Harsh Reality

It has taken me quite a few days to sit down to write this, but with Father's Day fast approaching, it weighed heavier on me with each passing day.  It needed to be voiced in some manner.  Last week, Jason had an appointment with his neurologist.  Just a regular follow up, nothing major.  However, he hadn't seen the neurologist since being diagnosed with bipolar disorder.  Once the doctor was informed of the new development, he asked about his dosage of medications, how his behavior's been since the changes, etc.  He also talked to Jason for a bit one on one (I was still present).  He asked me about our long term plans for Jason, given the autism and bipolar.  What our goals were for him, academically and in life itself.  I told him the truth, our hopes are for him to graduate high school, MAYBE get through college and if we're lucky, he'll live in some kind of assisted living arrangement or facility.  That would mean he basically lives alone, with someone checking in on him a few times a week to make sure he has what he needs and doesn't hurt himself.  I was told that, barring any further progress, which is of course possible, he is at that point right now.  If something were to happen to us today, he is good enough to live alone with some help. 

Now, we try our best to just worry about the day to day because frankly, that's more than enough most of the time.  Worrying about the future is frustrating on MANY levels.  For starters, I know he'll probably never be well enough that I will feel comfortable with the idea of him living alone in any manner.  I accept that.  We came to the realization a long time ago that Jason would probably live with us till the day we die.  I'm good with that, that's the responsibility I signed up for when we decided to have children.  In the back of my mind, the constant worry is what happens after I'm gone.  There is always a little piece of you that hopes he will progress to such a point that a "normal" life will be possible.  Don't get me wrong, I still have hope for that.  That blue light will always shine, no matter what.  I try my best to shine it on him and get him to feel some hope as well.  Sometimes, though, the red light of rage brings me back to reality, when his rage leads him to do things and say things that he shouldn't be saying or doing.  On those days, it's hard to see the blue light at all.  Even though, we knew he was at that point, to hear the doctor say it out loud was very tough to hear. 

Some would say that we have done a great job getting him to this point, considering the condition he was in when he was first diagnosed.  Others might say we still haven't done enough, that he still isn't like other kids his age.  I try to tell myself the first sentence, but very often feel like the second.  It can cause a lot of friction between us, the responsibility, the worry, the feelings of failure and frustration, of simply not being a good enough parent to our son.  Marriage is never an easy thing, autism does not make it easier.  The divorce rate for parents with autistic children is around 90%.  We're still together over 10 years after diagnosis, not common at all.  The weight can be overbearing sometimes.  When a set of parents gets the diagnosis and asks us about what to expect, I always say to them, expect your marriage to suffer a lot.  Everyone talks about the impact on the child and rightfully so, but the impact on the parents, both in regards to the child and each other, is important as well.  This last week and a half, we have struggled with those thoughts, that future for Jason.  That meant a lot of stuff directed at each other, because who else are you going to direct it to?  Only someone who has walked in our shoes for a while can truly know how hard it is NOT to take shots at each other sometimes.  We're the easy target for each other.  Is it fair?  Hell, no. 

So, at the end of the day, you try your best to make things right with each other and with the child.  All you have are each other.  We try to understand each other's way of coping with things, and move on, cause the kid's not waiting around for us to get our act together.  We're still gonna work towards the day he can have a "normal" life, try to keep our fears and frustrations limited to ourselves.  It's a harsh reality, but he didn't ask for it, so we gotta try and make it work for him.