Wednesday, May 12, 2010

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:

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.


  1. Oh, I love that last paragraph:
    "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." What a great recipe for surviving in this world, in general. And part of protecting ourselves involves surrounding ourselves with our fabulous posse of loving women friends, given to us by God's loving grace! XOXOX0

  2. Any time you forget how well you cope and how hard you work, advocating for Sophie AND "just" being a mother, you let me know- I'll set you straight.

  3. I think you're coping very well.

  4. I look at the title, and I think,
    there really is no in between for you most of them, any time.

    wishing doesn't make it so.

  5. Sending you wishes that everything goes in Sophie's favor. I know how hard it is.

  6. Based on what you quoted I looked that book up on amazon and it sounds like one I need to read. Any other reading suggestions in the same category? Of course, I *need* to get a couple more selections to qualify for free shipping;)

  7. sleepymama -- Email me at elsophie at gmail dot com for more book suggestions.

  8. Your post just made me laugh and that is a good thing because this has been one heck of a week. Totally understand you on the parenting book. I have read them all. Now if there was just one that children could read and get with the program.

  9. School has also been incredibly difficult for us. I don't even know if I can put it into words--but the passage you quoted from the book resonated with me.

    I still can't decide if Robert's lack of diagnosis was ultimately hurtful or helpful when dealing with the school. Because there was no diagnosis, I could constantly remind the school professionals that the basis upon which they made their conclusions was not hard and fast. If no one really understands Robert's medical condition, no one really understands what, exactly, is going to help. The variability in his symptoms and the manifestation of his intelligence was another lever I used to get what I wanted.

    You have to make them feel doubt about their conclusions. You have to point to specifics in your child's behavior, performance, condition, and so on to keep throwing the obnoxious people off balance.

    We also had the benefit of a school superintendent who was intent upon inclusion education. From the top down, he pressured all of the schools to start developing curricula and programs that included students. It was an enormous cultural shift, and we were working out Robert's program during the most resistance to it, but, ultimately, we have what we want: the ability for Robert to go to school, where he responds positively to the influence of children of a wide range of abilities. He needs the company of typical kids, too--they support him and their activity spurs him on.

  10. .... it's almost like you DID get your exercise - only without the endorphins and sweat flowing.

    My husband is a teacher so I hear his point of view - quite often. BUT he's working with nearly adult children of middle to upper middle class families and these kids don't have special needs - unless you count a sense of entitlement as a special need.

  11. Advocating for my child's educational and mental health needs is the hardest thing I've ever done. The most stressful part of my life.

    Great post.

  12. Your job of mothering Sophie should not be made more difficult by bureaucrats. Damn it!!



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