Another Trip Around the Mountain

In my last post, I spoke candidly of the hard season we as a family have found ourselves in. I wish this post was to tell you we are out of it or, at the very least, see the light at the end of the tunnel. We are not and we do not. While Jeremiah’s behaviors are not as adverse as they were a few months ago, they are a long way from where we would like them to be…where they were just one year ago…where we pray they will be again soon.

In church a few weeks back, I heard something that I cannot stop thinking about. Father Travis also wrote of it in his mid-week update. And well, I know by now that if I feel as though God has laid something on my heart, I need to share it. So here goes.

Often, we get discouraged in our life with God because it feels as though we are coming up against the same sins, struggles, wounds, and discouragements over and over again. In some sense, this is reality. But the best way of ascending a mountain is not a straight line, but rather a winding spiral that wraps around the summit until you reach the top. That means that with each pass, you’ll often be seeing many of the same sights, albeit, from an increasingly different perspective as you ascend. It’s not that you aren’t making progress, but rather progress is often expressed through coming to the same struggles with a fresh perspective.

It has been so completely and utterly disheartening to be back where we have been again with Jerry. We had about two and a half years of respite from behaviors that invoke a lifestyle of fight or flight in us. We naively believed that, with the end of puberty, we had seen the last of those behaviors. Yet here we are again. Partially and initially, his behaviors were due to a change in medications being inescapable. Changes were made via a Baker Act back in late June. Over the next few months, adjustments were made - dosages tweaked. So why do we still have behaviors in December?

We’ve been around this mountain before - seen many of the same sights - but this time from a completely different perspective.

Remember when you were 18 and had just graduated high school? Along with that rite of passage and major accomplishment came a sense of one chapter of your life coming to an end while another was about to begin. It was a chapter that may have held many unknowns, but still evoked a sense of excitement and wonder as you looked forward to navigating it with independence from your parents. Maybe there were few unknowns because you had a college plan and had already secured campus housing and roommates. Even still, the idea of finally leaving behind your parents’ house and rules was exciting and anticipated.

Or maybe remember when you finally found that special someone you knew you were destined to spend the rest of your life with. It had taken longer than you expected and you stood in a bridesmaid’s dress or groomsmen’s monkey suit next to a number of your childhood friends so many times, you’d begun to wonder if it would ever be your turn.

Jerry is 22. He graduated high school in May of this past year. His brother Jonathan married and moved out four years ago…when he was 23. His sister Michaela moved out and into her boyfriend’s apartment the day she turned 23 - literally. That left Jerry at home with the sibling he is closest in age to, Benjamin. Benjamin just turned 24 in September. He has a serious girlfriend who in all likelihood will be his fiancee and then wife before we know it. 4, 3, 2…and then there was 1.

Jeremiah graduated in May of this past year. He will be 23 in February - about two months from now. He is a grown man in age and has many of the typical wants and desires in life and sees his siblings (and typical friends around him) doing things he can’t do. He doesn’t fully understand why. As a result, as my BCBA and special needs mom friend Stephanie puts it, “His emotional state turns into a toddler protest because mom and dad ‘won’t let me’. The typical is hitting the atypical (like Mike Tyson) and it’s a big jerk for everyone. It’s like a toddler tantrum in a grown man.” I could not have said it any better.

So as you can see, at 22, things are looking very different from our perspective on this umpteenth time around the mountain. Similar behaviors as when he was 14 (or 4 or 6 or 10 or 12 or 16 or 18), but from an entirely different perspective.

What’s the solution? Well if you figure that out, let us know, will you please? We haven’t the foggiest. While we have been here before behaviorally, it’s never been for these reasons and so, how we handled and dealt with them before, won’t work now. For now, we continue to work closely with his behavior analyst.

In addition, we are trying to give him something to look forward to when his last sibling moves out. He will move into Ben’s old bedroom. His Bob the Builder brother Jonathan is going to make him custom dirt bike tire lighted shelves to display his coveted monster trucks on. The room he currently inhabits - the loft - will be turned into a living area for him complete with his own couch, TV, and other bachelor pad essentials. The bathroom he currently shares with Ben will be redecorated to Jerry’s tastes - probably monster trucks or Legos. We are toying with even throwing him a housewarming party to celebrate his new living quarters.

Backup plan? We have spoken to his APD caseworker about group home placement to give him the independence he desires. We have suggested this to Jerry, to which he protests, “I don’t want to live anywhere else! I want to stay home!” Really? Because your behavior declares otherwise. And of course, someday when we as his parents are no longer here or able to care for him, group home placement will be his only option. But until then, despite his behavior towards us, it still makes me insanely sad to think of him living somewhere else (most days anyway).

Will either of these plans solve the issues we are currently having with him? Who knows? Will we have to tough it out until one of these plans comes to fruition to experience any relief? Prayerfully not. This many trips around the same damn mountain have taught me that PTSD is a very real monster. I have also discovered that the older I get, the harder this gets - physically, emotionally, and mentally.

And neither of these plans alleviates his heartbreak over not having a girlfriend - a special someone to share his life with - what he sees his siblings have at every single family get together - and his typical friends have on social media.

It’s just sad all the way around - for him and for us. Praying that the next time we round this same summit it will be from a better vantage point and give us a whole new perspective that we just cannot see right now. It’s not that you aren’t making progress, but rather progress is often expressed through coming to the same struggles with a fresh perspective.