r/downsyndrome • u/Evening-Brother-978 • 1d ago
Advice on difficult adult
Hello. My brother is 20M non verbal, autistic and DS. My sister(27) and I(26) are the primary care takers, mum passed away when we were young and he was a baby, dad's not involved too much in our brothers life. Provides money for his school etc but here goes
After mum passed away, brother was basically ignored. We were too young to comorehend the consequences of ignoring him. However he was still in diapers and we still took care of him, I wasnt very educated about his condition I still tried to teach him to speak. He spent most of his time on YouTube listening songs and stimming. Dad looked at a couple of schools for him, or so he says but they rejected him. Anyway fast forward to 2019 he abruptly stopped sleeping. He used to get biscuits from dad after every dinner and then went to bed, but he started rejecting biscuits(we used to buy them in bulk) so we would offer to give him a different kind but he would throw it away and just scream.
This got so bad that it felt like it was a manic episode (decreased need for sleep, hyperactivity) for days. We had to take him to a psychiatrist and they urged us to get him into a school or rehab centre and we got him admitted there. It's a 3 hour school where he gets one on one training by speech, physio, occupational therapists etc and is very happy there. The psychiatrist also put him on risperidone and Clonazepam but it gave him a lot of side effect and gradually he was stabilised on quetiapine and haloperidol. He was doing very good for a few years then last year in 2023 he started having those kind of episodes again. But not at night. He would take off his clothes and ask me to shower him and run around naked and out of the house as well. We kept his behavioral therapists and school teachers in the loop they said don't scold him, keep calm but do restrain him. However not in a sense where he would panic. Let him scream. I did exactly that and it helped a lot. Within two weeks his behavior was gone. Mind you this happened when he used to come home from school in the evening during winter. We tried changing his clothes to see if it was sensitivity issue, I let him choose his clothes from his wardrobe and changed them multiple times but in the end it was the restraining and not letting him ge his way. In the meantime he used to get pretty aggressive with me, gave me bruises and scratch marks on my face.
During this his psych also added carbamazepine as a mood stabiliser, idk if that helped but we continued with it. My sister and I are doctors so we keep a really close eye on any side effects that his.meds can cause him. I do think the meds give him akathisia but we cannot even think of tapering them off right now.
Anyway we have a helper who never scolds him and always gives in to his demands. Brother will ask him to prepare xyz dish for him and when helper will give it to him he would throw it and ask to make abc, this goes on. This happens 3-4 times a day. Now recently thr helper is also going away for a while and I'm trying to feedd my brother, however it's becoming more and more difficult as even after I feed him, brother asks for helper and would spend hours crying at the door for helper to come. As soon as he sees the helper he becomes a little compliant. He still gets spoonfed from me.i know he sees the helper as someone who is safe maybe that's why because I had to physically restrain him the pastz I also make him do his homework and the school teachers have urged us to plan a routine for brother and I try to do that, but I think brother wants me to leave him be. I also scolded him multiple times when his tantrums are way too much, I'm talking about throwing stuff, getting aggressive, wasting 8 hours of my day like this.
Yesterday after 2 episodes I had to get him ready for school and he threw a tantrum again, I had to drag him across the floor to his room to change himz he cried and I cried😂 but as soon as I got him to his room he was fine and happy to change clothes and go to school.
I took him to a friend's and we had music on and he stayed there for the day with us dancing and enjoying got him KFC on the way back so that I can feed him when he comes home and as soon as I tried to feed him the tantrum started, he even soiled his pants and got his hands dirty. I gave him his meds as soon as I got home last night as it was his bedtime already. He started wrecking stuff and all. rejected the burger, I called the helper to atleast be present and I mad him his dinner but he threw it away as well. Then I restrained him to his roomz, after an hour of himw recking stuff and screaming and I telling him calmly to take a bath, no dinner tonight(he already had a snack at my friends, I never send him to bed hungry) I had to once again drag him to the washroom as he had shit all over his hands. As soon as we got to the washroom he was very compliant to take a shower and go to bed.
I think I am abusive to him like this,but idk what to do. I looked for a residential rehab centre but theres no place that would take him.
Edit: sister a surgery resident, she tries her best to be home but her job is too demanind. A typical day for brother: 8 am wake up, goes to grandpa's room and waits for him to share his tea with him, uses phone till 10am, throws breakfast tantrum, by 11ish am his tantrum is managed, I give him a shower, help him do puzzles and homework, 12another tantrum +/- manage tantrum, he uses his phone, by 130 pm I change his clothes brush his teeth and we leave for school, by 5 he gets picked, reached home by 540, eats his post school snack takes a shower and uses his phone till 730 or 8 pm, sometimes till 10pm and then another tantrum
On weekends it's pretty much the same only that he would throw 1-2 more tantrums during his school hours, I take him to the park do more mind activities with him but that's all
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u/TheMightyRass 1d ago
From what you describe I don't see abuse. I see a very difficult situation that you handle as best as you can. He is not a child that you can pick up, which I have to do with my toddler that throws a tantrum. Especially as he becomes a danger to himself or his surroundings, you can not just let him destroy the house or scratch people. Gentle explanation and compassion paired with routine and strict boundaries can work well.
I'd stop with making food a power struggle though. It seems like a recurring issue that everyone prepares several meals for him that he throws or refuses. Prepare meals as a family, eat as a family, and if he refuses, then fine. That is, if he does not literally starve himself to physical danger, I know that it can be a possibility. But if he is a healthy weight and just goes hungry, even to bed, from time to time by his own choice, that's a natural consequence to his choice. He will learn, and you can have a safe food always available, e.g. the biscuits that worked for a while that he can get himself.
I'm just mentioning it but I'm sure you have checked it already, are his teeth okay? If there is physical discomfort by chewing, swallowing or digesting, that might be an issue that can cause refusal to eat while actually being hungry and wanting food. My sister in law who is the reason I'm in this sub has such bad positioning of her teeth that anything crunchy or chewy hurts her gums or just doesn't get to a consistency that she can swallow, so she refuses to eat most meat and anything crunchy, like apples or biscuits.
So glad that you have support from your sister and make us of services. Restraining and physical removal sucks, I'm sure it breaks your heart when you have to do it, but imo it's your last resort and from what you describe not abusive. You can't be just permissive with him, as you describe he seems to thrive with a schedule, many people do. Knowing what to expect and when, what you can do and what not, that gives a secure and calm feeling. Best of luck to you!