Excuse me while I whine just a little bit

I really have nothing to whine about. Some parents we know are at the hospital or the doctor's office All.The.Time. We are so lucky. Quinn is healthy, happy, and making great progress. But we are at the doctor's office more than most "regular" kids, and I am feeling a bit bummed about our last ordeal and some upcoming ones.

As readers of this blog know, Quinn has never, ever been a great sleeper. We have had some brief weeks of reprieve from frequent waking, and clonidine has certainly helped with falling asleep, but in general, Quinn's sleep is terrible.

So last night we took him to a sleep lab for an overnight evaluation. (Which, by the way, took approximately six months to get approved by insurance and scheduled...but that's another story.) The sleep lab people were as nice as they could be, but let's face it, taking your kid to the hospital always sucks. Quinn cried when they attached all the monitoring stuff to him (head electrodes covered by the weird little hat, plus monitors for his legs, heart, and breathing). I'm grateful for the opportunity to learn more about why his sleep is so disrupted, but sad that we have to do it in the first place.

We also need to schedule the following additional medical visits for him:

• Dermatology appointment for the large birthmark on his face, which, because it is getting ever darker, concerns the pediatrician
  
• Eye surgery to correct his strabismus
• Probably a repeat of the ear tube surgery since apparently at least one tube has fallen out, and one ear is "gunky" again (we learned this at the audiologist visit a few weeks ago)
• Possibly another visit to the MIND Institute if we decide to enroll Quinn in the minocycline trial

I'm sure we'll all feel better tomorrow after some rest. We'll just focus on holiday fun (that'll be the next post). Maybe another visit to Holiday Lane will cheer me up.

One of the houses on Holiday Lane this year.

Another dull post about sleep written by a sleep-deprived parent

It's looking like we will need to take Quinn for one of those overnight pediatric sleep evaluations, assuming we can get our insurance to pay for what I'm sure is an absurdly high fee. Quinn is taking over an hour to fall asleep with meds and still waking up multiple times per night, and at least twice a week he is up for hours in the middle of the night. We are so tired.

The cause of all this is not just that Quinn doesn't "need" more sleep. He is tired and cranky often. Sometimes in the middle of the night he is happy to be awake, but usually he is red-faced, crying, frustrated, and unable to get to sleep. He nods off instantly almost every time we take him for a drive. He is often late to school because after being up for hours in the night, he finally falls asleep at 6 in the morning, and we don't have the heart to wake the exhausted little man.

And though I am a bit grumpy due to sleep deprivation, if one more person says something about how "normal" it is for kids to have sleep problems, I might say something quite rude. There is nothing normal about kids and parents not getting adequate sleep for more than a few weeks at a time for over three and a half years even after reading numerous sleep books, getting ear tubes (which were supposed to help with sleep by relieving uncomfortable pressure), making multiple doctor visits, and trying three different sleep medications.

Grrr. End of rant. Off to bed.

Maybe it was good we were lazy about lazy eye

So we went to the doctor yesterday to discuss Quinn's sleep problems, and it turns out that the eye drops Quinn was prescribed for lazy eye (which we had begun using with greater frequency over the past 10 days in an effort to be better about treating the lazy eye), are a CNS stimulant for sensitive individuals. People with neurological conditions have greater sensitivity to the stimulant effects. Wow. We will most likely still adjust the sleep medication (on the doctor's orders, we increased clonidine last night and had a great night's sleep), but we are very happy to discover that simply NOT using those drops may improve sleep. This is great, but disturbing news. I think from now on, when anyone other than the MIND Institute or our pediatrician prescribes something, we will run it by our pediatrician first. Too many professionals seem to be unaware of the complexity of treating a kid with FXS. As for the lazy eye treatment, we may have to trick or bribe Quinn into wearing an eye patch. Arrr!

Less sleep, more words

The last few nights, Quinn's sleep has been awful: multiple wake-ups between midnight and five am, loud screaming and crying. It's been very hard. His clonidine and melatonin regime, which was working quite well for a few months, seems to have become ineffective. We're calling the doctor toady. Perhaps we need to increase the dosages. We've read some pretty discouraging statistics on Fragile X Syndrome and sleep disorders. They go together at a very high rate.

On the brighter side of things, Quinn is talking a lot! He can say "watch" (as in wristwatch), both spontaneously and on demand. He also said "box" several times this morning while grabbing a cardboard box that was on the kitchen table. We also cut his hair last night and it looks much better.

Onward we go.

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...

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.

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. 

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.

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.

Depression

This is not a post about the economy.

Being depressed doesn't mean I can't feel pleasure. I seem to be able to feel pleasure and enjoy the things I've always enjoyed. It's just that pleasure has no afterglow: once the positive experience is over, the funk slams down like anvil. ("Funk slams down" sounds like a groovy '70's tune. Trust me: it's not. The only 70's music I'm grooving on right now is Pink Floyd's "The Wall", which cannot be a positive indicator of mental health. Not entirely true: Keith Jarret's solo concerts are also a great comfort and solace.)

Anyway, remedies pharmacological (SSRIs) and logistical (get a nanny so I don't have to deal with him as much) are under consideration.

[end iPhone composed portion of post.]

I didn't realize that being told by my therapist that I was showing signs of depression would have such a big impact on me. It certainly didn't come a surprise: anyone who's read this blog or followed my Facebook updates may be wondering why it's taken me so long to put the obvious label on it. And any of the stressors I've been going through (unemployment, child permanently mentally retarded, purchasing and renovating a home) are on their own enough to drive someone into mental illness. It's not like things suddenly got worse last Thursday when I talked to my therapist. But I certainly feel worse. I feel not like myself. I don't know if its the impact of being told I'm showing signs (albeit mild ones) of a bonna-fide DSM mental illness that is making me feel like crap, or that being told I'm showing symptoms of depression has given me permission to feel as shitty as I've wanted to feel all along.

The thought of spending time with my son makes my chest tighten.

So, what exactly have I been experiencing?

• Pleasureable experiences don't leave any lasting impression on my mood
• I'm easily panicked and overwhelmed by seemingly small tasks that trigger anxiety or insecurity (this has been a problem for me for a long time, but has gotten worse recently).
  
• I find I need my pleasures in a very visceral way, the way I imagine a drug user might need them. I need them to ward off other things.
• I'm very moody and irritable. I'm not used to feelings of rage and helplessness on such a frequent basis.
• Difficulty understanding what my wife says: I'm saying "what?" and "huh?" a lot. It might be an actual hearing problem. But more likely it's just because I'm escaping to alternate imaginary worlds as much as possible in an effort to get some peace, control, and solace. Or maybe it's because I don't particularly want to hear what she's saying, for fear it will be some request involving Quinn or otherwise disturbing me.
  

Of course, a lot of this may simply be sleep deprivation: Quinn has woken up at 3:30 am every night for the past 3 nights or so.

My therapist tells me that anecdotally, about 75% of couples raising a special needs child have one of the parents go into depression some time in the first three years. She also said that it's usually the woman. But I think Sarah is dispositionally unsuited for the role of depressive. Which is not to say that all this isn't incredibly hard for her.

Let's see if I can get some sleep...

UPDATE: No.

Status updates

My posting to this blog has suffered recently, as I've been using Facebook as my primary venting/griping forum. For those of you not there, I'll transcribe some of my recent Quinn-related material. In chronological order:

Zachary Drake is with sick baby. :( How can I treat Sarah like a princess? Happy Mother's Day all (including those who are trying/hoping/attempting to convince hesitant partners!).
May 10 at 8:03am · Comment · Like

Happy Mother's Day Sarah! Quinn & I love you very much. You are so good to both of us :) :)
May 10 at 9:41pm · Comment · LikeUnlike · Share

Zachary Drake has read "Big Red Barn" far too many times today. Fortunately, I think Quinn will be able to go to school tomorrow. I was not optimized for extended bouts of special needs childcare. (Is anyone?)
May 11 at 6:17pm · Comment · Like

Zachary Drake needs D&D night like this planet needs to control greenhouse gas emissions.
May 12 at 4:57pm · Comment · Like

Zachary Drake another 4am wakeup. Resenting your own child makes you feel like crap. He's awfully cute though.
May 13 at 5:54am · Comment · Like

Zachary Drake Quinn built this tower with some guidance from his physical therapist. His skills are improving!

Zachary Drake So looking forward to watching episodes of "In Treatment" with my Yummy tonight.

Zachary Drake Quinn watches the garbage truck drive away

Zachary Drake Quinn's not napping because of gardener noise. I really needed that couple hours. But onward I trudge!!
May 15 at 2:29pm · Comment · Like

Zachary Drake got to see "A Streetcar Named Desire" last night. A play! How grown up!
May 16 at 7:04am · Comment · Like

Zachary Drake God, it feels so good to do real work. The show is largely intact in my mind and just comes pouring out if I'm properly focused. I just need to clean up a few spots and make sure I'm in proper mental and physical shape for the performance.
May 16 at 1:26pm · Comment · Like

Zachary Drake is buzzed from a very strong mojito. Yay parents' night out!
May 16 at 7:18pm · Comment · Like

Zachary Drake Quinn started making noises around 3am, and then really woke up around 5am. I've been walking and driving around with him for an hour now. Somehow I'm ok.
Sun 6:06am · Comment · Like

Zachary Drake Strolling through the mall at 6:21 am with Quinn, sleep deprived
Sun 6:27am · Comment · Like

Zachary Drake Quinn has a cold and a cough, so we're keeping him home. Another much needed day snatched away from us. God this parenthood thing can suck sometimes. Now I gotta change his shitty diaper. Oh, did I mention he's permanently mentally retarded? Sigh. (I apologize for the whiny nature of my recent status updates. I will return to political commentary and narcissistic self-expression as soon as possible.)
Mon 7:14am · Comment · Like

Zachary Drake Quinn took no nap today, but by stuffing my face with BBQ spare-ribs and fresh lychee nuts I've managed to stay sane.
Mon 4:41pm · Comment · Like

Zachary Drake Is ready for his show tomorrow morning!!!
Mon 10:32pm · Comment · Like

Zachary Drake got a partial standing ovation today. Happens with Dust Storm a lot: some people thing it's great and stand right away, some feel compelled to follow along, but it doesn't quite reach the tipping point where everyone feels they have to stand.
Yesterday at 4:46pm · Comment · Like

Zachary Drake Quinn's nose is still running like a river. Another day home from school. Another few hours I thought were mine snatched away. Another entry in the ledger of resentment. God this is hard.
8:42am · Comment · Like

Zachary Drake both of Quinn's nap attempts were ruined by bodily functions. What must I do to propitiate the gods?
2:32pm · Comment · Like

Reading these over, I'd say it's a decent sampling of the ups and downs.

6am, up for 3 hours, taking Quinn for a walk

Sleep disorders

Quinn is up again, wide awake and jumping, for no discernible reason. Sarah and I are having a very difficult time. We're going to have to take another crack at this. 2.5mL of liquid melatonin isn't working. The sleep deprivation makes so many other things miserably difficult. And it makes it emotionally very difficult for me.

He has pooped...

...and the explanation for the wakeup is revealed to us. Now perhaps he
will go back to sleep.

No, he wasn't asleep

Update to previous post: he's still awake. His crying got louder so we
brought him into the bed. This seemed to cheer him up, but didn't help
him get to sleep. So we put him back in his crib. I'm going to get a
snack. I'm over the anger part and now I'm in the zombie part.

Note: the times on these posts are integral to the content.

Bad sleep is back again

Quinn is once again having whimpering wake-ups for no discernible
reason. This pushes my helpless rage buttons more than just about
anything else. Once I've figured out that he's got his pacifier, hasn't
pooped, and hasn't wedged his limbs into the crib, there's really
nothing to do but wait him out. He usually goes back to sleep in 30-60
minutes. But the disruption is often enough so that I don't feel quite
right the next day, even if the total number of hours of sleep I get is
adequate. The urge to scream SHUT UP! at the top of my lungs (and I have
a loud voice that's been trained for theater) is sometimes hard to
resist, but I always manage.

Things seem quiet now. I'll see if I can get back to sleep. Maybe if I
just think of this sort of thing as routine it won't trigger such a
reaction in me.

Oh no! Why did I let him make me take him for a ride?

Now he's probably ruined for afternoon nap! Well, at least I got a
latte.

Much happier today

For no particular good reason that I can think of, I'm much happier today than when I wrote that previous post. Indeed, I have every reason to be in an extremely crappy mood. Quinn woke up at 2 am this morning and did not go back to sleep until about 7 am or so. At around 5 am I took him for a drive and got him to sleep, but the transfer back to the crib failed and he woke up again. I managed to sleep a little bit in the morning when he finally slept, but I'm completely sleep deprived. And I had to take him to an ear doctor appointment this morning (it went fine; his left tube is a little encrusted but I got some drops that should take care of it) and then drop him off at school before coming to work.

And the difficult work situation I'm in is still going. But I'm just much happier. Maybe my rant let out a lot of bad energy that needed to get out. Or maybe it was something hormonal. When he woke up at 2 am, I was sleepy and thinking "aw, crap", but it wasn't the crazy feeling of helpless rage that I was having before.

I am thankful, thankful, thankful for my new-found serenity. May it last!

And for the record, I am not now nor have I ever been searching for an actual mistress. Sarah is my one and only :)

The tentacles of obligation

• Work stuff, which I should be doing now
• Insurance stuff/Medical bill stuff: where to even begin?
• Quinn appointment stuff
• Dust Storm stuff: logistics
• Dust Storm stuff: publicity
• Dust Storm stuff: get the show back on its feet
• Thank you notes from holidays
• Catch up on sleep
• Deposit a check
• Valentine's Day stuff
• Clean up holiday decorations
• Bunch o' stuff from to-do lists scattered around my desks
• Oil change for my car
• laundry stuff (always)
• Update Internal Monologue to the new templates
• Return The Tudors season 2 disc 1 to the video store (too impatient for the NetFlix!)
• Suff that should be fun but can feel like an obligation anyway (D&D campaign 1, campaign 2, campaign 3, getting my new GPS to work, setting up my laptop as my main computer)

And of course the usual day-to-day, some of which got on that list and some of which did not.

Somehow the balance is out of wack and my time feels like walls are closing in on it all the time. Just recently evening has seemed to become incredibly short. The time between when obligations are filled (or just pushed aside) and when Quinn's schedule demands I go to sleep seems to have collapsed into a barely over an hour strip of time spent in a sleep-deprived daze avoiding things I "ought" to be doing.

Being a father really blows sometimes. I love my family, but it is a snake pit of obligations and duties that are incessant and unfulfilling. And I didn't feel that way before Quinn. I used to love being at home with Sarah. We would cheer everytime we came back home from somewhere, even if it was a vacation, because home was so wonderful, so safe, such a place of renewal and rejuvenation and comfort. No longer. I used to never understand why people avoided their homes by spending so much time at the office. But god, this place, with all its dysfunction, is so much quieter and safer and attuned to my needs.

Everyone who has raised children deserves a fucking medal or three. I feel like race car that's been pressed into service as a dung hauler. I feel like I should go around wearing a sign that reads "NOT OPTIMIZED FOR THE CARE OF OTHERS". But who would read it or be able to heed it? Sarah's as busy as I am, so I can't fairly ask her to do more. And Quinn doesn't give a rat's ass what I'm optimized for or how much sleep I need. I've never had to be around someone so needy for so long. I've always been able to get the hell out of miserable situations before, to close the door to my room and tell the world to go fuck off. Oh, for the ability to do that now!

For an introvert, there is nothing more scary than another person whom you can't get away from, who can take away any quiet moment, interrupt your sleep, demand your attention, and is 100% designed by nature to insist on his own needs being met and to be utterly oblivious to yours. And the kicker is, because of Quinn's Fragile X, I don't know when the fuck it will end, if ever. I suppose we can move him to a group home or something at some point. Or maybe we should move me to a group home.

I used to fantasize about affairs with attractive women who were extremely eager to cater to my sexual proclivities. Now I fantasize about having an affair with a woman who travels extensively and lets me use her very quiet, empty apartment to curl up with a good book and a cup of tea and then sleep uninterrupted for nine and a half hours.

Maybe drugs are the solution: the purpose of pain is to let you know that you should get out of the pain-causing circumstance. But if one cannot do that without shirking one's moral obligations to one's family, doesn't it make sense to use pharmaceuticals to enhance one's mood? A pain signal that has to be ignored is really just distracting noise, and should be eliminated, no?

Or maybe there are other things in my life that are going to have to give way. Work? Play? The energy it takes to pretend I give a fuck about other people? What lamb is next to have its throat slit on the gore-stained altar that is "caring for a special needs child?" The knife is out, the god wants another sacrifice, and his wrath is terrible to behold.

I better get back to work, I have to leave by 3:30 to pick him up from school.

Sigh.

Catching Up and Random Bits and Pieces

Our posting has been slowed down this week as we've returned to work, etc. Things have been good, just busy. I got and accepted a great new job, and am making plans to transition from my current one. I'm going to New Orleans next weekend for a work conference, so I've also been preparing for that. It will be excellent to see many of my old pals from Haviland Hall and other colleagues.

Quinn woke up at 4 am today. Yep, it's 6, and I've already been up for two hours.

As March is quickly approaching, which is the last IFSP review before Quinn turns 3, we are starting to think about which school district we'd like Quinn to be in. We are hoping to move in the spring, so where we live is open. In my work on transition-age youth (young people ages 16-21), I'd read and written about institutional transitions, which are transitions guided by bureaucratic system demands, rather than client needs. I have to say, now that such a transition is upon us, I have a new perspective on them. We feel like we're just getting to know our early intervention providers, and have settled into a routine. So being forced to make a change just because Quinn will be 3 is frustrating.

Zac is off to play d&d this weekend with some buddies. Quinn and I will be going to our monthly East Bay parents of kids with special needs group, which currently meets at SadieDey's Cafe (formerly Tumble and Tea). If you're in the SF Bay Area, feel free to join us. We also have plans to hang out with other friends we haven't been seeing enough of. It should be a fun weekend. If Quinn will sleep past 4 am.