Tuesday, January 19, 2010

I told Devin that Logan has Down syndrome

Tonight, I told Devin that Logan has Down syndrome. It was kind of a spur of the moment thing. I had came across a children's book that I thought would be helpful for Logan's classmates some day when they had questions about Logan. The book came in the mail today and when I opened it I decided I would read it to Devin before I put him to bed for the night. I knew if I thought about it too much I would talk myself out of it and put it off for a while.

So, I told Devin I would read him the new book and we walked to his room and sat down. As soon as I showed Devin the cover and read the title, he immediately pointed to the cover and said, "that looks like Logan!". At that moment I suddenly had a sinking feeling and felt a little nervous. I was thinking, "should I do this now, tonight"? "Is it too soon to bring it up?" "Is Devin too young to understand."

I read the title of the book and Devin got excited about figuring out the secret. As I read, he looked at the pictures and responded to the questions like "I like school, how about you?"

When I was done, I just said, "Logan has Down syndrome just like Ben." Devin immediately said, "do I have Down syndrome too?". He asked in an excited voice, like he wanted me to say "yes you do."

Then Devin asked "why?" and then I panicked a little. I said that some children are born with it and some are not. I mentioned the names of some of Logan's friends who have DS and I told him that each of them has it, but their brother's and sister's do not. Then, Devin asked, "do girls have it too?" He assumed that just boys have it because the story was about a boy and many of Logan's friends are boys. But, I reminded him of the girls we know who have DS.

Then that was it...he seemed satisfied with it and asked me if I would read him another book. I kind of wanted to continue our conversation, but I knew he wouldn't understand much more than that. The book did a great job of describing how Ben is different, but also how he is more like other children. It described how Ben needs extra help with his speech and I was able to tell Devin that that is why Logan has therapy. I knew that Devin wondered why he didn't have therapy too like Logan, and now he knows.

I do think that I will read Devin the book a few more times to see if there is anything else he would like to know. I also plan to donate at least one copy to our school library and Logan's future classrooms.
I would love to hear how others told their children about their sibling with DS. How did you do it? How did it go? Did I do the right thing? Is there anything I should watch out for now with Devin?


Maureen said...

Hi Melanie, My son was almost 5 when we had Penny and now he is 7 1/2. When she was first born, it was more about the heart defect and we focused a lot on that. She had 2 open heart surgeries before she was 6 months old. Explaining the Down syndrom to Nathaniel turned into an ongoing open discussion. It helps that there is a larger age difference. The latest concerns he has are that people will make fun of her when she goes to school. I said that may happen and I also said, "You will have to decide if you want to be the kind of brother that is going to pretend you don't know her, or if you will be the kind of brother that will stick up for her and tell the other people not to make fun of her. Only you can decide. I can't tell you what kind of brother you want to be." His response made me so proud as of course he wants to be the kind of brother that will protect her. But some days he tells me he wishes she didn't have Down syndrome, and although that breaks my heart, I can't say I blame him! :) I appreciate his honesty. We didn't get into the chromosones, but I told him to expect that she might be a little slow at learning some things, and her speech will take a lot of work. But that she is still a person and derserves everyone's respect because she still has feelings. Sorry this was so long, I worry about this all the time too. Sounds like you are doing a great job by letting Devin lead the discussion.

Jennie said...

Thanks so much for sharing, Melanie. I've been wondering about having this conversation with Nathan. I was planning to wait until summer. I keep hoping he'll ask some sort of question about Matthew walking before Micah, but he hasn't yet.