My sweet girl (that sweetness was lost for quite some time) has been through so much in her short life. Sometimes my husband and I catch ourselves thinking that she is older than she is..."How can she only be eight years old?" Sometimes a month of tantrums and screaming and worry and googling and calling "professionals" has happened in a day.
At one point, after we had been seeing the psychiatrist for a few months and had put her on psychiatric medications (one of my big fears for her) and had changed schools twice, I was desperate for a diagnosis. Not because I wanted a label for her. I didn't want something to be wrong with my child. But something was very wrong with my child. I needed to know how to treat it, and I felt like a diagnosis would point me in the right direction.
Some of the time, we could keep things "under wraps". But anyone who spent any kind of intimate time with us knew that something was not right with our child (a lot of people thought that something was poor parenting, but that's another post). My sister mentioned that a friend had a grandson who had been diagnosed with Asperger's Syndrome, and he seemed a lot like my daughter. And I had been thinking a lot about Asperger's on and off.
In fact, I mentioned it to my daughter's teacher at the end of her first grade year, but the teacher shrugged it off and said that all kids had tantrums. When I mentioned her uniform that she could never zip up all the way and the fact that she could never wear her mary jane style shoes completely (she walked on the backs of them), she seemed to think that was a phase...a normal first grade thing (I had been a first grade teacher for many years and didn't think so). She wrote off the fact that she had trouble making friends with the other kids as having a particularly hard group of kids to break into...only two other girls in the class (but i had been up to school many times with her and had seen the difficulty she was having with peers). My daughter seemed unaware of "social cues" and how to handle herself in the social situations of school. She did really want a friend, but she couldn't quite figure out the dance.
I called our school district's evaluation team and asked what they thought. The psychiatrist on the phone said that it sounded a lot like Asperger's to her, but we'd test her. They went through all of the testing, academic, IQ, emotional, etc. and came back with, "Why, exactly, did you bring her to us?" Her IQ was very, very high. She had been social during the testing situations, and the evaluators seemed to enjoy their time with her. They did acknowledge the OCD that I reported and some emotional issues (she really hated school). They understood that I could not get her dressed for school or get her to do ANYTHING in the morning...certainly no socks or shoes, and they seemed to recognize this as relating to OCD, but other than that, they thought all was well.
So....I let it go. She'd been evaluated; it must be something else. But things persisted that made me think Asperger's. Routine was huge, and a change in it rocked her world (and ours). She could play alone for a long period of time...or work in a workbook or color...she had what seemed to me to be a really long attention span for a young child.
She had a hard time with new people or places, etc. In fact, when she was three months old, we took her to my parents' house for the first time. My mom, being very excited to see her, rushed out to meet us. She took my girl into the house and sat her down on her bed for a good look at her. Sweet girl didn't cry at the rushing in. But when she was on the bed, she began to look around (we always thought she was very observant!). It was like you could see her mind thinking and checking and realizing that she had never been there before. And she became hysterical. Enough that I clearly remember it today as odd. (Even in the nursery at the hospital, as the other babies cried, she was quiet and observant.)
Darling girl was poorly coordinated. Not like she was tripping over her own feet, exactly, but she had done poorly on her report card in physical skills in kindergarten. She had low muscle tone, a lack of energy, not much physical stamina. There were definitely many explosive tantrums. And she definitely had sensory processing issues. Specifically, she couldn't stand the way that any type of clothing felt, hated having her hair brushed or me even touching her. She hated strong smells, loud noises, etc.
So I kept thinking Asperger's and even asked her psychiatrist about it. He seemed reluctant to commit but when I asked, "What do I tell people who are asking what's wrong?" He said, "You could tell people who are asking that it's like that." Now, I'm grateful for his reluctance to commit. I'd hate to have something like that on her "permanent record" with insurance or anywhere else. Especially since I think she's going to be fine, eventually.
I called a developmental specialist recommended by a friend who's daughter also had some sensory processing issues. We went for a long evaluation. She was an expert on what autism looked like. By the date of our evaluation, I was reading my second book on Asperger's and was convinced that this was her.
The specialist's conclusion? Not Asperger's. Too high functioning. Too social (even though she was often very anti-social). Too able to draw abstract conclusions. Too empathetic (but by this point, not to me or other members of our family).
She recommended that we hang on for a bumpy ride and said that she could easily be diagnosed with oppositional defiant disorder in addition to ocd, generalized anxiety. Since our girl was often really aggressive by this point, the specialist recommended that we put a lock on the outside of her door so that when she became aggressive, we could let her calm down (or tantrum) in the room rather than hurting someone. She said that things could get a lot worse when our girl entered adolescence, and we needed to make sure that we had her in with a good therapist by then.
It seemed like that was the best we were going to get. Hang on for the ride.
I was very upset. I didn't want her to have Asperger's. But again, I knew that she had something. And without knowing what it was, we didn't know where to go. It sort of seemed like there was nowhere else to go. Except back to that wild diet idea.
Following the specialist's recommendation, we quickly got sweet girl in to see a play therapist. In addition to twice a week occupational therapy. And twice a month (and sometimes more often) psychiatric visits. Oh yeah, and an antidepressant and a mood stabilizer. Which would have been well worth it all if it had been working.