Please help sponsor a friend running in the Boston Marathon. You know the “run;” the arduous, 26-mile trek from Hopkinton to Boston…. Her goal is to raise $10,000 and will specifically support the Children’s Hospital Autism Language Program, a unique program focused on enhancing the communication of children with autism and improving their quality of life.
So far she has raised a little more than $3,000 and needs your help ... today!
Please spread the word about Christine Carlson (who is amazing, by the way). Please read more about Christine Carlson and her “Miles for Miracles” Boston Marathon run.
Here's more about the Autism Language Program (very interesting and necessary for kids with autism who cannot communicate verbally---like my daughter, and probably someone you know too!) : http://www.childrenshospital.org/clinicalservices/Site1850/mainpageS1850P0.html
Showing posts with label Children's Hospital. Show all posts
Showing posts with label Children's Hospital. Show all posts
Friday, April 3, 2009
Tuesday, December 30, 2008
I can't afford my autistic kids
Can someone please explain to me why Children's Hospital audiology (hearing, right?) cost me 500.00 for Meghan to have a hearing test? I really want to know. Is it because they are highly regarded professionals in the world of all things that hear? Or is it because Meghan is autistic and, therefore, costs more?... or is it because they want to rob me blind (and now I'll have to see one of their ophthalmologists, too) and since Meghan goes to these appointments with her school, hmmm ...
What's really interesting and has inspired me to open a bottle of wine and start gulping is that the first test was inconclusive and they want to do annooooooother teeessssst! Sure they do! At 500 bucks a pop, I would want Meghan to have another one too... and maybe a third, and a fourth... hell, why not have her visit every month!!! Or perhaps I just need to change my career? So what does it take to become certified in ringing some bells in various tones???
I'm hearing they rake in the dough!!
This is second to the "ten minute" neurologist at 800.00... Really, that actually happened! Is it me? Do people see me coming and then charge me 100 bucks a minute?? I don't charge 100 bucks a minute, do you?
Or is it that when doctors hear "autism," their price automatically triples ... Is autism just a secret code word for "goldmine?" I'm wondering as I'm getting ripped off.
Or maybe I'm not? You tell me?
What's really interesting and has inspired me to open a bottle of wine and start gulping is that the first test was inconclusive and they want to do annooooooother teeessssst! Sure they do! At 500 bucks a pop, I would want Meghan to have another one too... and maybe a third, and a fourth... hell, why not have her visit every month!!! Or perhaps I just need to change my career? So what does it take to become certified in ringing some bells in various tones???
I'm hearing they rake in the dough!!
This is second to the "ten minute" neurologist at 800.00... Really, that actually happened! Is it me? Do people see me coming and then charge me 100 bucks a minute?? I don't charge 100 bucks a minute, do you?
Or is it that when doctors hear "autism," their price automatically triples ... Is autism just a secret code word for "goldmine?" I'm wondering as I'm getting ripped off.
Or maybe I'm not? You tell me?
Tuesday, October 14, 2008
My Son's (Un) Just Beginnings
I’ve written about the day of my daughter’s diagnosis, so I thought it was only fitting to continue with the day of my son’s diagnosis, if you can bear it, because it was a bit different. It was just 6 months after my daughter’s autism diagnosis and one year after a speech therapist diagnosed him with PDD (Pervasive Developmental Delay) and the recommendation was: get him into a preschool program to develop his speech. Which we did by the age of 3; he was kicked out by 3.5. Oh, Boy!!!
Just shortly before his 4th birthday we had him evaluated at Children’s Hospital by a different group of doctors than we had for Meghan: pediatric pediatricians and psychologists. His diagnosis was grim, as far as I was concerned: MR (Mental Retardation).
As one can imagine, this diagnosis did not sit well with us, especially me. It was not the fact that he was diagnosed with a disorder, but PDD was what I was thinking. A much milder form of autism, but one that I could put my finger around and have it actually make sense for him. I think MR is just a label with no sense of recovery. Meaning that autism has therapies and hope, but, to me, MR sounded cold, hopeless, and hollow, like there’s nothing you can do—just love your boy, was really how we were treated. I just couldn’t understand what this diagnosis really meant, so I asked:
Me: “Does this mean that he can’t learn?”
Them: “No, of course he can learn.”
Me: “What do people with this diagnosis do for work?”
Them: “Well, a lot of ‘them’ work in wonderful places, like even here at the hospital.”
Me: “Like what, take out the trash?” (I was being sarcastic)
Them: “Yes, exactly, they mop the floor and take out the trash.” (she said, enthusiastically!)
Me: I felt physically sick “Can he learn math? Science? Reading?”
Them: “Yes.”
Me: “Algebra?”
Them: “Yes, of course.” (nervous laugh)
Me: “Then why??”
As if they had slapped me in the face and continued to punch me with every nervous word that was shaped and delivered while we sat gasping for air.
And given a box of Kleenex … but no hope.
I wasn’t giving them a hard time, I was just trying to figure it all out and, Yes, I was defensive. How can anyone label my son with no hope and a future no better than a trash man? (There’s nothing wrong with that profession, mind you, but I wanted my 4 years old to receive the benefit of the doubt and be presented with the same options that every other preschooler was given.) It was as if he was tried and convicted of a dismal future and he was only 4 years old. I wanted people to have higher expectations for him because we believed in him and this “label” just didn’t present us with any options, just a dead end and the color of gray.
Autism seemed to have hope at least, and proactive solutions: There were books and an entire therapy revolved around it (ABA), not to mention speech and language therapy; it was a process of learning and of recovery. It offered Hope.
I never went back to that hospital (as if it were their fault), and during the days following this diagnosis I told his special needs preschool teachers, speech therapist, pediatrician, friends and family what his diagnosis revealed. What I got was a pause and a “NO.” Not just a No, but a Nooo! “No, he’s not,” said every single one of them. Interesting. Our pediatrician even added, “No, he’s too smart, and I see it in the way he plays, it’s PDD, you’ll see, he’ll start to develop better language and even out,” he said.
Over the next 10 years and a few different pediatricians, lots of teachers, and one psychologist later, have all labeled Nick with a mild form of autism and we stuck with it. It makes sense for him based on what we’ve seen and how he tests; and the therapies work for him, like speech, OT, and social skills classes and have helped him develop, progress and see color, not gray.
Just shortly before his 4th birthday we had him evaluated at Children’s Hospital by a different group of doctors than we had for Meghan: pediatric pediatricians and psychologists. His diagnosis was grim, as far as I was concerned: MR (Mental Retardation).
As one can imagine, this diagnosis did not sit well with us, especially me. It was not the fact that he was diagnosed with a disorder, but PDD was what I was thinking. A much milder form of autism, but one that I could put my finger around and have it actually make sense for him. I think MR is just a label with no sense of recovery. Meaning that autism has therapies and hope, but, to me, MR sounded cold, hopeless, and hollow, like there’s nothing you can do—just love your boy, was really how we were treated. I just couldn’t understand what this diagnosis really meant, so I asked:
Me: “Does this mean that he can’t learn?”
Them: “No, of course he can learn.”
Me: “What do people with this diagnosis do for work?”
Them: “Well, a lot of ‘them’ work in wonderful places, like even here at the hospital.”
Me: “Like what, take out the trash?” (I was being sarcastic)
Them: “Yes, exactly, they mop the floor and take out the trash.” (she said, enthusiastically!)
Me: I felt physically sick “Can he learn math? Science? Reading?”
Them: “Yes.”
Me: “Algebra?”
Them: “Yes, of course.” (nervous laugh)
Me: “Then why??”
As if they had slapped me in the face and continued to punch me with every nervous word that was shaped and delivered while we sat gasping for air.
And given a box of Kleenex … but no hope.
I wasn’t giving them a hard time, I was just trying to figure it all out and, Yes, I was defensive. How can anyone label my son with no hope and a future no better than a trash man? (There’s nothing wrong with that profession, mind you, but I wanted my 4 years old to receive the benefit of the doubt and be presented with the same options that every other preschooler was given.) It was as if he was tried and convicted of a dismal future and he was only 4 years old. I wanted people to have higher expectations for him because we believed in him and this “label” just didn’t present us with any options, just a dead end and the color of gray.
Autism seemed to have hope at least, and proactive solutions: There were books and an entire therapy revolved around it (ABA), not to mention speech and language therapy; it was a process of learning and of recovery. It offered Hope.
I never went back to that hospital (as if it were their fault), and during the days following this diagnosis I told his special needs preschool teachers, speech therapist, pediatrician, friends and family what his diagnosis revealed. What I got was a pause and a “NO.” Not just a No, but a Nooo! “No, he’s not,” said every single one of them. Interesting. Our pediatrician even added, “No, he’s too smart, and I see it in the way he plays, it’s PDD, you’ll see, he’ll start to develop better language and even out,” he said.
Over the next 10 years and a few different pediatricians, lots of teachers, and one psychologist later, have all labeled Nick with a mild form of autism and we stuck with it. It makes sense for him based on what we’ve seen and how he tests; and the therapies work for him, like speech, OT, and social skills classes and have helped him develop, progress and see color, not gray.
Saturday, October 11, 2008
Getting Information from a Doctor (?): The Beginning of Our Journey
The Very Beginning:
When Meghan was diagnosed, we already kind of knew the results before the results were in. Meghan was not talking at all by the age of 2 and she would almost always turn a deaf ear when spoken to, and we originally thought “Deaf?” Until Barney came on the television and she shot across the house like a jackrabbit on speed to get to the TV. “Damn, she’s not deaf!” (I know, I know, how many moms wished that their kid was deaf—I just knew that it seemed better than autism.) We had read quite a bit about autism during this time and started working with her on the technique of Floortime. I remember the day as if it were just yesterday, I would be on the floor with her as she lined up her toys in a row and I, in turn, would disrupt this form of play of her perfectly placed toys and started playing with them “appropriately” while she watched. Then she would, again, try to move the toys back to her “lineup” and I would, again, play with them appropriately, smiling at her and watching … We would continue to do this for about 5 minutes until it became a game in itself, smiling and noticing that she would anticipate my next move. Ah, results.
The book is called The Child with Special Needs, by Stanley Greenspan; it helps a parent understand autism (special needs) and how to teach your autistic child through playful techniques like Floortime. It became my bible to reaching out to my daughter.
On the day of our evaluation appointment: a team of developmental doctors from Children’s Hospital in Boston, I was able to attend Meghan’s full evaluation process. I noticed that she couldn’t do some of the things that children her age should be able to do like “feeding” the baby doll instead of examining its eyes and flinging it across the room (oops). Two weeks later we were back for the results. Walking down the sterile corridor with the team of doctors leading the way as if walking to our executions, I could almost hear the drumming of doom echoing above us. We were told it was autism (as we already knew) but I still cried. Then they handed us a cheap, 3-cent, three fold pamphlet filled with more pictures of cute autistic children than information. In fact, I remember thinking that if I didn’t already know what this pamphlet was telling me about autism, then my kid was already screwed!! As an after-thought we mentioned what we were reading and learning about autism (so get a CLUE, you doctors, for Christ sake). They wrote down the information like a psychiatrist writing down the details of your psyche, a bit disconcerting and condescending, if you ask me. And then the inevitable “Good luck to you” followed with a “Thank you very much and, yes, have yourself a good day, too.”
Then off to a martini lunch! (Um, that would be me.)
The next time we saw this team for a reevaluation, some 6 months later, she was doing better … I was trying hard to suppress my nervous laugh while my body was visibly shaking as if watching my baby perform the test of her life, and watched as she fed the baby doll, among other things. I remember walking down the hall shortly after, chanting to myself: she fed the doll, she FED the doll … she stirred the imaginary food and she fed the GOD DAMN BABY DOLL! Ah, progress.
The doctors confirmed, yet again, what we had already known, that she was making progress so keep up with what we were doing: the ABA based class (that we had found), the home-based ABA program (that we enforced) and the Floortime (a book that we had researched and purchased). Oh, and before we left they kindly gave us reading suggestions: um, the books (listed verbatim) that we had mentioned to them 6 months earlier.
“Ooh,” they chuckled, as we reminded them, “I guess we can’t do anything more for you then, can we?”
We left with a queasy stomach and a bad taste in our mouth as we did our usual bid of “Good luck and have a nice day …”
“Oh … and here, take back your colorful pamphlet, would hate for you to run out.”
The point of this story is to not expect a doctor to help you and your child, you need to take the bull by its horns and help your own child. You are the best advocate for him/her so learn everything that there is to know … I promise, it will be rewarding.
When Meghan was diagnosed, we already kind of knew the results before the results were in. Meghan was not talking at all by the age of 2 and she would almost always turn a deaf ear when spoken to, and we originally thought “Deaf?” Until Barney came on the television and she shot across the house like a jackrabbit on speed to get to the TV. “Damn, she’s not deaf!” (I know, I know, how many moms wished that their kid was deaf—I just knew that it seemed better than autism.) We had read quite a bit about autism during this time and started working with her on the technique of Floortime. I remember the day as if it were just yesterday, I would be on the floor with her as she lined up her toys in a row and I, in turn, would disrupt this form of play of her perfectly placed toys and started playing with them “appropriately” while she watched. Then she would, again, try to move the toys back to her “lineup” and I would, again, play with them appropriately, smiling at her and watching … We would continue to do this for about 5 minutes until it became a game in itself, smiling and noticing that she would anticipate my next move. Ah, results.
The book is called The Child with Special Needs, by Stanley Greenspan; it helps a parent understand autism (special needs) and how to teach your autistic child through playful techniques like Floortime. It became my bible to reaching out to my daughter.
On the day of our evaluation appointment: a team of developmental doctors from Children’s Hospital in Boston, I was able to attend Meghan’s full evaluation process. I noticed that she couldn’t do some of the things that children her age should be able to do like “feeding” the baby doll instead of examining its eyes and flinging it across the room (oops). Two weeks later we were back for the results. Walking down the sterile corridor with the team of doctors leading the way as if walking to our executions, I could almost hear the drumming of doom echoing above us. We were told it was autism (as we already knew) but I still cried. Then they handed us a cheap, 3-cent, three fold pamphlet filled with more pictures of cute autistic children than information. In fact, I remember thinking that if I didn’t already know what this pamphlet was telling me about autism, then my kid was already screwed!! As an after-thought we mentioned what we were reading and learning about autism (so get a CLUE, you doctors, for Christ sake). They wrote down the information like a psychiatrist writing down the details of your psyche, a bit disconcerting and condescending, if you ask me. And then the inevitable “Good luck to you” followed with a “Thank you very much and, yes, have yourself a good day, too.”
Then off to a martini lunch! (Um, that would be me.)
The next time we saw this team for a reevaluation, some 6 months later, she was doing better … I was trying hard to suppress my nervous laugh while my body was visibly shaking as if watching my baby perform the test of her life, and watched as she fed the baby doll, among other things. I remember walking down the hall shortly after, chanting to myself: she fed the doll, she FED the doll … she stirred the imaginary food and she fed the GOD DAMN BABY DOLL! Ah, progress.
The doctors confirmed, yet again, what we had already known, that she was making progress so keep up with what we were doing: the ABA based class (that we had found), the home-based ABA program (that we enforced) and the Floortime (a book that we had researched and purchased). Oh, and before we left they kindly gave us reading suggestions: um, the books (listed verbatim) that we had mentioned to them 6 months earlier.
“Ooh,” they chuckled, as we reminded them, “I guess we can’t do anything more for you then, can we?”
We left with a queasy stomach and a bad taste in our mouth as we did our usual bid of “Good luck and have a nice day …”
“Oh … and here, take back your colorful pamphlet, would hate for you to run out.”
The point of this story is to not expect a doctor to help you and your child, you need to take the bull by its horns and help your own child. You are the best advocate for him/her so learn everything that there is to know … I promise, it will be rewarding.
Note: Let me hear your voice was another book that inspired me at the start of “our” journey:
http://www.booksamillion.com/ncom/books?pid=9780449906644
The Child with Special Needs by Greenspan http://search.barnesandnoble.com/booksearch/isbnInquiry.asp?r=1&ISBN=9780201407266&ourl=The%2DChild%2Dwith%2DSpecial%2DNeeds%2FStanley%2DI%2DGreenspan
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