warning:vent! Horrified by school!

[Cleopatra]

"I am also not looking for a one on one aide. That would be an awful thing to make the child dependent on another person. I am simply asking for a an aide to placed in the classroom to help the teacher. How can she be expect to teach my child or any other child if my child is on the floor 20 times in a 45 minute period."

 

Joybop ~ My dd's Special Ed atty. was free because it was based on income and since I can't work due to dd's PANDAS, I qualified easily. She missed all of 2nd grade last year due to her disorder. Made it to 1st day of school and that was the end of it. She couldn't be tutored until February, even though her HHB began in December, because she was debilitated by her disorder. She was passed through from 1st to 3rd grade without ANY assessments or evals by the school. After treatment, I got her on dual enrollment in April, just to try to transition back to school (physically get her in the building due to her extreme anxiety). That took 6 weeks and failed miserably. The reason was, and I was able to see it during that 6 week process of pain, that it wasn't anxiety causing the problem. It was the cognitive deficits and executive function issues that were overwhelming dd resulting in anxiety, increased OCD and tics! Thank god I went with her and sat through those classes (not that she would let me leave her!) and saw that something else was going on. I got her a neuropsych evaluation which revealed all her issues in incredible detail including a 59 point drop in IQ from 160 to 101! (*yes, all children drop in IQ level when testing is done at an early age, but, even if 30 points is average, another 30 is EXTREME!). The school accepted this eval and it finally got them to sit up and take notice. This along with the special ed atty got my dd into a pre-trial conference and a got her a para 3 days later.

Joybop ~ the reason I copied your comment at the top of my post was to respond and say that you are incorrectly assuming that having a one on one para would MAKE a child be dependent on them. On the contrary, without a para my dd couldn't function in school at all. She couldn't get past the first 15 minutes each day if she didn't have the para to unpack her bookbag, turn in her homework, put her bag on a hook, get out today's books, copy the posted work from the whiteboard into her weekly planner, etc. and organize her. Her short term memory is shot, so, she can't remember simple instructions and can't be given more than one at a time. Of your ds takes 1/2 hour to get packed at the end of every day and ends up on the floor 20x a day, then, I would strongly suggest getting a neuropsych eval and a dedicated para to support your child's needs. My dd is the only child out of 800 in her school with a para, and yes, it's not what anybody wants for their child, but, may be what they need. Her para does her best to foster independence while constantly being available to my dd.

Jferinga~ my dd is currently being assessed for an FBA in order to determine need for service and I just don't get it at all. I don't see how a behavioral plan can help with medically driven cognitive deficits and behaviors. My atty just kept agreeing that they have to do this. There's nothing they can come up with that will fit my dd's situation. It seems like the SChool District is on autopilot here regardless of what is known about dd's PANDAS disorder.

[JoyBop]

Sorry, I meant to say it would be the worse thing for my child, of course not a child that needed a full time, devoted aide. My son sounds similar to your dd but not as severe. He is able to make it through the day and function but he needs a lot if assistance. Sorry that comment came out the wrong way as there are definitely children that do need and deserve a full time aide.

 

What is a para? I've never heard that term before. I'm shocked that they were able to give your child an aide without an IEP. Everything I've heard here (unless it's just an excuse) is that no one gets an aide without it being directed on the IEP. I think they use that as a road block in our district.

 

I'm also shocked that they would allow your child to go from 1st to 3rd grade with out any kind if catch up plan or eval. It's not surprising at all that the iq would drop based on the fact that the testing is specific to grade levels. I'm sure your dd will catch back up once she gets back on track.

 

I can totally relate to everything you said about your child's symptoms. Im hoping that getting a good plan in place will prevent it from getting more severe. For now im thankful that he is able to go to school but I can see that it gets harder all the time.

[Cleopatra]

No worries. I was not upset by your post at all. I was trying to explain that if your son is on the floor 20x every 45 min. as you say, and needs so much help getting organized I would think you should be asking for a full time dedicated para (paraprofessional) that is one on one. It is the best thing for any child needing that much assistance.

Somehow, a one on one para is considered an accommodation on our 504. It is also offered on an IEP. Here, the IEP is meant for services. But, my dd doesn't need the services they offer, yet does provide for an OHI which she needs in order to have her medically based disorder recognized

Her IQ score dropping had nothing to do with missing school. She had previously been in the gifted program and working 1-2 grades above level in every subject. The drop was caused by her brain inflammation.

In any case, I hope you can see past the stigma of an aide. It has turned my dd's educational experience around 180 degrees. She got 4 A's and a C (in math, of course) this marking period in the Gen. Ed. program and she's having way fewer issues, zero trips to the nurse or phone calls home to pick her up. I hope you get what your son deserves and needs.

[JoyBop]

Thanks so mix Cleo! I would be thrilled if they gave him a para. But that is very unlikely unless we go to battle and take them to court. I will do it if I have to! I am so happy that our psych will be doing an observation bc I have very little info on what happens in school. So glad to hear about your success!

[Cleopatra]

Joybop~ Honestly, if I hadn't been allowed to transition my dd and sit with her every day in the academic environment, I would never have had any idea of what was going on either. I would have just automatically assumed it was an anxiety problem, as many PANDAS parents do, when their child doesn't want to go to school, or, has problems there. Instead, I got the opportunity to witness firsthand what was going on and, while I had not idea what the problem was, it became clear to me that something else was happening besides just the anxiety. Once dd got over the anxiety of going back to school (starting , actually) in Mid April for the school year, I saw that even with a boatload of help from her friends, prompting and directing, explaining things to her (ie. which book to use, which books were in the cubbies vs. desks, etc.) she still couldn't follow along and keep up. Have you considered a neuropsych evaluation? I found a hospital (4.5 hours away!) that took our insurance and covered it. I got an Angel Flight for us to travel there. Was worth all of the effort. Was the single most important thing I did for dd re; school. Even more important than getting the lawyer, but, that was key as well. I had to go to a meeting with 14 people including my lawyer and Certified Behavior Analyst and myself. The rest came from the school district side! Honestly, they were all shell shocked when the neuropsych eval results were brought up. Gave them the most incredibly detailed info. they could ever want and then some. They all went white and clammed up when they saw what an independent Hospital eval had to say and the psychologist/tester directly related her deficits to her PANDAS.

[JoyBop]

Thanks for sharing all if that. What did the neuropsych report actually show? We are getting an abbreviated one at the NIH in Jan. I have no idea which portions they do but I assume it will relate to pandas. If there are any red flags I will have a nueropsych done. But that type of testing goes to my deductible and I will have to pay &1000. So my plan is to wait until we max that out, or if he flags anything with the school eval or testing at NIH. I was told the test results are sent out 1 week after our discharge there so I'm excited to be able to get the results so quickly.

 

Our school downplays everything since my child isn't a behavioral problem so to speak. He is sweet and charming and is not throwing chairs or biting anyone so they can ignore him easily, is my impression. The principal told me she observed him and he was just fine. I will totally trust our psychiatrist on this one with her observation. I know my kid would act up a lot more with me in the classroom. I wonder how he does wih other Observants in the classroom ?

 

He will be out of school for a whe week for our trip to the NIH which is putting a lot of this on hold. But I do have a meeting with a school social worker next week. I have no idea what her role is but I was told its a developmental history interview. Ever hear of that?

[Cleopatra]

I know the test is super expensive . What are you going to NIH for? The test won't be PANDAS specific. It is a measure of many detailed indices related to one's ability to learn, take tests, read, comprehend, verbal skills, working memory, executive function, processing speed, etc. if you give me your email address I am happy to send dd's eval so you can see what one looks like.

A developmental history is a combination of any known info (previous testing info, school grades, etc.) plus what info. you give them about your child. My dd had previously been tested for the gifted program 3.5 years earlier so the tester had that eval and a baseline for some comparison. My verbal history of my dd supported the sudden onset aspect of her sharp drop in abilities. With HD IVIg treatments dd is recovering in many areas, but, some are not responding as well to treatment.

[JoyBop]

The NIH is dr Swedos natural history clinical study. The testing will be specific to deficits found in pandas patients. It won't be a full nueropsych, just those portions of tests that ring a bell for pandas kids. One part that I am aware they are testing, and was mentioned by dr latimer at the pandas conference as a good one to look at for pandas is Rey osterich.

 

Thanks for explaining the developmental history. I was a little nervous that they were trying to see if we should be reported for something bc its a home visit. So your child had no deficits and was very bright prior to the onset? My child wS as well. I'm curious to see if there is a decline In Cognition in addition to factors that are not allowing him to participate and cooperate in school. (Or focus)

[smartyjones]

joybop -- I definitely want to look on the positive side of this and think that the school is trying to help and gather information that will be helpful in supporting your son -- I also know that you are working tirelessly to find answers and solutions for your son -- I do feel that sometimes that can be a dangerous combination -- in that we think we are being helpful and there is so much to explain, discuss, educate about

 

so -- when I read your last post, I am reminded of Beth Maloney's words at the Providence convention about if you find yourself in dealing with a less than supportive hospital or legal situation, and want to have you just keep that in mind when you talk with the school social worker -- it was something like -- 'you need to think of everything you say as how it would also be used against you'

 

not that I think you are in that troublesome situation -- just that it is good advice. the people that we deal with do not live our lives and as good intentioned as they may be -- sometimes it is just impossible to understand a path you have not walked in.

 

so -- I'd say have notes and outlines of what you want to have the social worker know. take time to think before responding. be clear on what they are asking, trying to discover, or suggesting. don't hesitate to say, 'I'm not sure, i'll have to look it up and get back to you' or "I'll have to really give that thought before I can give an accurate answer"

good luck!

[Cleopatra]

BTW... I did not have a school social worker do my dd's developmental review, it was part of her neuropsych eval. I would get an advocate a.s.a.p. They are not expensive. You should not, IMO, talk to the social worker. Smartyjones is right. You never know what will come of your mtg. or how the info. will be used in the end. I would start getting my ducks in a row.

[peglem]

Just want to share my experiences w/ functional behavior assessments over the years. My child's "behaviors" are largely due to obsessive thoughts and compulsions. But when she was being observed for behavior plans, the observer almost always "invented" a reason for the behavior, since, of course, they could not fathom what she was thinking. So, the causes of her behaviors were thought to be task avoidance, problems transitioning, etc. Behavior plans were put into place that addressed these, and they always failed because they were not really working on the underlying problem. Finally, in her sophomore year of highschool, (new school, new observer) we got a person who observed her every day over a period of 2 weeks and was not afraid to admit that they could not identify antecedents to her behaviors. This person also was familiar w/ OCD and treatments. What a difference when they began helping her find ways to deal with what was happening internally, instead of trying to shape her behaviors w/ external motivators!

[Cleopatra]

peglem~ that's exactly the problem I have with my dd getting a functional behavior assessment. All the school sees is the anxiety, OCD and ticcing. What they don't see, or want to see I should say, is the cause behind the anxiety. My dd's anxiety at school is caused primarily by her cognitive deficits. It wasn't until I produced her neuropsych evaluation detailing those deficits that the school district finally understood what was driving her. When they sat in the class and watched her run out the back door, they ASSUMED it was because of their "invented" behaviors for her since they also could not understand what was going in her head. My atty. said to let them do it (it's required, legally, here for an IEP to be put in place) even though I cannot see it's value. He said it would help them put together a plan for dd's paraprofessional to implement. Well, I have already given the para training along with a functional behavior analyst I used who also happens to have a child with PANDAS and autism. Can't do better than that, I would think. Ugh! I started this process last April and it is now January of the following school when we will finally circle back and meet to determine whether dd gets her IEP or we go back to court with them. The whole process is flawed, if you ask me.

[JoyBop]

Oh my goodness, such great feedback from all of you! Thank you! You are all helping me get a good thought process in order before this thing goes in the wrong direction.

 

Smarty, excellent advice! I was at the conference but somehow that wasn't in my radar with this, so thank you. I will be very careful about what I say. The whole developmental history interview through me for a loop because he was perfectly normal up to this point and does not really have anything abnormal on his developmental history whatsoever. I will be certain to state that going in. I did sign off on the eval to add this person to our team and was told that she is a good go between for non-educational professionals (I e doctors.) I have heard from others that she can be a good advocate for the family if we play our cards right.

 

Peglem. Thanks for your input as well. There is nothing worse than a biased observation. Last school year we asked the school to provide a psychologist to do an observation. The district provided one and she put a label of attention seeking on each and every action and movement DS made. It was so bad that Our psychiatrist asked for it to be removed from the record because it was a judgement and not an observation. The school psychologist agreed and it was shredded. That was at a different school as our system has one school for k through 2 and another for 3-5. Its unfortunate because we just for a new principal who is not involved in anything and has no clue what's going on and the school psychologist is not the kind you would want running the show. She does not have the students best interest in mind.

 

Thankfully we have a team of pandas doctors at MGH that would stand behind us if anyone ever questioned our intentions as parents or the disorder in general. We do have our psychiatrist on our team and have the name and number of a great advocate should we need her. I did t want to call her in just yet as I didn't want to step on the drs toes and see how she handled things first. The school responds to her very promptly and positively so I don't want to make a bigger mess unless I need to.

 

In the end, my child is very bright and I'm sure he won't qualify based on educational deficits. But if we tackle this correctly we should be able to get him more assistance based on his ability to perform and function due to anxiety, OCD and motoric hyperactivity. In our state this falls under OHI and is based on medical condition. I am so curious to see how he performs on tests. They have already begun and I am aware that they are testing him verbally and not making him out pencil to paper. I hope they reflect this in the scoring and reporting but I wouldn't put it last them to leave that part out....but since I am aware they have made that modification, it will surely backfire if they try to go there.

 

Thanks again for all the awesome advice. My meeting is on Jan 2 with the social worker.

[Cleopatra]

Joybop~ The NIH study is not specifically geared towards PANDAS, it is a general study to see if there are genetic connections in families for a variety of behavioral disorders, PANDAS being one of them. I hope you get some valuable information that is useful to your purpose for your child. The difference is that a neurpsych evaluation is specifically testing your child against all other children at the same age for cognition. My dd had a previous evaluation for gifted testing, so, it was easy to compare and see the decline in my dd's cognitive abilities in black and white. It was a way of gaining respect and total acceptance for all of dd's impairments instantly without having to "convince" the school district she had them. It was right in front of them and done by an independent evaluator (Tampa General Hospital).

[JoyBop]

Thanks for all your info Cleo. The family study you are referring to is not up and running yet. This is a natural history study and I spoke directly with Swedos nurse practitioner and they are doing specific tests on pandas patients. I will be giving my maternal blood to be stored for later use, but again, this is not the family study that is posted on the clinical trial website.

 

Thank you again for all your insight. I'm hoping that the testing we had done last year will serve as a good baseline to show how he is performing now. I just have no idea how it will play out.