There is no book on what to do for your autistic pre teenager to help them live their best life. I feel lost in how to help our child. Our oldest child was diagnosed " severe ". Love is not enough. And I wish it was enough for us to weather the storms every day. But it simply isn't. Love is not enough to help us thrive, love is not enough to make this less stressful, love is not enough for our family. We need answers, support, respite & honestly a day time nurse would be magical. I feel lost in how to help my child who is past the age where everything he does is cute to bystanders. The bystanders that assume we must be overwhelmed with endless support, help & guidance we constantly receive. I am lost on how to navigate his day to day at times. Manage the rollercoaster of emotions that terrorize our entire day at times. I am lost on how to keep myself safe or anyone else when our oldest son meltdowns because he is bigger now. But now that I think of it there was no book on what to do for your autistic child, when the younger years were part of our story. We didn't thrive in our oldest son Avery's younger years. We struggled enormously. And yes I know we survived it but I would like to experience more than endless survival. & just saying if there ever was a book on what to do, how to properly survive all the chaos in this life & thrive more effortlessly. I'd buy that book. I probably wouldn't learn anything. But maybe for a moment I wouldn't feel like such a failure or maybe I'd feel worse. It's a gamble at this point. Let me tell you I am "momed " out. This is no joke. I am at my max of what I can handle with " caregiving ". I cringe when I hear the word " mom " come out of any of my kids' mouths. I didn't before, but for the last four weeks I cringe. I need to tell you something of high importance. I'm burnt out. Like burnt out to the point where I can't make meals, I can't hold conversations with adults & I'm shutting down. The other night I cried. Soaked 4 entire pillows before bed. The thing is it was more than me just crying, I was sobbing uncontrollably. I felt like I simply couldn't breathe. I felt like every emotion I had held in was coming out of me all at once like an erupting volcano. I got nothing left for family, friends, husband and our kids. I am irritated. I am overwhelmed. My patience for anyone's incompetence & bullsh*t is non-existent. I do not have my life together, I am unraveling. I washed the same load of laundry 4 times because I kept forgetting to put it in the dryer. I tried to make a casserole & I went to boil the noodles & I poured in fruit loops instead. I am sleep deprived, emotional & strongly failing motherhood. Last week was rough & we were in pure survival mode. & we are going into this week having the same vibe. Real talk. There is no recovery time coming my way. No one is stepping in to help with all things autism. I know that & that is what makes this journey so incredibly sad. Maybe you are reading this & might feel the same way. Maybe you live a life similar to ours & understand the reality & severity of caregiver burnout. The seriousness of being so burnt out that getting out of bed is becoming a chore. I feel lost in how to help my child who is now a pre-teenager. I feel as if I am failing at everything at once & can't get a handle on everything. There is no book on what you should do for a caregiver when they are experiencing caregiver burnout. No one seems to care till it's too late. No book is needed, if I am being honest. What is needed is people who show up without being asked or prompted. The people who show up with coffee, meals & all the things. The people who show up with more than love because they know love isn't enough. I have yet to find that on this journey of being a caregiver. Those people who show up when the sky is falling. My sky fell and I am slowly dying under it.
Posted by journeyforavery at 2023-01-24 15:41:12 UTC