Positive support from friends, family, and health care professionals

August 26, 2013 in Comments, Friends and Family, Medical Provider, Support

Katie Ryder with her grandmother Lona Kewley

We would like to hear from both experienced and expecting parents about the wonderful support they have received from friends, family, and health care professionals. We spend a great deal of time helping parents cope with negative or stinging comments, mainly because we do not have built-in coping mechanisms for those unexpected events. Sometimes when in the stress of pregnancy post-diagnosis, a negative comment can send us reeling, and may actually drown out the many positive comments we hear.

However, there are extraordinary people out there. People who rise to the occasion and give a piece of themselves to give genuine, loving support. Focusing on their words and their actions, their support can help build our confidence and reinforce the knowledge that the world is a welcoming place for our children.

Sometimes that support comes from friends and loved ones who dive in to learn more about Down syndrome and the available resources so that they understand our children a little better and how to help them achieve their potential. Other times that support comes in the form of friends visiting the hospital and bringing blankets, stuffed animals, and candy to the Newborn Intensive Care Unit. That support can also include comments that welcome our children into the world, like the nurse who says “Congratulations! You’re baby is precious,” or comments that shape our understanding about disability, like a friend who shares, “My cousin has Down syndrome, and she’s an important part of our family. We love her.”

Please share in our comments the words, actions, or attitudes of those around you who gave the best of themselves and in turn helped you cope or look forward to a bright future. If you are on Facebook, you might also want to post your comment to your Facebook status and link to this blog post. Or post a thank you (sample linked below) in your Facebook status.

Booklet for Friends and Relatives: HERE
Sample thank you letter to the person you appreciate: HERE

(Note: We recognize that some things that bring comfort to some people may not help others because of the diversity of the personalities and beliefs of our expectant parents. For general guidelines, see our Relatives booklet linked above. Supporters should tailor their comments and support to match what they know about the personalities of the expectant parents.)

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11 Responses

  1. Adrienne says:

    I will include this site on my blogroll :) This truly helped me when I was first given the diagnosis.

  2. Megan says:

    We had great support. From our genetic counselor who told us to cling to each other, then called back the next day with all the “to do” information, to friends who just told us that they love us and that they love our daughter, I think we really lucked out. Our doctors were wonderful.

  3. LIsa says:

    We had so many great friends and medical professionals in our lives — and some not so great ones, too — but my favorite was when I called a friend far away to say, “I’m pregnant …. and my baby has Down syndrome” and she was relaying my words to her husband in the background as I spoke them. Before she could even say anything he said, loudly, for me to hear: “A baby is coming. That is a beautiful thing. Congratulations!”

  4. Amy says:

    Prenatally, the Down Syndrome Clinic at Children’s Boston was a real lifeline – they provided my first opportunity to talk to another parent and gave us some great resources.

    We have received stellar care since Abigail’s birth – 8 years of caring pediatricians and specialists all with one goal in mind: keeping her healthy and happy. With new providers, I make sure to introduce our preference for people-first language, and this has really enabled me to feel that my child is understood as a person when they use her name or “other kids with DS” instead of “my Down’s patients.” I feel like younger docs she sees are less resistant to changing their language, and that definitely enters into who we select for her care.

    Another key source of support has been Abigail’s teachers and peers at school. This year especially, we have a true partnership – the teacher and aide write daily to us about what is going on in the classroom and ask us questions about modifications for assignments coming up. Her reading teacher sends home next week’s spelling list on Friday so we have the weekend to begin to get familiar with the words before instruction starts on patterns etc… Abigail has good friends to play with on the playground or during other social or group reading times. The end result is a huge improvement in reading and math this year and true engagement for both Abigail and us in her school community.

  5. Sarah says:

    One of the most supporting things was when my mother asked to borrow some of the materials we had received about Down syndrome then brought them back a week or so later with notes. She had gone over the various resource lists, made calls and let me know that when we were ready we should call XXX to start early intervention, where the nearest Down syndrome clinic was, and more. She did the early legwork for me that I wasn’t ready to take on.

  6. Heather says:

    My dad said that he felt bad for me but that he knew I would be a great parent. Coming from a guy who usually says things like “Pull yourself up by your bootstraps, honey” and “Oh, it’s not so bad”, I really appreciated that, just for a minute, he just got in there and felt my pain with me. He then asked me what I needed, what he needed to do, where he needed to be, what he needed to know. Another break with his usual MO…he didn’t tell me what he was going to do but he let me take the lead. He didn’t know it at the time but he was communicating to me a key thing I really needed: “You got this, honey! I believe in you” His support made me really believe in myself and how important is was that believed in myself.

  7. Stephanie says:

    One of the best things anyone said to me was our bishop. I remember being distraught and not knowing what it would mean to have a son with Down syndrome. Our bishop wisely said, “Your son is responsible for all he can learn, and you are responsible for teaching him.” I really loved this more and more as the years went on because he really acknowledged Andy’s individuality, humanity, and ability to learn and grow.

  8. Missy says:

    A customer of ours sent me a congratulations card with the words “Gifts come in many packages! Congratulations on your new addition.”

    That meant so much to me, for some reason – I will never forget his kindness and perspective.

  9. Nancy says:

    My OB has a busy practice, and pregnant women see all of the doctors as a rule. But post-diagnosis, she kept me to herself, and said she’d deliver the baby whether she was on duty or not. The cardiologist was kind and gentle, and set up a meeting with cardiac lactation consultants. They and my perinatologist were so supportive, as were their support staffs.

    At Gabby’s birth, the extra medical people were excited and it was a party atmosphere. Hugs and congratulations flowed freely. The next day, when all was quiet, I went to the nursery, looking for a nurse to give me my baby. Instead I saw her getting an echocardiogram. The cardiologist looked up with a grin, waived me in, and said congratulations, that Gabby was beautiful.

    So many other people were wonderful – our parents, our siblings, our neighbors, our friends. It’s so easy to replay in my head the negative comments over and over, but they were outnumbered by the positive comments and support.

  10. Our pediatrician came into our hospital room after examining our daughter in the nursery. He began by saying, “Well, let me first say, you have a healthy baby girl.” That very first sentence framed how she should be viewed and referred to for me.

    My eldest brother, who is normally a very stern person, perhaps because he is a surgeon, was entirely caring and supportive, sharing how he had treated individuals with Down syndrome, had seen them with their families, and told us we were going to be fine because we were loving parents.

  11. Ellen says:

    After we had my son’s diagnosis confirmed when I was 16 weeks pregnant, my husband and I went home and sat down and talked things out (and I cried a bucket load!). The first thing my husband said was “i think this will make us better people, and i hope it will make us better parents”. The thing that hurt me the most was the idea of the social isolation he might experience – I just didn’t want him to have a lonely life. The second thing my husband said that night was “this is just a baby that needs extra love- and we can do that”. It meant so much to me to know that my partner not only had full faith in our ability to parent our son, but it also didn’t change his desire to parent our baby. We had some bad experiences with healthcare providers and also some really great ones. The best were the ones who took their cues from us – we were just looking forward to being parents and they embraced that and didn’t treat us differently – the worst felt they should warn us about every negative aspect of DS, and asked intrusive questions and made all sorts of assumptions about our decision not to terminate. What really helped too was our wonderful friends, who didn’t pity is at all, but celebrated with us, and visited us and told us we would be great parents.

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