****DISCLAIMER: In light of Ohio SB5, I have chosen to leave all politics out of this post. If you chose to comment, please attempt to leave politics OUT of the discussion. This is neither the time nor the place.****
The first day of school arrived. It was very easy to get Sophia excited to go. She had picked out her own bookbag, and had already visited the classroom, so she was pretty excited…only she didn’t grasp the notion that I would be LEAVING her there. She had never been left alone with anyone other than family to this point. Never. Not once. Since it was the first day of school, but not the OFFICIAL first day of school, and I wasn’t told otherwise, I had planned to arrive fairly early to help her get accustomed to what was going to happen. To back up, busing was offered as part of her IEP. We opted out of it, mostly because I was home so it made sense for me to take her, and also because there is no way in HELL I’m putting my kid on a bus. No way. Do you watch the news? NOT HAPPENING. The teacher tried to talk me out of it, but I stood firm. She said that children with separation issues needed the time on the bus to get used to not having their parents. All I saw was a little cherubic face turning red and stained with tears, sitting on a bus with people she didn’t know, completely lacking the skills necessary to self-soothe. No thanks. So back to the first day…we arrived around 12:45, just 15 minutes early. I walked into the office and everyone seemed pretty shocked that we would be arriving like this. They told me to just go ahead and walk her down to the room. Ok…no problem. I took her down, and she was excited to see the toys that she had played with during the IEP meeting again, and immediately started playing after I took off her coat and bookbag. No teacher in the room. Ok…it’s her break. Again, no problem. Then the teacher arrived. “Oh I didn’t think you’d be this early. Would you mind staying here while I went to the bathroom real quick?” Again…NO PROBLEM. When she returned, she projected an attitude of annoyance, again, that I didn’t put her on the bus, and told me in the future to just meet her outside when the bus arrived. Sure…that’s weird, but sure. So I told Sophia goodbye and, naturally, she started to cry, completely unsure, now, of what was going to happen. But I just kept walking. Honestly, I was unconcerned. I was just looking forward to some ME time, grocery list and coupons in hand. They told me school was over at 3:30, so I planned to be there at 3:30. When I arrived at 3:30, though, the bus was gone, and Sophia was standing out front with the teacher, tears running down her face. “She did ok. I helped her with the activities, but I didn’t want to push her too much on her first day.” These are all normal things in my opinion, you can correct me if I’m wrong. A child that is developmentally behind doesn’t NEED excessive pushing while still adapting to a new environment. As the week went on, each day became more and more interesting. Clearly she wasn’t adjusting as easily as we had hoped, and it was starting to get more and more difficult to get her out the door. She was terrified of the unknown, not knowing what was going to happen day-to-day. I asked the teacher for her opinion on tactics. “Honestly, I don’t know much about Autistic kids, but let me ask some other teachers to get their opinions.” At the time, I liked the teacher’s honesty. Looking back now, I should’ve taken that as a sign…but we’ll get to that.
The next day, she told me she was going to make a picture activity schedule to send home for Sophia with each day’s activities so we could talk about the day at home and alleviate some of the stress. Three weeks went by, Christmas break rolled in….she finally gave me the pictures. By the time we got them, Sophia had already adjusted to the day and we never ever used them….EVER.
Taking a step back, most kids, disabled or not, get sick when they’re introduced into the germ-pool that is public school. We did not escape this. Unfortunately for us, she is not able to communicate “hey folks, probably shouldn’t send me to school today, my stomach feels bad,” so it just appears like a child’s tantrum to get out of school. So one day, I drop her off and she has a HORRIBLE episode. By the time I got back to my side of town, I got a call from school that she had thrown up all over the table and herself. So I went all the way back to get her. We thought she was forcing herself to throw up to get out of school, but she was actually sick, and missed the rest of the week. By the time she was 100% better, she was on break. She finally got all the way back to healthy and it was time to go back to school. Over break, she had talked a lot about school, and at the beginning of week 2 of break, she was asking to go back. This was a nice welcome change! So it was relatively easy to get her back. According to every report I sporadically received, she seemed to be doing better and adjusting nicely. We were seeing positive changes at home, so as far as we knew, things were good. Then in January, we received the first progress report from the IEP. The first time I read it, I was livid. The speech therapist said she couldn’t do ANY of the goals, and some of them she had passed months ago in private speech. Her behavior wasn’t progressing and they all said she couldn’t “focus” on activities, teachers, or therapists. It was bad. I was angry because (a) I didn’t believe it was all true and (b) why wasn’t I made aware of this before? When we had the initial evaluation for eligibility, they thought she would be in preschool for two years, thus putting her a full grade-level behind her peers. I thought once she got into school, her intelligence would bash that notion right out of their heads, but when I read this progress report, I prepared for the worst. In January, we also started her in private social skills therapy, once a week. Upon re-reading it, I started to think about it more and, after discussing it with our private speech therapist, we figured she just must be having issues with generalizing what she learns one on one with a group, so she was still doing fine, just needed to shift our focus to generalizing skills.
Parent-Teacher Conferences were in February. Sophia became horribly ill, and missed the whole week of school before conferences, but on that Friday, while her and I tried to get a nap in on the couch, a psychologist from the school called me about Kindergarten Readiness Testing. I was definitely shocked. The people we talked to at the time of enrollment said there was no way she would move out of preschool after half a year, and the progress report we had seen seemed to confirm that, so the fact that they thought she could move on surprised the crap out of me. The psychologist asked if I minded an intern testing Sophia, because they are trying to expand their knowledge of Autistic children. Ok…I would think you would have to know these things, but sure, whatever. Test away. “Would you like feedback from our private therapists?” I asked. They said they would send paperwork for them, along with the paperwork I needed to fill out. When the packet arrived, though, there was no separate paperwork for my people. Just me. No input from the professionals I pay, that have never asked for “outside” help to deal with my Autistic child. When it came time for the Conference, I was on edge. I had NO idea what was going to happen, and I never got a “warm, nurturing” vibe from the teacher in my DAILY interaction with her. The teacher starts in, telling us what a joy Sophia is, how cute she is, how sweet she is, blah blah blah. We’re telling her about some of the issues we’ve seen, what improvements we’ve seen, blah blah blah. She tells us she’s progressed to playing beside a child now, not really with, but she’ll play beside them. We all agreed we need to figure out some social stories to work on getting her to poop on the potty. We told her we were going to try to get her a haircut because we’re sick of all that hair. “Yeah she’s got some awesome dreads twisted in there.” Excuse me, what? You probably shouldn’t say that about a kid…but you’re a special needs teacher, I’m sure you deal with a lot of stress in your day, and we both use humor as a stress reliever too…I’ll let that one go. Then it was time to talk Kindergarten. I inched up in my miniature children’s chair, preparing for a fight. “There’s no reason why she can’t move into Kindergarten,” she and the Physical Therapist say in unison. PHEW. Ok..so we’re moving forward there! YAY!!
Then in March, we started seeing some…behavioral changes. She started verbally stimming (that is, talking/singing/humming) non-stop, both at home and at school, and the teacher said that she had been screaming in the hallway and covering her ears like she was scared of something in the hall. I couldn’t figure ANY of it out, and in the meantime, her sleeping habits had started changing, too. She was waking earlier and earlier, waking more frequently during the night, always tired, no matter how much sleep she was getting. All very unusual behavior for her. So I started to shop for behavioral therapists. I found an ABA program. Much to my earlier hesitation, I decided we had to do it. I had had no success in finding anything for her to do over the summer, and the thought of having in-home therapists to work with her was becoming a more and more appealing idea, especially to work with her on anxiety and transition. I also talked to the head of our assessment team at Children’s, who scheduled a behavior evaluation for the end of April. We also discussed possible sleep disorders, maybe sleep apnea, even, since she snores like a 50 year old man driving a dump truck through a nitroglycerin plant . Things were in motion now. We had also just started private OT, and started Sensory Therapy, which had seemed to cut down on some of the verbal stimming. We got a trampoline so she could bounce out her “hyper” and started a yoga and therapy ball regimen at home, for sensory AND strength issues. Things were looking up. We got a dentist through Ohio State that specializes in Autistic children, and an eye doctor that does the same. We were headed in the right place. And it was Spring Break….
I met with the ABA consultant the Monday before Spring Break. If you recall, I was not previously a fan of ABA and after talking to the psychologist ONE TIME (he suggested putting her on ADHD meds without ever meeting her), I was less thrilled. I will get more into detail about the ABA program in a separate post, but for these purposes, I fell in love with the home consultant and we were set to get started right away. As part of her evaluation for the home program, she needed to evaluate Sophia at school to see what she her behavior and determine what needs we had to address. Seeing as how this school was SO stellar at communication, it took many weeks for our consultant to actually get in touch with the teacher. In the meantime, I had the meeting with the “team” about the results of the Kindergarten Readiness testing, and had scheduled the IEP meeting for early May. Our consultant had arranged to meet us there and serve as an advocate. Unlike some of my other “friends” I had made in cyberspace, I was not provided with an IEP blueprint in advance of the meeting, and after hearing some of their horror stories, I was prepared to go in guns blazing, and I wasn’t leaving until I got what Sophia deserves. Much to my shock and amazement, they gave us everything I wanted. There were some very weird things that came about at this meeting, though. For starters, the school administrator that had been assigned to us said “I was so surprised by how much she actually picked up when I was testing her. All she does in the classroom is walk around away from the group and talk or sing.” Why were they letting her do that when they know she needs reminders to focus? Next, I had seen in the evaluation report that in gym class, she had been highly agitated and was seen “crying in the corner, covering her ears. After some time, she calmed down and began talking and laughing to herself.” When I mentioned this to the “team,” they all acted shocked and said that must have been an isolated incident and that I should ask the teacher about that. Maybe it was an isolated incident, but (a) why weren’t we told about it? and (b) it influenced part of the psychological test results, so it was kind of a big deal…especially the part where they said she began “talking and laughing to herself.” Finally, they had made many of her goals harder for Kindergarten, which is completely understandable, except that the speech goals in her initial IEP were nowhere close to being met and those were the goals that were drastically more difficult for Kindergarten. If the speech therapist at school, who at the time had STILL not spoken with our private therapist, didn’t think she was progressing at all on the simple tasks in the preschool IEP, why make such challenging goals for Kindergarten?
Later that month, literally 2 weeks before school was over, our home consultant was finally able to visit the classroom. I could fully chronicle the horrors that she encountered, but for safety’s sake, let’s just say that it was far worse than anyone could ever anticipate, include physical, mental, and emotional abuse, mostly on the part of the classroom aide, and very little attention being paid to Sophia, who was, indeed, allowed to participate in school in full-blown Autism mode, rather than in an environment in which the teacher and aide try to coax her out of her own Autism world and in to a world of social interaction. However, before I knew any of this, the teacher met me at pickup and asked me to chaperone the upcoming zoo field trip.
RRRRRRRRRRRRIP…backing up. The Friday prior to the visit, the class went on a field trip with the morning class, and the “normal” Kindergarten classes to a nature preserve. Knowing that they know I am home all day, I figured they would’ve asked me to chaperone, but no…they didn’t. I was very uneasy about this field trip. VERY uneasy. It was going to be outside, and most likely, HOT, two very bad things for Sophia. Not to mention it would be over lunch, and Sophia doesn’t eat at school. She also never really liked the aide in the classroom but I couldn’t place why (until our consultant’s visit, which hadn’t happened yet). I dropped her off the morning of, and she was very excited. I had packed her a lunch of chicken nuggets, grilled cheese, goldfish, and pudding, hoping that if she had her favorite foods, she would eat SOMETHING. While waiting for the buses to get back, I started talking to another mother who’s son was in the morning class. She told me how much she disliked this school and that the teacher and the aide made fun of her sons sandals one day, so much so that he didn’t want to ever wear them again. WHAT???? The buses return. The aide and half the kids in the special needs class get off one bus, Sophia gets off the other. She is VISIBLY distraught and very much wants to leave. I wait to talk to the teacher and to get her lunchbox back. The teacher turns around, looks at Sophia clinging to me and just goes “eh” and shrugs. WHAT THE HELL DOES THAT MEAN? So I ask where her lunchbox is? She says the aide has it. Wonderful. She tells me she thinks she ate something, but Sophia was with the aide the whole trip.
I get the lunchbox, open it up, and see that nothing has been eaten. Swell. I ask Sophia what happened, she says that the park ranger had a dog (Sophia is TERRIFIED of dogs in real life) and she got up to walk away from it and “Mr. “Aide” yelled at me.” No attempt to calm her, just verbal abuse. So I take her immediately to McDonald’s and she eats her Happy Meal before we even get home. Also sucked down the juice I brought for her and the milk from her Happy Meal. Apparently they also don’t hydrate these kids on field trips in 80 degree heat. RRRRRRRRRRIP back to asking me to chaperone: “she just requires too much one-on-one attention for us, so it would be better if you went.” Again, I won’t get in to specifics, but let’s just say that the zoo trip was AFTER the consultant’s visit, and the trip just confirmed everything that my home consultant witnessed. This school was awful, this teacher had NO backbone, and the aide was atrocious. I couldn’t wait for the school year to end. And it did. Time for Kindergarten….