30 July, 2009

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!

29 July, 2009

Only Want to Say It Once.

I think the visit to the WunderSkool for Jake went very very badly. He was agitated and uncooperative and hesitant and untrusting for half of the time we were there.

He seemed really excited as we drove there, used lots of happy sounds as we entered the office... then poof, basically non-compliant, "very busy" and unable to even go into the classroom or walk. I left to go to the staff room so he could be observed without me around. The director came to me not too many minutes later, "I hate to be the bearer of bad news, but we really don't seem to be able to get him grounded." and suggested that maybe we see him another time. I got tears in my eyes. Then I pulled it together, and asked if perhaps I could go to help him transition. She was very kind and said that she is always surprised when children go willingly and comply with all of the demands of strangers, and that perhaps Jake's response was actually more "typical". As I gathered my things to walk back to his test classroom, the director said she wanted to see more of the child that I wrote about in my notes to her, and perhaps that would give them a better idea about Jake.

I sort of let it slip out that I have very reasonable expectations that nothing good is ever going to happen for our family.

By the time I began to walk towards the class Jake was actually calming down, walking in the hall with a teacher/aide. I took his hand and we walked nicely to the classroom where I asked if we could work on the computer. The computer is something he loves, and they have spent very little time on them in his current class. I was hoping he would not be reminded of anything negative, after his rotten summer school experience. He sat attentively in the chair next to me. He signed for more when I asked him if he wanted more music. He touched the mouse when I asked him to touch it if he wanted a new music piece. When the Nutcracker Ballet started playing he started to get up... his sister has a little device that plays this if she picks it up, so recently he's heard that one A LOT. I chose another song for him and he watched the animation on the screen while the music played.

Then we "read" a book. Chika Chika Boom Boom (they couldn't find Jake's favorite book I hate Brown Bear, Brown Bear, but it was close enough). I read aloud, and at the end of each page I chose a letter and asked him which side of the page the letter was on (remember the letters are all jumbled up on each page?). He got every one right! On the last page I asked Jake where the letters were and he touched his palm down spanning both pages and laughed.

Another child near us started to cry. I asked for "happy" and "sad" icons, and asked him how the other boy was feeling. He chose sad, then looked sideways at the child.

I asked for "book" and "music" icons, and asked him which one he wanted to do next. He chose music, then picked up a tambourine and shook it when the music came on. One of the aides asked if he would like to look around the classroom (Jake said "Yauh") Then he walked over to one of the tall cubicles and I asked him if he wanted to do some work like the other kids. I sat him down in the child's chair, and sat in the teacher's chair. In front of us were little pretend pieces of watermelon with numbers written on them (laminate cards). I placed two "slices" in front of him at a time, and went through all of the numbers 1-10,asking him to choose "Which one is number __?" He got them all correct. What was nice is that for one of his responses he sort of flicked the number three card towards me, and one of the aides laughed and said "Duh mom. I'm done with this project." They actually understood Jake's subtle communication is actually real communication with intent.

We moved next to puzzles, and I gave up my seat to one of the aides. They worked on three- piece, large-knob puzzles which Jake has done a million times. I told him, even if he couldn't get the piece into the space, if he picked up a piece and showed us where it went that would count too. He did this twice, but otherwise he actually, eventually, placed all of the pieces into their actual spaces without much help at all. The aide was so patient, and when he got the last one in she asked for a high five, and Jake complied...with two/five.

Our visit came to a close, a full 40 minutes late (perhaps that's how long they had tried to calm him down?) I told him we were going to go home, then walked into the office. Of course he had heard "home", but had not been told "Sit in crowded office while my mom chats with the director", so he was flailing and stretched himself out across the office floor. He did however lean in to hug the director and both of the classroom teachers with whom he had worked. When I stood to leave he ran to the door of the office and waited, then walked calmly out to the car.

I came home, wrote the thank you email, and then as I hit send, got a call from Jake's school district, who assured me that she was certain that Jake's visit had gone well, despite my story of our visit.

I don't know when we'll hear back. The pit of my stomach is awash in acid, and life goes on: Jake goes to Camp Awesomeness for a week, then our local district begins on Monday the 10th. I am still trying to decide where to throw thousands of dollars towards Lucy's preschool education, and one of the schools on our short list starts July 31st, and the other has a wait list? Perhaps January (our original plan) may be a better plan.

I just asked Jake if he liked "that school". He said, "Yuh."

It will all be okay or it won't.

after talking with Sage and Squid, maybe it's possible that the visit didn't go as badly as I think it did, and Jake was able to show them all of who he is, good and bad.

26 July, 2009

Our Anniversary

Descartes and I have made it another year. Phew. We had a lovely dinner at a New Orleans style restaurant with delicious food and fantastic service. I told the restaurant that it was our anniversary and we had a great table and were each promptly served a glass of champagne. I love champagne, and I really appreciate it when businesses do that one small thing that can make a customer feel special. It probably did not cost them very much for that champagne, but I will happily recommend the restaurant to anyone.

We took CalTrain home, it had been our plan all along, but it felt rather decadent, almost as good as a car and driver. Unfortunately I had us waiting for a week-day scheduled train and it was a Saturday. The ten minutes we left the tracks so I could use the bathroom was the time when the train actually came... so we waited another 45 minutes or so, chatting on a bench. We don't get to do that very often, and certainly not when we are both a little filled with good food and famous Hurricane rum punch.

23 July, 2009

Things that Make Mommy Want to Double up on the Wellbutrin

  • Clock reads 7:54am and I can see that with my head on the pillow next to Descartes' head, and I can see he has his eyes closed. Jake should be at school at 8:00am. [family flies out of beds and races around]
  • Being told that Jake "hit" a woman in the hall yesterday.
  • Upon further questioning, discovering that perhaps Jake just had his arms spread out wide and grazed her as they were walking through the wall.
  • Being told that the difference between hitting someone and grazing them as you walk past is "semantics".
  • Trying to leave an environment before you "graze" someone, and trying to endure people who want to chat with you.
  • Bursting into tears in front of your toddler.
  • Explaining to a little sister that their big brother is very unhappy.
  • Hearing the little sister explain to me that "Jake just doesn't want to go to the classroom with BB because I don't think hims likes her."

21 July, 2009

Christina Chew Posts on the Autism Corps

Kristina Chew has posted an article at Change.org where she shares our petition and how her own family would benefit from one-to-one care for their son Charlie.

I am without childcare this week. Jake's aide spent part of the weekend in the hospital with a high fever, victim of the flu (I wonder if she got her flu shot this year?) . She was tested for H1N1 and thankfully does not have it. But back to my point... I have no childcare this week, and I will be fine.

The reason it will be okay? I know it's only one week. My husband will take on a bit more of the evening routine, knowing that I will have a little less patience in me after competing the witching hour on my own. He will be kind when he is served the tuna noodle casserole I made yesterday. I can do anything for a week, possibly a year, but what if I felt the desperation of knowing that there was no one to help me...ever...

What if I was a single mom? What if I had more kids or more than one child with autism? What if I had to make a choice between spending money on childcare or feeding the child?

An Autism Corps could make a difference for families. It could change the life of adult autistics who just need a little (or a lot) of support. To gain a perspective we don't have, Shannon and I have been joined by Rachel Cohen-Rottenberg and Lindsey Nebeker, two adults on the autism spectrum to work on the Autism Corps strategy. This is important because many adults with autism do not feel represented in the current dialogue.

I am reminded daily by my son's pile of clothes and shoes that are too small, that he will grow to be a man, and that man will still have autism and will still need help. He will also, most likely, out-live me, leaving more than just a week without care.

Please sign our petition http://tr.im/rNdE

18 July, 2009

15 July, 2009

AND... patience wins again.

Bursting with happiness right now.

Happy little girls (Lucy and her friend Lil' Miss) destroying the living room and sending dollhouse contents across the hardwood floor.

Jake playing quietly in his room or in the backyard with his rocks and a tambourine.

and one phone call, one little call...

that let me know that Jake can be evaluated by the Amazing school!

Life is full of possibility again! He will visit the school two weeks from today to see if he s a good fit. Phew. I can breather again.


and to top it all off, our petition was Site of the Day at Terri's Special Children blog at About.com

follow AutismCorps on Twitter

14 July, 2009

Hope. Fail. Wish. Cry. Pray. Wait.

I was sent a prayer that was attributed to a Saint today, and of course I had to research it; please don't forward me stuff, seriously. As it turns out it was actually a New Age well-wish type thing, but in doing my brief research, I did find another prayer, and while I think I was a little embarrassed*** to post a prayer on my blog it spoke to me:

It was written by St. Teresa of Avila who lived in the 16th century:
Let nothing disturb thee. (Nada te turbe)
Let nothing frighten thee. (Nada te espante)
All things pass away. (Todo se pasa)
God never changes. (Dios no se muda)
Patience attains all things. (La paciencia todo lo alcanza)
He who has God lacks nothing. (Quien a Dios tiene nada le falta)
God alone suffices. (Solo Dios basta)
And today it spoke to me, because it feels like there are so many things out of my control in my life right now. I have a little, or even a lot of input into each, but the final way things go is dependent on someone else, and I do not like that feeling. I want to shape or fix or make happen Jake's fall placement for school, my precocious daughter's defiant behavior, my husband's need for a challenging career, the ever-growing amount of paperwork, the budget cuts, my son's toilet training, our summer camping trip, the amount I pay Verizon wireless each month.

When I visited a possible new school for Jake last week I had an amazing feeling of hope and
optimism for nearly 24 hours, from the time I made that appointment in the afternoon, then the next morning through the interview and the visit to the classroom and the entire drive home. I felt buoyant through phone calls and emails... until I got an auto-response from the Director of Special Ed saying she was out on vacation (and therefore unable to give approval for Jake to be evaluated by the school).

My day was so carefree. It was shocking how much I got done the night before that visit, how pleasant nearly every moment was, how much easier it was to deal with a pile of dirty dishes, or a child who would not go to bed. Everything felt smooth and shiny. I was saddened to figure out just how much Jake's development and school placement has been weighing on me. That it weighs on me every day and impacts everything I do. I also realized that people who don't experience this feeling really do have different lives, which I like to pretend isn't true. It must be so much easier to go through life like that. I almost remembered that feeling I used to have when Descartes had just finished business school and we were newly married and I had this fantastic career thing going (one that paid me): I used to be invincible. And then that damn auto-responder kicked back that out-of-office message and I was left again with that sinking feeling. And again our fate is left to someone else, no matter how many emails I write, I don't get the final say.

I just got an email from another possible placement who welcomes me to visit the school but warns there are no Fall placements available, because of course this is all so last minute.

back to my other business now... wish me luck with the patience part.

***I don't think it's a secret that I consider myself a Christian, that I have taken a few leaps of faith, and have even officially joined a church (thanks sister :)), but I think sometimes I am embarrassed by faith because I cannot pin it down or prove it with science. I want to have faith, so I choose to, or I try to be open to receive that gift, but it doesn't always sit well with me, and sometimes I am also quite convinced that I am just a bunch of cells waiting for apoptosis. I am not one of those pray on the street types of people. I am not ever quick to think that I know the only way, at least when it comes to religion, and I am quite certain that, having made the choice to believe in a higher power, I am not the one who should judge others.. not who they love, or what they call their God, or how they pray or what they eat or the house they keep. As long as your beliefs don't harm me, or my children.. or your children (and that's a fuzzy line) then believe whatever you want, and let me do the same.

12 July, 2009

Taking Action: Autism Corps

Because having a special needs kid and a toddler and a husband and searching for a new school for Jake .... and SUMMER just isn't enough, Squid and I have decided to take on this little thing: We have created a petition asking Michelle Obama to meet with us, to discuss creating an Autism Corps based on the Teach for America Model.

There are not enough trained professionals to serve all of the families who are affected by autism, and when we can find help, it is often out of reach financially.. because let's face it, if you add "bridal" or "special needs" in front of anything it costs at least twice as much. There are adults with autism who just need a little help, and there are single-parent families with three autistic children in three places on the spectrum who would certainly benefit from even a few hours of respite or therapy. An Autism Corps could allow parents a break or help an adult with autism live more independently. I know this doesn't address the entire special-needs community, but it's a start. Let's start somewhere.

We welcome feedback from all families affected by autism, and from autistics themselves. How could the Autism Corps make a difference in your life? You can comment below, or even better leave a comment next to your signature on the petition.

Petition excerpts:

"We would like to propose that Michelle Obama meet with Shannon Des Roches Rosa and Jennifer Byde Myers, two parents representing two very different autism families' perspectives, to discuss creating an Autism Corps or other measure that will address one of the most pressing needs of families affected by autism: one-to-one in-home support.

"We would like to discuss taking those three factors and combining them into a nationwide organization dedicated to training volunteers to aid kids and adults with autism: an Autism Corps, based on the Teach For America urgent action model, to provide autism families in need with between four and fourteen hours of weekly care."

Please forward this post to anyone who might be interested.

07 July, 2009

How You Know When Your Mom Watches Late Night Television

You get the following email... notice the time stamp

On Tue, Jul 7, 2009 at 12:34 AM, wrote:
Hi jennyalice
I just ordered you the Shark steam floor mop (the new fancy one)... I think you will like it.
It should arrive in a week or so ...

We are very sad around our house because our doggie died yesterday, so the Shark steam floor mop my mom ordered is really a very sweet gesture. I'm in my offoce (Peet's Coffee) so I can't type about Bilbo the dog because I already cry in public often enough in my town.
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