day 12

Opening my eyes at 5:10 and rising at 5:30 to get dressed to hit the grocery stores with a list at 6. Someone in a zoom group said last week, “Who the hell is going to buy lettuce at 6?”

Umm.

The last time I was grocery shopping was Saturday, March 14. Ten days ago. We could go a few more days before we eat the last of the apples, carrots and celery. We are out of milk and bread and coffee and have been for a few days. And Julia’s favorite tea. Two apples, 3 oranges and two onions and a mostly full freezer. If I restock now, I could keep out of stores for two weeks. These last 10 days have made our dependence on fresh food so clear. Shop the outside aisles of a supermarket. My pride (okay, admittedly I don’t think about it much at all) at packing Julia healthy lunches and keeping us away from junk food has given way to ice cream in the freezer and two kinds of cookies in the cupboard. Julia longs for noodle lunches and chocolate chip cookies. Not hard to please our hungry souls. Continue reading →

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walking, swinging & breathing

4DF06869-363F-43FE-97B2-448FF55F3326We are proceeding slowly through our day.  This is truly our first day alone.  During the weekend, we had a guest who lingered and we saw Cheshire and Justin twice since school let out.  So, this is day 1 alone. 

No word from the school about work so it’s time to devise some of my own.  Looking through work from a few summers ago and thinking about what Julia is doing in her community math class, I decided on time as our math focus, one of Julia’s weaknesses and something that she needs to become proficient in to succeed as an adult.  Today, I made up a worksheet for the passage of days.  In school, they are working on the passage of minutes. Continue reading →

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day 5

From yesterday: There is a puzzle on the dining room table and eggs in the kitchen ready to be made into pysanky.  Hoping to encourage Julia to do a drawing a day to post here. Trying to put some kind of schedule of our days together.  Loose to be sure. Motivation is lagging this morning and I haven’t made the call to nudge Julia or I into action. All I’ve done is answer a few emails and do the census online. Very, very curious about how we find our rhythm during this time. Considering all the time we have, we may just have time to live in these questions.

I made a big pot of beef stew yesterday and we have enough milk, eggs, cheese, rice and pasta to avoid markets for days.  The freezer is stocked with chicken breasts, soup, puttanesca sauce and frozen potatoes.  We are running out of bananas and spinach.  I usually don’t think about which fruit or veggie will go bad quickly, but avoiding stores . . . . What is a reasonable and responsible amount to time between shoppings? Continue reading →

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of dominos and labyrinths

9F1F4878-C5ED-48A9-8C6E-2C7CB08D69BCAnd it is only Thursday.  Now, Friday.

Like dominos.  Like those elaborate domino runs that are impossible to look away from. Got to watch them to the end.  All week, I compulsively check NYTimes.com. COVID19 and the stock market.

Two weeks ago, a group of high school students from Newton returned from Italy and went into quarantine. There were two emails from the school about that and more emails about possibilities and procedures if necessary. On Sunday, there was an email about a Newton resident with a student in middle school who was diagnosed with a presumptive case of COVID-19. The child, without symptoms, was following the quarantine protocol.  Continue reading →

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sliding time

FA5D7231-271E-492D-8A1D-4F308E7844C3 This may be the longest I’ve gone between blog posts. Time slides sideways; old challenges simmer; new ones poke their heads out of cold dirt like cheeky snow drops.  February was either 8 or 46 days long.  Julia’s behavior dominate this winter time.  My excuse for not posting here is the detailed daily log of Julia that I have been keeping.  Illuminating but time consuming and emotionally draining. I will write about her soon.  For now, just to note that last Tuesday, she hit a new low.  Julia had a screaming, crying melt down in front of school and when she was coaxed into the building, she banged her head against a wall hard enough to cause alarm about a concussion.  Although I’d like to believe that it was an incident not to be repeated, self-harm could be the natural progression of the dis-regulation that has been part of everyday life. Continue reading →

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fear

Living in Fear as a Special Needs Parent

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By Due Huynh

I read this post midday yesterday and tears were in my eyes.  My life, our family life, has never been so desperate, so hard, but I know fear. 

Two days ago, the mail carrier brought two letters from MassHealth which is Julia’s current insurer.  MassHealth has lots of rules for lots of programs and it is challenging to figure it out. There are help lines and FAQs both inside the MassHealth world and outside in the form of advocacy groups.  Still, MassHealth is labyrinth which makes the Triwizard Maze look like a walk in an English country garden. Continue reading →

Posted on by Suzanne Buchko 1