school planning

[momslove]

I need to think about this with my "forum friends". Sorry if this is lengthy...

 

Our DD has been battling PANDAS/PANS since 4th grade. She is now in 11th grade (although credit deficient). Our school has been very supportive and accommodating. I have no complaints. Last year, DD basically stopped attending school in the middle of October. She was set up with some online classes which she worked on when she could, earning 2 credits. We had been utilizing a basic "health care plan" until the end of last year when we went to a special education evaluation. She now has an IEP under the Other Health Impairment category. This year she has started attending school again. In fact, she got to school on time every day for the past 10 days straight!!!!! Nine of those days she stayed in the building the whole day!!!! Her schedule is such that she is "in" 3 regular classes and then is assigned to various locations for periods to work on her online classes or to have study time. In these past 10 days, she has attended her 3 regular classes each day and is participating!!! During the other times, she has found her way to the office or one particular classroom where she has rested/slept and decompressed (helping the teacher or doing art work). These are not her assigned locations, but have been allowed because this was her previous plan for when she couldn't be in a class.

 

Now there is discussion about holding her more accountable and expecting more work towards credits from her. I'm still in the mode of "Holly Cow! You are doing awesome!". I don't think she can do more work right now. I think being in school the whole day is hugely beneficial to her even if it is not clearly academic. The day she went home early, I asked her if she wasn't feeling good and she said, "I never feel good." I know she is pushing herself.

 

The school nurse rallied to say this is no different from other medical conditions where the school would allow a student to "rest" during the day. All team members are in agreement that we must not push too hard or DD may give up. Then when the school nurse was talking to me again about therapy for the OCD, getting more expert information for the school regarding the OCD, and making sure DD had the "tools" to deal with her OCD, I realized I was bothered by this.

 

We have done therapy over the years. The best experience was intensive ERP/CBT at the Mayo Clinic. We learned a lot. Locally, that kind of therapy is not available--at least not that I have found so far. I believe in the benefits of quality therapy. What hit me today though was this--I feel like school staff think that the crashes won't happen if DD has all the correct "tools"and that if crashes happen it is because she doesn't have the "tools". I have heard "She's going to have to learn how to deal with this." I think she deals with it better than many other people would... She (and DH and I) would all probably continue to benefit from quality OCD therapy if it was readily available, but it is not. The nurse asked if there was an OCD expert we could request assistance from for the school. I think the school has done a great job. I was thinking then about Dr. T's fever explanation. Maybe there is a way to help create understanding by talking about how a person can't cognitively stop a fever from happening any more than they can use CBT tools to stop a flare from happening.

 

Am I way off base? Do you know of any literature that addresses returning to school--successfully?

[MomWithOCDSon]

Momslove --

 

Mostly, I'm posting to tell you that your story is SO VERY familiar, and you are not alone in any of what you're experiencing . . . it's almost a "repeat" of what our family went through with our DS though, for the most part, he went through it all about a year earlier than your DD (through 10th grade), and by his junior year, he was able to pretty much navigate school "normally."

 

I don't know of any literature that really deals with this issue, and certainly not peer-reviewed literature. There are some good books about OCD in the academic setting and what sort of 504 and/or IEP accommodations are best for giving a student with OCD behaviors their best shot at success, but like you, we saw that everything we were dealing with was not limited to OCD . . . it was also the fight-or-flight episodes, the general anxieties, the exhaustion from working so hard to "hold it together," the melt-downs from a combination of exhaustion and fear that "this will never be over . . . I can't do it!" And similar heartbreaking experiences.

 

It sounds like your school, similar to ours, has been great in giving your DD the opportunity to work her way back into being in school for a full day; one of our IEP team members (a gifted education teacher) stated it blankly. The number one goal was to get DS into school, and keep him in school, for the full day. That was all that mattered, and everything else would have to play secondary to that. Thankfully, not only did the rest of the team acknowledge her wisdom, but they wrote that as a goal in the IEP documentation itself. I think that was key. Does your IEP have that as a goal, too?

 

So, that being said, the school, as I'm sure you know, is required to demonstrate "progress" with goals in the IEP; without documenting progress and re-assessing current conditions and setting new goals, an audit would likely determine that the school was utilizing the IEP and associated federal funds in an inappropriate way. I don't know all the legal issues, but this is the essence of what I've been told by our caseworkers over the years. So the key is that the caseworker and other individuals contributing to the IEP be made aware of the most subtle of accomplishments and gains so that they can meet the requirements for their documentation while keeping those things in place that support your DD without pushing her too hard, too fast. You might try making sure they know, for instance, that your DD is still exhausted at the end of the day and that she still is far away from being in that "normal state" they see in other 11th graders . . . having the time and energy to undertake extra-cirriculars, for example, or participating in other "fun" activities, rather than just struggling to keep up with school work and getting adequate rest. Particularly if they haven't asked these sorts of questions about her life outside the school building itself . . . I think sometimes we make assumptions that they must know these things . . . they're professionals for heaven's sake. We've had the benefit of a school psychologist on our team, for example, who stresses these issues . . . that DS deserves and needs a social life, downtime, sufficient sleep, etc., in addition to being adequately challenged in his academics. That ALL of his emotional, mental and physical energy should not be expected to be taxed in academics or the school day alone.

 

My DS is now a senior, and he still has his IEP, and he still has times when he feels overwhelmed, overtaxes, exhausted, etc. He has an IEP resource period that he uses to rest, relax or catch up with work, depending upon how he's feeling. And, even so, we occasionally allow him a "mental health day" here at home because, like your DD, he sometimes has to fight very hard to "feel good," and when he's exhausted and overwhelmed, he tends to catastrophize and say that he "never feels good," either. It's the exhaustion and hopelessness talking, in the face of a laundry list of academic pressures he's worried about in that moment, but I know it nonetheless feels real to him. So, a mental health day it is!

 

As for continued CBT/ERP . . . in our experience, it has been very beneficial. But I can totally relate to your concern that there aren't individuals to whom you can readily turn in your immediate environs. We've been through three therapists in the last five years ourselves; each of them had some skills and benefitted DS and our family in certain ways and for a period of time, but DS's maturation and development eventually rendered each of them obsolete to some extent, and we grew weary of paying hefty sums for therapy that was, at best, marginal. That being said, however, through more than 7 years of therapy off and on, plus some great books by professionals like Dr. Aureen Wagner, we've developed some ERP skills and techniques of our own that we use and coach at home every day, and DS takes to school with him, as well. I'm not clear if your school wants a professional to help THEM/their staff with tools and techniques for helping your DD deal with her OCD in the school environment, or if they think your DD needs professional intervention while in the school building? But again, in our experience, that needs to be secondary to keeping her in school in the first place.

 

We have now moved on to being in the place where we're expecting our DS to "learn to deal with this" more and more, but that's because he's been able to be in school every day, all day (an occasionally mental health day at home, notwithstanding), for nearly 3 years now. And he's planning on going to college next year, where he's going to have to be prepared to self-advocate even more, and find his way through those moments of distress, anxiety and exhaustion on his own, without me or his dad likely to be physically there to help him pick himself up. So, I understand what the nurse is saying and, with another kid, at another place in their health or development, I would agree with her. I just think her timing's off, and she doesn't get that.

 

So maybe if you give them more color, more examples of what your DD's day, as it currently exists, takes out of her. Give them some information that might help them identify her progress, however subtle, while keeping expectations and goals reasonable and not out of range for your DD in her state of health. With respect to OCD in the school environment, meanwhile, I might offer them a copy of Gail Adams' "Students with OCD: A Handbook for School Personnel." Though we had a good, functional IEP in place when we became aware of this book, it was a great tool for further validating the accommodations we'd secured and put them into perspective for the staff and administration, I think.

 

Your DD is brave, and it sounds as though you're doing a great job supporting her and advocating for her. And as good as her school has been thus far, I suspect that you all want similar things for DD with respect to her school day, in the end; it's just a matter of setting a reasonable time-table and "working the system" together so that the school can meet its requirements insofaras the IEP is concerned, and you and your DD can meet her needs.

 

Hang in there! And tell your DD it DOES get better, easier. And she's getting stronger, every day!

[LNN]

I know this doesn't address the questions you've asked, but if your DD has been battling this for 7 yrs and never feels "good" then it really raises a red flag to me that there's something - infection, environmental (e.g. mold), nutritional (e.g. methylation issues), that hasn't been tackled.

 

You sound like a mom who's really done everything to advocate for your child and I don't want to sound like I think every kid has lyme. I don't. But you mention who your dr is and I know he feels that lyme is not an issue for most of his patients, despite the high prevalence of lyme in the northeast and the large number of Pans families who've not recovered with "just" Pandas treatments and then went on to get better with lyme treatments. He also relies on a standard western blot, which is not a good test. Pandasnetwork.org has posted something written by your doctor on his lyme views which are 180 degrees opposite of my own experiences over the past 6 years. Of course I'm not a doctor. Don't mean to suggest I have more answers than anyone else. But...if someone says after 7 years of a diagnosis that they never feel good, and their lives (and the family's) are still being turned upside down, then something is not right.

 

I think Nancy has given you some great insights (as always). But if you're only relying on this doctor's rule out of other known Pans triggers, I really hope you'll consider another opinion. Maybe it's not lyme, but it sure sounds like some stone still needs unturning. This doesn't sound like a strep-only problem.

[momslove]

Nancy and llm,

 

Thank you both so much for your thoughtful responses!

 

I will check out the Gail Adams book and revisit the IEP goals with the supportive IEP team. I realize too that the special education teacher involved has not heard many of the horrible and personal details of the impact of this on DD. I sometimes forget that others can't simply know and appreciate how devastating it can be, especially when they don't see it in her because she holds it together (which in itself is an improvement). She is doing more social things now too. This can make some people think that if she can do that then she should be able to do all of school, but we have learned otherwise. The social is hugely important AND still difficult.

 

I appreciate the encouragement to also think about what might be missing in DD's treatment. When I say she has been fighting this since 4th grade, I mean that was when "it happened". It was 2 years later before a mental health provider diagnosed PANDAS. His approach was SSRI and antibiotic with positive throat cultures. Improvement was made, but seriously not enough. It was another 2 years (of searching) before we connected with Dr. T who has aggressively (in my opinion) evaluated for triggers and treated (found 2 kinds of strep, mycoplasma pneumonia, lyme, low vit D, declining immunoglobulins). He also referred us to an endocrinologist as other problems became apparent. Improvements were clearly made over time, but again, still struggling. This past summer, we connected with a nurse practitioner who specializes in lyme/co-infections and began utilizing her expertise as well (further attention to lyme and bartonella). Treatment over time has included allergy sublingual drops, dietary changes or attempts, SSRIs, antibiotics, antifungals, probiotics, vitamin D3, fish oil, levothyroxine, T & A, IVIG, CBT/ERP. MTHFR testing was negative. It appears there may be other problems with methylation, but I don't really understand all of that. We have a prescription for anti-viral now too, but have not used it yet.

 

Early on this journey, DD said to me as we headed off to an allergy clinic, "I kinda hope I have allergies, but what if it's not allergies?". I told her I had a lot of ideas of what else to do, but we were going to check this out first. I really didn't have ideas at the time, but she needed to have hope. That's the mindset I keep trying to hold. This group helps me generate other ideas.

 

Thanks again, so much.

[momslove]

So tonight DD is stressing. The special education teacher told her that starting tomorrow she needs to check in with her each morning to let her know what she plans to accomplish that day and what she did the previous day and where she will be during the class periods. DD says, "So I'm supposed to tell her every morning how sucky I'm doing because I can't do work all day and I won't earn credits... Then I'm supposed to go to my first class..."

 

I totally get how this is NOT a good plan for her at this time. I also totally get how the school needs to know where she is. I told her I am on her side on this and what she is doing to "do" 3 classes and rest inbetween is AWESOME. She said I will look like a helicopter parent. I told her I don't care. My vision of the checking in at this point in her recovery was to begin to build a relationship and to keep track of her location. I guess I have some work to do tomorrow...

[MomWithOCDSon]

It may just be a matter of framing it in a positive way for your DD . . .

 

Maybe the special ed teacher (is this the same one that's serving as her caseworker for the purposes of the IEP?) is being compelled to institute this process so that she can document things for the IEP? Does your DD not have a good relationship with this person? If not, maybe it's time to consider either working to build a better relationship there or changing it up . . . giving DD another teacher to report to?

 

Our DS, particularly during the period that he was not in school all day from start to finish, did check in with the special ed teacher/caseworker every morning. But for him, it was a positive thing, probably mostly because this guy was very special and was dedicated to helping DS stay positive, stay in the building, and stay engaged. If not for the positive influence of that relationship, I don't know what would've happened with DS.

 

I think your vision is a good one . . . give DD a chance to build a relationship with this person. Honestly, from your original post, it sounds as though the school may have a bit of an idealized view of your DD's progress, so this one-on-one check-in may be the best thing for everyone . . . give them a better feel for where your DD is in her attainment of IEP goals and reinforce your concerns that they not push her too hard, too fast. If she really is going to wind up reporting in, to some extent, with "how sucky" her progress is, that "suckiness" is a double-edged sword, of sorts. It may make DD feel inept, having to report it, but it reinforces the fact that she needs more time and more supports, rather than pushing. And if this special ed teacher is a good one, she'll help in rebuilding DD's self-esteem and sense of capability over time.

 

Get those rotors fired up! Sometimes being a helicopter parent is the only way to go! Much in the same way that "the squeaky wheel gets the grease"!