There was a time in our journey with our youngest son when my husband and other family members were in denial that there was anything wrong with him. It felt as if I were on the journey to find answers and solutions by myself. The solitude of that journey made me question if I was the one who was wrong about our son, his development, and his learning. Time has proven me right. Throughout our journey with our son, I have striven to be honest with myself about who we are as individuals and as a family; how I feel about our son, myself, and our family; and the effort that I have put forth. Recent events have once again made me have to take a step back and have an honest conversation with myself about our son and our reality. This hasn't been an easy conversation for me to have with myself.
The past year has been extremely stressful for me. A job transfer, a lengthy daily commute, and multiple teacher/union strikes has increased the stress of an already stressful life. I've had to rely/depend on my oldest son and husband to take over many of the responsibilities that were previously mine. Transitioning our son through his final year of elementary through a teacher maternity leave and a teacher medical leave has added to that overall level of stress. I've tried very hard to keep life moving forward but my energy is waning and my stamina is dwindling. Recently, I've felt as if I'm treading water without the ability to reach the shore.
As I stated earlier, my husband used to be in denial that our son was different from his same age peers. He felt I just needed to give our son more time to grow up. He felt he was just developing more slowly than his friends. As a trained educator, I knew what I was seeing was not typical development. Recently, it's as if my husband and I have reversed roles. Today, he sees our son clearly for who he is and how he operates in this world. He takes great joy in watching him negotiate life on his terms. On the other hand, I seem to be stuck in who I want him to be, who I imagine he can be. Recent events have made me have to face this fact with honesty.
Monday evening, my husband, son, and I went to watch some of my preschoolers play in their first t-ball game. Our youngest son was so excited to meet my co-teacher and some of my students. Once we arrived, he launched into his typical manic whirlwind of movement and talking. He touched people; stood in front of them; invaded their personal space; and talked to them without knowing who they were. My husband took it all in stride. I found myself feeling very anxious. What were people thinking? Did they notice how age inappropriate his behavior was? Did people notice his stuttering and drooling? I was so afraid that people would see his large stature and poor social skills and say or do something to hurt him. We were outside our typical circle of people who know, love and accept him. I was nervous for him. For us.
Today, we attended our son's fourth grade play. He was so excited. It was all he talked about for days. He came bouncing into the cafeteria on his toes, in full George Jefferson strut, arms waving in excitement and victory like "Here we come people. Are you ready for us?". From the time he entered the cafeteria, I was on full alert and nervous. His face was covered in marker from the marker he had all over his hands. In his excitement and nervousness, he kept fidgeting with his face, nose, and mouth. The more he fidgeted, the more marker showed up on his face. He fussed with his mask he was supposed to wear. It was up. It was down. He took his glasses out of his pocket and put them on. He took them off. He put them on. They were on the end of his nose. They were falling off. At one point, as he danced and sang, he kicked a girl in front of him. Of course it was the mean girl from the bus who delights in making him cry. She turned around and yelled at him. (Yes, in the middle of the play.) That resulted in him crumpling into a crying jag. (Yes, in the middle of the play.) I wanted to console him and tell him it was okay. I wanted to tell her to stop being so darn nasty and evil to him all the time. Instead, I sat in the audience, helpless to help him work through this moment. Fortunately, the boy beside him and the girl directly in front of him consoled him and calmed him down. They gave the mean girl dirty looks whenever she looked back at my son and smiled. They were amazing. They did what I wanted to do. They help my son work through the bad, sad moment, and come back to his joyful self.
In recent weeks, I have had to have some honest conversations with myself. Why do these moments make me so nervous? Why do they have me on the edge of my seat so to speak? A large part of it is genuine love and concern for my son. I don't want his heart to feel the hurt of other's judgment and disdain. He genuinely LOVES life and LOVES people. If you had the opportunity to meet him, you would see his true affection for everyone he meets and the joy he brings to simple daily activities. The thought of other people's hatefulness stealing that love and joy from him hurts my heart.
I also have to admit that there is a large degree of fear. Is this as good as it's going to get? Is this our normal? Is this all I can expect? Will he always be the guy that stands out in the crowd because he can't blend in? He stands too close. He talks too loud. He touches without regard for boundaries. Is this what the future holds for him? For us? Will he have a "normal" job? Will he be able to live independently? Will he be able to find love and marriage? Will he be able to hold onto his joy?
In the past, my husband was in denial and I stood strong and fought for our son. Now, my husband is a pillar of strength and resiliency as I struggle to cope with our son's reality. He laughs when I want to cry. He shrugs and moves forward as I fuss and worry. I cling to my sense of humor and laugh at the insanity that is our life. It's the only tool I have at my disposal these days. My laughter is often tinged with a trace of lunacy but at least I can still laugh. Until I regain my strength and stamina to stand beside my husband as an equal partner in this journey, I will pass the torch to him and laugh in the shadows. Better days are coming. I truly believe that. I just need to have faith and hold on until we get there.
