Driven Crazy or Crazy Driving

I woke up this morning fully intending to craft some kind of meaningful post here. I also woke up intending to finally begin exercising hard. I woke up determined that I wouldn't yell at the boys to hurry up, get their teeth brushed, get their shoes on and make their beds. I woke up knowing that the whole day stretched in front of me, with all three kids in school and no appointments or conference calls for my job or grocery shopping to do.

It's now about noon and I've done none of those things. The boys were their usual desultory selves in the hour before their carpool came and I yelled a few times. Hollered, really, because it wasn't like I was mad. Boys generally like to look out the window at the squirrel hanging upside down or fiddle a bit with their PSPs in between the necessities of life. Those parenting books that tell you not to yell, not to bargain, not to bribe -- well, they're full of shit.

Sophie had a big seizure and fell back asleep so I dropped her off at school, finally at 10:30. If I don't exercise before 9 am, well, let's face it, I'm not going to exercise. While she slept, I didn't do anything but talk on the telephone with an LAUSD bureaucrat. There's still much to iron out for Sophie's transition to a new school in the fall, and with her IEP coming up on Friday morning, lots of anxiety. I recently reread a bit in Barbara Gill's Changed by a Child: Companion Notes for Parents of a Child with a Disability this passage:

School

Dare you see a Soul at the White Heat? 

Then crouch within the door -- --Emily Dickinson

Here is what a few mothers have said about their experiences when trying to secure an appropriate education for their child.

Inga: I felt I was going crazy. Only once before in my life had I felt so low, and that was the year my mother died. Sherrell: I was constantly depressed. I gained twenty pounds; I couldn't focus on anything. Jennifer: For the entire year after they threatened me, I did not go to school unless I absolutely had to, even for concerts or programs. Every time I walked in the door, my eyes would fill with tears. Andrea: In order to avoid doing what we wanted, they attacked us at the meeting. I was completely unprepared and totally humiliated. Even now when I think about it I feel ashamed and enraged. Toni: I feel the teachers and I are rivals instead of partners. The message I get is that they know what's best for Tom, and that I am not doing everything I should be doing for him. Brenda: My experiences as a teacher led my husband and me to adopt two boys with disabilities. The only times I've regretted doing it have been in relation to school -- the years when things were horrible at school.

These women are describing anguish, suffering and despair at the deepest level. They are not an isolated, unstable few who cannot work with other people or solve problems effectively. They are diverse in backgrounds and education, and what they say is representative of the experience that mothers have with school systems. Something is clearly very wrong.

Today, if I am involved in a struggle at school, I will know that I am not alone and I am not the problem. I will recognize that I am engaged in a real battle in which my child's future and my mental health are at stake. I will get help. When I go where my risk of injury is high, I will protect myself in order to protect my child.

Most days I feel in control and empowered -- by my work, by my children, by my husband. On days like these I feel like if not already completely broken, I'm falling apart.  Typing out the above words helps (especially the Emily Dickinson quote!), because it affirms that THIS IS HARD. I'm not sure why I need an almost constant affirmation that I am indeed coping the best way I can, but I'm grateful that I got it.

Clearly, the remote control helicopter was a great present

The Oliver Dessert (graphic photo follows)

May 10, 2001

Last night, I bent over Oliver to kiss him good-night. He said, This is the last night I'll be eight years old.


Yes, I replied, and this is the last time I'll kiss my eight year old son.


Nine years ago today, I gave birth to my beautiful third child, Oliver, who I liked to call my dessert. It doesn't seem possible that nearly a decade is gone, and as each year passes I think to myself, hoping against hope,  he's still really little, he's only six, he's only seven, he's only eight. I'm not sure I can say he's only nine! He's NINE? I just can't believe it, really.

In lieu of a long birthday celebration, I'll give you this link to click because I think I captured my Oliver, my dessert, last year quite well.

Happy Birthday, Big O. I love you so!

Happy Mother's Day!

Here's a photo of my mother, taken only a couple of years ago. Isn't she gorgeous? It seems almost silly to write a paean to one's mother on a blog, so intense and special the relationship between mother and daughter. But the main thing I'd say on this day, when we all honor our mothers is that I am grateful to my mother and filled with love for her. I can't remember a single instance as a child of feeling alone or sad or excited and filled with joy that my mother didn't share with me. She was always there, with her uncommon good sense, her passion, her compassion, her sense of humor, her strength and her love. She was always my fiercest advocate and biggest champion, and even today, despite our differences, remains so. Everything I do now, as a mother, I owe to the seeds she planted within me so long ago.

I love you, Mom!

This morning, I stayed in bed until after 9:30, sleepily aware from under the covers, that the television was on and pots and pans were clanging in the kitchen. When I finally woke up, I was greeted by a very loud chorus of Happy Mother's Day! Henry gave me the smoothest, smallest rocks that each carried a message, Oliver had made me very colorful cards, illustrated in his inimitable way with a rock band, and Sophie gave me a gorgeous plant. The Husband whipped me up real eggs Benedict and a cup of perfect coffee.

Happy Mother's Day to all of you!

Birthdays and Poetry

I read today that it's the poet Gary Snyder's birthday. I read a lot of Gary Snyder in college, not only because I loved his work but also because he was a Zen Buddhist and translated Chinese poetry. Back in those carefree days, I studied Mandarin Chinese, not because I thought it would help me to get a good job but because I loved Chinese poetry and thought that I'd learn the language and read it in the original. I have one more thing to say about that aspiration: Laughing Buddha HA!   So, happy birthday to Gary Snyder and in honor of old aspirations and Chinese poets, here are three translations of one poem by Meng Hao-jan. Night on the Great River [three translations]
by Meng Hao-jan
(I) Steering my little boat towards a misty islet, I watch the sun descend while my sorrows grow: In the vast night the sky hangs lower than the treetops, But in the blue lake the moon is coming close. [translated by William Carlos Williams] (II) Night on the Great River We anchor the boat alongside a hazy island. As the sun sets I am overwhelmed with nostalgia. The plain stretches away without limit. The sky is just above the tree tops. The river flows quietly by. The moon comes down amongst men. [translated by Kenneth Rexroth] (III) Mooring on Chien-te River The boat rocks at anchor by the misty island Sunset, my loneliness comes again. In these vast wilds the sky arches down to the trees. In the clear river water, the moon draws near. [translated by Gary Snyder]

LA Moms Blog, Guns and LA Unified

I'm over at LA Moms Blog today, blogging about guns. Imagine the google search engine prospects!

Little Red Schoolhouse

The good news is that yesterday I went to visit a possible school for Sophie to attend in the fall. The school is an all special needs kid institution-like place, the only one in the city that I haven't visited (and after visiting said schools, I generally open my car door, sit down and rest my head on the steering wheel while sobbing either quietly -- the early years -- or dramatically -- the current years). So, in anticipation, I wore a bullet-proof vest to protect my heart, a leaden hat to keep my wayward thoughts inside, and wings of foil to escape or foil) despair. My good friend Suzy C. again took pity on me and came along for the ride.

Guess what happened?

The school was GREAT! There were lots of trees and grass everywhere; the halls were open and wide and very clean. The teachers were calm and the young people seemed happy. There were no closed doors that when opened revealed rooms of young men spinning about or banging their heads against walls. There were no large posters from the 1970s anti-smoking campaigns of half-cancerous faced women with ash coming out of their mouths (I'm not kidding -- I saw it once at a middle school!). Instead there were happy posters on the walls and kids grouped in circles, working together. One large boy, or young man, sat at a computer playing guitar Hero and dancing in his seat. The teacher told us he was being rewarded for excellent behavior. Another young girl was dressed in traditional Mexican garb for the celebration later that day of Cinco de Mayo. She kept grabbing my hand and smiling at me.

I smiled back.

The woman who gave us the tour was a normal person.

Suzy C. and I marveled at everything.

I think I found a school for Sophie, and it has so completely surprised me that I might become an evangelical Christian.

Just kidding. (But I am grateful, feeling as if I've been touched, a bit, by grace).

Thursday Thoughts

I have good news to tell, but I'm at work this morning. So I'll talk to you later. I hope you're all having a wonderful day!

The Beef (and I've longed to give it up)

Thank you for all your kind words of sympathy and advice regarding the recent turn of events in Sophie's school life. It's such a blessing to have this online community, and many of you experience similar situations, struggle with similar problems and some even know the law! I feel like I have to respond in some way regarding what's going on here in California and, particularly, Los Angeles.

The fact is: the state is supposedly broke and so is the city. That means cuts, and I mean draconian cuts. California is unique in the United States for its entitlement program -- The California Department of Developmental Services is the agency through which the State of California provides services and supports to individuals with developmental disabilities. These disabilities include mental retardation, cerebral palsy, epilepsy, autism and other related conditions. Services are provided through state-operated developmental centers and community facilities, and contracts with 21 nonprofit regional centers. The regional centers serve as a local resource to help find and access the services and supports available to individuals with developmental disabilities and their families. During the last couple of years, the services provided by Regional Centers have been slowly but inexorably cut -- those services include therapies, partial diaper reimbursement, respite, after-school programs, etc. Sophie is still a client of our local Regional Center, but she has lost most of the funding she used to receive. When music therapy was cut, I applied for and received a grant and partial scholarship from the agency that works with her. We no longer receive partial reimbursement for diapers, so I pay completely for that. Most after-school programs and summer camps have been cut, and I've fought tooth and nail to retain some of the respite hours that we receive.

At the same time, the Los Angeles Unified School District is also making enormous cuts in its budget and there doesn't seem to be an end in sight. LAUSD is a behemoth, the second largest public school system in the country and probably the most ill-managed and inefficient. I have long wanted to take Sophie out of the system entirely, but there are very few (like none!) programs, private or otherwise, that would be appropriate for her. For the most part, she has been in some very nice classes, and the current one is no exception. Her teacher and all the aides work diligently and lovingly with all the kids despite enormous constraints, including now, twice monthly furloughs, the threat of layoff and a shorter school year. Sophie is finishing middle school and has spent three years on what is called the year-round schedule. This was insitituted years ago in an effort to ease over-crowding and basically allows a physical school to admit three tracks of students year-round. Sophie's track -- the infamous B -- dictated that she attend school July and August. She qualified for an extended school year (ESY) which in this case, meant that instead of being off in September (so Track A could start up), she went to "summer school" -- half days for four weeks. Then she had NO SCHOOL for the entire month of October. She went back to school in November, December, January and February and then had two months OFF -- March and April. I just assumed that she would go back to school in early May and stay in school through the summer before transferring to a regular schedule in a local high school.

But, NO. The school she is leaving is switching to the regular type school year which means she will finish in late June and be OUT OF SCHOOL for the entire months of July, August and now, most of September, because the LAUSD has pushed the opening of school later in September because of CUTS.

Whew!

For the educators out there or those who think the IEP is a legal binding agreement and that Sophie is assured of an extended school year: Well, technically, it is a legal binding document and she is eligible for an extended school year, but not when there isn't going to be an extended school year. I suppose if I had the energy or the time or the money to hire an advocate (and I'm looking into it), I could press for those things. I could press for the letter of the law.

But the BEEF is that fighting the system has a time and a place. Remember that Sophie is fifteen years old. I have an IEP for her next week and I figure that it's the ninth IEP I've had in Los Angeles. The "services" we're going to get and the things I should "demand" are mediocre at best and, frankly, not worth the fight. I did write a letter yesterday to Steve Lopez of the Los Angeles Times, in an effort to give voice to the voiceless. I told him a little of our story and tried to make it representative of many -- I impressed upon him that these budget cuts are hitting the most vulnerable and that families out here, families like mine and those in far worse circumstances, mothers like me are at serious risk. I urged him to write about the disabled, especially children and their caregivers. What I'm hoping is that he will and that we might get not just a response from the government but, more importantly, private foundations and wealthy individuals who might step out and help all of us out.

I'd like to get another job and really contribute to this world, but as long as I am tied to the endless care giving that I now have, I can't do that. You know how much I love Sophie, and being her mother and caring and advocating for her is the most important work I'll ever do. But it's too damn much at times, and this time, due to a cascade of circumstances it's about to blow.

I'll take it one day at a time. But if I won the lottery, this is part of what I'd do:

1. Pay off my debts.
2. Get full-time help for Sophie.
3. Start a non-profit foundation to fund a school for kids like Sophie. The school would be beautiful -- a place of beauty and nature and music and art and dance. There would be academics for those who could learn to read and write. There would be movement classes and hippotherapy and yoga and animals to take care of. We would have a garden and delicious food. There would be trees under which to sit and an accessible tree-house to sit inside. The school would be called Just Because and the children and young adults who attended would be there just because. They would be there just because they are alive, have integrity and are worthy of these things. There would be no expectations of success or employment or integration. They would be there just because. 

Bill Murray Reading Emily Dickinson

A man who always makes me smile and one of my favorite poems, via the wonderful Speaking of Faith website:

Another reason why I miss New York

My mother is from Brooklyn and grew up there, living at home with her parents and four siblings in a tiny brownstone apartment until she married my father. I haven't written much about her side of the family, as I've always identified more with those southern Italian genes passed to me by my father, but it's not for lack of interest. My mother's mother, my grandmother Ida Mae Ross, was born on a cotton farm in the Mississippi Delta. She was working in a general store in Memphis, Tennessee one summer when she was eighteen years old, when my grandfather, Charlie Haddad, an immigrant from Syria, walked in as a traveling salesman. Grandpa Haddad was tall, dark and handsome and my grandmother landed up marrying him. He took her back to Brooklyn where she learned to speak Arabic and to cook Arabic dishes for him and his mother and sister. While I never met my great-grandmother, I did meet some of the sisters and remember them for their wet, sloppy kisses, plastic-covered furniture in their parlors and fuzzy hard candy that they pulled from their pockets and offered when we visited. That's all I'll share for now, and the inspiration for this tidbit is below, a video that I watched over at secondsistersuaviloquy that not only made me smile and feel happy but also reminded me of my grandmother, who was the kindest, most gentle lady you'd ever know and who I remember could whistle like a sweet bird.



(I so miss a brownstone stoop.)

Nervous Breakdown

That's me there, with my head on the desk. Those papers? They're from insurance companies and Medi-Cal. The lady on the right is an angel in disguise -- my good friend Suzy C. who I spoke with on the telephone today and who had some pretty great words of wisdom.  As a fellow mother of a child with special needs, she gets it, and while willing to help me out in my time of need probably felt a tiny bit grateful that it wasn't her with her head on the desk -- this time.

Who is that? That's me, a little later in the afternoon. I was on the phone all day with LAUSD, my daughter's school and learned that her school year has been shortened and she WON"T be in school this summer after all. If you remember, she's been OUT of school for the past nine weeks and today was the first day she was supposed to go back. Instead of heading to yoga and the grocery store, though, I learned that her aide was furloughed today because of budget cuts so I kept her home. I also learned that school ends the third week of June and doesn't start back up until the middle of September.

I then dug the rose tinted glasses that I actually wore in eighth grade, when I was at the peak of adolescence, out of a box, donned the pink and white suit and the white gloves, my handy-dandy gun and ----

You figure out the rest.

Rhubarb and M.F. K. Fisher

I bought some slender, ruby stalks of rhubarb the other day and a basket of strawberries. I cut the rhubarb into 3/4" crescents and the strawberries in half and tossed them together with a bit of sugar, a bit of cinnamon and a bit of water.

I squeezed the juice out of one Meyer lemon and tossed the whole mixture together.

Then I threw the combination into a lightly buttered pie plate and topped it with brown sugar, flour, cinnamon and cold butter.

I baked it at 350 degrees and served it warm. We all ate it for a couple of days for snacks, after dinner and even breakfast. 

I am more modest now, but I still think that one of the pleasantest of all emotions is to know that I, I with my brain and my hands, have nourished my beloved few, that I have concocted a stew or a story, a rarity or a plain dish, to sustain them truly against the hungers of the world.

M.F.K. Fisher

In keeping with yesterday's post,

Hilton Head Island, summer 2002

I received this in my Inbox today from Word of the Day:

Grant me daily the grace of gratitude,

to be thankful for all my many gifts,

and so be freed from artificial needs,

that I might lead a joyful,

simple

life.

-- Edward Hays:  A Book of Wonders