For years people have been telling me I should write a book about Kevin and what it's like to be his mother, and for years I've been thinking, "There's no way I could ever write a book but I guess I could do a blog." A friend of mine has a son with autism and she has a blog. It is refreshing and honest and always full of hope and gratitude. If that's what your looking for in a good read I strongly suggest you stop reading right now and check out "Robbie's Journey" by my buddy Simone. I'm not sure yet what I'm going to write but I am positive it will all be vulgar, inappropriate and offensive. I have put off writing this blog for years because I didn't know where to begin. Do I begin with the day he was born, the day I realized something was wrong with him, the afternoon he pulled down his pants in Shoprite and pissed on all the cereal?
My son is disabled. That is an unpopular term. I'm supposed to say my son has special needs or that he's developmentally delayed. Whenever someone brings this to my attention I always tell them, "Your child might have special needs but my son is 8 years old, drools like a sheepdog, beats the shit out of me on occasion and (how could you forget) pulls down his pants in Shoprite and pisses on cereal. As far as I'm concerned, he's disabled. I don't mind the term special needs but I HATE the term developmentally delayed. It took me 3 years of relentless searching to finally get a diagnosis and when I did, that's what I was told: My son was developmentally delayed. Do you know what you think as a mother when you hear that?? "He's gonna catch up!!!! Oh thank God, thank God he's not disabled he's just delayed! I can fix this! Everything that's delayed eventually gets where it needs to be. Trains, buses, planes, you name it, YEAHHH!!!!!!!!!!!!!!" And it's a lie. What you're thinking in your head is a lie. The term developmentally delayed is a lie.
Once upon a time, in a far away land, Someone decided that "disabled" was too harsh a term for us young mothers to endure. "We'll make a new term," Someone said. "Something that gives the mothers hope and is a little more politically correct. That way moms don't leave our office devastated and we don't have to have these uncomfortable conversations anymore. "It's a win win for all of us," said Someone. And guess what? Someone was right. It worked. It worked on me. I ate it up like honey on a spoon and lived on a steady diet of false hope for years. You see Someone knew that eventually us members of the, Nobody Wants to be a Member of This Club Including us Club, would eventually figure out for ourselves that our children were never going to catch up. We'd find our way out of a blissful, intoxicating land called Denial (which I'll blog about another day) and arrive in an initially devastating place called...................Resignation. We would resign ourselves to the notion that our children would never get better, only instead of blaming Someone for this, we would blame ourselves. "After all," we'd think, "He's only delayed, Someone told me so. If only I'd found the right doctor, if only I had spent more money on private therapy, if only I hadn't put him that self contained classroom, if only, if only, if only." Someone was a genius. The plan worked perfectly, until today. Today, I declare war against Someone and I'll be fighting with the only weapon I have, the truth. I'm going to tell the truth about what it's like to be Kevin's mother, and buckle your seat belts ladies because it's gonna get bumpy. I'm going to be honest about every lie I've told myself and the lies that people have told me. I'm going to curse,offend and insult. Here I'll start now: Whoever you are, you're child is disabled. They're not delayed they're disabled. They're never going to "catch up" no matter how hard you try or how much money you spend, not EVER. And here's the kicker, one day you're going to get to a new place, a place that's even sweeter than Denial because it's real. It's called Acceptance. That's where I live. It took me awhile to get here, there were a lot of roadblocks and bumps in the road, but it was worth the journey. In the land of Acceptance you don't care that your son is never going to catch up and you call him disabled because he is. If you're reading this I'd like you to join me here. Come along, I'll show you the way.
My son is disabled. That is an unpopular term. I'm supposed to say my son has special needs or that he's developmentally delayed. Whenever someone brings this to my attention I always tell them, "Your child might have special needs but my son is 8 years old, drools like a sheepdog, beats the shit out of me on occasion and (how could you forget) pulls down his pants in Shoprite and pisses on cereal. As far as I'm concerned, he's disabled. I don't mind the term special needs but I HATE the term developmentally delayed. It took me 3 years of relentless searching to finally get a diagnosis and when I did, that's what I was told: My son was developmentally delayed. Do you know what you think as a mother when you hear that?? "He's gonna catch up!!!! Oh thank God, thank God he's not disabled he's just delayed! I can fix this! Everything that's delayed eventually gets where it needs to be. Trains, buses, planes, you name it, YEAHHH!!!!!!!!!!!!!!" And it's a lie. What you're thinking in your head is a lie. The term developmentally delayed is a lie.
Once upon a time, in a far away land, Someone decided that "disabled" was too harsh a term for us young mothers to endure. "We'll make a new term," Someone said. "Something that gives the mothers hope and is a little more politically correct. That way moms don't leave our office devastated and we don't have to have these uncomfortable conversations anymore. "It's a win win for all of us," said Someone. And guess what? Someone was right. It worked. It worked on me. I ate it up like honey on a spoon and lived on a steady diet of false hope for years. You see Someone knew that eventually us members of the, Nobody Wants to be a Member of This Club Including us Club, would eventually figure out for ourselves that our children were never going to catch up. We'd find our way out of a blissful, intoxicating land called Denial (which I'll blog about another day) and arrive in an initially devastating place called...................Resignation. We would resign ourselves to the notion that our children would never get better, only instead of blaming Someone for this, we would blame ourselves. "After all," we'd think, "He's only delayed, Someone told me so. If only I'd found the right doctor, if only I had spent more money on private therapy, if only I hadn't put him that self contained classroom, if only, if only, if only." Someone was a genius. The plan worked perfectly, until today. Today, I declare war against Someone and I'll be fighting with the only weapon I have, the truth. I'm going to tell the truth about what it's like to be Kevin's mother, and buckle your seat belts ladies because it's gonna get bumpy. I'm going to be honest about every lie I've told myself and the lies that people have told me. I'm going to curse,offend and insult. Here I'll start now: Whoever you are, you're child is disabled. They're not delayed they're disabled. They're never going to "catch up" no matter how hard you try or how much money you spend, not EVER. And here's the kicker, one day you're going to get to a new place, a place that's even sweeter than Denial because it's real. It's called Acceptance. That's where I live. It took me awhile to get here, there were a lot of roadblocks and bumps in the road, but it was worth the journey. In the land of Acceptance you don't care that your son is never going to catch up and you call him disabled because he is. If you're reading this I'd like you to join me here. Come along, I'll show you the way.
As a side note I promised to be honest in this blog so here goes: Even in the land of Acceptance it will really piss you off when your son pulls down his pants in Shoprite and pees on the cereal. It will also piss off the people who work in Shoprite. I'm fairly convinced Shoprite invented Shoprite From Home to keep Kevin out of the cereal aisle.
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