On Sunday, someone spoke in our church about not judging others. He went on to say that all of us have to form "intermediate judgements", but that final judgements should be left up to God.
I think what he was trying to say was that in our everyday lives, when we come into contact with people, we have to form opinions about them. Is this a person with whom I want to have contact on a regular basis? Is this a friend my child should have? Etc, etc. But he also said something else interesting: Judge the circumstances, not the person.
This is so hard to do, sometimes. We see something, and it appears to be inexcusable. We draw conclusions from it. It's human nature. But what if. What if what you are seeing is not how it really is. What if there is a reason for that person's behavior, or lack of communication, or rudeness. Can we excuse the behavior then? Well, people shouldn't be rude, and people should curb their anger...but could understanding the reason behind what they do perhaps help us all to be more compassionate and forgiving?
Why am I even writing about this? Before I had Logan, I was what I consider a "normal mom". I had two kids, seventeen months apart. I ran errands, cleaned my house, had a lot of friends (still do), and life was just...life. If I went into a store and I saw another child misbehaving or wreaking havoc, I would think this (and I am embarrassed to admit this, but I also know I am not the only one who has done it): What is wrong with that kid? Why won't that mom step in and do something? Why is she letting her son/daughter be so whiny and misbehave so much?
I don't think that way anymore. I mentioned that having a special-needs child gives you a certain perspective.
I was in a Wal-Mart a few months back, and I think I had my older son with me. Suddenly there was a piercing scream, and a little boy started bellowing, "Mommy, Mommy, stop, ow, you broke my arm! You broke my arm!" His screams and yells were so loud, and so berserk, that several people in the store stopped what they were doing and stared. The mother took the little boy in her arms and quickly made her way to the restroom.
Of course, I followed her. (sheepish grin)
She took him into the handicapped stall where he proceeded to indulge in a world-class meltdown. I don't think she knew I was in there at first. She never raised her voice. She calmly asked him to stop crying. She kept speaking to him in soothing tones. I recognized it for what it was: a temper tantrum. An out-of-control, over-sensitive child who could not get a handle on himself. I quietly asked her if she needed some help and she thanked me and said she was fine. I left.
It looked horrible. A mother who had possibly abused her son right there in Wal-Mart. But it wasn't what it looked like. His arm wasn't broken. I don't know what sparked his outrage, but it wasn't an enraged mother who had taken her anger out on him.
There have been many times when I took Logan out to the store or to a restaurant and my timing was off. He was too tired or he hadn't had enough to eat, or he was just overstimulated already. And he is an expert, just like that other little boy, at bellowing at the top of his lungs over and over, of reaching out and grabbing things he shouldn't, and just being a pill in general when he doesn't want to do something. I once took him to a grocery store and he didn't want to be there. But I really had to pick something up, and I thought, We'll be in and out, no problem. Heh. Well, in the checkout line, he jumped. He jumped up high enough that he could grab the large, dangling cardboard sign that was advertising a store promotion. And it fell. Off the ceiling. People stared (it's rude to stare!) and the checkout girl smiled at me and said in a sweet voice, "Is he just really hyper?" I looked at her and responded in the same tone, "Why, yes." (No, he really likes that sign, hanging from the ceiling, and he wants to take it home with him. Here is your sign. Thank you, Jeff Foxworthy.)
So, now, when I go to the store, or somewhere else, if I see a kid acting like that, even if they appear to be the worst kind of brat imaginable, I hold off on getting angry or making snap judgments about the parents. You don't know what that kid may have been through that day. You don't know what the parents may be going through, every day. And it's really better to take care of your own and make sure you are doing right by your own than to make it your business to label other people, weigh them, measure them, and find them wanting. Because we can all be found wanting, in some regard.
Wednesday, May 25, 2011
Tuesday, May 24, 2011
The Other Side of the Coin
Wow, I AM prolific tonight! I just re-read my post "What Would Einstein Do", and I have to add something to that.
While I think the testing scenario that Logan went through was a little pointless, I don't wish at all to discourage people from putting their children through testing. The other side of this coin is that this way of diagnosing children for autism or other disorders is all that we have at this present time. Hence my previous remark about "the dark ages". There is so much about spectrum disorders that we simply do not know or are just beginning to understand. And what we DO have is a comparison approach. Can we get Logan to do this thing or answer this question? Scientifically speaking, if he can't or won't do these things, we must assume that he is mentally deficient. Yes, there may be information locked in his head and he may actually be working out complicated math formulas as we speak while watching Curious George at the same time (yes, it can be done), but we have to go with what we see, and what we see is that he cannot do A, B, and C.
The point I was trying to make earlier is that there simply must be a better way to go about it. Until the powers that be come up with that better way, I do applaud physicians everywhere who reach out to families like ours and use the knowledge they do have to improve the lives of our children.
Can you tell we have a lawyer in the family?
After diagnosis the next best thing you can do is some forms of therapy. However, dear readers, this mom has done the following today: taken four kids to school and picked up five. (I always end up with extra kids in the van. I don't know how it happens. And I don't care. We live in a great neighborhood and my kids have a lot of friends. They all understand Logan and "get" him.) I have visited a sick relative. Packed up an apartment (not finished yet). Returned phone calls. Cleaned up a filthy dog. Watched said dog gaze around the house in wonder with a "retarded" look on his face because I finally trimmed the hair out of his eyes and he can see. Broken up a fight between two siblings. Paid a trip to the mall. Paid another trip to a craft store. Cooked dinner. Ate too much ice cream. And now it's about to tornado or something outside, whatever, all hell is about to break loose, and it's all good. Maybe we'll get to talk about emergency preparedness in the hall bathroom at three am again if the sirens go off. Goody.
While I think the testing scenario that Logan went through was a little pointless, I don't wish at all to discourage people from putting their children through testing. The other side of this coin is that this way of diagnosing children for autism or other disorders is all that we have at this present time. Hence my previous remark about "the dark ages". There is so much about spectrum disorders that we simply do not know or are just beginning to understand. And what we DO have is a comparison approach. Can we get Logan to do this thing or answer this question? Scientifically speaking, if he can't or won't do these things, we must assume that he is mentally deficient. Yes, there may be information locked in his head and he may actually be working out complicated math formulas as we speak while watching Curious George at the same time (yes, it can be done), but we have to go with what we see, and what we see is that he cannot do A, B, and C.
The point I was trying to make earlier is that there simply must be a better way to go about it. Until the powers that be come up with that better way, I do applaud physicians everywhere who reach out to families like ours and use the knowledge they do have to improve the lives of our children.
Can you tell we have a lawyer in the family?
After diagnosis the next best thing you can do is some forms of therapy. However, dear readers, this mom has done the following today: taken four kids to school and picked up five. (I always end up with extra kids in the van. I don't know how it happens. And I don't care. We live in a great neighborhood and my kids have a lot of friends. They all understand Logan and "get" him.) I have visited a sick relative. Packed up an apartment (not finished yet). Returned phone calls. Cleaned up a filthy dog. Watched said dog gaze around the house in wonder with a "retarded" look on his face because I finally trimmed the hair out of his eyes and he can see. Broken up a fight between two siblings. Paid a trip to the mall. Paid another trip to a craft store. Cooked dinner. Ate too much ice cream. And now it's about to tornado or something outside, whatever, all hell is about to break loose, and it's all good. Maybe we'll get to talk about emergency preparedness in the hall bathroom at three am again if the sirens go off. Goody.
What Would Einstein Do
Today, I was going to write about something like some of the other disabilities that can come with autism, or explain what an ARD meeting is, or something like that, but to be perfectly honest, faithful readers, I am way. Too. Tired.
I can hear (one) of my father-in-law's voices in my head right now: You have to take care of yourself. If you don't take care of yourself you can't take care of your kiddos. If you were in a plane and it was going down and the oxygen masks deployed, who would you put it on first? You would put it on you first, so that you would be awake and alert enough to be there for your kids.
I can't count the number of times he said this to me. When you're a mom, and you get busy, you think, yeah, yeah...I don't have time to eat, or take a nap, or whatever...and sometimes you don't. You get wrapped up in so many things and you forget about some stuff you always meant to do, and you decide that the leftover mac and cheese looks absolutely divine when you're running short on time for dinner. Pretty soon you feel really crummy, tired, and then the crankiness sets in. Or worse.
It's hard for people to understand what a family can go through when you have a special needs child. Normal parenting requires a lot of time and patience. It requires a lot of sacrifice and you learn how to deal with frustration and anger and disappointment. There are also moments when you realize the person receiving that award, or spiking that ball, or acing that test...hey, they are here because of you, and that person running around with your DNA is going to grow up to be somebody someday. Having a special needs child-autistic or otherwise...requires a little more. You give up a lot. You lose expectations of how your life was going to be. You gain a different perspective.
I won't go into all the boring details of the two days of testing we endured with Logan. Basically he was in a room with a diagnostician. We were disappointed to learn an intern would be testing our son and not the actual doctor we had spoken with. The room had different things in it...toys, books, blocks, etc. And she would ask Logan to do different things. Perform certain tasks. She would observe him playing. And here is what was concluded:
Severe autism, speech disorder, and mental retardation.
And here is where I sincerely and honestly believe we are still in the dark ages when it comes to autism. We don't know what causes it or why it happens. There are all kinds of theories. But there is one solid fact about autistic children that is true across the board: they thrive in structured environments. They are most secure when they know what to expect and when. They need thousands of times more reassurance than a normal, well-adjusted child. So you are going to take this child, who is prone to anxiety, aggression, temper tantrums, defiance, who cannot tell you if he is mad or sad or uncomfortable...and you are going to put him in an unfamiliar environment with an unfamiliar person that he has never met before and have him stay there half the day, and ask him to perform a variety of tasks that he does not normally perform on a day to day basis.
Lots of people think Einstein had some form of autism and it doesn't take an Einstein to figure out that the above scenario is a flaming bunch of B.S. I contend that if you want to really know what makes a child like this tick, then you need to observe the child, at home, in their normal routine; get to know the child, and spend more than eight to ten hours trying to reason out responses from a kid who probably doesn't want to be there in the first place.
Am I touchy because someone said my son was mentally retarded? Perhaps. Yes. No one ever wants to hear THAT about their own kid. I really like the way our diagnostician at the school put it: That their test showed that he was academically deficient, but that they did not believe that was true. Their belief was that there was a lot locked in that head of his, but that they had to go by what he chose to present to them. The GOOD thing about going to that particular doctor was that finally, finally we had an answer to the question: is our son autistic? And the answer was: Yes. So we knew what we were dealing with and we could go to the school and definitively say, this is what the deal is. Help us. And they have. Except for one unfortunate year when he had a teacher that was very ill-suited to working with him, he has had an exceptional time in our ISD. And it has always been because the classroom was super-organized, the schedule was planned...sometimes down to the minute, literally, and his teachers were unfailingly patient. If they dreaded dealing with him one day, if they just didn't feel like handling my rambunctious boy one morning when they came into work, I never knew about it. They have and always have greeted him with a smile on their faces and a willingness to do whatever it took to make things happen for him.
So, do I think my son is "mentally retarded"? Well, I have to say, first of all, that I really don't like that phrase, applied to anyone. What do you picture when you say the word "retarded"? Something slow and stupid and dumb, something not worth your time, something that is silly and needs to be made fun of. Isn't it a common practice to say, "This is so retarded" or "You're retarded". It's become a mild, playful insult or a semi-polite jab at our friends. So, no, I don't think Logan is "retarded". Do I think that he has a lot of information locked in his brain that he can't get out due to his deficiency in communication? Yes. Do I think that he finds creative ways to cope with things that may seem strange to other people? Yes. Do I think he avoids work at school and home because he does not see the value or reason behind learning how to write letters and numbers? Yes. Logan has always done everything on his own terms. Do I believe that one day, he will walk into the room and sit down and say, "Hello mother, how are you this fine afternoon?" Hell, no. But if he did, I would be cool with that.
I can hear (one) of my father-in-law's voices in my head right now: You have to take care of yourself. If you don't take care of yourself you can't take care of your kiddos. If you were in a plane and it was going down and the oxygen masks deployed, who would you put it on first? You would put it on you first, so that you would be awake and alert enough to be there for your kids.
I can't count the number of times he said this to me. When you're a mom, and you get busy, you think, yeah, yeah...I don't have time to eat, or take a nap, or whatever...and sometimes you don't. You get wrapped up in so many things and you forget about some stuff you always meant to do, and you decide that the leftover mac and cheese looks absolutely divine when you're running short on time for dinner. Pretty soon you feel really crummy, tired, and then the crankiness sets in. Or worse.
It's hard for people to understand what a family can go through when you have a special needs child. Normal parenting requires a lot of time and patience. It requires a lot of sacrifice and you learn how to deal with frustration and anger and disappointment. There are also moments when you realize the person receiving that award, or spiking that ball, or acing that test...hey, they are here because of you, and that person running around with your DNA is going to grow up to be somebody someday. Having a special needs child-autistic or otherwise...requires a little more. You give up a lot. You lose expectations of how your life was going to be. You gain a different perspective.
I won't go into all the boring details of the two days of testing we endured with Logan. Basically he was in a room with a diagnostician. We were disappointed to learn an intern would be testing our son and not the actual doctor we had spoken with. The room had different things in it...toys, books, blocks, etc. And she would ask Logan to do different things. Perform certain tasks. She would observe him playing. And here is what was concluded:
Severe autism, speech disorder, and mental retardation.
And here is where I sincerely and honestly believe we are still in the dark ages when it comes to autism. We don't know what causes it or why it happens. There are all kinds of theories. But there is one solid fact about autistic children that is true across the board: they thrive in structured environments. They are most secure when they know what to expect and when. They need thousands of times more reassurance than a normal, well-adjusted child. So you are going to take this child, who is prone to anxiety, aggression, temper tantrums, defiance, who cannot tell you if he is mad or sad or uncomfortable...and you are going to put him in an unfamiliar environment with an unfamiliar person that he has never met before and have him stay there half the day, and ask him to perform a variety of tasks that he does not normally perform on a day to day basis.
Lots of people think Einstein had some form of autism and it doesn't take an Einstein to figure out that the above scenario is a flaming bunch of B.S. I contend that if you want to really know what makes a child like this tick, then you need to observe the child, at home, in their normal routine; get to know the child, and spend more than eight to ten hours trying to reason out responses from a kid who probably doesn't want to be there in the first place.
Am I touchy because someone said my son was mentally retarded? Perhaps. Yes. No one ever wants to hear THAT about their own kid. I really like the way our diagnostician at the school put it: That their test showed that he was academically deficient, but that they did not believe that was true. Their belief was that there was a lot locked in that head of his, but that they had to go by what he chose to present to them. The GOOD thing about going to that particular doctor was that finally, finally we had an answer to the question: is our son autistic? And the answer was: Yes. So we knew what we were dealing with and we could go to the school and definitively say, this is what the deal is. Help us. And they have. Except for one unfortunate year when he had a teacher that was very ill-suited to working with him, he has had an exceptional time in our ISD. And it has always been because the classroom was super-organized, the schedule was planned...sometimes down to the minute, literally, and his teachers were unfailingly patient. If they dreaded dealing with him one day, if they just didn't feel like handling my rambunctious boy one morning when they came into work, I never knew about it. They have and always have greeted him with a smile on their faces and a willingness to do whatever it took to make things happen for him.
So, do I think my son is "mentally retarded"? Well, I have to say, first of all, that I really don't like that phrase, applied to anyone. What do you picture when you say the word "retarded"? Something slow and stupid and dumb, something not worth your time, something that is silly and needs to be made fun of. Isn't it a common practice to say, "This is so retarded" or "You're retarded". It's become a mild, playful insult or a semi-polite jab at our friends. So, no, I don't think Logan is "retarded". Do I think that he has a lot of information locked in his brain that he can't get out due to his deficiency in communication? Yes. Do I think that he finds creative ways to cope with things that may seem strange to other people? Yes. Do I think he avoids work at school and home because he does not see the value or reason behind learning how to write letters and numbers? Yes. Logan has always done everything on his own terms. Do I believe that one day, he will walk into the room and sit down and say, "Hello mother, how are you this fine afternoon?" Hell, no. But if he did, I would be cool with that.
Monday, May 23, 2011
Getting the Answer(s)
Logan had been at school almost three years. We were still searching for a final answer. By this time I was familiar with ARD meetings, parent/teacher conferences, how to diffuse a tantrum, what kind of things would overstimulate my child, and on and on. I was fairly certain by this point that Logan was indeed autistic. When you have a child with behavioral, emotional, and mental challenges, you read. A lot. You look for answers. You search the web. And you draw conclusions.
We were done with the Child Study Center. Our experience there, while providing us with a path to follow, had soured us on ever going there again. Now, allow me to say here that I'm sure there are many families and many children who have found what they were looking for when they walked through its doors. It just wasn't the right place for us.
We ended up finding a doctor through Cook Children Mental Health. The doctor there was much more approachable. She asked a lot of questions but it was more of a conversation than a verbal form we had to fill in. She asked us all about the challenges we faced with our son and decided that he would undergo two days of behavioral testing. They would ask him to do certain things or perform certain tasks, and draw conclusions from that.
This visit with this doctor was a real eye opener for me, and not just because of my son. She took a family medical history from us...wanted to know if anyone had a history of depression, or behavioral problems, etc. We were halfway through this somewhat awkward conversation when my husband looks at me and says, "What about your dad? Wasn't he kind of weird?"
I mean no disrespect to the dead. I loved my father. I still do. But weird is a good word for what he was.
He was brilliant. He was an electrical engineer who designed substations and did some of the designing for Comanche Peak Nuclear Power Plant. From the time I was very small I remember him sitting at his desk, drawing out a set of plans and every now and then, whooping at the Dallas Cowboys. He loved his work. And he loved the Cowboys.
But there were other things. He liked to drum on the furniture, or the steering wheel. I thought it was because he used to play the drums in high school, but it was a habit he never lost. He buried himself in the tv, computer, and the newspaper. He avoided personal, direct conversation at all costs. Put him in a social situation, ask him about himself or try to make small talk with him, and you would get three answers: "Well", "Huh", and "I don't know". He also mixed his words up on purpose: "Sleeping beauty" became "Beeping Sleuty", for example. He made funny clicking noises or ticking noises. Ask him about work and about what his latest project was and he came to life.
I related all this to the doctor and she laughed. "Well, sweetie, that's significant." And I suddenly realized...this father, who I loved, who inexplicably left our family right after I graduated high school and could never really explain to us why he wanted to go...this father who was so difficult to know and nail down...could it be that he just couldn't help it? Was he so challenged, socially and emotionally, because he had some form of autism or Asperger's that was never diagnosed? He was born in the late forties. Autism was unheard of then...so was Asperger's. A child with these challenges had a hard row to hoe back then. It's hard enough now. Realizing that the issues I had with my father, the frustration at never being able to be close to him, might not be my fault or his was an epiphany I did not expect to receive that day. Listening to that doctor and the questions she asked...suddenly all of my dad's behaviors made sense. I was searching for a way to help my son and I had found the answer to a question that had haunted me all of my life: Why? Why did my dad act the way he did? Why didn't he try to be closer to us? Why couldn't he hold a normal conversation? Why did he make those noises?
It felt like a huge burden had been lifted off my shoulders that day. I was there for Logan, but I found Dad. And I couldn't help but wish that he was there. I always felt, and still feel, that he would have understood Logan on a different level than the rest of us.
That being said, we still had two days of testing to go through with our little guy, and my husband was the lottery winner for that scenario. And I learned after that testing session that some of what doctors may tell you is true, and some of it is totally bogus. And it's up to you, as the mom or the dad or whatever you are to your child, in the end, to listen to your gut and not take everything people say about your kid as gospel truth.
We were done with the Child Study Center. Our experience there, while providing us with a path to follow, had soured us on ever going there again. Now, allow me to say here that I'm sure there are many families and many children who have found what they were looking for when they walked through its doors. It just wasn't the right place for us.
We ended up finding a doctor through Cook Children Mental Health. The doctor there was much more approachable. She asked a lot of questions but it was more of a conversation than a verbal form we had to fill in. She asked us all about the challenges we faced with our son and decided that he would undergo two days of behavioral testing. They would ask him to do certain things or perform certain tasks, and draw conclusions from that.
This visit with this doctor was a real eye opener for me, and not just because of my son. She took a family medical history from us...wanted to know if anyone had a history of depression, or behavioral problems, etc. We were halfway through this somewhat awkward conversation when my husband looks at me and says, "What about your dad? Wasn't he kind of weird?"
I mean no disrespect to the dead. I loved my father. I still do. But weird is a good word for what he was.
He was brilliant. He was an electrical engineer who designed substations and did some of the designing for Comanche Peak Nuclear Power Plant. From the time I was very small I remember him sitting at his desk, drawing out a set of plans and every now and then, whooping at the Dallas Cowboys. He loved his work. And he loved the Cowboys.
But there were other things. He liked to drum on the furniture, or the steering wheel. I thought it was because he used to play the drums in high school, but it was a habit he never lost. He buried himself in the tv, computer, and the newspaper. He avoided personal, direct conversation at all costs. Put him in a social situation, ask him about himself or try to make small talk with him, and you would get three answers: "Well", "Huh", and "I don't know". He also mixed his words up on purpose: "Sleeping beauty" became "Beeping Sleuty", for example. He made funny clicking noises or ticking noises. Ask him about work and about what his latest project was and he came to life.
I related all this to the doctor and she laughed. "Well, sweetie, that's significant." And I suddenly realized...this father, who I loved, who inexplicably left our family right after I graduated high school and could never really explain to us why he wanted to go...this father who was so difficult to know and nail down...could it be that he just couldn't help it? Was he so challenged, socially and emotionally, because he had some form of autism or Asperger's that was never diagnosed? He was born in the late forties. Autism was unheard of then...so was Asperger's. A child with these challenges had a hard row to hoe back then. It's hard enough now. Realizing that the issues I had with my father, the frustration at never being able to be close to him, might not be my fault or his was an epiphany I did not expect to receive that day. Listening to that doctor and the questions she asked...suddenly all of my dad's behaviors made sense. I was searching for a way to help my son and I had found the answer to a question that had haunted me all of my life: Why? Why did my dad act the way he did? Why didn't he try to be closer to us? Why couldn't he hold a normal conversation? Why did he make those noises?
It felt like a huge burden had been lifted off my shoulders that day. I was there for Logan, but I found Dad. And I couldn't help but wish that he was there. I always felt, and still feel, that he would have understood Logan on a different level than the rest of us.
That being said, we still had two days of testing to go through with our little guy, and my husband was the lottery winner for that scenario. And I learned after that testing session that some of what doctors may tell you is true, and some of it is totally bogus. And it's up to you, as the mom or the dad or whatever you are to your child, in the end, to listen to your gut and not take everything people say about your kid as gospel truth.
Sunday, May 22, 2011
Rocking On
Onward and upward.
Like I said...the experience with Dr. Haber did open doors for us. But I felt like we still weren't there yet. We met with the special ed department at our local ISD and they did an assessment of our son, determined he definitely had speech issues, and so he started going to school there half a day.
We were really blessed in that regard. He had a wonderful teacher who I am still in touch with today, and she had two paraprofessionals that were equally awesome. She was patient, she was kind, and she accepted Logan for who he was while still setting goals for him to meet. I saw a lot of progress with him while he was with her, and that semester (he actually started in November) with her turned into a whole extra school year. She was just the right person to teach Logan at that time, and I was, and still am grateful to her and the two assistants that worked with him
I have to also be honest and say that I needed him to go to school. I needed a break. His speech wasn't very developed yet at all, and he would become easily frustrated when he was overstimulated or when he wanted something and we couldn't understand what it was. Imagine that you have a headache or a toothache, or that you're craving a particular food, but you can't tell anyone, and there's no way for you to remedy it yourself. That's how it was for him, and for a lot of autistic children. So he would become frustrated and he would hit. He would hit me, he would hit his brother and sister, and he would try to harm himself. He would hit his head on the wall-on purpose, scratch himself, and hit himself. He would throw things. And he would do this several times a day. It was driving me crazy. I was frustrated and scared and in the beginning, when he would hit me, sometimes I would just burst out crying. I was exhausted. I didn't understand my son or why he was doing the things he was doing, and if he was hitting his own mother, then on some crazy level I thought I was failing. There were days when I thought my son was totally alienated from me and I just didn't know what to do. So I had to come up with ways to calm him down.
One of the biggest mistakes parents make with autistic children is yelling. We've all done it. It comes from the frustration and utter helplessness you feel sometimes. Sometimes it seemed like once I had one behavior under control with him, he would come up with a whole new and even more obnoxious one. It was impossible, almost, to take him to a store. There were too many people, too much noise, and too much to look at. He couldn't handle it, so he would yell in the store and try to climb out of the buggy. The stares I would get. I still get them when he has a bad day but now I just think, well. It's rude to stare. And this store appears to be full of rude people.
But, anyhow, you can't yell. Yelling alienates the kid and it's scary, and it jacks up their anxiety levels...a LOT. And yes, I'm preaching to myself as much as anyone else. I'm not perfect. We're all works in progress. But it reminds me of the time my husband went to Lowe's. We were thinking of putting an actual door in the kitchen entryway (having grown tired of our elaborate baby-gate system), and he patiently explained to the door guy at Lowe's what kind of door he wanted and why. The man listened for a minute and said, "Oh, that will never hold him. I have a ten year old autistic son, and I know." He went on to talk about his son for a moment, and revealed that he had just potty trained. At age ten. We were still working on it with Logan. And I can't tell you how relieved it made me feel to hear that another parent had similar issues...it was like a breath of fresh air. Yes, we go through this too. It's not just you. He also told us, "You can't yell at them. Once you yell, you've lost them." And it was true.
So, at all costs, remain calm. Famous last words. Keep calm and carry on. Keep calm and rock on. What fresh hell is this. Bloody hell, we're all buggered now. Whatever works for you, know what I'm saying?
So I had to find a way to calm him down, or someone was either going to go insane or get seriously injured. So I gave him a bath.
I mentioned his fascination with water. It's tempered a bit as he's gotten older, but then, he couldn't get enough of it. I would fill up the tub and he would stay in there until he resembled a shriveled little peach. He would float in there. And here's the thing. Anytime he wanted a bath, anytime I thought he needed to calm down, he got a bath. If it was five, ten times a day, we did it. And that's what you have to do. Every conventional rule you have, every preconception about parenting...forget all that, if you have an autistic child. Some of the rules just no longer apply. Some rules are made to be broken and some rules are nonsensical in the first place.
The other thing was Logan's clothes. He has a fixation on clothes...most of the time, they have to match, or be all the same color. At the same time he had his water fixation he also had a "camouflage" fixation. He loved to wear camouflage clothes, and so it seemed like we were recycling the same three outfits every day (we were). And woe unto me if those things weren't clean (or clean enough) for him to wear! A meltdown would ensue, a lot of arm-pulling and hitting and just plain put-outedness. It's not as much an issue now. He still has his favorite outfits and every now and then, he gets fixated on one. But his communication has improved enough that I can convince him (after repeating myself over and over and showing him the empty washer over and over) that that outfit is not clean, or that he actually grew out of it a year ago, and it's gone or not usable.
So now I have people who come to me and say, "Wow, Rachel, you are like, the most laid back person ever." And I think, Wow, I learned the hard way. I was forced to let go of so many things and so many little issues that some people have. And I don't miss being that way. I don't miss being that mom who had to have everything perfect or that mom who signs her children up for fifty things or that mom who aspires to homemaking of Martha Stewart-like proportions. I'm not Paula Deen and I'm not Candace Olsen. I'm not famous and I'm not rich...but I know who I am and what I love and the most important thing I will ever, ever do in this life is raise these three kids.
Like I said...the experience with Dr. Haber did open doors for us. But I felt like we still weren't there yet. We met with the special ed department at our local ISD and they did an assessment of our son, determined he definitely had speech issues, and so he started going to school there half a day.
We were really blessed in that regard. He had a wonderful teacher who I am still in touch with today, and she had two paraprofessionals that were equally awesome. She was patient, she was kind, and she accepted Logan for who he was while still setting goals for him to meet. I saw a lot of progress with him while he was with her, and that semester (he actually started in November) with her turned into a whole extra school year. She was just the right person to teach Logan at that time, and I was, and still am grateful to her and the two assistants that worked with him
I have to also be honest and say that I needed him to go to school. I needed a break. His speech wasn't very developed yet at all, and he would become easily frustrated when he was overstimulated or when he wanted something and we couldn't understand what it was. Imagine that you have a headache or a toothache, or that you're craving a particular food, but you can't tell anyone, and there's no way for you to remedy it yourself. That's how it was for him, and for a lot of autistic children. So he would become frustrated and he would hit. He would hit me, he would hit his brother and sister, and he would try to harm himself. He would hit his head on the wall-on purpose, scratch himself, and hit himself. He would throw things. And he would do this several times a day. It was driving me crazy. I was frustrated and scared and in the beginning, when he would hit me, sometimes I would just burst out crying. I was exhausted. I didn't understand my son or why he was doing the things he was doing, and if he was hitting his own mother, then on some crazy level I thought I was failing. There were days when I thought my son was totally alienated from me and I just didn't know what to do. So I had to come up with ways to calm him down.
One of the biggest mistakes parents make with autistic children is yelling. We've all done it. It comes from the frustration and utter helplessness you feel sometimes. Sometimes it seemed like once I had one behavior under control with him, he would come up with a whole new and even more obnoxious one. It was impossible, almost, to take him to a store. There were too many people, too much noise, and too much to look at. He couldn't handle it, so he would yell in the store and try to climb out of the buggy. The stares I would get. I still get them when he has a bad day but now I just think, well. It's rude to stare. And this store appears to be full of rude people.
But, anyhow, you can't yell. Yelling alienates the kid and it's scary, and it jacks up their anxiety levels...a LOT. And yes, I'm preaching to myself as much as anyone else. I'm not perfect. We're all works in progress. But it reminds me of the time my husband went to Lowe's. We were thinking of putting an actual door in the kitchen entryway (having grown tired of our elaborate baby-gate system), and he patiently explained to the door guy at Lowe's what kind of door he wanted and why. The man listened for a minute and said, "Oh, that will never hold him. I have a ten year old autistic son, and I know." He went on to talk about his son for a moment, and revealed that he had just potty trained. At age ten. We were still working on it with Logan. And I can't tell you how relieved it made me feel to hear that another parent had similar issues...it was like a breath of fresh air. Yes, we go through this too. It's not just you. He also told us, "You can't yell at them. Once you yell, you've lost them." And it was true.
So, at all costs, remain calm. Famous last words. Keep calm and carry on. Keep calm and rock on. What fresh hell is this. Bloody hell, we're all buggered now. Whatever works for you, know what I'm saying?
So I had to find a way to calm him down, or someone was either going to go insane or get seriously injured. So I gave him a bath.
I mentioned his fascination with water. It's tempered a bit as he's gotten older, but then, he couldn't get enough of it. I would fill up the tub and he would stay in there until he resembled a shriveled little peach. He would float in there. And here's the thing. Anytime he wanted a bath, anytime I thought he needed to calm down, he got a bath. If it was five, ten times a day, we did it. And that's what you have to do. Every conventional rule you have, every preconception about parenting...forget all that, if you have an autistic child. Some of the rules just no longer apply. Some rules are made to be broken and some rules are nonsensical in the first place.
The other thing was Logan's clothes. He has a fixation on clothes...most of the time, they have to match, or be all the same color. At the same time he had his water fixation he also had a "camouflage" fixation. He loved to wear camouflage clothes, and so it seemed like we were recycling the same three outfits every day (we were). And woe unto me if those things weren't clean (or clean enough) for him to wear! A meltdown would ensue, a lot of arm-pulling and hitting and just plain put-outedness. It's not as much an issue now. He still has his favorite outfits and every now and then, he gets fixated on one. But his communication has improved enough that I can convince him (after repeating myself over and over and showing him the empty washer over and over) that that outfit is not clean, or that he actually grew out of it a year ago, and it's gone or not usable.
So now I have people who come to me and say, "Wow, Rachel, you are like, the most laid back person ever." And I think, Wow, I learned the hard way. I was forced to let go of so many things and so many little issues that some people have. And I don't miss being that way. I don't miss being that mom who had to have everything perfect or that mom who signs her children up for fifty things or that mom who aspires to homemaking of Martha Stewart-like proportions. I'm not Paula Deen and I'm not Candace Olsen. I'm not famous and I'm not rich...but I know who I am and what I love and the most important thing I will ever, ever do in this life is raise these three kids.
Saturday, May 21, 2011
Pissin' In the Wind
Someone pointed out to me today: "You didn't write anything yesterday." "Yes I did." "No, you didn't." "I'm sure I did." But they were right and I didn't post anything yesterday. Sometimes, everything just kind of blends together. Know what I mean?
We do not have a magazine-perfect home. I laugh when I think of how I was when I got married. I had all kinds of ideas about the kind of house I wanted and what I wanted it to look like, and I was an HGTV addict. I loved hanging things on the walls and repainting rooms and finding just the right combination of things to display on a shelf. I loved nesting.
Well, our nest these days is a little tattered. There are a few pictures on the walls. (Those are the ones Logan hasn't knocked off yet). We did paint, one time. I don't want to do it again for a while. We put in tile and wood floors and once, in a fit of ambitious determination, I hand-plastered the kitchen walls and painted it a mossy green color. That's about it. The furniture has seen better days and so has my sense of style. And there was a time when a situation like this would just bother me, for days on end. I would stress about it. I would go to a friend's house who did not have children or whose children were older and come home and think, wow. I have a long way to go.
So here's the thing: I don't care anymore. I don't. All that stuff...the pretty furniture and the paint and the throw pillows and art prints, etc...I know there's a point in my life where I'll be able to have those things again. Right now, I do good to put the laundry away!
Some of you may be confused about why this is even an issue. Some autistic children...or just some children, they don't have to be autistic...can be hard on your house. A lot of autistic children fixate on things...cars, or computers, or washing machines. In Logan's case, he has two great loves: vacuum cleaners and water. Not together. Just those two things. He'll play with other things, like little action figures or flip through a picture book...but those two things are a very big deal in his world. I have lost count of the number of vacuums we have. Some of them are ones he created out of ordinary household objects. Others are from thrift stores or ones we just bought. It's a collection.
The water is a different issue. When he was three or four, he figured out how to climb on the kitchen counter. I would find him in there, sitting in the kitchen sink in his clothes, soaking wet, and spraying water everywhere with the sprayer. I could get him down from there, twenty, thirty, fifty times...it didn't matter. He would always go back to it. Eventually we bought two wooden-framed baby gates and blocked up the kitchen entrance. People would come over and bring their kids to play and be totally weirded out by our gated and barred kitchen. "Who's going to go in the kitchen?" "Why is that like that?" And even after I explained it to them, it was obvious that some of them didn't get it. I mean, I should just be able to tell Logan "no" and put him in time out or something, right? Ha.
He played with water in the bathroom, too, and we ended up with water damage in there and in the kitchen. He used to tantrum a lot when he was smaller and we do have holes in the walls from the time he shook the stationary bike so hard it damaged the dry wall. We have scars on the floor from furniture he dragged, or picked up and down and slammed against the wood. (Yes, he is that strong.)
So someone asked me the other day if I had finished remodeling my kitchen. At first I didn't know what she was talking about. Then I remembered that a long time ago, I had been gung-ho to transform it into this cute, cottage-y little nook that was a joy to work in. I laughed. I explained that it was mostly done but that I just didn't even have time to think about it anymore. My friend laughed too and said, "Sometimes you don't have enough time even to worry about things," or something like that. She was right.
So I try to concentrate on what's really important. I try to keep the CDC at bay by keeping the house presentable. I try to spend time with my kids and put some time into my real estate career. I spend time with my friends and I don't know what I'd do without them. I make time to spend with my husband. And I forgive myself.
Why do I need to forgive myself? What did I do? Well, I forgive myself if I don't get the laundry done. I forgive myself if I didn't get the bathroom clean. I forgive myself if we eat fast food for the third night in a row, or if I didn't call that person back, or if I notice a layer of dust on some shelf that hasn't seen the light of day. Because it doesn't matter. Logan matters. My other two children matter. My husband and the rest of my family matter. The rest will get done. I think the biggest mistake mothers make, and not just mothers of special-needs children but all moms, everywhere...the person we expect the most from is ourselves, and if we don't live up to the standard we set for ourselves, then no one punishes us more or gives a harder time than ourselves.
It's like the conversation I had with my friend Caroline one time:
Caroline: "Girl, what'd you do today?"
Me: "I was going to clean the house, but I just didn't want to."
Caroline: "Ain't no point worrying 'bout that....You're just pissin' in the wind, sometimes."
It is important to do those mundane things...clean the house, buy the groceries, fold the laundry...but it's even more important to stay sane. And that, dear friends, is a full-time job around here!
We do not have a magazine-perfect home. I laugh when I think of how I was when I got married. I had all kinds of ideas about the kind of house I wanted and what I wanted it to look like, and I was an HGTV addict. I loved hanging things on the walls and repainting rooms and finding just the right combination of things to display on a shelf. I loved nesting.
Well, our nest these days is a little tattered. There are a few pictures on the walls. (Those are the ones Logan hasn't knocked off yet). We did paint, one time. I don't want to do it again for a while. We put in tile and wood floors and once, in a fit of ambitious determination, I hand-plastered the kitchen walls and painted it a mossy green color. That's about it. The furniture has seen better days and so has my sense of style. And there was a time when a situation like this would just bother me, for days on end. I would stress about it. I would go to a friend's house who did not have children or whose children were older and come home and think, wow. I have a long way to go.
So here's the thing: I don't care anymore. I don't. All that stuff...the pretty furniture and the paint and the throw pillows and art prints, etc...I know there's a point in my life where I'll be able to have those things again. Right now, I do good to put the laundry away!
Some of you may be confused about why this is even an issue. Some autistic children...or just some children, they don't have to be autistic...can be hard on your house. A lot of autistic children fixate on things...cars, or computers, or washing machines. In Logan's case, he has two great loves: vacuum cleaners and water. Not together. Just those two things. He'll play with other things, like little action figures or flip through a picture book...but those two things are a very big deal in his world. I have lost count of the number of vacuums we have. Some of them are ones he created out of ordinary household objects. Others are from thrift stores or ones we just bought. It's a collection.
The water is a different issue. When he was three or four, he figured out how to climb on the kitchen counter. I would find him in there, sitting in the kitchen sink in his clothes, soaking wet, and spraying water everywhere with the sprayer. I could get him down from there, twenty, thirty, fifty times...it didn't matter. He would always go back to it. Eventually we bought two wooden-framed baby gates and blocked up the kitchen entrance. People would come over and bring their kids to play and be totally weirded out by our gated and barred kitchen. "Who's going to go in the kitchen?" "Why is that like that?" And even after I explained it to them, it was obvious that some of them didn't get it. I mean, I should just be able to tell Logan "no" and put him in time out or something, right? Ha.
He played with water in the bathroom, too, and we ended up with water damage in there and in the kitchen. He used to tantrum a lot when he was smaller and we do have holes in the walls from the time he shook the stationary bike so hard it damaged the dry wall. We have scars on the floor from furniture he dragged, or picked up and down and slammed against the wood. (Yes, he is that strong.)
So someone asked me the other day if I had finished remodeling my kitchen. At first I didn't know what she was talking about. Then I remembered that a long time ago, I had been gung-ho to transform it into this cute, cottage-y little nook that was a joy to work in. I laughed. I explained that it was mostly done but that I just didn't even have time to think about it anymore. My friend laughed too and said, "Sometimes you don't have enough time even to worry about things," or something like that. She was right.
So I try to concentrate on what's really important. I try to keep the CDC at bay by keeping the house presentable. I try to spend time with my kids and put some time into my real estate career. I spend time with my friends and I don't know what I'd do without them. I make time to spend with my husband. And I forgive myself.
Why do I need to forgive myself? What did I do? Well, I forgive myself if I don't get the laundry done. I forgive myself if I didn't get the bathroom clean. I forgive myself if we eat fast food for the third night in a row, or if I didn't call that person back, or if I notice a layer of dust on some shelf that hasn't seen the light of day. Because it doesn't matter. Logan matters. My other two children matter. My husband and the rest of my family matter. The rest will get done. I think the biggest mistake mothers make, and not just mothers of special-needs children but all moms, everywhere...the person we expect the most from is ourselves, and if we don't live up to the standard we set for ourselves, then no one punishes us more or gives a harder time than ourselves.
It's like the conversation I had with my friend Caroline one time:
Caroline: "Girl, what'd you do today?"
Me: "I was going to clean the house, but I just didn't want to."
Caroline: "Ain't no point worrying 'bout that....You're just pissin' in the wind, sometimes."
It is important to do those mundane things...clean the house, buy the groceries, fold the laundry...but it's even more important to stay sane. And that, dear friends, is a full-time job around here!
Thursday, May 19, 2011
We Were Supposed to be Impressed.
What do you do when you suspect your child has autism? Where do you go, who do you call, who do you tell (or not tell)? You know little if nothing about it. You did not plan for this. There is no rule book. There is no map. You have to make it up as you go along. It's your own first-person shooter, with the world creating itself while you move through this alien landscape, not knowing if you're going to fall through the earth with each step you take or get a 1-Up and tread with confidence.
The first and only place I could think of to take Logan to was the Child Study Center in Ft Worth. The Child Study Center treats all kinds of developmental and behavioral complications in children, so I thought it was a good place to start. My husband dislikes this place for reasons I will not go into, but he also knew we had to do something, so he was on board with it. I called. I was told to fill out an over-the-phone application. I did. I was told the wait would be a month or so.
I did not wait a month. I waited months. Meanwhile, Logan was losing progress with each passing day. I called them back. Twice. Was told that the person I was going to see was out on maternity leave and something had happened, blah blah blah, which translated to: You got lost in the system.
We finally got an appointment with Dr. Julian S. Haber. Very good with the little ones, we were told. Excellent doctor. I was excited and happy and yes, naive. This man would fix all our problems. Right?
The first wake-up call came when we walked into his office and saw a set of books, lying flat on his desk, precisely lined up so that the person opposite the desk could read the titles and authors. Make that author, singular. They were all by him.
We were supposed to be impressed. Instead we were amused...by this obvious need for admiration, by his attempts at impressing any set of parents who walked through his doors, and by his obvious concern that he be thought highly of by anyone he dealt with. I was not impressed. Our amusement quickly turned to irritation when we spent a lot of time answering a lot of questions while our son was spirited away into another room to do who knew what. The ultimate caveat came when he left to "examine" our son and returned a scant ten minutes later. He informed us that our son had the following: mixed language disorder, ad/hd, sensory integration dysfunction,and possible severe autism. He was also the one that ordered the MRI, the ABR, and the EEG. He scribbled his prognosis on a piece of scrap paper and sent us on our way. We later found out he was retiring in six months' time.
It may seem like our visit to this doctor was fruitless and a waste of time. I don't really see it that way. We had no idea what to expect and although we didn't expect a wonder drug or something like that, we were looking for some answers. What he gave us were possibilities: it could be this, it might be that. He also wrote in his final prognosis that "parents did not seek help from ECI". I took exception to that. ECI is early childhood intervention, a program that will help a child younger than three who is experiencing developmental delay. We didn't seek help from ECI because we didn't know about ECI or that it was available. By the time Logan got in to the Child Study Center, he was already three...too old for ECI. Just the right age to begin with the public school system special ed department.
What our visit to Dr. Haber did do for us was open another door. The tests he ordered ruled out a lot of things that could have been causing Logan's problems. His prognosis gave us something we could take to our public school and say, "Look, this is what's going on with our son, here is something from a doctor, what can you do?" The questions he asked were necessary, and it wouldn't be the only time we answered them. It was a beginning. It was a first step. For providing that, I am grateful to Dr. Haber. I must confess, however, I still have not read any of his books.
The first and only place I could think of to take Logan to was the Child Study Center in Ft Worth. The Child Study Center treats all kinds of developmental and behavioral complications in children, so I thought it was a good place to start. My husband dislikes this place for reasons I will not go into, but he also knew we had to do something, so he was on board with it. I called. I was told to fill out an over-the-phone application. I did. I was told the wait would be a month or so.
I did not wait a month. I waited months. Meanwhile, Logan was losing progress with each passing day. I called them back. Twice. Was told that the person I was going to see was out on maternity leave and something had happened, blah blah blah, which translated to: You got lost in the system.
We finally got an appointment with Dr. Julian S. Haber. Very good with the little ones, we were told. Excellent doctor. I was excited and happy and yes, naive. This man would fix all our problems. Right?
The first wake-up call came when we walked into his office and saw a set of books, lying flat on his desk, precisely lined up so that the person opposite the desk could read the titles and authors. Make that author, singular. They were all by him.
We were supposed to be impressed. Instead we were amused...by this obvious need for admiration, by his attempts at impressing any set of parents who walked through his doors, and by his obvious concern that he be thought highly of by anyone he dealt with. I was not impressed. Our amusement quickly turned to irritation when we spent a lot of time answering a lot of questions while our son was spirited away into another room to do who knew what. The ultimate caveat came when he left to "examine" our son and returned a scant ten minutes later. He informed us that our son had the following: mixed language disorder, ad/hd, sensory integration dysfunction,and possible severe autism. He was also the one that ordered the MRI, the ABR, and the EEG. He scribbled his prognosis on a piece of scrap paper and sent us on our way. We later found out he was retiring in six months' time.
It may seem like our visit to this doctor was fruitless and a waste of time. I don't really see it that way. We had no idea what to expect and although we didn't expect a wonder drug or something like that, we were looking for some answers. What he gave us were possibilities: it could be this, it might be that. He also wrote in his final prognosis that "parents did not seek help from ECI". I took exception to that. ECI is early childhood intervention, a program that will help a child younger than three who is experiencing developmental delay. We didn't seek help from ECI because we didn't know about ECI or that it was available. By the time Logan got in to the Child Study Center, he was already three...too old for ECI. Just the right age to begin with the public school system special ed department.
What our visit to Dr. Haber did do for us was open another door. The tests he ordered ruled out a lot of things that could have been causing Logan's problems. His prognosis gave us something we could take to our public school and say, "Look, this is what's going on with our son, here is something from a doctor, what can you do?" The questions he asked were necessary, and it wouldn't be the only time we answered them. It was a beginning. It was a first step. For providing that, I am grateful to Dr. Haber. I must confess, however, I still have not read any of his books.
Subscribe to:
Posts (Atom)