You probably read that title and had to look twice. "Autistics vs parents of kids with autism" what the heck?!?!?! Aren't we all on the same team here?
Well, yes, technically we are. But sometimes it doesn't feel like it.
I've read on some autistic friend's pages that the parents don't understand the kids. True, maybe I don't, but because you're autistic, you understand my kid whom I've known all their life and you've never met, better than me? No, you don't.
I've read that you are not a real ally of autistics if you support Autism Speaks. And okay, this one I kind of get, because Autism Speaks is NOT one of my favorite organizations. But on paper, Autism Speaks is a charitable organization that is aiding in autism research. Parents are trying to help, supporting this cause is what these parents think is the right thing. (Sidebar: Look into ASAN if you want to support autism, a much better organization.)
And let's touch base on the ever popular "person-first" argument. Have you ever noticed that most autistic people refer to themselves as autistics and not people with autism. I'm going to clear this one up right now. It's not that anyone is trying to take the person out of autism, it's about grammar. Yes, "autistic" is grammatically correct where "person with autism" is not. Look up the rule about passive voice. That's all that one is.
Oh and there's my favorite one "Do this or be that!" Sounds a lot like Jenny McCarthy's "Be a Warrior Mom, or be an attention seeking victim" doesn't it? (In advance, apologies for comparing ANYONE to Ms. Playmate.) I hear "Let us be ourselves, or you're oppressing us!"
Now, I'm coming down pretty hard on autistic adults. Some of you may agree with what I'm saying, and some of you may not. Some of you may have seen the same things I have and it rubbed you the wrong way, some of you may have not. I'm not trying to be mean to autistic adults. My point here is, this issue isn't just black and white.
We all want the same thing in the end, we want success for our kids, acceptance and fair treatment for everyone, and a chance at a sliver of normalcy. Normal being a very subjective term.
Autistic adults make it clear that they want the freedom to be themselves. Don't we want that for our kids to, but we want the to be the best them that they can be. So where is the conflict here?
The conflict is that in some autistic adults, we have taught them bad habits. "You see it my way, or you're wrong." Do you see that in some of the statements I've read about autistic adults? Yes, you do, I know you do because I specifically chose statements that would show that. But WAIT! Re-read what I wrote. It's in MY statements as well. Which mean, guess what? I have that exact same bad behavior myself. So do you. Don't deny it. Even the least judgmental most flexible person has this issue occasionally. It's HUMAN NATURE.
Where am I going with this? It's that acceptance is a two way street. We have to accept the autistic people in our lives, kid or adult, as a human being. That means they have bad habits and know-it-all attitudes, just like every other person, they are wrong sometimes, or they are right about what it was like for them, but not for everyone. Every autistic adult cannot speak for the mass population of autistic children.
If you've met one autistic person, then you've met one autistic person.
Autistic adults: I am not stopping OT & ST, I am not going to stop pushing my child to be the best that he can be, and I will most certainly NOT allow my son to bang his head on the cement wall no matter how good it might feel for him to do so. I also won't pretend a meltdown didn't happen. I want to give my son coping skills so they don't happen as often. Ignoring the problem helps with nothing.
But what I can promise you is that I realize that you've walked this path yourself, I will try to understand you and consider your advice. What I ask of you, is that you understand that my kid is my kid and may not respond to things you did. That you and I may see things very differently, but in the end, we all want the same thing. We're fighting the same battle. And in some ways, we're making the same mistakes. Black and white thinking does nothing positive for anyone.
And you know what, this applies to other parents of typical, autistic and other special needs kids. Just stop the inward bickering.
Wednesday, January 23, 2013
Monday, January 21, 2013
Let Him Eat Peas!
Goober has always been a good eater. We had one brief period when he was about a year old where he wouldn't eat and ended up dropping about 8 pounds, which was a very scary time for us. But he's usually ate very well. He's not always kept his food down. In fact, for the first 9 months of his life he threw everything he ate right back up. I swear to you I gave him twice as many bottles as he was supposed to have just to get something to stay down. Eventually we dropped formula, which was soy, and he stopped throwing up. But everyone says I'm crazy because I am sure he is lactose intolerant and I'm also sure he has issues with soy. It can't be both, they say. Bull. He's not touched soy since 12 months, and he hasn't thrown up like he used to since. We've severely cut back on his milk and his gas and tunny issues have lessened. We don't give him eggs, he doesn't get a rash. What does THAT tell you?
But I digress. My fury over the mediocrity that was his former doctors is a post for later days.
Goober has always ate what we put in front of him, not questions asked unless it was meat or mashed potatoes. The boy hates mashed potatoes and always has. And he's typical hotdogs and chicken nuggets when it comes to mean. But potatoes, fruits, veggies? Yes please! He loves him some fried rice and beef and broccoli minus the beef add carrots and peas, please. Black olives? Delicious. Green beans, peas, corn? Let him at it! Noodles? He loves them by the oodles. Popcorn? He can't wait for me to get the hulls out.
These past two weeks though, we've had a non-eater. No breakfast, no lunch, no snacks, no dinner. Everyone says he'll eat when he's hungry. But that didn't happen.
He wasn't completely without food. He'd eat a bit here and there. A french fry here. A chicken nugget there. But the most part, his food has met it's demise on the floor. Throwing his food has always been an issue with him, but it's gotten worse. Fork and spoon? Nu uh. By hand, and then it hits the floor.
Two weeks of maybe 3 french fries in a whole day. 2 chicken nuggets, a handful of green beans. I've been worried. He's not losing weight, and while I'm thankful, I have no idea how that happened. I do know that with the eating issues, we've seen a regression again. Sleep habits aren't great. He's refusing to drink from a cup again.
Last night, I had some progress. We had sloppy joes. I've been sitting with him while he eats, spoon feeding him like we did when he was younger. It doesn't usually go over very well, but I have to try it. Last night I got him to eat 1/4 of his sloppy joes, and to show interest in a fork, yeah!
Today he's eaten a handful of cheerios, half a peanut butter sandwich, and 23 a pack of grilled cheese crackers. Are we getting out good eater back?
Oh, and let's not forget the stinkbug he just ate of his spoon. I'm torn between "Good job, bud, for eating off a spoon" and "Ew, don't eat stinkbugs."
But I digress. My fury over the mediocrity that was his former doctors is a post for later days.
Goober has always ate what we put in front of him, not questions asked unless it was meat or mashed potatoes. The boy hates mashed potatoes and always has. And he's typical hotdogs and chicken nuggets when it comes to mean. But potatoes, fruits, veggies? Yes please! He loves him some fried rice and beef and broccoli minus the beef add carrots and peas, please. Black olives? Delicious. Green beans, peas, corn? Let him at it! Noodles? He loves them by the oodles. Popcorn? He can't wait for me to get the hulls out.
These past two weeks though, we've had a non-eater. No breakfast, no lunch, no snacks, no dinner. Everyone says he'll eat when he's hungry. But that didn't happen.
He wasn't completely without food. He'd eat a bit here and there. A french fry here. A chicken nugget there. But the most part, his food has met it's demise on the floor. Throwing his food has always been an issue with him, but it's gotten worse. Fork and spoon? Nu uh. By hand, and then it hits the floor.
Two weeks of maybe 3 french fries in a whole day. 2 chicken nuggets, a handful of green beans. I've been worried. He's not losing weight, and while I'm thankful, I have no idea how that happened. I do know that with the eating issues, we've seen a regression again. Sleep habits aren't great. He's refusing to drink from a cup again.
Last night, I had some progress. We had sloppy joes. I've been sitting with him while he eats, spoon feeding him like we did when he was younger. It doesn't usually go over very well, but I have to try it. Last night I got him to eat 1/4 of his sloppy joes, and to show interest in a fork, yeah!
Today he's eaten a handful of cheerios, half a peanut butter sandwich, and 23 a pack of grilled cheese crackers. Are we getting out good eater back?
Oh, and let's not forget the stinkbug he just ate of his spoon. I'm torn between "Good job, bud, for eating off a spoon" and "Ew, don't eat stinkbugs."
Sunday, January 6, 2013
Open Letter to my Family
Dear Family:
My son has classical autism. We're still trying to figure out where exactly he falls on the spectrum, but we know that he has autism. Yes, this diagnosis sucks, and I wish more than anything that my little boy didn't have to deal with everything he is going to have to deal with in his life. But this is the hand we are dealt and we have to learn to accept it and move forward. Searching for another answer to a question that always has a definitive answer is not productive at all. This is my life now. My son has autism. Accept it, accept him, accept us.
Everyday I have someone either questioning the diagnosis or asking how they can help. The first way you can help, is to stop questioning the diagnosis. I assure you, this was not come to lightly. I have taken the boy to some of the best doctors in the area for diagnosis. I didn't just accept the first opinion that I was given. I got a second, third, even fourth opinion on the matter. When his pediatrician said autism, I cried, right there in the office. My heart broke. I've always know something was off my little boy. His fine motor skills have never really developed. He doesn't make good eye contact. He doesn't digest his foods easily at all. He has phases where he cries when he pees. He cries in his sleep. He bangs his head against walls or the floor and laugh about it. He can parrot words back to you, but as for what he says spontaneously? Maybe a handful of words, and less of those are functional or communicative. Until very recently he wouldn't sleep until 3AM and that was an early bed time, waking up every half hour to two hours max, and when you put him to sleep he screamed bloody murder. His sleep is better, but still not where I'd like it to be. And now we can't get him to eat. He's two, and still on the bottle despite how hard we've tried to get him off. And he'll space out, and I don't know where he goes, which admittedly he gets from me. But you know what? I have seizures and randomly passout or no apparent reason. Him getting something from me is not exactly comforting.
What would you do if your child had this laundry list of issues? This isn't even all of it. This is just what comes to mind currently while my husband is talking to me about his computer game and flipping a coin in front of me. So you ask me what you can do for us. You can accept the diagnosis and the struggles we are going through right now. If the diagnosis changes, whoopie, we'll let you know and you can accept that one too! You can support us. Not just in this, but as people too. You can include us in family things. We might have to make accommodations, like at Christmas when we had the boy in his high chair, but we like to be included too. And you can give us a break every once in a while. A couple hours of autism free time.
Guys, I'm going to be honest here. I'm lost. I don't even remember who I am anymore. I honestly think I need to go back on my medicine because I've been dealing with the bipolar disorder for eleven years, but the depression is getting the best of me. I'm miserable, I don't even remember what it's like to be happy. I mean, truly, lasting happy. I still have moments. I love my son. I laugh, I smile, I enjoy things. But over all of it I'm waiting for the other shoe to drop. For the little bit of sunshine I've found to be covered over with clouds. And it always is. I look for a job knowing that income is needed, and thinking it will also help relieve some of the stress. If I don't have to worry about where the next dollar is coming from, and if I can get away for a few hours a day, maybe I'll be okay. And then the boy with run repeatedly into the wall and just laugh. And I think, what will I do with him? Who can handle that? Who can handle getting kicked in the face constantly during a diaper change? Or his self-harm and disturbing stims? I love him, but it's a lot to handle even for me. Will a daycare even take him? Oh god, what would he do the other children? What do I do!?!
I've lost so many of you, not that most of my family has ever given two craps about me to begin with. I was the mistake that ruined the golden boy's life. I get it. I'm not going to get into my personal demons and why I will never be able to trust anyone, form a real bond with anyone, and why I've struggled with low self-esteem and negative self-worth my whole life. That's a whole other story for a different day. We all have our stories, our issues, our secrets. But lately, what few family and friends I've managed over the years have all but disappeared. So those of you that are left, I need support. I can't do this on my own.
I know that this letter has been all over the place. I'm sorry. I'm giving you a glimpse of what it's like inside my head. I have a million thoughts a minute running through my mind. I'm emotional exhausted. I'm depressed. It's a cycle I can't be free of. And sometimes it's scary. Yes, I'm scared. I'm scared of the autism and how it's affecting our lives. I'm scared of my own mind set. I'm scared that the future is set up for failure already, and that there is nothing I can do to fix it. I'm scared that no matter what progress we make it will never be enough. I'm tired of being strong and pushing through this and doing the best I can. I want to just stop. But I don't have that option. I have a little boy with more than he should have to deal with on his plate. I need to be strong. I'm breaking, maybe already broken, but I need to hold it together for him. Because I might not be able to do this on my own, but he can't do this without me. So, with or without help, I have to find a way, because I can't let him down.
So family, what is it that I'm asking you? I ask you to remember that I'm just a person too. I deal with my demons just like you do. My major concerns may not be the same as what yours are, but they are just as devastating to me as yours are to you. I don't presume to have it worse than you. Please don't think that's what I'm saying. All I ask is acceptance, and maybe occasionally a kind word my way, a smile, understanding when I can barely muster the energy to do the basics, let alone anything extra. I'm trying. And most of all, love my son. He's your family too. Thank you to everyone who is already doing this, and will continue to do so.
So, what do I, as a mother of an ASD child and woman with bipolar disorder, expect of you? Support, understanding, compassion. So maybe we all expect just a little too much of others.
Sincerely,
Me.
P.S.- What was the point of this? I wanted to give you a look inside my mind.
My son has classical autism. We're still trying to figure out where exactly he falls on the spectrum, but we know that he has autism. Yes, this diagnosis sucks, and I wish more than anything that my little boy didn't have to deal with everything he is going to have to deal with in his life. But this is the hand we are dealt and we have to learn to accept it and move forward. Searching for another answer to a question that always has a definitive answer is not productive at all. This is my life now. My son has autism. Accept it, accept him, accept us.
Everyday I have someone either questioning the diagnosis or asking how they can help. The first way you can help, is to stop questioning the diagnosis. I assure you, this was not come to lightly. I have taken the boy to some of the best doctors in the area for diagnosis. I didn't just accept the first opinion that I was given. I got a second, third, even fourth opinion on the matter. When his pediatrician said autism, I cried, right there in the office. My heart broke. I've always know something was off my little boy. His fine motor skills have never really developed. He doesn't make good eye contact. He doesn't digest his foods easily at all. He has phases where he cries when he pees. He cries in his sleep. He bangs his head against walls or the floor and laugh about it. He can parrot words back to you, but as for what he says spontaneously? Maybe a handful of words, and less of those are functional or communicative. Until very recently he wouldn't sleep until 3AM and that was an early bed time, waking up every half hour to two hours max, and when you put him to sleep he screamed bloody murder. His sleep is better, but still not where I'd like it to be. And now we can't get him to eat. He's two, and still on the bottle despite how hard we've tried to get him off. And he'll space out, and I don't know where he goes, which admittedly he gets from me. But you know what? I have seizures and randomly passout or no apparent reason. Him getting something from me is not exactly comforting.
What would you do if your child had this laundry list of issues? This isn't even all of it. This is just what comes to mind currently while my husband is talking to me about his computer game and flipping a coin in front of me. So you ask me what you can do for us. You can accept the diagnosis and the struggles we are going through right now. If the diagnosis changes, whoopie, we'll let you know and you can accept that one too! You can support us. Not just in this, but as people too. You can include us in family things. We might have to make accommodations, like at Christmas when we had the boy in his high chair, but we like to be included too. And you can give us a break every once in a while. A couple hours of autism free time.
Guys, I'm going to be honest here. I'm lost. I don't even remember who I am anymore. I honestly think I need to go back on my medicine because I've been dealing with the bipolar disorder for eleven years, but the depression is getting the best of me. I'm miserable, I don't even remember what it's like to be happy. I mean, truly, lasting happy. I still have moments. I love my son. I laugh, I smile, I enjoy things. But over all of it I'm waiting for the other shoe to drop. For the little bit of sunshine I've found to be covered over with clouds. And it always is. I look for a job knowing that income is needed, and thinking it will also help relieve some of the stress. If I don't have to worry about where the next dollar is coming from, and if I can get away for a few hours a day, maybe I'll be okay. And then the boy with run repeatedly into the wall and just laugh. And I think, what will I do with him? Who can handle that? Who can handle getting kicked in the face constantly during a diaper change? Or his self-harm and disturbing stims? I love him, but it's a lot to handle even for me. Will a daycare even take him? Oh god, what would he do the other children? What do I do!?!
I've lost so many of you, not that most of my family has ever given two craps about me to begin with. I was the mistake that ruined the golden boy's life. I get it. I'm not going to get into my personal demons and why I will never be able to trust anyone, form a real bond with anyone, and why I've struggled with low self-esteem and negative self-worth my whole life. That's a whole other story for a different day. We all have our stories, our issues, our secrets. But lately, what few family and friends I've managed over the years have all but disappeared. So those of you that are left, I need support. I can't do this on my own.
I know that this letter has been all over the place. I'm sorry. I'm giving you a glimpse of what it's like inside my head. I have a million thoughts a minute running through my mind. I'm emotional exhausted. I'm depressed. It's a cycle I can't be free of. And sometimes it's scary. Yes, I'm scared. I'm scared of the autism and how it's affecting our lives. I'm scared of my own mind set. I'm scared that the future is set up for failure already, and that there is nothing I can do to fix it. I'm scared that no matter what progress we make it will never be enough. I'm tired of being strong and pushing through this and doing the best I can. I want to just stop. But I don't have that option. I have a little boy with more than he should have to deal with on his plate. I need to be strong. I'm breaking, maybe already broken, but I need to hold it together for him. Because I might not be able to do this on my own, but he can't do this without me. So, with or without help, I have to find a way, because I can't let him down.
So family, what is it that I'm asking you? I ask you to remember that I'm just a person too. I deal with my demons just like you do. My major concerns may not be the same as what yours are, but they are just as devastating to me as yours are to you. I don't presume to have it worse than you. Please don't think that's what I'm saying. All I ask is acceptance, and maybe occasionally a kind word my way, a smile, understanding when I can barely muster the energy to do the basics, let alone anything extra. I'm trying. And most of all, love my son. He's your family too. Thank you to everyone who is already doing this, and will continue to do so.
So, what do I, as a mother of an ASD child and woman with bipolar disorder, expect of you? Support, understanding, compassion. So maybe we all expect just a little too much of others.
Sincerely,
Me.
P.S.- What was the point of this? I wanted to give you a look inside my mind.
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