We have learned some things over the last few months. I took Sam to a new neurologist because his ups and downs over the course of a day were so frustrating and he stopped sleeping again. We attempted a new EEG - BIG FAIL. Sam will have to be sedated if he ever has another one. And since he will also have to be sedated if he ever has his teeth properly cleaned I am hoping we can just make a list of all the things that need to be done and coordinate doctors and dentists for one big party in the hospital. WHat are the chances that will work???
We tried different meds. MASSIVE FAILURE. We also tried cutting meds which was also a failure. Sam's behaviors got to the point where the school had to send me restraint paperwork because his tantrums were so bad they were afraid he might get hurt as they tried to stop him from hurting others or breaking things. He caused some pretty major destruction in the home as well. I starting reading about residential placement - and then hated myself.
I got some ABA hours covered by insurance. They were already a covered service but there were no in-network providers when I first looked into it. Now there is someone local and he gets taken to art and music therapy as well as special needs swimming. Sam doesn't give a hoot about art but it gets him out and since he like ot be on the go, it helps.
We went back to the main med Sam was on before only in a different form (tablet instead of liquid) and a once a day dosage instead of twice. Sma is a much happier camper. He is no less hyper and he still causes damage with his constant dropping and throwing but the aggrssive tantrums are down quite a bit.
In this whole adventure I lost my bed. Sam has been fixated on sleeping a chunk of the night in our bed. For the last couple of years I have done the "right" thing and put him back in his room each time he tries. Usually this meant a few sleepless nights putting him back again and again until he got the idea. Then a few weeks later I would have to repeat the process. THis is the dirty secret of behaviorism - beating the behavior is only temporary. You may never win the battle. WHen Sam was really bad in the fall, he smashed his closet door, broke it and then threw it out the door at me. He is not the incredible hulk - it was one of thoose Ikea frestanding wardrobes (his room has not build in closet). But that was the end of putting him back in his room. He realized his strength and now he does try to kick through his real door (and I think he could if he wanted to). His school wants me to strip his room of everything but a mattress so he can be contained in there but that idea assumes that there is room somewhere else in the house to put everything and there is not. Also, when he is worked up I cannot transport him to his room so it is a silly idea. Now Sam comes to out bed sometime between 11:30 and 12:30 and I go to his with the baby. Unless he has wet the bed and then we get the couch downstairs.
We are very glad to have a happier Sam back but we are still at a loss as to what to do next. His behaviors, while not aggressive, are still very destructive and impossible to manage despite the help of a team of home therapists.