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Tuesday, October 9, 2012

What to Say to Parents Struggling with a Down Syndrome Diagnosis


I love this blog for a number of reasons. First, it allows me to release some of the tension and trouble I’ve been carrying around with the whirlwind of information, doctor’s appointments, and late-night online research sessions. My emotions bounce back and forth like a yo-yo and writing helps me feel grounded. But it’s not all selfish. I also enjoy sharing this journey with you all. It’s good to know that I don’t have to have these conversations a thousand times, that you’re all getting accurate and updated information directly from me instead of as hearsay from someone else, and that so many of you have read the posts and sent your thoughts and words of support our way. It feels as if we’re not going through it alone. 

As the weeks tick by and we gain some perspective on Quinn’s diagnosis, I realize how difficult it is to be in your shoes. What do you say to someone who has just received life-altering news? How do you react? The answers aren’t simple, and I’ve actually spent a fair amount of time thinking about this myself over the past few weeks. The reality is that there’s no “right” thing to say or do…the emails and phone calls and messages are all unique and offer the support and love that we so desperately need right now. That said, I feel like an instruction manual into this situation would have been helpful, as the one thing we heard more than anything else was, “I don’t know what to say.” I wouldn’t have either. I guess I still don’t. But this won’t be the last time you’re faced with this issue. And who knows, there might be complete strangers out there who stumble across this blog hoping for instructions on how to offer support  to someone who has just learned that their child has Down syndrome. It’s with that in mind that I came up with the following tactics (and if you said/did one of the things on the “DON’T” list, it’s ok. I’m not harboring any hostility or anger because, as I mentioned, I wouldn’t have known how to react either. This list is simply based on my reflection over the past few weeks and what helped us the most. We love you all, no matter what your response to our news may have been).

DON’T...

-say “I’m sorry.” Brian and I actually discussed this one at length the other day. He’s okay with condolences, as it seems a natural response, but I wasn’t a huge fan of the sorries mainly because we’re still having a baby who deserves support and love, not pity. I know that this is everyone’s first reaction, whether they vocalize it or not, but “I’m sorry” is what you say when someone dies or finds out they have cancer.  Down syndrome is not a worse-case scenario, but rather a diagnosis that requires a huge shift in expectations. I think of it like this: for the first year after Atticus was born, Brian and I had crazy dreams for him. He was going to be a musical prodigy, attend an Ivy League school, speak 12 languages, and play starting quarterback for his high school football team. Obviously these are lofty expectations and now that we understand his strengths and weaknesses a little better, we realize that most of them are unrealistic. Of course, this was information we learned gradually over time, not all at once. A Down syndrome diagnosis is like learning all of these things at once and, in our case, before Quinn is even born. It’s tough, sure, but it doesn’t necessarily have to be bad news. Kids with Ds present on a spectrum, much like Autism. Some are affected more severely in one area, but have no problems in others. Modern approaches to early intervention have been found to significantly improve the quality of life for people with Ds and the earlier we start, the better Quinn’s chances of a healthy, fulfilling, and independent life. So “I’m sorry” feels like he’s already being written off based on misinformation and outdated stereotypes, even though I know no one meant it that way. 

-say nothing. This one hurt the most, honestly. I was so touched by the numerous people who reached out to offer support, especially those with whom I’ve had little contact or correspondence over the years. To think that people would take time to write an email to let me know they’re there for me if I need anything was incredibly moving and really made it easier to cope with the news. That said, there were many people who were silent, some of whom were close friends and family. And I noticed. Maybe I should have been thinking of other things, but I honestly recognized the people that never sent an email, never tried to call, never even hit like on a Facebook status that linked one of these many posts. It’s ok to say, “I don’t know what to say,” but it’s not okay to say nothing. 

-expect a response. I know this is shitty and I’m sorry. But our minds have been reeling the past few weeks and despite what I said above, we really did have a lot of love coming our way. So much so, in fact, that we just couldn’t feasibly respond to everyone, deal with the news, raise a two-year-old, go to the millions of doctor’s appointments we’ve had lately, and work full time. It just wasn’t possible. But your words were read and met with overwhelming gratitude and love. I promise. 

-say “what about ________________?” (fill in the blank with a sibling’s name…in this case, Atticus). What about him? He’s still getting a baby brother. He will likely learn more about empathy and the strength of family from his brother than he would have otherwise. He’ll be more protective of him, sure, and there will be times when his wants will have to be placed on the back burner in order to meet Quinn’s needs, but Atticus’ needs will always be met, too. He’ll learn patience, and acceptance, and the true value of good people sooner than most kids. It might be tough for him at times, but in the long run he’ll be a better person for the experience of being Quinn’s big brother.


DO...

-Offer to help. There’s likely nothing you can do to make the parents feel better in this situation. They’ll cope with the diagnosis in their own time. But knowing that so many of you would be there to lend an ear or a shoulder to cry on made us feel like we weren’t alone and I’m sure other parents in our situation would feel the same way.

-express your unconditional love for the baby. Quinn can’t help what he is. He will be born with Down syndrome and will face some challenges as a result of his diagnosis, but he is still a baby. He still deserves love and cute baby clothes and a celebration when he’s born. This helps the parents realize this sooner, as well. So offer to throw a baby shower or help paint the nursery. Make food for the family when the baby arrives. Send flowers, balloons, and teddy bears when he/she is born. Show the parents you’re just as excited about the baby’s arrival as you would be without the diagnosis. They need this.

-check up on them. I know myself well enough to realize that I am bad at asking for help, even when I need it and know it’s there. My pride gets in the way, and this situation will make that no different. In my quest to show the world that kids with Ds are more like typically-developing kids than they are different, I will probably put on a brave face even when I’m crumbling inside. This could happen tomorrow and it could happen five years from now. I will be too proud to admit it unless you ask. And this is true of all parents with a new baby, not just those with special needs. So check in every once in a while to offer a helping hand or words of encouragement; it will not go unnoticed.