Teaching3bears Posted November 13, 2022 Share Posted November 13, 2022 He had a really rough day among rough days lately. He has so little control over his body and his actions, and such deeply debilitating sensory issues. Lately they have been so bad. It’s so hard and often unsafe to go anywhere and it is so so hard to stay home and watch him. It’s so hard for others to be around him so it is very isolating. What is especially bad is the total lack of happiness, the agony and suffering in such a nice boy. He feels very bad about his actions and the pain it causes everyone else. It’s such a weird and difficult life I lead. I tried to reach out to others IRL but it seems everyone has social plans which somehow makes me even more sad while I watched him scream for an hour and then watch him rip paper and chew it and I had to take it out of his mouth. I wish he felt better and was free of such debilitating sensory issues and whatever is causing him such pain. I wish the people who have pulled away from us all find the strength and will to love us again. 1 48 Quote Link to comment Share on other sites More sharing options...
Harriet Vane Posted November 13, 2022 Share Posted November 13, 2022 Praying for you both tonight. 4 Quote Link to comment Share on other sites More sharing options...
ScoutTN Posted November 13, 2022 Share Posted November 13, 2022 Praying for comfort and relief and peace. 3 Quote Link to comment Share on other sites More sharing options...
fraidycat Posted November 13, 2022 Share Posted November 13, 2022 Big, big hugs for both of you. 1 Quote Link to comment Share on other sites More sharing options...
Eos Posted November 13, 2022 Share Posted November 13, 2022 Holding you both in the Light. 2 Quote Link to comment Share on other sites More sharing options...
East Coast Sue Posted November 13, 2022 Share Posted November 13, 2022 Praying for both of you. Many gentle hugs. 1 Quote Link to comment Share on other sites More sharing options...
TheReader Posted November 13, 2022 Share Posted November 13, 2022 praying for him, and for you; that is isolating and exhausting. I'm praying all of your needs are met, his and yours. Big hugs. 3 Quote Link to comment Share on other sites More sharing options...
pinball Posted November 13, 2022 Share Posted November 13, 2022 I’m praying for you all 1 Quote Link to comment Share on other sites More sharing options...
Catwoman Posted November 13, 2022 Share Posted November 13, 2022 Praying for your son and for you. 1 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted November 13, 2022 Share Posted November 13, 2022 sending positive thoughts and huge huge hugs 2 Quote Link to comment Share on other sites More sharing options...
Hilltopmom Posted November 13, 2022 Share Posted November 13, 2022 I’m so sorry. I’ve been there with a non verbal child in pain screaming all day long (for years). Are you able to give any meds that bring relief?- we had best luck with neurontin (best they could figure was nerve pain of some sort) and klonopin to sedate him when it was the worst. thinking of you 1 Quote Link to comment Share on other sites More sharing options...
Kassia Posted November 13, 2022 Share Posted November 13, 2022 sending hugs and loving thoughts 1 Quote Link to comment Share on other sites More sharing options...
Teaching3bears Posted November 13, 2022 Author Share Posted November 13, 2022 9 minutes ago, Hilltopmom said: I’m so sorry. I’ve been there with a non verbal child in pain screaming all day long (for years). Are you able to give any meds that bring relief?- we had best luck with neurontin (best they could figure was nerve pain of some sort) and klonopin to sedate him when it was the worst. thinking of you Did the Klonopin make him sleep? Did it have side effects? How long did it take to work and for howling was it effective? Quote Link to comment Share on other sites More sharing options...
footballmom Posted November 13, 2022 Share Posted November 13, 2022 This sounds so hard. Praying for you both. 1 Quote Link to comment Share on other sites More sharing options...
Junie Posted November 13, 2022 Share Posted November 13, 2022 Prayers and hugs. 1 Quote Link to comment Share on other sites More sharing options...
happi duck Posted November 13, 2022 Share Posted November 13, 2022 Many (hugs) 1 Quote Link to comment Share on other sites More sharing options...
NorthernBeth Posted November 13, 2022 Share Posted November 13, 2022 You're in my thoughts and prayers. It is a terrible thing to go through. 1 Quote Link to comment Share on other sites More sharing options...
popmom Posted November 13, 2022 Share Posted November 13, 2022 I will pray. That’s so hard. 1 Quote Link to comment Share on other sites More sharing options...
Hilltopmom Posted November 13, 2022 Share Posted November 13, 2022 1 hour ago, Teaching3bears said: Did the Klonopin make him sleep? Did it have side effects? How long did it take to work and for howling was it effective? Yes it would put him to sleep. No other side effects I don’t think but he was very disabled so it was hard to tell. We used it as needed. I know other families who used different sedatives. The neurontin and something else I’m blanking on now were preventatives taken daily. 1 Quote Link to comment Share on other sites More sharing options...
Anne Posted November 13, 2022 Share Posted November 13, 2022 I’m so sorry - this sound beyond incredibly difficult. I’m praying for you, Teaching3bears! Anne 1 Quote Link to comment Share on other sites More sharing options...
marbel Posted November 13, 2022 Share Posted November 13, 2022 I'm so sorry. Praying for you and your son tonight. 1 Quote Link to comment Share on other sites More sharing options...
Corraleno Posted November 13, 2022 Share Posted November 13, 2022 I'm so sorry. Sending gentle hugs to you both. 1 Quote Link to comment Share on other sites More sharing options...
TravelingChris Posted November 13, 2022 Share Posted November 13, 2022 Praying for your son and you. 1 Quote Link to comment Share on other sites More sharing options...
gardenmom5 Posted November 13, 2022 Share Posted November 13, 2022 I'm sorry, I have no advice. dudeling is happy to be a hermit . . . I went through a time with him he couldn't be alone with other kids and I had to watch him like a hawk. It's very isolating. - when I saw he will rip/chew paper - have you ever tried karate break boards? (reusable. they're very easy to put back together) different colors are different levels of difficulty. dudeling went through a period where he was using them all the time (they can be very loud, which I think was part of the appeal for him.). But breaking them definitely helped with his anxiety. 1 Quote Link to comment Share on other sites More sharing options...
MercyA Posted November 13, 2022 Share Posted November 13, 2022 Praying for you all. ❤️ We love you. 2 Quote Link to comment Share on other sites More sharing options...
saraha Posted November 13, 2022 Share Posted November 13, 2022 Praying for you 1 Quote Link to comment Share on other sites More sharing options...
katilac Posted November 13, 2022 Share Posted November 13, 2022 That sounds so hard. I hope your people find a way to love and support you both. 1 Quote Link to comment Share on other sites More sharing options...
Kareni Posted November 13, 2022 Share Posted November 13, 2022 Sending sympathetic thoughts for you both. Regards, Kareni 1 Quote Link to comment Share on other sites More sharing options...
Mom_to3 Posted November 14, 2022 Share Posted November 14, 2022 I am so sorry! That sounds incredibly hard. Keeping all of you in my thoughts! 1 Quote Link to comment Share on other sites More sharing options...
Catwoman Posted November 14, 2022 Share Posted November 14, 2022 Still thinking of you and your son and praying for you guys. 3 Quote Link to comment Share on other sites More sharing options...
Quarter Note Posted November 14, 2022 Share Posted November 14, 2022 @Teaching3bears, you and your son are in my prayers. Even while your frustration is so evident, your beautiful mama heart is shining through. You are a blessing to your son. My heart hurts for your good boy. I wish we could all get to know him in person and let him feel the love of this extended community! 3 Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.