Thursday, April 23, 2009

Is this what we have to look forward to?

Ever since I read Beth's post the other day, I've been feeling sad and worried and disturbed. Is this what's going to happen over time, that my family is going to be snubbed and ignored because people feel uncomfortable about Finn? It's bad enough to realize that his ability to make friends and create a social circle isn't going to necessarily be a piece of cake, but are my other kids going to be shunned too just because their peers' families don'tItalic want to have to deal with the kid with Down syndrome? Ugh. It makes me feel sick to my stomach.

12 comments:

Laurie said...

Ive honestly never thought about that happening. I certainly would hope that's not the case. Are people really that...rude? Dont answer that...
Maybe Im naive or something, but I'd like to think this wont be the case. At least that is my hope.
And if so - screw 'em. Im sure that the people who matter will be accepting...
((Hugs))

Jen said...

The people that would do this sort of thing are what I like to call "filler people". You know, they're just there taking up space, nothing special about 'em, not very enlightened. When I feel myself getting anxious about what people think or how my son (and our entire family, for that matter) will be treated, I remind myself who we're talking about, and realize that I care not one iota what any of them think. Like Laurie, said, the ones that matter will be accepting.

Jen said...

Of course, this won't matter a bit to Eli or Cal, who as Evan's brothers will most likely have to deal with all sorts of teasing and snubbing and rejection and hatefulness. (not unlike any child or teenager, with or without a sibling with Down syndrome, actually). I guess we have to do our best to provide them with a great sense of family and loyalty and self-confidence so that they can handle it.

Tricia said...

Ditto Jen. :)

Anna Alexandrova said...

I've never had any experience with Ds before i started reading your blog, but now that i am an avid reader i will go out of my way to make contact with parents who have a child with Ds. That's because I feel more educated and more empathetic having read about your experience. So keep on blogging!

On a different note, I'd want to hang out with you and your family because you are interesting, smart and inspiring. I am sure I am not alone or atypical. Whoever does not see that or gets scared by Finn's Ds, well, you wouldn't want to hang out with them anyway!

lupers said...

Like Anna, I have limited experience with Ds but through your blog I'm constantly questioning my own assumptions and behaviors wiht regard to Ds and big families (I follow your other blog as well).

So yes, keep blogging please!

Beth said...

Lisa,
I'm so sorry I made you worry about stuff that could possibly never even happen to you and may not even be happening to me!

I'm only guessing about the snubs. Maybe people just don't like us for totally other reasons!
Also, we happen to live in a rural community where everyone has lived here for like a hundred generations back, and we're sorta new (within the last 6 years anyway), so sometimes I think people just already have their family and close friendships and don't think to include us.

ALSO, we are older than most of the families we know who have kids Sy and Jude's age, so maybe they just think we're too old to hang out with.

I dunno. Point is, don't borrow trouble. You may have an entirely different experience. And plus, I just get on the ol' blog sometimes and poop out whatever frustration is on my mind at the moment without thinking through how much it might be horrifying to a relatively new parent like yourself. I'm sorry to cause you a minute's worth of grief!

Beth said...

New parent in regards to Down syndrome, I meant.

Karen said...

Our dear boy is 6, and the youngest of 4 kids. Our oldest is 14, and her friends absolutely love Micah, Downs and all. He loves them in turn because they dote all over him. We find that our kids have MORE friends because of their brother. We're thrilled for everyone concerned.

Alisa said...

I think people are mostly ignorant, not malicious, and can really use some help to know what is possible and "normal" for a kid with DS. What has helped us (our daughter is now 6) is to give people information in non-confrontational, conversational ways. Like "We're so glad Lena was born in 2003, where she can go to school with the neighbor kids, get invited to playdates and birthdays, and be recognized for the things she is good at, instead of being shipped off or ostracized." I'm sure there are some people who only agree to my face, but as often as not, someone will blurt out "I wondered if she could do playdates" or something (ignorant, but not malicious) like that. And then we get invited over! Lena doesn't have as many playdates as some kids do, but that has more to do with our schedule and the therapies she does outside of school, than that kids don't want to play with her. We also helped the parents of kids in her class by putting together a little handout before school began. It is a Q&A about DS written in kid-friendly language, and I gave it to folks so that they had the appropriate language to discuss the causes and effects of DS-you know, like describing chromosomes as "little strings that give your body directions on how to grow" and things like that. I'm sure it educated the parents as much as it did their kids! It's packed full of inclusive language and really helped set the tone for how our daughter is treated by other families.
On a different note, check out this post where the mom is talking about getting her child to eat more textured food. http://thecarpentersx4chronicles.blogspot.com/2009/04/speechfeeding-therapy.html

starrlife said...

I've not come across anyone who specifically excluded us because of my child with DS. We have the usual troubles of maintaining social relationships but that is pretty much the norm it seems for so many!

Ria said...

I worry about this too, but not as much now as I did when my baby was born in 07. So far, my experience has been good. People are generally kind and non-judgemental. We'll see how it goes as my son gets older. Hopefully, the fact that he's half Asian (Filipino) too won't be an additional hurdle for him to make (and keep) friends. I guess one can tell your true friends from these experiences.

Oh, if you find the time, please feel free to visit my blog: Bill and Ria and leave comments where you may. In case you haven't read this poem titled "Creed for Babies with Down Syndrome" quoted in my post "Remember You're Unique, Just Like Everyone Else". That might provide some comfort(?) or strength for your journey.