Insight into our world, part 47

Over the last few weeks I have been frequently asked the same sort of questions. The specifics may differ slightly, but the basic premise of the inquiries is the same. Since Mark has been at Sea Harbor, people want to know, "Is Mark happy there?" Was Mark glad to see you when you visited?" "Was Mark sad when you left?" "How does Mark like it there?", etc. All those question get to the heart of our struggle with autism. We just don't know what Mark thinks, how Mark feels, what Mark likes, or if Mark is happy or sad - at least not with any regularity. Mark doesn't communicate these things. And just when you think he is "happy", a major incident of self-injurious behavior could occur. And when you think he is "sad", there is almost no way of knowing why or over what he is sad. That's one part of the emotionally painful world of autism. I wish i could tell each of you who have asked how Mark was feeling, what Mark was thinking, and if he was happy there, but I can't. Yesterday I posited to Cecilia after our visit with Mark that I wish he would tell us, "Mommy, Daddy - don't leave! I won't to go home" (Like a "normal" 11-year-old might). While that would certainly be painful to hear, I know the tears would be tears of joy that we are finally hearing him ... really hearing his thoughts, his feelings .... instead of always wondering, guessing, and trying to figure them out. We pray constantly that he is at peace there, unafraid, and that he knows that he is loved. I sure hope he knows that he is loved.

We had a good visit yesterday - our best yet, I think. Mark seemed glad to see us. He was smiling, laughing, and more affectionate than he had been in our previous visits, We had no incidents of aggression or self-injury. In fact, they said he has a "good" run of three days or so with a drastic decline in behaviors. We played in the big yard, tossed a ball back and forth for a while (till we got the expected "no thank you" from Mark and he just let the ball drop), and then went in and sat in a visiting lounge of sorts for a while and gave him squeezes like he likes, talked to him, got him to sing some songs, prayed with him, and left. You can't see emotions in typed words I guess, but that last sentence made the tears well up again. We so hate leaving him. That long drive back from Orlando is a tough one.

While we are still encountering difficulties with insurance (i.e. they won't pay), the good news is Sea Harbor granted Mark an extra week. Discharge is now set for Thursday, April 23rd. Thankfully, his doctor there ordered the additional days so that Mark could be properly evaluated since his meds changed this week. We are really thankful for that. (Especially in light of the really rough weekend he just had). Our next moves when Mark comes home include the following:

• Talking with the neighbor about his barking dog - a HUGE trigger for Mark's behaviors
• Beginning Mark in a different school setting - Challenger School
• Working with an audiologist to begin dealing with the auditory triggers for Mark (far and away his biggest struggle is with dealing with sounds/noises at certain frequencies ... the vast majority of his behaviors are reactions to noises it seems)
• Implementing the behavioral plan at home that was initiated at Sea Harbor
• Continue his new pharmacological plan with a new psychiatrist

We hope we will see good results from these steps.

Thanks for all the inquiries and for caring about Mark as you do. Thanks also for the prayers. I sat and thought last night how truly humbling it is to know that people - many of whom I don't even know personally - are praying for us. That you would stop what you are doing, think of me and my family, and pray is an incredible thing. Thank you.

Looking forward to the return of my little boy,

Paul