Skip to Content

Ray of Hope

February 26, 2021, 7:19 am

Readers, THANK YOU for checking in. Dar has exhausted me well past the point of updating this…mostly. However, yesterday, a ray of hope arrived. I received an email and then a call from the appropriate authority figure at the BUSD, no need to say who that is. She said that…a school is open to taking Dar! Right now! HALLELUJAH! HALLELUJAH! (Play the music) I had noticed that Contra Costa County had slightly more liberal re-opening procedures, at least for special-needs
Continue Reading »

Share this post
FacebookTwitterGoogle+PinterestEmail

Rough patch

February 18, 2021, 1:15 pm

February 17, 2021 Thanks for checking in here and sorry I missed last week’s update. Honestly Dar has been really wearing us out. There is a light at the end of the tunnel; yesterday I actually had (virtual) meetings with 1, his psychiatrist, 2, his ABA supervisor, and 3, the BUSD special education director. They’ve all seen the recent videos and they all agree more needs to be done than is currently being done. We are moving forward with new
Continue Reading »

Share this post
FacebookTwitterGoogle+PinterestEmail

A Letter From 2009, Written to 2020

February 5, 2021, 9:24 am

February 5, 2021 Yesterday my friend texted me a photo of a “letter” I’d written at a baby shower – and what a wower. If you can’t read my handwriting: “Hey you! Can you believe it’s 2020! As I write this I’m looking forward to your 11th birthday with 20/20 vision = that’s 2009 humor for you. As I write you haven’t been born yet! Here’s what I want you to do this week: read a new book. Find something
Continue Reading »

Share this post
FacebookTwitterGoogle+PinterestEmail

Isolating

January 30, 2021, 7:08 am

January 30, 2021 Ultimately, severe disability is isolating. You knew that. The books say that. But almost a year into an unprecedented pandemic, I can feel that in a way that I never felt before. Oh, sure, there are internet communities. If I sound helpless enough – even more than this blog post – in an email to the right group, many will rush to offer ideas or resources. But life with disability is isolating for Dar and for us.
Continue Reading »

Share this post
FacebookTwitterGoogle+PinterestEmail

Rock concert analogy

January 22, 2021, 6:29 am

January 22, 2021 Yesterday, a lot like a lot of Dar’s days lately in this pandemic-stricken winter when Dar can leave the house for no more than maybe an hour. Wifey and I are working for a living, we don’t have time to take Dar on five-hour excursions, and even if we did, we’re supposed to be sheltering in place. But five-hour excursions, also called school days, were Dar’s pre-pandemic life. He is frustrated. He is regressing. He is screaming.
Continue Reading »

Share this post
FacebookTwitterGoogle+PinterestEmail

Loss Leader

January 15, 2021, 5:17 pm

January 14, 2021 This isn’t a good week, and I’m way too dispirited to do a “full” blog post. The feeling I’m feeling, though, is enough for 1000 blog posts. Enough, and way, way too much. This week, when I look at Dar, I think LOSS. He’s a loss leader. I learned that term when I self-taught economics…a part of the business that directly loses money, but in a roundabout way helps the business, often bringing more customers or revenue
Continue Reading »

Share this post
FacebookTwitterGoogle+PinterestEmail

Hindsight and 2020

December 31, 2020, 8:45 am

December 31, 2020 At the beginning of the year, I said: we’re going green. Drop a car and add trees and solar panels. For realz. It’s so easy to hit a certain status quo of treading water and not actually do the things you really, really want to do. In January 2020 I said: not this year. We’re doing it!!! Well, we did it. And it was a lot harder than I thought it would be. I hate to admit
Continue Reading »

Share this post
FacebookTwitterGoogle+PinterestEmail

Merry Christmas to and from Dar

December 24, 2020, 7:02 am

For this Christmas 2020, I’m looking back at the photos we tried to take for the card for Christmas 2019. Dar does not understand cameras. Dar does not linger over photos of himself or anyone else. Asking Dar to smile for cameras is mostly frustrating. I tickle him to try to get him to smile; just as often, it has the opposite effect. If forced to choose between a photo of my best smile and his, it’s no contest: I
Continue Reading »

Share this post
FacebookTwitterGoogle+PinterestEmail

Smile more, honey

December 18, 2020, 7:28 am

I used to wonder: if an animal looks like it is smiling, is it smiling? Is it happy? Eventually I was convinced: yes. We can never get Dar to smile for photos. Maybe there’s a sort of unvarnished honesty to that. If he’s smiling, is he happy? Usually, yeah. But he usually doesn’t like having his photo taken. You ever hear of someone offended at being told “smile”? Yeah, Dar is way ahead of the curve on that one. I’m
Continue Reading »

Share this post
FacebookTwitterGoogle+PinterestEmail

Screamy sessions

December 3, 2020, 10:44 am

During this pandemic, Dar’s weekdaily three-hour sessions with his ABA therapist have been crucial to his education. But they’ve also been crucial to our sanity, a heavenly three hours a day when someone is being paid to take care of Dar. Uh, anyone notice that so far I’ve been writing this in the past perfect? Lately, Dar has been MELTING DOWN during every session. That only starts with screaming like he’s in labor. It also includes throwing things like silverware
Continue Reading »

Share this post
FacebookTwitterGoogle+PinterestEmail