What to do when the current school isn't working for your child.

[JoyBop]

As many of you know I've been fighting to get my child more help in school but haven't gotten anywhere due to the fact that my child is very intelligent. His restlessness and inability to focus makes accessing his school program very difficult and there are 20 students in his class with one teacher. The teacher has told us he needs one on one supervision to complete any class work yet the school physchologist and principal insist he does "just fine". We are in the process of an IEP eval and I have our psychiatrist advocating for us. Our meeting is on the 22nd.

 

In the meantime I got much insight and guidance at the NIH. I was told to consider home schooling or at least finding a smaller class size if private school if that's an option. I wanted to knows what others are doing when the current school system fails to meet the child's needs, or the child isn't able to thrive in the current setting.

 

At the NIH, DS worked daily with the head of educational services on his homework. She adored him and they made a great connection. She told me at the end of the week that he really needs a one to one aide. Even in a private setting with her professional instruction he needed to be refocused and reassured every 10 seconds. She said that he is very smart but his disability is so great that he can not possibly access a program in an conventional setting without a great amount if constant assistance. She is writing us a letter for school that I hope helps

My two avenues are making the state pay for home tutoring (MA law provides this with letter from dr) and supplementing with music lessons and our private after school club that is at our camp and old daycare. They give personalized attention and would keep the social skills going. I would add in community service and find him some way to work with animals (maybe a dog walking job) to give him some responsibility and get him outside. He adores animals.

Any thoughts or words of wisdom?

[smartyjones]

joybop - glad to hear NIH was such a success. wow -- great to have those opinions!

 

I can't remember how old your ds is. mine was 2nd grade when we dealt with this -- 2 years ago. and, he was quite healthy. he was trying to get back into school after 1 year of homeschooling. his entire school career had been a mess -- 1 year successful preschool at age 3.5. next year pandas hit -- he maybe went 1/2 of the year; when he was there, it was mostly was troublesome. 3rd year, a lot of up and down with the addition of conflicts with the teacher about work refusal -- in retrospect, mostly surrounding handwriting.

like I said, he was mostly healthy but with a strong dose of 'reasonable' school phobia b/c it had been so troublesome. with an added bonus that he is pretty classic twice exceptional (when first tested, about a 40-50 point discrepancy in 2 values - bringing his IQ down to the 1% level).

the school did not understand him, thought I was the only one to understand this alien disorder he had and just thought he needed to obey and 'go to class because that's what the grown-ups are telling you to do' when he exhibited anxiety about going to class. we had doctors letters for both pandas and anxiety-nos on file.

 

so - we got him out of there and he was on hometeaching for 7 months. I don't even think it was b/c he couldn't do school -- it was that he couldn't do it there.

 

it was sad b/c he did suffer b/c he was really ready for social exposure but it was better because they just couldn't understand so lack of social exposure was better than negative social exposure. he had a fairly successful baseball season that spring. we were fortunate in that the teacher had a background in special ed and understood how he had 'Asperger-like' issues. she was very nice and helpful for him. academically, I supplemented but I don't think he really learned a full year's worth.

 

the next year, he got a spot at a great charter school I had been interested in for a couple years. they have a fabulous staff who was able to comprehend what I was telling them and did their own testing and observation and were able to get an accurate picture of him. knock on wood -- he has done great for the past 1.5 years. they are proactive and responsive. he has picked up academically without really missing a beat. he does type more than an average 4th grader, but he does not have provisions in his 504 for it.

 

I would absolutely say take the hometeaching and get your ducks in a row about what to do longer-term. it doesn't sound like he is having much success there at all, so are you losing that much? if you want to continue at that school, maybe you can work something out - but it will be less stressful for you and them if you are not doing it while he is actively struggling in the classroom.

 

my ds did have an anxiety issue lately. we had help from a staff member who knew anxiety and was amazing at handling it. handled incorrectly, it could have sent him into a spiral. with this knowledgeable intervention, it was a 5-10 minute blip. I think a staff that 'gets it' and can work with your child can make all the difference. I don't know if it's worth it for you to try to fight to get them to become that.

 

good luck! are you willing to share what NIH gave you as treatment options?

Edited January 12, 2014 by smartyjones

[nicklemama]

If you want to keep him in your public school you will have to find yourself a great advocate. I'd you lived in my area, I could give you a name.

[JoyBop]

Smarty, as always, thank you for all the insight!!! DS is 8 and in third grade. His classroom teacher is beyond wonderful and she deals with him beautifully, but she basically just allows him to wander around the classroom and disengage, as not to make him feel badly about himself. While this is good in some ways, it does nothing to address how to help him function better, or access the program. Also , all of the other teachers in school hassel him and dont allow the behavior and he cries every night bc "all I ever do is get into trouble!". Things like, "The gym teacher made me sit in time out because I was chewing my nails." The homeroom teachers allows him to wander, but the other staff members have a FIT about it! So what are we teaching him? He never knows what to expect, gets no help, feels socially rejected, receives no help with social conflict, and feels "stupid" all day, even though he is incredibly smart and charming.

 

I would be happy to share what they recommended at the NIH. I dont have the work up yet since the tests had not been read. Im expecting a write up on impressions and recommendations when we receive the results. I did have a 1 hour wrap up consultation with Dr. Grant and Dr. Hommer. (Both psychiatrists and incredibly kind, compassionate and brilliant!) The did not recommend IV Ig at this time as he was doing very well during our visit. (The stress of school is his biggest trigger, and he had been off for 3 full weeks....Doesnt get any better than that!) They said that IV Ig does carry risks and you only want to do it when things are extremely severe. I told them that he had been referred by our PANDAS docs at MGH, whom they respect, and they said that we should follow their recommendations. I asked, what if he flares again horrifically? Dr. Grant said, "Then you pick up the phone and call me and we'll talk!" (WOW!!!) DS had been on tons of meds that made everything far worse. We had weaned him off them all in order to do this study and I told them how much better it was. They were happy to hear that and said definitely dont go back to them. We had been told by some other docs to try Abilify if he got really bad again, but they advised us instead to talk to our doctors about trying a stimulant instead. They saw how restless he is, and how severe his ADHD like behaviors are and felt it was worth a try. They assured me that he would be better within a year or two. I told them that even though he is as well as hes been since the onset, his handwriting is still worse than its ever been, and math skills havent returned. They told me that its common and that it can take a long time for those things to come back. Overall, I got tons of reassurance that we are on the right track, have the right diagnosis, and that he WILL be WELL again!!! He wont loose anything academically. When hes ready and well he will catch up in a hearbeat. The best part of it all was that every doctor, nurse, aid, and staff member we met fell in LOVE with him and all told him what a special boy he was. This couldnt be farther from his experience in school, and sadly, even sometimes with his siblings who get fed up with the chaos all of this creates. He truly felt like a rock star, and I felt like a great mom doing everything right! (Very unlike MY "real life" as well) Im doing the best I can to keep these positive feelings and continue to see the light at the end of the tunnel. The biggest message I took home was that my job now is to keep him from becoming emotionally scarred by people in school. And if keeping him home or sending him to a private school for a few years will help, then Im full speeed ahead!

 

More on the convo about IV Ig, they explained that the only studies thus far have been on kids in the first 6 months of onset. My child has been suffering for over a year since the inital onset and was untreated for more than 6 months. They just dont know how effective the IV Ig is in those scenarios. We came SOOOO close to getting into the IV Ig study, but at the time my son was suicidal and they didnt feel he was stable enough to come to the NIH. Our immuno has recommended IV Ig, but that was during chronic flares. Well see what happens when he gets back to school....Or better yet, get him into a more positive environment that he can thrive in....Maybe thats my best answer for now.

[JoyBop]

Nickle Mama, I hear you. I have already hired our Dr. to be our advocate and I dont want to step on her toes just yet. If we fail to get anywhere, I think Ill put that money elsewhere instead, such as a private school or lessons to supplement the home school idea.

 

Does anyone have experience with the home/hospital school? It doesnt seem as though the school can disagree with the doctors referral for services, but Im curious to know if anyone has ever had the school refuse or put up a fight. Im guessing that my child will have to literally be unable to attend school to get these services. Now, he does willingly attend school, but mostly bc hes afraid he will be arrest if he doesnt. (Irrational fear) We still have a ways to go before I know how this will all pan out, but at least now I dont have to worry because I know Im not at the schools mercy, and I have other options. Even if I have to buy an online program and homeschool him myself for a couple of years.

 

Still, wouldnt it be a wonderful surprise if they were willing to accommodate?

[Rachel]

Does your state have K-12 virtual school available? In Oklahoma it's a free online public school. This is my son's second year. He's in 7th grade and it's been wonderful. He is on an IEP. The staff has been wonderful to work with and they have accomodiated his educational needs. All the curriculm is provided and a parent needs to sign up as the learning coach.

 

So glad your vist went well with NIH. Sounds like you learn quit a bit. Wish they would do a study on IVIG with the first treatment after a six month on set. I would really be interested in knowing those results.

[JoyBop]

Rachel, wow! I had no idea. I just googled it and MA does have a free online school called k12. Anyone out there have any experience with it? I would definitely consider if the other two options fell through.

 

Thanks for putting that on my radar! Would you please tell me what system you are using, if it costs anything, and how long you spend each day on school?

[Rachel]

Joybop,

 

The website is k12.com. I had to use that site to enroll my kid. You will need internet service because this is not included. Our school also provided a computer because my son was on an IEP. School does not cost us anything in Oklahoma. Any books for classes or supplies needed for Art class was sent to us. As the learning coach you log in your child's attendance daily and you have access to all your child's lessons. Your child attends classes online and is provided instruction by certified teachers. In Oklahoma, the kids must log in 30 hours of attendance anytime Monday - Sunday. So it allows a very flexible schedule if your child is having to do treatments in a hospital setting. As long as you have internet, your schooling is just a click away. In Oklahoma, there are several K-12 virtual schools. The school we were enrolled in was the one closest to our home district. We did have to get an emergency transfer but that was no problem. The school district understood and knew we had no choice due to my son's medical condition. Our school has outing for the kids monthly and they have many different contest. They even have online clubs the kids can join. Hopefully your state will offer something close to what we have. Wishing you the best.

[JoyBop]

Rachel that sounds amazing! So you spend 6 hours a day on the site? Are there any check I a or personal interaction with teachers or coaches?

[qannie47]

I I must say, for my highstrung twins, I don't think I would be able to get them to sit in front of a computer for 1 hour a day, let alone 6. Too Linear, not enough human contact. But I love the idea of home tutoring!! If you can get your district to pay for it, I say go for it. Plus, with a home tutor, I bet that because of the one on one instruction, much will be accomplished in a shorter timeframe and I bet that his school time will be cut in half, if not more. That might be good for your ds. Especially since he is on the bright side of the fence, his academics might really jump and even put him ahead of the game.

[JoyBop]

That's funny, my DS is just the opposite. He gets sucked into electronics and tends to tune humans out. I would also much rather the home tutor or better yet, the private school. The unknowns are, does the private school want a challenging child? And will the school protest our doctors request bc our child is able to leave the house. It will again have to be up to our psychiatrist is she is willing to put her name on that request. I don't want to be dishonest or take advantage of the system but I will get my child out of that toxic environment. The home school is a last resort for me. That would be the ultimate sacrifice as I would have to give up my job and the break I would have gotten while he was in school. Yes, as much as I adore him he is can be quite difficult to manage. I want what's best for him and hopefully the school will try to accommodate.

Edited January 13, 2014 by joybop

[Janny]

Also another online public homeschool is connections academy. I used them for 2 and a half years. They are great!

[Rachel]

Joybop,

 

My son is not online for 6 hours straight. He has assignments that can be done offline also. As his learning coach, I have to put in the answers for those assignments for grades. So you are part of your son's educational success My son's physical therapy counts for his PE time.

Rachel

[JoyBop]

Thanks Janny! Is that a public Ed program? It private? If so, what does it cost?

 

Rachel. Thanks for the input. I'm relieved as I don't even have 6 he's between the time I drop my last kid off and pick my first up. I'm wondering if I can even do this??

[T_Anna]

We are considering enrolling DS in Laurel Springs, its a private school out in CA. The kids have 10 months to complete thew curriculum and there is no semester or schedule to follow (they can complete in two months too, if they are speeding along). It is fully accredited and caters to children in sports and acting who don't have time to attend regulat school.

 

It was highly recommended by two different child advocates. A course costs about $650 (for HS) and a full course load was about $5k-6k.

 

DS needs to "own it" so today I will try to get him to sign on. He has been begging his siblings to let him do their homework, so we think he's ready, but that's different then having your own responsibilities.

 

T.Anna

DS15