Raising a child with autism – Oct 2014 update

Hello all!
This post is a little off topic. There is some pharmacology, but the main thing is that for a long time, I have been wanting to express some of the feelings that are part of raising a child with a disability, specifically autism. One way is to share some experiences with you.
I hope to have enough material to write a book someday, but in the meantime, you will need some background to understand the story. We have three kids. My daughter, Vanessa, 23(!) and two boys, Reynaldo, 16, and Andy, 13. Reynaldo has autism, Andy is “neurotypical” (this is code for “normal” in the autism community). Both of them have beautiful dark curly hair, and believe it or not, they got that hair from me… (:-)
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“Papá, I will be a good boy, I promise, PLEASE take me home!”
In 2005, I was hired as an assistant professor of biology at an university in Southern Pennsylvania. Even though it was exciting to have found a job so quickly (I was hired a couple of months before finishing my PhD), we needed to move. I don’t like moving. Five years before, we moved from Puerto Rico to Ithaca, NY; I did not like moving then either.
Moving to PA was not a trivial proposition, we could not just pack our things and go. One of our main priorities was to find a place with good schools for the boys, especially Reynaldo. So, we decided that I would go ahead and find an apartment, and start hunting for a house while I worked. So, for that semester, I would drive to Ithaca every Friday afternoon and back to PA every Sunday. This was a difficult period in our lives, and that is an understatement. My wife essentially took care of the family while I worked (trust me, I got off easy). Our situation was not unique. We were not the first family that had to make those kind of choices. We will not be the last either, but this time, it was happening to us.
For starters, I do not like being away from my family. I usually tuck my guys into bed and after that, every single night before going to bed myself, I go to my kids’ bedrooms and make sure that they are well and resting peacefully. If do not do that, I can’t sleep well; that’s just who I am. So right there, I had to adapt, and of course, I missed my wife and kids a lot!
During the time period immediately before my move, Reynaldo, who was 7 at the time, began to have more intense problems at school and at home. He became more aggresive and defiant. These behaviors became worse when I moved to PA. On ocassion, he went into these “rage attacks”; this was most disturbing, my sweet boy was almost unrecognizable at those times. There was even a time when a good friend of ours had to go by our apartment, since Reynaldo was out of control. My wife had to deal with most of these situations; I just was not there, I could not be there, there was no other paycheck! On top of that, we were trying to figure out what was going on with him, and most importantly, how could we help him out. We were also worried that he would hurt his little brother in one of his episodes, even though we knew how much he loved Andy.
One day in October, I was seeing a house with a realtor (this was the house we ended up buying). I was looking around the yard (to this day, I frequently remember these series of events as I mow the lawn on that side of the house) when I received a phone call from my wife. Reynaldo had lost control at school and apparently punched 5 kids in a row in a short period of time. She told me that she made the decision to take my boy to the closest psychiatric emergency room available. This was at the University of Rochester School of Medicine, about two hours north of Ithaca. So she left our youngest son, Andy, with a neighbor and drove to Rochester with Reynaldo (at the time, Vanessa was not living with us). So anyway, I informed the realtor of the situation, and got in my car. Keep in mind that It was a 4 hour drive, with plenty of time to think, and to worry… I was home by 8 pm, my wife got back at about 11 pm, completely drained of energy, both mentally and physically; she then told me what happened at school.
Immediately, I knew that the incident must has occurred during a lapse of supervision. You see, one of Reynaldo’s peculiarities is that he is rather uncoordinated. This is not uncommon in autistic individuals. In my mind, there is just no way that he would have been able to hit 5 kids in a row if a teacher had been present. My favorite comparison is those ninja movies in which the martial arts expert just jumps and in a split second drops 5 guys. I love my boy, but he is not that agile, period.
Anyway, my son, my sweet boy, was to spend an as yet undetermined period of time in a psychiatric hospital. That period fell right during halloween week. Reynaldo was going to be Woody from Toy Story and Andy, who was 4 at the time, would be Buzz Lightyear. For Reynaldo, it was not to be; there would be no “trick or treating” for him in the halloween of 2005. My wife spent most of the day at Rochester with Reynaldo and meeting with doctors, etc., and came back home in the evening to to take Andy trick or treating, as it would not have been fair to deprive Andy of a holiday that to this day, is one of his favorites. Where was I that night? Well, it was a Monday, so I was in PA. Enough said. Reynaldo spent that halloween night in the hospital, with strangers; caring and professional people for sure, but strangers nonetheless.
During this ordeal, as the days went by, we repeatedly called Reynaldo’s psychiatrist at Ithaca. We left messages. No answer; we never got an answer. We could not understand why she would not return our calls. Mental conditions are rather difficult to assess and treat. Think about this, a physician taking care of a child with a medical condition in the ER can usually figure out what is going on in a relatively straightforward way, relying on the medical history provided by the caregivers, obtaining information based on blood work or X-rays, etc. There is no blood work or X-ray test that can detect psychiatric conditions. A call from his psychiatrist would have helped the hospital doctors a lot. That call never came.
In the meantime, we were allowed to visit Reynaldo and he was allowed to call us. Not surprisingly, his usual words were to plead with us to go get him and take him home. He would go “Papá, I promise that I will be a good boy, PLEASE take me home! How could you respond to that? We tried to explain to him that he was a good boy, but that was not there by his choice or ours, that he needed being there to get better, but he could not understand why. In my mind, there are only two things that can be worse to a father whose child is at a mental hospital, if your child dissapears without a trace or if your child dies. Yes, it is that horrible.
Another psychiatrist explained to us that the most likely reason for what was going on was a condition called “serotonin syndrome” or “serotonin storm”. Serotonin is one of the substances that we all have in our nervous systems, closely related to conditions like depression. Serotonin syndrome is sometimes caused when drugs that interact with the serotonin system are taken together. In a way, it is similar to an overdose situation and in extreme cases, the condition can be lethal; yes, death is possible.
When I researched the medications that we had our boy on, lo and behold, we were giving him two of these medications, as prescribed by his former psychiatrist. When I learned about this, you know what? I blamed MYSELF for what happened to my son. Still do. You see, remember that I told you that I had just graduated with a PhD? Well, my degree is in pharmacology and neurobiology. I should have known better, I should have done my homework! I know I am not a physician, I know in my head that I was not at fault, but in my heart, I will always blame myself for those days that my boy spent in a mental hospital, just because I implicitly trusted a so-called physician who clearly did not have an idea of what she was doing nor did care or accept responsibility when that horrible thing happened to my boy. When things got tough, she just cut us loose. Some “Doctor”!
Never again. We have a great psychiatrist now, who clearly knows what he is doing; we know this not just because of his reputation or by what others say about him. Based on our experience, I now do my homework and work with him for my boy’s sake.
In the midst of all this anguish, a wonderful, beautiful, thing happened. At the time, remember, Andy was four years old. In one of our visits, out of the blue, he started going like “Reynaldo, you need to get better, we miss you so much and we want you home”. We never even discussed his brother’s situation with him, we never told him to talk to his brother, we just told him that Reynaldo was sick. This was one of the most wonderful family moments that we have had, ever. I can still remember that my wife and I looked at each other’s eyes, feeling inmensely proud of our baby, and in a sense, relieved that Reynaldo had such an awesome little man in his corner.

My kids with their old man…
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Want to see more of the things I write? Go here for some other posts. By the way, I wrote a book!

TFB is available as an ebook (Kindle, Nook, as well as in iTunes). The price of the Kindle version was just reduced by Amazon… (:-)
The hardcover is available at Amazon and at the Oxford University Press’ website.  There’s even a 20% discount code from OUP.
This is a popular science book, which I hope to be enjoyed by laypeople and biologists alike.
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