Things I’ve learned about epinephrine autoinjectors over the past 7 days:
The market leader is EpiPen, made by Mylan. Every drugstore stocks them, every doctor prescribes them.
The biggest competitor was Auvi-Q, made by Sanofi, which had some real advantages. It was a different shape, hurt a bit less to use, and had nifty talking instructions that helped make it more foolproof. It was recalled last October, and is not yet back on the market. Not every pharmacy knows that it was recalled, and you may still run into a pharmacy that insists that it’s the only alternative to EpiPen, insists that it wasn’t recalled, and is stunned to find that it’s not on their shelf. I’m looking at you, local CVS.
An alternative used to be Adrenaclick. It was pulled from the market in 2014, but the Auvi-Q recall notice states that it is still available as an alternative. It isn’t.
What is “available” is a generic epinephrine autoinjector, with no brand name at all. It’s made by the same company that made Adrenaclick, though they seem to use a different company name for the generic to make things simpler. Many pharmacies insist that the generic does not exist. I have a trainer for it in my hand that was mailed to me last week, but it does not exist. It is supposed to be available to pharmacies from their wholesalers, and insurance companies have pricing for it. I have a prescription for it, but I cannot get it filled. The Auvi-Q recall notice does not acknowledge the existence of the generic.
None of these auto-injectors are considered equivalent, even though they all contain identical medication. A prescription for Auvi-Q is therefore currently useless, because the pharmacy cannot substitute EpiPen for Auvi-Q.
A pharmacy might be able to substitute generic epinephrine autoinjector for Adrenaclick, since they are the exact same device. But first the pharmacy would have to acknowledge that generic epinephrine autoinjector exists.
Many prescriptions for medications are for 30 day supplies. That’s a difficult way of looking at EpiPen, since EpiPen is an emergency medication. We need a bunch so we can leave one at home, take one with us, leave one at preschool, etc. Then we don’t need any for a year, unless we use one and have to immediately replace it.
For most medications that are 30 day supplies, Cigna allows you to refill every 23 days. Cigna allows you to buy 2 boxes of EpiPens at one time, and then makes you wait. But unlike with most other medications, Cigna allows you to refill EpiPens every 2 days. Cigna can also do overrides on the refill limits for various reasons.
For most medications that are 30 day supplies, MassHealth allows you to
refill every 24 days. MassHealth allows you to buy 2 boxes of EpiPens at one
time, and then makes you wait. But unlike with most other medications, MassHealth allows you to refill EpiPens every 3 days. MassHealth cannot do any overrides on refill limits for any reason. Unless maybe they can if a pharmacist calls the DUR office, but probably not.
EpiPen’s price with Cigna is currently around $550 per box. This is up from $300 per box a couple of years ago, and $100 per box a few years before that.
The generic epinephrine autoinjector is under $400 per box. Cigna will happily pay for either EpiPen or the generic without prior authorization. MassHealth requires prior authorization for the generic, but not for EpiPen.
It’s not clear whether EpiPens and the generic are considered separate drugs or the same in terms of setting quantity limits and calendar limits on filling prescriptions. If you just bought two boxes of EpiPens and would have to wait to buy more, would you also have to wait to buy generics? I don’t know what the answer is, nor what the answer should be. I might try to find out tomorrow.
As of early January 2016, EpiPen expiration dates are pretty consistently February 2017 at both Walgreens and CVS around here.
EpiPen is available in 0.15 or 0.3 dose strengths. The smaller one is called EpiPen Jr., and is for kids under 66 pounds. The larger one is for everyone 66 pounds and up. If you have a prescription for the larger one by mistake, Cigna doesn’t mind if you fill it for a 4-year-old. MassHealth, however, rejects it. It’s not clear what would happen if the larger one were not a mistake.
It’s not clear whether the two dose strengths are considered separate drugs or the same in terms of setting quantity limits and calendar limits on filling prescriptions.
Since our pharmacy deductible is combined with our medical deductible this year, and since EpiPen is $550 per box, David’s $2600 annual deductible is now met as of January 11. Whee.
Monday, January 11, 2016
8 trips to pharmacies in the past 7 days, plus a few phone calls
Dentist possibilities
Dentist possibilities (always check recent yelp reviews)
Brookline Dental Team
http://www.brooklinedentalteam.com/meet-us/meet-dr-myron-bass/
Dr. Hyejin Kwak, Dr. Seth Bozarth, Dr. Khaled El-Rafie, Dr. Myron Bass
Belmont Dental Group
http://www.belmontdental.com/procedures/cosmetic-dentistry/porcelain-onlays.aspx
Dr. James Nager, Dr. John Lapidus
Smiles by Rosie (East Somerville)
http://www.smilesbyrosie.com/
Dr. Rosie Wagner
(Michael went to her for the first time in January 2016 to repair a broken bonding on 9. She was very nice and happy to explain exactly what she was doing. Time will tell on how the bonding lasts, of course.)
Dr. Dale Wetmore, Dr. David Bloom (Back Bay, Boston)
After 15 years going there, office staff refused to provide a quick copy of an x-ray for an emergency repair (saying they had 30 days to provide records).
Dr. Wetmore is conservative about fillings and cavities, Dr. Bloom is much more aggressive. (Dr. Bloom wanted to do fillings on 18 and 19 in Nov 2015, Dr. Wetmore said there was no need in Dec 2015 when he looked.) I trust Dr. Wetmore when he says something needs to be done because he is generally very conservative about that.
Bonding on 9 broke in 2011, broke in Jan 2014, and needed to be reshaped a bit in spring 2015.
Dr. Russell Forman (Cambridge)
recommended by Joshua and Kyla
Dr Fish at Restorative Dental Group in Cambridge
recommended by Josh, who has had good experiences there in general including some crowns
When reading yelp reviews, remember that many people are reviewing either their hygienist experience or billing issues, rather than the dentist.
Friday, December 25, 2015
Chinese food dinner delivery in Medford
Ginger Exchange
July 2018
Overall: Faster delivery than estimated. Portions are small, but prices are not crazy.
Orange Chicken: 4/5. Sweet, not spicy. All white meat chicken (rare around here), no gristle at all, good flavor. Not much sauce, which was great. Broccoli was fresh and undercooked (as many people prefer). If only they could deliver it with any crispness to the coating. Came with a choice of white or brown rice. Brown rice was fine.
Sweet Garlic Udon with Chicken: 3/5. Slight gumminess to the noodles. Somewhat different vegetables than usual mixed in. Decent flavor.
Chow n Joy
July 2018
General Gao’s Chicken: 2/5. Tasted like mall food, and not in a good way.
Chicken Udon: 2/5. The noodles were gummy, there was too much sauce, and almost no flavor. Reasonable vegetable selection.
White rice and brown rice: Both fine.
The Great Chow, Malden
Overall: Wow, dinner was delivered very hot. Packaged well. Standard entrees do not come with rice. Easy enough to order via grubhub, though dishes do not have useful descriptions or ingredients.
Chicken Lo Mein: 3/5. You know how typical Americanized lo mein has that certain lo mein flavor? I have no idea what that flavor is, but it’s not here. The noodles are ok, the vegetables are ok, the flavor is not quite what I expect, and the chicken is perfectly tender.
General Gao’s Chicken Rice Plate: 3/5. The rice plate is a nice quantity of dinner for 1. The rice is kept separate in the container. There was no real heat level, the chicken was thighs, the pieces were large, and the dish wasn’t quite as steamed to death from being delivered as I’d expected.
Cheng-Du Spicy Chicken: 4/5. Too spicy for me, but I knew that when I ordered it. The texture was very good for delivery, and both the texture and the flavor reminded me of a Tibetan dish I used to order many years ago. Flavor was a bit too intense for my boring palate even with a lot of rice. Smaller pieces of chicken than the General Gao’s.
Shanghai Moon, Medford
Overall: This was pickup rather than delivery. Packaged well. Bonus package of dumplings was unexpected.
Chicken Lo Mein: 4/5. Good flavor, not a lot of vegetables or chicken, not exciting but met expectations.
Egg roll: 2/5. Wrapper was not quite right, drifting a little from proper bumpy egg roll wrapper towards a smooth spring roll wrapper. Contains small amounts of pork. Flavor was odd, a little sweet in a weird way. Duck sauce fixed that, but shouldn’t be necessary.
Vegetable dumplings: 3/5 towards 4/5. A proper dumpling wrapper in texture and flavor. The contents were similar to a vegetarian egg roll, and are not a great substitute in a dumpling. But better than not having dumplings.
Pork dumplings: 4/5. A proper dumpling wrapper in texture and flavor. The contents had some odd lumps, which may have been an incomplete grind or may have been mixing in edamame or something. Flavor was convincingly pork-like. Since I had ordered vegetable dumplings and not pork dumplings, I was at first quite impressed at how they had managed to mix together mushrooms and edamame and who knows what else to make a decent substitute for a dumpling filling. Sigh.
Sesame chicken with rice dinner: 3/5. Not enough flavor. A bit too much sauce. A generous quantity of dinner for 1. The rice is kept separate in the container. On the bright side, it was white meat chicken.
House Chinese mustard: Not the mustard I was looking for.
Rose’s, Medford
Update: Metal shaving in the food, and they didn’t even care.
Overall: Fast delivery, packaged well, piping hot. Rice is not included with entrees. No fortune cookie? Grrrr.
General Gao’s Chicken: 4/5. Chicken was thighs, with some gristle. But the batter was perfect, with some crunch that actually survived delivery, and the flavor was very good. Broccoli was quite undercooked.
Chicken Lo Mein: 1/5. No flavor, flat noodles instead of round, completely uninspiring.
New Hong Kong Village, Medford
Overall: No online ordering, but phone ordering worked smoothly.
Chicken Lo Mein: 4/5. Good flavor, lots of chicken, but the chicken was a bit dry.
General Gao’s Chicken: 1/5. Chicken was quite dry, coating was mushy, sauce had no flavor.
Chicken Wonton Soup: 2/5. Turns out this is pork wontons with chicken pieces in the soup. Soup had no real flavor, wonton wrappers were mushy. Packed well, though.
Monday, November 23, 2015
Life update
House: still broken. We have water damage from ice dams last winter. We replaced the roof, but still need to repoint the chimney (and foundation for a separate problem), replace the gutters, fascias, and soffits, and replace the enclosed front porch and skirting. It’s been incredibly hard to find people to talk about options and give quotes. I don’t know when we’ll ever get the big stuff fixed. We also have many small unrelated broken things that we have not gotten fixed, with more breaking each week than we can tackle.
House insurance: still broken. We contacted our insurance agent last winter, and filed the claim in August. Sent in a ton of info and asked a bunch of questions, spent hours dealing with an adjuster and a building estimator hired by the insurance company. We’ve received no money from the insurance company, no answers to any questions, and no assurance that we will ever receive anything. Tried to talk to 3 public adjusters about dealing with this on our behalf: one never replied, one is taking no new clients, and one sounded like such a horrible person that we just couldn’t see dealing with him. (Update to the update: Spent several days trying to hire a public adjuster who, it turned out, wanted us to do literally all of his work for him, which is not what we wanted. The insurance company is now offering us $17K on a $50K claim, and being incredibly rude and dishonest about it in the process.)
Cars: working. Still liking the new car.
Dog: vet couldn’t figure out what was causing the vomiting and frequent startling, so she’s ok.
Health: mostly endless appointments between the three of us, and a lot of experiences of doctors not paying attention or not answering questions. No hospitalizations so far this fall, which is a major improvement over last year. Michael’s knee recovered well from surgery last year.
Health insurance: still broken. Dozens of denied claims, endless errors and lies, way too much time spent trying to figure out how to correct the errors.
Lisa’s work: ok! This has been a bright spot, which is huge.
Michael’s work: not ok!
Temple board: unproductive, and too much disconnect from the rest of the board to feel like there’s much hope for improvement. (Update to the update: Turns out much of the board is disaffected or potentially mutinying. I feel less lonely in being dismissed and powerless.)
David: healthy, rowdy, not listening well. Lots of joy, lots of frustration, flipping back and forth repeatedly within minutes.
David’s preschool: suddenly a complete clusterfuck. He’s having a good time, but we need to do a new search for next year for reasons I can’t go into publicly. Have lost a ton of sleep over the situation, tried to offer advice and solutions that have been entirely dismissed, and can neither tolerate nor believe the callously destructive attitude of the people in charge of the situation. I could almost understand the choices they are making if they were gaining something by hurting everyone else, but they aren’t.
City government: difficult and painful.
Search for where to live: Difficult and slow. We cannot afford the places we like, we don’t like the places we can afford. For place, read both house and community.
Hobbies: What? We used to have those? Everything is endless crisis management. We do occasionally get an evening out, which is lovely. I like the aquarium and the science museum and other destinations for David, but I don’t get to do any of it at the pace I want. Travel has been impossible to plan. Hell, meals have been impossible to plan.
Friends: What? We used to have those? We see a few friends regularly, some friends rarely, and too many friends not at all. I find it hard to have conversations when talking about my life reminds me of what my life is actually like, when national news is so horrifying, and when David won’t actually let me have a conversation if he’s in the same building. I want to hear other people talk about their lives without making me talk about mine.
Stress levels: through the roof. Not coping.
Wednesday, November 18, 2015
Billing for allergy skin tests
Suppose you want to do an allergy skin test for food and environmental allergies. This is where they poke your skin with little amounts of different allergens, wait 15-20 minutes to see how big a welt each one causes, and jot down the results. (The false positive rate is estimated to be 40% to 50% for many allergens, so there’s usually something to write down.) They also do two controls: histamine and saline. If you don’t react to the histamine, then there’s a problem. If you do react to the saline, there’s a different problem.
These are billed as procedure code 95004, with the number of units corresponding to the number of different allergens tested (plus two units for the two controls). It’s somewhere between $5 and $38 per unit, according to different numbers from Cigna at different times. But when you do lots of units, the difference starts to multiply.
Cigna knows the procedure code, but they keep that a secret. Cigna knows how the units are counted, but they keep that a secret. Cigna knows how many units you were billed for, but they keep that a secret. Cigna knows how much they pay different providers per unit, but they keep that a secret. The only non-secret is the total amount they settle on.
You can get the procedure code from the provider, maybe. Or you can get the procedure code from various web sites about medical billing. That’s also how you can find out how the units are counted.
You can find out the number of units you were billed for from the provider, and Cigna is willing to confirm that number.
Finding out how much Cigna pays different providers so you can comparison shop? Forget it. That would be treating health care like a rational marketplace, and Cigna refuses to enable that.
The non-secret is that the final total is $578.51 for 16 units of 95004. That’s $36.156875 per unit, which is obviously not the contracted price. It’s also a touch higher than the approximately $90 total that Cigna said it should cost from this provider. And only 13 tests and 2 controls were done, so the number of units is overbilled.
Fortunately, I called Cigna and got this straightened out, with a clear explanation for what went wrong.
Tuesday, November 10, 2015
Follow me, and I will make you baristas of men
In the midst of the darkness of the world, God sent us a light.
In the dark midwinter sky, the wise men followed the light of the Star of Bethlehem.
John 8:12: When Jesus spoke again to the people, he said, “I am the light of the world. Whoever follows me will never walk in darkness, but will have the light of life.”
So there’s your design brief. Nothing should distract from that core message: light from darkness. But we want to reach beyond the reductionism of a point of light. The message is bigger than that, because Christianity is bigger than that. The Good Word has saved us all, and we need to show that sense of collective uplift. Show a rising upwards of humanity’s soul, for that is the true meaning of the holiday.
Red is a classical Christmas color, so start there. An ombre color shift from darkness up towards light, that’s the solution. We don’t dare claim that we’ve yet achieved true salvation, so let’s stick with a gradual lightening of color.
No more winter iconography. Snowmen and snowflakes are cute, but they distract from the purity of our cup’s message of a journey towards salvation.
In the dim pre-dawn hours, before other shops are open, we light up our stores to show people the way. We are each block’s Star of Bethlehem writ local. As our coffee wakes up our minds, let our cups remind us all of the need to wake up our souls. We can serve Jesus as we serve our customers. We are Starbucks, and we are being sorely misunderstood.
Wednesday, November 4, 2015
Lessons learned from Medford’s 2015 local election
1. There were originally going to be three mayoral debates. The first was cancelled, so there were only two, and the second was only a few days before the election. That leaves most people’s opinions set before the debates, which makes them spectacle instead of information. Recommendation: Be clear about the schedule and venue, schedule them earlier in the election cycle, and make sure they are available online.
2. The city council forum happened after the primary, which meant that the most interested voters had to vote once for city council before that forum. It also was not a real debate of any sort. Recommendation: Schedule an actual debate earlier in the election cycle, and make sure it is available online.
3. The school committee forum happened shortly before the election, and was never made available online. Recommendation: Schedule an actual debate earlier in the election cycle, and make sure it is available online.
4. The city completely failed to make videos available, despite having multiple public access channels and a lot of video equipment. There should have been clear videos from the candidates, and clear videos of the debates and forums. An informed electorate makes for a better community.
5. The city mostly failed to publicize the primary and the general election. Other communities near us do a much better job. We should be trying to increase public participation in our elections.
6. Candidates did not want to run in slates, and no community group stepped up to create a slate. It is difficult to do research on 28 candidates for various local offices, and it is difficult to decide whether to prioritize bullet voting for your favorite candidate or to use all your votes to try to vote against your least favorite candidate or to increase the chances of electing incumbents or challengers. Slates simplify research and help elect people. There are principled reasons to oppose slate voting, but there are practical reasons to support slate voting. The only time that a slate was used in the last 8 elections was when a local school advocacy group formed and recommended a slate of 4 candidates for the 6 school committee slots. That slate won.
7. Voters are actually willing to support a tax override for a reasonably specific purpose.
8. Voters elect incumbents, even when there are highly qualified challengers.
9. Voters rejected the only two teachers running for school committee, the only city planner running for city council, and the only two minority candidates for city council.
10. There’s a lot of noisy fear-mongering and hate-mongering on social media.
11. Penta seemed to have a huge advantage in yard signs, advertising, noisy supporters, social media presence, and actual campaigning in the community. It was not enough to overcome his long history of alienating people as a hateful politician. He tried to make this election a referendum on McGlynn, but it ended up being a referendum on Penta.
12. Falco has huge support in the community. It would be interesting to see him run for mayor.
Tuesday, October 27, 2015
Milk in dark chocolate, brands tested by the FDA
Last Valentine’s Day, the FDA issued press releases about having found milk in a lot of dark chocolate samples that they tested, including some that claimed to be dairy-free or vegan as well as in a lot that claimed to only have traces or a risk of milk from shared equipment. I submitted a FOIA request to ask for details, and last spring the FDA put up a lot more details at:
http://www.fda.gov/Food/IngredientsPackagingLabeling/FoodAllergens/ucm446646.htm
However, this didn’t include the actual brands and manufacturers of chocolate that they tested. It just included internally-assigned ID codes. After some pushing they sent me the list of codes for the report they put online. I’m not sure this has been publicly released before now.
A few of the FDA’s results stand out to me, as a concerned consumer. I was sad to see that “Ghirardelli SemiSweet Baking Bar” and “Ghirardelli 60% Bittersweet Baking Bar” both had more milk than two of the chocolate bars that listed milk as an actual ingredient, but better safe than sorry. “Rescue Chocolate 66% Dark Chocolate” claimed to be vegan on the packaging, showed no warning about milk, and contained milk. “Ethereal Confections; 66% Cacao, Strawberries, Rose Petals, Pink Peppercorns” and “Oskri Almond Dark Chocolate Bar” claimed to be dairy-free or lactose-free on the packaging, showed no warning about milk, but contained milk. And most of the chocolate bars tested that had warnings about shared equipment or possibly containing traces of milk, while not listing milk as an actual ingredient, in fact did have milk in them. Some of them had more milk than chocolate bars that listed milk as an actual ingredient.
Here you go, world:
Related to http://www.fda.gov/Food/IngredientsPackagingLabeling/FoodAllergens/ucm446646.htm
Saturday, October 24, 2015
Jump on in
There’s a poster up at my synagogue which reads:
GET SCREENED!
YOUR GENES MATTER...
1 in 4 Jews is a carrier for at least
1 of 19 Jewish genetic diseases
Jewish genetic diseases are preventable. All it takes
is a simple blood test to find out if you are a carrier.
Yup. They’re also preventable by widening the gene pool. You know what does that? Being welcoming towards interfaith families.
To the thought leaders of the Conservative movement, intermarriage violates Jewish law. But life and health are more important than observing Jewish law, which is why we are required to violate the Sabbath to save a life, why we are not supposed to fast on Yom Kippur if it will make us ill, etc. Why is this different? Jewish genetic diseases are a solvable problem, which over half of Jews getting married today are already solving by marrying someone with different genetics. This should be celebrated!
So here’s my new poster text:
GET SCREENED!
YOUR GENES MATTER...
1 in 4 Jews is a carrier for at least
1 of 19 Jewish genetic diseases
Jewish genetic diseases are preventable. All it takes
is a larger gene pool, so let’s welcome interfaith families.
All fixed.
Friday, October 23, 2015
I paid for this back seat driver, so I want my money’s worth
Have you ever had some electronic equipment get bogged down over time? It happened to our Garmin, which after some years of use started to get slower and slower at giving directions. It started to tell us to turn after we had passed turns, instead of before the turn.
It’s mildly annoying when it happens to a Garmin, which you can replace. It’s more worrisome when it happens to your Subaru’s Eyesight system, which is a suite of safety software built into the car. One of the features is a lane departure warning, which beeps when it notices you cross a lane marker without having your turn signal on. Over the course of 10,000 miles, the Eyesight system gradually stopped noticing so often that we were crossing lane markers, and it wasn’t because we had suddenly become more precise drivers.
Around that time, Subaru posted a recall for the Eyesight system for an unrelated bug, and our Eyesight system got reinitialized. Hey, look, the lane departure warnings are back! This seems like good confirmation that the system had stopped working correctly over time.
But Subaru doesn’t seem to have any standardized testing approach for the lane departure system, so they have no way to verify with any precision what was happening. The dealer’s mechanic took it out for a test drive, and he got it to beep, so it must be fine. That’s not exactly comforting when you think about how complex the code must be for this system. And other parts of the suite of safety software are actually intended to change the speed of the car autonomously to avoid accidents, so it would be nice to both trust the software and verify that it’s working.
Someone needs to take a Subaru with Eyesight at 0 miles driven and compare its responsiveness to a Subaru with Eyesight at 20,000 miles driven since the last software reinstall or reinitialization. Try crossing a variety of stripes at different levels of wear or fade with both cars, and see whether both cars alert equally. We don’t expect the system to be perfect, but we do expect it to keep working the way it worked when it was new. And I hope that Subaru would not just expect the same, but would test that the system met their and our expectations. Self-driving cars will be a lot less fun if they only work correctly for a year or two.
Friday, October 2, 2015
Silence = EpiPen
As David’s parents, we need to communicate with other people about his life-threatening allergies. We need to tell people what his allergies are, and what the best steps are to keep him safe. We need to do this when people come to our house or when David goes to someone else’s house, when we leave David in someone else’s care, when we sit down at a restaurant, when we plan to share a meal with someone, and when David goes to school. Any failure on our part to do that is a risk to David’s life and health.
Yesterday the preschool director tried to tell us not to do that. She apparently feels she has the right to stop us from communicating with other parents about our son’s life-threatening allergies. That is wrong.
She can offer to help. She can provide us with contact info for other parents in the classroom. She can offer her advice and expertise as someone who regularly deals with the parents of 100 preschoolers about how best to communicate the necessary information. She can reinforce our message, and she can add her voice. She can offer to lend her voice of authority, and she can offer to substitute her voice of authority to better convey the needed message. Offer, not demand.
But she cannot try to silence us.
Leave aside her duty of care to the children in her preschool. Leave aside the fact that it is widespread practice for preschools themselves to communicate with parents about classroom allergies, and that she refuses to do that. That’s a separate failure.
When she tries to stop us from communicating with other parents about David’s life-threatening allergies, she raises the risks to David. She also makes us more reluctant to speak up about his allergies, which is the opposite of what every pediatrician and allergist and child psychologist recommends. That in turn makes it harder for us to teach David to speak up about his allergies himself, which every pediatrician and allergist and child psychologist will tell you is what David needs to learn to do in order to keep himself safe.
When other parents come to her with questions or doubts about David’s allergies, she has an obligation to either forcefully agree with our message or to ask those parents to talk with us directly (which is actually part of our message). If she contradicts our message, she is crossing the line from irresponsible to dangerous. She did not tell us how she actually responded to those parents, but her willingness to try to silence us does not inspire confidence.
I won’t be silenced when David’s life and health are at stake.
Lisa thinks we might have educated this preschool director, that she might have learned something from us. I hope that’s true. Because if it’s not true, I need to spend far too much time trying to find a new preschool for David and trying to find a new director for this preschool.
Thursday, October 1, 2015
Not a good start to the second year of preschool
At the start of the school year, we spent hours crafting a letter from us to David’s classmates’ parents asking them to please be careful about tree nuts and mango at preschool to help keep David safe. (He is 3, and is unable to fully advocate for himself or keep himself safe.) We included all of our contact info, and we asked the preschool director for email addresses for the other parents so we could send it to them. She refused, and insisted on emailing it out herself. She didn’t send it out before the first full day of school, so we printed it out and asked the teacher to send it home with all the kids. Even if it had gone out by email, it seemed like a good idea to do it on paper as well, since email isn’t perfectly reliable.
The director finally emailed our letter to all of the parents after the second day of school had started, after we told her that we would have to remove David from the school until we knew the other parents had actually been contacted. She included our cover note asking her to send this out on our behalf.
Not a single other parent contacted us. No questions, no complaints, no reassurances, nothing.
Today the director told us that she had multiple other parents complain to her about our letter. The director was angry with us that we had sent a note to other parents without having her review it (the same note that she had reviewed and agreed to 2 weeks ago). She was also angry that “we” had put stickers about David’s name and allergies on various pieces of paper outside his classroom. Those were stickers we offered to the teacher in case she needed to label David’s possessions, the same stickers that we used on his possessions all of last year at this preschool, and that the teacher decided to plaster all over the place 2 weeks ago. The director, who prides herself on knowing everything that happens at the 7-classroom preschool, hadn’t noticed for 2 weeks, and had decided incorrectly that it must have been us doing it yesterday.
Back up a little. On the visit day before the first day of preschool, we heard the teacher tell other parents that there were no kids in the classroom with allergies. We had to vocally correct her, but many of the other parents had already left and we don’t know if the teacher had told them the same thing.
This was the same visit day where they refused to put David’s classroom EpiPen in the classroom with him that day. (Their broken protocol is to put it in the classroom after the visit day, before the first full day.)
When we asked the teacher in the first week of school for details about how they handled food in the classroom, the teacher responded by telling us to trust her.
When we asked the teacher on a different day about checking the lunches of the kids sitting next to David, she told us that she doesn’t have to because she knows that every parent was told about David’s allergies, and besides the school is peanut-free. (Peanut is not one of David’s allergies, so that doesn’t actually convince me that she even knows what his allergies are.) And she repeated that I was supposed to just trust her instead of asking any questions.
Yesterday, as part of a 2.5-hour appointment with the doctor who heads the Boston Children’s Hospital food allergy program, we reviewed with that doctor what we guessed were the necessary classroom protocols to keep David safe (hand-washing, checking lunches of adjacent kids, etc.). He added some things we hadn’t ever thought of, and we typed it all up and gave it to the director this morning. She blew a fuse, telling us that she didn’t trust the list because it wasn’t signed by the doctor, that the school did everything required by the state, that she couldn’t possibly do everything on the list, and finally decided that they already did everything on the list. She listened as we tried to explain that we can’t know what they do or don’t do on that list if they don’t tell us, that the teacher had been substituting demands of “trust me” for actually telling us what they do in the classroom, and that the teacher had specifically said that they were not doing some of the things on the list. She then dragged the teacher into the office to have the teacher reassure us about what they actually do in the classroom, and the teacher was very concerned that we had not simply trusted her.
It’s the same director as last year, when the school seemed to have perfectly good protocols and good communication and well-trained teachers. Every school year is different, apparently. And while I’m sure we finally have the director and the teacher paying attention, it now appears we have classroom parents who are deeply offended by someone else having life-threatening allergies. As if this is something we chose.
There are a huge number of people who complain bitterly about their child being deprived of the right to eat whatever they want wherever they want, just because of some other child’s silly life-threatening allergy. It's an astonishing level of self-absorption and self-centeredness. It’s disturbing that we have some of those people as fellow parents in David’s very small class, but we’re unlikely to fully escape them anywhere we go. We were just lucky last year.
Do we start over at a new preschool, pulling David away from all his friends, hoping that a new preschool will behave better and have more civilized fellow parents? A new preschool will have more parents, none of whom know David or us, and an entirely new set of communication challenges. And it will take us a long time to learn whether it’s actually a good fit for David socially and intellectually, which this preschool was last year.
This is all exhausting. It should have been one conversation at the start of the school year, with the school then communicating with the other parents and the teacher telling us exactly what protocols they follow around food. Instead it’s been an endless struggle, and that’s baffling.
Thursday, September 17, 2015
Possible foods for kiddush
Here are the rules: No nuts, no mango, all kosher. This list should grow over time.
Kosher brands to buy
Food Should Taste Good (Whole Foods, Costco): no nuts, all kosherhttp://www.foodshouldtastegood.com/about-fstg/faq/view-all-faq/products
Treasure Mills School Safe (Whole Foods): no nuts, all kosher
http://www.treasuremills.com/about-us/plant-certifications/
Kosher brands to avoid
Entenmann’s: nut cross-contamination known in all productsAllergies and trust
Friday, August 28, 2015
Dear Abby, my playground is a wreck!
Playstead Park is today in the condition that Cummings Park was in six years ago: graffiti, vandalism, broken equipment, trash everywhere. The discussion about it on Facebook is heartbreaking. Many people want the playgrounds maintained, want the damage fixed, and want the vandals caught and punished. None of those people work for the City of Medford.
The police department is responsible for preventing the vandalism and catching the vandals. They refuse to patrol the parks, refuse to install video cameras, refuse to send officers when they are told that vandalism is occurring, and refuse to investigate. Whose fault is that? It’s the fault of the individual officers who refuse to do their jobs, the police administration who refuses to exercise any control over the police department, the mayor who oversees the police department and sets the city budget, and the city council who approves the city budget. If you want this to change, show up at community police meetings on the first Wednesday evening of every month at the police academy and say that you want the police to start doing their jobs. If you want this to change, take photos of the damage and show up at City Hall, demand to speak to the mayor, and tell him that you demand he instruct the police to start taking care of the parks.
The parks department is responsible for repairing the damage and maintaining the parks. The head of the parks department is Mike Nestor. The parks department is part of the Department of Public Works (DPW), and they all report to the mayor. The parks department does not repair most damage and does not maintain the parks. Whose fault is that? It’s the fault of the mayor and the city council, who jointly control the city budget. Many DPW employees are well-intentioned and hard-working, but the department is understaffed, underfunded, and has been given other priorities. If you want this to change, call DPW every day with complaints about specific damage at specific locations in the parks. If you want this to change, take photos of the damage and show up at City Hall, demand to speak to the mayor, and tell him that you demand the parks department start taking care of the parks. If you want this to change, do not vote for any incumbents on the City Council.
What can you do today? Voice your displeasure to City Hall. Call the mayor, call DPW, call the police, call every member of the City Council. Be clear, firm, and specific about what you want them to do. Keep calling until you get what you want.
What can you do on Tuesday? Vote, and do not vote for any incumbents for City Council. The current City Council is fully aware that the parks are not maintained and they are comfortable with that. We need a new City Council.
What can you do in the longer term? Keep voting, and do not vote for anyone who has held public office in Medford recently. Encourage new people to keep running for office, and pray that we get someone new to run for mayor in 2017, since 2015 is just a race between a current member of the City Council and a former member of the City Council. Support an override to increase the city budget to invest in our city. Support a change in the city charter so we do not leave all of the power in the hands of the mayor with no power in the hands of the residents.
DPW can repair equipment, can clean the parks, and can also hire contractors to do both of those tasks. The mayor can ask the county sherriff’s graffiti removal unit to come remove graffiti. (There’s no charge for that, and it baffles me that the mayor refuses to use their service and instead leaves our city covered in graffiti.) The police can patrol the parks, can remove people at night when the parks are closed, and can arrest people they catch vandalizing the parks. These things are all possible, but they will not happen routinely until the city government changes.
I’ve done everything a resident can do. I’ve called the fire department when items in the park were set on fire at night, which used to happen with surprising frequency. I’ve called a homeless services agency when a homeless person started staying in the playground. I’ve called DPW and the parks department, I’ve emailed DPW and the parks department, and I’ve shown up at DPW in person. I’ve gotten a mix of rude answers and polite brush-offs, and occasional action when I’ve emailed Mike Nestor. I’ve shown up at police community meetings, spoken with individual police officers and police administration, and called the police when I’ve seen vandalism occurring. I’ve gotten a mix of rude answers and polite brush-offs, and occasional promises of increased patrols that rarely actually happen. I’ve been cursed at by police officers on the phone and threatened by police officers in person. I’ve gone to a Parks Commission meeting, which was utterly useless for action on playgrounds. I’ve contacted the county sherriff’s graffiti removal unit directly, obtained the form for requesting their services, filled it out and given it to City Hall to act on. That last action embarrassed the city into actually removing some graffiti themselves. Once.
My one real success was around six years ago. After over a decade of complete neglect of Cummings Park by the city, which was in at least as bad shape as Playstead Park is today, I went to City Hall. I brought some large color photos of the damage, and demanded a meeting with the mayor. He called in the head of DPW and the police chief, and we all sat around a table while I laid out their decade of neglect, showed them the results in color, and told them that it was simply unacceptable. They acted surprised and appalled, and within a week at the order of the mayor, DPW repaired and replaced the broken equipment and broken structures, and the county sherriff’s graffiti removal unit came in and removed the graffiti. The police actually responded to a few phone calls in a professional manner for the first time in over a decade, and explained to a number of teenagers that the playground was no longer an acceptable place to drink and do drugs at night and that tearing apart the park equipment was no longer an acceptable activity. That turned out to be enough to turn things around. Within the next couple of weeks, little children started using Cummings Park in far greater numbers. (It used to be largely abandoned during the day, and with good reason.) Parents started contributing toys and play structures to the playground. (This had not happened in over a decade, but it started then and has continued for the past six years.)
The cost is that we have to keep volunteering our time. We have to call the police, clean up garbage, call DPW for continued maintenance, report damage and graffiti and vandalism, throw out toys that are broken beyond usefulness, and trim weed trees. We have to put up with frequently unprofessional and hostile responses from the police and DPW, and put up with complaints and threats from the minority of neighborhood residents who would prefer to see the park go back to falling apart. But we’ve seen how bad it can get, and we’ve seen how much better it can be, and we made our choice. Any parent in Medford knows (or should know) Miss Andrea at Medford Family Network. She runs playgroups that go around to all of the city parks, and if you ask her, she will tell you that all of the parks need that sort of care and attention from neighbors.
A functional city government would not rely so heavily on us to do their jobs. But that’s not the city government we have, and it won’t be until more Medford residents wake up, realize that the deplorable condition of much of our city is not inevitable, realize that the unprofessional and hostile way that city agencies interact with residents is not inevitable, and demand both a change in attitude and increased investment in our city.
The city could make Playstead Park look ten times better tomorrow (and will if you scream at the mayor loudly enough), but until enough neighbors take on enough responsibility themselves and/or the city government changes, it will all be torn apart again in a matter of weeks or months.
