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Message started by sandy on May 6th, 2004 at 8:20am

Title: I NEED HELP PLEASE
Post by sandy on May 6th, 2004 at 8:20am
hi every one i just wanted to ask a few questions i really hope that some one eles has dealt with the same problems because i cant get any answers from any dr. you already know 3 of the kids have mm well jake had the surgery but he had several large strokes before his surgery, well he is mobile now but has a lot of weakness on his right side and he cant eat solid food and he cant talk well he has extremely volient out burst we have been to neuroligst they have tried meds that didnt work we went to psy and they said the only thing they could determine was he was fustrated because he could not put his point across and he is beeing taught sign language but he cant use his hands so we tried switch devices but to me he seems like his cognitive skills are poor because he doesnt respone to the right switch at all times. and this morning the teacher sent me a note and this is what it says. Jacob had a bad day he kept hitting people all day when it was time to go out side he hit another classmate in the face and spent play time in time out. nothing seems to work to make things any better.do you have any ideas. we go through this almost every other week, does any one have any suggestions? please help cause they are treating me telling me if i cant do any thing that he will need to be put in a home so that he doesnt hurt anyone, well i just cant see putting him in a home cause he is my baby, i agree he is hard to deal with but God gave him to me for a reason so there has to be a way.please give me some suggestions.  THANK YOU. and GOD BLESS

Title: Re: I NEED HELP PLEASE
Post by Sara on May 6th, 2004 at 9:09am
Hi Sandy:

I am so sorry that you have to go through all that. I am wondering if Jake has any other health problems? I saw you said he has had several large strokes. Is the surgery working? My hope and prayer is that with time he will get those skills back. How long ago did he have the stokes, and surgery, and how old is he?

I think all of these factors play into an answer to your question..

Please keep your chin up. All of us here are fighting for you and thinking of you.

Please feel free to contact me. I was dx with MM when I was 8, 15 years ago. If you want to know what it was like for me, or have any questions, please contact me. I love in Houston.

God Bless You and Your Family!

Sara

Title: Re: I NEED HELP PLEASE
Post by sandy on May 6th, 2004 at 9:16am
sara jake is 6 yrs old he had his first stroke when he was 2mths old and continued to have till he was 8mths when he was dignosed 10 mths when he had surgery and yes the surgery has helped he has not had another stroke since the surgery but he still has seziures real bad but thats because the dr. said a part of the brain was effected so bad that he will have to stay on anti sezuire meds. but he has really come a long way since the surgery. thanks for your support. God Bless

Title: Re: I NEED HELP PLEASE
Post by Sara on May 6th, 2004 at 9:39am
Lets Hope that he will continue improving. Have you gone to the parenting children with MM Yahoo group? I know they have discussions about rehab after stroke. The moms may really help you with some tools to help Jake.  Good Luck!

I have a question... What condition are your other 2 kids with MM in? And how old are they?

God Bless.

Sara

Title: Re: I NEED HELP PLEASE
Post by mg12061 on May 6th, 2004 at 9:54am
Sandy, What type of school is Jake in?Public or private.Legaly it's up to them to help you find out why this behavior is happening.Has the school had a full behavior analysis done by an expert? I will look through my books to find out what the procedures are for this.There is an e-mail group that I belong to I will get you the address.It is a Pediatric Stroke network.Many parents of children who have had strokes.I know many have dealt with this exact issue.Don't forget I'm just a phone call away if you want to talk.........
Mary Grace

Title: Re: I NEED HELP PLEASE
Post by sandy on May 6th, 2004 at 12:50pm
hey sara,
           
        my oldest daughter savannah has never been treated for mm she is severly handicap i have to do every thing for her all she does is smile and laugh she is the happiest baby i have ever seen to have so much wrong with her,and lil sandy has no physical disabilitys she had the surgery very early on, dr. scott monitured her till she was 6mths old cause he said he didnt want to do surgery on her being so young but luckly she didnt have a stroke before surgery, the only complaints she has made is really bad headaches i talked to dr. scott and he said not to worry as far as mm the headaches were very common she takes meds for that and it seems to help. her twin angelica does not have mm how far fetched can that be and she is her twin but i thank god every day she doesnt have it

      hey mary grace,
             
                  jake is in a public school in a special class, we have been through this time after time, i have even called the school board and talked to them about the services he gets there and they said what you said that it is the teachers job to find methods of helping him but my opion is they dont care cause this is a public school just a place to stick these children whose parents dont have means or funds to have them placed in the proper atomsphere were they can be taught what they need.dont mean to sound so harsh. thanks for everyones help and support.

Title: Re: I NEED HELP PLEASE
Post by mg12061 on May 6th, 2004 at 1:08pm
Sandy,  Wow I know exactly how you feel.I have had to fight for Kahtleen every step of the way for proper programing.I spent all of last year fighting to get her out of the self contained room.She is now in Reg. Kindergarden and reading at grade level.She has a special ed teacher who comes to the room for her and a 1-1 aide. There are a lot of things you can do.First know that the law is on your side! You can have an independant evaluation done by a professional of your choice at the schools expense, you can ask for mediation, if your not happy with the school and they can't do what he needs you can have him placed in a private school at the public schools expense,or you can threaten the school with these things and maybe they will get off their buts and do something!I have found it to be a full time job keep my eye on what is going on in school.As I said I will check out the finer points in some of the books I have about the protocol for all of this but don't ever forget that the school is responsible for what ever your child needs!!! This means his physical mental and behaviorial needs, all of these things directly affect his learning.If you want to talk more about this give me a call.Don't appologise for sounding harsh,you have every right.It really makes me angry when i see someone struggling with the school system.Some can be so uncaring.I'll also try and get some web addresses on IDEA laws for you.Hang in there mom your doing an awesome job!!!!
Mary Grace

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