Wednesday, December 23, 2009

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

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.

Thursday, December 17, 2009

Advocacy on the ABLE Act - Exciting Update!

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.

Saturday, December 12, 2009

"Da Da!"

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.

Sunday, December 6, 2009

The UC Davis MIND Institute

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.

Friday, November 20, 2009

Survival Garbage Trucks

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.

Tuesday, November 17, 2009

"Mental retardation" vs. "intellectually disabled"

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.

Wednesday, November 11, 2009

Comparisons are just getting weirder and harder all the time

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.

Wednesday, November 4, 2009

Beach Baby



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.
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Tuesday, October 27, 2009

Quinn's new school

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?

Monday, October 19, 2009

Yay! Drinking from a Straw

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.

Sunday, October 11, 2009

How good is the Fragile X Conference?

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.

Monday, September 28, 2009

Ch-ch-ch-change

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.

Tuesday, September 8, 2009

In our new house

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...

Saturday, August 29, 2009

Quinn in the ball pit

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.

Sunday, August 23, 2009

You don't ask, you don't get

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.

Friday, August 21, 2009

Duchess: The Cutest Dog


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!

CutestDogCompetition.com
Vote for my DogSponsored by All American Pet Brands makers of premium dog food.

Friday, August 14, 2009

Go Quinn!

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.

Tuesday, August 4, 2009

One Year After the Diagnosis


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.

Tuesday, July 28, 2009

Roar! Shhh.

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.

Sunday, July 26, 2009

Happy Birthday Sarah!

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

Tuesday, July 21, 2009

July 22 is Fragile X Awareness Day



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

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.

Sunday, July 12, 2009

Update: bits and pieces from the weekend

- 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?

Thursday, July 2, 2009

A wonderful present

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

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

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.

Friday, June 26, 2009

Up and Down Day

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

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

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

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

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

Thursday, June 25, 2009

Back on track

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

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

Wednesday, June 24, 2009

A rose for my yummy

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

Monday, June 22, 2009

Enchanted walks

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

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

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


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

What the hell happened?

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

Losing it

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

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

Sunday, June 21, 2009

Happy Father's Day!


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

Wednesday, June 17, 2009

Life on Sertraline (generic Zoloft)

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

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

Monday, June 15, 2009

All of the budget cuts were passed today

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

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

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

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

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

We're working on a summary of these cuts. Please check www.ArcCalifornia.com soon.
This catastrophe wasn't necessary. The Arc and other community groups relentlessly presented alternatives that would have saved the state just as much money without these terrible results. In the end, Governor Schwarzenegger and these 10 legislators ignored us.

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

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

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

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

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

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

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

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

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

Please call them all and tell them what you think of their votes today.
  • Don't be shy. Our community's future rests on politicians learning that attacking our vulnerable people has consequences. Speak your mind, even if your voice shakes.
  • Don't be deterred if they have represented you well in the past. They didn't represent you today.
  • Don't be bothered if you know and like them. This isn't personal, it's about what's right for people with DD and their families. Friends tell friends when they feel betrayed.
Depending on how much well-deserved criticism they receive in the next few days, there may be some chance to reverse some of the worst cuts, or at least make them temporary. Without a community response, there's no chance, and little chance our community will be able to stand up to more assaults in the future.

The department's next "stakeholder" meeting on the bill language is tomorrow. We and the other groups will be there fighting for our community. It's time once again for you to speak out and hold your representatives accountable.
Please phone all 11 if you're able. Calls have more impact. The email addresses are for people who can't call. The fax numbers are for faxing letters on your group's letterhead.

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

All of their phone numbers are in the 916 area code.
Please call all 11 of them now. And please forward this Action Alert far and wide.
Dwight Stratton
President
The Arc of California

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


From a letter by Greg DeGiere of the ARC California:

Dear Friends:

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

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

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

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

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

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

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

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

Please call now.

Is that stark and clear enough for everyone?

Greg

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

Assemblywoman Noreen Evans, 916-319-2007
Senator Denise Ducheny, 916-651-4040
Assemblyman Bob Blumenfield, 818-904-3840
Senator Mark Leno, 916-651-4003
Senator Alan Lowenthal, 916-651-4027
Assemblyman Jim Nielsen, 916-319-2002
Senator Bob Duttton, 916-651-4031
Senator Mimi Walters, 916-651-4033
Assemblyman Kevin de Leon, 916-319-2045
Assemblyman Roger Niello, 916-319-2005

Monday, June 8, 2009

Action Alert: Draconian CA State Budget Cuts

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

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

Sunday, June 7, 2009

Shopping may never be the same again

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

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

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

Our First IEP

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

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

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

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

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

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

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

Saturday, June 6, 2009

Random observations from 4th day on Sertraline

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

Quinn looking frizzy-haired in the park

Thursday, June 4, 2009

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

Earlier today from Facebook:

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

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

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

Wednesday, June 3, 2009

I'm still on drugs

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

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

Feelin' OK.

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

A Theory on how Sertraline works

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

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

I'm on drugs!

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

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

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

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

Monday, June 1, 2009

Blanket o' Lead

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

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

Friday, May 29, 2009

Quinn built this all by himself!

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

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!

Tuesday, May 26, 2009

Depression

This is not a post about the economy.

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

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

[end iPhone composed portion of post.]

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

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

So, what exactly have I been experiencing?
  • Pleasureable experiences don't leave any lasting impression on my mood
  • I'm easily panicked and overwhelmed by seemingly small tasks that trigger anxiety or insecurity (this has been a problem for me for a long time, but has gotten worse recently).
  • I find I need my pleasures in a very visceral way, the way I imagine a drug user might need them. I need them to ward off other things.
  • I'm very moody and irritable. I'm not used to feelings of rage and helplessness on such a frequent basis.
  • Difficulty understanding what my wife says: I'm saying "what?" and "huh?" a lot. It might be an actual hearing problem. But more likely it's just because I'm escaping to alternate imaginary worlds as much as possible in an effort to get some peace, control, and solace. Or maybe it's because I don't particularly want to hear what she's saying, for fear it will be some request involving Quinn or otherwise disturbing me.
Of course, a lot of this may simply be sleep deprivation: Quinn has woken up at 3:30 am every night for the past 3 nights or so.

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

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

UPDATE: No.