Hi everyone, it's been a while since I've posted. Monkey finally got in to see the neurologist, and is now on Clonodine and Prozac. The Clonodine helps him to feel tired and the Prozac helps with his nightly anxiety. Monkey has never been good at sleeping through the night, he has nightmares, and tons of anxiety about people breaking into the house and hurting him and/or us. This has never happened but has been a fear of his for a very long time.
He had an MRI and EEG done and thankfully both came back normal! Yet, the anxiety remains and causes him to have emotional meltdowns, because he is so afraid and frustrated. You see, he knows that there is no basis for his fear, yet the fear remains. He does okay when he first goes to bed because we are still awake, but the second the noise from the living room is gone, he is wide awake and afraid. He feels like we are leaving him when we go to sleep and he is left unprotected, I can only imagine the strength of his fear, I can see it in his eyes and feel it when he holds me so close, it's as if he is trying to melt into me, to escape the fear. I have no idea how to make it better, the meds are helping, but they only take the edge off and make him so tired that even the fear cannot keep him awake. I'm not sure if this is the right way to go, I often feel like a failure because I cannot fix him.
Last night was the first night of his new routine. Bedtime is now 9pm with lights out at 10pm, and we mean lights out. Bedtime used to be 10pm with "lights out" at 11pm but he was keeping his bedside lamp on all night, and we stopped that. The meltdown before bedtime was epic! Refusal to shower, brush teeth, put on PJ's and even refusal to watch TV to settle himself. He wanted NO part of this new routine, but he pulled it together and ended up with lights out at 11pm anyway, of course he got up twice more which made our movie night end at 3am (so much for going to bed early). As soon as the TV went off, he was up and crying uncontrollably, clinging to me and hugging me hard. I let him sleep in my room, and he fell asleep pretty quickly.
People often say "Why do you let him get away with that?" There is no answer that I can give a parent of an NT child who does not understand what my ASD child is going through. They don't understand that he isn't misbehaving, that he hates the anxiety, the emotions he can't put into words, the constant belief that others are better than him because they don't feel or think like him. No matter how I try to explain that I am not "letting him get away" with anything, but simply doing the best I can to make my sweet boy feel as important, special and safe as possible. As parents, we all do our best to raise caring, productive kids. Special needs parents, in my opinion, question whether we are doing the right thing, a whole lot more. We have to decided what therapies, medications, methodologies, routines, schools, play groups, friends, will be best. I often feel alone, like I am on an island and no can or wants to reach me. We no longer get invited to birthday parties, play dates, museum trips with friends, etc..., it's very isolating. People don't understand that Monkey isn't mean or aloof, he doesn't understand how to play with other kids, unless it is video games and even then if the other kiddo isn't playing "right", he melts down...Sometimes, he wants friends, people to play and talk with, but he doesn't know how to enter their world, and he hasn't found anyone who is willing to deal with this for any length of time. Even the little girl across the street has started to call on him less and less.
I guess, while the medication can help him sleep and somewhat and sometimes eases his nighttime anxiety, we haven't hit on anything that can help him connect with people outside of his immediate circle. I am hoping that OT and Behavioral Therapy will help him and me in those areas.
I'm sorry that I babbled throughout this post, I guess I needed to get some stuff off of my chest, I feel better now and hope I haven't bored you too tears. While I know that there are many of you out there who know exactly where I am coming from, when you don't actually see people face to face, and are basically alone aside from your Monkey's and hubby life can feel pretty lonely. Don't get me wrong, I love my life and wouldn't trade Monkey or anything about him for the world. Okay, I am done ranting for now, if you have stuck with me this far, I thank you from the bottom of my heart. If you're new, I hope you get something out of my rambling that makes you feel less alone. I always remind myself, that I am not really alone, I have many friends on social media who are there to listen and they always do. They have my back when I feel like I am losing my mind and honestly, virtual hugs are pretty damned good when you're down, and lonely and don't know what you're doing. I hope this post helps others in some way, I know that writing this blog definitely helps me.
