Bless me, readers, for I have sinned.
Okay, sinned may be a bit dramatic, but I am not being honest.
About two things, somewhat related.
First, about my extremely negative attitude.
Second, about a little thought that at times takes hold of my mind.
The negative attitude is about Kindergarten. I am just convinced that it’s going to be a terrible experience for Charlotte. I am dreading the start of school.
Dreading it because I don’t want to go through this. I want everything to be fine. I want it to be a positive experience for her. For me.
But I’m just so afraid that she’s going to flounder. That her teacher is not going to “get” her. Won’t see her capabilities and her potential. That special ed will see her as “Asperger’s” and think they know what she needs without really trying to understand her.
I’m having a hard time being hopeful and optimistic. I believe in Charlotte, no doubt, but it’s the school that I have little faith in.
So there’s that negative attitude that I can’t seem to shake. Not a good thing.
And then there’s the thought that takes hold in my head and won’t let go.
I’m not convinced Charlotte fits the Asperger’s label. Sometimes I am, but sometimes I’m not.
And I hate that. I want to hold a firm belief either way. Either she is or isn’t Autistic.
Some things totally fit her. Other things not so much. Socially she’s “got it,” but where’s her special interest? Where’s the repetitive behavior? Isn’t that part and parcel to Autism/Asperger’s.
Apparently I have an insatiable need to define things. I’m not good with ambiguity.
To me, she either IS or ISN’T Autistic.
Why I have this need for a definitive answer, I know not.
I do know, however, that it’s not doing me any good.
So there you have it, reader-friends, my confessional.
I have a piss poor attitude about school and I’m still floating in and out of denial.
Confession over.
Now cheer me up.
15 comments
Comments feed for this article
July 2, 2009 at 12:03 am
Quirky Mom
Hmmm, um, I know how you feel. Is that cheery? Probably not.
July 2, 2009 at 6:23 am
therocchronicles
Is it possible to have a meeting with the teacher before school starts to address your fears and for Charlotte to see the room? I don’t know if she needs that but we did that for summer school for the Roc. We went to the building and saw the room, saw the playground, etc. I am lucky that his summer school teacher is the special ed teacher that will be in his kindergarten room. They have 5.5 weeks to get to know each other and for her to see him in “action.” We will be doing a separate school visit before school starts just for him to see the kindergarten room, playground, cafeteria, etc. because it will be in a completely different building then his in right now. I have your fears too, especially when they labeled him as “emotionally disturbed” instead of the more appropriate “autism” I really liked his preschool teacher and knew that she really enjoyed him as well. I was/and still am worried that the new people working with him won’t see the good in him, will see the negatives first. I was really worried about the all-day factor of kindergarten too but he’s doing great with it in summer school so that has taken that worry down a notch.
I honestly don’t know how to cheer you up about the label! I do know that it can be revisited and if you think there is a more appropriate label you can work to have it changed. Just think of it as a means to get her services. That’s what I do. She may not be as needy as other children but if she does start to have problems in school they will be able to help her.
That probably didn’t help much! Sorry!
July 2, 2009 at 7:14 am
jesswilson
ha .. i love the demand ..
ok, not sure about cheer, but here’s what i’ve got:
first, i was TERRIFIED and i mean TERRIFIED about the prospect of kindergarten. every time the subject came up, i’d cry.
in my town, there are a group of us with ASD kids around the same age who meet to talk about/ compare services. last year around this time matt and i met with the group, many of whom had kids just finishing kindergarten. they desperately tried to convince me that kindergarten was BETTER than preschool. i wouldn’t have it. like sam i am i would NOT eat their damned green eggs and ham. nope, not gonna do it. so i cried.
one year later, i’m hosting the same meeting in a couple of weeks. want to know what i’ll be saying? KINDERGARTEN WAS BETTER THAN PRESCHOOL. EXPONENTIALLY BETTER. HOLY CRAP ON TOAST I CAN’T BELIVE HOW MUCH BETTER IT WAS. and there will be a mom sitting in the corner who will NOT believe me. but that’s what i’ve got. so, to you i offer a plate of green eggs and ham.
second, definitions. this here classification system that we have downright sucks. no offense dsm writers, but honestly? it sucks. but, it’s what we’ve got to work with for now.
the way i see it is this – charlotte is charlotte. the label is useful in so much as it will lead you toward strategies and tools that you need to help her mitigate the challenges that she may have. it also may be a roadmap to help you see some of her gifts.
wedging her into the confines of the definition? pin-holing her? up to you. easy choice.
as for the schools – this is my advice. (did you ask for it? hmm, guess not, so let’s file this loosely under ‘cheering up’) when you sit down with the teacher and staff, talk about your kid. it’s easy to sit in those meetings and focus on the challenges. that’s the point of the meeting, right? fine, but start with who she is. each and every time, talk about some success she’s had, some trait that you love, something that makes her charlotte.
ok, i’m sensing i haven’t done my job. how about a joke?
why do ducks have webbed feet?
to stomp out the forest fires.
whay do elephants have really big feet?
to stomp out the flaming ducks.
July 2, 2009 at 10:09 am
kyraanderson
what about saying, charlotte has some developmental delays and leave it at that? someone might call it ASD, someone might call it aspergers. what does it really matter in the end? it’s all important that she be SEEN, that those around her do their best to GET her, that her needs are valued and respected and that she be given the best opportunity to thrive. all the things you work so hard to provide for her every single day. so she has the widest possible choices in life. that’s my view. for what it’s worth!
July 2, 2009 at 10:32 am
Patty
I agree with the last comment. So much so that it is almost exactally what I was going to say. The spectrum is soooooo vast that C falls on it different than any other child out there.
I know you will, but make sure that you communicate your fears and concerns with her teacher and support staff. Make sure that you let them know that you are willing to do what ever you can to help them and help C. Volunteer to help in the classroom as the classroom mom, so that you can see how things are handled and so that you can talk with C about them later. Trust me most Kinder teachers love to have parents that help, and those that dont? I think are crazy!
One of my parents a couple of years ago wrote me a letter that they gave to me during open house. In the letter they explained everything that they as a family had gone through to get their child where he was at going into that grade, he was “autistic” but by the time I had him he was like most of the other boys in my class. But in their letter they explained what led them to getting him tested and diagnosised, what therapies he had already completed, and which ones he was still recieving. They explained what actions and phrases worked best for them and former teachers to get him to respond when he was having a bad moment. They also encouraged me to call them, email them, stop them at parent pick up for anything.
For me it was wonderful, because I got to “know” him before school started, and I got to know his parents. Through the letter because they were so open with it, I was able to understand that they weren’t going to just letting him skate, or come up with excuses. My favorite line was, without this letter you probably would think he is just a normal everyday boy, until his first meltdown, then you would think he is a horror. We want you to know the kid we know and be able to understand his first meltdow may be tomorrow on the first day of school with the change in enviroment.
July 2, 2009 at 11:57 am
Heather
My dilemma is that for her I’m maintaining an “oh this will be so much fun!” front and behind the scenes I’m debating what approach will work best. I’m going to wait until they dole out classroom assignments and go from there. We’re without services, so this should be fun! I vacillate from feeling anxious and overly positive—hoping it turns out somewhere in the middle.
July 2, 2009 at 7:40 pm
Tanya @ TeenAutism
Hmm. Cheer you up? How about a little previously unposted Nigelism? Okay, so Nigel’s walking through the house, checking the times listed on all the clocks. He walks into the kitchen and says this to me: “Looks like all our clocks are out of order.” He pauses. “But mine is the right time.”
And if that didn’t work, know that I am feeling the exact. same. way. about Nigel starting high school in September. Ugh!
July 2, 2009 at 7:54 pm
Laura
Also: even if she is today, she might not be tomorrow. Oops. I mean, it doesn’t really matter. Stop confusing me. Don’t you have a pot of not boiling water to watch? :p
July 2, 2009 at 8:26 pm
goodmum
I’m right there with you, friend. Worried sick that the school won’t be accommodating enough for my boy. Horrified at the thought that his teacher won’t see the wonderful little man that he is and will only see him as a liability or as extra work.
I’m also up in the air about my kid’s “diagnosis.” Or lack thereof. It’s not “officially” OCD yet and, from reading so many blogs about others’ kids who are on the spectrum, I still wonder if my boy is on there somewhere, too…. It’s all so vague and subjective, isn’t it? And that doesn’t make it easy for us moms who want to put it in its place and deal with it head-on.
I feel your pain. Vent/confess away!
July 2, 2009 at 8:44 pm
Patty
I don’t know if this will cheer you up, but I don’t believe you are in denial. You know Charlotte better than anyone and you know how she doesn’t fit the Asperger’s label. In so many ways, Danny reminds me of Charlotte. his teacher thought he had Asperger’s, but he doesn’t have the interest, etc. And the doctor said he isn’t autistic, though I often doubt that diagnosis. The problem is that the autism spectrum is exactly that: a spectrum and each kid on it is his/her own person and different from one another.
I don’t know whether Danny and Charlotte are autistic, but I think it is vitally important that we, as their moms, see their unique characteristics and strengths and weaknesses. We need to know that they aren’t a label–they are people, so that we can make sure they are treated as such.
I don’t know exactly where I am going with this, but all along you have seemed very honest about Charlotte and her development. You don’t at all sound like someone who is in denial. I think you should listen to your gut!!!
And I totally understand how you feel about just wanting to know once and for all if your child is autistic. I feel the same way. I often wish there were a blood test that could give me a definitive answer…..
July 2, 2009 at 9:37 pm
Kristin
Oh my, I could have written your post! Alec is an enigma. First we were told he is on the spectrum, then by 2 more neuropsychs (2nd and 3rd opinions) told that he isn’t. Then just today I got testing results from his school that show he probably IS on the spectrum…. This after a year of them (the school) telling me there is basically nothing wrong with him other than attention issues. I really would just like to know too even though I am trying to just treat the symptoms and not worry so much about the diagnosis. I read the info about Asperger’s and I also don’t see it in him – no rigidity, no “little adult” stuff, no obsessional interest. Mostly just the social stuff and sensory seeking behaviors. He also has language delays. Whatever… he doesn’t fit anywhere neatly. I just worry endlessly about his future…
As for kindergarten, he has done one year in an “At Risk” class and will be repeating in a mainstream class – his first non-special education class and I am terrified! Terrified he will not fit in, terrified the teacher will not get him, terrified his problems will become more obvious to him and everyone else when he is in a class of typical kids.
July 2, 2009 at 11:38 pm
kristen
wow. I get this. Every last word. Denial? Yeah, got that. Fear? Uh huh, that too. But here’s the thing: I agree with Kyra and Jess and so many other commenters here. It’s hard. But, if you don’t get hung up on the label and take it one day at a time, things will have a way of working out. Stay on top of that teacher, make sure Charlotte is getting what she needs in the classroom, make sure they SEE her and not the label–that’s your job. Soon enough it will be just the thing you do without thinking.
July 3, 2009 at 9:37 am
Jenn
These days Nick’s PDD-NOS is largely invisible to most people. His good days far outnumber the bad. I guess I’m still a little nervous that people will consider (and expect) him to be a “normal” kid until he has an “off” day. I was terribly worried about it all until we met with the new teacher.
For our IEP I made a bio sheet. The header had a deliciously cute picture of Nick and a summary of our journey thus far, from diagnosis to our therapies…much like the letter Patty received from one of her student’s parents. It was VERY well received and it helped open a two-way channel between Nick’s teacher and us. I’ve seen some parents do a power-point slide show set to music instead.
His new teacher asked if she could come to our house this summer and spend an afternoon playing with Nick and his friends as a way to see him interact with other children and also to relationship build before the first day of school. She also asked us to come by the classroom during the week before school and help her set up the room and to let Nick explore, set up his desk etc.
The most important thing is, as many others have said, is that they just see Charlotee as Charlotte, and not a label.
Sending Hugs
July 3, 2009 at 3:13 pm
pixiemama
It is hard. It is crazy-making. I’m in and out of denial a hundred times a day. I am frustrated beyond belief. And Jess is right – Kindergarten is not preK … and for us, too, it was so! much! better! than preK. Easy for me, as I’m already twisted in knots over 1st grade. And other things.
Be OK, Be OK, Be Ok today…
July 4, 2009 at 5:00 pm
leechbabe
It is so hard.
You have control over the label, use it to open doors and don’t let anyone else use it to close doors on Charlotte.
The hardest thing with girls is that ASD labels are designed to fit boys on the spectrum. Girls are very different. Their special interests are more likely to be socially acceptable, it is just that their interest will be deeper and more comprehensive than is normal.
I like the way Tony Attwood puts it, we all have fragments of Autism within our personality make up. It is just that some of us have more of those fragments than others.