When my kids were little bitty, I longed for the day when they started school. I loved school as a kid and I wanted to love the schools my kids went to. We purposely picked the district in which we live bypassing another one close by. From the time Drew was out of the early childhood hall at his preschool and moved into the "big kid" hall, life was not always good and this was so disheartening for me. Once private kindergarten was coming to an end and we had to decide what to do next for Drew, we decided to dive into public school and see how Drew would do.
PUBLIC SCHOOL
I love our public school system in this country. I taught there for seven years before I had my kids. I will most likely go back to teaching in a few years. Most teachers do it because they love kids and love their subject areas. I like knowing that my child is spending the day with another adult who loves passing on a love of learning as much as I do. There are well-known people who are wealthy enough to afford private schools but they still send their kids to public school. Caroline Kennedy Schlossberg, who is a huge advocate for New York City public schools, comes to mind. Drew has a team of people pulling for him at his school...his teacher, the school psychologist, the assistant principal and the school counselor. I know that they are legally required to help him in the least restrictive way possible but I get the feeling these ladies really want to help. They are all deeply kind. We have been honest with them about his diagnosis and his treatment. We expect them to be honest with us about his school experience and they have been. We are so pleased with his progress there. He currently has all As. His teacher loves him unconditionally and is always ready with something good to say about him. We spent all of kindergarten hearing mostly about his struggles so it's refreshing.
One of the frustrations about public school has to be the red tape and confusion regarding a certain population of special needs kids. Autism spectrum seems to be something that public schools still stumble over. Our district places autism and Asperger's under the special education umbrella but pervasive developmental disorder is not. Other districts place all autism diagnoses under their special ed umbrella. As I've learned, there is no one standard for school districts. Drew does not qualify for special ed services even though he is on the autism spectrum. It's so confusing and a little frustrating. I would hate to take resources away from a child who is struggling even more but at the same time, Drew does struggle. We, of course, have other options like 504 placement but we aren't visiting that right now.
PRIVATE SCHOOL
Frankly, public schools are often better equipped than private schools (with the exception of the specialized therapeutic private schools) to help special needs kids. Private schools are well within their rights to ask a family to remove a "difficult" child from the school. Drew's preschool did a great job of meeting his needs, academic and emotional, until he was in his preschool (age 3) year. His teachers began reporting difficulties with meltdowns, inflexibility and social skill deficits. We had these problems at home too, of course, all of which culminated in testing and a diagnosis.
I often felt the school, ironically, had no interest in being flexible themselves. Although they certainly didn't "have" to be more helpful, it is painful to realize that this Christian school didn't "want" to be. Drew didn't fit the mold of many of the kids in the school but they tolerated him, most likely because it wouldn't be kosher to kick out a kid whose family were church members (although I know they have done that before) and they might have kept him around because he's very smart and, aside from his difficulties, is very teachable. Individuality is really a rare thing at this school. Much of the artwork on the bulletin boards is identical, as if the teachers were standing over their shoulders directing the students' creativity. I was happy to see the construction paper snowmen Maddie's class assembled last week. Each one was different (Mad assembled hers upside down so he was standing on the small circle and his face was on the large one at the top.) However, on another class' bulletin board which exclaimed that each student was beautifully different like snowflakes, each snowflake looked exactly the same. What???
I want to stop at this point and clarify that this is not an indictment of our church school (Maddie will continue there) and it's not a judgement of all private schools. This is one family's experience of one small private school. Generally speaking, my kids have had a good experience here. They have learned SO much and been exposed to Christian principles that are important to us. Many of the teachers there are so, so kind and loving. Maddie struggled physically when she was a baby and her teachers at the school had a huge part in her gaining strength and finally walking. The school always appreciated Drew's intelligence and the teachers were always patient with Drew if not always understanding of his issues.
That being said, I still am not sure that a school like this is best for special needs kids. They are often misunderstood and labeled as a "problem." I was always afraid Drew had sort of a "reputation" among the teachers at the church school because, let's face it, even the most professional of teachers talk about their students to each other. To the best of my knowledge, the teachers at the school do not receive any inservice training in either spotting or teaching special needs kids. Drew was fortunate enough to have a former public school teacher/counselor as a preschool teacher and she had enough knowledge in the area to be comfortable enough to tell us Drew was struggling.
WHAT'S THE SAME
Despite the different environments, there are some universal truths that have been apparent at both schools.
The bullying. Sigh..... Drew is a pretty passive kid as long as he's left alone. He has a lot of difficulty once kids start picking on him. He does not understand the concept of ignoring a little punk. We've tried and tried to explain it to him but it escapes him. He was picked on in kindergarten for a good part of the year. At the beginning of this year in first grade, Drew was targeted by a kid in his class. It's better now although I'm not entirely sure what has changed aside from the fact that Drew has been doing so much better. Perhaps the little bully saw Drew as an easy target since he was already getting in trouble. Maybe it was how Drew was handling himself when he got in trouble. I really don't know. However, I do know that Drew is finally coming home without bruises and scratches.
The learning. Drew is learning so much. He can add! He's reading exceptionally well. He gets 100s on almost all of his spelling tests. He getting better at the things he learned in kindergarten and he's learning entirely new things.
The love of recess. I suppose this will never change. He's going to be disappointed in junior high when they don't have recess there. :)
Sunday, January 16, 2011
Tuesday, January 4, 2011
It Took Me Long Enough
I've been meaning to start a blog about raising a son with autism ever since he was diagnosed at about the age of 4. He's now 7 and I'm just now getting around to it. I've been busy. I've been grieving. I've been looking for doctors. I've been talking to teachers and answering emails and fielding calls from the school principal. To sum up, there's been no time for me to expound on the good things and bad things about parenting a child who lives in a (sometimes) misunderstanding world.
Definitions:
autism spectrum disorders (ASD): This term is not officially used on the Diagnostic and Statistical Manual but the expression is used sometimes because there is a continuum of deficits and issues that exist throughout all of the disorders such as classic autism, pervasive developmental disorder (Drew's diagnosis), and Asperger's. The DSM-5 will most likely move to an umbrella diagnosis of "autism spectrum disorder" or ASD. There are a wide variety of issues with people on the AS but the problems that are usually most noticeable to society are a lack of or difficulty with social skills and social interactions.
pervasive developmental disorder (PDD): This is where things get confusing because some researchers consider PDD to be an "umbrella" disorder under which they would put Aspergers and autism. It is characterized (as other autism disorders are) by social deficiencies and perseverating or repetitive behaviors and narrow interests. To add to the confusion, there is also a diagnosis of PDD-NOS (not otherwise specified). This is used when the criteria are not there to diagnose autism or Asperger's. Drew was diagnosed with PDD-NOS. There is a lot of gray area still in the diagnosis of ASD, which compared to some psychological problems, is relatively new. Some specialists might say Drew has Asperger's whereas some other might say he has PDD. It's very fuzzy which can be frustrating when you are me. I am a science teacher by education. I like concrete answers. The prognosis for Drew is quite good and he will most assuredly have a great life as an adult.
neurotypical (NT): I love this word. It was coined by those in the autism community and is used to refer to those of us NOT on the spectrum or what society perceives as having "normal" abilities to read social cues and interact with people in expected ways. I don't know the exact history of the word but I imagine that some autistic people got tired of hearing the word "normal" to describe non-autistic people. For people who are autistic, the way they interact with people IS their "normal" but maybe it just isn't accepted as such.
Everyday Life With Drew:
The first thing most people notice about Drew once they start talking to him is his remarkable vocabulary. At 7, he can read (but with weak comprehension) at a 4th grade level. His comprehension at his first grade level is good. He has always been good at picking up words, remembering them and using them correctly. He seems to enjoy math quite a bit and often figures out the answer without the "show your work" aspect that most teachers insist on. He is funny. He is a good actor. He uses a computer independently and can work all of the remotes that are required to watch TV, a movie or play games. He has a remarkable memory. He can be organized when he wants to be. He likes school. He is great with adults and older kids such as our babysitters.
Those are the good things about him. When Drew is having a good day, he is a real joy. He's fun and inquisitive. However, he wants everything a certain way. He can be inflexible when it comes to food. He gets upset by loud noises so going to a regular movie is out of the question. He is often angered when the schedule changes. First days back at school after a break are usually not good days. First days of vacation when school is out are usually not good days. He asks a million questions about very simple things such as going to the doctor, going to the mall....he always has to know what to expect. He gets anxious easily.
Parenting Drew does not allow for "letting your guard down" or having a relaxing outing to the park or whatever. We have to anticipate many things....will he eat what's offered, will there be something loud there that will upset him, will he be okay with the other kids, etc., etc. Bobby and I have often remarked to each other that parenting Drew requires more than we ever thought we'd have to give. Staying one step ahead of Drew and Drew's brain is exhausting. I never really notice this until he's with the grandparents for a visit or Bobby and I get a weekend away. When this happens, I find myself actually relaxing...truly being calm...turning part of my brain off.
Drew's diagnosis was not a surprise. My background and Bobby's profession have afforded us a lot of knowledge on special needs children. We knew there was "something" going on with Drew but we weren't sure of the exact diagnosis. Upon getting that diagnosis, I had two feelings. One was that of relief because for awhile we just chalked up Drew's difficulties to our parenting. We KNEW we were good parents but when your child is having problems, who else can one blame? My second feeling was that of genuine grief and sadness. I had to grieve for the child I thought I was going to be raising. I think I still am grieving a bit and I might always be on some level but I can't let that get in the way of getting Drew the best help we can find. We have been so blessed by the caring professionals placed in our path.
Drew is a remarkable kid. Terribly smart and funny. He is by no means an "easy" child to raise but I think that because we have to work harder to help him, we are getting far more appreciation and joy out of the good times than if Drew were a neurotypical child.
Definitions:
autism spectrum disorders (ASD): This term is not officially used on the Diagnostic and Statistical Manual but the expression is used sometimes because there is a continuum of deficits and issues that exist throughout all of the disorders such as classic autism, pervasive developmental disorder (Drew's diagnosis), and Asperger's. The DSM-5 will most likely move to an umbrella diagnosis of "autism spectrum disorder" or ASD. There are a wide variety of issues with people on the AS but the problems that are usually most noticeable to society are a lack of or difficulty with social skills and social interactions.
pervasive developmental disorder (PDD): This is where things get confusing because some researchers consider PDD to be an "umbrella" disorder under which they would put Aspergers and autism. It is characterized (as other autism disorders are) by social deficiencies and perseverating or repetitive behaviors and narrow interests. To add to the confusion, there is also a diagnosis of PDD-NOS (not otherwise specified). This is used when the criteria are not there to diagnose autism or Asperger's. Drew was diagnosed with PDD-NOS. There is a lot of gray area still in the diagnosis of ASD, which compared to some psychological problems, is relatively new. Some specialists might say Drew has Asperger's whereas some other might say he has PDD. It's very fuzzy which can be frustrating when you are me. I am a science teacher by education. I like concrete answers. The prognosis for Drew is quite good and he will most assuredly have a great life as an adult.
neurotypical (NT): I love this word. It was coined by those in the autism community and is used to refer to those of us NOT on the spectrum or what society perceives as having "normal" abilities to read social cues and interact with people in expected ways. I don't know the exact history of the word but I imagine that some autistic people got tired of hearing the word "normal" to describe non-autistic people. For people who are autistic, the way they interact with people IS their "normal" but maybe it just isn't accepted as such.
Everyday Life With Drew:
The first thing most people notice about Drew once they start talking to him is his remarkable vocabulary. At 7, he can read (but with weak comprehension) at a 4th grade level. His comprehension at his first grade level is good. He has always been good at picking up words, remembering them and using them correctly. He seems to enjoy math quite a bit and often figures out the answer without the "show your work" aspect that most teachers insist on. He is funny. He is a good actor. He uses a computer independently and can work all of the remotes that are required to watch TV, a movie or play games. He has a remarkable memory. He can be organized when he wants to be. He likes school. He is great with adults and older kids such as our babysitters.
Those are the good things about him. When Drew is having a good day, he is a real joy. He's fun and inquisitive. However, he wants everything a certain way. He can be inflexible when it comes to food. He gets upset by loud noises so going to a regular movie is out of the question. He is often angered when the schedule changes. First days back at school after a break are usually not good days. First days of vacation when school is out are usually not good days. He asks a million questions about very simple things such as going to the doctor, going to the mall....he always has to know what to expect. He gets anxious easily.
Parenting Drew does not allow for "letting your guard down" or having a relaxing outing to the park or whatever. We have to anticipate many things....will he eat what's offered, will there be something loud there that will upset him, will he be okay with the other kids, etc., etc. Bobby and I have often remarked to each other that parenting Drew requires more than we ever thought we'd have to give. Staying one step ahead of Drew and Drew's brain is exhausting. I never really notice this until he's with the grandparents for a visit or Bobby and I get a weekend away. When this happens, I find myself actually relaxing...truly being calm...turning part of my brain off.
Drew's diagnosis was not a surprise. My background and Bobby's profession have afforded us a lot of knowledge on special needs children. We knew there was "something" going on with Drew but we weren't sure of the exact diagnosis. Upon getting that diagnosis, I had two feelings. One was that of relief because for awhile we just chalked up Drew's difficulties to our parenting. We KNEW we were good parents but when your child is having problems, who else can one blame? My second feeling was that of genuine grief and sadness. I had to grieve for the child I thought I was going to be raising. I think I still am grieving a bit and I might always be on some level but I can't let that get in the way of getting Drew the best help we can find. We have been so blessed by the caring professionals placed in our path.
Drew is a remarkable kid. Terribly smart and funny. He is by no means an "easy" child to raise but I think that because we have to work harder to help him, we are getting far more appreciation and joy out of the good times than if Drew were a neurotypical child.
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