I'm a mentally ill person raising another mentally ill person. With chickens.

Archive for the ‘Disability’ Category

D is for Determined, Decided, and Depressing

So I am behind again, but I am letting myself off the hook for it and plugging away, because I don’t want to give up. I may not do this challenge perfectly, but I am determined to do it the best that I can.  Getting back on the horse isn’t easy, but it is worth it.

So the decision about back surgery has been made.  It’s happening because it has to.  The nerve root needs to be decompressed sooner rather than later.  I am afraid that it is already too late to prevent at least some permanent damage, and the fact that all the doctor will say is that the numbness is the last thing to go away is not reassuring.  But I keep telling myself, and everyone else, that the one positive thing about having the bottom of your foot be numb is that I can step on a Lego and barely notice. So I guess that’s a perk. I could have had surgery Monday,  but I didn’t get to my physical on time Thursday, which was also the day my phone was broken, and the surgeon’s office set one up for Friday but due to a lack of communication on their end didn’t call the house phone number I’d left them, so I didn’t get to that one either.  Sigh. It was a tough couple of days and I think there’s a few more tough days ahead, but I am on the surgery schedule for the 19th and I have a physical scheduled for the 13th.  They ARE going to try and move that up, because the situation is deteriorating, but I guess we’ll see.  Rural medicine does have its downsides. 

And that brings me to this depressing article from the Washington Post that my father in law posted on Facebook.   We don’t know why it came to this’ is about the increasing number of early deaths of white, lower middle class, women from the Midwest.  We lost my husbands cousin to circumstances similar to the ones described in the article, and I have a friend who I expect will not see 60 for these same  reasons.  I didn’t realize, though, that this was a wide-spread and recognized phenomena. And that is truly a depressing thought.

Brave

I’ve been watching American Idol this season, because it’s the (cue stadium announcer voice) FINAL SEASON. I admit to having a love/hate relationship with the show, and can honestly say that if it hadn’t been for the invention of the DVR I probably would have given up on it a long time ago. That fast forward button is what kept me watching (or not watching) through parades of idiots hoping for their fifteen minutes, through Paula, Ellen, and Kara refusing to say anything meaningful, through Randy Jackson, Steven Tyler, Mariah Carey, and Niki Minaj forgetting to speak English, and through the endless vitriol and narcissism that is Simon Cowell.  I can honestly say that the show today is much improved and I am a bit sad to see it go.

I am also thankful that little fast forward button helped see me through til the end, because I think I am witnessing something great this season, and I would have missed it if that little button hadn’t saved me from all the trash that came before.  I can only imagine what you’re thinking of me right now.  Greatness and Reality television are not synonymous by any stretch of the imagination. And music is subjective, so how dare I tell you that these particular singers are “Great”.  But it’s not the talent that is making it great, and its not the game show format.  I’m seeing something unexpected from the land of all that is fake and vapid and cookie cutter.  I’m seeing BRAVERY shine out of the television, and I am surprised and humbled by it.

 Leaving an abusive man is HARD. Being okay with it is even harder. Twenty-five years later I can barely talk about what happened to me; but, LaPorsha,she OWNS her story, she OWNS her strength, and she KNOWS she deserves someone who likes the things about her that she likes: “my hair, and my church, and my singin'”.  On her home visit she told the women at her former shelter that she sang Mary J. Blige’s No More Drama “for us” and I choked up a bit because I heard my name in that “us”.  Even if LaPorsha didn’t have the hair (that glorious hair!) and the voice, she would still be blessed with strength and bravery.  And the crazy thing is, she isn’t the only one!

LaPorsha has been on my radar from the beginning (with that hair, she may be on NORAD’s radar 😉 ) because her story touched my heart. But when they had the artists tell something about how they came to be artists I didn’t fast forward (probably because I was eating) and I heard something that totally shocked me. Dalton (aka Billy Joe Armstrong 20 some years ago) was talking about how as a kid he would “Feel everything so much more than other kids”. He went on to say that at nine years old he was diagnosed with bipolar disorder. I couldn’t believe my ears. I actually hit the REWIND button and listened again. Yep, he said bipolar disorder. Wow. Just, WOW.  That may not sound like a big deal to a neurotypical person,  but admitting that you’re bipolar to anyone, let alone millions of people is incredibly brave. I have still told very few of the people I see every day.  I never told anyone at the job I had for almost six years. I told TWO people in my Master’s program, and only one was a professor and she DID use it against me.   The stigma attached to mental illness is real, and its scary. I have a Masters in counseling, and I will never get hired in this town because everyone knows I’m a client. That’s just life. BUT,    since that sound bite Dalton has talked candidly about his disorder, including a conversation with the artist Sia where she states that she is also bipolar, which is truly amazing and a huge step forward for everyone out there dealing with a mental illness and hiding it. We all need to be as brave as Dalton, and as Sia, if we want the stigma to go away. I aim to try harder. This illness is not something to be embarrassed about: It makes me the person I am as much as my blue eyes and my sweet tooth and my inability to get up early and that’s totally fine.

Just a quick step onto my soap box: Bipolar disorder is a disease that unfairly strikes creative minds. There’s even a book about it: Touched with Fire: Manic-Depressive Illness and the Artistic Temperament  by Kay Redfield Jamison. Entertainers of all kinds have kept this illness a secret and self-medicated with whatever they could get their hands on rather than face the stigma attached to having a mental illness. Far too many brilliant artists have left us too soon, and we wonder why?   Using words like crazy, messed-up, not right, off their rocker, psycho, etc. makes you part of the stigma, and could be keeping someone from seeking help they desperately need.

And because Idol is “pulling out all the stops” for their final season, the brave moments don’t end with Dalton Rappatone.  I have no words for the beauty and pain of Kelly Clarkson’s Piece by Piece, or for how hard it must have been to sing that song, on that stage, while being that pregnant. And hats off to Keith, Harry, and Ryan for being guys who can let real emotion show. Oh, THE FEELS!!!!

 

 

 

 

Awake

I almost missed day one of the A to Z challenge, but since I haven’t gone to sleep yet, I’m calling this good.  And being awake more than usual lately has me concerned, actually, because I think that it is messing with my mood.  I can feel that I am just a bit out of sync, but I can’t quite put my finger on what the problem is.  I’m a little to chatty with people, and I am a bit too rambling in my emails and messages. I THINK mostly only I am noticing it right now, although one of the nurses kind of gave me an odd look today when I got my epidural spinal steroid injection, so I might be talking kind of fast too. And it all comes back to being AWAKE too much, or awake at the wrong times.  Sleep deprivation is a common trigger for a lot of people with mental health issues, and it’s definitely my main trigger.  I think hypomania induced by lack of sleep pretty much describes my time in my Masters program, which wasn’t all bad. I got shit done!!! and for the most part done well, I just crashed really hard after graduation, and it took awhile to bounce back from that crash.  Bigger ups and downs aren’t as catastrophic to my life now that I’m middle aged and maintaining my med regimen all the time. I don’t get fired, or kicked out of places, or flirt with strangers, or drink, so not a lot of risk taking or dangerous behavior anymore.
I think that they’re harder on my overall health though, mentally and physically:  Too much binge eating and avoiding people, too much pain; slow response time, not enough attention span to read a book, forgetting things.  Bipolar in middle age is quieter now than it was in my twenties, but, lying here awake at 3:30AM AWAKE for the I- don’t- know-how-many nights in a row now makes me wonder if quieter is better. This seems somehow more insidious.

Decided I needed more space to answer these questions:

https://wordpress.com/read/post/feed/17080200/711920471/

How has mental illness affected me personally:  I have bipolar disorder, type 2. I also have an ADHD diagnosis. My son has autism, and my daughter has ADHD. So mental illness is the everyday norm around here. My bipolar isn’t the interesting kind that you see on TV with people going off their meds and then becoming a complete wild child. It’s mostly depression where I sleep and eat a lot mixed in with periods of time where I can get a lot done but don’t always have the best judgement. I’ve never heard voices, or ran around naked, or stolen anything.  My first manic episode, and probably most manic thing I’ve ever done, is marry my first husband on a whim. It was a random weekday, he asked, I said sure, two hours later it was done. Impulsivity is a thing I’ve learned to watch for now, but at 21 I had no idea that anything was up. Oddly, I WAS seeing a counselor at this point, and had been for some time, and she never suggested bipolar disorder either, even though when I look back on this time period it seems pretty obvious.
Having a mental illness makes simple things harder for me. I’m easily overwhelmed by tasks that aren’t broken down into small steps. Like housekeeping. I look around and just see the giant mess and don’t know where to start, so I just don’t start because that’s easier (even though I prefer order). Oddly, I manage my children’s issues pretty well, I’m just exhausted by them fairly often. I find that everyday interactions with people are often rather exhausting. But if I’m even a little bit manic the opposite is true. It’s a weird thing, but on a Myers Briggs test I will score as extroverted if I’m a bit manic, and introverted if I’m a bit depressed.
Having a mental illness, and then having my first child be mentally ill as well made me rather reluctant to have a second child. There are eight and a half years between them, and my daughter was honestly quite a surprise. A very good surprise. But pregnancy and bipolar disorder was challenging, because the medications I was on were not safe for the baby, so we had to find something to use to keep things mostly normal. The drug we used wasn’t ideal, I gained way too much weight, but my mood was good without being too good, so overall it was a success. I did not breastfeed, getting back to my meds and avoiding a postpartum crash was just too important.
I can think of many ways my illness has changed my life from what I thought it would be. I studied to be a teacher and a mental health counselor, but I’m not. I’m a stay home mom whose main job these days is chaeuffeur. Sometimes I am frustated by the fact that I have no career, that I am completely dependant on my husband, but most days it’s ok. I’m a big believer in the idea that things work out the way they’re supposed to.

What did I learn from it that might help others:  In my first graduate class the professor made a comment about people with mental illnesses being drawn to the counseling profession, and that it wasn’t appropriate for them to work in the field because they weren’t mentally fit. I was angry about this comment, but I didn’t say anything, and I hid my illness from everyone in my department for the next three years. And that was wrong of me. That professor was wrong to make a blanket statement about “people with mental illnesses” and I let her intimidate me into hiding and I shouldn’t have. Don’t hide your illness because you’re afraid of what people will think. It’s just an illness like diabetes or lupus or arthritis. You take your medication and you go to your therapist, same as anyone with any illness, and you learn to live with it just like anyone else. When you hide it you’re saying it’s ok for people to stigmatize mental illness and it is not ok at all. We are as important and valuable as anyone else. Never be ashamed of your disorder, and never apologize for it. It’s part of what makes you, you.
I have a much easier time saying those things than I do actually acting on them, especially when it comes to my kids. I do find myself apologizing for their behaviour more than I should. It is what makes them unique, and I should be happy just to have healthy, happy children, not apologizing for their lack of perfection.
The one thing that has helped me the most along the way is learning to share that I have an illness. I’ve found that when I have opened up about my own illness I have found a community of others who have similar issues and who were also looking for someone who understood. None of us are alone in this

This just made my day a little

So I am still engaged in an epic battle of wills with my son’s school over what “transition” is supposed to be, and what his education is supposed to be accomplishing at this point. We’re at a bit of a stalemate, because I’ve called for reinforcements and they’re desperately trying to get me sign something before those reinforcements take over. A bit shady, but that’s how the game is played. No one wants to get caught being non-compliant with IDEA.
It’s mentally exhausting. It shouldn’t be, I am not new to the autism spectrum after all, my son is 18. But it’s wearing me down anyway. I guess I thought by this point it would be easier, and I would know where we were headed. But nothing is ever that simple, is it?
Anyway, today I found this piece, and it was uplifting:
I know what causes Autism

A glimpse behind the scenes of our life on the spectrum

So I’ve not been as active here as I’d hoped in this new year, but I realized today that I have been writing a lot, just not here. And I thought rather than explain I would just share the series of emails with you and give you a glimpse into our never-dull world.

From my son’s teacher:

Attached is an updated CAP. It outlines the plan that Dr. Hedges, Mrs. Kaul and I discussed. Please feel free to review it and let me know your thoughts. 
For the most part, Alex is able to exhibit appropriate behaviors when in a 1:1 setting. However, he has had to start again today to work toward 5 days without exhibiting inappropriate behaviors. He flipped Mrs. Braun off because she said she didn’t have time to go to the library to find him another Marvel book until tomorrow. He currently has one in the classroom, but wanted a different one. 
If you have any input regarding the CAP changes, let me know. I would be happy to schedule a meeting to discuss them.  I also discussed with Mrs. Kaul your thoughts on an online curriculum. She and I agree that removing Alex from school would be considered the most restrictive environment, and probably not something that would be appropriate. It would require a team meeting, and the team would need to agree to the placement. Again, let me know and I can schedule the meeting to discuss it.

Thanks

.

CAP stands for Comprehensive Autism Plan, I guess. My son’s looks like the schedule of a convict in solitary confinement. So initially this was my first response to the teacher.

I fail to see how this is any less restrictive than being at home, as he sees no one but staff all day. And, as he is 18 he doesn’t HAVE to be there. This plan does not make me think that the district has anything to offer him, and I think that we need to be working with adult services. 

And then I stewed for awhile and sent this to the SPED director:

Hey! 

I finally opened my email from Nicole and looked at Alex’s CAP plan. I probably shouldn’t have before I went to bed. But I’m not very comfortable with it, it’s essentially in-school suspension all day, every day. Yes, there’s opportunities to work his way out of it, but they’re so gradual that I don’t believe he will even realize that the system is in place. I doubt he remembers on a day to day basis that he IS working toward anything more than a short term reward like computer time or a library book. I’m sorry, but I just don’t believe this setting is appropriate for him, I’m afraid nothing at the high school is. 

You know, we don’t see the kind of behaviors at home that they see at school. He doesn’t hit us, not even Audrey, and she picks on him a lot. He swears occasionally, but not anymore than other teens I know, quite a bit less than some. And his first year at the HS didn’t have near as many behavior issues either, even with all the subs, and with being in some actual classes. I just don’t think this classroom with this teacher will ever be a good fit. Her mostly ABA trained style will never be a good approach for Alex and I think it’s time to move to Adult Services. I was really just being a smart ass when I said that to Nicole about an online curriculum. I know there isn’t one for SPED, and I don’t believe that she could, even if she had time, create one. But I do think Alex deserves better than locked in a room all day. He actually likes people, and IS social when given the opportunity, and this isolation seems rather mean. At least if he were here he’d have some company. Megan doesn’t come back til next month, so I don’t have anyone on this end who can really speak for him except me right now, but I think something has to change. 

Thanks for your help!

Julie

I do try to be politer her to her, things go a bit better when she likes you. But I was still upset. So later I sent this to both of them:

Well now that I can’t sleep and have thought about it some more, I realiaze this plan very closely resembles solitary confinement at a 
correctional facility: He’s down at the end of a secluded hallway, he only sees the “guards”, has scheduled and supervised bathroom and meal breaks, and if he’s good he earns 10 minutes in the “yard” (yeah, it’s the computer, but it’s the same principle). No. Just no. I don’t know what to do yet, but this will not work, it is definitely not OK. I’m keeping him home the rest of the week while I see what my options are.

So this morning I received two emails from the SPED director who is out of town. First this one:

Your right, this is a restrictive plan. However, it is only temporary until Alex can show he is not aggressive to others. His behavior has improved on this type of
of plan. We don’t want him to be isolsted but we also have to keep others safe. I think Alex’s team needs to meet right away. I am back on Friday could we get together? Nicole could you see what Dr. Hedges has available? Thanks

.

To which I sent a rather lengthy response, sorry.

You’re probably right, but I’m terribly under-represented at this point. With Megan gone there’s only me to speak for Alex and I’m afraid that just isn’t enough. I don’t have family support walking me through every step of transition planning like everyone else has had, so I really do need to figure out some things before we get together. And I think I need help.  But I KNOW this is wrong. I know him better than anyone, and he won’t really comprehend a system like this, it’s too long term. He doesn’t use short term/working memory like a typical person. Everything either goes straight to long term or is gone. A plan this drawn out, with incremental steps, is not going to even register with him, he won’t really realize what his goal is supposed to be. Earning computer time, or whatever other reward they use, is going to seem mostly random to him and not getting it is going to be frustrating and cause more behaviors. (You can check the working memory section of his IQ test, it’s the worst section by far.)  
I really believe the environment is a large part of the behavior problem that you are seeing, because we are not seeing it here. We’ve actually seen an improvement in behavior and attitude since we added to his medication, he’s much more cooperative and polite here. Before when there’ve been behaviors at school we’ve had worse behaviors at home, but not this time, which points to environment. He does not fit into that classroom very well. I worried that would happen when he first went to the High School, and I was right. So I don’t know where he fits, or what to do, but this CAP is not ok. 
Sorry to be so difficult, I’ve really tried to play along even though I know he’s not really learning anything, but this plan just seems cruel. Yes, he’s offended people with his language, and hit Jeremy, and Mrs. Olson. But almost every time he’s had one of those behaviors it’s been in a situation I’ve suggested we avoid. I asked for him NOT to be in the room with Jeremy as much as possible, so they’re in the same PE class? I asked several times for a job besides cleaning the cafeteria, because he doesn’t like it and it always leads to behavior problems because he’s with Jeremy again, and in a place he’d rather not be. What else can I do? I’ve offered suggestions, Megan has offered suggestions, they’re disregarded and then there are behaviors. I don’t foresee a change, and  I can’t in good conscience accept this plan, so I feel very stuck. I will see what I can find out about transition planning from other sources this week and then talk about a meeting. For now, I’m keeping Alex home. I do not feel right sending him there under those conditions, I just can’t do that to him. I hope you understand. 
Thanks!

Julie 

She sent me another request for a meeting later that morning and here’s my response: 

I don’t want to meet with Nicole. I don’t want to be in the same room with her. I have tried the “let’s get together and make a plan” approach in the past. Megan and I went in to parent teacher conferences last year with a list of suggesstions for what works with Alex, and things to avoid (like Jeremy) and she said oh sure, we can make that work, and then basically did everything exactly the opposite of what we discussed. Our current situation did not have to happen, she was given a lot of tips on how avoid these behaviors. She just didn’t want to avoid them, she wanted to CORRECT them. And now here we are. ABA is not a philosophy I believe in, and it’s not actually all that supported by research either, so why it is being used in a classroom is something for you to figure out. 
I stayed on board last year because she promised that voc rehab and adult services would be at our IEP meeting last winter to talk about transition;  instead it was just another CAP plan meeting showing me how they’re following the plan. I have a Master’s degree, I can read the damn plan.
What I can’t do, because I have ZERO information, is make any kind of transition out of High school plan for Alex by myself. So, I made an appointment with rehab services for him next Tuesday, and I applied for Family Support 360, and I asked Advocacy to look over his CAP plan. (I don’t like involving them, it feels adversarial, and in theory we should all be on Alex’s team.) 

 I am done sitting down in a room with Nicole so she can say one thing to look good to you and then turn around and do whatever she pleases. I’m sorry if that is disrespectful, but our experience at the high school has just gotten worse each year, and I am frustrated and angry and quite frankly, done. I appreciate that you have listened to me, and tried to help, and really been very pleasant! But, I do not see a way for Alex to go back to that room and acheive any kind of success. 

Thanks! 

Julie

So that’s where I left it. I know I probably sound kind of winy, or demanding. But the whole goal of school from 18 to 21 is supposed to be job and life skills, and I fail to see how he’s gettng those isolated in a room with one staff member all day.

So I HAVE been writing, just not anything fun. Hopefully that will change soon!

Is Crime Relative?

 

Another post that really made me think. This is a blog that I stumbled on to back in November, and now read pretty regularly. The author and I see the world very similarly I think.

Is Crime Relative?.