Thursday, February 26, 2009

Guilt ; Medicaid Waivers, Republicanism, and Tomatoes

So what is a Medicaid Waiver? Lord as if I know! My take on it is it is a combination of funds from federal and state resources, that can be used towards someone with a disability and does not need to meet all the Medicaid eligibility requirements - most notably income. How can the money be used? A variety of things, such as uncovered medical expenses (Can we get some help with Zach's $4000 evaluation at Yale?), therapies (maybe we can get some additional ABA not covered under Early Intervention?), environment modifications (I am getting really nervous about the lighting fixtures in his room - could we get some coverage for installing ceiling lighting? I am also very nervous about our 2 story foyer and his interest in climbing the outside of the railing) , adaptive equipment and technology (weighted vests for sensory issues, specialized swings, a service dog!), respite (we really need that break) and likely many other things that I am not aware of.

A part of me feels a tinge odd about this, most likely the extreme Republican influence of my mother shining through. I have to remind myself that for 23 years, Steve and I have been paying into this system and will continue to do so. This may be one of the reasons why my continuing work seems like the right thing to do for now. I have always been a fairly independent person. I like feeling like I can provide for myself, and I think Steve is fairly similar. I had a hard time thinking about quitting work to stay home, because I felt like I would be relying on Steve too much. This is odd, since I was more than please to let Steve quit work in an effort to finish up his PhD while I went to work and paid the health insurance. I think watching my two sisters divorce from rather unscrupulous husbands after dedicating their lives to their marriages and children might have tainted me. Perhaps I am scared to rely on what could be the unreliable. (although I have a lot more faith in my husband than my goofy ex-brother-n-laws) Perhaps there is a certain amount of pride I have, too, in being self sufficient.

Most of my life I got to hear from my siblings how spoiled I was, how I was given so much more than they were. Even if this was true, was it my fault? No. I am not sure what things they mean when they say I was given so much - was it the book box my dad won at work? The 10-speed bike I got for Christmas? Maybe it was all the toys I received for Christmas throughout the years - I don't know what they received - I wasn't around. My college education was my responsibility - although my parents helped out. I repaid them when I received my first job at GM and put the down payment on a new car for them - the first new car they ever owned.
I wish I gave them more - I realize now how much they gave up for me. My parents were blue color types - dad was a fireman and mom was a clerk. Both were smart and hardworking. Both provided more than adequately for me, without a doubt. We had a lovely home in suburban Camillus with air conditioning and cable TV. Quite the luxuries back in the '70's.

I witnessed Mom and Dad and their wanting to provide even as my siblings became adults and had children of their own. They paid for weddings for my sisters, and rehearsal dinners for my brother. They purchased appliances for my siblings as anniversary presents (Mom got a good discount at Sears and Dad was the coupon king), they gave silver place settings for presents, they babysat and chauffeured children to and fro. They were there for my siblings and their children - which is gift enough. I want to be that kind of grandparent myself.

Well, Steve and I paid for our own wedding in its entirety, we paid for our graduate degrees ourselves, our first house and second house and all the appliances and some furniture too. We took hand me downs and used them even though they might not be the most fashionable. I have always been able to work and provide for myself - and I am grateful that I have had the opportunity to. But this is not the case any more.

In order to get what Zach needs - I need help. I need help with knowledge, I need help financially. I cannot let me pride get in the way of helping my son, like I have seen with other people. I have witnessed several parents who do not want to label their children - (autistic, or special needs in general) even though it meant getting their child provided the services they need. If someone told me that my child had to be called a tomato to get what he needed, I would immediately rename Zach to Heinz ketchup.

I have to ask this question of such people: if someone told you that in order to receive a million dollars, would you call your kid a tomato? I have a feeling most would say yes. Well, then why wouldn't you do the same in order to do something that could be the biggest positive influence in your child's life?

Zach is my little tomato.

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