Wi Fit party helps dystonia?

Frankly before I went to the Wi Fit party, I regarded Wii Fit as a bit of joke.  My husband showed me the Wii Fit parody.   "Wii Fit...a little plastic thing you stand on" "Don't want to invest $3.19 for a hula hoop,  why not pick up a Wii for just $300, and enjoy the same fun.. without that annoying plastic hoop?"

But hey, if Nintendo and City Mama offers me free food and drinks and a moms night out, I'm game..literally.   I bought a Wii from going to her last Nintendo Wii party. 

The party started out a bit nervously as the Nintendo folks demonstrated the body check.  Okay they picked the skinniest mom in the room whose BMI was listed as underweight, but looking around, I thought few would volunteer for that part. 

Then it was on to various "Balance Games" We started with the ball game.  It sounds simple enough.  You shift your weight around to tilt a surface and move a ball into a hole.  Then you get more balls and more holes.  I could see it would improve my balance, because I was concentrating on moving the ball rather than on what I was doing with my body.  I did quite well in that game.  Okay not greatest game ever, but considering that I was improving my balance, it was not a bad way to do it.

The Wii Fit also liked how I performed a yoga position. Now that was a joke, because due to my disability, dystonia, I kept jerking and the little bubble that showed your center of balance kept shifting.  Still I got 3 out of 4 stars.  I don't do much yoga in real life due to my jerking, and I don't think I'll be doing Wii Fit Yoga again. 

I enjoyed more a silly game where you're a Mii (a Wii version of a person) dressed in a penguin suit and you're on a iceberg and balance from side to side and catch fish.

I also enjoyed Slalom where like in real life you have to shift your weight from side to side to move your skiis. I was atrocious and big red FAILED showed on the screen.  For the ski long jump if you fail your Mii tumbles over and over in a big snowball.

I pondered whether the decision to keep the decidedly Japanese culture of winners and losers was a thought-out marketing decision, or simply a direct translation of the game from Japan as I watched women down Odwalla shots.  Now Odwalla makes you feel good.

I decided to play a "Fitness game." or "Step on the white thing"
according to the parody.  I know some geeks who use Dance Dance Revolution as exercise.  As the parody suggests, it was far slower which is good for a klutz like me, but also far less interesting.  The characters were all Miis and the music unvarying Ninetozak.  If you've played Donkey Kong or any Mario game, you've heard this music a thousand times.  I doubt I'd get up off the couch to step on the white thing.

I also glimpsed at the jogging game with its atrocious graphics, but I couldn't watch it for long.  According to Beth, it takes your heartbeat, but so does a cheap heart monitor.  Another mom commented "I hate annoying guy waving at you" [when you jog]

I still didn't like the hula hoop.  I never could hula as a kid and the
game mechanics proved even more awkward than doing it with a real hoop.

Proper body balance improves health and longevity and I used to literally lose my balance and fall down.  I now have a service dog who helps me with balance. 

I got home and talked it over with my husband.  He said the Wii Fi will be about $90.  That's cheaper than a physical therapy appointment or a course at the chiropractor.  If the Wii Fit does improve my balance, it will be worth it. 

In terms of cardiovascular exercise, the Wii Fit pales in comparison to the shiny metal of standard gym equipment, but then so many Americans need to just move every day.  Maybe moving on a white plastic thing as part of a game will help.

My new life with Hermione, my service dog

Sorry I've not updated in so long. My whole life changed the day before Valentine's Day when I received my new partner service dog Hermione. She brings magic into my life everyday. We go out everyday by ourselves and I walk faster, because I don't have two kids in tow and because Hermione matches my steps, so if I stumble I have an area where I know to go.

I hadn't realized how much subconsciously I avoided going out without my adorable kids. But now I have a pretty dog. People smile at me and open doors for me and Hermione instead of getting impatient with me for being slow or dropping things or worse make rude remarks as if I can't hear. Hermione also opens my fridge door, pushes push plates and picks things up for me.

I thought I was getting a dog to help me. The organization I got her from is called Canine Companions for Independence (CCI). I've also thought of myself as an independent person and spent the first few days I was at CCI wondering if I belonged there with folks in wheelchairs. Then I got really discouraged as my spatial issues became profoundly clear. Then I actually worked on them instead of spending that time kicking myself for not for example understanding how a door opens without actually seeing it open.

One of my LJ friends put it best I've spent most of my life trying to "pretend I was a defective normal person instead of a "ok person with a disability." As one of my classmates said to me "I embrace my limitations rather than fighting them so I can do more." I am still exhausted from my training and my increased physical activity of exercising a dog and walking more. But my whole outlook has changed. I don't fight to get by. I try to figure out how to adapt conditions to improve my life with my disability. Already I'm doing more. I can't wait to see what future brings.

I have never been so thrilled to receive diapers

Little T's preschool just sent home his diapers and wipes today. I've never been so thrilled to receive diapers in my entire life. It means he's now totally potty trained at preschool.

Potty training at home remains literally a balancing act. Unfortunately my dystonia and his one-handedness clash. He needs support to stand up and lean forward which is extremely hard on my hands and arms, so at the moment he can only go with my husband. Plus my jerking unsettles him. So right now he just goes when my husband is here.

Shame on you, Sony!

Dear Sony,
Yes it's true I broke my hard disk. Yes, it's true I didn't make recovery disks as you instructed me to do.

However I broke my hard disk because I thwacked it due to my disability. I don't expect you to pay for that. However I don't understand why you place your hard disk right on the top right edge. You could have placed your tiny hard disk in a location a lot less likely to be damaged. I've had 4 laptops in my time and hit each one of them and never broke a hard disk before including the first one ever invented.

But your worst sin is charging me almost $50 for recovery disks that cost you less than $5 to make and ship to me. It is usurious. If you charged me a reasonable price, I would not complain. And you have me up a creek. It's either cough up $50 or buy another laptop.

Shame on you Sony for taking advantage of me in my time of need.

Shame, shame Sony!

Your rival HP sent my husband recovery DVDs for free. It's true that the recovery program didn't work and HP only allows you to make one copy. Even so, it illustrates how little recovery disks cost.

I was a big fan of your VAIO laptops, but after this experience I will probably NEVER buy another Sony laptop.

Sony, you have gained $50, and lost thousands and thousands of dollars from me. I purchase laptops every few years for the rest of my life, which I hope will last for several more decades.

Your practice of charging insane amounts for recovery disks is not only shameful, but also bad business.

Stupid and shameful Sony!

Experiments with an automatic soap dispenser

One of my learnings for the past year has been that what might seem frippery or luxury to some may actually help my hands.

So it was that yesterday I found myself in Brookstone, a store for those in general who have more money than they know what to do with. Example: digital weather display and clock: $60

I bought a stainless steel soap automatic dispenser. As with all things Brookstone, it was well made, but far more expensive than it ought to be. $40

So far I'm still learning the process of using it. Too far under the sensor and I jerk and the soap plops on the counter instead of my hand. Or I manage not to jerk and receive a large dollop of soap. Today I discovered you have to lightly brush the sensor and then it dispenses slightly more than I'd like, but not the huge splat of yesterday. I *think* once I learn it will save me points, but I need a few more days to be sure.

Pushing down on the soap dispenser is a small amount of points, but one I do all day long as the mom of two small children, one of whom has fragile health. For me, bar soap has been an adventure, a little fun in my salad days when I had more time to jerk around. Picture me jerking a slippery object and watching it slide around the sink and on bad days across the room.

Dystonia on a treadmill

Treadmills have always scared me. I'm afraid I'll fall or stumble and hurt myself. Yesterday I learned that my fear was rational.

I wanted to try the treadmill, because I thought I'd be walking my service dog, so I need to practice running and walking. It turned out to be a BAD IDEA. The treadmill has a lot of free space, so you have to think about where your body is in relation to space and time. Whoever said that my dystonia only affects my upper body should be forced to endure what I did. The effects on my lower body are subtle and very stressed induced.

I tried to get the treadmill up to what I though was a usual pace and I started running flat footed. I tried to stop running that way and ran normally for a few paces and then my right knee locked up. It wouldn't unlock until I went back to a walk. I've noticed that my right knee very occasionally locks up at night since I was little. My parents used to call it a charlie horse. Now that I think about it, it would lock up after experiencing a particular type of emotional stress - hard to put into words, but unresolved arguing. In this case I was arguing with my body and losing.

So I walked. Then I started to get a bit tired and I swayed to the left as I sometimes do when tired. It used to result in me falling, but now I have better one-legged balance thanks to my son's PT, so I recovered.

I did 15 minutes as I promised myself I'd do. But I'm done with treadmills. I can walk or run with my dog, but no treadmill will be involved. My right knee still hurts slightly.

I do much better on the elliptical. There is no unmapped space on the Precor. Your feet go into these foot wells. Your hands go onto the handlebars. My body knows what it should be doing. I get a much better workout on the elliptical, because my body is not fighting against its dystonia.

We hold it within ourselves to be good family

My package for my parents has spent Christmas eve sitting in the UPS warehouse about 40 miles from our house, so alas not in time for Christmas. I ordered in on Dec 18, so UPS does not get my Christmas cheer this year. But it does mean we will visit them again once the package arrives, so I guess it is good cheer for my parents.

We did avert one Christmas crisis by buying the last two Christmas puddings at Andronico's. Otherwise my mom would make it herself which takes at least 7 hours. I kid you not.

But the kids are really excited this year mostly about spending time with extended family and that's what Christmas is about for me. A friend who's had a particularly hard year this year blogged "We hold it within ourselves to be good family." And that's what I strive for.

Personally I don't care if we have Christmas pudding or not, but it matters a lot to my dad. So after a lunch with my brother's in-laws, we drove to Andronico's. My son was already fast asleep and my daughter who normally loves shopping refused to leave the car. I thought about whether to spend the wrist points to get out of the car and carry those puddings. My husband offered to do it. I briefly wished my service dog was already here. But I decided that getting the right pudding was worth it and my husband doesn't know about Christmas pudding. So off I went. I returned and discovered they had overcharged us. My husband just said he'd go back. He understood the cost to me to go back again.

My mom only vaguely understands my daily pain and my dad not all. My service dog may teach them. I have no idea. But I've decided it doesn't matter. My children don't understand the costs of the things I do except in vague terms. Sometimes we talk about wrist points. And I don't really want them to. I try to be good family.

Lifechanging news, exciting news and commenting

My first and best news is that I will getting my service dog in February. I was invited to Team Training at Canine Companions for Independence (CCI). It's the best holiday gift I've ever received!! I feel incredibly excited and blessed.

Around the New Year CCI will send me an enormous binder chock full of info basically everything I'm expected to learn in Team Training, so I expect to blog more about this. Not the contents themselves since that belongs to CCI, but rather my reactions to it all. I should note that CCI has a pretty strict policy against not revealing the name of my dog or identifying details about my dog until graduation which will also be my sixth wedding anniversary. My human partner has graciously agreed to share the day with my new dog partner.

I do like the CCI logo a lot, but as it involves a person in a wheelchair, it doesn't seem quite appropriate to put in my blog as I'm not in a wheelchair. I know it's the universal symbol for disabled or special needs which I definitely claim. And I even have a disabled parking placard. Still I'm at a loss what picture to put for this post, since I don't know what my future partner will look like. Oh well.

Not life changing, but exciting Peter Jackson will be producing The Hobbit in 2009 in a two part series.
It was my extended family tradition to watch Lord of the Rings each Christmas.

Of less importance to me personally, but of import to readers of this blog, you can comment now using Open ID.

Gratitude

I'm happy because I kept Louie engaged 95% of the time yesterday during our lesson and he only tripped twice even though we were walking and we had a side walker too.

I'm thrilled that Little T is alive. A friend just wrote that yesterday was Infant Loss Day. I have no idea how or why he lived that first day but I'm so glad he's still here.

I'm pleased that the reason my butt still hurts is that the muscles are still tight and pinching a nerve. A good hard massage from my chiropractor Dr. Deb helped and I hope it will heal over time.

More shiny - in fridge form

We need a new fridge. Our current one hurts my wrists each and every time I open it because it is broken and because the shape of the handles causes my hands to cramp painfully as I grip them. Our current fridge is white not stainless steel. However it's easier to see the handles in this color

A repair person fixed it so it's less broken but still painful and says the handles can't be replaced. It's been this way since we moved in almost six years ago but a new fridge that would actually work for me has 4 doors which is more than I want to pay a fridge. Yes I'm cheap frugal.

Here's the shiny fridge I want to buy. C is currently testing to see if its slightly larger depth will interfere with kitchen traffic. He's pulled our current fridge out by 3 inches. So far I've noticed no difference. C notices slightly but then he moved the fridge.

4 doors good. AFAIK this is the only fridge with 4 doors. There are french door fridges but these have doors on the bottom that I find hard to pull out. The handles are still not quite what I would like as I'd prefer more curved handles but I think the greatly decreased weight of the four doors (plus actually having a fridge that's properly weighted) will
help a lot.

I'd really prefer more curved handles like these. They seem easier to grip. But that's not an option with the quattro fridge.

Who appointed you to define what I need?

As you may know I'm on the waiting list for a service dog from Canine Companions for Independence. I thought I was just getting a service dog but I've discovered I've actually joined an entire pack of warm funny terribly earnest and responsible community of CCI people not unlike the dogs themselves I suppose. Anyway blogging and LJ intersects with this community and one of the CCI pack who has a hearing dog included in her LJ this link: Seek Geo asks: "Do deafies need hearing dogs?"


Never being afraid to share my opinion with those who want to read it. I share it here. I do not share it with Seek Geo since I don't think he was asking me but other deafies. I have minor auditory processing issues due to a scar in one ear drum but I think that still makes me a hearie since I can hear well enough not to need a hearing dog or any other hearing assistance device.

I am amused and puzzled and pained by the inherent contradictions in the Seek Geo movie/discussion.

First of all it was kind of Seek Geo to include captions or I wouldn't have been able to understand the movie at all. So on some level Seek Geo acknowledges there's a wide world out there that doesn't use his primary language.

Then I was really really mystified after Karen wrote how her hearing dog saved her life by alerting her to a forklift that was backing up into her and she couldn't hear (obviously) and couldn't see because her back was turned to it. Seek Geo wrote in response something like "Well it was just the one time." To me that speaks of a deep level of denial.

Seek Geo also pains me. I guess in some ways I used to take Seek Geo's attitude that I'm no different than anyone else. My wrists are trashed as a result of it and I have more needs now.

I am all for "I can do everything that an able-bodied person can... just in a different way." I can definitely understand dislike of the term disabled. I used to kinda hate it but now I've come to terms with "special needs". I have special needs whether it be a dog or drugs or more rest or equipment or whatever. That's just not going to change. Even if my jerking stops and my balance improves and my wrists get better. It will be due to my special needs being fulfilled.

I feel alienated from Seek Geo and not because he's deaf but because I feel he comes from the attitude of my parents' generation. "Don't talk about how your needs are different or special even if it means that if your needs aren't accommodated you can't fully participate in society or you may even endanger yourself. Disabled people are in wheelchairs or blind or mentally retarded. Otherwise you are not disabled. Almost getting killed by a forklift because you missed something. Well it's not because you have needs that weren't met. It's because you should have been more careful. You don't need a dog to alert you. You don't need anything except what I say you need. So stop whining like a baby and just take your lumps."

More riding

Yesterday I trotted almost the entire time. Something I would not have thought possible a few weeks ago. I now have riding pants which helps a lot.

Louie Louie my horse would hang his head down sometimes both to get a bit of rest and to test how tired I was getting. If I shifted my weight forward because I couldn't handle the way his weight shifted then he stopped but most of the time I just kept on going. Louie also likes slowing down at the gate and so I had to remind him that no we weren't stopping there.

I'm working on sitting up which I don't do a lot of the time and putting my shoulders back. It made my shoulders quite sore. My legs are long most of the time and my back is supple and so are my hands.

I find each time I ride now different muscles get sore. My instructor says it's because I'm learning.

I find also we're shifting into a new balance where I have more confidence so I'm leading Louie around. I am better about shifting my balance when we turn so he doesn't slow down when we turn. He can anticipate that I am asking him to turn as I'm turning him more by shifting my weight than pulling his reins.

My working partnership with my horse

I'm in a therapeutic riding class with two other women with special needs (and a third who hasn't been showing up lately so I have a lot less to say about her.) These two women ride these other two horses and they work wonderfully together. These horses wouldn't work for me. These women are paraplegic so they need horses that are very steady and slow. They literally need to be hoisted onto the horse with three other people in order to mount. The horse needs to be lined up exactly so sometimes the horse has to go through the mounting blocks several times. The horse I ride tolerates this but he's not great at waiting without a rider on his back. With a rider he'll wait until the cows come home but until he gets a rider he's a bit impatient waiting for someone to please ride him. He need to be walked around and around and around. Other horses don't mind just standing there waiting. In fact they seem to rather enjoy it.

I can mount a horse pretty quickly. I need a horse that can trot and later canter. I also need a horse that is responsive but yet also gives me feedback on how I'm doing. I have a movement disorder so I sometimes jerk so I need a horse that doesn't mind that. Another horse is responsive but also twitches every time I jerk. It makes me nervous so that horse is not a good match.

The horse I'm riding now is a great match for me. After a few times he got to understand what my jerks were and ignored them. As he ignored them I relaxed more and jerked less. I tend to grip too tightly and this horse slows down in response. Other horses pull back with their heads. This is what horses "should do" as pulling too hard does hurt them. And it's a great response for someone else but for me it just leads to a negative feedback loop where I pull tighter. When I loosened my grip and moved my reins with the horse the horse went faster. It taught me fairly quickly to have softer hands and bend my elbows. My instructor had been telling me for months and I'd been steadily improving but there's nothing like direct feedback.

I'm sitting on a blanket so the horse is in close contact with me. He's sensitive to how tired I'm getting or how nervous I feel and will slow down if he feels those things. The horse is "not supposed" to do this. He's "supposed" to stop or slow down when I say so but it worked really well for me when I was learning to trot. I tend to push myself too much. He started out trotting slower which was less comfortable for him but he trots faster now as I can handle it better. This gives me a great sense of security and trust in the horse. I feel more confident. And I've learned a lot faster.

For these two other women this horse wouldn't be a great match as they have little feeling in their lower body and so can not respond to the horse in that area. This horse also tends to trip sometimes quite badly when he's not paying attention. It's never been more than a minor annoyance to me as I can feel when he's about to trip and compensate but for these women they could fall off. And in fact the tripping also lets me know that I need to engage him more and make him use his shoulders which is another weakness I have.

In the first class where I could trot for longer distances I encounted this problem with this other horse that this woman doesn't usually ride. This mare doesn't like my horse a gelding who apparently herds mares in his free time. If my horse got too close then her horse would stop. Did this woman or anyone yell at me and tell me I needed to control my horse better? Or did someone tell this woman who can't kick the horse that she should never allow her horse to stop. Of course not. Someone simply gently pointed out the problem to me. It took me a few tries to get the distance right and learn how to control my horse at a faster speed but we worked it out.

My instructor told me this horse used to ride with a girl who had brain cancer and he took care of her in much the same way. Even though fortunately I don't have brain cancer we're similar enough in the way we ride that he understands what I need.

This horse has strengths and weakness and so do I. This horse is a great match for me and a wonderful horse in the program. But I would not recommend this horse to everyone. For another person with different needs this horse would be absolutely terrible. For me he's absolutely wonderful. He has taught me so much in the few weeks I've ridden him than I've learned from riding other horses in the past 9 months. I really love this horse. He was in a demonstration show with another rider and I felt so extremely proud of him.

I hope this horse and I will be riding together for a while. But if I ride another horse I will have to learn to ride him or her and she or he will have to learn to be my rider. Some horses will be a great match and some won't.

Becoming more like House MD

I want to live in the world of House MD where most medical mysteries are solved in an hour. I'd like to think of myself as Cameron. Though to be honest I'm more like Foreman. I'm a scrappy minority. I really do care but in a medical crisis I'm very detached. My exploits in high risk medical deduction and bizarre medical conditions are confined to my son. But that's enough for me.

But sadly my life resembles House more than any of the other doctors. I deal with constant pain every day although it's in my wrists and not my leg. I took Vicodin for a few months when I broke my toe. But I'm off it now. House says "antidepressants make me fuzzy." Vicodin makes me fuzzy.

But without Vicodin, it seems I must add a new way to identify myself as House. I must use a cane. I doubt I'll go for a cane with flames as House did. But my cane will be cool in some way. I'll show pictures when I've chosen it. Like House, I need a cane to help prevent myself from falling.

Prekids I sprained my ankle about once a year and limped around on crutches or a cane for several months. Annoying but manageable. My neurologists told me that "hypermobile ankles" are part of my rare movement disorder, myoclonic dystonia. I just figured it was something I was stuck with like the jerking.

Then my son started receiving regular physical therapy and then finally walking at 2 years old. And I noticed that like me, my son had moments of great balance and then he'd suddenly fall down. At first falling down involved "a lot of head hits ground". Any sort of hit on the head resulted in massive egg bruises on his forehead due to low platelets. His hematology doctor said he was okay falling down walking, but if he fell from any height he ran the risk of brain bleed. Needless to say I watched him very very carefully.

I developed a sort of safe distance to watch. If I hovered over him he got annoyed. I and his nanny noticed he fell more when tired. I also noticed he fell when distracted or when moving from one surface to another. That's exactly how I stumble and sprain my ankle.

Prekids I used to hike on rough terrain and occasionally ski. Never a sprained ankle. I was being careful. I sprained my ankle or torn liagments

• stepping down from my house to my garage
  
• walking onto fake rocks near the Stanford barn without noticing
• tripping over a gouge in the sidewalk shortly after receiving a flu shot
• stumbling while pregnant - okay I think being clumsy comes with being pregnant
  

I broke my toe tripping over my daughter while my ankle was still recovering from a sprain.
I stumble a lot less with my son, because I have to be a lot more conscious of where he's going. I have never once stumbled while holding my kids.

But Little T's rapidly moving out of the "must watch with constant vigilance or he will hurt himself" stage. His platelets are normal. He has perfected the trot. My body already knows I need to be less careful. Today I stumbled and knocked against him and he merely swayed a little. A few months ago he would have fallen on his head. I was so proud of him. And sad that he needs me less in that physical way.

So I need something new to watch out for. A new baby would solve the issue but has other costs. We're fine with two kids. A cane will do. It will "provide additional sensory input."

I'm on the waiting list for a service dog from Canine Companions for Independence. So at some point I will have another creature to look after. One that I will always need to keep track of. Then I can ditch the cane and I will be less like House again. Being a big fan of House, I know that House kept a dog for a couple episodes. A very poorly behaved dog that chewed up everything even his Vicodin. House could probably use a service dog, but I'm not sure which organization would take him.

Thanks for Autism Awareness month

To the people and parents living with autism, thank you for the gifts you've given me and my son!

My son and I don't have autism. But we're part of the special community lovingly called special needs. Your battles have give me several gifts. And for Autism Awareness month, I wanted to thank you and all those who have fought alongside me.

1. Thank you for showing the world that just because you move or act differently from most of the world, you are still a human being with intelligence and feelings.

I have a movement disorder. When I was a young child, I was diagnosed as mentally retarded by top neurologists. My parents knew otherwise. Top neurologists told them "You're just overachievers who can't accept your child as she is." Ironically my mom grew up with a sister who had Down Syndrome. So she knew a face of mental retardation. And gazing into my eyes, she knew that I was smart and told me so.

At school, kids regularly called me "stupid" and "retard" and "spastic". Only two teachers told me I was smart. I knew I was smart, but I also knew I perceived the world differently. It was not until I was 16 that a neurologist said "Of course you're intelligent. You have a movement disorder (a new exciting field at the time)." It wasn't until high school that two kids told me I was smart and treated me that way. My dad just said "Wait until college." Finally in college, everyone treated me as intelligent. It was a novel experience.

But it's a different world for my son. Lying in the NICU, extremely sick, I knew my son was intelligent and warm. He made a real effort to gaze into my eyes, though I could tell he was a huge effort for him to focus through the extreme pain. The day he was born, his nurse said "He's so engaging. He's a smart one." From that day, various nurses, doctors and therapists have all said similar things. He has multiple delays including speech, gross motor and fine motor.

He has come a long way, but no, he does not move or talk like a typical child. He also wears a bright red wrist brace and his left arm usually hangs stiff at an awkward angle. But he lives in a different world than I did. I'm amazed by my son's confidence and ability to engage people. Yesterday in the park, he sat with two boys prolly 8 and 10 and played in the sand right next to them. Everyone seemed comfortable. That was something I never had. Thank you boys, and thank you parents of those boys. And thanks to all those who worked so hard to change the world to make this possible.

2. Thank you for teaching me and the rest of the world how to better talk about disabilities. Thanks for standing up loud and proud. My parents came from the old school where we didn't talk about my disability. My parents still don't use that word. They call it my "shake" (I don't shake). I know it comes from a place of love. A place where admitting disability means shame. A place where they want me to live a normal a life as possible. I knew this and I never told my parents about the teasing. It was a pain I kept to myself. And I have greatly exceeded the doctors' predictions, so my parents did many things right. I know if they were parenting today, they would do things differently. They treat my son differently. We live in a different world.

3. Thank for pointing out that there is both joy and pain in having a child with life-long disabilities. You'd think that I'd have an easier time of it having an unrelated disability. But I struggle sometimes to tell the truth. I struggle because like my parents, I want so much for folks to see the joy, the intelligence, the incredible resilience of my son. He has taught me so much. But he also has his challenges. I want to say like any other child, because every child has challenges. But his challenges loom larger and are more serious than most children.

4. Thank you for sharing. Thanks to you, I have learned so many things about myself and my son. I have learned about a lot different resources in Silicon Valley. Thanks to you, my son has lots of therapy that has drastically improved his life. I take therapeutic riding which has improved my balance and wrist movement. I'm also on the waiting list for a service dog. I have learned about the world of sensory issues which many kids on the autism spectrum deal with as well as my son and me.

5. Thank you for the gift of hope and showing me a path to greater freedom. I've had hope for my son since the day he was born. But before I met you, I thought I was the way I was. I could not change in my late thirties. My wrists were degenerating every day. I kept spraining my ankle every year.

6. Thanks for teaching me a whole new vocabulary and different ways of perceiving the world. I learned these words for my son, but they have actually helped me a lot more. Thanks to you, I've been able to use the right words to talk about my issues. Before I stumbled around literally and figuratively and therapists said "We can't help you." Now they offer me exercises and suggestions. I have noticed a small difference. I jerk a little less. I hurt myself less by thwacking my hand on things. I stumble less. I have not fallen down in a month. It's a start to a long journey. I'm so grateful that I know I can change. And I'm still learning about myself. Thank you so much.

Crossposted to Silicon Valley Moms Blog

The kindness of strangers

Yesterday my husband and my two kids tried to go shopping but emerged with literally nothing after 3 stores. My healing broken toe throbbed, and I was starving. The kids were too cranky to be put back in the car, so I hobbled to a noodle place in the same mall. And I discovered I lost my purse. Horror.

I walked back to Target, but I was too worried to think about my toe. I wandered the circuitous route we had taken around Target. I could not find my purse. No one had turned it in.

I hobbled back to the noodle place to eat. I had ordered the wrong noodle dish. I was very sad. Everything was going wrong.

I had to try once more. So we drove to Target. I stood in the long Customer Service line. I felt forlorn, and lost too. I thought about how long it would take to replace my driver's license, credits cards, etc. Time I did not have. I felt very very tired.

Then like a miracle, I saw my purse sitting behind the counter. Thank you kind and honest person who returned my purse with everything inside!!!

I was too tired to cry "Praise be!" but I must have looked very relieved. The person behind the counter said "We paged you." in a kind voice. I believe in miracles and the kindness of strangers.

Silence about Disabilities=Shame

I thought that attitudes towards disabilities were changing. I thought that what made things awkward, about talking my son was that for a time he was not only disabled but in danger of dying. The infant death taboo is a whole other post.

But when I read this article "What's the greatest challenge of having a daughter with autism? Telling people about it. , It makes me sad. As someone who grew up with a movement disorder, it's the same attitude my parents have. My parents occasionally talk about "my shake" at home but they don't use the proper term or say I had a disability. I don't actually shake at all. I jerk. My parents very rarely talk about it to others. Like the writer of this article, they're not ashamed of me but hope they can hide my disability from others. That people will only notice my good qualities.

Unfortunately, the world notices differences. As a child other kids called me names and people stared. They sometimes stare now. I don't have any problems with speech like Paige, but as a child I didn't know the words to defend myself. I grew up feeling ashamed of my disability. My parents occasionally told me they were proud of me, but I interpreted their silence as shame about my disability. Some people felt awkward around me not necessarily because of my disability but because there was this elephant in the room that we never talked about.

Parents think they're protecting their children by not talking about their disabilities, but really they're leaving their child unprepared for the world. For a time I was very angry with my parents.

Now with a son with an unrelated physical disability, I understand the awkward silences. I understand the looks of horror. Sometimes people's eyes fill with tears. Sometimes people spill their life story. It creates odd moments sometimes tender and sometimes so awkward or maudlin I wish I could just leave.

My son has a giant vascular tumor in his left arm that is currently in remission. The details are horrifying. He has multiple delays and his left arm barely moves. But those are his problems. I want people to see my son as the bright, social boy he is, and not his disabilities. However, his arm is a part of him as surely as his sunny smile.

For a time I stumbled around, lost in medical jargon. I didn't have easy words because my son has a disease that no one has heard of. No one understood me. Later, I realized I needed to keep it simple and use easy words like "tumor" "speech delay". Most people don't actually care about the details. They just want to have some understanding of what they see right now.

So I talk about it in a matter of fact way when things come up. For example the other day I was talking with friends about first haircuts. I said I put off cutting my son's hair for far longer than I prolly should have. I was afraid he might go through another round of chemo and steroids, so why cut his hair when it would just fall out? My friends have gotten used to this kind of talk and it's just part of the conversation.

I won't lie. I have lost some friends. Some friends who say "it's too hard." "why do I have to talk about this stuff?" aka my life or simply avoid me. You don't know who can handle the truth and who doesn't. It has surprised me who left and who stayed. But I would rather have friends who truly accept and appreciate me and that includes my son.

Everyone has good days and bad days. My bad days include trips to the ER. My good days include one of the happiest people I know. I wouldn't trade my son for anything. And so every day I model for him what I wish I had when I was growing up.

Bracing myself dorky for my kids

For want of this lace-up ankle brace, I couldn't go on a "leaf walk" with my daughter today, so I'm sitting here typing to you. I sprained my ankle again. A repeated pattern I have.

This time, I was walking out from the flu shot clinic. I felt a little woozy. We were supposed to sit in this crowded room with other families. I think I may have even said out loud "I don't want to stay in this cesspit of germs." I meant no offence to other families. My own family has their own germs. My son has a perpetual cold and is still on a low dose of aspirin with no shots. I'm still nervous from his long period of being immunocompromised.

Anyway, I paid for my sins. We stepped outside and I stumbled on a gouge on the sidewalk probably carved out by the devil of germs.

Yesterday a podiatrist gave me an ankle stress test. This is where he yanks your ankle in a weird position and x-rays it. He told me if the bones split apart I need an operation. Yes, it's painful as it sounds. My bones are okay. I limped back to the exam room.

The podiatrist said I have hyperflexible ankles. Nothing to be done, except physical therapy to strengthen my weak muscles. I also need to wear a lace-up ankle brace when I walk on uneven surfaces, and especially when I go on a hike or play sports. The hyperflexible ankles are supposed to be part of my movement disorder myoclonic dystonic.

Premotherhood, I might have just said the ankle brace is a bit too dorky for me to wear except when actually hiking or sporting, but now I have two young children. In fact prekids, spraining my ankle was just somewhat annoying. I'd hobble around. It was painful, but life went on.

But the past two Halloweens I've not been able to go trick-or-treating with my kids, because I sprained my ankle. So I will actually follow the doc's directions and wear the ankle braces on uneven surfaces. Therefore my ankles will look dorky on many occasions.

Now understand, I'm no fashionista despite the fact that a photo with me in it launched our local paper's fashion section. But there's not being fashionable, and then there's looking like a dork.

I really can't think of a good shoe or fashion accessory to go with this brace. It comes in black (above) and white. They remind me of Victorian boots...sorta. If I were a man, I might try spats but that was the fashion for men not women. What do you think?

Crossposted in Silicon Valley Moms Blog

I can't vote on my own anymore

For the past two elections, for the first time in my voting life, I couldn't vote on my own. I had to ask my husband to help me use the touchscreen. I have a movement disorder, but I can use an ATM touchscreen on my own just fine. However, the touch screen bubbles on the voting machine were placed so close together and the screen was so poorly designed that I could not pick the candidates on my own. Just one of the many flaws of the touch screen voting machines.

Like the rest of the country I was really embarrassed about the voting shenanigans in Florida. In response, the California politicians rushed in these touchscreen machines. Many people don't trust them and rightly so.

More than terrorists hijacking airplanes, I worry about terrorists and other extremists hijacking our voting systems. It is too easy to change the software of our current machines and therefore change people's votes. The code is proprietary. Under current law only certain groups are allowed to test the machines.

Even with no malicious intent involved, computers crash. Software has bugs. You can not count on any computer system to work flawlessly. Yet our current voting system is based on that assumption. The error checking and auditing is laughable. No business would stand for such a system. I used to work for bank systems at credit unions. Believe it or not, yes there's a paper trail for every single transaction you make, even at an ATM. And occasionally the credit union must go back and audit every single transaction. The incumbent Secretary of State only got the machines to produce a paper trail after massive protests. The fact the machines weren't designed with a paper trail to begin with indicates the massive ignorance of the current Secretary of State about technology.

Some folks say "vote absentee." That will not help you. A human will merely use the same machines to put your vote into the same flawed machines.

Before my life as a mom, I help design and deploy the infrastructure of a major broadband ISP. I thought a lot about security issues. I don't believe in government conspiracies. I do believe that my vote counts if the machines work. However I don't trust that computers will always work perfectly.

We're at a crucial time in this whole voting machine process. I actually haven't made up my mind who will get my vote for governor. I still haven't made up my mind about the huge numbers of other ballot initiatives, except I'm pro choice so I'll vote no on 85. I still have to sort through piles of information and actually read the text of all the initiatives. But I do know I'll vote for Debra Bowen for Secretary of State.

One of the first things she did as a rookie congressperson was to pass a bill to put the State Congress online. She also passed a bill to prevent identity theft. Her web site says sensible things about the voting machines. If you care about the integrity of our voting system, I urge you to vote for Debra Bowen.
Crossposted to Silicon Valley Moms Blog

Little T the talker

In the past week Little T has made a huge leap in his speech. He's started having conversations. I admit these conversations are on the level of Koko the gorilla and not typical conversation, but they charm me.
Mama mama, up up
I pick up my 23 pound baby. My wrists hurt.
He grins hugely at me.
Mama mama down.
I let him slide down my leg just the way he likes. He laughs and laughs.
Mama mama up up
I pick him up again. My wrists hurt even more.
Mama, down.
We repeat this game several times, even though my wrists are killing me.
Yes, he's learned "Mama will do whatever you want as long as you talk to her."