Thursday, February 6, 2014

You Are Not Enough

Yes, I said it. But before you jump down my throat for saying it, let me explain.

When I started this Autism journey 7.5 years ago, I had this belief. I could "fix" my child. If I was the perfect parent, the perfect advocate, the perfect teacher, I could change his circumstances and make his life the best it could be. All on my own.

I was wrong.

This belief I had took me down roads that I wish it never would have. The guilt. The control issues. The unrealistic expectations of myself. All culminating in an out of control addiction to alcohol to deal with me being a failure. All because I thought I could do it all on my own.

You cant! You are not enough.

This is true of any parent. Not just parents of special needs children. I used to think that the saying "It takes a village..." was just a sentiment at best. But it is true. You are not a super hero. No one is. I had people telling me that I was super mom, and I believed it. So when it all crumbled around me I felt like I let everyone including my child down.

The truth of the matter is this. Our job as parents is to help our child navigate through the world. And this happens by putting people in their path to help them succeed. And we need to have faith in those people we put in their path. Not blind faith of course, but we must allow them to share in the responsibility of helping meet our child's needs.

This is not just teachers, therapists and doctors, but also partners. I had the hardest time giving my husband some of the control and care giving of Andrew when he was young. I was gonna do everything because I was the only one who knew how to do it right. You know where that got me? Therapy. I needed to believe that my husband could meet Andrew's needs. My husband needed me to believe in him. Because I didn't, he didn't believe in himself. And that is a tragedy. It actually caused Andrew to only want me and push his daddy away. I was in the way of their relationship because I had to have control. 

I am not proud of those years. They wrecked havoc on my marriage and myself. I am still learning to ask for help, as well as let others carry some of the weight of this journey for me. It is not easy for me. It is like a constant battle in my head. One part of me knows that I need to hand over some responsibility, and the other part of me tells me that I am being weak and sub par because I can't do it all.

Give yourself a break. You are not a super parent. You are just a human being and you have your limits. Delegating does not make you weak. Accepting help does not make you incapable. It makes you wise. Wise enough to know that there are other people out there that can contribute a lot to the raising of your child. People who have expertise that you don't.  People who want to touch your child's life and help you support them the best way possible.

You just need to let them.

You are not enough.

Sunday, February 2, 2014

Just For A Day



A couple years ago, Andrew bit into a very hot jalapeno pepper. I didn't know it at first.....but after watching him in the bathroom trying to rub something off his tongue with a towel and asking him frantically what was wrong, he finally in desperation said one word. Pepper. I then went through the house looking and found the tiniest bite out of a small red jalapeno pepper on the floor. He had curiously removed it from our CSA box and taken a little nibble. 

I was thrilled that he had used his words to communicate. It was the first, and one of the only times he has answered a question verbally. But I wanted to know how he felt. If he was in pain. How hot the pepper was. He couldn't communicate that. So I did the only thing I could do. I took a bite of the pepper. I immediately regretted it, but at least I knew how Andrew felt. I knew how long it would take for the pain to go away. It was the best I could do to to understand him. To be in his shoes for a brief couple moments.

I would give anything to be able to see the world how he sees it. With his unique vision and the way he processes everything around him. I wish I could see what he sees when he stares at the aquarium so intently....unable to break his gaze when I am trying to get his attention. I wish I could see the ocean through his unique perspective. Feel what he feels as he gazes at the waves and watches that piece of seaweed float by. I want to know why that one mailbox catches his eye each time we walk by it. Just for a day.

I would give anything to have his ears. To understand why certain sounds hurt him so much and how he feels inside when he looks like he is crawling out of his skin. I wish I could hear words the way he hears them. So that I could understand how he feels when he is unable to decipher the words he hears. I want to experience the anxiety and overwhelming feeling he feels when the words are coming at him so fast that he can't process it and screams and hits his head as hard as he can. Just for a day.

I wish I could hear music the way he hears it. It is the only time when he seems truly happy and comfortable in his skin. I want to feel as serene as he looks as he blocks the world away when his music is playing. I want to know if the notes are sharper, or if he sees the music with his eyes as well as hears it with his ears. Just for a day.

I would give anything to be in his body. To be able to experience what he does when he lays in the sand for hours at the beach....watching the sand fall through his fingers over and over again. To feel the comfort he receives from the deep pressure he seeks constantly throughout each day. I want to feel how uncomfortable he is when he cannot tell where his body is in regard to his environment. What goes through his head when he runs into someone hard just to get that input and the relief it must give him. Just for a day.

I want to know how what it's like not being able to sleep for hours on end during the night. I want to hear his thoughts that seem to jolt him up and won't let his body rest. I want to experience why he is happy one moment and crying the saddest elephant tears the next. Is it a painful memory, anxiety, fear, or is his body causing him discomfort? I wish I could take his place. Just for a day.

I wish I knew what he wants to tell me every time his eyes meet mine and he can't find the words he wants to say. He looks so sad sometimes. So defeated. I want to understand what it is like to be misunderstood by the people who are supposed to know him the most. Just for a day.

Because if I could be him for just one day, I could support him the way he deserves to be supported. I could understand his needs that much clearer. He would know that I get it, and he wouldn't have to try so hard to make me see. I wouldn't have to see that look in his eyes that tells me he has run out of ways to get me to understand his needs. I would see him fully. I would give anything for that opportunity.

Just for a day.