Diagnosis question

[7upMom]

Schools don't like things like IEP's because it is a tedious process and ultimately it costs the district money because it may, in the long haul, include hiring more intevention specialists to cover all the kids. Once the IEP is in place I think it might be legally binding and like a contract. The district has no choice but to follow what it says. That is what your tax money is paying for so if your child qualifies, go for it.

 

I am hoping he will, I just don't think the private school thing is helping him the way I was hoping for. I got the feeling they felt I was just "full of it" in a sense. When I brought up the therapist wanting to know if they would be willing to implement letting him keyboard instead of writing they told me that he actually needed to just practice writing more. I tried to explain how no amount of practicing was going to help him write better or make his hands not cramp, they just couldn't wrap their heads around what I was saying. I can just see it being a battle. If I had to homeschool , I would but its def not my first choice only due to having smaller munchkins that are twins still at home yet. I heard that they have advocates that will come to the school and help advocate the IEP for your child, so the Parental emotions don't overtake the situation??? I cannot even remember where I read this at, it was awhile ago, have you ever heard of that - or is that just a standard part of the IEP process?

[reactive]

Have a question about sons diagnosis but first I prob should introduce myself since I'm new. Been reading posts for a couple days and such great info here from other mom's. It is sad but yet ssooo very comforting to hear such familiarity in what we felt was just "our" world that no one could possibly understand- unf feels good to be wrong about that cause it seems everyone here not only understands but also is very knowledgable/helpful as well!

My 9 y/o son started showing signs at 18 mths- 2 years old looking back, of course at the time, just thought he had a very bad temper. Since then the last 7 years has just been uuummmm- chaotic? idk if that even comes close to describing it but I am sure you all know.

He was diagnosed with rheumatic fever ( even though we never saw a strep infection in him) at just turning 6 and placed on long term penicillin by Blanks in Des Moines, we've still always struggled with ups and downs in behavior ( still not knowing to relate the behavior to anything other than possibly mental health) and then when he was almost 8 his pediatrician removed him from the penicillin stating that was long enough for him to be on it and it shouldn't be an issue anymore. Within 6 months he began tic'ing and developed ocd symptoms. For months I was told it was due to an allergic reaction to his meds but after months of a cogentin and no change finally they sent us on to Blanks Childrens Hosp again and there we met with an immuno specialist, Dr Elliott who did a bloodworkup and 3 months ago he was diagnosed with PANDAS. He is taking penicillin but still regressing, we have our 3 month checkup in two weeks and I am armed this time with knowledge now to ask better questions and get more info!!! I think if I am not comfortable in anyway after that then we will be making an appt with Dr K in Illinois!!

He has always been such a smart kid- and I know you PANDAS mom's know thats not to brag and you understand how smart these kids are. He has regressed to the point SO far of hating math- the numbers stick in his head, hating writing- he said it is hard to make the tics stop in his fingers for that long and then it makes his fingers cramp making the tics stop to write. He also feels compelled to count his tics, at school he feels like there is a face in the wall that will come out behind him, he has separation anxiety( he has missed a LOT of school due to this), as far as behavior in school they see no issues ( its like he saves it all up for home which I think I would prefer but it makes it really hard to explain to the teachers when he is inpatient or explaining why he misses so much school or why homework wasn't done and they should excuse him- they are just surprised and astounded and think its a "disclipline ,behavior " issue at home. I have given them information to help explain, but it seems to make it worse. They know he falls asleep in school at times ( he has serious sleep issues) but thats really about it. His teacher tells me I just need to teach him better coping strategies at home ggggrrrrrr- she should only live a week in my home then she'd understand more.

Anyway-my question though is this- He has been "officially" diagnosed with tic disorder/ocd derived from PANDAS and NOS/mood disoder. Currently he is going to a private school but I do not feel that is working because they don't have to follow any protocol with him and I pay good money for them to refuse to give him the help he needs- not smart on our behalf! His therapist is trying to push for a keyboard but the private school says no- not fair to the other kids. ugh so I am thinking about the public school its not big where we are in Iowa and would like to get an IEP. Since PANDAS is not in any category of a diagnosis and they are telling me tic disorder/ocd from PANDAS do I need to have the diagnosis separated??? Gosh I hope that makes sense- I know what I'm thinking in my head but am having a hard time having it make sense?? and my husband lol is telling me remember if they want to read a book- they'll go to the library lol. Thank you Chel

I live in Ohio, so maybe each state is different; but I told a little of my son's story to a second grade teacher I know, and she thought my son would benefit more from something called a 504 instead of an IEP. She told me the 504 was more for medical problems and the IEP is more for behavior. For example, more time to take a test due to not being able to finish in time due to OCD, ect. We were told by a developmental pediatrician our son may need a keyboard, but we never got to that as his symptoms come and go, and we don't need it now. I'm not sure how that would have worked in 3rd grade? I do know of a family that had to leave a private school as the school did not have the resources to deal with their DD's dyslexia and ADD. She did much better in public school, having those resources. I always say, private school for middle kids, public for advanced kids (access to gifted programs) and kids with needs. That is why I never considered private school for my ds. Just my opinion, though.

[thereishope]

reactive, perhaps you menitoned this already, but where in Ohio? I'm in Cincinnati (Anderson Township).

 

My son has an IEP so that's what I am more familiar with. If it's accomodation or having his medical situation on file, then a 504 may be more what you want. If you want services an IEP provides that. My son recieves speech therapy through the school district, that is why he has an IEP. Now if I wanted to add PANDAS, OCD, etc, since I have a pre-existing IEP they'd probably just tack it onto that to make it easier. Like I said, I have PANDAS in his med history section along with an explanation.

 

I also had a long conversation with his teacher about what has happened and what to look out for.

 

I notified his slp and my other son's teacher too.

 

The office has it on file to call if strep hits either grade.

 

As for an advocate, yes, you can have one accompany you through the process. I haven't needed one since they haven't given me a hard time. My district also has a "support system" for parents whose kids have an IEP, 504, or any concerns about their child. You can look into yours has something similar. They can help with the process too.

 

The rule is ask for loads of stuff so you have a bargaining tool to lower what you werre asking for if they fight you. Example, they wanted to give my son 30 min of speech a week. I asked for an hour. We settled on 45 min. People don't know they can request more than what they are offered.

[reactive]

reactive, perhaps you menitoned this already, but where in Ohio? I'm in Cincinnati (Anderson Township).

 

My son has an IEP so that's what I am more familiar with. If it's accomodation or having his medical situation on file, then a 504 may be more what you want. If you want services an IEP provides that. My son recieves speech therapy through the school district, that is why he has an IEP. Now if I wanted to add PANDAS, OCD, etc, since I have a pre-existing IEP they'd probably just tack it onto that to make it easier. Like I said, I have PANDAS in his med history section along with an explanation.

 

I also had a long conversation with his teacher about what has happened and what to look out for.

 

I notified his slp and my other son's teacher too.

 

The office has it on file to call if strep hits either grade.

 

As for an advocate, yes, you can have one accompany you through the process. I haven't needed one since they haven't given me a hard time. My district also has a "support system" for parents whose kids have an IEP, 504, or any concerns about their child. You can look into yours has something similar. They can help with the process too.

 

The rule is ask for loads of stuff so you have a bargaining tool to lower what you werre asking for if they fight you. Example, they wanted to give my son 30 min of speech a week. I asked for an hour. We settled on 45 min. People don't know they can request more than what they are offered.

Good to know. We live near Akron.

[7upMom]

That is really good to know!