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What Matters October Topics > Do any of the ten "ways you can make a difference" (p.32) resonate with you? Why? How?

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message 1: by Cristy (new)

Cristy James | 26 comments Mod
Do any of the ten "ways you can make a difference" (p.32-36) resonate with you? Why? How?


message 2: by Jamie (new)

Jamie McGrath | 2 comments The one that resonates with me in number 2. This difference talks about the loneliness parents can feel during this journey. This is something I am very passionate about because I do not think we give the parents enough time. I think giving parents more time to talk about how they are doing and how they feel is something most clinics could benefit from. I understand that our main goal is to help the child, but if we do not help these parents the kids will not have the support they need. If we want the outcomes of our children to get better, I believe we need to start focusing on parents mental health.


message 3: by Kelly (new)

Kelly Epperson | 3 comments Jamie wrote: "The one that resonates with me in number 2. This difference talks about the loneliness parents can feel during this journey. This is something I am very passionate about because I do not think we g..."

I agree with you, Jamie. Number 2 really resonated with me too. I think this can be a topic that clinicians find intimidated or uncomfortable. These conversations with parents need to continue to happen throughout the journey so we can provide effective treatment and address the needs of the child. Last week I saw a patient who had been diagnosed with a hearing loss three years ago. It was very obvious that her parents were still "grieving" and had not accepted her diagnosis. I spoke with them about their feelings, and quickly realized that I was the first medical professional to ask since her initial diagnosis. Giving families space to breath and talk about their concerns and fears is so important and often overlooked.


message 4: by Abla (new)

Abla | 10 comments Kelly wrote: "Jamie wrote: "The one that resonates with me in number 2. This difference talks about the loneliness parents can feel during this journey. This is something I am very passionate about because I do ..."
I agree, as I was reading about the importance of family outcome in additional to child outcome, the family outcome is just as necessary and important for the improvement of the child's healthcare. The parents are the one's who will be taking care of the child and who are spending most of the time with them and know their child the best. Therefore, it's imperative to offer them as much support as possible. To give them resources and information where to get assistance and how best to cope with the situation. And offer them guidance and emotional support.


message 5: by Leah (new)

Leah | 3 comments Cristy wrote: "Do any of the ten "ways you can make a difference" (p.32-36) resonate with you? Why? How?"


Number 2 was the one that really hit home for me as well. I agree that we need to focus more on parents and ensuring we're doing our part to make them feel comfortable and supported, because most of the time our clients/students spend is with their parents. If we want more success, we need parents to be on board too, and I think this is often overlooked. I have a first cousin diagnosed with ASD, and my parents have told me stories about my aunt and uncle quitting various therapies due to isolation and not receiving necessary support or given adequate time.


message 6: by Michael (new)

Michael | 3 comments I also liked two but three and ten resonated the most with me. Being able to anticipate and normalize feelings people have with regard to accepting that the preconceived plans they have for their children may not happen exactly how they anticipated is very hard. The emotions that come with that realization are raw and health care providers many times just remind them of that lost plan and try to sell them on what to do next hoping to not have to address the elephant in the room. Providers can do so much more if they are "alert...to feelings and respond empathetically." Janice's words in her poems and thoughts she had while experiencing the disconnect of feelings between herself and providers really struck me.
Acknowledging feelings, talking about the tears, sharing the burden so hope can be rebuilt is the lesson I kept hearing being taught to me.

Something I underlined and refer back to many times is on pg 16 where Janice talks about "redfining disability, not as a deficiency but as a difference, a natural part of the human condition, an imaginative way to live." I think helping parents through those normal feelings at the beginning and reinforcing that ID is a difference that opens up new hopes and plans will be what I draw on in future practice.


message 7: by Rebecca (new)

Rebecca Weisshaar | 2 comments #5: You have the opportunity to help us know our child. This stood out to me. As professionals that regularly work with children and adults with disabilities, I think we forget how uncommon our knowledge is of specific diagnoses and the disability community. We have great opportunity to educate and empower families, help them understand the nature of their child's condition, and connect them to resources that will give them success.

All of the items on this list were great reminders of the practitioners we should be. I think they will all frame the way I approach families in the future, to be a more compassionate and patient ally to parents of children with significant disabilities.


message 8: by Angelica (new)

Angelica | 7 comments The book was a fresh perspective on a parent’s perspective. One of the points the mother mentioned that resonated with me was that “you have the opportunity to decrease our profound sense of loneliness.” (Point 2)
People do not choose cancer or diabetes; therefore, when families are confronted with situations like this, it is not considered to be their fault. Support groups are more sensitive towards this matter and try their best to help decrease their profound sense of loneliness. On the other hand, since birth, society is disciplined to believe that disability is bad and sad, and since many choose to have a child with a disability, this is their own fault and responsibility. Unfortunately, our system creates the boundaries that marginalize PWD and their families, pushing them away because their lives do not follow the norm. This makes it harder for people to accept disability and support families of people with disabilities, leaving these families alone.


message 9: by Ashley (new)

Ashley Renner | 16 comments #5 You have the opportunity to help us know our child. I can't imagine the feeling parents have when they receive a diagnosis that they, and many others, do not understand. I have heard many parents say that understanding their child and their challenges is helpful in the process of figuring out how to best help their child. As professionals, we can offer as much knowledge and information as possible in order to help the parent understand the diagnosis and their child.


message 10: by Cyndi (last edited Oct 16, 2017 09:22AM) (new)

Cyndi Johnson | 15 comments As a friend and fellow mama, I once sat in with a friend--at her request--on an IEP meeting. The audiologist swept into the room late, explained that she was between commitments and needed to make her comments and leave, and then proceeded to drop a bomb shell on the mother by saying that the hearing evaluation showed that her child had severe hearing loss (news to the parent) and that he needed supports in that area. One look at mom, and I knew she had shut down. There was no other information she would be able to receive in that meeting, and yet the others tried to continue on. I politely interjected and suggested we end the meeting and re-schedule after mom had a chance to read the audiology report and get her mind (and heart) around this new information. The team agreed, but that they would have carried on with mom having checked out is disappointing and insensitive. I think this really speaks to the "f" word (feelings) being effectively ignored and removed from the situation. But the reality is that this is emotionally messy stuff that cannot be ignored if we want parents to be genuinely engaged.


message 11: by Felicia (new)

Felicia Foci | 4 comments Jamie wrote: "The one that resonates with me in number 2. This difference talks about the loneliness parents can feel during this journey. This is something I am very passionate about because I do not think we g..."

Jamie,
Number 2 also resonated with me. I feel like we focus on this more for parents who are coping with a new diagnosis but do not always address this for parents who have older children.


message 12: by Courtney (new)

Courtney | 1 comments When I read this book, I bookmarked the 10 ways to make a difference. I think many of these are about the important part of being a professional in our fields in accepting and allowing the families we work with to express and experience their feelings. While many in the list address this idea, I think #3 does it best. In my field, we might be with a family every week for months straight throughout childhood, so we will be with a family through many highs and lows. It was important to hear from Janice as a parent that in addition to providing an action plan to address our goals within our own discipline, we need to also anticipate and accept the emotional challenges our families may face.


message 13: by Kristina (new)

Kristina | 7 comments The 10 ways to make a difference are definitely extremely important in our profession and in our personal life. Number one, "You have the opportunity not to be frightened by our anger...to embrace it, to welcome it, and even to invite it on a good day. Obviously, you cannot do it every day" resonated with me. In my field of special education, we work with various students with different needs. I worked with many students who had difficulty expressing their anger. Some teachers view this as a 'bad thing' but expressing anger is good and it's helpful when it's done in an appropriate way. The fact is that the kids I worked with and taught daily faced real life issues at home and it was important to always keep that in mind when teaching. Some kids don't know how to express their anger because they see it being expressed in a physical way or whatever the case may be. Teaching this concept is crucial.


message 14: by Rachel (new)

Rachel | 4 comments Number 3, anticipate and normalize feelings, resonated with me. As genetic counselors, we actually do a lot of counseling. We often counsel on feelings and utilize empathy, which helps us to understand where our families are coming from and what is important to them. Normalization and empathy are our major tools to build rapport and help families know that it is okay to feel angry, out of control, heartbroken, etc. Empathy works wonders.


message 15: by Sara (new)

Sara | 4 comments I loved this part of the book. I think it's very difficult for providers, especially early in their career, to be comfortable navigating their role as professionals and their positioning just as thinking, feeling humans sitting across from another thinking feeling human. Early professionals often have so much pressure to learn process and procedure and feel unsure how to be present as a person.


message 16: by Sara (new)

Sara | 4 comments Rachel wrote: "Number 3, anticipate and normalize feelings, resonated with me. As genetic counselors, we actually do a lot of counseling. We often counsel on feelings and utilize empathy, which helps us to unders..."

Its really interesting to hear about your work as a genetic counselor. I'm a counselor myself and have always been interested in your field. So awesome that you're caring with you such a sense of compassion.


message 17: by Jessi (new)

Jessi Eckersberg | 7 comments I think that number three, normalize and anticipate feelings, was the one that resonated with me most. Especially going into the field of physical therapy that was mentioned, it's important to actively listen to your patients. That's the number one thing you can do is to be mindful and be there with them. Part of that includes knowing what's to come and what news they may be receiving.


message 18: by Shelly (new)

Shelly Berry | 2 comments 5: You have the opportunity to help us know our child.

I have a rare condition called magnesium wasting syndrome. Many times I went to the ER the doctors never heard about my condition. So they called it something convenient like verticco.. Doctors have sent me home and had to return to the ER due to low magnesium.

It is important that doctors have an open mind. If neccesary admit the patent. to find out what the condition is. Then the person's medical condition can be addressed properly.


message 19: by Anna (new)

Anna Merrill | 7 comments This is one of my favorite parts of the book because it is so concrete and straightforward. One of my favorites in the list is number 7, "you have the opportunity to recognize and celebrate our victories." This resonates with me because recently in my practice I have been focused on making sure I take time to highlight children's strengths when talking with parents. Sometimes they may not even realize a strength their child has and that is a great gift that developmental testing can provide to a family when they are usually used to hearing about weaknesses and deficits.


message 20: by Stephanie (new)

Stephanie Tellus | 10 comments I felt that this list was full of extremely valuable advice! Two of my favorite pieces of advice were number 4 and number 5, because I thought they gave unique insight into ways to make a difference in the lives of parents that I had never considered of before. In number 4, I loved the idea of helping parents "re-enter the 'world of normal families" by offering to involve close friends or family members by inviting them to attend a therapy session. I thought this was a simple yet unique way to help parents maintain social support and help "normal families" better understand what they are going through. I also thought the idea of helping a parent know their own child better was an interesting concept. Education is a big part of our roles as professionals and I love the idea that sharing knowledge with parents can help them better understand their child's world.


message 21: by Deanna (new)

Deanna Proimos | 12 comments I think the entire list was really eye opening. As medical professionals, we are trained in how to effectively deliver information to our patients and their families. Until reading this, I really didn't think about asking parents to invite close friends or family members to join us in their therapy sessions in order to gain insight into the child's diagnosis and life. I also liked the piece of advice that talked about making sure you give families a chance to express their feelings about the topics you are discussing. I think it is easy to get caught up in how to deliver the information and that we have to do it within an allotted time frame that we often forget to give the families a second to understand what they were just told.


message 22: by Brett (new)

Brett (brettalicia) | 10 comments The one that really resonated with me was actually number one. It brought to mind a case I had in late September. We were saying that same things that other professionals had said (effectively, our test results had been the same), which was not at all what the family was hoping to hear. There was a rush of initial anger from the father that I easily could have personalized. In fact, he stated, "This was a waste of our time." I tried to validate and then highlight what we were providing that could be new and important (e.g., resources, ways to advocate in school). By the end of the appointment, he seemed to have done exactly what Janice describes in number one: "The great challenge for you is to give us the opportunity to fall apart once in awhile. You may be surprised by how quickly we recover when we are given the opportunity to feel our feelings in the company of experienced and caring professionals.


message 23: by Ty (new)

Ty Ryan | 4 comments As a student who will work as a professional in this field, I really appreciated this section of the book. A few of these pieces of advice have been briefly discussed in classes like “celebrating the small victories” and “validate feelings.” But I really appreciated the way Janice Fialka explains each of these from personal experiences and stories. While each pieces of advice were great and helpful, numbers 3, 4, and 5 particularly resonated with me. These are things that can be done rather easily, if we simply slow down and remember to take the time to do it! They were a great reminder that in this field we wear many hats (e.g. a listening ear, while validating feelings, an advocate, and a teacher) to help a family feel hear and supported


message 24: by Philip (new)

Philip | 3 comments Of the ten ways I could help make a difference, I found that number 7 resonated the most with my beliefs and style as a healthcare provider: "You have the opportunity to recognize and celebrate our victories". My overall outlook on life is very positive, and I remain a very hopeful individual in times of difficulty. Although all ten ways are relevant, I find myself thinking that number 7 will pave a road for me to impact a child and his/her parents the most. By being in the present and celebrating the small victories, I honestly feel that it will make the whole transition and process easier - and happier - and that falls right into my own perspective.


message 25: by Ellyn (new)

Ellyn | 12 comments Many of the ways in which professionals can help resonate with me. I often try and connect families to other resources for supports, like organizations or even other families, or provide them information via informative/educational materials. I also try and focus on small victories, and recognizing progress over time. However, one thing that is not on the list, but that I think is very important is described later in "Feelings: The F-Word in Parent-Professional Partnership". Many professionals do not receive training or education in navigating feelings: their own, families, the people with whom they work, and this is a fault in the current professional training programs. Navigating feelings is SO important! I've learned it really doesn't matter how much you know, or how valuable your information may be if no one is listening to you (in this case, because they are trying to deal with their feelings!!). So, in navigating our own feelings as professionals and helping families navigate their feelings - we create stronger relationships and are more effective overall.


message 26: by Caroline (new)

Caroline | 10 comments Kristina wrote: "The 10 ways to make a difference are definitely extremely important in our profession and in our personal life. Number one, "You have the opportunity not to be frightened by our anger...to embrace ..."

I totally agree Kristina. I think a lot of time professionals are cautious to parallel these emotions and jump into these feelings with parents because it can be uncomfortable, and you want to have boundaries, etc. But when you're someone who deals with these feelings on a regular basis, it's hard not to be understanding that emotional situations produce emotions! I can't see care not including recognizing and normalizing that these things produce emotions


message 27: by Kayla (new)

Kayla Welker | 4 comments I definitely appreciated this section of the book. I think all of these items on the list are things we know, but that we often forget, with our huge caseloads and our endless responsibilities and commitments. Though all of these things resonate with me in some way or another, I think the one that resonated with me the most was "8: You have the opportunity to remind us how far we have come and how much we have accomplished." I think this is so important, regardless of your discipline. Every individual, with or without disabilities, has strengths; and in our practice, we have the opportunity to spotlight those strengths and use them to guide our intervention or plan. For these families of individuals with disabilities, they hear a lot of things from healthcare providers about how much intervention or therapy is needed, needing to see this specialist, needing to get this "fixed," but oftentimes the positivity or celebration of strengths isn't addressed because there are more concerns about limitations. As healthcare providers and interventionists, we have the opportunity to celebrate the strengths and the positivity, even if they may be small moments. Taking a couple of minutes in your conference with the family to remind them what a remarkable job they are doing with all of the challenges they're facing will never be insignificant; and it can make a world of a difference for a family that feels that they are a fighting a constant uphill battle.


message 28: by Gabriel (new)

Gabriel Anzueto | 6 comments Number 3: Anticipate and normalize feelings-

As physicians we fault in addressing feelings because it is hard working with sick children, seeing parents grieve seeing their baby connected to a ventilator, IV drips and cardiopulmonary monitors and unfortunately in my personal experience having to inform parents that their child will most likely not live too long. To keep our sanity as human beings we place feelings in a box, barrier it in our subconscious. We are so in emotional "debt" that our minds might not have room for the emotions of others. This is not a healthy way, but unfortunately a very common way, for us to deal with feelings.

Normalizing feelings through recognizing the feelings of other, especially parents we work with, I believe is advantageous as it can give us a way to open up ourselves and be vulnerable to help those we help feel that we care about them and their hard situation.


message 29: by Hsiu-Wen (new)

Hsiu-Wen | 7 comments Number 1 was the one that really resonated with me. It reminds me the days while I was still in the hospital and working with families. How those families deal with a variety of emotions everyday, and how important it is that professionals listen to them, respond them and acknowledge them. I believe this could totally make a difference on partnering with families, and building the trust with them.


message 30: by Lindsey (new)

Lindsey (lindseyscoso) Number 5 resonated with me. "You have the opportunity to help us know our child." I've had the privilege and opportunity to work with several families with children with disabilities, and I have never thought of my job responsibilities in that way. I felt that this portion of the book was such a great way for a parent to articulate their feelings with professionals and service providers, and helps to humanize the process that we are a part of.


message 31: by Lindsey (new)

Lindsey (lindseyscoso) Anna wrote: "This is one of my favorite parts of the book because it is so concrete and straightforward. One of my favorites in the list is number 7, "you have the opportunity to recognize and celebrate our vic..."

I loved this also! I think it is so important to be strengths-based and to highlight every positive. I think meetings so often focus on the deficits, and it is all the more significant to point out everything that is going well!


message 32: by Esther (new)

Esther Are | 7 comments Kristina wrote: "The 10 ways to make a difference are definitely extremely important in our profession and in our personal life. Number one, "You have the opportunity not to be frightened by our anger...to embrace ..."

This is definitely the one that stood out to me, even as I read the other 9. When someone expresses anger, my initial reaction is to take it personal. I believe that this will definitely be a challenge for me in the future when working with parents who are upset. In addition to dealing with parents' frustration, working with students who are upset will be a challenge as well. I have to "understand the origin" of those feelings and not take anything personal.


message 33: by Kirsten (new)

Kirsten Harold | 10 comments The ones that resonate with me are number 7 and 8. Positive feedback is important for everyone to recognize accomplishments. It gives a sense of motivation to keep going and a not to give up and a feeling of validation that what you are doing is right. Especially professionals have a big role in this as sometimes people on the outside might not be able to see the progress that the child is making.


message 34: by Charron (new)

Charron Johnson | 7 comments Anna wrote: "This is one of my favorite parts of the book because it is so concrete and straightforward. One of my favorites in the list is number 7, "you have the opportunity to recognize and celebrate our vic..."

I also really like #7. As providers we are part of the patient an family's team. In many cases we are one of the few people who have been there since the beginning of the patient's journey. We may also be one of the only people who the family is honest and open with about their specific struggles and victories so if we do not celebrate with them who will?


message 35: by Torie (new)

Torie | 7 comments Jamie wrote: "The one that resonates with me in number 2. This difference talks about the loneliness parents can feel during this journey. This is something I am very passionate about because I do not think we g..."

I agree with you Jamie, we shouldn't assume parents have fully accepted, or "grieved" this new diagnosis quickly. Checking in with how they are doing is very important. By taking a few minutes, like you did to see how they are can have a positive change not only on their own mental health, but their family as a whole. For as many services assisting the family, we want to use those as supports/services to also help the family not feel alone in navigating this new diagnosis.


message 36: by Brianna (new)

Brianna Lambrecht | 8 comments I absolutely adored the framing of these '10 ways of making a difference'- framing them as an opportunity for professionals in the field, rather than stating [you should do 1..2..& 3), allows for us to go into it with a different perspective. By doing this work, we will have an ample amount of opportunities to help families manage the pain and struggle that comes with the journey. If approached the right way, these opportunities can be life giving- not just for the child or their family members, but for us. Being willing to engage with others during some of the natural painful parts of the human experience brings us all closer together.
That being said, numbers 1, 3, and 9 resonated with me. I think that one of the greatest 'interventions' we can offer is our presence, a listening ear. We don't always have answers, and sometimes that's okay- families still need to trust that helping professionals are actively present with them on this journey, understanding that a wide range of emotions are a part of the process.


message 37: by Emma (new)

Emma Lynch | 10 comments Stephanie wrote: "I felt that this list was full of extremely valuable advice! Two of my favorite pieces of advice were number 4 and number 5, because I thought they gave unique insight into ways to make a differenc..."

I also really liked number 4. I think one of the additional benefits to inviting neighbors and other family members to therapy sessions is that listening to you explain the information to other people who have even less background understanding can start to give families a template for how they will eventually do this when they are advocating for their child later down the line.


message 38: by Vivian (new)

Vivian | 7 comments I really resonated with number 9. Sometimes a parent just needs someone who is willing to listen or even someone who is willing to just sit beside them during their "dark place". While most of the time I feel I go into cheerleading mode and help recognize/celebrate victories, being a partner during the bad times is just as important.


message 39: by Vivian (new)

Vivian | 7 comments Anna wrote: "This is one of my favorite parts of the book because it is so concrete and straightforward. One of my favorites in the list is number 7, "you have the opportunity to recognize and celebrate our vic..."

I agree Anna, I had never thought about something as simple as inviting close friends/family members to a session to help them "re-enter the world of normal families". As an occupational therapy student I know a lot of my own friends and family members have little knowledge about what I really do. By having these visits, others outside of the immediate family can gain a better understanding of activities addressed in therapy and let the professional bridge the gap to take that burden off of the parents.


message 40: by Amanda (new)

Amanda Montbriand | 7 comments Sara wrote: "I loved this part of the book. I think it's very difficult for providers, especially early in their career, to be comfortable navigating their role as professionals and their positioning just as th..."

I totally agree with this, Sara. One question I always ask professionals that I am shadowing or working with is how they go about presenting information to parents. I have never had the experience of having a sibling or a family member with a disability so I have never personally experienced being on the other side of these discussions. The way we present information to parents is critical to their perception of us as professionals, their role in their child's care, and most importantly of their child's disability.


message 41: by Holly (new)

Holly Clark | 2 comments I really connected with this section of the book. Providing for patients with disabilities, I was really able to connect with #7. As a health care professional, it is so important to celebrate all the little victories with patients AND their families, even if they may be smaller than a so called "normal victory" with other patients. Not only does this boost the confidence of all members involved in the care of the child, but it forms a positive association between the patient/family and the provider and the provider's setting. It builds TRUST, also, which can be hard to find in our healthcare world. I think it also builds appreciation from both sides--it helps families and caretakers appreciate their providers but it also allows for professionals to take the time to truly appreciate their patients and their successes.


message 42: by Anna (new)

Anna | 4 comments While more than one of the 10 ways you can make a difference resonated with me, the one that stuck out the most was "you have the opportunity to anticipate and normalize our feelings". I think that family/caregiver education is an essential and often undervalued part of healthcare. It is so essential that healthcare providers are both realistic and empathetic in preparing caregivers for the challenges the might face, as well as the joys they might have going forward in the parenting / caregiving journey. Providing this kind of education and support benefits both the individual with the disability as well as the family. Listen, clarify, and respond empathetically and with an open mind.


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