Outside The Box...

My brain is in a constant state of thinking outside the box. All day every day, definitely not in the box. In our house we don't have a box to fit into. This weekend was no different and if anything it was the epitome of thinking outside the box to make what we had to do with Alan, a success.

This weekend we decided we were going to tackle some of the lab work Alan needed to get done for the bio-medical doctor appointment we had recently. The list of a urine analysis, a stool analysis and actual blood work seemed daunting and scary. Alley has not had blood work done since he was about two years old and that was a quick little prick for a gastrointestinal doctor down at the University of Chicago. To say that appointment scarred me for life with Alan, is an understatement. I distinctly remember as we were wrapping up with the actual doctor she said, "Oh and I am going to send you for blood work right now. Just go around the desk where you came in and there will be a little room for Alan to get his blood drawn." Like it was any other patient. Okay, great! Let me just stroll casually over with my son who cannot speak, make him sit down while he has no idea what is going on so you can stab him with a needle, this should run smoothly (insert eye roll and horrible sarcasm here). So, being the newer parents to the Autism journey at the time, we listened to the doctor and pretended that it would be quick and fine. We went into the tiny room with one staff member working. At that point we tried explaining that Alan has Autism and he is nonverbal. He is probably going to fight this whole process, it might be better to have another staff member help, but what do we know. She kind of rolled her eyes, and basically made us feel stupid for being so nervous about the blood draw. I will never ever forget the fight that this little mighty two year old had in him. My husband had a full body hold on him, and she still couldn't get the needle in. The volume of screams that he let out in that hospital, were something I will never not hear. They were blood curdling. Needless to say after that day, I think Alley left his mark on University of Chicago hospital staff. My husband and I also promised him and each other that we will never be unprepared for an appointment again. From that appointment on we always know ahead of time what tests could be done at upcoming appointments, what the doctor will check on Alan physically, so this way we are able to prepare him the best we can.

Fast forward five years later to this last appointment. When the doctor told us he was ordering blood work, my heart sank so low I think it didn't beat for a good minute. A million thoughts ran through my head.... He is now seven years old, much bigger and heavier then when he was two. He is going to physically hurt someone when they try and get his blood. Alan will be fighting so hard that they will not be able to find the vein, which will end up in more poking in his skin. How is this going to even be physically possible?.... Well this weekend we decided was THE weekend. The sooner we get these lab tests done and back to the doctor the sooner we can hop on a course of treatment for Alley. The goal is to supplement where he is lacking on the inside and look at his brain chemistry in particular. We spoke with the doctor about using his Valium that is prescribed to us for situations like blood draws, airplane rides, dentist appointments, basically high anxiety situations for Alan. We have only used it once before and that was for a doctor appointment when his head was bleeding non stop. This was the perfect time to use it, even though he takes such a minute dose that I really don't feel it has hardly any effect on him, but we were going to try it again.

Another tool we have in our toolbox with Alan are social stories. We use these a lot for parties, day trips, family pictures, vacations, a sports event, really anything that is going to be out of the norm in our routine. Or a place he has never been to that might be a little stressful, loud or chaotic for him. I usually am the creator of the social story. I use pictures of Alan, I get images from Google to wherever we are going and things he might be doing. I add images from PECS which is a picture program he uses at school to show his daily schedule, so it looks familiar to him. I always add at least two pages in there of what our expectations of Alan are for that particular event, especially behavior wise. Alley is a very very visual learner. We can take him to a place one time and he memorizes the route to get there. The next time we go he will start getting excited way before we are even at our destination, so these work for him. We threw together one by using pen and paper (usually they are typed on a word document) to explain what was going to happen at the blood draw that morning. Again we had to pivot and think outside the box. We knew that he needed something in writing, for him to read and us to read it to him so he can process what is going to happen. It takes away some of the unknown for Alan, so it eases a little bit of the anxiety he feels.

So there we were, Saturday morning. I was getting Vinny and Joey ready to go to Vinny's football game, while my stomach was doing actual flips knowing that my husband and Alley were at the lab. I began loading the van with the other two boys and all the things we would need for the game. Alan's appointment was at 8:00am, and as I was pulling out of my garage at 8:23am my phone was ringing and it was my husband. My immediate thought was, Oh no... Alan was too hard for them to handle and they didn't get the blood the needed. My heart sank thinking we would have to try this another time, I was bracing for the hard. When I picked up the call and heard my husbands voice sounding so jovial and proud, I took a breath for the first time that whole morning it felt like. He told me it went so good, better then he expected. of course Alan did NOT like getting stuck with the needle and hated the sight of his blood being drawn, but he continued to watch it anyway. My husband said that the staff at this lab was amazing, they listened to him when he explained that extra hands would be beneficial for everyone involved and it went very smoothly.

I'm not sure if it was the little bit of Valium, his social story or his two guardian angels that watch over him very closely, who I begged to be with him that morning. Maybe it was a combination of all of the above. I'm not sure. But what I do know is I have never been more proud of our guy. He handled it like such a stud and carried on with his day at the football game. I am very excited to get these results and see what path it leads us down. I know we will all have scary, and life altering experiences on our Autism journeys, that is a given. However I have also learned that those experiences are always there to teach us, as care takers, how to embrace the next scary situation a little bit outside of the box.

With grace-

This Autism Mama