Observation

Marcus is entering Day 7 at Loma Linda Behavioral Medicine Center. His meds are being adjusted, he is much calmer, appears quite content now, and he has managed to sleep three nights out of the last seven.

Our visit last night forced us to ask a question. Marcus was rolling around on the floor, jumping up and down on his bed, running up and down the length of the hallway. Every once in a while he would lay on the floor and just chill out for a few moments. It was obvious that he felt quite at home. That forced us to ask a question: What does home mean for Marcus?



Why are we taking care of him? At Loma Linda, he has 24 hour care. If he stays up all night, there is someone to watch him. He has contact with people, and since he gravitates toward people in a vaguely social way, the staff and other patients fulfill that need for him. We realized that we are wrong to talk about "placement" in tones of fear and doubt on Marcus' behalf. He adjusted just fine in a few days to this new setting with little contact with family members (1 hour per day during visiting hours).

When we talk about placement, we need to speak about our inability to keep him safe, to watch him 24/7, to monitor his vital signs, to adjust his medication thoughtfully and professionally, in fact, we need to speak about our inability to really give him the kind of home he needs and deserves.

A New Year

Marcus is currently at Loma Linda Behavioral Medicine Center for a 3-day observation. We will keep you posted. When I have more energy, I might try to describe what that 12-hour emergency room/referral process was like. For right now, I'm going to enjoy New Year's Day with the rest of the family. Happy New Year.

Thanks to friend Karen and cousin Monica who supported us these last few days and encouraged us to get help.

Contrary to the New Year

Marcus stayed up all night on December 30. And by "stayed up" I don't mean trying to be up late and watch tv like other kids. Staying up = no sleep from when we picked him up at 8pm on Sunday night from his dad's house (where he spent a few days over Christmas break with his brothers and sisters) to now, 10am on Monday morning. Marcus' "stay-ups" are accompanied by long, loud wailings, stomping up and down the stairs, slamming doors, turning lights on and off.

It's a miracle the other kids sleep through this. But they do. We stay up all night, or take shifts (which is a miserable way of saying I love you to your spouse) and keep Marcus from breaking windows, take him to the bathroom every hour, try to keep him as quiet as possible so others can get rest.

So, now we are heading into New Year's Eve exhausted.

Kim Stagliano - blogger

Meet Kim Stagliano. Check out her blogs relating to her children with autism. Check out her career and upcoming novel. She's funny and insightful.

autism - what is it?

For everyone who has never known a person with autism, and for everyone who has and does, I'd like you to meet Marcus. Marcus is currently 12 years old and living in southern California. He is non-verbal, which means that he does not speak or use language as we do, uses limited sign language, such as "more," and responds to verbal prompts and limited signs, such as "get up."

I live with Marcus. I am his stepfather. I have been keeping a journal of the opportunities and challenges, the trials, tests, and stress, as well as the joy and celebration that I have experienced since I met Marcus and began assuming responsibility, along with his beautiful mother and three brothers and sisters.

On a weekly basis, or as therapeutically necessary, I'll be posting accounts of living with Marcus, of the resources we are currently in search of, of the goals we have as a family.

This blog is one way that I plan to cope with the challenges and opportunities of life with a child who is severely autistic. I think, along with this blog, I will start by calling Marcus "differently abled." The truth is that while, Marcus has no apparent "gift" as is often associated with autism (a gift for numbers, a gift for music), we don't really know what Marcus is capable of.

That being said, I will not continue to look at Marcus' skills and communications in terms of deficit, but in terms of assets. When you're cleaning up a bed that's been wet for the second time in the same night, or when you're restraining Marcus from hammering a glass window pane with his fist, it can be a challenge to see what his assets are. It's often the case that you think "Why? Why do I have to do this?"

This blog is one way that I can be accountable to a larger community for how I view Marcus, how I care for Marcus, how I endeavor to make meaning out of life with Marcus.