Much has changed in the many years since I wrote that last post about my son's experience at Earlham college. What I'm going to write today will reflect what often happens with people on the spectrum when they attend college.

Like most families, our son -- and we as his parents -- were excited about the college experience, and Earlham seemed like an ideal choice in many ways. It was a beautiful campus, full of truly accepting and kind students. To this day I still have a very soft spot for Earlham College and it's student body.

Our son was there for two full years. He did well the first semester. He had access to many social activities, and seemed to have a handle on the academic side as well. But the second semester showed a dive in grades, even with my attempts to help with scheduling, etc. from far away. He returned for another year, but could not keep up with the expectations, and also seemed to really find it hard to socialize. He was somewhat depressed because he could not manage the social requirements of keeping up with people, texting, interacting on a regular basis, etc.

We also realized that his meds were not working very well. Late into the fourth semester, he began taking regular Ritalin four times a day ... and things improved but not enough and too late.

So, our son came home, and immediately got a job. He then enrolled in a nearby community college. He again did poorly. Then, a miracle happened -- but at the time, it didn't seem like a miracle. Our son forgot (ADHD much?) to refill his epilepsy medication. I had shifted the responsibility for his meds to him, instead of having me do it -- it was time for him to take control of the medical side of life, and he had previously been very good about keeping tabs on and taking his epilepsy and ADHD meds. But, at this point, when he finally told me that he had forgotten to refill his meds ... it had been two months. That medication was completely out of his system. Restarting the med would be catastrophic ... the first time he began taking it, his cognition was horrible, his sleep was horrible, and he was depressed. Many of these things shifted over time, but it took six months to adapt, and I still observed fairly negative effects from that med. 

As a family, our son and my husband and I came to the conclusion that he should just not take this med. That would seem to be a reckless idea ... but he had only had two seizures EVER. Once you have a second seizure, neurologists automatically slap the "epilepsy" label onto you and give you medications, often regardless of how those meds impact your life. To be fair, having medications take care of debilitating epileptic seizures is the most important thing. And yet, people like my son, who have only had two seizures and immediately were helped by the first medication they ever tried are somewhat unusual. Then, by going off of the medication for two months and having NO NEGATIVE SYMPTOMS, our son's experience seemed to lean towards being a very atypical case. It has now been 1-1/12 years off of the medication, with no seizures and no adverse effects. We make sure that he gets lots of sleep and try to keep the stress level low -- we are guessing that a lack of sleep and lots of stress may have triggered his two seizures many years ago.

Once off of this medication, his next semester was amazing. He got the highest score in his class for pre-calculus. The next semester, he took a Calculus class -- a six-week summer course -- and got a high B. All of his other grades were high B average grades, all while working part time. I help with scheduling, but even that chore is being passed toward him. As parents, we are available to discuss how long an assignment will take, and how to chunk the assignment into smaller amounts to make it easier to accomplish. We are here to brainstorm ideas for essays, etc. But our son is doing the work. He has decided to complete his associates in Mathematics -- an associates degree will make his credits all transfer to another university (rather than worrying about that university picking and choosing which credits they will accept). He will most probably finish his associates degree in a year.

We are taking these sorts of choices one step at a time, but I am learning a lot of things as a parent. I've learned that those two years away from home were still a success. There was a lot of social learning accomplished during that time, and there are still friends who contact my son as a result. I've learned that community college is a wonderful thing. I've learned that accomplishing a degree slowly is just fine. I've also learned that my son just needs more time for all sorts of things, and providing that time results in small accomplishments that will ultimately add to big accomplishments.

And I cannot tell you how many times I have spoken to other parents who have been through exactly that same trajectory with their son or daughter.

When stimulants cause depression and/or zombie behavior

It's been about a year since my son has been on huge amounts of stimulants in an attempt to see if he can pay better attention to things in school AND to see if he can complete homework in a timely manner. We could see that the stimulants worked, but there were other associated problems.

It's pretty bad when you have a kid on the spectrum, and the stimulants that help him pay attention also make him less social. I've read about lots of people describing the way the stimulants make them feel like a zombie, and after this last year, I was watching this reaction before my eyes. Off the stimulants, my son was happy, bouncing, fun. On the stimulants, he was good at paying attention, but depressed and no fun. He also had an inability to make decisions, didn't want to do anything (even video games) and just was not my son. It was frustrating to watch, and I imagine it was even more frustrating for him to experience.

During the summer, we would sometimes allow our son to go off of the stimulants. It just killed me, because those days were so much more fun. I had my boy back. I was definitely coming to the conlusion that maybe we were going to have to make a really difficult decision -- either my son stays on stimulants, and we totally give up on his ever socializing because he needs to make it through school, OR we give up on the stimulants, completely pull him off, and just try our best to make school work through sheer hard work. Neither choice was a good one. But I missed having my happy boy, and I was thinking that maybe his having a chance at making friends was better than having it be easier to do schoolwork.

We talked with his therapist about this, and decided that we needed to change up something. When our therapist talked with the doctor about it, they came to the conclusion that we should switch up my son's anti-anxiety pill. We had tried two different anti-anxiety's, and they did seem to help, somewhat. We switched this time to Cymbalta, and the difference was AMAZING. It was like the missing piece. Suddenly, we had a kid who was doing great at school, great on homework, remembering quizzes and tests and upcoming assignments -- AND he was HAPPY. TALKATIVE. FUN. Just like our son used to be.

I guess what I would like other people to know about this experience is that what our doctors tell us is true -- you really have to spend time finding the right combination of medications to get something that will work. Now, we also have little problems leftover, even though the meds are working -- my son still has some tics that are frequent enough to be socially unappealing (scratching his head, some grimacing, etc.) but I am fairly sure that we can work on that medically as well. It's just so nice to see him feeling good about himself, and happy with his school life AND his social life. Now that the meds are working better, the therapist can begin to help him with his social skills.

I couldn't have believed it myself, but for right now, things seem to be going well. I just want others to know that it does get better. It can take a long time, but it does get better.