You meet the family of a newborn baby girl who has just been diagnosed with Down syndrome. You ask the baby’s father about how his daughter is doing and he replies that he doesn’t have any concerns because she’s perfect just how she is. He says he thinks she’ll be just fine. His wife fidgets as if she’s uncomfortable with what her husband said but she appears to follow his lead and does not speak up. What do you say next?
This can be a difficult situation for a service coordinator or provider because of what we know about developmental delays and risks associated with a child having Down syndrome. We can feel like we have a responsibility to “educate” the family about what could be ahead regarding the child’s development, but how do you do this while honoring the father’s acceptance of his daughter? If the father is the decision-maker in the family, how do you respond and still honor the family dynamics?
The truth is, their daughter really is perfect just how she is, so what would you do?
Do you launch into a description of developmental issues associated with the diagnosis?
Do you ask the mother for her thoughts?
Do you ask the parents if they really are interested in early intervention at this time?
Share your ideas and thoughts!
Woo this is a tricky one and the questions posed really gave me pause to consider. I LOVE that the father feels his daughter is perfect. Because there appears to be a possible difference of opinion but the father appears to be the primary decision-maker, I might consider asking if they wanted any resources or to contact another parent and then I’d be on my way, encouraging them to call me if and when I could be of assistance.
Yes, sometimes families just don’t need us (yet or at all) when we think they do. If they aren’t interested or in need of EI right now maybe you could also offer to call and check in with them in a month or two. It would be hard for me to walk away from this visit without out a plan for ME to follow-up! 🙂
It is very hard to walk away from this especially when you can tell one parent does not agree. I agree, I would discuss checking in with the family at a later date. Depending on how dad says she is perfect I may dig deeper into that statement to determine if he really feels that way or if that is a protective mechanism.I may research this by asking questions such as what information has been given to them about Down Syndrome or What are their feelings about what has been told to them about Down Syndrome? Doing this in a way to only find out what the parents are thinking, not to provide information. I love that he thinks that his child is perfect and if he really feels that way I would not want to do anything to dimmer that light for him. A little research can go a long way in figuring out how to asist the family.
A great discussion question!
I agree, Kim, that asking a few questions to get to know the parents and their experiences so far can go a long way for feeling out the situation. Delighting in the child and just spending time talking about her can also help the parents feel more comfortable so that, if they do have questions or concerns to share, they will be able to do so when they are ready.
Of course his daughter is perfect. Way to go Dad! My kids are “perfect” too, but as a parent I do appreciate professionals that take the time to recognize and build on their skills so my kids keep learning and growing. Rephrasing the question and helping the parents learn that you are team members- with them, can help you make progress toward the goal at hand- recognizing the child’s strengths and helping build more as they grow. Also, if this truly is one of the first visits with an EI representative, they may not be aware of the hands-on fun they are about to embark upon as they embrace the EI program and take their newborn into the toddler stages and past. They may also only know the medical prospective of “see child with problem, fix problem, give back to parent.” EI on the other hand guides involved parents, keeping that parent in control, and helps them encourage their child to succeed with every aspect of growth. In this situation, ask the parents to label what is going well with their child rather than what’s wrong and help them think about what is next developmentally. Help them understand that guiding the child and making educated goals for homework will benefit the child, help her grow, give them joy as they see her progress, and keep her perfect! Embrace their attitude rather than feel offended. With the parents onboard to be the child’s biggest advocates, teachers and friends the developmental therapy can go to new heights.
Well said, Danna! You make a great point when you said that the parents could be coming from the medical perspective and not realize what they are getting into with EI. I love how you said to ask them to label what is going well and talk about what is to come. A positive, hopeful, and team-based approach can make a world of difference!