Adult Teen received Diagnosis. As a Mother, now what? (teenage, out of control, wakes up)
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I've shared in the past that I have a recently-turned-young-adult teenage son who struggles with anxiety disorders. Earlier this week, we received a physical diagnosis that is the underlying cause of everything---a disorder of the nervous system, specifically a segment of the autonomic system that affects a large array of his bodily functions.
This was fantastic and heartbreaking news at the same time because his entire life now makes sense, but it's not easily treated. There is no cure and disorder management may or may not be possible.
Although he hasn't received a traditional education during the four years of high school, I didn't put him on disability because I had faith he could overcome his problems because he is an amazing person with so much potential----extremely bright, personable, etc. Was that a mistake? Social security requires a person works and pays into the system for three years before qualifying for disability. How does that apply to someone who is disabled prior to being able to work?
Don't get me wrong. I'm not planning to go that route at this time. But I'm wondering if he might run out of that option if we postpone seeking disability for much longer? Seriously. If we wait until he's 25, and he's never been able to work a day in his life, I wonder if we'll run into problems. Whereas, even though he just turned an adult, there might be a chance of fighting this in court since it can be proven that he has been disabled throughout childhood.
At the same time, I truly feel he still has the most amazing potential. I don't want to give up on him yet and just go the easy route of throwing in the towel. I've accepted that I have a young adult that very well might be living with me for a very long time.
I'd like to give a shout out to the parents of young children who are dealing with issues that other parents think they are babying them for---like the children who have food anxiety or food gag reflexes. My son never had those problems, but they fall within certain nervous system disfunctions. And I'm wondering why pediatricians aren't zeroing in on trying to help those children medically because it's not psychological. I wonder if a child with a nervous system disorder could benefit from diagnosis earlier in life. I wonder where we would be today if we had known that my son had this when he was in kindergarten. He didn't have difficulty functioning until 9th grade, but in hindsight his mild learning disability in kindergarten was one of the first clues that his nervous system was out of wack.
I'm just glad I trusted my mommy instincts and never gave up trying to seek an answer. I've had him to many specialists over the past four years. Some diagnosis made sense, but none completely added up. When we listened to this doctor explain what's wrong, my son's entire life made sense.
Now what? I'd like to hear from all parents----of healthy children (what IF this happens someday to you?), of struggling children (what have you done?) and even those tough love parents who think that a parent's responsibility ends when a child turns 18. I don't believe for a minute that my obligation to care for my child stops at 18. I'm going to do everything in my power to help him become independent, but that very well may not happen until he's 25? 30? There's no chyrstal ball.
You talk about his education. One of the things to consider is that some day you will not be around to take care of him. He needs an education of some sort. Have you considered homeschooling or private tutoring?
I don't have any words of wisdom for you except that although your son has a legitimate disability you really need to figure out a way for him to live normally without parental support. NOT because I advocate parents bailing on their adult children, but because he will need to be able to live without you at some point. I would seek support groups for his disorder to see what other parents have done.
I agree with Momma bear. Because your son is a young adult already, he needs to learn to live on his own. That should be your first priority. Say he goes on disability. Great, there's money coming in. BUT, what kind of pride is he going to have with his life? Since you didn't mention what his disabilities are, we are to assume that he can learn at least the fundamentals of existence.
Independence is a major accomplishment for any young adult. The more stigma you put on him with the Social Security and being dependent on you, the less he is apt to forge out on his own to live to that potential you speak of.
I have a nephew who has a mental disability. He is a young adult, mid twenties. He lives in his own apartment and is on meds. For a while, he lived in a group home in a town about an hour from his parents. He now works in that group home and does quite well. He is a motivational speaker for mental health in the state and is sought for speaking engagements by professionals in that field.
Because his parents recognized the importance of his independence, they encouraged him to be on his own no matter how much they wanted to protect him from the world.
I'd suggest that you look for state agencies that could lead you to any resources that are available to your son as far as residential housing or something of the like, and training for some kind of job.
As someone said, you won't always be there and he needs to be able to stand on his own and learn to advocate for himself.
You talk about his education. One of the things to consider is that some day you will not be around to take care of him. He needs an education of some sort. Have you considered homeschooling or private tutoring?
He has been receiving an education---just not a traditional high school education. He couldn't function in the normal full-time high school environment so he has been attending college instead of high school. As a result, my son will graduate from high school this year with a college degree.
The reason I mentioned it is the fact that he hasn't been able to attend traditional high school for four years is proof to social security that he is truly disabled. Afterall, his disability has hindered his ability to attend school on a full time basis. Even though he has managed a college degree, that was easier because classes were only a few hours a week and his education was spread out throughout the years by taking classes all year long without summers off. And he's graduating 4 months later than his graduating class because he still has three credits to finish this summer because he has been behind due to taking his credits more slowly.
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Originally Posted by Momma_bear
I don't have any words of wisdom for you except that although your son has a legitimate disability you really need to figure out a way for him to live normally without parental support. NOT because I advocate parents bailing on their adult children, but because he will need to be able to live without you at some point.
I totally agree. I'm just thinking about the fact that he will need to live with us for much longer than most adult children since we will be just starting treatment next month. This isn't going to be an easy road for him or us. As a result, I anticipate it will be similar to what we've dealt with for the last four years----baby steps of progress.
I'm not planning to support him for eternity because I know that won't be good for him-----I will die one day. Trust me---for his sake and mine I want nothing more than for him to be independent. I just see so much potential. I just don't want to throw in the towel and put him on disability when there's a possibility that he could overcome this and be able to function on his own, be completely independent and hold down a job SOMEDAY. That's what I meant.
I realize my initial post didn't make much sense. My thoughts are all over the place today. This is sort of overwhelming for me.
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Originally Posted by GottaBMe
Could you tell us the name of the disorder? I know of someone else who has a child with similar symptoms. Good luck.
Start by looking up autonomic nervous system. We're in the beginning stages of diagnosis to zero in on the specifics. His disorder may be in only a subsection of the autonomic system. For example, his heart rate falls below 30 when he's sleeping but is erratic when he's awake, his adreniline system is out of wack (his fight and flight response is a freeze response---and it takes a half hour for his adreniline to calm down when it just takes normal people a few minutes), he drenches the bed with sweat when he sleeps, he feels lightheaded and nausious when he wakes up in the morning, his pupils are slightly different sizes, his muscles twitch, he has headaches, he has excessive thirst and drinks almost two gallons a day, he used to have a great appetite, but now the thought of food often makes him feel sick. I could go on and on. It can be hereditary, due to trama or infection, etc.
I have an old friend who's sister is mildly mentally disabled. She is able to work but would never be able to earn enough money to support herself. She lives on her own and her parents supplement her income. Her sister (my friend) is considering buying a house for her to live in and taking a loss on the rent. Fortunately the parents and sister are well off enough to help in these ways. It works out well because she has some independence. Good luck.
I agree with Momma bear. Because your son is a young adult already, he needs to learn to live on his own. That should be your first priority. Say he goes on disability. Great, there's money coming in. BUT, what kind of pride is he going to have with his life? Since you didn't mention what his disabilities are, we are to assume that he can learn at least the fundamentals of existence.
Independence is a major accomplishment for any young adult. The more stigma you put on him with the Social Security and being dependent on you, the less he is apt to forge out on his own to live to that potential you speak of.
I think we're on the same page with this. I'm resistent to putting him on disability because I think that would be giving up. I'm just wondering and afraid----WHAT IF. What if after working hard to help him manage this and over come it, we discover when he's 25 that it's just not possible for him to become independent, but he can't even get social security because we didn't go that route when it was available. That's all. I'm just second guessing myself-----like I KNOW it's best that we do whatever it takes to help him become independent and successful, but WHAT IF he can't?
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Originally Posted by NoExcuses
I have a nephew who has a mental disability. He is a young adult, mid twenties. He lives in his own apartment and is on meds. For a while, he lived in a group home in a town about an hour from his parents. He now works in that group home and does quite well. He is a motivational speaker for mental health in the state and is sought for speaking engagements by professionals in that field.
Because his parents recognized the importance of his independence, they encouraged him to be on his own no matter how much they wanted to protect him from the world.
That's the main problem. If it were mental illness, I would feel that it would be manageable. Our problem right now is that a disorder of the nervous system is sometimes NOT managable. It might be. I'm an optimist, but I'm just trying to comprehend the WHAT IF. And I think it's too soon to toss him out into a group home. Afterall, he hasn't even started treatment. It would be like a child becoming paralized at 18 and not living witih parents while receiving the earliest parts of therapy that helps them learn to live life in a wheelchair. Hope that makes sense. I'm all for getting him out on his own, but it seems to me that it's going to happen on a different schedule than the norm. He needs to start treatment and become somewhat stabilized first.
... my son will graduate from high school this year with a college degree.
Start by looking up autonomic nervous system. We're in the beginning stages of diagnosis to zero in on the specifics. His disorder may be in only a subsection of the autonomic system. For example, his heart rate falls below 30 when he's sleeping but is erratic when he's awake, his adreniline system is out of wack (his fight and flight response is a freeze response---and it takes a half hour for his adreniline to calm down when it just takes normal people a few minutes), he drenches the bed with sweat when he sleeps, he feels lightheaded and nausious when he wakes up in the morning, his pupils are slightly different sizes, his muscles twitch, he has headaches, he has excessive thirst and drinks almost two gallons a day, he used to have a great appetite, but now the thought of food often makes him feel sick. I could go on and on. It can be hereditary, due to trama or infection, etc.
All of us should be so lucky as to graduate from high school with a college degree.
What exactly is the disability there? What prevents him from living on his own? What prevents him from working a few hours at a time, maybe at a couple of different jobs? Or even a full time job that keeps him moving and doing an array of things? Those particular symptoms aren't so confining that he couldn't do things or live on his own.
The Social Security thing should not be a problem no matter what time he applies. There is extensive documentation required as well as doctor's (perhaps a couple or few) suggestions (verification). But it has to be proven that he can't work.
All of us should be so lucky as to graduate from high school with a college degree.
Thank you. He's lucky he had a mother who made accomodations so he could continue his education when he was unable to attend school.
Quote:
Originally Posted by NoExcuses
What exactly is the disability there? What prevents him from living on his own? What prevents him from working a few hours at a time, maybe at a couple of different jobs? Or even a full time job that keeps him moving and doing an array of things? Those particular symptoms aren't so confining that he couldn't do things or live on his own.
Those symptoms are just an example of the wide range of the body implicated by this. Try managing to live with your heart and adreneline totally out of control. Try functioning when your adreneline literally causes your body to FREEZE for 30 minutes. And this happens for little things. His adreneline doesn't go off just for extremely frightening things like normal people.
He will definitely start working part-time this summer after he has finished school. His high school diploma is the priority right now. He can't work and go to school at the same time. We need to take baby steps. That's all I'm saying.
I'm happy that we have an answer. There's more of a chance that he might overcome this now that we know what's really wrong with him.
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I wonder if a child with a nervous system disorder could benefit from diagnosis earlier in life. I wonder where we would be today if we had known that my son had this when he was in kindergarten. He didn't have difficulty functioning until 9th grade, but in hindsight his mild learning disability in kindergarten was one of the first clues that his nervous system was out of wack.
