UPDATE

I wanted to send an update out to our family and friends that often ask how Leila is doing. A lot has happened over the past couple months and we have big changes headed our way yet again. To start from the beginning, and to be perfectly honest, Leila is not doing well in school. The first half of the year for Leila was great and she was making awesome gains. Then we had 2 weeks off for Christmas break. When we came back to school Leila started to regress in her behavior. She went from having “green” days were she kept her hands to herself, did not raise her voice, stayed with her class and within school/playground boundaries to constantly tantruming (kicking, hitting, screaming, throwing, hitting her head), removing her shoes and clothes, running away, and having to do the majority of her work in the hallway separated from her class. We had her IEP (Individual Education Plan) in February and it was clearly evident that Leila’s behavior was blocking her from the curriculum and slowing down her learning. When her days started to become only “orange” and “red” or “bad” and “really bad” I requested to have a functional behavior report done. The report basically requires the school behaviorist to figure out why Leila is tantruming. The report required something like 30 hours of observation and data taking… that’s a lot. They also were assessing whether or not a one on one aide would help Leila as well.

 

Things came to a head the week before Chris and I left for vacation. Leila had decided to take her shirt and shoes off and run around the playground at lunchtime and away from her aides. I was called by the principal because it was considered a safety issue and they wanted to make me aware. Right. I was desperate at that point and considered pulling her from school but instead decided to start calling people. I started with one of the program specialists at the district and through my tears I think she took pity on me, gave me some useful advice, her cell phone number and told me to call anytime. Then I called an advocate. I told her what was going on, that the program specialist mentioned moving Leila to a private school specifically for children with special needs and that this was new territory for me and I was scared. She told me she could help us and did a lot of research on her end to find out as much as she could about Leila. When we all met to review the functional behavior report the results were that Leila was tantruming because she didn’t want to do what they were requesting (duh) and was very averse to any kind of transition, whether that be within the classroom or out of it. They suggested at that point that Leila would benefit most from a private school were they had the ability to work within her tantrums and wait her out or remove her to a safe room. Leila’s current teacher, Heather, is supposed to be the best in the district (and I can truly say she is) and if Heather couldn’t control Leila then no one in the district would be able to. From there they sent out a representative from the proposed school to observe Leila and once she gave the okay we went out to take a tour of the school in Hayward.

 

Chris and I were not prepared for this tour. The school had been talked up so much to us and how great it was going to be for Leila that I formed this picture in my head of how it would be and that was not a good idea. The school is right by CSU East bay so it is about a 35 minute drive with minimal traffic. The school was once a public school that was shut down and the Spectrum School moved in. So it is old. And ugly. The school goes all the way up to the age of 22, because they have a transitional work program for 18-22. There are 90 students on campus only 10 of them being girls. The students range from severe to mild. The classroom suggested for Leila has 12 kids in it and 7 staff. When we walked into the classroom we were greeted by a high functioning girl (who is aging out this year) but in the corner was a boy tantruming. I immediately noticed they were cutting out and coloring an Elmo and then I keyed in on the severe children. For example, one was using a chewy tube. These were children were you could see their autism, not like Leila were you wouldn’t necessarily see it at first. I then started panicking and shutting down and didn’t really see the classroom only a few kids. When we got back to the Assistant Director’s office I had a full break down/panic attack that these were the kids Leila would be going to school with. I don’t consider my child severe; I also don’t consider her high functioning. I think she sits right on the cusp of high functioning and if she could just have expressive language she would be on the higher end of the spectrum. Lots of things were running through my mind. I don’t want her exposed to these children, they are not peer models. I don’t want her picking up bad habits. How are they going to encourage her language? How are they going to academically challenge her when there are severe children in the classroom? Just outright panic that this was where we were sending her. Then doubt. Was Leila this bad and I’m in denial? I know she is a certain way at home and a whole different child at school. Did her behavior really warrant this type of environment? Would they be able to give her the intensive intervention that everyone is telling us Leila needs? Did I fail Leila? By sending her to this school am I a failure to her? Well I feel like it dammit. I’ve never been in denial that Leila has autism but I am in denial that this is where she needs to be. The whole thing was complete culture shock and devastating… there is more I could type but it’s not worth the typing.

 

We had one day to process all this before I went to the last IEP yesterday to “sign” that Leila would go to school there. We ended up only agreeing to a trial summer period of 5 weeks. I know that the school environment is not working for Leila. She is not learning and is not successful so keeping her in any public school is not the best option for her right now. Putting Leila in this new school is not the best option yet either. We asked for all options to be open at the end of summer to see what other schools Leila could possibly attend (there is not a lot out there without a significant drive). Leila’s current teacher, Heather, and her current behaviorist both agreed to go out to the school to check on Leila over the summer to see how she was doing. I also have the option at any time to pull her from summer school (it is not mandatory). I am going back to the school to take a tour again and really walk into the classroom and look beyond the students and more at the schedule, staff, and curriculum. I still feel sick to my stomach. And I hate, absolutely hate, that she will be all the way in Hayward. This transition is hard for me. Probably harder then when I sent her off to school full time at age 3. My friend told me today that sometimes you have to take a step back before you can take a step forward. This is clearly a step back for Leila but I hope with all my heart that this is what she needs to move forward. She is so smart and such a fun loving girl it has been very hard to watch her struggle in school. She could be so much more if she would just get out of her own way. Our goal is to get her back at the district. I hope it happens sooner rather then later.