Breaking out my best Leia impression and mustering up my calmest, least snarkiest, most empowering, annoyed, sarcastic tone for this post. Carrie Fisher take the wheel...
I came across this article this morning.... And usually I swipe on by because, frankly, unless it's a fellow mom - I don't much care. Most blurbs about autism are full of stats that came in the disheveled, half torn, half chewed, droll covered, wine soaked, and smeared "handbook" that comes with a new diagnosis. Some are all about miracle cures up to and including bleach cocktails. Many are, indirectly, stating that death from some horrible disease is a more fortunate fate than the "disorder" that my child lives with on a daily basis. And the damned comments. Cripes, people. What THE ACTUAL FUCK is wrong with those people?
This morning I was feeling froggy. It was a local article doing some Q&A with some new therapist with some new practice touting its success with bridging gaps between ASD kids and educators.
She's the Autism Whisperer.
We are saved.
Maaaaaybe I'm cynical. Maaaaaybe this isn't the week. I'm frustrated with our school system, again. Maybe I'm pissed off that some dillhole community group page leader deleted my query looking for other kids that share the same interests as my son because she doesn't know how to read. Maybe it's all the things. All of them. Maybe.
But she uses the most cringeworthy line I can think of - "We have hope."
Are you fuuuuuuuuuucking serious? "Hope". We have "hope".
What does that mean exactly?
We ran out of cheese, milk, bread, eggs, and peanut butter - but we have "HOPE!"
Congratulations, Spectrum Families - WE HAVE HOPE!!! HOPE HAS ARRIVED AND JUST IN THE NICK OF TIME!
Rejoice!
Plenty of hope to go around! Form a line!
As if "Hope" has arms and legs, a pulse, shoulder length hair pulled back in a conservative, low bun, tortoise shell glasses, sensible shoes, and wears just the right amount of perfume. She has her arms crossed and sleeves up and she's ready to kick some ass and take some names.
This is what people say that don't know what else to say.
This irritates me. Obviously.
No shit we have hope.
Thanks lady.
I hope to win the lottery but that doesn't pay my bills.
That sounds dismal. That sounds like everything else has failed and this is all that we have left. Our Hope™.
Come back when you have Solutions.
Not solutions to the Autism puzzle but solutions to help make their lives the way they want them. Encourage independence when possible. Connect those in need with resources. Help us advocate for our children. Educate the public. Foster compassion.
And for all that is good and holy in this world can we just get through a school year without having to ask a teacher to read the IEP? Maybe attend a party where we aren't a sideshow? Kid first, Autism second. Please?
Keep the hope for World Peace, that the Kardashian's will quietly retire to some remote island with no social media, and maybe fat free cheesecake that tastes just like the real thing.
Showing posts with label rainbow. Show all posts
Showing posts with label rainbow. Show all posts
Monday, July 27, 2015
Monday, September 29, 2014
The Rainbow Connection
So here we are, almost a year later, riding the waves of ROYGBIV. And what a roller coaster it's been. In some ways this is a vent session. In some ways this is a pity party. In some way it's meant to inspire. I don't know. I just watched a few episodes of Parenthood at the behest of some co-workers and there's so much that I feel like I'm going to have my own meltdown.
First - what is that like? That moment when there were 2 parents sitting there, in a therapists office, holding hands supportively as they absorb the news that their child has Asperger's. WHAT IS THAT LIKE? You mean to tell me that there are families out there where that actually happens? Lemme get this straight - not everyone sits there alone to hear the news, goes home to handle the symptoms of it alone, holds their child down from a fit of self abuse alone, goes to every therapy session alone, meets with IEP teams alone, bears the stares alone, and otherwise handles every single ASD related issue alone? Really? What's that like? I've had good friends complement my strength. I've had family offer to correct his behavior for me. I've had people listen to me vent. But not one person has ever held my hand and reassured me that I can get him through this. And only recently has this even mattered to me. Sometimes, my knees start to shake and I second guess whether or not I can handle it even though I *know* I can handle it. And these teachers! Okay, this one teacher. She feels the need to win out over an 11 year old with Autism in a power struggle. I worry about this alone. Sure, I get those comforting "awww" sounds or "WOW's". And no one knows what to say and I don't know what I want to hear but for like 11 minutes I would love it if I didn't feel like the Autism world was on my shoulders. Or the support system where I didn't have to choose between The Middle Son's therapy or The Youngest Boy's soccer practice.
Every time I have to take part of my day off of work to handle one of these issues I get to feel like shit. Like I'm judged for taking time off to go play. There are days where I'd GLADLY trade places. I want to scream and ask what the hell they are so jealous of - a special needs kid? Being a single mother? Being the single mom of a special needs kid? WTF? I'd rather be at work. Sometimes I'd rather my child get through life without additional obstacles of a processing disorder. I can't imagine what would drive people to get upset at me for taking care of my child. My children are my reason for working. Not whoever is on the other side of the cubicle or whose wallet I'm bulking. How do I get picked out of the group to be the scapegoat for why time off has to be approved?
And Class Dojo can so totally go eff off. Every single day there are these reminders that his math teacher doesn't understand Autism. I've offered educational materials to aid the teachers in their understanding of the fundamentals of ASD. And I sit there, corrected, while I listen to a table full of people give me a laundry list of the kids they know that have ADD or ADHD. Part of me remains calm because I know it's the only thing that they have to relate The Middle Son to in their heads. Part of me wants to hit them because there is very little to nothing that connects Attention Deficit to the Spectrum. We all have struggles whether are kids are NT or ADD or ASD. But we do have to recognize that each is an individual beast. Then I hear how disorganized he is because he doesn't fit the cookie cutter kid mold. Then he's unprepared because he has the short term memory of Dory the fish. GOD FORBID they allow him to return to the previous classroom to retrieve materials because then the whole class would want to do it. I'm so tired of the pressure of getting all "green" today. The Middle Son couldn't really care less and it's really his feelings that matter but it's so difficult to keep that in mind. When the "1" lights up on the Dojo app - I know it's The Middle Son and I know it's because he didn't do his homework or didn't want to staple a paper or is disorganized or is unprepared. I want to cry. I know my child is different. He's 11. I think I've caught on. And I want to have the teacher's back but I really would prefer to scream. He's not going to change. All the Thumbs Up and Thumbs Down in the world will not make that any different. That new "-1" isn't going to be the miracle. So stop, please. Just stop. This is the equivalent of a "-1" to a wheel chair bound child for still not running the track today. And tomorrow. And Wednesday.
It's really all okay because at the end of the frustrating days where my heart hurts there's an occasional "I love you, Mom" and "I'm glad that I have you" and a "You're the best mom ever". And all of those things are so much easier to bear and I'm reminded of the importance of what I do and I'm blessed enough to get those accolades all to myself.
First - what is that like? That moment when there were 2 parents sitting there, in a therapists office, holding hands supportively as they absorb the news that their child has Asperger's. WHAT IS THAT LIKE? You mean to tell me that there are families out there where that actually happens? Lemme get this straight - not everyone sits there alone to hear the news, goes home to handle the symptoms of it alone, holds their child down from a fit of self abuse alone, goes to every therapy session alone, meets with IEP teams alone, bears the stares alone, and otherwise handles every single ASD related issue alone? Really? What's that like? I've had good friends complement my strength. I've had family offer to correct his behavior for me. I've had people listen to me vent. But not one person has ever held my hand and reassured me that I can get him through this. And only recently has this even mattered to me. Sometimes, my knees start to shake and I second guess whether or not I can handle it even though I *know* I can handle it. And these teachers! Okay, this one teacher. She feels the need to win out over an 11 year old with Autism in a power struggle. I worry about this alone. Sure, I get those comforting "awww" sounds or "WOW's". And no one knows what to say and I don't know what I want to hear but for like 11 minutes I would love it if I didn't feel like the Autism world was on my shoulders. Or the support system where I didn't have to choose between The Middle Son's therapy or The Youngest Boy's soccer practice.
Every time I have to take part of my day off of work to handle one of these issues I get to feel like shit. Like I'm judged for taking time off to go play. There are days where I'd GLADLY trade places. I want to scream and ask what the hell they are so jealous of - a special needs kid? Being a single mother? Being the single mom of a special needs kid? WTF? I'd rather be at work. Sometimes I'd rather my child get through life without additional obstacles of a processing disorder. I can't imagine what would drive people to get upset at me for taking care of my child. My children are my reason for working. Not whoever is on the other side of the cubicle or whose wallet I'm bulking. How do I get picked out of the group to be the scapegoat for why time off has to be approved?
And Class Dojo can so totally go eff off. Every single day there are these reminders that his math teacher doesn't understand Autism. I've offered educational materials to aid the teachers in their understanding of the fundamentals of ASD. And I sit there, corrected, while I listen to a table full of people give me a laundry list of the kids they know that have ADD or ADHD. Part of me remains calm because I know it's the only thing that they have to relate The Middle Son to in their heads. Part of me wants to hit them because there is very little to nothing that connects Attention Deficit to the Spectrum. We all have struggles whether are kids are NT or ADD or ASD. But we do have to recognize that each is an individual beast. Then I hear how disorganized he is because he doesn't fit the cookie cutter kid mold. Then he's unprepared because he has the short term memory of Dory the fish. GOD FORBID they allow him to return to the previous classroom to retrieve materials because then the whole class would want to do it. I'm so tired of the pressure of getting all "green" today. The Middle Son couldn't really care less and it's really his feelings that matter but it's so difficult to keep that in mind. When the "1" lights up on the Dojo app - I know it's The Middle Son and I know it's because he didn't do his homework or didn't want to staple a paper or is disorganized or is unprepared. I want to cry. I know my child is different. He's 11. I think I've caught on. And I want to have the teacher's back but I really would prefer to scream. He's not going to change. All the Thumbs Up and Thumbs Down in the world will not make that any different. That new "-1" isn't going to be the miracle. So stop, please. Just stop. This is the equivalent of a "-1" to a wheel chair bound child for still not running the track today. And tomorrow. And Wednesday.
It's really all okay because at the end of the frustrating days where my heart hurts there's an occasional "I love you, Mom" and "I'm glad that I have you" and a "You're the best mom ever". And all of those things are so much easier to bear and I'm reminded of the importance of what I do and I'm blessed enough to get those accolades all to myself.
Friday, December 27, 2013
Somewhere Over the Rainbow
A little over a year ago, I began to have some serious concerns about my, then, 9 year old son. I butted heads with his teachers and eventually removed him from his conventional brick and mortar school. He was not thriving in any way. My gifted little boy, who could read just about anything you put in front of him, was failing every subject. He couldn't make a friend to save his life. He was as blunt as a 2 x 4 to the back of the head. He was drowning and it was the only thing I could think of to help him.
Within months of attending an online school, his teacher made a very difficult phone call to me. She was concerned that there was something much deeper going on. She offered to help me get him on the right track and suggested we consult his physician. His doctor is the most amazing woman, so easy to talk to. She reminded me of a similar conversation that we'd had about 2 years ago. He has issues with effective social skills. She asked me to follow up with her if that didn't remedy itself. At this point, she asked me to complete an assessment and return it to her. His teacher filled one out also. Rather than scheduling a follow up appointment, his doctor called me to refer us to the local Children's Hospital to help pinpoint what was going on. She immediately dismissed ADD or ADHD.
A few weeks went by before I heard from the referral nurse. And when I did, she proffered up a word that I wasn't anticipating: "Autism". But, he can talk and function. Isn't Autism where they are low functioning? I've met a few Autistics here and there and The Middle Son is really nothing like them. Not that he's "better" or anything. Just not what *I* thought of when I thought of Autism. She explained to me, very lightly, what "Asperger's Syndrome" is. High functioning Autism. She recommended we get to a therapist quickly. The earlier the diagnosis, the better. He's NINE. How is this just now on the table? He's worked with a therapist before, shouldn't this have been caught by now? Surely, he is not Autistic. I have to say, I was reeling. Confused, scared, shocked, worried, speechless, curious. I think I even laughed a little. But, we got appointments scheduled. Then we hung up. 15 minutes ago, life was totally different.
I began to research. And research some more. And then, there was some more. The more I read, the more I cried. Pretty sure that I sat here, for hours, with tears streaming down my face. Not tears of sadness. Relief. Realizations. MY KID ISN'T AN ASSHOLE! (Every Aspie parent has that initial fear that their child is just a jerk, at some point in the diagnostic process) Suddenly, 9 years all made perfect sense. These signs have been there for so long. But they got buried. Divorce, moving, anxiety about schools, 2 more siblings. We just kind of thought he was having adjustment issues. Well, no shit.
He has a wonderful therapist. She's fun, sharp as a tack, and relates to him. She doesn't dilute his therapy. Initially, we didn't mention the "A" word. Then, he hacked Disney's gaming site. Here he is, at 10, developing and creating video games. Learning some programming code. Taking to it like a duck to water. But ask the kid to tie his shoes. He can give you a detailed history of Godzilla. When I say "detailed" I mean EVERYTHING. A few weeks ago, I filled out another set of forms. If I had doubts about his diagnosis - I didn't after that. 28/30 spaces checked in the affirmative. Absurdly high vocabulary. Has anxiety walking down certain types of stairs. Can't stand denim jeans. Has no understanding whatsoever of the concept of other people's feelings. There's no filter on what comes out of his mouth. He can smell what neighbors 2 streets over are cooking. Things taste very strong. Sounds are really loud. Lights can be very bright. When that all gets to be too much - the punching ensues. Not directed at me or anyone else. Just himself.
So, just before Christmas, we got the official Welcome Kit to the world of Autism Spectrum Disorder. What a difference a year can make. All of a sudden, I want to make this place more understanding for him. But there's a balance I haven't quite figured out yet. He can't go through life thinking that he can just drift without consequence. Armed with an official diagnosis, I placed him back in a public school. We will see how it goes.
One day, my son was an average boy, on an average street, doing average things. The next day, he's Autistic. It knocks you back a few ticks. Thinking back to all the things you punished him for that were his condition breaking the surface. This is probably where having a schizophrenic biological mother comes in handy. She can't ever shut off her hallucinations, her eccentricities, or her symptoms. She is no more responsible for her conversations with the Planter's Peanut Guy than I am. That's something I learned a loooooooooooong time ago. Maybe it was a way to prepare me for raising an Aspie. I don't get offended anymore when he looks through me when I'm being emotional. I'm a lot more patient when he needs a few extra minutes to make it down the steps. He has taught me a lot about life in the last year. Slightly scared/nervous/excited/proud to see where it goes from here.
Within months of attending an online school, his teacher made a very difficult phone call to me. She was concerned that there was something much deeper going on. She offered to help me get him on the right track and suggested we consult his physician. His doctor is the most amazing woman, so easy to talk to. She reminded me of a similar conversation that we'd had about 2 years ago. He has issues with effective social skills. She asked me to follow up with her if that didn't remedy itself. At this point, she asked me to complete an assessment and return it to her. His teacher filled one out also. Rather than scheduling a follow up appointment, his doctor called me to refer us to the local Children's Hospital to help pinpoint what was going on. She immediately dismissed ADD or ADHD.
A few weeks went by before I heard from the referral nurse. And when I did, she proffered up a word that I wasn't anticipating: "Autism". But, he can talk and function. Isn't Autism where they are low functioning? I've met a few Autistics here and there and The Middle Son is really nothing like them. Not that he's "better" or anything. Just not what *I* thought of when I thought of Autism. She explained to me, very lightly, what "Asperger's Syndrome" is. High functioning Autism. She recommended we get to a therapist quickly. The earlier the diagnosis, the better. He's NINE. How is this just now on the table? He's worked with a therapist before, shouldn't this have been caught by now? Surely, he is not Autistic. I have to say, I was reeling. Confused, scared, shocked, worried, speechless, curious. I think I even laughed a little. But, we got appointments scheduled. Then we hung up. 15 minutes ago, life was totally different.
I began to research. And research some more. And then, there was some more. The more I read, the more I cried. Pretty sure that I sat here, for hours, with tears streaming down my face. Not tears of sadness. Relief. Realizations. MY KID ISN'T AN ASSHOLE! (Every Aspie parent has that initial fear that their child is just a jerk, at some point in the diagnostic process) Suddenly, 9 years all made perfect sense. These signs have been there for so long. But they got buried. Divorce, moving, anxiety about schools, 2 more siblings. We just kind of thought he was having adjustment issues. Well, no shit.
He has a wonderful therapist. She's fun, sharp as a tack, and relates to him. She doesn't dilute his therapy. Initially, we didn't mention the "A" word. Then, he hacked Disney's gaming site. Here he is, at 10, developing and creating video games. Learning some programming code. Taking to it like a duck to water. But ask the kid to tie his shoes. He can give you a detailed history of Godzilla. When I say "detailed" I mean EVERYTHING. A few weeks ago, I filled out another set of forms. If I had doubts about his diagnosis - I didn't after that. 28/30 spaces checked in the affirmative. Absurdly high vocabulary. Has anxiety walking down certain types of stairs. Can't stand denim jeans. Has no understanding whatsoever of the concept of other people's feelings. There's no filter on what comes out of his mouth. He can smell what neighbors 2 streets over are cooking. Things taste very strong. Sounds are really loud. Lights can be very bright. When that all gets to be too much - the punching ensues. Not directed at me or anyone else. Just himself.
So, just before Christmas, we got the official Welcome Kit to the world of Autism Spectrum Disorder. What a difference a year can make. All of a sudden, I want to make this place more understanding for him. But there's a balance I haven't quite figured out yet. He can't go through life thinking that he can just drift without consequence. Armed with an official diagnosis, I placed him back in a public school. We will see how it goes.
One day, my son was an average boy, on an average street, doing average things. The next day, he's Autistic. It knocks you back a few ticks. Thinking back to all the things you punished him for that were his condition breaking the surface. This is probably where having a schizophrenic biological mother comes in handy. She can't ever shut off her hallucinations, her eccentricities, or her symptoms. She is no more responsible for her conversations with the Planter's Peanut Guy than I am. That's something I learned a loooooooooooong time ago. Maybe it was a way to prepare me for raising an Aspie. I don't get offended anymore when he looks through me when I'm being emotional. I'm a lot more patient when he needs a few extra minutes to make it down the steps. He has taught me a lot about life in the last year. Slightly scared/nervous/excited/proud to see where it goes from here.
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