So, a little while ago I ran across another blogger who wrote two different posts about what to and what not to say to someone who has recently had a child with Down Syndrome. I decided not to look at her two lists and compile my own and see how they compare. I actually have been thinking about this for quite some time. I thought a lot about things that were said to me. Some things bothered me then, which if said now, would not. I actually couldn't think of 10 things for either category. I came up with 9 things for what not to say and 6 things for what to say. They are in no particular order.
Things NOT TO SAY when a baby is born with Down Syndrome
1 - I'm so sorry.
- Don't ever say any comments that are mournful or pitying in manner. There is a new baby to celebrate!
- Yes you can. It's in fact the only thing the new parent can see for several days. Even if you are having a hard time seeing the physical characteristic's of Down Syndrome, keep it to yourself.
- They just had a baby for goodness sakes! This isn't a prison sentence. Believe it or not, we continue to live normal lives too.
- Yeah. Someone actually said this to me. Seriously. It was meant to be encouraging but the point of this bullet is to remind you to think about what you are about to say. Comments like this are just going to remind new parents that their sweet, new little baby is different and there will be many challenges ahead. Let them enjoy these moments with their newborn, not their newborn labeled with Down Syndrome.
- At that point, neither do we. It can be an overwhelming thought that early on.
- This is actually a question, that depending on my mood, still annoys me. No baby, with Down Syndrome or not, comes with a manual telling parents when they will hit certain milestones. Yes, babies with DS take a little longer to learn how to do certain things. New parents, especially, aren't going to be familiar with the DS growth and developmental charts. If you are that interested in knowing the answer, look it up online yourself. As the child gets older and a parent is asked this question, it can actually be very hurtful - unintentionally of coarse. For example, the child has been working for 6 months with a physical therapist on walking. There has been virtually no progress and very little strides in the right direction. The parent is feeling discouraged, helpless and, well, quite frankly, sad. Then, you come along, and ask the question, "When will Johnny be able to walk?" It can be very hard to choke back emotion at those times.
- This is something no one can know for many years. There are also so many opportunities for children with DS to get great therapy, that the possibilities are endless.
- At that moment, NO it couldn't. This news has just crushed these parents. Even if the family knew before the birth, it's now very real. Don't trivialize their emotions. You DO NOT know what they are going through...and if you do, you would never say that.
- Yes, another thing that was said to me...by a NICU nurse. I'm not sure what she was hoping to sooth by using this comment but whatever it was, it didn't work. I remember thinking, at the very moment she said it, "If I don't have high expectations for him, then who will?" Again, this goes back to think about what you are about to say and how will an emotional/hormonal new mother take it. You can't take it back once it's been said.
Just a side note in this category. After I had Raymond, I was bombarded with flowers. Almost as if someone had died. I don't remember getting any flowers after I had Isabella (our first) and my mother-in-law sent me a basket of flower's with a big lily in the center after Lily was born (our third). The basket of flowers with the lily seemed so appropriate. While receiving arrangement after arrangement of flowers in the days following Raymond's birth, I remember thinking all these people were so sad for us and felt such pity. I guess what I'm getting at is a simple gesture can even be misinterpreted. I'm sure some people were sad for us but then other's were just trying to help us celebrate the birth of our son. My suggestions would be, instead of flowers, send a fruit basket, cookie basket or a basket with some type of goodies for mommy and daddy in it. Send something for the baby or a gift card. Flowers can be interpreted as mournful, and that's exactly how I interpreted 99% of the flowers I received. (Truly, I got a lot of flowers!)
Things TO SAY when a baby is born with Down Syndrome
1 - Congratulations (what a blessing)
- There is a sweet new baby to love!
- I think a lot of parents are worried that their child with DS will not look like them. This isn't true, even though there are some typical shared characteristics of people with DS.
- Something you should ask any new parent.
- Many new parents are worried that people won't except their new addition. This small request can mean a lot!
- Remember that parents are often very overwhelmed after having a new baby - especially when they've been thrown something they don't expect like a DS diagnosis. One less thing to worry about is exactly what they need.
- There are often extra doctor visits after a child is born with special needs. Not having to take along other children allows parents to focus on what doctors and other medical professionals are trying to tell/teach them. Even just watching the other children for a few hours in the afternoon can help a parent get their thoughts together. It can take awhile for parents to adjust to this new diagnosis.
A lot of the things on these lists, in my opinion, can be applied to children with other disabilities as well. I truly hope this helps someone who is reading. Whether they use it for themselves or pass it onto someone who they think might benefit from the information.
Until Next Time!
Lots of Love,
3 comments:
I remember NOT being upset at Raymond's Down Syndrome but I do remember how awful all the medical problems he had and how very little he was. But he had the strength to overcome and look how he thrived after 4 years! He is such a sweetie and has come so far already.
This is a brilliant list. I remember when I had my son a well meaning midwife said we hadn't done anything wrong it was just bad luck! Nobody wants their child described like this.
Anyone who offered to hold the baby made me feel better as you do worry how your new addition will be received
The one I would like to add to the list. She is so happy ds are blessed with this personality. Could it be that she has a great family and that she is happy because were playing with her. Love the can I hold the baby, you won't break them. Thanks for the list.
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