Gary
This letter was originally posted on the AAKSIS Support Mailing List August 10, 2010.
Your update brought back a lot of painful memories of things we dealt with our 47,XXY son throughout his teens and early 20's. He was not diagnosed until he was 23 and I could fill pages on all of the issues we dealt with relative to the legal system, jobs, school, relationships, lying, etc. We were incredibly fortunate to finally learn his diagnosis when we did and I can definitely share some things that seemed to work for us and may be helpful for you:
1. You may have a chronological 19 year old but my guess is there are parts of his brain still operating at a 13-14 year-old level. The problem with this is it is not easy to see, diagnose or treat. If you can find a reputable place that can do comprehensive neuropsych testing, you may want to have that done. It won't point to any magic solutions but it will provide the credibility that there are biological and neurological problems underlying the behavior challenges. This will help the professionals you engage to understand the issues and not jump immediately to some type of psychiatric diagnosis or medication program. That's not to say he doesn't have those challenges or doesn't need that intervention.....everyone is different but you have to feel confident the treatment team understands the 47,XXY component first.
2. If he's not on regular Testosterone therapy yet and maintaining sufficient levels, that's really something you need to seriously consider asap. We had very little luck with the gel but regular injections absolutely worked and I cannot tell you what a difference that made over time. You will need a very strong internist or endocrinologist that will take the time to learn about 47,XXY and read the research (that you may need to provide). Proper T levels are critical from our experience and you will face a huge uphill fight if you can't get that accomplished. Maintaining "normal " ranges may very well not be sufficient....the right dosage and frequency really has to be determined on how he feels and reacts. It's as much art as it is science and it takes his involvement and feedback.
3. The legal system does not understand 47,XXY issues and will not take the time to learn. You will need a good attorney that can fight for him and help convince the court proper treatment is critical to keep this kid safe and out of the courts and jail. But you have to establish a plan and it has to be credible. The first step will definitely require taking back control of his independence. Most parents would not let a 13-14 year old run the streets with minimal supervision (or unlimited internet, violent TV, no curfews, use of a car, etc). He may look like he's ready but the brain hasn't fully engaged yet. Don't get sucked in to his reassurance. Teens will lie about anything and their emotions govern way too many of their decisions. You probably have another 5-6 years of close supervision and effective treatment before looking at the next level of independence. The good news is he will very likely get there....the bad news is you have to keep him safe, out of jail and protect yourselves while he develops the skills. And you need help and you need an attorney to get the court to work with you.
A really good adolescent psychologist will be very helpful in all this (more so than a psychiatrist). Again, you will need one that will be willing to do the research and learn about the realities of 47,XXY neurobiology and behavior. If they can't/won't do that, you have to keep looking. I'm thinking in your area there has to be some experienced people available. Check with the local support group, call the KS&A office, check with Stefan and others from various listserves. Again, the neuropsych eval will be very useful to help the psychologist understand what they're dealing with and what he may benefit from.
It sounds like you may be struggling with the issue that his behavior is "on purpose" and he is choosing to do these things that are causing so much trouble for him. It is more than that and is not really deliberate at all. His brain is wired differently and he likely is having significant difficulty learning from his actions and not able to apply learning across a broad range of different situations. I'll send you a couple of articles that discuss this but it is very difficult to not feel these kids are simply choosing all of these bad things that happen to them. They can appear so intelligent and capable that you have to assume they just don't care how they're hurting themselves or others with their crazy decisions. But if you look at the research and understand how all of us rely on certain things automatically working in our bodies and brains, they don't have the same advantages and need more help to develop these systems.
You're in for a long(er) ride but hang in there.....he's worth it and it will work out for all of you.
Gary
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