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I want off!
I know several of my readers have kids with learning differences and/or other disabilities. If they are lucky, they live in an area with excellent school resources and have a strong support system in place. Yet I guarantee they still want off the ride some times.
There is nothing more frustrating, time consuming and emotionally and physically exhausting than fighting for your kid's education ... for years. I got on this ride when Cam was six and he was first diagnosed with Asperger's Syndrome. Cam will be fourteen in two weeks and I am no closer to "solving" any of this than I was eight years ago. I understand it better - I think - but that hasn't translated into Cam thriving at this point.
I thought adding a parent advocate to the mix might be the answer, and although it helped, the advocate is so overworked and trying to advocate for so many parents (that speaks volumes to the special education program in my school district) that I'm afraid her presence is really nothing more than superficial.
I learned yesterday that the Special Education Supervisor who has overseen every IEP meeting Cam has had since we moved to Podunk had never bothered to pull Cam's educational file to see what the history of his needs was. She had no idea that Cam has an Asperger's diagnosis. She was basing her recommendations for Cam's education on very limited information and a lot of teacher opinion. It's not surprising the decisions being made have had less than a positive impact.
Today, we start a new process ... again ... kind of.
Although Cam has been evaluated by two different psychiatrists (the one who initially diagnosed the Asperger's at age six and one who added ADHD to the mix two years ago), we are muddling through the process again - this time with a neuropsychiatrist - a neuropsychiatrist who is the former Director for Autism Spectrum Disorder Services for Alexian Brothers Hospital - a neuropsychiatrist who has her own child on the autism spectrum.
I expect that Cam will be extremely resistant and uncooperative with this process, but I also know the neuropsychiatrist will not be judgmental about that - she'll expect it too. Cam doesn't want to be an "Aspie" or have ADHD - Cam just wants to be Cam - loved, accepted and appreciated for all that he is and all that he isn't. He wants to be just like everyone else and the prospect that he isn't is beyond difficult for him.
I am full of emotions. Anger - at the school and myself for not doing better for Cam. Fear - that I'll learn that I've been fooling myself for all of these years and that Cam's difficulties are the result of nothing more than my piss-poor parenting. Hope - that maybe, just maybe, we'll be able to nail down exactly what it is that is causing Cam such difficulties and make some progress.
When I called to make the appointment, the neuropsychiatrist asked what it was I was hoping to gain from this process. Was I looking for documentation that would force the school district to provide certain accommodations? Was I hoping to get the public school district to provide private school tuition for Cam's education? Did I need an expert witness for a legal proceeding?
I found those questions so odd. All that I want is to identify what it is that is keeping such a smart, creative, caring young man from being successful and appreciated for the smart, creative, caring young man that he is.
I want off!I know several of my readers have kids with learning differences and/or other disabilities. If they are lucky, they live in an area with excellent school resources and have a strong support system in place. Yet I guarantee they still want off the ride some times.
There is nothing more frustrating, time consuming and emotionally and physically exhausting than fighting for your kid's education ... for years. I got on this ride when Cam was six and he was first diagnosed with Asperger's Syndrome. Cam will be fourteen in two weeks and I am no closer to "solving" any of this than I was eight years ago. I understand it better - I think - but that hasn't translated into Cam thriving at this point.
I thought adding a parent advocate to the mix might be the answer, and although it helped, the advocate is so overworked and trying to advocate for so many parents (that speaks volumes to the special education program in my school district) that I'm afraid her presence is really nothing more than superficial.
I learned yesterday that the Special Education Supervisor who has overseen every IEP meeting Cam has had since we moved to Podunk had never bothered to pull Cam's educational file to see what the history of his needs was. She had no idea that Cam has an Asperger's diagnosis. She was basing her recommendations for Cam's education on very limited information and a lot of teacher opinion. It's not surprising the decisions being made have had less than a positive impact.
Today, we start a new process ... again ... kind of.
Although Cam has been evaluated by two different psychiatrists (the one who initially diagnosed the Asperger's at age six and one who added ADHD to the mix two years ago), we are muddling through the process again - this time with a neuropsychiatrist - a neuropsychiatrist who is the former Director for Autism Spectrum Disorder Services for Alexian Brothers Hospital - a neuropsychiatrist who has her own child on the autism spectrum.
I expect that Cam will be extremely resistant and uncooperative with this process, but I also know the neuropsychiatrist will not be judgmental about that - she'll expect it too. Cam doesn't want to be an "Aspie" or have ADHD - Cam just wants to be Cam - loved, accepted and appreciated for all that he is and all that he isn't. He wants to be just like everyone else and the prospect that he isn't is beyond difficult for him.
I am full of emotions. Anger - at the school and myself for not doing better for Cam. Fear - that I'll learn that I've been fooling myself for all of these years and that Cam's difficulties are the result of nothing more than my piss-poor parenting. Hope - that maybe, just maybe, we'll be able to nail down exactly what it is that is causing Cam such difficulties and make some progress.
When I called to make the appointment, the neuropsychiatrist asked what it was I was hoping to gain from this process. Was I looking for documentation that would force the school district to provide certain accommodations? Was I hoping to get the public school district to provide private school tuition for Cam's education? Did I need an expert witness for a legal proceeding?
I found those questions so odd. All that I want is to identify what it is that is keeping such a smart, creative, caring young man from being successful and appreciated for the smart, creative, caring young man that he is.
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11 comments:
I hope that the whole situation works out in the best possible way for Cam. Whatever that is the end reasult needs to be what is best for him.
I uunderstand that you just answers but the new neuropsych is coming from her own point of view. She understands that you want answers but she is looking at the end result, and I feel that is why she asked you those questions.
As a doctor, she understands that you want a diagnosis but on her end, the diagnosis must lead to a treatment or tangible result. Good Luck Dana. Cheers!!
I am glad you are getting things under control before Cam gets to high school. I think knowing what you want out of the evaluation is important to the evaluator to see what your expectations are. I bet the support that Cam gets at home has be just as important to Cam's development and potential as the support he gets at school.
Good luck!
I think Matt is correct in why the neuropsychiatrist asked the questions. Your answers allows them to know what you are in it for...you know there are parents they deal with who are only looking to make a buck off the school system..
Stay strong...you are doing what is correct for your son.
Doc, that is my goal ... of course I might be a basket case by the time we get answers, but at least Cam will be better off!
Matt-Man, I agree. I'm sure parents come to her for a myriad of reasons, not all necessarily as simple as finding out if there really is a problem and if there is, what do we do?
Unfortunately, there is no "treatment" (usually) for neurological issues, it becomes an issue of managing the difference in the best possible way ... unless you have a magic fairy dust you've been keeping from me!
Karen, at this point, there is very little support from the school, so lets hope I'm doing something right at home *wink*
As parents we do tend to blame ourselves for everything that goes wrong whether we feel we've done all we could or not. "What if I had done this.." What if I had tried that?" but the bottom line is you do what you have to do with the information and resources given to you and hope for the best. The fact that you are constantly seeking more answers says a lot about you.
Go NOW and buy "Look Me in the Eye" by John Elder Robison. It's by an Aspie and will take away some of your guilt. It is SO genetic. Poor parenting, which you haven't done anyway, is not even a remote part of Cam's issues. I am 100% sure of that.
Being such a great advocate for Cam and his health needs makes you a FABULOUS parent. So, stop beating yourself up there. :-) I hope you get some really great and insightful news that can help you navigate this road to help Cam.
Bond, oh, I know there are parents out there trying to get their kid a diagnosis so they can use the system. I'm sure she has run in to more than her share of those.
Christine, I really need to understand what is within Cam's control and what is not within Cam's control. Seems that understanding is the golden ticket.
Gina, I already own it, and have John Elder Robison's blog in my reader, and follow him on twitter! He's even left a couple of comments on this blog :) My guess is that I am likely the main contributor on the genetic side too, but not much I can do about that!
I think you've done the best you can with Cam and are trying to provide the best possible help for him. I think that Cam maybe doesn't want to "hear" what is going on with the Aspergers, autism, ADHD, etc but the assistance (in whatever form) is going to help him. I am presuming that Cam thinks that this is a bad thing but he needs to know that he's so gifted and shouldn't be ashamed of any of this.
Been there... the IEP I mean. It is sooooo ridiculous. I have had many an arguement with the schools about how they handle the IEP meetings, paperwork etc. They just seem more concerned with having official documents turned in in a timely manner then they do your childs actual education. They are mostly ill informed, and unconcerned. My childs IEP case manager has never even met him! She works at the school he attends!!! How can you identify the needs of a child you have never met. Keep fighting.
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