A Day of Peace with Autism

Yesterday was a day of peace. What happened to make our day so peaceful? Absolutely nothing. You see, usually a day with our son, who has autism and ADHD, is like living with two different people at once. There is our sweet, loving son, Jason, who truly is our most thoughtful, affectionate child…when he’s Jason. He’s the one to remember to make your birthday special, or want to take care of you when you are sick. He is very outgoing with people he meets. Very polite, and inquisitive. My feeling is that people just meeting him find him quirky but charming in a genuine way. 

So, when things go south, I just have to remember who Jason really is. This loving little guy that I adore is not the same boy that makes me question myself as a parent daily. Who yells and rages at me in ways that just defeat me. And things can go bad in a split second, leaving me walking on eggshells for most of the day. Over the years we have read the books, tried the diets, and after years of refusal, tried the medication. We try to make sure that he stays fed, hydrated, and have completely removed the iPad, and other electronics. Supplements? Check. Once in a while we will think we are onto something, but no, there he goes into a complete meltdown, hitting the walls, hitting himself, irrational, inconsolable, yelling words our older children would never have dared to utter to us back when they were little and we had this parenting thing down. And it makes me so sad for him. The tears are real, his misery is real. In these moments it doesn’t matter that we’ve told him fifty times that day that we love him and always will. His insecurities come out from deep within, and sometimes there is nothing that can be done except to ride it out. 

When Jason came to us at 22 months, he had been living with a foster family since about the time he turned one. Before that he was with his birthmother and grandfather at home. So, by the time we were matched with him at 14 months, his birth family had disappeared, and then after staying several months with a family of strangers, we brought him to a foreign country, and another group of strangers that spoke an entirely different language. (In fact it would be a few years before Jason started to acquire language skills. We would later discover that this was a part of his autism diagnosis.) When he first came home his days were joy filled. He bonded with us as his parents, and with his siblings immediately, lavishing us with hugs and kisses. But at night his demons came out, and he would wake up in terror night after night for months. For the first week he would only sleep with me holding him on top of my chest. If he woke and I had layed him to my side, he would scream in terror. Eventually he felt comfortable sleeping next to me, and then on a cot next to my bed. After weeks I moved to his room with him sleeping on the floor next to his bed, and then finally after months of being home, he slept on his own in his room. Still, for years he would often wake up in the middle of the night barging into our room screaming in terror. 

We enrolled Jason in the public school system’s special preschool program at four, thinking that maybe his lack of language acquisition was due to not enough socialization with peers his age. At the end of the semester when we met with his teacher, she explained some of his issues in the class, such as his inability to stay focused on a task, and lack of interaction with other children. I asked her then if she thought he might have ADHD, and she said, “Yes, and I think he might also have autism.” That was a lightbulb for us. It just made sense. It was like a terrible sentence, and a relief at the same time. Over the next month we would have him tested, and the experts would confirm this diagnosis. We began therapies, and slowly he started to build his language skills, and make better eye contact. We got an IEP set up for school so that we could adjust his services as needed every year. In fact, at school Jason did (and always has done) fairly well at school behaviorally. He is well loved by teachers, and liked by most of the students. 

At home, though, perhaps because of the lack of structure, or because he feels he can let his hair down, things are not the same. At home he is two boys again. And after he has raged, and beat the walls, or torn up his books, and he goes back to being Jason, I have to just love him and enjoy him, and soak up his love for me as he wraps his arms and legs around me for a super Jason sized hug. And I have to not hold it against him that moments before he was making life somewhat miserable. I am glad that at least there is this good, loving side, and that it isn’t always just darkness. Adding younger siblings both rocked Jason’s world and made it better. His dark side comes out even more often with these walking triggers, but he has also learned to be more patient, to share more, and to be nurturing to them. And his newest little sisters with Down-syndrome can do no wrong in his eyes. Only to his 3 year old sister will he yield his beloved living room chair, or back off in a disagreement. 

Yesterday Jason was sick. He was at the end of a cold from last week, and had been complaining of a stomach ache for a couple of days. As we have had both of these illnesses floating around all of the members of our family for the last several days, this was not unusual. But the real surprise was that Jason was just Jason. Really starting from the previous day he was somewhat lethargic, but still his sweet happy self, and the dark side never came out. Not once. Jason is now ten and has been with us for over eight years. So, for me to say that this was unique tells you something. It’s not that every day is a bad day with him by any means. To have this day, though, where nothing triggered an outburst of emotion, where we only saw the loving, happy side of Jason was such a blessing. I found myself thinking over and over, “This is how it would be if he were normal.” That sounds terrible to say, but it was such a revelation to me. Who knows how much of the other side of Jason comes from his Autism/ADHD diagnosis, or from the huge trauma of leaving his birth family as a toddler. Somehow, though, the wiring in his brain has changed, and somehow having his immune system down just this one time, did what medication, diets, and therapies couldn’t do, and kept those demons away, allowing him and us to have a peaceful, joyful day together. Oh, to be able to bottle that up and pass it around as a cure! But for now, I will have to be grateful for just this one day.