"In a way, she makes it easier for me. Because she-and-I-together, well, I know how that goes. It's-easy/it's-lonely/it's-playful/it-sometimes-stings, but it's a familiar sting. The pain of sitting with a group of typical moms and typical kids, listening to conversations ebb and flow... that pain is different, surprising, and I never know where the unintentional jabs will come from: a lament over a child's refusal to stop climbing on the furniture, a comparison of new favorite toddler snacks, or the sharing of the silly things that little kids say. There's nothing for me to contribute to those conversations, as I long for climbing and typical foods and toddler conversation. It's easier for me to keep my distance."
Read the full essay here, on What to Expect's "Word of Mom" blog.
Thank you....felt like I wrote this as just Saturday I had a glimpse of my daughter being "left out" of a gathering with kids from her music class. We arrived home from China with our daughter on August 15th....6 months to the day, after much pushing from mom :) that something was not "quite" right, she was diagnosed with mild cp. She does not walk yet (just turned 2 on Sunday) and only says about 10 words but has made amazing progress. I have a feeling I will be visiting you often.....
ReplyDeleteAs the mom of a "typical kid" - or 3 of them - how can I be more aware of how my actions and words might make you and your kids feel more included in conversation/gatherings/etc? I think on the typical kids' mom side, I don't know if I am offending you and I'm also not sure how to draw you into the conversation without causing discomfort. Any insight would be great!
ReplyDeleteI also wanted to share that I saw a kid at the park the other day, a 2 yr old little girl and she had a prosthetic arm. Aspen walked up to her and was trying to play with her so I asked her a few questions about the little girl (but nothing about the arm.) Going through my own struggles with Hunter's health it occurred to me that we are all handicap in some way. I can't hear out of my left ear, Hunter has weekly blood infusions, etc. It made me think that we all need to be more patient and kind to others because we really have absolutely no idea what is going on in their lives. Looking at me and my kids you would think I had perfectly healthy happy kids. I don't. No one does. It's something we could all focus on a little bit more.
Love this article. I feel this way at a lot of events. No matter if it is the playground or a BBQ it still the same stares, the same awkward questions and the same hope that this will get easier.
ReplyDeleteIt's an excellent question, Trish, and one that I have intentionally not (yet) written about, as I don't think I can come up with an answer that would have mass appeal :)
ReplyDeleteA few thoughts:
1. Regarding your initial question, as to how to be most inclusive, I don't think there's a universal "right" answer for those who are in a place of a more raw, open wound type of reality (close to diagnosis, going through a rough time, etc). Some of them could prefer to just be treated the same as "typical" families ("Can you believe that stranger asked about my kid's diagnosis?!") whereas others could prefer acknowledgement ("It was so awkward, that stranger didn't say anything about the differences between our kids but I wonder if she was thinking it the whole time").
I think as the diagnosis fades and this untypical life becomes the norm to those on the inside, I think the answer is always to treat the families as you would treat any other families. Especially regarding the child---if in doubt of their skills, assume competency (ex: Don't worry if you say "Do you want to come draw with us with the sidewalk chalk?" and then learn that the child can't hold chalk.) Assuming competency is awesome, and parents know how to modify things to include their kid.
Bottom line, though, I wrote this very deliberately to show that the "fault" (for lack of a better word) doesn't really lie with the other parents. I very much appreciated when other parents tried to be inclusive, even though it was sometimes uncomfortable (or painful) for me. I had to work a lot of things out on my own (and sometimes still do).
Without a doubt, the BEST ADVICE I could give for a playground scenario would be to include the child who has special needs in play with your child. Don't worry if your child says something awkward ("why can't she talk like me?")--your modeling that there's nothing strange or scary about kids who might initially seem "different" can help teach her about inclusion and that differences are normal (and that they probably have things in common, too!) and that will make the playground feel like a very welcoming place :)
2."Looking at me and my kids you would think I had perfectly healthy happy kids. I don't. No one does. It's something we could all focus on a little bit more." I think about this frequently, and I'm glad that you made this point.
(3. On a personal note, I remember you :) Congrats on all 3 of your kids, and I'm glad to see you're doing well!)
This hits close to home for me right now. We are at that stage, almost 2, no diagnosis, no talking, no walking, not eating solids. I am nervous about venturing out into the real world as my daughter is getting older, but I know that it is best for her and I to let her experience as much as possible. I have a great group of "mommy" friends that know our history, but even with them I get the pangs of personal pain.
ReplyDeleteI know there will be tough days ahead, but I try my best to stay positive. I am happy to read blogs like yours that give me hope and let me feel a little less alone on this journey of "special needs" parenting.
My daughter has a chromosome 6 deletion, and has made great progress in everything but speech. She is VERBAL per se, but no actual words. Sometimes you listen to her, and you know she wants to say something. I think I tend to be one of the mothers that like to have her differences acknowledged. I don't mind answering questions, and it gives me an opportunity to vent- even if the parent may not fully understand. One phrase I hear alot tho, that I hate is "oh she'll get there, she's just taking her time". I know I've seen a blog post on here about it, and I agree that it makes me think "well, what if she doesn't" because right now we dk. It also makes me feel like they're saying it's not a big deal. My daughter is a healthy little girl and I'm grateful, but it is a big deal to me that she isn't talking yet. (Sorry this is so long)
ReplyDelete