Guess What?

I have some new information to process, which is another way of saying I feel as if I’ve been kicked in the stomach. I did a lot to get this information, and on this Thanksgiving eve I am grateful to have it…but it’s going to take some processing.

As I wrote in Seriously?, I’ve been seeking help with finding the right schooling and services for my daughter. Part of that has been getting a detailed assessment done, the first in several years, independently of the district and the doctors who did her earlier ones. We finally got the results yesterday.

Without going into details, let me just say that they’ve come up with a theory about her issues that makes a lot of sense, feels intuitively right, honors her strengths…and means that for the last five-plus years we have been working with a completely wrong diagnosis.

Pop quiz, my friends. What’s going on with me emotionally right now?

A. I’m proud of myself for intervening the way I have, getting her into counseling, and pushing for objective assessment in response to my judgment that there was something else going on. I am aware that things would be much worse if I had not acted with courage in certain ways.

B. I’m blaming myself for taking this long to see what is needed and for all of the imperfections and delays I introduced into the process. I feel overwhelmed about finding the services she needs and am convinced that I have failed her as a mother.

Correct! We are dealing with mostly B at the moment. I’m worried and frightened and guilty about all of the same old stuff. I don’t know how I am going to manage to find the medical services she needs, and I don’t know how I’ll cope with the increased appointments and still handle schooling. I’m enraged at myself for the decisions that have us living where we are, when our old place would have been more convenient and healthier for her.

I’m afraid. And I’m ashamed. And I’m angry that I’ve internalized a view of motherhood and myself that makes it impossible to blame the people who made the wrong diagnosis, or the teachers who urged me to accept it, or the doctors who ignored her physical problems, or the school system that kept ignoring her physical needs and getting her injured: I am always ultimately to blame, because I should have seen something sooner, acted sooner, fought harder, been a different person.

It’s not constructive to blame anyone, and I don’t want to. I know in my head that everyone, including me, did the best they could with the information they had at the time. But I don’t know how to let go of it. Once again I have to struggle out of the guilt and shame that is, ultimately, a manifestation of selfish ego on my part—I can’t stay in it because it will try to make this about me and not about her.

So, I need to process, and this one may take a little time. I need to process in ways that won’t be self-destructive or sabotaging. I have hope that when I have worked through this, I’ll be able to see the positives…after all, if they are right, getting the correct treatment could gradually improve her quality of life, and that’s fantastic. But I’ve got to step up, do my best to live in the present, and trust in my program to help me do what needs to be done.


2 responses to “Guess What?

  1. We all do the best we can given the information and tools at hand. Parenting under any circumstances is challenging. When our child has special needs, and we advocate on their behalf, it devastates us when we fail to meet their needs. For all the advances made in medicine, behavioral science and educational psychology, we are still often in the dark when it comes to diagnosis and treatment. I wish you the best with your daughter. My husband and I, too, have struggled over the years in helping our now adolescent son.

  2. Guilt impairs one. You are doing everything right. I went through this recently myself. I have been asked for two years if my son has a certain diagnosis, and he did not, until last week. We just change our focus, our tactics, and keep moving. You can do it.

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