ROOM OF YOUR OWN: Special Needs Mini-Conference

Liveblog

BLOGHER
AUGUST 5TH, 2011
LUNCH AND ROOM OF YOUR OWN |
SPECIAL NEEDS MINI-CONFERENCE

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>> Julia Roberts: But he is doing well and he doesn't want to harm himself or any of his teachers or any of us. And so, um, telling that story, I think, is as important as telling the breakdown. So, I am a public blogger. I used their photos.
>> Hello. So, um so I blog as Ariela Acoto. One of the things that Julia failed to mention is a year ago when she started asking me about this, she said, you know, let's get together for lunch. It will just be 10 of us. Okay. Sure. And then I discover that there's a lot of people and she turns out to be probably one of the best organizers I ever met in my life. So, yeah. It was a little disconcerting. For those of you asking why would an anonymous blogger get up and talk, I didn't expect this at first. Well, anyway, um so, I started out many years ago, um I wasn't going to be in the I.et. I wasn't going to do anything. When I first started, um, having problems in my life many, many years ago, I have had ADD my entire life. I was diagnosed 12 years ago. Because I wait a minute diagnosed and girls often aren't, um, I basically turned it into depression, low self esteem and anxiety, um, and a host of other things. I literally say to people I spent my entire life convinced I was stupid and that I wasn't capable of anything. And it's I still remember watching an episode of ER and seeing there's a portrayal in one of the episodes where the woman had discovered that she had or me is talked about having ADD and somebody had said she was always walk around with this little phone that told her schedule and where she was supposed to be in. Anyway, I ended up. I took that and went to my doctor. This is long before it went in the news and this is long before the first portrayal anybody had seen. I got a full assessment and started taking medication. It was literally like putting on glasses. Well, I wanted to tell everybody. Oh, my God. Look at this. I told the doctor, whose an acquaintance of our family. And she said don't be ridiculous. Don't drug addicts do that. And my doctor was like I never heard of this, my GP. I guess I have to follow through. Are you surer? You sure this is it? I kept thinking you're the doctor, lady. Don't you know these things? And that repeat itself. After about four or five times of getting horrible, derogatory remarks, I thought, I guess I have to be totally anonymous about this. I can't tell everybody what afternoon amazing thing it is because they don't think so. Well, we kept going through life and I had, um, my oldest son who is having all sorts of problems. 5, 6, what's going on with him. And we finally realized we had to get him assessed and I kept thinking I bet he has it too. But I realized by then we couldn't talk about it. And I went we'd gone through infertility, pregnancy loss. My son Matthew had was prenatally diagnosed with Trisome 18, which is fatal. And he was stillborn. We actually terminated the pregnancy because based on all of his symptoms, we knew that he was going to suffer terribly if we tried to do, um, a birth with him at full size and they said that at that point he could have died. And we wouldn't have known. It would have just been a big mystery. But there are so many things I was keeping in and keeping in and even though I was taking medication, I was still getting depressed and I needed a doctor who understood something. And then I discovered the internet. Anyway, 2006, I started blogging and I realize the beauty was that 24/7, any time, 3 o'clock in the morning if you're really wondering whether it's really worth staying alive, they're there. I kept thinking how can I tell anybody? How can I talk about this under my own name? And I realize you know what, I probably couldn't. One of the reasons I wait a minute on the internet is because I'm adopted. Like many people with special needs and like many, ah, adoptees these days, um, it's a very different set up than it was many years ago. The current sort of adoption methods and things. So I do. To say I talk about being adoptee and having a horrible experience with that. Anyway, to those of you who are adopt parents, I admire are you all. And for those of you who practice adopting, you are my heroes. When I rave on about it, we all had different experiences in life, but I sort of look at and think how can I want to go there and a this and talk about, you know, my adoptive parents are violent and abusive and if I put my real name and real face on the internet, they'll find me again. They haven't found me and they haven't found the children. You'd be surprised how many people online are fleeing abusive relationships, bad boyfriends, problems in their past. And one of the reasons I'm a strong supporter of being anonymous as a choice is. If you want to be out and have your name out, there I will show up and defend you. I am stand between anybody who hurts anyone. It has to be a choice. And we all have to be able to protect ourselves to whoever degree we want to. So, over the years of blogging, I have thought I can be a little more out of my issues and it's allowed me to practice being braver in public. And speaking out about things. But I have discovered that among my political friends, many, many, many people in political life, celebrities, public life have special needs that neigh have struggled depression, ADD, all sorts of different illnesses and problems and they don't tell anyone. They've disclosed to me thinking because I worked if politickings and volunteer in politics and I'm like oh, no. I'll never out them, but oh, God, would I give a million dollars if they come forward because they're already in office and public, they can make their life so much easier as for everybody else. One of the things we do advocate online quite strenuously is that politicians have to start make policies to make it easier for our kids. You have to have an IAP and we have to put a diagnosis on it. Why? When special Ed first started, they didn't have there were no lables because nobody was sure back then about diagnosis. Do we have to make it so obvious in a classroom who has it versus who doesn't? I keep thing to say look. These kids are growing up and it's easy to sate age stigma is over, but it may not be. The advantage of being private is that I can say the things that I want and I can talk about things about my marriage. My husband and I have this agreement. He didn't read any of my stuff because he says that is like your support group, honey. I wouldn't go in. It's like going to AA some or something else, I won't be listening in. He said, but I want to know if there's a problem. I said okay. So we talk about stuff and I get [INAUDIBLE] a bit and say you know what, here's driving me insane. I want to kill shim. And then he and I can go back and talk about stuff and then I'll say, oh, honey, it's okay. Oh, I love him so much. He's so awesome. And that also, to me, is important because I. People to know you can have problems and difficulties and bury children and have depression and have kids who have all sorts of undiagnosed and or diagnosed issues and guess what? You can survive. Your marriage can survive and it doesn't is it isn't lovey dovey every five seconds and it isn't, you know, um it isn't just oh, we're all great and then our marriage is done. Boom, which is the usual explanation you get online. And you know what? That doesn't tell people how to survive. It is a disadvantage because I would like to be more public and show you. I will happily show any of you any of them. I just don't want them aligned, but my kids look perfectly normal. The young one we're stim working on his stuff, but your children won't end up as zoom bees if you get help. Their lives won't be over. They can live like and have great futures. Um, so it is the disadvantage of it, but again, it's a choice we all each have to make. You're signaling me here. So
>> Is it that obvious?
>> I think this was a small group.
>> Julia: Yeah. One of the things about this is because there are so many of us, which is a fantastic thin, we thought it would be great to break out at your table. We have a few people Atlantad. They can raise their hands whoever is going to try to help facilitate discussions. Ellen is over here. Jen. I call her guavalicious. Her name is Kate. He's in back.
I also want to thank them. Their bios names in the back, their blog names, their Twitter names. I'm hoping we can start some discussions. I know that privacy and blogging and being public are anonymous is becoming a bigger issue especially with cyber bullying, if you went to the one this morning. And special needs and the stigma around special needs and just how kids can be. Um, and so I'm hoping we have some small group discussions. And then we are going to be, um, kind ever coming around and also coming back to the larger group maybe in about 10 or 15 minutes and discuss this as a large group and then we'll move on to our next topic. Okay? Thank you. Talk amongst ourselves. It's an order.
>> I have a profoundly disabled son who won't be able to easy is the internet for quite a while. But some of this stable's children, goat an age where they can type their own name and find their own pictures is one of the biggest concerns is how do we balance the need and at the same time respect their privacy and respect their future privacy. I think Kerry need a really good point she wants her kid to be able to go to college. She doesn't want some college person to be able to lock back at the history of his life. I think that's an interesting topic.
>> I'm wondering if as they get older, our kids are even carrying more online. My thing is they're growing up [INAUDIBLE] is they're in an age where their lives are online. My son had an e mail before he had written a letter with a stamp on it. So I'm wondering if we're taking that in more as a serious issue than they will. That's my question.
>> I didn't necessarily have a question. I'm Ferrell on Twitter. I have a 9 year old daughter with [INAUDIBLE]. I haven't written about her since last year or the year before I should a different blog and I'm about to regrant and so I may be talking about her again. Now that she's 11 and a half, I'll absolutely run everything that I'm going to say forward over to her first. But probably if I, you know, import things first old blog and talk about her diagnosis and things like that, I would I would want her to see what I had written about her and make sure that she was okay with what I had out there and I think if you think about it that way, you know, they are going to go looking and finding. So, if it's possible for you to kind of get together to the spots you have where I went about them and as they get older, make sure that content is okay with them is. They're going to remember that it's there and if they feel a little less okay with it, maybe they'll come and tell and you maybe you can pull it back in the draft or something.
>> I was just wondering if you give them veto power?
>> Oh, absolutely.
>> Yes.
>> How far [INAUDIBLE]. I think it's coming.
>> I was going to say am maxed and I understand that I have is I'm Ellen. But I always do think I was just telling these guys that we had this embarrassing poop situation the other day and I wasn't going to write about it because some day down the road it will really embarrassed him. But I was just telling these guys if he ever grows up and finds out that I have a blog about him and he says screw you, mom, I will be the happiest mom in the world.
>> I want to make clear distinction between anonymity, which is facelessness and pseudonymity as under Aurelia is, as Jen used to be, as Shannon iced to be and many of us still are. And I think having a discrete online identity that is not connected to your family name or your children's family name gives you validity and I think especially in the current setting has some real positive advantages especially if you're talking about sensitive things about your children. My youngest child is 23. When I started blogging, I used her real name. Then I switched. And now, just now she has given me permission by sitting for some videos to talk about her disability to be an inspiration to other children. So that's something to just think about as things change. Anonymity versus pseudonymity, things change in your life's lifetime.
>> Anyone else?
>> My kid is going to be 9 on Monday. In 10 years when she's ready for college, it will be a totally different perception by then too. It's not a complete norm because we kind of think we're normal, but we're only like 28% of the population and the first wonder.
>> And everyone else is strange for not being on it.
>> Yes, yes. So it will be more mainstream in 5, 10 years. So I got my fingers crossed by then so I won't be the crazy mom who posted those pictures online.
>> Jen, last item on this.
>> We had a discussion how, um, putting our real name give his more legitimacy and when we're trying to share our knowledge and our cause and purpose to help encourage others and that was something they chose to do in the last year and it's kind of scary, but I hope it does good things. So that's what we had a good discussion about.
>> Guava?
>> A big topic at our table was being anonymous, I just being anonymous online is fine. I have a different last name than my husband. My kids aren't going to be found in googling. What I worry about is being open in my community and how that affects my children. I think Shannon will probably speak to that obviously, but that's something that I would really love to get input and thoughts. I feel it's important for us to show that we're the special needs community and it's people they know, but not have that on our children if they don't want it on them and not letting people pre J. it gives them Ben 50d doubt, but it is Smith struggle with a lot.
>> I struggled with it as well. I struggled with it until it hit need in the face with school and then I had to make a discussion to go one way or the other at that time and for me, um, just it's a personal thing. I think when you put your name and your face and your familys' story on something, it does give it more credibility fortunately. That's my thought on that.
>> I have a question. If you're already blogging and you're already using, um, your children's names and like I have medical reports on my blog because I think that it was important to show. Um, say I want to switch back or I wanted to switch and become a little more anonymous. You know what I'm talking about. Where would I go with that?
>> How do you do that?
>> Yeah. How do you that?
>> I just had a friend that had a scare situation with a stalker. She's not a special needs blogger, but she basically, um, took her blog down over a period of time. She started removing posts and then she went back to the two sites. I know one is way back machine and I don't know the other one and she has requested those be removed those posts. So they can over time, but it takes a long time for that to populate. It will not be down next Tuesday.
>> [INAUDIBLE]
>> Not you can go to these two and they can pull some of them back. That's what I'm saying. She's had to request it. It's a long process because it populates over time. Um, and, you know, it cachets for a long time, but over time, it can be? Of it can be pulled back and she's pulled back many, many posts. So it's starting, but it's taken months.
>> [INAUDIBLE]
>> You have to go back to the old post and change them. Absolutely every name. I don't know but, but I have 1400 posts. Um, on my blog.
>> One of the things that was recently happening, um, the healthcare community with nurses, um, on Twitter, there's the healthcare social media chat. One of the things that has come up is that they're saying they want the right to be anonymous because they're afraid their doctors will fire them. And some I appreciate when doctors are actually anonymous or trying to be anonymous because I also want to know what do they really think. What is their mindset. I don't necessarily need them to be, you know, straight ahead just like spitting out press releases. That's kind of useless, really. But one of the things is that is interesting is many of the interests, it just didn't occur to them. Well, why would you put your information on the internet? I'm like, well, because you suck at explanation stuff.
[Laughter]
and but in all honestly, with the healthcare social media, people there are lists of doctor blogs and nurse blogs. One of the things they desperately need is people saying back to them, especially if you're not that doctor's patient, but just reaction because so many of them are trying very hard and they're not quite there and I think one of the biggest things with our kids is we get freaked out and needing more support because they got a bad treatment from somebody. They can't change unless they know there's a problem. If that means we're anonymous in some way and we can feel free is to say something, we have a second Twitter account or you can just have a chat and follow them and say stuff, go for it. Message me and I'll tell them stuff because I understand the issues you're scared. What if your doctor sees. What if they say something about it? I completely understand it. I know people that are fired. It's an interesting question. You can cite a case? Do you know somebody? I know them, but I can't name them. Well, if you're somebody who's had that problem, tell me or tell them please. We have to do something to change it. If that means you have second anonymous something, great.
>> All right. Last one and then we will move on to our next topic.
>> My name is Tina and I have three children and two have high functioning autism and they're all getting older. So from 10 to 12 to 17, you talk about pseudonymity. My blog is about me and that's really what it comes down to how I respond to their special needs. So, if I can tell story and have is it come back around to how I responded to it, to me, that's what it's about.
>> Yeah. That's a brilliant point actually. Um, so thank you for say. That I try to do that too, but I inevitable talk about them. Um, yes. That's a brilliant point. If we kind of turn it on how our feeling or our Parrot of the story is. So that's a great point. Um, we're going to move on. So we can make up a little bit of time. Um, we are going to our next topic, which is Rob. And, um, you know, how to tell a store no one wants to hear and he tell its really well. Um, so, you can go ahead and just share your story, your position, all that good stuff?
>> Rob: Absolutely.
>> Julia: We'll break out and bridge it back.
>>
>> ROB: For those of White House don't know me, I am Rob [INAUDIBLE]. I wrote a book. My daughter's life, she has a brain malformation and it's a speech issue. The longer we go, the more interesting manifestations we are experiencing. I also blog as fright monsters with rubber sort talk about those same issues. Um, for me, the whole process began in sort of an interesting way because I was already writing about Skylar and my family before her diagnosis. Society disability writing that I have done is kind of grown out of that from a totally different kind of writing. I was writing about being a new dad and kind of a light hearted way that I don't know what I'm doing. It was a weird transition from this light hearted writing to writing about this big thing. But I was already participating a porch trait of Skylar and who she was. I was trying to create that. Um, I have always remained conscience of my need to keep a level interest in Skylar and not just her struggle with her disability, but also, you know, just because she doesn't have a voice, if I could provide a voice for her that I very much needed to do that accurately and fairly and, you know, not be painting a portrait of this kid that I wanted to have, but to show the world of the kid they absolutely have. Because everyone in this room understands the process that we go through early on of it's almost like a grieving pro sess where you are letting go of that ideal child well, maybe not an ideal child, but you start to construct when you are having a baby. You can see that kid in college. You can see that kid wreck your car, whatever that thing is. Whenever you have to start changing that, you know, and you may think, Lat least I know my kid's never going to wreck my car. Now I have this whole other future I can't understand and I can't put together. And having for me trying to describe Skylar and frying to describe, um, the person that she is became very, very important because it was also helping need let go of that other Skylar. The other Skylar who's never going to exist. And, you know, and I'm mourning the loss of that Skylar and she's 11 notice. We've been doing this finish a while. And I'm an old man and falling apart and I can't remember any, I'll remember authority Skylar that never was. That's this kind of thing that stays with you and that's, you know, representing her accurately is very important for me. Um, the other thing you know, when I talk about keeping my writing of interest is very important for me. That's why I like this topic to keep the interest of a neuro typical leadership, not just typical readers, but people whose entire lives are in that world. And they're their view of our world, which is a very different world. That's an understatement of the conference. I mean, that world, the world their view of our world is a view that we give them. It's little window that we open for them. Um, I've also become convinced and this is a soap box I swear to God I will jump on and jump off. I've become convinced in the last few month especially very, very recently that there's going to be a necessity very soon for all of us for a allergy movement for disability rights.
[APPLAUSE]
It's it's a squire time right now. We're all watching all the scare boo debt sailing debate,bi guarantee everyone in this room is watching it differently because when they're talking about putting entitlements on the table and they're talking about putting all these different programs on the table, those programs are the programs that our kids, our families depend O. they depend on not just for quality of life, but life. We have to be in a position. We have to put ourselves in a position where we can frame this. We can frame this whole discussion in terms of civil rights rather than in terms of entitlements or funding or, you know, these are the programs that when times are good, well, then we can afford them. Almost liability luxuries and when times get rough, all of a sudden, our kids, their lives and the things that make their lives that gives their lives power and meaning, they're on the table. That astonishes me and it angers me and it make me feel like we have to start thinking in terms of a allergy, more unified disability movement. And that's hard because there's so much diversity in the, ah, in the disability community. How much of a community is it? I said to someone the other day it felt like a community whose members are chosen by random lightning strikes. It's a community that has Kennedys and Palin's. It's a community that has such a tenuous thing uniting us all and we have to build those unities with we have to find the things that bring us together. The writing that we're doing online is hugely, hugely important part of that because even if we're united, we're absolutely not going to be able to do the things that we needed to do alone. We have to bring a allergy community. We have to bring a larger neuro typical base community into our struggle or it's just we're always going to be these little yapping, peeping voices that are not going to be heard. I found that when I direct and this is my thinking when I'm writing. When I'm directing the things I want to say towards, a ah, a typical world record rather than us, I find that the readers that have kids and family members with disabilities they still respond really strongly. If im if im I love nothing more than to get an email from someone that says, you know, I never thought about that. That's an interesting point and now someone that is in that world is thinking, you know, they're thinking the things that we need them to be considering. But when I get an e mail from somebody whose in the same kind of situation and they're like, you said exactly what I've wanted to say. You put it in words that suddenly it becomes very clear. In speaking to an outside world, typical world reader, if I do it right, you know, which is a big if, but if I get it right, I can also maybe somebody who's feeling the exact same things, but if I can help them find those things, then that's another step towards advocacy. You know, the difference between me and any one of you is simply that I have I've achieved a platform. I don't know more. My experiences aren't any more valid than anyone else. The difference between you and people who aren't writing and blogging is the same thing. You're creating a platform. You are putting a voice to the things that other people are feeling. Um, using that platform to reach readers who are outside of our world, that, to me, feels like best use of my efforts, my resources. You're there. By using those resources to reach outside of our world really feels like that's what we really need to be doing. Um, the other thing is challenge I think it's okay to challenge your typical readers. I will call them typical readers because that will be our short hand. You know, don't be afraid to challenge the people that are reading. Don't be afraid to hold up a mirror. You can do it in a way that engages them. Every now and then I'll write some kind of angry you people need to listen. But mostly I try to engage holding up that mirror. The very best thing you can do is to emotionally invest your readers in the disability issues and things that you're putting out. There if they can become emotionally invested in what you're doing, then, you know, then the real world can start. They're not just, oh, that's that's this strange world that I'm not a part of, but it's interesting. It has to hurt a little bit. You know? It has to sting a little bit. If somebody reads what you have to put out there, if they're reading and they're like, oh, that's the pain that you feel. That's the pain that your family feels and it's a struggle. Like maybe more importantly, when you achieve big things and big things can mean something completely different from one person to the next, you know. Your big thing can be something that to somebody outside of our world looks like the most simplest mundane thing F. they can feel it's a big thing, then you're absolutely on the right track. Um, and I guess the main thing I wanted to say was that above all, if you focusing the bulk of your writing on people, on the people in your lives rather than the issues, I think the issues will express themselves. I don't think any of us can write about the things that we're experiencing and those issues won't have a poignancy and a power. If we're writing about the people, writing about ourselves, writing about our kids and families and the people around them, you're writing about the villains. That's an important part as well. If you're making it about people, then it will have a real power and presence around people's lives. One of the things they try to do and I hope die it right and I think when I'm at my best. If you're writing about that person that you love, that person that you would step in front of a struck, for a reader, you know, what a terrible situation in life, but rather they feel that pain and they feel that hurt. Then the next timing they're in a position as a voter, as a member of scoreboard, corporation. If they're in any position in their live to where they can help and contribute to a larger disability cause, they're not going to be thinking about the cause. They will see your kid. You know? When they imagine these issues, they're going to have a face and a story. I think that that's biggest and best thing we can do as bloggers. People don't want to read about your kids disability. I want to read about your kids and your lives and your families and people who are outside of our community are exactly the same way, a compelling story and that's the beginning and that's the beginning of really building something big and something that I have a suspicion we're really going to need really, really soon. So, I think I'll stop there.
[APPLAUSE]
>> I I'm sorry. I'm yelling. Um, I am wondering if you guys want to keep this large group do Q&A with Rob. It feels like we need to do that. So I'll stay on this side of the room and if you want to stay on that side of the room does. That feel okay for you guys? Seems right.
>> ROB: What will we do?
>> We'll bring up issues. It can be a statement about the topic of getting outside of the special needs community. One way, I think we did that, um, I don't know if you guys were at key note, but, this men con was mention in front of many people. So they're reading our hashtags. Hashtags
>> For me, that's probably because I started as a craft blogger before my son was ever around and then inducted into this club.
>> [INAUDIBLE]
>> Well, thank you for having me. [LAUGHTER] I think what I learned in trying to make my experience fit to my audience is really how universal our experience actually is. I mean, statistically, probably I've become convinced that there's the typical not typical. Like everybody has got something and but also just that we have all the same parenting issues just maybe compressed. My son has cerebral palsy. My husband was a big college football player. So, that was a big grieving process for him to go through, but, um, what we learned when my son was 2 and too young to witness this grieving process is that every parent goes through that. Once their kids starts developing their own interests and talents, my son might have been completely healthy and still not have liked football, but then my husband would have to grieve over that while he's cognizant of how he's failing his father's expectations. They go through that and just accept him for who he is and praise every little development instead of having to live up to expectations and I have to discover power in myself that I never knew I had just like every mother everywhere has to discover power in herself, every parent everywhere has to discover we just have it's all compressed just as much straight timeline, but that is all universal.
>> ROB: You know, the biggest difference is it's funny when you mentioned that. I thought wow. My father must have gone through a grievance process. He was a college football player in Texas. His 12 year old 6 foot 1 son entered band. The biggest difference in that grieving process is that for us, even if we get it right, even if we get everything right and you're getting everything right, um, you need to talk to someone because you're not actually.
[Laughter]
If you think you have it figured out, I want to watch you because it is kind of an interesting show. Even if we got everything right, that future is because everyone creates that future child in their head. For a lot of us, for most, probably for all of us, that future is a huge question mark. I sit here and think about how Skylar might succeed. I'm convinced she's going to, but I can't see it at all. That's a future person that is completely I can't even wrap my brain around that. There's that grieving process. I think for us there's also a level of fear and a level of uncertainty and I won't even bring up the scariest question that everyone has that what happens when I'm gone question which
>> That's another conference. An entire thing just dedicated to that.
>> That question is probably, you know, applied to a lot of them. I think that future because that future is not just that it's different than what we might have put together before, but it is also so uncertain. I think most of us have had to let go of that future perceived child, but we haven't really had anything very clear or very convincing to replace it with. You know? But yeah. I do think a lot of the parenting things we deal with are the same. It's just that I have this little extra helping of oh, my God. How am I going to do this.
>> Really quick.
>> We have a lot of hands up.
>> Really quick because there are so many things to say. You said exactly what we have been saying. Even though my daughter has a physical challenge and other kids don't have things that are as visual, but they're just as visible. We are also sectored into our own little things, but the we ban together more. Julia made that possible with her site. I think we're so overwhelmed with our own things. We should try to hug each other a little extra.
>> Julia: You can email it to me. I hope everyone will blog about this particular session. If you send it to me, we have a clearing house we put it on to. I will start links, but, um, send it to me. I would love for you to have somewhere to come, um, to hook up with everybody else because that is the point.
>> ROB: I think that's going to be hugely important. We as a community have not been very good about, ah, creating umbrellas. You know? Even within specific communities.
>> Julia: Right.
>> ROB: There are so many fractures. There are so many sort of tribal defensive behaviors and we have to get passed that because it's going to be hugely important still be hugely important very, very quickly.
>> Julia: We have to focus on what we have in common.
>> Divide and conquer is how we lose.
>> ROB: You know, school districts, communities, um, they understand that. They understand they understand what our weaknesses are. So we need to, I don't know. We needed to shore up around those weaknesses.
>> Julia: You and I will shore up on that.
>> I'm the mother of a son of a 25 year old with autism. I write an autism column for the San Francisco Chronicle. As they get older, it becomes more and more clear what the future will look like. I know you're scared of it. I continue scaring the crap out of you, but it gets easier as you get closer to the future. Things just get better. Period. I can't tell you how much my life sucked when he was young. Now he's delightful. So,ra, ra, ra. It's going to be okay is all I have to say.
>> Julia: Awesome. That's not a bad reminder and we should all tweet about 68 times. Age 11 special needs. I demand you tweet that.
>> I am Amanda Knickerbocker. I find for me one the biggest things is delays is temporary and expecting peoples expectations whether it's my mother or mother in law or sisters or whoever in the community who says she's going to be running around or she's going to be eating next week.
>> Julia: She'll eat when she's hungry.
>> Amanda: You know? I want to be the person who is cheering her every advance and I find so often I have to be the person who's like she may not be walking around for trick or treating this fall. You know? And I feel I'm robbed of being able to celebrate all of the wonderful things that she does because I'm trying to, you know
>> Julia: Celebrate them with us. I'm thrilled our child's alive.
>> Amanda: I don't know how to give people realistic expectations. For some people, I'm like yeah. Go ahead. Think whatever you want to think. But, ah
>> Julia: It's hardest when it's family, in my opinion.
>> Amanda: I mean, right now she's 17 months. So she doesn't know their expectations, but some day she's going to. Some day she's going to than she may not be meeting those expectations that people have. I don't want her to know that to know that other people. And so, trying to get them to understand how to be realistic about it and it make me feel like I'm being so negative. All the time about well, that might not happen when all I want to do is be like, look, she's 17 months and she just learned how to crawl.
>> ROB: You know, one of the things I've recently been doing reading a little bit, um, the work of Jon Vonyai. One of the things he talks about and he's been alive forever and one of the things he talks about is, um, authentic relationships with persons with disabilities whether they're invisible disabilities or whether they're extremely debilitating. Whatever that disability S. he talks about the steps that we go through in arriving at authentic relationships with persons with disabilities. And know these steps involve those first shameful steps where we run away or turn away. We are, you know, our own fears about our own future kids. Outside of this world the reaction. We get to a place of pity, which is probably not much better and then we get to a place of wanting to help. And he kind of goes through these steps and most of us are on this track. We advocate and do everything we can, but if that last step of really entering into an authentic relationship where you are relating to your child or a family member and this is important for the rest of your family, um, on their own terms looking at this child and not and this is really hard, but getting rid of that scale and that comparison. Well, your child is this age and is at such and such age, they should be doing those other things. It is hard to make that next step where you're looking at your child strictly as who they and are the world that they're in and the world they're create around them and their own abilities and talents. That's hard, but I think that's the key. I think the key is because and if you become very, very if you become immersed in that where you're dealing with a child that is truly authentic and truly not just accepting, but kind of existing in that placing, then is explaining that and bringing the rest of your family into that. That b the next big challenge, but I think it can be done. Whether that can be done with society at large, that's a lot more work, but I still I still have to believe that there's a track to get there where you look at a kid with whatever the issue is and you're not just you're not pitying them and it even goes beyond that whole who a little trooper. I now understand who this person is and what this person is capable of. I understand the obstacles, but I also understand that those obstacles don't when a child is developing with a disability and they hit an obstacle, they don't necessarily just top and wait for that obstacle to be removed. Our kids find their way. Whether it's physical or neurological, which is what we've seen with Skylar, which is this hugely deformed brain. 60 to 75% of her brain is malformed. She's using that brain. She's a high functioning kid and our kids find a way. As long as we understand what those other ways are, then we can start to see a birth picture of who our kids are. We get that understanding and we bring our families into it.
>> I think most of us came from outside of this community. And here's the thing. Through blogging and throughout awareness that we're generating in this table, in this room that goes outside, that goes to the whole internet through in our personal living and being advocates for our children and gaining confidence and taking them out, you gain this confidence. You gain this ability to say this is my kid. That is what he's doing. You know, whatever.
[APPLAUSE]
I don't care when you think of my kid. My kid has every right to be here. He's not living up to anybody's expectations, but his own. And if you can't see that, that's your problem. You know? Seriously. There's this whole kind of there's a real kind of fear mongering about kids with special needs. Oh, my God. You have a kid with special needs would be the worst thing in the world and you have to lay down and die. Don't how you do it.
[Laughter]
I don't know how you people do it.
>> How many of us hate our kids? We love our kids. The thing is having other people see that we don't just love our kids. We respect our kids. And we demand that other people respect our kids too. So just have the confidence to demand T. it's not going to come instantly because this is new to you.
>> 17 months young. In about a year and a half, you're going to find your groove with your family.
>> ROB: You learn when you need is to educate and when you need to step up and put something down.
>> You can do it.
>> Julia: Another question? Somebody in the back.
>> My name is Amy. I started this website I'm starting up a website to bring together parents and professionals that work with kids with special needs. My younger sister has down syndrome. I'm a special Ed teacher and grew up in the community and I absolutely love it. From an educators point of view, to say to the parent I know it's hard. I saw what my parent went through. Part of the reason is the young teachers and professionals behind you because we wouldn't be in the profession if we didn't love the kids. I think we make change because I know my mom after 32 years supporting my sister is just kind of I can't do anything. Nothing works. You know, they will keep take things away and I hate seeing that in her because she's a very strong with. I hear that in different conversations. I think we all ban together and we can make the change. Just to present to anyone that has a special need with looking at ability they do have. My sis, her has the biggest capacity for anyone I have seen in my life among upon other great talents and just to keep focusing on the positive and come together and work together.
>> ROB: Isn't that amazing that our kid I see this time and time again. I will clean it up a bit. As much as I see neuro typical kids and how they behave, I guess we're all grown ups here. I never looked at any of the kids with disabilities, um, that I've been around either in conference or Skylar's classes that kid is a rotten little shit. I never had the same reaction that I've had to more thank one typical kid.
[Laughter]
And I know part of that is I'm just inclined to give our kids a little bit more of a break. I've never I'm always amazed at how the capacity of love that I seem to see from our kids towards a world that hasn't really earned that love and yet, you know, Skylar is a lot more positive kid than I am. Her capacity for love seems just unlimited and I see that time and time again. Um, and to the point that I'm just ready to make a generalization about it. But I find that fascinating because my own capacity in relating to the world has become complicated because of this situation. But for our kids it seems like and know it almost feels like a universal.
>> Julia: They all get up and try again. It took her 3 and a half years to walk. She said what did I do then? Well, you fell on your butt and you got up and laughed. She said I did? They keep going. Where's the mic?
>> Hi. I'm Liz Hammel. I'm actually a disabled adult. I've had chronic pain for 8 years. One thing I wanted to mention is that, um, I have recently hooked up, um, the more traditional disability advocacy community, basically name wheelchairs. They're starving for us. The disability advocacy, disability rights, um, disability resources, they want you. Come find them. Um, go to go to ADA, website. Go to, um, you know, major be disability hubs and talk to those folks because they want to advocate for you, for your kids. They want to you advocate for them. They're very, very much aware exactly what you were talking about that this is going to be a very, very big issue in the next couple next couple years, next couple decades and they want you and they want your kids. The other thing I wanted to mention as someone, I'm in my thirsts, but I am somebody's daughter too. My parents had to go through a grieving pro sess when I got sick even though I was 28 years old when that hand. Um, your kids are going to become adults and they're going to make their way and I'm curious as to how many of you would encourage their kids to blog about their owning situations.
>>
>> ROB: Oh, absolutely. I want her to write a book so she can have a rebuttal to everything in my book.
>> That's awesome. Adults your guys' kids are my community. That's about it.
>> ROB: One point that you made that was really important is ton the law enforcement. That's first thing I would term anybody who is new to the disability community. Just do the reading and know what your rides are. I find people who think that they're going into an IAP maybe efficient first time, um, they have a lot more leverage than I think they do. I am very pro teacher, but I til the schools in general, particularly the administrators will not help you there. Because they're got own set of stuff.
>> Julia: I think what we need to do is move on to Shannon and we'll have nor time for Q&A all of us will sit out in the halt and talk, if you am. Shannon, this is really tieing into the same topic and issue, which is raising awareness, creating, um, conversations with those NTs. And hopefully opening up a dialogue and getting awareness and getting access is to services and advocacy and Shannon is literally one the best people aye seen in doing that.
>> Shannon: I am not sure I can address all, that but I am really, really excited to be here with this team and with you because honestly, I am sure she'll suck your brains out. That's why I'm here. That's why we created the community that we did the thinking person's guide to autism. Honestly, I can't do this by myself. I can't do this without you. Being Leo's mom. He's 10 years old and has intense autism. It's a privilege and it's a delight and it's really hard sometimes. That's not any way to disrespect leno any way. I absolutely recognize everything he does to achieve what he has, but I can't do this without your support. That's one of the things I want to talk about to help build a community to have conversations and draw upon the strengths. The model for me is something they created with two people in the room. Liz Deats and Jennifer Myers. The person's guide to autism. When we talked to Ms. Knickerbocker over here, most of us have not done this before as parents. So, um, what's really important for me after, you know, 8 years blogging about Leo and his autism, I came to realize I have learned so much from all of you from Leo, from the professionals, from the adults who have autism and I so wish I knew this when Leo was first diagnosed how amazing it would have been to transplant my current brain into my body in 2003. So what we did is got and discovered is it was a niche that had not been filled in our opinion in the autism community as an evidence based experienced perspectives from adults with autism, paramedics, veteran parents and new parents and professionals. So we created a thinking person's guide to autism in standing in a parking lot outside of a coffee house.
The reason we did this is a combination of selfishness and altruism. I think they're both available perspectives for us to have because we have to protect ourselves. We have to fight for ourselves. We have to fight for our kids, but we also need to make sure we are sharing what we know with the community at large. So, um, I think it's also really important to represent our communities as fit as we can to include the voices of as many people as we can. Again, there's no use I have my own blog. It's my own perspective and fantastic folks that come in and chime in. It might help somebody especially and you're good followed with Ipads and stuff like that. I write about that a lot.
[Laughter]
But I'm not sure who people who report like me who have a kid like leo, I'm not sure how much they will learn about my blog unless we bring in the adults with autism and people from different backgrounds and different perspectives. The Palin's and the Kennedys and unless we can learn from all of them, we're not going to be a fill functional community and we're not going to be able to automatic eye just said we're not going to be able to go out and have this community d front where we demand that people recognize who we are in our experiences and kids and get them the services and the supports they need. It's not gonna happen. So, you know, the critical things they think in terms of this community building that we have established, um, actually a lot of it coming from having done BlogHer for the past few years. BlogHer is contributing editor for parents with special kids with special needs. I don't care if you agree with me. I really don't. I need to you respect me as much as I respect you. If we all just have the same opinions, if we all have the same experiences, we're not gonna learn anything. Right? But we have to respect everybody. We have to be able to understand that everybody's experience is valid and this is not easy. This is very hard. But if you're willing to stick to your guns, there is phenomenal learning that takes place. We have some knock down, drag out awesome battles with all sorts of different I don't know if you call them factions, but people have different perspectives. We have stuck to our guns. We remain respectful. We have kept doors open for listening and learning. I would say that 95% of them resolve really well and we've actually had some of those battles deepened into valuable relationships and at least once of mutual respect where as if we had I'm pretty pissy, just so you know. I'm grumpy. I'm easily irritated but, in the capacity of this, I think the community is more valuable. We've had amazing link experiences. So we prize linking and support base scale above defensiveness and I think that's really hard to get by because if people attack you personally, it's really hard to just say, really? Especially they're talking about your son and your child and your parent or somebody you care about or something that you're where I went personally about like a really deep emotional experience, you know, it's hard. It's hard to be cool.
[Laughter]
But it's so valuable. This is something that took me a really long time to learn. I think that these are the communities that deepen into, um, places where people really value their experiences. I can't tell you. The person's link guide to autism is an experience I never would have anticipated. The kinds of reactions that we get to are posts both on the blogs and on the facebook community. I would encourage to you check out both. Have just people I never heard of that come from all over the world. They have these amazing perspectives. Again, I never considered. In terms of [INAUDIBLE] community, I'm not a very big facebook user. My profile is private. I don't really want to talk about facebook because being the parent a child with autism, I have some fairly guard social space. And I can talk to you because I'm not having a conversation with and you talk at you. Right? So I do not seat value of facebook at off.
But we owned up thanks to Jen Myers. If any of you need any social media advice, especially if you want to pay her, talk to Jen.
[Laughter]
But she said no. We have to have facebook. Oh, God.
>> [INAUDIBLE] no more!
>> Shannon: We have thousands and thousands and thousands of hits and all these discussions with 35 people and coming in some chiming in and this community is Alie.
It's vibrant. It's only a year old. You know? But the thing is we found a niche that people hadn't yet addressed. You know? We didn't want to reinvent the wheel. Who wants to reinvent the wheel that's hard. You need tools. So, um, if you can do this, if you can maintain this respectful disagreement, if you can address this niche that hadn't been addressed yet, if you can moderate, if you can curate, if you can be just absolutely actively engaged and have these standards, this community we're so proud of T. it's so wonderful. It's such a great place to be I hope you can all visit it today. Especially posts we have today is something about that speaks to probably every parent, professional and adult in this room about how behavior is communication. Behavior is everything. If we don't understand why people behave the way they do and we talked about this before. It's about you have to disentangle your Ego says a parent eventually. We're all ahead of the curve. This is the kind of thing that, um, I think it's just important and it is all coming back to forming this community and learning from either. And I probably haven't addressed half the things that Julia wanted me to. But that's about the extent of it, I would say.
[APPLAUSE]
>> Julia: It goes along the same theme as Rob said building communities and a place to gather, not sectioning ourselves off so much from each other based on disability. I think it's past our start so we can gain a birth presence together. So could I open up it to questions? We have about 22 minutes. We will go back there and then up front.
>> Um, I just love your blog. I'm an autism mom myself and I want the same type of success with my blog even though I'm just getting off the ground and, um, like the gentleman on the board, I don't just blog about autism. I write about things going on in the black community as well because through the research and discoveries that I've learned there having a child with autism and one with ADHD is the black community is full of special needs too. We just don't realize that. And when die research and I realize that my 7 year old son with autism is more functionally illiterate and academical than the average 7 year old his age. I want to form a bridge. That's scare.
>> Shannon: Blog for us at make person's guide.
>> I would love. To I would love to do one next. I will do another guest post, but then I would like to come to you to do a guest post as well. Now, there's a problem I'm having I tend to get more e mails than comments. I'm thinking are people embarrassed to say. I can't figure out why somebody would e mail me instead of just putting it in the comment. So that's one of the issues that I have right now how I can get beyond that and have them post it so that's right people can read it because I heard by law I'm not really supposed to take e mails and cut and paste them into the comment section.
>> Shannon: Liz says she would like to address this.
>> Hi. I'm Liz Deets. I blog and speak of [INAUDIBLE] and they fume the thinking person's guide to autism. This may vary by state, but as far as I know, it's perfectly legal for you to cut and paste 18, mail. And I have done that in the past in my own personal blog removing the identifying information. So, somebody Shannon Rosa had an e mail that she has a member with this and I will post it to my blog removing the identifying information. And I also want to address what this wonderful woman has said which is I'm look around the room and it's an awfully white look room you look no. But in real life, in real life, autism knows no creed or color. Any of the disabilities don't are not color coded and that's another area where I would like our community to reach out and extend the helping hand to people who are too shy to talk about it. So, I'm done.
>> Julia: Who else had their hand up?
>> Shannon, I wanted to saying? To you about the comment of special needs and then I want to expand on something. I am involved in the sensory processing network. So I am here to represent that. We're a community of parents who blog about sensory challenges in our day to day life with a variety special types kids from ADHD to autism to bipolar, et cetera. I personally am not a blogger myself. I'm in corporate business. And I have two children that have individual special needs, one being on the autism spectrum and sensory processing disorder and my other son actually has, um, a very rare immune deficiency where he has anaphylactic reactions to rare causes. He can be sitting next to a child that is eating something all of a sudden, his throat can swim. So I have two different challenges. What I am personally try ago do is faking my experience in the professional industry and develop, um, a global leadership mentorship program around the world which, I am working on operate from working with SPDM so I can have money for children on being autism and need allergies and such. So I just wanted to mention because I feel I'm not in any category, but I. Stood mention that to those of you here to. Going back to the special needs comment about how people say to you as a parent oh, how do you do that? You know, that's always interesting because I feel so blessed to have two children with special needs like my heart is so huge because my oldest son is so tiny because of his immune system. He's made fun of because he has to sit at a different table or his lips swell and he these have this E53 pen. He has this unique sweetness about shim. Hinds everyone. I couldn't have a better child. You know, honestly, and then my son with autism the little things he does are simply amazing to me and for me to be able to experience that as a mom, I can't explain what that's like. The other day, he came in the room and he's 3 and a half and he was behind the door and he said oh, you scare me. I just cried because I'm like oh, my God. He had a feeling and that's huge and how amazing is that.
[APPLAUSE]
And so I just feel blessed. So I don't feel it's a curtain. I jumped to share that with everyone.
>> Julia: We had somebody here in the middle I will come back to you in the back. I promise.
>> I wanted to comment on what Rob said about disability rights being the most important political movement of this century. It is. It is the most important political movement of the century because it strikes at the heart of our fascination with independent. It strikes at heart of our desire to be isolated strong, powerful, self reline the individuals and that's American dream, right? That you can make it on you own and all that. That's the so, when we're pointing out to people that our kids need services, which is, of course, we do all the time as advocates what, we're doing is the reason we're [INAUDIBLE] all the time or at least what I experience how could you possible dough that. That thing has been brought up. Oh, it's so sad and awful. All the things we experience around that because people are tear feed about us because they feel they will have a disabled grandchild or a disabled child. We're their worst nightmare. We have to make it less of a night is mare, which all of our blogs do make if less of a nightmare, but say we're all on this continuum capacity. I really don't like disability. I like capacity. We're all on a capacity continuum and we're all going to be disabled if we live long enough.
>> Julia: Ellen over here and thin swear in the back corner.
>> I wanted to add one thing about posts. People's e mails in your blog posts. I actually ask people who send me e mails if I can just take a chunk of what they said and use it. I feel more comfortable that way. And they say yes. Then is just adding on to the discussion about getting on to people and being aware of what is going on. Um, I rarely get sad about what happened to my son. You know what, I don't go their all the time. I write about fin things a lot of times. I will write about ten things I will never program into Max's speech ap. Will you marry me, Snooky. By doing that, I attract people or kids who are typical. They will read my posts then. If they know I have a service HUMOR about it, they will read the time and help me spread the word then. So I think I can write the most depressing blog in the whole wide word, but I think I try to so a sense of humor and that helps keep my audience.
>> Julia: Agree. Unfortunate Lee, I use it for therapy. It is not always uplifting. And then way back here and then to Kate. And we have about 12 minutes.
>> Hi. I blog at home in the world and part of the reason that I blog pseudonymously is in my other life, I'm a school board member.
[Laughter]
>> Julia: Wow.
>>
[Laughter]
But I'm also a mom of two special needs adopted from Russia children. Beautiful, beautiful boys with a lot of challenges. But I wanted to stalk more about what it's like in real life. In Massachusetts, school board members deal primarily with a budget and we get tax payers coming to us, you know, on an annual basis. And this is part of the reason that I wanted to reinforce something that Robert said I rememberer about disability and advocacy and reaching out to communities that maybe don't have a disabled child in their families or anyone close to them. I started to say earlier that I get approached by tax payers at least once a year. They're usually older people that didn't have the IDA, legislation to work. They frequently use word before. Of course, one older gentleman did it on a day that I had a particularly bad day with my special needs skid and I let him have it. I won't go into that except to say our children are not burdens and everyone's got issues.
[APPLAUSE]
>> ROB: When we talk about how much money goes into special education and goes into all the things that we need, people talk about that money, it makes me wonder, do people talk about the boulevard bridges that don't collapsar on the burden of just the if your house catches on fire or if your community is hit by an earthquake? I talk about shifting the discussion of what our families and what our kids need to something besides, I know, an economic budgetary issue. That's exactly what I'm talking about because this idea of a burden is something we have all heard before and it is maybe the number 1 thing that in discussions, um, with our communities and with political leaders I think that's number 1 altitude that has to somehow change. Again, that's something we all heard before and you're in a position of heard it differently, but we've all certainly sat there and heard someone make statement.
>> Shannon. All those people who have this problem, I bet you 90% of them went to public school. You went to school. You are the Ben fish area. You are seriously going to take that away there the people who come behind you? School board meetings make me crazy.
>> Know if you all follow on hashtag, you so the things. I don't know how you do it. I have twins and I am strolling them around malls, but I think there's a lot of validity in saying I never had a problem in someone saying that to me ever. I have to say it's hard. It's hard for my kids who have special needs. I don't feel lucky. I don't feel lucky about it. I don't feel my kids are a burden. I feel lucky to have them. Do I feel lucky they have special needs? I don't. And I think it's say that and I want everyone in the treatment to feel that. I come to these things and it's like ra, ra, special needs and I am the first one to stand up and say I am a parent of kids of special needs. They're help think my kids and in turn, they're helping you but, it's took have that emotion and have that validity. How are we going to have people help us when you say that. When you understand my kids are getting this in schools? That helps. I think it's okay to help people understand and how they can help you.
>> Shannon: You can tell people by saying you invest in our kids when they're younger. It's a lot less expensive than it is to support them as adults. Our kids are good investment.
>> Julia: I concur. My experience with watching my son almost die was the most excruciating thing in my life and watching him, um, want to kill himself by putting a rope around his neck in the middle of the night and I was lucky enough to hear is excruciating. Don't feel blessed about that and I don't feel lucky. I don't feel I have some lesson to learn as somebody told me in order to keep moving on. But the one great thing I know is that among everybody in the room, it's okay for me to have my experience and my feelings just like it's okay for you to feel blessed by, you know, your experience. And I do not begrudge you that. But I think probably the bigger thing that has come out of this and it really wasn't a topic point hugely was that banding together is what is going to be helping us as individuals and our children in the future. And however that happens, you know, online I think is probably the most inexpensive way to connect and do that. And so I just add into what Kate was saying. I will come here and go that way. Somebody has the mic.
>> She just handed it to me. I'm Anita from momsrising.org. Thank you. It's a real honor to be that the particular session and I wanted to come and listen to the stories and what I wanted to say kind of related to these recent comments about sharing your stories and how they can change minds. We found that to be so absolutely true. We have done a ton of advocacy around healthcare and most recently around medicaid and in particular, we had a bunch moms who were working us to share their stories around, um, mothering and parenting with special needs children. And, um, we were age to fly three moms. One of them with her daughter to the White House to share their stories and, um, it was so incredible. These senior White House officials gave such they were asking the right questions, you know, about their experiences and they have no idea how helpful we were talking about medicate in particular, but some of these mothers and kids, you know, they wouldn't have made it without these programs and yes what you were facing is early intervention. These are the people making and influencing policy and they have no idea until they heard the stories. So I just want to express, you know, deep, deep gratitude to awful you who are sharing your stories on blog comments or even reading stories, and um, passing them along because in the advocacy content for us, it make a tremendous difference. So thank you.
>> Julia: We have about four minutes. This crowd, there's three F. they're really quick. 1.10 seconds.
>> Okay. I'll be fast. I am Sarah Gilbert and I blog cafe movement I had been belonging for a long time before I had three kids with special needs. It is not sort of thing is that people think was born in them, but they think that it was me or something in the environment. So, um, I wanted to kind of react to the thing about advocacy. I don't have energy for advocacy. A lost times I just get so exhausted from advocating for my kids because what I'm getting at school a lost times is judgment and from other parents and from the teachers and from the professionals. And so I just get owner out.
I ended up I didn't take my child out of school. They suspend him at the time and he wouldn't go back. So I took my kid out of school and what I found is way more useful to me than advocating for my kids and just telling my story and so I think that what you were talking about with people sharing their stories I'm not gonna fly to Washington and tell my story. I'm just gonna tell it, you know, where I am and for all the people who say, you know, how is your kid ever going to get along in society. I'm like F CK society. Not that this is a bad kid or which is a kid that's going to be successful. I was voted most likely to succeed in high school. Some I went and got an MBA, and worked on Wall Street. Now I sit at home and write and I Neil this is the success that I wanted. I don't go to an office. I'm not on time for things. So I think kids can get along if we sit and change the expectation of what success is. Success doesn't mean $500,000 in an economic Mercedes. Success means being true and hopefully, um, not being a shit, though my son is sometimes.
[Laughter]
>> I'm Cheryl from abilitypath.org. I wanted to thank everyone in this radio. I've been in this field for 30 years and the things they see are happening are battle community and driving social change is now because of you here in this room. The fact that you're telling your stories. You're got people who are listening to your stories and a quick, um, success story is that we've been reading all of you for about a year trying to we've been in direct services for 90 years, but we've been online to really hear what the emerging issues and are what really needs to be addressed. What happened last December is the bullying that is going on in the schools right now. We ended up with a 60 page report and also had a toolkit of what to do about it. I was flying to New York to be on CNN, to be on Good Morning America. They had kids with special needs or a brother and sister. There is now pending legislature. Hit state super intendant California to call me and talk to me about what he docked to work with every teacher in California is to turn this around. So, the enormous power of building the community and what we can do I'm more hopeful than I have ever been and I'm thankful because I know all those stories are painful to tell and by doing that, that's how we'll make change.
[APPLAUSE]
>> I am just going to make a plug. If most of you probably know that on supports for specialneeds.com, we have a support list. I go on there to see who I should be reading. I know Ellen is there and vibe there and many others of you. So you should be there too if you're not. This is the start of the umbrella and all of these other groups, I hope you linked us and let us link back to you so we can all find each other because it is more about what we have in common than what we have separately.
>> Know Julia. We're going to wrap up it. One last thing? We need surveys do. Surveys. They're black and white on your deck. You can leave them there. We'll come to the table and pick them up. If you hated it, don't say anything.
[Laughter]
I'm kidding. We'll use that to talk about next year. So it's really, really, really important because we want your feedback on what we should do better, not, okay? Am.
>> just quickly. After Sarah had just mentioned this about, um, how it's so hard and she's too tired to advocate, I cannot tell you how oft envy heard that from people some the problem is although I want to celebrate everybody advocating for their children, if that's criteria bay which our kids get help, then it will only be the special needs kids who are raised by the wealthy, the educated, the literate, um, the white, the powerful, the undisabled. The reality is not everybody can advocate for their children and politically. We have to find a way in the community to say look. This mother is overburdened and we've all got to help her. There's got to be some sort of way. It doesn't we can't just keep saying oh, we're going to fight this battle on our own. We're all in it together. Thank you.
>> Julia. Thank you, everyone. Just a couple of quick housekeeping notices. Without they're waiting to come in. Today on special needs, I put the first survey you guys did, which is very interesting to me and also the hashtag. Use that for your blog post. I am looking on bloggers to have a post on August 15th about this session. And I will make sure we promote it heavily. And I know you guys will too. So that we can have everybody linked to posts. I'll collect them. My card is? That pouch. Take the pouches. Do not make me ship that stuff home. Those orange balls. Don't let your kids chew on them. And I just want to thank you guys for coming and participating. Thank you.

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