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school meeting was not what I hoped for! #35849 04/27/06 01:29 PM
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chattermouth73 Offline OP
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Hi everyone! The meeting I had at my sons school was not at all what I had thought it would be, I was expecting all of his teachers to be there and not all were there. the ones who were there were not there all at once so I had to keep repeating the story several times while teaches came and left! It went OK I guess, there were some understanding teachers and some who were not so understanding. I basicaly learned that at this level of education (7th grade) Kids are pushed to do things much more indepentantly. Parents are not allowed "in" as much. I must say I did walk away with a little bit of understanding myself that my son has to be more of an advocate for himself. All teachers were in agreement that when he is in school he does very well and the reason for his down fall was his absences a month and a half ago when he hit a flare HARD!
He is SO shy that he is afraid to approach some of the teachers for his back work, His afternoon teachers all noticed that by the end of the day he seems like he is in pain and almost lathargic(sp), Im sure that is due to the meds wearing off at that point and after sitting for so many hrs.
I wish there was more I could do for him! One teacher said " it is so unfortunate that Anthony has to deal with what he is but......you cant change what is happening he himself has to learn how to fight the fight and dance the dance, and he will be stronger in the long run for it!" I agree with this statement but as a Mom....what a hard thing to do...I want to help him! I dont want him to have to work so much harder than the other kids just to do well in school. What do you think guys.....back off a little and make him deal with these struggles? is this just what he has to do?
I did accomplish having all of the teachers send home a weekly note so I can see how he is progressing or where he is falling behind, I know that will help. the 504 plan Im working to get him on takes a long time, he will not have that to help him untill next year.
Thanks for listening!


Me and my kids, Anthony is 14 diagnosed with AS but now docs are undecided as to what he has!
Re: school meeting was not what I hoped for! #35850 04/27/06 01:59 PM
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mont974x4 Offline
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It's encouraging that the lines of communication are opened. Have you thought about homeschooling?


Jay

NOTE: If you aint here to help row the boat then you are welcome to walk the plank.
Re: school meeting was not what I hoped for! #35851 04/27/06 02:20 PM
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You have hit my hot button. This is exacatly the age my son was when he first became ill. Have you inquired about Section 504 accomodations. THe school is LEGALLY REQUIRED to provide them for children with disabilities. Go to the school and ask who is the administrator of the 504s and demand that they do the right thing. If you have questions, you can e-mail me at rabbjbmom@optonline.net. I've been there. I have two children with spondy and they both had 504 accomodations which are designed to allow them to do the best they can possibly do on as equal a playing field as children without these disabilities. IT is a federal law. Your child has rights and you must be his advocate. I don't buy what these teachers are saying. You have a right and your child has a right to demand your child's legal rights.

Re: school meeting was not what I hoped for! #35852 04/27/06 02:30 PM
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Heather,

I'm so sorry for what happened. I was sort of afraid of that outcome. My friend teaches special ed students at a Cleveland high school. It never ceases to amaze me what can go wrong. On her end, though, it's seems to be the majority of parents who do not push and/or participate.

She also has a son with special needs/disabilities who is in the 1st grade and she has to continually push and fight to get what he is entitled to. He even has a 504 and still she has to keep on them. It's a never ending battle. Some school districts just don't want to deal with it, but they are legally required to. And since she knows first hand what they are required to do, she doesn't let them get away with anything. I'm sure they're already tired of her, but she doesn't care.

I agree with what Rabb said. The school is LEGALLY obligated to provide your son with accommodations to level the playing field. While he may need to step up his involvement, THEY must also LEGALLY step up theirs. Do not go quietly 7th grade MAY be when students are expected to pull more of their own weight, but 6,7 and 8th grade is the time when they can also fall behind or out. Don't quit!

Best of luck,
Crystal




My opinion is strictly that, mine. However, if I want your opinion, I'll give it to you. ;-)
Re: school meeting was not what I hoped for! #35853 04/27/06 02:56 PM
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I second what Jay said. I don't necessarily agree with the "Fight Harder" idea, I think "Fight Smarter" is better. Homeschooling was the answer for me (I have 4 daughters aged 11-5). We were having problems with school, not because of AS but because of some other things and we were getting no where with the school district. I finally decided this was ridiculous and that I could provide a better environment for my kids to learn in. I was very surprised at all that is available for homeschooling, my kids have an awesome opportunity available that many public school teachers would love to give their students but they don't have time because they are so tied up with teaching state standards theres no opportunity. I'd be happy to discuss it with you if you ever think this might be a choice you'd make. And don't worry about "socialization", my kids are around other kids every day of the week either in sports or with homeschool group activities or with church group or study groups etc.

My husband thinks you need to get a lawyer. Have him send a letter or go with you to your next meeting. He's says you can find them that will do pro bono work (aclu and legal aid types). He says "know your rights!!" and demand them.

You are your childs best advocate!


No I am not a doctor, I only play one on the internet. Seriously, I'm only as reliable as your next door neighbor. My views are not necessarily the views of SAA or its' members.
Re: school meeting was not what I hoped for! #35854 04/27/06 03:04 PM
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Hi Heather,

While I agree with the others, I do think that Anthony is going to have to learn to deal with this sort of thing. Certainly, giving him a 'free pass' won't help him. At the same time, he has to be allowed a certain leeway, due to this darn disease.
I definitely think that pursuing the 504 as you are doing is a good idea, especially if his condition worsens.
I don't feel right giving advice when I am not in the same position as you and the others are, but (LOL) I think if it were me, I would say to Anthony "Do your very best". (I'm sure he does anyway). If his best isn't good enough, too damn bad. What more can you ask? The only other thing you can do, is what you've done which is to stay in touch with his teachers and help Anthony to communicate with them.
That's my .02!
I do hope everything turns out ok,
Char

Re: school meeting was not what I hoped for! #35855 04/27/06 03:48 PM
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Hmmm,

My hot button is hit myself. Fight harder means having the "energy" to fight harder.
Energy requires not being in pain all day and getting adequate sleep and nutrition.

If he is in pain all day then of course he's going to be lethargic. Nobody can study when pain is a constant. Your energy is used up and focus is out the window as it requires energy. There is no fight the fight harder for him if he was making good grades before the AS and his absences are from pain of AS. The fight is to get rid of his pain so he can concentrate. The fight belongs to those around him to make him comfortable to learn. The proactiveness is much more on the part of the people around him to "understand" and address the pain and tiredness issues for him.

Is he getting adequate sleep or is he laying in bed awake because of pain? If you take out the factors that are causing his absences then its on him but if the reason is pain and tiredness then its not on him and should be addressed by the people around him.

I'm fairly passionate about making sure that somebody with what he has is getting a fair shake by people around him. At the same time he doesn't get a free ride if he's using his AS as a crutch to miss school when he feels fine smile

Of course my opinion is just that. An opinion.

Tim

Re: school meeting was not what I hoped for! #35856 04/27/06 09:54 PM
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friendnky Offline
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Hi Heather. Here's an article about a 14 year old boy who is battling with AS that I found via the "Ankylose This!" blog. I thought you might find it interesting.


http://www.pioneerlocal.com/cgi-bin/ppo-story/sports/current/ba/04-27-06-904463.html


Shane


Shane
36 male
Ankylosing Spondylitis in 2000
HLA-B27 neg.
Re: school meeting was not what I hoped for! #35857 04/27/06 10:16 PM
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rabbjbmom Offline
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Tim,
I can honestly say I am very glad you were never my children's teachers.

Re: school meeting was not what I hoped for! #35858 04/27/06 10:27 PM
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Charlie Offline
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Fight, struggle and scrap every step of the way sometimes, isn't it? First the battle with your body, and then the battle with some of the people around you who are less than cooperative.

I am disappointed with the teachers, though some of what they say might be right. Then again, I AM a teacher (not kids) and do understand what a stressful job it is and how catering for everyone's individual needs can be difficult.

It also occurred to me what a hard time I would have these days if I were to go to school 5 days a week. To be honest, I wouldn't manage to sit for as long as your son does. I would never manage 5 whole days in a row. Perhaps afternoons only? Even so, would have to have plenty of opportunity to get up and walk around. No wonder he looks tired at the end of the day, poor lamb! frown I am sure such a routine would slaughter me! Given he has many of the same problems as older AS'ers, I'm astonished he ever manages it.

I don't know what the answer is, apart from to keep plugging away at the teachers. And do what the other moms have suggested with the section thing. I am in the UK and have no advice since the system is different.

On a side note, I've been thinking of doing a PhD in e-learning and developing home-schooling software. I never liked school, though I was a bright kid - reading was my thing. Reading this has made me all the more determined to pursue it, because I can see there is a need. It would be nice to do something worthwhile like that.

Well, really rambled there, sorry. I hope you make some progress and also that Anthony learns to speak up for himself a little more. The squeaky wheel gets the grease, etc. Good luck!





37, Female, Psoriatic Spondylitis
www.charliefoulkes.com
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