What I am going to do first is introduce the members of our panel and then each of them will speak a view minutes on the topic of staying positive from a different angle. And then we are going to have a bit of a discussion after we each take our turn to deal with questions and worries from each of you about this topic. Obviously, this is a hard thing for many of us to do, specifically, given our situation. Our first member of the panel is Dave and Sherrie who has Leo, 11 ˝-years-old with SMA type 2. Leo was diagnosed in 1992. He was about 2-years-old. Sherrie has 2 other children who are not affected. Dennis and Tammy also come because of their affected child. Kevin and Karen have a daughter, Shannon who is 15 ˝-years-old and I have been told the ˝ is important. So she is 15 1/2. And for myself, my wife's name is Anne, and we live in Philadelphia, Pennsylvania. We have two children. Jack who is now 7-years-old, diagnosed was type 1 SMA in 1995. We also have a daughter named Kara who is now 2 ˝-years-old that we adopted from Korea 2 years ago. So we are the panel to this meeting.
Dave has chosen to speak first: Before I actually turn this over to my colleagues on the panel here, I would like to introduce the topic by reminding myself of a conversation I had earlier today, when somebody asked me, "How has your year gone, Al?" Which this is about the 5th year I have been to the SMA conference and now I have grown accustomed to seeing familiar faces and old friends. So we meet each year now, around the same time and the most common question I have answered is, "How has your year been?" "How is Jack? How is he doing?" And my answer was, "Great! It has been a great year. We have had spinal fusion surgery, in the hospital for about a week, took about a month for recovery, and we ended up in the hospital in February because of a respiratory illness, so it has been a great year!" It has been a great year. And for those people who know us, that who aren't affected directly by SMA, it is another crazy year in the life of the Freedmans. But to us, it has been a great year. We feel very positive about the year. We have been helping our child grow and develop. It has been a hard year, but it has been a great year. In our perspective, we are great, and our sense of structure may be different from other people about their own situation or other people in terms of how they would have dealt with our situation or their own, they will have their own perspective.
Our topic is staying positive in the face of adversity. We would also like to touch on it; you have to almost take the lead from our kids. Because they are always way more positive than we are. The one thing that I look back on, on another good year, was our son is now 11 and the interactions that he has with his peers and friends. It is critical, and I know that we all have children at different abilities and different methods of communicating that we have, it is whoever they are playing with, and we have been fortunate to have playmates that Leo has known since birth almost. Kids can play almost as if there is no visibility even there. They really don't notice that there is anything wrong, until sometimes much later on. As long as they are playing on the computer or something like that or a board game, the interaction that our son has with his friends, he has genuine friends, and they enjoy coming over and playing with him. They are incredibly positive and completely forget about the disabilities that our son has. I think that is pretty much all that I wanted to share. The relationship with peers, if you can develop those when you are disabled and even your other children, and their friends comes over from other ages, older or younger, they all get along and maybe how other kids are affected and interact can be a learning tool.
Maybe we can learn from our kids, we are very fortunate that it has been our experience, he is happy and has a positive attitude. We need to follow the lead of our kids who are happy, and it is easier for people to see us do that, our families and our friends, and when they see us being positive and happy they often they get that from us and following along and be positive is impressive on our kids and our friends. And I know this because I work professionally as a psychologist and I feel that "copers" are our friends who are important to us and frequently contacting our kids. The further away people are and the less contact that you have with friends, the harder it is for them to come out and be positive about their situation. If we are positive then that is the way our kids are going to be.
I learned so much. I just got here so I am not in the flow of the SMA conference yet, but I love this topic every year because we learn from each other and I think that I learned to treat them like every other kid and you know, otherwise they will have two handicaps, socially as well as a physical one. And we have taken that attitude and the other thing is I remember back when it was really hard, someone started talking about well let's do something, let's try and do something positive out of this and you will eliminate another theory so we started a fund raiser and that was really hard to do because we were givers so we think. We are givers; we are not takers so to have to ask some people for help was very anti-intuitive. And now I just think about we just had the 10th year and it is a love fest every year with our daughter we raised over 100,000 dollars in 10 years and it is a way to get together with a bunch of people and make something positive and make a difference in trying to find a cure which is what it is all about because these kids really are amazing, everyone of them. I love each and every one of them. I love meeting every one because there is something about SMA kids that they are just magnets to every body in the group.
Listen to the top characteristics of stress: 1. little or no time to prepare 2. little previous experience 3. little sleep is provided 4. experienced by few others 5. recurring times of crisis 6. lack of control, and sense of helplessness 7. a sense of loss 8. disruption and disaster 9. high ? 10. high emotional impact 11. affected by medical problems
(Lots of laughter at the end of that list) So if someone came in here and interviewed each of us, here, right now, and there they are. So we obviously are all experiencing high levels of stress, so if you ever had trouble before with being positive in the face of adversity.
I did want to mention the importance of us treating our kids like any other kid would be treated.
The best thing that ever happened to us as parents was when Jeff got a power chair.
I am better now, but I remember crying constantly, and my kids came home one day and they said, "Would you just stop crying. You don't have SMA. He has SMA." And all of sudden it was like, "Yeah, well, you are right. I don't have it, he does. I have to be the parent here. I have to be the one that makes things positive." Because he can be positive, he is very happy. He doesn't know there is anything wrong with him and it was like "Wake up!" you know and it was so funny it was like all of sudden it just like a brick wall hit me. It was time for me to realize that he is the one who is progressive with age, not me. I have to just treat him like a child and play with him like a normal child.
Our kids like every kid, needs parents who are positive and hopeful. And as Kent said, our kids have one disability and we don't want them to have another. We too felt so bad because when Jack was a baby he was so fragile and it was hard to say "no." It was hard to say "no" when he was testing limits. He can test limits because he wants different things but by not saying "no" you are creating a different kind of monster. The best thing that ever happened to us as parents was when Jack got a power chair and he was driving places that he wasn't aloud to go. And we were forced to say no; you can't go in the women's locker room. You can't go into the road when it is dangerous to go into the road. That was healthy for us to have to be parents, you know in a positive way that was for us. In my practice, I see a lot of able-bodied kids and parents, otherwise healthy kids and families who are having emotional difficulty because their parents have difficulty for one reason or another setting limits or not setting limits. Parents who haven't been positive with their kids, and their kids develop and aren't feeling positive. Funny how that works and it if we as parents provide that positive role modeling for our kids, they see us deal with stuff positively and have this attitude to negotiate with other people in a positive way, have a hopeful and positive attitude, then they will again imitate what they see. Kids imitate a perfect parent, so in my practice when I see kids are having difficulty in school where they are at home listening to the parent, and if that is the case then that has developed over time because they are doing what they have learned. So we as role models need to be remembering that our kids see and hear and watch every thing that we say or do. Our kids with SMA are affected particularly but they can see and they hear and they can think and they can do things and they can learn, we know that about them. So they are going to do all those things that as they watch how we act and respond as parents. One other thing I want to mention before we open the discussion and give Sherrie a chance to talk, if she would like to, is the importance of taking care of ourselves. In order for us to be a caregiver we have to be able to be healthy ourselves and this is something I have learned being a professional, and being a teacher, not just being a professional, if you are going to be good at helping then you have got to be healthy enough to have the energy physically and emotionally to help and to stay positive we have to take care of ourselves. And with our kids it is very hard for us to have the time as parents to get exercise and to go to a movie, to go out together as a couple. You have to work very hard to come by that kind of time and in many cases in our situations as parents of SMA kids it is hard to do that because our kids are need constant care and we are not if we are not providing for them then someone has to, but for us to refuel our tanks, it is very important for our mental peace to stay healthy enough to stay on top of it and to be a healthy parent. None of it is easy to do but all of it is important to think about. We are not healthy when our tank is empty and we need to refuel to stay healthy and provide that healthy positive influence for our kids.
There are still no comments from Karen. (laughter-it seems she has a bit of stage fright and has been chosen to get teased throughout this meeting. Karen is a member of the panel claiming her husband is there to do all the talking for the both of them.) I am just picking up on what you said about us taking care of ourselves, it is kind of difficult to do actually. We have not gone on vacation since the diagnosis. He goes on a canoe trip once a year, and he takes my little son with him and I don't know if that is really getting away. Husband says, "It is not like with you." Because we really don't have somebody to watch our son and I think a lot of it is us too though because I don't think we are quite sure we have somebody who can really take care of him the way we would. Because you know, we like roll him every two hours at night and so we talk about it together and see that there is all this panic stuff. I think he is a little more nervous about it than I am, but you are right it is time for a break, we do go out more, I mean we go out go to a movie or visit friends but it is for only a couple of hours. I figure when he goes to college will be time for our break.
The way I think about this is by thinking of the gas gage in our car; those of us who have kids with SMA are rarely operating with a full tank of gas. In fact, many of us stay somewhere between a quarter of a tank and "e". So in order to stay positive, we have to be careful not to let ourselves hit "e" and stay on "e" because then it is impossible for us to function and stay healthy and be positive for our kids. We have to do the things that we can do to get fuel in our tanks and to move that gage closer to a quarter of a tank or an eighth of a tank. And those things include sleeping, eating, taking a shower once in a while, if my wife were here she would be the one saying, "taking a shower", and going out and spending time together, however hard it is to engineer that to get out and get the gas gage closer to a healthier level. Exercise is something I do, that I make a priority to fuel me to give me a little more gas that helps me stay healthy and positive and allows me to be more efficient where I can, not only take of my family, but I have other people who are looking for help too. We all have different ways to put fuel in our tanks. Pat it is to go tennis or sewing crafts. Some people enjoy going to work, some people have a hobby, some people exercise, but that little bit of something for ourselves puts our gas gage closer to the quarter of a tank. And that can make a very big difference and making that a priority and seeing that you work hard, help toward the goal of thinking positive.
I would like to invite questions now from any of you here or comments to any or all of us and we will happy to respond:
I think it is just important for the kids too, to get away from us. And for them to learn to be more independent without us and you know that other people can take care of you.
What I had heard is that there is a program called Respite that can come help give the parents some relief but I wouldn't know how to get that going or even have the energy to find out. Al says, "You are right, that would be very helpful. Some of you are probably thinking, that is a great idea, but how in the world am I going to have time to go track that down and if you thinking that, then my answer to that is for every hour, think of it this way, for every hour you spend trying to figure this stuff out you are going to get 20 hours back, if you get to the bottom of how the system works. And you are right some states have respite funding, some don't. Some insurance will pay for nursing, some will pay for aid, some won't. In our case we have had non-medical people who are not nurses who take better care of our son than some of the licensed nurses and the RNs and the aids. So for our hour you spend trying to figure this kind of thing out you get you a lot back in return if you can figure it out and if you have other people who can help you. I want to let you all know too, that I used to have lots of little babysitters especially when my son was two, things were just so much easier than now. But I knew that someday they wouldn't be able to help the same way, so I signed up to be put on the waiting list and now I have lost my help and I am still on the waiting list. So if you are thinking that this is what you may want, then go ahead and sign up now because there is a very long waiting list. It can be as long as 4 or 5 years that you have to wait. I am still waiting 3 years later, we haven't heard anything. So don't think I don't need that yet, because if you feel that you may need it then go ahead and sign up so you won't be left waiting when you really do need it. Some else: I stay in Indiana and I have been on the list for a year now and then I was actually pulled from the list, cause we called SWIRCA, and it has got several different Medical Waivers that you can sign up for and each Medical Waiver has several programs and services that are available through that waiver, well Crystal was pulled off of one waiver, cause we signed up for two different waivers. When we got pulled from the one waiting list we found out that then she had to be reevaluated to make sure that circumstances haven't changed and that she was still eligible and then we sent all the information in to Indianapolis to have it processed and everything and she got denied. She was not eligible for this waiver because she didn't need constant care. So we got off the waiting list, but then here it is 6 months later and we are still trying to get them to see that she needs this waiver. We are in the process of appealing the decision, and when she does get that waiver we are still going to be on the waiting list for the final one, the one that is for the developmentally disabled which is the big one that provides the therapies and all that stuff, but that waiver in Indiana is a 5 to 6 year waiting list. So you know sign up.
Al, "Back to my gas gage." When finding these resources and you get fuel in your tanks, when you are going to do the search, if it takes this long, some of the reasons some of you are here I am guessing is because you loose gas in your tanks as you are trying to get people to pay attention to your kid. You have to be careful how much emotional energy you use up quick as you are trying to get from people what you need and that is what we are all doing and so if we are going to get what we need for our kids, we need to think about the gases line for our tanks and maybe 3 years down the line that we don't even know if we need that but we need to measure that against the effort it takes to get people to pay attention because it can become frustrating. I was in a session earlier today with a few people in this room, on school stuff and finding myself getting frustrated just thinking about such the stuff that we are in the middle of now which is testing us and it makes it hard for me who is supposed to be the expert on staying positive. So we have to watch out.
As you pitch in here, it would be helpful to say who you are and where you are from and what brings you here to let everyone know:
We have an extremely happy kid, always has been and enjoys being around and what I would like to learn from your experience is when they get older and realize that they want to do so much and can't because of SMA, does that get hard to deal with? Dave, "It was just a few times for us, I think one time in 11 years Cleo said to me probably when he was in about 3rd grade he actually said to me Dad I wish I could walk. But never other than that and Sherrie has had some times when I think that Cleo got the realization of his condition hit him, and I think he matured." Sherrie speaks, "And I just talked to him, you know, and we both cried." Kevin speaks, "Yeah, we are going through that right now. Shannon is a freshman in high school and…" Karen corrects him, "sophomore," but you are watching the other kids you know what I mean, they are maturing, they are dating, and stuff like that so it is tough. It is tough now, you know, it is the first time we kind of were wondering when is that going to happen and now some of the opportunities are for her sister who is younger than her, one is a freshman right behind her so it is tough but again you got to sit there and focus on the positive and we were fortunate we have a big family so she moves around and does her sleepovers and has a good support system, a lot of cousins and she interacts a lot with people but yeah she has made the comment lately about Saturday night, "Yeah, me, Mom and Dad!" Sherrie says, "You know we talked and the next thing it is fine. I told them what all the positive things we have and we want her know all the things she can accomplish, you just because she is in a wheelchair doesn't mean you can't do anything. And I just came from another seminar where it was planning for your future by state planning and stuff for your children and we always have this back in mind, well, you know that is all interesting and all how you can set up a trust for them so you don't lose and so they can get all the benefits, but what if she can work. They are able minded people, give them a computer and they can work. He has been using the computer since he was 15 months old and it is incredible and it is like I go to these things and part of me is like yeah we have to do this and the other part is like well no we don't have to do this because he is going to be able work. And when he turns 16, he is working and I am sorry but that is the kind of work ethic I grew up with and also that he grew up with, if he can work, if he can work at Wal-Mart greeting people or if he can work at a record store telling people where they have to go to find a certain record or something then why can't he, why can't he go work? But there are things that they can do. If he can work part time after school at an office doing data entry, there is so much that they can do that that part of me is always like well lets see now. It is an important thing to do in life because you should have that all ready for them but then the other part is like well if I do this am I taking away his independence of what he can become. We have gone to that seminar I think for 4 years and never done anything because it is like well you know we should but…we haven't done it yet.
It is just like any normal child when they come up and ask you a question about sex, well what are they actually asking you, is the same thing about their disability. You have to weigh their questions and weigh what they are asking you and seeing the up side about it. But that is when you decide, it is like well, you have to talk to with them. You have to really feel them out to see where they are at, is it something that they just need to talk to somebody about it or what.
I wanted to comment on the fuel in our gas tank that it is not a matter of our gas tank being at a quarter of a tank or an 1/8 of a tank or almost on "e", we have got a leak in our tank. And little things, normal things we find just draining constantly be drained and so even coming here which is very important to both of us I had to go this morning for a little while and make all the arrangements and make sure they were set to go. My fear is that I am not going to die an old man; it is going to be on an expressway somewhere. And then I have this 5-year-old who has all the energy in the world and he expects me to play baseball with him because that is important to him and not just throw a few balls but chasing them and running him down and everything. So the movie Shawshank redemption had a number of good quotes because the one that really stands out with me was when the lawyer said, "Hope is a good thing." And for me that is what we are going to accomplish, you another time Joshua said, "Dad, we are going to save that bike for Maliki because when he gets older he is going to ride that bike." And at times I think they just don't understand because he should know that he can't do these things. But he insisted that we save it. But it gets so crazy that we can't even go to church and worship together, it is rare that we do. So one of us is always home on Saturday or on Sunday. We never do thing together. So when we talk about being positive over this or that, because we are mourning over our loss, it is the joy that we have had together at one time so we rarely share anything anymore.
It takes a while to get back on track. But it will get better. I think a lot of that comes down to the fact somehow in our little brains we start to think that we are the only ones who can take care of our children. And it is not true. But another part is that it is like by the time, well, we need to write down everything your child does, you know what their normal routine of life is because, she used the example of her sister, had cerebral palsy and in laying her down she put her glasses in the same place every night, well, those glasses were not there the next day, it threw off for weeks. But there is so much we have to do with our kids on a daily basis that we just do, but we don't even think about it, we just do it. And I started thinking when she said that because like she said it is a notebook. And then you start to think, how can I ask somebody to sit down and read this notebook so that they know how to take care of my child. And that is the problem, but some of them are old enough to tell them what they need, and some of them are like Leo can tell what he can take and this is what you to do and things like that and I know you have a story about Shannon going to the bathroom for the first time in school after the longest time because she finally felt comfortable asking somebody. But you know these are the things that your right I have friends Kevin and Karen who have offered watch Leo for us. Kevin says, "We are not good enough." (laughter) But that is us, you know you are right, it is not that hard to do and there are people who will help. I have friends constantly saying you know we will do it. It is just that you have to take them up on it. Al says, "It is actually awkward for us and it is awkward for some people to ask for help and it does help when it is offered when we are in this situation, but it is a healthy thing to do for ourselves and other people want to help that don't know how to help, don't know what to do to help us. So then if we give them some directions about how they can help then they feel good and we get help and it takes time to get the point certainly for many of us who like to be independent and who are independent.
Al says: I want to double back to the gas tank leak and I appreciate the comment and I think we need acknowledge our different levels of stress even among that list of 11, and for families and I know a few of you here are doing consultations, for those of you who have kids who are kind of dependent that there are different levels of need for each child and for those of us who are fortunate and that is not for our children to be dependent on us and the gas tank leak is directly related, it sounds like, to your ability to have nursing coverage for ours doesn't even offer that. This is a crisis and I was in a Nursing conference about 6 weeks ago and they think they are the ones who have the crisis all the time and they are not the ones who have the crisis, we are and the nurses can't come and when you have a gas tank leak in your car, you car can't drive very long and very far and the goal is obviously to fix the leak. We can't control the nursing shortage, but Respite care resources, family and friends could be other ways to patch that hole in the absence of nursing care. Easy for me to say, hard for you to do. Easy for all of us to say in theory, hard to do in practice. When the nurses aren't covered we have hours now that aren't covered but even though they aren't covered we also aren't that dependent so we lose help, we lose Respite help more than we lose critical sleep help for ourselves. There is a very different level of this for those of us who are in these different situations. And as much as it is possible to look a way to repair that leak, then the healthier we can be. Health carries you a long way well even when you do have a leak in your tank.
I also want to double back with one of the things that has we have in common, what do we do when our kids ask us, or when our kids express interest in something that they can't do. Just want to briefly comment on that too. Kids are going to go through developmental phases of acceptance just as we as parents go through phases of acceptance and there are a couple of factors involved here, one, where is the child when SMA begins to affect them? To those of us who have children who never sat up, and never walked, who didn't lose the ability to do something they once did is a different starting point. Our son Jack, never walked, never sat up on his own, so his view of the world has always been from his wheelchair, from his kid cart, and now through his power chair. He didn't lose the ability to do something he once did, contrast that to a Christopher Reeves situation, a person who has a typical life, which was interrupted by an accident or a disease, who abruptly loses the ability to do something they have been doing. Their transition developmentally, is different. My son doesn't complain about what he can't do, at least yet, most of the time and I believe part of that is attitude and personality. So that is one element of it. The second are developmental stages kids go through. A seven-year is at a different place physically and emotionally developmentally than a 15 ˝ year old, 14 year old, 12 year old, and a 2 year old. So that as kids get older they a bump into this and there are questions that are going to come up at different points and in different ways because their disability is affecting them at different levels as they get older and to be honest with your child when they ask you a question is the most important thing to do. To be honest entirely and to talk to your child, gives your child the signal it is okay to talk about this. That is the first thing you want to do, that is with any parent, any child. When kids bring up complicated things to parents of able bodies kids, sex, drugs, or other things, however you chose to handle them will affect them at home and at school. If parents are uncomfortable and freeze, then that gives kids a signal, I can't you with that. So the last thing we want to do as parents is to give our kids the signal that they can't talk about this. So above everything else, talk with them, even though it is not easy and talk honestly, talk directly, and as we discussed before, emphasize things that we can do and focus on those things we can do. If your child shows you that something is getting in the way of their emotional development and in our case with our child running off in a power chair, and doing something that was not safe which is what we call to tempt them and saying we are with this point we feel who is going to care about me? That is a signal that the child is saying I need help with this, I am not doing well with this right now. I need help figuring this out for myself right now, it is too hard for me to do by myself. And then you as a parent feel that you need support to do that for your child. And that is a signal, to get a third party, or a professional of some kind to help you help your child or to help your child directly. That would be the case with any parent with any child who says something, that does something, that needs you to be concerned about their well-being or does something unsafe or shows signs of depression or anxiety, something getting in the way of their ability to do what they specifically can do or have been doing and adapt change at that there or behavior for our kids. So that was just a few things I wanted to go into.
What about when he says that he wants to do something and you know he can't do it? Do I accept that he can't do it or what should I tell him? Just because I want my son to have all the stuff he can, that doesn't mean he will be able to. It just goes back to that question of what do you say to a child when it is questionable whether you should be an obstacle for the child? I think we have all become masters of what we can do so we he asks can I climb that tree? Maybe, if you figure out a way, maybe there is a way that if you put him up to the tree. You know there are other things that he can do or other ways to get them to do it. You can't be in infantry but you can be of help, so there are certain things that you can rest on it but too again it is how much of an answer do they want. I personally think that we need to prevent from treating them like they can't. I think it is important to let them keep dreaming their big dreams because that is what Joshua is saying with the bike and I think it is healthy for him to do that because that is the way he was growing and I don't want to get in the way of that. Maliki changed the way I think about things, in that Maliki is 3 and has type 1, but Joshua is not affected, well that is not accurate; Joshua is affected. He is not diagnosed with SMA but he is definitely affected by SMA when he is out in the yard playing by himself and throwing the ball out there and being the announcer and calling the game and all by himself, I only see it as how different it is for him. I just miss the two boys not having each other to play with the way I grew up playing baseball in the yard with my brothers. When Joshua said to me and he sees me as he comes into the house me taking care of Maliki, that no one pays attention to me, that everyone pays attention to Maliki. I am aware of how affected he is about how it is important to get him to be fathered this way so he can have an hour with other little kids of his age, because we have to decide who is going to be with Maliki. It just does affect the whole family. My four year old says: When Leo gets bigger he is going to walk. Yeah, ok. You know, I am not going to take away his dream. It is good that he has a dream and he thinks his big brother is going to walk someday.
What really helped us was finding someone to help, and it just seemed like an impossible thing to do and the way we ended up doing that was by the coordinator that was designated to us through the health department, she was my advocate, and she got on the phone and we started calling around and just trying to find out what agencies were out there. That is how we find out there was help. And we called each agency one at a time, because they knew what service they would provide and their policies better than anybody. We signed up for several programs that didn't work out, because of one thing or another because it ended up being the wrong program or whatever, but we were willing to do what ever we needed to do to get him taken care of. Finally a year and a half later we got him on the right program. And then about a week after we finally got him on the right program he passed away.
I just wanted to say that one of the greatest gifts that my parents gave to me was the potential to dream and I think that your greatest challenge as parents as loved ones and people who have this disability your greatest challenge is going to be protecting your loved ones from pain and protecting their potential and I would like to challenge that because I think that if you don't dream you will never be as high as the opportunity as you have to get. And as a parent you and your loved ones have the opportunity to see that they reach higher, stand higher and push further and if you give them the opportunity they may not be able to climb a tree but they are going to still accomplish what they want to be successful. I just want to encourage you all family members to train them or offer them and they will fulfill their greatest dreams.