Thinking Positive:

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 ½-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 ½-years-old and I have been told the ½ 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 ½-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