Safety Dance

My husband and I are going on a vacation to Las Vegas soon (it's ok to be jealous) and I have been preparing and planning as usual for this trip. Both boys are going to be watched by my mother in law and sister in law plus a teenage niece. So part of my planning involves writing out our typical routine for bed time, nap, meals, just the usual stuff that goes on around here. In my instructions I wrote about "safety". Now these are two women who have raised 6 children between them so I know they can keep a kid alive and well fed. The difference here is keeping a child with autism safe. Kids with autism frequently walk (or run) away from their caregivers, typically to go inspect something they find interesting or just to run like a bat out of hell, because why not? Another layer to this problem is that if they get lost, they typically don't answer to their name and have a difficult time communicating (even more so when non-verbal) that they need help. 
Let me give you an example. Martin and I decided to take E-man and Little Buddy on a walk. We packed them in the stroller, put the dog on a leash and we were on our merry way. 
We came up behind a park by our house, both Martin and I were distracted by the dog because he managed to tangle himself up around the stroller. Meanwhile E-man vaulted himself out of the stroller and ran right into the street, in no less than 8 seconds. While we were distracted with the dog, he saw the park and not knowing that there was a curve in the sidewalk to get there he just went the most direct route he could see and went for it. Martin dropped the dog's leash and ran after E-man and caught him and thankfully there weren't any cars coming. You know that feeling when you've narrowly avoided getting in a huge car accident but the adrenaline is still pumping, your heart and chest actually hurt and all your muscles are tense? Yeah, that's how it felt when that happened. 
So if two of us are with him, are extremely aware and vigilant about keeping this boy safe, and things like this still happen, you can imagine that leaving them with other people is stressful. 
My "safety" section ended up being an entire page of information. I wrote about what to do if they take them to various places and what we do around the house like locking all doors (yeah we aren't trying to creep you out when you visit and we lock the door after you walk in), blocking the side of the house that has a gate to the outside, etc. 
While I was writing all this out I realized how much of my time and energy I take to think about protecting E-man and how this gives me great practice because I'll be doing the same things for LB. 
I've been accused of being paranoid for various things in my life, usually when it involves germs (can't help it I'm a nurse). However I've also been described that way when I started thinking something was amiss in E-man's development. When it turned out my suspicions were true I decided I need to trust myself on how to raise my kids. It can be hard to convey the anxiety and preparation it requires to take the kids anywhere, especially by myself because of the flight risk E-man can be. So what can you do to help if you are hanging with a family who has a kid with autism? If you are making plans it is always easier for us to hang out at our house and we can enjoy your company much better, and we are very grateful for accommodating us. If we are out at a social gathering, offering to run around with (basically follow) E-man, it can be a nice break. Friends and family have been really supportive and we've had many successful gatherings. 
It may take a little more work, but I'm determined to keep doing things I enjoy. So I have to let go a little and trust the people around me to take the reins when a break is needed.  It's definitely a work in progress but you know what? I'm still packing my bags for Vegas!

The Unknown

Little Buddy and I are nearing our last appointment with the Infant Start study at the MIND Institute. This is the study that does parent training for children at risk for autism. I feel like it was a positive experience for both of us and has helped LB increase his ability to use body language and verbal skills to communicate. When we first started I was hoping it would be some kind of magic bullet that would prevent him from developing full blown autism. That was probably naive of me, but honestly I was desperate. In hind sight I think it probably helped him not regress further, which by itself makes doing the study worth it. I am relieved to be done, driving a total of 2 hours and 40 minutes for a 1 hour appointment every Tuesday was beginning to take a toll. The timing of everything is actually working out well, he got his official diagnosis a few weeks ago, thus making him eligible for more therapy hours at home. The extra hours will start pretty much right after we are done with the Infant Start study. 
Having done this process once before with E-man makes this time around a little easier. We were completely expecting the diagnosis and were able to bounce back much faster than the first time. 
The most difficult challenge is the unknown. I suspect it's the same for all parents. Will they be happy? Will they be successful? Will they eventually be ok with out us? 
Right now there is an added layer of stress because of layoffs coming at my husband's job and uncertainty with my schedule for work due to some staff changes that were very unexpected. I know we will be fine, it's the not knowing that kills me. In any situation, the anticipation of a problem or change is excruciating for me. I've always been a planner, have had back up plans for potential problems that may arise in any given situation. 
I think this time in my life is really testing my ability to cope with the unforeseen. It's definitely most stressful regarding the kids. 
Will they be able to have conversations, make friends, poop in the dang toilet?! It's overwhelming at times and I get tired. I am hoping over time my ability to cope with the unknown grows. Until then, I'll be taking it day by day, week by week.