I told myself that this year was going to be my year to find the peace on this journey with autism. Part of that journey is learning to celebrate the hurdles we jump together while I place less emphasis on the deficits that follow us. And just seventeen days in I have so much to tell you.
Tonight, as I sit at my dining room table with the lights off expept for a dim light and my computer screen and i cant help but realize that in the tough parts of the autism is when my heart smiles most. It is all about perspective I suppose. Let me tell you what i mean.
Like tonight, as we sat at the table he said “ight oooofff” I immediately jumped up and turned on the dim light and turned off the big light in the dining room remembering that he hates that light. His eyes have always been sensitive to light which is why he wont often go outside unless its to jump on our trampoline with his eyes closed. And as I sit here now I can feel my heart swell. And tonight as I ushered him to his bed i softly tried to guide him with my hand softly pressing on the small of his back to guide him. In hesitancy he leaned back in the most awkward of ways and i couldnt help but laugh as i watched him walking with his back arched and head looking at me sideways. I laughed and began tickling him as he began to run laughing straight up the stairs to his room as we laughed and played.
As I stood there today looking at our dry erase calendar that hangs in our dining room at first all I could feel was overwhelmed as I looked at the squares filled with small print but then I couldn’t help but smile as I realized that Aiden hadn’t erased the things he does not want to do. For in the past, he had a tendency to look at the calendar just after I would sit and fill it out for the family questioningly and would proceed to erase everything that was undesirable to him. So after three re-writes of our families schedule I gave up and the calendar remained empty.
Tonight as I opened the refrigerator I looked at the lock on the side that remained open his need for denied access has waned and I remembered back when he was just a small toddler and the fear of his PICA left us fearful that he may ingest raw meat.
And probably the best thing to come through this week was a random note from his teacher that blew me away more than anything thus far. Before I divulge into this I feel a bit of a back story is in order. Aiden is severe. Aiden does not care to be friends with anyone. He does not even like parallel play much. When i brought his siblings home from the hospital he didn’t pay them any attention. He is the type of kid that just kind of exists in the same place as others. If you say hello to Aiden he will not acknowledge you. If you throw a ball at aiden he will just let it hit him and continue on his way. He Attended a school for the most severe students up until about a year ago when i moved him to an autism program in a local public school system and just about a month ago we moved him into a higher functioning class on the suggestion of his teacher I was apprehensive to say the least but I figured nothing is ever set in stone. so moved he was.
I was not able to visit the classroom until three weeks after the move and when i entered the room a boy immediately came to me and said “hi aidens mom!” Shocked at this as I was used to kids in diapers, nonverbal andwho harbored no interest in social interaction I said “hello, merry christmas” as I peered out of the corner of my eye at Aiden as he climbed over the barrier built to keep him away from the teachers computer and immediately questioned the move. “How could he ever survive in this class?” I thought. Last week I was told that another child had gotten upset over Aiden’s yelling in class (he does this when he is happy its more of a stim) and told Aiden that “your yelling is upsetting me and if you are here tomorrow I’m not coming”. And for the first time I could tell that evening that something was up because he was markedly anxious and repeating “no school tomorrow”. When the teacher told me of what had happened i was immediately heartbroken but after the initial heartbreak set in i began to celebrate. MY KID GOT IT! MY KID UNDERSTOOD! YES!!! MY KIDS FEELINGS WERE HURT! (ok I know that sounds weird but when your kid has never shown any social emotional reaction to anything this is a huge milestone) We got through that little hiccup and then yesterday this is what came through my texting on my first day of work in the center that used to service him as i listened to the familiar autism moans on the other side of the barrier wall
I sat there trying to hold in all the excitement. I stared at the phone in complete disbelief. Was my boy making it? Is this all he needed? As the instructor came in she was none the wiser to what was going on in that iphone and in my life. I listened to the children and therapists around me and closed my eyes thanking God for the moment he was giving me. It could not have been any more perfect.
Autism has taught me a level of appreciation that I had never had before. Autism has taught me about beauty amidst chaos. Though times get tough I have learned to just hold on and look for the good things. We are so lucky. Despite the recent return to pull ups and wetting accidents what we are getting is so much better as he progresses socially. I have never seen so much behind those eyes. He WANTS to interact. Hes getting it. He is understanding empathy and that cannot be taught. His eyes are meeting mine for the first time and for the first time as I search I am finding him and he is finding me. What an amazing road this is. We are so Lucky. and I am so thankful for the hard times because they have made the good times that much sweeter.
And last but not least the lesson I am learning from all of this is that sometimes you need to let go of trying to “fix” one thing and focus instead on celebrating the forward momentum. Remaining focused on the deficits only denies the joy that is found in the growth. So laugh, enjoy every moment knowing that you are blessed even when its hard. Because hard moments are just that… hard moments.. they will pass… and what is on the other end is so worth it.