If your child has special needs, you have landed in foreign territory. What you need to know is, despite its sun-shiny cheeriness, despite the perfect bulletin boards and the smiley face posters, and despite the multitude of activities organized by a PTA, school is going to be somewhat hostile territory for you and your child. I do not say this to scare or even to criticize. It is what it is. It does not mean people will be mean to you or your child. It does not mean you have to be fearful. What it means is, as a parent, you MUST be your child's advocate. No one else has YOUR child's best interest at heart. The law pretends to. A law comes to life only in the hands of those who follow it. Public districts have mountains of laws, especially in the field of children who struggle, under which they must not suffocate. Bottom line: districts will set things up to do the minimum of what the law requires. However, what every parent of children with special needs should know is that the law requires that they do EVERYTHING they can do for your child. Here are a few sites that are helpful for parents to know their rights under the law. 
Thursday, April 5, 2012
Autism Awareness Tidbit #5
As parents, we have all dreamed our dreams of what our child's lives will be. Most of us think back to our own childhood and life in school and presume that our child's life will follow in a similar fashion. If you have a neurotypical child, that will probably be the case, with the exception of the explosion of technology that somewhat alters his/her experiences from our own.
If your child has special needs, you have landed in foreign territory. What you need to know is, despite its sun-shiny cheeriness, despite the perfect bulletin boards and the smiley face posters, and despite the multitude of activities organized by a PTA, school is going to be somewhat hostile territory for you and your child. I do not say this to scare or even to criticize. It is what it is. It does not mean people will be mean to you or your child. It does not mean you have to be fearful. What it means is, as a parent, you MUST be your child's advocate. No one else has YOUR child's best interest at heart. The law pretends to. A law comes to life only in the hands of those who follow it. Public districts have mountains of laws, especially in the field of children who struggle, under which they must not suffocate. Bottom line: districts will set things up to do the minimum of what the law requires. However, what every parent of children with special needs should know is that the law requires that they do EVERYTHING they can do for your child. Here are a few sites that are helpful for parents to know their rights under the law.
If your child has special needs, you have landed in foreign territory. What you need to know is, despite its sun-shiny cheeriness, despite the perfect bulletin boards and the smiley face posters, and despite the multitude of activities organized by a PTA, school is going to be somewhat hostile territory for you and your child. I do not say this to scare or even to criticize. It is what it is. It does not mean people will be mean to you or your child. It does not mean you have to be fearful. What it means is, as a parent, you MUST be your child's advocate. No one else has YOUR child's best interest at heart. The law pretends to. A law comes to life only in the hands of those who follow it. Public districts have mountains of laws, especially in the field of children who struggle, under which they must not suffocate. Bottom line: districts will set things up to do the minimum of what the law requires. However, what every parent of children with special needs should know is that the law requires that they do EVERYTHING they can do for your child. Here are a few sites that are helpful for parents to know their rights under the law. 
Wednesday, April 4, 2012
Autism Awareness Tidbit #4
Today's tidbit: Every child with ASD is completely unique. There are many similarities with the condition across its spectrum. With each unique child come unique parental responses. Two examples come to mind: TV shows and support groups.
Well-meaning folk will tell you every show they watched that had anything to to with autism. I know some people who LOVE the series Parenthood. I watched the first season. Beautifully and realistically written. In order to emotionally survive, however, I could not invest in it. Other parents of children with ASD love the show. The show hits different people different ways. When you HAVE a son named Max and you get him diagnosed...when you have to admit to friends and family that there's something wrong with your kid...watching the reenactment of that is not always a good time. I am grateful that the show is getting a perspective across that is not always known to the general public. It also took me some time to warm up to The Big Bang Theory. At least that is a comedy. We watch Sheldon, and we find in that actor comedic genius. Not everyone sees their own son. I joke that I live with Sheldon. So many levels of that are not a joke. Sheldon demonstrates the caricature of Asperger's. It took me a bit to warm up the fact that America was getting a good laugh out of it.
Parent responses to support groups are another thing that is as unique as the child itself. I was thrilled that there were support groups in my community. My local society is fantastic and very active. I am just at a point in my life where I feel like I am wading in the waters... I don't want to talk about being happy as I drown, or lucky to be in such nice cool water. Because I am not one bit happy about autism. I love my children, but I do not love this disease. I get to watch as other children without it merge into social situations without a problem. I get to hear about people who never have to think 10 steps ahead to prepare their children for life's unexpected stuff. Yeah, I know. There are other things that could be worse. Yup, I got it. But I still get to say that I am not OK with my kids being on the spectrum, and I don't necessarily want to sit and talk about it or be reminded of it more than I must. My attitude shocks me as much as anyone. I figured out not too long ago that everyone must choose their survival path. We all have the same 24 hours to live...we all have to accept a certain mindset in order to do it. I don't have to embrace things as other parents of children with ASD do.
Well-meaning folk will tell you every show they watched that had anything to to with autism. I know some people who LOVE the series Parenthood. I watched the first season. Beautifully and realistically written. In order to emotionally survive, however, I could not invest in it. Other parents of children with ASD love the show. The show hits different people different ways. When you HAVE a son named Max and you get him diagnosed...when you have to admit to friends and family that there's something wrong with your kid...watching the reenactment of that is not always a good time. I am grateful that the show is getting a perspective across that is not always known to the general public. It also took me some time to warm up to The Big Bang Theory. At least that is a comedy. We watch Sheldon, and we find in that actor comedic genius. Not everyone sees their own son. I joke that I live with Sheldon. So many levels of that are not a joke. Sheldon demonstrates the caricature of Asperger's. It took me a bit to warm up the fact that America was getting a good laugh out of it.Parent responses to support groups are another thing that is as unique as the child itself. I was thrilled that there were support groups in my community. My local society is fantastic and very active. I am just at a point in my life where I feel like I am wading in the waters... I don't want to talk about being happy as I drown, or lucky to be in such nice cool water. Because I am not one bit happy about autism. I love my children, but I do not love this disease. I get to watch as other children without it merge into social situations without a problem. I get to hear about people who never have to think 10 steps ahead to prepare their children for life's unexpected stuff. Yeah, I know. There are other things that could be worse. Yup, I got it. But I still get to say that I am not OK with my kids being on the spectrum, and I don't necessarily want to sit and talk about it or be reminded of it more than I must. My attitude shocks me as much as anyone. I figured out not too long ago that everyone must choose their survival path. We all have the same 24 hours to live...we all have to accept a certain mindset in order to do it. I don't have to embrace things as other parents of children with ASD do.
Tuesday, April 3, 2012
Autism Awareness Tidbit #3
How do you know? All this talk about autism spectrum disorders. How do you know if a child should go through the steps for diagnosis?
As mentioned yesterday, our son missed a major developmental milestone--putting words together to make meaning and assigning words to objects. We honestly did not notice right away. It was when I picked him up from day care and his peers were saying, "Max's mommy," and pointing at me that I realized we were at least dealing with a speech/language delay. At that point, autism had not entered my thoughts. Sparing you our own story for now, I will say that bits and pieces came together. Our major awakening came via the video glossary we found on the Autism Speaks website that compare typical and atypical behaviors at certain developmental markers. There are also many lists of behaviors that give an initial idea of whether or not to pursue further data gathering. I avoid saying to "pursue a diagnosis," because, honestly, hearing , "Yes, I am seeing that he is on the spectrum," is similar to hitting a brick wall at 70 mph. It's not what you want to hear, and you want someone to say, "Will you just chill out? Your kid's going to be fine. You are over worrying."
This site is extensive in discussing symptoms of ASD and the road to diagnosis. There are countless others as well. If you are really considering an evaluation, your local Easter Seals is also an excellent place to start. Do NOT rely on your pediatrician. Rely on your GUT as your child's parent. Our pediatrician has sinced apologized for missing the diagnosis. We, as his parents, pushed for a developmental pediatrician screening which led to the diagnosis. For our son with Asperger's, we were told that kids who are "that smart" just sometimes are that way (having debilitating panic attacks, claiming to hear voices) because they understand things above their biological level and don't know what to do with it. Our first son grew up in a school system and medical community that truly did not know to suggest Asperger's, and was in no way ready to assist a person with that disability. But that's a tidbit for a whole other day!
As mentioned yesterday, our son missed a major developmental milestone--putting words together to make meaning and assigning words to objects. We honestly did not notice right away. It was when I picked him up from day care and his peers were saying, "Max's mommy," and pointing at me that I realized we were at least dealing with a speech/language delay. At that point, autism had not entered my thoughts. Sparing you our own story for now, I will say that bits and pieces came together. Our major awakening came via the video glossary we found on the Autism Speaks website that compare typical and atypical behaviors at certain developmental markers. There are also many lists of behaviors that give an initial idea of whether or not to pursue further data gathering. I avoid saying to "pursue a diagnosis," because, honestly, hearing , "Yes, I am seeing that he is on the spectrum," is similar to hitting a brick wall at 70 mph. It's not what you want to hear, and you want someone to say, "Will you just chill out? Your kid's going to be fine. You are over worrying." This site is extensive in discussing symptoms of ASD and the road to diagnosis. There are countless others as well. If you are really considering an evaluation, your local Easter Seals is also an excellent place to start. Do NOT rely on your pediatrician. Rely on your GUT as your child's parent. Our pediatrician has sinced apologized for missing the diagnosis. We, as his parents, pushed for a developmental pediatrician screening which led to the diagnosis. For our son with Asperger's, we were told that kids who are "that smart" just sometimes are that way (having debilitating panic attacks, claiming to hear voices) because they understand things above their biological level and don't know what to do with it. Our first son grew up in a school system and medical community that truly did not know to suggest Asperger's, and was in no way ready to assist a person with that disability. But that's a tidbit for a whole other day!
Monday, April 2, 2012
Autism Awareness Tidbit #2
The Center for Disease Control and Prevention (CDC) continually studies increases in incidences of certain conditions. Recently, the CDC came out with the following statistic based on their recent research: 1 in 88 children (1 in 54 boys and 1 in 252 girls) has been diagnosed with some form of ASD. More specifics, along with the study, can be found on this site.
Some meaningful persons have likened this increase to that of ADD/ADHD. Granted, the ADD/ADHD diagnosis has exploded during the last two decades. There are critical differences in the procedures for the diagnosis of each of these. I have had students go to their pediatrician in one afternoon and come out with an ADHD diagnosis and a prescription. It took me almost a year for both of my sons to get their diagnoses. We filled out HOURS of paperwork, and they underwent extensive observation and testing. Sometimes, ASD diagnoses are missed because pediatricians will jump too quickly to ADHD.
Unlike ADHD, there is not a drug that one can take to "control" ASD (although, parents of children with ADHD might admit that the medications--and their side effects-- are no miracle cure). Typically, children undergo a variety of therapies for behavior modification.
Because early intervention through therapy has shown a great deal of success in children "merging" into society a bit more successfully, it is best to determine the diagnosis as early as possible. We realized something was wrong with Max when he was not speaking at around 15 months. As heartbreaking as it was to realize there was something significantly wrong with my toddler, we put aside the sucker punch life handed us and got him the help he needed. I stand firm that he would not be speaking or interacting as well as he is today as a first grader had we waited on our suspicions. The pediatrician was looking for medical causes of his symptoms. We researched and talked with others, and we realized this was much bigger that fluid in his ears.
So why such an increase in children with ASD? My theories:
- the definition of autism became wider when it was expanded to be a spectrum of disorders, therefore, some autistic behaviors that existed in children were missed
- a generation of parents went undiagnosed and now are having children on the spectrum
- there is a genetic link to ASD and parents can carry the gene but not have autism themselves
Sunday, April 1, 2012
Autism Awareness Month Begins
So here we are on April Fools Day. Day 1 of sharing my reflections on parenting and teaching children with autism spectrum disorders. I decided to go a different route this year and use the blog to relay some things of which I have become more aware since my sons were diagnosed on the autism spectrum. Previously, I have changed my profile picture on Facebook, made a hallway bulletin board, read a book with my students which had a character with autism, and used this month as a reminder of things I know about dealing with persons with ASD but may have gotten a little sloppy doing. I will continue these, but I have added a little more on the blog. So here we go!
Awareness Tid Bit, Day 1:
You might hear people shying away from calling a person "autistic." Autism is just one characteristic that defines a person on the "spectrum." Just as I would not like to be called "four-eyed JoLynn" or "broken-legged JoLynn," the idea of weaning the public off of calling a person "autistic" helps avoid a narrow perception of his/her challenges. Therefore, try these on for size: "persons with autism," "child with ASD," "person on the spectrum."
The graphic above helps greatly in understanding that Autism Spectrum Disorders (ASD) are like an umbrella. It's not necessarily a hierarchy of diagnoses, although you might hear someone being considered "higher functioning" than someone else. That means that person has skills that might allow better merging with societal norms. My sons are diagnosed with autistic disorder (he's 7) and Asperger's Disorder (sometimes called Asperger's Syndrome...he's 15). Just because someone is diagnosed as one section of the spectrum does not mean he cannot have traits from other places on the spectrum. Each individual has a unique way of demonstrating ASD. Hence, the acceptance of the puzzle piece as the symbol of Autism Awareness. It is quite a puzzle!
Awareness Tid Bit, Day 1:
You might hear people shying away from calling a person "autistic." Autism is just one characteristic that defines a person on the "spectrum." Just as I would not like to be called "four-eyed JoLynn" or "broken-legged JoLynn," the idea of weaning the public off of calling a person "autistic" helps avoid a narrow perception of his/her challenges. Therefore, try these on for size: "persons with autism," "child with ASD," "person on the spectrum."
The graphic above helps greatly in understanding that Autism Spectrum Disorders (ASD) are like an umbrella. It's not necessarily a hierarchy of diagnoses, although you might hear someone being considered "higher functioning" than someone else. That means that person has skills that might allow better merging with societal norms. My sons are diagnosed with autistic disorder (he's 7) and Asperger's Disorder (sometimes called Asperger's Syndrome...he's 15). Just because someone is diagnosed as one section of the spectrum does not mean he cannot have traits from other places on the spectrum. Each individual has a unique way of demonstrating ASD. Hence, the acceptance of the puzzle piece as the symbol of Autism Awareness. It is quite a puzzle!
Friday, February 3, 2012
Paprika App
Thursday, February 2, 2012
"Equal" Rights
For almost my entire life, abortion (with some restrictions) has been legal in my country. I have always been vocal about how I feel regarding this issue. If you don't want to get into a knock-down, drag-out argument with me, it's best not to even start the discussion, as I will not let it go.
To those who argue that this is a "women's" issue, consider your hypocrisy. You fight for equal rights, but for whom? Your argument allows that women are more important than vulnerable children. Your very nature should be to PROTECT children, not destroy them. However, your alleged needs (wants) are supposed to trump the rights and needs of a little human.
Oh, but "it's" not really a "human?" Tell that to someone who has dealt with infertility issues. Tell that to someone who has seen the human, the size of a piece of rice, ALIVE in a sonogram after trying like hell to conceive. The argument is a lame one, and one that absolutely cannot be proven. You may say it cannot be disproven, either. So, if we can neither prove nor disprove the "life" aspect of conception, how irresponsible is it to allow the procedure?
Recently, the Komen Foundation has pulled its funding for Planned Parenthood due to the fact that it is under investigation for using federal funding for abortions. This has some people pretty angry. I am angry, too. I am angry that killing children seems to be OK, and that now some people think that Komen should lose its funding because of this move. The arguments have been based on the money from Komen paying for cancer screenings gotten via Planned Parenthood. But, wait... with national health care, I thought that things like breast cancer screening were going to be "covered." I mean, that's what I was told when I listened to the rhetoric involved in that discussion.
People are lumping this into a purely political move. As if no one in their right minds could possibly make this decision. As if no one but lunatics would actually be anti-abortion...I mean, anti-woman...oh, wait... I AM a woman...And I am anti-abortion, not solely because my church tells me, or that it's a political move, but that I truly in my heart and gut believe it is WRONG and our society should be ashamed of itself in allowing it. I am ashamed of the Democratic party...a party whom I joined because they were supposed to be for the underdog, for the marginal, for the minority. Yet, they have grown into anything but that platform.
Hold an infant for an hour. You'll understand what I mean. Or talk to someone who can't get pregnant and deals with a desperate yearning to have a child. Maybe you'll get it. How about mandatory sonograms for those considering an abortion so that they can REALLY give informed consent? Yeah, I didn't think so.
To those who argue that this is a "women's" issue, consider your hypocrisy. You fight for equal rights, but for whom? Your argument allows that women are more important than vulnerable children. Your very nature should be to PROTECT children, not destroy them. However, your alleged needs (wants) are supposed to trump the rights and needs of a little human.
Oh, but "it's" not really a "human?" Tell that to someone who has dealt with infertility issues. Tell that to someone who has seen the human, the size of a piece of rice, ALIVE in a sonogram after trying like hell to conceive. The argument is a lame one, and one that absolutely cannot be proven. You may say it cannot be disproven, either. So, if we can neither prove nor disprove the "life" aspect of conception, how irresponsible is it to allow the procedure?
Recently, the Komen Foundation has pulled its funding for Planned Parenthood due to the fact that it is under investigation for using federal funding for abortions. This has some people pretty angry. I am angry, too. I am angry that killing children seems to be OK, and that now some people think that Komen should lose its funding because of this move. The arguments have been based on the money from Komen paying for cancer screenings gotten via Planned Parenthood. But, wait... with national health care, I thought that things like breast cancer screening were going to be "covered." I mean, that's what I was told when I listened to the rhetoric involved in that discussion.
People are lumping this into a purely political move. As if no one in their right minds could possibly make this decision. As if no one but lunatics would actually be anti-abortion...I mean, anti-woman...oh, wait... I AM a woman...And I am anti-abortion, not solely because my church tells me, or that it's a political move, but that I truly in my heart and gut believe it is WRONG and our society should be ashamed of itself in allowing it. I am ashamed of the Democratic party...a party whom I joined because they were supposed to be for the underdog, for the marginal, for the minority. Yet, they have grown into anything but that platform.
Hold an infant for an hour. You'll understand what I mean. Or talk to someone who can't get pregnant and deals with a desperate yearning to have a child. Maybe you'll get it. How about mandatory sonograms for those considering an abortion so that they can REALLY give informed consent? Yeah, I didn't think so.
Subscribe to:
Posts (Atom)