Homebound?

[jennapow]

Just wanted to see if anyone's PANDAS doctor has prescribed a homebound placement during a flare. We have just started seeing Dr. K in Chicago. We are not even sure if it is PANDAS but something is going on where my son is not able to function. We have an IEP meeting today to change his school placement. I agree that he can no longer go to our neighborhood school, but I fear with how bad he is doing, that any school is going to be miserable for him right now. Wondering if homebound might be an option while we investigate and try to treat.

[dcmom]

My kiddos are highly functional when well, and when flaring ocd prevents them from getting to school (and even doing schoolwork at times). We have an IEP which gives them homebound instruction on the 5th day absent from school, without additional doctors notes. Both of my girls have spent significant portions of their school life on homebound, yet also have spend a lot of time in school and doing really well.

 

How long has your child been experiencing pandas symptoms?

 

I think homebound is a good option, because I wouldn't want to make any decisions until he is treated.

 

Good luck!

[MomWithOCDSon]

Jennapow --

 

We did strictly homebound for almost 3 months when our DS was at his worst; as he started to improve, we worked out a plan with the school (within his IEP) which allowed him to return to school gradually, at a pace that matched his capability and endurance in terms of managing both his health and his behavior. He literally returned one class at a time, and the first class he returned to was his resource period, during which his teachers from his other classes would come and check in with him, he could take quizzes or ask questions about various assignments. Then, every few weeks, as he continued to improve, we would add one additional class period on, and then another, etc., until, after about three months, he was back in school for the entire day.

 

I like DCMom's idea for ongoing management (fifth day out = homebound instruction period). Neither we nor any of our IEP supporters thought of that at the time. But luckily, he managed well once he was back in; we just needed a "mental health day" here and there to give him a break.

 

All the best!

[jennapow]

This regression started in mid-October. Since that time his behavior and mood have gradually deteriorated and it is a struggle to get him to go to school at all. Last week I just kept him home all week (without a doctor's authorization), and this week he is going to school 2 hours per day. While he is there he is staying in the resource room and being given the choice of whether or not to attend events (art, music, PE, etc.) with his class. When he is "well" he still has autism, and attends our local elementary school with the help of an assistant. He is very high in math, science and reading, though he has challenges with socialization and critical thinking. Prior to this flare he was also attending an accelerated math class at the middle school receiving instruction 3 grades above his level.

 

We also recently started working with a psychologist who specializes in autism. When I suggested homebound due to his anxiety/irritability she was not in favor of it. She thought it was just too long for him to be out of school. After observing him at school (in full-out refusal mode) she suggested that a change of placement would be appropriate. I was just wondering if a PANDAS doctor would write the note for home-bound. We are still working on ruling PANDAS/PANS in or out. He is on day 6 of an antibiotic and we meet with Dr. K again next week to review how he did on Augmentin and look at his blood work. I am praying to get some answers from this!

[MomWithOCDSon]

I think the concern for some (therapists, teachers and parents alike) with respect to homebound instruction is the tendency it can have to support "school refusal" when it's time to go back into the classroom. Given the opportunity to stay home in a "safe" place for a period of time, some kids get more obstinate and anxious about returning to an environment that can be, at times, overwhelming and chaotic. I would think that is perhaps more likely the case for kids on the autism spectrum than those who are not. Perhaps that's why the psychologist is encouraging a change of placement, rather than homebound.

 

That being said, I think you know your kid best and should consider the options and then advocate accordingly. If there are alternatives available in your area that rival the current setting in terms of location, educational options for your son, challenging him in those subject in which he excels while also supporting him improving in those areas where he might come up a little sub-grade-level, then maybe that's worth considering. But if the school he currently attends (albeit sparingly at present) has suited him well when healthy, then you might consider advocating for maintaining the status quo if possible, with homebound serving as the alternative when he's unable to attend on a regular basis.

 

I don't know if this is equivalent at all, but my DS is "quirky" and was, particularly at your DS's age, highly socially awkward. In the depths of his PANDAS one of the psychs we saw gave him an Asperger's diagnosis, and the testing he went through for his IEP showed "significant processing differences" between his verbal and spacial scores, though the school psychologist did not feel he had the full body of traits that qualified him for being given an Asperger's or autism "label." Both before and after his PANDAS dx, he was in the school's gifted program and particularly excelled in math and science, though his reading scores were very high, as well. During the worst of his PANDAs, he had trouble doing any schoolwork, math or otherwise; it took constant coaching, constant encouragement, lots of breaks, reduced work volume, etc. But he eventually came out the other side and, as I mentioned previously, was able to return to school full-time.

 

Today he's a college freshman (with sophomore-level credits, thanks to AP classes and test scores), and though he started his college career still significantly socially awkward, he has now "found his tribe" at school and, for the first time in his life, has a large circle of friends that he hangs with, values, shares, enjoys, etc. And after his challenging high school career, the academics thus far have proved to be almost easy for him.

 

Long way of saying . . . I see some of my DS in yours, and if mine is any example, yours can and will get through this and potentially thrive. Hang in there and follow your gut. The doctors and psychs and therapists are all knowledgeable and well-meaning, but you know your kid best!

[jennapow]

The school that they are suggesting we change to is about 25 miles away, so would be about a 45-minute bus ride. It is also a highly structured therapeutic school that only focuses on students with autism. OT and Speech are built into the classroom. They have sent our IEP over and we will probably visit next week. It just seems so extreme compared to what I was expecting for my son. Even at his best, he did require a lot of modifications at our home school and socially he has not made connections with any other kids. He is essentially tuned out to relationships with anyone other than trusted adults. With his behavior the last several months I am certain that the kids don't want to have anything to do with him - they're afraid he'll blow up.

 

We are planning on visiting the new placement and seeing what we think. My fear is that it will be too "behavioral" for his current state of functioning (rewards/consequences for things he can't control right now) and this will only exacerbate his stress. I will also ask the doctor if homebound would be a consideration so we can keep that in mind. I do think that someone coming in to do homebound instruction would also be difficult for him, especially since he wouldn't know them and also is very rigid that you don't do school at home. There are so many factors to consider. Thanks for your input. It's helpful to "talk" through it.

Edited January 29, 2016 by jennapow

[smartyjones]

hi jennapow. yes -- so much to think through.

 

my ds is a lot like ocdmom's son -- he(and she) are beacons of hope for us - have been for years. we have the other side of the coin. the adults at my son's school became horrible -- they did not see the challenges as quirks and social skill deficits - but rather, defects to be disciplined out of him. in the end, we needed to get him the he** out of there. he is at a different placement that is in actuality, too restrictive for his needs, but the best choice for now. given his disastrous school history, he needed something to help get him back on track. it has actually been quite good. the adults are fabulous, the class is small and he likes the kids.

 

one thing that concerns me in your comments about the new placement -- his high academic needs are REAL needs. they need to be addressed and serviced. if not, he very well could have struggles. you have every right to discuss and get real answers about how they plan to program for his individual academic needs.

 

also, you do not have to go with the private psych's recommendation -- it is simply her recommendation. perhaps based on that observation, change in placement is a good option. it may or may not be based on the entire picture. I believe part of our trouble was the school saw the concerns that ocdmom details and would not approve homebound when trouble was surfacing. we could have avoided so much if we had done that then -- they dragged on and let everyone get very frustrated. sometimes, it can be what the child needs - a break and can come back when healthier and function much better. the fears can be real - but there are things you can do to help work with not getting too comfortable in the home setting -- not mean, just that going back is always the plan.

 

as unfortunate as it is, sometimes it is not a choice of best option, but least worst. we've had to go with least worst 3x in his 5 years in school. but - each one has had a silver lining. I think it will be there for you too -- sometimes it just takes a while to uncover it. Good luck!

[jennapow]

Thank you all so much for taking the time to reply and share your experiences. I am so grateful for finding this board! This process has made me feel so alone and it's so nice to hear from people who have experienced something similar.

[Cleopatra]

My daughter had her PANDAS onset in August of 2012. She made it to 1st day of 2nd grade and missed the entire rest of the year on HHB. Was too sick to receive any instruction and skipped to 3rd grade. Missed 2/3 on HHB. Missed 2/3 of 4th grade on HHB. Missed this entire year, so far of 5th grade. Gets 8 hours/week on HHB via 2 different teachers. BEST thing for her. Do it!!