brain rehabilitation

[mg12061]

I'm comeing here to adults who have experienced strokes. I had a very dissheartneing experience with Kathleen and a neuropsychological evaluation (for school but done by an outside party). I had so many high hopes for this Dr. to help us with some strategies to help Kathleen in school. To help with her learning,memory,language,etc... this Dr. was teh biggest "downer" I've ever talked with about Kathleen's future. He was pretty much saying that her brian will most likely NOT rehabilitate any more than it already has and academic learning was probably a waste of time. Just work on Life skills at school. Forget about reading at a higher level and understanding, Science, math, etc. I left there in tears! How could someone expect me ot just give up on her! She's only 14 yrs old, and hasn't it been proven that the brian can rehab at any age and can form new pathways at any age if it's "exercised". He's "considered " to be a neuroligical rehabilitation specialist. His testing was not even all acredited test. He told me he had nothing new to add except to not set our expectations too high. OMG this is a prefessional talking!. I really spent a LOT of time trying to find the perfect person to do this eval. asking all the righht questions and they gave me all the answers I wanted to hear (just like a sales person). Sorry for the vent but does anyone have anything positive they can tell me about their rehabilitation experience??? Kathleen was also born with Down syndrome so she is definatly challenged but she's also a very hard worker who has come a long way in the 9 yrs since her strokes. Thanks for anything positive you can offer and sorry for the littel vent. I jsut have much higher hopes for Kathleen and want ehr challenged but I do know I have to accept whatever she can accomplish.
Mary Grace

[suse]

brain rehab

Mary,
That sounds just awful!! My opinion - get at least one more opinion/consult with a doc NOT affiliated with the guy you went to. It might be good to have two (2) copies of questions you want to ask; one for the doc and one for you, and this way you can go through them together.
With all the medical people I've seen over the years, I've only had a couple of doctors who were very kind and compassionate. (Unfortunately that isn't a subject they teach!!)

Susan

[mg12061]

Susan, Tahnk you for your response. I would love to get another opinion but insurance will not pay for another evaluation right away.It's very expensive so out of pocket is not really an option. About the Dr.s (and other professionals) Yyour right some are very comapssionate and some have none. I think the fact that Kathleen also has Down syndrome has clouded their view. They don't set the bar high enough and figure she's just going ot have to rely on others for help. I try to tell anyone who works with her that the greatest injustice you can do is to not challenge her. I'm hoping that Her teachers will help me to advocate for her transition into High school (next year) and help me to plan a program that is challenging and will help her brain to continue growning and becoming enriched. Not to be stcuk in a self contained class that is only for life skills and no academics. Thanks again Susan.
Mary Grace

[Mal L]

Good for you for your plans to advocate for Kathleen. This will help in the enrichment of her mind. Also, any life skills you include should be of value in the long run. She is at a good age to continue learning.

[KATHYINBROOKLYN]

Faith in oneself is the best motivator

That's just awful. Here is what I can offer. It has been my experience with neurologists and neurosurgeons tonearly always keep positives to a minimum In that way I think they are not offering false hope. It has also been my experience and observation that children with MRDD are much more rehabbable if they are Down's syndrome kiddos. On the stroke issues, I know with myself the sky's the limit because I was and still am very motivated. It sounds to me like Kathleen is motivated also and I know you are her best cheerleader.Are you going to mainstream Kathleen in high school? She would definitely benefit big time from skills for living but academics is an entire different topic that I have no background in. Good luck Kathy

[mg12061]

Thank you for your response. I do understand not giving false hope but this Dr. had nothing positive to offer and nothing to offer as far as strengths and how to build on the strengths(no matter how small they seem) or how to either work around her challenges with strategies or work on makeing them less challenging. She's still a child with soooo much potential, who has not so far seemed to plateau at all. I would think that a good neuropsychologist who "specializes" in neurological rehab would have at least SOME answers and ideas. When I interviewed him for the "job" eh was so positive and thought he would be a great fit for evaluating her and working with our school. he also told me at the last meeting that he couldn't go to her school because insurance would not pay him. This is not the first time I've been "snowed" by a psychological professional. They tell you what you want ot hear and that they're speciality is exactly what your looking for. Sorry for the vent... but he was so unprofessional. I assured him I'm not "looking through rose colored glasses" but just not limiting her potential. He just shook his head... Kathleen is extremely motivated and finds great pleasure in every small accomplishment. She loves bveing with and working together with her peers and they love working with her. I do want her to get some "life skills" but not all day. she needs to ineract with her typical peers too. Kathleen has been totally mainstreamed with modifications and a TA since Kindergarden and LOVES it and is LOVED by her peers. This has given her a great base of friends who work with ehr now in middle school and challenge her with great care. Her favorite class is Science and she learns as little or as much as is appropriate in eahc unit and that's what she's tested on. she does labs with her peers help and her peers never fail to stop and say hello to her whenever they see her. I'm not sure what her program will be in High school but hopefully a good mix of life skills and academics. Thanks again for the response...
Mary Grace

[Mal L]

I would say that this is not a matter of false hopes. It is rather a matter of fair opportunity.

[mg12061]

I would say that this is not a matter of false hopes. It is rather a matter of fair opportunity.

Well put!! That's exactly how I feel you put it into the perfect words for me!
Mary Grace