Up and Down Day

Well, today started out quite good mood-wise, but later in the day either the sleep deprivation from the night before or the trip to IKEA put me in a foul mood. I'm excited about all the cool things our new house will have. But IKEA is an environment designed to make me feel helpless and furious. There are so many turns and there are no visible landmarks by which to navigate. There's something nightmarish about the place. Even when I'm not depressed, I can't handle that place for more than about 20 minutes. I do like the stuff they have. I just wish they'd make it a more pleasant environment.

I think I'm very sensitive to sleep deprivation now and if at all possible should try to take a nap on days when Quinn steals my rest.

One thing that's annoying about this depression stuff is that I'm constantly obsessing about my emotional state and not about what I'm doing. I imagine that this could get boring for my readers very quickly.

I'm supposed to stay on my current 50mg daily dose of Sertraline for another week and a half. Then I can up it to 75mg. I think I might. Right now, I'm usually "OK", but my "OK" seems very fragile. I need a more robust OK if I'm going to make enough changes to get out of this.

Eventually, of course, I want be much better than just "OK". I want to be happy. I was very happy as a child, actually. I know I can be a whole lot happier than I am now, certainly. But right now, I'm just trying to get to OK.

Back on track

I seem to have recovered somewhat my emotional equilibrium. This is a great relief. I'm not sure if it was Dungeons & Dragons night, or getting more sleep, or refraining entirely from alcohol, or just a momentary blip. I hope I don't suffer further relapses. That really sucked.

Now if I could just get rid of this post-nasal drip and cough that has been plaguing me for several weeks...

A rose for my yummy

I was over at the new house today and I brought back a rose for Sarah.
It's on her desk and I already emailed her the picture. But I thought
I'd post it here so all our readers know how much I love her.

Enchanted walks

Lately I've been enjoying some enchanted walks with Quinn. He is in love with the world, and with his relatively newfound pointing abilities and characteristically adorable "Uhhhhh!" exclamations, he encourages me to love it, too.

Trucks! Buses! Dogs! The BART Train! Flowers! Other Kids!

I'm trying to walk with him more lately. Good for my waistline and my soul.

I hope LSFX readers don't mind the change in tone between Zac's posts and mine. I'm keeping an eye on him, as best as I can.

What the hell happened?

Yesterday, it seemed like the Sertraline stopped working, and I feel like I'm swimming through lead again. I'm tired, cranky, muttering under my breath. It's like somebody turned off a switch. It sucks royally. I can barely keep up a crude semblance of normalcy.

Losing it

For some reason, tonight things are not working for me. I've been anxious since about 4pm. It's like I'm not on drugs at all. Quinn was crying and I am feeling just as frustrated, just as helpless, just as angry as before the Sertraline. I don't know what is going on. I just want him to SHUT UP SHUT UP SHUT UP.

OK, A little Facebook surfing has calmed me down. Now to try to get to sleep. I hope to God he's stopped crying.

Happy Father's Day!

Happy Father's Day! Here is a picture of Zac and Quinn when the little guy was just about one month old. Zac is a wonderful, committed, fun father and I love being a parent with him.

Another fairyland pic

Quinn at Children's Fairyland in Oakland

Life on Sertraline (generic Zoloft)

UPDATE: I think Sertraline may be turning me into...a morning person. AAAAAHHHHH! THAT'S SO WEIRD!!!!

Thought I'd give an update on my status here:

• It seems to be working, in that I'm less depressed and have more energy. Things still can annoy me, but they usually don't send me into a rage or a funk.
  
• The drug alone doesn't give me a rush anymore, but it increases the effect of caffeine I take via coffee or tea.
  
• I don't seem to be any more or less diligent in doing work/chores: I'm my usual self. I can get necessary things done, but unstructured, open-ended or unpleasant things are still subject to distraction or procrastination. I probably get a bit more done overall because I'm less anxious about things.
• Alcohol affects me more: I had a few sips of wine at the wedding I officiated at on Sunday and I could feel even that.
• Sleep deprivation: Quinn has been sleeping a bit better (with the help of some Benadryl, which our pediatrician has allowed us to use), but Monday night was bad. I was fine in the wee morning hours and in the morning, but the sleep deprivation hit me very hard in the afternoon. I became cranky and forgetful. It makes me wonder how much of my improvement is from the drug and how much is from better sleep. I think my sensitivity to sleep deprivation has increased. Whether that's from the drug or from being less used to sleep deprivation I don't know. But I think it's the former.
  
• My performance on the brain games at lumosity.com has gone up considerably, though it was already pretty good. Subjectively, I don't feel any smarter or more cognitively capable.
• I've been on it for 2 weeks now, first 6 days at 25 mg and 50 mg on the following days.
  

All of the budget cuts were passed today

Sorry to be taking up a lot of space on LSFX with California budget stuff, but here is the latest sad update in the saga, as presented in a message by the president of the Arc California (http://www.arccalifornia.org)

As a parent, I must take strong exception to our elected legislators' decision today to ignore the will of the people of the State of California by decimating the Lanterman Act. We must let them know that this will not be forgotten when we next go to the polls.

The 10 members of the Legislature's budget conference committee late today (Monday) caved in without discussion to Governor Schwarzenegger's devastatingly destructive cuts in the support system for people with developmental disabilities and their families.

The six Democrats and four Republican legislators voted 10-0 to accept all of the cuts recommended by Schwarzenegger's Department of Developmental Services.

Virtually every Californian with a developmental disability will be hurt. For thousands of people, this very likely will mean the end of the Lanterman Act's promise of the most appropriate supports for people with DD. Some children who are at a very high risk for disabilities will end up with permanent disabilities even though preventable through early intervention.

We're working on a summary of these cuts. Please check www.ArcCalifornia.com soon.

This catastrophe wasn't necessary. The Arc and other community groups relentlessly presented alternatives that would have saved the state just as much money without these terrible results. In the end, Governor Schwarzenegger and these 10 legislators ignored us.

Our community must respond promptly and strongly. Please call Governor Schwarzenegger and the 10 legislators immediately and express your strong disappointment, even outrage if that's what you feel. Their numbers are at the bottom of this Action Alert.

We are especially disappointed in those we've always seen as our friends, beginning with Governor Schwarzenegger, a supporter of the Special Olympics and the son-in-law of disability champion Eunice Kennedy Shriver. His Department of Developmental Services proposed more cuts than necessary to meet the dollar goals Governor Schwarzenegger ordered them to meet, and they brushed off too many of our alternatives. Intentionally or not, the department misled the 10 legislators into believing that the community "stakeholders" supported these cuts.

And the legislators allowed themselves to be misled. Our groups' professional advocates in Sacramento clearly and repeatedly, as recently as this morning, let the legislators' staff members know that these cuts were the Schwarzenegger administration's proposals, not ours, and that we have concrete alternatives. Hundreds of people testified at three separate hearings with some of these 10 legislators present. Thousands called, emailed and faxed letters to all 10 of them.

The 10 legislators also accepted the department's dismissal of our alternatives without even giving us a chance to respond.

For us, the cruelest betrayal was by legislators who have been our friends, who have visited our service programs, spoken at our conferences and meetings,supported some of our bills in the past, listened respectfully to our testimony, and even spoken about how Governor Schwarzenegger's proposed cuts were too much.

Assemblywoman Noreen Evans, the committee chair, had said all the harmful cuts that Governor Schwarzenegger proposed should at least be temporary, yet she ignored our repeated urgent appeals to make any cuts in the DD support system temporary. We had let Ms. Evans know that the department was flatly wrong when it said or implied that the "stakeholder" groups supported some of the cuts, yet today she said that they were "developed by the stakeholder groups."

Senator Mark Leno had told an earlier public hearing that the amount Governor Schwarzenegger proposed to cut was too much, yet today he voted for it. He had seriously questioned the department's proposals to shift much of the decision-making power over the IPPs from the IPP teams to the regional centers, yet today he didn't say a word as the committee adopted them.

Assemblyman Robert Blumenfield, Assemblyman Kevin de Leon, Senator Denise Ducheny, and Senator Alan Lowenthal, all people we have considered our good friends, were silent -- and all voted for the cuts.

Senator Robert Dutton, Senator Mimi Walters, Assemblyman Jim Nielsen, and Assemblyman Roger Nielloalso all went along with all the cuts.

Please call them all and tell them what you think of their votes today.

• Don't be shy. Our community's future rests on politicians learning that attacking our vulnerable people has consequences. Speak your mind, even if your voice shakes.
• Don't be deterred if they have represented you well in the past. They didn't represent you today.
• Don't be bothered if you know and like them. This isn't personal, it's about what's right for people with DD and their families. Friends tell friends when they feel betrayed.

Depending on how much well-deserved criticism they receive in the next few days, there may be some chance to reverse some of the worst cuts, or at least make them temporary. Without a community response, there's no chance, and little chance our community will be able to stand up to more assaults in the future.

The department's next "stakeholder" meeting on the bill language is tomorrow. We and the other groups will be there fighting for our community. It's time once again for you to speak out and hold your representatives accountable.

Please phone all 11 if you're able. Calls have more impact. The email addresses are for people who can't call. The fax numbers are for faxing letters on your group's letterhead.

If you live in the district represented by any of the 10 legislators, start by giving them your name and address so they know you're their constituent. If you're a member of the same party as theirs, say so. Resist any temptation to lie; they can check easily.

All of their phone numbers are in the 916 area code.

• Governor Arnold Schwarzenegger, 445-2841, 558-3160 (fax), email using the web form atwww.ArcCalifornia.org, "Write Your Legislators."
• Assemblywoman Noreen Evans, 319-2007, 319-2107 (fax), assemblymember.evans@assembly.ca.gov
• Senator Denise Ducheny, 651-4040, 327-3522 (fax), senator.ducheny@sen.ca.gov
• Senator Robert Dutton, 651-4031, 327-2272 (fax), senator.dutton@sen.ca.gov
• Senator Mark Leno, 651-4003, 445-4722 (fax), senator.leno@sen.ca.gov
• Senator Alan Lowenthal, 651-4027, 327-9113 (fax), senator.lowenthal@sen.ca.gov
• Senator Mimi Walters, 651-4033, 445-9754 (fax), senator.walters@sen.ca.gov
• Assemblyman Roger Niello, 916-319-2005, 319-2105 (fax), assemblymember.niello@assembly.ca.gov
• Assemblyman Kevin de Leon, 319-2045, 319-2145 (fax), assemblymember.deleon@assembly.ca.gov
• Assemblyman Bob Blumenfield, 319-2040, 319-2140 (fax), assemblymember.blumenfield@assembly.ca.gov
• Assemblyman Jim Nielsen, 319-2002, 319-2102 (fax), assemblymember.nielsen@assembly.ca.gov

Please call all 11 of them now. And please forward this Action Alert far and wide.

Dwight Stratton

President

The Arc of California

It's not too late to take action to stop more cuts in services to people with developmental disabilities in California

From a letter by Greg DeGiere of the ARC California:

Dear Friends:

The Department of Developmental Services on Friday gave the Legislature new recommendations that we view as the end of the Lanterman Act's promise to choose the most appropriate support for each person with a developmental disability and their family.

The Legislature's budget conference committee will consider the department's harmful recommendations today (Monday), probably in the afternoon. As of now, it looks like they will adopt them.

All 10 committee members need to know that you are watching.

Please call now -- it's too late for letters or emails. If you're calling your own state senator of assemblymember and have talked to anyone in his or her office before, call that staff person again now. Otherwise, call and talk to any staff person you can get on the phone. Ask them:

Don't cut any more services for people with development disabilities! The Department of Developmental Services' "trailer bill language" (that's the jargon term to use) would have the effect of ending the promise of the Lanterman Act for thousands of Californians.

Instead, take a few more days and actually consider community alternatives from The Arc and other groups.

If you are calling your own state senator or assemblymember, ask how your representative plans to vote. If the staff person doesn't know, ask them to find out, and tell them you will call back later to follow up. Get their name, and call back later on Monday morning.

Coordinated grassroots and Capitol advocacy for people with Developmental Disabilities and their families has actually won a few victories in the state budget war so far, but we will lose the biggest battle unless we can stop this disaster today.

Please call now.

Is that stark and clear enough for everyone?

Greg

Here are the budget conference committee members and the numbers to call:

Assemblywoman Noreen Evans, 916-319-2007

Senator Denise Ducheny, 916-651-4040

Assemblyman Bob Blumenfield, 818-904-3840

Senator Mark Leno, 916-651-4003

Senator Alan Lowenthal, 916-651-4027

Assemblyman Jim Nielsen, 916-319-2002

Senator Bob Duttton, 916-651-4031

Senator Mimi Walters, 916-651-4033

Assemblyman Kevin de Leon, 916-319-2045

Assemblyman Roger Niello, 916-319-2005

Action Alert: Draconian CA State Budget Cuts

It's not too late* to make your voice heard on the proposed budget cuts that will dramatically affect people with developmental disabilities and their families. Please read the information on the ARC California page and once there, scroll down for list of legislators to call or email TODAY.

* They were going to begin making decisions on Saturday; I haven't seen any updated news articles indicating that these cuts have gone through as of 8 AM Monday.

Shopping may never be the same again

Today on one of our early morning walks to the coffee shop following a 5:30 am wake-up (when I'm really really tired it's a very early morning drive to the Starbucks drive-thru), Quinn reached an important new milestone. He can shop. And if you can shop in our society, you can get along pretty well.

I was sleepily standing in line waiting for coffee, when I saw his cute little finger coming out of the stroller, pointing at the goodies in the display case! Then he signed "more" several times! It wasn't entirely clear what he was pointing to, so though I was tempted to buy him the entire jar of giant chocolate chip cookies to celebrate the occasion, I got him a piece of pumpkin bread.

I guess the days of being able to slip quickly in and out of a toy store to get something for another kid's birthday without getting something for Quinn are over, but at least for awhile, I don't think I'll mind at all.  All of these little milestones are all the more joyful because we wait so long, and we know how hard Quinn's "team" works to help him progress, and how hard Quinn works to learn new things. He is so proud of himself when he accomplishes a task, he applauds for himself. 

Our First IEP

On Friday, we attended Quinn's first Individualized Education Plan (IEP) meeting with the school district. This was a meeting to discuss Quinn's eligibility for special education services, the transition from early intervention to special education, and the specific goals and services provided to meet those goals. Quinn is not turning three until September, but our school district wanted to have the initial meeting now, before folks leave for summer vacations. I'm a plan-ahead type of person, so that worked well for me.

Years ago I attended IEPs as a support person for others in a professional capacity, and so I know they can be contentious meetings. As we told friends and professionals about our upcoming IEP, they advised us to make sure we knew our rights and be prepared to advocate.

I'm happy to report that the meeting went very well and was entirely drama free. What a relief! And they offered to give Quinn everything we'd want him to have (except PT, which they admitted they should have evaluated for, and will be evaluating for asap). 

There were, however, a few odd/sad moments.

First, the odd moment. At the very beginning of the meeting, when they asked the school psychologist to report on Quinn's eligibility for services, she seemed tentative as she said, "Quinn has significant global developmental delays which do qualify him for services [pause] which is consistent with [pause] a diagnosis of [pause] mental retardation." Then everyone in the room looked at Zac and me, seemingly wondering, "Are they gonna cry?" So I just said, "Yeah...it's not a surprise." And the meeting continued.

Then a couple of sad moments. The first goal they wrote for Quinn, which he is to accomplish over the next year, is to make a chain consisting of X number (can't remember) of large beads on a thick rope. Quinn has had big beads and a thick rope in his toy collection for about a year (thanks, Grandpa Bill!). He plays with them often, and can sometimes get one bead on. His therapists also use beads like this regularly with him. The sad part is that not too long ago, we had another couple over, and their son, who is several months younger than Quinn, made a long necklace with the same beads in about 15 minutes, after his parents showed him just once how to string the beads. They said he did not have beads like this at home and had probably never played with beads. So, the idea that after a year of instruction Quinn would be able to make a bead necklace successfully on 75% of all trials was a little depressing.

Also, though there were goals related to speech, none of them actually stated that Quinn would, in fact, speak. Again, this is over the next year. The goals were about making pre-speech sounds, improving imitation skills, drinking from a straw (important for mouth control), etc. But no actual talking appears to be expected.  I do think Quinn will be talking more in the next year. As noted before in this blog, he does say a few things, (like "moh" for more, and recently animal noises, and he is signing several words now, too). But it's just kinda sad that he's not so far along that it didn't seem appropriate to have a goal stating that he'll speak X number of words over the next year.

Random observations from 4th day on Sertraline

Update day 5: I need to be very careful when consuming large amounts of sugar. Just had a small hot fudge sundae and I'm crashing very hard.

• I have spent much of my life being extremely anxious about things, and second guessing myself and being wracked with paralysis and indecision. It is very odd to have such feelings dramatically decrease simply because I'm taking half of a very small pill once a day. I didn't realize how much mental energy I was spending on these thoughts until I stopped having them.
• It really amazes me how small the pills are. And I only take half. It's much smaller than an aspirin or Tylenol or Advil. But the effect is much more profound.
• I'm shocked at how cheap it was, compared to the effect it has. I paid a $15 co-pay to visit the doctor, and paid a $5 co-pay to the pharmacy for a generic drug. It's weird to knock yourself out of a real depression with something so cheap. A single D&D book costs more. There are bars/restaurants I go to where I'd barely be able to get drunk for $20 once you added tax & tip. And I get drunk easily.
  
• I can't believe this stuff is legal and pot isn't.
• I hope to use the relief this is providing to reorganize our life so that the causes of my depression are removed. A big step: We've been authorized by Quinn's doctor to use 5mL of Benadryl to help him sleep if he wakes up. And it worked on him the one time we used it. Alleluia. Now to get more work...
• I'm on drugs!
• I'm fascinated by my own mental states, how they're different, and how I react to things. I'm constantly making comments about how I'm reacting differently, of how things feel different in my new state. I imagine it might get tiresome soon. I was like this the one time I really got high on pot. I never did most drugs, and it's rare that I get drunk. So it's very unusual for me to be in an altered state of consciousness.
• I still would rather play on the Internet than do work, chores, or unpleasant tasks.
• I have not become an uber-super-being. The somewhat manic rush I had after the first day has worn off.
  
• I still need to sleep the same amount.

Quinn looking frizzy-haired in the park

Uhhh......I'm on drugs but now its different

Earlier today from Facebook:

just learned that a small number of people get a big rush from SSRIs right away. I think I'm one of them. So maybe it's not all in my head! Whee! I've had no caffine today but I'm more hyper than when I did! Of course, hyper for me might be normal for you.

Right now, I seem to be crashing. Maybe I'm just more sensitive to sleep deprivation now? Want nap nap nap, but Quinn, possibly because he woke up so late because he was up in the night (again), isn't napping. Speech therapy in 30-40 min here at home. Must rest rest rest...

Got permission from doctor to try Benadryl for sleepless Quinn. Hope it helps.

I'm still on drugs

OK, I'm going to have to write more about this experience later. It's been about 14 hours and I'm still feeling it. Maybe I'm imagining things or maybe I'm super-sensitive to this stuff.

Should I really be blogging all this? It is by far the most interesting experience I've had in a while.

Feelin' OK.

Let's see if that wakefulness side effect will happen to me...

A Theory on how Sertraline works

Sertraline makes you hyper, lowers the anxiety that you'll mess something up, and makes everything equally interesting so you figure you might as well do the interesting to-do item because it's just as interesting as the other interesting things you might otherwise do. Whee!

UPDATE: I'm feeling more normal now. The tingle is still there, but I have less urge to type "Whee!".

I'm on drugs!

Well. I'm feeling quite a bit different today. I started feeling better last night while playing D&D minis. At first it was very bad. I was in Games of Berkeley, staring at the new minis that had come in, and thinking "This won't give me any pleasure. I might as well not buy them." But then I thought I'd feel stupid hanging out with everyone who was enjoying the new minis if I didn't have any of my own. So I bought some and played a game. I lost, but it was a good game and it got me feeling normal, like myself again. I also had a good conversation with my friend Paul, who was kind enough to check up on me after reading my "blanket of lead" post.

This morning Quinn is going back to school, having recovered sufficiently from his eye boogers (with the help of antibiotic drops) that he should no longer be eye booger contagious. I also took my first half dose (25 mg) of Sertraline, the generic version of Zoloft, this morning. (Holy fucking shit: in 2007, almost 30 million people in the United States were on this drug. That's like 10% of the country.) It may be all in my head, but I'm definitely feeling some effects: there's an overall hyperness and jitteryness (it could be the cup of coffee), a lack of introspection, some slight tingling on the pinky side of my right hand. Rather weird, I must say. I'm certainly not feeling like a blanket of lead or frustrated, which is nice. But I don't think my writing is as good, either. I have the urge to write very simple, straightforward, declarative sentences, devoid of poetic ornamentation. Of course, maybe that will make my writing better.

Not looking forward to the possible negative sexual side effects, but depression has definite negative sexual side effects so I guess that's a risk I'm willing to take. I'm utterly convinced that that previous sentence would have been written better were I not on this drug. This is very strange: it feels like my Internal Monologue is queiter, that I'm more directly connected to the outside world. It feels like I'm out of my head a bit, which is very unusual for me.

Well, the whole point of this is to be able to get more work done, so off I go...

Blanket o' Lead

It seems my rage and anxiety over Quinn's cold and the amount of time I have to spend caring for him has given way to a dull, gray, dead feeling. It's like a blanket of lead has fallen over everything. Quinn wont be able to go to school tomorrow. He's got boogers coming out of his eyes and needs antibiotic drops for 24 hours before he can go back. I'll have to spend most of another day taking care of him. I'm not pissed. I'm just sort of reacting like how I imagine a stupid cow might react: Slowly, not really caring much about anything. It's sort of a hopeless, resigned feeling. Like my body is going into autopilot or semi-hibernation until this shit is over. (But when will that be? Never.) I can feel my reaction time blunting: when my senses receive a new stimulus, my first reaction isn't "What was that?" but more "Oh God, should I even bother?" This really isn't like me. I can still "pass", and with effort carry on phone conversations, do uncomplicated household tasks, do all the Quinn stuff, and fulfill the daily routines of life. But it sort of feels like I'm operating myself by remote control. And that I'm not a particularly fun toy to operate. Again, feelings do come through. But they're strangely muted. It's just too much effort to get worked up about anything.

I'm seeing a doctor tomorrow morning. Or rather, a physician's assistant. Let's see what modern pharmacology has to offer.