My son is has BMD and is going into the second grade.  He does not have an IEP.  He is still very strong.  Last year his teacher had some behavior and social concerns.  In general she said it seemed like he just didn't want to be at school.  He does have some anxiety.  We are currently having him tested through a private psychologist.  He also has trouble with computer tests.  He was scoring really low on the literacy test (but I knew my son could read better than what the computer test was showing) and when the teacher finally gave him a paper test he scored several levels better.  He is easily frustrated and will shut down very easily.  He will refuse to do things that make him "nervous" or that he views as hard.  He needs a non threatening environment and responds well to "wins".  His teacher last year called several meetings but did not recommend an IEP.  Mostly, I think, because his grades are pretty good.  I did find out that anything that is diagnosed by our private psychologist does not "count", if you will, until the school psychologist does testing (which have never been ordered).  Do you think I should demand an IEP?

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My son sounds exactly like yours, in every way and we do have an IEP, both for physical (he is very strong, but, we have it to "limit" him as we are very, very cautious about what Kelvin does and how much he does) and for school problems. Kelvin is very smart (scored in above average on some very high level tests at our Children's hospital), but, he has trouble applying himself and with everything you described. I think it is better to have it and if he improves, then you can always discontinue the IEP later, if he no longer needs it. I pushed for it as even though some didn't see trouble early on, I did. I got his MD doctors (at Cincinnati) to write it up for him to have a full evaluation (psychologist). Now, the entire school is out to help him. I think it really helped, but, I'm not one to hide anything about Kelvin. I want everyone to know, so we can all come together for the goal of a cure! Michelle
I would get an IEP put in place, he will qualify with his BMD diagnosis under Orthopedic or Other Health Impaired. It will make things easier down the road.
The process takes such a long time, I'd start now, just in case you want to move forward with more resources. We have one for both speech and physical. The latter he doesn't really need right now (only 5) but I wanted to get in the system to understand the resources available.
There are many misconceptions concerning Individualized Education Programs, IEPs, especially for students who have DMD. An IEP is the tool used by schools outlining supports and services (including related services such as transportation services) needed to allow a student to be successful in the general curriculum based on their individual needs. What is appropriate for one student may be unnecessary for another. There is a process to obtaining needed supports which begins with contacting the school asking for an assessment to determine need and appropriate help.

There is no guarantee a boy who has DMD will obtain an IEP. Especially at a younger age when many boys are able to walk independently and may be doing well academically. At this stage a school may agree to a 504 Plan (Section 504 of the Rehabilitation Act) which ensures access to all programs and has fewer legal protections. The major difference is the goal for Section 504 is to level the playing field to ensure a student is not excluded whereas under IDEA with an IEP a student is treated uniquely based on their individual needs. The decision is based on the group of people directly involved with the student's education, including parents, meeting as an IEP Team to discuss strengths and areas of concerns to formulate a plan based on assessments, observations and teacher and parent input.

A parent's first step in beginning this process is to contact the school to speak with the Special Education coordinator and ask for a complete evaluation of their son making note of areas of specific weakness. It is also a parent's right to undertake independent evaluation if you disagree with those made by the school's evaluators. Once the evaluations are completed the results are shared with families, sometimes in advance other times at an IEP meeting and the IEP team meets to discuss next steps. Again, it may be decided that a 504 Plan is appropriate, yet if parents think strongly this is erroneous there are steps to take to challenge this decision. Working with teachers and team members is important for parents to ensure information about their son's strengths and challenges are considered. Collecting information about specific areas of weakness and areas typical for DMD will be useful in helping the Team understands the nature of the disorder and the challenges your son faces.

An IEP is the document that outlines steps taken to support, remediation and assist a student. The assessments establish a baseline for the students ability and a set of measurable goals are established to gauge progress and compliance. Parents must be given a document that outlines their rights and responsibilities referred to as "Procedural Safeguards". This document explains the proper steps to challenge decisions, order independent evaluations and resolve disagreements.

This can be a difficult and confusing process, yet spending a bit of time in advance to learn how the process works, compiling information relevant to your son including a list of areas in which he needs support such as physical, academic, behavioral, socialization and adapted physical education concerns will make you better prepared when meeting with an IEP team.

A good place to start with learning about the process is: http://www.wrightslaw.com/ which is a website that has extensive information about the laws, preparation for an IEP meeting and working with schools when you disagree. Figuring out issues specific to students who have DMD is best done with other parents while understanding each boy is different, so some advice might be different than what your son needs. Posting questions on this message board will undoubtedly draw many parent responses with great advice.

Best of luck!

Brian Denger
Hi Lisa,

Another good resource is your states Parent Training and Information Center. I looked and saw you're in NC, you can find information here: www.ecac-parentcenter.org

I contacted mine after my sons diagnosis and they were able to provide me with the information I needed to get the process started, such as requesting evaluations, time frames that are in place, etc. Good Luck!

Kim
yes , you should . an IEP not only addresses his psychological needs but physical as well. the school needs to have resources for him to use when the need arises. if there is no IEP there is no provision of services for him to use.
you better demand an IEP and have the school allocate resources and arrange services for him ( occupational etc..)
My school uses an IEP for physical as well too, not the 504 plan. I think it depends on where you are at and the experiences of each. My school is wonderful and offer anything we need, pretty much. They will get a computer, etc. as soon as it is felt that it will help Kelvin better. They don't have the money, but, know that they will comply whenever needed. We will run into problems from 6th grade on, as we have very old 2 story buildings, so, we'll cross that battle in a few years. Kelvin's school already moved all of the teachers around this year, to accomodate him, next year. They are ahead of things. I'm lucky so far. Michelle

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