First, a little rant that I can't keep inside: For some reason we have been getting US magazine at my office. Jenny McCarthy is on the cover this week, with the story title "How I Saved My Son." I have tried (mostly) to keep quiet about her- some of my friends may like her or agree with her and I try to keep a live and let live mentality... But this woman does not speak for me. She is not "autism mom" personified, and I'm afraid that the general public sees her that way.
US magazine is not high-level journalism, of course, but this article contains quotes from her like "I made a deal with God the day he was diagnosed. I said, 'You fix my boy, you show me the way and I'll teach the world how I did it.' ... We're recovering kids from autism! Evan was nonspeaking, hands flapping in the corner and didn't know anyone was in the room. Look where he is now. I healed a vaccine injury." Well, as long as it's all about you!
It really reads as if this woman is using her child's disability to maintain her own fame. Please, God, let me write a book about my child's struggles, so that I can go on Larry King and yell at doctors from the American Academy of Pediatrics. If God were going to bestow special autism mom wisdom upon somebody? I can think of a dozen other women I know personally that he might choose- that he already has chosen, as a matter of fact. And those women put their heads down, get to work, hug their child and hold their friends' hands.
My son also has many more skills than he did when he was diagnosed. I don't claim to have cured him. He has grown and learned, like any child will unless he is locked in a closet somewhere. We all do our best Jenny, and I thank God for the other autism moms that I look to as sisters. But I don't count you as one of them. You are doing us all a disservice when you claim that you are the first and only mom to care enough to try to help your son. Your son will likely continue to struggle in his life. You need to stop parading him around as a "cure" story. You were and are blessed to have him in your life, and for all you think you have done for him? He has done more for you than you will ever realize.
__________
Ahem. Anyway. Last night a few exciting things happened:
1. Henry brought home a BIRTHDAY PARTY INVITATION. For a boy in his class. I honestly can't remember the last time Henry was invited to a birthday party. It was probably when he was 4 years old- for another kid at L's house. He has never been invited to do anything with a classmate.
2. We went to the open house at Henry's new school. We met Mr. D (the "best buddy" that Henry hangs out with at recess time), the classroom teacher, the music teacher, the classroom supervisor, and some kids in Henry's class. The cool thing was that the kids seemed to say hello to one another spontaneously- without parents urging and nudging them toward one another.
Mr. D told me that he and several others have been so touched by Henry telling them that he's "going to miss them". We talked about how that's Henry's way of reaching out- trying to let you know that he cares about you. I thought he only said those things to Bill and me, but whaddya' know? He has some other special people in his life too.
There is one mother that I recognize from the tour I took of another school for autistic kids this spring. (The tour that left me in tears). So I know her family is new to this school also. I was talking to one of the teachers when I heard her daughter come over and say hi to Henry. He said hi back. that was really about all, but my eyes met the girl's mother's eyes, and I knew we were both thinking the same thing. I knew we were both about ready to burst with pride and with relief that our children are finding more opportunities than had been open to them before.
As I said in my little rant above, our children will continue to grow and change and learn, no matter what we do, or even in spite of what we do. But I am hopeful that Henry's natural growth and learning will be fostered by his new school environment. I feel like we're on the right track.
Showing posts with label rants. Show all posts
Showing posts with label rants. Show all posts
Friday, October 17, 2008
Wednesday, October 01, 2008
avenues
Henry started taking swimming lessons his first summer in the Easter Seals program- the summer of '04. We added gymnastics in the spring of '06. Summer of '07 we found riding lessons too. Of course his little brother wanted to try all those activities too, and how could we say no? Grandparents helped pay for the classes and lessons at times, but it added up.
One day this spring I got up the nerve to ask his special needs gymnastics teacher "do other families have some kind of financial aid to help pay for their classes?" "Why yes," she replied, "most of them do. Let me go grab one of the forms that I have to fill out, and I'll tell you who the agency is."
And that's how I found out about MRDD, my state's department of Mental Retardation and Developmental Disabilities. I called and they sent me some paperwork to fill out. Early in the summer Henry and I had an "intake" meeting, where they asked him a few questions to roughly gauge his ability level, and I received notice later in the summer that we were eligible for their services.
It turns out that they will pay for additional speech and occupational therapy, respite care, and bunches of other stuff that one's disabled child might need.
I am so happy to have found this agency, but also disappointed that I didn't find them sooner. Yesterday I had my initial meeting with a caseworker. He told me that he recently met with a new client whose 11-year-old child has Downs Syndrome. Why in the world, we wondered, wasn't that family told about MRDD before they left the hospital with that baby? Why isn't it someone's job to make sure that the people who need assistance find out about what's available?!
This caseworker handed me printouts about PDD-NOS and therapies for autism. Thanks. I could have used this stuff 5 years ago. We also elected to place Henry on the waiting list for a couple different kinds of funding available to disabled adults. We don't think that far into the future very often, and I like to think that Henry won't need any assistance when he is an adult. But if he does- even, say, someone to help with his laundry, these waivers will be there to help. (That's assuming, of course, that the current funding is available 9 years from now, which it probably won't be.)
It was nice to talk to someone who is familiar with the resources available to autistic children, but who also is neutral. He's not a parent who is swearing by this or that therapy. Through his experience with hundreds of families, he confirmed some things that I believe: other parents can be your best resource- talk to them and ask about what they're doing. But also, what works for one child/family may not work for another. He has known families who love the school Henry now attends*, and others who pulled their child out of the school.
As I write this, I'm a little ashamed that I should feel so affirmed by someone sitting in an office telling me to trust my gut about what's right for my child. But I guess for me, I put more stock in someone's opinion who can form judgements based upon real-life observation of the children that pass through his agency than I do a hysterical celebrity mom who demands that everyone see autism through her lens.
I'm rambling. The real point I wanted to make here was just that resources are out there, and you may not find out about them without asking questions. Never stop asking questions. A door may open up that you never knew was there.
The Easter Seals office has moved, and they no longer have a pool. The woman who gave Henry horse-riding lessons had a riding accident herself and broke her back. It would be easy to give up on those activities altogether. But Henry enjoyed those activities. They are good for him. I need to keep asking questions and look for new avenues for Henry to continue to pursue those interests.
*I am cautiously optimistic about Henry's new school. My mom reports that he participated happily in the Grandparents Day activities, and he has not argued at home one bit about doing homework- quite a change from last year. Knock on wood please.
One day this spring I got up the nerve to ask his special needs gymnastics teacher "do other families have some kind of financial aid to help pay for their classes?" "Why yes," she replied, "most of them do. Let me go grab one of the forms that I have to fill out, and I'll tell you who the agency is."
And that's how I found out about MRDD, my state's department of Mental Retardation and Developmental Disabilities. I called and they sent me some paperwork to fill out. Early in the summer Henry and I had an "intake" meeting, where they asked him a few questions to roughly gauge his ability level, and I received notice later in the summer that we were eligible for their services.
It turns out that they will pay for additional speech and occupational therapy, respite care, and bunches of other stuff that one's disabled child might need.
I am so happy to have found this agency, but also disappointed that I didn't find them sooner. Yesterday I had my initial meeting with a caseworker. He told me that he recently met with a new client whose 11-year-old child has Downs Syndrome. Why in the world, we wondered, wasn't that family told about MRDD before they left the hospital with that baby? Why isn't it someone's job to make sure that the people who need assistance find out about what's available?!
This caseworker handed me printouts about PDD-NOS and therapies for autism. Thanks. I could have used this stuff 5 years ago. We also elected to place Henry on the waiting list for a couple different kinds of funding available to disabled adults. We don't think that far into the future very often, and I like to think that Henry won't need any assistance when he is an adult. But if he does- even, say, someone to help with his laundry, these waivers will be there to help. (That's assuming, of course, that the current funding is available 9 years from now, which it probably won't be.)
It was nice to talk to someone who is familiar with the resources available to autistic children, but who also is neutral. He's not a parent who is swearing by this or that therapy. Through his experience with hundreds of families, he confirmed some things that I believe: other parents can be your best resource- talk to them and ask about what they're doing. But also, what works for one child/family may not work for another. He has known families who love the school Henry now attends*, and others who pulled their child out of the school.
As I write this, I'm a little ashamed that I should feel so affirmed by someone sitting in an office telling me to trust my gut about what's right for my child. But I guess for me, I put more stock in someone's opinion who can form judgements based upon real-life observation of the children that pass through his agency than I do a hysterical celebrity mom who demands that everyone see autism through her lens.
I'm rambling. The real point I wanted to make here was just that resources are out there, and you may not find out about them without asking questions. Never stop asking questions. A door may open up that you never knew was there.
The Easter Seals office has moved, and they no longer have a pool. The woman who gave Henry horse-riding lessons had a riding accident herself and broke her back. It would be easy to give up on those activities altogether. But Henry enjoyed those activities. They are good for him. I need to keep asking questions and look for new avenues for Henry to continue to pursue those interests.
*I am cautiously optimistic about Henry's new school. My mom reports that he participated happily in the Grandparents Day activities, and he has not argued at home one bit about doing homework- quite a change from last year. Knock on wood please.
Thursday, August 14, 2008
Tonight we have "meet-the-teacher night" at Henry's new school. Now, before you get all excited and think that I kicked some school district butt to get him in, let me explain.
It turns out that, if you can't get your school district to agree to send your child to the private school, (I couldn't, not without calling an IEP meeting which couldn't be done until after school had already started) you can send him to the "community school" (called charter schools in most other states) arm of the same school. (If there is a community school slot available, and if the spot is offered to you.) You withdraw your child from the district of residence and enroll him in the community school.
Holy shit, this stuff is unclear. One person tells you one thing and the next person doesn't know anything about that, and you send an e-mail and leave 15 messages and wait a week to figure out what to do next. I feel like I've been through the wringer.
It doesn't help that my husband is still not drinking that kool-aid, while I'm guzzling it by the gallon. At least he's willing to give it a shot, seeing as I'm so flipping sure about this.
I'll agree with him that the place has a bit of a cult-like feel to it. Everyone is so friendly and smiling and talks in such soothing tones. But I like to think that that's because they work with autistic kids all day, and friendly, smiling and soothing are good ways to be in that environment--not because they're trying to brainwash us.
Our school district's refusal to agree to place Henry here just reinforces my feeling that they don't really care about my child. And their argument that mainstreaming in the public school prepares my child for the "real world" he will someday work and live in holds no merit with me. You know what will prepare my child for the future? Being in a safe, nurturing, understanding, respectful environment that works on his weaknesses and works with his strengths to give him an excellent education.
The "real world" can be a pretty shitty place, and I don't see any other parents going out of their way to prepare their kids for that. Why should I be expected to?
I think Bill summed it up pretty well with this analogy: a couple summers ago Henry played t-ball through our city's parks & rec dept. We told them up front that he had autism, and they were quite willing to work with him and include him. And it was fine- it was a decent experience. But then this summer we found the Miracle League. They did more than just let my kid play. The team was made for kids like him, and parents like us, and it was more than we could have hoped for. This is my hope for our new school.
I've realized that part of this is selfish. I went to a parent orientation meeting the other night, and had the most unusual feeling as I pulled into the parking lot full of cars with autism ribbons on their bumpers. The feeling grew as I looked around the room and saw parents nodding and smiling at the school founders who were speaking. I think this feeling that I'm not so used to is belonging. As Drama Mama would say, these are our people.
Just as my son will no longer be relegated to a room at the end of the hall, I will no longer be relegated to the edges of the parental realm. I would not have participated in the PTO at his old school, because he didn't really participate in the school's activities. This new school requires a lot more parental involvement, and I think that will be good for me- for all of us.
I was telling a friend about the baseball analogy- a friend who's son is 10 and plays select-league baseball. I said "yeah, maybe Miracle League isn't 'real world' baseball, but I don't care." She interrupted me and said "Or maybe Miracle League baseball is 'real world' baseball. Just as much as our league is. It's about giving everyone a chance to play."
It turns out that, if you can't get your school district to agree to send your child to the private school, (I couldn't, not without calling an IEP meeting which couldn't be done until after school had already started) you can send him to the "community school" (called charter schools in most other states) arm of the same school. (If there is a community school slot available, and if the spot is offered to you.) You withdraw your child from the district of residence and enroll him in the community school.
Holy shit, this stuff is unclear. One person tells you one thing and the next person doesn't know anything about that, and you send an e-mail and leave 15 messages and wait a week to figure out what to do next. I feel like I've been through the wringer.
It doesn't help that my husband is still not drinking that kool-aid, while I'm guzzling it by the gallon. At least he's willing to give it a shot, seeing as I'm so flipping sure about this.
I'll agree with him that the place has a bit of a cult-like feel to it. Everyone is so friendly and smiling and talks in such soothing tones. But I like to think that that's because they work with autistic kids all day, and friendly, smiling and soothing are good ways to be in that environment--not because they're trying to brainwash us.
Our school district's refusal to agree to place Henry here just reinforces my feeling that they don't really care about my child. And their argument that mainstreaming in the public school prepares my child for the "real world" he will someday work and live in holds no merit with me. You know what will prepare my child for the future? Being in a safe, nurturing, understanding, respectful environment that works on his weaknesses and works with his strengths to give him an excellent education.
The "real world" can be a pretty shitty place, and I don't see any other parents going out of their way to prepare their kids for that. Why should I be expected to?
I think Bill summed it up pretty well with this analogy: a couple summers ago Henry played t-ball through our city's parks & rec dept. We told them up front that he had autism, and they were quite willing to work with him and include him. And it was fine- it was a decent experience. But then this summer we found the Miracle League. They did more than just let my kid play. The team was made for kids like him, and parents like us, and it was more than we could have hoped for. This is my hope for our new school.
I've realized that part of this is selfish. I went to a parent orientation meeting the other night, and had the most unusual feeling as I pulled into the parking lot full of cars with autism ribbons on their bumpers. The feeling grew as I looked around the room and saw parents nodding and smiling at the school founders who were speaking. I think this feeling that I'm not so used to is belonging. As Drama Mama would say, these are our people.
Just as my son will no longer be relegated to a room at the end of the hall, I will no longer be relegated to the edges of the parental realm. I would not have participated in the PTO at his old school, because he didn't really participate in the school's activities. This new school requires a lot more parental involvement, and I think that will be good for me- for all of us.
I was telling a friend about the baseball analogy- a friend who's son is 10 and plays select-league baseball. I said "yeah, maybe Miracle League isn't 'real world' baseball, but I don't care." She interrupted me and said "Or maybe Miracle League baseball is 'real world' baseball. Just as much as our league is. It's about giving everyone a chance to play."
Tuesday, July 22, 2008
today
I'm a libra, see, and I guess that's why I need to measure everything. Why a vacation has to have both a glass half full and a glass half empty point of view. Why I need to always take the other side of every argument (according to my husband, anyway). And why a day like today has to be remembered not only for the good that happened.
Our interview for the private autism school was very good. As advised, I really tried to listen to my gut throughout. And I got a good vibe. This spring I started a post (but never finished it) about a new private autism school that I visited in my quest for a summer placement for Henry. I was near hysterical by the time the tour ended. You could say my gut didn't like the place.
Because of that experience, my expectations for this more established school were heightened. I was told when we scheduled the interview that they would be getting to know Henry, we would be getting to know the school at this time, and then I would be contacted later on with their decision. But the administrator who met with us told me after about 20 minutes that she thought Henry would be just right for the position available, and she would reserve it for us. (I attribute this not only to my son's charm, but also to this woman's soft heart. She told me that she's only allowed to do a certain number of intake interviews, because she has such a hard time turning anyone away.)
My head is spinning. The place where we interviewed was the high school location (a former athletic club). The elementary school is several miles away, in a former day care center, and we have scheduled a tour there later this week. I mean, I can't just sign my kid up without visiting the school!
If you're interested in knowing more about the school, e-mail me privately. In brief, they have around 300 students in preschool through 12, and actually have some graduates who are remaining to take community college classes. Henry would initially be placed in an "intensive educational and social classroom" with the aim of being quickly integrated with the peer models.
After we briefly discussed Henry's strengths and weaknesses, Dr. M told me that they would be likely to work closely with Henry to determine why he has such a deficit with math, but also would encourage his reading strength "focusing on his interests", to see how far he could take this ability. "Maybe he could help in the library" is another idea she tossed out, which just about made me melt out of my chair.
We stopped over at the elementary location, just to see where it was and to schedule a tour. Things were chaotic, as it was pick-up time for the summer program. But I kind of liked that. I saw lots of affectionate, smiling teachers, smiling kids, smiling parents. Kind of like any other school, but with a bit more oversight. And as we were getting back into the car, a young woman driving by smiled and waved. It was the same teacher I had met at gymnastics, back when I started thinking about this school again. I haven't seen her since, but she remembered us. Seemed like a good sign.
Assuming we don't think of any reason why we shouldn't grab this opportunity, my next step is to contact the special ed director for our district and basically ask her if they will pay for Henry to attend this school. Dr. M thought they might, because she thinks it's actually cheaper for them than the county program he is now placed in. But if they don't, we will have other options.
Now I guess I was riding some kind of uber-autism-mom wave after the interview, and took both boys to Toys R Us. After exhaustive consideration, Thomas picked out a Batmobile. Henry picked out a 101 Dalmations DVD, which we already have. He's been talking about it for weeks, ever since he lost the papers that were in the first copy.
I've been trying to use logic with him, which is, of course, useless. "Henry, I really don't want to spend $20 for a DVD we already have, just so you can get the papers inside."
His response? "It doesn't cost $20."
Um, actually it does.
I'm not usually one to ask for special treatment because my son is autistic. But today I decided to give it a shot. I went up to the customer service counter, explained the situation, and asked if there was any way we could open up a dvd, take out the papers, and they could, like, wrap it back up and still sell it. A manager was called over, who listened politely, but answered in the negative.
So I bought Henry another copy of 101 Dalmations. And now I'm pissed. I'm pissed because if I were Jenny McCarthy and had a million dollars, I would just buy my kid whatever he wanted to satisfy his perseveration.
But, if I were Jenny McCarthy and went on Larry King and talked about how my son loves the papers from inside DVDs, every yahoo in America would pack up their DVD papers and send them to me.
So, that's why today had a little bit of bad in it, but mostly good :-)
And I do have some other ideas about the DVD papers- I can try asking movie rental places or libraries. And if anyone out there would like a copy of 101 Dalmations (minus the ads inside of course), let me know.
Our interview for the private autism school was very good. As advised, I really tried to listen to my gut throughout. And I got a good vibe. This spring I started a post (but never finished it) about a new private autism school that I visited in my quest for a summer placement for Henry. I was near hysterical by the time the tour ended. You could say my gut didn't like the place.
Because of that experience, my expectations for this more established school were heightened. I was told when we scheduled the interview that they would be getting to know Henry, we would be getting to know the school at this time, and then I would be contacted later on with their decision. But the administrator who met with us told me after about 20 minutes that she thought Henry would be just right for the position available, and she would reserve it for us. (I attribute this not only to my son's charm, but also to this woman's soft heart. She told me that she's only allowed to do a certain number of intake interviews, because she has such a hard time turning anyone away.)
My head is spinning. The place where we interviewed was the high school location (a former athletic club). The elementary school is several miles away, in a former day care center, and we have scheduled a tour there later this week. I mean, I can't just sign my kid up without visiting the school!
If you're interested in knowing more about the school, e-mail me privately. In brief, they have around 300 students in preschool through 12, and actually have some graduates who are remaining to take community college classes. Henry would initially be placed in an "intensive educational and social classroom" with the aim of being quickly integrated with the peer models.
After we briefly discussed Henry's strengths and weaknesses, Dr. M told me that they would be likely to work closely with Henry to determine why he has such a deficit with math, but also would encourage his reading strength "focusing on his interests", to see how far he could take this ability. "Maybe he could help in the library" is another idea she tossed out, which just about made me melt out of my chair.
We stopped over at the elementary location, just to see where it was and to schedule a tour. Things were chaotic, as it was pick-up time for the summer program. But I kind of liked that. I saw lots of affectionate, smiling teachers, smiling kids, smiling parents. Kind of like any other school, but with a bit more oversight. And as we were getting back into the car, a young woman driving by smiled and waved. It was the same teacher I had met at gymnastics, back when I started thinking about this school again. I haven't seen her since, but she remembered us. Seemed like a good sign.
Assuming we don't think of any reason why we shouldn't grab this opportunity, my next step is to contact the special ed director for our district and basically ask her if they will pay for Henry to attend this school. Dr. M thought they might, because she thinks it's actually cheaper for them than the county program he is now placed in. But if they don't, we will have other options.
Now I guess I was riding some kind of uber-autism-mom wave after the interview, and took both boys to Toys R Us. After exhaustive consideration, Thomas picked out a Batmobile. Henry picked out a 101 Dalmations DVD, which we already have. He's been talking about it for weeks, ever since he lost the papers that were in the first copy.
I've been trying to use logic with him, which is, of course, useless. "Henry, I really don't want to spend $20 for a DVD we already have, just so you can get the papers inside."
His response? "It doesn't cost $20."
Um, actually it does.
I'm not usually one to ask for special treatment because my son is autistic. But today I decided to give it a shot. I went up to the customer service counter, explained the situation, and asked if there was any way we could open up a dvd, take out the papers, and they could, like, wrap it back up and still sell it. A manager was called over, who listened politely, but answered in the negative.
So I bought Henry another copy of 101 Dalmations. And now I'm pissed. I'm pissed because if I were Jenny McCarthy and had a million dollars, I would just buy my kid whatever he wanted to satisfy his perseveration.
But, if I were Jenny McCarthy and went on Larry King and talked about how my son loves the papers from inside DVDs, every yahoo in America would pack up their DVD papers and send them to me.
So, that's why today had a little bit of bad in it, but mostly good :-)
And I do have some other ideas about the DVD papers- I can try asking movie rental places or libraries. And if anyone out there would like a copy of 101 Dalmations (minus the ads inside of course), let me know.
Friday, April 13, 2007
happy with the world I have, thanks.
I generally avoid political discussions- especially the politics of autism. And I'm a little late to the game with this one- Kristina, for one, discussed it here, and Mamaroo, for another, here. But in case anyone else hasn't seen this video yet, I thought I would throw it out there. I'm not savvy enough to actually post the movie on this site, but you can click here to get to it. It's created by/for Autism Speaks.
A link was forwarded to me by my mom. She received it from one of her friends. And I felt like I should register my feelings about it.
I love the images used and the way autistic children are shown to be the beautiful people they truly are. We see laughter and affection and joy. I would like more of the general public to see pictures like these when they are exposed to autism.
The images are interspersed with statements- some of which I think all of us would agree with- to answer the question in the song's title: What Kind of World do You Want?
-"A world in which a mom can hear her autistic child say I love you." (This one made me smile and think of one friend in particular. Go Oliver!)
-"A world that doesn't judge an individual with autism."
I take issue, however, with a couple of the phrases, which seem to directly contradict the happy families seen in the video, as well as the statements above:
-"A world where no family has to live with autism"
-"Autism Speaks wants a world where autism is a word in the history books"
This point has been made more eloquently by many others before me, but if we wish autism away, aren't we wishing our kids away? The same gorgeous faces that are featured in this little video? How can we want the world to "not judge an individual with autism", but at the same time wish it would go away?
I find myself thinking "yes, I wish Henry didn't argue so much and I wish he would be more willing to try new things and I wish he could be more comfortable with his emotions."
But I also wish Thomas wouldn't have such anxiety over which superhero outfit he is going to wear, and wish he would stop jumping off the couch, and I wish he wouldn't cry about having to wear shorts in the wintertime.
Take away the difficult aspects of a kid's personality and what are you left with? It's not reality.
And I hate to think what an autistic individual would think, upon reading "I want a world where no family has to live with autism."
It's easy for me to say, speaking for myself only, because Henry is "mildly" affected by autism. He doesn't injure himself and he is able to speak to me, although it is far from easy and has been a long road. My comfort level with autism has grown over the years, and Henry's abilities have grown as well.
I guess I'll end up being wishy-washy and saying I can agree with bits of what Kristina and Mamaroo each said. I would love to take away Henry's anxiety, and be more confident that he'll be able to keep himself safe. But I have no interest in changing who he is. He waves his hands and kicks his legs to express his excitement. He hums and smiles to himself and repeats favorite lines from movies (tonight I was the object of "you little fool.") Those are all traits of autism, and they are traits of Henry. It's a package deal.
I wish that autism organizations would spend more energy/resources promoting research into assisting people with autism (focusing on the first two goals- the ones I agreed with), and less energy/resources worrying about ridding the world of autism. It may just be quibbling over semantics, but during Autism Awareness Month, when the aim is to educate the general public about autism, the words we use are vitally important.
Just another mom's 2 cents.
A link was forwarded to me by my mom. She received it from one of her friends. And I felt like I should register my feelings about it.
I love the images used and the way autistic children are shown to be the beautiful people they truly are. We see laughter and affection and joy. I would like more of the general public to see pictures like these when they are exposed to autism.
The images are interspersed with statements- some of which I think all of us would agree with- to answer the question in the song's title: What Kind of World do You Want?
-"A world in which a mom can hear her autistic child say I love you." (This one made me smile and think of one friend in particular. Go Oliver!)
-"A world that doesn't judge an individual with autism."
I take issue, however, with a couple of the phrases, which seem to directly contradict the happy families seen in the video, as well as the statements above:
-"A world where no family has to live with autism"
-"Autism Speaks wants a world where autism is a word in the history books"
This point has been made more eloquently by many others before me, but if we wish autism away, aren't we wishing our kids away? The same gorgeous faces that are featured in this little video? How can we want the world to "not judge an individual with autism", but at the same time wish it would go away?
I find myself thinking "yes, I wish Henry didn't argue so much and I wish he would be more willing to try new things and I wish he could be more comfortable with his emotions."
But I also wish Thomas wouldn't have such anxiety over which superhero outfit he is going to wear, and wish he would stop jumping off the couch, and I wish he wouldn't cry about having to wear shorts in the wintertime.
Take away the difficult aspects of a kid's personality and what are you left with? It's not reality.
And I hate to think what an autistic individual would think, upon reading "I want a world where no family has to live with autism."
It's easy for me to say, speaking for myself only, because Henry is "mildly" affected by autism. He doesn't injure himself and he is able to speak to me, although it is far from easy and has been a long road. My comfort level with autism has grown over the years, and Henry's abilities have grown as well.
I guess I'll end up being wishy-washy and saying I can agree with bits of what Kristina and Mamaroo each said. I would love to take away Henry's anxiety, and be more confident that he'll be able to keep himself safe. But I have no interest in changing who he is. He waves his hands and kicks his legs to express his excitement. He hums and smiles to himself and repeats favorite lines from movies (tonight I was the object of "you little fool.") Those are all traits of autism, and they are traits of Henry. It's a package deal.
I wish that autism organizations would spend more energy/resources promoting research into assisting people with autism (focusing on the first two goals- the ones I agreed with), and less energy/resources worrying about ridding the world of autism. It may just be quibbling over semantics, but during Autism Awareness Month, when the aim is to educate the general public about autism, the words we use are vitally important.
Just another mom's 2 cents.
Friday, June 16, 2006
maybe I'm just a scrooge
They did a feature during the NBA game last night about Jason McElwain, the autistic kid who is usually a team manager, but got put in the game and scored 20 points in 3 minutes. I was as touched as anyone when I first heard that story. And I still get chills and tears in my eyes when I read about it. But yet there's also a little part of me who is becoming irritated by all the attention the media is giving this story.
I am trying to put my finger on why this bugs me. I think it's because, while this is bringing great public attention to the face of autism, what autism is and what it isn't, I'm starting to get the urge to shout "Jason is an awesome kid! So is my kid! So is every other child with autism! They achieve great things every day! More important things than scoring baskets!" The message should not be that Jason is some fluke autistic kid who achieved something, and so is to be celebrated. The message should be that all our kids have abilities to do all kinds of different things, if given the chance. And I'm worried that this message is getting missed.
I am trying to put my finger on why this bugs me. I think it's because, while this is bringing great public attention to the face of autism, what autism is and what it isn't, I'm starting to get the urge to shout "Jason is an awesome kid! So is my kid! So is every other child with autism! They achieve great things every day! More important things than scoring baskets!" The message should not be that Jason is some fluke autistic kid who achieved something, and so is to be celebrated. The message should be that all our kids have abilities to do all kinds of different things, if given the chance. And I'm worried that this message is getting missed.
Tuesday, June 06, 2006
it's love, stupid
“We hold these truths to be self evident: that all men are created equal; that they are endowed by their Creator with certain inalienable rights; that among these are life, liberty, and the pursuit of happiness”-The Declaration of Independence
I don't usually venture into hot political topics here, but this really has me steamed. I am a partner in a traditional, opposite-sex, marriage, and I really don't see what all the fuss is about. I do not feel threatened by people of the same sex who choose to marry. Am I missing something? Are they taking something from the rest of us? Getting some kind of privilege that the rest of us aren't? (Like a big tax break or a government contract?)
I have two younger brothers. They are both smart, sweet, clever, sensitive, creative, talented, funny and breath-takingly handsome. Each one shares his home and his life with a special person that he cares about. Neither one is married. One lives here in the US with a woman. The other lives in Australia with a man.
How many people in this world go through life trying to find someone to love and who will love them in return? I know I sound like a bleeding-heart sap, but why do we care who an adult decides to spend his or her life with? As long as no one is being hurt, I say our society needs all the love it can get.
Homosexuals are our co-workers, our friends, our family. They are members of our churches (yes, there is a gay couple who attends my church) and parents to our children's friends. Allow them to become even better members of society by acknowledging their relationship. Who does it hurt?
Or how many more wonderful Americans will we lose to Australia? :-)
I don't usually venture into hot political topics here, but this really has me steamed. I am a partner in a traditional, opposite-sex, marriage, and I really don't see what all the fuss is about. I do not feel threatened by people of the same sex who choose to marry. Am I missing something? Are they taking something from the rest of us? Getting some kind of privilege that the rest of us aren't? (Like a big tax break or a government contract?)
I have two younger brothers. They are both smart, sweet, clever, sensitive, creative, talented, funny and breath-takingly handsome. Each one shares his home and his life with a special person that he cares about. Neither one is married. One lives here in the US with a woman. The other lives in Australia with a man.
How many people in this world go through life trying to find someone to love and who will love them in return? I know I sound like a bleeding-heart sap, but why do we care who an adult decides to spend his or her life with? As long as no one is being hurt, I say our society needs all the love it can get.
Homosexuals are our co-workers, our friends, our family. They are members of our churches (yes, there is a gay couple who attends my church) and parents to our children's friends. Allow them to become even better members of society by acknowledging their relationship. Who does it hurt?
Or how many more wonderful Americans will we lose to Australia? :-)
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