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My suggestion is to have your son get a complete Neuropsychological evaluation. Often they will be completed by a psychologist (or a psychiatrist or a neurologist) specifically trained to do that type of testing. It is a complete battery of tests involving all types of cognitive, fine motor and speech evaluations. Often, it will involve a lengthy health & educational history before the actual assessment. It probably would take three to four hours to complete the entire battery of tests. In my city the best place to have this done is at a major hospital that is connected to a Medical school, but I assume that you can check with the neurology department of most hospitals to find out where to go in your area.
Why would this be important? It would show you and your son areas of strengths and weaknesses. It would also be a documentation of his problems which may help in the future to get assistance in job training, modifications for jobs or possibly to help qualify for SSDI (or something similar).
A complete set of tests can also be helpful in cases where there is a large range of skills. Often the psychologist will write recommendations that can be very helpful. For example, if the psychologist recommends that your son keep daily lists of tasks that need to be completed he probably will do that more often than if he is just told by Mom that it is a good idea.
Since he has a "hidden disability" having accurate documentation may help in getting additional services as an adult. It can also help his siblings and other family members better understand his needs.
I'm out the door, but will respond later. No idea who told you brain injury only results from blunt force head trauma. A stroke itself IS a brain injury.
A NEUROLOGIST can examine and a assess possible brain injury. An SSI caseworker who is not medically qualified cannot.
I have always know that. The "expert" was being a jerk.
Quote:
Originally Posted by germaine2626
My suggestion is to have your son get a complete Neuropsychological evaluation. Often they will be completed by a psychologist (or a psychiatrist or a neurologist) specifically trained to do that type of testing. It is a complete battery of tests involving all types of cognitive, fine motor and speech evaluations. Often, it will involve a lengthy health & educational history before the actual assessment. It probably would take three to four hours to complete the entire battery of tests. In my city the best place to have this done is at a major hospital that is connected to a Medical school, but I assume that you can check with the neurology department of most hospitals to find out where to go in your area.
Why would this be important? It would show you and your son areas of strengths and weaknesses. It would also be a documentation of his problems which may help in the future to get assistance in job training, modifications for jobs or possibly to help qualify for SSDI (or something similar).
A complete set of tests can also be helpful in cases where there is a large range of skills. Often the psychologist will write recommendations that can be very helpful. For example, if the psychologist recommends that your son keep daily lists of tasks that need to be completed he probably will do that more often than if he is just told by Mom that it is a good idea.
Since he has a "hidden disability" having accurate documentation may help in getting additional services as an adult. It can also help his siblings and other family members better understand his needs.
Good luck to you.
Thanks both of you for your very helpful advice. I so appreciate you getting me on track. I appreciate all the responses I have gotten. It feels good to be validated and given support. You have no idea. I have felt lost for some time, I feel hopeful today.
I am going to do my homework. His cardiac stuff is done at Johns Hopkins. I am going to get his cardiologist to give me a recommendation.
I'm out the door, but will respond later. No idea who told you brain injury only results from blunt force head trauma. A stroke itself IS a brain injury.
A NEUROLOGIST can examine and a assess possible brain injury. An SSI caseworker who is not medically qualified cannot.
I have always know that. The "expert" was being a jerk.
Quote:
Originally Posted by germaine2626
My suggestion is to have your son get a complete Neuropsychological evaluation. Often they will be completed by a psychologist (or a psychiatrist or a neurologist) specifically trained to do that type of testing. It is a complete battery of tests involving all types of cognitive, fine motor and speech evaluations. Often, it will involve a lengthy health & educational history before the actual assessment. It probably would take three to four hours to complete the entire battery of tests. In my city the best place to have this done is at a major hospital that is connected to a Medical school, but I assume that you can check with the neurology department of most hospitals to find out where to go in your area.
Why would this be important? It would show you and your son areas of strengths and weaknesses. It would also be a documentation of his problems which may help in the future to get assistance in job training, modifications for jobs or possibly to help qualify for SSDI (or something similar).
A complete set of tests can also be helpful in cases where there is a large range of skills. Often the psychologist will write recommendations that can be very helpful. For example, if the psychologist recommends that your son keep daily lists of tasks that need to be completed he probably will do that more often than if he is just told by Mom that it is a good idea.
Since he has a "hidden disability" having accurate documentation may help in getting additional services as an adult. It can also help his siblings and other family members better understand his needs.
Good luck to you.
Thanks both of you for your very helpful advice. I so appreciate you getting me on track. I appreciate all the responses I have gotten. It feels good to be validated and given support. You have no idea. I have felt lost for some time, I feel hopeful today.
I am going to do my homework. His cardiac stuff is done at Johns Hopkins. I am going to get his cardiologist to give me a recommendation.
I was also going to recommend the neuropsych testing. Even if you can't get it covered by insurance, I think it would be invaluable in terms of both understanding his actual deficits as well as for helping with any sort of benefits he might be eligible for.
You know what else is really difficult. I work with a lot of people my son's age. At times it can be heartbreaking that he does not line up with them. I know I cannot compare them and I really don't, they certainly have not been through everything my son has had to go through (did I mention he had scoliosis surgery too along with the four heart surgeries). It is just the hard reality.
And there are those uncomfortable moments when someone asks me my son's age and those questions that come along with that...What is he doing? Does he still live at home?
I strongly urge you to take him to a Neurologist FIRST for a thorough examination so the actual physical injury to his brain can be definitely confirmed and no longer questioned by any other service provider or agency. The Neurologist will be able to provide the examination results for his applications for SSI or other services. They will also refer him to other medical professionals as deemed necessary. I have a close family member with similar problems, and the Neurologist is the hub of her care and has been invaluable when it come to receiving services, including job training.
It sounds like you have in fact done an EXCELLENT job with your son and I encourage you to go forward with confidence in yourself and your ability to continue helping him. Best Wishes.
There may be co-morbid issues here. A clue is the naivete, executive function and speech issues. True, some sort of brain injury or stroke may have happened during the surgery. However, there may have been other issues already in existence prior to the surgery.
There may be co-morbid issues here. A clue is the naivete, executive function and speech issues. True, some sort of brain injury or stroke may have happened during the surgery. However, there may have been other issues already in existence prior to the surgery.
I know you mean well....but those issues were not there before. It is hurtful to even read that. May have happened??!! Please don't go there. It is heart breaking enough.
It always amazed me that if an adult has a stroke people get it, they get and see the damage that has occurred. When it happens to a child people do not understand.
I had time with my son for five years before his stroke.
The issues he has had after his stroke were not present before his stroke.
There may be co-morbid issues here. A clue is the naivete, executive function and speech issues. True, some sort of brain injury or stroke may have happened during the surgery. However, there may have been other issues already in existence prior to the surgery.
Were that the case, documentation from a couple of decades ago may not have occurred/be in existence, anyway.
OP, it's hard to tell from your accounting of events...WAS it acknowledged at the time of the surgery that he had suffered a stroke during it? Or is that something you've come to believe, but was never medically diagnosed or noted?
At any rate, neuropsych and neurological exams and evaluations will help tell if there is, in fact, disabling brain damage.
Were that the case, documentation from a couple of decades ago may not have occurred/be in existence, anyway.
OP, it's hard to tell from your accounting of events...WAS it acknowledged at the time of the surgery that he had suffered a stroke during it? Or is that something you've come to believe, but was never medically diagnosed or noted?
At any rate, neuropsych and neurological exams and evaluations will help tell if there is, in fact, disabling brain damage.
It was/is medically diagnosed and noted in his clinical files. It is on his neurological exam that he had months after his surgery. It is noted in his Speech Therapy notes. It is noted in his Pediatrician clinical notes.
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