Diagnoses, Assessments, and Turning 18...oh my!
So, let me get this straight:
S cannot stay by herself without getting on the internet and spending $100 she does not have or taking money out of my wallet and going to the store and getting, then eating, an entire box of Oreos. She can't get her homework done without someone sitting next to her. She has no idea how to function in most social situations. She would spend hours twirling around on pointe if she could.
She's making progress in all of these areas--lots of progress, actually--but, bottom line, she's not going to be able to be on her own when she turns 18 in a month.
Still, she needs a diagnosis other than her current diagnoses--math disability, PTSD and ADHD--to get any resources post-age-18.
All right, not a problem. The school is going to do an evaluation, required every two years for any student receiving special education services. Only the "evaluation" includes two tests and an "interview" (questionnaire) that I fill out. Also, her special ed teacher observes her in three classes and writes down what she does. From that information, the school decides she doesn't have any learning disabilities, but that she will continue to qualify as an "EBD" student (emotionally and behaviorally disturbed), whereas before, she qualified as both EBD and SLD (specific learning disability). So, they have to help her with emotional stuff but not with, you know, actually learning anything. Also: "we can't diagnose her with anything specific, except to say that she doesn't have a learning disability and is emotionally disturbed. Sorry, that's not our job."
No problem. Her psychiatrist, who mostly just writes her meds scripts after quick check-ins with us once a month, convinces my insurance to pay for a thorough evaluation. After two days of testing and a month's wait, in addition to ADHD and PTSD, S is diagnosed with a non-verbal learning disability. This diagnosis fits her skills incredibly well. It is diagnosed based on a huge discrepancy between her verbal IQ score and other aspects of her score. The diagnosis requires very specific accommodations if she is to learn well. It also affects her social skills.
The doctor also diagnoses a rule-out for OCD, ODD, and Aspergers. That means she may or may not have these, he's not sure.
After getting his report, I realize I have evidence that she needs help with learning, not just with emotional issues. But the school cannot use this report--they can only use their own evaluation, unless I write a request stating that I disagree with their findings and want them to pay for an outside evaluation. I already _have_ an outside evalution--but that doesn't matter.
Next, I connect with Human Services. Her IQ is too high for her to qualify for services, and without a definite Aspberger's diagnosis, the others "don't hold much weight." But, they can send a psychologist to our house to do a "functional assessment," and maybe he can make a "more specific diagnosis using the language we need for our files."
"Wait!" I say excitedly. "She's having a functional assessment done next week!" Vocational Rehabilitation Services has convinced me to allow my child to stay for four nights at another family's house and to take a bunch of tests at the workforce center an hour away to determine what her living and work skills are like."
"That sounds like a good idea," the social worker says, "but we need to have our own assessment. Vocational Rehab can't diagnose her. That's not their job."
OK, fine. A psychologist Human Services contracts with comes to our home, talks with S for 30 minutes, then with me for 30 minutes, and, at the end, asks me, "Has anyone ever talked about an Aspberger's diagnosis?"
"No," I reply, confused. "I thought that's what you were doing here--trying to determine if she had Aspberger's."
"No, I just want to know about her daily living skills," he says. "I can't make an actual diagnosis."
"But the social worker said we need a diagnosis to get services?"
"Really? Well, I can't do that. But I'll write up a nice report saying that even though her IQ is too high to qualify she still has some issues with living and work skills. Maybe that will help."
He leaves, and S announces that he is the dumbest person she's ever met. I can't really disagree.
In the meantime, I contact the state S is from to request that my adoption assistance be continued another year. The woman on the line says it's possible, but not a done deal, and that she can't do anything until S is a month away from 18 in terms of responding to my request. So, I can't plan my summer finances, because I have no idea how much money we'll have coming in after she turns 18 next month. "But you should try Social Security," she suggests, "so you have a safety net in case we don't come through for you. She may qualify for SSDI."
So, I make an appointment with Social Security. But, they can't get us in until the end of this month--which turns out to be a blessing once I see the sheer weight of the paperwork I need to fill out to determine if S qualifies for disability income. "We'll need proof of a diagnosis," the unhelpful woman on the phone tells me.
"OK," I say. "So, what kind of a diagnosis does she need to qualify? She has PTSD and..."
The woman interrupts me. "Well, it's not only the diagnosis. We need proof that she can't work full-time."
"Well, she's going to have a vocational rehab assessment next week--will that work, if they determine she can't?"
"No, that's a different kind of assessment."
"So, how do we demonstrate that she can't work?"
"Well, if she's worked before and had to stop working..."
"She's 17. She has special needs. She's never had a job."
The woman seems perplexed. "Oh," she says. Long pause. "Well, we'll just need to see the diagnosis, and then talk to you and her. And if we need more information, we'll have to ask for another assessment."
So, let me get this straight:
--In order to get an IEP continued, the school has to do its own assessment. And, if you don't like the results (which I didn't), there's a long, paperwork-heavy grievance policy. All I want is for them to look at these other assessments, but not, that's not part of the grievance policy--instead, I have to request that they hire another person to redo the assessment.
--In order to get vocational rehabilitation services, VR must do its own assessment.
--In order to get services through Human Services, Human Services must have a diagnosis.
--In order to get a diagnosis, Human Services must have diagnosis language that "exactly matches what we need to see,"--but they can't tell me what that language is.
--In order to get Social Securty benefits, we need "a diagnosis," but I can't know what that is, and "the diagnosis may not be enough." But when I offer proof from other agencies that S has trouble making good decisions if she's left alone, well...that's not good enough.
--I need to get a guardianship for S, but in order to do so, I need to have evidence that she can't live on her own and needs help making decisions. Um...who, exactly, can verify this? The attorney isn't sure, but "hopefully one of these assessments she's getting will work."
--Why did I put my daughter through a two-day neuropsych exam again, if no one can use the results?
Dear Parents of Children with Disabilities,
Start the transition process early, even if the school swears that they are not required to start until the senior year. They are wrong. The school is supposed to begin transition services in 9th grade, but they won't help unless you really push them. And even if you do push them, they are unlikely to follow the IEP goals you put together, even if you create an entire curriculum that all they have to do is follow. So, in short, don't expect the school to prepare your child for the future, or to connect you to any resources you need.
Vocational rehabilitation may be helpful, but only if you actually call them and let them know you're paying attention to the fact that they've only met with your daughter twice in four years. When they do realize you're on the case, they will be very nice and start offering to assess her, and this may work out (I can't say for sure--I'll get back to you on that next week). But, in order to prepare for the assessment, plan to spend several hours filling out paperwork with questions that are already in multiple files at multiple agencies around the state.
Do not expect to get any assistance filling out any of the 120 pages of forms that you will need to fill out to get connected to multiple support offices, none of which talk to each other or accept each others' assessments. Expect to traumatize your child by forcing her to talk to multiple strangers and answer the same questions and take the same tests over and over--even if she already has a therapist and a family therapist and other resources, now. Strangers, you see, are much better able to determine her needs than anyone who works directly with her on a weekly or daily basis.
Expect your child to see through this and recognize that it is, as my daughter S put it, "complete and utter b.s."
Finally, be sure to have a plan B, in case, as soon as your kid turns 18, you find yourself utterly broke, without any kind of financial or medical support whatsoever. (Be sure you have a job with good health insurance that will keep your child on your policy past 18--but don't expect to keep your medical assistance, even if your copays alone for the meds she needs cost $200 or more a month).
And, don't be too idealistic. Despite the fact that we for some reason believe 18 to be a magic number, and even though you have busted your ass to get her everything she could possibly need to work through the challenging aspects of her disabilities--your child will not necessarily behave like an 18 year old when she is 18. She will not necessarily be able to go right from 17 to a job or to college. And, while holding S back was a good decision for our family, don't think that having another year in high school will solve everything--18 is the magic number, no matter what year your child is in school.
Also, when you are as frustrated as I am at the moment, please also feel free to call me. I promise to be a good listener. I know now how much we all need at least that. I also promise to help you advocate for your child--but I can't help with that until a few more years have passed, after I've figured out how to advocate for my own.
In the meantime, I do have some helpful advice: take care of yourself. Get exercise, get sleep, eat well, do what you need to do to stay balanced spiritually and emotionally. I am finally doing these things, and am finding I can take all this beaurocratic bullshit day by day, hour by hour.
In the end, the most important thing, besides self-care, is being present for your child. So if you find yourself ignoring her to make a phone call to one of the many agencies that has accidentally disconnected you after a long automated phone call in which you entered your child's social security number four different times--or if you find yourself distracted from what she's saying because you are filling out yet another form asking the same stupid questions about her independent living skills-- well, take a step back and think about what really matters. Time with your child matters more in both the short and long-run, I promise, than whatever it is you're doing--even if what you're doing has a chance of affecting her life as an adult.
And, finally, just keep telling yourself this: no matter what happens, you are going to be OK, and so is she.
Love,
Argie
S cannot stay by herself without getting on the internet and spending $100 she does not have or taking money out of my wallet and going to the store and getting, then eating, an entire box of Oreos. She can't get her homework done without someone sitting next to her. She has no idea how to function in most social situations. She would spend hours twirling around on pointe if she could.
She's making progress in all of these areas--lots of progress, actually--but, bottom line, she's not going to be able to be on her own when she turns 18 in a month.
Still, she needs a diagnosis other than her current diagnoses--math disability, PTSD and ADHD--to get any resources post-age-18.
All right, not a problem. The school is going to do an evaluation, required every two years for any student receiving special education services. Only the "evaluation" includes two tests and an "interview" (questionnaire) that I fill out. Also, her special ed teacher observes her in three classes and writes down what she does. From that information, the school decides she doesn't have any learning disabilities, but that she will continue to qualify as an "EBD" student (emotionally and behaviorally disturbed), whereas before, she qualified as both EBD and SLD (specific learning disability). So, they have to help her with emotional stuff but not with, you know, actually learning anything. Also: "we can't diagnose her with anything specific, except to say that she doesn't have a learning disability and is emotionally disturbed. Sorry, that's not our job."
No problem. Her psychiatrist, who mostly just writes her meds scripts after quick check-ins with us once a month, convinces my insurance to pay for a thorough evaluation. After two days of testing and a month's wait, in addition to ADHD and PTSD, S is diagnosed with a non-verbal learning disability. This diagnosis fits her skills incredibly well. It is diagnosed based on a huge discrepancy between her verbal IQ score and other aspects of her score. The diagnosis requires very specific accommodations if she is to learn well. It also affects her social skills.
The doctor also diagnoses a rule-out for OCD, ODD, and Aspergers. That means she may or may not have these, he's not sure.
After getting his report, I realize I have evidence that she needs help with learning, not just with emotional issues. But the school cannot use this report--they can only use their own evaluation, unless I write a request stating that I disagree with their findings and want them to pay for an outside evaluation. I already _have_ an outside evalution--but that doesn't matter.
Next, I connect with Human Services. Her IQ is too high for her to qualify for services, and without a definite Aspberger's diagnosis, the others "don't hold much weight." But, they can send a psychologist to our house to do a "functional assessment," and maybe he can make a "more specific diagnosis using the language we need for our files."
"Wait!" I say excitedly. "She's having a functional assessment done next week!" Vocational Rehabilitation Services has convinced me to allow my child to stay for four nights at another family's house and to take a bunch of tests at the workforce center an hour away to determine what her living and work skills are like."
"That sounds like a good idea," the social worker says, "but we need to have our own assessment. Vocational Rehab can't diagnose her. That's not their job."
OK, fine. A psychologist Human Services contracts with comes to our home, talks with S for 30 minutes, then with me for 30 minutes, and, at the end, asks me, "Has anyone ever talked about an Aspberger's diagnosis?"
"No," I reply, confused. "I thought that's what you were doing here--trying to determine if she had Aspberger's."
"No, I just want to know about her daily living skills," he says. "I can't make an actual diagnosis."
"But the social worker said we need a diagnosis to get services?"
"Really? Well, I can't do that. But I'll write up a nice report saying that even though her IQ is too high to qualify she still has some issues with living and work skills. Maybe that will help."
He leaves, and S announces that he is the dumbest person she's ever met. I can't really disagree.
In the meantime, I contact the state S is from to request that my adoption assistance be continued another year. The woman on the line says it's possible, but not a done deal, and that she can't do anything until S is a month away from 18 in terms of responding to my request. So, I can't plan my summer finances, because I have no idea how much money we'll have coming in after she turns 18 next month. "But you should try Social Security," she suggests, "so you have a safety net in case we don't come through for you. She may qualify for SSDI."
So, I make an appointment with Social Security. But, they can't get us in until the end of this month--which turns out to be a blessing once I see the sheer weight of the paperwork I need to fill out to determine if S qualifies for disability income. "We'll need proof of a diagnosis," the unhelpful woman on the phone tells me.
"OK," I say. "So, what kind of a diagnosis does she need to qualify? She has PTSD and..."
The woman interrupts me. "Well, it's not only the diagnosis. We need proof that she can't work full-time."
"Well, she's going to have a vocational rehab assessment next week--will that work, if they determine she can't?"
"No, that's a different kind of assessment."
"So, how do we demonstrate that she can't work?"
"Well, if she's worked before and had to stop working..."
"She's 17. She has special needs. She's never had a job."
The woman seems perplexed. "Oh," she says. Long pause. "Well, we'll just need to see the diagnosis, and then talk to you and her. And if we need more information, we'll have to ask for another assessment."
So, let me get this straight:
--In order to get an IEP continued, the school has to do its own assessment. And, if you don't like the results (which I didn't), there's a long, paperwork-heavy grievance policy. All I want is for them to look at these other assessments, but not, that's not part of the grievance policy--instead, I have to request that they hire another person to redo the assessment.
--In order to get vocational rehabilitation services, VR must do its own assessment.
--In order to get services through Human Services, Human Services must have a diagnosis.
--In order to get a diagnosis, Human Services must have diagnosis language that "exactly matches what we need to see,"--but they can't tell me what that language is.
--In order to get Social Securty benefits, we need "a diagnosis," but I can't know what that is, and "the diagnosis may not be enough." But when I offer proof from other agencies that S has trouble making good decisions if she's left alone, well...that's not good enough.
--I need to get a guardianship for S, but in order to do so, I need to have evidence that she can't live on her own and needs help making decisions. Um...who, exactly, can verify this? The attorney isn't sure, but "hopefully one of these assessments she's getting will work."
--Why did I put my daughter through a two-day neuropsych exam again, if no one can use the results?
Dear Parents of Children with Disabilities,
Start the transition process early, even if the school swears that they are not required to start until the senior year. They are wrong. The school is supposed to begin transition services in 9th grade, but they won't help unless you really push them. And even if you do push them, they are unlikely to follow the IEP goals you put together, even if you create an entire curriculum that all they have to do is follow. So, in short, don't expect the school to prepare your child for the future, or to connect you to any resources you need.
Vocational rehabilitation may be helpful, but only if you actually call them and let them know you're paying attention to the fact that they've only met with your daughter twice in four years. When they do realize you're on the case, they will be very nice and start offering to assess her, and this may work out (I can't say for sure--I'll get back to you on that next week). But, in order to prepare for the assessment, plan to spend several hours filling out paperwork with questions that are already in multiple files at multiple agencies around the state.
Do not expect to get any assistance filling out any of the 120 pages of forms that you will need to fill out to get connected to multiple support offices, none of which talk to each other or accept each others' assessments. Expect to traumatize your child by forcing her to talk to multiple strangers and answer the same questions and take the same tests over and over--even if she already has a therapist and a family therapist and other resources, now. Strangers, you see, are much better able to determine her needs than anyone who works directly with her on a weekly or daily basis.
Expect your child to see through this and recognize that it is, as my daughter S put it, "complete and utter b.s."
Finally, be sure to have a plan B, in case, as soon as your kid turns 18, you find yourself utterly broke, without any kind of financial or medical support whatsoever. (Be sure you have a job with good health insurance that will keep your child on your policy past 18--but don't expect to keep your medical assistance, even if your copays alone for the meds she needs cost $200 or more a month).
And, don't be too idealistic. Despite the fact that we for some reason believe 18 to be a magic number, and even though you have busted your ass to get her everything she could possibly need to work through the challenging aspects of her disabilities--your child will not necessarily behave like an 18 year old when she is 18. She will not necessarily be able to go right from 17 to a job or to college. And, while holding S back was a good decision for our family, don't think that having another year in high school will solve everything--18 is the magic number, no matter what year your child is in school.
Also, when you are as frustrated as I am at the moment, please also feel free to call me. I promise to be a good listener. I know now how much we all need at least that. I also promise to help you advocate for your child--but I can't help with that until a few more years have passed, after I've figured out how to advocate for my own.
In the meantime, I do have some helpful advice: take care of yourself. Get exercise, get sleep, eat well, do what you need to do to stay balanced spiritually and emotionally. I am finally doing these things, and am finding I can take all this beaurocratic bullshit day by day, hour by hour.
In the end, the most important thing, besides self-care, is being present for your child. So if you find yourself ignoring her to make a phone call to one of the many agencies that has accidentally disconnected you after a long automated phone call in which you entered your child's social security number four different times--or if you find yourself distracted from what she's saying because you are filling out yet another form asking the same stupid questions about her independent living skills-- well, take a step back and think about what really matters. Time with your child matters more in both the short and long-run, I promise, than whatever it is you're doing--even if what you're doing has a chance of affecting her life as an adult.
And, finally, just keep telling yourself this: no matter what happens, you are going to be OK, and so is she.
Love,
Argie
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