Category Archives: ciswy

Time Slows Down

Today, twice I double checked my phone for its clock… it seems that I gained extra time in this Peet’s Coffee shop. That almost never happens to me. It could be that this is the first true alone time I have had in weeks. 

I worked on the book for a bit. I need to use my bigger screen at home to get the paragraph spacing right, and see the layout.. and try to get the pagination right ( and trimmed so Squid doesn’t cil me.) It is exciting to work on it. I know we don’t have an agent.. that there’s no flashy book tour, but I feel good knowing that the proceeds all go to SEPTAR and there are kids who might read the words on those pages and feel just a little bit better, a little less alone. God willing and the creek don’t rise, the book should be available mid-November.

Jake and I went to urgent care yesterday. He does not have a broken meta-tarsal, as was feared. After a few x-rays we discovered he had only chipped a little tiny bit off of a little bitty bone. Given that one quarter of all the bones in the human body are in the feet, it is not surprising that he would break something. We are having the convergence I think of a few things:

  • Jake has profound disabilities. He is unable to effectively communicate when he is in danger or injured. 
  • Jake does have cerebral palsy. We forget this sometimes because he is so physical, and he eats by mouth and he has no tubes or crutches, and mostly does not use a wheelchair. Most of the kids we know with CP, they are more stereotypical. 
  • Jake is an eight year old boy. He loves to climb and jump and explore and race around and feel the dirt between his toes. 
  • Jake likes being in bare feet.
I had not actually prepared for weekly urgent care/hospital visits. I did not break any bones until I was 11 I think. By his age I had chipped a tooth,  and had stitches (once), but I’m pretty sure I didn’t break anything until the roller skating incident. They used to have speed skate/a race at least once during each skate night. I was pretty fast, but not that fast, and was especially not in the winner category when I tripped over my own slates and landed on my right wrist. I also broke my left wrist falling off of someone’s back in a game of horse (now who the hell was I ever smaller than? Perhaps that’s why I fell?), and the third break, on my right arm again was from? I have no idea. I just remember that I had a wrist brace on both arms for three days during a period of time when one was healing and the other had been fractured.
Anywhoooo. I guess I forgot that Jake would get injured from normal playing too. I read a lot. I played some sports and rode my bike, but for the most part, Jake’s play life is much more physical than mine ever was. I am trying to find a balance between keeping him safe and keeping him from being bored. 
Jake’s bus is coming soon. I must swill my coffee and head back home to pick him up from the bus. It’s been a nice little vortex here, full of time, no children,  many business conversations going on around me. I am well caffeinated now, and thus fortified against what this afternoon may bring. Hopefully no injuries. These co-pays are killing me.

Time Slows Down

Today, twice I double checked my phone for its clock… it seems that I gained extra time in this Peet’s Coffee shop. That almost never happens to me. It could be that this is the first true alone time I have had in weeks. 

I worked on the book for a bit. I need to use my bigger screen at home to get the paragraph spacing right, and see the layout.. and try to get the pagination right ( and trimmed so Squid doesn’t cil me.) It is exciting to work on it. I know we don’t have an agent.. that there’s no flashy book tour, but I feel good knowing that the proceeds all go to SEPTAR and there are kids who might read the words on those pages and feel just a little bit better, a little less alone. God willing and the creek don’t rise, the book should be available mid-November.

Jake and I went to urgent care yesterday. He does not have a broken meta-tarsal, as was feared. After a few x-rays we discovered he had only chipped a little tiny bit off of a little bitty bone. Given that one quarter of all the bones in the human body are in the feet, it is not surprising that he would break something. We are having the convergence I think of a few things:

  • Jake has profound disabilities. He is unable to effectively communicate when he is in danger or injured. 
  • Jake does have cerebral palsy. We forget this sometimes because he is so physical, and he eats by mouth and he has no tubes or crutches, and mostly does not use a wheelchair. Most of the kids we know with CP, they are more stereotypical. 
  • Jake is an eight year old boy. He loves to climb and jump and explore and race around and feel the dirt between his toes. 
  • Jake likes being in bare feet.
I had not actually prepared for weekly urgent care/hospital visits. I did not break any bones until I was 11 I think. By his age I had chipped a tooth,  and had stitches (once), but I’m pretty sure I didn’t break anything until the roller skating incident. They used to have speed skate/a race at least once during each skate night. I was pretty fast, but not that fast, and was especially not in the winner category when I tripped over my own slates and landed on my right wrist. I also broke my left wrist falling off of someone’s back in a game of horse (now who the hell was I ever smaller than? Perhaps that’s why I fell?), and the third break, on my right arm again was from? I have no idea. I just remember that I had a wrist brace on both arms for three days during a period of time when one was healing and the other had been fractured.
Anywhoooo. I guess I forgot that Jake would get injured from normal playing too. I read a lot. I played some sports and rode my bike, but for the most part, Jake’s play life is much more physical than mine ever was. I am trying to find a balance between keeping him safe and keeping him from being bored. 
Jake’s bus is coming soon. I must swill my coffee and head back home to pick him up from the bus. It’s been a nice little vortex here, full of time, no children,  many business conversations going on around me. I am well caffeinated now, and thus fortified against what this afternoon may bring. Hopefully no injuries. These co-pays are killing me.

Love Notes

New Story posted on Can I Sit With You? Love Notes by Tanya Foubert.

One girl’s foray into shop class, and the inevitable gender bias that greets her.

Just not That Funny

So I can’t remember where I was, perhaps it was the CBS 5 Blogger Mixer? (which was great by the way) and someone told me I was funny. And then they asked, “Is your blog funny?” and as I contemplated a witty answer, my dear friend Squid volunteered

“No. It’s about her life.” And then the conversation moved on.

Yeah. It’s about my life, which lately is just not that funny. I mean I can make most things sort of sound funny…

like this one, ready?

Beware of Safeway meatloaf, it nearly killed me. It was so tough I almost took off my left index finger a few weeks ago and had to go to the local emergency room to get four stitches to staunch the bleeding. The wait wasn’t very long. I asked them to triage me last so I could actually get a nap. As I see it that visit will end up being 40 bucks a stitch and $200 an hour for a bed to nap in.

What really happened?
Jake was so upset, as he has been for weeks and weeks and weeks now that I was hurrying and watching him thrash at the counter with his aide and I stopped looking at what I was cutting and sliced my finger. It bled through a kitchen towel and I still finished making his dinner so I could feel comfortable that I was leaving the aide with as little else to manage as possible. At the hospital I fell asleep on the gurney so hard that they were a little worried about me, as it seems they would leave the room for 20 seconds and I would fall sound asleep before they returned.

and then here’s another good funny story:
My younger brother Gerard came up for the weekend. He arrived just in time on Thursday to go out for drinks with all of my mama friends from SEPTAR, scaring them with his amazing white teeth and strong beach body builder physique. On Friday night we decided to eat dinner at home because Jake was having such a hard time. He yelled for me after he went to check on Jake who had gone to bed early. I ran down the stairs only to find my brother with blood all over his hands and when Jake slid a bit to the side, trying to wriggle away from Gerard, blood all over the floor. Dude.. welcome to my home.

okay I can’t even make that story funny.

After we put Jake to bed he continued to thrash about. I gave him the max on the benzodiazepine that was recently prescribed by the Psychiatrist. Apparently, this stronger and “smoother” drug takes more time to kick in and more time to wear off, than the other one we had used sporadically to control extremely out-of-control, dangerous, thrashing. We kept checking on him, but Gerard was the one who found him covered in blood, coming from an unidentified head wound.

Head wounds bleed a lot, and after carrying Jake upstairs and putting him in his 5 point car seat in the car, which the only place we can truly hold him down without hurting ourselves, we cleaned up the wound and decided not to go to the ER. Staples that would probably get pulled out by Jake would inevitably be harder to deal with than waiting until the swelling in the little know went down and the 1cm would closed up. It wasn’t long before the bleeding stopped, but it was several more hours until we felt comfortable that Jake wasn’t going to bash his head into another wall downstairs, so he sat in the living room with us, belted into his thank-God-we-have-this wheelchair. It was awesome. Jake’s car seat still has Descartes’ shirt over it covered in dried blood.(which Descartes stripped on and held against Jake’s head as soon as he saw the blood.. God I love that man who knows how to react…)

okay so you can see…not that funny.

I also have an injured shoulder from Jake ripping my arm out of the socket (practically) which, while it is healing, and I am going to PT, makes me incapable of doing many household tasks well or at all… and my house was not looking good to begin with. And then I had an IEP for Jake, which led to the need to have another one (those went very well, just took a long time).

And I had a really emotional day after getting Jake into Camp. You would think that it would just make me happy, but it is a really bad process to sign kids up for 1:1 aides. I know I must be first my son’s advocate, but it makes me cry (while driving friends on the highway in my Not-so-mini van at 75mph.. not good)

and did I tell you about the 2 inch nail Jake stepped on last week? I don’t think I did. Went into and back out of his foot. His high pain tolerance meant that he did it while I was 12 feet away from him, and did not know expect for a strange drawing-in of breath that he took loudly. It was an odd enough sound that I watched him for a minute noticed a slight limo and asked Descartes to check out his foot as he passed by. He just scooped Jake up and said we are going to the hospital. I called Sage and she came for Lucy without waiting for me to tell her why I needed last-minute babysitting. The ER was great. They “got” Jake, and didn’t insist on numbing his foot all up with a bunch of needles before we took out the nail. It came out as it had gone in quickly. Jake only cried when they washed his foot, and I am guessing it is only because we held him too still. We were able to spend the entire next day focused on Jake because Squid took Lucy home with her to play with Mali.

I haven’t been laughing a lot lately.

I am okay. Good things have been happening too. I know they have. We decided on the list of contributors for the next Can I Sit With You? book due out in November. Jake continues to say more words at school– “No! Applesauce!” when offered yogurt. Lucy is starting to sleep a little better. My closet is clean. I have amazing friends who jump at the chance to help us. We went to the new California Academy of Sciences which the kids loved.

Those things aren’t funny either, but it is my life.

This is all just one part of my life, which will pass. Hopefully I am in a learning phase right now so that the next part is really really easy, and less physically painful, and funny. Maybe it will be funny.

Another Embarrasing Story to Help Children…

this one is all mine http://www.canisitwithyou.org

“Lena” and I were best friends in fourth and fifth grade. We even had boyfriends who were best friends. She came all the way from the other side of town to come to the GATE classes at our school. We went to different middle schools and pretty much lost contact some time during those junior high years.

She was a US champion surfer, which I suppose, is something that happens when you grow up in Southern California, you know movie stars and champion surfers. I also know she went to UCI (probably even took a class from my dad!)and I think she got a degree in Chemistry. I am fairly certain she is a pediatrician now.

now I sound like a stalker….

Every Action

has an equal and opposite reaction:

Jake off of his Adderall XR:

  • more verbalization
  • more silliness
  • less able to sit in class
  • more clearly visible by his reactions that he is “there” because he is making sounds and laughing appropriately at funny things
  • I feel like I need to research every drug on the market to find him a new drug that will help him focus without losing what little verbal ability he has.
Travel to Tahoe, Southern California, East Bay and everywhere else we went this summer:
  • Lots of great memories for kiddos and grownups
  • Nice things to reference in the car when we there is a crybaby Lucy who misses her cousins
  • Out of control laundry and suitcases that have not officially been unpacked completely in over a month.
  • Nagging feeling that I am behind
I have finally done all of the laundry:
  • can’t find any time to fold it unless I am awake at 2am
  • can’t find anything because it is in a gajillion baskets all over my bedroom
  • brief sense of accomplishment until I open the dryer and find more clothing that, while clean and dry… is still magically not going to be folded and put away.
  • constant feeling that I am behind
Date night with Descartes on Thursdays:
  • happy husband and wife who actually talked…to each other.. throughout an entire dinner about more than just who needs to go potty.
  • less cash
  • less time to do crappy laundry (see above)
Can I Sit With You? book number two being published this fall:
  • whooo hoooo excitement and thrill of accomplishing something meaningful
  • constant feeling that I am behind
Lucy is most precious bright star:
  • no sleep for precocious toddlers in our family apparently because she has not been asleep before 11pm more than once in the last two weeks.
  • I am worn out by 10 am each day
  • have seriously contemplated nearly full time preschool/daycare so at least someone can stimulate her for 8 hours a day.
  • breath-stealing guilt that I am sometimes annoyed by her smart, capable, little personage, after my oft-mentioned heartache of having a child with disabilities
Finally took care of myself and went to the doctor for shoulder pain:
  • not only do I have a rotator cuff injury, but something is f’d up in my elbow as well.
  • need to go to physical therapy 2-3 times a week for at least a month
  • personal mini-crisis wondering how the hell I am supposed to be strong enough to care for my disabled child when I am only going to get older and weaker
  • guilt for not going to the gym regularly so I could have avoided this injury, be in better shape and live a healthier life for me and my family.
I am now going to clean the guest room, one room, (I can do it) while Lucy is FINALLY taking a nap. 

Every Action

has an equal and opposite reaction:

Jake off of his Adderall XR:

  • more verbalization
  • more silliness
  • less able to sit in class
  • more clearly visible by his reactions that he is “there” because he is making sounds and laughing appropriately at funny things
  • I feel like I need to research every drug on the market to find him a new drug that will help him focus without losing what little verbal ability he has.
Travel to Tahoe, Southern California, East Bay and everywhere else we went this summer:
  • Lots of great memories for kiddos and grownups
  • Nice things to reference in the car when we there is a crybaby Lucy who misses her cousins
  • Out of control laundry and suitcases that have not officially been unpacked completely in over a month.
  • Nagging feeling that I am behind
I have finally done all of the laundry:
  • can’t find any time to fold it unless I am awake at 2am
  • can’t find anything because it is in a gajillion baskets all over my bedroom
  • brief sense of accomplishment until I open the dryer and find more clothing that, while clean and dry… is still magically not going to be folded and put away.
  • constant feeling that I am behind
Date night with Descartes on Thursdays:
  • happy husband and wife who actually talked…to each other.. throughout an entire dinner about more than just who needs to go potty.
  • less cash
  • less time to do crappy laundry (see above)
Can I Sit With You? book number two being published this fall:
  • whooo hoooo excitement and thrill of accomplishing something meaningful
  • constant feeling that I am behind
Lucy is most precious bright star:
  • no sleep for precocious toddlers in our family apparently because she has not been asleep before 11pm more than once in the last two weeks.
  • I am worn out by 10 am each day
  • have seriously contemplated nearly full time preschool/daycare so at least someone can stimulate her for 8 hours a day.
  • breath-stealing guilt that I am sometimes annoyed by her smart, capable, little personage, after my oft-mentioned heartache of having a child with disabilities
Finally took care of myself and went to the doctor for shoulder pain:
  • not only do I have a rotator cuff injury, but something is f’d up in my elbow as well.
  • need to go to physical therapy 2-3 times a week for at least a month
  • personal mini-crisis wondering how the hell I am supposed to be strong enough to care for my disabled child when I am only going to get older and weaker
  • guilt for not going to the gym regularly so I could have avoided this injury, be in better shape and live a healthier life for me and my family.
I am now going to clean the guest room, one room, (I can do it) while Lucy is FINALLY taking a nap. 

Coolness

We had our reading at Book Passage yesterday for Can I Sit With You? (www.canisitwithyou.org).

It was really pretty neat to present our book in the same little nook of Book Passage that hosts celebrities like Anne Lamott, Salman Rushdie, Lewis Black, Carl Hiaasen, Henry Winkler, Barbara Walters, Mario Batali, Brian Copeland, Maria Shriver, Alexander McCall Smith, Leah Garchik, Isabel Allende, John Gray, Amy Tan.. not all of these people are my favorite authors, but they are names most people recognize.. and I stood at the same little podium and talked with Shannon about our book, the impact I hope we are making, and how we managed to do it all for very little money, all the while adding to the coffers of our Special Ed. PTA SEPTAR (www.septar.org)

You know we are doing a second book. We are still accepting submissions until the end of the month. If you have a story that you would like to tell but aren’t sure you can write it yourself I would be happy to ghost write it for you. Just send me an email and I will help. We can even use a pseudonym if you don’t want your name associated with the story but you think it should be told. C’mon write a story send it to ciswysubmissions@gmail.com it will make you feel better to get it off your chest.

Thanks for all of your support.

Super Geek!

I just reformatted my computer. It’s really not hard. Ijust popped in a disk after sorting through hundred and hundred of files.

In fact it was sort of like organizing a bunch of paper, setting half of them on fire then pulling out a new notebook.

My computer is no longer singing that high-pitched sad whine…perhaps I can rejoin the wired world.

We are back from Seattle and the show was fantastic! Sage was HIL-LARRY-US. I love to hear my husband laugh like that. More when am not so cranky because it was much too wonderful a weekend to spoil with computer drama.

We have a reading next week at Angelica’s Bistro downtown, so make your reservations.

Wednesday May 7th 7:30pm
Angelica’s Bistro
863 Main Street, Redwood City, CA 94063
Tel. 650.365.3226

Super Geek!

I just reformatted my computer. It’s really not hard. Ijust popped in a disk after sorting through hundred and hundred of files.

In fact it was sort of like organizing a bunch of paper, setting half of them on fire then pulling out a new notebook.

My computer is no longer singing that high-pitched sad whine…perhaps I can rejoin the wired world.

We are back from Seattle and the show was fantastic! Sage was HIL-LARRY-US. I love to hear my husband laugh like that. More when am not so cranky because it was much too wonderful a weekend to spoil with computer drama.

We have a reading next week at Angelica’s Bistro downtown, so make your reservations.

Wednesday May 7th 7:30pm
Angelica’s Bistro
863 Main Street, Redwood City, CA 94063
Tel. 650.365.3226