First, I want to start a discussion specifically addressing educational issues that any of us Californians have with our boys. Please discuss what issues you may be having, have had, and what successes you have had with your sons as well. I am especially interested to know 1) how many boys have Individualized Education Programs (IEP) or 504 plans, 2) how many are homeschooled or in private school and 3) how you have dealt with transitions (from preschool to elementary, elem. to middle, middle to high school, high to college.

Secondly, I have recently begun my own educational consulting/advocacy practice in San Diego after having taught and completed a M.Ed in school administration...and I want to let you know that I am offering my advocate services for no charge for Duchenne families. What I provide is a spectrum of services that range from simple consultation, IEP coaching, full evaluation of IEP plans, writing goals, request for new services, meeting attendance, follow up correspondence, education, visiting classes, and making referrals to outside services. Being that my son has Duchenne, I can definitely assist with helping the school to understand what boys with Duchenne need in terms of education. There are many organizations that can provide some assistance for you, but I know in my case, here in SD, the help that is free is not tailored enough to what we actually need! I have attached my card that has a phone number you can reach me at, or you can email me at kmajmiller@hotmail.com (the website/email on the card isn't running yet).

:-)kelli

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Hi Kelli,
Milo has an IEP. He's in 2nd grade in Berkeley Public Schools. We would consider private school but frankly, none of the schools around here are accessible. Contrary to a lot of families, we've had relative success with working out the IEP details. Milo's school principal, teacher, special ed coordinator and PTA are all behind us. The only hitches we've experienced have been on the district level (where $ is always the issue).
I can see how even with an "easy IEP" we could use your services, so I'm sure you'll get a lot of interest in your expertise.
Rebecca
Rebecca,
Sounds like a great situation, that's great! Being that our kids spend the majority of their waking hours in school, it's heartbreaking when they aren't getting what they need. Unfortunately the root of special ed. problems is always $$ mixed with some ignorance! I am interested to know what types of things you have written into your son's IEP? :-)Kelli

Rebecca S. said:
Hi Kelli,
Milo has an IEP. He's in 2nd grade in Berkeley Public Schools. We would consider private school but frankly, none of the schools around here are accessible. Contrary to a lot of families, we've had relative success with working out the IEP details. Milo's school principal, teacher, special ed coordinator and PTA are all behind us. The only hitches we've experienced have been on the district level (where $ is always the issue).
I can see how even with an "easy IEP" we could use your services, so I'm sure you'll get a lot of interest in your expertise.
Rebecca
Let's see. Just off the top of my head: PT and OT (including learning a typing program) at school, some aide time (at critical moments of the day, mostly traveling in the hall), an evacuation chair and training for staff, training for staff on safe pick-up, agreement to allow him to go directly to class in the AM instead of lining up and struggling through busy hallways, double-buddy system on the elevator (one to get a grown-up and one to stay with Milo, in case of emergency), adjustable chair, extra time to complete written work if need be, test accommodations. I think that's all in there, some of it is unwritten.
The hang-up we've had with our district is push-button dooring. Makes me crazy!
Rebecca
The push button dooring is a great idea...I'll have to ask about that at my son's school...right now he has a scooter at school to conserve energy (big campus) and his aide is usually there to open the door for him, or a classmate..but I like the idea of greater independence.

Rebecca S. said:
Let's see. Just off the top of my head: PT and OT (including learning a typing program) at school, some aide time (at critical moments of the day, mostly traveling in the hall), an evacuation chair and training for staff, training for staff on safe pick-up, agreement to allow him to go directly to class in the AM instead of lining up and struggling through busy hallways, double-buddy system on the elevator (one to get a grown-up and one to stay with Milo, in case of emergency), adjustable chair, extra time to complete written work if need be, test accommodations. I think that's all in there, some of it is unwritten.
The hang-up we've had with our district is push-button dooring. Makes me crazy!
Rebecca
I would say definitely APE, and if you can, occupational and/or physical therapy...even having the therapists consult with the teacher on incorporating daily stretches with the whole class is good for kinder. The occupational therapist might also help with a handwriting program that helps him to use his finger muscles more effectively, like Handwriting without Tears. She/he may also be able to provide the teacher with a slant board to write on, pencil grips, and tips for reducing fatigue like writing on plastic sleeves with whiteboard markers, or using whiteboards. All boys are different, but I know my son really didn't have too many considerations for kinder...although his attention span and maturity was less than his peers, but then again he started at 4. Just the fact that you have an IEP that can grow with your son through the years is great!

Rhiannon Hubbard said:
What a great idea Kelli. I think it's grea that you're offering your services like this. =)

Carter is in Pre-K right now, through Head Start with our school district. He has an IEP, but all that's included at this point is Adaptive PE once a week; he was in Speech therapy as well previously, but they took him out of it this school year and we are going to have him re-evaluated for Kindergarten.

I am interested in any tips or things that we need to worry about adding to his IEP for the coming school year since he will be entering Kindergarten in August.
Kelli,

This is such a great service you are offering! I would love to discuss more in detail with you.

Our son is 17 years old now. He attended kindergarten thru 8th grade at a private catholic grade school. He was given an extra set of books for home. He has had IEP's twice now. He has no cognitive problems so he has been given limited resources if any.

Our son now attends a small charter school in Sacramento and is in his 3rd year. He has 9 units of college. The school expects them to have 12 units by the time they graduate from high school (this is a requirement). He has no school aid and has managed to get around by himself at this time. He does not walk.

I am very interested in talking in detail about resources, espcially resources in California.

I have to run. Seems like I have been too busy lately.

Take care,

Julie
HI,

My son just turned 18 and is a senior in High School. Second semester of his 10th grade year we moved him to the independent study program the school district offers. He meets with his independent study teacher 2x a week at on off site location. He gets contracts, does the work and turns it in and takes the end of course exams. He uses the same books and curriculum as the high school. He is not quite on track to graduate this June, but should be hopefully by the end of this year. The one really big hang up to getting his diploma, besides finishing all his classes is the Service Learning requirement, he has to have 40 hours of community service to get that piece of paper. Every time I try to talk to him about it we get in a fight. There are plenty of opportunities, at his independent study site and even at the hospital where he is seen. We have never had a problem with his IEP, they have been really great. Even though they don't allow concurrent enrollment with this program they worked it out so he could finish his APE at the high school. I am just hoping he decides to not finish now that he is 18.

His teachers were all really great and accommodating until he got to high school. The school he attended has a population of about 4,500 students. It was hard to be the kid in the wheelchair in a place as crowded as that. He had a key to the elevator and their response to him having to fight with the 'regular' kids to get on the elevator was to let him out of class even earlier. Since the classrooms were so crowded he really didn't have equal access to the teachers. He is so much happier now and his grades went from c's, d's and f's to a's and b's. He takes just one or two classes at a time, so he doesn't get so tired. He can finish a semester length class in 4 to 8 weeks. Yes he is more isolated now, but he had isolated himself at school anyway, he spent lunch all by himself, he really did not want to let anyone get to know him.

Susan
Kelli I just keep going and everyday I find more of the things I need to help my son Caleb I see this post is over one year but maybe you still help the same thing with IEP I have other children that I know just want is needed but with Calebs dmd Im not sure extra time tirdness but the teachers say he never asks for help he never will that is who he is I will do it myself cried everynight about the homework he is reading at 6.1 grade level just finished 3 grade but nothing is fun now he is just tired math grade very low I know if I knew what to ask for they have to do but Im at a loss. he goes to Jamacha elem very good school but they look on his as normal he still walks falls everyday. lost alot of upper arm strenghth and is left handed as well can not read his printing much now it makes him unhappy because it was a strong point for him.I know there are things that can help just donot know what they are can you help want to start him off for a god 4th grade experience. waiting to hear from you Penny

Hi!

 

If there are any families from southern CA who would like to attend the conference, but can't, please call me or send me a message. As the Parent Outreach Coordinator for Duchenne San Diego (DSD), my goal is to identify as many DMD families in need of connecting in our area as possible, and then make it happen!  We are sponsoring families to attend the conference at no cost, because we believe the conference is THAT valuable. This will be my 7th conference and I have truly benefitted each and every time I come.

 

If you are not from SoCal, please spread the word to any families you know who are. We are going to have to finalize reservations/arrangements very soon.

 

My phone number is 619.446.8617.

 

Thanks!

 

Kelli

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