Like I said in my first blog post – I’m “not completely sure what I’m doing with this yet…” – and that still holds true. I do believe the most honest, thoughtful and real stories and writings just happen organically. Much like a conversation with an old friend when you just pick up where you may have left off so many years ago. Or when all of a sudden on a Friday night you have 8 or 9 neighbors sitting in a driveway having drinks and eating takeout. That’s the kind of stuff that is real. That is what I hope you will come to find out is that this is real and that very little effective planning goes into anything in our world.
And with that, that is how we live in our household – especially with Shane. Nothing is planned and if it is, it is going to be nothing more than a guide for us in that moment. One of the many many hard things about having an Autistic child, especially a low-functioning non-verbal child, is that you do everything around them and their needs. Over the years we have tried to not be that way for our girls but it doesn’t always pan out. Brooke and I would make sure that one of us was always with Shane when we could be and that other was available to do things with the girls. This was always tough because we have never done a lot of things like trips, outings, shopping, etc as a whole family. And, when we did (and still do today) we plan accordingly: We get Shane’s noise canceling headphones which he just started using more this year (yay). We have a plan in place if he acts up and gets “fussy”; this usually means we can bribe him with McDonald’s or we have an exit plan and we sometimes take two vehicles to ensure we can bring Shane home if needed. You can’t plan for every environment to be ideal for an Autistic person, that’s not how it works. You can only do your thing and be ready to make changes as needed. This is the life for Shane and this is the life for Ryan and Delaney as well. It’s tough, it really is, but it’s what we do.
For the last year, before we took on a big move in early June, Ryan had been a host at a great restaurant in Minnetonka, MN called BLVD Kitchen and Bar. The place is amazing with great food and even better service. Now here’s what I mean when I talk about how we try to plan for our outings with Shane: We planned some happy hour time with some friends and neighbors at BLVD one evening. We don’t leave Shane alone with either Delaney or Ryan anymore (much more on that to come another time) so we were ALL going to BLVD with several others. This is at happy hour, on a Friday, mind you. Which was a great time to meet up and chat with people and relax. We arrived to a VERY busy restaurant but Ryan had reserved a big table in a back corner, probably the quietest place possible (for Shane) and more out of the way for the lucky server to work with us all. On the way we grabbed McDonald’s for Shane. After all, it was Friday and he ALWAYS gets McDonald’s on Friday and Saturday nights for dinner. So in we walk and Ryan gets us to our table and we set up Shane – really, our focus is on him and making sure that he’s happy and content if even for 10 minutes so we can chat with our friends. The place got louder and louder with more and more people coming in so we got the headphones out for Shane and hooked them up. He calmed a bit after getting agitated and asked for “home”. Our friends were there and everyone took the time to say hi to Shane, Delaney and Ryan and, like all families do – we all kept an eye on Shane to make sure he was “OK”. At one point about a 1/2 hour in Shane hopped off his chair and went to the corner and plopped on the floor – still connected to his iPad and with his headphones on. This was actually good because he was happy and he was making the environment his own for the moment. We hung out a bit more, had a bite to eat and we headed out. Delaney and Ryan took over checking on Shane for about the last 10-15 minutes just to keep him engaged and distracted as much as possible – it was really busy by then and really loud. This is what both girls do – they both look out for their brother… always. But this is our life, we usually put Shane first and we all follow suit. It’s not always fair for anyone and someday it could change. This night was fun and Shane ultimately had a good time and never really fussed – but we were prepared. It was the start of many, many more outings to BLVD Kitchen and Bar.
One thing that stands out to me when we do take Shane out anywhere is how we completely ignore people around us now that stare, gawk and whisper. This never really got to us. Brooke and I have always been ones to not let that distract us from caring for Shane. I don’t even know if people still do it. Well, actually I do because I have seen some people do it. I don’t know if it’s because, despite his Autistic actions, Shane is still quite happy (most of the time). He has an infectious laugh that gets everyone else laughing and he is very attached to his sisters. So in public it comes off as “cute” to see. Anyway, we still ignore the staring and gawking if it is visible. Because I can look at our life at any moment and say I am damn lucky.
I've Been Thinking 