask for help.

Do you feel like you had an undue amount of responsibility for your brother? did/do you have any resentment about it? No. I always treated him like a normal sibling and I think my parents did a great job of giving us both alot of attention -- just different types of attention. DH and I have both accepted that he may have to come live with us when my parents are elderly. I guess some people might see that as undue responsibility but I really don't mind at all. I would never send him to live anywhere as long as DH and I are able to take him. And I can't wait until he is an uncle! My nieces (ages 3, 8 & 10) on DH side love playing with him. He's just a big kid!

We worry about the sibling relationship, we worry that only having one 'typically developing' sibling isn't fair....I think my parents worried alot about me too. They also worried about him starting school and the reactions of other kids. We never had any issues with bullying. In fact quite the opposite...everyone loves my brother and he is very well known (we live in a small town). He is completely unaware of anything being unfair. He just rolls with the punches, worry free most of the time! I feel like I was given better opportunities later in life because my parents could afford to give me better things that would never be available for him since they only had one child to pay for...like a car, college degree, prom dresses, wedding...etc.

Thanks again.

Anytime! PM me if you every have any other questions or need support ((hugs))

TriciaJoy · October 2010

I don't have a child with DS, but for various reasons (long story) we're at risk for having a child with special needs and recently the high risk OB told us that having another child was risking our current son's (who has special needs, but so far is expected to someday outgrow them) future. So I read this with great interest.

I just wanted to say thank you very much for sharing. It gave me a lot of hope.

cooker71 · October 2010

Thank you so much for sharing. Really, it's wonderful. Nora is getting to an age where she may start asking questions and we've been wondering how to deal with some of this.

akimbo · October 2010

Thank you SO very much for answering. Really. Thank you.

soontobeahigh · October 2010

Thanks! I think that helps a lot of us that still have infants/toddlers with SNs. That was a big concern of mine and my husbands when we found out about DD having Ds, her brothers. They are 5 and almost 3 and they love her so much, b/c she is their sister and nothing else!

I hope you will come around and share some stories of your childhood and now with your brother.

jellybean0110 · October 2010

I'm glad I was able to give some hope! I'll visit this board more frequently from now on. Wink

skittles_123 · November 2010

Just wanted to send another thank you your way. I too would love to have you hang out with us every once in a while. I am very hyperaware of making sure my dd gets the same amount of attention as ds, so hopefully she will appreciate that someday Smile

. It is so funny because she is already telling him to "stop flapping your hands," when he gets excited (the whole asd stimming thing), and she is only two! She is miss bossy!

KMom14 · November 2010

Wow, I love this post! My son has DS and we are definitely having more kids, so I love hearing your perspective. So encouraging and positive! Thanks!

JenMon514 · November 2010

For what it's worth I am 27 and my older brother also has DS. He's 31 now and has an amazing life. (Also, I have a twin and my parents got through it all just fine)

My husband and I are TTC and I've told several people that DS is actually not a diagnosis that scares me, having lived through it. My brother has had a great childhood and adult life. As a child he went to summer camp, played baseball, basketball and soccer. Even now at 31 he has a more active social life than I do. Granted my mom goes most places with him (but partially because she's become such good friends with the other parents) he has social dances every other Friday night, goes to dinner with a group of friends every Thursday, bowling league and out to lunch every saturday, they put on a Christmas play and summer play every year (though he's not much of an "actor" he loves every second of it and takes rehersals VERY seriously. I swear most nights when I call home they are out doing something fun with his friends. He reads very well, knows more about politics and current events than I'd ever pretend to know and works part time at a daycare. He spends the rest of the week at a life skills workshop. A bus picks him up and drops him off, but when he gets home from work he's home alone til my parents get home and he gets himself a snack and catches up on his soap operas. He even has a girlfriend!!

I have no idea what my life would have been like without an older brother with down syndrome, but I am glad I never had to find out. I wouldn't change a thing.

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