Momofone23
New Member
Hello, I'm so happy to have found this forum. I'm a single mom to a 21 year old son who lives with me full-time. He has a VERY complex profile and we are at the point now where I'm desperately trying to find him the help/support he needs to have any chance for a viable future. I'm hoping maybe some of you can help with some tips and guidance.
My son is not technically diagnosed with ASD, however he has a laundry list of other diagnoses, including Social Communication disorder, Tourette's, OCD, GAD, learning disabilities, and severe executive functioning and visual/spatial deficits. The HUGE challenge in his case is that he presents as a young man who has none of the above, yet he is so significantly impaired in ways that create very frustrating challenges for him in day to day life.
I'd like to share an analogy that I have shared with his psychologist and some close friends to help them understand the challenges and frustrations my son is dealing with and how we can get him the help and support he needs in order to have a viable future.
It's as if he has an invisible wheelchair that not only can others not see unless they have enough time to spend with him one-to-one across different settings, but he himself is unable and unwilling to see his invisible chair. He so desperately, with EVERY fiber of his being, wants to be just like every neurotypical 21 year old, of course who doesn't, so I totally get it. When he looks in the mirror each day all he can see is the handsome, talented young man that everyone else sees. He's not driving yet, and not sure when that will be an option, so imagine going out in the world each day with this invisible wheelchair stuck to you. Everywhere you go you constantly run into obstacles and can't figure out why. You look and talk just like your peers and others, you can get up on stage and sing and perform with amazing stage presence and charisma, you can spit out incredible song lyrics, you are articulate, friendly, sociable and outgoing. So what the heck is wrong? Why do you keep running into walls wherever you go....socially, relationships, attempts at employment, when you were in school, academics, and the list goes on. And on. And on.
You have the voice of an angel and incredible musical talents and set your sights on being the next pop sensation. You have the musical talent to do that, but you have no analytical skills, no street smarts, no business savvy, no ability to plan ahead even for 2 hours sometimes. You have a thin skin, significant impulse control, frustration, and emotional regulation issues, not to mention severe executive functioning and visual/spatial challenges. You hear these terms and will easily repeat them to others, but you really don't understand, and don't want to understand what they mean and how they impact you.
As time goes by, and you continue focusing all of your efforts on your music, which by now has become your entire identity, the wheels on your invisible chair begin to start rusting and it's becoming increasingly difficult for you to move about in the world. The harder you try the more difficult it becomes, especially when you are watching all of your peers pass you by. Going to college, driving, getting jobs, living on their own, girlfriends, boyfriends, etc.
Doctors, therapists, specialists, have struggled to understand your complex profile and how to help, but most end up being stumped in the end. In many ways you are almost savant-like. You have a high-average IQ and have single-handedly taught yourself sophisticated music recording software, and have incredible songwriting and vocal gifts. One minute you are sitting at your computer spitting out song lyrics and recording a song, and the next minute you are doing things like washing off your pills that just fell on the floor because they were dirty. Or racking up hundreds of $ in overdraft charges because you can't even pay attention to what you have in your small bank account. Or walking into a screen door you had just closed yourself a minute earlier. Or looking at a tall glass with a crack all the way down the side, and not understanding why it is dangerous to handle or drink out of.
No one aside from your mom (me) and people like your home-based social worker really see the extent of your impairments, not even you. Your mom has to keep a photo journal in order to get doctors, therapists, etc. to believe what she is seeing day to day because you present the complete opposite of how you function.
Okay, that's a MUCH longer analogy than I set out to write, sorry!! Bottom line, it's become apparent to myself and my son's current psychologist, and others working with him that his only hope is to find a mentor/coach that can essentially shadow him from morning to night each day across different settings to help him learn the critical life skills and other skills he will need to even be semi self-sufficient. Meanwhile back at the farm, I'm his emotional punching bag and it's gotten to the point of being unbearable. Unfortunately there are no other family members my son can live with and he's nowhere near the point of being able to function on his own.
Up until this point he has been unwilling to fully accept and acknowledge his disabilities and impairments, which in turn has been holding him back from moving forward in his life. Predictions from professionals say that he will likely need some level of support for the rest of his life, but everyone's hope is that once he actually sees and accepts his invisible wheelchair that with the right support and guidance he can eventually graduate to invisible crutches that he might just need here and there.
So my big question is HOW and what do we do to help my son understand and accept his invisible wheelchair so he can move forward? I've been unable to work for the past 5+ years just trying to manage his care and fight for the supports that he needs with the school district, and now with the county/government. He already has SSI, Medicaid, etc., and is on the wait list for a waiver. My hope and prayer is that I can get him the help and support he desperately needs so that both of us can have hope for a viable future ahead. Would love any suggestions on what we can do at this point to help my son. Thanks so much!
My son is not technically diagnosed with ASD, however he has a laundry list of other diagnoses, including Social Communication disorder, Tourette's, OCD, GAD, learning disabilities, and severe executive functioning and visual/spatial deficits. The HUGE challenge in his case is that he presents as a young man who has none of the above, yet he is so significantly impaired in ways that create very frustrating challenges for him in day to day life.
I'd like to share an analogy that I have shared with his psychologist and some close friends to help them understand the challenges and frustrations my son is dealing with and how we can get him the help and support he needs in order to have a viable future.
It's as if he has an invisible wheelchair that not only can others not see unless they have enough time to spend with him one-to-one across different settings, but he himself is unable and unwilling to see his invisible chair. He so desperately, with EVERY fiber of his being, wants to be just like every neurotypical 21 year old, of course who doesn't, so I totally get it. When he looks in the mirror each day all he can see is the handsome, talented young man that everyone else sees. He's not driving yet, and not sure when that will be an option, so imagine going out in the world each day with this invisible wheelchair stuck to you. Everywhere you go you constantly run into obstacles and can't figure out why. You look and talk just like your peers and others, you can get up on stage and sing and perform with amazing stage presence and charisma, you can spit out incredible song lyrics, you are articulate, friendly, sociable and outgoing. So what the heck is wrong? Why do you keep running into walls wherever you go....socially, relationships, attempts at employment, when you were in school, academics, and the list goes on. And on. And on.
You have the voice of an angel and incredible musical talents and set your sights on being the next pop sensation. You have the musical talent to do that, but you have no analytical skills, no street smarts, no business savvy, no ability to plan ahead even for 2 hours sometimes. You have a thin skin, significant impulse control, frustration, and emotional regulation issues, not to mention severe executive functioning and visual/spatial challenges. You hear these terms and will easily repeat them to others, but you really don't understand, and don't want to understand what they mean and how they impact you.
As time goes by, and you continue focusing all of your efforts on your music, which by now has become your entire identity, the wheels on your invisible chair begin to start rusting and it's becoming increasingly difficult for you to move about in the world. The harder you try the more difficult it becomes, especially when you are watching all of your peers pass you by. Going to college, driving, getting jobs, living on their own, girlfriends, boyfriends, etc.
Doctors, therapists, specialists, have struggled to understand your complex profile and how to help, but most end up being stumped in the end. In many ways you are almost savant-like. You have a high-average IQ and have single-handedly taught yourself sophisticated music recording software, and have incredible songwriting and vocal gifts. One minute you are sitting at your computer spitting out song lyrics and recording a song, and the next minute you are doing things like washing off your pills that just fell on the floor because they were dirty. Or racking up hundreds of $ in overdraft charges because you can't even pay attention to what you have in your small bank account. Or walking into a screen door you had just closed yourself a minute earlier. Or looking at a tall glass with a crack all the way down the side, and not understanding why it is dangerous to handle or drink out of.
No one aside from your mom (me) and people like your home-based social worker really see the extent of your impairments, not even you. Your mom has to keep a photo journal in order to get doctors, therapists, etc. to believe what she is seeing day to day because you present the complete opposite of how you function.
Okay, that's a MUCH longer analogy than I set out to write, sorry!! Bottom line, it's become apparent to myself and my son's current psychologist, and others working with him that his only hope is to find a mentor/coach that can essentially shadow him from morning to night each day across different settings to help him learn the critical life skills and other skills he will need to even be semi self-sufficient. Meanwhile back at the farm, I'm his emotional punching bag and it's gotten to the point of being unbearable. Unfortunately there are no other family members my son can live with and he's nowhere near the point of being able to function on his own.
Up until this point he has been unwilling to fully accept and acknowledge his disabilities and impairments, which in turn has been holding him back from moving forward in his life. Predictions from professionals say that he will likely need some level of support for the rest of his life, but everyone's hope is that once he actually sees and accepts his invisible wheelchair that with the right support and guidance he can eventually graduate to invisible crutches that he might just need here and there.
So my big question is HOW and what do we do to help my son understand and accept his invisible wheelchair so he can move forward? I've been unable to work for the past 5+ years just trying to manage his care and fight for the supports that he needs with the school district, and now with the county/government. He already has SSI, Medicaid, etc., and is on the wait list for a waiver. My hope and prayer is that I can get him the help and support he desperately needs so that both of us can have hope for a viable future ahead. Would love any suggestions on what we can do at this point to help my son. Thanks so much!
I'm glad you've joined us. Are you in the US? Sending you and your son good thoughts for today.
