Wednesday, March 27, 2013

Christmas Ornaments and Nazi Whorehouses, Redemption Part 2

(The last entry, Part 1, was seriously exhausting to my little brain. 
So most of this one is other people's words)

(No profound insights in Part 2, if in fact
there were any in Part 1. Mostly quotes.
I will share that there is a ... physical and  mental 
health crisis for a family member (not Matt or boys) that is
currently occupying a lot of brain-space). 

[[  Part 2  ]]

I love thinking about the various forms of redeem, redemption, etc. In a recent phone conversation, my maternal aunt shared with me a letter her father had written to her mother from France, during World War 2. My grandfather (Loyce, he died before I was born) wrote that his unit was being housed at some chateau (which, he explained, "means castle" :), that before the American soldiers were there,  had been used by the Nazis as a whorehouse. The kiddos were listening when I related this story to Matt so I used the phrase "house of ill repute" though I followed it with clarification that my Grandpa Loyce had likely never used that term, he just used the, ah, colloquialism. Which is probably not a word he knew either.

Monday, March 25, 2013

Ice T is my Co-Pilot [Redemption, Part One]

(Okay, so this is actually the 100th post but it was an honest mistake - 
there were a couple of "drafts" clogging up the count)

[[ Part 1 ]]

Last weekend Matt & I sent the boys to their grandparents' for a night, so we could enjoy a kid-free night. On the way home from the meeting point, we listened to Ed Kilbourne's CD Promised Land; Kilbourne describes himself as a "folk theologian." Matt had purchased the CD just a few days before, after hearing Kilbourne perform at a clergy retreat he attended (not "perform" like a big concert, just to the folks in the room). Some of the songs are kind of ... sentimental (I was going to say "sappy" but Matt as always says it better) ... but others are fairly humorous, poking fun at aging and 'kids do the darndest things' situations. Then there's one song, "Promised Land," that is amazing. I hesitate to use the word "powerful" to describe it because that's so cliched, but I was slightly in tears when it was over.

The first verse of the song describes the life and death (from AIDS) of a young gay man, phrased as a query to God, does God care when gay men and lesbians are beaten and killed and lonely and die horrible deaths from AIDS, in the framework of the strong belief that sexual orientation is inborn, not chosen, and if you're born that way then obviously God makes you that way and does he worry about what he's created? Matt said Ed explained later this verse is about someone he knew, his young daughters' gymnastics instructor.

Saturday, March 23, 2013

Pigs and Guns and Knocking out Down Syndrome

This past Monday was David's Transition Meeting with the county school system, to write his first IEP for his transition from Early Intervention to the school system when he reaches age 3, next Thursday. I have attended a number of IEP meetings as a social worker, and most of those meetings were about teenagers with behavioral issues in addition to their learning disability, and none of those meetings were as positive as this one. David's EI speech therapist and case manager were there, as well as the speech therapist, psychologist, and special educator from the school system. The special educator will take on the same kind of general role that his Community-Based Rehabilitation Specialist has had under EI - she will basically just play with him, doing some motor skills development, some speech therapy, a little bit of everything. We discussed the outcome of everyone's evaluations, and spent a lot of time on general David Admiration and Adoration.

Thursday, March 21, 2013

100 - 100 - 100 - 100 - 100 - 100 - 100 - 100

This is my 100th post and it's going to be awesome. This blog was pretty slow to get started, slow to grow, mostly because I was slow to actually use it and was clueless about any ways to really promote it. But in the past 6 months I've gotten as many page views as in the previous 12 months combined, so I guess it's starting to get out there.

Thanks so much to everyone who has read this page, either faithfully, occasionally, or if this is your first visit. I have been reviewing my first blog-type entries, on David's CaringBridge page. The first few entries were written in May of 2010, when David had been really critically ill with back-to-back infections in the NICU. There was one night in particular that we were convinced he was not going to live. Then came the open-heart surgery and the really difficult few months that followed. And holy smokes, here he is now: he will turn 3 in one week, he's 32" tall and weighs about 25 lbs. He knows some signs and a few words, all his medical conditions are stable/managed, and he's doing beautifully in full-day daycare.

 

 



Wednesday, March 20, 2013

Okay that's enough of that

Last week I had a mini-freakout after discovering this blog: LisaMorguess, and reading some of her ... blistering ... reviews of other books by parents of kids with Down syndrome, most notably Bloom and A Good and Perfect Gift. I hated to criticize the entire blog without reading more of it, so I only freaked out about the book reviews, and admitted my perspective was skewed as the possible future recipient of one of these reviews.

Friday, March 15, 2013

Various Photo Updates

I think Simon's using David's
foot to push out his loose tooth?
They were so much fun,
wrestling and snuggling. :)

Wednesday, March 13, 2013

Eek.

I am suddenly terrified about writing this book. In my Internet search for ideas for my presentation to Simon's class on World Down Syndrome Day, I came across this blog (which contained notes/photos/info from her own presentation to an elementary-school class). I just found it and I'm compelled to keep reading it because her short "About Me" section says:  "I'm a wife and a mother to seven kids. I'm a reader, a writer, and an advocate, a woman, a feminist, and an atheist. What you see is what you get: no bullshit." 

And, I may be hoping she never hears about my book. You know, once it's written. And published. And people read it. You know what I mean, right?

Her review of Kelle Hampton's Bloom.

Her review of Amy Julia Becker's A Good and Perfect Gift.

Friday, March 8, 2013

I Am Not Ashamed but Maybe You Should Be, Part 4


For the original "I Am Not Ashamed" post, click here. For Part 2 and Part 3 ... well, you get it. 

I am breaking my Lenten discipline of not doing any politically-oriented posts, which tend to raise my blood pressure, during this holy period. Shoot.

I recently discovered zazzle.com, a website that's a lot like cafepress.com and I'm sure plenty of other sites, where you can order the same theme in multiple forms. For example, if you want to promote the notion of "Save the Earth" you can get t-shirts, hoodies, coffee mugs, magnets, bumper stickers, etc. I eventually linked to the site from something on Pinterest, and I have ordered a birthday present for David (a cartoon drawing of a stitched-up heart and the motto "Chicks dig scars") and a couple of packs of Down syndrome yellow/blue butterfly stickers to hand out to Simon's class when David and I do our presentation on WDSD. 

I don't blame the site, per se, for also selling these; freedom of speech and everything. But I really wish I had not come across this onesie while looking in the "Kids" section for a possible gift for Simon.

Holy crap. On.a.baby. Nice.

They also had these (and a million more, if you want to see, click here). I did not cancel my order, because (a) I need a cheap, quickly-delivered giveaway for 3/21, and (b) the heart surgery shirt is really freaking cool. But perhaps I will forward this post and the other "I Am Not Ashamed"s to them.

My message about the following images is the same as the other posts: If you know someone (a specific person) who is defrauding the government by having forged identification or other documents to obtain "welfare" benefits, please forward their name and address to your county Department of Social Services or DYFS or whatever it might be in your state. If you wish to change the program guidelines in order to "make""These People""work," I suggest that you write to your state and national congresspeople, who are the ones who would be in a better position to help change everything to exactly the way you feel it should be. And may God have mercy on your soul and bless you always and forever, such that you will never lose a job and run through your savings or lose your health insurance or experience a natural disaster or any of those other things that happen to ... people. And if you pull yourself through all these issues without a dime of government assistance, then God bless you as well. Congratulations on your iron will and work ethic. But please remember that does not do one single thing for you in God's eyes? Remember how Jesus commanded his disciples to take everything they had and give it to the poor, and I have yet to read anywhere in the Gospels that he put a lot of stipulations on which poor people would get it. Remember the admonition to be humble.

And if you are frustrated, that's okay. I get it. I just ask that if you are angry because you feel your hard-earned dollars are being given to people whom you perceive to be able to work to support themselves, the for the love of God, SAY THAT INSTEAD. Thank you. 

This has been an exceptionally frustrating process for me, but I continue to bump up against it (this time while ordering a t-shirt celebrating my son's successful open-heart surgery, mind you), and I can't let it go. I just want folks to ... not be mean. Is that so hard? I personally would rather hang out all day with an auditorium full of "welfare" and "Food Stamp" recipients, convicted criminals, undocumented workers, etc., than spend ten minutes with a mean asshole that finds stuff like this hilarious. 

Oh, the self-satisfaction. Whoever you are, can you please
give me one of your business cards so that each month when I get
"my check" (you know it's not a check anymore, right?)
I can write you a personal letter of appreciation?


Oh wait, I don't get a check. My kids get Medicaid and WIC.
But that's not the point.

(FYI: the terms "welfare" and "Food Stamps" are technically dead.
For many years now, the actual terms are TANF, Temporary Assistance to
Needy Families, and SNAP, Supplemental Nutrition Assistance Program.
If you're going to hate something at least call it the right thing)
***********************************************
This one has been another big one on facebook.
There is a concept out there which lots of folks do not
seem to be
 acquainted with, the notion that
"Two things sometimes appear to be the same thing,
but if you take about 2 seconds to look closely
you find out they are not in fact the same thing."
********************************************************************
Again, thanks to you, Almighty American Worker, savior of the world
(oh wait, that was Jesus), let me humbly prostrate myself
before you and give you personalized, individual thanks for all
your efforts on behalf of my children and me. 
*********************************************************************


 This is the most decidedly un-Christian sentiment I have heard in quite some time. Good luck, dude or dudette that considers this amusing; hope you are never alone and scared
 and you know, poor, in a foreign country that does not utilize your language of origin.
My tip would be to be born in America and say a lot of prayers anytime
you step foot outside the country. Otherwise I guess you are screwed.
 

*******************************************************

Ah, pregnant adolescents. Aren't you proud of yourself 
for this, distancing yourself from ... children ?  
And as a self-appointed member of the
Punctuation Squad, I'm calling you out
on the "mom's" thing. 
********************************************

If you are also a fan of the WWJD bumper stickers,
 I would suggest pasting one of those over this. ******************************************

You can guess my issue with this one, right?
While the delightful phrase "baby daddy"
has unfortunately become ubiquitous 
across cultures, to me this is pretty
explicitly racist. 
******************************************************************
Ah, compulsory sterilization.
That's always a step forward.
Nice. 


Wednesday, March 6, 2013

Spread the Word to End the Word

Today (3/6) is Spread the Word to End the Word day, please check out the r-word site for more information. Please think twice before using the word "retard" or "retarded" in a derogatory way, and please don't allow your children to use it either. I know most people use it more or less thoughtlessly, and probably most would never say anything else disparaging about someone with a disability, but IT STILL HURTS. A LOT. It hurts me, it will hurt my son and his brother when they are old enough to hear it and understand how it's being used.

Tuesday, March 5, 2013

Follow-up to Yesterday

Thanks so much to everyone who read yesterday's post, especially those who offered support and encouragement afterward. I realize it was likely difficult to read; it's one of the more personal ones, and it was all so long ago (at least, the stuff about my Mom). 

I have been doing a lot of writing the last few days, and checking old entries from Facebook and David's CaringBridge site. I haven't written on CaringBridge for almost a year, but it's still active. If for some reason you are looking for more ancient info, click here. This was the beginning of my social-media-type writing, and the positive feedback I got on my writing is what encouraged me to think I could actually write a book. Oh, and we got lots of support from friends, family, and church members who checked it regularly.

It has been great to review all these old entries - lots of little details I haven't thought about for a long time. It's amazing to be reminded how far the little guy has come.

Monday, March 4, 2013

Joanna Shares Some Feelings, Part 4

(Pretty sure it's Part 4. I think.)

[[[ PART 4-1 ]]]  I have felt slightly out of sorts lately, not really on top of things. I'm planning to talk with my family doctor about the dosage on my Adderall - I'm not noticing as much of a difference between when I take it and when I don't, as I used to. I think I remember when he started me on it (A year and a half ago? Is that possible?) he said this would happen at some point - it's a stimulant, so I'll need more. Matt's worried this means I'll have more increases in the future, so I'll ask about that too.


Matt and I had a discussion a few weeks ago, during a long car ride. He's read a lot from the Driven to Distraction book our pediatrician recommended when she diagnosed Simon with ADHD, and a fair amount of the book is dedicated to adults with ADD; there's an entire chapter about marriage and what both the "ADD partner" and the "non-ADD partner" might experience. Matt reminisced about the early days of our relationship, when he loved hearing from me, "I have a plan." I thought about this for a few minutes, and offered the following thoughts (stay with me, this may make little to no sense to anyone but me):

  • Matt and I met a little less than a year after I finished graduate school. In both undergrad and grad school, I was pretty driven/ambitious and highly organized, with a plan and an outline for just about everything.
  • This probably served Matt pretty well at the time - he was about a year out of undergrad and was not really sure what he was going to do with himself, so meeting up with someone at the beginning of a career and lots of plans for everything may have been helpful for him. So, he would likely remember it as a positive thing.
  • This goes along with what the neuropsychologist said when she diagnosed with ADD, that to be as successful as I was in school, I probably had to work much harder than I otherwise would have, if not for the TBI. It took her bringing it to my attention to make me see how much work I put into making lists and plans for everything - she said I'd probably been doing it so long I didn't even notice it or think anything of it. However:
  • My job in Washington DC (child welfare social worker) was about as exceptionally stressful as one might imagine, and I went for a few sessions with a therapist at the Employee Assistance Program. She was great - very supportive and helped me realize how much pressure I was putting myself under, and how I was trying to make the same organization methods and perfectionistic tendencies from school apply to the current job (and I guess I'd done the same at other jobs). She helped me to see/understand that hey, work is not the same as school. You may be thinking, well, obviously, but it was not obvious to me. 
  • My previous jobs likely had been more like school; I was the only social worker on a psychiatric unit at a hospital, and then a case manager at a county health department. In both jobs I was fairly independent; in charge of my own duties and workload and while I made plenty of referrals in each setting, it was different. The child welfare job depending on so much interaction among various levels of services, red tape and people, especially the cases that were involved in the Family Court system and you had to explain everything you did to a dozen different people and the interplay among families, schools, law enforcement, social services, and mental health services was so complex it really defies description. So, I had way less control over things (to the extent I had previously deluded myself into thinking I had lots of control at the other jobs), though I and plenty of other folks (like the attorneys) were more than happy to let me assume responsibility for everything. 
  • So anyway, I explained to Matt during this conversation, I may have let the pendulum swing too far in the other direction. Again, the dosage on my Adderall may have something to do with this, because I felt pretty hyper-organized when I first started it. But I would agree that here lately, it is hard for me to do much in a timely manner, or in some instances what seems to Matt like a timely manner. :) It takes forever for me to make a simple phone call, or accomplish relatively simple tasks, because I don't devote as much time to thinking about what it will take to actually finish each thing, and I'm easily derailed when I don't have something I need. 
  • Yeah, Adderall. 
  • I tried for a long time to be a much more laid-back, peaceful, go-with-the-flow type of person than I finally concluded I actually am.
[[[ PART 4-2 ]]]  Along with the distraction is a mild, but definite melancholy here lately. I think it started a couple of weeks ago when I took Simon to visit my undergrad campus, which is about 30 minutes away. I've taken him for several visits and he loves seeing the "college kids." I usually enjoy taking him, and talking about what things were like when I was a student. This time we were sitting on a couch in the University Center ("UC," I think I went in there once when I was a student but it looks a lot better now), and for some reason I chose to tell him that although I liked going to school here, I was often lonely and sad, especially after "Grandma Jean" - my mom - died when I was a sophomore. It turned out to be a good thing to share, because he asked if I ever felt shy when I went to a new class for the first time. This is about the move we have to make this summer, so I acknowledged that often I was shy and nervous at first, but that everyone was nice and pretty soon I made friends. That is a much rosier picture than the experience I actually recall, but what else are you going to say to a 5 y.o., when you want him to get on board with the plan?

Since that day I've been thinking a lot about another emotion that predominated, though I didn't realize it for a long time, at that time. Anger. This was after my mom died, and of course I know the Kubler-Ross death/dying Denial Anger Bargaining Depression Acceptance thing by heart. And I know that anger is generally secondary to grief, fear, etc. I have not really ever thought about the way in which I grieved this loss; at the time I totally acknowledged all the primary emotions but never got around to directly expressing the anger. Most of my classmates and other friends knew about my mom's death, and I would say to them that it was tough, or some other general statement that put out there that I was not doing the Denial thing. I never really talked to anyone else about it, not in any depth. I even saw a guy at the student counseling center for awhile and I remember talking a lot about the grief and sadness, but not a whole lot else. Of course that doesn't mean we didn't talk about it, but I don't remember it.

The other thing I think I did was to be sad for awhile, then sort of think I was concentrating on class or homework for a bit, then flip the sadness switch on and off again later. Does that make any sense? I would acknowledge the loss for awhile, like in the afternoon, and it's not that I would have denied it if you'd asked me about any other time that day, but I just didn't realize or acknowledge how all-encompassing, all-permeating (is that even a term?) it was. And of course you never realize it all at the time, it's only later looking back, but it's simply odd to me as a mental health person that I haven't really thought about the process that much since it happened. And I suppose doing it the way I did helped me accomplish my main goal at the time, which was outstanding academic achievement. I talked to the counselor some, and I talked to some other humans some, but otherwise I buried myself in work, with the idea that I had to go even more above-and-beyond than I had previously in order to make my (dead) mom proud of me, when I knew full well, even at the time, that my mom would not have cared less whether I graduated summa cum laude or not. So why am I talking about all this right now?

Since that last visit to campus, I've been thinking back to a couple of years ago, when I read through a bunch of my journals from those days. I was surprised to find all the anger there, but again never about the loss, which I'm assuming now is what was behind it. It was always directed at other people, and especially whatever guy I was with at the time. I never felt happy or secure in any relationship for more than a day or so, and my neurosis about "Is he going to call? When is he going to call?" went way beyond any normal insecurity. The worst thing I discovered was all the time and thought I devoted to wanting to hurt other people - whenever I felt mistreated in the slightest, my reflex was to lash out/strike back. Not physically; I suppose I wanted them to feel really bad/sad/guilty/ashamed, and I suppose the logical extension of that is, I wanted them to hurt as much as I was hurting. "Some" of just about any emotion is expected after a loss of this magnitude, but ... it was way more than "some."

If you are wondering, I'm not beating myself up too much currently about this whole thing; I was only 20 when my mom died and I think of college as a great time to not know what the hell you are doing, most of the time. It's more that I'm ... interested in examining the process, in a slightly-but-not-too-much detached way.  

So what was I so angry about? Who was I angry at?

(1) My dad, who in his profound grief and loneliness got engaged to someone else less than a year after my mom died. I really hated her and they eventually broke up, thank goodness. Even at that time, I was able to recognize my dad's loneliness and need for companionship, but it wasn't enough to overcome my own feelings about it.

(2) The rest of my immediate family, which would be my older brother and younger sister, because we were all in different places and we weren't really talking about it and we were all dealing with it in our own way but there was never a good, real talk about it. I was at my college, my sister was a freshman at hers, my brother was married with a kid and my dad was all alone and we were falling apart. My exact thought is, if it had been my dad who died, my mom would've held us all together. She would've made sure everything was okay, that we were all doing okay and our family still existed for more than Thanksgiving dinner.

(3) My mom, I guess, for (a) leaving me/us, and (b) leaving us in this mess.

(4) It's common to be mad at God or whatever your higher power might be, and I supposed I never expressed or even let myself think about that too much because logically I looked at it as irrational and a waste of time - it happened, there was nothing that could've been done to prevent it (brain aneurysm), God didn't "make" it happen so why even talk about it? Logic still rules a lot of my thought these days (again, not the free spirit I would've once wanted to be), but back then it was about the only way I knew how to do anything.

(5) My dad my dad my dad my dad - he was the parent, he was supposed to either prevent this from happening or make it less terrible, he was supposed to check on us and us real questions about how we were doing. This even though we were all adults now and none of us lived at home and I tended to push him away because of some other issues in the past - we needed a parent and Mom was gone and Dad wasn't stepping up and he should have made everything okay, dammit, because he's the parent.

(6) I was lonely and sad and I felt completely untethered to the world - I felt like a balloon someone had snipped the string to and I was just floating off into space by myself and nobody knew and nobody cared and I was all by myself. I felt as if my Mom was not only my main cheerleader but my only cheerleader, that I didn't really matter to anyone else in the world, not really. 

That last one made me cry to type it, though I've made that exact 'balloon' image in my head before with no real problems. 

Maybe that's why I never thought about all this being connected before, huh? Difficult, yes. 

Once again, not judging myself too harshly on any of these thoughts, either the ones now or the ones then, but it is painful to think about all of this at the same time. Writing this out, though, with the idea of sharing it with other people, is forcing me to think about it in a different way, to organize it a little differently in my brain, is helpful.

I'd also never linked the loss and resulting anger to an overall feeling of helplessness and powerlessness, along with a complete inability to deal with or express the anger in any productive way. Not that I'm alone in "not being able to deal effectively with anger." It's more that I'm not sure I'm much better at it now than I was then, even knowing and verbalizing/acknowledging all the other crap that comes tied up with the anger. The anger and powerlessness fed each other in this unending loop of being able to write or say anything that made the anger mean anything to anyone else

... As a social worker who has worked with a lot of teenage girls, I have heard the term "self-esteem" so much that I almost laugh out loud when I hear it now. The general concept is okay, it just gets generalized as the reason why girls do anything. And as I read somewhere, sometime, prisons are full of guys with great self-esteem, who hold themselves in plenty high regard. "Plenty high regard," did I really just say that?

... I prefer the idea of self-efficacy, the idea that you are in control of your life, and what you do and say makes a difference in your life and in the world. Not so much that you think you are fat because of the models in the Sports Illustrated Swimsuit Issue, but more that you are capable of determining what is really important/relevant in your life, what your goals are, and your ability to make changes in your life and in the systems that surround you in order to meet your goals. And, the ability to sort out the things over which you do not have control - you don't have to feel good about them, you just have to recognize your own limitations and work within them.

[[[ CONCLUSION ]]] The family stuff (with Dad and sibs) has more or less straightened itself out over the years, and the family system has survived more or less intact. I have gone on to establish a pretty good life, with a beautiful family and a career I love, though each job setting is a lot easier to look back on and love once I've been out of it for a year or so. Mood issues are variable; there is other, ah, pharmaceutical assistance than the Adderall so maybe those can be looked at too. Things are generally cool; I think this piece was something I needed to write in order to understand it better myself. This is not tied up as neatly as I would've like, but for goodness' sake I need to do other things. If you've hung in here until this point, thank you and may God bless you. You are awesome.