Not everything is about autism.
So, my oldest son, Nathan? He weighed 3 pounds when we brought him home from the hospital. Yeah, he was early..by about six weeks. He spent some time in the NICU (neontal ICU) and had an IV and breathing tubes and all that. The thing was, he kept pulling the breathing tubes out. Over and over. Finally the doctor said, Fine...let's see how he does without them. And he breathed. On his own. Such a determined little spirit in such a tiny body.
He thrived. When he was a toddler he was a sturdy little boy, with giant blue eyes and cute little cheeks. Everywhere I went, women would flock around him and say, "Hello cutie" or "Hello handsome" and make a big deal about him. You love all of your children, as a mother. The first is a little different, just because that one is your first...the guinea pig, the trial by fire.
So the other day Nathan comes to me and he says, Mom, I need some deoderant.
What??? You don't need any deoderant! I screech in my head. You're like, three!!
But no. He isn't three. He's eleven, and he'll be twelve in October. Girls are already sending their friends to him, asking if he likes so and so, he's already starting to hang with his friends in the neighborhood on the weekends more than he's spending time at home. When I wasn't looking, he grew up a little, and it's only going to go by faster and faster until one day, he'll be calling me: Mom, I'm coming over this weekend. I want you to meet someone. God help me.
But you know what? I love it. It IS bittersweet, watching this baby turn into a young man and knowing that I will never have that time back. But, it would be futile for me to try to preserve those babyish tendencies in him. It would do more harm than good for me to try and keep him tethered close to me, clinging to the last vestiges of this little boy when this brilliant young man is ready to emerge. I love watching him grow up. I love watching the person he is going to become.
But, I'll tell you. At night, when he's asleep...I tiptoe into his room. I watch the rise and fall of his chest to make sure he's breathing, for crying out loud. I smooth back his hair and sometimes, if he's very, very asleep, I give him a kiss. And I whisper, Mommy loves you. And if I'm very, very lucky, sometimes, in a sleepy voice, that sounds an awful lot like the little boy he is leaving behind, he will whisper back, "I love you too, mama."
Saturday, March 24, 2012
Thursday, March 22, 2012
People Live Here
When I first got married and we got our first house, I had a really specific idea of what the house should look like. It had to have this wallpaper and that shade of paint, and the furniture had to be arranged this certain way. These particular pictures had to be on the wall and I was never happy, or satisfied, because I always saw room for improvement.
I can honestly say I have lost that point of view. Completely. When we moved to the house we're in now, it was stuck in a mid-70's time warp. The rooms were all closed off from each other, there was paneling lining the walls of the family room, and the carpet was, to put it delicately, freakin' nasty. I had Nathan and Sarah when we moved in here and Logan was just a baby...his autism had not begun to emerge yet. I can say that the biggest things we did were put a fresh coat of paint in some rooms, replace the carpet with bamboo due to Nathan's allergies, and knock down a wall between the family room and dining room. I removed part of the paneling (and now I wish I hadn't), and then things sort of creaked to a standstill. Logan grew. His autism emerged. We were caught up in everything that life threw at us...figuring out what was wrong with our youngest son, parenting all three kids...we were busy. I slowly let go of the need to have coordinating curtains and throw pillows. I tolerated the half-finished walls in the family room. It just wasn't a priority anymore.
The other thing I struggled with was just keeping the house clean. I thrive on order. When the housework goes downhill, my mood goes with it. My children were like three little Tasmanian devils, whirling through the day, leaving toys and candy wrappers in their wake. Clutter piled up. Dirty dishes and rank laundry seemed to breed out of control and my frustration grew.
Until.
Until one day when my friend Caroline came over for a visit. Caroline...I've mentioned her before. She lives around the corner from me and she is an honest to gosh child of the 60's. I love her. She's sassy and funny and cuts through BS like a katana through butter. She sat in my living room and we talked about whatever...I don't remember now. What I do remember is complaining to her that I was stressed, and apologizing for the house being in a mess. I also remember her looking at me like I had lost all my marbles:
"Don't apologize for that!" she said.
"Well, it's really messy," I said.
"Who cares? Listen, this is just how it is! You're busy! You've got kids! Hell, people LIVE here!!"
Oh. People live here?? You mean I am not trapped in a magazine spread, where every surface has to be kept free of dust, where dishes are meant to be admired and not eaten off of, where the sofa and loveseat and even the gosh darn curtains had better be crisp and clean and smell like roses??
I know, it's stupid. Of course, it's not a magazine spread. But I had had that mind-set for so long. That everything had to be perfect. Listening to her say that, I felt this weight just lift off of me. And I learned to forgive myself for one more human thing I was doing...trying to raise three kids, one of them a very needy child, and keep things as normal as possible at the same time.
Now we have a baby in the house. And the clutter and the laundry are piling up again...because Miss Abby, my newest little one...she demands attention. She likes to be held. She likes to be paid attention to. Who doesn't? So. I look at the random things scattered and stacked throughout the house...papers and laundry and books and t-shirts. Empty cups, a package of cookies. Shoes, not on the shoe rack. Candy wrappers and random doo-dads. Our lives, strewn throughout the house in all their glory. I look at these things and my bad self, the one who likes to give me a hard time and tell me I'm not doing a great job...she stands there with her hands on her hips and says, "What are you doing?" And I glance at all these things on the floor and the countertops, these things that can wait another day, they aren't going anywhere, and then I smile. "I'm living, baby. We all are."
I can honestly say I have lost that point of view. Completely. When we moved to the house we're in now, it was stuck in a mid-70's time warp. The rooms were all closed off from each other, there was paneling lining the walls of the family room, and the carpet was, to put it delicately, freakin' nasty. I had Nathan and Sarah when we moved in here and Logan was just a baby...his autism had not begun to emerge yet. I can say that the biggest things we did were put a fresh coat of paint in some rooms, replace the carpet with bamboo due to Nathan's allergies, and knock down a wall between the family room and dining room. I removed part of the paneling (and now I wish I hadn't), and then things sort of creaked to a standstill. Logan grew. His autism emerged. We were caught up in everything that life threw at us...figuring out what was wrong with our youngest son, parenting all three kids...we were busy. I slowly let go of the need to have coordinating curtains and throw pillows. I tolerated the half-finished walls in the family room. It just wasn't a priority anymore.
The other thing I struggled with was just keeping the house clean. I thrive on order. When the housework goes downhill, my mood goes with it. My children were like three little Tasmanian devils, whirling through the day, leaving toys and candy wrappers in their wake. Clutter piled up. Dirty dishes and rank laundry seemed to breed out of control and my frustration grew.
Until.
Until one day when my friend Caroline came over for a visit. Caroline...I've mentioned her before. She lives around the corner from me and she is an honest to gosh child of the 60's. I love her. She's sassy and funny and cuts through BS like a katana through butter. She sat in my living room and we talked about whatever...I don't remember now. What I do remember is complaining to her that I was stressed, and apologizing for the house being in a mess. I also remember her looking at me like I had lost all my marbles:
"Don't apologize for that!" she said.
"Well, it's really messy," I said.
"Who cares? Listen, this is just how it is! You're busy! You've got kids! Hell, people LIVE here!!"
Oh. People live here?? You mean I am not trapped in a magazine spread, where every surface has to be kept free of dust, where dishes are meant to be admired and not eaten off of, where the sofa and loveseat and even the gosh darn curtains had better be crisp and clean and smell like roses??
I know, it's stupid. Of course, it's not a magazine spread. But I had had that mind-set for so long. That everything had to be perfect. Listening to her say that, I felt this weight just lift off of me. And I learned to forgive myself for one more human thing I was doing...trying to raise three kids, one of them a very needy child, and keep things as normal as possible at the same time.
Now we have a baby in the house. And the clutter and the laundry are piling up again...because Miss Abby, my newest little one...she demands attention. She likes to be held. She likes to be paid attention to. Who doesn't? So. I look at the random things scattered and stacked throughout the house...papers and laundry and books and t-shirts. Empty cups, a package of cookies. Shoes, not on the shoe rack. Candy wrappers and random doo-dads. Our lives, strewn throughout the house in all their glory. I look at these things and my bad self, the one who likes to give me a hard time and tell me I'm not doing a great job...she stands there with her hands on her hips and says, "What are you doing?" And I glance at all these things on the floor and the countertops, these things that can wait another day, they aren't going anywhere, and then I smile. "I'm living, baby. We all are."
Wednesday, March 21, 2012
Sometimes You Will Want to Craigslist Them
So, of course you may have noticed that some time has passed since my last post. Well....quick rundown...our family has increased by one. Yes, we had a baby, and she is beautiful. She is well, we are all well, and that, in and of itself, is a blessing. More on that later.
When I started this blog, it was with the intention of providing a completely unvarnished look at what life is like, raising an autistic child. I've spoken with other parents, and the relief on their faces when we compare experiences is priceless and also heartbreaking: Oh, your son does that too?? I thought it was just us! It's almost as if they are saying, Oh, thank God, we thought we were strange and different. We thought no one could possibly understand!
So, trying to stay true to that original intention of being honest and providing a snapshot of life with an autistic child, I will now talk about something that parents don't really want to mention: Sometimes, it really is almost too much. Sometimes, you feel like you've had enough and that you can't take it anymore. You wonder, really, if your hair can turn any grayer, if perhaps, YOU need to go to the doctor and get a Xanax, and the question WILL enter your brain, Can we put him on Craigslist?
Seriously, I would never put my son on Craigslist. I love my son. I've written at length about his sweet nature, his progress, the joy of discovering his blossoming personality. But I would be lying if I didn't admit that we do have those days, when we forget all of that, because he is simply out of control.
Now, autistic children always do things for a reason. The seemingly random noises they make, the odd behaviors and actions that don't make sense in the "normal" world...there is a reason why that child is doing that. My husband, just this morning (actually it may have been last night...I have no idea. Days and nights kind of blur together when you have a new baby!) told me about an autistic girl who learned how to type on a keyboard. In doing that, her parents discovered that A)she was not mentally retarded and B)she made loud noises to drown out all the other noise that was entering her head...in other words, it gave her just ONE noise to focus on instead of having a whole plethora of sound competing for her attention. That being said, yes...there are some days when I want to look Logan in the eye and say, "For God's sake. Please. Please be quiet. Please don't say anything. Please don't yell. Please STOP MAKING THAT NOISE/SAYING THAT PHRASE/BANGING THAT THING OVER AND OVER AGAIN!!!!"
It doesn't work, of course. I've discovered, through painful trial and error, that trying to get Logan to stop that particular brand of stimming is counterproductive. It agitates him, to have his "noise" taken away. He thinks he is being punished, he screams that he will be good, he threatens to "get" his big sister...and it escalates into an episode of difficult behavior that takes forever to calm down. In the end, it's easier to let him make noise, say the same phrases over and over and most of the time, bang whatever the heck he is banging on the floor. And yes, there have been many times, when I wanted to pull out a suitcase and head for the hills just for a day or a weekend, and yes, there have been times when the noise has given me a migraine, and NO, it does NOT make me a bad mother that I feel this way! Why? Because, good people..I am human. I think for a lot of parents, especially parents of special needs children...they feel like they can't talk about this issue or admit to these kinds of feelings. Perhaps they feel it makes them less of a parent, or it reflects badly on them. We're supposed to be ever-tolerant and patient with our special kiddos, right? We're supposed to have a well-spring of goodness and love, a never ending supply of gentle good spirits, even in the face of such trying behavior...right?
Wrong.
I am here to dispel that myth...because it IS a myth. I am sure that somewhere there are parents like that. I am sure that they are a rare breed. Where ever they are, I applaud them, and if I ever meet them, I want their autograph. But I am not speaking to them right now. I am speaking to the mom who picks up her kid from school every day, who watches her son try to hurt himself when he gets too agitated. I am speaking to the dad who clenches his jaw shut tight to keep himself from screaming in frustration. I am speaking to parents everywhere, who have endured the headaches that come from vocal stimming...who have installed a lock on every door and window and still worry that it's not enough to keep their autistic child from escaping into the street...I am speaking to those parents, who, exhausted and heartbroken from dealing with a particularly trying bout of frustrating behavior, break down in tears and question why the good Lord gave this child to them, because they don't feel adequate enough to rise to the challenge of raising such a child, who cry because this is not what they planned on, having this kind of child...but they keep going anyway, because nobody..and I mean nobody...will ever love or understand that child as well as them. These are the parents I am talking to and I am telling them...you have a day where you want to run screaming into the night, you want to pack a bag and escape for a day, you want to give up and just stop because you feel like you just can't go anymore? I'm telling them, I'm telling you...it's okay. It's not wrong to feel that way. You're not the only one. And I want to say I admire you, because I know that after you cry, or let those angry feelings burn through you...I admire you because I know that you will pick yourself up, and go forward, because that's what parents do.
So...how do I deal with all the noise? Because with Logan, that has become the main thing that is the most trying in our lives. The constant noise. Sometimes, if it becomes too much or gets too loud, I send him to bed. He doesn't stay in bed. That's not the point. The point is that we took an action in response to a behavior that we viewed as negative. More often than not, this will calm him down once he realizes, Crap, mom and dad are serious...I better tone it down. A smidge. Sometimes, I mimic him. He hates it. If he's making a particular noise or saying a particular phrase...I say it back. Depending on his mood, he thinks this is funny or it really pisses him off. Either way, it distracts him from doing it. And then there's always the old "redirecting" gambit...trying to distract him with something else so he'll forget about what he was doing. We use that the least. And then, when all else has failed and he just needs to make noise and we can't do anything about it...I ignore it. It's hard to do. Especially when he gets so loud I can't hear what my husband is saying to me when he's standing right in front of me...but I'm getting better at it. We all have ways that we cope. And my hair? It's not completely gray. Yet.
When I started this blog, it was with the intention of providing a completely unvarnished look at what life is like, raising an autistic child. I've spoken with other parents, and the relief on their faces when we compare experiences is priceless and also heartbreaking: Oh, your son does that too?? I thought it was just us! It's almost as if they are saying, Oh, thank God, we thought we were strange and different. We thought no one could possibly understand!
So, trying to stay true to that original intention of being honest and providing a snapshot of life with an autistic child, I will now talk about something that parents don't really want to mention: Sometimes, it really is almost too much. Sometimes, you feel like you've had enough and that you can't take it anymore. You wonder, really, if your hair can turn any grayer, if perhaps, YOU need to go to the doctor and get a Xanax, and the question WILL enter your brain, Can we put him on Craigslist?
Seriously, I would never put my son on Craigslist. I love my son. I've written at length about his sweet nature, his progress, the joy of discovering his blossoming personality. But I would be lying if I didn't admit that we do have those days, when we forget all of that, because he is simply out of control.
Now, autistic children always do things for a reason. The seemingly random noises they make, the odd behaviors and actions that don't make sense in the "normal" world...there is a reason why that child is doing that. My husband, just this morning (actually it may have been last night...I have no idea. Days and nights kind of blur together when you have a new baby!) told me about an autistic girl who learned how to type on a keyboard. In doing that, her parents discovered that A)she was not mentally retarded and B)she made loud noises to drown out all the other noise that was entering her head...in other words, it gave her just ONE noise to focus on instead of having a whole plethora of sound competing for her attention. That being said, yes...there are some days when I want to look Logan in the eye and say, "For God's sake. Please. Please be quiet. Please don't say anything. Please don't yell. Please STOP MAKING THAT NOISE/SAYING THAT PHRASE/BANGING THAT THING OVER AND OVER AGAIN!!!!"
It doesn't work, of course. I've discovered, through painful trial and error, that trying to get Logan to stop that particular brand of stimming is counterproductive. It agitates him, to have his "noise" taken away. He thinks he is being punished, he screams that he will be good, he threatens to "get" his big sister...and it escalates into an episode of difficult behavior that takes forever to calm down. In the end, it's easier to let him make noise, say the same phrases over and over and most of the time, bang whatever the heck he is banging on the floor. And yes, there have been many times, when I wanted to pull out a suitcase and head for the hills just for a day or a weekend, and yes, there have been times when the noise has given me a migraine, and NO, it does NOT make me a bad mother that I feel this way! Why? Because, good people..I am human. I think for a lot of parents, especially parents of special needs children...they feel like they can't talk about this issue or admit to these kinds of feelings. Perhaps they feel it makes them less of a parent, or it reflects badly on them. We're supposed to be ever-tolerant and patient with our special kiddos, right? We're supposed to have a well-spring of goodness and love, a never ending supply of gentle good spirits, even in the face of such trying behavior...right?
Wrong.
I am here to dispel that myth...because it IS a myth. I am sure that somewhere there are parents like that. I am sure that they are a rare breed. Where ever they are, I applaud them, and if I ever meet them, I want their autograph. But I am not speaking to them right now. I am speaking to the mom who picks up her kid from school every day, who watches her son try to hurt himself when he gets too agitated. I am speaking to the dad who clenches his jaw shut tight to keep himself from screaming in frustration. I am speaking to parents everywhere, who have endured the headaches that come from vocal stimming...who have installed a lock on every door and window and still worry that it's not enough to keep their autistic child from escaping into the street...I am speaking to those parents, who, exhausted and heartbroken from dealing with a particularly trying bout of frustrating behavior, break down in tears and question why the good Lord gave this child to them, because they don't feel adequate enough to rise to the challenge of raising such a child, who cry because this is not what they planned on, having this kind of child...but they keep going anyway, because nobody..and I mean nobody...will ever love or understand that child as well as them. These are the parents I am talking to and I am telling them...you have a day where you want to run screaming into the night, you want to pack a bag and escape for a day, you want to give up and just stop because you feel like you just can't go anymore? I'm telling them, I'm telling you...it's okay. It's not wrong to feel that way. You're not the only one. And I want to say I admire you, because I know that after you cry, or let those angry feelings burn through you...I admire you because I know that you will pick yourself up, and go forward, because that's what parents do.
So...how do I deal with all the noise? Because with Logan, that has become the main thing that is the most trying in our lives. The constant noise. Sometimes, if it becomes too much or gets too loud, I send him to bed. He doesn't stay in bed. That's not the point. The point is that we took an action in response to a behavior that we viewed as negative. More often than not, this will calm him down once he realizes, Crap, mom and dad are serious...I better tone it down. A smidge. Sometimes, I mimic him. He hates it. If he's making a particular noise or saying a particular phrase...I say it back. Depending on his mood, he thinks this is funny or it really pisses him off. Either way, it distracts him from doing it. And then there's always the old "redirecting" gambit...trying to distract him with something else so he'll forget about what he was doing. We use that the least. And then, when all else has failed and he just needs to make noise and we can't do anything about it...I ignore it. It's hard to do. Especially when he gets so loud I can't hear what my husband is saying to me when he's standing right in front of me...but I'm getting better at it. We all have ways that we cope. And my hair? It's not completely gray. Yet.
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