My son asked me for a dream last night. This is his newest thing - he needs a dream from us at night so he can keep the nightmares at bay. Last night as I lay next to him during our nightly cuddle, I described a dream he could have; holding onto a huge bunch of balloons and flying over parks, houses, zoos, etc. Wouldn’t that be fun? And Monster answered, “But I’d have to be alone. I want to cuddle with you. I want it to be something where we’re together forever.” I almost started in about all being angels together, but then I decided I couldn’t tell him that story, because I don’t know if it’s true. Besides, no matter how cheerful a story I could concoct, it's still in the end a story about dying and not something I felt ready to bring up right then. So I gave him this lame response - “Well, we’ll always be together in this little house!” and since he was almost asleep he didn’t argue and accepted my lie and fell asleep.
This kid is so dependent upon me to keep him happy, safe, secure. And I don’t mind the job but I appear to be failing the poor guy lately. I am in a constant state of stress, low-grade depression, and tearful hopelessness. I had all of this fight in me, all this anger that helped me fight for my son, but it seems depleted and my attitude is now one of frustrated resignation. It’s odd, because I honestly thought that I might win these battles with the school, the daycare, and everyone else. But I am losing. I am failing my son and myself. Monster is kicked out of the after school program effective March 20th. We are getting together with the school next Friday morning to see if my son might do better in a special autism program, since no matter how hard the school tries, Monster is falling behind and he is sad and a misfit.
And so this sadness settles on me and I cannot shake it. And Monster senses it even though I try my hardest to hide it from him. And because Mom is sad and frightened, Monster becomes sad and frightened, and loses confidence in my ability to protect him from all of the sadness in the world.
Of course I can’t protect him. But I wanted him to believe it for a bit longer. He is six and still vulnerable. He has very little understanding of how the world works and this lack of understanding causes him anxiety. He looks to me to explain life as best I can, and to keep a smiling face and to reassure him again and again that everything is okay; everything will turn out fine.
I no longer know if this is the truth. I don’t know how everything is going to turn out. I have no fight left in me and I am at the mercy now of several places who don’t have Monster’s best interests at heart. I wait to see if the OCR will accept our case and request mediation with the after school program. I wait to see if a PCA shows up in response to my ads who seems like someone who will be patient and good with my child, and whom I can trust to be alone with him for several hours a day.
Everything I worked and fought for seems empty and useless. We’re right back at the beginning and nothing has changed except our choices have narrowed significantly and we can’t look back to what was lost or given up on. There’s nothing promising out there in the near future.
And so I muddle through. I was so cocky. I thought I was going to change the way schools and other programs saw children like mine. I thought I could help others by being tough and fighting for my son and maybe making it easier for those who follow to be understood and helped.
I am nothing. I am a mother to a disabled child who is beautiful and sweet and charming and smart and wonderful. And that should be enough. But it isn’t, because I am supposed to also advocate for my son and after fighting for almost two years I am tired and sad and defeated. And what was it all for? Nothing has changed. My son gets older and now the other children notice his differences more - he’s weird. He talks funny, He acts weird. He hits people for no good reason. He seems unable to learn. I hurt for him. I love him so much and I want to make the world a good place for him. I can’t. I want to protect him from all of the ugliness that is out there. I can’t. I can only love him, and offer him dreams to help keep the nightmares away. And hold him when he’s sad. I hold him a lot. I worry he’s sad too much. I worry about us both.
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1 comment:
Monster has the biggest heart. His love for you is so evident, and that's very meaningful coming from someone w/ Asperger's. I stand by my belief that he is not a severe case. He's just a child learning, like all 6 year olds do. Only instead of just learning the basic academic lessons like reading, writing, and math, he also has to learn HOW to socialize. Something that comes so natural to us, he actually has to work at. That doubles his work load, and I really do think he handles it well.
I know you feel like you're at square one, but you're not. Everything you've done has been a learning experience. I know I've said it before, but be patient. He will get these basics down and he will learn how to live with his disorder. Please don't give up because he really does need you. And even when it feels like everything is falling down around you, just remember that you've remained standing through all the other avalanches. You have a lot of fight left in you, and though it sucks, you're probably going to need it. Stay strong sister...
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