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transitioning to adulthood while still sick


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My son is 20 and has been sick for 8 years with PANS, Lyme/CO's, and immune deficiency. He has no real desire to become independent at this point and shows no initiative toward it. He has not graduated high school or GED. He is just standing still in time. He is still undergoing intensive treatments and I think he is waiting to get better before he starts his life. I think there is an all or nothing thought process at work where he thinks- I am sick so i won't do anything. When I am better I will do things for myself.

 

What are other folks doing with young adults who are still very sick? What are your thoughts about what will happen with these kids if they don't recover? I am trying to imagine starting to plan for a future where he doesn't recover because its already been 8 years of intensive treatment and he is not recovered. We are applying for SSI this year but beyond that I am not sure how to plan for the future and how to begin the conversation about transitioning to some other kind of life.

 

He sees a therapist twice a week and they are not working on these issues. He had suicidal ideation last fall so I think there is a fear of not rocking the boat too much or he will fall into depression again.

 

What are some possible steps forward here?

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This is just an idea, but we are on a wait list to work with Amy B. Scher, who wrote the book This is How I Save My Life. She is an "energy therapist" who was recommended by our Lyme doctor several years ago. She focuses on energy, emotional healing from trauma, thought processes, attitude, etc. My ds15 and I got on her wait list 9 months ago - at the time she estimated a 6 month wait for us. I had talked to her 4 years ago, when she had no wait list, but I was skeptical at the time. The more I learn, the more convinced I am that she will be an important component of healing for us. She has a website and FB page you can check out, and has an online group she runs (which I believe has no wait list). She was very ill with Lyme as a teen/young adult, so she gets it.

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