Let's Chat... National Child Abuse Prevention Month and Shaken Baby Syndrome (with Michelle Fishpaw)

#071. Michelle Fishpaw, a mother and teacher, is passionate about National Child Abuse Prevention Month, which falls worldwide in April. In these next 30 minutes you'll find out why. 

Let’s Chat episodes are where I (Claire Sandys, host) chat one-on-one to a guest who has experience or expertise in a particular area of loss.

And my guest here is Michelle, joining me from her home - where she lives with her husband and two daughters - in Rhode Island, USA.

In 2000, her baby daughter Claire - two days before her first birthday - was shaken by a sitter, resulting in Shaken Baby Syndrome. Against the odds Claire survived and has just turned 24 years old, but she will always live with the long-term effects of that abuse. 

We explore what this trauma was like for a newly married couple, how they have advocated and changed legislation to speak up against such a preventable action, and what advice is given out to new parents.

And with each Let’s Chat guest I'm building a whole shed of tools to help you face and get through loss. So let’s see what Michelle adds to my growing list.

For more about Michelle and her book (including requesting a signed copy by her and Claire) visit: https://michellefishpaw.com/

'Because I said I would' YouTube video of Claire: https://www.youtube.com/watch?v=SM_tKy1z_l0

Social media links:
https://www.facebook.com/profile.php?id=100075803932248
https://www.instagram.com/claires.voice/
https://www.twitter.com/michellefishpaw
https://www.linkedin.com/in/michelle-fishpaw-a59978226/ 

National Child Abuse Prevention Month: https://www.childwelfare.gov/topics/preventing/preventionmonth/

National Center on Shaken Baby Syndrome: https://www.dontshake.org/

The power of sharing your story: https://www.groundworkohio.org/post/the-po

Transcript

Claire : 0:00

Hello there, and thanks for joining me for another episode of Let's Chat. I'm Claire Sandys, host of The Silent Why podcast and blog writer for thesilentwhy.com. A podcast exploring how and where we can find hope through grief and loss. In these Let's Chat episodes, I talked to a guest who has experience or expertise in a particular area of loss. Today, for the first time, my chat is on a subject that coincides with the national month but it's attributed to, because April is National Child Abuse Prevention Month. Now, the term child abuse can mean many different types of grief, pain and loss, so this month does cover many different charities and organisations. In this episode, I'm chatting to Michelle Fishpaw, about the one particular area that has affected her family -Shaken Baby Syndrome. Michelle is a teacher who lives with her husband and two daughters, Claire and Grace, in Rhode Island, USA. In 2000 Michelle's daughter Claire, two days before her first birthday, was shaken by a sitter. Against the odds Claire survived this trauma and has just turned 24 years old. But she lives with epilepsy and a brain injury that results in slower processing for her. Michelle is actively involved in creating awareness and changing legislation to help prevent other families having to face this, and is keen to be a voice for change against such a preventable action, including education for new parents about the dangers of Shaken Baby Syndrome, and the triggers that can occur in parents, sitters, and other adults. Michelle wrote a book about her story called Claire's Voice, and she explains

Michelle: 1:29

No mother should have to witness her helpless baby in that condition. No infant should have to endure what she did. She could not escape. She could not get help. She had to bear the pain. She had to suffer. She did not have a choice. She did not have a voice when she was victimised. This became about finding Claire's voice and telling our story.

Claire : 1:58

Michelle is spurred on to help others by Claire's own words, 'Mom, this book is going to help so many people. I know it's taken a lot out of you, but we can never give up'. For those of you that are new to these Let's Chat episodes, I want to capture some useful magic a bit like the Herman's in our other episodes. And at the end of each episode, I ask our guest, what sort of tool their subject would be. So let's see what Michelle adds to the shed. I started this conversation by asking Michelle to introduce herself and to also tell us a little bit about what happened on that day in 2000 when she went to collect Claire from the new sitter's house. So grab a drink of your choosing. Maybe that depends on what time of day it is where you are enjoying me and Michelle as we chat about National Child Abuse Prevention Month.

Michelle: 2:46

Hello, I'm Michelle Fishpaw. I'm the author of Claire's Voice. And I'm also a licenced massage therapist. I live with my husband Jon, my two daughters Claire and Grace and our English Bulldog, Rose. I'm also a teacher. And in 2000 on the fourth day of child care, I went to pick up Claire from the sitter at the sitter's house. It was part time care. Just a little background on the sitter; she was in her mid 30s She was an aide in the school district in the area and everyone was going to her, she watched a paediatricians child, she watched a news anchors child, she came highly recommended from a local referral agency. So I felt very lucky to get Claire into this spot. I remember telling my mom who is now a retired ER nurse that we're so lucky to find such a great environment for Claire to blossom and grow. So on the fourth day, when I arrived, and when she opened the door, I heard an eerie cry that I had never heard before. And I still remember it to this day and chills run down my spine. I didn't know it was our own daughter, Claire, at the time because she watched other children along with her own. Heard that cry, I ran up to the baby gate, and I realised it was Claire at that point and said'Mommy's here. Mommy's here, Claire', and she was 11 months old. I remember her, she was on her stomach with her head down, I remember her trying to lift her head to look at me and her eyes rolled to the back of her head and her head went back down on the floor. I went through the baby gate, gently turned her over and I'll never forget her blue eyes the pupils were so dilated. It was like two black marbles were staring back at me. At that point, I knew that 911 needed to be called, I instructed the sitter to call 911. I remember asking the sitter, you know, 'why didn't you contact us? Why don't you get Claire help?' Any adult that would walk into the room that didn't even know Claire would know that she needed help. The sitter went silent. And I just remember hearing the sirens. The squad arrived. And at one point, Claire's breathing was so shallow I thought she had stopped breathing before she went unconscious in my arms, she started vomiting white foam. And I was so thankful the squad was there. They transported Claire and I to Children's Hospital, which took around 10 minutes to get there. So I was so glad we were so close to the hospital to get her the help that she desperately needed. When we arrived at the ER the doctors were trying to figure out asking us questions, and I felt so helpless because I had no answers as to what happened that day. We dropped off our healthy 11 month old baby and she was fighting for her life. So I remember the ER doctor asking me, 'Is there any chance she could have gotten into any household poisons?' And I said,'Well, anything's possible because we have a new sitter'. As soon as she heard those words, she ordered a CAT scan. And that's when the results came back. And they saw the subdural hematomas on both sides of her brain and ordered a retinal scan, saw pools of blood behind both eyes, transferred her to NICU. The abuse team immediately was called and law enforcement. And that's when they diagnosed her with Shaken Baby Syndrome.

Claire : 7:11

What are the sort of emotions... there must be a lot of fighting for priority at that point that you've got the shock that you're trying to contend with, you've got the grief of what's happening, you've got the mother kicking in just trying to look after and protect your child. What was that like?

Michelle: 7:25

I remember feeling so numb. I was in shock. I couldn't even believe that someone, I thought an accident could have happened. I it was I still can't believe someone harmed an innocent baby, a mother that was a little older than me, who had her own daughter, she harmed Claire and Claire was fighting for her life. I just could not believe someone could hurt another human being let alone a helpless infant.

Claire : 8:03

There's a sort of a different element to it when there's something intentional at play, rather than it being sort of a natural thing that happens. It's an awkward question, isn't it? But is it an intentional thing with Shaken Baby Syndrome? Does it tend to always be something that's been intended? Or is it the byproduct of something else that happens in the person that's doing it?

Michelle: 8:22

So that's a good question, Claire, from the research that's done, I'm not really 100% sure. I know that the intention of the caregiver is to try to stop the inconsolable crying. I do know that's a trigger. Unfortunately, when the person shakes the baby, the baby is quiet because of what's happening with the brain moving around in the skull. And it's almost like a whiplash movement. And they the National Centre for Shaken Baby Syndrome, they have experts that speak. We just attended the International 18th and the National Conference in Philadelphia this past October where I presented and shared our story of Claire surviving because one out of four infants pass away, unfortunately, and if they do survive, they live with lifelong disabilities.

Claire : 9:33

So what are Claire's long term effects of that?

Michelle: 9:36

So she was on an IEP and school, Individualised Education Plan, where she needed help and modifications for her academic studies. She spent eight days in the hospital after this happened and she qualified for Disability Services and also all therapies for paediatric rehabilitation; speech services, physical therapy, speech therapy and occupational therapy. And after this happened, everything that she had gained developmentally, it was like wiping the slate clean, and starting over from ground zero. So I left my job at that point to stay home with her and worked with her. I probably spent countless hours taking her to several doctor's appointments, several therapy appointments, to try to gain back what was taken away from her. She was severely delayed. And the prognosis no one could tell us what her outlook would be like where she would be at this age. Now she's just turned 24 years old, she has epilepsy, which is managed by medication, and she is able to work, but she does get tired with an eight hour shift. So she works three eight hour shifts during the week. And she just really has to watch how much water she's taking in, make sure she's getting enough rest. And she's compensating all day long. So by the end of her day, she's exhausted.

Claire : 11:41

Is that something that she will have for life?

Michelle: 11:43

Yes, absolutely. She was able to graduate high school on time, and she did take some college coursework, that she was able to pass academically with tutoring, and modifications to her coursework. So we're very, very blessed and proud of her. That's the blessing that she is able to do as much as she is.

Claire : 12:14

Is it something that people would notice if they met her for the first time? Or is it something that she has to just deal with sort of on our own privately that she gets tired and things just take their toll on her a bit more?

Michelle: 12:23

That's a good question. So for people that don't know, Claire, if she walked in and met them, and if they initiated the conversation, they might not notice that first, a lot of people think she's shy. A lot of people sometimes it takes her a longer time to process information when asked a question, or at work when she's dealing with different tasks. If she has multiple things that she needs to do in her day, it takes her a longer time to accomplish what other people do in a shorter amount of time.

Claire : 13:03

And how has this affected the dynamics of your family, because obviously all these kinds of things put a lot of pressure on relationships?

Michelle: 13:08

So Grace is three years younger than Claire. And we've never asked her to be protective of Claire. She just automatically took on that role. And they're so close. We're very lucky the girls have a great relationship and support each other and have each other's backs. When this happened Jon and I were only married one year. So we were very early in our marriage. And at the hospital, I had Jon promise that if Claire survived, because everything was so touching go that we would not let this define us as a couple. And that we would choose to make a difference and advocate for others. But you're absolutely correct this did take a toll and still does on our marriage from time to time. And that's one reason I really wanted to share our story for people that are struggling out there to give them hope to let them know there is a light at the end of the tunnel. Because sometimes life is hard. Sometimes we do struggle and it's okay. It's okay to not always have all the answers all the time. Just keep working hard. Keep trying. Even if you take baby steps to reach your goals.

Claire : 14:46

It's an amazing thing to be recognising so early on as well in a marriage and so soon after the trauma you'd been through with Claire and I know that you have had that 'we do want to advocate for other people'. So tell us a little bit about the legislation that you've changed and Claire's Law.

Michelle: 15:00

Yes. So, in 2008, just eight years after Claire was injured on the exact date, actually which we weren't anticipating, we and other advocates got Claire's Law passed. And it was the first law nationwide on the state of Ohio, where we used to live we now live in Rhode Island. But the law was so important to pass because it is the first law to track Shaken Baby cases to identify what a big issue this is, that's still unfortunately happening today. It's very prevalent in society. So it also helps hospitals pass out educational materials to new parents to educate, and let them know what Shaken Baby is to provide the information so that they can make informed decisions for child care and and for themselves.

Claire : 16:07

Yeah, and what sort of things do they suggest? How can you help prevent something like this?

Michelle: 16:12

So the the website, the national centre, website, dontshake.org is extremely helpful. They have a purple crying programme, that they state that developmentally, infants have a period of purple crying, inconsolable crying, to where babies, you know, you, you make sure that they're fed, you change their diaper, and sometimes babies cry, and that's okay. And it's okay for parents to make sure the baby is in a safe place in their crib and walk away, take a break, recollect yourself, and that's okay. That's okay to do. If I had one takeaway, that would be the takeaway.

Claire : 17:01

Yeah, it's also such an important thing.

Michelle: 17:03

Yes, just to know that it's okay to take a break and to walk away, and to come back. Because during that time, the inconsolable crying could could be very frustrating for the caregiver.

Claire : 17:19

Like so many other things, in some ways, it feels so, so obvious on one level, but then when you're in that frame of mind, and you just want to help the child to give yourself permission, that actually the better outcome might be that the child continues to scream, rather than I lose something in me. And then you know, something awful happens afterwards. So I think that's just such a nice thing to put out there to remind people because, you know, when you're taking a new baby home, I'm getting these sorts of things, they're not even anywhere near your your list of like, what if I can't do this, if they keep crying, that's something if you've been told might just come to the front of your mind and be like, 'Oh, actually, I'm gonna walk away'.

Michelle: 17:53

Exactly. And new parents are exhausted, they're, they're exhausted, they're not getting much sleep. And just like you said, to give themselves permission to place the baby in a safe place, and to take a break.

Claire : 18:08

And the reason we're talking about this today and in April is because it's National Child Abuse Prevention Month. So tell us a little bit about what that is, what does it actually acknowledge and try and do?

Michelle: 18:19

Yes, so it's, it's worldwide. And it's a time to, to educate and advocate for preventing child abuse. And, and by being compassionate, and elevating your voice, and I'm choosing to share our story, to help others to create hope. It can be a really powerful thing, because child abuse is totally preventable. And my hope is through educating the public and and talking about this, what can be a difficult subject, my hope is for people to learn something new, and take away and to talk about this difficult information. This information is difficult to hear. And a lot of times in society. People aren't ready to hear what I have to say. In fact, at some events, if it's new mothers or grandmothers, they have to walk away often, and then they come back just because the information is so shocking.

Claire : 19:43

Yeah, it must be hard to get people to try and engage with something that people don't want to really think about. Like you said, it's preventable, which makes people very uncomfortable because it means we could be stopping it. But also there's this element of just not wanting to talk about these tougher subjects, especially when they involve nasty things like abuse, and then also children.

Michelle: 20:02

Exactly.

Claire : 20:03

Do you have extra things that you do during this month, I'm not involved in the national month for anything, so does that change any of the work you're doing? Or is it just something that's just useful to be out there?

Michelle: 20:13

So I'd like to book extra events focused on this topic, because it's so close and dear to my heart and has affected our lives. So during the month of April, I always make sure that I'm reaching out and connecting with different community resources, and always trying to find different ways to speak about preventing child abuse in some shape, or form. And on the 21st April, I've been asked, requested to speak at the third annual Prevent Child Abuse Conference at a hospital in California. So that's another event that I'm doing during this month, and just even in the community, just when people ask,'Oh, how are you doing? What are you working on?' And I share our story. And it's very powerful. I found that it's very powerful, especially with, with men and women, but especially other mothers, it really touches their heart.

Claire : 21:27

Has it been something that's been quite difficult for you to share about with others, because I'm sort of getting that looking at you as a family visually, you probably look like you're all normal, and everything's good. But then, when you struggle like this, with things that are in the home, especially it can be very hard to voice that you might be struggling or that you might need help. Has that been quite tricky?

Michelle: 21:46

Yes, especially in the beginning, it was very difficult. After this happened, I was holding down the fort on the homefront. I asked my husband Jon, to do the advocating had that point, because it was taking everything I had to deal with Claire being so fragile, and doing all the work with her the one on one homework from the therapists and making sure she was getting the interaction that she needed. So in the beginning, it was difficult. And for two years, I didn't even know who I was, I used to be so trusting. It changed me as a person to where the only person I trusted was my mom to watch the girls if Jon and I were to go out somewhere it was for a very short time. Then, when Claire was in third grade, that's when I started writing the book.

Claire : 22:48

Tell us what the name of your book is.

Michelle: 22:50

So the name of my book is Claire's Voice. It's named after my oldest daughter, Claire. And I'm so glad I waited until the girls were older to publish my book because it was definitely a family project. It was very hard to write, to be so open, I wanted it to be so authentic, to take the reader on our journey so that they they feel like they're right next to me, going through everything. And I wanted to make it relatable to all people, even people who haven't experienced Shaken Baby Syndrome, anybody that has been through an unforeseen circumstance in their lives. I wanted to make sure they could relate to the book. And new mothers could relate to the book, or even women that don't have children, or men that are reading the book. I just wanted to really open up and dive in deep to raw emotions. I remember during the editing process, my husband said,'Michelle, are you sure you want to share all of this? Are you sure you don't want to sugarcoat anything or edit out, remove certain information?' And I said'absolutely not', I said, 'in order for this to truly help people, we need to share everything'. In life things are not sugar coated for us when we're experiencing them, so it should not be sugar coated for others. It was very cathartic for me it was very therapeutic. And I didn't realise how much I had to say. A part of that process for me personally, was not forgetting what happened but forgiving the sitter in order for me to move on and to not carry that heavy burden all around day-to-day. And once I was able to forgive, but not forget, I was able to express, find my words and express them through writing. It was very freeing, very liberating. My faith has been a very big part of this with my family and friends, having a strong network of support. That helps me get past being angry. And then I was so sad, I experienced extreme sadness, that this happened to Claire, and happened to our family. And I remember having a conversation with Jon. And I said, 'Why did this happen? Why does this happen to anyone? Why did this happen to us? How did this happen? We checked all the boxes and checked and double checked to find a nurturing place for someone to take care of our child.' That's such a trust, trusting relationship. And when that was broken, it broke my trust. For someone that used to trust everyone, to not trusting anyone that is a very lonely, lonely existence, experiencing that and going through it, and you feel so alone. And that's where advocating really helped me because it connected me with others who were in a similar situation, so that I did not feel so alone. And it empowered me to grow and learn as much as much as I could and to connect with others, and to help move forward to elevate myself through elevating my voice. And at the same time, I had two girls watching me, you know, my daughters, and I wanted to make sure that I was a strong role model for them, with my actions, to share situations, but not to let the situations define who you are as a person, because a lot of times I feel like things in life are going to happen to people. And it's what people do after something happens, that really can be powerful and make a difference.

Claire : 27:47

That's amazing, because it's a very vulnerable place to be when you do something like that. But it is what helps people more than skipping over the other stuff. And I think being in communities of people who've been through something similar, it's very powerful. But people who can't do that, or can't find that community, then books can be so good for just, you know, finding someone that you connect with in a very similar boat in your own home by reading their story and just feeling less alone. So it's a lovely way to to get things out there. Yeah, well done for doing it. Because like I said, it's, it's a vulnerable place to be.

Michelle: 28:17

Absolutely, it is very vulnerable. I remember before the book was published, it was in the queue. And I remember Jon reaching out to the people that he worked with, and he said, 'My wife is publishing a book'. And they said, 'Oh, congratulations'. And he said,'there are some things that I need to tell you'. And our private lives are very different sometimes from our public lives and what we show people, and they had such a positive response, that it was so heartwarming.

Claire : 28:56

So just going back to like the national month, which is obviously a great idea, because it helps put the subject out there a subject that might otherwise remain behind sort of closed doors, it makes people think about it, what do I think about this? How would I respond? How could I help other people if they see maybe a young mother that struggling? It just raises that situation in their own mind to think about and maybe help others? Are there any other things that these national months do that you think are really valuable?

Michelle: 29:22

Like you said, it brings to the forefront, an issue in our society of recognising that this is happening to our children, and our children are the future and through educating the public. I really hope that if we can just save one child or prevent one situation of abuse, then by talking about it and educating people I'm just very hopeful and compassionate about out speaking out about it advocating for other states in the United States that might not have Claire's Law in place. And internationally that at least it may be easier, since we laid out the groundwork because I know in the United States, other states tend to say, 'Oh, well, this state has done this. And since the groundwork has been done, it's easier for them to not recreate the wheel'. So I'm just hoping internationally, my vision is to take this to an international level of awareness through educating the public and helping others to hopefully prevent this from happening, or at least decreasing the numbers.

Claire : 30:53

So as a final question, we were talking about National Child Abuse Prevention Month, and is a useful tool to help raise awareness of these kinds of situations across the world, really. But if you were going into a tool shed and you're picking out a tool that represented National Child Abuse Prevention Month, what kind of tool would that be?

Michelle: 31:11

So I would pick gloves to put on, I love gardening, I love connecting my hands with the soil and just the feeling but sometimes, we need gloves to put on to protect us from the weeds from the roots from the the work that we're doing, because gardening is not always easy. Sometimes it's a bit of a struggle. But at the end, we're planting seeds that turn into beautiful flowers. So I'm hoping by putting my gloves on, that I'm able to plant seeds in our community to provide a beautiful, flourishing garden.

Claire : 31:58

My first pair of gardening gloves, brilliant, I really do enjoy wearing my glove when I'm gardening. And they're such a lovely analogy for work that needs doing and it's so important, but also the need for protection in that work, whether it's for the children or other people or parents, or even protecting Michelle herself as she steps into what can be a very thorny area of work. If you want to find out more about Michelle, you can contact her or find out about her book at www.michellefishpaw.com, where you can also request a signed copy signed by Michelle and Claire, I'll put this and plenty more links from Michelle in the show notes. There's also a link in the show notes to a YouTube video by 'Because I said I would', where you can see images of Claire as a baby and Claire advocating for herself. This was a very moving and unexpected moment for Michelle, a motivational speaker came to Claire's High School. And Claire wanted Michelle to hear him while they were there, there was a breakout studio where you could write a promise on a card and then share your story. Michelle wasn't expecting to share their story that day. But it turned into a very powerful moment for her to see Claire speaking up and sharing in this way for the first time. So you can check that out. And if you want to hear a very inspiring firsthand story about the complicated grief of Shaken Baby Syndrome, specifically when it results in a young death, listened to Loss 36 of 101 loss of a young granddaughter with Greg Williams. In that episode we explored the grief of a grandparent is one of our 101 losses. Thanks for listening to The Silent Why podcast. If you've got a subject you'd like me to chat to an expert on. Please get in touch via social media or the website or via email, thesilentwhy@gmail.com and let's chat...