This is a letter to Janet P. aka my psychologist. Last year, I sat on a panel of AS adults at her request. And, this year, I am asking her help in becoming more involved within my community. If you are trying to find a pulse, it is best to locate a heartbeat. She has been very active within and instrumental to the AS community for many years now. I am also reaching out to her on various ways to approach my one daughter's definite diagnosis and my other daughter's possible diagnosis. It has taken me weeks to get back to her after initially reaching out to her and then having her reach out in turn. I've been a bit busy. I've been a bit stressed. This is a quick recap with limited details of my last few months. A few names have been changed to protect the innocent and not-so-innocent and the hapless bystander.
Janet P.,
I am sorry it has taken so long to get back to you. It has been very hectic around here, at least for me. Cosine and Sine both received ADOS testing. My close friend, Aunt Flea, got me in touch with Bob G. -- a former colleague of hers. As I already knew, Sine tested on the spectrum, but even more towards straight up classic autism then I expected. Significantly over the cut-off in many areas. And, I guess because Sine's traits always seemed more glaring, Cosine's behavior always seemed more typical. But, she actually tested as being borderline. She did exhibit some traits-- misuse of pronouns, circular logic, atypical play patterns, lack of empathy, etc. However, Bob interpreted that Cosine is perhaps Asperger's if anything at all. I am not so concerned about her developmentally. Eventually, she may need some "sessions" prompting her in some areas. Intake at the Achievement Center didn't feel Cosine needed any intervention on their part-- but Sine is set up to have an evaluation with a psychologist for a diagnosis mid-month. I also got in touch with the IU5 for county, trying to get some early intervention started for these last few months of school. After their two hour observation and further testing, their plan with her is to work on things like eye contact, approaching others to play, and asking for help when needed. Basic things. However, they tend to lean more towards Asperger's. It still amazed me how little they seemed to know. Like, I heard them discussing, "Now, is it a SYNDROME or..." I felt like I could have answered more of their questions myself (think I am about half way through reading everything in print about autism-- HA)! And, how arbitrary the diagnosis seems depending on whom you are speaking with. They can only offer someone to be with Sine two times in the classroom a month. And, they told me it gets even harder to get services once the child is in kindergarten and is no longer considered early intervention. Once the Achievement Center does their diagnosis, they have offered in-home sessions. It would be working with my husband and me more so. Teaching us new approaches to help the girls-- mostly Sine. All in all, I am feeling good about what is happening thus far.
It almost seems like people are being overly cautious in their approach to the girls because of all the backlash about over-diagnosis and the possible changes to the DSM- V in the realm of autism spectrum disorders. Or maybe a lack of information on how AS manifests itself in girls and women.
The experience of the girls preschool teacher telling me, IN THE PARKING LOT IN FRONT OF THEM, that my daughters were not socially ready for kindergarten (but academically could skip kindergarten) AND that she would not recommend they move on was one of the most horrible things I have ever experienced. Not only did I tell her at the beginning of the year that we suspected possible Asperger's with Sine, but also that I was always available for any discussion, any time. We heard NOTHING all year long, except a small handful of times the girls were having trouble listening. Again, in the parking lot. And, other parents had been approached the same way, so I thought nothing of it. However, in spite of my anger and outrage, I have used the situation as a catalyst to finally address the suspicions I have had for years.
My husband has been having difficult with some of this. He is very reluctant to have our daughters LABELED. I tried to explain to him that I would rather the girls be "labeled" with autism now and receive the early intervention they need, then to be called a "loser", an "under-achiever", or a "disruptive student" later. I still remember the backs of many of my report cards. That said, my husband even made passing comment about MY baggage, but then tried to say those weren't the words he was looking for. I think he is afraid to answer any questions his family might have, people who still refer to an challenged or disabled person as "retarded". Or maybe just to admit our daughters aren't as perfect to everyone as they are to us. HOWEVER, he made it clear he will do anything necessary to help the girls and the family. But, still most of the weight of organizing all this has fallen on my shoulders.
I do not want to change the girls in any way, nor even put them in "special" classes. I want to give them the tools they need to be happy and successful in their lives. And, in addition to all that, I am trying to figure out what I need to do to enroll them in kindergarten. And, they started swim classes, and they are signed up for a nature summer camp at Asbury Woods, and they are still going to dance classes, and they are still going to story time at the library, and visiting the art museum and the children's museum and the environmental center... AHHHHHHH!
My new job is still a bit stressful. Again, it is just dealing with the people. The computer programs were understood in a day or two. The terminology? A week. I can handle the traumas, the open hearts, etc. The hours aren't the best, but I am used to 2nd shift. It is just the people, mostly the nurses. I really wish I could work in a cubicle, pushing numbers all day. That would make me happy. But, I am doing what I have to do for right now. Within a year, I will want different hours so I can spend evenings with my daughters when they are out of school.
And, I guess it is kinda big news. I was awarded a $1000 travel grant to attend the IMFAR conference in Toronto in mid-May. Here's a link: http://www.autism-insar.org/index.php?option=com_content&task=view&id=28&Itemid=79. It includes all travel expense like gas, hotel rooms, meals, and the cost of the convention itself. I had to write out a proposal (which is what I need to discuss with you) about what would qualify me, what I am currently doing, and what I plan to do after attending the conference. The line up looks amazing. I am interested in the children's aspect (more behavioral) because of the girls. And, for ME, I am interested in the neuropsychology and genetics. Lots of both. I booked a hotel room for three nights. I will be driving up with a friend who will not be attending. It is a little overwhelming-- especially since I will have to meet with people from the group itself, possibly be in photos, provide links to anything I am writing about the conference to be shared on their site, etc. All of that doesn't bother me as much as the potential for people bumping into me or touching me just increased about 1000 fold. And, I was hoping that being at a conference on autism would free me up a little to actually say things I know I shouldn't say to people like, "I am done listening to you now." Ha, just kidding.
Part of my proposal, which I will included a copy (so you can see what I am thinking), spoke to working with others in a supportive manner. I feel I would be most comfortable working with others on the spectrum. As a parent of a child(ren) on the spectrum, I know there are other support groups out there for PARENTS. But, I am concerned about kids having a place to go where they could ask questions they wouldn't feel comfortable asking teachers or parents. Especially girls! But, maybe even a group where women can discuss things together in a non-judgmental environment. I just recently read that three autistic MEN were appointed to Health and Human Services committee on autism, and I immediately though, "And, the woman???" The ratio is one in every four-- now maybe one in five. Where's our one? I know there are women writers who have already tackled many autism issues. But, one of my favorite authors died yesterday, and it is a reminder of how much I have wanted to write all my life-- if I could sit and quiet my brain long enough. I have tons of notes here and there (filled a couple suitcases even). I have been told I have amazing stories, but when the words move around your head like they are in a blender, it is daunting. I try to keep up on my blogging, mostly for my benefit probably. But, so much is happening these days, it is hard to find a moment to even sit still without dozing off. I would like to do something-- to help, I guess. I figured someone like yourself would be more clear on where the need is and how best to address it. Would you be willing to work on that with me? I would love to even share some of the stuff I see or learn at the conference afterward.
I have also looked into the neuropsychology and applied behavioral analysis programs at Mercyhurst. But, when I am already staring at a $425 a month student loan, I balk at the idea.
I have to admit that I am very stressed even though these are all positive things happening. Or just I am finding the positive in them. Typically, my stimming has increased monumentally over the last couple months. Lots of rocking and my finger muscles are getting a work out. Also, in my best efforts of escapism, I have realphabetized and recatalogued my entire vinyl collection over the last few weeks.
Well, I know this was a lot to read. Sorry about that. Please feel free to call me or let me know when I could call you.
Melissa
Saturday, March 31, 2012
Wednesday, March 7, 2012
Oxford's in a blender
Many, many things have been happening around here lately. Things I know I want to or need to write about in this blog. I'm still licking the fresh wound of a horrible experience with my daughters' teacher which finally got me in gear to get the girls ADOS testing and setting up appointments with early intervention before they start kindergarten. And, I finally started a new job after leaving my previous job (which makes well over 35 jobs now). Also, I have been thinking about some other sensory issues I want to share about my time here on the spectrum-- the noses knows.
All of these things have been writing themselves in my head for weeks now. In some ways that is a good thing, because I can pull sentences out of my head like a magician pulls a string of handkerchiefs out his mouth. But, it is bad in the way it becomes overwhelming when I am trying to prioritize. Setting up the appointments for the girls is more important than WRITING about how the girls responded to the psychologist. Trying to acclimate into the mini-society surrounding my new workplace is more important than WRITING about the subtle aspects I am trying to catch. Planning a trip to Toronto to attend an international autism research convention because I am thinking about going back to school (again!!!) is more important than WRITING about my hotel reservations. Get it? I finally do.
As I mentioned, these things are all writing themselves as they happen. As a friend told me once, "You write like you talk." That makes me a great essayist but not the best Southern Gothic fiction writer like Faulkner. Well, I guess if all my characters where Pennsylvanian women who came from the Great Lakes rust belt, I could sell a book or two.
I want you to imagine with me what the inside of my head looks like as these things form. First, take a decent-sized edition of a dictionary-- Oxford's will do. Now, put it through a shredder, being sure to save all the little bits. Next, take your every day average glass fish bowl and dump all the papers bits inside. ALL THE PAPER BITS! Make them fit however you can. Okay, we're almost done. Take the nozzle of a vacuum cleaner, turn the cleaner on reverse, and stick the nozzle in the bowl. There you have it! Now, watch the bowl closely. Every once in a while you will see a word swirl by or even a couple of word clinging together to form a phrase.
When the writing actually takes place, I grab fistfuls of scraps from the bowl, taping them back together in an order that mimics what I am trying to convey. Easy enough. That all said, there are some things on my minds I am going to be sharing with you.
All of these things have been writing themselves in my head for weeks now. In some ways that is a good thing, because I can pull sentences out of my head like a magician pulls a string of handkerchiefs out his mouth. But, it is bad in the way it becomes overwhelming when I am trying to prioritize. Setting up the appointments for the girls is more important than WRITING about how the girls responded to the psychologist. Trying to acclimate into the mini-society surrounding my new workplace is more important than WRITING about the subtle aspects I am trying to catch. Planning a trip to Toronto to attend an international autism research convention because I am thinking about going back to school (again!!!) is more important than WRITING about my hotel reservations. Get it? I finally do.
As I mentioned, these things are all writing themselves as they happen. As a friend told me once, "You write like you talk." That makes me a great essayist but not the best Southern Gothic fiction writer like Faulkner. Well, I guess if all my characters where Pennsylvanian women who came from the Great Lakes rust belt, I could sell a book or two.
I want you to imagine with me what the inside of my head looks like as these things form. First, take a decent-sized edition of a dictionary-- Oxford's will do. Now, put it through a shredder, being sure to save all the little bits. Next, take your every day average glass fish bowl and dump all the papers bits inside. ALL THE PAPER BITS! Make them fit however you can. Okay, we're almost done. Take the nozzle of a vacuum cleaner, turn the cleaner on reverse, and stick the nozzle in the bowl. There you have it! Now, watch the bowl closely. Every once in a while you will see a word swirl by or even a couple of word clinging together to form a phrase.
When the writing actually takes place, I grab fistfuls of scraps from the bowl, taping them back together in an order that mimics what I am trying to convey. Easy enough. That all said, there are some things on my minds I am going to be sharing with you.
A rose by any other name
If we were to know bacon by the name of "rose", it would still smell like bacon. I have been trying to formulate a response to certain articles and changes that are being purposed around Asperger's and autism diagnostics. Recently, I read an editorial in the New York Times that I found a bit upsetting and disturbing. I often applaud the Times' ability to print as close to both sides of the story as you can get (no matter if done under a "liberal" label). However, to see someone vent about their own personal issues under the guise of changing how thousands of people see themselves is shameful. Sir, write a letter to your mother and tell her you're a big boy now. Tell her you didn't like the way she raised you. Tell her you're not a "nerd" anymore. But, keep myself, my daughter, and any other adult or child with Asperger's out of your self imposed dilemma.
If I gleaned properly, I could take home that my daughter is not "retarded" enough to be considered on even the tip of the autism spectrum. I should learn to just realize she is a loser and move on, huh? Well, my daughter has Asperger's. My daughter is not disabled. She is just different. And, different does not hold any negative connotation in my mind. Apples and oranges are different. Some people prefer oranges over apples. But, that is ok. I like both, especially apples with peanut butter.
My daughter (GES) started showing signs of Asperger's at a very early age. She refused to make eye contact. She physically resisted it. And, if she was persuaded to do it, the exchange was extremely brief. She would cover her ears and, basically, shut down when dealing with loud noises or even the noise of crowds. As she grew older, her temper tantrums seems more severe. She would hit herself when frustrated. She had difficulty with speech to the point of getting a battery of hearing tests and therapy. She wouldn't go play with other children when entering a playground. She would obsessively talk about Scholastic books, regardless of what was being discussed at the moment. She would spin in circles. She walked on her tippy toes. She loved to dance, but didn't seem to have the same flexibility or agility of other children her age. She had issues with toilet training. She would line her toys up, instead of use "imaginary" play. She resisted kisses.
And, many of these issues continue to this day. She is now five and a half. Some of these characteristics would seem somewhat normal if they existed independently of each other. But, they don't. Plus, GES has a twin sister. MAS is extremely bright, too. For example, she reads at a second grade reading level (with great comprehension). She does not exhibit all the same symptoms as her sister. She manifests some of the characteristics of high-functioning autism and/or Asperger's, but doesn't hit ALL the bullets. This only makes GES' traits seem more glaring. However, they are both beautiful, talented, loving, brilliant children. Spoken like a true mother.
Myself, I could careless if my daughters become the prom queen or president of the student council. In some ways, I would prefer they don't-- many of my most successful friends avoided those trappings in high school. And, too, I don't necessarily want my children to be viewed as abnormal or atypical, IE. broken. I want to know what I can do to help my children live a fulfilling, happy, and productive life. GES' diagnosis and intervention will help her do just that. With hard work, I hope she does come to a day where she is able to socialize with less awkwardness and handle a barge of sensory stimuli without shutting down. But, when that day comes, it doesn't mean she will no longer be autistic. It just means she will be better equipped through years of education and intervention.
It is no different than teaching your gifted basketball player how to play baseball. He may learn the game well, even succeed. But, that will not make him any less of a gifted basketball player.
I experience some of the same issues as an adult with Asperger's. "But, you look normal." Or, "No, you don't have Asperger's. You're just a jerk." And, this is a good one, "Nah, you have friends." It has taken me forty plus years to build a haphazard skill set which allows me to navigate social interactions with the grace of a crippled buffalo. I am proud that I have had "epiphanies" throughout my life telling me things like, "Don't always say what comes to your mind out loud." Every once in a while I am told I am abrupt or abrasive. But, now, I can go out in public with a certain degree of ease and comfort (that may last only a maximum of fifteen minutes). I can hold my own in a conversation, and with extra effort, not interrupt people as much... AND even give people a turn to voice their concerns or opinions. This doesn't mean I am not on the spectrum. I still have sensory issues that are very distracting and can effect my mood quickly. Too much fluorescent light, too much whistling from a co-worker, too much perfume at the grocery store, or a collar on a shirt being too high on my neck. But, I have learned I don't need to flip out about those things or voice my agitation to everyone around me.
People believe what they need to believe to get them through the day. But, just because you decide you don't believe in unicorns and Asperger's doesn't make me suddenly disappear... or my unicorn, Sir Fuzzy the Duke of Rainbowville.
If I gleaned properly, I could take home that my daughter is not "retarded" enough to be considered on even the tip of the autism spectrum. I should learn to just realize she is a loser and move on, huh? Well, my daughter has Asperger's. My daughter is not disabled. She is just different. And, different does not hold any negative connotation in my mind. Apples and oranges are different. Some people prefer oranges over apples. But, that is ok. I like both, especially apples with peanut butter.
My daughter (GES) started showing signs of Asperger's at a very early age. She refused to make eye contact. She physically resisted it. And, if she was persuaded to do it, the exchange was extremely brief. She would cover her ears and, basically, shut down when dealing with loud noises or even the noise of crowds. As she grew older, her temper tantrums seems more severe. She would hit herself when frustrated. She had difficulty with speech to the point of getting a battery of hearing tests and therapy. She wouldn't go play with other children when entering a playground. She would obsessively talk about Scholastic books, regardless of what was being discussed at the moment. She would spin in circles. She walked on her tippy toes. She loved to dance, but didn't seem to have the same flexibility or agility of other children her age. She had issues with toilet training. She would line her toys up, instead of use "imaginary" play. She resisted kisses.
And, many of these issues continue to this day. She is now five and a half. Some of these characteristics would seem somewhat normal if they existed independently of each other. But, they don't. Plus, GES has a twin sister. MAS is extremely bright, too. For example, she reads at a second grade reading level (with great comprehension). She does not exhibit all the same symptoms as her sister. She manifests some of the characteristics of high-functioning autism and/or Asperger's, but doesn't hit ALL the bullets. This only makes GES' traits seem more glaring. However, they are both beautiful, talented, loving, brilliant children. Spoken like a true mother.
Myself, I could careless if my daughters become the prom queen or president of the student council. In some ways, I would prefer they don't-- many of my most successful friends avoided those trappings in high school. And, too, I don't necessarily want my children to be viewed as abnormal or atypical, IE. broken. I want to know what I can do to help my children live a fulfilling, happy, and productive life. GES' diagnosis and intervention will help her do just that. With hard work, I hope she does come to a day where she is able to socialize with less awkwardness and handle a barge of sensory stimuli without shutting down. But, when that day comes, it doesn't mean she will no longer be autistic. It just means she will be better equipped through years of education and intervention.
It is no different than teaching your gifted basketball player how to play baseball. He may learn the game well, even succeed. But, that will not make him any less of a gifted basketball player.
I experience some of the same issues as an adult with Asperger's. "But, you look normal." Or, "No, you don't have Asperger's. You're just a jerk." And, this is a good one, "Nah, you have friends." It has taken me forty plus years to build a haphazard skill set which allows me to navigate social interactions with the grace of a crippled buffalo. I am proud that I have had "epiphanies" throughout my life telling me things like, "Don't always say what comes to your mind out loud." Every once in a while I am told I am abrupt or abrasive. But, now, I can go out in public with a certain degree of ease and comfort (that may last only a maximum of fifteen minutes). I can hold my own in a conversation, and with extra effort, not interrupt people as much... AND even give people a turn to voice their concerns or opinions. This doesn't mean I am not on the spectrum. I still have sensory issues that are very distracting and can effect my mood quickly. Too much fluorescent light, too much whistling from a co-worker, too much perfume at the grocery store, or a collar on a shirt being too high on my neck. But, I have learned I don't need to flip out about those things or voice my agitation to everyone around me.
People believe what they need to believe to get them through the day. But, just because you decide you don't believe in unicorns and Asperger's doesn't make me suddenly disappear... or my unicorn, Sir Fuzzy the Duke of Rainbowville.
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