Hello
Hope all is okay.
Just wondered if there was anyone of simular age to my daughter, she was diagnosed with mm in 1999, she had just gone 1.  She is now 8.
She attends a special needs school, she has left arm weakness and right leg weakness, her leg is quite bad at the moment and she has had to have it in plaster cast, a lot of people i have spoke to seem to have made almost a full recovery, but Chloes weaknesses dont seem to be improving, also she has no speech.  She understands everything though.  Does anyone know of any special help i can get for Chloe.
The school and hospital try thier best but they dont have the staff, Chloe doesnt even have speech therapy ???  Jane x

Jane,My daughter is 9 yrs old.She was diagnosed at 5 yrs old.she ahd several strokes one severe one that left her with no use of her left side.Her recovery has been steady but slow.She still ahs no functional use of her elft hand and arm.she's walking with the help of an AFO and SMO.She's gained back a lot of speech so far but has a long way to go.She gets 5 speech sessions a weeka t school.She's in a reg Education classroom with an aid and special ed support.She also gets 3 OT and 3 PT every week.Why doesn't your daughter get speech??? Does she get OT and PT??? I'de love to help you if I can just ask away with any specific questions you have.You can also e-mail me direct if you'de like.We never give up hope that Kathleen will keep making gains forward.I look forward to hearing about your daughter
Mary Grace
mgrace5@nycap.rr.com

Hello Mary Grace
Nice to hear from you.
Your daughter gets so much help, it doesnt seem right that Chloe doesnt ???  I have enquired and they just say they havnt got the staff.
It just all seem wrong, i just want Chloe to have the best possible chances.
Jane x

Jane have you checked into your laws on special educationa nd related services?the law here says that staffing or funds can NEVER be an excuse for not providing services.that's not to say that we have to fight for what our child needs at times because they do try to get away with doing things as cheaply as they can.That would be the first place to start checking your laws that apply to school.that's where kathleen gets her services.Have you tried getting services through your insurance?or through something like our Medicaid which provides people wiht dissabilities free insurance which can be used for therapy.Kathleen does get a lot of help and I don't know where she'd be without it.We also started electrical stimulation on her affected arm and hand,our insurance has paid for a machine to use at home so she doesn't have to go to a facility for the therapy.Please let me know if there's anythin I can help with.Even if it's advice on what our therapists do that you can do at home.How is your daughter doing? How is school going for her?
Mary Grace

Mary Grace,
                What is an smo? Mandy wears an afo but I've never heard of an smo...what does it do where does she wear it. Thanks.
                   Nancy :)

 Nancy, Kathleen wears an SMO on her right foot now.It's shorter than the AFO(only up to her ankle), and has no hinge jsut a "notch" cut out so her ankle can bend,it's used to hold her right foot in place.The foot part looks like the AFO.Her right foot was "colapsing" just like her left had.Turning inward such that her ankle bone was almost touching the floor.It seems like it's just never ending wiht the orthotics,we're constantly making adjustments and just when we get it right she outgrows it.I haven't seen you post much lately how is Mandy doing doing?
Mary Grace