Barely going to school

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Hi everyone,

I need some advice and support. My 14-year-old son has high-functioning autism and ADHD. He had seizures until two years ago, so this fall, his neurologist decided that it was time to wean him off of Trileptal. That's when all hell broke loose -- his anxiety and OCD became so severe that he literally could not go to school. We would drag him there, where he would sit with the nurse like a sad sack of potatoes until allowed to go home. (We do not live in the U.S., so getting quick mental health care and help from the school have been a huge challenge, too).

Long story short, he did go to intensive outpatient therapy for the OCD, which helped him a lot, but he still feels very anxious and can become quite aggressive/angry. He also did not go back to his old school and is now at an alternative school that is used to working with kids with different diagnoses, where he goes an hour/day with a lot of pushing and prodding from me to get him there. This week is the last week before summer vacation.

I am trying a low dose of Zoloft with him, although he had a really bad reaction to a higher dose when the OCD first started. The psychiatrist seems reluctant to try other SSRI's and is more interested in trying Abilify now, which honestly kind of scares me. We did not put him back on Trileptal because that came with its own difficult side effects, and getting him on the first time around was horrible (he was enraged for days).

I guess my question for everyone is not so much about meds, etc., but were you like this as an adolescent? If you refused to go to more than an hour of school, did it eventually resolve itself? Should I just be happy that he is now going an hour/day or should I push him, in spite of his anxiety/anger about it? When he is at home, he plays video games, jumps on the trampoline and sometimes will hang out with other kids, although few can tolerate him for long. He switches between playing with and really annoying his little sister, who has probably suffered the most with his behavior. He does interact with us quite a bit, and we still have a good relationship, although I have to admit that I am exhausted by the nearly 4 months of school refusal.

I am at a loss with getting him back to school full-time in the fall. We have talked about everything from residential psychiatric care to get his meds straight to boarding school to continuing on the current path of trial and error with school, meds and therapy. He does not want to leave our house, but it is also very comfortable for him here. Are we enabling him or supporting him at a time when he really needs it? I can't answer that question, so I'd like to hear from someone who's BTDT. Have we come to accept extremely low expectations or is it OK to have low expectations from a 14-year-old in his situation? The big one is -- will he grow up and decide that he needs to go to school and function?

Any insight you might have would be appreciated as my husband and I feel quite beaten down by the whole situation.

How is your son's ability for self-teaching? Having taking off frequently from school when I was his age, it was the social overload and perceived unfairness of certain mainstream expectations that ultimately ended up with me dropping out of high school. I was good at self-teaching and tried to enroll in my school district's correspondence classes which would require me to attend a teacher at night for about 10-15 minutes a week for turning in and grading my work; a kind of directed home schooling (unfortunately, the state had laws which made my attendance in such a program unnecessarily difficult, and I simply waited a year to complete a GED test so I could move on to college).

Maybe your district has alternatives like this which would help your son and let him learn on his own.

Has you consider PANDAS as a cause for your son's OCD?

It is serious, scary stuff but so easily treated with antibiotics that I think of it as almost a free roll.

If you get a chance, you might want to read the book Saving Sammy where a mother talks about her struggles in helping her son with OCD. And of course just because he had this as a cause doesn't mean your son does, but it still might be worth reading.

PANDAS is thought to be related to rheumatic fever and Sydenham's, where in PANDAS antibodies to strep attack and inflame the brain's basal ganglia causing OCD symptoms. Ouch!! Yes, it is scary stuff but so easily treated. Now, some doctors are skeptical about the whole thing, and I don't really know why since it is so closely related to rheumatic fever. A reasonable first step might be for your son to get a blood test to check for titer levels of strep antibodies.

In Saving Sammy, I'm not sure the boy had all that rapid onset and his symptoms did kind of come and go, along with serious school refusal and inability to go to school. But because of the ease of treatment aspect, still might be worth looking into.

Hello and welcome to the forum. I hope you are be able to find some of the answers and support that you need here.

Do you know why your son doesn't want to go to school and what makes him anxious about going and what it is he doesn't like about it? There is sometimes some deep down root that "sets off" the symptoms. It could possibly help if you could find what exactly it is. But it is really ok if you don't know and you are not being a bad parent if you don't know. Very likely, he doesn't necessarily consciously know the reason himself.

Both. He is going to school at least a little and so it is a start. One hour is a whole lot better than not going to school at all. Be happy about this start, small as it may be, and show him that you are happy with this start. Look at it as something to build upon.


My mom has said in the past, meet the child where they're at and go from there.

On possibility is you might try letting him have some input into (not necessarily control over) the decision making. He might help for him to know that at least his thoughts and concerns are being seriously taken into account.

Another thing you might try is offering him two choices. Either stay at the same school/at home and go to school x hours a day/week, or go to a boarding school/impatient care facility. Or the some combination of choices. Offer them and be firm that those are the only two choices, it is his decision, but he must choose one.

I don't know if these could work in your situation. They are just some thoughts. I hope that soon things will fall into place for you and your son.

School sucked. Especially high school.

I missed about 1/2 of it due to intense anxiety and how overwhelmed it all made me. I highly doubt I could have gone more (if it was forced), as I would have just skipped classes to sit under a tree and regenerate. Throw in bullying too, and..., no.

It was rough.

We moved to the country shortly after I left early (midway through year 11), and...I started to heal from how it made me.

As for expectations, you shouldn't expect anything from anyone; people do what they can. If they can't do something, then they can't do it (you know when someone can't do something when they fail at it repetitively).

Thank you for your thoughtful replies.

David, he is actually going to a small alternative school whose teachers are pretty amazing at working with all kinds of kids. I wrote to the head last night with my concerns, and she basically said what everyone here said -- he's been through a lot, give it time, be patient. I really trust her and her staff. He is not an autodidact, in fact, I could easily teach him, but he isn't interested in working with me or my husband and never has been. Home for him is 100% relaxation and any type of homeschooling is not an option. I wish it were.

Regarding PANDAs, I am sure that he does not have that, although it is an excellent idea. He has always had OCD behavior that crosses into perseveration (hard to tell where one ends and the other begins). The outpatient treatment center he went to is actually world renowned for its PANDAs research, and they did not think that was the case. In fact, he has rarely been ill in his life. I think we can trace the intensity of his problems to weaning off the Trileptal, and he admits himself that he hasn't felt "stable" since approximately the middle of the wean (although we didn't know it until about 2 days after he was completely off, or we probably would have kept him on it for now). It's been a horrible experience, though, and much like the descriptions of PANDAs. He has always had autistic traits, though -- literally since he was born, so all in all, it's nothing new.

I'm relieve to read that someone else skipped most of high school and, I assume, is a functioning adult?! I am going to work on being patient now and hoping that the Zoloft kicks in without too many side effects. He has definitely been less reactive the past few days and much easier to reason with. We can actually have a conversation about his thoughts and feelings without him getting louder and angrier. I am pretty well trained in keeping calm -- not only my personality but my job -- but really, it is hard to take when someone overreacts to nearly everything.

Thanks again.

I myself have struggled with OCD about both germs and chemical contamination, as well as responsibility OCD. I've read that the standard treatment is exposure-response prevention, which I suppose is alright up to a point. But it seems like it's too often taken in an almost evangelical Christian direction where a person is supposed to just try harder. And believe me, when I'm struggling with OCD, I have loads of trying harder. I myself have had more success with an approach I've largely developed on my own, a softer approach where if I can kind of wind to a place in which it's okay to do the health precaution and also okay not to do it, that's a pretty good place to be. I mean, I'm not a 'bad' person for doing the precaution. I'm just more relaxed and less judgmental about the whole thing.

What I think parents and family members can do is not take the hard approach that bad outcome -> prior mistake. Sometimes a person just gets sick or gets unlucky and that's that. We can't plan every step to the uber nth degree. I think baseball players understand this, that there's good percentage play, and past that, sometimes things work out and sometimes they don't.