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I No Longer Have an Autistic Child

     

As of last weekend, Benjamin is now an adult. I had intended to write a lightly humorous blog post about the absurdity of celebrating a 21st birthday with someone who has literally no concept of adulthood, perhaps contrasting it with my own awkward 21st birthday spent with my father so many years ago. After today, however, I am not feeling especially humorous about Ben’s current situation.

Today Ben had a regular doctor’s appointment with his general practitioner. Nothing special about it, his health lately has been good, it was literally just supposed to be a friendly checkup and perhaps some new prescription refills. Ben, however, was extremely anxious. He had barely slept the night before, having been apparently overwhelmed with OCD-type behaviors that kept him agitated all night.

For a long time Ben loved going to see doctors, he seemed to understand that doctors helped make him feel better when he was so sick for so long with his pancreatic issues and atypical cystic fibrosis. That all changed this past year and a half, beginning with his seemingly-endless illness which led up to his Whipple procedure in Alabama last January. It took a solid six months for him to fully recover from that surgery. I think the straw that broke the camel’s back, though, was having his wisdom teeth out back in November. With other doctor visits and procedures there was a pretty strong association between feeling sick, going to the doctor, having a procedure, and then feeling better. With the wisdom teeth, they had not yet begun to cause him any discomfort. There is no question that they needed to come out, and logistically it was best managed by doing it in an orderly manner before it became a crisis. Unfortunately, that meant that from his perspective he was feeling perfectly fine when for no apparent reason we took him to yet another hospital where they did horrible painful things to his mouth. Ever since then he has become significantly more anxious about the entire idea of seeing any doctors.

As a further complication, in the past week we have begun to transition him to a new medication. With all of his other significant medical issues, it had been years since we had been able to really look at his maintenance meds. Now that he is generally healthy, we are hoping to make some tweaks that take into account the fact that he is now an adult and significantly larger than when his current dosages were set. One medication in particular was making him drowsy during the day, which not only causes problems at school but also then extends into difficulties sleeping at night. So five days ago we started the process of tapering off one medication that could be causing his daytime drowsiness and introducing a different non-drowsy medication as a replacement. The psychiatrist we are working with advised us that he was starting with a low dosage, and that we would need to slowly ramp up the daily dose until we found the correct level that best worked for Ben.

It is very clear at this moment that we have not yet found the correct level.

As Ben sat in the waiting room at the doctor’s office today he became increasingly agitated. He was clearly anxious about seeing a doctor, and on top of that he was having an issue with his iPod. Normally he will be very patient while I try to fix whatever technical issue he is having, but today it seemed like he had completely lost his ability to self-regulate. Still, we’ve seen temper tantrums and such from him in the past and it did not seem that worrisome to begin with.

Then he was called back for his appointment, and as the nurse was getting his weight, without warning Ben just hauled off and hit her. I am not talking about a small child throwing a tantrum and slapping someone in frustration. I am talking about a fully grown, one hundred and sixty pound adult male punching a completely unprepared woman. As someone pointed out to me earlier today, Ben has no filters in his head that would cause him to pull his punch. He has no instinct at all to prevent him from injuring someone. He has the strength and the body mass to cause serious damage in a worst-case situation. It happened so quickly, and nine hours later the sickening sound of that smack is still echoing in my head. Fortunately the nurse was not seriously injured (although I fully expect she was bruised).

We quickly got Ben under control and got him in to the examination room to try to calm him down. Despite our best efforts, he still managed to hit the nurse two more times before we suggested that she just go ahead and leave the room. He also slapped his mother several times, and kicked me once in the gut. It has been years since we have seen this kind of violent outburst from him, and he was half the size then that he is now. It was a frankly terrifying experience.

The nurse was very kind about the whole thing, as was the doctor who came in a little bit later. We of course apologized profusely. Normally we would also make Ben apologize, but by that point he was so worked up that there was no way to even get him to focus. I had to take him completely out of the building and let him walk outside for several minutes while his mother spoke to the doctor.

Here is what really terrifies me about the whole thing: Until we get the medication levels sorted out, there is a very real danger that someone can get hurt. Obviously Ben is physically capable of unintentionally injuring someone. Worse, I can easily imagine a situation spiraling out of control where law enforcement gets involved. There was a recent case here in Florida where a mother called the police for assistance in getting her adult disabled son to take his medication, which she had done several times in the past. In this case the police officer wound up separating the son from the mother, and then fatally shot the son when the young man became aggressive. So yeah, that keeps me up at night.

I am trying to tell myself that today was an aberration, and that before long we will get his medication sorted out. The simple truth, though, is that the issues surrounding caring for an adult autistic are worlds away from the issues we faced when he was a child. In less than a year Ben will no longer be able to attend school, he will have aged completely out of the system. There are adult day programs, but they are cost-prohibitive. One way or another, by next fall our entire routine will have been completely upended and we will be scrambling to find the new normal. I have frankly never been more terrified of the future than I am right at this moment.

So, um… Happy New Year?


10 Comments:
Jan Taylor
Ron, As my sister and brother-in-law are going through this exact scenario, I am fully aware of your concern and frustrations. It took 9 folks to hold their son down in the ER on Christmas Day. The weaning of the meds to change over has increased the agitation, but brought such clarity to his brain that he now can speak in 7 word sentences. Such a dilemma! Bless you for your sharing. Peace. BREATHE.
Charline
I just finished reading 3500: An Autistic Boy's Ten Year Romance with Snow White. As a central Florida resident for 31+ years and innumerable Florida Resident annual pass Disney trips with my daughter during her childhood, I am overwhelmingly impressed by your ability to sit through any of the rides in continuous rotation. What profoundly dedicated parents you and your ex-wife have proven to be for your son. As the aunt of a soon-to-be senior in high school with Asperger's Syndrome, I am familiar with the need for repetition and order in the lives of children challenged with these neurodevelopment disorders and truly worried with you about the ramifications of Ben losing his beloved SWSA ride. I was delighted to read the end of the story and learn that he was able to accept this enormous change in his life and move beyond it. I pray that the issues with which you and Ben are currently dealing will soon become just a minor hurdle you all have to cross before Ben becomes a smiling, laughing adult in love with the "Mouse's House". Peace to you all.
Fen Simmons
I just finished reading your book. Thanks for sharing your story, it helps those of us who are clueless gain an inkling of insight into your struggles. Our prayers are with you.
Tina
I just finished reading your book last night, I read it in 2 days. I laughed and commiserated with you. Your story was very touching. I'm sorry you and Ben are struggling. I hope things get better soon.
Shat
Ben is very much on my mind since reading your wonderful book. Hoping to see an update soon and that you've been able to figure out just what he needs. I want you to know that your book has helped me to understand what parents are children are going through. At church recently there was a young man with a disability who was localizing during Mass. I normally would have ignored the noise but felt sorry for the family. Since reading your book, I realize that there is a precious person beneath that disability. Of course I knew that before, but never in the way I realize it now. Thank you for your book and blog. I pray often for Ben.
Linda
I just finished reading your book. It was very well said. I have a cousin that was labeled "retarded" until she was in her 40s when they then decided she was autistic. My aunt and uncle were told they should no longer treat her as a child and were to take away all her stuffed animals etc. and treat her as an adult. It was very traumatic. It's wonderful now that autism is recognised, accepted and understood somewhat better although there is a long way to go. My cousin who is now 63 is living in a sheltered community and my aunt and uncle are since deceased. She is well cared for however I wonder how different her life would have been if they had known all along what the diagnosis was. My uncles Nick name for her was "Tinkertazie" and he loved her so much. You remind me of him. God bless you and your family and especially Ben.
Charlotte
Thank you for sharing your journey in public. It often helps those who walk a similar journey gain insights. It opens the eyes of many who are blind to the many challenges families of special children/adults face.
Linda
I have just finished reading your book and as an adult special needs support worker I only wish that other parents were as dedicated as you are. God Bless you and Ben
Gloria
I, also, just finished your book. I got very little sleep last night, as I couldn't put it down and read it in one sitting. I have had adult and teen foster children and have an autistic nephew. I know your fears and worries. Medication changes can be extremely difficult. I hope and pray things are getting better for Ben and you. He is lucky to have the parents (and step parent) that he does. I have experienced the violence during the transition to adulthood. It is scary because, as you said, they do not have the awareness of the harm they can do. My prayers are with you and I am looking forward to reading more of your blogs. Thank you for sharing Ben's amazing life with us.
Dani
Trying to remember exactly how I stumbled across Ben's SWSA story today is somewhat baffling. I know that I followed a link on a site dedicated to closed WDW attractions several hours ago, but why I was on that page in the first place eludes me. Mysterious beginnings aside, I found myself utterly entranced by the six part blog. Hours later, having worked backwards in time to the recommended readings on the side bar, I was left wondering where Ben was now. It was an odd experience reading first about Ben as an teenager taking his last ride on SWSA to a tale published in 2005 where he was only on ride 1000 and obviously significantly younger. It wasn't until reading this, your most recent posting, that I grasped what age he would be now in 2015. The number 21 was somewhat startling. I'll be celebrating my own 21st birthday in the late summer / early fall of this year. Like Ben, that milestone will make me an adult by all legal, physical, and social definitions. Yet reading this, I am distinctly reminded of how young I am. The struggles you're going through as a parent -- the fear and worry that I have no personal parallel for and yet can sense so clearly through the page -- remind me that in some senses I am still very much a child. It is a strange sensation to think of the passage of time as something worrisome to be paused rather than something to speed along. When I read those original posts about SWSA I saw only good stuff - the Disney magic, the witty writing. While I recognized the gravity of the situation that led to those moments, I didn't understand it. I don't think I'll be able to for a long while yet. Oh, I'm really dragging this out!! I'm having difficulty phrasing the point I wanted to make. Talking on the internet is almost more nerve racking than a verbal conversation. The point is...while I find myself unable to completely relate to you, I thought I might be able to offer some comfort as another newly minted adult. Please don't take it the wrong way. I don't mean to speak for Ben at all. Our situations are so different. But we've both been in this world for nearly the same amount of time, and while our perceptions of it have been markedly different we've had one thing in common - fantastic parents who love us dearly. It is at this point in my life that I realize just how much my own parents love me. How much time they spent comforting me and worrying after me and advocating for me. It's not a matter of hindsight either, of looking back and seeing things differently like people always told me I might. It's about how it feels right now. It's been *twenty one* years of love. I have twenty one years worth of memories demonstrating my parent's unending love. And everyday that evidence grows. It's impossible to even consider at this point that they would do anything less than walk to the ends of the earth to help me, to support me, to LOVE me. I know I don't know your family personally, and that I haven't even read your full book - just a few blog posts, but I wanted to make the assurance that I've no doubt Ben feels the same way about you. I don't know if it helps to hear that from a stranger, but I hope it offers some comfort to think that while you look to the future with apprehension, Ben looks and sees you and your wife and his mother there to support him. It can't last forever, but that reassurance of a parent's presence is a very special, soothing feeling. Anyway I've now literally spent hours trying to word this right, so if all you take from this over-long comment is that you're story has truly pulled on a perfect stranger's heartstrings, I guess that's enough.

3500


ISBN: 1-482-09330-8

Benjamin's Lullaby

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There has been an influx of new readers to my blog. If you wound up here looking for stories about my son's ten year romance with Snow White's Scary Adventures, here are the major blog posts you will want to read:

SW1K - The Full Story

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SWSA Final Night, Part 2 - The Fairest One of All

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About Shmoolok

The word "shmoolok" is a mashup of the longtime computer handles for my wife and myself ("Shmooby" and "Lokheed", respectively).

I originally created this website to be a place for my family to connect, but it has since grown into something a little different.

As for me -- I am a father, a husband, a son, a software developer, and a writer. On any given day I am not sure how good I am at any of those particular things, but I do try my best.

Thank you for visiting my website.

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