Frozy Toes

We just had a great Easter weekend in Tahoe with my sister and her family. So many things went right. Yes, I said so many things went right.

I think that’s how travel is for most people. They just pack their bags and get into the car, or get on the plane, then they check in or knock on the door and then they put down their bags and they enjoy their vacation.

I’m not about to complain about going to Tahoe, don’t worry. I already now how lucky we are to have a home there filled with supportive and loving family.. who let us stay there for free (or maybe for a case of Two Buck Chuck). It’s just that travel is so difficult sometimes that it makes us want to go back home, lock the doors and have groceries delivered.

Lucy and I went up on Thursday night, so we would be there in time for me to sing with my sister at the Good Friday Tenebrae service. I think it’s the first time I’ve made it in time to practice and be able to sing with her at church. I love singing with her, so it was very special for me.

Lucy and I had such a nice drive. We stopped and ate inside In N Out burger, something she always wants to do and never gets to, since it is often easier for our family to keep driving while I feed kids in the back. She had great table manners and we really enjoyed each other’s company. We talked for most of the car ride up.

Descartes brought Jake up after school on Friday, and despite a very big storm, made it in time to put sleepy Jake with the babysitter and still get a chance to go for a drink at a new-ish wine bar.

Saturday we took the kids sledding. Jake didn’t last in the sled even to get across the expanse of flat between the car and the hill. The powder was deep, and when he dove off of the sled we were pulling we let him stay there, playing in the snow. I stayed with him for a bit, then Descartes while the other one of us helped Jaster and Demanda with the sledding. Then I heard Descartes holler for me.

Jake lost a shoe. Lost a shoe? Lost a shoe. And of course this was the one time we had left the house without an extra pair of shoes for him. His snow boots had already been left at home, home 4 hours away, so we were pushing it with his tennis shoes. And it’s not like Jake is going to tell us where he lost the shoe. Descartes carried him back to the car so Jake could heat up his frozy toes.

It was fine. Jake and I played in the car while the little kids finished sledding, and because they are little and every hill is a mountain, it wasn’t too long before the whole gang was back to the car.

I’m not sure I’ve mentioned it yet, but we are headed on a cross-country trip this summer. We will be flying to the East coast, where we will meet Oma and Papa and their RV (which they will have driven across the country). I am going to the BlogHer ’10 conference in New York that first weekend, then Descartes, and the kids, and the grandparents will pick me up at a train station in a state I’ve never been to (Pennsylvania?) with the RV with a car in tow. I will be detailing the trip later, but basically we spend a few days with my in-laws then drive the rest of the trip across the country with our little precious children, blisfully taking in National Parks and quiet streams and fabulous diners etc.

Except I just started to worry a little bit. The shoe thing got me thinking. I know if we forget anything we are probably going to be able to afford to buy it along the way, and there is an entire RV for Jack to hang out in if we lose a shoe, but what else will happen? I’m starting to get little butterflies about the whole thing. Detailed checklists will begin shortly.

*****

We will probably be blogging (Descartes is going to go all “bloggity blog!”) the entire trip, and we will complete some of the same route that Descartes took with his family more than 20 years ago. It should be neat to take photos and take notes of the same places so many years later.

The Man at the Door

The knock was firm.

KNOCK. knock KNOCK. KNOCK.

When I opened the door, the gentleman had leapt back off the top stair, and stood on the landing two stairs below the stoop. He is probably my age, maybe a little older, and between his two hands he is grasping a piece of paper very tightly, and holding it almost at chin level.

“Hello ma’am. I paint the numbers on the street, because it is very important if there is an emergency that the fire or the police know exactly where you live. I can paint the numbers. This is my business license. If you have any questions you can phone the city, but this is my license.”

His intonation and affect on the wrong words throughout his pitch immediately quell that annoyed feeling I had, the one I always get when someone peddles at my door. I smile earnestly towards him, then he jumps up one stair and hands me the license. The edges of the paper are grubby, and wrinkled, but the center, where the information is, is perfectly, perfectly, clean.

“How much?”

“Thirty dollars ma’am.”

“That sounds like a great idea. We really need to have that done. Do you take a check or just cash.”

“I can take a check.”

I tried to hand him back the business license but he was bounding down the steps with his grey tool box, and without turning around he said, “No, you should keep it. It has my name on it because it’s my business license, and you can get my information for your check.”

right.

I read his first name “Hendry” and sort of half-yelled down the stairs at him, “Is this correct? Hendry?”

“Yes ma’am Hendry H E N D R Y. My name is spelled correctly on my business license.”

bet that hasn’t made life any easier, huh, Hendry?

I closed the door to head upstairs to get my checkbook. I couldn’t hold it in any more and I started to cry, sob really.

I went up the stairs and Lucy rushed over, “Momma, why are you crying?

uhm. deep breath. I never know quite how I am going to respond to her questions that have *really big* answers, answers that might shape her whole opinion about her brother or his classmates, or the entire world. I must somewhere be practicing speeches, in my restless sleep perhaps…

“You know how Jake is a special kind of kid? Well, the man at the door came to paint the numbers on our curb so the police and firemen can find our house in an emergency. The man at the door is a grown up who was probably a little bit like Jake when he was little. He was a special kid, and when mom sees a grown up who was probably a special kid like Jake, all grown up with a job, it makes Momma so happy that I cry.” (She understands the happy crying thing.)

“You know how it’s tough for Jake to do chores at our house, to do jobs at our house? Well, when Jake grows up he will want to have a job, and so it makes Momma really happy to see that kids like Jake can grow up and have jobs.”

I write the check. Lucy stands next to me.

“Mom, Jake has jobs at school, right now. He has jobs Momma.”

“That’s right baby, I guess he does.”

I finished the check for Hendry and walked it down the 3 flights of stairs to him. He was sitting in the street, painstakingly painting numbers on my curb.

“Here’s your check. Thank you very much. Do you have a business card, I could recommend you or do you go door to door?”

“No ma’am I go door to door. I have my business license.”

“Yeah, that’s a great idea to have that. It makes it very official.”

“It IS very official. I got it from the city.”

“Thanks again.”

and I made it back into the house before I started to cry again. This time I went to my room, where Descartes and I had been resting (since we were both sick). I crawled up on to the bed and sobbed. Descartes put his arm around me and pet my hair a little.

“Do you know why, [heave], I’m [deep breath] crying?”

“Yes dear.”

“I’m sorry, I can’t seem to stop.”

“I know. This is why I don’t Twitter.”

“Why, because you would have to say something like “Grown man with autism comes to door, steroid-induced hysterics by wife ensue?”

“Something like that.”

“I hope he doesn’t get run over while he’s painting the numbers. That’s all I need is to explain to Lucy all about the grown up guy who was like Jake as a kid, who had a job, but is now dead in the street. That would really make me cry.”

“Yeah, probably.”

“Hey, you know? I would be crying even if I weren’t on steroids.”

“I know. I know. Take a deep breath. It’s all good. We’re all good.”

Doesn’t that Hurt?

Jake is on his way to school now, the van slowly winding its way down the Peninsula until coming to rest at his personal oasis, WunderSkool. The doors will open and one of the precious, talented and caring aides will greet him…

and this morning they will gasp. Jake has a big old broken nose. It’s so ugly that I haven’t taken a photo, and probably won’t post it because it will require a disclaimer.

Here is my artistic attempt using a stock photo from Adam:

It didn’t actually happen on my watch, and for that I am grateful. Doesn’t that sound awful? I just worry all day every day that something terrible will happen to my children, something that I could have prevented had I just been parenting a little bit more diligently.. well this is one of those times when I was not even in the building… so phew… Somehow I am perfectly aware that accidents happen and have no blame or harsh words for anyone else should my child be injured in their care, but, in my typical style, I have very little forgiveness for myself should something happen.

Okay since this is not all about me… poor Jake.. Descartes got the bleeding to stop fairly quickly, and Jake was never crying or upset at all. He just doesn’t like to hold still. By the time I got home a half hour later Jake was playing and laughing and his head was swollen and turning colors. We gave him some motrin. He went to bed.

We haven’t had a major injury for awhile.. not since the nail in the foot? Does that mean we had an injury-free summer? I know I’m missing something.. oh there was the time when he badly bruised his gentleman’s region.

But whatever amount of pain he may be in he was sure ready to go to school this morning, waiting at the door again, and hiding his face from me when I said, “Let me look. If it’s too bad maybe you shouldn’t go to school.” He said, “Aw Maaaaw, ” and laughed and ran away. Okay fine. Go. GO to school… then I can just sit here and wait for them to call me to pick you up.

So I decided to be proactive. I just called school and warned them. His lovely teacher said, “Well, if there is any fresh red blood I’ll call you and we can talk, otherwise if it’s just old blood…it’s got to go somewhere, so that’s fine. Have a great day.”

okay then…

All Over but the Uniforms

Summer is almost at an end. We’ve been busy.

Summer School for Jake

was awful. I’m not sure how it could have been worse. Jake did not get along with his aide, the regular teacher was out on maternity leave, school was, at the last minute set up on a different campus, the bus driver was scared of Jake, and Jake seemed to be in a permanent state of “episode”. The last day of school I broke down in tears because the aide told me I could not take home Jake’s icon book. It was resolved, but not before I made an ass of myself emailing the director of Special Ed trying to figure out what possible reason they had to deny a kid the chance to communicate by keeping a folder filled with laminated construction paper in a box inside a locked classroom. Of course the aide somehow got it wrong and we were allowed to take it home.

Lucy’s Birthday(s)

Lucy had I think maybe 5 birthday parties. One with grandparents, one at daycare, one with her favorite babysitters and a buddy, one with her cousins and some close family friends, then finally the last one with her friends in the backyard for a barbecue. They were each special in their own way, but in the future I have decided that you may not have more parties than whatever half your age is (so she should have had 1.5 parties max!) *and* if you want more than 3 you must plan the rest yourself. That should hold her off until she’s 10 or so I think. I made cupcakes, I bought cakes. I bought decorations, I made decorations. At her last party, which had the theme “Princesses and Pirates”, I was gung-ho that I went to Michael’s and spent more on craft projects than we spent on food. I spray painted little boxes which the kids decorated with sequins, foam stickers and such. We called them treasure chests.

Travel

We didn’t go as many places as I thought we would, but we did manage to hit the Tahoe basin for every major weekend, and for a week long trip just a few weeks ago to celebrate Descartes’ 40th birthday. He refused to let me throw him an actual party, but luckily all of our friends are turning 40, so he still gets to celebrate everywhere he goes. All of our plans changed at the last minute due to major high winds at the campground, so we ended up back in South Lake, so he did get to have a FAB-you-lus dinner at the Un-Buffet. It was not ungood and it was not unbad. We had fun sampling fairly decent food and spent more on cabs than we did on dinner

Jake had another round of his favorite thing ever.. Camp. He had a fantastic 1:1 aide for the week, and we actually sent him to the 7 night 8 day camp this year. He came home dirty and snotty and happy (The picture does not indicate much happiness, but that kid was so tired he could barely stand up). His 1:1 actually said “It was a pleasure. We had a great time. He ate a lot, and he loved going on the nature hikes.” He soooo did not need to say those things. I didn’t get even an ounce of that feeling when someone is trying so very hard to come up with a nice thing to say.

Family

We got to spend time with all three sets of grandparents, and our Tahoe family of course. I think that our extended family has a good picture of what our life looks like these days, and each little branch of family, in their own way, has figured out a way to support us.

It’s also been wonderful to realize that our friends are becoming more and more like family. I think we are coming back out of our shell.. that hard coating we put on a few years back when we felt a little alone in the world, and a little (or a lot) burned.

Back-to-School

WunderSkool for Jake begins next week. We have a transition meeting and a bunch of paperwork, and I still have no idea about transportation times, but it will be a fresh start and every time we talk about it Jake gets this little squinty eye and a half smile. I have manageable expectations, but for the first time in a long time I have a bit of hope. I think Jake may actually be heard, and possibly better communicate his own needs. My mom said she hasn’t heard me this happy in a long time. I don’t know if I am “happy”, I mean I want to be, and of course I am, with many many things, but “happy” sounds like “easy” and “simple” and those things I do not know much of lately. I am however feeling more buoyant, and I think that looks like happy. My shoulders don’t hurt so much from carrying the weight of the world (cue violins). And life is changing even a bit more because we made sort of an abrupt decision to enroll Lucy in preschool. She did a little interview/trial run last week, and she loved the place, and they seemed to like her too. She will also start at the end of August and she will have French and art and coloring and running about and carpooling and backpacks and the whole deal. She is so, SO excited. I am happy for her because she is ready to go, but I am sad as well because this last year was not the same kind of year Jake had at that age. When Jake was 2-3 I went to the zoo and museums and the park and the library and out to lunch and every where. Lucy got to watch videos in the car as we drove back and forth to Jake’s school averting disaster. I didn’t get to jump in the car with her and take her to the City for a cable car ride for fear that we would be called back, and I certainly never ventured to the Aquarium. I cannot even count the number of miles I drove to Jake’s school last year. I know Lucy will be fine. She has done enough “fun” things to not hate me, but *I* will remember that the last year she was ever at home..the last year she ever had without school… she was trapped in the beige
no-so-mini Van. It will sting a little less when I see her happy face after her first day of school I’m sure.

and so tomorrow Lucy and I head over to her new school to purchase a few uniforms. Tomorrow I place the order for Jake’s back to school pants and shirts.

and we start a whole new chapter in our little life.

WunderSkool Here We Come!

Jake has been accepted into the program at WunderSkool! I know it may not truly be a panacea, but today it feels that way, and darn it, I am gonna take that feeling and savor it for at least a few days. We already have the transition meeting arranged.

and… there might be room for Lucy at the local awesome day school… what to call it? Maybe Woodstock? They will call me in the morning.

and…I found sweatpants at leTarget for Jake for to use as pajamas at camp.. he leaves *tomorrow* He is very excited.

and… no one is sick at my house

Howz ’bout in celebration y’all forward an email to every person you know and get them to sign that petition we’ve got going!

Ask Mrs. Obama to help form an Autism Corps. Please sign the petition http://tr.im/sa3y and while you’re at it, join the Facebook group! http://tr.im/sbWD

Have a great day…. I am!

All Treats

Jake and Lucy are home today… no school. We may head to the Cal Academy of Sciences

if we can get it together. It’s chillier this morning and it’s rainy and overcast.. and Californians are bad drivers who cannot figure out how to drive in the rain after all these years, so I am always loathe to get on a highway but this is all beside the point…

Jake said “Trick or Treat”.

Jake SAID “TRICK OR TREAT”!

His bus driver told me that he said it on the bus yesterday afternoon. His teacher was talking with all of the kids as they were being pinned down. buckled in.

She asked the kids “Who’s going to say Trick or Treat?” and they were answering, and Jake at the front of the bus said “I say trick or treat.”

and from the back of the bus his driver, who speaks English as a second language, said “Jake! I heard you say trick or treat.” and ran up and hugged him.

She told me all about it when they arrived in front of our house, and I mostly believed her, and wanted to encourage Jake so I asked him if he had said it… and he smiled and giggled!

then

this morning I asked him, when it was just the two of us lounging on my bed, “When we go out to night to get candy, what do you say?”

and he said “trick or treat” and he smiled.

*************************

appropriate language, answering a question, responding to a general query put out to a group, 

timely responses 

what’s happening? is he talking more often? will there be more?

hope is such a painful wonderful emotion.

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.

Turning Corners in a Round House

last night as Jake settles into bed:

He is kicking the bed frame which then bangs against the wall and shudders the house, making it sound like he is thrashing about when really he is criss-crossing his legs, practicing really a new skill of making one side of his body cooperate with the other. His toes cling to the bed post as he creeps them up and down lying on his back looking at the very dimmed light fixture. I crawl in next to him for a moment, because I miss him, this calm him, because I want relationship with my own son who won’t can’t make eye contact with me. I want to at least feel close to him, and since he isn’t flailing about I think I can. So I lay on the twin bed. He is nearly as long as I am, but he is all bones and muscle and joints. Even his frame is hard to hold because he is angular against my motherly roundness. I hug him and he rolls into me, his face next to mine on the pillow.

me: “Jake, I love you so much. I’m so glad you’re feeling better.”
Jake: “Mmph” said with a smile
me: “Jake I love you. Can you tell mommy ‘I love you?’ Can you say ‘love’?”
Jake: clearly “Love.”

He is happy this morning, lots of happy sounds and running up and down the stairs , jumping and smiling at the sight of a fresh cup of milk or more cheerios. Maybe he is back from where ever he goes when he is so upset in his own body. He’s back and he may have learned more new skills again. It was hard this time. Physical injuries and a baby sister who felt abandoned. Descartes and I only fought one time, and only for a moment, so we are better at this, but we’re still learning.

There’s no rulebook for our child, or this life. There’s only slowly moving forward, hoping that the next time we come more prepared, with a more fortified army of caretakers, medications and resources. Because no matter how far we’ve come, no matter that this morning it feels like it is over, I know another episode is coming; my calendar says next week.

Out on the Town

Descartes has just taken Jake out in the car again. Jake was screaming and crying. Throwing himself around on the kitchen floor. I gave him 1 mg of Atavin at 3:45 as recommended by his psychiatrist. It has done nothing to relieve whatever “this” is. 

Every day 5:30-8:45 Jake screams and cries. Have you heard of sundowning? It is a term most often used in describing symptoms which occur in those afflicted with Alzheimer’s. Maybe that’s what is going on for Jake. 

I still managed to clean out the toys upstairs and get a flank steak marinated which Descartes grilled when he got home. Had I actually gotten a hold of Descartes at 4:15pm when I tried texting him I would have begged him to come home because Jake was so out of control. Then I made the kids dinner and half way through, Jake started smiling and laughing. Then he played in the back yard happily… and then he lost it again.

I am so tired. Emotionally drained really. and poor Lucy..all potty training has stopped. She is telling me she is a baby. 

The only way things feel sane is to have someone come to help us every day. The fact is we just cannot afford to have that much help. Yes we get respite hours, but the reimbursement rate does not cover what an aide actually costs.  We never have help over the weekend Friday through Sunday we are on our own, because **really** shouldn’t we be able to take care of our own children? 

I just want my arm to be healed a little more before we start cutting hours. I know this episode won’t last forever, but it better end before it breaks the bank.