If you do something (or in this case don’t do something) consistently for 21 days they say it becomes a habit.

It’s been 21 days since I blogged.

My excuses are futile.  I just put everything else before the blog.  I’ll just hop right in with an update.

Almost three weeks ago I returned home from my office holiday party and opened the mail to find out that SSA was dropping EB for real this time (not like the every other month letter that says ”we are going to drop you, but then you find out three weeks and 20 klonopin later that they were “just kidding” and it’s going to be sort of okay).  So I have to ready our “financials” back to January of 2009 for a meeting on January 5th at 9 a.m. so that they can not only take away EB’s SSA but also (most importantly) revoke his Medicaid and add to the growing thousands of dollars we have to repay because freaking Steven Hawking couldn’t figure out their stupid-assed algorithm for how they determine eligibility.

Why do we have/need Medicaid anyway?  That’s like for poor people who are milking the system, right?  Wrong.  Gus and I have insurance – like the real kind – but that insurance is not legally bound to cover any therapy related to Autism in our state.  That means EB’s private Speech, Occupational and Behavioral therapy are not covered by private insurance.  They are only covered by Medicaid, which incidentally you can only get in one of three ways; 1) be poor (once a social worker suggested we have more children so that we could make more money and still qualify – for real), 2) be disabled and poor(ish) – this is what we’ve been for the past four years but you know how it is working part time in nonprofit while your husband is raking in the unemployment – we are SO ballin’ now we don’t qualify, 3) be disabled and get a coveted CAP slot.  CAP is a program for individuals with developmental disabilities that assists them in living independently.  It provides, among other things, personal care services (respite, in home support) and comes with a side of Medicaid.  We’ve been on the cusp of receiving a slot for 3.5 years.  Now the whole program in NC is being “restructured” which I honestly am  not sure I understand enough to write intelligently about – but it looks like us getting our hands on that holy grail anytime in the near future (if ever) is unlikely.

Gosh, the options to get help for your child with a developmental disability are absolutely abundant.  I’m so grateful that we don’t live somewhere crappy like Canada or France with socialized medicine.

That was sarcasm.

The school system is required to provide a fair and appropriate learning environment for children with disabilities.  EB has received special education, inclusion facilitation, speech and OT at school through an IEP (individual education plan).  Two days after I got the “no, really, we’re effin serious this time.” letter from SSA.  We met for an IEP meeting to mainstream Peter from the self-contained (autism classroom) to the general education kindergarten classroom.  Academically he’s rediculously above board so it makes sense that the stuff he needs to work on most must be worked on with typical peers – socialization, emotional regulation, transitions, etc.

The new placement begins in January and isn’t much of a departure of his current schedule – but it’s still a scary transition – leaving the safety of the specialized class and Autism-friendly zone.

He’ll still have heaps of support and we are very proud that he’s made such great progress.  We know this is the right move for him.

Lots of changes though, right?

I realized a few things this past month.  First, we are incredibly fortunate.  Our son is doing amazingly well.  He has had the best of the best for the past four years.  The foundation he has had is more than we could ever ask for.  If we lose it now, or realistically even if we lose part of it (because we will find a way to pay privately for therapy), he’s still had more than thousands of other children in his situation.

Maybe losing SSA and Medicaid isn’t the end of the world.  Maybe the stress of the “you’re in/no wait you’re out” isn’t worth the benefit.  The hours of phone calls and appointments and research and stress – maybe just being free from the cycle of emotional turmoil might benefit all of us in ways previously unimagined.

It will be okay.  It is always okay.

I’m tired of living in a zone of uncertainty.  I’m tired of having absolutely no control over our future, and most of the time of our present.

I’m counting on 2012 to be the year where the pendulum stops swinging so hard and fast and the dust just settles long enough for us to breathe – to get a good look at where (and who) we are – and live our lives without the fight.

Whatever happens, it will be okay.  Whatever is there when the dust settles, we will find a way to reconcile it.

Cause sometimes the only way to win the war is to stop fighting so hard.