Re: CSWS and Aspergers

[Guest guest]

I do not know much about the Landau Kleffner or epilepsy part- mine has Aspergers and Tourettes and abnormal EEG, but I can tell from reading your post you ae in desperate need of respite- i wld call yur local support agencies and see if you can get some help- you need to be refreshed to deal with what we do day in and day out. Support groups are one part of that but respite are another part.

From: Amy <amym321@...>Subject: ( ) CSWS and Aspergers Date: Thursday, October 14, 2010, 11:03 AM

Wow, I finally got time to sit down and read some of these posts. Upon reading them, I broke down and cried. My son was diagnosed with CSWS epilepsy with Landau Kleffner variant with aspergers symptoms. As I read more of your posts they sound just like my son. My son is almost 6 and somedays we act like 2 and other days we are 5.

Every day is a new adventure, recently the meltdowns have been so severe. I think there are times when he just wants to crawl out of his skin and I feel so bad for him. My daughter constantly is saying she wants a normal brother and on his really good days she plays with him and he enjoys it. But recently he has easily become so agressive and his mouth says some really foul words that I have no idea where they came from. There are days when I struggle to get his aggressiveness down. I have bruises on my arms and back at times because of bites and things being thrown at me. The school told us last night at his IEP meeting that we really need to be more involved in a support group for children that are high functioning.

There are days when I get up and want to run because he starts out on a meltdown and you know you can't leave the house that day. He can't handle it. My daughter is constantly missing out on things because plans are changed because he wont leave the house and has a meltdown. I try to take her separately to do things but she has such a sad face at times..so hard.

Recently things have been so crazy and it feels like life will never be halfway normal. My son is not potty trained because the Landau Kleffner causes him to forget from day to day what he has learned.

He is such a beautiful child so loving and cannot handle it when I am gone for a day. He gets upset and emotional and tells me I can't leave again.

Just needed to vent I guess...

Thanks,

Amy

[Guest guest]

You might try posting a picture schedule for going to the bathroom. We did that once for a more severely autistic little guy I worked with. He couldn't remember sequences well. we also then walked him through the process a zillion times. (he has seizures too so he forgets a lot he has learned.)

I don't know much about LK but sounds like you should talk to the doctor about meds or alternately, find a behaviorist (look for ABA providers in your area.) I know how you feel because my oldest was this way as a toddler and I knew when he got going on a bad day, we were stuck for the day. Are you in the USA? If so, locate your local health department and ask about services for developmental disabilities. Here in Ohio, for instance, we have MR/DD facilities that are supposed to help families just like ours. They also have respite services. I don't know how good that is or how hard it is to get them to be helpful, but you should try and see what is out there.

Roxanna

"I

predict future happiness for Americans if they can prevent the government from wasting the labors of the people under the pretense of taking care of them." - Jefferson

( ) CSWS and Aspergers

Wow, I finally got time to sit down and read some of these posts. Upon reading them, I broke down and cried. My son was diagnosed with CSWS epilepsy with Landau Kleffner variant with aspergers symptoms. As I read more of your posts they sound just like my son. My son is almost 6 and somedays we act like 2 and other days we are 5.

Every day is a new adventure, recently the meltdowns have been so severe. I think there are times when he just wants to crawl out of his skin and I feel so bad for him. My daughter constantly is saying she wants a normal brother and on his really good days she plays with him and he enjoys it. But recently he has easily become so agressive and his mouth says some really foul words that I have no idea where they came from. There are days when I struggle to get his aggressiveness down. I have bruises on my arms and back at times because of bites and things being thrown at me. The school told us last night at his IEP meeting that we really need to be more involved in a support group for children that are high functioning.

There are days when I get up and want to run because he starts out on a meltdown and you know you can't leave the house that day. He can't handle it. My daughter is constantly missing out on things because plans are changed because he wont leave the house and has a meltdown. I try to take her separately to do things but she has such a sad face at times..so hard.

Recently things have been so crazy and it feels like life will never be halfway normal. My son is not potty trained because the Landau Kleffner causes him to forget from day to day what he has learned.

He is such a beautiful child so loving and cannot handle it when I am gone for a day. He gets upset and emotional and tells me I can't leave again.

Just needed to vent I guess...

Thanks,

Amy