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
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