I seem to be losing my place as an autism blogger. Life is busy. There is so much to do. More than I can do, definitely. I'm so tired that I can't think, but then there is still more to do, and it's mostly reflex and reaction- living life on autopilot- and when I'm not go-go-going, I'm slouched on the couch wondering if I have the energy to watch a show, still fielding questions on whether we do or do not have an attic (seriously, we live in a mobile home), wondering where in the hell this sudden obsession with attics came from, and yelling at Alex to stop jumping on the effing bed. Goofy's counselor wants me to spend more time with him, Goofy's teacher marked on his report card that we need to do homework more frequently, and Walter joined football. Right now, as much as I miss "writing," the thing in life I envy most is my boyfriend's mom's ability to nap at 4pm.
I know it's April, the time for Autism Bloggers to be blogging autism. I'm failing miserably at being online, but I have other things to share so that maybe you can work on them in your community.
Alex wanders, and I am terrified. I started with the Jefferson County Sheriff's Department. It took me a while to find someone to talk to me, but when I did, the guy was great. I asked if there was a way for me to register Alex and if there wasn't how to make one. He said that there is no database to register our kids, and no way to make a database because they have to communicate through dispatch quickly. Any notes that are added to our file have to be short. Very short. He directed me to our Zone Commander to talk about adding notes.
Since we couldn't make a database, and police officers are not miracle workers, I asked him about switching it around- what can we do to help the parents? How can we help them know what to do and to help them be prepared? This changed the entire conversation, and the man was exploding with ideas and helpful suggestions. He is willing to come to Alex's school and offer Comprehensive Parent Training on wandering. I gathered up Bacon and Juice boxes' Wandering Information Sheet and some additional questions and sent it to Alex's school. The principal and the teachers will work together to use those to make a unique form that will work specifically for our kids. They will send the form to the officer I spoke with to review to make sure that it has all of the information that the police department needs.
I called the fire department to see what we could do about alerting them to special needs, which could cause some unique challenges for them in the event of a fire. Not only is Alex non-verbal and unpredictable in how he would react to a fire, we have added locks and gates and his window is covered with lattice to keep him from going through the thin glass. Then there is the problem of what happens when they get him out? I have to have my hand on him at all times or he will run. How can they know that? The answer is careful coordination of first responders.
The Northern Jefferson County Ambulance District has implemented a STARS program with Cardinal Glennon Children's Hospital. As soon as I saw their announcement, I had to call our ambulance district. Joachim-Plattin is in the planning phases of the STARS program, she was very happy to talk to me about it, and to hear my concerns. In the event of a fire, a tot finder sticker (that is no longer a sticker but uses a suction cup to attach to the window so it can easily be moved with the child) will let the fire department know to search the room carefully. Once he is out, he is handed directly to EMS who would have his information in the STARS file and will know that he is nonverbal, that he has a history of asthma, that he wanders. They will not leave his side. If something happens at school, EMS will have his information even if I'm not there because I can make sure the school has his number.
But, then there is the problem of what if I am not there to give them the number? I called our Zone Commander to ask about the notes we could add to our file. My specific question was if we could add a note of "Wanders" and the child's STARS number so that the information goes out with the 911 call no matter what the emergency is. The man went nuts. He took not only Alex's information, but Goofy's too. I didn't think about needing to register Goofy because he doesn't have autism, he just has zero social skills and thinks since he knows someone's name he can go in their house ...or car ...did I tell you he tried to hop a church van? Lord, that child will be the death of me. Anyway, I'm not sure what he's doing with the information since there is no database and no way to create a database, but he will definitely be making sure his men know about my boys- they patrol here often. He is very excited about the parent training and the STARS program and wants to be kept in the loop on all of it.
He has some great information on how they would conduct a search. Even without an Amber Alert being issued, they have the ability to send out a Code Red. The Code Red will send an alert to every smart phone within a specified distance to be on the look-out for a child and their description. They can increase the distance as needed and after an amount of time will notify the media.
There is one part of our conversation that still has me laughing. Not in an OMG, that is hilarious way, but in an OMG, we are definitely not done raising awareness kind of way. I have nothing but respect and gratitude for this man, and I mean no disrespect at all, I truly appreciate the level of alarm in his voice when he told me that I should tell Alex to not wander into the woods because there are bad things there that will hurt him. He is horrified by the thought of what could happen to Alex in the woods and how difficult a search would be, and rightly so, but there are a thousand things I would love to just tell Alex. I'm just at a loss. I can't explain, I don't know what to say, so I make another phone call. Alex's school is in our Zone. Very soon, before the end of this school year, the Zone Commander and his team will be invited to Mapaville to tour the school and meet the kids.
I'm not sure what to do next, but I'm sure we'll think of something.