Stuck

So it's Christmas break and I have been catching up on my social media, reading other people's blogs and I came across one that struck a nerve, a raw nerve, one that I thought had healed. It was written by another mom who has a son with severe autism speaking her fears for her son out loud. Fears of regression, progress and most importantly the future. You see she knows that her son will always live with her. He is 8 and doesn't speak. He isn't potty trained and has severe anxiety which limits not only his own life but the lives of his family members. I love this blog and I am in awe of this mom's ability to be so transparent with her life.
I am also a little jealous. I know this might not make any sense but she knows. Even though it hurts and I can feel her pain coming through the keyboard as she types. I wish I knew-there is comfort in the known. The unknown breeds fear and uncertainty. I have 2 boys on the autism spectrum. Their diagnosis is much less severe than her sweet boy's. They can speak and function in the neurotypical world. But it hasn't always been that way. I still remember when my youngest was little. His meltdowns were so severe that I was traumatized (I imagine he was too). I planned all my outings around his father's work schedule so I could do them alone. His behaviors were so easy to misunderstand. I remember correcting an older lady who I am sure thought she was helping. "He isn't being disobedient. He has autism and he is feeling very anxious".She looked at me like I had grown a second head.This had become my life. Translating my children's behavior so others could see what I could. They were and still are good boys.They have trouble understanding others feelings but when they do they feel them so deeply.
I remember reading all the statistics and trying so hard to accept that my beautiful little boy who truly was a miracle might never speak. That I might never hear him say "Mamma" or "I love you".I remember when speech finally came.It was so echolaic. Just words repeated from movies, commercials. Beautiful to a mamma's ears but still no connection to me. I remember the first time he looked in my direction and said my name-Mamma. He was 3. I remember going to school functions. Watching all the other children playing and he is in his own little world, just stimming because it's all he knows. I remember the IEP meetings-all the services he needed at first. I remember the one in second grade-He is being moved to indirect services. Just speech and OT. Look at how far he has come. In that moment I saw a light, hope. It has been a roller-coaster ride and I still don't know where we are headed, He has come so far. His older brother is living alone, independent and has a girlfriend. Something I had all but given up on. Most days I can almost forget he is different. Then I get a glimpse of what typical is and the hurt returns. Things he may never understand. The worst is when he understands just enough to know he doesn't. He wants friends but doesn't understand how to do it. He wants to be around others but doesn't know what to do when he is. He knows when what he is doing is completely inappropriate but he doesn't always know what to do instead. He knows when he is being talked down to by his peers. He knows when they are pitying him or as he would say treating him like he is "retarded". He hates it and wants no part of it. He knows he is smart but he is painfully aware of his limitations.
As his mother I feel so helpless. How do kids today relate to each other? I wish he had one friend-just someone who could bridge the gap that I can't. Most mothers have hopes and dreams for their children's future. I wish I knew what mine held. I am so afraid that when I am gone he will have no one. No one to tell him it will be OK. To talk him down when he is scared. To love him the way I do. To see him for the beautiful soul he is and not the selfish brat he sometimes acts like. He doesn't mean to be so self absorbed. He really isn't but it is so hard to see sometimes past the autism. To see that it is a defense mechanism-a survival technique. He wants to love, to be loved but like anyone else he feels the sting of rejection. It is becoming easier to just be alone. It's less confusing and less risky. Change has always been scary and it can and will become paralyzing if you don't push him. How does one even begin to prepare for what is unknown? Will he go to college-does he want to? Will he be able to hold down a job-live independently? Will he find that special someone-have kids? I just don't know. And that scares me. Sometimes it even paralyzes me. Sometimes I just chose to live in denial. Then reality smacks me in the face.
I do believe in Jesus. I know without a doubt that God will always watch out for and love him in ways that I can't even imagine. I am grateful that he knows that too, But some days I just wish I could get just a small glimpse into what the future held. I just wish I knew.