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.

 

So Funny I Forgot To Laugh

“God sure does have a sense of humor!”                                                                                                    I have heard this phrase many times throughout my life, but only recently began to understand how funny he really can be.

Sometime in my early to mid 30’s, when I was contemplating if I ever wanted to have kids, I remember telling my mom something in a half true/half joking manner.  You know, when you are joking but deep down you are a little serious? I said to her “Hey, I have an idea–why don’t you take my firstborn for his/her first few years of life, then I’ll take it from there.” I realized at that moment that I was not ready for that newborn phase, when that little, precious gift was so dependent on you for everything.

I had personally struggled in my early years on finding my own independence, and I had finally achieved it and LOVED it. After a divorce, completing my masters degree, moving to a new city without family, finding a good job all on my own, and getting married to a man who allowed and encouraged me to be strong, my only option was to be happy AND independent. However, I was also a little selfish.  Thinking about that possible little ‘bundle of joy’, I couldn’t imagine not being able to sleep in on the weekends, to not be able to watch TV when I wanted, or to go on last minute romantic trips with my hubby. Basically just not being able to do whatever I wanted whenever I wanted. It was not only my selfishness that was pushing me away from having a child, but also the shear dread that this person was going to be dependent on me for EVERYTHING.

I had always viewed dependence in others, especially women, as weakness. This was why it was so important for me to rid myself of my own dependence. I know a child doesn’t have any other option but to be dependent, but this fact was not appealing to me. I remember throughout my life I would cringe when I heard a mom whine about how sad she was that her children were growing up, or how depressed she was going to be when her children moved out of the house and away to college. I would always want to say , “Are you kidding me? I will dance the happy dance when my child moves out of the house.” Then, of course, their response would be, “Oh, you will change your mind when you have kids. You will want them to stay little forever.”

Fast forward to having my one and only child. I was excited to be a mom, but more excited to get past the newborn phase. I would cry almost daily, wondering ‘why is he crying? Is he hungry? Is he tired? Is he in pain? When will he sleep through the night?’ I hated the guessing game. When I complained to my friends and family about this part of raising a child, they would say, “Don’t worry, soon enough he will be able to talk and tell you what is wrong, and next thing you know, he will be getting himself out of bed and making his own breakfast so you can sleep in.”

My son is almost 4 and I’m still waiting.  I’m still waiting for him to tell me what is wrong, or what he wants to eat, or if he’s tired. I’m still waiting for him to let me sleep in. I’m even waiting for him to sleep through the night.  And I hate it—just like I knew I would. I not only hate it for me, since I am still that selfish, independent woman, but I hate it more for him. I hate that he gets so upset when I don’t understand what he is trying to tell me. I hate that he cries for long periods of time and I have no idea how to help him. I hate that he may never be able to make his own breakfast, let alone not need any assistance to eat his breakfast.

Most days I hate his autism, but I never hate him. He is the only reason I am able to live with my biggest fear being my reality. He makes me see that anything is possible. I do, however, still wonder why those women who never want their children to grow up don’t end up with the children who may never get the chance to. And, the one woman who wanted their baby to leave for college yesterday may never see that day. Even though I am not laughing now,  maybe it is just God’s sense of humor.  Maybe it’s his way of strengthening those weaknesses within us. I may never get to dance that college happy dance, and I may never get to feel that independence again. But, maybe just maybe, I will get something even better in the end.