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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I haven't had an issue like this yet. We got lucky with our principal though. His cousin passed from Duchenne so he knows the disease somewhat and every time we have an IEP meeting, he the first in line. What I did though, was made an appointment with him and the resource worker at the beginning of the year and explained what was going to happen. I also ordered PPMD education matters booklet for the school. They sent 2 of them to me. One for me and one for the school so that if there is an issue, they can look it up quickly and if needed they can call me and we both are looking at the same thing. I ordered it from Ryan Fischer. It is fabulous package that they send you. It comes with 2 DVDs, a book, the booklets which include a portion for parents, teachers, and phys ed.. Joshua's teacher watched the DVDs while the kids were out for recess and Joshua said she had tears in her eyes when he came into the classroom. We used to get the odd note home explaining what went on that day (not a complaint), but she hasn't since.

I'd set up a meeting with the principal and take whomever you can with you. Seph isn't going to get the education he needs or can understand until the teacher and principal can understand what he can.

Naomi
I had a same incident not at school but with a neurologist at DUpoint where he suspected something wrong with his muscles,he seat down with us and start Q & A with my son,since my son was going to the 2nd grade,the Dr gave him Q about 1st grade but sometimes he didn't know the A.In the end he said to us that he don't belong to the 2nd grade after a quick test,and he said that next to everybody[me,wife,son & dauther] now tell me wich kind of a NEUROLOGIST IS HE!!!?
He should know better than anybody,because he was suspecting a muscular dystrophy...
Lori
When we had problems with the school my husband would go over their head. He would speak to the head of the board of ed. It worked well. I understand your frustration. Also when my son was younger he had cognitive problems so we got him speech therapy. It worked wonders. Also since he had trouble reading in kindergarten I didnt teach him to read by sounding out. I taught him by memorizing. He is 16 now and is extremely intelligent.

Michelle
Sounds like your instincts tell you this guy is not taking Seph's DMD seriously. Maybe it would be a good idea to host a viewing of the Darius Goes West at the school? Since they don't see the more pronounced DMD issues now since Seph seems so normal in every other way, maybe it would be good idea to get a bit more insistent on making them view the realities of the later stages of DMD.

Of course, the primary goal is to get them to treat Seph as normally as possible while also trying to understand that issues will arise where he is not at the same level as his peers. If the principal is not taking you seriously and a frank conversation with him still does no good, then I like Michelle's suggestion below. Go over his head and talk to the district board. Maybe get some strong arms from the PTO.

And if those still do not work, get your local news station involved - LOL, this will REALLY get their attention! Headline: "Principal does not care about his special needs students. Should we care about him?" Sorry, that may be an extreme but it kind of makes me chuckle that someone so insensitive as this principal seems to be may need a lesson in humility.

Liisa
I would give him the education matters book and then say "I would like to set an meeting with just you to discuss specific issues, please let me know when you have read it and we can meet. Thank you very much for taking this time for Seph."
I have taken the Education Matters book to them. I am sure he didn't read it. I tried to talk to him early in the year and even asked for an IEP before school was out last year...he refused me (violation of law #1). I could talk to the president of the school board, I grew up with his daughters...could walk into his house at any time :) . Certainly an ace in my pocket! I have decided that he thinks I am just making excuses for Seph and useing his 'physical' disability as an excuse for everything. Does anyone have a research paper on the reading issue???

Thanks for your thoughts!!! Lori

OH, yeah, Darius is coming to our town for a viewing on April 24! I will definetly try to get him there, but I can't drag him!!!
He was out of place, LAUGHING was very unprofessional....it should have been your son's teacher that approached you re: your son being behind with his words, I would report his behavior to the your state education board....I had to do this to our High School Principal when we had a problem with his attitude on Adam's first day of High School after a student kept shutting Adam's chair off when the students were going between classes....he said don't think you'll be running in here everytime there is a problem with Adam....I said a student shutting Adam's chair off between getting to classes was like someone coming up behind a able body person and hitting them from behind at knee level with a stcik or bat and they could damage Adam's chair.....I told him I was going home right then and report that discussion to the state school board and he changed his attitude and said Ms MacDonald here sit down and we'll talk....I said no and left....parents of healthy children are nervous on their child's first day of HS...imagine how we feel when our boys start HS. Our prayers were answered as this principal took a principal job at another school in another district and a awesome man took his place as the new principal at Adam's HS and was sincere with trying to help us with any issues that may have arose with Adam and his needs during his 4 yrs. in HS.

Good luck with whatever you decide you need to do to make this man understand your son's needs on a educational level, physical level and emotional level,
Cheryl
I solely agree with what Lisa said, sometimes we do need to go that extra mile to educate the public and what better way than the media....news station or newspaper. People won't know until we make a broad stance with people such as the principal at your son's school.....he may not only be doing this to your son, he may also be treating all special needs students the same way. Notice some replies said to give him the Education Matters books to him and I thought I bet she already has and I bet he won't read them. So, just go over his head.....skip the middle men go to the top! Also, you can have your son's MD clinic Dr.'s go and speak with him and they can also be present at IEP meetings....Adam's Dr.'s always offered to do this for us, but we never had the need for them to do so.

Good luck,
Cheryl


Good luck,
Cheryl
http://www.columbia.edu:80/cu/md/index_files/Page551.htm

Here is a good link to information Lori. The PPUK Toolkit is an excellent source and has a link in the above article. I would give them as much info as possible. Good Luck!
Karen
Karen, that was just what I needed! Thanks!

Karen Barnett said:
http://www.columbia.edu:80/cu/md/index_files/Page551.htm

Here is a good link to information Lori. The PPUK Toolkit is an excellent source and has a link in the above article. I would give them as much info as possible. Good Luck!
Karen
This may not be particularly helpful as far as improving the school your son is currently in, but there are some other alternatives to possibly consider.

One, changing schools. I attended a school with a toxic principal as a kid. If attempts to reform him produce less than is desired, moving on can be the best thing for an individual child.

Where I live now we have a "school of choice" system where kids can easily change among a variety of public schools with different philosophies (and staff). There are also charter schools, private schools and homeschooling ... these, of course, have fewer services for kids on IEPs. Tough choices but choices nonetheless.

Two, a different philosophy. Looking at the info Karen sent (Thank you!), it seems like the speech/language delay can be worked with by using a different approach than our typical public school system uses. I like the Waldorf approach. Their style of reading/language instruction uses lots of media (story telling, drawing, singing, dancing, recitation, etc.) to teach these skills. And they do it at a later age. There are lots of homeschooling resources out there which could be used as a supplement or substitute for public school. And there are lots of Waldorf schools out there ... they're just mostly private and therefore not cheap ....

Good luck. I would love to hear about how things go for you, Lori.

Interestingly, it is our daughter (a carrier) who is showing these very language symptoms at age 4. We're pretty lucky in that we think we've found a school that could be great-- Waldorf methods, public school of choice, aware and individualized IEP programs, caring and intelligent staff-- it's just in a different city an hour's drive away. We're serisously considering moving.
Ivy
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

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