Thursday, November 5, 2015

I am sorry if this is repetitive or rambling. It has been a really long time since I wrote anything is this was emotional for me.   


I am writing this for therapeutic purposes I need to get it out I can't carry this anymore. I am an “autism mom” though I really don't like that term. I am a mom of a child with autism his diagnosis doesn't define him much less what kind of mom I am. There has always been this swarming thing around autism. The way people talk and argue about it. The way people and children with ASD are treated and expected to act. The way the media panics over the “cause” and any possible “cure”. Mostly for me it is all the unsaid words and emotions that have me scared silent most days. Today I am going to speak.

The day I got the call from the doctor's office to give me the results of all the months of repetitive testing we had waiting months to go through I sat quietly listening to her explain to me the diagnosis. She said he has autism and he would be considered “low to mid functioning”. I thanked her and hung up the phone. I crumpled to the floor in tears not really knowing what any of that meant. I just knew there was something wrong and it would be a long hard uphill battle to help him. In that moment I knew in my head that she was just confirming what I already knew but it felt like a loss. He was so little, only 3 years old. I just kept thinking of all the things he may never be able to do. I decided right then I wouldn't let this over take me I was done crying. I see now that was a bad idea.

Over the years Lex was put into many different therapies and went through many different therapists. He started in public school at 3 just a few months after the formal diagnosis. It was shortly after this I met my husband and soon after that I became pregnant with my third child. I was terrified throughout the pregnancy fearing this baby would also fall on the autism spectrum. When she was born everything was fine. Until she was about 18 months old we took her for her wellness checkup and some blood teats were done. One of them came back with some not so good news. She had a high level of lead in her system. Our house was over 100 years old and it was in our plumbing. We moved within a week. Once Lex and Violet were out of that environment things changed quickly for the two of them. Lex was settled into a new school that ended up being one of the best things for him, and once Violet was 2 all the evaluations and testing started for her. Long story short she isn't on the autism spectrum but she does have some developmental delays probably due to the lead she had been ingesting from birth. There is a level of guilt that comes along with knowing this that is sometimes over whelming. I will never know for sure the amount of damage the lead caused any of my children or who they may have been if their tiny brains where spared the toxic levels of lead.

Jump forward to today and what moved me to write this. I watched a PSA about the early warning signs of autism. I caught them all and all of kids have had everything I could give them to make sure their education is all it can be. However, I still harbor guilt, anger, and morn the loss of the unknown. I feel like a terrible person. Yes I love my son more than I can say, but I also desperately miss all the “normal” mother and son things that I will never have. I have lately let myself slip into the fear that my son doesn't love me. I know this isn't true and he shows me love in the ways he knows how and can. This is my own selfish desires that make me feel this way. Today the pain is deep. He doesn't speak to me, or anyone very much, I get no hugs or kisses when he gets off the bus. He is 8 years old and some times he feels like a stranger, one I want with all that I am to know. Most days I can ignore all of this and let the hope for the future get me by, but today is not one of those days. I try to think about all the good things. Like the fact that all of my kids are “well behaved”. People will literally approach us in public and tell us how good our kids are. The violent meltdowns had pretty much stopped. He is attending mainstream 2nd grade elective classes along with lunch and recess and is doing great. Things could be way worse. Still there are days when the self pity takes over. These vicious cycles of self pity and self loathing are compounded by my own anxiety and depression issues cause more than their fair share of trouble. I don't think I am ever really free of these things they just weigh on me in different strengths from day to day.


So, here is my ugly truth I morn the loss of a son I expected and didn't give birth to. I fear that he will be stuck at his current level of functionality and I will have to care for him for the rest of his life. It is deeply heart breaking to me when I think that he may never meet and fall in love with someone. I am always worried he will be bullied. I am terrified that he will be out in public one day and someone will misunderstand some of his actions and the police will kill. I fear the complacent words muttered over the bodies of other children with mental disorders, “we don't have time for this”. I will always wonder what I am missing or how different things could be and what that may feel like. Knowing these things about myself make me feel like a terrible person and an even worse mom. My selfishness is heavy and today I let it pull me down. Tomorrow is another day and I am hoping tomorrow I will be stronger and a balance can be maintained.  

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