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I have been navigating systems on behalf of my children, who experience mental and behavioral health challenges, since 2005. My son is now 21 and we still face challenges often, it just looks…different. With his permission, I can share that we have navigated counseling, psychiatric care, day treatment, inpatient care, residential, juvenile justice, DHS, school needs, and emergency services. It was all SO much for both of us! Navigating on his behalf is what brought me to the work of supporting other parents. Now that he is older, supporting navigation is a whole new challenge! He experiences suicidal ideation, and reaching out when he is struggling is a real challenge. Navigating the adult system feels like a whole different world. How has your experience been? Have you had any successes or have any tips you might share with other parents?
As the mom of a young adult on the autism spectrum, I can relate to your journey. Supporting our kids changes shape as they grow up and some have mainstream achievements like driving or holding a job. My son lives in his own apartment and owns two kittens. He even lives in a different state. But we are involved daily, even hourly in supporting him. He texts throughout the day about his concerns about his kittens, how to cook dinner, how to communicate at work and also, his feelings of isolation and depression. We have two-hour dinners (on Zoom) on Wednesdays and Sundays. The support he needs is a shadow of what he needed as a kid, and at the same time, we are monitoring his safety and comfort 24-7.
As someone who is attempting to navigate my own support as an adult I am interested in any tips/tricks because I am failing at my own support myself!
Solidarity to you all. We began navigating systems in 1997, and boy oh boy has it been a journey! I think we can all say that we own the title of case manager when it comes to our own children. For us, adult services has been much easier to navigate, but I believe that has a lot to do with the fact that mom is now a seasoned veteran advocate, and because there just aren’t as many programs involved. My son has complex communication challenges, so one of the most important things we’ve done since he became an adult was making sure that I have the legal right to speak with his providers, and to facilitate the organization and management of his care. The school system was extremely traumatizing for my son, so adult life has greatly reduced the amount of stressors he has to deal with. Like you Suzanne, I also feel I am a much better advocate for my son than I am for myself. It feels good to know that we can support each other on this forum. Blessings to you all!
Thank you for sharing parts of your stories, Thank you for the tip Jeni with ensuring that I make sure I can legally speak for my kiddo as he is an adult (when) He is 16 and I have no real knowledge how to proceed into this transition. I wish there was more of a manual and a how to guide but I realize it is with so many nuances and different aspects of individual families needs that its really based on our own needs and desired outcomes. I have just comforted myself by telling myself that I blindly got us this far and that we will be okay lol
I am someone who needs advance notice, so this only comforts me enough until I stress out again lol
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