Wednesday, September 1, 2010

The System Teaches You to Be a Bitch

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. 

10 comments:

  1. I'd like to tell you it improves with time... but it doesn't.
    It simply gets tiring after a while. Then the system can't figure out why you aren't sympathetic and kind to them.... never clues into them, they recreated the kind of parents we are by refusing us services, by being dominant and refusing to offer a kindness, when they tell us they know better than we do what our children need....
    Hang in there....

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  2. Way to stand up! Reading your article brought back a flood of emotion and anger. My son who is now thankfully, and successfully, through High School, has some learning disabilities and medical issues. While I live in a different state, NY is slammed with a lot of the same problems espcially when it comes to funding for students with needs. I could go on and on with examples of frustrations over the years but rather I will focus on things I learned to do along the way. 1. Be thankful that you put up this fight now, it will help down the line. 2. Document everything, I know it is tedious and seems like not enough time but it will be to your advantage. 3. Don't ever give up the fight for a right, as soon as you let one little thing slip... it is the proverbial slipery slope. Resolve everything in a timely manner (i.e. don't let the schools or bureaucracies drag it out) 4. Get stuff in writing. 5. Don't be afraid to get a lawyer when it is warrented. 6. Teach your child to appreciate and cooperate with the help they receive. Lastly, there are positives along the road, watching your child get to that next level, watching them learn who they are and seeing them pull through thick and thin is priceless!

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  3. Lexi, statistics show that the frequency of immigration is largely a function of the job market, and not contingent upon any ulterior motive of reaping birthright citizenship benefits or as you so eloquently phrased it: "anchor babies". If you're concerned about people entering this country illegally, support immigration reform that makes it easier to become a legal citizen of this country.

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  4. I am not asserting that immigration is based on ulterior motives. But the fact remains that government distributions are given to illegal immigrants and their children, some of whom are considered anchor babies.

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  5. Lexi, how many illegals are actually coming here just to give birth, versus how many were here for several months – or years – before the baby arrived, working in minimum-wage jobs?
    The only short term benefits to someone who has entered this country illegally of giving birth to a child in the U.S. are that in some cases, legal children can help the parents avoid deportation, the children can enroll in Medicaid, and there are some programs that will aid pregnant or nursing mothers regardless of status. Not only does the child have to be over 21 before he or she can pursue citizenship for the parents, but the parents also must return to their home country for at least 10 years before their papers can be processed. Your logic is questionable, at best.

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  6. I really understand your frustration at the red tape associated with getting your son the services that he deserves, I live in California as well and I am at major odds with our regional center. While I get that having to go through this pisses you off (what mom wouldn't be??), I think it is a stretch to bring illegal immigration and "anchor babies" into it. I feel that any child with special needs, regardless of their parent's legal status, is entitled to the same services that we fight to get our children.
    Unfortunately many parents that have come here illegally are too scared to speak up, leaving their own children without services and a chance to live a successful life based on their level of functioning. It is a tough situation all around and I am so sorry that you have to jump through hoops to get your baby what he needs.

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  7. I have had similar experiences with my two kids advocating for their services. The term the hospital has on their charts is "high needs parents" which I am ok with now. We are cogs in the machine but the most vocal or "squeaky" either gets silenced by redirecting or caving and caving is to your benefit of course. Sometimes I even feign more outrage than I feel now because I have become immune to the denials and red tape. Hold steady, ask for providers to write letters if needed for services and know that you are your children's SuperAdvocate! Hang in there and glad you got the services as the outcome. If it gets really bad, invite the press to do a story. Public shaming can work to your advantage sometimes.

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  8. Actually the issue of illegal immigrants is highly relevant to this discussion. If anyone is here illegally and receiving government support they are taking something away from legal citizens. If you want to question logic, question your own. That is unless you have walked a mile in my shoes and become an authority on what my children need.

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  9. Wow!! What nice info on this post! All information really useful. I love your stuff very much.
    Thanks for sharing this helpful post.

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  10. unfortunately I relate to this too well. I have arrived at the same place, I don't like how it feels either, but the people who work in the system need to take ownership of our kids and their needs now.

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