I dropped Seph off at school this morning and the Principal came out to the car. He told me that he was reviewing words with his class (Kindergarten) and Seph is having trouble with his words. "his recall is not where it should be". I told him that yes, I was aware of that, that it is a typical Duchenne trait (as he was handing me flash cards with the words on it). He LAUGHED.
Now this man has done nothing to educate himself on DMD, he did not sit in on the IEP except to come in for a brief moment, made a stupid comment to which I corrected him and left it at that.

I KNOW that Seph's reading is not where I would like it to be...part of this is DMD, part of it is that his sisters were not good readers in Kindergarten (the oldest has been reading on college level since she was 11...now 14!). My kids catch up and we know that DMD boys without cognitive issues catch up.

So, what would you do? Would you talk to the principal? send an email thanking him for his concern and try to educate him some? Not worry about it???????

I am pretty frustrated with him, but am not really at the school as a whole...just him and his interaction with Seph is limited.

I would love to hear your thoughts!
Thanks!
Lori

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Lori,
Does Seph get any one on one instruction during his day at school?
No. He is pulled out some for a small group in reading instruction, but that is it and it is not daily. The classroom he is in is not very structured and this same principal refused to move him to the other one that MAY be a little bit more. I am going to add that to his next IEP. I was going to put it in now in prep for next year, but the Sp. Ed teacher (who I trust) told me that both 1st grade teachers are VERY structured...so that is good. But it will be written in next years IEP so that down the road I will have leverage to get him in the right room.

Karen Barnett said:
Lori,
Does Seph get any one on one instruction during his day at school?
Being new to this whole DMD thing (diagnosed this past summer) and with our son showing very mild signs, we still had a meeting with the school principal, phys ed teacher, occupational therapist, physical therapist, and kindergarten teacher at the beginning of the year. "Fortunately" - i guess - our school had a child with DMD go through the system quite a few years ago, so many of the long timers know what is going on. With Kyle being so mild, it was really hard to discuss what they needed to be aware of, but I did leave them the books that were referred to above. We are not on an IEP at this point. His kindergarten teacher is wonderful and Kyle does have some reading issues - nothing major at all and quite honestly i think it's because he's the baby of the family and is alittle immature. I feel fortunate to not have run in to the issues raised here and pray that I won't in the future. Being a school board member as well (was elected pre-diagnosis), I would suggest going to your school board if the normal chain of command gets you no where.

Good luck to you.. Donna
Even before Daniel started school I knew he had learning disabilities as well as other cognitive issues. The school evaluation, done right after he was diagnosed and had just turned 5, revealed only speech and some gross motor delays. These short 1 hr evaluations in a little room cannot possible pick up everything and with DMD these issues (especially cognitive) can be more subtle. Daniel was offered no other help going into kindergarten besides speech on his IEP. I gave them tons of information on the learning delays and cognitive issues that boys with DMD can have and I KNEW he had. They told me that I didn't know that he had any of those problems (huh? I don't know my own son?). Fearing he would fall quickly behind and get totally frustrated with school and hate it, I urged them to give him some one on one help and even OT for the sensory issues. They would not. They had to see it for themselves. Unfortunatly, just what I feared would happen happened. He was lost, didn't understand any of the instruction and quickly grew frustrated with school. I had to practically drag him there. It didn't take long before he really started acting out - running and hiding, destroying the rooms, etc. I was getting called on an almost daily basis to come and get him. Anyway, they finally saw it but it took a while for them to act on it and it completely turned the start of his school experience into a terrible one. Knowing he would struggle, I really wanted it to start out so much differently (more help) and it be a pleasant beginning. Had they done more from the beginning I think it could have been. I argued with them, gave them tons of information but to no avail. If I had to do it over again I would have pushed harder. It caused Daniel months of frustration that were needless. It helped a lot to get a neuropsych done, although they said they didn't have to listen to it. It carried a lot of weight and they knew everything the psychologist had on there was right on after witnessing it themselves. I was hoping he could stay in general ed with the one on one help he needed everyday (which he never got), but it was clear his learning disabilities and sensory issues were just too extensive for general ed. I had to put him in the resource room (or special education room). It's a small class size of only about 6 and constant one on one help with an aide or the teacher. This has worked much better for Daniel although he is still really struggling academically. He struggles with frustration at times but it is so much better than before. The smaller class size with less stimuli and noise is much better for the sensory issues.

I do think if you suspect learning delays in reading/math etc. teachers/principles need to listen more to the parents, read the problems that DMD boys can have and get them that one on one help immediately. They need to do this before they become too frustrated and fall too far behind. We followed in the steps of another DMD boy that did not have the significant delays that Daniel has so it did not help our case.

Anyway, this has been some of our experience so far. I think Seph would really benefit from that one on one help and given that he is struggling more in reading and the problems boys with DMD can have with reading, he should get it now.

Karen
I will definately bring them this info. Loos like it helped Seph out alot. One thing a mother of a 16 yr old boy here in Houston told me the other day was to get a private tutor if we start to see struggles in academics. Nicholas does so much better with one to one instruction. I am sure Seph will catch up. I hope the boy in SEph' s class backs off. Good Luck!

Lori Ware said:
Thanks for everyones responses. Ivy, just so you know, if a child has an IEP, the parent basically can also choose the school that child goes to. I am considering that.
On the principal issue, I decided that he thought I was just a mom making excuses for her son (yeah right, I am a Sp. Ed teacher myself...) anyway, I decided that was what his inappropriate laughter was about. So, this morning I sent him a very nice note (cursing him in my head) and attached the document that Karen linked.
He responded pretty quickly and said Thank you for the information, he was not aware of the cognitive issues and that certainly explains what is going on with Seph. He then asked if we wanted to hold him back in kindergarten. I said no, he actually is 7 today and we already held him back in pre-k and we know this problem resolves itself normally around the age of 8.
all of this allowed me to ask him about a particular kid in Seph's class who seems to be bullying Seph since Seph is weaker. I told him of a couple of instances, one of which the teacher felt was intentional and calculated and the principal said he would be sure to talk to this child and help him understand some serious consequences if he continues with the behavior, especially targeting Seph.

So, right now, it is ok...we will see from here on out!!!
Thanks again!
Lori
Hi

Veronica Hinton, a neuropsych at Columbia, has been doing cognitive research on DMD guys for about 10 years. Look at her stuff. Our school district also had a boy with dmd go through the system about 12 years before our son. I asked the staff to forget about that experience because our boys are so different. The older student had significant cognitive delays and my son is taking classes for college entrance. We had to underline the need to expect excellence in academic performance, rather than expect the least. I think building relationships with teachers and administrators pays off in spades. Therefore I am hesitant to jump levels (until other avenues are not working) or raise a fuss. I work hard at staying in touch, sharing information and telling them my concerns and listening. So far we have had an excellent experience at a rural school district. To be honest, it probably doesn't hurt that we are related to half the school board and went to school with the other half. Hang in there.
Lori,
Boy I would make a meeting with the principal and I would read him the cognitive issues. I would tell him as principal, he needs to educate himself and have the teachers follow. It is just too easy for others to judge our DMD boys as lazy or mentally challenged.
I have given our son's teachers tons of info to read and I don't think she has read it either. It makes me mad. Just because the teacher is a special education teacher, does not mean they know everything. DMD is a rare disease so most likely they don't know about it. And, another thing, they could at least show some empathy as well. Maybe you could give him that Faces of DMD DVD that PPMD produced. Maybe you could go to school and give a one or two hour conference on DMD. You could show the DVDs, have other parents talk at it. You could even include some of the other schools - in it. Maybe you could do this and charge people for coming and make some money. Maybe you could get Dr. Victoria Hinton to teleconference into the session.
Seph is such a great boy. He is very bright and so what that he can't recall some of the site words. He is smart and such a brave one too!
Lori - you are a great mom and I admire you so much.
You will do what's right for Seph - you always do.
Your friend,
Char Burke
I'd thump the **** for laughing at a very serious issue for your son. I think he needs some information on the disease, is there a consultant/doctor who could contact him, if he thinks laughing at parents is a good idea.
Thanks Ian,
I would have liked to 'thump' him!!! i did get him some info and he was very respective to it...surprisingly! He is an idiot, no doubt and the fact that my son has DMD AND I am a Special Ed teacher threatens him (I know the law from 2 perspectives!). AND...there are no doctors in my town or even STATE that could talk to him about DMD...they, even the MDA doc knows WAY less than I do!!!

I really appreciate your input. I see that you are a man with DMD. How old are you? THanks! Lori

Ian Anthony Griffiths said:
I'd thump the **** for laughing at a very serious issue for your son. I think he needs some information on the disease, is there a consultant/doctor who could contact him, if he thinks laughing at parents is a good idea.
Hi Lori, i'm glad he was receptive to the info, I hope he grows up! I know Dr's don't know much, we have to be the experts.

I'm 24 hun. My cardiac nurse doesn't even know about my DMD, she asks lots of q's which is good, but they should do their homework.

Hope your well. Ian

Lori Ware said:
Thanks Ian,
I would have liked to 'thump' him!!! i did get him some info and he was very respective to it...surprisingly! He is an idiot, no doubt and the fact that my son has DMD AND I am a Special Ed teacher threatens him (I know the law from 2 perspectives!). AND...there are no doctors in my town or even STATE that could talk to him about DMD...they, even the MDA doc knows WAY less than I do!!!

I really appreciate your input. I see that you are a man with DMD. How old are you? THanks! Lori

Ian Anthony Griffiths said:
I'd thump the **** for laughing at a very serious issue for your son. I think he needs some information on the disease, is there a consultant/doctor who could contact him, if he thinks laughing at parents is a good idea.
I had the same issues at school. I asked for one of our monthly Supported Education meetings be cleared for me to educate the team on DMD. They were willing & I was able. I contacted both PPMD & MDA for materials & handed them out at the meeting. They all thanked me afterwards. Things have really changed since this meeting. My son was constantly being labeled as "stubborn" and "uncooperative", after I explained that it took him longer to process things (this is also from DMD) they are treating him differently (in a good way). I plan to do this same meeting at the beginning of every school year from now on. It really helped a lot.
I also should mention that MDA has people willing to go to the school to explain DMD to the team. I found out about this after I did my own presentation.

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