I had it out with our regional center coordinator. I finally lost my cool. But they were going to deny my son speech therapy and ‘require’ us to ‘access’ our insurance before they would continue to fund his services. I have been very compliant, patient and understanding thus far. But given the nature of the political and budget climates here in California, I could no longer say nothing.
I thought it over for a few days, and when I called her back, I had only one question. “Is the state and the early start program discriminatory?” She was silent for moment, then replied, “No, of course not.” How nice of her to hold the gate open for me. I charged ahead, barraging her with questions and barbs laden with attitude, anger and frustration about how the state has mismanaged my money. “Our money”, she corrected. About how my husband and I have paid into the tax system for collectively half a century and never asked for nor felt entitled to a penny. About how there are anchor babies and illegal immigrants living off the system unchecked while our legally entitled son is in danger of going without. I ranted to the point of tears until she said quietly, “I understand and I don’t hear anger in your voice, I hear pain.” That shut me up. She was right. I knew in my heart that I was feeling grief at the inability of my body to keep my triplets inside long enough to avoid the problems with which we now deal.
When I came to from that dizzying reflection however, I resolved that she would not distract me. While I am truly upset about the issues I just mentioned, my first priority is getting my son what he needs. I stopped crying and I told her just that, pointing out that we would under no circumstances be accessing our insurance. Then I asked her if I needed to go to the media or get an attorney to make this happen. Her response? “I encourage you to contact Sacramento. They need to hear stories like this.” Stories?? We are not a story. I informed her that I had not said ‘Sacramento’, and that Sacramento’s job is to get re-elected. My job is to get my son therapy. I told her I needed her and she WAS going to help me get this service. I was firm.
In the end I got what I wanted, but it left me feeling taxed and even more frustrated. I don’t like the way this feels. I didn’t access insurance, what I found myself accessing was the outwardly bitchiest side of me, borne from the inner most protective part of myself. Will it always be like this? How to reconcile my emotional response to my son’s disabilities with the logical and practicality required to actually help him? Is this what the system teaches us? To be a bitch, squeaky wheel, grease and all that? I don’t expect handouts in any manner. However, if my son needs more than we can give him, why should we need to fight for what is available to him while it is handed out elsewhere at the state’s whim? I am not interested in political games, office machinations and ‘directives from above’. If I wanted to hear, “Sorry, that’s our policy”, I would go to IKEA. There are hills I don’t want to die on. But this one? I think I am going faster uphill than I could have ever imagined.