Last night I (Natalie) found the information that PBS in New Jersey was doing a documentary on Autism and I knew I needed to watch it. LeMira and I simultaneously watched it together. We IM'd back and forth the things we found interesting. There were a few things that I took away from it that I wanted to share. I am sure that LeMira might have a few more that she will want to share.
1. There was nothing I could have done to prevent it or detect it before birth.
2. I am not alone in this. There are so many other parents out there struggling with the same things.
3. Research is being done in order to give me more answers.
4. I am already doing the best thing that can be done, being an advocate for my children.
So if you have an hour free, please watch this video. We aren't anywhere close to understanding Autism but with more and more information and Research it is only a matter of time!
Decoding Autism
Tuesday, September 28, 2010
Sunday, September 26, 2010
The Results Are In
On Thursday, as I (LeMira) drove home from the appointment with the psychologist, I had many thoughts. Above all, this thought pelted me: Why did I go? Here are the answers I gathered.
1. We have a diagnosis and an explanation. Yes, my child has PDD-NOS (Pervasive Development Disorder-Not Otherwise Specified). It turns out that my son's delays are NOT due to prematurity. In fact, I was told to throw that excuse out. It has NOTHING to do with my son's issue. PDD-NOS is, in fact, hereditary. J.R. would have had it even if he hadn't been premature. I can even tell you that it comes from my husband's line.
2. I was validated. All of the little tactics and ideas I've had that have popped into my head to try were right. Everything I've been doing to try to help my child are just what he's needed. I'm not too involved in my child's life; I'm not a bad mom. My instincts were right, and I was not grasping at straws. To be honest, when I was telling the doctor why I felt my child needed to be tested, he looked at me without expression. (I swear psychologists must have to be able to do that in order to get their degrees.) His expression encouraged me to grasp at everything and anything that I saw in my child that seemed quirky or odd. In the end, he told me that all of my concerns were exactly what PDD-NOS is.
3. I have some strategies that I can use. I can't remember them all, and that's why the psychologist will be writing up a report with recommendations on it of what we can do.
4. I have confidence in my abilities as a mother and knowing my child. Yes, there are days that I feel completely inadequate to be my child's mother, but I now feel some power and confidence in being my child's best advocate.
I can not tell you the relief I felt when the doctor officially gave the diagnosis. I physically felt a burden lift off my shoulders. This is something I can accept, something I can work with. I have answers and now I have a definite direction.
1. We have a diagnosis and an explanation. Yes, my child has PDD-NOS (Pervasive Development Disorder-Not Otherwise Specified). It turns out that my son's delays are NOT due to prematurity. In fact, I was told to throw that excuse out. It has NOTHING to do with my son's issue. PDD-NOS is, in fact, hereditary. J.R. would have had it even if he hadn't been premature. I can even tell you that it comes from my husband's line.
2. I was validated. All of the little tactics and ideas I've had that have popped into my head to try were right. Everything I've been doing to try to help my child are just what he's needed. I'm not too involved in my child's life; I'm not a bad mom. My instincts were right, and I was not grasping at straws. To be honest, when I was telling the doctor why I felt my child needed to be tested, he looked at me without expression. (I swear psychologists must have to be able to do that in order to get their degrees.) His expression encouraged me to grasp at everything and anything that I saw in my child that seemed quirky or odd. In the end, he told me that all of my concerns were exactly what PDD-NOS is.
3. I have some strategies that I can use. I can't remember them all, and that's why the psychologist will be writing up a report with recommendations on it of what we can do.
4. I have confidence in my abilities as a mother and knowing my child. Yes, there are days that I feel completely inadequate to be my child's mother, but I now feel some power and confidence in being my child's best advocate.
I can not tell you the relief I felt when the doctor officially gave the diagnosis. I physically felt a burden lift off my shoulders. This is something I can accept, something I can work with. I have answers and now I have a definite direction.
Thursday, September 23, 2010
Today's Fear
Today's the day. Today my little guy sees the child psychologist for his multi-disciplinary assessment. Basically, J.R. is being tested for anything and everything (ADD, ADHD, Autism, etc.). I admit, I'm nervous, scared, anxious, and worried. What if the doctor doesn't see what I'm seeing? What if I forget to tell him something? What if the tests come back negative?
Okay, so I'm sure it's not going to be black or white/positive or negative, I mean, we're seeing a psychologist; but what if there aren't any "abnormalities" other than just the tentative diagnosis* (Cerebral Palsy) the neurologist gave us a month ago? A million questions are running circles in my head, and you can imagine that for someone who gets motion sickness like me, that it's quite sickening. Here are just a few that keep making laps around my brain:
If J.R.'s behaviors are normal, does that mean I'm just too impatient with him?
Is it just my fault?
Will he not get the help he needs in school?
Is there nothing I can do?
Sure, some of these sound selfish, but I don't mean them to be. I'm really worried that what I'm doing as a parent is HURTING my child, enabling him to continue these poor behaviors. Seriously, my biggest fear today is not that J.R. will throw a fit, get angry, or do nothing; my biggest fear is that the doctor will tell me that it was a waste of time and that there is nothing we can do to help my child.
*It's a tentative diagnosis because it will only be definite if we decide to give J.R. an MRI to determine if there's brain damage. We're still deciding what to do with that one.
Okay, so I'm sure it's not going to be black or white/positive or negative, I mean, we're seeing a psychologist; but what if there aren't any "abnormalities" other than just the tentative diagnosis* (Cerebral Palsy) the neurologist gave us a month ago? A million questions are running circles in my head, and you can imagine that for someone who gets motion sickness like me, that it's quite sickening. Here are just a few that keep making laps around my brain:
If J.R.'s behaviors are normal, does that mean I'm just too impatient with him?
Is it just my fault?
Will he not get the help he needs in school?
Is there nothing I can do?
Sure, some of these sound selfish, but I don't mean them to be. I'm really worried that what I'm doing as a parent is HURTING my child, enabling him to continue these poor behaviors. Seriously, my biggest fear today is not that J.R. will throw a fit, get angry, or do nothing; my biggest fear is that the doctor will tell me that it was a waste of time and that there is nothing we can do to help my child.
*It's a tentative diagnosis because it will only be definite if we decide to give J.R. an MRI to determine if there's brain damage. We're still deciding what to do with that one.
Monday, September 6, 2010
Discipline
So I have two dilemma's here. Both have nothing to do with having a special needs child, except that maybe I am confronted with these situations on a more regular basis than other mothers. First, how do you stay motivated to discipline your child when you feel like you are really punishing yourself?
I have been given so much advice, as I am sure most mothers are, on the "how tos" and "what withs" of discipline. But rarely have I been given advice on how to survive said "how tos" and "what withs". "Take away his favorite toy", "Take away the Tv, video games, bicycle, ......", "Put him in time out, on his bed, in his room.....". Unfortunately all I hear is "Take away something that will keep him occupied", "Take away your peaceful productive time", "Stand behind him in time out, by his bed, outside of his room". Now I admit no one ever said disciplining is easy, but what if your child doesn't learn after three or four times. What if this becomes your whole day, week, life? I am sounding mellow dramatic I admit. But after yesterday and realizing that I am spending most of my life saying "Don't, Stop, Come back here, Don't smile at me when I am punishing you, Go to your Room, Put your nose on the wall,......", I can't help but think I must either, A. be doing something wrong, or B. I just haven't got something right. Advice is always welcome! (This doesn't even delve into all of the reward systems that we have set up and then watched fail miserably!)
My second Dilemma has to do with my youngest child. How do you discipline a child who thinks it's all a game? Micah is so incredibly different than Isaac which, from what I can tell is exactly how it is supposed to be. Who knew two kids with the exact same diagnosis, same parents, and same fondness for trains, could be so different to discipline. I remember my father talking about how it was night and day disciplining my sister and me. I thought "well of course, I was obviously better!" The easy answer to that is no, I just had easier motivators/reinforcements than my sister did.
Micah is a breed of his own. Trying to figure out what is going to motivate him enough each day is like solving the Sunday paper's crossword puzzle. Half the time he laughs at me when I try to sternly reprimand him. Which leads me to get more angry (who wants to be laughed at while you are trying to impart right and wrong?) It all devolves to one big crying, spanking mess very quickly. Can you figure out which one of us cries first?
I think this is a common mom thing. You don't have to have any specific type of child to feel the pressures of teaching your child right from wrong. But when you spend most of the day trying not to throw a bigger tantrum than your child, disciplining with love and logic seems like something that might be possible on Mars. So, great and wonderfully wise mothers out there..... How do you do it? What are your tricks? What keeps you sane and can you sell it to me?
Thursday, August 26, 2010
Social Skills
Some people are born with an innate sense of social awareness. I have always thought of myself as a people person. I tend to get along with most people and generally like most people. Social situations don't usually scare me, I just go with the flow. So when your child, who shares your genetic make up, has trouble in social situations, it is sometimes hard to understand how they could just not get it.
Most of us are born with the ability to adapt to social situations naturally. For instance, A little boy (Bobby) wants to play with another little boy's (Johnny) toy. The first time, Bobby goes up and takes the toy. Johnny then shoves Bobby and takes the toy back. "Hmm", Bobby thinks, "that didn't work". So he adapts and tries something different. He may not get it right the second or maybe even the third time, but he finally figures out that if he asks or waits his turn then (usually) he will get what he wanted: the toy to play with. This is a social script.
Children with Autism Spectrum Disorder (ASD) have trouble with these social scripts. Since every child is different, the breakdown comes in multiple different places. For my child, it is the deviation from his plan. He thinks he has a solid plan, so why isn't it working? He tries it again and again. His results are always the same, but he still doesn't change his actions unless there is extreme intervention by teaching him the correct social scripts that will give him his desired result. Is this making sense? So something that another child figures out with trial and error, my child needs direct supervision and extreme support to learn. He gets it eventually, and he excels at that specific situation once he figures it out. But, oh dear, here is another situation that is a little different, and we are back to the same sequence all over again. He won't be able to carry over what he learned from the last situation, or if he does, it won't be appropriate to the new situation.
So if we use the same example, Isaac sees a little boy playing with a toy. He wants to play with the toy, but this time he also wants to play with the boy. So he goes to the boy and asks to play with the toy. The boy either says "no" or says "sure" and then walks away. Well, now Isaac is frustrated because he didn't really get what he wanted. So, I have to specifically say, "Did you ask to play WITH the boy?" He couldn't adapt to the change in the situation.
The interesting thing about this process is that every parent goes through this. We have to teach our children these social skills. The unique thing about children with ASD is that Parents have to continue to do this for a much longer period and repetitively. Something a three and four year old should be learning to master, my son still struggles with at six.You could maybe see how this could become tiring for me, teachers, and for Isaac.
As a parent you hope that as you raise your children, that others will understand that it is a learning process for the child and for you as well. I went to the playground for a play date with one of Isaac's classmates from his PDD classroom, and unfortunately, the little girl had a classic "Autism" meltdown. (If you have not seen one of these count yourself lucky, they are intense.) The little girl wanted to swing on a specific swing, and another child was currently using it. She could not change her plan to swing on another unoccupied swing or wait patiently till the other child was off. So she began kicking wood chips at the other child, stomping, screaming, and then eventually hitting her mother when she tried to intervene. She could not be reasoned with, and the tantrum escalated. If you have tried to wrestle an out-of-control six year old you will know how hard it was for this mother.
This sweet mother was, of course, horrified and embarrassed, and it was really interesting for me to watch this as a bystander. Usually I am the mother taking a screaming and kicking child to the car as quickly as possible. The interesting thing was to see how the people around us reacted to such an abnormal meltdown. Most mothers looked on with sympathy and tried to ignore it so this mother wouldn't be embarrassed, but a few looked on horrified or disgustedly. At first I had a desire to say something to these few about how they had no right to judge, but then I thought it's too bad for them that they will never know this sweet mother who is so strong in her fight for her child.
I have become a better person from getting to know other mothers who struggle with their children whether they have special needs or not. Thank you to all of you who have supported and sometimes held me up when I thought I couldn't do it anymore. That, to me, is a social skill that only wisdom and experience can give a person. I hope someday I will have both, and use them to help others.
On a side note, today at the playground Isaac went to someone and asked him what his name was, how old he was, and generally went about the introduction ritual without a flaw! You should have seen my puffed chest and proud face. We've come a long way baby!
Most of us are born with the ability to adapt to social situations naturally. For instance, A little boy (Bobby) wants to play with another little boy's (Johnny) toy. The first time, Bobby goes up and takes the toy. Johnny then shoves Bobby and takes the toy back. "Hmm", Bobby thinks, "that didn't work". So he adapts and tries something different. He may not get it right the second or maybe even the third time, but he finally figures out that if he asks or waits his turn then (usually) he will get what he wanted: the toy to play with. This is a social script.
Children with Autism Spectrum Disorder (ASD) have trouble with these social scripts. Since every child is different, the breakdown comes in multiple different places. For my child, it is the deviation from his plan. He thinks he has a solid plan, so why isn't it working? He tries it again and again. His results are always the same, but he still doesn't change his actions unless there is extreme intervention by teaching him the correct social scripts that will give him his desired result. Is this making sense? So something that another child figures out with trial and error, my child needs direct supervision and extreme support to learn. He gets it eventually, and he excels at that specific situation once he figures it out. But, oh dear, here is another situation that is a little different, and we are back to the same sequence all over again. He won't be able to carry over what he learned from the last situation, or if he does, it won't be appropriate to the new situation.
So if we use the same example, Isaac sees a little boy playing with a toy. He wants to play with the toy, but this time he also wants to play with the boy. So he goes to the boy and asks to play with the toy. The boy either says "no" or says "sure" and then walks away. Well, now Isaac is frustrated because he didn't really get what he wanted. So, I have to specifically say, "Did you ask to play WITH the boy?" He couldn't adapt to the change in the situation.
The interesting thing about this process is that every parent goes through this. We have to teach our children these social skills. The unique thing about children with ASD is that Parents have to continue to do this for a much longer period and repetitively. Something a three and four year old should be learning to master, my son still struggles with at six.You could maybe see how this could become tiring for me, teachers, and for Isaac.
As a parent you hope that as you raise your children, that others will understand that it is a learning process for the child and for you as well. I went to the playground for a play date with one of Isaac's classmates from his PDD classroom, and unfortunately, the little girl had a classic "Autism" meltdown. (If you have not seen one of these count yourself lucky, they are intense.) The little girl wanted to swing on a specific swing, and another child was currently using it. She could not change her plan to swing on another unoccupied swing or wait patiently till the other child was off. So she began kicking wood chips at the other child, stomping, screaming, and then eventually hitting her mother when she tried to intervene. She could not be reasoned with, and the tantrum escalated. If you have tried to wrestle an out-of-control six year old you will know how hard it was for this mother.
This sweet mother was, of course, horrified and embarrassed, and it was really interesting for me to watch this as a bystander. Usually I am the mother taking a screaming and kicking child to the car as quickly as possible. The interesting thing was to see how the people around us reacted to such an abnormal meltdown. Most mothers looked on with sympathy and tried to ignore it so this mother wouldn't be embarrassed, but a few looked on horrified or disgustedly. At first I had a desire to say something to these few about how they had no right to judge, but then I thought it's too bad for them that they will never know this sweet mother who is so strong in her fight for her child.
I have become a better person from getting to know other mothers who struggle with their children whether they have special needs or not. Thank you to all of you who have supported and sometimes held me up when I thought I couldn't do it anymore. That, to me, is a social skill that only wisdom and experience can give a person. I hope someday I will have both, and use them to help others.
On a side note, today at the playground Isaac went to someone and asked him what his name was, how old he was, and generally went about the introduction ritual without a flaw! You should have seen my puffed chest and proud face. We've come a long way baby!
Friday, August 20, 2010
Professionals' Opinions
I found some great videos (on an adoption support site of all places) from a conference that was held last year with a panel of professionals who speak on autism (and mention very little ADHD/ADD). They were beneficial and educational to me as a parent. Maybe they will help you.
http://www.youtube.com/watch?v=-wbS5e9P81M
http://www.youtube.com/user/VistaDelMarCares#p/u/3/opxpnu8t3OQ
http://www.youtube.com/user/VistaDelMarCares#p/u/4/TuQqvSgznyA
My favorite quote: "Once you've seen one child with autism, you've seen one child with autism." ~ A parent of a child with autism
http://www.youtube.com/watch?v=-wbS5e9P81M
http://www.youtube.com/user/VistaDelMarCares#p/u/3/opxpnu8t3OQ
http://www.youtube.com/user/VistaDelMarCares#p/u/4/TuQqvSgznyA
My favorite quote: "Once you've seen one child with autism, you've seen one child with autism." ~ A parent of a child with autism
Thursday, August 19, 2010
School is Almost in Session
Last spring, as the end of school approached, I started to dread the summer. For a while, I counted down the days until school. Until today, I thought I was the only one in my household doing that.
The first week of July, I noticed that Jackson started getting very clingy. He watched everywhere I went, asked at least three times if I was going to "wait right there," and panicked if I left the room. This past Sunday as we were getting ready to go to church, he said to me, "Mom, you can't leave Primary [the children's class]." I worried and worried about him. Separation Anxiety at six years old? What was going on?
Yesterday I took him to his new school to meet his teacher. As we climbed into the car, in a timid voice, Jackson stated, "Mom we have 1-2-3-4-5-6-7-8-9-10-11 days until school. I don't want to go to school." It hit me then. How could I have missed this? How could I think my child, the one who remembers dates like I remember how many cookies are left, had forgotten about school? His anxiety about the new school year has been going on since the last day of school in May. He has been worried all summer long.
Suddenly, I'm panicking inside, too. Last year Jackson attended Transitional Kindergarten (also known as Special Kindergarten) - basically Kindergarten at a slower pace. He excelled there. This year I chose to keep him in Kindergarten because of his social skills - or lack thereof. I debated and debated about where to send him to school, and I finally decided on a local charter school. Fewer students=smaller class sizes, right? I found out there are 30 students registered in his Kindergarten class. 30, really? In a Kindergarten class? Yeah, Panic Attack. The school is trying to recruit more students to hire another teacher or encourage some to go to the 3-day class. Jackson needs and is ready for the 5 day/all day Kindergarten.
Over the last few days, I've been fretting and fretting about how he will handle school. Will he be so lost that he hates it everyday? Will he be brave enough to ask what he doesn't know? Will he use the bathroom or have accidents (he has an irrational fear of new toilets)? How many tears will he cry? Will he learn to make friends, or will they shun him? What will he do without me?
There, I said it. I think he needs me. I can't let go. I want to let go, but can't. How do I do this? Jackson needs advanced warning. School registration was chaotic with parents and kids noisily chatting in small, crowded spaces; and so he didn't get a clear idea of the school. I have a few ideas.
The first week of July, I noticed that Jackson started getting very clingy. He watched everywhere I went, asked at least three times if I was going to "wait right there," and panicked if I left the room. This past Sunday as we were getting ready to go to church, he said to me, "Mom, you can't leave Primary [the children's class]." I worried and worried about him. Separation Anxiety at six years old? What was going on?
Yesterday I took him to his new school to meet his teacher. As we climbed into the car, in a timid voice, Jackson stated, "Mom we have 1-2-3-4-5-6-7-8-9-10-11 days until school. I don't want to go to school." It hit me then. How could I have missed this? How could I think my child, the one who remembers dates like I remember how many cookies are left, had forgotten about school? His anxiety about the new school year has been going on since the last day of school in May. He has been worried all summer long.
Suddenly, I'm panicking inside, too. Last year Jackson attended Transitional Kindergarten (also known as Special Kindergarten) - basically Kindergarten at a slower pace. He excelled there. This year I chose to keep him in Kindergarten because of his social skills - or lack thereof. I debated and debated about where to send him to school, and I finally decided on a local charter school. Fewer students=smaller class sizes, right? I found out there are 30 students registered in his Kindergarten class. 30, really? In a Kindergarten class? Yeah, Panic Attack. The school is trying to recruit more students to hire another teacher or encourage some to go to the 3-day class. Jackson needs and is ready for the 5 day/all day Kindergarten.
Over the last few days, I've been fretting and fretting about how he will handle school. Will he be so lost that he hates it everyday? Will he be brave enough to ask what he doesn't know? Will he use the bathroom or have accidents (he has an irrational fear of new toilets)? How many tears will he cry? Will he learn to make friends, or will they shun him? What will he do without me?
There, I said it. I think he needs me. I can't let go. I want to let go, but can't. How do I do this? Jackson needs advanced warning. School registration was chaotic with parents and kids noisily chatting in small, crowded spaces; and so he didn't get a clear idea of the school. I have a few ideas.
- I'm going to call the school next week after it's started for the other grades and ask to take him around the school to see everything.
- Go to the bathroom and flush the toilet; let him practice going by himself.
- Teach him what he needs to do if he has to go to the bathroom, get a drink, etc.
- Remind him to take deep breaths when he's frustrated and perhaps teach him to squeeze the table or his feet if he is frustrated (usually he squeezes my hand hard to get the deep sensory stimulation that he needs).
- Tell him that I love him and that he will be okay, and that it will be fun!
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