I am sure this has been discussed before and I am sorry that I could not look over discussions enough to find an answer. After we returned from seeing Dr. Wong in November, I let the teacher know we needed an IEP. We are still waiting. But I did find out today the Jared will be assessed and that assessment from the school personnel (not sure their title yet), will have major bearing on what the IEP will say. Needless to say, I think that is ridiculous, and I am concerned that we will not get the proper IEP set up for his adaptive PE as he can do so much even though he shouldn't. His teacher is great and she helped advise me that goals are generally set up for each IEP and she was really only familiar with Academic IEP. But she agreed in Jared's case, it is backwards because we are not really trying to help him achieve anything but are trying to prevent further damage to his body. I would really appreciate advice on how to be better prepared for this meeting so we can do this right and based on the knowledge I have gained from the Dr's, PT's and from all of you on this website. Thank you

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Hi kari and kelli,

I am so glad I found your posts. I am currently going thru the same issue. I just signed the consent for evaluation of my son, who is 7 yrs. old now and attends second grade at the public elementary sch. in Southeast Florida. He likes to go to school,but he struggles academically in all areas. He is showing some difficulties with math concepts, reading comprehension,problem solving skills. According to the teacher she does not really see any learning disabilities at this point, but more a maturity and interest-concentration-attention issue. I am also confused as to what I would need to concentrate when the eligibility meeting is set up. So far my child has had a 504 Accomodations Plan, but I truly think that this is not enough. My child is still ambulatory but falls often, has a pronounced Gowers, does not run nor jump, participates in P.E. the best he can. I really think that our boys are intelligent but their academic performance is something different that can be improved by implementing an individual education plan for them. What are the goals we have to consider for the IEP? I need your valuable advice. Thanks and be assured, we are all on the same boat. Take care, Isabel
Isabel,
(This is long-sorry.) I agree with you and think that you are definitely on the right track with your son. Do you know which evals will be done? Every child is different, but there are definitely many characteristics that are known-through research to be common components of Duchenne as it relates to learning. Reading your description of some of your son's challenges is not surprising to me at all. Many of the boys exhibit problems with what's called executive functioning, which impacts not only their ability to stay focused and organized, but it also interferes with their ability to process complex information at one time-which is evident in the frequent problems with mathematical problem solving and reading comprehension. Another huge component that many boys have is short term memory and/or long term retrieval. This is what causes the root problem in math because they struggle with memorizing facts. Dealing with the memory issue, in my opinion, should be a large part of the efforts. So, the math goals may be two part: one is making sure that he gets daily one-on-one instruction in basic math concepts/facts. He will get it, but the effort will need to be intensive to help him. Given that, there also needs to be specific instruction on math processes. So that my son would not fall behind on learning math processes (step by step operations) while he is still mastering the basic facts-I made sure that he was able to utilize aides (such as multiplication tables to solve division problems). Separating the two-memorizing facts and learning processes has helped him immensely...I've seen a lot of growth now. For all areas, reading, math, and writing, I would make sure that he is taught how to use and is allowed to use graphic organizers so that he can better work through concepts step by step in a visual manner. Everything my son brings home, we somehow find a way to break the work into simpler parts through visual representation. Anyway, Elijah's goals include those for PT/OT/APE, math facts, problem solving, writing (typing and the actual process), behavior (focus/attention, accepting help), and social. The goals should be annual, for example, they should state what your son will be able to do a year from now, also specifying 2 or 3 short term objectives that will lead him to that point through the year. Look at the goals and make sure that they are challenging enough to keep the gap between him and his grade level peers closing. If you see a goal that looks like something he can already do, something you know he can do in 1 month, or something that is just way too low, say something. I make sure the team knows that I 1) have high expectations for him given what I know he can do and 2) expect for grade level gaps to be closed, not made larger through the year. I would sit down now, because the evals are going to take awhile, and write down draft goals yourself, so that you'll be ready. Also, when they call the eligibility meeting, make sure that you tell them that you want to look at the evaluation results and schedule another meeting after you have had a chance to process them. If they want to turn the whole thing into an IEP meeting right then and there, let them propose goals, but do not sign off on the IEP yet, set another meeting so you can look at them when you are not under pressure. My last comment is that I think you should provide them with as much research as you can regarding the link between DMD and inattention, verbal processing, memory, and behavior. This will help them to understand that Duchenne is complex and requires more than anything a 504 could provide. I have attached two documents I wrote for the school, one for the eligibility review and the other before meeting for the actual IEP. Feel free to peruse for ideas/research. Hope this helps. If you would like my input when the evals come back or feedback on their proposed offer of services, email me kmajmiller@hotmail.com. Good luck!

Isabel Cubas said:
Hi kari and kelli,

I am so glad I found your posts. I am currently going thru the same issue. I just signed the consent for evaluation of my son, who is 7 yrs. old now and attends second grade at the public elementary sch. in Southeast Florida. He likes to go to school,but he struggles academically in all areas. He is showing some difficulties with math concepts, reading comprehension,problem solving skills. According to the teacher she does not really see any learning disabilities at this point, but more a maturity and interest-concentration-attention issue. I am also confused as to what I would need to concentrate when the eligibility meeting is set up. So far my child has had a 504 Accomodations Plan, but I truly think that this is not enough. My child is still ambulatory but falls often, has a pronounced Gowers, does not run nor jump, participates in P.E. the best he can. I really think that our boys are intelligent but their academic performance is something different that can be improved by implementing an individual education plan for them. What are the goals we have to consider for the IEP? I need your valuable advice. Thanks and be assured, we are all on the same boat. Take care, Isabel
Attachments:
Hi Isabel and Kari,

I just wanted to second what Kelli said about having time to review and process the evalutaions before signing the IEP. My son (1st grade) has had an IEP in place sice kindergarten. When we met so I could sign the consent for his initial evalutaions, I asked to have a copy of the evaluaion results at least three days before the eligibility meeting. I believe there were reports from 5 or 6 areas, and that gave me time to really read them and absorb the information. It's overwhelming to go into a meeting and have all these reports handed to you and be expected to review them on the spot with everyone there. I think it's really essential to make sure you have adequate time to review them on your own before you finalize anything.

Kim
Thanks a bunch Kelli. Your help is great. Will keep you posted!
Isabel

Kelli Miller said:
Isabel,
(This is long-sorry.) I agree with you and think that you are definitely on the right track with your son. Do you know which evals will be done? Every child is different, but there are definitely many characteristics that are known-through research to be common components of Duchenne as it relates to learning. Reading your description of some of your son's challenges is not surprising to me at all. Many of the boys exhibit problems with what's called executive functioning, which impacts not only their ability to stay focused and organized, but it also interferes with their ability to process complex information at one time-which is evident in the frequent problems with mathematical problem solving and reading comprehension. Another huge component that many boys have is short term memory and/or long term retrieval. This is what causes the root problem in math because they struggle with memorizing facts. Dealing with the memory issue, in my opinion, should be a large part of the efforts. So, the math goals may be two part: one is making sure that he gets daily one-on-one instruction in basic math concepts/facts. He will get it, but the effort will need to be intensive to help him. Given that, there also needs to be specific instruction on math processes. So that my son would not fall behind on learning math processes (step by step operations) while he is still mastering the basic facts-I made sure that he was able to utilize aides (such as multiplication tables to solve division problems). Separating the two-memorizing facts and learning processes has helped him immensely...I've seen a lot of growth now. For all areas, reading, math, and writing, I would make sure that he is taught how to use and is allowed to use graphic organizers so that he can better work through concepts step by step in a visual manner. Everything my son brings home, we somehow find a way to break the work into simpler parts through visual representation. Anyway, Elijah's goals include those for PT/OT/APE, math facts, problem solving, writing (typing and the actual process), behavior (focus/attention, accepting help), and social. The goals should be annual, for example, they should state what your son will be able to do a year from now, also specifying 2 or 3 short term objectives that will lead him to that point through the year. Look at the goals and make sure that they are challenging enough to keep the gap between him and his grade level peers closing. If you see a goal that looks like something he can already do, something you know he can do in 1 month, or something that is just way too low, say something. I make sure the team knows that I 1) have high expectations for him given what I know he can do and 2) expect for grade level gaps to be closed, not made larger through the year. I would sit down now, because the evals are going to take awhile, and write down draft goals yourself, so that you'll be ready. Also, when they call the eligibility meeting, make sure that you tell them that you want to look at the evaluation results and schedule another meeting after you have had a chance to process them. If they want to turn the whole thing into an IEP meeting right then and there, let them propose goals, but do not sign off on the IEP yet, set another meeting so you can look at them when you are not under pressure. My last comment is that I think you should provide them with as much research as you can regarding the link between DMD and inattention, verbal processing, memory, and behavior. This will help them to understand that Duchenne is complex and requires more than anything a 504 could provide. I have attached two documents I wrote for the school, one for the eligibility review and the other before meeting for the actual IEP. Feel free to peruse for ideas/research. Hope this helps. If you would like my input when the evals come back or feedback on their proposed offer of services, email me kmajmiller@hotmail.com. Good luck!

Isabel Cubas said:
Hi kari and kelli,

I am so glad I found your posts. I am currently going thru the same issue. I just signed the consent for evaluation of my son, who is 7 yrs. old now and attends second grade at the public elementary sch. in Southeast Florida. He likes to go to school,but he struggles academically in all areas. He is showing some difficulties with math concepts, reading comprehension,problem solving skills. According to the teacher she does not really see any learning disabilities at this point, but more a maturity and interest-concentration-attention issue. I am also confused as to what I would need to concentrate when the eligibility meeting is set up. So far my child has had a 504 Accomodations Plan, but I truly think that this is not enough. My child is still ambulatory but falls often, has a pronounced Gowers, does not run nor jump, participates in P.E. the best he can. I really think that our boys are intelligent but their academic performance is something different that can be improved by implementing an individual education plan for them. What are the goals we have to consider for the IEP? I need your valuable advice. Thanks and be assured, we are all on the same boat. Take care, Isabel
Hello, Kelli and everyone else in this discussion,
How are you and your love ones as we are heading into the weekend?
You did a excellent job explaining this Kelli! re: the reading and math etc..

Cheryl
Hi,
I started to help write IEP goals for my younger son when he was in 3rd grade...that's when he had his first tendon release surgery. I wanted to be sure the school was helping him develop skills he would need later when his physical skills changed. I wanted him to have the opportunity to develop word processing skills, and the principal wanted a computer lab for the school. We worked together... the principal was able to access additional funds for the project, since it was part of the IEP; my son got to use the computer lab when it was completed and it was also wheelchair accessible. The school also remodeled the bathrooms so they also were wheelchair accessible (bigger stall so attendant could fit and door could still close, sink in the stall.) I researched area school districts when we received the DMD diagnosis. The district where we were living was totally inadequate for meeting needs of children with physical disabilities, still providing the cognitive challenge he needed. We moved to this community. (The middle school and high school were already adequately accessible.) I volunteered in the classroom once a week; I worked on Saturday, so I could have Fri off. I was on the PFA board; I was visible...I wanted to get to know people because I really didn't know exactly what my son's needs would be later. So started my "career" in advocacy!! But it worked...

Laurie

Examples of IEP Goals (Each district may write IEP goals a little differently, but I hope this gives you an idea.)

Fine Motor: Brian will develop word processing skills locating 10 keys with 80% accuracy. (This could also be a Cognitive skill.)
Cognitive: Brian will type a complete sentence using at least 6 words with...
Social: Brian will increase social skills working cooperatively with another student to plan a class project...

If you know your child needs help with something, take a list to the meeting; sometimes you can talk to the teacher informally before the IEP gets started. Oh, also, I knew it didn't benefit his electric wheelchair do laps around the track during Adaptive PE; the wheelchair didn't need the extra wear, tear and dirt in the gears. We were able to modify this so he got to spend more time in the Library/Computer Lab doing Creative Writing; much more challenging for him. The note from the Dr. after surgery waived the PE requirement for graduation.

P.S. My son's thought I was mean, but I insisted they enroll in at least one class for summer school just before they transferred to the next school. I wanted to be sure they knew some of the kids, some of the teachers and where important things were located: the most accessible bathroom, the most level routes to take between classes and offices.

PPS. I hope this didn't jump around too much. Word processing assignments can help kids be more successful if they have learning disabilities. (Yes, I'm a teacher.) Hope this helps.

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