Like a Bad Penny

Well, it’s been awhile.  Five plus years. A lot has happened in those years, some good, some bad (I leave it up to to decide which is which.)

• The election of a new president
• Brexit
• Cubs snap an 108 year losing streak to win the World Series
• A papal visit
• The advent of man buns (OK, I know I said I would leave it to you to decide good or bad but these are just inarguably awful, an ahborrition really. They just should never have been.)
• A government shutdown (OK, again I know I said I would leave it up to you but seriously, how could anyone, regardless of political affiliation, think this was a good thing? Eyes on you Wilbur Ross.)

So where have I been?  Unfortunately, no, I wasn’t out on the mean streets wielding a pair of scissors as a man bun clipping vigilante but boy do I wish I had.

Perceptive readers may have copped on that life with the RA was manically action packed. Much like Vegas, our house was open for high jinx and hilarity 24/7 sans drunken bachelorette parties or Celine Dionne.  And unlike Vegas, what happened in our house didn’t stay in our house. Undoubtedly to our neighbors’ collective dismay. Particularly naked window sill time.

The truth of the matter is the RA was getting older, minimally larger, and more active.  As a result I became increasingly worn down physically, mentally, and emotionally. By that last post in December of 2013, I was beyond even running on fumes.  Not only was I exhausted but so so so damn sad. I had less time and energy to blog and frankly no desire. I couldn’t see the funny in it any more. I always hated autism.  Some “autism parents” consider “autism a blessing” and “autism is a part of my child like the color of his eyes.” I was never and will never be one of those parents. I don’t  and won’t embrace autism as a part of my child. Autism is the enemy and doesn’t deserve a hug. It is a shroud that envelopes the RA and prevents him from being who he truly is.  My son isn’t autism’s sole casualty. The entire family is stricken. We are all its captives and victims. Especially my daughter. In this whole autism mess I firmly believe it’s the siblings who get the rawest deal.  Their lives are full of chaos and they never get the attention they desire or deserve. When it comes to autism, siblings are collateral damage. Autism is a greedy monster. It steals dreams, possibilities, and time.

It is not uncommon as severely autistic kids age they become harder for families to manage.  They are physically bigger and sometimes behaviors can become more troublesome and even safety issues for the child.  Although the posts for this blog are amusing (and unbelievably true), it was quite evident that the RA was a bit of a handful.  OK, he was two handfuls - and that was on his “easy” days. As the RA aged his handfuls increased in size and amounts. And because for him variety is not so much the spice of life as the arsenic of life for his dim witted caregivers, the RA added new behaviors and activities.  You thought based on past blog posts that my husband and I didn’t know which end was up? As time progressed we didn’t know where the end was. We basically were living each day in survival mode. It was all about trying to get through each day. The quality of life for the entire family, including the RA, was terrible.  In short, we had no, life. But autism was thriving. The beast had completely taken over all our lives.

It was the RA’s school who encouraged us to move him into the residential program.  Despite the state of our life, my husband and I were not eager to do this. Although a dictator, he is our little boy and we believed nobody would take as good care of him and certainly not love him as much as we did.

But then a couple of things happened that made us cowboy up and really look at the situation.  One of the most painful things we had to accept and admit was that someone else could take better care of our son.  One of the most painful yet selfless things we have ever done was put the RA into the residential program.

Although placing the RA into the residential program was one of the most excruciatingly traumatic decisions we ever made, ultimately it truly was the best one for him.  In that environment not only does he thrive but he is happy. In the house where the RA lives, he is referred to as the “mayor.” He is personable and funny, a sheer delight.

But fear not, gentle reader.  The RA has lost nothing of his mischievous naughtiness and my husband and I are still his unwitting servants/court jesters.