Psychiatric admission for young child
February 6, 2014 8:11 PM Subscribe
My little one is going to be admitted to a psychiatric program. Please help me understand what that means.
My little one (think early primary) is going to be admitted to an outpatient psychiatric program, which would run during the day on weekdays. While all parties seem to agree that my child will benefit from this, I don't entirely understand what it means.
They (doctors, health department, hospital) say that they will be doing intensive screening/assessments and planning. They say they will be trying to figure out which of my child's multiple potential diagnoses could be there, whether there is anything else, what the triggers are, what helps, what the plan for supports at home/school/community need to be, what care will be needed later, etc. I kind of understand that part. What I don't really understand is what screening means and what they mean when they are talking about neuropsychiatric disorders, neurobiological disorders and underlying genetic conditions. There are only a handful of beds in this part of Canada for this and I know that, for my child to be considered, things have to be quite serious. I really think this intense period of assessment is necessary and that, if I review my child's condition with you all, you'd agree intervention is necessary, so I am not looking for anyone to question whether this is necessary. Tons of stuff has taken place so far and the problems persist and we want to turn the situation around. I just don't understand really what they are going to do to my child and what terms like neurobiological, neuropsychiatric and genetic conditions really mean. That part sounds kind of dire and scary to me. I'm also kind of in the dark about how I will be involved. It is kind of scary to have people go off with your kid in a psych ward, although I have reflected that it is approximately what happens when my kids go off to school each day - this is just in a hospital setting. Everyone I have met so far seems very kind and concerned and they haven't forced anything on us and seem to want a lot of parental involvement. I just really don't know what we are in for and wondered if anyone might know. I've never heard of such a young child going into a program, whereas I know a little more about what teens go through in psych programs. Yes, I know we can ask the program and our doctors for more info, but I thought maybe some Mefites could help by telling it from a different perspective.
Just please don't scare the heck out of his mommy.
Thanks in advance.
My little one (think early primary) is going to be admitted to an outpatient psychiatric program, which would run during the day on weekdays. While all parties seem to agree that my child will benefit from this, I don't entirely understand what it means.
They (doctors, health department, hospital) say that they will be doing intensive screening/assessments and planning. They say they will be trying to figure out which of my child's multiple potential diagnoses could be there, whether there is anything else, what the triggers are, what helps, what the plan for supports at home/school/community need to be, what care will be needed later, etc. I kind of understand that part. What I don't really understand is what screening means and what they mean when they are talking about neuropsychiatric disorders, neurobiological disorders and underlying genetic conditions. There are only a handful of beds in this part of Canada for this and I know that, for my child to be considered, things have to be quite serious. I really think this intense period of assessment is necessary and that, if I review my child's condition with you all, you'd agree intervention is necessary, so I am not looking for anyone to question whether this is necessary. Tons of stuff has taken place so far and the problems persist and we want to turn the situation around. I just don't understand really what they are going to do to my child and what terms like neurobiological, neuropsychiatric and genetic conditions really mean. That part sounds kind of dire and scary to me. I'm also kind of in the dark about how I will be involved. It is kind of scary to have people go off with your kid in a psych ward, although I have reflected that it is approximately what happens when my kids go off to school each day - this is just in a hospital setting. Everyone I have met so far seems very kind and concerned and they haven't forced anything on us and seem to want a lot of parental involvement. I just really don't know what we are in for and wondered if anyone might know. I've never heard of such a young child going into a program, whereas I know a little more about what teens go through in psych programs. Yes, I know we can ask the program and our doctors for more info, but I thought maybe some Mefites could help by telling it from a different perspective.
Just please don't scare the heck out of his mommy.
Thanks in advance.
Generally a lot of tests that focus on these sorts of thing focus a lot on professional observation. So, kiddo will get tasks (build the blocks like in this picture) and kiddo will try. Based on how kiddo problem solves, follows directions, understands, is able to focus on task, emotional regulation during stressful periods, and actually how the diagram comes out can tell so many different things.They'll probably run scenario's similar to this (and other cognitive testing) to figure out strengths and weaknesses.
For example, my wife has a learning disability. It affects her executive functioning (think problem solving, long term planning)but she is extremely intelligent and has fantastic verbal skills. Accommodations she got in school included her being able to verbally explain answers instead of essays (due to attentional difficulty with ADHD). She also has some dyslexia, so she would explain how a math problem would be solved instead of actually solving a problem, because her numbers would get mixed up and she would get the answer wrong even though she entirely understood the procedure.
In addition they will spend time just observing social interaction. How does conflict get solved? Does he become very emotional, or very withdrawn? Does kiddo avoid eye contact? Does Kiddo wait to become involved in something until total mastery? Does kiddo get overstimulated? Is kiddo ridged with rules and unable to be flexible in play?
After lots of observation, it is easier to piece together what will be effective and what will be ineffective based on how kiddo currently reacts/current level. They will be able to meet kiddo exactly where he is at developmentally and create a plan to help him grow and change unhealthy behaviors, learn adaptations for deficits, and create realistic expectations for change.
Of course, ask your doctors as many questions as you would like, ALL the time. You are the parent, if the doctor isn't explaining it well, it is okay to ask for someone else to try and explain it to you.
posted by AlexiaSky at 9:15 PM on February 6, 2014 [2 favorites]
For example, my wife has a learning disability. It affects her executive functioning (think problem solving, long term planning)but she is extremely intelligent and has fantastic verbal skills. Accommodations she got in school included her being able to verbally explain answers instead of essays (due to attentional difficulty with ADHD). She also has some dyslexia, so she would explain how a math problem would be solved instead of actually solving a problem, because her numbers would get mixed up and she would get the answer wrong even though she entirely understood the procedure.
In addition they will spend time just observing social interaction. How does conflict get solved? Does he become very emotional, or very withdrawn? Does kiddo avoid eye contact? Does Kiddo wait to become involved in something until total mastery? Does kiddo get overstimulated? Is kiddo ridged with rules and unable to be flexible in play?
After lots of observation, it is easier to piece together what will be effective and what will be ineffective based on how kiddo currently reacts/current level. They will be able to meet kiddo exactly where he is at developmentally and create a plan to help him grow and change unhealthy behaviors, learn adaptations for deficits, and create realistic expectations for change.
Of course, ask your doctors as many questions as you would like, ALL the time. You are the parent, if the doctor isn't explaining it well, it is okay to ask for someone else to try and explain it to you.
posted by AlexiaSky at 9:15 PM on February 6, 2014 [2 favorites]
You need an advocate. Someone who can write things down and help you to get answers which you may be too overwhelmed to do in the moment. And the first poster is right, without knowing the symptoms your child has any specifics given can be really, really off and even more so for childhood disorders which often look very different from adult counterparts (if they exist) and thus are assessed differently, as well as being treated differently.
An advocate could be a social worker, a friend, anyone who has your interests at heart and is making sure you are understanding the process. Doctors oftentimes don't pick up on the fact their patients (or parents) aren't getting everything they are saying.
posted by Aranquis at 9:43 PM on February 6, 2014 [5 favorites]
An advocate could be a social worker, a friend, anyone who has your interests at heart and is making sure you are understanding the process. Doctors oftentimes don't pick up on the fact their patients (or parents) aren't getting everything they are saying.
posted by Aranquis at 9:43 PM on February 6, 2014 [5 favorites]
I think you need to seek out support and advocacy, either from your peers (ie, other families living with, for lack of a better term, "mental illness") or from organizations that focus on helping and representing people like you.
It's really tough, because mental health resources for children and families in Canada is really a patchwork. There is nothing like the nurse 811 helpline in British Columbia where you can ask questions and get simple answers.
I'm not sure what province you are in (jessamyn or another mod: could you ask the OP what province they are located in?), but since I know BC best (I used to work for Ministry of Children and Families), here's what I could find:
Canadian Mental Health Association http://www.cmha.bc.ca/get-informed/crisis-information
As a secretariat, the CMHA has some links to *potential* sources of help, although most of the information is geared for children and families in crisis, or pre-diagnosis. The link above has some non-crisis contacts.
My suggestion is to give them a call.
Here To Help http://www.heretohelp.bc.ca/
CMHA BC links to this BC organization. They (typically) don't seem to offer any advocacy services, but they do recommend contacting your local crisis line even for a non-emergency. That might be your best bet: http://www.heretohelp.bc.ca/get-help#supports
posted by KokuRyu at 12:10 AM on February 7, 2014
It's really tough, because mental health resources for children and families in Canada is really a patchwork. There is nothing like the nurse 811 helpline in British Columbia where you can ask questions and get simple answers.
I'm not sure what province you are in (jessamyn or another mod: could you ask the OP what province they are located in?), but since I know BC best (I used to work for Ministry of Children and Families), here's what I could find:
Canadian Mental Health Association http://www.cmha.bc.ca/get-informed/crisis-information
As a secretariat, the CMHA has some links to *potential* sources of help, although most of the information is geared for children and families in crisis, or pre-diagnosis. The link above has some non-crisis contacts.
My suggestion is to give them a call.
Here To Help http://www.heretohelp.bc.ca/
CMHA BC links to this BC organization. They (typically) don't seem to offer any advocacy services, but they do recommend contacting your local crisis line even for a non-emergency. That might be your best bet: http://www.heretohelp.bc.ca/get-help#supports
posted by KokuRyu at 12:10 AM on February 7, 2014
I'm not a big fan of contacting social workers or the government directly, unless you have some guarantee of anonymity. Social workers are not really there to represent your interests (although they do take the welfare of your child very seriously), and can be very dangerous.
posted by KokuRyu at 12:12 AM on February 7, 2014 [3 favorites]
posted by KokuRyu at 12:12 AM on February 7, 2014 [3 favorites]
I would retain a family lawyer so that you can have an advisor to help you understand the legal ramifications. What if you don't agree with the treatment plan? You need to have some recourse and options. The time to build that in is now.
posted by zia at 2:10 AM on February 7, 2014
posted by zia at 2:10 AM on February 7, 2014
I can tell you what screening a child for autism involves, if that might help you, but I don't know if screening for other diagnoses is similar. I'm only trained in autism.
Screening for autism involves, primarily, a test called the Autism Diagnostic Observation Schedule. It comes in four versions for different ages, but the general idea is the same. It's a series of play and talking activities with a child. The tester would have a lot of toys and puzzles and try to engage your child in playing with them - dolls, books, balloons, puzzles, cars, all sorts of things. They would be looking at how well they can draw your child into interacting with them and at specific aspects of how your child plays, pretends, tells stories, etc. They may also ask your child to tell them some short stories about things like "who is your favorite friend" or "tell me about what you like for breakfast" or something like that, if your child is old enough and verbal enough for that to be appropriate. This all takes from 1-2 hours depending on age, how many breaks your child needs, how willing he or she is to do the activities, etc. Some kids find it fun, others boring or annoying, but the only time I ever saw it be scary for a child was one kid who had a deep fear of dolls. If your kid has any phobias, you might want to mention that up front so they can consider an alternate activity.
Autism screening generally also involves input from you. Questionnaires about your child's behavior, or if they have the time and the specially trained staff, a long interview called the Autism Diagnostic Interview that will go into exhaustive detail about your child's developmental history and current and past behavior. That interview can be emotional for parents, I had a few cry. The full thing takes 1.5 hours but there's a shorter version that clinical places often use.
There would likely also be some form of IQ test, maybe some tests of verbal and spatial and motor skills, maybe some tests to try to understand how your child thinks about and reacts to other people. The tests might vary but for a child that age they're all going to be structured as play and your child will hopefully enjoy some of it, though he or she may think these adults have some dunb, boring games.
It could be that they're also talking about things like an MRI or blood tests, if they're looking at genetic issues. Your doctor would have to tell you that. If so, please feel free to MeMail me and I can talk abiut what that's like with a small child as well.
posted by Stacey at 3:14 AM on February 7, 2014
Screening for autism involves, primarily, a test called the Autism Diagnostic Observation Schedule. It comes in four versions for different ages, but the general idea is the same. It's a series of play and talking activities with a child. The tester would have a lot of toys and puzzles and try to engage your child in playing with them - dolls, books, balloons, puzzles, cars, all sorts of things. They would be looking at how well they can draw your child into interacting with them and at specific aspects of how your child plays, pretends, tells stories, etc. They may also ask your child to tell them some short stories about things like "who is your favorite friend" or "tell me about what you like for breakfast" or something like that, if your child is old enough and verbal enough for that to be appropriate. This all takes from 1-2 hours depending on age, how many breaks your child needs, how willing he or she is to do the activities, etc. Some kids find it fun, others boring or annoying, but the only time I ever saw it be scary for a child was one kid who had a deep fear of dolls. If your kid has any phobias, you might want to mention that up front so they can consider an alternate activity.
Autism screening generally also involves input from you. Questionnaires about your child's behavior, or if they have the time and the specially trained staff, a long interview called the Autism Diagnostic Interview that will go into exhaustive detail about your child's developmental history and current and past behavior. That interview can be emotional for parents, I had a few cry. The full thing takes 1.5 hours but there's a shorter version that clinical places often use.
There would likely also be some form of IQ test, maybe some tests of verbal and spatial and motor skills, maybe some tests to try to understand how your child thinks about and reacts to other people. The tests might vary but for a child that age they're all going to be structured as play and your child will hopefully enjoy some of it, though he or she may think these adults have some dunb, boring games.
It could be that they're also talking about things like an MRI or blood tests, if they're looking at genetic issues. Your doctor would have to tell you that. If so, please feel free to MeMail me and I can talk abiut what that's like with a small child as well.
posted by Stacey at 3:14 AM on February 7, 2014
I'm a principal of a therapeutic high school in the States for teens with emotional and behavioral issues, and most of our students have had hospital-based assessments done. This is a very broad answer.
This type of assessment happens when there's SO MUCH going on with a kid that a team determines they need more answers to get a really comprehensive look at a child instead of throwing darts at a dartboard.
In my experience, these are done when a child can no longer successfully function at school after many educational and behavioral interventions have been put into place. Usually a team of educators, administrators, psychologists and parents meet and decide that further evaluation must be done in order to help a child.
So I would guess this is what's happened to your child.
What happens in a psychiatric assessment is that the kid goes in every day and they're tested by psychiatrists, pediatricians and educators.
They get a fully comprehensive physical. Then they work with a psychiatrist who assesses if the kid has features consistent with various mental health conditions. Usually an educator but sometimes the psychiatrist or a psychologist will then assess if the child has learning disabilities.
The tests are by no means difficult for the student; it's drawing pictures and making block patterns, writing and reading if they can, etc. But they do require a fair amount of focus and they can be draining in that way. Spread out over a week, they're not very taxing, but they're not really "fun."
And then what happens is you will get a report (usually within 6 weeks the most) that has all of this information, and you will meet with the school district and the assessors and discuss educational options for your child.
What these types of reports will indicate is first, are there physical reasons causing the child's issues (think things like migraines or joint issues). Then, are there psychiatric concerns? Depression? Anxiety? Features consistent with autism? And then, everyone discusses the educational assessment. Does the child have visual/spatial issues? Slower processing speeds? Dyslexia?
Working with kids, what we see over and again is there are usually several things going on. A kid may have headaches, food dye allergies, dysgraphia, sensory integration issues and signs of depression, for example. With all of this information, schools are better prepared to come up with a plan that addresses all of these.
While your kid is there, be as positive and supportive as you can. Ask questions. Assume your child will be exhausted by the end of the day and have lots of grilled cheese sandwiches and French Fries (or whatever treat they like).
Also, ask to have a meeting with someone on the staff to go through this with you. Take notes. We love it when parents ask questions.
Lastly, when the reports are done and the team reconvenes, ask more questions. Have them explain why X causes Y and so on. If possible, have someone come with you to the meeting and have them take notes.
Feel free to memail me if you have questions. This can be a scary time for parents.
posted by kinetic at 3:18 AM on February 7, 2014 [8 favorites]
This type of assessment happens when there's SO MUCH going on with a kid that a team determines they need more answers to get a really comprehensive look at a child instead of throwing darts at a dartboard.
In my experience, these are done when a child can no longer successfully function at school after many educational and behavioral interventions have been put into place. Usually a team of educators, administrators, psychologists and parents meet and decide that further evaluation must be done in order to help a child.
So I would guess this is what's happened to your child.
What happens in a psychiatric assessment is that the kid goes in every day and they're tested by psychiatrists, pediatricians and educators.
They get a fully comprehensive physical. Then they work with a psychiatrist who assesses if the kid has features consistent with various mental health conditions. Usually an educator but sometimes the psychiatrist or a psychologist will then assess if the child has learning disabilities.
The tests are by no means difficult for the student; it's drawing pictures and making block patterns, writing and reading if they can, etc. But they do require a fair amount of focus and they can be draining in that way. Spread out over a week, they're not very taxing, but they're not really "fun."
And then what happens is you will get a report (usually within 6 weeks the most) that has all of this information, and you will meet with the school district and the assessors and discuss educational options for your child.
What these types of reports will indicate is first, are there physical reasons causing the child's issues (think things like migraines or joint issues). Then, are there psychiatric concerns? Depression? Anxiety? Features consistent with autism? And then, everyone discusses the educational assessment. Does the child have visual/spatial issues? Slower processing speeds? Dyslexia?
Working with kids, what we see over and again is there are usually several things going on. A kid may have headaches, food dye allergies, dysgraphia, sensory integration issues and signs of depression, for example. With all of this information, schools are better prepared to come up with a plan that addresses all of these.
While your kid is there, be as positive and supportive as you can. Ask questions. Assume your child will be exhausted by the end of the day and have lots of grilled cheese sandwiches and French Fries (or whatever treat they like).
Also, ask to have a meeting with someone on the staff to go through this with you. Take notes. We love it when parents ask questions.
Lastly, when the reports are done and the team reconvenes, ask more questions. Have them explain why X causes Y and so on. If possible, have someone come with you to the meeting and have them take notes.
Feel free to memail me if you have questions. This can be a scary time for parents.
posted by kinetic at 3:18 AM on February 7, 2014 [8 favorites]
My experience is US based. Neurobiolgical issues are things like autism or learning disabilities, neuropsychological issues are things like bipolar disorder or schizophrenia, an example of a genetic disorder would be Wilsons disease. Hope this helps, I'm sorry for your struggle and I admire your willingness to get care for your child.
posted by SyraCarol at 3:21 AM on February 7, 2014 [3 favorites]
posted by SyraCarol at 3:21 AM on February 7, 2014 [3 favorites]
I have no direct experience with this, but NAMI is a favorite referral here and elsewhere, and they do offer support and education to parents of young children, as well as adults. The couple I know who run the program in my area (called "family to family") educate parents on psychotropic drugs, coping skills (for the parent!), and obviously, peer to peer support. See if you can find a group in your area.
posted by blue suede stockings at 4:39 AM on February 7, 2014
posted by blue suede stockings at 4:39 AM on February 7, 2014
There is nothing like the nurse 811 helpline in British Columbia where you can ask questions and get simple answers.
Is too. Telehealth Ontario is the same kind of idea.
To the OP: the best people to ask these questions of will be your child's treatment team. If you don't feel you are getting the answers you need, I guarantee that a specialized psychiatric centre will have people on staff whose entire job is to help translate medical speak into plain English.
If you're in Ontario and this is happening via CAMH I have a fair bit of experience with them and can help you navigate to someone who can help you. MeMail me or email anything@danielgadsby.ca with a throwaway address if you prefer.
posted by feckless fecal fear mongering at 5:10 AM on February 7, 2014 [2 favorites]
Is too. Telehealth Ontario is the same kind of idea.
To the OP: the best people to ask these questions of will be your child's treatment team. If you don't feel you are getting the answers you need, I guarantee that a specialized psychiatric centre will have people on staff whose entire job is to help translate medical speak into plain English.
If you're in Ontario and this is happening via CAMH I have a fair bit of experience with them and can help you navigate to someone who can help you. MeMail me or email anything@danielgadsby.ca with a throwaway address if you prefer.
posted by feckless fecal fear mongering at 5:10 AM on February 7, 2014 [2 favorites]
I'd request a sit down meeting with the team of doctors. Ask them things like:
- what tests are you going to run? Are they MRIs? Cognitive play-based tests? Blood tests? Genetic tests?
- what types of illness are you talking about? Bipolar disorder? Autism? Combination?
- what will his daily routine be like? Is there one nurse who will be primarily looking after him?
- how will we be keep up to date on the process? Are we sent home with a list of exercises that were done each day? Or do you send an email with an update? Or can we have a standing call each evening?
- what is the rough timeline that you expect? A few days? Week? Month?
- what happens after this portion of testing is done?
This isn't bothering the doctors. This is you advocating for your child and managing your own knowledge so you can be a participant in this process.
Personally, I'd request this meeting ASAP. Bring a friend who can take notes for you if possible.
Best of luck to you and your family! Hang in there.
posted by barnone at 5:26 AM on February 7, 2014 [3 favorites]
- what tests are you going to run? Are they MRIs? Cognitive play-based tests? Blood tests? Genetic tests?
- what types of illness are you talking about? Bipolar disorder? Autism? Combination?
- what will his daily routine be like? Is there one nurse who will be primarily looking after him?
- how will we be keep up to date on the process? Are we sent home with a list of exercises that were done each day? Or do you send an email with an update? Or can we have a standing call each evening?
- what is the rough timeline that you expect? A few days? Week? Month?
- what happens after this portion of testing is done?
This isn't bothering the doctors. This is you advocating for your child and managing your own knowledge so you can be a participant in this process.
Personally, I'd request this meeting ASAP. Bring a friend who can take notes for you if possible.
Best of luck to you and your family! Hang in there.
posted by barnone at 5:26 AM on February 7, 2014 [3 favorites]
We had two of our kids in something similar, one in a short structured program that was for kids with a range of issues. They showed us an outline of what would happen each week and explained the outcomes they hoped for and we had exercises and stuff. It was more like intense structured therapy over a short period, and the result was a diagnosis and intervention that made a big difference.
The other kid had court-ordered interventions for a diagnosis that did not go well for multiple reasons, mostly because the severity of the issues was way beyond what resources were being used, and now in sad hindsight, we can see that for some kids with severe issues, there just aren't enough resources because it's hard to tell what's developmental vs psychiatric vs family issues, and kids change so much as they grow up so the medical staff were reluctant to put a grim diagnosis on the kid until the magic age of 18 - even then we had to push for it, for legal reasons.
It is really hard to diagnose a kid with multiple issues going on. It's technically and functionally hard, so doing all the testing systematically is actually pretty damn efficient than making you wander from doctor to doctor over several years. Genetic testing will just mean blood samples usually, and the rest of it for a child will be playing games while a therapist observes and answering questions and more observation.
You should definitely talk to a lawyer if you can, someone who specialises in medical and disability, so you know your rights if your child isn't coping with the testing, and also you know to what extent you can access records (we can't where we live, even for a minor, afaik, and we had to argue with hospitals to get records for another doctor's access, and to get the full diagnosis released, not a summary) and also what happens if your kid has this diagnosis in terms of school and courts. Will your kid get more access to education options? Will this diagnosis be helpful or hurtful if they end up in court? That was what decided for us - with the diagnosis, our kid can now as an adult use it to ask for compassionate community sentencing for most minor crimes.
It was shattering to have to send that kid off for the testing and stuff at the hospital and the court-ordered stuff. To have doctors asking so many questions, to be arguing in a room full of people about just how ill your kid is - all of that was really hard because we felt so judged, and I work with and for social workers, and have had multiple positive home assessments and other healthy kids!
Be really really kind to yourself.
Keep notes on all the staff and the various terms they throw around. Talk to the nurses and attendants, make sure they see you as a nice and caring parent. Be punctual and organised, and don't lose your temper ever, although bursting into tears can help turn an argument around. Ask them for books and references for conditions they talk about and read them so they see you as an active intelligent participant. Keep track of your kid's behaviour and symptoms (dates matter) so you have notes to support things like "this medicine is not working, child has had night terrors seven times this month on dates x, y, z at this dosage."
Talk with your immediate family support, whoever that is. Have at least one sympathetic person who thinks you are a good parent to talk to when you are feeling terrible. Don't tell people who are likely to say mean or stupid things, just say something vague about "He's getting some tests done, just routine things, how are your kids?"
You could ask them to make a schedule for you of the tests, or ask them for a support group or contacts to other parents who have done the testing.
It's scary and isolating to be the parent of a kid with something psychologically wrong that isn't quite known but is more than garden-variety conditions. When you get a diagnosis, it's like getting a map. It's a map to a pretty awful place, but it's a map which beats blundering around in the dark.
Good luck. Be kind to yourself.
posted by kittypaw at 5:37 AM on February 7, 2014 [5 favorites]
The other kid had court-ordered interventions for a diagnosis that did not go well for multiple reasons, mostly because the severity of the issues was way beyond what resources were being used, and now in sad hindsight, we can see that for some kids with severe issues, there just aren't enough resources because it's hard to tell what's developmental vs psychiatric vs family issues, and kids change so much as they grow up so the medical staff were reluctant to put a grim diagnosis on the kid until the magic age of 18 - even then we had to push for it, for legal reasons.
It is really hard to diagnose a kid with multiple issues going on. It's technically and functionally hard, so doing all the testing systematically is actually pretty damn efficient than making you wander from doctor to doctor over several years. Genetic testing will just mean blood samples usually, and the rest of it for a child will be playing games while a therapist observes and answering questions and more observation.
You should definitely talk to a lawyer if you can, someone who specialises in medical and disability, so you know your rights if your child isn't coping with the testing, and also you know to what extent you can access records (we can't where we live, even for a minor, afaik, and we had to argue with hospitals to get records for another doctor's access, and to get the full diagnosis released, not a summary) and also what happens if your kid has this diagnosis in terms of school and courts. Will your kid get more access to education options? Will this diagnosis be helpful or hurtful if they end up in court? That was what decided for us - with the diagnosis, our kid can now as an adult use it to ask for compassionate community sentencing for most minor crimes.
It was shattering to have to send that kid off for the testing and stuff at the hospital and the court-ordered stuff. To have doctors asking so many questions, to be arguing in a room full of people about just how ill your kid is - all of that was really hard because we felt so judged, and I work with and for social workers, and have had multiple positive home assessments and other healthy kids!
Be really really kind to yourself.
Keep notes on all the staff and the various terms they throw around. Talk to the nurses and attendants, make sure they see you as a nice and caring parent. Be punctual and organised, and don't lose your temper ever, although bursting into tears can help turn an argument around. Ask them for books and references for conditions they talk about and read them so they see you as an active intelligent participant. Keep track of your kid's behaviour and symptoms (dates matter) so you have notes to support things like "this medicine is not working, child has had night terrors seven times this month on dates x, y, z at this dosage."
Talk with your immediate family support, whoever that is. Have at least one sympathetic person who thinks you are a good parent to talk to when you are feeling terrible. Don't tell people who are likely to say mean or stupid things, just say something vague about "He's getting some tests done, just routine things, how are your kids?"
You could ask them to make a schedule for you of the tests, or ask them for a support group or contacts to other parents who have done the testing.
It's scary and isolating to be the parent of a kid with something psychologically wrong that isn't quite known but is more than garden-variety conditions. When you get a diagnosis, it's like getting a map. It's a map to a pretty awful place, but it's a map which beats blundering around in the dark.
Good luck. Be kind to yourself.
posted by kittypaw at 5:37 AM on February 7, 2014 [5 favorites]
I was in a 6-month intense residential treatment program as a teenager. (Your child is much younger, but they get to live at home). I hated it at the time, but looking back at how it changed my entire life, I'm very thankful that my issues were addressed with the proper resources so early in life and I consider myself incredibly lucky.
posted by Juliet Banana at 7:26 AM on February 7, 2014
posted by Juliet Banana at 7:26 AM on February 7, 2014
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Without knowing what you and your child have been through already, the words his doctors are using could mean anything from autism to learning disorders to bipolar disorder to whatever.
I would hesitate to take to heart anything anyone not trained in psychiatric disorders will say to you here. Please reach out to your child's doctors and nurses. They really do want to help and they will explain every single thing to you until you're on the same page.
Take notes. That will help you when you're up late at night thinking about stuff and need to refer back to what Dr. A said before Dr. B came in. You might also find it helpful to get a copy of the latest DSM, if that's what they're using to diagnose your child.
posted by cooker girl at 9:14 PM on February 6, 2014 [7 favorites]