Love and Survival with Fragile X

New Fragile X drug?

2011-01-10T11:17:00.000-08:00

A lot of buzz in the Fragile X world about this post on ScienceDaily:

The first drug to treat the underlying disorder instead of the symptoms of Fragile X, the most common cause of inherited intellectual disability, shows some promise, according to a new study published in the January issue of Science Translational Medicine. Researchers from Rush University Medical Center helped design the study and are now participating in the larger follow-up clinical trial.

Before we all break out the Champagne, there's this to consider:

The research team, led by Sebastien Jacquemont of Vaudois University in Switzerland in collaboration with Baltazar Gomez-Mancilla of Novartis, found no significant effects of treatment when the entire group of 30 patients was analyzed.

But:

However, in a subsequent analysis, seven patients who had a fully methylated gene, a gene that was fully shut down, presumably resulting in no FMR protein in the blood or brain, showed significant improvement in behavior, hyperactivity and inappropriate speech with the treatment compared to placebo.
"The treatment period in this pilot study was very short and longer treatment might have been needed to see improvement in the whole group of patients. Importantly, the drug was well-tolerated and there were no safety problems," said Berry-Kravis.

Quinn has the fully methylated gene, so this drug might be of particular benefit to him. We'll ask his doctor and his Fragile X specialist about it.

Excuse me while I whine just a little bit

2010-12-21T09:45:00.000-08:00

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.

Advocacy works again!

2010-12-17T13:00:00.000-08:00

It's been awhile since I posted, but we just got great news this morning, and it's of the type I always try to publicize. About two weeks ago we received a flier noting that our son's preschool was being moved to a new cite as of January 3. This flier was not very informative about why or how this change would occur, and it did not give any specific information about the new site, other than the address. Then this week, we received a letter which provided slightly more information and invited us to attend a parent meeting at the new site so we could see it and ask questions.

The new site was woefully inadequate. I will not go into all the details here, but without significant building improvements - unlikely to be completed by January 3 - the site would not have provided a sound educational experience, at least for children in special education preschool.

Luckily, all of the parents in my son's class attended, and we asked many pointed questions. Our concern, distress, and frustration were clear. At the meeting, I asked if the move was a "done deal" and was told that it was. A fellow parent and I started preparing a formal letter to challenge this transition.

However, today we got a surprise from the administration - a letter stating that because of our input at the meeting, the children would be able to complete the school year in the current site! Great news for the current situation, and a reminder that advocacy works - at least sometimes.

August Update

2010-08-27T19:49:00.001-07:00

Well, it's been quite awhile since we updated our blog. It's also been about two years since we learned that Quinn has Fragile X Syndrome. About a year ago I wrote this post, reflecting on how our first year after the diagnosis had gone. I guess the main difference between this year and last year in terms of our adaptation is that it's softened - more background than foreground.

There are moments when we are acutely aware of Quinn's special needs, but most of the time, we're just doing what most people do. We work, do chores, visit family, go to the zoo, wipe our kid's snotty nose, enjoy family meals, go on road trips, catch movies when we can, do laundry, and do all of the gazillion other activities that make up our lives while trying to remember how precious, awesome, and fleeting all of this is.

Quinn's doing amazingly well. He is already doing things I wasn't sure he'd ever do, especially in those dark days just after the diagnosis. He is talking more. He can name many shapes, including "hard" ones like ovals, rectangles, diamonds, and crescents. He can count from 1 to 10. He can follow simple directions. He can sort of put his shoes on, sometimes, like when the constellations are aligned, though even then usually they are on the wrong feet. He can drink from open cups or from straws. He doesn't use a pacifier anymore. He sleeps in a bed, sometimes, all the way through the night. He gives great hugs. He is still very, very happy. Contagiously so. In short, he is a wonderful little boy.

We continue to be lucky to be surrounded by supportive family, friends, neighbors, service providers, and other wonderful people that make this journey possible.

By the way, the great haircut in the pics was just done today, by a neighbor/daycare provider who's been watching Quinn this week while his usual nanny's been away. She did it just because she likes to cut kids' hair. He hasn't had a cut this good, well, ever. And apparently there were no tears. So much to be grateful for.

Why You Won't See Us at the Fragile X Conference

2010-07-10T19:52:00.000-07:00

July 23, 2005

Chesterman Beach, Vancouver Island, British Columbia, Canada

This is where we spent our honeymoon...and where we will be on July 23. In the same hotel, in the same room we were in five years ago. I can't wait! Thanks to all the grandparents and Quinn's nanny for making it possible for us to take some time away from our little angel. We hope to make it to the conference in 2012!

You Can Do It!

2010-06-08T21:47:00.000-07:00

I said this to Quinn the other day, while asking him to take his own shoes off. After the phrase came out of my mouth, I realized that I rarely tell him, "You can do it," and I felt a little guilty and sad. I am pretty sure that if Quinn were typically developing, I would have started saying this at least once a day a long time ago.

I think Quinn will teach me a lot about how to empower a person with a disability as he develops. He already has many skills, and can do so many things. But I rarely encourage him to be as independent as he could be. Sometimes it's because we are in a hurry, though admittedly, it's probably less often that we are in a true rush, and more often that I am just impatient. I need to take the time, sometimes a very loooong time, to wait for him to do more things for himself.

Many of my friends with typically developing kids have already developed the patience to wait for their kids to dress themselves, feed themselves, get in and out of car seats themselves, etc. But often this is prompted by the kid who says (or screams), "I can do it!" Quinn does not yet do this very often. He is perfectly happy to be taken care of, so we have to take the initiative to encourage him to do more for himself.

Quinn & Grandpa Bill reading

2010-05-15T17:59:00.001-07:00

Quinn & Elmo

2010-05-11T10:03:00.000-07:00

For those of you not following Sarah on Facebook:

Sarah: hilarious to open my son's door this morning and see him dancing, naked, to the sounds of his singing Elmo doll

Zac: It was very funny. I was also impressed by his ability to get Talking Elmo to do the dance song over and over again: it's the first one in the sequence when you press the belly button. So Quinn would play the song, then turn Elmo off, then on (the switch isn't easy to operate, either), then press the belly button and get the song again. He was quite methodical about it.

Quinn gets to sit in a fire truck

2010-05-08T13:15:00.001-07:00

NYT article on Fragile X drug from Novartis

2010-04-30T14:32:00.000-07:00

From the April 29 2010 New York Times:

An experimental drug succeeded in a small clinical trial in bringing about what the researchers called substantial improvements in the behaviors associated with retardation and autism in people with fragile X syndrome, the most common inherited cause of these mental disabilities.

[...]
The Novartis trial, which began in 2008 in Europe with data analysis completed this year, was too brief to observe effects on basic intelligence. Instead, researchers measured a range of aberrant behaviors like hyperactivity, repetitive motions, social withdrawal and inappropriate speech. They gave one set of patients the drug and another a placebo, and after a few weeks switched treatments, with both doctors and patients unaware of which pill was which.
The results of the trial were something of a jumble until Novartis scientists noticed that patients who had a particular, undisclosed biological trait improved far more than others. “The bottom line is that we showed clear improvements in behavior,” Dr. Fishman said.

It's interesting because this trial was on adults. They suspect that the drug may benefit children more. We'll be keeping an eye on this.

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

2010-04-27T21:36:00.000-07:00

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.

Sibling rivalry

2010-04-16T20:25:00.000-07:00

We bought this doll for Quinn awhile ago, just because I thought it was cute. It makes gurgling and drinking sounds when you "feed" it with the attached bottle. He has not really been interested in the doll.

Tonight I was playing around and holding the doll like a baby and feeding it. Quinn grabbed it from me and slapped it and said "bye bye"! I held the baby again, just to see what he would do, and he repeated the grabbing, hitting, and "bye bye".

It's fun to see Quinn exhibit developmentally "normal" behavior. And I guess it's good we have no immediate plans to give him a sibling.

Quinn checks out the iPad at the apple store

2010-04-11T17:45:00.000-07:00

Quinn gets a big plush bunny for Easter

2010-04-06T17:39:00.001-07:00

Quinn does his favorite activity: looking out the window at cars and trucks

2010-04-04T11:42:00.001-07:00

Quinn video!

2010-04-01T20:54:00.001-07:00

Now that I have my new iPhone3GS, we should have more Quinn videos! Here's one of Sarah reading Mouse Mess, with Quinn chiming in with the occasional word when we encourage him. He's better at this than I thought he would be. I think there are some words that he just knows by sound and can say even though he doesn't know what they mean (e.g. "about," which he doesn't say in this video but he did for me just before).

Oh my God, this is hilarious

2010-03-10T21:29:00.000-08:00

From The Onion, of course:

Autistic Child Ruins Marriage He Was Born To Save
HOUSTON—With the challenges accompanying his developmental disorder widening the already vast gulf between his parents, autistic child Evan Thomas, 3, continued this week to destroy the failing marriage he was brought into this world to save.

Evan, who through the very act of being born was entrusted with the task of resolving lingering conflicts, soothing deep-seated contempt, and restoring intimacy to Mark and Sharon Thomas' long-strained relationship, has thus far utterly failed in his assigned duties, sources reported Monday.

[...]

Read the whole thing.

Look Who's in a Big Boy Bed!

2010-02-28T21:26:00.000-08:00

We didn't intend to start putting Quinn in a Big Boy Bed just yet. But last night, he was crying at bedtime, so I took him out of the crib and figured I'd read him an extra story. I was very surprised when he walked over to his tiny toddler couch-futon, opened it up, and laid down! So for nap this afternoon and for bedtime tonight, we just put him in it. He seems very happy! This particular Big Boy Bed will have to be temporary. There's no way to wash it as it's just a piece of novelty furniture (looks kinda like this, with starfish, not Thomas), and it's too tiny for one of us to lie down with Quinn if he needs some extra cuddling when he's sad or sick. So this week, we'll be getting him a full-size futon to put on the floor. It seems like Quinn's just growing by leaps and bounds lately. He's really not a baby anymore. Well, except for that binky. But who knows, maybe he will surprise us and just toss it in the garbage tomorrow.

Excuse me while I brag about my kid some more

2010-02-13T09:15:00.001-08:00

Quinn has had an amazing couple of weeks. Potty training continues - he's been doing #1 all week in the potty at home and at school, and just this morning, he did a "real" #2 at home! He still needs his pull-ups, and doesn't consistently ask to use the potty when he needs to, but we are delighted at his interest and willingness to use the potty at least sometimes.

He's also talking A LOT. Saying "watch" because he like's Zac's new watch and "banana" even though he won't eat one. I'd say he has about 25 words now, most of which he does not say consistently, but he is really coming along.

So very excited to see all of his progress. We're off to the toy store to get the little guy a special treat.

Potty talk

2010-02-07T20:16:00.000-08:00

I'm almost too tired to blog this, so I'll keep it short. Besides, this isn't something you'd want too much detail about. Quinn did a tiny (as in, you'd need a magnifying glass) #2 in the potty today. We weren't thinking he was really ready, but he was showing interest, which was fine by us. So it was a complete surprise. But it was definitely intentional, as evidenced by Quinn's giant smile of pride at his accomplishment, even before I offered praise and a chocolate chip. I am SO proud of my little guy.

Maybe it was good we were lazy about lazy eye

2010-02-03T09:22:00.000-08:00

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!

Quinn's new haircut

2010-02-01T18:19:00.000-08:00

Obtained at the cost of much screaming and fussing, but we like the results.

Less sleep, more words

2010-02-01T12:07:00.001-08:00

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.

Talking!

2010-01-22T20:39:00.000-08:00

Here's a list of all the words we've heard Quinn say over the past couple of weeks:

- Nyet! (no)
- Booook
- Bye (sometimes said to people who've just arrived at our house)
- Dada
- Ma (Mama)
- Car
- Muh (more)
- KiKi (Kitty)
- Go!

And lots and lots of speech-like babbling. We are so proud of our little man!

Lazy about lazy eye treatment

2010-01-17T22:15:00.001-08:00

So Quinn is developing a lazy eye, aka strabismus, a common problem for kids with Fragile X. We were prescribed some drops to blur the vision in his "good" eye so that he is forced to use the lazy one, and thus hopefully avert lazy eye. But as you can imagine, Quinn has no love for the drops, so we've been bad and lazy about using them. Has anyone else had to use these drops? Did they really work? Perhaps your success story will motivate us to adhere to the treatment a bit better.

A picture is worth a thousand words

2010-01-04T12:10:00.000-08:00

Here I am, trying to wrangle Quinn into his stroller as we play tourist at Fisherman's Wharf last month (Dec 2009). Fortunately I am feeling better and better these days and have to wear that expression less frequently.

Fingers Crossed for a Boring 2010

2010-01-01T18:42:00.001-08:00

Happy New Year! We are pretty glad to say goodbye to 2009. It wasn't all bad, but there was way too much going on. In the 12 months of 2009:

Zac got laid off and got depressed
I left one job and started another
Quinn changed schools twice (one school closed, he "aged out" of the second school by turning three, and he began school district preschool)
Quinn transitioned from "early intervention" to "status 2" services through the regional center
In the regional center and school transitions, we had to changes social workers, occupational therapists, speech therapists, and physical therapists
We bought a house, remodeled it (with two contractors because we had to fire the first one), and moved into it. We lived with the remodeling for some time, including periods of having no kitchen, no furnace, unreliable electricity, and people and noise in our house for months.

Of course this is an incomplete list. We are so grateful to our friends and family for supporting us through all of this. We know we owe you! Adieu, 2009. May 2010 be totally uneventful!

Perks of having a child (our particular child) with special needs

2009-12-23T07:33:00.000-08:00

Because our sense of humor about having a child with special needs keeps us sane:

He cannot run. He is pretty fast with what one of his teachers has described as "hurried galumping". Still, chasing him down is not too difficult.
He does not know that a big holiday is coming up, let alone one in which he will receive gifts. There has been no begging or pleading for toys.
Preschool is free.
He does not really say "no". (But he is getting close, and occasionally says something more like the Russian "nyet".)
Our doctor prescribes drugs to help him sleep.
The toys people give us are usually a bit advanced for him, so we get to savor and enjoy them for a loooooong time before he outgrows them.
When I put the crib tent up almost a year ago, some folks told me Quinn would figure out how to escape within a month or so. He's made no escape attempts yet.
We do not worry that any of our "bad" parenting (letting him watch too many videos, letting him eat sweets, letting him have lots of totally unstructured, "unenriching" time, etc) will prevent him from being a Rhodes Scholar.

Advocacy on the ABLE Act - Exciting Update!

2009-12-17T19:52:00.000-08:00

Awhile ago I posted about the Achieving a Better Life Experience Act, which would allow parents of kids with disabilities to create tax-advantaged accounts for their children's medical, housing, and other living expenses. I emailed our Representative, Pete Stark, about this bill (only the first few lines are what I wrote - the rest is from the sample email from the Fragile X Foundation). Here's what I wrote:

...As the parent of a three-year-old with fragile x syndrome, I ask that you support this bill. It will be an enormous help to us as we plan for our child's future. We opened a 529 Education account for him before he was born, but it is unlikely he will ever be able to attend college. He already shows delays of 50% or more in every area of development. In his areas of greatest delay, his age equivalent is just 12 months old. On behalf of the individuals and families impacted by Fragile X living in California, I am writing to ask you to cosponsor the Achieving a Better Life Experience Act (ABLE) of 2009 (S 493/HR 1205) led by Senators Casey (D-PA), Hatch (R-UT), Dodd (D-CT), Kennedy (D-MA), Brownback (R-KS), and Burr (R-NC) and Representatives Crenshaw (R-FL), Meek (D-FL), Kennedy (D-RI), and McMorris Rodgers (R-WA). The ABLE Act will allow individuals with disabilities to create a disability savings accounts or 'ABLE Accounts' that would accrue interest tax-free.

The account could fund a variety of essential expenses for the individual, including medical and dental care, education, community based supports, employment training, assistive technology, housing, and transportation. The legislation prohibits amounts held by, or paid or distributed from any ABLE accounts from being treated as income or assets when determining eligibility for benefits provide by any Federal program. Asset development is one step towards improving economic self-sufficiency, and the legislation's focus on encouraging asset development will greatly incentivize people with disabilities to live more productive lives through earning and saving resources for their future.

If you would like to cosponsor this legislation, please contact [Bryn McDonough (202-224-6324) in Senator Robert Casey's office or Dustin Krasny (202-225-2501) in Representative Ander Crenshaw's office]. Thank you for your consideration of this very important piece of legislation.

Today, I got this response:

Thank you for contacting me about HR 1205, the Achieving a Better Life Experience Act of 2009, which would create a tax-advantaged savings instrument for parents to invest in on behalf of children with disabilities, and prevent these accounts from disqualifying the child for federal entitlement.I do not normally support these kinds of tax-free savings instruments in the tax code. However, in this case, I think that if the tax code provides instruments for parents to save for the well-being and future of a child without a disability through college accounts, there should be a similar opportunity to save for the future of a child with a disability. In addition, I agree that federal programs that are intended to improve the welfare of our most vulnerable must not create a perverse incentive for family members to not save money in the child's name for future care. Upon your suggestion, and the input of other constituents on this matter, I have decided to co-sponsor this legislation.

"Da Da!"

2009-12-12T20:15:00.001-08:00

Quinn unambiguously said "da da" and pointed at me this morning. He was holding one of his favorite books and wanted me to read it. Tonight he said "da da" a few times when he wanted to be carried when we were looking at the Thompson Avenue Christmas lights.

It was an extremely rare moment for me. I felt so proud of Quinn and so loved by him. It made my heart so happy. But there was melancholy too. I thought to myself, "So this is what those other parents are going on about all the time. This is the love and joy that they're always talking about. This is what sustains them when things get hard, as they inevitably do. No wonder they gush so much." I wonder how much easier parenting would be for me if I got those moments more often. I wonder how much more often I would get them if Quinn were more "normal."

When Quinn said "da da", I felt like I could endure endless sleepless nights, nurse him through an infinity of sick days, wipe a thousand runny noses and change a million poopy diapers with a smile on my face. All it took was a little recognition, a little declaration of his understanding that he knows who I am. Why are those words so important? I know he loves me. I see his face light up when I pick him up from school, I see the laughter in his eyes and heart when I play with him. I know he recognizes me. But somehow it isn't the same as when he says it. Why is that so important? I know part of it is that we've waited so long for him to speak, and to see speech finally emerging is like warmth on a bitter winter day. But this is different than "go" or "ah duh" ("all done"), as wonderful as it is to hear those, or see them as signs. It's ME. I'm "Da Da". What he said means me. And knowing my child means me; nothing has moved me the way that knowing has moved me. I suppose it's like the first time you realize that the person you're in love with loves you back, but it's along a different, quieter dimension.

Well, of course I tried, with mixed results, to get him to say it again and again and again. But Quinn is not one for command performances. I'll have to be patient and let "Da Da" come to me as a gift. I love you, Quinn. Da Da loves you.

The UC Davis MIND Institute

2009-12-06T07:09:00.000-08:00

On Thursday we went to the MIND Institute for a second visit. We feel very lucky to live so close to the MIND, as we know folks come from all over the world to go there. Quinn is enrolled in the "baby study" there, a study comparing the visual processing of children with Fragile X or Down Syndrome with typically developing children. Quinn was not too into the movies they show to assess visual processing; he much preferred the Yo Gabba Gabba YouTube Clips they show in-between the study movies to keep kids interested.

While Quinn was watching the movies and completing the Mullen Assessment, I met with other researchers to complete a parent interview (including the Vineland Scales and a genogram). After we'd finished with the research stuff, we met with Dr. Hagerman and her colleagues for a clinical assessment.

We came away with some helpful recommendations/ideas:

- We're going to try a little tiny bit of sertraline with Quinn to see if it helps decrease anxiety and encourage expressive language skills. We were offered this last year and refused, but as Quinn is still not really talking, and they have had some success with sertraline and few side effects, we're willing to give it a try.

- We can wait on moving to the big boy bed

- We can continue to move very very slowly on potty training (Quinn likes his Elmo potty and likes to sit on it and make Elmo talk, and that's about it)

- We are definitely right to be concerned that Quinn's not getting enough/the right kind of speech therapy at school. According to their assessments (which differ somewhat from other assessments Quinn has had), last year his expressive language was at 7 months, and this year it is only at 9 months...so lots of work needed there.

- A few sessions with an in-home behavioral therapist can help us avoid tantrums, which often involve Quinn's biting us and pulling our hair.

One thing we really like about going to the MIND is not just the specific helpful advice, but how everyone there, including the other families in the waiting room, "get it". No one gives us really stupid advice (as we commonly experience out in the world). No one stares or asks silly questions. It's just such a pleasant place to be. We are very grateful for the opportunity to meet with such knowledgeable, friendly people and it gives us hope that we have options for managing some of Quinn's special needs.

Survival Garbage Trucks

2009-11-20T22:07:00.000-08:00

As you may have noticed, we have sitemeter on our page, which tells us how people find this blog. Most hits come from predictable places: through other Fragile X blogs, through our facebook pages, or from the Blogger navigation bar (which takes people to a random recently updated blog).

However, it is really fun to see how people find this blog when searching. Someone typed "survival garbage trucks" into Google, and lo and behold, the first listing is this entry. I guess this is our claim to fame.

"Mental retardation" vs. "intellectually disabled"

2009-11-17T14:16:00.001-08:00

I'm not sure I agree with the current push to remove the phrase "mental retardation" from the national vocabulary. Yes, it's come to have negative connotations, but any phrase that means the same thing will get those negative associations, too. "Mentally retarded" is already the result of this process: it's a euphemism for "imbecile", "moron", or "idiot". We need some phrase we can use to describe the phenomenon. When my son is doing something unacceptable in public, and I say, "Pardon me, he's a special needs kid," people don't know what the hell I'm talking about. I suspect "intellectual disability" would lead to the same "huh?" reaction. But when I say, "I'm sorry, he's mentally retarded," it hits with the proper impact. People get it, or at least get something close enough that they know they should apply a different standard of behavior.

I do not like it when people use "retarded" as a generic insult or as a substitute for "fucked up", and will often gently point this out when I hear it. I feel the same way when kids use "gay" as an insult: it doesn't really do any good to come up with a new word for "gay" that isn't used as an insult. What we have to do is show people that it's not wrong to be gay, and that it's hurtful and destructive to use the term as if it is. Similarly, it is not wrong to be mentally retarded, and to use "retard" as an insult is cruel.

If people started using "cancerous" as a pejorative, the solution would not be to rename cancer "abnormal cell replication" in all federal statutes. It would be to socially penalize people who were insensitive enough to turn it into a term of abuse. I guess I feel that way about "mental retardation". It doesn't seem to me that the term is "only used to demean and insult people" as the ARC posting I link to states. But maybe this is a bigger problem outside my own social circle.

Comparisons are just getting weirder and harder all the time

2009-11-11T11:08:00.000-08:00

Of course I know I "shouldn't" compare Quinn to other kids. Of course. He's his own little person with his own special gifts (like his adorable laugh and contagious joie de vivre). But frankly, it's just getting weirder and harder all the time, and I fear the comparisons will only become more stark and obvious as time goes by. Intellectually, I understand why this is. The gap between Quinn's and typically developing kids' abilities will widen because his rate of development, like most boys with Fragile X, is about half that of (give or take) other kids.

Today we tried a new play cafe. It was fun, and a special treat for Quinn and I since I'm usually working when all the cool play cafes are open. Quinn loved the ball pit, different fireman hats, and puppet theater (for playing peekaboo with the curtains).

It's just shocking, though, to see kids literally half Quinn's size and age, talking, running, jumping, going up and down stairs with ease, and engaging in what looks like very sophisticated pretend play, all of which are things Quinn cannot do yet. I know he will be able to do these things eventually, but there will be a point where other kids will start doing things that Quinn will never do.

It's also socially awkward because people seem to do a double take as my relatively big kid needs help with so many things, doesn't talk, and plays peekaboo with mom for a looooong time while other kids run off to play house in the pretend kitchen.

I also felt a bit jealous of other parents, sitting calmly drinking coffee for at least 75% of the time, while I'd say my sit-to-redirect ratio was more like 25% sitting, 75% redirecting. Most of the other kids didn't need to be told 5,000 times (in one hour) that the toys are "not for your mouth" or that you cannot just sit on other kids or touch their faces (Quinn seems oblivious to these social norms that other, much younger children, seem to get). Other kids didn't fall twice, bite their parents, or pull their parents' hair. I kind of get it why we are so tired and stressed.

And this was not at all a bad time for Quinn and me. This was just a normal time. Not a stellar, Quinn-as-superstar time, but not a bad time, which is much worse than what I've described above. This morning was what most activities with my little guy are like.

I can't imagine what it would be like to be out, sitting at a table drinking coffee, for at least 20 minutes while my kid played without incident. My favorite "other parent" example involved another mom, relaxing at her table, when her two-year-old (I know her age 'cause the mom told me) brought her a pretend pizza to eat and said "Pizza, Mommy." The mom said, "Thank you! I love pizza! Can you bring me some parmesan cheese to put on it?" The little girl ran off, happily, and was gone for another 10 minutes. Wow. So many things going on there that are way beyond Quinn's abilities. If this happened to me, I'd probably jump for joy and order a round of cappuccino and chocolate milk for everyone.

I know...I'm whining. I'm a lucky parent of a terrific little guy. But it is tough.

Beach Baby

2009-11-04T21:43:00.000-08:00

As promised, here's the first of many pics we can start posting now that we've figured out how to get the pics from the new camera onto the computer. Despite our many miserable ongoing contractor woes (we just fired our general contractor, so it's pretty bad and we still don't have a furnace), we are delighted to be living in our new town. Quinn loves it too, and among his many favorite places here is the beach.

Quinn's new school

2009-10-27T22:08:00.000-07:00

Before I start this post, I want everyone to know we will soon be updating LSFX with more fun pictures! We just got a new camera, but I haven't loaded the software onto my computer yet that will allow me to upload the photos.

Anyway, I was thinking that I hadn't said much yet about Quinn's new school, and it might be of interest to folks who are exploring educational options for their little ones who have FXS.

Quinn's new school is a lot like his early intervention program, which we loved, though the new school is a little less warm and fuzzy.

The program, designed for kids with autism, is about five and a half hours a day and uses ABA, PECS, TEACHH and other teaching techniques. It has a 1:2 ratio. Though Quinn does not have a diagnosis of autism, he seems to benefit from these techniques. He recently did get a diagnosis of PDD-NOS, which I don't entirely agree with, but that's a topic for another post.

Quinn's also still getting occupational, physical, and speech therapy, so no complaints there. We did recently have a 30-day IEP meeting in which things were cut slightly from our previous IEP, but, well, you have to pick your battles.

One thing I'm finding tough is that I feel like I know very little about Quinn's days at school. We have a "home-school communication system" (that's a quote from the IEP, folks, most of us would call this "system" a notebook), but the teacher's notes are rather brief - often just 1-2 sentences every few days. For example, one day the note was, "Please bring extra pants." And it's not like I can ask Quinn about his day. His old school teacher wrote long notes in his "home-school communication system", we met weekly with a parent educator who talked with us about Quinn's progress and ways to incorporate more learning at home, we were encouraged to hang out and observe anytime, and the staff in general were more chatty at drop off and/or pick up.

So that's one thing I'm struggling with a bit - it's hard to rant or rave about a program that I don't know much about. Any suggestions from others about how to get more info on what my kid is doing all day at school?

Yay! Drinking from a Straw

2009-10-19T20:40:00.000-07:00

At his new school, Quinn learned how to drink from straws, even skinny juice box straws. It is an awesome superpower! Now we can go almost anywhere in the world, and Quinn can drink, even if we don't schlepp around his kiddie cups. Woohoo! One less item in the diaper bag!

Quinn has been able to drink from super fat straws for awhile, but he hasn't had the ability to close his lips tight enough for a normal straw. This has been an early intervention goal for a loooong time, because I guess being able to close your lips is essential for making some sounds. It has also been a hygiene goal because having lip/mouth control helps to hold back the drool.

Quinn has also been able to drink from open cups for awhile, but the risk of spillage has been too great to take advantage of that super power while in restaurants, unless we order an extra cup and poor a tiny amount from a larger glass into the extra cup. But that can be rather tedious over the course of a meal.

So we are delighted with the straw drinking. One of the things I enjoy about raising a special kid is taking pleasure in all of the little hard-earned accomplishments.

How good is the Fragile X Conference?

2009-10-11T09:50:00.000-07:00

So we need some advice, fellow Fragile X bloggers. How good is the Fragile X conference? We had planned to go, but then realized it falls on the same weekend as our 5th anniversary. We have been planning to spend our anniversary at our favorite honeymoon hotel on Vancouver Island in Canada for years - pretty much since we left the hotel on our honeymoon!

We thought about going to just the first couple days of the conference, and then flying to Canada, but the logistics are complicated. Is it worth it to go for just two days? Do we bring Quinn with us to the conference? How is it for kids there? Is there childcare?

If we can't bring him, then we probably won't go because there's no way we can get someone to watch him for 5-6 days (a few while we're at the conference and a few while we're in Canada). I also couldn't bear to be away from him for so long. The longest we've been away from him is 24 hours, so contemplating just the 3 days for the anniversary trip is a lot.

Anyway, we'd love to hear from those of you who've been! Thanks.

Ch-ch-ch-change

2009-09-28T21:04:00.001-07:00

So much has been happening lately, I haven't had any time to blog. Some quick catch up:

- Quinn is three! His birthday was a week ago. It's a little hard to see my baby growing up, but I can't be sentimental for long while being attacked with hugs and smiles. He just glowed at his party as he saw many people he knew come over. It was his first birthday that he really enjoyed. I don't think he had any idea why people were coming over and giving him gifts, but he had a fantastic time. I am so grateful for his adorable, affectionate, joyous presence in our lives, and appreciate all of the things he has taught me. I love being Quinn's mom.
- We all had a sad, sad last day at his early intervention program, and sad, sad goodbyes with his OT, PT, and ST. As you can see in the picture in the previous post, he started at his new school, and the transition is about as expected. Quinn seems apprehensive when we drop him off and gets fussy towards the end of the (longer) school day. But according to his teacher, he is having some fun there with water and play doh and music, so it seems like he is adjusting.
- Based on a recent assessment, Quinn will most likely qualify for "status 2" from the Regional Center. This means we will still get some continuing support from the Regional Center, like respite and case management, which is a relief.
- Our move was stressful (see below), but it's great to be in our new community. I'm enjoying the beautiful September weather (in the Bay Area, September is a warm, low-fog, no-rain month) and exploring our new neighborhood. Quinn is turning into a real beach baby, and I'm delighted because I have many happy seaside memories from childhood (the Jersey shore). Our new street is also much busier than our old street, which may seem like a drawback, but to Quinn it's a benefit. He is spending a lot of time jumping and gawking at buses and trucks.
- We are having major contractor woes. I really hope we have a usable kitchen, a foundation, and a furnace soon. This has put a damper on the elation I might otherwise feel about our exciting new digs to say the least.

Quinn's first day of new school

2009-09-22T10:59:00.000-07:00

He seems to be settling in nicely!

In our new house

2009-09-08T08:31:00.000-07:00

I'll have to add a picture to this later, but we are officially in our new house! We've been here since Friday afternoon. It was an challenging experience, as most moves are, requiring an army of helpers, including two professional movers, two grandparents, two professional packing assistants, a babysitter, two cleaning people, plus a salvation army pickup for a truckful of no-longer-needed belongings.

But the hardest part is behind us, so now we can enjoy the new home - especially once the kitchen and yard are usable. Right now, it's a bit like camping, and though that was fun over the weekend, I am ready to settle in. Some of that is within our control - like if we can find the box of linens so Quinn, Zac, and I can stop sharing the one towel we could locate...

Quinn in the ball pit

2009-08-29T18:18:00.000-07:00

Quinn loves these, as you can see. This is the free ballpit in the Emeryville Public Market. We'd been before, but Holly's Mom reminded us that it was there with her recent blog post, so we went for a visit yesterday. Lots of fun.

You don't ask, you don't get

2009-08-23T08:10:00.001-07:00

This is one of my father's favorite sayings. (And though my mother doesn't say it, she follows it, too.) I scoff sometimes when he invokes it if what's at stake seems trivial to me (I'm not asking for the $5 anyone owes me if it the time it will take me to get it is worth more to me than the cash.) But last week, what was at stake was significant, and I was glad to have had this mantra drilled into my head throughout my childhood.

As LSFX readers may recall, we had a great IEP in which we were offered everything we wanted: an intensive, specialized half-day preschool program, PT, OT, ST, etc. However, we are moving very soon (the house is almost done - more on that in another post!), and we had this IEP in our current school district, which is in the same SELPA as our new school district, so everything is supposed to transfer pretty smoothly.

However, when I called the new school district a couple of weeks ago to let them know we were on our way and find out about the preschool options, I was told that "all that was available" was a 2.5-hour per day general special education preschool. I was miffed, but wasn't sure what I could do.

I started to investigate our options - private school, inter-district transfer, etc. Then I decided to call the new school district back and politely nudge just a bit more:

I'm a little concerned that the preschool program we discussed last time we spoke would not be appropriate for my son. I'm considering private preschool and some other options. Could we move up our scheduled meeting to discuss the options?

We don't know even know what your son's needs and goals are.

Yes, we do, we have an IEP and a half-day, intensive program is what we signed and agreed to.

Well, actually, we do have a half-day intensive, specialized preschool program. Let's meet a week earlier and you can visit it at that time to see if it would be a good fit.

That would be great, thanks! Quinn's been doing so well in his current intensive half-day early intervention program, I just want to make sure he continues to progress.

!!!!

The first time I spoke with this person, this second option was never brought up. Who knows if Quinn will end up going to this program (though it sounds good), but I am much relieved, and reminded how powerful it can be simply to ask. You don't ask, you don't get.

Duchess: The Cutest Dog

2009-08-21T11:21:00.001-07:00

This is Duchess, my parents' cute little Bichon. Please vote for her in the "cutest dog" competition. It's not just for vanity - the winners get cash!

Go Quinn!

2009-08-14T14:20:00.000-07:00

So, back in April, I posted about how I was "grateful and a little depressed". Grateful for the fabulous new school we enrolled Quinn in, and depressed about the evaluation recently completed by that school, showing, among other depressing things, that Quinn's cognitive level was only around 8 months old. I just got a new eval today, and all I can say is GO QUINN! And GO EARLY INTERVENTION TEAM! This new one shows Quinn's cognitive level as 18 months. What a dramatic difference. We've noticed it at home, but of course hadn't put a developmental age on it. I am really proud of my little superstar and all the work he's done. The report notes what a good student he is, and how much he loves to be praised for a job well done.

It looks like language is still lagging behind, at 10 months, but based on these results, I feel more confident that he will continue to progress...as long as we can keep him in an educational setting that suits him. That's a story for another post. Despite our terrific IEP process, we're facing some hurdles with finding an appropriate pre-school program for our little man.

One Year After the Diagnosis

2009-08-04T20:21:00.000-07:00

It's been about one year since we learned that Quinn has Fragile X Syndrome. It feels like we've lived a lifetime since the day we got that call. I feel proud that we've made it with our sanity (mostly) intact. We both have a few new wrinkles and some battle scars, but we've passed through what might arguably be the most challenging phase of this journey. Quinn's diagnosis has opened up unexpected opportunities. To love, unconditionally, an adorable, happy little person. To see the delight on his face when he uses his hard-earned pointing abilities to ask for things and to show us doggies and trucks. To appreciate the miracle of human development. To meet (in real life and online) strong, smart, funny, wise, patient, inspiring people. To revisit high school genetics and biology lessons. To learn a new vocabulary. To reflect on our values. To experience deep gratitude for the people who have supported us. To join the movement for increased access to resources and opportunities for people with fragile x and other disabilities. To feel strong as a family, as a couple, and as individuals. We are probably not done grieving, but it's good to remember that we're still here, laughing, crying, loving, and being.

Roar! Shhh.

2009-07-28T07:37:00.000-07:00

One of Quinn's favorite books is How Loud is a Lion. We read it A LOT. This morning, when he got up at his usual earlier-than-should-be-legal hour, I put him back in his crib with some books and told him that mommy and daddy needed some rest. We heard some babbling sounds, and then, about twenty minutes later, we heard a very cute and unmistakeable "ROAR!" and then "Shhhh!" - the end of How Loud is a Lion.

Happy Birthday Sarah!

2009-07-26T09:46:00.001-07:00

LSFX readers please wish Sarah, my lovely wife and LSFX co-author, a
most happy birthday! She is a super wife, super mommy, and deserves
much praise on her special day.

[I sent this from my iPhone, so please excuse any excessive brevity or
typographical errors.]
--Zachary Drake

July 22 is Fragile X Awareness Day

2009-07-21T21:07:00.000-07:00

In honor of Fragile X Awareness Day, please ask your U.S. representative to co-sponsor House Resolution 611: Supporting the Goals and Ideals of Fragile X Awareness Day. This bill will strongly urge health professionals to learn about, test, for, and support individuals and families affected by Fragile X Syndrome. Readers of this blog probably don't need a reminder about how important this is. But for anyone happening upon our blog for the first time today, some quick notes. Fragile X Syndrome is the most common genetic cause of intellectual disability. About 1 in 3600 males and 1 in 4000 females are affected. So it is rare, but not that rare. Our son has a classic textbook case, yet we were told my numerous specialists that he was "fine/would grow out of it" and "showed no evidence of having a syndrome". After a stressful year involving expensive doctor visits, an MRI, a chromosomal analysis, metabolic function tests, and other evaluations, my son took a relatively simple $300 blood test that showed he had Fragile X Syndrome. Given how well his symptoms match the disorder, it is sad and surprising that it took so long to get a diagnosis. House Resolution 611 is a step in the right direction. Awareness is very much needed. Click here to take action. It takes just a minute.

Appetite for Destruction

2009-07-21T07:59:00.000-07:00

Quinn's physical abilities seem to be growing by the second, and he has an appetite for destruction. On Thursday, within an hour of my coming home from work, he had dumped out the kitty litter, poured Kitty's water into her food bowl, spilling both water and wet food in the kitchen, and dragged potting soil from outside through the house. I know much of this is normal toddler parenting, but it is exhausting nonetheless!

Dressing him at times has also become a feat requiring strength, humor, and ingenuity. When he is not in the mood to get dressed, he pulls hair, writhes laughing maniacally on the floor, bites, and kicks. Saying "no" firmly and taking attention away (like a mini time out) only seems to bring on more giggles. Occasionally he'll have a tearful moment, only to break into writhing giggling again. I'm pretty sure he doesn't understand that these behaviors are not funny. Sometimes the only thing we can do is sing or make faces to distract him from his agenda of destruction so that he'll allow us to clothe him.

I don't think he puts on any of these performances at school, because they usually talk about how wonderful and angelic he is. I'm grateful for this, because we love his school and wouldn't want him kicked out. I really hope this is just a phase.

Quinn's new haircut

2009-07-16T19:44:00.001-07:00

Update: bits and pieces from the weekend

2009-07-12T22:10:00.000-07:00

- We gave Quinn a haircut tonight. Last haircut was at least two months ago. Now I remember why we kept putting it off. We tried to make it fun. We set him up in a chair with a movie and chocolate chips. We sang, we said comforting things, we made silly faces. But Quinn was traumatized anyway, and let us know with his wounded look, sobs, and screams. Makes me want to let him grow dreads. But the haircut was much needed, and he looks pretty cute. I'll post a pic tomorrow.
- Today Quinn experienced two of his favorite things: trains and dogs. It seems he likes these things better from afar. He cried on the commuter train and got totally overwhelmed and anxious at the dog park.
- I'm trying to walk more. In honor of my upcoming birthday, my body seems to be storing extra pounds. I really don't enjoy exercise, though walking is okay. Anyway, I was wiped out last night, but just before sunset I convinced myself to put on my sneakers and get outside. I was greeted by an unusually warm night (nights here, even in summer, tend to be brisk), and three rainbows. I'm taking it as a sign that it's worth it to get out, even when I'm tired.
- Quinn blew bubbles for the first time in the bath tonight. It was awesome. He's been working on blowing in speech therapy. He was really proud of himself, but couldn't repeat the feat.
- Quinn is signing a lot (same few signs - more, help, open), but still not really talking. I think he might have said "mama" today. I'm still not sure though if he was babbling or if he really meant it. That's what I'd like him to give me for my birthday.
- I'm really p*@#%! that we need to go through a three-hour evaluation to get the "status two" designation (e.g. continuing services from the Regional Center for people over age 3, which will include case management, respite, and other stuff). Quinn has a file at least a foot high, and has been evaluated by people with enough degrees to start their own university.
- I wish kindly strangers would stop asking my basically non-verbal child questions. It's weird and awkward for all involved. I guess it's time to order these cards (scroll down).
- What are you all doing for Fragile X Awareness Day, July 22?

Quinn & Zac at my Dad's apartment in SF

2009-07-05T12:01:00.000-07:00

A wonderful present

2009-07-02T20:00:00.001-07:00

Last night I came home to a new laptop, with which I am writing this post! My old computer was slow, possibly virus ridden, and very old and being a desktop, not at all portable. I've been looking for a computer on and off for many months, but felt overwhelmed by the choices and expense. So coming home to a fast, thin, light awesome laptop with a picture of us on the desktop is like a dream come true. Thank you so much, my wonderful husband!

Life is good on the bus

2009-07-02T19:00:00.000-07:00

Quinn's awesome school is a on a campus with lots of programs for folks with developmental disabilities. Every morning when we drop him off, vans are pulling in full of people going to day activities on the campus. As we've noted on this blog before, one thing Quinn has in common with many boy toddlers his age (we are always very happy to be "normal" - a way to bond with other parents) is his love of transportation vehicles. So when he sees the vans dropping people off, he is VERY excited.

The other day I was dropping him, which I don't usually get to do because I'm often off to work before his school begins at 9. But the other day I had the pleasure of doing the drop off. As soon as we got out of the car, one of these vans pulled up, and Quinn, absolutely delighted, made joyful utterances and started waving. On this particular day, all of the other people on the van, the adults with developmental disabilities, started waving, too.

For a moment, Quinn and these adults were looking very happy as they seemed to take one another in. And in that moment, I almost heard a voice (not really - don't worry no voice-hearing going on here) say, "Don't worry, Mom. Quinn is going to go to a campus like this one someday when he's big, and he will love it! He'll hang out with friends, swim, do art, and learn job skills. And he'll wave at cute little boys."

I have to admit, sometimes when I see the adults with developmental disabilities at this campus, I feel a pang of anxiety or grief, thinking, "Will Quinn be like that when he is grown-up?" And I know he will. I just do.

I still think he will be "like that". But for some reason on that day, I realized that is totally ok. I think he he will have an enriching, fun, happy life. It may not be the life I expected, but I think he will be absolutely fine with it, and I will be happy seeing him happy, riding the van to wherever he may be going.

The Roller Coaster Goes On

2009-07-02T12:51:00.000-07:00

I'm feeling pretty good today, if somewhat jittery. Quinn went to sleep later last night, but still woke up at 5 am! Not fair! My cough is still here, but it doesn't hurt my pulled muscle as much. I'm still finding relatively small things kinda overwhelming.

I was very proud of the surprise I got for Sarah yesterday. I'll let her talk about it if she wants to.

Up and Down Day

2009-06-26T20:30:00.000-07:00

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

2009-06-25T10:30:00.000-07:00

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

2009-06-24T12:52:00.000-07:00

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

2009-06-22T23:02:00.001-07:00

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?

2009-06-22T20:07:00.000-07:00

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

2009-06-22T00:32:00.000-07:00

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!

2009-06-21T08:55:00.000-07:00

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

2009-06-20T11:23:00.000-07:00

Quinn at Children's Fairyland in Oakland

2009-06-20T11:19:00.000-07:00

Life on Sertraline (generic Zoloft)

2009-06-17T11:19:00.000-07:00

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

2009-06-15T22:16:00.000-07:00

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

2009-06-15T07:51:00.000-07:00

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

2009-06-08T08:02:00.000-07:00

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

2009-06-07T21:04:00.000-07:00

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

2009-06-07T20:00:00.001-07:00

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

2009-06-06T22:07:00.000-07:00

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

2009-06-06T10:22:00.000-07:00

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

2009-06-04T14:59:00.000-07:00

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

2009-06-03T21:41:00.000-07:00

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

2009-06-03T11:35:00.000-07:00

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!

2009-06-03T10:02:00.000-07:00

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

2009-06-01T22:14:00.000-07:00

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.

Quinn built this all by himself!

2009-05-29T08:45:00.001-07:00

Quinn re-enacts a scene from "Tales of a Fourth Grade Nothing"

2009-05-29T08:41:00.000-07:00

In case you're not familiar with the book, in it, the main character, a 9-year-old, thinks she is being unkind to her annoying 2-year-old brother when she gives him a box of tissues for his birthday rather than a real present. But the little boy is delighted and declares the tissues the best present he received!

Depression

2009-05-26T06:15:00.000-07:00

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.

Mommy & Quinn at the beach

2009-05-23T09:13:00.000-07:00

Ahh, a much needed vacation. A change of context does wonders for the
harried mind.

Status updates

2009-05-20T20:50:00.000-07:00

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.

Bye-bye high chair!

2009-05-17T13:18:00.001-07:00

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

2009-05-17T06:18:00.000-07:00

Quinn decides to put some clothes in the dryer

2009-05-15T13:54:00.001-07:00

Quinn chases the garbage truck down the street

2009-05-15T13:47:00.001-07:00

Where's Mommy? I want to wish her a happy Mother's Day!

2009-05-10T21:19:00.001-07:00

Happy Mother's Day, Sarah. Daddy and I love you so much.

One of the many reasons I love being a mother

2009-05-10T19:54:00.000-07:00

is because of the sweet and funny things I overhear.

Right now, my husband and son are in the bathroom adjacent to our office. Quinn is taking his bath. Zac says "Quack, quack, quack!" Then Quinn says very merrily, "AAH! AAH! AAH!". This happens again and again. Quinn only started imitating sounds in this way very recently.

Quinn got a fever today (which he's since recovered from), and I still have a yucky cough from last week. Yesterday, my friend's child, who is just a few months older than Quinn, answered the phone when I called my friend's house. I was shocked that a child that age could answer a phone. I had assumed (really) that some other child was visiting her house for the day.

I am so grateful for the Quack Quack Quack moments that remind me to enjoy this time.

We're getting a house (99% sure)

2009-05-05T19:09:00.001-07:00

The seller agreed to lower the price. Not by as much as we were hoping
for. But enough to make it make sense and be a good value and be
competitive with comparable houses. Lots of work to do. ZOMG WE'RE
BUYING A FRICKIN' HOUSE!!!!!!!!!!

Happy Quinn!

2009-04-23T20:12:00.000-07:00

Someone gave Quinn the happy juice tonight!

Sleep disorders

2009-04-19T02:32:00.000-07:00

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.

Quinn's shaded outdoor playland

2009-04-18T12:18:00.000-07:00

Captain Quinn steers the ship

2009-04-18T10:58:00.000-07:00

Children needed for cognitive research

2009-04-16T14:16:00.000-07:00

My friend, Dr. Silvia Bunge, needs children for a research project involving children's cognition. They've got some very promising preliminary results (including significant increases in IQ after an 8-week after school program), but need to recruit more children. Here's the link to their lab. It's in Berkeley, CA on the UC Berkeley campus. Quinn's too young to do this, but I thought other readers might have kids who would fit their needs.

Disclosure: I might be working with the Bunge Lab, so I have an incentive to be nice to them.

Happy Easter!

2009-04-12T11:59:00.001-07:00

Quinn hunts for eggs at our neighbor's annual egg hunt. Quinn didn't
quite get the whole "collection" concept and would often re-hide the
eggs after finding them. But he seemed to have fun and liked the
treats inside. He quickly got overwhelmed by all the people though.

Quinn attempts to climb into the otter enclosure

2009-04-11T20:40:00.001-07:00

We went to the Oakland Zoo today. Quinn pointed to many of the
animals. He liked the otters a lot, or maybe just wanted to play in
their water. Here he is casting aside his drink and attempting to
scale the fence. We are happy to report he was unsuccessful in the
attempt.

He has pooped...

2009-04-10T04:15:00.001-07:00

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

No, he wasn't asleep

2009-04-10T03:49:00.001-07:00

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

2009-04-10T03:00:00.001-07:00

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.