Melissa in Australia Posted November 1, 2016 Share Posted November 1, 2016 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
kbutton Posted November 1, 2016 Share Posted November 1, 2016 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
chiguirre Posted November 1, 2016 Share Posted November 1, 2016 I'm going to be brutally honest. You must not take your kids out in public if their behavior is this difficult. Your life is hard now, if someone calls the police it will be much harder. I say this from experience albeit with only one kid whose behavior is this extreme. I do not take GW out in public without dh. If worse comes to worst we can physically subdue him between the two of us and Trinqueta and Geezle are capable of stepping back and remaining calm (that's a big deal for Geezle and he has only been able to do that for the last couple of years). It's not worth getting into legal problems if GW touches (or worse, hurts) someone or damages something. What are your plans for the future? I'm sure you know that you can't keep this up indefinitely. My personal experience is that while there are huge waiting lists for community based services, the process for residential placement of someone who is a danger to himself or others is more streamlined. We prequalified last year after GW injured me and we can now call our county's mental health and mental retardation agency immediately in case of emergency and they will find him a placement. This is a tremendous load off my mind. I still worry about the what-ifs but if something happens we can place GW and keep the other kids at home. If you live in TX, pm me and I'll explain the process we followed. Of course, the other 49 states do something else and you'll have to investigate locally. It's also a good idea to know where your mental health ER is. It will almost certainly not be at the nearest hospital. Ours is an hour away. A crisis is not the time to have to start calling around. BTDT, lucky I had a friend to do the legwork while I was dealing with the immediate crisis. 10 Quote Link to comment Share on other sites More sharing options...
Isabella Posted November 1, 2016 Share Posted November 1, 2016 You're right that it is a trauma. Hugs to you and yours. You are an amazing parent to be just dealing with all that. 😘😘 Quote Link to comment Share on other sites More sharing options...
mominco Posted November 1, 2016 Share Posted November 1, 2016 :grouphug: Quote Link to comment Share on other sites More sharing options...
Guest Posted November 2, 2016 Share Posted November 2, 2016 I don't even know what to say. It is indeed a hard life, and I don't have anything to offer you to make it better. :0( Quote Link to comment Share on other sites More sharing options...
KungFuPanda Posted November 2, 2016 Share Posted November 2, 2016 Your life is so hard. You deserve to vent. This isn't mere whining. This is seriously hard HARD stuff. Caregiver fatigue is real. Can you access respite care or qualify for a health aid? I have a child with muscular dystrophy. It's HARD, but nothing on the level you are describing. I hope you get a long string of good days soon. Quote Link to comment Share on other sites More sharing options...
MamaBearTeacher Posted November 2, 2016 Author Share Posted November 2, 2016 Thank you everyone for your hugs and support! it means a lot to me! The reason I did not want to talk about respite is that it is not easy to arrange and can often make me more tired. I know how the services work where I live. Basically I have to hire someone myself and then I am reimbursed afterwards. I have been looking really aggressively for someone to come for an afternoon every week during business hours so I could make phone calls. i will train them and show them what to do. Most of the people I have found were people in their twenties and they found full time jobs in other fields before they had a chance to work with me. Some, I emailed for weeks and then they figured out that it would take them a long time to get to my house. Some sounded scared to work with my kids. There was an older woman who was very enthusiastic to work with them and came for an interview. I was a bit concerned about her stamina but she was extremely enthusiastic to work. I Liked her too. She had a lot of good qualities. But halfway through the interview DS15 had a very scary and loud fit. She made a hasty retreat, told me she would call me, and I never heard from her again. I felt really sad that day. We have had respite workers in the past. I liked them but They were not fast enough for the boys and each time they came the boys would break or destroy at least 1 thing. And I always had to do a lot of care taking anyways so that meant I was running up and down stairs a lot. anyways I am still looking but I have not found anyone. The boys go to a program for a few hours 2x a month. it is expensive and I usually spend the day cleaning and organizing. DH is home in the evenings so I can do grocery shopping and help my other son with his homework and spend time with him. I try to go for walks. At about 8:30/9:00 I crash and watch videos online or read articles or sometimes read books until bed. I LOVE homeschooling my sons!!! They are very bright despite all their problems. On their good days they can sit for hours at a time while I read to them or read on their own while I turn pages. DS12 is very hyper all the time but can sit hours and study something as complicated as Russian grammar very quietly. His breathing pattern changes and his digestive problems often calm. We are currently reading the last Harry Potter book (which I think is the best one) and they love it! If I sent them to a special needs school they would probably be taught about things like the seasons and farm animals. They would not be able to handle their outbursts and call me to pick them up and take them home when they were at their worst. Homeschooling is the best solution for my boys though another child might thrive more in a different educational setting. Mostly I wrote my post because I am sad and lonely and sad for my boys and frustrated with their lack of health. I woke up DS at 2 pm. I found out that he did not fall asleep till almost morning. I spent all afternoon feeding him to make up for the meals he missed sleeping. He has been in a good mood all day/evening. I hope he does not go to bed too late and that he falls asleep. 4 Quote Link to comment Share on other sites More sharing options...
Janeway Posted November 2, 2016 Share Posted November 2, 2016 (((Hugs))) Quote Link to comment Share on other sites More sharing options...
mamiof5 Posted November 2, 2016 Share Posted November 2, 2016 I read this earlier and have been thinking of you since. Praying today was a much better day! Quote Link to comment Share on other sites More sharing options...
creekland Posted November 2, 2016 Share Posted November 2, 2016 I hope today is a good day for everyone. :grouphug: Quote Link to comment Share on other sites More sharing options...
Lizzie in Ma Posted November 2, 2016 Share Posted November 2, 2016 :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
chiguirre Posted November 2, 2016 Share Posted November 2, 2016 I'm very sorry about the respite struggles. However, before you hire someone yourself, you need to know if they are covered by worker's comp and who would be liable if they are injured. I stopped using private respite entirely after GW injured me because we did not want to run the legal and financial risk. OTOH, drop off services cover their workers. GW's day program took care of a worker's comp claim he caused and we didn't have any legal repercussions. Public schools are also responsible for their worker's safety so you won't be sued if your child hurts someone while in their care. (I realize just how horrible these considerations are. But, this is your reality and mine too. You can do this, but you need to change up some things so your life is sustainable long term and your neurotypical child has a safe, stable environment too.) :grouphug: 3 Quote Link to comment Share on other sites More sharing options...
Anne in CA Posted November 2, 2016 Share Posted November 2, 2016 I am just so, so sorry for your bad Halloween. I thought about your post a lot and felt like I wished I had something helpful to say, and waited to respond in case I thought of something, but I did pray and I prayed again this morning. I'm just sorry. Quote Link to comment Share on other sites More sharing options...
TCB Posted November 2, 2016 Share Posted November 2, 2016 :grouphug: You are an amazing mom! I hope things get better soon and you have a long period of good. Quote Link to comment Share on other sites More sharing options...
J-rap Posted November 2, 2016 Share Posted November 2, 2016 Wow. I'm so sorry your life is so difficult. I know you're not looking for advice and I don't have any. Just know that people here recognize how extremely challenging your life is and what an amazing, loving mother you are. Quote Link to comment Share on other sites More sharing options...
zoobie Posted November 2, 2016 Share Posted November 2, 2016 :grouphug: Quote Link to comment Share on other sites More sharing options...
MamaBearTeacher Posted November 3, 2016 Author Share Posted November 3, 2016 Thanks for all the support! It really makes me feel less lonely. My oldest son is still very congested and I am hoping his behavior will improve in a few days. There were some good things and some bad things today. I keep hoping for just good. I keep hoping for health. 2 Quote Link to comment Share on other sites More sharing options...
MiMi 4under3 Posted November 3, 2016 Share Posted November 3, 2016 Your strength seems limitless to me! I pray you have many peaceful moments alone, and with your boys as well. :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
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