All People Who are Bipolar are Violent

[The one picture I had of me was awful, so here's a picture of the back of my co-presenter's head]

A follow up to Sunday's post. I can't believe I didn't write about this at the time. My brain is moving a bit slow, hopefully I can capture what I want to say. I was asked by a friend last fall to present a one hour workshop on self-advocacy during a conference for disabled girls ages 12-25 (so technically I should have been an attendee, not a presenter, made it awkward in my head). She couldn't make it, I filled in. I started of the presentation the same way I've started every presentation over the last 10 years -- talk about myself.

"I'm Cheryl *censored* I've been involved in advocacy for 10 years. Yadda yadda yadda. 3 years ago I was diagnosed bipolar..."

That's when I was interrupted by an attendee. This woman was 21 or 23 or something and has a cognitive disability, which I would like to be able to blame, but truthfully I blame the media. I blame her disability for her lack of inhibition and willingness to ask, which I am thankful for.

"I heard all people who are bipolar are violent," she said.

I was taken aback and unprepared, and second guessed my response. Being that it's been almost four months since that conference and I'm just writing this now, I don't remember word for word what I said, but here's the gist of it:

"For me," I started, with a stress on the me, "I get very depressed. I spend a lot of time by myself and have a hard time being with other people. There are different kinds of bipolar, and the kind I have means most of the time I am depressed, and I found out I'm bipolar because medication I was on made me not sleep as much and talk too fast, and made me very energized. But then we switched my medication around and everything evened out so that I don't get too depressed and I also don't get too energized."

That's close enough enough to what I said. I took great pains to keep my answer to me. When I went through my trainings we were told to talk about us. I'd spent almost a year and a half at that point going to OOO where we take great pains not to give advice, not to tell someone what to do, but rather share our experience and how things are for us.

So that is what I did, because that is how I've been "brainwashed" to talk about disability. I truly believe that you can't generalize disability because everyone's experience of disability, even the same disability can be so vastly different. I didn't want to say "No, people who are bipolar are not violent," because there are some people, of course, who are. But most aren't (this workshop was before the Giffords incident FYI). Should I have said that? Should I have generalized? Not stuck to just talking about me? I don't know if I actually answered the question. Did I? What do you think?

For Maryland Residents: Leadership Empowerment Advocacy Project (LEAP)

The Leadership Empowerment Advocacy Project (LEAP) began in 1990 and is supported and funded by the Maryland Department of Health and Mental Hygiene’s Mental Hygiene Administration. Through the years, LEAP has offered an opportunity for mental health consumers to learn the leadership and advocacy skills necessary to make a positive impact on Maryland’s mental health system. Through intensive training the participants are provided an opportunity to network and acquire resources enabling them to further consumer involvement in the public mental health system. Individuals who graduate from LEAP have gone on to become directors of peer support groups, members of workgroups and boards that affect mental health care, and testify, lobby and provide important information to our legislators in Annapolis. This year we will also provide information about federally funded programs that promote recovery.

Each workshop is taught by an expert in their field. Workshops for this year include: Leadership Skills, Advocacy Communication, the Recovery Experience and Concepts, Partnering with Policy Makers: Technical Assistance Needed by Administrators, How to Engage in Changing Mental Hygiene Administration Policies, Federally Funded Wellness and Recovery Models, How to Engage in Changing Federal Policy, Medicaid 101, and Using Medicaid Monies to Support Recovery Efforts.

The LEAP training involves a four day commitment to participate in intensive workshops. The dates of the training are June 22^nd through June 25^th. The training is provided at no cost to you with room and board included. You must be able to provide your own transportation to and from Bon Secours Spiritual Center in Marriottsvile, Maryland. Transportation costs will be reimbursed. Participants are chosen by an application process with a total of 12 consumers accepted. If chosen, you will be expected to make the commitment to attend the entire four days and to continue the vision and goals of LEAP by positively impacting the mental health system with your advocacy and leadership.

For more info contact:

Susan Kadis
Mental Hygiene Administration
SGHC – Dix Building
55 Wade Avenue
Catonsville, Maryland 21228
skadis@dhmh.state.md.us
410-402-8407

More on College & Disability

As I mentioned in my last post, I just came from the Leukemia & Lymphoma Society's Maryland Chapter annual Bright Horizons conference which was being held over in the union. The conference is held here every year and is all about childhood cancers. This year's focus was hospital to school transition. It was eh, but it was required for class. Maybe if I was already a child life specialist, or still enrolled in the child life track here, I would have cared more. I dunno. As an aside, I was able to get ahold of a free copy of the video Why Charlie Brown Why? (links to youtube, & there's a book too apparently) although the copy was a VHS and not a DVD.

First there was a Dr from Hopkins Children's who spoke (we are 25mins from there), then there was an educational lawyer who spoke, lastly a panel of all sorts of people (parents, a Hopkins child life specialist, etc). I was VERY excited that both the Dr & the lawyer referred to 'children with cancer and other disabilities.' YES!!! That's one of my big pet peeves--to get people to recognize that medical conditions, diseases, whatever you want to call them, are disabilities in their own right and have just as much impact on a child/family as say down syndrome. The Dr talked some about the cognitive impairments that can come as a side effect of chemo and the lawyer talked mostly about the need to get a child an IEP or a 504 plan who may not have previously been identified, and how to go about doing that, so it makes sense.

However, I had figured the conference would be more focused on younger children, elementary school age. That was not the case. They tried to cover all ages, although both sets of parents on the panel had young children. The lawyer did a good job of talking about high schoolers, accommodations such as an abbreviated school day for all ages, and even touched on the possible need to hire an educational consultant, mentioning ever so briefly on how they could help figure out the appropriate college setting, 2 year school vs 4 year etc.

Um, but in all the talk about the lasting cognitive impacts of cancer treatments and the pressing need to get educational assessments, she didn't mention that colleges have this weird rule that requires assessments to have been done w/in the last 3 years. So I had to mention it. I mentioned the fact that even if your kid has had a disability since they were 6 you still have to get it redone. I forgot to mention that DORS (VR) will give free testing to any Maryland resident ages 16+ free of charge period. That's how they determine eligibility for services, which is why it is always offered even if nothing else is. I believe that is the way it is in all states, although don't quote me on that. I also mentioned something that is particularly important to cancer patients, which is that I think at all schools w/appropriate medical documentation you can live on campus whether or not you are a full-time student. Nobody knows about that. The picture above is of a dorm here on campus. I won't go off on a tangent about what I think about those dorms.

I wish they had broken up into different rooms so that concerns could be addressed to different age groups and/or professionals. A parent of a 6yo might have no idea that they need to go out and get a nueropsyc now, and be thankful and go and do it, but they aren't going to remember that in 10 years they have to get it redone. And there was a school nurse there that was looking for advice about a 7th grader at her school who was diagnosed w/leukemia in Oct. They might have been able to have greater attendance if it was broken up and advertised that way. I thought it was low and would have been very pathetic looking if it wasn't half filled w/students. *sigh* at least they tried and made a pretty decent effort at it. Read yesterday's post. Not everybody does...

What About ME!?!?!

[image description: b/w clipart of a girl in a manual chair w/her hand raised high]

I feel rather odd not having blogged for a whole entire week. I think I ODed on the whole blogging thing in Jan/Feb and I need a break, even though I wrote down a long list of things I want to blog about (this one not included). Anyway, the post now...

Today I went to the CMS MFP conference (Center for Medicare/caid Services Money Follows the Person) which was down in Harbor East (Baltimore). For my senior seminar in family studies class we have to go to 2 conferences, so this is #1. #2 is tomorrow evening. The Leukemia & Lymphoma Society's bright horizons conference is held in the union every spring. I chose the CMS conference because I have a very good friend who was presenting today who wanted as many Sunshine Folk there as possible, and my other friend and fellow CDRC member works for CMS and was in charge of the whole thing.

The day started by having to get up 2hrs before usual, earlier then I remember getting up in a long time, because the conference was downtown and started at 9am. It was still dark out when I had to get up *whine* and very cold in my room. It was extremely hard to get out from under the covers. So I missed my paratransit ride :-( I can't take a cab into Baltimore anymore because the state cut how far I can get on the discounted rate, and, well, I lost the card again the other day anyway... So in the freezing cold 13 degrees fahrenheit I raced over to the library to use google maps to figure out my route via bus, which is totally free w/a paratransit ID. The route seemed easy enough, but I got totally lost. Anyone who knows Baltimore, I somehow randomly ended up at the inner harbor after I got off the bus, which was good being that I was looking for E Pratt st, but I guessed wrong, turned the wrong way, and ended up at the convention center (off of W Pratt st, totally missed the fact I had crossed over) when the hotel is in Harbor East. I was an icicle by the time I texted someone, turned myself around, and miraculously found my way there. To top it all off, my chair battery was blinking angerly at me on 1 bar this whole time and I was petrified it was going to die. Thankfully it didn't. So I was late, yes, but the requirement for class is only to be there for a minimum of 3hrs.

*sigh* It makes me feel better to get that out.

I went to 3 sessions today. I can't even remember what my sessions were technically on. All the names sounded very interesting except what they all were really about was needs assessing, dressed up in different contexts. Employment, person centered planning, and community organizing. I've done some theoretical needs assessments, in fact I turned one in yesterday for sr sem that everyone in the class has to answer and give back to me, and frankly I've had enough of needs assessments over the years. I've had to do them in too many classes. And right after I just did one, gag me. Even so, I was able to pick up a little tidbit in each session and really did learn something. In fact, I had had a return paratransit ride for 2pm that I canceled during lunch so I could stay for the 2 afternoon sessions.

I've totally gone off from what this post was supposed to be about: the first session. "What about ME!?!?!" The session was about employment & community inclusion. Getting people employed post-nursing home? I dunno, but employment is a hot topic nowadays, so I picked that one. That was not what the session turned out to be about. It was somewhat about SSI and ticket to work, medicaid buy in, etc, but then I stood up, asked a question and totally derailed the entire conversation.

[image description: b/w clipart of a girl wearing AFOs w/forearm crutches (left) talking to a girl (right) w/a backpack on]

The person presenting started briefly talking about how there is this big unemployment rate for PWDs 18-26 and after that it seems to go down some. PWDs aren't steered towards thinking about work post-high school. They're steered towards adult service providers and day recreation programs. Academics need to be balanced with work preparation she said. She very briefly mentioned the big statewide transition program in New Hampshire (where she is from) for 18-21. Someone stopped and asked a question, and then before she could get another word in and try to get back on track after she answered, I stood up and forcefully asked a question.

"This transition program that you're talking about, is it for students still being serviced by their public schools? Because what about people transitioning from high school to college? I'm 24 (it feels weird to say that), I'm about to graduate, and I feel like we are a very underserved and ignored population."

People thanked me for bringing up the point. I said that I was never in special ed, got rid of my IEP in 3rd grade and had a 504 plan all through school, and there was no "transition" for me. "What about trying to steer students to college? Many students don't realize that they can go to college, that they are capable of it. It isn't easy, it certainly hasn't been for me, it's been 6 years, but many students can do it." There's just things like school systems not realizing that students not in special ed are still eligible for voc rehab funding. Who knew the state pays for crips to go to college?

The state of Maryland I think puts on a big transition conference every fall. I know of the one that happened in 07 because I got on this list after I got my workshop grant. I had wished I didn't have class so I could have gone. I got the thing w/all the sessions on it. There were so many broken up into all sorts of categories. Pediatric to adult health care transition, school to employment transition etc. I was particularly impressed by how much they had geared towards health care. But, there was nothing in all of those sessions covering transitioning to a higher education setting. Not even one. It got me enraged, just as the session today ticked me off unintentionally (although more so because that conference had been completely organized by our state's voc rehab). If voc rehab doesn't even know what to do w/the kids whose educations they're going to be footing the bill for, then, well, we're all doomed.

Another thing, it seems as though a lot of the honest to g-d professionals that were in that room w/me had gotten into their field as a byproduct of having a crip kid. Which was totally cool because they were so passionate about what they were doing on the policy level even. But one of them mentioned how the expectation that professionals (mainly drs and such) have for kids very early on in life is projected onto the parents who are then completely brainwashed by the time their kid is 18 that they truly believe that their kid is incapable of working (which by and large is not the case). So then, um, the kid believes that too of course.

Another parent-professional brought up how important it is to get the parents involved, to get them engaged, to get them totally on board with this 'hey your kid is going to go out and get a job' thing. Ticked off lately by some conversations I've had recently with the person who runs the 18-21 high school to work program right here on campus, I had to say something to that of course. I had to say that I semi-disagreed w/her. "What about getting the student involved? It's more important to get the student involved then the parent. I mean, yeah, parents are important too, but your other child all along gets other messages about planning post high school and figuring out what they want to do w/their life. Do that. The students need to believe that they can do something even more then their parents do."

Sheesh. Treat your special ed students like they're no different then their regular ed peers and they will be. Treat them like they should have goals and aspirations that are just a little bit of a reach for them, and they will meet those goals, just like most other students. By golly, even some students who have spent the majority of their time in special ed or in inclusion settings with tons of intensive pull out services can go on to college. It is possible. I've heard the stories. Refer to The Short Bus. Work with both your special ed and regular ed students w/disabilities to find strength-based strategies that will help them to be successful in life. Strategize and problem solve with them. As the guy said today in the community organizing session I went to, don't come at a problem w/the answer and try to fit the problem (or fabricate a problem) into the answer. Come at the problem w/a question. Or questions. Seek out the answer and then ask some more questions if you have to. Then the solution will actually work. What a concept!

I wish I could attach a flow chart here. Ask yourself, 'can this kid go to college? Do I think they might be able to succeed?' That is the essential question. If the answer is no, ask yourself if there is even the tiniest voice in the back of your head that says maybe. If the answer to that is yes, or if the answer to the first question is yes, then you have come up w/your problem. How? How can we make sure s/he succeeds? Start asking yourself, the kid, their parents, their outside support system, the professionals they work with. The kid in particular might have no f*cking clue. Their shrink is a good place to start in figuring this out. Refer to the bottom of my blog roll. Everyone Needs Therapy. I truly believe that.

I went through freshman year failing everything, but surrounded by people who wanted to help me. Except that they kept waiting for me to be self-directive; to tell them exactly how to help me, exactly what to do. I didn't know. I was in uncharted territory that year. I'm all for person centered planning. It works way better then systems centered planning. But sometimes (most of the time) it needs to be a collaborative effort between the client and the professional. Get down and dirty in the trenches with your client. You need to be on equal footing with them. As a professional don't assume that you know better then your client. You don't. Who could possibly know better what is best for me then me? Help your client to fill in the gaps. Strategize with them, facilitate.

As the guy in the person-centered planning session said, you have to look at what is important to your client as well as what is important for your client. For example, it may be important to your new crip college student to make friends, establish social connections. But, it is important for them to go to class. That's what they're there for. Don't discredit your client's need to have a social life and tell them that the only way for them to ever graduate is to live their life for the next how ever many years in the library like a recluse. Help them to find their best balance between socializing and studying. Based on that particular student and their disability issues this may mean altering their course load in order to accomplish both goals. That idea may be unsettling to you at first, or the kid, or their parents. But work your way through that--or send them to a good shrink.

But above all, just start thinking about kids like me. Start discussing kids like me. Keep them somewhere in your mind, even if it is not the very front (hey, we all have to start somewhere). We're out there, we exist, and we need just as much person-centered strength-based goal direction as the next kid. We're not in special ed (or we are, but we're more high functioning then your "typical" special ed student) but we need more specific, more custom tailored person-centered plans then regular ed students. We're lagging behind because we're being left to fall through the cracks (someone please correct me if I am wrong and this is not as dire as I am presenting). It doesn't have to be this way. We don't have to struggle quite as much. Just do something.

*off my soapbox* If you like my clipart go to
http://school.discoveryeducation.com/clipart/category/stud.html
There is never enough good crip clipart to go around. I have such a hard time finding it when I need it. Found it by accident tonight, wasn't looking.