My little Landon with DMD, now age 7 is having behavior issues partly due to him just being a defiant little boy not wanting to do his work at school and partly due to the steroids. We have been working very hard the last 6 months with him on impulse control and such. He is also in one of the exon skipping trials and as we all know, none of us know if he is getting "active drug" but I have seen an enormous increase in his energy levels in the last 3-4 months in turn making him sit still has been a challenge. The school he goes to knows all of this...they know his diagnosis and he has an active IEP...there is no discussion in it on behavior issues because he has never had severe enough behavior to address in an IEP. The point to this post is that last Wednesday when I picked him up from after school care the first word out of his mouth was "I got tied to a chair today". WHAT? Yea, my first thoughts were horrific! Turns out they used a "seizure chair" as I was told because he was "acting out, smacking at the teacher and took his shoe off and threw it and they used it to "calm him down". 

 

Okay... so I am getting him out of this school immediately! I am just not sure what all I need to do....press charges, move him and try to forget.....what all can I do? I am consulting with some legal professionals and trying to get all the information I can from every source I can which is why I am posting here to the people who I feel can truly understand my rage. Here we work so hard to keep our boys strong and as healthy as we can in every way and the people we are supposed to trust to be part of our "team" do something like this....any advice, direction, ideas from any of you would be so appreciated.

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Joanne! Brian Denger, our Parent Advocate will be in touch. That doesn't sound right. 

Sincerely, Ryan Fischer


Thank you! Any advice will be welcomed! I can be reached at joanne.hathcoat@yahoo.com or 870-919-3871

 

 


PPMD said:

Joanne! Brian Denger, our Parent Advocate will be in touch. That doesn't sound right. 

Sincerely, Ryan Fischer

Hi JoAnne, 


Sadly, this highlights the need for a behavioral intervention plan before this sort of thing happens (Certainly school personnel should have seen this was necessary.).  A behavioral intervention plan outlines appropriate actions with the goal of avoiding the escalation of an outburst and setting boundaries for the student and staff.  While you may have told them of your son's situation orally, a written request to evaluate for possible behavioral problems is the more appropriate way to ensure the school assesses your son.  The old adage that an oral contract isn't worth the paper it's written on applies as it allows people to deny they were ever told and it becomes one person's word against another's. 

That being said, your being unaware of the process does not excuse how they reacted.  At this point I urge you to contact the Disability Rights Center in Arkansas:

Disability Rights Center

1100 North University, Suite 201

Little Rock, AR

501.296.1775 or 800.482.1174

e-mail: panda@arkdisabilityrights.org

Web: www.arkdisabilityrights.org

The center has an education advocate who should be able to direct you to the appropriate remedy for this situation.  The school's personnel should not have restrained your son in this manner and they should be able to guide you to correcting this and adopting a more appropriate intervention plan.

Wishing you the best,

Brian Denger

 

Thank you Brian...I will call them immediately for guidance. I am moving him school districts today...I do not feel my child is safe nor in the best hands there anymore. Thank you for your help!

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