by Pat on Dec 20, 2008 at 1:38 PM
Filed in Autism and Stress | Parenting Autistic Children | Stories from Readers
I’m a mom to a 9 yr old little girl. She has just been diagnosed with Asperger's after saying to a favorite stuffed animal she wanted to die. I took her straight to the ER that night. But the next day, I finally had someone that would listen to us. (more about that later)
Once Taylor turned 3 yrs old, I started to notice some things. She would look at me, but with a blank stare, she wasn’t there. The defiance was there too, still is. I noticed that after she started school (she was about 2 ½) she would line up her blocks in a straight perfect line- blue, yellow, red, green, and repeat the pattern. I thought she learned that at school. As I think back, I don’t remember her really playing with her toys. She did have her favorite stuffed animals that she would carry around. We still have them. Her doctors at the time dismissed any concerns I had. She was hitting all her milestones either on time or before. No speech problems. Kept telling me there was nothing to be worried about.
About 3 ½ yrs old, she started wetting her pants. She was fully potty trained. The teacher told me there was something wrong with her and to take her to the doctors. I did, they ran all kinds of tests to check for bladder and infections. Nothing. I sent her back to school for the remainder of the school year and couldn’t wait for June.
June rolled around and I had a new school all lined up. She went to summer camp there and had no troubles. She stopped wetting herself, so I figured that the old school was doing something to upset her. When Sept rolled around, and things where expected of her in class, and she was talked to for bad behavior, she would stand there and wet herself. It actually took the teachers and staff to figure this out. But they knew they had to. They would watch her to see when she did it. It took a few weeks before finally catching her and what had happened prior to her wetting herself. The teachers where now more aware of how to deal with her.
When Taylor was in pre-k and kindergarten, and had to start doing work, she would sit in a chair for hours and not do a thing. She had no care in the world that she was loosing recess. She refused to move. She would sit with her arms crossed and a blank look on her face. Forget trying to get any Kindergarten homework done. She would tell me that there where “too many kids in her class” or something like that. I never understood what she meant.
Since she was “school-age” (3 yrs old in NJ), I tried getting her tested. But the township school district refused. She was finally tested when she entered the 1st grade (age 6). I forewarned her 1st grade teacher to how she was. The teacher dismissed that and said she wasn’t going to put in the paperwork for her to be tested until she got to know her.
Well after biting her best friend (looked just like a paper cut) and telling him she was going to kill him, she was suspended and sent right to the ER for a full psych evaluation. ER said she was fine and school said the suspension would stick. Now, at this same time, the school was just finishing all the reports from her testing. Once again, too many kids in the class room. The have found that she is Severely Emotionally Disturbed. And they where going to be sending her to a school in town that had the self contained class room she needed.
She was doing ok at the new school. She was “afraid” of her teacher. She was still wetting herself though. The teacher was getting her to do her homework and making some progress. Than we moved cross country.
While in NJ, Taylor wasn’t reading quite yet, but always had a book in her hands since a baby. In the car as we drove, she started reading! That was a huge deal for us. Yah, we are getting somewhere. Once we got to out new home, it took the school a few weeks to figure out where they where sending her. They finally got her in to the school down the street, turned out it was full of children with major issues. She is now in a class that would throw, hit, bite, and other aggressive behaviors. She was actually attacked that year. Second grade wasn’t much better. She had another student that attacked her as well, that student was pulled out of that school. But she still was in a class that had kids with negative behaviors. So she started picking those up. Second grade they did start to mainstream her. She was not doing all that well with that. Too many kids again.
By the end of second grade, the school was telling me that she is fine, and they feel she will be just fine over in the other school she should be in. They told me that she would have the help she needed there according to her IEP.
The beginning of 3rd grade she seemed to be ok. So I thought anyway. I had my meetings with her teacher and the teacher had no idea why the other school thought Taylor was ready for mainstream classes. Taylor was not doing well there at all. Very disruptive all year, no friends, was threatened. One week, she was elected as Student of the Week, and 6 or so classmates wrote nasty stuff about her. Her teacher flipped out and had the school counselor back in the class. Hours earlier, they had just done a lesson about bullies. By Monday, all involved children had the parents in the office. Taylor already has social issues, talk about making them worse.
By February,Taylor’s psychologist finally said to me it was time to put her on meds for ADHD. (this is after a years worth of visits and not taken lightly. I did not want to medicate her.) So off to the doctor's office. It took us a couple of months to find the right one and right dosage. In May/June, I signed Taylor up for karate classes. Took to them like a fish to water. She was doing much better being on the meds and taking class. School on the other hand was just upsetting the crap outta her. I decided I was going to home-school her for 4th grade. But her grades dramatically improved. She went from C’s & D’s to A’s & B’s in the last semester of school. During the year, I'm fighting them to test her for Autism. They finally did, and told me that even with a score of 43 out of 50 questions of having observed Autistic behaviors, they don’t see it. They tell me its just a case of OCC. (She is also ODD & ADHD) I’m not buying it.
Its now the 4th grade. Taylor is being home-schooled. Doesn’t seem to like her general ed teacher very much, but has a connection with her special ed teacher. Now that I know more about how the program works, her grades are climbing. She needs the one-on-one to get anything done.
Let me go back to how they finally made the A.S. diagnoses. Her primary doctor sent us to a Psychiatrist to follow up with some concerns. This doctor talked to me only, asked Taylor a few questions, threw a bunch of leaflets at me, wrote a script for a Bi-Polar medication and sent us on our way. I couldn’t believe it. I filled the medication believing this woman knew what she was doing, and within about a month ½, this kid was no longer sleeping. And she is not even taking the full dose of medication. This is what lead up to her saying what she did. Its now 2am, I’m trying to go to bed, and she is wide awake. Tried getting her to bed, and that was the end of that. Screaming bloody murder.
Next day, it's now almost noon before they release her to me. They feel she is not a danger to herself. They do want her in a program first thing the next morning. I drive down to the hospital, sign papers, and they send me on my way, leaving her there. They will bring her home later. Ok. Off I go. Within the 4-5 hrs they had her, they where already seeing the A.S. I take my mom with me to the meeting with the hospital doctors and related staff members to see what we are going to do with her. First thing out of his mouth, “Taylor is demonstrating Aspergers with psychosis." I was happy about the A.S. diagnosis due to fighting with everyone that I knew that is what is causing a lot of her issues. But the psychosis threw us for a loop. Turns out, she is seeing things while in their care. Saying & doing things beyond what a kid with A.S. does. So he took her off both meds. He wanted to have her head clear to be able to find out more. A week later, he sends home a new script for Abilify. NO NO NO!! I put my foot down after watching the commercial and reading about it. So when I went back to meet with him. He refused to treat her any further without her being on the medication. They released her that day.
After a few weeks being back home all day, I was finding that she couldn’t sit and do her school work, getting all upset, melt down after melt down. I put her back on her ADHD meds and is doing much better again. Her primary doc is sending her back to see a psychologist. And said that the meds for the ADHD will not hurt her. It was a combo of both the ADHD & bi-polar meds that made her start to loose it.
In the end. I finally got the diagnose to what is causing my 9 yr old to flip out. Now all I need to do, is get her the right services to help her be who she is. She is still taking karate classes. She is currently in her 4th belt (out of 9) and takes a leadership class through karate & still takes her therapy horseback riding lessons.
(other things she did-- would pee/poop in a toy container and stuff it under my bed or hers, she was about 2 yrs old; steal food & hoard it after I went to bed, about 4+ yrs old- current; picks on the dogs; does not listen, still has no friends, does not play with her toys properly, lines up her cars, horses, and dolls; heaven forbid you touch them. Collects rocks. Poor bathroom hygiene. Still plays in a sand box, prefers it dry. Still has major melt downs. Stamps both her feet when mad, turns her back to you, crosses her arms and sometimes screams. Stamps her feet all the way up the stairs as she is screaming. Obsessed with horses. Does not talk about anything else. We has to forbid her from writing about it for school. More things I cant think of right now……)
So for now. I’m going to keep her out of the public schools here. Continue with the home school, karate and riding, and see what is next.
That is our story.