Great Lakes LEND discussion

48 views
What Matters October Topics > How do the conversations (p.44) with Emma (Micha’s Sister) impact your perspective on the role of siblings?

Comments Showing 1-32 of 32 (32 new)    post a comment »
dateDown arrow    newest »

message 1: by Cristy (new)

Cristy James | 26 comments Mod
How do the conversations (p.44) with Emma (Micha’s Sister) impact your perspective on the role of siblings?


message 2: by Abla (new)

Abla | 10 comments I relate to Emma's experience because I too have an older brother with disability. But when your young, you don't really understand why your sibling is different or if he really is different. As you get older and you kind of catch on and notice ok, he's behaving different than me and other siblings in the family. You learn fine that's the way he is and I'm his sister and I have to be a supporter and a protector from outside ridicule and harm. As it can be such an insensitive and cruel world out there, especially in school where kids make fun of each other all the time. I think responsible adults and teachers at school should be more diligent about bullying and harassment and stop it immediate.
I think Micah's Mother handled the situation well by answering Emma's curious questions and not just doge the questions and ignore Emma's comments which would have made matters worse.


message 3: by Ashley (new)

Ashley Renner | 16 comments When reading this, I honestly didn't think of parents having to explain to the siblings why their child is different. This makes me think of family-centered care, and it's not only important to think about the parent interactions with the child, but also sibling interactions. In the narrative, you could hear Micah's mom's fear of explaining Micah's differences poorly. I felt for her as she went through this process hoping that she was doing the right thing.


message 4: by Angelica (new)

Angelica | 7 comments Ashley wrote: "When reading this, I honestly didn't think of parents having to explain to the siblings why their child is different. This makes me think of family-centered care, and it's not only important to thi..."
Hi Ashely,
Thank you for your thoughtful comment. I agree. It is could be a confusing moment for parents to explain their other kids that do not have a disability. I think many, concentrate so much on parents that we tend "disregard" the family unit. Siblings are also involved in this equation, and other family members are involved in this process as well.


message 5: by Maria (new)

Maria Baldino | 2 comments I think this part really highlights the process that siblings go through especially when they are young and becoming aware of the world. I also felt the chapters highlighted the conversations between his sister and mother and emphasized that children have questions and uncertainty about situations just as adults do


message 6: by Felicia (new)

Felicia Foci | 4 comments Maria wrote: "I think this part really highlights the process that siblings go through especially when they are young and becoming aware of the world. I also felt the chapters highlighted the conversations betwe..."

Maria,
I agree ! I also feel like as a healthcare professional I focus a lot on the parent and the child but not always additional members of the family if they are not present during sessions. It was a good reminder to consider the entire family to provide family centered care.


message 7: by Kaitlyn (new)

Kaitlyn Eichinger | 2 comments I really appreciated Emma's view throughout the book. I think it highlights the importance of considering the entire family perspective, not just the parents and the identified child. The whole family dynamic is important. I think programs like SibShops is important to help siblings connect to their sibling with a disability.


message 8: by Jessi (new)

Jessi Eckersberg | 7 comments Kaitlyn wrote: "I really appreciated Emma's view throughout the book. I think it highlights the importance of considering the entire family perspective, not just the parents and the identified child. The whole fam..."
Kaitlyn, I agree with you. I think that, often, the siblings get overlooked, especially in the model of the family. Often you just think about the parents and the child with the disability. I liked this dialogue because it reinforced the importance of including everyone and not leaving any member of the family left out or feeling like there's a secret.


message 9: by Shelly (new)

Shelly Berry | 2 comments I think sibling roles are important to a person with a disability. Mostly because accepting and understanding are the key points to understanding the differences.

Their mother stressed to Emma that it is important that she understands that she may have a different relationship with Micha. This is important because it doesn't make Emma feel excluded and that Micha is favored because of his disability.

In the end it is important to mom that Emma and Micha have a strong relationship.


message 10: by Kaitlin (new)

Kaitlin | 2 comments Cristy wrote: "How do the conversations (p.44) with Emma (Micha’s Sister) impact your perspective on the role of siblings?"

I really love this conversation in the book. When you are young, you have your own ideology of things. When you have known your brother your WHOLE life, he is normal no matter what. That is all you have known. I think as Emma grew up and noticed differences in her brother, she still saw him as the normal brother that she has always known. It really enlightened my heart reading Emma's childhood perspective on her brother. Children are curious - but they are pure.


message 11: by Anna (new)

Anna Merrill | 7 comments It is is important to think about the family dynamic as a whole when working with a child with a disability. This part of the books provides so much insight into the perspective of a sibling who often may go unnoticed while parents, teachers, and clinicians work to meet the needs of a child with special health care needs. It really speaks to the value of openness and communication around siblings' questions and concerns about their brother or sister and how starting that dialogue early in life can help their relationship thrive into adulthood.


message 12: by Stephanie (new)

Stephanie Tellus | 10 comments I think it is very important for siblings to be informed about their sibling's disability, although it is easy to see from this part of the book that that can be a difficult conversation for a parent to have. It was interesting to see the connections Emma was making at such a young age by her questions and I loved the way Janice was open with Emma and explained everything in a simple way that she could understand. I think that it is important to be open and honest with any siblings from a young age in order to establish an open and accepting family dynamic around the subject early on.


message 13: by Deanna (new)

Deanna Proimos | 12 comments I think this part of the book was amazing. It demonstrated what a sibling goes through and the potential questions that siblings will ask. Emma asked questions at an early age, which is probably more common than we realize. Children have a way about being open and curious, and I loved that Janice didn't dismiss this curiosity. Janice's explanation was perfect and age appropriate. Janice mentioned using books to explain the disability, and I thought that was a great piece of advice. A child's disability can be a challenging topic, so I think using a book to begin the discussion would amazing.


message 14: by Jessica (new)

Jessica B | 10 comments Kaitlin wrote: "Cristy wrote: "How do the conversations (p.44) with Emma (Micha’s Sister) impact your perspective on the role of siblings?"

I really love this conversation in the book. When you are young, you hav..."



I have an older brother with disabilities, and when you say "When you have known your brother your WHOLE life, he is normal no matter what. That is all you have known," I really agree with that. My brother was just my brother, and especially as a younger sister I had no expectations for him to be any other way, or "Normal". It makes my perspective different from my parents' because they grew up with neurotypical siblings, and didn't have much exposure to people with developmental disabilities. They also had expectations for my brother to do typical things like grow up, leave home, have a job, get married. I never had expectations for him like that, so while it makes me sad those things won't happen for him, it isn't as devastating as I can only imagine it is for parents.


message 15: by Ellyn (new)

Ellyn | 12 comments Ashley wrote: "When reading this, I honestly didn't think of parents having to explain to the siblings why their child is different. This makes me think of family-centered care, and it's not only important to thi..."

Ashley wrote: "When reading this, I honestly didn't think of parents having to explain to the siblings why their child is different. This makes me think of family-centered care, and it's not only important to thi..."

Ashley wrote: "When reading this, I honestly didn't think of parents having to explain to the siblings why their child is different. This makes me think of family-centered care, and it's not only important to thi..."

I agree! I think these are really tough situations that professionals often don't think about. I recognize the job of a parent of a child with a disability as unique, but I hadn't really realized that parenting the sibling of a child with a disability is also unique!


message 16: by Ellyn (new)

Ellyn | 12 comments Ashley wrote: "When reading this, I honestly didn't think of parents having to explain to the siblings why their child is different. This makes me think of family-centered care, and it's not only important to thi..."

Ashley wrote: "When reading this, I honestly didn't think of parents having to explain to the siblings why their child is different. This makes me think of family-centered care, and it's not only important to thi..."

Ashley wrote: "When reading this, I honestly didn't think of parents having to explain to the siblings why their child is different. This makes me think of family-centered care, and it's not only important to thi..."

I agree! I think these are really tough situations that professionals often don't think about. I recognize the job of a parent of a child with a disability as unique, but I hadn't really realized that parenting the sibling of a child with a disability is also unique!


message 17: by Ellyn (new)

Ellyn | 12 comments Ashley wrote: "When reading this, I honestly didn't think of parents having to explain to the siblings why their child is different. This makes me think of family-centered care, and it's not only important to thi..."

Ashley wrote: "When reading this, I honestly didn't think of parents having to explain to the siblings why their child is different. This makes me think of family-centered care, and it's not only important to thi..."

Ashley wrote: "When reading this, I honestly didn't think of parents having to explain to the siblings why their child is different. This makes me think of family-centered care, and it's not only important to thi..."

I agree! I think these are really tough situations that professionals often don't think about. I recognize the job of a parent of a child with a disability as unique, but I hadn't really realized that parenting the sibling of a child with a disability is also unique!


message 18: by Caroline (new)

Caroline | 10 comments I thought that this conversation was really interesting. I think there's this idea that siblings of individual's with disabilities fall naturally into their role and understanding of disability by watching/interacting with their sibling. I think it showed when Mom was explaining that she'd thought about having this conversation with Emma forever and it was such a burden on her to think about how she was going to explain Micah's differences. I definitely think that a lot of siblings grow into their role, but that it's often neglected how they think/understand/feel about their sibling. I think we can do a lot more to support siblings who support their siblings.


message 19: by Caroline (new)

Caroline | 10 comments Anna wrote: "It is is important to think about the family dynamic as a whole when working with a child with a disability. This part of the books provides so much insight into the perspective of a sibling who of..."

I agree! I thought that the sister was inquisitive about the right things and I think it shows like oh, no one ever really acknowledged his differences before, so she obviously has a lot of fair questions! I think it's healthy for siblings to have a language to talk about disability even at a young age, so that they can identify with certain things. I also think that if Emma had these questions about Micah, then maybe her peers would ask her questions about her brother too, and it would be great if she had a way to answer questions so that other peers could understand and accept Micah too.


message 20: by Hsiu-Wen (new)

Hsiu-Wen | 7 comments Abla wrote: "I relate to Emma's experience because I too have an older brother with disability. But when your young, you don't really understand why your sibling is different or if he really is different. As yo..."

I totally agree with you Abla. These are really good tips that I would provide to those families who need it. Instead of ignoring it, answer it, face it, embrace it would better help siblings to support their siblings with disabilities.


message 21: by Kirsten (new)

Kirsten Harold | 10 comments Maria wrote: "I think this part really highlights the process that siblings go through especially when they are young and becoming aware of the world. I also felt the chapters highlighted the conversations betwe..."

I completely agree with you Maria. I think it could be difficult for siblings as they become aware of things. I think having family centered care is very important to support this process.


message 22: by Charron (new)

Charron Johnson | 7 comments Deanna wrote: "I think this part of the book was amazing. It demonstrated what a sibling goes through and the potential questions that siblings will ask. Emma asked questions at an early age, which is probably mo..."

I agree with the idea of using a book to start and facilitate the conversation about a sibling's disability. This means that healthcare providers need to be sure that we are knowledgeable about legitimate resources that are available.


message 23: by Torie (last edited Oct 31, 2017 02:54PM) (new)

Torie | 7 comments Cristy wrote: "How do the conversations (p.44) with Emma (Micha’s Sister) impact your perspective on the role of siblings?"


I really liked how the mom wasn't pushing her feelings about her brother's disability onto Emma. She didn't have the mindset of Emma needs to know all the details about his condition right now, or only when the mom had planned to discuss it with Emma.I really liked how she while she had ideas about how to talk to her daughter, she met her where she was. She allowed Emma's curiosity to natural grow and in the mean time, display acceptance, understanding, and love for Emma to learn and share with her brother.


message 24: by Brianna (new)

Brianna Lambrecht | 8 comments Stephanie wrote: "I think it is very important for siblings to be informed about their sibling's disability, although it is easy to see from this part of the book that that can be a difficult conversation for a pare..."

Hi Stephanie! I agree, I think that siblings have a super unique perspective and lens through which they view disability. I think that by Janice being open and honest, like you said, was a key part of Emma's ability to engage in conversation around her brother's disability. These conversations are very hard, and parents definitely need to be supported and be offered resources on how to tackle those types of conversations with their kids- sibling education, support, and involvement around this issue can be one of the most impactful ways of keeping a child with a disability engaged in the family dynamic and wider communities.


message 25: by Emma (new)

Emma Lynch | 10 comments As an older sibling of a child with special healthcare needs and medical technology dependence one of the most frustrating aspects of growing up was feeling like I was not included in the conversation and very little was done to inform me about what was happening. I think this particular segment goes to show that children have questions that need to be addressed and even if what is happening at the time may be beyond our capacity it is important to try to be open with the siblings and meet them where they are. Your sibling is your sibling no matter what and as such you want to protect them as well as support them. However, when you aren’t being included in the conversation this is hard to do. I think one way to do this is by being open to their questions and taking time to explain things to them as well as giving them the space to express their thoughts, feelings, and concerns.


message 26: by Hallie (new)

Hallie Johnson | 7 comments When I think about the sibling relationship when there is a sibling with disabilities, I find myself thinking about the clients I work with diagnosed with ASD and their siblings. In these cases, I think family-centered care is very important and ensuring that the sibling is included in that approach. In the therapy I provide, I often like including the sibling in the programs working to enhance their relationship. I also like to interact and engage with the siblings as well to show that they are also important and its not just about their sibling with a disability. Most importantly, I think they need to be as included as possible.


message 27: by Zoë (new)

Zoë Cooper | 4 comments Hallie wrote: "When I think about the sibling relationship when there is a sibling with disabilities, I find myself thinking about the clients I work with diagnosed with ASD and their siblings. In these cases, I ..."

Hi Hallie!
It's very encouraging to hear of familial engagement in practice. Recently in my public health coursework we have been exploring the importance of family-friendly care as it pertains to integrated models of care and culturally humble practice. Public health doesn't have strong clinical components so we often don't see these concepts in practical application. I'm glad you're able to apply these concepts and utilize the closeness/importance of the sibling relationship that is highlighted in the reading!


message 28: by Vivian (new)

Vivian | 7 comments Deanna wrote: "I think this part of the book was amazing. It demonstrated what a sibling goes through and the potential questions that siblings will ask. Emma asked questions at an early age, which is probably mo..."

Deanna, I totally agree with you. One of my favorite parts of the book so far! I really liked your comment about Janice's explanation being age appropriate. Using a book to start the discussion seems like a great idea and I'm curious if anyone here has a particular book that they recommend to parents?


message 29: by Kelly (new)

Kelly Epperson | 3 comments Ashley wrote: "When reading this, I honestly didn't think of parents having to explain to the siblings why their child is different. This makes me think of family-centered care, and it's not only important to thi..."

I agree, I think it is so important for parents to give their children the opportunity to ask questions about their brother or sister and have an open and honestly conversation. Before reading this book, this was not a conversation that I had really thought about. I think its important to foster a good relationship among the siblings, using increased knowledge to promote and encourage understanding.


message 30: by Hanna (new)

Hanna Nebel | 4 comments Stephanie wrote: "I think it is very important for siblings to be informed about their sibling's disability, although it is easy to see from this part of the book that that can be a difficult conversation for a pare..."

Maria wrote: "I think this part really highlights the process that siblings go through especially when they are young and becoming aware of the world. I also felt the chapters highlighted the conversations betwe..."

I agree, as mentioned above throughout other comments, siblings should be informed and given the opportunity to ask questions. It is likely that a sibling may be asked about their brother/sister in terms of what their differences may be. Answering questions and providing information early on is important so siblings feel comfortable responding in these situations. As a professional, it's important to keep in mind the whole family when you're counseling and providing care to an individual.


message 31: by [deleted user] (new)

Jessica wrote: "Kaitlin wrote: "Cristy wrote: "How do the conversations (p.44) with Emma (Micha’s Sister) impact your perspective on the role of siblings?"

I really love this conversation in the book. When you ar..."


In my case, I have a younger sister with a developmental disability and I always saw her as normal as well. It wasn't until she was diagnosed and was provided with services that I could put things for her childhood in perspective. I think it is extremely important to keep siblings in these conversations especially if they live together. This way siblings can help each other out and also have a better understanding the situation.


message 32: by Daphna (new)

Daphna | 9 comments Cristy wrote: "How do the conversations (p.44) with Emma (Micha’s Sister) impact your perspective on the role of siblings?"

Overall, I really appreciate Janice's frankness and raw inner dialogue that she presents when discussing her feelings and interactions with her children. When she shared the initial conversation with Emma, her words allowed me to truly put myself in her perspective, and I felt for her when she unsure how to respond. The conversation reminds me of the importance of acknowledging and respecting the role of siblings in the family with a child with developmental disabilities.


back to top