Monthly Archives: July 2020

Too Many Variables

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Last week I had meeting with Jack’s support coordinator to organize his plan for the fall — via Zoom, because that’s how we meet with people now. 

Although we love our support coordinator (she’s organized, smart, kind AND she returns my phone calls), I got off the phone feeling exhausted and not really sure if we had accomplished anything productive. We kept throwing out dates and ideas and then going back to other dates and ideas. Honestly, I’m not really sure what we came up with or if it makes sense.

The only way I can describe it is as a giant algebra problem without enough information to solve it. Too many variables.

Now that Jack is an adult, he receives a budget, through DDD, to pay for activities. Last winter we’d found a wonderful day program and he was scheduled to start on July 6. We had budgeted for him to attend the program 5 days a week for 6 hours a day and then knew exactly how much we had left for other things like at-home support and a variety of therapies.

Then COVID-19 arrived.

The day program closed and the last we heard they’re hoping to reopen after Labor Day. If life were normal, we could plan accordingly. We would correct the budget and plan to start on September 8 — but life isn’t normal.

Not only does the program not have a definite opening date, they don’t know exactly how they plan to open and whether or not they will be excepting new clients right away. And, this being a new program for us, we’re not sure if we will feel comfortable starting immediately once they open their doors. So many safety concerns. We can’t send Jack until we are completely confident that the program is safe. 

BUT what does SAFE mean now?

Perhaps it means that the program is smaller and thoroughly cleaned every day. Perhaps it means they will stagger the hours for their clients, so that social distancing will be easier. Perhaps it means that every client will be provided a one-to-one to help keep everyone socially distanced and wearing masks. Perhaps it means there’s a good vaccine and/or treatment options. Perhaps it means that COVID-19 disappears magically.

Once we decide what SAFE means,  Jack might be able to start a day program, but will that be in October or November? It’s more likely that we won’t feel confident until January or February or March or . . . . ahhhhh!

How do we make a plan when we don’t have any dates?

Jack’s budget does provide at-home support and Jack’s caregiver, Maria, (and Anna, when she’s home from school) will continue to work for us, but we need to be careful about how many hours we use. If we use too many hours, we may not have enough in the budget for a day program once we are ready.

Since COVID-19 burst into our lives, I’ve gone through a lot of emotions. For a while, fear was all I could focus on — fear of leaving the house, fear of the groceries carrying germs, fear of opening the mail. Then I went through weeks of being exhausted from washing down groceries and by the energy it took to plan simple outings like going to the post office. Then, I seemed to flip and felt bored and useless — checking off days on the calendar when I couldn’t think of one significant thing that I’d accomplished. Depression was creeping in, and last week’s phone call with our support coordinator didn’t help.

It’s not just the unknown about Jack’s plans. As I look at the next couple of months, we have plans, but know that they are subject to change at any time. Our trip to Block Island, Anna’s return to school, Dan’s office reopening. Everything is fluid these days and it’s starting to really get to me.

Our family is pretty good at adjusting. We’ve been able to zig and zag through a lot of things that have come our way, but the problem is that COVID-19 doesn’t have — even a hint of — a timetable that we can glance at to know when life will return to something that feels normal.

I like to wrap up these posts with some “glass half full” statement or something to make you laugh, but I can’t think of anything today. Sorry. This suck. I hate COVID-19.

Love, Jess

Wear a mask. It might not be perfect, but at least it makes many of us feel a little safer.

Okay — I won’t leave you on a bad note. Here’s a fun picture of our new dog, Tupelo.

Special Education Mom

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Joanne’s beautiful boys in their younger years

I adore my friend Joanne for many reasons. She’s an extraordinary blend of Brooklyn tough, brilliant mind, and the warmth that comes when you’re faced with caring for your special child (in her case two children with special needs). She also has no fear of sharing a large pizza, farmer’s salad and an order of crostini with me at Arturo’s without mentioning the calories (ohhhhhhhh, how I miss those lunches).

When COVID hit, while I was focusing on how I was going to manage getting groceries and how long my hair would hold up before showing it’s true colors, Joanne was researching the law and contacting the State about resources for her sons. 

Four month into this, I’m finally in a full blown panic about what’s next for Jack and I haven’t been sure how to share it in words.

I don’t need to. Joanne has done it for me AND she shared it on CNN.

Keep fighting/advocating Joanne. Ben and Sebastian need you. Jack needs you. No pressure — but the entire special needs community needs you!!

Please click below to read her post and don’t forget to watch the CNN piece!

CNN

Love, Jess

Just as Sweet as Tupelo Honey

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People mourn in different ways. For me, saying goodbye to our dog, Finn, was one of the hardest things I’ve ever done. I knew I loved him, but the level of pain was unexpected. Everything in the house felt empty and I kept thinking Finn would race out from the corner of the yard when he heard there might be a guest arriving. The tears kept coming and my stomach was sour. I swore I would never let our family get another dog.

That lasted a few days.

Then, I found myself pausing every time I saw a dog on TV or on the computer screen. I tried to picture what life would look like with another friend hanging out on the sofa and playing with Kee in the yard. But, it was too soon to jump into any spontaneous decisions.

It’s not like I was calling shelters or checking Petfinder. I wasn’t even talking to the family about the idea of getting another dog, I would just pause at the pictures of pups if they happened to stumble onto a screen.

Then, one face in particular made me pause a little longer, as if she was speaking to me. A local friend was posting on Facebook that she was fostering a puppy for Lost Paws Animal Rescue, “New foster pup. Six month old girl, hound mix with possible Italian Greyhound in there, getting over a skin condition. 20 pounds. Come and meet her, she needs kids!” Something about the eyes and those floppy ears. I shut off the computer.

Two days later, my friend posted another photo. This time I wrote a comment, politely asking my Facebook friend to stop sharing images of the unbelievably precious pooch that she was fostering. 

She asked, “hmm. If I took her for a walk in Newstead, where shouldn’t I walk past back and forth until you run outta the house… 😉” 

I laughed, walked away from the computer and then quickly returned to give my friend our address and tell her that I would be out front pulling weeds all afternoon. I told the family what I had done, expecting someone to be the voice of reason, but everyone seemed to think “just meeting a puppy” would be fine.

That was Monday.

An hour later we were all on the driveway playing with the puppy. She was lovely. That night I wrote my friend and asked if maybe the little pooch could come for a playdate the next day, “just to see”. I also wrote another friend who works for Lost Paws Animal Recovery and explained that we were filling out an application for the dog, “just in case.” 

Anna and I went to pick up the doggie Tuesday and my friend loaned us a crate, “just in case” we wanted to do a sleep over “just to see”. As we pulled away she said good-bye to the doggie.

I had a checklist for the visit. I needed to use my brain with this one — my heart couldn’t be trusted with her velvety floppy ears.

1. She must get along with Keegan

2. She must be (at least close to) housebroken

3. Not a huge barker

4. Jack needed to approve

As soon as she arrived, our visitor and Keegan frolicked in the backyard, stopping only to take a pee on the grass. When we brought her inside, she jumped onto Jack’s lap and sat there letting Jack rub her head. And, she didn’t bark, even when we put her in the crate for her “just to see” sleepover — I swear she wanted to make sure she was very clear to check every box.

I wrote both our friends the next day and told them that this magical pooch needed to be a Torrey.

The brief history we’ve been given is that she was raised in the family home in South Carolina where she’d been born, but she and her brother were recently taken to a shelter because their family was going through something and could no longer care of the pups. Lost Paws Animal Rescue rescued her from the shelter and brought her up to NJ last week. She is a six month old mutt and clearly has been well-cared for. Pretty housebroken, doesn’t bark or jump, just wants to play and cuddle. 

Her original name was Margaret and then my friend was calling her Ladybird or Birdie. We tried all three, but she didn’t respond. We played with other names all day, but there was one that seemed to suite her best. A Torrey doggie family name that happens to be Elvis Presley’s hometown, the name of a band we love (Uncle Tupelo), a delicious honey and a song by Van Morrison.

She’s as sweet at Tupelo honey

She’s an angel in the first degree

She’s as sweet as Tupelo honey

Just like honey from the bee

Welcome to the family Tupelo Torrey III

Love, Jess

Special thanks to Joe Rispo and Alia Covel and Lost Paws Animal Rescue for bringing sweet Tupelo into our lives.