Sometimes I can get so caught up in Peter’s accomplishments and his enigmatic “rockstar” charm that I lose touch every so briefly with reality. I begin to believe that he’s typical, maybe a little quirky, but that he certainly can’t have Autism. I mean, seriously, what are the odds? Maybe he presented that way for a while but he was just delayed. I just didn’t work with him hard enough or in the right way. This is a slippery slope. It’s guilt invoking, disorienting, and generally damaging for the psyche.
Because, when reality strikes, the blow is vengeful and swift and knocks the breathe right out of you.
It can happen anywhere at any time. It could be the younger child that walks beside his mother at the grocery store and listens when she asks him to pick out a box of cereal. It could be in a class with other Mommy’s and kiddos with Autism, when you realize that you are saying and doing the exact same things with your children, whether they are 2 or 4 or 10. When you see your child in theirs, and realize they can’t all possibly be “wrong”.
Or one day, some 8 months after diagnosis, you find yourself contemplating that your “errantly diagnosed” child won’t qualify for further services because of the enormous gains he’s made. You think “maybe he’s cured” and that all of the intense hard work has bridged the gap. Then, in an instant, reality strikes and you find yourself gobsmacked at the incredible deficits reported in the results of his recent standardized evaluations. They seem to scream “your work has just begun” from the letter sized paper.
It’s cyclical; this self-induced neurosis. Sometimes we parents of children with special needs, we spend our lives in somewhat of a bubble, surrounded by other children just like ours and other parents with the same naivete and confusion. It’s not until we step outside, into the real world, that the enormity of our difficulties (and our gifts) can be truly realized.
…as I sat on the floor, face pressed against the crib, peering into big, brown, OPEN eyes…”Moonshadow” on repeat in the background…Everybody’s boy reached out, and for the very first time, took my hand in his. A connection so simple and pure that I can see how it could be missed 100 times a day.
He gripped my finger until he was asleep…and I remained…for another hour, wrist twisted, fingers numb, phone ringing off the hook downstairs…
There was nowhere more important to be, than right there, relishing being Mommy.
I’ve been working on a blog about social services for over a month. While it’s probably one of the MOST important things for me to talk about, it’s also the most difficult. It’s extremely intricate, confounded and honestly, a little embarrassing. I was raised to work hard, to do for yourself and to help others whenever possible. Yet, here I am, unemployed, relying of social services, and hardly able to keep my own family afloat – let alone the rest of mankind.
It’s a hard pill to swallow for the girl who’s spent the majority of her life trying to make the world a better place for others.
I’m not comfortable in this skin, but I’m learning how to be, because it’s totally not about my comfort or my pride anymore. It’s about using a totally inadequate and antiquated system to save my son’s life.
I’m going to get technical for a minute. Us tree-huggeing, bleeding heart types don’t really excel here – but bear with me – I believe this is important.
My husband and I both had decent paying careers in March of 2008, when he took a promotion to move to North Carolina. I left my job as a PR Director and planned to take my time finding something similar after we were settled. Enter the Autism diagnosis in May. Strictly talking from an economic standpoint, we figured we’d be “okay”. After all, we had excellent PPO insurance coverage through a national insurance company. We quickly found out that, actually, they don’t “do” Autism. That sounded so strange. That’s like saying we don’t “do” cancer, or pregnancy, or wellness exams.
I soon found that, incidentally, it’s not just our healthcare provider committing this egregious act. It’s all of them. In fact, AutismVotes.org reports that in 42 of 50 states private insurance companies are not obligated to pay for therapy services whatsoever. I might add that in the 8 states which do have legislation mandating Autism coverage, it is often far too vague an ubequitous, and therefore many important services are not covered or not covered adequately.
There is only one provider that will cover Autism treatment – Medicaid – but I’ll get back to that later.
Here is where is get’s convoluted.
Each state has pockets of federal funding to provide services for children with special needs. The “early intervention program” called Part C funds early intervention therapies (if deemed qualified) until a child’s third birthday, then the child ages out and begins (if deemed qualified) receiving services from Part B (the school system). Most people don’t know these agencies exist. I had the extreme luck of working for an early childhood non-profit and also having a dear friend who is an inclusion specialist. Peter was evaluated and began services in early intervention in Florida at 18 months.
Each state’s early intervention plan works differently. In Florida there was no “fee scale” and services were provided, billed to insurance, paid or rejected (this is BEFORE having an Autism diagnosis) and the rest was covered through the federal grant program. Here in North Carolina, there is a sliding fee scale for services, but they are greatly reduced and many (including us with our one income) receive services at 0% pay.
I promise, I’m going to get back to tree hugging soon, but this information is important because NO ONE tells you any of this. Once the child is three, as I mentioned earlier, the school system is charged with providing the standard of care.
Little soapbox moment here: We don’t begin working with the school district until later this month, but I have witnessed enough to know this. Our education system in America is woefully underfunded. Special needs children are expensive. The school system is only charged with providing an appropriate academic program, which means that oftentimes the most important needs of children with Autism are left out. For example, if little Johnny can do calculus in the first grade, but experiences anxiety attacks due to overstimulation of his sensory system at recess, the school system probably wouldn’t be jumping up and down to pay 150 dollars an hour to an Occupational Therapist to work on this. C’est vraie?
Okay, now back to Medicaid. What does the average American really know about Medicaid? It’s free, it’s for poor people, and MY tax dollars are paying for it. Okay, in a nutshell, that’s it. So here is our family, and thousands of others, faced with the options of not receiving enough/quality treatment, spending at a minimum $50,000 a year out of pocket on treatment not covered by insurance, or being forced into self-imposed “poverty” (I use this term loosely out of respect for those who are TRULY impoverished) to receive Medicaid.
You can apply for Medicaid directly, but usually it is easier to receive it if you go through the application process (and do I ever mean PROCESS) for Social Security/Disability first. If you are approved to receive SSI (Supplemental Security Income) you automatically receive Medicaid as part of the package. This empowers you to choose your own providers, and ensure that your child is receiving the appropriate quantity and quality of therapy available. In layman’s terms – it means that if the school system offers your non-verbal four year old 30 minutes of speech therapy a week, you can tell them thanks but no thanks and go elsewhere to receive services.
The balancing act for us has been that we are borderline “rich” in the social services world. Last year we almost broke $40,000 – less than I made on my own before I left my career to work for Peter. We still have the same bills that we had when we made more than twice that much, of course, so you can imagine the struggle. Lots of belt tightening, prioritizing and help from our dear family. We know how lucky we are, so many are rejected time and time again. We are extremely grateful that Peter is recipient of both SSI and Medicaid and will do everything to keep those services for him. In the past 6 months my husband has literally had to deny two raises, because even a cost of living increase can push us over into the DMZ.
Last week we were audited by SSI, I had to provide pay stubs back through June 2008. They have retroactively decreased the amount of assistance we receive (it’s not much anyway, but it helps) and we will be receiving a bill for the overpayment. The blessing is that they did not find us over-income of ineligible for any of the months we received Medicaid. That would’ve been devastating for us, and our therapists.
I also bit the bullet and applied for the WIC program. It provides basic “nutritious” (though as a vegetarian I dispute that) foods on a monthly basis through vouchers. You have never been mortified if you haven’t stood in Harris Teeter while the manager berates you for picking up the wrong cheese. Bless the cashier’s heart she was arguing with him on my behalf but quite honestly I could’ve cared less about the cheese. I just wanted to curl up under a rock and waste away. Still, the program provides staples for our pantry and I can’t turn my nose up at that.
I try to tell myself that we too pay taxes. We are not “those people” who milk the system. I tell myself that situations like ours are what all of this is truly here for. But I’m so incredibly angry that we are in this situation. We aren’t “here” because Peter has Autism. We are here because, quite honestly, I am not marketable to make enough money to pay for Peter’s intensive (and life-saving) therapy regime. In short, I cannot afford to work.
We are here because the insurance that we pay a nearly 400 dollar premium on each month doesn’t consider Autism to be a treatable disorder. We are here because lawmakers are too busy providing tax breaks to oil companies and being coddled by tobacco lobbyists to think about our children.
The conservative estimate these days is that some 1:150 children have some form of Autism Spectrum Disorder. That’s epidemic and criminal. And, while I don’t believe there is a cure (yet), there is something that we can do to ensure that the majority of these children grow up to be functional and contributing members of society. There is something we can do, so that they do not end up hospitalized in mental institutions leading miserable lives and costing the country a proverbial fortune.
Early intervention. It’s absolutely as simple as it was three years ago when I began speaking to Rotaries and Chambers of Commerce sharing the importance of investing in the future now. The Perry Preschool project has nearly 50 years of research behind it, showing the cost saved by investing in a quality early childhood experience for typical children. Every dollar invested yields the taxpayers SEVENTEEN in funding that did not have to spend on bad debt, correctional facilities, welfare, etc. So what does that mean for OUR kids? Shouldn’t the same be true – or even more dynamic – for them?
If 85% of a child’s brain has developed by the time he is four, and research has shown that we can rewire those parts of a child with Autism’s brain to mimic typical function. And we know that it’s cheaper to invest in them now, that we are getting a far bigger bang for our buck…then what is stopping this seemingly obvious progression.
There needs to be a federal law forbidding insurance companies to discriminate against treatment for Autism. This is too big and too important for each state to hem and haw over, one by one, eventually (and hopefully) coming to the light – while the darkness sets in on child after child after child.
President – elect Obama and those on Capitol Hill, I charge you on behalf of every child in America, whether they have Autism or not, to necessitate this legislative action as soon as possible. The time for change IS now, we’ve worked hard to get you there and now we need you to work for us. We cannot afford to continue decimating hard-working, middle class, families by forcing them into poverty to provide their children the constitutional right to life, liberty and the pursuit of happiness.