"How much do I share about my child's condition with others?" a reader writes. "He's a 10-month-old who was born at 32 weeks with a bilateral brain bleed of the most severe grade. I'm still figuring this all out. This weekend, we are getting together with several couple friends and their babies, who haven't seen our son since he was a few months old and do not yet know about his condition. It's hard to ignore the developmental delays, my son does not have good head control and cannot sit up. But like any mother, I want to protect my child, and there are many unknowns when it comes to his future. I don't want people's expectations, based on their ideas of disability, to put limits on him. I also don't want anyone to feel sorry for us. So, what should I say in situations like this?"
Please share your thoughts and advice with this reader below.
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I find the more I keep things secret, the bigger a deal it becomes. That doesn't mean that I need to share everything or that I need to answer all the questions.
ReplyDeleteFigure out how much you're comfortable sharing and maybe give yourself some ideas on what to say. If it's more comfortable, maybe shoot everyone and email before the weekend giving basics on your son's condition. It might eliminate you have to explain over and over.
"Hey all,
I wanted to give you a head's up on some things you might see with handsome John this weekend! As you know, he was born early at 32 weeks. You may not know that he had a brain bleed. He's under the care of great doctors and working on milestones at his own pace. We can't wait to see you! Love, Susie Q"
I try to model talking about my daughter's delays and medical problems the way I want her to see them. I want things just to be facts. It doesn't have to be a sob story or an inspiration. I want her to know that she doesn't have to tell everybody everything. I don't want her to be embarrassed about having a disability but it is a part of who she is.
I hope you find something that works for you!
~Stacy
This is an excellent answer, Stacy. I've learned to be similarly matter-of-fact over the years. Earlier on in Max's life, though, talking about what happened to him at all was hard for me no matter how succinct I kept it, and I'd get upset. I wish I would have thought of emailing.
DeleteWow, what a great answer from Stacy! And great question. But what happened to Part 2 of Max's school story that you said would be coming this week?
ReplyDeleteYes, a great answer. I ended up having a lot going on this week and couldn't finish that post. Coming next week!
DeleteI like Stacy's answer. I try to keep things simple and direct. I probably wouldn't email ahead but I'd say something simple like what Stacy said when it naturally came up in conversation.
ReplyDeleteTell them what they need to know as far as what to expect and answer further questions as they arise unless you do not feel comfortable answering it.
ReplyDeleteI'm not a parent, but as an adult with disabilities, I would suggest explaining what becomes obvious/whatever you feel comfortable with as well as spending time (just like any mom) bragging about his adorableness and all of the other things that make him him. If people are harping too much on the differences, it's okay to change the topic or brush it off.
ReplyDeleteI feel like I used to hid our daughter's disability when talking to people that I wasn't very comfortable around, but I finally started getting over it a little bit and have just been like, "This is the situation (and then explain it in the simplest terms possible),"... But then go on to tell all the things that she can do, like starting to talk, and that the doctors seem hopeful for XYZ... So I would let them know what is going on if it comes up, but then be sure you talk about all the positive and wonderful things about your child as well. I think that helps to get a more positive and less pitied response from people. Hope that was helpful!
ReplyDeletePaige
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