The Lone Surviving Autism Mom

Sitting in my living room, I can hear Keegan screaming and crying downstairs. I can’t do anything about it because he is with his ABA therapist, and I know what they are doing. I know she is making him sit at a table for a certain period of time, when all he wants to do is stand up and stim, jump up and down, or dive into his swing. I know she is holding his little legs down in the chair so he can’t get up. I know they are not physically hurting him, but I still cry. I cry because of everything we put that poor child through on a daily basis to hopefully make him “better”. And he’s not getting better.

I think that the tears and the ‘woe is me’ attitude is in full effect today because of a dream I had last night. You know how sometimes a good or bad dream can influence your mood all day long. I dreamt, for a very short dream, that I woke up and everything around me was in shambles. Just like in the movies when everybody is dead and there are only torn down buildings and dirt, and the lone survivor is walking around wondering where everybody is, and why everyone is dead. I quickly woke up with my heart beating fast, wondering why the hell I was dreaming THAT, and why I was the one who had to be the lone survivor. Then, as I was getting Keegan’s breakfast ready, I realized maybe I had that dream because deep down that is exactly how I feel. Just like a lone survivor……….Alone. Sad. Frustrated. Confused. Chaotic. Beaten. Nobody there to talk to, or to understand me. Nobody who relates to me.

This is the life of autism.

After dropping Keegan off at school earlier this morning, and not getting a “good-bye, mommy” as usual, I decided to go to a nearby consignment sale for kids. As I was rummaging through clothes, I heard a familiar voice nearby. It was an old friend who I had lost touch with over the last 4 years. She had a son who was born the exact same week as Keegan, so we bonded during our pregnancies. We promised to keep in touch after the boys were born and after they moved, but you know how that goes. I was getting ready to walk over to her and say “hi”, and to rekindle the friendship, but I stopped. I decided not to say anything because I didn’t want to hear how great her son was doing, and how wonderful her life was. But more than that, I didn’t want her to feel sorry for me when I told her how poorly Keegan was doing and how much we struggle on a daily basis. I’m not one who can lie and say “I’m fine”, when everything is not fine.

As I am trying to avoid running into her, I start to wonder why this part is so hard. What would be so bad if we talked, and then hung out with the kids sometime? Well, simply because kids don’t want to hang out with Keegan, and I don’t blame them. And, most adults don’t want to hear me whining, and I don’t blame them either. It’s not that Keegan is annoying or mean, he just doesn’t like to play with anyone. He is literally in his own world all the time, and doesn’t allow anyone in most of the time. So, this is why I chose not to say hi.

I was recently at a play date (if that’s what you want to call it since Keegan doesn’t reciprocate the play), and I overheard the child tell their mom that they didn’t want Keegan to come over anymore. Thankfully he wouldn’t even understand if it was told to him, or if he heard, but it hurt.  Now, I don’t want that person to feel bad if they are reading this, because trust me when I tell you—I get it, more than you know. But even though I understand, it still hurts. It hurts that most people are not willing and/or able to see the purely sweet heart and soul that Keegan possesses. However, if I was a little kid, I wouldn’t want to hang out with Keegan either.

My husband has been battling with the ‘losing friends because of autism’ thing. He doesn’t understand why others do not reach out, especially ones who were close. I, on the other hand, understand why some friendships end after the autism diagnosis. I believe people struggle with what they are supposed to/not supposed to say and do. They have no idea what that family is going through, they can’t relate, and they don’t want to say the wrong thing (my opinion, anyway). And, I know we could do some of the reaching out, but it’s hard when everything in your life feels negative, and you don’t have anything to contribute to that relationship because all of your energy is given to this one little human being.

As I am feeling sorry for myself, listening to Keegan cry with his ABA therapist, I realized that maybe I had the crazy dream last night because of something I thought about before falling asleep last night. I was in bed thinking about the fact that I had not prayed in a very long time. I used to pray for others who were struggling, and rarely what I wanted or thought I needed.  I would always tell God (or whatever higher power is up there) thanks for everything he has given to me, and allowed to happen to me, to make me who I was. I felt very blessed, and tried so hard not to take things for granted. When Keegan’s struggle began, I think I prayed every night. I prayed he would sleep more than 6 hours, I prayed he would start talking, I prayed he would look at me when I called his name, and I prayed that I would be the best mom I could be while he struggled so much. The list of prayers went on and on.

When nothing was improving, and none of my prayers were answered, I stopped praying. I stopped relying on the higher power to help me through, and realized I was in this alone. However, on the flip side, I also feel that God has made me a person who can deal with this lonely and frustrating battle. I realize that maybe this is my “calling”, and my fate. Maybe I’m supposed to be that ‘lone survivor’ who somehow saves the day, even though she has to do it all by herself.  And as much as I struggle with it, I am OK with it, and I accept it. I have to. I just wish some days were easier and not quite as lonely and frustrating, for me AND Keegan.