WEBVTT 00:00:00.720 --> 00:00:03.510 - There's no way to transition this easily, 00:00:03.510 --> 00:00:07.080 so I'm just gonna dive in and introduce our presenter 00:00:07.080 --> 00:00:09.485 for this morning, Stephanie Lucas. 00:00:09.485 --> 00:00:14.100 She will be presenting on Guilt, Grief, Anger & Ambiguity: 00:00:14.100 --> 00:00:17.827 Supporting Families Through the Emotions of a CMV Diagnosis. 00:00:17.827 --> 00:00:20.730 Stephanie is a licensed marriage and family therapist 00:00:20.730 --> 00:00:23.910 in Oregon, Hands and Voices Guide By Your Side Parent Guide, 00:00:23.910 --> 00:00:26.400 and a mom to a daughter with hearing loss. 00:00:26.400 --> 00:00:28.380 She is certified in EMDR, 00:00:28.380 --> 00:00:30.270 one of the leading trauma treatments in the country, 00:00:30.270 --> 00:00:32.040 and owns a private mental health practice 00:00:32.040 --> 00:00:34.020 in her hometown in Central Oregon. 00:00:34.020 --> 00:00:37.224 So with that, thank you, Stephanie. 00:00:37.224 --> 00:00:42.224 (audience applauds) - Thank you. 00:00:42.597 --> 00:00:43.770 You see what they did there. 00:00:43.770 --> 00:00:44.700 They made everybody cry 00:00:44.700 --> 00:00:47.523 and then called in the therapist to clean it up. 00:00:47.523 --> 00:00:48.900 I get it. I get it. 00:00:48.900 --> 00:00:50.010 And it's a great segue 00:00:50.010 --> 00:00:53.304 because we're talking about grief and anger today. 00:00:53.304 --> 00:00:55.650 I'd like to thank you for the introduction. 00:00:55.650 --> 00:00:57.565 I am a family therapist in Oregon 00:00:57.565 --> 00:00:59.944 and a Hands and Voices Parent Guide 00:00:59.944 --> 00:01:03.390 and we're just gonna talk about the emotions of CMV 00:01:03.390 --> 00:01:05.160 and how to best support families 00:01:05.160 --> 00:01:06.900 when they're getting a new diagnosis, 00:01:06.900 --> 00:01:09.480 as well as just on the experience of grief, 00:01:09.480 --> 00:01:10.863 anger, and ambiguity. 00:01:12.450 --> 00:01:15.930 I'll start off with a little of our own family story. 00:01:15.930 --> 00:01:16.763 Like she said, 00:01:16.763 --> 00:01:18.780 I've been a practicing family therapist for 10 years. 00:01:18.780 --> 00:01:21.270 I'm also certified in EMDR, which if you don't know, 00:01:21.270 --> 00:01:23.923 stands for Eye Movement Desensitization Reprocessing. 00:01:23.923 --> 00:01:27.039 It's one of the leading trauma treatments in the country. 00:01:27.039 --> 00:01:30.319 And I really specialize in anxiety, trauma, communication, 00:01:30.319 --> 00:01:32.310 and teenagers, lucky me. 00:01:32.310 --> 00:01:36.330 I also recently became a Hands and Voices Parent Guide 00:01:36.330 --> 00:01:37.583 in Oregon. 00:01:37.583 --> 00:01:39.390 I'm the only CMV mom on our parent guide panel, 00:01:39.390 --> 00:01:42.240 and so I get to interact with all the CMV parents 00:01:42.240 --> 00:01:44.320 that we've been discovering over the last few years 00:01:44.320 --> 00:01:46.353 and try and connect our community. 00:01:47.250 --> 00:01:50.310 This is our newborn pictures with our CMV kiddo, Riley. 00:01:50.310 --> 00:01:53.400 So I have an older daughter, Addison, who's seven, 00:01:53.400 --> 00:01:54.510 and Riley is four. 00:01:54.510 --> 00:01:55.560 She's our CMV kiddo. 00:01:55.560 --> 00:01:58.113 And then Grant is my husband, honorable mention. 00:02:00.664 --> 00:02:02.610 A little bit about our story. 00:02:02.610 --> 00:02:05.970 So I contracted CMV at 39 weeks pregnant. 00:02:05.970 --> 00:02:07.650 I had just started my maternity leave 00:02:07.650 --> 00:02:10.170 and I was laid up in bed. 00:02:10.170 --> 00:02:12.060 This first picture is a picture of my nightstand 00:02:12.060 --> 00:02:13.440 'cause I thought it was so ridiculous 00:02:13.440 --> 00:02:14.567 how many different things I had 00:02:14.567 --> 00:02:17.670 'cause I was so sick and struggling so much 00:02:17.670 --> 00:02:21.030 and so terrified to give birth au naturale 00:02:21.030 --> 00:02:24.060 in the middle of having this huge virus 00:02:24.060 --> 00:02:25.260 that I didn't know what it was. 00:02:25.260 --> 00:02:27.067 And I talked to my midwives and they said, 00:02:27.067 --> 00:02:29.584 "Rest. It's probably that pre-labor flu." 00:02:29.584 --> 00:02:31.440 And so I did. 00:02:31.440 --> 00:02:34.950 I rested, and I was at urgent care getting a prescription 00:02:34.950 --> 00:02:38.133 for my sinus infection when I got home and my water broke. 00:02:39.060 --> 00:02:41.850 Six hours later, Riley was born at 10 pounds 00:02:41.850 --> 00:02:45.150 and the picture of health, and we brought her home. 00:02:45.150 --> 00:02:47.550 And because I had an out-of-hospital birth, 00:02:47.550 --> 00:02:49.980 we ended up going to the hospital for our hearing screening 00:02:49.980 --> 00:02:51.960 a couple of weeks later. 00:02:51.960 --> 00:02:54.570 She failed and they told us it was probably fluid, 00:02:54.570 --> 00:02:56.370 and it was probably a glitch of the machine, 00:02:56.370 --> 00:02:58.050 and that we would get a referral 00:02:58.050 --> 00:02:59.580 and that everything would be fine, 00:02:59.580 --> 00:03:02.523 which I know a lot of parents in this room can relate to. 00:03:03.450 --> 00:03:06.030 When we went back, we got our diagnosis. 00:03:06.030 --> 00:03:08.857 And after our second screening, our ENT said, 00:03:08.857 --> 00:03:11.790 "You know, since you don't have a family history 00:03:11.790 --> 00:03:12.845 and we know you were sick, 00:03:12.845 --> 00:03:17.845 let's just do this urine screen just in case just to check." 00:03:17.970 --> 00:03:21.210 We ordered our BAHA, but she was born single-sided deaf, 00:03:21.210 --> 00:03:24.824 and did the urine screen just in case. 00:03:24.824 --> 00:03:27.720 And we got the phone call a few days later. 00:03:27.720 --> 00:03:28.957 The ENT's nurse said, 00:03:28.957 --> 00:03:31.710 "Hey, just wanted to let you know the results came back in. 00:03:31.710 --> 00:03:32.980 It's CMV." 00:03:32.980 --> 00:03:36.399 And that was all the counseling we got. 00:03:36.399 --> 00:03:38.970 We didn't get a referral to infectious diseases. 00:03:38.970 --> 00:03:40.410 They didn't tell our pediatrician. 00:03:40.410 --> 00:03:41.983 That was my job. 00:03:41.983 --> 00:03:44.550 And that was the start of our journey 00:03:44.550 --> 00:03:46.893 into single-sided deafness and CMV. 00:03:48.870 --> 00:03:50.490 That's a very lonely experience 00:03:50.490 --> 00:03:52.380 and I'm sure a lot of you can relate to. 00:03:52.380 --> 00:03:54.450 I didn't know anybody with a kid with hearing loss. 00:03:54.450 --> 00:03:57.750 I didn't know anybody who even knew what CMV was. 00:03:57.750 --> 00:04:00.180 And Dr. Google was the only person on my team, 00:04:00.180 --> 00:04:02.700 which I think a lot of you can relate to 00:04:02.700 --> 00:04:06.903 being not the best first experience of what CMV really is. 00:04:07.770 --> 00:04:09.360 So let's talk about grief. 00:04:09.360 --> 00:04:10.740 We have traditional grief, 00:04:10.740 --> 00:04:12.510 which is what we grow up kind of thinking 00:04:12.510 --> 00:04:14.130 and knowing and expecting. 00:04:14.130 --> 00:04:15.420 There's expectancy, right? 00:04:15.420 --> 00:04:17.700 Everyone knows that at some point in their life, 00:04:17.700 --> 00:04:19.110 their grandparent or their parent 00:04:19.110 --> 00:04:20.460 is probably gonna pass away. 00:04:20.460 --> 00:04:23.310 We kind of expect it in a certain start time, 00:04:23.310 --> 00:04:24.870 end time, what that looks like. 00:04:24.870 --> 00:04:26.670 We see our peers go through it 00:04:26.670 --> 00:04:28.890 and we know that it'll happen to us at some point. 00:04:28.890 --> 00:04:30.060 If we adopt a dog, 00:04:30.060 --> 00:04:32.130 we know we're gonna outlive that dog for the most part. 00:04:32.130 --> 00:04:35.400 Things like that, those are traditional grief experiences. 00:04:35.400 --> 00:04:36.719 There's usually a timeline. 00:04:36.719 --> 00:04:40.100 We know, okay, somebody gets sick or whatever, 00:04:40.100 --> 00:04:42.498 and then we have a funeral, 00:04:42.498 --> 00:04:44.160 and these are the things that happen. 00:04:44.160 --> 00:04:46.620 This is the line of events that I can predict, 00:04:46.620 --> 00:04:48.300 I can rely on, 00:04:48.300 --> 00:04:51.199 and I know are gonna help me get through this, right? 00:04:51.199 --> 00:04:52.383 There are rituals. 00:04:52.383 --> 00:04:56.880 We send a meal, we send flowers, we send condolences, 00:04:56.880 --> 00:04:58.950 we give a donation in someone's honor. 00:04:58.950 --> 00:05:01.590 These are the things that our culture says should happen 00:05:01.590 --> 00:05:05.130 when we're supporting someone who's experiencing grief. 00:05:05.130 --> 00:05:07.743 Complex grief, it's your first vocab word here. 00:05:08.917 --> 00:05:10.350 None of that really applies 00:05:10.350 --> 00:05:12.331 when we have complex grief, right? 00:05:12.331 --> 00:05:14.220 We use that word to describe 00:05:14.220 --> 00:05:17.040 when people have a loved one who's gone missing, right? 00:05:17.040 --> 00:05:19.973 They can't really mourn, because what if they show back up? 00:05:19.973 --> 00:05:22.770 They can't really hold a service 00:05:22.770 --> 00:05:24.896 because they don't know what's happened. 00:05:24.896 --> 00:05:28.613 A lot of this leaves people asking, why me? Right? 00:05:28.613 --> 00:05:32.645 My culture didn't tell me that this was gonna happen to me 00:05:32.645 --> 00:05:34.890 or that this is normal. 00:05:34.890 --> 00:05:36.810 Why did I get chosen for this? 00:05:36.810 --> 00:05:39.000 Why our family? Why my kid? 00:05:39.000 --> 00:05:43.050 Right? We're asking those big questions of why. 00:05:43.050 --> 00:05:45.326 It leaves people feeling out of control. 00:05:45.326 --> 00:05:48.270 They were never taught what the 10 steps are 00:05:48.270 --> 00:05:49.680 to get through this, right? 00:05:49.680 --> 00:05:50.970 There aren't 10 steps. 00:05:50.970 --> 00:05:54.570 And they have no guides and nobody to tell them 00:05:54.570 --> 00:05:57.410 that this is normal and how to keep moving, 00:05:57.410 --> 00:06:01.200 and it leaves them feeling isolated from their community. 00:06:01.200 --> 00:06:04.410 Because our culture doesn't teach us what to expect, 00:06:04.410 --> 00:06:06.348 that this is normal, all of a sudden, 00:06:06.348 --> 00:06:10.220 nobody understands what's going on for you, right? 00:06:10.220 --> 00:06:12.370 In the beginning, a lot of my friends would be like, 00:06:12.370 --> 00:06:17.370 "So what's happening with the hearing stuff?" 00:06:17.650 --> 00:06:19.230 'Cause they didn't know how to ask 00:06:19.230 --> 00:06:22.140 and they didn't know what the right question was, 00:06:22.140 --> 00:06:24.183 and it leaves you feeling very alone. 00:06:25.610 --> 00:06:28.500 So everyone has probably heard of the five stages of grief. 00:06:28.500 --> 00:06:30.180 We've since kicked that to the curb. 00:06:30.180 --> 00:06:31.320 We've got about 40. 00:06:31.320 --> 00:06:34.650 And I blew them up 'cause I wasn't sure 00:06:34.650 --> 00:06:36.988 how big the screen was gonna be 00:06:36.988 --> 00:06:37.853 and I hate when the words are too small. 00:06:38.770 --> 00:06:40.650 So this is one model of grief 00:06:40.650 --> 00:06:42.210 that involves a lot of different steps. 00:06:42.210 --> 00:06:43.470 And I'll just read 'em out for you 00:06:43.470 --> 00:06:46.500 just so you have an idea of the language, the steps, 00:06:46.500 --> 00:06:50.100 the experiences of what grief can look like. 00:06:50.100 --> 00:06:54.300 We start with loss and hurt, shock, numbness, 00:06:54.300 --> 00:06:59.300 outbursts and anger, fear, searching, disorganization, 00:07:01.415 --> 00:07:03.390 panic, and guilt. 00:07:03.390 --> 00:07:04.383 Down at the bottom, 00:07:05.436 --> 00:07:07.356 and I think this is really where people can get stuck, 00:07:07.356 --> 00:07:10.623 we have guilt, loneliness, isolation, and depression. 00:07:11.880 --> 00:07:15.360 On the way back up, we might have reentry troubles. 00:07:15.360 --> 00:07:18.150 How do I take this brand new world that I'm in 00:07:18.150 --> 00:07:21.690 and bring it back into that world that I used to live in? 00:07:21.690 --> 00:07:24.749 How do I become myself in a new way? 00:07:24.749 --> 00:07:28.412 New relationships, new strengths, new patterns, 00:07:28.412 --> 00:07:33.412 hope, affirmation, helping others, and adjustment. 00:07:33.960 --> 00:07:35.670 I don't love that adjustment is up there 00:07:35.670 --> 00:07:38.133 'cause I'm not sure we ever really land there. 00:07:39.870 --> 00:07:42.420 And this is a good image why. 00:07:42.420 --> 00:07:44.430 If you look on grief, if you go online, 00:07:44.430 --> 00:07:47.310 people who blog about their grief, they've taken this model 00:07:47.310 --> 00:07:49.740 and they've shown you what it really feels like, right? 00:07:49.740 --> 00:07:52.740 It's a squiggly line that goes everywhere 00:07:52.740 --> 00:07:54.300 and it's constantly moving. 00:07:54.300 --> 00:07:56.970 And just because you've moved past anger 00:07:56.970 --> 00:07:59.160 doesn't mean you're not gonna go back there, right? 00:07:59.160 --> 00:08:02.370 Just because that loss and hurt has moved through 00:08:02.370 --> 00:08:05.015 doesn't mean it's not always available to you. 00:08:05.015 --> 00:08:05.848 And I think all of us 00:08:05.848 --> 00:08:07.690 who are in this complex grief experience 00:08:08.812 --> 00:08:10.652 know you can be walking through your day 00:08:10.652 --> 00:08:11.520 and just see something that reminds you, 00:08:11.520 --> 00:08:14.010 and all of a sudden it's back again. 00:08:14.010 --> 00:08:16.830 And the truth is that grief is incurable. 00:08:16.830 --> 00:08:19.932 Grief is something that we bring with us always. 00:08:19.932 --> 00:08:22.057 And a lot of people look to me and they say, 00:08:22.057 --> 00:08:23.730 "How do I make people feel better?" 00:08:23.730 --> 00:08:26.580 And I say you don't. You just sit with them. 00:08:26.580 --> 00:08:28.590 You just tell them that it's normal 00:08:28.590 --> 00:08:30.390 and that it's okay to feel that way 00:08:30.390 --> 00:08:33.311 and it's okay that your graph probably looks like this. 00:08:33.311 --> 00:08:35.420 I loved all the circles on the one on the right. 00:08:35.420 --> 00:08:38.253 It just really showed the things that felt big for her. 00:08:40.230 --> 00:08:44.147 So a little of our own chaos that first year and a half. 00:08:44.147 --> 00:08:46.530 We were diagnosed with CMV 00:08:46.530 --> 00:08:49.350 and we decided to get a second opinion up at OHSU 00:08:49.350 --> 00:08:51.212 just 'cause we wanted to be 00:08:51.212 --> 00:08:53.130 in front of the top professionals in our state. 00:08:53.130 --> 00:08:57.240 We were kind of in that numb phase of single-sided deafness 00:08:57.240 --> 00:09:00.540 where everyone from early intervention to the optometrist 00:09:00.540 --> 00:09:02.840 told us that single-sided deaf kids did great. 00:09:03.870 --> 00:09:07.495 We were like, okay, maybe this is just a thing. 00:09:07.495 --> 00:09:10.440 And we went up to OHSU and as we sat down in the booth, 00:09:10.440 --> 00:09:12.750 I let her know that we had our CMV diagnosis. 00:09:12.750 --> 00:09:14.917 She kind of did this little pause and, 00:09:14.917 --> 00:09:16.260 "Oh, really? I hadn't heard that." 00:09:16.260 --> 00:09:17.340 I was like, "Yeah." 00:09:17.340 --> 00:09:20.274 To me it was no big thing because click, right? 00:09:20.274 --> 00:09:23.310 And she kind of hustled out of the room 00:09:23.310 --> 00:09:24.210 and made a phone call 00:09:24.210 --> 00:09:26.670 and let us know that they had been briefed that morning 00:09:26.670 --> 00:09:30.120 on the Valier study that they were starting up at OHSU, 00:09:30.120 --> 00:09:33.000 which was a study to see whether kids who missed the window 00:09:33.000 --> 00:09:36.090 for valganciclovir were able to administer it 00:09:36.090 --> 00:09:40.140 by six months of age instead of right away. 00:09:40.140 --> 00:09:41.394 And we were all in. 00:09:41.394 --> 00:09:43.890 We said, this is something to do, right? 00:09:43.890 --> 00:09:45.510 These are steps forward. Oh, my gosh. 00:09:45.510 --> 00:09:49.650 Someone handed me things to do and it felt amazing, 00:09:49.650 --> 00:09:50.631 at least for me. 00:09:50.631 --> 00:09:55.320 And so we enrolled in the study and we did a lot of travel. 00:09:55.320 --> 00:09:58.230 I started back at work at the exact same time. 00:09:58.230 --> 00:10:01.020 And so this is Riley on her first plane ride 00:10:01.020 --> 00:10:04.110 up to do her assessment at the Valier study. 00:10:04.110 --> 00:10:08.073 And that lasted about six months and ended in March of 2020. 00:10:09.270 --> 00:10:11.850 And Riley turned one in April of 2020. 00:10:11.850 --> 00:10:14.490 And that's her first birthday outside with the grandparents 00:10:14.490 --> 00:10:16.434 because it was April of 2020 00:10:16.434 --> 00:10:19.530 and we were going through the pandemic. 00:10:19.530 --> 00:10:21.930 We were surviving with two little kids 00:10:21.930 --> 00:10:24.600 and her hearing loss progressed in June. 00:10:24.600 --> 00:10:27.090 So then we were on the road for a cochlear implant 00:10:27.090 --> 00:10:30.600 on her left side and a hearing aid on her right 00:10:30.600 --> 00:10:32.670 and it was chaotic. 00:10:32.670 --> 00:10:34.950 And if I'm being honest, it's probably the hardest season 00:10:34.950 --> 00:10:36.772 that my husband and I have ever had. 00:10:36.772 --> 00:10:39.510 I was a doer, right? 00:10:39.510 --> 00:10:42.240 I was ready to do things, I was lining things up, 00:10:42.240 --> 00:10:46.170 and he was a withdrawer and he was quiet. 00:10:46.170 --> 00:10:47.400 And both of our kids decided 00:10:47.400 --> 00:10:49.991 that sleep was not on the docket. 00:10:49.991 --> 00:10:54.210 And so I remember keeping track one night in this season 00:10:54.210 --> 00:10:57.180 and there was 45 minutes that both of our kids were asleep 00:10:57.180 --> 00:11:00.270 at the same time and we were exhausted. 00:11:00.270 --> 00:11:01.590 We would get to the end of the day 00:11:01.590 --> 00:11:03.540 and we would just go our separate ways and go to sleep 00:11:03.540 --> 00:11:05.310 'cause we knew the night was gonna be long 00:11:05.310 --> 00:11:07.800 and we couldn't find each other. 00:11:07.800 --> 00:11:09.510 And he would withdraw 00:11:09.510 --> 00:11:12.060 and I would be sending my emails and doing my research 00:11:12.060 --> 00:11:13.950 and just, we just couldn't find each other. 00:11:13.950 --> 00:11:15.960 We didn't spend any time together 00:11:15.960 --> 00:11:18.540 and we didn't really process our grief together. 00:11:18.540 --> 00:11:19.800 And I share that with you 00:11:19.800 --> 00:11:22.020 because I'm a family systems therapist. 00:11:22.020 --> 00:11:23.460 And when you're seeing families 00:11:23.460 --> 00:11:24.630 and you're working with families, 00:11:24.630 --> 00:11:28.560 realizing the many layers of what's going on for them 00:11:28.560 --> 00:11:31.350 as they're coming to their 15-minute appointment 00:11:31.350 --> 00:11:33.870 or as they're traveling without each other 00:11:33.870 --> 00:11:35.190 and having to update each other, 00:11:35.190 --> 00:11:38.160 that there's a lot of things going on behind the scenes 00:11:38.160 --> 00:11:40.803 and we need to do our best to be present for that. 00:11:42.570 --> 00:11:47.460 So what makes something trauma versus healthy processing? 00:11:47.460 --> 00:11:51.120 In EMDR, we talk about big T trauma and little t trauma. 00:11:51.120 --> 00:11:53.074 A big T trauma is an event. 00:11:53.074 --> 00:11:56.070 These are things that have start and stop times. 00:11:56.070 --> 00:11:59.010 We think of trauma often about a big T trauma, 00:11:59.010 --> 00:12:03.840 like a car accident or an assault or a medical event, right? 00:12:03.840 --> 00:12:05.760 Those are things that we remember, 00:12:05.760 --> 00:12:08.092 we remember all of the elements of, 00:12:08.092 --> 00:12:11.314 and we can sometimes reprocess more easily. 00:12:11.314 --> 00:12:14.114 A little t trauma are little things 00:12:14.114 --> 00:12:18.000 that alter the way that we see ourselves or someone else 00:12:18.000 --> 00:12:21.660 and they happen over and over and over and over again. 00:12:21.660 --> 00:12:23.250 I was thinking about this yesterday 00:12:23.250 --> 00:12:26.670 when I teared up in the vestibular presentation. 00:12:26.670 --> 00:12:28.380 I was like, why am I tearing up right now? 00:12:28.380 --> 00:12:31.230 And it's how many times have I asked my providers 00:12:31.230 --> 00:12:34.050 about vestibular issues and been waved off, right? 00:12:34.050 --> 00:12:35.820 That's a little t trauma for me 00:12:35.820 --> 00:12:37.620 and for a lot of CMV parents, 00:12:37.620 --> 00:12:40.150 asking questions and looking for help 00:12:40.150 --> 00:12:42.420 and not finding what we needed 00:12:42.420 --> 00:12:45.060 and being told it was no big deal or it didn't really apply 00:12:45.060 --> 00:12:47.010 when we felt in our hearts that it did. 00:12:47.880 --> 00:12:50.010 So EMDR uses four elements 00:12:50.010 --> 00:12:51.511 of what makes something trauma. 00:12:51.511 --> 00:12:55.394 It might feel unsafe either physically or emotionally. 00:12:55.394 --> 00:12:57.930 It feels out of control, 00:12:57.930 --> 00:13:00.540 which a lot of CMV parents are very familiar with 00:13:00.540 --> 00:13:03.095 and is an element of the grief as well, right? 00:13:03.095 --> 00:13:05.314 Shame or brokenness. 00:13:05.314 --> 00:13:06.840 I know a lot of parents, 00:13:06.840 --> 00:13:09.750 especially moms who birth their kiddos, 00:13:09.750 --> 00:13:11.271 feel like they did something wrong 00:13:11.271 --> 00:13:13.260 or they should have done better 00:13:13.260 --> 00:13:15.540 and that it's their fault that their kid is suffering. 00:13:15.540 --> 00:13:17.430 I hear that from a lot of the CMV moms 00:13:17.430 --> 00:13:21.780 that I connect with in Oregon and it breaks my heart. 00:13:21.780 --> 00:13:23.030 I've got help on the way. 00:13:24.510 --> 00:13:25.500 And responsibility. 00:13:25.500 --> 00:13:27.000 I did something wrong, right? 00:13:27.000 --> 00:13:29.730 Feeling like you should have done something better. 00:13:29.730 --> 00:13:33.150 Signs of traumatic grief involve stuckness. 00:13:33.150 --> 00:13:35.700 Traumatic grief, I want you to think back on that chart 00:13:35.700 --> 00:13:38.820 we saw a few times back and all that moving line. 00:13:38.820 --> 00:13:41.070 If it's traumatic, that line's not moving. 00:13:41.070 --> 00:13:43.170 They're just stuck in that place, right? 00:13:43.170 --> 00:13:45.510 They keep circling and circling and circling and circling 00:13:45.510 --> 00:13:47.250 on that one element. 00:13:47.250 --> 00:13:49.200 There's a lot of weird things that happen in grief. 00:13:49.200 --> 00:13:50.550 There's a lot of unexpecteds. 00:13:50.550 --> 00:13:52.290 But as long as it's moving, 00:13:52.290 --> 00:13:54.510 we consider it to be healthy grief. 00:13:54.510 --> 00:13:57.301 We understand that we're gonna do things to process, 00:13:57.301 --> 00:13:59.220 but stuckness is a really a sign 00:13:59.220 --> 00:14:00.990 that they've experienced a trauma 00:14:00.990 --> 00:14:03.570 and they're really struggling to move through. 00:14:03.570 --> 00:14:05.580 Flashbacks, nightmares, and intrusive thoughts 00:14:05.580 --> 00:14:07.170 are all pretty present. 00:14:07.170 --> 00:14:08.617 You might hear someone say like, 00:14:08.617 --> 00:14:10.200 "Oh, gosh, I just had a nightmare," 00:14:10.200 --> 00:14:12.240 or "I can never forget the face of the doctor 00:14:12.240 --> 00:14:13.073 who told me that." 00:14:13.073 --> 00:14:15.550 Those are signs that that experience was a trauma. 00:14:16.590 --> 00:14:19.380 Intense attempts to control. 00:14:19.380 --> 00:14:22.200 This might look like the patient in your office 00:14:22.200 --> 00:14:27.200 who has four million questions or who is pretty demanding 00:14:27.540 --> 00:14:29.670 about what they're expecting from you. 00:14:29.670 --> 00:14:30.960 It doesn't mean it's a bad thing. 00:14:30.960 --> 00:14:34.380 It's just a sign that like they're using that experience 00:14:34.380 --> 00:14:35.790 to try and move through this grief 00:14:35.790 --> 00:14:38.883 by controlling what they can, and sometimes that's you. 00:14:40.320 --> 00:14:41.700 Deep avoidance and shame. 00:14:41.700 --> 00:14:44.610 These are the parents who don't follow through, 00:14:44.610 --> 00:14:46.680 who are maybe not putting the hearing aids on, 00:14:46.680 --> 00:14:48.450 who are not following up with the specialist 00:14:48.450 --> 00:14:51.750 because it's just too painful and it's just too difficult 00:14:51.750 --> 00:14:54.150 to look at the idea of like, maybe I can't handle this. 00:14:54.150 --> 00:14:56.490 Maybe I'm not a good enough parent for this kid. 00:14:56.490 --> 00:14:58.602 Why did they pick me? Right? 00:14:58.602 --> 00:15:01.860 Defensiveness, anger, and blame. 00:15:01.860 --> 00:15:04.140 This is where we want something to do. 00:15:04.140 --> 00:15:07.840 We need somebody to blame, so we're gonna pick you. Right? 00:15:07.840 --> 00:15:10.320 And it can be pretty jarring, 00:15:10.320 --> 00:15:12.420 especially if you're a provider. 00:15:12.420 --> 00:15:15.621 But again, they're just looking for that element of control, 00:15:15.621 --> 00:15:18.060 that element of why did this happen to me 00:15:18.060 --> 00:15:19.533 and who can I blame for it? 00:15:21.300 --> 00:15:23.160 So how might a CMV family present? 00:15:23.160 --> 00:15:25.050 Of course, there's always gonna be some families 00:15:25.050 --> 00:15:27.420 who do this beautifully and are healthy. 00:15:27.420 --> 00:15:30.842 Those usually aren't the families who land in my office. 00:15:30.842 --> 00:15:33.510 They might be overwhelmed by guilt or blame, 00:15:33.510 --> 00:15:35.190 especially in the beginning 00:15:35.190 --> 00:15:37.710 and feel like they don't know how to move forward from that 00:15:37.710 --> 00:15:39.900 and they don't know what to do. 00:15:39.900 --> 00:15:43.470 They might be struggling to tolerate the ambiguity. 00:15:43.470 --> 00:15:47.430 That is a big and ongoing issue for CMV families. 00:15:47.430 --> 00:15:51.120 And I think it's really helpful to name that for each other 00:15:51.120 --> 00:15:56.120 and for our patients that the ambiguity doesn't end, right? 00:15:56.400 --> 00:15:59.160 You might get your diagnosis in the first two years of life 00:15:59.160 --> 00:16:00.330 and then you have a toddler 00:16:00.330 --> 00:16:02.130 and you're watching these behaviors. 00:16:02.130 --> 00:16:04.410 Is that CMV? Is that just them being a toddler? 00:16:04.410 --> 00:16:06.870 What's going on? And it's constant, right? 00:16:06.870 --> 00:16:10.020 Every time there's an issue, you're asking that question. 00:16:10.020 --> 00:16:12.240 And then you're facing, who do I ask about this? 00:16:12.240 --> 00:16:14.640 Who would know and how can I get help? 00:16:14.640 --> 00:16:15.570 And it's hard. 00:16:15.570 --> 00:16:18.000 It's an ongoing battle to face that ambiguity. 00:16:18.000 --> 00:16:20.373 And sometimes it's really intolerable. 00:16:21.420 --> 00:16:23.610 They may be hyperfixated on outcomes 00:16:23.610 --> 00:16:28.037 or worst-case scenarios and experiencing anticipatory grief, 00:16:28.037 --> 00:16:30.117 particularly if you have a diagnosis 00:16:30.117 --> 00:16:33.450 that you know someday is gonna be a really hard day. 00:16:33.450 --> 00:16:36.030 It's hard to move your brain on from that. 00:16:36.030 --> 00:16:37.950 Your brain's gonna hyperfixate on that 00:16:37.950 --> 00:16:41.100 and it's really hard, especially in the beginning, 00:16:41.100 --> 00:16:43.020 to go on living life. 00:16:43.020 --> 00:16:44.580 How am I supposed to go back to my job? 00:16:44.580 --> 00:16:47.340 How am I supposed to take a break when I know that someday 00:16:47.340 --> 00:16:49.757 is gonna be the day that that happens, right? 00:16:49.757 --> 00:16:53.130 Feeling dissociated or barely functioning. 00:16:53.130 --> 00:16:54.894 This was probably us in the beginning. 00:16:54.894 --> 00:16:57.097 These are the family that just kind of nods and says, 00:16:57.097 --> 00:16:59.370 "Uh huh, uh huh, great. Yep, mm-hmm, yep." 00:16:59.370 --> 00:17:00.960 And they're really not taking it in 00:17:00.960 --> 00:17:03.895 and you can tell they're really just not even in the room. 00:17:03.895 --> 00:17:07.050 They're surviving and they probably have a newborn 00:17:07.050 --> 00:17:09.060 and they're sleep-deprived. 00:17:09.060 --> 00:17:12.037 And so recognizing that these are all signs 00:17:12.037 --> 00:17:15.210 that people are just processing their grief, 00:17:15.210 --> 00:17:16.980 this is how people are in the world 00:17:16.980 --> 00:17:18.602 when they're processing something 00:17:18.602 --> 00:17:19.435 that they weren't prepared for. 00:17:19.435 --> 00:17:21.330 That's really difficult. 00:17:21.330 --> 00:17:22.740 When we can't process our feelings, 00:17:22.740 --> 00:17:26.100 our fight, flight, or freeze response kicks in. 00:17:26.100 --> 00:17:27.300 I was the fighter. 00:17:27.300 --> 00:17:29.340 I was the one calling and Googling 00:17:29.340 --> 00:17:30.600 and making all the appointments. 00:17:30.600 --> 00:17:32.130 My husband was the freezer. 00:17:32.130 --> 00:17:34.200 He's like, maybe it'll just be fine. 00:17:34.200 --> 00:17:35.757 Let's wait and find out. Right? 00:17:35.757 --> 00:17:37.860 And that's why we couldn't find each other, 00:17:37.860 --> 00:17:40.704 'cause we were just processing in two totally different ways 00:17:40.704 --> 00:17:45.704 and it was really hard to find each other again in that. 00:17:45.900 --> 00:17:46.733 We did. 00:17:48.120 --> 00:17:50.250 So what happens for the helpers? 00:17:50.250 --> 00:17:51.540 I'm in this unique position 00:17:51.540 --> 00:17:53.940 of having already been a trauma therapist 00:17:53.940 --> 00:17:57.036 and then living through my own trauma, right? 00:17:57.036 --> 00:18:01.380 I got to live it and understand really what was going on 00:18:01.380 --> 00:18:04.758 from the perspective of both the patient and the provider. 00:18:04.758 --> 00:18:06.780 So it's really uncomfortable. 00:18:06.780 --> 00:18:09.517 It's pretty common that a medical provider is like, 00:18:09.517 --> 00:18:11.040 "Ooh, feelings," 00:18:11.040 --> 00:18:12.960 like, "Hmm, you should go talk to that person over there 00:18:12.960 --> 00:18:14.510 'cause I don't really do that." 00:18:15.424 --> 00:18:16.410 I have like pills and interventions, 00:18:16.410 --> 00:18:18.573 but feelings are not great. 00:18:19.860 --> 00:18:21.120 People complain often 00:18:21.120 --> 00:18:22.890 about their medical provider's bedside manner. 00:18:22.890 --> 00:18:24.930 And some of the reasons for that 00:18:24.930 --> 00:18:27.630 is that we don't want to feel like the cause. 00:18:27.630 --> 00:18:28.920 If you have to tell someone 00:18:28.920 --> 00:18:31.002 that their kid has a CMV diagnosis, 00:18:31.002 --> 00:18:32.741 you've maybe heard that line of, 00:18:32.741 --> 00:18:35.070 "I'll never forget when the doctor told me." 00:18:35.070 --> 00:18:37.290 You don't wanna be that person. Ooh, right? 00:18:37.290 --> 00:18:39.990 I'm gonna make my nurse make that call. 00:18:39.990 --> 00:18:44.760 And you feel responsible for knowing that that family 00:18:44.760 --> 00:18:47.163 is about to go through a really difficult time. 00:18:48.120 --> 00:18:49.860 We hate that there are no good answers. 00:18:49.860 --> 00:18:52.800 We're helpers. We're supposed to have the answers, right? 00:18:52.800 --> 00:18:55.417 We're supposed to have the data and having to tell a family, 00:18:55.417 --> 00:18:57.479 "Well, the research isn't very clear" 00:18:57.479 --> 00:18:59.765 or "We wish we had more data." 00:18:59.765 --> 00:19:02.662 All families are like, "Yeah, I've heard that line." 00:19:02.662 --> 00:19:06.510 But as a helper, you really wish you didn't have to say that 00:19:06.510 --> 00:19:08.687 and you wish you had better answers for that family. 00:19:08.687 --> 00:19:11.010 And it doesn't feel good when you've spent your whole career 00:19:11.010 --> 00:19:12.750 trying to learn how to help people 00:19:12.750 --> 00:19:15.285 and then you run out of answers, right? 00:19:15.285 --> 00:19:17.790 And we don't know how to make it go away. 00:19:17.790 --> 00:19:19.980 Our job is to make the discomfort go away 00:19:19.980 --> 00:19:21.060 or to make things better. 00:19:21.060 --> 00:19:23.850 And we know that these emotions are not gonna disappear. 00:19:23.850 --> 00:19:26.940 And we can't just kind of hand them a pamphlet or a pill 00:19:26.940 --> 00:19:28.965 and be like, "Feel better." 00:19:28.965 --> 00:19:29.940 And that feels gross. 00:19:29.940 --> 00:19:31.950 I think human to human, that feels bad, 00:19:31.950 --> 00:19:34.380 knowing that you're gonna give someone some treatment, 00:19:34.380 --> 00:19:35.820 but then they're gonna walk out of their room 00:19:35.820 --> 00:19:39.845 feeling devastated and you can't really help with that. 00:19:39.845 --> 00:19:42.030 Or we're scared of their reactions. 00:19:42.030 --> 00:19:45.510 They might be experiencing anger or guilt in the room. 00:19:45.510 --> 00:19:48.450 They might be upset and they might let you know. 00:19:48.450 --> 00:19:50.130 They might be talking about your colleague 00:19:50.130 --> 00:19:51.870 and how your colleague didn't inform them 00:19:51.870 --> 00:19:54.864 or they might be looking for answers. 00:19:54.864 --> 00:19:57.690 And you're playing this real dual role 00:19:57.690 --> 00:19:59.550 of wanting to provide the best treatment, 00:19:59.550 --> 00:20:01.260 but also be really present emotionally 00:20:01.260 --> 00:20:02.220 with where your client's at. 00:20:02.220 --> 00:20:05.160 And sometimes they do get really angry or guilty 00:20:05.160 --> 00:20:07.710 and it's hard to sit with them. 00:20:07.710 --> 00:20:11.430 So my mantra is to get comfortable being uncomfortable. 00:20:11.430 --> 00:20:13.440 The more that you can just sit with it, 00:20:13.440 --> 00:20:14.940 the more that you can understand 00:20:14.940 --> 00:20:17.640 that they're in this process and they're moving through it 00:20:17.640 --> 00:20:20.917 and it's okay, the less energy we bring to like, 00:20:20.917 --> 00:20:22.530 "Okay, great, see you later." 00:20:22.530 --> 00:20:25.020 And that really helps families to feel like 00:20:25.020 --> 00:20:27.120 they're seen and heard and accepted 00:20:27.120 --> 00:20:29.550 and that providers are on their team. 00:20:29.550 --> 00:20:31.680 So I want you to remember back to those four elements 00:20:31.680 --> 00:20:34.170 of trauma that we talked about from EMDR 00:20:34.170 --> 00:20:37.830 because when we feel like the cause, we feel responsible. 00:20:37.830 --> 00:20:39.960 When we hate that there are no good answers, 00:20:39.960 --> 00:20:42.303 we don't have a lot of power and control. 00:20:43.470 --> 00:20:45.270 When we don't know how to make it go away, 00:20:45.270 --> 00:20:47.765 we feel that shame and lack of competency, 00:20:47.765 --> 00:20:50.070 and when we're scared of their reaction, 00:20:50.070 --> 00:20:53.070 we might not feel physically or emotionally safe, right? 00:20:53.070 --> 00:20:55.590 So our system is escalating 00:20:55.590 --> 00:20:57.720 because these elements are all present 00:20:57.720 --> 00:21:00.499 as we're working through this with our families, right? 00:21:00.499 --> 00:21:02.940 So welcome to the soft science. 00:21:02.940 --> 00:21:05.193 You get to do a little experiential learning. 00:21:06.510 --> 00:21:09.810 In EMDR, we have an intervention called Calm Place 00:21:09.810 --> 00:21:11.130 and it's where we take our clients 00:21:11.130 --> 00:21:12.450 when we know they're gonna be working through 00:21:12.450 --> 00:21:14.700 some traumatic experiences. 00:21:14.700 --> 00:21:18.405 But I also have a provider calm place 00:21:18.405 --> 00:21:21.690 where usually your calm place, you don't invite people in. 00:21:21.690 --> 00:21:24.630 It's just for you and working through your emotions. 00:21:24.630 --> 00:21:25.590 As a provider, 00:21:25.590 --> 00:21:29.322 I create a calm place where I get to invite my clients in. 00:21:29.322 --> 00:21:33.573 So you can borrow mine or you can imagine your own. 00:21:34.470 --> 00:21:36.930 And if you feel comfortable, you can close your eyes, 00:21:36.930 --> 00:21:40.290 you can take a few deep breaths or just unfocus your eyes. 00:21:40.290 --> 00:21:41.370 I'm just gonna lead you through 00:21:41.370 --> 00:21:43.050 a brief one-minute meditation 00:21:43.050 --> 00:21:45.390 where we practice soothing our nervous system 00:21:45.390 --> 00:21:47.223 so that we can best meet a client. 00:21:48.510 --> 00:21:50.101 So get comfortable, 00:21:50.101 --> 00:21:54.420 focus on the image or create your own sense of calm. 00:21:54.420 --> 00:21:56.910 If you're really into EMDR, you can do a butterfly hug. 00:21:56.910 --> 00:21:58.360 I won't explain what that is. 00:22:00.450 --> 00:22:02.043 And take a couple of breaths. 00:22:09.960 --> 00:22:14.643 And when I go to this place, I remind myself, I am safe. 00:22:19.710 --> 00:22:22.110 I have room for this. 00:22:22.110 --> 00:22:25.503 I can take on whatever this family needs to bring for me. 00:22:26.850 --> 00:22:28.533 Look at all this space. 00:22:32.430 --> 00:22:34.653 I touch into my sensory system. 00:22:35.850 --> 00:22:37.983 What does it smell like in this place? 00:22:41.100 --> 00:22:43.473 Is the air warm or cold? 00:22:46.140 --> 00:22:48.550 Can I feel the sun on my skin 00:22:50.250 --> 00:22:52.113 and the ground beneath my feet? 00:22:57.000 --> 00:22:59.080 I can handle whatever comes in 00:23:02.670 --> 00:23:05.520 and the place where I'm most competent 00:23:05.520 --> 00:23:08.463 is just holding this space for this family. 00:23:09.720 --> 00:23:11.913 They can come and feel safe here with me. 00:23:16.170 --> 00:23:17.883 Couple more deep breaths. 00:23:21.330 --> 00:23:22.980 Hopefully you notice that your system 00:23:22.980 --> 00:23:24.393 feels a little bit calmer. 00:23:25.290 --> 00:23:27.510 You're reminding yourself of those truths. 00:23:27.510 --> 00:23:31.380 You're reminding your system, it's okay. 00:23:31.380 --> 00:23:33.840 I'm not gonna get through this in 10 minutes, 00:23:33.840 --> 00:23:36.090 but I'm gonna be here for this family 00:23:36.090 --> 00:23:38.290 and that's a good thing that I can do today. 00:23:39.270 --> 00:23:42.090 We call these positive cognitions in the real world. 00:23:42.090 --> 00:23:43.353 It's called a mantra. 00:23:44.565 --> 00:23:46.980 You probably heard me say a few. 00:23:46.980 --> 00:23:49.320 I have space for this, right? 00:23:49.320 --> 00:23:50.760 Personally, when people, 00:23:50.760 --> 00:23:54.060 we say emotions take up a lot of space in the room. 00:23:54.060 --> 00:23:55.170 It feels very full 00:23:55.170 --> 00:23:56.430 and all of a sudden we're trying to figure out 00:23:56.430 --> 00:23:59.100 how to get rid of it because they're big, 00:23:59.100 --> 00:24:00.450 which is why I pick a calm place 00:24:00.450 --> 00:24:02.280 that has a nice big sky, right? 00:24:02.280 --> 00:24:04.110 And I remind myself, I have space for this. 00:24:04.110 --> 00:24:05.460 I'm not gonna run out of room 00:24:05.460 --> 00:24:07.680 for whatever these feelings are 00:24:07.680 --> 00:24:11.070 and that my greatest power is my presence. 00:24:11.070 --> 00:24:12.960 I will not have all the answers, 00:24:12.960 --> 00:24:16.470 but I can be here and I can be calm and I can be steady. 00:24:16.470 --> 00:24:18.330 And that is the most powerful thing 00:24:18.330 --> 00:24:19.980 that this family needs right now. 00:24:20.970 --> 00:24:24.030 I remind myself it's okay to not have all the answers. 00:24:24.030 --> 00:24:25.523 This took work for me. 00:24:25.523 --> 00:24:28.680 To say "I don't know" with confidence, 00:24:28.680 --> 00:24:31.830 but recognizing that me acknowledging that I don't know 00:24:31.830 --> 00:24:34.417 also aligns with the client and saying, 00:24:34.417 --> 00:24:36.570 "We're on the same team. Let's go find out together." 00:24:36.570 --> 00:24:39.360 And I'm not gonna pretend like I have answers when I don't, 00:24:39.360 --> 00:24:40.773 which can be very unsafe. 00:24:41.970 --> 00:24:43.800 And I have time. 00:24:43.800 --> 00:24:45.300 This is a hard one for providers 00:24:45.300 --> 00:24:47.402 'cause they might have seven minutes 00:24:47.402 --> 00:24:49.440 until their next client, right? 00:24:49.440 --> 00:24:51.570 Remembering that this is a journey 00:24:51.570 --> 00:24:54.450 and that you've just entered into it together 00:24:54.450 --> 00:24:55.500 and then we have time. 00:24:55.500 --> 00:24:57.381 We're gonna talk again. 00:24:57.381 --> 00:24:58.703 We're gonna keep working on this. 00:24:58.703 --> 00:24:59.700 And that you're accessible to them 00:24:59.700 --> 00:25:00.780 and they're accessible to you 00:25:00.780 --> 00:25:02.780 in this journey that you're on together. 00:25:04.560 --> 00:25:06.120 Things that we say to families, 00:25:06.120 --> 00:25:08.220 we tap into those same networks 00:25:08.220 --> 00:25:10.830 and we speak directly to their needs. 00:25:10.830 --> 00:25:14.460 It's normal to feel this way and I get it. 00:25:14.460 --> 00:25:17.820 I have this intervention called the Invisible Family 00:25:17.820 --> 00:25:19.717 where often families who are struggling. I'll say, 00:25:19.717 --> 00:25:22.320 "You know, I had a family who went through something 00:25:22.320 --> 00:25:24.330 very similar to you." 00:25:24.330 --> 00:25:26.670 And I'll share something they did that was really helpful 00:25:26.670 --> 00:25:28.470 or kind of how long it took them to feel like 00:25:28.470 --> 00:25:31.260 they were on the other side or things that they felt 00:25:31.260 --> 00:25:33.210 that were the same as this family. 00:25:33.210 --> 00:25:34.920 Sometimes that's a fictitious family. 00:25:34.920 --> 00:25:36.480 Sometimes it's my own family. 00:25:36.480 --> 00:25:39.690 But it's always such relief on their face 00:25:39.690 --> 00:25:42.030 when I can say to them, there's someone else in this world 00:25:42.030 --> 00:25:43.584 who's gone through something very similar 00:25:43.584 --> 00:25:46.410 and they got through it and they figured it out, 00:25:46.410 --> 00:25:48.722 and you can too. 00:25:48.722 --> 00:25:51.240 I'm here for you and we are on a team. 00:25:51.240 --> 00:25:52.500 Remember that isolation 00:25:52.500 --> 00:25:54.990 is at the bottom of that chart, right? 00:25:54.990 --> 00:25:56.850 And we want to fight it immediately 00:25:56.850 --> 00:25:59.130 and recognize that we're on a team together. 00:25:59.130 --> 00:26:00.870 Even if you're just the audiologist 00:26:00.870 --> 00:26:04.101 and you know they have 900 other specialists in line, 00:26:04.101 --> 00:26:06.810 knowing that you have a provider on your team 00:26:06.810 --> 00:26:09.813 who's there to listen means the world to a family. 00:26:10.800 --> 00:26:12.600 There are a lot of unanswered questions 00:26:12.600 --> 00:26:15.030 and we're gonna tackle them one at a time. 00:26:15.030 --> 00:26:16.950 This is really about pacing, right? 00:26:16.950 --> 00:26:19.380 You might get that parent who has 800 questions 00:26:19.380 --> 00:26:21.330 and acknowledging like, I get it. 00:26:21.330 --> 00:26:22.980 We are absolutely gonna go there 00:26:22.980 --> 00:26:25.980 and I cannot answer them all in the next seven minutes. 00:26:25.980 --> 00:26:27.840 Nor would it be healthy to try, right? 00:26:27.840 --> 00:26:29.220 Let's pick our top priorities. 00:26:29.220 --> 00:26:31.680 Let's keep working on this together. 00:26:31.680 --> 00:26:33.090 This will take time. 00:26:33.090 --> 00:26:35.130 Again, helping families understand 00:26:35.130 --> 00:26:38.820 that we wish these negative emotions could just go away. 00:26:38.820 --> 00:26:39.900 That's the ideal, 00:26:39.900 --> 00:26:42.150 and that that's not the journey that we're on. 00:26:42.150 --> 00:26:43.290 It's gonna take some time, 00:26:43.290 --> 00:26:45.240 but that you're right there and you're calm 00:26:45.240 --> 00:26:48.487 and you're not worried about how much time it's gonna take. 00:26:48.487 --> 00:26:50.790 "I honestly believe you have done the best you could 00:26:50.790 --> 00:26:51.990 until this point 00:26:51.990 --> 00:26:55.781 and will continue to do so as we move forward." 00:26:55.781 --> 00:26:58.110 This is what I tell the moms who call me 00:26:58.110 --> 00:27:00.150 and tell me that it's all their fault. 00:27:00.150 --> 00:27:01.800 When I was in my second year of grad school, 00:27:01.800 --> 00:27:04.530 I learned a theory called collaborative problem-solving. 00:27:04.530 --> 00:27:07.050 And one of the basic assumptions on that 00:27:07.050 --> 00:27:09.744 is that all kids are doing the best they can. 00:27:09.744 --> 00:27:11.700 And then I thought to myself, 00:27:11.700 --> 00:27:14.522 why are we holding that back to just kids, right? 00:27:14.522 --> 00:27:17.525 Everybody's using the resources, their education, 00:27:17.525 --> 00:27:19.761 their environment, their family system, 00:27:19.761 --> 00:27:21.480 and they're looking at it and saying, 00:27:21.480 --> 00:27:24.522 okay, this is the best I got, right? 00:27:24.522 --> 00:27:29.130 I truly believe that every person is doing the best they can 00:27:29.130 --> 00:27:30.464 from their perspective. 00:27:30.464 --> 00:27:32.361 And if you can believe that, 00:27:32.361 --> 00:27:35.904 then you can recognize that in pregnancy, in parenthood, 00:27:35.904 --> 00:27:37.800 you've done the best you could. 00:27:37.800 --> 00:27:39.450 It doesn't mean you had every resource. 00:27:39.450 --> 00:27:41.490 It doesn't mean you had every amount of education. 00:27:41.490 --> 00:27:43.461 It doesn't mean that you had every support, 00:27:43.461 --> 00:27:45.390 but you've done the best you could 00:27:45.390 --> 00:27:46.800 and I believe that about you. 00:27:46.800 --> 00:27:48.330 And I believe you're gonna keep going 00:27:48.330 --> 00:27:49.920 and you're gonna keep doing the best that you can 00:27:49.920 --> 00:27:52.370 now that we have more resources and more support. 00:27:54.750 --> 00:27:56.370 My formatting got messed up, but that's okay. 00:27:56.370 --> 00:28:01.140 So here's three practical tools for moving through grief, 00:28:01.140 --> 00:28:03.690 totems, touchpoints, and traditions. 00:28:03.690 --> 00:28:07.020 Traditions is the middle, touchpoints is the bottom. 00:28:07.020 --> 00:28:08.400 This is a picture of my own totem. 00:28:08.400 --> 00:28:10.821 It's a time turner from Harry Potter. 00:28:10.821 --> 00:28:13.620 It's usually a three-dimensional object 00:28:13.620 --> 00:28:15.300 that somebody carries with them. 00:28:15.300 --> 00:28:17.970 So it could be a bag they always take with them 00:28:17.970 --> 00:28:19.290 when they have to go to the hospital. 00:28:19.290 --> 00:28:21.930 It could be a rock they keep in their pocket or a key chain. 00:28:21.930 --> 00:28:24.165 Something that reminds them of their beliefs 00:28:24.165 --> 00:28:27.750 and their consistency and their commitment. 00:28:27.750 --> 00:28:29.850 So the time turner tells me, you know, 00:28:29.850 --> 00:28:30.930 this is a moment in time. 00:28:30.930 --> 00:28:32.280 I'm gonna get through this. 00:28:32.280 --> 00:28:34.890 It tells me to believe in a little bit of magic. 00:28:34.890 --> 00:28:36.821 And it reminds me of Hermione, 00:28:36.821 --> 00:28:39.000 who is a strong female character, 00:28:39.000 --> 00:28:41.340 and I remember that I have that within me as well. 00:28:41.340 --> 00:28:42.600 So I just keep it in my pocket 00:28:42.600 --> 00:28:44.070 and if I'm in a moment of distress, 00:28:44.070 --> 00:28:45.600 I'll whip it out and fidget with it 00:28:45.600 --> 00:28:47.700 and it brings me back to those beliefs 00:28:47.700 --> 00:28:49.503 that are hard to grasp sometimes. 00:28:50.460 --> 00:28:52.080 Traditions are also really helpful. 00:28:52.080 --> 00:28:54.210 You'll notice people who are going through 00:28:54.210 --> 00:28:57.240 especially ambiguous grief or anticipatory grief 00:28:57.240 --> 00:28:59.310 will have some traditions in place. 00:28:59.310 --> 00:29:00.810 Maybe they've left the doctor 00:29:00.810 --> 00:29:01.920 and every time they leave the doctor, 00:29:01.920 --> 00:29:04.410 they get the same cup of coffee at the same place 00:29:04.410 --> 00:29:07.802 or they visit the same viewpoint, 00:29:07.802 --> 00:29:11.310 or for us it was driving over the mountain. 00:29:11.310 --> 00:29:13.590 When we drive to OHSU, it's a four-hour drive 00:29:13.590 --> 00:29:15.540 and I have a few traditions along the way. 00:29:15.540 --> 00:29:17.460 I stop at the same Subway every time 00:29:17.460 --> 00:29:19.350 and Riley gets Cheetos for lunch 00:29:19.350 --> 00:29:21.150 because that's what she wants and that's fine 00:29:21.150 --> 00:29:24.000 and it just feels special in that moment 00:29:24.000 --> 00:29:26.370 and that way we like hold onto those traditions 00:29:26.370 --> 00:29:27.765 of this is how we process. 00:29:27.765 --> 00:29:30.780 It's also how people who are practiced in grief 00:29:30.780 --> 00:29:33.810 have found ways to open and close the door. 00:29:33.810 --> 00:29:36.021 In the beginning, grief is just a flood 00:29:36.021 --> 00:29:39.002 and you can't stop it and it feels super overwhelming. 00:29:39.002 --> 00:29:41.880 As you go on and you live with this experience 00:29:41.880 --> 00:29:43.710 of something that's not gonna go away, 00:29:43.710 --> 00:29:47.104 you find ways to open and close the door. 00:29:47.104 --> 00:29:49.801 Touchpoints is another way that people do that. 00:29:49.801 --> 00:29:52.080 Touchpoints are usually people 00:29:52.080 --> 00:29:54.150 or a way of touching into your community. 00:29:54.150 --> 00:29:56.340 So a provider might be a touchpoint. 00:29:56.340 --> 00:29:59.958 You might be an SLP and your client's updating you 00:29:59.958 --> 00:30:02.137 on their OT that they just got and you're like, 00:30:02.137 --> 00:30:03.420 "Oh, my gosh, that's great." 00:30:03.420 --> 00:30:05.550 That's a sign that you're a touchpoint, right? 00:30:05.550 --> 00:30:07.162 They're telling you things 00:30:07.162 --> 00:30:09.240 that might not necessarily be related to your field, 00:30:09.240 --> 00:30:10.170 but they found you 00:30:10.170 --> 00:30:12.000 and they want to update you on what's going on 00:30:12.000 --> 00:30:14.700 because you are an important part of their system. 00:30:14.700 --> 00:30:16.080 This might be going to church. 00:30:16.080 --> 00:30:17.850 This might be talking to family members. 00:30:17.850 --> 00:30:19.322 This might be talking with friends. 00:30:19.322 --> 00:30:22.020 For me, I've built a community on Instagram. 00:30:22.020 --> 00:30:24.180 When my daughter was diagnosed with vision loss 00:30:24.180 --> 00:30:26.700 earlier this year, I almost posted it on Instagram 00:30:26.700 --> 00:30:28.263 before I told the grandparents. 00:30:29.340 --> 00:30:30.723 Whew, that was a close one. 00:30:31.660 --> 00:30:35.340 But it was because those are the people who got it, right? 00:30:35.340 --> 00:30:37.980 I was in this resurgence of grief of like, 00:30:37.980 --> 00:30:40.590 oh, my gosh, here's CMV coming for me again. 00:30:40.590 --> 00:30:42.810 And I needed to go to the people who got it 00:30:42.810 --> 00:30:45.690 and that was for me on my social media. 00:30:45.690 --> 00:30:48.180 So having those touchpoints in places of where we connect in 00:30:48.180 --> 00:30:49.680 and we find people who get it 00:30:49.680 --> 00:30:51.930 and find people who can know who we are 00:30:51.930 --> 00:30:53.403 and remind us of that. 00:30:54.273 --> 00:30:55.558 And we create meaning. 00:30:55.558 --> 00:31:00.278 I as a doer made a podcast where I interviewed people 00:31:00.278 --> 00:31:03.900 about their experiences getting a difficult diagnosis, 00:31:03.900 --> 00:31:05.637 didn't have to be CMV or hearing loss, 00:31:05.637 --> 00:31:09.390 and I also shared little snippets of my own story. 00:31:09.390 --> 00:31:10.620 That still exists in the world. 00:31:10.620 --> 00:31:11.453 If you have people, 00:31:11.453 --> 00:31:14.400 it's a great place to refer people of just the experiences. 00:31:14.400 --> 00:31:15.870 And I tried to really slice it down 00:31:15.870 --> 00:31:17.250 into little 10-minute elements 00:31:17.250 --> 00:31:19.920 of what was it like to first get that diagnosis? 00:31:19.920 --> 00:31:21.540 What was it like to go see this provider 00:31:21.540 --> 00:31:23.670 and be disappointed by something, an outcome? 00:31:23.670 --> 00:31:26.610 And having those teeny tiny moments of exposure 00:31:26.610 --> 00:31:28.260 because it can be very overwhelming 00:31:28.260 --> 00:31:30.600 if you tell it all at once. 00:31:30.600 --> 00:31:32.430 Like I said, I also went to Instagram. 00:31:32.430 --> 00:31:34.680 This is a snapshot of a reel that I posted 00:31:34.680 --> 00:31:37.140 just telling our story about CMV. 00:31:37.140 --> 00:31:38.760 Something happened in the algorithm 00:31:38.760 --> 00:31:40.380 and I got two million views. 00:31:40.380 --> 00:31:43.142 So I did my part for awareness 00:31:43.142 --> 00:31:47.019 and that was actually pretty overwhelming, 00:31:47.019 --> 00:31:51.143 but it was also how I found a really beautiful community 00:31:51.143 --> 00:31:54.193 and a lot of people were able to find and follow 00:31:54.193 --> 00:31:56.070 and relate to the things that I was sharing about. 00:31:56.070 --> 00:31:58.290 I booked a few speaking engagements 00:31:58.290 --> 00:32:00.420 and I became a Hands and Voices Parent Guide. 00:32:00.420 --> 00:32:02.940 Those were ways that I said, I'm gonna take my skills, 00:32:02.940 --> 00:32:04.500 I'm gonna take who I am as a person, 00:32:04.500 --> 00:32:07.350 and I'm gonna build it into this experience that I have. 00:32:07.350 --> 00:32:09.600 That's that other side of the dip, right? 00:32:09.600 --> 00:32:10.890 We've integrated now 00:32:10.890 --> 00:32:15.750 into bringing who I am into this experience. 00:32:15.750 --> 00:32:18.339 Other parents might practice political advocacy. 00:32:18.339 --> 00:32:22.140 They might come to some events or volunteer organizations 00:32:22.140 --> 00:32:23.490 or even a career pivot. 00:32:23.490 --> 00:32:25.140 I think there's a lot of parents here right now 00:32:25.140 --> 00:32:26.982 who are experiencing that. 00:32:26.982 --> 00:32:29.441 They publish books, they lead fundraisers. 00:32:29.441 --> 00:32:32.278 I think the important thing to think about 00:32:32.278 --> 00:32:34.081 when we're supporting parents 00:32:34.081 --> 00:32:36.300 is that some of these are more visible than others, 00:32:36.300 --> 00:32:38.580 but they're all deeply important. 00:32:38.580 --> 00:32:41.250 If you're an amazing artist and you create art 00:32:41.250 --> 00:32:42.960 that helps raise awareness of CMV 00:32:42.960 --> 00:32:45.180 or even just helps process your grief, 00:32:45.180 --> 00:32:47.220 that's really valuable, right? 00:32:47.220 --> 00:32:49.410 If you're just knitting hats for babies in the NICU 00:32:49.410 --> 00:32:52.140 because that was your experience and you want to support, 00:32:52.140 --> 00:32:53.970 all of those things are how we create meaning 00:32:53.970 --> 00:32:57.820 and how we bring ourselves into this process. 00:32:57.820 --> 00:33:02.430 What is the it factor when it comes to resilience? 00:33:02.430 --> 00:33:03.900 Community. 00:33:03.900 --> 00:33:05.190 That's what brings us back. 00:33:05.190 --> 00:33:07.200 That what's to remind us we're not alone 00:33:07.200 --> 00:33:11.250 and we're on the same team, reminding that our providers 00:33:11.250 --> 00:33:12.660 can be a part of this community. 00:33:12.660 --> 00:33:14.460 And also if you are a provider, 00:33:14.460 --> 00:33:17.400 having places to point people 00:33:17.400 --> 00:33:19.530 who are coming to find you, right? 00:33:19.530 --> 00:33:20.940 Knowing about Hands and Voices, 00:33:20.940 --> 00:33:23.430 knowing about the online groups, 00:33:23.430 --> 00:33:25.837 maybe knowing a local family with a parent who said, 00:33:25.837 --> 00:33:27.120 "Yeah, hand out my number. 00:33:27.120 --> 00:33:28.950 I'll call 'em. I'll contact 'em." 00:33:28.950 --> 00:33:31.050 This is how we get through, that our community 00:33:31.050 --> 00:33:34.233 is the most important mechanism of healing. 00:33:35.850 --> 00:33:37.803 Where am I at on time? Oh, perfect. 00:33:38.730 --> 00:33:42.098 When all is said and done, there is no cure for grief, 00:33:42.098 --> 00:33:44.130 but there is prevention. 00:33:44.130 --> 00:33:46.323 We're here at the Public Health and Policy, 00:33:47.681 --> 00:33:50.456 oh, there goes the word, okay, Convention. 00:33:50.456 --> 00:33:54.780 And we cannot cure grief. We'll never go it away. 00:33:54.780 --> 00:33:57.270 There'll never be a pill to make it disappear. 00:33:57.270 --> 00:33:59.340 But prevention, and that is why we're all here 00:33:59.340 --> 00:34:01.950 because we want to hand on to the next family 00:34:01.950 --> 00:34:02.783 that prevention, 00:34:02.783 --> 00:34:05.070 that they don't have to experience what we've experienced 00:34:05.070 --> 00:34:07.923 because we've been able to practice prevention. 00:34:09.210 --> 00:34:11.395 Me. Thank you. 00:34:11.395 --> 00:34:14.395 (audience applauds) 00:34:16.822 --> 00:34:17.878 Sure. 00:34:17.878 --> 00:34:18.881 Yeah. Yeah. 00:34:18.881 --> 00:34:21.533 We have time for a couple questions if that's a thing. 00:34:33.897 --> 00:34:35.347 They're getting a microphone. 00:34:39.720 --> 00:34:42.203 - [Moderator] Okay. Be thinking of your questions. 00:34:44.010 --> 00:34:45.480 - [Attendee] I was curious to know 00:34:45.480 --> 00:34:48.030 the rate of substance abuse 00:34:48.030 --> 00:34:53.030 among the population of the special needs parents 00:34:53.430 --> 00:34:55.920 and families and things of that nature 00:34:55.920 --> 00:34:58.143 if you have any information on that. 00:34:59.880 --> 00:35:01.980 - There probably aren't good statistics on that 00:35:01.980 --> 00:35:03.423 for a couple of reasons. 00:35:04.260 --> 00:35:06.090 It probably doesn't come out for quite a while, 00:35:06.090 --> 00:35:09.120 to be honest, if people are coping under the radar 00:35:09.120 --> 00:35:11.370 that we have other problems over here 00:35:11.370 --> 00:35:12.360 that we're dealing with 00:35:12.360 --> 00:35:16.561 and they're not facing up to the fact that it's problematic. 00:35:16.561 --> 00:35:19.020 So I would say it's probably pretty common 00:35:19.020 --> 00:35:22.050 and that some people will have a season 00:35:22.050 --> 00:35:23.730 and then move through it and that some people, 00:35:23.730 --> 00:35:26.100 it does last as a significant problem 00:35:26.100 --> 00:35:27.510 and a couple years down the road, 00:35:27.510 --> 00:35:29.820 we're realizing that that needs help too. 00:35:29.820 --> 00:35:30.960 But it usually takes a while 00:35:30.960 --> 00:35:34.290 probably because we're really hoping it's just a season 00:35:34.290 --> 00:35:37.833 and kind of keep an eyes on it would be my assessment. 00:35:44.790 --> 00:35:46.182 - [Attendee] Okay. 00:35:46.182 --> 00:35:47.580 I am gonna walk out on a limb here 00:35:47.580 --> 00:35:49.277 and be vulnerable for a second. 00:35:49.277 --> 00:35:51.327 I think the biggest thing for me as a mom 00:35:52.290 --> 00:35:57.290 is that I battled for a long time with my body failed me. 00:35:57.658 --> 00:36:00.720 I gave this to my child. 00:36:00.720 --> 00:36:04.140 And I operated in a sense of what can I change? 00:36:04.140 --> 00:36:04.973 What can I do? 00:36:04.973 --> 00:36:06.300 Can I do more? Can I do less? 00:36:06.300 --> 00:36:07.710 What am I doing? 00:36:07.710 --> 00:36:11.160 And I still operate there sometimes 00:36:11.160 --> 00:36:15.521 and it's a battle of I didn't fail my child, 00:36:15.521 --> 00:36:18.423 but that thought still lingers in there. 00:36:20.364 --> 00:36:21.758 - Yeah. Yeah, absolutely. 00:36:21.758 --> 00:36:22.591 Thank you for sharing. 00:36:23.670 --> 00:36:25.443 There's no perfect answer to that. 00:36:26.801 --> 00:36:30.170 And like pointing you back to your community, right, 00:36:30.170 --> 00:36:31.710 of like we all have our bodies 00:36:31.710 --> 00:36:33.921 and we all had that experience 00:36:33.921 --> 00:36:37.320 and you're still a perfect and valuable human being 00:36:37.320 --> 00:36:41.700 and we all believe that about you and it's okay. 00:36:41.700 --> 00:36:43.350 It's okay that that happened. 00:36:43.350 --> 00:36:44.183 Yeah. 00:36:51.630 --> 00:36:54.102 - [Attendee] Thanks, Stephanie. Great presentation. 00:36:54.102 --> 00:36:55.200 So important for everybody. 00:36:55.200 --> 00:36:59.970 My question is, we would love if all providers had training 00:36:59.970 --> 00:37:02.100 on trauma-informed care, but as we all know, 00:37:02.100 --> 00:37:03.780 that doesn't happen. 00:37:03.780 --> 00:37:05.521 Do you have advice for parents? 00:37:05.521 --> 00:37:09.570 I think sometimes we can be a little hard on providers 00:37:09.570 --> 00:37:11.910 because we have some mistrust. 00:37:11.910 --> 00:37:16.641 And even like in the school system, one time someone, 00:37:16.641 --> 00:37:18.924 I can't believe it, I made someone cry 00:37:18.924 --> 00:37:23.760 because I was just adamant that my child needed something 00:37:23.760 --> 00:37:26.520 and I think it's a little bit of an overcorrection 00:37:26.520 --> 00:37:30.750 because I have this trauma of my providers have failed me 00:37:30.750 --> 00:37:34.290 in the past and I cannot let that happen again. 00:37:34.290 --> 00:37:37.680 So I'm wondering if you have advice for parents on like, 00:37:37.680 --> 00:37:40.470 is there a little cheat sheet we can hand out to providers 00:37:40.470 --> 00:37:43.324 with, hey, this is why I am the way I am 00:37:43.324 --> 00:37:45.521 and give me a little grace 00:37:45.521 --> 00:37:48.483 because I've been through this trauma? 00:37:50.490 --> 00:37:51.990 - Maybe I'll have to make one. 00:37:52.890 --> 00:37:55.020 I think that providing context, 00:37:55.020 --> 00:37:56.670 I also, when I think about the context 00:37:56.670 --> 00:38:00.870 of an education system, I also think that they're seeing 00:38:00.870 --> 00:38:03.180 18 different versions of that parent 00:38:03.180 --> 00:38:05.340 who has had a different experience 00:38:05.340 --> 00:38:06.747 and different medical complications 00:38:06.747 --> 00:38:08.490 and probably coming in with that energy. 00:38:08.490 --> 00:38:10.290 And so I always kind of project 00:38:10.290 --> 00:38:12.284 that they're just a little tired of that energy 00:38:12.284 --> 00:38:14.130 when they're interacting with me. 00:38:14.130 --> 00:38:16.680 But I do try and provide a context of like, 00:38:16.680 --> 00:38:20.430 hey, sometimes I'm pretty adamant. 00:38:20.430 --> 00:38:23.100 CMV is a really dicey diagnosis. 00:38:23.100 --> 00:38:24.720 We don't always have clear answers. 00:38:24.720 --> 00:38:27.420 And so we've had to advocate a lot for her 00:38:27.420 --> 00:38:30.060 and we've had to really go through the rounds 00:38:30.060 --> 00:38:30.893 with providers. 00:38:30.893 --> 00:38:34.530 So yeah, practice patience with me. 00:38:34.530 --> 00:38:36.000 I'm gonna let you know how I'm feeling. 00:38:36.000 --> 00:38:38.204 Sometimes that'll be really honest, 00:38:38.204 --> 00:38:40.230 but I know that we're on the same team 00:38:40.230 --> 00:38:43.290 and reminding them overtly that we are on the same team 00:38:43.290 --> 00:38:45.164 and that you understand that 00:38:45.164 --> 00:38:48.093 is really helpful to kind of help them soothe. 00:38:51.900 --> 00:38:55.170 - [Moderator] First, I feel horribly bad for just coming in, 00:38:55.170 --> 00:39:00.001 but I'm part of the National CMV Foundation 00:39:00.001 --> 00:39:02.790 Community Alliance in Wisconsin. 00:39:02.790 --> 00:39:04.200 And I know at one of the meetings, 00:39:04.200 --> 00:39:06.540 I had mentioned to Amanda in the group, 00:39:06.540 --> 00:39:10.140 would there be interest in starting, 00:39:10.140 --> 00:39:14.401 I guess would be better online support group for families, 00:39:14.401 --> 00:39:19.401 mothers, dads to do a monthly support group online on Zoom? 00:39:21.782 --> 00:39:24.720 I'm just seeing if there'd be interest or not 00:39:24.720 --> 00:39:28.470 'cause I'd be more than happy to create it, start it, 00:39:28.470 --> 00:39:33.090 and just to have a safe place to everybody who understands 00:39:33.090 --> 00:39:35.370 'cause their child had CMV. 00:39:35.370 --> 00:39:38.730 So I don't know how you guys want to vote or tell us, 00:39:38.730 --> 00:39:40.140 but just-- 00:39:40.140 --> 00:39:41.003 - Whoop whoops from the back. 00:39:43.260 --> 00:39:44.610 - Raise the hands. - Yeah. 00:39:48.000 --> 00:39:49.713 - [Moderator] Any other questions? 00:39:51.274 --> 00:39:52.920 - [Attendee] Yeah, I have a question here in the back. 00:39:52.920 --> 00:39:54.470 - [Moderator] Okay. Wait, wait. 00:40:06.750 --> 00:40:08.940 - [Attendee] Yeah, just with therapy in general, 00:40:08.940 --> 00:40:11.640 it's tough to chase therapists 00:40:11.640 --> 00:40:14.190 to understand what we're going through. 00:40:14.190 --> 00:40:16.320 And so is there a network? 00:40:16.320 --> 00:40:18.240 You're in Oregon. We're in Utah. 00:40:18.240 --> 00:40:19.590 - Yeah. - We'd love to talk to you, 00:40:19.590 --> 00:40:21.636 but you're a long way away. 00:40:21.636 --> 00:40:22.655 - Right. 00:40:22.655 --> 00:40:24.132 - [Attendee] Do you guys have a network 00:40:24.132 --> 00:40:26.220 that we're able to link up with someone more locally 00:40:26.220 --> 00:40:30.930 that understands what we're going through? 00:40:30.930 --> 00:40:33.420 - Yeah, so with therapy, licensure is tricky, right? 00:40:33.420 --> 00:40:36.452 I can only see people who are in Oregon, which really blows 00:40:36.452 --> 00:40:39.270 and we're hoping that with national healthcare, 00:40:39.270 --> 00:40:40.103 we can change that 00:40:40.103 --> 00:40:43.620 'cause I would love to just be the CMV therapist mom. 00:40:43.620 --> 00:40:47.610 There is a woman on Instagram, Amanda Griffith-Atkins. 00:40:47.610 --> 00:40:50.194 If you don't follow her, you absolutely should. 00:40:50.194 --> 00:40:52.710 I'll say it again since I don't have it typed up here, 00:40:52.710 --> 00:40:55.500 Amanda Griffith-Atkins. 00:40:55.500 --> 00:40:58.756 She's based out of Chicago, but she has a list. 00:40:58.756 --> 00:41:02.700 Her son has, I am gonna say it wrong. 00:41:02.700 --> 00:41:07.500 It's not Treacher Collins, but her son has a disability, 00:41:07.500 --> 00:41:08.520 a lifelong disability 00:41:08.520 --> 00:41:11.280 and she really focuses on family therapy and grief. 00:41:11.280 --> 00:41:14.310 She posts a lot about grief and disability 00:41:14.310 --> 00:41:17.550 and she actually has a list going of all the therapists 00:41:17.550 --> 00:41:20.910 who are able to kind of provide for families 00:41:20.910 --> 00:41:23.610 who are having that experience across the nation. 00:41:23.610 --> 00:41:25.860 So you can email her and she'll let you know 00:41:25.860 --> 00:41:28.193 if there's anybody in your state who can do that. 00:41:29.340 --> 00:41:32.415 - [Attendee] Since I'm holding the mic, I have a question. 00:41:32.415 --> 00:41:33.630 - Yeah. 00:41:33.630 --> 00:41:35.550 - [Attendee] Everything that you showed us on the graph, 00:41:35.550 --> 00:41:39.150 I have experienced in families I have dealt with 00:41:39.150 --> 00:41:40.473 as well as some of my own, 00:41:41.400 --> 00:41:45.754 but I'm encountering at times and I have through the years 00:41:45.754 --> 00:41:50.190 when you add to that cauldron culture, 00:41:50.190 --> 00:41:52.911 low socioeconomic status, 00:41:52.911 --> 00:41:57.123 worries about putting food on the table next week, 00:41:58.650 --> 00:41:59.850 how do you handle that? 00:41:59.850 --> 00:42:04.850 Because they have looked to me as the one with the answers 00:42:04.882 --> 00:42:09.720 and beyond being there as a shoulder or listener, 00:42:09.720 --> 00:42:11.085 I don't have answers. 00:42:11.085 --> 00:42:14.463 I'm a fixer and I get frustrated because I can't fix it. 00:42:15.362 --> 00:42:16.195 - Yep, absolutely. 00:42:16.195 --> 00:42:17.467 That was on our slide. 00:42:18.365 --> 00:42:22.080 Recognizing those struggles is really important. 00:42:22.080 --> 00:42:25.590 And I'll turn you right back to we are on the same team 00:42:25.590 --> 00:42:27.037 and sometimes that looks like saying, 00:42:27.037 --> 00:42:29.790 "Let's find somebody who can help with that for you." 00:42:29.790 --> 00:42:31.057 And just following up and saying, 00:42:31.057 --> 00:42:34.530 "Hey, were you able to find a therapist or a social worker 00:42:34.530 --> 00:42:35.850 who can help you with those things? 00:42:35.850 --> 00:42:39.120 I'm just paying attention. I know that's a concern for you." 00:42:39.120 --> 00:42:42.102 And saying we're on the same team, right? 00:42:42.102 --> 00:42:46.380 And that it's a lot of questions and it's a lot of needs 00:42:46.380 --> 00:42:47.700 and we're gonna go one at a time 00:42:47.700 --> 00:42:50.400 and even if those needs start with the roof over your head, 00:42:50.400 --> 00:42:53.340 that we understand that in the hierarchy of needs, 00:42:53.340 --> 00:42:55.380 that's what comes first. 00:42:55.380 --> 00:42:57.750 I experience that a lot as a Hands and Voices Parent Guide. 00:42:57.750 --> 00:43:00.457 When we get a medically complex kiddo, I call 'em up like, 00:43:00.457 --> 00:43:01.770 "Oh, how are the hearing aids going?" 00:43:01.770 --> 00:43:03.270 They're like, "I'm just keeping my kid alive." 00:43:03.270 --> 00:43:05.850 Like, "I'll call you in a year," right? 00:43:05.850 --> 00:43:07.767 'Cause it's just not on the top priority of needs. 00:43:07.767 --> 00:43:10.680 And just recognizing that and being in alliance with them 00:43:10.680 --> 00:43:12.630 and saying, yep, we're gonna keep plugging away, 00:43:12.630 --> 00:43:13.620 we're gonna keep going, 00:43:13.620 --> 00:43:16.890 and your invisible family who found this therapist 00:43:16.890 --> 00:43:18.682 and it was really helpful, right? 00:43:18.682 --> 00:43:20.184 Now you know a therapist 00:43:20.184 --> 00:43:22.680 who you can say you heard talk one time 00:43:22.680 --> 00:43:25.920 about how accessing those resources is so important 00:43:25.920 --> 00:43:28.350 and so helpful and using that invisible family 00:43:28.350 --> 00:43:32.010 to kind of say, I know this is a top priority for you 00:43:32.010 --> 00:43:33.390 and let's focus in on it 00:43:33.390 --> 00:43:37.053 so we can get to the stuff that's medically important too. 00:43:38.790 --> 00:43:40.230 - [Linda] And this is Linda Hazard. 00:43:40.230 --> 00:43:42.184 I just have one comment. 00:43:42.184 --> 00:43:45.224 A number of states over the last few years 00:43:45.224 --> 00:43:49.920 have entered into an interstate compact for SLP services, 00:43:49.920 --> 00:43:53.160 audiology services, PT, and OT. 00:43:53.160 --> 00:43:55.743 And I have worked with a couple of families 00:43:55.743 --> 00:43:59.010 that I would love to have you be able to work with 00:43:59.010 --> 00:44:03.690 or other trauma-informed holding space therapists as well. 00:44:03.690 --> 00:44:05.970 And is that something that's ever been considered 00:44:05.970 --> 00:44:08.221 in your profession? 00:44:08.221 --> 00:44:10.230 - Not that I'm aware of. 00:44:10.230 --> 00:44:15.000 There are states that have trading of licensure, 00:44:15.000 --> 00:44:16.350 so I could apply in Washington 00:44:16.350 --> 00:44:18.402 and all I would have to do is pay a fee 00:44:18.402 --> 00:44:19.710 and I would have licensure up there as well. 00:44:19.710 --> 00:44:21.600 It's just really on the individual therapist 00:44:21.600 --> 00:44:22.890 to then go pursue that 00:44:22.890 --> 00:44:24.600 and then every state has a different relationship 00:44:24.600 --> 00:44:26.580 with the other state and so you have to kind of investigate 00:44:26.580 --> 00:44:29.490 who's got those nice relationships with each other. 00:44:29.490 --> 00:44:31.804 I think a lot of us are holding out for national licensure 00:44:31.804 --> 00:44:33.922 and really feel like that's probably 00:44:33.922 --> 00:44:36.762 10, 15 years down the road, 00:44:36.762 --> 00:44:40.562 but would be such a benefit for everyone to be, 00:44:40.562 --> 00:44:43.680 especially with telehealth being more present, 00:44:43.680 --> 00:44:45.960 of being able to serve a family in Florida 00:44:45.960 --> 00:44:48.285 who's going through the same experience, 00:44:48.285 --> 00:44:49.887 but to be able to talk to another CMV mom 00:44:49.887 --> 00:44:51.546 would mean everything to them. 00:44:51.546 --> 00:44:53.123 For sure. 00:44:53.123 --> 00:44:55.146 - [Attendee] Another question. 00:44:55.146 --> 00:45:00.146 I'm an EDI coordinator, but as you were telling your story, 00:45:03.630 --> 00:45:05.650 I identified with your husband 00:45:08.430 --> 00:45:13.430 and I would've gone through the same thing 00:45:13.470 --> 00:45:15.900 that your husband was doing. 00:45:15.900 --> 00:45:18.720 And so it made me kind of think about that 00:45:18.720 --> 00:45:21.000 as you're talking about trauma 00:45:21.000 --> 00:45:25.284 and I've been to a number of these CMV conferences, 00:45:25.284 --> 00:45:30.284 it's nice to see parents, predominantly moms, 00:45:31.808 --> 00:45:35.808 working with our Hands and Voices chapter in our state. 00:45:35.808 --> 00:45:38.290 The guides are moms 00:45:41.520 --> 00:45:45.450 and so I'm looking at it from the guide perspective 00:45:45.450 --> 00:45:50.450 and especially as I connected with your husband, 00:45:52.730 --> 00:45:55.450 it's like I'm gonna stand back 00:45:57.150 --> 00:46:02.150 and try to protect my feelings and not be forthright. 00:46:02.610 --> 00:46:07.023 And so any advice for husbands? 00:46:08.970 --> 00:46:09.803 - Yeah. 00:46:11.306 --> 00:46:13.203 Yes, absolutely. 00:46:14.250 --> 00:46:15.960 My husband actually developed an anxiety disorder 00:46:15.960 --> 00:46:16.800 as a part of this. 00:46:16.800 --> 00:46:19.290 I missed that part in my presentation. 00:46:19.290 --> 00:46:21.570 He just got so protective of the kids 00:46:21.570 --> 00:46:23.790 and he looked to what he could do 00:46:23.790 --> 00:46:26.100 and that was present in the interviews on my podcast too. 00:46:26.100 --> 00:46:29.040 I tried to incorporate a few different dads and husbands 00:46:29.040 --> 00:46:31.500 of they want to be the hero 00:46:31.500 --> 00:46:33.300 and they want to be the rescuer and they can't. 00:46:33.300 --> 00:46:35.523 And that really causes that freeze of like, 00:46:36.444 --> 00:46:37.447 oh, what do I do? 00:46:37.447 --> 00:46:39.589 I'm just gonna stand here and hope it goes away 00:46:39.589 --> 00:46:41.109 and not be a problem, right? 00:46:41.109 --> 00:46:43.500 Because of all the other problems that are going on. 00:46:43.500 --> 00:46:45.690 So really finding some concrete ways 00:46:45.690 --> 00:46:49.350 that men can be involved that don't involve a lot of talking 00:46:49.350 --> 00:46:51.637 or thinking about things that, 00:46:51.637 --> 00:46:53.460 you know, just showing up to event. 00:46:53.460 --> 00:46:55.690 My husband really likes supporting 00:46:55.690 --> 00:46:56.928 our Hands and Voices events. 00:46:56.928 --> 00:46:57.761 He'll show up and he'll watch the kids 00:46:57.761 --> 00:46:59.550 while I'm gabbing with all the other parents, right? 00:46:59.550 --> 00:47:02.490 And he feels like that's really meaningful for him. 00:47:02.490 --> 00:47:05.730 Finding those concrete things that parents can do. 00:47:05.730 --> 00:47:08.310 I'm always really intentional about inviting other parents 00:47:08.310 --> 00:47:10.830 or communicating what happened in a session 00:47:10.830 --> 00:47:15.830 or in a meeting with one of our providers with my husband 00:47:15.930 --> 00:47:18.210 and making sure he has all the same information too. 00:47:18.210 --> 00:47:20.100 And we can kind of draw attention to that sometimes 00:47:20.100 --> 00:47:22.200 when we're providing and it's just the mom in the room 00:47:22.200 --> 00:47:23.033 of like, 00:47:23.033 --> 00:47:24.750 how would you like to get this information to your husband? 00:47:24.750 --> 00:47:25.920 Do you want me to send an email? 00:47:25.920 --> 00:47:27.150 Do you want you to pass it along? 00:47:27.150 --> 00:47:29.040 Do you want to record what we talk about? 00:47:29.040 --> 00:47:31.525 And just highlighting that, like this is important too. 00:47:31.525 --> 00:47:33.420 He deserves the information too. 00:47:33.420 --> 00:47:35.370 I know he is over there kind of doing his thing, 00:47:35.370 --> 00:47:38.430 being steady, but keep that invitation coming 00:47:38.430 --> 00:47:41.580 and recognizing that they're just as important and valuable 00:47:41.580 --> 00:47:43.593 in this constellation. 00:47:44.670 --> 00:47:46.870 - [Moderator] Okay, one last quick question. 00:47:49.440 --> 00:47:50.700 - [Attendee] Yeah, so in your reel, 00:47:50.700 --> 00:47:53.280 you had said that you were infected at 39 weeks. 00:47:53.280 --> 00:47:55.170 So I guess my question is twofold. 00:47:55.170 --> 00:47:57.570 One, how common is that that late? 00:47:57.570 --> 00:48:00.000 And second, did you get testing at that time 00:48:00.000 --> 00:48:01.470 or is this like an assumption? 00:48:01.470 --> 00:48:02.490 Like this is when I was sick. 00:48:02.490 --> 00:48:04.704 This is probably when I contracted CMV. 00:48:04.704 --> 00:48:05.790 - It is an assumption 'cause that's when I was sick 00:48:05.790 --> 00:48:07.950 and my husband got sick and both my parents got sick. 00:48:07.950 --> 00:48:12.950 So we got the zombie strain and yes, we did not get testing. 00:48:13.350 --> 00:48:14.550 I never was tested. 00:48:14.550 --> 00:48:15.690 It was never even mentioned to me 00:48:15.690 --> 00:48:19.470 until after Riley had fully failed all her hearing tests. 00:48:19.470 --> 00:48:20.820 I don't know how common that is. 00:48:20.820 --> 00:48:23.664 That's probably better question for the OBs in the room 00:48:23.664 --> 00:48:26.400 or the infectious disease experts, 00:48:26.400 --> 00:48:28.230 but I've talked to quite a few people 00:48:28.230 --> 00:48:30.261 who have had that later pregnancy infection 00:48:30.261 --> 00:48:33.183 and a lot of people who don't even remember being sick. 00:48:34.350 --> 00:48:35.183 Yeah. 00:48:36.090 --> 00:48:36.923 Thank you. 00:48:38.137 --> 00:48:40.487 (audience applauds)