I have slowly been telling people about Emerson's diagnosis. Family, co-workers, close friends...I've tried to contact those who matter to me; those whose support I can rely on and who will not judge Emerson or judge us. Because, believe it or not, even in this day and age, I've already run across a few people who have told me that they've met Emerson and he just needs a good swat on the rear end, that Thom and I weren't strong enough in our marriage to provide decent discipline to our children, and that we were seeking a diagnosis to find something wrong with him so we wouldn't have to take any blame for not having the right parenting skills.
Yes, indeedy.
While I can't very well tell these people that their ignorant, uninformed and misguided comments are neither desired nor appreciated, I can try to educate them...as long as their open to that education. Considering the nature of their initial comments, I'm thinking not. But that doesn't stop me from trying. If anything, they'll get so sick of hearing me spout off about autism, Emerson in regards to autism, new articles I've read about autism, people I have contacted about Emerson and autism, books that I'm reading about autism, etc, that they will just shut their mouths. And that, my friends, is what I call a win-win situation!
Others have expressed their regret, their sympathy, their sorrow that this is something our family has to deal with. To them, I say thank you for your concern, but don't feel too bad for us. While I appreciate the fact that they commiserate with us and that they recognize that it's not going to be the easiest road to travel, it's really not as bad as all that.
Up until now, I always felt that maybe I wasn't cut out to be a mother or that I just didn't know how the hell to parent effectively. Parenting Emerson just seemed so hard. I always felt like I was struggling or that what I was doing was not getting through, therefore I was doing it wrong. Now, however, I know that it wasn't me. This started after Parker was born, really. Parker was so different than Emerson as a baby. I know each child is different because of personality, experience, what have you, but Parker was so easy. We wondered how we didn't recognize that there was something a little off with Emerson long before now because the difference between the two of them is sometimes astounding. (And I have to remind Thom that I did see something wrong...I just lacked the support.) We were joking with my parents just this weekend that it seems as if Parker came with an instruction manual whereas Emerson did not; that Parker came with all programs installed that just need to be activated at the appropriate time. With Emerson.... <whooooof> (big gust of air being expelled as I sigh)...everything was a fight, everything was a challenge.
Now, wait. Let me take that back and clarify it. Not everything was a fight or a challenge. Some things were very easy compared to Parker. Eating, for example. Emerson ate whatever we gave him and preferred vegetables. My parents marveled to see an 18 month old asking for avocado slices. Parker---we can hide a pea mashed into a big spoonful of cheesy mashed potatoes and that kid will find the pea and spit it back out while swallowing the potatoes. Learning colors and shapes and learning to talk is another example. Emerson spoke well, knew his colors and shapes very early on. For Parker, if it doesn't have wheels and go-go-go, he couldn't care less about it.
But sleeping was, and still is, a huge problem. No matter what we've tried--and we've tried just about everything I've ever heard of or read about--Emerson has NEVER slept through the night. Parker? Put him down at 7:30pm and he'll sleep stright through until 7 the next morning if you let him. Same story with naps....very rarely a problem for the little one while the big one resists even as he yawns.
Discipline and following directions is the biggie, however. It seemed as if Emerson would never do what we asked; Parker does so right away and we still marvel at how well he listens and does as he's told. When Emerson did something he wasn't supposed to do, we would put him in time out. When time outs didn't work or if the behavior continued, he'd get a spanking. We kept wondering why he continued with the same bad behavior over and over and over when we told him over and over and over that what he did was wrong and why it was wrong. We really did think that he was naughty, wilfull, disobedient, what have you. Now we know that, at least for some of the things he did/does is part of his autism and lack of social understanding. He really doesn't know that what he's doing is wrong and can't understand why it isn't appropriate behavior. That whole concept is beyond his grasp at this point.
Ex. Emerson shoves Clayton on the playground and gets time out for it. Later on, he does it again and gets time out a second time. He's told that it's not OK to shove someone, it's hurts that person and is not nice behavior. Emerson doesn't understand that. He doesn't recognize that other people have the same feelings as he does. To him, Clayton did something that affected him and the natural response was to remove that obtrusion...in other words, shove him out of the way. When he's questioned about why he did it--and after he understands what you're asking because he doesn't comprehend questions very well--it comes out that Clayton ran through Emerson's elephant pen, which upset Emerson because he took a lot of time to build it. you can explain to Emerson than Clayton did it unintentionally, but Emerson doesn't understand that. He also doesn't understand that he could have told Clayton to be careful and show him where the pen was so it wouldn't happen again.
He lacks the social skills necessary to deal with situations auch as this one. Part of this is his young age, yes, but part of it is the autism. It's difficult to determine, at this point, where one leaves off and the other begins. And I think that's what makes it so difficult for some people to understand. Yes, this sounds like a little boy who is just being wilfull and not being very kind to a playmate. But, while it might be the case with other children, Emerson is unable to put himself in their shoes. He can't imagine why shoving someone might hurt them. It's something he has to be taught...a social skill that he has to learn is not socially acceptable. It does come naturally as it would with another child.
Emerson was constantly getting in trouble at home or in daycare for things similar to the one above, and Thom and I feel terrible about all the spankings we gave him now that we understand that this wasn't Emersons fault. Now we, and the daycare, strive to explain what kind of behavior is acceptable and what kinds of responses are expected of him in certain situations. We go over the same things time and time again, but instead of wondering Why do I have to repeat this 50 times over...why hasn't he just gotten the message already??? we look at it more along the lines of Every time I teach this to him, it will add another thread onto the cord until he finally "gets it" enough to be able to function. Totally different attitude on our part results in a totally different experience for all of us. It's much less frustrating for us and more beneficial for Emerson.
But that doesn't mean I'm still not haunted by that look on his face when we'd tell him he was going to get a spanking for something he did wrong; that look that--and how did we not recognize it then--asks me, "But what did I do so wrong that I'm being spanked?" It breaks my heart.
But back to the topic at hand...people feeling sorry for us and commenting that they wish it wasn't so. In a perfect world--No, our son wouldn't have autism. In a perfect world I'd have perfect skin, hair that did what I wanted it to do and a smokin' hot body! But we don't live in a perfect world, and that's OK.
This diagnosis doesn't change anything about Emerson or about us. It doesn't change the fact that he's smart, funny, kind, well-mannered, friendly and helpful. It doesn't change that we still get frustrated, angry, and impatient right along with feeling proud, impressed, hopeful, and completely in love with our son. What is does change is our approach to teaching him, to discipling him. It changes the way I feel about myself as a mother. No longer do I feel inadequate or question my abilities...now I know why it is and has been so difficult to parent Emerson.
Most importantly, what this diagnosis has done for us is give us new insight, new understanding into our son's mind. It has given us a term for his quirky nature, a direction to move in when it comes to helping him. It has given us the chance to learn and to grow not only as parents, but as responsible human beings. And, for the first time, I know where to look in order to research, learn and seek help.
And throughout it all, Emerson is still Emerson.
Would I take away his autism, if I could? I doubt it. The aspects of autism are so tied into who he is, like I said before, it's hard to say where the autism leaves off and his "normal" personality begins. If he wasn't autistic, would his memory be quite so outstanding? Would he be so smart? So polite and well-mannered? Would he have the same sense of humor? Would he be as well-loved by classmates and teachers alike? Would he be so caring and protective of Parker? If he didn't have autism, would he be Emerson?? No.
Like it or lump it, autism is a part of who Emerson is. And that's something I wouldn't change for anything.
While I can't very well tell these people that their ignorant, uninformed and misguided comments are neither desired nor appreciated, I can try to educate them...as long as their open to that education. Considering the nature of their initial comments, I'm thinking not. But that doesn't stop me from trying. If anything, they'll get so sick of hearing me spout off about autism, Emerson in regards to autism, new articles I've read about autism, people I have contacted about Emerson and autism, books that I'm reading about autism, etc, that they will just shut their mouths. And that, my friends, is what I call a win-win situation!
Others have expressed their regret, their sympathy, their sorrow that this is something our family has to deal with. To them, I say thank you for your concern, but don't feel too bad for us. While I appreciate the fact that they commiserate with us and that they recognize that it's not going to be the easiest road to travel, it's really not as bad as all that.
Up until now, I always felt that maybe I wasn't cut out to be a mother or that I just didn't know how the hell to parent effectively. Parenting Emerson just seemed so hard. I always felt like I was struggling or that what I was doing was not getting through, therefore I was doing it wrong. Now, however, I know that it wasn't me. This started after Parker was born, really. Parker was so different than Emerson as a baby. I know each child is different because of personality, experience, what have you, but Parker was so easy. We wondered how we didn't recognize that there was something a little off with Emerson long before now because the difference between the two of them is sometimes astounding. (And I have to remind Thom that I did see something wrong...I just lacked the support.) We were joking with my parents just this weekend that it seems as if Parker came with an instruction manual whereas Emerson did not; that Parker came with all programs installed that just need to be activated at the appropriate time. With Emerson.... <whooooof> (big gust of air being expelled as I sigh)...everything was a fight, everything was a challenge.
Now, wait. Let me take that back and clarify it. Not everything was a fight or a challenge. Some things were very easy compared to Parker. Eating, for example. Emerson ate whatever we gave him and preferred vegetables. My parents marveled to see an 18 month old asking for avocado slices. Parker---we can hide a pea mashed into a big spoonful of cheesy mashed potatoes and that kid will find the pea and spit it back out while swallowing the potatoes. Learning colors and shapes and learning to talk is another example. Emerson spoke well, knew his colors and shapes very early on. For Parker, if it doesn't have wheels and go-go-go, he couldn't care less about it.
But sleeping was, and still is, a huge problem. No matter what we've tried--and we've tried just about everything I've ever heard of or read about--Emerson has NEVER slept through the night. Parker? Put him down at 7:30pm and he'll sleep stright through until 7 the next morning if you let him. Same story with naps....very rarely a problem for the little one while the big one resists even as he yawns.
Discipline and following directions is the biggie, however. It seemed as if Emerson would never do what we asked; Parker does so right away and we still marvel at how well he listens and does as he's told. When Emerson did something he wasn't supposed to do, we would put him in time out. When time outs didn't work or if the behavior continued, he'd get a spanking. We kept wondering why he continued with the same bad behavior over and over and over when we told him over and over and over that what he did was wrong and why it was wrong. We really did think that he was naughty, wilfull, disobedient, what have you. Now we know that, at least for some of the things he did/does is part of his autism and lack of social understanding. He really doesn't know that what he's doing is wrong and can't understand why it isn't appropriate behavior. That whole concept is beyond his grasp at this point.
Ex. Emerson shoves Clayton on the playground and gets time out for it. Later on, he does it again and gets time out a second time. He's told that it's not OK to shove someone, it's hurts that person and is not nice behavior. Emerson doesn't understand that. He doesn't recognize that other people have the same feelings as he does. To him, Clayton did something that affected him and the natural response was to remove that obtrusion...in other words, shove him out of the way. When he's questioned about why he did it--and after he understands what you're asking because he doesn't comprehend questions very well--it comes out that Clayton ran through Emerson's elephant pen, which upset Emerson because he took a lot of time to build it. you can explain to Emerson than Clayton did it unintentionally, but Emerson doesn't understand that. He also doesn't understand that he could have told Clayton to be careful and show him where the pen was so it wouldn't happen again.
He lacks the social skills necessary to deal with situations auch as this one. Part of this is his young age, yes, but part of it is the autism. It's difficult to determine, at this point, where one leaves off and the other begins. And I think that's what makes it so difficult for some people to understand. Yes, this sounds like a little boy who is just being wilfull and not being very kind to a playmate. But, while it might be the case with other children, Emerson is unable to put himself in their shoes. He can't imagine why shoving someone might hurt them. It's something he has to be taught...a social skill that he has to learn is not socially acceptable. It does come naturally as it would with another child.
Emerson was constantly getting in trouble at home or in daycare for things similar to the one above, and Thom and I feel terrible about all the spankings we gave him now that we understand that this wasn't Emersons fault. Now we, and the daycare, strive to explain what kind of behavior is acceptable and what kinds of responses are expected of him in certain situations. We go over the same things time and time again, but instead of wondering Why do I have to repeat this 50 times over...why hasn't he just gotten the message already??? we look at it more along the lines of Every time I teach this to him, it will add another thread onto the cord until he finally "gets it" enough to be able to function. Totally different attitude on our part results in a totally different experience for all of us. It's much less frustrating for us and more beneficial for Emerson.
But that doesn't mean I'm still not haunted by that look on his face when we'd tell him he was going to get a spanking for something he did wrong; that look that--and how did we not recognize it then--asks me, "But what did I do so wrong that I'm being spanked?" It breaks my heart.
But back to the topic at hand...people feeling sorry for us and commenting that they wish it wasn't so. In a perfect world--No, our son wouldn't have autism. In a perfect world I'd have perfect skin, hair that did what I wanted it to do and a smokin' hot body! But we don't live in a perfect world, and that's OK.
This diagnosis doesn't change anything about Emerson or about us. It doesn't change the fact that he's smart, funny, kind, well-mannered, friendly and helpful. It doesn't change that we still get frustrated, angry, and impatient right along with feeling proud, impressed, hopeful, and completely in love with our son. What is does change is our approach to teaching him, to discipling him. It changes the way I feel about myself as a mother. No longer do I feel inadequate or question my abilities...now I know why it is and has been so difficult to parent Emerson.
Most importantly, what this diagnosis has done for us is give us new insight, new understanding into our son's mind. It has given us a term for his quirky nature, a direction to move in when it comes to helping him. It has given us the chance to learn and to grow not only as parents, but as responsible human beings. And, for the first time, I know where to look in order to research, learn and seek help.
And throughout it all, Emerson is still Emerson.
Would I take away his autism, if I could? I doubt it. The aspects of autism are so tied into who he is, like I said before, it's hard to say where the autism leaves off and his "normal" personality begins. If he wasn't autistic, would his memory be quite so outstanding? Would he be so smart? So polite and well-mannered? Would he have the same sense of humor? Would he be as well-loved by classmates and teachers alike? Would he be so caring and protective of Parker? If he didn't have autism, would he be Emerson?? No.
Like it or lump it, autism is a part of who Emerson is. And that's something I wouldn't change for anything.
Is it ok to post questions here? Or should I just send you an email?
ReplyDeleteMiss you!!!! Hope you & the family are well.
Post away, darlin'! Or e-mail...whichever.
ReplyDeleteAs I commented before, I read so much of what we went through in your words. But you know... as with me: Emerson is your first born. When I heard that our Kevin was born with autism and that there was nothing I had done wrong with raising him... that was my provebial straw and that camel. Our boy has language impairment: that brought us into the psych & testing world. We're librarians; we read a lot of books with our kids, so how was this possible. Not even the specialists could put a finger on it, we got the same reactions (well nearly) as you did. Like ‘Give us 5 min with your kid and I'll straighten him out' to 'You are imagining things, he's just a bit late with talking.' To hear that he's on the spectrum, to know that he's a visual thinker, that he processes information differently and yes, those bloody transitions. Just to know this made me look at my child immensely differently (and of course his sister is 'normal' but actually more than a handful than he ever was.
ReplyDeleteI am so glad that you have your Jennifer as I have my Christine: two wonderful, involved and kick ass friends who make that difference.