Monday, April 27, 2009

Candied Observation

Observation to daughter: Have you noticed how M&Ms just aren't as well made anymore? About half of them have W's on them now instead of M's.

Daughter: Huh, hadn't noticed.
(pause)
Daughter: Wait...

Saturday, April 25, 2009

Poor People Have a Lot of Paperwork

In the past few years I decided that disabled people have a lot of paperwork. This is an understatement. This year I have decided that poor people have a lot of paperwork. I'm really not sure which paperwork is more, partly because some of it overlaps (vocational rehab, CHIP or Medicaid applications). I guess with the disability paperwork I'm not as disabled as many and don't require home health care, don't have Medicaid yet, etc. Or maybe I am that disabled since I can often only sit up a few hours a day. Suddenly I feel as if I am writing a Margaret Atwood novel, setting down one sentence and then contradicting it. But: there's lots of paperwork.

The upside is the kids are on free school breakfasts and lunches. I worried how they'd handle going in the cafeteria in the morning(especially my son, who gets confused with changes in routine, since my daughter had to veer off to choir practice) the first day and not knowing whom to go sit with. It can be uncomfortable near the end of the school year when everyone has their groups they normally sit with. But they do know friends who have been on the program and have sat with them. My son doesn't remember who he sat with on the first day, only that he likes the person.

My daughter has been accepted to the week-long Girl Scout camp she prefers and for free except the application fee and money for snacks/drinks. We bought a swimsuit a size larger last year for a couple of dollars, and I hope it fits her. I think that's about all she needs unless she outgrows her jeans. Thank goodness for these scholarship programs.

I've been worrying about how we'd afford my daughter moving to a full-size violin this year (our son will inherit her 3/4), and it just occurred to me today they finance instruments or rentals for families who can't otherwise afford them.

The insurance company is illegally forcing us and other families to pay the entire premium, $1250 per month, rather than the 1/3 we owe (government picks up 2/3). I don't even know who to complain to, but I can definitely say that's an extra $1600 (two months of premiums we've had to pay) we don't need out of the bank account right now, especially as we're still waiting on our sizeable tax refund. They said they'll reimburse us 30 days after the government pays them.

There's another camp I wish the kids could participate in through the school, but I don't think there's financial aid. I should call and see.

The appointment with the vocational rehab counselor went well. It seems that she'll be very helpful. Yesterday was a lengthy intake appointment only, so no services yet. Apparently they can probably can help with educational expenses (yay!) including a medical transcription course, which is an ideal occupation for me for a while (I type 90 words per minute). My sister says I can quickly work my way up to being a medical proofreader, which pays more. There are some part-time jobs I wouldn't mind applying for in the meantime, only everything feels so contingent on what my husband does and whether he gets work. If I *knew* what he would be doing and how much he'd be making, that would influence my decision makign greatly, as I would be choosing to greatly stress my body and health for some kinds of jobs that would pay more, though that's contingent on an interview and a lack of disablism.

Aside: it's not nice for kid 1 to yell, "I WON!" when her mother's sleeping. Game of Risk. That was the board game. But I'd say winning like that incurs another risk, aggravating the mama.

Monday, April 20, 2009

"So Sorry, But I Use a Wheelchair..."

It's a tough economy, but how many people would do this job? This reminds me of a place I love, truly isolated.



Visual description: a man works on extremely high power lines high above the trees, in a forested area near a lake. He crawls along the lines on his hands and knees as he fixes them--he reaches them by helicopter. He sits on the helicopter's wing rather than inside it.

Saturday, April 18, 2009

Blogging Against Disablism Day, May 1

Blogging Against Disablism Day, May 1st 2009

Colorful Blogging Against Disablism logo, featuring small people in a grid--one uses a wheelchair and another uses a cane.

Goldfish is once again hosting Blogging Against Disablism Day on May 1. Please let her know if you're participating by adding a comment so she can include your blog in the list on the big day. This is a great opportunity to teach others about disablism and raise awareness about important disability issues--the barriers and discrimination we face every single day.

And please participate! You do not have to have a disability to participate. It would be wonderful to have more participation across the blogosphere. If you're not writing a post, giving a link to Blogging Against Disablism on May 1 is also participation and gives your readers immediate access to all kinds of information about disablism.

Don't forget to revisit Goldfish's blog and see the great lineup on May 1. There was a wonderful diversity of topics last year (and in earlier years).

Tuesday, April 14, 2009

Bigger News

The developmental pediatrician we'd waited over a year to see saw our son last week. She's a popular doctor and has the longest waiting lists of any in the children's hospital (and it's growing). And she gave him a diagnosis of PDD-NOS/mild autism and said it's really clear. This is a very new autism clinic or I'd have been there in a heartbeat--it's covered by insurance, in contrast to the educational diagnosticians.

When our son was in preschool we took him to a place that ran thousands of dollars in testing and then told us they didn't do diagnosis for autism. We did put him through the occupational therapy, which helped in extraordinary ways. He played in McDonald's tunnels for the first time, talked more, tried new things, actually played with his Rescue Heroes rather than just taking toys apart and putting them back together. This occupational therapy was what others would prescribe for sensory issues and autism anyway. In kindergarten, first, and second grades, I requested full autism evaluations (as required by law for suspected disorders) from the school so it would be free, and the school just did a few tests in the first few years and a few more in the second and declared he was not autistic. In second grade, I asked for an outside evaluation--which the school district has to pay for--and they did more tests!--they hadn't run the full battery before. I was furious. They found he had autistic spectrum disorder but refused to write up the diagnosis so that they didn't have to give him a 504 plan. And tried to argue with us about accommodation, saying that it was not needed since he doesn't qualify for special education. That misses the point. 504 is not special education--it is accommodation for a disability, whether a peanut butter allergy or wheelchair accommodations or autism. But they said they couldn't give the diagnosis (despite their findings!) since they claimed it had to be from a physician (no, sounds like work avoidance to me).

What it came down to was this: a first grader should not be given 0s on his homework and classwork when he does it just because he repeatedly forgets to put his name on the top or can't remember to take it out of his backpack or turn it in to the right place after being told to repeatedly--papers that would otherwise be 100! He should not fail classes when he does the work or because he can't remember to put a worksheet in his backpack when it's because of a disability. He could do the work--with accommodations! This year he has a teacher who taught special education before she taught gifted and talented kids, and she has education in both. So he's really not needed accommodation because she works wonderfully with him and understands how he works and has been able to assist him in ways that make him less dependent on others and increasingly able to self-organize and make it home with work and back to class with work.

But we don't know who he'll have for teachers in the future and think the diagnosis will protect him and help him if needed.

He amused the doctors, who brought in a whole team of experts for rapid, tag-team evaluation that would otherwise take a lot of appointments, by declaring a hard plastic chair "strangely comfortable" and saying that he needs some computer time to "destress."

So he needs some additional speech therapy and occupational therapy and a (free!) group session that works on friendship/discussion skills. He's been in a conversation group at school--they did do that. He has trouble with handwriting and hand strength, but does better with cursive. I'll see if we can get the speech at school and do a lot of the OT at home after some initial appointments.

This has been a long, emotional process. Something that's been this clear to us from the time he was very small--and to his pediatrician and others--should not be so hard to get a diagnosis code for.

We're increasingly having to talk to him about his autism, which is tricky. I don't want him to think there's anything "wrong" with him or feel insecure. He did become more interested in it when I showed him a computer program children with autism are using in the Boulder, Colorado, school district. I've tried to highlight difference but have discussed that people with autism may have problems with some areas and that all of this will help protect him from getting into a difficult situation as he did in first grade (which he remembers acutely) since we don't know who his teachers will be. I've also talked to him about other people with autism and their successes.

The good news is that he's doing increasingly well in school. Straight A's the past two report cards, and has scored in the top few percents on national tests such as Iowa. What I'm glad about is that I had him tested for the gifted and talented academy before kindergarten and then placed him in it. Everyone said he wasn't ready and couldn't do it. I worried. I've always pushed him a little and it's helped a lot. Despite the struggles, he's doing better in the school he's in than he would in others. Boredom causes trouble for him, and putting him in a classroom of kids learning the ABCs when he could read would not have been good. At the same time, I know they break directions down better at other schools. I don't know if I made the best decision or if the stress has harmed him but I do think he'll do better in the long term and have more opportunities.

There has been a lot on our schedule this month! The Tilt in Space gets installed next week, and we talk to a nonprofit group about consolidating debts and getting interest rates down. Our out-of-pocket insurance costs last year turned out to be $33,000 (including mileage, parking, special cushions at home, meds)--it bites that we've had to pay a percentage of surgeries instead of just co-pays. I think it cost me $30 to have our daughter. Good news is that the IRS refund will be about 6 weeks of income. I've decided from this that any future physical therapy will need to be set up for home after two visits and that there will be no Xtreme measures to prevent further adventures in Xtreme Arthritis since disability identity is not so bad and the arthritis continues anyway. We want savings and retirement, and now's the time, and I'm not going to be pressured into anything to be the good patient. Yeah, I know it's not good to have bladder pressure where there's kidney damage or to have heart/blood pressure issues, but I'm hoping all that's at a point of stasis. I don't want repeated MRIs, cortisone injections, extended physical therapy when I could do it at home, etc. The charges for those are hefty. This all takes a huge psychological toll too. We've had no problem making payments but can't actually make a sizeable dent despite all that we're putting in each month because of very high interest (these bills are on credit card and they've refused to negotiate lower interest, despite good credit). Thus the consumer help. I know we're not the only people in this boat. Most people don't understand the huge financial costs of illness.

What are the copays on Enbrel or Humira? I'm not sure that I'm willing. Hey, maybe I can go to work full time...just to pay my medical care! Heavens.

If I needed the spine surgery this year? It couldn't happen. We couldn't afford our portion. I don't even understand how we'd have paid our portion of the gallbladder surgery, which was acute.

I have touched base with a few former friends that I've missed. I wouldn't mind making short day trips or overnights to see a few friends in May--or June, with the kids. Some away time is good.

A Little But Not Much News

We're making it, no interviews yet, but we're doing fine and the kids are happy and healthy and enjoying regular activities. I'm supposed to be doing other things than blogging but have had a bad pain episode and have had to spend some time not moving much at all. Sitting up on the ischials just sends me into a downward spiral again. (I'm thinking, how's this full-time job going to work if I can get one?) This is, as always, temporary. There are lots of outdoor free festivals coming up between now and Memorial Day and we're planning to enjoy one of those each weekend.

My twin sister is increasingly showing signs of spondyloarthropathy, same exact areas and symptoms as me, increasingly over the past year or two; it's gone from ache to trouble getting up and around. I just hope hers does not progress as much. She was also in a bad pain episode the past few days and could not pick up the baby or walk around her house or complete tasks. Pain medicines have not helped a lot with this for either of us, though we're both feeling better this evening. Why the same pain flares at the same time, many many miles away? Maybe it's the weather front that moved through both areas. It's not bad to have company in this, though I'd rather she not have pain. At least she has an answer instead of years of searching ahead. The good news is that she doesn't have all the other spine and bone problems and there's not a reason to think she'll necessarily acquire the other physical problems I have. And she has access to info. :)

She confirms our mother never got my pain level when I was small because she said I never complained and only showed pain immediately on fracture or when a bone was set. No wonder I got dragged around everywhere, I guess I didn't complain enough.