Never Let Your Guard Down

A wise parent of an autistic child once told me - many, many years ago - "Never let your guard down".  He was speaking of those times when you think you have things under control;  you're on top of it; you've got all the bases covered, etc., etc.  You are actually daring to believe that life is going to work out exactly as planned.  THAT'S when life is going to sneak up behind you with a baseball bat and give you one hell of a headache.

Now, I'm not being entirely pessimistic here, although it sounds like I am.  I initially scoffed at this parent when he expressed his philosophy of life.  However, the intervening years have proven him accurate, at least in my experience.  There have been countless times when I dared to assure myself that I had things under control, only to be proven wrong.

My latest encounter to illustrate the folly of ignoring this maxim was just last week, when my son -- who is 23 and had been receiving Medicaid Waiver services for 5 years was denied continued eligibility.  We had been going along, confident that things were on the right path, and had applied for funding for a job training program to secure more steady employment opportunities.  Lo and behold, the organization that provides Medicaid benefits couldn't find his eligibility approval letter from years ago, so we had to re-apply for eligibility all over again.  And with state budgets tightening, they are not as free with approvals.  So they rejected his application.

There is really no way I can explain how I felt when I opened up the letter and saw that not only was our request for funding for the jobs program denied, but there was a chance that he would lose service coordination, medical benefits, as well as his current job situation.  We had been "cut loose".

Yep, I had let my guard down.  And WHACK -- out of the blue.

But my husband and I regrouped.  We started contacting people: the higher-ups in his agency, a special needs lawyer, people we hoped could give us advice on how to proceed.  Teachers and aides and doctors from his past that could provide testimony that yes, he does indeed have deficits.  We collected all his evaluations and tests and doctors' letters and any scrap of paper that dealt with his disability.  We had our game faces on, ready for the next step, determined to convince whoever we needed to that our son needed these supports.

As it turned out, a last minute phone call and letter from Zac's service coordinator explaining the discrepancies in some of Zac's test scores seemed to turn the tide.  (Being a tad cynical, I also think that my phone conversation with the eligibility committee chairperson wherein I mentioned the involvement of a lawyer also played a small part).  At any rate, I will not be completely at rest until I have that all-important eligibility confirmation letter in my sweaty hand.

So what am I trying to say here?  Do we always have to walk around looking over our shoulder, expecting the worst?  God, no.  That would be an awful way to live one's life.  I guess we can only do the best we can -- for our kids, and for ourselves.  And when you get that unexpected kick in the butt,  dust yourself off and get on with it.  Tomorrow's another day.