I have been stewing for the past half hour imagining an email that I could but should not write explaining the reasons I am going to decline an invitation to a parents’ meeting. Since I have already wasted time on this endeavor, I may as well fritter a bit more of the last day of my leave and actually write about it.
I try to keep in mind the basic dignity and worthiness of all people, but I am not immune from feeling an instant dislike to a specific person. Fortunately I have encountered less and less such individuals as I have gotten older. Maybe my tolerance for others has grown over the years, or the hermit inside me has slowly taken over, exposing me to less people overall.
For the past year, my daughter has been attending gatherings and classes for adolescents and young adults with autism. At the Christmas party, we met the new director of the this center, whom I will call Liz. Her polished artifice looked absurd as she stood next to Jim, who is a transplant from the north of England with permanent casual dress and an utterly sincere demeanor.
I had hoped that I would rarely encounter Liz, that she with the perfect hair and teeth would be home resting after a full eight hours of self-promotion by the time we’d make our periodic evening visits to the center. As my dad is wont to say, there is no such luck.
I cannot fault her devotion to the center, for she has managed to insinuate herself into almost every function, regardless of hour. In January she started a monthly parents’ meeting, and I have found an excuse to avoid attendance each and every time until this month. I would rather staple my fingers together than spend a hour with that woman. I certainly have no intention of confiding anything about the experience of parenting a teen with autism in her presence.
I have been careful to avoid infecting my daughter with this negativity. I knew implicitly that I needed to bite my tongue the moment I met Liz for the first time, so as not to say, “I’m Michelle, and I will detect your ruse.”
But I cannot and should not waste my time anatomizing her falseness. She does not spend time alone with the clients at the center, for she is the sort who was born with an entourage or support staff. The worst she can do is what I’ve witnessed myself, awkward chit-chat with the clients waiting for their gathering or class to begin.
During these exchanges, her face is stone above her evening news smile, and she sounds as if she could be more patronizing if the person with whom she was speaking was worth the effort. Her excitement as visitors come through the door seems roughly proportional to the combined dollar value of the parent’s apparel and vehicle.
Last night I mentioned to my husband that whenever I see the “Intel Inside” logo on commercials that I imagine designing a t-shirt with the same swooping design but with the words “Bitch Inside” on it. If I had bothered to make such a shirt, I’d be wearing it as I type these words.
I have a group email from Jim asking for an RSVP on this week’s parent meeting. It sits in my inbox unanswered, for I do not wish to give a fabricated reason for my forthcoming absence, especially to someone who is genuine and faultless in this situation. However, I don’t see how I can be honest without being curt. At times I wish I could borrow the dark moxy of that cashier at my college bursar’s office who had a sign hanging on the wall beside her that said, “No is a complete sentence.”
Actually, there is a little more than gut-level dislike of the director at work in my decision to avoid the parent meetings. A couple weeks after the Christmas gathering, I received a bill in the mail for attending the party! I thought it odd that I needed to sign in to the affair as if it were a regular session, which it was not. I paid the bill because this was a battle that this parent would not chose to fight. Instead I refuse to be duped again. I will pay for therapeutic experiences for my daughter, not for access to other parents mediated by someone who is as false as the veneers on her teeth.
A couple weeks ago, when I was waiting for a class to end, I glanced at the shelves of client binders and noticed that my daughter’s was one of just a few marked “P/P” on the spine, which told me that we are in the minority of families that are private pay. The rest of the families must qualify for something called a medicaid waiver, which in my area at least is based on the degree of disability of the client rather than a family’s income.
I have not pursued getting a waiver. If my daughter does not need an IEP for school, why in the world would I claim that her needs could overwhelm my ability to provide? This issue may need to be revisited once she becomes an adult, for it is still unknown how she’ll fare with increasing responsibilities and independence. I had my time in the trenches of state assistance with being broke during my daughter’s early years, and I do not intend to go back to that kind of dependence.
I’m going to blame insurance regulations for birthing the waiver beast. Why in the world aren’t insurance companies required to cover autism services? I think health insurance plans should be required to cover the sort of services paid for with medicaid waivers, and waivers should be available to the uninsured based on income and/or diagnosis. The cost of under-treated disorders and lost human potential is simply too high to do otherwise.
I know a middle class family whose young adult son with autism languishes mostly at home because he does not quite qualify for a waiver yet the family cannot afford the hundreds of dollars a week for day services that would help him develop his adult potential. This family has private health insurance, too. No one should slip through the cracks like this.
Enough of my venting for now.