THAT word.

CheneyParenting2 Comments

I’m not really sure how to begin this, because one of the biggest problems I have as a person communicating with people is that I don’t like to share my unhappiness, bad news, or problems. If I’m upset, I try as hard as I can to hide it. If something terrible is going on in my life, I only want to share it with my closest friends, and even then I do so with reservations. Maybe it’s because I don’t handle other people’s bad news or grief well. When someone dies, when someone loses a job, when calamity strikes – I just don’t know what to say, and I don’t know how to comfort, so my gut instinct is to never put myself into a social situation where people will feel the need to try to comfort or commiserate with me. It’s just so damn awkward and uncomfortable.

Then, there’s Elise, my daughter. I don’t want to talk to you about my daughter. I don’t want to talk about parenting, about being a mother, or even about YOU being a mother. I don’t want your comments, your unsolicited advice, your judgments or your observations. I don’t want you up in my business at all. At least I didn’t. Until last Wednesday.

The thing is, I keep secrets. When I don’t want to talk about something, because it upsets me, because it’s none of anyone else’s business – for whatever reason – I just don’t talk about it. So it may or may not come as a surprise to everyone to hear that Elise has been seeing a councilor for her behavior problems for just about a year now.

Here’s the story, in a nutshell:

About a year and a half ago, Elise was going to a private kindergarten that was part of her old day care. We thought it was a great program – there were only six kids in the entire class! We thought it would be great that she would be getting so much one on one attention from her teacher and that it would help her get a leg up in school. Halfway through the year, just after she turned five, her teacher not so carefully suggested that we put Elise into public school because they didn’t have the resources there to help her with they thought were developmental delays.

I was shocked. Up until that point, Elise had been doing well on progress reports. She was learning along with the other students, though when it came to doing things like art projects, she never seemed to get much done. Her papers were always quite bare compared to those of other kids. Her teacher at the time said that Elise just couldn’t sit still. She was always more interested in what other people were doing than what she was supposed to be doing, so she was always up out of her chair bugging the other kids.

“ADD,” the teacher said. “I think she has some developmental delays, and definitely ADD.”

Plus, she was hitting other kids. Hitting them, kicking them, pushing them.. almost every day.

So we did what we thought was best. I moved out of New London and into Waterford so she could go to a better school. We enrolled her in public kindergarten, and we got her a councilor, who I’ll call Ms. Ray (not actually her name). Elise started school in March of last year and by May we were having constant meetings with her teacher. She was behind in everything – which, evidently, wasn’t Elise’s fault so much that the curriculum at her school in Waterford was so much more advanced than the curriculum she had been following at her old school. So that was a problem, but the biggest problem was that she wasn’t making friends. She wasn’t socializing at all, and when she did have interactions with other students, they were bad, and often violent.

Then, in June, she got suspended. A kindergartner. Suspended from school for hitting a little boy. I was shocked, again, and mortified. I went in and demanded that the principal explain why sending a five year old home from school was the best way they could find to deal with behavior problems, and I was told that the school had a strict no-tolerance policy for violent behavior.

So, we ramped up our efforts. We got through the last few weeks of school and worked with Ms. Ray over the summer to prepare Elise for her second round of Kindergarten, as they were holding her back, which was actually fine with me at that point, and best for her.

Over the summer, Elise saw three different specialist to try to evaluate her and figure out what her deal was –  and none of them could pin it down.

See, Elise is a sweet girl. She’s smart, she’s intuitive to other people’s emotions, she’s caring and gentle and funny and friendly – to a fault. Yet she’s impulsive. She reacts physically (by lashing out and hitting) before making a mental connection that that isn’t the appropriate response to anything. She has trouble focusing on things, but it isn’t because she’s hyperactive – If I’ve learned anything so far from this journey it’s that kids with ADD/ADHD don’t get near perfect report cards in kindergarten, which Elise has done so far all this year.

Really, this year has been great up until the past two months or so. She hadn’t been violent towards kids, and she’d been reaching grade level and even excelling in all areas of the curriculum. But we kept hearing the same thing from her teachers. “Elise doesn’t listen. She just doesn’t listen.”

And she doesn’t, I know. You know how some mothers say, “I’m going to count to five and if you don’t go put your shoe’s on, I’m gonna….?”  Well, I can barely get to that point, because it takes me five tries just to get her attention in the first place. Anyway…

Psychologists and councilors use this book to determine diagnoses for their patients. Let’s say you wanted to diagnose a child with bi-polar disorder. You’d have to be exhibiting X amount of behaviors from column A, and X from column B, etc.; for them to be able to pin down a diagnoses. Without a diagnoses, you aren’t going to get any help. Elise’s teachers, the school principal, and the school psychologist and behavioral specialist are at their wits end on what to do with Elise, because she isn’t behaving normally even within the bounds of abnormal behavior. I’m shocked that they haven’t suspended her again, because the hitting and lashing out continues on a near daily basis, but I guess it’s cause they too believed all along that something was wrong, and they just didn’t want to help diagnose it because it would cost them money. Yeah. Wait til I get on about that subject.

No one could pin down anything for Elise. Everyone we talked to kept saying ADD/ADHD – even though at the same time they KNEW that even though she exhibits a lot of those behaviors, that isn’t the root of her problem. So we saw more people and more people, and Ms. Ray talked with more and more councilors and psychologists and psychiatrists at her group about Elise and her issues.. and then for the first time, a few months ago, the word started to get thrown around.

Spectrummy.

THAT word.

“She seems sort of spectrummy..”

“She’s exhibiting a lot of spectrummy behaviors…”

Of course, they were talking about autism spectrum disorders, and I immediately thought “Hell no, not my kid!” Because when I think of autism I think about kids who can’t talk, who can’t go to a normal school, who can’t function in society. Or I think of Aspergers kids who are socially awkward and have strange quirks – and really I don’t know what to think at all, because all I know of either disorder are the things I see and hear on TV or the media, and none of it is great, and certainly none of it can be related to my kid, right?

Wrong.

So, in a nutshell, this is what this post is about. This is what this blog is going to be about. After a year and a half of weekly sessions with her councilor, with evaluations by at least four different specialists, and input from every person who has had contact with Elise at any of those offices, we’ve come, my friends, to an actual diagnoses.

PDD-NOS.

Pervasive developmental disorder – not otherwise specified.

What does that mean, you ask?

Whelp, I’m learning as I go. It’s only been a week, and it’s a lot to sink in. Is she on the autism spectrum? Yeah. In fact, Autism and Aspergers ARE pervasive developmental disorders. PDD-NOS is the diagnosis you give when a patient does not fully meet the criteria to diagnose autism/aspergers but are still on the spectrum. So far, the best explanation I have found is here:

http://www.autismspeaks.org/what-autism/pdd-nos

So, that’s it. That’s the news. Frankly, one of the reasons I wanted to blog about this is so that I wouldn’t have to tell everyone separately – remember when I said in the beginning that I don’t like to talk about things that upset me? This obviously upsets me. I hate crying, and I especially hate crying when I have to do it front of other people, and I pretty much can’t even think about any of this without crying, so. This is what you get.

A special note to my local friends: No, I don’t want to talk about this with you right now. I also don’t want to hear about how your brother’s neighbor’s cousin has autism and is doing GREAT, and I don’t want to hear about this wonderful program you’ve heard of that might help, and I don’t want to hear how sorry you are and that it will all be okay. It’s been a week with a diagnosis, but it’s been six years of living with Elise and knowing her and what’s best for her, and we have an entire platoon of people who are professionals working with us as well. But this is a big deal, obviously. It’s pretty much over-taking my thoughts lately and I guess I just needed to get it all out so that when people ask what’s wrong with me, or what’s wrong with Elise, I can just point here and not have to get all emotional as I tend to do.

And now suddenly, I’m a mommyblogger. Oy.

2 Comments on “THAT word.”

  1. Sorry I'm so late to this. My blog reading fell down because things got insane. I'm not going to say I'm sorry. I'm going to say that you have a name now, and with a name comes power and diagnoses. I'm following over to the new blog.

Feel like sharing some thoughts?