Sunday, June 23, 2013
Ever since my grandson had a fall which resulted in a minor concussion with vomiting, we noticed our son's symptoms have started to return. As he was very stressed over the wellfare of his most beloved nephew. His hygiene has been neglected, he's irritable, his attention has dropped dramatically, and he's been isolating himself. Plus, his smoking has increased. So, my husband (who is the most acceptable to our son when he's like this) approached him about laying out his medication for the week. We also had suspect before this, that he hasn't been taking his full dose of Clozapine. We don't want to challenge him by confronting him about it, nor do we want to cause him a sense of failure by overseeing or taking back the daily medication responsibility. So my husband just let our son sit at the table on his own and put his medication in each container for each day of the week. Then he went over and checked to be sure everything was in one of the containers (as the contents for each looked the same) and gave him a pat on the back and said, 'Well done!' We've since seen some improvements in his symptoms, but we're keeping the tone of the house very low stress right now (we used some suggestions from the Sidran Foundation) and some issues that we would bring to his attention to change (like not completing his chores) we're letting go. Our main goal is for him to have his symptoms come back down before we get back on track with the other goals and issues. We give him a lot of positive feedback when he showers and when he does do something around the house. It's not about the end product, it's about the process and any effort on his part right now. We understand it's hard for him. The one symptom we address is his irritability. We just make a comment like, "Are you feeling ok? You seem irritable." And then he usually will adjust by talking or going into his room for a little while and calming down. Yesterday was better. Today he's helping my husband with a major chore. So we'll see how well he is able to cope. We have long understood that our son's illness has ebbs-and-flows that vary form day-to-day. What do you do when your loved one's symptoms are running high? How do you support them until the illness subsides again?
Friday, February 22, 2013
Michael Schofield (The Jani Foundation) wrote this blog on his site (http://janisjourney.org/index.php?option=com_myblog&show=30-minute-life-the-end-is-not-as-fun-as-the-start.html&Itemid=94) entitled 30 Minute Life (The End is Not as Fun as the Start about the piece aired by Frontline/Hartford Courant “Raising Adam Lanza” on PBS. Another discussion about gun control. Nothing about what it's like to be a parent of a child who has such a severe disorder, a medical disorder, that they can end up hurting others. Nothing about how Nancy Lanza, Adam's mother, was his first victim. Nothing about Nancy being included in the victim count. Michael states in his blog post that, "I wanted to hear from Nancy Lanza." I want to hear her story, too! I want to hear what happened. Because so many families are living with a similar situation with their loved one. They live in fear of violence due to an untreated medical condition that is being ignored by our Health Care industry. A medical condition where there is no accountability for mistreatment from society, officials like most police departments, hospital staff, doctors, mental health staff, or from our schools and colleges. Where is coverage about her side of the story? A story that so many of us share. I'm all for tighter gun controls however that will not stop the problem. Families need to have quick access to intervention with access to longer hospital stays to start treatment. Families need to be an important part of this process. Then, we need to be able to get court assisted treatment compliance and proper continued support for our loved one. I'm not feeling numb about the neglect anymore from the media's one-sided coverage. Now, I'm feeling angry! We need our story to be told!
Monday, February 11, 2013
This is one of the most amazing videos that I have seen that artfully expresses some of the joys I feel about successfully getting the intervention, treatment, and remission of my son's severe brain disorder. I have my son back and we're enjoying a unique relationship that is so special, not everyone could understand unless they were in a similar situation. Please watch this as it can apply to all children as well. And all good parents! http://vimeo.com/11305685 Q&A from StoryCorps PLUS 2 years ago NOT YET RATED Joshua Littman, a 12-year-old boy with Asperger’s syndrome, interviews his mother, Sarah. Joshua’s unique questions and Sarah’s loving, unguarded answers reveal a beautiful relationship that reminds us of the best—and the most challenging—parts of being a parent.