Friday, September 5, 2008

Don't know what to say

I wonder more and more lately what to tell my other kids about Finn. Kevin knows that Finn had Down syndrome. Being that he's going on 12 years old, he's definitely more aware of things, and had a lot more questions than the other kids did when Finn was in the hospital. I think that's when we told him, back then. He was somewhat familiar with the term "Down syndrome," as he had just recently read a story which featured a boy with DS who couldn't swim and was saved from drowing by a pig (apparently a true story, by the way). But de didn't know exactly what Down syndrome meant, so I explained to him in very basic terms that it's a condition that some people are born with and that it usually makes them look a little different than most people, and that it often made these people learn how to do things a little more slowly than most people.

Kevin has worried over Finn a lot. I think the whole hospital ordeal was as traumatizing to him as it was to us. When Finn finally came home from the hospital, for a while Kevin was worried when he went to bed each night that Finn wouldn't be here with us in the morning, that he would be back in the hospital. And at one point, a few weeks ago, he asked me "Is there anything else wrong with Finn besides the Down syndrome?" So I told him about the hole in Finn's heart, and the fact that both of his testes are undescended (Michael didn't think it was necessary to tell him about that, but I feel better having it out in the open since it's something that's going to require further medical management which will likely precipitate more questions from Kevin, so why not just get it out there now since he's asking?). And I told him that we're hoping that neither of these things is serious but that we have to have special doctors look at Finn because of these conditions and that he may or may not have to have more surgery, we just don't know.

So Kevin is aware of these things. The other kids are not. They don't even know that Finn has DS, although we are very open about it and the term is an often-heard one in our house (I'm a little surprised that Joey hasn't asked what Down syndrome is).

I'm finding that, with respect to the kids, talking to them about Down syndrome feels a lot like talking to them about sex. Where do you start? And when? How much or how little do you tell them? And, boy, it sure feels uncomfortable.

I've always been a firm believer that it's best to answer kids' questions as they ask them, honestly, but briefly, without giving more information than they can deal with. I've had that philosophy about sex, religion, death - all the sensitive topics. But for some reason I'm feeling unsure of how to handle the Down syndrome talk.

The thing is, they're not asking. Joey, surprisingly, hasn't asked what Down syndrome is. He knows that Finn was in the hospital after he was born because he had to have an operation on his tummy. Daisy and Annabelle, who are almost 4, know that as well.

Now we have people coming to the house - physical therapists, Finn's service coordinator, and there will be more as time goes on - and the girls seem to think that everyone who comes to "look at Finn" must be a midwife (gotta love that mentality!). I'm not sure how to explain to a couple of 4-year-olds what exactly these people are and why they're here.

I'm torn about what to tell the younger kids. Do I wait until they ask specific questions? Won't they notice if/when Finn starts showing developmental delays? It's funny, because they all have already labeled him "smart" because he can roll over. "He's a smart baby," they all say. And when they say this, a little piece of my heart breaks. I, too, want to believe that he's smart. But the books tell me that he's mentally retarded. How can that be? And how do I tell his brothers and sisters that? Or do I not tell them and let it take care of itself in time? And if I do that, will they feel like we kept something huge from them?


Cheri said...

Hi Lisa, I found your blog on the Gifts website and read your post about not knowing what to say...I went through the same thing when our son was born with Down syndrome. His big brother was 5 1/2 and I was not ready to tell him much at first other than his brother had a problem with his heart...I didn't want anything to hinder him fully embracing his brother. Looking back I could have told him earlier and he would of handled it amazingly... but we were all processing and I guess I was the one not ready. When the day did come to share more about what Down syndrome was (Reid was 8 months by this time)...we simply told our older son that his brother was going to be able to do everything he does, but that it is just going to take him longer. We told him that God gave us him first because he knew Reid was going to need an amazing big brother to help him learn how to read and ride a bike. We asked him if he had any questions and he said, "no, but hang on a second..." and he proceeded to pick up a book and took it right over to his baby brother and told him what the words inside said. I think you need to trust your gut...put aside when others think you should reveal it all...I had people tell me I was wrong for not giving our son all the information right away...but it didn't feel right. You'll know when and how much. We live in So CA too. :)

Carla said...

Oh man, Lisa, this is hard, but the fact that you are even thinking about it is huge. I haven't BTDT so I don't have any words from experience. I am certain, however, that whatever you have learned from being with your other children will guide you wisely with Finn. Although you are struggling, I believe that you will find a way to talk about what is important, when it is important, and in a way that each of your children will be able to grasp.

Cleo said...

Hi Lisa, Finn by being who he is, a wise baby, will guide you and your family in this journey, listen to him with all your heart, trust him, he will continue to show you how amazing he is. I think that your philosophy about dealing with life’s different topics is the way to go, trust your on wisdom, you will know what to tell them and when. Sometimes is also good to tell the kids up front about certain things in the simplest way so they don’t worry or get scared by misunderstanding what is going on, always reassuring them that everything is OK and embracing all in a natural way. My niece is beautiful and perfect, she was born 5 months ago surprising us all with one extra chromosome also knows as Trisomy 21, she had open heart surgery a month ago and she is doing GREAT!!!. When our Michelle was born life as we knew it changed for the better, the things that were important before her birth are no longer important, she has been teaching us what is REALLY IMPORTANT in life, she is our INSPIRATION. Our Michelle is VERY SMART, we are so grateful for all we are learning from her. We believe in Michelle, she shows us every day all the things she is capable of doing and we accept and respect her own pace, always helping her and being proud of every step. Anything that a book, doctor or any person can say about Michelle that is not encouraging and does not validate her unlimited potential it is simply not important to us. Best =)

Lisa B said...

Lisa, I think your approach of telling your other kids about what they ask about when they ask in brief terms is a great approach - you know them best and know what they need to hear and when. As for all the people coming in the house for therapy, you could try what I did - since I did not want Matt to be stigmatized with his speech therapy I have always referred to the therapists as "talking teachers" instead, and both kids just accept that label and since "teacher" is never used in a derogatory manner in our society, they don't think of the therapy as anything other than education - which is what it is after all! Good luck! Lisa

heather said...

I remember going through this same thing when Morgan was born. My other children were 5, 4 and 18 mos. I chose to not say anything. I wanted them to learn about Morgan on their own and love her for who she is and not be fearful of her due to a diagnosis. They didn't ask questions but what I found interesting was that they LOVED the qualities that were part of the Ds. Like, one brother always commented on how she had the prettiest eyes in our family and the cutest little ears, etc. Morgan was their little sister and they loved her and accepted her for what she accomplished and never thought anything was different from any of our other children. I would do it the exact same way again if I had a choice.

Anonymous said...

All I can offer is this:

Take it as it comes...

I'm certain you'll know when the right moment is.

For all you know, Joey and the twins might say something before you, which is perfectly good!