SIBLINGS Q for January Ask the Experts

[Guest guest]

Hi Tamar, & ,

I'll start things off with an argument (or maybe discussion is a

better word!) between my husband and I about how much to 'tell' our

15-year old son (and 's only sib) about our hopes for his level

of involvement with his Sis after we are both deceased. I want to

talk..talk..talk it through & feel better afterwards, having gotten

his input. Hubbie thinks he is too young to understand and that it

will only put worry, pressure, etc onto this fine young man's

shoulders, that being a teenager is 'enough', etc.

What do your research and/or personal experiences tell you about

how, when and how much info do adult sibs wish their parents had

conveyed to them when the sibs were younger, or while the parents

were still alive? So, if they had it to do all over again, what

would these now-adult sibs want their parents to do differently, or

what went well?

Thanks for being here & look forward to our discussion.

Laurie

[Guest guest]

Hi Laurie and everyone-

Thanks for inviting us to this. I will do my best to speak both as a

professional interested in promoting families and also as a sibling of

two young men with developmental disabilities.

In regards to your first question Laurie,

Well, there are a number of ways to address this. Broadly speaking, I

can say that researchers and experts who work with siblings point out

that nondisabled brothers and sisters often think about the long term

implications of disability at a surprisingly young age. I've heard

that children as young as 4 think about life down the road. For a

good overview of this, I would suggest Don Meyer's " Views from Our

Shoes. "

There is probably no " right " way to talk to siblings about these

issues. Though to many of us it may sound common-sense- one thing I

have heard from some parents and siblings is it generally works better

to keep the discussion age appropriate. For instance, you wouldn't

talk about the legal and financial ramifications of guardianship with

a 7 year old, but you could talk about watching out for one's brother

or sister with a disability. In many cases it is not about the amount

of information, rather, it is about how the information is presented.

Kids are curious though, and they want to know more about disability

and what it means.

With that said, many of the adult siblings I know have parents who,

with good reason, are reticent about talking about care, finances,

expectations, etc. I've heard from some of them that it would've been

easier if their parents had introduced a little at a time or had an

honest discussion about expectations down the road. One of the

toughest things I've heard is thinking Mom and Dad expected siblings

to be involved a little or minimally, but in reality finding out that

they really expected other sibling(s) to step up and be the key person

involved. So, it's really more about minimizing the " surprises " for

siblings. If parents want to get them involved it helps to foster an

environment that both gives siblings a life of their own (see Sibshops

for a good example of one way to do this) while also providing key

information that will make it easier for them to advocate later down

the road.

Parents get a lot of experience in advocating; siblings generally do not.

Best,

-