Practical Advice needed

[azzuranotte]

I am a single parent, who currently works part time while the kids are with their dad or my mother will babysit, particularly if ds refuses to go with his dad. My son was diagnosed with PANS in October and because of anxiety and school refusal has been home pretty much full time since then. I have been accepted into grad school for the fall. Staying home indefinitely with him is just not an option. If it weren't for living with my mother rent free, I don't know what we would be doing right now. (She also may have to move, because of her job.) How do you do it? Is there always a parent home with your PANDAS kid or have you figured out another way?

[azzuranotte]

Over 100 views and not 1 response.

[ibcdbwc]

I'm sorry you didnt get any responses. This board is not as active as it once was. And many on here are looking for answers as we are still on the journey. Perhaps no answer is the answer? There is no right answer. Every situation is unique.

 

I can say for me, my son was home bound for a while and I was "forced" to stay home with him. We had no other option. No other parent, and no grandparent. Slowly but surely we got him back into school. But I remain on call because you just never know.

 

I do hope you are able to attend grad school. But as for how? I have no idea. There is no way I could have done this during my sons worst time. Even today I have trouble focusing on anything other than making sure he is recovering. I suffer from a sort of PTSD in this regard. So if you can find a way-- I do hope you will succeed because ultimately taking care of yourself is indeed the best way to help your son.

 

How old is your son? With treatment for PANS, he should be able to attend school again (if school age)?

[MomWithOCDSon]

I'll echo ibcdbwc -- sorry to have initially looked but not responded. I felt certain some other folks would have something more practical to add than I might as, similar to ibcdbwc, we've pretty much come out the other side of this thing now and, fortunately for me, my DH and I were able to trade off supervising our DS as he went through not being able to be in school, though we didn't have any other family around to "spell" us at all. Yes, I worked with my employer to telecommute several days per week, and DH had been self-employed and working out of our home for a couple of years before the PANDAS hit. So, really, I was re-arranging my work terms in order to provide DH with some support, rather than leaving him "holding the bag" 5 days per week.

 

That being said, our DS was unable to attend school regularly for about 5 months, but three of that were prior to our getting a PANDAS diagnosis and appropriate medical interventions; once he started the correct antibiotics, he improved to the extent that we were able to work him back into a school routine. Hopefully, that will be the case with your DS, as well.

 

I would reach out now to the school and request that you commence a 504 or IEP Plan process to give him added supports while in the school environment; frankly, an IEP Plan will provide him with the most supports because, in addition to accommodations, he'll be entitled to a resource class period and a case worker who'll help him -- and you -- navigate school with the behavioral issues that PANDAS can bring to the table, including the school refusal. For instance, our DS was terrified of going to school and wanted to refuse, so, with the help of an IEP and the case worker, we worked out easing him back into a full school day gradually.

 

All the best to you.

[dcmom]

Again, I am sorry, as I looked but did not respond. I don't have a response that you will want to hear, so I was hoping others would chime in with more positive thoughts. I have two daughters diagnosed with pandas seven years ago. It has been up and down. Sometimes a few years of remission, other times, year after year of flare ups. For me, with two, it has been really hard to work. I was and currently am a SAHM, but we did plan for me to go back to work- and we really need it financially. Initially when they were diagnosed, we put that on the back burner. For my kids, school refusal due to ocd surrounding things involving school is really the only symptom they suffer from now. It is unpredictable. I started working, a few years ago and had to quit mid year. I started working the next year, and had to quit again. I also was accepted to grad school to do a career change, but have put that on the back burner. I could go to grad school with the help of family- but I am doubting it is worth the $$ if I am never able to work. My kids are older, high school and 7th grade, and TBH they still need me at home in a flare. In fact when a flare comes now, they sometimes get really depressed (my older had suicidal ideation last year) so we now have a policy of not leaving them home alone at all in a flare.

 

This is not good news. I don't know what to tell you. Some parents can work, and some pandas kids can attend school even while flaring. Mine cannot.

 

It is early on for you to make decisions- you need to see the pattern of his illness. But- you need support. It will be very hard to impossible to do it alone. Can you move with your mom? Will she be a willing partner in caring for your son? I think you need (if possible) to sit her and your ex down and all have a frank discussion about the future. Do you get alimony or child support? Is there the option for more? I think you need to plan for a worst case scenario that your son will need a caregiver (and not a teenager) at home until he is 18. It will not be constant- and this is worst case- but if you can plan for that, and things are better great!

 

In the best world it would look like this- you, the Dad, and your mom all agree that there may be times your son will be homebound and someone needs to be there. Either you alternate who takes a leave from work, and you do grad school (at night?) and pursue a career, or depending on finances you decide one of you stays home, maybe works from home or a smaller part time job.

 

It sucks- there are no easy answers.

[azzuranotte]

Thank you for the responses. My frustration level was particularly high this morning. I currently live with my mother and she will help support us for as long as necessary. So that is a blessing, but there are of course other issues being an adult living home again. She has also been out of town for a week and will continue to be for the next 2. I would love to have an understanding with their Dad, but he doesn't believe the diagnosis. I will have another conversation with him regardless. Child support? HAHAHAHA

For my own sanity I need some sort of life outside of this care giving. I am still waiting for my funding info from my preferred school. It could really determine my decisions. I've also applied to an online school, though I have my reservations about that one.

 

He's 10 and back in school part time. School refusal is his biggest symptom. Sometimes hard to distinguish if it's PANS or I hate school. I'm thinking I have to line up a backup caregiver of some sort.

[azzuranotte]

We have an IEP, but it's current incarnation doesn't provide much support. It's more reactive to the behavioral issues he had at the onset. He is in a resource classroom, which is helpful. What parts of your IEP have you found most helpful? And I realize some things are individualized. I keep pushing for a smoother transition between normal school days and home instruction. We get stuck in this waiting period where it takes a month to get it implemented and then he's back in school.

[MomWithOCDSon]

We have an IEP, but it's current incarnation doesn't provide much support. It's more reactive to the behavioral issues he had at the onset. He is in a resource classroom, which is helpful. What parts of your IEP have you found most helpful? And I realize some things are individualized. I keep pushing for a smoother transition between normal school days and home instruction. We get stuck in this waiting period where it takes a month to get it implemented and then he's back in school.

 

Part of what was difficult for our DS going to school was the chaos, noise, pushing/shoving that went with passing periods, when the doors opened first thing in the morning and the final bell at the end of the day, etc. So our IEP included an accommodation for him to come into the building 5 or 10 minutes early via a staff-only door; then he could go to his locker or the resource classroom or wherever he needed to go ahead of all the chaos of the rest of the school population. He was also permitted a 5-minute head start on passing periods for the same purpose. And then, when he left school for the day, he was again allowed to exit via the staff door rather than having to contend with all the other kids.

 

I don't know if school work/home work itself is an issue for your DS, but for ours, it contributed to his overall reluctance to go to school. He abhorred repetitive, "busywork" types of assignments; perceived them as a waste of his time and, to be honest, they were. So the gifted teacher very kindly/wisely advocated for an IEP inclusion that allowed for "reduction of assessments and homework for quantity, not quality." So, if he could demonstrate a full grasp of the math concepts by doing 5 of the more difficult problems instead of 25 problems with repetition of the steps and/or concepts, then that's what he was allowed to do. This accommodation prevented the "snowball effect" that can be created by the more conventional accommodations of allowing "extra time" for assignments and/or tests, because that extra time can lead to things just piling up, rather than getting done.

 

He was also allowed to skip school assemblies, pep rallies, etc. as, again, the sheer noise and chaos of those events drove him out of his skin. And he had a once-per-week session with the school social worker so he could decompress and share with someone on-site things that were bothering him or that he struggled with. In the end, the strong bonds he developed with the social worker, the gifted education teacher and his case worker were what made school "fun" for him again, and made him more willing to attend.

 

Family support is awesome to have, and I can completely relate to the idea that you need some time/opportunities aware from care-giving for yourself, as well; yeah, without a spouse or a retired parent or something to help pick up where you leave off, you may need to try and find a supplemental care-giver. Not that it's the same thing at all, but were I in your shoes again, with a kid your DS's age, I think I might see if I could find someone who works with, or is studying to work with, autistic kids. In the heat of his illness, my DS's sensitivity to his environment, his mood swings, his more challenged communication skills, reminded me to some extent of the challenges I've seen some autistic kids deal with, so I tend to think that a care-giver who can be sensitive and supportive to those sorts of characteristics would have more patience and compassion for my PANDAS kid. Just a thought . . .

 

All the best to you. Hopefully, the medical treatments are going to continue to drive improvements, and some of these concerns will dull or maybe even entirely melt away over time.

[dcmom]

Hi again. I am in NJ too. I will private message you my email if you would like to chat online for support or whatever. We ended up getting an attorney to do IEPs last year. The biggest thing we put in was that-

1. Homebound instruction should begin after 5 consecutive absences without further documentation.

2. While on homebound instruction, student shall still be allowed and encouraged to attend school for any time period during the day possible.

3. When returning to school after being on homebound instruction, homebound instruction shall not be removed until student attends school full time for two weeks.

 

Our school just would not try to grasp the issues. If our daughter needed homebound, getting it started took WEEKS. Then, if she was ready to go back to school, they wouldn't allow it until she got a doctors note. And then, if she was back for a few half days, they would start pressuring her about when they could cut off homebound. This is high school- Both of my kids were able to attend fully in elementary school even during flare ups. Middle school was harder, but the school was sensitive and supportive. The hit the fan in high school- which is why I encourage every pandas parent to get their IEPs as beefed up as possible before that, even if your child is doing great (mine had been asymptomatic for almost two years) and the middle school is handling it beautifully (ours did- yet HS same district- a disaster).

[azzuranotte]

It must be a Jersey thing, because this is the biggest issue I'm having with the school currently. Thank you! This gives me some ideas to work with.

[dcmom]

Where in NJ are you?

[mama2alex]

School refusal/separation anxiety was one of our our biggest issue right from onset, so I totally get your frustration. Once we started seeing improvement in many of ds's issues, it became clear that we would need to go beyond infection treatment to deal with the school refusal. The behavior had become "stuck." We went to the Rothman Center in South Florida and did the three-week intensive OCD clinic (using CBT and ERP). We worked with an absolutely amazing therapist there and saw miraculous improvement in school refusal after returning home, and when it reared it's head in the future, we had tools to deal with it. I would recommend looking into this - a number of families on this forum have taken their kids and can share their experiences with you if you ask. It could very well get him over the hump of going back to school regularly, and solve your practical problem while you continue to work on the infections. Also, I believe this clinic may be branching out to other locations and they may be flexible on timing, such as doing two weeks to start, if you can't get 3 weeks off work.

[dcmom]

I second Mama2alex's recommendation of the Rothman Center. We have been with both daughters and are big fans. It does not replace medical treatment, but it really helps, and gives the whole family coping tools. That being said, it has not prevented us from subsequent flare ups with school refusal-