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Permalink Reply by Cheryl Markey on February 11, 2009 at 1:59am

Hey, ladies!
I know my son is already graduated from school and I was just on here checking discussions in every area, and I dealt with the same things you all have been talking about on here. Now, here is a thought to ponder about.....here my son is 23 yrs. old, he graduated HS is 2004, I had the same problems with the school in some of these issues that bother you, so, here it is how many yrs. since my son was where your boys are today.....I wonder just when the world will ever really get it......what our boys need to succeed in their school years! I know I did the same as you all are doing, have done and still are trying to do to educate the educators of our children. Even giving each teacher the copy of the manuel you all are talking about and even other materials, I have gone so far as to tell them I am giving you all a Homework Assignment this time and that is to read the manuel and material I have shared with each of you.....some i know read it and others didn't....you have the individuals that really care and the ones that don't!!!!

I many of times just wondered if some feel that after we tell them our sons DX and what it means, that some school systems, just figure why put so, much into a child that may not make it to his adult yrs., he will never use the skills he will be taught, that some just don't want to put the effort, into our boys!!!! Because there have been many boys ahead of your boys that have had the same issues as your sons do in school, and even boys that were ahead of my son in school who also had DMD, their parents and I know I did, did exactly as you all are doing today....so, why hasn't it clicked it.....it should be drilled into their thick skulls by now, but, for some reason what we parents down the thru the years are telling them, and still telling them isn't getting thru. It should be well known by now, what DMD boys will need from a aide to adapted devices to help them in their daily routines in school????? Just sit back and ponder about what I just wrote and asked!
Why, haven't they gotten it yet, it's not like your son is the first case of DMD to attend a school here in the US!
A friend here also has a DMD boy, and luckily we paved the way for him thru his school yrs., as I made sure each grade knew that once Adam graduated that grade, that there will be abother boy right behind him with the same needs!!!!!

God Bless each of you,
Cheryl

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Permalink Reply by Joshua's mom on February 11, 2009 at 12:01pm

If there is anyone from Canada looking for a similar book on this side of the border, I just called the MDAC at 1-800-366-8166 and they have books similar to this for schools as well.

Naomi

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Permalink Reply by Kelli May on February 11, 2009 at 1:53pm

Concerning the evals he had done, at the age that he had them completed, I think it is difficult to say what he would be struggling with down the road, academically...but, there should have been at least some indication if he was having trouble processing age appropriate information given to him visually or verbally and if he may have difficulty down the line with phonemic and phonetic awareness. If there was an indication at that time, that would explain any problems he may be having in reading-fluency and comprehension difficulties are common with DMD, as well as mathematical processing and memorization. Did he show any short term/working memory deficits? Trouble focusing/attending to task? Has the psychologist observed him in the classroom frequently? Does the teacher keep good records of specific issues that he is having in the classroom, as it relates to executive function skills-behavior inhibition, self regulation, reading and following social cues, task completion-and academics? What exact concerns do you have for Sam, academically and behaviorally? The results from the evaluations and observational notes should guide the goals that the team makes for him, as well as determine his need for paraprofessional support and other related/supplementary services and supports.Basically, if he has shown difficulty with executive function skills, I believe that you could justify the paraprofessional in combination with safety and access reasons related to his DMD diagnosis. Anyway, here is an example of a LA goal. It first states his current functioning, and then follows with a related goal to help bridge the gap. Goals are written for annual progress monitoring, so you have to consider that. The example assumes that he is more than a grade level behind and you want to bring him up to grade level. It's kind of rushed-I have to go right now, but I can give you more examples if you email me kmajmiller@hotmail.com.

Baseline/Current Level: Given kindergarten level text, Sam is able to recall and state/draw 1 event in 2 of 5 trials during one week as measured by daily informal quizzes/assignments.

Annual Goal: Given grade appropriate text, Sam will be able to recall and state/draw 3 events in correct sequence in 4 of 5 trials during one week as measured by daily informal quizzes/assignments.

You want to look through all the evals, informal tests, observations, and what you know about Sam and develop one or more goals for each area that you believe he struggles, including behavioral, physical, and all academic areas. One last thing, if you feel that he needs more detailed evals at this point to give you more information, I would suggest getting an independent educ. eval done by a private neuropsych and request the school reimburse (or just do it yourself).

Hope this helps at least a little!

Kelli
Laurie Paschal said:

He's in 1st grade. He's had an IEP since he entered the school system at age 3. That was in Ohio. We moved back to Texas before the start of Kindergarten. He did receive a full evaluation through the school at that time. Right now, there's not much there with regards to LA, or any other classes. He has that he gets extra time, and can have assistance with written work when needed. Besides the testing accommodations, what other goals would you suggest, at least as a starting point for us to look at?

Kelli Miller said:

Laurie,
What grade is Sam in? I'm assuming he had a full evaluation last year before that ARD meeting? What is in his IEP now? Are there specific interventions to help him progress in LA? Concerning the meeting, make sure you document what happened...and then write a letter requesting a meeting without undue delay. I really don't understand why, after the meeting, whatever it was called, that included you, a school administrator, classroom teacher, and resource teacher, the testing accomodation couldn't be added to the IEP. As long as you consent to the diagn. to be excused, it should've been ok. Going back though, there needs to be specific goals/ interventions to help him progress in LA, rather than just testing accomodations.

Kelli Miller
Educational Consultant/Advocate, CA

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