helpful way to explain refusal and defiance

[momcap]

momcap -- i just reread your post -- so you didn't 'do' anything? do you think it was treatment of the lyme, etc that made the difference? ds is doing well fairly well medically but is still struggling with a virus that has been troublesome that he can't seem to fully kick. (we've treated for multiple infections)

 

Yes, my DS is in the regular classroom, at the same school where he struggled so much last year. We are not using the special school at all. It helps tremendously that he has a teacher this year who really cares about him and understands special needs. I had to fight to get him full time one-on-one support from an E.A., and he does take a break from the classroom once in a while - not even every day.

 

I wouldn't say we didn't do anything, I would say we did EVERYTHING, but nothing helped. We did every kind of therapy, saw every kind of doctor (medical and psych), went to major teaching hospitals in 3 different big cities, enrolled him in a children's mental health clinic at a teaching hospital, even tried psych meds. Nothing helped until his body started healing due to the treatment for his particular infections (strep, lyme, bartonella, babesia). He still has a long way to go, but what a difference already. His germaphobia is gone, his OCD almost non-existant. His verbal tics are 100% gone. His defiance is decreasing. He is able to engage in a therapy session and actually get something from it now.

 

I guess we were really lucky in Kindergarten when he did the kicking, screaming, shoe-throwing, that his teacher grabbed hold of him and told me to leave. I had that person on the other end. He hid under a desk his whole first day (full day kinder), and I cried at home, but things got better little by litte, until getting much worse in grade 2. BTW - he refused to speak at school from September to April in Kinder. I don't know any strong willed kid who is strong enough to refrain from speaking for 8 months. That goes so far beyond an effort of the will. Anxiety is a HUGE disability and not just something that a child can decide to make go away.

 

Have you tried talking to the school directly about having a person there who is willing to take him on? They might be afraid to try for legal reasons? Maybe they would be willing with your permission? IDK.

 

I really like LLMs suggestions, which my son could make use of now. But back then he went into a fight-or-flight panic and there was no ability to reason at all.

[MomWithOCDSon]

Oh Smarty! Ugh! This is bringing up SO many memories, your and MomCap's stories. In our case, DS was older. But in the beginning of 7th grade, we couldn't go a day without getting a phone call from the school telling us that we needed to pick him up because he was too anxious to stay in class. For the first six weeks of that school year, he spent most of his day in the dean's office, in his future caseworker's room or with his gifted teacher because these were all people he trusted and who would just let him "be" for a while when he was overwrought. But eventually the Director of Special Education Services actually called me and told me that she thought we needed to keep him home (HUGE error on her part, and one for which she paid heavily with the district, since that's pretty much against the law). Anyway, I hear you. Keeping him home is "easier" in some respects, but in the end it doesn't give him access to either the educational or social experiences he needs, and it only contributes to his school "phobia."

 

I feel myself waffling on all this, frankly, because for all the great ERP suggestions and "tough love" advocated by the folks at USF, and very well proferred here by DCMom and LLM, you're stuck. I get it. If DS physically will not comply, what do you do? Especially if you don't have a "you" on the school end of things to help you get that job done! I can tell you that, during the depths of my DS's illness and school phobia, we could've taken away every privilege, every "perk," every little "joy" in his life in an attempt to incentivize him to comply, or we could have promised him the moon, and it would've done absolutely no good. He was just too overwrought, too regressed. Does a one-year-old truly understand that actions have consequences? Well, I would contend that neither does a 7-to-12 year old in the depths of OCD/anxiety. It is all "flight or fight," raw, instinctive, painful response.

 

So . . . all that leads me where? Well, for one, I would agree that you need a really good . . . and probably tough . . . psych/ERP therapist in your corner. When our DS was at his worst, we did pull him out of school for a time. And while we fought the underlying infection, we homeschooled with all the materials and assignments that the school would gather, prioritize and hand off to us. And when he wasn't working on school assignments, we had him in semi-intensive ERP three times per week with the therapist and daily ERP homework.

 

Meanwhile, we got his IEP completed and we got a great person within the school building itself ready to help us get him back in school. It may be harder to do with a 504 Plan because that arrangement doesn't automatically grant your child a caseworker on site; but since you're still in grade school, perhaps there are adequate resources at the school to give you this option, at least for a short period of time? I communicated with the caseworker several times each week while DS was at home and in his intensive therapy, and eventually we even managed to get him to come to the house once each week for DS's district-provided "home-schooling." So DS had an opportunity to build a relationship with this particular teacher and learn to trust him.

 

Then, after about 6 weeks of homeschooling and therapy, we all collectively decided he was ready to go back. We started with one class per day . . . his easiest class that he enjoyed the most, and it just happened to be in the middle of the day. After him handling himself fairly well for a couple of weeks there, we tacked on the next class in the afternoon and so on and so on, until he was in school for the second half of the day. After several weeks of half-day school in which he managed himself in class and built up his confidence that he could do this, we started going for full days. He would still, occasionally, duck out of a stressful class and go to his caseworker for a while. He got better at knowing his own limits and needs, and the caseworker, with our feedback and constructive criticism, learned to support DS without caving in to the OCD. All told, I think it took about 3 months, but DS got back in school full time.

 

So, all that comes around to, no matter WHAT . . . intensive ERP, setting limits and expectations, etc. . . . I DO think you need someone to help you on the "inside." How you go about arranging that, especially without an IEP, I'm not sure. But I think that is the best way to help your DS achieve his self-management in the school without you there. And, frankly, we know our kids behave differently around us than they do away from us, so I truly believe you're going to need to "turn him over" at some point in order for him to really learn to function in the school environment. But you need that ally!

[smartyjones]

I wouldn't say we didn't do anything, I would say we did EVERYTHING, but nothing helped.

Have you tried talking to the school directly about having a person there who is willing to take him on? They might be afraid to try for legal reasons? Maybe they would be willing with your permission? IDK.

 

 

oh momcap -- hope you didn't take offense -- i worded it wrong -- of course, i meant didn't do anything that could tie to the turn around.

you're info is so helpful. very similar!

[smartyjones]

thank you so very much for thoughts and advice -- i so appreciate the time and effort from all my wise friends.

 

last week, we had set up appt with principal, VP and counselor for tomorrow. i think we all agree i need to get out of the school but how that happens is still unknown. i think they are helpful, we'll see what happens.

 

he went quite easily today -- especially for being a monday and him being out sick on friday.

[momcap]

I wouldn't say we didn't do anything, I would say we did EVERYTHING, but nothing helped.

Have you tried talking to the school directly about having a person there who is willing to take him on? They might be afraid to try for legal reasons? Maybe they would be willing with your permission? IDK.

 

 

oh momcap -- hope you didn't take offense -- i worded it wrong -- of course, i meant didn't do anything that could tie to the turn around.

you're info is so helpful. very similar!

 

No worries, not offended at all. I knew what you meant! I just wanted to make that important distinction.