Acute Disseminated Encephalomyelitis (ADEM) Support Group

Education options for adem brain injury

My granddaughter is now 5 1/2. She will be post-adem 2 years in December. She was in a special needs school but teachers said she was too advanced and should be main-streamed. She is in kindergarten and has been main-streamed but teacher says she is unable to keep up with the class. She has her own paraprofessional with her, but has trouble staying awake. She has problems focusing on a task. Also has impulsive behavioral issues. She was blind for awhile but has regained enough eyesight to look at and enjoy books. I am so concerned as to where a child like this can go for an education with people that know how to deal with persons who have had a brain injury. She also cannot speak clearly so that you can discern what she is trying to say. She goes to speech therapy and has been going since she was in hospital. What are options for her? Does anyone else have problems with schools or what did you do?

Hello,

I’m an adult who had ADEM so can’t really advise on that.
My son does have severe autism though and it sounds like he has many problems that are the same as your daughter. The behavioural issues and the speech problems. He has a 1-1 in school. He’s at a special school here in the UK and they’ve had an autism specific campus built so all is geared to his needs. He still struggles and even now sometimes the staff don’t know what to do with him.
He’s off at the moment as he attacked the staff and they’re now off with injuries. They’re short staffed because of him :frowning:
Hopefully you can get some good advice about this.

I do understand how it goes though. My brain shuts down quite often and I have aggressive tendencies now sometimes. You really can’t control when that happens. You just have to see the signs (as a carer) and then leave her to it. Knowing when to back off is key to helping her cope with those situations.
Too much sensory input isn’t good. If many things are happening our brains can’t make head not tail of it all and we can switch off or get upset and angry.
This has all helped me understand my son a lot more. We both have meltdowns now! :frowning:

Sorry if this is of no use to you. I’m assuming you’re in the US? Things are very different there I think.

Lou x

Hi ladies

I’m Kayleigh my son is 2.5 years post ADEM we are in the UK also. Henri goes to mainstream school where he has 1-2-1 support and works much better on an iPad. He struggles to read and write and has issues processing information. He goes from strength to strength surprising us everyday. He also had sight issues as a result of ADEM and his eyes have began to recover fully these last 6 months. Adem is cruel it’s a silent assassin. Please do contact me for any advice we’ve done the whole process take care Kayleigh xx

Thank you for replies. My daughterlaw has a scheduled meeting with the teacher on the 24th. I guess we have to go through the chain of command as it were. If there is not a satisfactory answer, then move to principal and then school board etc etc. Kayleigh I’m so happy for your son. It sounds so encouraging., If I may ask how old is he? We are in the US and the system here is different. I am going to tell my dil about the ipad. Thank you so much. You have given me hope. Tess

COGMED (http://www.cogmed.com.au/) is very useful training to improve short-term memory issues. I undertook the Neuropsychologist-led training after I got post-vaccination ADEM when my long-term, working and short-term memory failed. I was about 45 at that time, but it worked very well for me. I know they have specific programs aimed at children.

I hope that helps

Mac

Thank you very much Mac!!! This is how we help each other.

Thank you Mac. I will look it up. My Granddaughter is struggling in Kindergarten. The teachers have decided to remove her from the class and try her in a very small class with her own teachers aide. We are hoping that less stimulation will be more conducive to her learning. Communication is such a struggle for her. They will also supply an IPad for her to try. This disease is so maddening and makes one want to scream. I wish you well. and again thank you for your information. Tess