Need Input on School Situations

[momtocole1]

I wanted to poll the group to ask about your son's and daughter's and their school situations.

 

Can you folks share whether your child is in public or private school?

 

Did you have to move them out of public school because of PANDAS, OCD, etc....?

 

Are they able to go to school when they are in an exacerbation/flare up?

 

My son Ryan was in a public school until the last two months of 4th grade. (He just started 6th)

 

We had to take him out, he just could not do it. He was putting his head down, giving up, losing friends, etc., the list goes on.

 

We moved him to a private school last year and it was not the right fit so we had to move him again.

 

He is now in a VERY small school. It is actually in a woman's home. She is from India and she is absolutely amazing. She has her Master's in Special Ed and she has turned her home into a school. There are only 18 kids and they have a varying range of disabilities: Down syndrome, Cerebral Paulsey, Asperger's syndrome, more severe autism, brain injury. They are all very sweet kids, but they all for one reason or another cannot be in a large school and they would be lost in the special ed world.

 

My son is still struggling at this small school. He is shedding OCD behaviors on the high dose antibiotic which is great, but as you all know it is a slow process. We continue on this road that is more like a roller coaster. Hoping every day that we are one step closer to IVIG.

 

I am trying to explain things to his teacher. I gave her the saving sammy book. She feels really guilty because he is not getting much of an education right now. He is struggling with all writing and REALLY struggling with math (he could be a poster child for PANDAS symptoms).

 

I told the teacher that Ryan is improving everyday, that he has been through a very traumatic time with his most recent episode of strep, worst reaction/recover ever. I also told her that I don't care if he does any math problems or for that matter does any school work. I just want him to get out of bed every day and go to school. He is on a modified day because he just could not do all 6 hours. He is there for 4 1/2 hours a day, but some days that is a struggle.

 

The teacher is so wonderful, loving, understanding, but she sees him so happy during the social times and when they sit down to do the work he unravels.

 

I talked to him about it tonight and he said that he just can't sit still, that he is hot and that he feels like everyone is crowding around him. It is like he wants to jump out of his skin, and just bolt, like it is too hard.

 

If I take him out of school, I am afraid he will just fold. He is so lonely and just craves the contact with other kids. Plus, I don't think I have what it takes to home school him. But then I don't want to push him too much.

 

I thought about hearing about other kids school situations that I would be able to explain to her that we are lucky that he is even going to school at all, right????

 

Thanks for letting me vent...

[thereishope]

My son goes to public school. He is in kindergarten and currently has not had a PANDAS episode since starting school this year (knock on wood). All 3 of his bouts w/ PANDAS was when he was in preschool. He missed some school due to PANDAS, but he also attended during exacerbations too. When he attended during an exacerbation, he actually behaved better in school. He did distnace himself from the other kids, gravitate to specific activities, had issues with eating lunch there, and had 2 instances when the teacher had to bring something to my attention (1 was obsessive hand washing and the other was a full fledge meltdown when he tried to run out of the school). Getting to school was our daily struggle. Overall, when he was able to get to school, it was like he got a break from PANDAS for a bit. But keep in mind, he went only 2 days a week for a 1/2 day each.

 

As for his public school and kindergarten he goes to, the school knows his "situation'. He has an IEP in place for speech and PANDAS is reflected in the medical history. I had a very lengthy conversation w/ his teacher explaining what has happened in the past and what to look out for. And to try to group him with healthy kids. I have spoken to the principal, the health aid, the slp he sees, and I have emailed the school psychologist.

 

For my son, public school is the only option because of $, but I also think with public school, they are able to be held more accounable for things and I feel like it is the right place for him. But I do also like our school and it is a very caring place. I know not all school are like that.

[lss]

momtocole,

 

I have a son who is 10 yrs old in the 4th grade and is doing home schooling. We decided that after doing PEX we would keep him home for this year to help him recover. He was previously at a private school with a very academic work load, and although he was doing well academically, the tics were really the problem along with the handwriting issue.

 

We are using the K12 International Program through ICademy. We hired a private teacher who comes in 4 days a week for 5 hours. He too struggles with the handwriting, so the teacher has allowed him to use the computer when he has a written assignment. She says she can see how painful it is when he has to write something.

 

He also stands up at times, leaning on the desk to do his work, she gives him breaks, and she also allowes him to chose which subject he wants to work on (although they do it all at the end of the time). I actually had to "teach" him the other day because she was out and I think she gives him more leeway than I would.

 

Math is not a issue for him, he actually is very very good at math and loves it. One of the things that Dr. Cunningham has said is that stress can cause relapses in these kids, so there are days when the teacher just does not push him and shortens the day to 3-4 hours.

 

To make sure that he still has interaction with other kids, he takes golf lessons on Friday afternoons, and tennis lessons on Saturday morning. We also have great neighborhood kids who come over often in the evenings, to ride scooters, bikes or play video games. Although its not the same as having all the kids in a classroom environment, we try and get him as much interaction as possible.

 

The private school he was previously in last year was very understanding and is holding a spot for him to return next year, but I'm not sure that we will be doing that, as I don't want to put any more pressure on him, so we are looking into the public school in hour neighborhood.

 

K12 offers programs through alot of the states and is free, however, is not as flexible as the Private I-Cademy. BTW, the kids also have a virtual teacher that you can actually speak with over the computer thru a program called elluminate. I actually have conferences with her every other week, and our son can go to his "classroom" on the computer if he has any questions that the teacher here cannot answer.

 

Linda

[smartyjones]

I also told her that I don't care if he does any math problems or for that matter does any school work. I just want him to get out of bed every day and go to school.

 

momtocole - wow, it sounds like you have found a great school and teacher. Am i understanding correctly that the issue seems to be that the teacher wants him to be learning?

 

yes - i think you fit so many of us here too! my son didn't go to school the last 6 weeks last year b/c of school phobia. this after a bout of school phobia in the fall. granted - he's younger - now in kindergarten. luckily for us, we've gotten to a point where we are all on the same page. i think it's hard for teachers to switch their mindset b/c they see the potential in the kids and just want to help them develop that potential while we are wanting to just get them to be in school! i understand where they come from and think it's a challenge for them to take a step back and evaluate the whole functioning of the kid rather than the academic functioning.

 

my son is at a private montessori school that was trying hard last year to work with us but a little missing the mark. it's small so they couldn't carry him to the classroom with him fighting and couldn't risk him running out into the drop-off line as he struggled. they didn't want me to carry him in and bring the struggle into the small hallway in front of the classroom. i think he had school phobia issues due to pandas exacerbation but then when doing better had become a phobia habit. we disenrolled him over the summer b/c we couldn't risk that if they wouldn't take physical custody of him, we would be liable for the entire tuition.

 

we were then able to work out a system that he goes to before-care - i walk him into the room and once he's in the building, they can take him. it's been fine - only 2 small blips this year so far - of course, he's also not in exacerbation.

 

i tell you this b/c it is working as a good solution, but last year, in the heat of school refusal NO ONE even thought of it - not us, not the school - we all seemed stuck as how to get him into the building. when proposed, it seemed ingenious!

 

also through working with them, we had to make it clear to them - through many different statements - what our goals were - that he's there in the bldg, interacting positively with the other kids and adults. That's IT! I don't think it was until my husband stated emphatically, "i don't care if he learns a single academic thing this year!" that they seemed to get it. although we were saying it, they were still thinking of their ideas of what they hope to accomplish with the kids and thinking that's what we expected from them also. finally, we broke through and they seemed to be relieved. i think it's so hard for them to switch from the academic mindset and the potential they see. it's hard for them to get on board with what they see (maybe even unconsciously) as the low bar we are setting and realize that it's actually a very high bar for this kid at this time.

 

so, i'd say talk to her about small time frames - goals for the next 3 months - maybe start at 1 month. be very clear about your expectations from her as his teacher and work to understand her expectations from you and from him. therefore, you can get on the same page and she can better structure her interactions with him to meet agreed upon expectations. also you may want to check out anxietybc.com and if you find it helpful, ask her to read some info or print off pages for her to read.

 

good luck!

Kathy

[thereishope]

I also read that raised blood pressure can open up the BBB. So high stress situations and anxiety is something you want to try to control. My son has had increase in PANDAS symptoms in high stress situations. He's able to deal with them better now, but not the case while he was in the midst of an episode or recovering.

 

 

Math is not a issue for him, he actually is very very good at math and loves it. One of the things that Dr. Cunningham has said is that stress can cause relapses in these kids, so there are days when the teacher just does not push him and shortens the day to 3-4 hours.

[matis_mom]

Your teacher sounds like a dream-come-true! It takes someone special to care so much and give children that kind of attention. And the setting seems great, as we probably does not have the teasing that would probably be an issue in a regular classroom.

We are homeschooling, and I wonder what it would have been like for my 6th grader at school. His symptoms started last year and I remember one day seeing crying over his notebook because he just could not concentrate and get his Math done. He is pretty good at Math, and he could tell his brain was just not responding.

I don't know what would be best for your son, but I'm just giving you something to consider. At home, I can switch subjects around, I can tell him to go take a walk and come back, I can just give up entirely on that day and try to catch up the next, I can use some relaxation techniques to get the anxiety down so he can concentrate.

I think as good as your teacher is, it would be hard for her to do that when she has so many other children to teach and look after. I am also assuming she needs to stick to some kind of schedule to keep things going.

Also, I was always of the idea that if you kept getting up early you would get used to it and you'd be fine. So I always insisted on having everyone get up a normal time (not at the crack of dawn, but somewhere around 7 at least). My son has adrenal fatigue and the doctor said I just need to let him sleep. We have kept up his soccer, scouts, and other activities so we can't always get everyone to bed early (and he is 12 after all, it would be hard to have him in bed by 7:00 pm). So now I just let him get up whenever he does. He has bed-wetting issues and that interferes with his sleep, so I am trying to make sure he gets enough rest. If I had him in school, I would not have that flexibility.

I know for a lot of moms the academics have taken a back seat, and I totally understand. But for us, since my son's OCD/anxiety is not too severe, and he kind of has good days and bad days, homeschooling allows us to take advantage of the good days, and make sure he doesn't fall behind, at least on the basics.

It is however a little exhausting for me to have to deal with him 24/7. When my husband is home he helps out a lot, and I kind of step aside and let him manage all the OCD, anxiety, melt-downs, etc.

His sibling are very understanding and do get very concerned when they see "that look" in his eyes. It is kind of bitter-sweet.

But again, my PANDAS child is very sweet and cooperative, even when he is struggling with his symptoms, and I know that is not the case for everyone, so you have to take that into account too.

Well, I hope this helps. Just writing all this down is making me feel good about our decision to homeschool

 

Isabel